Hi there Sickle Cell Warriors!
First off, let me just tell you that your website brought tears to my eyes. It’s amazing to see an entire Sickle Cell community because at times I feel like no one understands what I go through. I’m currently living in Oklahoma and could probably count on one hand how many individuals I know that have SCD. This is especially difficult for me because I encounter a lot of doctors and nurses who aren’t familiar with the disease but assume all patients are drug seekers. After jumping through all types of hoops to show that I am in pain, I often get ‘”You’re not like the typical Sickle Cell patient, I know most of them are just wanting narcotics.” As I’ve gotten older I have gone through a range of emotions with my disease. At first I was upset because I couldn’t get the medical services I needed. Then I became empowered, I wanted to step up and speak out about SCD because I truly believe that people are unaware of the seriousness of this disease. As frustrating as it can be at times, I want to raise awareness about this because I think it’s so important for everyone to be knowledgeable about this. Now, I’m not saying I know everything because I’m certainly learning more myself but I want to be apart in helping others learn too. This website has many topics that I’ve often had questions about as well but I didn’t know where to turn. I can’t tell you how happy I am that I saw your site. Keep up the good work! I would love to get connected with other warriors and especially those in the Oklahoma area. If you know of any events or have ways I can become an advocate within your site please let me know.
How old where you when you found out you had sickle cell?
I’ve had sickle cell for as long as I can remember. I believe my first hospital visit was around 4 or 5.
How were you able to cope with school and sickle cell?
College was where I had the majority of my issues. I had to figure out how to keep my stress level down and take care of myself in a completely different environment. I’d be lying if I said it wasn’t difficult. I had to retake some classes because I was hospitalized due to my sickle cell but I was able to overcome that. To me, it had a lot to do with my wonderful support system. They were always there when I had those unexpected issues with my sickle cell.
How did your childhood and your parents influence you in your choice of career?
My mother is absolutely amazing and I look up to her for so many different reasons. I truly admire her and want to follow in her footsteps. My mother is a nurse so I decided I want to go to college and be a nurse too. That didn’t last long for me and I changed my major and got my degree in Criminal Justice.
What do you do? What kind of experience and schooling does one need to get your job?
I am a social worker, which is very stressful but I absolutely love it. To become a social worker you need to obtain a Bachelor’s degree.
Describe a typical day on your job.
“Typical day” is not something that happens in the life of a social worker! But I think that’s one thing I enjoy about my job because you never know what’s happening next. I really enjoy my job because I get to work with children and their parents to help them become a better family. I come across people from all walks of life and I just hope that I have made a positive impact that will lead a lasting impression. Knowing that I’ve helped them get through their difficult times is my biggest reward.
How do you manage SCD and still maintain a thriving career?
Being a social worker brings on lots of stress and I have often found myself having more issues with sickle cell because of my job. I’ve learned that when I first feel my pain level rising I have to remove myself from the situation. At times I’ve left work to just be alone for a few moments. I’m able to calm myself down and not get soo stressed out that it affects my health.
Have you noticed a difference in how your coworkers treat you once they know you have SCD?
Honestly, a lot of my coworkers were unaware of what SCD is. I find myself explaining to them what it is and how it affects me but they’ve never once treated me differently because of it.
What advice would you give to someone wanting to join your profession that has sickle cell?
This profession is very stressful so be prepared to find ways to reduce your stress level. It’s an exciting job and I don’t think having SCD should ever limit what we do but unfortunately, at times it does. would say to remember to take days for yourself because if you never take a break you’ll wind up with more problems with your sickle cell. Finding things that relieve stress is the most important thing in this field of work.
Has sickle cell limited any areas of your life?
Most definitely, but now I realize doing those things like working out, swimming or drinking alcohol are more harmful to me. If giving up those things will prevent me from having a sickle cell crisis then I’m more than willing to do that!
When you do reach obstacles in your life, what helps you through it?
My mother, brother, and sister. We have a close relationship and they are my biggest cheerleaders when I need it.
Do you have regular pain (more than 2x a week)? How do you cope with this when you are working?
My pain varies each week but I’ve noticed as I’ve gotten older I have more pain on a regular basis. I think my way of coping with it is blocking it out in a sense. Days that I don’t have some type of pain is what I usually notice.
What is your daily medication regimen and what medications do you take when you are in pain?
When I’m having a sickle cell crisis I take Morphine but I take Advil or Aleve throughout the week.
How has sickle cell affected your personal life? For example, are you in a relationship, do you have kids, etc.
I’m not currently in a relationship and I don’t have any kids but someday I’d hope too. I know that my cousin had a very difficult time with her sickle cell after she gave birth to her child and my doctor told me I should never have kids of my own. I’m interested in learning more about other women who have given birth with sickle cell and what their journey was like.
Looking at the 14 year old version of yourself, what would you tell him or her if you could…?
I would say don’t worry about what others think of you. Stop being afraid and step out of your comfort zone and conquer your dreams because the only one holding you back is YOU!
Is there anything else that you would want to tell other sickle cell warriors?
[stextbox id=”custom”]Here’s to other men and women just like me. It’s amazing to see an entire Sickle Cell community because at times I feel like no one understands what I go through. We are much stronger than the pain we bare and I pray that one day someone finds a cure!![/stextbox]