On Tuesday, I DID get my third TYSABRI infusion. I even started a blog post about the event, but decided it ended up being too boring for even ME to suffer through reading. Here's an excerpt, however:
I went in for my third TYSABRI infusion today at the office of Dr. She Who Will Not Be Named. I was prepared…I had not forgotten last month’s infusion debacle when I casually mentioned my hands had developed a numbness in them. You remember? The day my Tysabri was NOT infused in May and I was sent for an urgent MRI (all because I had foolishly mentioned a symptom onset/change?), only to later be told I now had Degenerative Arthritis in my neck (and had to reschedule my infusion for the following inconvenient day?). Ah, yes…the bitter taste of the experience still lingers in my craw.
I was prepared with devout determination to be infused…I painted on my best poker face before my appointment and rehearsed my non-informative lines. I smiled when I thought it was appropriate, “chatted” when necessary, and tried to limit my typical rambling prose to simple, nondescript language. Everyone at Dr. SWWNBN’s office was being placed on a “need to know” basis…and frankly, I just didn’t think they NEEDED TO KNOW!
They didn’t *need to know* the fact my hands have progressively become more and more numb…my plastic mannequin hands…and I had now taken to burning myself on hot appliances because I simply can’t feel the heat radiating through my flesh (only the infusion nurse asked about the rather large scabbed area on my left thumb…I avoided response with a “hey look…a chicken!” tactic). They didn’t *need to know* my handwriting has become illegible (and who really WANTS to read anything I write besides my signature on a check anyway?!?). They didn’t *need to know* the pain in my neck and shoulders continues to disturb my sleep EVERY night…every frickin’ 2-3 hours…and it hurts worse to lie down than to remain upright. They didn’t *need to know* my neck becomes painfully stiff as a board at work…to the point I can no longer sit at my computer and type clinical notes for more than 20 minutes at a time. They didn’t *need to know* the massive amounts of Ibuprofen I had been consuming just to GET 3 hours of quality sleep feels like it has been burning a hole through my stomach…I wake up feeling like “Puff The Magic Dragon”, as if I am blowing flames from my exhaust! They didn’t *need to know* I am still balancing on the fence regarding my intuitive belief “something” else is wrong besides Degenerative Arthritis…since I didn’t have these symptoms BEFORE I went off Novantrone and started Tysabri…and I remain leaning toward stopping all MS treatments. Nope. They just didn’t *NEED TO KNOW*.
And so it went...Dr. SWWNBN *accused* me of not talking to her when my carefully placed words strategically left my mouth. It appears I am regarded as a rather "loud mouthed patient" in the office, so my change in demeanor was noted. In MY profession, it is called being "guarded", and I will admit I was WELL defended! LOL
Tysabri in, strange side effects out. By the middle of the night early Wednesday morning, my head once again felt as though it might compress down into my chest, obliterating my neck completely. My joints stoked the smoldering fires burning deep within them and the pain was radiating around my bones and long muscles. Can you say, "No sleep, children?!?"
I finally pried myself out of bed and fired off an email to the gods, requesting suggestions for something...ANYTHING that might give me some relief from the systemic pain. This is the email that floated back into my "in box":
"Tramadol is non-narcotic but it can give people a buzz (it’s not totally benign) might be an alternative. I’m assuming Tylenol doesn’t cut it? How long is it lasting? Ice packs alternating with heating pack (20 minutes each) help at all? A muscle relaxant would be another option to try. Usually the headache gets better after the first few doses, if that’s any comfort."
I highlight the last line of the email because...well...it ANNOYED me more than anything! But I held my tongue and responded with this: Thanks, but "no", it isn't much comfort to hear "the headache gets better after the first few doses". :-) It's not the headache that is causing me the greatest distress. And on it goes.
I loaded myself up on gastric-burning Ibuprofen on Wednesday and headed out to my PT appointment in the afternoon. Suffice it to say, by Wednesday afternoon, I felt myself being sucked into a strange vortex of pain/discomfort and emotional distress. Madam Z, my physical therapist, DID get me laughing over her personal antics...until she strapped me into the neck stretching traction device, set the timer, and left the room. I was all alone with myself during the next excruciating minutes...what seemed like an eternity of time.
While in the traction machine, the headband strap that is used to hold one's head firmly in place came loose...the velcro edges that normally cling to each other suddenly had a parting of ways and my head was free to roam in the machine...really NOT a good thing. And me, rather than wanting to pull the emergency cord and try to get someone running into the room, decided to wait for the 10 second release of the machine and see if I couldn't just strap my head back down on my own. BIG MISTAKE.
I've never been one to have great "timing" (either with joke lines or cooking!)...as I cranked my neck to the side in the machine to try to look above my head, I "lingered" just a second too long. The traction machine, in its programmed wisdom, decided my 10 seconds of release were over, and began its torturous grind to pull my head off my shoulders...with my neck in the contraption SIDEWAYS. My neck was now wretched to the right in a most unholy position.
Clearly my fault and not wanting to admit my guilt (and pride), I was able to free my neck from the device and wait for the session to tick down on the timer, but not before my neck was rendered incapable of TURNING to the left....Madam Z returned with a look of concern as I sat with my legs dangling over the edge of the gurney and rubbing my neck. I decided it was best to say nothing and just leave...which I did...and sat in my car crying in pain and disappointment. Thus, producing Wednesday's grief-filled post.
I returned to my home and contemplated my options (and NO, the options were NOT gun, rope, or pills!). I have grown worse over the past 2 months with numbness and weakness in my hands...complicated by what my inner truth believes is a systemic side effect from the Tysabri. And at that moment, I realized I had also foolishly WORSENED my own condition because I was too prideful to call for help when my fat head escaped the PT machine! Maybe I was being "too prideful" about a LOT of things?
On Thursday (after little to no sleep and my neck fully stiff as concrete), I tucked my tail between my legs, lowered my valiant head, and fired off a one line email to Dr. SWWNBN: I'll go...please refer me to a neurosurgeon you know and trust. I felt myself once again caving into the Medical Establishment because I could find no other viable option...I was worn down.
Referral to the surgeon was quick and succinct...I was emailed a name and phone number to call. I waited until Friday to make the dreaded call so I could *consult* with my personal "insulting nurse" (**description stolen from Saint EB...it's how she refers to ME and my medical advice!**)...my dear friend, who I have mentioned in earlier posts, that was RETIRING on Friday the 13th. What better way to say, "You cannot escape me even in retirement" than by begging her to accompany me to a neurosurgeon's consultation scheduled ON MY FRIGGIN' BIRTHDAY!!! Yes, it's true...the first AVAILABLE appointment with Dr. Slice -N- Dice is in July...sigh. I really can't imagine what Karmic debt I must be paying off to have earned THIS one.
Friday involved much sadness and tears as Ms. Merrinuts said her final good-byes to full time employment and sailed her ship into the sea of retirement. I fortunately, was kept very busy at work during the day, leaving me little time to choke up and blubber. But suffice it to say, I am happy for my dear friend, but completely and utterly self-centered-ly SAD...for ME...for MY loss...because the world DOES revolve around Moi. (NOT LOL).
So now I'm "hopped up" on Tramadol...a synthetic opioid...and I have to honestly say it IS relieving some of my neck pain and discomfort. I managed to actually SLEEP ALMOST 5 HOURS WITHOUT WAKING UP last night...a new world record for me since beginning my 2-3 hour nightly cat naps several weeks ago. Maybe Dr. SWWNBN DOES know one or two things of benefit?!?
But, I'm still holding my breath until my July appointment with Dr. Slice -n- Dice...and, if I successfully hold my breath long enough, I'm not going to NEED a neurosurgeon! Maybe a cardiologist, but not a neuro-doc...