Living With Lupus: Our Stories

Before diagnosis, Andrea and Miguel lived a very active, free-spirited lifestyle.
They had just moved in together when Andrea was diagnosed with lupus. Getting the diagnosis as their life together was just beginning created a special challenge. Andrea felt unsure at first if Miguel would want to stay with her under the circumstances.
Andrea lost a pregnancy during a period when her lupus was active. It was a difficult time, but they still hope to have children and believe it will happen when the time is right. In the meantime, they’re focusing on their careers.
Andrea speaks of how her editor at the Spanish newspaper suggested she share her story with readers.
After the piece ran she got about 100 calls and e-mails. She ended up contacting everyone with the idea of starting a support group. They now meet on a monthly basis and it’s been gratifying for Andrea and Miguel to see how much the various members get out of it, and how much they get out of working together to help others with lupus.

Cathy loved to spend time outdoors, so when she got a rash across her nose and cheeks, she didn’t think much of it. But she was also experiencing joint pain and fatigue, and finally went to the doctor and was ultimately diagnosed with lupus.
Howard speaks about how dealing with lupus is really a team effort. Because Cathy tends to ignore her symptoms, he’s the one who reminds her about doctor’s appointments, finds her doctors, etc., and she appreciates his efforts.
Cathy speaks about being thankful that she has the energy and ability to still do much of what she wants to do (for example, play golf) and how it might take effort but you can’t give up the things you enjoy doing in life.
Cathy tells the handicapped parking story, and how important humor is to her in dealing with lupus.
They talk about being involved in lupus events, how they brought the Lupus Walk to Raleigh, and how gratifying it was to see people coming together as a community to support people living with lupus.

Howard describes how he first met Cathy when he hired her to work at his insurance company.
He talks about how dealing with lupus is really a team effort, and that he is a big part of the team involving many different physicians.
Because Cathy tends to deal with her symptoms by ignoring them, Howard is the one who reminds her to take it easy and get to her doctor appointments. He doesn’t worry about being a nag, because the important thing is that she takes care of herself.
Howard gives advice to spouses of people newly diagnosed with lupus, and encourages them to take an active role in their spouses’ lupus management.
Cathy praises Howard’s patience, and Howard sums everything up by remarking on the give-and-take required between him and Cathy.

Before diagnosis, Kathy lived a very active lifestyle, and loved to travel and cook.
One day she had bleeding sores in her mouth and went to an urgent care facility. They sent her to the hospital, where she was diagnosed with very low platelets and given a transfusion. Three weeks later she was diagnosed with lupus.
She wasn’t able to keep the job she had at diagnosis, but was able to find another job with more flexibility. She feels that there’s strength in being able to reinvent yourself.
She went from being a caretaker of the family to someone needing care. Her children are very supportive, doing household chores and making sure that she rests.
She’s very close with her sister, Veronica, who is there for her when she needs someone to listen, and believes her when she says she’s too tired. She feels that kind of support is invaluable.
Veronica speaks about respecting the days when Kathy is down, and loving the days when she’s up, and how you have to treasure each moment.

Before diagnosis, Linda was extremely active, loved to climb mountains on the weekends and have fun with friends.
When she started having symptoms, she thought she was depressed and went to a psychiatrist. He recognized it was a physical ailment, and eventually she was diagnosed.
She was shocked and fearful thinking she was going to die. Then she spoke to a college professor with lupus, and learned that you can still have a full and productive life despite lupus.
One of her biggest supporters is her friend and coworker, Kerri. Kerri checks in with her regularly, asks how she’s feeling, and lets her know if she looks tired.
Kerri is amazed by Linda’s strength and spirit, and by the fact that she can work numerous hours a week, run her taekwondo school, and still be an inspiration to others.
Linda acknowledges the difference that Kerri has made in her life, to which Kerri states simply, “That’s what friends are for.”

Nicole was an extremely active person, working 50 – 70 hours a week and spending a lot of leisure time going bowling and dancing with friends.
She was diagnosed with lupus when she came down with what she thought was the flu, but she wasn’t getting any better. She was diagnosed several weeks later.
Nicole talks about her husband’s family, and how they’ve had a hard time understanding her condition. When she had to cancel coming for Thanksgiving, they thought she just didn’t want to come. They’re slowly coming to understand, and now will make accommodations for her (like giving her the downstairs bedroom) when she visits.
Nicole talks about how she communicates openly about her lupus, and feels it’s important to spread awareness so people who might have lupus will get diagnosed earlier.
She speaks of how supportive her husband is, and how they are unable to have children and so are looking into fostering and adopting.
She wraps up by speaking of her change in attitude from Negative Nellie (as her friends called her) to the positive upbeat person she is now. She credits lupus for that change.

Before her diagnosis, Persha was very active, and when she started having symptoms thought she was just overdoing it.
She and her husband have learned to adjust to lupus by being open with one another. She tries hard to verbalize how she is feeling so he can understand, and he helps her by researching lupus, making sure she eats right, exercises, and takes care of herself.
She speaks about being a mom of a young child, and how sometimes she doesn’t feel up to playing with her son when she comes home from work. She manages by finding less energetic activities, and making up for it on the days when she feels better.
She talks about her beading and jewelry design business. It’s great therapy for her, and she donates part of the proceeds.
She’s hopeful about the future and wants to be an inspiration to others by advocating for people living with lupus.

Regina was a very active person—an Army duty nurse and mother of a 4-year-old—before being diagnosed with lupus.
The diagnosis put a tremendous strain on her marriage, and she and her husband divorced.
Because she was in the hospital so frequently, she developed a system with her parents where they would bring her daughters in, and they would go on “virtual vacations.” She would read to them about different countries, and then when she’d get home they would decorate and make foods from that country. Her kids consider those fond memories to this day.
Regina’s sister Rita has been her “angel,” often flying in to help, and even taking her son out of school for a month so she could be there for Regina. Rita is amazed at Regina’s positive perspective.
Regina speaks of not being defined by lupus, and that things can get better. Her faith provides a strong foundation for her, and her many volunteer activities have helped her to feel better and live well. Despite her trials and tribulations, she approaches each day with hope and gratitude.
Rita recalls how Regina spoke of and praised her family support, but Rita feels that with all she has to deal with, Regina is the shining star.

Rena lived and breathed dance in high school. When she first had symptoms she tried to push through, but eventually she had to quit dancing for a while, and it was devastating.
In 2001 she developed a build up of fluid in the heart and was hospitalized. She was very ill, and at one point gave up hope that she would get better.
Then her mom called, and put her 2-year-old daughter, Amaris, on the line. Amaris was screaming, “I want my mommy!” Rena realized at that point that she had something to live for. The next day, the doctors were amazed at how quickly she had improved.
Rena talks about her relationship with her daughter, and how Amaris helps her around the house, makes her laugh, and helps motivate her. Amaris explains some of the ways she helps her mom.
Rena also talks about the prospect of Amaris someday coming down with lupus, and her hopes for Amaris’ future.

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