One Patient's Positive Perspectives

LFA 2013 Walk Registration

Registration & Check in Area

Walk Day

Today, I am sitting here in the shade of a ramada at Chapparal Park in Scottsdale, Arizona enjoying some beautiful spring weather.  I am writing from the registration table at the Lupus Foundation of America (LFA) Walk to End Lupus Now in Scottsdale, Arizona and joining today’s festivities as a virtual walker.  The other (real) walkers took off on the 3.1 mile long course a little while ago.  Today’s walk is much too far a walking distance for my lupus arthritis and joints, and too much sun exposure for lupus sun sensitivity.  Alas, I am relegated to the ranks of sun dodgers sitting here in the cool shade of the registration table.

LFA 2013 Walk Kris from LFA

Key LFA Staff Joined Us

Attendance at today’s walk is impressive!  Key members of the LFA national office staff joined us to support and help with today’s walk arrangements.  Countless participants turned out, so we spent more than an hour checking in a massive crowd of  pre-registered and walk-in teams and individuals.  Including the over $39,000 dollars tracked online ahead of time, today’s fund-raising efforts should net many thousands of dollars to support the LFA.

Many sponsors supporting the walk

Many sponsors supporting the walk

We had several sponsors today helping with costs of putting on the event, including co-sponsor, the City of Scottsdale that donated park access without charge for the event.


Walk T-shirts & Prizes

Also, we had support from AllSup disability representation company, Data Doctors computer services,, Blanco mexican restaurant, screen printed clothing.  Additionally, health partner Arizona Arthritis & Rheumatology Research (AARR), the research arm of a large Arizona rheumatology practice, sent representatives to speak with today’s walkers about current and future lupus research studies.

LFA 2013 Walk Anne

Anne from Glendale, AZ

Today’s walk was a complete success!

As I sat around in my shady oasis, I met several interesting people today.  The first I want to highlight is Anne from Glendale, AZ.  Anne agreed to let me tell her story and told me a little about how her lupus problems have frustrated her over the years.  Her CNS Lupus was diagnosed in June, 1999 on a date she remembers vividly after many years seeking a correct diagnosis.  Before lupus interrupted her career, she worked in and around the Arizona legal community as a court reporter.  Eventually, her central nervous system lupus disrupted her job-related mental skills and triggered her medical retirement.  She began receiving Social Security Disability benefits, and these eventually converted to Social Security Insurance retirement benefits after she reached normal retirement age.  Anne was a joy to speak with and we shared a few enjoyable minutes in the shade chatting.

LFA 2013 Walk Elizabeth

Liz and Friends after the Walk

Also camping out at a shaded picnic table after the race, Elizabeth and her group of close friends and family conversed about their lupus connections with me.

Liz was hospital nurse for many years, until she reached a point where she felt her CNS lupus might be posing a medical risk to her patients.  It was a wake up call when she realized she was using way too many post-it notes “all over her patient’s medical records” to keep track of their information and things she needed to do in their treatment.  She felt her CNS lupus might be a threat to the lives of her patients.

Eventually, Liz retired because of the  essential physical and mental functions her nursing career required.  She shared her amazing story of personal strength and persistence.  Nearby, the family and friends on her walk team demonstrated the genuine and encouraging support circle every lupus patient needs and hopes for.

LFA 2013 Walk Finshers

Finishers Cross the Line

Also, in my shaded corner of today’s walk was Toni, today’s walk chair, as she stood briefly after the walk talking with ex-nurse Liz and David, the Arizona LFA representative.   Tony moved so quickly without stopping I never managed to snap a good picture of her!

Toni is an amazing woman with lupus who eventually retired from her army career.  While serving our country in Afghanistan, acute lupus kidney failure quickly sent her stateside and terminated her activity duty status.  Eventually, lupus led to her medical retirement.


The winning team raised thousands!

Toni’s team brought in today’s highest combined contributions totaling well over $4,000  from over 60 individual donations ranging from $5 to $500 dollars each. Her team’s efforts are an outstanding example of people joining small efforts together to make a great difference!  Her team of sponsors and walkers showed their overwhelming support of Toni and the Arizona 2013, Walk to End Lupus Now.


The day after the walk

The day after the walk…

Now it is “tomorrow” and Sunday afternoon, and I am finally finishing up my summary about yesterday’s walk.


My husband, advice giver and walk volunteer!

Today, I have stayed home from church to rest — in strict adherence to my husband’s wise and persuasive advice.  After yesterday’s walk, I rested all afternoon while my husband volunteered to do our weekly laundry for me.  Today, I feel as if I walked 30 miles yesterday, but all I did was watch a throng of people do all the walking!  I just sat in the shade chatting, taking a few pictures, processing walker registrations for a couple of hours and watching as real walkers completed their course.


Lupus is unpredictable!

Lupus is unpredictable and funny that way.  Sometimes, just having an eventful day is enough to bring on exhaustion and fatigue in its wake the next day.  Today, somebody (lupus!) pulled my plug and I am all out of steam to run my little engine.

Alas, today I am not even the “little engine that could.”  I thought I could, but I can’t!

Thank you, donors!

Last, but not least, I would like to extend a very special thank you to  my family, friends and co-workers who supported me and invested in the Arizona Walk to End Lupus Now, 2013.

More walk pictures…


LFA 2013 Walk Taylor

LFA 2013 Walk Walkers

LFA 2013 Walk David from AZ LFA









Comments on: "Lupus Adventures at the Arizona, Walk to End Lupus Now 2013" (4)

  1. The walk sounds and looks like it was so successful! That is so awesome!! I could relate to the women who had to take a medical retirement as I did the same thing. I didn’t however sign up for disability and now wish I would have. But that is behind me now. It is funny how Lupus works, how it affects the mind, the body, how we can be so exhausted after something simple. I thank you for this blog because I have learned so much reading your blog, things that I wasn’t sure my symptoms was Lupus or not only to find out that it is, which helps me so much cause there are times I think it is all in my head. So your blog so helps me to deal with things much better and to know that I’m not losing my mind completely!

  2. I was at this walk and it was so much fun.

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