My Story

Hi! I’m MarlaJan and I don’t put milk in my cereal. Yes, you read that correctly. I’m guessing, however, you’re less interested in my strange eating habits, and more interested in learning about how I drew the short straw in the family gene pool.

I ain’t mad about it, it’s definitely made things quite interesting to say the least. This blog of mine reflects all of that…not just living life with lupus, but all my overlapping autoimmune diseases, cancer, and a heart defect as well. You could say, I’ve been a medical marvel since birth.

Case in point: Shortly after I entered this world, my mom and dad were told that I had a small Ventricular Septal Defect (VSD), a hole between the right and left ventricle in my heart, but the doctors told them not to worry! The hole was already starting to close, and I’d never need any type of intervention. My mom, though, kept insisting that something wasn’t right, through all the doctors’ reassurances that she was just a nervous new mama and it would be fine to take her healthy baby girl home.

At 6 weeks old, I was diagnosed with (get ready…here comes the jargon) tetralogy of Fallot (TOF) with pulmonary atresia. TOF is a complex congenital heart defect that allows oxygen-poor (blue) blood to be pumped to the body. The options weren’t great: Without surgery, I would die. With surgery, my parents were told to keep their fingers crossed and hope for the best- but not to plan my 2nd birthday party.

I spent my first 6 years of life with oxygen levels in the 70’s. Normal kids have oxygen levels between 97-100%. That’s right folks, I was a real-life Smurfette.

By the age of 6, I’d already had 4 heart surgeries: Blalock-Taussig shunt (a palliative surgery meant to buy me time) followed by 3 open-heart surgeries. That’s just the start, though. I’ve been in heart failure, had so many chest x-rays I should be glowing, been on ECMO (Extracorporeal membrane oxygenation…where blood is pumped through an artificial lung), had several cardiac catheterizations, wasn’t allowed to leave the house without an oxygen tank, been in cardiac arrest more times than I’d like to count, blah, blah, blah.

Despite what my little body endured in 6 short years, I am not cured. I require lifelong cardiac care and monitoring, and the possibility of future heart surgeries looms over my head.

Now, that alone should be my “Get Out of Jail Free” card, right? You’d think what I had been through (and potentially still have to go through), would be enough for any one person to undergo. But, not so much…

After graduating college with a nursing degree, I interviewed at one place, the only place I’ve ever wanted to work- The Children’s Hospital of Philadelphia (CHOP). CHOP is the place that I’ve been a patient since I was 6 weeks old, the place that saved my life when my heart had all but given up.

Life was good; I was back in school for my Master’s degree to become a pediatric nurse practitioner, my career was in full-swing, and I had just married the man of my dreams. We even spent 10 glorious days soaking up the sun in St Lucia on our honeymoon.

On a random morning about three weeks after our honeymoon, I rolled over in bed to give my new husband the ol’ sexy eyes and the response I got was not quite what I expected.

Let me tell you something, nothing says newlywed bliss like your new husband asking what is wrong with your face. Freaked out, I jumped up and ran to the mirror. My face was well…let’s just say I looked like Will Smith in Hitch when he has the allergic reaction to the shellfish.

I spent the next 6ish months, in and out of ER’s, doctor’s offices and radiology offices being offended by scopes and scans. I was poked, prodded and drained of blood. You name it, I was initially diagnosed with everything. I was told it was likely I had MS, a bad sinus infection, MRSA, impetigo, and on more than one occasion, I was even told there was nothing physically wrong with me, it was all in my head and I needed to see a psychiatrist.

When it seemed like no one would ever take me seriously, a resident in a local ER asked if I had seen a rheumatologist and if autoimmune disease runs in my family. Every other disease runs in my family, so why not autoimmune? Two months and a boatload more of testing later, I finally had a diagnosis.

Systemic lupus erythematosus- a chronic autoimmune disease that can damage any part of my body.

I was equally relieved and petrified; on one hand, someone FINALLY took me seriously! I had a name for what was wrong with me, and I could learn to live with it. On the other hand, I realized I was just diagnosed with a deadly, incurable disease that is most well-known for being the butt of a joke on a medical drama.

Lupus is not a joke. There is no sugar-coating this disease, and how it’s affected me. Since my official diagnosis in 2008, I’ve received diagnoses of several overlapping autoimmune diseases, been treated for cancer, had heart surgery to get a pacemaker, and had a double mastectomy. Lupus played a role in all of that.

It has changed every single aspect of my life exponentially. It’s affected my entire body. At times, I’ve lost my hair, my self-esteem, and my dignity. I’ve walked with a cane. I gained 65lbs in 6 weeks due to high-dose corticosteroids. I’m infertile. I guess “exponentially” doesn’t really begin to cut it.

My marriage was also in the path of lupus’s destruction. Unfortunately, our vows of “in sickness and in health” weren’t strong enough to withstand the wrath of this disease. Lupus, and the changes that came with it, put such a wrench between the two of us that we divorced.

No one ever dreams of a life with a chronic illness, especially one that’s considered “invisible.” Lupus wasn’t my decision—I didn’t wake up one morning and think, Hey, lupus would be a fun way to spend the rest of my life. How can I get out of having babies, a career I’ve always dreamed of, and tropical vacations? Can I spend all of my money on insurance, copays, and deductibles?

You get my point. Life with lupus is not a cakewalk—some days are downright dreadful. But over the years I’ve learned it’s not all despair. Lupus has taught me to fight harder and to speak my truth. To be a voice for those who can’t. To advocate for more research and improved treatments.

My blog was started as a way to vent, but quickly turned into a passion. This small space of mine on the interwebs is here to show you all yeah, really bad shit happens that’s completely out of our control, but it doesn’t have to define you. I am NOT lupus.

Love you all,

MarlaJan