Kryptonite in the form of Galoshes

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.

~

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

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!):

1. The guts are better.
2. I am achieving a 'healthy' weight loss.
3. 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.
4. 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.
5. Magical, angelic nurse of the millennium Sue found a vein!  WHOO HOOOOOOO!
6. 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.
7. 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..
8. Minor reaction was observed, noted, and medicated.  I lived another reaction to endure another reaction in 28 days.  Small victory, but a victory nonetheless.
9. 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!
10. Oh!  I did NOT poop myself today!  Yay me!
11. 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

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

~

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

~
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

~


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

~

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

~

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

~


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

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

~

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

~

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

~

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.

~