So I was at work yesterday when this crazy ass headache crept up behind my eyes and my vision started to go all blurry like I couldn't keep things in focus. My left eye started to hurt and I just had the weirdest feeling. So on my lunch break I decided to run across the street to my neuro's office just in case. I really thought these feelings could be more likely related to an oncoming migraine rather than optic neuritis but I was freaked so I went. He didn't see anythig when he looked in my eyes, and agreed it could just be a migraine but decided he'd rather be safe than sorry and gave me a round of IV Solu-Medrol in the office. He sent me home with a week's worth of PO Medrol too.
Lemme start by saying thanks to all the bloggers who have posted abut the myriad side effects of steroids. At least I was warned that I would feel like a maniac. There were however, still some surprises in store for me. First I was shocked by how quickly and how much better I felt by the end of the infusion. Unfortunately I was also surprised by the gawd awful taste in my mouth and further by the fact that the taste hasn't gone away. Everything tastes like sweaty hairy ass right now and the only exception I found is sweet tea. This seems related to the paradoxical situation with food in general. I want to eat every thing in sight until I taste it and then I never want to eat again. I feel plain odd and fidgety and paranoid, but at least I have the energy to do all the Xmas Eve cleaning and cooking. The cooking's extra challenging today since I use recipes really just as suggestions and usually season to taste, and I'm making a traditional Italian Christmas Eve fish dinner for 12. Hope it tastes good to all my husband's Italian relatives, 'cause how the hell would I know?
Mostly I'm surprised that I'm having these issues at all. My husband says it's naive of me, but I really thought I could skate throught the 3 month wash out period with no meds before I start the Fingolimod trial without any detriment. Last night though I was laying in bed when someone snuck under the covers and locked my left arm in an invisible vice. I admit I panicked a little. I couldn't move my left wrist or hand at all, and there was an intense crushing sensation in my forearm. I got up and took the next dose of Medrol and it felt better this morning, but still not right. All the left sided ataxia from my last relapse had seemed to go away a few weeks ago so I don't know if this is NEW or OLD. Grrrr. Very frustrating.
On top of feeling creeped out and bizzaro, my neck and joints are hurting and I'm gonna blame it on the drugs and the MS because it's a beautiful 78 degree Xmas Eve here in Florida. I finally feel a little Christmas-y though at least so it's back to the holiday chaos now.
Wednesday, December 24, 2008
Wednesday, December 3, 2008
My day is totally kicking ass! Bring on the FINGO!
This is a good day. The sun is shining on this b-e-a-utiful Florida day and I'm back to feeling pretty good. I saw the neuro today and he gave me the thumbs up to join the Fingolimod trial taking place nearby. I thought for sure he'd be cross with me for quitting the Copaxone (I have to wash out for 3 months before starting the trial.), but he was totally into it. Turns out he used to do some clinical trials himself and used to chair the IRB (safety committee for medical research) at the hospital where we work. The nurse took a look at the lumps I was getting from the injections and said he would probably want to discontinue the Copaxone anyway. I don't know why really but I fully expected him to tell me I was a crackpot for risking myself with a un-FDA-approved drug and would chastise me for skipping the last two weeks of Copaxone. Instead, he was really supportive and gave me some good info about how clinical trials work. This encounter reaffirms my choice in neuros and confirms my addition of him and his staff to my Xmas card list.
I can't wait to get started in the trial. I know it's ridiculous, but I feel like I'm carrying on a family legacy by participating. My grandfather did a lot of medical research and invented a lot of really common medical products. As common as Hep-locks and prosthetic hips. My whole life my mother would occasionally get this weird look on her face and say, "You are JUST like my father." I never knew if it was a compliment or insult; they sometimes had a strained relationship. But I got to spend some time with him before he passed away, and I think she was right. He and I were/are similar in our analytical-ness and way of communicating. Plus, he was a dirty old Englishman and I think I may be the only person who really appreciated his sense of humor. I visited him once in rehab after a severe foot injury (diabetic neuropathy) that he got by driving his scooter like it was an ATV. I told him I was going to the store and asked if he'd like me to pick up anything. (He loved sugar-free hard candies.) So he says in his thick south UK accent, "Yes, love, could you get me a new ass?" And sucker that I am asked, "What's the matter with your ass?" And straight-faced, dry as hell he says, "It's cracked right down the middle." He got lotsa giggling and eye-rolling from me, but the nurse didn't even crack a smile. So either only I think that shit's funny, or she couldn't understand a word he said. Either way, he was a great guy and I know he would totally get behind me on this drug trial though he'd also pick apart the trial and riddle me with questions. He died before I was diagnosed but I know his respose would've been, "That's shit luck, that," and never have treated me any different. Might've even forgot all about it, or offered me his pogo stick (cane). He stayed savvy till the very end though and his will included donation of his remains to medical research. He was the one who convinced me to seek a career in medicine and radiology would be best because "It's all knob-twiddling and button-pushing. You love that stuff. Plus there's tons of advancements to come in the technology to keep you from getting bored. And since you live in Florida, where people go to get sick and die, you'll always have work." Sage advice from a very practical man.
And the second fantastic thing that happened today happened while I was in the shower. (No not that! Cheeky!) I'm in the shower and my hubs pops in and says, "Hey, a friend stopped by and needs to use the toilet. Do you mind if he comes in?" (We only have one bathroom.) And I'm wondering who it could be that my jealous husband trusts to be in the bathroom while I'm naked on the other side of a flimsy curtain and I hear, "Hallooo Julie!," in the sweet voice of my hubs' best friend of 30+ years. He's been away indefinitely on the other side of the world for way too long, and surprised us by coming home at last. He and my husband have the same weird-ass name (They're both named Shiva, after the Hindu god of destruction. Other Shiva used to date a girl also named Julie. Lemme tell ya, there was major confusion on the phone and lots of jokes about going into the wrong bedroom.), and are the reason "brotha from anotha motha" is the most common cliche in use around here. He is truly family, and our life is better when he's around. Anyway, I was so excited I had to fight the urge to jump out and hug him naked and dripping! Instead I just shrieked, "I love you!" and finished up as quickly as possible. He's been gone so long that it's dream-like to have him back in our presence. He is easily the luckiest sonofabitch I've ever known and hopefully it'll rub of on my Shiva in the way of some profittable employment. If not, I don't care, I'm stoked!
I can't wait to get started in the trial. I know it's ridiculous, but I feel like I'm carrying on a family legacy by participating. My grandfather did a lot of medical research and invented a lot of really common medical products. As common as Hep-locks and prosthetic hips. My whole life my mother would occasionally get this weird look on her face and say, "You are JUST like my father." I never knew if it was a compliment or insult; they sometimes had a strained relationship. But I got to spend some time with him before he passed away, and I think she was right. He and I were/are similar in our analytical-ness and way of communicating. Plus, he was a dirty old Englishman and I think I may be the only person who really appreciated his sense of humor. I visited him once in rehab after a severe foot injury (diabetic neuropathy) that he got by driving his scooter like it was an ATV. I told him I was going to the store and asked if he'd like me to pick up anything. (He loved sugar-free hard candies.) So he says in his thick south UK accent, "Yes, love, could you get me a new ass?" And sucker that I am asked, "What's the matter with your ass?" And straight-faced, dry as hell he says, "It's cracked right down the middle." He got lotsa giggling and eye-rolling from me, but the nurse didn't even crack a smile. So either only I think that shit's funny, or she couldn't understand a word he said. Either way, he was a great guy and I know he would totally get behind me on this drug trial though he'd also pick apart the trial and riddle me with questions. He died before I was diagnosed but I know his respose would've been, "That's shit luck, that," and never have treated me any different. Might've even forgot all about it, or offered me his pogo stick (cane). He stayed savvy till the very end though and his will included donation of his remains to medical research. He was the one who convinced me to seek a career in medicine and radiology would be best because "It's all knob-twiddling and button-pushing. You love that stuff. Plus there's tons of advancements to come in the technology to keep you from getting bored. And since you live in Florida, where people go to get sick and die, you'll always have work." Sage advice from a very practical man.
And the second fantastic thing that happened today happened while I was in the shower. (No not that! Cheeky!) I'm in the shower and my hubs pops in and says, "Hey, a friend stopped by and needs to use the toilet. Do you mind if he comes in?" (We only have one bathroom.) And I'm wondering who it could be that my jealous husband trusts to be in the bathroom while I'm naked on the other side of a flimsy curtain and I hear, "Hallooo Julie!," in the sweet voice of my hubs' best friend of 30+ years. He's been away indefinitely on the other side of the world for way too long, and surprised us by coming home at last. He and my husband have the same weird-ass name (They're both named Shiva, after the Hindu god of destruction. Other Shiva used to date a girl also named Julie. Lemme tell ya, there was major confusion on the phone and lots of jokes about going into the wrong bedroom.), and are the reason "brotha from anotha motha" is the most common cliche in use around here. He is truly family, and our life is better when he's around. Anyway, I was so excited I had to fight the urge to jump out and hug him naked and dripping! Instead I just shrieked, "I love you!" and finished up as quickly as possible. He's been gone so long that it's dream-like to have him back in our presence. He is easily the luckiest sonofabitch I've ever known and hopefully it'll rub of on my Shiva in the way of some profittable employment. If not, I don't care, I'm stoked!
Saturday, November 15, 2008
Holy crap! I'm buring and freezing!
My ass is hot! No really, it's wide but HOT! I've just done my 5th Copaxone injection, this one in my hip, and it's making my WHOLE ASS BURN. Is this for real? Have I accidentally sat on the iron again? No. Did I mistake the stove top for the desk chair? No silly, they don't make stoves out of leather. It must be that vial of evil I just shoved into my ample layers of subcutaneous fat. So far, I have had around 20 minutes of intense sting with each shot. Lumps in a variety of shapes, sizes, and firmnesses. The sites are sore for DAYS after. What the HELL?!
Listen, I am not chicken shit about needles. I have a lot of tattoos for Pete's sake (including on the ribs and feet, which some think are the most painful spots), and hardly flinched through a year and a half of Avonex injections. I can start an IV on myself with one hand, and would trust my husband to suture me if I ever needed it. So what am I doing wrong here? The alcohol is totally evaporated. I've tried compression, heat packs, and ice packs. I am not rubbing or scratching. And while I have limited square footage that doesn't have a scar, freckle, mole, tattoo, stretch mark, mosquito bite, or booboo nearby; I've managed to steer clear of all those things so far. I am still screwing this up somehow? The hubs thinks I'll get used to it after a while (he said, "I'm sure you won't notice it after a year or two. Then you can be in charge of all the wasps nests in the yard!"), but I find that VERY hard to believe.
At the same time, I'm freezing. Again.
I've always been one of those people who's always cold. My average temp is like, 97F. We live in sunny Florida, so when the DH turns the air lower and lower, I stack the fleece blankies higher and higher. When I lived up north with my folks for a winter, I shivered off 25 lbs. in one cold season. I got a mild case of frostbite as a kid and never seemed to warm up again. Until Avonex.
At first I would just be hot for a day or two post Avonex injection. For the last year however, I have been schvitzing hot ALL the time. Like, sweating bullets in the scan rooms at the hospital that have to be kept at 65F or lower so the machines don't overheat, kind of hot. I had a hysterectomy this year, but I kept my ovaries so it's not early menopause. I was pregnant during the 4 months of wildfires in '98 that rained ashes down on us, and even then I was not this hot. But I'm happy to report that after 4 weeks OFF Avonex, I'm not hot anymore! I've never heard anything about Avonex being related to increased body temp but I guess it makes sense for an interferon to have that effect. So I'm sitting here with a burning ass and frozen fingers, but altogether I'm happier and feel better than before. Maybe the Avonex was affecting my mood too.
Listen, I am not chicken shit about needles. I have a lot of tattoos for Pete's sake (including on the ribs and feet, which some think are the most painful spots), and hardly flinched through a year and a half of Avonex injections. I can start an IV on myself with one hand, and would trust my husband to suture me if I ever needed it. So what am I doing wrong here? The alcohol is totally evaporated. I've tried compression, heat packs, and ice packs. I am not rubbing or scratching. And while I have limited square footage that doesn't have a scar, freckle, mole, tattoo, stretch mark, mosquito bite, or booboo nearby; I've managed to steer clear of all those things so far. I am still screwing this up somehow? The hubs thinks I'll get used to it after a while (he said, "I'm sure you won't notice it after a year or two. Then you can be in charge of all the wasps nests in the yard!"), but I find that VERY hard to believe.
At the same time, I'm freezing. Again.
I've always been one of those people who's always cold. My average temp is like, 97F. We live in sunny Florida, so when the DH turns the air lower and lower, I stack the fleece blankies higher and higher. When I lived up north with my folks for a winter, I shivered off 25 lbs. in one cold season. I got a mild case of frostbite as a kid and never seemed to warm up again. Until Avonex.
At first I would just be hot for a day or two post Avonex injection. For the last year however, I have been schvitzing hot ALL the time. Like, sweating bullets in the scan rooms at the hospital that have to be kept at 65F or lower so the machines don't overheat, kind of hot. I had a hysterectomy this year, but I kept my ovaries so it's not early menopause. I was pregnant during the 4 months of wildfires in '98 that rained ashes down on us, and even then I was not this hot. But I'm happy to report that after 4 weeks OFF Avonex, I'm not hot anymore! I've never heard anything about Avonex being related to increased body temp but I guess it makes sense for an interferon to have that effect. So I'm sitting here with a burning ass and frozen fingers, but altogether I'm happier and feel better than before. Maybe the Avonex was affecting my mood too.
Monday, November 10, 2008
Thanksgiving comes early.
I think I may be starting to feel a little better! I'm still stupid tired and my left arm isn't exactly up to par, but I've been walking reliably for a few days and my head doesn't hurt so much. My neck is still killing me and since the radiologist I work with said my most recent MRI of my neck was "pristine," I don't know what to make of the pain. My mummy is taking me for a massage tomorrow though so maybe that'll help. And one of my smartest friends (she's a RN, she knows what I REALLY need) got me a gift certificate to our chiropractor for several adjustments for my bird-day. He actually DOUBLED the number she paid for when he found out who it was for!
Actually, I got many well-suited gifts for my 30th. Several GOOD bottles of wine. Several massage gift certs. A tattoo gift cert. A calendar from my son so I can write everything down and not forget him at school again. (A million times I am so sorry E!!!) Nice, relaxing aromatherapy girly stuffs. I got several lovely meals out of the weekend and a party with all my nearest and dearest mates. I gave myself the gift of a weekend off from work, and it was truly and thoroughly cherished.
More significantly, I got some much needed attitude adjustments. Several things have come up to make me grateful for the following:
~I am quite happily and stresslessly married and not at all concerned about whether or not MY husband is cheating on me. This is not the case for everyone in my life.
~I am relieved to be "out of the closet" with my boss. She chatted me up at lunch today about trial MS treatments and nutritional supplements without her face turning purple like it does when she's stressed or faking control-of-the-situation.
~This video from Lazy Julie's blog gave me some much needed perspective. I must stop being a whiney assfuck even if only in my own head.
~Two officers from the local police department (who were not my brother) gave me a great deal of assistance with an unruly patient in the ER today. Thus renewing my faith in THE MAN, extending beyond THE MAN that is my little brother.
~My bestie is having a baby tomorrow. And since we are so close as to have matching moles, there will finally be a brand new turd squirter in the world that I will have full rights to sniffing and snuggling as often as I like.
~Blindbeard used the term "penis wrinkle" in a recent hilarious blog, and that always lights me up.
~My fave aunt (don't tell my other aunties) is in town and she's requested that I take her to both the ashram (read: interfaith spiritual commune) were my hubby grew up AND the local porn-super-store. How much fun is this week going to be?
~And finally, the Health Insurance Rapists have agreed to cover the Copaxone that I will be able to start tomorow since my preferred pharmacy has agreed to provide me with it instead of having to go the the "specialty pharmacy" at the local looney bin. Seriously, they're only open to the public for 2 hours, 1 day a week. I hear it stings like a bee, but it at least it won't be such an arsebite to get my hands on the shit.
Actually, I got many well-suited gifts for my 30th. Several GOOD bottles of wine. Several massage gift certs. A tattoo gift cert. A calendar from my son so I can write everything down and not forget him at school again. (A million times I am so sorry E!!!) Nice, relaxing aromatherapy girly stuffs. I got several lovely meals out of the weekend and a party with all my nearest and dearest mates. I gave myself the gift of a weekend off from work, and it was truly and thoroughly cherished.
More significantly, I got some much needed attitude adjustments. Several things have come up to make me grateful for the following:
~I am quite happily and stresslessly married and not at all concerned about whether or not MY husband is cheating on me. This is not the case for everyone in my life.
~I am relieved to be "out of the closet" with my boss. She chatted me up at lunch today about trial MS treatments and nutritional supplements without her face turning purple like it does when she's stressed or faking control-of-the-situation.
~This video from Lazy Julie's blog gave me some much needed perspective. I must stop being a whiney assfuck even if only in my own head.
~Two officers from the local police department (who were not my brother) gave me a great deal of assistance with an unruly patient in the ER today. Thus renewing my faith in THE MAN, extending beyond THE MAN that is my little brother.
~My bestie is having a baby tomorrow. And since we are so close as to have matching moles, there will finally be a brand new turd squirter in the world that I will have full rights to sniffing and snuggling as often as I like.
~Blindbeard used the term "penis wrinkle" in a recent hilarious blog, and that always lights me up.
~My fave aunt (don't tell my other aunties) is in town and she's requested that I take her to both the ashram (read: interfaith spiritual commune) were my hubby grew up AND the local porn-super-store. How much fun is this week going to be?
~And finally, the Health Insurance Rapists have agreed to cover the Copaxone that I will be able to start tomorow since my preferred pharmacy has agreed to provide me with it instead of having to go the the "specialty pharmacy" at the local looney bin. Seriously, they're only open to the public for 2 hours, 1 day a week. I hear it stings like a bee, but it at least it won't be such an arsebite to get my hands on the shit.
Thursday, November 6, 2008
Birthday Bits
Today, I am 30 years old.
Yay Obama! Finally, I can feel proud to be an American again.
Happy belated Guy Fawkes Night! Wish I'd had an effigy to burn last night.
Two new lesions on my MRI. Switching to Copaxone from Avonex. Wish me luck.
Quit smoking. Not grumpy, mostly relieved, KNOW that I will be completely elated in a day or two.
Considering vegetarianism again. Meeting some resistance from the man of the house.
Started PT yesterday and had thought I was doing much better. The therapist proved to me that my left side is still retarded and even my right side is relapsing somewhat. Also brought into focus that I AM SO TIRED. Still.
I want really badly to be excited about my birthday. To either be happy or pissed about it would be fine, but this fatigue induced lethargy is downright depressing. My husband is in the kitchen making me a cake. He washed my car today and bought me a tattoo gift certificate. I unexpectedly got the day off and wasted all of it sleeping. My kids are gonna come home from long days of school and soccer/dance and still be really stoked and energized about my birthday. Why can I not bring myself to care? I completely hate myself today.
Yay Obama! Finally, I can feel proud to be an American again.
Happy belated Guy Fawkes Night! Wish I'd had an effigy to burn last night.
Two new lesions on my MRI. Switching to Copaxone from Avonex. Wish me luck.
Quit smoking. Not grumpy, mostly relieved, KNOW that I will be completely elated in a day or two.
Considering vegetarianism again. Meeting some resistance from the man of the house.
Started PT yesterday and had thought I was doing much better. The therapist proved to me that my left side is still retarded and even my right side is relapsing somewhat. Also brought into focus that I AM SO TIRED. Still.
I want really badly to be excited about my birthday. To either be happy or pissed about it would be fine, but this fatigue induced lethargy is downright depressing. My husband is in the kitchen making me a cake. He washed my car today and bought me a tattoo gift certificate. I unexpectedly got the day off and wasted all of it sleeping. My kids are gonna come home from long days of school and soccer/dance and still be really stoked and energized about my birthday. Why can I not bring myself to care? I completely hate myself today.
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.
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?
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?
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