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Hi,
I am the mom of a 27 year old who was horribly injured in a automobile accident in the summer of 2002. She endured at least 13 operations and was diagnosed with severe PTSD and CRPS in 2004 when after one to loosen her joints, her arm and elbow just got stuck. She fortunately was directed to a series of doctors, one of which recognised the symptoms and began treatment starting with nerve blocks and manipulation to get things moving. She endured about 20 of these things over the next few years along with all the other symptoms of temperature, colour along with big sores that attacked her skin grafts and scars. The problems then went from her left arm into her right and then to her face.Life went on and the symptoms continued suddenly she noticed burning in her feet and now it has traveled there,
She has also the problems with concentration, unable to focus, read a book, do a craft or take a course. She has just started driving again but is unable to drive on her own or for long periods of time. Next week she is to attend the UCLA pain Clinic with Dr Praeger in Los Angeles for 4 weeks to try and help her and get some strategies to meake life better for her. Of course I have to attend with her as she cannot be alone due to the NES/PTSD seizures.
The problem i am having is the attitude of others to her problem. I have been accused of being an enabler as she just has to get over it and it is all my fault that she can't. That I make too much of her symptoms and "baby " her too much. Sometimes even her Dad and brother have made comments that are along these lines and her Dad actually lives with in the same house as her. Her brother moved out soon after the accident and is making his life without her.
I gave up work to look after her as the care bills were eating into her settlement and although I don't regret it one minute I am finding it hard to deal with the moods and depression she goes through sometimes saying things like she doesn't want to go on.
How do other people deal with this? How do you stay positive when your child is in such pain that she cries at night because of spasms and cramps ( Quinine has helped this enormously).
How do you stay positive when you see a beautiful girl be left behind in life as she can't even make a phone call to friends and has all but isolated herself so long that no one even bothers to call her anymore.
That he future is so uncertain. who will take care of her in the future when we are too old, her brother"s longtime girlfriend isn't interested in her and will not even ask her for coffee. There is no one else at this time.
My heart breaks each night when I say goodnight to her and check the medications, she forgets if she has taken them. There seems to be no one we can relate to in the same situation in Vancouver Canada. Perhaps if we could find someone in a similar position to hang out with things may be a little better, is there anyone out there?
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Hello:
I too am a mother of a 20 year old young lady who finished Pastry College with a 4.0 and never missed a day of class only now to be in so much pain after just having foot surgery. My daughter had foot surgery in 2004 in which after the cast came off her foot turned a purplish color in which the doctor said it must be run in the family. Well, Sam couldn't use the foot too much so the doctor did another two surgeries in which the last one got infected. The doctor gave her 750 ml of levaquin where Sam had a horrible reaction. I took her to the ER 5 times in such a bad condition only to say she was doing this to herself because she is 20 years old and a girl. Well to make our story a little shorter, we went to 5 hospitals here in Alaska, the Mayo in Arizonia to finally getting a diagnoses in 15 minutes with a doctor here in Alaska, she now has full body RSD/CRPS just from foot surgery. She has had some good days where you enjoy seeing her smile and joke with me and her brother, but after all those doctors saying it was in her head, she has lost her Dad's belief, Unlces and Aunties saying too maybe she is doing this to herself. I am now leaving her Dad of 24 years of marriage and am seeking a doctor in New Jersey hoping he will consider performing the low dose ketamine treatment as Sam's condition is getting bad again. She has been in a flare for two weeks now. The only drug she could take was demerol, but because she has been in a flare she used all the demerol and is now too use to it. I do not know what we will do for pain relieve. After reading your email, I am in your shoes. After raising my daughter, her sister, and two brothers, I devotedly will not let her suffer by herself. She has made my life so enjoyable while she was growing up. She feels so alone in this disease, she is in contact with a little girl in England who has full body RSD too, after a year and a half and loosing her father to disbelief too, she is now walking but with pain. The RSD web site has kept my daughter feeling like she is not alone. I feel for you and your daughter, but you both are not alone. Please write and if you and I could share some ideas in helping our daughters feel more comfortable and knowing they are loved so much please do. RSD patients loose so much from themselves it seems so unfair. My daughter wants to quit so much when she is in a flare that I could feel her pain and understanding for giving up. I keep holding her and just reminding her I will find relief for her somewhere and somehow. I just had a hestericomy and am recovering. As soon as I know I could make the drive to New Jersey area and Sam is not in a flare, we will start the drive. We can not fly no more as the air pressure crushes her body. The altitude changes even in the car is going to be bad. Well, it was good to read your message and just cried as Sam is hurting so much too, she keeps saying sorry to me but I just say sorry to her as it usually is the moms that could make the pain go away. I feel so helpless some times. But believing in yourself and knowing we could find help somewhere keeps me going. Thanks for your questions and seeking help from others as like you said, when you have family members turn their back it makes things worse, I just keep letting Sam know she is better than that and their attitudes. I will be thinking of you and your daughter. We live here in Alaska, born and raised and also commercial fish. But am willing to move to help my daughter.
Take care and god bless you both.
Lorri Cockrell
From: [email protected]
To: [email protected]
Subject: New member
Date: Sun, 24 Aug 2008 22:17:43 -0700
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| From: coolcaregiver |
Hi,
I am the mom of a 27 year old who was horribly injured in a automobile accident in the summer of 2002. She endured at least 13 operations and was diagnosed with severe PTSD and CRPS in 2004 when after one to loosen her joints, her arm and elbow just got stuck. She fortunately was directed to a series of doctors, one of which recognised the symptoms and began treatment starting with nerve blocks and manipulation to get things moving. She endured about 20 of these things over the next few years along with all the other symptoms of temperature, colour along with big sores that attacked her skin grafts and scars. The problems then went from her left arm into her right and then to her face.Life went on and the symptoms continued suddenly she noticed burning in her feet and now it has traveled there,
She has also the problems with concentration, unable to focus, read a book, do a craft or take a course. She has just started driving again but is unable to drive on her own or for long periods of time. Next week she is to attend the UCLA pain Clinic with Dr Praeger in Los Angeles for 4 weeks to try and help her and get some strategies to meake life better for her. Of course I have to attend with her as she cannot be alone due to the NES/PTSD seizures.
The problem i am having is the attitude of others to her problem. I have been accused of being an enabler as she just has to get over it and it is all my fault that she can't. That I make too much of her symptoms and "baby " her too much. Sometimes even her Dad and brother have made comments that are along these lines and her Dad actually lives with in the same house as her. Her brother moved out soon after the accident and is making his life without her.
I gave up work to look after her as the care bills were eating into her settlement and although I don't regret it one minute I am finding it hard to deal with the moods and depression she goes through sometimes saying things like she doesn't want to go on.
How do other people deal with this? How do you stay positive when your child is in such pain that she cries at night because of spasms and cramps ( Quinine has helped this enormously).
How do you stay positive when you see a beautiful girl be left behind in life as she can't even make a phone call to friends and has all but isolated herself so long that no one even bothers to call her anymore.
That he future is so uncertain. who will take care of her in the future when we are too old, her brother"s longtime girlfriend isn't interested in her and will not even ask her for coffee. There is no one else at this time.
My heart breaks each night when I say goodnight to her and check the medications, she forgets if she has taken them. There seems to be no one we can relate to in the same situation in Vancouver Canada. Perhaps if we could find someone in a similar position to hang out with things may be a little better, is there anyone out there?
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Hello:
I too am a mother of a 20 year old young lady who finished Pastry College with a 4.0 and never missed a day of class only now to be in so much pain after just having foot surgery. My daughter had foot surgery in 2004 in which after the cast came off her foot turned a purplish color in which the doctor said it must be run in the family. Well, Sam couldn't use the foot too much so the doctor did another two surgeries in which the last one got infected. The doctor gave her 750 ml of levaquin where Sam had a horrible reaction. I took her to the ER 5 times in such a bad condition only to say she was doing this to herself because she is 20 years old and a girl. Well to make our story a little shorter, we went to 5 hospitals here in Alaska, the Mayo in Arizonia to finally getting a diagnoses in 15 minutes with a doctor here in Alaska, she now has full body RSD/CRPS just from foot surgery. She has had some good days where you enjoy seeing her smile and joke with me and her brother, but after all those doctors saying it was in her head, she has lost her Dad's belief, Unlces and Aunties saying too maybe she is doing this to herself. I am now leaving her Dad of 24 years of marriage and am seeking a doctor in New Jersey hoping he will consider performing the low dose ketamine treatment as Sam's condition is getting bad again. She has been in a flare for two weeks now. The only drug she could take was demerol, but because she has been in a flare she used all the demerol and is now too use to it. I do not know what we will do for pain relieve. After reading your email, I am in your shoes. After raising my daughter, her sister, and two brothers, I devotedly will not let her suffer by herself. She has made my life so enjoyable while she was growing up. She feels so alone in this disease, she is in contact with a little girl in England who has full body RSD too, after a year and a half and loosing her father to disbelief too, she is now walking but with pain. The RSD web site has kept my daughter feeling like she is not alone. I feel for you and your daughter, but you both are not alone. Please write and if you and I could share some ideas in helping our daughters feel more comfortable and knowing they are loved so much please do. RSD patients loose so much from themselves it seems so unfair. My daughter wants to quit so much when she is in a flare that I could feel her pain and understanding for giving up. I keep holding her and just reminding her I will find relief for her somewhere and somehow. I just had a hestericomy and am recovering. As soon as I know I could make the drive to New Jersey area and Sam is not in a flare, we will start the drive. We can not fly no more as the air pressure crushes her body. The altitude changes even in the car is going to be bad. Well, it was good to read your message and just cried as Sam is hurting so much too, she keeps saying sorry to me but I just say sorry to her as it usually is the moms that could make the pain go away. I feel so helpless some times. But believing in yourself and knowing we could find help somewhere keeps me going. Thanks for your questions and seeking help from others as like you said, when you have family members turn their back it makes things worse, I just keep letting Sam know she is better than that and their attitudes. I will be thinking of you and your daughter. We live here in Alaska, born and raised and also commercial fish. But am willing to move to help my daughter.
Take care and god bless you both.
Lorri Cockrell
From: [email protected]
To: [email protected]
Subject: New member
Date: Sun, 24 Aug 2008 22:17:43 -0700
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| From: coolcaregiver |
Hi,
I am the mom of a 27 year old who was horribly injured in a automobile accident in the summer of 2002. She endured at least 13 operations and was diagnosed with severe PTSD and CRPS in 2004 when after one to loosen her joints, her arm and elbow just got stuck. She fortunately was directed to a series of doctors, one of which recognised the symptoms and began treatment starting with nerve blocks and manipulation to get things moving. She endured about 20 of these things over the next few years along with all the other symptoms of temperature, colour along with big sores that attacked her skin grafts and scars. The problems then went from her left arm into her right and then to her face.Life went on and the symptoms continued suddenly she noticed burning in her feet and now it has traveled there,
She has also the problems with concentration, unable to focus, read a book, do a craft or take a course. She has just started driving again but is unable to drive on her own or for long periods of time. Next week she is to attend the UCLA pain Clinic with Dr Praeger in Los Angeles for 4 weeks to try and help her and get some strategies to meake life better for her. Of course I have to attend with her as she cannot be alone due to the NES/PTSD seizures.
The problem i am having is the attitude of others to her problem. I have been accused of being an enabler as she just has to get over it and it is all my fault that she can't. That I make too much of her symptoms and "baby " her too much. Sometimes even her Dad and brother have made comments that are along these lines and her Dad actually lives with in the same house as her. Her brother moved out soon after the accident and is making his life without her.
I gave up work to look after her as the care bills were eating into her settlement and although I don't regret it one minute I am finding it hard to deal with the moods and depression she goes through sometimes saying things like she doesn't want to go on.
How do other people deal with this? How do you stay positive when your child is in such pain that she cries at night because of spasms and cramps ( Quinine has helped this enormously).
How do you stay positive when you see a beautiful girl be left behind in life as she can't even make a phone call to friends and has all but isolated herself so long that no one even bothers to call her anymore.
That he future is so uncertain. who will take care of her in the future when we are too old, her brother"s longtime girlfriend isn't interested in her and will not even ask her for coffee. There is no one else at this time.
My heart breaks each night when I say goodnight to her and check the medications, she forgets if she has taken them. There seems to be no one we can relate to in the same situation in Vancouver Canada. Perhaps if we could find someone in a similar position to hang out with things may be a little better, is there anyone out there?
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Hi Lorri,
Thank you for your kind message. i am sorry to hear that your daughter and mine have similar troubles. It was nice however to get your letter as I do feel that I am reinventing the wheel working things out here. I am lucky in the way that, although her Dad is somewhat disbelieving sometimes he is mostly supportive. I think men can't take it when their little girls are hurting because Dads are supposed to keep them safe. The two steps forward and the one step back makes him frustrated as he wants her to be as she was, back in university and out and about, j ust having a real life.
I answered the lesions question on how we deal with them. The band aids work for the small ones but the other may help with the large one she has. They last for weeks though and over a month ago my daughter had a small mole removed and it is still not properly healed as it went into one of the sores.
You say you are looking into the ketamine infusions, The doctor we are going to see in California does use them. His name is Dr Joshua Praeger and he is an expert in RSD. He also implants the spinal stimulators, which a year ago he suggested but her RSD has spread so we are not looking at now. He is part of the UCLA pain clinic and hopefully he can help her. The program uses lots of psychology and bio feedback along with exercise and a reiew of her drugs. I will keep you posted on how things go as if it works for my daughter, it may help yours too. Who is the doctor you are hoping to see in New Jersey?
Take care of yourselves and I will be thinking of you also.
Diane Bhimji |
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My dear ,,,, dear,,,, My heart cries for you rite now!!!! Our sytem of drs n professionals are not so professional at all. Soo sad!!!!!!!!! My dear,,, I am certain that you are not the only one in this situation at all. If We were closer,,, I would have u both over all the time. I to am isolated. not by choice,,, but cause noone caring enuff!!!! I am going into ten yrs with rsd. Thankfully,, all the treatments has just slowed my down. Now with the stress n all changes in my life n adding on more stress,,, and infections n things,,,, rsd and ms is starting too go into high casuality warfare is seeming. I am just working too stay on top of it all. Nothing that I would want to have too have anyone going thru this not at all. Wishing,,, we closer.. But am on messenger signed in all time,,, give me shouts,,,, will answer as soon as receive. Please know we are all dealing with issues here. huggzzz dear one!!!!!! |
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