Fybro Fight...

Last Friday I got my 2nd denial from Social security for disability benefits, while some might see it as discouraging I see it as encouraging because I was expecting 3 before I get benefits. This time they said that they can see that it has effected what I can do, I might not be able to do what I could before but I should be able to work some at lease.. HAHA! I emailed my lawyer from my bed as I have been here for the last 10 days now with the heating pad and the bed as the only relief I seem to get from hip/leg pain (and major sound/light sensitivity issues, so I can keep it darker and quieter)
I told my lawyer that if they (SS) could find me a job that I could do and paid enough to keep the basic bills paid I would gladly take it but even the state office the does food stamps did not want to try, they wanted a letter from my Dr to use as an exemption for me from the able bodied adults job program that you are required to participate in if you are on food stamps or financial assistance.
I have found several great groups on Facebook that are for Fybro and am learning that many of my odd little things many of us have, things that I thought were just me for years, even if the fatigue, over all pain, and IBS issues only set in a year ago. I have had little things for years back to my teens for sure and I think vary early on, but I was lucky enough to be healthy and my body did not let the worst come to the top until my surgery a year ago July, it built from July until Oct when it hit like a ton of bricks.
I read a story where a person explained being sick with lupus to someone with spoons (look up spoon theory, or check out my Facebook I linked it there) and I think while sad, it is soo true. I have to decide if I have the energy to do all I want to in a day and if I do all I want will it effect tomorrow's energy lvl?
Hubby had his monthly Dr visit today and then we had a little shopping to do and by the end of it we had been out 8 hours and I am spent. but I have things that I have to do tomorrow and Sat, then Mon,Tue and Wed next week.... so I will rest when I can and hope for good sleep (another nasty issue, trouble sleeping due to pain or other little things like temperature regulation, or random little noises)
I might be sick and not look it when people see me, but I learned to hide the pain a long time ago. People do not like to see others in pain so I hide it a lot when I am out and about. But I am not the person I was before and I WISH I was, I would love to work, rather then be home all the time. People think that being home all day is fun... they are wrong!!! Imagine having a nasty cold and being stuck in bed. well that is what it is like most of the time. just different symptoms and reasons, but not being able to do what you want and need to do cause the body says NO! not being able to go out and see friends or go to parties (huge energy drain, not even worth it 99% of the time)...
I hope to feel better, but will do the best I can each day with what I have that day :)