This week is MS Awareness Week, although lately it feels like every week is MS Awareness Week in our house. I don’t know if he’s overheard some of our conversations about me getting the COVID vaccine, if he’s just become more aware and empathetic every day, or both, but TJ has been asking a lot of questions about my symptoms and has been very attentive to every little move I make. This many years into my diagnosis, we have been through a lot of the curveballs that MS can throw – mobility challenges, recurrent infections, vision symptoms, neuropathy and pain, and chronic depleting fatigue to name a few.
This MS Awareness Week also marks 6 months on my new treatment. While I wasn’t exactly thrilled to be changing medications for the fifth time in eleven years, especially to one as overwhelming and unnerving as Mavenclad, but it has really been a game changer for me. My symptoms are steady, my days are predictable, and my mood is better.
One of the things I struggled with while I was on previous treatment regimens was the seemingly constant reminders that I’m “sick” on the days that I needed to take my medication, go for an infusion, or do an injection. Because of the way my new medication is administered, I don’t have to worry about that. I have medication in my system for a period of time and then the effects of that medication last for almost a year. This has been huge for me, and for my role as Mama. One of the absolute hardest parts of living with MS for me is telling my boys that I don’t feel well, or that I have to go to the doctor, or that I have to take my medicine. By not having to say that as often, I feel like I’m able to be more present with my boys without worrying about how I’m going to have to explain the next day or the inevitable next step to them.
When TJ does have questions, we are still reading Some Days We… and answering every question as best we can. I know his questions will continue to come, and Jacob’s will start soon, too. I’m so grateful that the National MS Society has resources to normalize these conversations and guide us all through them. I’m also beyond grateful to have Tim’s supportive and loving partnership through every step. I know this can’t be easy for him either, and I will always be thankful for the example he sets for our boys.
Looking forward, I’ll do my second round of Mavenclad this summer and then hopefully will be able to take a break from treatment for some time because of the way this medication works in the long-term. I’ll continue to see all of my doctors for my routine check-ups and manage any acute symptoms or flare-ups that come up along the way, and I’m hoping to be able to start physical therapy again soon. This journey is an always-evolving one and thinking too far ahead isn’t really possible, but I feel really good about where things are right now.
Thank you, as always, for being here.
xo,
Stephanie
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