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!

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