A year ago today my Starfish and I boarded a plane and flew to Boston. At this point it had been the worst year of her life. In January she had been diagnosed with Fibrous Dysplasia and we spent the next 8 month’s begging her specialists for anything to relive her pain. We were told there was nothing they could do, that they had no idea about her disease… You name it we heard it.
The final straw was having an endocrinologist look me in the face in front of my child and tell me she was not going to see her because she didn’t know what was wrong with her. She never even looked at her chart, I had to explain not only her symptoms but what FD even was. It was truly the straw that broke the camels back to see the look on my child’s face. I was tired of failing her and allowing professionals to not only fail her but to not even care that they were.
So with the help of my friend Sammi’s mom, we found a specialist at Boston Children’s Hospital who wanted to see Starfish for a 2nd opinion exam. With help from some friends and Hospitality House, we had a flight and lodging for a 2 week stay in town so we could get everything we could stuffed in that time. Hopefully we would go home with a treatment plan.
So we spent 2 weeks in Boston; seeing doctors, having tests and visiting with friends. I was finally granted a bone scan, something (along with a biopsy) that I had been begging for all year long and ignored about. Turned out she didnt have Fibrous Dysplasia. She had equally rare Chronic Recurrent Multifocal Osteomyelitis, or CRMO. We were given a treatment plan, instructed to see a Rheumetologist and implement said plan.
We returned home with answers but mostly relieved because we had a plan. My point in this is that whether it is you or your loved ones… ADVOCATE! It is sometimes the only way to get somewhere. You have to be willing to move mountains and yes, sometimes be assertive to get things done. Remember doctors are human and in so are not perfect, they don’t see all you do. I know my daughter best so its my job to get them to understand when otherwise they can’t.
I’m sure they think I’m a pain in the ass sometimes and that is ok. I know she is where she is now because of the choices I made a year ago. I’m also teaching her so in a few years when she is an adult and out in the world alone, she can advocate well for herself.