Life with Madame LuLu

Walk for lupus now!

Thu, 16 May 2013 15:30:07 -0400

Walk for lupus now! : Lupus is NOT a death sentence. With earlier detection and medical...

Something I wrote in March of 2010 Anxiety is spiking,...

Fri, 10 May 2013 08:58:07 -0400

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 :-)

Cheers!

Lupus is an autoimmune disorder. This means that the immune...

Sun, 05 May 2013 15:12:17 -0400

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. http://lupus.donorpages.com/newyork2013/TeamTeeDawn/

Someone you know has lupus! I do! When I was first diagnosed...

Thu, 02 May 2013 15:32:25 -0400

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...

Tue, 26 Mar 2013 14:48:06 -0400

…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..."

Wed, 23 Jan 2013 09:17:38 -0500

“It’s so hard to forget pain, but it’s even harder to remember sweetness. We have no scar to...

be who you are and will be: 100 Years: What Delta Means To Me

Mon, 14 Jan 2013 15:05:23 -0500

be who you are and will be: 100 Years: What Delta Means To Me: for-each-of-you: What of women who...

Madame Lulu wants to act a fool, but that’s ok. She and I...

Wed, 09 Jan 2013 12:40:27 -0500

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...

Wed, 05 Dec 2012 22:15:05 -0500

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 :-)

Today I waited in line for an hour and fifteen minutes so I...

Tue, 06 Nov 2012 14:49:32 -0500

Today I waited in line for an hour and fifteen minutes so I could cast my vote for the next president of the United States. It was 43 degrees, but I was warmed by the thought that because I am on my mother’s insurance plan, if I get sick, I am covered! Today, I voted because Madame Lulu comes with a lot of expenses. I just received a bill for ONLY $261 because my mom’s insurance kicked in and picked up the rest of the bill. On average, I see a nephrologist 4 times a year to keep Madame Lulu in check. Before insurance, his bill is about $300. Each visit, I complete lab work that ranges from $1000-$1600, depending on what I get done that day. I only pay a small fraction of these costs because I am insured. Hallelujah! Today, I voted because my president made sure that I am still covered, and my illness has not become a huge financial burden. Why are you voting?

Four-year-olds have a A LOT of energy. My goddaughter had me...

Fri, 19 Oct 2012 15:58:38 -0400

Four-year-olds have a A LOT of energy. My goddaughter had me running around like I’d had 4 cups of coffee. Haha. I had to take many breaks because I did not have the energy. I can’t imagine being a four-year-old with lupus: to have that mental energy without the physical capacity to match it. As an adult (hahaha), I have reasons to say I’m tired. I work, I volunteer, I expend mental energy interacting with people and listening to blah blah. So when Madame Lulu and I are having an argument, it’s easier to deal with being tired, because I have sooo many other reasons for which I should be tired. However, when children deal with illnesses like lulu, being tired doesn’t make much sense to them. They want to run around and play with their friends. They don’t understand the illness; they just know that something is stopping them from keeping up with other kids.

When Madame Lulu and I are rekindling our relationship, I have...

Wed, 12 Sep 2012 14:56:51 -0400

When Madame Lulu and I are rekindling our relationship, I have very little empathy for small complaints. It’s not that I don’t care; I just have other things on my mind. Please accept my apologies

This week I had one of those days in which I tried to explain...

Wed, 12 Sep 2012 11:17:22 -0400

This week I had one of those days in which I tried to explain why a young, vibrant woman (me) was sooo tired after a night of good sleep. The catch was, I couldn’t, or rather wouldn’t say: “I have lupus.” It was like playing taboo. I said things like, “I’m getting used to the new schedule” and “Maybe I had too much sleep.” Really, I’m just super tired because Madame Lulu and I are getting reacquainted. Hey girl heyyyyy!

#thatawkwardmomentwhen your friend learns about Madame Lulu...

Thu, 28 Jun 2012 22:37:52 -0400

#thatawkwardmomentwhen your friend learns about Madame Lulu through social media

“Hello, my name is Erica. I have lupus.”

So clearly, the first conversation wouldn’t happen that way…unless perhaps I was in a hospital. So when do I/should I tell people about Madame Lulu? Traditionally, I reveal our relationship when I am, or am about to be, sick…and a friend is present to witness the wrath of Madame Lulu.

When I was an undergraduate student, I hid my relationship with Madame Lulu, even when I was in the hospital. It was my job to appear healthy and “normal” at all times. However, one of my friends changed that. He learned about Madame Lulu during our second conversation in bird library. You might say he changed my life, as dramatic as that seems. Because of him, I spoke to a group of people about lupus for the first time, and I participated in my first lupus walk! Spring 2011 was certainly an exciting and emotional time for me. I felt so FREE!

Now, the problem is no longer saying, “I have lupus.” The problem is finding the right time. Once, I talked about lupus over drinks at a party with someone I had known for a year. Some of my friends found out during my talk at a lupus awareness event. During these times, the intoxication and tears that followed probably mellowed any negative reactions or feelings they may have had. Other times, I said it very nonchalantly, and awkward questions or silence followed.

I say all of that to say this: I’m still figuring it all out and I apologize to everyone who finds out I have lupus through my blog, Facebook or twitter. I don’t love you any less…well, I guess that depends on who you are haha. But seriously, I do love YOU and I don’t want to be on your list haha so please accept my apology.

Kisses and hugs,
Erica Bianca Doe

Hello! I was caught up in graduation and moving out and...

Thu, 31 May 2012 00:15:16 -0400

Hello! I was caught up in graduation and moving out and haven’t been able to post in a while. The lupus walk was May 19th and it was absolutely fabulous. The sun was blazing, people were laughing and love was present all around. It was certainly an emotional day, and I’m so happy to have been surrounded by friends and people I consider family :-) More pictures to come!

We’re graduating!!!!! Praise God!

Fri, 11 May 2012 13:54:23 -0400

We’re graduating!!!!! Praise God!

Today is World Lupus Day! Lupus has a medical, emotional and...

Thu, 10 May 2012 11:10:17 -0400

Today is World Lupus Day!

Lupus has a medical, emotional and economic impact on the lives of individuals living with it, as well as their families and friends. Educate yourself and help raise awareness about Madame Lulu. Donate today to help lessen the impact of this complicated illness!

http://donate.lupus.org/site/TR?px=2068161&pg=personal&fr_id=1464&et=ZvEKcrqu4bkOJSg1HBR9Lw&s_tafId=13478

“African Americans, Hispanics/Latinas, Asians and Pacific...

Wed, 09 May 2012 13:15:59 -0400

“African Americans, Hispanics/Latinas, Asians and Pacific Islanders, and Native Americans are diagnosed with lupus two or three times more frequently than Caucasians; however, lupus affects people of all races and ethnicities.”

Donate today! http://donate.lupus.org/site/TR?px=2068161&pg=personal&fr_id=1464&et=ZvEKcrqu4bkOJSg1HBR9Lw&s_tafId=13478

Lupus is expensive! “Lupus can be an expensive disease. The...

Tue, 08 May 2012 18:10:23 -0400

Lupus is expensive! “Lupus can be an expensive disease. The average annual cost to provide healthcare for a person with lupus is $12,643, and rises to nearly $21,000 when lost work productivity is included.”

Donate now to reduce complications and costs! We’re at 84% already! http://donate.lupus.org/site/TR?px=2068161&pg=personal&fr_id=1464&et=ZvEKcrqu4bkOJSg1HBR9Lw&s_tafId=13478

“Many symptoms of lupus mimic those of other illnesses,...

Sun, 06 May 2012 19:57:16 -0400

“Many symptoms of lupus mimic those of other illnesses, and symptoms can come and go over time, which makes diagnosis more difficult. Consequently, lupus can take three to five years or more to diagnose.” Donate now! http://donate.lupus.org/site/TR?px=2068161&pg=personal&fr_id=1464&et=ZvEKcrqu4bkOJSg1HBR9Lw&s_tafId=13478