And now, I CAN’T BREATHE…

I struggled to climb the 15 stairs to my apartment.
Forest fires in Oregon & Idaho had filled the air with smoke, and it hung like a hot, wet blanket in the heat of July. This summer was a struggle, more so than the other years where we were socked in with smoke. Each breath was like trying to lift my chest with a cinder block on it.
Pain?
At least I could SEE…
I literally cried in frustration. This summer, yet again, I had no help. 15 rooms to clean, 15 toilets, 30 beds, 15 tubs, tables, floors to vacuum, all that laundry…I had two days to get ’em done, which a couple years ago would have been enough.

But not this year.
Something had changed.
I thought about my friend Harry. Harry died of a massive heart attack in the middle of the winter of 2016-17. In his Jeep, alone for days. Frozen.
I remembered how he had such difficulty breathing the months before…

Congestive heart failure.
Pain & congestion in the lungs.
I thought of my dad, smoker & diabetic. Heart failure at the age of 55. Died in his 18 wheeler. My grandmother died of lung cancer at 59, my sister the same at 39. I was turning 57 in a few weeks, I had smoked on and off for THIRTY years. (off for over 6 now) Was it MY turn?? Did I wait too long to quit? Was this pain more than just the smoke?

I got to the doc in August.
The frog’s tongue wouldn’t move…
She slapped me behind an xray so fast~I was really afraid then…
“I don’t see anything”…Relief? I’m not sure. If I wasn’t dying of heart failure or cancer-then WHAT? “Well, we have another thing to tackle, and it’s looking like inflammation in your lungs.” She gave me a nebulizer, a prescription for a couple inhalers, and some albuterol.

I hadn’t fished all summer.
I never went hunting in October.
I couldn’t breathe. 30-50% some days. Finally, I knew that I had to decide some really important things. I have so far avoided the biologics in favor of steroids, and Naproxen, I use Turmeric for inflammation, and Mullein for my lungs.I’m on the nebulizer once a day (more if needed), and I keep fighting the way I feel is best for me.

I quit my job.
I left my beautiful mountains.
Chronic exhaustion became another resident in my body. I had to make some changes. If I was going to entertain the thought of a biologic down the road, living alone in the mountains, cleaning up other people’s germs wasn’t gonna cut it. I also felt that I shouldn’t give up my life for a job, no matter how much I loved it.

I gave up my home.
Depression moved in.

I had to move to town, got a job at Walmart as a cashier, which is SO very easy compared to what I was doing. I’m still living with my daughter, not rushing into any other changes right now. I still struggle to breathe most days, but my babygirl gets me in the gym several times a week, and I’m quite strong, though lacking in stamina.

“You look great!”
“Are you better yet?”

I go visit the mountains occasionally, & I’ve been fishing more in the first 4 months of 2018 than the last 2 years. (taking my time walking) and I’m planting a garden (albeit slowly). But my friends always ask if I’m better yet. I look them in the eye, and I say (gently) that I will NEVER be “better” at least as far as cured. I may, at some point take a drug that will alleviate my symptoms, but this illness will never go away.

“I don’t get it”
“It’s just hives, right?”

Because I break out all the time, I have found that using an “allergy” type analogy works for me in explaining what’s going on. I ask if they’ve ever had hives, or an allergic reaction, and I tell them that my inflammation is like giant hives. I tell them that because my immune system thinks my good parts (lungs, skin, eyes) are REALLY just BAD…my body’s system attacks them. Even though they weren’t doing anything bad. So basically, all the room in my lungs is taken up by giant hives…

I’m a photographer.
And life isn’t always beautiful.
I have a photographic journal of my psoriasis, purpura, and the giant inflammation spots I get from clothing. If I accidentally sleep on my hand, I can wake up looking like a gargoyle. I get puffed up eyes, like black eyes, I get hands that don’t move because of my fat fingers, I wear FLAT shoes only, due to arch supports causing inflammation. I have a photo of perfect shoestring marks on the top of my foot…
We are all so different, our pain, our battle scars. We live with our inflammation, it is part of us now.

I walk tall, with purpose.
Back straight, good steady stride.

I hide that I’m struggling to breathe, I fight every day to retain some of ME. I’m beginning to feel pain, in my shoulders-I hold them straight up. I’m feeling the ache in my knees-I step with confidence that is wavering. The burning on my torso is like fire-but my back is straight, stomach sucked in. My broken neck won’t turn, but I keep my head high…

When people ask why I’m so happy, I always say…
Every day top-side is a GOOD day!

And it is.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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