“You’re Not Crazy, You Have Lupus!” – Stacey’s Story

Guest Post By:

Stacey, the creator of the witty and endearingly confessional blog, Lupus Crazy.

Jaime A. Heidel, a fellow blogger, asked me to write an article that she would feature on her blog. (My 1st guest-blogging gig, woo hoo!) She wanted me to chronicle the symptoms I experienced prior to finally getting my diagnosis of, “You’re not crazy, you have lupus”.

 

It’s an honor to write this article and unite with her goal of wanting to help others who might be experiencing similar early and perplexing symptoms but are not yet sure if lupus is the cause. 

 

In order for me to begin, I need to take pause and recollect on what my life was like, what I was able to do, and basically who I was pre-lupus. (I’ll admit I try hard to block memories about that time in my life. I’ll share the reason why later.) 

 

For now, I must ruminate on that time because the beginning symptoms of lupus are what started my life-plan and dreams to veer off course, without any input from me—and that is a big deal for a control-freak like me.

 

Roughly 15 years ago, I distinctively remember taking notice, an inventory of sorts, of what was going on with my body. Keep in mind, I was not “officially” diagnosed with lupus until three years later. 

 

Thinking back prior to diagnosis, when exactly did all the symptoms start showing up? What were the first body indications that led me to test positive for lupus, finding out I have lupus nephritis, needing pain management to cope with the day-to-day unrelenting pain, and forever being branded as a person with a chronic illness? 

 

Was there ever a definitive start to it all? By “all”, I’m referring to the symptoms: constant fatigue no matter how much rest I got, skin rashes provoked by excessive sun exposure, migraines, joint pain, declining motivation, depression, and malaise. 

 

I apologize to report that I cannot pinpoint a clear moment in my life, and I hope that does not disappoint or frustrate you. Lupus is tricky and sneaky.  It is often labeled a “designer disease” because lupus is experienced differently by everyone who has it. 

 

Lupus does not fit into a medical mold or template, where it is easily identified by doctors. Surely frustrating both us (the patients) and the medical community.

 

My lupus symptoms trickled in ever so slowly, ambiguously, and annoyingly, I may add. 

 

My symptoms certainly did not make a grandiose, diva-like entrance, with lupus tossing her purple feather boa over her shoulder pronouncing, “I’ve arrived, where shall I unpack? And, darling, we have got to do a COMPLETE makeover of your life.” (I’m sure it’s obvious that my lupus is female and overly dramatic.) 

 

 

Before I began writing this article, I purposefully put on mascara. The reason being that if I cried, my mascara would streak down my face. Of course, nobody wants that. Crying is one thing, but ruining your eye makeup is altogether unacceptable. 

 

My mascara theory was based on willing my watered pain to stay in my eyes (where it belongs). Since the topic of this article is lupus, specifically my lupus, in order to do it justice, I will need to share my pain with you, because my lupus hurts (physically, emotionally, mentally, psychologically, and every other which way you can imagine). 

 

I apologize if this is unsettling. Please don’t allow it to deflate your hope for living well with lupus, because that is absolutely attainable and possible. I promise you that lupus affects everyone differently. Some folks only have the skin version (discoid lupus). Whereas, I have systemic lupus erythematosus (SLE), but, I’m getting ahead of myself. 

 

Shortly after my 30th birthday, my once-endless supply of energy started dwindling ever so subtly. Before that, I had copious amounts of energy, and it was difficult for me to sit still.

 

Watching a movie from start to finish was practically impossible, and I would often take breaks, for example, to scrub the kitchen floor, organize something, or tackle another mundane chore.

 

I believed my inability to sit still was a good thing. A gift of oodles of energy. Energy is where my lupus journey began. Rather, diminishing energy was the first hint that something was awry with my body.

 

A little history of me: During the summer of 2002, I moved from California to Maryland with my new husband. Because I (we) had recently lived through two major life stresses, getting married and moving, I wasn’t overly concerned about my sudden, diminishing energy. I merely took note of it. 

 

After a few months, I was growing annoyed about my fading vitality. Honestly, I was scared I was losing my identity. You see, I am a trained contemporary dancer with a bachelor’s degree in dance performance and choreography. 

 

When I got married, I took a year off of dance performance, but my plans were to jump right back into it after we moved. When my twelve-month dance break came and went, my desire to get back into the studio was present, but my drive and vigor failed me. 

 

 

That is when my concern evolved into fear.

 

I never bothered going to a doctor about it, though. I don’t know why.  Perhaps it was because I lacked faith in doctors. Maybe it’s because they never took my words, vague symptoms, or concerns seriously. Basically, I didn’t have a good track record with doctors. Why bother going to one if I knew the end result would be a waste of time?

 

I distinctly remember that I no longer felt rested after sleeping or anytime really, for that matter. I dismissed my dwindling energy to a consequence of premature aging ungracefully. A nagging inner voice insisted I get back into dancing. 

 

“At least go to one dance class, for goodness sakes,” the nag repeated. I couldn’t even muster up a smidgen of motivation. 

 

 

One year prior to my dance break, it was common for me to dance a couple of hours a day. What changed so drastically in a year’s time?  I wanted to keep dancing. That was always my plan. Dancing is (was) my passion. I finally found my calling in dance—or, so I thought. 

 

When I couldn’t beg, bribe, drag, or threaten myself to attend at least one dance class, I knew something was wrong, but I didn’t know what “it” was. 

 

While seeing a doctor to report my issues and concerns was initially out of the question, that all changed during the winter of 2005. Drying off after a shower, I noticed a purplish rash on the tips of a few of my toes. The purple areas were tender to the touch. I figured that I must have stubbed my toes without realizing it. No big deal. 

 

Fast-forward to about four to five days later, and I realized my toes did not look any better. Actually, they looked a bit more purple. That was alarming.  I was convinced the purple stuff must be some kind of rash. Gross! Ick. Time for a dreaded doctor visit. Oh, joy. 

 

 

(Now, go get yourself some popcorn and get ready, because this is where my lupus journey “officially” began.) 

 

I made the dreaded call to the doctor’s office, telling the receptionist about the rash on my toes. That doctor appointment swung my life plan upside down. My primary care doctor took one look at my toes and started scribbling notes, then she said something I will never forget. 

 

She said, ‘It’s good you came to see me about this. I’m going to run some tests.’  Whoa – a doctor has never praised me for visiting them. Usually, I get the opposite sense of, ‘Oh, you again, what is it this time?’ 

 

My doctor said my purple toes were likely the cause of chilblains, which is the painful inflammation of small blood vessels in your skin occurring from exposure to cold, causing toes and fingers to appear white and sometimes purple. My doctor explained she was going to run some tests, just in case. I quickly dismissed those last three words—until…

 

A couple of days later, my doctor called me and said that I tested positive for lupus. What? (Pause for the freak-out, “ahhhh””, life flashing before my eyes, loss of speech, drama, etc. I have theater in my blood, what can I say?) 

 

 

At the time, the only thing I knew about lupus was from watching the movie ‘Gross Anatomy’, where the doctor with lupus died from the disease.

 

Still on the phone with my primary doctor, I went into zombie mode as she explained my blood test came back with a positive ANA (anti-nuclear antibody) and she was referring me to a rheumatologist.

 

I think I answered, “K”, and then hung up. It’s all a tad fuzzy.

 

To spare you from my boring Internet search results, I quickly learned that a positive ANA test did not necessarily conclude someone had lupus. (Insert sarcastic overtones for the following sentence.) Of course not! That would be too easy!

 

A lot of my personal, pre-lupus diagnosis frustration was due to the fact that my symptoms were all so vague and they would appear (and disappear) at random times.

 

 

Add to that, doctors usually never listened long enough (or cared enough) to determine the root cause. 

 

Then there’s all the lab test results, MRI’s, CAT scans, ultrasounds, biopsies (insert any other fun medical test___________) that were normally unhelpful, because 99.9999% of the time, the results were inconclusive. 

 

Doctors were always too eager and quick to give me a diagnosis, for example, depression (which honestly happened to me), even if it wasn’t accurate. Or, I would get a referral to another doctor who specialized in XYZ, and more often than not, I would have to wait months to get in to see them for the first time. 

 

One time, the first availability in a specialty doctor’s calendar was six months away. Six months! I was left alone (well I had my non-medical family and friends) as a frustrated, hot mess. Not to mention that I was still suffering physically, and I was scared. 

 

I wanted answers, true answers, and until I was satisfied, I refused to give up. 

 

Well then, what is the most advantageous advice or recommendation I can impart to you now? 

 

If you’re experiencing symptoms similar to mine, book an appointment with a rheumatologist to start. (Just do it, you should start there.)  Be forewarned that you may possibly endure more waiting, need to see other specialty doctors, or undergo further medical tests. 

 

If nothing else, please permit me to impart a teensy, tiny smidgen of wisdom, advice, or hope: Don’t give up. That’s it, but it’s super important and powerful. Don’t give up! (It’s worth repeating, it’s that important.) 

 

 

Don’t give up on your intuition, your inner voice (hopefully yours is not as nagging or dramatic as mine), and don’t give up on you. I cannot express that enough. You know your body. Trust your instincts to get the answers you deserve. 

 

I would highly recommend that you start keeping a journal of your symptoms—all of them. While one symptom might seem inconsequential to you, that one symptom could be a substantial clue to a doctor in unlocking the mystery of your diagnosis.

 

BUT, remember to have patience along your answer-finding journey, because it could take a while before you get a proper diagnosis. I recommend you add some meditation apps to your smart phone. (Does anybody have dumb non-smart phones anymore? No judgment.) 

 

Unfortunately, I regretfully report that it didn’t take long for my mascara hypothesis to fail. Droplets of various shades of black, gray, and clear liquid are splattering onto my keyboard. Who doesn’t need a cry once in a while? 

 

 

 

It has been 12 years since I was “officially” diagnosed with lupus. While my dance dream deviated, permanently (which, hopefully, explains my tears), I’m now tired of dwelling on dreams and aspirations that cannot be fulfilled because of lupus. 

 

I certainly don’t need to add tiredness to the chronic fatigue and exhaustion that my lupus causes, so, I have made new dreams.

 

For example, writing this article and sharing my lupus journey with you. If this helps one person, it’s all worth it. Please, please do what you need/feel is important to follow your pre-lupus suspicion or instinct, because you’re worth it.

 

You are worth it!


 

Blurry photo of feet courtesy of Flickr/Nadine Maurer

Crying eye photo courtesy of Flickr/Alena Navarro-Whyte


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