Q1: For the people who are watching can you please just give us some quick background on who you are and how we met?
A: Well, I came and spoke at your church and we’ve been connected ever since. As far as who I am, I was born and raised in Rocky Mount as Colesha Hagans. Phoenix is my stage name, I am the singer of a go-go band. My band name is Just Once. I now live in Raleigh where I am a mother of two, daughter and son. I am very much a serial entrepreneur and colorist. And, I own a specialty watch boutique along with a cosmetic line developed around sickle cell disease. I do it all.
Q2: Tell our viewers about your experience with Sickle Cell and how it has affected you.
A: Well, I was born with sickle cell disease. Most people don’t know that you are born with it, I get that question a lot. I had my daughter at a teen age and I didn’t have much prenatal care with her but childbirth during that time was normal and easy. Fast forward 20 years later to when I was pregnant with my 6-year-old son. With him I was already considered high-risk because I was 34. I was fearful with age and with sickle cell how my body would respond to pregnancy. While carrying him things were picture perfect but after giving birth to him I did have an infection and I did go into crisis. We did stay hospitalized longer than most, about 9 days in hospital after birth.
Q3: Could you tell us what the word “warrior” means to you?
A: Warrior to me means that you are brave-heart and fearless. While facing SCD the pain I have experienced has been the worst pain I have felt in my life. Even comparing it to childbirth. And, not just the pain but the physical wear and tear on the body, mental affect, and dealing with people who may not understand how you’re treated by medical professionals. As a warrior, we face so much it’s like what can’t I do? I can do anything that I want to do. Having SCD is my superpower and prepares me to deal with so many other things.
Q4: Could you describe to us how you push through your pain despite everything that you go through?
A: Growing up with SCD people are always telling you to rest. But for me, I have to take advantage of every good day that I have. I played volleyball, basketball, and soccer growing up and I used to always think playing too hard would cause me to go into crisis. “We will deal with that if it happens” was always my answer. I experience some level of pain daily and it literally just makes me stronger in everything that I do. As much as I like to think I am superwoman I am not. I do have days when I can’t deal with the pain and that’s when I call on my support system and most importantly God and I get through it. When dealing with pain management and medical professionals, some SCD patients are seen as seekers. In all honesty sometimes, we are dependent on our medication because imagine being on medication since birth. However, I do a lot of alternatives such as heating pads and try to use medication as a last resort. But sometimes you have no other choice but medication. Doctors also try to make experiments out of you when in ER and that’s not the time to try something new. I have been researching ways to bridge the gap between patient and provider. I like to think that I am important and how I feel matters but sometimes you are just another patient. After 41 years I have a high tolerance of pain.
Q5: When was your last crisis and how bad was it?
A: People with SC have daily pain, but my last crisis was months ago. Very minor, lasting minutes, a couple hours maybe. My last hospitalization was a year ago. I stopped using medication while nursing my son and as of today I am still not on any. However, I am very big on nutrition and try to eat as balanced as I can along with resting, exercising, and keeping my stress levels down.
Q6: How important is having a support system?
A: Sometimes you can’t put into words how you feel during a crisis and it is also a mental health thing. Having someone who is educated and can speak up for you is so important. I’ve actually been in the ER by myself and I had to speak up for myself because doctors wanted to tell me the dosage of meds I was on was too much. Their minds were so made up that they gave me so many rounds of different meds instead of what was on my file. So, having people in your corner like your hematologist who will speak with health professionals and vouch for you can save your life. It’s very important to have an EDUCATED go-to.
Q7: Where can people find more information on your businesses and your personal life outside SC?
A: Gogo band ig: Jusoncegogo
Artist fb: Phoenix Lei
Artist ig: phoenixlei
Cosmetic ig: scarletmythcosmetics
Cosmetics fb: Scarlet Myth
Watch boutique ig: unwrittenraleigh
Hair ig: haironfirebyphoenix
Church: Word of God Fellowship in Raleigh
