enough about those pansy drinks, let's get to the point. the cocktails i am talking about are the real deal- hard core, delicately mixed, extremely potent, and most certainly mind-altering blend of solumedrol (steroids) and saline, little white tablets of zofran that serve to calm the raging nausea, neon orange circles of prescription antihistamine (atarax) so the ever present itching will lower to a functional minimum, and the all-too-familiar clear stickers filled with higher strengths of pre-packaged morphine. if you're already shaking your head, then you're on the right course. to be honest, my memory of the past week comes back only in brief chunks and pieces of lucidity.
by the way, this is as good a time as any for a disclaimer: if you received a package or note from me over the past week, forgive any forays into completely imaginary people, events, and places. for example, i reread a letter to my brother, and i had written the following... "the dinner party was lovely, there were 8 place settings." (um, what the hell was i talking about? did i host a dinner party without even knowing it? did i attend wearing only a towel & flip flops? who knows!)
the best way to describe how the past week has been like, or felt, would be to steer your gaze into a broken kaleidoscope- now, those contraptions are already distorted enough, so imagine how confusing a picture a broken, fragmented device would yield... and sometimes i am just tired. so, so tired. and not the "lead in my joints, sand poured into my bones" type of tired that i refer to from time to time... no, this is utter exhaustion felt from exiting one battle just to enter another, from heading into war after war, strapping on a complete set of well-chinked armour just to walk through a pale toned lobby and eventually called into the waiting sterile white room, coated in cheap white paper and flimsy pea green drapes that serve as room dividers. it's exhausting, it's draining, it's... pointless.
but if i stop, the ball drops with me. who is going to pick it up? not my parents, who are so emotionally invested that they can't see past how badly their only daughter is hurting, how much she is missing, how different her life is now from how they had pictured it. not my mother, who is forced to be my caregiver for even the most mundane of tasks, and chauffeurs me to appointment after appointment. the only time to herself is from 6-7am at BU's fitness center, and i'm sure her thoughts linger on my deteriorating physical condition. certainly not my younger brother- he's never shown any interest or concern in my battle with MS, or about the disease in general. as much as i try to attribute his words and actions (or lack thereof) to be a mere trait of his personality, it doesn't sooth the burning hurt of his ignorance.
not my friends, many of which are a 2 -stop bus trip at the very least, most requiring a cross-country journey on a 757. none of them are here to observe this limbo version of hell minute by minute, hour by hour. but realistically, how involved can they be when they only see through a keyhole of my life? truthfully, there is no one i hate enough to give such an obligation. (hell, i don't even want the job.) yes, they faithfully read my blog and send me letters and packages bursting with stories from their jam packed lives... my eyes scan the familiar handwriting, my thoughts lingering on their jet-setting adventures, engagement parties, football games, career advancements, wedding plans, baby preparations, even the mundane gossip that used to perk my interest. i force myself to smile as my lips trace over their thoughts, swallowing hard, attempting to force down the bitter taste of envy and jealousy that threatens to ruin the moment. did i ever really exist in that world? sometimes it seems so far away that i am convinced it must have merely been a dream.
which brings us to the medical professionals immersed in my drama. the nurses most certainly will fumble the pass... the blank faces who robotically jot down your vitals like they're copying down last week's local high school sporting scores. ("excuse me ma'am, i think you missed that i am suddenly 15 pounds lighter than my last experience with your scale a few weeks ago?"... head nod, head nod... )but they just go through the motions of "updating" my chart, as silent as a mute. "yes my name is meggie m morgensen, and my birthday is 9/1/80, and no i'm not allergic to any medications..." (educational nugget #1: this is standard hospital protocol for patient identification. you know, so they don't take out your kidney instead of checking your cholesterol.) what's my pain level? oh just a 10 on a scale of 10, same as the last 3 appointments. (no reaction.) sure, we can go through my medication list- yes, yes, ummm.... yep still on that, yes, yes, ehhhh, i think that dosage is down to 2/night... yep, yep, sure is, yes, ahhhh, yes it's the same. that's about it!
so let's go over the team of doctors themselves... neurologists, PA's, rheumatologists , internists, physiatrists, physical therapists, gastroenterologists... supposedly my internist is the all-star quarterback that creates individualized plays used exclusively for me, but it's more common to find me featured as the next journal of medicine cover in an undiagnosed parallel universe of immune system disorder case studies. i'm hyped as the undiscovered talent in the 3rd string, used as "elevator chatter" and are among the handful of "interesting" case patients brought up at monthly department meetings. (educational nugget #2- you never want to be an "interesting" case... i think i've dispensed that nugget of wisdom before.) sometimes i feel like i exist only to be traded back and forth throughout the entire AMA league. i should be given an MVP card for god's sake... hell, i should be awarded an honorary phD behind my name.
well, we've exhausted all possibilities- it's official, the ball ends with me and me alone. that realization is lonely and terrifying. i don't want to go through this alone. there, i've said it, i've admitted my weakness, my #1 insecurity... that i will go through the next 50 years fighting this battle on a solo mission.
ever since we returned from the DC MS Walk, the swelling in my feet have gotten increasingly worse. the skin is so stretched, so thin, that it appears almost translucent, causing major problems when attempting to wear shoes, especially ones that require laces or straps. (as much as i love my leopard print slippers, they're not exactly social attire). there is folklore around the existence of an "MS Itch", a symptom which is quite unusual, and rarely seen, even in specialized MS clinics and neurology centers scattered across the country. to be honest, even i was clueless that this was a symptom of MS. i had never complained to a doctor about my episodes of relentless itching, mainly out of the fear i'd be laughed from one corner of the exam room to the billing counter.
i remember the first exacerbation of the symptom... i was itching constantly, everywhere. i'd take 2-3 showers a day, thinking it was the heat that was triggering the irritation. i changed my bedsheets almost daily- even bought $80 of new moisturizers and makeup in case there was an allergic reaction occurring with my skin. i was positive that i had the first case of bedbug infestation in the dc metro area (obviously i had been influenced by a timely 60 minutes episode.) in the end, i decided that my cats (indoor cats, i remind you, who have been inside their ENTIRE 4 years of life) had become infected with fleas, leading me to drop $100 at target, to buy every flea medication on the market that promised everything from sterilizing your entire living area to coating your animals in preemptive measures of protection.
of course this "infestation" turned out to be purely an internal one- the first exacerbation of the infamous "ms itch." my neuro nurse practitioner in particular is fascinated by my condition- she had never met a patient who had actually experienced the symptom, she had only heard of it vaguely at various conferences and message boards of websites. (that's me, bringing confirmation to all wacked out immune system dysfunction patients everywhere!) it's pretty miserable, to be completely honest, as it's hard to get any sort of relief from the feeling of ants crawling underneath your skin. i've used entire bottles of benedryl gel, draped myself in cold packs (look to the left <-- hot, i know!), and taken benedryl 'til i was high as a kite. of course, all of this internal hoopla has caused my pain levels to increase dramatically, completely unaffected by the increasing vicodin and percocet supplements. the trademark GI disturbances, esp my close friend nausea, have returned- a fact which isn't surprising when you think about the concept and context of pain itself. a nurse practitioner explained this to me once... when you're in massive amounts of pain, something that is hard to be observed from an outward, or 3rd party perspective, your body begins to convert the discomfort physically, and nausea is usually the number one outward symptom.
luckily the afore mentioned edema/infection had given me a slot in my internist's coveted schedule for last monday. i came with a huge stack of of dead trees containing research facts and alternative approaches to all of my symptoms, ready to bare it all and beg for her phD level care. however, after i had been taken through the winding hallways into the fluorescent lit exam room, the nurse left me with parting words of "Dr. IM2 will be in to see you shortly." wait a minute, who the hell is that? mom and i looked at each other- my reaction time is a bit delayed these days, but that comment had gotten my attention easily. (long story short- the scheduling office F'ed up. yep, that same old, tired "blame it on the receptionist" routine.)
dr. IM2 waltzes into the room (no introduction, mind you- and we had never met), talking a mile a minute with assurances that she is dr. weber's "partner" (exact words), her "right hand woman" (another direct quote) and that she had planned on becoming more "involved" with my care, especially for time sensitive appts like these when dr. weber was unavailable. i wasn't to worry, she has "complete authority" to make decisions on my treatment plans. (or at least that was how she phrased it. ) the next day, the pieces of the puzzle were made much more clearer. turns out, she isn't a doctor- she's a nurse practitioner. simmer down, simmer down... don't get me wrong- i have nothing against nurse practitioners, especially ones that have been so highly motivated to obtain a phD in their chosen field (and they can be quite helpful and accessible whereas getting in touch with your doctor requires an act of congress these days.)
but it would have been nice to have known up front who exactly she was and what role she could play in my care. the problem was that i felt completely mislead, totally betrayed, and on whole, taken advantage of. less than 12 hours before, this partner of hers had promised me the moon, the stars, and a little white picket fence. in fact, she had even gone so far as to compromise with me- bargained that if i made it through 1 week of increased morphine, she'd acquiesce by prescribing a 5-day solumedrol (1000mg prednisone, given via IV) to get me over this "little bump in the road." (i swear to god if i hear that phrase one more time i'm going to be forced to demonstrate, physically, that we are not dealing with a "bump" but a massive mountain of boulders. perhaps with some blunt force trauma- (by the way, that's educational nugget #3, a phrase i picked up from law & order.) the next morning, my internist has already emailed me contradicting dr. maani's parting words, and i felt (yet again) like 2 hours of my time, energy, and emotions had (yet again) been wasted.
i sat back to give some thought to all of the different treatments and therapies i have tried over the years. they are always administered with the placating phrase "let's just get you over this bump in the road...", and the afore-mentioned "bump" is blanketed with bowling-lane type bumpers of sublevel phrases... "be patient" and, of course, "stay positive." the thing is, most of those recommendations that have been brought to the table at one point or another, have come from my questions and adamant persistence. they're a direct output of my own research, my sought-after advice/counsel from other patients, my questioning of friends/family in the medical field, my attendance of disease-related conferences and speakers.
what's important to take into context is that i've always made it quite clear that i am NEVER tied to ANY of my own suggestions. in fact, i would prefer that the educated, credited, licensed docs make their own recs and treatment decisions. but due to a continual inaction, i feel like i have no choice but to forget ahead solo. my hands shaking, i spread the papers across my lap, my lips ready to perform the well-rehearsed pleas... would any of the following be options?
1. increase my morphine patch to 75 mcg/h to help curb the pain
2. (3) day boost of solumedrol (IV steroid infusion) to force my immune system to flip and work in my favor
3. spinal chord implant for the continuing pain
4. dieuretic/compression stockings for the edema
5. atarax, or another rx for the itching
6. deep brain stimulation for the relentless tremors (essential & orthostatic)
i finished my litany of requests and tried to wrap my trembling arms around my entire body to provide some support, the emotions literally streaming from my body- my shoulders haunched, my face pale, tears forming in the corners of my eyes. every position was uncomfortable, each tiny movement served as a reminder of the brutal discomfort the past few weeks had ravaged upon my body. the tears made good on their threat to overflow, and they began to fall in earnest. i laid down any sense of pride that remained, and bluntly pleaded with dr. IM1 to listen to me, to please help me, to make me a priority- not just a phenomenon.
usually the canned response to my suggestions involve a form of, "well, that's more of a last-resort type of approach." oh really? well then please, tell me what lies between here and there, in the endless stretch of vast complacency? (i do admit, the deep brain stimulation is a bit extreme, but should i really be limiting the options at this point?!) could that be doctor code to get around having to admit "...we really don't know what in the hell we're doing."? but would i prefer to hear that answer? would i prefer that these "gods" of modern medicine and cutting edge research are flat-out stumped by a case such as mine? is it that easy to make them give up? how would i really react if i heard the words, "we can't help you..." come from their mouths? on one hand it might be a relief, on another... well it might just reinforce the pervasive hopelessness. so who is to say which is the right choice.
but this is how dr. IM1 reacted. she got in my face, grabbed the sides of my arms, and looked straight into my tear-filled eyes. taking a deep breath, she said, "i am not going to leave you. i am not going to give up on you. you can say anything you want to me, and i won't get mad at you. you can be mad at me all you want, but i promise, i'm never going to stop being your doctor."
wow, right? and it wasn't an act- her eyes had filled with tears, too. there was that nagging voice in the back of my head whispering, "it's just another line, don't let your guard down, don't believe her...", but i wanted to believe her- i want to believe her now! isn't that what they teach us from preschool years on? you can always trust a doctor. if you're in trouble, look for a doctor, a policeman, or a fireman! (see, i was paying attention.) and then i began to feel it... amidst all confusion and physical chaos, a lingering weight began to lift gradually off my shoulders.
over the next 3 days, i was treated to first class steroid treatments in the internal medicine's clinical infusion room- a closet sized (but private) room complete with a flat screen tv, the new, mechanically-raised beds, and my favorite of all- the blood transfusion chairs that lean back like an old school recliner. (with my insomnia escalated to world record setting levels, that chair becomes my magic button to escape to the land of sleep.) before the IV team arrived to get a line in my arm, i was out. over the next 3 days, i got the best sleep during that hour of uninterrupted needle up my vein.
my case was handled by my favorite nurses, who are always thrilled when they get a patient that is younger than 80 (there are a lot of old people in PA!), and a wheelchair was always waiting for me as i stumbled into the main lobby (for an older gentleman wearing suspenders and highwaters, he was quite a big fan of my dangly earrings- weird, right?) my exit was planned like a broadway show- the yellow polo shirted volunteer would come to wheel me out to the pick up lane, where mom had hiked down the massive hill to reach the silver limo (otherwise known as my camry, carlisle, for those of you that aren't familiar with my nickname obsession.)
the strength of the steroids leaves you with a distinct metal taste that lingers in your mouth throughout the day, and more debilitating, a massive nausea that follows you around like your shadow. even though my state insurance refuses to pay for aloxi (an IV solution of strong anti nausea control that is given to cancer patients during chemo treatments), i am able to down zofran on a steady basis to curb the threats of vomit throughout the course of the day. another internal conflict is the fight between the hyperactive nerve cells (thanks to the solumedrol/steroids) and drowsy side effects of the atarax (the rx antihistamine to control the ms itch. )
it's now sunday, and without divulging too many personal details (come on, like i have any privacy people, you're reading my thoughts on the WORLD WIDE WEB!!)... sigh, sigh, SIGH. just take my word for it when i say the past 2 days have been emotionally stressful and physically draining. the highlight of the entire weekend was last night when dad fired up the grill (spring is officially here in central PA!) to make my favorite recipe of zucchini turkey burgers. he even topped it off with thinly sliced avocado- probably the first real meal i've had in over a week. (unfortunately it didn't come up as smoothly as it went down.)
in the meantime, i've been constantly on the verge of throwing up, or trying to ignore the hunger that haunts me everywhere. i've let phone calls go to voice mail, and took frequent naps that were passed in fitful, sweaty sleep of 2 hours at a time. i hallucinate, putting together words and actions that are completely unrelated, and have entire conversations in my head that never make it to my lips. most of this can be blamed on last week's cocktail combo. the standard steroid treatment for an MS exacerbation is 5 days of 1,000mg prednison IV, followed by oral prednisone tablets that taper down and eventually off- 500 mg/day, 250 mg/day, 100 mg/day, 50 mg/day... you get the pattern, i'm sure. i usually follow doctors' orders to the T (note, capital T at that), but after a standout disasterous mental episode stemming from the oral steroids, i have sworn off the 2nd part of the regimine. i'm damn stubborn about that decision, but I have a good reason why...
rewind 2 or 3 years. i had just finished another 5-day relapse cocktail, and was 1 day (4 tabs) into the oral tapers... one second i'm crying hysterically, a few short minutes later, i'm stoic or over the top bitchy to any comment within my peripheal audio realm (is that a real phrase??) i remember being on the phone with my mother, and saying, plain as day, "mom, i don't think i should go up on the roof today. i don't want to jump off." ok, hold the freakin' phone. where did that come from? it totally shocked me (and probably scared the living daylights out of my mother.) i wasn't even depressed, and suddenly i'm borderline suicidal??!!
besides, i loved port royal's rooftop- it was one of my favorite ways to escape a shitty day by grabbing a book, pouring a glass of pinot grigio, and throwing my well-worn purple blanket over my shoulder as i pressed 17 in the elevator shaft. i'd settle into one of the infamously uncomfortable patio chairs that were leftover from the rooftop pool of the '90s. the hours would pass easily into late evening and there i'd sit, still hypnotized by the tiny sailboats circling the buoys and the silver airplanes coasting onto the landing strip at DCA. there was no way i was going to ruin my favorite past time by jumping off the building. so that was the end of my oral taper participation.
but simply refusing the oral taper has its drawbacks too. if you don't manipulate your body into sloooooowly coming off the high concentration of steroids, you will experience withdrawal (think your basic textbook definition, or dramatization on law & order or baywatch. <-- just wanted to see if you were paying attention.) the effects can run the gammut of discomfort (weakness, dry mouth, nausea, etc.) but almost always includes a few days of intense vertigo, slightly reminiscent of those 2am post bar nights when the ceiling refuses to stop turning... but i'll take some dizziness over suicide and psychosis any day- wouldn't you?
so grab your friends and chime in for a loud, forceful toast (with real cocktails, that's for sure!)... here's to meg, in the hopes that she turns a corner very soon, and that she blasts that infamous "bump in the road" with a kilo of the strongest dynomite on the black market. and we will end this session with a timely reading from a very wise greek philosopher...
“Be patient and tough; someday this pain will be useful to you.” Aristotle (384-322 BC)
remember, you can view these postings directly on kit katchat's blog; http://meggerv2.blogspot.com/
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