I am at a place in my life living with psoriasis and psoriatic arthritis that my language and dialogue will begin to sound new to me. Many times in my life my conversations were very dry, old and short. I found myself focusing on my past. I was tired of talking about yesterday’s suffering and wanted to focus on today’s accomplishments.
I soon learned that talking would be what would help me the most. I wanted to talk about what I’m going to do today. I wanted to talk about my pain, my stiffness, aching joints and always being sore. I wanted to talk about who is truly my support system.
Let’s get the word out
I found at times that I was scared of not saying the right thing. Suppose I say one thing and you understand it another way. My language is very important to my everyday life. The more people who know, the better. It was time for me to step into a new arena of my language. I want people to know that psoriasis and psoriatic arthritis is a disease that has real symptoms, real pain, real suffering and affects so many of us around the world. People have heard the word psoriasis, but don’t have a clue how it affects us. I have lost count of how many times I have had to say, “I’m not contagious, my immune reaction is just out of whack.”
When pondering on my disease, I want to give an overview of what I go through. It’s more than flakes, joints or muscle aches. We as patients aren’t able to take an aspirin and everything is going to be okay in a few minutes. No, we have to be prescribed biologics, pain pills, lotions, creams, canes, wheelchairs, etc. It affects every aspect of one’s life. It changes your freedom to just get up and go whenever an urge would come on to do so. There are days we can’t get up at all.
Hope for the future
As for the future, I anticipate great strides in the medical research to find a cure. So many new drugs have come down the pipeline in the past ten years. Change is so important and is almost what we as patients anticipate for our future. My conversation of being a patient is looking to the future and desiring new conversations; new medicines, new treatment, new drugs, new health laws.
I feel that if I change my conversation in my own advocacy work I can look to the future with optimism. Positive things will begin to show up. I would let go of past hurts, past failures, past disappointments. I realize to hold onto all this only brings unwanted stress to my body. This is not good for me or anyone else that is suffering as we are. I’m willing to change my conversation in this season and I give myself permission to live.
It’s rare these days for me to go a day without pain. My mornings are usually confronted with morning stiffness, soreness and taking forever to get out of bed. My fingers are always swollen, very sore and legs are in pain. I’m taking the measures to make myself as comfortable as possible. My flare ups are showing up more frequently.