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 6, 2009

Tired and Stressed out

I've been having a rough day. I've been trying to ignore the pain but it's hard. My shower today set things off pretty bad. It felt like I was being stung by a million bees the entire time. I was freaking out! My headaches are unbearable and they have been this way all week. I have trouble remembering if I took my medicine so I'm getting frustrated. I have to set an alarm now for reminders. My memory is not what it used to be and I've been noticing that I am even reversing my words when I speak and also writing numbers and letters backwards. I also write things completely wrong at times. I get very upset with myself when this happens. The RSD involves the brain. My brain doesn't process anything correctly. My brain first of all processes everything as PAIN. The pain takes over and then nothing else works right. My memory, concentration and ability to focus on things have been greatly affected. I can't sit in one place for very long and driving is getting more difficult. I don't do well with anything that takes concentration, focusing, thinking, etc. I also am having a hard time with lights and the sun. It bothers me so bad. If you've ever had your eyes dialated at the eye doctor and walked out of a sunny day without sunglasses...well..you would know how I feel. That is how I feel every day when I walk outside. I tend to not turn on lights in the house as well because it bothers me, especially the bathroom lights. My eyes don't work right either and I have trouble focussing. It seems that my optic nerves are being affected now and if damage is done, it is not reversible. I have 3 pairs of glasses and I change them throughout the day. My vision changes by the hour. It's the craziest thing. I try to make light of it but it's not easy. I hate not being able to read anything and asking everyone for help. It's tough. I have had to learn to ask for help now for lots of things. I give my kids so much credit also..they have been WONDERFUL! They have been very understanding and helpful. They are usually around to lend a hand and they even yell at me if I don't ask for help. My husband is the same way..so helpful and supportive. I try not to complain about how I feel and how much pain I'm in. I can't hide it though and they know it. They are there for me and I don't know what I'd do without them. I've had a stressful day today and I'm now tired and going to call it a night. This is my time to go lay on the floor and meditate some and just try to think of absolutely nothing! Then I'm going to watch "So You Think You Can Dance" and pop some popcorn. I'm too tired to think at this point and I'm kind of bummed because it was a beautiful day outside for the first time in a while and I spent it in the house. I miss riding my bike and other outdoor activities..it's so hard to cope sometimes knowing I can't do these things anymore.