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.

Operation: Insomnia

many of you are familiar with my wacked out sleeping patterns- i've been sending emails at 3am for years now. (shout out to my fellow sleepless comrade, chad, and our 2am IM chats!!) i've tried to remember the root of the insomnia, and i'm sure it traces back to my workaholic nature when i was first navigating the "professional world." working for an undercover robot who was fueled by black coffee and diet coke for a boss didn't help matters. sick days didn't exist, and leaving the office at 8pm was calling it an early night. and so the pattern began... besides, i like to think i am at my most brilliant when i haven't slept in days! (or maybe that is the delerium.)

aware of this bad habit (which isn't really a habit, b/c i can't control it), my internist referred me to a sleep specialist- who knew there was even such a job?! the first order of business was to take a sleep test, but the earliest appt was in April. after being teased with a solution to my zombie state, that was almost cruel! i pleaded a bit with the scheduler, and she mentioned they were having trouble getting ahold of thursday night's patient. apparently the phone # was disconnected or something- i was put on "standby" and told to have a bag packed. (i felt like like i was having a baby or receiving an organ transplant!) i got the call at 8pm on thursday evening to come out to geisinger (oh, good old geisinger, you've missed hearing me talk about that place, haven't you?), so we rushed over.

so this is what went down on thursday night. but before i let you in on the intimate details, allow me to briefly pontificate upon this premise. i'm having the test done b/c i have a severe sleep disturbance. so the techs and doctors are going to analyze my sleep overnight, monitoring my oxygen level, limb movement, heart rate and pulse, by hooking me up to hundreds of electrodes and videotaping my slumber. there i am, with an oxygen tube up my nose, wires superglued to my head and around my face (not to mention on various other places on my body), and i'm supposed to "sleep exactly like you would at home!" gee, this is totally how i'd prefer to sleep, as a human motherboard of blinking and beeping lights!

my "bedroom" was the same size as a normal hospital room, but there was a sofa, armchair, desk, and full bathroom with walk in shower. the bed, thank god, didn't have those horrible hospital bedrails, and was even a double! the best part of this gig was a beautiful flat screen tv mounted against the wall, and the bed had a fancy remote control to raise up/down, even a "back massage" button. (that feature was more like a porn star vibrating bed than a back massage- not that i have been in a porn star bed, but that's what i think it would look like! hah!) it felt like a bit like summer camp- "lights out" was at 11pm on the dot, and they weren't joking around! i tried to plead my case with the nurse/tech, explaining that i have bad insomnia and could i maybe read or watch tv until i fell asleep. she wasn't having any of it, but by 2am and i was still wide awake, she started to believe me. i wound up catching a few hours of sleep here and there, but at 5am i couldn't take it anymore. i think she had taken pity on my by this point, and i was "allowed" to officially wake up. i turned on the news while she started the laborious process of extracting the endless wires from my hair, which felt like they had been superglued to my scalp. it was not a pretty picture when was all said and done. (imagine a scene similar to "something about mary", the one with the hair gel... yep.)

around 7:30, one of the doctors from the sleep center (a neurologist) came in to review the tests taken during my sleep study. i wasn't entirely surprised with the findings- there isn't any serious problems with my oxygen intake, or evidence of overnight seizures, or sleep apnea. i never went into REM state of sleep, which is indicative of insomnia, but yet again, i wasn't surprised with this finding either. he was super smiley, and we had a lovely chat about the various elements that influence sleep (being a neurologist and familiar with ms, he was gracious as i slurred and stuttered my way through our conversation). now that we have the hard data from the study, he seemed very confident that my sleep doctor could work with me to eliminate the insomnia. to be honest, i'm skeptical, but willing to give it a shot.

i have to say- i'm thrilled that i didn't have to wait until april to do this ridiculous stunt. (i'm even willing to go so far as to say i've had a better night sleep on the floor of someone's dorm room!) i'll keep you posted, but here's one easy way to keep tabs on my progress- check the time stamp of my emails! hah.

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

http://meggerv2.blogspot.com/

gettin' by

remeron update: it has been almost 1 week since i started the new med, hoping to lower the intensity of my intention tremors. today, particularly in the morning, i felt an improvement. i was able to put on my own shoes, tie my own laces and even brush my teeth without ramming the electric toothbrush up my nose. ahhhh, that improvement, that tiny little speck of hope, it felt so good! i was trying to cherish it b/c i have learned those moments don't come frequently. and sure enough, as the day wore on, my condition deteriorated back to the intensity and frequency of last week's struggles.

i was ever so gently reminded of this when i almost fell down the steps, my left leg jerking out from underneath me and the right refusing to stay in one place on the stair. i gripped onto the ledge of the wall and slid (well, dropped) onto my @ss, my heart pounding from the close call. quite humbly, i swiveled myself around and worked my way back to where i came from- which required dragging myself up one step at a time, like a baby learns to navigate stairs for the first time. i did have some assistance in this endeavor- both maddie's came to my rescue. madeline, the cat, FLEW down the steps and screeched to a halt on the landing. meowing, she positioned herself directly behind me, looking up at me like "i got your back girl". then madisen, the dog, decided she would lend a hand- literally. she positioned herself directly in front of me, on the top step, pawing the air repeatedly. one paw, then the other.

hopefully my next remeron update will be with some lasting progress...

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