March 8, 2015

It’s hard to get used to having to choose between all the little things you do in a day that you take for granted. This morning I walked to the shower (behind the wheelchair) and stood for much of it, but because of that it took me longer to recover. I ate breakfast and put moisturizer on my legs and arms too. But I haven’t mustered up the energy to go make myself a coffee, do my in-bed physio, or brush my teeth. Each little activity of sorts costs energy, and it’s hard to determine how much energy it will take. It’s like trying to grocery shop with a shopping list that keeps changing, with a budget you don’t know, and prices that are subjective to outside influence. It should get easier with time though.

It’s a beautiful sunny day outside. The nurse said next week it’s supposed to go up to 18C. Run-off should be starting soon. It’s disappointing to know I’m going to miss it, but I’m still too weak and tired to really care. I pulled up two of my stations online the other day and saw that I’ve missed out on 4 days of data. Then I decided I didn’t care. Work is not where my energy is going, even if I do love my job. The Dr. seems to think I’ll be fine going back to work once the medications get figured out. He even says it’s more manageable than Addison’s disease. I really want to believe him, but the personal accounts I read online don’t really back that up. It seems like some people live a relatively normal life and some people consider themselves disabled. I will always push myself and I will be as good as I possibly can be, but I can’t help but worry about how good that actually will be. This is what I need to be able to do again: https://www.ec.gc.ca/rhc-wsc/default.asp?lang=en&n=9D04D344-1 .

More love and wonderful gestures have been pouring in. Yesterday I had a few visits from friends. At one point I was just so content laying half asleep in my bed. My friends were talking with my husband while my son played trains on my legs. My husband and I don’t “entertain” much per say, but we casually have people over all the time. My house is very relaxed: we offer up the first drink and then you’re encouraged to just get the next one on your own. Most Sunday nights our closest couple friends come over for a communal supper. People know to drop by if they’re in the neighbourhood, and it’s fine if they only stay for half an hour or if they end up staying all afternoon. So yesterday, just having friends around me talking about normal things was really great.

I keep thinking I should announce my diagnosis online since so many people care and will want to know, but still can’t quite do it without more confirmation. Part of me still just can’t believe it, which is such an opposite feeling from when I was diagnosed with Addison’s Disease. I accepted that right away, but I guess with that I had the blood results. Maybe it’s the fear of telling work. I’m afraid I’ll have to be re-assessed by the work doctor to confirm that I can do my job still, and I guess I’m not positive I will be. I have to give myself time though. Whenever I start to think or fear something that’s too far ahead down the line, I have to take a step back and stop. I’m not being fair to myself if I start to worry about that before I’m even out of the hospital! I have to be more gentle with myself.

I do need to stop eating so much dessert though! Since I’ve started eating again I think I’ve eaten mainly crap and sugar. It’s not really fair of hospitals to have mainly crappy meals but great cake. Maybe they’re trying to make up for the rock hard mashed potatoes and mushy carrots, but really? Do I have to add a couple pounds of cake to this body right now?

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March 7, 2015

Do my eyes droop? Yes and no. Lately I haven’t like many pictures of myself because I didn’t think I looked very alive. Every now and again when I had my concrete leg days I’d take a picture of myself in bed. Usually I’d delete it because I looked so bad, but the common theme was more my jaw looked hard. My face looked expressionless even when I tried to smile. My right eye droops a bit, but I think it’s hidden well beneath my glasses. Of course me being who I am, I blamed my sudden fuzzy or double vision on needing new glasses, and resolved to go to the optometrist one day with my son, who has never been to the eye doctor. But of course I was also too tired to actually get to the doctor. I’m not sure why I refuse to use the word fatigue instead of just tired. What I experience is not just tired. Tired doesn’t mean you lay down after your morning shower. Tired doesn’t mean you do dishes in 3 goes while sitting on a kitchen chair. Tired doesn’t mean laying down underneath your desk and hoping no coworkers see you. Tired doesn’t mean going to bed at 8 and sleep until 9 on a Saturday. This is fatigue, which is a symptom of a medical problem. I’m not sure if I didn’t want to believe I had another problem or if I just couldn’t believe it, but not accepting that I was fatigued is a sign.

My Mom implored me to try to work through a fear I told her last night. It’s a big one and she’s right in saying I have to address it and cast it aside. It will harm me if I continue, so here goes. I’m afraid it’s my fault I developed myasthenia gravis. If it was caused or exacerbated by a virus, if I had just gone to my family doctor sooner could I have avoided getting it? If I had taken care of myself more and not gotten the virus in the first place could I have avoided it altogether? I feel guilty for getting it. Sometimes I feel like my bad choices and bad decisions with my health and pushing through is what got me into this mess. I don’t want to hate my body because, even though it attacks and kills itself, it has also done some pretty wonderful things.

My victory for yesterday was making my own coffee. I had my husband bring me the coffee filter we use for camping that fits into a mug and you just pour boiling water over it. There’s a kitchenette in this ward and I can wheel myself over to it. It feels great to be able to do that for myself again. Because of my love (read: utter dependence) on coffee, it was one more thing I had to rely on other people for. I’m slowly gaining my independence back. It’s so strange to go from being a mother and part of the workforce, with a very physical job at that, to suddenly relying on others for everything. I avoided peeing because I needed help. I had to be lowered into a bathtub on a machine to get clean – and even that was better than when I could only handle a sponge bath. My husband and mother had to put my socks on for me. It took me an hour and a nap to get dressed. When I think of it that way I can understand why the physiotherapists are happy when I walk 7m with the walker, but it’s still hard to not compare myself to what I was before February 12, 2015. I do believe I’ll get back there, but it’s harder and harder to believe it’ll be as soon or as easy as I would like. I’ve been too afraid to ask for timelines. I think on some level I know what they are, but I just don’t want to hear it. It’s somewhat like the diagnosis. The neurologist knows it’s myasthenia gravis without the results from the tests, but I still have a hard time committing to it without some more confirmation.

I miss my son so much. He’s getting older and bigger. I’ve started talking to him on the phone more since visiting, while wonderful, really screws up his daily routine. He really thrives with routine and is a much happier and well behaved toddler when he gets to bed on time. Yesterday he was sick with a fever and diahrea so he couldn’t visit. I so wanted to just drag myself out of this bed and run home to take care of him. I wanted to be the one to hold him and give him Tylenol and a completely unnecessary bandaid on an imaginary boo-boo. I wanted to take his temperature and make him soup and get him to drink water. He’s my baby boy and no one takes care of you like your mother. Thankfully, I know he still got wonderful care, since my own mother was the one looking after him. I was sick a lot as a child (notice a theme?) so I know first hand how good mom is at taking care of a sicky.

Yesterday I started my first round of immunoglobin therapy, which is basically an infusion of healthy anti-bodies from healthy blood donors. I’ll try to write more about that later. I’m starting to tire and I need to save some energy to eat. Oddly enough, eating and digesting takes about as much energy as my physio does.

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.