“I am an advocate. I’ve always been an advocate, but I’ve been strongly advocating, I started the foundation Sickle Cell Support Group for Anderson County and Surrounding Areas. We actually got that up and moving in 2016, and we did our first walk in Palestine, Texas and held our first health conference.
Over the past year, I have not really been advocating because I suffered the loss of my baby sister, who also suffered from Sickle Cell Hemoglobin SC. We lost her in 2018 on May 4th to the disease. And so I kind of took a break through that time period. I recently just started back and I made a commitment in the month of September to start advocating again, to get myself back moving and in the groove, to get my own organization back up and functioning.When I advocate, one of the things I push is knowing your body, and know they say that we’re limited on how much exercise we can do, but some exercise and eating the right foods, foods that especially help for autoimmune and blood diseases and keeping hydrated, they do work. It’s important because the exercise that you get, it fuels the the blood. it helps with the joints.
Unlike me, [my sister] didn’t suffer from crisis as much as I did as a child. Hers began to affect her more in her younger adolescence. And it became a struggle for her. The last year of her life, she pushed, she was on a walker. She didn’t have a hip, it was gone. And she was waiting for surgery, and they were denying her because of her weight. And she pushed herself. And through pushing herself to get a little bit of exercise, it gave her more strength back in that hip than what she had in the beginning.
When I notice, I’m a do-er. So when I start to feel fatigue, one of the signs I’ve learned, my crisis always starts in my hands. So when I feel the ache of my hands, I start pumping fluids. I slow down. I started getting me a little bit more rest, because I don’t get a lot of rest. It’s a bad thing, but I don’t.
Things that you notice that occur when you begin to have a crisis, just start to take head of that. And start to recognize it and pace yourself. And then begin to do things that are good for you. You can never go wrong with the fluids, because that’s what sends us to the hospital is the dehydration. So making sure that you start pumping the fluids and getting rest, that is the very first thing to getting on top of a crisis. And then I always say, “Don’t suffer in silence.” If it gets too bad, don’t let it get out of control, go to the hospital. And I know we avoid it because the way they treat us. Be your own voice, stand for yourself and fight and advocate for yourself while you’re there in that facility.
Don’t settle. But the first thing is, stay on top of you, so that when you get to a facility, you don’t have to settle. You don’t want to get to a place where you need them to be on top and they’re not on top. But never be afraid to speak up.”
–Anedra, SCD Warrior