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Author: Youtwohearts

A day in the life with multiple sclerosis.
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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A Swinging Saturday Night

A Swinging Saturday Night

I must say i had an eventful Saturday night. Not exactly like my old days at Jugs and Strokers Drinking, trying to play pool and hanging with my friends until 4am. However, based on my life lately, this was eventful. The building’s fire alarm went off around 8pm. I was in my pjs ready for bed. Usually the fire alarm is a false alarm. This time you could smell something funny. You could see a haze of smoke at the…

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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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My own discouragement rant

My own discouragement rant

I was determined to get into my comfy chair. Ok getting in isn’t the problem, it’s getting out. The chair is not only low but mushy. I don’t have anything very solid to push myself up to a standing position. I tried to angle the wheelchair in front of me, using the chair’s arms. Unfortunately, that didn’t help either. The end result was being lifted up by both my physical therapist and the aide. I was discouraged. Getting into, excuse…

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My weekend review

My weekend review

Welcome back to Monday. We end up here quickly it seems. I am back to physical therapy today. I enjoyed my week off. I really enjoyed being with my beautiful daughter. She has just become this sweet woman. Her presence just made us realize how much she is missed. I can never forget how grateful I am despite any chronic disease. I don’t feel like doing the whole grateful speech so don’t worry. I really have no specific direction for…

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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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A real workout from bed

A real workout from bed

I’m happy to report I haven’t felt any side effects from the infusion the other day. https://multipleexperiences.org/2022/05/06/rituxan-infusion-successful-2/. I might feel slightly more tired but it hasn’t stopped me. On both Saturday and Sunday, I did an actual workout from my bed. I put on one of my favorite cardio exercises programs from YouTube. It is a workout from Adapt to Perform. https://youtu.be/qbFvZEPTXDk. I had my Bionic Gym on at a high intensity, picked up a pole and turned on my…

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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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Home visit doctor

Home visit doctor

I had my first in home doctor visit on Monday. I must say I thoroughly enjoyed waiting in my bed than a stuffy doctors office. I was given a two hour window of when they would be here. She was here right in the middle of the expected time. Very nice woman. I was pleasantly surprised. She checked my skin. She checked for any bed sores or any other skin issues that can happen when someone is in bed for…

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