A day in my life as a person managing Cushing’s disease
Keeping my symptoms in check requires an intensive care regimen
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 at 8 a.m. and start my day by stepping on the scale. I’m on Mounjaro (tirzepatide), a medication that balances my blood sugar and helps me lose weight. I gained 120 pounds because of Cushing’s disease, so it’s a relief to see the scale numbers moving in the other direction.
After completing my morning skin-care routine to combat my acne, I sit at my computer to work my part-time job. In the morning, my stomach tends to hurt pretty badly, so I usually just have water or tea. In general, morning is the hardest time for me. I often get headaches, my legs hurt, and even though my job requires me to stare at a computer screen, my visual problems make the words blur together.
Around 11:30, I take my first batch of pills — a mix of my prescribed spironolactone and supplements I need, such as fish oil, iron, and milk thistle. I try to stomach some food and work to keep my pills down. When I can’t stomach anything, I have to delay taking my meds, which can delay my whole day.
I take my second round of pills at 2:30 p.m. I follow this with more tea or, if I’m feeling brave, a cup of coffee.
I finish work around 4, and usually at that point I’m exhausted. I take some time to lie down and deal with whatever is hurting me. For example, I might use compression boots to help with my leg pain, or a heated wrist guard to help with my wrist pain.
I try to do something for myself every day. I’ll work on my novel, paint a picture, go for a walk, read a book, anything. When I wasn’t doing these things, my days would blend together and I’d lose all sense of time. The practice keeps me sane.
Throughout the afternoon, I check on whatever cuts I might have. Cushing’s disease can cause slow-healing wounds, so my body is usually covered in Neosporin and Band-Aids. I also usually end up with a heated blanket around me, since I’ve been feeling especially cold over the past few months. Half of that is winter, and half of that is my medications.
I plan all of my doctor appointments for the afternoon. I meet with my gynecologist, endocrinologist, primary care doctor, and therapist at least once every three months. I also have to get bloodwork and scans done multiple times a year. Usually I’ll have a friend or family member take me to these appointments so I don’t have to be alone.
My husband comes home around 5, and we go through a list of every food we have in our apartment so I can find something that isn’t making me nauseous today. Lately, it’s been toast or plain rice. We try out a new show, and I do my daily stretches.
I have to take two doses of ketoconazole at 8 and 10 p.m. The second dose makes me pretty tired, so I tend to get ready for bed between doses. I make sure to do my skin-care routine whenever I can, and I throw my curly hair up in a bun above my head. I also apply hair oils, which help my hair grow after the extreme hair loss I experienced early this year.
After my 10 p.m. pills, I prep for any problems I could have overnight. I keep my migraine cap in a tiny fridge next to my bed. I have a trash can beside my bed since I’ve been throwing up at night lately. I keep water next to my pain medication.
Then, I usually try to read before going to bed. Cushing’s disease can cause extreme insomnia, but I do my best to fall asleep. I usually listen to some white noise and eventually drift off …
Only to do it all over again the next day.
What do your days with Cushing’s disease look like? Comment below! 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.
Hi Noura - I feel for you. So pleased acknowledged early. Took 16yrs for my Drs to name my problem. 2015 had first op - so in the last 8yrs have lost 33kilos (134-101) So if I make the next 8yrs shd get to my weight of 70K in 2000 - yea plus memory fades, body misbehaving, weak muscles hehe Hi from Lucie in Kiwiland :)
Thank you so so much for sharing!! I'm so sorry you've been through all that Lucie. It's so much! <3