Having lived with sarcoidosis for 31 years, talk show host Dorothea Howard uses her experiences to help others.
In 1984, when I was 26 years old, I started feeling short of breath, fatigued, had constant body aches and a dry, persistent cough. I thought I had the flu. After a month or so I noticed the dry cough wasn’t going away and it dawned on me how much weight I had lost. It was drastic. That’s what prompted me to go to a doctor. I just didn’t feel right.
Following a chest X-ray, I was admitted to the hospital. The doctor said my symptoms were pointing to lymphoma or tuberculosis. I remember crying for the next five days because I thought I had cancer. The doctors ran more tests and finally one of the physicians suggested a biopsy of my lymph nodes. I was terrified. When the pathology results came back, the doctor told me the good news was that I didn’t have lymphoma, but the bad news was that I had sarcoidosis and there’s no cure.
Back then very little information existed about the disease. All doctors knew to do was prescribe high dosages of medication to treat the inflammation. At that time, my liver and my spleen were double their normal size. I was really ill. Over time my spleen and liver returned to normal, but my lungs were, and still are, scarred badly.
As the years went on my body went in and out of remission. At times I had major flare-ups. In 1987 I was seven months pregnant with my second daughter and my left lung collapsed. The procedure to correct it was frightening and painful. Doctors worried I might have to have emergency surgery to deliver my baby early, but through the grace of God we came out of it fine. I had a normal delivery and my daughter will be 28 years old in November.
In 2004 it happened again; my right lung collapsed. I was driving one day and I felt this pressure in my chest. I didn’t know what was going on. When I got home I laid down to rest and the minute I put my head on the pillow it felt like my breath was cutting off; that’s when I knew what was happening and went to the hospital. My blood pressure was at stroke level. Doctors inflated my lung and I went through the whole process again.
Around 2006 I realized I wanted to help other people with sarcoidosis. I wanted to make sure no one had to go through what I went through — especially not having anyone to talk to about the illness and understand.
I felt others needed to be educated about the disease; they needed a voice — a patient’s voice. So, I quickly became an advocate for sarcoidosis. I feel that God uses my experiences and my voice to help people. I have always believed in being positive, that’s what has gotten me through my struggles with the disease. I want to be that voice to remind people that you have to change the way you think in order to cope with anything, whether it’s an illness, or something else.
I started hosting conferences that included sarcoidosis information and I started a support group, often talking to people over the phone if they couldn’t attend meetings in person. People learn a lot from hearing about other people’s experiences and sharing information.
In 2011 I also wrote a book about my experiences. I have been through a lot of pain with this illness, but I’ve still managed to cope with it and come out with a positive mindset.
A few years later I pitched the idea for a talk show, “Let’s Talk Sarcoidosis,” to a local television network. I wanted to bring on medical professionals and people living with the disease to help educate the community and viewers all over the world. In May I was named “Best New Talk Show Host” by Bowie Community Media Corporation. When I won the award it really confirmed that the show was needed. I felt the gratification. It airs in Prince George’s County, Maryland and parts of Washington, D.C., but we also share it on YouTube. My main goal is to teach people to be proactive in their own health care.
I know that I live with a potentially fatal illness, and I wake up every morning praying. Some people pray for all kinds of things, but I pray for breath, literally. I make sure that I exercise three to four times a week, whether it’s walking or resistance training, and I eat properly. I am very proactive in my own health. I choose to accept what I have and go out there and make a difference. So when I wake up in the morning, I ask myself, “What can I do today to make me a better person and to help someone else?” That’s my attitude. I stay positive.
I recently became a grandmother for the first time so when I look in my granddaughter’s face, I know I need to stay healthy. She’s my inspiration. It reminds me that no day is promised and I have to contribute to my own well-being.
Everyone, especially people with a chronic illness, should try to be in positive environments. Anyone or anything that’s going to give me negative energy, I don’t want to be around it. I’ve learned that the hard way. I can feel my body respond negatively to stress and negative situations, and I don’t apologize for wanting to live a healthy lifestyle.
Clinically, on paper, my pulmonary tests aren’t the greatest. I struggle when it’s humid outside or extremely cold; it causes shortness of breath. I still have my struggles, and I have days when my entire body aches, but because I’m in tune with my body, I don’t overexert myself. I’ve learned how to cope.
My advice for those who are newly diagnosed is to breathe. Take deep breaths; use a breathing exercise. You have to tune into your body. Then think to yourself: “So I have this disease, now what? What will I do about it?” Once those questions are answered, people start to realize they need to help themselves. Why complain? Be grateful and thankful that you’re alive because some people didn’t wake up this morning. Change the way you think about life. Attitude has a lot to do with it. I can mope and be stressed and sick, or I can do something nice.
I choose to do something nice.
My experiences with sarcoidosis have taught me to be more caring; to be empathetic and sympathetic to others and really listen. Sometimes that’s all it takes to help another person. It’s important to be heard.
In the 31 years I have been battling this illness, I’ve been through a lot, but it helps me to help others. It keeps me going.
Watch episodes of Howard’s talk show, “Let’s Talk Sarcoidosis,” on YouTube: http://bit.ly/sarcoidosistalk
For more information on the sarcoidosis group meetings and health care conferences hosted by Howard, email firstname.lastname@example.org