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.
My friend Heidi
complained (*g*) wondered why I hadn’t posted something about my trip to Berlin yet. Honestly? Because my mind was too occupied with work stuff and health stuff and because I was lazy. I only yesterday transfered the photos from my camera to the hard drive of my computer. I’m not sure if I will ever post some photos, because by now I’ve learned to not say “I’ll write about that/post this later this week/month”, because I’ll never do that after all. I really did enjoy my short stay in Berlin, I saw lots of the “important sites/buildings” and I think it would be boring to list all of them here. The Jewish Museum is worth mentioning though, because it’s great museum, an incredible building and taught me (or made me recall) a lot about Jewish history and culture. I thought I’d also link to a few of the shops I spend so much money in (the shop at the Jewish museum was one of them) but I can’t find the receipts at the moment, so I have to wait for my creditcard bill to find out the shop’s name again :-)
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My hockey team had an amazing 6:4 win last night! Yay! The game itself wasn’t all that amazing all the time, but who cares? They won and it was such an important win if they still want to keep up the last bit of hope of getting into the playoffs. So YAY for the Cologne Sharks!
If I never get around to posting a real one-topic-post anymore, at least I should find time for this kind of post. I’ve actually planned to post this last night. The post was almost completely written, but then I was just too tired to finish it. Today I’ve been busy with various things and most of all with following the Daytona 24 hours on various live streams. The things I do as a Paddy fangirl :-) The Dempsey Racing team is doing great and might end up on the podium [I hope to have this post up before the race ends, because, like I said, it was supposed to be up about 24 hours ago ;-.) ]
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I’ve been pretty busy all week and still not doing really ok (health-wise), so I didn’t feel like collecting my thoughts and writing them down. I’m still suffering from current MS symptoms,. It might be a new MS attack, even though it’s actually only considered a new one if it occurs 4 weeks after the old attack. Which these symptoms didn’t, it was just a few days. I decided to not see my doc about it for several reasons. I didn’t want to get another round of IVs, especially since they didn’t help much during the first/old attack. The symptoms will go away with or without IVs, the IVs just might help to speed up the process. So I have to be patient, which is hard sometimes. But I think it got better, i.e. the symptoms lessened a bit over the last few days. I also didn’t went to see my doc, because I’m not ready yet to talk and decide about the new treatment he suggested. I’m not as confused and in emotional turmoil as I have been, but I still need to gather some more information and to collect all the questions I have and all that. I actually had planned to do that this week and this weekend, but I had too many other things on my mind. And am actually grateful that the MS isn’t all I can think about, like it had been last week, after I learned that I’m actually doing worse than I thought. So I still have to think about some stuff, but I don’t do it all the time, which is nice. And I really don’t want to step into the neurological practice before my appointment in March. I guess I’ll see more than enough of it in the week/months after that…
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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