With AIP, even minor decisions can have a big impact on life
Post-diagnosis, I pay attention to what I eat and even what I wear
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Throughout our lives, we make daily decisions. Some are minor, like what to wear or eat, while others can significantly impact our future. For those of us living with acute intermittent porphyria (AIP), even small choices become crucial.
Beyond major decisions, such as undergoing a bilateral salpingectomy and a full hysterectomy, the most challenging choice for me over the past five and a half years has been determining when to seek treatment.
When my chronic and severe abdominal pain became unbearable, I sought answers and began treatment. I chose to take Prozac (fluoxetine) for my mood swings and continued seeking medical help when the pain persisted. I also decided to remove my Nexplanon (etonogestrel implant) to avoid additional hormones that could trigger an attack. While many women with AIP have successfully gone through childbirth, I believe my body’s extreme sensitivity to hormones would have made that journey especially risky for me.
Women without AIP may experience severe menstrual pain, but my experience was different. My pain was concentrated in the upper right quadrant of my abdomen, not my lower back or pelvic area, and was accompanied by confusion, nausea, vomiting, constipation, diarrhea, and seizures. For over six consecutive months, I spent at least four days each month in the hospital receiving treatment for these symptoms. The decision to seek hospital care each month played a major role in my survival.
Avoiding triggers
It’s important to remember that AIP and its chronic symptoms cannot be officially cured, although a liver transplant can prevent recurrent attacks. However, most attacks are treatable, and some triggers can be avoided. Common AIP triggers include alcohol, fasting, physical and emotional stress, hormones, certain medications, and smoking. Avoiding alcohol and cigarettes is crucial, though it’s not always an easy choice.
On the day I was diagnosed with porphyria, my primary care physician prescribed a high-carb diet because my blood sugar would drop unexpectedly. Eating became a difficult decision when I couldn’t keep food down, though fortunately that symptom has improved. To prevent low blood sugar and AIP attacks, I now set an alarm every two hours as a reminder to eat a snack. While it’s not always easy, I try to avoid snacks with excessive added sugars.
As I mentioned earlier, what to eat wasn’t the only simple decision that became significant for me. Wearing comfortable clothes, or keeping them nearby, became essential. Although hospital gowns were available, I preferred my own clothing. Since attacks could occur unexpectedly, not just from my menstrual cycle, I tried to stay prepared for sudden hospital visits, which became a routine part of my life. Choosing shirts that allowed easy access for PICC lines and ports made a big difference.
Deciding what activities to do has also required caution. I must be careful with outdoor exercise or travel because injuries could trigger an AIP attack. Since not all healthcare professionals are familiar with porphyria, I feel anxious when I’m more than a couple of hours away from hospitals in Asheville or Winston-Salem, North Carolina.
Although I’m not hospitalized as often now and my attacks aren’t as severe, since 2020, I’ve lacked the energy and strength to do many activities I once could — like using a weed eater, splitting firewood, or working on vehicles. Most days, I can barely get out of bed or find the energy to sit and talk with someone. When options are limited, deciding what to do becomes less difficult.
Throughout this column, I’ve referred to “simple decisions” as if they’re easy to make, but that’s rarely the case. Even before AIP, I found decision-making challenging. I call these choices simple only because, before my diagnosis, what I ate or wore didn’t have such a profound impact on my life.
Despite daily struggles with decisions, I made up my mind long ago to a blessed porphyria warrior, and I stand by that choice!
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.
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