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Author: Youtwohearts

A day in the life with multiple sclerosis.
Infusion or no sleep is kicking my ass

Infusion or no sleep is kicking my ass

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

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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Multiple sclerosis medication and Liver

Multiple sclerosis medication and Liver

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,…

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Rituxan infusion pre-meds sickness

Rituxan infusion pre-meds sickness

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

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

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 day March 2021

Rituxan infusion day March 2021

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…

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Rituxan infusion setup, far from a smooth path

Rituxan infusion setup, far from a smooth path

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

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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The hard day is done

The hard day is done

I made it through the day yesterday but barely. I was absolutely shot by the time I got home. I got everything I wanted accomplished. I officially have handicap plates on my van. They almost didn’t let me get them. I had a copy of the original DMV doctor form. I didn’t think and grabbed the copy. According to the rules they don’t accept copies. The supervisor finally came over and did a visual confirmation and accepted the form. I…

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