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Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Wednesday, February 16, 2011

A Bit Of He Said She Said

A good friend of mine has a great saying, it goes something like this, " I believe that there are two sides to every story, and that the truth lies somewhere in the middle." I love that saying and I believe that in most instances, it is applicable. However, there are some things that you just can't argue the facts on. You can't fight statistics that are backed by extensive scientific research. Those of you living with a chronic illness or parents to a child with a chronic illness, how many times have you been told that there are more natural, better ways to treat the disease? All of you right? Wouldn't it be great if that would work? I mean really, who wouldn't prefer to treat a disease with natural, from the earth products?? Sadly, those of us who are in this, know that can't be done, it won't work.
A couple of weeks ago an article started circulating on Facebook and Twitter. Unfortunately I can't find the link to the newspaper article, just the blog post. Doesn't matter, still the same rubbish. This piece of rubbish was written by a doctor of Oriental medicine practicing Korean Constitutional Medicine in California. Now, I admittedly know zilch about Oriental medicine. I had never even heard of it before reading this blog post/article. I do however know autoimmune disease and more specifically Juvenile Arthritis. Therefore I can easily say with the utmost confidence that what is written is total rubbish. Here are a few key points just to give you an idea.

"JRA is usually temporary and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time."
FALSE! It WILL last a lifetime until a CURE is found! The strengthening of the immune system would only make it worse since the treatment of JA is suppressing the malfunctioning immune system!

"It is believed that pregnancy should be a planned process with both parents being in ideal health condition prior to conception. The proper weather on the day of conception also plays a part, as well as the energy of the parents, which also includes genetic influences."
Yes clearly an unplanned, unwanted pregnancy caused some kids autoimmune disease, of course. And please, parents, be sure to only conceive your child on optimum weather days okay?? SHEESH!

"The best treatment for these children is daily massage of the affected areas, better nutrition, reduced stress, light acupuncture and moxibustion treatments, herbs, and added love and affection. "
Yes obviously daily massage can help ease pain, better nutrition is ALWAYS key for ANY child, acupuncture sure, herbs, whatever, ADDED LOVE AND AFFECTION?! DUDE, if love and affection could cure my child, SHE NEVER WOULD HAVE BEEN STRICKEN WITH THIS!

Then yesterday a friend posted another article. This one, this one makes sense. There are no facts to be disputed, no fluff, just a simple four paragraph article written by a woman living with autoimmune disease since she was a young girl. She writes wondering what it's been like for her parents. Now she is a married woman and has children of her own. She says, "I would sail over the moon to do almost anything for my kids.". She also says, "I often think about the roles of my parents in my battle with chronic pain and illness. I had never considered their feelings before, or what they must feel about how I am doing, because quite honestly, my battle has been very overwhelming because of the level of pain I deal with every day. " AS the parent of a chronically ill child, I cannot begin to tell you how much her words mean to me. She goes on to say, " My Mom is my role model for motherhood." and "My parents are my heroes." I can only hope that Larry and I are doing even close to this well for our Jenna "Bean". I tell you this kills me, it KILLS me everyday that I can't take this from her. I feel it's my own personal failure. WOW....where did that come from??? Well there it is. I guess it's been inside me somewhere, my heart or my head. I feel as though I have failed her miserably, in the biggest way possible. I'm not protecting my child from the monsters in the closet so to speak. Her JRA is her monster in the closet and I can't make it go away with a hug and a kiss, with story book or a song sung at bedtime, with a prayer or a favored stuffy. Mommy can't fix this. I would give my HEART to her if it would fix her and make her well.

I had no idea that writing this post would bring any of this out of me. I thought I was just going to be sharing some recent articles, facts and opinions. I can't tell yet if this WAS therapy or if I NEED therapy. But, now I need to go find a tissue...


Deetipton said...

LOL! Yeah, writing is therapy to me, too. Sometimes I don't know what I'm going to say until after it's said. And that article STILL has me angry!!! But it also drives me more, ya know?

I also read (& commented on) the Spoonie post. I truly needed to read that, too. I don't feel like it's my fault, but mostly because our families both have a LOT of autoimmune stuff. Kevin's grandmother was finally diagnosed at age 19. She turned 93 yesterday. (I blame him ;P ) We both know that it just happened, & nothing we could have done would have stopped it. But I do love getting into the heads of people that have dealt with this before. I will forever be trying to understand while quite probably never being able to. That's why I'll fight.

P.S.- I miss you! I don't get to Twitter too often, but it seems like I don't "see" you anymore :(

Flyboyz4 said...

I am so glad I found your blog! I live in Cleveland and all the JRA forums out there are not active, or barely. Thank you so much for sharing so I do not feel alone in my struggles. My 7 year old daughter has Oligoarticular (extended) JIA. What does Jenna have exactly? Her story is almost identical to Jenna's. Began at age 6 with swollen knees...If one more person tells me to try a naturopath or to take her to Europe and dip her in the thermal waters out there for healing I think I will scream.
Taylor, my daughter is going to be walking at the Arthritis Walk in our area this April. I encourage you to view her story and pass it on if you'd like. Your story is very familiar to the shortage of Rheummies nationwide (why you moved from ME to NC)

Amy Cunningham said...

Hi there I'm so glad you find my blog and that it could be of some help to you! When Jenna was 1st dx I felt 100% alone, surely there weren't others?! Then I found a blog :) Then *I* started a blog! We just got the official dx of extended Oligo JIA!! Three years in and we are STILL learning. Are you on Facebook? There is a private group on there for JA Parents. If you are interested just let me know and I will let the admin know to add you. It's a great group of folks :)