Monday, June 17, 2013

5th Year With RA

It has now been five years since I was first diagnosed with RA. 

When my RA anniversary rolled around last year, my baby boy was only a few weeks old and APL and I were still struggling to adapt to parenthood, as all new parents do. I got a few weeks of post-pregnancy remission, but then my RA symptoms came roaring back when OZL was about seven weeks old. After three months of breastfeeding I finally reached a point where my RA was so bad I was having trouble caring for OZL on my own. It was an emotionally difficult decision for me, but I eventually switched OZL to formula so I could go back on my Enbrel and get my RA under control. Honestly I have to say that I do not regret this decision one bit. I'm proud of what we were able to accomplish: breastfeeding exclusively for three months plus frozen milk a couple times a day for another two months. But it is also absolutely true what everyone told me: motherhood is so much more. And now I can be a part of all of it.

This year I've continued to have some issues with my knee, and I may still end up requiring surgery to fix that problem. I've also had trouble with my hands and ended up needing knuckle injections. And, of course, there are all the never ending battles with insurance companies (and battles and battles and battles and battles and battles and battles...dear god why isn't there a better system?!?!?!

Because my RA is an important aspect of our lives, our family has made it a priority to find time to stay involved with the wider arthritis community. We volunteered again at JA Family Day and we had our biggest team yet at the Jingle Bell Run. APL also participated in his first California Coast Classic, where he rode his bike 525 miles down the coast of California to raise arthritis awareness and raised almost $6,000 for the Arthritis Foundation. This blog was also named one of Healthline's 22 Best Rheumatoid Arthritis Blogs of 2012, and I was hired by to manage their Arthritis category.

Five years ago I was a twenty-five-year-old dual degree graduate student, hell-bent on achieving all the things I thought I wanted (or thought I ought to want), but I wasn't actually sure what I wanted at all or where I was going in my life. I was working myself to the bone and I wasn't even really sure why. I had APL, and we loved each other, but we weren't particularly happy with our lives. Today I am thirty. I've had RA for five years, I've been happily married to APL for two years, and we have an incredible one year old son. We just moved into our very first house and today we are so very happy with the direction our lives are headed.

I will admit that being a mom with RA isn't always easy. I have certainly struggled and sometimes I still worry about how I will manage, especially as OZL grows and gets stronger and more active every day. And I'll also admit to being a little scared about the prospect of adding another child (or maybe even two?) to complete our family someday. But, honestly, it's not the same kind of fear I had when I got diagnosed with RA five years ago. That was a fear of the unknown. I was scared because it felt like my life was getting ripped out of my control. But today I realize that my life wasn't even in my control at the time anyways. I had no idea what I wanted or how to get there. But now I do, and it makes all the difference in the world. 


KCFitch said...

Erm... Happy anniversary?

OK... no, seriously. My RA dx anniversary isn't one I care to celebrate either. But like it or not, it has changed me and made me more of who I am today. RA has taught me to let go, to choose what is most important, and to celebrate the smallest victories. It's ironic, isn't it? That despite all the crap that RA has brought, it is now so much a part of my life that I can't imagine where I would have ended up without it.

And you... you've taken it and owned it. You've made RA a part of your life, but in the best way possible -- by helping, supporting, and educating others. Maybe it's a gift we'd rather not have gotten, but it's here and you've made us all proud.

Happy anniversary.

Anonymous said...

My RA will be five years in September. I was diagnosed shortly after my son was born. It has been a difficult journey but like you, it has been a bunch of highs and lows. I have a bad knee too and will also eventually need surgery. Living with RA and trying to have a normal life isn’t easy but nevertheless, it is still life. I agree with your statement about control. I also think it is an issue of acceptance. I don’t think we ever fully get there but we get close enough. - Lana

JIAmom said...

Mariah- I just have to thank you once more, for doing this. For being absolutley honest about it all.... Because as you know, there was not a guidebook out there for a newly diagnosed young woman who was having a child. And I am so grateful for every lesson I have learned by getting to share in your journey... and so thankful that some day, when my own JA girl is 25 - she will have your foot steps to see, to study and to guide a way. You are a wonderful role model, even though I know it was not your goal.

I really dig you guys. Another blessing that came my way because of JA:)

Mandy said...

So awesome how far you have come and it SOOO encouraging. Thanks for sharing and letting me follow your journey! Here's hoping year five goes well.

Mirela said...

Hey Mariah,

I hope that as this five year monster gets older (and hopefully weaker) that you continue to get stronger!!!

Unrelated to your post...sorry. Just meant to say that I never get tired of seeing pictures with your smiling boy. You two even have the same eye colour? How adorable!


~kelly marie~ said...

It is so wonderful to hear you so happy. You are so strong! Sending hugs!