Back with a vengeance

When I first shared around this time last year I wasn’t entirely transparent about what the one major factor of deciding to try an MS medication was. More than anything I want to be a mom. Although if you look back at the It’s Time post you might notice some subtle hints. My neurologist encouraged me to try a medication over the years but I was always hesitant, until I knew for sure we wanted to try to have a baby. Up until even when I was diagnosed in 2012 women with MS were often told to avoid having children all together and if they did have them they had very few options for mitigating the relapses that can often come on with a vengeance after giving birth. We have come so far because of such incredible research. For many women MS calms down almost completely during pregnancy, but is quick to remind them it’s still there when no longer pregnant. Breast feeding is also thought to offer some protection against relapse. You can imagine then how it felt when a new MS medication came out that you could safely try to get pregnant after taking, and you can safely breast feed on. Women with MS went from being told you probably shouldn’t have kids to now having options to mitigate the major risks. The more stable you are when you get pregnant also mitigates your risk of severe relapse. To say this is life changing doesn’t even begin to describe it. Even with all the extra stress and hormones that come with IVF, between the medication and continuing with focus on exercise I felt incredibly stable. I was due for my next dose right before we did our first embryo transfer but was allowed to proceed with the transfer instead. We felt so beyond lucky that she stuck. Then we had a new plan next dose 2 weeks after birth, which would have been early December.

Unfortunately life, especially mine, often doesn’t care about plans. Within the span of three weeks I went from excitement to complete devastation. But devastation that came with a lot of other consequences many don’t realize. Once I gave birth MS would be back. And while desperate to have my breast milk stop it was keeping me a bit safer. As soon as it started going down back came the tingling, the burning legs, back came the restless legs, the fatigue and the fear of what could be much worse. I was optimistic because I was stable going in but either way I knew getting a next dose in would be important.

While completely devastated and trying to recover from giving birth and all the paper work and steps that come with losing a baby after 20 weeks I had to be phoning and emailing with my health insurance begging them to approve coverage that they previously denied the year before because I had not “failed” on a less effective drug that have basically all been deemed unsafe to try to have a baby while taking. We had secured previously for my first dose through a program and that same program was willing to bridge coverage until I was approved for some, but it would be an extra set of benefits on top of the “enhanced” coverage I pay a high premium for at work. At the 11th hour my benefits approved it and I got the coverage for my infusion!! This almost never happens and you better bet I will be focusing more of my volunteer work as a advocate for those living with MS to ensure they never have to go through something like this. While going through logistics with nurses, with pharmacists and infusion clinics leading up to today I was asked at one point by someone who had not closely read my file if I was bringing my baby to the infusion appointment. I have cried my eyes out over the past couple days as a result. Happy tears from being so grateful to receive coverage and broken tears for the baby that now only can come with me in my heart. If you look closely around my neck you can see her.