It’s crazy to think that I just wrapped up my fourth year with multiple sclerosis (MS). When I look back on these past four years, I feel pretty blessed. I know having an incurable disease isn’t so blessed, but through this discovery, I have met amazing people, taken control of my health, and spent time volunteering with an amazing organization. I hope I have also helped some of you along the way during my healthy, non-toxic and self-preservation journey.
In reflecting what has happened this year, there are a few things that I have successfully achieved in terms of managing my MS and contributing to the MS community that I am very proud of, and here they are:
- Being able to continue to take Tecfidera. As most of you all know from previous posts, I began taking Tecfidera as my disease modifying medication to help lessen the progression of MS. Late in 2020, Tecfidera lost its patent, which meant that generic brands could copy the medication and mass produce it. This made my insurance company in the beginning of 2021 stop paying for the name brand Tecfidera. However, with the help of my neurologist, nurse coordinator, and UCLA in general, we were able to successful appeal this decision after three failed appeals to keep me on Tecfidera as my medication regimen.
- Reversing some of my MS damage. When I was first diagnosed, my neurologist told me to continue to exercise and use small weights daily. Continuing to move, stretch and exercise your muscles helps cause your nervous system act as properly as possible. Obviously, in MS patients, the nervous system is damaged in some way or another. It could be that your reactions or slower or you don’t move as quickly, but through exercise and using small weights, you can reverse some of that damage, and I did just that this year! When I was examined at my last check up, my neurologist told me I performed better than the last time. That means I walked straighter, had better reflexes, could move my eyes, fingers and toes faster, and could focus better. Our bodies and minds are truly so powder, and it is amazing to see what you can do if you set our mind to it.
- Being a top raiser for the MS Society. It has been hard to be motivated and raise money during these remote times, but I managed to still continue to raise money for the MS Society. In fact, I received a t-shirt from the MS Society stating that I was a top raiser this past year. Additionally, the Emerging Leaders Board of the MS Society, that I am a part of, also raised tens of thousands of dollars this past year through our remote Summer Soiree and smaller fundraisers throughout the year. I am so excited for my first in person Walk MS this April through, so that I can continue to raise money for the MS Society.
So, I would say in terms of managing my MS and hopefully, helping others, I achieved quite a bit. I am hoping this year will be even more successful, and maybe, we will even find a cure.
Here’s to being well preserved.
Always,
Taylor
