Strong Women Surviving LUPUS
Nanette Rhodesia Swain Let me be the first to share my story: No, we’ve never met, but like or perhaps unlike so many of you out there, my journey with LUPUS began unexpectedly with many questions; and little or no answers. It was February14, 1991,while sitting with a friend in their apartment in Far Rockaway, N.Y., when my journey began. I remember it was a freezing, snowy Valentine’s night, when I asked them to open the windows because I was suddenly burning up and dripping with beads of sweat. I got up and drove myself back to the city, only to end up in Harlem Hospital Emergency Department with a fever close to 104 degrees. That is how my years of living with LUPUS began. From that day forward, for a period of about six (6) months, it was a series of unanswered questions, endless trips to the doctor (who had no clue as to what was wrong with me at that time), test after test with no definitive answers, endless joint pain; and days and weeks of unexplained fatigue and fevers. For six months the best answer I got was “you’ve got the flu", Really!!!
Finally a colleague of a doctor I was working for at that time, recommended that I see an Immunologist and a Rheumatologist. A who???? Let me break it down: Immunologist, as defined by Webster, is a doctor who studies the way the body immune system functions. A Rheumatologist: is a doctor of medicine that deals with the study and treatment of rheumatic diseases. Before then I had no idea that those kinds of doctors existed or that there were specialist for what I was dealing with. Much to my surprise, about ten (10) months into my journey, I finally had a name for my condition. It is called LUPUS. Once I had a name for my “battle”, it was now time to “go to war.” I was told about the steroid treatments and other medications that were used at that time to treat the disease. I tried it for a few months and found that their treatments for me were almost as bad as the condition itself. So I opted to forego their form of treatment (not something I recommend for any or everyone else). You see my lifestyle, which I voluntarily changed myself at the age of eight(8), not knowing what laid a head for me, afforded me a better chance of not just fighting my battle, but a good chance of winning my war. At age eight (8), while the rest of my family was still eating red meat, pork, fried foods, fast processed greasy foods; I gave it all up. At age eight, I started eating just fresh fruits, fresh or steamed vegetables, baked or broiled fish, drinking skim milk and gallons of water. I was driving my poor mother crazy, because she had to cook my meals separate from the rest of the family. So once the battle began in 1991 (at age 39), the choice to go without a whole lot of western medications was easy; again something I would not recommend to or for everyone with Lupus. I remember asking my doctor at that time what were my chances with the medications; he said “50/50”. So I asked him what were my chances without medication, and he said “the same 50/50.” So then I was left with searching for alternative ways to cope. Now here I am some twenty three (23) years later, and my journey has not gotten any easier or better.
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In fact in the years that have since passed, my journey has proven to be a greater challenge as I grow older. But I am blessed by God's grace and mercy and still moving forward in this journey called life. Here I am in 2014, hoping to help educate and empower others. More to the point to drive home the need to find a viable cure; as well as open what I pray will be a “one-stop” treatment facility somewhere in the United States, for those of us who I now affectionately call “the purple people”. My name is Nanette Rhodesia Swain, and I am the writer and founder of “Hot Butterfly” Facebook page. To that end, I say “welcome to the journey.” It is the hope and prayer of myself and my business partner, that this endeavor and my future newsletter will spread throughout not just New York but to points beyond. So I invite you to join me. Share your story of how your journey began, your experiences along the way. Share how you have coped and managed to overcome obstacles, met challenges, and have won or are winning in your battle with LUPUS. WELCOME!!!!! HOTEP!!!! #D.I.V.A.A. My world of modeling first began as a “hobby” back in the early 1990’s. I never really took myself serious as a model. You see the industry standard is 5’6” an above. The fact that I am an AfricanAmerican female and only 5’4”, I didn’t fit the prototype. Back then African-American models were not as popular as they are now. So, I was basically modeling for “me”, to show me, me. I was still fairly young, and in good physical shape, so why not model? It wasn’t until the spring of 1996, while I was working my usual 8-4 shift at a hospital in New York, when I met my modeling coach, Louis Annias Manns, that modeling came to life for me on a far less sophisticated level than where I am now.
Annias spotted me walking through the hallway on my way to a meeting and all he said was “Walk for me!” It’s not like I wasn’t already ‘walking”, so I had no idea at that time as to what he was expecting me to do. Once he showed me what he wanted me to do, I simply did it. Afterwards he invited me to come to, what is now known in the industry as, “a models casting call”. This casting call was held in the Bronx in an outside courtyard in the back of a beauty shop. There were about thirty of us standing on line waiting to “walk”, and be seen by the designers of that time. From that point, it was the start of where I am now. No, I haven’t graced the runways of Paris, or Milan. But my years of modeling have afforded me the honor to work with some of New York’s best fashion show producers and finest designers: Fashions on 7th, The Rich Bros. Productions, Sofia Davis: CEO of BTE-TV, whom I have had the privilege to grace the runway for New York’s “Fashion-on-the- Hudson” for the last six (6) years. I am currently registered with Rosalind Wornum, CEO of NECC (New England City Chics) Modeling Agency I have walked for designers like “Sena” of Sena Productions, Richard Q of Richard Q Designs, David Padilla Designs, Xiomara Hernandez : CEO of Xiomara Creations, Yvonne-Jewnell of Yvonne – Jewnell Designs, Sade Perry of Misperri Fashions, Princess of “The Harlem Brownstone”, Linda Cocochynna Ford of CCN Designs; and Donna Michelle Kittrell of DMochelle Fashions . I’ve done photo shoots with photographers like Ronnie Wright, Andrew Wright (who has submitted some of my pictures to Getty Images), Stephen Geyer, Allison V. Brown ( Lead Photographer for Sofia Davis at Fashion Avenue News Magazine), and Lloyd Crawford of I-Fashion Magazine. While my original modeling mentors are Louis Annias Manns, Martha I. Glenn and David Padilla, it is Sofia Davis of BTE-TV, Lloyd Crawford of I-
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fashion Magazine and Donna Michelle Kittrell of DMochelle Fashions, who help to propel my modeling “career” to where it is now. Currently, I am a contestant in Sofia Davis’ Fashion Avenue News Magazine: Super Model Showcase for June of 2015. Lloyd Crawford’s I-Fashion Magazine for January 2015, recently did a feature article on me titled “I Am She”. The article was to help promote my campaign for Lupus Awareness and Education that’s a whole different side to my reason(s) for modeling. Lloyd tells me that soon he will run another issue featuring me wearing some fantastic designs by DMochelle Fashions, so I am excited about that as well. As previously stated, I recently registered with an agency based in the Boston area,
and they are also doing a Super Model showcase, so I have registered to do that as well. Prayer fully it will all come together. I guess you’re wondering “Why at this age?” All I can say is that “it’s my time”. Thirty years ago God made me a promise, and now that promise is coming to pass. I am basking in the richness of His favor and blessings and for every door He opens for me, I will literally “Walk” through it. Black women, my age rarely get such an opportunity. So I am both honored and humbled by the journey God has blessed me to take at this time. Donald Lawrence wrote: “My waiting is over. It’s my season…. to “walk into my season.”
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What is lupus? Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body. Lupus is also a disease of flares (the symptoms worsen and you feel ill) and remissions (the symptoms improve and you feel better). These are some additional facts about lupus that you should know:
Lupus is not contagious, not even through sexual contact. You cannot "catch" lupus from someone or "give" lupus to someone. Lupus is not like or related to cancer. Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease, as described above. Lupus is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is underactive; in lupus, the immune system is overactive. Lupus can range from mild to life-threatening and should always be treated by a doctor. With good medical care, most people with lupus can lead a full life. Our research estimates that at least 1.5 million Americans have lupus. The actual number may be higher; however, there have been no large-scale studies to show the actual number of people in the U.S. living with lupus. More than 16,000 new cases of lupus are reported annually across the country. It is believed that 5 million people throughout the world have a form of lupus. Lupus strikes mostly women of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. Most people will develop lupus between the ages of 15-44. Women of color are two to three times more likely to develop lupus than Caucasians. People of all races and ethnic groups can develop lupus.
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DMochelle Fashions Designs for Breast Cancer Women Models: Alizah Saladin, Lue Switz Wong, Alexis Morreale, Gabriela Panduru Fit, Nitza Elyse, Princess Adex Adex, Rick Brown, Guillermo Baez Photo Credit: Juan Carlos Guevara Phil Harris: Director and Choreographer Makeup by: Melody Jefferson Mua
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