The Words Beneath My Fingertips

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 ...

Hello to my few but loyal readers. This blog will be long but worth it if you are thinking of having a baby and not quite sure what to expect. Well, at least I hope it's worth it! Please note- most of this stems from MY experience- I do not claim to be the voice of all pregnant women with NF. For those who follow me on Facebook you have been following my pregnancy. To the few who just catch my blog between entries- well, I'm pregnant! And it's a BOY! I actually knew when I wrote my last blog about the wellness group (back in July) but I was waiting until I was 13 weeks before saying anything. All is well so far. Here are my ultrasound pictures to date: (note- the ONLY good thing about being high risk is the # of ultrasounds haha) 6 Weeks! 11 weeks! 13 weeks! 20 weeks, 3D image of his cute face! 24 weeks! For those who do not know, when a parent has NF, there is a 50% chance to pass that gene to their children. I've known and understoo...

It has been over two months since I last updated! First of all I have to say that I am feeling MUCH better now than I was when I wrote an entry. That was one HELL of a pain spell. It didn't go away for a month. It was hell. And Narcotics gut is definitely also hell. But I gotta do what I gotta do. Haven't needed to take any for a long time, so maybe that spell bought me some pain free time haha. When I do have pain though (it doesn't last so long), it centers on one new area only. A little concerned about that, but we'll see what happens... I have headaches off and on which are similar to headaches I had when my facial plexiform grew. When I cough or open my mouth wide, I feel a strain on my  head right above my temple. This is where my skull has been 'facelifted' from the plexiform. It's a little disconcerting. My next brain MRI isn't until December. I joined an NF support group. It only meets for a month.  My doctor wanted me to do it. It's...

Please allow me to vent for a page or 2.  It's past 3 am and I've been wide awake ALL night. I'm in SO much pain, and I can't seem to keep it under control. Pain meds seem to only knock me out (or make me extremely drowsy) during the DAY but at night, I'm not tired at ALL. I wish my body would just work! I can't believe I'm so wired now when I was dozing off at dinner. It was an important dinner too...John surprised me with reservations at a nice restaurant since it was our 11 year anniversary of our first date! I didn't want to be sleepy then. I wanted to be sleepy FIVE HOURS AGO. When going to bed, despite taking a pain med, and despite being tired, as soon as I put my head on the pillow, my exhaustion disappeared!!!!! The pain just keeps me up and even though the medication helps for a short period of time, I'll either itch, or I'll start thinking about work. I try to do relaxation exercises but they keep me awake! Becasue ...

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...