Are You Prepared For Psoriatic Arthritis?

Even living with psoriasis since the age of 5, I was not prepared for the agony that psoriatic arthritis brought to my daily life. I don't think anyone can be fully prepared for a chronic condition. I lived with psoriasis for 20 years before PsA symptoms began appearing.

Adjusting after a long road to diagnosis

I remember waking up the minute my feet hit the floor I felt intense pain in my heels and ankles. It brought tears to my eyes. Many doctor visits later - and I mean many - it took 25 years for me to get an official diagnosis. 

After x-rays and blood tests, that rheumatologist put me on some medications that didn't work well. We worked together and switched them several times. I'm in my early sixties now, even the current medication I'm taking makes me feel nauseated, uncomfortable, and depressed at times.

My doctor and I are in the process of switching to another medication. As we all know, what works for one, might not work for the other.

In those early days after diagnosis, I kept moving and worked in an office. Soon enough, it became too much. As of now, I work from home. I just couldn’t take the standing and consistent moving. The joint pain, stiffness, fatigue, brain fog, and swelling were too much. Just holding on to things was difficult.

Pain is always a consideration

It was on my mind to retire, but we are still paying for our dream home and I didn’t want to put an added burden on my husband. I still try to enjoy life - I liked to hike, travel, and camp with my friends. But my pain is always a consideration.

There are times when things take an unexpected turn and we must adjust our plans - depending on how severe the pain is. Making plans is out of the question for now. I have an understanding husband of 25 years who accepts me as I am. He does a lot for me, and I can’t thank him enough.

Life with psoriasis and psoriatic arthritis is a roller coaster. One day you're fine and feel great, and the next day you can't get up to take a step.

Psoriasis arthritis is constantly getting in the way, and the stress and depression it causes in my life are extreme. I have devised new ways over the years to adjust and make changes in my life, particularly working at home and with my family. For example, whenever I'm feeling great and anyone needs me, I make sure I'm there for them.

The power of community

I'm still fighting this illness. It’s been decades now. Sometimes I think I'm fine, and other times I'm convinced I'm in bad shape. Some medications work, but after a while, they wear off. 

My doctors are still trying to figure out a combination of drugs that will reduce my inflammation. The most important thing I've realized in this life is to find the importance of finding a good balance and working hard to reduce pain and fatigue.

I'm hopeful that this disease will not prevent me from caring for and spending time with my family and friends. I would like for our community to keep growing and to share the knowledge we have learned over the years.