The Words Beneath My Fingertips

Hi beloved readers! I can't believe I haven't updated since January, 2015.  I last left you with my blog about getting ready for the 2015 undie run. I am sorry I don't wrote anymore. I have a lot less time now between working and parenting. So I'll try to be better. So 2015 was a crazy year. Boston not only got pounded blizzard after blizzard (which slightly affected the run) but it was also SOOO cold. The day of the undie run, we had survived our 4th blizzard (2 ft each), it was about to snow again, and it was freezing. Well, that day was a warm spell (20 degrees), but it was 10 degrees with the wind. The rest of that month we had -4 degree days. The subway line I live on had shut down for a month due to all the snow...it was miserable. But the run was fabulous! Before the run... warming up.... During the run...along Fenway Park Stadium...lots of snow With the Great and Wonderful Anne Shigley Noble- an amazing NF2 enderer! <3 I ...

Hello beloved friends- It's that time of year again- the Cupid's Undie Run ! I ran two years ago in DC with my dear friends (Team Captain Liz who rain in the inaugural run on behalf of me). Last year I couldn't run because I was just barely a month postpartum. (So it was a good excuse!) This year John is joining me! It's going to be a blast. A Freezing Cold Blast! This time we are running in Boston instead of DC. Yeah, it will be much colder. :) The race is Saturday, February 14.  If you're around, you should come cheer us on! We'll be running around (and inside!) Fenway Park! If you are able, please make a small donation . Every penny counts! NF is a BEAST to live with. We are hoping this money will go to some good research to find a cure. In September, John and I raised nearly $500 for research for the NF Walk in Putnam. We went as the NF Exterminators (We are Whovians) and made makeshift Dalek headgear. For the Undie Run, we are on the team The ...

I always seem to be inspired to post a blog entry absurdly late. Maybe I'm channeling my inner student - writing papers between midnight and 3 am... DISCLAIMER: I 'm exhasuted so please excuse the typos, poor word choices, missing punctuation, extra punctuation, etc .......... This is all over the place but I divided this blog with updates PAIN I started this blog because I wanted to write about the trials and tribulations of living with NF1, particularly the pain it causes me. My pain disappeared during my pregnancy. I got pregnant in May of 2013 and the pain stopped by August. I was PAIN FREE in my pelvic region (where my most bothersome tumor is) until June 2014! It started off pretty mild, and now it's back to 100-alarm fire pain. I'm back on my pain medication, and slowly my tolerance is building back up...which is good because it's incredibly depressing and upsetting to pretty much be conked out when I have a baby to take care of. Thankfully, John i...

If the weather gods are nice, my husband and I will be flying to DC tomorrow morning for The Cupid's Undie Run! I raised $1,013.50 for the Children's Tumor Foundation and I am psyched. However, it's supposed to blizzard here, so I'm worried about actually getting out of here....we'll see! Anyway, still getting used to the oxycontin+ tramadol mix. I am less jittery as I was, however, 5+ days on tramadol and I get car sick EASILY. I've never gotten motion sickness on a bus before, and I had it BAD last Friday. I was almost in tears keeping myself from throwing up. I wouldn't have VOMITED per say- it would have just been acid reflux. I've had a break from the pain, so I don't know if this will be long term. I'm worried this will be a constant side effect. :( and Zofran doesn't work. I will update after the Run with lots of pictures. Stay tuned!

When I last wrote, I told you about being a Nucynta trial. Nucynta is also a narcotic, but it does not have the same side effects (supposedly) of oxycodone. When I was taking oxycodone, I was extremely constipated. It would make my body itch. I would scratch myself to sleep. It made me drowsy and nauseous. Nucynta was supposed to be better. It wasn't.  I had said that the 50mg trial did not work, so I was put on the 100mg pill. This worked better than the 50 mg, but it still did not truly take away my pain. I was also still constipated (and when I talk about constipation on here, I mean it's bad- I don't use the bathroom for weeks and I gain up to 6 pounds just from being...full and stuck). Despite all of this,  I was actually going to be ok with doing the 100mg, because some relief is better than none. But when I saw my pain doctor on January 4th, she was quite surprised even the 100mg Nucynta didn't work, so she wanted me to get off of it. FYI- it's easy for me t...

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 ...