My Journey to a Lupus Diagnosis, Part 1
“You have lupus.”
Three simple little words that can drastically change a life.
For most, being diagnosed with something like lupus is actually a relief. While that probably sounds crazy to some, those who have been there, understand. When you have spent years of your life having health issues that no one could diagnose, getting a diagnosis is almost freeing. It is an amazing feeling to know that you are NOT crazy, and all the issues you have been dealing with do actually have a cause.
I was never in good health
For me, it was no different. I had a long list of health issues for years that no one ever seemed to be able to pinpoint. Granted, having lupus is not really a good thing. But just knowing that there is a cause for all the things you have been dealing with is a relief of sorts.
Lupus is one of those conditions that many people don’t really know much about. I was one of those people. I had heard about lupus for years but knew little about it. That is until I was faced with the diagnosis at the age of 26. For YEARS, since I was a kid, really, I had health issues that no one was ever really able to diagnose. I often had less energy than others my age, no matter how active or in shape I was. I always seemed to be more tired than those around me. Most days I would prefer to sleep rather than doing something fun. I have always gotten sick more frequently than most, but truthfully I always just chalked it up to being busy or to the fact that I worked around sick people every day.
Little did I know that there was actually a reason for all the issues I was dealing with. It wasn’t just because I was busy. I can’t tell you how many times I was asked over the years why I got sick so often. I never really had an answer, I always just replied, “Who knows, it’s just me I guess!”
I was hospitalized for 5 days
In early February of 2012, I got a respiratory infection for what felt like the 500th time that winter. This one was different though. I found myself really struggling to get a good deep breath and felt like I could never catch my breath. The constant coughing was INTENSE. I actually ended up hospitalized for 5 days. During that stay, I had a multitude of tests as the doctors tried to figure out what was going on.
By the time they sent me home, I really had no more answers as to the problem at hand than I did when I went into the hospital 5 days prior. Sadly, the symptoms did not improve and I ended up having to take an entire month off work. At this point, I was put on high dose steroids which seemed to be the only thing that made me feel even minutely better. But this was the beginning of the end in some ways.
Blood work pointed to lupus
That stay as I said was kind of the beginning of the end. What I mean is that this was the end of the years of questioning and wondering what was going on in my body. After being discharged my symptoms really never improved.
Months later I was still having many of the same issues, as well as incredible fatigue and joint pain. These were new to me. In the spring of 2012, one of my doctors decided to run more blood work, kind of a last resort. Much to our surprise, the lab work came back positive for lupus. While it was shocking, it made total sense. What the research didn’t tell me was how my life would change over the coming months and years! Check back soon for part 2!
Does your employer provide workplace accommodations due to your lupus?