Living With Lupus: Issue 12

Suzanne

Greetings,

Did you know that February is the month of romance? Thus, here we are trying to speak about romance in our world of lupus. Interestingly enough I found myself struggling with the word romance. After a great deal of research, my beliefs about romance are quite different from the literary world.

I am blessed to have the best husband in the world, although I may be biased. Together we have made February our happy month for over fifty years. Some pretty great things have happened to us on Valentine’s Day making it our favorite day of the year. We were married on Valentine’s Day, I opened my jewelry store on Valentine’s Day, we got the key to a new house on Valentine’s Day and our daughter was also married on Valentine’s Day. By the way, did I mention my maiden name is Valenti? Just a giggle.

Here is what I found out: In the strictest academic terms, romance is a narrative genre in literature that involves a mysterious, adventurous, or spiritual storyline where the focus is on a quest that involves bravery and strong values, not always a love interest. However, modern definitions of romance also include stories that have a relationship issue as the main focus.

After learning this and looking back, was all this just a quest? I thought romance meant to be in love and the journey of getting there. I guess it is all about perception.

It has been an adventurous journey for us after all, since I have been a sickly person from the time we were married. It has been a roller coaster of ups and downs. It was indeed mysterious being misdiagnosed for over 19 years. We leaned on our spiritual belief system to see us through the storms. We were blessed with tremendous family support, and we have dug deep to find our strength to navigate our storms. Our prayers gave us the strength to keep us brave, while we found our way to achieve all of the above and live with lupus too. I do not want to leave out hope either. We needed plenty of hope along the way too.

Did you know the divorce rate amongst lupians is around fifty percent? I can honestly say that from being sick so young to now as an older woman with lupus, it presents relationship issues that are unexpected. There is no pretending here. It is very difficult to stay on course in life when illness hits a family. I cannot sugarcoat this reality. I have sat with many couples trying to help them create a new world with a chronic disease. Some of them were successful, some were not.

I do not pretend to have a magic secret on how to manage a relationship while being ill. I do know that it does take both of you to manage it. Start with a healthy conversation. Bring a third party in, that you trust, to help if

you need it. I do know many fellow lupians that have had successful relationships. It can happen! But, it really starts with you (a fellow lupian). Trust your partner and communicate with them.

Most of us are dealing with fears and what-ifs. As a couple, you both must understand what lupus is and seek to understand how your beliefs and desires will work with your new life ahead of you. Do not look with your eyes, do so with your heart and then look for the win-win. This is a huge statement from me. I have seen where the fellow lupian is only focused on them. This is a huge roadblock. As a couple, it is us, not an I.

God knows my life may look perfect to the outsider, but you were not along for the journey. As I age, I know that more storms are ahead, but I also know that we need to continue on our quest. Yes, it is a romantic one. But we will continue to need strength and bravery from each other.

So, at the end of the day, my romance story will continue. But with all my heart, I know you can find your own quest and make it your romance story.

Enclosed in this issue we share other couples that are living with lupus. They too have had a quest. See what you can learn from their stories. We also included a great article called, What is your Love Language? This can be entertaining and/or educational. Either way we hope it leads you to more romance in your world.

Together with my staff, our wish is to help you on your quest with lupus challenges. Please let us help. We are here to be a part of your lupus journey and we all really like a good romance story, too.

With a loving heart,

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

CONTENTS

Pg. 1 - 2 Letter from Suzanne

Pg. 4-5 Patient Navigator Corner

Pg. 6-7 Patient Story: Justina and Kyle Patterson Love Story

Pg. 8 Signature Health

Pg. 9-10 Walk to End Lupus Now®

Pg. 11-12 Patient Story: Kathy and Doug Holmes

Pg. 13-14 2023 National Lupus Advocacy Summit

Pg. 15 - 16 Get Involved and Ways to Give

Pg. 17-18 What Is Your Love Language?

Pg. 19 Where Should I Go For Care?

Pg. 20-22 Pros and Cons of Living with Lupus as a Couple

Pg. 23-24 Research and News

Pg. 25 Blog and Podcast

Pg. 26-27 Patient Story: Ruth and Mike Whiley

Pg. 28-29 Could You Have Lupus?

Pg. 30 Staff Page 26-27

4-5 Patient Navigator Corner

6-7

Patient Story: Justina and Kyle Patterson Love Story

17-18

Patient Story: Ruth and Mike Whiley

What Is Your Love Language?

PATIENT NAVIGATOR CORNER

FEBRUARY 2023

The Lupus Foundation of America, Greater Ohio Chapter is always looking for ways to provide help and support to lupus warriors throughout the state so that they can live their best lives with lupus. Several years ago, we completed a needs assessment survey. The survey results showed that some lupus patients would benefit with some help with healthcare transportation, medical financial assistance, and mental health counseling. The chapter submitted grant proposals, and we were successful in receiving funding. We began enrolling patients into our Assistance Programs last year. Since October, 2022, 29 lupians have participated in the programs.

We want to make sure that all lu-

pus warriors know about and take advantage of these programs, if you qualify. In order to get started with any of these programs, you will need to complete the CASE SDOH Needs Assessment form (Case Assessment Systems Evaluation - Social Determinants of Health). This is an assessment that collects information about barriers to care that a lupus patient may have. You may participate in one, two or all three programs if you are interested and if you qualify.

Healthcare Transportation Program

This program provides transportation assistance to lupus patients who have difficulty getting to and from healthcare appointments. Af-

ter the CASE SDOH Needs Assessment Form is completed, a patient navigator will contact you to discuss the program, our partnership with Uber Health rides. If this is a good fit for you, we may be able to schedule rides with Uber Health (while available funding lasts). If Uber Health is not a good fit, there may be other transportation options that could work for you.

Medical Assistance Program

This program provides financial assistance to lupus patients who have out-of-pocket medical expenses. After the CASE SDOH Needs Assessment Form is completed, a patient navigator will then contact you to discuss the program. The program can reimburse up to $200 of eligible out-of-

The Patient Navigator program is funded in part by Aurinia Pharmaceuticals and an earmark from the State of Ohio and managed by the Ohio Department of Health.

pocket expenses within a 6-month period (while available funding lasts). Copies of receipts for current medical expenses are required. Some examples of covered expenses are doctor visit copays, medication copays, lab, procedure, hospital, therapy, dental, and vision care bills. There is no income eligibility requirement.

Mental Health Counseling Assistance Program with Signature Health

This program provides assistance for mental health counseling evaluation and therapy sessions. After

the CASE SDOH Needs Assessment is completed, a patient navigator will then contact you to discuss the program. If you do not have a Medicaid or Medicare insurance plan that is accepted by Signature Health, the Lupus Foundation of America, Greater Ohio Chapter will cover the costs of the evaluation and up to 4 counseling sessions (while available funding lasts). There is no income eligibility requirement.

If you are interested in any of these programs, please complete the CASE SDOH Needs Assessment

Form: https://forms.gle/FUG2oekFEhf4iuJu5. A Patient Navigator will then contact you.

For more information or to speak with a Patient Navigator, please call us at 1 (888) NO-LUPUS, (888) 665-8787, (440) 717-0183 or email us at info@lupusgreaterohio.org.

PATIENT STORY

Justina and Kyle Patterson: A Lupus Love Story

How and when did you meet?

We met at a very young age in school. Kyle’s sister and I were in the same class. But we did not officially start dating until after we graduated high school in 2015. We got married in 2022.

What kind of challenges have you overcome together in your lupus journey?

In 2017, I was diagnosed with lupus nephritis, which was causing stage 2 kidney disease. I used to have to give myself a shot once a week. I would have a wide range of emotions that can be very challenging, but Kyle has been so understanding. Especially when there are days I just lay around and don’t feel well. He just picks up my slack. We learned how to communicate very well.

What unexpected hurdles have you had to overcome?

We had our first baby boy in February of 2022. I carry an antibody from my lupus that could have crossed over to my son’s heart, where they would have had to put a heart monitor on him while he was in my belly. This was the most stressful/scary hurdle for me

personally. Thank God my son is healthy and we did not have to experience that, but the thought of it was terrifying. Lupus is just so unpredictable. Through thick and thin Kyle is always by my side.

How has lupus affected your relationship?

Lupus has affected our relationship in different ways: from mood changes, side effects from trying different medications, and learning what causes flare-ups. Kyle has helped me so much! He shows me how to always see the positives in

the negatives and keep moving forward.

How have you best supported each other during your lupus journey?

Kyle has always been such a positive light in my life and lupus journey. He always reminds me to stay positive no matter what. Kyle always says lupus does not define me as a person. He is always helping me to stay healthy. He has an app, called Yuka, that scans food products to get clear information on the health impact of those

products. This helps me know which foods or products can cause flare-ups for me. It shows me that Kyle is always looking out for me.

What have you learned from each other?

We learned that communication is always key. Kyle had to educate himself on what lupus is and the symptoms of it. He had to learn about SLE and lupus nephritis since I am diagnosed with both. Lupus was a big adjustment, not just for myself but for Kyle as well. We have learned patience is so important within our marriage.

What do you love most about each other?

Justina: What I love most about Kyle is how hardworking he is to support his family and always helping others in need. He is also an amazing father, I love watching him with our son.

Kyle: What I love most is her smile but mostly how wonderful of a

mother she is to our son. I love that she’s ambitious and hardworking.

What has life with a chronic illness taught you about marriage?

Life with a chronic illness has taught us marriage will always have challenges no matter what. Life will always have its ups and downs, but we will always have each other regardless. We always strive to stay positive and calm through the storm.

What advice would you give to couples learning to live with a chronic illness?

Patience and communication are so important when living with someone with a chronic illness. Being supportive even when you do not understand what is going on with the other person is very important as well. Always love and forgive, because some days I can be so mean and needy without even knowing it. Always show your partner how much you appreciate them.

Introducing a New Mental Health Program with Signature Health.

Please do not lose hope, there is help! The Lupus Foundation of America, Greater Ohio Chapter knows how challenging it is, emotionally and mentally, to live with a chronic illness. This is why we have established a partnership with Signature Health to ensure that Ohio lupus patients have access to mental health support.

Who is Signature Health? Signature Health is non-profit, Federally Qualified Health Center providing health, addiction recovery, and primary care services to people across Ohio, via telehealth and in-person at locations in Ashtabula, Beachwood, Lakewood, Maple Heights, Painesville, and Willoughby. They have a team of experienced counselors, case managers, psychiatry providers, and nurses who work together to provide compassionate care.

The program will provide a 90-minute diagnostic evaluation to help determine the best mental health services for you. If you do not have a Medicaid or Medicare insurance plan that is accepted by Signature Health, the Lupus Foundation of America, Greater Ohio Chapter will cover the costs of the evaluation and two counseling sessions per month for a period of two months (while available funding lasts). Signature Health’s financial representatives also will be available to answer questions about covered benefits.

Get Started: Mental health matters, especially when dealing with a chronic illness. To take advantage of this program, please fill out the digital form.

Questions? Contact the Lupus Foundation of America, Greater Ohio Chapter at 1-888-NO-LUPUS or email Info@LupusGreaterOhio.org.

Do you need immediate help now? If this is a life-threatening emergency, please go to your nearest emergency room or dial 911. For non-emergency situations (domestic violence, food/shelter, etc.), dial 211 to speak to a live operator. If you are experiencing suicidal thoughts, call or text the National Suicide and Crisis Lifeline by dialing 988. You can also chat at 988-lifeline.org.

When I joined the Lupus Foundation of America, Greater Ohio Chapter’s Cleveland Walk to End Lupus Now® in 2018, I witnessed people come together in support of the LFA, GOC. Every walk event gathers members of the lupus community who are united by the mission to improve the quality of life for all those impacted by lupus. Once I joined the LFA, GOC staff, the wonderful leaders of the organization taught me all about Systemic Lupus Erythematosus (SLE) and I learned how lupus, in its various forms, is so much more prevalent than I had realized. I began to see the importance of the services offered to patients and their loved ones, and I eagerly absorbed all the information that I could regarding the LFA’s comprehensive programs of research, education, and advocacy.

The Walk - 2019

As a part of “Team Lupus,” I embraced the role of walk coordinator. Under the guidance of the VP of Operations, Leslie Tierney, I had the honor of facilitating the 2019 Walk to End Lupus Now® events in Cincinnati, Cleveland, and Columbus. I was recently looking back at the results from these campaigns and was once again deeply moved by the impressive number of attendees and the inspiring 1,000+ Walk Warriors that participated in peerto-peer fundraising. It was such a privilege to work with the contributors throughout these campaigns, encouraging the incredible individuals who cumulatively raised nearly $115,000.

The Pandemic

The LFA, GOC relies on the generosity of individuals like you to further our mission. Our existence isn’t possible without you! When the COVID-19 pandemic struck, fundraising was forced to go virtual; and nonprofit organizations saw a huge loss in funding. We deeply appreciate the many donors who participated in the 2020 and 2021 walks. We also want to give a shout-out to those who contributed in nonfinancial ways to help to preserve camaraderie while maintaining a safe distance. The Walk Warriors who fundraised during this time demonstrated an ongoing commitment to eradicating lupus. We know that the pandemic has been especially difficult for so many, but you have helped to keep our momentum going, and we couldn’t be more thankful. Our lupus community has remained dedicated to the mission, and we will not lose sight of our vision - a world without lupus.

by Victoria Hornikel

The Walk - 2022

In 2022, the Walk to End Lupus Now® became a hybrid event. In addition to those who attended virtually, approximately 300 people came out to the in-person event in Cleveland. The comparison of this small, but successful event with the accumulated data from the three pre-COVID walk events in 2019 turned up some fascinating results. While we anticipated a large decline in registration and total participation, it was the numbers that had actually increased from 2019 to 2022 that really stood out to me. It is with immeasurable gratitude that I would like to acknowledge the hard work done by the 168 individuals (over 80 percent decrease from the 1,021 fundraisers) who actively fundraised in 2022.

Every year, the fundraisers strive to accomplish their goals, and we are immensely appreciative of their achievements. But in 2022, the outstanding effort was obvious. The average amount raised by each individual in 2022 was $208.50, up nearly 150% from $83.50 in 2019. Results like this are almost unbelievable. The power shown by the lupus community is consistently impressive! Ohio’s Lupus Walk Warriors have continuously helped rally public support, understanding, and compassion for those living with lupus. Thanks to you, the LFA has supported over 450 groundbreaking research studies at top medical institutions. In the past 5 years alone, supporters nationwide have stimulated over $687.5 million in federal funding for lupus research!

The Research

The Lupus Foundation of America’s research is anchored in what matters: TRANSFORMING LIVES. The LFA’s patient-first research approach delivers better results to improve quality of life. We are the only organization that tackles lupus from every direction, challenging what isn’t working and funding and supporting research that is most hopeful to identify the causes of lupus, understand its progression, accelerate the development of new treatments, and ultimately find the means to prevent and cure this life-threatening disease. The pace of lupus research must continue to accelerate! Only with an expanded research effort will there be gains in understanding the disease, developing targeted therapies, and identifying individuals at risk of developing lupus, particularly those groups at risk of poorer outcomes. This is not a task for one individual, one family, one research group, one pharmaceutical company, or one single funding agency. Only through a comprehensive approach and by working together can we, the stakeholders, create and drive meaningful advances in understanding and treatment of this often-debilitating disease. The public must be involved to promote awareness about lupus. Your awareness-raising efforts and research investments drive breakthrough medical advances - so those suffering stop waiting and start living the lives they want.

The Lupus Foundation of America, Greater Ohio Chapter Walk Planning Committee

There is one word that comes to mind to describe the combined strength of our Ohio lupus community. That word is resilience. We have come together in our darkest hours to overcome and persevere in the fight against lupus. Let us all be reminded of our power, our community, and our continued commitment to fight against lupus. Thank you for being an important part of the lupus community. Together, we will make a brighter future for all people impacted by lupus.

If you are interested in participating in the 2023 walk events in Columbus and/or Cleveland, please reach out today! Contact the office at (440) 717-0183 or send me an email at Victoria@LupusGreaterOhio.org.

PATIENT STORY

Kathy and Doug Holmes: Faith in Love, God, and Each Other

How and when did you meet?

Doug and I were introduced by our mutual friends, Mike and Kathy. They invited each of us over to their home to play Trivial Pursuit. We played on the same team and eventually won the game. Shortly after that we went on our first date.

How has lupus affected your relationship?

Lupus has affected our relationship almost from the beginning. During the year before our wedding I began having symptoms of joint pain and extreme fatigue. This went on for months. It was all I could do to get up in the morning and go to work. One week before our wedding I woke up with a red rash like a sunburn all over my legs and face, and my legs were so stiff I could hardly bend my knees. As soon as my doctor saw what I looked like he said I think you have lupus. When I told him I was getting married in one week he put me in the hospital on IV prednisone. I became well enough that we were able to get married and go on our honeymoon to Vermont, Maine, and Nova Scotia. We had a very nice honeymoon in spite of my still being in a flare up of lupus.

Doug was very supportive, and though I felt uncertain about my physical health I felt secure in our relationship enough to know we could get through this challenge.

What kind of challenges have you overcome together in your lupus journey?

Our biggest challenge came a few years after we were married and I had a flare that affected almost every organ in my body. The worst part was that it seriously affected my kidneys. We had been dealing with the normal challenges of a new marriage when I began to feel so ill that I could no longer go into work. This went on for weeks until I ended up in the hospital for three weeks. Once I was stable enough to go home Doug took very good care of me, making healthy meals, and maintaining our home. All I did was rest and if I was able we did things together outside our home. The seriousness of how ill I was quickly brought us closer together and we were able to communicate with each other about our fears and how we were going to get through this health challenge.

How have you best supported each other during your lupus journey?

Doug has always been very supportive and understanding regarding my lupus. He has always carried more than his share of the physical work of maintaining our home. This allowed me time to recover and eventually I started working outside the home again. I had been volunteering at the Lupus Foundation and there was a job opening so I began working part-time, while Doug worked his full time job. Things settled down and under the care and guidance of my doctors we decided to start a family. I became pregnant and we were very happy and very grateful because we had been told that I probably would not be able to have children due to the drugs used to treat my lupus nephritis. We had our daughter, Stephanie, in the spring of 1996 about two and a half years after my lupus nephritis diagnosis.

What has life with a chronic illness taught you about marriage?

Life with a chronic illness has taught me to be grateful for the

good days, and for the fact that we have been able to stay married for over thirty two years. I truly found out what the “in sickness and in health” part of our vows means. We have lived it. We have learned to take life one day at a time. Doug has taught me the importance of choosing your battles. Some things are just not that important and not worth fighting over. It has taught me patience and perseverance. I am also learning how to be less selfish and more focused on others. Doug has been a good example of this in the way he lives.

What unexpected hurdles have you had to overcome?

A few unexpected hurdles have included new health challenges. I was diagnosed with thyroid cancer in 2014 and had a thyroidectomy and treatment for the cancer. We came through that fairly well – it was actually not as difficult as dealing with lupus nephritis. About three years ago I was diagnosed with another autoimmune disease, scleroderma or CREST syndrome. I have some difficulties but nothing

like what we have dealt with in the past. We are living a peaceful, quality life even with the health challenges.

What have you learned from each other?

The tough times have prepared us for whatever lies ahead. We are both Christians, we have always been a part of a church since we were married and we each grew up going to church. Our faith has been a huge part of why we are still together and why we have come through our challenges and have been able to learn something from them. We have seen the hand of God working in our lives so many times.

What do you love most about each other?

The thing that attracted me to Doug in the beginning was his seemingly endless knowledge about many things. On one of our early dates he took me to Lakeview Cemetery and I was amazed about how much he knew about Cleveland history and the different famous people buried there. Doug liked that I was confident, independent, had a challenging job as

a manager in a retail store, and I lived in a very cool duplex right on the lake in Lakewood. What I love about him today is his selflessness and concern for others.

What advice would you give to couples learning to live with a chronic illness?

I am not one to give advice. I can only tell people what worked for us. The most important thing for me is faith in God. If we did not have our faith, I am not sure where we would be today. We also have been able to depend on each other, especially during the tough times. When we do have problems they are usually due to poor communication and we are both trying to improve on that. We choose as much as possible to be with positive people. Our involvement with the Lupus Foundation has also been very important to both of us. We have met some great people because of my having lupus and that is a real gift that I am so very grateful for.

2023 National Lupus Advocacy Summit

Learn. Connect. Advocate.

For the first time since 2019, lupus advocates will come together in Washington, DC for the nation’s largest lupus advocacy event! From April 23–25, Summit attendees will learn from experts in the field about the latest in lupus research, connect with hundreds of their fellow lupus advocates, and turn Capitol Hill purple by advocating for their members

of Congress to join our fight against this terrible disease. Register online here: https://lfa. formstack.com/forms/2023summit

Learn.

Hear firsthand from the brightest minds researching and treating this disease and receive training on how to advocate for yourself and others with lupus throughout the entire year.

Connect.

There’s no other event in the world that brings together as many people affected by lupus as the Summit. Be surrounded by those who understand your challenges and can help you manage them.

Advocate.

Meet with your members of Congress to tell your lupus story and urge them to join our fight against this terrible disease by supporting policies to improve the lives of all people affected by lupus.

Registration Details

Your Summit registration fee of $50 provides you with an all-access pass to the 2023 National Lupus Advocacy Summit. We collect this fee to reserve your spot at the event and slightly offset the costs associated with planning and executing an event of this size. The registra-

tion fee is waived for advocates 18 or under.

Included in your registration fee is:

• Exclusive access to our discounted room rate at the JW Marriott, Washington, DC

• One-of-a-kind Lupus Foundation of America backpack

• Breakfast, lunch, and snacks throughout the day on Monday, April 23

• Breakfast on Tuesday, April 24 and refreshments after your meetings on Capitol Hill

• Discounted transportation to and from Capitol Hill for your congressional meetings

• Scheduled meetings with your members of Congress and access to a mobile app to help you navigate Capitol Hill, keep notes on your meetings, engage your members of Congress on social media, and more.

After you register for the Summit, you’ll receive much more information to help you prepare

for your trip to Washington.

The week before the Summit, National will host a webinar to review everything you need to know and answer any final questions you may have. If you have any questions in the meantime, please contact Travis Smith, Sr. Director of Government Relations, at SmithT@ lupus.org or call 1.866-4-THELFA (866.484.3532).

Virtual Access to the 2023 Summit

For advocates unable to travel to Washington, DC this April, we will once again provide for advocates to participate virtually by streaming Summit sessions, connecting with their fellow advocates, and urging their members of Congress to support policies to improve the lives of people with lupus. Register now for virtual access to the Summit! Register online here: https://lfa.formstack.com/ forms/2023summit

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 now: lupusgreaterohio.org/stay-informed

Text Message Notifications

Text “NOLUPUS” to 833-4490800, complete your contact information, and be sure to opt in to receive important lupus updates directly to your mobile device.

Get Social

Join us on our social media platforms to stay connected: lupusgreaterohio.org/stay-informed/ get-social

Instagram.com/lupusgreaterOH Facebook.com/lupusgreaterOH Twitter.com/lupusgreaterOH

Become a Member

One-year: $25 Lifetime: $200 lupusgreaterohio.org/get-involved

GET INVOLVED JOIN THE COMMUNITY

Host a Third-Party Event

Do you have an idea to support the mission? Give us a call at the office to discuss and plan your own fundraising activity to benefit the LFA, GOC. Here are a few examples of virtual events that people have coordinated in the past: Pampered Chef Party, Online Auction, Charity Video Game Tournament.

If you are interested in hosting a third-party event, reach out to us for our official guidelines and an application.

Advocacy

Each year, the National Lupus 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 Washington D.C. that ensures the lupus agenda is at the forefront of the legislature. Last year’s National Lupus Advocacy Summit 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 programming produced by the LFA, GOC over the past two years has been a direct result of the funding provided by the state of Ohio and the Ohio Department of Health. It is imperative that we let Ohio’s leadership know the importance of keeping lupus in the public health agenda. lupusgreaterohio.org/ get-involved/advocate

WAYS TO GIVE

Traditional

• Checks

Please make checks payable to the Lupus Foundation of America, Greater Ohio Chap ter, and mail them directly to 12930 Chippewa Road, Brecksville, Ohio 44141.

• Credit Card + PayPal

Fill out the online donation form or call the office.

• Facebook Fundraisers

• Instagram Stories

In Honor of

• Memorial Donation

• Tribute Donation

Through Your Job

• Employer Matching Gift Program

Ask your employer if they match charitable contributions made by their employees.

• Combined Federal Campaign CFC #51890

Investing

• Stock or Other Securities

• Life Income Plans

Pooled Income Fund

Charitable Remainder Trusts

• Creating Healthier Communities CHC #9963

• United Way Campaigns

Other

• 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 lupusgreaterohio.org/get-involved/donate or call our office at 1 (888) NOLUPUS.

$1,000 FUNDS EDUCATIONAL SUMMITS FOR OHIO

$500 SUPPORTS 8 NEW PATIENT EDUCATION CLASSES

EQUIPS LFA,GOC PATIENT NAVIGATORS WITH TRAINING $250

PROVIDES FINANCIAL AID FOR MEDICATION CO-PAYS $100

HELPS A LUPUS PATIENT WITH TRANSPORTATION $45

SENDS AN INFORMATIONAL PACKET $5

LUPUS MAGAZINE

What is your love language? We often think of love and relationships in February because there is that all important holiday, Valentine’s Day. But as many of you know, and I’m sure understand, love is important all year when it comes to relationships. However, how you show your love to your partner can be different from what they want or what you prefer to give.

In 1992, Gary Chapman wrote his book The Five Love Languages: How to Express Heartfelt Commitment to Your Mate. Chapman explained that there are five love languages that partners will use to show their love to each other. These five love languages are physical touch, quality time, words of affirmation, acts of service, and giving/receiving gifts. Each language is different in how you show it and how you receive it, and everyone has their own comfort level with each.

Chapman emphasizes that it is not simply enough to know the love languages. Partners need to

what is your LANGUAGE?

By Tina Flynn

understand which love language fits their significant other best. We often show love the way we would like to receive it, but we should be listening to and watching our partners to understand what kind of love language they want to receive.

For example, I know that my love language is acts of service. I love when someone will take a chore off my plate and I do not have to do it. However, my husband’s love language is physical touch. He loves hugs, cuddles, and being close to me. We have had to modify these behaviors for each other, knowing that each other prefers a different love language. As we explore each love language, try to figure out which fits you and your partner best.

Physical Touch

Physical touch can be very important for some people as a love language. You may immediately think that this means sex, which there is an aspect of that for romantic relationships, but it is more

about closeness and comfort. For some, physical touch is important because the physical closeness of their partner can make them feel safe and secure. Physical touch also releases oxytocin, a hormone that naturally makes us feel safe, warmth, and comfort.

A back rub, a hug, or even a squeeze on the shoulder can release oxytocin causing us to feel joy and love for our partner. Physical touch has also been shown to help your immune system, which is why you’ll hear many doctors encourage parents to hold and comfort their children when they are sick. If you prefer physical touch make sure you communicate with your partner what you like and how it makes you feel.

Quality Time

Spending time together is not just about being in the same room. Time together needs to be intentional and not an afterthought. If your partner prefers quality time with you over other love languages, make sure you are setting

aside time for them daily or weekly to connect with them. By finding time to focus on your partner they will feel important and loved. This time together does not need to be anything extravagant. A short walk, making a meal together, or simply sitting together for some good conversation. An activity where you can focus on each other is best for quality time. So put down the phone, turn off the tv, and focus on your partner.

Words Of Affirmation

Do you think about a compliment you received weeks ago and it still brings a smile to your face? Then your love language may be words of affirmation. This love language refers to communicating your love, appreciation, and respect to your partner. The goal is to encourage and lift up your partner with your words of affirmation to them. A simple compliment may mean the world to them and make their day all the better.

The nice thing about this language is that it can be spoken or written as well. A handwritten note goes a long way in showing love for your partner, especially because they can save your note and refer back to it whenever they want. Even a simple “I love you” text during the day can have a positive effect on your partner. Remember the goal is to express how much you love, care, and value your partner.

Acts of Service

Do you love it when someone does a chore for you, a miniscule task to make your life easier, or just something that you enjoy to make you happy? Your love language may be acts of service. I am one of those

people. I love when someone makes a phone call for me, grabs me an extra treat or drink, or does a chore I am dreading to do. Acts of service do not have to be grand gestures for the recipient, and can be as tiny as getting the mail from the mailbox.

Acts of service can take on many different forms, but ultimately it is giving up your time for your partner and doing something you know will brighten their day and make them feel loved. It can be time-consuming and even exhausting at times, but it’s worth it because it is how your partner needs to be shown love. Your partner will feel so appreciated and happy you have done something just for them because you love them.

Giving/Receiving Gifts

It is safe to say that everyone likes to receive a gift. However, it can mean more to some people than others. This love language, like the others, is about feeling valued and like someone is taking care of you. Gifts to and from others do not have to be expensive, just thoughtful. Love looks and feels like a tangible item, no matter how extravagant or small.

Gifts can look like buying food for your significant other when you know they are hungry and haven’t eaten, bringing them coffee when they are at work, getting tickets to their favorite show or movie, or leaving a small gift somewhere for them to find. Giving a gift could also be gifting an experience to your significant other, which can also help you with quality time. Sometimes just giving the gift of

yourself and your attention can show your partner how much you love them.

Final Thoughts

Now that you are versed in the love languages it is important to stress that everyone has a different love language. Like the example I gave at the beginning with my husband and I, everyone’s love language looks different. But there are great benefits to knowing and understanding what your partner’s love language is and how to fulfill it.

By speaking your partner’s love language, it can help you develop better communication and intimacy with your partner. You may learn a lot about each other and create a closeness and an understanding that may not have been there before. Practicing love languages may also help you in understanding how your partner experiences love, both in giving and receiving. Knowing how to show love in a meaningful way can build a relationship up and make it stronger.

Regular communication about you and your partner’s love language is essential to practicing love languages with each other. Your love language may change or morph over time, as may your partner’s. It is important to check in with each other and keep the conversation going. By taking these little steps you will both feel more valued and appreciated by the other person. With knowing each other’s love language, you will both likely be more thoughtful in your relationship with each other and with other people too.

PROS AND CONS OF LIVING WITH LUPUS AS A COUPLE

As a person with a disability, we can feel burdened by our disease, and fear that we may be a burden on others, too. My husband has never made me feel that way. He married me knowing that lupus is a degenerative disease, knowing that in sickness and health would be a real and prevalent part of our lives. He has supported me, loved me, encouraged me to be my best self, and he takes care of me without a second thought. He comes home and makes sure I have a cup of hot tea, that I have taken my medicine, he asks me, “how can I make your life better today?” He cooks and cleans, does laundry, and picks up extra responsibilities around the house when I am feeling down, all without ever complaining.

I am loved without ceasing. My partner sees me as I am, on good days and bad, and loves all sides of me without question. My disease may be powerful, but my marriage is stronger.

- Jordin Maria

Honestly, I don’t know. Because I’m the one with SLE, I can’t answer. From my perspective, though, of course it helps to have someone hold your hand through things and to help you as you heal. That’ll be a pro. A con: It’s really tough being with a chronically ill person, and it can be exhausting.

- lulu izy

Having someone to go through it with, sometimes I feel like a burden - _iamthtiam

Pros; teaches compassion, provides a better quality of life for the person with lupus, and they become a new advocate for lupus. Cons; they never truly understand what it’s like to live with lupus, they get tired of dealing with the illness, and they lack enthusiasm to support and advocate lupus.

- lupiegirl

I’m the one with lupus. My partner works full time and I do the house stuff. Except lots of the time I struggle with this. We often have to cancel plans because I’m unwell. Wish it was different.

- janus1273

I can’t see any pro’s as the sufferer, except it is easy to become the reason why things aren’t achieved and things aren’t right.

- niki.solomon

My relationship is going well. We have our ups and downs, everyone in relationships has them. Joe knows that I have my bad days and my good days, and even my silly days. If I end up in the ER, due to very bad depression/anxiety attacks, he is there. He is a loving and caring boyfriend. We will have been together for 3 years, March 3rd. We take care of each other. We remind each other about taking our meds and make sure we each have what we need. We enjoy the little things, like our birthdays both being in September and having many hobbies in common.

- Mary Kaminski

I am the one with SLE and I have no partner. In the past I have had a partner and usually there wasn’t enough understanding. I look well on the outside but the inside is horrible, so they tend to think I can do more. Sorry not Sorry.

- missnanuk

Cons...life is much harder with lupus. Pros...excellent medical care.

- mouszer51

With a diagnosis of Lupus in any form, your life will change. In order to navigate that change together, your partner should go to the Rheumatologist to get their fears and questions answered. Another set of ears is always appreciated because recalling what the doctor said can be a challenge for the Lupus Patient.

Counseling is very important as your life is going to shift, your needs will change, and old habits need to be assessed and changed to new habits. All of these changes can bring out emotional turmoil in your relationship. A trained therapist can smooth over the harsh realities and help your partner work with you not against you. They can also deal with the big emotions that will come up as you are going to mourn the way you used to be able to do things. If you have children then family counseling and explaining things them will help them as well.

- Amy Filbert

Having lupus and being in a relationship has taught me that no matter how bad the flares get with lupus, there will always be someone who will always love you unconditionally. Giving you encouragement, empathy, and even throw a wig on you, if you start losing your hair a little bit. Making you feel that you’re the most amazing person in this world, when you feel as if you are a ugly duckling. Giving you faith when you have none. Being in love and having lupus is not a burden, it is truly beautiful and amazing.

- Tonyakristin Henderson

My loving husband, Stephen has been the most caring and understanding person, especially dealing with me. I am not the easiest person to get along with when I’m having a bad day, but I feel like I am the luckiest person to have him by my side.

When you have an invisible illness, it’s hard to explain to someone who doesn’t have a clue. It’s a daily struggle being in pain or feeling sick on the inside , when you look fine on the outside. I’m saying that communication is key. Even if you’re as stubborn as I am, it’s a must. Never forget, it’s ok to ask for help and I’m finally realizing that.

- Kelly Perhach

RESEARCH & NEWS

Study Shows Key Differences Between Males and Females with Lupus

A recent study shows the key differences between males and females with lupus. While socioeconomic factors continue to exist as a barrier, the study found major clinical and health literacy differences between male and female lupus patients.

Researchers studied 1,462 people (126 males and 1,336 females) with lupus in the National Institutes of Health (NIH) All of Us Research Program. The study described and compared characteristics of males and females with lupus by analyzing electronic health record and survey data. Researchers examined disease manifestations, prescribed medications and socioeconomic factors, including health literacy and healthcare access.

The study revealed several differences in disease signs and

symptoms, healthcare experiences, and health outcomes between males and females. Notably, males reported lower educational attainment and had significantly less confidence in completing medical forms than females. The findings suggest disproportionately poorer health literacy in males with lupus, which may lead to worse health outcomes. Additionally, myocardial infarction, or heart attacks, were significantly more common in males, while reported levels of fatigue among males were lower.

The study also uncovered commonalities among males and females with lupus. Namely, barriers to healthcare access and utilization were common in both males (40%) and females (47%). Additionally, delays in seeking care were also common across races. However, only females of races other than Black/African American and White

specifically reported delayed care due to cultural differences with more frequency.

There are approximately 1.5 million people in the United States with lupus, but only about 10% of them are men. Men with lupus are an understudied demographic, and the findings from this study contribute to the small, but growing, amount of research exploring differences between males and females living with the disease. Future studies will need to include more men to better understand the variety of issues that influence lupus and how it affects their healthcare.

Learn more about men’s health and special considerations with lupus: https://lupusgreaterohio. org/study-shows-key-differencesbetween-males-and-females-withlupus/

Anifrolumab (SAPHNELO®) Associated with Low Lupus Disease Activity

In further Phase 3 TULIP trial research of anifrolumab, commonly known as SAPHNELO®, people with lupus taking the drug experienced earlier, more frequent, and more prolonged and sustained low lupus disease activity (LLDAS). Typically, low disease activity levels help improve outcomes in people with lupus.

Researchers analyzed 52-weeks of TULIP-1 and TULIP-2 trial data from 819 people with moderate to severe lupus who received anifrolumab or placebo. At 52 weeks:

• 25% of study participants attained LLDAS and improvements were 3x greater among those who attained LLDAS compared to those who did not

• 30% saw increased time in LLDAS and sustained LLDAS

• 15.3% attained remission by week 52

LLDAS is defined by several key measurable requirements that indicate low disease activity level. In this study, the researchers used the British Isles Lupus Assessment Group-based Composite Lupus Assessment (BICLA) score and the

Anifrolumab continues to prove an effective treatment for lupus. Additionally, this study suggests that remission is an attainable goal with the use of targeted therapies in lupus and further analyses of remission attainment in this trial are planned.

Learn more about treatments being studied for lupus: https:// lupusgreaterohio.org/anifrolumab-saphnelo-associated-with-low-lupus-disease-activity/

New Investigational Drug for Systemic and Cutaneous Lupus Advancing to Phase I Clinical Trials

Ventus Therapeutics Inc. has announced the development of VENT-03, a potential first-in-class drug designed to target cGAS, a cell receptor linked to lupus and a broad range of other diseases including neuroinflammatory and neurodegenerative diseases. This will be the first drug of its kind to advance into clinical development, and it will enter its first Phase I trial. cGAS is thought to be involved in both systemic lupus erythematosus (SLE) and cutaneous lupus erythematosus

(CLE), and the latest news marks an exciting step forward in lupus drug development.

Last year, Ventus received a Lupus Research Program Idea Award from the U.S. Department of Defense (DoD) to study the cGAS inhibitor as a potential treatment for lupus. The Lupus Foundation of America’s (LFA) advocacy efforts and strong community of advocates led the fight in establishing the DoD Lupus Research Program in 2017, successfully advocating

each year for continued funding of this critical program. To date, the program has provided more than $76 million to fund high-impact, high-quality studies to help find ways to diagnose and treat lupus more effectively.

Continue to follow the LFA for updates on VENT-03 and learn more about medications used to treat lupus: https://lupusgreaterohio.org/ new-investigational-drug-for-systemic-and-cutaneous-lupus-advancing-to-phase-i-clinical-trials/

SLE Responder Index-4 (SRI(4)) to assess efficacy.

LFA,GOC BLOG & PODCAST My Lupus Living Room

EPISODE 20- Navigating The Holidays

Hosting or helping with social gatherings can often leave Lupians feeling overwhelmed and burnt out. Suzanne shares practical advice and tips on how to balance busy seasons so that you don’t overdo it. She also provides an update on the chapter and all of the exciting things in the works for the new year!

EPISODE 21 - The Vegan Vixen

Suzanne sits down with Chef Chanel Nowel, The Vegan Vixen! Chef Chanel shares her journey and how she uses a plant based diet to manage her lupus. She is a mother, wife, professional chef, author, and an absolute joy to be around.

Lupus Night Light

Our blog, Lupus Night Light, is a place where we share stories, and practical advice from patients that they have learned along their lupus journeys. You will find stories of triumph, hardship, and everything in between. It is meant to be a cathartic journey for both the contributors and readers alike.

RUTH AND MIKE WHILEY:

50 Years of Love and Lupus

How and when did you meet?

I was recruited from Ball State University in Indiana for a teaching position in 1971 in Lancaster, Ohio. Mike had recently been discharged from the Army and was working in an electronics store. We probably never would have crossed paths until a mutual friend introduced us in the spring of 1972. We married on June 23, 1973. We will celebrate our 50th anniversary in June. I was diagnosed with lupus a few months later in the fall of 1973.

How have you best supported each other during your lupus journey?

We were newlyweds when I was diagnosed, so not only was lupus new but just being a married couple was new. I was just starting my third year of teaching, so I ended up taking an unpaid leave of absence for the rest of the school year. We relied on my husband’s salary and insurance during that time. When I was able to return to teaching in the fall, Mike was able to leave his job and find a more

fulfilling occupation, so it was my turn to be the breadwinner. We respected each other’s career choices.

What kind of challenges have you overcome together in your lupus journey?

Probably the biggest challenge was the stillbirth of a much wanted baby daughter. We waited a few years before deciding to try to start our family, with the blessings of my doctors. However, things didn’t go as planned, and it put a fear

into us of trying again. We decided to start our family through the process of adoption, and in 1979 we adopted a six-year-old boy and our family was complete.

What do you love most about each other?

Mike said that he loves my persistence, understanding, positive attitude and how I care about others. I love everything about Mike. He has stayed by my side through all the ups and downs of lupus. He doesn’t take life too seriously which allows us to stay upbeat. He

has learned to accept my mood swings as part of the deal and allows me to de-escalate so we can just move on. It has worked for 50 years!

What has life with a chronic illness taught you about marriage?

A chronic illness has a life of its own. Things can be going along well and suddenly you have a new surprising situation. I had never experienced Raynaud’s Syndrome until suddenly my hands became extremely painful and my fingers were turning black. I was diagnosed with a form of gangrene and fortunately was referred to the correct specialist. It never occurred again. Just gave us a frightening few weeks.

What unexpected hurdles have you had to overcome?

We love to travel and have been fortunate to go many places over the years. The past few years with COVID taking over society and my loss of strength and ongoing balance issues, we have had to put

a halt to travel plans at the present time.

What have you learned from each other?

I know I have learned how lucky I am to have Mike as my husband. He has continued to do all of his chores around the house, mainly outside, but he has taken on more and more of my responsibilities inside the home. We both have learned that we are stronger than we thought we were.

What advice would you give to couples learning to live with a chronic illness?

We were at a bit of an advantage. We really don’t know what married life would be like without having someone experiencing a chronic illness since this started during our first few months. Just be as understanding as you can be. The spouse without the illness has needs, too, and should never be forgotten in the scenario. We have friends experiencing all kinds of chronic illnesses, including ALS and MS, so you are definitely not alone.

Could You Have Lupus?

Brain and Nervous System

Have you had a seizure or convulsion?

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?

Heart and Lungs

Eyes, Nose, and Mouth

Have you had sores in your mouth or nose that lasted more than five days?

Have you developed irritation or dryness in your eyes or mouth for more than a few weeks?

Stomach and Intestines

Have you had unexplained weight loss or abdominal pain or tenderness when your belly is touched?

Have you had a stroke or heart attack?

Have you felt chest pain while taking deep breaths? Kidneys

Have you been told you have protein in your urine?

Have you had swelling in your legs and ankles on both sides at the same time?

Blood and Circulatory System

Have you been told you have anemia, low white cell count, or low platelet count?

Have your fingers and/or toes become pale or red or blue, or felt numb or painful?

Have you had blood clotting problems or a miscarriage?

If you have had any symptoms like these, especially if you have had several, talk to your doctor about lupus. Early diagnosis and proper medical care are the best ways to manage lupus.

Muscles and Joints

Have you had stiff, tender, and swollen joints that feel worse in the morning?

Have you had extreme fatigue and weakness for days or weeks at a time, even after plenty of sleep?

Skin

Has your skin broken out after being in the sun, but it’s not a sunburn?

Have you had redness or rash across your nose and cheeks in the shape of a butterfly?

Have you had sores on your skin that would not heal?

Have you had sudden, unexplained hair loss?

Lupus is a chronic autoimmune disease that causes inflammation in various parts of the body. The disease can r a nge from mild to li f e - threatening. Ninety percent of those d i a g n osed 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.

Let's Talk About It Webinar Series

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.

Vice President of Operations & Patient Navigator

Leslie@lupusgreaterohio.org

I’m a registered nurse and have a BSN from Ohio University. My primary role is to help people understand lupus and provide general health education. I strive to build working relationships, solve problems and support patients while they learn how to best manage their symptoms. I started volunteering for the LFA, GOC over 20 years ago. My dedication is driven with a passion to help fight lupus and was inspired by all the people I have met along the way.

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.

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 a jack of all trades and help with everything from database management to marketing efforts to event help.

Mackenna@lupusgreaterohio.org

I’m the marketing manager and creative developer when it comes to strategizing new ideas for Lupus awareness. As a graduate from Bowling Green State University with a BFA in graphic design, I’ve always envisioned utilizing my skills to make a difference. My enthusiasm to help others through design has always been a passion of mine and having the opportunity to share and grow with the LFA, GOC team has been nothing but inspiring.

Victoria@lupusgreaterohio.org

With a lifelong passion for service, I found the Nonprofit Administration program at Cleveland State was perfect for me. After obtaining my degree, I began working with the LFA,GOC. I was truly blessed to start my career learning from this brilliant team of skilled and passionate lupus advocates. After some time away from the Foundation, I am so happy to be back working on this mission. I can’t wait to connect with fellow supporters in the fight to end lupus, and I hope to see you at the next gathering of lupus warriors.

GOC team to help our chapter continue to grow and help lupus patients for years to come.

Community Outreach Coordinator

Aletha@lupusgreaterohio.org

I am the devoted mother of two wonderful sons, they are the reason I fight lupus daily. I share my story everyday hoping that it might help or encourage someone else on their journey. I try to leave lupus patients with these thoughts and that is keep your environment positive in all aspects and do what you can while

Rita@lupusgreaterohio.org

I am a caring, collaborative, and resourceful nursing professional with over 30 years of experience in a variety of roles. I have a BS in Biology and French from John Carroll University and a Doctor of Nursing degree from Frances Payne Bolton School of Nursing at Case Western Reserve University. I am passionate about giving effective and empathetic customer service and education to patients, caregivers, families, colleagues and community organizations. I am honored to be a part of the LFA,GOC and dedicated to providing education, support, and resources to lupus warriors.

Aletha Acree

Leslie Vizcarra

Kathy Holmes Finance Manager

Mackenna Willis Creative Design Manager

Victoria Hornikel Fundraising & Events Coordinator

Rita O. Piccin, BS, ND, RN Lead Patient Navigator /Outreach Coordinator

A Month of Romance

THANK YOU FOR READING OHIO’S LUPUS MAGAZINE! FOR THE MOST UP-TO-DATE INFORMATION FROM THE WORLD OF LUPUS, PLEASE VISIT US AT WWW.LUPUSGREATEROHIO.ORG.

THE FUNDING FOR THIS CAMPAIGN IS FROM AN EARMARK FROM THE STATE OF OHIO AND MANAGED BY THE OHIO DEPARTMENT OF HEALTH.

EMAIL INFO@LUPUSGREATEROHIO.ORG WITH ANY QUESTIONS OR CONCERNS.

GET IN TOUCH!

Lupus Foundation of America, Greater Ohio Chapter

12930 Chippewa Road, Brecksville, OH, 44141

Phone: (440) 717-0183 Toll-free: 1 (888) NO-LUPUS