3 YEAR UPDATE
My 3rd MS diagnose-aversary looks and feels very different than the others.
It has been another year living with, learning from, and adapting to a life with MS. A year of more questions and newness. A year of no Ocrevus treatments. A year of countless dr. appointments. Accept this time those appointments weren’t focused on my brain.
For the last 3 years, My MSed Up Journey has been stable, predictable, and beautifully managed. I am blessed that it continues to be that way… and now I am pregnant. MS+Pregnancy make for a whole new journey to navigate.
April 2022, I had my bi-annual Ocrevus infusion treatment. It went well, the usual process, side effects and recovery. My scans were clear and my MS was very well managed under the care of Dr. Hu. I had a quick check in with my care team, and was told we could “start trying for a baby” by July 2022. We were “warned” it could take time, and we should be patient. We’d have to concieve by early September 2022, otherwise we’d have to wait 4 months to administer my next infusion cycle. It would be something we’d manage one month at a time to reduce risks and align with my next treatments if needed, but overall… we had a green light and our wedding was just a few months away.
June 2022, we got married… and by July, we got pregnant. Of course we didn’t know it yet, and we were not trying to put stress / pressure on it. We knew it could take time. I just never dreamed it’d be “that fast”. So imagine my gut reaction when some of the pregnancy symptoms were similar to MS relapse symptoms. I didn’t even think to question if it was a baby giving me dizziness, exhaustion, brain fog, nausea, and extreme fatigue. I assumed it was an MS relapse.
It was mid-August and I had been struggling for a few weeks to “keep up” with life. I made an appointment with my MS Neurologist to get checked out. I genuinely thought it was an MS relapse. So my appointment the next Wednesday would help me figure out what was going on… but the Monday before, my mom said almost on a whim with her loving momma tone “huh, just sounds like you’re pregnant”… and while I denied it to her and blew it off with a laugh… a lightbulb went off in my head.
I knew what it felt like to have a relapse, but what if… what if it wasn’t a relapse, what if it was a baby…
Almost immediately after hanging up the phone, I marched down to CVS to get a test, but I did it just to prove my mom and myself wrong. I didn’t want it to be an MS relapse, but I never imagined it was a BABY. So imagine my surprise when the test was positive… and so was the second… and so was the third. EYES WIDE. SHEER SHOCK. SURPRISE!!!!!
By my Wednesday appointment, I was so excited to tell my Dr. She had known my goals and supported our dreams, and helped me get my MS stable. Telling her was like telling a best friend. It was a moment of pure joy, when she walked in and asked “how are you?”, and I said, “well, I think I know what the “issue is”… The joy on her face, the hugs of congratulations, the celebration of life and all we’d been working towards… it was a RUSH. We’d chosen a treatment and set a plan and supported the goals and we had done it. Almost seamlessly and without hesitation, we’d done what we set out to do. We’d put my MS in remission, we’d gotten my lifestyle and brain stabilized, we’d preserved the opportunity to have a family.
Pregnancy & MS aren’t immediately “high-risk” but I’d had complications from fibroid tumors in my teens so there were elevated risks in combination with my MS, so with one call and a few clicks, my MS care team handed me over to Maternal Fetal Medicine (MFM) and the new journey began.
My MS’ed up Journey would be about maintaining, not treating. We aligned on a schedule to meet, but it would be at least 12 - 18 months before I’d have to have another MS treatment. Pregnancy and MS have a pretty harmonious and stabilizing balance. Most women go into remission when pregnant + an auto-immune disease. MS & pregnancy could actually be smooth & simple. For the first time in years, I didn’t have anything reminding me of my Multiple Sclerosis. The leg pain / tingling, the ringing in the ears, the MS fatigue… vanished. The pregnancy would soon show me what it was all about, but my MS was on the sidelines for now.
With my MS “on hold”, now the focus was the pregnancy. Within a week of finding out we were expecting I was experiencing all of the joys and then some. Morning (noon & night) sickness, food aversions, and exhaustion. Except it kept getting worse, and worse, and worse. We had a few ER visits, and we did our best to enjoy life, even if it was covered in throw up most days.
I know every pregnancy is hard, and every one has their own challenges. Trust me when I say, I’m not trying to complain… but the almost constant nausea and vomiting was at times more than I could handle. I have friends & family that have had the same experience, and it has truly been something you have to experience to understand. Hyper-Emesis isn’t necessarily a “complication” , and it’s completely unrelated to MS, but it sure made things harder and more defeating and frustrating than it needed to be (or than I wanted it to be).
Shout out to my incredible husband that held me and comforted me and took me to the hospital/appointments and cleaned me up time after time without hesitation.
So here I am 35+ weeks pregnant, with a planned c-section scheduled (due to the issues from when I was in my teens) and ready for the next phase of the journey & all it’s challenges, joy, and newness. I’ve been nauseous and vomiting for about 25 of the last 35 weeks so I am ready for that part to be behind me. There are still a lot of unknowns ahead. MS treatments post-partum will be something I figure out with my care team, in time. The c-section recovery will be something I heal from like any other new mommy heals, and I’ll do it with my incredible support system and care team.
I don’t blog much anymore. I may have taken the last year for granted in terms of My MSed Up Journey. Or maybe I was just enjoying the view for once, rather than worrying about the next stop/turn/thing on the journey. Who knows. I wish I’d been able to dedicate more time and energy to the MS community / cure / blog, but I also admit, I didn’t have much to spare.
I am incredibly blessed to be able to live my life un-interrupted by my MS these days. I am looking forward to the next phase of life and learning how it all balances out. Baby girl Falletta will no doubt be a new crazy beautiful messed up journey, unlike ay other I’ve ever experienced.
After 3 years with MS, and now a baby due any day, cheers to the next chapter of My MSed Up Journey and the Motherhood journey that is just getting started.
Charlotte Raejole Falletta