Nothing inspires me more than a person who has gone through hell & back & STILL manages to find the light within all the darkness. I’d like to say I try to remain happy go lucky despite life’s obstacles. And with that, I try to surround myself with individuals who do the same. Throughout my blogging journey so far, I’ve connected with tons of other bloggers in the community. But no one stands out quite like this particular person I’ll be talking about today. Amy of Delicate & Brutal is the epitome of living with the glass half full. For someone who has foregone not one but two medical diagnoses & an allergy based cell disorder & STILL finds the humor through it all is truly remarkable. I’d like to say I’m that strong – but I’m not so sure.
I’ve been thinking about the concept of happiness & how a person is to maintain said mindset. With the year we’ve all had, I’m sure we all are on thin ice. But it’s also remarkable to think some people’s lives were just as hard even before the pandemic. I hope in some ways we’ve learned the idea of not truly knowing a person’s fate until you walk in their shoes. I know for myself, I have greater respect for us & all we do just to endure such situations. That’s why I wanted to have a conversation with Amy & walk a little bit in her shoes.
SOME BACK STORY:
If you aren’t following Amy & her story on her blog, first of all… (what are you doing?) & second, I wanted to give a little back story. Amy lives with a life threatening allergy to a chemical called mercaptobenzothiazole, which is found in a wide range of common items such as medical gloves, rubber bands, garden hoses, tires, glue & earphones to name just a few. Contact to such items can cause blistering rashes, difficulty breathing, & the swelling of tongue & throat. Swelling can become so severe that she has needed to be intubated & put on a ventilator.
If that wasn’t enough, Amy also lives with two rare conditions – a mast cell disorder & a rare disease called Hereditary angioedema (HAE). If you are unfamiliar with medical terminology, mast cells are cells that are found in the body’s tissue apart of the immune system. They release a chemical called histamine when recognizing foreign cells such as allergens. With the mast cell disorder, the release of histamine is ongoing despite usual treatments. For Amy, this means her allergic reactions are life threatening & need multiple rounds of antihistamine. “I carry around Epipens with me at all times.” HAE, despite its name, is not necessarily genetic. “Hereditary angioedema is caused by a defect in a protein called complement in my body. It causes swelling in my face, tongue, throat, and belly. Episodes of swelling can be triggered by infection, illness, trauma, stress, or hormonal changes; when I have an HAE attack, I self administer treatment through an IV at home.”
She discovered such allergic reaction from wearing gloves at work in 2007 & repeated exposure to chemicals caused an anaphylactic reaction in 2018. “I had no idea how widespread this chemical was until my allergist gave me a list. After a few more anaphylactic reactions over the following couple of years to wasp stings and MRI contrast dye, I was diagnosed with a mast cell disorder in October 2019. In January 2020 I was also diagnosed with HAE after being intubated twice for tongue and throat swelling not due to allergic reactions.”
Now, when I heard this backstory in more detail, my jaw dropped. And I had to know what went through her mind when she found all of this out. “My initial reaction was relief that we had answers. Now that we knew what the conditions were, we could better formulate a treatment plan and lifestyle changes going forward. If I’m keeping it real, I do have intermittent moments of crying and frustration when I feel my limitations.”
OVERCOMING THE NEGATIVITY
Having the right support system is what really keeps us all moving forward even during the most difficult times & lifestyle changes. The same goes for Amy. Her biggest support has been her husband G & her closest friends. “He (G) has seen me at my worst with vomit on my hospital gown while bucking and gagging with a breathing tube down my throat. G advocates for me when I am unable to do so for myself. He is my rock. The group of people he goes running with have also been a huge support to both of us. When G missed out on running a marathon because I was in the ICU, they all stepped in to find ways to help and support both of us. I get emotional just thinking about how much they support us and I haven’t even met any of them yet.“
And some of the best forms of medicine is a good laughing session. “I have always had a wicked sense of humor and can laugh at my weirdo self for hours. Especially if I cut a loud funny fart. But my attitude really started to shift once I accepted my life with these medical conditions.” And of course, acceptance is such a powerful realization when going through forced change such as this.
SHARING HER STORY WITH THE WORLD
Like a lot of us in this creative space, Amy blogs to share her story. “I have always been told that the events in my life could fill a book or become a TV show.” As something that could be seen as a distraction to the reality of life, Amy doesn’t see it this way. “I don’t typically do things to distract myself from life. I believe in handling situations head on. I express my feelings in the present moment. No matter how uncomfortable they may be. For me, distracting myself would only delay the inevitable need to deal with something. I think the longer you put something off, the harder it is to work through. Ain’t nobody got time for that!” But also, Amy is a humble queen & doesn’t see herself as an inspirational figure. “I put my underwear on one leg at a time just like everyone else.”
ADVICE TO THOSE WHO ARE STRUGGLING
“If you can’t change the situation, find a way to accept it. It’s perfectly normal to feel upset and need to vent about it. Lord knows I have done my fair share of venting and cussing about my situation at different times. But once I vocalize my feelings and process them, I’m good. I don’t let them fester. Chronic complaining doesn’t fix anything.”
FINDING HAPPINESS IN THE SIMPLE
I know from my experience, once I focused on the simple pleasures in life, it is easier to smile through the pain. And if you need a boost of encouragement, be like Amy. “[I look forward to] eating breakfast, taking a hot shower, seeing our orchids bloom, listening to our cats zoom around like a herd of buffalo, watching them rabbit kick their favorite catnip toys, and checking things off my to do list.”
I’d like to thank Amy for allowing me to interview her & share this perspective to my readers. If you want to learn more about her story & read more humous thoughts, be sure to check our her blog, Delicate & Brutal.
And to my readers, what makes you happy?