Warning: Long, rambling post ahead...

Hello everyone! Just checking in to say hi. Things are mostly the same around here. I haven't been feeling too hot for the last few days. I've had a lot of abdominal pain. Not panky pain, thank the Lord! It's internal - I'm guessing it's the new connections that are getting some activity since I've started eating again. I'm having a hard time getting the pain under control even with the arsenal of medicines I have. It gets a little draining. In addition, I'm retaining water like crazy. I have giant cankles - everything is swollen. So, Louise (Dr. Dunn's nurse coordinator) called in some Lasix for me, which is a diuretic. I've tried the OTC stuff and it wasn't working, so I'm glad Louise was able to call something in. She's also ordered some blood work (last week and again this coming Thurs). There wasn't anything alarming in last week's labs, but they're just trying to figure all this out long distance. I have faith that they will, though. I have complete trust in that team, no matter how far apart we are.

Since I haven't been feeling great, I decided to stay another week up at mom's house. I waffled back and forth (I miss my family SO much), but finally determined that having a setback because I'm doing too much isn't worth the risk.

I know I have come so far since my surgery, and I'm incredibly grateful for all the support I have received from friends and family. I try to emphasize those things when I post. There's nothing to gain by whining about the tough times. However, my hope and true intent is that this blog can help others who are contemplating the TP-IAT. I pored over other blogs to learn about what to expect and hear the realities of life after the procedure rather than some article written by doctors. So for that, I want others to know that this is one of the hardest things I've had to do. Despite all the reading and preparation I did before surgery, I was not at all ready for how incredibly difficult this recovery was going to be. When I post that I had an Arby's roast beef sandwich, I leave out that I could only eat a few bites and was very nauseous afterward. When I say I walked to this point or that, I don't mention how sore and exhausted I am afterwards. Because I really am blessed with all the things that I CAN do now, so why focus on what I can't? As far as the TP-IAT, I would do the surgery over again in a minute. It has made such a huge improvement in my life. But I still hurt. A lot. My pancreas was the source of all my pain before, so what hurts now that it's gone? I don't know. I've had other surgeries and have healed much faster from those. But still, I have to take a lot of narcotics. Even more than I was on before my surgery. I really don't know why I need them, but I do. The doctors all tell me that this is completely normal, and are actually surprised at how quickly I have ramped down on those meds by myself. I am way ahead of their expectations, but they say it will take up to a year to wean off the meds, if I'm able to do it at all. Some people continue on them forever. I guess it depends on how much and how long you were on narcotics before the surgery. Apparently, in some cases, the body will continue to feel pain even after the source is gone. That's not me. I will be off these meds before the end of 2012, hopefully sooner. But right now, I'm not safe to drive. I don't think I can react quickly enough if I needed to. But for how much longer - I don't know. It's an imposition on others who have to drive me to appointments. It would be nice if I could drive my kids to all their activities, especially since I'll be home and not working. It only makes sense. But if I hurt them or anyone else, I would never forgive myself. So it's this constant inner battle of needing to recover vs what my family needs and me being able to contribute and not just be a drain on them.

My point to this whole long ramble is that there's more to illness than meets the eye. When you see me out and about and looking great, it's OK to tell me so! :-)  But please know that I may or may not be feeling great right at that moment (I won't tell you, either), but this isn't how I look 24/7. I've read that those with chronic illnesses can often feel defensive when others comment on how they "look." They don't want to be pitied, so will try to look as "normal" as possible. But if they're seen doing something normal, others expect that they can/should be that way all the time. I want to be realistic here - I'm eternally grateful for all the support I've gotten, and the wonderful doctors who have cared for me. My life has completely changed from having this surgery - 99.9% for the better. It has given me the freedom to eat basically whatever I want to. (Even with diabetes, I really have NO food restrictions at all.) I know when I wake up how I will feel that day - no more surprises. I'm even looking forward to the things I'll be able to do with my kids now; that they'll no longer remember me as the mom who laid in bed all the time. I'm so excited about the new lease on life that I'm getting. But I don't want to come across as perfect and Pollyanna. Recovery is hard - physically and emotionally. I still get defensive when people say benign things because I've been called a hypochondriac, a drama queen, a drug seeker. Yes, I'm probably partly 2 out of the 3 ;-) but I'll get there. Not tomorrow, but I will get there.