I wrote this blog post on November 7, 2016. Almost 4 years ago to the day. I was originally going to just link it in this post when I realized I would probably be repeating the same general things. Obviously Covid has made my MS daily activities null and void but I’m not complaining. Truthfully my MS is much different 4 years later. I’m mostly in a wheelchair now. I’m in a new place, not my apartment anymore. Things are…
Still humid in NY. It rained but that didn’t help. However, i did see after tomorrow temperatures start to drop. Cross your fingers. I added another permanent link to an article that talks about different kinds of pain and how it effects sleep. That includes our wonderful multiple sclerosis symptom of restless leg which many of us deal with. They had some very useful tips so check it out. I also have the MS Gym link on my permanent links….
Good Morning to everyone. I think I’m officially through all my infusion side effects now. I’m happy to say I’m doing ok. Now I’m waiting for the New York weather to start resembling normal weather for the end of September. I’m ready to turn of the AC and bring out my comfy sweatshirts I love so much. I find the fact that it is humid very annoying. I love sweating during my workouts but hate sweating when I’m not doing…
First let me say it is difficult to write my blog in my current position. Minx likes to snuggle in my neck. I am not complaining because they are so cute. Plus I’m not having a good day and I need a lot of love. I woke up tired and with a migraine. Not a good combination. The weather in New York is not only warm but humid. Weather, Infusion or just fatigue. I was doing my MS gym exercises…
Yesterday was so rough. Like complete physical exhaustion rough. Wishing I didn’t have to use the bathroom rough. Each time I had to get up was so much effort. Is this still from the infusion? Or is this from the weather change? We’ve had some crazy weather changes over the last week in New York. One day it was 70° then all of a sudden it dropped to 50° I actually had the heat on one day. I was bundled…
I’m chatting with my stepmom yesterday and the conversation about my aide comes up. First like everyone else is the question of an aide for the weekend. I am still not there as I’ve told every other family member who wants me to have the coverage. Then she asks me what about at night? To which I make the mistake of replying, “I don’t need an aide at night. I haven’t had a fall in ages. ” I immediately say…
I think I’m through the worst of the infusion side effects now, more or less. I didn’t have the greatest weekend. By the end of the days my legs felt very weak. I did sleep on my chair both nights. Thankfully I did because Saturday night, without my water pill, I was still up every two hours to use the bathroom. My legs would have been too weak to get me up and down into my bed. I made the…
This blog is coming to you live from my living room floor. I did not make my transfer well after my exercises and slid off of my comfy chair. I was in perfect position to get myself up but knew I had one shot at it. My legs failed and back down I went. After flopping around on the floor trying to change positions, I finally gave up. My aide will be here soon I don’t think my puppies mind…
You honestly can’t make this shit up. I’m sorry for cursing in line one of my blog but I am so aggravated right now I don’t even know where to start. At 8:45 my phone rings and it’s CVS pharmacy asking me when my infusion is. ARE YOU KIDDING ME??????? I’m like you have got to be joking. I called three weeks ago to start this process. They were so helpful, so nice. I was on the phone for an…
I called the pharmacy first thing this morning and they reassured me that my Rituxan will be delivered first thing tomorrow morning. I am not going to call my infusion nurse and I’m going to hope for the best. Normally my infusions don’t go smoothly. There always seems to be a problem somewhere through the process. When the pharmacy changed I thought, great another infusion to give me agitation. Then it was all arranged weeks in advance. I was shocked….
