Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 my name is jaime, i live in houston texas and am 29 years old. i was diagnosed with the auto immune disease eosinophilic granuloma and PF in october of 2005. i have a daughter 9 and a son 5. i was started out on 60mg per day of prednisone in november...i am down to 30 mg a day...50 pounds later. i am also on the actimmune injections along with prevacid for the bleeding stomach lining caused from such high doses of the prednisone. i have been giving lasix for water retention, calcium supplements, 2 vitamins a day instead of 1 and 2000 mg a day of vitamin C plus zoloft for depression. of course i was depressed, i'm 29 years old and the dr's are telling me i am going to die regardless of what they do, all they can do is try to stabalize me....well golly gee thanks ! my kids know that mommy has sick lungs but they do not know it is slowly going to kill me. that is something i didn't think they should have to deal with everyday of their lives....they are only children after all. well this is my story and i am glad to be here with all of you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 , Welcome to our group. I am so sorry that you are so sick, but so very happy that you chose to write. I hope that you will stay around and let us give you some support and cheer you up now and then. We all need each other! You are so young to be so sick. How are you coping with the children? Do they understand how serious this is. When I got so very sick, my grandchildren had a rough time of it. They are just used to me dragging my oxygen around and coughing, now. I had never heard of this disease, eosinophilic granuloma , but just did some reading. Are only your lungs affected? Are autoimmune diseases frequent in your family? Honey, if they can get you stabilized it would be wonderful. That is a good thing. I know that all you can see now is the misery, but maybe soon you will be able to look at every day as a gift from God. Another day to see those sweet little faces. Don't worry about the weight right now. It is just fat. Fluffy. As you wean down from the prednisone you can work on losing that. Our Ginger is from Texas. You will see her posts. She is wonderful! Stay around and let us help.....and you can help us. Tell us more about how you first became ill. I am really curious about this disease. I will remember you in my prayers tonight. Stay strong! I hear you Texas women are tough! Hugs, Joyce PF 1997 >> my name is jaime, i live in houston texas and am 29 years old. i was > diagnosed with the auto immune disease eosinophilic granuloma and PF > in october of 2005. i have a daughter 9 and a son 5.> > i was started out on 60mg per day of prednisone in november...i am > down to 30 mg a day...50 pounds later. i am also on the actimmune > injections along with prevacid for the bleeding stomach lining > caused from such high doses of the prednisone. i have been giving > lasix for water retention, calcium supplements, 2 vitamins a day > instead of 1 and 2000 mg a day of vitamin C plus zoloft for > depression.> > of course i was depressed, i'm 29 years old and the dr's are telling > me i am going to die regardless of what they do, all they can do is > try to stabalize me....well golly gee thanks !> > my kids know that mommy has sick lungs but they do not know it is > slowly going to kill me. that is something i didn't think they > should have to deal with everyday of their lives....they are only > children after all.> > well this is my story and i am glad to be here with all of you.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 as i stated before, no my children are not aware how serious this is. i feel they are too young and have to much on their minds already to have knowing that their mommy is slowly dying added to that. they are very active children. they both play little league and my daughter is in honor choir and the art club. she is dyslexic and my son has a speech impediment known as severe tongue thrust. they deal with enough in their everyday lives without having this in the back of their minds all of the time as well. i feel i owe them that. only my lungs are effected at this time and no, no one in my family has ever dealt with auto immune or lung diseases. most of the family members we have lost have been due to heart failure and cancer. so far this lil ticker is still in great shape. i'm not at all concerned with the weight i gained because i have always been way under weight with an extremely high metabolism so i really needed the weight. it's the moon face and double chin i hate waking up to every morning. i am very thankful for everyday that i wake up....i'm one more day closer to tormenting these kids into moving out someday. lol that's my goal in life right now. HAHAHAHA! i have posted a few pics under the photo section here..you can see the difference in the before and after prednisone...gotta love it! thanks for being so welcoming and open with me. and yes we texas women are very strong....especially those of us who are imported to texas from Louisiana where you have to be so mean that just like bad weeds....not even diesel can kill ya! lol i had the oppurtunity to speak with ginger on yahoo messenger last night...extremely lovely person. > > > > my name is jaime, i live in houston texas and am 29 years old. i was > > diagnosed with the auto immune disease eosinophilic granuloma and PF > > in october of 2005. i have a daughter 9 and a son 5. > > > > i was started out on 60mg per day of prednisone in november...i am > > down to 30 mg a day...50 pounds later. i am also on the actimmune > > injections along with prevacid for the bleeding stomach lining > > caused from such high doses of the prednisone. i have been giving > > lasix for water retention, calcium supplements, 2 vitamins a day > > instead of 1 and 2000 mg a day of vitamin C plus zoloft for > > depression. > > > > of course i was depressed, i'm 29 years old and the dr's are telling > > me i am going to die regardless of what they do, all they can do is > > try to stabalize me....well golly gee thanks ! > > > > my kids know that mommy has sick lungs but they do not know it is > > slowly going to kill me. that is something i didn't think they > > should have to deal with everyday of their lives....they are only > > children after all. > > > > well this is my story and i am glad to be here with all of you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Hi , Imglad that I can write to you for telling you this would be very tearful for me ,this past week when I traveld to colorado to pick up my daughter from college, one of my best friends and my mom came along .they had some time alone together which my best friend had shared with my mom how amazed she was by my drive to be strong for my family she said that I was her hero................I know I dont know you or you me I am 47 wiht 19yr girl and 21yr boy jaime when I read your post the word that came from my heart .....Hero....you are my Hero in these words I share my breath... psssssst I promise I wont eat onions! dorisjaime wrote: as i stated before, no my children are not aware how serious this is. i feel they are too young and have to much on their minds already to have knowing that their mommy is slowly dying added to that. they are very active children. they both play little league and my daughter is in honor choir and the art club. she is dyslexic and my son has a speech impediment known as severe tongue thrust. they deal with enough in their everyday lives without having this in the back of their minds all of the time as well. i feel i owe them that.only my lungs are effected at this time and no, no one in my family has ever dealt with auto immune or lung diseases. most of the family members we have lost have been due to heart failure and cancer. so far this lil ticker is still in great shape. :)i'm not at all concerned with the weight i gained because i have always been way under weight with an extremely high metabolism so i really needed the weight. it's the moon face and double chin i hate waking up to every morning.i am very thankful for everyday that i wake up....i'm one more day closer to tormenting these kids into moving out someday. lol that's my goal in life right now. HAHAHAHA!i have posted a few pics under the photo section here..you can see the difference in the before and after prednisone...gotta love it!thanks for being so welcoming and open with me.and yes we texas women are very strong....especially those of us who are imported to texas from Louisiana where you have to be so mean that just like bad weeds....not even diesel can kill ya! lol i had the oppurtunity to speak with ginger on yahoo messenger last night...extremely lovely person.> >> > my name is jaime, i live in houston texas and am 29 years old. i was> > diagnosed with the auto immune disease eosinophilic granuloma and PF> > in october of 2005. i have a daughter 9 and a son 5.> >> > i was started out on 60mg per day of prednisone in november...i am> > down to 30 mg a day...50 pounds later. i am also on the actimmune> > injections along with prevacid for the bleeding stomach lining> > caused from such high doses of the prednisone. i have been giving> > lasix for water retention, calcium supplements, 2 vitamins a day> > instead of 1 and 2000 mg a day of vitamin C plus zoloft for> > depression.> >> > of course i was depressed, i'm 29 years old and the dr's are telling> > me i am going to die regardless of what they do, all they can do is> > try to stabalize me....well golly gee thanks !> >> > my kids know that mommy has sick lungs but they do not know it is> > slowly going to kill me. that is something i didn't think they> > should have to deal with everyday of their lives....they are only> > children after all.> >> > well this is my story and i am glad to be here with all of you.> >> Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. Quote Link to comment Share on other sites More sharing options...
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