Hi everyone, I am Nikki I am new to this. I have hgb SS. I am a 36 year old female. Ihave had 4 strokes, and I have CHF and have compression fractures in my back. I live in the Washington DC metro area. I have a college degree and worked full time for about 9 years. I started my own business. I still work when I am able to but I have been getting sick alot lately. I hide my pain from my family because I hate hearing them tell me that ohhh its only in your head. I am soo tired of them telling me that I only take pain meds to get high. I have an excellent doctor that has a sickle cell clinic in his office. He has an excellent staff. He has an infusion program where we can go and get pain treatment and fluids. We get our labs checked and our scripts. At the office everyone there is just like me. They understand my pain, frustrations, and fears. But then I come home to hell. I don't understand what it means to be without pain. That is a concept that I cannot comprehend. What is " NO PAIN" I wake up in pain, go through the day in pain and then to top it all off go to bed in pain to try and get 2 or 3 hours of sleep just to start the cycle over again. No one in my family had this terrible disase. I am sooo happy of that. I wouldn't want anyone to understand the pain that I go through on a daily basis. Although I don't want them to understand this pain i wish that they can feel my pain on my best day. My best day is when I can take my oral pain meds and I get 3 hours of sleep. Maybe then they wont be so quick to tell me that I am a drug addict when I go to a Drs. office to get help with unbearable pain. The only positive thing about this disease is that I have met some of my dearest friends who also go through this hell. The most important thing that I learned is that I know for sure that if I did not have this stupid, dumb, painful disease I would not be who I am and done the things that I have done and most importantly know GOD the way that I do.