Some people might describe me as the type of person who regularly says no to something before coming around to a yes. This might apply to support groups, as I usually don’t join them. Don’t get me wrong, I’m glad they exist for people with rare diseases like…
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“I have to shower immediately. I’ll get all of these EKG lead stickers off of me and erase the hospital.” That was the first thought that came to my mind after a hypoxic, or low-oxygen, episode sent me to the hospital the other weekend. Showering after a hospitalization…
The world is full of opinions, personalities, and attitudes. On my first day of nursing school, our dean told us to treat others as we’d treat our family or loved ones. How would we want nurses to treat them? This stuck with me, as I’ve tried to deal with others…
It’s officially spring! Flowers bloom, rain falls, and allergies flare as we begin to emerge from our collective hibernation. Before formally springing forward, I took a vacation to Florida where I spent a week visiting different amusement parks, and my comfort level with asking for and using disability accommodations reached…
Second in a series. Read part one. According to the Online Etymology Dictionary, “emergency” is derived from the Latin word “emergere,” which means to come forth, to rise up and out. That is what our brave emergency responders do. They rise up, emerge, and help patients and caregivers…
A rare disease like pulmonary hypertension (PH) is challenging enough to manage. Add other coexisting conditions and it gets even more complicated. I have several coexisting conditions, but my stage 3 chronic kidney disease (CKD) is the most difficult to manage alongside my PH. I must be organized…
First in a series. The rare disease community has an abundance of compliant patients and proficient caregivers. We do our best to avoid serious medical emergencies but are wise enough to know that we must also prepare for them. Important healthcare information and prescription lists are diligently maintained…
Mental health stigma can feel sharp, like a splinter in your thumb or a paper cut. The stigma is so powerful that it can bar those newly diagnosed with rare diseases or chronic illnesses from seeking out the treatment they might need. After my pulmonary hypertension (PH) diagnosis in…
If you can do the following things simultaneously then you are rare! Speak up and listen. Learn while you teach. Trust but also question. Be empathetic and persuasive, serious and lighthearted, gentle and strong. Also be organized and spontaneous. Take care of yourself and put others first. Give in but…
“I often wished that more people understood the invisible side of things. Even the people who seemed to understand, didn’t really.” ― co-author Jennifer Starzec, “Determination” Having pulmonary hypertension (PH) can be incredibly isolating. Because the disease is rare, finding others who understand and can relate…
Physical, emotional, and mental exhaustion are common symptoms of pulmonary hypertension (PH) and caregiver burnout. Many of us will keep packing on the fatigue until that snowball gets harder and harder to push. All too often, we’ll stop only when the weight of it rolls back and crushes…
In the spring of 1999, at the age of 3, I developed a hoarse voice. My mother thought that maybe I had a cold, so she brought me to my pediatrician for a checkup, expecting a prescription for antibiotics at most. This was the first of many misunderstandings about my…
