12-5-06

I have recieved some e-mails questioning how I am doing. I have not posted lately as I haven't been feeling well and it takes all I have to get done what little bit I can do. I was taken off the Duragesic patch on 11-20-06 and did well with little to no withdrawl symptoms. After about 2 weeks I started having that all to familar pain again, it is very distressing to think that I had this big huge surgery and it still hurts. What I have to remind myself is that I was once taking Actiq 800 mcgs 6 times a day in addition to valium and xanax through out the day. Those medications are gone and hopefully they won't be needed again. I think the idea of getting a patient off all their pre surgery meds is the goal, although it should be done appropriately. I want to be 100% who doesn't, I haven't been 100% in over 10 years now, why should I think it would happen in less than 90 days. I have always had high expectations of myself, I want a life so badly that I can't wait for it to get here. I should be glad that I am not tube feeding anymore, I should be glad that I made it home safely. I am human and I want more than what I am at this point. I want to paint rooms and decorate my house, all of the things that other people do and have the ability to do. I am lucky if I can take a shower and cook supper , someone else will have to do the dishes. I am trying to be truthful here. I have people call me on the phone and say " well are you better now" I want so desperately to say to these people " I don't know lay around for 10 years of your life and barely exist only to make it to Drs. appointments. Then spend years trying to find someone to help you, endure every barbic treatment known to mankind. Have a 14-16 hour surgery where your entire bowel is removed from your abdomen and placed to the side, pancreas removed, ground up and islets reinfused into a huge vessel and sucked into an organ that was never intended to the job that you are now expecting it to do, remove my duodeum and spleen, recieve 3 units of someone else blood, wake up feeling for months like you got into a fight with a tractor trailor truck and it won, how do you thing you would feel" I have put the pictures on here spared no shameful information how would you guys feel about such idiots? I have even had people call and say " we are coming over right now" my reply is " I don't think so" I guess people don't stop and think. When I say I don't feel good, I here that sound on the other end of the phone, not by those who really know me, those who really know me , know what the past 10 plus years have been like. Those who truely know what the past has been like tell me " it has been over 10 years what do you expect" " you are less than 3 months post op, big surgeries take a year to get over" My new years resolution is going to be " to be a little kinder to myself and not expect so much" I can't help it, I never planned this to happen, I would have planned something alot less painful, had this been my decision. I am not trying to depress those who are still sick, I just want them keep a realistic idea of what is truely going to happen. This is a chronicle of my life with pancreatitis. I did this because there is such little information about pancreatitis. Most of the information available is frankly just wrong. By telling everything that I go through it will give a more realistic impression of how this disease process effects one life. Not some book that gives just the medical facts, there is a human side to pancreatitis, and every sufferer knows that, it is the medical community that has little information about what we really need, or how to help us. There are Drs. who are willing and without them we would truely be in trouble, there is no way we can face the daily pain without a physician who believes in us as an individual. I will try to keep the blog updated at least weekly. I will have no shame in telling you if I am having lots of fun, that is why I went through this surgery. If I haven't posted, I seriously doubt that it will be because I am having soo much fun, one can just about conclude that it is because I am too ill to keep up with my obligations if the blog isn't being updated. My husband is bogged down with work and BSN school he doesn't have time to keep it updated, he barely had time to get me to MN. He had to leave to go back to school and be home to make the necessary arrangements for me. I guess I am grouchy, days of pain will do that to a person. I have made up my mind I am not suffering for anyone. I want this surgery to be a success more than anyone else, but I think we need to have a reasonable time frame and some things are happening too quick.