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Totties Pretties on Etsy

Totties Pretties on Etsy
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.

Monday, March 26, 2012

A new day....a new diagnosis....

For quite sometime now, I don't even know how long, I have been worried about Jenna's emotional well being, her mental state. She will say things like "I hate my life, I hate myself, I don't know why I was even born, No one loves me, I have no friends, I'm all alone". She told me the other night that she is sad every day. Not necessarily all day, but most of the day, every day. She is just a little girl, that's too much! I finally broke down and called her pediatrician. That was a big step for Mama, it meant admitting something is broken and needs fixing. I went in to today's appointment thinking to myself, "she just has a lot to deal with, more than most kids, (2 chronic illnesses, daily meds, weekly injections, being apart from her big sister, etc) we'll just get her some counseling to work through it all and she'll be right as rain. Well.....not quite how it all went down. She asked a series of questions, such as "Is she picky about her clothes? Is she picky about food? Is she picky about her surroundings?" I'm thinking to myself, "What the heck does this have to do with anything??" I tell her how Jenna (I didn't want to say she is mean in front of her) is not exactly nice to her friends, that she is bossy with them. The doc says, "Well how do you mean? Is it maybe more that she is controlling?" Well....I suppose so. "Does she not like being touched or handled physically?" Ooooooooh no!!!! You cannot touch Jenna, ever. At this point I can't even remember all of the areas of day to day life we covered. She eventually tells me that while she thinks Jenna could for sure benefit from some counseling to help learn to identify her emotions and learn how to cope with them, what she feels will help the to help with Sensory Processing Disorder. I'm sorry, say wha?? Really?? She explained that we ALL have sensory issues to a certain extent. Such as fabrics we don't like, foods we don't like, sounds or smells that bother us, but WE can cope and adapt. I child with SPD cannot. It can send them into a fit of rage, cause a major emotional meltdown, cause them to shut down completely, etc. Ooooooh, Oh, I see..... She said most kids will innately know methods of coping. BUT, most of them are physical. Such as carrying heavy objects, moving about fast and furious, covering their bodies with lots of heavy blankets, squeezing their joints. ALL of these things are likely causing her pain (because of the JIA) which in turn will cause another meltdown, another shutdown, another outburst, not necessarily in that order. The more that we talked, the more everything became clear to me. She has likely had sensory issues since birth, most people do. But given everything else she battles, SPD has developed from it. She can't control her reactions to certain things. This pains me. PAINS ME. The turmoil within her is so much more than I ever could have imagined. My heart BREAKS for her. Her doctor said that likely, we will NEVER rid her of all of this. But, with some counseling and OT we can hope to get rid of SOME of it, and help her to cope with what's left. As I was leaving I texted a friend to tell her what happened. We are so close in our hearts, that she automatically knew how I was feeling. This is word for word her response, "One thing I thought of when ____ was given the asperger dx is that he is still the same boy he was yesterday before the 'label'" HOW TRUE?! She is still Jenna. Nothing has changed. Her heart is still hers and it is BIG. So we are off on another adventure her and I. Another war to wage, another battle to be fought, another mountain to climb. And wage, battle, fight and climb we will!!!

Ephesians 3:19-20

New International Version (NIV)
19 and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. 20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,

Thursday, March 8, 2012


It still continues to shock and amaze me, nearly 4 years into this, that people don't understand autoimmune diseases. I can't really blame them. If not for Jenna, I probably wouldn't understand either. That's why I am so very grateful for the International Autoimmune Arthritis Movement. Their SOLE purpose is to educate the world about these often misunderstood diseases. They are "staffed" with volunteers who work tirelessly and diligently. Thanks to them, hopefully one day we can all look back and say, "Remember when........"

Tuesday, March 6, 2012

Defining "Hardship"

 noun \ˈhärd-ˌship\
Definition of HARDSHIP
: something that causes or entails suffering or privation

I guess that overall, Jenna is one of the “lucky” ones. Her diagnosis of Juvenile Arthritis not only came at a young age, but it also came quickly. By being diagnosed so young, she really doesn’t even seem to realize that she is in any kind of pain or discomfort. It has become a way of life for her. Being diagnosed so quickly means that we were able to get it somewhat, not entirely, but somewhat under control before any serious damage could be done. That being said, isn’t that in itself a hardship? Being a child and not knowing a comfortable, pain free day? Of course she has all the typical hardships that any child with JIA suffers. The weekly injections, monthly blood draws, numerous visits to doctor’s offices, missed school, not being able to keep up with friends, needing to drop out of sports, being “different”.  But Jenna’s biggest hardship is being without her big sister.
You see, we were living in Maine when Jenna was diagnosed in 2008. Maine is one of many states in this country without a pediatric rheumatologist. In the beginning we were taking her to an adult rheumatologist that was willing to treat children. Being new to the disease, we thought that this was acceptable. Arthritis is arthritis, right? WRONG.  I am so fortunate that I “met” so many wonderful JIA Moms online. They “schooled” me on the importance of Jenna seeing a pediatric rheumatologist. The differences in adult arthritis and juvenile arthritis are so vast that unless specifically trained, there is no way to effectively treat the child. Her adult rheum said that he knew a fellow at Duke Children’s Hospital and he would speak to him about getting Jenna in there. Would we be willing to move? Or choices were as follows: Stay in Maine and travel to Massachusetts every time she needed to see the rheum, which at that time was every 3 weeks. Continue having her treated by the adult rheum, and watch her deteriorate. OR, pack up and head south. For us, there was no question. We knew that we needed to have her seen at Duke. They are renowned as some of the best in the country. It is a long and complicated story, but my oldest daughter was left behind with her Father in Maine and we still, nearly 3 years later, do not have her with us.
So, imagine if you will, being a 5 year old sick little girl, scared, in a new city, a new state, new school, new home, new friends, new doctors…..and not having the love, guidance and support of your big sister. That is Jenna’s biggest hardship. She is going through this fight without her best friend by her side.