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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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