Thursday, July 25, 2013

This is my life

In early 1990, 2 kids met and started dating. I was 15 and Rick was 17.

We met shortly after my hips started acting up. Before my hips, my ankles had been casted for "unexplained sprains." The swelling and pain never went away. My fingers would swell up for no apparent reason. In winter, my hands turned blue. Not one doctor I saw put any of this together.

 After a few years of an on and off relationship, we decided to move in together in March 2001. 13 months after moving in, we welcomed Baby Jordan into the world. My pregnancy wasn't easy but looking back, I didn't have my usual pain. I had to have a c-section, I couldn't nurse and I felt as if I failed my baby. I sunk into a deep depression and I almost lost Rick. 


 In October 2003, 13+ years after we met, we made it legal. 

On September 23, 2004 Matthew joined our family. No, we weren't even married a year yet. We wanted the kids to be close in age so we started trying as soon as possible.

A few weeks after Matthew was born we noticed Jordan had a slight limp. She was 2 1/2 so it really didn't register that something could be seriously wrong. On Christmas Eve 2004, instead of making cookies, I spent the afternoon in urgent care. They did x-rays, told me she had fluid in her knee but she probably injured it. She should be fine in a few weeks. If not, follow up with her regular pediatrician.

Jordan didn't get better, she got worse. Mornings and naps were hell. She couldn't get herself out of bed. If I was downstairs nursing Matty I had to stop, which he did not like, or go up so I could carry her down while keeping the boy attached. That took skill! 

Her pediatrician referred us to an orthopedic surgeon. I didn't like him. He looked at her films, said there was fluid but he was sure she injured her knee. Jordan would be fine.

  I was not happy with that answer. I scheduled an appointment with a pediatric orthopedic surgeon.  Within a matter of seconds he told me she had juvenile rheumatoid arthritis. Say WHAT?! She's TWO! She was scheduled to have arthroscopic knee surgery in a matter of days. Her knee was drained, a biopsy was taken and she was officially given the JRA diagnosis.

Life for us has not been easy, buuuuut it hasn't been as bad as it could be. In October 2008 I had a hysterectomy because I had adenomyosis. My right ovary was covered in cysts so they took that too. In July 2009 at the age of 34 I was diagnosed with RA. Shortly after that, lots of RA friends joined in. Fibromyalgia, Raynaud's, my lupus labs go up and down. I am a walking autoimmune mess. The thing is, I've been living with this for far longer than anyone had thought. I am a JA'er just like Jordan. Because I wasn't officially diagnosed as a child, and all my specific labs for RA are either low or negative, I have sero-negative RA.
I'm sure you're asking yourself why I wrote all this when I've told our story several times and if you look hard enough, you can find it on this blog. I'll tell you....

Not too long ago Jordan said something about getting married. She didn't think anyone would want her because she is chronically ill. Rick took this one and this was pretty much the conversation.

R: "Is Mommy married?"

J : "Yes."

R: "How long have we been together?"

J: "Like, forever."

Me: "Still think you won't find anyone?"

Rick and I have pretty much been together forever. Yes, we had issues but we always found our way back to each other. Over 23 years and he didn't leave when our world was falling apart. He had people tell him if they were in his shoes, they would have left. Apparently those vows "in sickness and in health" don't mean much to some people. I wouldn't blame Rick if he did leave. Having a chronically ill child can tear a marriage apart. Having a wife AND daughter? There are days when I am surprised he's still here! 

I have days when I rely on Rick to do everything because I can't move or even get out of bed. If I could change ONE thing about our lives it would be curing Jordan. Of course, I can't. The best I can do is teach her how to advocate for herself and assure her that there are men out there who will take care of you when you are at your worst. If you meet someone and they can't deal with your life, they are not the person for you. All of us have had to make sacrifices. I believe these challenges have made our family stronger and closer. Even Matthew is so concerned about others and how they feel. He wants to help, always. 

Rick and I are a freak thing, I know that. But after all these years, seeing me at my worst he's always been there to help me. And for that I am eternally grateful.