It occurred to me yesterday that it is almost the 1 year anniversary of my doctor telling me over the phone that I have multiple sclerosis (MS). It was on March 31, 2023 and it was a shock. I just recently learned that March is MS Awareness Month, and this is MS Awareness Week.
MS is difficult for me to talk and blog about. I don’t know if it’s because the symptoms of the disease are invisible, meaning I look normal, but my body knows differently. Maybe it’s because this is a disappointment, considering I’ve already survived breast cancer. Maybe it’s because most people don’t know about the disease. Maybe it’s because I’m focused on healing and want to preserve my energy from explaining what is difficult to explain. Maybe it’s a combination of all the above.
Whatever the reason, March is the most appropriate time to share an update on my MS journey.
“You’re a very strong woman who’s been managing it all these years but then something BROKE.” Those were the words my MS neurologist said to me last week toward the end of our appointment, and my eyes tear up every time I replay it in my head.
For the past 12 months, I have been focused on treatment and recovery. I attacked this thing like I do with any challenge. I immersed myself with research and information. I coordinated and attended all my doctor appointments. I’ve prayed. I restructured my life a bit. I’ve moved forward.
For the past 12 months, I’ve seen these specialists: neurologist, pulmonolgist, urologist, neuro ophthalmologist, nutritionist, and oncologist. In addition to seeing my optometrist, primary care physician, and dentist. I most recently completed physical therapy in February and need to schedule another type of physical therapy in the near future.
I’ve been my own social worker coordinating care, submitting appropriate documents, calling my insurance to verify coverage, and asking the right questions.
Some successes are that in January, I completed my second infusion dose in one session. I completed 7 physical therapy sessions. My lungs are clear. My bladder is on her way to healing. My vision hasn’t changed much. Most importantly, my MS neurologist also told me in the visit last week, after she told me how strong I was, that I’ve been working hard and have changed the course of my illness to see positive results for the next 50 years.
I’ll take it.
In support of MS research and a cure, I’ll be participating in Walk MS and have started a fundraiser, which you can find here:
https://events.nationalmssociety.org/participant/433279
Please help support me in this cause. Any amount helps!