Newly Diagnosed with Psoriatic Arthritis
A few weeks ago, I was enjoying my second cup of morning coffee when I got a text message from my neighbor, Georgia. “Can you come over?” My neighbors are an older couple. Thinking something might be wrong, I slipped on my Birkenstocks and headed over in my pajamas.
We often have early morning coffee together in our pajamas, so it wasn’t unusual. But this time, another neighbor was there. Georgia introduced me to Sarah and told me that Sarah had recently been diagnosed with psoriatic arthritis.
This disease hits us while we're down
Sarah told me the story of her diagnosis and, like many of us, psoriatic arthritis had invaded her body after significant stress. I shared with her that many of us find that psoriatic disease attacks after a death in the family, surgery, a severe illness or other stressors.
She had gone through all of those traumatic events in a matter of months. This disease had found it’s opportunity to hit her while she was down.
Diagnosis doesn't come easy
Sarah’s diagnosis was not easy to get. She wasn’t aware of any family history of psoriasis and had never seen any skin symptoms, so she was certainly surprised when she was diagnosed with PsA. Sarah had been experiencing knee pain for months and would often find that she had pain in other joints.
One morning, she woke up with two toes so swollen that she was unable to walk or put on a shoe. The doctor recognized her swollen toes as dactylitis, or sausage digit, which is common in psoriatic arthritis.
Processing it all
Sarah had so many questions for me that morning, but she was most eager to talk about the medication her doctor had prescribed. He wanted to immediately start Sarah on a biologic medication to stop the progression, and she was very nervous about that.
“What happens if I don’t take it?” she asked. “When the pain goes away, can I stop taking the medicine?”
I don’t know why she didn’t ask the doctor these questions. I can only assume that these questions occurred to her later, long after her appointment was finished and she was back at home. But I answered, the best I knew how, based on my own experience.
Sharing our own experience
I told her that there is no cure for psoriatic arthritis and, without the medication, we don’t know what kind of damage is happening to our bodies. I shared with her the joint damage that I suffered during the years that I didn’t have a medication to take for PsA prior to 2003. I told her about the surgeries I have endured to try to repair this damage.
Finally, I told her that I will always be on my medication because it noticeably improves my quality of life. When I have the opportunity to share my story with someone who has been recently diagnosed, I consider it an honor. When they listen and take my words to heart, it is a special honor, knowing that my challenges made a difference in someone else’s life.
Find validation in community
If you have questions about PsA or just need to vent in a safe community where people are connected by the common experience of living with PsA, the Psoriatic-Arthritis.com community is a great place to start. Join in a conversation or start one of your own.
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