Katie Niemeyer, 41, Austin, Texas

GG: What sort of job did you have before getting sick (or were you a student, or fully unemployed?)

KN: I was a sophomore in high school when I got sick. I was a straight A student at a school in St. Louis.

GG: What is your disease/disability and how does it specifically stop you from working a full time job outside of home (list of symptoms, surgeries, medications that impair your abilities..)?

KN: I had Stevens-Johnson Syndrome (SJS) at age 16 which was an allergic reaction to a new medicine I was taking. I spent three weeks in the burn unit. The prognosis was poor, and my parents were told if I lived, I could be left blind. I had 2nd and 3rd degree burns from head to toe. I had dressing changes every day where they tore off my skin. I was given very little medicine to tolerate the dressing changes. I would fight and scream for them to stop. I would lay there and clench my teeth so hard I would chip my teeth. I was wrapped like a mummy, and you had to gown and glove to come see me.

I could not eat, could not see and could not be touched. Everything hurt. As bad as it was on the outside, it affects the same tithe tissues of your organs. I would fill canisters of gunk I would cough up from my lungs. I lost all my toe nails and finger nails.

I can remember seeing myself for the first time. This was difficult at age 16. Looking back though, this became an experience I was so grateful for. Going through something like this at age 16, you learn to appreciate the important things in life. It’s hard to have a bad day after surviving three weeks in the burn unit.

I am grateful for each day I wake, to not be in pain, to have my eye sight, the full use of my lungs, the ability to have children.

Or even the simple things, like eating and drinking. I can remember the first time I was able to get out of bed and use a bathroom. It burned so bad peeing from all the burns below, by when I went to wash my hands and feeling the refreshing cool water on my hands was something I will never forget. I stood there and just let the water run over my hands. Eventually I tried to pull my foot up to the sink. I wanted to feel it on my feet as well. Just the feel of water is a true gift.

Stevens-Johnson_Syndrome

Katie during her stay in the hospital..

GG:  How does the job you created allow you to work from home and on your own terms?

KN: I became a nurse after surviving SJS. I now work as a nurse anesthetist in Austin, TX. It is because of my great nurses who took care of me that I became a nurse. I got a chance to go back and visit the nurses who took care of me over 20 years ago. You can watch the movie on YouTube of the reunion.

GG:  Do you still encounter any challenges with your new profession because of your illness? How did you work around it?

KN: Last year while training for my firsts fathom at age 40, I created Handana. I have a lot of scarring in my eyes from SJS and have always tied a bandana around my hand to wipe sweat. My eyes are very sensitive and if sweat gets in them, it burns so bad, I cannot continue on my run.

To help with my problem, I created Handana. Handana is more than a sweatband. It is symbol to inspire you to cross our finish line and empower others along the way.

GG:  Do you work alone or with other people? How did you explain your situation to them, or did you have to say anything at all?

KN: I currently work alone. Handana has been on the market for a little over a year. Handana is sold throughout North America. I do have a PR intern, bookkeeper, accountant, attorney and business advisor.

GGP  How do handle necessary benefits like insurance that comes with normal 9-5 jobs? Did you use a spouse’s insurance, a parent’s, or did you use government funding?

KN: My husband and I have carried our own health insurance for about six years now.

GG: What is an average day like for you at your new job?

KN: I work on the computer for about an hour in the morning before I go to work as a nurse anesthetist. I work at my anesthesia job from 6am-3pm. I come home and do about three to four more hours of work with Handana. I spend about eight hours each day on the weekend with Handana as well.

GG: What advice do you have for other patients looking to start a new kind of job that fits around their illness?

KN: Start with going from A to B. Don’t try to figure out how to get from A to Z. This will overwhelm you, and you won’t move forward. Just take the first step.

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