Sunday, January 29, 2012

It Took Years (& Tears) To Get That Smile

“You take the bad with the good, Rise up through it. Live in the mist of it. It's the bad that lets you know how good the good really is. Don't let the bad leave you thinking like there ain't any good. There is, and lots of it, too. ”
― Charles Martin, Chasing Fireflies
Life with a chronic illness isn't easy. Often people who are diagnosed with RA, or kids with JA, have suffered through a lot of testing, different medications and of course, pain. People look at us and think, "She looks great! She can't possibly be THAT sick." Well, yes, we can be.

What the public doesn't see is the stuff that we must endure to look so good. They don't see the shots we give our kids, many are on methotrexate. MTX is a chemotherapy drug used in cancer patients. It's used in lower doses for autoimmune arthritis treatment, but the side effects are the same. Hair loss, nausea and vomiting, extreme fatigue, liver damage, ect. Many of us describe the days following our weekly dose of MTX as a hangover feeling. It's not nice. You don't see us sitting at the infusion clinic for hours while medications drip slowly into our bodies all while praying for relief. You don't see the bottles of medications sitting on the kitchen counter, night stands or dining room table. All you see is that smiling photo the media CHOOSES to show you.  

I'm all for showing the happy face. However, there is a lot that goes into looking this good and the world will never understand how serious these disease are if we don't show the BAD with the GOOD. Jordan doesn't always roll out of bed with a smile. Like several other kids and adults, she doesn't sleep well when she's flaring. She's still stiff most mornings no matter how controlled her disease seems to be, but she hides it.

Over the years, we've had to put Jordan on a lot of medications. MTX scared me, but she needed it. We added Enbrel but she failed it after about 9 months. We had to switch to Humira. Humira, in Jordan's opinion, is the worst med she has ever been on. MTX made her sick but Humira sent her into a hysterical fit every 2 weeks. It took us hours to get J to even sit down so we could attempt the shot. Humira burns. J says it's like injecting acid into your body, only a million times worse. Once we got Jordan to sit with me, it sometimes took another hour to let us give the shot to her. I can still hear the scream the first few times she had the injection. To know something hurts your child like that, but can save her vision and her body is the worst feeling in the world. After about one year, we were able to count through the shot. Eventually she allowed me to record her injections so she could help others get through their Humira shots.

In November 2010 Jordan started Remicade infusions because her body stopped responding to Humira. I hated the thought of doing this but I knew we didn't have any other option. She was swollen and her eyes were flaring. It wouldn't be long before the disease made it to where she couldn't walk again. Jordan responded well for 13 months. In January 2012 we switched her to Orencia because, in true Jordan fashion, her body stopped responding to the Remicade. While there are still a few meds left for us to try to help the JA, Jordan has the added issue of uveitis. Some meds are used to treat both diseases but many are not. Right now are choosing to treat the JA and pray that her eyes respond as well. If they don't, I don't know what we'll do next.

I guess my point in all this rambling is, Jordan, like myself and MILLIONS of others, MUST do stuff like this,

So we can keep smiling.

We cannot allow the media to keep showing the good, without the bad. People know what cancer can do to a person. Shouldn't the public know what autoimmune arthritis can do to us? Shouldn't the public know that people DIE from this disease? CHILDREN DIE. That sweet boy who lost his life to to JA was just a few weeks younger than Matthew. It's unacceptable. The world needs to know how serious and complicated autoimmune arthritis diseases are. 

1 comment:

Coopy said...

My heart goes out to you both. I too suffer at times, live with at most & once in a blue moon actually beat back the disease. It is one of the most viscious battles I've had to endure the last 6 months. I've been on all the routine meds and just started simponi as a try out. It appears it too is failing me with side effects. As I type, my face and neck have welts & it's beat red. I'm pretty sure it's a no go. I'll call doc in the morning and go from there. I completely understand what you both go through.

I'm so sad we are hearing of another life lost and soul gone to soon. It's heart wrenching to me. I just wish more attention could be brought to the limelight so others would not be so quick to judge or snip at others. It's a daily battle most days and we are doing good just to stand up, take a step and rejoin life when our joints warm up and let us move forward.

Love and hugs and always my prayers for you both. T