WITH LUPUS
ISSUE 9
Living
renewal
Suzanne
Thinking back….. In September of 2022 the LFA,GOC will be celebrating 45 years of existence. I have been around for 34 of those years. During that time, I have seen the growth of this organization and the great accomplishments we have made along the way in the pursuit of finding a cause and cure for lupus. As a young patient in the 70’s, there was almost no literature to share about lupus. I remember there was this little orange book with a black sun on it. I found out later this was the logo for the Lupus Foundation of America. Because the sun is our enemy. I never gave much thought to it, though. Then about 10 or 15 years later there was a new logo. It looked like a fan with the word lupus in the center of it. Later I learned they were rays from the sun and each ray was symbolic of something. I never knew what, but again the sun was the concept. Of course, I do remember that everyone included a butterfly along the way for years. This was because of the infamous butterfly rash that many of us would get across the bridge of our nose. And who doesn’t love a butterfly? This is one of the most used symbols in the world. At some point in the past, everyone of our chapters had used the butterfly in some form or the other, but it has never become an official logo for our organizations. As the years passed lupus continued to be a mysterious and cruel disease. There were so many questions and little answers. Thus the famous P in lupus was rebirthed into the question mark we know today, LU?US. It now serves as our logo in the fight against lupus. I was happy to be a part of the group that came together to agree on the messaging. At first, I thought it was crazy, but then I reflected on what a cruel journey I had and how many questions we had with no answers. It was not the pretty butterfly that I hoped for, but it made a lot of sense. I’m glad we still use it today. Although the butterfly wasn’t made the logo, it still holds great meaning for the Lupus Foundation. Butterflies are beautiful, majestic creatures that evolve from caterpillars into winged insects with a kaleidoscope of color on their wings. Their amazing and inspiring process of metamorphosis comes with a host of theories of their symbolism across the world. There are many articles written about butterflies, each conveying a different meaning, including transformation, rebirth, beauty, creativity and spirituality. The various colors of the butterfly also present additional spiritual meanings. These articles make for a good and big read on a stormy day. I keep being amazed with the similarity to being a Lupian and the radical changes we undergo after the diagnosis of lupus. Each new lupus patient starts as a small caterpillar, trying to survive on the basics. Then as they grow and learn more about their world they begin to come into their own. With change, patience, rest, and confidence they continue on an unimaginable new journey that includes beauty and determination that can be shared with the whole world. After meditating on their new knowledge and finding their footing they are reborn into a butterfly, miraculously transformed into a being of beauty and grace. It symbolizes what a new life can be like with lupus. That is us.
Can you just imagine being that little caterpillar, living with so much uncertainty? Not sure who was going to guide you, care for you and ensure that you will be ok. Then ultimately turning into this beautiful incredible creature for the world to enjoy. This is so us. For some of us the journey will be shorter, our wings although beautiful may not have the strength to fly. For others the journey may be longer, able to navigate the world and find the answers we need. Either way while we embark on our journey, I wonder where everyone’s journey will take them. No matter what we weather, be it through flares and/or remission we can continue to thrive in a way that best meets our situation. We Lupians may be liberated from a flare, depression, or other health challenges while in our butterfly stage. While some of us may embark on journeys of epic proportions, crossing entire continents, dealing with various medications, tests, and doctors. Just like beautiful butterflies each one of us will have a different journey. While in flight you will not be alone, while dormant you will not be alone, together we will all be beautiful, and the world will be a better place because we are in it. What color butterfly do you want to be? For me it is white. The white butterfly is unique because it is connected to purity, peace, richness in life, and spiritual connections. In life I have always connected to these virtues and characteristics. There are so many colors to choose from though and everyone has a color that can describe their traits and virtues. I encourage you to find a color that represents you. It takes work to get to a place of acceptance of the new you. Finding the right team of physicians to meet all of your needs, ensuring that a treatment plan is created, and that you stay compliant with it, finding a support system, staying in the loop with lupus updates and determination. All of these things can impact your journey from caterpillar to butterfly and I encourage you to find the right tools to help you become the beautiful butterfly you are. Just like the caterpillar, he had to take so many steps to get to his transformation. But he did it and so can you.
Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter
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CONTENTS
Pg. 1 - 2 Letter from Suzanne Pg. 4 ExactCare Pg. 5-7 Patient Article: Haley Shasteen
Patient Article by Haley Shasteen
Pg. 8 Walk to End Lupus Now® Pg. 9 New Programs Pg. 10 Butterfly Poems Pg. 11-12 Patient Article: Tanya Smith Pg. 13-14 Ways to Get Involved & Ways to Give Pg. 15-16 Patient Article: Amy Filbert Pg. 17-18 Be Fierce & Take Charge Pg. 19-21 The Top 5 Things Gardening Can Teach You About Self-Care
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Butterfly Poems
Pg. 22 Where Should I Go For Care? Pg. 23 Patient Article: Jordan Maria Pg. 24 Research & News Pg. 25 Blog & Podcast Pg. 26-27 Could It Be Lupus? Pg. 28 Staff Page
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Research News Update
1921
The Top 5 Things Gardening Can Teach You About Self-Care
Lupus Foundation, Greater Ohio Chapter Partnership with ExactCare Thank you to ExactCare Pharmacy! The hydroxychloroquine program will be closing by the end of May. We were able to help 60 patients in the state of Ohio receive their prescription free of cost. The partnership we have built with ExactCare Pharmacy has been a great help to the lupus community. We will continue to look for ways we can best serve lupus patients in the state of Ohio. We want to thank ExactCare Pharmacy with assisting the Chapter to safely deliver the medication to lupus patients in need.
The Lupus Foundation of America, Greater Ohio Chapter, Inc. strives to provide accurate information in a timely and efficient manner. Reference in this publication to any specific product or service is for information and convenience to the public and does not constitute endorsement or recommendation by the Lupus Foundation of America, Greater Ohio Chapter, Inc.
www.exactcarepharmacy.com
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LIVING WITH LUPUS MAGAZINE
PATIENT ARTICLE:
HAYLEY SHASTEEN & DEBRA KUNKLE
A MOM AND DAUGHTER WITH LUPUS My mom, Debra, and I have always shared a lot: our love for animals, spending time outdoors, and watching strange movies. We never expected that we would both share a chronic autoimmune disease. Decades apart, my mom and I had strangely similar childhoods when it came to health. My mom recalls constantly having infections as a child, including severe ear infections that required surgical intervention and constant battles with strep throat. She also found herself feeling extremely fatigued, which her father assumed was her being lazy, and she recalls that she experienced brain fog throughout her schooling, although at the time she lacked the vocabulary to describe that experience. As a child, I also had frequent battles with infection, although I was more prone to pink eye, sinus infections, and urinary tract infec-
tions. My mom told me that she took me to many doctors when I was growing up due to my constant complaints of pain, swelling in my hands and face, and abdominal issues. I was diagnosed with abdominal migraine, a condition which causes severe abdominal pain, but not much else regarding my constant pain and swelling. My mom said that she always feared the worst, thinking that I had cancer. Although my mom’s symptoms
became worse in her young and early adulthood, she didn’t find many answers for her experiences. Finally, when she was attending college in 2008, she saw a doctor who diagnosed her with fibromyalgia as many of her pain and fatigue symptoms aligned with the condition. The doctor started her on a treatment for fibromyalgia and as my mom continued to express concern about her ongoing symptoms, the doctor instead diagnosed her with depression. My mom became extremely frustrated
"My mom and I have always been extremely close, but battling the same illness together has only brought us closer." LIVING WITH LUPUS MAGAZINE
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with the diagnosis and stopped seeking treatment for her symptoms, instead opting to cope with her symptoms on her own. Perhaps my mom’s own diagnostic frustrations are what empowered her to continue to seek better treatment for me as a child when I was displaying similar symptoms she had experienced. As I became a teenager, my symptoms became more pronounced and I continued to complain of pain, extreme fatigue, headaches, and generally feeling unwell. We visited countless doctors, many of whom felt that my symptoms were nothing more than growing pains or caused by stress and anxiety from school. We hit dead end after dead end, which I’m sure was disheartening for my mom who had experienced similar trials in her own life. In 2012, my mom caught the flu and because we lived in the same house, I also caught the flu. Although my mom recovered in a few days and only had a mild illness, I was far from recovery after being violently ill for several days. My mom decided to take me to the local children’s hospital as I struggled to keep any fluids down and was in severe pain. The doctors in the emergency department believed my appendix was exploding but a clean CT scan left them puzzled. One emergency room doctor walked into my room, took one look at my face, and told my mom and I that I had lupus.
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LIVING WITH LUPUS MAGAZINE
Unbeknownst to us, I had one of the tell-tale signs of lupus right across my face: the butterfly rash. Over the next few months, a flurry of doctor appointments ensued, and we were sucked into a whirlwind of learning about lupus, its impacts, and its symptoms. We were happy to finally have a name for the illness that had been plaguing me likely my entire childhood, but we were also worried about what it really meant to have a chronic autoimmune disease. I began a steroid treatment to combat the inflammation my body was experiencing and later my pediatric rheumatologist recommended that I begin taking plaquenil to control my daily symptoms of lupus. Unfortunately, I was allergic to the treatment.
My mom served as one of my inspirations for pursuing lupus research as an undergraduate. One of her biggest complaints as an adult is experiencing brain fog, a poorly defined cognitive symptom that causes memory disruptions. When she was in college, she often found herself forgetting information she learned in lectures, difficulty with memorizing information, and had a hard time studying. I often used to help her go through flash cards to help her study for her difficult anatomy classes. Later, when I was a student, I studied psychology and took classes about brain health and function. Even though I was learning a lot about the brain and cognition, I was still unable to help her or myself understand the strange symptom.
Just a few years after my own diagnosis, my mom was diagnosed with lupus as well. She finally decided to see a rheumatologist as her symptoms continued to increase as she got older, and she felt that she needed a better answer than those she was given years ago. Her doctor was shocked to learn about her symptoms and medical history because he couldn’t believe she hadn’t already been diagnosed with an autoimmune disease. After multiple medical tests, the doctor determined that she too had lupus and was advised to take plaquenil, which she was also allergic to. A few years later, my mom would also be diagnosed with Sjogren’s, another autoimmune disease.
My professor encouraged me to pursue research as a student, and brain fog became my number one priority. I often consulted my mom about my research studies, asking for her input along the way and doing my best to understand what information would be most helpful to her and other lupus patients. My mom and I have always been extremely close, but battling the same illness together has only brought us closer. It’s not unusual for one of us to text the other and ask, “Have you ever had this symptom happen before?” My mom and I both experience joint and muscle pain, extreme fatigue, itchiness and rashes, brain fog, night sweats,
abdominal pain, photophobia, and visual symptoms of the disease on an almost daily basis. However, my mom tends to have more pronounced symptoms of joint swelling, stiffness, ocular migraine, and dizziness that I rarely experience. Some symptoms I experience though, my mom has never experienced. As a young adult, I was diagnosed with endometriosis which resulted in a hysterectomy to help alleviate some of the symptoms of the disease. My mom has never had severe menstrual issues, marking a significant difference between our disease.
“My mom is one of
my rocks in my life, and while I wish neither of us had lupus, there is no one else I would rather go through the journey with.”
bulging disc in her back that doctors believe is caused by lingering inflammation in her body. Dealing with lupus is never easy but leaning on each other makes the journey easier. Lupus has taught us many things, especially how to be empathetic towards each other and others who are dealing with chronic illness. We both have become better listeners, better self-advocates, and we have deeply learned about lupus. My mom is an avid follower of lupus blogs, the Lupus Foundation, and the Lupus Research Alliance as well as other blogs for Sjogren’s. She is always sending me articles about our disease, and I often share with her my own research of lupus and help her to understand academic articles. Beyond that though, we have also helped each other get through the hard times. My mom is always ready to cheer me up by sending me silly pictures, having movie nights, or sending me care packages with items that will help ease a flare. I always do my best to provide my mom with accurate and scientific information to help her understand her symptoms and test results when doctors are lackluster in their explanations. We have both
shared with each other over the years activities and coping strategies for lupus, like yoga stretches or low impact exercises. More importantly is that we have been able to reassure each other that what we are experiencing is lupus, no matter what doctors or well-meaning people might say. We’ve both been scrutinized by family, friends, and doctors who are less than sympathetic about our illnesses and tend to feel that we are exaggerating our symptoms and we know that we can confidently talk to each other about our problems with no judgment or doubt from one another. Not only that, but we can quell each other’s anxiety about mysterious symptoms by sharing our experience with one another or helping to find research and resources. My mom is one of my rocks in my life, and while I wish neither of us had lupus, there is no one else I would rather go through the journey with. She will always be my inspiration as I continue my lupus research work and I know that together, we will win the battle against lupus.
Interestingly, we often experience similar symptoms at the same time, maybe because we live in the same area and are impacted by weather changes. In a way, my mom serves as a blueprint for what I may one day experience with lupus, and she feels that I am experiencing more severe consequences of lupus at a younger age while she is dealing with them as she continues to get older. As we both get older, we are realizing that many of the symptoms I experience she is either currently experiencing or has experienced before. Although we are both considered to be in remission from lupus, my mom still receives treatment for a LIVING WITH LUPUS MAGAZINE
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UPDATE: WALK TO END LUPUS NOW
®
The Lupus Foundation of America, Greater Ohio Chapter’s intent is to bring back our annual gathering of lupus warriors. Our original idea was to hold hybrid events in Cincinnati and Columbus. However, we did not receive enough volunteers to pull together in-person events in Cincinnati or Columbus. We would love to try again in 2023, but need your support to make these events happen. Be sure to look for future walk information on social media and our monthly newsletter and please offer your time if you are able. We cannot have successful Walk events without our wonderful volunteers. Now, we look forward to the Cleveland hybrid Walk to End Lupus Now®. We invite all of our Ohio lupus supporters to participate either virtually, or by coming to the event that will be held in the Greater Cleveland area (location is TBD). Our preferred date is Saturday, September 24th, but this is still flexible. We are actively working with vendors to determine where the Walk will be held. Please watch for details regarding the Walk in future communications. If you are interested in helping to make the 2022 Cleveland Walk to End Lupus Now® an outstanding event, please join our Walk Committee! We cannot come together without your support. If interested, please contact the Walk coordinator by email at Victoria@LupusGreaterOhio.org or by phone at (440) 717-0183. We look forward to the hybrid 2022 Cleveland Walk to End Lupus Now®!
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LIVING WITH LUPUS MAGAZINE
Dealing with a chronic illness like lupus is often overwhelming and sometimes we need help. The LFA, GOC has a team of trained patient navigators that are ready to assist you. To be connected to a patient navigator in your area contact our office at 1(888) NO- LUPUS or email us at info@lupusgreaterohio.org.
Here are some new programs to ask your local patient navigator about:
We have joined forces with Uber Health to provide reliable transportation to your doctor. It is our goal to reduce barriers to care and transportation is one of them. There is no smartphone required! Patients without access to a smartphone or the Uber app will get notifications with ride details by text message or phone call to their landline. Technology should never be a barrier to healthcare. The Uber Health dashboard is HIPPA-supported and was specifically designed for healthcare companies to handle sensitive data, so they can safeguard patients’ information from start to finish. Please contact the office for more information, we might be able to help you with this barrier. There are some limitations and requirements, let us see if we can help. Call 1-(888) NO-LUPUS.
We have partnered with BetterHelp to support you and your wellbeing by providing you with easy and convenient access to professional therapy online. BetterHelp is offering one free month to our constituents. You can sign up today by visiting our website at https://lfaohio.salsalabs.org/ onemothofbetterhelp/index.html. If you have any questions about the program or you would like assistance registering give us a call at 1(888) NO-LUPUS. Just like seeing a counselor in a clinical setting, BetterHelp allows you to connect with your therapist in a safe and private online environment. All counselors are licensed, accredited professionals. Anything and everything you share is confidential. Access your private chat room on any device with an internet connection at any time. Communicate with your therapist as often as you want and whenever you feel it’s needed via text, talk, phone, & video.
Strategies to Embrace Living with Lupus Fearlessly (SELF), a new online self-management program designed to help people with lupus build and enhance skills in four pillars of lupus self-management: managing symptoms, managing stress, managing medications and working with their healthcare team. You can explore this program more on our website by visiting this page. https://www.lupus.org/ resources/self?utm_source=Chapters
Key features of the platform include: - SELF Activity Center This activity portal provides access to resources, tools, and activities that are tailored to the user’s specific needs and can be completed at their own pace. - Symptom Tracker Users can track and make notes about their symptoms daily, so that they can recognize patterns. - Medication Tracker Users can keep track of all their medications in one place. - Journal Users can take notes at doctor’s appointments, jot down questions to discuss at future appointments, or simply write about their mental and physical health. MAGALIVING WITH LUPUS MAGAZINE ZINE
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“Metamorphosis has always been the greatest symbol of change for poets and artists. Imagine that you could be a caterpillar one moment and a butterfly the next.”
“To all the broken-hearted and anyone feeling sad, may your hearts heal, and may you feel happy in your lives. Flutter as the butterflies do.” – Krystal Read
– Louie Schwartzberg
“A great beginning is sometimes at the point of what you thought would be the end of everything.”
Metamorphosis “Butterflies are nature’s tragic heroes. They live most of their lives being completely ordinary. And then, one day, the unexpected happens. They burst from their cocoons in a blaze of colors and become utterly extraordinary. It is the shortest phase of their lives, but it holds the greatest importance. It shows us how empowering change can be.”
Inching along the earth crunching, munching on misfortune until pain wrapped itself like a cocoon -a castle outside the rooms of a hardened heart. Drowning, surely dying in the dark. Only to emerge from the womb reborn from a tomb of self-inflicted wounds transformed by the Divine spark. With wings of vibrant color carrying the evidence of change arrayed like a roadmap dotted with places been and places going.
Justin Farley
“Beautiful and graceful, varied and enchanting, small but approachable, butterflies lead you to the sunny side of life. And everyone deserves a little sunshine.”
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LIVING WITH LUPUS MAGAZINE
“Happiness is a butterfly, which when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you.” – Nathaniel Hawthorne
Flapping with the wings of grace embraced by the breeze of blessing a chrysalis replaced, made anew by the Spirit's pressing.
– Kelseyleigh Reber
– Jeffrey Glassberg
– Dodinsky
A butterfly symbolizes the acceptance of each new phase in life. To keep the faith as everything around you changes. – Lisa Kleypas
“I think that positivity, real positivity, is like the butterflies. Caterpillar, cocoon, winged creature. When I look at it, I not only see a winged beauty, but I also see a strong beauty.” – C. JoyBell
PATIENT ARTICLE
TANYA D. SMITH
FROM NEAR DEATH TO LIVING A FULL LIFE: HOW I DIDN’T LET LUPUS BEAT ME It was 1986 and I was in the prime of my life when I was blind-sided by Systemic Lupus Erythematosus (SLE). I was away at college when I began having severe joint pain and stiffness. Because of my symptoms, I transferred back home to be near family and friends after completing my Associate of Arts degree. Good thing I did because that is when I had my first major flare—lupus cerebritis. I was admitted to the hospital where I spent several weeks. During that time, the disease was attacking my brain and I was in and out of consciousness for over a week. My family was told I would not survive and if I did, I would be a vegetable. I survived. I am truly a miracle here by God’s grace, mercy and many prayers from family and friends. After my hospital stay, I had a long road to recovery. Life for me was different than before. I had to adjust to my new normal; life as a person living with lupus. I learned what triggers my lupus, what foods to avoid, and how to modify my activities. It was diffi-
cult at first, but I learned to manage. I still like to take walks or drives in the park, go to the movies, go to picnics, amusement parks and carnivals, etc. I just do them later in the day to limit my exposure to the sun. As the days and years went by, I learned to live with lupus. However, one of my biggest challenges was to learn to accept my appearance. The medication I had to take to survive had caused my hair to fall out leaving me with bald patches. Hence, I had to wear wigs. I was fortunate that my hair eventually grew back. And we all know about the drug induced weight gain causing the moon face and Santa Claus belly. I had to accept the fact that I am no longer that skinny girl who could eat or wear just about anything. My suggestion is, learn to love yourself despite the pounds. After all, you are still the same person, just a bigger version of yourself. Once I regained my strength, I returned to college and earned my
bachelor’s degree. After that, I entered the workforce full-time, and I have been blessed to be able to hold down a full-time job. Things were going smoothly for a while then lupus attacked my kidneys—lupus nephritis. More meds, more weight gain, ugh. Here again, lupus affected my work-life balance. During this time, I changed departments at work three times, was a caretaker for my mother until she passed, and met and married my husband, Lavoris (aka Rick). We have been together for 16 years. Rick is a wonderful person with a kind and gentle spirit. Besides my mom, who has since passed away, he has been my greatest supporter and my biggest cheerleader. He encourages me to go after my dreams. Anything I want to do, he always tells me, “You can do this!” It had been a dream of mine to go back to school, so now I am currently enrolled in school part-time to earn my master’s degree. I was already juggling working full-time, raising a MAGALIVING WITH LUPUS MAGAZINE ZINE
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grandchild that has developmental disabilities, and being an independent business owner. Now I have added school to my plate. This was a tremendous change for me because I had been out of school for over 20 years. I see it as a good change. Over the years, I have had a lot of changes occur in my life; some good
and some not so good. As a person living with lupus, I feel it is important to embrace change. Afterall, our reality changes from day to day when living with lupus. Do not be afraid to ask for what you need whether it is work, school, or living accommodations. Do not look at it as, I no longer am able to do x, y, z, but rather as in what ways can x, y, and z be modified so that it is
achievable for me. Sometimes we just need a little modification to get the job done. I refuse to let lupus beat me. My favorite quote is Philippians 4:13: I can do ALL things through Christ Jesus who strengthens me. Remember you can do all things with a little faith.
“As a person living with lupus, I feel it is important to embrace change. ”
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GET INVOLVED
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Host a Third-Party Event Do you have an idea to support the mission? Give us a call at the office to discuss and plan your own fundraising activity to benefit the LFA, GOC. Here are a few examples of virtual events that people have coordinated in the past: Pampered Chef Party, Online Auction, Charity Video Game Tournament. If you are interested in hosting a third-party event, reach out to us for our official guidelines and an application.
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Advocacy Each year, the National Lupus Advocacy Summit brings together the lupus community to pursue a collective vision of
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a world without lupus. In addition, we help to ensure there is a cohesive voice heard in Washington D.C. that ensures the lupus agenda is at the forefront of the legislature. This year’s National Lupus Advocacy Summit will be held on June 26, 27, 28 in Washington D.C. To participate or for more information, please visit https://bit. ly/3pbE1Zh. We invite you to register to be a lupus advocate in Ohio. Our current initiative is to keep lupus in the state budget for the new biennium. Much of the educational and support programming produced by the LFA, GOC over the past two years has been a direct result of the funding provided by the state of Ohio and the Ohio Department of Health. It is imperative that we let Ohio’s leadership know the importance of keeping lupus in the public health agenda. lupusgreaterohio.org/ get-involved/advocate
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WAYS TO GIVE Traditional • Checks Please make checks payable to the Lupus Foundation of America, Greater Ohio Chap ter, and mail them directly to 12930 Chippewa Road, Brecksville, Ohio 44141.
• Stock or Other Securities • Life Income Plans Pooled Income Fund Charitable Remainder Trusts • Creating Healthier Communities CHC #9963
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Through Your Job • Employer Matching Gift Program Ask your employer if they match charitable contributions made by their employees.
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• Amazon Smile • Donatestuff.com Schedule a donation pickup of your gently used goods and pick the LFA, GOC as your charity. • Leave a Bequest You can include the LFA, GOC in your will to support the mission beyond your lifetime. • Give the Gift of Life Insurance Name the LFA, GOC as a sole or partial beneficiary.
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For more information on ways to give, please visit lupusgreaterohio.org/get-involved/donate or contact the office.
PATIENT ARTICLE
MY LUPUS JOURNEY My journey with SLE lupus starts even before diagnosis. As a kid, I had a tough time staying healthy. I was always coming down with a cold, the flu, or some general under-the-weather bug. It was hard for me to keep it from impacting my relationships with my family and classmates. Internally, I would get down on myself and frustrated every time I fell ill which made it even worse. Diagnosis took an incredibly long time like most lupus patients. I was dismissed by doctors, saying that I had a weak physique which was likely brought on by depression, anxiety, or everyday stressors. I actually got lucky and found out my diagnosis by making three decisions. At the time, I had no idea how those decisions would change my life and help me.
extremely empathetic and a wonderful listener. She had her suspicions about the connection of my unrelated constellation of symptoms. For those newly diagnosed, step one is to get yourself a good doctor who is patient, listens and is very observant.
First, I moved and had to get a new primary doctor. My new doctor was
Third, after my daughter was born, at about nine months old, I was having
Second, my husband and I decided to add to our family of two and make it three. I was hoping I would not mind being pregnant, but I am sad to say it was awful. Around this time, my mother got diagnosed with Sjogrens and Fibromyalgia. We spoke about family illnesses and the more we talked, the more I was concerned that the female line of my family had something genetic. I was definitely more concerned about my child than myself at this point.
AMY FILBERT a lot of strange physical symptoms. I attributed these to being a new parent and not getting very much sleep. The pain kept getting progressively worse, creeping up from my ankles until everything settled in my hip joints and tendons. It was so bad at times that I got a shower chair and could not walk around a lot or use stairs because it felt like my joints were on fire. I would complain to my husband about the pain and how bad it felt. The pain and not being able to keep up with my young child did it for me. I went back to my new favorite primary care provider and told her I was ready to get whatever testing she recommended because I was done with all of this. But I soon found out this was only the beginning of a long journey. My diagnosis came on October 31, 2011, but the medicines that would ultimately provide me with the most relief would not come until February 27, 2022. Saphnelo is the current infusion medicine that has given me moderate success in pain management to date.
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Before finding medicine that helped me, I had to develop a mindset and strategy for my disease management. I had to learn to be kind to myself while finding the pieces of the puzzle to manage my newly diagnosed disease. Everyone managing a painful disease needs to find their limitations. Finding that place where you know if you take one more step on your walk there will be a price to pay with your body. Knowing that if you do not refuse that invitation to an event, you can be assured you will ruin your weekend laying in bed in pain. The point where your body is telling you, “If you push me one more inch, I will push back harder, and it will not end well.”
walk me or not. If needed I know I can also enlist my daughter to be the lead dog wrangler. Then I am able to choose if I can walk with them or behind them depending how I feel.
Balance for me comes in many different forms: mental, physical, medical, and metaphysical. Physical balance meant I had to move immediately to a house that had everything on the first floor that I could access easily. Stairs are not and will never be a friend to me. I do not intend to waste my energy on them either. My workouts are always extremely light. I may use my recumbent bike for five to eight minutes and do an easy yoga video on bad days. I know now there is no shame in taking it easy and moving slower. Walking the dog can be good or bad. I must judge how I feel before I decide whether to let the dog
The three most important coping mechanisms in my management system are reminding myself I am strong, that I can achieve the things I want, and that the goals I make for the future are achievable and possible with the right mindset. When educating my daughter about my autoimmune disorder I could not stress these enough.
Mentally, I have had to be tougher and stronger than I thought I was capable. I am happy to say that we can fortify our minds with things like individual counseling, medication, and mental breaks. Metaphysical practices of yoga, meditation, music, showing kindness to yourself, educating others, community involvement and future goal planning can have a great impact on how to approach lupus too.
For example, I decided to go back to school part-time in 2021 and get my bachelor’s degree from Ohio University. It had always been on my mind to finish school and achieve that goal. It is going well and this summer I am interning
for the Lupus Foundation of America, Greater Ohio Chapter too! All things are possible when you have the right mindset. Future goals include visiting some National Parks, and working on my leg stability to visit Macchu Pichu with my family. However, one of my favorite ways to stay positive and get rid of my negative feelings towards lupus is to volunteer in the community. I have had the pleasure of working with three organizations in my community to get rid of those negative thoughts. I love helping the Greater Cleveland Habitat for Humanity for their annual walk, the Lupus Foundation of America, Greater Ohio Chapter with their fundraising walk and other events, and the Stay-Awhile Cat Shelter where our family fosters kittens a few times a year. Nothing beats my lupus blues like a pile of cuddly kittens. I want to leave other lupus patients with one, last final thought. Remember, although you must adjust and be realistic in planning your own balancing act, you can still live a full life. Lupus is not the main character in your story, you are.
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Be Fierce. Take Control. to Raise Awareness of Lupus. While many people have heard of lupus, few know anything about the disease beyond its name. Lupus is a lifelong autoimmune disease that is most common in young women. It can cause inflammation and damage to any part of the body, causing symptoms like joint pain, fatigue, and skin rashes. Because these symptoms are also common for many other medical conditions—and symptoms show up differently for everyone who has lupus—it can take years to receive an accurate diagnosis and begin proper care. During that time, lupus continues to cause irreversible damage to the body. The American College of Rheumatology (ACR) and the Lupus Foundation of America (LFA) wanted to change that and minimize the impact of lupus on the lives of young women. They’ve teamed up to launch the Be Fierce. Take Control.TM campaign to raise awareness of lupus, its symptoms, and how to take the next step if they are experiencing symptoms. The campaign encourages African American and
Latino women, who are 2-3 times more likely to develop lupus, to take control of their health, the way they run the other important areas of their lives, and not ignore it if they haven’t been feeling their best. The campaign website, befiercetakecontrol.org, houses a number of resources to help women take control of their health: • Resources about lupus, its symptoms, and frequently asked questions • “Could it be Lupus?” interactive questionnaire that will help women figure out what to do about their symptoms • Symptom tracker for keeping track of symptoms over time • Guide for preparing for a healthcare provider visit We don’t think anyone should wait YEARS for a diagnosis. The sooner someone is diagnosed, the sooner
they are on their way to managing their symptoms and avoiding the potential for long-term damage to their health. That’s why we’re here to help and provide the information and resources you need to take control of your health. You can help spread the word about Be Fierce. Take Control.TM by sharing the website and using #BeFierceTakeControl on social media. By sharing, you are becoming a vital partner in driving further awareness about this mysterious disease to those who need it most. https://befiercetakecontrol. org/?utm_source=Chapters befiercetakecontrol.org/es
This program was supported by the Grant or Cooperative Agreement Number, NU58DP00690, funded by the Centers for Disease Control and Prevention, in partnership with the Lupus Foundation of America.
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“Love that it gave me tools to use and not just an article to read. I printed a tool to track how lupus is impacting my life and a guide about developing my ‘elevator speech’.”
Take Charge is a weekly education email series for people with lupus, including those recently diagnosed. Each week for 12 weeks you’ll get an email from our Health Educator Specialists with tips and resources to help you better manage lupus. With Take Charge you’ll gain knowledge and skills that can help you: • Explain to others how lupus affects you • Stick with your treatment plan • Find and ask for the support you need • Make the most of your doctor appointments • Identify and track your lupus symptoms • Cope with lupus and its day-to-day challenges
Subscribe Lupus.org/TakeCharge
https://www.lupus.org/resources/take-charge?utm_source=Chapters
This program was supported by the Grant or Cooperative Agreement Number, NU58DP00690, funded by the Centers for Disease Control and Prevention, in partnership with the Lupus Foundation of America. 18
LIVING WITH LUPUS MAGAZINE
THE TOP 5 THINGS
By Leslie Vizcarra-Tierney
Vice President of Operations & Patient Navigator
Gardening Can Teach You About Self - C are If you feel that your thumb is not as green as some gardening enthusiasts you may just need some guidance or helpful tips. As far as its relationship to self-care there is an undeniable correlation between gardening and selfcare. Gardening, like self-care, takes time and patience before the benefits can be enjoyed. The effort you put into gardening, just like the effort you put into yourself, will be reflected in the outcome. You will see a better version of yourself and the plants you are caring for. There are many helpful go-to-tips and pointers to help with both gardening and self care. See how closely they are related! Let’s explore the helpful tips. 1. Schedule Time and Create a Calendar Gardening does not have to be a daunting task. You should not feel intimidated by the project. Of course, you will need to have time and give your garden attention. Selecting what type of garden you have time for is
the first step. In this busy world, we are all overworked and have a lot of responsibilities. Setting aside time can be a challenge, but the key is to start small and work towards a goal that you set. Select a project that fits well with your schedule. Create a calendar and determine how much time you can devote to your hobby. Perhaps a simple potted plant is all your schedule allows for at this time. Perhaps you have time for a small raised garden in your yard. Some cities have community gardens that you can join and work with others to tend the plants. It is all your choice based on the time you create and allow in your schedule. The same goes for self-care. You want to set realistic goals for yourself. You may have the intention to start a new self-care practice but if you give yourself too many responsibilities you are likely going to fall back into the same habits. Allowing yourself to build up to a goal is the best way to create a healthy habit. For instance, maybe you have been wanting to start
an exercise routine. Set yourself up for success by making small changes first. For example, the weather is getting warmer in Northeast Ohio and you want to start walking outdoors. Perhaps your goal is to walk for twenty minutes every day. Start slow and give yourself time to get there starting with walking twenty minutes three times a week. Starting slowly will allow you to feel accomplished and save yourself from disappointment if you make your expectations reasonable. 2. The Soil is your Foundation and Nutrition is the Key Every planned garden starts with the soil. It is the foundation of a healthy plant. Luckily, in gardening, there are a variety of options to select for your plant. Planning what you want to grow and learning what type of soil the plant likes, guides you toward developing your skills to be a wonderful gardener. When you have good soil the roots of your plant will flourish and condition your garden to thrive. Good soil provides the nutrition for
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your plants and confidence for the gardener to know you are on the right track. For self-care, knowing and understanding what your body needs will help develop your foundation. You too need to care for yourself with proper nutrition to ensure you have proper energy and strength. If you are someone that is leaning on heavy caffeine to get through the day, start thinking about balance. Be sure you are giving yourself nutrients that can help you feel less fatigued and naturally energized. Having a proper diet and selecting food to fuel your body will help to provide stamina throughout the day. Instead of more caffeine, hydrate. Eat smaller healthy snacks instead of looking for a sweet sugary treat in the middle of your day. Think of grabbing some fruit and yogurt. Try adding chia seeds or flax seeds for extra nutrition. Eat almonds or nuts instead of chips. Balancing your nutrition is just like providing your plants with the proper nutrients. Both are essential to thrive! 3. Proper Sunlight and Protection All plants require sunlight. Some plants need less than others but it is important to know your plant and 20
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make sure that your plant is positioned in a way that will help it grow and not harm it. This takes a little research on your end to make sure you plan to place your plant in an area that is suitable for optimal growth. You will not have a happy healthy plant if it gets too much or too little sunlight. As a lupus patient, self-care means taking caution in the sun. Like plants, each lupus patient is different with regards to the sun. However, sunblock is necessary for all lupus patients. With proper protection and planning, lupus patients can enjoy being outside. But be sure to take caution about the amount of sunlight you are exposed to and make adjustments. Be sure to check the expiration date on the bottle and reapply sunblock after getting wet or sweating. Take breaks and limit sun exposure times. Some patients are extremely sensitive to sunlight whereas others are not as extreme. The main point is to know your limitations, take precautions, and wear sunblock and protective clothing. Sunlight does help our bodies make vitamin D. With proper sunblock protection, 20 minutes in direct sunlight can help to increase your vitamin production.
4. All Living Things Need Attention and Affection Well-maintained gardens are looked after. Weeds that sprout need to be pulled. Adjusting the amount of water may be needed. Tending to your garden and noticing what it needs is very important. Maybe some insects do not belong. By the same token, some insects like bees and butterflies play a role in helping the plant to be healthy and bloom. Some plants grow well with others. While other plants can be placed to help eliminate unwanted pests. Mother Nature is a team effort. Working together as a team with Mother Nature will yield healthy and beautiful plants. The gardener takes the lead to make sure everything is running smoothly, providing attention and carefully tending to the garden to grow and blossom. It is important for you to also pay attention to your own needs. Make sure that you surround yourself with people that help you grow and blossom into the person you are and want to be. Look for the people around you that help support you to be your very best. Be sure to honor those relationships and let them know they are appreciated. Weed out the people
that tend to dim your light by setting boundaries. Recognize the people that help encourage you and limit interactions with the “pests’’ in your life. This helps maintain your own “safe” space for self-care, sets boundaries, and allows you to feel more fulfilled and loved. 5. Enjoy What You Do If caring for a garden seems overwhelming and you think that everything you grow does not work, try a succulent! You only need to water them when they are dry and give them proper sunlight. Succulents tend to be hardy and do well. Taking care of plants should be enjoyable and not
a daunting task. If it seems too hard, scale back to make sure you are appreciating your time spent taking care of your potted plant or garden. You are meant to be fulfilled and life is meant to bring some happiness. Try to live your life with joy and gratitude, even on your tough days. When you take control of your life and spend it by doing the things you want to do instead of the things you dread doing you have managed to find the path of self-care. You are important and deserve to enjoy what you do and who you spend your time with. Overall, you can choose the path you want in gardening and your life. Take
the time to plan. Set yourself up for success. Proper nutrition will encourage healthy growth. Proper sunlight and protection maintains a healthy structure. Giving yourself attention and surrounding yourself with positive people will lead to success. Enjoy the time that you have created. Be happy with your choices and honor the small things in life. Explore new activities to learn and enjoy. If you are looking for a tribe to help support and encourage you, consider checking out one of our many support groups. Someone that inspires me to be the best version of myself wrote a short poem. I would like to share with you. I find it fitting for this magazine’s article.
Armonia
Draw near to my heart and I will tend you. I’ll help you nurture the roots of your soul. I’ll cherish and adore you. You’ll shine under my love. I will watch you soar with beauty and grace. If drought withers the leaves of your heart, I will water you until you rise again. A bloom in all its glory. Author: Anonymous
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PATIENT ARTICLE
JORDIN MARIA, MSW, LSW, LUPIAN
SLE-AVE ME ALONE: THE COMBINED EFFECTS OF LUPUS, CHRONIC PAIN, & MENTAL HEALTH What is Lupus? How does it affect our lives? Lupus is a chronic illness, an autoimmune disease for which there is no cure. This means the disease walks hand in hand with chronic pain. People with lupus suffer from various types of chronic symptoms that are often painful. We see rheumatologists to diagnose our illnesses and seek treatment to stop further progression of a disease which can be fatal, as there is no known cure. If you have lupus the sad truth is that you will not be cured. You will not wake up one day and miraculously recover; as if it had all been a dream. This is a mental realization that anyone with lupus will have to come to terms with. This disease does not have a happy ending. Furthermore, it often takes on average a decade to be officially diagnosed with the correct autoimmune disorder, let alone lupus. For me it started when I was 16, with mild back pain. From there, it turned into 9 years of doctor’s appointments and every kind of test you can imagine. Some highlights include being shocked with electric current, being temporarily radioactive, and countless pricks of needles for blood. Finally, one day, I sat in my family doctor’s office pleading with him for an answer as to why I get sick so often and that was the first time I ever heard the words “autoimmune” applied to me. It clicked. Of course. But then came more tests, scans, conferring with my rheumatologist, and countless medication trials. The battle
wasn’t over yet. Medication is designed to help manage the symptoms and to slow the progression of the disease. However, they do not stop the disease. It does not take away all (or even most) of the pain or discomfort. It only helps patients manage it. Over time, stronger and more intensive medications must be taken. They may go from oral medication to self injectables, to chemotherapy drugs, to IV infusions, and so on. The illness is not only chronic, but very serious. I hope to show the gravity of the situation, and the changes that the diagnosis has had on my life. Mental health is affected at every step of this journey. In the beginning, people feel lost, confused, and they don’t understand why no one can figure out what is wrong with them. They begin to doubt themselves and their doctors. They may begin to feel depression, anxiety, and hopelessness. Oftentimes, with chronic pain, comes chronic exhaustion. When an individual hurts constantly, over a long period of time – it is draining to their very core. That fatigue has a toll on their mental functioning. Many people develop difficulties with focusing, brain fog, and poor memory. The chronic pain that comes with lupus oftentimes prevents people from participating in activities, hobbies they enjoy, and even basic housework. People struggle to carry laundry, to cook for themselves, to clean, to sleep, to play with their children. This can
lead to them feeling like failures – further increasing anxiety and depression, and adding feelings like guilt and shame. As a mental health professional, I see this all the time. It breaks my heart. But it is so important to spread hope. Lupus may be a chronic diagnosis but it is not who we are. We have the power to care for ourselves, to pay attention to and to nurture our physical, mental, emotional, and spiritual wellbeing. We can wrap ourselves in the love and strength of our families and the communities around us. We can spread the word about lupus to others, and inspire others with our stories – furthering the cause, encouraging research, and taking new steps toward a cure each day. Health is transformative. Healing is possible. As people who struggle with our illness, with chronic pain, and mental health – we can be intentional in our actions and choose to lead transformative lives. We have control over how we live, we have control over how we feel, and we have the power to rise above our circumstances. And so I challenge you, my fellow lupians, to rise. Seek out mental health professionals, learn how to be your own advocate at doctor’s appointments, bask in the support of your community. Choose to focus on your health as a whole, rather than in parts, and you will see a drastic difference. See yourself rise.
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Update on the 2022 National Lupus Advocacy Summit Since last year, the Lupus Foundation of America has been excitedly preparing to host the 2022 National Lupus Advocacy Summit, while continuing to monitor the COVID-19 pandemic as well as security changes on Capitol Hill. There is nothing more important to us at the Foundation than the health and well-being of our community. With that in mind, we have made the tough decision to once again transition the Summit to an entirely digital event open to all lupus advocates. There are two significant factors that have led us to this decision. First, COVID-19 continues to affect Americans and despite the many prevention protocols we would have had in place at the Summit, we believe that an indoor event of its size could carry risk for people living with lupus. Additionally, significant security changes have been implemented on Capitol Hill over the past year which would make it more difficult to hold our traditional meetings with members of Congress. Those changes, likely to be in place through the end of the year, include the closure of cafeterias and waiting areas in the congressional office buildings, requirements for congressional staff escorts when moving around the buildings, and limits on the number of people able to attend meetings. Moreover, many congressional offices continue to take all meetings virtually and are not accepting in-person meetings.
2022 Digital Lupus Advocacy Summit: June 27-29, 2022
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RESEARCH AND NEWS Lupus Foundation of America Rallies Communities to Make Lupus Visible for Lupus Awareness Month
Department of Defense Releases Pre-Announcement of FY 2022 Lupus Research Funding Opportunities
The Lupus Foundation of America is leading the effort to Make Lupus Visible throughout the month of May for Lupus Awareness Month as it rallies communities across the country to raise awareness of lupus and funds to support lupus research, education programs and support services.
The FY22 Defense Appropriations Act provides funding for the Lupus Research Program (LRP) to support the full spectrum of research projects or ideas that specifically focus on scientific and clinical lupus issues, which, if successfully addressed, have the potential to make a major impact in lupus research. The managing agent for the anticipated funding opportunities is the CDMRP at the U.S. Army Medical Research and Development Command (USAMRDC).
Lupus is an unpredictable and misunderstood autoimmune disease that ravages different parts of the body, causing the immune system to attack healthy tissue instead of fighting infections. It is difficult to diagnose, hard to live with and a challenge to treat. Many of the debilitating symptoms and impacts of lupus can’t be seen from extreme fatigue and excruciating joint pain to impacts on the organs like the kidneys, heart and lungs. Because many of these symptoms aren’t visible, it can often leave those living with lupus feeling misunderstood and isolated. Throughout the month of May, the Lupus Foundation of America will be shining light on some of the invisible impacts of lupus including symptoms and diagnosis, the impact of lupus on the body and quality of life, as well as the importance of research and clinical trials.
The LRP is providing the information in this pre-announcement to allow investigators time to plan and develop ideas for submission to the anticipated FY22 funding opportunities. The FY22 LRP funding opportunity announcements for the following award mechanisms will be posted on the Grants.gov website. Pre-application and application deadlines will be available when the announcements are released. For more information and to submit your application read more here: https://www.lupus.org/news/department-of-defense-releases-preannouncement-of-fy-2022-lupus-research-funding-opportunities
LFA,GOC BLOG AND PODCAST We are so proud to bring you our blog, Lupus Night Light, and our podcast, My Lupus Living Room. On these platforms, we talk about a wide variety of topics. We cover things like Lupus and hair, mental health, and patient stories! We want to thank all of our previous podcast guests, including: • • • • • • • • •
Alethe Acree Kari Kepic David Santoli Rachelle Yarnell Kathy Holmes Adrienne Fernandez Margaret Lizotte Ryan Pike Shannon Cabot
• • • •
Lisa Evans Katie Gugle Rita Piccin Allison Fedon
• If you have something to say, we want to hear it! If you would like to be a guest on the My Lupus Living Room Podcast, or a guest writer on our blog, please email us at info@ lupusgreaterohio.org or call us at (440) 717-0183.
Podcast, Episode 13- Cat Lipak Cats Amazing Journey Suzanne talks with Cat Liptak, a lupus patient and long-time member of the LFA, GOC. Cat talks about her journey with this cruel disease, challenges, and her involvement in the LFA, GOC. We hope you enjoy this episode!
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Could You Have Lupus? Lupus is a chronic autoimmune disease that causes inflammation in various parts of the body. The disease can range from mild to life-threatening. Ninety percent of those diagnosed with lupus are females between ages 15 and 44, but lupus also occurs in men, older people, and children. Lupus can be very hard to diagnose because symptoms vary from person to person, can come and go, and can mimic symptoms of other illnesses. *U is important to know the symptoms of lupus and to know if you are at risk for this disease. Here is a simple test to help you. Read each question and answer it in terms of your current AND past health.
Brain and Nervous System
Eyes, Nose, and Mouth
Have you had a seizure or convulsion?
Have you had sores in your mouth or nose that lasted more than five days?
Have you had unexplained confusion that lasted more than an hour? Have you had unexplained fever higher than 100º F/38º C for more than a few days that was not due to infection?
Have you developed irritation or dryness in your eyes or mouth for more than a few weeks? Stomach and Intestines
Heart and Lungs Have you felt chest pain while taking deep breaths? Have you had a stroke or heart attack?
Muscles and Joints Have you had stiff, tender, and swollen joints that feel worse in the morning?
Kidneys Have you been told you have protein in your urine? Have you had swelling in your legs and ankles on both sides at the same time? Blood and Circulatory System Have you been told you have anemia, low white cell count, or low platelet count? Have your fingers and/or toes become pale or red or blue, or felt numb or painful? Have you had blood clotting problems or a miscarriage?
If you have had any symptoms like these, especially if you have had several, talk to your doctor about lupus. Early diagnosis and proper medical care are the best ways to manage lupus. Please turn over this page for more information.
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Have you had unexplained weight loss or abdominal pain or tenderness when your belly is touched?
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Have you had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep? Skin Has your skin broken out after being in the sun, but it’s not a sunburn? Have you had redness or rash across your nose and cheeks in the shape of a butterfly? Have you had sores on your skin that would not heal? Have you had sudden, unexplained hair loss?
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Greater Ohio Chapter Programs Available: Let's Talk About It Webinar Series $GG FKDSWHU VSHFLILF SURJUDPV KHUH Living with Lupus Magazine Lupus Night Light Blog My Lupus Living Room Podcast Patient Navigator Program Educational Summits & Classes Support Groups Use this QR code to access program & educational resources. Local State Advocacy
$OWKRXJK WKHUH LV QR FXUH IRU OXSXV HDUO\ GLDJQRVLV DQG SURSHU PHGLFDO WUHDWPHQW FDQ VLJQLILFDQWO\ KHOS WR PDQDJH WKH GLVHDVH ,QFUHDVLQJ QXPEHUV RI UHVHDUFK VWXGLHV DUH XQGHUZD\ WR GHYHORS QHZ DQG LPSURYHG WUHDWPHQWV IRU OXSXV DQG WR ILQG D FXUH The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest, most unpredictable, and devastating diseases, while giving caring support to those who suffer from its brutal impact. Through a comprehensive program of research, education, and advocacy, we lead the fight to improve the quality of life for all people affected by lupus. Contact the LFA or a chapter that serves your area to find out how you can become involved in our mission and how we can help you. RevJTFE 2000 L Street NW, Suite 410 20036 | Ohio 800.558.0121 202.349.1155 | Lupus Foundation of America |Lupus Foundation of Washington, AmericaDC Greater Chapter
www.lupus.org
|
© 2013
12930 Chippewa Rd, Brecksville, OH 44141 | 1 (888) NO-LUPUS (440) 717-0183 | LupusGreaterOhio.org | © 2013
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Suzanne Tierney, CEO/President Suzanne@lupusgreaterohio.org
I have spent the last 30 years dedicated to the lupus patients in Ohio. The goal is to provide a better quality of life until a cause or cure for lupus is found. My passion is providing programs to empower those affected by lupus so that they will have a better journey with lupus through education and emotional support. Lupus does not have to be a lonely, miserable, and misunderstood illness. My goal is to provide my chapter with the tools and resources to provide such services to all those in the state of Ohio.
Leslie Vizcarra
Vice President of Operations & Patient Navigator Leslie@lupusgreaterohio.org I’m a registered nurse and have a BSN from Ohio University. My primary role is to help people understand lupus and provide general health education. I strive to build working relationships, solve problems and support patients while they learn how to best manage their symptoms. I started volunteering for the LFA, GOC over 20 years ago. My dedication is driven with a passion to help fight lupus and was inspired by all the people I have met along the way.
Stephanie Holmes
Administrative Assistant Stephanie@lupusgreaterohio.org I have a very long history with the LFA, GOC. My mom has lupus and she has worked here my entire life. I have seen this organization grow into what it is today, and I am so honored that I get use my skills and learn new ones. As a little girl, I would seal envelopes while my mom was working and now, I am posting to social media and editing videos for the LFA, GOC. I graduated from Capital University with a BA degree in media communications and a minor in public relations.
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LIVING WITH LUPUS MAGAZINE
Kathy Holmes
Finance Manager Kathy@lupusgreaterohio.org I was diagnosed with lupus in 1989 and joined the Lupus Foundation of America, Greater Cleveland Chapter the same year. I have been able to grow with the organization, as it became the LFA, GOC. Knowing how important it was to have somewhere to turn when I was first diagnosed is what motivates me to do all I can to help our chapter continue in our mission. Being in remission for the past 20 years has enabled me to take an active part in the growth of our chapter.
Tina Flynn
Events & Program Assistant Tina@lupusgreaterohio.org I graduated from Purdue University with a BA and from The University of Akron with an MA, both in Communication. With my degrees, I have focused on nonprofit communication as I have always enjoyed working for nonprofits and helping those in need. Working for LFA, GOC is truly rewarding because I know my efforts have a direct effect on our community members. I’m a jack of all trades and help with everything from database management to marketing efforts to event help.
Adrienne Rice-Fernandez
Lead Project Coordinator Adrienne@lupusgreaterohio.org I help with anything from grant writing, coordinating advocacy efforts, managing projects, writing/ editing and whatever else our office needs. I’m also a patient, so finding a cause and a cure is especially important to me. I love speaking with patients and caregivers when they call the office because I can empathize and offer a sympathetic ear.
Mackenna Willis
Marketing Manager & Graphic Designer Mackenna@lupusgreaterohio.org I’m the marketing manager and creative developer when it comes to strategizing new ideas for Lupus awareness. As a graduate from Bowling Green State University with a BFA in graphic design, I’ve always envisioned utilizing my skills to make a difference. My enthusiasm to help others through design has always been a passion of mine and having the opportunity to share and grow with the LFA, GOC team has been nothing but inspiring.
Aletha Acree
Community Outreach Coordinator Aletha@lupusgreaterohio.org I am the devoted mother of two wonderful sons, they are the reason I fight lupus daily. I share my story everyday hoping that it might help or encourage someone else on their journey. I try to leave lupus patients with these thoughts and that is keep your environment positive in all aspects and do what you can while you can!
Victoria Hornikel
Event Coordinator Victoria@lupusgreaterohio.org With a lifelong passion for service, I found the Nonprofit Administration program at Cleveland State was perfect for me. After obtaining my degree, I began working with the LFA,GOC. I was truly blessed to start my career learning from this brilliant team of skilled and passionate lupus advocates. After some time away from the Foundation, I am so happy to be back working on this mission. I can’t wait to connect with fellow supporters in the fight to end lupus, and I hope to see you at the next gathering of lupus warriors.
LIVING WITH LUPUS MAGAZINE
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THANK YOU FOR READING OHIO’S LUPUS MAGAZINE! FOR THE MOST UP-TO-DATE INFORMATION FROM THE WORLD OF LUPUS, PLEASE VISIT US AT WWW.LUPUSGREATEROHIO.ORG. THE FUNDING FOR THIS CAMPAIGN IS FROM AN EARMARK FROM THE STATE OF OHIO AND MANAGED BY THE OHIO DEPARTMENT OF HEALTH. EMAIL INFO@LUPUSGREATEROHIO.ORG WITH ANY QUESTIONS OR CONCERNS.
Get in Touch:
Lupus Foundation of America, Greater Ohio Chapter 12930 Chippewa Road, Brecksville, OH 44141 (440) 717 - 0183 1 (888) NO - LUPUS
Instagram.com/lupusgreaterOH Facebook.com/lupusgreaterOH Twitter.com/lupusgreaterOH
