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Tag: living with MS

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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A Blue Tuesday

A Blue Tuesday

I was feeling slightly blue yesterday for no reason in particular. I slept in, not really wanting to get out of bed, but nature called. I did a workout but is was below even my lowest of standards. I just had no energy and I was trying to lift weights. I just had a difficult time with each move even at low weights. I certainly didn’t get any feel good endorphins from my pitiful workout. I got a lot accomplished…

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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 MS 2021

Bike MS 2021

It has been another fast week. I keep saying that every week. I think time is speeding up and I am really not looking for any speeding tickets. I am, however, ready for my sweatshirts and warm pjs so the 70 degree weather can go. I am ready to be bundled up with hot chocolate again. While I’m thinking about bundling up my brother has been out biking getting himself ready for Bike MS. I always think to myself during…

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Sometimes the dots don’t connect

Sometimes the dots don’t connect

Well you can get Covid even after you’ve been fully vaccinated. My poor sister has been feeling awful this past week. She tested positive for covid. Like so many people, me included, we’ve gotten a little lax with the mask. I don’t think the vaccinations are lasting as long as they originally thought they would. I got my booster already and I would prefer not to be doing that every few months. I do think that the vaccine need more…

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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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Bionic Gym highly recommended

Bionic Gym highly recommended

After all my worries over changing to Kesimpta, I’m now pretty darn happy I did. I felt fine after the shot on Thursday and all through the weekend. To not have to do a six hour infusion followed by 3 plus weeks of feeling lousy, I have to say I’m pretty excited. No more steroids. No more IV vein issues. No more aggravation with the former pharmacy over the correct infusion supplies. I must say that is a win, win,…

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First Kesimpta dosing shot

First Kesimpta dosing shot

I started getting freaked out reading other people’s first shot reactions on the Facebook Kesimpta group. I thank Sherry for commenting on my Kesimpta delivery blog and telling me about the group but it didn’t help my nerves. Thankfully, I had a video conference with my neurologist yesterday. She explained Kesimpta is nothing like the interferon shots that I took for the first 12 years. The shots that still give me those horrible flashbacks that are causing all this fear….

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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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