The Words Beneath My Fingertips

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

In case you are interested, I posted an entry following up from my blog in OCTOBER regarding NF's effect on my pregnancy. It is here . This entry is being dedicated to my 6th month as a MOM. For those who have spoken to me in the past about having kids, many of you know that I didn't think I wanted to have biological children. I thought about this for two main reasons: 1. I have NF 2. I had CANCER. I didn't think my body could be healthy enough. I was afraid to birth a genetic mutant like myself. I was just afraid of everything. Well, I changed my mind. And I did so for several reasons but the main reason was that I really wanted to have the experience of being pregnant and having a child of my own. Other reasons included: despite my pain, despite my cancer history, I still have a great life. If I  have a great life, my child would have a great life. I'm not sorry to be alive, so why would my child if he happens to have NF? (or any other condition). His life w

I wrote an extremely long post in early February, filled with pictures, etc. But then for SOME reason, it did not post. Since then, I have been too busy being a mom to rewrite it. Fast Forward to JULY - finally time for an update! I added a page to my blog, which has pictures of my new outer fibromas across my back and belly. If interested, it is here . Without going in excruciating detail, here is the 411 on the rest of my pregnancy (which was a pretty fabulous pregnancy until the end). 1. New fibromas grew 2. My facial tumor swelled, leaving me in indescribable pain. I could barely speak and had to keep cold compresses on my face. 3. What I thought was my baby's foot constantly in my right in my rib cage ended up being a swollen liver.  I had HELLP syndrome! (only from elevated LFTs- they were at 220 when the normal range is 30-40!   in my last entry in October, I was explaining one of the effects of NF on pregnancy is preeclampsia. I left you last with being on th