And Now, I Can't Breathe...
I struggle to climb the fifteen stairs to my apartment. Forest fires in Oregon and Idaho have filled the air with smoke, and it has 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...
My breathing had changed
Pain? At least I could see. I found myself crying in frustration. This summer, yet again, I had no help. Fifteen rooms to clean, fifteen toilets, thirty beds, fifteen tubs, tables, floors to vacuum and all that laundry. I had two days to get 'em done, which a couple of 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. In his Jeep, alone for days. Frozen. I remembered how he had such difficulty breathing a few months before...
Finding inflammation in the lungs
Pain and congestion in the lungs. I thought of my dad, a smoker, and a diabetic. Heart failure at the age of 55. Died in his eighteen-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 doctor in August. The frog's tongue wouldn't move. She slapped me behind an x-ray 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 of inhalers, and some albuterol.
Psoriatic arthritis pain
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.
Fighting chronic fatigue
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 baby girl gets me in the gym several times a week, and I'm quite strong, though lacking in stamina.
Explaining this condition to friends
I go to visit the mountains occasionally. I've been fishing more in the first 4 months of 2018 than the last 2 years. I'm 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 are really just bad. My body's system attacks them. So basically, all the room in my lungs is taken up by giant hives.
Daily life of psoriatic symptoms
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 eye.
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.
My lungs control my life
I hide that I'm struggling to breathe, I fight every day to retain some of version of myself. When I begin to feel pain in my shoulders, I hold them straight up. When I'm feeling the ache in my knees, I step with confidence that is unwavering. The burning on my torso is like fire, but my back is straight and the stomach is 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.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?