When breathing was my arch nemesis

Disease kicked me down, where do I go from here?

Things I always have on me: inhaler, nasal spray, meds, and the best chapstick ever.

Once upon a time…

I had a codependent relationship with my breathing.

I didn’t think I’d have an issue with my own breathing until I couldn’t do it at the end of my work day in my mid-20s. I had clocked in another full day in the office and a few friends were going to drinks after work. I had a headache and took a pain reliever, sent off a few more emails, turned off my monitor, and went to the bathroom. I remember hearing the first wheeze when I was in the stall and then I rushed myself to the ER, every gasp for air felt more restricted and my throat felt like someone was taking a fist and squeezing it into a ball. 

I received oxygen, benadryl, test after test. My very busy ER doctor chalked it up to a panic attack and sent me off.

Then there were several more trips to the ER with a blue face and bloodshot eyes from the lack of oxygen. After investigating with several doctors, we concluded I was experiencing anaphylaxis. I was now allergic to NSAIDS (non-steroidal anti-inflammatory drugs like Ibuprofen and Aspirin); I had taken these before without problems.

Which led to another discovery. My really bad allergy syndrome had a name and a disease: Aspirin Exacerbated Respiratory Disease (AERD). In a nutshell, this is an adult onset disease with no cure, nor known cause. Patients typically experience a trio of symptoms: allergy to NSAIDS, respiratory problems, chronic sinus issues.

Prior to and after my diagnosis, I was operating on the level of somewhat shitty to really shitty every day for more than a decade. I often used a rescue inhaler to calm down the wheeze or a tight feeling in my chest. I wished I could simply sniffle. Mine was a giant honk, startling strangers and friends around me, because the skin inside my nostrils were closed shut, like a brick wall lodged in my nostrils. Think of the sinus pressure you feel on an airplane or when you’re high in elevation. For me, it wouldn’t be released for months until I couldn’t handle it anymore and had to take oral steroids.

I have had 5 surgeries to remove polyps, which felt like cement blocking my entire sinus cavity. One of these times was an emergency surgery while I was 5 months pregnant with my second child because polyps were pushing against my optic nerve, risking damage to my vision. See pic, it also physically changed my appearance, allowing my eye to bulge.

When my sinuses altered my vision and appearance.

I couldn’t smell or taste consistently for many years. I never got to smell my first baby, which is a real crime. I was a mouth breather. On a work conference call, a client cut off the conversation to ask who was breathing like Darth Vader on the line. I hit mute, died, and crawled under my desk. My already high pitched voice also had a nasal undertone, a la Janice from Friends.

Whatever I could get my hands on to fix it, I did it. I practically lived at Kaiser with all the doctor visits, a 1.5 year trial of allergy shots which, in the end, sent me straight back into the ER with anaphylaxis. I took a rainbow of medications. I went through an aspirin desensitization treatment, followed by taking aspirin every day for a year; the process works for some AERD patients but did not for me. I tried holistic treatments, acupuncture, and natural supplements. I fasted and also chewed my way through food elimination diets. Routine sinus rinses, aka neti pot, 2x a day. I tried various shots in the clinic. For a few months, I had to administer a shot to myself. It’s morbid to pinch my belly fat, take a syringe, inject myself and slowly push in the fluid. It took me an hour to do this 5 second procedure because it threw me into a state of wanting to flip out, puke, and run away from myself.

In 2018, I was sick for the entire year, with sinus infections, the flu and pneumonia. It led me to be vigilant about not getting sick, which is impossible with young children in school. The fear of COVID-19 sat heavy on me.

Overall, I did my best but it sucked. When I read about Kurt Cobain feeling suicidal and self-medicated due to chronic and crippling chronic stomach issues, I can relate. I was depressed. All the days and nights I had trouble breathing, I wanted to say fuck all this and give up on breathing altogether. 

Excuse me for airing my grievances. This is my first time spilling the story of my disease onto a page. But there is a happy-ish ending.

Breathing down the house

I’ve been in remission for about 2 years thanks to several medications and a shot called Fasenra, which a nurse administers in my arm once a month. I also thank the higher powers for my allergy doctor at Kaiser, Dr. Tse. He’s an amazing human and has been a great advocate for me getting better. I can breathe, smell, taste, and I hardly have sinus issues.

My codependent relationship with my breathing has evolved. We’re now past the brutal part of our relationship (hopefully). My comeback story can be called “breathing down the house,” an homage to one of my favorite songs by The Talking Heads, Burning Down the House. Lead singer David Byrne said in The Wall Street Journal interview: 

“The title phrase was a metaphor for destroying something safe that entrapped you. I envisioned the song as an expression of liberation, to break free from whatever was holding you back.”

My breath was broken but now that it’s “healed.” Where to go from here? Now that it’s no longer holding me back, I was hoping I could relax and let it do its thing. After all this, surely, I didn’t think I needed to focus on breathing anymore.

Alas, anything I want to stay alive and healthy — like a relationship, a house plant, a career, a mind and body — needs work. I’ve learned my breath needs maintenance. I can let it be, do its own thing but, I still need to work on it. I’ve noticed a few tendencies about my breath now that I have a proper chance at an inhale and exhale.

• I catch myself holding my breath when I’m mad, or anxious, or if I’m doing something physically strenuous.

• When I run, those side cramps are a bitch, and it’s likely because of shallow breathing.

• I also tend to hold my breath when I’m writing on my computer, or respond to email. Also when I’m stressed, or focused.

What’s up with that?

Linda Stone, a researcher and former tech exec who deeply explored what she calls email apnea, the “temporary cessation of breath or shallow breathing while working (or playing!) in front of screens.” She writes about the effects of holding your breath:

Drs. Margaret Chesney and David Anderson, formerly of NIH, demonstrated that cumulative breath holding contributes to stress-related diseases. The body becomes acidic, the kidneys begin to re-absorb sodium, and as the balance of oxygen, carbon dioxide, and nitric oxide becomes compromised, our biochemistry is thrown off. Nitric Oxide (not to be confused with nitrous oxide, the “laughing gas” used in the dentist’s office) has been implicated in immune function, learning, memory and cognition, sleeping, weight, feeling pain, and inflammation.

So now I’m aware of my breath, under a new lens. New breath, different challenge.

I’m learning about different breathing exercises. I’ve been exploring my breath in yoga classes. This week I tried chanting during meditation. I have tried box breathing, breathing out like a lion, alternate nostril breathing. All these methods mean I need to throw my ego out the window and get over looking silly.

I’m in the infancy of exploring this. Let’s see if I make room to do it each day. Mindful breaths, let’s go.

Now that I have this new relationship with my breath, I wonder what we can find together.

Unpacking a few things I’ve learned from breathing exercises

• If you want to unlock Pandora’s Box on our breath, read the book by James Nestor. Yes, it’s titled, Breath. Read fascinating studies and theories about our shrinking jaw lines, chewing gum, and how we may not be properly exhaling and inhaling.

• Imagine breathing through your forehead (a.k.a. Third Eye). My friend Lola demonstrated this during a recent course she was teaching. Imagining where your breath flows is an interesting idea.

• Box breathing, used by many to calm the nervous system.

• Wim Hof is trendy, yes. And I’m sorry if you rolled your eyes on this one. But so many friends, including my husband, use his techniques. I still cannot bring myself to dip my body in cold water (yet). Also, enjoy this parody on ice baths.