My Secret Weapon for Managing Acute Porphyria Attacks

My Secret Weapon for Managing Acute Porphyria Attacks
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In accepting chronic pain and the acute intermittent porphyria (AIP) roller coaster, I came to terms with the realities of my new normal. That brings days that must happen and times I get to choose if the burden of my acute hepatic porphyria pain and its corresponding shame will overwhelm me emotionally.

I’ve decided pain does not equal suffering.

It’s important to be ready for flares at any time with tools I can have on hand. In honor of Pain Awareness Month, I am devoting this column to managing acute pain attacks. I am ready when symptoms strike because I keep a flare kit. Following is what it contains.

My flare kit

For porphyria symptoms

I take prescription medication for my acute symptoms, but most of the tools used to combat the pain and nausea of AIP can be purchased over the counter. For pain, Tiger Balm Ultra analgesic gel soothes my achy neck and shoulder muscles and leaves me smelling like yummy cinnamon.

Also, my trusty corn bag is an ingenious invention I sewed for myself using fun cotton fabric and dried corn. I store my corn bag in the freezer, as I primarily use it as a cold pack, but I can also microwave it to use as a heating pad.

For my nausea, chewing peppermint gum is sometimes more effective than anything else.

For comfort

I feel deep, heartfelt appreciation for the athleisure trend. Now I can wear sweatpants for days and not feel like a total slob. I own flow-y boho pants that feel like pajamas, leopard print joggers, silly graphic tees, soft-as-butter hoodies, and many pairs of the fluffiest socks.

I also have a favorite blanket when I’m not feeling well. It’s one my fiancé, Michael, gave me for our anniversary two years ago and leaves me feeling covered in love. Pair it with my sleep mask and ear plugs (flare kit essentials), and I’m ready to shut out the world when I lie down.

I derive a great sense of comfort from reading fiction, but sometimes it’s hard for me to use screens or read at all during flares. Fictional audiobooks are often the best way I can distract myself from my pain without making my symptoms worse. I use the Libby app to rent books from the library and lay my phone down next to me in bed, listening through its speakers.

When I’m lying low for long periods of time, the last thing I want to do is feel like I’m soaking in the “sick room” smell. That’s why I include orange essential oil in my flare kit. It goes well with many other oils if I want to try a combination.

The last comfort items in my flare kit are my self-love notes. I keep Post-it notes where I can see them in my environment, in books, on mirrors, in my closet, and on the side of my dresser. They say things such as: “You are more than your pain” and “There is a future version of me who is proud I was so strong.”

For when things slide sideways

When I’m deep in a flare, I never think I’m sick enough to seek medical intervention. A critical component of my flare kit is an understanding — a point-of-no-return pact — with my caregiver, Michael, of when my pain becomes something I can no longer manage safely at home.

If I do end up seeking medical attention, I carry a porphyria emergency card (cards can be requested through the American Porphyria Foundation) in my wallet. My AIP can escalate to a point it requires urgent ambulatory care or hospitalization, yet my invisible symptoms are easy for medical providers to overlook.

While I’m focused on comforting my body, it’s critical I don’t neglect my mind. It’s easy to lose myself in severe symptoms, but it’s a bad idea to forgo management of my mental health at this time. During an acute porphyria attack, I will be more prone to psychiatric symptoms such as anxiety, depression, and insomnia. Reminding myself of this fact will remove quite a bit of shame. I also rely on my team of safe people during these times and try not to care about coming across needy (reminder: we all have needs) because I am worth no less when I am in pain.

It doesn’t matter how strong of a flare kit I assemble if my head goes to a dark place and can’t find its way out. The effectiveness of my pain management is entirely contingent upon the kindness and love I show myself during an attack. It’s living through these hardest days that will ultimately transform me into a stronger porphyria survivor.

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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.

Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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