From the Lab Rat's Desk - March 18, 2008
Wednesday, 19. March 2008, 05:26:34
For the last little while I haven't done much writing, emails or anything else. I am going through my bi-annual health decline. I am trying to do what I think might save me from declining in any permanent sense, so I am resting, drinking lots and resting some more. This year my eyesight and coordination are particularly affected, hence why I have rarely written anything more than a few words here and there. It has led to my discovery of Facebook where I can keep in touch in a very light sense with people on-line and while doing so I have found a few old friends and relatives and reconnecting (even ever so lightly) has been a thrill for me, and without this health decline I never would have done so. Something good comes out of something bad. I also discovered the fun of owning a virtual pet, my Fluff Penguin, and while posting a video to my Youtube (www.youtube.com/alettemes) site discovered that there is a Penguin named Aletta in the Zoo at Akron Ohio, so now my Fluff penguin has a lady in his life called Letty.
For anyone like me, when typing is immensely laborious, this kind of Facebook activity is only a matter of mouse clicks, and when I am very housebound it keeps me connected to what is after all a civilization to which I have a membership. On the best days I try to do some reading and researching into what ails me. I have been reading, thanks to a post on PSP Communications on Yahoogroups about Lithium and how it very well might be helpful in preserving brain cells - both their life and functioning - in persons with neurodegenerative illnesses. I have read enough at this point that on my next appointment I will ask my doctor for a trail run to see if I can still make some gains. I am feeling very hopeful; about it. I'd appreciate hearing from anyone who has tried lithium for off label (non bi-polar) uses. It looks so promising that I want to do this despite a previous experience with the stuff which had me on dialysis after my kidneys shut down due to toxic levels of the stuff.
Since I have had no energies at all for exercising I have instead made special effort in the areas of posture both sitting and walking/moving and I think that also is paying off, my headaches are less several at 6 pm than usual (now it hits me at 8). I've also kept up the dietary changes, the toasted flax seed and licorice, by no means am I regular but I have passed several obstructions and with much less bleeding than one would have expected, I am still far from caught up but I do think I am less toxic than before and will keep it up until I am. Bottom line is that I am fighting and fighting hard because I want my life back and I really think (probably denial but it works for me) that I can find a way if I just stay healthy as possible and keep hunting down an answer because it probably exists already I just haven't found it yet. The lithium might not be it, or it might be or it might be part of it, I don't know, but I do know I have to keep trying.
I do try to keep up reading the posts on my groups but on my worst days, to be honest I don't because it saddens me so to hear of how others are suffering that it makes me more ill and I start to lose sight of the possibilities which I do need to hand on to. For those of you who think you are doomed, you may not be, we ( and doctors) just don't know, fight, stay positive and keep looking for answers, and if I find one I will shout it out to everybody. Remember too that several people (in the case of MSA in particular) have already lived more than 40 years with the condition, and that means you can live to a normal life span, which in Canada is 80.4 years, though you will live it with a lot of nasty and nuisance symptoms which few will understand. Of course it doesn't mean that if you were diagnosed at age 70 you will live to 110 - thought try anyway. It does mean for the early onset crowd, that lots of little remedies and a good attitude, and a smattering of good fortune can keep us going. It wasn't all that long ago that AIDS was an absolute death sentence and now it is a chronic disease not a universally fatal one.
This is where life has taken me lately, I know I need to stay positive and when I go into my bi-annual period of decline and everything hurts more and functions less staying positive is very, very hard. When a few weeks ago a few lives were lost on some of my support groups and I just had to retreat awhile and look after myself, and deal with nuisances like my landlord which sucks the life out of me well enough.
Easter usually signals the beginning of me feeling better, probably the warmer weather and the generally more optimistic tone of life. I am thinking again of my balcony garden and I've taken lots of happy photos of family and tulips in the last week. I've even completed a photo edit of which I am particularly proud of the unknown soldier monument in downtown Vancouver. I've always loved that sculpture and I have tried to do the subject justice. It matters so much to keep busy, to have passions. If you can't paint, click the shutter instead or learn to use the mouse to create wonderful images with.
It has been a while since I last posted and I very much wanted to make the effort before Easter which I hope will be truly wonderful for everyone. If all goes as I intend I should be back to my usual form fairly soon.
All the best
aletta
For anyone like me, when typing is immensely laborious, this kind of Facebook activity is only a matter of mouse clicks, and when I am very housebound it keeps me connected to what is after all a civilization to which I have a membership. On the best days I try to do some reading and researching into what ails me. I have been reading, thanks to a post on PSP Communications on Yahoogroups about Lithium and how it very well might be helpful in preserving brain cells - both their life and functioning - in persons with neurodegenerative illnesses. I have read enough at this point that on my next appointment I will ask my doctor for a trail run to see if I can still make some gains. I am feeling very hopeful; about it. I'd appreciate hearing from anyone who has tried lithium for off label (non bi-polar) uses. It looks so promising that I want to do this despite a previous experience with the stuff which had me on dialysis after my kidneys shut down due to toxic levels of the stuff.
Since I have had no energies at all for exercising I have instead made special effort in the areas of posture both sitting and walking/moving and I think that also is paying off, my headaches are less several at 6 pm than usual (now it hits me at 8). I've also kept up the dietary changes, the toasted flax seed and licorice, by no means am I regular but I have passed several obstructions and with much less bleeding than one would have expected, I am still far from caught up but I do think I am less toxic than before and will keep it up until I am. Bottom line is that I am fighting and fighting hard because I want my life back and I really think (probably denial but it works for me) that I can find a way if I just stay healthy as possible and keep hunting down an answer because it probably exists already I just haven't found it yet. The lithium might not be it, or it might be or it might be part of it, I don't know, but I do know I have to keep trying.
I do try to keep up reading the posts on my groups but on my worst days, to be honest I don't because it saddens me so to hear of how others are suffering that it makes me more ill and I start to lose sight of the possibilities which I do need to hand on to. For those of you who think you are doomed, you may not be, we ( and doctors) just don't know, fight, stay positive and keep looking for answers, and if I find one I will shout it out to everybody. Remember too that several people (in the case of MSA in particular) have already lived more than 40 years with the condition, and that means you can live to a normal life span, which in Canada is 80.4 years, though you will live it with a lot of nasty and nuisance symptoms which few will understand. Of course it doesn't mean that if you were diagnosed at age 70 you will live to 110 - thought try anyway. It does mean for the early onset crowd, that lots of little remedies and a good attitude, and a smattering of good fortune can keep us going. It wasn't all that long ago that AIDS was an absolute death sentence and now it is a chronic disease not a universally fatal one.
This is where life has taken me lately, I know I need to stay positive and when I go into my bi-annual period of decline and everything hurts more and functions less staying positive is very, very hard. When a few weeks ago a few lives were lost on some of my support groups and I just had to retreat awhile and look after myself, and deal with nuisances like my landlord which sucks the life out of me well enough.
Easter usually signals the beginning of me feeling better, probably the warmer weather and the generally more optimistic tone of life. I am thinking again of my balcony garden and I've taken lots of happy photos of family and tulips in the last week. I've even completed a photo edit of which I am particularly proud of the unknown soldier monument in downtown Vancouver. I've always loved that sculpture and I have tried to do the subject justice. It matters so much to keep busy, to have passions. If you can't paint, click the shutter instead or learn to use the mouse to create wonderful images with.
It has been a while since I last posted and I very much wanted to make the effort before Easter which I hope will be truly wonderful for everyone. If all goes as I intend I should be back to my usual form fairly soon.
All the best
aletta
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