This project was suggested by Maria. Instead of paraphrasing, I’ll just copy and paste what she had to say:

Hi Julia!
It’s wonderful to see an option for us right-brained types to explore the creativity that lupus can inspire in us. We are often so overwhelmed with the left-brained, techinical and structural things that managing illness can require that we forget to feed our spirits…or refuel them. Thank you for offering up this opportunity.

I’ve been trying to get people to jump in with more visual and creative methods of coping all year. First one being along the lines of a “wordless Wednesday” caption entries and my latest one was inspired by Saul Steinberg’s word using paper bags. Here is the link to the post for your consideration: http://mylifeworkstoday.com/2010/09/06/incognito-no-more/ . Some people prefer the anonymity that the bags offer…I hope it simply gives them a chance to reflect their lupus with a little more input into how they want to share their experiences with others.

Wishing you the very best~

So the project is very simple:

Image courtesy of My Life Today

1. Grab a paper bag. Make sure it is paper and not plastic.
2. Illustrate on them in, any fashion, to represent your invisible illness(es). You can list as many or as little of them as you choose.
3. Take a picture.
4. Submit the picture along with any accompanying story you’d like to share.

Once you are finished your paper bag, please email the accompanying media to lupus@juliasherred.com. Please try to have all finished projects into me by Midnight PDT on May 8 for the World Lupus Day update on May 10, and Midnight PDT on October 28 for Lupus Awareness Month updates. If you have any further suggestions for song ideas or questions, please leave them in the comments or email me at the email address above.

To view other projects I worked on, click here.

To view other projects submitted by Kevin, click here.

BETTER DAYS

The best thing living in a maze
Around the corner there are better days

Feeling good means more to you
Than it ever could for those who never knew
The pain it takes to understand
Relief from pain you never planned

But you’ve found a way to make it through the day
To make it through the maze of you
Your mind and body
Straining through and through

But your battle’s not with me
So I cannot set you free
From this purgatory
All I can do for you

Is to give you something good to think

The best thing living in a maze
Around the corner there are better days
The best thing about being down
There’s room to lift yourself off the ground

And when you feel lost in the maze
I’ll give the gift of straightaways

Pain is the feeling of winning the fight of your life

Here are Heather’s words about this image:

It has only been this year that I have come to know anything about Lupus other than repeated references in the TV show House.  Learning about how devastating it is, hearing how much it has robbed from vibrant, amazing people has really affected me.

This picture represents my impressions of what it must be like living with Lupus – murky, shadowy and mysterious around the edges, and yet somehow in the center there is a brightness or a hope you hold on to that keeps you going.  This is only my impression from the outside, because I don’t think I can ever imagine what it is really like to have Lupus.

To view more submission by Carson, click here.

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To view other projects submitted by Stephanie, click here.

I don’t have lupus, and have never met anyone face-to-face “IRL” who does. But since learning about the disease, I’ve begun to take awareness of it very personally. I don’t know why, precisely; I assume it’s because I’ve heard it described a lot as an “invisible” disease, and I know how frustrating other invisible diseases can be. Regardless of the reason, starting with Jules’ Lupus Awareness Day virtual gallery back in May, I’ve wanted to help literally any way I could.

Back in May, I decided to participate by making origami butterflies for the 1000 Paper Butterflies project. I used my free time at work to fold quite a few of these; a handful of residents were at first curious, then after I explained what I was doing they also helped me make the butterflies. This month, though, I was concerned about what I could do to contribute to the gallery, as my artistic skills more-or-less end with butterfly folding, and without personal experience with lupus I don’t have any direct stories I could share.

After thinking about it for much of August & September, I did some research into nonprofits and other groups that supported lupus research and education. Since I didn’t want to just make the same butterflies again, I took a slightly different approach to the October contribution for the gallery:

While I didn’t receive any butterflies to send in with this letter, I did receive donations—a total of $87.40 donated to the Lupus Foundation of America in less than two weeks. Both residents who did and those who weren’t able to donate at the time took copies of lupus fact sheets I’d prepared, and quite a few of them seemed to know someone directly or indirectly who had lupus, even if they didn’t understand what lupus was. I know it’s a lot to hope for, but so long as just one of those people came to better understand how those they knew are affected by the disease, then I’d feel like I made a difference myself.

As for the total donation, it was made to the LFA on October 20^th in Jules’ name, but it really goes in honor of everyone who lives with lupus. I’d hoped the letter from the organization would reach Jules in time for the submission deadline today, but I don’t think it’s going to. Nonetheless—the staff & residents at my property are thinking of you specifically, Jules, as well as of those they’ve known themselves who are fighting against lupus. Our submission for your gallery doesn’t qualify as “art” but we’ve done what we can to spread awareness and to educate those around us—perhaps those people, in turn, will find a way to educate those around them.

~Stephanie

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It Was Not My Precious 18 Year Old Daughter Ashley That Was of Supposed To Die, It’s Me I have Lupus

I will never forget going to my Internal medicine doctor in June 2000 and telling her I felt so bad and I had symptoms I never had with Fibromyalgia and I didn’t know what was wrong all I knew was something was wrong .  Was really wrong with me. I never hurt or felt so bad before. I had pain all, that would not go away. My feet and hands were numb plus they felt like pins and needles sticking me, extremely tired. I engaged in daily activities and exercise every day to help with Fibromyalgia but I didn’t feel like walking or exercising like I had done just about every day for years which really helped the symptoms of fibromyalgia. The  joint and muscle pain was so bad that prescription pain medication couldn’t even control it, I had migraines headaches, depression, and anxiety and panic attacks and  Memory loss, my hair started coming out, I had  sores  all in my mouth that really hurt. I had one thing that happened to me that I have never seen written I felt like things were moving inside of me.

After a month of testing I got that call on a Tuesday night from my doctor at 7:00 PM that I had Lupus and she said I am sorry to tell you this. I didn’t know what Lupus was but it didn’t take me long to find out what it was and how it changed my life. It affected my kidney, I have vasculitis, my thyroid quit working correctly so it was hypothyroid, swelling (edema) in feet, legs, hands, and/or around eyes, butterfly-shaped rash across cheeks and nose, my painful or swollen joints only got worse. I have pain 24/7, I do not think they are related but I had 3 back surgeries. One thing I never hear about is I use to get my teeth cleaned every 6 months and rarely had problems now I get them cleaned every 4 months and I am always needing root canals, crowns and fillings because I have Sjogren’s Syndrome which makes my eyes and mouth dry I drink water and eat sugar free mints and still have all these dental problems. I have more problems from Lupus but I can’t list them all.

Then comes the worst thing, yes worst then Lupus worse than anything that could ever happen my daughter Ashley was killed along with her friend by vehicular homicide as they were both passengers. I still have to deal with all the pain from Lupus but that is physical which is awful but mentally, losing Ashley is by far the worst that could ever happen to a parent. Why Ashley she was only 18 and had her whole life and here I am in horrible pain every day and it was? Ashley that died it should have been me, her Mom I have Lupus and she was my young little girl.

The only thing I can do is I believe in God and Heaven and I know she is there and just like Romans 8:18 says. Romans 8:18: For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us. Even though some days I can’t even walk and all I can do is lay down with a heating pad to try and get some relief, I know God does not make mistakes but WHY DID HE TAKE Ashley and not her sick Mom. I am on disability, I got fired from my Accounting Manager position I held for 10 years with ‘Digestive Healthcare of GA and had to go on disability. I needed to go on it but had to support 2 children by myself so I went to work and worked hard every day. I should have filled for disability and not felt I had to be loyal so I could have gotten disability from the company and Social Security so I would have enough to live on.

Well this task is now complete. These curtains comprise of: 40 strings, 25 butterflies per string, 7 coat hangers with 6 strings per coat hanger and 1 coat hanger containing 4 strings.  The finished result is amazing. Click on each of the thumbnails to view.

To view more projects submitted by JoAnn, click here.

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You can read the lyrics below and listen to the song above. If you are viewing this in an RSS reader, you’ll need to visit the site in order to listen. To download this song for free, right click and save as.

It’s Time (Lupus)

You always say “It’s someone else” – but never say “It’s me”
If you cant do what must be done, – then how the hell can we?

It’s gotta come from everyone,
but no-one wants to know.
It’s never so important,
til you die.

There has to be a reason now – an answer to our plea,
we gotta take the time to find – a cure to this disease.

It’s gotta come from everyone,
but no-one wants to know .
Until they fall
never to return…

So all you gotta do is

take a look around you now
and help to do your part.
And try to make this world aware,
it’s tearing lives apart.

It’s gotta come from everyone
the hope we have in store.
We’ve won so many battles now
let’s fight a little more.
So we can show the end is near
we’ve strength to win this war
and its… time.

We gotta do what we can do
cos its… time.

If we can do it so can you
and its… time.

To say that Lupus can go screw
and its… time…

Wrote this earlier this year on piano & then just played around with it in my studio.

Was diagnosed with lupus a couple of years back after long period of mis/non diagnosis.

Has battered me a bit, come from a very sporty background & now am off school (again) which doesn’t sit well with me & am restricted to a classroom based subject now as opposed to my beloved PE. Still rise as many days as I can determined to crack on in the hope better days are ahead.

This song is about me talking to myself within, to others around me & to the illness itself for some understanding & let up at times.

You can read the lyrics below and listen to the song above. If you are viewing this in an RSS reader, you’ll need to visit the site in order to listen. To download this song for free, right click and save as.

When

When I am vacant will you bring me back around?
When I feel deafened will you help drown out the sound?
When I get low will you see that it’s not me?
When I feel naked will you restore my dignity?

When I’m frustrated will you step into the breach?
When I am rigid will you help me stretch to reach?
When I am weary will you open up my eyes?
When I am angry will you try to empathise?

This isn’t how I planned it, it’s not how it should be
Take it back to where you found it ‘cos it’s not a part of me

When I need sleep will you make it nightmare free?
When I need space will you please just let me be?
When I’m attacked will you help shut out the pain?
When I look broken will you help me fight again?

This isn’t how I planned it, it’s not how it should be
Take it back to where you found it ‘cos it’s not a part of me
If you’re listening you won’t win, I know this for a fact
‘Cos I will give my everything & I’ll keep fighting back

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Here is a video by Lisa Martens entitled Skin Montage Background. She submitted it for the Create A Video Project.

To view all projects submitted by Lisa, click here.

Here is a video by Lisa Martens entitled Skin to Cell. She submitted it for the Create A Video Project.

To view all projects submitted by Lisa, click here.

To view all projects submitted by Lisa, click here.

The way this story is told is a bit different. It is told through art. Normally, I would place any “about” information below the submitted art. However, this time both the “about” and the art are equally important to understanding.

After you read the story, click on the thumbnails to view the art. After, I strongly recommend visiting Lisa’s website to view more of this amazing and fascinating picture story.

About Lisa Martens:

As I face the last few weeks until I graduate with my BA in Art through Curtin University in Australia, I am reflective about my progress. My studies and art has been my saviour. It has grounded me, given me a voice, buoyed me when I was in deep depression and isolated due to constant pain and medical surveillance. I was diagnosed with Lupus in 2008, after years of searching for an answer to my crippling pain, chronic exhaustion, cognitive problems, skin rashes, swollen joints, mouth and nose ulcers and losing my hair! The physical and mental stress affects not just the person with this condition, but also impacts on family members and friends. I feel I will never be able to adjust to this condition, and often believe if I accept it, it means I give in to it, however I also recognize if I fight it, I will never find some kind of normality. This is why I say my studies and art has been my saviour. Focusing on concrete rational objectives has kept my mind and body busy. Juggling family life with study and illness has been difficult but extremely rewarding. I often think about those times I was so close to throwing it all in, and giving into the pain, cocooning myself, pitying myself, hating myself. How easy that would have been. But where would I be now? I thought it was ironic I should be finally, after years of putting everyone first, apply to study art, only to find some days I could not hold a brush, a pencil or charcoal, because my hands were so swollen and painful. But in some ways, these difficulties where the seeds of inspiration-discovering new ways to apply paint, to run ink, to caress charcoal onto a heavily textured support-finding new ways to mark an empty space enabled me to think divergently, allowed me to be more experimental with my processes.

The last year of my degree involved self directed learning, students create a negotiated proposal which develops independently, and they investigate a concept which they feel most connected and passionate about. I began by exploring entropy, which was a reflection of my body; I kept imagining my immune system attacking my body, the rashes which appeared on my body felt like deposits from an internal war. The days when I couldn’t draw I used photography and film as a tool to document my body, capturing macro imagery which allowed me to explore the microscopic terrain of my own skin. Becoming familiar with the intimate creases and marks felt empowering,connecting to the physical changes and recognizing patterns increased my interest in scientific processes and highlighted for me, the ease in which my body became less of a subject and more of an object. This was a frightening discovery, because I had been struggling to connect with my Doctors who treated me less as a person and more as an object-my disease and its effects far more fascinating than I was as an individual.

This estrangement was isolating.

I was beginning to object to the barrage of repetitive questioning and the habitual routine physical inspection with each visit with my Doctor. Understanding the logic behind this practice did not relieve my aggravation, it frustrated me. Flicking through reams of files, reports and data relating to the results of tests felt dehumanizing, I was being medicated according to statistics, I became a collection of binary numbers, where was my narrative? Finding a voice through my studies has enabled me to stand back and consider from many angles my place in this medical relationship, looking for ways to destabilize power relations and taking into my own hands my own physical examinations and use them however I wish has been cathartic. The images which are presented on my web site are a result of exploring, through art, the meta-narratives of medical reasoning (as posed by Foucault in his book The Birth of the Clinic 1976), which address scientific discourse that relies heavily on a form of objectivity which invites distance and detachment rather than engagement with a subject. I have been investigating ways to enlarge on the consequences of the clinical gaze by exploring the idea that a subject’s narrative is being replaced by the disease and location. By manipulating software to further broaden on the concept of the medical gaze, I wanted to probe the objective body (it) known through third person observer, as a passive object, depersonalized, reduced to the sum of its malfunctioning parts and counter this position by examining the subject body (me) phenomenological body, known from inside and experienced by me through photography drawings and film.

The following work is conceptual, I hope the viewer will be interested and curious and trust seeing imagery at a macro level through photography and film will induce a feeling of wonder. I anticipate the audience can thoughtfully reflect on the correlation of the body as subject and object and recognize the physical anonymity and powerlessness felt by a subject within the medical realm.

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To view more projects submitted by me, click here.

Tales of a Lupus Butterfly

For Lupus Awareness Month, I have decided to create an eBook and an Audiobook to go along with it. Both of these are free for you to download and enjoy. The name of this book is Tales of a Lupus Butterfly. I have to thank Mark Wheatley for allowing me to use the painting he created for the Lupus Awareness Virtual Art Gallery as the cover of the book.

The eBook is in PDF format and is 104 pages. The audiobook consists of 23 tracks, is 114 MB  in size and 2 hrs 6 min and 15 sec in length. The audio for the book is not the greatest. My soundcard is about to die and therefor there is a lot of noise. However, if you do not listen to the audiobook with headphones, you won’t notice it all that much.

Warning: There is language. While this is okay when reading, NSFW unless you listen with headphone.

Below you will find download links, streaming audio and the Dedication and Introduction.

Right Click – Save As this link to download the PDF.

Right Click – Save as this link to download the Audio.

Dedication

In Memory Of and Dedicated To:

All The Lupus Warrior Who Have Gone Before

May all your Lupus battles be remembered. May your lives be celebrated for both the good and the bad.

Further Dedicated to:

All The Lupus Warrior Who Continue To Do Battle

May we can continue to find the strength within ourselves and each other to continue the fight.

Introduction

It all started after I sent the following Tweet: “Wanna know what my problem is? I’m afraid to stop. I’m afraid that if I stop, I’ll never be able to start again and it will be over.” And with that little bit of introspection, I knew what my contribution to the Lupus Awareness Virtual Art Gallery, for the Lupus Awareness Month 2010 update, would be.

I, like many others people, if not all, who live with Lupus, have a list of fears as long, if not longer, than symptoms. One of my biggest fears is that if I give into the pain and fatigue caused by Lupus, if I completely stop doing, I will never be able to start again. I need to feel as if I am being productive in some way at all times. I do cut back on my activities, but I never completely stop.

I do not know if I could ever adequately explain the aim and purpose of this little book. By the time you are finished reading it, I hope that you fully understand its purpose. But if I had to try and summarize it in a sentence or two, I would say:

This book is so that nobody ever feels ashamed of their fear or anger, ever again. I know that is an impossible hope. Maybe a more realistic hope is, I hope this book lets you know that is okay that you feel the way you are feeling. That you are not alone in what you are feeling. That it really is perfectly okay and natural. There is no shame in it despite your best efforts to beat yourself up over it. That right at this very moment, odds are someone else is feeling the same things you are. I hope that if you start to feel alone, isolated and that nobody gets it, you can pick up this book, read it and really know you are definitely not alone.

And with that, another book was born. This is my gift to you, created from a number of my personal blogs, regarding my own struggles with Lupus. I hope that you find it useful. I hope that it helps in some way.

Julia “Jules” Sherred
October 2, 2010
Duncan, BC. Canada

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About Mark Wheatley:

Mark Wheatley holds the Eisner, Inkpot, Mucker, Gem and Speakeasy awards and nominations for the Harvey award and the Ignatz award.  His work has been repeatedly included in the annual Spectrum selection of fantastic art and has appeared in private gallery shows, The Norman Rockwell Museum, Toledo Museum of Art, Huntington Art Museum, James A. Michener Art Museum and the Library of Congress where several of his originals are in the LoC permanent collection.  His comic book creations include Ez Street, Lone Justice, Mars, Breathtaker, Black Hood, Prince Nightmare, Hammer of the Gods, Blood of the Innocent, Frankenstein Mobster, Miles the Monster and Titanic Tales.  His interpretations of established characters such as Tarzan the Warrior, The Adventures of Baron Munchausen, Jonny Quest, Dr. Strange, The Flash, Captain Action, Argus and The Spider have brought them to life for a new generation of readers.  He has written for TV, illustrated books, designed cutting-edge role-playing games, hosts a weekly radio program, and was an early innovator of the on-line daily comic strip form.

Backstory:

In 2007, Geoff bicycled across the USA to raise Lupus awareness. 156 days and 14514.045 km (9018.61 miles) later, on September 30, 2007, he finished that journey in New York, NY.

Find his original cycling website at:
www.bikeusa2007.com

Below you will find one of the pictures taken from that journey along with the story behind it.

Click the thumbnail for a bigger view.

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I was three months and 5695 miles into a ride around America when I crossed The Great Divide in New Mexico.  Generally, reaching such ‘peaks’ were a time for celebration.  At this stage I just felt flat.  And it had nothing to do with the wicked wind, the unfavourable road surface or four flat tires on the day.  I felt flat because I was beginning to have serious bike problems and there was a huge state called Texas coming up.  Soon would be the first time I would wake and say to myself, ”I don’t really want to do this.”   Thankfully, that attitude wouldn’t last.  I was reminded daily of those with lupus who couldn’t get out of bed, let alone jump on a bicycle.  And eventually after 9018 miles I rode into NYC with an awareness ride complete, yet so much still to do.  My lupus journey had, in fact, only just commenced.

About Geoff Thomas:

Not long before cycling 9018 miles around America to raise awareness for lupus, Australian Geoff Thomas [Editor of The Lupus Magazine] went back to school to study radio broadcasting and the news media. Diagnosed with cutaneous lupus and interested in many forms of the media, Geoff never forgot the assistance he received from others as he attempted to succeed in his studies. This helped immensely as he ‘mingled’ with reporters, journalists and photographers in America. He also had articles and photographs finally published as a result.

Upon returning home to Australia, Geoff had a few goals in mind – to use his experience to further raise awareness. Most importantly, that bike adventure resulted in making friends with lupus patients and organizations worldwide. His realization that lupus was a major worldwide concern prompted him to establish a worldwide blog for lupus to get the message out there. Geoff has always wanted to establish an online lupus magazine.

” Over the past few years, I’ve heard of so many people who’ve had to defer their studies due to lupus. I also know the satisfaction of finally having your content published – if this website gives an aspiring writer with lupus a chance, then we’re half-way there. I just thought the magazine would be a great place for people with lupus who wanted to contribute well-written material and continue to raise awareness at the same time.

There also seemed to be a little too much doom and gloom on the internet about lupus. I wanted to create something that was uplifting and fresh, in a laid-back magazine style. I want the contributing writers to have an avenue to express themselves creatively and positively. Most importantly, I want the readers to relate to the articles and feel a sense of ownership. Obviously it’s also a great opportunity for lupus organizations and others to be able to promote their lupus awareness efforts worldwide”

So there you have it – from little things, big things grow…

To view more projects submitted by Laureen, click here.

Background:

Last December, after Human Genome Sciences had announced the results of two, positive clinical trials for Benlysta,  I got a creative whim.  I felt that since it’s been over 50 years since we Lupies have had a new drug approved, that it was appropriate.

It’s a Christmas holiday poem, that was done to the “tune” of “Twas’ the Night Before Christmas”.  I’m a member of a private investment group and actually posted it to the Yahoo finance board for Human Genome Sciences.  To my surprise, Human Genome contacted me and asked if it would be ok if they read it in their Executive Board meeting. I said, “sure – no problem!!!”  Well, Human Genome Sciences sent me a couple of “Team HGS” t-shirts and wrist bands from the DC Lupus walk last May.  I was so thrilled to receive them.  They are a very caring company, and I was very impressed by this kind gesture.

Twas’ The Night Of Benlysta Results

Twas’ the night of Benlysta results
and all through the Board,
There were Pumpers and Bashers
Too many, Oh Lord!

It was midnight, and look
As I screeched and I yelled,
The results were positive,
Wow, this is swell!!

HGSI gave me a gift,
and the trial a success
God help me now,
My health is a mess!

To all my friends here
I’m thankful for sure
As there are too many
who need a Lupus “cure”.

The Bashers are rude
and the number of them high,
they got their butt kicked
ha ha ha, watch them cry!

HGSI, is a Godsend
for many of us here,
But may the Good Lord bless them
while we all give them, a cheer!

Millions suffer from Lupus
and no treatment in decades,
But now, thanks to Genome
Our lives will not fade!

I thank all my friends
for your kind words and support,
It means the world to me
My emotions are so hard to sort!

MY posts have all
but diminished from sight
But, alas have no fear,
I’m up for a fight!

I’ll never give up
and I’ll never be lost
I will have Benlysta,
At whatever the cost!

We Lupies must fight
everyday of our lives,
but must we struggle,
with so many hives?

I pray that one day
I’ll wake up and feel good,
Until then I will cope
as I know, how I should.

I feel so alone,
and it’s unbearable at times
But thank you Lord
for the Lupies Online!

I couldn’t have lasted
without all of you here
So that is why
I send you all Holiday Cheer!

Benlysta is proof
that miracles, do happen
I couldn’t possibly ask for more,
This Holiday Season!

As I end this poem,
I want you to hear,
Merry Christmas to all
And have a Happy new Year!

To view more projects submitted by Laureen, click here.

My Lupus Story

I got into online investing, because of Lupus and being on disability.  I felt had to keep my mind busy to distract me from the pain.  Little did I know what was ahead for me.  I had no idea just how life-changing it would be.  My husband had no time for me being ill, and said that since I was “always sick and tired”, and “never wanted to do anything” he decided to date other women!!!!  What kind of person does this?????  Needless to say, I had to leave him because the stress was just too great – and we all know that stress is the number one trigger for flares – and I was in one long flare for a couple years.

I decided to read up on how the Stock Market works and in the process, I met a man who was brilliant at trading stocks online and I asked him if he ever mentored anyone before, and he said sure, I’ll help you out.  Well, we spent many hours online, with him teaching me through Yahoo voice, everything you would ever need to know about online trading.  I was able to grasp the “art” of online investing.  I had also “met” a couple of others online, that also wanted to learn, and hence, our stock group was formed!

My mentor recently passed away and it was sudden, and devastating for me, since he taught me everything I know about reading the charts and markets.  I miss him dearly, but I know he knows, just how much he meant to me and how appreciative I am.  He always had a kind word for me and supported me emotionally, when I had no one else who wanted to understand my  Lupus.  God Bless Him!  Our group still talks, but I’m now trading successfully, on a daily basis by myself, with some “online friends”.

As for my Lupus, I live everyday like other Lupies – one day at a time.  I have met so many wonderful people online, and that has been my major form of support.  My friends and family just don’t get it.  They say, “I don’t understand how one day, you’re fine, and the next, you can hardly get out of bed.”  I was even told, that I just “need to buck up already and quit complaining all the time… Maybe if you quite being so lazy and got out more, you’d feel better” UGHHH!@!!  That’s enough to make me feel sick to my stomach!!!

Thank God for websites and blogs – it’s a wonderful way to share, uplift, and know that I’m not alone.  I just keep to myself, mind my own business now, don’t share — or complain like I was told  I did (I actually thought I was “communicating” to my family, just what I feel and go through daily so they could understand – but I found out after the fact, that it was all just construed as complaining).  I’ve told my family, that if they would just do some research online, and educate themselves about Lupus, that they would understand that I’m not abnormal – I’m just Lupie!!!!

It took a lot for me, and many arguments later defending myself, that I don’t talk about or share anything with them anymore.  I have a “don’t ask, don’t tell” policy now.   What a shame that is.  Now if I had “cancer”, well then that would be different, since most are far more educated with that.

That’s my story!

To view more projects submitted by Karl, click here.

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About Karl Johanson:

Karl is the editor of the Sci-Fi magazine, Neo-Opsis.

Y’know, I’ve decided that just spreading awareness isn’t good enough. I want to do something tangible. So here’s my project for World Lupus Day. I mentioned above that my sister has lupus. So she’s getting some “get out of chores free” cards that she can use on a day when she’s just really not feeling up to it. Here’s a copy of the card, in case you want to use it to help out your own friends with lupus. Click on the card to make it bigger and print a copy (I made it fit on a 3×5 card at 300dpi, but you may need to scale it.

So here is the final product:

Click on the card to make it bigger. Dave made the card 3×5 at 300 dpi. You may need to scale it to your printer. He has also created a file with the original graphics, which you can download here, so that you can customize it. You’ll need GIMP to edit it (free download).

To view more projects submitted by JoAnn, click here.

[Show as slideshow]

[View with PicLens]

To view more projects submitted by me, click here.

Catherine’s Dance

The day she was born the dance took stage,
A courageous spirit that would never age.

It moved in all aspects of her life,
Her love and her compassion, her pain and her strife.

The dance was apparent when she did succeed,
But there was a time when it seemed to recede.

When she could not move and it always seemed night,
The dance still raged on, fighting to see the light.

It leaped and it turned trying to break free,
Emerge from the shadows for everyone to see.

Out of the dark, the dance broke its chains
Like the sun breaking through the clouds and the rain.

Her dance continued to move until the very end
Surrounding all of her family and friends.

She lived a life, which inspired all she did meet:
A mother, a wife, a teacher; she did not miss a beat.

Although she is gone and she will be missed very much,
Her dance lives on in all that she did touch.

To view more projects submitted by Kevin, click here.

BUTTERFLY

One thousand faces
but only one matters

yours.

The only one that affects me
is the one I see on those days
we never talk about
when you’re armored and
not-crying as hard as you can

facing off against one thousand enemies
a crutch in your sword hand
your steed is a chair
one you had to be set into
that may as well be strapped to you

and you charge anyway.

Waiting is just an invitation
to quit
you taught me this
though I disagree with the
difficulty of the lesson

you didn’t have to hurt
yourself so badly for me to
get the message
and I don’t want either of us
to learn any more

if this is how it happens.

The way you hurt
made you my hero
but I’d take you as
as just another ordinary
if it meant an end to this fight.

You bled on those thousand enemies
until it drowned them
you traded in your wheelchair
for rollerblades

You survived.

But I know you look out and still
see those thousand faces.

but I promise
if you look beyond them
you’ll see the thousand faces
of those who love you.

To view more projects submitted by JoAnn, click here.

Hey Butterfly

Hey, butterfly

You sure look pretty today

Dancing from one flower to the next.

Can I ask you a question?

Did it hurt?

Back when your skin started to change.

Back when you knew things would never be the same.

Did it scare you?

When you had to hide in the dark, under that leaf, away from the sun?

Were you afraid of the dark, like I am?

I miss the sun.

Do you even remember what it was like back then?

Back when all you could do was hang on with your teeth and claws and hope you wouldn’t fall.

Back when your skin changed.

When your world changed.

When your life changed.

Were you afraid, butterfly?

I wonder if I will fly too.

You sure look pretty today.

I hope I fly.

Tears

by: Anonymous

It’s just a tear
Rolling down her cheek
Doesn’t mean she’s weak

Just to much dealt
A fact of life
Unable to be
A mother and wife

Hating to ask for help
Wanting to be whole
Sitting immobile
Playing a role

Observing Life
Instead of playing a part
Day by day
Literally breaks her heart

No tight jeans
No standing tall
No participation
Hurts most of all

She wants to work hard
Give everyday it’s chance
And by Saturday Night
Be ready to dance

Still she hold hope
No matter how small
Tomorrow will be better
Tomorrow she won’t fall

That crazy optimism
Keeps her going
And for everyone else
Keeps life flowing

So it’s just a tear
Rolling down her cheek
But it’s a big deal
Because it makes her feel weak.

To view more projects submitted by Kevin, click here.

An Essay

I’m sorta cheating on this project.

I don’t know anybody who suffers from Lupus. That’s to be expected, I guess, with a disease so rare. That it gets any acknowledgement at all is surely due to its severity as an illness. What little I know of it is horrific.

So what, then, am I writing about here? Despite not being directly affected by Lupus, I have a very personal experience with Lyme Disease. While largely treatable and curable as long as it’s caught early, Lyme can ravage a body if it remains undiagnosed like it did with my mother for twelve years. The way it attacks can be quite similar to Lupus; they’re often misdiagnosed as each other, or as any of a hundred other unrelated illnesses.

So the hardships my mother endured over the last twenty years qualify me to empathize, at least a little bit, with those who suffer from Lupus. They each still have their distinctions and I don’t mean to imply too much; there are plenty of minor cases of Lyme and I don’t want anyone to think I’m downplaying the tragedy that Lupus is… every time.

So from this point on, I’ll speak on the common ground between the two.

There’s really only one thing for me to say – I hate, hate, hate these diseases. My mother was one of the most active people you’d ever meet. Between hang-gliding, wind surfing, riding dirtbikes and mountain climbing, she had her share of injuries… but moreso she had a collected wealth of experience and love of life that rivaled that of everyone else I ever met. And people healed from injuries, so why stop? She never would unless something else stopped her. In this instance, it was a rash she went to the doctor to check out, and had she worn a t-shirt and jeans to the doctor instead of the pantsuit she chose, maybe he wouldn’t have summarily excluded a likely diagnosis because of assumptions about her lifestyle.

There wasn’t much literature on the disease at the time, and people in and out of the medical profession did their part to propagate many misconceptions that made these diseases exceptionally hard to diagnose. I remember the day my mom came back from a specialist with tears in her eyes, ready to share the bad news with us that all the odd pains and debilitations she started experiencing were caused by the onset of multiple sclerosis. She didn’t lament her predicament (though we would all later lament its gross inaccuracy and the resulting delay in treatment it would cause her) but instead spoke of relief for finally knowing what was causing all this pain and confusion.

That’s what really hit me. My mom had always been a hero of mine for being such a good friend and mentor, but her own bravery was shown in vivid detail with the way she carried herself while living with her illness. Never once did she lose her spirited and upbeat demeanor. When it mangled her vocabulary and clouded her memory, she told jokes she did remember. When it took her legs, she costumed her wheelchair as a dinner table that year for Halloween. She became my hero all over again for that unrelenting daily optimism, and it broke my heart that she was enduring unspeakable pain every single day. The only gift I could think to give her was reprieve from her constant positivity. Give her a chance to be vulnerable and weak around me. Stop expending that extra effort when she was already so compromised. Let her cry if she needed to. It’s a fucked up world when the best thing you can think to do for someone is watch them suffer. And despite her comfort with me and appreciation that I was constantly telling her that whatever guard she had up, she could let it down, she still refused.

“Being sad doesn’t do you or me any good,” she’d say, “being happy always feels better anyway, so why stop?” She had the nerve to be concerned about me first. I cursed the world for doing this to such a beautiful person. There was nothing fair about it. It was the opposite of fair that her incredible nature and character had to be revealed in full through such a terrible predicament.

The happy ending is that the specialists she eventually found fought her illness tirelessly. Within five years of extensive therapy and a medicinal regimen that compromised what healthy parts of her body she still had, she had been granted an almost full reversal of her physical condition… in no small part, I’m sure, by her own will to recover. She went from the wheelchair to crutches. From the crutches back into the wheelchair. From the wheelchair to sneakers. And today, she still straps on her inline skates and jaunts around the neighborhood for exercise. Her cognitive dysfunctions still persist at times, and she still suffers from chronic nerve pain, but she’s well enough to move on her own again. She was lucky, and determined. You need both to survive something like this. But the most important part is, by far, the determination and attitude. They always say the worst things happen to the best people; I think it’s more that the best people are revealed by the way they handle those terrible things.

And those things will keep happening. And people will be handling them for a long time. We are, however, getting progressively better as a society at being able to inform the public about these diseases. We’re making it easier for people to learn about their conditions more quickly and more reliably. And we’re getting better at putting people together who can benefit from each others’ support. It’s not nearly enough, but it’s a start.

To anyone in need of that support, I offer you what little I can in the form of sympathetic understanding, and hopefully a couple encouraging words: I’ve seen a miracle take place in front of me. Our bodies listen to our words and our thoughts, and they believe what we believe. All you have to do is reach out to those around you, and please…. please believe that you’re going to be the one that’ll beat the odds. If you do that, I promise your body will do everything in its power to prove you right.

However, due to my flare, I was not able to answer them in type form. So I told people to email me their questions and I would do a podcast in order to attempt to answer them. Below you can listen to the podcast. You are also free to download here by right click – save as. I thought it appropriate to leave it here as part of the Share Your Story project.

The podcast is long. 2 hr 28 min 42 sec and 136 MB. The first 1 hr and 26 minutes or so, I talked about the physical faces of my lupus. The last hour and a bit, I talked about the emotional faces of my lupus. And it is certainly emotional. It is the most open and honest I have been in public about this part of my lupus.

To view more projects submitted by me, click here.

To view more projects submitted by me, click here.

Putting A Face To Lupus – The Elephant In The Room

Hi, my name is Julia and I have lupus. Today has been a joyous day for those of us who suffer this disease and to our friends and family who take the time to really understand it. Unfortunately among all the news surrounding the results of the latest drug trials for Benlysta, all the focus has been on money and not the faces of lupus. Lupus is called the disease of a thousand faces for a reason. There is no cure and it is unknown what causes lupus. And despite television programs like House constantly throwing out the word lupus on every episode like some meme, most people have no idea what lupus is.

I am going to try and put a face to lupus. I am going to try my best to be very blunt and write from the heart. I am not going to talk so much about the physical effects of the disease. My focus will be about the psychological and sociological effects of the disease. This scares me for many reasons that you may understand as I try my best to tell my story openly and honestly. I hate talking about this as I always get met with pity and the “I’m sorry” replies when people become uncomfortable and do not know how to respond. I am not sorry I have this disease but I am always sorry for sharing that I have this disease. Hopefully this time I will not be sorry. I am not going to get into stats or give a bunch of links. It may help a reader understand and at the same time since no two lupus suffers are the same, it may not.

When I was first told I may have lupus, my heart sank. Lupus = death and I knew this better than most people as I had just lost someone close to me due to the complications of lupus. The death was awful because we had no warning. It is not uncommon for someone with lupus to be told many times, “This flare may be the one that kills you. It is time for you and your family to prepare.” So you do what you have to do and you get better, only for the next time. With the person I lost, we were told that many times over decades and every time she got better. Then without warning, she was dead.

Many of us who suffer from lupus have to see doctors regularly. I personally have 6 doctors that monitor my condition. When I am not fed up with living for doctors appointments and am being a “good” patient, I have to see some sort of doctor every two weeks and have blood tests done a minimum of once a month. My friend went in for her regular blood work. Her liver levels were off. Less than three weeks later, she was dead. When I got the phone call, I thought it was a cruel joke. What do you mean she was dead? She was just teaching dance a couple of weeks ago. Why now and without warning? Why not the many times in the past when we were told this may be it? It was at that time that my own road to diagnosis had begun. The last thing I needed was a reminder that I was about to be handed a painful death sentence.

The elephant in the room was becoming bigger. You do your best to ignore it. You do your best to live each moment in the now and not worry about the what-ifs. Because let me tell you, there are thousands of them. You find yourself every now and then looking at your children and fighting back tears. You have these moments often where you think “I have to take a snap shot of this and remember it always always and make sure they remember it always always as next week I could get bad news.” Then you beat yourself up for acknowledging the elephant and forgetting to just live. But then you beat yourself up again because you need to be realistic. You need to make sure that those whom you love know it and you really need to make sure that your children know it.

My heart breaks every time my youngest brings up my stroke. That was a scary period for my children and I HATE that they have to go through my illness. Two movies that make me bawl to no end are Finding Neverland and Stepmom as they deal with children losing their mothers to disease. My heart breaks because my children will go through that one day unless there is drastic change in the treatment of lupus. Today gave me hope and for the first time I was not afraid for what my children will have to go through despite my best efforts to ignore the truth and just enjoy them.

It is a very sad thing (and hopefully they find the why’s to this soon) that most women who are diagnosed with lupus are in their child-bearing years and get the diagnosis shortly after having children. I love my children with all that I am. However, had I been diagnosed with lupus prior to having them, I would not have had children. And admitting that out loud is hard for me since for as long as I can remember, I knew I was going to be a mom. I always wanted to be a mom first before anything else.

It is hard not to live in fear when you have lupus. There are so many things that can go wrong. There is no rhyme or reason to any of it. You go through your days and live until you hear news of some illness spreading or some letter comes home from your child’s school reminding you the cold and flu season is here and what extra precautions to take. You get this news and you have to stop living, even if its for a split second while you think about how this impacts you, your family and your daily life. You have to think about things that most people never have to think about.

It is not uncommon that I have to be put in reverse quarantine because if I get these illnesses, they can kill me as I have no immune system. To make matters worse, I cannot be vaccinated to even be able to give myself some form of immunity to some of them. There was one period where I was not allowed to leave my house, not even to go to the store for 2 months because I had 5 infections in as many weeks and the next one my doctor was afraid would be fatal. This always makes traveling scary as well. The last time I traveled my doctor actually said to me (and some may find this harsh but my doctor and I are very blunt with each other), “You better be careful or you will end up in a body bag.”

All the what-ifs that go through your head. Is the vacation worth getting an illness that could become fatal? An illness that for most people would be nothing to recover from. Is the fatigue that is sure to occur worth it? But you cannot live your life in a bubble. You take these risks because you need to live. That does not stop the fear and doubt that crops into your brain every time you start to plan anything. And even so these thoughts may be short lived and they do not consume you (or at least you need to believe they are not consuming you), they are still there. The elephant becomes bigger.

And then comes relationships and the dread of forming real bonds with people. I feel a stupid sense of guilt when it comes to forming both romantic and platonic relationships. I am not talking about acquaintances here but real meaningful relationships. I do not want more people than absolutely necessary to suffer through this with me. It is unfair of me to ask that of them. And if they are truly close to me, suffer they will even so they do it willingly because they care for me and love me.

It is very difficult for me to really open up to people and let them into this part of my life. Two reasons for this is because I do not want them to suffer emotionally as they have to watch helplessly while I go through a flare, and the other is because in the past the elephant in the room got so big, the relationships ended when finally they could no longer deal with. I am always afraid this will happen despite the fact I tell myself and others otherwise. I pretend I do not care and that I do not need anyone. When it is time to have “the talk” about the elephant, panic sets in. This is the moment where you can no longer ignore the elephant and you have to prepare the person who tells you they want to take a journey with you in life, “Guess what? I have this thing and well odds are that I will die before I am 60.”

What a joyous conversation to have to have with someone who has told you they want to take a life journey with you. I have had this conversation more times than I want. Having it one time is more times than you want. Some have said (and in my mind at the time and now, very naively), “Yes I am capable of walking this road with you. I want to take a journey with you. Let us build a future together even if its a shorter future because you are worth it. Let us live in the now and not worry about the future.” Then when the battles with the elephant begin, they decide they do not in fact have what it takes and leave. I cry. I pick myself up. I tell myself it is okay because I knew this was a possibility. I move on. I trick myself into thinking I do not need or want deep relationships only for the next opportunity to present itself and the fear and panic to once again set in. I want the elephant to die. It is so draining to ignore it and so depressing to face it. Then when moments come up where it starts to stomp its feet and make noise, you wish you had a gun.

I have suffered with illness all of my life. I was diagnosed with my first auto-immune disorder when I was 6 (psoriasis). I have spent a lot of my life ill and spent many years misdiagnosed with a myriad of things (some of them were almost fatal) until finally I got some much needed answers when I was finally diagnosed with lupus. That diagnosis was a mixed blessing. On one hand, I had answers. On the other, possible death. I do my best to ignore the elephant.

I do my best to live harmoniously with it and not let it depress me. For the most part I am cheery and grateful for the wonderful life I do have in spite of it. I do not take a single moment for granted and I have experienced and done some pretty cool things with my life. I have overcome so many obstacles that have been thrown in my path. I hope to be an inspiration to even just one person who suffers from any disease or chronic illness. I was fortunate enough to have two great women in my life growing up who dealt with chronic illness. They taught me that no matter how bad it may be, for someone else it could be worse and you do what you have to do to get through each moment.

I look at it like a 12 stepper does, second by second if that is what it takes you to get through the day. You do whatever it takes to help people (even if its just a shoulder or by example). You do whatever it takes to get better even if there is no getting better. You know what, you can have a great life regardless. You are also allowed to have moments of anger and rage. There are moments (even if they are brief) that I rage against it. Periods where I stop seeing the doctors because all they tell me is we are giving you the best treatment we have at the moment and hopefully this will pass. There is never any hope when seeing the doctor. Periods where I stop taking my meds as they only offer 25% relief and what is the point of living if I am tied to drugs, doctors appointments and blood tests.

Periods where I want to tell everyone close to me to go away because having me in their life will only bring them pain. Periods of depression. But I am human and I am entitled to these periods (even so I beat myself up over them and feel weak). Moments where I think why me? Something would be terribly wrong if I did not have these periods.

Today though is not a day to ignore the elephant. Today is a day of hope. Today is a day to look the elephant in the face and say, “AHA YOU SUCKER! After 50 long years we may finally have a gun. Not just a tranquilizer found accidentally while treating other illness but a real gun! It is time for you to leave the room forever.”

Looking back at my blog, I admit I am not as open and honest as I wanted to be, as I had hoped to be. However, I do hope for once I am not sorry for talking about the elephant. I hope that next time anyone is confronted with the elephant that they are not afraid to acknowledge it. I hope that next time someone tells you about this elephant, you may understand even a small fraction how your reactions to the elephant amplifies how extremely difficult it is for the person sharing that they indeed have this elephant living with them.

I hope…