2011 was supposed to be the year I showed up and showed out on life! I was preparing for my 40th birthday bash when I first began to feel ill. During that time I was self-diagnosing; I was working 50+ hours per week as the Executive Director of Majestic Divas, Inc (a social & charitable organization based in Laurel, MD), all while juggling roles as a mentor, philanthropist, wife, mother, and grandmother. I chalked my condition up to exhaustion – I figured I simply needed a vacation, and to sleep and eat better. But in Spring 2011, I began to experience shortness of breath, hot flashes, extreme sweating, headaches, fatigue, anemia, gastrointestinal problems, weight gain, and insomnia.
As the symptoms began to progress, I found I could not get out of bed. My feet and ankles were swollen and always hurting (I wore 5-6 inch stilettos heels every day). And most importantly (at that time, anyway), my physical appearance began to deteriorate at a frightening pace – skin rashes and black marks were forming on my forehead and spreading, dreadful dark circles enveloped around my eyes, and the skin on my nose would peel until there wasn’t any left. I felt awful, and my confidence was nonexistent. I’d visited several dermatologists who’d diagnosed me with things like anemia, hyper pigmentation and adult acne.
I was trying different remedies. Some worked for a while, and some never worked at all. Growing more and more frustrated and embarrassed by my appearance, I decided to seek the help of a specialist. Looking back, it’s almost funny how I was way more concerned with my skin than I was with the fatigue and swollen ankles.
At my first visit at Callender Dermatology, I was seen by the physician assistant. She took pictures of my face, prescribed me a hydrocortisone cream and sent me on my way. I thought to myself, “That was easy! A $25 co-pay and hydrocortisone, I will be picture perfect in a few weeks, just in time for my birthday photo shoot.”
Like I’d begin any normal day, I went to CVS hoping to come out with a tube of some magical cream that would clear up my so-called adult acne. The pharmacist informed me that my prescription required authorization. When he called to get authorization, the doctor instructed him not to fill it, and to have me come to the office. “Even better!” I said to myself. “She is going to give me the good stuff to clear this up.” I made an appointment to see the doctor the next day, never bothering to mention it to my husband or friends. I didn’t think it was anything to be at all concerned about.
But as the appointment began, and much to my surprise, Dr. Callender immediately made the suggestion that I get tested for Lupus. She wasn’t clear as to why none of the physicians I’d previously seen ever had tested me. She also believed that I was currently having a flare-up, which was causing the rash and dark circles. I was certainly taken aback by what she said, but I agreed to be tested. I had honestly never heard of Lupus and didn’t have the slightest idea what it was. Dr. Callender handed me a few pamphlets and began to explain things in further detail. I had no idea at the time that I would be in for the fight of my life.
I was officially diagnosed with Systemic Lupus on July 9, 2011. Lupus is a chronic autoimmune disease that can affect virtually any organ of the body. In Lupus, the body’s immune system, which normally functions to protect against foreign invaders, becomes hyperactive, forming antibodies that attack normal tissues and organs, including the skin, joints, kidneys, brain, heart, lungs, and blood. Lupus is characterized by periods of illness, called flares, and periods of wellness, or remission.
Symptoms vary from person to person, and may come and go. I typically experience:
- Chest pain
- Joint pain
- Fatigue
- Fever
- Nauseous
- Hair loss
- Sensitivity to sunlight
- Skin rash aka the “butterfly” rash. The rash is most often seen over the cheeks and bridge of the nose, but can be widespread. It gets worse in sunlight.
Currently I’m under the care of a neurologist, rheumatologist, endocrinologist, and dermatologist. I have a cocktail of meds that I take daily, in addition to B12 injections & iron infusions. So far, I’ve been lucky enough to not have any “major” procedures. But I’ve been hospitalized six times due to complications of Lupus. I’ve suffered a mild seizure, and complete hair loss from the chemotherapy treatments. I’m in pain every day (similar to the body aches you feel when you have the flu), and I suffer with migraines, insomnia, and short-term memory loss. I do my best to hide my pain because I don’t want to worry my family and, maybe most importantly, I don’t want people to walk around feeling sorry for me.
When I was first diagnosed, I was very angry that I had Lupus. I felt like my body had betrayed me and that God had betrayed me. I questioned why – why me? I live a good life, I give back, I support my community, my friends and my family. WHY ME??
I felt alone and shunned. My friends could not understand how I could feel fine one moment, and five minutes later felt like death warmed over. Some thought I was faking or making excuses and began to question whether they could truly depend on me. They didn’t consider that most of the time, I don’t look the way I feel. I’ve heard a thousand times “you don’t look sick,” “you just need to work out,” “you need to eat this….don’t eat that.” It takes a lot of work, effort, and energy to not look sick.
I remember having a pity party and crying my eyes out. My oldest brother said to me, “God didn’t send you this challenge to defeat you – He gave you this challenge to increase you. You are your mother’s daughter. You may bend, BUT you won’t break!” My mother had bravely battled breast cancer and Alzheimer’s disease (mom passed away September 23, 2013). I reflected, and remembered the strength in her fight and that I come from that – I knew it was in me to not only fight, but win! That day, I decided to live in peace with Lupus, instead of in pieces. I took steps to regain my health and wellness, and I formed The Lupie Chick Project, a charitable organization dedicated to raising awareness of lupus through advocacy, education, and FUNraising events. I started Selfies for Lupus in May 2014, which is a social media awareness campaign to bring awareness via selfies. I also shared my journey, my pain, my fears, and my tears by utilizing social media outlets such as Instagram, Facebook, Snapchat, Facebook Live, and Periscope by putting a face to a little-known disease and have dedicated myself to keeping it “real, raw, & relevant.”
I have learned that my ability is stronger than my disability. I have made many adjustments in my daily routine, in my relationships, in my life, and I’M ABLE! I’m stronger than Lupus and I make one hell of a cheerleader. Cheering for myself, maintaining a positive attitude, documenting my holistic lifestyle, clean-eating diet and fitness journey; continuing to advocate and educate my community, pray, and using my voice and platform to be the face of lupus are some of the courageous steps I take to reach my goal of living well, despite the challenges of lupus.
Altonia Fowler-Dugar aka Naturally Lupie
The Lupie Chick
SOCIAL MEDIA
WEBSITE: www.lupiechick.com
INSTAGRAM: Naturally_Lupie
TWITTER: @NaturallyLupie
SNAPCHAT: @NaturallyLupie
FACEBOOK: https://www.facebook.com/TheLupieChickProject