A Langerhans Cell Histiocytosis story

I am a mother of three very active children. My husband is in the Navy and was stationed in CT. I had a bad hip pain and went t9 the Dr. They did an MRI and found nothing. A year later we got stationed on WA and on my trip across I started having horrible pains again and by the time I got to my sisters in WA I was on her floor in a ball and couldn't walk. I have a VERY high pain tolerance so I know something was wrong. 6 MRI's 5 x-rays, a nuclear scan and several other tests later my orthopedic Dr. Sent me to a bigger hospital and I was told I needed a biopsy and a tube put into my femur because they thought I had an infection. After sending my results to UofW they told me it was LCH. I had my femur replaced with a rod and plates to secure my leg until the new bone fuses. I now see an LCH specialist in Seattle who is testing me for it in other areas of my body.