Written by Sickle Cell Warrior on 20 October 2013
When I first found out that I had sickle cell anemia I was two years old. The way I found out from my mother telling me the story. I was in my walker playing with my older brother and sister and I had bumped my hand on the wall, she noticed me crying saw that my hand was swollen but just thought it was from me playing. Days later, the swelling didn’t go down she took me to the hospital where they withdrew blood and ran some test that’s when they later discovered that I had sickle cell. I’m the only one in my family of four children to be born with sickle cell. I was the third child. After I was born considering the circumstances and possibilities of what could happen, my mother and father later went on to have another child who is sickle cell free, fortunately for them. When I found out I had sickle cell my parents knew nothing about it all even though there is some history of sickle cell being in my family. It was a long learning process for them to understand exactly what it was and all the symptoms that came along with it. However for me I didn’t fully grasp what having sickle cell meant until I was older about seven years of age and going to the sickle cell clinic in Milwaukee, Wisconsin having it explained to me during yearly visits.
In elementary school my principal said he had a brother with sickle cell so if I was out he understood why. I missed a lot of school often weeks at a time but it was very easy for me to stay caught up because I went to the same school as my siblings. So when I would miss school and needed to get my homework, on any given day one of them would go to my classroom pickup my assignments from my teacher. I would do all my homework in the hospital to make sure I always passed and got good grades.
As a kid I was always told that I was so very smart by my mother. I would have to say the hardest transition for me was from junior high to high school because I wasn’t able to attend a lot of the school functions with me having crisis frequently. I would be in and out of the hospital. This is mainly because I would be trying to keep up with my peers and play sports competitively. This was the time when I started to notice that I was different and I couldn’t do all the same things so I took it very hard at times. I got teased off and on for my eyes being jaundiced. Even though it never lasted long, I felt like my classmates would stare at me and I hated when they asked me question about it.
My mother and father never placed any limits on me growing up I was always just one of the other kids. Growing up my mother would always ask me what I wanted to do in life and my answer would be a football player since that was my favorite thing to do since I was young. However knowing the physical stress that sickle cell had on my body and not wanting me to set myself up for disappointment she would tell me to find a skill using my hands, or something where I could sit down. She just wanted me to focus on more realistic goals but never once tried to limit me. My father would reiterate the same thing. His favorite thing to tell me was that I needed to work harder and smarter and there would be plenty of opportunities for me. He also told me to never let sickle cell be a negative for me and to use it to my advantage.
Right now I am currently working in guest relations for a sports entertainment and services company. I work for a professional baseball team and for any events that go on at the ballpark. With the same company I also work for the arena providing customer service for professional basketball team, concerts, woman’s professional basketball team, indoor arena football, and any other events that gets booked in the venue. I have done some extra work for a talent agency in Phoenix, Arizona and have been featured in a couple of commercials. Last year I even had the chance to meet Montel Williams. My goal is to have a non-profit organization so I can continue to spread the awareness of sickle cell anemia. Right now I am currently working on a book about my experiences living with sickle cell.
I am a person who loves to work because I love to be around people and I am always on the go. I constantly keep myself busy so the best way that I maintain my career is by taking breaks when I need to. Making sure I get enough rest and drinking plenty of fluids when I’m working and when I’m not working. I take all my medications daily and on time, I make sure to schedule my doctor’s appointments every month. I follow up with my doctors after hospital stays and when I have pain I take my pain meds before the pain gets out of control so I can stay out of hospital. I keep my managers informed and aware of what is going on with me at all times when I am sick so they know I am committed to my work.
I never ever have let any of my co-workers know that I have sickle cell. I just prefer to keep that private at work because I do not want that to affect how they treat me. I choose not to tell them for the simple fact sometimes when you tell people you have a medical condition you are dealing with I feel like they tend to unknowingly look at you in different way or become sympathetic towards you and I didn’t want any of that. They might also think that you get special privileges and think you do not have to do what they have to do just because you have this illness. The only people that I let know are human resources and the managers because if something were to happen to me at work they would have it on file in my folder. And when I have to call off and miss work because of a crisis they know the reason why and if they have a problem with it I can tell them look you know I have sickle cell it’s in my records on file. There has been times in the past where I felt like I didn’t get the job because I told my future employer that I had sickle cell so now I’m very hesitant and even wait to tell them until I have the job.
Sickle cell has limited my work life because I am not able to work a lot of jobs because of the physical nature of the job. I went to a two year technical college and received my certification in printing and publishing which involves running a printing press. But because of the twelve hour shifts and the constant bending, lifting up loads of paper I was unable to hold a job as a printer. It was just too much on my body. It seemed like I would always be in and out of a crisis. I even had my college instructor tell me often when I was going to school and when I later went on to work for him that, if I wanted to stay in this profession I should look to work in the front office. He was aware of what sickle cell was and knew the field I was in was hard labor. It has also put a strain on me financially with having medical bills that my insurance won’t cover and me paying out of pocket for a lot of the cost.
When it gets really bad, what gets me through is Faith and hope knowing that it’s going to get better. I know that in the current state when I’m having all this pain and having all this stress and nothing seems to be working that if I can see the tiniest sign of light then I know it’s going to get better and I have that to hold on to. I also look at where I have come and have the vision to see that this obstacle no matter how big it seems it’s only temporary.And of course knowing that I have family on my side to show their love support brings a sense of relief to me and puts a huge smile on my face. Last but not least music I have always been a fan of music it’s something about those feel good songs that takes you to a time and place where things where more happy and I love that more than anything it’s like a personal escape.
Yes I do I have regular aches and pains sometimes daily but not full out crisis. My crisis has been very manageable. Usually if my pain is at a four or under on a pain scale from 1-10 I’m highly functional, able to get around be mobile like my normal self. When it gets greater than that that’s when I just want to lay down and take pain medicine so that it will subside and go away. My job requires a lot of standing but I can take a break when I need to so when I have pain I will go on break take tramadol than comeback to my post and see if that helps. It doesn’t interfere with the type of work that I do on the job. If I am at a four on pain scale already and I think that my pain is not going to go away or I have already taken medicine to get it down to that level then I just won’t go into work. There have been some instances where I went to work in pain and I had a hard time getting off once I got there and the managers didn’t think I look like I was sick even though I had let them know beforehand so to avoid a situation like that again I won’t go in to work when I am at four and I can pretty much judge my pain well.
My daily medication regimen is folic acid and hydroxyurea. I found that the hydroxyurea has significantly cut down on the number of crisis I have had in the past. What I take when I am having pain is oxycodone. I like to start out by taking one and if that doesn’t helps then I will start taking two until I am no longer able to tolerate the pain. In the hospital I receive Dilaudid and that works best for me.
I kept my illness a secret growing up so I would always avoid getting into long term relationships but since then I have opened up and now I am engaged to be married in June of 2014. I have no children because of the thought of me passing on the sickle gene I could not live with at the time. Now that I am open about it and I tell everyone I am involved with seriously that I have sickle cell the possibility of me having children one day has become a reality.
My fiancée has been a god send for me she is truly a blessing for me to have around. Since I no longer live in my home state where I was born and all my family is at she has filled my mother’s shoes so to speak as it relates to caring for me and my sickle cell. She will sit with me every time I am sick and in the emergency room or I am in the hospital even taking off of work to make sure she is by my side. Some days I will have to tell her “you know you can go home,” and she is still hesitant to leave. She wants to know every time I am having pain crisis and I need to take medicine for it and still gets upset when I don’t tell every time. She takes me to pick up my prescriptions and she just has been a huge supporter of me since day one when I first told her I had sickle cell. The first time I told her was about three months into dating. Her reaction to it was she has heard of it and okay. After that I would tell her different information about sickle cell so now she knows a lot about it. I was on hydroxyurea when I met her and having less pain crisis so didn’t she see me have first pain crisis until about eight months into the relationship when we were living together.
I would tell the energetic young 14 year old self of me to stay motivated and understand that you do have a chronic illness so your life is going to be a lot different than your peers and your siblings but do not let that stop you from doing what you want. You can still do whatever you want and never be ashamed of having sickle cell because you are truly special and here for a reason.
The one thing I would tell others is that if you are not already opening up and speaking out about your sickle then I think you should. The reason why I say this is because it’s very therapeutic to talk about things and it will help you release some of the pain that you have inside about your condition.Also you may find that there are a lot of people who may be willing to step up and help you in some sort of way that you might not be aware of had you not. And by speaking up you never know who you can help or inspire. For me it came later rather than sooner and that is probably the one thing I regret but I am taking the right actions and doing so now.
Fighting For Your Rights in the Hospital