one hour closer

we are quite a few hours closer to a cure after the success of this year's Cure Crew fundraiser. to say success is actually an understatement, since the event generated more money than ANY of the previous years, and attendance was through the ROOF (or, well, basement since we were in the bottom bar). for those of you that have been living with a paper bag over your head, i am referring to the Cure Crew's annual MS Walk fundraiser at rhodeside grill in arlington.

since i'm not a DC local anymore (sniffle, sniffle) most of the planning for this event always falls on k8 and karen, who of course knock it out of the park. i don't know how those 2 keep topping this event each year but they DO. we had acoustic performances by a woman that plays soccer with karen, and a couple of the guys from wes tucker & the skillets (who have so graciously offered their entertainment for past fundraisers). the raffle prizes were pretty major also- washington wizards tickets, an iPod, some delicious food joints around DC. and the turnout was SO SO FIERCE! (love this phrase, thank you christian <--love him!) we had over 100 guests and made over $1640!! can you believe that?! in one night! man, it makes you feel good.

i had decided at the VERY last minute that i was going to attend the happy hour. i asked (err, announced) k8 if i could crash on her futon, and because she is a saint, she agreed (even though it was one of her busiest weeks of the YEAR). i don't know how, but she even managed to stock the fridge with gluten/dairy free food!! so, i booked the bus ticket and was on my way at 8:30am on thursday. traveling put me a bit out of sorts by the end of the day. as much of a city girl as i am, it's still a bit of culture shock when you step onto the bus in the middle of quiet, quaint, & deserted downtown Lburg and step off the bus into the hot mess known as northeast DC.

but i didn't have long to ponder the change in scenery. i had to quickly put on my game face and grab a cab driver- those DC cabs always rip you off with the insanely stupid zone method of determining fares. after i gave him explicit directions on which way to cross over into arlington, i settled back into the cheap leather seat and looked out the window to see what i had missed over the past few months. honking, stoplights, pedestrians, government buildings, tourists... nothing amiss. during the drive, he assured me that he does not drink & drive (comforting to know as he cuts people off right and left), and does not approve of people that do. i have no idea why he felt the need to share that with me, but the world's a better place with one less drunken cab driver.

k8's place always smells like a flower & candle store, and there is always a new addition to the decor each time i visit (she always says "my apartment is finally the way i want it." famous last words!) but by the way, that girl can do more with 382 sq. feet than martha stewart on steroids. my legs were screaming at me to give them a rest, and my feet were swelling their way out of my flats, so i was luckily able to rest for a bit before the event began. thank god. i was going to need all the stamina, strength & energy i had to get through the next 5 hours. the walk always brings in a varied crowd- old friends, new friends, work friends, neighbor friends, kickball friends, MS friends, and all of their friends. so it's a constant "hey!" "oh hi!" "holy shit i haven't seen you in ages!" "omg hey!" "hiiiiiiiiiiiiiii!" "hey girl!" "oooooo! it's so good to see you!", lots of hugs and a few trademark girl shrieks... get the picture? it is total sensation overload, a little overwhelming and utterly exhausting. (although i think my eyes might have glazed over at various points.)

i'll let you in on a secret tho... i have some anxiety issues when it comes to seeing people from my "old life." i'm not sure what they expect, and i don't want them to feel awkward or uncomfortable. i also don't want people to lie to me b/c they think it will make me feel better. i worry that the bits of jealousy will creep up on me, envious that they have these real lives that are going places and accomplishing things. i worry that i have let them down, that i haven't been a good enough friend. i go through all these things in my head (repeatedly) and end up overanalyzing into a bigger, fabricated deal than it really is. so that's the emotional part.

as far as the physical issues- i had "warned" quite a few people that i was having difficulty speaking, and just to bear with me. (i should call it "my meg disclaimer" hahah.) but i must have had some karma cashed in because i was able to hold basic conversations without pulling my hair out in frustration or running from the room in embarrassment. i did try to set up camp in a group of 2 tables by the door- 1) to help k8/karen take money, hand out raffle tickets & tshirts, and 2) so that i could stash my cane away in a corner and use the table/chair as support. for the most part, i was able to keep to that strategy. luckily, the downstairs bar isn't that huge, so i was able to see everyone at least once amidst the chaos.

on the bus drive back, i had (a lot) of time to think. (which was proving difficult since a woman 2 rows back was talking on her cell phone the ENTIRE TIME at a volume that was totally uncalled for in a small enclosed space.) i think it says a lot about my friends- their integrity, their character, their loyalty, their compassion- from their participation in this event alone. i guess it is generosity that comes to mind the most. generosity in any amount or form (whether it is your time, or your money, or your talent) is such a simple idea at its core, but it's something that i am not sure i portray every day. and isn't that what your friends should do- make you a better person than you would be alone? so i think this event always reminds me of that.

my mom used to say "you are who you hang around with" and it used to just grate my last nerve! (sorry mom!) but she was right. she was totally right. and if i am even a fraction of what those people represented last thursday night, i consider myself pretty damn blessed.

tom, steve & ashley

wil & his UNC gfriend (he finally learned!)

fran, meg & kathryn

kelly & lori

robert & company

meg & candace

remember, you can view these postings directly on kit katchat's blog

http://meggerv2.blogspot.com/

a reminder

if any of you watched 60 Minutes this sunday evening, you were lucky enough to see the same segment i did on a man named Stan Brock and his organization, Remote Area Medical. (if you didn't, a video from the segment is below, and you can click here to be taken to a recap of the 60 Minutes report.) i'm also willing to bet you saw the segment through watery eyes, watching admiringly as volunteer doctors, dentists and nurses treated hundreds of people, for free, over a recent 2 day weekend. (okay okay, if you are a tough, manly man you might not have shed actual tears- but you wanted to, i know you did!) but unlike the name suggests, this wasn't in the slums of Ethiopia or Cambodia or Mali. in fact, this wasn't anywhere Remote at all- it was in Knoxville, TN.

(i couldn't get the video to embed, so please click here.)

obviously, health care is close to my heart (duh, this entire blog is dedicated to it), but it's not just for personal reasons. yes, having had recent years of medical trauma is part of it and most likely spurred it. i'd like to believe i would be as passionate without all that drama. regardless, it has served as a platform to realizing how precious health care really is, and how privileged those are who have access to it. and i use the words precious and privilege specifically, because the basic concept of medical insurance is quickly losing its place as a norm in the life of your average Joe. most likely, you or someone in your close family is without health insurance. for any of you that have ever been on the receiving end of medical care, for treatment as minor as a bad migraine to as major as open heart surgery, the thought of NOT having an option to get help is quite frankly terrifying. as i watched the endless line of people snaking through the parking lot, my heart really went out to them. some of them had not seen a doctor in 5, 10, even 20 years- even though they were living with previously diagnosed conditions that had gone entirely untreated. at the end of the weekend, RAM had to turn away over 400 people. people that had stood in line for hours in the bitter winter cold just for a chance to possibly see a doctor. but here's the kicker- these hundreds are only a fraction of the over 42 million Americans who are uninsured (and we're not including those who are under insured- which can come with such high restrictions that it can mirror being uninsured altogether.)

i will be the first to say that i do not know what the answer is. i know the reasons why (rising cost of private insurance, bad economy, loss of employment, etc.) but that's where i reach a dead end. smarter men (& women) than i have surely tried to address it, not just in America but on a global scale. but the thing is, you should never have to choose between your rent, and your health, or the health of your children. especially not in a prospering, wealthy, and resource-rich country like ours.

people like Stan, and the hundreds of nameless volunteers, are literally lifesavers, and i am beyond thankful that they so freely give up their time, money, and skill to help. it makes me a little less scared about the future of health care in this country, a reminder of the human spirit and general goodwill of others. it also makes me count my blessings that i am dealing with a disease within an incredibly generous circle of supportive friends & family.

sometimes i wish that i could be more like a Stan Brock- i believe that i equal him on a passion level, but on the action side, he well exceeds even my greatest efforts. i honestly do have these debates with myself- where can i fit in? how can i help? the problems seem so big, so overwhelming, so insurmountable. so i turn to what i have always turned to in questions of direction, and that's education- not exclusively in an academic setting, but more of a life setting. you know that smarmy cliche about how knowledge is power? it seems so simple, doesn't it. but it's true. my thinking is that if i can educate myself about the problems facing people as far away as Africa to as nearby as Altoona, then i can educate others in turn. and hopefully, that cycle continues. sometimes i get so wrapped up in myself that i can't see further than my own challenges. it's stories like Stan Brock's that thankfully jolt me back to reality. i know it sounds a bit cheesy, but i can only pray that one day i'll be able to be more hands on, and actually make a direct difference...

my biggest hope of this posting would be that you are motivated to seek out opportunities and venues to help people in need of medical care, whether it is through RAM , or your own church, neighborhood, school, and workplace. but i do have a few other hopes as well. i hope that you keep health care in mind at the ballot box as you make your choice for a presidential candidate. who has experience with it? who has the guts to make the radical changes necessary? who has a plan that is high on their priority list?

i hope that you take this moment to become more educated about your own health care resources- what's covered, what isn't, why not. for example, at one of my earlier agency jobs, i chose the free HMO plan offered by my employer. why? well, why not? i was young, making no money, and naively healthy (and would rather spend the $50/mo on shoes or wine.) but then i was diagnosed with MS. unfortunately those 3" stiletto heels weren't going to pay for required visits to specialists, or exchanged for the $100+/mo costs in prescriptions. i could switch to a PPO with access the recommended doctors outside my network, but the insurance company had strict rules on when you could change your policy. those 6 months were quite scary, to be totally honest with you. it cost me (and dad) quite a lot- not only monetarily, but in the quality of care i was able to receive. (ah, those were the days of hanging IV bags of solumedrol from wire clothes hangers off my lampshade... elle & k8 probably remember that quite well!) golden rule people: it is always worth the extra money when it comes to your health. (ok mini lecture complete.)

but my last hope is this. i hope every one of you that reads this posting knows how truly thankful i am for your support, how appreciative i am of your friendship, and how much your letters, prayers, visits, thoughts, and emails mean to me.

remember, you can view these postings directly on kit katchat's blog
http://meggerv2.blogspot.com/

swimcaps & yoga mats

there was a major achievement this week. are you ready? can you handle it? wait for it, wait for it.... i braved the pool @ BU for some "aqua therapy" (of my own prescription.) although i can't take all the credit- i would not have had the guts to go out there if Jana hadn't gone along with me. every neurologist and internist i have ever seen (and we all know there are a lot) has said "get in the pool, that's going to be the best exercise for you. you really need to be swimming". the advice is all fine & good- in theory. the reality is that most gyms with indoor pools come with memberships of a trillion and five dollars a month.

BU has community memberships that allow access to the school's recreations and athletics facilities, including the pool (among many other things.) we have a family membership, which gives me blanketed access, but i have been too chicken to go alone. i know, i know, i'm supposed to be ms. independent and all (shhh, don't tell that my facade is cracking!), but those young, lithe college kids are intimidating! they make me feel so old! i worked with one of the membership/facility directors and was able to score a semi permanent guest pass for Jana. (to be honest, i used the MS card, something i NEVER do. i could probably count on one hand the number of times i've busted that out.) but it was for the greater good, since her neurologist has been suggesting swimming multiple times.

so, i dug out my swimsuit from the verrrrrrrry bottom of my trunk (i think there was dust flying off the straps) and layered up in sweatpants, tshirts, sweatshirts, hoodies, hat, gloves (it's like 8 degrees here lately) for our initiation into the orange & blue lanes of the kinney natatorium. unfortunately, the facility is about 3 miles from the parking lot, so i was struggling before we even got into the locker room (which is about the size of my apartment- no joke. the field house locker rooms are typical college size monstrosities, but lies on the other end of the facility.) when i'm nervous or anxious, my tremors increase dramatically, and i felt my knees shaking as we walked out on the cold tiles. jana helped me down the floating steps into the QUITE cold water. damn, it was chilly. we decided to suck it up and submerge completely, but i still couldn't shake the shivers off. we shared the lane, walking up and down the lengths talking and venting.

notice how casually i wrote that. we just walked up and down the lengths... i was WALKING. not gracefully, obviously, but my legs were submerged, no one could notice. the feeling of being able to not clutch onto a cane or an arm, was honestly exhilarating. the water felt wonderful (even though i was still a bit cold- we weren't swimming laps so didn't get a chance to work up the body temperature.) and i marveled at the fluidity of my movements in the water. i could feel the workout in my legs as they plunged forward through the water's resistance. jana had to show off and swim 4 laps- mad props to you girl!!!! (hopefully she didn't pay for it later.) before we knew it, 40 minutes had passed! we continued for another 5 to even out a solid 45 minutes, and headed towards the floating steps to climb out of the water.

i hesitated before the railing. i didn't want to step up there. my legs were working in the water, and i knew the moment i stepped on that cold tiles, my legs would stop working. i felt jana kind of push me towards the steps, mainly to help support my body as i pulled myself up. the second the first droplet of water hit the floor, my legs started to shake, and my arm unsteady as i grabbed my cane. just like that, i was back to the real world. my guess is that jana's thoughts mirrored some of my own, proud of herself for pushing just a bit further, for taking some control back from the MS, but also a bit of sadness that she was returning to her current challenges. we had taken mom along for moral support (and perhaps physical support, if needed! which you never know with 2 balance challenged MS-ers!) so the 3 of us traipsed back to the closet of a locker room to strip off our wet clothes. ugh, i had forgotten how hard and uncomfortable it is to peel a tight wet bathing suit off your skin!!

but enough about the logistics. the point is- we did it. we braved the pool. we are aquatic masters, the champions of water therapy... i really felt a sense of accomplishment. we're going to try and go 2x a week, which is realistic for my capabilities at the moment since i live in fear of falling and cracking my head open. tomorrow is the first day of yoga in the new winter session! it's my yoga time with the white haired ladies of Lewisburg- chair yoga which is very gentle and easier for elderly people with arthritis and various other ailments. i'm the youngest by about.... 40 years. jk, kind of- there's a couple ladies who might be in their 50s! hah! we seem to be getting these random spurts of snowstorms only on fridays, which is yoga day, and a couple classes were canceled. (i don't know why, sometimes i feel like i'm living in NC again with the freak out factor of impending "weather.") then there was the usual 2 week "break" between sessions, so long story short- i haven't had chair yoga in over a month! so it better not snow this morning.

since it's 12:59, and my required bed time is 1:00am from my new sleep doctor, i should sign off. i don't want to miss curfew...

remember, you can view these postings directly on kit katchat's blog

http://meggerv2.blogspot.com/

hard to hide the disappointment

i've been in a holding pattern with the essential & orthostatic tremors- taking the valium 2 or 3 times a day to quell the tremors, and crossing my fingers that my voice will hold through a short phone conversation. two weeks ago, when the episode was at its height, i was under the impression that the valium was only a temporary situation, and i would be referred to a movement disorder specialist (someone beyond the specialty of my neurologist). geisinger called shortly after that appt to schedule a battery of tests for today, in a separate part of the hospital. i just assumed that it was with said specialist, and have been trying to reserve judgement on any improvement (or lack thereof) until today.

when i received the automatic email reminder from the hospital system, it included directions to the lab, and i noticed it said "pulmonary function lab." i frowned, thinking, that's odd, pulmonary has to do with lungs, that's quite a stretch to include movement impairment. but by the time i questioned this, it was sunday afternoon, and i convinced myself that perhaps these specialized tests just happened to share the same department as the pulmonary lab due to renovations. it doesn't take a genius to figure out there was some Freudian id/ego/superego conflicts underlying that assumption. i had been "dealing" with these recent issues by telling myself "just get through til the 25th, and the new doctor will be able to help."

so when that didn't happen this morning, i couldn't hide my disappointment. to be honest, i cried. and a part of me felt really stupid. like, come on meg, how many times have you been around this block by now- being let down by doctors and the whole damn health care system. mom called around to the neurology department trying to find some answers, but we didn't get any answers (at least, well-informed answers.) but i did the pulmonary tests like a good little lab rat, and rode the wheels of embarrassment (aka wheelchair) to the other wing of the hospital to internal medicine to meet with the sleep specialist as scheduled.

i tried to focus on what he was saying, and tried to have a positive attitude. but, i was struggling to keep it together, and I had to stop myself a few times from snapping at him. the findings of the sleep study weren't breakthrough discoveries- i have PLMS and chronic insomnia. it does not take a rocket scientist to figure that out. (i'm leaving out lots of details b/c they will bore you. they did me.) PLMS is actually quite common- most people have periodic limb movements when they sleep and do not ever notice them, they are so slight. (they usually take place during non REM sleep- since i rarely go into REM, i tend to have more of these than most people would.) mine are a lot stronger than your typical limb movement (they used to be freakin' 7.0 Richter scale level, i would practically launch off the bed- k8 can testify to that!) and do wake me up throughout the night. while these aren't the cause of the insomnia, they certainly haven't helped the situation.

anyway, this doctor wants to regulate my sleep cycles, which he starts by establishing a set time when i go to bed, and a set time when i wake up. he actually went so far to eliminate my naps, but that did not fly. so we bargained, and i got 1 hour. but now, i'm anxious as hell watching the clock- oh my god, i'm supposed to be asleep now. oh my god, i can't be sleeping now. AUGH! (so my office hours are the following: bedtime is 1am, my wake up time is 8 am, and my naps are from 1-2pm. please adjust your schedules accordingly.) i'm also not supposed to sit in comfortable chairs or sofas during the day (ever), and if i feel sleepy during the day i am supposed to stand up and engage in some type of physical activity. here's the thing. honestly, i do want to help, even cure, my insomnia, i really do. but i don't know if i can do this. especially now, dealing with the tremors, a) the valium makes me feel muted and a bit drowsy, and b) they make it difficult to do almost anything, which is exhausting. i don't want to sound like i'm making excuses, and normally i give everything a shot.... it's just, it will be hard. i leveled with him though, and i think he does understand. so we'll see.

the speech therapist called today to schedule an appointment, so at least we are moving forward with dealing with the mouth spasms. but the movement disorder specialist is in wilkes-barre, which is about an hour away, and the treatment is through a physical rehabilitation program. i don't know if that is the right option- it sounds like physical therapy and we've already been down that road. the end result seems to be- this is just your MS, and this is what's going to happen, and that's that. and you know what? that's fine, it really is. i just wish i hadn't gotten my hopes up for something else- what i thought that "else" would be, i'm not really sure. i just hate this feeling of helplessness about the situation. patience is a virtue... that's for sure.

remember, you can view these postings directly on kit katchat's bloghttp://meggerv2.blogspot.com/

knock on wood!

today i had an opthalmologist appointment, and i was dreading it. not b/c i have an irrational fear of eye doctors (actually he is quite good looking, even borderline hot!) but b/c they have irrational waiting times. it is normal to spend TWO HOURS in the various waiting rooms before you are seen by the doctor. which btw, seems to be the newest "trick" these days.

here is what happens: they call your name vaguely on time, so you're thinking "alright, only 10 minutes late, this isn't bad." and you follow them down a long corridor into a closed room where the nurse chats you up...so how much snow do you think we'll get, yes my left eye feels like someone is stabbing me with a steak knife, no i'm not from this area. a good 5 mins or so of conversation and she pretends to be writing detailed notes in your chart. again, progress. then, she then takes you out of the room and down another long corridor into a second waiting room. but you feel like you're making progress because everyone else is still in the first waiting room- you have a leg up on the competition. so you sit there for awhile, and more and more people join you in what is starting to resemble a holding pen of cattle. finally, a different nurse calls you and leads you back to yet another closed room where she deposits you to wait for the doctor.

well, i have news for you, you devious, calculating doctor's office staff- i can't be fooled! i'm on to your tricks! (good thing there are lots of old people around here b/c they are gullible enough to fall for it- hook line & sinker!) but, in this case, i really don't have any room to complain considering he is seeing me at his own expense. (PAC- which is PA's form of medicaid- doesn't reimburse the practice the whole amount it actually costs for the services. so, the practice doesn't participate at all in the PAC program since it is literally costing them money to see their own patients. it's really political and i honestly don't get all the details. what it boils down to is that he is a really nice doctor who seems genuinely concerned about my eyes and the effect MS has had/will have on them.) but i'm still on to their waiting rooms/exam rooms scam...

the best quote of today's experience was when mom called at 2pm, "how late is the doctor running today? we have a 3:30 appointment." the receptionist answers with "as far as i know he's on time, he's not usually late!" (somewhat indignantly.) i almost fell off the chair laughing when i heard that one. she must be new.

but let's get down to business. there's some good news! my appt today was to review my visual field test that i did in january (aren't those the worst? talk about annoying and monotonous.... sometimes i just want to randomly click the damn thing and take a nap.) see little diagram on the left. the doc compared it to my last visual field at my VA opthal from the spring, and guess what???? my right eye's field of vision shows remarkable improvement! i gained back some of the peripheral vision i had lost (due to MS related flares.) there are still blind spots, but the difference in test results (they graph it in a circle type fashion with dark areas being bad, ie blind spots) was striking. i almost didn't believe what he was saying- we never get good news on test results! (well, it seems that way.) my left eye remains unchanged, the same blind spots i have had ever since the case of optic neuritis years ago. i don't think that one's comin' back. but at least it hasn't worsened, and i'm THRILLED with the improvement of my right eye.

so....... you know what this means? that as soon as i can get these tremors and spasms under control, i might be driving Carlisle (my car, for those of you that don't know) around town in the near future! i might even put on a little n'sync, which is his favorite cruisin' music!

remember, you can view these postings directly on kit katchat's bloghttp://meggerv2.blogspot.com/

national ms film festival

the national ms society sponsored a film festival in late 2007, encouraging people that have ms, or have a loved one with ms, to submit 8 minute mini documentaries featuring their take on the disease. the films are fascinating b/c the people are as varied as the disease itself- which isn't merely a coincidence. (you can view all of the videos on youtube here.)

one of the films stuck out from the others for me, and it is the one i want to share with you- kristie kent's "the show must go on". she took her ms on the road, by asking random people at shopping malls and airports to slip into an "ms costume". the costumes were meant to demonstrate the invisible symptoms that afflict those with ms. some of the props included a flipper, high heel, thick belt, warped glasses- representing foot drops, balance problems, the "ms hug", optic neuritis, among others.

even my closest friends & family do not understand many things about this disease- and not for lack of trying. it's hard to explain, it's difficult to show, and more than anything, it's not something you can experience first hand. education and awareness is how we can fight this disease. i hope you are moved by this film (and the others) as much as i was.

remember, you can view these postings directly on kit katchat's blog
http://meggerv2.blogspot.com/

can i please finish a sentence?

here is an example of what comes out of my mouth when i attempt to have a conversation:

"yeeshhsshshhhh i- i- i, mmmm, umm, need thoo make an appomen for a, um, um, beeeekenee waxsh." then my mom usually takes over the phone so that the person on the other end can actually understand my request. the words are there- i can hear them in my head! i can see them in my head! my uncooperative selfish little mouth refuses to form them out loud. i just want to PUSH it out of me. it's the most frustrating thing in the world. esp for someone that is constantly sarcastic and has a natural curiousity to be a part of the conversation. sometimes i just give up, and wave my hand like "oh nevermind."

my friends are great, and i'm really lucky they understand what i'm up against right now. but it doesn't make it any less embarressing. i'm not trying to say i'm a genius or anything, but i enjoy talking with people. how's your day? what happened at school? what's going on with that hot guy from 10am open swim? how do you feel about barack obama and oprah? did you receive yellow or red roses for valentine's day? but i can't have these conversations because

i. cannot. talk. i. cannot. complete. a. sentence.

ok, i'm done venting now. i am going to bed. all my attempts to sound normal at dinner tonight really wore me out.