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Tag: daily life with ms

7 Perfect Gift Ideas for a Loved One Living with MS

7 Perfect Gift Ideas for a Loved One Living with MS

I saw this article on healthline https://www.healthline.com/health/multiple-sclerosis-ms-gift-guide This list was put together by a MS blogger and her blogger community of items they felt were great for holiday gift giving. The article goes into full details of each item and where you can find them. It even explains why each item is a good gift. The holiday gift for a person with MS: Cooling clothing and gear Help around the house Home Entertainment Productivity or adaptive technology Wear for your…

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Disability Van Shopping

Disability Van Shopping

You think this would be easy, but it really isn’t. I have seen now a place the converts Honda Pilots which I love but they aren’t located in New York. I even found handicap accessible trucks That’s crazy. Look at that!!! Then I found smaller cars with hatchbacks that would have been perfect for me before this but who knew. There are tons of cars out there plus tons of adaptive equipment that can be put into a vehicle to…

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MS Focus on Research for November

MS Focus on Research for November

This month they had a few interesting articles on new MS research I thought I’d enclose. https://msfocus.org/About-Us/MSF-News-Articles/167 A new study shows an overlooked source may be able to replace lost nerve insulation and provide a new way to treat multiple sclerosis. The discovery of mature myelin-producing cells’ capacity for repair opens new opportunities to slow or reverse the disease. That may call for new therapeutic approaches that rally the oligodendrocytes to reach out with new lifelines to damaged myelin sheaths….

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My boo boo feet

My boo boo feet

It happened again. I got blisters on my pinky toes and wearing shoes became quite an issue. It started about a month ago where my shoes started rubbing and I knew it was going to be a problem. Guess what, it was. I’ve been wearing the same sneakers for a long time never had a problem and all of a sudden they’ve become tight. The truth is I even know why. I didn’t take my water pill for a couple…

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The exhaustion equation

The exhaustion equation

Doesn’t take much to exhaust someone with multiple sclerosis. For me it was being out late two nights in a row. I’m paying the price now. Just exhausted. It’s unfortunate that the body can’t handle the simplest of activities. I went out for dinner the first night. Sitting with my friend chit chatting for hours. Far from a strenuous activity. Last night was hair night. Mom and my six week ritual of spending an entire evening in the hair salon…

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Accepting this stage of my multiple sclerosis

Accepting this stage of my multiple sclerosis

I had a good weekend. I got my 6 hour online drivers insurance reduction course completed on Saturday. Had a really nice birthday brunch with my friend yesterday. Even consumed too many Bloody Mary and was slightly drunk. I managed to not only have zero falls this weekend, I also had zero bladder accidents. I stayed up past 9pm Friday and Saturday night and still got up my normal times in the morning. I think it is safe to say…

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Overwhelmed with gratitude

Overwhelmed with gratitude

I’ve shared numerous times how I started a Go Fund Me for help getting a handicap van. I had some donations but it wasn’t moving most days. Since my birthday is coming up tomorrow I got something from Facebook about starting a fundraiser, so I did. I am so overwhelmed by the people that have donated to my fund. People I went to high school with, college, my family, my sorority sisters, my work friends over the years and friends…

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Getting back into routine

Getting back into routine

It’s been a while, seems like months, but it’s only been a few weeks. I am finally getting back into my weekly routine. I’ve said this many times in my blogs, I need the stability of the routine. It helps me function and cope in each given week. When I’m out of routine I feel a little lost. My MS may even act up and become cumbersome. Might be part of the reason for my lethargic ways these last few…

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Trying to get funding for a disability van

Trying to get funding for a disability van

I have to admit, I never expected the handicap vehicle to be quite so much money. I’m glad at least when I started this journey I did start at the dealership first. I have a foundation from multiple sclerosis that is helping me but they certainly didn’t have enough funds for the entire van, or anywhere near it. The multiple sclerosis foundation only helps with the purchase of the conversion and they certainly don’t cover the full cost. I’ve done…

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Rituxan instead of Ocrevus

Rituxan instead of Ocrevus

Going to see my neurologist, on my mind was questions of whether to stay on Ocrevus. I felt if I was still declining so much why be on a drug that can come with some serious side effects. Was the pros still out weighing the cons. I had two other drugs in mind Siponimod and Ibudilast. Both drugs are coming out for secondary progressive. My neuro shot down Siponimod because I was on Gilyenia and it is very similar to…

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