I am a blessed porphyria warrior who is AIP, or accepting it positively

Note: This column describes the author’s experiences with various medications and therapies. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Dear diary,

I am frustrated. I am tired. I don’t feel good. I am 31 years old, but I am in chronic pain daily. I just want to feel good. Healthy. Normal.

I remember growing up — always being nauseous and in pain. My legs, lower back, arms, shoulders, neck, and stomach especially hurt regularly. Although I have gotten older, the pain has not eased up or gone away. In fact, it has gotten much worse.

In the past, my pain would go away for days and then come back. While my pain may go away for a few hours, I have to deal with it every day. I do my best to keep my house clean, go to the store, and run errands, but there are days when just getting out of bed is a challenge.

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AIP: Accepting It Positively

I am beyond thankful that I have not been hospitalized in a year due to my symptoms of acute intermittent porphyria (AIP). But fighting through the pain and nausea every day is really getting on my nerves, and I wish I didn’t have to deal with any symptoms. I just want to be able to wake up without feeling nauseous and in pain. I want to be able to eat without throwing up. I want to stop having mood swings.

Yes, there are medications to alleviate my symptoms, but many of them are either unsafe for porphyria or are addictive. In general, especially when I am hospitalized, a regular dose of morphine does not ease my pain. Liquid morphine is effective, but I refuse to take it on a regular basis. I’ve looked for natural pain remedies, but some herbs can be just as dangerous as unsafe pharmaceuticals for some people with AIP.

I have to admit that medical marijuana has been the most successful remedy for my pain, nausea, and anxiety. Unfortunately, smoking isn’t safe for me, so it’s a very hard battle that I fight. While there are safe alternatives that don’t contain psychoactive components, I’m still tired of having to depend on something to make me feel better.

As I write these words, I’m experiencing all of the symptoms I named above, and the severity of my anxiety is intensifying.

I have dealt with AIP, and life, long enough to know that if I feed into that negativity, I’ll only feel worse. I know I’m not the only person who feels this way.

I cannot change the fact that I have AIP. However, I can change how I see the condition and myself. I am a mess, but that is OK. If I didn’t have AIP, I might have some other disorder. Just because I don’t feel good doesn’t mean that I, and the things around me, are not good.

It’s my responsibility to find the good if I want anything other than sickness to come out of my life. I don’t feel completely OK often, but I remain a blessed porphyria warrior who is Accepting It Positively.

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.