Anxious for tomorrow.......

I have never been one to wish my life away, but right now I want it to be tomorrow so that we can get to Bella's appointment with her Rheumatologist. Having a couple of months to read all the information given to us and do some research on my own, I have questions I need to ask. I know that auto immune diseases aren't cut and dry, which means there will be a lot of possibilities......but I want the doctor to help us understand these possibilities. I just read that Bella only has a 17% - 37% chance of reaching remission......SIGH
Bella is still struggling with daily pain, taking all her meds without a fight, attending physical therapy 2-3 days a week, and has tailored her activities to help her aching joints. BUT, nothing is working right now. Each week she is missing school either because she hurts too much when she woke up, couldn't make it through a full day of school because of the pain, had bad stomach aches from the medicine,  or just felt overly exhausted. That doesn't include the appointments she has to go to each week. I hate that she misses so much school and so does Bella. More than anything, I hate to see the emotional toll it is taking on her right now. She has changed a lot over the last couple of months and I feel like she is angry at the world. Who wouldn't be angry when they feel as if all the work they are doing is producing no positive results? Bella tells us that she doesn't think the medicine and physical therapy are helping and she is disappointed. Eventually they will find a medicine that works for her, unfortunately it is a trial and error system that needs to be used. We let her know that the PT is meant to help keep her joints mobile and without the therapy she could end up not being able to walk. The PT is not meant to cure the disease, just make it more manageable. This week at therapy we asked if Bella could walk an upcoming Diabetes Walk we are doing with her friend, Noelle, who was just diagnosed with Type 1 Diabetes. The therapist doesn't like the idea because they are worried about her causing more damage and increasing pain. But, those cute, little, disappointed eyes got a compromise; she can walk some and use her electric scooter for part of the walk. But was warned that if she is hurting she needs to stop and rest her joints. We are so excited to support Noelle and spend the day with her family. It's so nice that the therapists and doctors understand that it is still important for Bella to enjoy her life and find ways to make these things happen even when the disease is winning. I feel like so much is being taken away from Bella right now and all we want is to provide her with the most normal childhood, but now our "new normal" is different. We have gotten very creative with Bella and we are now exploring different avenues for entertainment/activities for her (and our family). I never imagined that I would be thinking about changing plans because we already have an event that will require a great deal of walking and could possibly keep her from doing much the rest of the week. Unfortunately, that is the nature of this disease. Every day is a mystery and each day she wakes up I wonder what the day will bring for her. Yesterday she had a very mild pain day and only complained about arm pains, but woke up today with a lot of pain in her back. I am glad now that I decided to keep Bella home from the local parade (which brought on a huge fight with Bella), because today could have been much worse if she was out in the cold and pushing her joints. One day Bella will thank me for protecting her but for now I am the mom that is ruining her life (yes, her exact words). Tough love sucks, especially when your kid is fighting a battle like this....a forever battle.
P.S. Bella hasn't been on her blog much this past week, I am sure once she logs on herself she will respond to all your comments. The blog is here for her to use when she wants to talk about JA.