Hello my wonderful warriors. It’s time for a heart 2 heart.
When I was a child, I knew nothing about sickle cell. The only thing I knew about it was what my mom had told me from what the doctors had told her. It wasn’t until my teen years that I started reading about sickle cell on my own. Even then, whenever I fell sick, I turned into a younger version of myself, needing my mom at the bedside 24/7.
It wasn’t until I went off to college that I had to take a level of responsibility for my disease. Even then, I still was not eating right, or following the basic principles of sickle cell. I still relied heavily on what my doctors told me to do and did no research of my own. I lived from one crises to another, with daily pain and relied heavily on narcotics.
My turning point occurred in 2001. I was living on my own 800 miles from home, and had gone into sickle cell crises. I went to the hospital, and my crises was so bad that I ended up admitted. I knew that Morphine reduced my respirations, and yet, when the nurse came with a PCA of Morphine, I said nothing. I was in alot of pain, and just wanted it to be over. The nurse had set the Morphine PCA to have a ‘maintenance dose’, which means that every hour, regardless of what my state was, I would get 5 mg of Morphine. I felt myself getting tired and sleepy, and still, I said nothing.
In the middle of the night, I became unresponsive, not breathing, and had to be rushed to the ICU. Fortunately, they were able to give me Narcan to reverse the effects of the Morphine, but my health took a downturn that admission and I almost died. That was my turning point.
See in that situation, I could blame the hospital, doctors and nurses. But the expert in the room was me. I had sickle cell for 21 years at that point, and I knew my body. I knew that Morphine would reduce my breathing, but I said nothing to the nurse or anyone. I didn’t empower myself with my voice, and I almost died.
Last year, a sickle cell warrior died because of iron overload. She knew that her iron was high, and that at a Hemoglobin count of 7 she could manage without the transfusion, but she accepted the blood transfusion anyway.
Last month, my friend was in the hospital in crises, having pains in his leg and knee. The doctors wanted to do a biopsy of his knee. He knew that the pain was related to his sickle cell, and not anything was wrong with his knee but he said nothing. They did the biopsy, and his knee became infected at the aspiration point. He was hospitalized for an additional week because of that infection.
Are you beginning to see a pattern here?
Please be a self empowered advocate. I know that you are in pain, when you go to the hospital, but that is not an excuse to keep silent. Silence kills! Noone knows your body more than you do, and you do not have to accept every single drug and treatment that they try to foist on you in the hospital. I’m not saying be cantankerous and noncompliant, but I am telling you to ask questions, make sure you understand the full picture, do your research, and do not just do something because that is what the doctors are telling you to do.
My doctor never told me about the diet modifications that I can make to prevent crises. My doctor never told me about Nicosan, an herbal remedy that has kept me crises and pain free for over 2 years. My doctor never told me about the energy boost that I can get from Arginine. My doctor never told me that Melatonin can help with insomnia or that Fish oil can help with depression.
Do you see the pattern here? All the improvements to my health and condition have been because I researched it, empowered myself and found out what works for my body. The docs are following a template in treating you, and they are not personally invested in your outcome. THIS IS YOUR LIFE! It is not your mom’s, your spouse’s or your doctors. This is your life, and you have to take ownership of it.
God has gifted you with a brilliant mind. Technology has given us Google. There is no excuse for not researching every single little thing you need to about sickle cell. Stop being a victim of the medical system. Stop relying on your parents or family to help you manage your condition. There is no excuse for ignorance–not in this day and age. So please, I beg you, for the sake of your own life, take ownership and become self-empowered. Become your own advocate, speak up, and take care of yourself!