Too 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**