CRPS/RSD is an awful disease that affects the entire nervous system. It's so underdiagnosed and usually takes years for a Doctor to make the diagnosis. It's a disease that causes so much pain and requires an entire lifestyle change. There is hope but not a cure. It requires a lifelong battle but you must keep fighting! I will keep up the fight..the disease will not win! I now have a great Doctor and in good hands. I have faith that this treatment will work!

Thursday, August 13, 2009

Frustrated

I haven't had much time lately to sit and post. I have so much going on right now and I can't think straight. I have had a week of bad news and lots to deal with. I went through my last test on Tuesday for Ketamine clearance and it was HORRIBLE! I never EVER want to do that again! My daughter went with me and I was so glad she did. She sat with me when the Dr explained the test and then when it was over they called her back to the room. I was so pale and sick. It was called a "tilt table test". They strapped me to a table and I layed flat for a while then was moved to a standing position while strapped in. They monitor blood pressure and heart rate. Half way through the test I was given nitroglycerin. ACK! That was what made the test horrible! OMG! I will admit that I cried and begged for them to stop. I was told "only 6 more minutes". That was a LONG 6 minutes! I am cleared for Ketamine treatments but I do not know when they will start. I spoke to my Dr on Monday and he told me that my RSD is pretty bad and they are very concerned. My optic nerves have been affected and I have optic nerve damage. Once this occurs, it is not reversible or able to be repaired. I have a huge amount of color loss as well in the right eye. I was tested and I only got 2 out of 8 correct on the color vision test. So far it seems to be in relation to the TOS & RSD. I will need further testing to see if they can stop this somehow. It's a huge concern and I am very upset and worried. I haven't really absorbed everything I don't think..it's just so much to have to go through. I am under alot of stress right now also which does not help. I am trying to relax as much as I can but it's not easy. I took my daughter and her friend to the mall yesterday which was alot of fun. We had a great day (except for having a flat tire which started the day) UGG! Then I had planned a surprise birthday party for my daughter last night which went very well and she was VERY surprised. She had no clue about any of it. It made for even a better day! I was so glad to see her happy. We had a great evening except I was very tired and all the noise from everyone talking and so much going on kinda stirred everything up for me and I was in lots of pain by the end of the night. It was worth it though!