Entries in HAWMC (34)


Forgotten Things to Remember.

Often it is the simple things we forget to remember.  As a Lupus patient, one of the symptoms can be "lupus fog", the common term used to describe everything from forgetfulness and memory loss to more severe cognitive dysfunction.  Recently, I came up with a "Lupus Style" way of dealing with my forgetfulness, I starting using the phrase "I fog-got" - not blaming the fog, just explaining it with flair.

Memo reminders are helpful tools.  I have created a bulletin board full of "instructions" for daily life.  I have posted a few of my bulletin board instructions here.  It was Lewis Carroll who said "Begin at the beginning and go on till you reach the end; then stop."  This is a gentle, yet clear, reminder to finish what you start.  I would post this reminder on a tree near the start of a hiking trail that weaves through the woods and leads to a lake -- much like the one featured in the picture behind the quote.

The statement above the Lewis Carroll quote is taken from a greeting card that I bought shortly before my 25th birthday as a type of birthday present.  It says "everything is evolving at exactly the right time - relax and enjoy the adventure."  This quote, much like my mantra from Shakti Gawain, is a nudge to slow down; don't rush the process and savor the journey.  I think this statement would look lovely on the door of a yoga studio-- it says "goodbye" with a smile.

The next proclamation comes from a card I received at a SARK workshop.  After a meditation, the workshop participants were told to inhale and exhale slowly and then to shut our eyes.  SARK walked around the circle of assembled women and when it came to be my turn to select a card,  I did.  This circular card was- and is - still impactful and guides me through life.  "Every situation is an opportunity for growth and healing" if all it takes is setting intention to create postivity, why not believe that every possible situation is one that provides us a chance to grow and expand our wellness.  I would post this card in the e-mailboxes of any newly diagnosed Lupus patients.

Thomas Jefferson accomplished much during his life, including authoring many memorable quotes.  This quote is part of a much larger Vision Board that I created more than two years ago.  A Vision Board is a huge collage of inspiring and empowering images and imapctful quotations on a poster board; yet this quote pops out.  It stands out.  It reminds me to stand fast, stand strong.  Do what is right, stand for truth and justice.  "In matters of style, swim the current; in matters of principal, stand like a rock."  I would love to post this quote on the wall of Anna Wintour.

These are a few things I put out and in my line of sight so I will not forget them.  The forgotten things are the ones to remember.  With use, patience and practice, these are coping skills a Lupus patient can use.  I have become obsessed with this quote, with all of the functionality it is a pleasure to share.  Much like an orchid that requires lots of TLC and then hits a striving point, I appreciate and will happily share any links or treatments which have worked for me. 

Today's prompt for WEGO Health Activist Writer's Month Challenge... The Things We Forget. Visit and make your own version of a short memo reminder.  Where would you post it?


Sleepy Lupus's Madlib for HAWMC!

Sleepy Lupus's Sleepy Lupus

I inspire my dressers and all the doctor creeps rope;

I color my radios and all is sigh again.

(I breathe I lift you up inside my plug.)


The pears go driving out in amazing and creepy,

And bodacious strawberry flys in:

I walk my iPad and all the disease creates carpet.


I cured that you raced me into cat

And crawl me droopy, sleeped me quite dopey.

(I breathe I lift you up inside my plug.)


finger motivates from the toe, torch's games rest:

move tail and paw's box:

I walk my iPad and all the disease creates carpet.


I dreamed you'd speed the way you rip,

But I slice mild and I dice your toy.

(I breathe I lift you up inside my plug.)


I should have chopped a song instead;

At least when baggage drops they shatter back again.

I walk my iPad and all the disease creates carpet.

(I breathe I lift you up inside my plug.)

- Amanda & Sylvia Plath

Here is a link to Sylvia Plath's poem "Mad Girl's Love Song"

Today's prompt from WEGO Health for the #HAWMC ~ Health Madlib Poem.  Go to: and fill in the parts of speech and the site will generate a poem for you.  Feel free to post the Madlib or edit to make it better.


Putting it out there...

When I got the list of #HAWMC prompts from WEGO Health, I knew today's post would be an issue for me. There is no miracle cure for Lupus.  Thinking about the potential that one day, some day, there may be a cure for Lupus gives me hope.  One thing I knew for sure - if I kept up with the WEGO Health 2012 Health Activist Writer's Month Challenge (which I have, that in and of itself is a miracle) I knew I would not be blogging using the WEGO Health prompt.  

"Miracle Cure. Write a news-style article on a miracle cure.  What's the cure?  How do you get the cure?  Be sure to include a disclaimer."

One day a cure for Lupus will be found.  It won't be a miracle, but the result of a huge team effort.  When I was first diagnosed with Lupus 28 (almost 29!) years ago, it had been 28 years since the Federal Drug Administration had approved a new drug for use in Lupus patients.  It took the FDA another 28 years to approve Benlysta.  At this rate, I hope that research and treatments improve the quality of living life with Lupus.

I am part of the team that will help cure Lupus.  That is why I walk to be a part of team that cures Lupus.  One step at a time... I do what I can, which is walk.  I walk for those who can't.  This year, I plan to walk for (and talk about) the Alliance for Lupus Research three times in Los Angeles, New York City and New Jersey.  The first walk is a few weeks away.  I am going to walk in New Jersey at the home of the New York Jets, MetLife Stadium.

Your donation to my team "Lupus Awareness is Fun" could be the donation that helps the ALR find a cure for Lupus and that would be the "real" miracle.  Support my efforts for the Alliance for Lupus Research.  100% of every dollar donated to the ALR directly funds vital Lupus Research.

I need a miracle. Lupus needs a miracle.  Will you donate what you can to help me believe in miracles?


It's My (Dinner) Party!

Choosing the guests for my dream dinner party was harder than deciding which relatives to invite to our "actual" wedding.  Do I have a theme?  Should my dream dinner party have any connection to my health focus?  After spending too much time spent thinking and not enough time writing... I finally made the list.

My Dream Dinner Guests would be: Jim Morrison, Jerry Garcia, Flannery O'Connor, Max Freedom Long and G-d!  Each of these guests represent a part of my life and this dinner party would be a fantasy celebration.

Jim Morrison would be my dream dinner guest if I could only invite one person, let alone five, to my party.  When I was very young, long before Lupus was a part of my life, I would sing "The Doors" songs and feel the magical mystical power of the music.  My dad worked for the band; he and my mother travelled with them on tour.  I want to talk to Jim about his poetry.  I would ask Jim questions about what my parents were like.  I want to know why he left LA for Paris.  Though he was well-known, he was also a friend to my mom and I would want to know if he felt like he was a Rock Star or Shaman or just an ordinary man living under extraordinary circumstances.  Did he feel trapped by the confines of his body?  I would want to eat a meal with Jim because his poetry made me realize there is a way to reach out and touch lives when you choose your words wisely. Jim Morrison said "I like people who shake others up and make them feel uncomfortable."

Jerry Garcia

Jerry Garcia is on the guest list because one of my dreams came true when I got a job as a "Production Assistant" for the Grateful Dead.  I had recently graduated from San Francisco State University and had no plans for the future when the Dead "literally" saved me.  Like the song lyric says: "Without love in the dream, it will never come true."  As a woman with Lupus, I was not supposed to "make it".  My friend Brian Hirsh took me to my first Grateful Dead concert in December of 1990.  After that, the time I spent in San Francisco was not measured in semesters but marked by concert tours.  The Grateful Dead concert experience made me feel alive.  I discovered that I was grateful to not be dead; that if Lupus had not killed me by now, I had better start making plans.  I sent a cover letter and resume' to the San Rafael offices of the band and pursued my dream.  I called diligently and one day I was asked to come in to interview.  Soon, I was working on the graphics for Summer Tour.  When Jerry died, my life was shattered, it was as if I was diagnosed with Lupus all over again.  As it did before, the music led me out of the ruins and showed me the light of melody and "sunshine daydreams".  Jerry Garcia hugged me twice.  The hugs were some of the warmest embraces I have ever known.  Jerry had one of the most contagious smiles I have ever seen; in fact it was his smile that made me come up with the phrase "Smiles are contagious, Lupus is not."

Flannery O'Connor once said "All my stories are about the action of grace on a character who is not very willing to support it, but most people think of these stories as hard, hopeless and brutal."  Flannery O'Connor knew first hand that life is hard, hopeless and brutal -  she died of complications from Lupus three years to the day before I was born.  I would want Flannery O'Connor to be my guest at dinner because we have a bond as women who struggle with Lupus, but at dinner I would not want to discuss Lupus.  I would want to discover the secrets she had for finding depth in her writing.  I struggle with writing a simple blog post even with modern conveniences and alternative therapies.  How did Flannery get it done-that's what I would want to know.  Have you read her collection of short stories "A Good Man is Hard to Find"?  It changed the course of my life!  Her writing style captured my attention and everything that she wrote keeps me enthralled.

Link to Flannery O'Connor's home:

Source of the Flannery O'Connor quote:


Max Freedom Long was a research scientist who became one of the foremost authorities on Polynesian religion.  He was someone who studied the Kahuna lifestyle and wrote about Huna, the "hidden secret" in his books.   He explored Huna throughout his life and he openly shared his experiences in the books "The Secret Science Behind Miracle", "The Secret Science At Work" and "The Huna Code in Religions".  I recently started reading "The Secret Science of Miracles"and wish that I could share a meal with the man who wrote it.  

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The idea of a dream dinner got me thinking if I could share a meal with anyone, I would choose the omnipotent almight G-d.  I am not a religious person, but I have a strong spiritual base and if I could, I would meet Adonai... I am not in a hurry to do so but if it were for one meal we could enjoy some delicious food and yummy treats.  It makes sense - if I am having my dream dinner party with Jim Morrison, Jerry Garcia, Flannery O'Connor and Max Freedom Long that G-d would be there, too.  

It's My (Dinner) Party... would you RSVP?

The prompt for today... 5 Dinner Guests. Who are the 5 people you'd love to have dinner with (living or deceased) and why?  ~ There were no rules about potent or omnipotent... 


A ripped page in the book of Lupus!

Ripping a page from the book of Lupus...  Finding out that one of my Lupus friends is in the hospital is something I will never get used to.  It does not get any easier the more it happens.  I feel as if I have been sucker-punched in the gut.  Being a part of the Lupus community, it (the hospitaliztion of a friend) is unfortunately a fairly common occurence.  Hardly a week passes without seeing a Facebook status update asking of well-wishes or prayers for one of us.  Today, I have two friends (Lupus sisters, actually) who are in the hospital and these two strong women -who live with Lupus- have been on my mind all day.  Their challenges are my challenges. Though I am currently in remission, I have been hospitalized more than a few times to deal with the more severe Lupus symtpoms.  

It is a scary and fear-inducing journey that a patient experiences when going to the hospital.  First, you enter Urgent Care and the nurses and doctors look at you as if you are crazy simply because you are not gushing blood with bone exposed through the skin.  I get that my Lupus symptoms may not be visible on the outside, but something is wrong or else why would I be at Urgent Care?  Finally, you get a bed in the Emergency Department of the hospital.  Depending on the medical team, the care or lack thereof depneds on what hospital you go to.  At some point, usually three or four hours later, the doctors and nurses determine that you should be checked in because they either need the bed or want to pass you off to the specialists because none of the treatments are working.  You soon find yourself in a tiny hospital room with no personality and a fake flower.  Then it seems like there is no hospital communication because I have to tell the new doctor why I am here. He (or she) then looks at the chart and says "Oh, I see."  (Seriously, you could have read the chart before you enter the patient's room.)  The hospital stay differs depending on what is going on within you and how Lupus chooses to manifest itself.  However, I can tell you that I know what it is like to look like a healthy person who has Lupus and be hospitalized.  In the early days of living with Lupus no hospital staff would touch me - and they made such a production out of putting on the latex gloves and mask. The memories of those hospital stays flood my head when I think of one, let alone two, of my community of Lupus sisters that are not feeling well and unfortunately in the hospital.  

If I were to take a page from "Lupus" (the non-existent book), the random page phrase would read "Lupus sucks!"  (Excuse my language, the vocabulary words of my choice are not suitable for gentle readers.) My posts on this blog are usually positive and upbeat, but today I just can't force the happy.  I had a good day in terms of my ability to control my pain while tackling my to-do list.  I found out, online of  course, that not one but two Lupus friends/sisters/warriors are in the hospital.  It is 2012, I have survived and thrived despite my Lupus.  I wonder why can't the medical professional help all Lupus patients manage their condition?  Why can't we find a better way to treat these (the Lupus community's most vulnerable) patients and discover the cure for Lupus?

I know that I am doing everything I can to help raise Lupus Awareness but it doesn't seem like enough. Not hardly enough.  I am walking the shore at low tide and throwing starfish in the ocean. 

Sending healing thoughts, warm hugs and a contagious smile for a quick path to my friends in the hospital and to whoever needs to find wellness.


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