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Tag: ms over 20 years

Nap time

Nap time

I took a nap yesterday. First time I did that in ages. I didn’t sleep well the night before. I knew I needed more sleep. I kept my pajamas on and stayed under my blanket. I spoke to everyone I wanted to talk. I text my daughter and mom to let them know that I was going to sleep. I even put my phone on do not disturb. Thankfully, the house phone didn’t ring through out the afternoon. I appreciate…

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Multiple Sclerosis Adapt and Accept

Multiple Sclerosis Adapt and Accept

Friday again. It was a week ago I wrote about weather changes once again affecting MS symptoms. https://multipleexperiences.org/2022/06/17/mentally-strong/. I had changed PT from Monday to Wednesday because I was having a rough day Monday. Well I guess I was having a rough day Wednesday too. I couldn’t walk five steps. So much for my goal of walking the hallway and back to my condo door. It wasn’t even close. I honestly couldn’t walk a few feet out my door. I…

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Mentally Strong

Mentally Strong

I am still running on empty this week. It is very strange, I walked the furthest I walked on Monday. Wednesday and Thursday I’ve had difficulty standing up and transferring. When I say difficulty, I mean it’s been harder than it’s had been over the previous weeks. It is requiring more energy to get myself up into the standing position. It is more laborious moving my feet. Good MS days and bad days. I have had some pretty intense workouts…

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Always Fighting

Always Fighting

Some days are better than others. I walked the hallway again yesterday and it was so hard. Ok, it was hard the first time I did it but it was so much harder yesterday. My right leg, which is normally the leg that gives less issues, was very difficult to move. It was difficult from the hip flexor. I had problems moving the leg forward. My left leg, which normally drags, has difficulty clearing a step without my foot impeding…

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Stubbornness and Defiance

Stubbornness and Defiance

It has taken me almost 6 months but I finally did it. I GOT UP FROM MY COMFY CHAIR. I got up by myself. I actually started standing up when my therapist was a few feet away from me. I didn’t want anyone to touch me. I knew I could get up. I didn’t want to have that hand on me for guidance. I wanted my victory. I deserved my victory. I know the walking was the biggest thing to…

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Shocking to everyone including me

Shocking to everyone including me

I was sitting up at the end of the bed when he got there. I popped right up to stand. My PT therapist said try to take a step. I was standing up with one of those silver walkers. Well, I took a step. It was my first step since the end of December. I then took another and another. I was going forward and back in the small space of my room. I was getting tripped up having to…

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Busy Day

Busy Day

I’m actually writing this on Thursday evening. I had a long day. Since the change in my aides shifts, I am up at 7am. This morning I was up at 5. I had one of those MS symptoms that plague me whenever it is a inconvenient time. My feet were in pain. More like my heels. I felt like pins were simultaneously sticking into both my heels at the same time. Neuropathy. I know it well, but this time it…

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Still exhausted

Still exhausted

I woke up yesterday and felt really good. I got up, into my wheelchair and I finally was able to stand on the scale. I held my my balance for a split second allowing the scale to actually show an accurate number. I was 138, fully dressed. I never weighed myself dressed. That is 3lbs from my ultimate weight goal. A goal I never even thought was going to ever really happen. Well I guess there is something to say…

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A week off

A week off

I’m not grey anymore. My daughter dyed my hair yesterday. A grueling experience. Not because of her, but I had to sit in my wheelchair for an hour. I have been really tired this week. On Monday I wrote I blogged I wasn’t having any reactions to my Rituxan infusion. Today I have to admit I might be having a reaction to my Rituxan infusion. I am definitely feeling run down. What is really worse is my hands. I’m not…

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Rituxan Infusion Successful

Rituxan Infusion Successful

Well I finally was able to take my MS meds again. Last time was January 19. That was Kesimpta. I made the decision to go back to Rituxan after using Kesimpta for six months. I had 3 UTI’s, Covid and a pneumonia within that 6 months. I didn’t think it was the drug for me. I have had issues with Rituxan in the past, skin issues. I can’t say all my infusions have been smooth sailing. I just never needed…

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