Me And My Psoriatic Arthritis Journey

As I look back on the past 65 years there is so much of my journey I want to tell. I don’t want to take this information with me. Way too much to share.

What don't people understand about psoriatic arthritis?

What do you find is the most challenging part of having PsA? Right now, I’m older so people expect me to fall apart. But what about when you were in your 20s? For me, it was explaining to people what was going on with my body and people judging me and thinking I was lazy.

People don’t understand that you don’t have to be old to fall out of bed. There have been times when the pain wouldn’t allow me to get up and I needed help from others. I couldn’t zip up my dress or tie my shoes. It was hard.

I started having symptoms of PsA at age 25 and got psoriasis at 5. Unfortunately, friends stopped coming to visit, I missed time from work, and was passed over for promotions. Trust me, the list goes on.

How has it impacted my family?

I was a grandmother in my 40’s. Some days it was so challenging to hold my grandbaby without being afraid of dropping her. My time playing with her was few and far and in between. I was so happy when my second grandchild came along to take some of the burden off of me. They could play together.

How has it impacted my work?

I worked in an office environment. Most people would love this, but not me. I found it difficult to sit all day and enter information into a data system. There were days my fingers were hot and swollen and hurt badly. My lower back would hurt to the point where I couldn’t sit for long periods of time. I was passed over for promotion because my bosses thought I lacked motivation.

Has it all been a negative experience?

This has been a difficult journey, but not all gloom and doom. I started advocating for myself and have made some lifelong friends who have carried me a long way. There are people who understand what we are going through and know how we feel.

How has my medical care been?

You know it took me 25 years to get diagnosed with PsA. When the rheumatologist did all the tests, he immediately said I had PsA. I have been on medication ever since then. I was on anti-inflammatory drugs to start, which helped with the pain, but I was soon put on a biologic, which does great for the psoriasis, but not the PsA. So, I take a separate drug for that.

What advice do I have?

For all of us that are going through this, you know who you are. I know for a fact that having this illness is not for the faint of heart. My parting words would be to listen to your doctor, lose a few pounds if you have to (I lost 60 - it made a big difference for me), and exercise. When I say exercise, I don’t mean lifting weights or trying to run track.

For me personally, I can’t lift anything. I tried going to a physical therapist, but she had me in tears. You know your limitations; I bought a stationary bike and I try and walk 20 minutes a day. The only reason I go for a walk is because I just recently got diagnosis with osteoporosis and my healthcare team said that walking is better for that.

I am a true believer that we are all in this together. But I also believe that we can learn from each other.