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!

Saturday, August 15, 2009

Feeling Down

It's Saturday and what a week I just had. I am so exhausted mentally and physically. My mind and body just is ready to shut down completely. Right now I feel like crying so I thought I would try and post to get my mind off things. Today I am having trouble with feeling things correctly. I was told that my shower was extremely hot but it just felt warm to me. I am having trouble with eating and drinking today because I can't taste things right at all. Everything tastes either too sweet or blah. I have been going crazy trying to find something to drink. I haven't stepped outside all day because it's too hot and humid. I can't tolerate the humidity. I can tell as the humidity rose and the temperature went up, that just being inside made a difference in my pain level. My pain level finally went down this morning but now it's back up and I'm very uncomfortable. My headache is severe and I can't see too well. I am having trouble thinking and concentrating. My daughter has had a long week as well and we are all tired. I want to cry but yet I don't. I have such a mixed bag of emotions with all of this. I completed the 24 hour holtor monitor so I am finally finished with the appt's for ketamine clearance. I still need to follw up with the neuro opthamologist at some point to see what's going on with the optic nerves. I just can't go through the tests that they want to do because it stirs everthing up and I get in this huge flare. The Dr told me that the tests can wait at the moment but they need to be done. The heat and humidity flares RSD badly and we are trying to get it to calm down. The Dr told me that I need to stay in a cool environment and regulated. Temperature changes are extremely bad and make things worse. So the eye Dr is on hold for more testing at the moment but they do need to be done. I'm also afraid of how bad the outcome will be. I noticed this morning that I can barely see out of my right eye. Everything was a blur and I couldn't make out what was on the television. I hate having this..I hate all of it! I'm just so darn frustrated because there is no cure and I have to live with it. I am doing my best and I will have my ups and downs. Today is a down..it comes and goes. I'm hanging in there though and you know me..I will never quit or give up! I'm off to help with dinner.