reflections

i can't help but compare this year's holiday against the one in 2006. i do so and honestly cannot remember much of last year's. no, not b/c i was sloshed from all the eggnog and champagne spritzers (that was soooooo 2004), but my health was so vastly different. i remember sleeping... a lot. christmas morning was a blur- i know we opened presents and had a late brunch, but what else did we do? watch a cheesy holiday flick? go to christmas eve service at church? call relatives across the country with holiday cheer? did any neighbors stop by?

it's much easier to compare progress when it is marked by a specific time period. holidays, obviously, are one. and this holiday is the first in a long time that i honestly feel physically better. it's such a good feeling. i can literally sit here, reflect on that, and be perfectly content- b/c it's that rare for me, and i know it will be fleeting. dr. adam's words still ring in my ears- "i wouldn't be surprised if it took you a good 1-2 years to recover from this, if you fully receover from this." i can say with confidence (knock on wood) that i'm past that 1 year mark.

when you wake up in the morning, do you do a mental assessment of your state of existence? maybe this is just me, since i have been known to have a few (endearing) quirks (errr, neurosis?) but when i first wake up in the morning- the immediate moment when i realize i am awake, i have a little conversation with myself. ok, what's hurting and how bad is it? what will i try to do today? what is going to be my limit and where i am going to hit my wall? (i used to become completely overwhelmed during these intimate chats, so i had to put the kabash on them temporarily.)

but now those same conversations are not so overwhelming- i look at the challnges for the day, and they seem more manageable. i can see that light at the end of the tunnel. i'm still working towards my pipe dream of learning how to ballroom dance. side note: for those of you that don't know, i'm slightly obsessed with DWTS- that's "Dancing With The Stars" for the non-acronym friendly. so if i miraculously fully recover, to the point where i can walk like a normal person, or even a half normal person (hey, Heather Mills did it and she has half a leg!), i'm going to take ballroom dancing lessons. yes, laugh now- laugh all you want. we'll see who's laughing when i worm my way onto Dancing with the Stars (or a bar mitzvah. you know, whichever comes first.)

something i am able to finally do this year is go out to dinner... at a restaurant... in public...with other people... and enjoy myself! tonight, i was taken out on the town by my good friend stacie and her husband josh (technically, josh was responsible for the invitation- my insider opinion is that he was trying to score a date with 2 hot women, not that i can blame him!) we went to Elizabeth's, a little bistro downtown across from the old movie theatre. we laughed a lot, i ate real food (spinach salad with walnuts, dried cranberries and warm pear, follow by an entree of salmon with tomato/fennel, clams and shrimp), and even had a glass of pinot grigio (without getting sick!) i participated in the conversation, we bitched about ms and the ever increasing stupidity of others, and even spoke clearly 99.5% of the time! i put on makeup, and wore real clothes (even convinced mom to let me borrow her dark rinse skinny jeans for the occasion). clearly i haven't had a date in over a year- is it that obvious??

i was really on a roll, so decided to extend the evening by inviting them back to the house (where we could be entertained by dad's new lava lamp and the burping golden retriever). but i think i had gotten too carried away, so i had to un-invite them once we got home- i had hit my wall of exhaustion! random side note- does anyone know about the monkeys in lewisburg? i have not seen this for myself, so for all i know josh could be perpetrating lewisburg lore and i am incredibly gullible. but supposedly there is a cage of monkeys (yes, like the armpit screeching mammals, not the 60's boy band) by the entrance/exit of the tunnel under highway 15 to/from Bucknell's campus. i'm going to check this out in the daylight tomorrow, and will report back.

so to recap on tonight's blog, i'm in a much better place than last year at this time. and what more could you really ask for? besides monkeys, but that's a whole other story.

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

3rd time's a charm

i was introduced to a new drug this past week- it will be my 3rd disease modifying drug, so let's home the old adage holds true... 3rd time's a charm! the medicine i am now taking is called copaxone, and is a daily injection (boo!), but here's the best part- it's not an interferon! so the side effects should not include the awful "flu-like symptoms" the day following the injection (which is what betaseron is known for, and caused me incredible discomfort and exhaustion for 2 years.)

the pharmaceautical company has inundated me with marketing information over the past few weeks (the money they spend on the collateral and support material for these drugs must be astronomical- i guess is reflects the money they make off the drugs.) then, everyone from the insurance department to the specialty pharmacy started blowing up my cell phone. i swear, i called someone back from shared solutions (pharmaceutical company) at least a couple times a week. they also assigned a nurse to do a home visit, when she would teach me how to inject the medicine.

shelby came over on thursday afternoon, and i was lucky she likes animals (especially golden retrievers), b/c they were swarming all over us! madisen (the dog) thought she was there just to see her, and madeline (my cat- the "not as fat" one) was doing her usual protective hovering, trailing me everywhere i went. i've done subcutaneous injections before, as that was the format betaseron is in, so i knew the basic steps. my tremors seem to have settled in for the long haul, so i had more difficulty grasping the injection device- finite motor skills are proving difficult. the autoject is almost identical, even tho the needle is a little smaller, but it makes that familiar trademark *pop* when it goes in (the sound is worse than the shot itself, in my opinion.)

what i wasn't expecting though, was for it to HURT like hell for about 30 minutes after the injection! it felt like i was being stung by an entire royal kingdom of wasps!! i thought, well maybe i'm just not used to injections anymore. after all, it's been almost a year since i stopped the betaseron. so i tentatively ask shelby, "um, is it supposed to hurt like this?" her response? "oh yes, it will be like that for a couple minutes. just press the cotton ball against the injection site." i kept pressing, but either my sense of time is totally warped, or it was way longer than 2 minutes. it was burning, and stinging, and just overall incredibly uncomfortable- i could feel my face twisting into various positions as i tried to pretend it wasn't that bad.

a couple hours and a lovely red welt later, my leg was back to normal, no worse for the wear than it was earlier that morning. the whole experience really wasn't that bad, and i'm probably venting more than usual only b/c i'm reliving it. i just hope that i won't develop horrible anxiety about doing the shot each time. that happened at times with the betaseron, and that injection was every other day. with this being every single day, i'm a little nervous that i will start brewing a sense of dread hours in advance. but, some diabetics have to give themselves shots 2-3 times a day! if they can do it, so can i. not to mention that this medicine is crucial to (hopefully) halting the path of further disability that my MS is taking. so, really, i can't complain. (until tomorrow when i start whining about it.)

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

going south for the winter...

as i write this, there is a blanket of snow outside my window from the traveling snow/ice storm that went thru Lburg yesterday. we're supposed to get over 6" tomorrow, which should add to the festive holiday spirit. snow and christmas always go hand in hand. or, at least, ideally. elle sent me a package this afternoon- i left my beloved fingerless gloves at her mom's house- and her letter described the weather as 80 degrees and sunnny!! i mean, what the hell is that about?! even though it took 9 hours of layovers, delays, and airports, i had never been so happy to be back in PA. one thing that doesn't work for me is the damn heat.

a few weeks ago, joe & hodges (reference: the couple i went to france with, and practically my second set of parents) could tell i was getting cagey- i really needed to get away for awhile. change of scenery, all that jazz. the trip (aka meg's snowbird vacation) was fantastic- i couldn't have asked for better hosts and hostesses. everyone went out of their way to ensure i was comfortable, and were so understanding of the limitations my fatigue puts on activities. i was reminded of how much i miss my friends and the familiarity/comfort that can bring.

as far as the air travel itself, i was pleasantly surprised at the assistance of airline and airport personnel. i was originally hesitant about the trip mainly b/c of the anxiety of literally getting to the airplane. you know how massive airports can be- the gate for your next flight is practically in another state. the entire airport should have its own zip code! and then there's the staring, which i still struggle with. yes, i am young, walk slowly and sometimes awkwardly, and have a bright blue cane. and yes, i will use it to bat you over the head. but compassion from others can sometimes surprise you- during every flight, people helped me with my luggage, my coat and cane, and maneuvering down those tiny aisles. i even had a brush with fame- twice! (but that's a whole other story, for another time. i already have too much to blog about today.)

my health on the other hand, was not as cooperative. the travel itself wore me out (as it can anyone who travels in the chaos of holiday airfare) and required frequent naps throughout the day. but my speech continued to worsen over the course of the week. i have had problems with my speech off and on for the past 8 or 9 months, but people can understand what i am saying. however this time, the slurring and mispronunciation of words was so pronounced, that it was extremely difficult for others to make out my statements. i kept thinking it would go away, it would lessen- maybe i needed a nap. but that evening, when it still hadn't lessened, i started to get scared. by this point, my tremors/shaking had increased as well- i couldn't put my earrings in, button my jeans, sign my name, turn the pages on a book. my legs joined in on the act also- they were shaking at a level of intensity i had never experienced.

and then, i had my first fall. yes, we've all fallen before- off our bikes, off a porch, out of a car (jk). we've all tripped over a brick or missed a step. i've had times of such weakness that i stumbled or slammed into a wall. but never outright fallen. i had decided to take a shower while hodges was out running errands (right away- bad idea- someone should always be home) and fell out of the shower. no, seriously, OUT OF the shower. i landed on my back, on the hard tiles of the bathroom floor, and could still feel my legs trembling. i remember thinking "okay meg, you had your first fall. now that's over with." i guess i got carried away with my independence- being able to travel alone, etc. so the shower was a bad decision, and i learned my lesson, even tho it's a blow to my ego.

i emailed my MS nurse practitioner, telling her about the situation, and how concerned i was. she called my cell phone later that day, and asked me what was going on. the speech impediment was blatantly obvious, as i struggled throughout the conversation to share my symptoms. she blew me off. her exact quote was (in a snippy tone) "what do you expect me to do about this? you're in north carolina." i was speechless (which worked out well since i couldn't talk anyway)- these were major flares, and she's telling me to "rest"? are you kidding? then she said that the slurred speech wasn't due to my MS (ok, i'm not even a doctor, and i know that 40% of MS patients experience this during the course of their disease).

the conversation went downhill from there- she refused to attach importance to my situation, and i was left frustrated and a bit hopeless. i tried not to cry- i wasn't successful in that attempt but at least i held out until after i hung up the phone. there i was, away from home, experiencing some of the worst MS symptoms of my entire history with this disease, and completely alone. of course literally speaking, i wasn't alone, and that isn't meant to take away the comfort that hodges was offering. but who else was i to turn to? it was hard not to feel a bit hopeless. my internist told me once that it can be a very lonely thing, to be a patient. i don't think i really knew what that meant until last week. and boy, did i feel alone. i felt alone, let down, brushed off, crushed. this may sound extreme to some of you, but the entire situation was extreme. i try my best to downplay my symptoms, and even when something new pops up, i at least attempt to stay rational. but i was really scared. for my body to react in the way it did, terrified me. i had no control over anything- it was like my body was a foreign object that i was operating without the manual. i practically needed help to guide my eating utensils!

(update: my internist was out of town during this fiasco, but when my she returned, she was extremely concerned about what was going on. she actually had me to come today to discuss it. so, end result is that i got medical attention, but after the fact.)

by the end of the trip (i flew home monday afternoon), things had begun to look up. my slurring had decreased, and the tremors/shaking were under control. (at least enough to get on the plane.) i don't know why everything lessened (just like i don't know why it began), but the whole experience left me completely exhausted, both mentally and physically. i had so much to think about- i kept replaying the scenes in my head, over and over again. is this going to happen again? will it be worse? did i do something to bring it on? will it occur more frequently? more intensely? how can i stop this? how can i work on my slurred speech? what is going to happen?

as this week came/went, i tried to not let the flare consume my mind as much as it had been, which left me time to think about the trip in a different perspective. like how great it was for mySELF, my soul, my mind, to get away from things for a bit.

how comforting was is to have a 4 hour morning coffee session in my pajamas and sleep with my favorite large boned tabby, mr. jack. how funny it was to watch beau do his happy crazy dog routine of howling and whimpering over anything or anyone that he finds exciting, and watch really bad movies with daniel (not to mention the one i put elle and patty through). how refreshing it was to drink cheerwine again (elle had a bottle waiting in the car!) and frequent a few of joe & hodges' favorite restaurants (where of course he knew the owners- duh, this is joe we're talking about). how indulgent it was to eat mrs. blaine's scrumptious butter ball cookies (jean- the container is already gone!!) and experience hodges' impeccable meals (mere- i was even given a cooking lesson! i helped make a delicious, and edible!, black bean pumpkin soup- we'll see if the cooking lessons stick). how normal it was to show joe how to download his photos, drive around to look at christmas lights (btw, the neighborhoods in greensboro had these gorgeous balls of xmas lites hanging from the trees- if someone knows how the hell they get them up there, i am dying to know), and take afternoon naps that the whole household participates in. what it boils down to is that the trip made me feel normal for a bit.

in fact, joe & hodges have invited me to come down every 2 months to be "normal"! and know what? i'm going to try and take them up on the offer! i'll practically be one of those snowbirds that disappear from yoga class starting January to head down to FL in their RVs (but without the RV and not a senior citizen). it will be some much needed "me" time, a feeling of independence and progress.

what happened during this trip could (and probably will) happen again, but this time, i'll know what i am dealing with, and be a little more prepared. and by more prepared, what i really mean is less scared. oh- and i'll know not to call my nurse practitioner for any sympathy! hah hah.

you know you're a top customer when...

... you receive a holiday card from your pharmacists. i knew we spent a lot of money there, but i didn't realize we were keeping the entire company of CVS afloat! hah. what customer service!

holiday hangover

it's the monday after thanksgiving holiday weekend, and i've been struggling to get through the day-my body is experiencing a hangover of 15 on a scale of 1-10. let me explain. hangovers used to be self-explanatory- you know, the nagging headache that haunts you all day as a persistent reminder of the price you paid for having "just one more drink." (or maybe that one last bottle of wine with a charming Englishman under the stars on a Provence countryside, if you wanted to get specific.)

these days my hangovers are a bit different. for one, they don't involve vacation flings, and bottles of wine are nowhere in sight. hangovers are those mornings when every crevice and corner of my entire body is throbbing and aching, rendering me listless and uncomfortable. even the most minute of tasks seem to last an eternity, and i can feel the painstaking movements involved in every single one. the day seems to be programmed on slow motion, and i find it hard to summon my usual happy nature. i don't have the energy to hold a book, let alone read the words. my eyes are even weak and fatigued- i can feel their resistance just to lift up in sight. hangovers mean my life has this plastic, dulled film over its surface.

if it's not obvious already, i'm up against a huge one today. the tremors and spasms started increasing on saturday night, and my speech became increasingly slurred throughout the remainder of the weekend. by this morning, all 3 reached their peak, and after becoming increasingly frustrated by my inability to pronounce simple words, i fell silent. (btw, falling silent at the beginning of the day isn't how it is supposed to work.) shrugging away a cup of coffee, mom helped me to draw a bath, and i gingerly lifted my sore body into the warm water- the heat immediately comforted my throbbing legs, and i gave a guarded sigh of relief. i leaned my head back against the decadent pillow pooja gave me for christmas last year, and tried to immerse as much of my body into the water as possible.

i closed my eyes and thought about how wonderful the holiday had been. emily & jason hill flew up from atlanta to spend thanksgiving with us. i had forgotten how carefree and happy emily makes me feel- and i doubt i'm the only one. she has this infectious laughter that you can't help but to giggle right along with her! oh, and when you are having a conversation with her, she gets this "pondering, thoughtful" expression on her face. you can almost see the wheels turning in her head as she comes up with suggestions.

i thought about how comforting it was to hear dad laugh as he and jason watched football together after the big meal. and speaking of her husband, jason and emily are such a complement to each other. as corny as it sounds, seeing them together kinda re-inflates my hopeless romantic optimism. (shhh, i have to protect my reputation.) i thought about jason mowing the back yard for my dad on saturday afternoon- since his surgery, we have had to rely on the kindness of neighbors for chores like that. i thought about the energy they brought to the house- for 4 days i was entertained by the stories of their grown up lives and the little outings we took together. mom, emily and i even did a little window shopping at the stores downtown, and warmed up over lattes at a cafe with artwork adorning the walls.

i woke up from my mini-reminiscing to wrinkled fingers, and little suds floating aimlessly where once fluffy bubbles perched above the water. (i hate the end of bubble baths.) the previously warm water was now cold, and i was dreading having to coax my body out of the tub and step onto the relentlessly hard floor. i could feel my body start to register the pain, but for some reason i was smiling as i shakily stood up and reached for a towel. thanksgiving has always been my favorite holiday- i don't care for the food, but i love the feeling of family and friends being together. when emily and jason were leaving, i kept saying "thank you, thank you so much for coming, it means so much." i was getting to be a broken record, and grabbed em at least 3 times for "one last hug"- i hope she could feel all the other emotions involved in that simple gesture. i am so thankful for good friends. i truly hope i can return the favor one day.



now that i have typed this out, and tried to carve some sense of the garbled mess of today, i realized something. this hangover had all the requirements of its original definition! as difficult as today has been, the pain is a reminder of those few days of true friendship- and definitely worth the price.

something to be thankful for?

many of you have been keeping close tabs on the "meg vs. dr. carl" drama these days, so hopefully you won't be disappointed with the final outcome. (or maybe you will, depending on if you had been holding out for some slim percentage of a miracle cure or an easily fixable condition. i guess that would separate the jaded, bitter realists from the bleary eyed romantic optimists.) the highly debated answer is... yes, i still have MS. (the statement is already becoming a family joke around the house.) i have to admit, i breathed a small sigh of relief when dr. carl finally got around to confirming the diagnosis. and no, i'm not a sick hypochondriac, just bear with me.

once the follow-up appointment was officially scheduled (which was a process in and of itself, i won't bore you with the details), dad offered to chauffeur and accompany me for the afternoon. i immediately took him up on the offer- not only has mom sat through her fair share of boring waiting rooms and tense doctor appointments (we're talking HOURS of her life she will never get back), but he has us both beat when it comes to keeping his cool in emotional situations. i've been dreading this appointment. dreading in the same way i would wait for my college acceptance results. dreading in the same way i would slam my alarm clock down at 6am on monday mornings. dreading in the same way i avoided Target boy in my apartment complex. i think you get the point.

and i wasn't sure how to prepare- i mean, i've given this "spcheal" (how do you spell "spcheal"? is it an official word?) countless times. but usually off the cuff, and especially not to a doctor that seemed to be biased against my condition. how was i going to remember everything? what if i left out that one time my right ear twitched more than my right? or how i can't pronounce the word "brewery" correctly? (it's a hard word!) in the end, i wound up paging through my binders of medical records (over 250 pages- i know that b/c apparently dr. carl counted them, as he told me more than once during the appointment), almost like i was studying for a midterm. i even wrote down a "timeline" of the past 4 years, so i could be prepared when he asked which things started when, etc.


random insert: strangely enough, i'm listening to a song on Yahoo! jukebox that has a refrain of "punish the monkey" running over and over and over and over... just a small behind-the-scenes peek for you.

so finally the dreaded tuesday arrives, and i'm napping peacefully on the winding road to danville (i am a fantastic car sleeper. maybe i need to go down to the garage when i'm riddle with insomnia. like tonight.) i've been battling some major fatigue lately. it never seems to get better! by the afternoon, my walking is noticeably slower, and i'm sticking close to a chair or sofa. my leg pain has been better with the help of getting back on the fentanyl patch, but due to the exhaustion, i'm having to rely on my cane just as much. (if it's not one thing, it's another!)

and of course my appointment was scheduled in the afternoon, not to mention that getting to the neurology department from the car can be an Olympic feat. (that hospital seriously needs some type of urban planner to redo the parking system.) luckily, they do offer a wheelchair service when you come through the main entrance (that is, if you want to go head to head with the geriatric department.) but since the recent "fued" with the MS clinic folks, i've refused to use it. i know, i know the only person i'm hurting is myself. but a girl's got to keep SOME pride, especially if she's already using a cane that doesn't match her outfit on a daily basis. by the time we got to the 2nd floor, i was exhausted and uncomfortable, not to mention incredibly anxious. (i was had been tempted to take a sedative prior to the trip, but being conscious seemed to be an integral component to our visit.)

dr. carl was very punctual (that won him some points in my book- being on time is a bit of a pet peeve), and overwhelmingly polite. almost too polite. he was clearly nervous (which wasn't helping my nerves) but then i thought, wait, why was he the nervous one? he's supposed to be the doctor that was "trained by the best MS neurologists in the world" (remember, he did stress the world bit.) he was choosing his words incredibly carefully, and seemed to stumble around quite a bit before coming to a point. in fact, he asked "Am I making any sense?" at least twice. i'm not quite sure he should be asking me that question. but before we got too far in conversation alone, he performed a a complete neurological exam.

ok, i'm sorry but i have to laugh at the fact these are supposed to be "complete" neurological exams. the laugh isn't directed towards dr. carl, not at all. it's about how the exam sounds so comprehensive and reputable, when in practice it consists of the following. walking on your tip toes (think DUI-style), sticking out your tongue, smiling, a pencil, a flashlight in your eyes, and a safety pin. i'm sure it's very revealing to a medical professional, but watching as an innocent bystander (or participant!) yields absolutely nothing. the safety pin part is an practically a medieval touch!

with that out of the way, the game of 20 questions began. we talked for an HOUR. part of that could be attributed to my MS induced speech impediments.( i've found that when i'm nervous, or even slightly anxious, they tend to flare up.) i was slurring my words left and right, stuttering completely gracelessly, frequently forgot my place in our conversation, and struggled for the proper words. so i'll knock off 15 minutes, but that still leaves us with 45 minutes- in doctor time, that's almost an entire week! i mean, to get that amount of time exclusively with your physician is almost unheard of!!

i settled back into the extremely hard plastic exam room chairs and looked at him expectantly. he had wanted to explain the items he had "flagged" in his review of my records (this was when he first inserted the "250 page" comment. good for you buddy, isn't that your job??!!) but he cautioned me to "not get upset" and to "let him explain first." he began thumbing through a print out of pages with a crazed look in his eye. (he couldn't find the page, and we sat there in awkward silence for a moment.) ok, i was starting to get nervous. i looked at dad, trying to establish a telepathic connection in advance of this bombshell. he took a deep breath and said... "now that i have spoken to you, and gotten a sense of your history, i think your doctors were correct in their original diagnosis."

silence. i was waiting for the "but"... it didn't come. i looked at Dad. he looked at me. we looked at dr. carl. silence. finally dad spoke and said what i was thinking- "so... does this mean you do think she has MS?" "yes." are you kidding me? all of this drama? all of my incessant worrying? going through the WHOLE story yet again, and all i get is a "yes"? i was primed for battle. i was ready to get demanding, snappy and hysterical. i was there with my dad to defend my honor!

the "but" did finally come- just not in the context we were expecting. apparently there must have been some miscommunication (shocking) between dr. carl and i. he seemed to think i was under the impression i had the worst case of MS ever known to man (err, woman), that i was demanding to be treated aggressively and to pull out all the stops. that isn't the case at all. well, obviously i want a doctor to pull out all the stops, but i don't want to risk my life!! i had gone on Tysabri b/c Betaseron wasn't working, and when my body reacted badly to the Tysabri, we had no other choice but to go off of the treatment. therefore, i needed a new treatment plan. it was actually quite simple in my head. so his whole approach to this was to explain to me he WHY didn't think it was necessary to try other extreme, aggressive (ie risky, toxic) options. AUGH!?!?!?! communication is so overrated.

when we got to this part, he did end up giving me on some info that was new and good to know. therefore it wasn't a complete waste of time. apparently there is a basic theory to MS diagnosis. when someone is diagnosed with MS at an older age, the disease is assumed to advance at a slower course. but when someone is diagnosed with MS at a young age (this is the category i fall into), they expect the disease to progress to a moderate degree of disability in the future. therefore, the option to choose more aggressive treatment is most likely going to come up at that point. since my MS has not progressed rapidly, so far (gee thank you for clarifying that), we should hold out on aggressive treatment and stick to the interferon, disease-modifying injections. (we don't want to use up all our options in the beginning- that's how i took it.) it actually makes a lot of sense-looking at it from a purely education point of view, like they are stats about a person other than myself. it's easier for digest if i take the emotion out of the equation.

so, i still have MS. i can't tell if i was truly thankful for the diagnosis, or i was confusing the emotion with plain ol' relief. it's funny (if by "funny" you mean sick and twisted) to think i would be truly thankful for this disease. but when i weigh it against yet another plight into the vast unknown of medical mystery, i'd rather to stick to what i have now. so when it comes time to do the annual "i'm thankful for..." game at the dinner table tomorrow, i know one thing that will automatically qualify- that this whole MS controversy is OVER WITH.

at least until another doctor comes along...

remember- you can view these postings directly on kitkat chat's blog: http://meggerv2.blogspot.com/

eye on the prize

i have not had a glass, a drop, a sip of wine since meredith was here in june. even then, i threw it up an hour later, so i technically, it doesn't count. with that one out, it has actually been since february. and that was only 1/2 a glass. so technically, that doesn't count either. which brings me to... god, i can't even remember when. I REALLY MISS MY GLASS OF VINHO VERDE WITH DINNER. (or with lunch, or maybe breakfast depending on the hour. oh, and with a movie. or just the news.)

just for the record, i do understand this is quite petty and possibly borderline materialistic, but is it really too much to ask? can't a girl have a drink? i'd even throw in the MS card and the shit i have to put up with on a daily basis, and my case gets even stronger. i'm not even pleading for the hard liquor. i just want a simple glass of pinot grigio- hell, i'd even take a chardonnay at this point (as long as it's not oak-ey, i do have my principles ya know.) and that really shows i'm desperate.

you probably assume i can't drink because of my endless medications, and that i am being a good patient by obeying the prescription labels. um, no. i never read those things anyway (i recommend you do the same)- besides, they can really mess with your head. next thing you know, you'll be convinced the red spot on your left pinky is morphing into a fatal side effect. besides, i have been drinking my way through meds and IVs the past 3 years. mom even asked my doctors (repeatedly) if i should still be drinking- they all laughed and said they didn't see why not. (love them!) the real reason i'm not drinking is very simple. i throw up. we're not talking get a little nauseous, or get a slight headache. oh, no. we're talking about half an hour later i just start vomiting.

it started with red wine in 2005- i was convinced it was just the particular "label" and i worked my way thru others. i threw up each time. candy gently suggested i stop searching for the elusive vomit-free label after too many evenings spent with me on the bathroom floor. so, as much as it pained me to give up my winter unwinding habit, i do have a special place in my heart for michelob ultra (i know, i know, totally lame and girly.) but get this- the same damn thing happened! i tried a bottle of mich lite (patty & i? we go way back with this...) and again, it failed me. i even attempted a draft miller lite at ragtime one night- baaaaaad idea.

at this point, i was down red wine and beer. (not the best odds.) but since i'm at that age in life where everyone in the world has decided to get married, i've been through few open bars in my time. i've always been a fan of gin & tonic (thank you ellie) so i was relieved i had a stand by. background: shannon and i made a road trip over thanksgiving 2 years ago (wow, was it that long ago?!) to chapel hill- it was liz's wedding. when the time came for the reception, and i calmly ordered the chosen drink. no pressure, right? i got it down ok, and thought i was in the clear. but the next morning, when mom & dad came to pick me up, and we had to stop on the side of the highway for me to puke into the weeds!

all of this was very tumultuous, but at least i had my white wine, which is truly the love of my life. we have spent many nights on the rooftop of my building and thru episodes of desperate housewives at candy's apt across the hall. for a while, our relationship was stable- we even made it through the worst of the worst (last year around this time when i couldn't even brush my own teeth or walk to the bathroom.) but suddenly, around christmas/new years, i noticed a change. i was having to force the wine down my throat- never has this happened to me in my LIFE of drinking wine. (which of course mom, was AFTER i turned 21.) and then it happened- it was during our yearly girls weekend on the cape, which is always filled with vinho verde and pinot grigio. during a game of scrabble (another hot item at during our weekends) i wasn't able to drink anymore. the nausea was constant.

so now you can see how traumatic this experience has been, and understand how desperately i miss my wine. but there is hope, and i have somewhat of an experiment. since i am off tysabri, i am curious if my system will be able to stomach a gentle wine. (the doctors theorize that the med was so toxic that it was wreaking havoc upon my digestive system- perhaps in combination with one of the other drugs.) i plan to test this over Thanksgiving, but very cautiously- i don't want to ruin all that good food by heaving it into the toilet. but in the meantime, i'll just keep on yearning for wine. by the way- thanks for letting me vent. i feel much better now.

remember, you can access my blog directly by going to http://meggerv2.blogspot.com

does MS attract MS?

it always amuses me when people find out i have MS because i can predict almost 99% what their reaction will be. "Oh, My hairdresser's cousin has MS- you two should meet!" or "You have MS? Have you met Susie yet?" (like there is only 1 Susie in the world.) trust me, i'm not being a hater- i know that everyone has the best of intentions, but does it mean we have to be friends just because we both have MS? look at it this way- MS is just a characteristic like, say, having blue eyes. "OMG my baby sister has blue eyes- you are going to be the BEST of friends." we're still people, and the laws of chemistry are still going to apply. there are beautiful, caring, brilliant, hysterical blond bombshells that have MS (aw, what a compliment- sounds like me!) and there are ugly, dull, morons that have MS. but don't worry, i still smile nicely and make simple conversation about poor little Susie and her various ailments.

there is another aspect of MS to MS friendships that i believe is more common. i think that the aversion to meeting and befriending others with MS isn't because we are hermits, but has more to do with admitting our disability. it is one thing to understand you have the disease, and live your life around/with it. but it is quite another to be paired with someone that has MS- you realize, wow, i really have this. it serves has a reminder- and not necessarily one you want to be reminded of. for a long time, i steered clear of associating with the MS Support Group crowd that my parents frequent- for this exact reason. i didn't want to sit in a room with other disabled, depressed people complaining about their various challenges. it's depressing!! i don't want to be reminded of that, or worse, have a visual encounter of where my life could be in 10 years.


as i've written about before, Lewisburg is a small town. no, really- SMALL. i thought i knew what small was, considering i grew up in High Point, NC. there were about 35,000 people there. but Lewisburg? we're talking 5,600 people small. and i am quickly coming to understand that being this small means that everyone knows everyone else- and intimately, too. hell- they have even heard of me, and i've just started making public appearances this summer! when mom and i moved here in march, mom began adjusting into her new life- making small talk with the neighbors, walking the dog, working out at the bucknell fitness center. apparently mom's first topic of conversation has to do with her daughter, me. it's like she word vomits my situation immediately "oh by the way my daughter has MS"- so she can get it over with and have it out in the open.

she began to hear of a younger woman that worked at FBC who had been recently diagnosed and was having somewhat of a difficult time. mom urged me to meet her, but i wasnt' interested nor did i know if she even wanted to be confronted by yet another person. there was no way i was going to make her feel better in the state that i was in- barely walking, exhausted constantly, in wicked bad moods from adjusting to my "new life", etc. yeah, i'd be a bucket of joy for her! but every time i met someone with my mother, they would bring this woman up! i mean, they seriously wanted us to be friends. (i guess i could take that as a compliment, they must think i ROCK! either that or she's super hard up for female companionment!!) finally, a couple months ago, mom was talking to some women after church, and before i knew it, mom was in my face dragging a woman behind her and said, "Meg. Jana. Meg has MS. So does Jana." omg i was a bit mortified. i think she was too- or maybe caught off guard was the better word to describe it.

we only had 5 or 10 mins to chat, as she was off to a board meeting, but in that 10 mins we wound up talking nonstop. about our specific ailments, questions we have, our "story" of ms- but we barely scratched the surface. on the ride home, i was telling mom how much i liked her, and it would be good to know someone around my age that is going through this. but at the same time, i don't know where is in her life right now- how much help does she want, how much should i butt in, etc. from past experience, i know that i have turned down a lot of offers of help until i was ready. plus- i didn't know her too well, i wouldn't even know how to help her at the moment.

we've since emailed and seen each other before/after church, and i really like her. i know i should like a total nerd, but i don't have many friends in the area. there is amy, a cool chick that heads up the Neighbors & Newcomers, who is from charlotte and has 2 young boys. then there is debra, my next door neighbor, who has 3 young kids. as much as i adore both of those women, their lives are in a different place than mine right now, and they have priorities and lifestyles that just don't mesh with mine. although i love our coffee talks! but now i have jana- and it's great on both levels. yes, she does have MS, so i have a person i can vent to who really knows what is going on. AND she's younger, and single, and i'm hoping can help me ease out into this town, meet new people and have some new experiences.

we went out to lunch on wednesday to a little cafe inside the Pennsylvania House outlet store by the Library. (i was psyched b/c i have NEVER gone out to lunch in Lburg- except once with ML- AND i was going to have some girl talk time!) jana came and picked me up (i'm still not driving, but i'm going to take the car for some test drives this weekend), and from the time we got in the car, to when she drove me home, we talked nonstop. it's SO comfortable to talk to someone who REALLY KNOWS. don't get me wrong- all my friends and family let me vent and cry and complain. but it was refreshing to talk to someone that is sharing many of my experiences. and we could ask each other questions and advice, because what we are going through is scary. it's LIFE long. and we've got to learn to live with it- but doing that on your own, by yourself, is very hard. trust me, been there, done that, got the tshirt.

this post wasn't wildly funny or extremely enlightening, but i just wanted to share that i've made another friend. and i don't care that she has MS.

remember- you can view these postings directly on kitkat chat's blog: http://meggerv2.blogspot.com/

twisted over you...

does anyone remember that song? keith sweat? twisted? riding back and forth to tennis practice in the yellow volvo blasting his CD? (hmmm, maybe that last one was just me.) i know everyone would prefer that i sing this song out loud to jog your memory, but unfortunately the only people around are the Amish- and i don't think they'd appreciate my skillz.

yep, i got twisted this morning, but it definitely wasn't over love. i went to my first yoga class in over a year- above cherry alley cafe (a local coffee shop). i emailed back/forth with the instructor over the past couple months- i wanted to make sure he was briefed on my limitations. i didn't want him to think i was a total amateur or totally lazy. it clearly took me awhile to make it to a class. i was nervous- i felt like mom was dropping me off for my first day at school!

it felt SO GOOD to be back in the yoga studio... the soothing music, the empty space, the simple stretching. there is something about yoga that immediately calms you- it's amazing how clear your head can feel when you don't have 8 million thoughts competing for your undivided attention. i snagged a position near the wall (i knew i'd be leaning against it at some point) and unrolled my mat. the session lasted 1 hour and 15 minutes, but i had to duck out early to get to a urologist appt in danville @ geisinger (i think we should turn this into a game- every time i mention "geisinger", you guys should... breakdance.)

i wasn't able to keep up with the instructor (or the class) for a significant portion of the session, even with modified versions of the various positions. i was pretty disappointed in myself, which i recognize (rationally) as a mental issue. i really have trouble adjusting my mindset to fit my current abilities- ie instead of being upset with myself for not keeping up with the class, i should be proud of myself for getting through over 50% of the positions! i think everyone has this problem in various aspects of their life... so, we have that in common. put it on your list for 2008 new years resolutions.

the stretching felt amazing... it's so hard to get my body to move, but if i take the time to force my arms or my legs slowly, then i usually succeed. i wound up cutting out earlier than planned- the instructor got into some advanced positions and i just couldn't cut it. (ok, rational thinking, mental mindset- i recognized that my body had enough, and stopped before i crossed that line.)

mom wasn't due to pick me up for a few minutes, so i headed downstairs to the coffee shop to snag a latte (with soy milk- augh, it's so hard to remember NO DAIRY!) i dropped my mat and bag on an empty table, and looked up to see my friend Ilene sitting across the room. Ilene is awesome- she is one of the first people I met here, and we met through my mom. mom goes to the MS Support Group in town (i avoid those things) and Ilene coordinates all the meetings and content, etc. from day 1 she told mom she would love to talk to me, anytime, about MS or just about life. she lived in NYC for a number of years, had this high powered hot shot job, big career woman. but when she was diagnosed, a lot of that changed. she and her husband live in an amazing house out in the country- the house itself is beautiful (both inside and out) but the standout feature is the view. almost 75% of the house has huge, wide paneled windows that look out over the rolling hills and fields that is central PA. if i had a view like that, it would be hard to not feel inspired every single day.

anyway, i chatted with Ilene for a bit, and she told me that she goes to a yoga class at Evan's Community Center (Evan is the hospital here in Lewisburg) that is actually chair yoga. she said it's not as aggressive, and the women that run the programs are incredibly supportive. she is going to check with the coordinator and see if she can bring a guest next friday (that would be me). i confessed that the class this morning was a bit much for me to handle, so chair yoga sounds like a great first step back into the world of yoga. alright gang, that's my life in a box for today.

peace & lattes!

where does faith fit in?

a good friend and i were recently emailing about the struggles we each face when it comes to the topic of religion. (btw, you know it's a real friend when you can talk about something so private and indescribable!) we both confessed that we have been disgusted in the past by the hypocrisy of so many when it comes to faith, and turned off to the whole idea altogether when pressured " by "in your face" religious fanatics. it made me stop and think about where i am in my personal journey, and how faith affects my daily life.

it's not infrequent to hear testimonials and revelations of faith that piggyback onto a chronic illness or a devastating circumstance. perhaps "piggyback" is the wrong word, b/c i don't mean for it to have a negative connotation. i think it's only natural to ponder your own mortality when faced with the news of a loss of a loved one, or an unexplainable illness. i recognize that there are many levels of faith, none being "better" or "right" if compared to another. there is no guidebook, no God for Dummies version- even if there was, your faith is personal, it's not based on the actions or beliefs of others. i truly believe that faith can take any form you choose, its presence morphing itself into an acceptable sidekick in your walk of life. but i can only speak from my own experience...

when i was a little girl, i believed in unicorns, fairies, the tooth fairy, a handsome prince, toys that came to life, animals that talked, santa claus. of course, now that i'm old (and bitter- ha ha), i've had my heart broken, been betrayed by friends, mislead by those i trusted, been disappointed in others- long story short, i have a critical view and defensive edge to everything i encounter. i'm not so good with things that cannot be explained- i prefer to call its bluff every time. i want reasons, i want facts, i want plans (i want backup plans), i want to know how, why and when. i'm stubborn as hell. (does this sound familiar to anyone?)

so being faced with all those daunting health obstacles and all that jazz of the last few years, i found myself having to digest and accept a life-long challenge.life-long. that's forever- how do you even wrap your head around that?! suddenly, i couldn't answer any of the hows, whys, whens that i demanded. i was going insane for 3 years- i looked everywhere, i talked to anyone who would listen, i read any book i could get my hands on, i googled the hell out of it, i analyzed every symptom, trying to manipulate its cause and effect. but the more i tried to change it, the more i tried to deny its existence, my faith started to take over. it was minimal at first, i don't think i was even aware, and the takeover was gradual. but slowly, a sense of calm, and a feeling of peace crept into my heart. and as my disease grew, taking over so many aspects of my personal life, my faith strengthened right along with it- maybe even more.

you might find this odd- shouldn't i be angry with God? i am a good person, i respect others, i go to church occasionally, i pray for loved ones each night. truly God was punishing me, no? if i were a true Christian, wouldn't God take my pain away? but instead i see the opposite- i believe that because I am a Christian, God gave me this pain. i like to believe that because i have beared this disease, another child or woman will not have to. there is be a greater good that is coming out of this time in my life, and i am leading the way without knowing the directions. so while i wait to understand and see that, i try to focus on myself, and my actions, and make sure they live up to the ideals i hold so close.

yesterday (sunday) was a memorable day for our family, and a cheers! to the life we are beginning to create in this new town. yesterday morning, my parents and i were officially accepted by the elders of First Presbyterian Church (FBC) in lewisburg, and were introduced to the congregation during the morning's worship service. standing up by the pulpit, with 2 other new member families, i was almost bursting with pride. you hear people use this phrase, especially parents when it comes to their childrens' achievements, but at that moment, i truly understood how they must feel. it means so much to me that my parents took such a huge step in their personal faith to get to that moment. i knew how nervous my mother was to share her feelings publicly on faith, and i knew my father felt conflicted when it came down to joining the church. but they did it, and we all stood in front of such love and acceptance- and at that moment, i felt so safe, and so content. it was as if someone was patting me on my back, saying "you were meant to do this."

after worship service, we were ushered down to the parlor, where we were to meet other members of the church. we were positioned in a receiving line beside the barlett family, and nicole & chris (a brother/sister- nicole has the most adorable, and happy, baby girl!)- i planted myself in a huge armchair (as i *this close* to the wall of exhaustion!). endless members of the church waited in line to shake our hands, or to give us a welcome hug. i was astounded. i have never experienced anything like it- i felt so welcomed, and so genuinely cared for, by people who only the hour before, didn't even know i existed! (for a moment, i felt like i was getting married!!)

but let me back up a few months, share some of the hows and whys of the story. moving has a huge impact on your life. suddenly you are in a strange town, you know no one, and there is no social outlet or circle for which to turn. until this has happened to you, it is difficult to comprehend how achingly lonely it can feel. my parents and i have been lucky to have each other during this time, especially since the norm is you are usually moving away from family as you age, and not back towards each other. over the course of the spring, mom and i frequently expressed to each other that we wanted to find a church we could call home, but this was difficult to do since i was incapacitated in many ways throughout those months. i wasn't physically capable to walk up the steps into the sanctuaries, or have the energy to sit in the pews for an hour at a time. but the summer months came, and with it i grew stronger, and our "church hop 2007" tour began. (if you have ever visited us, you'll remember that we didn't have to go far in this tour- the churches are literally steps from each other. i affectionately call the area "church square.")

my brother and i were raised presbyterian, and my parents attended the same church throughout most of our childhood. so the local FBC seemed a natural first step. after the visit, we both walked away with a strong impression of faith and a true compassion from the people of the church. but this was our first foray into Lewisburbug's religious sector, and we wanted to be open to other possibilities. so we gave it the good ol' college try, attending both of the Methodist churches, a Lutheran church, an Episcopalian church.... but we kept coming back to FBC. ironically enough, each time we would encounter another connection- the piano tuner's wife, neighbors down the street, a coworker of dad's. the sermons were always relevant, and the mindset of the preacher was so true to life- real life.

this is a natural foray into the whole point of this posting. as i type this, my right hand is partially numb, but has included the next step of prickly, painful "pins & needles" that is supposed to come AFTER the numbness. (clearly my body didn't get the memo.) it's an odd sensation to be typing, but forcing my fingers into positions that i know mentally will move the keys. this is where faith fits in- it's everywhere. it's in everything we do, everything we say, everything we work for. for me especially, i don't know how much my life will change as the effects of my MS grows. i don't know if i'll be in a wheelchair, or if i will lose the use of my hands, or if my vision will turn against me. so for me, the only way I can move forward, both knowing and accepting my condition, is through a strong foundation of beliefs. and this is how faith fits in- it envelopes us in comfort and courage to move forward in our lives without knowing every detail of every step along the way.

i want to wrap up this post with a very simple, yet applicable, prayer from the author, Richard Morgan, from his novel Settling In: My First Year in a Retirement Community,

Keeper of our days,
if only we can risk the unknown
and not cling to the familiar,
we will learn of your grace and strength.

Amen.

On The Lighter Side

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

A Day in the Life of the Furry & Fabulous

9am- wakeup, yawwwwn

10:30am- nap time!

12noon- ahhhhhhhh, get comfy

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

3pm- dude, give a sister some space

4:25- wait, where are my paws?

5pm- nap time!

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

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

famous last words

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

and therein lies the curse...

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

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

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

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

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

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

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

tap dancing

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

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

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

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

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

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

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

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

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

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

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

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

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