In last week’s column, I shared how the Make-A-Wish Foundation granted my son Cullen’s prodigious wish to meet President George W. Bush in 2008. To be on the receiving end of this amazing nonprofit organization is extraordinary. The foundation creates adventures that far exceed expectations. To be on the…
Columns
Living in the moment feels like an impossible feat while managing a chronic illness. It is hard to keep my mind on the present when so much of my energy is spent planning future appointments, scheduling upcoming tests and procedures, and waiting to hear about previous…
My Free Advice to PH Newcomers
Nowadays, we pay for just about anything imaginable. But today is your lucky day! I’m offering free advice to those of you new to pulmonary hypertension (PH). Those who are “well-seasoned” may learn a few things, too. When I sat down to write this column, I thought back to my…
In last week’s column, I wrote about the challenges of making time for rest. This week, I want to address another significant lifestyle adjustment I’ve made since my diagnosis: my diet. A low-salt diet is recommended for those with pulmonary hypertension. Unfortunately, all of my favorite foods…
In 2008, my 8-year-old son was diagnosed with pulmonary hypertension (PH). Being told that Cullen had an incurable, life-threatening illness was traumatic. It was impossible to imagine that there would be happy days following that news. That year, two wish granters from the Make-A-Wish Foundation visited Cullen at home.
A few weeks ago, I wrote about planning happy moments amid the storms. I shared my excitement about a planned trip to San Diego with my husband. The city, my “little piece of heaven,” is one of my favorite places to be. Maybe the place is special to me…
The Girl with the Turtle Tattoo
Almost every time I am at the hospital, someone asks about my wrist tattoo. It is in a spot that not everyone can see, but is noticeable when I turn my wrist so nurses or doctors can insert an IV. I am often asked what it…
When a person is diagnosed with a serious condition like pulmonary hypertension (PH), they must alter their lifestyle. One of my biggest challenges has been learning to take it easy. I like to keep busy, and I tend to get a bit glum if I lie in bed all day…
My inner child awakens every fall. As the foliage starts to change into its glorious colors, I go to work decorating my home. And while sipping pumpkin spice latte, I think about what costume I will wear to this year’s party. On Halloween, you will find me on my porch,…
Traveling by plane can be stressful for anyone. Flying with pulmonary hypertension (PH) and other disabilities adds another dimension of stress and anxiety. My husband and I recently flew from Houston to San Diego. I was stoked about this trip and had been looking forward to it for months. My…
“Just go take a nap.” That’s the response I often receive when I tell someone I’m feeling really tired. Many people don’t realize that the degree of exhaustion I experience goes beyond what a nap can resolve. I wish I could crawl into my…
Holding down a job when you have a chronic illness can be really tricky. First, there’s the time you’ll need off for appointments. Secondly, there’s the fact that you’ll need more sick days than the average Joe. This can make going after your dream job seem impossible. I was…
Recent Posts
- Guest Voice: A mother’s strength in living with pulmonary hypertension
- Wrist sensors reveal physical activity gaps for children with PH in study
- I’m learning how to live fully, not just survive, with pulmonary hypertension
- First patient enrolled in Phase 3 trial of PAH treatment IKT-001
- Living with chronic pain feels like climbing an endless mountain
