When You're Labeled As Lazy Because of Psoriatic Arthritis
I wished I had something else, but I don’t. I've asked God countless times why? Out of all the millions of people in this world why did I have to be the one with this agonizing disease?
But, overall, I have learned to accept it and live each day as it comes. I have had psoriasis since I was 5 and started having symptoms of psoriatic arthritis at the age of 25. I started developing painful joints in the mornings and couldn’t raise my arm to comb my hair. I also noticed that during certain seasons, such as the winter, it was worse.
How could I have ever prepared for PsA?
There was no one in my family with this illness, so I had no one to turn to for guidance. I was not adequately prepared for everything that was coming down the pipeline at me. I thought I was ready for everything, but I was wrong.
My career and life seem like it was being taken away from me. I used to run track and loved working in the garden before developing psoriatic arthritis. The sad part is that I had to give up running track and was never able to resume being back to normal since the disease struck.
How is every day different?
Everything depends on how I wake up in the morning. If I wake up in severe pain, I will spend most of the entire day indoors. If I should happen to wake up pain-free, I try and get as much done to make up for lost time. My days are usually unpredictable, which makes my life difficult because you can't schedule my days or plan anything.
Because the pain is so severe on some days, I have to rely on my husband to meet my every need. I feel like a child or elderly person, this can be demoralizing. Sometimes brushing my teeth or putting on clothes has become difficult because stretching or folding my wrists and joints is excruciatingly painful. But I'm lucky because my husband is always there for me and understands my pain.
How do treatments get in the way?
I decided to retire because I just needed a break. I got Medicare, but still have to put out thousands of dollars for the treatment. This is another whole story. If I knew then what I know now; I would have continued working with my pain. I want to get on a biologic. My co-pay is $8,000. Of course, I can't afford this.
Most of the drugs I've used have had negative effects on my body, including my kidneys. I am on methotrexate which is helping the PsA. We are all different and our bodies react to things differently. I spend most of my time going from one doctor to the next. Taking drugs, slowly and painfully getting out of bed each morning. Just trying to take anything until the pain subsides.
How do others respond?
The most irritating thing is when my friends and family think I'm faking it and constantly label me as lazy. Some think I just don’t want to be bothered by them which hurts my feelings. I'm on plenty of medications right now which have made me feel much better. I have been waiting for 60 years for a cure for psoriatic disease. I believe I can see some light at the end of the tunnel.
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