Tuesday, October 28, 2008

To relapse, or not to relapse?

I'm still having a hard time figuring out what "significant new symptoms" means. Something weird happens to my body at least once a week even when I'm not relapsing and it's just not my style to be running to the doctor all the damn time. Apparently, I am officially mid-flare right now.

Thursday I finally caved and went to see the neuro after 3 straight days of my left arm failing it's duties. I've been having this problem with my left side for about a month, but it's been off and on. So I went to see dude, and he chastises me for not coming sooner after hearing my list of recent symptoms. And I had forgotten a couple because one is that I can't remember shit right now. I've been word fishing a lot lately which makes writing, blogging, and explaining the magic of radiology to my patients very frustrating. My legs have gone all wonky as well so I limped around the hospital all weekend, and no one had the balls to ask me why. My head hurts. A lot. But the doc says headaches are not correlated to MS. Huh?

So WE decided to forgo the IV solumedrol since I've probably already been relapsing for several weeks and I can't afford to take the time off for the infusions. I'm actually starting to feel a bit better but that's likely due to the fact that I have been off work a couple days. My next stretch is 55 hrs in 5 days, so we'll see how it goes in the middle of that. And while I've woken up feeling pretty good the last couple of days, by noon my heads athumpin, my left arm is stupid, I get all shuffle-footed, my neck aches, and it feels like nap-time straight through to bed-time. When it finally is bed-time, I'm suddenly wide-the-fuck-awake, and my legs start to jerk.

All this is causing me to have an attitude that's not super-conducive to doing Halloween projects with my short people, or getting stuff done around my house which is filthy. I've got an hour long joyride in the knockknockbangbang magnetic fun house to look forward to in two days as well. And for the first time, the script for the MRI simply states "MS" as the ordering diagnosis, so I'm guaranteed to get at least one, "But you look so gooooood!," from one of my colleagues in the MRI department at work. If the results are anything like I expect, I will have to start thinking about which meds to try next since the Avonex is obviously not working.

I'm grumpy and lonely coz my husband's working out of town this week and he's the only person in my life that can be nice to me without making me feel patronized or placated. My cop brother will be coming around in his squaddie though to "make sure everything's ok" and not at all because he wants to mooch off my wi-fi and freak out my neighbors.

Jeez, I'm just whining now. Think I'll call it quits.

Monday, October 6, 2008

No Empire, No More

My favorite comedian is a cross-dressing English chap named Eddie Izzard. He does a bit in his "Dress to Kill" show about Europe and World War 2 which is hysterical. (And you can watch it here.) At the end of it he's talking about England having to give back the countries they had acquired after many years of being one of the world's greatest empires and he shakes his head and says in a dour voice, "No empire, no longer." It's that quote to which I referred when I decided to call my blog No Empire No More. (I did realize I was misquoting; I didn't want to rip him off completely.) It expresses how I've felt since my MS diagnosis. I was once powerful and rich with energy and capacity. Now I'm not always sure who I am anymore.

In younger years, I was something of an athlete. I've always been a little clumsy. My shins riddled with bruises from lacadaisical clamberings in and out of our huge van or regular skirmishes with my big brother. But I played soccer and hockey for many years, and was pretty good at both. I seemed to have plenty of physical coordination whenever I set my mind to using it. I spent many teenage summers surfing and winters skiing and snowboarding. I had no fear. I would launch myself whole-heartedly into any strenuous or dangerous physical activity. I've jumped off of 80 foot bridges in Central America, and had the fortitude after to climb the 30 slippery feet of mud out of those rivers. I dragged my poor father on every thrill ride the east coast has to offer. I hiked in the Andes mountains in Chile. I rock-climbed and repelled in the Shenandoah Valley. I was in fantastic shape before my two pregnancies made me a little squishy.

I also used to be really smart. I have always been a good student and a rabid reader. My IQ was tested as a kid and it was pretty high. My memory was just shy of photographic. I have always been an endless treasure trove of trivia. I have always been a quick study with a knack for figuring out the best and fastest way to do anything I've set my mind to. I took one of those aptitude tests in high school that are supposed to help you decide what to be when you grow up, and the results were that I could probably succeed at anything. (Not very helpful for someone who is terminally indecisive.) I made extra money in college tutoring in my major and editing people's papers for them in a myriad of subjects. I should have gone pre-med but my first passion was music and I pursued that first. I survived being the youngest and only female student in my major by being the best student in my major. I used to be able to read a book on anything and master it.

I used to be able to do it ALL. I worked two jobs the whole time I was in school and averaged about 3 hours of sleep a night. I could juggle kids and jobs and school and friends with aplomb. I never used to have any trouble keeping track of where everyone goes and when. I could remember all my tasks, assignments, grocery lists, etc without having to write them down, and even return the library books on time. I was a multi-tasking phenom. I felt like the Empress in my world most of the time. I manged a lot of work and stress, and felt like I was born to do it. Don't get me wrong, I've never considered myself royal or even dignified. But I used to have the sense that I'd been born into the nurture and nature that formed me into the intelligent and driven person my parents always expected me to become. I was in control. I knew that I could decide what happened in my empire and that edicts I passed down to my "colonies" would be strictly adhered to. By sheer force of will (my father insists that I include congenital pathological stubborness in my medical history), I have always been adept at getting most things in my world to go the way I chose them too. Maybe luck had something to do with it, but more often than not, things in life have turned out exactly as I expected. Until now.

I've not suffered so much as anyone involved in WW2, and I would never mean to imply that. But since MS has become part of my life, I've seen the gradual decline of my empire. Thanks to a disease that is enigmatic and unpredictable at best, and crippling and devestating at worst, I can no longer do it all. I have lost access to the vast reserves of energy I used to tap at will. I have lost the ability to answer the question, "What if?," with even a small confidence in my best guesses. I can't remember everything anymore; there are holes in my brain and things leak out from time to time. I certainly cannot do one eighth of the physical activites I used to enjoy since most of them require good balance and all of them require some level of strengh. I feel like MS has taken a lot from me, but it has given me one thing. It has given me fear. I never used to be afraid of injuring myself. I've broken eleven bones and had two concussions; all of which I earned in fantastic adventurous ways. I have a reputation among friends and family for being "tough as nails like her father." Now, I'm afraid to go jogging on my own. What if I get hot, lose the feeling in my legs and feet, and end up falling and smashing my face or breaking a hip? Who will teach my son to surf now that I can't balance on the board? What if I get optic neuritis? I work in imaging for chryssake, how the hell am I gonna work if I can't see? My brothers are retards, who's gonna take care of my parents when they're old(er) if I'm disabled myself? The questions go on ad nauseum.

I'm not happy about it, but I've started to get accustomed to not being capable physically of what I once was. Blindness and disability are scary enough, but it's cognitive impairment that really has me worried. People know me as the answer girl. They think of me not only as smart, but really fucking smart and I'm not ready to let them down. They rely on me for useless information and pratical know-how. If someone asks me to describe myself "intelligent" is the first adjective I reach for and not because I'm arrogant. I'm not bragging here; I've no need to. Nerdiness is the side-effect of my personality and I've just reached an age where I am comfortable embracing my geek-dom. Here I am, finally confident in myself at least intellectually. Now some neurologist tells me I've got a disease that will definitely knock me off my high horse in the world of sports and fitness. Will likely result in future embarrassment at loss of control of bladder and bowel. All this and mental acuity goes in the toilet as well?!

It may be lame, but I indentify myself with my brainy-ness. What I'm really afraid of is: Who will I be when I'm not smart anymore? Who will take up the responsibilities of my mind? Will I ever learn to trust someone else to run the Empire?