Pain Management and How Much I Hate My Gastroenterologist.

So I finally met my pain management team today. The "team" consists of a pain psychologist and a pain physiologist. The appointment was set up a few months ago and it was great to finally see them today. Pain psychologist is really nice but WAY too touchy feely for me- don't know how to explain it but maybe it's just jarring to have a doctor other than my primary care doctor to actually react to the pain I've been describing. I've felt like I've been psychotic all these years. i'm finally vindicated. Well, I felt vindicated when I wrote my first entries of this blog. But YEAH.


Anyway I need pain management because the pain comes and goes at random times and stays for ranodm amounts of time and the pain is intense... I mean really intense.I've been in a 'spat' for the last few days, so I'm happy I actually saw the pain doctor when I felt the pain- I usually see my doctors before the pain starts or after a bad spat. Never during. so huzzah.


So for those who are new to reading my blog (and forgive me for the few who read it religiously haha)
1. I have NF- a genetic condition characterized by tumors that grow at the nerves. If you want to know more about THAT, I have a tab that talks about what NF is, and I have another tab that has pictures of my freckling/outer tumors.

2. Most NF tumors are not supposed to cause pain, and most of mine don't except for the one on my toe and the one in my abdomen.

The main problem I have is with my abdominal tumor, and this has been one hell of a freakshow to figure out that it is a tumor in the first place. The pain i've been experiencing with this tumor is the reason I started this blog- a chronicle of sorts of  the goings on of my body.

Anyway I'll update you with what I've been blogging about since February and I'll try to be quick. I repeat myself a lot in many of these blogs but I feel like I become clearer with each time I write about what is going on with me.

Pain begins in 2004, - it is a sharp, deep, burning grinding pain. because of where the pain was, I saw a gynocologist. Had ultrasound. Ultrasound revealed an ovarian cyst, but doctor said this cyst shouldn't cause pain, so she told me to come back for another scan, did, pain still there, cyst was not, so she just told me sometimes cysts can hurt.

Pain continued and worsened and I always thought it was just the cyst.

2009- couldn't take it anymore. My PCP connected me to a gastroenterologist. Had several tests. Source of pain not found, but what was found? Cancer in a totally different area. That was taken care of pain still did not go away.

Last June (2010)- pain got at its all time worst. I begged my gastro-doc to perform more tests even though he told me it was only stress/IBS, but stress wasn't causing my pain, my pain was causing my stress but that always fell on deaf ears. So when I begged for tests it began with an ultrasound- something on spleen found, did MRI to look at spleen, nothing on spleen something on my liver. THIS IS WHERE IT GETS INFURIATING. Long story short, 3 scans were done of my liver and in September my doctor was able to confirm for the third time the spot is benign- a focal nodular hyperplasia (didn't believe him the first time since he thought my cancer wasn't cancer and it was only found to be cancer when the facility I went to for these scans didn't do endoscopic ultrasounds to really characterize weird looking stomach polyps, so hell no I didn't believe him when he didn't think my liver spot was dangerous- and hell yes I was scared), that I'd get a followup in January.

January comes, and I was in pain for this scan, so I ask the tech how much of my abdomen would be seen if they were just scanning the liver since I was curious to see what the FUCK hurts so much in my abdomen, turns out, it wasn't my liver they were scanning, it was the exact area I've been in pain since 2004- a tumor was there. News to me. Gastrodoc never told me about this before when he called me about the scan in September, yet, they found it in September which is why I had a followup. So then he calls me to tell me where the tumor is, and that it's a neural sheath tumor consistent with NF, but nothing more.

Thus began the race to get a hold of my NF doctor. Had to go through all this crap to get the image CD of this MRI to him. I hand delivered to his office the CD, the pathology report, and a letter I wrote and he responded a month later (March) and told me he only had my letter, nothing else. He said a nurse would be calling me to set up another appointment. It's now July. Have not been able to get in touch with him. HAD MY GASTROENTEROLOGIST TOLD ME IN SEPTEMBER MY NF DOC WOULD HAVE BEEN ABLE TO SEE THE SCAN/REPORT AND TELL ME WHAT KIND OF NF TUMOR IT IS WHEN I SAW HIM IN DECEMBER.

Anyway. Gastroenterologist has been certain my pain is from IBS/Stress. This proves he AGAIN is WRONG. The tumor is so embedded in my muscle that while it's a neve pain, it causes muscle spams when the nerve spasms. My leg muscle is so constricted I need physical therapy. And since it's so embedded where it is, when I DO have menstrual cramps, they really are debilitating and it's really not me being a big baby about it!!!! The nerve pain meds I've been on since the end of April has made me gain 5 pounds. Yes, I've needed the weight gain since my surgery recovery, but I've been used to a gradual weight gain, like 1-2 pounds every few months. Not this. And now my Pain doc wants to up the dose. So these are the only things that can help me: physical therapy, my medicine and he also suggests accupuncture. he also suggested a new nerve pain medication that suppresses appetite and causes "brain fog" but I can't afford fucking "brain fog" when i'm at the tail end of my grad program. And while i odn't want to gain weight I don't need my appetite suppressed. So. We'll see.

But my gastroenterologist can go fuck himself. He will no longer be seeing me for any of my stomach/abdomen woes. I really just want to know why he didn't tell me about this in September. I REALLY JUST WANT TO KNOW WHY.

So for those who don't usually read my blog, this is why I status about my pain, and if you've never seen my statuses about pain, I might have been because I blocked you from them so you wouldn't be so bombareded from my complaining especially sicne I always thought I was psychotic for even thinking my pain was bad, that everybody experiences pain like this- hard to explain,  but dealing this has made me feel psychotic 1) about how I feel the degree of the pain was and 2) about how I think other people think of ME when I talk about my pain.





While nothing/nobody can 'cure' me from this pain, at least I have things I can do now to help.
I don't talk talk to most people about what I go through so this is how I vent. So there. That's it. And there will be more blogs and venting/complaining in my statuses. And maybe you'll be b locked from them, maybe not, but this blog chronicles most of my health problems and if you're curious, you can go through my archives. Thanks for reading if you did .