In mid-June, while attending an amazing summer writing and meditation retreat, I composed the following. It’s a glimpse into what I was feeling at the time and frustration of having to deal with my autoimmune disease psoriatic arthritis all of the time and forever.
“I just want to be normal health wise. I’ve always suffered from something or another health wise. I’m weary of it (psoriatic arthritis), tired of taking this and that medication, trying every treatment medical and alternative. Nothing seems to work. Screw this. I’m tired of trying to eat healthy, why bother. Nothing works. Exercise, OK so then I’m in even more pain. Exercise or walk – HA I wish, my damn feet crack and bleed. Pain free days are so rare. Wah wah wah…“
Before we get some cheese and crackers to go with my huge whine, I don’t share my true thoughts and feelings out loud often. I’m grateful for health insurance and a multifaceted care team of practitioners, friends, family to support me in this journey.
My journey for resilience and quality of life and health is more like a marathon than a sprint. Somedays, I just want to throw in the towel and just give up. It’s a mindful choice to not give up and get up and go again.
The latest with my psoriatic arthritis is cracked bleeding feet. This started spring of 2020 and wasn’t too bad. A few small cracks and a little pain. Prescription creams helped some, then it got worse, WAY worse. All over my feet, deep painful bleeding cracks. So painful walking, yoga and exercise became intolerable. My hands also became inflamed with new psoriasis lesions. It’s called palmoplantar psoriasis. Yet another form of the disease my dermatologist informed me. Augh. More health issues.
Resiliency step one - Persistence for your wellbeing.
My mindset was, I KNOW there’s a treatment or remedy for this – there has to be, it’s 2020. I make appointments and seek treatment. My rheumatologist suggested I see my dermatologist since it’s skin related. OK, fine, I’ll make another doctor appointment….sigh.
My dermatologist suggested a medication that has great success and will clear up my skin. It may make you a little sick. Hah, a little sick!
Resiliency step 2 - Be flexible and ask questions
Be flexible to options
Flexible and ask questions about the life change, about a treatment, about your disease, etc.
The new heal your skin medication no matter what dosage made me violently sick. upset my GI system so much that I couldn’t leave the house. Good thing the pandemic was still going on and my life could be 100% virtual - says the resiliency coach between bathroom trips.
The doctor and I agreed for me to stop taking the medication. It helped my skin but as soon as I stopped my lesions became wider spread and larger with deeper cracks. My dermatologist was out of options for my skin. His suggestion for relief was to superglue the cracks, keep using the creams, and hope for a different treatment to treat the disease at its core by referring me back to my Rheumatologist.
Resiliency step 3 - Not taking no for an answer
Especially when it comes to your wellbeing
Saying no to things that make you sick or are unhealthy or toxic for you.
Not accepting treatment that make you violently sick or don’t relieve symptoms.
Resiliency step four– Do something radical and try something new
Try something new and/or radical for you & your wellbeing
Krazy glue the feet - Never in my life did I think that I’d need to super glue my feet together so I could walk. I wrote this poem at the summer writing and meditation retreat as a means of expressing and working through my feelings about my cracked feet and new life with palmoplantar psoriasis.
Cracks on my feet
by Teresa Q. Bitner
I glue my cracked feet back together with KrazyGlue.
Psoriasis on my foot is called palmoplantar psoriasis – who knew?
Psoriasis on the feet and hands
Pain like hot burning sands
The small patch quickly spread
I now know what to dread
Rough patches of skin, let’s exfoliate them away
Dermatologist said you did this? No way?
That’s the very worst thing to do! It aggravates the inflammation
He and the nurse say with exclamation!
That sure explains why it spread so fast
How long will it last?
Dr. says it’s the worst kind of psoriasis, it’s very hard to heal.
No duh, says my cracked painful heel.
Anger, frustration, pain, itching
I can’t stop my whining and bitching
How am I supposed to exercise and walk?
When my feet scream and balk
How do I now go about on a roll?
Comfy shoes, dorky socks and sandals, how droll
I glue my cracked feet back together with KrazyGlue.
The KrazyGlue method works – sort of – the feet are particularly flexible and humans are on our feet a lot. Super glue requires reapplication. It’s about a little bottle every 2 weeks to keep my feet okish to walk and exercise. It’s how I roll these days – a bottle of KrazyGlue with me and ginger steps I go.
Bonus resiliency step: Process your feelings & emotions
Journal, write, paint, draw out your emotions and feelings about changes and loss. It can be very helpful in processing what’s going on in your life. Just to get it out and allow the feeling and emotions ebb and flow.
I hope you find this illuminating and know you can survive and thrive even with life really seems like you can’t catch a break, rips the rug out, and you want to give up.
My hope is that you and yours are well. May you never be ill or effected with long term illness or autoimmune disease. If you do, be an advocate for your health, fight for your wellbeing, like no one else can.
If you do or know someone who has had life rip out the rug – may you find support, be flexible and find radical wellbeing. The next story of this journey will be the current phase of treatment and the impact on daily living.
I would be honored to support to build your resiliency or other skills. Please reach out and contact me. I love supporting my clients to get up and bounce back and live boldly. I have space for two clients as I’ve had three “graduate” to live their bold lives and a new client start.
Click here to reach out to me or set up a 30min discovery call.
Peace, and blessings,
Teresa – Grateful for flexible options, healthcare and support.
Teresa Q. Bitner, M.Ed., PMP, ACC - Resiliency, Change and Loss Coach
Partnering with those who have been knocked down my life and want to build resiliency and move forward and live a bold life.
Author of Soul Love: How A Dog Taught Me to Breathe Again &
The First Days Widow Journey