There’s no state of equilibrium with active Cushing’s disease

I crave the summer and often find myself thinking of the waves — the ups and downs, the gorgeous sun hitting my face as the water moves high and then low, the beautiful, salty smell filling my nose.

This winter, my health, compromised by my Cushing’s disease, has been an absolute mess. My periods are showing up every two weeks, I have a swollen shoulder and raised lymph nodes in my neck, my white blood count is 3,000 cells per microliter higher than a healthy person’s, and if I don’t nap at least once a day, I faint. To say it’s been frustrating would be an understatement; I’m practically pulling out my hair.

At first, I thought something new was wrong. I’d been so good for so long: I was sleeping, I was productive, I was happy. I was working out three times a week, meeting up with my friends, and even upping my supplement intake. I felt healthy.

To be safe, I reached out to my primary care doctor, who sent me to another primary, who had me get scans. After a stressful few days and a decent amount of money, they found that the reason everything was swelling was because I had a high white blood count. My lymph nodes were working overtime to clear out the extra blood.

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I was referred to a new hematologist and have an appointment coming up, but I bet I’ll hear the same thing my last hematologist told me: It’s natural(ish) inflammation from having a chronic illness.

So what changed? What happened that made my body turn on me, that is making all of these problems happen now? If I take a new supplement or change a medication, would I go back to my normal?

My reminder, however frustrating

These winter woes have been a bit of a rude awakening. I’d gaslit myself into thinking I’d reached some state of equilibrium, that if I took my medication, everything would be OK. And I’m not wrong: Things are OK. But I’ll never see an absence of illness. That’s why I get checked and have blood work done every three months.

It’s not like I thought I was illness-free, but I thought I wouldn’t have to worry about my health for a while. I was hoping my checkups would reveal that everything was fine. And if I’m being honest with myself, I’m frustrated. It absolutely sucks to feel like my health is never under control. I’m sick of napping, I’m angry that my body hurts, and I want to scream every time I faint.

The one thing I should keep in mind is that it’s not my fault. I can do everything right, yet my body can just be tired. Or maybe it’s gotten too used to a medication. There are so many unknowns, and at times they can feel overwhelming.

Illnesses are exactly like the ocean that I miss so much: They’ll always have waves. I guess I have to start learning to enjoy the moments of calm before the next one hits.

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.