Thursday, June 23, 2011
Monday, May 30, 2011
Invictus
Invictus
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.
William Ernest Henley
http://www.poemhunter.com/poem/invictus/
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.
William Ernest Henley
http://www.poemhunter.com/poem/invictus/
Tuesday, April 12, 2011
eventful
This is a very eventful post! I got the decision letter for SSI today! They found that I met the rules of the program—I just have to call and provide them with current financial information. I'm so excited! I thought SSDI and SSI were the same decision—apparently not, because SSDI denied me—that's still an odd one that stumps everyone. I'm so thrilled—at least I will be able to cover my utilities! I also qualified for the gas assistance program, which will really help. I got my financial info together in about five minutes!
I saw the neurologist about a week ago. I hadn't seen one since the ICU, so long overdue. It was fantastic—she met with me for about two hours! She really got the ball rolling—I have to have a TEE (I think that's the one)—still trying to rule out any cause—if they can't find one, I might not have to stay on Coumadin for life! All I will say on the issue is that I was on ortho-tricyclen for the majority of eight years, and never had any cardio-cerebral events—I was on Yaz for two years and I had one massive stroke and evidence of one previous stroke, I was 29. Draw your own conclusions.
The neurologist is sending me to vestibular therapy and a psychiatrist. She also recommended a pulminologist. She was wonderful, and I feel less crazy now! I have a horrible time with imbalance and vertigo. I also seem to have trouble with spacial awareness—I can't handle tall ceilings, floors with geometric patterns or high reflection, suddenly turning a corner into an unexpectedly much larger space, etc. I was really starting to feel like it was all figment of my imagination—I mean, really, geometric patterns (strong organic patterns don't cause a problem)??!! (And I tend to think that I'm creating my own physical issues—I mean, come on, when I fell out of bed, paralyzed, I thought I just wasn't trying hard enough to move.) But apparently, the geometric pattern thing is something that happens—usually with damage to the cerebellum or Parkinson's disease. So maybe the MRI evidence of a previous event in the cerebellum is coming to haunt me? She's getting the MRI's from the hospital—that should prove really informative—I was pretty out of it the first time around.
The psychiatrist is because my social anxiety has gotten so ridiculous—the thought of having to make a phone call makes me nauseous and causes insomnia; even interacting with friends gets overwhelming some days. I'm so insecure about decisions and interactions with people—my parents' asked if I wanted to go with them up to their cottage for the weekend, and I didn't really—but saying so actually made me light headed. She diagnosed agoraphobia and thinks it should be easily dealt with—I think she is insanely optimistic with that theory!
The swallowing and speaking are still maintaining really well—"graduating" from speech therapy hasn't weakened my abilities at all. I realized last night that my typing (correct) ability is finally coming back, although I still tend to leave out letters when I hand-write. The Amitriptiline has done wonders for helping me control the emotional roller coaster. I can actually stop crying now (usually), without Xanax.
I think that's all the major stuff!
I saw the neurologist about a week ago. I hadn't seen one since the ICU, so long overdue. It was fantastic—she met with me for about two hours! She really got the ball rolling—I have to have a TEE (I think that's the one)—still trying to rule out any cause—if they can't find one, I might not have to stay on Coumadin for life! All I will say on the issue is that I was on ortho-tricyclen for the majority of eight years, and never had any cardio-cerebral events—I was on Yaz for two years and I had one massive stroke and evidence of one previous stroke, I was 29. Draw your own conclusions.
The neurologist is sending me to vestibular therapy and a psychiatrist. She also recommended a pulminologist. She was wonderful, and I feel less crazy now! I have a horrible time with imbalance and vertigo. I also seem to have trouble with spacial awareness—I can't handle tall ceilings, floors with geometric patterns or high reflection, suddenly turning a corner into an unexpectedly much larger space, etc. I was really starting to feel like it was all figment of my imagination—I mean, really, geometric patterns (strong organic patterns don't cause a problem)??!! (And I tend to think that I'm creating my own physical issues—I mean, come on, when I fell out of bed, paralyzed, I thought I just wasn't trying hard enough to move.) But apparently, the geometric pattern thing is something that happens—usually with damage to the cerebellum or Parkinson's disease. So maybe the MRI evidence of a previous event in the cerebellum is coming to haunt me? She's getting the MRI's from the hospital—that should prove really informative—I was pretty out of it the first time around.
The vestibular therapy is fantastic! I've only been once, but I am super confident about it. My therapist spent about an hour and a half on evaluation and she has some more to complete—she's establishing EXACTLY what triggers it. She didn't act like any of my symptoms were crazy—she seemed to really know what she was doing...it seemed much more scientific than any of my previous PT. I go again thursday—I'm actually excited!
The psychiatrist is because my social anxiety has gotten so ridiculous—the thought of having to make a phone call makes me nauseous and causes insomnia; even interacting with friends gets overwhelming some days. I'm so insecure about decisions and interactions with people—my parents' asked if I wanted to go with them up to their cottage for the weekend, and I didn't really—but saying so actually made me light headed. She diagnosed agoraphobia and thinks it should be easily dealt with—I think she is insanely optimistic with that theory!
The swallowing and speaking are still maintaining really well—"graduating" from speech therapy hasn't weakened my abilities at all. I realized last night that my typing (correct) ability is finally coming back, although I still tend to leave out letters when I hand-write. The Amitriptiline has done wonders for helping me control the emotional roller coaster. I can actually stop crying now (usually), without Xanax.
I think that's all the major stuff!
Saturday, March 19, 2011
Friday, January 14, 2011
The Tide Is Turning
I feel like the tide is turning—I'm finally rising out of this disaster. I really want a phoenix tattoo to commemorate, but tattoo+Coumadin=not a great idea. Apparently, it's pretty pointless because the increased bleeding means the ink doesn't stick :-( Ahh, well...Next to not being able to have kids (my own, anyway) and the risk of internal bleeding, that's really not so much of a hardship. I know switching to Plavix would eliminate those issues, but not being able to monitor it just scares me. Besides, they picked Coumadin at the hospital—maybe for no real reason, but I'm not switching until I know that. I doubt you get more than one free pass from dying per lifetime. Plavix and Coumadin both seem pretty high-risk, so I'm not too worried about which is the lesser evil, at the moment—ask me in 10 years, I might have a different reply.
Anyway, to the point—speech therapy is going well. We've finished focusing on my speech and were going to focus on the swallowing. The therapist also mentioned, and the ENT concurred, seeing a pulminologist. I'm still having trouble with breathing/lung capacity and, apparently, any time you've been on a ventilator its a good idea. So, I'll get a referral for that when I go back to my gp this month. I'm still not thrilled with my speech, but it's the best it can be at this time—I have to be patient. It may never be where it was, but I'll keep learning to work around it.
I've started doing self-hypnosis—my rehab doctor recommended to try it to help the excessive startling. It hasn't had any real effect on that, but it's been good for me mentally. I've been really working on facing life again. And, frankly, I like myself better than before the stroke. I'm a whole lot less forgiving, but I'm so much stronger. My new year's resolution was to quit apologizing for myself and just be me. It's been sticking, and I feel more confident than I ever have. I mean, really, when you've come resigned to hell, what can anyone really do to you? I came to terms with dying—I didn't and don't want to, but I have already had to accept that. Then the concept of being locked-in—being a perfectly fine person consciously trapped in a body that can't even breathe for itself—is close to my worst fear. Being buried alive always struck me as the worst torture—but even with that there is an end near in sight. I was lucky and the doctors were so wrong, but I had come to terms with living like that as well. And being only 30, and unaware that they had predicted a year at best, I came to terms with at least forty years of living like that. Then add paranoid delusions from the medications and intense pain from the fall, and I really think you have a nightmare that makes most pale in comparison. Finally facing that memory and letting myself remember it, has helped me embrace living. Some days I don't know how I'll make it, and some days I get lost in the grief and depression, but I survive those days. So I am who I am, and anyone's issue with that really isn't mine to deal with.
To that tune, I have gotten back to writing, and embraced the edgier side of my creativity. Regardless of Disability determinations, I cannot go back to a traditional, full-time job—writing is the only career that I can see fitting what I can do. Everyone keeps asking me if I'll ever really "get better." Truth be told, no one has a clue. I've decided to reclaim my future and I've finally acknowledged to myself that I'll never have the life I had, and it's time to quit bemoaning and just move on. Writing represents my acceptance of a different and uncertain future. It's the only way I know I can reclaim independence, whether I get "all better" or not.
So happy new year to all—don't be afraid to reclaim your life if it needs reclaiming!
Anyway, to the point—speech therapy is going well. We've finished focusing on my speech and were going to focus on the swallowing. The therapist also mentioned, and the ENT concurred, seeing a pulminologist. I'm still having trouble with breathing/lung capacity and, apparently, any time you've been on a ventilator its a good idea. So, I'll get a referral for that when I go back to my gp this month. I'm still not thrilled with my speech, but it's the best it can be at this time—I have to be patient. It may never be where it was, but I'll keep learning to work around it.
I've started doing self-hypnosis—my rehab doctor recommended to try it to help the excessive startling. It hasn't had any real effect on that, but it's been good for me mentally. I've been really working on facing life again. And, frankly, I like myself better than before the stroke. I'm a whole lot less forgiving, but I'm so much stronger. My new year's resolution was to quit apologizing for myself and just be me. It's been sticking, and I feel more confident than I ever have. I mean, really, when you've come resigned to hell, what can anyone really do to you? I came to terms with dying—I didn't and don't want to, but I have already had to accept that. Then the concept of being locked-in—being a perfectly fine person consciously trapped in a body that can't even breathe for itself—is close to my worst fear. Being buried alive always struck me as the worst torture—but even with that there is an end near in sight. I was lucky and the doctors were so wrong, but I had come to terms with living like that as well. And being only 30, and unaware that they had predicted a year at best, I came to terms with at least forty years of living like that. Then add paranoid delusions from the medications and intense pain from the fall, and I really think you have a nightmare that makes most pale in comparison. Finally facing that memory and letting myself remember it, has helped me embrace living. Some days I don't know how I'll make it, and some days I get lost in the grief and depression, but I survive those days. So I am who I am, and anyone's issue with that really isn't mine to deal with.
To that tune, I have gotten back to writing, and embraced the edgier side of my creativity. Regardless of Disability determinations, I cannot go back to a traditional, full-time job—writing is the only career that I can see fitting what I can do. Everyone keeps asking me if I'll ever really "get better." Truth be told, no one has a clue. I've decided to reclaim my future and I've finally acknowledged to myself that I'll never have the life I had, and it's time to quit bemoaning and just move on. Writing represents my acceptance of a different and uncertain future. It's the only way I know I can reclaim independence, whether I get "all better" or not.
So happy new year to all—don't be afraid to reclaim your life if it needs reclaiming!
Monday, January 3, 2011
New Year
It seems I'm always apologizing for not writing on here. I had to think about my purpose and realize that really its not a big deal not to write all the time—the point of this blog is to make other survivors feel less alone. When I had my stroke, I couldn't find much on brainstem stroke survivors—probably because not many victims survive. I was completely clueless—I new very little about any kind of stroke, and the more common, one-sided kind, seemed to much more covered. It finally sunk in the other day–someone commented that the symptoms I described sounded more like traumatic brain injury than stroke, and I realized she was right.
Anyway, I write as I feel the need and to comment on major events. And that IS the point.
It's a new year. In 3 days it will be exactly 1.5 years since the stroke started. In "celebration" and for the new year, I have a resolution: complain more. It's been brought to my attention that I try to be, I don't know, stoic or positive when I see the doctors. I think I have two main problems--I'm very private and how bad things are is completely relative. I mean, really, after laying on the floor, coninced I'm dying, with such bad bad neck pain it feels broken, but knowing I have to turn my head or asphixiate, makes a little back pain seem not worth mentioning. But not mentioning those things leaves the doctors obvious and thinking I'm fine. I'm not fine, and I need to let the people who can help me know. Otherwise, it's not stoic, it's stupid.
Finally: update—I met with the disability lawyer. She was very nice and competent seeming, but having to go over the stroke over and over is just getting too stressful. I had to take half a Xanax, then slept for several hours when I got home. 2-4 years til it's resolved—so basically, I get to drain my parents dry for 2-4 years. Excellent. Because being a parasite was my life's dream. Fate's a bitch. But it is what is—there's no redo—at least this is forward movement.
- Posted using BlogPress from my iPad
Anyway, I write as I feel the need and to comment on major events. And that IS the point.
It's a new year. In 3 days it will be exactly 1.5 years since the stroke started. In "celebration" and for the new year, I have a resolution: complain more. It's been brought to my attention that I try to be, I don't know, stoic or positive when I see the doctors. I think I have two main problems--I'm very private and how bad things are is completely relative. I mean, really, after laying on the floor, coninced I'm dying, with such bad bad neck pain it feels broken, but knowing I have to turn my head or asphixiate, makes a little back pain seem not worth mentioning. But not mentioning those things leaves the doctors obvious and thinking I'm fine. I'm not fine, and I need to let the people who can help me know. Otherwise, it's not stoic, it's stupid.
Finally: update—I met with the disability lawyer. She was very nice and competent seeming, but having to go over the stroke over and over is just getting too stressful. I had to take half a Xanax, then slept for several hours when I got home. 2-4 years til it's resolved—so basically, I get to drain my parents dry for 2-4 years. Excellent. Because being a parasite was my life's dream. Fate's a bitch. But it is what is—there's no redo—at least this is forward movement.
- Posted using BlogPress from my iPad
Wednesday, December 15, 2010
Catch-up
I've been really bad about keeping up on this blog. It's been slow, but with some dramatic highs and lows, particularly being denied SSDI. I had a physical for that, which was pretty run of the mill. About a month ago, I got thrush again; I went through a week's course of Diflucan, and my speech therapist thought I still had it, I went on Klack's Solution for 14 days. She thought I still had it, so I finally saw the ENT. Turned out, I just have a geographic tongue. Definitely beats a messed-up immune system!
I still fight the fatigue every day, but my endurance is getting slowly better. My speech is also really improving after seeing the therapist twice a week for just over a month—my swallowing has also improved—I went from choking a couple of times a day to choking only every other day or so. My therapist has been using the Vita Stim—I really think it helps a lot. I know the effectiveness of Vita Stim/e stim is hotly debated, but I firmly believed that it has played a big role in waking up my muscles.
I'm trying not to think about the SSDI denial, but when it does sneak in my brain, it still makes me really angry. Thank goodness for my family—without them, depending solely on the government, I would be homeless. In all fairness, though, the county has really pulled through with DFA, Medicaid, and food stamps. As to working, I've been wracking my brain about suitable jobs. Yes, everyone tells me you get denied,then usually qualify through an appeal with a lawyer, but appeals take 2-3 years. Unless I can think of a brilliant scheme for making my first million, that's 2-3 more years of mooching off my parents. I'm 31—mooching is just too sad!
Ah, well, I get a little better every day. It could be so much better, but it could be so much worse!
I still fight the fatigue every day, but my endurance is getting slowly better. My speech is also really improving after seeing the therapist twice a week for just over a month—my swallowing has also improved—I went from choking a couple of times a day to choking only every other day or so. My therapist has been using the Vita Stim—I really think it helps a lot. I know the effectiveness of Vita Stim/e stim is hotly debated, but I firmly believed that it has played a big role in waking up my muscles.
I'm trying not to think about the SSDI denial, but when it does sneak in my brain, it still makes me really angry. Thank goodness for my family—without them, depending solely on the government, I would be homeless. In all fairness, though, the county has really pulled through with DFA, Medicaid, and food stamps. As to working, I've been wracking my brain about suitable jobs. Yes, everyone tells me you get denied,then usually qualify through an appeal with a lawyer, but appeals take 2-3 years. Unless I can think of a brilliant scheme for making my first million, that's 2-3 more years of mooching off my parents. I'm 31—mooching is just too sad!
Ah, well, I get a little better every day. It could be so much better, but it could be so much worse!
Tuesday, December 14, 2010
Catch-up
I've been really bad about keeping up on this blog. It's been slow, but with some dramatic highs and lows, particularly being denied SSDI. I had a physical for that, which was pretty run of the mill. About a month ago, I got thrush again; I went through a week's course of Diflucan, and my speech therapist thought I still had it, I went on Klack's Solution for 14 days. She thought I still had it, so I finally saw the ENT. Turned out, I just have a geographic tongue. Definitely beats a messed-up immune system!
I still fight the fatigue every day, but my endurance is getting slowly better. My speech is also really improving after seeing the therapist twice a week for just over a month—my swallowing has also improved—I went from choking a couple of times a day to choking only every other day or so. My therapist has been using the Vita Stim—I really think it helps a lot. I know the effectiveness of Vita Stim/e stim is hotly debated, but I firmly believed that it has played a big role in waking up my muscles.
I'm trying not to think about the SSDI denial, but when it does sneak in my brain, it still makes me really angry. Thank goodness for my family—without them, depending solely on the government, I would be homeless. In all fairness, though, the county has really pulled through with DFA, Medicaid, and food stamps. As to working, I've been wracking my brain about suitable jobs. Yes, everyone tells me you get denied,then usually qualify through an appeal with a lawyer, but appeals take 2-3 years. Unless I can think of a brilliant scheme for making my first million, that's 2-3 more years of mooching off my parents. I'm 31—mooching is just too sad!
Ah, well, I get a little better every day. It could be so much better, but it could be so much worse!
I still fight the fatigue every day, but my endurance is getting slowly better. My speech is also really improving after seeing the therapist twice a week for just over a month—my swallowing has also improved—I went from choking a couple of times a day to choking only every other day or so. My therapist has been using the Vita Stim—I really think it helps a lot. I know the effectiveness of Vita Stim/e stim is hotly debated, but I firmly believed that it has played a big role in waking up my muscles.
I'm trying not to think about the SSDI denial, but when it does sneak in my brain, it still makes me really angry. Thank goodness for my family—without them, depending solely on the government, I would be homeless. In all fairness, though, the county has really pulled through with DFA, Medicaid, and food stamps. As to working, I've been wracking my brain about suitable jobs. Yes, everyone tells me you get denied,then usually qualify through an appeal with a lawyer, but appeals take 2-3 years. Unless I can think of a brilliant scheme for making my first million, that's 2-3 more years of mooching off my parents. I'm 31—mooching is just too sad!
Ah, well, I get a little better every day. It could be so much better, but it could be so much worse!
Saturday, December 4, 2010
SSDI
I was denied SSDI.
I don't know why I feel so upset. I knew it was a likely outcome Not good on 1.5 hr sleep. Oh well, on to 2-3 years of appeals.
They acknowledge that I can't work my previous jobs. Apparently I'm supposed to find a non-physical, non-stressful job. Um, do they work????? And all my education deals with my previous jobs. So non-physical, non-stressful, and no education required. Riiiiiight.
It took almost a year to make that decision???
What the hell job am I supposed to work?????? Non-stressful!!!! Nice fantasy. I have neurological and psychological damage. Pretty straightforward.
L
- Posted using BlogPress from my iPhone
I don't know why I feel so upset. I knew it was a likely outcome Not good on 1.5 hr sleep. Oh well, on to 2-3 years of appeals.
They acknowledge that I can't work my previous jobs. Apparently I'm supposed to find a non-physical, non-stressful job. Um, do they work????? And all my education deals with my previous jobs. So non-physical, non-stressful, and no education required. Riiiiiight.
It took almost a year to make that decision???
What the hell job am I supposed to work?????? Non-stressful!!!! Nice fantasy. I have neurological and psychological damage. Pretty straightforward.
L
- Posted using BlogPress from my iPhone
Sunday, October 24, 2010
Drug lowers risk of second stroke - Times Online
Drug lowers risk of second stroke - Times Online: "e likely to change the way patients were treated after a stroke. Up to 40 per cent of people who have a stroke will have a second within five years. Often, the second is worse, resulting in death or disablement."
This is the most terrifying thing that I have ever read in my life. I take comfort in that 18% appears to be the more common statistic—but even that is terrifying. This article is about using Lipitor to reduce the likelihood of a second stroke—got to take this to my doctor tomorrow.
More articles:
And the downside:
Saturday, October 16, 2010
Disability Financial Assistance
I got approved for Disability Financial Assistance from Job & Family Services! Yay! A whole $115/month, but still—MONEY. It's so freeing. I can buy toiletries and such AND NOT FEEL GUILTY!
I'm still waiting on Social Security—I have to go have a physical next week—apparently the 50 some doctors who saw me were not enough... LOL. Ah, well, this has got to be the last step—they've gotten my medical records and I've had a psych eval. I should have sent them my new gp's contact info, but I didn't even think about it. Oh well, I'm not really worried—especially if I keep falling and breaking tables, as I seem to be doing constantly, lately—at this rate, I'll be a solid bruise for the appointment! I just want this stress off my mind—and to actually be able to pay my own bills—no mooching! LOL.
I just sent off my application for Ohio HEAP yesterday, too—so fingers crossed! The only thing that worries me is that I sent the info from the Disability Financial Assistance, since SSI hasn't reached a decision yet, and it talked about using SSI as evidence. Seems like DFA would be just as solid of evidence, though—guess we'll see!
I'm still waiting on Social Security—I have to go have a physical next week—apparently the 50 some doctors who saw me were not enough... LOL. Ah, well, this has got to be the last step—they've gotten my medical records and I've had a psych eval. I should have sent them my new gp's contact info, but I didn't even think about it. Oh well, I'm not really worried—especially if I keep falling and breaking tables, as I seem to be doing constantly, lately—at this rate, I'll be a solid bruise for the appointment! I just want this stress off my mind—and to actually be able to pay my own bills—no mooching! LOL.
I just sent off my application for Ohio HEAP yesterday, too—so fingers crossed! The only thing that worries me is that I sent the info from the Disability Financial Assistance, since SSI hasn't reached a decision yet, and it talked about using SSI as evidence. Seems like DFA would be just as solid of evidence, though—guess we'll see!
Friday, October 15, 2010
Poem: Crying
Crying
Life, neat.
panic attacks
fear of everything
Fear becoming reality
Begging bartering
Let me live
Was it what I wanted?
Fear quadrupled.
living dying falling
people
dying
living
Life, spiked.
please just end the panic
take away the dark
that is all
there is
to ask
all
I've
ever
asked.
panic attacks
fear of everything
Fear becoming reality
Begging bartering
Let me live
Was it what I wanted?
Fear quadrupled.
living dying falling
people
dying
living
Life, spiked.
please just end the panic
take away the dark
that is all
there is
to ask
all
I've
ever
asked.
Rage
I AM NOT FAKING. I AM NOT EXAGGERATING. I AM NOT MILKING IT. That's the frigging attitude that made this so bad. If I didn't tell myself I was just whining and imagining something wrong, it would have been a minor stroke because it could have been stopped before the paralysis. The stoke took about 24 hours. I debated calling 911 several times, but instead I mocked myself for being weak.
And if one more tells me I was lucky, I'm going to snap. Dying would have been easy—living is the hell. I do realize how lucky I was. But it just doesn't feel that way. So you telling me I should be grateful is really crap. It's perspective. So when you have your life ripped out from underneath you, we can talk. It could have been much worse. But it also could have been much better. No 31 yr old in their right mind would be full of gratitude if they lived but became a six year old all over again.
And sometimes my deficiencies JUST AREN'T FUNNY. They break something inside of me every time I'm aware of them. And when I have an emotional breakdown, I'm feeling the agony. Ignoring it DOES NOT help. I just want someone to care. I'm so tired.
Pushing me to "help" me be an better person is not a good idea now. If I say that I can't deal with something, I MEAN I CAN'T DEAL WITH IT. NOT I don't want to. And, yes, you can jump in and save my ass—leaving me to flounder IS NOT HELPING. When I say I am tired or emotional, that means I NEED TO STOP. If I say I need to leave, I don't mean soon—I mean NOW. I will have a meltdown, And if the meltdown is in public, it's A HUNDRED TIMES MORE DAMAGING. And another piece of my confidence is gone. THOSE PIECES DON'T COME BACK. I am an emotional mess and I will be for a long time. THAT'S NOT WEAKNESS. That's the bitch of what happened. So, yes, dying would have been the easier choice—just help me get through this choice. Sometimes the pain is just too much, and I regret the choice I made. I don't want to regret it.
ONLINE SUPPORT
And if one more tells me I was lucky, I'm going to snap. Dying would have been easy—living is the hell. I do realize how lucky I was. But it just doesn't feel that way. So you telling me I should be grateful is really crap. It's perspective. So when you have your life ripped out from underneath you, we can talk. It could have been much worse. But it also could have been much better. No 31 yr old in their right mind would be full of gratitude if they lived but became a six year old all over again.
And sometimes my deficiencies JUST AREN'T FUNNY. They break something inside of me every time I'm aware of them. And when I have an emotional breakdown, I'm feeling the agony. Ignoring it DOES NOT help. I just want someone to care. I'm so tired.
Pushing me to "help" me be an better person is not a good idea now. If I say that I can't deal with something, I MEAN I CAN'T DEAL WITH IT. NOT I don't want to. And, yes, you can jump in and save my ass—leaving me to flounder IS NOT HELPING. When I say I am tired or emotional, that means I NEED TO STOP. If I say I need to leave, I don't mean soon—I mean NOW. I will have a meltdown, And if the meltdown is in public, it's A HUNDRED TIMES MORE DAMAGING. And another piece of my confidence is gone. THOSE PIECES DON'T COME BACK. I am an emotional mess and I will be for a long time. THAT'S NOT WEAKNESS. That's the bitch of what happened. So, yes, dying would have been the easier choice—just help me get through this choice. Sometimes the pain is just too much, and I regret the choice I made. I don't want to regret it.
ONLINE SUPPORT
Saturday, September 18, 2010
SSI Psych Eval
Wednesday was my psych evaluation for Social Security. It wasn't nearly as bad as I feared. There were two parts that took 1.5 hours together. First I was asked questions that were pretty much the same as one of the forms, with just more detail and follow-up questions—no big deal. The second were cognitive tests (verbal): i.q./critical thinking, recall, etc. I thought the second half was really fun actually 
I'm thinking that this has to be the last step in the determination process, so I'm nervously awaiting my letter. I really hope I don't have to through appeals—I need money to live on NOW, not three years from now, when I hopefully will be able to work again 
(Sorry about the emoticon surplus—I just figured out how to insert them)
I'm still having more trouble with depression, although it's not quite as bad as it was. I've been super tired lately—even with the Provigil. But I forgot the Provigil one day and it was definitely worse! I'm also starting to have problems with my knees—I've got to start doing the bike again to strengthen the muscles around the knee. I think it has to do with the muscles not stabilizing the joint well enough, so they kind of twist and overextend when I walk, which of course makes them sore. My theory
Of course, losing weight wouldn't hurt... But my philosophy at the moment is that life sucks enough—I'm NOT going to diet.
I went to the doctor again yesterday (I go every 2-4 weeks). I asked him for a referral to an ENT specialist. Back when I was still in speech therapy, I had trouble with nasality, because the soft palate was paralyzed (that's the VERY simplified version). My speech therapist said to give it a year, and, if it hadn't resolved, see an ENT. It's a lot better, but I still have trouble closing my nose from my mouth—trouble blowing my nose, liquid coming up my nose, choking when I lay on my back—my voice also goes really nasal, if I get emotional. My gp said the hard palate isn't working right either—I couldn't say "Ahh." I'm kind of excited to see a specialist because it would be so wonderful if he could help—the nasality thing has driven me nuts since I learned speaking. Apparently, it's also related to choking when I swallow—I would be so relieved if we could get rid of that!
I'm thinking that this has to be the last step in the determination process, so I'm nervously awaiting my letter. I really hope I don't have to through appeals—I need money to live on NOW, not three years from now, when I hopefully will be able to work again (Sorry about the emoticon surplus—I just figured out how to insert them)
I'm still having more trouble with depression, although it's not quite as bad as it was. I've been super tired lately—even with the Provigil. But I forgot the Provigil one day and it was definitely worse! I'm also starting to have problems with my knees—I've got to start doing the bike again to strengthen the muscles around the knee. I think it has to do with the muscles not stabilizing the joint well enough, so they kind of twist and overextend when I walk, which of course makes them sore. My theory
Of course, losing weight wouldn't hurt... But my philosophy at the moment is that life sucks enough—I'm NOT going to diet.I went to the doctor again yesterday (I go every 2-4 weeks). I asked him for a referral to an ENT specialist. Back when I was still in speech therapy, I had trouble with nasality, because the soft palate was paralyzed (that's the VERY simplified version). My speech therapist said to give it a year, and, if it hadn't resolved, see an ENT. It's a lot better, but I still have trouble closing my nose from my mouth—trouble blowing my nose, liquid coming up my nose, choking when I lay on my back—my voice also goes really nasal, if I get emotional. My gp said the hard palate isn't working right either—I couldn't say "Ahh." I'm kind of excited to see a specialist because it would be so wonderful if he could help—the nasality thing has driven me nuts since I learned speaking. Apparently, it's also related to choking when I swallow—I would be so relieved if we could get rid of that!
Wednesday, September 15, 2010
Mirror Therapy
My left arm and hand were the last to regain movement—my right arm and hand were light years ahead—my left wouldn't really do anything. For quite awhile I was pretty sure that it would end up being permanent paralysis—that left hand was WAY behind. What finally seemed to do the trick—maybe it was just coincidence, but I wouldn' discount it—was mirror therapy. My mom read about it in one of her million stroke books, and we figured it was worth a shot—it couldn't make anything worse! I did 1-2 15 minute sessions every day (missing a few here and there). I did this independently—I also had an hour of occupational therapy twice a week.
In about two weeks, my hand suddenly woke up. Odd choice of words, maybe—but that's exactly what it felt like. I had some minor progress along the way, but one day it was like my hand just remembered what it was supposed to do.
I just used a mirror about the size of a sheet of ledger paper that was held vertical by wooden "legs." There are mirror boxes available, but the therapy doesn't really require anything that fancy; although, they probably make it easier to block your view of the paralyzed hand. I would imagine that mirror therapy also works for legs.
There is no need for any special exercises—you just run through your usual dexterity exercises with both hands, but with only the good hand and it's reflection in sight. Somehow this tricks your brain into thinking that the movements you are telling it to do (even though you can't do them, it's important to try) are looking like those done by your good hand. At least that is how I understood it! Ironically enough, despite their lingering uselessness, my left arm and hand gained strength more quickly than the right arm and hand later.
Article about the effectiveness of mirror therapy
In about two weeks, my hand suddenly woke up. Odd choice of words, maybe—but that's exactly what it felt like. I had some minor progress along the way, but one day it was like my hand just remembered what it was supposed to do.
I just used a mirror about the size of a sheet of ledger paper that was held vertical by wooden "legs." There are mirror boxes available, but the therapy doesn't really require anything that fancy; although, they probably make it easier to block your view of the paralyzed hand. I would imagine that mirror therapy also works for legs.
There is no need for any special exercises—you just run through your usual dexterity exercises with both hands, but with only the good hand and it's reflection in sight. Somehow this tricks your brain into thinking that the movements you are telling it to do (even though you can't do them, it's important to try) are looking like those done by your good hand. At least that is how I understood it! Ironically enough, despite their lingering uselessness, my left arm and hand gained strength more quickly than the right arm and hand later.
Article about the effectiveness of mirror therapy
Tuesday, September 14, 2010
Overwhelmed
Some days it's all just too much to handle. I'm not this strong. Some days I wonder why did I survive? I avoid thinking about the past and I will not plan for the future. This moment is all I can handle, at that not so well at the moment. It drives people crazy that I have no future plans; in the early spring, I had no idea what I wanted to do in the summer. I don't know how to explain—I know EXACTLY what I what to do, but it's rife with impossibility. If I think about it and the limitations, I will completely fall apart. I am so frustrated; I can't even keep up with life. Maybe I would be better in some kind of assisted living. My parents help, so it's not really living alone, but they have to maintain their own lives as well. The thought of how dependent I rally am makes me want to throw up. I can only deal with it if I don't think about it, and some days the thoughts and memories cross my mind no matter how far I try to shove them back. I just so tired of trying to be strong. Of trying to wake up every day with a positive outlook. I love what I have in my life, but that doesn't lessen the awareness of and grief over what I lost. Is it worth it? I need to find out the process to write a living will. I never want to do this again. I'm glad I didn't have one then, but I'm terrified of not having one now.
I don't know what's up—I have these really depressed days every once in awhile, but this has been almost four days! I go for my psych eval for SSI/Disability on Friday—maybe the psychiatrist can help. Although, I think the focus is on being an evaluative session. Still, just talking about it will probably help.
I had dreams about doing stuff last night, too—that always leaves me feeling a little unbalanced. They're odd dreams, because the focus on something simple and short. Basically, they are me doing whatever it is that I'm having trouble doing in real life. For instance, last night I dreamed about mounting a horse. I guess it's subconscious visualization—in any case, it's kind of upsetting when I remember it in the morning, because it was so easy in the dream and it isn't in real life. Kind of like when I was bedridden and I would think I could just stand up.
I'm determined that today will be a better day.
I don't know what's up—I have these really depressed days every once in awhile, but this has been almost four days! I go for my psych eval for SSI/Disability on Friday—maybe the psychiatrist can help. Although, I think the focus is on being an evaluative session. Still, just talking about it will probably help.
I had dreams about doing stuff last night, too—that always leaves me feeling a little unbalanced. They're odd dreams, because the focus on something simple and short. Basically, they are me doing whatever it is that I'm having trouble doing in real life. For instance, last night I dreamed about mounting a horse. I guess it's subconscious visualization—in any case, it's kind of upsetting when I remember it in the morning, because it was so easy in the dream and it isn't in real life. Kind of like when I was bedridden and I would think I could just stand up.
I'm determined that today will be a better day.
Sunday, September 5, 2010
One of Those Days
It's one of those days. I usually manage to not think of the past, but once in awhile I just have one of those days where it comes crashing down around me and I'm swamped by awareness of then versus now. There are so many things I need to do, but I just want to go hide under my covers.
• • •
I ended up cooking (between naps) most of the day. Staying busy really is the way to go. When those moods hit, it is best to keep my mind occupied with simple processes. If I think too hard, that can be a bad thing, but not thinking at all is a definite disaster. Mundane tasks really are the ideal coping mechanism.
• • •
I ended up cooking (between naps) most of the day. Staying busy really is the way to go. When those moods hit, it is best to keep my mind occupied with simple processes. If I think too hard, that can be a bad thing, but not thinking at all is a definite disaster. Mundane tasks really are the ideal coping mechanism.
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