If I may, what are you dying of? I tend to be a bit too direct sometimes, sorry. When did you get your dx as terminal? I was a baby, so I really don't remember ever thinking I'd be 18, much less 28. I always promise myself that I won't get close to another person I might lose. but even people with things you might die from, or could die from don't understand WILL die from. My disease has a fatality rate of 100% I start feeling very isolated when I cut myself off from my hospice message board, etcetera. Nobody else understands. BTW, are you in hospice? It helps, truly. I'm a right little bundle of sunshine today. I'm going to see if I can figure out how to make LJ work. Back later. Thanks for setting this up. Em
I have a rare form of asthma called type one brittle asthma - you can read the details about it here. I've had the condition since I was seven and am therefore in year seventeen I think - most don't make it past year ten so I already know I'm on "borrowed" time. My consultant is pretty good and has been up front and honest with me since I was about 18 - I'm 24 now so
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I'm em_30 on LJ now, thanks to Ricky. I'll add you as soon as I figure out how. I might even put something on my page! I would very much like to be addded to your journal friends, if you don't mind. There are many things I want to talk to you about. Right now, the CNA is here to do P.M. care, so I'm off, but I'll write at you later. hang in Em
Bet I can guess-- Cor Pulmonale? I'm cardiomyopathy, MD eats muscle and the heart is, alas, one. I'm FUBAR, so no chance of transplant (I'm kind of destroyed everywhere) but is a transplant a possibility for you? Some of my cystic fibrosis buds have had only the lungs replaced, and it did enough good to get their hearts back to baseline. Spent the day hazy from post-focal seizure headache. My psychologist from Hospice came by and we chatted a bit. OT has decided that having my speaking valve in for 6-8 hours a few days a week isn't good enough, so she is going to trial me with communication devices. The Liberator is nice and portable, but we have to see if it will work with eyegaze, Kurzweil and Macintosh. Kind of nice to make plans for some future, because it makes me feel a bit less panicky about the situation now. I'm focusing on getting home again, and trying not to get worked up about any further than that. Going on ten weeks, this admission. Tired, going to nap. Em
I have added you to my flist - just thought you'd like to know...
A transplant is not an option here, I've heard of it being done in Australia and the US before but it has never been approached between me and my doctors. There are not enough organs around as it is and I doubt that even if I could have the transplant that I would live long enough to see it happen.
I look forward to seeing your comments on my regular journal...
It makes all the difference, doesn't it. Reasons to live, big or small. Wish you were doing better. Wish Joey was doing better. Wish I was doing better. But wish in one hand and spit in the other, and see which one fills up first. OT looking into your suggestion, thanks, dear. I am a hardcore Mac girl. Love from Em
Sorry I forget to describe that I add you as a friend before I´ve had reading, that you want ask before that. Sorry. Sorry, Should I delete you? Okay, stupid question. I do it. And I apologize and I disapper from your site.
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I always promise myself that I won't get close to another person I might lose. but even people with things you might die from, or could die from don't understand WILL die from. My disease has a fatality rate of 100% I start feeling very isolated when I cut myself off from my hospice message board, etcetera. Nobody else understands. BTW, are you in hospice? It helps, truly.
I'm a right little bundle of sunshine today.
I'm going to see if I can figure out how to make LJ work.
Back later. Thanks for setting this up.
Em
Reply
Reply
I would very much like to be addded to your journal friends, if you don't mind. There are many things I want to talk to you about.
Right now, the CNA is here to do P.M. care, so I'm off, but I'll write at you later.
hang in
Em
Reply
I'm FUBAR, so no chance of transplant (I'm kind of destroyed everywhere) but is a transplant a possibility for you? Some of my cystic fibrosis buds have had only the lungs replaced, and it did enough good to get their hearts back to baseline.
Spent the day hazy from post-focal seizure headache. My psychologist from Hospice came by and we chatted a bit. OT has decided that having my speaking valve in for 6-8 hours a few days a week isn't good enough, so she is going to trial me with communication devices. The Liberator is nice and portable, but we have to see if it will work with eyegaze, Kurzweil and Macintosh. Kind of nice to make plans for some future, because it makes me feel a bit less panicky about the situation now. I'm focusing on getting home again, and trying not to get worked up about any further than that. Going on ten weeks, this admission.
Tired, going to nap.
Em
Reply
A transplant is not an option here, I've heard of it being done in Australia and the US before but it has never been approached between me and my doctors. There are not enough organs around as it is and I doubt that even if I could have the transplant that I would live long enough to see it happen.
I look forward to seeing your comments on my regular journal...
Reply
Glad that you have something to look forward to - that can do wonders for the psyche :)
r
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Wish you were doing better. Wish Joey was doing better. Wish I was doing better. But wish in one hand and spit in the other, and see which one fills up first.
OT looking into your suggestion, thanks, dear. I am a hardcore Mac girl.
Love from Em
Reply
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