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Tag: living with a chronic disease

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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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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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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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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I don’t recommend Physical therapy during the summer

I don’t recommend Physical therapy during the summer

Before I start my blog I want to wish my dear friend Hindi a Happy 50th Birthday. I love you. Have the greatest day. I’m melting. I am fully inside with the AC cranking but I feel the heat inside my bones. I was trying to transfer to my comfy chair this morning and it took me 10 minutes. I didn’t fall but my legs were like jelly. I kept having to repositioning myself to get the right stance to…

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MS won this time

MS won this time

I had a very disappointing physical therapy session yesterday. I walked about a hallway and a half. The second full hallway still being my goal but once again escaping my grasp. I got tired and tried to sit for a second or two before I started my trek home. That was probably the beginning of the bad decisions. The upright walker isn’t easy to turn around with but even harder when you are trying to turn around to sit. There…

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Positive quotes for multiple sclerosis

Positive quotes for multiple sclerosis

I had a lousy physical therapy session yesterday. Actually pathetic was more like it. Lousy multiple sclerosis day and I have no idea why. My physical therapist says he wished he had a manic pill to cure MS. I would settle for a pill that gave me the day off or even an hour off. I miss being able to dance. I’m watching this tv show about dancing and I could never move the way they do. However what I…

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Kesimpta was approved

Kesimpta was approved

I broke my glass coffee pot this weekend. This seems to happen every two years if not yearly. I do have to say the last time I wasn’t the one who broke it but I shouldn’t brag because I’m pretty sure every other time it was me. I don’t buy expensive coffee pots for this precise reason but I really hated my last purchase. I always put cinnamon in my coffee grinds and this basket constantly caused the caused the…

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Kesimpta was denied

Kesimpta was denied

My neurologist and I decided we were going to switch to Kesimpta by my next infusion date. https://multipleexperiences.org/2021/04/26/possibly-switching-to-kesimpta/. My doctor wanted to start the process in July although my next infusion date isn’t until September. We entered the prescription into the pharmacy to start the process. It was less than 24 hours later that I received the denial from my insurance. The denial reason was that this medication wasn’t necessary and there may be other medication that can met my…

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