February 1 2017

Wisdom Wednesday – Understanding CPRS with Margaret Twitty

We’re big believers in Margaret Twitty’s favorite saying, “Know The Person Not The Disability.”  But sometimes, learning more about a disability is an important way to understand what others around us are going through.  With that in mind, we asked Margaret Twitty, founder of the 2/17 clothing line and Complex Regional Pain Syndrome sufferer to share her story with us.  Also be sure to check out her blog to learn more.

What is CRPS?

Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs usually after an injury or trauma to that limb. It is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.  CRPS is characterized by prolonged or excessive pain with a burning sensation and dramatic changes in skin color, temperature, and swelling in the affected area. Other symptoms include increased difficulty in sleeping, increased irritability or agitation, depression, and memory loss.

It is estimated that 80,000 people living in the United States are diagnosed with CRPS each year. A multi-disciplinary approach to treatment is recommended, consisting of care from physicians, pain management physicians, neurologists, psychologists, and physical therapists.

There is no cure for CRPS.

What was your life like before CRPS?

I was very athletic and very involved with friends and had a social life before I developed CRPS. I was involved in gymnastics from 3 years old until I was about 21. About the time I was diagnosed with CRPS, I was involved in different volunteer work and just busy with life.

How did you develop CRPS? 

In January of 2015 I underwent a regular surgical procedure for a bunion removal and a joint fusion on my right foot. Everything was going smoothly with my recovery until a few nights after the surgery, I woke up to the most intense pain I have ever felt. The pain was like someone was had put a lighter to my right toes.  When my mother tried to put an ice pack on my toes, it felt like sandpaper. It probably took at least 15-20 min for everything to calm down. Then it happened again the next night. That was when I knew that I had to go online and research my symptoms to see if anyone else has ever experienced this type of pain before. I found a website about a disorder called Complex Regional Pain Syndrome or CRPS.  At my next doctor appointment, I explained all my symptoms to him and he too, agreed with me concerning CRPS, and sent me to see a neurologist.  By then, my foot was changing color, like someone who had frostbite, was hypersensitive to anything touching it, had unusual hair growth, and my foot and toes had tremors where they just moved at random.  I had all the classic symptoms.

How has CRPS changed your life?

I don’t want to sugar coat things. It’s been 2 years since I developed CRPS.  I still have a lot of pain in my foot. I have some bad days and some good days. I have continued to experience many of the symptoms of CRPS.  Although, I am walking, which was a huge milestone in my recovery, and getting on with life, but just in a different way.  I do what I can, mostly from home, which is why I developed my clothing line. I am just unable to consistently work outside the home without experiencing worsening of symptoms. When I was still very ill, I kept telling my mom that I wanted to spread awareness about this disorder.  She gently let me know that I was in no shape at that time to be participating in anything except to focus on healing. I have now improved enough to be able to spread awareness.

What made you decide to share your story?

I had wanted to spread awareness about this disorder already when I was in the very early stages. Now that I am better, my way of doing that is to share my story. I want to increase awareness of CRPS and also want my story to help others on a more personal level. I want people to know I will ALWAYS be in their corner fighting for them no matter how long or how tough it may get.

What has the response been?

I’ve already been in a couple online articles, participated in a podcast, and over the summer I was in my local newspaper.  The response has been incredible. I’m learning that there are people here in my community that suffer from CRPS, but I never knew until my article in the newspaper came out. I have received emails, Facebook messages, an increased viewing of my blog, and comments on the article’s comment section. I’ve received an e-mail from a college student that wanted my input on a paper she was writing for a college course. So I can say overall the response has been amazing.

What is the 2/17 collection?  How did you become a clothing designer?

The 2/17 Collection is a collection that helps inspire and spread the word about different issues that people may be facing and struggling. After I was diagnosed I was looking for a way (many ways) to spread awareness about this very rare and very unheard of illness. So in 2016, I went on Twitter and got in contact with Statement Apparel the clothing company that my collection is attached to.

One of your slogans is “Know The Person, Not The Disability.”  Share with us what that means for you?

“Know The Person, Not The Disability” comes from a quote I saw years ago that just stuck with me. When people see a person with a disability, I want them to look past that and get to know the person.  Yes, people with a disability make look different and act differently, but they are just like anyone else with the same desires to be known by who they are, not by their disability.

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How do you think CRPS changes how you think about life?

I’ve learned that I’m stronger than I ever knew I was. I would sometimes wish that I could’ve had a better outcome, but after going through all the pain and heartache of being diagnosed with CRPS, I started to realize that maybe I was picked to be that 1 in a million person to have this diagnosis to help others who are also struggling and fighting the same illness as I am. Maybe I was picked to raise my voice to share my story and teach others about CRPS and how they can help in the fight to raise awareness.

How can we get involved?  How can we help?

I love that your website is Girl/Women based and that it has the elements of Health, Self, and Wealth. I love that you share what is impacting women everywhere. By sharing my story, we’re showing women that you too can overcome anything and be anything. I thought this diagnose iswas going to be my downfall, my weakness. But what I thought would be my weakness, I have decided to make it my strength. CRPS is a part of me. I have gone through this extraordinary journey.  I know I can use this journey to help other people experiencing this too.

Thanks Margaret for the inspiration! 

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