My Experience with Palmoplantar Pustular Psoriasis
Have you ever wondered, “God, what are you doing here?”
Last summer I had some spots of dry skin on my hand that began spreading and grew really itchy and inflamed. It got so bad I went to see my family doctor who referred me to a dermatologist and I was diagnosed with psoriasis.
Psoriasis is an autoimmune disease that attacks your skin. It will be part of my story for the rest of my life because it is incurable. But it can be managed.
Management was what I was hoping for when I left the dermatologist’s with a fresh prescription and fresh hope. But the cream didn’t do anything. In fact, the patches kept spreading across my hand and then to some spots on my other hand. My hands became red and inflamed, my dry skin cracked open, and the constant itching made me feel like I was going insane! My swollen and broken hands fumbled through simple tasks like opening a bag of chips for my kids. Washing my hands reduced me to tears. I gritted my teeth against the pain as I drove to appointment after appointment.
It’s been hard and painful and, unfortunately, psoriasis is still very present in my life.
You probably have something in your life that is really painful too. Maybe it’s not something physically, but it’s something emotionally or spiritually. Or maybe it’s a relationship that brings you pain.
There is a man in the Bible, Paul, who also had an unrelenting area of pain in his life. In one of his most personal letters he wrote this about his suffering.
Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”
2 Corinthians 12: 7-9 NIV
Paul has been given redemption through Jesus, an incredible ministry sharing the gospel, and even the experience of a “words can’t describe” vision of heaven. But Paul also has something called a “thorn in his side”. Something He begs God to take away from him.
And we don’t get to know what the thorn in the side is. That’s a little annoying, right? I mean I am curious. I would love for Paul to spill the tea and tell us exactly what it is that he is struggling with. But he doesn’t and there’s a compelling reason why.
The thorn in the flesh is deliberately vague so that you and I can copy and paste our thing into this truth.
Because most of us carry pain in our stories.
And maybe like me, like Paul you’ve cried out to Jesus to heal your pain. Wouldn’t it be so nice, so easy if God chose to resolve this conflict right away? God answers Paul’s request differently than we might expect.
My grace is sufficient for you, for my power is made perfect in weakness.
2 Corinthians 12:9 NIV
God didn’t say yes, but God didn’t say no. He said my grace is sufficient. In the painful places of our lives, God promises His grace is going to show up.
That word sufficient means enough, satisfied, content. My grace is enough to content you. It also carries the idea of a barrier or a wall–my grace is strong enough to keep you safe. Even when we are at our weakest.
When I read 2 Corinthians 12, God reminds me He had a purpose for Paul’s pain and today He’s doing something with my pain in my story too.
And the healing, the resolution to my pain, the answer to my question “Why is this happening to me, God?” may never be answered in the way I hope. Instead God desires to turn my infirmity into a spiritual asset.
My weakness gets to be a channel for His greater grace. His favor and kindness flow to me in a new way as we walk through the pain together.
Knowing God’s grace changes my question “God what are you doing here?!” from an accusation to an inquiry, a curiosity.
- “God what are you doing here?”
- “What are you doing in me?”
- “How can I see your grace showing up for me in new ways?”
Whether the “thorn in your side” in your story is a disease, an aggravating ex, an air conditioner that just quit, your toddler’s attitude or your teenager’s attitude–God promises His grace is enough for whatever your day holds.
Adele Ahlberg Cohen puts it this way, “In the unfixables of our lives we are invited to keep company with Jesus and take a risk that God’s intentions toward us are good.”
It can feel risky to believe God is doing something with our pain and unfixable situations. While I pray, work and wait for healing in my body, I’ve felt frustrated, helpless and confused.
But also, God’s grace has shown up.
His grace has formed new pathways of trust as I walked this valley. It’s shown up to protect me at my weakest and to content me as I wrestled through my untidy questions. His grace has shown up again and again in my parenting, my marriage, my work, and my friendships.
Because of Jesus, our stories of pain can become beautiful places where grace shows up.
You can watch me speak on my Psoriasis and Thorns in the Flesh here. I gave this message at my church in June of 2022.
My Psoriasis Treatment History
A quick timeline of my psoriasis treatment and diagnosis process.
August 2021 – Patches formed on my hands.
October 2021 – First visit to dermatologist. Steroid cream prescription.
December 2021 – Begin therapy for stress management at recommendation of dermatologist. New stronger steroid creams and I take a 10 day course of prednisone which clears my skin, but only while I am on it. Patches are spreading and cracking. 50% coverage on my hands and a few other small patches on my legs and ankles.
January 2022 – Psoriasis continues to spread across my hands. Recommended for light therapy, but wait on insurance to approve.
February 2022 – I take another round of prednisone so my hands can be cleared for our family vacation at Disney World. My hands clear on the trip, but afterwards the psoriasis flares worse. When we come home I start light treatment and am almost unable to do anything with my hands they are so swollen and inflamed. I begin antibiotics. I receive a punch biopsy which comes back positive for psoriasis. I do light therapy twice a week.
March 2022 – At this time I resigned from any commitments outside my house. We don’t put the kids in spring activities all in an effort to mitigate my stress to help with my inflammation. I continue to have intense flairs and use light therapy and steroids for treatment. I have psoriasis patches on the soles of my feet. I have psoriasis coverage at close to 5-10% of my body. I also have some inverse psoriasis which leads to a prescription for a biologic medication.
April 2022 – I complete labs to approve biologic. I have a liver ultrasound due to heightened levels. I wait two weeks and receive lowered lab numbers so we can move ahead with the biologic. I am released from talk therapy by my counselor who is happy with my stress management. Psoriasis continues spreading on the bottoms of my feet.
May 2022 – I am approved for biologic, Skyrizzi and apply for coverage through their assistance program. I am still using steroid cream and see slight healing (white skin!) on the center of my palms.
June 2022 – I begin Skyrizzi via injections with loading dose on June 15th. My feet are covered in psoriasis–I rarely wear sandals and begin to have pain when walking. I regularly take Benadryl and Zyrtec to help with itching.
July 2022 – I take second dose of Skyrizzi. Kids and I resume regular activities as cessation hadn’t affected my psoriasis. This was a hard month for me emotionally because I had thought I would be clear by summer (especially with getting on a biologic), but I wasn’t.
August 2022 – I am getting new outbreaks on my skin on my back and underarms and return to dermatologist. She advises to stay current biologic for at least 6 months.
September 2022 – I take my 3rd dose of Skyrizzi. Continue to have pain in feet making walking difficult. Hands are clear 5 days a month and seem to rotate on a 4 week cycle. I wean off steroid cream.
November 2022 – I visit Fort Wayne Dermatology for second opinion on my treatment. I switch to Tremfya biologic and take loading dose in office. I have 20% coverage of psoriasis along with some eczema and rosacea.
December 2022 – Begin using CBD oil and coconut oil topically along with a probiotic lotion and soap topically. Submit paperwork for Tremyfa financial assistance. Begin to notice achiness in joints at the end of the day.
What’s it like to live with psoriasis?
Painful and itchy. The itch feels like the worse case of poison ivy you’ve ever had. I sometimes experience burning pain in my psoriasis patches. Both my hands and feet have painful micro-abrasions (like small papercuts) where the dry, thick skin breaks open and cracks.
It can also be discouraging because there is no ONE PATH of treatment that everyone’s psoriasis responds to. And there is no ONE THING that triggers psoriasis in everyone. So healing isn’t simple or straightforward.
How Can I Help When Someone I Love Has Psoriasis?
Listen when they want to vent about their disease.
You don’t need to offer treatment ideas. Diet recommendations are not helpful either.
Prayer support is helpful– as is practical assistance, like babysitting or a meal or opening their water bottle when they need a little extra help.
When in doubt you can always say something like, “I feel so bad you’re experiencing this–I’m always here to listen, but is there any way I can practically help you through this situation?”
Resources to Help with Psoriasis
The National Psoriasis Foundation — General information and they offer free samples of products from a variety of companies.
Women with Psoriasis Facebook Group — Support, ask questions, hear about treatment options. For women only and covers all types of psoriasis.
PPP (Palmoplantar Pustular Psoriasis) Worldwide Support Group on Facebook — This is the group I reference most often! A great resource and community for my most intense type of psoriasis.
