12.26.2007

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/

12.22.2007

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/

12.14.2007

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.

12.11.2007

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!