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.
I hate being sick. Not that I think that anyone usually enjoys being sick. And I’d even say that I have various degrees of dislike for various kinds of sickness. This kind at the moment. Somewhere at the bottom of my list. My self-diagnosis of “severe acute bronchitis” was confirmed by my GP (who I love, by the way, because she is really nice and considerate and takes her time to talk and more importantly to listen). She actually said it was a good thing that I came to see her right away and not try to cure it with household remedies or wait till it just goes away on it’s own like a ordinary cold would. Because it’s not just a cold, but a severe bronchitis.
I’m glad that I at least don’t have to cough so hard that it hurts my rips. The coughing itself sounds nasty enough, because the nasty stuff obviously is stuck deep down in my bronchi. Add a sore throat and the repeatedly clearing of said throat to the coughing (and yes, also add the screaming and cheering during the games I watched live at the World Championship last week *g*) and you’ll probably understand where my voice disappeared to :-) But I really think that the screaming wasn’t the cause of it all. It just didn’t really help to preven the bronchitis to get this bad though. My sinuses obviously aren’t equally inflammed at least, even though I feel this dull pressure all over my forehead and my cheeks. It’s not painful, but it sometimes feels like there is something trying to push my eyeballs out of their sockets. I’m using nasal lavage with a saline solution to relieve some of that pressure in my sinuses, but I’m not quite sure if that really works. It does help for a few minutes after I’ve done it, but after a few more minutes the dull pain is back at full force.
My GP signed me off sick for this week, which makes me feel slightly bad, because it’s the fourth week in 2011 that I’m off work because of various health issues and it’s only just early May. It’s not that there is an insane amount of work at the office that now won’t get done on time, because I’m missing, so I shouldn’t feel guilty. Especially not as I am in no condition to work right now. When I speak I sound like Joe Cocker and after more than 10 words my voice more or less turns into a ugly croaking. Plus the dull pressure in my head makes it almost impossible to concentrate on anything that requires serious thinking. But I still feel kind of guilty for being sick once again, which is stupid of me to think, because I didn’t choose to get sick. But I can’t help it… *sigh*
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.
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.
° ° °
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.
Starting from next week I’ll be posting the Project365 in one batch on every Sunday after all. And I definitely have to give some more thought about what to actually take a picture of. Be more creative and pay more attention to my surroundings.
But besides today’s Project365 photo I’ve got another photo which I wanted to share and forgot to do that yesterday. I picked up my xrays from the first doc I saw about my shoulder, because the orthopedic surgeon wanted to take a look at them. In the 21st century you don’t have xrays on film obviously, but in digital form, so I got a DVD with a black and white look of my insides ;-)