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I have to confess that I've been avoiding writing here for the last few weeks. It's hard to confront my feeling of disappointment and confusion on what to do next.

As some of you know, I didn't just go to convention while down in Florida this July. I also spent some time in Tampa at the
RSD Treatment Center
for a three day course of four hour Ketamine infusions.

I need to say first that Dr. Kirkpatrack and his assistants were wonderfully compassionate and caring. It's very clear that they care about their patients, keeping them safe and giving them their lives back. As I write this post, I want to make it very clear that I don't blame anyone, and that if asked, I would still recommend this center if someone asked me.

I also want to say that because of the unique problems with RSD and the unique aspects of Ketamine, it was made very clear to me that the outcome of the treatment would be uncertain since I'm the first patient who's blind doing this new treatment. All of that being said, I have to be honest that my pain feels no better than it did before I went for treatment, my anxiety is still a bit more intense than before the treatments, my sleep hasn't remained as good as it was during the three days of treatment and so I am pretty disappointed. The two things which were good from this treatment were an improvement in my depression and some relief of the pain I still have in my right foot from the surgery in June.

Even so, I gained other benefits which were not from the Ketamine itself. Since this treatment center deals only with RSD, I got to meet other patients with this awful disease face to face and through hearing their stories and talking with the doctor and staff at the treatment center, I learned that many of the weird things I experience aren't something I experience alone. It helps to know, for example, that if the pain I feel if someone touches me sticks around, it's not my fault and it's something others with RSD exxperience. I made some new friends and I gained so much from hearing their stories. I'm so gladto have that experience to look back on.

Those benefits are what I am trying to focus on. I still need to write more about so many things, but it's going to be bedtime soon. In addition, the adapter for my MSI Wind died and since it did, I have to use my big laptop until I get it back. That's more painful to hold in my lap. Hopefully the new aadapter will come in the mail soon.


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Aug. 5th, 2009 03:57 am (UTC)
aww I am so sorry to hear about your RSD I hope u feel better and u r in my prayers:) so what kind of chronic pain is that, is it like fibromyalgia, sorry If I am pryng just never heard of it before
Aug. 6th, 2009 01:26 am (UTC)
Re: prayers
Thanks for praying! RSD is hard to explain, but basically it's when the body over responds to an injury and never really stops. The nervous system gets overly sensitive and things like touch and cold are actually painful when they shouldn't be. I have some links in the sidebar of my blog/journal which explain RSD if this comment doesn't help.
Aug. 6th, 2009 06:26 pm (UTC)
Re: prayers
you are so welcome, wow that sounds very dificult. Thank you for explaing that to me.
Aug. 5th, 2009 04:37 am (UTC)
Aw, Nickie, I'm sorry to hear that the treatment center was not as successful as you might have hoped. I'm glad that you were able to have some of your feelings validated, though. I, too, see that as a positive and can imagine how good that must have felt.
Aug. 6th, 2009 01:28 am (UTC)
Yeah, it really helps to understand what's going on in my body and mind better. I don't feel quite as alone as I did before, though of course there are days when my emotions are low. Thanks for your concern.
Aug. 5th, 2009 07:20 pm (UTC)
I know how much it can help just meeting other people who can understand. That's a definote plus. Sorry it didn't give you more pain relief.
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