In the midst of a Cushing’s flare-up, I feel like I’m drowning
Battling severe symptoms from a flare, a columnist holds on for better days
I am struggling right now due to a rough Cushing’s disease flare-up. That’s been clear in some of my recent columns and to those who are close to me. While I hope for better days, it’s not easy.
I should’ve seen the signs as soon as I started feeling hopeless. Usually, that’s one of the first indications that I need to cancel activities and rest. But I didn’t catch it this time. Instead, the hopelessness overtook me like a wave, pulling me under again and again. When I finally managed to catch a breath, it was too late.
How it started
I woke up early last Sunday morning with a bad feeling. I barely made it to the bathroom before I began violently vomiting. I spent the next two hours curled up in the bathtub with a garbage can wrapped in my arms. No matter how many times I vomited, I didn’t feel any better. My stomach churned and knotted. Something was wrong.
Since then, keeping food down has been impossible. I’ve managed to drink about half of a smoothie in a few days. I’ve lost 6 pounds and can barely swallow my medication without it making its way back up.
The pain is the worst part. The headaches are so severe that I’ve had to lock myself in my bedroom three or four times a day with a cold compress on my forehead. I avoid screens as much as I can. Desperate for a mental reprieve, I read my newest fantasy book series until my eyes blur the words and my wrists can no longer hold up the book.
How it’s going
It was no surprise when halfway through the week, my blood test results came back all over the place. Even though I was taking several doses of medication to lower my cortisol levels, they were still high. My adrenocorticotropic hormone levels were through the roof, and every lab result related to my liver was very high.
Cushing’s disease flare-ups like these take everything from me. I second-guess myself and my actions. I cancel plans and find myself alone and isolated from even those who are closest to me. I’m treading water and running out of strength. I feel lost and broken.
How it will end
This, too, shall pass. I’m listening to my body and giving it everything it needs. If that includes isolation, so be it. If it means taking time to myself and turning off my phone, that’s what I’m going to do.
I think there are a lot of negative reactions to this strategy, but I see things differently. I’m putting myself and my body first. As a chronically ill person, I don’t have the luxury of ignoring these signs.
As hard as it may be, chronic illness is a part of me. This darkness and pain make me who I am. I trust my body and I will not drown.
I know the tides will eventually calm down and I’ll find myself back on land again. I know I won’t feel like this forever, and I’ve been through it before. I’ve taught myself how to swim.
Take care of yourselves, friends. You can also follow my journey on TikTok and YouTube.
Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Cushing’s.
About the Author
Brian Cox
I have Cushings without a reason as to what is causing it. The last year I have gone through a numerous amount of surgeries and in December I had been diagnosed with anemia. I finally got the colanoscopy and endoscopy and found no reason to any blood loss. I do not have a period, although act like I do having Cushings (a joke). I see my Hematologist next month and have my Primary and cardiologist and gastro Drs wondering why I have anemia. I have sent this article to all of them. I feel it is what is going on with my diastolic BP as well. None would listen when I told them my diastolic goes high sometimes and low and could it be related to the Cushings. They thing I am nuts. Now this could be why for the high and low diastolic readings I get. Thank you, BC
Noura Costany
I am so thrilled you have found my article to be so helpful!! Absolutely you aren't nuts. I'm wishing you luck moving forward!!!