Tuesday, July 12, 2011

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.


Wednesday, July 6, 2011


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..........


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.