Our Story ....... by Lorie

From: RSDMom38 (Original Message) Sent: 11/4/2006 4:31 PM
Our story starts 7 years ago, with our daughter Ashley. She became very ill and they thought she had spinal meningitis. They had to do a spinal tap on her, and either she moved or the doctor moved and our hell began. It took 3 years for any one to know what she had. She was in the hospital, her arm was black cold and swollen. They where ready to take her in to amputate her arm, then a wonderful ortho doctor came in and said “no” it’s RSD. How thankful we are for this man. Unfortunately he does not know enough about RSD to treat her. Ashley’s RSD has invaded every part of her body, but yet there are doctors that say it does not spread. She has spent so much time in hospitals just to get her pain under control. Not only the RSD has caused stress in our lives, it’s the people that don’t understand RSD. They tell her it’s in her head, there must be trouble at school or home, ect. I am sure you guys know the routine. Even with a diagnoses from UCLA doctors that think they know everything about RSD (HA!) tell her it’s not RSD.

Last year on Sept. 10th I broke my ankle, at that time RSD never came into my mind. I thought there is no way I could get it also life would not be that cruel. When they took the 1st caste off the vibration from the saw hurt so bad. The nurse kept on saying “this does not hurt” she looked at me like I was crazy. Still RSD did not come into my mind. I had several cast on over the 10 weeks. My ankle kept swelling and again no one knew what it was and why. Walk on it, they kept telling me but I could not do it. So, I made an apt. with the Doctor that had seen Ashley many years before. He didn’t know who I was and that is how I wanted it. I explained to him what was going on. He ordered a bone scan and MRI and surprising enough the people that read the results said it looks like RSD. He looked at me and started to say “there is this nerve disorder that causes unusual pain, and it’s a long road ahead of you” I started to cry, I knew what he was saying, that I too had RSD. One in a million chance for us both to have it. I am one of the lucky ones, it only took them a year to diagnose mine. I have a wonderful doctor that knows tons about RSD and I am so thankful for that. I get blocks done and they help. RSD has taken many things away from myself and my daughter. Our saying is “If we laugh more than we cry, we are doing better than most”

There is our story…

Lorie


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From: byrd45 Sent: 11/8/2006 4:52 PM
Hi LOrie it is great to have you here and thanks for sharing yours and Ashley's story with us.RSD what a monster hitting two people in the same family how devastating for both of you. How horrible that they didn't even believe Ashley! I get so angry everytime I hear that from someone and trust me I have heard that many,many times from other people as well. Noone could make up color changes and swollen limbs. It is so frustrating and RSD does spread if they kept up with research they would know that too.How old is Ashley is she still in school? I was thinking how hard that must be if she is still in school sigh ...You must have been so upset when you realised what was happening to you as well. I like your outlook about laughing I try to do that myself it really does help. I just read your email and will be getting back to you on that. Tell Ashley I am proud of her for wanting to raise awareness and I will help you both anyway I can. Will talk about it more when I write you back I had started writing you last night but had to go to therapy before I could finish. I will try to send it out by tomorrow or the next day so watch for it. Talk to you soon!
Love,
Robyn


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From: RSDMom38 Sent: 11/9/2006 1:14 AM
What a great group this is. Already very kind words, and trust me kind words help so much.
Thank you,
Lorie


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From: airedale-mom Sent: 1/9/2007 9:38 PM
Hi Lori,
I feel so bad for you and your daughter. How old is Ashley now and how is she doing? I hope she has an understanding and supportive group of friends. At UCLA there must be something they can do to help her. People can be so thoughtless. Did they tell you there is any genetic link to RSD. I read where it possibly could be caused by an immune response. I wish you and Ashley the best. Take care, Mary Anne