Sometimes I think my emotions are too much to handle. I find myself wondering if I am overreacting or feeling things too strongly. However, chronic illness has taught me that I need to feel my emotions. I can’t bottle them up, hide…
Year-round, the parent company of this website, Bionews Services, strives to provide pertinent and updated information about complex, rare diseases. Staying current with medical research is a key component of effective self-advocacy, but personal experience is also a gold mine of valuable information and inspiration. Bionews recognizes this by…
For most of my life, my illnesses were invisible. I could walk into a public place and not expect sideways glances or stares. I didn’t feel like a fish out of water. The only difference between my friends and me was the scar down the middle of my…
Recently, it seems that all we hear about is the coronavirus. Between that and the cold or flu that many are dealing with, I must take preventive measures. But how many measures can I take while still living a somewhat normal life? I’ve noticed that others tend to go…
National Donor Day in the U.S. was on Feb. 14. However, every day when I look at my son, I feel inspired to raise awareness about the lifesaving benefits of organ, eye, and tissue donation. And what better way to spread awareness is there than sharing Cullen’s transplant story?…
Today is Valentine’s Day, y’all. I know that some of you are eating fancy chocolates and sipping wine, all the while blowing kisses to your love. But for me, Valentine’s Day brings an outpouring of mixed emotions. Fifteen years ago, my life was dismantled in more ways than I can…
“Can you keep it down? There are other sick people here.” These were the words spoken to me in an emergency room last weekend. I was crying and voicing my pain as I lay on an uncomfortable hospital bed. I had oxygen in my nose, a…
Pulmonary hypertension (PH) is an incurable, life-threatening disease. This reality is a gaping wound that patients and loved ones try to cover and protect with hope. But at some point, we are all forced to peek under the bandage. What do we do when PH starts progressing, treatments stop helping,…
If you saw me you would probably notice my bright blue eyes (thanks, Pawpaw) or my huge smile. You might not realize that behind the smile, I am hiding something. I have been hiding the chronic pain that has been affecting me for a long time. It’s not that I’m…
A couple of weeks ago, I listened with tears in my eyes as Demi Lovato sang her heart out at the Grammy Awards. I can’t relate to her addiction, but I can relate to the pain in her heart. Recently, I have felt depressed…
Second in a series. Read part one. Grief and guilt are not easy to express or explain. It has been five years since my son’s heart and double-lung transplant after a lengthy battle with pulmonary hypertension (PH). I am thankful and overjoyed that he has continued to push through…
We don’t always have a choice about what life throws our way. But our response to challenges is something we can control. Living with pulmonary hypertension (PH), I don’t always have control over my body. With that lack of control comes frustration. However, I’ve found some coping strategies that improve…
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