Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Hi Tina, Something you said caught my eye <<a life-long history of unusual amounts of stress (starting with being raised by generations of alcoholics) >> My Mom suffered from mental illness and abused me both physically [by beating me and attacking me in my sleep] as well a constantly cursing me and putting me down, especially in front of others. I know group members who have similar, and even worse stories of abuse. And I know friends who were abused but did not come down with EN/PG. It seems to me that we who were abused must have had a weakness in our immune or nervous system from birth. The abuse may have tipped us over the edge to overt illness. I agree we are probably damaged beyond the reach of perfect health, and I think you are right in that we must do what we can to remove stresses from our lives in any way we can to keep the delicate equilibrium of what passes for us as good health. Please Group, don't look at this as negative! We who have suffered with chronic EN/PG are not the same, in my opinion, as the " one timers " . As Tina and Jeff have stated " the damage is done " . Love, idio. EN '68 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 tina, if i read you correctly, you are saying you think you have damaged your immune system beyond repair. i find that interesting. can you explain how you know this? or is this a gut feel from the years of issues you have had? almost sounds like you are looking at an accumlative effect......not sure we know enough about our immune system to say that the host of issues you have been thru necessarily " accumulate " to wear down your immune system. guess i am looking for a brighter outlook to your situation. are you assuming the worst? not trying to put you on the spot, but you may be directing yourself at something, not only do you have no control of what happened in your past, but at something that may not even work in such a way at all. jeff > > Thanks again, Jeff, for the time you spent on your reply. And thank > you for your exhaustive reseasrch. Could you please help me with a > short cut. Thanks for pointing out the difference between en triggers > and pg underlying causes. Where can I find a list of the 20 underlying > causes? > > I did not mean to imply that there were natural cures. I was pointing > out natural stresses to my immune system that were quite significant, > and sustained over decades because it took me until my mid forties to > realize my food sensitivities. Once I made the diet changes, the extent > of my reactions became very obvious because of the remarkable > improvements. But with all that appreciated, I certainly realize that > my immune system is damaged beyond what I can effect with dietary > changes. I don't think I can undo the damage that has been done. (But I > would like to avoin doing even more damage if there are triggers I > might avoid.)Between all the food and chemical sensitivities, allergy > history, and chemo and radiation treatments for Hodgkin's, and a life- > long history of unusual amounts of stress (starting with being raised > by generations of alcoholics) - I think it would be nieve to think that > I can reverse the immune damage with some homeopathic remedies, > nutriceuticles and organic foods. But I do these things in hopes of > pampering my immune system. > > I wasn't reaching out fishing for natural remedies. I was curious to > see if others had similar personal health histories. I love the " poll " > section. I was a sociology major. I have an active curiosity about > researching what people have in common form the past once they realize > they have something common in the present. > Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2008 Report Share Posted January 2, 2008 Hi Jeff, Not trying to indicate any feelings or beliefs of "beyond repair". Just trying to tweek my previous message which seemed to get you thinking that i was nieve enough to think a health food diet was going to cure me right away. You seemed to relly take issue with that. Oh how this message from you underlines my fervent wish for a doctor who would address my immune system, especially a common sense overview about what could have upset it so, and what could calm and heal it!!!!!!!!!!!! I certainly don't have any expertiese and am left to wonder in the info void. In my message, you read me wondering. Every specialist sends me to a different type of specialist, around in circles for years, feeling like a hot potato. And NOT A SINGLE ONE has ever talked to me about my immune system, though they all finally agree that I have PG, which is an autoimmune disorder. After all of the specialistists I have seen, I still don't even know what branch of medicine best deals with the immune system. They all look at me like deer in the headlights. The specialists send me back to internal medicine and IM sends me back to specialists. And the specialists send me to different specialists and then I get sent back to the internal medicine people again. this went on for three years before I got a diagnosis, and I only got pain medicine prescribed for the first time in Nov. (and now all the doctors are playing hot potato again about who should order refills). And some can't guess why I think I might need disability now that I am admitting that it isn't going to just go away like a scraped knee or a bad case of poison ivy; now that I know it can get severe enough to put me in a wheelchair for a few months and prevent me from being able to sleep or function in basic self care. Now that I realize how much work time I have been missing. Reading the emails in this self help group is the first validation I have received about how painful this condition can get in it's most inflamatory stages; what an incredible amount of time it takes just to bathe and change dressings........................ I have been a Pollyanna all my life. I have always known how to put a happy face on anything and everything. This PG is a challenge to my uplifting imagination. With the lack of a fatherly or motherly medical figure to come along and fix my booboos, denial seemed like a good policy. Surrendering to the severity of this condition is quite a sobering task since I have been reading these EN site messages for the past few days. TinaJeff wrote: tina,if i read you correctly, you are saying you think you have damaged your immune system beyond repair. i find that interesting. can you explain how you know this? or is this a gut feel from the years of issues you have had? almost sounds like you are looking at an accumlative effect......not sure we know enough about our immune system to say that the host of issues you have been thru necessarily "accumulate" to wear down your immune system. guess i am looking for a brighter outlook to your situation. are you assuming the worst? not trying to put you on the spot, but you may be directing yourself at something, not only do you have no control of what happened in your past, but at something that may not even work in such a way at all.jeff>> Thanks again, Jeff, for the time you spent on your reply. And thank > you for your exhaustive reseasrch. Could you please help me with a > short cut. Thanks for pointing out the difference between en triggers > and pg underlying causes. Where can I find a list of the 20 underlying > causes?> > I did not mean to imply that there were natural cures. I was pointing > out natural stresses to my immune system that were quite significant, > and sustained over decades because it took me until my mid forties to > realize my food sensitivities. Once I made the diet changes, the extent > of my reactions became very obvious because of the remarkable > improvements. But with all that appreciated, I certainly realize that > my immune system is damaged beyond what I can effect with dietary > changes. I don't think I can undo the damage that has been done. (But I > would like to avoin doing even more damage if there are triggers I > might avoid.)Between all the food and chemical sensitivities, allergy > history, and chemo and radiation treatments for Hodgkin's, and a life-> long history of unusual amounts of stress (starting with being raised > by generations of alcoholics) - I think it would be nieve to think that > I can reverse the immune damage with some homeopathic remedies, > nutriceuticles and organic foods. But I do these things in hopes of > pampering my immune system.> > I wasn't reaching out fishing for natural remedies. I was curious to > see if others had similar personal health histories. I love the "poll" > section. I was a sociology major. I have an active curiosity about > researching what people have in common form the past once they realize > they have something common in the present.> Tina Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 tina, i realize it went beyond health food diet, but yeah, i truely don't believe that or lack of it, or anything we personally do makes this appear, therefore i don't believe any of that will make it go away. i was wondering about your episodes with doctors. i was getting the same thing. don't know if you can manage this, but i went to a medical school, in my case university of michigan medical center. looking back, i can see this was the ONLY WAY i was going to get help with a very stubburn pg case. even my local docs i see now realize (because we have had conversations about this)they will need to send me back there if my case gets difficult. too bad the other set of docs i had in the beginning didn't realize that. they mis-dx'ed me and consequently was treated with the wrong meds that, in some cases, exuberated my symtoms, especially my crohns. i think sometimes ourselves and our docs don't know when to say we have met our limit and we need to go to the experts. you are absolutely correct, it is easier for them to pass you along to someone else and now you become their headache. since being involved with u of m's grand rounds, i don't believe in their medical training are they taught to identify patients that truely need to go to a medical teaching center. if i get back there this year, i will have that conversation with my lead derm doc there. unfortunately, due to the job situation and at the time i was contracting on an hourly basis, i could not go to the derm grand rounds last month. first time i missed this in 5 years love, jeff pg, cd > > Hi Jeff, > Not trying to indicate any feelings or beliefs of " beyond repair " . Just trying to tweek my previous message which seemed to get you thinking that i was nieve enough to think a health food diet was going to cure me right away. You seemed to relly take issue with that. > > Oh how this message from you underlines my fervent wish for a doctor who would address my immune system, especially a common sense overview about what could have upset it so, and what could calm and heal it!!!!!!!!!!!! I certainly don't have any expertiese and am left to wonder in the info void. In my message, you read me wondering. > > Every specialist sends me to a different type of specialist, around in circles for years, feeling like a hot potato. And NOT A SINGLE ONE has ever talked to me about my immune system, though they all finally agree that I have PG, which is an autoimmune disorder. > After all of the specialistists I have seen, I still don't even know what branch of medicine best deals with the immune system. They all look at me like deer in the headlights. The specialists send me back to internal medicine and IM sends me back to specialists. And the specialists send me to different specialists and then I get sent back to the internal medicine people again. this went on for three years before I got a diagnosis, and I only got pain medicine prescribed for the first time in Nov. (and now all the doctors are playing hot potato again about who should order refills). And some can't guess why I think I might need disability now that I am admitting that it isn't going to just go away like a scraped knee or a bad case of poison ivy; now that I know it can get severe enough to put me in a wheelchair for a few months and prevent me from being able to sleep or function in basic self care. Now that I realize how much work time I have been missing. > > Reading the emails in this self help group is the first validation I have received about how painful this condition can get in it's most inflamatory stages; what an incredible amount of time it takes just to bathe and change dressings........................ > > I have been a Pollyanna all my life. I have always known how to put a happy face on anything and everything. This PG is a challenge to my uplifting imagination. With the lack of a fatherly or motherly medical figure to come along and fix my booboos, denial seemed like a good policy. Surrendering to the severity of this condition is quite a sobering task since I have been reading these EN site messages for the past few days. > Tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Hi Jeff,<<unfortunately, due to the job situation and at the time i was contracting on an hourly basis, i could not go to the derm grand rounds last month. first time i missed this in 5 years >>That really stinks! I know that every dr. and med student that meets you in Grand Rounds makes a difference in the way that future PG patients are treated. Amazing how so many things in life are interconnected. The economy leads to your job upheaval and that causes you to miss a Grand Rounds which years from now will affect a PG patient. Just an observation.Love, You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum! Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 ATTEN: " twebwalker " Hi, Who knows??? There may be a " Natural Cure " someday. And,there may be...in some far off land used by some Native Tribe. After all our bodies are natural. If we knew the answer, wouldn't that be nice!!! > > > > Thanks again, Jeff, for the time you spent on your reply. And > thank > > you for your exhaustive reseasrch. Could you please help me with a > > short cut. Thanks for pointing out the difference between en > triggers > > and pg underlying causes. Where can I find a list of the 20 > underlying > > causes? > > > > I did not mean to imply that there were natural cures. I was > pointing > > out natural stresses to my immune system that were quite > significant, > > and sustained over decades because it took me until my mid forties > to > > realize my food sensitivities. Once I made the diet changes, the > extent > > of my reactions became very obvious because of the remarkable > > improvements. But with all that appreciated, I certainly realize > that > > my immune system is damaged beyond what I can effect with dietary > > changes. I don't think I can undo the damage that has been done. > (But I > > would like to avoin doing even more damage if there are triggers I > > might avoid.)Between all the food and chemical sensitivities, > allergy > > history, and chemo and radiation treatments for Hodgkin's, and a > life- > > long history of unusual amounts of stress (starting with being > raised > > by generations of alcoholics) - I think it would be nieve to think > that > > I can reverse the immune damage with some homeopathic remedies, > > nutriceuticles and organic foods. But I do these things in hopes of > > pampering my immune system. > > > > I wasn't reaching out fishing for natural remedies. I was curious > to > > see if others had similar personal health histories. I love > the " poll " > > section. I was a sociology major. I have an active curiosity about > > researching what people have in common form the past once they > realize > > they have something common in the present. > > Tina > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 " It seems to me that we who were abused must have had a weakness in ourimmune or nervous system from birth. The abuse may have tipped us overthe edge to overt illness. " <<< I think you may have something there! ~*~ I can't remember, , if I mentioned my mother was an alcholic. Heck, right there comprimises our newborn bodies. (* > > Hi Tina, > Something you said caught my eye > <<a life-long history of unusual amounts of stress (starting with > being raised by generations of alcoholics) >> > > My Mom suffered from mental illness and abused me both physically [by > beating me and attacking me in my sleep] as well a constantly cursing > me and putting me down, especially in front of others. > > I know group members who have similar, and even worse stories of abuse. > > And I know friends who were abused but did not come down with EN/PG. > > It seems to me that we who were abused must have had a weakness in our > immune or nervous system from birth. The abuse may have tipped us over > the edge to overt illness. > > I agree we are probably damaged beyond the reach of perfect health, > and I think you are right in that we must do what we can to remove > stresses from our lives in any way we can to keep the delicate > equilibrium of what passes for us as good health. > > Please Group, don't look at this as negative! We who have suffered > with chronic EN/PG are not the same, in my opinion, as the " one > timers " . As Tina and Jeff have stated " the damage is done " . > > Love, > > idio. EN '68 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Hi Tina, I hear ya!!! I have been put thru " The Circle " , too. Gets old, huh? The only humor in all that is...when you wind up back with the Dr. you started with and he doesn't remember you. ahhh man *lol* > > > > Thanks again, Jeff, for the time you spent on your reply. And > thank > > you for your exhaustive reseasrch. Could you please help me with a > > short cut. Thanks for pointing out the difference between en > triggers > > and pg underlying causes. Where can I find a list of the 20 > underlying > > causes? > > > > I did not mean to imply that there were natural cures. I was > pointing > > out natural stresses to my immune system that were quite > significant, > > and sustained over decades because it took me until my mid forties > to > > realize my food sensitivities. Once I made the diet changes, the > extent > > of my reactions became very obvious because of the remarkable > > improvements. But with all that appreciated, I certainly realize > that > > my immune system is damaged beyond what I can effect with dietary > > changes. I don't think I can undo the damage that has been done. > (But I > > would like to avoin doing even more damage if there are triggers I > > might avoid.)Between all the food and chemical sensitivities, > allergy > > history, and chemo and radiation treatments for Hodgkin's, and a > life- > > long history of unusual amounts of stress (starting with being > raised > > by generations of alcoholics) - I think it would be nieve to think > that > > I can reverse the immune damage with some homeopathic remedies, > > nutriceuticles and organic foods. But I do these things in hopes of > > pampering my immune system. > > > > I wasn't reaching out fishing for natural remedies. I was curious > to > > see if others had similar personal health histories. I love > the " poll " > > section. I was a sociology major. I have an active curiosity about > > researching what people have in common form the past once they > realize > > they have something common in the present. > > Tina > > > > > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Hi Patti,That's right. I was just thinking that besides health even our personalities are formed before we are very old. Been going through my old photos so I can share them with my Cousin Frances and found one of me, Grandma and my Cousins Heleen and Rita. I was about 3, Rita was 5 and Heleen [her sister] was about 7. Showed the pic to Steve and he mentioned how nothing much had changed. Rita was smiling for the camera, Heleen looked like she was annoyed, and I was preoccupied examining some detail in the pattern of Grandma's dress. Grandma just looked tired. Grandma's gone now, but we cousins are in our 60's and Heleen is still annoyed and Rita primps for the camera at every opportunity and I am still preoccupied with details. For what it's worth, I though that was kind of funny.Love, You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum! Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 rebecca, yeah, i know but if you think about it, i have met with a little over a 1,000 2nd year med students in grand rounds! not to shabby. i applied for another job today. really good one too. sure hope they call me for an interview. wish me luck. this one has benefits, no hourly contracting! yah!!! i should have something before too long. i am pretty good at what i do and have been doing it for 19 years (not bragging or anything...lol). i know a few people also. love, jeff, cd, pg > > Hi Jeff, > <<unfortunately, due to the job situation and at the time i was contracting on an hourly basis, i could not go to the derm grand rounds last month. first time i missed this in 5 years >> > > That really stinks! I know that every dr. and med student that meets you in Grand Rounds makes a difference in the way that future PG patients are treated. Amazing how so many things in life are interconnected. The economy leads to your job upheaval and that causes you to miss a Grand Rounds which years from now will affect a PG patient. Just an observation. > Love, > > > > > > > You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum! > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2008 Report Share Posted January 3, 2008 Hi Jeff, , and Group: Jeff, what good news on the potential new job. I will keep my fingers crossed that you land it. The good students at U of M will benefit from your presence during grand rounds. Can you come to Stanford :-) I hope that you all had a great holiday. As for me, I ended up in the back of an ambulance the day after Christmas. I was visiting with family and in the process of changing my bandages (still a two hour process), and I totally fainted. I woke up on the floor with my wounds exposed. My t-shirt was soaked, as a very afraid nephew and friend poured water on me to bring me back to the living. I had paramedics and firemen surrounding me asking who the President was, what holiday we had just celebrated, what day was it, and a whole lot of other questions. The terrible thing was that I had to give each answer a lot of thought :-) When I got to the emergency room, they were half way through my tests, and the room was suddenly cleared out. I was half on the gurney, my wounds were killing me, my gown was less than decent, and the IV was leaking everywhere. Well, the emergency was a man who had a heart attack, and they were trying to revive him right next to me. It was horrible. He did not make it, and I did my best to turn my head and give him space and dignity. The worst was when his wife came in to say goodbye. I was both crying and praying. A nurse came to console me, and I felt even worse. I decided at that moment that my PG did not matter much in the scheme of things, and I felt like an idiot for fainting. I have been trying to shake the experience, but it is difficult. I am having a tough time, as I am dealing with 4 more new wounds. The doctors at Stanford have been out for the holidays, so I have been battling with the all familiar pain and fears. The team was back yesterday, and I was relieved. The plan now is to get me back on Methatrexate and, of course, Folic Acid. I am up to 40 mgs. of Prednisone, which I am hating, and the Cellcept has been lowered to 1000 mgs. a day. I go in to Stanford tomorrow, Saturday, and Sunday for the IVIG infusions, which are administered over 8-10 hours each day. I pray that this regimine works. Yes, I am having more fun than anyone can imagine. Of course, I am kidding here. I really am in a funk since I was doing so well. This is a major set-back for me, and I feel as if hope is being lost. On the other hand, I think of that man and his family and find strength in that experience. I know it had to have happened for a reason. The new wounds are on my right ankle, my right frontal calf, right back calf, and my left hand. They are painful and ugly, but I guess they will compliment the other scars that I have. Perhaps I will find some artful shape in them, like the Mother found on toast. For now, I just have to keep pushing the doctors in terms of not messing around with my meds any longer and try my best to keep a positive attitude. I have to say, though, that the never ending strings of appointments, invasive tests, chronic pain, hours of bandaging, and everything else that has gone along with this horrid experience over the past 15 months has taken a very hard toll and has pushed me to limits that I never would have imagined. In fact, a shopping cart hit my car tonight, and I acted out of character by throwing my wallet across the car and hitting the window very hard not once but twice with the hand of which I have already lost half of my pinkie finger to PG. It goes without saying that now I have a swollen hand and bruised ego for losing it like that. Well, I guess that the pain is worse in my hand right now so it took the focus away from my legs and other hand. Thanks, as always, for reading my vent and for all of the love and support. I cannot possibly explain the fear, angst, and disgust to anyone who has not gone through this. Love, Elaine PG/RA > > > > Hi Jeff, > > <<unfortunately, due to the job situation and at the time i was > contracting on an hourly basis, i could not go to the derm grand > rounds last month. first time i missed this in 5 years >> > > > > That really stinks! I know that every dr. and med student that > meets you in Grand Rounds makes a difference in the way that future > PG patients are treated. Amazing how so many things in life are > interconnected. The economy leads to your job upheaval and that > causes you to miss a Grand Rounds which years from now will affect a > PG patient. Just an observation. > > Love, > > > > > > > > > > > > > > You can help Erythema Nodosum Research. Just go to > www.goodsearch.com and under the I'm Supporting section enter > Erythema Nodosum Research Fund. Every time you use Goodsearch to > search, a penny will be donated to EN Research. So sign up today, > and be sure to tell your friends, family and co-workers. Let's find a > cure for Erythema Nodosum! > > > > > > > > > > > > --------------------------------- > > Looking for last minute shopping deals? Find them fast with Yahoo! > Search. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Good Morning Miss ,=0) *lol* I liked the story! Regarding personalities being formed...ahhh geeez, I'd bet there was the lay- out for the idenity and from there we put our personal designs to it.*lol* thus...creating our personalities...ahhhh...say by the age of 3? By 5 we had it down. Geeez , it's overwhelming to think about how much mental work we did. But then, as we have discussed, could be a % of why we develope those red,raised bumps we get. Thanks for sharing the story, I enjoy your humor. (* > > Hi Patti, > That's right. > I was just thinking that besides health even our personalities are formed before we are very old. Been going through my old photos so I can share them with my Cousin Frances and found one of me, Grandma and my Cousins Heleen and Rita. I was about 3, Rita was 5 and Heleen [her sister] was about 7. > Showed the pic to Steve and he mentioned how nothing much had changed. Rita was smiling for the camera, Heleen looked like she was annoyed, and I was preoccupied examining some detail in the pattern of Grandma's dress. Grandma just looked tired. Grandma's gone now, but we cousins are in our 60's and Heleen is still annoyed and Rita primps for the camera at every opportunity and I am still preoccupied with details. For what it's worth, I though that was kind of funny. > Love, > > > > > > > You can help Erythema Nodosum Research. Just go to www.goodsearch.com and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum! > > > > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Hi Elaine, I's so sorry to hear about your setback. My prayers are with you! Vicki --- pali310 wrote: > Hi Jeff, , and Group: > Jeff, what good news on the potential new job. I > will keep my > fingers crossed that you land it. The good students > at U of M will > benefit from your presence during grand rounds. Can > you come to > Stanford :-) > I hope that you all had a great holiday. As for me, > I ended up in > the back of an ambulance the day after Christmas. I > was visiting > with family and in the process of changing my > bandages (still a two > hour process), and I totally fainted. I woke up on > the floor with my > wounds exposed. My t-shirt was soaked, as a very > afraid nephew and > friend poured water on me to bring me back to the > living. > I had paramedics and firemen surrounding me asking > who the President > was, what holiday we had just celebrated, what day > was it, and a > whole lot of other questions. The terrible thing > was that I had to > give each answer a lot of thought :-) > When I got to the emergency room, they were half way > through my > tests, and the room was suddenly cleared out. I was > half on the > gurney, my wounds were killing me, my gown was less > than decent, and > the IV was leaking everywhere. Well, the emergency > was a man who had > a heart attack, and they were trying to revive him > right next to me. > It was horrible. He did not make it, and I did my > best to turn my > head and give him space and dignity. The worst was > when his wife > came in to say goodbye. I was both crying and > praying. A nurse came > to console me, and I felt even worse. I decided at > that moment that > my PG did not matter much in the scheme of things, > and I felt like an > idiot for fainting. > I have been trying to shake the experience, but it > is difficult. I > am having a tough time, as I am dealing with 4 more > new wounds. The > doctors at Stanford have been out for the holidays, > so I have been > battling with the all familiar pain and fears. The > team was back > yesterday, and I was relieved. The plan now is to > get me back on > Methatrexate and, of course, Folic Acid. I am up to > 40 mgs. of > Prednisone, which I am hating, and the Cellcept has > been lowered to > 1000 mgs. a day. I go in to Stanford tomorrow, > Saturday, and Sunday > for the IVIG infusions, which are administered over > 8-10 hours each > day. I pray that this regimine works. > Yes, I am having more fun than anyone can imagine. > Of course, I am > kidding here. I really am in a funk since I was > doing so well. This > is a major set-back for me, and I feel as if hope is > being lost. On > the other hand, I think of that man and his family > and find strength > in that experience. I know it had to have happened > for a reason. > The new wounds are on my right ankle, my right > frontal calf, right > back calf, and my left hand. They are painful and > ugly, but I guess > they will compliment the other scars that I have. > Perhaps I will > find some artful shape in them, like the Mother > found on toast. > For now, I just have to keep pushing the doctors in > terms of not > messing around with my meds any longer and try my > best to keep a > positive attitude. I have to say, though, that the > never ending > strings of appointments, invasive tests, chronic > pain, hours of > bandaging, and everything else that has gone along > with this horrid > experience over the past 15 months has taken a very > hard toll and has > pushed me to limits that I never would have > imagined. In fact, a > shopping cart hit my car tonight, and I acted out of > character by > throwing my wallet across the car and hitting the > window very hard > not once but twice with the hand of which I have > already lost half of > my pinkie finger to PG. It goes without saying that > now I have a > swollen hand and bruised ego for losing it like > that. Well, I guess > that the pain is worse in my hand right now so it > took the focus away > from my legs and other hand. > Thanks, as always, for reading my vent and for all > of the love and > support. I cannot possibly explain the fear, angst, > and disgust to > anyone who has not gone through this. > Love, > Elaine > PG/RA > > > > > > > Hi Jeff, > > > <<unfortunately, due to the job situation and at > the time i was > > contracting on an hourly basis, i could not go to > the derm grand > > rounds last month. first time i missed this in 5 > years >> > > > > > > That really stinks! I know that every dr. and > med student that > > meets you in Grand Rounds makes a difference in > the way that future > > PG patients are treated. Amazing how so many > things in life are > > interconnected. The economy leads to your job > upheaval and that > > causes you to miss a Grand Rounds which years from > now will affect > a > > PG patient. Just an observation. > > > Love, > > > > > > > > > > > > > > > > > > > > > You can help Erythema Nodosum > Research. Just go to > > www.goodsearch.com and under the I'm Supporting > section enter > > Erythema Nodosum Research Fund. Every time you > use Goodsearch > to > > search, a penny will be donated to EN Research. > So sign up today, > > and be sure to tell your friends, family and > co-workers. Let's find > a > > cure for Erythema Nodosum! > > > > > > > > > > > > > > > > > > --------------------------------- > > > Looking for last minute shopping deals? Find > them fast with > === message truncated === ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 elaine, i read this and i got tears in my eyes. i may be a mush but i want to offer you strength. as much as it hurts i want you to push on....which you are doing........good girl!!! i would be happy to come to standford.......nutt'in much else to do here your standford boys need to dig deep and reformulate. this is one of those processes that is not " off the shelf " . i know i am not telling you anything new here. as you know, in my case, we backed up and started over many times. resistent cases are like that. and, unfortunately, one must suffer in the mean time. you feel like one big fat experiment! i trust your standford boys have been down that road so they know how to do this. do you think they are of the nature to " think outside the box " ? i think that is what it is going to take here. i may have mentioned this before, ask them about tacrolimus...aka fk506. this was the only thing that brought my pg under control. this was suggested from a world reknown derm expert in pg in chicago at northwestern. don't know his name, but one of your standford derms should! fk506 is used a lot in organ transplants, therefore it is an immunomodulator. but, no doc will find this med as a 1st or even 2nd line defense for pg. kinda risky stuff, but if your kindneys are in reasonably good shape, should not be an issue. they would be doing all kinds of tests to be sure all your functions don't suffer. have you asked them about fk506 yet? will you? take care, jeff, pg, cd > > Hi Jeff, , and Group: > Jeff, what good news on the potential new job. I will keep my > fingers crossed that you land it. The good students at U of M will > benefit from your presence during grand rounds. Can you come to > Stanford :-) > I hope that you all had a great holiday. As for me, I ended up in > the back of an ambulance the day after Christmas. I was visiting > with family and in the process of changing my bandages (still a two > hour process), and I totally fainted. I woke up on the floor with my > wounds exposed. My t-shirt was soaked, as a very afraid nephew and > friend poured water on me to bring me back to the living. > I had paramedics and firemen surrounding me asking who the President > was, what holiday we had just celebrated, what day was it, and a > whole lot of other questions. The terrible thing was that I had to > give each answer a lot of thought :-) > When I got to the emergency room, they were half way through my > tests, and the room was suddenly cleared out. I was half on the > gurney, my wounds were killing me, my gown was less than decent, and > the IV was leaking everywhere. Well, the emergency was a man who had > a heart attack, and they were trying to revive him right next to me. > It was horrible. He did not make it, and I did my best to turn my > head and give him space and dignity. The worst was when his wife > came in to say goodbye. I was both crying and praying. A nurse came > to console me, and I felt even worse. I decided at that moment that > my PG did not matter much in the scheme of things, and I felt like an > idiot for fainting. > I have been trying to shake the experience, but it is difficult. I > am having a tough time, as I am dealing with 4 more new wounds. The > doctors at Stanford have been out for the holidays, so I have been > battling with the all familiar pain and fears. The team was back > yesterday, and I was relieved. The plan now is to get me back on > Methatrexate and, of course, Folic Acid. I am up to 40 mgs. of > Prednisone, which I am hating, and the Cellcept has been lowered to > 1000 mgs. a day. I go in to Stanford tomorrow, Saturday, and Sunday > for the IVIG infusions, which are administered over 8-10 hours each > day. I pray that this regimine works. > Yes, I am having more fun than anyone can imagine. Of course, I am > kidding here. I really am in a funk since I was doing so well. This > is a major set-back for me, and I feel as if hope is being lost. On > the other hand, I think of that man and his family and find strength > in that experience. I know it had to have happened for a reason. > The new wounds are on my right ankle, my right frontal calf, right > back calf, and my left hand. They are painful and ugly, but I guess > they will compliment the other scars that I have. Perhaps I will > find some artful shape in them, like the Mother found on toast. > For now, I just have to keep pushing the doctors in terms of not > messing around with my meds any longer and try my best to keep a > positive attitude. I have to say, though, that the never ending > strings of appointments, invasive tests, chronic pain, hours of > bandaging, and everything else that has gone along with this horrid > experience over the past 15 months has taken a very hard toll and has > pushed me to limits that I never would have imagined. In fact, a > shopping cart hit my car tonight, and I acted out of character by > throwing my wallet across the car and hitting the window very hard > not once but twice with the hand of which I have already lost half of > my pinkie finger to PG. It goes without saying that now I have a > swollen hand and bruised ego for losing it like that. Well, I guess > that the pain is worse in my hand right now so it took the focus away > from my legs and other hand. > Thanks, as always, for reading my vent and for all of the love and > support. I cannot possibly explain the fear, angst, and disgust to > anyone who has not gone through this. > Love, > Elaine > PG/RA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Dear Elaine,No words can express how sorry I am to learn of the Hell you have recently been through. I too feel that everything happens for a reason and that "if God brings you to it, He'll get you through it". But honestly, I can't see why good people suffer so. I don't know if you keep a journal or diary, but everything you ever wrote [and your writing is excellent in spite of the very serious nature of the subject matter] is archived on our group site. It will make it easier when you, or someone writes the book [or better yet], the screenplay. One thing is certain and that is that whomever reads your posts chronicalling your PG experience is appreciative that their own health issues is milder by comparison. If there is anything I can do to ease your burden let me know. And always remember that your network of friends includes our EN Group members, both those who take the time to support you with their prayers, good thoughts, and emails, and those who are too shaken to by your experience to write.My thoughts are with you as you go through the infusion. I'll be praying that you respond quickly and see visible improvement as well as lessening of pain. Your courage and good humor inspire me.Love,idio. EN '68 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Hi Jeff, The funny thing is that my pcp immediately sent me to the grand rounds at teaching hospital near me (U of Penn). I saw it listed in the websites resourses. I went through derm grand rounds there and nobody recognized the PG even though my massage therapist had guessed it from medical dictionary pictures because it was so classic, and was there with me asking them to consider PG as a possibility. They and the derm docs at my local hospital all missed the PG diagnosis. I will never understand. But as i got more and more desperate after more outbreaks and greater disability, I called in a favor from a doc I had gardened for, and he called in a favor from another retired specialist her respected to be the best diagnostician (sp?). So, after being ordered by derm docs and then laying in my record for about a year, this retired doc looked at my old biospy (before ordering a special three inch cone biopsy) and spoke with the pathologist. The info anyone needed was in that biopsy to confirm the PG diagnosis. So, I don't get it. I lost my respect for dermatologists since so many different ones missed the point even with a good biopsy to go on. But now that I have been to every other kind of specialist, I guess that it is back to placing my fate in their hands again. I am being referred back to Penn derm as we speak, but, since I have no insurance, I don't know whether they will take me. If yes, I sure hope that they will call in a hemotologist to work with them. When I look at the "underlying causes", I keep seeing red flags in the lymphoma and leukemia stuff since I had Hodgkins and I have weird lymph gland stuff going on now. It is a great comfort to glean from this EN support site that PG and EN are sooooooooooo difficult to figure. It is very humbling for doctor and patient alike when every person on the remission-for-a-year list got there in different ways. Anyway, I'm so pleased that my most recent wounds seem to be almost healed. I'll give a full report asap, but am too tired tonight. TinaJeff wrote: tina,i realize it went beyond health food diet, but yeah, i truely don't believe that or lack of it, or anything we personally do makes this appear, therefore i don't believe any of that will make it go away.i was wondering about your episodes with doctors. i was getting the same thing. don't know if you can manage this, but i went to a medical school, in my case university of michigan medical center. looking back, i can see this was the ONLY WAY i was going to get help with a very stubburn pg case. even my local docs i see now realize (because we have had conversations about this)they will need to send me back there if my case gets difficult. too bad the other set of docs i had in the beginning didn't realize that. they mis-dx'ed me and consequently was treated with the wrong meds that, in some cases, exuberated my symtoms, especially my crohns. i think sometimes ourselves and our docs don't know when to say we have met our limit and we need to go to the experts. you are absolutely correct, it is easier for them to pass you along to someone else and now you become their headache. since being involved with u of m's grand rounds, i don't believe in their medical training are they taught to identify patients that truely need to go to a medical teaching center. if i get back there this year, i will have that conversation with my lead derm doc there. unfortunately, due to the job situation and at the time i was contracting on an hourly basis, i could not go to the derm grand rounds last month. first time i missed this in 5 years :(love,jeffpg,cd>> Hi Jeff,> Not trying to indicate any feelings or beliefs of "beyond repair". Just trying to tweek my previous message which seemed to get you thinking that i was nieve enough to think a health food diet was going to cure me right away. You seemed to relly take issue with that.> > Oh how this message from you underlines my fervent wish for a doctor who would address my immune system, especially a common sense overview about what could have upset it so, and what could calm and heal it!!!!!!!!!!!! I certainly don't have any expertiese and am left to wonder in the info void. In my message, you read me wondering.> > Every specialist sends me to a different type of specialist, around in circles for years, feeling like a hot potato. And NOT A SINGLE ONE has ever talked to me about my immune system, though they all finally agree that I have PG, which is an autoimmune disorder. > After all of the specialistists I have seen, I still don't even know what branch of medicine best deals with the immune system. They all look at me like deer in the headlights. The specialists send me back to internal medicine and IM sends me back to specialists. And the specialists send me to different specialists and then I get sent back to the internal medicine people again. this went on for three years before I got a diagnosis, and I only got pain medicine prescribed for the first time in Nov. (and now all the doctors are playing hot potato again about who should order refills). And some can't guess why I think I might need disability now that I am admitting that it isn't going to just go away like a scraped knee or a bad case of poison ivy; now that I know it can get severe enough to put me in a wheelchair for a few months and prevent me from being able to sleep or function in basic self care. Now that I realize how much work time I have been missing.> > Reading the emails in this self help group is the first validation I have received about how painful this condition can get in it's most inflamatory stages; what an incredible amount of time it takes just to bathe and change dressings........................> > I have been a Pollyanna all my life. I have always known how to put a happy face on anything and everything. This PG is a challenge to my uplifting imagination. With the lack of a fatherly or motherly medical figure to come along and fix my booboos, denial seemed like a good policy. Surrendering to the severity of this condition is quite a sobering task since I have been reading these EN site messages for the past few days.> Tina Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2008 Report Share Posted January 6, 2008 ~*~ Elaine,I hope that you are doing, even a bit, better. OMG!!! As well as others here, I really do "feel" your pain. A few years back, 2005, I had a year of dressing changes (twice, sometimes three times a day).I can't remember which legs now but I do remember the numbers...one leg I had 19 lesions, the other 17. After awhile some merged together making one huge lesion. Being I had no insurnace, it was left up to me to manage the task of changing the dressings. Before that episode I had had a lesion(just one)on my left lower leg. Becuz I had state medical asst. I was admitted to the hospital, put on the wound care unit and given the best care known to man. I was confused about that, of course. Who knows...politics, I suppose. Anyway...I just wanted to say "Hello" and let you know I am putting you in my thoughts and prayers. The pain is beyond explanation. As you probably have discovered, I never knew I was that strong or had that level of endurance. Strength and love sent your way. Patti(* > > >> > > Hi Jeff,> > > <<unfortunately, due to the job situation and at the time i was > > contracting on an hourly basis, i could not go to the derm grand > > rounds last month. first time i missed this in 5 years >>> > > > > > That really stinks! I know that every dr. and med student that > > meets you in Grand Rounds makes a difference in the way that future > > PG patients are treated. Amazing how so many things in life are > > interconnected. The economy leads to your job upheaval and that > > causes you to miss a Grand Rounds which years from now will affect > a > > PG patient. Just an observation.> > > Love,> > > > > > > > > > > > > > > > > > > > > You can help Erythema Nodosum Research. Just go to > > www.goodsearch.com and under the I'm Supporting section enter > > Erythema Nodosum Research Fund. Every time you use Goodsearch > to > > search, a penny will be donated to EN Research. So sign up today, > > and be sure to tell your friends, family and co-workers. Let's find > a > > cure for Erythema Nodosum!> > > > > > > > > > > > > > > > > > ---------------------------------> > > Looking for last minute shopping deals? Find them fast with > Yahoo! > > Search.> > >> >> Quote Link to comment Share on other sites More sharing options...
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