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Tag: ms symptoms

My week finding agencies

My week finding agencies

Well after my blog on Wednesday, I figured I better lighten things up a little. I just don’t know if I have anything light to talk about. It’s not that anything is necessarily bad but it isn’t that great either. I had terrible spasticity this week. My legs have been super stiff. It has made getting up out of my chair and bed difficult. It is very difficult to move when one or both of your legs don’t want to…

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Intake with Suffolk Independent Living Organization

Intake with Suffolk Independent Living Organization

Yesterday started with a bang, and not a good one. Unfortunately, I heard a crash of what only could be a car hitting something. I got up quickly to look, startled. Well you can imagine how that went. I realized quickly that in case of an emergency, don’t ever count on me. In my startled reaction to the sound, I got up and fell. It took me some time to get myself up. Thankfully, there were many people from my…

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Nursing aide hours

Nursing aide hours

I had my lovely sister over this weekend. We were discussing the possible change in my nursing aide hours. This is all coming from the incident when I fell and couldn’t get up. https://multipleexperiences.org/2021/08/27/i-pressed-the-med-alert-button/. After this unfortunate issue, my mom and step dad decided I needed more hours of care. I actually had an evaluation with my insurance a few days later by lucky coincidence. We made a request to change my nursing aide hours from 8 hours Monday-Friday to…

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Bike for MS

Bike for MS

Once again my brother is training for his 50 mile bike ride for multiple sclerosis. Each year he does this fundraiser in my name. Raising money riding a bike, something I’ve been unable to do for at least 8 years. Please help us find a cure for all of those who suffer daily but are still warriors. https://www.facebook.com/donate/157731676220745/?fundraiser_source=external_url Why We Want to Create a World Free of MS It’s now 13 years ago when I said I wanted to ride…

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Weekend plans, or not

Weekend plans, or not

When your day starts off with an accident and a fall, you aren’t feeling so optimistic for a good MS day. Yesterday evening was my second Kesimpta shot. I decided to once again do my thigh region. I did my right leg this time. That might not have been the best place. As soon as the needle pierced the skin, my leg immediately went into a super spasm. I twitched and moved during the injection. It hurt. I know that…

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Kesimpta delivery scheduled

Kesimpta delivery scheduled

I got a call yesterday from the pharmacy about the delivery of my new medication, Kesimpta. I am being mailed 3 doses for my first month. I take a shot weeks 1,2 and 4. From there it will be once a month. The shot is recommended to be in my thigh, stomach or upper arm. All the memories of the years of Betaseron come flooding back. Betaseron was my main MS drug until Gilenya, a pill, came out. 12 years…

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I pressed the med alert button

I pressed the med alert button

I got the Covid booster on Wednesday. I felt okay until the early morning hours of Thursday. That’s when I started feeling achy. I attempted to go to the bathroom and I didn’t have the strength to get myself off the toilet. Thankfully I was able to get myself up from my wheelchair. If I knew that this would be the beginning of the horrible day I was about to have, I wouldn’t have done anything different because I couldn’t…

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Out of my routine

Out of my routine

I’m anxious today. I’ve had too many days already out of my normal routine and today is no different. I have to get the covid booster at 12 and game day in the building is at 1. I just finished exercising and getting dressed but I feel rushed. It didn’t help that I smacked my head on these ridiculous metal bars that are right behind my head on my wheelchair. All I need to do is not lean back straight…

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The week ahead

The week ahead

It was a non existent hurricane in my area yesterday. Not just non existent but after the rain in the morning we didn’t even have rain. My mom, who lives 13 minutes from me, had rain on and off all day. My friend in the town next to me also had rain all day on and off but not me. It was so strange. The sun even started coming out while my mom was experiencing pouring rain. She didn’t believe…

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Sometimes life is unfair

Sometimes life is unfair

Happy Friday. I’m sitting here deciding what I want to write about because I know I have things I want to say, I just don’t know if I want to say it in my blog. My blog,that I’ve written the most embarrassing moments, I suddenly don’t want to put my feelings on display. Unfortunately, my blog has been my place I work my shit out for years now. I don’t think I can truly move forward until I figure it…

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