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

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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.

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