The internet has proven to be one of the most fundamental tools I have utilized while navigating my Cushing’s disease journey. My body felt off, and I didn’t understand why. In the most traditional fashion, I presented my symptoms to many different doctors, who all brushed me off.
As of this writing, I’m preparing to travel from New York to Michigan to visit my brother. It’s my first time flying in over a year, and I’m a little nervous. Traveling with a chronic illness like Cushing’s disease can be immensely overwhelming, as it’s very different from traveling…
For Cushing’s disease patients with a pituitary tumor, transsphenoidal surgery can help them achieve remission. But as with many other diseases, there’s a chance of recurrence. Surgical remission rates currently range from 65% to 85%, which is a large enough window to cause fear about recurrent…
I wake up around 7:30 a.m. to the sound of my alarms. I snooze them one, two, three times. I turn off the humidifier that sits by my bed to counter the dryness that’s been leaving me with bleeding lips and peeling skin. I finally drag myself out of bed…
Cushing’s is a fickle disease. There are days when I can walk without my wheelchair, grab dinner with a friend, and make my way home safely without a problem. There are also days when I can’t move 5 feet without my wheelchair, have night blindness, and need…
I’ve been a social worker since 2018. Throughout this journey, I’ve found that working with a therapist was imperative for me. The social work field is both turbulent and relentless at times, and therapy helped me prevent burnout in both my personal and professional life. Yet I don’t think…
It’s happening again. I’m at a social event, and I start to feel it. My head hurts. My vision blurs. I begin to dissociate, feeling myself falling away from where I am. I try so hard to focus, to pay attention to the blurring swirls in front of me telling…
Having a chronic illness is hard in so many ways. It’s hard on your body, it’s hard on your psyche, it’s hard on your life, and it’s hard on your caregiver. As much as I respect, trust, and love my caregiver for all he’s done for me, I have…
Much of my journey with Cushing’s disease has involved sharing my treatment options and choices with others in the community. This is largely because I had so much difficulty deciding on a treatment path. Thoughts swirled in my mind constantly. What if I chose the wrong option…
I’m not sure if this is a universal sentiment in the chronically ill community, but it seems like every time I have a doctor appointment, it consumes my entire day. I’ll sit at the computer, waiting for the virtual appointment to start, knowing that it won’t come for several more…
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