Friday, November 20, 2015

Spoiler alert: JA is still in the house

Yesterday at Bella's 3 month check up at the Rheumatologist I was quickly reminded that JA is not leaving anytime soon. When the nurse asked Bella if she was in any pain, she immediately responded with a "yes" in my knees. The nurse asked her to rate it from 1-10 and she said 5. That number and response slapped me in the face, not because it was the first time, but because it is constant response. I instantly felt overwhelmed for Bella because I could not imagine a life of constant pain. Waking up everyday in pain sounds awful for a 12 year old girl. I hate when I have a sore muscle for a couple of days and my daughter has been living in pain daily for YEARS!! A good day for Bella is when ONLY her knees hurt because many days she has multiple joints in pain. It takes a strong person to wake up everyday and conquer it like the pain isn't there. To put on a smile and rarely complain to people about her problems, that takes super powers. We have days where it is too much for Bella and it feels like a battlefield of emotions at home. We try to keep Bella positive and hopeful for the future. Lately, Bella has been quite discouraged and struggles with the real truth... There is NO CURE for Arthritis and the end is not in sight. The Rheumatologist does a great job at offering us different treatment plans to try and keep Bella the most comfortable. We even allow Bella to have a decision in the treatment plan. The most discouraging words we have recently heard from the doctor were, "This may be the best it ever gets for Bella". To know that the treatments that helped other children go into remission, did not have the same effect for Bella. But the one good thing is that her disease is not getting worse right now, it's just not getting better. We tweaked her medicine bit and increased her dose of steroids (roid rage alert) on a trial basis per Bella's request. We'll see what happens until our next 3 month checkup. We added two new doctors to the mix; a Dermatologist and Neurologist. She has been diagnosed with Psoriasis and they are tossing around adding Psoratic Arthritis to Bella's list. But we aren't rushing into anything until we try a few skin treatments. We have quite a few appointments in December for new tests and regular maintenance. So we will keep fighting for a cure and if you'd like to help come join us at the Jingle Bell Run on December 12th. Join Team: Bella Mia http://www.jbr.org/faf/search/searchTeamPart.asp?ievent=1139398&lis=1&kntae1139398=4C49ABC4C6154751A57329A98D0EEDDD&team=6583613&tlteam=6383374 Here is a picture of Bella at her 15th infusion today

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