Living With Lupus Issue 4 by lupusgreaterohio

Living With Lupus ISSUE 4

Suzanne Like many of you, I am frustrated and disappointed that Covid is still raging across our country [and the world]. I honestly did not see this coming. I doubt that any of us did. I don’t believe there is one person who can say their life was not impacted by the pandemic. Undoubtedly, we will all have stories to share in the future. Some stories will turn out ok and others will be tragic. Start journaling, you might come up with a best seller for tomorrow. Here at the Foundation our mission has stayed the course. We are dedicated to improving the quality of life for all people affected by lupus through programs of research, education, and advocacy. We stay true and committed and won’t waver from our purpose. I want to give a huge shout out to the chapter’s staff, board, and volunteers that are so committed during these unprecedented times. Great strides have been made in navigating through this storm of uncertainties. We have made tremendous progress and pivoted on how we deliver programs, services, and resources to those in need. Recently, we have added a digital Living with Lupus magazine, a new podcast, a blog, and a new website! Until we have clearance to do in-person meetings, most of our regular education programs and support groups are meeting digitally or telephonically. We have become tech gurus! This in itself is a miracle; remember I am in my late 60’s. Who said you are never too old to learn? We have left no stone unturned in the digital world. You can connect with us via Facebook, Twitter, Instagram, and LinkedIn. And you can watch many of our digital programs via our YouTube channel. Our lupus community has not been forgotten during the pandemic. Actually, we have made some really great efforts and they’re long overdue. GSK, the first pharmaceutical company to get a drug approved specifically for lupus in decades (Benlysta) has now been approved for the treatment of Lupus Nephritis. Right behind them came Aurinia Pharmaceuticals, makers of Lupkynis™, the first FDA-approved oral therapy for lupus nephritis. And rounding out the exciting drug development news is AstraZeneca whose lupus medication, anifrolumab, is in late-stage trials. More to come! I honestly did not think I would live long enough to see this happen. These medications offer so much hope to many of us that have lupus. All of the pharmaceutical companies above will be partnering with this chapter as they introduce their medications to the world and offer education and resources. We are grateful to form so many partnerships. Remember this is a result of so many advocacy initiatives that many of you have been a part of. Change does not happen by itself. You do make a difference and you have been heard. We look forward to continuing our robust advocacy initiative this year and pray that you will continue to be a vital part of it. It gives me great pleasure to share with you the launch of our new website. In the past we shared our site, and it was hosted by the National Lupus Foundation of America, Inc. in Washington DC. Since the digital world is taking us by storm, we have embarked on our own site that will be specific to Ohio. Of course, you will still have access to the National site which will continue to bring us together on the bigger picture of finding the cause and the cure for lupus. So, while we wait, the Ohio website will walk you though the many programs and resources that Ohio has to offer you. We hope you enjoy it and that the resources help navigate you in your journey with lupus and ultimately hope it will assist you in having a better quality of life until lupus is eradicated.

There is so much going on at the Chapter, but also in the month of February, which I love. February is about love, romance, and wonderful beginnings. So, you would will not be surprised that I got married on Valentine’s Day. What better month than February to talk about love, romance, and dating. This includes learning to love yourself! I love to hear stories from all of our lupus community. It often takes some nudging by me to get many of you to talk and to share about your life while living with lupus. Perhaps you read the last issue. We shared stories of married couples that have learned to champion living with a chronic disease like lupus. I hope you found their stories uplifting and inspiring. I know I did. I do want to give a huge thank you to all of our wonderful couples. In this issue, we are presenting stories from some of our friends across Ohio who are single or dating while living with lupus. They are super stars to me, and I am excited that they have stepped up to share their stories, issues, and concerns about dating. This is always an engaging topic. I had tons of interview candidates that were willing to share but they wanted to remain anonymous. This is a private and sensitive topic and I am grateful to those who were brave enough to share their stories. I cannot pretend to know what it is like to be single, divorced, or widowed while living with lupus. Sadly, I have been sick since I was 9 years old. The good news is I went to school with my husband Bill, who is nicknamed “Honey Bunny” since the third grade. It has been a life sentence [ha ha]. He has stood by my side during this roller coaster called life for over 50 years now. There have been some bad times but mostly great times. This is the first time I cannot share an experience with you. I have never been single. But one thing is certain, we need to talk more about being single. This is just the start. Let us see where this takes us. I am always eager to hear stories from my fellow lupians. It is my hope that we learn from each person’s story. So many of you have faced insurmountable challenges and risen to the occasion. Remember this: Lupus does not have to be a lonely, miserable and misunderstood journey. There is no I in the word lupus but there is an US!

Suzanne Tierney President & CEO Lupus Foundation of America, Greater Ohio Chapter

CONTENTS

Pg. 1-2 Letter from Suzanne Pg. 4 Patient Navigators

COVID & OTHER NEWS

Pg. 5-12 Patient Stories Pg. 13-14 Get Involved Pg. 15-19 Self Love Article & Quiz Pg. 20-21 Virtual Summit Recap Pg. 22-23 Membership Pg. 24-25 Covid & Other News

Pg. 28-30 Advocacy

ADVOCACY

Pg. 31 Staff Page

20 VIRTUAL SUMMIT RECAP

QUIZ

SELF-LOVE ARTICLE &

Pg. 26-27 Blog & Podcast

Local Patient Navigators are Available to You President & CEO

Suzanne@LupusGreaterOhio.org Vice President & Registered Nurse Leslie@LupusGreaterOhio.org Greater Cleveland Community Outreach Coordinator, Aletha@LupusGreaterOhio.org Northeast Ohio NEOH@LupusGreaterOhio.org Eastern Ohio EasternOH@LupusGreaterOhio.org Western Ohio WesternOH@LupusGreaterOhio.org Central Ohio Columbus@LupusGreaterOhio.org Kettering@LupusGreaterOhio.org

What is a Patient Navigator? A patient navigator is a trained individual who serves as a local go-to person for support in your lupus journey. They can help you find resources and navigate the challenges of living with lupus. Our patient navigators are hard at work compiling lists of resources in their respective territories. Stay tuned for our brand new website and updated patient toolkit! Due to the COVID-19 pandemic, our support groups have gone digital. For the most up-to-date program schedule, please visit: LupusGreaterOhio.org.

Southwest Ohio Cincinnati@LupusGreaterOhio.org LIVING WITH LUPUS MAGAZINE

PAT I E N T

STORIES

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I was single for six years. It’s been tough. I’ve been dumped because of lupus, told I was too ugly, that I should settle, and that they didn’t want to risk giving it to their children. People even told me that I was selfish for wanting love and should only focus on health. Or that I must be faking if I felt well enough to consider dating. Honestly, I had given up hope on real love finding me. However, being single with lupus taught me that I’m worth it. That I have a lot of love to give. That I’m still beautiful and amazing. I feel it’s important to enjoy being single, and single people should live their best life. You don’t have to wait for a mate to live and pursue your goals. There is so much you can do and experience while single. And it gives you lots of time to focus on what brings you joy!

JASMINE DOAKES

I started getting sick during my first semester away at college. At first, they said I had staph and MRSA, but by January of the winter term, they believed I had lupus. I had a pretty difficult time in the beginning. I wasn’t sure what I did wrong to cause lupus. I had all of these hopes and dreams. The same year I was diagnosed with lupus, my mother passed away. I kind of went into a depression since my body and life had drastically changed. I was in a lot of pain every single day. I would go to sleep with clear skin and wake up with a crazy rash on a different part of my body. I gained over 100 pounds. There were days I couldn’t walk or even do simple things. But I didn’t want to give up, so I’ve tried a holistic approach, changed my diet, started working out, and so much more with very little change, honestly. I still have lupus, but I’ve made up in my mind that it does not have me. I will live and love the best I can.

I also learned that it would take a special person to love me beyond these scars. And once I found them, I knew I couldn’t let them go or forget how valuable they are. My faith, my family, church, and friends are all my support system. My aunt and sister are both in the medical field, so having that knowledge-based support has been great.

“You don’t have to wait for a mate to live and pursue your goals. There is so much you can do and experience while single.” MAGALIVING WITH LUPUS MAGAZINE ZINE

I have a phenomenal church family that checks on me and helps in any way possible. I’ve got amazing mentors and wonderful friends that bring a level of wisdom, balance, and laughter. Then anytime I want to give up, I just think about my nieces and nephews. They have my heart. They keep me going. When I’m looking for supportive people in my life, romantic or not, I look for empathy, patience, and a heart that forgives. I found all of that in the people and community closest to me, and now, in my fiancé. On Christmas, I got engaged to a man that is everything I’ve ever prayed for—down to the small details of his family. He’s attentive, patient, and passionate about getting me well! Honestly, a year ago, I had given up on love. I thought maybe I was just supposed to be the single auntie. I certainly didn’t think that God would even remember my childhood prayers, but he’s so kind that he knows exactly what we need and when we need it. My love story is a little unconventional. I want to encourage anyone who desires love not to give up hope, don’t settle for less, and keep living each day to the fullest until that one comes. You’re worthy of everything you’ve ever dreamed of. Live your absolute best life, and enjoy singleness. You deserve the best!

“ I want to encourage anyone who desires love not to give up hope, don’t settle for less, and keep living each day to the fullest until that one comes...” 7

LIVING WITH LUPUS MAGAZINE

MARY KAMINSKI I was a fun, active kid, playing sports like soccer and basketball. Then I went into middle school in 2005. 6th grade is when things started going downhill. One evening in Strongsville Metroparks, I was riding my bike with my father when I started not to feel so good. I started feeling achy and tired, so I went home and took a nice bath, thinking that might help. That didn’t help. I laid in bed, and when my mom took my temperature, it was 102.1°. They ended up taking me to University Hospitals Rainbow Babies & Children’s. I was adopted, so I have no family history. I was in the hospital for a couple of weeks with IVs, chemotherapy, radiation, Cytoxan treatments, and breathing treatments. After being in the hospital for at least two months, my rheu-

ma-tologist diagnosed me with SLE lupus. I was put on steroids. I believe I was on 100 mg, and then once I was getting better, the dosage decreased. I was 99 pounds when I entered the hospital. I gained so much weight from the steroids, I had Cytoxan treatments and couldn’t drink or eat anything for a couple of hours after that. Once my blood work showed I was improving, I was able to go home. Once a month, I would have to go downtown for my treatments, then it became fewer trips downtown. I was eventually in remission around 2009 or 2010. I can say that I’m down to 5 mg of prednisone. Lupus isn’t the only disorder I have. I have hypothyroidism, Hashimoto’s disease, mannose-binding lectin deficiency, depression, and anxiety. I could go on and on with all my medical history. I also have epilepsy, and my

last seizure was in May of 2009. I have been seizure-free since 2009. I take a bunch of medications to keep me healthy. seizure-free since 2009. I take a bunch of medications to keep me healthy. In middle school and high school, I didn’t date. I thought I was too fat, not pretty enough, and that no one would want to date me. In 2013, I started dating a guy who was a little bit older than me. Everything was going okay, but on September 10, 2016, my boyfriend and his son were in a deadly car accident. After that, I became very sick and wasn’t able to eat. I lost weight. But eventually, I put it back on. I was single for about three and a half years. Single was okay, but then it got lonely, and then I ended up always

MAGALIVING WITH LUPUS MAGAZINE ZINE

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being the third wheel. But over Valentine’s Day weekend last year, I met a nice guy. I was so nervous because I wanted to be in a rela-tionship. I told him about my health issues and said, “I understand if you don’t want to be with me.” He said, “I’m not going anywhere.” We have been together since February 15, 2020. Ugh... I love being in a relationship. I’m happy. I’m loved, and he cares for me. My boyfriend treats me great. I can’t wait to see what happens down the road. Dating with a chronic illness has taught me that you never know what a person is going through. Be patient. It’s so important to have supportive friends and family, those people who will help you when you are down in a deep depression. My support system includes my doctors, therapist, parents, sister, and boyfriend. Here’s my advice to anyone with lupus who is single: don’t give up. I thought I was going to be single for the rest of my life. Be positive. I am proud to say I am a Lupus Warrior. There are days where I am great and energized, and there are days where I just don’t want to do anything. Sometimes it’s alright to have an off day. It’s okay to ask for help. I push through it a lot of the time. When people say, “you don’t look sick,” they don’t know my reality: lupus fog, memory problems, confusion, depression, joint pain, butterfly rash, tiredness, and more. Even with lupus, I can do a lot of things. I am strong. I work two jobs, working with infants and toddlers and another as a

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fitness/custodian cleaner. I can play sports, do activities, and of course, find love. There are some days when I am drained.

But that’s okay. I just try again the next day. Lupus doesn’t have me.

“Here’s my advice to anyone with lupus who is single: don’t give up. I thought I was going to be single for the rest of my life. Be positive. I am proud to say I am a lupus warrior...”

BAILEY

BRIT TNEY I was diagnosed with lupus when I was 16 years old after a few years of symptoms. I’ve also been diagnosed with IST, POTS, MCTD, Sjögren’s, myositis, vasculitis, Raynaud’s, fibromyalgia, hypothyroidism, and interstitial lung disease. I’ve been single for a few years now. I was casually dating someone most of that time. Due to the pandemic, I have not dated at all this past year. I’ve had men who wanted to make plans, but I haven’t been comfortable going out or having company at my house because I’m on immunosuppressants. I feel like lupus has definitely impacted my dating life. I’ve had several men stop talking with me once I start to seem

flakey. My time outside of work is precious resting time when I’m flaring, and going out just isn’t worth it. It’s been hard to keep dates and remain in touch with new people during flares. Through all of this, I’ve learned to put myself first. You can’t waste time on people who don’t try to understand or make room for your illness. I’ve learned I’m more than capable of taking care of myself and have learned when to ask family or friends for help. I need people who are 1. Understanding 2. Honest 3. Reliable. When I’m sick, I need people in my life who understand what I’m going through or at least do their best to understand. I need people to be honest with me

because it’s just so important. Being able to trust someone relies so much on honesty. I also need reliability. It’s hard when my body and so many aspects of my life are not reliable. It’s really reassuring to have someone I know will be there when I need them. You don’t need a significant other to get through this. I have my family. I have some lupus friends I keep close even though they live far away. I also have some pretty great neighbors who have helped me a lot, especially this year when we’ve all been pretty secluded. Find people who will be there for you, and who knows, one of those people might end up being a romantic partner! Not everyone is going to get what we deal with or try to put in an effort to understand. Don’t settle for someone like that. We deserve the absolute best, and the right person is out there somewhere.

MAGALIVING WITH LUPUS MAGAZINE ZINE

I think lupus has affected my dating life because it’s so unpredictable. Not knowing how I’m going to feel from one day to the next makes it complicated. People don’t really want to give you a chance if you constantly have to cancel or reschedule your plans. I try to be upfront about my condition, so people know what they are dealing with. I have been single for 13 years now. I’m not currently dating, especially since we’re in a pandemic. I always have good intentions to start dating but never seem to take the last step to start. I definitely need help making the plunge to get back out there. It’s hard to meet people when you are too tired to go out. Also, I’m very cautious about online dating because you never know if it’s going to be sketchy. It would be easier to meet people in a group setting or by being introduced to someone.

AMANDA

KEPIC I was diagnosed with lupus at 16 years old after being sick for a few years. I have had many ups and downs throughout the years, with new diagnoses being added along the way.

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A big challenge for me is my self-esteem. Since gaining a lot of weight from steroids and meds, I am very self-conscious over it. Especially because people think you are just lazy and do nothing but eat junk food all day, which is hardly the truth. I also feel like guys aren’t going to want to date someone who doesn’t work because they

“I think lupus has affected my dating life because it’s so unpredictable...”

don’t want to provide for someone else. And again, they think you are lazy for not working. I have sometimes thought it would be better for me not to date because why put that pressure on someone else? It’s enough to deal with it as a patient. Why would someone volunteer to be a part of that life? Although there are challenges, being single has taught me not to settle. I may be single, and I may be single forever, but I’ll never settle for someone who disrespects or treats me badly just so I can say I’m with someone.

canceling plans, and losing my job because it became too much on my body to handle. I’m still trying to find the life les-

sons from all of this. But I know it didn’t break me, and I’m still fighting another day.

“Although there are challenges, being single has taught me not to settle...”

My concern is that some people won’t take the time to educate themselves on this disease to see how serious it really is. To be partnered with someone who has a serious illness, I feel like you need to be very understanding and adaptive. I look for kind, caring people who are empathetic to others. I want someone who will make me laugh. And they must love dogs! I don’t mind single life because I don’t have to answer to anyone. I don’t have to check in with someone and let them know what I’m doing. I’m free to do as I please. Don’t let it get you down. You are enough. Independence does not have to mean you’re in it alone. My mom keeps me going along with a very few close friends. I don’t know where I’d be without my mom. I have had a lot of loss from lupus—having to quit school because I became super ill, losing friends because I was constantly MAGALIVING WITH LUPUS MAGAZINE ZINE

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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 R updates, research news, and more. Sign up now: LupusGreaterOhio.org

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.

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GET INVOLVED

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If you are interested in hosting a third-party event, reach out to us for our official guidelines. Then, submit your application and wait to be contacted by an LFA, GOC staff member.

Join the 2021 Digital Lupus Advocacy Summit From March 2-4, 2021, join thousands of your fellow lupus advocates to make an enormous difference in the fight against lupus. There is no deadline to register for the first two days of the virtual summit – you can register at any time up until the day of the event. During March 2-3, you’ll hear from the leading lupus researchers about the latest breakthroughs, as well as interact with experts in the field about lupus advocacy, care, and support. Registration is now open! Become an advocate: LupusGreaterOhio.org

WAYS TO GIVE Traditional

Through Your Job

• 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.

• Employer Matching Gift Program Ask your employer if they match charitable contributions made by their employees.

• Credit Card + PayPal Fill out the online donation form or call the office.

• Combined Federal Campaign CFC #51890

Other • 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. For more information on ways to give, please visit lupus.org/ohio/ ways-to-donate or contact the office.

• Community Health Charities CHC #9963

• Facebook Fundraisers • Instagram Stories

• United Way Campaigns

In Honor of

Investing

• Memorial Donation • Tribute Donation

• Stock or Other Securities • Life Income Plans Pooled Income Fund Charitable Remainder Trusts

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WHAT IS IT & DO YOU NEED MORE?

It is fairly easy to gauge how much you love a partner, friend, or family member. You recognize the feelings of elation, deep emotion, loyalty, and camaraderie that accompany the love of another individual. You effortlessly acknowledge loving feelings towards someone else. As easy as it is to recognize how much we love others, we often have difficulty loving ourselves. How do you know if you love yourself? Have you ever measured the amount of self-love you have? Do your actions and the boundaries you set support the love and respect you have for your own person? Let’s take a moment and explore what self-love is and ways to practice and encourage it. Self-love is the unconditional love and respect you have for yourself. When you have selflove, you have high regard for your happiness and taking care of yourself. Honoring self-love is a conscious decision to use love in everyday responsibilities, like work, in relationships, your health, and in your home. A sign of self-love is the ability to share your thoughts and opinions and the value you

LIVING WITH LUPUS MAGAZINE

place on your own ideas. Another important indicator of self-love is the ability to self-advocate, to make known your needs and desires and ensure that you are able to achieve those needs. When you do these things, you are honoring yourself and supporting your own worth. There are many questions that experts ask to determine if you may need more self-love. How do you answer the following? • Do you feel like you are settling? For example, you have a goal that you set but settle for less than you want. • Are you in a relationship that is draining? Some relationships can be just mediocre or even toxic. When relationships lack love and respect, this can be a warning sign that you are not honoring your self-worth. • Are you hard on yourself? Do you compare yourself to others? Do you put added pressure on yourself and strive for perfection? Do you have unrealistic expectations of yourself? • Do you honor your body? Do you treat your body like a tem-

ple? For example, you choose not to exercise or treat your exercise as a form of punishment. When you look at your body, do you see what you do not like instead of loving the things you see? • Do you take care of other’s needs before you take care of yourself? Do you feel overworked or depleted? • Are you afraid of losing love? Do you overcompensate with gifts and acts of kindness to maintain a relationship? When you recognize the need to develop self-love, you can begin to practice it. By finding ways to draw in healthy thoughts and behaviors, you are on the path towards honoring yourself. At first, setting the intention of self-love may seem complicated or even silly. However, by learning self-love, you set the intention and expectation which will allow you to better manage your relationships, work, friendships, and most importantly, yourself! You will develop self-esteem and recognize you are worthy of all you desire. Choosing to love yourself is choosing to honor and respect yourself. There

is a difference between selflove and narcissism. Practicing self-love will help build strong bonds and healthy relationships with those around you. It will also help weed out those relationships that perhaps aren’t healthy. Make the conscience decision to develop a better relationship with yourself. Honor yourself by asking your inner self the following question every day. “What is it that I need to do today to take care of me?” Give yourself a few moments to reflect on the question. When you receive the answer, honor that intention for the day. The answer to this question can vary day to day. Whatever the answer is, that is your intention. Oftentimes the intention is simple, “after work, I will take a walk.” Or “today when I go grocery shopping, I will only buy food that is healthy.”

“As easy as it is to recognize how much we love others, we often have difficulty loving ourselves...” Sometimes, intentions can be more challenging like completing a task that you have been ignoring—or eliminating a toxic relationship. For instance, “today, I will not allow other’s negative talk to affect me.” Use the old nursery rhyme as a mantra; “I am rubber-not glue. Whatever you say bounces off of me and sticks to you”. Your one intention for the day is essential. When you reset your mind with positive thoughts and choices, you honor yourself and help build self-love.

hard work. If you have people around you stuck on a negative path, do not continue to follow that path with them. There is a saying that “misery loves company,” but someone else’s misery should not become your own. Work on limiting the negative relationship and establish healthy boundaries that allow you to develop your self-love. • Believe in yourself and encourage yourself to reach for the goals and intentions you choose. Know you are good enough, smart enough, fun enough to do what you desire. The bottom line is you have self-worth and deserve a fulfilled life. • In the third volume of the Living with Lupus magazine, we discussed negative self-talk. A tool to help to eliminate negative self-talk is to recognize the negative thought and use the mantra. “Cancel, cancel, delete, delete; this thought serves no purpose.” Then replace the negative thought with a positive one. Continue to use this tool but start keeping track of how often in a day you do this. Reflect on how many times you needed to redirect a negative thought and evaluate how you can ease these negative emotions.

• It is essential to tune in to your body. For a lupus patient, this is one of the most important things to learn. Honor your body and the signals it gives to you. Work on the small things you can do to control pain and fatigue. Symptoms are signals that our body is trying to tell us. Recognize there are causes and effects to everything we do in life. Work on watching for the signals and develop ways for you to manage them better. Things like getting proper sleep, eating healthy, managing stress with coping techniques, and making an appointment with your doctor to talk about new symptoms. When you develop self-love, you learn to appreciate who you are. This helps to ground you and develop strong roots which direct you towards infinite love. The practice of developing self-love helps support you physically and emotionally for life. Self-love means having a high regard for your wellbeing and happiness. The greatest gift you can give yourself is the act of love. Be sure to honor and respect your thoughts and wellbeing. When you listen to your intentions, you guide yourself to true love, happiness, and fulfillment.

Additional ways to help develop your self-love: • Recognize relationships that are draining or feel like LIVING WITH LUPUS MAGAZINE

TEST YOUR SELF - LOVE

BASE YOUR ANSWERS ON HOW FREQUENT YOU DO EACH OF THE FOLLOWING. MAKE SURE TO CHECK THE BOXES TO RECORD YOUR RESPONSES. AT THE END, YOU WILL TALLY YOUR ANSWERS.

THIS I DO:

Frequently (3)

1. I eat regularly breakfast, lunch, dinner. 2. I exercise or do a fun physical activity if I’m feeling stressed. 3. I take time to slow down and take care of myself when I’m sick (i.e. get medical care or take some time off work or other engagements to rest). 4. I get enough sleep.

5. I make time to be with my thoughts and self-reflect. 6. I take time to express my thoughts or feelings, or have a creative outlet (i.e. writing your thoughts in a journal or expressive art). 7. I say no to extra responsibilities when my plate is already full.

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Occasionally (2)

Rarely (1)

Never (0)

N/A (Does not apply)

THIS I DO:

Frequently (3)

Occasionally (2)

Rarely (1)

Never (0)

N/A (Does not apply)

8. I spend time with people who make me happy.

9. I give myself positive affirmations.

10. I allow myself to show emotions.

11. I spend time with my pets (plants) or in spaces in which I feel comfortable. 12. I make time to do important things like creating a budget or learning something new. 13. I ask for help if I need it.

14. I spend time with people I care about who care about me too (friends or family). 15. I unplug from harmful social media.

16. I make quiet time for myself to complete necessary tasks. 17. I take time to chat and get to know others (co-workers, students, neighbors, etc.).

LIVING WITH LUPUS MAGAZINE

THIS I DO:

Frequently (3)

Occasionally (2)

Rarely (1)

Never (0)

N/A (Does not apply)

18. I set boundaries in my relationships with my partner, family, and friends. 19. I take deep breaths if I find myself getting overwhelmed, and take time to tend to those emotions. 20. I strive for balance among work, family, relationships, play and rest.

S CO R I N G GIVE YOURSELF A 3 FOR ANSWERING “I DO THIS FREQUENTLY,” 2 FOR “I DO THIS OCCASIONALLY,” 1 FOR “I RARELY DO THIS” AND 0 FOR “I NEVER DO THIS.” SKIP THE QUESTIONS YOU ANSWERED, “THIS DOESN’T APPLY TO ME.” NOW THAT YOU’RE FINISHED AND HAVE YOUR SCORE, THE NEXT STEP IS TO FIND OUT WHAT IT MEANS. TAKE YOUR TOTAL SCORE AND SEE WHICH OF THE CATEGORIES BELOW APPLY TO YOU.

0-15 PTS:

16-30 PTS:

31-45 PTS:

46-60 PTS:

It sounds like you may not be practicing a whole lot of self-love, but you can change that! Self-love is taking the time to care for yourself in whichever way works best for you. We know that to be in a healthy relationship. We each need time for ourselves and our interests, and sometimes even when we are single, our work and school schedules can get in the way of us truly taking the best care of ourselves. It is important to remember that self-care is not selfish; it is self-love. Find more ways to include selflove. Reach out to the office and get connected with a local patient navigator to talk more about self-love: Call 1 (888) NO-LUPUS or text NOLUPUS to 833-449-0800.

It sounds like you may be practicing a little self-care, but you could use some more guidance or ideas on how to best take care of yourself. Remember: self-love is about taking the time to care for yourself in whichever ways work best for you! Just start thinking about what you can do that makes you happy, and do it: Call 1 (888) NO-LUPUS or text NOLUPUS to 833-449-0800 to connect with a local patient navigator.

It sounds like you are doing a good job taking care of yourself! Self-love is essential for your emotional, mental, and physical well-being, so keep it up! If you are used to doing the same techniques or methods, maybe try something new. If you usually journal your feelings, try your hand at art. If you always go for a run or do a physical activity, try some meditation and deep breathing exercises. New experiences can be fun! Reach out to a local patient navigator and let us know your best practices with self-love: Call 1 (888) NO-LUPUS or text NOLUPUS to 833-449-0800 to share your story.

It sounds like you know all about self-love. You are excellent at taking those few moments to focus on yourself! Keep it up! Selflove is self-care and can be positive for anyone, especially for people who have been through difficult experiences. We want to hear from you. Please reach out to a local patient navigator and let us know of your best practice: Call 1 (888) NO-LUPUS or text NOLUPUS to 833-4490800.

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2020 VIRTUAL SUMMIT RECAP In 2020, the Lupus Foundation of America, Greater Ohio Chapter introduced its first virtual summit. Although we miss being able to connect with our lupus community in person, we are happy to still provide the most up-to-date and relevant information through our virtual summits. We are proud to announce that the online platform allowed us to have 100 more attendees than we did in 2019. To watch this three-part series, please visit our YouTube page at https://www.youtube.com/lupusgreateroh. And stay tuned for more educational opportunities in 2021.

PA R T 1 Dr. David Blumenthal

Dr. Van Warren

Dr. Shahdi Malakooti

Presented on health maintenance while living with lupus.

Presented on the medications used to treat lupus.

Presented on the psychosocial impact of lupus.

• Be honest with your doctors, take medications as prescribed, and keep up with your recommended lab tests. • Avoid cigarette smoke, strive to maintain a healthy body weight, be careful to avoid sun exposure, and stay up-to-date on your recommended vaccines. • Work with your medical team to monitor blood pressure, blood sugar, and bone health.

• Your doctor prescribes medications to treat your specific lupus symptoms. • Abruptly stopping medications can cause alarming side effects. • Dr. Warren provided detailed information on commonly used medications.

• To treat overall health, you should also consider your mental and emotional health. • Anxiety, depression, and PTSD are not uncommon for patients. • Body image issues (sometimes caused by skin lesions and hair loss), poor cognitive function, fatigue, and pain can have a huge impact on everyday life. • Recommendations: Implement good lifestyle habits, stay active, and practice self-care.

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PA R T 2 Dr. Stacy Ardoin

Dr. Beatrice Kenol

Presented relevant lupus facts.

Presented on lupus and disparities.

• The importance of a balanced diet and healthy habits while living lupus. • Hydroxychloroquine (Plaquenil), vaccines, and COVID-19.

• Health disparities are the differences that exist among specific populations and healthcare disparities are the differences in access to or availability of facilities and services. • Lupus is 9 times more likely in females, and lupus incidence rates are highest among black women at 3-4 times those of white women. • Hispanic, Asian, and Native American populations are also more likely to develop lupus.

Cindy A. Fiske, BSN A representative from Us in Lupus, presented at all three summits. • Knowledge is power. Try to stay educated and take a more active role in managing your lupus. • Strive to communicate effectively with your healthcare team and strengthen your relationship with your doctors. • Utilize tools to track symptoms so you can keep your healthcare team informed about disease activity. • The Us in Lupus website has many resources for your lupus journey. You can visit the Us in Lupus website at www.usinlupus. com

PA R T 3 Dr. Stanley Ballou Presented relevant lupus facts. • Lab tests are necessary to have a clear picture of what is going on in your body. • How often you need tests is dependent on disease activity. • Medical cannabis is being studied as possible pain management treatment. • Work with your healthcare team to determine the best ways to manage pain.

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Dr. Maria Antonelli Presented on vaccines and lupus. • Persons with lupus have higher risk infections, and those infections often trigger flares. • No vaccine is 100% effective, but partial protection is better than no protection. • Dr. Antonelli provided detailed information on common vaccines. • Those with lupus should not get live vaccines. • Recommendation: Better to get vaccinated while experiencing low disease activity - not in a flare.

Dr. Katherine Nolan Lu Presented on lupus and hair. • Over 50% of both discoid lupus and SLE patients experience hair loss. • There are different forms of hair loss and treatments are available. • Dr. Lu described the importance of early diagnosis and treatment, and provided management recommendations.

MEMBERSHIP Thank You to Our Lifetime Members!

Felicia Acord Louise Alexander Dorothy Anderson Arya Askari Susan M Bader Stanley Ballou, MD Mary Baltes Amanda Baltrucki Carolynn J Bennett Gina Bierman Cynthia Black Karen Braatz Donald Calkins Jeannette Chicoine John D Clough Richard Csoltko Theresa DeMarco Jenny Demuth Mychal Dennis Diane Dustman Mr & Mrs KA Dzigiel Linda M Earhart Marie Edwards Kathryn Ellis Roger Evans Lisa J Evans Carol Everett Maurice L Fabbro, Sr Anthony Fernandez, MD, PHD Fran Fisher Gwen Ford Lou Freiberg Michelle Gaffney Mary Alice Garey Kathryn Gary-Hutzler Ernest Genovese Roxanna Giambri Nancy Goldberg Katie Gugle Joyce Hale Bonnie Harris Connie Hassing Lee Hebert Marlene Herman Jeff Hesler

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BECOME A MEMBER BENEFITS OF YOUR MEMBERSHIP INCLUDE: • Individualized information based on your specific needs and questions. • First access to information distributed by the chapter. • Invitations to regional social events. • The knowledge that you are supporting the mission of the Lupus Foundation of America.

YOUR MEMBERSHIP ALSO HELPS US CONTINUE TO: • Respond to over 1,000 calls a year on our information line • Host lupus support groups • Provide physician referrals • Support research • Promote lupus awareness • Provide books to libraries • Advocate for patients and funding

TO BECOME A MEMBER VISIT LUPUSGREATEROHIO.ORG

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COVID & OTHER NEWS Study Offers New Data on COVID-19 and Lupus and Cautions Against Treatment Discontinuation January 19, 2021 A newly published study from Italy sheds additional light on how the COVID-19 pandemic is affecting people with lupus. Importantly, treatment discontinuation was significantly associated with lupus flare risk. While immunosuppressive drugs, commonly used to treat lupus, may make people more susceptible to viral infections, abrupt drug withdrawal may be more harmful than helpful. Age, lupus disease duration and type of organ involvement were not associated with increased risk of COVID-19 infection. However, COVID-19 infection was more common in those treated with biological disease-modifying anti-rheumatic drugs (bDMARDs), like Rituximab. Researchers assessed 332 people with lupus; 45 were screened for COVID-19 and six (1.8%) tested positive. Five out of the six people with COVID-19 were not socially isolated. One person was asymptomatic, and one individual had a flare during the COVID-19 infection period. Three of the six were hospitalized, but none required treatment in an Intensive Care Unit. The incidence of COVID-19 was slightly higher among this group of people with lupus compared to the incidence of COVID-19 among the general Italian population during the same time (1.8% vs 0.4%, respectively). The researchers also compared incidence of lupus flares before the pandemic (February-July 2019) to the same time frame during the pandemic (February-July 2020) and found there was no significant difference in the incidence of flares. More research is needed to understand the potential links between lupus, therapeutic approaches and COVID-19, and this study was limited by a very small sample size. Talk to your physician before making any changes to your medications.

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Lupus Foundation of America Congratulates Aurinia Pharmaceuticals on FDA Approval of Lupkynis (voclosporin) to Treat Lupus Nephritis TM

January 22, 2021 First FDA-approved oral treatment for lupus nephritis represents a significant milestone for people living with lupus-related kidney disease, a leading cause of disability and mortality in lupus.

For the second time in less than two months, the U.S. Food and Drug Administration (FDA) has approved a new medication to treat adults with lupus nephritis (lupus-related kidney disease) in combination with a background immunosuppressive therapy regimen. Today, Aurinia Pharmaceuticals announced they received authorization from the FDA to market LupkynisTM (voclosporin), a first-ever oral therapy for lupus nephritis that blocks a protein in the immune system called calcineurin. The company previously had reported positive data from a late-stage clinical study that demonstrated Lupkynis was superior to standard of care for treating lupus nephritis. Lupkynis is an immunosuppressant drug that binds to the enzyme calcineurin, a signaling protein that activates T cells, an essential part of the body’s immune system. By binding to calcineurin, Lupkynis blocks T cells from triggering an autoimmune response, reducing inflammation in the kidneys. Large clinical trials of Lupkynis showed it, plus standard of care, had a significantly higher renal response and a faster clinical response over standard of care therapy alone. “A new treatment option to fight lupus nephritis, one of the most devastating impacts of lupus, is a significant moment to celebrate,” said Stevan W. Gibson, president and CEO, Lupus Foundation of America. “For a long time, there were no approved treatments for this potentially disabling and life-threatening complication of lupus. We are thrilled that doctors now have a second new option to treat lupus nephritis, which affects up to 60% of people with lupus.” “I’m excited about having a targeted and potentially viable option in my lupus nephritis journey, shared Monique Gore-Massy, Lupus Foundation of America Ambassador. “This is an exceptional time in lupus science! People like me look forward to having their unmet treatment options addressed, and new options to manage lupus nephritis and their entire livelihood. We have renewed hope!” “It is exhilarating to see rapid progress in new therapies becoming available for people with lupus,” said Susan M. Manzi, MD, MPH, Board Chair and Medical Director for the Lupus Foundation of America and Chair, Allegheny Health Network Medicine Institute and Director, Lupus Center of Excellence. “Lupkynis is the first oral treatment approved by the FDA to treat lupus nephritis. We now have two new therapies for treating a severe complication of lupus and several others in late-stage clinical trials. The future for people with lupus is bright.” Karen H. Costenbader, MD, MPH, Director of the Lupus Program at Brigham and Women’s Hospital in Boston and chair of the Lupus Foundation of America’s Medical-Scientific Advisory Council, praised the people with lupus who participate in studies of potential new treatments. “Without these dedicated clinical trial volunteers, it would not be possible to secure the approval of new life-saving and life-improving treatments for lupus. And with more lupus clinical trials in various stages of planning, volunteer involvement will continue to be vital to ensure the development of more lupus therapies.” The Lupus Foundation of America supported the development of Lupkynis by educating people with lupus about the importance of participating in clinical trials for this new therapy. As part of its efforts to continue engaging people with lupus in ongoing research, the Foundation recently launched an online data platform, RAYTM (Research Accelerated by You). This platform enables people with lupus and caregivers to share their lupus experiences that can help researchers accelerate new treatments and improve disease outcomes.

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PODCAST

My Lupus Living Room The LFA, GOC is excited to announce our new podcast! We welcome you to My Lupus Living Room, a space where we get real about what it’s like to live with lupus. Join our host, chapter President and CEO, Suzanne Tierney, for candid conversations about topics that so often get overlooked. You’ll hear from our Ohio lupus community—including patients, caregivers, and medical experts - about the highs, lows, insights, and advice of living with lupus. Every lupus journey is different, and so it’s time to dig into the stories of people who know lupus and its everyday impact. There are so many aspects of lupus that don’t get talked about enough, either because they’re taboo, or because they’re not considered major issues. My Lupus Living Room opens the door for difficult conversations, unexpected challenges, and uplifting stories that are all part of the lupus journey. This monthly podcast is available at LupusGreaterOhio.org and on major streaming platforms: Apple Podcasts, Spotify, Google Podcasts, Amazon Music, PodBean, and Stitcher. Go to the podcast streaming app or website of your choice, then search for My Lupus Living Room. Make sure you follow us so you don’t miss the latest episodes! Would you like to be on our podcast? Do you have a topic you want to hear about? Connect with us by emailing Info@LupusGreaterOhio.org or call 1(888) NO-LUPUS.

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BLOG Introducing Lupus Night Light Check out our new blog on the LFA, GOC website! This will be a hub for personal stories and articles to help you navigate life with lupus. Learn more about how to cope with the disease and all the effects it can have on various areas of your life. Find tips, patient stories, and get facts about unique topics. Formal articles are so important for understanding lupus. But they can sometimes miss the perspective of what it’s really like to live with the disease. This blog is a channel to share information and insights from the people who know lupus firsthand: lupus warriors like you. Make sure to check your email for notifications about new blog posts. You can also go directly to the blog by visiting LupusGreaterOhio.org.

Do you have a question you would like answers to in our blog? Would you like to share your story with us? Let us know by contacting the office.

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ADVOCACY

THE LONG & SHORT OF IT ALL The film industry has the Academy Awards R but the nonprofit world’s buzz-worthy event of the season is advocacy. It holds the idea of promise, potential, and the promotion of a cause near and dear to supporters. But what is advocacy exactly? Why do organizations place such an emphasis on advocacy, and how does one become involved in the process? Simply put, advocacy means supporting a cause. So, generally speaking, advocacy for lupus happens all the time. From explaining lupus to loved ones to The Walk to End Lupus Now R , advocacy is year-round and comes in many forms. It is always essential that the general public and both state and national legislators know what lupus is. Think of advocacy like an Oscar R -winning actor’s career; our efforts go far beyond one project, one season, or even a whole year. We continuously work toward our mission, which, in turn, may lead us to success on a larger stage. However, there are times when advocacy efforts “ramp-up” in order to secure funding to combat lupus and support

those who suffer from its effects. This type of advocacy (which is slightly more aggressive than just getting the word out) is similar to a campaign. It involves a great deal of time, concentrated effort to define and publicize a message, many meetings, and formal testimony in front of legislators. Every two years, the state of Ohio assembles its biennium budget. This budget serves as a guide for how Ohio will spend money and resources during the successive two years. Ohio’s budget runs from July to June. In 2021, the new budget will be signed into law and begin on July 1, 2021, and run through June 30, 2023. It takes upwards of a year to finalize the process. Every organization wants a piece of the pie, and legislators have to agree on what will and won’t go into the state budget, as well as how much money will be allocated to each organization or project. This budget is so much more than your average groceries-gas-fun money Excel spreadsheet. Although there are some spreadsheets involved, the entire budget is a piece of

legislation that is hundreds of pages long. This involves negotiating between the house, the senate, and the Governor’s office to vote on it and sign it into law. It also consists of many meetings and testimonies from organizations such as the Lupus Foundation of America, Greater Ohio Chapter (LFA, GOC) who seek funding. The process of advocacy (for budget-specific funding) begins in July of an even-numbered year in Ohio. This is when organizations start their campaign and work with the Office of Budget Management (OBM) to prepare budget requests. OBM then works with the Governor’s office to draft a budget. This is called the Executive Budget. The Executive Budget is presented to the General Assembly, usually by the end of January or early February. Then, the Ohio House of Representatives Finance Committee reviews the budget, makes recommendations and changes, and assigns it as a piece of legislation. The House bill then goes to the Senate. The Senate makes their changes and recommendations to the House budget. The LIVING WITH LUPUS MAGAZINE

agreed-upon Senate version is compared to the House version. This is when changes and negotiation take place until a final version is completed. The final version is then voted on and presented to the Governor’s office for their signature. During the entire process, organizations that seek funding must be in constant contact with legislators, lobbyists, the Governor’s office, and key decision-makers to ensure that their message is heard. Not everyone who requests money will be included in the state budget. Legislators must determine there is a valid reason to grant the money requested. How will it impact the state of Ohio? Will the money better the health of Ohio’s residents? Will it prevent catastrophe? Will the money provide aid to those suffering hardships? Will the money be allocated to educate Ohioans? Legislators have to answer all of these questions before allocating money to the state budget. The Lupus Foundation of America, Greater Ohio Chapter was fortunate to receive a line item in the last biennium for lupus education and awareness. It was not an easy process and required many hours of work and a lot of support from LFA, GOC volunteer advocates, staff members, and a lobbyist. Legislators, such as Senator Sandra Williams and Senator Ken Yuko, were instrumental in the process. During the last budget process, the LFA, GOC rallied together over 50 volunteer lupus advocates to travel on a bus to the Ohio Statehouse. It was a tireless day filled with meetings where patients and caregivers told their personal stories of how lupus impacted their daily 29

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lives. Some legislators shared tears; others told personal stories of family members or friends who have lupus. But sadly, most legislators explained they had heard of lupus but didn’t know what it was. The advocates determined quickly they needed to move into education mode. Following the trip to Columbus, the volunteers and Ohio lupus constituents rallied and sent endless letters to the 133 General Assembly expressing the need for lupus education and awareness in Ohio. The staff spent many days traveling to Columbus and testifying in front of committee members. And finally, in July of 2019, House Bill 166, creating the Ohio operating budget for 2020 and 2021, was signed into law by Ohio Governor Mike DeWine. Due to the efforts of advocates, HB 166 included an appropriation item, 440481, for lupus awareness to operate a lupus education and awareness program. It was a momentous occasion and now, two years later, much work has been accomplished due to this appropriation and the advocacy efforts of many. One of the most important aspects of advocacy is the experience of coming together with others who share the same purpose. To promote a cause and collectively speak and join forces. It is tiring but also inspiring and fruitful when all of the time and hard work is rewarded. This year, due to the COVID-19 pandemic, advocacy will look a little different. Many meetings will be virtual with state legislators. Volunteers will be asked to write letters and call legislators instead of going to the State

Capital. But Ohio lupus advocates won’t allow a pandemic to stop their mission to end lupus. Advocacy efforts don’t stop at the state level. The Greater Ohio Chapter also works with the Lupus Foundation of America National office in Washington DC to promote a national advocacy agenda. The National office works with the U.S. Congress and federal and state agencies to ensure that policies are in place to improve the lives of people with lupus and that agencies are responsive to their needs. In addition, they work with leaders at the National Institutes of Health and the Centers for Disease Control to ensure lupus is on the funding agenda. Since 1977, the Lupus Foundation of America has been responsible for generating $138,000,000 in federal funding for lupus research and education. Whether it is word-of-mouth or meeting with congressional leaders, advocacy is not a once or twice a year event. It is a grassroots process that involves endless hours and the commitment of many individuals to ensure that lupus has a home in today’s healthcare agenda. One letter and one call can make a huge difference. This year, the National office will hold the 2021 Digital Advocacy Summit on March 2-4, 2021. For more information or to register, go to www.lupus.org. Locally, those interested in getting involved in advocacy can visit LupusGreaterOhio.org to sign up or get more information. No experience is required!

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

Kathy Holmes

Adrienne Rice-Fernandez

Vice President of Operations and Patient Navigator Leslie@lupusgreaterohio.org

Finance Manager Kathy@lupusgreaterohio.org

Executive Assistant Lead Project Coordinator Adrienne@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.

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 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.

Victoria Hornikel

Aletha Acree

Fundraising & Development Coordinator Victoria@lupusgreaterohio.org

Community Outreach Coordinator Aletha@lupusgreaterohio.org

I joined the organization two years ago, shortly after graduating from Cleveland State University with a degree in Nonprofit Administration. If you call in, I will likely be the one greeting you. I also manage our digital and print communications, constituent database, the walk, and the chapter website. I am so grateful to have started my career at the LFA, GOC and to be learning from this brilliant team of skilled and passionate lupus advocates.

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!

Stephanie Holmes

Social Media Intern 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. LIVING WITH LUPUS MAGAZINE 30

THANK YOU FOR READING THE LOCAL CHAPTER MAGAZINE! OUR NEW WEBSITE IS UNDERGOING FINAL MODIFICATIONS. TAKE A MOMENT TO VISIT LUPUSGREATEROHIO.ORG FOR NEW FEATURES, IMPROVED CONTENT, AND USER-FRIENDLY CAPABILITIES. WE WELCOME YOUR FEEDBACK. 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 COMMENTS ABOUT THE WEBSITE.

Get in Touch:

Lupus Foundation of America, Greater Ohio Chapter 12930 Chippewa Road, Brecksville, OH 44141 (440) 717 - 0183 1 (888) NO - LUPUS

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