Bella vs Arthritis: Holidays equal the perfect distraction! Back to reality this week.

I have to say that the past week and a half has been a breath of fresh air for our family. The time off school and visits with family and friends over the holidays was the perfect distraction for ALL of us. Bella was feeling okay and had no HUGE complaints until this past Saturday night when she woke me up in the middle of the night with ankle pain. If you have a child with JA or an auto immune disease you know that they have pain/side effects everyday but get use to dealing with most of it. Which is why I find my daughter to be strong in ways I could never image. But as my one friend said, "You never know how strong you are until strong is the only choice." Let me tell you, it is so true. Bella and our family has had to really step up and take on changes and obstacles we were never ready for or expected. Yesterday I normally would have planned a fun activity day for all the girls but we had to spend the day at the hospital while her sisters stayed at home watching movies on their last day of school vacation. I was just telling a friend the other night that I thought we were cursed with this stuff with Bella. It has truly been so tough to deal with, I know it could be worse, but let me tell you some days I feel like throwing in the towel. I try to believe that we are only given what we can truly handle in life. I still ask everyday, "Why Bella?" The reason I feel she was cursed is because she loves gymnastics and is insanely flexible but now has a disease that is attacking the joints that allow her to participate in gymnastics/cheerleading. She is double jointed and can hyper extend her joints too. But if she continues to participate in what she loves, it sets her up for disaster in the future......if that isn't a curse I don't know what else is? To avoid surgery and the possibility of a life in a wheel chair we have stopped gymnastics and do cheerleading with restrictions. I see the heartache in her eyes when her friends are doing the things she loves, it's hard. When her friends started basketball this season and she couldn't because they can't get her JA under control, I watched her heart break again.

Last week Bella developed a new rash, which is a part of the JA and the doctors are monitoring it. She also had started to have pain in a new area of her body, chest. We learned that you can have arthritis in the cartilage that connects the breast and rib bones, which is called costochondritis. We also had Bella start journaling about her JA last week, that way we can keep track of her symptoms. She is keeping a log of pain, symptoms, and new changes in her journal. That way she doesn't have to talk about it all the time because she hates to talk about it.

To my surprise Monday morning on our way to Hershey Medical Center to get tests done, her Rheumatologist called to check in on Bella (reminds me how AWESOME her doctor is)and let us know of changes she wants to make. They want to add another medicine to the mix that helps reduce side effects from the chemo drug and wanted to get Bella in to see a GI specialist sooner than later. Another part of JA is the damage it does to the GI system, so we also had a consult with a GI doctor yesterday afternoon in Hershey (they seriously got us in the same day they suggested a visit, AMAZING). Bella is now scheduled for Upper Endoscopy and colonoscopy for the 19th of December. Bella is quite nervous about being put under anesthesia because she is afraid they won't be able to wake her back up. I assured her that this is a common procedure and she will be fine. The doctors are testing her for Chrone's Disease and Inflammatory bowel disease, both are common with kids with JA. We are nervous and anxious all at the same time. The sooner we get answers, the sooner we can plan our next round of treatment.....all of this is to work towards remission.

We thought we had escaped most of the side effects of the chemo injections until yesterday. When Bella informed the doctor of her mouth hurting and we found out that she is developing sores in her mouth(common side effect) and her hair is thinning. Not a happy 10 year old yesterday.

This week we have a total of 6 appointments for Bella and it will keep us quite busy. We are also preparing for the Christmas holiday by decorating our house, baking cookies, and wrapping gifts. Of course Bella has her list for Santa which includes the wish for a laptop or Kindle Fire, clothes, shoes, board games, hair dryer, gift cards, and jewelry. All the typical pre-teen wants.

We will have lots of updates over the next few weeks as we plow through the upcoming pile of appointments. Hope you all had a wonderful Thanksgiving holiday, the Anderson family did!!

Stylish gown