December 30,2006
Well faithful followers I am proud to announce to you that it is beginning to seem as though the surgery was " worth it". I know there were a few people who were beginning to wonder what was going on. There were a few who were watching my recovery to decide if they should have surgery. The past couple of weeks I have slowly started having more good than bad days. The bad days are bad but they are not followed by day after day of bad days. I am still recovering and have lost alot of weight (actually 50 lbs)in one year. My strength is increasing, I have even started to sew a little got a nightgown put together ( it only took me 2 months to get it done) who says I am not persistent?
I still have some pain, but it is relieved with medication which did not happen with pancreatitis. Food is good, I can't eat much at one time, but it is still wonderful. I can't believe that for 40 years I had a small bowel obstruction that was only getting worse. At the time of surgery it was a complete obstruction, I would have never been able to eat had that not been fixed. The diabetes is minimal. I use 7U of Lantus a day, and I am getting an insulin pump as soon as the manufacture can figure out what they are doing. I need very small amounts of insulin ( like the pancreas would give) the amount that I take works all day long, I could use about a half of a unit when I eat, but there are no syringes that measure that small of an amount, thus the pump. The pump makes is possible to give a small amount all day and then give extra small amounts. The thing about the diabetes is it is sooo controllable with a little effort. I don't care how much effort you give pancreatitis it is never controllable, never, ever. The tube feeding site is healed and gone expect for the scar.
Michael says he is happy with the surgery and he has no other thing he would like to say. He wanted me to tell everybody that it has been 98 days since I had a cigarette. I had 2 cigarettes the day of surgery, but after that I have not had a cigarette not even a puff. There are days that I would love to have a cigarette, but I know that diabetes and smoking don't mix. I will not loose my feet or legs because of smoking with diabetes. My husband is a surgical nurse and all of the amputations they do are because of diabetes and smoking, it will happen if I con't to smoke and that is not an option. I lost 10 years of my life to pancreatitis I will not loose my mobility again especially for something I can prevent. There were times when I was wheelchair bound. There were times I was soo sick I couldn't hold my head up. There were times I was so sick that I couldn't walk. I would fall flat on my face if I tried to stand up. I can't believe that pancreatitis is a thing of the past, I no longer have pancreatitis..... what more could a girl ask for at Christmas time.... so we begin a new year shortly..... what will 2007 hold..... I don't have an answer...... hope.... hope for a future I didn't think was there...... hope that I will be here in 5 years...... I don't have any answers I am as clueless as everyone else. Will I get back all that I have lost? I don't know. Will I go back to work as a nurse? I don't have an answer. All I know is I haven't done so many things in so long. I want to work in the yard, plant flowers, dig in the dirt. I want to decorate my house. Sew, and sew some more. Watch old movies and actually pay attention to the plot because it doesn't hurt so bad that I can't stand it. Read a book and actually be able to keep up with it. Time will tell all that I will do. Just waking up and not hearing my own voice scream is a good thing for me. Come on 2007 get here I want to put the last 10 years behind me I am ready to move forward....
The picture below was taken 12-28-06 I had went to the Dr.

December 18, 2006

Well here we are and Christmas is almost here. Almost a New Year very soon. I made it to church yesterday, the 3rd times since surgery. People see me at church and say "you look good" this statement always used to honk me off when I had pancreatitis. One person asked me yesterday if I felt better when I said " I still have alot of pain" they didn't want to hear it, they were making nice comments. In the grand scheme of things people really don't care how we feel, they don't know anything else to say to us so they think that because we have had surgery everything is fixed now and should (their impression) be better, these of course are the idiots that never understood pancreatitis to begin with. I have little patience with people these day, less than I had before. I guess I was living with the dream that things would be different than what they really are. My family members sometimes will say stupid stuff like "well at least you can eat now" no the truth is I don't have a funcitonal bowel obstruction any more so you feel better now that you think I can eat. You don't listen when I say it hurts so bad after I eat that I wish I hadn't ate, and that it would be alot easier if the j-tube were still there, so I could hook it up and not have to eat. People hear what they want and tune the rest out.There are some who believe that I need more time to heal. Personally I am at a loss, there is nothing I can do about any of it anyway, go with the flow is what I do. We don't purchase Christmas gifts at the Atwell's anymore. Once my husband and I started going to church about 4 years ago, we went to the mall to get my husband a pair of tennis shoes to wear to work and we saw people out shopping like zobbies, " must buy Christmas presence" the sound in their voice like Homer Simpson, must buy must get and we saw the insanity of the mass mechandisers, the time of year that every CEO plans for. Notice I wrote Christmas presence, they are attempting to buy something that can't be bought. I opted out of this craziness along time ago. For the past 2 Christmas' I haven't even put up a tree, some might say " why" part of the reason, I can't drag the thing up from the basement, and I plainly don't have the strength to put it up and take it back down. There isn't a soul here who cares anyway. I will get my daughter and her boyfriend a small gift, but the days of blow out Christmas' are over here. I would much rather get up on Christmas and watch good movies and be with my family than open gifts I don't want much less need, especially to fulfill a messed up idea of what Christmas should be.
To close for this post, from our house to yours May you all have a VERY MERRY CHRISTMAS, AND A VERY UNPAINFUL NEW YEAR.

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.

12-01-06
If you have been reading then you have found out that purple is my favorite color, once I found the purple for the font I am hooked.
I had my intrathecal pump filled last week and the pain management Dr. wanted to decrease it by 10% which I thought was crazy since I was still wearing the Duragesic patch that MN had prescribed. My opinion was to stop the patch and then we would start decreasing the intrathecal pump. I still have alot of pain, and we will decrease the pump as I am able to tolerate. I did write Dr. Sutherland an email this week and he said that he would think that my islets are functioning at max capacity now. Amazing, my blood sugars are good, I get low to frequently, that is probably because my islets are working. My pcp mentioned an insulin pump, but currently I am still trying to find the "right" dose of insulin. I will continue to try. I am getting a little response to the blog, I hate that someone else has to be sick to respond to the blog, but that is life.