SICKLE CELL IN MY OWN WORDS……
Sickle cell disease (anemia) is a blood disorder which is typically inherited by the carrier’s parents (each parent carrying a trait). With this, red blood cells are “C” shaped, or a crescent moon, compared to a full moon. These cells die quickly (10-20 days as compared to normal red blood cells which have a lifespan of 120 days). This leaves a shortage of healthy blood cells, which causes pain. The function of the red blood cells is to carry oxygen from the lungs to the rest of the body. With the abnormal shape of the red blood cells in Sickle Cell patients, one of the effects is shortness of breath. A well-known side effect is a sickle cell crisis which is an episode of pain which can last a few minutes or a few days. A crisis can be set off by things such as stress, extreme change in temperature, dehydration, and high altitudes. This disease can damage the spleen which causes the immune system to weaken putting sickle cell patients at higher risk for pneumonia and getting sick.
SICKLE CELL IN MY EXPERIENCES……
My experiences vary. Over the years, I have learned what triggers my sickle cell. Cold weather almost always causes me to have a crisis. These crises normally last less than an hour as long as warm up quickly. A crisis from dehydration lasts a few days and it hurts the most. This pain is more of an ache. With this, I feel pain everytime I move. If I can lay in bed, and stay still, it’s bearable. Then there are random ones which come suddenly with no cause. These are unpredictable. Mostly a throbbing pain straight to my lower back. Sometimes it’s on for a minute then off for a minute. With all of this said, I travel with my medicine just because I never know when I’ll need it.
With this condition, I visit my doctor often (not as often as I should because I haven’t had a really bad crisis in a while, but I still visit.) Being that sickle cell is a blood disorder, I have a hematologist who is a blood specialist or someone who studies blood. Every time I visit, I have my blood drawn and tested. The average hemoglobin level is 12-13 g/dL. A person with sickle cell averages a lower hemoglobin level of about 6-11 g/dL. Mine is normally 6-8 g/dL.
I feel other physical effects other than pain. The most common for me is probably cold hands and cold feet. My hands and feet are almost always cold. Not extremely cold but enough to notice. If I were to touch you, you’d be able to feel my cold hands even though it may be a warm day. My body gets cold as well but not as often or as cold as my hands. When this happens, I’m always sniffling because it causes a runny nose. In the winter, I keep my house warmer than most, almost humid.
Sickle Cell Anemia causes an iron deficiency, and with that comes fatigue and/or shortness of breath. I don’t have shortness of breath on a regular basis. I usually feel it when I perform physical activities, mainly running honestly. I can do almost everything regularly while performing, but I almost always take a lot longer to recover from exerting that energy than the average person. The recovery process may include a headache and nausea, and that can also lead to the chills. There have been a few occasions where I couldn’t physically stand. I’ve collapsed to my knees but never actually blacked out. The fatigue doesn’t always come from physical activities. With sickle cell, your body reacts in so many different ways. Some days when I wake up, my body just feels heavy and it takes twice as much energy just to get out of bed. Some days I can literally walk around in pain all day and no one will know. This makes the day tougher but I try my best to get through the day as best as I could. When in pain, I always hide it just because I don’t want to ruin someone else’s day and I also don’t want anyone feeling sorry for me. There are sometimes when I just can’t hide it and you may ask what’s wrong and I’ll say I’m just tired today or I’ll downplay the entire situation.
Let me describe a sickle cell crisis (Lower back pain). A crisis can be random, or you can trigger it yourself. If you are reading this and you have sickle cell, learn your body. Learn what triggers a crisis. So for me, when I have a crisis rather it’s random or triggered, I always stop what I’m doing. I try to relax because if my anxiety shoots up, that's going to make it worse. Most times I lay down hoping it’ll be a false alarm. I NEVER take medication right away. I give it about 10 mins for the pain to die down or I wait to see if the pain gets worse. If the pain gets worse then I begin to walk around. I try to walk in circles or up and down stairs. A crisis occurs when red blood cells stick together and deny vessels, which carries blood throughout the body, the ability to flow correctly. So my thought process is to always move around to get the blood flowing. This is not scientifically proven but it works for me. If the pain continues to get worse, then I start to take medication hoping to slow it down. If the pain continues to get worse, I normally try to lay down. I’m almost forced to lay down because the pain is unbearable. I'm laying down but I'm tossing and turning, thinking about if I should go to the hospital or not. So if I happen to go to the hospital, I have to wait in the emergency room, IN PAIN. The wait there is always a few hours which is why I now choose not to go. But the last time I went, I waited for hours then a doctor asked me to rate my pain 1-10, 10 being unbearable. If it was anything less than a 10, I would not be here. So then the doctor only gives you a bed and some pills. Then you stay in the hospital for a few hours, then the doctor comes back and asks “how are you feeling”. If the pain is still there they look to give you a needle filled with morphine. I had some sort of reaction to it. My arm felt like it was on fire. It was a slow injection. The doctor or nurse maybe got half of the medication in before I made them take the needle out. Afterwards I felt so drowsy and drained. I’m not sure if it was the medication or pain (or both) that made me feel this way but one thing I did know was I’ll never take morphine again. Normally before they release me, they take blood so see where my hemoglobin levels are and diagnose what caused this specific crisis. This was caused by dehydration which is why I know what dehydration feels like when it comes to a crisis.
My last hospital admittance was August 2015. I began working out in February 2015. My theory is that this exercise is keeping me out of the hospital and keeping my pain to a minimum. Prior to working out I would be admitted to the hospital at least once per year, a few occasions, multiple times per year. I still get minor pain episodes but I have not had a crisis where I feel as if the hospital is my only option in 5 years (knock on wood). I know what triggers a crisis and I try my best to avoid those things. Which is partly why I don’t drink alcohol. Alcohol can cause dehydration because it removes fluids from your body at a quicker pace than other liquids. If I drink alcohol when I haven’t properly hydrated prior, that's a recipe for disaster.
I have plenty more to tell, but I don't want to make this too long. If this gets good feedback, I’ll share more of my experiences. I’m hoping to help sickle cell patients manage their condition better with my experiences. If you know anyone who would enjoy this article, please share this. If you have sickle cell and have any questions, please don’t be afraid to reach out. Email me showtimeskootndnf@gmail.com or direct message me on instagram @showtimeskoot
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