It’s my birthday tomorrow. 51!!! I’m middle age. I think my body has been middle age since I was 43. That was when multiple sclerosis hit me with the last relapse that started my path of true disability. It’s been 8 years since that last relapse. It was when I was switching from Tysabri to Rituxan. I made the mistake of stopping Tysabri because I actually had the thought of switching to an experimental drug. I needed to be off…
I am half way through my Rituxan infusion. Chilling out watching Ink Master. I was smart this morning. I kept my arms covered despite being slightly warm. I know, all too well, that my cold arms do not help when trying to start an IV. I overheat so easily so there is usually a fan blowing right next to me. I might not feel cold but my arms and hands are always cold to touch. I kept a sweatshirt on…
I’m sneezing. My first cold of the year. I have been taking my oregano oil for a few days. It has probably helped but it hasn’t stopped the cold like it has in the past. I think things are just not affecting me the same since my whole pneumonia debacle. Oregano oil use to knock out anything as soon as I felt the twinge. Now I feel like it doesn’t do the trick. I’m not use to actually feeling run…
Today I am getting blood work done. My specialist wants to see a few things. First, my B cell counts. With the hundreds of blood tests I’ve had done in the hospital, that wasn’t done. There was no need to break out the specific white blood cells for a pneumonia. The second thing is my immunoglobulin blood test. I was running very low in the hospital throughout the few months. The pneumonia certainly could be to blame. However, every time…
I’m thankfully doing better today because I slept. Never under estimate the power of a good nights sleep. I was able to exercise a little this morning. I purposely decided to keep it simple and just do my MS gym exercises. There was an entire revamping of the MS gym and I actually started the from the very beginning again. That means the exercises aren’t as intense. I was pairing them with chair cardio everyday but knew that wouldn’t be…
I haven’t slept well for two nights now. I spent the first night with those belly issues and last night with bladder issues. I was using the bathroom every hour. I honestly think this was somehow related to the infusion. I have had nights where I’ve used the bathroom frequently but every hour is something that is a rarity. Yet that was my night. This is the second day in a row that I’ve hit my 12 hours of stand,…
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…
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 never watch TV through my TV carrier. I always watch through my Firecube. No matter what it is, unless it’s something that I record, I’m never on my TV. That being said, it’s also very rare I see commercials. However I was catching up on old Bravo shows that I neither recorded or watched while they aired. On the Bravo app, there’s commercials. When you’re watching an entire season of some thing you end up watching a lot of…
