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The Tightrope of Chronic Illness

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In the most recent newsletter, I talked about wanting to trade bodies with someone...just for one day. This way they could tell you just how freaked you should be about the symptoms you’re experiencing.

When you cope with chronic illness, especially one that is progressive, symptoms randomly visit from time-to-time. “Oh, extra tired today.” “That’s a weird sensation.” “Yep, that definitely burns.”

If you’ve lived with health stuff for a while, most things get shrugged off. If they didn’t, you’d be forever on the internet or at the doctors investigating things that are probably no big deal...but wait, what if they are a big deal?

Managing illness has a lot to do with managing your own worries. Like slowly sliding one foot in front of the other on a tightrope, you need to balance. You want to be strong and able to deal with just about anything; yet, you don’t want things to be worse than you’re assuming.

The Big Deal

A little more than two years ago I shrugged off some symptoms that landed me in the ER. Starting in October of 2011, I was short of breath and had a mild cough. This was not unusual for me. I have always had a loud “barking” sort of cough and get easily out of breath. Even as a child, I was always last to run the mile.

Doctors know that I have decreased lung capacity, but they are not exactly sure why. The theories range from scoliosis restricting the expansion of my lungs to anomalies in my larger bronchial tubes mimicking asthma related to the disorder I was born with. Whatever it is, I’ve gotten used to it, and Phillip’s gotten used to it.

By the time Christmas was upon us, my breathing was worse. It felt like I had congestion in my lungs, but nothing worked to relieve it. I didn’t feel particularly sick, so I wasn’t too worried. We visited my out-of-town family that year for the holidays, and I continued to futilely cough.

One evening at my mom’s, Phillip thought my cough sounded worse and he finally got me to go to urgent care. The nurse practitioner suspected I had bronchitis and prescribed an antibiotic, but mentioned that if my symptoms persisted I’d need a chest x-ray. My symptoms didn’t get better, but it was Christmas, and we were out of town, and I’m stubborn, so I waited. I waited too long.

By the time we returned home, I was getting out of breath just holding a conversation. Still I wasn’t all that worried. I have breathing issues. No biggie. Life goes on.

Fortunately, I did think it was weird that things got worse instead of better after I started the antibiotics, so I called my primary care doctor, and when you say you’re having trouble breathing, they get you right in. When the doctor put the stethoscope up to my right lung she couldn’t hear anything in the lower region. Nada.

She thought I either had a blood clot or a collapsed lung. She wanted me to go to the ER to get a CT scan and the care I need. I wasn’t allowed to leave the doctor’s office to walk or drive the two blocks to the ER. My doctor wanted to call an ambulance; I thought that was overkill. I waited for Phillip to come and pick me up. The doctor called ahead to tell the ER I was coming in. That was actually the great part: ER with no waiting!

Turned out I did have a collapsed lung, that I had willfully ignored for many days. Walking pneumonia was causing an infection that blocked the lower portion of my right lung and it deflated. I stayed in the hospital for two days to have a bronchoscopy to clear the blockage and receive IV antibiotics. Good as new.

The Tightrope

Yes, we walk a tightrope. A very. Tight. Rope. Fall to the right and you become a hyper-vigilant, hypochondriac of a hot worried mess. Fall to the left and you end up in the ER with a collapsed lung. Somewhere in the middle is the balance to know when something can be ignored and when you should be concerned.

Since this site is about learning from illness, this episode did teach me a few things about learning to balance my hot worried mess with my ‘who cares’ free spirit.

  • Know the symptoms of your illness. What things should you be watching for?
  • If your gut is telling you that something isn’t right, ask someone. Ask twice if you need to. If making a doctor’s appointment would be overkill, call a nurse line. They can walk you through what might be going on and offer at-home remedies if appropriate.
  • Watch your symptoms over time. If something gets worse instead of better, for more than a week or two, get it checked out.
  • If a medication that is supposed to help is doing squat, get your rear back to the doctors or at least call and let them know what’s going on.

Now, if we could trade bodies, I would have had Phillip slip my lungs on and he would have dragged me to get a chest x-ray long before I actually did. I hope someone is working on this body-swap technology.

How do you balance on the tightrope?

This piece was orginally apperared on the Chronic Resilience Blog. 

More Blog Posts by Danea Horn

author bio

Danea Horn was born with VACTERL Association, a rare birth disorder that caused malformations in six systems in the body and left her with chronic kidney disease and other demanding health challenges. She is author of Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness. She blogs at Chronic Resilience, and you can follow her on Twitter at @daneahorn.


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