4/18/06
Just a quick overview of WHAT exactly causes the pain since some people have asked and I seem to talk about it on a daily basis with at least one person, so here goes. The quick version.
I have a degenerative nerve disorder callled PERIPHERAL NEUROPATHY. People with diabetes, HIV, or Cancer are most susceptible or likely to get it. I have had diabetes since July of 1997 and weighed 410 lbs at that time.
In October of 2002 I was doing a gig with my band at the time, ELENORA. While I was carrying my gear down the steps of the venue I felt a shooting stabbing pain in both legs and feet that almost made me balck out. A few weeks of agony later and some doctor's visits and I was diagnosed. I was told that it would gradually progress and get worse as time went on. There are two forms : one you have numbness and loss of feeling in your extremeties. the second, what I have, you have NO pain buffers and basically are hypersensitive to everything and have like 10-15 times the increased sensation, ergo I can't walk around barefoot at all, walking, sitting, standing, etc., are all extremely painful and difficult. I continued to work until Jan 2005. I was having lunch with my wife and kids at my fav restaraunt (now gone) and I slipped into a diabetic coma. I woke up later that night in the hospital and was signed out on temp disability. 6 weeks later my appendix ruptured. 2 months later my digestive system failed and I spent almost the entire month of May in the hospital. At this point I weighed 125 lbs and had become addicted to morphine, darvocet, and a plethora of other meds (I was prescribed about 25 at this point). In July, I blacked out while driving (with wife and 4 kids in backseat). More time in the hospital. By the end of August I had realized I was an addict out of control and asked my docs to put me in rehab to get off all the drugs. They said no but cut my morphine dose in half and 72 hours later on Sept.4th I stopped breathing and had a mild heart attack. My BP was 55/29 and I had no pulse, basically I was DOA when I got to the hospital and they brought me back. I came home on the 7th against doc's wishes and the next day turned 34. Hell of a B-day present. I got a heartbeat and a second chance. I started a 12 step program and got off ALL the meds except my insulin. I put some weight back on (I say I feel fat now, but everybody says I'm nuts that I'm still too thin) and the pain as you have heard me bitch about time and time again makes me miserable as all get out. I try to keep a sense of humor about the whole thing and I have the support of my wife and kids and more wonderful friends than I can count, but I get down with the sickness (DISTURBED BABY!!! OOH AH AH AH AH !) sometimes and can barely move. I am drawing permanent disabilty payments form the govt., never have to work again, have a placard in my car and yup, I walk with a cane with great difficulty, so I no longer hike, surf, play sports, or anything else like that that I just miss. But I am ALIVE to see my kids grow up and now with the new baby coming, I'm happy 99% of the time. I don't want anybody's pity or sympathy, just comprehending what I deal with is enough for me. And I don't mind the helping hands either. I lack the strength and ability to do alot of things now that most take for granted. Even sitting here at the computer typing becomes tiring/painful after a while as the damage has spread to my arms and hands at this point. Hence all the tattooing helps me deal with the pain by shifting my focus.
I have been told by a few neurologists that mine is the worst case they have ever seen in someone my age and the worst case they have ever seen , period! MY prognosis is basically 10 years max at this point. As I said thie disease is degenerative, therefore it destroys you (me) over time and will render me immobile at some point and eventually kill me as it destroys my organs, tissue, muscles, etc. Let's just hope it takes it's time so I'm around for my kids as long as possible. I'm sorry for such a grim entry, It's not anything I have a prob talking about as it tends to rule my days, but I figured since some of you have asked instead of sending out 20 explanations I would just put it in here for all to read. And on that note....
Just a quick overview of WHAT exactly causes the pain since some people have asked and I seem to talk about it on a daily basis with at least one person, so here goes. The quick version.
I have a degenerative nerve disorder callled PERIPHERAL NEUROPATHY. People with diabetes, HIV, or Cancer are most susceptible or likely to get it. I have had diabetes since July of 1997 and weighed 410 lbs at that time.
In October of 2002 I was doing a gig with my band at the time, ELENORA. While I was carrying my gear down the steps of the venue I felt a shooting stabbing pain in both legs and feet that almost made me balck out. A few weeks of agony later and some doctor's visits and I was diagnosed. I was told that it would gradually progress and get worse as time went on. There are two forms : one you have numbness and loss of feeling in your extremeties. the second, what I have, you have NO pain buffers and basically are hypersensitive to everything and have like 10-15 times the increased sensation, ergo I can't walk around barefoot at all, walking, sitting, standing, etc., are all extremely painful and difficult. I continued to work until Jan 2005. I was having lunch with my wife and kids at my fav restaraunt (now gone) and I slipped into a diabetic coma. I woke up later that night in the hospital and was signed out on temp disability. 6 weeks later my appendix ruptured. 2 months later my digestive system failed and I spent almost the entire month of May in the hospital. At this point I weighed 125 lbs and had become addicted to morphine, darvocet, and a plethora of other meds (I was prescribed about 25 at this point). In July, I blacked out while driving (with wife and 4 kids in backseat). More time in the hospital. By the end of August I had realized I was an addict out of control and asked my docs to put me in rehab to get off all the drugs. They said no but cut my morphine dose in half and 72 hours later on Sept.4th I stopped breathing and had a mild heart attack. My BP was 55/29 and I had no pulse, basically I was DOA when I got to the hospital and they brought me back. I came home on the 7th against doc's wishes and the next day turned 34. Hell of a B-day present. I got a heartbeat and a second chance. I started a 12 step program and got off ALL the meds except my insulin. I put some weight back on (I say I feel fat now, but everybody says I'm nuts that I'm still too thin) and the pain as you have heard me bitch about time and time again makes me miserable as all get out. I try to keep a sense of humor about the whole thing and I have the support of my wife and kids and more wonderful friends than I can count, but I get down with the sickness (DISTURBED BABY!!! OOH AH AH AH AH !) sometimes and can barely move. I am drawing permanent disabilty payments form the govt., never have to work again, have a placard in my car and yup, I walk with a cane with great difficulty, so I no longer hike, surf, play sports, or anything else like that that I just miss. But I am ALIVE to see my kids grow up and now with the new baby coming, I'm happy 99% of the time. I don't want anybody's pity or sympathy, just comprehending what I deal with is enough for me. And I don't mind the helping hands either. I lack the strength and ability to do alot of things now that most take for granted. Even sitting here at the computer typing becomes tiring/painful after a while as the damage has spread to my arms and hands at this point. Hence all the tattooing helps me deal with the pain by shifting my focus.
I have been told by a few neurologists that mine is the worst case they have ever seen in someone my age and the worst case they have ever seen , period! MY prognosis is basically 10 years max at this point. As I said thie disease is degenerative, therefore it destroys you (me) over time and will render me immobile at some point and eventually kill me as it destroys my organs, tissue, muscles, etc. Let's just hope it takes it's time so I'm around for my kids as long as possible. I'm sorry for such a grim entry, It's not anything I have a prob talking about as it tends to rule my days, but I figured since some of you have asked instead of sending out 20 explanations I would just put it in here for all to read. And on that note....
VIEW 5 of 5 COMMENTS
snakelover:
Thanks for the explanation .I was wondering. I myself , would probably go for the morphine ,i'm such a wimp! Hang in there!
ta2dmom:
DAMN! The fact that you go it w/o the aid of meds is what impresses me. I get a headache and want to run for the lortab.And the fact that you weighed 410 lbs is shocking. Thanks for explaining. I know I was one of those people asking all the time. Thanks for letting me know. You are one very brave guy. I'll keep good thoughts for you so you can hang out to watch the kids grow. 