Health update: The acute MS symptoms have still only lessened a bit. I know the corticoisteorid IVs don’t always help magically over night but it still sucks. So do the side effects of the IVs, even though I’ve already had those worse during previous IV cycles. But the more importand news: The results from yesterdays MRI results are not good. It seems that even though I have had relatively light attacks (compared to other patients), since I’m taking some prophylactic meds, the MS is still very much actively screwing my brain and causing havoc. Which I don’t notice as attacks, but it’s still happening. Which sucks on so many levels that I still don’t know how to process it. My doc suggest a new treatment, which would be more aggressive and as it’s all about interfering with my immune system (to stop the autoimmune disease MS) this treatment is not without risks.
It’s just so much to take in at the moment and I feel like I’ve been thrown back to 2000, when I got the diagnosis MS and I had to process that and what it would mean for me and my life. When I spent so much time reading about it, searching the web for information, reading and writing on MS patient message boards, being a small part of the MS online community. I stopped doing that after a few years because I felt good, I thought I handled it rather well, I was optimistic, that it wouldn’t get that much worse and I just wanted to stop worrying about all that crap. I didn’t wanted to get dragged down and worry all the time and to read about patients who are doing so much worse and to always think that could be me next time.
Maybe I should have worried a bit more and paid a bit more attention to any – even the smallest changes – in my body?. Does the hand feel numb? Is there a tiny tingling in your feet? Does it pass or not? It’s so easy to get used to it, if it’s just tiny tiny changes, which you just don’t notice anymore after a while. Paying much closer attention to all these tiny changes would be a neccessary requirement with this new treatment and that’s scaring the crap out of me right now.
I guess there might be a special medical post some time later. Or maybe not if I deem it all too private to write about.
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To avoid worrying too much about this MS development, I at least managed to compile dozens of “To-Do-Lists” , neatly sorted to various aspects of my work and private life. I really need to be better organized and that’s hopefully a good start. I’m using Evernote for this because I can sync these lists from my phone, my office computer and of course at home and maybe this helps to get things done. I just need to remember to actually always write the things done in one of the three places :-)
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I read “Wohin du auch gehst” yesterday, the true story of a German backpacker who was traveling Southeast Asia and fell in love with a young prostitute, who turned out to be HIV positive. I knew in advance that the story had an happy end, because there even was a movie made about this story last year called “Same Same, But Different”. I really liked the book, it was a wonderful love story, sad, but entertaining and brutally honest as well. I bought the DVD yesterday too, because I really wanted to see this on screen. It felt like a good idea yesterday and I’m sure I will watch it some day. But I’ve had enough of autoimmune disesase and screwed up immune systems and how to do deal with all of this for today :-(
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This week’s project365 theme is “macro” and I didn’t expect it, but I’m having a lot of fun coming up with ideas and actually shooting the photos. My ordinary point and shot camera doesn’t allow to play around a lot with this kind of assignment, but it does have a macro setting, so that’s at least something…
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Still haven’t decided if I should go to bed early or watch the latest Hawaii 5-0. Of course I could have done both, had I not started writing this blog post…
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Some time ago I promised a photo of my kitchen wall with the enlarged (30 x 40 cm) photos from my vacation in the last few years . It was not easy to get a somewhat decent shot, that includes all four and not too much reflection from the lamp or the window. But it’s just meant to give you an idea, so… here it is. The larger frame on the table will be put up on another wall, once I’ve replaced that glass that broke during the move from the old flat. This photo collage actually is from the pre – digital camera – period and, so it’s prints from analog cameras, glued on a large piece of paper. Yes, it was done like that back then… in 1995.
Illnesses are so scary, even now with so many pieces of information at our fingertips, we still don’t know everything we need to. So rarely is there a “right” choice, but rather the best choice we can make with the information we have in the moment. Whatever you choose will be a good choice, and I hope it has you feeling better.