Walk a mile in my moccasins
My PsA was first discovered in my hands, a well-respected rheumatologist said, "where did your doctor go to school? I see the damage with the plain eye." Then my feet felt like they were going to crack in pieces and the pain, bilateral knee replacements. I found out from several gastroenterologists that I got it in the service from exposure and was sitting dormant for decades since the '70s.
My liver was failing. The enzymes from my liver were giving all this crap to me. Unknown to me, I've had a rib break off from a violent sneeze after pneumonia (a flu shot gave me pneumonia). That piece punctured my lung, 3 arteries, and my heart. I was full of 3 liters of blood in my chest. The doctor said it's a bad flu, drink hot tea and lemon. I said something was wrong until I couldn't breathe. It was a left hemothorax. Most don't survive. They put a metal plating on my rib, which broke after 2 months. My right shoulder is bone on bone. My left hip is on its way, I have severe migraines from the bone spurs and fractures in my spine. I could go on and on.
The real impact of psoriatic arthritis
The military totally and permanently disabled me, so money helps. I'm on home care. They pay a nurse to help me. I lost my 26-year-old son in the process. Lost my home and 2 businesses. All gone. I was able to buy a home in the white mountains, which my wife and I are so blessed. But the doctors know about my pain and most won't do anything for me. Some do care. There are lots of pills, inhalers, and nebulizers.
I get so tired so easily. Most people look at me and say you look good, with my cane of course, but they have no idea the suffering that comes with this disease. It affects everything. Over a decade ago, I could bench press over 300 pounds with ease. Last week, I fell off a kitchen chair onto the floor from slipping.
My list goes on, but my main purpose is to say: I DO know what you go through. Sleepless nights and all of it. I had to order one of my medications a few days ago. There's only one that helps with pain. I got the nurse to run around a day or 2 early, I just wrote I'm out on this day and I'm tired, just plain tired, well my doctor got that on and it's on the way to me now. I'm resting on a heating blanket under my sheet. I lay on that a lot it helps.
The importance of advocating for your health
Don't stay silent when they doubt you. Tell them how you're hurting. I feel like I've told the story repeatedly to a lot of doctors who don't listen, the squeaky wheel gets the grease, that's what a good nurse told me. Or write the hospital a review and rating. I've been through many battles and I'm tired. I am in my sixties and just want some peace and pain-free life. Hope this wasn't too long and it helped someone. Peace and God bless.
Do you have a story about living with psoriatic arthritis to share too?
Others usually confuse my psoriatic arthritis with...