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...

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...

So it has been almost three months since my last post. I last left you in October when I started a new nerve pain regimen, Lyrica, to be taken every single day (as I did with the gabapentin) and I could increase the dose during pain spells to help with breakthrough pain after taking oxycodone. Lyrica is generally used for fibromyalgia. I'm sure you've heard of it, since it's advertised on TV all the time. Lyrica did not help my pain. Around mid November, my doctor put me on a new medication called Nortryptilene. This does not help. I will say that gabapentin, Lyrica and now nortryptilene help with ONE thing: the occasional neuropathy in my arm, which I believe is caused from a tumor in my hand bone (he is pictured in my 'meet my exterior tumors' tab). Yes, I call the tumor a 'he' because I have named him Handel. Yes, like the composer. ANYWAY, meanwhile my oxycodone was also increased. I was finally allowed to take 20 mg at a time 2x day (during my...

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...

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.

Some excepts of my last blog entry: Before my surgery, I told my surgeon (if you recall from that entry) that I had pain on my right side, too,and he pretty much told me that he wouldn't do anything about it...I was told that this pain was referred pain from the left side tumor and it would go away after surgery.   IT HAS NOT. In fact the pain on my right side is worse than it has ever been before ...If I press deep down on my skin, the muscle around my  bone is VERY sensitive and it hurts to press down on it. It hurts from the top right side of my pelvic bone, across and down my groin area (sorry if that's TMI) and sometimes down my right thigh (on the front side) and SOMETIMES it extends to my right lowr back area. But it usually stays focused on that pelvic bone area!  Since i wrote that entry, I saw a new pain doctor, and as soon as I pointed to the area of pain (I happened to have been in pain when I met her- usually my pain spells are over by the time ...