On The Lighter Side

given the recent emotional rollercoaster ride, i thought i'd highlight how Lady Gwendolyn & Madeline are helping me cope with all the drama. (which is mainly in the form of moral support.) introducing,....

A Day in the Life of the Furry & Fabulous

9am- wakeup, yawwwwn

10:30am- nap time!

12noon- ahhhhhhhh, get comfy

1:15pm- ewww, your ears are like, totally dirty

3pm- dude, give a sister some space

4:25- wait, where are my paws?

5pm- nap time!

6:10pm- warm up in the patch of sunlight

7:45- snuggle with meg for a law & order marathon

famous last words

"i just want to talk. no more tests, no more MRIs. just talk- that's all."

i don't think i have ever heard more famous last words in my 27 years of being on this planet. (well, 24 years if you don't count the "ma ma, da da" phase of a toddler.) the source of this is a neurologist, dr. h-something (honest, i can't pronounce his last name, i'm not being dismissive. hence, i call him dr. Carl) at geisinger's MS clinic. it should ring a bell- i'm frequently at the clinic and have referred to it in earlier postings. dr. Carl became my doctor almost out of default- one of those chain of events things. here are those supporting details...

when i moved to lewisburg back in march, we set about trying to find a neurologist who specialized in ms. we found out that geisinger had an MS clinic, so assuming they'd have an MS neurologist, we made an appt. my first doctor there was an older gentleman who has been in the department almost all of his practicing years. unfortunately, he didn't prescribe (nor approve of) Tysabri as treatment, and his sub-specialty was Parkinson's and strokes. apparently the clinic's longtime MS neuro had retired recently, and they were still recruiting for the position.

therefore, i wound up in harrisburg, with an MS neuro that not only prescribed Tysabri, but also had MS herself. it was a good enough fit, but after a few months of the lewisburg to harrisburg commute for the 3-4 hour treatment became way too taxing for my physical condition. if you read this post often, you will remember that it was around this time the ms clinic @ geisinger was lobbying for using Tysabri at its infusion center. long story short, i came on board as patient #1, and the prescribing doctor was the newbie, dr. Carl. i asked at least twice if this doctor was going to give me an exam, but was told he wound eventually, and everything was good to go.

when i was taken off Tysabri, dr. Carl wanted to rule out any additional conditions that were making my MS worse, especially Lyme's disease. (apparently blood tests aren't always reliable or conclusive for Lyme's, so the spinal fluid is used as a more reliable marker.) i don't need to go into further details on how horrific the spinal tap experience was, but all in all, the tests came back negative for Lyme's, and no MS specific proteins were was present. this isn't unusual- it is a diagnositc procedure, but presence of the fluid in question can't be used definitively to confirm or exclude MS. it is usually done in cases where diagnosis is unusually difficult and evasive. like i mentioned in the beginning of our "supporting details" section, how i wound up in dr. Carl's care was solely by paperwork dictation.

fast forward to today. while i am "drying out" from Tysabri, i am taking monthly "pulse" treatments of Solu-Medrol to help control my symptoms and help to keep me moving. (for lack of a better phrase.) today was the magic day. as i was led back to "my room" (the nurse affectionately phrased it that), she told me that dr. Carl would be stopping by, and would like to have a word. i had been expecting this, but not today. i wasn't mentally prepared, i was tired from the long weekend and already on edge from a blasting migraine. he came in while we were waiting for the IV team (my veins can be tricky), and asked the usual bullshit questions that some doctors seem to mistake for casual conversation. (key word is most dr. dilling!)

"how are you guys today? holding up okay?" i could have answered with "funny you asked, i was abducted by aliens who performed a partial lobotomy with no sedating medication." and he would have continued with the next question. but get real- i'm an MS patient coming into his office for a course of cortisteroids to be blasted intravaenously into my body. clearly i'm not feeling my best. the conversation went downhill from there, which leads me back to the title of this posting. dr. Carl explained that he was not convinced of MS presence, due to the spinal tap results, and wants to sit down with me for a couple hours to go through his "method" of diagnosis. he then explained that he was fortunate enough to train with the best neurologists in the world, and the process is a tried and true practice that many neuros use.

my whole body began to go on "alert" mode. my mind was racing, my heart was pounding... to be honest, i don't know which was bubbling to the surface- my anger or my hurt feelings. not again, not again. i've spent years fighting for myself, fighting literally for my life to resemble some sort of normalcy. and just when i feel safe with a doctor or nurse who i think is going to help me, the rug is pulled out from beneath me. those years swirled in my head- all the disappointment, pain, disbelief, frustration, denial, sacrifices.

there have been so many doctors to come and go before him, and they were all as different as they could be from one another. but they had one thing in common- there was no doubt that i have MS. don't get me wrong- each may have varied on how severe or mild they concurred my case was, but there was no doubt of its presence. i should know, in addition to my own denial, i had to also calm the fears and address the denial of my parents. between the whole family, i have had at least 5 "second opinions."

the reason there are so many of these doctors isn't that i'm schizophrenic, it is that an MS diagnosis can be tricky. there's not a simple blood test, or a random CT scan, sometimes other conditions can even mimic or hide aspects of the disease. the game is best (and most reliably) played by ruling out the encyclopedia britannica of other possibilities- sort of like that stupid chair game you played in preschool. wait for it, wait for it.... musical chairs, that's it! when the music stops everyone makes a mad dash to a tiny seat. i hated that game- after so many elbows in the face and shoves to the side, i frankly didn't give a damn if my ass was on a chair or on the carpet.

in addition, each player is going to have their own "game day" mentalities- some are aggressive with cortisteroid treatments, other prefer the disease modifying injections. some suggest physical and occupational therapy, others push towards an alternative/holistic approach. but regardless, a combination of the following lead you to an MS diagnosis:

- your medical history (esp. evidence of past signs and symptoms)
- a thorough neurological exam (this part seems stuck in the 50's- you squeeze his fingers, follow the pencil, are poked by safety pins all over your body, walk on your tip toes, bend over and touch your toes, put little pegs back in their appropriate wooden holes, have a light shined in your eye... need i go on?)
- MRIs (magnetic resonance imaging; think being pushed into a tiny tunnel- a claustrophobic's worst nightmare)
- evoked potentials (studies that measure the response of your CNS to specific stimulation- )

long story short, i don't troll the country looking for doctors who necessarily agree with my outlook- it's a combination of being referred to doctors that have more expertise in dealing with the worst of my specific symptoms AND establishing a confidential rapport, feeling like that doctor is listening to my concerns. so far, the only interaction dr. Carl has had with me is 20 minutes during a spinal tap, and we know what a disaster that was. actually, that is a prime example- if this doctor knew me at all, he would have known that the test was not only unnecessary, but cruel to put me through.

he was staring at me, nodding uncomfortably to make up for my lack of response. the room had become 30 degrees, and all the air seemed to have been sucked out of my lungs. i was trying desperately not to cry, thank god i had my celebrity sunglasses on. the light is still torturing me, altho recent eyedrops from dr. beautiful are helping. (again, another thing dr. Carl doesn't know about his patient- the her scarring on the optic nerve from a past case of optic neuritis. ) i managed to stammer out that moving to a different state shouldn't require a completely new confirmation of diagnosis, does he have a habit of doing this to all his new patients?

dr. carl: "while you aren't new to this, you are new to me, and i need to know everything about your condition- both past and present. i need to be completely sure that you have MS before i introduce any medication that has potentially harmful and serious side effects."

tears were starting to prick the insides of my eyeball, i could almost feel the tear slice through my cornea. (kim- do tears go through your cornea?) in a small voice, my confidence shrinking by the second, i reminded him that he has copies of all my records. they should show all of the tests that had been run, and all of the results that point back to MS. if he is looking for a magic cure, or some mystery diagnosis, he isn't going to find it. it's just not fair or necessary to ask me to go through all of this again. i can't do it anymore. i think it is only fair that he actually reads those records before he comes to me with assumptions.

dr. carl: "like i said, i have my own methods that were learned by world renowned ms specialists, and all i'm asking is for 2 hours in a few weeks to go over all of those details."

[note he did not say he would or has read the records.] with the last of my strength, i stated again the doctors who have confirmed the diagnosis- an original neuro that diagnosed the condition, 2 docs @ NIH who confirmed 2nd opinions, a clinical study performed @ NIH over a 3 month period, a nationally known neuro in VA who treated me over 2 years, and a neuro at georgetown- and those are just the ones that come to mind!! with my lip trembling and my hands twisting the cuffs of my sweater into sweaty knots, i just nodded defeatedly. i'm not sure if i can go through this again, i told him honestly. i shouldn't have to.

dr. carl: "well, i'll let you guys hash it over, and if you want to schedule an appt to move forward, just call and let us know your decision. i just want to talk. no more tests, no more MRIs. just talk- that's all."

he got up and left the room, and i turned to face the wall. the tears were flowing quickly now, and i didn't want to give that man the satisfaction of seeing them. since when do doctors not want to perform tests- that statement was practically a joke. i felt utterly defeated. where now? what now? i'm so tired- so, so tired. i cried and cried on the phone to elle this afternoon- i think all the tears i struggled to hold in throughout the SoluMedrol IV burst out. i don't have any fight left in me. this is my life- i'm not just some lab rat who displays unusual results and might make an interesting study to put his name on the neurological map. but you know what? maybe it's not even about me anymore. maybe my life has become an evergrowing charts of lab results, CT scans, MRIs, Xrays, evaluation notes, eye charts, and brain waves that live in a 3 inch stack in the corner of a medical storage facility.

my face time with dr. Carl was at the most 10 minutes. it's kind of hard to imagine how much could happen in 10 minutes. but in only 10 minutes, he destroyed years worth of self confidence and assertion i have had to learn to survive this hell. in only 10 minutes, he placed seeds of doubt in the very existence of challenges i face every single day. in only 10 minutes, my mother was given yet another false hope in a simple answer, a magic cure. in only 10 minutes, he eroded the acceptance of this disease that had taken hours of tearful conversations with the best of friends, not to mention countless dollars in therapy, to achieve.

but worst of all, in only 10 minutes i was back in a cold, sterile doctor's office in VA- a naive 24-year-old trying unsuccessfully to wrap the thin patient robe tightly around herself, shivering against the chill of the steel exam table, fretting over roommate squabbles and a shallow breakup while she waited for a neurologist to reveal a life changing diagnosis on a lightbox.

and therein lies the curse...

there are 2 things i want to ramble about today. one is the recent spinal tap (LP) and the other is a general sharing of where my head is at these days.

post LP hasn't gone so well. the evil headaches have ceased, which means i was able to pull myself up off from the horizontal position i was glued to for days on end. (and no, get your heads out of the gutter- not that kind of horizontal position.) the lower back pain that was radiating up my spine and down my legs have morphed into a general ache and overall soreness. and where am i? well, i am exhausted beyond explanation. i spent the majority of monday in bed- moving from my bed to my mother's bed, and back again. the girls (lady G and madeline) have followed me from bed to bed, sprawling in comfort like the loyal ladies in waiting they are. it has taken effort to even sit up in bed to drink coffee, or to walk to my pill container and take my medicine.

i'm in a fog. i literally feel like i am walking underneath water- that is how slow motion things life feels for me right now. my body is throbbing in slow, constant aches. everything is taking so much effort...after the spinal tap, i knew that it would take some time for my body to readjust- the same thing happened with the colonoscopy. my body needed 2 weeks to get back to a normal pace. my body doesn't react like normal bodies when procedures are done- i don't have the resources needed to get me back to speed. i predicted that the LP would require an additional week just to recover from the week before- so that is what i am in at the moment.

part of the moment is that am angry with my doctors. they should have weighed the benefits of this test against the possible side effects on my body. and if they did that, they sure didn't do it in front of me. so, yes, i am angry with them- they should have known that it would take me 2 weeks to recover from this simple procedure, and was it worth it? not to me.

so here is the part where i share the contents of my head. i'm definitely struggling with something. and here lies the curse... how am i to plan my life, when i have no control over my life? this applies to planning tomorrow, or planning next weekend, or planning next year. i have no idea what each day is going to bring. will i be able to get out of bed? will i have the energy to correspond with friends? will i be able to accompany my mom to a doctor's appointment? will i be able to visit one of my best friends in november? what is the point of planning anything when i have no idea if i will be able to do any of it? so, what do i have to look forward to? what joy does each day bring me. these are all the things swirling around my head.

for example, let's say that i had managed to land a part time job that started last week. i go to work on Monday, everything is fine. the next day i have a spinal tap, and i have to call in sick for the consecutive 2 weeks. ms. morgensen? you're fired. i mean, seriously, let's be honest here. what kind of job is going to allow that breadth of flexibility? as my mother says, i am not always going to be getting a spinal tap. but, it will always be something. i consider myself lucky that i know my body so well. and because i know it so well- i know there will always be something.

i think it is very difficult to be on the outside of my life looking in. my friends can attest to that. you have to know me quite well to understand the inner workings and the inner struggles just to pull myself together to attend a wedding, or go to the movies. i speak of the post LP issues above as just a minor example of how difficult it is to create a life for myself. sometimes i feel like scoffing at the ideas of making plans- due to circumstances out of my control, i will have to break them, or cancel them, or reschedule countless times. i think back on my old life of plans, schedules and order. i yearn for that just momentarily, b/c i know that isn't my life anymore. i can't waste my energy playing the game of "i wish...."

tap dancing

i scored front row seats this week to a tap performance orchestrated by the new ms doctor at geisinger's neuroscience/ms clinic. no, he's not double boarded in neuro and ballroom dancing. (i wish, the event would have been much more pleasant.) the tap performance i am referring to is the one and only... spinal tap! ah yes, the illustrious lumbar puncture itself, a name which strikes fear in the hearts of all men (and women!) and chills down the back of your spine. literally.

you might be wondering "why did meg have to get a spinal tap? aren't we past the diagnostic phase?"- in fact, part of me wonders the same thing. besides a desire to torture me, the doctors wanted to rule out any additional players in the ring- ie Lyme disease (there is also a blood test that is more commonly done) and a jillion other infections or neurological conditions. these are detected by analyzing the fluid that circulates around your brain and spinal cord (doctor speak acronym=CSF.) you don't get the report back on the spot. the tubes are taken to the laboratory, where they play around on those little shaking machines and spit out random numbers. magically they turn into a results sheet and you get a nondescript piece of paper in the mail.

at first i scoffed at the order, but my internist reassured me that the team is only looking out for my best interest. patients with chronic diseases sometimes get pigeonholed into one exclusive diagnosis, overlooking other serious, and sometimes life-threatening, conditions. (when she put it this way, i backed off.) but i was quite nervous about the LP (doctor speak for spinal tap). mainly because the last time i had one performed was my senior year of college, when i wound up in the ER from a piercing headache that was totally debilitating. all i remember was that an incredibly hot resident was subjecting me to the most excruciating pain of my entire life. (my roommate sandy was there for moral support, but she wasn't much of a comfort during the procedure- she was too focused on His Hotness. gee thanks slam!) in the end, they determined i either had aseptic meningitis or a strain of West Nile virus (which elle eagerly shared with our entire poli sci small group.)

but this time around there was not a hot resident in sight. instead, i was stuck in a dollhouse sized room (maybe 6'x10'?) that was at least 80 degrees, with a doctor i had only met once before. i can't even pronounce his last name! instead, i just call him "dr. carl". my blood pressure was 138 over 85- it's never that high. i was biting my lip like a madwoman (a bad habit of mine when i'm nervous) and twisting my hands continually. even mom ditched me! she didn't want to have to watch the huge needle, or see me be hurt, so she scooted out to the waiting room. (it was actually a good move, considering she wouldn't have been able to fit once the doc and nurse arrived!)

dr. carl did a great job of explaining everything- "first i'm putting XYZ on your back- it will be cold." and "i'm just feeling around for the precise spot on your spine." the nurse assigned to the room was a woman who has treated me before, tammy, and we've bonded over her son who is currently in Iraq during previous visits. she had to keep reminding me to breathe, and gave me mini pep talks throughout the procedure. "you're doing such a great job meggie!" and "almost done sweetie, just a little bit longer." (i felt like i was 10 years old- but i have to admit, it worked!)

regarding post procedure "rules", dr. carl stressed the importance of laying flat on my back as much as possible and advised against picking up any heavy items. he also explained the possibility of experiencing a few side effects, most common of which is a persistent headache (1 in 4 patients.) if this occurred, he recommending drinking caffeine as much as possible (you don't have to tell me twice!) the discomfort should not last more than 5 days, but if it does, they would perform a blood patch for relief.

so here's what went down. i was sitting on the edge of the exam table, facing the wall, with tammy (nurse) in front of me, and dr. carl (neurologist) behind me. i had to bed over, towards my knees, with my head under tammy's armpit and her hands holding down my knees. this position is so that she maintains a firm grip on me if i jump or jerk from the pain. also, it helps keep me in the proper position, so that dr. carl can keep the needle straight as the fluid drains out. back to the procedure. dr. carl felt around my back and around my hips to locate my lower vertebrae and the bones in the back of my pelvis. (the needle has to be placed in a specific area, the space surrounding my spinal nerves- the picture helps explain this.)

he found the magic spot, and cleaned the area surrounding it with a super cold liquid- it gave me the chills. once my back was prepped, he inserted a needle filled with numbing agent (i think this was lidocaine?) into the area where the fluid was to be drawn from. note- this was the most painful aspect of the procedure. it felt like 25 bees were stinging me simultaneously- all on the same spot! i immediately gasped and jerked, and could feel tammy shoving my shoulders back down towards my knees. once the drug did its numbing duty, a hollow needle was inserted into that same spot. although i was numb, and did not feel any pain in the typical sense, i felt a large weight of pressure. (since the needle has to be placed in that one specific spot, the doctor has to move it in and out several times to locate the opening. this movement is what is creating the pressure.) it was very uncomfortable, and i kept biting my lip and clenching my teeth, trying not to think about it. poor tammy, i think my fingernails were digging into her waist. because the needle is hollow, it provided a "pipe" for the fluid to be collected, and drained into the 4 tubes. after the 4th tube was filled (longest 7 minutes of my life), dr. carl removed the needle. and that was it!!

tammy helped me to lay flat on my back, and hooked me up with a pillow and blanket. then she was off to deliver the fluid to the lab, and fetch that promised diet coke! mom snuck back in, relieved of her worrying duty, and i filled her in on the gory details. i had to wait an hour before i could leave, just for basic observation. during this time, the resident vampire (aka phlebotomist) stopped by to suck more fluids out of me- he was after my blood, demanding another 4 tubes to be tested alongside my spinal fluid in the lab! his name was either bryan or bobby, and he has a 3 month contract as a traveling phlebotomist. this gig sounds like an ideal job- you get to travel to various parts of the country (basically whoever has the opening), with all expenses paid by the hospital (furnished apartment, meals, etc.). not to mention a higher salary since you are always on the go. since you are only there for 3 months, you don't have time or reason to put down roots- think of all the money you'd save from getting out of baby showers and weddings! anyway, he was super chatty, and quite skilled with the needle. finally, my hour was up, and i was free to go.

looking back, the anxiety and stress that preceded the tap was WAY worse than the tap itself. i swear, scouts honor. i mean, it's not the most enjoyable way to spend a sunny afternoon. i'd rather be drinking margaritas with k8 at mexicali blues and critiquing fashion faux pas by the snooty girls of northern va. but it's all over within 10 minutes- and you get to drink TWO diet cokes (or coke, if you prefer those sugary additives) afterwards.

but 2 days out, that's another story. don't worry, i don't think this is typical, but i'm not doing so hot. i was the 1 out of 4 to get stuck with the headaches- and let me tell you, these are wicked headaches. they are similar to migraines, but much sharper around the edges. i know dr. carl said to drink caffeine, but i can't drink that much coffee or soda in one day. i'm getting a bit nauseous just thinking about it! but to make matters worse, i'm also dealing with extreme pain in my lower back, surrounding the area of the fluid drainage. the pain was so intense last night, that i started screaming from the sharp stabbings and shooting pains that occurred when i attempted to walk to the bathroom. i've been alternating ice packs for heating pads throughout the day, and laying down as much as possible, but it just seems to keep the pain stable.

the intensity and persistence of the both the headaches and back pain prompted me to email my internist and MS nurse practitioner- both of whom ordered me to be seen in the ER for evaluation. who in the hell wants to go to the ER to be treated? and even worse, who wants to go to the ER at 6 in the evening, when everyone is doing their shift change and all the daytime docs have clocked out? no. way. i then called marylee, who as everyone knows, is our junior M.D.- but she echoed their advice, and sent me on my way to the ER! so mom and dad, being the troopers they always are, loaded up the car and drove me to danville (all of 15 miles away)... again.

long story short, there is not an infection at this time. my body is just in a very sensitive state, given my many neurological issues, and will take more time to heal from any procedure. i was given more percocet (like i need more narcotics) and sent home with strict orders to rest, and continuing monitoring the symptoms. oh, by the way, finally a hot resident entered the picture. he was soooo adorable. but i'm sure my extensive medical history is a total turn-on.

no jinxing!!

as most of you know, i've been going through a relapse that was spearheaded by a nasty flare of my TN (trigeminal neuralgia). i was immediately hooked up to the juice, and the high powered steroids were flowing through my veins. meanwhile, i was praying this would work- hell, i would even have settled for "taking the edge off."

i've been bursting with the good news to share with you guys, but i've been hesitant in case my bragging would be a huge jinx. so i held my breath, and waited... friday, ...saturday, ...sunday, and monday. now today. THE STEROIDS WORKED! (for once) my TN is down to a pain level 3 out of 10- something that hasn't occurred in months. now i can have mature, adult conversations without wanting to throttle the person smacking her jaws in front of me! but i do have 1 request- everyone reading this posting must IMMEDIATELY stop what you are doing and knock HARD on the closest piece of wood you can find. if i wake up to my face throbbing and the size of a pumpkin, you will be blamed for jinxing my TN triumph. (remember, i know where you live!)


did you do it? (and no, julie, hitting "one of your designers" up side the head doesn't count!) i'm not writing another word until i hear some knocking people!!!

whew! i'm breathless from the excitement! but now i'm going to bring it down a level, because i have to vent about the searing, humid, sweat-dripping, sizzling, disgusting heat that has started a reign of terror in october. if i didn't have a PA driver's license i would swear i'm back in high point, north carolina. and have i mentioned it is october? there are 2 things that lead to the downfall of a person with MS- one is stress, the other is heat.

side note- back in the day, before neurologists had legit medical instruments and fancy MRI machines, they confirmed MS diagnosis by the "hot bath test." i know, i know, it sounds like a total quack job, but it's true- they would immerse a suspected patient in a steaming hot tub of water, and observe the appearance of neurological symptoms, or their worsening,as evidence that the person did have MS.

the short version answer as to why heat is so bad for ms patients is that nerves have a harder time conducting messages at higher temperatures. in my case, i already have faulty, jacked up nerves, so this means my nerves will have 2 or 3 times harder of a time conducting messages if it's hot outside. it's like a casting call for all of my symptoms to come to the surface- i get weak, dizzy, ac achey, numb, nauseous, confused, exhausted. and it's not just 80 degree weather that is to blame- anything that increases your body temperature, be it hot showers/baths, strenuous exercise, hot tubs, contracting an illness, even getting emotional. your doctor's rule of thumb will always be to avoid such situations as much as possible- sunbathing and hot tubs should be out of the question!! (there are those lucky bastards that are not affected by heat, and we hate them.)

so that's my sharing of good news today- no facial pain! but if it's one thing, it's another. so now i am dealing with this lovely humid heat that has been seeping into my body, settling around my bones like sand, and keeping me from movement. in fact, this morning was so difficult that i was tempted to strip down to my underwear in the kitchen, so i stuck my head in the freezer instead. i will leave you with that memory. good night!

ironic

i've tackled the quandary of my health insurance "issues" in previous postings, and for those of you that have kept up to date on the continuing saga, you will find this ironic. (that is, of course, if by "ironic" you realize that i mean "yet-another-example-of-the-lack-of-urgency-and-follow-through-in-government-programs.")

a quick recap. since i stopped working at Arnold due to disability, i am automatically given an extension of coverage from my existing health insurance through Cobra (at the bargain basement price of $536 a month.) since i have a chronic disease and no income, the state of PA provides me with health insurance free of charge (or at drastically reduced costs) through the Pennsylvania Access Card program (PAC.) PAC covers all of my medications except for one (Tysabri)- they require MS patients to use Copaxone. but they do give you the option of getting such exceptions "pre-authorized"- through the typical paperwork, doctor authorization, your right arm and signing away your unborn child. i enrolled in the PAC program in May, which is when we began the "pre-authorization" process on Tysabri. (key word- began.)

fast forward to present day. i am no longer taking Tysabri and therefore in the process of disbanding my ridiculously expensive Cobra insurance, opting for the PAC as my primary insurance. mom drops a letter in my lap this afternoon from the PA State Welfare Administration. puzzled, i ripped open the flap, and pulled out documentation that formally stated PAC would cover my Tysabri treatments from now on. isn't that nice of them? conveniently, one thousand, seven hundred and eighty dollars later, PA has decided they will now pick up the tab. for a treatment i am no longer having.

aaaauuuuuuuggggghhhhh. shaking my head, all i can do is laugh bitterly. do you have any idea how sick i get of dealing with this bullshit. hours, and hours, days and days of my blood, sweat, and tears. ok, dramatics are over. but this does create a segue into the Tysabri situation. right from the top, i'll admit it. i thought Tysabri was going to be my magic answer. in typical meg fashion, i never stopped to consider anything else- it was Tysabri all the way. in fact, i was making an ever-growing mental list of the all things i would be doing by the fall (um, now)- taking ballroom dance lessons, working out on the elliptical machine, searching out the local hiking trails, learning how to cook (not in a plastic pot), travel all over the country visiting friends, volunteering at the hospital, finish writing my book- maybe even drink red wine again (that might be pushing it). basically, i was planning on making up for the past 365 days of my life. unfortunately, as that list of "will do's" grew longer, so did my list of "can't do's."

it had been 7 months of Tysabri, and it was obvious that the treatments were not making much progress. there was no way in hell i was going to be the one to point that out. after all, maybe i was being too critical, too optimistic, or just too close to the situation. but it wasn't just me. after my recent flare and slow, but continuous, worsening of symptoms, my internist and neurologist strongly recommended stopping the treatments- they felt there were more appropriate, and aggressive, options available. they had been analyzing recent research on Tysabri's side effects, and believed the drug was aggravating my already sensitive GI system, and responsible for the daily migraines. in addition, the results showed significant percentages of symptoms that paralleled my increased degrees of discomfort- emerging joint pain, nausea, increased extremity pain, additional fatigue.

some of you might be wondering "didn't they have this information already? it's not like meg is the first person in the country to take this medication." you're partly right, we did have the basics. but Tysabri is still fairly new. it's only been on the market for two years, so more detailed and specific studies are just starting to surface. there is also a good possibility that my body developed positive antibodies to the drug (ironically, the exact same thing happened with Betaseron)- studies show that this is happens to approx. 6% of patients. but the formal test for antibodies can be expensive, and most insurances won't approve the charge- especially if an alternative is an available medication. (for once, i agree with them- i'm going off the drug regardless, so the confirmation isn't going to do me any good.)

i was given the option of four treatments to pursue:

1. rebif: 3x/week injection
2. copaxone: daily injection
3. clinical trial (oral medication): administered by the clinic's retired MS neurologist out of his hershey, pa office
4. monthly iv solu-medrol treatments (aka "steroid pulses"): 3-5 day iv treatment in the clinic to relieve inflammation

of course ultimately, the decision to cease Tysabri was up to me. emotionally, their recommendation was hard to swallow, but i have to have faith in my doctors. sharon (MS nurse practitioner- she has lots of other acronyms behind her name) and dr. weber (my new internist) have talked extensively about my case- sharing information they each have on my condition, are there better ways to handle treatment, etc. this is a rarity in health care. it seems obvious, right? of course doctors would consult one another about a shared patient. but trust me, it doesn't happen. i don't care how many papers you fill out, signing away permission for your GP to talk to your dermatologist, for your ophthalmologist to talk to your neurologist, and your podiatrist to talk to your gynecologist (i don't know why your foot doc and your gyno would need to talk, but you get the drift.)

so... where does this leave me? well, i have to wait 3 months for my body to purge any remnants of the Tysabri. in the meantime, i will have doses of IV solu-medrol from time to time, to get me through the coming weeks. at the moment, the winner is looking like.... .... copaxone! because it is not an interferon beta treatment, the "hangovers" won't be as debilitating. (technically, they are referred to as "flu-like symptoms". i call them "hangovers" because they literally feel like one- only without the scandalous, bar- hopping good time of the night before! totally not fair.) this is a key factor, since the injections are daily.

in addition, i will have monthly steroid pulses to supplement the copaxone. my thinking is this: the copaxone will be in charge of the future, and the steroid pulses can take care of the present. when you are faced with an illness, even your common cold, all you can think about is feeling better- now. you're not thinking about how many more colds you will have between now and when you're 94. the same is true with my MS. trust me, i get the gravity of the situation. but to be honest, the status of my future disability is soooooo far from my mind. by combining the two, i might be able to control the chronic symptoms and get on with my life- both now, and fifty years from now. (plug for MS Walk 08- if we get out there and raise more $$ next year, maybe i won't have to wait 20 years!)

but stay tuned. i've been known to be indecisive.