March 5, 2015

Today started with a visit from the neurologist. He asked how I was feeling and what I was able to accomplish. He had obviously already read what the nurses wrote though, since he asked about my bowels (I had a not-so-fun time last night). He adjusted the medication again. I got to ask the questions that I had written down. One thing I’m pretty happy about is that my brain fog and confusion is likely because of the high dose steroids that I had been on too long. Also, he’s optomistic that myasthenia gravis will be easier to manage than Addison’s Disease, since you find your optimum dose and then stick with it. It doesn’t change for periods of illness, stress or increased physical activity. I’m pleased about that too because I was worried about how you knew which disease was causing what, and how to go about adjusting medications. The cat scan results aren’t in yet and I still need another EMG test, which he will personally do. I’m nervous about the cat scan reults, which are to detect abnormalities in the thymus gland, which opens the door to surgery. I’ve never had surgery and am fearful of it anyway, but extra fearful when you add in the Addison’s Disease. I guess there’s no sense in worrying too much yet though, if it comes to that there will be plenty of time to fret.

I skipped a shower today, but not because I didn’t have the energy. It was basically because my skin is getting so dry being in hospital for 3 weeks, and I was well enough that I could make that decision and not beat myself up about it. Plus, the nurse assured me my hair looked fine! My mom popped by for a quick visit before taking the day off. That’s a great sign because it means she believes I’m safe here as well. We’re all starting to relax a bit. She was here when the dr. was and I made him say that I had myasthenia gravis in front of her. I don’t really know why, but I still don’t 100% believe it. It might be my scientific nature in that I feel I need the backing of a blood test or the EMG. The expet believes it and the evidence shows it (respondin so well to the mestinon) but I still have a hard time committing to it. Even though, when I look back at my life I wonder how long I’ve actually had it. Possibly years, possibly since childhood. I’ve dealt with things far too long, and had no idea what a normal body felt like. When I start feeling the pills wear off I wonder why I put up with what I put up with, and have to remind myself that I just didn’t know any better.

Physio was pretty intense today. With the walker in the morning I walked 3 sets of 7m (22ft) each and in the afternoon I walked 4 sets of 7m (22ft) each. I had to stop because I was dizzy and out of breath, plus the physiotherapist made it clear he wasn’t letting me do anymore. I’ve said it a few times, but I really do have to learn not t push myself quite so hard. They also gave me some leg and core strengthening excersizes to do in bed, and I did them in the afternoon. Luckily, they’re all excercises I do in pilates so t was pretty easy to do them right, even though they were exhausting.

I also had 3 lovely visits today. The first was from my friend who’s like a sister to me and she brought her adorable one year old. He laughed and played on my bed and just generally made my day brighter. The next visit was from my boss and 2 coworkers. It was nice to laugh about how proud the physiotherapists were of me to walk that far vs. the physical demands of my job and what I was doing a month ago. Then to end the day my husband came over and we had a great time together.

My son couldn’t make it over today because he got a fever. It hurts my heart to know he’s sick and I can’t give him medicine and check his temperature and give him a kiss. I’m also afraid for his health. I know with auto-immune dseases just because I have it doesn’t mean he’ll get it, but they can run in families and they do in mine. Both my mom and sister have hypothyroidism, one cousin has MS and another has auto-immune hepatitus. Since they can be brought on or exasperted by a virus, it makes me afraid for my little boy. I would like to protect him from everything bad, and while I know that’s impossible, I still like to think that I can at least do something. Being here though makes me feel like I can do nothing at all. I can’t even suggest anything because it’s not fair to my mom and husband to try to parent from afar when they’re both perfectly capable of doing a great job.

I got a new roommate today. She’s the first one i’m nervous about sharing a room with. I’ve been fortunate to share rooms with incredible people that I reaally mde a connection with. My first roomie and I are going to dance at a pow-wow on April 11. My second roomie and I are now facebook friends. My 3rd roomie and I swapped stories about Saskatchewan, and he gave me his coffee every morning. I fixed my last roomie’s wi-fi this afternoon. This roomie, although she seems like a sweetie and, after about the 5th smile I gave her finally smiled back, is in here because she had a stroke (I am in the neurology unit after all). She’s confused and scared. This afternoon I had to keep calling the nurses in because she kept trying to get up and take her IV out. The nurses put restraints on her bed, but I don’t think they had to use them. These nurses are very caring and thoughtful and bribed her with warm blankets and dinner. When I got back from my outing with my husband, which was just the closed cafeteria and looking at the plants in the front lobby, they were washing her face and tucking her into bed. She’s sleeping soundly now, which is a good thing for both of us. Positive energy is so important to me right now and I was nervous I’d have to deal with her being upset.

Well I think that’s it for now. Now that I have a keyboard I hope to write a bit more. It may be all over the place and not nevessarily chronological. I think I’ll just let it happen organically and see where we end up.

Right now I feel calm.


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