March 8, 2015

I have bruises and needle marks all over my body. Everyday for 24 days I’ve had an injection in my stomach of blood thinners, I’ve had numerous blood tests, sometimes twice a day, and I’ve had numerous IV’s and IV attempts. Luckily, I’m finally moving around enough that we don’t have to worry about blood clots so I can stop the blood thinners. Just in time too: my stomach looks like a connect the dots picture.

My husband is looking tired and my mom is looking thinner. This has been a lot of stress and hardship on them, and they still have to take care of life, work, and a toddler. When I’m tired I get to take a nap, but they have to keep going. It’s also entirely different worrying about someone you love than worrying about yourself. I’m privy to so much more information about how I’m doing and how I’m feeling than they are. I did find something I could do to help them out though. I ordered a couple healthy frozen meals online and I’m getting them delivered to the hospital. Hopefully that lightens the load a little bit for them and gives them a bit of some down time.

My husband and son came to visit in the morning and I had enough energy to really play with him, albeit while laying down in bed. We’ve been playing like that for months though. I am possibly the best train voice while hiding under blankets that there ever was! My mom showed up too and we all went down to the cafeteria for lunch. My son had a huge tantrum though because I wanted to walk with the walker for a bit first. It’s amazing how much a kid can scream while his mother hobbles on down the hallway for 20m. I was proud of him when he finally said three times very loudly “HUG HUG HUG.” I got him to sit on my lap and I gave him a hug. Then he talked about why he was so upset, which I had already figured out. He didn’t like that we were doing something different. He expected his trains to go on the wheelchair, mommy to sit on the wheelchair and him to sit on my lap. We didn’t really take the time to explain to him what was different about this outing. Once he had calmed down and we had talked about it we wheeled back in and he apologized to the nurses for not following the hospital rules. Of course we can’t let him get away with that type of behaviour, but I really do feel for the kid. He’s only 3 and his world has been turned upside down. I don’t blame him for being upset with change, even a small change. We’ll have to make more of a concentrated effort to tell him when things are changing, even little things. It’ll be nicer for all of us if we can avoid the tantrum and consequences altogether. Dealing with that really robbed me of some precious energy and I pretty much fell asleep during lunch. When we got back to the room I went to bed and slept for 3 hours, hardly opening my eyes when the nurses hooked up my IVMG treatment and vitals monitoring.

Tomorrow will be a busy day. I should see the neurologist, a cardio-something-or-other about the CAT scan of my thymus, the physiotherapist and occupational therapist, and I also will be reassessed by the doctor from the rehabilitation hospital. I’m tired just thinking of all of that activity.

I still haven’t announced my diagnosis of Myasthenia Gravis online.


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