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The Routine

The Routine

I’m sure I’ve blogged about this at some point because I don’t do well with disruptions. The days of spontaneous activities have long been gone. I could never just meet someone for dinner at short notice. My life, or I should say my activities, are planned both mentally and physically. Everything I do requires a tremendous amount of effort. Everyday is different as to which activity will put me over the edge. The activity might be the same and the…

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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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Multiple sclerosis isn’t just my diagnosis

Multiple sclerosis isn’t just my diagnosis

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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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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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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Ocrevus vs Rituxan

Ocrevus vs Rituxan

My infusion scheduled for March 17. I’ve been on many of the disease modifying MS drugs over my 23 year span with the disease. Betaseron still holds the record of 12 years but that also has to do with the drugs that were available when I first got diagnosed. I have been on either Rituxan or Ocrevus since 2016. I group these two drugs together for very specific reasons, they are fundamentally the same. The biggest difference is Rituxan is…

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Happiness is two dogs and a comfy chair

Happiness is two dogs and a comfy chair

I’m exhausted. I just can’t start this blog any other way. I’ve been tired all week, shocking, I know. I think a major part of my fatigue has been the broken arms of my wheelchair. It was so difficult to get myself in position with that broken arm. I had my appointment yesterday. They were coming between the hours of 12-4. They showed up at 6:45. I was just so thankful they came I didn’t care what time it was….

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MS gym program exercise in a chair

MS gym program exercise in a chair

Can someone please explain this weather to me? One day I’m bundled in my sweatshirt putting on the heat. The next day I’m opening windows overheating at night under my blankets. No joke!!! I overheated last night in my bedroom. It made for a very long night. I had a super difficult time getting back into my bed after one of my bathroom trips that I really contemplated sleeping in my chair. I slept with my fan on once again….

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