I have what's called Glomus Tumors. These painful little suckers are fairly common, with my disorder, Neurofibromatosis, but I have yet to come face to face with anyone else who has suffered from these things.
When I visited NIH, back in July of 2009, I had the privilege to meet one on one, with a doctor who specializes in Neurofibromatosis. I got to ask questions, and let every frustration pour out of me, about the health care I have gotten] . It was an amazing visit, and I had a lot of my questions answered.
During on of the discussions, Dr. Stewart asked me if I had any pain in my fingertips, or toes. I hadn't mentioned this to him, because I really hadn't thought it was related to NF at all....but to my surprise, it had everything to do with my NF.
I was sent for an MRI of my left hand and it was confirmed I had these tumors that a small percentage of NFers have. (Lucky Me...eh?) I was asked if would be interested in coming back to NIH to have the tumors removed....so, here I am, 6 months later and VERY ready to have this done!
A week away from the family is both a blessing and a curse. I'm scared to go and leave things here in Washington. Not that my family can't handle things...I know they can, I guess it's just the control freak inside of me that wants to be sure everything is handled for the family.
I will try to keep my mind on the task at hand, but I know, even being on the other side of the country, I will be thinking about my hubby and my kids here at home and missing them so much.
For now, I can enjoy the Christmas season, and soak it all in. Living for the moment, just like good ole Frosty the Snowman.
Merry Christmas Friends
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