WITHLivingLUPUS 10ISSUE Pearls Wisdomof We Live with Lupus Support Group: Pearls of Wisdom Pgs. 13-15
I chose this topic for this quarter’s issue of our Living with Lupus magazine for multiple reasons. It is my hope that we stop and think before we speak and that our hearts work on better communication with others. Words are powerful. How often do we really think before we speak?
First of all, I love pearls. Notice the cover of the magazine. Not one pearl is perfectly shaped, but all of them are radiantly beautiful when collected and strewn together, uniting them to be a beautiful strand to wear proudly. The properties of pearls differ. The unique luster of pearls depends upon the reflection, refraction, and diffraction of light from the translucent layers. The thinner and more numerous the layers in the pearl, the finer the luster. The iridescence that pearls display is caused by the overlapping of successive layers, which breaks up light falling on the surface. In addition, pearls (especially cultured freshwater pearls) can be dyed yellow, green, blue, brown, pink, purple, or black. The most valuable pearls have a metallic, highly reflective luster. What does a pearl symbolize?
I remember many pearls of wisdom through the years, from parents, mentors, and peers. I often chuckled at them and then forgot about them. Now I find myself searching for these pearls to bring them back into my world. Webster says, “they are a wise word or statement that many times can offer humor.”
As we navigate our post-COVID world, it appears that words just roll off our lips without much thought of their impact to us and to others. Many of us seem to have lost patience and kindness. Many more have developed extreme anxiety, unreasonable expectations, and isolation. Communication with our families, friends, and colleagues has changed so much. Losing that personal contact with people during isolation has truly given many people social anxiety. I can go on and on about these issues, but just as I tell my family and staff, “I know the problems, so what are the solutions?”
Yes, technology is also to blame. How many of you text? When was the last time you picked up the phone to check in on a friend or family member?
Last Mother’s Day, we asked many of you to share those famous sayings from your moms. They were a pure delight to read. So, I thought maybe it is time to bring out the “Pearls of Wisdom” in your world that you can share with the rest of us.
These past several years have shown many of us the value of words. The world of communicating with each other has taken flight into a whole new journey. Some of you may not agree with me and that is fine. But in my world and the world of lupus that I serve, there is a great deal of sadness. Together, we can change that.
Pearls of Wisdom What is a pearl of wisdom? It is often described as a wise word or statement and is sometimes even humorous.
Pearls are the ultimate symbol for wisdom. Valued for their calming effects, pearls represent serenity, while being able to strengthen valuable relationships and convey a sense of safety. Pearls also symbolize purity, as well as integrity and loyalty.
Suzanne
• “The easiest way to organize your stuff is to get rid of most of it.”
Here are some other references to the meaning of pearls found in religion:
• According to The Koran, the pearl can be found in Paradise. It’s one of the greatest rewards there. This precious gem is also symbolic of perfection.
• Because they symbolize religious purity, pearls became sacred objects to Christians by the Middle Ages. During early times, Christians believed the pearls that covered the Holy Grail purified its water.
• “Be nice to nerds. Chances are you’ll end up working for one.”—Bill Gates
I can go on and on about pearls. For a good read on them, visit Pearl Meaning: The Myths Behind These Sea Gems - TPS Blog (thepearlsource.com).
But let’s focus on the real issue here, which is what we say and how we say it. The most important meaning from a pearl is that it symbolizes wisdom, integrity, beauty, and loyalty. So, throughout this magazine, please take a look at some “Pearls of Wisdom” that we found to share with you. We hope that these pearls will remind us that future conversations and words that come from our beautiful lips should reflect the beauty that we have inside of us to share with the hurt and bruised world we live in.
• “Lower your expectations of earth. This isn’t Heaven, so don’t expect it to be.” —Max Lucado
• “If you think you are too small to be effective, you have never been in bed with a mosquito.” —Bette Reese
• “Just because it didn’t last forever, doesn’t mean it wasn’t worth your while.”
• “A thousand words will not leave so deep an impression as one deed.” —Henrik Ibsen
• “Why hoard your troubles? They have no market value, so just throw them away.” —Ann Schade
• “Men are like wine. Some turn to vinegar, but the best improve with age.” —C.E.M. Joad
• “I am not funny. My writers were funny. My direction was funny. The situations were funny. But I am not funny. I am not funny. What I am is brave.”—Lucille Ball
• “The greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances.”
• “Fire and swords are slow engines of destruction, compared to the tongue of a gossip.” —Richard Steele
Suzanne LupusPresidentTierney&CEOFoundation of America, Greater Ohio Chapter
• “Life is like an onion; you peel off one layer at a time and sometimes you weep.” —Carl Sandburg
• “The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart.” — Helen Keller
• Pearls symbolize purity to both Hindus and Christians. This is where the “brides wearing pearls on their wedding days” tradition is said to have started, which continues today.
“You cannot soar with the eagles as long as you hang out with the turkeys.”
Let’sWashingtonallaspire to be like a beautiful strand of pearls. Together, we can make change that has real meaning, one conversation at a time.
—Martha
• “Life is not measured by the number of breaths we take, but by the moments that take our breath away.” —Maya Angelou
• “People who are wrapped up in themselves make small packages.”
• “I’ve learned that even when I have pains, I don’t have to be one.” —Maya Angelou
•
CONTENTS Pg. 1 - 2 Letter from Suzanne Pg. 4 Navigating The Pediatric Lupus Journey Pg. 5-6 Patient Navigator: Rita Piccin Pg. 7 Walk to End Lupus Now® Pg. 8 Programs Pg. 9-10 GSK Pg. 11-12 Ways to Get Involved & Ways to Give Pg. 13-15 We Live with Lupus Support Group: Pearls of Wisdom Pg. 16-17 Be Fierce & Take Charge Pg. 18-22 How Stressed are You? Pg. 23 Where Should I Go For Care? Pg. 24-26 Research & News Pg. 27 Blog & Podcast Pg. 28-29 Could It Be Lupus? Pg. 30 Staff Page 24-26 13-155-6PatientNavigator:RitaPiccinPearlsofWisdom NewsResearchUpdate 18-22HowStressedAreYou?
4 LIVING WITH LUPUS MAGAZINE JOIN US FOR OUR FOUR-PART NAVIGATINGSERIES!THE PEDIATRIC LUPUS NAVIGATINGJOURNEYTHE PEDIATRIC LUPUS JOURNEY SAT. AUG 27 BETH PIOTROWICZ, LSW Managing Lupus ELIZABETH BROOKS, MD Working with Your Doctor VIRTUAL SUMMIT SERIES PAST SESSIONS: SAT. SEP 10 KELLY WISE, PHARMD No Blame, No Shame: How to Win the Medicine Game STACY ARDOIN, MD Growing Up with Lupus SESSIONS:UPCOMING Being prepared is the best way to navigate any journey. Join us for our four-part webinar series to educate and empower our pediatric lupus community. The pediatric lupus patient and their caregiver(s) will have the opportunity to learn and ask questions from leading experts in the eld of pediatric rheumatology. Symptoms of lupus can be confusing and frustrating for patients and caregivers alike, but there is an entire community of healthcare professionals dedicated to preparing you for your journey. The Lupus Foundation of America, Greater Ohio Chapter can also help you navigate a path towards living well with lupus.
5LIVING WITH LUPUS MAGAZINE
BY: RITA PICCIN
WHEN A PATIENT NAVIGATOR COMES A-CALLING:
How to Make the Most of the Patient Navigators at the Lupus Foundation of America, Greater Ohio Chapter
My name is Rita Piccin, and it has been my pleasure and honor to serve as a Patient Navigator (“PN”) with the Lupus Foundation of America, Greater Ohio Chapter. Many of you may have received a phone call from myself or another PN several times throughout the year. The PNs make these phone calls to “check-in” with a lupus patient, to see how the patient is doing and to let the patient know of current and new services or as sistance that the chapter provides. Maybe some of you have won dered who a PN is and what do they do? Why are the PNs making these phone calls? How can these calls help you, the lupus patient? All of these are very good ques tions; and I hope to answer them, so that you can make the most of the PNs when we come a-calling. The PNs of the Greater Ohio Chap ter serve a vital role within the organization. The job is pivotal in ensuring lupus patients, caregiv ers, families, friends and healthcare providers across Ohio have access to appropriate services, education, support, and resources. Many of the PNs have lupus or have family members who have lupus. Some of us are healthcare workers. We all bring a variety of important and useful life-experience and workexperience to our role. Knowing about lupus and understanding the impact of living with a chronic disease helps us to connect with you, so that we can work together with you to help you live your best life with lupus. When a PN comes a-calling and asks “how are you doing?”, the PN is providing you with an opportu nity to share by listening to you. You decide what you would like to share or not share, what is going well or what is challenging for you. By listening to you, the PN begins to understand your story and then begins a conversation with you about any concerns you may have. Sometimes, just having someone who can listen, understand your story, and provide support is enough. Sometimes it is not. By lis tening to you, the PN can help you identify issues and concerns and begin to find possible solutions.
Think of the PN as a kind of gate-keeper who holds keys to the many services that the chapter provides. We can let you know the different types of services or re sources we provide and work with you to find the best fit possible. However, we do not always have immediate solutions. We then have to do some research to see if there is something available. Or, we may recommend some services or resources, but you find that these solutions are not a good fit for you or your situation. If this is the case, it is very important that you let us know. We cannot help you
Medication Information
• Physician Directory - a non-ex haustive list of physicians through out the state who treat lupus patients
and inspiring articles and new developments
6 LIVING WITH LUPUS MAGAZINE find the best solution or support, if we don’t know if something is not Whenworking.aPN
information
quarterly magazine with
•
• New Patient Education Class
• Lupusby Suzanne Tierney
• Living with Lupusinforma tive in lupus
Night Light Blog
• Transportation Assistance Pro gram - transportation assistance to and from health care appoint ments through Uber Health
and special guest authors
Lupus Foundation of America’s awareness campaign for young women of color who are
Sometimes, it is not the PN, but the patient that comes a-call ing. Caregivers, family members, friends, co-workers, and healthcare professionals call our office too. We love it when you do! Our job is to support you, our constituents. The PNs are ready and willing to assist anyone who is interested in learning more about lupus and the services and resources we have to offer. Are you interested in learn ing more? Do you have questions about lupus? Please contact us at 1 (888) NO-LUPUS, (440) 717-0183 or email us at info@lupusgreaterohio. org. We’d love to hear from you!
Magazine
• SELF - Lupus Foundation of Amer ica’s free online lupus self-manage ment program
• Patient Inquiry Packet - printed materials with information on lupus diagnosis, treatment and management and information about the Greater Ohio Chapter’s services and resources
In addition to the patient assis tance programs, we have many other resources that we offer. The following is not an exhaustive list, but does give a good overview of the information and services we provide: Aurinia All In Website - Lupus Takenot yet Greater Ohio Chapter’s Events Calendar
• Lupus Foundation of America National Resource Center on Lupus - the national organization’s up-todate resources and information on lupus
diagnosed with lupus • Caregiver Toolkit • Clinical Trials Information • Community Healthcare Worker Toolkit • Could It Be Lupus? Quiz • Could You Have Lupus Fact Sheet • Educational Programs • Financial Resources Information •
•
and
comes a-calling, we will also update you about new or existing services that we provide. For example, from January 1 - June 30, 2022 we provided patient as sistance programs for the very first time. These assistance programs were targeted to help reduce bar riers to receiving healthcare that some lupus patients may be fac ing. We are pleased to announce that these programs have been renewed and expanded. We will be offering transportation assistance, (for those who are having difficulty getting to and from their health care appointments), medical copay assistance (for those who are having difficulty with out-of-pock et medical expenses), and a mental health assistance program with Signature Health (for those who wish to be evaluated and receive mental health counseling). Keep an eye on your email for more information on these programs. Although these programs can only provide limited, short-term fund ing, they do provide some sup port and relief to those who need them. If you and the PN decide you can benefit from any of these programs, the PN will ask you to fill out an assessment form to start the process. The PN will be check ing with you during the program, to see how you are doing on the program and to get any feedback. Again, it is very important for you to communicate with us so that we can determine if the service is useful and/or make any necessary adjustments.
Medical Copay Assistance Pro gram - financial assistance with healthcare and medication copays • Mental Health Assistance Pro gram - mental health counseling
•
• Patient Toolkit
• GSK Us in Lupus Website - Lupus and support Healthcare Professional Toolkit
Control.
• Support Groups - lupus patient support groups hosted by facilita tors throughout the state
• assessment sessions through Signature Health
nephritis support community • Be Fierce.
• My Lupus Living Room - month ly podcast hosted by Suzanne Tierney for candid conversations about living with lupus
• Take Charge - Lupus Foundation of America’s free 12 week email series on managing lupus
resources and services
articles
• Lupus Foundation of America, Greater Ohio Chapter Website - provides lupus information,
When & Where: When: Saturday, September 24, 2022 Where: Hofbräuhaus Cleveland, 1550 Chester Ave, Cleveland, OH 44114 Check-In: 9:00 AM Saturday, September 24, 2022 You may also join us virtually, from anywhere! What this event is all about: All of Ohio is invited to join us to walk in downtown Cleveland or tune-in virtually on walk day to connect with the lupus community. Register today by visiting LupusGreaterOhio.org, calling the office at 1(888) NO-LUPUS, or emailing Info@LupusGreaterOhio.org. Why you should join: The walk encourages the entire lupus community to raise money for critical lupus research and support programs, increase awareness, and rally public support. This year, we celebrate a theme of uniting for the cause, because our power shines brighter together. Let your power shine by becoming a fundraiser and spotlighting the LFA, GOC’s mis sion of improving the quality of life for all people affected by lupus through programs of research, education, and advocacy. According to playhousesquare.org, when the GE Chandelier was first lit in 2014, thousands of people gathered in Cleveland at the “Dazzle the District'' celebration. The chandelier comprises 4,200 crystals that were each carefully added by hand. The crystals work together to create a breathtaking display. When lupus warriors come together, their united strength is radiant. At the 2022 Walk to End Lupus Now®, the Ohio lupus community will march past this chandelier with a combined power that will once again dazzle the district!
7LIVING WITH LUPUS MAGAZINE
The Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) invites you to our largest fundraising event of the year, the Walk to End Lupus Now®. This year, our chapter is once again calling upon lupians and their sup porters across the state to help us keep driving the mission forward. Let your power shine!
Join us for the Biggest Gathering of Ohio Lupus Warriors in Person and Online!
• 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.
The BetterHelp Program Ended May 31, 2022. We want to extend a sincere thank you to BetterHelp for their help in assisting lupus patients with mental health sup port. The program ended on May 31, 2022 and was funded by an earmark from the State of Ohio and managed by the Ohio Department of Health. We are currently seeking feedback on the program. If you participated by uti lizing BetterHelp services, please get in touch with Rita@lupusgreaterohio. org or Leslie@lupusgreaterohio.org to offer your insight.
There is no smartphone required! Pa tients without access to a smartphone or the Uber app will get notifications with ride details by text message or phone call to their landline. Tech nology should never be a barrier to Thehealthcare.UberHealth dashboard is HIP PA-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-LU PUS.
• Symptom Tracker. Users can track and make notes about their symptoms daily, so that they can recognize patterns.
Here are some new programs to ask your local patient navigator about: We have joined forces with Uber Health to provide reliable transpor tation to your doctor. It is our goal to reduce barriers to care and transporta tion is one of them.
• Medication Tracker. Users can keep track of all their medications in one place.
• Journal. Users can take notes at doc tor’s appointments, jot down questions to discuss at future appointments, or simply write about their mental and physical health.
Patient navigators are here to assist you. Dealing with a chronic illness like lupus is often over whelming 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.
Stay tuned for additional mental health support program announce ments in the near future!
8 LIVING WITH LUPUS MAGAZINE
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 symp toms, managing stress, managing medications and working with their healthcare team. You can explore this program more on our website by visit ing this page. resources/self?utmhttps://www.lupus.org/source=Chapters
KEY FEATURES OF THE PLATFORM INCLUDE:
MAGAZINE 10 9LIVING WITH LUPUS MAGAZINE
“Everyday is a new day to be ambitious for patients as we understand behind every educational effort, is an opportunity to improve the life of a patient, their family, and an entire community.
The PEL Team is comprised of healthcare professionals with more than 100 years of combined experience and a passion for patient education and advocacy.
We’re working with you to help improve each patient’s journey.
We focus on rare disorders such as systematic lupus erythematosus (SLE) and eosinophilic diseases-helping to support earlier diagnoses in patient and expand awareness.
- Angelia Drake, RN, MSN, DNP US Specialty, Director Community Engagement & Strategy
Community focused. Devoted to patients.
Provide patient education rescources and Offertoolslive or virtual education programs
- Sherrita Dorsey, RN, MSN, FNP US Specialty, Advocacy, and Patient Engagement Lead Get to know the GSK PEL Team
We are professionalshealthcareonamission.
The PEL Team at GSK is devoted to supporting patient and patient advocacy groups where that support is needed most, particularly in rare diseases and in communities especially burdened by unmet health needs.
Providing education that informs and empowers PEL Team members are available to: Deliver presentaions and exhibits
“I love that my job allows me to make an impact by helping patients become more knowledgeable and developing self-confidence in managing their disease.”
We work directly with patients to help engage them in their healthcare and build vital relationships. Our goal is to educate and motivate patient so that they are as well-prepared as possible to advocate for themselves.
10 LIVING WITH LUPUS MAGAZINE GSK Patient Learning And Community Education Hub The GSK PLACE Hub includes English and Spanish tools and rescources to help educate, activate, and empower patients: Webinars and podcasts with our PEL team, other experts and patients and Informationinsuranceon shared decision making and Videos,communicationbrochures, and resources designed with patients in mind Share the GSK PLACE Hub with your patients! Discover the... Trademarks are owned by or licensed to the GSK group of companies. @2022 GSK or APBROC220002licensor.March 2022 Produced in USA. gskPLACEhub.com Connect with your PEL Team! Reach out today. Let us know how we can help you.
INVOLVEDGET COMMUNITYTHEJOIN
MAGAZINE 11LIVING WITH LUPUS MAGAZINE Email Sign-Up Stay up-to-date on everything we’re doing by joining our mailing list. You will receive a monthly newsletter, support group reminders, Walk to End Lupus Now® updates, research news, and more. Sign up volvedlupusgreaterohio.org/get-inOne-year:Becomeget-socialgreaterohio.org/stay-informed/formsJGetdevice.updatesininformation,0800,TextNotificationsTextformedlupusgreaterohio.org/stay-innow:Message“NOLUPUS”to833-449-completeyourcontactandbesuretoopttoreceiveimportantlupusdirectlytoyourmobileSocialoinusonoursocialmediaplattostayconnected:lupusaMember$25Lifetime:$200
Host a Third-Party DoEventyouhave 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 EachAdvocacyapplication.year,theNational Lu pus Advocacy Summit brings together the lupus community to pursue a collective vision of a world without lupus. In addi tion, we help to ensure there is a cohesive voice heard in Wash ington D.C. that ensures the lupus agenda is at the forefront of the legislature. This year’s National Lupus Advocacy Sum mit was held June 26 - 28 and featured a few of our amazing Ohio advocates. Thank you to those who participated! 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 pro gramming 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 Depart ment of Health. It is imperative that we let Ohio’s leadership know the importance of keep ing lupus in the public health agenda. get-involved/advocatelupusgreaterohio.org/ Twitter.com/lupusgreaterOHFacebook.com/lupusgreaterOHInstagram.com/lupusgreaterOH
LIVING WITH LUPUS MAGAZINE12 •TraditionalTOWAYSGIVEChecks 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. • Credit Card + PayPal Fill out the online donation form or call the office. • Facebook Fundraisers • Instagram Stories In Honor of • Memorial Donation • Tribute ThroughDonationYour Job • Employer Matching Gift Program Ask your employer if they match charitable contributions made by their employees. • Combined Federal Campaign CFC #51890 •InvestingStockorOther Securities • Life Income Plans Pooled Income Fund Charitable Remainder Trusts • Creating CommunitiesHealthier CHC #9963 • United CampaignsWay •OtherAmazon 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. For more information on ways to give, please visit contacthio.org/get-involved/donatelupusgreateroortheoffice.
We Live with Lupus Support Group: Pearls of Wisdom... Support Groups are a perfect place to learn from other lupus patients. During our meetings, we often share “pearls of wisdom” with one another. Pearls of wisdom are wise sayings or pieces of advice. The We Live with Lupus Support Group has offered some pearls of wisdom to help other lupus patients.
MAGAZINE 14LIVING WITH LUPUS MAGAZINE
From: Lindsay-SmithNatalie
“Learn to become your own advocate. Don’t be afraid to ask questions or question your doctors. Hold them accountable. You’re a person not a number. Increase your knowledge by doing the research and staying ahead. Having support is great, but being able To advocate for yourself is the power to make real changes in yourFrom:healthcare.”Natalie
Sometimes, as lupus patients, we may feel guilty if we intentionally rest and practice self-care when we feel we could be doing something else (working, cleaning, etc.). When I have those moments, a quote by Winnie the Pooh comes to mind: "Sometimes, doing nothing is the very best something you can do."
BridgetteFrom:Wilson,MS,CHES
From: Adrienne
Healthy habits are key to managing my lupus. I exercise, I’m a vegan, and I don’t smoke or drink alco hol. These healthy habits help keep my lupus in-check. When I start pushing myself too much or start eating junk or skipping workouts, I suffer. So, I aim to keep things balanced and my body healthy at all times.
14 LIVING WITH LUPUS MAGAZINE “Keep your face to the sunshine and you cannot see a shadow.”
...
From: Dorothy I think I’d tell a person who was newly diagnosed that it’s not a death sentence. When I was diagnosed in 1996, my first thought was “I’m going to die.” But you can live well with lupus. It’s possible. Also, rest when your body tells you to.
From: Cat
— Helen Keller Stress is the worst possible thing for lupus. The thing that has helped me tremendously would be starting a relationship with God. Being able to give my problems, worries, and fears to God is a great stress reliever on this wild lupus journey. Laughter would be the second - being able to laugh when you want to cry. Find the joy in everything and spread it to others. You're not alone!
Know that you are not alone. Don’t reinvent the wheel. Join a support group. Talk to others that may have had the same or similar challenges. Always be honest with yourself and most of all your doctor. Use the available resources. Things are really good for newly diagnosed patients.
Pearls of Wisdom
"Don't put a period where God has put a comma." And, remember the Serenity Prayer: "God, grant me the Serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the From:difference."Mike
Don'tAllisonletlupus stop you from living. Make "living with lupus" look good!!! Education and hope will help you get to a rewarding life. Never give up!!! From: Renee
Show yourself grace. You WILL get overwhelmed, so take one tiny step at a time and give yourself time to learn, to heal, to process. You don’t have to tackle everything at once. Celebrate all the victories, and use everything else as a step towards the next goal. From:
15LIVING WITH LUPUS MAGAZINE
Don't be afraid of getting a second opinion when it comes to your From:health.Tisa
Pearls of Wisdom
...
16 LIVING WITH LUPUS MAGAZINE
Thebest.campaign website, befierce
takecontrol.org, houses a number of resources to help women take control of their health:
The American College of Rheuma tology (ACR) and the Lupus Foun dation 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 Con trol.TM campaign to raise awareness of lupus, its symptoms, and how to take the next step if they are expe riencing 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
• 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
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.
Be Fierce. Take Control. to Raise Awareness of Lupus.
• Guide for preparing for a health care 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 informa tion 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 #BeFierce TakeControl on social media. By sharing, you are becoming a vital partner in driving further aware ness about this mysterious disease to those who need it befiercetakecontrol.org/esorg/?utmhttps://befiercetakecontrol.most.source=Chapters
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 inflam mation 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.
17LIVING WITH LUPUS MAGAZINE With Take Charge you’ll gain knowledge and skills that can help you: • Explain to others how lupus affects you • Find and ask for the support you need • Identify and track your lupus symptoms • Stick with your treatment plan • Make the most of your doctor appointments • Cope with lupus and its day-to-day challenges 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. Subscribe Lupus.org/TakeCharge “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’.” 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. https://www.lupus.org/resources/take-charge?utm source=Chapters
18 LIVING WITH LUPUS MAGAZINE HOW Stressed ARE YOU? By Leslie Vizcarra-Tierney Vice President of Operations & Patient Navigator Quiz Yourself : How Stressed are You? In the last month, how often… 1. Do you feel upset because of something unexpected? 2. Do you feel unable to control the important things in your life? 3. Do you feel nervous or stressed? 4. Do you feel angry because things happened that you couldn’t control? 5. Do you feel you had many troubles that you could not overcome? 6. Do you find yourself unable to cope with your responsibilities? Scoring for questions seven through ten: 4=N ever, 3=A lmost never, 2=S ometimes, 1=Fairly O ften , 4=Very Often 7. Do you feel confident that you can handle your personal problems? 8. Do you feel that things are going your way? 9. Do you feel you are able to control irritations in your life? 10. Do you feel you are on top of things? Add your points. A score of 13 is considered average; scores of 20 or higher are considered high stress. Scoring for questions one through six: 0=Never, 1=Almost never, 2=Sometimes, 3=Fairly Often , 4=Very Often
Working through life’s pressures can result in something beautiful. How do you decipher between good and bad stress? What is pres sure? What do you do under pres sure? How do you best cope with stress? These are all great ques tions to help you understand your coping skills. Let’s explore answers to these questions by discovering strategies to manage pressure. Strive to Survive Under DoPressureyoufeel you have so much to do that you don’t know where to start? Maybe you have overwhelm ing feelings of other people’s expectations. You feel that other people are disappointed with the progress you have made. When you’re under pressure, it’s way too easy to feel like this. Pressure is part of everyday life.
Under Pressure or Stress
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Finding a way to manage pressure can result in something precious and wonderful and prevent a downward spiral into feelings of helplessness and hopelessness. In addition to managing pressure, working on balance can help you achieve your goals. Under the right amount of pressure, diamonds form! Even one irritating grain of sand can turn into a precious pearl. Let’s discover together how to control pressure and use it to your benefit. The trick is to make sure you are working with yourself and not against yourself. Finding balance is the key to success. What is Pressure? There are two types of pressure; internal and external. Internal pressure comes from yourself. Setting goals and push ing yourself to reach and strive for your idea of “perfection.” Some times these goals are unrealistic. Internal pressure can also come from trying to meet other peoples’ expectations. You might push yourself too hard to meet career/ life goals. Or, you assign feelings of doubt that interfere in achieving your Externalgoals.pressures come from an outside influence or from other people. Like family members or co-workers who micromanage, making you perform in a specific way. They give you certain expec tations or a heavy workload that surpasses your ability to handle. These external pressures may have little connection with your work, but the way you react to them can negatively impact your abil ity to perform. A long commute, illness, financial struggles, family obligations, or a death or loss in the family can all weigh heavily on you. Launching you into a period of unmanageable chaos and stress. You may start to feel like these pressures build up and act against
Too Much Pressure You need to be careful not to confuse pressure with stress. They are different. Pressure can be a positive motivator. Pressure can be used to your benefit to work hard and meet your goals. Increasing pressure and learning to juggle multiple priorities can help tip the balance in the direction of success. However, pressure can also be
20 LIVING WITH LUPUS MAGAZINE you changing your normal behav ior and finding unhealthy ways to cope like overeating, excessive alcohol, or use of drugs. These cop ing mechanisms are harmful and not true coping skills.
• Maintain a healthy diet.
• Routine regular exercise.
• Get plenty of sleep. These common sense recommen dations for self-care will start you on the path to responding appro priately to pressure. Responding appropriately to pressure will help to manage the negative impact negative and will first appear with dissatisfaction or a minor deterio ration in the quality of your work. When the pressure becomes too much it turns into stress and anx iety leading to feelings of unhap
Discover Techniques to Manage Pressure Learning techniques to cope with pressure will be your most valu able skill to learn. The first step is to practice simple basic self-care practices.
Ifpiness.thesituation doesn’t improve, and the pressure continues, you run the risk of burning out. The repeated negative pressure can turn into physical symptoms lead ing to a lupus flare. Some people even develop emotional issues like depression or behavioral problems like aggressiveness when they are under an excessive amount of pressure.
• Consume only moderate amounts of alcohol, if at all.
21LIVING WITH LUPUS MAGAZINE you might face. Here are additional helpful techniques to help you discover how to manage pressure.
• Get Organized: Take control of what you can right away. Clear away physical clutter and emotion al baggage This will enable you to directly see when the pressure starts to build. When you have too much clutter it can distract from the actual situation that needs to be addressed.
• Address Your Weak Spot: Consid er how your self-confidence and personality may interfere with your response. Look to influence how much pressure you feel by having a better understanding of yourself. Addressing your “weak spots” and using that to balance your reac tion can help you to optimize your performance.
• Proactive Approach: To use pressure as a positive approach you need to be in command of the situation through your attitude and actions. When you lose your sense of control you can quickly feel anxious and disturbed in the situation. By staying on top and believing in your own success you are building internal self-control to manage your ability to appro priately deal with rising pressure. Work on building an internal com pass to guide you during times of stress.
place a positive outlook and de velop a way to defuse a negative situation. Use your motivation to succeed as a technique to restruc ture negative situations.
• Change Your Response: Create a positive mindset. When you respond to pressured situations,
• Take Control: Work on self-con trol. Emotions can run high when we have many responsibilities. It is important to develop your ability to cope in these situations and manage responsibilities. Know that you have the ability to work past a confrontation or difference in others’ opinions.
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• Create your own Synergy: Read this next sentence out loud to yourself ten times. “You are impor tant, unique, special, and one of a kind.” Remember there is no one else like you. You need to believe in yourself and live in that kind of positive energy. Without this positive self-belief, your energy to ward yourself can flatten. You can easily fall into a rhythm that is not vibrant with positive energy. Creat ing your own positive synergy will allow you to energize yourself to gain focus and clarity on what you feel is best for you.
• Believe in Yourself: Pressure can come straight from your own selfdoubt. Be your number one sup porter. Appreciate your attributes and work on believing in yourself. If you don’t believe in yourself first, how can you expect anyone else to believe in you too?
• Know When to Ask for Help: Do you know who you can reach out to for help? Never be afraid to ask for help or look for guidance. Espe cially when you are already feeling the negative effects of pressure and stress. Recognize where the pressure is coming from. Ask your support network who is appropri ate to ask for advice. You also have the Lupus Foundation of Ameri ca, Greater Ohio Chapter patient navigator team to help answer your questions. Our office can help connect you with a patient naviga tor to talk to and help find answers to some of your questions. Contact the office by email at Info@Lu pusGreaterOhio.org or call 1 (888) NO-LUPUS.
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All of the above definitions were associated with less organ or tissue damage, and the longer the individual remained in a state of remission or LDA, the lower the probability of damage accrual was. These disease activity states were also associated with a lower prob ability of lupus flares and hospital Lupusizations.affects everyone different ly, which means treatment goals need to be tailored to each individ ual. Talk to your doctor about your treatment plan and learn more about lupus remission.
RESEARCH AND NEWS
• Low Disease Activity: a cSLE DAI-2k score less than or equal to two, without prednisone or immu nosuppressants
A new study demonstrates the im portance of striving for remission or low disease activity (LDA) in lu pus. Researchers assessed multiple definitions of remission and LDA and found each was associated with less organ or tissue damage. This study included 1,652 patients from the Systemic Lupus Interna tional Collaborating Clinics (SLICC) cohort, which is a multinational, multiethnic cohort with people recently diagnosed with lupus across Asia, Europe and North FourAmerica.distinct definitions of remis sion and LDA were assessed:
• Remission Off-Treatment: a clini cal Systemic Lupus Erythematosus Disease Activity Index (cSLEDAI-2k) score of zero, without prednisone or immunosuppressants (immuno suppressive medications)
• Modified Lupus Low Disease Ac tivity (mLLDAS): a SLEDAI-2k score less than or equal to four, with no activity in major organ systems, no new disease activity, while taking 7.5mg or less of prednisone and/or immunosuppressants
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Multiple Definitions of Lupus Remission and Low Disease Activity Linked to Less Damage
• Remission On-Treatment: a cSLEDAI-2k score of zero, while taking 5mg or less of prednisone or immunosuppressants
Population-Based Research Study Shows Increase In Lupus Disease Rates
New research shows the incidence and prevalence of lupus, classi fied using EULAR/ACR criteria, in Olmsted County, Minnesota has in creased over the last four decades. Incidence of lupus was higher in certain racial and ethnic groups, and occurrence of the disease increased rapidly in the general population. Both prevalence and incidence rates can reveal impor tant trends in disease occurrence. While prevalence includes all cases, both new and preexisting, in the population at a specific time, incidence is limited to new cases Lupusonly.
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Midwest Network research ers used the population-based study to examine incidence, prevalence, and mortality trends of lupus over four decades (19762018) in Olmsted County, Minne sota. Over a period of 43 years, incidence of lupus increased 2% per year in men and women and across various age groups. Over a 60% increase in lupus incidence was observed in women, and a sixfold increase was seen in men (from 0.55 lupus cases to 3.18 lupus cases per 100,000 people). Lupus incidence was higher in racial and ethnic minorities than in non-Hispanic white people. An increase in lupus prevalence was also noted per 100,000 peo ple (from 30.65 in 1985 to 97.4 in 2015). The researchers found no evidence that the severity of lupus has changed over time. Rising rates of lupus, which dis proportionately impacts people of color, may at least be partially explained by the increasing ethnic and racial diversity of the US pop ulation. According to U.S. Census data, the population of non-His panic white people continues to decrease from 63.7% to 57.8% in 2020. Learn more about risk factors for developing lupus.
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The results of this study do not mean that the COVID-19 vaccine is no longer effective for people with lupus. But it does highlight that as the virus changes, further research is needed to examine vaccine effi cacy in people with autoimmune diseases. Talk to your healthcare provider about COVID-19 vacci nation and/or booster shots and about whether you should contin ue to take other precautions, such as wearing a mask. Learn more about the COVID-19 vaccine and lupus.
Study Finds mRNA COVID-19 Vaccine and One Booster Dose May Not Fully Protect against Breakthrough Case of Omicron Variant in People with Autoimmune Disease
In people with autoimmune rheumatic diseases (ARDs), such as lupus, the mRNA COVID-19 vaccine and booster dose may not provide broad protection from develop ing a breakthrough infection (an infection with a virus after you have been vaccinated) of the Omicron variant. A new study finds the mRNA vaccine does not create sufficient antibodies to neutral ize a response to (or fully protect against) Omicron. The blood samples of 94 healthy healthcare workers and 149 people with ARDs, including lupus, were collected. Researchers examined the blood response to Omicron at 15 weeks after a second mRNA COVID-19 vaccine dose or 8 weeks after receiving a third mRNA dose or Peoplebooster.with ARDs exhibited lower response or protection after the second dose to Omicron (11.5%) than the healthy healthcare work ers (18.1%). After the third dose, a significant difference in response was observed – 26.8% in people with ARDs versus 50.3% in the healthy group. Within six weeks, significantly lower Omicron-neu tralizing responses were observed in the ARDs group compared to the healthcare workers.
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MyBLOGLFA,GOC&PODCASTLupusLivingRoomnowhasvideo!Wearesoexcited for you to, not only hear, but to see what happens in our lupus living Episoderoom!15- Meet Amy!
Episode 16- Meet Mackenna!
On this Episode of My Lupus Living Room, Suzanne sits down with Mackenna Willis, a new addition to our LFA, GOC team! Mackenna is our wonderful new graphic designer who has quite a story herself. Mackenna tells us about her battle with brain cancer; the highs, the lows, and all of the things she has learned along the way. We are happy to say that she has been in remission for a while! We think you are really going to like this episode! Watch the full podcast on our Youtube Channel.
On this episode, Suzanne talks to Amy Filbert. Amy is the newest ad dition the the LFA, GOC team, as well as a patient! Amy talks about her lupus diagnosis journey and about her experience with the LFA, GOC. We hope you enjoy this episode!
Have you developed irritation or dryness in your eyes or mouth for more than a few weeks?
Muscles and Joints
Have you had stiff, tender, and swollen joints that feel worse in the morning?
Brain and Nervous System
Have you had a seizure or convulsion?
Have you had redness or rash across your nose and cheeks in the shape of a Havebutterfly?youhad sores on your skin that would not heal? Have you had sudden, unexplained hair loss?
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 been told you have anemia, low white cell count, or low platelet count?
Skin Has your skin broken out after being in the sun, but it’s not a sunburn?
Have you had unexplained weight loss or abdominal pain or tenderness when your belly is touched?
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Have your fingers and/or toes become pale or red or blue, or felt numb or painful? Have you had a stroke or heart attack? Have you had blood clotting problems or a miscarriage?
Stomach and Intestines
Have you had sores in your mouth or nose that lasted more than five days?
Heart and Lungs Have you felt chest pain while taking deep breaths? Kidneys
Have you had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep?
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.
Could You Have Lupus?
Have you been told you have protein in your Haveurine?youhad swelling in your legs and ankles on both sides at the same time?
Eyes, Nose, and Mouth
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. 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. Please turn over this page for more information.
Blood and Circulatory System
29LIVING WITH LUPUS MAGAZINE Lupus Foundation of America | 2000 L Street NW, Suite 410 Washington, DC 20036 | 800.558.0121 202.349.1155 | www.lupus.org | © 2013 Rev The Lupus Foundation of America is the only national force devoted to solving the mystery of lupus, one of the world’s cruelest 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. Let's Talk About It Webinar Series Living with Lupus Magazine Lupus Night Light Blog My Lupus Living Room Podcast Patient Navigator Program Educational Summits & Classes Support Groups Local State Advocacy Use this QR code to access program & educational resources. Lupus Foundation of America Greater Ohio Chapter 12930 Chippewa Rd, Brecksville, OH 44141 | 1 (888) NO-LUPUS (440) 717-0183 | LupusGreaterOhio.org | © 2013 Greater Ohio Chapter Programs Available:
Suzanne Tierney, CEO/President Suzanne@lupusgreaterohio.org
Mackenna Willis Marketing Manager & Graphic Designer Mackenna@lupusgreaterohio.org
With a lifelong passion for service, I found the Nonprofit Administra tion 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 Foun dation, I am so happy to be back working on this mission. I can’t wait to connect with fellow sup porters in the fight to end lupus, and I hope to see you at the next gathering of lupus warriors.
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 educa tion. I strive to build working relation ships, 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.
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 man agement to marketing efforts to event help.
Victoria Hornikel Event Coordinator Victoria@lupusgreaterohio.org
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.
I’m the marketing manager and creative developer when it comes to strategizing new ideas for Lupus awareness. As a grad uate 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.
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.
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! 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 com munications and a minor in public relations.
Aletha Acree Community Outreach Coordinator Aletha@lupusgreaterohio.org
Leslie Vizcarra Vice President of Operations & Patient Navigator Leslie@lupusgreaterohio.org
Twitter.com/lupusgreaterOHFacebook.com/lupusgreaterOHInstagram.com/lupusgreaterOHGet in Touch: Lupus Foundation of America, Greater Ohio Chapter 12930 Chippewa Road, Brecksville, OH 44141 (440) 717 - 0183 1 (888) NO - LUPUS 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.