Tuesday, January 11, 2005
Still twitchy....
Good thing I didn't take any more Mirapex, because I'm STILL experiencing an increase in the dyskinesia. Not as bad as some of my previous reactions, but definitely worse than what is the norm for me. I had to go in for the glucose tolerance test with my hands trembling and feeling like I was literally shaking from the inside out.
Every time this happens, I start to wonder if this is the time the exacerbation becomes permanent. So far, I have always improved to a point. I'll end up just a tiny bit worse than before, not noticeable to anyone but me....usually, it will be subtle occasional twitching in an area (like the back of an arm, or an eyelid or something) that hadn't been a problem before.
But until the reaction wears off, I'm a marionette without strings. Sometimes, a muscle will fire rapidly for several minutes, then stop, or the twitch will migrate somewhere else. Sometimes I show these spasms to Dan....it freaks him out a little.
One good thing about this reaction....I was too tired and out of it to get nervous about three blood draws in two hours. I'm a notoriously difficult draw, but I got a real pro today, thank goodness. She was even nice enough to collect enough for a thyroid follow up and a ferritin test so I wouldn't have to come back later this week to do them.
The glucose tolerance test is basically to determine whether or not you're diabetic (I have a family history, suspicious symptoms and fluctuating blood sugar). First, they draw your blood after you've fasted at least 8 hours. Then, you drink a very sweet substance that tastes like orange pop without the carbonation, and they draw your blood an hour later and again one more hour after that.
I can't really blame the test for wiping me out since I already felt crummy, but I was grateful Dan had driven because I was extra wobbly after that. I had a health bar in the car on the way home, but I could do nothing more after that but crawl into bed. I was too exhausted even to do any stretches to keep the twitches from cramping up.
I had to call in sick again tonight, second night in a row. Tomorrow, I absolutely MUST go to work or I will be written up. So I am trying to give my body nice healing messages.
You know you're in the pit when you find yourself looking a people with canes and wishing you had a visible means of letting others know that you are also physically frail and awkward. Not that I want to need a cane, really....but people don't quite know what to do with me because I appear so young and healthy at first sight (especially when my cheeks get an artificially rosy glow from the illness). I see their expressions change when they realize how slowly I move, and they immediately look at my feet to see what could be wrong.
I still haven't gotten up the guts to try an electric scooter in the store, even though walking exhausts me to the point where I almost can't make it back to the car even when it's parked in a handicapped spot. The reason is that I have no idea how to operate one and am too intimidated to ask. Maybe I still fear that someone will see me without a cane and make some rude comment that I don't need a scooter? Afraid someone will accuse me of being a fraud, of exaggerating my condition? Sometimes I get impatient with myself and wonder if I don't still have some reserve left in me that would allow me to move around normally for more than a few minutes, if I could just tap into it somehow. Does that make me a fraud?
I know I shouldn't care what others think; I am at least making use of the handicapped placard without too much guilt. I don't have much choice on some days....Dan even has to help me out of the car. On the warmer days when I won't be carrying anything extra to slow me down, I just take the regular spot. I am careful, too, to never take the last available handicapped spot in a lot in case someone with a wheelchair needs it, and I was FURIOUS today when I saw people at the hospital had parked in the striped areas next to the handicapped spots. Do they not care if a wheelchair-bound person cannot get into their vehicles because they cannot open their car door with an oversized SUV parked just inches away?? I wanted to call the cops and have the people parking in the striped areas ticketed or even towed. Maybe I should have.
Feeling rather pitiful tonight. Like my body is in charge rather than my brain. Like I'm letting myself down.
It will be better tomorrow. It must be better tomorrow.
Pain level: 9
Fatigue level: 9
Every time this happens, I start to wonder if this is the time the exacerbation becomes permanent. So far, I have always improved to a point. I'll end up just a tiny bit worse than before, not noticeable to anyone but me....usually, it will be subtle occasional twitching in an area (like the back of an arm, or an eyelid or something) that hadn't been a problem before.
But until the reaction wears off, I'm a marionette without strings. Sometimes, a muscle will fire rapidly for several minutes, then stop, or the twitch will migrate somewhere else. Sometimes I show these spasms to Dan....it freaks him out a little.
One good thing about this reaction....I was too tired and out of it to get nervous about three blood draws in two hours. I'm a notoriously difficult draw, but I got a real pro today, thank goodness. She was even nice enough to collect enough for a thyroid follow up and a ferritin test so I wouldn't have to come back later this week to do them.
The glucose tolerance test is basically to determine whether or not you're diabetic (I have a family history, suspicious symptoms and fluctuating blood sugar). First, they draw your blood after you've fasted at least 8 hours. Then, you drink a very sweet substance that tastes like orange pop without the carbonation, and they draw your blood an hour later and again one more hour after that.
I can't really blame the test for wiping me out since I already felt crummy, but I was grateful Dan had driven because I was extra wobbly after that. I had a health bar in the car on the way home, but I could do nothing more after that but crawl into bed. I was too exhausted even to do any stretches to keep the twitches from cramping up.
I had to call in sick again tonight, second night in a row. Tomorrow, I absolutely MUST go to work or I will be written up. So I am trying to give my body nice healing messages.
You know you're in the pit when you find yourself looking a people with canes and wishing you had a visible means of letting others know that you are also physically frail and awkward. Not that I want to need a cane, really....but people don't quite know what to do with me because I appear so young and healthy at first sight (especially when my cheeks get an artificially rosy glow from the illness). I see their expressions change when they realize how slowly I move, and they immediately look at my feet to see what could be wrong.
I still haven't gotten up the guts to try an electric scooter in the store, even though walking exhausts me to the point where I almost can't make it back to the car even when it's parked in a handicapped spot. The reason is that I have no idea how to operate one and am too intimidated to ask. Maybe I still fear that someone will see me without a cane and make some rude comment that I don't need a scooter? Afraid someone will accuse me of being a fraud, of exaggerating my condition? Sometimes I get impatient with myself and wonder if I don't still have some reserve left in me that would allow me to move around normally for more than a few minutes, if I could just tap into it somehow. Does that make me a fraud?
I know I shouldn't care what others think; I am at least making use of the handicapped placard without too much guilt. I don't have much choice on some days....Dan even has to help me out of the car. On the warmer days when I won't be carrying anything extra to slow me down, I just take the regular spot. I am careful, too, to never take the last available handicapped spot in a lot in case someone with a wheelchair needs it, and I was FURIOUS today when I saw people at the hospital had parked in the striped areas next to the handicapped spots. Do they not care if a wheelchair-bound person cannot get into their vehicles because they cannot open their car door with an oversized SUV parked just inches away?? I wanted to call the cops and have the people parking in the striped areas ticketed or even towed. Maybe I should have.
Feeling rather pitiful tonight. Like my body is in charge rather than my brain. Like I'm letting myself down.
It will be better tomorrow. It must be better tomorrow.
Pain level: 9
Fatigue level: 9
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