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Tag: living with a chronic disease

The things we don’t say

The things we don’t say

Sometimes I stare at this blank page and I really know what I want to say. Other times I really don’t have a clue. There are times I know what I want to say but I am to scared to say it. I fear that I might not write it properly and it would be misunderstood. This might be one of those blogs. Let me say right away I am not depressed. I am not suicidal. I am not trying…

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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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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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