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Tag: diagnosed with MS

Cold outside and I’m sweating….

Cold outside and I’m sweating….

It’s 48 degrees out and I’m in a complete sweat. I haven’t even worked out yet because I have therapy this morning. I am sitting around waiting for my therapist. I have opened my windows but the breeze wasn’t enough, I just turned on my fan. I’m dressed in a thin pant and a t-shirt. WTF!!!! I just got a call my therapist is running late, thank goodness. Hopefully I can get myself cooled down before he gets here otherwise…

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MRI Today

MRI Today

Today I have a very long MRI. It is of the brain, cervical and thoracic spine with and without contrast. I would say this is probably at least my 22nd MRI since being diagnosed with multiple sclerosis over 22 years ago. I am no stranger to these tests. I have actually had numerous life epiphanies during my MRIs over the years. One was when I decided I wanted to be a bookkeeper/accountant. I started to look in the papers for…

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Support my Brother in Bike MS

Support my Brother in Bike MS

My brother does this every year and every year with me in mind. Please consider donating to a cause that is near and dear to me and my family plus too many other suffers. https://mssociety.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=16843&cmr=5282CE675756&language=en Dear friends,  Each year for the last 12, I’ve raised funds for BikeMS, to directly help those affected by this terrible disease funding research by the MS Society. This year, I’m falling short in my fundraising goal. This is not surprising – people are out…

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My four walls of multiple sclerosis

My four walls of multiple sclerosis

I wrote this blog post on November 7, 2016. Almost 4 years ago to the day. I was originally going to just link it in this post when I realized I would probably be repeating the same general things. Obviously Covid has made my MS daily activities null and void but I’m not complaining. Truthfully my MS is much different 4 years later. I’m mostly in a wheelchair now. I’m in a new place, not my apartment anymore. Things are…

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Weather, Infusion or just fatigue

Weather, Infusion or just fatigue

Yesterday was so rough. Like complete physical exhaustion rough. Wishing I didn’t have to use the bathroom rough. Each time I had to get up was so much effort. Is this still from the infusion? Or is this from the weather change? We’ve had some crazy weather changes over the last week in New York. One day it was 70° then all of a sudden it dropped to 50° I actually had the heat on one day. I was bundled…

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Jinx

Jinx

I’m chatting with my stepmom yesterday and the conversation about my aide comes up. First like everyone else is the question of an aide for the weekend. I am still not there as I’ve told every other family member who wants me to have the coverage. Then she asks me what about at night? To which I make the mistake of replying, “I don’t need an aide at night. I haven’t had a fall in ages. ” I immediately say…

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Starting to feel more like myself

Starting to feel more like myself

I think I’m through the worst of the infusion side effects now, more or less. I didn’t have the greatest weekend. By the end of the days my legs felt very weak. I did sleep on my chair both nights. Thankfully I did because Saturday night, without my water pill, I was still up every two hours to use the bathroom. My legs would have been too weak to get me up and down into my bed. I made the…

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Once again a problem with my infusion

Once again a problem with my infusion

You honestly can’t make this shit up. I’m sorry for cursing in line one of my blog but I am so aggravated right now I don’t even know where to start. At 8:45 my phone rings and it’s CVS pharmacy asking me when my infusion is. ARE YOU KIDDING ME??????? I’m like you have got to be joking. I called three weeks ago to start this process. They were so helpful, so nice. I was on the phone for an…

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Rituxan Infusion Tomorrow

Rituxan Infusion Tomorrow

I called the pharmacy first thing this morning and they reassured me that my Rituxan will be delivered first thing tomorrow morning. I am not going to call my infusion nurse and I’m going to hope for the best. Normally my infusions don’t go smoothly. There always seems to be a problem somewhere through the process. When the pharmacy changed I thought, great another infusion to give me agitation. Then it was all arranged weeks in advance. I was shocked….

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Ocrevus Commercial

Ocrevus Commercial

I never watch TV through my TV carrier. I always watch through my Firecube. No matter what it is, unless it’s something that I record, I’m never on my TV. That being said, it’s also very rare I see commercials. However I was catching up on old Bravo shows that I neither recorded or watched while they aired. On the Bravo app, there’s commercials. When you’re watching an entire season of some thing you end up watching a lot of…

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