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!

Monday, August 10, 2009

Wanting to Cry Today

I only have a minute to post. I just had an emotional breakdown this morning. I didn't sleep well last night. We went to a movie as a family yesterday and the previews were so loud that it set off my nervous system in a horrible way. I had a huge attack and started crying. I went to the bathroom and just cried. I was freaking out. It took me a while to regain composure. I was having a tough time getting myself back to the theater. I did it. My husband told me to go get toilet paper and put it in my ears. I did that and it helped. Problem was that my nerves were already pissed off. Last night I couldn't even stand being touched. It was so painful if my husband just touched a toe on either foot or any other part of my body. I was so irritable all night and this morning I felt sick. Severe headache and my entire system is screwed up. I took a shower and cried. I got out of the shower and the AC was on. OMG that did not help! I ran to the bedroom to get away from cold air. I am under some stress right now which is not helping. I am battling lots of things at the moment and this is going to be a very difficult week for me. It's very hot and humid today and I have a cardiology appt tomorrow that is on my mind. I'm just a mess at the moment but I'm staying touch.

Friday, August 7, 2009

Stressful Day

I am finally sitting at the computer for a minute. I have had a busy day on the phone and I'm so tired and in so much pain right now. My medicine isn't helping one bit. I've been on the phone most of the day today dealing with all sorts of things. I have a severe headache and my entire body aches. I have stabbing pain in my neck and when I move it hurts more. My right hand is killing me. I tried to pick up a piece of clothing and couldn't even hold on to it. I couldn't grasp it so I dropped it. I haven't ate well today because the pain is so bad that I don't have an appetite. I am on fire and I feel like crying. I am awaiting my husband and daughter to arrive home shortly and we are then going to subway to get dinner. I'm looking forward to seeing them shortly. My son just helped clean the bathroom and other parts of the house. I'm very proud of him! No complaints..except for how dirty it was lol. He did an amazing job...He's HIRED! That's all for now.

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.