There's a reason I've been quiet

I’ve been mentally writing this blog post in my head, and honestly debated sharing it at all. There are parts of my life that I am happy to share as an open book to educate and advocate for others, and there are parts of my life that still feel too precious and vulnerable to talk about openly. Travis and I will be ringing in the new year by bringing home a baby, which we have affectionately nicknamed “the biscuit”. We’re due January 13th. You know how much we love lucky number 13—we got married on a Friday the 13th. We are excited, nervous, and so grateful. Part of why we wanted to wait to share this is that we had more trouble than we anticipated finding an OB willing to work with an MG patient. After being scheduled with 4 different OBs (1 regular, 2 high risk, not to mention the NP appointments as well) and being dropped by the first 3, we finally are being seen by a high-risk OB who is comfortable taking care of our pregnancy with compassion and a willingness to collaborate with me as a patient. Being someone who has been vocal about disability and illness, I’ve opened myself up to commentary and criticism for my life choices and what I choose to share or not to share about my personal life online. There are a lot of questions that come with being sick and starting a family. I’ll come back to that in a minute.

And there’s also a lot of heartache surrounding family in the chronic illness community as well. Travis knew before we ever talked about marriage that building a life with me would look different from the status quo. I basically told him before we even started dating that he needed to know what he was in for and that if he wasn’t okay with it there was no chance of us working out as a couple (sorry for the bluntness, Trav). MG impacts every single part of my life. It doesn’t own me or define me, but it impacts our finances, our social life, our marriage, our careers, our hopes and goals for the future—it’s not something we can compartmentalize and ignore.

Having a family has always been something I’ve wanted, but never knew if it would be a reality. When I came out of remission in 2010, I remember asking my mom if she thought I’d ever get to be a mom. I knew my symptoms coming back in the way they did meant that I’d need more aggressive treatments than I had tried before. I knew that if I ever did get married, I would need clearance from everyone in my medical team and be well-managed on a treatment plan that is not pregnancy contraindicated to even consider going off multiple forms of birth control. At that point, I had no idea if there would ever be a life-partner for me who would be able to handle all that MG brings to the table, let alone grow a family together.

In 2011 when I started immune suppression drugs, I had to agree not to have children while on the medication. I knew I was signing up for at least 5 years on the medication, and that there was no guarantee that I’d ever come off it. I was on it when we got married and only stopped taking it in mid-2016 when it stopped controlling my symptoms and started causing secondary issues. At that point, we had been married for 3 years and we were already getting the well-meaning yet still hurtful questions about when we would “finally” start a family. I had no idea if we’d ever get clearance from my doctors to start trying, and it felt so isolating when I let that external pressure of joining the club of motherhood get to me. I tried not to let it bother me, but it was emotionally draining. There were seasons where I dreaded pregnancy announcements. They were reminders of what I wanted, but couldn’t have because I was not in control of my body.

I feel a need to include that part of my story with this news because I know how difficult pregnancy announcements can be in the chronic illness community. I also know it’s also been so helpful for me to know a few young MG patients who have had successful pregnancies after diagnosis. Their friendship and support have meant the world to me. So I do want to share some bits about MG and pregnancy to help others who are left with questions and heartache as well.

Back to the part about opening myself up to commentary and criticism… I figured answering some of these questions and sharing what the first trimester was like right off the bat would be helpful not just for you, but for me as well.

MG + Our Pregnancy:

Yes, we have the full support of my neurologist and the MDA clinic I’m seen at as well as my OB’s office. We made sure that my neurologist was comfortable with my symptom level and maintenance IVIG treatments effectiveness before getting pregnant. I’m now being followed full time by a Maternal-Fetal Medicine OB who we feel is a wonderful fit for us.

No, my past medications should not impact this pregnancy. We waited almost 2 years to be stable on IVIG and off Cellcept, which is a very conservative amount of time and probably much longer than we needed to wait. Most doctors advise 3-6 months of waiting. We wanted to be cautious, and we also had a cross-country move in there where we needed to re-establish care with a new clinic and neurologist.

Yes, my treatment plan is safe for both me and the baby during pregnancy. IVIG is administered during pregnancy for all sorts of issues, and my pre/post infusion medications are also safe to continue using. It does impact our delivery plan, but we are working through that.

Yes, being a mom with a chronic illness is going to present its own set of challenges. And no, I don’t think I’ll become a mom-blogger. I may share some bits about pregnancy and motherhood as I do tend to share some personal anecdotes here, but it likely won’t be my primary focus when I do pop on the blog.

Typically most high-risk OBs consult only and don’t follow a patient for their entire pregnancy through delivery, but it was difficult for us to find an OB who was comfortable having an MG patient continuing bi-weekly infusions during their pregnancy. High-risk for us means not that the pregnancy itself is high risk, but that having a rare disease that impacts my ability to do things like breathe, eat, etc combined with being pregnant could pose some problems. It’s always an adventure finding care. It took quite a few tears and phone calls to get in where we are being seen now on top of navigating the insurance/scheduling hiccups with IVIG. So far, the biscuit is happy, healthy, and has a strong heart rate (but does not like to stay still to find it).

And now, how I've been doing:

Overall, I’ve been feeling pretty good. Dealing with MG for many years has definitely has helped prepare me for this temporary time [pregnancy] in my life. I have been trying to be more vigilant about MG symptoms as some women can experience exacerbations during pregnancy, but an equal amount stay the same and some even feel better symptom-wise while pregnant. So far it seems like I’m in the “stay the same” camp.

The fatigue from MG and tiredness from pregnancy don’t feel the same so it hasn’t been hard for me to tell what’s what. I sleep a bit more and have been napping more than usual due to sleepiness, but it’s not the same feeling as MG fatigue which is more like overall muscle fatigue and weakness vs a desire to sleep more.

I had persistent nausea from about week 4 through week 15, although years of dealing with nausea from GERD and as a side effect from treatments/medications have made this less overwhelming to deal with. Thank you peppermint tea, preggie pop drops, ginger ale, and the fact that eating actually makes this type of nausea tolerable. I am glad I’m pregnant during the summer here because all the fresh fruit has been making me very, very happy even when I don’t have a huge appetite.

Travis tells me (and my doctors, haha) that I’m nicer as a pregnant woman than I am when I have to take prednisone, so I think we are also coming out ahead in the whole hormonal mood swings department. Again, one of the benefits of having been through so much medical stuff together already!

The biggest hurdles with MG will come towards the end of pregnancy and delivery, so I’m going to enjoy this part as much as I can. I am sure there will be tough parts to navigate ahead, and if I feel like it’s worth sharing about then I may share some reflections down the road.

Thank you for celebrating this news with us. We can’t wait to welcome the newest Masters into the family. Now please enjoy some photos from Natalie Franke who flew up the Gig Harbor for the day just to celebrate this time with us (and wouldn’t let this season pass without coming out of retirement for a few family photos).