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Tag: Multiple sclerosis

My magic button is broken

My magic button is broken

I’ve been chilling in my room as work has begun in my kitchen/living room area. Making things more handicap accessible. Hopefully I will hit less walls with the additional space but I make no promises. Let’s be honest here, my wheelchair driving hasn’t improved. I’m actually waiting once again on a wheelchair repair. This is on the button that was placed on the side that immediately lifted the chair up. My magic button that has been a true lifesaver. I’ve…

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Bladder Hesitancy

Bladder Hesitancy

I’ve written so many blogs about my numerous “accidents” but I never discuss the other way. I actually experience both of them which is why Botox wasn’t an option for me. I dealt with hesitancy long before I dealt with the urgency and the accidents. What is urinary hesitancy mean? If you have trouble starting to urinate or maintaining urine flow, you may have urinary hesitancy. If you ever experienced hesitancy you know how it feels. Your bladder is full,…

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Bluetooth sleep mask

Bluetooth sleep mask

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…

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Multiple Experiences is on vacation

Multiple Experiences is on vacation

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

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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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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