Good morning world. Happy Monday. It’s a dreary one here in NY, raining. That’s ok I was home today anyway. I am about to doing of my exercise programs and I’m still deciding which one to do. I might let my aid pick since I force her to exercise with me when I exercise in the house. Sometimes I purposely don’t go swimming because I want her to exercise. However I have to admit something about swimming, it’s been getting…
My neurology visit was uneventful yesterday for the most part. He did a quick exam and during the exam he said I always forget how myelopathic your MS has always been. He always says that to me. First I had a remember what myelopathic meant and then I remembered what he meant. Myelopathic is referring to the spinal cord. What my doctor means is that my MS is in my spinal cord not in my brain. All my symptoms fall…
It’s Friday and I’m exhausted. A shocking statement from me, right? Why do I feel like this week was so long? It just feels like I did a lot this week when I really didn’t. I am not even done. I’m off to my neurologist this morning. This is my normal MS neurologist, not the specialist. Neurologist was as expected. This is my neurologist that diagnosed me almost 22 years ago. He treats me more for my various symptoms where…
Another nasty fall on Saturday morning. I took off the towel rack in my daughter’s bathroom for the second time. My contractor asked if I wanted to install a more secure bar like I have in my own bathroom and like an idiot I declined. Now I asked for the more secure bar to installed next time he is here. In the meantime I am using my own bathroom which both my wheelchair can get in and has the safety…
My doctor appointment went as expected. I will be continuing on Rituxan for the foreseeable future. There really is nothing on the market for me to change to at this point. The question about me getting worse, isn’t really a question, it’s more of a fact. That is what secondary progressive MS is, it’s steady decline or worsening of symptoms. That is what I have and they are really no drugs for that, at least for me. Mayzent Is on…
Today is my mom’s birthday, 3 days before mine. Happy birthday mom!!! My birthday is here again. Came fast. My lucky day and number 22. I have no plans because we celebrate my birthday on Thanksgiving. That has always been the tradition. Actually we celebrate both our birthdays on thanksgiving because we are together. This year will be no exception but I am actually going to dinner with my mom tonight too. My stepdad and I have to take a…
I’m sitting in my van outside my mom and stepdad’s house. The home I grew up in but haven’t entered in close to a year. I became unable to navigate the deck steps to get inside. Between those steps and the leaves I can’t even imagine how slippery it is besides difficult. Today I’m here because they are installing a ramp for me through another entrance in the house. Just in time for Thanksgiving. This will be the first time…
#just wanted to add this note because this was such a dismal post. A few hours after I wrote this post I realize something very important, with secondary progressive MS you are not functional one day to Stuck on the floor another. I don’t have relapses anymore. I now realize I was sick with this abscess infection and it played havoc with my MS. So yes, this is a possible future for me with MS, but it won’t happen overnight….
Last night was a very bad night. All my family and friends who haven’t heard the story I’m sorry you’ll be hearing it through my blog. I am fine. If I wasn’t I wouldn’t be writing this today. I played mahjong yesterday for the afternoon and got home around 3. I was completely exhausted more than normal. I started feeling achy as well. I think I was running a low grade fever because of this abscess on my stomach. More…
I realize something last night, for all my complaining about fatigue, I’ve been staying up most nights till 10 o’clock. If you look back to before I saw my doctor, I was in bed by eight and asleep by 8:30. https://multipleexperiences.org/2019/09/03/trip-to-the-neurologist/ This is before he gave me the Adderall. Yes, my body isn’t recovering from my exercise. Yes, I’m still exhausted and finding it hard to move about as easily as I was. However, I’m not at that stage of…
