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Thursday, February 7, 2013

Coming and Going

I had two very tolerable days today, and now the pain is back with a vengeance.  Oh well.  Doesn’t help that I am looking at about $800 in bills and that’s not counting everything else you need (like food).  And one of my drugs is no longer covered by Medicare.  That’s two now.  I had another knockdown fight with Comcast, those vultures.  They lie through their teeth, leave out information, tell you what your bill will be and say the word “total” but forget to mention taxes, which increases the total by about $40 each month.  I always tell them “Total with taxes” when working out a plan.  They are a monopoly where I live and I’d drop them in a NY minute but it is unlimited long distance and where I live, its long distance to call my brother and sister, who are about 30 miles from me.  My home health care went up, my dental insurance is due and it’s time for me to have an eye exam.  My eyes aren’t good and I was thinking about making an appointment when I got a reminder in the mail that it was time.  One of us must be psychic.  Or psychotic.

So this week “Bones” did an episode that mentioned NF.  They got the facts right, but they made it appear like only children where effected (showed children, complete with scarves on their heads, in some sort of hospital ward) and that they were all near death.  At least they said it was more common than a lot of other disorders/diseases.  Of course, NF is not a disease, it’s a disorder.  I do wish they would have mentioned and shown adults with NF.  All that mis-information is what keeps it in the dark.  But I was glad to see it tackled on television.  I got a notice from CTF about it; otherwise I wouldn’t have seen it.  And I understand that changing the name from Neurofibromatosis Foundation to Children’s Tumor Foundation may bring in more money with the word “children” in the heading, but adults should not be swept under the rug, either.  Showing someone like me, living in horrific chronic pain, or someone like one of the people who posted a response on Facebook, saying her husband left her because she looked so awful with all her tumors (I have a male friend whose wife left him for the same reason) is important.  People need to get it about NF.

I am so wound up today I could scream.  Between all the fighting with Comcrap and finding out another prescription isn’t covered I’m a tad over the top.  See, that’s another thing I used to hear all the time.  People would tell me that everyone has these challenges and I need to relax and chill.  Well, everyone does have those kinds of challenges, it’s true.  Not everyone has them coupled with demonic, mind numbing pain.   Throw that into the mix, and the fun is just beginning!   But, I listen to my drumming, read, watch a movie (Netflix, not Comcast) and try not to freak out and go dark.

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