Monday, November 28, 2011

Secret Post #1: I've Already Stopped My Meds

NOTE: This post is part of a series that I wrote in secret during the months before I announced my pregnancy. The series chronicles my pregnancy journey: from weaning off my RA meds, to trying to conceive, to searching for helpful advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. You can read all the posts in this series here.

This Post Written March 24, 2011

I don't usually draft my blog posts - I just write whatever I'm thinking about and post it immediately. But this topic is different.

Usually it helps me to be painfully, unflinchingly honest about my feelings and experiences with RA. I tend to sort out my own feelings while I write, and posting right away often sparks dialogue with people who are going through the same thing, which I find useful.  But, unlike most topics, this time I see a downside to telling all the world what I think and feel right now. 

However, after relying on this blog so heavily for the past 2+ years to sort out my feelings, it feels really weird to spend so much time thinking about something I'm not writing about, especially when it is a topic that is so centrally related to my life with RA. This blog has always, always been about providing an honest record of my experiences with RA - and I feel like I'm holding out on people who could learn from my experiences with this topic. Or missing a chance to get connected with people who could help me.

But I also know that I need to do what is best for myself, and right now I don't think it will help me to post about this topic. So I am writing a secret post - as a record of how I feel today - that hopefully I will be able to post on the blog someday. Though I don't know when.

The truth is this: when I wrote the post entitled Arthritis, pregnancy and the path to parenthood the other day, I had already started the journey of coming off my arthritis meds to prepare myself for pregnancy. Which is why, in particular, I found Suzie May's book to be so incredibly helpful - full of useful information, perspective, and hope as I embarked on a difficult process. 

APL and I have been together for 8+ years, so we've actually been talking about wanting to have a family together for a long time - probably even before the RA diagnosis. RA just put in an extra layer of complication to a goal we already had. Over the course of many hours (days, weeks, months) of discussion, we figured out that my biggest worry related to pregnancy and RA was not actually the pain of having to come off meds (which, of course, probably won't be pleasant) but rather the anxiety and pressure of having to "try" to get pregnant with a body that regularly does stuff that I have no control over whatsoever.

In a perfect world, we would have just stopped using birth control after the wedding and waited to see what would happen - no stress, no pressure - but obviously with my RA that is simply not an option for us anymore. Here in the real world, we're going to have to plan for pregnancy months in advance, and then we are going to have to "try" to get pregnant as quickly as possible to reduce the amount of time I have to go without the meds that keep my joints from becoming damaged and disfigured. This is never the way I pictured going about starting a family, but it's now my reality. 

I also have to admit that from almost the very moment I got diagnosed with RA, my deepest, darkest, middle-of-the-night fear has always been that I can't trust my body anymore and that I won't be able to get pregnant.

So the more APL and I thought and talked about it, the more clear it became that the pressure of "trying," plus my anxiety over having a body I feel like I can't trust, was going to make for a really stressful situation in which to try to conceive. And then, if we couldn't conceive right away, there would be the added stress and pressure of failed attempts. And then the longer it took us to conceive, the worse state I would be in from having been of my RA meds for so long, and the worse shape I would be in for "trying" (if you know what I mean). Any way we looked at it, it just felt like a horrible feedback cycle of increasing stress and anxiety, with success seeming unlikely.

So, after discussing all of the pros and cons we could possibly think of, we decided that we would get our best shot at a relatively "stress free" period of "trying" if we ride the wave of adrenaline and good, happy, positive feelings from the wedding and honeymoon. Since the wedding is only two months away, this means that I have already had to start the process of coming off my meds (particularly methotrexate, which stays in your system for a long time after you stop taking it and can cause really scary birth defects).

We both know that it's pretty risky to try coming off my meds before the wedding - because who knows how it will end up making me feel (though so far, so good, aside from quite a bit more hand pain than usual). But we have decided that it is the best strategy we have for dealing with my biggest RA/pregnancy fear - our best chance for a "normal" stress-free shot at starting our family. Probably not the best strategy for everyone trying to deal with RA and start a family at the same time, but it's the best one for us.

Trying to reduce the amount of stress and anxiety I feel about this process is, of course, the reason that I am not going to publish this post when I finish writing it. Announcing our intentions at this point would only put more stress on me and increase the anxiety I already feel about how my body will ultimately perform. And I don't want to feel any extra pressure or judgment on a decision that, ultimately, belongs to no one but me and APL.

I do fully intend to share these feelings on my blog - because I'm sure they would be useful to someone contemplating pregnancy with RA. But I can't say when I will do so. Not yet. 

I'll just have to wait until I feel ready to be honest about this one. Only time will tell.


Stephanie Kay said...

You are so right that RA adds an extra (and VERY unfair!) layer of complication to pregnancy-related decisions. Getting pregnant quickly is a definite plus. I can't imagine going a whole year completely off meds before conceiving. Makes me exhausted just thinking about it. That's part of why I chose to take Enbrel until I had a positive pregnancy test (the 2-4th times).

If I were reading this when you were trying to conceive I would recommend tracking your basal temperature to help determine when you ovulate. I know a lot of women who've used this method to get pregnant (and to keep from getting pregnant).

Again, thanks for sharing this series.

Helen said...

Congratulations, Mariah! I've just seen your two latest posts, and I'm so excited for you! What wonderful news. I can't wait to hear more about your journey.

~Mariah~ said...

STEPHANIE: It was the methotrexate that I stopped taking around this time last year - as I wanted it to be off it for six months before our wedding in May so it would have time to get out of my system. With my rheumatologist's advice, I actually ended up staying on Enbrel until I had a positive pregnancy test as well. Unfortunately for me my RA wasn't nearly as well controlled on Enbrel alone. After 2 relatively stable years I struggled a lot with the changes in my medication. (Though I also have to say that without at least the Enbrel there probably would have been no baby!)

I guess I wasn't very explicit about which meds I was on when I wrote this post (1) because I think which meds to take/not take, especially when trying to conceive, is a very personal decision that should be made with your spouse and doctor and (2)I obviously made the decision but I can't yet vouch for the outcome. Which, of course, is another reason I was so pleased to find your blog!! ~;o)

HELEN: Thanks so much. We're super excited too!