Side-Stepping Fate

This is the time of year I miss the cooler weather. The heat makes me a shut in. It hasn't quite happened yet because I am required by husband's law to get out and go to physical therapy for my back. but this is my last week of physical therapy. I'm not fixed. I'm marginally better. I still have really bad days and I'm not sure if when I stop going I will still have good days. We will just have to see I guess. Maybe when I stop and there isn't a lot of improvement they will figure out another option to try and help. I have had days where I can stand and do things, but then I overdo it and have bad days. It is really hard to not do things when I am here and they need to be done. The fire part is I'm still having the burning feeling. Once I woke up and it was like a hot flash, if a hot flash feels like your body is literally on fire. With real flames. Not just warm, not just 'whew get me a fan' but a "my skin is burning off please make it stop&q

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

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

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

If you take anything from this blog learn this one thing. MS is the MOST unpredictable thing you will ever experience in your life. You will have your lowest of lows for who knows how long and then you can wake up one day and feel better. For no other reason than the wind changed or the pressure changed or your hormones changed (I really think it is that sensitive. I have theories I would be willing to talk about with female friends but it might be a little weird with guys). So today is a better day. Last week was so BAD. Sunday we just had a horrible awful very bad day with lots of tears in this house, but today...I'm not so bad. I'm not perfect. I'm dizzy. I'm forgetful. I'm really forgetful BUT. I'm better. I can tell I'm better. I did some cleaning. I haven't just sat in the chair all morning. I'm working on potty training the boy since the weather is warmer. Getting a little too warm and muggy for me but I'm still trying to save money so t

I'm beginning this post on Friday. I'm not sure when I will get to publish the post but it is relevant to today so that is why I am telling what today is first. Yesterday I was sitting in my chair imagining a few things the boy and I would do today. Not crazy things. Not marathon-running type things. Just a simple trip to the store to buy vitamins for everyone and a trip to exchange some shoes I ordered online where I WAY overestimated his shoe size. Not too complicated. Two places. Not long lists. The weather even cooperated for us today. The problem is today my body decided it doesn't want me to do anything. I have never had such a crazy panic attack. At least this is my self-diagnosis. I'm sure if I went to the ER they would tell me it is either dehydration or anxiety so I'm staying home and drinking water. So far nothing has gotten worse and it isn't chest pain since first thing this morning. Since then it is really low (for me) blood pressure, high resting