Hello again!

I know it’s been forever, but I’ve been so busy getting my life together (and actually getting a life) that I haven’t found the time to post anything. I think I was also waiting for some inspiration. I am in the middle of a food/cleansing experiment and I don’t want to write too much about it until I know if it helps me or not. Anyway, inspiration came today in the form of an angry comment. Recently I made a post called “U might have RA if…” and it was loads of fun. Unfortunately one mother didn’t think so. (my response is below her comment):

“Great discussion, I don’t know if I would laugh about having RA, my child has systemic JRA, and as a parent all I want to do is cry. Its not funny at all, our lives are miserable. My child is only 7 years old and can’t play, she can’t even put on her cloths to make it to the bathroom. Yeah real funny. What’s funny is that I typed in hot tubs for JRA, and ended up on this loser blog. Nice! Yeah, nice about dreaming of cancer. Because my child has Systemic JRA, her lymp nodes were 2 inches in diameter. Just talk to a Cancer Doctor. She just had a biopsy done.

Why don’t you people spend your time educating yourselves and log onto http://www.raceforcarra.com and find out how children with JRA suffer. Its not funny trust me!

I know that you have to laugh at yourself, but for children is sad and they aren’t laughing and neither are the parents.”

This was my response:

I have systemic juvenile rheumatoid arthritis and was diagnosed when I was 11 years old. After 10 years (6 different meds, life-threatening side effects including pre-lymphoma, bone marrow biopsies, infusions, re-learning how to get dressed, having to quit lacrosse and ballet, thousands or tears, hundreds of doctors appointments and a decade of disappointment), all you can do is find humor in a disease that ruins (or changes for the better) your life. You will see in time what I mean. I am sorry that you haven’t found a way to laugh at life’s injustices yet. In time it will come. I’m sorry to hear that your daughter is suffering so much, hopefully she will not be in this flare for too long. My mother and I understand yours and her pain as it is a very difficult thing to go through childhood and adolescence without the ability to laugh, play, and move with your friends. Luckily, I was able to keep a smile on my face and know that life would give me happy moments despite the overwhelming emotional and physical pain. Perhaps we who responded to this discussion are all disappointed with our life’s challenges and feel that we were served an unjust slice of life’s pie…and now we deal with it through laughing at how unjust it really is and how much pain it causes us. I can say from experience, after I fall into the tub from two feet because I can’t bend my knees enough, I have to laugh at myself instead of cry to ease the pain. Laughing eases the pain whereas crying perpetuates it. I hope you all find a way to live happily with this disease, which is what we here are trying to do. I am here to talk if you ever need support or a laugh :) -Robin”


~ by thetruthaboutjra on April 2, 2009.

7 Responses to “Hello again!”

  1. Good response. I completely agree with what you said. We really have to focus on the positive and see the humour in things. I mean, as frustrating as it is to holler for help to get out of a bathtub, it is kind of funny. And crying about it, just makes it worse. That is one of my goals for this year, to not get stuck in the bathtub!

  2. LOVE your response Robin. I think we have all been at a place of anger with this disease and will most definitely be there again and again. However, finding blogs like yours that look for the positive and look for solutions gives me energy and hope. When I read horror stories, I just want to go to my bed, cover up (that is if my wrists aren’t swollen and I have to ask someone to help me cover up.) and leave the world behind me.

    I wish only healing thoughts for this mother and all moms that have to see their child in this state. I know that as the mother, the pain for yourself can seem almost unbearable as you watch your child and know you can do nothing or worry that you could be doing something that you aren’t. Being the mother is very difficult.

    My kids and I still have to laugh at the time I was stuck in the tub, had to have the dog wake the kids up to help me, and then it took both of them pulling on me as I had tears streaming down. Finally, we all just stopped and totally cracked up at the situation. After a good laugh, we somehow got me out of the tub. Laughter does work!

    (I think I just blogged on your blog. Sorry!)

  3. It is too bad that someone wasn’t able to see the need of laughing at our disease. I’m glad that you posted about this. I think sometimes I get stuck in taking it too seriously, and it helps to be reminded that humor can be found in it all. Where can I find the list you referred to? For some reason I can’t locate it. Thanks.

  4. Robin you are AWESOME (yes, I actually intentionally used your “favorite” word haha). That response was heartfelt, direct, and positive. I hate it when life’s little negativities like that comment can ruin my day and I so respect your poignant response. I hope that I and others can learn from your example!

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