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More than a support group
Walking into the restaurant the ladies welcome one another with hugs and questions about husbands, pets and grandchildren.
To watch them from afar, they appear to be a group of dear friends getting together to reminisce – and really that is who they are. But the common thread that has tied these women together is pain, physical pain.
Officially this is a lupus and fibromyalgia support group. Unofficially, it’s close-knit group of women who share a experience that only one another can empathize with. “It’s comforting to be around someone who – when I say ‘lupus’ – they understand what I’m talking about,” said Jonnie Moon, a longtime member of the group.
The group started out in the late 1980s, when Ronald Reagan was the U.S. president.
Delrece Moore is an original member of the group. After a doctor diagnosed her with lupus, she got busy looking for information about the disease. “What you heard about lupus was pretty dismal back then,” she said. But Delrece is a positive person and a do-er. She got busy taking classes through the Arthritis Foundation and going to the affiliated support group. And because Moore is a do-er, it wasn’t long before Delrece was facilitating the classes and running the support group. Over a few years, the Arthritis Foundation’s presence and focus in Colorado Springs changed. All that was left standing was the support group.
The women had grown to enjoy each other’s company and found solace in the group. On their own, with Delrece and Shirley Coston providing leadership, they came together for a monthly lunch. That’s the way they’ve been operating for more than two decades.
Some members have moved, new members have joined. They even expanded to welcome people who are suffering from pain from fibromyalgia, or really anyone with autoimmune issues. Each month there’s 10 to 15 people.
In addition to friendship, Delrece said hope is something she gleans, and hopes others also take from the group.
“Before I had lupus, I enjoyed my job. But, I couldn’t keep up with it. It was just too much,” she said. “I had to take a step back, quit my job and go on disability.”
Back then, she said, “I felt like my life was coming to an end. But what I’ve learned since then, over the years, is that when one door shuts, new ones open. There were things that I had wanted to do, but I didn’t have the time. This provided the opportunity to explore those interests and meet new people. Look where I am now.”
About 10 to 15 people meet for lunch and support each month.
Jonnie joined the group about 20 years ago when she was first diagnosed. Her nurse recommended she check out the support group. There Jonnie met Delrece, her “teacher and mentor,” and other women who would grow to become her lifelong friends.
“We’re a special group,” Jonnie said. “We’ve grown together and cried together. When no one else understands your pain or the daily struggles that come with a chronic illness, these people do.”
Because chronic pain and disease is what united them, they’ve comforted one another in times of bad flare, dark moods, periods of being bedridden and even death. About eight members have died from complications of their disease.
“We know it’s a part of life,” Delrece said. “But we grieve. We grieve like we’re grieving a family member. When our friend Shirley Coston died we went to a coffee shop with the intent of simply remembering Shirley. We talked about what we loved about her, what made us laugh and reminisced about old times,” she said. “We help each other to heal.”
And the following month, they scheduled their monthly lunch, because that’s what they do. They move forward and share the highs and lows of what life has in store for them.
“You just keep going,” Delrece said. “I’m the cheerleader. I got to be up and energetic. I can’t let myself go to pot. You can’t quit when life gets hard. You got to move forward and that’s what we help each other do”
Thanks to ALA!
The event was held earlier this month at The Golf Courses at Hyland Hills.
Attitude makes a difference
Dear Gentle Readers,
Sometimes the story of having lupus isn’t really about you. It is about all that you have learned in dealing with this chronic illness.
During the course of having lupus, I have learned that a positive attitude is so important, maybe the most important thing you can do to cope with your illness. A smile on your face when you feel crummy goes a long way toward improving your mood and shows the people around you that you are trying.
Saying “no” at times is also very important. We get caught up in our daily lives and the lives of others and find ourselves giving more than we are getting. We have to say “no” sometimes to put balance in our lives and to be able to do the things we have to do. That way we are adjusting our lives so that we don’t exhaust ourselves and can deal with extra burdens as they come up.
We have learned so much in dealing with lupus that when a loved one or friend gets sick, we can help in many ways. Now I don’t mean that we can become para-medical people because that would be a great mistake. We are not trained to give medical advice nor should we attempt to do so. But we can share what we have learned with our sick loved ones who have been dealt the burden of illness when they have been healthy, active people until now.
A large component of illness is depression. “Why is this happening to me?” “Why can’t I do all the things I used to do that I love to do?” “Why am I so tired?” “I don’t like myself the way I have become.” You can respond by telling the person to get some pills. Or you can say that they should go to a therapist. But the more important thing is for them to get over this “funk” and start to live their lives again as best as they can.
One friend said to me, “I can’t go on long walks anymore.” So I told him to try to walk to the mailbox. If that works, then walk to the corner. Try walking a longer distance every day. Don’t worry if you have a setback. Start over. He liked that idea so he tried it. One day he called me and said, “I just walked for ½ an hour. I feel great.” “I’m so happy for you,” I said. His mood had changed. His spirit was lifted. He was starting to get over the “blues.”
One day he called me and said, “I walked an hour.” “How was that?” I said. “I felt awful. It was too much for me. I’m not going to walk anymore.” “Oh, please,” I said. “You just need to slow down. You can’t do as much as before you got sick, but you can do something. Cut back a little and see how it goes. It worked. He is now walking about ½ hour most days and enjoying it.
There are other ways you can share your experiences and help your friends and loved ones on their journey. Keep checking on them. Encourage them. Share your experiences with them as they relate to their needs. You can be very helpful yet not intrusive.
Until next time …..
©2013 All Rights Reserved Anita Fricklas
Lupus Colorado loses a friend
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight. ~Kahlil Gibran
The staff and members of the board of directors of Lupus Colorado are sad to report that board member Kris Wenzel passed away peacefully on Aug. 2, 2013 at her home in Arvada at the age of 63.
“We were heartbroken to learn of Kris’ passing,” said Carol Wright, Chair of the Lupus Colorado Board of Directors. “She had a good heart and it showed through her health care work.”
Kris had served on the Lupus Colorado Board of Directors for six years.
“Kris was a wonderful person and an asset to Lupus Colorado,” said fellow board member Brian Bates. “It was an honor to serve with someone as dedicated to health issues as she was. Her insight, wisdom and wit will be greatly missed.”
She married the love of her life, Francis Wenzel in 1971 and together they enjoyed 42 years of marriage. She was a loving wife and mother and nurturing sister and grandmother, and had a great love for her family and friends.
She had a love for baking that she inherited from her mother, and her sweet treats were enjoyed by friends and neighbors alike. Kris was a well-respected member of the nursing community locally and across the nation. She was a leader in the community, serving on the Boards of numerous professional and non-profit organizations.
In Honor of Loretta Brooks’ Retirement Iris Agins
In Memory of Laura Anderson Gary Anderson
In Memory of Lois Dorothy Gerken Dick and Clara Newton
In Memory of Brennen Oliver Tony Peterson
In Memory of Jack Sayers Bobby and Eleanor Baker Linda Condron Nancy and David McGoldrick Carolyn and Robert Scavo Roger and Betty Sebenik Patricia Wilder
In Memory of Susan Sayers Patricia Wilder
In Memory of Patricia Sireno Joseph and Julie Haralson Eugene and Lorraine Koehnke Leonard and Rita Lucero John and Elizabeth McGrew Robert and Linda Meininger
In Memory of Kris Wenzel Judith and Robert Hiester Skip Schlenk CHAMPS – Community Health Association of Mountain/Plain States
by Sandy Kanowitz
What could be wrong? I’ve never been ill, Haven’t been hospitalized, Rarely need a pill.
Now all of a sudden, I’m sick all the time, My Doctors are puzzled, There’s no reason or rhyme, To all of my symptoms, That wax and wane, Every system is involved, They’ve become quite the bane, Of my existence of late, Some think I’m insane,
I’m in pain and tired, All my time I spend In appointments or bed, My Dr’s at wits end.
I feel so terrible, I can’t work or play, My days are long, At home I stay, Wondering what’s wrong, combing the internet, Trying to figure out, What awful fate I’ve met. Maybe you can do it- Figure it out, No one seems to know, What this is all about. So here’s my list, Of symptoms and signs, What happens to me,
Physical and lab finds: My brain is a blur, My head often hurts, My hair has been halved, My jaws are jammed, My skin is scarred, Lymph nodes are lumpy, I have frequent fevers, My arms and legs ache, No end to exhaustion, Lungs clogged with clots, Then there’s pleurisy pain,
My kidneys are kaput, My belly is bloated With a gaseous gut, Spinal nerves are strangled, From degenerative disc disease, White cells out of whack, With intermittent infections, I get humongous hives, And the itching’s intense, Platelets have plummeted, Purple petechiae popping up,
As you can see, I am quite a mess, It’s all a big mystery, Want to take a guess? It’s not fibromyalgia, Or the ubiquitous IBS, Nor is it all in my head, As some docs might suggest.
You’ve got it, of course! I’ve been such a dufus? It’s clear as a crystal, I’ve got systemic lupus!
Sandra Kanowitz, MSN 08/13