It came in the mail today...I kid you not. Well, at least the ENVELOPE in the picture came in the mail today...I (of course) added the "extras" to the pix in irreverent fashion...as only I can. LOLToo bad I hadn't received that envelope YESTERDAY when I was REFUSED my Tysabri infusion. Yep, you read that right. My HANDS keep me from receiving my Tysabri yesterday...well, my COMPLAINT about my hands and the extraordinarily irritating Dr. She Who Will Not Be Named did. I guess the envelope really doesn't say, "bless the hands", but instead, "bless the person who's hands"...must be some kind of God clause. I can hear my Maker now saying, "I don't DO specifics like hands...whaddaya want from me anyway? I blessed YOU, didn't I?!?"...sigh.
If you're wondering what in the hay I'm talking about right now, you'd best read the post right before this one about my mannequin hands (or, simply shut down the puter and step away from your screen...it can only go downhill from here!)...the plastic-coated, numb hands I awoke with on Monday morning with the "zapping" electrical impulses down my arms? Yeah, THOSE hands...the one's I'm gingerly typing with right now (thank God for spellcheck...there...I've said a prayer).
I stayed home from work on Monday because I "thought" I was beginning to come down with something...something cold/flu-ish-like that might render me unfit for my Tysabri infusion on Tuesday...and then there was the most unusual sensation in my hands. And while I'm thinking about it, thank you to ALL OF YOU who generously left me comments on the "mannequin hands" post regarding YOUR experiences with similar symptoms...it was/is very comforting and much appreciated. But I digress, as usual...
Sooooo...I stayed home from work on Monday in an attempt to "rest" up and strengthen my immune system for the on slot of an IMMUNOMODULATOR on Tuesday. When I awoke on Tuesday, my throat and stuffy head felt much improved, but my plastic hands remained...well...PLASTIC and numb. Simple things like running hot water for a shower had to be delicately tested with other body parts to insure I did not SCALD myself (trust me...when I did my dishes, my beet-red hands were worse for the wear due to far too hot water being used!)...my FEET were NOT happy being used as replacement tools for my hands. Thank God (there's that "prayer" again) I could/can still grasp with my hands, otherwise feeding time could have been most exotic (or just plain circus-freak-crazy bizarre, but I'd like to think "exotic").
I promptly went in to my infusion appointment yesterday with (I'll just call her Koko...she's there to keep watch out for me in case I happen to "miss" any attempts to medically KILL me!) my friend in tow and plunked down in the Crate & Barrel office of Dr. She Who Will Not Be Named. The infusion nurse entered and casually asked me if anything had changed since I was last there for Tysabri in April...I "casually" mentioned my recent problem with my hands...she casually left the office room without warning.
The next minion of Dr. SWWNBN to enter my room was the angelic ARNP...concern was about her face. More questions about my hands and then PIN POKES! Fortunately for me, I couldn't FEEL most of them, but I tried desperately with my eyes closed (drat her anyway!...no way to cheat on the test) to "guess" which end of the pin she was jabbing me with...after all, I still CAN feel pressure in my hands, just not pain or temperature on most of the surface of them. This is when Koko turned on me.
"Just tell her (ARNP) the truth and stop trying to GUESS what she's doing," fell out of Koko's mouth. Oh, the pain of betrayal! I HAD to open my eyes to GLARE at her, and so, I did.
As my eyelids flew open to send deadly daggers across the room at dear Koko, Dr. SWWNBN POKED her head in the door to shout orders...this "poke" I felt to my core. In a whirlwind of flurry, I was suddenly denied my Tysabri and told I had to get an urgent MRI of my cervical spine...like a surgical incision, Dr. SWWNBN cut into the conversation and immediately withdrew her knife and disappeared while I proceeded to metaphorically gush blood from my wound. Ouch.
Events that followed for the next several hours are a bit of a blur...I was dismissed from the office (actually I kind of blatantly left without saying "goodbye" while the angelic ARNP tracked me to the elevators and begged me to wait long enough to get my MRI order), sulked my way home, and waited for a 7:45PM (yes, that's pee em!) urgent MRI. I tried to argue my case in point at the elevator with the ARNP...my case being this: The only drug I've got left in the regimen of available MS drugs is being withheld from me because of a new symptom that I could have just as easily not mentioned and that NO MRI is going to tell the good doctor anymore than she already knows...I HAVE MS!!!!!! The sweet ARNP tried to calmly state a case for "infection" and "PML" and...I sharply countered all of the excuses, to which she HAD to eventually agree with me. I even used the, "I'm no doctor, I just play one on the Internet...but even I know blahty blahty blah".
I went for my 7:45Pee Em MRI, got my personal disk copy, and returned home to stare at the results. I could not even FIND my previous spinal lesion (which, I believe God answered my "prayer" and HEALED it!), and the only thing that screamed "that ain't right" was/are the bulging discs in my cervical spine...the same bulging, degenerative discs that have been there for 100 years (OK, I exaggerate the hundred years thing...but they HAVE been there at least since my first MRI in 1998!).
Now, before all y'all start commenting about my incompetent neurologist, let me fill you in on a tiny part of the story I've left out (left out to make myself look good and embellish the story...ahem...). She DID email me TWICE yesterday evening, telling me to call her immediately so we could "talk"...most likely to 'splain her Lucy-fied self...but I simply wasn't in the mood. And my moods DO rule! I was sorely disappointed in not getting my Tysabri and wallowing in my own fears...so much so, I couldn't be "bothered" with any conversation of explanation. And she DID call me early this morning (thank God I turn my phones off while I sleep...prayer answered AGAIN!) and left a message to inform me I NOW HAVE A DEGENERATIVE ARTHRITIS...per the radiologist that she also called early this morning to consult with. Oh, and I COULD get my Tysabri infusion today...at the hospital I DON'T like infusion center. Actually, I believe her EXACT words typed in a follow up email were "It’s your discs that are causing the numbness, so please come in for your tysabri today and stop being so f-ing stubborn." Yeah, that's a cut -n- paste directly from the email...ahem...
So, to make a long story even LONGER, I DID get my Tysabri infusion after all today. Unfortunately, I also DID find out I get to add yet another lovely disease to my list of genetic mutations...degenerative arthritis...if that really IS it's name/diagnosis! I'm still not convinced, based on the EXPERT'S comments (that would be all y'all in the comment section of this blog), that my mannequin hands are not simply due to MS. I guess, as with anything unholy and pertaining to Multiple Sclerosis, time will tell...sigh...
Now that I really LOOK at that letter/envelope I received today, I may have to put a "return to sender" on it and drop it back in the mail...after all, the back side printing is CLEARLY addressed/written to "Jesus" and there's no one living at my address by that name...
**Footnote: The author/blogger fully accepts responsibility for all irreverence in this post and the guarantee that said author will most likely smoke a turd in hell for the content written**
13 comments:
Oh dear. Arthritis has caused some 'screaming in the middle of the night pain' but it hasn't altered the sensation of touch and temperature. But MS has.
During my recent relapse it was rather disappointing to retrieve a can of soda from the fridge and to truly believe that it wasn't cold enough. It didn't matter that the 12-pack has been in the fridge for days. I couldn't feel that the can was cold at all - and you know that that just messed with my mouth which was reluctant to believe that the soda was cool as a cucumber.
And then, most of the time, I have no real sensations in my finger tips. Very disappointing indeed. Don't get me started on the pinprick test. I can sit there and say, "I know you are poking me but it doesn't phase me one bit. Maybe next time you should sharpen your safety pin first." When the doc finally hin ts a feeling spot it's like, "yeow!!! that's sharp. What are ya tryin' t'do...draw blood?"
So far the docs and I are blaming the MS for my being so insensitive. Other than that, I've got no excuse for being a dull dope on occasion. I'll keep trying to do better and maybe someday I'll think of something to say which isn't based upon discussing my own faults and complaints. MS is turning me into an insensitive bloke (wink,wink).
Insensitive bloke! I like that, Lisa :)
Glad to hear that you got over your "stubborness" (LOL -- they've got the wrong girl there) and were able to get your infusion. I would have been right at the elevator with you. PO'd.
I had mannequin hands much of last summer. Bummer for drawing up meds from glass vials, I tell ya. And like you, my feet hopped me right back out of many baths run more than a little on the warm side. I got my hair cut *really short* at that point because I kept clipping my fingers into the back or getting them stuck in hair bands...
My neuro tried to tell me that it "could be carpal tunnel, or stress".
But hey -- at least as Mutants, we're NOT NORMAL!! :)
Shawna up North
Oh, Linda, so much I could say, but won't---just this, the whole new disease/condition thing, yet ANOTHER MRI? Do you get frequent MRIer miles? YOU SHOULD! I...I...good thing you are not (add your agreement here) my sister/mother/lover/ because I would be...AAARRGGHHH
Linda,
to quote you:
Well, holy shit marie...
Something else to add to the mix. I guess the creators were wondering about your juggling skills.
At least your sense of humour isn't degenerating.....
S.
huge drag. mind if i join you for a turd in hell?
So is the moody, stubborn, uncooperative stuff an MS symptom? LOL Cause this is pretty much how something like this would go down with my husband (minus the part where he had any clue about the medical stuff). When he gets his tysabri the nurses leave the drip in his arm for the hour after because they are afraid he's going to just get up and leave cause he thinks it's ridiculous. And if they take a minute longer than an hour to remove it he will pull the IV out himself and once sprayed blood all over the table. Despite all this the nurses seem fond of him! LOL
Yep seems like maybe those are MS symptoms - I always though it was his Italian side that brought those things to the surface. :)
Glad you got the tysabri and hope that there is help for the mannequin hands.
Don't worry, I'll be with you in hell along with all my friends. We are gonna have a blast with no one around to tell us how bad we are.
The people who send their kids to the Jesus Camp have you on their hit list! And Dr SWWWMBM--you think she is stubborn too? Then help us! We still have the annual debate of trying to persuade Linda to invest in an air-conditioning unit ahead of us! lol
What?!! Linda, you don't have air conditioning? You crazy gal. Talk about summer torture, even if you live up north.
I like Diane's idea about getting frequent flier miles for all the MRI's. I'd sign up for that and then maybe I'd actually not mind too awful much going in that tube.
How funny - my first thought when you wrote that your dr. was sending you for an MRI was, "what's that going to tell them? That she has a lesion on her spinal cord? We already KNOW that!" Glad you pointed that out to them... (Cuz, um, MRIing the spinal cord to check for PML? THAT makes a ton of sense... heh.)
What I'd like to see are MRI specials: get two spinal cord scans and we'll do your brain for free while you're in there! Here's some more valium; enjoy! :) More valium; maybe that would make paying the $200/pop fees less irksome.
(Oh, and you need to get yourself one o' them portable air conditioners: best $500 I've ever spent. Seriously.)
Linda will be thought to be mentally deranged if she gets an air-conditioner. (Though it is expected to be in upper 80s tomorrow...for an hour or so.)In Seattle they carry umbrellas in the snow and sit in front of dusty fans during brief heat waves. Houses and apt. bldgs often have no basements, nor screens in windows. Took this Midwest gal YEARS to get over all this. (And I DID buy a car with air-conditioning and had screens MADE for my windows...but even I wouldn't get an air-conditioner. A bald man buying a comb.
Crud ... perhaps we can open a market for piece-meal blessings?
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