It's so nice to be able to walk into a doctors office and not have to explain Neurofibromatosis. The health care we have been getting here in Colorado has been REALLY good.
I remember not to long ago, walking into my kids' doctor in a new city in Washington. The Doctor sat down and I unloaded a list of issues that my family was dealing with. "We have NEUROFIBROMATOSIS!" I said expecting him to know what it was I was talking about.
The doctor just stared back at me. "You mean Fibromylagia?" he responded. "No....I mean Neuro-Fibroma-tosis." I told him. "Ohhh ok, the Elephant Man Disease, right?" I was shocked, hurt and unbelievably confused!
We never went back to that doctor.
Yesterday, Braden and I spent half the day talking to NF specialists about the new findings in his latest MRI scans. Just a year ago, Braden was "stable" and showed no signs of tumors on his optic nerves. Now, he is presenting with a pencil eraser sized growth on his left optic nerve.
Plexiform tumors are scattered along his spine, causing balance and bladder issues. Dr. Handler looked at me and said...."In the 'NF' world...this doesn't look too bad." The 'NF' world?? I hate the NF world! But at the same time, I was grateful for the news.
We were sent off to Neuro-Oncology to set an appointment and meet with Dr. Rush, who also sees Bailey, for the tumor on her auditory nerve. We were told she would review Braden's latest MRI and would need to see him back in a few weeks.
I was feeling overwhelmed until I saw a family holding on tight, to their young son. His bald cute little head...his bright, wide eyes.....and His hand wrapped up, with an IV tube leading up to a bag of medicine. Chemo.
NF causes so many unknowns, I vowed to keep living in the moment. To make the most out of each and everyday that I have. This is the only thing I have real control over.
One doctor I had to spell it out as he was writing it down. Another time two young interns came into the room I was in, said, "We never seen a live person before with NF, we only have seen corspe". I came in here alive, I expect to leave here that way in 30 minutes. Do you have any questions for me? Then the doctor came in, needless to say, I never went back to that clinic again.
ReplyDeleteOnce, I went into a doctor to get some "tumors" checked out that came up in my MRI. When I walked in and gave him my history, he actually asked me what NF was, because he "Couldn't remember what it was"........ needless to say, I won't be going back!!!!
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