Sunday, November 27, 2011

Our Thanksgiving

We have so very much to be thankful for this year – including a surprise for you:
That’s right – I’m just about three months pregnant! We’re due in June and we couldn’t be more excited!

Obviously my RA has already made the path to parenthood a complicated one for us. Since most RA medications are not safe for use during pregnancy, and some cause serious birth defects and take many months to get out of your system, it was just after the Jingle Bell Walk last year that I started weaning off the medications that were controlling my RA. For almost a year now I have been dealing with various levels of untreated RA – a sacrifice I have been more than willing to make for the health of our baby, but one that has also been both physically and emotionally difficult for me.

I will continue to deal with untreated RA for the duration of my pregnancy. While many women are lucky enough to go into remission while they are pregnant, I’m not sure yet whether this will be the case for me as I’ve been dealing with extreme levels of fatigue lately (sounds like remission, if it happens, usually starts near the end of the fourth month - and I'm not quite there yet.) Either way, the RA will almost certainly be back in full force a few weeks after birth. And the length of time that I will be able to breastfeed will be almost entirely dependent on how much my RA flares after giving birth and how long I can withstand the pain before I need to restart my medications.

Unfortunately, when it comes to getting information about RA and pregnancy there seems to be very little positive, supportive, helpful information out there - at least in my experience. For example, if you Google “RA and pregnancy” here is some the discouraging stuff you will find within the first three minutes of looking:

Discouraging Headlines:
Discouraging Facts:
Here's another discouraging fact that no one really seems to talk about: trying to conceive while simultaneously dealing with untreated RA is no easy task. And, though I am only thee months in, I can tell you with authority that pregnancy is hard, and RA makes it harder.

But I know that I am not alone. There are 1.3 million people in the United States with RA - and 70% of them are women. There are 300,000 children growing up with juvenile arthritis – and most of them are girls. Arthritis affects our lives and our futures – and our children’s futures.

Although there are a lot of great blogs about living with RA - many of them written by moms - I have found very few resources that discuss the complicated matter of getting pregnant and being pregnant while dealing with RA. Here are a few:
  • The book "Arthritis, pregnancy, and the path to parenthood" is a really great resource - written by an Australian woman who experienced RA and pregnancy herself - twice. She also interviewed a lot of women who provide great insight.
  • Curly Bones is a blog written by Christina, who is bravely sharing her experiences with IVF after growing up with juvenile arthritis.
  • I also discovered a post on Stephanie's Mommy Brain that talks about Stephanie's personal experience with Enbrel and each of her four pregnancies. There isn't too much other information on her blog about RA, but the comments on this one post are enough to make you feel less alone if you have arthritis and are considering pregnancy. Although the post was written in 2010, Stephanie told me that she still gets 5 to 10 visits a week from people searching for information on RA and pregnancy.
Since my first post in 2008, this blog has always been a very honest record of my experiences with RA. It has always been my hope that sharing my story will help other people in similar situations - or at least let them know that they are not alone. My pregnancy journey with RA is no different.

Although I had personal reasons for not sharing the story as it happened (which I will explain), I have actually written 22 secret blog posts since last March. These posts cover my pregnancy journey up to this point: from weaning off my RA meds, to trying to conceive, to searching for advice and information, to discovering I was pregnant, to the ups and downs of my first trimester. I will post the first of these tomorrow with the hope that sharing my pregnancy journey help others know that they are not alone.


Melissa said...

Congratulations! My husband and I are not having children ourselves so I can't imagine having to go that long without medication (not that its helping that much...). I hope the pregnancy is kind to you and that it simply whispers back into your life afterwards.. instead of roars.

~Mariah~ said...

MELISSA: Thanks so much for the support. Maybe I'll get lucky and the RA will go away all together! Hey, a girl can hope! ~;o)

Heather said...

I'm so excited for you two! Congrats!

~Mariah~ said...

HEATHER: Thanks! I'm excited to get to the part where food is appealing again. Everyone assures me it's coming soon! ~;o)

Stephanie Kay said...

Congratulations!!!! That is so awesome!! I love that you've been writing blog posts all along and will start publishing them. That's fantastic.

I wrote my RA story last year (the pregnancy posts are part of a series) because I was frustrated at the lack of positive information out there. I wanted other women with RA to know they aren't alone. RA is not a regular topic on my blog. I occasionally mention I have it but it's not my focus. Mainly because RA is a fairly minor part of my life these days. I'm blessed that RA is well-controlled by Enbrel. That's not to say RA doesn't impact me on a daily basis. The disease is still there with minor aches and pains and a whole lot of fatigue. But I just don't think about it that often. Homeschooling 4 kids takes up most of my thoughts these days. :)

As for the fatigue you are experiencing, that's normal pregnancy. With my boys I could hardly stay awake in the mornings. :)

~Mariah~ said...

STEPHANIE: Thanks so much! I know your blog is mainly about being a total Super Mom - and I'm really looking forward to learning some tricks from you! - but I'm also really glad you included some RA posts so there is some uplifting information out there. When things seem overwhelming it's nice to find some hope. ~;0)

Gisela said...

Congratulations to you and your husband. As Stephanie mentioned, the fatigue you are experiencing might be pregnancy-related. I remember too well how exhausted I was for the first few months. Wishing you the best.

KCFitch said...

Awwww! I knew you and APL wouldn't be content to leave me the sole mommy in the cousin gang for long. Here's to some larger family get-togethers in the very near future!

Mirela said...

Dear Mariah, congratulations! What inspiring news. You know I'll be waiting to read more details about the process. You're a tough cookie to get off the meds for that long. Congrats to you and APL again!!!

~Mariah~ said...

GISELA: Thanks! The fatigue is crazy! As someone who deals with it on a daily basis, I never expected it to knock me down so much! But they did just discover that my thyroid dosage needed to be increased, and that seems to be helping a lot.

MOM2LITTLEMISS: I am all for family get togethers. And you better believe I'll be coming to you for mommy advice before too long. ~;o)

MIRELA: Thanks so much. It has been quite a process! I'm really glad I kept a record that I will now be able to share with all of you!

Laurie Grassi said...

I'm rather late to all this, but congratulations, Mariah! I'm so happy for both of you. I can't wait to hear more about how your pregnancy journey unfolds...

:) L

~Mariah~ said...

LAURIE: Thanks! ~;o)

Skye said...

Beautiful pics!!!! We saw our LO over a week ago now and it was breath taking it made the pain worth it! I'm so happy someone else with RA is going through this like me looks like I'm about a month behind you :)

~Mariah~ said...

SKYE: It was pretty exciting and did make it all feel a little bit more real, didn't it? Like I said in the other comment - I'll shoot you an email this afternoon and we can compare notes. ~;o)