We had a busy but awesome weekend that included our 5K Fun Run/ Walk and After Party that was benefiting Bella's friend, Emilia. Emilia is the one battling Ewing's Sarcoma, a rare form of bone cancer. Bella and our family volunteered at the events this weekend and had such a blast. We love you Emilia!!!!!
As Saturday evening approached and it was almost time for Bella to start round 2 of chemo she brought on her skills of persuasion in hopes that we would post-pone her treatment. At one point she almost had us, but we help strong and began the treatment as planned with the new medicine to help with side effects.
The first part of Sunday she was not feeling so great and laid in bed reading. Though the new medicine helped with her nausea, it did nothing to stop her headache and exhaustion. We decided around lunch time to peel Bella out of bed and take her to visit Grammy and Pappy in hopes that it would take her mind off of feeling crappy. Half way through the visit she actually perked up and was being her usual sassy self. Which was quite a relief.
But then later that evening she had one of the biggest meltdowns I have ever witnessed. She was upset about school work and mad that she had to clean her room. Bella just had enough and totally exploded with frustration.
When I woke up this morning I realized that I often forget my daughter is "sick" and going through a lot and I shouldn't pile on the tough love too thick. I need find a happy medium for her until she gets use to all of this. Honestly, I forget she has JA because Bella doesn't spend her days complaining because she wants to try to be as normal as possible. Don't get me wrong, I can see it in her tired eyes and her limp down the hall each morning.
Honestly, I have been quite cranky myself lately because this is A LOT to deal with. My friends have actually brought it to my attention and I feel horrible. I'm not trying to be miserable, I am overwhelmed right now. Here is my public apology to my friends and family for not being myself, I am sorry. I am aware and trying to fix it, so please bear with me. It is hard to feel so helpless and know that your daughter's health/well being is in the hands of doctor's/insurance companies.
The mounds of paper work for insurance, school, and doctors are overwhelming. The insurance company has been the biggest headache for us right now. I got a bill in the mail for one physical therapy visit for $170 because the insurance company denied it, after they approved the visits. IT IS FRUSTRATING!!!! She attends these appointments 2-3 days a week. I am sure I will get it sorted out BUT not without a struggle and a huge headache first. What makes me so mad is that the physical therapy is one of the things that will truly help my daughter from spending most of her life in a wheel chair (which could cost the insurance a ton of money) and they want to deny the preventative care. I actually dread getting my mail each day, thank you health insurance! ;)
So, we've updated the doctor as they asked and we wait to hear back from them. I sent Bella to school for a half day in hopes that her friends would help make her feels a little better.
Thanks for checking in on us......we are surviving, just a little crazy right now. =)
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