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.

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 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.

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.