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Nikki Luongo Headshot

My Life-Changing Diagnosis

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On June 4th, 2009, I made a costly mistake...

No, not the kind of mistake that ends up with a Dr. Drew special and me sitting next to a guy sobbing "I thought we'd be together forever." In this case, it was a simple error in judgment.

I drank from a water fountain. Simple enough, right? Wrong. In this case, one sip of water led to my downfall for nearly two years.

Biggest irony of my mistake: it was graduation day from college. I graduated proudly and thought of nothing but endless possibilities, traveling, and meeting Johnny Depp on an exotic island (alright, that's one I haven't quite given up) and a dream job in public relations.

Exactly four days later, on June 9th, 2009, I became so ill that even doctors couldn't determine my illness and over the course of that summer I saw nearly two dozen doctors, had over 200 appointments and was on nearly over 100 pills to stop stomach pains, headaches and nausea. It probably would have been less painful to be pregnant but not by much.

In fact, one of the medications I was put on knocked me out to the point of unconsciousness; I fell asleep on a Tuesday and woke up on Friday to find out both Farrah Fawcett and Michael Jackson had passed away.

Because of my subsequent illness, I pulled away from my life, from friends whom I loved and family who I had been extraordinarily close to my entire life; I couldn't allow myself to be vulnerable to them when I was already vulnerable to complete strangers, doctors, nurses and all those in the medical community.

I was forced to give up my dream of jumping right into the working world, of exciting brunches, drinking Bellini's with co-workers after work and traveling to Paris and Monaco, places I had dreamed so deeply of and could actually envision myself, in front of my own mecca, House of Chanel, trying to figure whether I could make a car payment or charge a pair of sunglasses.

I was told until we could get this mysterious disease under control, I was to remain at home and not to bother with employment because who knows how long this could go on? It could be six months, a year or I could still be sick in 2020 and because of this, I would have to live at home and be under, and I mean under, constant supervision.

That meant giving up my dreams of a sweet apartment with raspberry walls, black carpet and white couches; I had already planned where my framed movie posters would be placed and how to set up my DVD shelf.

It got to the point where I felt like a prisoner in my own house, although it may have been for my own benefit. I couldn't drive and I'm pretty sure my mother checked the mileage on my car every day just to make sure it hadn't been driven. I felt like a little kid, my mother had to take time away from her job because she wanted to know what was going on and my father was helpless because he didn't know what to do anymore than the we did, the only comfort he could provide me was Mickey D's shakes and an occasional DVD.

The only upside to the whole situation was I totally lost my appetite and lost about 10lbs.; granted the moment I got my appetite back, I put on additional 15, for one brief, shining summer I was thin again, but of course like with anything it was a fleeting moment.

My diagnosis? A stomach bug I got as a kid when I drank pool water, that I was sure I had gotten over because I had hadn't symptoms in about 20 years, had laid dormant inside my stomach and had suddenly came back with a vengeance, and then it was discovered I had no immune system to ward off that infection and any future infections. I would need white cell infusion treatments every four weeks for the rest of my life, which is less invasive than chemotherapy. People are ordinarily diagnosed with this after they are diagnosed with autism or have had pneumonia repeatedly but because I only had colds and sinus infections every other week, from September to late April, It was never a cause for concern.

From birth to age 24, I had a nice, normal life -- well, normal being the operative word -- but nothing had ever really rocked my boat, and exactly 12 days before my 24th birthday.

When I got sick, I just dropped out of sight like I was fugitive because I knew people wouldn't understand when I barely understood myself and I couldn't see dragging the rest of the world down with me, as much as I wanted to. And when I did explain what was going, when it was finally discovered what I had, which turned out to something I never quite expected in a million years and will now have to deal with for the rest of my life and into probably the next one, I tried the most basic way to explain what had happened but still people looked at me like I was typhoid Nik.

And then came the standard question for the next year: "Are you going to lose your hair?" which was a better question than "When are you going to find a job?" which is probably the most irritating question in the world.

I went through a range of emotions and experiences that changed everything I believed in, what I understood about myself and the world around me, what life can really throw at you and what's possible and that some dreams can happened, just a little altered.

So here I am at age 26, with an no immune system, no job and completely clueless about the future....

But having more fun than I could ever imagine..