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Meet Mia: IRS Rep, Student, Warrior, SURVIVOR!

Warrior Mia Robinson

Meet Mia Robinson, a strong and exuberant woman who has taken on multiple challenges in her life and has overcome them all. She is the epitome of a sickle cell warrior, and I’m sure at the end of this interview, you will agree.

Ms. Robinson thank you for providing this interview. I’m very excited to be speaking with you. So let’s begin…How old were you when you found out that you have sickle cell?
I was 2 years old when I was diagnosed with Sickle Cell. I can’t really pinpoint an age of when I found out. I kind of always knew.

I know what you mean. I can’t pinpoint the exact moment that I sickle cell was explained to me either. What techniques did/do you use to cope with school and sickle cell?
I have always taken folic acid for as long as I can remember. I knew there were certain things I could not participate in because of the Sickle Cell. My teachers knew about and it and I would let them know ahead of time that there is a chance that I may miss some classes because of it.

What do you do? What kind of experience and schooling does one need to obtain your job?
I am a contact representative with the Internal Revenue Service. All that is required is a high school diploma and some experience.

How did your childhood and your parents influence you in your career choice?
I am currently in school for Sociology. I think sociology is where my heart is. As I’ve gotten older I realized that I like talking to people about different aspects of life. Learning about different cultures and how people view life. My mom has always been supportive in whatever career I choose.
Describe a typical day on your job.
A typical day on my job is pretty basic. I spent the majority of my time sitting at a desk because I can’t work jobs that require me to do a great deal of standing because I have AVN in both of my hips due to the Sickle Cell. I’m either answering phone calls assisting people or processing amended returns that people have sent us.
How do you manage SCD and still maintain a thriving career?
Well, being in school, working full-time, and having Sickle Cell is pretty rough. My manager is very understanding. I let her know ahead of time about my illness. I try to save up my leave because I never know when I will have to use it or how much of it will have to be used. I make sure I stay hydrated and take all my medicines.
Are you comfortable revealing your sickle cell diagnosis with your coworkers? Why or why not?
Yes I am! It doesn’t define me, but it is a part of who I am. I see it as a way to educate people because, believe it or not, a lot of people still don’t know about sickle cell.
Have you noticed a difference in how your coworkers treat you once they know you have SCD?
Not really. When I’m not at work, I can tell some of them seem a little concerned. They want to make sure I’m ok. But they don’t treat me any differently from anyone else.
How do you explain sickle cell to individuals who are unfamiliar with the disease?
I make sure I mention that it is hereditary. I tell them it is a red blood cell disease where my blood cells are shaped differently from theirs. Anything can trigger pain so I make sure I get my rest, stay hydrated, and just be a little more cautious in things that I do.
What advice would you give a fellow warrior wanting to join your profession?
Go for it!! It’s not a stressful job so I would recommend it to anyone who is looking for something at slow speed.
A non-stressful job-that sounds fantastic, but when stressful moments come up, how do you deal with it?
I cope with stress by simply not allowing myself to become stressed. I avoid drama at all cost. I don’t give place for it or make any room for it. For things out of my control, I put in God’s hands and let it go.
You mentioned that you are studying sociology in school. What are your long-term career goals?
In the long-term I would like to mentor young girls, to help them to see their own self-worth, to teach them that they are all beautiful in their own way. Embrace you! Be happy with what you’ve got. Make it work. I would mentor young people, providing them a dose of reality on everything from sex, girls, school, drugs and everything in between.
Has sickle cell limited any areas of your life?
For the most part, I would say no. I am the type of person that will try anything despite having Sickle Cell. I pay attention to how my body reacts to certain things. If I get sick from something I tried, I will either never do it again or try to do something to prevent getting sick the next time. I realized that my body does not do well with altitudes so if I have to fly anywhere I hydrate my body more than usual or sometimes take something to knock me out on the plane.
When you reach obstacles in your life, what helps you through it?
Prayer. I also have extremely supportive family and friends. The combination of all three of those things is what keeps me going.
Do you have regular pain (more than 2x a week)? How do you cope with this when you are working?
For about the past 6 month, my pain has mainly come from the AVN in my hips. It seems like it’s on a daily basis. Usually if I’m sitting, it doesn’t hurt. Normally, I’m in pain once or twice a month but it is controlled at home with meds. I have to go to the hospital for pain crisis only about 2-3 times a year.
What is your daily medication regimen and what medications do you take when you are in pain?
On a daily basis, I take folic acid, cozaar (for my kidneys), and diamoxx sequels (for intercranial pressure). When I’m in pain, I usually take ibuprofen or morphine depending on the pain level.
I’m not familiar with Cozaar and Diamoxx. Will you tell us more about why you are taking these medicines?
Last year I was diagnosed with idiopathic intracranial pressure (IIP), which is basically an increase of pressure on the brain. IIP causes a wide range of symptoms from severe migraines to optic nerve damage, which if left untreated could cause blindness. IIP is mostly diagnosed in overweight, young females and is completely separate from sickle cell disease. Treatment of IIP makes the blood more acidic which is very bad for individuals with sickle cell disease like me. It lead to weight loss and the treatment lowered the elevated pressure, but further increased the acidity of my blood. On top of all of this a lower lumbar puncture (spinal tap) caused a loss of sensation in my legs, weakened my bones and sped up the avascular necrosis in my hips. I now have a limp and sometimes require the use of a cane. I had eye surgery in May. The surgeon had to cut my optic nerve in order to drain excess fluid. All of this was on top of sickle cell disease!
Wow! You are truly a survivor! How did all of this affect your life and your personal relationships?
Most of my relationships became stronger. I did lose one friend through fear, but for the most part I have a strong support system. It wasn’t all bad though. I lost around 75lbs and changed my eating habits. My appetite changed. I cut back on fried food and processed food and I drink more water. I did briefly lose my sense of taste and smell, however, which made everything taste like tonic water.
I must say I am astounded and encouraged by your determination and your strength! Has sickle cell affected your personal life in any other way? For example, are you in a relationship, do you have kids, etc.
I am not in a relationship nor do I have any kids. In the past anyone that I have been in a relationship with has known about my illness and was supportive whenever I had appointments or was sick.
If you could have a conversation with your 14 year old self, what would you tell him/her?
Take care of your body better. Take your health seriously. Stop using Sickle Cell as an excuse to not do anything.
Is there anything else that you would like to share with the sickle cell warrior community?
I would tell them the same thing I would tell my 14 year old self. You don’t want any additional health problems added to Sickle Cell. You may know how to handle the Sickle Cell but when you have new problems stemming from something else then things could go wrong. Take care of your bodies. Your bodies will treat you how you treat it. If you take care of it, it will take care of you. Pay attention to what you put in your body, on your body, and what you do with it. You only have one!
I recently mentored a young girl who was scared about what her future may hold. I would tell the sickle cell community the same thing that I would tell her:

Roll with the punches, if there’s something in your life that you don’t like, change it. You can plan your life how you imagine it, but you will never know what roadblocks or detours may come your way. Put it God’s hands and roll with the punches.

This interviewer can attest that is exactly what Warrior Mia has done. Thank you Mia for sharing your story with us.

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Lakiea Bailey

Lakiea Bailey

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