WELCOME

In 2019 I was injured and developed a complication known as Complex Regional Pain Syndrome, or CRPS. This disorder can manifest in so many ways, but the main symptom is severe, and I mean VERY severe, pain. Often times it can take 6 months or more to receive a diagnosis, so it was a surprise when I was diagnosed within a couple of weeks. There are 2 types of CRPS. The one I developed happens after some form of trauma to the body. At first it was just my foot and ankle. I had little to no mobility, and my foot was purple! Over time I came to experience so many different symptoms that affected numerous parts of my body. The disease spread from my right foot and ankle, up my right leg, and up my torso to my right waist line. For 3 months I did not take a single step with my right leg. My medical team grew to involve 2 primary doctors, a neurologist, 4 anesthesiologists, a pain specialist, a podiatrist, 2 orthopedic surgeons, 3 physical therapists, a chiropractor, an acupuncturist, a urologist, an otorhinolaryngologist, 2 psychologists, 2 psychologists, plus the countless incredible nurses who held my hand through it all.

In the 5 years since I was diagnosed, I have been prescribed countless medications in varying combinations in an effort to slow down the spread and manage the symptoms; especially the pain. I have also undergone numerous procedures including scopes, injections, infusions, surgery, and more. The medications of course caused a number of side effects, some of which have never gone away. My current regimen has been (relatively) stable. Through a lot of effort, discipline, life changes, and so much prayer, I am better than I ever have been.

This disorder disrupted my identity as a wife, mother, doctor, relative, and friend. I went from being a very active person with a successful work life and comfortable home life, to unemployed, often bed ridden, and in constant unrelenting pain. The incredible thing is that God can work all things for His good purpose, including CRPS. While I de-identified with my old self, and did not even recognize my limb as my own, I was able to find a new purpose and new identity. Suddenly, I was part of a community that I had only known through the experience of others. I was embraced by a population that is often rejected. Being a member of the disabled community has brought learning, growth, and blessings. It became apparent that having this chronic disease meant that I could gain insight into the life and needs of this community. So, in 2023, with the blessing of my husband and daughters, I started Navigate Disability Network.

We realized that we had learned so much as a family about what life is like for individuals with disabilities and their loved ones. There was so much we were forced to adapt to, including using adaptive equipment. I have gone through 4 canes, 2 walkers, 2 wheelchairs, 2 knee scooters, crutches, and forearm crutches. Each of these brought much relief and freedom to navigate spaces that I had not been a part of for so long. I learned that people are not "wheelchair bound" or "wheelchair dependent" but "wheelchair users". My way of viewing the world and even speaking about the disabled community has changed drastically. I was quickly humbled to find that even as a doctor, I was naive and ignorant to so many things about this beautiful community.

There is no telling what the future holds for me and my life with CRPS. What I can say is that I don't reject this part of myself anymore. I am still a wife, mother, doctor, relative, and friend; though these roles look different now. All of these involve advocacy, and yet, this side was not complete until I became disabled. Though I still live with constant daily pain, that pain drives me forward to help others in a new capacity. I hope to bridge gaps, inform, provide services, assuage doubts, give resources, and create connections for people with disabilities and their loved ones.

Will you join me on this journey?

 

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