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….
It took 4 needle sticks to get my vein for the IV yesterday. Not only stressful but painful. I may have dulled sensation on my skin but it certainly still feels needles. This was my nurses 5 infusion with me. Each time it is getting harder and harder to start the IV. Yesterday this process took us almost an hour. We had to break out the heating pad to try to warm my arm up. It eventually helped, but it…
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…
Is it really Wednesday already? This week seems to be flying by. I received my Covid test results this morning and I was negative as I expected. My county passed down new protocols for someone that was vaccinated. If they come into contact with a person who tested positive for Covid they don’t need to either quarantine or test providing they are asymptomatic. The Covid tracer people are still tracking me daily. I don’t know what to follow so I’m…
I woke up with a killer headache. I use the word woke up very loosely because I haven’t been sleeping well and last night was no different. On a good note, I should reach my 12th hour of standing goal by 2pm. I’ve been going to sleep to a meditation track every night since last Friday. I started off sleeping great but then my daughter tested positive for Covid and I’ve bees stressed. My daughter is positive for Covid. My…
March is a busy month for me starting right out of the gate. I have plans to see people this morning, this evening, tomorrow and Friday. I love having a social life but it always seems to fall into the same week. I have my long hair appointment this week, Cut and color. I never miss my color but haven’t done a cut in a while. Letting my hair grow out some but it now has no style. No matter…
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…
