Nickie Coby (puppybraille) wrote,
Nickie Coby

Cereal infusions?

I can't resist sharing a tastelessly funny thing I discovered recently. Like any vain blogger who wishes for greater success, I was checking around to see if and where my blog posts show up. So naturally, I was googling keywords I thought might be ones my posts would show up under. Anyway, naturally, my first keyword I googled was Ketamine to check if my post about
Ketamine, CRPS treatment and blindness
showed up and how many pages of results it would take to find my post. I know, I know, so vain, but I put my heart and soul into that post and actually was more vulnerable than normal. I was curious to see what was going on in those arinas.

So anyway, here I was, Googling the word "Ketamine". The first sponsored add is for Special K and meal planning from the serial makers. Special K has become somewhat of a joke in our family ever since my Ketamine infusions. See, we learned that the street name for this drug is Special K. This knowledge is really only helpful in regards to laughing at unintended associations between products or laughing at "Special K bars" at the church bake sale but seeing that highly ranked ad really gave me a laughing boost.

On a more serious matter, I wanted to discuss some of the after-effects of Ketamine for me. I think the biggest problem for me was that I experienced many side effects Some expected, some not, after the infusions. I expected muscle weakness, heat intolerance, nausea, headaches and fatigue. What I didn't expect was that after the higher doses of Ketamine, I had trouble with an important task. Basically, I had trouble with spacial reasoning. When trying to eat pancakes at McDonald's, I had trouble imagining the plate and finding the pancakes on the plate. If I was asked to get out of a chair and walk to the door, I had trouble knowing where that chair was when I walked back. My tactile discrimination got better quickly; once the infusions were shut off at the end of the day I was once again able to recognize my dog's fur as feeling like a Yellow Lab's, and even though I couldn't read Braille during the infusions, I have no problem with it now. As the drug's effects decreased I could once again feel and recognize Braille, opperate my technology and describe a task with multiple steps (like how to wrap my heat pack around my leg), and feel that I described them with ease. During the infusions, I could talk and explain these things but I felt very uncertain.

Another big problem has been that I feel like my anxiety has worsened. I also notice that the aches and pains I had before worsened too. I'm now in the process of trying to find out why these other pains which I know aren't RSD are happening.

That said, I still feel that I made the correct decision. The challenges I face as a patient are unique, as they are for each patient. I am still glad that I chose to go ahead with the treatment. If I didn't, I would never have known whether it would have worked. I wouldn't have met the people I met there. I wouldn't have learned more about myself and my RSD. Even though, for me, the Ketamine treatments didn't help my pain, I do believe that the professionals and patients I met did help me.

I want to stress that this post isn't meant to blame anyone, in fact, I highly recommend the doctor I saw for the infusions. It's also just one person's experience. I've heard good things about the Ketamine treatments for patients with Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome. If you're considering the treatments and you feel they are something you want or need to try to relieve your pain, by all means learn what you can about the treatments. Ask questions and take control of your health care but don't base your decision on my experience. I had several issues which complicated my treatment. Also, I still think that having this treatment was the right decision. Even knowing what I do now, I wouldn't go back and change my decision. My treatment was given in a very safe way and the risks were minimized. Unlike some of the more invasive treatments (Spinal Cord Stimulators), the side effects generally don't last long and can be easily managed. I didn't have the risks of surgery or spread of my RSD from the surgery.

All of that being said, I do hope this post is helpful in some way. I know that writing about this experience has been helpful for me emotionally.

One last shameless plug: If you're new to my blog or to RSDS/CRPS, please consider checking out my book. It's available in print or electronic download at
Nickie's Nook: Sharing the Journey
the book shares a lot of my story and experiences with RSD and I donate a portion of proceeds to chronic pain and Guide Dog organizations. The regular print and large print copies are available for $16.00 and the electronic (accessible) version is available for $9.00. It has many different chapters which don't have to be read in chronological order so it's great if you're riding the bus or have to wait in doctors' offices. I mention this because the book includes brief information on CRPS and its treatments. It might be helpful if you're curious.
Tags: anxiety, blindness, braille, chronic illness, chronic pain, health, humor, ketamine chronicles, nickie's nook the book, pain management journal, rsd sucks

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