I posted my first video blog yesterday. A beautiful day in the neighborhood. I think that may become my new way to blog. Hopefully I’ll become less nervous and stupid in front of the camera. I’m not one who likes photos or videos of myself so it was a little bit of an awkward position for me. But I did step out of my comfort zone and I did a blog that was much easier on my hands and a…
I have to be honest, I’m not sure I still want to blog anymore. I have had this feeling once before over a year ago. https://multipleexperiences.org/2020/01/18/do-i-continue-to-blog/. At that time I realized I still loved writing about my life daily. I have poured my heart out in so many of these posts. I’ve shared every bad day and every embarrassing MS moment I deal with daily on the pages of multiple experiences. My stories are getting repetitive. I’m running out of…
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’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,…
Yesterday was not my greatest morning. Belly issues but I was able to avoid the mess of things by getting in the shower fast enough. I made it in the middle of the night and the morning. I was so proud of myself. Such a stupid thing to be proud of, yet I was. I was until I took a slip in the shower. It’s a small space and at first I held myself up slightly but I couldn’t hold…
Weather is changing in NY. The days are longer and I’m seeing boats going out on the ocean. I once again find myself staring out my balcony window thrilled that there has still been no construction on the hotel that will block my view from my chair. I one day will have to sit on my balcony to get lost in my view but so far, today is not that day. I’m feeling better now. The body aches have left,…
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…
