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Tag: diagnosed with MS

Occupational therapy in my home

Occupational therapy in my home

There’s been a lot going on this week and I’m not sure where to begin. After being traumatized this weekend, it was hard for me to even focus on everything that was happening, and a lot was happening. My new aide started on Monday, I got an OT evaluation to start that twice a week in the house, and Mikayla left. I’m also going for a urologist appointment on Friday to discuss the Botox in the bladder. I haven’t decided…

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Something good about insurance

Something good about insurance

I spoke with my case manager for my insurance today. Before Covid started, I had a really wonderful case manager. Every month she’d call and check in, as per her job description, but she always made me feel like she genuinely cared. She remembered things about me not necessarily related to my medical case. Then one day she was just gone. I didn’t know if Covid was the reason for the change, if she quit or left, I just had…

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Really good multiple sclerosis research news

Really good multiple sclerosis research news

This is the best news article I’ve come along in a long time. It was titled: ‘Holy Grail’ MS discovery could prevent disability using diabetes drug For the first time in ages this talks about stopping the disability not reducing relapses. https://www.sciencefocus.com/news/holy-grail-ms-discovery-could-prevent-disability-using-diabetes-drug/ In MS, the protective coating surrounding nerves known as myelin is damaged causing them to become less energy efficient which makes them vulnerable to further damage and causes disability over time, the MS Society said. < p style=”box-sizing: inherit; margin:…

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Beware-Throwing a pity party

Beware-Throwing a pity party

I work so hard!!! I workout everyday. I try to incorporate weights to build my muscles and my strength. I try to eat right. I take a shitload of pills to offset all my MS symptoms. I spend more money than I can afford on good vitamins that I take daily. For what??? It gets hot and my body forgets it has any muscles. I suffer fatigue and I can’t do anything on my own. I once again ended up…

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Loving the MS Gym

Loving the MS Gym

Good morning. It is a Grey Saturday morning here. Actually it’s a white Saturday morning.  If you look closely you can see the water. It’s 8:00 am and I’ve already worked out. I can’t say enough good things about the MS gym. http://www.themsgym.com/. I just completed week 2 and I already have seen a slight improvement. no one else would notice this improvement, it is extremely minute. This is just one of the things that I noticed from doing…

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New area of complete numbness

New area of complete numbness

I was sitting with both of my dogs yesterday, all cuddling on my chair. My Zoey decided to do her typical puppy love and kiss my face. I don’t know if things changed or I just haven’t realized, but where she was kissing, licking, I felt nothing. I felt the pressure of her tongue but I couldn’t feel her tongue. I couldn’t feel the wetness of the kiss. All I felt was that pressure and nothing else. Zoey has a…

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Gradual disease progression

Gradual disease progression

How are you feeling? Seems that this is always the question asked by everyone that knows me. Today, I asked myself. I have written many blogs about lack of sleep Sleep deprived, many about accidents A horrible and humbling outing, and even some on actual feeling How are you feeling? The truth about Parethesia, but it’s been a while since I actually said how I was feeling. I’ve had multiple sclerosis for 22 years now. My disease modifying therapy is…

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Summer heat hibernation and my own multiple sclerosis realization

Summer heat hibernation and my own multiple sclerosis realization

The quarantine is starting to lift yet this is the weather I start my hibernation. It’s starting to warm up and that means trouble for me and multiple sclerosis. Not just me, many of us. Between 60% and 80% of people with MS find that heat can cause their symptoms to worsen. This might involve a build up of fatigue, blurred vision, loss of balance or a worsening of cognitive symptoms such as concentration or memory. https://www.mstrust.org.uk/a-z/temperaturesensitivity I missed all my good months to…

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Secondary Progressive Multiple Sclerosis

Secondary Progressive Multiple Sclerosis

For my wheelchair evaluation, I’m going out…my wheelchair evaluation my neurologist needed to submit a letter of need. Due to the coronavirus, we did this via teleconference the second week of April. He’s been my neurologist for 22 years. He has files upon files upon files on May. We laugh, actually, at how many times my files have been thinned and moved to storage. My file still always remain as thick as medical encyclopedia. I explain this so you know…

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Hot, sweaty, cold and warm

Hot, sweaty, cold and warm

I’ve had so many blogs about this topic. Regulating my body temperature is not going well these days. It can be very frustrating. The sweating happens a lot after i eat. It is because my food is hot. The hot food causes my body temperature to rise and then I start sweating. Really makes no sense. Most normal people eat a hot meal and don’t have any issues. Not me, I eat, I get overheated. WTF!!! It happens all the…

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