[Guest Post] From Pain to Purpose: My Battle With Sickle Cell Anemia
By:     -   March 22, 2017   -   From Pain to Purpose  -  Guest Feature  -  Health & Wellness   -   Comments are closed   -   1011 Views
Sickle-cell Disease

Editor’s Note: Many thanks to our guest blogger, Monique, for graciously agreeing to share her story with us all. I was truly touched upon reading it and now have a better understanding of what those diagnosed with Sickle Cell go through on an ongoing basis. The details are just heartbreaking and I pray that your testimony encourages someone. I am in awe of your strength and will to let everyone know that Sickle Cell disorder does matter!

“God birthed purpose through my pain, and I look nothing like what I’ve been through!” – Mo’Nique

http://www.sicklecelldisease.org

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Here is her story:

What if I told you that since the age of 12 until my current age of 34 that every day I live my life in pain? Could you imagine waking up and going to bed knowing that no matter what you will always be in pain? Well, that is my story. At the age of 3 I was diagnosed with Sickle Cell Anemia (Hemoglobin SS) which is the worst form of Sickle Cell Disease to inherit. I remember the painful episodes that would come over my body which always seemed to happen at night while I was asleep. At least to my recollection it seemed this disease was drawn to interrupting my sleep. I recall the countless times I was awaken by sharp bolts of pains through my joints and back. One minute I am sleeping peacefully and the next I am screaming for my mother to come rescue me from this torment. I don’t know the exact age when I started having pain episodes but I know of the many hospital stays during my elementary school days.

School was hard for me growing up. Back in the 80’s and 90″s if you mentioned the words “disease and blood” in the same sentence you were automatically put in the AIDS category and became contagious. Although SIckle Cell Anemia is a hereditary disease, trying to explain that to elementary and middle school kids was almost impossible. There were times where kids would not drink from the water fountain after I drank because they didn’t want my disease. This is the very reason I stopped calling it a disease and began saying a blood disorder or blood condition that you can only be born with. Due to the jaundice (yellowing) of my eyes many children would stop me in the halls and grab other children and even teachers just to look at my eyes and ask me what was wrong with me? This could be very annoying at times because I felt like a side freak show when all I wanted to be was normal but I would never be normal like the other children. I was very different. I couldn’t spend long hours in the pool, play in the rain, or even enjoy a snowy day. These are things that would cause a full blown pain episode which would lead to nights in a hospital. Whenever I tried to be like everyone else it always reminded me in painful ways that I was nothing like them.
I was never expected to live past my teens. The life expectancy of a person with this disease was not great at all. They did not have the knowledge or treatment they have for Sickle Cell today. Although we have made much progress in medical advancements we are still behind when it comes to awareness and treatment for the many things that come along with having this chronic illness. In middle school I developed gallbladder disease and avascular necrosis, which are two complications that almost all patients with Sickle Cell will deal with at some point. I had my gallbladder removed after graduating high school. However, I never went forth with the hip replacement that doctors told me I needed as a child. The avascular necrosis in my left hip is the source of my daily pain. It is nowhere near as bad as it was as a child but I still have days where the pain can be unbearable to the point of not being able to walk. I have but placed on many restrictions to avoid further damage that would lead to a mandatory surgery. Recently, I found out my other hip has become infected but I have yet to experience any pain there yet.
Growing up, I was encouraged not to have any children. That it would be a death sentence, and why have children if my life expectancy wasn’t going to be that long for me to watch them grow up? I call moments like these “But God” moments. I lived past my teens, I didn’t need the hip surgery they said I would need in order to walk, and despite having the worse form of Sickle Cell I live a pretty healthy life by having great doctors, a wonderful support system, and a diet that helps keep my Sickle Cell under control without having to take all the toxic medications to maintain my health on a daily basis. I had my first child and did have many complications throughout my pregnancy. My daughter was my miracle baby. Throughout all I went through during pregnancy and having to be induced 5 weeks early, she came out in great health. Due to the amount of blood loss, I did have a close call with my life but the angels were with me.
About a year or so after the birth of my first child, I became extremely ill. I could no longer walk, shower, or use the bathroom by myself. It took me a week before I allowed my mother to take me to the hospital. My doctor could not understand why I waited so long? Well, hospitals are not your best friend if you are a Sickle Cell patient. I have had years of bad experiences with nurses, hospital doctors, and quite frankly it is always a last resort to go to a hospital. I was literally on my death bed before I went and all my organs had begun shutting down. I had to have a blood transfusion and for the first time I was hooked up to more machines than I could imagine. I just wanted to die in that moment. I wanted God to take me from that pain and bring me home with Him. I didn’t want this life. I didn’t ask for this life. Why was God punishing me? Obviously, God spared my life for a bigger purpose.
A few years later I gave birth to my son. Only to find out 6 weeks later that he too had the same disease as I. I wanted to know why would God do this to me? Why would he do this to my son? More importantly, I wanted to know how this happened? His dad told me he was tested in the military and did not have the trait, so they had to be wrong. I made them test him again. They were right, he had the same disease and me. I could not wrap my mind around it. I had enough knowledge to know that I would not dare knowingly put myself in a position to bring a child into this world with this disease. I knew that all the children I would have would carry only the trait if I was with someone who did not carry the trait or disease. Them carrying the trait gave it a 50% chance of the disease and that risk was too high for me. Well, his dad was wrong and he did have the trait. My son started having pain episodes right before his 3rd birthday. That first episode of pain had me in a fetal position with tears crying out to God to remove his pain. He was too little for this. He didn’t deserve this life. I wanted to carry his pain for him. I could handle it. I had more experience. Nonetheless, he had to become his own warrior just as I did. He is 11 now and although he has his bad days or weeks, because I too have the illness, I have inside knowledge on how to help him.
In some way, I have comfort in knowing that I know exactly what my son is feeling. I know what to do to keep him healthy.  And I know how to talk to his healthcare professionals on his treatment plan because I have first hand experience on that pain. Battling this disease is not easy. Many times we get sick back to back or I become sick from trying to take care of him. If it wasn’t for my relationship with God, a good support system, and an amazing therapist I couldn’t manage it all. Especially, in the cases where we both become ill at the same time. How can I help him when I can’t get out of bed myself? No mother wants to feel helpless when their child is hurting. I know what that hurt feels like all too well. It breaks my heart every time. For my daughter, this is a struggle because she lives with the fear of one day me not being here or even her little brother. That is a lot of weight to put on a teenager. She attempts to play our nurse the best she can but that is not a job for her to hold.

This life I live is not an easy one but I learned that complaining solves nothing. So, I smile through the pain and I use my life as a testimony. No matter what you are going through there will always be purpose for your pain. You just have to learn how to properly make your pain purposeful. I am not strong because I chose to be. I am strong because it is the only choice I have. I am fearless in this fight because my God is faithful to me in the midst of it all. I do not take a day of life for granted. I never know what day will be my last. The words “tomorrow is not promised” is a reality I face with my son from minute to minute, hour to hour, and day by day. I will continue to tell my story. It brings the much needed awareness that is needed. I want to remove the stigma that this is a “black persons” disease when it affects ALL races. This illness has nothing to do with race and everything to do with genetics. Maybe then we will get as much attention as Cancer, Heart Disease, Parkinson’s Disease, etc. I just want the world to know that Sickle Cell matters too! Many children and adults are losing their lives to this disease and we deserve a cure and to be treated fairly by healthcare professionals. Until they understand our pain, they will continue to judge what cannot be understood without walking in our shoes.

 

 


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