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!
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