When I got my first Tysabri IV on 3rd June I didn’t naively believe that it would manage to stop my MS from progressing right away. I knew it would take some time for this medication to take effect and that I might even have relapses while I’m on it. I did not however expect a relapse just little over a week after I got the first IV of this new MS wonder drug! But exactly that happened and it’s so not fair and it sucks! Big time.
I had such a hard time making up my mind about if I want to try this new drug in the first place and I spend most of February and the beginning of March thinking and worrying about it and trying to cope with the fact that my MS is progressing much more than I believed it did. I spend most of February in a rather dark place and I was so happy when I finally got out of it and managed to put the whole MS issue in the back of my mind again, where it belongs, because I don’t want this issue to rule my life. And then… The MS strikes once more. I admit that right now I’m not just concerned about the current symptoms and but also insanely mad that I have an MS attack at all! After all the mental and emotional crap it already had put me through this year. I am so pissed off!
My first Tysabri IV (read this state of my health blog post from April for details) was originally scheduled for 13th May. I had to cancel it because I was sick and the MS nurse and I rescheduled it for today. I didn’t spend that much time thinking or worrying about it in advance, because I’ve did all of that back in February / March. I did – subconsciously ? – try to distract me yesterday though, when I started to fill my virtual bookshelves at Goodreads. I’ve managed to „transfer” approximately 15% of my books, which means the whole project will keep me busy for a while longer. I’ll also try to include the date, when I read it, which means digging into blog archives and the book reviews I kept on my site in 2002 – 2006. It’s fun to revisit this all and to remember reading these books. And yes, it’s very distracting from any worries that would have maybe crossed my mind otherwise.
Yes, I know the title is melodramatic, but I thought it goes along well with the title of my last post. I sometimes am a nerd that way :-) But I’m afraid to say, it also is pretty accurate, even though I’m doing more or less fine at the moment. It’s a weird situation, really.
If you’ve been following my blog for a while you might remember some posts I wrote about my health issues in January. If you don’t, here now is the updated, detailed and loooooong story. It really is a long post, so if you’re in a hurry you might want to bookmark it and keep it for later. And I should put in a disclaimer for anyone finding this post via a google search: I’m not a medical expert and I don’t want to be hold responsible for any (correct or false) medical information I’m posting here.
I’m still feeling pretty crappy. The acute MS symptoms are still bothering me, especially as they don’t lessen as much or as fast as I’d love them to. I’m suffering from worse “after effects” of the IV than ever before and am starting to be paranoid. Not literally paranoid, but still… ugh, I’d love to have a break. And to get a decent night of sleep. This has been so so exhausting.
Being forced to reevaluate my state of health and my own perception of it all and to make up my mind about the other treatment my doc suggested is exhausting as well. I don’t have to decide anything within the next few weeks, which is good, because I couldn’t. But just the fact that I have to think about this and can’t go on living in this weird mix of acceptance/denial in which I existed the last few years, is annoying like hell. I wasn’t living in denial, I accepted the diagnosis and what came with it and that the MS would trouble me every once in a while. I would have been fine with that kind of development. But to find out that this might all have been a false conclusion and that I’m not doing as fine as I think and feel I do, is rather frustrating. I guess I still haven’t quite wrapped my head around it…
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I still have a lot of fun doing the macro shots for this week’s project365 assignment.
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Another thing that’s really bugging me about this whole health issue: Worrying about it keeps my mind so ocuppied, that I can’t think about nicer stuff that I could also spend my time with. Planning the short trip to Berlin in February and such….
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The Sharks lost the hockey game in Berlin. Too bad. From what I’ve heard on the radio they played rather well, so … :-(
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Another night (and even a Friday!) where I’ll be going to bed before 11 pm. If I didn’t feel so crappy, I would call this pathetic.
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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I had planned to write a “Leftovers” post for days now. But it can’t be called leftovers when it’s not the end of the day yet, can it?
A few days ago I started to feel an MS attack creeping up on me. I tried to ignore it at first. Silly me, who still thinks that it will pass on its own. It so rarely does, I should have learned that after more than 10 years with this disease. Then I thought I’d wait till Monday to see my doc and start treatment, because I had plans for Sunday and getting IVs would mess with those plans. But then I did some more grown-up (=sensible *g*) thinking and decided to start with the IVs right away, because a) the symptoms (which got worse yesterday) would hopefully disappear sooner and b) I’d miss another whole week at work, if I started with the 5 IVs on Monday. I’m grateful for the German healthcare system and that my job situation is one, where I don’t have to fear losing my job for taking too many sick days. But I’d still feel bad to be off for another week in January after I’ve already out sick during the first. So now I’ll probably only miss Monday and Tuesday and be back at work on Wednesday. I got the first corticoid IV this morning and luckily don’t suffer from side effects too much yet. My tastebuds are still more or less working fine. I have to wait and see how it will be with the sleep tonight.
FYI: My syptoms this time… similar to the last attack in the summer of 2010. Numbness in my feet and legs and even all the way up to my hip and bum. When I’m sitting I always have the strange sensation of sitting on something on my right side. Like the hem of a jacket. A cushion that’s not quite right. Anything that’s not supposed to be there. And there isn’t anything there indeed, just my nerves and brain playing tricks on me. I’ve also got the tingling pins and needles feeing in both feet and lower legs. My feet feel like I have sand in my socks and shoes. When I walk the left foot also feels like I’m wearing very, very soft aircushioned sneaker. Soft, like it’s stuffed with cotton. Well, and of course the sand :-) It’s not too bad all in all, but it’s annoying.
IMHO the latest Grey’s episode sucked. I realized once again that I stopped to really care about it and that made me both sad and relieved. It’s a weird feeling. I’ll still write a review later, just because it would feel even more weird to not write it. I’ve written reviews since early season 3. It’s just what I do. I can’t help it.
Even after three additional days at home I’m feeling slightly off. Not as much as on the weekend or Monday, but still… Every once in a while my heart still beats like a jack-hammer, even though if I’m not exerting myself at all. When I’m merely sitting or lying somewhere. Every once in a while it feels like the blood is rushing to my head and I get dizzy. Maybe the weather is playing it’s part in all of that as well. I don’t know. The neurologist practice informed me that my bloodwork came back fine, only the lipase concentration is a bit high, but I should just come and have that checked out again in 2 weeks. According to Dr. Google a high concentration of lipase can cause all kinds of symptoms, but none of the ones I’m experiencing, so it’s probably really no big deal…
I’ll be spending the afternoon at my Mom’s, where I will first of all have to prepare my very own pasta salad, because Bro#3 recently complained that I’m not doing that as often as I used to for the whole family. Well, he didn’t really complain, but he mentioned it and then my mom sent him to get all the ingredients and now I have to step up :-) But as I enjoy eating it myself, it’s quite alright. The rest of the afternoon I’ll probably lounging on the sofa or outside on my Mom’s patio, listening to part 3 of the Outlander audiobook. I’ve almost reached the part, where the people of Cranesmuir drag her to the stake. Big revelations lay ahead and I’m looking forward to Jamie’s reaction, brought to me by the voice of the wonderful Davina Porter.