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...."
10.23.2007
10.17.2007
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!)
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.
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.
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.
10.08.2007
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!
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!
10.01.2007
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.)
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:
- rebif: 3x/week injection
- copaxone: daily injection
- clinical trial (oral medication): administered by the clinic's retired MS neurologist out of his hershey, pa office
- 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....
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.
9.26.2007
refresher course
it's funny how quickly our minds forget things. for example, i found myself ranting and raving endlessly about the "traffic jam" crossing the bridge from Montandon to Lewisburg on the way home from Geisinger. um, helloooo. is this the same girl who would sit on the gw parkway an hour to go 5 miles? now that is a traffic jam. of course this came to mind when i got suited up with the port to take in the juice (my street slang for the 1000mg IV Solu-Medrol) over the course of my 4 day infusion treatment. it has been 7 months- february- since i've gone through the drip, which isn't really that long ago. apparently it was long enough to forget the signature ups and downs (mainly downs) that come with the steroid treatment. but it quickly jump started my memory.
i'll start off with the juice's trademark- the fact that i am wide awake at 3:50am typing this posting. on such a high dosage of steroids, sleep is pretty much stricken from the vocabulary. although i was actually able to fall asleep from midnight until 3:15, which is pretty unusual give my track record on the drug. and it was definitely better than the "power nap" i snuck in from 5:30 to 6:30am early wednesday, even with the 24 mg of AmbienCR they prescribe to counter the effect. my insides feel like they are high on drugs at an all night rave, screaming "Aauughh %@*&#!" (they better stop screwing around and get to work halting the intensity of my symptoms!!) i've also been craving ice cream constantly (i had 2 bowls tonight- with 2 brownies!) and going through episodes of intense itching. not to mention the major backup going on in my digestive tract (the daily scoops of MiraLAX have increased from 5 to 8- i suggest Crystal Lite's "Fruit Punch" as the mixer.) if this isn't enough, i'll throw in breaking out in night sweats (but during the day!) and all the water i've still managed to retain!!
hmmm, maybe i should back up and fill in some of the blanks as to how we got here. as you know from last night's posting, 1 of the 3 atrocities that occurred in my health explosion this week is the fact that i am experiencing a flare (attack, relapse, flare, exacerbation- these are all the same things. i use flare only b/c it's easier for me to spell and say!) the suspicions that were voiced at my check-in appointment on sept 10th, unfortunately came to fruition.
because i have experienced the majority of ms symptoms (either in the past, or currently), an exacerbation in my case is a sudden worsening of a symptoms lasting at least 24 hours. (for others with a smaller percentage of ms-related symptoms, an exacerbation could be the appearance of a new symptom, also lasting at least 24 hours. unfortunately, most flares last anywhere from days to weeks, even to months. this is where the high dosage of corticosteroids comes in- in theory, they will cause an exacerbation to be shorter and/or less severe. at my doctor's office, treatments are given in a private infusion room at the ms clinic, administered by a nurse on staff. due to the instability of my veins, have to wrap my arms in warm towels to help bring the veins to the surface. they usually call in a dedicated IV Team (the team roams the hospital going from department to department starting lines) to insert the port. calling in the pros for this part of the process is important because the port has to last for the duration of your treatment- in my case, until friday.
hands down the worst part of this flare is dealing with TN, trigeminal neuralgia, (what you hear me frequently refer to as "facial pain") for a week straight with pain levels at 9-10 out of 10. the pain has been all-consuming, and nonstop (i wake up with it, i go to sleep with it)- even carrying on a conversation has become daunting, as it turns the aching sears of pain into full fledged throbbing. you might have noticed that your calls are going through to my voice mail, and i have gotten back to you through email- it is for this reason alone. (and not my usual dodginess.)
for those of you that have ever had a migraine, imagine that same degree of pain radiating down your cheeks and jaw. if you haven't suffered from a migraine, all i can say is that it feels like someone is stabbing you repeatedly down both sides of your face. although i suffer from TN pretty regularly, the agony of the past week goes beyond what i can normally put up.
the technical aspect: the pain comes from a neuropathic disorder of the trigeminal nerve (the largest of our cranial nerves- look for the yellow markings on the brain in the diagram to your left). in a case of TN, an irritant is pressing on, or disrupting, the nerve itself, making the face hypersensitive and causing episodes of intense pain in your eyes, lips, nose, scalp, forehead and jaw. even normal actions such as chewing, talking, brushing your teeth, a light touch, become incredibly painful. while TN is not exclusive to MS, experiencing the condition on both sides of your face is. as far as treatment is concerned, anti-convulsant drugs (i use Tegretol) are commonly used to decrease the spread of the hypersensitive electrical charges. unfortunately, long term relief is difficult to achieve for MS patients, since the medication rarely results in permanent pain control.
medical history lesson of the day: to give you an example of just how painful this condition can be, it was frequently referred to as the "suicide disease" due to the large numbers of people taking their own lives before effective treatments were available.
the other acute worsenings also have to do with pain, but this time in my extremities- my feet and legs. it has gotten to the point where i cannot stand up at the bathroom sink to brush my teeth, unload the dishwasher, or stand in line without being crippled by debilitating pins and needles in both of my feet. the pain is even evident on the outside when i am barefoot or in sandals- my feet swell, and turn bright red/pink (almost like circulation is being cut off.)
as for my legs, a frequent bane of my existence, they have escalated back up the pain scale to a level 8-10 out of 10 on a daily basis. i tell my parents that an invisible man must be bashing a hammer repeatedly from my thighs down to my feet. fortunately, my new internist has put me back on the morphine patch, but when the pain has already escalated to this point, it is hard to get back down to a manageable level.
so welcome to meg's exacerbation experience. i do have some good news for you- as of tonight, i'm starting to get relief from the TN flare. the face pain has only been a 5 out of 10, which means my hands have gotten a much needed break from balancing cold packs on my cheeks throughout the day. hopefully this means we are turning a corner, but you should still expect another posting tomorrow at 2am.
i'll start off with the juice's trademark- the fact that i am wide awake at 3:50am typing this posting. on such a high dosage of steroids, sleep is pretty much stricken from the vocabulary. although i was actually able to fall asleep from midnight until 3:15, which is pretty unusual give my track record on the drug. and it was definitely better than the "power nap" i snuck in from 5:30 to 6:30am early wednesday, even with the 24 mg of AmbienCR they prescribe to counter the effect. my insides feel like they are high on drugs at an all night rave, screaming "Aauughh %@*&#!" (they better stop screwing around and get to work halting the intensity of my symptoms!!) i've also been craving ice cream constantly (i had 2 bowls tonight- with 2 brownies!) and going through episodes of intense itching. not to mention the major backup going on in my digestive tract (the daily scoops of MiraLAX have increased from 5 to 8- i suggest Crystal Lite's "Fruit Punch" as the mixer.) if this isn't enough, i'll throw in breaking out in night sweats (but during the day!) and all the water i've still managed to retain!!
hmmm, maybe i should back up and fill in some of the blanks as to how we got here. as you know from last night's posting, 1 of the 3 atrocities that occurred in my health explosion this week is the fact that i am experiencing a
because i have experienced the majority of ms symptoms (either in the past, or currently), an exacerbation in my case is a sudden worsening of a symptoms lasting at least 24 hours. (for others with a smaller percentage of ms-related symptoms, an exacerbation could be the appearance of a new symptom, also lasting at least 24 hours. unfortunately, most flares last anywhere from days to weeks, even to months. this is where the high dosage of corticosteroids comes in- in theory, they will cause an exacerbation to be shorter and/or less severe. at my doctor's office, treatments are given in a private infusion room at the ms clinic, administered by a nurse on staff. due to the instability of my veins, have to wrap my arms in warm towels to help bring the veins to the surface. they usually call in a dedicated IV Team (the team roams the hospital going from department to department starting lines) to insert the port. calling in the pros for this part of the process is important because the port has to last for the duration of your treatment- in my case, until friday.
hands down the worst part of this flare is dealing with TN, trigeminal neuralgia, (what you hear me frequently refer to as "facial pain") for a week straight with pain levels at 9-10 out of 10. the pain has been all-consuming, and nonstop (i wake up with it, i go to sleep with it)- even carrying on a conversation has become daunting, as it turns the aching sears of pain into full fledged throbbing. you might have noticed that your calls are going through to my voice mail, and i have gotten back to you through email- it is for this reason alone. (and not my usual dodginess.)
for those of you that have ever had a migraine, imagine that same degree of pain radiating down your cheeks and jaw. if you haven't suffered from a migraine, all i can say is that it feels like someone is stabbing you repeatedly down both sides of your face. although i suffer from TN pretty regularly, the agony of the past week goes beyond what i can normally put up.
the technical aspect: the pain comes from a neuropathic disorder of the trigeminal nerve (the largest of our cranial nerves- look for the yellow markings on the brain in the diagram to your left). in a case of TN, an irritant is pressing on, or disrupting, the nerve itself, making the face hypersensitive and causing episodes of intense pain in your eyes, lips, nose, scalp, forehead and jaw. even normal actions such as chewing, talking, brushing your teeth, a light touch, become incredibly painful. while TN is not exclusive to MS, experiencing the condition on both sides of your face is. as far as treatment is concerned, anti-convulsant drugs (i use Tegretol) are commonly used to decrease the spread of the hypersensitive electrical charges. unfortunately, long term relief is difficult to achieve for MS patients, since the medication rarely results in permanent pain control.medical history lesson of the day: to give you an example of just how painful this condition can be, it was frequently referred to as the "suicide disease" due to the large numbers of people taking their own lives before effective treatments were available.
the other acute worsenings also have to do with pain, but this time in my extremities- my feet and legs. it has gotten to the point where i cannot stand up at the bathroom sink to brush my teeth, unload the dishwasher, or stand in line without being crippled by debilitating pins and needles in both of my feet. the pain is even evident on the outside when i am barefoot or in sandals- my feet swell, and turn bright red/pink (almost like circulation is being cut off.)
as for my legs, a frequent bane of my existence, they have escalated back up the pain scale to a level 8-10 out of 10 on a daily basis. i tell my parents that an invisible man must be bashing a hammer repeatedly from my thighs down to my feet. fortunately, my new internist has put me back on the morphine patch, but when the pain has already escalated to this point, it is hard to get back down to a manageable level.
so welcome to meg's exacerbation experience. i do have some good news for you- as of tonight, i'm starting to get relief from the TN flare. the face pain has only been a 5 out of 10, which means my hands have gotten a much needed break from balancing cold packs on my cheeks throughout the day. hopefully this means we are turning a corner, but you should still expect another posting tomorrow at 2am.
9.25.2007
rewind
what a great week. on saturday, i received the official "denied" letter from our illustrious Social Security Administration. on monday, i received a call from my internist with her strong recommendations to go off of Tysabri (the monthly infusion therapy for my MS). next to call was sharon, my MS nurse practitioner, who confirmed my suspicions that i was in the midst of a flare, and scheduled a 4-day IV solumedrol treatment. since bad things tend to come in threes, i'm demanding immunity for the rest of this week.
i filed for social security disability in march. i had been urged to apply by my former psychiatrist, internist, and neurologist in d.c., but it took a bit longer to be completely convinced. i associated disability with an MS-death sentence. my mind cycled slideshows of those big ugly burgundy handicapped vans, rickety wheelchairs, elastic pants, 
flowered canes, and chunky orthopedic mules. and to be honestly i thought it would mean i had reached the end of my rope in trying to recover from this wicked flare. i would mean giving up.
i'll break it down for you (in a VERY abbreviated format.) you start by choosing to schedule an appointment in person at your county's SSA office, or on the telephone with an SSA representative (which i chose due to my mobility and fatigue issues- i assumed they didn't have a cot in the back i could go lay down on halfway through our interview.) you give repetitive, intimate information about your complete health history to a total stranger who will have no influence at all over the Administration's final decision. you provide a list of every doctor who might had seen you for any reason for the last year leading up to your disability, and sign a waiver for each of these offices to release your files to the Administration. (you are then charged $0.15-0.75 per page for your someone at your doctors' offices to press "copy", collate and lick the envelope to mail these files- with no sense of urgency whatsoever.) the representative tells you it will be at 3-4 months before you have your final decision, but i'd suggest you double that figure.
the Administration then contacts you approximately 3 months later saying that they do not have enough "information" on your condition, and could you please answer fill out a questionnaire and a function report that totals 20 pages? (what this really means is that your medical files are way too large for them to go through, so would you please do the work for them?) these documents ask highly technical and obviously influential questions such as "Do you take medication?", "Describe your daily activities.", "How much weight can you lift?", and "How far can you walk?". throughout the process, the Administration will frequently send you letters (never picking up the telephone- the horror!) to say that Dr. X has not responded to their "frequent" attempts to contact him/her, and could you please intervene on their behalf? (i don't know about you guys, but getting a doctor on the phone is next to impossible. i would think the "Social Security Administration" has way more pull than the patient!!)
after the "3 or 4" month deadline has passed, you contact your Adjuciator (has anyone else ever heard of this term?) or the state appointed "legal representative" that the SSA so willingly provided you to make sure there is always someone "looking out for your best interests." btw, i don't think either one of these people have ever picked up a phone in their life. so plan on spending about 2 or 3 weeks calling their office(s) on a daily basis- sometimes twice a day- just to see which one you can contact first. the "3 or 4" months quickly passed into "5 or 6" months and i began to get panicky (this escalated each time i received my monthly bank statement. or lack thereof.) i did get in touch with the "Adjuciator"who told me she doesn't have time to return phone calls, so i should just keep calling until she picks up. (wow. can you imagine saying that to a client? only in our federal government system.) she then told me that the system is overloaded, and they are very backed up, so it would be at least another 2 months before a decision was made in my case.
kevin (constituent advocator) explained that they have to tread very carefully, making sure they are not seen as putting "pressure" on the SSA, and what they have the most success is in expediting hearings once the claim goes into an appeal. after i explained my situation (when i had applied, what i had found out on my phone calls, that i knew i would be rejected, but need to get the appeal process started which i can't do right now), he said he would work on seeing what he could do to expedite the original decision. i was then emailed a waiver, with my signature allowing his office to have access to my medical files and contact the SSA on my behalf. this was the week of the 10th, and it was on saturday (the 22nd) that i received a large, bulky envelope from the Administration. i know it was because of kevin's involvement under the office of senator casey, jr. like we all know, it's good to have connections, especially political ones.
i hope you have a fresh cup of coffee (a slightly stale one will do) because each of these depressing, frustrating, hopeless, unfair, infuriating, and jacked up situations warrants their own posting. happy reading blog-a-maniacs!
Social Security vs. a "mentally challenged" woman with "un-severe enough MS"
i filed for social security disability in march. i had been urged to apply by my former psychiatrist, internist, and neurologist in d.c., but it took a bit longer to be completely convinced. i associated disability with an MS-death sentence. my mind cycled slideshows of those big ugly burgundy handicapped vans, rickety wheelchairs, elastic pants, 
flowered canes, and chunky orthopedic mules. and to be honestly i thought it would mean i had reached the end of my rope in trying to recover from this wicked flare. i would mean giving up.but i quickly came to realize that giving up had nothing to do with getting the resources i deserved to keep fighting. so after i was denied coverage from the disability insurance i held at arnold, and watched my medication co-pays, physician visits and monthly cobra payments drain the dismal amount of money in both checking and savings, i began to reconsider. i mean hell, i already use a cane and am pushed around in wheelchairs (some drivers being better than others.) and besides, this is what our tax dollars, paycheck deductions and government programs are there to do- help people that need it. so let the mountains of paperwork begin!
i'll break it down for you (in a VERY abbreviated format.) you start by choosing to schedule an appointment in person at your county's SSA office, or on the telephone with an SSA representative (which i chose due to my mobility and fatigue issues- i assumed they didn't have a cot in the back i could go lay down on halfway through our interview.) you give repetitive, intimate information about your complete health history to a total stranger who will have no influence at all over the Administration's final decision. you provide a list of every doctor who might had seen you for any reason for the last year leading up to your disability, and sign a waiver for each of these offices to release your files to the Administration. (you are then charged $0.15-0.75 per page for your someone at your doctors' offices to press "copy", collate and lick the envelope to mail these files- with no sense of urgency whatsoever.) the representative tells you it will be at 3-4 months before you have your final decision, but i'd suggest you double that figure.
the Administration then contacts you approximately 3 months later saying that they do not have enough "information" on your condition, and could you please answer fill out a questionnaire and a function report that totals 20 pages? (what this really means is that your medical files are way too large for them to go through, so would you please do the work for them?) these documents ask highly technical and obviously influential questions such as "Do you take medication?", "Describe your daily activities.", "How much weight can you lift?", and "How far can you walk?". throughout the process, the Administration will frequently send you letters (never picking up the telephone- the horror!) to say that Dr. X has not responded to their "frequent" attempts to contact him/her, and could you please intervene on their behalf? (i don't know about you guys, but getting a doctor on the phone is next to impossible. i would think the "Social Security Administration" has way more pull than the patient!!)
after the "3 or 4" month deadline has passed, you contact your Adjuciator (has anyone else ever heard of this term?) or the state appointed "legal representative" that the SSA so willingly provided you to make sure there is always someone "looking out for your best interests." btw, i don't think either one of these people have ever picked up a phone in their life. so plan on spending about 2 or 3 weeks calling their office(s) on a daily basis- sometimes twice a day- just to see which one you can contact first. the "3 or 4" months quickly passed into "5 or 6" months and i began to get panicky (this escalated each time i received my monthly bank statement. or lack thereof.) i did get in touch with the "Adjuciator"who told me she doesn't have time to return phone calls, so i should just keep calling until she picks up. (wow. can you imagine saying that to a client? only in our federal government system.) she then told me that the system is overloaded, and they are very backed up, so it would be at least another 2 months before a decision was made in my case.
by this point, i was beyond stressed out. cobra was running us $530/mo- a fee that Mom and Dad have had to take on since my bling was blaaaaaahhhh. even though i have state supported medicare, it doesn't cover Tysabri, so we were keeping BCBS to cover that one infusion. ($530 is better than $1700 for Aloxi + $2,000 for the Tysabri) but my friend stacie had had it with my SSA nightmare. she was so infuriated on my behalf, that she strapped on her MS Ninja Girl uniform, grabbed her nunchucks and decided to take on the state of pennsylvania. thanks to her, a constituent advocate from senator robert casey jr.'s office called me before i could finish her entire email. (elle had always told me that much of a congressional or senator office's role is intervening on behalf of its constituents, i.e. passports. but of course that information was not retained nor linked at the time of my SSA run-ins.)
kevin (constituent advocator) explained that they have to tread very carefully, making sure they are not seen as putting "pressure" on the SSA, and what they have the most success is in expediting hearings once the claim goes into an appeal. after i explained my situation (when i had applied, what i had found out on my phone calls, that i knew i would be rejected, but need to get the appeal process started which i can't do right now), he said he would work on seeing what he could do to expedite the original decision. i was then emailed a waiver, with my signature allowing his office to have access to my medical files and contact the SSA on my behalf. this was the week of the 10th, and it was on saturday (the 22nd) that i received a large, bulky envelope from the Administration. i know it was because of kevin's involvement under the office of senator casey, jr. like we all know, it's good to have connections, especially political ones.
despite my rational expectations, the fact that it wasn't a super thin no. 10 envelope mislead me- briefly. (remember applying for college? you never wanted to see those small envelopes.) i thought maybe, just maybe, something had gone my way. i mean, medical records can't lie! doctor's orders can't be misread! but that hope evaporated as soon as i opened the tab. my claim had been denied because i did not qualify as disabled under "their rules." (these "rules" can be found online in the SSA's "Disability Blue Book"- MS falls under 11.09) among other things, my MS isn't "severe enough" and i am too young to be disabled (these are almost exact quotes- the letter is downstairs.) my favorite line was that i should instead look for work that is "less mentally challenging".
like i said above, we were expecting this to happen. but when the rejection came, it hit me harder than i expected. i was insulted, my feelings were hurt,- i was enraged that in this day and age, when so much is known about MS (and it is a real and documented disease), that a government agency has the ability to tell me how severe my MS is. do they honestly think i PREFER living at home, losing my career, having limited mobility, waging a daily battle with my inability to process information and have a normal conversation? or do they not even see me as a person at all? i'm thinking the latter. not to mention that my age is apparently an issue. and ALL of my recent doctors, from my psychiatrist in va and my internist and neurologist @ georgetown, to my current my internist, nurse practitioner and neurologist at geisinger, gastroenterologist at evan, and my physical therapist here in pa, have documented in my files that i should not be working, as returning even part time would compromise my fragile health condition.
i had been introduced (electronically, that is) to a lawyer out of philly who had handled a recent disability case for one of the women at the MS support group mom attends here in town. i contacted karen (the lawyer) a month ago, wanting to know how i would go about filing for an appeal and what her assistance would be in the matter. right off the bat, she was extremely supportive and positive about the outcome of my case. she has lots of experience with ms patients and disability claims, and she verified my suspicions that my age is being used against me. i am classified as "younger" (anyone under the age of 49) by the Administration and automatically denied at the first level. the assumption is that there must be some work that i can do. by rejecting me, they assume i will be daunted by the decision and the work and time involved in an appeal, and will just go away. but she has every expectation that we will receive a positive outcome when we get in front of a judge.
when i received the rejection on saturday, i immediately emailed her to ask if she could take my case, and i recieved her acceptance on monday. luckily, she only charges her fee if we are successful in our appeal claim (she mentioned this is mandated by the Administration also)- she collects 25% of the back due benefit up to $5,300. (so, if i get a back due benefit of $8,000, she gets $2,000; if i get a back due benefit of $30,000, she is capped at $5,300.) from my research, the benefits vary from person to person based on how much you have put into the system. and as far as timing is concerned, that's a bit ambiguous (shocking.) the appeal must be filed within 60 days from receiving the denial, and after that, the Administration and the lawyer have to request all of my medical records (i think there is an entire forest in n. dakota that is treeless due to my medical paperwork) to review, and the hearing will be scheduled anywhere from 6 months to 1 year. (i'm trying not to cringe at the timeframe.)
so kids, i'm callin' it a night- am going to power down this little hottie (the laptop, not me) and try to sleep with my heart racing and face pounding. (ahhh i've missed you IV steroids!) i hope you have enjoyed your lesson on the inner workings of our nation's social security administration. thanks for staying with me 'til the end- both literally and figuratively. and as always, i'm open to your illustrious wisdom and advice.
9.12.2007
sweet setup
yesterday (tuesday) was the big day. i was headed to Geisinger medical center to be the first MS patient to receive Tysabri in the Knapper Clinic's infusion center. it was wonderful for the excursion to start out at 10am- much better than the 6:30 wake up call for Harrisburg over the past 4 months. of course it was raining horrifically, and there wasn't an available handicapped space in sight. luckily i had chauffeur Jean (aka mom) who was kind enough to drop me off at the main entrance while she parked Carlyle (my camry.)
Sharon is the nurse practitioner in Geisinger's neurology dept who specializes in MS. she's been the crusader for offering Tysabri at the clinic, and truly passionate about helping her patients. we walked into bad news, which is never a good start to a long day. i was not going to be able to receive Aloxi, an anti-nausea medication that lasts an entire week. since its re-release, there isn't a lot of data on Tysabri's side effects, and i have found that even doctors and nurses that are trained to disperse the drug are not educated on this aspect of the medication. (there seems to be a "wait and see" approach.) i get many of the minor side effects- itching, fatigue, joint pain- but the worst is the violent cramping and persistent nausea. after the first infusions in march and april, i demanded an anti nausea medication. i didn't care that "most people don't suffer from nausea." i was, and dammit they were going to help me get through it! hence my relationship with Aloxi, which has proven a life saver.
i still have my private insurance through Arnold- BCBS of Massachusetts- but it is cobra based, so we're handing over $550/month just to keep the benefit. (medicare won't pay for Tysabri, but don't get me started on that.) BCBS refused to pre-authorize the drug. they said i had to have cancer to fund the prescription (Aloxi is used primarily for chemo patients.) this was at 3:30 last friday (yeah, good luck getting in touch with anyone after noon on Friday, no matter where you work!) so on monday, surprisingly, medicare said they would pay for the drug, BUT here's the catch. Geisinger (the hospital) requires you to sign a waiver saying that you will pay for the drug out of pocket if the insurance doesn't go through. guess how much this out of pocket drug costs? $1750. um, no way in hell was i signing that slip of paper. luckily, i have Zofran tablets that i use for the persistent nausea my GI problems cause, so i was able to pre-medicate with that. (while it has taken the edge off, i am still suffering from painful cramping and persistent nausea that has left me curled up in bed with a pillow padded against my poor stomach.)
even with the news about Aloxi, i had managed to hold myself together emotionally. that flew out the window when sharon asked "so how have you been feeling lately?"- i promptly burst into tears. the past week had been difficult, both emotionally and physically. it is typical for my body to start falling apart as the next infusion approaches. all of my symptoms decide to come out and play, wreaking havoc on my daily lifestyle. but this time things were different. i have had some new symptoms, plus a resurgence of some i haven't had in over a year- intense, daily migraines. when i raise my arms, they go numb. i'm constantly dizzy, and peeing just as frequently. in addition to the MS symptoms, my GI problems are persisting, if not worsening, and i'm being ping ponged from my internist to neurologist to gastroenterologist and back again.
we talked at length about the situation, and her suspicion is that a new lesion could be forming in my neck, and that i'm most likely in the beginning of a flare. when she said this, i was oddly calm. when it comes to my body, i'm pretty intuitive- i think we all are. and it felt good to fess up to what was going on physically- i had been bottling it in, nervous and wary of what this could mean, what would happen to me. Sharon said "you know, Tysabri isn't for everyone." and she's right. i had looked at Tysabri as this golden drug, this miracle cure. and there are other options. even with all this drama, there was some good news at the pre infusion appt- to quote Sharon, my brain MRI looks "beautiful." no decrease in lesions, but no increase either. (unfortunately, the lesions alone don't provide an accurate picture of a person's severity of MS, it's just one of the diagnostic tests.)
after our lengthy meeting, she loaded me up with paperwork and sent me off to Knapper Clinic, on the other side of the medical campus. she advised us to be patient, and warned us that things may not go too smoothly when we first arrive. let me tell you- that place is quite the operation! not only did things go smooth as silk, but i almost forgot i had a needle sticking out of my arm and a machine beeping my blood pressure and pulse every 30 minutes. beep. beep. beep. (god i wanted to throw that machine out the window.) the nurses were super sweet, and they hooked me up with a corner room with a view. (i guess i'll settle for a hospital partition since the corner office isn't in the cards anymore!)
here's the best part- the chairs had a massage button option, AND various levels of heating. all at the click of a button! my mom got the guided tour (i was too wiped out, i basically passed out in the chair once we got settled) and came back with snacks. there were sandwiches, chips, drinks, hot chocolate, coffee- anything you can think of. oh- and your own personal TV (with headphones) that extends out from a huge arm attached to the wall, wireless internet, and even portable DVD players you can check out. out of nowhere came a nurse with a digital camera (damn those paparazzi- they never leave me alone!)- they wanted my picture so that they can learn who i am, and identify me in the future. i was so impressed!
so now i'm back at the ranch, where poor mom has 2 patients to deal with. dad had surgery last week to take care of the prostate cancer- he came home from Fox Chase Cancer Center in Philly on saturday evening. his recovery continues, but he's not very comfortable and is having some unpleasant side effects from the operation. i'm acting as a drug consultant and medical specialist, much to his appreciation ;) thank you to everyone who was praying for him (and us), and who have requested an update on the situation. we'll find out officially on tuesday if the docs got all the cancer, but the prognosis is positive.
Sharon is the nurse practitioner in Geisinger's neurology dept who specializes in MS. she's been the crusader for offering Tysabri at the clinic, and truly passionate about helping her patients. we walked into bad news, which is never a good start to a long day. i was not going to be able to receive Aloxi, an anti-nausea medication that lasts an entire week. since its re-release, there isn't a lot of data on Tysabri's side effects, and i have found that even doctors and nurses that are trained to disperse the drug are not educated on this aspect of the medication. (there seems to be a "wait and see" approach.) i get many of the minor side effects- itching, fatigue, joint pain- but the worst is the violent cramping and persistent nausea. after the first infusions in march and april, i demanded an anti nausea medication. i didn't care that "most people don't suffer from nausea." i was, and dammit they were going to help me get through it! hence my relationship with Aloxi, which has proven a life saver.
i still have my private insurance through Arnold- BCBS of Massachusetts- but it is cobra based, so we're handing over $550/month just to keep the benefit. (medicare won't pay for Tysabri, but don't get me started on that.) BCBS refused to pre-authorize the drug. they said i had to have cancer to fund the prescription (Aloxi is used primarily for chemo patients.) this was at 3:30 last friday (yeah, good luck getting in touch with anyone after noon on Friday, no matter where you work!) so on monday, surprisingly, medicare said they would pay for the drug, BUT here's the catch. Geisinger (the hospital) requires you to sign a waiver saying that you will pay for the drug out of pocket if the insurance doesn't go through. guess how much this out of pocket drug costs? $1750. um, no way in hell was i signing that slip of paper. luckily, i have Zofran tablets that i use for the persistent nausea my GI problems cause, so i was able to pre-medicate with that. (while it has taken the edge off, i am still suffering from painful cramping and persistent nausea that has left me curled up in bed with a pillow padded against my poor stomach.)
even with the news about Aloxi, i had managed to hold myself together emotionally. that flew out the window when sharon asked "so how have you been feeling lately?"- i promptly burst into tears. the past week had been difficult, both emotionally and physically. it is typical for my body to start falling apart as the next infusion approaches. all of my symptoms decide to come out and play, wreaking havoc on my daily lifestyle. but this time things were different. i have had some new symptoms, plus a resurgence of some i haven't had in over a year- intense, daily migraines. when i raise my arms, they go numb. i'm constantly dizzy, and peeing just as frequently. in addition to the MS symptoms, my GI problems are persisting, if not worsening, and i'm being ping ponged from my internist to neurologist to gastroenterologist and back again.
we talked at length about the situation, and her suspicion is that a new lesion could be forming in my neck, and that i'm most likely in the beginning of a flare. when she said this, i was oddly calm. when it comes to my body, i'm pretty intuitive- i think we all are. and it felt good to fess up to what was going on physically- i had been bottling it in, nervous and wary of what this could mean, what would happen to me. Sharon said "you know, Tysabri isn't for everyone." and she's right. i had looked at Tysabri as this golden drug, this miracle cure. and there are other options. even with all this drama, there was some good news at the pre infusion appt- to quote Sharon, my brain MRI looks "beautiful." no decrease in lesions, but no increase either. (unfortunately, the lesions alone don't provide an accurate picture of a person's severity of MS, it's just one of the diagnostic tests.)
after our lengthy meeting, she loaded me up with paperwork and sent me off to Knapper Clinic, on the other side of the medical campus. she advised us to be patient, and warned us that things may not go too smoothly when we first arrive. let me tell you- that place is quite the operation! not only did things go smooth as silk, but i almost forgot i had a needle sticking out of my arm and a machine beeping my blood pressure and pulse every 30 minutes. beep. beep. beep. (god i wanted to throw that machine out the window.) the nurses were super sweet, and they hooked me up with a corner room with a view. (i guess i'll settle for a hospital partition since the corner office isn't in the cards anymore!)
here's the best part- the chairs had a massage button option, AND various levels of heating. all at the click of a button! my mom got the guided tour (i was too wiped out, i basically passed out in the chair once we got settled) and came back with snacks. there were sandwiches, chips, drinks, hot chocolate, coffee- anything you can think of. oh- and your own personal TV (with headphones) that extends out from a huge arm attached to the wall, wireless internet, and even portable DVD players you can check out. out of nowhere came a nurse with a digital camera (damn those paparazzi- they never leave me alone!)- they wanted my picture so that they can learn who i am, and identify me in the future. i was so impressed!
so now i'm back at the ranch, where poor mom has 2 patients to deal with. dad had surgery last week to take care of the prostate cancer- he came home from Fox Chase Cancer Center in Philly on saturday evening. his recovery continues, but he's not very comfortable and is having some unpleasant side effects from the operation. i'm acting as a drug consultant and medical specialist, much to his appreciation ;) thank you to everyone who was praying for him (and us), and who have requested an update on the situation. we'll find out officially on tuesday if the docs got all the cancer, but the prognosis is positive.
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