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…
Yesterday was the last day of the antibiotics. I have been taking a prophylactic drug from the time I got home from the hospital on March 5th. I was taking Atovaquone. This is an anti-fungal, anti-parasite liquid. It is supposed to be banana flavored. I personally would never eat a banana if it tasted like that. This medication is an antibiotic used to treat and prevent pneumonia. It is given to people that can’t take other antibiotics, have HIV or…
I last took a Kesimpta shot on January 19. It is now the beginning of March. I had this dilemma of being behind my shot date in January. After Covid and a UTI that put me in the hospital the first time, I needed to be well before I took my shot. That ended up being about 6 weeks after the last shot Kesimpta dosage instruction is every 4 weeks. I’ve never not taken a disease modifying therapy from the…
After all my worries over changing to Kesimpta, I’m now pretty darn happy I did. I felt fine after the shot on Thursday and all through the weekend. To not have to do a six hour infusion followed by 3 plus weeks of feeling lousy, I have to say I’m pretty excited. No more steroids. No more IV vein issues. No more aggravation with the former pharmacy over the correct infusion supplies. I must say that is a win, win,…
I broke my glass coffee pot this weekend. This seems to happen every two years if not yearly. I do have to say the last time I wasn’t the one who broke it but I shouldn’t brag because I’m pretty sure every other time it was me. I don’t buy expensive coffee pots for this precise reason but I really hated my last purchase. I always put cinnamon in my coffee grinds and this basket constantly caused the caused the…
I’ve been so tired lately. I never really took in to account how my body would react to work being done in my place. I knew I would be shifted around slightly but didn’t think it was a big deal. I was clearly wrong. By the time the afternoon comes around I’m struggling to get myself to the bathroom. I’m back to dreading every time the need comes. Sometimes I’m so tired that the hesitancy I talked about recently Bladder…
It is beautiful out although slightly chilly. That doesn’t stop me from opening windows to let some fresh air through. I don’t mind the chill, it feels nice because the sun is hitting this side of the building. Once the sun starts to move I will start to freeze. The temperature is only 46 degrees out, not really windows open weather. It’s that sun hitting so directly that adds so much heat. It feels really nice. I’ve been feeling pretty…
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…
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….
