“What is the nicest thing (or things) anyone has done for you since you became ill?”

I believe the nicest things that I’ve received from people since my health challenges hit me have been to offer me reality checks about humanity. 

As difficult as they may feel at first, the comments, behaviors, choices and changes in our relationships have motivated me to respond in ways that have been outside of my comfort zone.  That blundering through my fear, grief, anger, apprehension and surprise has built within me a sense of resiliency that I never knew possible.  It has also led me to some surprising appreciations. 

Those relationships that dissolve due to the loss of knowing which words to speak, or the ugly realization that their patience really DID have an end, offered me opportunities to see that all people are fallible.  It has been easier, after some time passes, to run into these individuals (who walked out of my life or visa versa) and speak to them as fellow humans.  These are simply honest people who may have made decisions that hurt me, but were decent enough to be upfront about it. 

It has been the relationships with my medical teams that have given me moments of vulnerability as well as moments of gratitude.  Beginning with my first practitioner’s refusal to acknowledge the necessity for a urine sample to my specialist’s decision to waive his fees in light of my difficult circumstances, I have learned much about the dimensions of medical care.  The hospital’s response to my then insurance company’s act of betrayal showed me that  they do have the capacity to care.  The laughter and care of the staff, both at the labs or during my hospital stay, gifted me with moments of respite from the uncertainties I was facing.  In fact, I was amazed at the commitment my medical team had shown during my hospital stay by keeping a toxic individual from threatening my chances of survival. It was through their security and protection that offered me time to bounce back from kidney failure by restricting their visits, for which I will always be grateful.  As easy as it sometimes is to become frustrated with how our nation’s medical care falls short or how cold our doctors may seem during our 15-minute appointments, seeing the other side of those presumptions has pushed me to look beyond the white coats and clip boards.  They live and breathe just like I do.

There have been individuals who have astonished me with their compassion and respect, even when they didn’t understand what was going on in my life.  The mysterious food boxes left on my front porch without a note.  The bills paid on my behalf without explanation or warning.  Their cards, letters, phone calls and emails touched my hardened heart with grace and sincerity.  Their well-intentioned, unsolicited questions and suggestions forced me to listen to reason through my veil of distrust and seclusion.  Their understanding that they would never fully know what I was experiencing allowed me my time alone without explanation or apologies.  They knew I needed the time to breathe and, when I felt I needed no one, they helped me to see how wrong I had been to hold onto my pride like a medal of honor.  It was clearly more like a fortress of shame and was something that needed to be dismantled. 

It is easy for us living with illness to see ourselves outside of a mainstream, assuming that those around us are generally healthy and live without pain.  The fact is, our human bodies have the potential to break down in so many ways, some in plain view and some well disguised.  As we physically hurt, those we share our days with also hurt.  By not knowing how to fix things, what to say or where they can make the connection with us to show us how much they care.  Those individuals who keep their distance or walk away are showing us their limitations and vulnerabilities, too.  It hurts to realize we can’t do or must do the thing we sometimes need to do.

I’m learning to see beyond the actions and listen beyond the words in order to understand our shared human conditions.  It isn’t always easy or instantly possible, but I’m getting better at recognizing limitations as simple realities.

It is in facing the walls or getting through the battles that do contribute to my story.  It is the stories of others that help me keep my own story in perspective.  The kindest thing that I feel anyone can do for me is to acknowledge my place here on earth as a part of a bigger story.  I’ve learned that the essence of being human is exploring the complexities of the many characters living within our stories. 

The struggles and villains make the story interesting.  The perserverance to keep going makes it all worth the sharing.

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Visit Q and the rest of the participants at her blog carnival!

I received a note from the Oregon Chapter of the Scleroderma Foundation that they will once again be on our own KATU Channel 2 AM Northwest morning show!  This Thursday,July 1st, AM Northwest will generously offer program time for the chapter’s scleroderma awareness team to introduce information about living with scleroderma and to present the upcoming “Stepping Out To Cure Scleroderma” benefit walk scheduled for July 10th here in Portland.

The exact time for the team, composed of chapter members Maria Rivelli, Sue Pinkerton and Erion Moore,  isn’t set until the show airs, so you will need to watch the entire show between 9-10 am.  This program (and station) has been very generous and supportive over the years, so consider letting them know how much you appreciate opportunities (such as this Thursday’s show) to learn about our local health and wellness resources. 

Also remember to register for the 5th annual benefit walk on Saturday, July 10th.  You can do so by going to  their Firstgiving page .  Also, you can find more walk details at the Scleroderma link under the “Announcements” tab on our main page.

Today, BloggersUnite is hosting an online event entitled People First: Empowering People With Disabilities .

I’ve been having unusually prominent symptoms from my lupus.  I always anticipate a little trouble once the sunshine finally arrives here in Oregon, but these are symptoms that I haven’t had or remember having for quite a few years.  Naturally, my first concern is that my kidneys are in trouble.  The rates of kidney involvement for us with lupus averages about 50%.  I’m one of the lucky ones where it went straight to my kidneys to begin with, and I do mean lucky.  Since there isn’t much to do for my lupus via medication, having the back up of dialysis and decades of kidney research gives me a sense of assurance for a ‘Plan B’.  Of course, it is a moot point since it doesn’t do me much good without medical insurance or a nice nest egg to pay for it.

So, my imagination has been going wild with concerns of clotting and strokes, MS, CNS involved lupus, and so on.  It’s amazing how much panic I can stir up when my body sends me the signal that something is amiss, no matter how truly insignificant.  Clearly, I do not appreciate all that I am blessed with health-wise, if I can be derailed this easily.  What a baby. 

I know some amazing people living with much more challenge, heartache, spirit, grit and courage than I do.  I am honored to have these friends encouraging me to take what life throws at me and who always teach me something about my perspectives, judgments and biases, character and life, as a whole.  I don’t want to learn how to make more excuses or whine about my supposed bad luck.  I want to learn to be strong, and my friends (who I feel deserve to have their abilities mentioned rather than their dis-abilities) have a particularly keen ability to get me off my lazy tail end and try harder.  It is these friends I want to honor today and thank them for making my life more interesting, fulfilling and humbling.

I want to quickly mention a few websites that I visit as often as I can, to learn more for my friends, myself and my family. 

Disability Studies, Temple University  features exceptional writers, topics, information and many more notable blogs or websites to visit.  I am not living with a disability, but always leave this resource with something to consider and someone to learn more about.  

Lupus has been included under the ADA guidelines of disabling conditions or diseases.  However, the protection within the workplace or even within the medical community seeking/maintaining insurance coverage is still pretty vague and inconsistent.  If you are in a situation at work where maintaining employment has become a problem due to your chronic health challenges, I highly recommend you check out my friend and chronic illness coach, Rosalind Joffe .   She is a wonderful resource for anyone living with a chronic condition who wants to succeed in finding their place in the workforce.  I’m currently going through her workbook that compliments her book Women, Work, and Autoimmune Disease:  Keep Working, Girlfriend! that I have reviewed here Here are a couple of her blog posts that address disclosing your health, your rights to learn more about and some recommendations. 

Job Interviews and Disclosure

Insurance benefits and Disclosure

Also, for anyone looking for more information about advocacy for chronic illness disability, here are some additional resources we know for you to check out: 

National Resources

Advocacy for Patients 

US Department of Labor  – Office of Disability Employment Policy

Oregon Resources

Disability Rights Oregon  

Disability.gov 

For Oregon Employers

Oregon.gov FAQs regarding disability in the workplace  

If you know of other online or Oregon resources, please be sure to leave them in the comments section here.  We are always looking for more to add here on the website.

Here’s to emPOWERing all of us~ we all bring something to the table.

The thing about pain is that when you don’t have it for awhile, you really do forget what it is like to live with it.  I’ve been so fortunate to have made it through the pain I had right before my diagnosis and left it behind for nearly a decade.  I am grateful for every day, believe me.  I know that there are so many out there who are begging for a month, day or even hour without being held hostage by their bodies.  When my headaches started in, I first blamed lack of sleep and intended to tough it out without meds.  By the fourth day, I was taking any sinus, cold or allergy pill within reach.  I gave in to the pounding temples, throbbing eyeballs and the sharp jolts of pain that felt like what I only imagine an exploding vessel would feel like.  However, the worst thing wasn’t about having to take the pills or even having the pain again.  It was being reminded that my life can be brought to a complete stop whenever my body demands it.

While my head was exploding, I felt like I couldn’t do anything.  Read, spend time at the computer working or goofing off on Twitter, watch TV or sleep.  I couldn’t plant my garden or catch up on any house chores because bending down and moving around just made my head hurt worse.  I was just stuck sitting and fuming about the prison term I was being forced to serve without any explanations.  Living with an illness can get like that and I was seeing myself as unproductive, not getting to the things that I knew I wanted to do. 

 The challenge, though, went beyond the pain as I began to truly notice my response to it.  I realized that the things I do most often were those things I couldn’t do during my body’s rebellion and it left me aware of how limited my coping tools were in a ‘pinch’.  My head was pushing me to step outside the ‘box’ and force me to explore some new skills. 

 I brought out my art supplies, took walks, made soups and had long talks with my daughters. The third day into it, I noticed no headache until noon, then 3PM, then a day without and so on until now, where it’s been three pain-free days.    

This month is awareness month for many illnesses that involve chronic pain such as Fibromyalgia, Arthritis, Lyme disease, and, of course, Lupus.  Every day, there will be bloggers, news research articles, internet conferences and radio programs, ad campaigns and updates/tweets on the popular social networking sites.  Awareness isn’t limited to online activity either.  For example, The Pacific NW Chapter Oregon Branch is holding their walks this month (http://www.arthritis.org/chapters/pacific-northwest/events.php).  Also, this weekend, there will be a local health event here in Portland hosted by the Jewish Family & Child Service.  ”A Day of Empowerment, Solutions, and Support for Individuals with Acute or Chronic Illness or Disability and their Friends and Family ” will be held on Sunday, May 16th, from 10AM to 2PM.  For those of us who are struggling with our health, this event offers a variety of presenters and exhibitors (including MLWT as both) to help find some supportive resources.  For us like me, who are blessed with having more of our time pain or challenge-free, it is a valuable reminder of how we still have to prepare for when our bodies rebel.  Living well is grounded on strengthening individual empowerment and, even though we may never be able to control our pain or symptoms completely, we can control our responses to it.  Not simply by thinking more positive, but being willing to think outside your own box.  

Hope to see you this Sunday~ it looks like there will be some great presenters and exhibitors to explore.  MLWT Guest blogger and new parent support practitioner, Sarah Nuxoll, will be sitting with me at the MLWT table enjoying the event, too.  Stop by and say hello~

“What we call a symbol is a term, a name, or even a picture that may be familiar in daily life, yet that possesses specific connotations in addition to its conventional and obvious meaning.”  (Source:  Jung, C. (1964). Man and His Symbols, (Ed.). New York, NY: Dell.)

I came across this definition the other day after seeing several references to images being used to describe health challenges by bloggers, tweeters, authors and fellow patients.  Use of symbols, icons, or archetypes is deeply rooted into our human existence and I’ve noticed many patients rely heavily on images to develop a sense of personal understanding or acceptance of life as they see it.  Some images are man-made and have meaning applied to them on behalf of what is collectively agreed upon.  Others discover something on their own, that identifies or expresses what they need to say whether others ‘get it’ or not.

Take lupus, for example.  We see wolves, butterflies, the color purple, or the advocacy wrist bands.  Sometimes words are used to help solicit an image when read, such as “survivor”, “warrior”, “lupie”, and so on.  Heck, even using social media for networking with other patients adds to the word list like Twitter “followers”, Facebook “friends” or “fans” and some sites use ranking terms such as “expert” or even “ninja”.  This is very natural for us to do and we may not even realize it consciously, as in using something to remind us of future events.  We automatically apply images while we doodle, decorate or through other more creative, right-brained endeavors.

Having used the super hero Wonder Woman (DC Comics ) for years, the obvious unrealistic physical dimensions aside, I recently reconsidered that image for myself lately and whether it still applies to me today.  Things have changed since I began using her image to lighten up what I was experiencing with my lupus and daily life, in general.

Choosing an image that personally fits our perception of self is important, in order for it to be effective as a source of inspiration or expression.  Keeping that image or symbol current, however, is just as important and revisiting the one(s) we use needs to be done periodically.  As we all know, lupus isn’t a constant state of being—it’s a daily experience.

May is coming up quickly and that means it is time to get ready to host our annual MLWT Lupus Awareness Month event.  Last year, we invited all of you to submit your thoughts on what lupus meant to you and/or your life.  This year, we want to take that one step further and open it up beyond just words.  After all, sometimes words just don’t cut it, right?

We invite you this year to explore the symbols you use in your life to represent, cope with, express to others or identify with in regards to lupus.  Do you use the collective butterfly or do you have some other image that you feel represents your lupus more effectively?  If you don’t have one symbol or image, we invite you to contribute a photo ‘portrait’ or visual representation in one shot that you feel tells your story, experience or perspective.  Your garden, your pet, your latest craft or artwork, a scene from a trip, any culinary masterpiece or favorite food (i.e. chocolate?  Why not?)  You can find a couple of my examples here and on blog posts for the next two weeks before May 2nd to get you thinking about your own images.

If submitting portraits, we ask that you do not submit any photos that identify or show the faces of the subjects, due to legal and privacy issues.

The catch in the submissions, though, is to create them around the word “strength”.  We are choosing this theme for two reasons: 

1)    How many times have we heard someone assure us that we don’t appear to be “sick” or that we look “fine”?  Do we take a minute and realize just how much strength it takes within us to look that way to others, while our bodies are being ravaged by our own immune systems?  Our guess is, “no.”  We want to focus on that strength, which using symbols or images are often used for, that helps us recognize what it takes us to get through the day and honors us with some self-care.  We spend a great deal of time caring for others, so May will be an opportunity to care a little for ourselves;

and 

2)   MLWT is not only about sharing with others who are living with health challenges, but also working towards sharing our lives with others who are not facing any current health challenges.  This could be family, friends, employers and co-workers, teachers, neighbors, politicians and public servants.  We at MLWT believe that the best way to advocate for lupus awareness is to live with it well and make it relevant to others, based on our strengths rather than any limitations. 

Beginning today, take some time to re-evaluate your symbol(s) or create an image that helps define and express your life with lupus.  It may be obvious, as Jung states in his definition, or more subtle.  We envision examples of work including photos since we are focusing on imagery, but as I mentioned earlier, words can bring out images, too.  If you aren’t inclined to submit any photos, don’t let that stop you from contributing something in writing. Favorite recipes, poetry or quotes, short stories (limit 1000 words), sharing of memories and lessons learned that represents an idea you use for your tomorrows. 

Send us your submission by email (mylifeworkstoday@gmail.com) with your  .jpg (common photo online format) and word document ( if written) attached.  We simply ask that you honor the intent of this event by practicing some discretion, as we will not be responsible for content that is deemed offensive by some or do not observe all copyright and/or trademark laws. 

All submissions are to:

• be your own, original work
• include your first name;
• any contact information, if you’re interested in hearing from others via emails, Twitter or Facebook
• include a little blurb sharing what your submission represents for you. 

We reserve the right to refuse posting submissions if we do not believe they represent the mission of MLWT, the spirit of this event, or honors the safety of our community.

We are looking forward to another wonderful event and to learn more about making lupus visible, by expressing the uniqueness and strength of each one of us who lives with it.

We’ve been asked by the National Lupus Foundation and our own Pacific Northwest LFA Chapter to post  reminders about this annual awareness event.  Both offer important and convenient ways to help get your voice out there to policy makers, researchers and organizations instrumental in making our lives with lupus more empowered.

From the National LFA Office:

“Participate in the LFA’s Advocacy Day on Tuesday, March 16 – from the Comfort of Your Home!

 
As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16.  Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.
 
Here’s what you can do from home.

Send an email, call, or write your Congressman or Senator
Raise awareness by sending an ecard
Spread the word on Facebook and Twitter, or through your blog

Everything you need to know about doing one – or more – of those 3 options above is now available on the LFA’s Advocacy Day landing page. 
 
Remember, we really need you to make your voices heard on Tuesday the 16th.”

From our PNW Chapter:

“Another way to advocate:

Download “Lucy” on iTunes by March 15, 2010 to donate to lupus research

One hundred percent of the proceeds from each download of the Julian Lennon and James Scott Cook song “Lucy” on iTunes will be donated to lupus research thru March 15, 2010. The funds donated from the single are restricted to support the LFA’s National Research Program, Bringing Down the Barriers. Time is running out on the promotion, but it’s not to too late to spread the word, and encourage constituents to download the song.

You can promote “Lucy” in a variety of ways including outreach to local radio stations encouraging them to play “Lucy”, emails to your constituents, on your website, and through social media… We [are] also thrilled to share with you that Julian Lennon and the story of “Lucy” will be the cover story for the next issue of LupusNow, which should be completed by Mid-March.”

To download the song on itunes, go here

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Advocating for lupus isn’t limited to those of us who struggle with more severe forms of this illness.  It is puttting  your voice into the national conversation as someone who lives with lupus no matter what degree of progression. For someone you know who has this illness, who you can find if you simply ask anyone in your social circle.  The sheer nature of autoimmune disease is the inability to predict what your illness will be like tomorrow, whether your daughter may develop it through genetics, whether your friend will lose their job because of the health challenges they struggle with to remain on the job or the fact that one more person has to file for disability that you, the tax payer, will now have to support.

The healthier and sustainable we can remain while living with this illness, the better off our entire communities will become.  Take your part in creating a healthier community for all of us~

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UPDATE 3/16TH from LFA National Office:

Make Your Voice Heard Through March 19th!

Simply go online to the LFA’s advocacy action center and you’ll see a section called “Action Alert.” Click on the link called “Take Action.” Then, you’ll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you’ve completed your message, click “send message” at the bottom, and that’s it.

Please ask your family, friends and co-workers to take just a few moments to also speak to their Members of Congress, and tell them why additional funding for lupus research is so important!

(Image:  CHP website)

I forgot to post this earlier when I heard about it and the deadline is approaching very quickly.  Hope you know a youth who loves to take pictures and wants to express their thoughts regarding healthy communities!  Whether it is through diet and exercise, your environment or where you see problems needing addressed, the contest is about looking at the health (or health challenges) you see around you here in Oregon.

To celebrate Public Health Month in April, Community Health Priorities is hosting a Youth Photo Contest complete with cash prizes and public viewing opportunities in Portland and Salem.  The contest is open to any Oregon youth, ages 12-18 years old and all submissions must be to them by midnight on March 15^th! 

Here’s the link for all the great details and encourage your teens to put something out there.  If you are reading this blog because you live with illness or are one of the millions without decent health care, I have a feeling you can offer some inspiration to your young photographer. 

Community Health Priorities 2010 Photo Contest

Best of luck to all of you!

Here  is their invitation to you and a little information about what their afternoon plans to offer:

“The Oregon Chapter of the Scleroderma Foundation has announced that Dr. Catherine J. Markin – a noted specialist in pulmonary disease and critical care medicine at Legacy Good Samaritan Medical Center, and Director of the Legacy Pulmonary Hypertension Program – will present the 9th Annual Cheri Woo Education Seminar ’s keynote address scheduled for Saturday, March 13, 2010 at Tuality Health Education Center in Hillsboro. The free public seminar runs 10am through 2pm.

Dr. Markin will offer “Lung Disease in Systemic Sclerosis: New Insights and Treatment Options” as part of the chapter’s daylong line-up of expert presentations intended to increase overall education and raise regional awareness of scleroderma, also known as systemic sclerosis.

In addition to Dr. Markin, the seminar is scheduled to present Dr. Anna A. Bar, an Assistant Professor of Dermatology and Dermatologic and Cosmetic Surgery at Oregon Health & Science University.  Her seminar topic is Cutaneous Manifestations of Scleroderma and Laser Treatment.  Justin Elson, DMD, of Gentech Dentist Hillsboro, will speak at the seminar on Scleroderma and Oral Health.

Scleroderma (pronounced sclare-a-derma), or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The term comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Symptoms can range from extreme sensitivity to heat and cold to hardened skin to diminished lung capacity and disfigured face and limbs. Scleroderma can be fatal, and there is no known cause or cure.  An estimated 300,000 people have scleroderma, of which 80,000 to 100,000 people in the US have the systemic form of the disease.  Scleroderma affects four times as many women as men, usually between the ages 46 to 65.

The annual spring education seminar by the Oregon Scleroderma Chapter is always free and open to the public. Breakfast and lunch are provided with every registration.

For more information, and to register online .

If you have some time this Sunday, March 7^th, stop by the PIWD event being held at Portland State University and take in some local talent, resources and entertainment. 

Here are some excerpts from their media release via their website :

On Sunday, March 7, from 11am to 4pm, Portland State University’s Smith Center (1825 SW Broadway) “transforms into a colorful medium of woman-centered events and activities. This 35th annual Portland International Women’s Day (PIWD) celebrates the strength, value and diversity of women in Portland and abroad. Over 2000 attendees are anticipated to enjoy educational workshops, art exhibits, musical entertainment, and international cuisine.”

“The mission of Portland International Women’s Day is to provide opportunities for women, and the community at large, to discover similarities and learn from the differences in an environment that is respectful, inclusive, and supportive of the values and points of view of all women.  Since 1975, PIWD has fostered a uniquely inclusive and supportive environment where individuals can create crucial connections and sustainable relationships with female community leaders, educators, health care providers and artists.”

“Entertainers performing at this year’s event include Euphoria Studios, Portland Lesbian Choir, Jamie Stillway, Gypsy Caravan, Under the Radar Dance, and DJ Alligator Heart.  Interactive, open forum workshops featured women-focused environmentally sustainable body care, discussions on storytelling through documentary filmmaking, discussion of the actions of the International Council of the 13 Indigenous Grandmothers, creative communication using improv, and supporting our Central American sisters.” There will also be “many women-owned businesses are listed among the vendors, providing positive visibility and a collective spirit that encourages economic independence.” 

The event is FREE to attend and donations are more than welcomed.  Complimentary childcare is available and Portland State is easy to get to by MAX .

Portland International Women’s Day 2010 is brought to you by the Portland International Women’s Day Planning Committee.  For more information, contact Cassie Clements
coordinator@piwd.org and be sure join us (I’ll be there carrying around my usual apple.)

Arthritis Discoveries ~ Free Public Education Seminar

Tuesday, February 16, 2010
6:30 PM – 8:00 PM

Location: Bob Chisholm Community Center
1225 Avenue A
Seaside, OR 97138

This seminar will provide you with valuable information on arthritis. Common signs, symptoms and scientific basis of new treatments for arthritis will be discussed.

Guest Speaker ~ James Smith, M.D., Northwest Rheumatology Associates, P.C.

6:30-6:45pm ~ Registration & Dessert Buffet

6:45-8:00pm ~ Presentation & Questions and Answers

 Reservations are appreciated.  Please contact Janet Lamb to RSVP at jlamb@arthritis.org, 503-245-5695 or 888-845-5695.

The mission of the Arthritis Foundation is to improve lives through leadership in the prevention, control and cure of arthritis and related diseases.