Someone please help me
Posted by Agape
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Someone please help me February 19, 2001 06:10PM |
I have read a small bit of the threads of conversation that are woven on this page, and I feel very blessed to have stumbled onto it at all.
Katie I read your outreach and you are truly wonderful, I wanted to address you specifically, but I just feel the need to hear from as many people as possible on this.
It's funny. I just read the post on God, and I am sure that all of you Christians are wondering if Agape is my given name. Yes, it is. For those of you who don't know, Agape is a greek word that means unconditional, or Godly love. All of my life I have tried to live in a way that reflects my name. I am not an overly religious person, as a matter of fact, I don't ever go to church, and I usually get really ticked off if people impose their beliefs on me, but I found myself, last night, knelt beside my bed praying fervently to God to help me understand what he just laid on my plate.
Let me tell you all the story of my life.
I am a 24 year old college student. I have lived a blissfully ignorant life up until this Saturday, February 17. A day that i will remember with astonishing clarity until the day that I die. I have always been a hypochondriac. Every sniffle, every headache, every bruise, every EVERYTHING was some indication that I was going to die. You see, I love life more than anything else in this world. I think that I am probably one of the few people (and I am being very presumptuous here) that remembers to look up at the colors of the trees. Remembers to breathe deep and take notice of all the little miraculous things around me. I just love life more than I could put into words.
My sister came home this weekend from visiting our estranged father. I was 2 when my parents divorced and my birth father has chosen to be a father only when it was convienant to him. I don't know how much to blame him though. He came from a very poor, very uneducated family. In fact he was the first, and only person in his family to graduate from high school. So it was no surprise that when his father was diagnosed with HD at death, that he didn't see any cause to investigate it further. To tell you the truth, I don't even think he had an inkling then of what HD was, and I can sure tell you that he is completely ignorant of it now. My father is 51 years old. My sister came back from visiting him and told me about his behavior. Crying all the time, inappropriate affect, forgetting things.....you see, I am one semester shy of my bachelors in nursing. Having already completed my psychiatric rotations, I started to think of the possibilities of things that could be causing him to behave this way. I briefly thought of Huntington's, but I said to myself, 'Agape, if there was HD in the family, your mom or someone would have told you.' I ran a few things by my sister and she said, "Well, now that you mention it, he did say that his father had some sort of psychiatric illness, but I don't remember the name, it was long though." I looked at her and could already feel my stomach tying into a million knots. I said, "Was it Huntington's Disease?" She looked at me and said "Yeah, that's it." I became frantic, panicked, I said, "Are you SURE?". "Yes," was all she said. I flew from the room to my mothers room and asked her whether HD was a sex linked or autosomal trait. In my minds fury I couldn't think of anything. She sat up and said, "It is a Mendellian trait."
My life fell to pieces in that moment. I ran to my room, gathered all of my nursing books that would give me clues to this disease and ran back to my mothers. I looked in my medical dictionary and started screaming, "if he's got it, that means there is a 50% chance that I've got it. Oh my God! I've got Hungtington's Disease!" (and I do overreact sometimes, but that was all I could think of. That I MUST have it.). I was unable to function really. I was trying to gather myself and compose myself, but this news made me physically ill. Everything was rushing through my mind all at once. I came up to my mother and said, "Oh my God Mom, I could have Huntingtons!," the tears were streaming down my face and I was shaking beyond control. She looked at me very sadly and said "I know," and she started to cry. I looked at her and said "YOU'VE KNOWN????? YOU'VE KNOWN MY WHOLE LIFE AND NEVER TOLD ME????" She started crying even harder and said "Yes, because I know how you are, and how you would react, and I wanted you to be able to live a life free from the knowledge for as long as possible, and there was just never a good time to tell you."
So, in addition to the horror of finding this all out, I felt utterly betrayed by my mother, my family, EVERYONE. I had been planning a life for myself, never including the possibilty that I may have HD. I can remember learning about it in school and thinking 'Those poor people. That is so awful. I am so happy that doesn't run in my family.' But all that time, it was always there, just unknown to me.
I continue to be terrified. This is only the 3rd day that I have known this, and I am amazed that I have only cried once today. I had a test this morning and didn't do as well as I would have like, I couldn't concentrate. My whole body felt like it was on fire. My heart was always pounding in my chest. I am a runner. My heart rate is normally in the 40ies. NEVER pounding. I am a straight A student. I NEVER miss stupid questions, but today I did all of those things.
I am lucky to have a very supportive boyfriend who has been my rock from the moment I have found out. Many times over the past 3 days I have felt like he is the ONE person that I can trust not to lie to me, but he keeps telling me things like, calm down, it will be ok. That isn't good enough. I need to hear from someone else who is feeling the same way I am. Uncertain as to whether or not I may have it, whose life has been turned upside down with fear. I want someone to tell me, "don't worry, you don't have to calm down right now. I KNOW what you must be feeling." I want to know that I am not alone, because right now, more than anything in the world, I feel more alone than I have my entire life. Please, if you can write me something back tonight, I vigilantly check my email, and have added this site to my list of "favorites". If someone can extend a hand that I might be able to hold onto for awhile until I can find my own feet again, I would be forever in your debt.
Sincerly,
Agape
Katie I read your outreach and you are truly wonderful, I wanted to address you specifically, but I just feel the need to hear from as many people as possible on this.
It's funny. I just read the post on God, and I am sure that all of you Christians are wondering if Agape is my given name. Yes, it is. For those of you who don't know, Agape is a greek word that means unconditional, or Godly love. All of my life I have tried to live in a way that reflects my name. I am not an overly religious person, as a matter of fact, I don't ever go to church, and I usually get really ticked off if people impose their beliefs on me, but I found myself, last night, knelt beside my bed praying fervently to God to help me understand what he just laid on my plate.
Let me tell you all the story of my life.
I am a 24 year old college student. I have lived a blissfully ignorant life up until this Saturday, February 17. A day that i will remember with astonishing clarity until the day that I die. I have always been a hypochondriac. Every sniffle, every headache, every bruise, every EVERYTHING was some indication that I was going to die. You see, I love life more than anything else in this world. I think that I am probably one of the few people (and I am being very presumptuous here) that remembers to look up at the colors of the trees. Remembers to breathe deep and take notice of all the little miraculous things around me. I just love life more than I could put into words.
My sister came home this weekend from visiting our estranged father. I was 2 when my parents divorced and my birth father has chosen to be a father only when it was convienant to him. I don't know how much to blame him though. He came from a very poor, very uneducated family. In fact he was the first, and only person in his family to graduate from high school. So it was no surprise that when his father was diagnosed with HD at death, that he didn't see any cause to investigate it further. To tell you the truth, I don't even think he had an inkling then of what HD was, and I can sure tell you that he is completely ignorant of it now. My father is 51 years old. My sister came back from visiting him and told me about his behavior. Crying all the time, inappropriate affect, forgetting things.....you see, I am one semester shy of my bachelors in nursing. Having already completed my psychiatric rotations, I started to think of the possibilities of things that could be causing him to behave this way. I briefly thought of Huntington's, but I said to myself, 'Agape, if there was HD in the family, your mom or someone would have told you.' I ran a few things by my sister and she said, "Well, now that you mention it, he did say that his father had some sort of psychiatric illness, but I don't remember the name, it was long though." I looked at her and could already feel my stomach tying into a million knots. I said, "Was it Huntington's Disease?" She looked at me and said "Yeah, that's it." I became frantic, panicked, I said, "Are you SURE?". "Yes," was all she said. I flew from the room to my mothers room and asked her whether HD was a sex linked or autosomal trait. In my minds fury I couldn't think of anything. She sat up and said, "It is a Mendellian trait."
My life fell to pieces in that moment. I ran to my room, gathered all of my nursing books that would give me clues to this disease and ran back to my mothers. I looked in my medical dictionary and started screaming, "if he's got it, that means there is a 50% chance that I've got it. Oh my God! I've got Hungtington's Disease!" (and I do overreact sometimes, but that was all I could think of. That I MUST have it.). I was unable to function really. I was trying to gather myself and compose myself, but this news made me physically ill. Everything was rushing through my mind all at once. I came up to my mother and said, "Oh my God Mom, I could have Huntingtons!," the tears were streaming down my face and I was shaking beyond control. She looked at me very sadly and said "I know," and she started to cry. I looked at her and said "YOU'VE KNOWN????? YOU'VE KNOWN MY WHOLE LIFE AND NEVER TOLD ME????" She started crying even harder and said "Yes, because I know how you are, and how you would react, and I wanted you to be able to live a life free from the knowledge for as long as possible, and there was just never a good time to tell you."
So, in addition to the horror of finding this all out, I felt utterly betrayed by my mother, my family, EVERYONE. I had been planning a life for myself, never including the possibilty that I may have HD. I can remember learning about it in school and thinking 'Those poor people. That is so awful. I am so happy that doesn't run in my family.' But all that time, it was always there, just unknown to me.
I continue to be terrified. This is only the 3rd day that I have known this, and I am amazed that I have only cried once today. I had a test this morning and didn't do as well as I would have like, I couldn't concentrate. My whole body felt like it was on fire. My heart was always pounding in my chest. I am a runner. My heart rate is normally in the 40ies. NEVER pounding. I am a straight A student. I NEVER miss stupid questions, but today I did all of those things.
I am lucky to have a very supportive boyfriend who has been my rock from the moment I have found out. Many times over the past 3 days I have felt like he is the ONE person that I can trust not to lie to me, but he keeps telling me things like, calm down, it will be ok. That isn't good enough. I need to hear from someone else who is feeling the same way I am. Uncertain as to whether or not I may have it, whose life has been turned upside down with fear. I want someone to tell me, "don't worry, you don't have to calm down right now. I KNOW what you must be feeling." I want to know that I am not alone, because right now, more than anything in the world, I feel more alone than I have my entire life. Please, if you can write me something back tonight, I vigilantly check my email, and have added this site to my list of "favorites". If someone can extend a hand that I might be able to hold onto for awhile until I can find my own feet again, I would be forever in your debt.
Sincerly,
Agape
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RE: Someone please help me February 20, 2001 01:03PM |
Oh, dear, I know exactly how you're feeling at this moment. I too found out in a similar manner. While talking to my mom one night (May 23, 1999--my anniversary!) on the phone, trying once again to figure out what was causing the strange symptoms she'd had for ten years, I had a brainstorm. I typed "what causes involuntary movements?" and soon was reading all about HD. As the symptoms were listed, and I read them aloud to her over the phone, I knew she had every one. Then I came to the part about "no treatment, no cure" and I stopped reading aloud.
And then, of course, I read about the genetic aspect, and I started crying softly, trying not to let her know how upset I was. I hung up, and told my husband what I'd discovered, and of course, he thought I was jumping to conclusions. I knew, though, that my mom had HD--it turned out, my grandmother had been diagnosed, very casually, by a neurologist who then refused to take her on as a patient, or answer any further questions from family members.
I immediately thought the worst. I had some slight symptoms myself, which had bothered me before...slurred speech, lack of concentration, depression, anxiety, and occasional numbness in hands and feet. I also shared several other traits with my mom, and felt certain I was following in her footsteps.
I also saw several symptoms in my youngest daughter, who was ten at the time. She was having emotional problems and temper outbursts. So, as you can imagine, I promptly started going to pieces! I could barely function--walked around the house, crying, while my kids were at school, and tried desperately to act normal when they were home. A couple of weeks later, I called my yoga instructor, and she was the first person who listened to me and took my concerns seriously. Before, it was as if there was a big monster in the corner, waiting to gobble me up, and I knew if I took my eye off it, it would. But no one else even knew it was there!
A few months later, I was tested. But by then, however, I was already certain I had it...and equally certain I would be the first to beat the disease. There are many supplements that have showed promise...more about that later, but more importantly, I had developed incredible strength of will. Whatever it took, I decided, I would do, to save myself and my daughter.
A month after testing, on September 28, 1999, the doctor phoned me: my results were negative. I did not have HD. I did, however, have a huge case of survivor guilt. My brother and aunt still have not been tested.
I have remained very active in the HD community, trying to find a treatment for my mom, and helping others like you who are at risk. There has recently been exciting news about a substance in fish oil, EPA, which has shown amazing results for HD patients. There is info about this at www.HDLighthouse.org. Cruise that site, and do visit the forum there. Many HD patients are trying EPA, with positive results.
If you need more support, please feel free to email me: ksflake*at*home.com. Many people contacted me and offered support when I needed it, and I will gladly return their kindness. No one knows what you're feeling right now, including your boyfriend (glad he's supportive, though! Keep him!) or your mother or your doctor.
Hang in there. It gets better. I found a strength I didn't know I had, and an internet community of helpful strangers and fellow at-riskers.
Good luck, and remember, others have seen that monster too, and some have even conquered it!
Kathy
And then, of course, I read about the genetic aspect, and I started crying softly, trying not to let her know how upset I was. I hung up, and told my husband what I'd discovered, and of course, he thought I was jumping to conclusions. I knew, though, that my mom had HD--it turned out, my grandmother had been diagnosed, very casually, by a neurologist who then refused to take her on as a patient, or answer any further questions from family members.
I immediately thought the worst. I had some slight symptoms myself, which had bothered me before...slurred speech, lack of concentration, depression, anxiety, and occasional numbness in hands and feet. I also shared several other traits with my mom, and felt certain I was following in her footsteps.
I also saw several symptoms in my youngest daughter, who was ten at the time. She was having emotional problems and temper outbursts. So, as you can imagine, I promptly started going to pieces! I could barely function--walked around the house, crying, while my kids were at school, and tried desperately to act normal when they were home. A couple of weeks later, I called my yoga instructor, and she was the first person who listened to me and took my concerns seriously. Before, it was as if there was a big monster in the corner, waiting to gobble me up, and I knew if I took my eye off it, it would. But no one else even knew it was there!
A few months later, I was tested. But by then, however, I was already certain I had it...and equally certain I would be the first to beat the disease. There are many supplements that have showed promise...more about that later, but more importantly, I had developed incredible strength of will. Whatever it took, I decided, I would do, to save myself and my daughter.
A month after testing, on September 28, 1999, the doctor phoned me: my results were negative. I did not have HD. I did, however, have a huge case of survivor guilt. My brother and aunt still have not been tested.
I have remained very active in the HD community, trying to find a treatment for my mom, and helping others like you who are at risk. There has recently been exciting news about a substance in fish oil, EPA, which has shown amazing results for HD patients. There is info about this at www.HDLighthouse.org. Cruise that site, and do visit the forum there. Many HD patients are trying EPA, with positive results.
If you need more support, please feel free to email me: ksflake*at*home.com. Many people contacted me and offered support when I needed it, and I will gladly return their kindness. No one knows what you're feeling right now, including your boyfriend (glad he's supportive, though! Keep him!) or your mother or your doctor.
Hang in there. It gets better. I found a strength I didn't know I had, and an internet community of helpful strangers and fellow at-riskers.
Good luck, and remember, others have seen that monster too, and some have even conquered it!
Kathy
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RE: Someone please help me February 20, 2001 08:28PM |
Agape,
Your story practically brings me to tears. I am so sorry that all of that had to happen to you and that it happened as fast at it did. I can imagine that you're completly frustrated and utterly confused. I am glad though that your boyfriend is offering so much support to you right now, as Kathy pointed out. I can remember when I first heard that my father had been diagnosed with HD, my entire life flipped in a matter of seconds. That was almost seven years ago, and I can rememeber every detail of that moment in slow motion as if it happened yesterday. It is a moment that I will remember for the rest of my life, as I'm sure you will as well. But, I want you to know, that you have come to the right place. I'm sure you're completly disoriented and just need someone to talk to who can relate on a similar scale. Please, please, e-mail me if you just want to vent. I have AIM so if you really need to talk, please IM me. My computer's broken at the moment, but my sweet sweet roommate lets me use her computer and her AIM screen name is DeterG1. Keep smiling and just remember to look up at those miraculous trees!! I wish you well and I will look for you online, and on the site if you want to talk. Take care.
Katie
Your story practically brings me to tears. I am so sorry that all of that had to happen to you and that it happened as fast at it did. I can imagine that you're completly frustrated and utterly confused. I am glad though that your boyfriend is offering so much support to you right now, as Kathy pointed out. I can remember when I first heard that my father had been diagnosed with HD, my entire life flipped in a matter of seconds. That was almost seven years ago, and I can rememeber every detail of that moment in slow motion as if it happened yesterday. It is a moment that I will remember for the rest of my life, as I'm sure you will as well. But, I want you to know, that you have come to the right place. I'm sure you're completly disoriented and just need someone to talk to who can relate on a similar scale. Please, please, e-mail me if you just want to vent. I have AIM so if you really need to talk, please IM me. My computer's broken at the moment, but my sweet sweet roommate lets me use her computer and her AIM screen name is DeterG1. Keep smiling and just remember to look up at those miraculous trees!! I wish you well and I will look for you online, and on the site if you want to talk. Take care.
Katie
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RE: Someone please help me February 22, 2001 08:01AM |
Agape,
I feel very much for you. I too found out only recently of this disease in my family.
My mum was displaying symptoms of something but we never believed that it would turn out to be HD, we have no family history. Our world also was turned upside down and we began to ride an emotional roller coaster. The ride goes on, at times it seems to slow and steady, we seem to get a handle on things and other times it goes so fast we feel we will never escape the torment of this disease.
I look at my four beautiful children and wonder, what does their future hold.
I wonder when to tell them and how they will react.
While we have only recently, 4 months ago, found out about our mum, more recently we discovered also that my father was a carrier of this disease.
Two of my sisters have both chromosones effected. They have a 41 and a 35 each. they look at their children and know they have no escape, mine have some chance at least.
I can appreciate exactly how you are feeling. I can only say hang in there, cry as often as you like, talk to people that you feel comfortable in talking to about this and allow to time to help you heal.
There is hope, we must believe that there is hope, so much is being learnt all the time. You are young, I feel confident that in the next 20 years much will be discovered. My mum perhaps will not be able to be helped, I believe my sisters will be able to be helped through treatment or cure, I feel sure that my children will be helped, and I know with out a doubt that my grandchildren will not have to physically suffer this disease themselves. Already my grandchildren are saved through embryo testing.
Good luck and keep in touch
Lesley
I feel very much for you. I too found out only recently of this disease in my family.
My mum was displaying symptoms of something but we never believed that it would turn out to be HD, we have no family history. Our world also was turned upside down and we began to ride an emotional roller coaster. The ride goes on, at times it seems to slow and steady, we seem to get a handle on things and other times it goes so fast we feel we will never escape the torment of this disease.
I look at my four beautiful children and wonder, what does their future hold.
I wonder when to tell them and how they will react.
While we have only recently, 4 months ago, found out about our mum, more recently we discovered also that my father was a carrier of this disease.
Two of my sisters have both chromosones effected. They have a 41 and a 35 each. they look at their children and know they have no escape, mine have some chance at least.
I can appreciate exactly how you are feeling. I can only say hang in there, cry as often as you like, talk to people that you feel comfortable in talking to about this and allow to time to help you heal.
There is hope, we must believe that there is hope, so much is being learnt all the time. You are young, I feel confident that in the next 20 years much will be discovered. My mum perhaps will not be able to be helped, I believe my sisters will be able to be helped through treatment or cure, I feel sure that my children will be helped, and I know with out a doubt that my grandchildren will not have to physically suffer this disease themselves. Already my grandchildren are saved through embryo testing.
Good luck and keep in touch
Lesley
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RE: Someone please help me February 22, 2001 06:16PM |
To everyone who has reached out to me, not only through the message board, but via email as well........I will never be able to tell you how much I appreciate you ALL. Every one of you who have opened yourselves to me, you have really given me such a gift. *Some peace of mind.* I no longer feel so alone, so ignorant, so uncertain. I suppose it is easy when your world is crumbling to think that nobody could possibly understand how you are feeling, and maybe nobody every REALLY understands exactly how another does feel, but I do not feel alone anymore. And that is such a wonderful blessing.
I find that as I have had some time to acclimate myself to this idea and begin my journey of discovery, if you will, that I have grown less frightened. I think that maybe I might just be trying to avoid believing that this is so (I'm searching for every loophole and THEN SOME!) but for some strange reason I feel more at peace. The second night after finding this out, I knelt and prayed for some peace in dealing with this, and miraculously since then I've felt like I'm encased in a cocoon of serenity. I'll probably get my ticket for the neverending roller coaster ride here soon, but until then, I'm enjoying this wave of calm.
I just wanted to say thank you to everyone. I haven't gotten a chance to answer all the emails that I would like to, although they are all saved, I just haven't found enough time yet!
Agape
I find that as I have had some time to acclimate myself to this idea and begin my journey of discovery, if you will, that I have grown less frightened. I think that maybe I might just be trying to avoid believing that this is so (I'm searching for every loophole and THEN SOME!) but for some strange reason I feel more at peace. The second night after finding this out, I knelt and prayed for some peace in dealing with this, and miraculously since then I've felt like I'm encased in a cocoon of serenity. I'll probably get my ticket for the neverending roller coaster ride here soon, but until then, I'm enjoying this wave of calm.
I just wanted to say thank you to everyone. I haven't gotten a chance to answer all the emails that I would like to, although they are all saved, I just haven't found enough time yet!
Agape
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RE: Someone please help me February 23, 2001 05:56AM |
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RE: Someone please help me March 07, 2001 01:35AM |
Agape
can i give you some words of wisdom if you don't mind
my father died march 12 1996 at age 43 of HDi am about to turn 20 next month and ive known about HD in my family since i was old enuf to read about it and it was never hidden from me i think i would have been better off not knowing about it trust me its hard to deal with your life as a flip of a coin you have it or you don't my wisdom to you is life is short and just live itand don't worry about it so much one day at a time thats and you have a good man with you my ex fiance left me because she wanted to have kids and i told her about my chances of having HD and she got scared and left me and all i had to say in the long run is *at*!#$ happens
HANG IN THERE
RHONALD
can i give you some words of wisdom if you don't mind
my father died march 12 1996 at age 43 of HDi am about to turn 20 next month and ive known about HD in my family since i was old enuf to read about it and it was never hidden from me i think i would have been better off not knowing about it trust me its hard to deal with your life as a flip of a coin you have it or you don't my wisdom to you is life is short and just live itand don't worry about it so much one day at a time thats and you have a good man with you my ex fiance left me because she wanted to have kids and i told her about my chances of having HD and she got scared and left me and all i had to say in the long run is *at*!#$ happens
HANG IN THERE
RHONALD
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RE: Someone please help me July 27, 2001 10:38PM |
Hi Agape,
I think all of us with HD in the family understand what you are going through...No it doesn't get better and No you don't get used to it..but you do learn to just live with it...store it away for a time...live your life to the best of your ability...and yes I also see every color of every leaf and the beauty of the clouds..my girls and I follow sunsets and photograph the skies ultimate colors....We enjoy and treasure every moment. If you'd like to chat..email me anytime...God be with you..Sunshine Cindy
I think all of us with HD in the family understand what you are going through...No it doesn't get better and No you don't get used to it..but you do learn to just live with it...store it away for a time...live your life to the best of your ability...and yes I also see every color of every leaf and the beauty of the clouds..my girls and I follow sunsets and photograph the skies ultimate colors....We enjoy and treasure every moment. If you'd like to chat..email me anytime...God be with you..Sunshine Cindy
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