I need a signature phrase, like Emeril's BAM!," and I am thinking "klonk!"
I decided this in the shower after I sprayed my feet with too-wot water, which sent me lurching backward into my shower chair, which sent me rebounding forward so my forehead met the grab bar up close and personal.
My immediate thought upon cracking my head was "holy crap grab bars are solid." And yes, I know they have to be solid, but in my defense my brain had just been sloshed around.
I actually forgot all about this head-banging until I got home. I guess if I can walk away from an injury, or roll away, it is just not worth remembering.
Wednesday, November 28, 2007
Tuesday, November 27, 2007
Suck on this, depression
On a day when my antidepressant was getting back up to speed, a friend provided me almost all the energy and good feelings I needed.
I told her yesterday that my Thanksgiving was good but had ended poorly. I forgot to take some medicine, I told her, and felt horrible. She asked if I was OK and I told her yeah, except for my throbbing head.
She said she never knows how I feel because I always seem happy, more or less. I didn't hear her that well. I could not believe this, not because some was saying I seem happy (well, not just that) but because I has been meaning to talk to her about this very thing.
I was reading something she wrote last week about superheroes. She was talking about how we all have so much capacity for saving others, how there is courage in love.
The next night one of the aunts on "Pushing Daisies" talked about the heroism of a smile. "Daisies" probably strikes some people as hokey; I love it. Everyone is nice and kind, and Chuck is one of the cutest dead girls I have seen. It is a tossup between her and George. Why do cute dead girls have guy names?)
I told my friend I would rather have a cooler superpower than appearing happy but you take what you can get.
When I struggle with unhappiness, Mom tells me to smile even so. Not to ignore my feelings but for practice, she says, and who knows I might get used to it.
I guess I am getting used to it.
"I have never seen you not make the most of a day," my friend wrote me when I IM'd her to thank her. It was like when another friend called me "vibrant." These people see in me more than I realized was there.
Pretty astounding.
I told her yesterday that my Thanksgiving was good but had ended poorly. I forgot to take some medicine, I told her, and felt horrible. She asked if I was OK and I told her yeah, except for my throbbing head.
She said she never knows how I feel because I always seem happy, more or less. I didn't hear her that well. I could not believe this, not because some was saying I seem happy (well, not just that) but because I has been meaning to talk to her about this very thing.
I was reading something she wrote last week about superheroes. She was talking about how we all have so much capacity for saving others, how there is courage in love.
The next night one of the aunts on "Pushing Daisies" talked about the heroism of a smile. "Daisies" probably strikes some people as hokey; I love it. Everyone is nice and kind, and Chuck is one of the cutest dead girls I have seen. It is a tossup between her and George. Why do cute dead girls have guy names?)
I told my friend I would rather have a cooler superpower than appearing happy but you take what you can get.
When I struggle with unhappiness, Mom tells me to smile even so. Not to ignore my feelings but for practice, she says, and who knows I might get used to it.
I guess I am getting used to it.
"I have never seen you not make the most of a day," my friend wrote me when I IM'd her to thank her. It was like when another friend called me "vibrant." These people see in me more than I realized was there.
Pretty astounding.
Monday, November 26, 2007
Back to normal
I seem to have mostly recovered from missing a dose of my antidepressant, except for a headache and a little dizziness.
It is quite scary to feel that bad without drugs, and some have said that it shows how much I need them. But I know that's not right. I was not that depressed that pretty much everything I saw made me cry. I think I would be fine now without drugs. I think Claren is why tI am not depressed. But I probably will not know, at least for a while.
I found lots of testimonials on the Web that said how awful it is to stop taking Effexor. I think I will talk to my doctor, though, I suspect her reply will be: You're not depressed, you've got no real reason to stop taking Effexor, so just pop those pills. More or less. Dr. B might not say "pop those pills."
It is quite scary to feel that bad without drugs, and some have said that it shows how much I need them. But I know that's not right. I was not that depressed that pretty much everything I saw made me cry. I think I would be fine now without drugs. I think Claren is why tI am not depressed. But I probably will not know, at least for a while.
I found lots of testimonials on the Web that said how awful it is to stop taking Effexor. I think I will talk to my doctor, though, I suspect her reply will be: You're not depressed, you've got no real reason to stop taking Effexor, so just pop those pills. More or less. Dr. B might not say "pop those pills."
Sunday, November 25, 2007
Not thankful for this
I had a bad day today.
It was not a surprise. I am not allowed to have so many consecutive days when the good outweighs the bad.
Mostly, though, it was not a surprise because I forgot to take my antidepressant. And it floored me.
The tiredness, the sadness, the anger, the head-throbbing pain, the ringing in my ears ... It was all there.
I did have reasons: I was tired; my brothers and sisters and their families were going home; Claren did eat one of the several presents her cousin left behind in Claren's pen; I had not showered in a few days ...
So after bursting into tears, I agreed with mom to just stay at my folks house and sleep all day, which is what I did.
The only good part of the day, other than my understanding parents, was when I first got on to the floor to nap. Claren must have known I was suffering, and she tried to lay in my lap. And whenever I asked her to moved, she would just re-settle into my lap.
Of course, she did eat something nasty earlier so I am not sure I should have been so welcoming with her.
It was not a surprise. I am not allowed to have so many consecutive days when the good outweighs the bad.
Mostly, though, it was not a surprise because I forgot to take my antidepressant. And it floored me.
The tiredness, the sadness, the anger, the head-throbbing pain, the ringing in my ears ... It was all there.
I did have reasons: I was tired; my brothers and sisters and their families were going home; Claren did eat one of the several presents her cousin left behind in Claren's pen; I had not showered in a few days ...
So after bursting into tears, I agreed with mom to just stay at my folks house and sleep all day, which is what I did.
The only good part of the day, other than my understanding parents, was when I first got on to the floor to nap. Claren must have known I was suffering, and she tried to lay in my lap. And whenever I asked her to moved, she would just re-settle into my lap.
Of course, she did eat something nasty earlier so I am not sure I should have been so welcoming with her.
Wednesday, November 21, 2007
This Republican rocks
In October of my third year in college, Mom, my brother and I headed down to Emory University in Atlanta for a bunch of medical tests. Emory had a mitochondria lab, and doctors thought maybe my brother and I had something screwy with our mitochondria.
There was no test for Friedreich's ataxia, and doctors had no clue. They would see me and say: Oh, you clearly have FA. Then they would see my brother and said: Cleary, he doesn't, so you don't either because brothers would not have different ataxias.
Turns out they were right and wrong. Yes, we brother don't have different ataxias but no, my brother really did have FA, apparently just not a text-book case like mine (I so rock).
But that was years later, back to Emory.
The feature test was a muscle biopsy. My only complaint now after 16 years is the same as the one I had back then: They did it too neat so it is hard to see. The other tests included a lumbar puncture, blood work (passed out for that) and 24-hour urine collection. I know one of Mom's memories is walking to our motel near the hospital with these two empty jugs in her hands.
The doctors learned nothing from these tests, and our insurance company decided these tests were not diagnostic but exploratory. And they would not pay. Jerks.
After going back and forth with them, Mom called her congressman to try to get some help. Frank Wolf assigned a staffer to look into it as I recall, and the issue was settled. I don't know if Frank did anything, but I never forgot it. Perhaps, that is why I emailed him after the hellacious para-transit trip.
I like to think I am in a détente with the para-transit company. I had a very unsatisfactory complaint call about that trip, but then my brother, who now works with disability issues, gave me the email of an exec at the company. She seemed to shake some heads, so things have been better lately, not perfect, but better.
Yesterday I got a call about the hellacious trip again. This time, the woman was quite apologetic. I found out why when I got my mail.
I had a letter from Congressman Wolf, who said he asked for a status report on the situation from the company. Maybe I should ask him to find out why God allowed this disease to strike me. Fighting Frank might get an answer.
There was no test for Friedreich's ataxia, and doctors had no clue. They would see me and say: Oh, you clearly have FA. Then they would see my brother and said: Cleary, he doesn't, so you don't either because brothers would not have different ataxias.
Turns out they were right and wrong. Yes, we brother don't have different ataxias but no, my brother really did have FA, apparently just not a text-book case like mine (I so rock).
But that was years later, back to Emory.
The feature test was a muscle biopsy. My only complaint now after 16 years is the same as the one I had back then: They did it too neat so it is hard to see. The other tests included a lumbar puncture, blood work (passed out for that) and 24-hour urine collection. I know one of Mom's memories is walking to our motel near the hospital with these two empty jugs in her hands.
The doctors learned nothing from these tests, and our insurance company decided these tests were not diagnostic but exploratory. And they would not pay. Jerks.
After going back and forth with them, Mom called her congressman to try to get some help. Frank Wolf assigned a staffer to look into it as I recall, and the issue was settled. I don't know if Frank did anything, but I never forgot it. Perhaps, that is why I emailed him after the hellacious para-transit trip.
I like to think I am in a détente with the para-transit company. I had a very unsatisfactory complaint call about that trip, but then my brother, who now works with disability issues, gave me the email of an exec at the company. She seemed to shake some heads, so things have been better lately, not perfect, but better.
Yesterday I got a call about the hellacious trip again. This time, the woman was quite apologetic. I found out why when I got my mail.
I had a letter from Congressman Wolf, who said he asked for a status report on the situation from the company. Maybe I should ask him to find out why God allowed this disease to strike me. Fighting Frank might get an answer.
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