In the face of difficulties
I don't know how many times a nurse or doctor has asked me how I made it through illness. Even with the prednisone/immunosuppressant protocol, many patients with Granulomatosis with Polyangiitis (Wegener's Granulomatosis) die from the disease.
There are two things about me that keeps me hanging on. First, I'm a stubborn, cranky woman. Second, I try to get back to normal after I take a hit.
For instance an example of my stubbornness was when I had ended up in the hospital for a couple of days after being diagnosed with diverticulitis, I was out of my bed and on my feet the second day. Yes, I felt nausea and pain. I refused to be on my back for another minute. I walked around the area until I was tired. I started doing this about every hour or so. I had not prepared to end up in the hospital so I didn't have any pajama bottoms. Still I held my pole with antibiotics in one hand and my hospital gown with another hand. I was a wild woman walking the halls.
Other people saw me doing it and they got out of their beds and walked too. So this type of stubbornness is catchy.
I've learned that no matter how horrible my experiences have been-- and I have a catheter in my abdomen. There is at least some other person who has had a worse story. I have a friend who lost a lung to Wegener's. I use her as a bad example-- and this woman just went "glamping" for her birthday recently. Her sons were some of the camp counselors. She uses me as a bad example.
A few years ago I finally told her that when I was at my lowest I would tell myself, "Cyndi is doing it with one lung." I get back on my feet and start again. I start again over and over every single day.
Normality is relative. For instance, when I was in great health before 2003 and the big disease. I would hike two to three miles every other day. I walked a lot and I pumped weights often. When I ended up in the hospital with failing kidneys caused by Wegener's, I was told that if I had been in less health, I would have died. Losing your kidneys is end game with this disease.
I went from being able to hike two to three miles to only be able to walk maybe a mile a day on a flat surface. I can even get off the ground with a lot of huffing and puffing, which would have been easy just before the illness.
So what is normality now? Normality is being able to live alone with my dog, wash my clothes, make food, and clean my house. Normality means I don't need a caretaker.
I can never go back to my 30s, but who can? I lost my 40s and 50s to the disease. Still I am here.
I've done a few things to keep myself from depression. Depression and chronic illness can go hand in hand. I meditate and I take walks with dogs. I laugh. I read.
Being able to laugh at myself has got me through the worst times.
The psychiatrists call this resiliency.
Let's be resilient together.