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 ...

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...

Just got my path report in the mail as promised. I love pathology language. First of all, I love how it begins with this: Study of Indication: Left retroperitoneal mass on previous MRI for characterization. -- I was not told about this in September as I said in my video in my last entry. I can't believe I was WITHHELD information. I was only told about my LIVER. Can't wait to bitch to my gastroenterlogist!! Findings: There is a left retroperitoneal  lesion measuring approximately 3.7 cm in craniocaudal and 2.4 cm in transverse dimensions, with an oval morphology. It lies parallel to the psoas muscle. [then it goes on to explain in scientific terms how the tumor lit up in different lights/magnetic intensities]. There are two smaller lesions, one in the right rectus muscle (5:15) measuring 12 mm and the other in the right lateral abdominal wall measuring 5 mm (5:12). Findings are highly suggestive of multiple nerve sheath tumors. Clinical investigation for neurofibromat...