As a 30-year-old, I can still feel out of order because of AIP attacks

Imagine being a little kid and your parent gives you a quarter for the machine at the store so you can get the shiny ball you’ve been eyeing since you arrived. You put in your money and turn the dial, waiting anxiously for that one ball. Then you open the lid — and it’s not what you were expecting. It’s a dull yellow ball that doesn’t even bounce.

Two more attempts for the shiny ball each result in disappointment. And now the machine is out of order, so you’re left with three balls that give you more sadness and pain than joy.

“This morning, like every other morning, you play eeny meeny miny moe, which symptom is going to be waiting when you lift your head off the pillow,” my husband, Daniel, says. He’s not incorrect. Just like the kid at the bouncy ball machine, I take a gamble every morning when I wake up because I live with acute intermittent porphyria (AIP).

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Instead of bouncy balls, I get fatigue, nausea, vomiting, constipation, severe abdominal pain, weakness, seizures, and forgetfulness. When I was diagnosed in 2020, I couldn’t deal with these symptoms as I can now at age 30, so any one of them would’ve knocked me out of order for the day. After over 25 hospitalizations, I’ve gotten a little tougher, you might say; but AIP can be wicked, and sometimes it doesn’t take much to keep me down for the day.

Not only does AIP put my health out of order, it also throws my life out of order. My porphyria can be triggered by alcohol, unsafe medications, fasting, hormones, and stress.

Recognizing my biggest trigger

Before I realized that my biggest trigger was my menstrual cycle, I couldn’t plan for anything, it seemed. I sometimes couldn’t work because I wasn’t dependable. I couldn’t make arrangements for holidays. Sometimes I couldn’t make any plans for the day because I never knew when an attack would hit.

Although I still had attacks caused by several factors, especially after taking the wrong medications, I did find it easier to plan after my hysterectomy, since I was no longer in the hospital once a month. After avoiding hospitalization for two years, I’m still cautious because an attack may still creep up on me without warning.

As I talked to Daniel about what I should write about this week, I remembered once, before the hysterectomy, when he and I had gone out to eat even though I didn’t feel the greatest. While eating, I had an attack and began having seizures at the restaurant. That took me completely out of order and put me in the hospital for four days because of my menstrual cycle.

Keep in mind that I took about six months to see the correlation between my period and my porphyria attacks. Once I discovered it, I was able to plan each month to be sick or in the hospital. Before my cycle began, I’d have a hospital bag packed and ready to go because I already knew that I’d be out of order for at least four days to receive heme treatments.

Although I no longer have a menstrual cycle and haven’t been hospitalized for a while, I’m still in pain and nauseous every day when I wake up. I just have to push to stay in order and be a porphyria warrior!

Note: Porphyria 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 Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.