When illness invites inquiry

My chronic illness is back + a real-time look at denial and acceptance of a disease that was in remission for years + side note: I miss my husband

the monthly needle that saved me for 3 years no longer works, what now?

I’ve been in denial about my chronic respiratory illness¹ creeping back for the last 2 months. Called AERD (aspirin-exacerbated respiratory disease), it is an inflammatory disorder of the sinuses and lungs.

Symptoms started appearing again slowly. At first, I lost my sense of smell. I thought, maybe the sniffers will work again even though I know that, when it disappears, it almost never returns unless I intervene in a significant way (which I’ll explain later).

Then I started mouth breathing. Sometimes I could only breathe out of my right nostril. Or my left. Some days neither.

The new symptom last week was body aches. I’ve been lethargic. I’ve got more headaches, a sign that sinusitis is building.

The biggest clue was the relationship I started rekindling with my steroid inhaler. Like best buds, we were everywhere together because my throat would constrict, my breaths became deep wheezes, and I clutched the plastic thing for dear life. It is called a “rescue” inhaler for a reason. My breaths were short, which cut my daily walks I once enjoyed, shorter. I hacked and coughed all the way back home.

I didn’t do anything for awhile because I thought these problems would be solved with a shot administered by a nurse every 5 weeks. I chatted with

Rachel Katz

, who has written extensively about chronic illness about my disease last year and I proudly told her I was in remission.

This biologic², called Fasenra, worked. It was my shining jewel. I practically skipped to my appointments in which the nurse would poke me with a needle and press the liquid medicine into the back of my arm. This medicine worked without fail for 3 sweet years.

And then, in 2024, it no longer works.

I’m in the middle of a relapse.

Since my diagnosis 12 years ago, I’ve done a million and a half things to work with/through/against this disease. When I found something that worked, the thought crossed my mind: what if what works for me now, won’t work anymore? Many times, I’d find myself with my symptoms again and had to start over with a new plan.

I’ve had a plan A to a plan B and have had plans through the alphabet multiple times. I’ve had several scary visits to the ER, many sinus surgeries, tried Western medicine, Eastern medicine, various diets, and I’ve meditated and prayed my illness away.

In the last three years, because of this shot, I was able to live my life. Breathe and live without constant sinus pain.

Now that my world is being tested, now that I’m working closely with my doctor again to try and find a new plan, I’ve been sitting with a few observations. I thought about telling you that I’m taking the bull by its horns and staying strong. It just isn’t genuine. I’m sad and that’s OK.

But I am hopeful. Thank goodness I have a doctor that cares. As I ready myself for more tests, explore new medications, and come up with plan XYZ, I decided to write down real-time thoughts on my illness.

I took the quick fix. I’m trying to stop the shame that comes with it.

I decided to ask my doctor for a prescription of steroids. I’m in the first few days of prednisone and oh my goodness, thank the powers that be, I’m even going to thank big pharma here. I already feel better. I’m giddy.

So why was that decision so heavy?

We live in a society that prides itself in the idea of “pull yourself up by your bootstraps.” What if you have no boots, or what if you can’t breathe and, therefore cannot walk to the boot store?!

I just talked to a mom who proudly said she didn’t have fever reducer in her house until this last bout of illness that struck her whole family. I nodded along. Yeah, she’s a good mom.

Yet, when I thought of myself, I immediately felt small inside. I took the drugs to quickly fix me. Also, my son is on antibiotics right now. Does medicating us make me less of a mom? Does it make me a bad mom? Why does my mindset go there? Can we be somewhere in the middle please? I’m over the martyrdom because now I feel like shit for taking something to get my life back in order. So I can breathe. So I can mother my kids. So I don’t have to be a slug in the slog of an incurable illness. So I can put my head on straight while I figure out my next move.

No more gaslighting myself.

When I don’t pull myself up from those bootstraps, these are the sort of things I say to myself: “I don’t have cancer. I am not bed-ridden for days. I have all my limbs. There are so many people in this world suffering more than me so therefore I have no room to feel however I feel about my disease.”

This is called gaslighting. And I’m doing it to myself. I’ve been talking to myself this way for a decade and I’m working to liberate myself by honoring me.

My focus is to heal. I cannot heal if I diminish and belittle my experience.

It’s time to cuddle and coddle me.

My body is telling me something. I must listen.

When I’m so exhausted from a breathing episode, I don’t want to human anymore. Then I go into this spiral of feeling like a failure. On Tuesday, I picked my kids up from school and had grand plans to make an epic dinner with them — a BLAT, that’s bacon, lettuce, avocado, tomato sandwiches, to be exact. Instead, I practically collapsed on the couch when we got home. My body told me it needed to shut down.

So I listened. When I got up, I told my kids I didn’t feel good and my body needed to rest. There was no question about it. We just moved on. They were fine, we ate toast and eggs instead. I was better because I let myself rest when my body asked for it. And I didn’t place the massive guilt on myself like I’ve done before.

It makes me think of the year 2018. That was one of the hardest years of my life, where my illness (paired with the flu, sinus infections, and pneumonia) kept me in bed for a majority of the months between March through December. I pushed myself to work full time and pretended I felt fine with my bosses and I never fully allowed myself to rest. I was on a mission to power through. I had a job to fulfill, I had a son to breastfeed, I had a daughter I didn’t get to be with, and a husband I barely knew. I was riddled with guilt and no care for my own physical or emotional needs. I was pissed I was in this position.

I wore masks so often that year because I was so fearful my family might get whatever I had. I remember thinking I never want to do this again (who would have thought 2020 would be right around the corner!?)

I look back and I needed a good cuddle — with myself. I was so sick, I needed to be coddled. This time, I hope I give myself permission to kick off my boots, and rest when I need it.

no worries of chronic illness here

Also, totally unrelated. I miss my husband. He’s gone on a well-deserved trip with his friends and I look forward to him coming back. I think my healing will work even better with cuddles from my partner.

P.S. I’m thinking of taking a break from my newsletter for a couple of weeks. If I don’t post, imagine me taking an epically long nap and I’ll pop up when I’m ready.

1. I wrote more about my illness here: When breathing was my arch nemesis

2. FASENRA is a biologic designed to target and remove eosinophils, a key cause of severe asthma. From the FDA: Biologics are isolated from a variety of natural sources - human, animal, or microorganism - and may be produced by biotechnology methods and other cutting-edge technologies.