My Psoriasis Spelling Game

Let's play a psoriasis spelling game about what I know about the disease! You might know about using a mnemonic device to try to remember the spelling of a word if you do then you will understand my story. Take the word psoriasis for example: P.S.O.R.I.A.S.I.S.

I want to share what the word meant in the beginning and what it means to me now.

What psoriasis meant to me at first

"P" in the word of a disease I was just being introduced to in 1996 stood for some sort of physical disease. A disease that I have. In the word, the letter was silent. In my life it was screaming physical changes!

"S" was easy enough to recognize as scales. My body was getting covered in weird silvery scale patches that seemed to start out like a pin drop and spread to majority of my skin surface melting from one into another.

"O" stood for open sores. Tiny paper cut like sores and cracks in the middle of this scaled skin. They bleed and sting creating soreness and pain. Outstanding chunks of what was once healthy now were layers.

"I" was next and this only made me think of one word: itchy. A feeling of hundreds of mosquito bites all over my body. An unquenchable itch. Itching that didn't cease unless you were asleep and even then I would wake with evidence that I had scratched at night.

"A" became the feeling that I felt most with this skin disease. Aggravation! So many questions, concerns, and things I wanted to say and know about once I finally had a name for what was ailing me. Six long months of dealing with a disease I had no name for until I suddenly did! It took one physicians assistant and five months to tell me what was wrong with me.

"S" was for so many things at the time of diagnoses: skin disease, soreness, symptoms but sadness was the one that defined it all for me. At 22 years old and newly married, I was worried about my future. I felt like I had been hit with something that felt like a lifelong death sentence.

What psoriasis means to me now

It was really challenging when I was first diagnosed with psoriasis. Knowing there was no cure and it was seemingly difficult to find out more information about. My life changed with an advertisement in the newspaper. I answered an ad asking if I had psoriasis and my world opened to new information and to a family that would always support me. Now my thoughts have changed, here is my new mnemonic device.

"P" stands for learning about my disease and giving myself power. Finding out what the disease was about and what we know this far helped me to feel that was not lost. There were others who were on the same journey as I am.

"S" stands for symptoms of psoriasis. I found that there were common symptoms that others shared. Many things changed and I felt validated in what I was dealing with.

"O" still stood for open, but it stood for being open with my doctors, family, and friends. My choice to share my journey with those who cared for me and walked the journey with me made the journey a bit easier with the right support.

"R" stands for an important thing for me: recovery. Knowing I have the disease has taught me to allow myself time to recover. Learning my limits and what my body could tolerate made me see when I need recovery time. A time to pause and reflect on my symptoms working out ways to recover.

"I" stands for invention. This letter is so important oh look there's another word! Invention of discoveries of medication, therapies, laws making psoriasis important and seen by others.

"A" stands for advocacy, both for yourself and your health is essential! Sometimes you need to look out for yourself and remind others that you are in control of your own body. That includes choices about your health. You have a voice to stand up with. You can speak out for yourself at the doctors and with legislature.

"S" stands for sharing. It has been the way I tell my story. My journey has brightened and lightened my load being able to share my psoriasis journey. Healing has come from this.

"I" stands for I. This letter is one of the most important of all letters. I. The very being who has this disease. Do not forget that you exist you have a disease, but you are not a disease. You may have a different life than you used to but you are fundamentally still you.

"S" stands for survivor. It's true I am a survivor. For every day that I feel poorly I know that I have made it through those times and will continue to.

Do you see the hope?

I hope you can find a mnemonic device for your own life. Periodically look at it from time to time. See if it changes. Do you see the hope? I do.

The thought of where I was with hardly no one even knowing what psoriasis was to today being able to see commercials is amazing. Knowing who my true family and friends are on this journey has given me the ability to call my friends family too.