August 4, 2006
Well one year older nower, still don't feel any different than I did the year I turned 8 and got my purple bike with the big white basket on the front ( I hated the basket) it was 70's still with big flower " flower power". I mean inside I don't feel any different. The body however is shot and I know that one.
I went to the pcp yesterday before going to MN. I wanted to have everything available to me, I know MN provides insulin syringes and such, but I don't want to get loaded down with all that stuff and have to make my way by myself through the airport.
I asked for a few more Actiq as my needs have been higher with the levels of pain. My pcp the greatest of Drs. just looked at me, I know that disappoving look, what am I suppose to do get to MN and run out.
My nerves are gone, I am terrified, the nurse in me knows what they are doing, and everything says " don't do it, back out" but if I let this opportunity pass me by, I won't get it again. When I think about it I cry. So there probably won't be many posts by me until my husband posts from the hospital.
I have to go to get my pump filled today as there is not enough medication in there to last for the post op period, it is a must. Plus almost a 200 miles drive total. On the way back from the Dr. yesterday my maintence required light came on Yet I have to drive today and then MN this week. I called it the dealership it is a reminder to have the oil changed, for which I made an appointment for Saturday. I cannot imagine life without the way it has been for so long, the pain, the hassels, I will trade this away in a heart beat to be normal again.
It is the fear of the unknow that always gets me, I am worried about my husbands safety traveling back and forth for school. But there is no one else to help, so we do what we have to and hope this works. I don't have the strength to think if this doesn't work, what I will do if this is not a success, I can't let my mind go there. Deal with one thing at a time.
The last thing I want to say is that if someone with a family is reading this and they have a person they know that has pancreatitis. The pain you see if real, it is not made up, we don't know what to do or how to handle it either, if we could stop it we would. No Dr. usually knows what to do with us, we are the faceless the the crowd of ill people. I have heard pancreatitis described as an invisible disease because you can't tell by looking at the person. The pain we feel is real, the social isolation is horrible we feel so alone, because no one understands. People that really CARE try to be available for us, to help us, but it makes us feel worse, because the last thing we want is to be a burden. We hope, we wait for life to return to what it once was, and it never comes back. Days turn to months, and months turn to years and nothing changes, everyday it is still the same pain. No running away, no getting away, no where to avoid the God aweful pain. People begin to call us " drug addicts" and look down upon us, we loose our independence because we can't work anymore. It just sucks. Have I planned suicide before you betcha as most of us do. I was going to hang myself in the gargage until I realize my daughter would be the first one in the garage coming home from school, that wouldn't work, I couldn't let her find me like that. So I chose not to do that, no I only traumatized her childhood and young adult life while watching someone slowly die, from pain. The screaming and yelling and pacing the floors, the hospitalizations not knowing what each day would hold. For that I am truly sorry, if I could have changed it I would. Maybe it made her the person she is today, maybe someday she will meet a person as a nurse with pancreatitis and remember Oh, yea, I know how bad this is; my mom lived like this and she will be a better person and more appeciative of a life without pain, and treat people better with pancreatitis than a nurse who has never seen it.
I am closing my part of this today, I hope you all that have read have learned something about us, we are humans who deserve to be treated with respect. You never know you may wake up some day your life forever altered by an organ gone bad, because of nothing you have done. Bad things happen to good people, why, the eternal question; that one I can't answer. Strive for the best, never give up, keep putting one foot in front of the other, eventually it makes a step and then two. And before you know it you have won the race of life.
Mrs. Michael "Lisa" Atwell
Well one year older nower, still don't feel any different than I did the year I turned 8 and got my purple bike with the big white basket on the front ( I hated the basket) it was 70's still with big flower " flower power". I mean inside I don't feel any different. The body however is shot and I know that one.
I went to the pcp yesterday before going to MN. I wanted to have everything available to me, I know MN provides insulin syringes and such, but I don't want to get loaded down with all that stuff and have to make my way by myself through the airport.
I asked for a few more Actiq as my needs have been higher with the levels of pain. My pcp the greatest of Drs. just looked at me, I know that disappoving look, what am I suppose to do get to MN and run out.
My nerves are gone, I am terrified, the nurse in me knows what they are doing, and everything says " don't do it, back out" but if I let this opportunity pass me by, I won't get it again. When I think about it I cry. So there probably won't be many posts by me until my husband posts from the hospital.
I have to go to get my pump filled today as there is not enough medication in there to last for the post op period, it is a must. Plus almost a 200 miles drive total. On the way back from the Dr. yesterday my maintence required light came on Yet I have to drive today and then MN this week. I called it the dealership it is a reminder to have the oil changed, for which I made an appointment for Saturday. I cannot imagine life without the way it has been for so long, the pain, the hassels, I will trade this away in a heart beat to be normal again.
It is the fear of the unknow that always gets me, I am worried about my husbands safety traveling back and forth for school. But there is no one else to help, so we do what we have to and hope this works. I don't have the strength to think if this doesn't work, what I will do if this is not a success, I can't let my mind go there. Deal with one thing at a time.
The last thing I want to say is that if someone with a family is reading this and they have a person they know that has pancreatitis. The pain you see if real, it is not made up, we don't know what to do or how to handle it either, if we could stop it we would. No Dr. usually knows what to do with us, we are the faceless the the crowd of ill people. I have heard pancreatitis described as an invisible disease because you can't tell by looking at the person. The pain we feel is real, the social isolation is horrible we feel so alone, because no one understands. People that really CARE try to be available for us, to help us, but it makes us feel worse, because the last thing we want is to be a burden. We hope, we wait for life to return to what it once was, and it never comes back. Days turn to months, and months turn to years and nothing changes, everyday it is still the same pain. No running away, no getting away, no where to avoid the God aweful pain. People begin to call us " drug addicts" and look down upon us, we loose our independence because we can't work anymore. It just sucks. Have I planned suicide before you betcha as most of us do. I was going to hang myself in the gargage until I realize my daughter would be the first one in the garage coming home from school, that wouldn't work, I couldn't let her find me like that. So I chose not to do that, no I only traumatized her childhood and young adult life while watching someone slowly die, from pain. The screaming and yelling and pacing the floors, the hospitalizations not knowing what each day would hold. For that I am truly sorry, if I could have changed it I would. Maybe it made her the person she is today, maybe someday she will meet a person as a nurse with pancreatitis and remember Oh, yea, I know how bad this is; my mom lived like this and she will be a better person and more appeciative of a life without pain, and treat people better with pancreatitis than a nurse who has never seen it.
I am closing my part of this today, I hope you all that have read have learned something about us, we are humans who deserve to be treated with respect. You never know you may wake up some day your life forever altered by an organ gone bad, because of nothing you have done. Bad things happen to good people, why, the eternal question; that one I can't answer. Strive for the best, never give up, keep putting one foot in front of the other, eventually it makes a step and then two. And before you know it you have won the race of life.
Mrs. Michael "Lisa" Atwell
posted by Lisa Atwell | 9:43 AM
1 Comments:
wow you really hit on some good POINTS for others who arent suffering to understand!
ALSO:: you wrote:""I went to the pcp yesterday before going to MN. I wanted to have everything available to me, I know MN provides insulin syringes and such, but I don't want to get loaded down with all that stuff and have to make my way by myself through the airport""
are you coming home on your own?? if so PLEASE call ahead and tell flight you are on! you will be met at door with wheelchair loaded first on plane, at destination youll be the last off , but wheeled and THEY will get all your stuff! i fretted over syringes and such (security) but heck they never bothered. i packed most in suitcase and took enough on the plane in a carryon and had no issues! Hang in there~! i told jerry when he came out of surgery and HOPEFULLY you will remember this`:::: as you are in the most pain, remember THIS IS THE LAST pain that MR THUMPY will EVER cause you! IF you can get thru this you will be FREE! i would tell jerry let it come! bring it on! because its the LAST EVER PAIN he will feel from MR P! The walk thru the fire is DONE! you have survived and will heal now. JUST hang in , do all they tell you to do and KNOW you will be done with this in the end! you are going to be soooo surprised when you find out what your pancreas REALLY looked like from dr.S!! REMEMBER if you can live thru TEN YEARS OF THIS HELLACIOUS TORTURE, you can do this after the surgery!!
somehow you must set your mind.. KNOW know you will be in pain after surgery (but will be given meds) but it will be the LAST OF IT! whoo hoo! also jerry was on soooo much narcs and so tolerant that dr. s said he was also concerned about pain control during and after surgery .. but IT WAS controlled! they did it! also any one going with you, will wait in the surgery waiting area, and they will recieve many phone calls to update and let them know how you are doing and during the "break"time dr S will come out and chat with them personally! YOU WILL DO GREAT~!!!!!! also know many read and may not respond to your posts but read daily! keep it up and know we are all behind you girl! i wish i had money! id be there for everyone that goes! Hang in and KNOW it will be better !!!!!
Post a Comment
<< Home