welcome to boring city 09/16/2009
 Hello peoples I am Dana, friend of Jackie, and collaborator on this blog. I have truly flaked out on writing, and I'm sure I could list off a bunch of excuses, but i'll go ahead and spare anyone who is actually reading this. In order to get myself back in the groove of contributing here, I am just going to sort of update/ramble. Here goes nothing... So I spent an interesting summer house hunting, and my boyfriend and I are now finally in our new home. I can definitely say the energy that it took to find/buy/move into/begin minor renovations has truly been...grueling. On the same note it's been totally rewarding and all that cliche-buying your first home-bullshit. I have a really awesome neighbor who is nearing eighty, living alone, and certified schizophrenic. She has decided that I am her new best friend, so I've taken to sticking post it notes on my front door which read "do not disturb" when I truly cannot deal with crazy babble coming from an elderly lady in her granny panties (no, i'm totally serious). Sometimes this actually works, although posting notes on my door makes me feel a little crazy as well. Even though crazy old neighbor lady is totally endearing sometimes, I remain slightly leery given her fragile mental state. Speaking of fragile mental states, I could probably touch on my own, but I'll save that for another post. So I have also just begun school again, as was the plan pre-diagnosis. While I won't say that MS has totally overhauled my plans, I have made a change in my major as well as decided to completely finish my degree online. Both my doctor and my neuropsychologist had suggested that I take school quite slow, and against my better (yes, better) judgement, I am only taking eight credits this term. I have already found myself wishing for a bit more to do, so needless to say, lesson learned. At the same time, there is that little issue of not quite knowing what one day to the next will bring, and tomorrow I might be thanking my lucky stars for so few classes. The unexpected twists and turns in how I am feeling has been by far the most irritating part of this disease for me. I am still working a humble three days a week at the coffee shop, which is the least I have worked in my seven (yes, seven) years there. When I space out on whether I have charged someone, or work to get some flipping straws through lid (who even drinks coffee with straws?) I just make a big fat joke about how I'm getting too old for this job or I've had too much caffeine. Laughter is the best medicine, although some people have shit for a sense of humor. To those people, I smile and make a secret wish that they spill coffee on their crotch. This last Monday was my 30th shot of Avonex, which I suppose is just over seven months. During the majority of my time on this drug, I have found myself pleasantly surprised at how little I dealt with any side effects. Over about the last month however, I have begun to feel what I have assumed are side effects. I remember when I had the nurse to my house for the very first injection, she told me that some patients didn't have any issue with the drug until they had been on it for awhile. Even though I added two more injection sites to my repertoire I am having some pain issues with the tops of my legs. I have started to feel like my muscles are basically just saying "fuck you" every time I stick it to them. I don't really blame them. I have also had some issues with severe fatigue, muscle and joint pain, and an overall craptastic feeling within a few days of taking the shot. It seems a bit random that my side effects seem to take a full 24 hours to kick in, and then tend to stick around a few days. Definitely something to take up with the doctor at the next visit. Speaking of doctor visits, I had appointment number two with the specialist a little over a month ago, and I still think he's totally rad. While I did sit in the waiting room for what seemed like forever, as is typical of all doctor offices, once I was in for the appointment it was great. It's a wonderful feeling to not be rushed through a list of questions, given the once over, and sent on your way. Dr. Cohan is amazing about just making you feel comfortable, allowing time for you to ask whatever you want, and just being totally thorough. He's made it super clear that as soon as any symptoms change, become more severe, or last longer than they previously have, to call him immediately. Just having a doctor actually assert that is a big deal for me, as they generally act like they could give two toots. The only part of the appointment that left me a little unclear, was in regards to his suggestions for really staying on top of my symptoms because of some of my particular lesions, specifically those on the spine. Leave it to me to not clearly listen and immediately blow the whole two sentences he actually said way out of proportion. For some reason the way he said it made me feel a little abnormal and I asked him how many patients have these type of lesions. He said roughly 25% of patients have them, and I immediately had to correlate this with the 25% that end up needing a set of wheels. I started creating this whole theory in my mind before I had left the office, and have since then worked on letting it go. I don't believe there are any studies out there which link any particular type of lesion with all those who end up in wheelchairs. Or are there? Haaaha. Anyway, I think I would be more out of the ordinary if I didn't allow myself these moments of "what if" in the first year of my diagnosis. Alright, I think that was an update... CommentsVal Sat, 19 Sep 2009 23:46:00 yay an update from Dana. honestly, I've followed this blog for awhile now... totally confused about who was actually posting. one day I would totally relate to a Jackie post.. then think it was Dana.. or the other way around. congrats on your first home! we're all totally grown ups :) Jackie Sun, 20 Sep 2009 00:39:58 Hey Val, Wed, 28 Oct 2009 19:01:05 Dana, Leave a Reply |
