Finding Support Through Advocacy

FIND YOUR MARATHON OF SUPPORT

In this article, you’ll learn about how living with psoriasis has been a wild ride. You’ll find out:

 

  • What I’ve learned as a patient advocate for psoriasis
  • How to take the high road in life while living with a chronic disease
  • Ways to maintain a course to power through the difficult moments

POWERING THROUGH PSORIASIS AS A PATIENT ADVOCATE

Thank you for supporting our cause to empower others in our community

As you know, I’m Diane, and I’ve had psoriasis for a long time  I hope you can get a lot out of my blog. I named it “Power Beyond Psoriasis” because I have had psoriasis for over 55 years, psoriatic arthritis for 35 years, and fibromyalgia for three years. I want to share my journey with you; and trust me, I have plenty to share.

I am so glad you are here!  I’m living my best life in spite of all the challenges I have had.
I want this to be a place where we can all shared things that we are passionate about in recovery and in life.

I have been asked this question more times than I can remember: “What is psoriasis?”

 

  • My best answer is that psoriasis is an autoimmune disease that affects the skin.
  • Some of us will get psoriatic arthritis which attacks our joints, causes pain, stiffness, and swelling.
  • There are a variety of ways to treat this disease. One of the reasons this site is here is to help people living in Washington, DC find the right way for you to cope.
  • I am able to provide support for people all over the world, as well.

 

 

 

What I’ve Learned Living With Psoriasis and Psoriatic Arthritis

For those of you who are new to this site, I started having the symptoms of psoriatic arthritis at the age of 25 and developed psoriasis at the age of five. I’ve taken a personal inventory of my life and reflected on how it was and how it is now. I’m amazed and pleasantly surprised at how my life turned out for me.

Throughout my life, I have been thrown plenty of curve balls with this disease, along with unpleasant memories and some uncertainties that left me wondering what was really happening to me.

A few years ago, I made up my mind that I would take the high road. I always try to do the right thing. Years of being on the low road living with fear, anger, and uncertainties with psoriasis and psoriatic arthritis took a toll on me and I decided; never again.

 

Taking the High Road Has Opened Doors for Me

Since the age of five, I have seen a dermatologist. I was covered on over 70% to 80% of my body for the first 40 years of my life. I just didn’t get it, but I held onto my dignity at every doctor’s appointment that I went too.

Instead of losing control of this situation, I decided to do something about it. 

 

 

If I had decided years ago to take the low road, I believe so many doors would have been closed off to me. I’m happy I decided to take the high road all these years.

My Definition of Taking the High Road

What does the high road mean to me? It means I feel good about myself, and I don’t care what the other person thinks.

In my medical world and Diane’s glossary of diseases, the high road is a road that hasn’t been easy; but I know that this road leads to promise, a road filled with hope and optimism.

You can bend me all you want, but I will never break. This road never ends and every curve is made to be straight.

The low road is a road that can be very dark, sad, and leads to depression,  embarrassment and hurt. Many of us are found on the low road. My symptoms have often been very challenging which has had me lying on that low road.

I am in pain every day; however, I will not let it keep me down. 

 

  • I will do my best today to love myself. 
  • I will tell my stiff joints; don’t worry I will care for you today. 
  • I’m on the high road and that’s where I choose to stay. 

 

For every ache, pain, stiffness concerning my PsA, my body would know that I care. The other thing I learned is that the low road leads to a lot of sleepless nights.

Staying the Course 

Where does the high road lead me in my medical condition? It leads me to be strong and not let my emotions overcome me in my day to day activity.

I find the strength to go doctor visits and ask questions. It can be very challenging when you’re having a terrible day and can’t out of bed. I envision myself as a marathon runner in a get ready, get set position.

We’re all in the same position and how we take off is the key to good mental health.  I have chosen to take the high road because I know it’s best for me.

There is one thing I’m certain of and that is the unknown. I didn’t know I would get PsA at 25 or have psoriasis for 56 years of my life. I woke up one day with both diseases.

I could have stayed on the low road, but this road only ends up with not giving it your 100% most of the time. We, as human beings, are much stronger than we realize, and we must push through some things. Pushing for me wasn’t easy, yet I pushed and pushed and remained on a high road to get to where I am today.

This race is one that I will continue to run with strength and courage when the pain of psoriasis and psoriatic arthritis show up.  I will be able to cope, make it through and live my best life. 

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