Today is a little harder than most. I woke up and cried. I’m still trying to figure this out. I may never and that’s so hard for me to understand. I’m the type of person who always needs to know “why” and with this I may never know “why”. I am really lucky to have such amazing family and supporters, but even then I feel like I’m doing this alone. I know I’m not, but this is my body and I’m going through the pain. I don’t want anyone to feel bad for me at all! This is just something I’m going to have to accept and live with. Some days are really good though and those are the days I need to move forward with. 

I have been a hairstylist for 6 years. About 4 years ago I started having problems with my hands. My fingers wouldn’t close all the way to a fist and they hurt. My wrist were always swollen and you couldn’t see my knuckles or veins. The chiropractor I was seeing at the time told me I had carpel tunnel. I believed and would get my arms worked with acupressure 3x a week to help my hands. It helped but they were always swollen. I didn't believe in getting the surgery and I am so glad I didn't.

In the hospital, about the second week in, I noticed my hands, and they freaked me out because my fingers were so skinny! I can see every vein and my knuckles. My hands weren’t white or puffy, but they looked so weird to me! When my mom came to visit I pointed it out to her and she told me “this is what my hands are supposed to look like.” I couldn’t believe her because they freaked me out so much! It’s been 4 years since my hands and fingers have looked normal. That’s when I realized I’ve had this disease slowly take over my body and not ever realizing that I didn’t have carpel tunnel. I got to a point where I couldn’t open a water bottle because my fingers hurt so bad. I now have learned that I have no muscle in my hands and fingers. Slowly I will regain that muscle, but it might take a little longer than the rest of my body considering it was 4 years ago that this started. I adjusted my lifestyle to my hands and never expressed how much they actually hurt me or how difficult it was to open a water bottle. I know now that I need to speak up when something hurts or doesn’t feel right.