The Words Beneath My Fingertips

My best friend/sister-from-another-mister, Liz, ran, for the second year in a row, on behalf of me in the CTF Cupid's Undie Run in DC. She raised almost $1,300 for NF research!   This was her last year, in mid run: She flew us down to DC so we could see her run this year <3   I wanted to get her crossing the finish line- it was all sort of confusing and fast. And I failed.  But this was her with "Teddy Roosevelt" And with me and me again! A lot of tourists took this photo too. We're pretty famous now. We are going to run with her next year! (yes, that means John, too!) I thought I took a video of the entire start of the race, but I never hit 'record'. I only have the last 11 seconds of it. Double fail. So the first part of the video is the last 11 seconds of the start of the race, and then a few seconds of the commotion AFTER the race: And so everybody knows: Liz is one of the most beautiful and generous people I ...

I have an optical glioma with atrophy (a benign brain tumor that is very very slowly eating my optic nerve), so I see a neuro-ophthalmologist every year just so my vision can be monitored. It will be very unlikely I'll lose more vision than I already have, which is a good thing, but it is good to be kept monitored just in case!  Anyway, my eyes also reveal a very common characteristic of NF1- Lisch nodules. These nodules are basically raised freckles. Every time I see my N-O, he brings in residents just so they can look at my eyes(and so they can oooh and aaahh) . For as long as he's been a N-O (which is at LEAST 30 years and he's really really really respected in his field- one of the top N-Os in the country), I have the most lisch nodules he's ever seen. I guess that makes me pretty cool! The picture of my eye shows my nodules. They can be easily seen with a flashlight or in direct sunlight. This is my right eye. My left eye actually has MORE nodules! (My righ...

Whatever's going on with my nerves- whether its truly damage to the ilio inguinal nerves that I described in this entry , or if a new NF tumor is eating its way through me like a termite, is really starting to dampen my hopes of EVER getting better. I really thought my surgery to remove that other NF tumor was going to help, when in fact, it might have made things worse (since abdominal surgeries are often a cause of ilio inguinal nerve damage). My worst fear might come true: having to take my comprehensive examination in March while dealing with a bad pain spell. I don't know what to do! Blahh. Just wanted to vent.

This is just a small post to thank everybody for their support of me. Without a wonderful husband who rubs my pains away, without my friend Liz who is running her second Cupid's Undie Run on behalf of me (and who also kept my husband company while I was in surgery last August), and if it weren't for my good doctors and my friends and of course my FAMILY who weren't there for me, I don't know what I would do. I am constantly grateful for your support- you listening to my whining, etc etc. I see my new obgyn soon (the 18th) who will hopefully shed some light/insight on my ilio-inguinal pain and how I can deal with it.  I am positive this started slowly with the NF tumor near or on my genito-femoral nerve, and then got worse with surgery. I'll see. At least I have a new pain doctor who wants to help me through this too. Anyway, if you were brought here from Liz's link on her donation page, feel free to ask me any questions! Take care, much love!

John and I have been together for 10 years, married for almost 5. Since we moved to Boston, we've always been so busy. Sure our first few months we explored (went to the aquarium, explored the North End, shopped on Newbury Steet, walked around EVERYWHERE) but after that life got busy and, other than when people visited us, we never really did anything fun. So we vowed TO DO NEW THINGS: either do things we've been wanting to do and never got the chance, or be spontaneous and do something different.... not really a big deal but we still had fun. We'll continue this tradition and hopefully be more INTERESTING. Oh well, here is what we accomplished: January: we hadn't changed our main shower curtain SINCE WE MOVED HERE IN 2007. Sure we changed the lining, but never changed the front curtain. The old curtain was ripped thanks to the cats. So we bought a new shower curtain and a new bath rug. Before After. The new bath rug was WAY smaller than we thought when we bou...