RA & The Convoluted Path to Pregnancy

I’m finally sitting down to write a review of Arthritis, Pregnancy and the Path to Parenthood, by Suzie Edward May.

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Now this little book is only 183 well-spaced pages and I started reading it way back in October. So what the heck took me so long?

To understand that, a bit of backstory…

As a child, I was never very into dolls. I liked climbing trees and playing ‘kick the can’. I obsessed over animals more than babies.

When I was 8, I got a new baby sister. When my parents first put her in my arms I thought she looked like a sick alien. Luckily she grew into the cutest toddler ever.

I think what I’m saying is, I was never one of those girls who solely dreamed of motherhood. In fact, growing up, I didn’t give it much thought. I just knew that someday I would become a mom. It seemed obvious, but it was not something I obsessed over.

When I was diagnosed with RA, single and 29 years old, my mind immediately went to my hypothetical future children. Was I already too late? Would this disease prevent me from having kids? Would it prevent me from meeting a significant other?

Luckily, the answer to those questions was ‘no’. Although, it did get a bit more complicated.

I started dating my current partner pretty much right after my diagnosis (well, this isn’t entirely true, because we had actually been exes, broken up for several years). It is in fact probably my RA that brought us back together.

The diagnosis softened me and made me more vulnerable, made me want to seek the support of those I truly loved, those who didn’t judge me. The people who truly rose to the top of that list were my mom and my ex-boyfriend. Go figure.

Four years later, we’re still together and wondering how four years have already passed. We’re getting more serious about “us” and those big life questions – What type of living situation do we want? Where do we see ourselves in 10 years? How do we feel about building a family?

My answer to that family question was largely one of emotion. I told my partner that I really wanted to build a family, become a mom. That this is something I always imagined for myself. In fact, given my childhood attitudes and how little I’d actually thought about this, I was surprised at the severity of my emotional attachment to becoming a mom.

His response was built more on logic and fear. One of six kids, he agreed that family was something he always assumed he would have someday, but he was concerned. What would pregnancy and parenthood look like for me, given my RA? What did it mean to get off the drugs? How would the hormones of pregnancy change the trajectory of my disease?

We spoke for a long time and I promised I would dig into it and find more information. I also promised that if my health was truly at risk, we’d look at another path, like adoption.

Problem is, there’s not a ton of info out there about this topic. Suzie Edward May’s book became the sole title on my list of books on the subject.

The  book compiles many first person accounts of their path to parenthood with RA, including Suzie’s. It covers the challenge of getting off your RA meds to become pregnant. It covers the decision whether to stay off those drugs to breastfeed. It covers the possibility of a post-pregnancy flare.

It definitely made me feel less alone in my path. It made me feel scared and hopeful at the same time.

You won’t always succeed. There will be days and parts of days where you are fed up  and sick of pain. Sick of thinking creatively about pain, sick of not being able to do what you want to do, and sick of always having to consider your health. But remember – you have dealt with worse before. Have a cry and then pick yourself up and keep moving forward.

– Excerpt from Arthritis, Pregnancy and the Path to Parenthood, by Suzie Edward May

Suzie doesn’t sugarcoat the hard stuff. I appreciated that, but it drove home what my partner had been trying to tell me.

This isn’t going to be easy. There will be hard times. You have to really, really want this. And you have to be willing to accept Plan B if it’s not in the cards for us.

I’d finished the book, but I felt more lost than ever. I couldn’t yet compose my complicated emotions on the subject.

In fact, the questions I had that Suzie glosses over are perhaps the biggest ones of all. She assumes that you’re reading this because you need kids. You have that drive and you really want your own biological children. But how do you arrive at that first decision? How do you know that you’re ready to take on the challenge of pregnancy and parenthood and ADD to it with the complications of RA?

Then my annual exam in January brought with it some news: I have a low AMH. I know, WTH is that, right? 

AMH, or anti-mullerian hormone, is thought to be a good reflection of your remaining egg supply. And mine was quite low for a 32-year-old woman (according to my gynecologist, there is disagreement on what these numbers really mean and their importance).

Your AMH levels decline as you age. According to my doctor, the level decreases by approximately 0.5 each year after the age of about 25. So my low number is on a steady march to menopause.

The other thing that decreases over time is the quality of your eggs. This is why many doctors recommend having kids before age 35.

This led me to a fertility clinic where they told me some good news: my AMH may be low, but my egg quality is excellent.

So what does this all mean? Well, it basically left my partner and I doing some figuring. We both believe siblings are important and would love to try for two kids. Given my RA, my pregnancies would have some extra time built in, meaning a timeline that looks like this:

  • 3 months off methotrexate
  • 1-12 months trying to get pregnant and being off methotrexate
  • 9 months pregnant and off methotrexate and Enbrel
  • 1-12 months potentially breastfeeding and off methotrexate and Enbrel (this is optional, as formula is available exactly for these situations!)
  • get back on the drugs and recover
  • rinse and repeat

At this point, I had turned 33 and my biological clock was like the relentless tick-tock in the crocodile in Peter Pan.

If I got off methotrexate now and started the path to pregnancy, it would be more than a year before I actually have a baby. Meaning baby number 2 is well over two years away. Given my dropping AMH, baby number 2 might not be an option at all. And this is assuming we are ready to start trying right now, which we’re just not.

So my partner and I are moving forward on freezing my  eggs. This will give us an opportunity at baby number 2 (and number 1 if we run into difficulty), even if my AMH is non-existent. And future baby number 2 (and/or 1) will benefit from the “excellent” quality of my 33-year-old eggs.

This is not a decision we landed on lightly. There are no guarantees when it comes to egg freezing. It’s expensive and not even remotely covered by my insurance. I worried we were just creating another delay in our path to parenthood by not just going for it now. Along with those concerns, I still have to be off methotrexate for 2-3 months (at least 2 months before the freezing takes place), which was a pretty scary proposition.

I’m currently on week 5 off methotrexate and feeling empowered about my decision to freeze my eggs. The weeks have not been easy. My symptoms are definitely flaring. My days are stiff and even my knees, joints that have never been symptomatic for me before, are getting in on the action.

I was truly  hoping that I would get off the drug and feel great, realize it really wasn’t helping and be able to live a life free of this not-so-fun medication. The silver lining is that I know the methotrexate was doing its job, suppressing my symptoms.

This convoluted path to parenthood, the big decisions, none of it is easy. But I’m ready to share my thoughts and my journey. I believe it’s all going to be worth it, and that is the whole point of Suzie’s book.

…make sure you have a full understanding of the impact the process could have on your life, be prepared and have action plans and support in place to deal with situations that may arise. Be open to things not going as you may desire. The more you are open to these types of things the less mental stress you will go through if things don’t go to plan.

Mother of two with rheumatoid arthritis, Australia (excerpt from
Arthritis, Pregnancy and the Path to Parenthood, by Suzie Edward May
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  1. RA, Fertility & Freezing Eggs | My RAD Life

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