So many of my NF friends have been suffering from various problems lately And by"Lately" I mean 'Every day". We all do. Chronic pain, itching, tumors, vision problems, all of it. So what do we do when we go to the doctor, thinking "Hey, he's a doctor, of course he'll help me!" Only to be told that your "pain problem" doesn't exist for them and they refuse to do surgery. HELLO!!! Anyone out there? Anyone listening!?
Apprently, the NFers are the only ones listening, and we are not happy.
I'm so sick of this. I'm sick of my friends suffering, and their kids suffering from stuff doctors can't ''see'' so obviously they can't get their big doctor head around it.
It's a tumor right in front of your face!! It doesn't MATTER if it isn't cancer (yet), it causes pain! It is THERE. Doctors are happy to pump you full of pain pills, but God forbid you ask them to use their doctor skills to help you.
I'm sick of the ignorance of people who don't understand NF. It's a shame when doctors can't even spell or pronounce the disorder.
I was six and I could spell the damn word. N-E-U-R-O-F-I-B-R-O-M-A-T-O-S-I-S! Spelled the way it sounds, people! If a girl like me with a speech impediment can say it, I'm sure you can wrap your lips around it.
I'm sick of insurance companies. I've been having trouble obtaining insurance for awhile now. And god forbid I USE my insurance that I pay for to get the one MRI I need every 5 years. Actually, who knows how often I need an MRI.
My very former Neuro Doc was so ignorant about the disorder that I don't even know what could be wrong with me. This woman told me that the bumps on my head were "Pimples" Um, yeah, it's called NF, Lady, maybe you should look it up sometime. And laughed and told me I need to "cut back on the caffeine and maybe not have such a tight ponytail" when I told her I've noticed more frequent headaches.
You asked me how I was feeling, I tell you and you give me reasons that are not only insulting, but make you look like a moron. Sorry, "Neuro Doc", but judging from your degrees I assumed you were a doctor from a good university. My mistake! By my calculations, it's costing me over $12 a minute to sit in front of you being told it's pimples. A ten minute appointment. Not counting the hour in the waiting room.
And my NF is mild! What about my friends who have NF much worse than me!? My friend's daughter, who needs brain surgery and is having so much agita? If I'm struggling to be heard, what about her? My friends with actual tumors? If I can't be heard, what hope do they have? What hope do any of us have? It's a progressive disorder. Can you understand how that makes us feel? I don't know how I'll be in one year, the rest of my life doesn't exist for me till I get there.
Which is why NF research and promoting understanding is so important! Maybe one day, their kids will grow up in a world with so much better treatment, maybe a cure. This is why I have been such a pain about NF this month. It is NF Awareness Month and this one ranting post is only the tip of the iceburg that is NF. A little sliver of what we go through, the struggle to be heard by doctors and evil insurance companies.
If you read this, maybe you'll start to understand.