Lupus is NOT a death sentence. With earlier detection and medical improvements, the survival rate has increased dramatically in the last 50 years. However, many people do die either directly from lupus activity or from related complications. Madame Lulu moves like cat woman. She comes stealthily when you least expect it, and you only know she’s been there because something is missing. What is missing? The absence of pain. Her painful flares bring late nights of excruciating aches and tender joints…of multiple advils and longing for prednisone shudder. She strikes when she wants and has no fear of consequence or hate. She is not intimidated and cannot be wooed. She’s like a woman scorned – nothing can change her mind, but her mind…and a cocktail of medication – prescribed or illicit.
A few years ago one of my sisters lost her sister to this dreadful illness. I am not walking this year because I am not in country, but please support the walk for lupus now! Donate your time and/or your money! For a walk near you, please visit: http://www.lupus.org/newsite/pages/Walk-to-End-Lupus-Now.html
If you are in NYC, the walk is this Saturday, May 18th, 9am at the South Street Seaport
If you are in NJ, the walk is this Sunday, May 19th, 9am at the 6th Street Field, Ocean City
In honor of Valentine’s Day (Don’t judge me…I meant to post this earlier), this post discusses Madame Lulu’s role in my romantic relationships. An article in LUPUS now: sought to give women and men advice on loving with lupus. The hopeful article voices the potential difficulties of bringing lupus into relationships, and gives suggestions for bringing up one’s illness, including the appropriate time and manner in which one should talk about it. It raises thoughts that many people with various forms of lupus may have:
"Learning that you have lupus is always hard, but when you’re single, you face an additional set of fears. You may struggle with when and how to discuss lupus with a potential partner — and worry about how they’ll react once you do. You may even wonder if you could keep up a healthy romance at all, especially when you’re feeling fatigued or self-conscious. Is it possible to look for love — and actually find it — while dealing with all this?”
I had not considered these points. As I read the article, I was thinking, “Hmm, are my chances for love really lower because of Madame Lulu? Am I not getting married? Sigh.” For the most part, when I have had any romantic interest in a young man, we were already friends, so he knew about Madame Lulu and our complicated love story. Even when I have the butterfly rash on my face, and highly observant people say things like, “I think you’re having an allergic reaction to a product you’re using” or “Your skin is breaking out,” I do not worry that it will deter anyone’s romantic interest in me. I used to feel self-conscious, but now I recognize that it is (sometimes) a part of me, and does not make me any less beautiful. I have also discovered the magic of foundation and concealer, and praise god for the melanin in my skin ;-).
Upon further consideration, I realized that I have thought about Madame Lulu and our potential ménage trois much more than I care to acknowledge. My fear is not how a potential partner might react after hearing about her. It is more centered on how he might react when she and I are having a disagreement. I find that most people can tolerate Madame Lulu, but not everything that comes along with her, including the random bouts of fatigue, depression, my desire to stay in on Friday nights, etc. Instead of explaining, I sometimes just settle for being grandma. I’m ok with that. During my first hospitalization, I realized how difficult it is for my friends to see the full impact of Madame Lulu. Some of them only came to see me once and others made jokes to get through the visits. While I have never asked a partner if he can handle two strong and stubborn women in a relationship, it is something that I have thought about in at least two of my relationships. One of them ended because he could not handle the side effects of Madame Lulu. C’est la vie.
Living with Madame Lulu is difficult, but doable. With certain lifestyle adjustments, I have been able to live a relatively healthy and happy life with her. The two of us together are a lot to handle, but I am confident that a daring young man will be able to fully love the both of us some day. So among these timeless questions: “Do you have a wife, girlfriend or are otherwise claimed in another city? What’s your five-year plan? What’s your credit score?”, I need to ask, “Can you stand the rain?” If the answer to this last question is no, as it pertains to Madame Lulu, then I must say goodbye because, “real love will stand the tests of lupus, and times of adversity will strengthen a worthwhile relationship.”
The Americans with Disabilities Act (ADA) defines an individual with a disability as a person who: (1) has a physical or mental impairment that substantially limits one or more major life activities; OR (2) has a record of such an impairment; OR (3) is regarded as having such an impairment. I defined disability as: (1) an admission of my inability to function as well as other people; (2) permission for other people to treat me with pity and look at me with despair; AND (3) an excuse for me to not do something, because my illness would not allow it.
In the first year of my relationship with Madame Lulu, I was not ready to make that admission, give that permission or use that excuse. After our second year anniversary, things changed. That November, I took a blood and urine test (No thanks to Lipshitz!). I was used to having them every three months, so when he did not order them, I had them done anyway. A few Wednesdays later I had a kidney biopsy. Thursday afternoon, Dr. Farrias (the handsome young doctor I almost followed to Miami…) called me saying, “OMG! You need to come in right away. You have jklakdj@$!#kj#%%# (or something like that). He said I had stage IV/V lupus nephritis. Simply put, Madame Lulu took a liking to my kidneys, inflaming them with her lovely kisses. That weekend, my immediate family came to stay with me, I received one million and two (approximately) phone calls from family and church members, and ate HORRIBLE hospital food because I was incorrectly placed on a “renal failure” (low – read “no” – salt, low fat) diet. Thanks to my amazing friends, I had all of the gummy bears I could eat to help me handle the copious amounts of steroids being pumped through my body and the chemotherapy. At the height of my SLE, I had never felt so physically and mentally drained. When waking up and eating became daunting tasks, I realized that the semester would not end well. So…three weeks and three incompletes later, I registered as an individual with a disability through the Office of Disability Services.
Today, I define disability as any biological, psychological or social impairment that limits or inhibits an individual’s ability to perform major life activities in the same, or similar, manner as “typical” (this is the term used to distinguish students with disabilities from students without disabilities) individuals. Sometimes having a disability means one must find a creative way to complete an action; other times it means finding a similar, or different but suitable, substitute. I can continue to participate in many of the past activities of my life prior to Madame Lulu, though perhaps not always with the same vigor, or to the same extent. Madame Lulu, like any significant other, has required me to make changes in order to maintain a healthy and happy relationship. I cannot live the same lifestyle as many others, but this is not necessarily a bad thing. She requires me to rest when I am tired, to maintain a proper diet, to avoid all-nighters, to ask for help when I need it, and to maintain honest communication with my mind, body and support system. Madame Lulu has taught me greater appreciation for my physical, psychological and spiritual well being.
Thanks for tuning in! After my last post, you may or may not be wondering why in the world Lipschitz was still my doctor after he misdiagnosed me with rheumatoid arthritis (after two tests said I didn’t have it). He was not the greatest rheumatologist. Each time I walked into his office for an appointment, he said, “What do you have again?” I would politely roll my eyes and say, SLE. His response, “Oh right.” I always wondered how many patients he had.
As an 18-yr-old in a New York City - away from home for the first time (for longer than two weeks), faced with the challenges of college classes, navigating the Columbia social scene, eating a healthy diet, and dealing with an unfamiliar diagnosis - I was lost. In case you have not had the pleasure of experiencing it for yourself, our healthcare system is very difficult (sometimes more annoying than difficult) to navigate. ESPECIALLY if something is actually wrong with you. I have spent so much time calling doctors’ offices, getting labs and forms faxed and mailed back and forth, getting written referrals so I could be seen, making appointments with busy specialists three months in advance, getting doctor’s notes for professors because I made my appointment before I had my class schedule, making sure insurance paid for procedures - you get the idea. Thank God for Pam (she is the truth) and Aetna. She made sure my grants covered comprehensive care from Aetna (life saver! literally). I graduated with very few medical bills!
Anyhow, Lipschitz’s office is across the street from campus, and he was the first doctor recommended by health services, so I went to Lipschitz. He and his secretary were very nice and always inquired about my grades and relationships. He was just too busy to provide sufficient care. However, since my health was stable up until junior year, and I did not want to leave campus to see another doctor, I stayed with Lipschitz until that time. Yes, I realize I was being incredibly lazy and could have potentially endangered my health. I am pleased to report that today I have an excellent nephrologist who regulates my SLE and LN!
In early 2006 I was a healthy, relatively happy (after I received my college acceptance letters) teenage girl. In May, I noticed my fingers and wrists were swelling, I was always tired, and my shoulders hurt like hell. The nurse at my high school thought I had carpal tunnel. Oh goodness she was so wrong. That summer my knees started to swell and my feet swelled so much that I could not wear shoes. That summer my arch flattened -_- (*sigh*). I would wake up an hour earlier than needed to take 2 pills, wait for the pain to ease, and then actually start my day. I was taking 8 aleve everyday for a few weeks…needless to say, I overdosed on aleve. Today, my doctors and I say I had an allergic reaction. In August ‘06, I was misdiagnosed with Rheumatoid Arthritis (Thanks Lipschitz!). I had already had 2 lab reports say my rheumatoid factor was negative (-_-). After consulting with a 2nd doctor and Lipschitz (I know…), I was diagnosed with Systemic Lupus Erythematosus (SLE) in September ‘06. In November ‘08, after receiving blood work that I, not Lipschitz, randomly requested (I’ll address his continued presence in another post), Lipschitz ordered a kidney biopsy. It revealed I had stage 4 Lupus Nephritis (LN). Today I am happy to report that my LN has been in remission for 2 years!