Finding my inner strength as a blessed porphyria warrior
Dealing with AIP has made me stronger than ever before
The pain of an acute intermittent porphyria (AIP) attack is almost unbearable. It feels like someone is squeezing my right side with their fingernails, and it won’t stop. It has to stop. I almost can’t take it anymore. “Yes, I can!” I say to myself. I can get through this pain by the grace of God and because I’m a strong and determined porphyria warrior.
As a person with porphyria, I do what I’m supposed to do. I go to the doctor regularly and eat small, high-carb meals throughout the day. I avoid triggers such as alcohol, stress, unsafe medications, certain types of birth control, and fasting. Is it easy? Absolutely not. Is it possible? Most definitely.
If I can do it, I have confidence that others can, too. “Why is that?” you may ask. I’m weak. I’m overly sensitive to pain. I’m sick and nauseous all the time. For the past three years, I’d throw up after eating or even drinking water, though that seemed to stop for the most part after someone prayed over me. My legs get weak. I can barely stand. All I can do is sleep and lie in bed.
Of course, these symptoms make taking care of myself and doing what I’m supposed to do difficult. If it weren’t for my husband, Daniel, I wouldn’t eat the way I should.
By myself, with pain
What about those times when I was alone? At first, I thought I couldn’t make it through them, but I did. After 10 or so hospitalizations, I started to depend on myself. Daniel would have to stay at home for whatever reason, and while hospital staff was taking care of me, I was otherwise alone.
What about when I’m completely alone? Honestly, I pray, and in that, I’ve found a strength I never knew before. In addition, I had to find my appetite and keep snacks around at all times, including in all of our vehicles.
For a while, my biggest porphyria trigger was hormones. Every month when I’d have my period, I’d end up in the hospital for almost a week at a time. While it may not be recommended for some, I decided to have a full hysterectomy. Since then, I’ve been hospitalized only a handful of times. I believe the surgery helped to alleviate many of my symptoms and prevent some porphyria attacks.
Finding the right doctor is key when dealing with AIP. If you’re in need of a provider, the United Porphyrias Association can help connect you with one in your area.
Eventually, I adopted the mindset that if I’ve made it through AIP attacks before, I can make it through them again. If this disease is going to kill me, it will. I know where I’m going when I die; therefore, I believe I’m a winner either way.
Within two years, I was hospitalized more than 20 times. Thankfully, I haven’t been admitted to the hospital because of AIP in two years. Does that mean I’m cured? I wish. Do I still struggle every day? Indeed, I do. However, I’m now a million times stronger than I used to be. The pain I once couldn’t handle is now a part of my daily walk. I have AIP, but AIP doesn’t have me. That, my dear reader, is what makes me a porphyria warrior.
I pray that other porphyria warriors find their inner strength as I did. You’re stronger than you know!
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.
About the Author
Comments