Name: Courtney @killaacourt
Location: Harlem, NY
SS type: SS
1-What is life like living with sickle cell ?
For me, life with sickle cell is LIFE, it’s all i know. I’ve had good days and bad days, good years and bad years. Literally I’ve been on vacation living my best life and the following day I’m in the hospital. I’ve celebrated New Year’s Eve out with friends dancing, and counting down until the ball dropped to then be hospitalized less than 24hrs later. I’ve been home relaxing getting ready for bed to suddenly being in excruciating pain and on my way to the emergency room. It’s an unpredictable illness and I just try to live my best life the only way I know how to.
2-How has living with sickle cell affected your life ?
Sickle cell has affected my life because of how unpredictable this illness can be. I find myself hesitant to do certain things because I don’t want to end up in pain or in the hospital. I try and put my health first in the best way I know how to. Sickle cell has made me hesitant to travel internationally (what will medical treatment be like overseas if need be) it has made me hesitant about taking part in certain sports/ activities. I use to deal with pain alone because I was tired of explaining how I felt. I didn’t want to seem like a burden to the people around me and going to the emergency room would be a nightmare. I felt alone and like no one truly understood the pain I was experiencing especially when I was in the hospital every other month or so. I didn’t want to be labeled, and I didn’t want to be judged.
3-If u can describe what a crisis is or episode feels like how would you describe it ? What was your worst pain you ever felt ?
I’ve experienced mild crisis pain. To very extreme crisis pain. And for me it occurs in different parts of my body. As a child I had one major pain crisis with hospitalization in the fifth grade. All i knew was my stomach was hurting extremely bad I had a fever and could barely walk. Pain in my stomach from a crisis felt like the worst cramps you can ever experience almost like someone is standing on your stomach while is swelling at the same time. The worst crisis pain I’ve ever felt when my sickle cell complications made a return at age 20. I was finishing up college, and ended up being hospitalized about 14 days. I developed acute chest while hospitalized and was undergoing the worst pain I’ve ever experienced in life. It felt like every single bone in my body was being crushed, and I remember to this day screaming in pain to the nurses in the emergency room “HELP ME IM ABOUT TO DIE”. They gave me IV morphine which did absolutely nothing. After being admitted and still in excruciating pain I literally told my mom I can’t do this anymore with tears in my eyes ready to give up. I thought it was all over. Nothing was working until finally giving me IV dilaudid and warning my mom about how strong the drug was but it finally was some sign of relief. Almost 24hours later I finally wasn’t in pain anymore. From feeling like every bone in my body was being severed and drilled with a chainsaw to feeling like my self again. And from that day forward dilaudid is the pain management drug that works best for me.
4-Are you in a relationship? Why or why not ? Is sickle cell a factor in your relationship or do you even disclose that you have sickle cell?
When I was younger I didn’t tell anyone that I had sickle cell put my teachers and caregivers knew. I didn’t really get sick with hospitalizations until I turned 20. This is when I had to explain to my friends what was going on with me. Some understood it because of a family member or someone they knew and others said ohhh that’s what T-Boz has right. Even in relationships i didn’t tell them until I was sick and needed to be hospitalized. I used that as a way to open the door to speak about it. I didn’t want people to think “im sick” or feel bad for me so I wanted then to get to know me first. Being with someone and going through a crisis made me see the real in people. If you can’t support me at my worst then you don’t deserve me at my best.
I’m currently in a relationship and I cant really remember how I told him I had sickle cell because I haven’t even been sick or hospitalized for awhile since we been together but I know I told him early on and he knew exactly what it was. I think as i got older I’m more comfortable to tell people because I feel more confident speaking about it and how it affects people. I’m so glad that I told him early on and he understood it and accepted it because July 2018 i found out I was 8 weeks pregnant. It was the happiest scariest day of my life. I was scared not only because I was pregnant but because I have sickle cell and didn’t know what that meant for me and my health. I was considered high risk and thanks to my amazing hematologist and OB I had the smoothest, pain free pregnancy. I prayed EVERYDAY for my health and my baby girls health and by the grace of god and my support system I carried her full term with no complications/ loss of blood during childbirth and delivered a healthy full term baby naturally. She has sickle cell trait.
5-What is one obstacle you face and over come with dealing with sickle cell ? Ex finishing school , being a performer.
One obstacle i faced was finishing school when I became sick at 20 as mentioned earlier. I was finishing up my last credits when I was dropped from my class for attendance when I was hospitalized for over 2 weeks. Thankfully I had a professor that understood and allowed me to just make up the rest of the work and registered me for a summer class I didn’t have to attend he submitted my grade from the previous semester and I was able to receive my BA.
6-If you had the option to be cured from scd ? Would you want to be cured ? If yes or no ? Why or why not
If the option to be cured was guaranteed and not life threatening I feel like I would be cured. I would be cured because I would love to live life with no worries about being in pain or hospitalized. For now I’m not willing to take that risk. With faith I hope to live a long life for my daughter and follow what the doctors advise me to take to manage my symptoms so I can stay as asymptomatic as possible.
7- where can ppl find you at on social media ?
-Give me a phrase or a statement using #WhoKnew
Whoknew I’d be a MOM living my best life against what doctors believed.