Sickle Cell Warrior of July: Dezii

Hey everyone!

For so long I wanted to tell my story with sickle cell disease. But my story is and never will be the same than another person and I want other sickle cell warriors to talk about their experiences, I wanted them to have a voice. So, I reached to some friends, acquaintances and even some complete strangers to ask them if they wanted to tell their own story. Luckily I found people that were on board to be interviewed by a total stranger, and tell their story. If I continue to find people I may do this every week (so come forward my precious), but for now this will be a monthly post.

For the VERY first “Sickle Cell Warrior of the Month”, I’ve had the pleasure to meet Dezii and this is her story.

Jo = J
Dezii = D

J : Welcome! Can you tell my lovely audience your name, age and where do you live.
D : Hey, my name is Dezii, I’m 26 years old and I live in Cincinnati, Ohio.

J : My first question is, have you always know you had sickle cell disease ?
D : Yes! My mother found out when I was about a month old, I was actually misdiagnosed when I was 2 weeks old, but they finally discovered what I had.

J : What type of sickle cell did they diagnose you with? SS; SC or AS ?
D : I am diagnosed with Sickle Cell SS

J : As this is a genetic disease, are you the only one in your family with Sickle Cell or do you have other family members with this disease?
D : I’m the only lucky one in my family to have it :S

J : Can relate. How does sickle ell disease affect your social life ? Do your friends and family understand it?
D : To be honest, when I was younger, my mom did everything she could for it not to affect my social life. So growing up I tried doing the same thing. But I’m grateful that my family and friends understand when I’m having a “bad day”.

J : If you do work, what kind of job do you do and has it always been what you wanted to be or did your disease put barriers on your dream job ?
D : I used to work, I was a server. That was definitely not my dream job, but the thought of going back to school stresses me out and gives me anxiety which often turns into a pain crises.

J : So when you did work, did you disclose that you were sick or did you try to hide it ?
D : No I never hid my illness when I worked, I feel like it’s a part of me, so why hide something I have to live with anyway.

J : Let’s talk about crises for a bit. What was the worst crisis you’ve ever experienced?
D : My worst crisis was when I was about 10 years old, I had pain all over my body and I immediately got admitted into the hospital for 2 weeks. I had to let the doctors and God do their magic at the time.

J : Talking about the hospital staff. What do you think about nurses and sometimes even doctors not knowing what sickle disease is? They learn about it very lightly in school except they do a specialization on blood diseases.
D : I think it’s CRAZY and definitely should be taught and learned. There’s so many of us that have SS or SC living it every single day, doctors and nurses not getting or understanding how to treat us is absurd!

J : So you obviously think there should be a change in how the medical staff takes care of us.
D : Absolutely!! More than 90% of the time we are looked at as drug addicts or drug seekers, that’s not fair.

J : What would you like people who don’t know what sickle cell disease know?
D : I would like people to know that this is real! This isn’t fake, we’re literally waking up everyday fighting with our own body, praying one of the theses days we will be pain free!

J : And lastly, what would you like to say to any person with person with sickle cell disease who may feel alone and discouraged?
D : To the person with sickle cell who may feel alone and discouraged hear me when I say, I get it and I understand. I would be lying if I said it gets better but it definitely gets easier!

I want to thank Dezii, for being my very first guest and also she didn’t mind that she was the very first person I interviewed! If you want to reach out to Dezii, you can contact her on Facebook at Dezrion Camille.

Next week we will be talking about the different types of Sickle Cell Disease! Stay safe everyone and see you next time!

Life update

Hey,

Here’s my first life update, a ton of things happened this past week. I’ve been working hard on my last school exam so my stress levels has been very high and stress is not good for me. Tomorrow I have an oral exam in front of a jury for my final project and I’m kinda shitting myself tbh. And with that mentality I’ve been admitted to the emergency room yesterday. I had pain all over my body when I was about to go to sleep and I couldn’t take it anymore, I had to ask my father to bring me to the hospital, due to the covid-19, I had to go through this alone. Now I may be 21 year old, but I’ve never had to go to the emergency room alone and I was so scared, I knew what they were going to do to me but that was how I was feeling. Anyways got into the hospital and stayed there for the night, as my pain was so bad, they immediately gave me morphine (though I hate it so much) and my pain went away immediately. To be honest I wanted to leave at that instant, I hate being in hospitals and I just wanted to escape. But the doctors said no and I had to wait the next day, which was a good call because I was honestly feeling woozy and my head was spinning.

The next day, they stopped pumping me morphine because my pain was going away but I still had the effects of the morphine. I was feeling dizzy and so tired. They let me out but I had a condition. I couldn’t go back to school for my jury presentation, I understood where they were coming from but I was scared I was going to fail my school year, this disease isn’t known worldwide and sometimes teachers think I’m making excuses when I’m literally just a sick person.

My presentation is today, I’m going to try to negotiate with my school to see if I can present it by videoconference or if there’s no hope.

I’ll update you guys!

The day in the life of a sickle cell!

Hello hello,

Today I wanted to talk to you about how’s a typical day for a sickle person. Disclaimer !! First I would like to point out that this day is not the same for everyone, so do not generalize what I’m saying.

In the morning I get up around 8am (I can’t wake up later, I don’t know how people do it honestly) and often it is with pain, I don’t think I’ve had a day without pain except if I’m pumping morphine, but that’s another topic for another time. Anyways, I get up and take my daily pills, I have 10 pills to take in the morning and then 6 in the evening. When I talk about it I am often told that it is a lot but I am so used to it that it doesn’t bother me anymore, my younger self would say otherwise.

After doing the usual like eating, taking a shower and maybe watching TV with my sisters, I often work for school for a few hours. I do not have the strength to be able to work for long periods of time otherwise it will bring me a lot of pain. I have to take breaks every 2 hours or I could end up in the hospital the same evening.

Every week, I have to go to the hospital to take a blood test, so on the days I do go to the hospital, I will often wander around the different departments and I will say hi to all of my favorite nurses and educators, most of them have known me since I was in diapers, so they are like my second family.

After doing my little tour, I go to the lab to take my blood test and it can take me up to 45 minutes to find a vein, because most sickle cell patients have very, very thin veins so either they have to prick me several times or we have other means to have a vein such as the P.A.C (another subject for another day). Personally I don’t have a P.A.C now but I plan to have one soon.

I have a blood test because doctors have to regulate my hemoglobin level, compared to “normal” people, we naturally have a very very low hemoglobin level. After my blood test I can go home, if my blood test is positive, nothing changes I continue my day as it is but if it is negative, I have to go back the next day to get a transfusion.

During the rest of the day my morning pain decreases and sometimes it stops completely, in the evening after the mundane things, I will go to bed early to start all over again the next day.

Well, I hope you liked this post, see you soon in the next one!

What is Sickle Cell Disease?

Sickle cell disease is a group of disorders that affects hemoglobin, the molecule in red blood cells that delivers oxygen to cells throughout the body. People with this disorder have atypical hemoglobin molecules called hemoglobin S, which can distort red blood cells into a sickle, or crescent, shape.

How does this effect my life?

Every person is different, some people don’t even notices that the disease is there and can live without feeling constant pain and some just can’t get away from it. Personally I’m the latter, everyday I feel pain and nausea but there’s not much I can do about it, except rest and take my medicine. But I don’t let this bring me down, what doesn’t kill you makes you stronger right? I do have tons of limitations though, like I can’t fly, I can’t do any kind of sports and I cannot stand for long periods of time, I have to be cautious about drinking and smoking (which I don’t), and just life in general. For example, you guys could catch a cold and after a couple of days you’ll be alright, but if I catch a cold, I’ve got to go to the hospital. I’m not saying any of this to make you feel bad but to bring awareness and share my life experience.

Is there a cure?

Yes there is, there is a surgery called the bone narrow transplant. But we have to use stem cells from another person, and that person has to be compatible with us, kinda like a donor. But there are high risks to this surgery which could lead to… well death. After the surgery it requires months and months of recovery with chemotherapy which could also not end very well.

How do you know you have Sickle Cell Disease (or Anemia)?

Well usually parents will know at a very young age, the common symptoms on a baby are swollen hands and feet. But if the parents didn’t figure it out that early, the commons symptoms are that the white in your eyes will be slightly yellow or for some people VERY yellow, (that’s how I recognize my fellow sickle buddies), being absent from school or work too often, being extremely skinny (now I know that shouldn’t be a bad thing, but as a black woman, all I want is curves and I’m flat like a cutting board), and being kinda “weak” I guess.

Well that’s it for today lovelies, if you have any specific questions don’t hesitate to ask! Have a nice day!