What a lovely picture of a swollen belly. This is what happens to me at times. Yes, that is my j-tube, this is not a picture perfect shot. But I felt it necessary to take, so that others who deal with similar circumstances won't feel so alone. Once you have had a child everybody and their brother has already seen EVERYTHING one has to offer anyway. Pancreatitis is what it is and if this embrassing picture helps one person then so be it.
These past two weeks have been trying. Everything I have attempted to do has been a huge hassel. If I make it to MN in one piece it will be a gift from God. There have been several times I have thought about going to the hosptial, pain control is not working. I have come to the conclusion that the only thing that will help, is removing these disease organs. 2 weeks from today it will already be a done deal, thumpy will be out, and then the recouperation period will start. I worry about pain control with the surgery as I am soo very opoid tolerant. After 10 years who wouldn't be. I just have to keep the faith that God will see me through. I have not been the good Christian that I should be these last few weeks, and I am hoping that God will look beyond my humaness and see my suffering. My heart is true in my efforts to help people with this disease. I guess I just need to spend more time reading my Bible and give it up to him. I keep too much inside myself, and keep myself too stressed. If any of you from the boards are reading this, I think of you all so often and wish for ALL of us that this could be so different then what it is. God bless and no that you are all always in my thoughts. Especially you Sandy, Susan, Celeste just to name a few that come to the top of my head. I am very painful now and must go sit on my homedics back massager and put the heating pad to my aching pancreas. Keep those chins up, someday this will all be over. We will have new bodies, perfect and without defect.

July 30,2006
It is now 6:24 am I have been up for hours now, in pain. I always wake up at night. I went to bed at 11:45 later than usual. I woke up about 4am, to the usual pain, pain, pain. I get my usual meds in me, but my body still reacts to the pain I feel. It has quited down enough that I no longer moan. But as I sit typing or trying to watch TV the tears roll down my face. To which I have either gotten so use too or no longer pay any attention too. The brain is made in such a way that when we have physical stressors or physical pain this is a response to that pain. I really don't even realize I do it any more, until I have to get up to wipe my face because it is soaked. I am not even aware that I carry tissues and have them stuffed everywhere. This has went on for so long I don't even think about it anymore. This is me, I don't want pity, I am just writing about my life and how pancreatitis affects our lives, mine in particular for this blog. I can't fathom that 10 years of this nastiness has passed by me.
In addition to the pancreas pain, I am having some issues with the implanted pump (intrathecal pump) when it was placed I had some complications. Apparently I had unknown arthritis of the spine, what was suppose to be a relatively easy procedure was a nightmare. I woke to the feeling of my toes on the left foot feeling like hot saws were cutting on them. I took off the provided hospital socks ( only lt sock) and knowning everybody in surgery because my husband works there. For some reason everyone felt the need to touch that uncovered foot, sending shooting pain up my leg. By the time I got to my hospital bed, it was worse. The Dr. at the time, said he thought he touched the L-4 nerve root ganglion attempting to get the catheter in. I was laying in the bed screaming asking the nurse to help me. All she wanted was to get her assessment done and finish my history and physical. My husband was begging her to do something, while I screamed and cried. Eventually he had enough of her questions ( Mrs. Atwell how many times a week do you have a bowel movement) I was obviously distressed, my husband left the room to get her supervisor. They all stood around my bed, looking, the supervisor says to my husband" well how does she usual act" He told she is in chronic pain, but this is different, he finally got tired of it and went and got the Dr. He started telling them orders to which they stated " we can't do that here, she has to be on a monitor for that, we aren't prepared for that here". supervisor said " if you write it then maybe" I heard him say " shit" and left the room. Prior to the nursing supervisor coming into the room, I told my husband " take the pillow out from under my head, smoother me with it, put it back under my head, walk out and let them find me and call you and tell you they found me dead" I was serious, his reply " Lisa I can't do it" I begged him, I realize now that was more than he could do, I just could not take anymore. The Dr. did give me an IV injection of versed to calm me down and ordered IV steriods to calm down that irritated nerve. On occasion I will feel that twinge down my left leg and it is quite painful. I tried taking Advil once, without food wouldn't recommend it. It was like taking battery acid about 40 minutes later. I will be glad once the tp/ict is over maybe in a year from now the pump can just totally be shut down. They tell me now that is the beauty of the old style pumps, they can fill them with sterile saline and then shut them off, they are there if you need them otherwise just shut it down. That is my goal shut it down. I am just trying to make it day to day until the surgery. The surgery, the surgery. I want it done and over with and to all ready be back home recouperating. I have said before it is happening right on time, much more of this and I would need a major medication increase. I don't want to increase the meds in the pump, it will just be more to have to detox off of, and that really isn't so bad, but if I can avoid it I will.
I guess it is the old nurse in me but I am a planner, plan, plan my life away. I have considered even writing out funeral arrangement, I have to have it the way I would want it. One can never be too prepared. What songs, what clothes, all that type of stuff. I learned early in life the only way to get something done, is to do it yourself. It is to time consuming to talk others through what ever the issue and they don't usually care what ever the issue is anyway.
I am contemplating getting one of the video services that delivers movies to the door. You pick out your wish list and when you return one then they send you another. If nothing else just for a few months. There are alot of movies that I would like to see, I just don't take the time to watch them. I think I have adult attention deficit disorder, always on the move, never sit down, until I am so painful I have no other choice. Maybe it comes from being a single parent and doing all the jobs that 2 people should normally do. Previous to pancreatitis, I worked as a nurse, mowed the grass, shoveled snow. Kept the house up; inside and out and did all the cooking, cleaning that had to be done. I even once had a life where I could plant flowers. Flowers in the yard, love them. Especially periannuals they are such a gift. Back every year like clock work, short lived but back every year. I can't wait to do this again. I once loved to decorate my home. We have since moved and I haven't had the strength to do major things to our home. It has the potential to be a nice house. I really am quite particular about how my house is kept. I have never understood people who get up go to work and live like pigs, for heavens sake it is hard earned money, why make an investment and then not take care of it. I do however need to let others in the house take responsibility for their part in the upkeep. They know if they don't do it, that Lisa will eventually see to it that it is done. My own fault I suppose, I refuse again to live like a pig. What I have I worked myself almost to death for and I refuse to let it fall apart.
I am beginning to get sleepy, so off to bed I go. Another Sunday of missing Church, hopelully God understands? I can't wait to go to bed at night and get up the next day, ready to tackle the day.

Friday, July 28, 2006

July 28, 2006My time that I feel productive enough to get something done has been consumed with attempting to cook and freeze food for my family. Last year, while trying to find something that I could eat ( that would not cause terrible pain) I saw on TBN a man named Rubin Jordan. Who has an awesome testimony about a G.I. disease that almost took his life. If your interested to read the website is www.makersdiet.com I started this diet and put everyone in my family on it. I did learn some things although this diet focus' alot on fat which we all know we can't tolerate. I will say that between the time I started this diet and the tube feeding it did keep me going. I ate things that I never EVER thought that I would eat. Something called kefir which is basically spoiled milk, I used it on organic cereal as protein intake was real hard. Meat is terribly hard for me to digest and I had to come up with an alternative. I tried protein bars, but they hurt just as bad as meat. I gave up all simple sugars and pitched out everything in my cabinets that weren't whole grain. I joined a food co-op for the ability to try new foods and spices. There I can buy 1 teaspoon or less. It was an interesting lesson. They cook lunch there everyday as it is located on the grounds of Earlham College. I did buy some cooked cousous once with roasted veggies and rosemary. It was quite tastey actually. Everything they cook there is vegan, so when in Rome do like a Roman I suppose. We are all eagerly awaiting Augusts arrival, wish our lives away. I just want thumpy out and anything else that has to do with thumpy, so I guess that would the duodeum since they are one and the same. I am glad for the week end my poor husband works full-time and is in an intensive BSN class. It is a get it done in 18months type deal and each class that would normally take months at a University lasts no more than 5 weeks with the way he is doing it. It will be over in the spring on 2007. Then on to graduate school, for what he has not yet determined. He kicks around the idea of NP ( nurse practioner) but he is not sure. What ever it is he will do well with it. I will brag on him, he ALWAYS has the highest GPA in the class, it will settle for nothing less. If my surgery is successful I plan to return to high education again myself. Probably a degree in health care adminstration, since nursing is out, with the lifting, tugging and pulling on people. I have worked in a nursing home when I was a young nurse and it was ok then, but my skill level when I left nursing had grown so much, I don't think I would ever be able to go back to that type of nursing. I worked in occupational health when I left it was a subdivision of the ER and I worked in the ER in the mornings until our Dr. arrived. Boy, I sure did learn alot there, you either learn or leave, adapt or get out.The pain from the pancreatitis is getting worse. I think the timing for the surgery is going to be right on time. Any later and I don't know how much more of it I could stand. The j-tube is holding up. It was suppose to be changed last week, but I discussed it with the radiologist who placed it and I believe Dr. Sutherland mentioned replacing it so I saw no need to do it twice within 3 weeks of each replacement. I want to save what insurance money I have, I may need it. I am quite suprise that no one ever leaves any comments. Does that mean that no one comes here? I don't know. Am I doing this as a waist of time? I guess if one person stumbles across and finds help then it will have been worth every word of it.If you do come here, if you don't want to comment that is fine. Ask me a question Iwill get back to you, I promise.The picture that was drawn was done by my husband. This post picture of my daughers 21st Birthday last year. I am the one with the white long sleeves and brown stripe shirt. The little dish next to me is my baby.

July 23,2006
Purple my favorite color. Yes, it is beautiful. Every flower, or at least most that I have ever planted in my life is purple. My wedding dress I wore was actually purple. The picture that was posted yesterday was drawn by my talented husband. Why he puts up all my non sense I will never know. It would be so much easier for him to just walk away.
I woke up this morning at 3 to the sound of my own voice. It was about 3:10 the only thought I had was, they programmed my pump to give me 0.5 mg extra of morphine why am I doing this. Then I thought " boy I would really hate to think what it would have felt like without the extra medication" I stayed up until about 7 am cruising the internet. Not much out there when your in pain. I then went back to bed and slept until almost 12:30pm. I had my husband shut the door so the cats wouldn't walk on the head board and fall off. Or try to get to the dresser that has the old tube feeding bottle that I switched out when it went dry ( cats can smell milk a mile away, trust me on that one)
My days are filled with nothingness, to painful to get involved in anything, it takes enough pain medication to just sit. I haven't gotten dressed today. I did get dressed yesterday, it lasted about 3 hours. I have although brushed my hair, yea for me. I am quite the critic of late. Don't have anything to say and when I do say anything it is usually not very nice. It is not anyone at this houses fault, but sometimes we take things out on those we love the most. Not intentionally but just because they are here. My husband never waivers in his resolve to me, and his faith is much more than my lately. He believes that God will see us through. I am ashamed to say it " but I have given up that on that one" " Is there a God that would let us go through such things?" I don't know anymore. The gates of Heaven are boarded shut and locked or so it seems to me. Honesty is what you'll get from me. Am I damned to hell for this one, only He that made me knows that one for sure. Is this hell, you betcha. Hell for all involved. Would it not be easier for the insurance company to just come right to my house and put a bullet in my head. Yea, and right now I wish one of them had the guts to do it. I would probably help them, I know I would let them in. In the end we live in an unjust world, and people everyday die from the indirect hand of people with far too much power. The power of the written word, the power to make decisions that affect and effect the whole world. This world is a cesspool of what it was intended to be. I know one thing for sure "you reap what you sow" and for those in the decision making processes of life, they will get what they have coming eventually. We may never see it or hear about it, but I have known for years " what goes around comes around" I am going to try and download of picture of me attempting to get comfortable today, not a pretty sight.

July 22, 2006
I have not posted for several days as I had an appointment with the Dr. that fills my intrathecal pump and while I was gone I had received a call from Minnesota finacial services dept. I knew immediately that something was wrong, it was too late however for me to reach anyone there.What was the issue that day and was resolved has now become a different issue. I personally believe that the file sat on someones desk too long and they are attempting to determine a way out of the approval that had been given previouslyI can assure you that I am pissed to no end, and am ready for what ever fight is to ensue. I knew that when I had approval for this surgery in 6 days that it went to well, especially for an insurance carrier that has denied routine hospital stays for dehydration. Believe me, this is not the first time they have denied medical procedures. When I had the j-tube inserted they would pay for the j-tube insertion but not the food " as nutritional supplements are not covered" give me a break. Anything I eat causes so much pain, I wouldn't begin to eat. That is why I lost 40lbs duh.I truly understand why people go "postal" I really do. There is only so much that one person can humanly take. I have gotten the plan book out and it discuss this type of transplant which is no different than a bone marrow transplant. There are other types of these transplants just I don't feel like listing them all. It basically boils down to they don't want to pay for it. I spoke with the lady from fianicial services at UM and she said " they have NEVER recieved authorization and then have taken away". Never. They have not cancelled the surgery, yet. Only time will tell how this will play out. I can tell you that they are aggressive looking for a way out. The HR person at my husbands work can't even say the name of the procedure and then told me that their so called insurance company pays a physician board to determine what classification it falls under. No they pay them to deny services, my husband works with a Dr. who once worked for an insurance co. and they would give them HUGE bonus' to deny surgeries anything to save them money and if they saved them enough then they would give them big incentives to continue to do so. She finally left because she knew they were killing people. I have honestly said " I was not looking forward to this surgery, I was afraid, but that I knew it was a means to and end" It is terribly difficult to see the light in the tunnel and now have the tunnel capped of to prevent you from seeing the light. If it doesn't happen, then I was willing to have it done. I even told the HR rep what kind of idiot am I that I would willingly let someone take out my pancreas, duodeum, spleen and 1/3rd of my stomach? Does that tell you how bad I feel that I am willing to let someone do something so radical to me, in hopes that it will work. I can no longer eat enough to sustain life, they have been told that without this surgery I will probably never eat another meal. So I guess they don't think that in the long run with all of the tube feeding supplies, and the pain meds, and the pump refills, and the surgery to replace the battery when it is dead ( in 2 years approx) that they would save any money. They don't look long term they look at what has to be paid out in one sum. It would be cheaper for them to pay for the surgery and be done with it, than to continue paying for all of the other stupid stuff I have to have. God is still on the throne he has left for one day and he isn't going to. God's will be done.

July 17, 2006
Another day awake at 4am. Pain meds in at 4am and then 8am and then able to go back to a light sleep. Up again at 11:30 awaiting that half an hour for more pain meds. I managed to make it through without taking pain meds again until 3pm. Can't say that they are helping that much anymore. I keep telling myself hold on just another few weeks and this "monster" inside will be out of you.
It is terribly hot outside, probably too hot for me to go out. There are things that I need from the store, it will wait until it gets a little cooler for me.
I have to drive on Wednesday for my pump to be filled. I have an intrathecal pump ( pain pump) it has to be filled about every 6 weeks. If your interested in learning about them the web site is www.medtronic.com this thing helped so much when it was first put in. I went from being bedfast to up and able to bathe myself without assistance. It truly was a gift from God. What I really needed was to have my pancreas removed, but there are few surgeons that are willing to do such a radical surgery. I may have heard of the tp/ict before, but some how didn't think it was for me. With the tube feeding a failure, I feel I have no other option, and I can't continue on the way I am. I will be 40 in the next few weeks and if I don't get off of the pain meds then I am going to have issues related to them. Kidney or liver problems, so the tp/ict must happen. I am however going to be truthful and say that I am not looking forward to it, but it is a means to an end. If I get a 25% reduction in pain then it will be worth it. Today has been bad I may not make it to the store, I will probably be lucky if I get supper fixed for my family before I am back in bed. I didn't get dressed until 3pm, I hate for my husband to come home from work and see me still in my night gown it looks like I haven't done anything. Which is not true, I like the way they hang from my shoulders no pressure around the abdomen or j-tube site. Soon this will no longer be an issue. August 11th get here soon. Better yet make it September 1st so I can be back home, with my husband, daughter and feline children.

July 16,2006
Another week gone by. Getting closer to surgery. I will be glad with this is all over and I am back home. I don't want to leave home, it is my safe harbor, but unless we step out nothing will ever change.
The pain has been a real challenge this week. I am having great difficulties doing what I need to do. I also lack the energy. I am always so tired, that is one of the things about pancreatitis, the fatique is awful. If your not in pain, your too tired to do anything. Sometimes I just have to go to bed for a couple of days and sleep. However, this does seem to help. It is once I am back up, the things that I would have or should have been doing are backing up around me ( laundry, dished,) you get the idea.
Then you wear yourself out again, trying to accomplish the things that are never ceasing.
I missed church again, even went to bed early to go, once the alarm went off, I didn't have enough strength and the pain was to hard to get controlled. I looked at the clock and it was 9:29 not enough time to get ready. I would have been miserable anyway. I checked my e-mail and then went back to lay down, I got terribly sick to my stomach so back to bed for me.
I am spending more and more days in my nightgown, clothing is too uncomfortable. When I do get dressed it is only for a few hours. I think this surgery is coming at the right time, waiting any longer and I will be way too sick.
I have had 2 friends from the internet boards I belong to have this surgery done in the last 2 weeks, and they have had some complications. Hopefully these will be slight set backs and there healing process will begin to kick in and they will get the life they so desperately want.
Some how we learn to live with this, is it God's grace that gets us through. I can't answer that one right now. It surely must be because I haven't the strength for this much more. I remind myself once again that I am fearfully and wonderfully made in the image of God almighty. Nothing surprises him, him the one that numbers the hairs on my head. Him the Great I AM, Him the author and perfector of my faith. I look up to the hills from where my help comes from, for he is with me, carrying me every step of the way that I cannot carry myself. God's will be done.
I think more and more about my husband, daughter and cats. What would their lives be like if I didn't come back. Would they be better off? My grandma once told me about her husband dyings and this is her statement " you never get over it, but someday you learn to live with it". I feel that way about pancreatitis, the person I was died along time ago. The desires the dreams the ideas, the everything is based apon the actions of one diseased organ. If you let it; it will take everything from you. It is a day to day fight sometimes hour by hour or minute by minute. I know that the days of this organ dictating my life are short. Soon it will be out and then life will go on, the way it was suppose to be. Then the things that I had once taken forgranted will become important again, hopefully. I don't want to even think if this surgery is a failure, if it is then I have done everything humanly possible to have rid myself from the monster inside me. I am ready for life to begin again. For some purpose other than maintain pain control. There has to be life away from pancreatitis, there just has to be.

July 14, 2006

Not much going on around here. I have been up since before 5am the usual. Wake up in pain, and try to get it controlled. At least now I have my medication. I was due to have the j-tube changed next week which I thought was a waste of money. So I talked with the radiologist that put it in and he agreed. So the j-tube will stay until surgery. Dr. Sutherland I believe said they would put a different tube in. He said I will have trouble eatting in the beginning so we should probably keep one in there.
I think I am going to sew today. There is only so much one can do at home, and besides there are 2 other adults here. They can do dishes also. I love to sew, usually never feel like it and it takes more than half an hour or an hour to get anything accomplished. I just get my feet wet with an hour and then I get upset. When you don't sew frequently you forget how the machine works and by the time you re orient your self it is time to close up shop.
Once I have recouped from my surgery, I have been thinking about vocational rehab. I hate being at home. I don't know that nursing is in my future, only God know's that one. I will want to return to work, I know that for sure. I liked working, it does something to and for the mind to be productive, or at least feel we are being productive. Sickness and illness occur, but I am not to thrilled about being a Social Security reciever my whole life. I have worked, so feel that I was eligible, but when or if I can return to work I most definitely will work. I need that sense of accomplishment.
Pancreatitis, shows it's ulgy head at the most aweful times. Stress makes it worse, and it has been a stressful week. I do have some good news a friend I met from a board had her tp/ict and was in and out of the hospital in 9 days including discharge day. I think that is pretty awesome.
I am being to have fear of the unknown, but I know I have no choice. I am an only child, and invert in times of stress. I am unique, I can entertain myself and am happy with that. I do realize that the closer the time gets the less I have to say to people. Just me, I am a strange one. I just want it done and over. My birthday is August 3 and I will be 40 this year. I have tried not to celebrate a birthday for a long time, mostly I was just plainly too sick and didn't care. It was just another day of misery. I have birth defects of the pancreas, so for me it was like ok lets celebrate everything that went wrong, somewhere during fetal developement.
It will soon be time to celebrate life without thumpy (our name for my pancreas) my husband can actually put his hand on my abdomen and feel it move. He is a surgical nurse and no it is not the bowel moving, it is the pancreas, it feels like it is trying to push it's way out. Yes, I have thoughts of the "Alien" movie many times. I think next year instead of birthdays we will celebrate my surgical anniversary or liberation day for me.
Still no word for our local newspaper, I didn't think they would pick up the story. I said I am nobody important in this town. That is what is all about, if my family were rich and had donated money to some city event or to the latest cause in town then it would be plastered everywhere. So those people in Richmond, that have pancreatitis will never know that there is a place that can help them. Well off to sew.

July 12, 2006

What a week. My male cat was neutered on Monday. When brought him home (the love of his life, his sister cat) hated him. She wanted to KILL him. They say it has to do with the smell of the vet and it brings back bad memories of being in the pound. I have spent Monday and Tuesday attempting to keep them apart. I got up today and all is well. Thank YOU LORD!! This was absolutely breaking my heart. She would try to beat him up and he would just look real sad at her " what did I do?"" I am sorry" I have pictures of them laying on the back of the couch together so intertwined you can't tell who is who. The thought of them not loving each other was more than I could stand. Apart from our family the only thing they know is each other; as they were cage mates at the pound. But now all is well with the " Atwell's" When the children are happy, mama is happy.
I did some much needed cleaning today, of course I had alot of feline help. It makes things take much longer, but they are an eager bunch to stay right beside mom and learn EVERYTHING!!!!
Pancreatitis, yes, it is still there. I have less than 1 month now before surgery. My mother called our local newspaper to tell them about this and of course I have heard nothing. Probably never will. I am nobody, my family isn't rich, we don't have a prestigious name so it will go know where. Sorry about this color, it is hard to see. At least the grey day is over.
Pain med issues AGAIN. I called for a refill, which isn't the problem. I get my RX's through my husband's work. They know that around every 15-18 days I will need a refill, of course they didn't have enough in the vault. I have to wait until Thursday when the shipment comes in. Oh, I could take the 31 they have and forfeit the rest of the 60. The hateful lady tells me " but you will not get it split up" In my heart of hearts I just wanted to say " did I ask you to split it up?' Some times I want to say " what license do you have?" I know she doesn't she is a pharmacy tech. Then when I come off with the medical lingo and jargon, she realize's oh, no she must be a nurse. I did tell her " if I decide to take the 31 you have and forfeit the other, you will write a letter to my Dr. telling him that you didn't have the rest available and that I DID NOT RECIEVE IT!" Who would be stupid enough to sell the only thing that keeps them from committing the unthinkable, not me. As with everything with pancreatitis, they don't get it either. There is one lady that works in pharmacy there that if looks could kill I would already be dead, she has her preconcieved idea of what I am or what she thinks I am and nothing is going to change that one. Once I went to get an RX and she looked at me, and said something smart. I told her my husband is an employee here and this is where I get my RX's filled. She said " it will be about an hour" I said" fine I will go to the gift shop and look around and I need some tube feeding supplies" I will be back. I just want to tell her" look the Dr. wrote the script I haven't altered it, if you want to call, call he will tell you to fill it" I have had problems with this place as they don't understand why I need pain medication. It just couldn't possibly hurt this bad. There are some there that are alright and will try and help with ordering the tube feeding solution. There have been times where I have wanted to say " are you trying to imply something, don't imply just come right out and say it" I have discussed these issues with my pcp and I have told him, this is a benefit that my husband has, and I am going to use it.
Nobody here wants to talk about surgery, everybody is busy with there own life. Work, school whatever, it is all consuming to them. I don't think that anyone has even considered that I might not come back. I am not saying there will be a problem, but who knows. I think I will cover my butt and get a durable power of attorney for health care decisions. The last thing I want is to end up in some persistant vegitative state hooked to a ventilator. If there is no hope, then turn it off. Sorry but the organs ( what are left of them) are probably destroyed from way too much pain medication. Probably wouldn't hurt to have a will made out either, will keep the arguing to a minimum. I plan on coming home believe that, but I also am a planner by nature. Why else would I have 5 extra bottles of dish liquid in the garage. I think alot of my hoarding comes from being sick and not being physically able to go get what I might need. So the basics of life ( the everyday stuff) is here in bulk.
The cooking food and freezing it is coming along. I just fix a little extra and then what is not eatten it goes in a freezer bag and labeled what it is and the date it was fixed. Should work just fine.
I have been putting more thought into what it will be like having to carry a glucometer and insulin and syringes. I always kept a RX from the box with me just encase I would get pulled over so that I have a prescription on me that explains why I carry narcotics. Now I will need that for the other. If it takes the pain away I will carry cases if need be. Well my shoulder is hurting referred pain from pancreas ( thumpy).
The previous picture was taken when I was about 22 my daughter was about 4-5, How the time goes bye. Notice she is holding on the pool for dear life, now she is a fish when it comes to swimming and ready to turn 22.

July 10,2006
I guess I am in what we call full blown pancreatitis. I have not been dressed since Friday, yes same night gown I put on Friday night. I think I did manage to brush my hair once. I wonder if people come across this and think yeah right, nobody can be this sick. Well I am here to tell you that those of us with pancreatitis, get this sick and we can get sicker than this.
I was suppose to have my male kitten at the vet between 7-8 am today for his neutering. What kind of people make these appointments. I am just going back to sleep at 5 am after being up most of the night. I am never out of bed before 8:45 am. Never. Call me lazy today I really don't care. I am not a lazy person, I get most all of the groceries that come in here, put them up and cook them and by the way I don't eat them ( I have a tube feeding) I do all the laundry that is done around here, wash just about every dish, iron clothes, sweep floors the only thing I can't do is mop or scrub the tub. The repeative motion causes too much pain. I have a lady that mops for me once a month. I usually take a wet cloth and kick it around the kitchen to clean up spills, and that is the truth I use my foot to push it around in the corners and then in the middle of the kitchen. Would it hurt anyone around here to mop, no , but then I know better than to ask.
My daughter Ashley saved the day by getting the kitten to the vet, thank you LORD. He is becoming man cat around here. Yesterday I found a bite mark on my lady cat from where he has been being mean to her. Without those testicles he will calm himself down a whole lot. I looked at him last night those sweet little ( devilish eyes, he is a stinker) and thought I can't do it too him, it will hurt him to bad. These cats at times are the only thing I have to talk too,.I spend so much time alone, with my husband and daughter at work and then both go to school also. I guess I didn't get them from the shelter to be mean to them I got them because everyone else wanted them. I knew I couldn't handle 2 cats, but with the death of our other cat. My family wanted more cats, you guessed it, I feed them, clean their litter boxes, do just about everything for them. The last picture I posted was of my Sheba she has gone to be with Jesus now, but she is far from forgotten. I miss her terribly, she was me in cat form. We had the same personalities, she was so sick. She had triaditis, inflammation of the pancreas, liver and biliary tree, which is a precursor to cancer. She was too sick to continue to live, so I did the thing that cat owner's who love their pets do. I stayed with her while she was put to sleep. There are times I wish that was available for us, it was ever so peaceful.
I have been to sick for too long this time and am becoming quite cynical. There have been times in my life, where I have sat and pondered what did I do to deserve this. I have even said that I was sorry for what ever I did that caused this to happen. I once had the idea that it had to be a punishement for some grave Sin I committed.
Church, is another touchy subject to me now. A few years back they would call me and ask me to fix meals for people that had experienced a death in their family. A birth of a child you name it they call. I started missing church alot this spring ( because of pancreatitis) I get these letters in the mail from our Pastor that say " when your not here your presence is missed" so I make myself go the next Sunday sitting in a pew crying because my back hurts so bad and then the Pastor wasn't there ( he was preaching somewhere else). He knew when he sent me that letter he wasn't going to be there. I don't get it. There have been many times they have repeatedly asked me about pancreatitis. I have had multiple procedures in the last year and been to many different Drs. out of town. We have never recieved one meal ( remember I don't eat). They know that I have pancreatitis, I told myself the last Sunday I went this is the last time, I will not sit in these pews crying in pain. God ( Jesus) knows that I am sick and he understands. I have heard offer it up as a sacrifice of Praise to him. Believe this getting out of bed on Sunday at 8am is sacrifice enough, let alone sit there in misery. It is very obvious to the reader I am grouchy, I am in pain, and I have had about ALL that is humanly possible in the form of pancreatitis.
This disease is more than a disease of the organs in our gut. It makes us hateful from pain, it takes every ounce of enery that we have. There is no life away from it, everything is based apon do I have enough pain medication, do I have enough tube feeding supplies. What do I do if I get to the store and can't finish my shopping. What if I wrecked my car, would they say I am under the influence because I have the intrathecal pump and had pain meds this morning. Would the insurance actually pay a claim if I had one. These are things that people with normal lives don't think about. Yea, the insurance carrier knows I have the pump, but I am not stupid enough to ask should I be driving? Don't get the idea that I sit around " stoned" all the time, it doesn't work that way. I am lucky, if I get relief from the sledge hammer pounding into my back, and the red hot poker or dagger that feels as though it is slowly being pushed into my rt rib area.
I keep hoping that the next day will be better, I have done this now for 10 years. There is of course acute exacerbations of the disease process that make it more painful, as if the daily pain weren't enough.
Someone asked me the other day if this was a release for me, because reading it was a release for them. I haven't figured that out yet. Somedays it seems like one more task to do, other days not so bad.
I have avoided having my picture taken for years, so that if I died my family wouldn't have to relive any of this, so there aren't alot of pictures of me. I regret that one, take pictures, illness is apart of life, just as birth is. Don't let pancreatitis get in your way of life anymore than it already does or had. I will check my archives and see what I can find.

July 9, 2006

I picked gray as my color for the day. I haven't felt well for a few days now. The afternoons get better, but the nights and the mornings well they just truly suck. I am tired of hearing myself yell. I wake up to the sounds of my own painful moaning, and then realize it is me. The pain, Oh, does it ever end. I had taken break thru pain medication 3 times by 12N today. It started at 3am as usual; take my medication and lay there with the TV on waiting for it to work. I think that once I hook up the tube feeding it makes it worse. Dr. Sutherland did tell me he had never seen a tube feeding stop the pain. He said it was like eatting, sure seems like it to me. I know that I can't eat enough to sustain myself. At least my finger nails are growing again, and the little stubs of hair that had broken off are about 2 inches long. That's about the most postive thing I can say for thousands of dollars of tube feedings including the insertion and the rental cost of the pump and pole.
I made hotel reservations for my husband yesterday. I looked at the calendar today and in a month I will be in Minnesota. I am ready for thumpy ( what we call my pancreas) to be out. I wish they could have made the date a little sooner. We live to learn to be more patient. Not our time, but God's time. I haven't been the Godly little trooper I should be, I almost fell down our basement stairs the other day, and said some pretty foul stuff. It really scared me though. I am getting irritated at the smallest things. I don't know if it is the pain, lack of nicotine or just nerves. The smoking thing isn't going the greatest either. One thing is I am starving, I can't eat anything, can't drink anything, so what the heck am I suppose to do. I broke out this old pillow case I was hand embroidering for something to do with my hands. It is so ever blasted ulgy, why did I pick butterflies with sunflowers? Who knows, must have been popular 5 years ago when I started it.
I have a friend that has the tp/ict on Monday, she called today in great spirits. Actually best yet. I am happy for her. This just isn't a life that anyone should have. I don't want pity or people to feel sorry for me. I just sometimes wish that people would acknowlegdge there is a problem. A real problem. I don't want to hear, we are believing that God will heal you. Has it happened yet, NO! No I have to have just about internal organ I have left remove with the exception of my heart and lungs. I guess they don't know what to say. Let me start with a hint, the worst thing to say to someone that is sick is this " Well gee you don't look sick" or Wow you look really good today. One that makes us think the last time you saw us we looked terrible. The gee you don't look sick makes me instantly think " they don't believe it". I have never been one to hold my tongue. I am a straight forward ace in the hole. Tell you like it is, try to keep from hurting your feelings; but if you ask me if I like the outfit you have on and I don't I will tell you truthfully " No I don't like it". It is the same with gift giving. I stopped that many years ago. Now I go buy what I want and hand it to the person and say " Thanks you bought this for me for my birthday" I don't care if I get the money back. There is only one way to make sure you get what you want buy it yourself. So much for my grey day, thank you Lord it is almost 6 pm it is almost over. It will begin again promptly around 3 am that I know for sure. Thumpy your days are numbered, soon it will be your hours are number. Dear pancreas I promise this, you will be laying on a table and then stuck in a solution to dissolve the only good thing about you and the rest I hope they burn. If I didn't need what you held so near and dear I would personally ask for you to stomp on you. Enough said.

July 7,06

I haven't posted in a couple of days. My husband put the picture of our kitties ( children) on the site for me. I am not real computer literate and I was having some problems with the site 2 days ago. Probably more user error than site error.
I have been having alot more pain the past couple of days. Of course the busiest days this week for things that need to done outside the house. I have decided to attempt to make ahead meals for my family and freeze them as individual meals. Time will tell if I have the strength to do this. I have given it alot of thought and think that if I cook one extra thing with supper then I will get it done. I would prefer that they have good meals while I am away and while I am recouperating at home. I have also considered just making extras of what I would cook for supper and freezing that. I am a homemaker by heart, true to the core. I have not one masculine bone in my body. I am a girlie girl to the core.
I have been giving more thought to the idea of insulin dependant diabetes, which I have been told by Dr. Sutherland will more than likely be the case. So, thus I am attempting to stop smoking. Now I wish I have never started, but then who lets a 12 year old smoke? Oh, well that's the past and we go forward. If it keeps me from loosing limbs then it must be done. I did go to get a cigarette the other day and my husband had taken tape and written things like, blindness, toe amputations, kidney failure and stuck it to each pack in the carton. Really makes one think when they reach for one.
I am being to have apprehension regarding the surgery. I will go through with it, it does not mean that I cannot be afraid. I do know that God's hand is in this so it will be alright.
We are beginning here to talk about hotel arrangements for my husband and is driving from Indiana to Minnesota so frequently. He is in BSN school and cannot miss more than one day of school so he will have to return. He is enrolled at Indiana Wesleyan University, this is an intensive 18 month program for previous RN's with families. It meets one night a week and there is so much homework. Mostly papers to write, that man can write a paper. His papers usually end up being at least 20 pages ( easy). I feel bad that he will have to travel so much, and he will have to work on his papers while I am hospitalized. I wish there was a way this could wait until his school was over. I asked him if he wanted me to put this off. He wants for me to be well and have a better quality of life, so thus we proceed forward. That is life if we don't move forward then we are moving backward. The thing about moving backward is that we accomplish nothing. I look at the things in life that I have been given the opportunity to accomplish and I am very grateful. Pancreatitis has kept me from meeting alot of goals that I had set for myself. I think that sometimes things happen so that we don't let the goals of life interfer with what God has planned for us. Sometimes what we plan and what God has planned for us are two different things. Issues are a way of getting back on track for Gods plan. I don't have any word of wisdom about pancreatitis. I know the clincal aspects, I know what the pain feel s like, I know that I dispise it. I only know that I have to try and if this surgery doesn't help then I have done all I can. I have also reduced my pancreatic cancer risk. I try and look at the postives in life. I will close with a picture of my daughter; Ashley. I will mention more about her later

Here are our two cats. They are such a joy to watch.

July 5,2006

I have decided to add the date to each entry so it will be easier to identify.
I spent most of my night awake, in pain, or some degree of discomfort. I usually wake up about 3am and stay awake until about 5-6am. Then take over the rest of the bed after my husband leaves for work and sleep until 9am. It is amazing to me the amount of sleep this disease requires. I am usually in bed by 10:30 and dozing until the pain kicks in. Thank God for Court TV, I am addicted to it. I am a "mystery solving" lady at heart. It started with Nancy Drew books as a young girl, in most movies I can pick the villian in the first 15 minutes max.
Back to the reason I started this. The dreaded pancreatitis, I have met so many amazing people with this disease. As with most diseases it knows no cultural, no gender, socioeconomic boundries. I have met people who have lost about everything they own to pancreatitis. People who would willing work if they could, and find they have to depend on the government for assistance that they have to fight to get. This is wrong, if the technology is available it should be available to all. When I first go sick I had the thought process that if only famous people would get involved and bring this out in to the light. Maybe there would be more funding to find a cure or better treatment options. I wrote many famous people (some that had come out with their own personal health care crisis') to no avail. Our own Vice President had pancreatitis a few years back, from what I believed to be a stone lodged in his common bile duct. It was reported and then dropped.
I never thought that I would live long enough to have this impending tp/ict. The hospitalization through out the years have been many and long. I finally quit going and asked for home care, which was a joke. The nurses were so lazy they didn't even want to try and start an IV. I called an old friend from my days of nursing ( She is turly the one stick wonder) and got it the first try. The home care agency begged me to tell them who started it, are they crazy, she did me a favor all they wanted to do was schedule me for a surgical procedure I didn't want. I wasn't telling anyone.
The hospitalizations have been mainly for low potassium, and magnesium. These are the problems I have had from pancreatitis: the EKG report as two infarcts ( heart attacks) seizures, hypothryodism, urinary retention requiring me to cath myself. Steatorrhea to the point of near renal failure. A few admissions for pain control. I don't think that Drs. are ever prepared for people with pancreatitis. Mainly supportive care, rehydration and pain meds. Replacement therapy of the missing electrolyte and time. I will post another day on treatments for pancreatitis.
I wanted to mention today my other support system. My husband has already been talked about earlier. I have a daughter who is learning to help, she will be 22 soon, where does the time go. I have 2 cats that recently become members of our family. We had an untimely death in April of our beloved cat of 15 plus years. It just wasn't home without the pitter patter of feline feet. Now we have 2, a girl cat named Dora Anne ( after Dora the explorer) long story. A boy named Keliahila (after a super kitty my daugher and her boyfriend watch on the cartoon network). Our Pastor has a daugher named Keliah and I always thought it was such a pretty name thus the cats name. I will put pictures in for everyone to see my children.
I also have to mention my grandmother Thelma Russell who from the year 2000 to 2002 did everything that needed to be done at my home. My husband was in RN school and I was bedfast. I was in bed about 20 hours a day. She is now 85, you can do the math, she is my inspiration. I have always loved her so much, she is like a mother to me ( in my house she is called mamaw) I hope to carry on the tradition some day when I am a grandmother myself.
The surgery, the surgery, it is a scarey thought. No one told me I had to have it. I found out about it myself. Printed out the information from the net and took it to the Dr. and asked to be sent to a certain hospital ( I won't name the place) did their battery of tests ( or their multi thousand dollar test). We made 4 trips total, after they told me they couldn't find my pancreas problems we left. 2 weeks later I got a call that said" the radiologist has reviewed your last ERCP from IU Med and you do have an annular pancreas, pancreatic divisum and SOD, and no minor papilla, the Dr. wants you to have a whipple surgery."
I asked modified or radical ( once a nurse always a nurse) her reply " I don't know he handed me your chart with a post it note stuck to it and said call her" What a joke, we went back to talk with them and they wanted to leave the most diseased part of my pancreas in. I finally realized what they were doing. Do this surgery even if it won't help and then we can do the tp/ict that would really make them alot of money. Plus they had no plan B for surigical complication, the tp/ict needs to have the University of Wisconsin solution available for islet isolation, it would not have been there, God only knows what kind of mess I would have been in. People take note " when your gut feeling says walk, walk don't look back there are some not so nice people in health care" I was always taught patient care comes before anything, not anymore health care is a business and the people at the top look only at the final dollar. It is not about the patient anymore it is about the profitablity, even for non- for profit hospitals. I am long winded and have alot to say, this is my passion. I want so to return to nursing, God's will be done. I think God knew that I would need this knowledge for when to say enough is enough. I don't know what I would have done without all of the knowledge I have learned over the years as a nurse. I probably would have had alot of things done that were definitely not necessary. Life is what you make it, you take every day one day at a time. Some days are an hour at a time, you push forward, keep going, one step equals two and then three. Before you know it you have completed your task, there is always another task awaiting but that is life. I am not afraid to die, I would however prefer to stay here with my family. I would gladly trade this life for a life with Jesus. But that is his say, when he calls me home believe me when I say this but once in his wonderful glorious presence I will want to stay with him. I would probably say " Love you all, I will be waiting for you, but I don't want to come back now". God's love is extravagant!

I made this pair of pants. I hate trying to buy clothes, nothing ever fits. My abdomen is larger than the rest of me. Making it hard to find clothes that fit in the belly. Uusually purchased clothes are huge in the hips or rear if they fit around me.You can see my dressing for my j-tube, I had worked on these for about an hour, you can see that I am very tired. The tail on the back is the elastic that I had inserted, I had my husband take a picture so I could get a good look at how they fit and to see what they really looked like on me. I love to sew, and do crafty type things. My illness takes alot out of me, and I don't usually feel like doing anything. If I get done what needs to be done for my family I am doing well. The pants were too big, I have still never finished them. Oh, well at least I tried. It is terribly difficult to get up and down the basement stairs with the tube feeding. I have to take it off the pole and carry the bottle and then put it on another pole and keep it plugged in, the battery doesn't work very well.

Here is a picture of my husband and me taken in 2005.

I have suffered from pancreatitis for 10 years now. I have been through a medical nightmare. I was born with a lot of birth defects of my pancreas. Annular pancreas, pancreatic divisum, sphinter of oddi disfunction, and no minor papilla. These are what we know currently. I have been scheduled at the University of Minnesota to undergo what is known as a total pancreatectomy with an islet cell transplant. The pancreas is removed and the insulin and glucagon making cells are isolated and harvested, the duodenum and spleen are removed. The pancreas is placed into University of Wisconsin solution to digest the organ and release the islet cells and then they are infused on to the liver and the portal vein. I have read that sometimes heparin is used, apparently this helps the islets to settle in.
I am scheduled for surgery August 11, 2006. This surgery would not be possible without the help of my God Jesus Christ my King. And of course a very supportive spouse Michael Atwell. This man has stood beside me, when most would have probably walked away. We met and fell in love, and he knew from the very beginning that I was sick. He never waivered in his commitment to me, or my disease process. There have been many times Drs. have not believed me, and when the final diagnosis was given, he said " I have never doubted you once, I knew you had pancreatitis. I dedicate this blog to my husband, lover, friend to you Michael Atwell. I truly believe that God put us together. Without you I would have never lived this long. I wake up everyday and push forward for you, you are the reason I keep going. I will try and make a daily post as to what it is like to have chronic pancreatitis, what it is that we go through, the good the bad and the ugly. If you happened here because you googled pancreatitis I can lead you to more board sites that will be mentioned at another time, as I will need their permission to list.
Pancreatitis, is medically known as inflammation of the pancreas. Most consider it a disease of alcohol abuse. I for one am not an alcoholic and have never been. As I stated earlier I was born with defects of the pancreas, for what reason, only God himself knows. But for those of us out there I will say that "I am fearfully and wonderfully made" and that" I am made in the image of God Almighty" by his own wonderful hand. God makes no mistakes. Please sit back with a cup of coffee and begin to read my life, it will be a "good read". I will show you that with perseverance and a lot of help from God that those of us with this disease can and will do what ever it takes to live a normal existence. There are a lot of hardships along the way. Governmental assistance such as SSD which takes too long to get and is a horrible fight. Attempting to find a pain management Dr. or any Dr. that has any clue about pancreatitis can be a nightmare in it's self. Drs. who only want to make more money by doing procedures that have little to no postive effect. Being deemed a drug seeker or addicted to medication, that I need to keep myself as comfortable as possible. The pain never goes away, it only becomes tolerable with enough medication. I have an implanted intrathecal pump (pain pump) which has helped a lot, but it does not stop the damage that is being done on a daily basis, by an organ attempting to digest food, which is in reality only digesting itself. I have a tube inserted into my small bowel for nutrition that is called a J-tube. I eat no food as food is too painful, it stimulates the pancreas to digest the food and the cycle of pancreatic digestion starts again. I wake up most days unable to walk until I have taken pain medication. Some days I wake up to the sound of my own voice screaming from pain. Some times I wake up to my husband saying "Baby open your mouth your crying in your sleep" attempting to put pain medication in my mouth. This is a disease I would not wish on anyone. I personally believe that sometimes we as people become so obsessed with things of the world that we have to go through some trying times so that when those times are over we will truly understand how sweet the taste of life can really be. I will close with this, it is true what doesn't kill you does make you stronger.