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My World Has Gotten Smaller But More Important

By: Donna Oram, MSW, ACSW

When "Lupus Throws You for A Loop” (available on Amazon), was published in early 2017, it allowed my world to open up in so many new and beautiful ways. Yes, I still lived with lupus within my body. Yes, I still had the fatigue, stiffness, hair loss, and muscle aches I had been experiencing for years. But since the book’s publication on February 3, 2017, it was as though I had composed a complete new symphony of blessings and utter, complete joy within my soul. My life in so many ways was now forever altered for the better.

While I was writing the book, I had no idea how it would be received. I did not know if it was good, bad, or indifferent. Once completed but not yet edited, I allowed a close friend to read the manuscript. She sent me a beautiful email when she finished reading it, saying how much she enjoyed it and how proud she was of me. BUT, I still had no idea whether the book was ‘worthy or not’. After all, my friend did not have lupus, and she had always been complimentary to me. The woman who edited the book indicated the book was “very readable” and required little editing. Once again, I told myself, she, the editor was not experienced with lupus. Knowing where to put colons and quotation marks was important, but could not tell me whether it could benefit a person learning to cope with lupus. Once completed, once edited, I gave a copy of the manuscript to my rheumatologist of 27 years, whom I trusted as the finest expert of lupus that I knew. He also eventually wrote the book’s beautiful foreword. His remark when he turned it back to me two weeks later with a big grin on his face, was, “Lupus patients must read this book.” Then and only then, did I begin to smile. After that it was difficult to wipe the smile off my face!

Once the book was published, my world really did change. I began trying to figure out how to market the book to the many lupus groups I had discovered. I was overwhelmed and grateful at the beautiful review and endorsement that the Executive Director of Michigan Lupus Foundation – Ben Rathbun –wrote. I began once again to volunteer for MLF and become serious about advocacy and lupus awareness. I donated proceeds from every book sold to the MLF and still do.

I felt as though I had begun a new career and my retirement was no longer. I felt a new vitality in living. I once again became a contributor to the lupus community, the community that I had always had an extreme passion for. I went out of my comfort zone and participated in book signing events. I accepted requests to publicly speak at support groups, book fairs, and symposiums. I attended lupus fundraising events where I sold my book. I was out there. My husband was always by my side, supporting me and helping me any way he could.

One day I happened to come across a live supportive lupus chat on Facebook out of Portland, Oregon, facilitated by a 37 year old woman who had been a lupus warrior for the same length of time I had been. She was only eleven years old when diagnosed; I had been 45. Her experiences were so extensive. As a preteen and teen, she was hospitalized multiple times including once for five months. For a time, she was unable to walk as her muscles had atrophied. I was totally mesmerized when I watched her. I thought she was amazing, completely transparent, and such an inspiration to her listeners. In spite of the age difference, I felt connected to her on a type of spiritual level. We thought alike; we described things using the same terms and words. I felt such a complete and total connection. Her name was Kelli Roseta. She was on twice a week and I moved my schedule about so I could watch her every show. I sent several of my books to her to give away on her show, if she approved. AND she did. She wrote to me how much she enjoyed the book and ultimately called it one of the four must-haves every person with lupus should have in their personal library. The book is listed in the resource section of her website, I was thrilled. Watching her program, I was able to comment and chat with other regulars. I began to truly care about many of the regulars- how their health was, how they were feeling.

I began to spend more time on Facebook. I became virtual friends with many people in the lupus community. There was Elizabeth on the east coast who was one of the finest parent advocates there could be. Her young daughter had lupus. I became friendly with a woman who was struggling to decide whether to retire and go on disability; a young woman in Ohio who was seeking a job with health benefits; a woman from California who not only was experiencing lupus flares but while her mom was dying; one from New York who was an amazing artist, a teenager who had a beautiful spark and sense of humor. There was a truly awesome woman from San Jose, California, with whom I was so impressed, who in spite of her serious lupus involvement had the most beautiful, engaging smile and positive attitude and advocated so much for so many. Locally, there was a lovely woman who used her personal positivity to help so many in a closed lupus group. She had been so helpful to me when my book first came out. I either was friended or did friend these women who were strong, resilient, and empowered. Besides Kelli, I became very close with a woman who was from a suburb of Chicago. She not only had lupus severely, but had more overlapping illnesses, and health problems of anyone I knew. I not only recognized how beautiful a woman she was, but to me, she embodied the true essence of what a Lupus Warrior is. She minimized her own problems, and spent most of her time supporting others.

In my experiences since February 3, 2017, I have friended and befriended so many others. Met one through my daughter who despite many difficulties with her own lupus, cares 24/7 for her mother who has Alzheimer’s. I have met a lovely young woman who cares for her autistic son in spite of experiencing many flares. I have met beautiful women through a MLF Focus Group who have come to mean so much. I have met women who have traveled to Michigan to attend Michigan Lupus Foundation’s symposiums- several of whom are from the Chicago area. And I have actually hugged Kelli in person as she came to Detroit to be a keynote speaker for the MLF Detroit symposium.

The lupus community is huge. It is filled with a magnitude of people who ‘walk the walk’. We who have lupus are interconnected. We each have a bond. In my last speech given at the Traverse City, Michigan symposium for Michigan Lupus Foundation, I paraphrased a short segment from my book, “I may not recognize you if I pass you on the street. I may not recognize you if we happen to be standing in the same line at the grocery store, but I will know you. Oh, yes, I will know each and every one of you, because each of you has a piece of my heart. You are each part of me and I am of you. We ‘get each other’. That is why none of us is ever alone. Whenever we are feeling down, we have a whole group of individuals from around our entire globe who freely send us positivity and feelings of empowerment.”

I wish to thank every one of you who has made me feel empowered and strong. I thank each one of you who has spoken kindly of me and my book. I thank each one of you who has written a book review. I give special thanks to Donald E. Thomas Jr., MD, FACP, FACR, rheumatologist and author of “The Lupus Encyclopedia”, who wrote a five star Amazon review and has recommended my book to his patients having difficulty coping. I sincerely thank Ben Rathbun, the Executive Director of Michigan Lupus Foundation who has supported me so much and has always made me feel important and productive. And, of course, I give thanks to my Kelli Roseta who will forever be in my heart and soul.

Article by: Donna Oram

Donna Oram, MSW, ACSW has been diagnosed with lupus for over twenty eight years, since her mid-forties while attending school to obtain a master’s degree in social work. In spite of that, she was able to graduate and work full time as a medical social worker at a metro Detroit hospital for nearly 24 years. Two years following her own lupus diagnosis, she began a long career as a volunteer and an advocate for Michigan Lupus Foundation. During this time, she did public speaking throughout the state of Michigan and beyond; she counseled those having difficulty coping with their lupus; planned and organized educational workshops and symposiums; and was a board member for several years. She has loved helping individuals cope positively in the lupus community who shared her illness and has always felt a strong connection and bond with everyone who has lupus. After retirement from her position as a medical social worker and a volunteer, Donna wrote and published her book, “When Lupus Throws You for a Loop”, available on Amazon, which is a handbook for those newly diagnosed, lupus veterans, and for those who love them. Once her book was published, she began once again volunteering and advocating for Michigan Lupus Foundation. She has become active in public speaking once again, and was recently re-elected to the Board of Directors and is currently facilitating a support group. She and the Executive Director of MLF, Ben Rathbun have jointly begun a national campaign for Lupus Awareness, called, “I Talk Out Loud About Lupus”.

Donna Oram lives in metro Detroit with her husband of nearly 55 years. She enjoys living close by to her two daughters, her son-in-law’s, and her four beautiful grandchildren. In spite of living with lupus, her life has been very fulfilling and joyful.

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