Tuesday update

Well, we had a crazy busy day today, but got a lot done. I had a bunch of tests (see yesterday's post) and met with 2 doctors. The first Dr I met with was the psychologist who works with pain management and the pancreas team. Today was really an assessment, where he realized that basically, I'm bat shit crazy, lol! He and the pain doc are working together to develop a plan that includes weaning off the narcotics, learning how to control my pain, and shift my way of thinking that I have no self worth while I'm unable to do anything that contributes to society. I also saw Dr Dunn today. I told her that I highly recommend they have all of their patients meet with these guys before they go home. I have seen many post-op patients who have lots of troubles around the 6 month timeline. She wants to talk to the whole team tomorrow, but it sounds like we're not going to do surgery at this point anyway. I was lukewarm on the idea - I'm not too excited about having ANOTHER surgery, but I was kind of hoping for a quick fix. Dr Dunn thinks that my massive amount of scar tissue is definitely contributing to my pain, but removing that scar tissue can cause pretty severe complications if the bowels are perforated or kinked in any way. So, I think we're going to sit tight for another 3 months or so and see if my pain improves using these other techniques first. And I'm OK with that. Tomorrow and Thursday I have tests for the study drug that take 3-5 hours each day. Friday I meet with the pain doc again. I think we'll be here for about 2 - 2.5 weeks depending on when the psych and pain guy can fit me in. By the way, it got up to 4° today. Tomorrow is supposed to be much warmer. 22°. And snowing. Plus the wind was literally picking up people a la Wizard of Oz. Much fun. How do people DO this every day? Brrr!

Balmy weather

OMG. Tomorrow it is supposed to be -35 outside. Yes, thirty five degrees below zero. How is this even compatible with life?!

Update from MN

Hello everyone,

Well, I am in Minnesota again, for both my 1 year post-op visit and also to meet a whole gaggle of doctors who will try to figure out why I'm still so jacked up.

I saw the pain management doctor first today. He said that I am extremely sensitive to pain and looked at it from a physiological/psychological perspective. He believes I'm trying to focus on my end goal (returning to my previous lifestyle, working, etc) instead of healing what's ailing me in the moment. This is true - I am always looking for the time when I will live a normal life. (As normal as possible, anyway...)  I think a lot of it is learning how to practice mind over matter. He has a program where he works with the psychologist- they see the patient about 3 times each over a couple weeks, then send you back home to practice it for 3 months, then come back for some final sessions. He believes I suffer from PTSD stemming from the surgery. Since I define myself as valuable by the ability to work and take care of my family, I have a tough time when I'm unable to do those thing. Personally, I think the PTSD label tends to be a bit over used, but I guess the surgery could be identified as a traumatic event. Either way, I'm willing to try new things!

Then I saw the GI. He is definitely interested, but quite baffled by me. He ordered some tests, and wants to talk to the team at their group meeting Wed night. Then Dr Freeman came in. He's the one who finally diagnosed all my pancreas issues. I just love the guy. I even gave him a big hug, and for those who know me, you know how much I hug!  ;-) He suggested changing out my pancreatic enzymes;  I will be on those for the rest of my life, though I had to take them prior to my panky-yanky so that's no big deal.

So, tomorrow (Tues), I have an appt with the psychologist, Dr Dunn (my pancreas surgeon), bloodwork, an EKG, a CT and a Dexa scan (measures the calcium in your bones).  Then Wed and Thurs I spend the day doing tests from the study drug. Friday I meet with the pain dr again. It sounds like I will be here about 2-3 weeks, as long as I don't need surgery.  Î should know much more by tomorrow, so I'll do my best to update y'all as soon as possible!