Tuesday, September 24, 2013

What does this all mean???

So now we have a diagnosis for Bella. But the tricky part is that they have not done all their tests quite yet, so the exact type of Arthritis could change. As new ailments, aches, and pains show up it could point to a different direction, so we will see. In the mean time we are researching and talking to lots of people that have/had JA (juvenile arthritis). The doctor's plan of action right now is to take Naproxen( anti-inflammatory drug), Tylenol for pain, attend physical therapy 3 days a week, and rest the body when it needs to rest. The medications will change throughout the course of treatment as well. We also have restrictions for Bella, especially during school (didn't think it was that big of a deal, huh?). To my surprise (which brought on a new flood of feelings) Bella is now considered to have a disability. This little word made my heart break and it was by far the hardest thing to hear so far.
 As of right now Bella is not to carry any books to and from school, the school is to supply a 2nd set of books for home. She is limited to what activities she can participate in gym class, especially no distant running. She is to wear supportive, lace up/zip up shoes most of the time, which was quite heart breaking to my little shoe diva. The doctors gave in to those disappointed little eyes and told her she could have a "shoe vacation" IF she wore supportive shoes 5 days a week. A "shoe vacation" is wearing any shoe she chooses 2 days a week,(seems kind of silly, but it really is important to Bella). Any activities that are repetitive on her joints are also not permitted. Now this restriction gets tricky because she in cheerleading (with some restrictions too), the doctors believe that she should be able to do what she loves to keep her happy. So they asked her to quit gymnastics and compromised on cheerleading with restrictions. She cheers when she feels well and when the pain starts, she has to stop. Her restriction list will be tailored to her current conditions.
Bella wants to play basketball this winter and the doctor has decided that we will make that decision next month at her next appointment. The idea is to allow her to do things she wants to, but with the understanding that she may not be able to participate all the time.
We are trying to avoid damaging the joints, but also keep the joints flexible. It is so tricky to find a good balance. It's okay for Bella to run around at recess and play with her friends, but it isn't okay for her to run laps during gym....so confusing. But I get it!
The hardest part for Bella is being restricted because she LOVES sports, so now we are looking for new sports for her to try that are easier on the joints. The doctors have recommended swimming and Bella's response, "I already know how to swim, so no thanks." Yes, the doctor and I giggled at this one!

2 comments:

  1. Hi Bella,

    I know this arthritis thing is kinda crazy. I got arthritis too 3 years ago. It's very hard not to be able to do all the things that you are used to. And it's sort of frustrating, as no one can tell that you are sick, so they seem to wonder why you aren't feeling so well. And then everyone tells you what they think might help.

    What parts hurt the most for you? For me, it's my feet. My hands too, but not as much as my feet. There are slippers and gloves that you can get in stores that have microbeads in them--they can be heated in the microwave (be careful, they can get really hot!), but they help with pain.

    Make sure your parents have your vitamin D tested. I go to Johns Hopkins for treatment, and they have determined that a lot of folks like us with auto-immune issues have low vitamin D. So it would be good to check.

    You will want to set up a notebook that keeps all of your medical information and tests. Your mom can help with that. It's good to keep it all in one place. Also, it's good if your Mom has a smart phone to store appointments and contact info.

    Be sure to get enough sleep! That is very important. And pay attention to see if you feel more tired after certain foods, like dairy or wheat. Some people with auto-immune have problems with those foods.

    A nice hot shower in the morning can help with your day. For many of us, the morning is a hard time, so go gently into the day.

    Oh, and look for fat pens and pencils to write with! That really helps! Get Mom to buy you a really cool fat pen! I love mine.

    The one good thing about this disease is now you can get a special pass so you don't have to wait in line at Hershey Park. How cool is that? Be sure to plan to have a place to sit when other places aren't so nice and you have to stand for a while.

    Anyway, Bella, I just wanted to say hi. I was a teacher of JessiLee, and I heard about your diagnosis. A lot of us are out here with auto-immune issues, but you just can't tell (we look like everyone else).

    I am going to try a new drug, Xeljanz, in November, so I'm hoping that will make a difference for me. I will let you know. Be sure to take the medications that they give you, and notice if they help or not. Some will, some won't. And be sure to talk to your parents, and let them know how you feel. I know sometimes the aches are hard to describe, and the fatigue too, but it's important.

    Have a good day, and know that we are all hoping that you will feel better soon!

    Jill Craven

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  2. Thank you. I just found out this summer that I had arthritis but I had the pains for a long time. Today my neck and my hips hurt so bad. I just want to lay in bed with my mom all day. Today I had a hard time pulling up my pants because I hurt so bad. I hope your new medicine helps you feel better. Thank you for writing me a comment. Bye.

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