I realized it has been exactly 2 years since my diagnose. Everyday it is more and more difficult. The pain has gotten to a level I could never have imagined. I hate when I am having a good day and all of a sudden the pain strikes me cripple in a second. I have been taken to the hospital because I just can't take the pain. I am blessed to have a family that tries to understand what I am feeling and going through, but to tell you the truth I can't even understand all these changes myself.
I told my husband once, "I can imagine how hard it must be to live with me but can you imagine how hard it is to live with myself."
I am tired of everyone trying to compare their pain to mine when it is absolutely not the same thing - not the same illness not even close. I am tired of people treating me like an idiot or an insignificant person just because I am ill. And I don't like the comment, "Awww," every time I say I don't feel well. I don't need pity from anyone. I might need help but no pity.
I am taking pain medication (which at times is a waste of time) and there are people that say I am loopy. Really how dare you... you have no clue no clue what-so-ever how I feel. I am not loopy!!!
Lately I have been really dizzy and feeling light-headed. I am afraid of fainting so I fight it but it takes over and I just prefer to sleep a lot. When I go outside and the sun hits for a long time, I get a bad reaction on my skin. When I go to the doctor again, I will have to let her know.
I feel bad that I am not working and making money to help my husband. He is so tired and has back pains. He does not have an easy job, but he stays there because the health insurance is great for me. It has been exactly 1 year and 10 months that I had to stop working because of the way I was feeling and the things that my boss witnessed while I was working at his office. We had to let go of the awesome home we lived in because of the money situation.
I masquerade everything with a smile, big hair and colorful long nails. Quick talk and when it is too much like today I hide for days, sometimes for weeks.