Wednesday, March 2, 2011

I hate feeling helpless

Tonight the kids and I were watching Mystery Diagnosis. I record it just about every day and we watch when there is nothing on. The kids find it interesting and I often find myself thinking, I should have been on this show.

We were watching an episode about a teen age boy and Jordan would ask questions about what tests they were doing and if she had any of the same ones done. I'm sure she did but after all these years I don't remember. She goes back to watching then turns to me and basically yells, "WHY ARE THERE CURES FOR OTHER THINGS & NOT THIS?"

The look on her face said it all and she almost started crying. I had to hold my tears back. She's had enough. We've all had enough. Arthritis has made my baby grow up too fast. She's tired of taking these meds that make her sick, she's tired of being different. For the most part she has accepted that this is her life and she does really well dealing with it. But then there are times like this when it gets to be too much.

The episode we were watching ended with the boy being cured with an antibiotic. Some rare illness that only 1 in so many tens of million ever get and it's cured with an antibiotic. Here we are with close to 50 million people and 300,000 children living with a potentially deadly disease and we're no where close to finding a cure. I know the same can be said for diabetes or HIV and I'm not saying that arthritis is more important then those diseases. Why are there so many people working to find a cure and treatment for those diseases but not for arthritis?? Is it because it's "just arthritis?" Only old people get arthritis, right? Not the kind of arthritis that Jordan and I have. This can kill us. And I know people don't get how life altering arthritis is. They don't understand because it's not put out in the public eye like HIV or diabetes or cancer.

Everyone has something they fight for. Something that is close to their heart for whatever reason. This is my fight. I will do whatever I can to help find a cure for my daughter and the kids just like her. No one should feel the pain I felt tonight, it was like a thousand daggers in my heart.


"I don't know, baby." What else could I say?


B Wallace Family said...

This is very well said. You bring up some very valid points. I have had JRA since I was young and have had long periods of remission.
My niece just got diagnosed with JA this year. I am like you trying to figure this stuff out.

Amy Cunningham said...

Aw crud, you went and made me CRY! I love this post as much as I hate it. I hate that it even NEEDS to be written. I love that you put into words, so beautifully, what SOOOO many of us feel. Just yesterday i was thinking about how much I would love to meet your family. Maybe some day :) Hugs and love from me and mine to you and yours.

Living AutoImmune said...

After I put the kids to bed on Wednesday I cried. What else could I do? I am so frustrated with this stupid disease and J asking why we don't have a cure pushed me over the edge.

Amy, someday at a JA conference!

Deetipton said...

I can totally relate. Just this week I overheard Emily telling her brother "No, Zach! I don't remember the good times. I only remember hospital visits, shots, IV's, blood draws and doctor visits". how f'ud is that??? It's so wrong what our kids go through. Just wrong, and it's so unfair. At least Jordan has an interest in the medical field. Maybe she can work for a cure :(
I feel the same way with both of you- I'd love to meet both you & Amy and your families. Let our girls play together & chat.

supermom said...

I am in the same vote about the cure. We are full of hope these days. Breanna has fought this thing hard since just 14 months old she too doesn't remember the good times only doctors, medication, shots, stomach aches and pain. For the last year she hasn't had joint symptoms. We have been off NSAIDS (meloxicam)only occasional Ibuprofen when she was sick. We are hoping that she can tolerate lowering the dose of MTX. My sister asked me if I cried when I found out. No I can't seem to be happy as long as she still seems weak and can't eat she is still sick all the time. My hope is she will come off the meds and that all this is just the side effects of the MTX. I know things are better than they were 10 years ago. This long battle only left her feet with joint changes. I can't tell by looking at her anything is wrong. Is it wrong of me to want and hope for better medications that don't lead to GI specialist? Maybe something that actually cures it so we don't have this gloomy cloud over us wondering when or where it will strike next?