It’s here…the day that I am finally going to start taking Tecfidea. As I explained in the post about my most recent MRI, it has been three years since I was on a disease modifying drug (DMD) and although I am excited about the prospect slowing future progression, I had some trepidation. Just as promised, I took the week to think, research, fall apart a little bit, and now I think I am ready. I was hoping to start it on Sunday, but the ONE thing that my doctor warned me about was to make sure and EAT before taking this medicine. Unfortunately one of the side-effects of having really bad pain days…I don’t eat. Yea, I know…woe is me…but for those out there that struggle with weight on the other side of the spectrum (losing rather than gaining) PLEASE don’t be a hater….I really hate HATERS. I have had my share of years carrying around the extra baggage that mommy-hood graciously leaves behind. I actually DID manage to shed MOST of that weight before I even got MS, and was happy to be walking around at “almost” my pre-baby size (although my body would certainly NEVER return to it’s “normal” shape, things hang and sag WAY more than they used to.) But then MS happened…
As the symptoms started, and the pain and “altered sensations” grew, my weight began to diminish, and it WASN’T something I WANTED, or was striving to accomplish. It was NOT my intention to waste away, it’s just that when the pain is there, all the time; not relenting at all, no matter what I try, EATING is the last thing I want to do. I got to a point where I had to consciously eat; counting up grams of protein and other nutritional details to ensure that I at least had ENOUGH to be ok. Having ALWAYS been on “the other team”, struggling to NOT gain weight, or to LOSE extra pounds, this has been a HUGE change for me. I LOVED food, was like all the other mommies I knew, grabbing bits and pieces and “left-overs” of whatever “gourmet” kids meal I had prepared (mac n cheese, fish sticks, hot dogs.) But not so much anymore.
It has been a learning experience. I NEVER knew that there are so many mean people out there, waiting and willing to comment on your weight – just this time, rather than being TOO big, I am now TOO small. WTF, REALLY? It is NOT my goal to be some “skinny-ass-bitch” (as one woman so politely described me, after a few too many cocktails.) Hell, I MIGHT be skinny at this point in my life, but I KNOW that I am NOT and have NEVER been a bitch. I just don’t have it in me. I even had one “mommy dearest” respond to my explanation that it is NOT intentional, that it is because of the disease and the pain, with
“Hhhmmm, maybe I should get MS.”
Now there is a woman that knows what is important in life!
So, I had to get through the weekend, through this last bought with pain and sadness, and now I am ready and raring to go. Having gotten all three kids off to school, I sat down and had myself a “solid” breakfast – consisting of Shawn’s mother’s potato salad, left over chicken stir fry and some delicious cantaloupe (exciting to read what is in my stomach, huh?) I have taken my first dose of the Tecfidera. Other than having to eat, I was warned of possibly having some flushing? Not sure what that is exactly, but maybe it will give me that “sun-kissed glow” I love to achieve in the summer months?
I will keep you posted, and let you know how it goes. I have to admit, I am NOT super excited about putting another drug into the mix. The fact that I have a “granny box” (see above) with ALL of my daily pills sorted and counted out, that goes EVERYWHERE with me, isn’t something that I enjoy. I DO think that there is sound reasoning to wanting to do the best I can to limit the long-term effects of the MS on my body and my quality of life. I don’t know if this decision might help me avoid ever having to use the cane or Segway again (that does not seem likely) or maybe help me avoid ever needing a wheelchair. I JUST DON’T KNOW. If I do manage to ward off some of that in the future, was it because of the drug and will I owe a huge thank-you to Biogen, or is it just the path the disease has chosen to take me on. These are the super annoying and relentless thoughts that bounce around in my mind on a pretty regular basis.