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Tag: difficulties with ms

Multiple Experiences is on vacation

Multiple Experiences is on vacation

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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…

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I’m feeling ok, another infusion in the past

I’m feeling ok, another infusion in the past

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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…

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Multiple sclerosis isn’t just my diagnosis

Multiple sclerosis isn’t just my diagnosis

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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…

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Infusion or no sleep is kicking my ass

Infusion or no sleep is kicking my ass

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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,…

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Hoping for a better tomorrow

Hoping for a better tomorrow

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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…

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Rituxan infusion pre-meds sickness

Rituxan infusion pre-meds sickness

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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…

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Feeling fine still but attitude needs an adjustment

Feeling fine still but attitude needs an adjustment

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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….

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A IV port

A IV port

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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…

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Rituxan infusion setup, far from a smooth path

Rituxan infusion setup, far from a smooth path

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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…

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It’s the little things that make you proud

It’s the little things that make you proud

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I’ve written many blogs showing things that I’ve accomplished over the years with multiple sclerosis. That is partially what this blog is about. There have been some in reference to my daughter https://multipleexperiences.org/2017/05/27/my-daughters-triumph-being-deaf-with-cochlear-implants/. Many about my workouts https://multipleexperiences.org/2021/01/27/im-kicking-ass/Lots about attitude and positivity https://multipleexperiences.org/wp-admin/post.php?post=2350&action=edit. However yesterday I think I had one of my biggest achievements so far, I fixed the dead bolt lock on my door. This might sound funny to you but to me it was a really big deal….

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