“Everyone wants endurance, but few want to endure“ Ernest Hemingway
My name is Kim Nault, I am 40 years old and have SLE and MCTD. I am a Massachusetts transplant residing in northern California and a mother to a thriving nine year old daughter. I spent several years undiagnosed and untreated. A “chance” conversation with another Lupus patient in the summer of 2005 helped lead me to the diagnosis from a rheumatologist in October of 2005. Like many, I was relieved when the diagnosis came, as it was a confirmation for years of bizarre and baffling health problems. Upon my diagnosis, I remember telling my frightened mother, “Do not worry, that something good will come from all of this.”
After two years of feeling isolated with my buffet of health problems, medications and specialists I began to search the Internet and found a web site serving Lupus and MCTD patients, and I felt immediately at home in this community. Within a short period of time I was befriended by the founder of that site and began doing a lot of volunteer work at that site.
I soon discovered that my experience of frustrating years living a life undiagnosed could help others. As a direct result of my experiences I dedicated myself to spreading Lupus awareness and supporting other patients. I volunteer at LupusMCTD.com , where I serve as the administrative assistant to founder/owner Kathy A. Walters. I am the editor of “Howling Knights“ newsletter, and now a radio blog host at Blogtalkradio .
Each of these endeavors expand the mission statement of Lupus MCTD Foundation of America, of spreading awareness, support and information to other patients and their loved ones. Kathy is one of my heroes with a vast vision of Lupus altruism, and I feel blessed to have by “chance” found her. Her presence in my life is a blessing and her site’s vision allows me to help others.
The greatest personal challenge that I have had with living with Lupus still remains to be the one of acceptance.
I’m still learning that the journey of acceptance is a process and not an event ~ and subject to change on any given day! I am not super woman; I cannot clean the entire house in one day anymore; that I cannot over tax myself on good days; I have to have rest periods throughout the day; I am not measured by my ability to accomplish “to-do” lists; I have to make accommodations for myself; cannot over schedule. I can be my worse critic and I have become more willing to request help doing something. One Lupus patient told me a while back that it is okay to say “no.” What a liberating word! Simple, but sometimes not easy.
Holidays hosted at my house include enlisting other’s for side dishes and deserts as well as the clean-up crew. I make large meals where leftovers can be recycled into freezer bags for those low energy days. I use one pharmacy for all my medications. All of my doctors have on record my pharmacy and other doctors. I always have an updated paper in my pocketbook of my medical information, in the event of an emergency. I always make a list of concerns or questions prior to visiting my doctors. I have had to fire doctors who were not advocating for me. I have learned not to freak out on having to take immunosuppressive agents, that their benefits far outweigh the risks.
Don’t over do it on a good day, for you may end up suffering a series of bad days or weeks. Be willing to say, ” No. “ Nurture your relationships with family and friends. Your unique presence in your loved ones lives is instrumental, and your contributions in their lives has an infinite ripple effect. Our bodies can be wounded, but our spirits not broken. Together we are stronger, and having friendships with other patients is a source of love, hope and encouragement for many. These friendships are morsels that nourish our spirits and heal our hearts. Connect with other patients, for they understand what you are going through! Remember you are not alone, you are among the many fighters, learning endurance through acts of enduring.
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Kim is an SLE patient with MCTD and a patient advocate who networks with other other Lupus patient advocates with the commonality of raising public awareness and most importantly, to inspire, educate and empower other patients. She is a published poet and essayist with over two decades of experience in community service work for various non-profit groups. A small business owner since 1992. Kim is also a HELLP Syndrome and Preeclampsia survivor. Follow her and Lupus MCTD Foundation of America on Twitter under @LupusMCTD and many other places listed on their website.
“Paying it forward to other patients” ~ utilizing our experiences to help others!
