Hi,

I'm responding to the person who feels that RSD patients cannot be happy and positive. I'm exactly that: happy and positive. I strive to find the good in my grim situation. I have full body RSD since August 2003 from a summer camp accident (laceration on jagged top of a fence) and a TBI from the same accident (hit head on ground after falling over fence), along with some other ailments that are not related to the RSD (ie: asthma, gall bladder, etc.). I got hurt when I was 22 and fresh ou fo college, and I'm currently 28. As I said, I'm suffering symptoms from head to toe: all four limbs/hands/feet, head, face, teeth/gums/mouth, eyes, heart, lungs, uterus, etc. -- really grim situation going on here, as much as I hate to say it. My symptoms are excrutiating and severe, and there is nothing to do about it at this point other than waiting for my turn at ketamine (seel below). Yes, it's easy to say that there's nothing good coming from having RSD. Depression is a HUGE problem in our community where 4/5 out RSDers are depressed. Well, I'm the 1/5 who isn't, and I've met many others who have the same outlook as me (I'd be happy to connect you to some of them if you'd like to hear their opinions on the matter). In part, depression can't be controlled well, and there's often no way to prevent it from happening, though, it can be made a bit better depending upon one's personal philosophies on life.

Yes, RSD has many awful things associated with it: insurance problems, moneraty issues, the pain and symptoms themselves, family/friend constraints, etc. I'm not saying that I don't have a bad moment here or there (and boy, do I have PLENTY of them), but it's what I do with these moments that's key. Whenever something bad or hard happens to me, I try to see the good in it. I have been doing this since long before RSD came into my life. I have always felt that everything in life happens for a reason, and I'm constantly striving to seek out those reasons, learn from them, and use them to better my life. So much good has come from my having RSD: I've met tons of lovely people from all over the world, I've learned about myself and life, and I've become active in a desperately unknown cause that needs to be heard. Those are just a few examples. I run several RSD support groups on Facebook, I'm active with RSDSA and some other major RSD organizations, and I always try to uphold people who are precisely in your position to help them discover the good and meaning behind their own RSD.

Sure, I would have never chosen to have RSD. I haven't been able to finish my MA at NYU in Early Childhood Education, though I still hope that someday I'll be able to go on for a PhD/EdD in Education and become a researcher and professor in the Education field. I've been wishing to be able to go back to being with children in classrooms like I used to while I was working on my BA. I've always wanted to develop my own family, and my eggs are starting to rot because I'm not well enough to date. There are tons of hopes and aspirations I had prior to this sudden accident. I still cling to these dreams, as perhaps there will be hope of remission when I get the ketamine coma (I'm in line for the ketamine coma and infusions with Dr. Schwartzman). And should I never be able to carry out these ideas, I'm sure I will find other ways to fulfill my life. I still try to live life as normally as possible and to the best of my ability. I currently volunteer at NYU Medical Center (where I mostly get treated) at the gift shop and in Pediactric Therapuetic Recreation in the Rehab wing, I tutor/mentor college students at a local public college I attended before the accident, I teach a beading class with senior citizens at a lunch program once a week . . . all in between my various medical appointments. When I get home, I crash during evenings and weekends, but at least I am finding joy in doing manageable things I love and otherwise never would have done were it not for the accident. These experiences have helped to shape my desires in life, as well as expand my horizons. It also helps that anywhere I go, people help me get through my day, else, I wouldn't be able to accomplish all of this. Thanks heaven for good people.

That's my general perspective on the matter. There are good things in bad situations, but you'll only find them if you look for them. In fact, I challenge anyone suffering from RSD depression to take a good look inside themselves to find the meaning and positive value in having RSD. If you need help doing so, I'm always glad to oblige.

While I can't comment on the reason why you may have been rejected, I do know that Dr. Schwartzman has been studying RSD longer than anyone. With the infusions, and especially the coma, he has come the closest to finding a cure than any other doctor in the history of RSD. That's a HUGE deal. While I'm sorry you got rejected, it's still not a reason to bash Dr. Schwartzman's reputation and skills. He's not only an excellent doctor, but a kind-hearted human being who has taken a great cause upon himself in the past 30-35 years of his career. Someone here said that they have to feel that you have a chance at remission and getting back to physical activity and a normal life, and this is entirely true. Most people are, in fact, denied from the infusions or coma for various reasons. While it's quite upsetting to those people, like yourself, you need to remember that there are qualifying factors to the research guidelines. Only the very worst cases are considered for the coma. If you are interested in getting ketamine infusions, there are other places in the US that do them where you can inquire -- you just need to find an experienced, reputable place. Dr. Sherry's program is also excellent, as you said, and I personally know teens who have benefitted. I understand your frustration, but there must have been a good reason if they decided to deny you. I'm sure you could get your hands on the report they wrote following your visit if you call the office to get a copy. You have a right to see your records and understand why you were denied. I hope by now that you have found other treatment modalities since you wrote this post early this year, and if you need help finding other places to get treatment, I'd be happy to help you figure it out.

I don't use these forums often. I was just caught by this conversation while searching the web. If you'd like to contact me, *edit* Please be patient for a response because I'm really not well and often can't get online. I will reply at some point. If it's been a while, remind me to get back to you because my TBI causes me to forget sometimes. And feel free to not only write to me, but send a friend request as well. I am happy to get to know anyone who struggles with this problem and do my best to help you conquer it.

Here's wishing you all a happy day! :-)

xoxoxoxox,
Marsha
*edit*