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Tag: Ms progression

When transitioning to a wheelchair be sure to see an OT for evaluation

When transitioning to a wheelchair be sure to see an OT for evaluation

I completely understand why I have the been in the wrong wheelchair all this time. I had a very different experience this morning in preparation for a new wheelchair. I was asked questions to start with. Questions about my home. What accommodations I have done in my home thus far? What is my bathroom shower set up? What is my bed I sleep in? How wide is my kitchen? What difficulties do I have in the bathroom with my current…

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I’m going out…my wheelchair evaluation

I’m going out…my wheelchair evaluation

I’m going out into the zombie apocalypse tomorrow. Wish me luck. It will be my first time out in almost two weeks. I’ve been very good at hiding myself away to keep safe but now I must make an appearance. I finally got an appointment for a wheelchair evaluation at my physical therapy office. I’ve waited four months to be seen. I couldn’t decide to not go. They assured me that the staff is in masks and the gym is…

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Rituxan infusion on Sunday

Rituxan infusion on Sunday

I’m a bundle of nerves which is so unlike me. Between my daughter’s school having a positive case of the virus and choosing to let her stay in Albany My daughter school has a positive case of the coronavirus I feel worried. I’m the mom, I’m supposed to protect my kid but instead I’m keeping her away from me, protecting myself. She’d rather be there, thankfully, but I know the decision is also for my own benefit. My daughter will…

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Not liking physical therapy

Not liking physical therapy

So after a second day of consuming a regiment of oregano oil and using Doterra Breathe, I got into bed sneezed once and never sneezed again. Achoo-ing through the night. Woke up fine. So strange!!!! I’m doing much better with the Provigil. I’m so happy to report. I am no longer waking up exhausted as if I never slept. That has been such a huge difference that I’ve been able to get back to my life. I have still been…

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Another nursing evaluation

Another nursing evaluation

I had a nurse evaluation yesterday for the agency. Nothing shocking, mostly paperwork stuff. My medications were listed for the dosage and times I take them. I’m taking 9 different medications at 48 years old. That’s a lot of pills. If you include the vitamins it’s 17. A crazy number yet they all serve a purpose and that’s what the evaluator and I were discussing. Most I take at night because they cause drowsiness so I got the warning about…

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MS and body temperature

MS and body temperature

Everything worked out with the agency. They found an aid to cover the days that my normal aid is out. She is very nice and the dogs are fine. Thankfully it’s all good. I just didn’t sleep well last night. I woke up at 3am and really never fell back asleep. I was sweating all night too. Of course I was wearing a white T-shirt that my hair color has now dyed red spots on. I should have turned my…

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One day at a time

One day at a time

Still unfortunately feeling shitty. Once again canceling activities. The good news is I’m sleeping better, that really helps. Of course I’m a few weeks away from my infusion of Rituxan which had issues last time.Whether the issues were actually caused by the infusion or not, we still don’t know, but my concern is there to say the least. https://multipleexperiences.org/2019/09/17/blisters-on-breast/. Not to mention you always feel somewhat fatigued after you do the infusion so the whole thing has bad timing. I…

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Happy 22nd anniversary multiple sclerosis

Happy 22nd anniversary multiple sclerosis

22 years ago started my second multiple sclerosis relapse that lead to my diagnosis five days later. My first was optic neuritis but by itself had no name. It was 6 months later on Valentine’s Day weekend when I moved into my new house and my left side started to go numb. What started in my foot quickly traveled through my entire left side up to my face. I had difficulty walking, muscle atrophy and numbness that would never fully…

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Smiling through exhaustion

Smiling through exhaustion

Back to feeling rundown again. Spent yesterday morning in bed with a migraine. Migraine is gone but I’m still exhausted. I went into bed before 9pm yesterday and slept straight through until 4:30am. That is a record. I went back to sleep and woke up at 8:44. I had to take my car in first thing this morning otherwise I might have spent another morning in bed. This is a rough feeling as anyone with multiple sclerosis can tell you….

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I am a Multiple Sclerosis Warrior

I am a Multiple Sclerosis Warrior

I have to say things in my family have been sad. Bad news received about a loved ones health has hit everyone hard. It puts having multiple sclerosis in its respected place. A place that has always helped me deal with my disease on a more positive level. I’m here!!! I didn’t receive a death sentence when I was diagnosed with multiple sclerosis. My disease could be difficult but I could still live a very rewarding life. I’m coming up…

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