Hopefully I am through the worst of it now. Yesterday was pretty bad. I believe my exact words to my mom were, “I am four breaths shy of death”. There wasn’t a spot on my body that didn’t hurt. It’s a good thing these infusions happen every six months because you have plenty of time to forget. I can even go back and look at past blog posts and see exactly how I felt. However, it’s a little different each…
So far I feel fine since my Rituxan infusion, although I am all too aware it won’t stay this way. After being on Rituxan or Ocrevus for the last 4 years you kind of get a feel for these things. I do have to say I don’t feel bloated from the infusion. I think it is because I drank so much water. For some reason my mouth became Sahara desert dry during and the night after I received the medicine….
It’s the day. It’s finally here. I’ve been doing these infusions for so many years now. I was on Tysabri for a few years prior. You”d think I’d be totally accustomed to these things by now, but I’m not. I get really anxious before the infusion starts. Partially because finding my veins for an infusion is not easy. If I’m doing blood work it’s very rarely a problem. However, whenever they have to find a place to keep an IV…
My Rituxan infusion has once again been a complete disaster getting the necessary supplies and drugs. I would love to blame it all on CVS specialty pharmacy but my doctor’s assistant is partially to blame. What started a month ago has come down to the wire yet again. My third box of supplies has just been delivered this morning. All I can say is thankfully I know how my drug is administered. If I didn’t, this would’ve been a bigger…
My infusion scheduled for March 17. I’ve been on many of the disease modifying MS drugs over my 23 year span with the disease. Betaseron still holds the record of 12 years but that also has to do with the drugs that were available when I first got diagnosed. I have been on either Rituxan or Ocrevus since 2016. I group these two drugs together for very specific reasons, they are fundamentally the same. The biggest difference is Rituxan is…
I’m exhausted. I just can’t start this blog any other way. I’ve been tired all week, shocking, I know. I think a major part of my fatigue has been the broken arms of my wheelchair. It was so difficult to get myself in position with that broken arm. I had my appointment yesterday. They were coming between the hours of 12-4. They showed up at 6:45. I was just so thankful they came I didn’t care what time it was….
Can someone please explain this weather to me? One day I’m bundled in my sweatshirt putting on the heat. The next day I’m opening windows overheating at night under my blankets. No joke!!! I overheated last night in my bedroom. It made for a very long night. I had a super difficult time getting back into my bed after one of my bathroom trips that I really contemplated sleeping in my chair. I slept with my fan on once again….
It’s 48 degrees out and I’m in a complete sweat. I haven’t even worked out yet because I have therapy this morning. I am sitting around waiting for my therapist. I have opened my windows but the breeze wasn’t enough, I just turned on my fan. I’m dressed in a thin pant and a t-shirt. WTF!!!! I just got a call my therapist is running late, thank goodness. Hopefully I can get myself cooled down before he gets here otherwise…
Today I have a very long MRI. It is of the brain, cervical and thoracic spine with and without contrast. I would say this is probably at least my 22nd MRI since being diagnosed with multiple sclerosis over 22 years ago. I am no stranger to these tests. I have actually had numerous life epiphanies during my MRIs over the years. One was when I decided I wanted to be a bookkeeper/accountant. I started to look in the papers for…
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…
