More Than a Spectator: Living My “New Normal” With PH

By Tami Arnold

Most people don’t realize I’m sick. It’s not something you could guess by looking at me.

When I was diagnosed with PH in 2008, I really didn’t think it was that big of a deal or understand how it would change my life. Serious illness has always been something I’ve dealt with. I have a PTEN gene mutation that makes me more at risk for certain types of cancer (I’m a three-time cancer survivor) and I also have pelvic arteriovenous malformations that must be embolized from time to time to reduce the pain. I was in the hospital after one of these procedures when I sensed that something else just wasn’t right. My medical care team ran a lot of tests, and I was diagnosed with pulmonary hypertension and right heart failure within a few days.

Looking back, I wasn’t even thinking of the possibility of starting over again with such a serious, life-changing diagnosis at age 48. I worked at a women’s shelter, and I was actually looking forward to getting out of the hospital so I could make it to work on my weekend shift. I was in my thirties with kids when I decided to start over by going to school for social work, and I didn’t want to have to quit a job I loved to deal with major illness. But my diagnosis ultimately caused me to have to leave the workplace on disability. Faced with the tough choice about what to do with my life, and unable to return to the workplace, I just had to start thinking about my “new normal” as my retirement. I asked myself, “what do I want to do in my retirement?”

The first thing I did was join a local art league. We met every few weeks for classes and to work with other artists in the area. Soon I was working in pastels, which I really took to. At one of my first shows, my artwork was selected Best in Show! More important, I was able to connect with other people and feel good about what I was doing. The art league provided a sense of community, but not necessarily from people who understood my life with PH. When I’m having a bad day, I use that as a way to tell my fellow artists about PH and explain what it means to live with an illness that people can’t necessarily see. Awareness is so important. Although I’m treated for PH by a specialist, I even had to explain PH to my primary care doctor!

I realized from my time in the art league that I wouldn’t have been able to make friends and have the experience of being in art shows if I didn’t make it happen. I couldn’t just be a spectator on my life. That’s when I started to advocate for health care issues that are important to me. I began tweeting, emailing and calling to raise awareness for what people with PH face in their day-to-day lives. I was starting to find more and more things that I could do while living with my disability. I started connecting with other people living with PH online, and signed up to attend a PHA on the Road event. This was a leap of faith, because my first few experiences at a support group for my illness just weren’t right for me. I’m glad I took the chance, because PHA on the Road sent me on a new path.

Some of the other attendees at PHA on the Road encouraged me to start my own support group, rather than sitting around being upset that I didn’t feel like I was part of a local PH community. I’ll never forget their kind words of encouragement. And the PHA staff told me about the training and support that they offer to support group leaders.

It may sound like a contradiction, but one of the things I loved most about working in a women’s shelter was leading the support group — now I’m nervous about hosting a PH support meeting! There’s a lot to think of – logistics, how many people will come, will they come back, speakers, etc. But I’m taking those first steps and excited about where the next chapter in my PH journey will go.

Tami Arnold is a three-time cancer survivor and also lives with pulmonary hypertension. Follow her on Twitter at https://twitter.com/tamiarnold1