complicated

the title sums up my recent appointment w/ the pain intervention clinic last friday. this isn't the first time i've been labeled as a "complicated" patient- but i sure wish it was the last. unfortunately this isn't like grey's anatomy, where a "complicated" patient means izzy will race to your defense at every assessment, and meredith will pull double shifts to research some obscure, never been done before procedure that results in derek performing a risky but ultimately successful surgery that cures you forever. sadly, this is not the case in the life of meg. oh the days when "it's complicated" was my response to a relationship status. (and there have been a few of those, haven't there?) i can't believe i am asking for that back. hahahah.

the past week or two have been spent sleeping... i do rotate tho, so no worry for bed sores. jk, that's kinda gross. i sleep on the leather couch in the living room, i sleep on the loveseat, i sleep in the bed, and i sleep on the sofa in the piano room. oh! and in the car, can't forget that one- those zzzz's are usually on the way to geisinger, which was the case on friday. i had a consult at the pain intervention clinic in the new geisinger pavilion off woodbine, and to be honest, i had been dreading it. due to the pain factor of my MS, it throws many doctors for a loop. they're not sure how to treat you, who to refer you to, what diagnosis your pain is attributed to... i mean, i've been to neurology, rhuemotology, internal medicine, pain clinics. one of the most difficult things for me to deal with is the huge gap between my expectations and what the doctors think my expectations are. i'm not a dumb girl, and i've had plenty of experience over the past few years. i do realize i have a disease that which there is no cure. i realize that, i accept that, i do not have any false expectations. but for some reason, i have to battle this with each new consult i go through, or each new doctor that is added to the team. they seem to preface their opinions with "we don't have a magic pill that cures you" or "we can't make everything better".

yes, yes, yes, i realize that, can we move on to what you CAN help? maybe i should tattoo that on my forehead. or INSIDE my brain- then they'll see it when they review my MRIs. you wouldn't think getting some relief would be such an uphill battle would you? i know, i know, i have complained of this before. but it really is a sense of utter defeat for a doctor to look you in the eyes and say "sorry but i just don't think there is anything we can do for you." i don't accept that. how can i accept that? it's the year 2008, we've cloned animals! can't you relieve some of my pain?

i had done some research lately, mostly on spinal chord implants, a procedure that my interest was renewed in when i heard of a local woman with MS whose main symptom is severe, continual leg pain, who had recently received one. i talked this over w/ dr. IM1, who considered it a possible option, although a remote one for her. (there seems to be many "remote" or "last resort" options, but none that precede them. odd.) regardless, i would have to be cleared by the pain clinic doctors and eventually the surgical team, so she put in a reference for a consult at the intervention clinic down the street.

but friday proved no different from previous consults, esp. where pain was concerned- there was a few hours of such frustration. the consult took almost 3 hours (no lie), and i was seen by a nurse, a PA, and a couple doctors. i was so exhausted, so drained, so tired. for most of the consult, i was curled up on the exam table (a nurse had gotten me one of those fabulously heated blankets- the ones that they keep in the reverse fridge? i want one of those btw) mumbling half the answers and hoping mom would fill in the rest. there were a few bad omens during the initial exam. one was when the pa said, innocently, "so, did your physician refer you to dr. pain1 specifically?" a red flag went up. when i told him no, i also asked why. with some hesitation in his voice i was told "well dr. pain1 is against spinal chord implants, and i see that this is why you're here, to be considered a candidate." i sighed. deeply. "well, he can always refer you to another doctor." awesome, i can't wait to go through another 3 hours of consult, why am i even here???

when the doctor finally entered the room, i felt like i was watching a really bad foreign film. for one thing, the doctor had a heavy heavy accent, which made it very difficult to make out the words- and the speed of his speech, oh boy. it would make your head spin. the PA seems to pick up on this "issue" and he was running an odd, awkward translator role for my mom and i, while also briefing the doctor on my previous medical history. but here's what we wound up with, yet again. "unfortunately, your pain issue is quite complicated, and because it is mostly from your MS, it makes it a very difficult condition to treat." yes, i have heard this one before. continue. "spinal chord implants are not an option. they do not work, and you are too young." well that part was short and sweet, and def expected. "there is not a magic drug to fix your pain, we cannot cure every medical problem, and every situation is different, and this is something you did not ask for, but you have been dealt with, and it's not fair, but you just have to take the drugs and be a zombie most of the time, we have no other option for you." wow, right? by this point, i had hidden behind my sunglasses and was twisting my poor hands into some form of japanese origami. which is also code for "i'm furious/hurt and trying to control my emotions." i'm sure some heavy, deep, Lamaze-type breathing was used at some point. mom even tried to speak up, with "i'm sorry, she knows that there isn't a cure, that's not what she's asking for, she just wants some relief." but even with restating the obvious, he continued to go on and on about how there aren't magic cures or a pill that fixes everything......... oh, i wanted to bash my head in. unfortunately for me that wouldn't have given me any relief, since my migraine was pounding relentlessly already.

the ONLY recommendation he could give me was to switch up my pain meds (swap out the fentanyl for methadone- don't even start about anna nicole smith, i already voiced my hesitation- and adding back in baclofen, which helps with muscle spasms which in theory would reduce your pain if the spasms were reduced) and see one of the clinic's pain psychologists. i couldn't keep my mouth shut on that one. i'm sorry, but i already see a therapist who i actually like (and i have trust issues with therapists, so don't even go there) not to mention i don't think imagining my pain as a bird and visualizing it flying away on wings of happiness is going to be something i can tolerate right now. as there is stabbing pain making its way up and down my legs and radiating with a burning torch into my back. (i left that last part out.)

i just wanted to go home... go to bed... forget this day. i couldn't even THINK about how i was going to have to see yet another physician since this one clearly had me in a body bag and halfway in the ground already. one of the reasons i always have someone else at the appointments with me (usually this falls to mom, as much as it thrills her) is because maybe in my discomfort and impatience, perhaps the way i view things could be... a little different from the reality. all that thinking rationally bullshit. but mom came away with the same final impressions this time- there was nothing they could do for me. hearing a doctor say that, no matter how many times you might have heard it before, is always daunting. it's daunting, it's depressing, it's hurtful. here i have worked so hard- i have made sacrifices, i have been willing to try different treatments, i have made my appointments, i have changed my entire lifestyle- and yet i'm still in this position. where do you turn when someone tells you you're hopeless? i mean, really, am i supposed to live a life of sleeping constantly (and watching the hills)? that's not much of a life. luckily i'm not a depressive maniac and don't see myself on my deathbed just yet.

mom has been very upset about how much i have been sleeping, and i have to admit, it's a bit excessive. i've done a complete 180 from any insomnia periods i've lamented about in the past. i sleep through the night, awake around 8, return to sleep by 10, wake up in the afternoon, fall back asleep through dinner, and wake up just in time to spend a half hour w/ dad before he retires to bed. then the whole thing starts all over again. i can sometimes force myself up to a previously scheduled doctor appointment, but that's about the only part of my schedule i keep to. i've canceled outings with friends, i have bailed on plans at the last minute, i have avoided phone calls and not responded to emails. i honestly don't even have the ability to think past this moment- all i can tell you is that i'm so tired. i'm utterly exhausted, all the time. and when i'm not sleeping, i'm in massive amounts of pain. so you tell me which you would enjoy/tolerate more in this scenario?

there have been a few perks over the last couple weeks thought. a major one was the surprise i received in the mail from tess stephenson, my high school friend lauren's mother who still lives in high point (not lauren, she's in CO.) i received a box in the mail from their household, and i was surprised and curious as to what it held inside. and what a perfect, and most needed gift. inside were 2 hand made knitted afghans, soft and cuddly and just what the doctor ordered. the blue/green one hasn't left me side in about a week (it probably needs a shower just as much as i do!) the throws were blessed by the priests in their church, and the women who knitted them prayed for me during their making. i was so touched by this thought, and it really has given me comfort, especially after a trying day such as friday.

this one you may not see as a perk, but maybe it gives you a glimpse into how pathetic my recent days have been. i was called back in for a follow-up re: my nail infection. ok, it wasn't really a nail infection. this is embarrassing but equally hilarious so i will share it. somehow, i got a yeast infection in my fingernail bed! hahahahah! hilarious right? and apparently it was the talk for the derm department. now, most of you are thinking "i have never heard of that!" and apparently neither has anyone else. why does this not surprise me- it's just another example of how i get the weirdest medical conditions out there. (or, not out there.) anyway, the doctor was incredibly good looking. actually, he looked quite similar to a brief love interest i had the summer after graduation (hmm, i think that was it? well, yes, i think that was it. gee my memory is fuzzy.) so to get called in for a followup was just, well, the highlight of my week. good looking AND smart- now that's a combination i can't complain about!! my mom tried to point out that he probably called me in for a genuine followup to the nail infection, but then she left me have my deluded fantasy as i fell asleep on the sofa.

even though i have made a habit of not taking calls over the past week or so, a few of you haven't given up. a persistence award definitely goes out to jana. today she was in the neighborhood visiting a potential dog sitting family, and stopped by afterwards to see if i was still alive. i have to admit, i have been so horrible about the phone calls. it's embarrassing b/c that's not my style at all. but i've just been a solid wreck, and barely functioning. i'm not even emailing like a champ, which is usually part of my daily agenda. after complimenting my fabulous bed head, she settled onto the couch opposite me, and was probably tempted to sleep away the rainy day like i planned to do. but, i managed to stay awake for the entire half hour visit- an accomplishment since i fall asleep on my poor mom and dad consistently. (mom will ask me if i want some coffee- i'll nod enthusiastically YES and 10 minutes later i'm snoring again under my comforter!)

i also had a visitor on sunday afternoon- miss lindsay was in bloomsburg visiting her mother for mother's day, and stopped here on her way back to dc. she always comes with some kind of gift or surprise, and i wasn't to be disappointed this time! she brought a bag full of chick reads (same thing as chick flicks but with the obvious change in media) which i cannot wait to dive into. unfortunately i can only read 1-3 pages a time due to my vertigo, but it prevents me from flying through novels as i tend to do if i am excited by them. we had some quality girl chat time, which included an in depth analysis of her current love life by dr. meg- hilarious considering i haven't had a date in months. oh well, at least i can still offer the wise, older woman point of view.

but for the most part, i have been sleeping, i won't argue that fact. i had to force myself to write this tonight, which is also uncharacteristic of me. i look forward to blogging about my days, and to not have the enthusiasm or energy to do so was depressing. it's hard not to have days where you wonder "why me?" or are obsessed with thoughts on everything and everyone and everywhere you are missing. i also feel incredibly guilty for letting my physical limitations restrict me so much. i feel like i have "given in" to their restraints, and i feel that i have let down so many people. i keep apologizing to my parents, esp. my mom, for sleeping so much. every time i wake up, the first words out of my moth are "oh i'm so sorry, i'm so sorry." as much as they tell me they're not mad at me, they're not upset with me, they just hate to see me go through this and wish there was something they can do- as much as they assure me of that, it doesn't make me feel less guilty. b/c i feel responsible for how much i "allow" this to happen. i guess you don't win all the time.

i hope my attitude picks up over the next week, and that this rough period lifts long enough for me to get my independence and determination back to DEMAND some relief or at least other options from the medical team. my internist called me this afternoon and in a teary, shaky voice i tried to share with her what has happened over the past few days (week). she was asking me if the change in medicine was okay with me, and i said simply yes, no, i don't know, whatever you think. she remarked that i didn't sound as "feisty" as i normally do, which made me tear up even more. she's right, i have lost that fire. however, i'm confident it's only temporary, b/c you can't keep a good girl down forever. right team? sweet dreams.

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