Suck It Up

Kryptonite in the form of Galoshes

2011-09-14T11:21:00.002-04:00

As I openly confessed to the peer editor of my totally awesome book that has yet to be finished but nonetheless exudes total awesomeness, I need to get 'writing'.

I need to do a hell of a lot of things. The list is longer than Rapunzel's hair, I assure you. It's so long, I don't know how to prioritize it. Sad. Back in 'the' day, when most people used Daytimers, and then Outlook, I never strayed from the Fallonized Cornell notes I once learned from my high school Physics teacher. I didn't learn anything ELSE from my high school Physics teacher, I assure you, nor do I have any plausible idea as to how I achieved a 'B' in Physics, other than she was gone a lot and her Mom was sick and she was traveling back and forth from Daytona Beach every single day, and I had her for first period, and I was the only junior (yeah, my Catholic junior high school totally screwed me up with math and science, which is why I was AHEAD of my geek peeps in science and BEHIND in math...which also explains why I did so horribly in both, because Algebra 2 is meant to be taken WITH Chemistry, not AFTER...UGH) and honestly, I don't even think she knew the names of anyone in the class besides our Homecoming Queen who also happened to be pretty smart, unusual yet not as impossible as it may sound, and I think she probly gave everybody in the class a minimum of a 'B', just for showing up on most days.

Back to my Fallonized Cornell notes story....back in 'the' day, I would start my workday every morning with my diet Coke, my Snickers bar (ahhhh, the sorely missed Breakfast of Champions, and now I'm craving Diet Coke which is one of my many primary no-no's which hasn't passed my lips in quite some time) my mechanical pencil and my legal pad. And I would take the previous day's list, and transfer all the items that were not crossed off the day before. I did this every day of my working life, every day of my work by day college by night life, every day of my plan two weddings all by myself life. My colleagues and superiors vocally expressed their amazement at my photographic memory and my awesome figurative (thank YOU my genius six year old son for clarifying the difference between figurative and literal) juggling skills. In fact, one of my favorite aphorisms which became a bit of a catchphrase developed at my last employer, when I was successfully balancing 20 or so projects, totaling hundreds of millions of dollars, my phone ringing off the hook, my profane voice screaming nonstop, papers flying here and there throughout the day, men coming to my cubicle with yet another interruption, another 'fire', another emergency, and I would turn around and 'pretend' to juggle while I VERY loudly made sure that everyone within two counties heard me, "Sure! Throw another ball in the air!", and my 'peers' in the finance department who only had one or two projects and complained all the time at how overworked they were, shut their bitter overpaid pieholes as they realized I continued to outwork them, outwit them, outsmart them, out....whatever, and it wasn't even a competition, but I was always "WINNING". One award after another. One two digit percentage increase after another. WHILE having rat venom shot up every 6-8 weeks. Oh, yeah, AND being a pretty decent wife while pretending to manage parenthood. And perhaps a term as an acitve Deacon. And displaying yet another first place ribbon from the annual baking contest..and...and...and.....all the while,

NEVER SLEEPING THROUGH THE NIGHT....

Sigh.

Those were the days.

Yeah, I should be getting back to my 'list'.

But it is soooooooooooo long, and soooooooooooooo intimidating and soooooooooooo depressing and sooooooooooo barely achievable, and sooooooooooo difficult to work through the pain.........that I simply......don't.

I was supposed to respond back to the I-R-S by the 10th. Shaaaaaaaaa

I was supposed to have a ton of paperwork filled out and given to my awesome attorney on Monday. Shaaaaaaaaaaa

That's just the beginning.

I'm taking care of the kids, though. THAT, I am doing. And pretty well, I might add. They are out of the "I miss Dadddddddddddddddy" stage of attempting to prolong bedtime by getting me to feel sorry for them.

There is laundry to be done, dishwashers to be emptied, floors to be swept, toilets to be cleaned, yet I can't put any weight on my right foot, and damn, the pain is nearly insufferable.

And..............

Fallon-style.................

God dropped a set of galoshes in our life last week.

Galoshes, I say.

For the rain, I pray.

Galoshes, in the form of two job inquiries for Billy, one of which is seemingly solidified as Jell-O.

In Minneola.

Florida.

Minneola, as in, the tiny town ensconced by Clermont that allegedly has its own mayor and schools and fire department, but might as well be Clermont, and even the Minneolans know it.

This life of mine, of ours, this waiting on pins and needles life of ours, this life of totally trusting God, while attempting to interpret the heiroglyphics of his message.........

Damn.

M_________________M____________________________________________M

That's my attempt at illustrating the high peaks and low valleys of our life, aka our time in the desert.

It's not just physically difficult to scratch items off my to-do list.

Mentally, emotionally.................I almost 'can't' do it.

And there's nothing that Fallons 'can't' do.

(other than play professional basketball or win an NAACP Image Award)

Or so we tell our children.

I used to feel like Superwoman, even though I knew I wasn't.

I knew I wasn't Superwoman because of life.

Life was my Kryptonite.

Life IS my Kryptonite.

Dammit, this SUCKS.

2011-08-03T17:04:00.000-04:00

~

I'm five days away from Remicade.

I'm basically bedridden at this point.

The RA and the Crohns seems to rear their ugly heads at the EXACT same time.

It seems to me that I do pretty well for 21 days, but my doctor refuses to allow me to have the Remicade any sooner than 28 days. So I'm 'down' the week before a treatment, and I'm 'down' for the week 'of' the treatment, which means I'm 'down' every two weeks.

UGH.

Yeah, that's all I got.

Today.

~

No Hiccups Today

2011-07-12T10:36:00.000-04:00

No story, no hiccups, nothing but information.....

For the past two weeks, well, I have been pretty much PARALYZED from the neck down, due to the Rheumatoid NONSENSE. That's what I call it : R with a capital 'N'. Someday it's left fingers, hours later it's right tarsa, then a knee, then right metatarses, then left carpal, then left shoulder, then right carpal, then left thumb hinge joint then right meta carpal, all the phalanges (and no Reilly, I cannot tell you why fingers and toes are called phalanges, when they are in fact fingers and toes, and no I didn't finish Latin, I only made it half way through the semester because this amazingly beautiful grad student taught the class and I remember NOTHING except how hot he was, and of course not, no, I never took anatomy and physiology, so kiddo, you can take it for me, and tell me what phalanges mean. I know what they ARE, isn't that enough? And Jake, don't tell me there are 800 bones on your body, when sir, there are only 212. In classic jackass politician fashion, he persisted and then I convinced and PROMISED him that, oh yeah, you absolutely COULD have 800 bones in your body once I decide to start to arbitrarily break them at will. Silence. Victory for mean, torturous mom) the left elbow............ad nauseum.

Lest we forget my newly found talent that could perhaps lead me to an acting ('cept it wouldn't be acting, really) career for a new market of Depends for young (ahem) people such as myself. I'll put that on my list of things to do = call the Depends people and make my pitch. Right. Don't hold your breath. I really think the "Feel MY Pain" gameshow idea is awesome. Especially after watching an episode of the newest, dumbest show on TV (101 Ways To Get Kicked Off A Game Show, which is pretty much Wipeout on Acid while signing your life's rights away in case you perhaps DIE) which of course my son loves more than an episode of babies putting whoopie cushions underneath labrador retrievers on America's Funniest Videos.

In short, it's been a very difficult 2 weeks - the poop (which, I must admit is quite down in frequency and agony. woohoo!) was reported at 5+ per day during today's intake interview, which was better than it has been in a while. Last month it was between 10 and 15 per day, which means the Remicade is working. I have ZERO duodenal pain, and it has generally and measuredly improved over time, which means the Remicade is working. I reported to my Remicade lab today, five pounds lighter - once I lose five more pounds them I can I go 'down' one vial of poison! woohoo!. Small potential victory, but a potential victory nonetheless. Got the dehydration lecture of course. I was prepared for it. Sucked it up and said I'd try better next time.

My angel Sue usually, on the first strike, threads the vein on my right hand that she affectionaetly nickames 'Old Faithful', the vein on my right wrist that always pops up for 'her'. The top of the wrist, closer to the hand than the lower forearm, not the inside wrist part - that is just plain crueler than waterboarding, in my opinon. I'd rather be tricked into believing that i'm drowning to death when I am in fact NOT, than to have a size 12 (Paul Bunyan style HUGE) hypodermic needle and catheter stabbed into the inside of my wrists, boring through tendons, muscles, and cartilage like a coal mining drill through billion year old rock. 'cept the rock is cold blooded, and not feeling any pain. Just an educated guess here, and no, I do not have a Doctorate in Materials Science Engineering, but I'll stick to my heartfelt and passionate personal experience when I defend my argument.

Sigh. Nope. No Old Faithful. Not today. Sigh. Fallon's Law. Sigh. Sue had to go, um, spear fishing instead of hook fishing today, on both arms. The amazing part of this? I am completely 'over' the intensity of the pain of being stabbed by needles. It's been a lonnggg time since I've shed an ounce of a tear, even on a bad stick. And no, I didn't even have any meds in me at this time, since they hadn't got a line in yet! But she got it in 'somewhere', and two hours after i got there, we were medicated and shooting up rat venom.

But my wonderful doctor has told me a minimum of eleventy million times (and if you know this physician of mine, God rest your soul, because you also know that I'm not exaggerating), that once all the 'lines' aka 'veins' are 'gone' (meaning shot to hell by the steroids and just plain overused, kinda like tires - once they're bald, they don't work anymore. Problem is, I can certainly get a tire changed at Walmart, but a vein? Not so much.) Yet anyway. You never know what Wally World will come up with next,even though I've stopped shopping there out of sheer mental and physical EXHAUSTION. This new complication of 'even worse veins than I thought' is just one more conumdrum that I will not worry about until my August 8th infusion. That's all that matters.

Had a reaction, not a horrible one, just horrible 'enough' to warrant extra drugs and TLC, towards the end (way weird), came home after a very nice cute and cheap family lunch which appealed to EVERYONE (that NEVER happens) downtown, as Billy and the kids traipsed all over the place 'waiting' for me. Yes, he has been very nice lately. Nope, don't know why. And not asking! Went straight to bed at 435pm, as Mr. Fallon does NOT like me when I'm, as he calls it "THREE SHEETS TO THE WIND." So I did. passed out on my bed within minutes. Woke up at 805, not knowing what day it was, not knowing if it was AM or PM, either morning or night...period. And no, of course not, I know better than to pick up my phone after these umm.....hmmmmm.....lapses in consciousness. Eventually Goldilocks came in to 'check' on me. We weren't having 'dinner' per se, as we had huge, scrumptious sandwiches at 4pm, and we have a stocked fridge and pantry full of delicous AND very likeable HEALTHY snacks(!) that we told the kids they could munch on later if they were hungry, as they ate out for two big meals today.

So here I am. Awake. The rest of the pirates are dozing. I might still have been dozing, if my sweet baby girl hadn't come to 'check' on me in classic nurse fashion. And no, of course I'm not the slightest bit angry that she did. She snuggled with me for a little while and watched America's Got Talent and then off to bed for three pirates. I had to get up and reload and relock my eleventy pills for the night, and now I'm killing time til they take effect.

So I'll recap the good news (and here come the bullets!):

The guts are better.
I am achieving a 'healthy' weight loss.
I am pooping less, and therefore having less pain before, during, and after those wondrous events that nobody talks about unless they live in this house, own the rights to two 'poop' blogs, are in the process of FINISHING an autobiography about lots of different kinds of poops, or are keynote speakers at Digestive Disease Week.
I have ZERO duodenal pain (today), which seems unconscionable when I remember a short time ago when I was completely 'ready' to kill myself as the only means available to me of ending my pain, not ending my life. No, suicide is never rational, but a lot of people like 'me' can relate to this. What really matters is that i did NOT physically end my pain, I prayed, I got a second opinion, I consulted with surgeons, I got some steroids, and VOILA! Right now, at this moment in time, I do not have pain in my shrunken head of a duodenal bulb. Now, this doesn't mean my food and pills don't continue to get stuck on a daily basis - they most certainly do. But I've learned some interesting um, Fallon Manuveurs to push those items down and through my stomach. I'm quite talented in a pinch.
Magical, angelic nurse of the millennium Sue found a vein! WHOO HOOOOOOO!
Ten hours after the Remicade began its inchworm-slow drip, I currently exhibit NO JOINT PAIN ANYWHERE IN MY BODY THAT WAS JUST THERE AT 8 AM THIS MORNING.
Which means, yet again - the REMICADE works on the joints, which MEANS, the joint problem is certainly an INFLAMMATORY condition, most likely RHEUMATOID ARTHRITIS, and once I can raise the cash, I'll soon have another new best medical professional, a Rheumatologist to add to my endless rolodex of physician names, numbers, and odd specialties..
Minor reaction was observed, noted, and medicated. I lived another reaction to endure another reaction in 28 days. Small victory, but a victory nonetheless.
The remaining pirates had a busy, yet fun day, traipsing around downtown Orlando, something the mini pirates haven't really done at length. They had a good day. Thanks hubby and kids!
Oh! I did NOT poop myself today! Yay me!
Big Bad Dad, aka Billy Two Swords allowed the kids 5 bucks each to spend at the gigantic dollar store near my doctor's office. However, he added the greatest caveat ever - "you kids canNOT play with those toys until TOMORROW. Mama will need her rest so that the she can do some stuff she needs to do this week, and ya'll need to keep yourselves busy (again, TV is outlawed in the summer until 5pm every day, because, well, we're mean), so wait and play with your new pieces of crappy dollar toys TOMORROW. DEAL or NO DEAL?" It was a unanimous deal. No arguments at all.

Yep. Remicade is working on the R capital N. Yes, Remicade is working on the CD. Yes, I feel like I've been hit by a truck. Yes, I have a major freaking headache, most likely caused by drug side efftects, which I don't get from the treatments very often, but are not unheard of, and no, I am not surprised that I have one. At this point in my career as a professional patient, nothing surprises me. If I were to wake up in the morning resembling a life sized rat, or perhaps even an albino rhino, I'll simply go, "hunh" and will call my nurse to chart it, and if she asks, I'll even send digital pics. We do this from time to time, so that she can 'visualize' my always new and always 'off the charts WEIRD' symptoms.

My hope then for tomorrow at least? That my four limbs, which currently feel as if they weigh 200 pounds each, will enable me to get out of bed sometime tomorrow. That and a good night's sleep (shaaaaaa - if 150 milligrams of Benadryl didn't do it, um.....what will?) will provide my body with much needed TRUE UNCONSCIOUS kinda rest. Not consiously lying on the couch in a half-assed attempt at 'rest'. Nope, I need S L E E P. So says my doc. He says I need approx. TEN hours of uninterrupted sleep. The last time that happened, I was unconscious during and after major internal reconstructive surgery. I'm due.

My highly intelligent husband occassionally has moments of true genius, and today, while he and the kids traipsed around "the buildings that Mommy and Daddy built", to wit Reilly replied, a bit mel-on--collie (subtle reference to Megamind), "I am soooooo sad for you guys! You guys built like every building down here, and at Disney too! You never did anything bad! You shouldn't have gotten fired! What were those people thinking? Me and Jake went to all your buildings that you guys built, and they all looked awesome. There is just NO SUCH SENSE of this!" And we let 'er rip. Cuz at least the healthier of the two of us needed to hear that boost of confidence from his 'girl'.

I digress.....as Super Billy was traipsing around for six hours today, he took the kids for a walk around Lake Eola at 9 am (GA-RATE idea, honey! ) Exercise, AND sightseeting AND getting them outside AND working up a healthy appetite! They were going to go to Billy and Heather's favorite dive, I'm CERTAIN you know of it, Brian's, on the corner of Virginia and Ivanhoe, overlooking Lake Ivanhoe, and across the street from Harmon Photo, but alas, it is closed for remodeling, but we really think it is closed closed. Dammit. Sigh. Instead, he took the kids to 'his' building, parked inside, went through the world's smallest Publix on the ground floor, and found a breakfast place called the Breakfast Club, which was a complete homage to the movie, from soup to nuts. He liked it and they liked it.

They did a bunch of other stuff too, including getting Reilly's 'missing' items for camp that starts on Friday.

Two Swords even let them ride the Lymmo bus 'trolley', and took them to one of the most awesome libraries ever, the Orlando Public Libarary. Jake's response, "W H O A!"

And then Two Swords jumped the shark. I mean, JUMPED THE SHARK. Somehow, someway, he was prepared to take the kids to the Orlando Science Center. We've always wanted to go, but at 15bucks a head? Forget it. We can go airboating and catch gators for that kinda cash. But then either a misdemeanor, a felony, or an act of God took place. They walked right up to the ticket and turnstile area, were politely ushered through, not asked for money or told they needed tickets. The went through the turnstile, and VOILA! A free trip to the Science center! They had a great time, and Billy still can't believe it happened. He had no intention of 'stealing' admission. He went where they were supposed to go, and they were basically 'ushered' in! They had a big time. Not as big a time at DC's Smithsonian, or St. Louis' City Museum, but way better than New Mexico's BLASTED Carlsbad Caverns, for sure.

My three pirates got a lot accomplished in 6 hours, that's for sure. I didn't think that Pops had it in him. I certainly NOT! NOT me!

But then again, for reasons unbeknownst to me at this date, but praying His plan will be revealed to me some day, none of the three of us could handle the Remicade conundrum as well as I can.

It all works out.

That's what families are for.

That's whay MY family is made of.

Praying for a continuance for tomorrow.

Because God is good. All the time. All the time.. MY God is good.

Ay-men.

Hello

2011-07-06T06:51:00.000-04:00

Hello, my friends.

I know there are bunches and bunches of people on your prayer list(s).

I know that my family is on your list.

Sometimes, okay, well, ALL the time, it is 'hard' for me to ask for prayer, and often for help.

Interestingly enough, our family is hanging in there. Better, really. All the way around. No 'news' in any economic or financial area, other than, hey, we still live at our address? :P

We are spending quality time together, actually a lot of it, as we don't have means or reasons to spend it away or apart.

Today, I need prayer, though. And you know, if I'm admitting it, or asking for it, well, yeah, I need it.

It's not a new prayer.

It's the continual, gradual, progressive destruction of my body by my body.

You know, I thought I was challenged with Crohn's. And the anxiety, panic, social concerns, bowel control issues, drug reactions, etc. that came with it. Yep, that was a handful.

Boy have I been hit in the head with a 2x4 (again).

This rheumatoid arthritis nonsense has thrown me a curveball like none other. And I have always prided myself on my batting average....

2 1/2 to 3 weeks after a treatment, my fingers/hands/wrists/toes/feet/ankles/knees arbitrarily LOCK UP. So I do my best to tend to the joints that don't work on ANY GIVEN DAY. And then the next day, those joints are completely FINE (yes, this is frustration, no it is NOT screaming), but a whole other set of joints arbitrarily LOCK UP. Walking is, hmmmm, difficult, if not impossible, on some days. Today is one of those days. No, I have not been up 'all' night, however, I am up 'already' at 612am. Today, I cannot walk (YET, anyway....if I work at it really hard, and by that, I mean, if I perform physical therapy on myself for hours and hours (yeah, it REALLY REALLY hurts, but sometimes it works) I might be able to put weight on at least my left foot, hopefully by this afternoon.

Funny. Today the worst pain is my right wrist, and my right ankle/foot. It is easier to rub my right foot with my left hand. So I lucked out today.

You may ask, hmmmm, what would you like me to pray for? That's funny too. You know, you've walked beside me for most of this 11 year, 11 million mile journey. I don't think I've ever asked God for a miracle cure, except for when the lives of my babies or my husband were at stake. I've never asked him to 'cure' me. I've always asked for strength, peace, strength, patience, strength..... I've asked him to help me with this blasted disability nonsense, yet then I received a second diagnosis if not more devastating, then equally as devastating as the first. Maybe I'm 'asking' for the wrong prayer. Maybe, since my doctor, the one who once motivated me to hang in there, the one who said he dedicated his life to this battle that he only fights from the sidelines, maybe since HE has, for all intents and purposes 'given up', maybe that is my cue to finally ask for the miracles and the cures.

Because right now, RIGHT NOW, well...

I can't brush my daughter's hair.

I couldn't run to my children's rooms if they were in danger or hurt and NEEDED me to...in fact, I probably couldn't walk, but I might be able to scoot.

I somehow managed to arrive at the toilet a little while ago, just before it was 'too' late. Had it been 'too' late, I wouldn't have been able to clean up the mess. Talk about humility. It really is bad enough to literally poop on yourself and/or the floor, but to have to ask for help to clean it up? Yeah, that's sexy, I'm sure.

I'm not exactly sure how I arrived to the bathroom. It was a one- half-Elephant Man walk, one-fourth drunken Weeble Wobble dance move, one-fourth 'I've Fallen and I Can't Get Up'. At 3 in the morning. Actually, let's just call it ONE HUNDRED PERCENT PATHETIC. Yes. That it was.

I don't know how I am going to keep my 'school's out for the summer' children happy, active, safe, playful, engaging, fed, satisfied, challenged, entertained....let alone keeping their claustrophobia (it's rainy season) to a low grade cabin fever TODAY, instead of an all out 'to the death' match of tempers.

So yeah. I need prayer today. For all that stuff. But I'm going to start setting my prayer bar even higher. I'm going to start praying for the miracles - for a complete cure of all my symptoms. For a cure so complete that I can be the primary, if not solitary bread winner for this family. For a cure that will raise me from my bed, from the floor, from the toilet, from the pit of living despair. For a cure that will enable me to run, swim, dance, chase, walk, and EMBRACE my children like mothers are supposed to do.

I am going to pray these prayers because at the very least, I owe it to my children to.....do as I have always asked them to do, no matter how high the mountain, how difficult the obstacle, how impossible the dream.

I am going to..........

T R Y

Will you help me to T R Y?

Thank you for fighting along with me, side by side.

I wouldn't still be here, asking for yet more prayer without you.

Humbly,

Heather

TPN

2011-05-09T00:24:00.000-04:00

~

Oh what I wouldn't give for some TPN right now.

You might not know what that means.

TPN stands for Total Parenteral Nutrition.

Which really means, "you get your 'food' through a tube".

I've had TPN before. More than once.

The first time I had TPN was ten years ago, when we discovered that my colon was simply 'not working, and my small intestines had rerouted themselves outside of my body. Which finally explained why my poop looked like coffee grounds and my color was the shade of Mrs. Middleton's dress.

I was in the hospital for over a month. I was in there for almost three weeks PRIOR to the surgery that removed oodles of feet of my guts, leaving my 12 inch scar that snakes north around my belly button, and I remained on TPN for the next week and a half while we waited to see if 'things were going to work'. Thankfully they did, and at some point I went home, craving mashed potatoes, after not having eaten for over a month.

The TPN that I was given consisted of one HUGE bag, I mean HUGE bag, of a thick, clear, yellow liquid, accompanied by a glass bottle of 'white' stuff. The bag of liquid was made up of all the nutrients and minerals that my body needed while unable to eat food. Interestingly, the glass bottle of white stuff was lipids. In other words, FAT. Yep. Your body needs fat. In my case, one glass bottle a day!

When I had visitors, they would of course stare at the millions and millions of tubes and that HUGE bag of yellow stuff, that they probably thought was pee, but why the heck is it strung up on an IV pole? Billy would joshingly tell them, "The yellow bag is Bud Lite, and the white stuff is her glass of milk." Which always brought a smile to my face, as well as the faces of the visitors.

Yeah, I wish I had some TPN right now.

For all intents and purposes, LITERALLY for ALL intents AND purposes, I have stopped eating. Pretty much. Ceased. This didn't start out as a conscious decision, mind you. Until now, I have never had an eating disorder in my life. If I ever starved myself, it was most likely due to nerves, anxiety, or in preparation for surgery.

But now? Well, I have these 80 pounds to lose. Actually, I only have 20 more to go, YAY ME!. Part of the reason I 'stopped' eating is because well, it hurts less. And I don't have to poop if I don't have to eat, and oh, life without poop what a glorious life that would be. So I drink. A lot. Not THAT kind of drink. THAT kind of drink makes me HURT REALLY REALLY BAD, so um, no Tanqueray for me, dammit. I drink alot alot.

So I was wondering how this 'accidental' aneorexia of mine was affecting my health. So I had blood work done at the behest of my primary doc. And the results came back. All within 'normal' levels, meaning, 'my' range of normal, which would never be the same as 'your' range of normal.

I was bewildered. I asked him, "How can that BE? I have STOPPED eating!" And he said, "Well, as long as you aren't dehydrated, your bloodwork may not show any abnormalities." Which made me think of all the others out there who have a REAL eating disorder problem (yes, mine is only temporary, no, I am not making light of eating disorders, and no, you can't possibly understand my choice to temporarily subsist on crystal lite and go-gurt unless you yourself have Crohn's Disease, so please don't judge me)....

And I thought, so this is how they can 'hide' it. Because unless they confess it, like I openly do, it might go undetected. And for 'them', going to a doctor and having bloodwork done just might be a cry for help, only to be told 'all is normal, goodbye'. This has disturbed me for weeks now, and I don't quite know why.

Okay, now that I went completely off-topic, yeah, I wish had some TPN right now. Cuz I'm not hungry. But I forced myself to eat one tiny slice of pizza for Mother's Day today. And yes, as I type this, it is 12:20am. Because my guts woke me up. And up I am, wishing for TPN.

~

My Life In Conjuction with ROIDS

2011-05-02T00:01:00.000-04:00

~
I hate em.

I really do.

I never had the chance to love them, quite actually. (I've noticed my writing has taken a bit of a British spin in the past four days, to which I can only attributed the OVERcoverage of THE wedding. Not that i didn't watch THE wedding, of course I did, and days worth of replays, but I wasn't quite expecting the impact that the event would have on my diction.)

Back to the hated roids.

I first got roids when I first got diagnosed. Eleven years ago, actually.

The first doctor (GI) I had was a steroid guy, and not a surgery guy, and not a 'hottest drug on the shelf' guy.

It took me a year and two blown out knees from steroid damage to the tune of 180mg per day for about 6 months to decide to fire THAT guy and inevitably hire TFG.

Seriously, we had just gotten married, and came home from our honeymoon, and I just started to inflate like a Macy's balloon. Being new to the 'sick for the rest of your life' club, I hadn't yet learned the need to question, question, question, press, fire, hire, press, question, research, question, question, question.

And keep in mind, the internet was really only sprouting wings about this time. But at this time, in 2000, I did have the "Mother's Medical Encylopedia" that MY mother gave to me, which I am certain was published somewhere between 1952 and 1969. Amazingly, it's in color. So when I couldn't find what I wanted on the internet one nite, I went to Old Mother Hubbard's Cubbard for the 80 pound tome. Hmmmm. imagine that. Crohn's Disease was not in the Mother's Medical Encyclopedia. Nope. Nor was Ileitus. Or Colitis. Or Inflammatory Bowel Disease. Or the words autoimmune disease. FRICK A FRACK A FRICK A FRACK

So here I am, looking like the Pillsbury DoughBoy, sprouting hair on my face that most certainly belonged to one of my brothers, getting acne for the first time since 1987 when I worked at McDonald's for one month, and had to PEEL the french fry grease off of my face each night when I got home, and no matter what I bathed with, I still smelled like a french fry, and my zits were on a mission. from God. Clearly. They were everywhere.

So, bactrack. My guts (intestines) are poofy and pulpy and clearly 'distended' , yeah, try looking THAT one up mama's bandaid book! Dr. ROIDS A ROT tells me I need to take the roids, that i have limited options. yeah, no duh, dude. so i took them as he prescribed them because really, how would have known THEN that 180mg of prednisone a day could potentially decimate my liver?

And that night. OMG that night. That night when my parents were sleeping at our house because we lived between them and the hospital that my dad had a heart cath scheduled for very early the next morning. That night, we all went to bed. Billy and I had to be up for work in the morning, but my parents might leave before we see them, but we should see them in the evening, as he would sleep one more night at our house before they headed 'home'.

So, let's assume that EVERYone is fast asleep, including me.

And then the fight started. *actually there wasn't a fight of any kind, I just love saying that and don't get the opportunity to do so....

I bolted up in bed, bent in half at the hip.
I was screaming, screaming, SCREAMING in pure horriffic agony.
I didn't know what was causing this pain I had never experienced before.
I bolted up in bed because I thought I had been dreaming that Billy was simultaneously sawing off both of my legs at the knees.

THAT was the pain.
THAT was NOT happening.
No, my husband had not gotten all "Sweeney Todd" on me.

So now we have pain, now we have poof, now we have back acne and gross facial hair and as I soon find out, yet another crazy ass diagnosis, given to me in the ER 8 or 10 hours later that day,

The steroids were used to keep my Crohn's Disease in a minimal state of inflammation. However, the dosage, and the dosed length of time were CLEARLY an overdose. And spots of my knees literally 'blew out'. Like when a football player 'blows' out a knee. Yeah, my knees blew out. They blew out CHUNKS of DEAD BONE which had been siphoned from their air supply by the dastardly ROIDS. My legs were so swollen that I could not bend either knee. I wrapped them, I iced them, I popped any and all pills for them. To no avail. The agony continued with no ecstasy in my near future. But what did happen is I got a new doctor, who said that dose of ROIDS was simply ridiculous, and he promised me ON THAT DAY, that he would only use steroids in my care plan after much conversation and all other options were no longer optional. For the most part, he has kept his word. Four months later, I had nine feet of my entrails removed. Talk about a fun time! WOOHOO! Never better! Alas, two months later, I was treated to a 2/1 deal. Sorta. The bone guy and the rhematologist guy unanimously agreed that I now had AVASCULAR NECROSIS or as is now commonly called OSTEO NECROSIS which translated literally means BONE DEATH. Yeah. Precisely. Thirty years old, active all my life, dead bones in my knees. Nice. So I have the surgery. He did both knees on the same day. He said it was better for me 'that way'. I wasn't seeing his logic. And I barely remember how the hell I got along with two sliced up knees and a cane. Thankfully I had just been fired from my job, so I had a little bit of time to recover while I hoped the phone would ring with a fabulous job offer. And I did recover, and it did ring, and i got the offer, and I started my brand new job popping 2-3 Percocets every four hours. But, I recovered.

And guess what? Roids are back in my life. Yeah, I know, it sucks. But it is what it is. It's a very low dose, nowhere near the 180mg nonsense. Ugh. But I need them right now. As I now continue to exhibit and experience more and more symptoms of inflammation along the lines of rheumatoid arthritis, steroids are once again on my side. For a little while only, I hope.

I need a doctor to say in writing YES YOU HAVE RA, and then I continue with Remicade which treats Crohns AND RA and get on board with another anti-inflammatory, like maybe methotrexate (and you think I'm a germophobe NOW???? Oh boy)

In the meantime, I hate Roids.

Because it is 1152pm and my knees and hips are raging, screaming for pain control,
Because it is 1152pm and I can't sleep, not just from the pain, but from the insomnia powers of the ROIDS.
Because it is 1152pm and I can't sleep, not just from the pain, not just from the insomnia, but now, because of the hot flashes from the ROIDS.

My life sometimes sounds like this lately:
If I could just get comfortable, maybe I could....
Well if it weren't so hot in here, I could....
I can't sleep. WTF. ROIDS.

Maybe I'll go and find that 800 pound volume of Mother's Medical Encyclopedia and bore myself to sleep with whooping cough, the common cold, mumps, measles, impetigo, chicken pox. And perhaps I might even write a chapter or two on every other 'current' malady that is 'out there and add it to my own copy of the book, in case some other mother on some other day needs to know what Osteo Necrosis is.

If, that is, my Ambien doesn't kick in in t-minus 8 seconds and counting.

Prescription Refill

2011-04-19T09:29:00.000-04:00

~

I was scheduled to have Remicade today. And just in time, as my new rheumatoid issue has made my joints HAYWIRE.

But, Reilly was diagnosed with Strep Throat yesterday, and it just isn't 'safe' for me to have my immune system destroyed while someone in my house has a highly contagious infection.

So, a few minutes ago I called Miracle Nurse, and told her that I would NOT be coming today, and she said she kinda knew, because the other nurse, Annie Oakley, conferred with her when I called yesterday, but ALSO,

(why couldn't they have told me this YESTERDAY?),

my free Remicade has run out and I can't have anymore until I submit the financial needs paperwork, nor can I set up another appointment.

Ugh.

I kindly (it was soooooo hard to be kind) said that I have all the paperwork here and ready, and I will get it into the mail to her ASAP.

And now I must wait for her to call me when I can have an appointment.

Cripes.

I feel like the foreboding Aunt Meredith when dealing with her third favorite nephew, my pirate son - I can see the future.

It will probably be another month or so before I will get another treatment.

Which THEN means, that if we go beyond eight weeks, I will have to go back and be 'reloaded' from 0, 2, 4, 4, 4.....

That means I will have to have a 'loading' dose (the '0' dose), and then another infusion two weeks later ('2') and then another infusion four weeks after that, and then I am back on my regular schedule.

Hopefully and prayerfully church will kick in the nine hundred bucks for three extra treatments, OR I will have Mediciad by then OR my husband will have a job with W-2s and insurance by then.

And even though I will try my darndest to make sure this does NOT happen, I will probably start going downhill into a flaming state of 'flare' within the next two weeks.

I understand that I have to abide by the rules of the free $17,000 (times 12 for each month) Remicade, but here's what makes me REALLY mad.

TWO infusions ago, which would be, EIGHT WEEKS ago, the patient, meaning ME!, mentioned to Sue that I thought I was close to my annual renewal period for the 'free' Remicade.

She said, she hadn't received any paperwork related to that, so I didn't need to worry about it.

So I didn't.

LAST infusion, which would have been FOUR weeks ago, I told Sue that I had received the renewal paperwork the day BEFORE, and that I would start gathering all my info together to send it in.

And she told me (AND I QUOTE!) "Just bring it to your next infusion, and that way we can keep it all together with the paperwork that I have to do and the signatures needed by the doc and the finance manager. Since we haven't received a notification yet, there shouldn't be any problems."

To wit I said, Okay.

So, I had all the paperwork pulled and ready to take with me to the treatment I was supposed to have TODAY...I had done what I had been told to do.

No one called me telling me to accelerate it or anything.

So, NOW, I have to go somewhere and PAY to have it all copied, then I'll have to PAY to have it mailed PRIORITY/INSURED/URGENT whatever, because it's not like I can just drop it off at my doc's office - it is 40 miles away.

And THEN, Lord only knows how much time it will take for the paperwork to go through the office and get all the info that is needed to finish the 'deal'.

Compare this to say, not getting a timely refill of your Vicodin, or your Xanax.

Yeah, if only it were THAT painfully simple.

~

And God Was In The House

2011-02-13T15:35:00.000-05:00

~

Hellfire, and damnation, I don't even know where to start!

At the revelation?

At the goosebumps?

At the baptism?

At the tears?

Whew.

How about at the beginning?

Yeah, that's a good idea.

I'll start at the beginning.

In the beginning......

On THIS very cold West Central Florida Sunday morning (39 degrees), THIS family struggled to get to worship.

All of us had our own issues.

A couple of us didn't/don't feel well.

A few wardrobe malfunctions.

Lots of crankiness.

Yep.

Rough morning.

Before we left the house, there were tears.

And a pow-pow. (Piratese for spanking)

The ride to church was UBER-quiet.

We arrive at church, thirty minutes early.

SOMEONE is in OUR parking space.

Two Swords thinks we 'own' it.

Like 'our' pew.

Ree-dick-you-less.

I know.

But another 'omen', of, Good Lord, can this day GET any worse?

YES!

Of course it can!

But, at that moment in time, struggling with all of these 'struggles', I neglected to see the other side of the coin.

Good Lord, can this day get any BETTER?

YES!

Of course it can!

And friends, it did. Soooooo much better.

We had no idea what this worship service had in store for us today.

How could we?

How does anyone know, on any given Sunday, when God will be speaking to YOU?

Like, on any given Sunday, either football team can win, right?

And on any given Sunday, your ears and eyes just might be opened to a message you weren't expecting to hear, but man oh man, you certainly were in NEED of hearing.

I flipped through the bulletin and noticed the sermon title was "The Beatitudes", but the big projector screens kept flashing the word "BLESSED".

Hmmmm.

VERY intrigued I was.

Considering how I know how blessed we are and always have been.

But for a really long time, it's been hard to muddle through the muck and pampas grass that has been our 'life', to 'see' those blessings and focus on THEM each and every day instead of being brought down by the muck and the muddling.

Worship started with our future American Idol, "Reilly the Red", singing with her "Graceland Singers" troupe.

She was AWE-SOME.

I mean, all of a sudden, she can really S I N G!

She held that really long high note, for a really long high time!

I couldn't believe it!

See, she's been inspired by American Idol.

Most of the winners/contenders on American Idol all got their starts in:

C H U R C H

So Reilly has Carrie Underwood and American Idol on the brain.

As she headed for her 'first' trip to the microphone this morning, I said, "Jesus at the Wheel" baby girl! Jesus at the Wheel!"

She looked at me like "My mom is a complete dork."

And sang her BUTT off.

So proud.

Daddy has tears running down his face.

Jake is all, "YAY SISSY!"

I have goosebumps in places I didn't know there were goosebumps.

And THEN....for the first time ever.....she and her pardner Eva were invited to sing with the grown ups!

No practice.

Winged it.

Held her own for two songs.

How did she know the words, with no practice?

Well, in case you didn't know, these days, little church-goers have Contemporary Christian music on their i-Pods. Which my Contemporary Christian friend and pew-mate and fellow Steeler fanatic, Mister Bill finds hilarious for some reason. But she knew all the words, that's the point.

One of the songs that they sang was "Sanctuary".

Which JUST SO HAPPENS to be Jake's "MOMMY'S LULLABY".

Meaning, the song that MOMMY sings to him, and has sung to him since the day he was born.

So, Jake was sitting in my lap, still steamed about the "I hate this boring shirt that my Dad made me wear to church this morning menagerie", but when he hears the first notes, he lights up and says:

"MOMMY! IT'S YOUR LULLABY!"

And I said, "Sing it baby! Just like Sissy. Loud and proud."

And he did.

If you don't know the words, this is them:

Lord, pre-pare me

To be a Sanc-tu-ar-yyyyyy

Pure and hol-yyyyyy

Tried and truuuuuuuuuue

With Thanks-giving

I'll be a li-ving

Sanc-tu-ar-yyyyyyyy

Forrrrrrrr you

And he sang it, loud and proud.

And I realize, God is in the house today.

I know He is ALWAYS in the house, but TODAY, he was SPEAKING, YELLING, SCREAMING to the Fallon Family - YO! I'M IN THE HOUSE TODAY, AND LISTEN UP, I AM SPEAKING TO Y'ALL!

Next up - and I gotta tell ya, this was some special service today - a middle schooler, and friend of our family, Tanner, read the scripture today.

When he approached the podium, Tanner said, "Good morning."

The congregation pretty much mumbled, "mornin'."

And it is dead quiet, as we await Tanner's reading of the scripture when Jake says in his normal voice, but it seemed super loud because nobody was talking, says:

"Goooooddddd mornnnnninnnngggggggggg, Tannnnnnnerrrrrrrrr."

Thankfully, Jake and Tanner are 'peeps', and Tanner smiled, and I think Jake's own way of saying, "hey, Tanner way to go, making it to the pulpit, to the big time!" kinda broke the ice for Tanner and calmed any nerves he may have had.

And I gotta give props to Tanner too. It was some kind of gold medal service today, I'm telling you. You really do wish you had been there. Trust me.

Reilly returns to 'our' pew (which was not 'stolen' from us today, thank goodness. Ha.)

She informs us that Pastor Carrie asked her to ASSIST WITH A BABY'S BAPTISM today.

Billy and I looked at her, looked at each other, and both went, "WWWHHHHAAAATTTTT?", not angrily, but whoa so thrilled and honored and surprised and man, I don't think this has happened before in our church EVER and I can tell you that ME, well I am thinking, "Is this why she died and came back to life? Is it? Is this part of God's plan for her? Is it? Would she be helping with a baptism if she hadn't had that life affirming, life-altering, life-saving, died and gone to heaven experience?"

There was shock in the pew. (Well, I don't think Aunt Jodi and Mister Bill were in shock, because they had no idea how God was working for us this morning, but 4/6 of the pew was in shock.)

Next came the Children's Message.

Ya just never know what's gonna happen at the Children's Message.

When the Jakester is present, that is.

Because, the Children's Message is always a Q & A between the Pastor and the kiddos.

And as we all know, Jake has all the A's. Just ask him.

So Pastor Shawn had all the kids sit in the very front pews today, instead of on the floor, because he was giving them a first row seat of the baptism that was about to occur.

And he was (I think), trying to explain to him that the baptism was going to be our way of 'blessing' this baby.

He starts with, "Does anyone know what a blessing is?"

And Jake responded, "Yeah, a blessing is a prayer before you eat your dinner, like we bless our food when we say 'God is great, God is good, let us thank Him for our food."

And Pastor Shawn gave him a "Yes!"

And then a second later, I hear Pastor Shawn say, "Can I have that please, Jake. Thank you."

Yeah.

Jake tried to jack the microphone.

Busted.

RIGHT after giving the RIGHT answer at Children's Message.

Sigh.

The life of Jake.

Then, to give another example of a blessing, Pastor Shawn said, "So, if I were to sneeze, what would you say to me?"

Duh, the obvious answer is, "God Bless You!"

Unless you are Jake.

Jake responds to the question, "So, if I were to sneeze, what would you say to me?", with:

"BLOW YOUR NOSE!"

And the usual eruption of laughter occurs, when ummmm, 'Jake' is in the house.

So Pastor Shawn wraps up his message (thanks to the other little disciples who gave 'right' answers), and Pastor Carrie proceeds with the baptism of baby Cody, who I think is going to fit quite nicely into our little country church's group of young'uns, cuz he was a smiling little ham the whole time.
Pastor Carrie motioned for Reilly to come to the altar.

Reilly helped her to pour the water into the baptismal font.

More tears from Dad.

More goosebumps from Mom.

Complete curiousity from Jake, who sneaks away from his seat to get a better glimpse of what his sister is doing, as he has never witnessed a baptism before.

And 'we' were all reminded of our baptismal vows.

We, the congregation.

But most importantly, 'we', the parents of Reilly and Jake.

I need to rewind a couple of days....

Surreally, earlier in the week, my wise sage friend PJ and I spoke.

About a lot.

I'll cut to the chase.

When he asked me how we were doing, I said, "better than 6 months ago, better than 3 months ago....so, better."

He said he was glad to hear that.

And then I said, "But one thing is for certain - we are 100% committed to the raising of those babies TOGETHER, in the SAME house, as ONE family. That has ALWAYS been the committment, that has ALWAYS been the plan, and that IS what we are DOING right NOW. And they are thriving, and they both have AMAZING hearts for Jesus...and....and...and...."

And PJ says, "Heather, I want to thank you."

"Ummmm? For what?"

"For honoring the baptismal vows you made for your children."

Hmmm.

Didn't really know I was or was not doing that, but okay.

And he told me that he cannot count the number of couples who come in and join the church and take the baptism 'class' and baptize their baby, and then he NEVER SEES THEM AGAIN. He says it breaks his heart that he doesn't know if these children are being raised in the faith, if the parents are still married....it really bothers him.

I said, "Well, I have to tell you. Most of the time, it's the kids that pull us out of 'it'. It's the kids who pull us together."

He said, "that's what being married and having a family is all about. No matter how down or how lost you are feeling, or how you feel like you are about to lose everything, you and Billy have somehow held it together for all this time."

God was in the house during THAT conversation, because it hit me pretty hard, and I haven't stopped thinking about it since.

Forwarding back to this morning -

The parents of Baby Cody took their baptismal vows.

I listened VERY, VERY intently, as it had been awhile since we took our last set of bapitsmal vows, in February, 2005.

Yes, in fact, PJ was 100% correct.

Billy and I have honored our baptismal vows.

We have declared Jesus as our Lord and Savior.

We have OPENLY and OFTEN-LY declared our faith, and have KEPT our pledge to raise our children as Christians.

Yes, we HAVE relied on God's grace to live the Christian faith, and teach that faith to our children.

We DO renounce evil and its power in the world, which defies righteousness and love.

Although we are sinners and will be 'til the day we die, we certainly do RENOUNCE the ways of sin that separate us from the love of God. We certainly RENOUNCE it, but when we COMMIT it, we CONFESS it, and we are FORGIVEN. But RENOUNCE it, heck ya, we do. I can't tell you how often I pray for the binding of Satan from my home, my marraige, my children, my life, my friends, my family, my church, our world.

We ABSOLUTELY intend to be Christ's faithful disciple, obeying His word, and showing His love, to our life's end.

Yes.

YES!

We ARE honoring our baptismal vows!

I wanted to chest bump somebody, I was so filled with the Spirit at that moment!

Vows completed, baby baptized and toted around the aisle to 'meet' the congregation, Reilly back to her seat, and it's sermon time.

Now, I've already seen God today. A whole bunch of times.

I hadn't seen nuthin' yet.

It started like this:

"Blessed are the poor in spirit,
for theirs is the kingdom of heaven.

Blessed are they who mourn,
for they shall be comforted.

Blessed are the meek,
for they shall inherit the earth.

Blessed are they who hunger and thirst for righteousness,
for they shall be satisfied.

Blessed are the merciful,
for they shall obtain mercy.

Blessed are the pure of heart,
for they shall see God.

Blessed are the peacemakers,
for they shall be called children of God.

Blessed are they who are persecuted for the sake of righteousness,
for theirs is the kingdom of heaven."

Matthew 5:3-10

I am not even going to ATTEMPT to paraphrase Pastor Carrie's sermon.

All that really matters is that she translated THAT gospel to the Fallon Family, that WE ARE BLESSED.

If we're suffering, we're blessed.

If we're grieving, we're blessed.

If we're weak, we're blessed.

And Pastor Carrie expounded a bit on how people over the centuries have tried to grasp how it can be possible to be all these 'things', yet be 'blessed' at the same time.

Finally, she summed it up.

Because Jesus said so.

That's why.

It's right there.

In Matthew.

She just read it to us.

Because HE said so, that's why.

Man, have I been stupid.

I looked at my baptizing rock star-to be.

I looked at my entertaining preaching mayor-to be.

I looked at my husband.

I looked at my AMAZING church family.

I looked at my hands, one of which still wears a wedding ring.

WE ARE BLESSED!

Because HE said so.

God was in the House today.

And I am so prayerfully thankful that I was a guest there today.

~

Today Was A Good Day

2011-02-12T19:47:00.000-05:00

~

I took Jake to the dance last night.

I did okay.

I slept well.

We all slept in on a cold Saturday morning.

Billy asked me if I was still 'sick' (which translates to, do you still have uncontrollable diarrhea, or are you going to be laying in bed all day).

I replied, truthfully, that 'it' had stayed 'stopped' (meaning, no more diarrhea) since 230pm on Friday afternoon, but that I still had a lot of pain and was really, really sore.

I really wanted to go to Jake's baseball practice today (his new team has just gotten together, and the games don't start for a few weeks, but I have Little League in my blood, as I was one of the first girls to ever play baseball in Little League in Florida, yet another 'milestone' of mine), cuz I hadn't seen him play yet, and because the sun was gorgeous, even though it was pretty chilly.

And grocery shopping HAD to be done.

So.

It was MUTUALLY decided, that I would lie in bed and 'rest' until it was time to go to practice at 1pm. And that's what I did.

I started to get more diarrhea.

Keep in mind, I have had NOTHING to eat since Thursday at 6pm.

NOTHING but fluids.

I did NOT tell anyone.

I just took a few of my meds, not hippo-coma meds, just a few, hoping to get things 'under control', as I am clearly in the midst of a major flare here, and I so do NOT want to go to the hospital for more reasons than I can list, but #1 being, no insurance, #2 being, I hate my doctor, and #3 being, I don't want to contract yet another infection which has happened more times than I want to remember, and #4 being, I don't want to be away from, or worry, the kids.

I have a lot of motivation to get myself well, and I have all the oral medications 'possible' to do so.

I lost another three pounds when I weighed myself today - 21 pounds since 1/21. I'm not upset about 'that', but yes, it is quick, and yes, there is of course the obvious concern about my not eating.

But the rule is - you don't eat until it 'stops'. Or at the very least, 'slows down'.

And when you do start to eat again, it's the white diet.

The White Diet, you ask?

Yep. The White Diet.

I eat anything white - rice, pasta, chicken, bread, dairy, apples/applesauce, bananas - basically, carbs, carbs, carbs.

Stuff that is very easily digestible.

So when I do start eating again, it will be 'whitely'.

Anyway.

As I lay down, awaiting our departure time for baseball practice, the husband cracked the whip with the delinquents.

They were cleaning and decluttering and putting clothes away.

Thankfully, when it was time to go, it had 'stopped' again.

We went to practice.

NOTE - yeah, there was no anxiety or fear related to going to watch my son play baseball, as a certain individual has implied, ahem, insisted has been the case. I was THRILLED that I felt well enough to go.

And I sat in a chair on a beautiful February Florida day, and watched my boy get better and better with his skills.

After a most successful practice, the four of us went to Publix for a two-cart shoppping experience.

We're stocking up for the insurrection that my husband thinks is headed our way.

Whatever.

What REALLY matters is:

I made it through a busy day (a busy day on MY scale of busy-ness, anyway).

I did not disappoint a single member of my family today, including myself.

There were absolutely no harsh words or arguments within the marraige today.

At the end of the day, the groceries were put away, two frozen pizzas in the oven, two kids in their warm jammies, watching TV together for the first time in days.

The spouse is gearing up to watch the race. Heck, football is over, and now racing starts. No break!

I'm on the web, catching up on what's going on in the world. Still haven't eaten anything, but still not hungry, and still not feeling like I'm going to pass out or anything.

I know it sounds crazy, but I know my body, and I know this disease.

Today has been a good day.

I did what my body let me do, which conveniently, was exactly what I wanted to do.

Doesn't happen very often.

Especially lately.

Nor have we had a peaceful domestic day lately.

Or very often, for that matter.

Today was a good day.

~

Thank you, friends

2011-02-11T15:24:00.000-05:00

~

Things got worse before they got better. But they ultimately got better.
My symptoms got bad enough for me to call me doctor whom I avoid at all possible costs. He instructed me to "get my ass in the hospital, immediately." He didn't mention the rest of me, that's almost funny, given the circumstances. Anyway, since we still don't have our Medicaid cards, this was not an option. He told me to get on the scale. Huh? Well, I have lost 18 lbs. since my last infusion, on 1/21. Not that I didn't need to lose them, I have about 50 more to go, really, but that's pretty quick.
My goal for today was to do what Heather knows how to do after battling this enemy for 11 years. And that is to 'get it to stop'. My other goal was to 'bring my husband around'. I didn't need his help, his doting on me, his errand-running, I simply needed to know he was 'there'.
I had left him a voice mail while he was at Reilly's school. And I was right - his anger had abated while taking pride in his daughter.
When he got home, his attitude had completely changed. I told him what the doc said, and what my plan was, and I just needed to get it under control, and no I am not' faking' it, and 'yes' I absolutely want to take Jake to his dance tonight, but I have to get this to 'stop', because now I'm bleeding, too.

He asked me what I needed from him. I said, I don't need a single thing but your support. That's all I need right now.

He never apologized with words, but he apologized with his actions. He stayed around the house for awhile, and kept checking on me in the bedroom. Then he came in and asked if I would be okay while he went and helped his neighbor get his fridge installed. And I said yes, I was okay. And he said, (which he stopped saying a LONG time ago), "I have my phone with me if you need for me anything."

Finally, at about 2:15, I got it 'stopped'. So I called him and told him I was feeling much better, and when the kids got home, I would ask Reilly to go to Publix with me, as she's a great helper, and then I would take Jake to the dance.

And he said, "I don't' think you should do that, I think it's too much for you, and if you need me to, I'll take Jake to the dance."

Well, clearly someone's prayers were heard today, because he came back to being Billy, to being the husband and father he's supposed to be.

I might skip the store, but I'm going to the dance.

I just got the energy to put a load of laundry in.

Thank you for your prayers.

All of you.

~

Misery

2011-02-11T08:45:00.000-05:00

Sorry.

I have one.

Yet another one.

The GOOD news is, I really, really think that billy is going to start work on Tuesday. Really, I think it is actually going to happen.

But this morning was/is traumatic.

I had committed/promised/said, whatever, that I would of course be at Reilly's school today at 845am to watch her become Terrific Kid for the umpteenth time.

Let me clarify something here:

I have NEVER, EVER, EVER missed one of my children's 'events', with the exception of perhaps two baseball games, in their entire lives. My career had been jeopardized on more than several occasions when I left for an event, or was late because of an event, or had to leave early for an event.

Last night, the plan was in action.

Last night, Billy had no plan for today, and was NOT going to Terriffic Kid.

This morning, I got up at 630, turned each kid's lights on, started the oven for cinnamon rolls for breakfast.....and then the shit started.

Literally.

Diarrhea - 4 times within a half hour.

Started popping pills to get it to stop.

It's not stopping.

Pain is awful.

Oh, and Jake is being a complete, 'Handful' this morning, which is not helping matters. He's been runny nose and coughing all week and missed one day of school, and yeah he's tired, but he just DRAGS in the morning. And he's running out of time and I am doing the best that I can and Billy is still in the bedroom. Awake, I think, but has no intention of getting up.

Anyway.

I asked Reilly to come here so I could talk to her. She did, and I explained my situation, and I said I was going to really try to be there at 845, but I didn't know if I could make it. And she's really sad. Which, when you have a kid who is a genius and gets accolades every single day, at some point perhaps they should 'give' a little, but that's not for me to say, since my parents never went to ANYTHING. Anyway, she asks if maybe Daddy would come. I said, I don't know, maybe you could ask him?

So she did, but I don't know what she said to him exactly, and he comes storming out of the bedroom and he's pissed as all get out and he starts screaming at me and screaming at Jake and I have go to the bathroom again and then I start having a panic attack and then Reilly said to me that she was sorry she made Daddy mad at me and I said not to worry, she had nothing to do with Daddy and me, and i told her I loved her and I was sorry and I was super proud of her and finally Jake got dressed and they are gone.

B is in the shower, and he is SLAMMING everything.

I am in the recliner, with a heating pad on my stomach, having taken enough medication to put a hippo in a coma, but nope, still no relief.

And then he just verbally ATTACKED me. On and on about my 'recluse' ness, how I never go anywhere. Okay, this is an exaggeration, he's really starting to lay it on thick to make his point. Because, as I said the other day, yes I took Reilly to Graceland and Jake to Walgreens and back to pick up Reilly, and yep, I went to a Super Bowl party, and yep, I went to Publix THREE times last week, and picked up REilly from recorder lessons once......so, false. I do leave the house. I just don't leave it as much as perhaps I 'should', and as much as perhaps 'he' wants me to, but I do in fact leave the house, and I do in fact take the 85/15 role in the academic involvement of our children.

I let him go on and on and on. And I, to this day, just do not see how HE could possibly be suffering as much as ME. Inconvenienced, certainly. But there are soooooooo many more events with the children that he missed than I have.

And this is the FIRST time this has happened.

And he just wouldn't stop. He said i'm so afraid to leave the house I make myself sick.

O how I wish I had the power to 'make' myself sick, therefore I would have the power to 'unmake' myself sick.

I said, "Billy...."

And he SCREAMED, "DON'T BILLY ME".

And I said, "Billy, how could I possibly give myself diarrhea six times in 35 minutes?"

He shrugged and just kept complaining over and over and over again.

He went on and on about what the hell is going to happen when he starts work, which I have already figured out will be a catalyst for my mental 'recovery', as I will be FORCED to do everything for the kids.

And slammed and slammed and slammed some more until he left, said "I'm leaving" no goodbye no I love you, just slammed the door and took off in my car, far too early, but clearly wanted to get the hell away from me.

But here's the thing.

Once he gets to that school, and sees his baby girl on stage, he'll forget he's mad at me.

Tonight, I have committed to taking Jake to the Valentine's dance. Reilly has no interest in going, but Jake really wants to 'dance'. It has nothing to do with girls, he just wants to show off his moves.

There is no way in HELL that Billy will take Jake to a Valentine's dance, and the kids MUST be accompanied by a parent.

So I acquiesced, and I'm taking him.

Today, I wanted to be there for both my kids.

My body dictated otherwise.

I have until 545 pm to get my 'bowels' in order, so that I can take Jake tonight.

When this happens, it's always worse in the morning.

Billy knows this.

I really think he has gone beyond the 'resentful' stage, and is starting to hate me.

Could you please pray for HIM today?

And pray that this will all be over on Tuesday when he WILL start work?

Please?

I was so weak and so sick, just an hour ago, that I put up very little of a defense. I let him walk all over me.

And I feel defenseless and unprotected and completely out of control when it comes to my marriage.

I guess I just have to let him steam about it.

I can't ever 'prove' him wrong if I am in fact 'sick', since I did NOT 'make' myself sick.

It's not like he's Vince Lombardi and he can motivate me with a hot poker and I can get in his truck and just go there and prove him wrong.

Funny.

When I go to Remicade every 28 days, I have to do the 'scale of 1-10' for pain. I ALWAYS say, can I give you a 'misery' scale instead of a pain scale? And they say yes, and they write down the word 'misery' next to the scale.

MISERY.

That's my state today.

That's the state of marriage today.

That's the state of my life today.

Today, I'm not asking for prayers for me.

I can get through, TODAY.

Please pray for my miserable husband.

Please.

~

Lost

2011-02-08T06:21:00.001-05:00

~

No.

This is not another pathetic post about me and my stupid disease or how I feel 'lost' since I forewent my career, blah blah blah.

It's about the Great Depression.

The one that no one wants to admit is here.

The one that my family has been in for awhile.

So here's my story.

It's funny, in a way.

Back in the day, when I wore my $250 Kasper power suits and Aveda makeup and oh-so-smart shoes.

Back in the day, when I went toe to toe and head to head with the meanest, vilest, most evil men the world has ever known, and never blinked an eye.

Back in the day, when I had my monthly $80 hair colors.

Back in the day, when I had to put on my game face each and every morning, and be 'amped' for nine solid hours, and then have a one hour 'cool down' during my commute home, always spent on the phone either to talking to someone 'fun', or talking to someone about the battle planned for the next day.

Back in the day, when I was paid quite handsomely.....

to....

FIND MONEY.

Yep.

That was my job.

To FIND MONEY.

Hmmmm.

How does one, FIND MONEY, you ask?

Well, it's not so easy.

Which is why I was paid quite handsomely.

But I found it enormously challenging, and man, when I could come home at the end of the day, and tell my husband, "Hey! I found A HUNDRED THOUSAND DOLLARS today!", and he would stare at me bewildered and say, "How could anyone LOSE a hundred thousand dollars?" and I would say, "actually, it's much easier to lose a hundred thousand dollars on a HUNDRED MILLION DOLLAR job than you might think, but it's mighty hard to find it, once it's lost".

Yeah.

That was my job.

FIND US SOME MONEY, FALLON!

I would get these mean, vile, evil men in a room, and I knew they were lying, I knew they were sandbagging, I knew that THEY knew where the money was, and I didn't blink an eye during our twelve hour, no lunch break, no bathroom break, no water, no cell phone interruption, stare-down sessions.

And they'd never give it up.

But I found it.

Always.

Every single time.

Every single job.

Which is why I was paid handsomely.

And why I was employee of the year (once).

And why I NEVER EVER EVER worried about job security.

HAHAHHAHHAHAHAHA

That's the funny part.

Anyway, none of this is my point.

So here I am, NOW.

"We", meaning, my husband and I, have collectively been out of work for three years.

Yep.

Except for a short stint working on the oil spills in North Florida and in Michigan, (of which I consider to be my husband's service to his country, since he never had that opportunity in the past and has thought twice about it for a very long time), Two Swords has been unemployed since September, 2008.

I have not worked, without any stints anywhere, since February, 2008.

THREE years.

Now, the 'professional' financial guys will say, always have 7 months' salary in the bank, in case you lose your job.

Well, we did.

And they say, have a retirement fund.

Well, we did.

And they say, keep your debt to a minimum.

Well, except for a mortgage and a car payment, we were DEBT-FREE.

NOTE TO READER - I am getting nauseous as I write this post, because it just makes me sick to my stomach that we did EVERYTHING right.

And they say, have college funds for your children.

Yep, we had those too.

There was a time, when our 'plan', was for Two Swords to retire as early as possible, because we thought his heart condition could not withstand too many more years in high end commercial construction. The stress is unimaginable, which just brought on more and more cigarettes.

And then we 'planned' for ME to take on a heavier load at work, to take a risky position (cuz I wasn't as qualified as others for that job), to climb the ladder, as I had more room to climb than Two Swords did, and he would retire early, and by then the kids would be in middle school/high school, so he really wouldn't be a 'stay at home dad', and our house would be paid off in 12 years, and I would work, work, work, as long as my body would let me, cuz I wasn't as sick as I am now, and.and.and. that was 'our' plan.

Wasn't God's plan, clearly.

My body gave out, first.

We changed the 'plan'.

We had enough money, more than enough money, to live off of Two Swords' salary.

And if I was home with the kids, perhaps his world at work would be less stressful, as we were 50/50 parents - if one of the kids were sick and couldn't go to school, we would look at each other at 430 in the morning, and say, "TODAY, whose career suffers LESS if they stay home?" And some of those days, Two Swords stayed home. Some of those days, Two Swords took a kiddo to the pediatrician.

So we had a new plan.

And it was a good, solid, it's going to be okay plan.

HA!

And then the bottom dropped out.

In the great economic crisis of 2008, Two Swords lost his job.

BUT.

We did not panic.

Of course he would find work.

Immediately.

No doubt.

Tomorrow, in fact.

BUT.

I made (strongly encouraged) him to take a break.

He had worked himself nearly to death on a horrible, horrible project of a building that was halfway built and then nearly fell down, and OMG, I would look out the window of the high rise building that "I" worked in, and see if "his" building was still standing, each and every day, that's how scary it was.

He had worked 20 hour days, 7 days a week, holidays included, for 9 solid months, as they tried to get this building fixed.

And they did it.

He did it.

And then he got cut.

(Nauseous again. Reliving it is still sickening, three years later)

So he took a break.

We pulled the kids out of school, and took a two week trip to WV and took the kids to our nation's great capital DC, and he rested, and he renewed, and he was ready again.

AND - the whole time we were gone, he had his feelers out there, he was faxing resumes, he was setting up interviews for when we got back.

We got back.

He interviewed.

Do you know how many jobs he 'got' that never started, because the banks stopped lending money to projects in Central Florida?

I'm going to round down.

TEN

TEN times or more, he was hired.

For jobs that never started.

Okay.

So back to the title of my post.

My financial brain gears never stopped churning.

I calculated all that we had saved, added the unemployment that we would receive, and tried to figure out how much time we had before it got really bad.

I told him - we're okay.

I told him - it's going to be okay.

I told him - we've done all the right things with our money. All the 'smart' things.

I told him we had six months, before he had to 'worry'.

I was sandbagging.

I was doing what those evil vile devil men used to do to me.

I knew we could go a year.

I knew that if things got desperate (but of course they would NOT), we could go a year without touching our retirement or the kids' money.

We made cutbacks.

Out went the hair color.

And the College Football package on DirecTV.

And eating out.

And lots of other stuff.

Stuff that we haven't missed all that much.

Well, the kids have missed the restaurants, and the movies, and Disney World, and going shopping every weekend.

But they don't even know what 'poor' is, so i don't have much sympathy for them.

So a year went by.

How is it that Two Swords STILL does not have a job?

And I will not get into politics here, but man, you have NO idea how painful it was, to watch HIM watch Fox News each and every day. Nausea again.

Year two comes along.

Still here, still unemployed.

I have to start cashing things in.

I had to 'find money'.

I did.

First went MY retirement fund, because it was bigger, because I would pay less tax on it due to my medical hardship, because I didn't, and to this day don't, think that I would live long enough to 'retire'.

Still here, still unemployed.

Cutting back even more.

Year Three.

Still here, still unemployed.

Out went Two Swords' retirement fund.

We had no other choice.

And then went the kids' college fund.

Still here, still unemployed.

I went to 'work' in my brain, and found a hunk of money. Cuz, that was my 'job'.

Bought us another six months.

We have entered the beginning of year FOUR.

It's gone.

All of it.

We've unplugged our house phone, because every single call is from a bill collector.

Today, we received acceptance for food stamps.

Today, we received acceptance for Medicaid.

Today, I can't find anymore money.

It's lost.

All of it.

And every day is scarier than the day before.

The recession is not over.

And it's not a recession.

I'm no economist.

But I know alot about money.

We're not just lost.

We're depressed.

And I don't just mean me and Two Swords.

We are lost.

And if God doesn't throw yet another miracle our way, we are about to LOSE everything that we have.

LOST.

I used to be really good at finding money.

I can't find anymore.

~

Itching and therefore sccratching

2011-02-05T02:32:00.000-05:00

~

Okay, so I am really trying Super Duper hard to be positive, and to maintain a level of optimism, because things have been 'downnnnn' for so long.

BUT!

Can anyone tell me WHY?

WHY?

WHY?

All of a sudden....

At 2:28 A.M. on a Saturday morning in February,

Exactly TWELVE days since my last Remicade infusion,

That I am itching and scratching like a muthah-you-know-what?

SeriouslY?

Benadryl, atarax, Valium....whatever....

NONE of it is working, and I am itching, and therefore, scratching like mad!

I have scratched my arms RAW!

Oh.....

To have a disease that was understood.

Sigh.

~

!

Oh - Kay

2011-02-03T08:39:00.000-05:00

~

So.

Yesterday evening, I ran into my dear friend, the Greatest of All Bell Ringers.

She asked me how I was doing, since, well, she knew 'everything' that happened.

I took a deep breath.

And I said, "Oh-Kay."

And then I took another deep breath.

And she said, "Are you sure?"

And I took yet one more deep breath.

And I replied, "Actually....yeah. I'm Oh-Kay."

She still doubted me.

But I didn't feel like I had the energy nor the need to convince her.

Because I was kinda shocked that I actually said and actually FELT like I was

"Oh-Kay".

So.

I'm telling you all right now.

Yes, there are problems in my marriage.

Yes, we have been unemployed for three years.

Yes, we are pretty darn close to becoming homeless.

Yes, my body continues to confuse me, to tantalize me, and to agonize me each and every single day.

Yes, my body continues to confuse, tantalize and agonize my spouse each and every single day.

Yes, my treatments wreak havoc not only on my body and my life, but on my bank account.

Yes, I have 'lost' friends.

Yes, my extended family (with a few exceptions) continues to ostracize themselves from me, rather than embrace the fact that their previously super athletic and super strong and super 'go get 'em tiger' daughter is now a 40 year old special needs woman.

Yes, I have problems on a nuclear scale.

But.

I think I'm "oh-kay".

I am not shaking like a leaf anymore.

I am not eating four pounds of Oreos a day anymore (I've cut back to one pound a day!).

I am no longer afraid to speak to my spouse.

I am no longer afraid that my spouse is going to leave the marriage.

Actually, now that I think about it, other than waiting for the other shoe to drop, which I have done for about 34 years, I don't think I fear anything right now.

Of course things are not 'optimal'.

But then again, how many people who 'have it all', really take the time and look back and say, "hey! our life is OPTIMAL!"

Funny.

I knew a family who once felt that way.

That was my family.

That was us.

That was a very long time ago.

That was at a time when we were higher than a woodpecker's hole.

God had made our cup runneth over.

And yes, we looked around, up, and down, and we said, "We can't believe how 'optimal' things are for us right now!"

But.

We never lost faith.

That the other shoe would drop.

Which it did.

Maybe that was the catalyst for our conundrum.

Having faith that our 'glory' was temporary, and most certainly God would throw us yet another breaking curveball.

It's too deep for me to even think about.

Right now, I'm "Oh-kay".

And my kids are "AWE-SOME!"

Now those two little buggars don't wait for the other shoe to drop.

Ever.

Cuz we haven't taught them that learned behavior.

And I (we) COULD NOT be more proud of them, or love them anymore than we already do.

And we tell them that about 15 times a day, each and every single day.

Cuz our parents never did.

So.

I'm "Oh-Kay".

Today.

WHEN, (NOT 'if', but most certainly WHEN!), my spouse FINALLY receives employment, 99% of all of our 'troubles' will go away.

Some doubt this.

But I'm living it, so I have a little bit more inside information.

When this FINALLY happens, we will all FINALLY be "oh-kay."

It's been a long time, a very, very long time since I've been able to say these words.

Maybe it was the counseling.

Maybe it was the drugs.

Maybe it was menagerie that was my December.

I dunno.

But I am able to sit right here, on a dark Thursday morning, and say to YOU, and believe inside of ME,

that someday,

someday,

hopefully sooner

rather than later,

WE are all going to be "oh-kay."

I have to believe it.

It's all i've got to hang onto right now.

And it's enough.

~

Oreos

2011-01-12T23:02:00.000-05:00

~

Yeah, sorry I've been quiet for awhile.

Believe it or not, for those of you who 'know me', I really have been quiet for awhile. For so many reasons, that there just isn't enough Valium. So there you have it.

I've kinda just hunkered down in my 'hole'. That would be my 'house'. Or as I lovingly refer to it as my 'sanctuary'.

The spouse thinks I'm whacked cuz I never want to go anywhere.

Oh, I'm whacked.

Ain't no doubt about THAT.

But, as a non-licensed psychotherapist who has walked as many miles as Methuselah blew out candles on birthday cakes, I'm going to claim 'expert' on this one.

I like to be 'here', because it is S A F E.

S A F E is not a feeling that is learned.

S A F E is not a feeling that is acquired.

S A F E is not a feeling or an emotion that one exclaims, "Gee! Gosh! Golly! I sure do feel S A F E today!"

If you feel S A F E, and there was ever a time in your life when you felt UNSAFE, then you know exactly what I'm talking about.

Those around me, those who care for me and those who care of me, they have EARNED my feeling of S A F E .

It's a whole other ball game than TRUST.

I am entitled to feel S A F E.

Like Oreos.

They make me feel S A F E.

An Oreo has never frightened me.

Not once.

Not ever.

Don't see it happening.

It is never a foregone conclusion that I have, or that I must TRUST.

But if you are my friend, and I feel S A F E around you then you EARNED it.

And during those times (far more frequent than I ever let on, or than I allow myself to feel) when I feel U N S A F E, I look for the nearest exit. I instinctively track down my children. And we GET THE HELL OUT OF WHEREVER IT IS WE WERE AND WE GO HOME TO OUR SANCTUARY.

I decided to write this tonight, because even though I haven't been to very many public gatherings, it's not because I'm any more ill than I have been, nor because I'm any more mental than I have been, nor because my life in general sucks any less that it has.

It's because right here, in my sanctuary, I feel S A F E.

With my Oreos.

Which leads me to a question.

So, you know how (well maybe ya don't) your doctor will ask if you have blood in your stool, and you say no, and he says, is it black, and you say, yeah, and he says, well then you have blood in your stool? ANyone, anyone, Bueller?

Okay, fine, so all of you are lying. It's cool. I won't tell.

But here's my quagmire.

My stool is black. Really, really black.

And I hate my doctor. REally, really hate my doctor.

But......

I'm wondering..............

Is there a chance that my stool is black because Publix had Oreos on BOGO last week and I single handedly ate all FOUR pounds of Oreos by myself this week?

Could it be?

Like, if, since the Oreos aren't BOGO anymore, and I've eaten like ALL of them, and my stool is no longer black, can I then successfully complete my very own if/then statement: if my stool is no longer black, then it must NOT have been the oreos! And if it was not the Oreos and my stool is no longer black, then it must NOT have been blood! And if there was no blood, then there is NO reason to call my doctor whom I hate?

Whaddya think?

Do I have a future as a logician? Is there such an occupation? If I stop eating Oreos, I mean.........

Reflecting

2011-01-06T22:30:00.000-05:00

~
So.

I haven't gone away. Don't worry. You're stuck with me. For now.

I'm being rather quiet. Shocking. I know.

I'm reflecting.

On the past 30 days, and the rage, and the range of emotions, and digging deeper...... the whole conundrum.

Yeah.

Quiet and reflecting.

Focusing on my health (another blog forthcoming),

Focusing on my pirates and their homework and their projects and their extra curricular activities and their loose teeth and their too long hair and their every growing need for shoes....and....

Life as we know it.

I've realized that everything I've ever publicly reported is basically this thing called 'life'. I justn't haven't been able to wrap around the enormity of my 'life' vs. the minisculity of someone else's 'life'.

And during my reflection, I just wonder, sometimes out loud to God.

'I know there are reasons. I know YOU know what you're doing. But I don't know why. And I really wish that maybe perhaps sooner rather than later, that you could hand the ball of to to someone else. We/I have been holidng it for a very long time now. Could ya maybe give the ball to another a ball carrier, just for a little while? So maybe they could learn some of the play by play?

Maybe?

That's been my today's reflection.

~

O V E R

2010-12-25T00:42:00.000-05:00

~

It's O V E R.

God worked it out.

I lost 'it' a few days ago.

Wasn't sad.

Wasn't hormonal.

Didn't cry.

Sighed.

A HUGE sigh of relief.

Cuz now I don't have to worry about the WHAT and the WHY and the God Almighty HOW.

You can call me cold.

You can call me the Ice Queen.

Lord knows the Golden Seed Provider does.

I think God worked it out.

You can think whatever you want.

I'm not sorry that I'm relieved.

I'm not sorry that I'm not horribly, horribly, horribly sick as a Roman in a vomitorium anymore.

I'm not sorry that 'it's' over.

I'm not sorry about any of it.

Not the curse words against the Virgin Mary. Or I guess God for that matter.

Cuz I never did anything wrong.

In fact, I did everything R I G H T.

I kept my promises to all my doctors.

I did not explode when the Golden Seed Provider questioned "Whose is it?"

I went to counseling (and I will continue to go).

I tried to act like everything was 'normal'. (Yeah, what exactly does 'normal' mean for ME? If you figure that out, let me know.)

I sought help, guidance, prayer, consultation......

I stopped taking medicines that helped me, in order to protect an unborn, even though the withdrawal was horrific for my body.

I HAD MY TUBES TIED, OR COILS IMPLANTED IF YOU WANT TO BE UBER SPECIFIC.

The only thing I did NOT do, was act joyful.

But....

No one else who heard the news acted joyfully either.

And for that...

I am thankful.

And I am thankful that God made a potentially agonizing journey very short indeed.

I hadn't been praying in a couple of weeks, cuz, I had no idea what to pray for.

Strength.

Yeah.

Everytime I think of praying for strength, my dear friend and respected counsel, PJ, comes to mind with his quotation of scripture, "there is strength in weakness."

I offered praise when it was over.

Even though it hurt really, really, really bad for a day and a half.

I didn't really care about the physical pain.

I was so very relieved.

Still am.

And if that makes me a horrible, horrible, horrible menace of a person, then..

So be it.

Walk a mile in these shoes.

Forget it.

Walk half a mile.

Nah.

Just tread to the mailbox.

Dare you.

Encourage you.

ENTREAT you.

And then you can judge me.

For now, it's Christmas.

Birthday of Jesus.

I've got my two miracles.

They are sound asleep right now.

With sugarplums dancing in their heads.

Two miracles are enough.

For now.

Merry Christmas.

~

What-What-What-What-Why and Finally, HOW

2010-12-21T15:55:00.000-05:00

~

So.

It's been a couple of weeks.

I'm not so angry any more.

I went from:

WHAT?

WHAT?

WHAT?

WHAT?

meaning, of course, WHAT THE HELL???? (or worse, but I'm trying to cut back on the vulgarities, just because, well, I dunno)

to:

WHY?

meaning, WHY THE HELL? (or, of course, worse).

to:

HOW?

meaning, HOW THE HELL AM I GOING TO DO THIS?

meaning, HOW CAN I PHYSICALLY DO THIS?

meaning, HOW COULD THIS HAVE HAPPENED, AND HOW I AM I GOING TO DO THIS WHEN I CAN'T EVEN GET OUT OF BED MORE THAN SOME DAYS AND I CAN BARELY TAKE CARE OF THE MOST BASIC OF TASKS LET ALONE REALLY TAKE GOOD CARE OF MY ALREADY TWO KIDS HOW THE HECK AM I GOING TO DO THIS?

And please don't tell me with God's help.

I mean, yeah, maybe.

But PHYSICALLY?

Not.

I have no idea HOW I am going to do this.

NO clue.

Not one.

~

The Angel Moroni

2010-12-17T02:14:00.000-05:00

~
So.

For those of you who don't know, my foursome took the trip of a lifetime last year, and drove 8,000 miles, 23 states, in 40 days.

To say the least, it was totally awesome.

Anyhoo.

In one of our stops in the Southwest (Arizona? Nevada? New Mexico?), I discovered a Book of Mormon in one of our hotel room drawers.

No Bible.

It's not as if I ever go searching for the work of the Gideons when I stay at a Holiday Inn Express last night, I don't.

And it's not that I don't own a Bible or read a Bible, cuz I do.

I was just opening a drawer to unpack our suitcases.

Granted, this was my first time in Warren Jeffs' country, but I had never, ever been in a hotel room with a Book of Mormon in the drawer.

For some crazy, (oh, most definitely crazy, cuz I'm crazy on the loonar scale, big time), I grabbed that Book of Mormon like a hot poker and threw it in the trash.

Two Swords screamed, "What are you DOING?"

I replied that I thought I was doing what God would want me to do, and I was just taking care of it for him.

Two Swords swore that I was going to be struck down by lightning. Actually he said something like, "Someday, this one is going to come down and BITE you in the ASS!"

I wasn't buying it.

Then he said, "How would YOU feel if someone made it their life's mission to go around to every hotel they stayed in and take the bibles out of all the drawers?"

I didn't argue with him.

The Book of Mormon stayed in the trash.

And my eyes stayed WIDE OPEN all night long.

Didn't sleep a wink.

Kept staring with one eye on the trash can, and one on the door.

As if the Angel Moroni himself were to come and pay me a visit in the middle of the night and be some kind of Death Eater and snatch up my soul.

But alas, dawn broke, the Book of Mormon was still in the drawer, and there was no lightning.

But.

I had second, third abd forth thoughts.

And yes, went canvassing the grand canyon that is in facet with my life,

And now,

Now....

~

BM - Phone Home

2010-12-16T12:54:00.000-05:00

~

So another sage friend has suggested that I get in touch with,

of all people,

Beth Moore.

Ummmmmmmmmmmmmmmmmmmmmmmmmmmmmmmm

Anyone got her number?

Email address?

Suggestions as to how I stalk her without stalking her?

______________________________________________________________________________

Today, the spouse and I are headed to counseling.

Me for the second time (well, actually for me it's probably the eleventy thousandth time, but second time THIS go around).

Him, for the VERY first time.

Anyway.

Today, he is being very nice to me, so today, I will refer to him as my spouse, and not the golden seed provider.

Since he's actually going to counseling only tethered by a figurative ball and chain, not the literal shackles and cannonball.

So for those reasons, I'm giving him a promotion today. Or, less of a demotion. However you want to look at it.

__________________________________________________________________________

I'm not so mad today.

I'm puking my guts out today, but I'm not soooo mad about it.

I really don't want to get out of this nice warm bed.

I really, really, really don't want to take a shower.

I really don't want to get dressed and get in the car and drive the five miles to a place where I am certain I will have to have my 'game face' on before I open the door and walk down the hall.

I really don't want to use yet another box of kleenex today.

I really don't want to have an incredibly splotchy face for the rest of the day.

What do you want, Heather?

I really, really, really, want this to be O V E R.

Yep.

That's what I want.

And once again, God said HA!

~

You MIGHT Be An Alien.........

2010-12-15T11:52:00.000-05:00

~
So.

My own biological mother just wrote this to me in an email:

"If someone told YOU, YOUR life story, YOU might look at them like THEY were an alien."

Sit on that one for a second.

She wrote that to me in response to my telling her.......

that yesterday......

I met with a Christian counselor for the first time.

And as I was telling him my current story,

my last year's story,

my last three year's story,

my last 11 year's story,

and then of course,

my life story,

he took like 12 pages of notes,

ran out of ink in his pen,

switched pens,

wiped his brow,

and replaced his eyeballs with a new set he had in his briefcase because his orginal pair popped out of his freaking head as he looked at me like I was a six headed alien, while fashionably dressed, extremely well spoken and educated, cuter than a root (as my good friend Sally the Pilates instructor would say, even though I never new roots could be cute but whatever, she's a real southerner while I just pretend to be one),

but a six headed alien nonetheless.

Guns and Roses

2010-12-15T11:44:00.000-05:00

~

Just happens to be my favorite rock group of all time.

Not that you care.

Sweet Child O Mine just so happens to be my favorite song of all time, and for those of you who have been unfortunate enough to work with me in a tight cubicle setting, you are painfully aware that it is the only ringtone I have ever had on my cell phone.

Not that you care.

But today,

today,

the song "patience" is ringing in my head with a vengeance that just will NOT stop.

"All we need is just a L I T T L E patience................"

Yeah.

I am NOT talking about ME!

I am talking about that infamous golden seed provider who just happens to be my spouse.

Dammit.

I'm sorry that I can't get off the couch.

I'm sorry that I can't stop throwing up.

I'm sorry that I am completely and utterly worthless to you now, and perhaps, for a really, really long time.

I'm sorry that this has happened.

I'm sorry that YOU are having to go through with this.

I'm so very sorry that YOUR world is completely spun upside down on its axis, and that your North Pole is now your South Pole.

I'm sorry that our marriage is such a ridiculous sham that you did not believe that this could in fact be a result of your golden seed.

I'm sorry that we are not picking out names and furniture and jumping for joy and calling all our friends and family and running hand in hand while doing the irish jig version of the we're off to see the wizard the wonderful wizard of oz happy dance.

and yes.

yes.

yes.

absolutely.

I AM FUCKING SORRY THAT I AM PREGNANT!

There I said it.

NOW what do you want me to say, seed provider?

What?

What?

What?

There's a WHOLE lot more I would like to say, believe me.

But I'm supposed to be a loving, supportive, submissive wife.

I'm supposed to honor that golden seed provider at any and all junctures.

But if I'm supposed to be the gazelle of Michelle "I've had EIGHT THOUSAND BABIES AND I HAVE CARRIED EVERY SINGLE ONE OF THEM AND I DON'T THINK I HAVE EVER SAID NO TO ANYONE ESPECIALLY MY OWN TRIPLE GOLDEN SEED PROVIDER HUSBAND IN MY ENTIRE LIFE" Duggar, and stare at him lovingly at all times and just joyfully exclaim, "IF GOD WANTS ME TO HAVE EIGHT THOUSAND BABIES, THEN BY FUCKING GOLLY I WILL CARRY THOSE EIGHT THOUSAND BABIES JOYFULLY! EVEN IF IT MEANS I WILL

DIE

DIE

DIE!",

well, sorry.

I just can't.

I guess I don't have the patience right now either.

This is so much bigger than me dudes.

SO bigger than me.

AND bigger than the golden seed provider.

AND bigger than the both of us together on a GOOD day, of which, there are not so many.

Real

2010-12-14T23:42:00.000-05:00

~

NOTE TO THOSE WHO DARE TO READ FURTHER:

You are about to read what may perhaps be the only written account of the birth of our Lord and Savior depicted with the use of about eleventy expletives.

It's my damn blog.

It's my damn life.

Scared?

Go away and don't read it.

I've never touted myself as the Virgin Mary (yeah, okay maybe I did).

Consider yourselves warned and govern yourselves accordingly.

I'm shaking my angry fist at God, and dammit, three freaking pastors and eighteen Christians and a whole freaking Bible have told me it's okay and I have yet to be struck down by lightning, so there.

You want cookie cutter Mommie Bloggie It's off to see the Wizard crap happy happy joy joy?

This blog ain't for you.

__________________________________________________________________________________

Heather.

I want you to write about it.

You NEED to write about it.

But I don't want to write about it.

But why don't you want to about it?

You're such a great writer.

A really really great writer.

I really don't want to write about it.

You should write a book.

About your whole life.

Yeah, I've heard that a thousand times.

Then why don't you write it?

Because I just can't imagine that anyone would want to read it!

I mean, ME, I would NOT want to read it.

And ME, I love the freaks.

I studied the freaks.

I worked with the freaks.

Shit.

I AM a freak.

I AM a living, breathing, Saturday-night-LIFETIME-movie-of-the-week-freak for Christ's sake.

I am EVERY SINGLE SATURDAY NIGHT, LIFETIME MOVIE OF THE WEEK that has ever been aired.

Let's run through the marquee, shall we?:

RAPED AT FIFTEEN
ABANDONED AT FOUR
TELL OR DIE - FUCKED AT SIX
HOW NOT TO SAVE A TWO YEAR OLD BOY FROM BEING MURDERED BY HIS MOTHER
TELL ME NO LIES - THE ALCOHOLIC WHO LEFT ME
AND THEN SHE GOT SICK
YOUR BABIES WILL DIE

Who watches that crap?

Who wants to read that crap?

You need to write it because it has made you wise.

Oh buoy.

Wise?

_______________________________________________________________________________

Yes, wise.

He's right.

Wise.

And now I realize, the titles aren't complete.

They actually go something like this:

RAPED AT FIFTEEN - and lived to tell about it.
ABANDONED AT FOUR - yet loved again.
TELL OR DIE - FUCKED AT SIX - redeemed through justice and saved by God.
HOW NOT TO SAVE A TWO YEAR OLD BOY FROM BEING MURDERED BY HIS MOTHER - she couldn't save the world's abused children, but she saved herself.
TELL ME NO LIES - THE ALCOHOLIC WHO LEFT ME - and made room for the love of her life.
AND THEN SHE GOT SICK - but she didn't die.
DEATH BECOMES HER - 'cept not.
YOUR BABIES WILL DIE - but they sure as heck didn't.

___________________________________________________________________________________

Yeah.

I need to become more grateful.

I need to see the joy in the small things.

__________________________________________________________________________________

How 'ironic'?

Is it.

That we.

Struggled.

To Conceive, Birth, Raise and Adore Those Babies Who Were Supposed to Die.

Only to Expect Another.

That We Don't Want.

_________________________________________________________________________________

Sounds like a poor orphan girl named Maria.

She didn't want that baby.

She damn sure didn't want that baby.

Heckfire, she got pregnant and never had an orgasm.

Now THAT would suck.

Poor, unmarried, pregnant.

A virgin.

She probably thought:

ARE YOU FUCKING KIDDING ME?

SERIOUSLY?

WHAT THE HELL?

REALLY?

REALLY?

REALLY?

AND YOU WANT ME TO DO WHAT?

CARRY THIS 'BABY' WHO ALLEGEDLY IS A MESSIAH WHO WILL SOMEDAY SAVE THE WORLD,
CONVINCE MY CARPENTER BOYFRIEND THAT I REALLY AM THE VIRGIN MARY WHO IS PREGNANT WITH A MESSIAH FOR CRYING OUT LOUD, HOPE THAT HE DOESN'T ASK ME WHOSE BABY IT IS CUZ I REALLY DON'T FUCKING KNOW HOW THIS HAPPENED, THEN GET ON A FUCKING ASS, I MEAN DONKEY, RIDE THROUGH THE FUCKING DESERT GUIDED BY THE GPS OF A REALLY BIG ASS STAR, AND GIVE BIRTH LAYING IN A BUNCH OF HAY IN A FUCKING BARN WITHOUT AN EPIDURAL SURROUNDED BY SHEEP AND A TRIO OF WEIRD GUYS IN CROWNS BEARING GIFTS THAT AREN'T CHOCOLATE AND THEN HAVE TO GET BACK ON THAT ASS WHEN AN ALLEGED MESSIAH WAS JUST RIPPED FROM MY FIFTEEN YEAR OLD VAGINA?

SERIOUSLY?

Yeah, now that I have written it down....

Now that I realize,

I am not in fact the Virgin Mary.........

Now that I see that no,

I am not in fact pregnant with a messiah.....

Nor will I have to ride an ass in the desert neither before nor after having my vagina being ripped to shreds....

Nor have to endure life without an epidural nor any other drugs for that matter......

Now that I see in fact,

The most difficult thing I have had to do thus far was convince my carpenter husband that yes in fact this non messiah was going to be a spawn of his extremely rare seed........

Now that I see it.......

It has become.......

REAL.

Which is precisely why I didn't want to write it down.

If I write it down........

Somehow it becomes more real......

More real than the morning sickness......

More real than boobs which have suddenly become huge and incredibly painful....

More real than the reality that this is potentially the most frightening thing that has ever happened to me....

More real than the total and complete improbability that I am in fact 'with child'....

More real than the realization that for such an agonizingly long time I yearned for this what should not have happened to in fact be happening....

If I write it down, it somehow becomes

R E A L.

....And I'm the Virgin Mary

2010-12-14T21:17:00.000-05:00

So.

Have you ever said to someone, "Oh yeah? Well I have a Bridge in Brooklyn to sell you?"

Or........

"Yeah right! And I'm the VIRGIN MARY!"

Well.

Hi.

I'm the Virgin Mary.

Perhaps I should start at the beginning...........

So.

Gosh, this is so much harder than I thought it would be.

HA!

Brothuh!

YOU don't EVEN know!

Here's a simile of a phone message I left earlier today:

"Hi. Haven't talked to you in awhile, and sorry I only call when 'stuff' happens, but yeah, I kinda have another 'bomb' to drop on you. Ummmmmmmmm.

I'm pregnant.

And I promised my doctors I wouldn't have anymore babies.

And I had my tubes tied two years ago.

And I'm on methadone.

And a whole lotta other crap.

And I had my pieces/parts surgically deconstructed and reconstructed, to repair the damage that my oh-so-complicated disease and oh-so-complicated preganancies did to my oh-so-beaten-and-battered-and-broken body THREE years ago.

And I'm forty.

And most days I really struggle with getting out of bed every day.

And.

And.

And.

Oh.

Yeah.

And my husband and I have been 'completely' intimate

ONE

TIME

IN

THE

PAST

YEAR.

So, yeah, um, that's my message."

Hi.

I'm the Virgin Mary.

~

'before'

2010-11-16T01:46:00.000-05:00

~

So.

Today, one of my oldest and dearest friends, Marguerita, checked in on me by asking very concernedly,
"How Ya Doin?............."

As she is one of my oldest and dearest friends, I know that she was reaching out to me because I've been, say, um, kinda 'out of the picture' lately.

Haven't been out and about.

Haven't been Facebooking.

Haven't been blogging.

Haven't been........a whole much of anything.

One would think that Marguerita's simple question could be, in fact, simply answered.

But then again, we're talking about ME.

Ugh.

Honestly, she could quite possibly be the only person in the whole world who might even be able to understand, cuz, she's like the one person in the whole world who has known me the longest.

She knew me 'before'.

'before'.

you know.

when i was super smart, and super hot, and super healthy, and super twenty-eight, and super active, and super cute, and super tiny, and super sassy, and super successful, and super spinning the world on its side.

'before'.

'before' I got sick.

There is so much that has happened.

I have become this, this, being, I don't know even know what or who it is.

Yeah, I could end up writing for hours, so if I do, I'm sorry.

I've been watching A LOT of Dubya on TV lately.

Because he's my super secret crush, and I think he's a super american hero, and I just wanna hug him and tell him i love him and we all love him and i'm so sorry for how WRONGLY he has been treated for the past 10 years.

And because what he says INTERESTS me, because you know, 9/11 was OUR Pearl Harbor, or OUR Vietnam.

9/11 was you, and me, and it is such a vital part of our history and our currency, and it is IMPOSSIBLE to explain it to my children, and they are geniuses.

So where was I?

Oh yeah, yummy Dubya. Right.

So his new book is all about Decision Points.

I'm sure you've been listening or watching or whatever, so I won't go into it.

But in the past few weeks, I've seen that my own life has its own Decision Points.

No, I ain't no freaking George W. Bush, or Axis of Evildoer Killer or anything like that, don't worry, I'm not delusional.

And you know my life history, so I don't need to rehash that crap, and you know I'm a Christian, so just kinda put that in the Bible and close the book for a minute and just kinda absorb what I'm saying, because it could easily be taken out of context.

So here it goes.

I am a horrible wife and mother.

BUT -- I USED TO BE an AWESOME wife and mother ...and...and....and....

I don't like to clean up people's messes.

I don't like being responsible for two kids a dog a husband and myself for 100% of everything.

I don't like to mop, or dust, or sweep, or cook, or mend, or......I freaking hate it.

Sorry.

I absolutely HATE being a stay at home mom.

Now, breathe for a second.

I love my children like God loved Jesus, and you know I do.

Those two miracles were ripped from MY loins.

I know their cries, I know their laughs, I know every scar on their bodies, and i know where they came from, and I can tell you when and how it happened, and maybe even what they were wearing that day.

I love to brag about my kids.

I love to laugh at 'em and with 'em.

I love to help them with their homework.

I love when they ask if they can crawl into bed with me and watch "Billy the Extermintator" or "Fox and Friends" (true story - Jake has the hots for Gretchen Carlson).

I don't have to tell you how lovable my kids are, you already know.

But, to borrow from the title of a really bad book and movie, there have been a series of unfortunate events.

Let's just say that last year sucked. Big donkey balls.

Death, disease, death, destruction, near death, horrific accidents, marital meltdowns, and watching my daughter DIE in the arms of her father, only to come back to life three minutes later.

So yeah, that one day in April sent me and billy both into a potentially unrecoverable tailspain.

I think I had PTSD, I really do.

Our marriage began its dissolution right then and there.

Our daughter lived (thank you, thank you, thank you GOD!), but a whole lot of 'us' died that die.

And no, of course not, it doesn't make any sense.

And nope, the resident psychologist who always has the answers for everyone else, can't get herself or anyone else around her 'fixed'.

But of course I thank God that my baby girl is currently sound asleep in her bedroom, tucked in with her 9 year old baby blanket, still sucking her thumb at night, an outrageous mop of curls on her head, and a gorgeous 'new' smile since her teeth have all come in.

Of course I do.

Where the heck am i going with this?

Remember when I got married to this guy that nobody would have ever thought would have been the one for me?

And then how suddenly, tomboy Rojo started wearing makeup, and coloring her hair, and deciding that maybe it was okay to look like a pretty girl, and hey maybe having kids would be kinda neat and then omg, I am twenty nine years old, I must have babies right freaking now to..............AND THEN I GOT SICK.

Yeah.

And that's my struggle.

Daily, hourly, weekly, constantly, whichever adverb you choose to use.

On February 28, 2008, I gave it up.

I stopped pretending that I could be Super Mom, Super Wife, Super Employee,Super Poster Child for the Chronically Ill Who Can Still Do It All!!!, Super Deacon, Super Friend, Super Daughter, Super Aunt, Super Human who always writes thank you notes and gets her Christmas cards out by December 1st every single year.

I stopped.

Because God told me to.

simple as that.

Because if I didn't stop, I was going to die.

And those two babies would never know any part of me.

And Up until that day in time, I had successfully hidden my Crohn's from the kids.

But on that day, God told me to stop, and i did.

I stopped trying to be anything BUT a wife and a mother.

And i did it to save my life.

And to save my family.

At the same time, I LOST the very person who I had BECOME.

It has been over 2 years.

I ache to be able to be 'her' again.

A normal person.

One who works HARD to provide for her family.

One who enjoys venturing out of the home.

One who simply likes to be around her friends and laugh at people named Beavis.

One who causes so many problems due to her 'combative' nature that there are never enough hours in the day to fix the damage which my mouth hath wrought.

I haven't gotten her back yet.

And the older I get, the more torture my body endures.

Every day, there is less I am able to do.

I can't get down on the floor and play with my babies.

I can't give my son the little brother he so desperately wants and most probably deserves.

My illness has advanced beyond science.

I'm just kinda biding my time, waiting for technology to catch up.

In the meantime, so very much has been lost.

I had even stopped praying for awhile.

We had simply run out of money.

I couldn't even afford to have a treatment, that's how bad it had gotten.

Thankfully, some funds were raised, and we're okay for a little while.

And hopefully, Billy will start at a 'real' job soon.

And maybe just maybe, GOD willing, I will receive acceptance of my 2+ year disability claim.

And perhaps, I may even regain my joie de vivre again.

But right now, how am I doing?

Well, I'm sad.

I'm sad that I'm 40 and that I'm 65 pounds overweight (thank YOU prednisone!).

And I'm sick.

And I hurt.

And I've started to give up.

And I don't really engage with people anymore.

You might say it's depression, I call it avoidance.

I don't have anything witty to say or any clever conversation to offer.

And I'm angry.

And resentful.

And confused.

And so very, very, very .......... tired.

I just realized something.

You're probably reading this and thinking, "Heather is so freaking incredibly selfish just because she is sick all the time, and OMG who does she think she is, cuz my friend DIED and his kids don't have him at ALL and she sure is selfish..."

You're right.

I should'nt have written any of this.

I should have just lied and told you "GREAT" and glorified God even though he knew I was lying.

I love you Jayne, and I don't make any sense to anyone anymore, even myself.

But I had to see a court appointed shrink for my SSI claim a couple of weeks ago, and well, it's kinda hard to explain to a stranger that "this Heather was like THIS", and "this Heather that you see today is simply not the same person" and then I started bawling telling her how I was this totally awesome career chick who was totally meant for greatness and how I used to go home to my totally awesome apartment and run for three totally awesome miles every day before I went to the mall to pick out a new pair of sexy shoes before me and my friend Jaynie would go pimping downtown, before...

........before I got sick.

My life used to have a dividing line of , 'and then I met billy'.

Now, my life span has been divided by these four words:

"before I got sick."

Anyway, this shrink said that most people don't understand that oftentimes we don't get to choose our life, that life chooses us.

When you read that statement over and over, it sounds pretty powerful. And even more powerful if you add, "that GOD chooses our life for us."

AND RIGHT THERE LIES MY CONUNDRUM.

The root of my problem.

The bane of my existence.

The whole "God has a plan" nonsense that spills out of my mouth more than anyone else's, in a desperately vain attempt to remain upbeat and positive because that's what everyone ELSE needs to hear.

GOD CHOOSES US.

GOD told me to stop working.

I don't know what he wants from me now.

My body has been taken from me, bruised and battered and beaten.

My marriage has been crumbling like old crusty bread.

My children may soon join their parents as some of 'those' people who are homeless.

Nope.

Never saw this coming, mates,

Thought all my battles were behind me once I hit the smooth stride of my late twenties.

I had no idea that once I joined in to take up the cross, that my life was not beginning anew, but it was damn sure gonna change.

So. FINALLY, in answer to Marguerita's question, I guess I would have to say that...I'm doing okay, we've been through some rough stuff, but we're all still together, and the kids are doing awesome and I hope they love me a little bit, cuz I love them tons and tons and the house sure is lonely while they are gone at school and i love watching Jake play teeball and i love hearing Reilly sing old timey gospel music in a trio at church, and my the sight of my husband still makes my heart spin even though life has pushed us away from each other and we haven't a clue how to reconcile it back, but hey, we're all still here, still in the same house, still blessing our bread before supper, still sitting in the same pew on Sunday mornings, still gladfully tithing and constantly seeking Him.

Yep.

That's what i should have to your question.

Like A Rubber Band. SNAP!

2010-05-20T01:08:00.000-04:00

I had my treatment today. My nurse, her name is Sue, is an amazing woman of faith. In the Remicade lab, there are nine chairs, so they can administer Remicade to nine people at a time, rotating at 30 minute intervals, because most people come in, get their drug, and are gone in two hours, as they are NORMAL people who aren't allergic to the only medicine on the planet that can keep them alive. So there is always someone coming and going. Sue has one other nurse who assists, but Sue is the MAN, if you know what I mean. When I go there, she always has me set up in the same seat. Way in the back, the seat furthest from the door, furthest from the phone, furthest from any extraneous stress. This chair is next to her desk. I receive one-one nurse/patient care every time I receive an infusion. Because, Sue says, I like Sue so much, I like to hang out with her all day. Oh, and because I'm special with my allergic reaction to the drug and all the means and methods she has to use to make sure I survive each and every infusion. But I do like to hang out with her, and you would too. She is amazing. She has an illness too. And it's chronic. So she KNOWS. But YOU wouldn't know it if she didn't tell you, or if i hadn't just spilled the beans, cuz no matter how much pain she is in (and yeah, it's a lot), she is always smiling, always nurturing, always THERE, always giving praise to God, even for the smallest of things like getting an IV in on the first stick. No, you wouldn't in a million years know that my very special angel nurse suffers horribly each and every day. Not til I just spilled the beans anyway.

When I am there, Sue tells the other nurse, that she is on her own with all those other patients for the entire length of the day, or until I am gone, unless there is an emergency, because I am so 'special' (allergic). Every single time, Sue takes both of my hands in hers, and warms them with her loving touch, and asks by name about Jake, Reilly, Billy, Aunt Meredith, church, all the OTHER parts of my life. She calls this our 'girl time'. She says she wants to know what's going on in my life before she shoots nine vials of poisonous, potentially fatal, rat venom into me. Well, today, she sensed that i have been an emotional wreck. And when she took my hands today, well, I cried a river. She told me that it was a safe place, it was just her, and me, and God, that I didn't have to worry about anything else that was going on in my life like taking care of Jake or what time will my ride be here or how in the world are we going to make our mortgage payment this month.......or.....or.......there was no or, I was in her hands, she would take care of me body, heart, and soul, that she wasn't just my nurse, she was my friend, she was my caregiver, she was in this war on Crohn's with me for the long haul, as she has been for seven long years, and that these thirty minutes with her had been earned. So she knew exactly what questions to ask (because in case you didn't know this, i usually don't scream my problems like a walking billboard), to get me to share. And I trust her implicitly, with my life, not just because she is a nurse, but because she is also my sister in Christ. So I let it all out. And I told her everything. And she listened as she kept massaging my hands and arms (yeah, I know, she was just trying to get a vein ready, but still, she does it with love), and she offered what she could when she could. And she shared. And she opined. She knows Billy as well as she knows me. she knows and loves my babies and she has never met them. And she offered something ingenious, that I hadn't quite thought of to the extent she was suggesting. And when she shared her angle................

SNAP!

My precious family has SUFFERED for two solid years. I got sick and then I lost my CAREER and then I became a stay at home Mom, something I never thought I would be, a role I am still adjusting and adapting to, and most probably, mightily failing at.
But I knew we would be okay financially, as Billy's salary was more than enough to meet our needs. We had been blessed financially, for quite some time.

SNAP!

Billy lost his job two months later.

SNAP!

For two years, we have lived off of our Biblical savings, unemployment.............

SNAP!

We had to cash in our investments, all of our 401k.

SNAP!

Last went the most painful of all, the kids' college fund.

SNAP!

Two years of constant prayer and reverence. Believing we were following God's plan, because He continued to affirm, confirm, and re-affirm. Any time we questioned, He gave us an answer, and He gave it promptly. We were on a new walk with God, together, and we had faith that He would reveal to us HIS plan, on HIS clock.

SNAP!

I received a misdiagnosis of lymphoma.

SNAP!

I received a correct diagnosis of an untreatable exacerbation of my Crohn's. I repeat - UNTREATABLE.

SNAP!

Not just physical suffering, but financial suffering, with no break, except for the trip of a lifetime. 40 days. 8,000 miles. Across this God-loving country of ours, filled with great plains, mountains majestic, canyons unspeakable, people of faith. A trip that was SAFE. A trip that did not require medical attention. Memories forged for a lifetime, shared only by we precious four. An unplanned, spontaneous road trip that we all know God directed us to take.

SNAP!

But as soon as we got back from that, Billy's dad, Robert, had his horriffic, nearly fatal accident.

SNAP!

And as soon as Billy got back from that, he drives his best friend a thousand miles to his death bed. Oh, the burden placed on my husband's mind, spirit, heart, soul, and body, to drive his oldest, dearest, and longest friend to receive emergency, life-saving treatment. The burden and blessing of spending 35 years of life with this man and the last 48 hours as he approached and succumbed to death. And to do it alone, but with "Jesus at the Wheel". Oh how he ministered. How he witnessed. How he prayed to God to get them 'there' in time. How he prayed to God for his friend's salvation. Oh how he watched him die.

SNAP!

And as soon as he got back from that, Billy's father Robert is diagnosed with a cancer that was treatable, but not beatable. And which horrifically murdered him within 20 days.

SNAP!

Oh how we raced to get to see Grandpa, before..........

SNAP!

And we stayed behind, trying to discern what was right for Grandma, for us, for the rest of the extended family, mulling and praying and mulling and praying do we go home or do we move here do we go or do we stay do we go or do we stay, and grieving all the time, sitting in Grandpa's chair, watching Grandpa's TV, riding Grandpa's 4 wheeler, the four of us sleeping together, Little House on the Prairie-style in Grandpa's HUGE four poster bed, with room to spare, snuggling to warm each others' bodies from below freezing temperatures, and to somehow warm each others cold and empty hearts. Waking up every morning to the smell of Grandpa, to Grandpa's wallet, to Grandpa's gun case and Grandpa's guns, to Grandpa's penny jar, to Grandpa's gun lamp where you pull the trigger to turn the light on and off. We were inundated with Grandpa because that is the room that we were given, and that is the room that Billy insisted we stay. I can still smell Grandpa. And we all still ache for Grandpa. Some of us in different ways than others. I ache for Grandpa, and he wasn't my dad, he wasn't my Grandpa. But he was my friend. And he is the first friend that I have ever watched die. And the first friend that I ever buried. And the father of my husband. And the first family death that I had to break to my children. And I am nearly forty years old.

SNAP!

We come home from Grandpa, and immediately try to get right back 'in it'. Billy shows no outward signs of grief. I ask him A LOT about how he is doing. I encourage him in every way that I can. I pray for him. I know he is not finished grieving, but I also know that everybody does it in their own way, on their own time, that there are no RULES for how we grieve. Grief is not an emotion, it is a process. A process that takes time. And the timing is different for everyone. When I finally get up the nerve to talk to Billy about his own personal grieving process, he said he's done grieving. His dad is gone. He's buried. Billy says he cried when his Dad was sick and he cried when he was dying and he cried when he was buried, and there is nothing more to cry about.

SNAP!

But here's the thing. Billy cries - A LOT. But not when he is sad. When he hears a story of God, or sees something on TV that warms his heart, or reads something I have written about the children that moves him in a way he didn't think it would, he cries. And he's not ashamed of it. The tears just roll...in front of me, or the kids, or whoever. He is the most loving man. He loves in ways I will never understand, and I've been his one and only for ten years. He loves his wife and his children like NO OTHER MAN I have ever seen, even in a fairy tale. There is NOTHING that can stop him from taking care of us. He is the head of this family, he is the Lord of his castle, and he has blessedly become our spiritual compass, since he started to take God's hand and walk with Him every day. If anyone ever wanted to see how a man should love his family, let them look no further than our home.

SNAP!

Back to Sue. As we are talking and bawling and messaging and loving, i realize for the first time, that we are all still grieving. More importantly, Billy is still grieving. But the hardest part for anyone to understand is that he lost his Dad, and the one person in the whole world that he could talk to about it, or who would understand, was his best friend. Who he buried ninety days before he buried his own father. He is grieving, and he doesn't even realize that we are ALL grieving. STILL. And that we could be grieving TOGETHER. But we are not.

SNAP!

Ninety days later, Billy runs into the house, carrying the body of a small, lifeless child, screaming and crying, "I've killed her! I killed Reilly! It's all my fault! I am so sorry! I killed her! I killed her! Oh dear God, I've killed her!"

SNAP!

And my head spun off my shoulders. And I cannot erase what are literally SECONDS of time, but feel like years. And I see her. I see my beautiful, amazing, sensitive, life-loving, love-giving, smiling, candle-bright, sassy, cut from my womb as if she were a clone, MIRACLE baby girl. And she is dead.

SNAP!

Time has now stopped. That picture, right there, is in my mind every second of every single day. In those MILLISECONDS, I did not cry, I did not scream, I did not pass out, I did not move. I remember thanking God. And I think I did it out loud in those MILLISECONDS as Billy is running into the house. Again, it is stop/slow/stop/slow motion in my mind. I know what all of us where wearing. I remember that her crazy hair was really crazy that day. And her Old Navy flip flop was lying in the middle of the road.

SNAP!

I thanked God. I thanked him for the amazing gift of love that He had blessed us with these seven years. The lessons of faith and love and trust that he taught us. I thanked him for 'loaning' her to us for awhile. I thanked him, I thanked him, oh God, how I thanked You. For with this miracle baby of mine, You healed me. You healed me of all the hurt. All of it. You took away and erased pain that I never thought would go away, the day You gave me this amazing angel. You taught me that prayer is the only way, and that You are the only answer. You gave me the gift of love. And with that gift, You even gave me instructions. You taught me how to love. But, I didn't need the instructions. Because, how could I not love her? Oh my God, how could I NOT love her? So yes. I thanked Him. What a precious treasure He had loaned to me! She doesn't belong to me! She belongs to HIM! HE trusted US enough to LOAN us our beautiful miracle baby. And now He needed her more than we did. And I was so calm, and so at peace, and just so........blessedly thankful.

SNAP!

Wait.......
She's.......A L I V E??????
Is she.......B R E A T H I N G?????

SNAP!

As I SNAP out of it, chaos ensues.
I call 911.
Billy is panicking, forgetting the basics of CPR.
She is seizing.
But she is........ A L I V E.
Her eyes are rolling in the back of her head.
But she is ........A L I V E.
Her body is covered with road rash.
But she is ........A L I V E.

SNAP!

Hours pass.
No.
Minutes.
We are able to open her airway.
She takes a HEAVING deep breath.
And in complete, unison, screaming and crying at the top of our lungs, my dearest sweetest husband and I hold hands and shout, "PRAISE GOD! PRAISE GOD! SHE'S ALIVE! THANK YOU JESUS!"
And the tears keep coming.
And she opens her eyes.

SNAP!

She cannot speak - sounds come out of her mouth, as if she is speaking in tongues.
But she is ........A L I V E.
Her toe is mangled, her body is bruised, broken.
Her eye is badly bloodied and bruised.

She starts to regain consciousness.
She starts to panic and scream and wail and flail.
I have no idea what happened to her.
But she is.....A L I V E.
The paramedics are there in 3 minutes.

SNAP!

And our baby girl AMAZINGLY survived.
When she most probably, against all odds, should have not.
And four days later, she came HOME.
And we hugged her and kissed her and slobbered on her until she was grossed out.
And then everything got back to normal.

SNAP!

Our daughter didn't die that day. But God used Sue to teach me that I am actually GRIEVING, even though she is still alive. Even though I praise Him every day for allowing us to keep her awhile longer. Even though I hug her tighter and kiss her more and stroke her hair longer and let her sit on my lap even when it hurts me. I am GRIEVING. And as much as my family has been blessed...........

SNAP!

We continue to suffer.
With my health.
With our bank account, even though our love affair with money was healed by God YEARS ago.
With our grief.
With a marriage between two people who are still so in love, ten years later, who have endured more than most couples can wrap their heads around, in just one decade.
A marriage between two people who could not be more opposite, yet which has produced the commonality of our sweet, God-gifted miracle babies.
A marriage which is starting to show cracks in its foundation.
A marriage that absolutely, positively, will NOT, by the grace of God, come to an end, no matter how delightful Satan desires that conclusion.
NO!

SNAP!

One cannot be healed, until one has suffered.
One cannot die, until one has lived.
One cannot receive, until one has given.
This final lesson has been the most difficult for us to master, as sinfully prideful as we tend to be.
Yet it has been this lesson, heeded by our Christian sisters and brothers, that has SAVED us.

SNAP!

A BP gift card, to offset gas expenses for the trip to bury our Grandpa.
A cashier's check for two hundred fifty dollars.
A gift card for Walmart, Walgreens, Target, Publix, Visa.
A personal check in the amount of ONE THOUSAND DOLLARS.
A tithe of two hundred fifty dollars sent to us by a struggling family of six, who heeded God's call to give to their brethren.
A card with a 5 dollar bill with a note that says, "I'm sorry it couldn't have been more".
A prayer shawl, knitted by a stranger, in a state far away.
A twenty dollar bill stuffed into the console of our car while we weren't paying attention.
Another gift of.................

SNAP!

Though are burdens are great, our blessings are many.
Though we would much rather give than to receive, we have now learned to give in ways we never dreamed.
Though are financial struggles are far from over, GOD has fulfilled our needs.
And He has done so through HIS people.
So as God fills our mailbox and our pockets with the hard-earned wages of so very many, so has He filled the hearts of the givers.
As we continue to follow that which we believe to be God's plan, He keeps his promise to care for us and to love us unconditionally.
As we need prayer, it is prayed before we ask.
As we walk, so doth He.

SNAP!

I did not die today.
I did not suffer today.
I received and discerned a message from God from an unexpected friend, on an unexpected day, at a time when I was expecting misery, and pain, and physical anguish.
No.
I did not suffer today.
For God was with me.
As He always is.

SNAP!

I, and those three most precious to me, spent special snuggle time together this evening, after I got home from my 'shots' as the kids call my Remicade infusion.
There were no fights.
There were no arguments.
There was no yelling.
There was no pre-conceived expectation not being filled.
There were no intrusions.
There was no disrespect.
There was love.

SNAP!

Those cracks in the marital foundation?
God is beginning to fill them.
That grief that continues to consume us?
God is beginning to ease our pain.
The financial burden we can't seem to lift?
God is throwing his arms around us as we heave it together.

SNAP!

This post today? The first in many, many months? The words that haven't come?
Inspired by one of the most special people my family has ever been gifted to know.
Her name is Miss Pat.
She has prayed our names a thousand times.
She prayed our two miracle babies into this world.
And she is praying our way out of suffering.
And Miss Pat?
She's just the beginning.

SNAP!

Just like my Sue.
I saw God today.

Did you?

~

WTH?!!!

2010-03-10T16:44:00.000-05:00

Yep.

That's what I just said to God.

Out loud.

After my thirtieth trip to the toilet.

"What the HELL, GOD? WHAT THE HELL?"

Sorry I've been gone for so long.

I've been really, really sick and in UBER-Level 9 Pain.

My last Remicade treatment didn't 'take'. I did not notice any improvement the first week after the infusion. And then the pain in my duodenal area actually got WORSE when it should have been GONE. I made the mistake of calling Dr. TFG, and asking to have another Remicade infusion, STAT, but Dr. TFG said, NO, Not on my watch, it's too early, which is really fucking funny, because HE is the guy who has ordered me into that lab or into the hospital STAT to have Remicade at week 1 or 2 on more than one occasion, and who promptly assumed I had a blockage and ordered some ridiculous x rays that I refuse to have done because I know I don't have a blockage as all of the plumbing is working just fine, a little too well actually.

And the other reason I haven't been blogging is that my body is literally falling apart, one absurd symptom at a time. I'll try really hard not to gross you out, but no promises. So today, after several days of thinking "eh, this is no big deal", the skin on my feet is literally falling OFF. No explanation other than CD. (I'm abbreviating here - Crohn's Disease - I totally hate those two words. UGH) It's not athlete's foot, it's not just dry skin, No, it's CD. This has happened to me before, all around my eyes, the skin just flaked off like dandruff and before I knew it, it was GONE. It's absurd, I know, but CD has been proven to sometimes affect your skin during a flare.

And my hair. Coming out in clumps. Everytime I wash it. Every single time. Starting to get painful, pus-filled sores on my scalp. No, I haven't changed anything. No new products, and I haven't gotten it colored because I'm worried the color will exacerbate the scalp sores. Again, THIS has happened before as well.

And my joints are crazy bad painful. Nothing new there.

And my freaking mouth. Ugh. So I wake up after my two hours of sleep last night and my mouth is fine. And then, over the course of the day, over the course of this 'flare' that I am enduring, my mouth goes haywire; the skin at the corners of my mouth starts peeling; the tissue behind my lips is bright red and raw; at the tip of my tongue, all of my taste buds are either fiery red or white, and enlarged and I can feel the pain from each individual taste bud and this has made my tongue so sore that my mouth is just hopelessly painful; there are sores all the way on the sides and back of my tongue starting near my last molar; the roof of my mouth and the insides of my cheek are red and raw and painful; and I almost threw up from the pain.

Today, I have been in the bathroom (and yes, after the fifth time I started counting) thirty-one times, with no sign of letting up. And no, I have not eaten anything that could be considered a cause. For supper last night we had london broil, green beans, baked waffle fries, and applesauce. Nothing spicy. Nothing too fibrous. Nothing that has ever made me sick before. Was up literally all night, slept from 414 am, to 632 am. Yup. That was it. And I thought I would just go back to sleep after both kids were gone, but noooooooo, Slave Driving BF decided to stay home today and was cracking the whip like mad. So I had to at least 'look' busy. ha! seriously, he is such a meanie. anyway, I worked on our taxes and this humongous pile of mail and moved everything onto my bed - the laptop, the eighty five pounds of paperwork, the tax stuff.... and sure enough I was in the bathroom every 15 minutes. Ugh. After hearing the toilet flush every 15 minutes like clockwork, BF came in and said "Everything okay?" And I said, "No, everything is NOT okay!....yada yada yada" and then after hearing me whine and complain he said, "when are you going to be better?" (HE IS THE ONE PERSON WHO KNOWS AS MUCH ABOUT THIS DISEASE AS I DO, AND WHO IS USUALLY THE ONE WHO IS THE MOST UNDERSTANDING AND LEAST JUDGMENTAL AND WHO I NEED TO BE ON MY SIDE ALWAYS!) and I told him that I was counting on next Wednesday's infusion to work, with all that I had in me, and he said, "Well, what are you going to do if it doesn't work?" and I said "It HAS to work. It just fucking HAS to." And he said, "I think you need a backup game plan." to which I responded, "okay, when they find a cure, I'll be sure you are the first person i call!" and then I promptly marched into my new 'office' for the day and went back to 'work'. UGH!

There's a whole lot more to talk about, but hell, I'm living it and to write about it feels like living it all over again and it just makes me mentally sick and tired when I need to be mentally fresh and strong. And I gotta tell you, if it weren't for the Methadone, I don't know how I would get through this. So I'd like to take a moment and thank God for Dr. Pain. Because she is awesome. She knows her stuff. And she's not afraid to try something new, or tweak something we've already tried, or increase this or decrease that. She listens intently, she ponders carefully, she acts swiftly and appropriately.

So this is where I've been.

In the daily hell on earth that is Crohn's Disease.

What the Hell, God?

WHAT THE HELL??????

HE FUCKING HATES ME

2010-02-23T14:36:00.003-05:00

Sorry if that post was a bit much.

But here I lay, in level NINE pain, YET AGAIN, because my fucking excuse for a gastroenterologist has decided to play the "whose dick is bigger game" with my life, YET AGAIN.

Yeah, I know you need some details, some history, just let me spew for a bit.

Dammit.

THAT FUCKING GUY.

I haven't been posting lately.

And not because I've been well.

Au contraire.

In fact, right now, as I type this, I am SOBBING.

Mad sobbing.

Exasperated sobbing.

Just plain sobbing but really wanting to strangle somebody to death instead sobbing.

Here I am - suffering through intolerable, intractable pain, yet again.

In that same area - the duodenal bulb.

The area the size of my pinky, that showed the beginnings of a narrowing or thickening (otherwise known as a stricture), back in April.

Remember my April failure?

Yeah, we are back there again.

I had a Remicade treatment one week ago TODAY.

HE FUCKING HATES ME

Dammit

2010-01-18T23:58:00.002-05:00

I've got Poop In My Pants.

Not to be confused with Poop In My Pocket.

Seriously.

I just pooped my pants.

First time in a long time.

Then again, I didn't eat anything all day today.

And I had a dinner consisting of rabbit food and some raw fish.

Oh, and a little bit of wine.

And a day filled with crying and grieving.

Good grief.

I guess there's really no reason I should be surprised I pooped my pants.

After all, shit happens.

Literally.

To me.

A lot.

And of course,

I have a treatment tomorrow.

My body knows.

When it's time.

Even before I do.

But it doesn't have to always come back to poop, does it?

I guess it does.

Dammit.

178

2010-01-13T20:45:00.002-05:00

I saw 178.

Oh my God.

And then I ran out of medicine while we were away, snowbound in a blizzard for days and days and days.

And my doctor couldn't refill my script in West Virginia.

So it ran out.

And the weight started to drop.

Now I am 'back' to 164.

And the sores in my mouth are gone.

AND....

The diarrhea has returned with a vengeance.

And my abdominal pain is returning, slowly, steadily....I fear a return of the intractable pain from April.

At what price, victory?

WTF?

What do I do now?

I guess that's what doctors are for.

Cripes.

And Remicade awaits on Tuesday.

Woohoo!

H1N1

2009-12-16T01:31:00.002-05:00

Later today, the children have to get their H1N1 shots.

I say 'have to' because the doctors said it is best for their mother.

I have already had mine.

Billy has had his.

Now the little ones 'have' to have theirs.

I feel badly that the only reason they are getting these shots is because they have a sick mom.

Otherwise, I really don't think we'd get them the vaccine for it.

Not because we are anti-vaccinations, because we are not.

But IF IT WEREN'T FOR CROHNS, no one in this family would have gotten this vaccine, that we all know so little about, but are all lining up to receive.

I was told I didn't have a choice, and that it was in MY best interest that the children and husband got them too.

Huh.

MY BEST INTEREST.

Yeah, that sounds biblical.

That sounds like the behavior of a submissive wife and mother.

Hmmmmm.

I don't like the way that sounds.

And I damn sure don't like the way it makes me feel inside.

And I know it will make me feel even worse during the screaming that will take place in about 12 hours.

I fucking hate what I have to put my family through, day in, day out.

Sometimes it's just a matter of me laying in bed too much and missing out on something.

But this?

My kids have to get stabbed by needles because I have Crohn's Disease.

One of them will exclaim this tomorrow at the top of her lungs.

And she's right.

She's absolutely right.

But what the fuck am I to do about it?

"It's in YOUR best interest that your famiy is vaccinated."

I hate this.

Gilette

2009-12-16T01:18:00.002-05:00

~

We prefer Gilette.

Mach 3 actually.

And why are the blades so damn expensive, can you tell me?

Cuz the reason we prefer Mach 3 is because they are cheaper than Fusion.

Why am I talking about razor blade preferences, you ask?

No, I am not preparing to slice my wrists vertically, or to institute bleeding from any part of my body, thank you.

No.

It's my mouth.

My mouth, my tongue, my gums, the top of my mouth, the outside corners of my mouth, under my tongue, the walls of my mouth.

Did I grind up some razor blades and eat them for supper?

Are you sure?

Well, it feels like I did.

And the occasional rampant bleeding looks like I did.

And did you know your taste buds can just fall right off?

They look like mushrooms.

I wonder how many I started with, versus how many I have left?

They turn white.

They hurt like HELL.

Then they fall right off.

Or they were shaved off when I was chewing the razor blades.

Ouch.

My mouth is in complete agony.

It feels better when I drink warm coffee though.

But I've been drinking so much coffee that gosh, it's 124 am and I am still wide awake.

Anyone who knows me in real life, knows that I have never been a coffee drinker, and also knows that I have never been a night crawler.

Blame my mouth.

And the razor blades.

One doctor and one nurse say it's the crohn's. I think it is. For goodness sake, what the hell else could it be? Besides that, I've been diagnosed with it from Stem to Stern. And the sores look like the same sores I have in my stomach and gut. The only reason I present this argument is because my favorite doctor - Doctor Fucking Hank , the alleged Crohn's GURU, says it's not Crohn's it's some sort of drug interaction. To which the other doctor and HIS nurse say, then why does it feel better when you drink coffee? And why does it NOT FEEL better when you take Atarax?

Right.

Jackass.

UGH!

Gosh I'm sick of diagnosing myself!

So now, I guess we wait until the next treatment on 12/29 and see if my mouth results in any improvement. If it does, I'm right. If it doesn't, UGH.

Please pray that we get relief either before then, or on 12/29. I mean, my mouth Really REALLY REALLY hurts. The sores and ulcers are EVERYWHERE within the mouth.

If you were here, I could show you. But I'm not putting a picture of my sick and ulcerated mouth on the web for all the world to see.

Not today.

Until

2009-12-09T07:39:00.002-05:00

Believe it or not, it has been six months since I had actually been to Dr. Hank's office near my home for a regular, ole' six month follow up appointment.

I tried to postpone it as long as humanly possible.

But, alas.

The greatest nurse in the world calmly, gently, actually I think the word is GLEEFULLY, reminded me that I had to see him every six months in order to keep getting my Remicade like I had been.

Which, translated between she and I, really meant:

"Heather, shut your piehole, go see the asshole, keep your mouth to a minimum, and I will get to stay in charge of your Remicade treatments and everything will still be okay. Don't go in there causing problems or the only person you are going to hurt is YOURSELF! Just do it!"

Believe me, I understood her, IMPLICITLY.

And to be honest, I didn't want to see him anyway.

In years and appointments of the past, I would go in there with notes, and internet clippings, and names of drugs in research, and.......

HOPE.

Now, I just go in there.

Especially since he has acknowledged that I am his albatross.

Remember this?

So I went.

And it was fine.

I guess.

He was mildly perpelexed, hmmm, no that's not the word, I think IMPRESSED is the word, at my new medical team:

Dr. Primary
Dr. Pain
Dr. Blood and Erin the Vampire
Dr. Fairy Tale in my Dreams who may or may not be waiting in the wings for me at one of the most accomplished medical universities in the South

New medical team notwithstanding.....

He knows he is no longer in control of my medical care and decisions.

I am.

He knows that I am a lot smarter and more educated related to my illness than he had previously given me credit for.

He knows that I know. (hold on for this one).

We finished the appt.

He examined me.

He made small talk related to the pain doc, and said he was very happy to hear that the methadone was for my knees, not for my guts.

He said he was glad I stayed with the Neurontin rather than give up on it in the beginning because of the 'drunk like' side effects. I told him that had been ugly, particularly for the hubby, but we were through it and back to 'normal'.

I told him our biggest concerns now were financial, and getting insurance after the COBRA runs out in March, and finding 'work', since our reserves were GONE.

He inquired about Dr. Blood. I told him that Dr. Primary wanted him on board BEFORE I got lymphoma, not AFTER. He neither agreed nor disagreed, he just nodded his head in that oh-so-condescending-way-of-his.

Finally, we are done.

He wishes me a Merry Chirstmas.

I wish him a Happy Hannukah.

And then I say......

"So.....we proceed as we have been.......then?"

He nods.

And then he says, "Unless you want to try something else."

And I know there is nothing else.

But I humor him and say, "What else?"

And he says, "Another drug that would not help you as well as the one you are on."

And I said, "Then we continue with the Remicade, as is, then, yes?"

And he sums it up better than I ever could, better than I thought he could:

"Yes.........

........Until there is something else."

And I repeated him.

"Until there is something else."

Which was the most hopeful thing either of us could muster.

Because no matter what, we both have hope.

He, must have hope, because of his vocation, because of his practice, because of his patients.

Me, I must have hope.

I must have hope.

For me.

For my babies.

For my babies' babies.

For my siblings.

For my siblings' babies.

Yes, I must hold on to that hope.

Because hope is all there is.

Until there is something else.......

~

Not Me! Monday

2009-12-07T13:09:00.002-05:00

~

The scale did NOT say 157.5 pounds today.

I have NOT washed and dried and folded three loads of laundry so far today.

I have NOT completed the addressing of 250 Christmas cards.

I have NOT made my bed, with freshly washed sheets.

I have NOT dry Swiffered where I found it necessary.

I am NOT exhausted.

It is NOT 1:10 pm.

I am NOT exhausted.

It is NOT 1:10 pm.

Why do I keep saying it?

Because it is NOT difficult to read.

I am NOT exhausted.

It is NOT 1:10 pm.

There is NOT more to do.

So very much more to do.

I did NOT promise that the dining room table would be cleared off today.

It will NOT.

I have NOT let myself down once again that the Christmas cards are NOT finished.

I have NOT sent out all of Jake's birthday invitations.

There are NOT four more loads of laundry to wash, dry, and fold.

There are NOT presents in boxes hidden all over this house and two others that I need to open and wrap and then hide again.

There are NOT presents en route that I forgot I even ordered.

There are NOT so very many more things to do.

I do NOT have bell choir concert practice tonight.

My body is NOT still having a Remicade reaction every 2-3 hours.

I am NOT tired.

All that NOT being said.

I am now going to take my high carb, high protein lunch which soothes my wounded mouth.

I am going to take my afternoon medicines.

I am going to put on my fluffy socks.

And I am going to take a nap.

My new normal tells me that I have to accept what DID get accomplished.

Instead of what did NOT.

Yes, I have so much undone.

Yes, I have a full day of errands to run.

But not the next day.

Maybe I will get more finished on Wednesday.

Maybe on Thursday.

Maybe on Friday.

Maybe.

Maybe NOT.

But I have to let go.

Right now.

And take a nap.

Because my body says I have to.

I wish I did NOT.

Reminder

2009-12-07T09:54:00.001-05:00

~
it is hard.

to remember.

that whatever i do today.

is more than i have done in a week.

Again:

Whatever i do today, is more than I've done in a week.

Again:

Whatever i do today, is more than I've done in a week.

Again:

Whatever i do today, is more than I've done in a week.

Dammit

2009-12-05T16:50:00.002-05:00

Had a treatment on Tuesday.

Which means my body should be at it's utmost highest point of immune suppression.

Which means I should be as healthy (or as symptom-free) as possible for the next four weeks.

That's the way it is supposed to work, anyways.

That's the way it USUALLY works.

Cept today.

When I woke up and started pooping my brains out.

Or my guts out.

Eight pounds worth to be exact.

I even pooped in the shower.

Isn't that just the most awesome thing to be able to admit?

That you are almost 40 years old, have a college degree, unbelievable ninja skeelz, and poop on yourself in the shower?

Dammit.

I'm freezing cold.

I'm feverish.

I'm loading up on meds and carbs and bananas.

My mother asks if I've called the doctor.

Why would I do that?

What the HELL is HE going to do?

It is not ALBATROSS fishing season.

I know what to do.

It will get better.

Eventually there will be nothing left to poop.

Eventually it will be another day.

Eventually.

Praising God that today is a horribly yucky day outside and it's okay for all of us to be in our jammies and lay around.

Praising God that so far there has been no blood or vomiting.

Praising God that the children are getting along today (well, sort of).

Praising God that my husband is being amazingly understanding today, knowing that this is such a freaking weird thing to happen just AFTER a treatment, and especially since he spent the entire day with me yesterday, and he is just as perplexed as I am as to why the hell this is happening.

Praising God because it seems like that's what I should be doing than Damning him.

But sometimes I just feel like saying Dammit, at the same time that I'm really Praising HIM.

DAMMIT!

The Fifties

2009-12-04T13:32:00.003-05:00

~

I know!

Can you hardly believe it?

With all the steroids and laying around?

And that I haven't shaved my legs in three or four days (which counts for at least 3!)

What?

What is this crack whore talking about?

Oh, yeah!

Right!

The Fifties!

She's back in the Fifties again!

Like......

158.5 on the scale!

Woohoo!

Woohoo!

Woohoo!

I guess I forgot to mention that I actually tipped 165 pounds (that would be ONE HUNDRED AND SIXTY FIVE POUNDS for you visually impaired individuals) BEFORE the dreaded turkey day.

And yes, I ate my turkey and my mashed potatoes and my sweet potatoes and my awesomely scrumptious Paula-Deen-stolen-but-call-it-my-own-Corn Casserole and my very own Pumpkin Puddin' Pie and my Mama's pumpkin pie which I usually skip but this year it was quite delectable, especially since I ate one whole ENTIRE pie covered in REGULAR Cool Whip.

So yeah, I'm guessing the weight gain really WAS water retention or a drug reaction, and that the prescribed meds to correct such abnormalities really DID their thing.

I'm not going to ask how.

I am not going to ask why.

I am merely going to be thankful that I didn't have to go buy some size 12 Divas, that the size 10s are going to be A-O-Kay!

But no matter what, it's great to be:

BACK IN THE FIFTIES AGAIN!

Hold on, FORTIES, here I come!

~

Marathoners and Hurricanes

2009-12-03T09:13:00.001-05:00

~

I am certain I have introduced you to my most fabulously delicious SIL, Mermaidelicious.

But if you have forgotten, here is her picture:

But this post is not about a picture of Mermaidelicious.

It's a post about love.

By now, all of you out there know that I have Crohn's Disease.

If you didn't know that, well you know it now.

If you don't know what it is, you can Google it.

Or you can just take my word for it.

It sucks.

But let us return to Mermaidelicious.

Do you know how sometimes you'll have someone in your life whom is hurting, or whom is suffering, or whom is just plain miserable, and you care about them so darn much, you just don't know WHAT to do?

Well, we haven't really talked about it, but I think this is how Mermaidelicious was thinking, oh about 18 weeks ago or so.

So with a most personal touch, she figured out a way to not only help me, but perhaps millions of others, as well as providing me with a visual, concrete example of her love for me.

Here it is:

Help for Hurricane Rojo

She's going to run a half-marathon in my honor.

Nope.

She's never run one before.

Never.

Not one.

And I assure you, that no matter how hard I tried, or how badly I wanted to, or how hard the world prayed....I would never be able to run a half marathon for Mermaidelicious or anyone else. But I can most certainly post her journey on my little, ole' blog.

But this isn't necessarily a fund-raising story.

Mermaidelicious and her husband, my brother, Two Fisted Chris, just moved across the country, permanently, oh say, 7 days ago.

This morning, Mermaidelicious will board yet another plane, and on a beautiful morning in Las Vegas, Nevada, surrounded by desert sand and sun, and survivors and strangers and supporters and loved ones, yes, on this date, Mermaidelicious will attempt to complete her very first Half-Marathon in honor of sick, little, old, ME.....Hurricane Rojo.

I'm not even going to try to put what I'm feeling into words.

To do so would be to dishonor her selfless action.

Instead, I will leave you with a montage of Mermaidelicious

Thank you, Mer.

I love you to pieces, and I'll always remember.

Rojo

Post-Treatment Reaction

2009-12-02T10:25:00.000-05:00

~

Anybody want to know how my treatment went?

Well.

Here's my post-treatment prescription regiment until the allergic reaction subsides:

FOURTEEN pills

FOUR times a day

Yeah.

~

Technical Difficulties

2009-12-02T10:03:00.000-05:00

~

Clearly, there was no live feed from Tuesday's always-fun-and-oh-so-entertaining-and-painless Remicade transfusion.

Mighta had something to do with the fact that I didn't take my laptop with me.

Ummmmmm.

Duh.

Well, in another 4 weeks, we get another shot.

But again, there will not be a webcam, for HIPPA reasons, as the infusion lab seats 8 other Crohnie's, just like me, and they might have a problem with being videotaped, and I'm not a lawyer, and, and, and.............so , yeah, no webcam.

But I am going to make a concerted effort to post the transfusion process in words, as difficult as it may be, and when you read it, it will probably be reminiscent of Hunter S. Thompson. Or something.

But all my drugs will be legally administrated.

I think.

Hmmmmmmm..

How would I know, really?

Live Feed Today - by your favorite Crack Whore

2009-12-01T01:09:00.004-05:00

My doctor's infusion lab now has wireless service for all its patients.

For the first time in the history of my battle with Crohn's Disease, I will be doing a live feed throughout my Remicade treatment, starting at 9 am.

Sorry, no webcam.

and please keep in mind, I will be EXTREMELY high throughout the process/odeal.

Tell all your friends!

This could very well lead to a Pulitzer.

Or being Baker Acted.

Satan

2009-11-20T23:08:00.001-05:00

is at work in my life.

He is trying to wreck my body.

He is trying to wreck my family.

He is trying to wreck my marriage.

He is trying to destroy my life.

I have a few words for you, Satan:

BACK THE FUCK OFF, BITCH, CUZ I AIN'T GOING DOWN EASY.

YOU ARE FUCKING WITH THE WRONG BITCH.........AND.........

I am one of God's Christian soldiers these days.

You are outnumbered, guy, big time.

Just go away, and leave me (us) alone.

`

Precipice

2009-11-11T19:43:00.002-05:00

~

Having that on the precipice of a nervous breakdown feeling again.

Nothing is 'wrong'.

We are in no worse a situation than we were yesterday. In fact, things are looking 'up' for hubby's new venture.

So I have no concrete reasoning as to 'why' I feel this way.

But my guts are in my throat.

I just want to be left alone.

And if I hear "MOMMY!" one more time, I might just lose it.

I keep having very quick flashbacks to the ugliness of 30 years ago.

As well as the ugliness of the evilness of a couple of years ago.

And then the flashbacks start all over again, like a constant, unending roll of film.

No.

Drugs are not the issue.

I don't take those kind anymore.

Haven't in many months.

I don't know who these demons are who are taunting me.

I don't know what they want.

I wish they would just tell me.

Then perhaps I could give them what they want, so they will leave me alone, before I fall off the precipice.

153

2009-11-10T20:16:00.002-05:00

~

Thank you, prednisone and solumedrol, thank you.

153.

POUNDS.

153.

Thank you.

Good news - no one seems to have noticed.

Good news - the low rise jeans still fit.

Good news - the long hair is hiding the moon face a bit.

Good news - Clinique's 7 day scrub lotion is keeping the acne at bay.

Good news - feeling pretty good.

So I guess it's no big deal that I cracked 150 since I was pregnant?

Of course it's not.

All that matters is how I feel.

And I feel pretty good.

And I will stop stepping on the scale, and then I will feel even better!

~

ATARAX ....IS the answer!

2009-11-05T09:01:00.002-05:00

A-ha!

Atarax IS the answer to my post-infusion reactions.

Yesterday, I had the itching, and the redness and the hives.

Today, I do not.

Today, it is a struggle to move my legs, but I have no itching, redness, or hives.

And today, I am well enough to lie on the couch and take care of phone calls and paperwork.

Atarax IS the answer.

And can someone please tell ----ME------ WHY------ I------------ am the one diagnosing my own medication as well as diagnosing myself, period????

UGH.

I guess I should just be thankful that it was better this time, and that there is hope for next time.

And that is what I will do, today.

Amen.

Dr. No......becomes Dr. Yes...????????

2009-11-04T21:24:00.003-05:00

Monthly Rat Venom Day yesterday, once again.

My four week routine.

If I could name my nurse out loud, believe me I would, from the very top of my lungs, because she is phenomenal.

Perhaps the best nurse I have ever had.

And believe me, I've seen many a nurse in my day.

I digress.

It wasn't such a bad day.

We started 40 mg of Prednisone two days before the infusion.

Since I have been on so many steroids the past two months, both oral and nasal, I have ballooned up to 150 lbs.

And I don't eat anything besides yogurt and dinner.

Oh, and about 4 candy bars a day.

But the diet isn't the reason.

It's the stinkin' roids.

But they are working to make it less of an ordeal for me, so I have stopped fighting them, and counting down the days until my 50th birthday, when I am willing to accept knee replacements.

Not one moment earlier.

Everything in the whole 'new' (since August) regiment seems to be working brilliantly.

In a nutshell:

Methadone, 3x a day, every day, - has eliminated the knee pain. And I have not morphed into Anna Nicole Smith in any way. Dammit.

Neurontin, 2pills, 2x a day, every day - whew. This one was rough. I had to ramp up to a total of 1800mg a day, but Dr. Pain promised me that once I got into my blood levels, the side effects would wear off. And she warned me they were bad. What she did NOT warn me about was that they would be bad for those AROUND me, not necessarily for me. Neurontin is an anti-convulsive nerve drug that is used for epileptics, as well as a whole host of other illnesses, but because abdominal pain is very difficult to treat, she thought this would be a good one to try. It is very inexpensive. She warned me that I would be very sleepy as I ramped up, and that I would sometimes be confused, but if I could just get through those side effects, it could be an excellent solution for me. So when I came home and told Billy about it, he either wasn't listening (I vote for this one), didn't care, or didn't understand the volume of what I was talking about. Halfway through my ramping up to my goal dosage, he starts yelling and screaming at me about how I was acting like a drunk, how my speech was slurring, how I was talking to people who weren't even there, that i was sleeping way too much. And I said, but you knew this when I started the drug! And he said, he guessed he didn't know how bad it was going to be. I told him we were almost to the end of the ramp, could he just hang on long enough to see if the doctor was right? And he reluctantly agreed. As he was driving me to my Remicade infusion yesterday, I asked him, "I have finally reached the optimum dosage and the drug should be stable within my blood level. Have the side effects gone away in your opinion?" He merely nodded his head, yes, which really meant, 'I'm sorry I went off on you when it wasn't your fault, and yes your doctor was right, and I'm sorry I didn't tell you that a week ago.' But that's okay. As long as we're on the same page, he doesn't have to say any more than that.

I also asked him if he thought the 4 week infusion period was working. He said, Yeah, don't you? And I said that I did, but wanted to make sure he did as well.

I knew it was working when I started to have severe breakthrough duodenal and joint pain about two days prior to the infusion. Which means, in laymen's speak, "Heather, um, it's time for Remicade." Hello,

Oh yeah, and my poop looks like real poop! All the time! I don't even know what that means, except for, no one in the family will be able to recognize it if I don't flush!

This nutshell is growing. No need for me to include all my meds, because we might as well type out the Walgreens formulary. No thank you!

back to the Incredible.....Dr. NO!, Other wise known as Dr. Hank.

So I sit in my special Remicade recliner, with the greatest nurse in the world, at 9 am. Most people would have been finished at 11 am. I left at 230. This is an improvement, people! A huge improvement.

She pre-medded me with Benadryl. Then she asked me to use my albuterol inhaler BEFORE she started the Solumedrol. (This woman is bound and determined to make these reactions as minimally horrifying as possible. She cannot make them go away, but dammit she is trying her best to make them better for me, and that is the reason I want to scream her name from the top of the highest mountain!) She starts the fluids, starts the Solumedrol, then starts the Remicade, at about 5ML, then very slowly increases them as time goes on, as I can tolerate.

And here we go.

One hour and 10 minutes in.

Same as always.

I'm starting to feel it.

EXCEPT - it is not as bad as it has been.

She was with another patient, and I had to pee, so I told her, it was starting, but that I was okay, and that I was going to the bathroom, and she said she'd be ready as soon as I got back, was I sure I wanted to wait. And I said I thought I was okay. And she said Okay.

So I went to the bathroom (10 feet across the hall), peed, started to wash my hands, and a very purple faced Heather was staring back at me. So I knew it was time to get my purple face back into that infusion room, and QUICK.

I get in my chair, she has finished with the other patient, and is loading me up with more benadryl. She tells me to use my daily inhaler, Xopanex. I do. Still not feeling so great, still hot to the touch, still purple, still itchy, but the electrical current isn't nearly as bad as it has been in the past, and I am not screaming at the top of my lungs that I am going to die, I hate this I hate this I hate this. So she gives me some more solumedrol.

Oh, she had stopped the Remicade BEFORE I went to pee, I forgot to mention that part.

I remember that I still wasn't feeling very good at all, but I didn't feel like I was 'dying', as I really have felt in the past.

At this point, nothing is going into me but straight fluids.

I knew I couldn't just stay there all day, so I told her to turn it back on.

She did, but she told me to take a valium and a methadone (all within my normal dosage instructions), and two more hits off of my albuterol inhaler. I did what I was told.

And that was it.

No more reaction.

Finished at 230. Not so bad.

But during my time there, I had some questions for Dr. Hank.

I'm sure you've gotten this message before, but my love affair with Dr. Hank has diminished to some other kind of affair, that I can't even describe. I feel like I don't even need him as long as I have her. And that any time I am REQUIRED to see him, he orders some stupid damn test I know now that I don't need, or just ends up making me mad as hell because I still can't get over the 'albatross' factor.

So I had a few questions. One of the questions, I have asked EVERY SINGLE TIME I have had an infusion, and have gotten the same answer, but this time I did my damn homework and reworded it.

The question was related to the post-infusion reaction that I have been having when I am at home, which scares me more when I don't have my nurse, or I am all by myself, or what in the heck do I do now?

The question was, "When I have the post-infusion reaction at home, the rash, the hives, the itching, isn't there SOMETHING ELSE, SOMETHING besides Benadryl that he can give me. I mean, there has to be, because this one time, at Band Camp, my daughter had an unexplainable hive breakout from head to toe, and Benadryl didn't work, and a shot of epi didn't work, and a steroid didn't work, and her AWESOME pediatrician recommended this antihistamine ATARAX that she said was much more powerful than Benadryl. Can I try that? Has he heard of it? Does he think it will work?

The answer was: Sure, she can have Atarax. I'll write a script for 120 pills, with 3 refills, and tell her it is much stronger than Benadryl.

Oh, Dr. Hank thank you so much! Awesome! Let's try something new.

BUT WHY THE FUCK HAS IT TAKEN YOU NINE FUCKING YEARS TO ANSWER 'YES' TO THIS SAME MOTHER FUCKING QUESTION I HAVE BEEN ASKING YOU? WHY, WHY, WHY?

Because I decided to re-word the question?

Because maybe you got laid last night?

Sorry. Maybe that was inappropriate. But guess what happened?

My post-infusion reaction, due to the addition of Atarax to my drug cocktail diet, made ALL the difference today. It was much better than it had been in the past. And yes, I was 'out of it' all damn day. And no, I did not get a single thing done. But the only place on my body that had a reaction was my arms, wrists, and hands. Which were very red, itchy, and covered and in hives. But I put some heat packs on under some gloves, as this seemed to stop the hives which were worst on my wrists. And I slept all day. But that is OKAY.

We have potentially solved ANOTHER problem. When I say We, I say ME. Ugh.

The second question was, my insurance company has become a pain in the ass related to paying for Nexium. Even though the docs write it one way, the insurance company won't give me all that is written for, and charges me three times a month. I don't knoww what the deal is, but the question was: Prevacid gets released as an OTC drug on 11/10. May I please cancel the Nexium and take Prevacid instead?

And the answer was: Sure.

My third question will be asked and answered when I go to see him in 6 weeks. And that question is "What do you think about sending me to Gainesville to see Dr. Know It All about Crohns, just for a look-see?"

We will see if Dr. No has indeed turned into Dr. Yes.

Anybody know of a great Hanukah gift for a diabetic Orthodox Jew GI?

Anyone?

Yes, this is what I have resulted to: bribery.

Whatever it takes, amigos.

Whatever it takes.

Doctor Whackjob and the Aliens

2009-10-20T19:21:00.003-04:00

~

So today, I went to a dermatologist.

For no reason other than, well, I've met my deductible for the year (imagine THAT), and I may or may not have a few suspicious looking spots, seeing as how I have skin the color of a storm trooper, covered in freckles from head to toe.

So off I go.

To meet Dr. Whackjob and the Aliens.

If you've ever been to a dermatologist (I hadn't, and it would have been nice to have known this), you take off all your clothes, and put on a gown.

Very reminiscent of going to the OB/GYN, but whatever.

So Dr. Whackjob comes in.

Followed by his five aliens.

I call him Dr. Whackjob for the following reasons:

1). He spent wayyyyyy too much time admiring and commenting on my gorgeously fabulous red hair. Yeah, it's gorgeously, fabulous, but dude, COME on, ENOUGH ALREADY!

2). He had on a tie that looked like somebody's tee shirt from a Grateful Dead concert. Not very doctor-ish.

3). He started asking about my Crohn's and suggested the following: that the doctors give me pregnancy hormones to make my body think that it's pregnant. (Sometimes, if you have Crohn's and you get pregnant, your body goes into remission during the pregnancy, then usually comes back after you give birth. In my case, this happened both times, at almost exactly the same times).

Okay, so here I am naked, and the last thing I wanted to do was insult this doctor who I heard was the best dermatologist in my area, in case I had a melanoma on my leg the size of Texas, and was really going to need to be nice to him for a long time.

So I just shook my head and said, "Sure". But he wouldn't stop, he wanted me to write down on a piece of paper the name of this hormone (which now resides in the Lake County landfill), and suggest to my GI that he give it to me, to try to convince my body that it's pregnant, and maybe it would stop my Crohn's symptoms.

And he concluded with, "It's just an idea."

Whoa.

ARE YOU FUCKING KIDDING ME?

It's just an idea?

I have a clinically diagnosed complication of a disease that I share with 249 other human beings on the planet, and you want me to propose "just an idea" to these doctors who are so completely educated on this ONE disease that they might just have me Baker Acted (Google it) to the nearest mental institution on the suggestion that they PRETEND to impregnate me so that my Crohn's might subside in NINE MONTH INTERVALS?

Because a dermatologist with a Grateful Dead tie said "It's just an idea."?????????????

Yeah.

Right.

Uh-huh.

I'll get right on that.

Anyway, back to the aliens.

So you lay on this table, nekkid except for the 'gown', and Doctor Whackjob is wearing these like 3D glasses that light up and he is scanning my body from head to toe, and every now and then he shouts out to Alien #5 a word that sounds like "Milla", or "Keysucker" or "Kleptomaniac" and she types all this into the Alien computer, and then Aliens #1, 2, 3, and 4, follow Dr. Whackjob's lead, picking up one of my limbs, and shouting out the same words and the location in which those words were found, like, "Kleptomaniac, lower right eye".

Honest to God, I felt like I had been kidnapped by Aliens, and they were examining a human for maybe the 10th time, and were logging what they had found.

It was freaking WEIRD, and that's all I have to say about that.

Oh yeah.

The news?

Allegedly, I am a dermatologist's worst nightmare.

Apparently, I have beautiful skin, albeit quite freckled, but no signs of anything amiss whatsoever, even that kleptomaniac eye of mine.

And he never has to see me again, unless I or one of my 'normal' physicians detects something has appeared from out of the blue or has changed.

Praise God that I have no signs of skin cancer.

And most importantly, Praise God that I don't have to see Dr. Whackjob and the Aliens again.

Hopefully, never, ever again.

Whew.

~

Status Quo

2009-10-15T08:17:00.002-04:00

~
Recent 'progress'? in a nutshell:

Had my regularly scheduled Remicade on 10/6.

Had my regularly scheduled allergic reaction to said Remicade exactly 1 hour and 10 minutes later.

Had my oh-so-wonderful-gift-from-God-Nurse by my side the whole time.

The reaction was a 2 out of 10.

I think this had a lot to do with the fact that I had been on steroids for a whole month prior, due to our attempt to obliterate my sinusitis, ear infection, bronchitis, and asthma that kicked up out of nowhere.

I was on two oral antibiotics, one antibiotic injection, and three rounds of prednisone.

I had exactly 3 weeks to get better before my next Remicade, and guess what?

We did it.

The 'team'.

We got me better enough to have the Remicade.

After the Remicade, I continued to 'react' for 72 more hours.

This is becoming my new normal.

So now, when I have a Remicade infusion, I can't just block out one day that week.

I have to block out three.

Or four.

Or however long it takes for my body to stop attempting to reject the medicine that actually makes me pretty 'normal' the rest of the times.

Oh yeah, and we added a hematologist to my repertoire.

You know, just because I didn't have one.

Ha!

Considering that I have to have my blood drawn every quarter to test my liver function due to the Remicade, Dr. Primary (the sage Dr. Primary that he is), thought it might be a good idea to have a blood guy on board.

Fine by me!

So I go to see blood guy.

I like blood guy!

I can get blood drawn in blood guy's office, and get the results IMMEDIATELY!

Why haven't we thought of this BEFORE?????

Right.

So, after meeting Blood Guy, Blood Guy tells me he is SHOCKED at the state of my liver.

In a good way.

Says he can't believe I've been on Remicade for as long as I have, at the dosages that I have, and taken all the other drugs that I have, and have such a perfectly clean as a baby's liver.

OH PRAISE GOD!!!!!!!

Wonderful news!

YES!

I can actually go to a doctor, and there NOT BE A PROBLEM!

WOOHOO!

And.....

Blood Guy says he doesn't think I need B12, or Iron, or Calcium at this time.

He wants to 'wait and see'.

I am totally cool with that.

Loving Blood Guy.

Loving my TEAM!

My bowels are doing pretty good. (Thank you, Remicade).

My pain is being managed well. (Thank you, Dr. Pain).

My primary doctor is seeing me monthly and I have developed quite a nice relationship with him as well as his staff (Thank you, Dr. Primary).

I cannot complain right now.

Not this month.

There is a lot of emotional stress going on in my family and extended family right now, and Team Fallon definitely needs your prayers, but I have not seen this affect my Crohn's in any way, not so far anyhow.

(No, Billy Two Swords and I are not having problems -- everyone always assumes THAT!).

I will post more details about the prayer needs of my family later, when we get some more information, but suffice it to say, my dear, sweet, husband is going through the most difficult year of his life. And HE needs your prayers.

But thankfully, (that GOD guy again!) my health is stable enough at the moment that I am able to provide him with whatever he needs, whenever he needs it.

And to that, all I can say is:

AMEN.

Next Remicade treatment - 11/3.

Until then.........to God be the Glory!

No Pee For You!

2009-09-21T22:36:00.002-04:00

I made the cut.

Dr. Pain trusts me.

I don't have to take drug tests when I go to get my meth anymore.

That would have been good information to have BEFORE I drank eleventy bottles of water in 6 minutes so I'd have enough pee.

But I won't complain.

We are working very well TOGETHER, Dr. Pain and I.

I talked to her about the breakthrough pain, and she increased the amount of methadone pills in my prescription, and told me just to add a dose here and there if and when I need it (again, don't worry, I am on a 2.5 mg dose - VERY SMALL), and if that didn't work, she would consider adding an additional nerve pill that alleviates my duodenal stomach pain next time.

All in all, easy peasey visit, didn't have to pee, nice to have a doc who doesn't think I'm a crackhead, and I'm all methed up and ready to go for another month.

Meth Lover

2009-09-20T21:07:00.002-04:00

Okay, that's probably a bit extreme.

But after following Dr. Pain's explicit instructions to take the methadone every eight hours, whether I have pain or not, guess what?

No pain!

Or at the very minimum, very manageable and tolerable pain.

Never in a million years would I have guessed I would become a 'legalized' meth user, but I'll be damned, it's working.

I've had a couple of days of really bad duodenal pain that was not controlled by the meth, but I meet with Dr. Pain tomorrow, and will ask her what my options are for breakthrough pain.

Oh, and as an aside, I wore my brand new nineteen dollar low cut Old Navy Diva jeans to church today in my new 139 lb. size 10 smoking hot bod.

Just thought I'd throw that out there, cuz it's my blog, and well, I can!

Onward we trudge!

Watermelon Head

2009-09-10T09:37:00.002-04:00

I'm alive today, thought you might want to know.

So today I am working on the computer, getting sleepy, will probably nap and read some.

I always keep my day after Remicade 'empty', so that I don't have to worry about anything.

Billy took care of the kids this morning, he's got the boat guy coming this morning to see what's wrong with it, and then he will take Jake to wress-a-ling practice tonight, so Reilly and I can just lay in my bed and watch tv together.

My voice is shot - side effects of all the benadryl and solumedrol (steroids), I am red and hot to the touch, but I do not have a fever.

Yesterday, Sue, my nurse, told me to take two benadryl before I went to bed last night, which I did, and to continue taking it today, round the clock until the reaction subsides.

I have started that already.

The reactions are most definitely better than they have been, and we've been tweaking it every time.

This time, I was in the bathroom across the hall, trying to pee, when the reaction started, and they didn't have a call button, so I stopped peeing, didn't even wash my hands, looked in the mirror and looked like I had a watermelon sized face the color of a tomato, and ran back to the lab while attached to my IV pole.

She was ready, stopped the Remicade, and administered all the meds, and waited about 45 minutes before starting again.

Is it weird that it feels better when she holds my hand throughout this whole process of hell?

Throughout the rest of the day, I would get fidgety or itchy, and she would add smaller doses of meds as she felt accordingly.

We'll get there.

No Poop For YOU!

2009-09-01T08:55:00.003-04:00

~

Say it just like the Soup Nazi from Seinfeld:

No POOP for YOU!

I haven't pooped in eight days.

Yes, you are reading the right blog.

Little Miss Diarrhea has not pooped in eight days.

I am loving this!

No, I am not going to call my doctor.

No, I am not in any pain.

No, I do not have a fever.

No, I do not think there is anything 'wrong'.

My bowels used to be like this 'before' I had Crohn's.

So this is an awesome sign.

Our current protocol continues to work.

I am loving 'NOT' pooping.

No Poop for ME!

~

Lobster

2009-08-11T10:12:00.002-04:00

Yesterday was Remicade day.

It went pretty smooth.

Had the reaction, Miracle Worker nurse was right there with the back-up meds, and I finished in record time - 4 1/2 hours!

And then I woke up this morning.

LITERALLY every part of my body is bright red, the color of a steamed lobster.

I have red sheer curtains in my dining room, and if I stood behind them, you wouldn't be able to see me.

That is how red I am. (okay, no redhead jokes now, that's not what I'm talking about!)

And, not only am I red, but I am scorching hot to the touch, but I have no fever.

Once again, I have hives on the palms of my hands, and the pseudo-electric current is slowly coursing through my body, but not like it does during the infusions.

When I woke up this morning, I could not move my arms or my legs.

But I took my time, and finally was able to shake them alive again.

I went ahead and medicated myself, called Miracle Worker Nurse so she could document the continued reaction for the file, and wholeheartedly agreed that I took the right meds, at the right dose, and to continue with them every four hours until the reaction goes away.

Suffice it to say, I will be dozing off very shortly.

And you thought this post was going to be about a scrumptious steamed lobster slathered in hot melted butter with a fresh baked loaf of French bread on the side?

Yeah, I wish it had been.

Sigh.

Really

2009-08-08T19:32:00.002-04:00

~
Oh my knees are really hurting.

REALLY hurting.

Sigh.

As I was driving home from a friend's house with Jake this afternoon, I was listening to my contemporary christian radio station, and I heard "Bring the Rain" by MercyMe.

For those of you who don't know it, don't worry about it.

But it made me realize, that my entire life has been a battle.

Actually a series of battles.

I think I have one beaten, and then there is another one for me to fight.

A child of divorce.

A child of an alcoholic father I never knew, who died before I could connect.

A child of sexual abuse.

A child of rape.

And then an adult with an alcoholic husband.

And then an adult of divorce.

And then Crohn's Disease.

I have won every battle.

I am still fighting the last one.

But amazingly, I am still, and always be, a child of God.

He has brought the joy

and He has brought the glory,

and Lord Jesus

He is bringing the rain.

Eh

2009-08-06T20:02:00.002-04:00

I got nothing better to say.

Then why the heck would I post?

I dunno.

It's my damn blog.

Just felt like it.

My knees and hips are throbbing.

Two Vicodin, Two Valium, Four Ibuprofen, a boiling hot jacuzzi bath, and a vibrating bed later, and they are still throbbing.

Because I have to take the steroids to get ready for Remicade on Monday.

YAY!

Woohoo!!!

Can't freaking wait!

Oh boy!

Okay, I will go away and shut my piehole now that I'm done complaining.

A whole bunch of a lot of damn good it does.

Which is why I try not to do it.

But it's just been a couple of those kinda days.

I'm done now.

Goodbye.

Guilt?

2009-08-05T11:26:00.003-04:00

So we have returned from our vacation of a lifetime.

It is 1127 am EASTERN time.

I woke up at 10 am EASTERN time.

Highly unusual, for those of you who know me In Real Life.

But then again, that would be 7 am PACIFIC time.

Anyway.

I can't get out of bed.

I hurt all over.

My knees are throbbing.

My guts are raging.

I am two weeks behind on Remicade (remember? TFG????)

And I am starting to feel it.

Remarkably, I had two bad days on the 35 day trip.

Personally, I consider that to be miraculous.

I used to be better at math, but 2/35 seems like a very small percentage to me, even though I can't do it in my head anymore.

So why is this post entitled guilt?

Well, for those of you who know me In Real Life, you know what a go-getter I am, how I never stop, how I suppress the unsuppressable, how I never quit, never say die, and just plain suck it up.

Right now, I am staring at dust.

and dog hair.

and filth.

and bags upon bags upon bags that need unpacking.

and a 4 foot high stack of mail.

and an empty refrigerator.

and two monsters who are bouncing off the walls because they can't discern the difference between exhaustion and insanity.

and a husband who is already up, doing errands, mowing the grass, making a million phone calls, laying out chicken to thaw for dinner and asking me, 'when are you going to publix because there is NOTHING to eat'.

and a list of school supplies that need to be purchased.

and thank you notes that must be written.

and thank you gifts that must be bought with money that doesn't exist.

and 3,000 pictures that need to be edited and cropped for the scrapbook of a lifetime that will commence being created on the first day of school (I'm not THAT crazy that I would start THAT project TODAY).

and 12 more blog posts to be written to get everyone caught up on our trip before every miniscule detail escapes my memory.

and business battles that need to be fought with lots and lots of energy and fortitude.

and enemies that must be faced and beaten.

and I continue to lie here.

and I think I am going to continue to lie here, today, for as long as I possibly can.

So back to my original question.

Should I feel guilty?

For lying here for one day?

For going to Publix in five or six hours, instead of right this minute?

For letting the monsters watch whatever they want to watch on television today, since they haven't watched tv in 35 days?

For letting the house 'go' for one more day?

When healthy people go on vacation, do they take 'one' day to recover?

Or do they wake up in the morning and jump right on it?

I know the answer.

I used to jump right on it.

I used to be healthy.

THAT's Never Happened Before

2009-07-20T14:15:00.001-04:00

Today I pooped my pants in Las Vegas.

And no, it wasn't at the CRAPS table.

Not So Bad

2009-06-29T19:45:00.002-04:00

I had a Remicade infusion today.

It wasn't so bad.

On the scale of Remicade hell, it was about a 3. A 1 would be NO allergic reaction at all. My last treatment was the worst one I have ever had in 9 years, so that one was a 10.

One hour in to the infusion (like F'in clockwork), the reaction started.

They knew what to do, and five minutes of Remicade hell later, I was sound asleep from all the drugs, and woke up six hours later, when the infusion was just about finished.

I am tired, and my knees are in tremendous pain (from all the 'roids), but as we all know, I have meds for that, so I hope to rest and sleep soundly tonight as we all have a big day tomorrow, wrapping up loose ends for our big trip. (Details forthcoming).

Another Crohnie found my POOP blog today, and we have 'met', and I have guided her to this site.

God is good.
All the time.
All the time.
God is good.

He really, really, really IS.

Of Mice and Men

2009-06-25T21:49:00.002-04:00

"The best laid plans of mice and men, often go awry...."

This is usually the case in my life.

But I must say, lately, our best laid plans seem to be going as they should, as planned.

Today, I met with Dr. Primary. He was the first doctor who gave us a slice of hope after my nine year GI, Dr. Hank, abandoned me. Today was my first follow-up appointment since then.

He was thrilled with my progress.

He was very happy that I was helped by a doctor he referred me to, and that I was progressing and continuing to progress.

I told him that I had met with Dr. Pain who he had referred me to, and that even though we were still in the experimental stage of what pain meds were going to work for what areas, I felt very comfortable with the addition of this specialist to my repertoire

He concurred with her modus operandi.

He was not at all surprised to hear that I was planning on separating from Dr. Hank, and in fact said to me, "I had a feeling you were heading in that direction, the last time I saw you." Actually, he seemed pleased to hear that I was going down this road. Doctors typically never say bad things about each other, but I could tell he was having as much difficulty dealing with the Jackass as I had been.

I told him I had already met with the new GI, and that I can't sever my relationship with Dr. Hank until we can solve the 'where in the hell can we get this girl her Remicade at a place that will work with her allergy to the drug so she doesn't die while she's infused with a drug that will potentially save her life' problem.

Dr. Primary said he had a very good relationship with the new GI, and that he was certain that we could figure something out, asking me how much time he had to solve this problem, between my next scheduled treatments and my next appt with Dr. Hank.

I told him he had 10 weeks.

Dr. Primary also said, there was no way that I should go to Shands (in Gainesville) every four weeks for Remicade, that was ridiculous.

I was very happy to hear him say that.

But he did agree that I should go to Shands for consultation and research opportunities.

He promised me that this was a small hurdle, that we can all work together to figure this out.

He also wrote me prescriptions that Dr. Hank used to write for me, but said "get those from your primary now." TFG!

I thanked him profusely, and said I was so very relieved to know that I now had a TEAM of physicians. He smiled and said, "you're welcome."

Not once did he refer to me as an albatross. I'm not a mind reader, but I don't think he was thinking of the word albatross during the entire length of the appointment.

Nor did he allude to the absurd notion that I was crazy, aka "situationally depressed".

Whew.

It is such a pleasure to see a physician who cares and wants to treat me and wants to heal me and wants to "first do no harm". A physician who is not going to 'split hairs with me' over whether I am suicidally insane, or just wanting to end my pain by inevitably ending my life. This guy doesn't want me to die. He doesn't want me to feel like I'm going to die. He wants me to live and thrive. He gives a damn. All of the new docs give a damn.

Now I just have to divorce the one who doesn't.

"The best laid plans.........."

TFG

2009-06-23T14:57:00.002-04:00

WARNING

In case any of you missed the previous warning when you tried to enter this blog, I am warning you again.

This one is REALLY R-rated, because I am REALLY mad.

So you have been DOUBLY warned.

Sorry Pastors, Christian friends, aunts, uncles, whomever doesn't like the way I speak my mind, but this is how I am feeling right now.

So yesterday I finally went to see the Pain Management Specialist. She was kind, understanding, supportive, and ready to attack the situation. I was told to stop taking the Vicodin. I'm cool with that. It doesn't work anymore anyway, after nine years, it's time.

She has prescribed methadone.

I started to hyperventilate.

And visions of Heath Ledger and Anna Nicole Smith came to mind.

Dr. Pain said, "Mrs. Fallon, if you take the medicine AS PRESCRIBED, and you are a responsible adult who doesn't also chase her meds with VODKA and add a dessert of HEROIN, you will be FINE."

Whew.

So I took my first dose of methadone last night. (It is a VERY low dosage, by the way.) Didn't see Lucy in the Sky With Diamonds, wasn't drooling, and woke up this morning. So, so far, so good. I still have pain, but I'm supposed to be taking it three times a day, but that really isn't feasible with my lifestyle at this juncture (you know, when I have children to feed, and I have to drive them places), so we'll have to work this dosage schedule out, but at least she treated me like a person, which I appreciate immensely.

In addition to the methadone, she is going to add a nerve medicine (I don't know the name of it) at a later date, as well as pain patches for my knees. I left her office feeling hopeful and grateful and relieved.

And then there was today.

Today, I had what I thought was going to be my final appointment with Dr. Hank.

TFG.

Which also stands for "That Fucking Guy".

Yeah, I'm mad.

I went there with every intention of telling him that I was going to switch doctors, thank you for all that you have done, I'm going to Shands, but I still want to have my Remicade infusions at your lab, can I have your blessing, blah blah blah.

For the record, I do pretty well in situations of conflict. Unusually well. Some call me a conflict seeker. I don't think I "seek" it, I just don't avoid it. I face it head on, and usually I call myself a winner at the end of the day.

TFG

To summarize, because I am so angry, and my head is absolutely pounding at the memory of this appointment, and what I consider to be an absolute WASTE of thirty dollars that to be honest with you, I don't have to waste........

We reviewed the past four weeks and my 'status'. I told him about the changes in meds prescribed by Dr. Primary and Dr. Pain. He concurred. (Then why the FUCK didn't you prescribe them in the first place, JACKASS?)

We talked about "how are you doing (AND I QUOTE) upstairs"?

I looked him square in the eye, and said, "I don't think I ever had a problem UPSTAIRS."

He said, "I think you had and continue to have, situational depression related to an illness you cannot control."

I looked him square in the eye and said, "Dr. Hank, I almost killed myself, that's how bad the pain was."

He said, "Doesn't surprise me at all. That's a symptom of depression."

I said, "You call it depression, I call it AGONY."

He said, "I am not going to split hairs here. The important thing is that you are better."

NO! THE IMPORTANT THING IS THAT I HAVE DECIDED THAT YOU SUCK, BUT I CAN'T FUCKING FIRE YOU BECAUSE YOU ARE THE ONLY PERSON IN THREE COUNTIES WHO CAN INFUSE MY REMICADE, DAMMIT!

We get back to talking about the Remicade. He says, "So you're scheduled for Remicade next Monday, and then four weeks later."

I look at him in horror, and say, "I've just planned a six week vacation, because YOU told me we were on a 2-4-6-8-8-8-8-8-8-8 week schedule!"

He said, "No. Clearly, you misunderstood me."

TFG! I am not depressed, I am not suicidal, and I am DAMN sure not DEAF!

He continued with, "NORMALLY, that would be the case."

Readers, That has ALWAYS been my Remicade schedule. For NINE F'in years.

He went on, "But since it is YOU (meaning, ALBATROSS), you will be on a four week schedule. Period."

TFG

I told him that was going to work, that we planned our SIX week vacation to the DAY around my Remicade treatments.

And he sighed, and said, "Well i guess this time, it will be six weeks, but next time, it will be four."

TFG

And he had the decency to ask where we were going that would take six weeks.

And I told him.

And he told me I was nuts.

TFG

And I said, "You know what, I got out of the hospital, I suffered for another two weeks, I finally got better, and I said to myself, I have no idea how many tomorrows I have left, and I looked at those three most precious to me, and I said, we're doing it. We're going to the Grand Canyon.
I don't care about the money, I don't care that it sounds crazy, I don't care that we don't have jobs, I feel like this is what we as a family absolutely positively need to do."

And he said, "I'm proud of you."

What?

TFG

And then he spent fifteen minutes telling me all about the wonders of the Grand Canyon.

TFG

So I came home and Billy said, "how'd it go?"

I said, "I didn't fire him."

Billy laughed and said, "Chicken shit!"

And I said, "What the hell am I supposed to do? I can't get the Remicade in Clermont! What the hell am I supposed to do?"

Billy said, "Did you tell him you had seen the other doctor?'

"Nope"

"Did you tell him you want to go to Shands?"

"Nope"

"Why?

"Billy, have you met THAT FUCKING GUY? He is IMPOSSIBLE to talk to!"

"i know, but what are you going to do?"

"I have 10 weeks before I have to face him again."

The splendor of the Grand Canyon awaits, and dammit, TFG is going to be the last thing on my mind, I promise you.

Ugh.

TFG.

Eleven Hundred (1,100)

2009-06-19T22:18:00.002-04:00

That is how much ceramic tile I mopped today, on my hands and knees.

Hmmmmmmmm

Someone is doing pretty well, considering.

And yes, I'm insane.

Cleaning the INSIDE of my house like crazy for my very-soon-to-be-SEVEN-year-old-daughter's POOL party tomorrow.

Like who is going to care if the tile was mopped by hand or by a mop?

Why am I telling this to my Crohnie followers?

Just to let you know that there is hope.

That you can have days where you feel well enough to mop 1,100 square feet of ceramic tile, be it by hand, or be it by mop.

Hope.

What a glorious word.

Conundrum

2009-06-18T23:52:00.003-04:00

One of my most favorite words in the English language.

Conundrum.

I have others too.

Menagerie

Buffoonery

Quagmire

I think you get the drift.

So here is my conundrum, today.

I have pain.

No news there.

Not so-horrible-I-want-to-stick-a-hot-poker-in-my-eye-in-the-hopes-of-releasing-endorphins-pain, but significant pain nonetheless.

And I have pain meds.

Good ones, if you know what I mean.

They take the pain away.

But sometimes, they make me mean. (Or Mean-er, if you ask my husband).

And sometimes, they make me depressed.

And I have meds for that too.

And no, I really and truly believe that I do not have a prescription drug addiction problem. I would say that most definitely, I am a drug USER, but I don't think I am a drug ABUSER.

So the conundrum is.....

Take the pain meds and be comfortable and sometimes mean,

Or don't take the pain meds and be uncomfortable and irritably mean?

Or do whatever I want until Monday, when I finally meet with a pain management specialist in the hopes that we can get all my different pains in all my different areas treated with different meds?

And therein lies the conundrum.

Monday is four days away.

I think my family can endure four more days of some level of meanness.

At least I'm hoping they can.

Heckfire, maybe I'm just mean all the time, but I only notice it when I take the drugs???

Do NOT answer THAT!

Forgetfulness

2009-06-17T15:29:00.002-04:00

Forgive me, friends.

I forget to post on this blog when things are going well.

Because this blog, for me, is about venting.

And when one is feeling well, one has no need to vent, right?

So what I'm trying to say is, I'm feeling pretty good.

Praise God....AGAIN!

The combination of new drugs, the restart of the Remicade treatments, and the addition of steroids has made me pain free.

Not symptom-free, but pain free.

I can live with symptoms. And I can live with some pain. But I cannot live like I was living before the pain went away. So I am just thankful that it did.

And the bet I made with God? I'm still keeping my end of the deal. I get up each and every day, and I am productive. I am not taking a single day for granted. Okay, sometimes I take a nap. But I'm pretty sure He's okay with that. Even HE rested on the seventh day, right?

I have my next Remicade treatment the last week of June. Not thinking about or worrying about it until it gets here. It is going to suck, but it will be temporarily sucky. And then it will be six weeks til the next one. And then eight weeks from thereafter.

It is going to take some time for me to get this new doctor/fire old doctor situation squared away. So I'm not sure exactly when I'm headed to UF Shands, but since I'm no longer considered 'emergent', there really is no hurry if my symptoms and pain are controlled.

I am headed to a pain managment specialist next week, at the urgency of all my physicians. I have different types of pain in different areas of the body, and not one pain medication works for all of them.....so off I go to a pain doc. I'm cool with that. I think it's a great idea, and I wish they had thought of it sooner. Oh well. Nothing ventured nothing gained.

I will try to keep posting even when things are going well.

Or, you can always check out my other blog, which is filled with laughter and mayhem, which I post every day:

http://poopinmypocket.blogspot.com

Releasing the Albatross

2009-06-12T10:25:00.002-04:00

As I have posted in the past, I have been blessed for eight years with a remarkable GI, Dr. Hank, who specializes in Crohn's Disease.

For eight years, Dr. Hank has been there for me.

I have Dr. Hank's cell phone number.

Dr. Hank calls me in the middle of the night with test results.

Dr. Hank has asked me to assist him in launching a local chapter of CCFA (the Crohn's and Colitis Foundation of America).

I believe that Dr. Hank had a big part in the miracle conception of our two babies, as it is difficult if not impossible for Crohn's patients to conceive. Yes, I know God was the primary miracle provider, but God also enabled Dr. Hank with skills and knowledge.

Dr. Hank has pictures of those two miracle babies in his office.

To say that Dr. Hank has been an important and integral part of our lives over the past eight years is one of the biggest understatements I could ever make.

But in the past 60 days, after much prayerful consideration, after a period of agony and thoughts of suicide, and many, many, many lengthy discussions with Billy, Billy and I have decided that it is time to move on.

I am leaving my comfort zone of Dr. Hank, and getting a new gastroenterologist.

Specifically, I will be getting a whole TEAM of gastroenterologists.

I was 90% sure of my decision before I had my Remicade treatment two weeks ago.

But Dr. Hank himself made the final decision for me.

When the nurses called Dr. Hank to tell him the severity of my reaction to the Remicade, he eventually wandered over to the infusion lab.

As Dr. Hank walked in the door, this is how he greeted me:

"Well.....if it isn't my ALBATROSS."

Friends, I know what albatross means - "most legendary of all birds".

But let me illustrate for you what Dr. Hank's statement really meant to me:

According to Wikipedia, Charles Baudelaire said it best in a poem, using albatross as a metaphor for someone with a burden or an obstacle, that they have,

"an albatross around their neck"

Well, Dr. Hank. I am your obstacle, your burden, your ALBATROSS, no more.

If I had become such an obstacle, such a burden, such an ALBATROSS, all you had to do was tell me.

If you were as professional as I thought you were, you would have said to me, "I can no longer help you, but I can help you to find someone who can."

But he didn't.

Dr. Hank said, "You are going to have pain. You're going to have to live with it. Accept it."

To which Heather Fallon replied, "BULLSHIT. UNACCEPTABLE."

Dr. Hank's next words to me were, "There is NOTHING more that can be done for you."

To which Heather Fallon replied, "Nobody backs FALLON into a corner. Nobody."

The Albatross has been released.

The Albatross has found someone who not only BELIEVES I can be helped, but is EXCITED about helping me.

The Albatross' new doctor insists that I need to be consulted at UF/Shands Hospital in Gainesville, where the Southeastern Center for Inflammatory Bowel Disease is located.

The Albatross' new doctor believes that now that my disease has spread to my entire digestive system (yep, stem to stern), that I need to be seen by clinical researchers who are involved with cutting edge, up to the second, research on Crohn's Disease, in particular, the rarest of all versions of Crohn's Disease - duodenal Crohn's Disease.

The Albatross' new doctor says that there are approximately 250 people (yes, TWO HUNDRED AND FIFTY) people in the UNIVERSE with Crohn's Disease in the state that mine is now in.

The Albatross' new doctor thinks that Dr. Hank is a wonderful physician. But he also believes that Dr. Hank may not have ever seen someone with my disease in the state that it has evolved to, and he is having difficulty accepting that he personally cannot help me, and that I shouldn't be angry or disappointed, but that I should be thankful for the eight years that he gave me, and that Dr. Hank should understand and respect my decision to do all that I need to do to elongate my own life.

The Albatross is in complete agreement. I am so very thankful for Dr. Hank. I will cherish his involvement in my care for the rest of my days. I will remember him, honor him, and recommend him. I am no longer angry, no longer disappointed. I have given it up to God, and God has gifted me with the grace to forgive Dr. Hank for his professional shortcomings. Dr. Hank and I have different faiths, but we share the same God. Dr. Hank has prayed for me. He has told me so. I cannot harbor anger towards a man who has prayed for me, cared for me, healed me. I love him still, and I forgive him.

The Albatross' new doctor has a whole new perspective on the management of my illness.

The Albatross and her new doctor AGREE and have already established a COMMUNAL relationship, not one in which the doctor drives the boat, but one in which the patient and the doctor WORK TOGETHER to keep the patient ALIVE as long as possible, to keep the patient as COMFORTABLE as possible, to keep the patient OUT OF THE HOSPITAL as much as possible, to keep the patient AWAY FROM A SCALPEL for as long as possible.

The Albatross is no more.

The battle continues.

Heather Fallon is back.

Bring it, Crohn's Disease.

Bring it.

Reaction

2009-06-02T02:37:00.004-04:00

~

It is 232 am, MY time.

Yesterday, I had my second loading dose of Remicade. For those of you who don't know what Remicade is:

It is a type of chemotherapy that is infused via IV into your body over a period of time, in my case, four hours.

It is called a TNF-blocker. TNF is a protein made by the brain. In Crohn's Disease and Rheumatoid Arthritis patients, our bodies make too much of this protein. This excess protein then attacks our bodies - with RA patients, it attacks the joints, sending the body into an inflammatory state. With Crohn's patients, it attacks the digestive system, mainly the intestines, sending the body into an inflammatory state.

For 9 years, I have been a Remicade patient. The only time I ever went off the drug was to attempt to get pregnant and have children. Giving all the praise to God, it worked, and we were able to produce two of the most beautiful, brilliant, HEALTHY babies EVER. And then, last year, a decision was made by the trinity (me, Billy Two Swords, and Dr. Hank), for me to stop taking the Remicade.

Here is why:

My immune system is fucked up. Hence, I have Crohn's Disease. For whatever reason, genetic, viral, environmental factors, who freaking knows, my immune system is on a mission to DESTROY my digestive system. No one knows why, it just is. The Remicade is an immunsuppressive. Meaning, it tells my immune system to stop working. Therefore, I am susceptible to a whole host of germs, infections, some I had never heard of before I got them: MRSA, pancreatitis, gastroenterities, pneumonia, strep infections on my FINGERS. Yeah, Heather Fallon doesn't a cold. She gets pneumonia. I had contracted too many secondary infections as a result of my suppressed immune system, that the trinity made the decision to stop the Remicade. After I stopped, I had surgery to correct a perianal fistula (which the Remicade was helping to heal, as well as settling my intestines into a milder state of disease). This seemed like a brilliant decision at the time. The surgery was a success (with the exception that I no longer have full bowel control, but whatever, I'm living with it. Most importantly, I'm still living.) And I then entered a symptom-free state of remission that I had not known in nine years. I was so healthy! I was a new person. And then in January. It was back. And it had moved. To my duodenum. And I was told that Remicade was my ONLY 'hope'.

In addition to having an already misbehaving immune system, my body REJECTS Remicade. The one time that I need my immune system to NOT work, to just shut up and be quiet and don't fight......it decides to attack the Remicade with a vengeance as it is being infused into my body.

Let me describe for you the vengeance that occurs EVERY SINGLE TIME I have a Remicade infusion.

Yesterday, I was pre-medicated with the following meds and doses (this might not mean much to some of you, but trust me, it is an ABSURD amount of medication):

50mg of Benadryl
100mg of Solumedrol
1 Valium

The nurse began to infuse the Remicade. I fell asleep.

EXACTLY one hour and 15 minutes later (like clockwork, happens EVERY F'in TIME),
the reaction started. It wakes me from a dead sleep. It begins in my toes. Like iodine dye that is injected into your body for imaging tests, it's that kind of feeling, that it goes through every vein in your body, except this isn't just a warm funny feeling. I've never had electroshock therapy before, but I think this might be pretty close. It is as if electric currents have been injected via my toes, then crawl up my legs, into every part of my body. By the time the current gets to my chest, my lungs feel like an elephant is sitting on them. Then I start to turn beet red. My face turns the color of a cooked lobster. I started screaming for help. Sometimes I break out into hives. Sometimes my arms and legs start to flail. Always I am sobbing and moaning. My blood pressure starts to bottom out, and my pulse goes through the roof. And then I start to scream, "MAKE IT STOP! MAKE IT STOP" "HELP ME" "HELP ME" "Dear God, PLEASE make it stop". This all takes place over a period of SECONDS. And it is the most terrifying experience. The feeling that something is taking over your body, and you have absolutely NO control.

The nurses were wonderfully quick, attentive, and ready. They immediately stopped the Remicade and increased my fluids. I got re-dosed with the following:

50 more MG of Benadryl

I did not go back to sleep, as most would have expected (including myself)

In the past, at this juncture of the treatment, the reaction usually stops and the infusion proceeds as if nothing happens. Not yesterday.

They re-started the Remicade.

Not more than 15 minutes later, I was in terrifying agony once again. They stopped it, increased the fluids and gave me:

Versid

Versid usually sends me into twilight la-la land.

Nope. Not this time. Still wide awake.

They re-started the Remicade.

The palms of my hands broke out into hives. Oh, I have gotten hives before, but never in the palms of my hands.

They gave me more Versid.

No change.

My throat started to close up.

They gave me another 100 mg of Solumedrol.

At least I was able to swallow again.

Still having the electrical current raging through me. Still having hives on my palms. Still crying and sobbing and saying, "I hate this, I hate this, I hate this, I am NEVER doing this again."

We are now three hours into an infusion which would ulitmately take six hours on this given day.

Even though they said they had given me the maximum of Benadryl, they went ahead and gave me one more 50mg dose of Benadryl. That is a grand total of 150 mg of Benadryl. I think most people would sleep for a week if they were given that much Benadryl. Oh how I wish I could have. Or just have slept through the remainingly anagonizing three hours.

It didn't have much effect.

I told them to FUCK it. Crank that damn Remicade up as high as it would go, and get me the Fuck out of there. In true Heather Fallon one-day-at-a-time fashion, I analyzed my situation. Yes I was in misery. But I knew, as soon as that drug was in me, and the infusion was OVER, I would feel fine. I just had to get through two more hours of absolute hell on earth. I looked at the bag of Remicade and calculated the two hours on my own. I started counting the drips. I knew I wasn't going to die, it was merely an issue of suffering. I wiped my tears and breathed deeply. I gave it up to God. Then it became 90 minutes. Then it became 60 minutes. I asked the nurse to call Billy Two Swords to let him know what was going on, and why I was running so late (it was kinda hard to talk with a swollen tongue and throat). I asked her to call my ride, my BFF K, and let her know what was going on, so she would know what time to pick me up.

And I prayed that God would get me through the next 60 minutes, because there was no one else or thing that could.

He did.

I got through it.

And here I am at 230 in the morning writing about it.

Remicade.

A drug that may save my life.

A drug that may kill me.

A drug that may give me lymphoma.

A drug that costs $15,000 per dose.

Why, you ask.

Why, do you do this?

It works.

That's why.

It sucks big, hairy, buffalo balls, but dammit, it works.

I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT I HATE IT

But dammit it works.

"Suffering produces endurance and endurance produces character and character produces hope" - Romans 5:3-4

God is good. All the time. All the time. God is good.

Four more weeks til the next one.

And not going to think about it until I get there with an IV in my arm.

That's how I roll.

One day at a time.

I have a little girl's birthday party to plan.

I have no-school summer activities to figure out.

I have a lengthy vacation road trip to coordinate.

I have cookies and cupcakes to bake.

I have church volunteering to do.

I have a God who needs to be glorified.

I have a bedroom renovation that will require my assistance.

I have a household to run.

I have a husband to snuggle with.

I have a dog who recently became blind in one eye who needs me.

I have lots and lots of hugs and kisses to give.

I have people who are counting on me for love and laughter and friendship and fellowship.

I have an example to provide, to all those who are suffering.

I have a life to live.

"There but by the grace of God, go I." - John Bradford

Lazarus and Betting with God

2009-05-30T12:27:00.004-04:00

Since my miraculous 'recovery', my week has consisted of the following:

Cleaning house like a madwoman. Mad, as in, obsessed.

Errand running and shopping.

Attending worship for the first time in six weeks.

Traveling to Crystal River to see my parents.

Designing a new master bedroom suite.

Moving furniture and packing/unpacking closets to prepare for demolition of said new master suite.

Pilates.

Volunteering two hours at church to fold bulletins.

Purging hand me downs and packing eight huge garbage bags for the thrift store.

Enduring the NBA conference finals (trust me, this is most definitely an endurance test if you are married to my husband).

Buying groceries for our church food pantry.

Trying to eliminate the inches of drywall dust that cover every inch of our house due to the remodeling project.

Building a pirate ship.

It is important for me to note all of these things I have done in the past week, because I kinda made a bet with God.

When I thought I was going to die, even if it were at my own hands, I promised God I would never take another day for granted. That my idea of feeling 'okay', would someday mean I was feeling 'great'. If HE would just make me better than I was.

Well.

HE did.

And I am keeping my promise.

We had a bet, after all.

When I was at church the other day, folding away, Pastor C. saw me and had a huge smile on her face.

She said, "Heather! You are back! It's like you have risen from the dead!"

Amen, sister.

Just call me Lazarus.

Slow Fade

2009-05-26T16:23:00.002-04:00

As difficult as it is for me, I need to write this post. It is a testimony, and as your Christian sister, I am obligated to share those.

Thirty days ago, I thought I had lymphoma.

Two weeks ago, I thought I had a bowel obstruction and was going to need emergency surgery.

One week ago today, I thought I was going to die at my own hands. It was the only way I knew to stop the pain.

It is true. Much as I hate to say it, write it, think it, remember it. I thought about it. I cannot lie.

But God saved me.

Like always.

And here's how He did it.

One week ago today.

I was wandering through the house, a zombie, in horrible, intractable pain.

Popping pills every few minutes. Lots of pills. Any kind of pill. Anything to kill the pain.

Nothing worked.

Nothing took the pain away.

Nothing.

Nothing took the pain away.

I could not eat.

I could not sleep.

I could not think.

I could not talk.

I could not sit.

I could not lie down.

I can't even tell you what I COULD do.

I watched my dear, sweet husband watch me suffer. That provided even more angst.

I started to seriously worry about his mental state. How strong was he? Could we get through this?

At some point, the song "Slow Fade" from Casting Crowns crept into my head and stayed there.

For hours upon hours.

This is what pounded in my head, over and over and over and over again:

Daddies don't just crumble overnight.

It's a slow fade.

Families don't just crumble overnight.

It's a slow fade.

Finally, I grabbed my bible.

"Slow Fade" still pounding in my head

I read the entire book of Job.

I prayed through the entire book of Job

As I read, and prayed, and "Slow Fade" kept pounding, God spoke to me through it all.

I had to trust Him.

He had always been there before.

And He would be there again.

Somehow, this was all part of HIS plan.

It wasn't up to me to know how or why, it just WAS.

The "Slow Fade" pounding stopped.

And 48 hours later, I was pain free.

Be Still and Know That I Am God - Psalm 46:10

Hope

2009-05-21T13:14:00.000-04:00

Hello again, friends.

It is high time for me to thank all of you for your love, support, prayers, karma, uplifting words....we have felt them all, I promise you.

And for those of you who are getting tired of hearing the tribulations of Heather J., well, I am sorry.

I am getting tired of talking about them.

I am way too tired of living it.

Nobody wants it to go away more than I do.

But alas, it won't.

And more are wanting an update than telling me to shut my piehole, so here it goes.

Today we have hope.

We haven't had it in a very long time.

I have duodenal Crohn's Disease.

I knew that.

Not only do I have duodenal Crohn's Disease, but I have fistulizing Crohn's Disease.

Don't know what that is?

Look it up, or just trust me, it sucks.

I am in the .05% of a disease population of 1,000,000.

I have an incurable, chronic, debilitating illness that is extremely difficult to manage, to control, to diagnose, to maintain, to explain.

But I have a new team of doctors that is expanding by the day.

A fresh approach.

An out of the box way of thinking.

I have to regroup and accept some harsh realities, but I do not have to give up.

I will never be healthy.

I will never run a marathon.

But the reality I have today will not be my only reality.

I will never surrender.

To God be the glory.

And to Team Fallon - can't imagine three stronger warriors to be on my side.

No matter what the battle.

Faithfully,

HJF

And......

2009-05-20T13:24:00.002-04:00

We are headed to a general surgeon consult in Clermont tomorrow at 830 am.

Praise God....

Dr T. was awesome.

Not ruling anything out....pancreas/liver/heart/PID/Crohn's.....apologized profusely that he didn't have an immediate answer for us.

Said the stainless steel coils could be plausible.

Said that all the imaging tests I have had may not show the whole picture.

Did not dismiss my pain as imaginary.

Treated me like a real person.

Wrote a script for some Valium so hopefully I can rest.

Still waiting for OB GYN to call me back....

Onward we trudge.

Just Maybe

2009-05-20T07:49:00.002-04:00

I have an idea.

I think I know what it could be.

Could my body be rejecting the stainless steel coils that were implanted in my tubes in March?

Maybe?

If so......

Could be such an easy fix........

Calling Dr. Ashley right now..............

Daktir Oknahd and the Descent Into Indian Madness

2009-05-19T19:05:00.002-04:00

So.

Everyone is already painfully aware of my painful circumstance.

All I have been trying to do is put out the fire in my stomach. Nothing seems to be working. I might get an hour or two of respite, but that's it.

I am headed to Doctor Primary in the morning. I will not be denied an answer, another option.

In the meantime, I had to go for my independent observation by a psychiatrist for my disability application.

So there I go.

To Daktir Oknahd.

(Please note that this is my blog, and I reserve the right to be stereotypical or offensive. If you don't like it, go the hell away.)

So Daktir Oknahd says to me: "Aaaaah... You ha brane inyuree?"

GIRL WITH FIRE IN HER GUT: "No. I do not have brain injury."

Daktir Oknahd: "Aaaahh.....No?"

GIRL WITH FIRE IN HER GUT: "No. I have Crohn's Disease."

Daktir Oknahd: "Aaaahh......ehhhhh????? You ha brane inyuree?"

GIRL WITH FIRE IN HER GUT ABOUT TO PUMMEL HER FISTS INTO THE FACE OF DAKTIR OKNAHD: "Hello? I have Crohn's Disease. Intestines? Inflammatory Bowel Disease? Hello? Are you a doctor? Or did you just stay at the Islamabad Holiday Inn Express last night?"

Daktir Oknahd: "Aaaahh......" (and then she wrote down the following)

brain injury? corns disease?

We proceeded with this "Aaaaaaaaaaaaahhhh.....ehhhh????" nonsense for 15 minutes or so.

She asked me if I ever wanted to harm anyone. I lied. Since yes, I wanted to harm HER....but I told her No.

She asked me if I ever wanted to hurt myself. I told her of course not, I just wanted to feel BETTER. Why would I want to hurt MORE?

She insisted that she had to ask these questions of everyone, that she was only doing her job.

When I told her about my condition, my surgeries, my treatments, she had absolutely no idea what I was talking about.

When I said I was on a medication that HAD TO BE INFUSED....she made me write the words down.

I pointed to my veins in my arm, and said, "Hello???? I....V....?????"

Daktir Oknahd said, "I....V.....M.....?"

HELLO?

I.

V.

!!!!!!!

I don't think this "MD" had ever heard of Crohn's Disease.

Since people in Dubai don't get it. Duh.

Is this my life?

Seriously?

Is this my life?

Is this a bad television episode?

One Month

2009-05-18T13:44:00.002-04:00

I was just re-reading my blog.

It is difficult to grasp that I have had this pain for thirty days.

How much longer must I suffer?

And all I can do is look at my poor, sweet husband, who has been watching me wither away. He loves me so much. And he wants so desperately to fix me. And he is as scared as I am, if not more so. I fear that I am dragging him down with me into a pit of agonizing despair. It is so difficult for him to remain strong for the children. I am supposed to be the strong one. It has always been me who has carried the emotional load. Everyone tells me so. Everyone. Heather, you are the strongest person I have ever known.....

Not now.

Not today.

Not in awhile.

The doctors have told me there is nothing they can do for me. I cannot eat anything. Nothing kills the pain. What am I supposed to do? Just sit here and cry and moan and shrivel into NOTHING?

NOTHING?

And I'm not even dying or anything. Or so they tell me. They believe I have the pain, but they don't know why. That they've done all that they can do. Why is this so hard for me to accept?

I want to lie in my bed, with my husband, and my children, and just hug. And just be loved on. Like a puppy. I just want them to pet me like they would a new puppy.

Perhaps

2009-05-18T13:33:00.003-04:00

I think I know what dying feels like.

Lord, I pray that I am wrong.

Honestly, this is a pain like no other.

The only thing that takes away the raging pain in my stomach is images of the faces of the three most precious to me. I cannot bear the thought of being without them, them without me. I am so madly, deeply, passionately in love with my husband, my daughter, my son. They have given me the life once thought not possible. A life filled with laughter and joy. A happiness fulfilled. They are who I am. I am who they are. We are one. We wouldn't be the same if we were only three.

I have bragged in the past that I don't cry.

I am crying now.

I don't want to write my funeral instructions.

I don't want to hurt.

I don't want to see the pain of the faces who are watching me suffer.

I don't know how to bear this.

Heal me God.

Please.

Home

2009-05-16T12:07:00.000-04:00

Hello, friends.

I am home.

As I write this I am shaking like a leaf.

After 10 days in the hospital, I feel like an astronaut touching the earth for the first time since orbit.
Shaky, indeed.

I don't have much to say, really.

I can tell you what the doctors told me, and did.

I have a stricture (narrowing) in the area between my stomach and small intestine.

This causes me great pain, and my food takes eons to completely digest.

They cannot, or will not operate on this area.

I am not a surgeon.

But I was told by one that if I had this surgery, I would die.

Just like that.

That's what he said.

I think it is because of the risk of infection, and my already warped immune system that doesn't know how to behave.

That being said, I wasn't really given any choices.

I am now back on Remicade.

A drug that is infused into your body over a period of time, like chemotherapy.

A drug that consists of mouse antibodies.

A drug that my body chooses to attack and reject each and every time it is administered.

A drug that may ultimately kill me.

A drug that potentially may elongate my life.

So those are the facts.

Please don't ask me how I feel.

I haven't quite figured that out yet.

And God Said HA!

2009-05-05T19:44:00.001-04:00

Hello friends.

All of you have been praying for me recently as I enter unchartered waters with my Crohn's Disease.

I am writing to let you know the latest information, as well as to ask you to continue to pray for me, Billy, Reilly, and Jake.

As most of you know, I have been experiencing a heightened state of disease the past 30 days, with symptoms that now include lymph node involvement, and a 'mass' on my kidney.

Today I had a digital capsule study, which was supposed to entail a 360 degree picture of my entire digestive tract.

My doctor phoned me an hour ago to inform me that in addition to having a significant exacerbation of my disease, I have an obstruction between my stomach and small intestine, and that the digital capsule got 'stuck'.

I will be having an abdominal x-ray in the morning to determine the extent of the blockage.

An emergency surgery to correct the obstruction is probable.

As you can imagine, we are obviously concerned and leery, but comforted in our faith, family, church, and friends.

We know that God is at the helm, and He will ultimately be glorified.

Thank you for your love, and the armor of protection that you have shielded us with.

Either Billy or myself, or someone from church will continue to keep you updated.

Humbly,

Heather

Innerspace

2009-05-05T08:38:00.003-04:00

This morning I swallowed Martin Short.

Kinda.

Remember the movie "Innerspace"?

Well, I swallowed a pill the size of Lichenstien today. It had flashing blue lights.

Allegedly, this pill will transmit photos of my guts over the next 8 hours.

I made the mistake of asking the nurse if she wanted the capusle 'back'.

She was horrified.

I told her I wasn't sure what I was supposed to do with it - it looked expensive! And like a piece of modern art. And I really wasn't convinced that Martin Short WASN'T in there.

She told me I was more than welcome to keep it as a souvenir if I wanted.

I assured her that yes, I am a crazy scrapbooker who saves some pretty weird items, but NO, I was not going to dig through my own poop to rescue Martin Short.

Now if it were Christian Bale, that would be another story entirely.

Alas.....stay tuned for digital capsule study results coming to a blog near you!

Waiting

2009-05-01T08:17:00.002-04:00

~

Hello friends.

Not much 'news' to report.

Just waiting.

Waiting for them to figure out what the heck is attacking my body.

Waiting for test results and two more tests to happen.

Waiting for a surgeon to be selected.

Waiting for God to tell me what the heck he is trying to tell me.

But oh so very thankful for the literally thousands of people who have prayed for me this week.

In addition to my phones ringing off the hook with people calling to me/us how much they love us and how much they are praying for us and if there is anything they can do all we have to do is ask.....

In addition to ALL of those miraculous blessings.....

My family was honored with a healing prayer service at our wonderfully prayerful church last night. Billy and I sat in chairs, each with a bambino on our laps, while a mulititude of our church family laid hands on us and prayed for me, for us, for the doctors, for God to cast out the evil that Satan is raging in my body. All four of us were bawling. Jake kept hugging my neck tighter and tighter. I can remember somebody stroking my hair while they prayed - I have no idea who it was, but I was touched beyond words.

So today, God has worked a miracle. I still have all of the same symptoms I had yesterday, but today I am peaceful. That in itself is truly a Godsend.

Onward we trudge.

By the Grace of God, I am.

Belittled and Bewildered

2009-04-27T23:00:00.002-04:00

~
Doctor Hank called at 830 pm.

I love my doctor.

How many doctors call their patients themselves, at 830 pm on a Monday?

MINE does!

Moving on....

The abdominal CT results are in...

Hold on to your seats.....this one could be a wild ride.

I have an ovarian cyst that was NOT seen in March during my tubal procedure.

It was also NOT on my last CT scan that was done in January.

Hmmmmmmmmmmm.

Or in true Heather Fallon fashion -

WHAT THE FUCK?

Doctor Hank told me 'get this taken care of right away'. Okay, dude, I got it. I'll call THAT doctor tomorrow.

In addition, according to Dr. Hank, I have unusual lymph node 'activity' (WHAT THE FUCK?) in the abdominal area. Huh?

Oh yeah, and one more thing.

We reviewed my current status, pain level, symptoms, etc.

Dr. Hank said, (AND I QUOTE) "I don't mean to belittle you, but your symptoms do not correspond to your scan."

YEAH?

AND?

Let's recap:

Ovarian cyst that just sprouted to life in the past 30 days
Unusual lymph node activity in my abdomen
Anecdotal symptoms that do not match scientific fact

Here we freaking go again.

Nothing is easy for me. Not even math.

Dammit.

My only question is, which fire do we fight first? Does it even matter?

Please pray for me as I am about to descend into mis-diagnosed, un-diagnosed, obscure-chronic-illness- HELL.

To be continued.

2009-04-25T20:31:00.003-04:00

Not much to report.

Had the CT scan on Thursday.

No results yet.

I'm still a 7 on the pain scale. With moments of 9. Awesome.

I am less miserable. Which I think is a result of getting used to the suffering, not that the suffering has subsided. It's a time/space/suffering continuum. Awesome.

The only thing that helps is eating. Strange. So now I'm shoving food in my piehole like there's no tomorrow. So in addition to being sick, I'm getting fat. Awesome.

I am also experiencing circulation problems in my legs and arms. My legs feel like they each weigh a hundred pounds. My hands and arms tingle with the slightest bit of inactivity. I am silently wondering if my AVN is rearing its ugly head (which was only diagnosed in my knees), or if this is another autoimmune problem, or something else we haven't seen before. Awesome.

The arthritis in my spine has exacerbated. When I bend over, or get up after sitting or sleeping, it is excruciating. I have to stand at a 45 degree angle for a few minutes, to ease my self into the vertical position. I look like a hundred year old woman, all bent and hunched over. Awesome.

Hopefully I will hear from my doctor on Monday, with CT results, and some sort of 'plan'.

(For those of you who don't 'know' me, the AWESOMEs in my post are sarcastic).

That's all I got.

Failure

2009-04-21T18:37:00.002-04:00

~

It has been 9 very long, very painful, absolutely AGONIZING days.

On Friday, when I went to see Dr. Hank for an emergency work-in appointment, my pain level was a 9 out of 10.

Keep in mind that I have had many painful surgeries, two births (one of each kind), a MRSA infection and subsequent excision (that I was awake for), and I once dropped a fire extinguisher on my foot in the garage. All very painful experiences.

So for this recent 'problem' to warrant a NINE, believe me, it sucks.

According to Dr. Hank, I have "failed" Cimzia. I yelled at him for saying that. Swear. Why couldn't he have said, "Cimzia failed YOU"? Right.

Anyway.

The newest meds he has prescribed have improved me to about a 7. But I have moments of 9. But since there has been improvement, I am trying desperately to remain (or become) positive.

On Thursday, I am having a CT scan.

Dr. Hank thinks my duodenal Crohn's has spread since January, and has not been helped by the Cimzia.

The good news (I try so hard to focus on scraps of good news) is that my intestines have improved. So I think the Cimzia was working there at least.

Duodenal Crohn's is the rarest type of Crohn's Disease. Imagine that. I told Billy that I always wanted to be in the .5% of something. I just didn't have this kind of notoriety in mind.

Not only do I feel as if my stomach, esophagus, and mouth are AFIRE, I have 10-20 diarrheic bowel movements a day. My mouth has no less than 11 painful, bloody sores. My voice sounds like Kim Carnes in "Bette Davis Eyes". The acid continues to make its way into and out of mouth.

I have not left my house since Friday, and that was only because I had to see Dr. Hank.

We are in unchartered territory here. Dr. Hank is already talking about 'what we do next'.

I just want the agony to cease.

I don't give a damn what we do next.

Really, I don't.

Even though it looks like Remicade is back in my future.

Don't care.

Don't care.

Don't care.

The pain HAS to go away.

I have become nothing but a whiny, worthless blob of a person.

Thank you JESUS, that my dear, sweet, husband has been such a blessing through this past week. Sometimes he gets sick and tired of me being sick and tired. But this week, he has been nothing but supportive. He has stayed close to home, and been there for whatever I have needed. I haven't even had to ask him. He knows I hate this. He knows I am not milking this. He knows I would rather be fishing.

Onward we trudge.

~

Eleven

2009-04-16T11:53:00.001-04:00

That is how many times I have gone today.

And it isn't even noon yet.

And I just had my Cimzia injections on Tuesday.

And I have been in unbearable pain since Monday.

Nothing makes it go away.

It is in the 'new' area.

That was diagnosed in January, but I haven't felt anything there since now.

Right in the midsection, starts in the middle, goes all the way through to the back.

I am at a loss.

I do not understand.

Agoraphobic?

2009-04-08T11:53:00.002-04:00

~

On the rarest of occasions, do I want to leave my house.

Am I depressed?

I don't think so. I take meds for that, and I seem to be upbeat. I'm not crying or anything.

Am I agoraphobic?

I don't think so. I am not SCARED to go outside. I just don't want to.

Am I antisocial?

No question. Always have been. Probably always will be. Not anti-social really, just un-social.

Am I lazy?

Historically I haven't been lazy. But I guess you could say I have become lazi-ER in the past year. Like now, I don't HAVE to get up to go work every day, so it's really hard to want to get up at all. And have so much time on my hands, I really don't feel pressured very much.

So is there something wrong with me, or have I just figured out how to be a lazy, unsocial, agoraphobic and get away with it without having an intervention?

Or am I entitled to be this way since I'm chronically ill and hopefully "officially" disabled if my paperwork goes through?

Or does this post prove that am I totally, utterly, completely insane?

I am curious to hear the opinions of others....

As long as they are 'friendly' of course.

~

Running With The Devil

2009-04-02T16:08:00.002-04:00

~

I met with the devil today.

He was not expecting me.

Better than me not expecting him, for sure.

He had two heads.

And four eyes.

And the eyes were black.

And they got blacker by the millisecond.

I saw the personfication of anger, hatred, and evil, all at once, pointed in my direction.

I was surrounded by an armor of God, by the strength of a thousand Christian soldiers, and a couple of really good men.

I went running with the devil today.

The devil was cast out.

And I have lived to tell about it.

God is good.

All the time.

BE STILL, AND KNOW THAT I AM GOD - Psalm 46:10

Far and Away

2009-03-22T20:11:00.002-04:00

~
You haven't heard from me in awhile.

I know.

I suck.

But guess what that means?

I AM FEELING BETTER!

Praise God!

The Cimzia is working.

To all you Crohnies out there.......maybe it will help you too.

I have just had my third treatment. Each treatment consists of two injections into my stomach.

Side effects:

I sleep like Rip Van Winkle for two solid days - no big deal.

Mild redness at the injection sites - so far, nothing to worry about. And my nurse had the bright idea to inject higher than the waistband of my sexy lowrise jeans, so the redness is less this week.

Itching. Nothing that Benadryl can't handle.

I am so excited and so hopeful about what this drug could mean for me, for all of you, for everyone......

I am back.

To my hippity, hoppity, mouthy, cocky, up and at 'em self.

And not a moment too soon.

Thank you Dr. Hank.

Thank you Cimzia.

Thank you God.

~

News Flash

2009-03-11T21:18:00.001-04:00

~

Reports of my death following a hysterectomy are greatly exagerrated.

I'm still here.

Like it or not.

~

Predicament

2009-03-07T07:19:00.002-05:00

It is difficult to explain Crohn's Disease to anyone.

It is nearly impossible to explain it to children.

But mine are trying to understand. The best that they can.

But immunosuppression?

They can't get their little brains around that one.

And now they both are sick.

And who do they want to take care of them?

Mama.

And who wants to take care of them?

Mama.

What have the doctors told me to do?

Stay away from sick people.

What am I doing?

Loving on my children, wiping their noses, hugging them, sleeping with them, and praying that I don't get sick.

And washing my hands eleventy thousand times a day.

I'm doing what I'm supposed to be doing, as God wants me to do, and as the maternal instinct is directing me to do.

I can't worry about potentially getting a cold, when I'm already 'sick'.

God is just going to have to take care of the rest, as I take care of the little ones.

Miracle?

2009-03-05T22:30:00.002-05:00

The Cimzia is working.

PRAISE
PRAISE
PRAISE GOD!!!!!

I had my second round of shots on Tuesday.

Side effect?

Exhaustion.

I felt like Rip Van Winkle.

Like I could sleep forever.

But.........

On Wednesday, I was up early, and full of energy, and had very little pain, and felt like a whole new person! I went and got my much needed hair cut and color, and started to fall asleep in the chair! Which is typical for some people, but highly unusual for me... Thankfully, I have a most supportive and accommodating husband, so I was able to come home and crash.

Today, I was filled with energy. None of the lethargy from yesterday.

In summation....no reaction to the injections this time (an improvement from the first treatment); just very tired for a day and a half (an improvement by a day), AND, I look great. Even I can tell that I look better.

We trudge on.........

A sidenote - I am getting my tubes tied on Monday. I don't want to, but I have to. As a condition of taking this drug. I cannot get pregnant. My battered and beaten body just can't do it again. And the drug is very potent. Because I am fiercely anti-abortion, I couldn't handle being faced with potential decisions that I can't even wrap my head around. So.......I'm taking matters into my own hands (with the loving support of Mr. Hurricane of course), and just getting it done. I am blessed with phenomenal, God-loving physicians, who communicate with each other, know me as a person, not just a patient, and seem to truly give a damn about me and my desire to live as long as possible to see my beautiful, miracle babies grow up.

So........it's not a big deal of a procedure, home in one day, no incisions, and the grandparents are here to help with the bambinos.........but........if you could take a few minutes of your day and say a little prayer for me and for us, I know that I would feel it.

Thanks again for your continued love and support.

It may be a few days before you hear from me again, but know that I'm still out here!

HH

Nothing

2009-03-02T11:36:00.000-05:00

is working.

Three whites and two blues.

Nothing.

One more day.

Sigh.

Can U Tell Me Y?

2009-03-02T09:50:00.002-05:00

~

Yesterday, I ate Chex Mix, Pizza, and Red Velvet Cake Ice Cream.

All of which are either fibrous or bulky.

Can you tell me why....TODAY.....all that is coming out of me is WATER?

Oh right.

I have Crohn's.

That's why.

Silly me.

~

Thirteen Days

2009-03-02T08:21:00.003-05:00

~

Today my guts woke me up.

I'll spare you the details.

But I wonder how many of you have ever been woken out of a dead sleep by your guts, not your bladder.

It sucks.

I have my next Cimzia treatment tomorrow.

Exactly fourteen days from the last one.

My guts lasted thirteen days.

This is progress.

And it means the drug is WORKING.

The drug is an immunosuppressor. It is a TNF blocker. What does that mean? It means my immune system makes too much of a protein called TNF. This drug tells my body to stop making that protein. (I'm not a doctor, but I think that's what all this means!)

Since this drug is working, I now know that my illness is in fact genetic.

A discovery that relieves me and haunts me.

Because it means there are others in my family who could potentially have or develop this disease.

Not just my babies, who I chose to have, knowing there was a possibility that they could carry the gene for Crohn's.

But for my brothers.

And their babies, who they had before we ever knew I had Crohn's.

For all of my other family.

For all of them, we wait.

And we pray.

But the drug is working.

There is hope.

Hope.

~

Progress

2009-02-26T10:51:00.002-05:00

I guess I need to let you all know that I am doing better.

I've been enjoying some healthiness lately, and I've been so 'busy' I haven't been able to go to the blog that I reserve for complaining!

So the new treament, CIMZIA, is working!

Praise GOD! Praise GOD! Praise GOD!

I had a reaction to the injections (no big surprise there)....and it was a pretty awful 2 1/2 days....BUT!.....the medicine is working.

I still have diarrhea, and lack of bowel control, but I do not feel "SICK". Hard to explain. But I can tell the difference. Haven't had any fish hooks since then. Plus, I will always have diarrhea and lack of bowel control. I now have 'short gut syndrome', as a result of having a bunch of my guts removed. But hey.......God has granted me peace about it, and I am just so blessed at having another chance at 'life'.

So.......next Cimzia treatment is on Tuesday. I will be pre-loading with Benadryl, in the hopes of averting or minimizing a reaction.

For now......I'm back.

And I am oh so very grateful.

48 Hours

2009-02-10T09:34:00.003-05:00

In 48 hours...

I will begin receiving a new treatment.

Right now...

All I can think about is my mouth.

I have bloody, painful sores all over the inside of my mouth.

My mouth, my gums, my tongue, my throat.

They are related to the massacre of disease that is raging in my guts.

If you were to chew on a sandwich made of stainless steel and razor blades, you might come close to what I'm experiencing right now.

In 48 hours...

A new journey begins.

In 48 hours...

Fish Hooks

2009-02-02T08:13:00.002-05:00

So at 12:01 a.m., pumped up on adrenaline after watching over six hours of football (most of it played OVER and OVER and OVER again), I made these awesomely grandiose plans for my Monday.

All of the laundry would get done.

The huge box of 'paperwork' would get tackled, completed, and filed.

And I would scrapbook the rainy afternoon away.

And then the fish hooks got in the way.

6:30 a.m.

Diarrhea started.

Eight times before 8:00.

Fish hooks, you say?

That's the way I describe the pain.

Imagine that a fish hook is being pulled through your guts, all thirty feet of them. Every time you have a bowel movement. And then imagine that you have over ten bowel movements a day. What if you had fifty bowel movements a day?

Some people compare it to swallowing a saw.

Nope, it's fish hooks for me.

So my grandiose plans have been shot down.

I will settle for getting all the laundry done.

Perhaps next Monday I will put scrapbooking FIRST on my list.

Blues and Whites

2009-01-28T08:34:00.002-05:00

I just took and handful of blues and whites.

Rough night. Going on 9 hours now.

And we all know that I lean towards the crazy side.

But now I may have gone over the edge.

I think I saw Jesus' face in my bathroom doorknob.

Either I'm really high, really tired, or have spent far too much time on the toilet staring at the doorknob......

Or maybe it's God's way of saying He's with me.

When I feel better (someday), I'll take a picture and let the people decide.

The First Cut Is The Deepest

2009-01-27T06:47:00.003-05:00

I just awoke from a horrible, horrible, horrible dream.

Billy left me because of the Crohn's.

I am devastated.

Thinking she is 'helping' me, my mother steals the children.

I am trying to convince Billy to save our marriage.

He gets sick.

The doctors say he has contracted some sort of infection that has damaged his kidneys.

He will die in days without a transplant.

Of course, I cannot donate a kidney because of my Crohn's.

My mother leaves a voice mail message on my phone, that Jake has started to pee 'blue'.

After many failed attempts, I am finally able to reach her.

Apparently, my children have contracted the same infection, and both will die within days as well.

I demand that she return the children.

She refuses, saying that I just need to 'let it go'.

Somehow, I find the children in a hospital in Tampa.

They are dying.

Billy is dying.

No one cares.

Everyone has given up.

I refuse.

I decide to put the three of them together in a different hospital, and I go on a search for kidneys.

***Note to readers----- I kept waking up from this dream, and I forced myself back to sleep to solve it. I was not going to leave it unresolved. It was so important to me, and I think you'll see why if you just hang with me.***

I start hanging out in emergency rooms, looking for people who have lost their loved ones.

I continue to touch base with my dying family. Interestingly, the kids haven't realized how sick they are, and are taking things in stride with a great attitude. Billy, however, is losing his grip on the fight.

I find a facility with a kidney.

Billy is declared ineligble due to the way he is treated his body in the past.

Rather than choose which child to give the kidney to, Billy breaks into the facility and cuts the kidney up with a pair of scissors.

He is now in another facility, separate from the children, but is not incarcerated.

I continue my quest.

I network like mad.

I get on the phone.

The internet.

Facebook.

I am able to find friends from long ago who have contacts in the media, in Hollywood, and in politics.

Some know of others who needed organs for their children.

We find the kidneys.

Together.

And we live.

Today

2009-01-22T12:26:00.003-05:00

Today was a bad day.

I guess.

I was supposed to drive to the big city. Something I have done thousands upon thousands of time.

To see a doctor.

About having my tubes tied so that I can try yet another potentially deadly yet possibly life extending or life enhancing or life changing POISON.

But my body wouldn't let me go.

I got up.

I showered.

I felt like I was going to throw up.

I had an anxiety attack.

And then the diarrhea started.

And it didn't stop for two hours.

Even with Xanax.

And Lomotil.

So I gave up today.

I put my jammies back on.

And I turned my electric blanket on high.

And I went back to bed.

And four hours later, I feel better.

Physically.

The diarrhea has stopped.

For now.

I still feel nauseous.

I have never 'no called, no showed' for a doctor's appointment.

Never.

Until today.

Hopefully they'll forgive me.

Today, I really don't care.

Tomorrow, I might.