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Tag: living with multiple sclerosis

Spirit Junkie Masterclass 2

Spirit Junkie Masterclass 2

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I did something I never do, I put physical therapy with occupational therapy. This is the fatigue kind of exhausted where everything in my body is just done. I did it because I had to cancel on Friday for good reasons. I’m going away. First I’m going to parents weekend and seeing my daughter in Albany. Then I’m going to spirit junkie master class 2. I did the first class over a year ago in NYC https://multipleexperiences.org/2017/05/30/mandatory-sisters-to-voluntary-best-friends/. I wrote this…

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Mahjong fun with friends and good for the brain

Mahjong fun with friends and good for the brain

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What fun yesterday was. My MS friends and I joined a beginners class to learn mahjong. I must admit I did have a lesson before with my mom and my girlfriends which was a lot of fun but it was difficult organizing everyone to get together again. I’ve been wanting to learn mahjong for a long time. I originally brought the idea up to my MS girls because we are around during the day and I thought it would be…

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An early birthday present

An early birthday present

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I bought myself a gift, another Fitbit. This one is the flex2 which can track swimming. One can argue the fact that tracking steps and activity for someone who has multiple sclerosis is kind of pointless, and it may be true but I wanted to see. I am curious on a few points: sleeping, activity and steps. I used to always track how well I slept through my Fitbit. It shows how much you were restless and how much you…

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Should I take Ocrevus?

Should I take Ocrevus?

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If your doctor has suggested Ocrevus you are certainly moving up the ladder of disease modifying drugs for multiple sclerosis. With each of the IV drugs especially come side effect risks. Ocrevus is no exception. The most serious they show is: Risk of cancers (malignancies) including breast cancer. Follow your healthcare provider’s instructions about standard screening guidelines for breast cancer. That’s a pretty serious risk to consider. They also talk about PML Progressive Multifocal Leukoencephalopathy. This is the brain infection caused…

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An elusive molecule that sparks Multiple Sclerosis article from Science Magazine

An elusive molecule that sparks Multiple Sclerosis article from Science Magazine

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A very interesting article found on the web from Science Magazine written by Mitch Leslie. This article has been copied below. https://www.sciencemag.org/news/2018/10/elusive-molecule-sparks-multiple-sclerosis-may-have-been-found Our immune cells normally pounce on intruding bacteria and viruses. But in multiple sclerosis (MS), immune cells target the nervous system instead. Now, researchers may have pinpointed a long-sought molecule called a self-antigen that provokes these attacks, pointing a way toward potential new treatments. “The work is monumental, and it’s tantalizing,” says neuroimmunologist Hartmut Wekerle of the Max…

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Tired

Tired

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Not fatigued, yet, but I have physical therapy so give it time. The weather is so wacky and I think that’s why. One day it’s cold, rainy 65 degrees and I’m wearing a sweatshirt. The next day it’s 75 and humid and I’m in shorts. My hair is frizzy again in the middle of October. Amazingly I haven’t had migraines. An absolute blessing. I haven’t had one in at least a month (knock on wood). I’d think with these wacky…

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Ocrevus colds prevention tips and natural oils

Ocrevus colds prevention tips and natural oils

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The sneezing started last night. I am starting my regiment of Doterra Oregano and OnGuard today. Hopefully I could knock it out before it starts. I take Ocrevus so common colds can take longer to leave my system but since I started with the natural oils I’ve been very fortunate not to have that issue. I wrote a lot of information about the oils in this post https://multipleexperiences.org/2018/09/15/schools-back-reminder-about-oils-doterra/ or check out my page https://multipleexperiences.org/doterra-oils/. The common cold could put you…

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Accepting the stages of MS

Accepting the stages of MS

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I’ve been looking to get funding for a handicap vehicle for the past few months. It hasn’t gone as well as i was hoping. On top of this my own car is a lease which isn’t over until July 2019. My mother kind of yelled at me for getting ideas in my head prematurely. She isn’t wrong but what I needed to explain to my mom that it wasn’t so much the idea of the handicap vehicle it was the…

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Biking for a World Free MS

Biking for a World Free MS

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https://www.facebook.com/donate/249027742420824/ Why We Want to Create a World Free of MS 9! years ago, when I said I wanted to ride 30 Miles for an MS Bikeathon, my step-but-real sister Jamie said “I can barely walk 300 feet – why do they do these events that people with MS could never do?” I said “Maybe it’s because we hope someday you’ll be able to.” I have done this event for 9 years now. Life is harder for Jamie, but I’m…

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Season change and MS symptoms

Season change and MS symptoms

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Does the change of seasons affect your MS symptoms? I know that the actual seasons affect symptoms like the heat of summer or the cold of winter but I mean the transition between the seasons. I’ve had a tough time with my walking lately and with fatigue. My physical therapist says season change. I found this article online http://tamingmultiplesclerosis.com/multiplesclerosis-seasonchangesarticle.html. Usually I feel effects of season changes maybe from winter to spring. It’s unusual for me to feel this way from…

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