Sheri

How have your experiences with perimenopause impacted your day to day health?

With my sickle cell, I know what I’m dealing with, right? But with perimenopause, it’s constant. I don’t get any sleep because I’m constantly getting up to pee. And then it’s the brain fog. 

Two weeks ago, we got our car fixed on a Sunday. We missed church. We walked around and my ankles were hurting for almost a week and a half. And it just kind of scared me because I didn’t know, like, “Oh man, is this going to throw me into a crisis?” And I didn’t know if the pain wasn’t going away because I have sickle cell. 

It’s been a struggle that I’m trying to navigate. I did see my GYN on Monday and I’m just trying to navigate through it. At night it’s the worst because that’s when I get more pain and I’m just praying like, “Please don’t let this turn into a crisis.”

What did life with sickle cell look like before these new challenges?

Growing up, only me and my older brother suffered from sickle cell. He passed away in 2012. I really didn’t get sick as much as a kid like he did. At eight years old, I got hospitalized. At 16, I got hospitalized again. So that was an eight-year gap. I was getting sick in between that, but not as bad. I started having my kids at the age of 19 and kept myself in college and even worked. I even worked two jobs periodically throughout my life with kids.

I was getting sick more often when I moved to Florida in 2004. I had to learn how to navigate working—in the hospital lab—and getting sick. I was  like, “Man, I hate this illness. I’m in the hospital, I work in the hospital and have to stay here as a patient.”

You have to pick and choose your battles: don’t work and struggle. I was a single mom at that time as well. It was hard having two little girls. At 24 or 25, I met my ex-husband and we had two daughters, so then I had four kids. I was energetic, but I was getting sick and almost died. My blood count dropped and I had renal failure. I was in the ICU and it just hit me like, “Oh my gosh. I need to take better care of myself, my mental health, because this was pretty bad.”

I realized I was getting sick because of stress in my relationship. I had to make the right choice and get divorced (we get along now). I had my son years later. I praise God because I’m remarried. My husband is seven years younger than me, but my biggest advocate.

What changes have you had to make in your life to protect your health since then?

I take care of myself first. I need to have the right people in my life. Before I got remarried, I had to watch who I had in my life because I knew stress was my number one trigger. I was constantly not wanting to hurt people’s feelings. I would take on too much.

I also focus on learning and having something that’s mine: I taught myself Japanese and that helped me manage mentally. 

Two years ago, I  got more connected with God and I am now in my church. I see life differently and I feel a lot better. I look back and think, “Oh my gosh. I see why I was getting sick.”

If you could tell somebody else with sickle cell anything, what would it be?

Have faith and know your triggers. Don’t be afraid to say no if you don’t want to do something. 

And don’t be afraid to ask for help. There were a few people I knew (with sickle cell) who I didn’t want to be around because of their attitudes. They would just always be angry. And I understand having sickle cell, being in pain can sometimes do that, but it’s okay to reach out and ask for help.

What are ways you would cope with that in terms of the difficulties of the bias or the misconceptions and even being a caregiver, making sure you have time for yourself, taking care of yourself as well? So what are ways that you cope with that or different strategies that you use?

Have patience, be compassionate and educate yourself. If you’re dealing with somebody or you’re with somebody that has sickle cell or you’re curious about what’s going on, ask them. 

I educated my whole church. I sent out a long two, almost like a whole page of like, “Hey, if you don’t see me at service, this is why.” Because I had a few people telling me like, “Oh, I went to the chiropractor and I did a parasite cleansing and this is what helped me.”

I’m like, “Okay, but thank you for that information, but that won’t help me. That’s not going to cure my sickle cell.” And I had to educate people because it was kind of getting to me where I’m like, “Man, let me let my congregation know like, ‘Hey, this is what sickle cell is and I appreciate what helped you guys who don’t have sickle cell, but that won’t help me.'”

What treatments do you want to educate others more about?

I’m seeing a stem cell transplant doctor. There’s a big war within the sickle cell community about gene therapy and stem cell and bone marrow. Some people are against it and they’re making people afraid. So I speak out and say, “Listen, do your own research. Educate yourself. Don’t let others who don’t want this or who are afraid make you feel like you’re making the wrong decision.”

What’s the road to this stem cell treatment looked like for you?

When I was 18, I saw a newspaper article of a boy in Georgia, excuse me, who was way younger than me and he was cured. I think they used bone marrow. I looked at that headline and I was like, “That is going to be me one day. I don’t care. It’s going to be me.” 

I stayed on top of any new research in stem cells and now gene therapy. I saw this doctor to get to know him. I found out he was doing gene therapy for adults. Even though Casgevy is approved for ages two and up, a lot of hospitals won’t do it on people over the age of 40. 

He said that he thought I was healthy and would be able to handle the intense chemotherapy for gene therapy, but also let me know that there’s now better medication for stem cell transplants. Stem cell treatment can happen now, but I may have to wait a year for gene therapy. I have a sister who doesn’t have sickle cell trait or the disease, a little brother that has a trait, and my five kids—I can have them tested as possible donors. 

He told me to think about it. One reason I was leaning towards gene therapy was because I know they use your own stem cells. But they use the type and amount of chemotherapy they do because gene therapy is so new. Stem cell therapy has been around for a while, so doctors know more of what to look out for. Gene therapy is also not available for adults in my state, Florida, at this hospital. 

So I’ve made up my mind and I’m like, “You know what? I have faith. I want to do stem cell.”

The aftermath is like being reborn again, so your immune system can be compromised. But there are ways to protect yourself. My mom is a bit scared, but  I have faith. I have asked God, “If this is not me, close that door. And if it is, I trust you.” I’ve done my research. I’m excited.

Is there something that you're looking forward to kind of in the rest of the year outside of gene therapy that you're really excited about?

Me and my husband are in the works of buying our first home. When I say first home, we’re going to buy a home and that’s it. This is the house where my kids will bring their kids. My oldest is 25 and I don’t have grandkids yet, but that’s where we’re at.