The Words Beneath My Fingertips

So last month, I posted a rant on my trials with pain and the difficulty I have speaking with my doctors about increasing my pain medicine. I have been slowly increasing my Lyrica. I started by taking one at night, one in the morning and one at night, one in the morning and two at night- now I am at two in the morning and three at night. On Tuesday, I met with my pain doctor and told her everything I've been feeling 1- I'm not sure Lyrica is quite working since it's too early to tell 2- Oxycodone has become ineffective for me 3- I would like to try a stronger pain medication so I can take it LESS frequently. Thankfully my doctor did not meet these requests with adversity. This was her suggestion: 1) my I am taking a lose dosage of Lyrica, and that I am allowed to take MORE than prescribed during my pain spells i.e, three in the morning, three at night and possibly one or two mid day. And to see how that helps. NOW I'm taking 2 in the am 3 in the pm. So it'

I am in soo much pain. Last month I started a new medication called Lyrica. If you watch TV (and you are in the USA), you know that it's used for fibromyalgia. I have many symptoms for that, but I don't have the 'tender spots' that generally go with it. I had been on Gapapentin but 1) it ballooooned me in weight 2) it gave me the worst brain fog and 3) it didn't help my pain. it helped other thigns like tingling, and when i was recovering from surgery last year, i had the worst burning nerve pain and it helped me then! But not for the pelvic pain I have now.  Last month, before I started Lyrica, my pain was astronomically bad. Way worse than other pain spells!!!  My pain medication  (oxycodone) did not help ONE bit. Out of desperation, I took more than my dose said- nothing. And for you freaks who make me feel like an addict when I talk about taking oxycodone- I took 2 5 mg pills every 2 hours for 6 hours (I generally would take 2 every 4-6 hours , with ONe pill e

Every year new tumors grow. As I said in my last entry, I have pulmonary nodules.   I also have this weird blob like thing in the right side of my lung. I have been monitored to make sure they remained stable, etc. They were first found when I had a PET scan last August (the PET was done to ensure my NF tumor wasn't cancer and to see if my liver tumor was visable- there was no liver tumor as other MRI's suggested). I had a follow up in November- no change. I was actually excited to get a chest CT at the time I did- I haven't been breathing right. I don't feel that 'refreshed' feeling when I take in a deep breath. In order to get that 'refreshed feeling' I have to REALLY breathe in HARD. So I wanted to see if the nodules were bothering my airways (I was told they could bother my airways, so I assume my nodules are the culprit) Well this is what it says now: (this is my CT scan) Lungs and airways: Examination of the lungs demonstrates that the 1cm gr

This past week I had two scans: 1) of my chest and 2) of my pelvis. I had the scan in my chest because I have pulmonary nodules . I am supposed to get them checked every 6 months. At the end of June,  though, my chest started feeling really tight. I saw my pain doctor about it, and when she felt around my ribs, she felt a squishy type bump.  So she had me get a chest x-ray but nothing came up. I didn't worry about it because I knew I'd be getting this chest CT eventually. However this week I have felt like an elephant has been sitting on my chest. I can't really take in deep breaths. So I was extra glad to get that CT done! Perhaps my husband got me sick- he had a similar feeling in his chest last week. Anyway, I'm more anxious about my pelvic MRI. My last pain spell, which lasted from June 20th until July 3 really took a toll in me. This was different from my other fits of pain. It was REALLY strong, and it lasted a REALLY long time. At one point I cried. I

There's a lot I want to say but it's hard to organize my thoughts.  I'll try! It's very late as I'm typing so forgive any typos. On Pelvic Pain A few months ago (February), I made this video: In this video, I was describing my recovery from my SECOND abdominal surgery, and how I was feeling from there pain wise. At the time, I was on 2400 mg of gabapentin. But a few days before I actualy made this video, I had a TERRIBLE case of bronchitis. I had so much medicine to take that I stopped taking the Gabapentin. It made me terribly 'foggy' and I was having so much trouble participating in class discussions. I was taking the Gabapentin because  after my surgery, I had terrible referred pain- exactly opposite of my surgical area was this intense burning sensation. Gabapentin saved me! But I realized a week after stopping the Gabapentin  that  I no longer had that burning sensation! So  I stopped it for good. It made me WAY loopy. I couldn't focus,

Just so you know, I'm writing this with a lot of meds pumped in me so it's not very eloquent at all... If you follow me on this blog and/or even on Facebook, you know that I am very open when it comes to talking about NF and the pain it causes me. I talk a LOT about what pain does to me physically. But I don't really talk about what it does to me psychologically. Before my surgery last year, I was dealing with this pain with NO medication. Well, I was taking medicine (Tylenol, etc) but it did nothing for me. So when I wrote about pain, it was often with very explicit language. I was about to give up. I was even suicidal. Nothing was helping me. So now I am on Oxycodone for it. Not every day-- just for the 10-15 days the pain attacks me.  It actually HELPS. So when I have a pain spell,  I know I will get some relief after I take it, even if it's temporary, so I am definitely NOT in as much distress (though the pain is still astronomical so it IS distres

It is about 12:30 am, and I am sitting here on my bed with my cats eyeing me from my doorway because they have not been fed a small bedtime snack. My parents are in the other room resting from a long day. My graduation gown and hood are hanging up- ready for tomorrow. I cannot believe I am graduating with my Master's degree! I want to talk about my tumultuous journey, but first I have people to thank. So many people to thank: My husband for being my backbone, and every now and then paper editor My family who was always there for me My professors and boss who wrote my recommendation letters My friends who helped me revise my personal statement when they were already busy with their lives My primary care doctor who helped me manage my pain and took care of me well- I would not have finished my program without her My pain team for being on top of everything and keeping me sane My current boss for being an AMAZING MENTOR My friends who always cheered me on!!! and encouraged me

I haven't written an update post in FOREVER. I've just had no time. Between school work, studying for Comps and more school work and applying for jobs...yeah. Now that school work is dwindling, my comps are over (and I passed!), I can write this long overdue blog about my GD esophagus.Not NF related, sure, but I am perpetually recovering from stomach cancer surgery, so yeah. Anyway, I've had problem swallowing since maybe February. Well, ha, I've had problems swallowing since my damn cancer surgery, but it got worse. So did my heartburn. I was worried. So I had an endoscopy in the beginning of March. This photo below is BASICALLY what I had done in 2009- after part of my stomach/esophagus/GE junction were removed, they fundoplicated it back together: It's not exactly like this because in this photo, the IN TACT stomach was wrapped against an IN TACT junction/esophagus. They took what was left of my stomach and wrapped it around what was left of my esophagu

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