Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 What is ESLD in real terms? It's spending Christmas with family and looking at photos and not knowing who is in the photo because you can't remember who the people are when all of your life you've had a near photographic memory. It's trying to write something and having to use 2 hands because they both shake. It's going to bed at 10PM after taking 2 sleeping pills, 2 tranquilizers and an anti-psychotic drug and then being wide awake at 1 AM. So you take 2 more sleeping pills and that gets you until 4 AM before you're wide awake again. So maybe 2 more tranquilizers and toss and turn for an hour until you finally fall asleep only to wake up at 7 AM. Then it's anti-fatigue pills to try and make it through the day. It's having a long day without a nap and sleeping for 30, 40, sometimes 50 hours straight after and missing beautiful days that you know are limited. It's having to search for the giant size pill separator box because even the 2 you used at once won't hold them anymore. It's pain. A lot of pain. It doesn't go away, it's always there. No one will give you a prescription for morphine that is the only thing that takes it all away. It's frustration. Frustration with your own inabilities. Frustration with the medical field. Frustration with your family that just doesn't "get it". It's not wanting to tell your Mother how it really is because you'll know she'll cry. It's loneliness. Not outward. The loneliness of your thoughts when you turn the light out at night and think about tomorrow. There is no anger, it's way past that. Very little humor. It's about living on disability and at the end of the day you get paid, after paying all your bills, and going through your budget, you have $70.48 for the rest of the month and recalling a time $70.48 was a lunch tab. It's problems peeing, eating, walking, sitting, reading, speaking, remembering, having sex, shopping, showering, dressing, concentrating, comprehending, standing and seeing. It's a complex ballet of drug reactions, ever changing physical abnormalities, constantly changing emotions and mental paradoxes. It's about making "lists". The kind that dying people make. Lists of things you want to do, places you want to go, people you want to see when all the while you know in your heart you know you probably won't have the energy or resources to do them. It's not about "hope". It's not about "wish". It's not about "dreams". It's about reality. It is only too real. Allan with 2 L's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 So very well put Allan. dAllan W Anger Jr <allananger@...> wrote: What is ESLD in real terms? It's spending Christmas with family and looking at photos and not knowing who is in the photo because you can't remember who the people are when all of your life you've had a near photographic memory. It's trying to write something and having to use 2 hands because they both shake. It's going to bed at 10PM after taking 2 sleeping pills, 2 tranquilizers and an anti-psychotic drug and then being wide awake at 1 AM. So you take 2 more sleeping pills and that gets you until 4 AM before you're wide awake again. So maybe 2 more tranquilizers and toss and turn for an hour until you finally fall asleep only to wake up at 7 AM. Then it's anti-fatigue pills to try and make it through the day. It's having a long day without a nap and sleeping for 30, 40, sometimes 50 hours straight after and missing beautiful days that you know are limited. It's having to search for the giant size pill separator box because even the 2 you used at once won't hold them anymore. It's pain. A lot of pain. It doesn't go away, it's always there. No one will give you a prescription for morphine that is the only thing that takes it all away. It's frustration. Frustration with your own inabilities. Frustration with the medical field. Frustration with your family that just doesn't "get it". It's not wanting to tell your Mother how it really is because you'll know she'll cry. It's loneliness. Not outward. The loneliness of your thoughts when you turn the light out at night and think about tomorrow. There is no anger, it's way past that. Very little humor. It's about living on disability and at the end of the day you get paid, after paying all your bills, and going through your budget, you have $70.48 for the rest of the month and recalling a time $70.48 was a lunch tab. It's problems peeing, eating, walking, sitting, reading, speaking, remembering, having sex, shopping, showering, dressing, concentrating, comprehending, standing and seeing. It's a complex ballet of drug reactions, ever changing physical abnormalities, constantly changing emotions and mental paradoxes. It's about making "lists". The kind that dying people make. Lists of things you want to do, places you want to go, people you want to see when all the while you know in your heart you know you probably won't have the energy or resources to do them. It's not about "hope". It's not about "wish". It's not about "dreams". It's about reality. It is only too real. Allan with 2 L's DSL Something to write home about. Just $16.99/mo. or less Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Reality Sucks...Hang In there Allan.....Hugs, Pat ESLD in Real Terms What is ESLD in real terms? It's spending Christmas with family and looking at photos and not knowing who is in the photo because you can't remember who the people are when all of your life you've had a near photographic memory. It's trying to write something and having to use 2 hands because they both shake. It's going to bed at 10PM after taking 2 sleeping pills, 2 tranquilizers and an anti-psychotic drug and then being wide awake at 1 AM. So you take 2 more sleeping pills and that gets you until 4 AM before you're wide awake again. So maybe 2 more tranquilizers and toss and turn for an hour until you finally fall asleep only to wake up at 7 AM. Then it's anti-fatigue pills to try and make it through the day. It's having a long day without a nap and sleeping for 30, 40, sometimes 50 hours straight after and missing beautiful days that you know are limited. It's having to search for the giant size pill separator box because even the 2 you used at once won't hold them anymore. It's pain. A lot of pain. It doesn't go away, it's always there. No one will give you a prescription for morphine that is the only thing that takes it all away. It's frustration. Frustration with your own inabilities. Frustration with the medical field. Frustration with your family that just doesn't "get it". It's not wanting to tell your Mother how it really is because you'll know she'll cry. It's loneliness. Not outward. The loneliness of your thoughts when you turn the light out at night and think about tomorrow. There is no anger, it's way past that. Very little humor. It's about living on disability and at the end of the day you get paid, after paying all your bills, and going through your budget, you have $70.48 for the rest of the month and recalling a time $70.48 was a lunch tab. It's problems peeing, eating, walking, sitting, reading, speaking, remembering, having sex, shopping, showering, dressing, concentrating, comprehending, standing and seeing. It's a complex ballet of drug reactions, ever changing physical abnormalities, constantly changing emotions and mental paradoxes. It's about making "lists". The kind that dying people make. Lists of things you want to do, places you want to go, people you want to see when all the while you know in your heart you know you probably won't have the energy or resources to do them. It's not about "hope". It's not about "wish". It's not about "dreams". It's about reality. It is only too real. Allan with 2 L's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Allan, My Friend Thank You Very Much. Thank You for having the courage to open up, dig deep down inside yourself and to your emotions put it all so eloquently to writing and share it with all of us. I have found that men have a harder time doing this than woman. You have helped many other people and I Pray yourself also in the process. Buddy you feel better about it all and you ?????? I keep journals when I was in ESLD pouring out to myself in writing my emotions and frustrations. On good or better days I would reread them and know that I definitely was having a better day and was thankful. It did help me a great deal. This is a good way of coping, facing and accepting our futures and understanding all of it and ourselves better and the added bonus in group by also helping and supporting our HCV Brother's and Sister's. Successful support goes both ways - Giving and Receiving. Keep On Posting !!!!!!!!!!!!! Big Guy - Love Ya. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Buddy you feel better about it all and you ?????? Nope, not a bit. It is what it is. Allan with 2 L's Re: ESLD in Real Terms Allan, My Friend Thank You Very Much. Thank You for having the courage to open up, dig deep down inside yourself and to your emotions put it all so eloquently to writing and share it with all of us. I have found that men have a harder time doing this than woman. You have helped many other people and I Pray yourself also in the process. Buddy you feel better about it all and you ?????? I keep journals when I was in ESLD pouring out to myself in writing my emotions and frustrations. On good or better days I would reread them and know that I definitely was having a better day and was thankful. It did help me a great deal. This is a good way of coping, facing and accepting our futures and understanding all of it and ourselves better and the added bonus in group by also helping and supporting our HCV Brother's and Sister's. Successful support goes both ways - Giving and Receiving. Keep On Posting !!!!!!!!!!!!! Big Guy - Love Ya. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Buddy you feel better about it all and you ?????? Nope, not a bit. Well damn you know it's not a one time shot fix. Hope it does help. Love and Hugs. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Deb thanks for the kind words. I don't find it hard opening up. So much so I have more than once caused quite a stir in "live" support groups. Once the topic of life insurance came up and I put in that I had a 1 million dollar "key man" policy (term insurance) on me that carried an $11,000 annual premium. People gasped. My reply was, "Hey, face it, we don't have good actuarials". I thought I was going to get lynched! Now I have a $10,000 burial policy payable to my Mother. I told her to buy a gallon of gas and a book of matches and go on a cruise! I'm a realist and always have been. I tend to be on the cold and clinical side. I must admit though it does get tiring at times when it slaps you in the face every day. Allan with 2 L's now I'm going out to party. Re: ESLD in Real Terms Allan, My Friend Thank You Very Much. Thank You for having the courage to open up, dig deep down inside yourself and to your emotions put it all so eloquently to writing and share it with all of us. I have found that men have a harder time doing this than woman. You have helped many other people and I Pray yourself also in the process. Buddy you feel better about it all and you ?????? I keep journals when I was in ESLD pouring out to myself in writing my emotions and frustrations. On good or better days I would reread them and know that I definitely was having a better day and was thankful. It did help me a great deal. This is a good way of coping, facing and accepting our futures and understanding all of it and ourselves better and the added bonus in group by also helping and supporting our HCV Brother's and Sister's. Successful support goes both ways - Giving and Receiving. Keep On Posting !!!!!!!!!!!!! Big Guy - Love Ya. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 Smart man..I got one for $65,000.00 myself..Personaly the husband and myself thought it would be a good idea..Eh! Why not.. BooAllan W Anger Jr <allananger@...> wrote: Deb thanks for the kind words. I don't find it hard opening up. So much so I have more than once caused quite a stir in "live" support groups. Once the topic of life insurance came up and I put in that I had a 1 million dollar "key man" policy (term insurance) on me that carried an $11,000 annual premium. People gasped. My reply was, "Hey, face it, we don't have good actuarials". I thought I was going to get lynched! Now I have a $10,000 burial policy payable to my Mother. I told her to buy a gallon of gas and a book of matches and go on a cruise! I'm a realist and always have been. I tend to be on the cold and clinical side. I must admit though it does get tiring at times when it slaps you in the face every day. Allan with 2 L's now I'm going out to party. Kathy Brunow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 $65K for a burial policy??? Damn.....call me for THAT wake LOL. I have a burial plot reserved for me in a little town in upstate NY but I think (at this time) I would rather be cremated and have my ashes scattered in the infield at Indianapolis. It was always my dream to drive in the Indy 500 until I had to accept the cold hard fact that I am physically too large for the cars. Allan with 2 L's Re: Re: ESLD in Real Terms Smart man..I got one for $65,000.00 myself..Personaly the husband and myself thought it would be a good idea..Eh! Why not.. BooAllan W Anger Jr <allananger@...> wrote: Deb thanks for the kind words. I don't find it hard opening up. So much so I have more than once caused quite a stir in "live" support groups. Once the topic of life insurance came up and I put in that I had a 1 million dollar "key man" policy (term insurance) on me that carried an $11,000 annual premium. People gasped. My reply was, "Hey, face it, we don't have good actuarials". I thought I was going to get lynched! Now I have a $10,000 burial policy payable to my Mother. I told her to buy a gallon of gas and a book of matches and go on a cruise! I'm a realist and always have been. I tend to be on the cold and clinical side. I must admit though it does get tiring at times when it slaps you in the face every day. Allan with 2 L's now I'm going out to party. Kathy Brunow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2006 Report Share Posted January 3, 2006 You expressed yourself so clearly and elequently, and in real terms.I read Debs reply to you before I saw what you wrote and she makes sense also.keeping a diary and being able to express yourself freely.Your expressing your thoughts but no one in your family can see them.What Deb does makes sense.My brother has a chemical imbalance in his brain,sort of a manic depressent and he always kept a journal that he could look back and see where his head was at that moment in time..Thank you for sharing with us and doing it so well. Gail -----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of Allan W Anger JrSent: January 3, 2006 5:35 PMHepatitis CSupportGroupForDummies Subject: ESLD in Real Terms What is ESLD in real terms? It's spending Christmas with family and looking at photos and not knowing who is in the photo because you can't remember who the people are when all of your life you've had a near photographic memory. It's trying to write something and having to use 2 hands because they both shake. It's going to bed at 10PM after taking 2 sleeping pills, 2 tranquilizers and an anti-psychotic drug and then being wide awake at 1 AM. So you take 2 more sleeping pills and that gets you until 4 AM before you're wide awake again. So maybe 2 more tranquilizers and toss and turn for an hour until you finally fall asleep only to wake up at 7 AM. Then it's anti-fatigue pills to try and make it through the day. It's having a long day without a nap and sleeping for 30, 40, sometimes 50 hours straight after and missing beautiful days that you know are limited. It's having to search for the giant size pill separator box because even the 2 you used at once won't hold them anymore. It's pain. A lot of pain. It doesn't go away, it's always there. No one will give you a prescription for morphine that is the only thing that takes it all away. It's frustration. Frustration with your own inabilities. Frustration with the medical field. Frustration with your family that just doesn't "get it". It's not wanting to tell your Mother how it really is because you'll know she'll cry. It's loneliness. Not outward. The loneliness of your thoughts when you turn the light out at night and think about tomorrow. There is no anger, it's way past that. Very little humor. It's about living on disability and at the end of the day you get paid, after paying all your bills, and going through your budget, you have $70.48 for the rest of the month and recalling a time $70.48 was a lunch tab. It's problems peeing, eating, walking, sitting, reading, speaking, remembering, having sex, shopping, showering, dressing, concentrating, comprehending, standing and seeing. It's a complex ballet of drug reactions, ever changing physical abnormalities, constantly changing emotions and mental paradoxes. It's about making "lists". The kind that dying people make. Lists of things you want to do, places you want to go, people you want to see when all the while you know in your heart you know you probably won't have the energy or resources to do them. It's not about "hope". It's not about "wish". It's not about "dreams". It's about reality. It is only too real. Allan with 2 L's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Sad, and very scary. De ESLD in Real Terms What is ESLD in real terms? It's spending Christmas with family and looking at photos and not knowing who is in the photo because you can't remember who the people are when all of your life you've had a near photographic memory. It's trying to write something and having to use 2 hands because they both shake. It's going to bed at 10PM after taking 2 sleeping pills, 2 tranquilizers and an anti-psychotic drug and then being wide awake at 1 AM. So you take 2 more sleeping pills and that gets you until 4 AM before you're wide awake again. So maybe 2 more tranquilizers and toss and turn for an hour until you finally fall asleep only to wake up at 7 AM. Then it's anti-fatigue pills to try and make it through the day. It's having a long day without a nap and sleeping for 30, 40, sometimes 50 hours straight after and missing beautiful days that you know are limited. It's having to search for the giant size pill separator box because even the 2 you used at once won't hold them anymore. It's pain. A lot of pain. It doesn't go away, it's always there. No one will give you a prescription for morphine that is the only thing that takes it all away. It's frustration. Frustration with your own inabilities. Frustration with the medical field. Frustration with your family that just doesn't " get it " . It's not wanting to tell your Mother how it really is because you'll know she'll cry. It's loneliness. Not outward. The loneliness of your thoughts when you turn the light out at night and think about tomorrow. There is no anger, it's way past that. Very little humor. It's about living on disability and at the end of the day you get paid, after paying all your bills, and going through your budget, you have $70.48 for the rest of the month and recalling a time $70.48 was a lunch tab. It's problems peeing, eating, walking, sitting, reading, speaking, remembering, having sex, shopping, showering, dressing, concentrating, comprehending, standing and seeing. It's a complex ballet of drug reactions, ever changing physical abnormalities, constantly changing emotions and mental paradoxes. It's about making " lists " . The kind that dying people make. Lists of things you want to do, places you want to go, people you want to see when all the while you know in your heart you know you probably won't have the energy or resources to do them. It's not about " hope " . It's not about " wish " . It's not about " dreams " . It's about reality. It is only too real. Allan with 2 L's Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 I got $100K when the kids were much younger. I planned on reducing it after they were grown, but I’ll probably leave it now since I’d have to jump through so many hoops to get more because of the hep. Scatter my ashes somewhere, kids, don’t waste money on a box & a rock & a fancy funeral. That’s what I say. De Re: Re: ESLD in Real Terms Smart man..I got one for $65,000.00 myself..Personaly the husband and myself thought it would be a good idea..Eh! Why not.. Boo Quote Link to comment Share on other sites More sharing options...
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