#91- Profiles in Lupus: Kathy Walters Pays It Forward

In the October of 2002, at the age of 44, Kathy Walters received a wake up call that would set her on an unexpected journey.

She was diagnosed with systemic lupus.

Kathy describes herself now as a homemaker, wife, mom, and grandmother. Before her health decline, Kathy was a small business owner in Modesto, California.

Full of energy and talent, Kathy has that enviable talent of being able to create without use of pattern. Confidence, and the vision to see what is not there now serves her well as she has been making a new life that can work around the lupus.

Before the lupus took center stage in Kathy’s life, she had found a way to make her passion for creating beautiful things into a livelihood. In the 1980’s, Kathy was the owner of The Country Peddlers Gift Shoppe.

Her online business, Mother Earth Gifts, was formed in 1999 as the fatigue from the as yet undiagnosed lupus took its toll on Kathy’s ability to continue working with the machinery used for her wood crafts.

And the lupus has robbed Kathy even of this online business.

Her world has been tipped askew.

Lupus has made Kathy adapt in ways she had never planned.

In the process of letting go, Kathy has created a safe harbor for those with lupus by creating the online community:

www.LupusMCTD.com

She calls her efforts “Paying it forward… giving back to lupus patients and their families.”

This is her story.

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The first suspicions that something was seriously wrong with Kathy’s health occurred in April of 1975.

Kathy was only 16 years old.

She had convulsions which were described as having “unknown origins”. Kathy was started on anti-seizure medications, Dilantin and Phenobarbital.

During this disease onset, Kathy also suffered with high fevers and frequent bouts of pneumonia. She missed so much school that she did not graduate.

Kathy felt “ashamed and embarrassed” about this health problem. So when she met her future husband, Dave, she did not initially share with him her private struggles.

Dave soon learned quickly about Kathy’s health problems when Kathy had a grand mal seizure a month after they were married.

As usual with seizures, Kathy was “out of it” for the next four hours. When she came around, Dave was there. Kathy told him about the seizures and states:

“…he had tears in his eyes and said, ‘It was OK to tell me you had them [the seizures]. I love you for you and if that means I'd have to love your seizures, then I love them because it's a part of you."

Kathy and Dave have been married now for 30 years. And they became parents to a son and daughter.

Dave was very supportive of Kathy as her health gradually declined. She began suffering with the migraines and irritable bowel syndrome (IBS).
I had asked Kathy to talk about what it was like coping with IBS. This is a challenge for a number of us with lupus, but a condition that we so rarely discuss.

Kathy shared that her condition was so bad that she would need to pull over to the side of the road when traveling. Dave was sensitive and protective of Kathy. He would shield her so she would have privacy, provide tissues, and make sure she was okay. Dave was able to understand how embarrassing this was for Kathy. They learned to plan trips closer to home and to map out longer trips to make sure they could locate restrooms along the way.

The well known lupus fatigue hit Kathy when her children entered their middle school years. Dave became Kathy’s “voice” in advocating for her with doctors. Dave also helped Kathy by teaching the children to help out around the home, keep things quiet when she was seriously ill, and to protect their mother from stress that exacerbates lupus symptoms.

Kathy shared that her children quickly learned to adapt to Kathy’s worsening condition.

By Junior High, her children were able to recognize when Kathy was having a bad day and to adjust their after school plans accordingly. Her daughter would tell her friends “I’ll talk to you later.” Then both children would help by bringing Kathy 7UP, crackers, medication and a wet washcloth for her face. Kathy’s daughter volunteered to hold Kathy’s hair when the pain caused Kathy to vomit. Her son would close the curtains to the windows to keep the rooms comfortably dark.

(People with severe migraines suffer intense pain from loud noise and light.)

Kathy reports that :

“If I am sick, they [family] respond and do everything they can to help me to this day. But if I ‘look and act normal’ then we all live a normal live day at home.”

On the Path to a Lupus Diagnosis:

Kathy first realized that her health problems were serious in 1985.

Kathy’s beloved sister, Sheryl, died of Polymyositis. This is a condition frequently associated with Mixed Connective Tissue Disorder.

Polymyositis often overlaps autoimmune conditions such as lupus.

In her grief, Kathy turned to medical books to try to understand what had happened to her sister. Kathy’s fatigue increased significantly during this time.

Kathy’s migraines became unbearable and she had to make frequent trips to the Emergency Room. Her health problems were considered to be the result of “stress” or “hormone related”.

Kathy kept hearing the word “lupus” pop up.

Lab results showed nothing significant until 2002.

Kathy received a confirmed lupus diagnosis in October of that year due to her ANA lab results taken in conjunction with the other symptoms she had presented with over the years. Her neurologist and Primary Care Physician (PCP) finally agreed that she had been right all along.

And that is a long time to suffer through the humiliation of not being taken seriously by medical professionals.

So upon receiving the confirmed diagnosis, Kathy states:

“I was happy. I know this must sound strange to some, but I was so happy I called everyone. I was tired of trying to show and prove to Doctors what I had been living like; I just needed proof to them so I could get treatment to feel better.”

And thus explains Kathy’s deep empathy for those waiting for a confirmed diagnosis, and those with Mixed Connective Tissue Disease who may never receive a confirmed diagnosis.
But, having lupus is not easy.

And Kathy has shared that she misses the energetic woman she used to be. Kathy misses the ability to be able to help others by being physically present. Her illness has left her barely able to tend to her own household.

Kathy also misses the social contact of running her own business.
The computer has been Kathy’s life preserver as she has made her way in learning to cope with lupus.

Kathy has started creating her original designs on the computer. She has taken the patterns that she loved so much and is putting them together into a CD to share with others. She also has been making “Do It Yourself” sewing packets that come complete with the pattern and all the materials needed to make Kathy’s favorite Raggedy Ann dolls.

More importantly, Kathy discovered that the computer is a lifeline for the chronically ill.

Kathy describes her transition into using the computer as:

“ Letting go, I learned to use the computer to create a new way of still using my talents and be able to continue making money at what I love to do. It's not the finished product, but I create from start to finish patterns, photographs for a CD with instructions for others to be able to create dolls

Letting go has just allowed me to expand my talents in other areas... the computer.”

And Kathy found a lupus support network online.

Kathy had been participating on AOL’s Lupus Message Board. Kathy saw some needs that were not being met, though, and eventually came up with a better design that would meet the needs of others like herself.

Kathy’s website features an information library that is easy to access. She also has a design that allows readers to change fonts and size for easier reading. Kathy has access to a wealth of information that is easily available to participants on her website.

Her goal is to get that information out there to the public.

A typical day for Kathy starts with checking online to respond to e-mails and questions. She makes it her number one priority to try to respond to everyone before the end of the day by checking online again at night before she turns off her computer.

During the day, Kathy likes to get creative with the website. Recently she has added live chats, and a filmloop that shows photos of actual symptom manifestations.

I asked Kathy if there is anything she would like to add to the website… what is the next step.

She jokingly responded live video chat. She has been tinkering with the idea though… and if it is possible, Kathy is certainly up to the task.

Kathy’s hope for LupusMCTD.com is:

“I would LOVE to be able to get each visitor to either make a post, if not, at least sign the guestbook, so we have a general geographical idea where they are from. I created maps to track visitor & member's IP Addresses on a map powered by Google. With that and our Face of Lupus Film Loops, we become more than a screen name, we are human and we are real. “

I asked Kathy has she ever had the “WHY ME?” question that so many of us face in time of crisis. Here is Kathy’s response:

“I have thought of this one many times when I think, ‘Why me?’
Then I think, ‘Why not me?’

If it were not for this all happening, I wouldn’t of met the wonderful people I have met via Internet, I wouldn't of created the website to be able to help others.

I lost 2 of my sisters and without them and now my parents are gone, I have Dave and the kids in my life.

That's it.

But I can say it with tears in my eyes and a happy heart,

I have true caring friends who understand what my physical health problems were, still are, and will continue to be.

That is why I think I have it for.

Otherwise, I honestly don't know where I'd be during the day.

I try to think about it, I no longer physically have my family members here, I always used to spend time at my parents and at my sisters doing for them. (decorating, baking, things family members do)..

And now with the invention of computer technology, I can be a help and friend to others like a family, as we all share one thing in common. Something not even some family members understand what you are going through. “

And so Kathy “Pays it forward”.

Through years of challenges and loss (most recently her sister in June 2005), Kathy continues to be who Kathy always has been…

an innovative, caring, woman with a “can do” spirit that resists the bonds of lupus.

VISIT KATHY’S WEBSITE (don’t forget to sign the guestbook!) at:


www.LupusMCTD.com