“I want to contribute to the healing of the world.”
At the Foundation, we know Heide as articulate, dependable, and passionate about fighting lupus.
But perhaps the best word to describe her is resilient.
She’s not only dealt with her own battles with lupus, but lost her 33-year-old brother to the disease. Now she has an even stronger determination to reach out to others, and let them know they aren’t alone.
At monthly Foundation support groups, Heide is the one who consistently tells others, “Stay strong. You can do it.”
How does this former Air Force Technical Sergeant and Brooklyn mother of two seem to manage so well?
You’ve had lupus symptoms since you were a teenager on Long Island. When were you diagnosed, and how are you doing now?
In my teens I had bouts with fatigue and sore joints. When I was first diagnosed with a lupus/collagen vascular disease in 1982, I was on active duty in the Air Force. But I never followed up.
It wasn’t until I had what felt like a heart attack at age 26—it was actually a panic attack—in a subway station in downtown Brooklyn that lupus was officially diagnosed. I’d had a few years of swollen, hot-to-the-touch joints, extreme fatigue, and hair loss. The doctors attributed these difficulties to everything from stress to allergic reactions, and the difficulties of going through a divorce.
I showed the emergency room doctor my hands, which hurt terribly, and told him how much it hurt to walk or even move. He examined me, took some blood, prescribed some non-steroidal anti-inflammatory drugs, and told me to come back in a week. When I did, he confirmed lupus.
These days, I feel OK. I still have joint pain and I get fatigued easily. But I have learned to pace myself and I can tell if my lupus is trying to flare up.
You’ve had so many hard knocks yet seem to stay so strong. What keeps you going? How do you manage to stay positive?
I basically believe God gives each one of us “crosses” to bear; my cross is lupus. I’m not discounting education, but until you walk a block (or as far as you can walk) in the steps of someone who has lupus, it is very hard to understand the pain, fatigue, depression and other symptoms of the disease. I believe God allows us to go through these experiences so that we can help others in our situation in a real—not a textbook—way.
I am also constantly reading books and articles about how others have overcome the obstacles of a chronic disease, such as Strong at the Broken Places: Voices of Illness, Chorus of Hope, by Richard Cohen (Harper Collins, 2008).
My dog, Deuce, is also a great source of inspiration. He’s an Alaskan Husky that I rescued from the animal shelter.
Raising kids is so much work. How did you manage with lupus at the same time?
It takes a village! For the first six years I lived with my grandmother and uncle in New Jersey who did everything so that I could spend what energy I did have in just hugging my kids, a girl and a boy now in their 20s.
From there to my parent’s home in Brooklyn, and my South Carolina in-laws in the summers and on school breaks, the kids were very comfortable wherever they were, and had clothes and toys. We felt like gypsies!
At a very young age the kids also knew how to call 911 to get an ambulance to the house. Then they would call my parents and tell them what was going on.
My church family was also very supportive and helped me manage my children and my situation.
All told, I did not manage raising kids without building a lot of guilt for not being able to do things like stay for my son’s football games or go to the beach or amusement parks. Professional counseling helped me to deal with these feelings.
When you do get discouraged, what do you think about to stay focused on the positive?
I try to get busy helping others, like helping to distribute food at church, or just being outdoors and meditating. Going to the support group and attending lupus seminars are also means of staying focused on the positive.
And my children are a big source of my joy and reason to stay positive. I do not want to have my negative attitudes affect them and other people around me.
You joined a clinical trial in December 2008. How did that happen?
After a hospital stay in 2008, I was so discouraged because I was not responding to any of the medicines (methotrexate, plaquenil, prednisone). Every doctor that came in to see me had a group of students. I felt like a guinea pig. I thought I was going to die.
They sent me home—and not because I was better, but because my white blood count had dropped below 1,000 and they decided it was safer for me to recuperate at home, where there was less risk of getting an infection.
I got a letter from North Shore Long Island Jewish Hospital, asking if I’d be interested in participating in a clinical trial. They explained how clinical trials are very controlled. They dispelled some of the fears and rumors I had about joining a trial.
What made you think to yourself, ‘this is the right thing to do’?
I found out that enrollment on the part of African Americans is very low. I felt that I could contribute to this cause and help change the attitude towards participation in clinical trials—let it begin with ME!
The experience in this clinical trial has been great! I have to keep a diary of symptoms and illnesses. The staff is very attentive. I get a full exam by one of the top doctors in rheumatology, Dr Richard Furie, about every two weeks!
I also get compensated for my participation. So this has helped me reduce my medical cost which I am paying very steeply for through COBRA and get top medical care at the same time.
At support groups, you always reach out to others and offer your help. What is it about helping others that feels so right to you?
It feels right because I believe that “what goes around, comes around…” I would not be able to give back did I not have the encouragement, support and assistance of others.
I want to contribute to the healing of the world. This is my way of giving back.