Valeciea C. Baker's Story

What were the steps leading up to your diagnosis?

I was diagnosed with SLE in 2007, but I know from my past issues that I have had lupus since I was 14 (1984). I remember as a teen always being in pain, feel fatigue, and other health issues.

I was under so much stress in 2007 when my grandmother passed away. After she passed, I started having sores and skin blemishes. I was 38 years old, and I knew it wasn't acne. I went to my dermatologist, and as I was walking through the doctor's door it was like once again God was warning me. I could hear him say, "You have lupus."

Blood work was taken and a biopsy done in my ear. A few days later there it was–I was diagnosed with lupus. Now mind you I already had Hepatitis C (from a blood transfusion with my oldest son), between the two conditions, no one wanted to treat me with the medications they usually used.

I was told if they treated my lupus, within three months my liver would shut down or if they treated the Hepatitis C, then my autoimmune system will attack itself and I would probably be dead within three months. So they just did nothing.

On November 19th, 2008, I had a massive heart attack. If it had not been for my 19-year-old calling the ambulance, riding with me, talking to me and both my boys staying by my side, I wouldn’t be here.

I hated my career was over, but I’ve always been and always will be a fighter. I couldn’t be a social worker for CHFS (Kentucky) but I was at the end of my undergraduate degree, and I was going to graduate.

Ten days after my heart attack I returned to school and even though (Spalding University) discriminated against me with my BSW, I was working on a dual degree and had enough credits to graduate with my bachelors in psychology and only needed one class for my bachelors in social work.

From there on, I had so many health issues. I had sores in my head; my hair was beginning to thin, hand and feet would turn blue and sometimes I would wake up with pain in either my hands or feet.

What lifestyle changes have you needed to make?

I stopped working because most employers look at you and see a healthy outside and think you are lying about your health. There are days I can’t walk, so I have to make sure I map out how I’m going to take care of me when my husband is at work.

I know that there is more for me to do so since I can’t sit, stand or walk for long periods of time because I’m in excruciating pain all the time.

I figured out who I wanted to be and I started an online graduate degree two years ago. I plan to open my own practice as a married couple and family therapist. That way I can control my schedule, rest in between clients and show my kids and grandkids that no matter your circumstances–you can do anything you pray about and work hard at like I have.

I underwent chemotherapy in 2013 for my Hepatitis C and I’m considered cured. That treatment was also hard for my lupus and other lupus-related illnesses. So I have been in and out of the hospitals, problem with my kidney, heart, joints, muscles, and skin just to name a few.

I have learned how to stay stress-free, the sun and UV rays are my enemies. I also research different ways I can live my life and take care of myself.

What accomplishment are you proud of?

I am most proud of being a mother and a wife. I am also proud of how I started a support group here in Louisville KY called “Let’s Talk Lupus Louisville.”

I’m proud of all my degrees and the fact that I’m not a quitter I know there is much more for me to do and I was born to help people, and that is what I’m going to do.

At one point when I couldn’t work and before I met my husband, I lost everything I had worked so hard for, but with lots of work and saving, I have now been blessed with all I need plus some and anything you put your heart and soul into.

Who has been there for you? How?

The main people that have always been here for me is my two boys, Larry and Courtney Booth; they made sure mom was alright at a very young age because I didn’t have a lot of family support. People don’t do well with what they don’t understand.

Outside of them, I have an adopted mother, Genevieve, and she has been there for every surgery and every hospitalization I’ve had over more than 20 years. She had also been there for all the good to cheer me on when nobody else was.

In 2009 I met the man of my dreams, James, and knew God had sent him to love and care for me. He didn’t care about the fact that I had all these health issues, he did his research about all my health issue and loved me through them all. We married April 22nd, 2012. That was one of the best days of my life.

As a child, my grandmother was my backbone, my nurse, and my personal cheerleader.

What's your advice to someone else living with Lupus?

Eliminate as much stress from your life because that is what causes this disease to attack us. Make sure you keep your eyes on the UV rays and dress accordingly.

Be in charge of your own care. It's important to research because a lot of physicians are clueless to this mysterious disease. Also, whatever you want to do in life–just know it’s still possible, you just might need to plan it a different way, but you can do it.

The final thing I would say is to find some support a person, or a group because people who understand are the best thing for us, especially when there are so many who don’t understand.