This Isn’t Normal

Six years ago, I was diagnosed with a condition I had never heard of, despite living in the epicenter of fungal respiratory chaos. Three years ago, I learned that the infection had disseminated to the soft tissues of my leg, hiding behind my patella, clinging to my shins, and padding the soles of my feet. After a year of anti-fungal medication left me with nothing to show but bald spots and stomach cramps, I stopped taking the medication and I stopped seeing my infectious disease doctors. All four of them. After three years, none of them had done a thing to help.

Last week, a family friend who has been practicing medicine for decades learned that I once had valley fever titers of 1:64. Anyone who has had that level of infection, he insisted, needs to be on anti-fungals for life. I should be on high-dose anti-fungals now, and forever. Which would bar me from many things, such as pregnancy and silky smooth hair.

I asked my doctor to retest my titers, convinced that my internal state matched my external health. My hair has grown back, I have not problem keeping food down, and my health has been gradually improving. I’m convinced that I am fine, but I request the test to be sure, and so that I can move on.

Today, my doctor called and asked if I would like to resume anti-fungal treatment. I asked, “what is the level?” He informed me that my titers are sitting exactly where they were six years ago when I first became ill, exactly where they were three years ago when I began taking anti-fungal medications, and exactly where they were two years ago when I stopped. And this is concerning to me. I feel fine, but I know that I’m not.

I know from my 39 past infectious disease appointments that 1:64 means active infection. Those numbers mean that the infection has left my lungs and taken up residence in my bones, muscles, nerves, or even my brain. My body has a squatter and, after six years of its nonsense, I’m pissed.

My doctor prescribed a PET/CT scan that I already know my insurance won’t cover. He recommended that I restart high-dose fluconazole and resign myself to a life of dull, lifeless locks and constant intestinal distress. And I say that I’ll think about it and call back, which is a lie. If pumping my body full of poison didn’t work the first time, than why would it now?

This disease has cost me 2,160 days of my life, $49,000 that could have gone towards bigger dreams, and countless memories and friendships that I may never fully retrieve. And it won’t leave me. It’s like a child clinging to my leg. The steps are relatively effortless at first, but eventually become unbearable burdensome. I have tried gentleness, brute force, coaxing and bribes to get this bratty parasite to go away, but it seems only to cling tighter.

And I’m worried now because this isn’t normal. After seeing numerous doctors, trying everything from pharmaceutical treatments to intravenous oxygen injection, and making huge sacrifices to be able to afford the amount of sleep my body needs, nothing has changed. Deep down, I knew that the number had not changed. I wasn’t surprised at the results, but I was surprised at my disappointment. It is still there. I had pushed the infection to the back of my mind, but it is still here.

For the last several year, my life has revolved around healing. I sleep way more than my former overachiever self would ever approve of, eat never-microwaved veggies and fresh-from-the-farm poultry, and have given up an aggressive career path for a data entry job with low brain-drain and lots of paid time off. Every decision over the last three years has been made to regain health, to reclaim my future.

I miss hiking and cardio and yoga. I want to travel the world, write a novel, and maybe even stay up past 9pm on occasion. I don’t want to be told what I can’t do. I don’t want to be lectured on my body’s limitations. I want to thrust my hands into the sand and unearth the root cause, and I want desperately to make things right.

Today, I feel healthier than I have at any point in the last six years, and yet my inner reflection is still blemished and my body is still broken. And I don’t know what to do next.

4 thoughts on “This Isn’t Normal

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  1. If you ever need anyone to talk to about this (or whatever), I’m here. I know this has been hard on you. I’m sorry for that.

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    1. Thanks, Tim–I appreciate that, and I appreciate your continued friendship. 🙂 It is so frustrating, but I feel like I’m finally finding a rhythm and routines that work for me. I can’t stay up until 2am writing anymore (ha!), but lately I have the energy and mental clarity to write again… poorly, but with such joy and enthusiasm. My body is a mess but I’m okay enough now that I can laugh about it.

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  2. I’m glad you felt good today but I’m very sorry to hear it’s been such a journey… It’s tough not knowing when you will get better. Based on what I’ve read though, you have a very take-charge attitude and I feel your immense strength through your words (although you don’t always have to be strong). All the best!

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    1. Thank you so much for you kind words, bosssybabe! With time I’ve really come to believe that life doesn’t present us with anything that we can’t handled… I’ve had quite the journey, but I have learned so much from the challenges and–strangely–I wouldn’t change a thing. Wishing you all the best, also! ❤

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