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...

2011 JA Conference

The site is finally up!!! WOOT! The info that we have so desperately been waiting for is here! We are going into our third year on this journey but this will be our first year at the conference. Year 1 I don't think I knew anything about the conference, or if I did, I didn't think we needed it. HA! Year 2 we just had too much going on in our lives to even think about getting there. Year 3, this is our year! I am so excited to do this, I just can't even begin to describe it. Trying to figure out if we will go as a family since the rates are all the same anyway, or if just the Bean and I will go. If it's just the two of us we will take the train which will be way easier for her. If we all go we have to drive since 4 (or 5, another long story) train tickets will be too expensive. The drive will be painful for Bean, but then we aren't tied down to the train schedule which quite frankly, bites. So, lots of decisions to be made, but, bottom line is, at the very least, Mama and Bean WILL be there! And if Daddy and Bub have to stay home, they announced yesterday on their Facebook page that they will be doing webstreaming this year. SWEET! Not the same as being there but at least they can join in and learn with us. I cannot wait to meet all of these people that I have been blessed to come to know in a virtual world. I will finally be able to speak with them face to face, hug them, laugh with them, cry with them, SHARE with them, in person, in real life. SO very blessed. Thank you God.

It's A Family Affair

Life with chronic illness really is a family affair. Those of you living it likely already know this. Or, if you are new to chronic illness then maybe you aren't "there" yet. And, if you are the fortunate one not touched by chronic illness at all in your own family then pay attention :)

Two and a half years ago when Bean was diagnosed with JA and then with Uveitis we had no idea the impact it would have on our family. We just thought, "Okay, so she's got this thing, she'll take meds, it will go away and maybe come back, no big." HA! Can you say blind? First of all, it doesn't always go away. I have recently "met" some teenagers on Facebook with JA. They have had it since they were little tots and have never made it into remission. Dang. Second, yes, it is possible to end up in remission, but with so many kids, it just comes back a couple years later. So, guess what happens once that kid hits remission? The parents sit and wait. Wouldn't it be great to be able to just shout from the rooftops that "it's" gone and then go about leading a normal life? Not gonna happen. Heck, even while in "medicated remission" the parent sits and waits for the proverbial "other shoe" to drop. You see that is the other scenario that often times plays out. The child gets into a "medicated remission". That is when they are currently on meds but symptom free. Typically what happens is that after 2 years of being on meds without symptoms of the disease, the doctor will start weaning the meds with the goal of coming off completely and not having the symptoms return. But, sometimes while in that medicated remission the current med stops working. What?! Yes, it just stops working. Then you go back to the drawing board and start all over with yet another med. It's exhausting, frustrating and frightening to think about all this. Then there is when something new pops up and it gets you thinking, "What now??". A parent of a "normal, healthy" child likely doesn't panic over every headache, stomach ache, fever, rash, ache, pain, limp, ANYTHING out of the ordinary. I know I never did. And that worry isn't just limited to the child that has the diagnosis either. With a hereditary disease you have to worry about ALL of your children. I have 2 other children that could, potentially at any time develop JA and Uveitis just like their baby sister.

That's part of how it's a family affair. The parents never feeling like their minds can rest. Then there are the siblings. Another JA Mommy blogged last night about how chronic illness affects their family. One BIG way it has is this. "It broke my heart today when Matty got sad and upset because we can't sign him up for baseball this Spring. He looked at me and said "If you and Jordan weren't sick I could play." And the thing is, he's right." I can't tell you how many times we have had similar things happen in our own house. "Can we go to the park today?" No, your sister needs to rest. "Can we go to the mall today?" No I'm sorry, you're sister can't walk that much. The list goes on and on. It's ridiculous the things that we keep our other kids from doing because their sister is sick. Another Mom recently blogged about a photo that her oldest daughter had found of her baby sister from earlier in the year. "A few nights ago, my oldest daughter found a picture of Emily that I had put in the scanner. It was from the last year around this time. She has a cute little smile, and she looks happy and well. Gir stood looking at this pic for a while, and then says "It's so sad but I forgot what she used to look like". We all had like a moment of silence. It's so hard to get used to this being her. " Then there is shot night. My oldest daughter can't even be in the same room when Bean gets her shots. I have asked her to please come sit and hold her sisters hand. Let her know that you are here. Tell her it will all be okay. She just can't do it. I don't know what part of that breaks my heart more. My son on the other hand can typically stay nearby for shots. Many times he has gone to his room and come back with his blankey and favorite stuffy from when he was a baby. He gives it to her to comfort her. Two weeks ago, her Humira shot was so not going well. It was a really ugly fight. I looked up just in time to see him run from the room. *sigh* I hate that. I hate what it does to my other two kids.

Of course, let's not forget the strain on the parents marriage. I used to hear about families facing tragedy that crumbled and fell apart and never understood it. Why would they not form a closer bond and help each other through. I still don't really know why but I have an inside look now. It is really hard on a marriage having to deal with a chronically ill child.

I just re read this and I'm thinking to myself, "I don't want this to BE our lives!" I don't want us to be defined by the disease. Yet how do we not? It is part of our EVERY day. I would love to pretend that it isn't there but I can't. Maybe there is a balance to be found.

This Is Why I blog

Last night as I lay in bed, trying desperately to turn my brain off (put the jokes AWAY people!) and fall asleep, I couldn't stop thinking about my blog. Mine and all of the others that I have found along this journey. I couldn't stop thinking of how so grateful I am to have this whole universe of fellow blogging JRA Moms & Dads. To know that we are not alone in this war that rages on in our children is such a comfort. Outside of our blogs, many of us have found each other on Facebook. Just another way for us all to stay in touch and be a part of each others lives. For this I am so thankful. I know that I could not do this on my own.

Nearly two and a half years ago now, when Bean was first diagnosed, I was so confused. I knew of arthritis. Many people in my family have it. I had a childhood friend that had JA. But I had no clue what it all meant. I didn't understand any of the terms that these doctors were using. I didn't understand what my child was going through. I didn't know how to cope. So I of course googled JRA. I didn't come up with much. But I did come across a blog written by another JRA Mom. Her blog was filled with facts about the disease in general as well as personal facts about her sons battle and her part in it as his Mom. I felt this huge relief! There are others out there going through the SAME thing! So I sent her an email, asked her some questions, she was GREAT. Since then we have become friends through the internet. Man I love the internet. We even got to meet face to face one time. When we lived in Maine and Bean was seeing Dr. Foster for her Uveitis, this Mom's son had an appointment the same day! You can read about that appointment and see some photos here. She has been such a tremendous help and comfort to me right from the start of this journey. She continues to connect me with other families as well as educate me.

So this is why I blog. This is why all of my Facebook and Twitter friends are seeing my blog constantly posted and plastered everywhere. This is why I am constantly asking you to share the link to my blog. It isn't so that everyone can read about my daughter for MY benefit. It's in the hopes that I can reach even just ONE family that feels alone. Or in my feeble attempts, maybe I can help educate someone about JRA and Uveitis and all the junk that goes along with it.