Have you ever wondered about what you would do if you had to put a pause on your dreams because of sickle cell? Well Norma made that decision, and still lives life with all the wonder, joy, radiance and gratitude.
Hey Norma, thanks for turning in this interview. Let’s take it from the top. How old where you when you found out you had sickle cell? I was 5. That was the first blood transfusion I remember having.
So weird, that’s the same time I found out as well. How were you able to cope with school and sickle cell? Not very well, as I lived in a small town and not much was known about sickle cell then. I had blood transfusions frequently, and was hopitalized a lot for cold, flu, etc. I missed alot of school but was able to get work sent home to me.
How did your childhood and your parents influence you in your choice of career? Well I was always told I could be whatever I wanted to be, but being sick all the time gets discouraging. I finished school and even went on to take some college courses but failed to make my goal of becoming a CPA so far. I haven’t given up hope, still trying to pursue that dream.
Don’t give up on that dream Norma! It might take longer than others, but you can make it happen! So in the interim, what do you do? What kind of experience and schooling does one need to get your job? Well I’m an administrative assistant. I took computer courses (i.e. Microsoft Office), business courses (keyboarding, math, etc) while working in various resturants. And now I’m taking some accounting courses to see if my dream is still attainable.
Describe a typical day on your job. I’m currently on disability but before that my day would start at 8 and would include some telephone work, typing, filing and depending on the job dealing with the detectives or other officers and sometimes the suspects or victims as the came in to make their statements. Now my life includes frequent trips to the hematologist, hydrea, and lots of rest. In Amarillo where I live now I have to be more than conscience of the weather and temp.
Did you notice a difference in how your coworkers treated you once they know you have SCD? Yes I have and yes I did. Those who knew what the disease was were more tolerable than those who did not. I’ve told people for years that SCD has nothing to do with AIDS. Two totally different things, and yet there is so much ignorance.
What advice would you give to someone wanting to join your profession that has sickle cell? First and foremost, whatever you want to acheive you can, with a little care, and understanding your body you can do anything. While in school make you do only what you can handle and once on the job make sure you keep a sweater at your desk and plenty of fluids and try to avoid people that are ill. All kinds of germs fly around the office especially if you’re dealing with the public.
Great advice. Has sickle cell limited any areas of your life? I would have to say yes, I’ve not been able to do the traveling that I would like and I would love to have had another child. And if not for th sickle cell I would hope to have that career as an CPA insteadof just now trying to go to school for it.
When you do reach obstacles in your life, what helps you through it? God, and knowing that I’m blessed to have lived these 47 years. I was always told I would die at the age of 10. And also the support of my family.
Do you have regular pain (more than 2x a week)? How do youcope with this at work? Yes to the regular pain, and when I can’t take the pain killers. I take some Advil and try to walk off and work through the pain. Sometimes when at work getting warm would do trick, so I kept a heating pad, a blanket and a jacket at me desk. And sometimes my boss would let me take a break to just walk.
What is your daily medication regimen and what medications do you take when you are in pain? Daily it’s folic acid, allegra, calcium supplement and hydrea. For pain its hydrocodone, 800mg motrin and if the crisis persist it hospital time and morphine.
How has sickle cell affected your personal life? Being in any relationship is hard enough , but having to explain your illness to the one you’re dating doesn’t make it any easier. I’m married now happily for 22 years but it’s been a struggle. I have one child a son and I feel more than blessed to have him but couldn’t have any others. My husband was active duty navy and there were bases and countries that I could not travel to, so I felt like he made alot of sacrifices for me.
My husband is 51, retired Navy and a good man. He and I were pen pals, we wrote to each other while he was on a 6 month deployment. Once things were progressing nicely(about 4 months) I sent him some literature on sickle cell and told him I have this disease and my son has a trait. He read the material, asked questions and it progressed from there but I don’t think he really knew what he was in for until my first crisis. Seeing me get 4 units of blood, the pain, the drugs I thought I’d lost him for sure, but he rallied for the count. Stayed by me side every night, held my hand and while they poked and poked for a vein. Told me he loved me through my tears.
That’s so beautiful. Give your hubby a smooch for that, he rocks! If you do have kids, please describe in as much detail as possible, how your pregnancy, labor and delivery was. Do any of your kids have sickle cell disease? My pregnancy was spent going back and forth to the doctors, I had a blood transfusion every month, I walked everyday, but it still took me 2 1/2 days to deliver my son. I had small doses of pain meds during labor and lots of fluid. My doctor heldout for a vaginal birth so i wouldn’t have to have any more blood. The delivery was quick once my water broke. My son has a trait.
Looking at the 14 year old verison of yourself. What would you tell him or her if you could? To hold on, that one day you will know love, that the pain of not being like everyone else does pass or I should say that you find a peace in what you can/can’t do or become. That one day you will come into your own, that love is not fleeting it can be found, and it can be good. But most of all to be happy with who and what you are.
Thank you for sharing your life with us Norma. Congratulations on all your accomplishments, your 47 years on earth and all the wonderful years you have to look forward to.