A Slight Change In Pace – A Sarcoidosis Story

Betty Washington describes the impact of sarcoidosis and pulmonary hypertension on her life—and how she stays strong by surrounding herself with positivity.

I worked for 33 years as a police officer, beginning in 1975. For the last 18 of those years, I was a police dispatcher. That was an exciting job. Police dispatchers screen calls that come into the station for priority, then they relay information between officers and emergency responders in the field. People heard me but never saw me. I had to be aware, alert, and ready to help at any moment. It was a great job because I love to help people.

Betty Washington: “I refuse to give up. There’s a lesson to be learned about any situation.”

When Diagnosed With Sarcoidosis?

In 1991, I was diagnosed with sarcoidosis, an autoimmune disease that often affects the lungs and skin. It was a mild case, but it kind of kept progressing over the years. Then I started getting a little short of breath and it just kept getting worse, until one day a doctor said, “Betty if you don’t retire you’ll be dead in two years.”

So I put the paperwork in and retired on April 8, 2008.

About four years ago I was in the hospital for something related to sarcoidosis. And they took a test and found out that my blood pressure was high in my lungs and there were some blood clots in my blood vessels there. So that’s when I learned I had pulmonary hypertension (PH) too, as a complication of the sarcoidosis.

When I was first diagnosed I was in shock. I didn’t know what it meant. I’ve learned I can still pretty much live a normal life. I use oxygen now and I’m on blood thinners and other medications. I also really changed my diet. And I go to an exercise class for people with respiratory problems on Tuesdays and Thursdays. I really notice the difference. Some days I have more energy than my body can deal with. And sometimes I’m up all night and exhausted all day—but overall I’m managing well.

Does PH Change Your Life?

Having PH has changed my life some. I used to be a fast walker. I used to be like the roadrunner. At work, I had a partner who didn’t walk very fast and I often thought, “Can you walk any slower?” Now I’m the slow walker. I’ve learned I need to pace myself. I’m aware of my limitations. I can handle things better when I’m at a slower pace. I still do all the same things for myself, just slower.

I am sensitive to any chemicals. I avoid smoking especially—smoking areas and certain friends’ houses.

Through the exercise class, I’ve learned to breathe correctly to sustain oxygen. It works pretty well for me. I love the women who teach it. It’s very invigorating. Between the oxygen, medication, diet, and exercise, I’ve gotten a lot better. And I believe I will keep getting better.

Wearing oxygen made me a little self-conscious at first. I learned tanks are quieter to carry in public than machines, so I do that. But I think it’s important to remember, even in the face of PH, you are still living in this world, so you have to take ownership of your life. Sometimes I have to give myself a little talk to remind myself I’m doing well—I cannot complain.

People have actually stopped me to thank me for wearing the oxygen in public—a lot of people are too embarrassed to do so. Seeing me with oxygen affirms them. I really believe you still can function with PH, no matter what you might need to help you.

I have two daughters and five grandchildren and one great-grandchild, all in Texas. I’d really love to take a trip down to see them. It’s probably not something I can do on my own, so I’m hoping to find someone willing to go along.

I live by myself, but I’m very glad to also have lots of families right around me. They are all ready to help out when I need it. They check in with me and some will even come to stay with me if I’m not well. There’s a crew—my cousins, my siblings—that always show right up when I’m admitted to the hospital. I feel very supported.

“You will have those ‘why me?’ times—I sure did. But then I thought, ‘Why not me?’”

Do You Have Advice For Newly With PH?

My advice to people newly diagnosed with PH is to stay calm. It’s not the end of the world. It’s your new normal. I take a break if I get short of breath and then keep ongoing. I was dealt this. Unfortunately, you can’t just reject it. So get a stronghold of your self-worth. You will be all right.

Also, spend time around other people. I was part of a sarcoidosis support group for many years until it disbanded. Now I’m looking for a PH support group. I’ve gotten information about one around me I’m going to try out. It’s a great way to meet people having a similar experience. You’ll learn it’s not a death sentence. It’s not the end of the world—especially if you have a positive attitude. You will have those “why me?” times, I sure did. But then I thought, “Why not me?”

I refuse to give up. There’s a lesson to be learned about any situation. Life is not a bed of roses. I was very healthy until my first diagnosis. Who’s to say who should or shouldn’t get sick? Once you’re dealt with it, deal with it. You can’t wish it away—you can just pray.

I’ve learned a lot about PH just by sitting and listening to my body. I’ve learned a lot from medical programs and self-education. I try things out and if they don’t work I learn what I have to do differently. If they have programs out there that can help you in any way, please do them. The main thing is don’t give up hope—or love.

People have said negative things to me. When they hear about my condition they say things like, I could never live that way. I respond by saying, “I’m going to live a long, long, healthy, and prosperous life.”

Keep positive people around you. You don’t need any negative people around you. From when I was first diagnosed with sarcoidosis, a lot of my relationships have grown closer.

I have a friend who takes me everywhere I need to go. He even brought a stepping stool to help me get into his truck. He’s very protective of me. My family is the same way.

My friends send anyone with similar health issues my direction. They know I enjoy talking and helping. I just tell them, call me anytime. I just get good feelings when I help others.

I’ll never forget, in 1996 I had a sarcoidosis attack. I had been coughing up blood for a while, but it happened once while I was at work. I kept coughing and coughing and just felt off. So I decided to visit the hospital, thinking I’d be back to work before the day was out.

They had to give me a blood transfusion and they had me on a ventilator. I was dangerously low on blood. They induced a coma and called my daughters. When I came out of the coma and started to recover, the doctor asked me if I knew how sick I had been. “You were at death’s door,” he said.

That’s why I say you don’t take anything for granted. Do what you love and show people that you love them. One word can change someone’s whole attitude. If I meet someone who seems to be in a tough place, I’ll send them a card. I just like people to be happy. And I want them to know they’re not on their own.

Final Words

Having PH and sarcoidosis has taught me to evaluate my life and be careful with my body, and appreciate what I have. If someone looks like they are fine, that doesn’t mean they are. I believe everyone has some type of challenge and I’ve learned not to judge people because you can never know what anyone else is going through.