The Words Beneath My Fingertips

So i first want to say that I was wrong about one of my most scathing parts of my last blog entry. When John was going over with me the parts of the PET that my surgeon didn't go over with me (because I won't read it- I know how to read it- but I won't read it- there's way too much to be overwhelmed with) I thought it described  my hip tumor as being sub-cutaneous , when in fact he had said CUTANEOUS, which makes an absolute huge difference. The PET showed Rosie, the nice bump on my hip. I have a picture on my NF picture tab. Sub-cutaneous would have been under my skin. So, there is still no real reason why sometimes I double over when I am in pain on my right side. So I guess I am glad I convinced myself of referred pain, since it still basically IS referred pain, and my surgeon is still a dick face. Anyway, I'm still bothered at the wall my surgeon pushes between us. I was explaining to my primary care doctor today (who I absolutely adore) that I feel like he is...

I don't even now where to begin, because I'm so so so pissed! And for those who followed my crazy status updates, blowing up your news feeds- please read - this is why I went from silly to pissed so quickly. I'll just begin with talking about my pain and stuff since well I've been in pain forever. My surgeon is sort of a DICKFACE. Imagine the biggest douche-bag boy science geek you can ever remember from your high school memories and imagine him with a sour face- like somebody who has sucked about 15 lemons.  He's just so short with me, and so 'yeah yeah yeah whatever whatever- i just get a really bad vibe from him and while I am confident he is going to do a good job i can't believe HE is going to be MY surgeon and to make it even better he runs on vacation as soon as he talks to john after my operation- WHICH HAS TO BE A DAY LATER- not his fault, but BLAH. My last surgeon was pretty awesome. This guy bites. Our first meeting  a few weeks ago when i...

I will be going under the knife and possibly be nuked on August 22. Once I know the deets I might do another youtube video like i did here in August 2009: (and fYI- I had procedure 2 and yes, acid reflux has taken over my life but the surgeon luckily did not touch my vagal nerve oh and people were way too generous to me in keeping me un-bored) I have a very good idea about how I will illustrate the radiation.... Oh my gosh planning the video is quite exciting. Yep. Ok. That's all I feel like writing. Aug 15 I learn the deets so I might write more then. For now I'm on vacay so if I write more it shouldn't be medical related. But maybe it will be. Mysteries!

So a lot lot lot lot lot lottt has been happening and I thought I'd tell you what that is!  Just to recap since I know you can't possibly remember what I write in this blog and post to Facebook-- I know mentioned in mid July I was finally going to see my neurologist/NF specialist about a tumor that was found in my lower left abdomen that was deemed to be an NF tumor...(even though the tumor was found in September and I was not told until the end of January by the MRI techs/beginning of Feb by my GI who gave me the results- I thought my January MrI was of my liver [I have a FNH on my liver and I thought I had to keep getting MRIs of it to get it checked out]) and if you don't remember I posted that, well, that's what happened! :) Anyway, despite that freaking DRAMA it took me months to get a hold of my NF specialist a few weeks ago (I only see him in DECEMBER so it would have been nice to know in September....) and he took one look at the MRI picture and he said it w...