Wednesday, May 23, 2012

I'm normal, not a celebrety or a monster!

I'm in Miami helping someone with RSD get her Ketamine, just as she helped me in March. There are some members on an online group that I belong to staying here as well. Some were anxiou to meet me, which was flattering. One young member treated me like a celebrety. Then there are others, who think that I'm an egomaniac when I share the history of Ketamine in Philadelphia (and possibly the US) of which I happen to be a part of. As a nurse, we are trained to teach people about their treatments including the history, of which I just happened to live. I'm just a normal person like the other members with RSD. I have good days and bad ones. Stress aggravates my condition just like everyone else. I'm a normal person trying to use my nursing education to educate and help others. It DOES make me feel useful for the first time since I had to stop working five and a half years into RSD. If that is wrong, then I'm sorry! I miss my little group and desperately want to return but without being added to this group and that group without my permission. I don't know if that is possible. Should I start my own secret group with people that I know and trust? But then I'm not reaching the newly diagnosed or the people who need help. Do I branch out and not just do Ketamine? The admins of the K Klub have that under control. So many decisions, but for now, I'm off to Seattle Sunday to get onto the Disney Wonder on Monday headed to Alska to celebrate my 55th birthday. I return to the Internet June 6th, not as a celebrety or a monster but as a normal person with RSD, who is a nurse, a wife or 34 years, a mom of 31 years and someone who some times cares too much. (((hugs)))

Wednesday, May 16, 2012

I Thought I'd Heard It All!

I've had doctors tell me that RSD can't spread, that it is "all in your head", and many other falsehoods but last week I heard something that blew me away.  It was so off the wall that I just had to chuckle.

My migraine neurologist wanted me to go to a DO for a Osteopathic Manipulation Treatment.  His office made an appointment with a doctor who he recommended.  This neurologist is the head of the FL DO association so one would think that he has a good knowledge base but he is one of those neurologists who says that RSD can't spread so I should have known that the DO diagnostician that he sent me to might not know much about RSD either.

When I arrived, they asked for my history.  When I went in to see the doctor, she began the manipulation. As she was manipulating my head, she was telling me how she took her son to see a doctor in Chicago who was doing this new injection treatment for neuro-inflammation.  She wanted to be sure that I knew that RSD fell into the category of neuro-inflammation.  I reminded her that I was a nurse and that I had had RSD for 16 years.  She went on to tell me about how this treatment involves the injection of D5W (5% Dextrose in water) into the inflamed nerves.  Because of the allodynia on the top of my foot, she wanted to inject the scars from my surgery to fuse my right foot with the D5W (sugar water) to "cure" my RSD.  It took every ounce of restraint for me not to laugh out loud right there.

At the end of the treatment, she wrote down the web site of this doctor so that I could check it out.  I thanked her and quickly exited.  When I went to check out, they wanted me to make an appointment for Monday (this was Friday).  I told the receptionist "I don't think that I will be coming back, thank you" and ran out of the door.

I can not see how any physician can believe that 5% sugar water can reverse nerve damage when it is injected into a 15 year old surgical scar.  It has to be the wildest "cure" that I have heard for this poorly understood disease.  I wonder how many people who are desperate for anything that might help them would pay good money for something like this?  She told me that there is no procedure code for this injection.  Gee, I can't imagine why!  So, she was trying to figure out what to charge for it.  You couldn't pay me to let her stick a needle into my RSD foot.