I hope everyone had a great Easter!! We are finally getting sunny warmer weather here in Northern NJ.
I try not to speak about my MS when I post, but this is such excitement for me I thought I would share what is going on in my life. Maybe this will even help someone else out there suffering from MS or a similar illness.
The last time I went to my neurologist John and I knew we were going to be speaking to him about a new drug that has been approved by the FDA for remitting/relapsing MS. The drug has been out for a while but the doctor wanted me to wait a bit. He wanted to address it in the spring and we were going to make some decisions and I read literature about the new drug through the winter that he had given to us. My doctor is a well-known doctor in the world of MS and this is his field and nothing else.
I have been on a drug name Betaseron for the last 20 years. It is a subcutaneous injectable drug for remitting/relapsing MS. When this drug first came out the only way I was able to get started was through a lottery. They didn’t have a lot available for all of the patients that needed it and my number got chosen relatively quick. Being young and very scared I decided that I had to take this drug so I started the injections. It is one of the more powerful injectables out there. It does come with drawbacks, flu-like symptoms and when I say symptoms I’m referring to low grade fever, chills, aches, weakness and feeling tired.
For me, in the beginning these were very prevalent not to mention I had to inject myself every other day, I HATE needles and I mean HATE!!! Somehow at the age of 26 I mustered up the courage to do the injections.
My new treatment is Tecfidera and is in pill form. I take this two times a day and there is side effects I have to get through the first month and then they dissipate. I am in my first week and things have been good. When I up to the full dosage is when things may or may not be a problem. I am trying to be positive about the side affects, wish me luck.
In other news, which is HUGE, the doctor suggested I get fitted for a fiberglass brace and he said it would still allow me to wear my skinny jeans. I know; what is the big deal, right, but for me it is a big deal. I feel I have had to give up many things with MS, I don’t want to give up another thing that is important.
Well look what John and I picked up today. You put in the shoe and then put your foot in and strap it around the calf.
The result is astonishing for me. Many know I walk with a cane but what they don’t realize is with that comes limitations. With drop foot on my right leg I tend to slide my leg and have trouble lifting my foot when walking which comes with the danger of stumbling, falling and crossing thresholds is a big problem with tripping. Having this issue with my right leg saps 25% of my energy each day. When Audrey, who we are staying with as many of you know, and I went for the first time to try this brace we were astounded with the difference this was making, we cried. I knew John had to come with me to pick this up because I needed him to see how much things were going to change for me and for US!!
When everyone was wearing cute sneakers and sandals in the summer I was wearing boots to give my ankle stability. Look at what I bought today, cute little sneakers in different colors.
The Orthopedic guy has one pair of my boots he is trying to stretch to fit my brace so I can wear them next fall and winter. He explained what I need to look for with the boots. Boots have become my security blanket so to speak so he totally understands why I want to have them and I want to be able to still wear them, HUGE boot girl.
This means, for me, I can go back to the mall, craft fairs and the BIG news is walk with my John and Peanut and Reeses in our new neighborhood. I may not be able to do these things all day since I still may tire out but the idea to be able to do the things I LOVE again is pure HAPPINESS!!