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 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!
posted by Lisa Atwell | 11:28 AM
1 Comments:
My family has told me how horrible it was for my son to be in our home with his father so sick. I tell them, are you kidding? it will make him stronger, more compassionate and smarter as well as aware of his own health for his own sake! I am sure your daughter is the same. It surely makes us not judge people after being through the wringer with this disease. What a wonderful helper you have and such a great age! TELL HER we said Shes great and will never know how much she is appreciated! It is very hard being a caregiver sometimes. But so rewarding!
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