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Tag: daily life with ms

My age 51 my body is much older

My age 51 my body is much older

It’s my birthday tomorrow. 51!!! I’m middle age. I think my body has been middle age since I was 43. That was when multiple sclerosis hit me with the last relapse that started my path of true disability. It’s been 8 years since that last relapse. It was when I was switching from Tysabri to Rituxan. I made the mistake of stopping Tysabri because I actually had the thought of switching to an experimental drug. I needed to be off…

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Colonoscopy and Endoscopy

Colonoscopy and Endoscopy

Hello my fellow blog readers. How are you doing? I was absent last week. I had so much going on getting ready for my colonoscopy/endoscopy on Thursday. The prep for the colonoscopy was horrible, HORRIBLE!!!! I even started 4 hours earlier than the instructions indicated. My aide changed me every hour from 12pm-6am. I was physically and mentally exhausted. Thankfully I had an early appointment. Unfortunately, I knew I wasn’t cleaned out. A very easy indicator was that the stool…

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Rituxan Infusion in the Books

Rituxan Infusion in the Books

I am half way through my Rituxan infusion. Chilling out watching Ink Master. I was smart this morning. I kept my arms covered despite being slightly warm. I know, all too well, that my cold arms do not help when trying to start an IV. I overheat so easily so there is usually a fan blowing right next to me. I might not feel cold but my arms and hands are always cold to touch. I kept a sweatshirt on…

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MS Bike Fundraiser

MS Bike Fundraiser

Every year I put this on my blog. Every year he does this amazing fundraising event in my name. This is a MS fundraiser that I wouldn’t be able to participate in based on the level of my disability. I haven’t been able to ride a bike in many years. That is what is amazing about these fundraisers, most of the time the people participating don’t have MS. I thank everyone who donates. However, I truly thank the people out…

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Pincushion Arms and Infusion on Horizon

Pincushion Arms and Infusion on Horizon

I’m sneezing. My first cold of the year. I have been taking my oregano oil for a few days. It has probably helped but it hasn’t stopped the cold like it has in the past. I think things are just not affecting me the same since my whole pneumonia debacle. Oregano oil use to knock out anything as soon as I felt the twinge. Now I feel like it doesn’t do the trick. I’m not use to actually feeling run…

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Gastrocolic Reflux

Gastrocolic Reflux

I’m waiting out a F1 rain delay so I decided to write. Rain always makes a race so much more interesting. My favorite driver, Fernando Alonso, a veteran and oldest F1 racer loves the rain. He knows how to drive a F1 car in those weather conditions. He isn’t scared taking the corners at a high speed as some of the newer drivers still are tentative. Plus this is a night race in a street circuit. That means close walls….

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MultipleSclerosis.net Latest on MS Clinical Trial

MultipleSclerosis.net Latest on MS Clinical Trial

This article was from multiplesclerosis.net. I haven’t posted much on research lately. Probably because I am at a point where most drugs in the horizon won’t help. However, today Facebook has been showing ads for multiple sclerosis drugs that ARE NOT drugs approved for MS or covered by insurance. They are just ads from companies trying to target a market for the chronic disease. I don’t mind the ads when it’s nail gels or low carb keto snacks. By all…

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Waiting on Gastric Diagnosis

Waiting on Gastric Diagnosis

I have a new day time aide. It’s been a little rough with some of the aides I’ve been sent. I hate being that person that complains but some of these people were just useless. I can put up with a lot. If I feel unsafe with someone I usually can’t get through that. Some of these aids had no training. I knew if I stumbled during a transfer I was going down. It became very stressful each day. Each…

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What is multiple sclerosis?

What is multiple sclerosis?

I don’t know how many times I’ve talked to people that had the cure for multiple sclerosis. If it was just about diet and taking vitamins, I promise you, I would be doing that. People mean well. Unfortunately, they read one story and think it works the same way for everyone. If there was a universal cure we’d know. I think that diet and vitamin can make a difference in the early stages of multiple sclerosis. The healthier your body…

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Another Accomplishment

Another Accomplishment

Happy Friday. It’s been another rough week for me but I did have another major victory. I was able to get in the shower for the first time since the end of the December. I have a small shower with no bathtub. However, it isn’t flat to the floor. There is a small step that was difficult for me to navigate before I got sick. After the pneumonia, getting over that step was an obstacle I didn’t think I’d ever…

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