Sickle cell conquerors: Jessica Desire

Our next sickle cell conqueror is Jessica. She is a RN and here is her story!


1.)How old were you when you were diagnosed with sickle cell? I was 3 years old when I was diagnosed with sickle cell. I remember I was crying and running a high fever. My parents couldn't console me and took me to the Children's Specialized Hospital.
2.) How did it affect your childhood? I realized not everyone went to the doctor as much as I did. I grew up going to a Children's Hospital of Philadelphia outpatient facility. I was seeing my hematologist every 3-6 months, getting multiple blood draws, and doing random scans and ultrasounds. I also had to see an educator and social worker to learn about my disease. It felt like I had to keep it a secret since all the other kids only went to the doctor for a physical or if they had a bad cold. 
3.) How did you cope with nursing school and sickle cell? Nursing school was stressful in general so it was important to stay on top of my health as much as possible. It made learning easier because all my life I have been the patient. I had a better connection with my patients because I understood their perspective firsthand.
4.) How do you manage sickle cell and still have a thriving career? I tell everyone that I do what a normal healthy person does but 3x more. I make sure I get plenty of exercise, drink lots of water, do not expose myself to extreme temperatures (hot or cold), get a good night's rest, and eat healthy. I do not smoke and I drink socially in moderation which is probably a few times a month. Sometimes my sickle cell is triggered by stress; I relieve by stress by taking a yoga or dance class, spending time with my friends, or reading. In my career, I practice what I preach to my patients.
5.) Has sickle cell limited any areas of your life? I was an athlete growing up. Sickle Cell limited my performance in sports. It was hard to reach my full potential because of setbacks from a pain crisis. Flare-ups would occur if I was dehydrated, pushed too hard during practice, or if I had gotten hurt during a game. Doctors advised me to not play at all or to pre-medicate myself with pain pills before practice and games. Ultimately, I either had to sit out or quit altogether. 
6.) How has sickle cell affected your personal life?  It always felt like a big secret I was keeping. I did not want to explain to anyone what sickle cell was. Most people never even heard of it and their first thought was "is it contagious?" Others have heard of it and look at me like I'm a functioning drug addict. When they do find out, after their first impressions comes pity and they start treating me like I'm fragile. Fortunately, I have type SC and it is less severe. I just try and and explain the disease process and reassure them I am fine. If I do have a crisis and need a ride to the ER or if I cannot do something because it might trigger a crisis then I will let them know. In my relationships, I would not say sickle cell has made or break them but it has shown me who I can depend on. 
7.) Do you have regular pain, related to sickle cell? How do you cope? When I was younger I often had pain in the joints of my legs probably due to sports. Nowadays, my pain is mostly in my arms especially my right shoulder due to high school tennis. It never healed properly and my sickle cell often targets it limiting my movement and activity. I only take pain medication when it is severe and unbearable. I usually can get by with heat pads, strength training, massages, and yoga. I try my best to not let the pain discourage me. I acknowledge and appreciate the good days when my body is in sync.  
8.) How often are you in a crisis? How does it affect your life and routines? Can you describe a crisis for us? 
When I was NOT consistently living a healthy lifestyle, it seemed like I was having a crisis back to back in a month. There was a time I was admitted into a hospital a couple times a year. Now, I have an ER visit once a year and I am able to go home. 
When I am in a crisis, everything stops. Whatever I had planned that day is cancelled. Depending on the severity of the crisis, I'll let loved ones know I am experiencing a pain crisis. I have to figure out who I can call in case I need their help to get to the ER or to pick up meds from the pharmacy. Sometimes, my sickle cell targets my legs and I have trouble walking due to the excruciating pain. 
During a crisis, I have to lay down and take my pain medication every 4-6 hours on the dot for the whole day and maybe night. I have to make sure I eat because one of the side effects I experience is nausea. I use heat pads and drink a lot of water to stay hydrated. If the pain hasn't subsided by the next day, I'm going to the ER. Sometimes, I go right away to the ER because I can feel when it is already that debilitating severe crisis pain. The best way I can describe crisis pain is like I'm a Barbie doll and my arm or leg has been pulled off. If I do not find a comfortable position during a crisis, it feels like someone is hitting me with a hammer and my joint is shattering.  
9.) What is a typical day like living with sickle cell? When I wake up, sometimes I am in pain. Depending on the weather, for example, it might be cold in the room and I was not wearing long sleeves or my arms were exposed while I was asleep causing mild sickle pain. I do some stretching and a few quick yoga moves before I start my day. Usually the pain goes away or it is very mild and I can still go to the gym later on. Strength training and cardio really help move my joints and keep the pain away. I am on a clean diet so I eat 5 meals and drink about 1.5-2 L of water a day. I take my vitamins and supplements in the morning before heading out the door for work or whatever I have planned that day. I have been doing very well that I only need to see my hematologist when I have an issue but I prefer to see him once a year anyway. As a child, I went through a lot of preventative care for every body system. As an adult, care seems to be reactive and to only relieve symptoms. Therefore, it is very important I stay on top of my health on a daily basis.  
10.) What advice would you give to those with sickle cell or those who want to learn more? I would tell those with sickle to be more active and healthy to reduce the amount of crises and secondary health issues. I would advise them to find other vices and activities to help relieve their pain rather turning to narcotics. I would tell them to share their stories because they may inspire other, learn from someone who also has sickle cell, or at least bond with someone going through the same issues. It is very fulfilling to know you are not alone. 
For those that want to learn more about sickle cell, do not just go by what you read on google. The information is straightforward, sad, and sounds like a death sentence; it is hard to see the human connection in those articles. Listen to someone who has sickle cell and ask a lot of questions. There are plenty of people on Youtube who have been diagnosed and that document their experiences. 

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