Zebras in Small Business

Anyone else a small business owner and a zebra? I’m referring to the medical definition of zebra and not the actual animal. In the medical world, the term “zebra” is used to describe a rare medical condition. I personally hate that term because I don’t want to be a zebra. I would love to be normal, like the “big kids” as I jokingly tell my husband. Normal people like you that can keep up with regular daily demands of life and business. In honor of National Rare Disease day on February 29, I thought I would share a glimpse into my world.

6 years ago I was finally diagnosed with Specific Antibody Deficiency. I was 43 and had spent my life getting sick ALL THE TIME. I was frequently the recipient of “wow, you get sick a lot” comments from friends and family. Doctors did not know what to do with me. Turns out, my body does not produce enough or adequate IGG (immunoglobulins) to fight respiratory infections. Hence, my chronic battles with sinus infections most of my life to the tune of 5-6 a year and severe bouts of bronchitis. Up to that point, I was chronically sick and tired. I had been on multiple antibiotics every year for most of my life to the point I was becoming resistant. The fatigue was overwhelming! Think of how awful you feel when you start to get the flu or are just recovering from it. The nodding off during the day because you are so exhausted. This was me every single day, rain or shine. All the while hoping the next day would be better. Hoping I would feel better, have more energy to get things done and hopefully “this time” I would not get sick as someone walks past coughing or the kids brought home a bug from school. Shortly after getting this diagnosis, I began weekly at home infusions. The medication is derived from plasma and basically replaces the immunoglobulins my weak immune system cannot produce. Every week without fail, I have a date with my infusion pump and the couch. 3 needles poked into my stomach for an hour while the pump gradually pushes in the medication.

As a small business owner, what do you do? I’m not talking about what if something happens to you and who steps in to carry on or close out your business. I’m talking the day to day tasks. Many of us are a one woman or one man show. Sure, my spouse knows how to step in and contact clients if I get hit by a bus tomorrow but the day to day stuff, it’s just me and my furry staff that keeps me company in the office. If something does not get done, it gets added to the never ending to do list for tomorrow. My clients are wonderful people but at the end of the day, I have a service to provide. I don’t have time to feel bad or do I?

So what does this mean? For me personally, it means a lot of planning. I have a regimented schedule of when I shoot, when I do editing, computer etc. Thursdays are designated “no decision day.” Meaning no executive decisions are made about the business on Thursdays. Why? Because every Wednesday evening I have to do my infusions and every Thursday I wake up with what is jokingly called “the infusion hangover." To say you feel like crap is an understatement. Every Thursday I wake up feeling close to tears, exhausted, my body hurts and I am pretty sure a semi ran me over in my sleep. Every Thursday I wonder if this is the week I will quit. I’m going to close my business and do something else to which my very supportive husband asks “what would you like to do?” It’s Thursday, so check back in a day or so.

By the afternoon on Thursday, the heavens have parted and I start to feel human. I realize once again, I do not totally suck in my career choice and that I can keep going. Owning my own business has allowed me to schedule my shoots on the days I am at my best and allowed me to hide behind the computer on days I may not feel spectacular. When you state you own your own business people think it’s easy to call in sick or just take the day off. I can technically go home and rest, there is no boss to yell at me but whose going to pick up the slack while I rest? Nobody! I am the boss. If I don’t work, I will not have clients. If I work more than my body can handle, I will get sick. What do you do? I do what most people do and keep going.

Being an entrepreneur or small business owner is hard on a good day. It feels like mount Everest for those of us with a chronic illness. My advice, keep going. Tomorrow will be better. Don’t make important decisions when you are sick and tired or in my case on Thursdays. Most of all, give yourself some grace.

Consider donating plasma if you can. It takes a 130 donations to provide treatment for someone with primary immune deficiency for one year. We require it for the rest of our lives! Without it, many of us cannot function. If you already donate, consider yourself hugged by me! You truly are a lifesaver. Since starting infusions, I have only been on antibiotics for sinus infections less than 10 times in 6 years. Compared to my track record before my diagnosis, this is nothing short of a miracle. My quality of life has dramatically improved in the last 6 years thanks to the diagnosis and weekly infusions. I love what I do and the clients I meet. I really do want to be like the “big kids.”

I am so grateful to CSL Bering, the makers of Hizentra. Without it, I would not have been able to move my business to full time status nor would I be as healthy as I am today. Anyone else struggle with chronic illness? For more information on primary immune deficiency, visit the great people at the immune deficiency foundation - https://primaryimmune.org/. Follow #brandiblake for more photography tips, small business struggles or life with chronic illness. I’ve included a few pictures of my “furry nurses” who often keep me company while I do my infusions.