Life with Madame LuLu

Once upon a time (too many) I decided to stop taking one of my medications. I began to take prednisone intermittently for a month, because I was just forgetting to take my meds, and then stopped completely. Around the time I started taking it intermittently, I noticed a rash on my face, kinda like acne. I had clustered bumps on my forehead, chin and cheeks, and small bumps on my nose that began to peel. After about a month I suspected it might be lupus related. However, I wasn’t going to go back on prednisone (of course not!). Instead I changed my face wash and lotion, made oatmeal masks with the stale oats sitting in my cupboard and took out my weave so there was no hair adding to the irritation of my face. After a while it seemed the rash was going away. Fast forward one month to my nephrology appointment, the one in which my doctor cursed me out (again) for being noncompliant…I’m back on prednisone. After two days, my face looked brand new.

Moral of the story: don’t stop taking corticosteroids at your leisure. When you stop taking them abruptly, the body goes into a state of withdrawal and starts acting ridiculous.

Something I wrote in March of 2010

Anxiety is spiking, through the roof. The hell is going on with me? Run, run Rudolph, leave me alone. Like a big red nose, lupus invades my life. Not only am I reminded every day that I have this chronic illness, poppin pills, 8 to be exact, twice a day, every day. 8 pills every day, and that ladies and gentlemen, is why I take gummy vitamins. But…to continue my statement…not only do these red, white and peach pills remind me every day that I have this lupus, BUT, I can’t even get a tattoo! Pierce my ears! Run! Not get enough sleep! Live! Ugh! But, try as I may to escape my reality, it’s here, it’s mine. I’ve grown, I’m blessed, blessing in disguise. Brilliant, resilient, strong, Fortitude is my first name. My real name, only reaffirmed by God above, in this blessing he has dressed as lupus. Annoyed, angry, frustrated, physical pain, organic pains I can’t even feel – destroying my organs, inflaming my joints, mental pain, anxiety plagues me, depression raids me, but still I rise? Still. I. Rise.

And so…as soon as I am off of this prednisone, that deadly steroid - fat, depression, fear, anxiety, slow healing time, high risk of infection of any kind – all in one tiny white pill – amazing – I WILL get my tattoo. A butterfly – the national symbol of hope for people with lupus; a monarch butterfly specifically – because it’s the smallest insect to travel safely across the Atlantic Ocean, it’s a migratory insect, free to roam the world, always on the go, like myself – it represents strength, resilience, FREEDOM!

I embrace – lupus is a part of me – one part, just a part, not me, just a part of me. It influences my actions, it informs my behaviors, it teaches me responsibility, it teaches me appreciation. Appreciation – for life, for love, for people.  And so I will, Laugh, Love and Live, and Lift others as I climb through this trajectory of my life. Anger, frustration, annoyance, acceptance, EMBRACE. I will EMBRACE. 

It took me three and a half years, but as you can see, I did get my monarch butterfly tattoo :-) 


Lupus is an autoimmune disorder. This means that the immune system has gone crazy and started attacking itself. It recognizes normal cells and tissues as enemies and creates auto-antibodies to fight them off. The creation of these auto-antibodies causes inflammation, which causes pain: lots and lots of pain. Lupus is unpredictable and can impact ANY part of the body. Medical treatment for lupus involves the use of immunosuppressive drugs, which decrease the functioning of the immune system. While these drugs are awesome because they prevent or decrease inflammation and pain, they also leave the body more susceptible to other illnesses. In conclusion, take the money you would have spent on lunch this week and donate to end lupus now.

Someone you know has lupus! I do! When I was first diagnosed with lupus in 2006, the only reference point of many of my friends was the woman on Top Model who kept losing her hair. I didn’t know who this woman was, and still don’t, but I knew I didn’t want to lose my hair! I did lose some, but no big deal. Today, most people I ask know what lupus is, or have at least heard of it. Progress! Lupus is very difficult to diagnose for several reasons. It shares symptoms of so many other illnesses, and the symptoms vary in presentation and severity from person to person. It’s probably not the first illness your doctor might think of when you list symptoms. Many live for years undiagnosed. My diagnosis only took four months; thank god. A diagnosis also cannot be determined from a single test. You must have several positive blood and urine tests, as well as many of the bodily symptoms, in order for your doctor to determine whether or not you have the illness. Some people even test positive for some of the tests, but do not actually have lupus. O_o My hope is that increased awareness will bring forth quicker diagnoses and research leading to safer medications and a cure. 

When it rains…

…it pours…and my joints feel like addicts going through withdrawal!

“It’s so hard to forget pain, but it’s even harder to remember sweetness. We have no scar to show for happiness. We learn so little from peace.”
— Chuck Palahniuk  (via artificialdnafromspace)

(Source: lucifelle, via sillagewrites)

Madame Lulu wants to act a fool, but that’s ok. She and I are still leaving for South Africa on Sunday. November 2012 I celebrated three years of lupus nephritis being in remission, and this January I shall begin the countdown to my next state of remission. I’ll be restarting prednisone. *shudder* *cry* *sigh* *shrug…eventually* back to my chipmunk cheeks. At least in Africa my weight will be considered cute…unless SA culture is so totally different. In that case, I’ll be making use of the university gym frequently! 

It’s official! Madame Lulu and I are headed to South Africa on January 13th at 2:00pm. The irony: I’m flying with Delta Airlines on Founders’ Day! Haha. We’ll be back in October :-) 

It’s official! Madame Lulu and I are headed to South Africa on January 13th at 2:00pm. The irony: I’m flying with Delta Airlines on Founders’ Day! Haha. We’ll be back in October :-)