One thing that my good friends and family know about me is that I am amazingly stubborn. I like to think that this is a particularly amazing characteristic that I have which has enabled me to remain motivated and tackle obstacles against all odds. And those odds are definitely stacked against me. I am currently 24 weeks pregnant with my second child 😨 I know what you’re thinking. Didn’t I learn my lesson the first time? The short answer is yes...and no. So maybe there is no short answer. But I do know that individuals with sickle cell disease and other chronic illnesses have the same human urges to procreate. I'm not saying everyone desires to be a parent, but generally, we have similar wants, needs, goals and dreams as healthy people. I've accomplished a lot in my short time on this Earth and I am so proud of me for hanging in there through some tough situations. But maybe you don't know about those? Okay, I'll tell you. I wasn't diagnosed with Sickle Cell D...
Dear Providers, You may not know this about me, but I am a fighter. This means I am going to fight you, tooth and nail, for you to do what's best for me as a patient. I am going to challenge you to see me as HUMAN first. I wear many hats. I am a mom , wife , sister , an aunt , a niece , a daughter , a granddaughter , a cousin , a friend , a confidant , and an advocate. I have qualities you may not be aware of yet. I'm educated, passionate, devoted, outspoken, charismatic, funny, sarcastic and sassy. I just happen to have Sickle Cell Disease. But I spend a lot of my time being emotional and fearful that the first thing you see when I walk into your place of work, is a combination of my skin color and my disease. You make judgements about why I am there. You question if I am truly in pain. You may even accuse me of drug seeking. I will go along with all of your tests designed to rule out imminent death, and will ride along as you do the minimum allowed to void yourse...
It dawned on me that many of you who are not close friends have no idea why I'd be in pain or learning to crochet ;) Well it's because I have Sickle C disease, a "mild" form of Sickle Cell Disease. I say mild because at the moment, I'm sure my pain could match someone with full blown sickle cell anemia. Take a look at some personal anecdotes from people with the disease as written for the New York Times. Pain, Persistence, Family - Sickle Cell Disease SCD is such a complex disease that it has been called invisible due to the pain that is internal and that varies from person to person. No one can readily see the affects of this disease and have no idea how to relate to you while having a pain crisis. Why is there pain? Because individuals with Sickle Cell Anemia, Sickle C Disease and Sickle B disease have abnormally shaped hemoglobin, or blood, which can often get stuck in the veins which can cause pain in several different areas of the body. Blood cells can also...
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