Making the trip to Chicago for this year’s PorphyriaPalooza event
I jumped at the chance to connect with my community this month
Toothbrush, check. Clothes, check. My book, “I’m Not Always Me,” check. Purple hair, check. Finally, I was ready to go to Chicago for the PorphyriaPalooza!
My husband, Daniel, and I had traveled to Michigan from our home in North Carolina in March 2019. Five years ago, Lake Michigan was completely frosted over. It was a blessing to see the wind making waves from the 13th floor of the Hilton Chicago. But I’d never been to Illinois. Now I was going there.
I found out about PorphyriaPalooza in June and had been beyond excited for its arrival. The September event, organized by the United Porphyrias Association, was “designed to bring together the Porphyria community for a weekend of connection, learning, and enjoyment.”
Not only was I asked to speak at the event, but I’d also have the opportunity to meet other porphyria patients. Although every woman on my mom’s side of the family has the condition, I’d never met another patient besides my relatives. This event was an opportunity I couldn’t miss, despite the 10-hour drive.
My mom, Donna — like me — has acute intermittent porphyria (AIP) and knows what it’s like to have an attack. However, I didn’t initially tell her I was going to the PorphyriaPalooza because I selfishly worried the trip wouldn’t be about me anymore.
I was also afraid that she’d be upset about my book, which was published in May. In “I’m Not Always Me,” I describe my life growing up, including how my mom behaved during that time. Her temper then was a lot like mine is now, though it’s important to remember she was going through menopause while I was going through puberty. Both of these changes, as well as porphyria, affected our behavior and emotions.
Although I made her out to be the bad guy in my story, my mom has always tried her best and been a good parent. But I felt I had to bring the bad times to light for people to understand how AIP can affect mental health. I’m sorry, Mom.
In the end, I invited her to the event, and I’m thankful I did. We had a blast, and her support meant the world to me.
An eventful trip
My mom, Daniel, and I packed our bags and made the long drive to Chicago. I’ve shared before that I struggle with mood swings, and they made an appearance on our trip.
At one point when it was my turn to drive, the GPS stopped working. My anxiety started to roar, followed by my temper. I was coming up on an exit and didn’t know where to go.
Daniel told me, but he did so without looking at the GPS, making me not trust his response. “Which way do I go? You didn’t look at the GPS!” I yelled. I was full of rage and took it out on the person I love most. I’m sorry, sweetheart. These mood swings have to stop.
Keep an eye out for my next column, in which I’ll share juicy details about PorphyriaPalooza. In the meantime, if you or a loved one has porphyria, I’m interested to know if you struggle with severe mood swings as I do. Please let me know in the comments below.
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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