Thursday, March 21st
I have not been feeling perky lately. (thus I am starting the week at Thursday.) I have been letting this place get me down. I called my sister and told her that I had been thinking of calling her last night when I was feeling very emotional. I wanted to vent to her about all the crap I was thinking about. Then I looked at the clock and saw that it was 10:30 p.m. I did not want to lay all this emotional baggage down at her feet and then say good night. I didn't think that was a good recipe for getting a sound night's sleep. Once I made that decision, the emotion started to go away. Not because anything was resolved, but from a lifetime of learning to suppress what I was feeling. Thanks, dysfunctional childhood!
Friday, March 22nd
They got me fed, dressed and up in my chair so I could be downstairs by the 9:30 a.m. pickup. Mom rode in the taxi with me to the doctors office. Then, I had a nice hour long introductory meeting with the neurologist. I talked about my entire experience with the MS, starting from the brain surgery to now. I told her about my website, which she will take a look at. She applauded me for my good attitude and then discussed two of my medications.
Oxybutynin had been prescribed by my urologist years ago, and I don't remember why. There had been a reason and I believe it had worked for that reason, but it was years later and I had a catheter now. The original problem is long gone, and this drug has apparently caused memory problems in other MS patients. I will try stopping it, and I do not foresee having to restart it.
Ocrevus is my MS-modifying therapy. She said the main reason it helps people is because it reduces inflammation. My MS is very advanced and no longer in the phase where there is inflammation. After the first application, I stopped noticing any difference it was making. I was supposed to have a dose on March 11th. Treatments for MS are difficult to evaluate as they try to prevent degeneration. How do you evaluate if something didn't happen? One way is to stop the treatment and see if you get worse. None of the official treatments improve your condition, they just prevent you from getting worse. So you can never make up that ground. (don't you just love that conundrum?) I feel comfortable waiting 3 months and going from there.
When I returned to the hospital, I was talking to the head nurse of my floor and I mentioned that it would be a good thing if I had business cards that I could leave with the neurologist's office so they could give them to other MS patients who would be interested in the site. She immediately said she could get them made up for me. That would be amazing! She is so helpful and supportive. On her own, she got me the sign on the back of my chair, which you see below. She rocks!
Saturday, March 23rd
My step brother and his wife stopped by with some shrimp pad thai from a nearby thai food restaurant. I love that treat! And they visit once or twice a month, so yippee! They hung out for a couple hours or so. My sister was going to stop by, but she will come tomorrow.
Sunday, March 24th
Mom stopped by after church. She goes to a church that is very close to the hospital, so it is really easy to pop in after she attends the service. It's always nice to see Mom, and she likes coming by and working on my hand a bit more. As she was starting, she said maybe I could give her some pointers. I thought she was being sarcastic, but then she clarified that, as she could see, I was confused. She said that she knows I understand the techniques well, and I worked with a very knowledgeable instructor on Maui. So I told her what to be aware of as she was working on me. I will clarify that I got things right, and I was a bit chagrined that I didn't take her seriously right away.
My sister called from Whole Foods to confirm what food I wanted, and then she showed up about half an hour later. Mom tagged out and went home, and us sisters got some alone time. I decided to eat some of the food she just brought for lunch. There are still three or four servings after this. She was a little bummed that there was a new person behind the counter, so the servings were not as generous as they have the last couple of weeks. If you get to be a regular and the staff know you, they can be very generous when they want to be. I highly recommend making friends with a Whole Foods employee. You can benefit greatly.
Add comment
Comments