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Showing posts from March, 2018

Updates and a favor

Favor first. My niece is raising money for Walk MS in Portland where she lives. Walk MS raises money through the National MS Society for drug research as well as research to find the cause of MS in hopes of finding a way to cure it some day. Her walk is April 7th and she has been baking treats to sell in order to raise money. I don't have a team because we don't have a walk locally for me anymore. The year we did my team blew it out of the park raising money and I would love to be able to help her raise so much more money than she ever thought she could. Thanks to fundraisers like this there was a recent breakthrough in medication for  early secondary progressive MS . Also thanks to fundraisers like this the drug companies are able to offer a copay assistance program for medications like mine. Since I have insurance paying for a portion of the cost of my prescription monthly I automatically qualify for copay assistance. The copay assistance program is not based on income - the

It is like a tiny chemo hug in capsule form

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My day today was eventful. The medicine I take to try and prevent relapse is Gilenya. It works for me. It doesn't work for everyone but I have been on it before and my previous neurologist was really happy with the results so I didn't really consider any other options this time around. I didn't have any major side effects and Novartis is really great about payment assistance so it was my top pick. Today was D-day. First, let me start by saying I don't like strangers in my home. I we have a small place with minimal furniture, and because I cannot get around well and we actually live here it is never as clean as I would like. That said, JP was amazing last weekend to check off my list of to-dos to help my anxiety and try and make me feel more at ease with having company in the house. Also, I accepted the fact that I'm not trying to impress these people, nor am I likely to ever see them again. So there was that. Secondly, let me explain in super simple terms what

No one sees what is really happening

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I write this blog for family and friends to know how I am really doing instead of the easy 'I'm fine' answer. I also write this blog to raise awareness of Multiple Sclerosis and to help anyone who might be confused or lost or feel alone out there. You aren't alone. Here is a good resource if you think you or someone you know might have MS and aren't really sure. The best way to be sure is testing. There are two specific tests they can do, one checks for lesions on your brain as well as in your spinal column and the other is a lumbar puncture. I forget what it checks for (I'm sure you could find that somewhere online) but you can't really argue with that one. Doctors can make excuses for lesions but if your ____ number is high then that is commitment right there. A word to the wise - if you have the lumbar puncture drink a TON of red bull. I mean a LOT. Chug the stuff. Otherwise you will be in the worst pain in your life and have to go back to the hospital