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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.

Tuesday, September 20, 2011

Is it too much to ask?

I just want her well. I want her to know a day, a full 24 hours of feeling WELL. I know that she can't remember what it's like, because lately, I can't even remember it. I can't remember what she was like before she got sick. Was she always this angry? Was she always this emotional? What were her habits? Did she always act this way? I feel like I am mourning the loss of my WELL child. Now, do not get me wrong. I do realize that she is much better off than some children, I get that. But some days, that just isn't enough to soothe the ache that is in my heart. I WANT HER WELL. Is it too much to ask? I used to pray for, hope for remission for her. Remission you say? Like cancer?? YES, remission, like cancer! Because, like cancer, Juvenile Idiopathic Arthritis has NO CURE. So, as of right now, all that we can hope for is remission. As of right now, she can never be 100% rid of, cured of this disease. This disease that encompasses and endangers her entire body. At the JA Conference this Summer I got a new perspective on remission. I was able to meet many teenagers and young adults that have never known remission, yet are leading full, happy lives. I then realized that if Jenna never went into remission, as long as she was happy, I would be okay. Well, today I'm not feeling it. Today, I WANT HER WELL. Is it too much to ask??
Today I feel like screaming as loud and long as I can until I can make people understand what we go through. Today I feel anger and resentment at the hand we've been dealt. Tomorrow is another day...

Thursday, September 8, 2011

2011 Charlotte NC Jingle Bell Run/Walk For Arthritis

A few months back, I got an email from our local Arthritis Foundation office asking me if Jenna would like to be the Youth Honoree for the 2011 Charlotte Jingle Bell Walk/Run for Arthritis. WOW! I felt so honored that they thought of my girl. What an amazing opportunity for us to do what we are so passionate about, raising awareness that kids get arthritis too. At first Jenna was not thrilled about this. She is a very shy, introverted child. She does not like any attention drawn to her. At the JA Conference she seemed to gain a bit more acceptance and understanding of the disease. Somewhere along the way she has also gained some sort of self assurance, some confidence maybe? She is apparently performing songs and dance in her kids class at church. She is very excited about a concert at school in which she hopes to be chosen to play an instrument. She has also gotten excited about being the Youth Honoree for the Jingle Bell Walk/Run. :o) If you would like to donate, join our team or form one of your own, you may do so at

The Eyes

 So, the GREAT news is that her eyes remain inflammation free! I am still so stunned by this. That means that since December of 2009, the Uveitis has not acted up for her. That is incredible given the difficulty we had getting it under control. The combination of Humira plus Methotrexate continues to keep her eyes healthy. It amazes me, it brings me great joy, yet I can't help but also feel a bit of guilt. You see, it isn't so easy for everyone. There are still so many little ones that struggle to find the right combo of meds to tame this beast. I hate that. I feel so lucky, so very blessed. And again, I must stress, to ALL of those that doubted and STILL doubt our move down here, had we stayed in Maine, this would NOT have happened.
Since her eyes are still healthy, we are not comfortable playing around with her meds at this time. Despite the fact that her joints continue to flare off and on, it just isn't worth the risk to her eyes to play with the meds. I called her rheum office and scheduled her 3 month follow up and asked that the nurse please speak with Dr. V about keeping meds the same for now. I got the call back before days end. What a relief, she is FINE with keeping her on the MTX and Humira for now and we will see how she is at her appointment in November. PHEW!
So for now we wait and see, again, what this disease will do. It is so hard to just let things be. To not be hyper vigilant, always on edge, questioning every little thing. I don't even know how to explain it to someone with a healthy child. But, for now, I am going to just let things be as they are. I am going to try not to ask her every morning, every afternoon, every night, "How are you? Are you okay? Are you sure?" I need to back off. I need to TRUST that if something is wrong, she will tell me. We'll see how this goes.
She was so upset about missing art class AGAIN this week. It's her most favorite enhancement class. What a pleasant surprise this was. The Art Cart was out at Duke Eye Center. :o)

Friday, September 2, 2011

SO glad that's over with....

The last time that Jenna saw the rheumatologist at Duke Children's Hospital in July, Dr. V not only detected a flare in Jenna's right ankle, but she also suspected jaw involvement. This REALLY had me worried. I don't know much about arthritis in the jaw, but what I do know is that it is difficult to treat, there is much controversy not only on how to treat it but if to treat it, and without treatment the jaw will likely deteriorate. The ankle I could deal with, the jaw I could not. An MRI of the jaw, done under sedation was scheduled, as well as a follow up with Dr. V. (side not: at this appt in July, the opth found her eyes to still be clear. YAY!) We went back up to Duke this past Wednesday the 31st for her MRI and follow up with Dr. V. What a long day that turned out to be! A 10:00 MRI turned into a 12:45 MRI. A 1:40 appointment with Dr. V turned into a 3:30 appointment with Dr. D. *insert sad face* We really wanted and needed Dr. V. Lesson learned, speak up for what you want and or need at the doctors. The amazing news of the day is that the MRI showed no current jaw involvement and no deterioration from past jaw involvement! OH PRAISE GOD! Okay so, Dr. D examined her, while she slept, and couldn't find any signs of active arthritis. Hmmm....just a month ago Dr. V detected a flare in her ankle, 3 weeks ago at home she was hot, swollen and in pain in her knees, wrist, ankle, elbow and hip. what's this all about?? Dr. D also mentioned that in Dr. V's notes from her July appointment that it may be time to switch meds. Ooooookay, she didn't say that out loud, just put it in her notes. Lesson learned, ask for a copy of notes. So I am still more than a little bit confused as to what is going on. Is she flaring? Do we need to switch meds? If it isn't a flare, then what is with the swelling and heat in her joints? At this point we are waiting until we can get her eyes checked by Dr. W. We will be making the trip back to Duke next Wednesday for that. If her eyes are flaring then there will be an immediate phone call over to Dr. V and we will go straight over to see her. If her eyes are quiet, then I don't dare switch her current meds. Increase yes, switch NO. So, we wait.....again. If nothing else, these crappy diseases are certainly teaching me patience.
Lets recap lessons learned this week:
* Speak up and get what you/your child needs/wants from a doctors visit.
*Ask for a copy of all notes from all visits
*Always expect the unexpected. You can't prepare yourself for these appointments.
Tell these NOT look swollen to you??