My goal for the latest library excursion was to pick up references to begin Fall prep on MLWT Target Practices, some new classes and to catch up on writing those over-due articles.  What I ended up leaving with was a book, found by accident, and an absolute treasure that I want to share with you today. 

Reading and writing daily about life with illness can sometimes be, well, depressing and too close to home.  Yet, I struggle with reading fiction while the deadlines, emails from clients and project collaborations taunt me from my desk.  Reality, in many forms, just crashes into any story where I’m trying to lose myself.  You would think that the last book I would choose when trying to escape would be one about illness.  Perhaps you have more sense than I, because that is exactly what I ended up doing.  I am so glad I had this lapse in ‘better’ judgment, though, as I would have really missed out.

Dr. Jaime Weisman’s book As I Live and Breathe: Notes of a Patient-Doctor  (North Point Press, 2002) caught my attention for two big reasons:

1) I related immediately to the cover photo, as someone who has also received medical treatments for a faulty immune system; and

2) It was written by a doctor who is spending a little time on my side of that tube. 

I half expected the book to be written in a way to get me to feel compassion for a physician who falls from grace.  What I discovered—no, received—was another lesson in not judging a book by its cover.  Once again, I go in for one purpose and leave with another.  I expected revelations about a doctor’s new perspective and emerged with an appreciation of the human spirit. 

The absolute beauty of this book, for me, was in her writing.  Ms. Weisman was a patient first and headed towards a career in writing.  However, her turn towards medicine was a gift to many of us and still offers a reassuring voice through her practice or her writing.  Although she touches on medical issues and some of her own struggles getting through her days as a patient, I didn’t feel burdened by grief or enlightened about how best to navigate the medical puzzle.  She leads the reader both forward and backwards in time, skillfully tying together the thoughts and experiences that make up the cycles of experiences we all go through, healthy or not as healthy.  Her essays gracefully describe the complexity of her condition as a reference point for the reader, rather than as a badge of honor.  From that reference point, I wanted to journey with her and absorb her experiences in order to find a place or a word to help describe my own.  Her memories, poignantly expressed, resonated within me as a person first and as a patient second. 

This book is grounded on the importance of relationships.  All relationships, hers ranging from the professional ones she establishes as a physician and the personal ones she cherishes as a daughter.  Even the relationship she develops, continuing over time, with her body is testimony to the old adage “becoming your own best friend.”  The relationships she takes part in as a patient herself, with other patients and her medical team, are keenly explored and serve a models in finding your own best sources of support. 

After finishing this book, I am left with a sense of comfort.  There were so many passages that caused me to stop, mid-paragraph, and really pay attention to what she was saying.  Or, sometimes, to simply to pause and release some pent-up tears.  One quote, in particular, took me back to my own memories following my diagnosis over a decade ago.  At my ten-year appointment, where kidney failure and dialysis are quite possible for 50% of us with lupus, my doctor asked me if I realized how sick I had been.  My answer, as I’ve mentioned here on this blog before, was “no”.  Ms. Weisman puts my feelings about what I did know in the early years of my illness in the best way possible and answers my doc’s question better than I did: 

“The cure for the fear of dying is living.”   (Pg. 210) 

This book, and Ms. Weisman, herself, exemplify how powerful working towards a cure can truly be—for all us.

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Note:  I received no compensation for reviewing this book. 

“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!

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Healthcare.gov is coordinating this insurance plan that has been offered to all 50 states as a means of meeting some of the immediate needs until the entire 2014 health care reform law will take effect.   Some states opted out of using the allocation funds due to their concerns about receiving enough funding to cover the insurmountable health care costs facing their high-risk residents.  Oregon is one of the states that opted in to using the funds for this new insurance plan and you can find out more about what  the program might offer you by going to this Healthcare.gov link. 

I know that there are plenty of people in this high-risk category and that it would be impossible (on many levels) to create a plan that offers something for everyone.  Although my situation meets the criteria to pursue this option, the fact is that I would end up paying more per month than I do now and I simply can’t afford it.  That isn’t by choice, mind you. 

The whole idea behind insurance is that we put money into a bucket per month that is supposed to insure us from future medical expenses and I get that.  Paying something each month to know that I will have some help paying for appointments, procedures and (heaven forbid) emergency situations is a wise investment.  Here’s the catch, however.  I paid for years when lupus hadn’t even arrived yet into a large insurer’s pocket and rarely needed any medical services.  I was young, healthy and taking the best care to make sure I stayed that way, yet I still paid them for this unused care through my employers totaling several thousands of dollars.  Decades later, and without warning, my health took a turn and I needed that coverage.  Although my employers and plans had changed, this company had my name and track record on file.  In spite of the money I paid and with little cost to them from their profits via my investments, they threw me to the curb.  Actually, they threw me to the curb AND sued me for $10, 000 claiming I knew I was sick before I signed up for my health plan.  Hello, …my doctors didn’t even know what was going on until my kidneys shut down.  But, that’s a nightmare best left in the past. 

It is the past, however, that has put me where I am today.  I cannot get insurance, even if I could afford it.  There are many things about the new Affordable Care Act taking effect in 2014 that has me worried.  As wonderful as it feels to think that I will have coverage, even with my health history, I still don’t know how I will be able to afford it.  Having options is one thing, but the question about who foots the bill—our government or myself—is what haunts me.  I agree that we need to develop a healthier country and providing more health care options is a great step forward.  The health care costs are still way too high, though.

Do I want to, once again, put what cash I have into my health care bucket only to have an insurer avoid returning my investment when I need it?  Will they hike the expenses and/or claim that I did something that disqualifies my right to the care I invested into?  Worse yet, as this news segment points out, what if I put into this plan and they run out of money before I need it?  Let’s face it, insurance may be profitable, but managing my own health care is not. There’s something really wrong with that.

As I wait for the industry to be seriously overhauled, I focus as much as I can in making the best choices I can every day to avoid future health woes.  There’s no guarantee either way, whether I pay an insurer or myself to put into a savings account, that I will have the care I need when I need it.  I can’t control what the insurance companies do, what the government will or won’t provide or how my lupus will progress.  There are a few things I can eat, move, try, think and prepare for that might cost me less down the road.  Even that sometimes costs me a pretty penny, but well worth the effort. 

The gal in this news segment, Ms. Eaton, who is living with the heart condition represents many of the people I work with every day.  She also represents my situation very closely.  Many of us aren’t disabled, are still working, take care of ourselves and are willing to pay what we can.  We understand that health care will never be free and that preventing illness would be ideal.  We also know that we don’t ask for diseases like lupus, genetic or congenital conditions, see ourselves as victims or live to frustrate the medial establishment.  We are simply going to have to do what we can with what we have until “health” is as valued as “profit”.

Where are you in all of this?

• Have you lost your health coverage through loss of employment or cutting costs at work?
•  How well can you manage your illness without care?
•  What are some of the things you let go in order to manage your health?
• How do you expect to handle the 2014 shift?

 After taking a look at the news segment link and learn more about what the preexisting insurance plan offers, I would be interested in hearing what you think.  Share your story, too~  you’re not alone.

Yesterday, I hosted an Independence celebration. Not only for our country’s independence from England, but also as a send-off party for three of the five high school graduates on our street corner.  The boys couldn’t make it, but the three girls and all their siblings (who also are all girls), enjoyed their transitioning from the kiddie table of life to the adult table. 

 As I scurried around making sure all my guests had food, beverages and an enjoyable visit, I:

• slammed my shin into a chair and the door of the dishwasher
• smashed my finger while closing a cupboard door
• hit my head on the deck when underneath while getting the folding chairs
• bit my lip while eating 

And the pièce de résistance? 

Nine of my piggy’s were being cooperative, but the big one on my right foot wasn’t paying attention and jammed itself into a deck stair.  You should see the glorious colors it boasts today for its miscalculation.

You may be asking what my clumsiness has to do with lupus or Independence Day.  Well, it certainly illustrates what a lack of mindfullness can lead to. 

How many times have I been bewildered listening to my mom complain about stubbing her toe on the same table she did the day before?  Over the years, I was unable to fathom why someone would keep doing that over and over again!  She knew the table was there and had the broken toes to prove it.  Yet, she continued.  I am beginning to realize, now, that it isn’t about not knowing where the table is at all.  It is about how our bodies and our brains tend to lose a sense of cooperation as we age.  We know in our minds that the table is there, but the communication with our toes gets lost somewhere in the translation as life, medications, and aging catches up with us. 

I’ve been doing a lot of reading lately about kinetics , aging and our brains and symptoms of health trouble.  That’s mainly because I want to learn as much as I can to care best for my aging mother.  However, as I continue to read and learn, I’m developing an understanding that all of what I’m preparing for applies to me, too.  I’m not as young as I once was, but the increasing bouts of clumsiness are pointing to some of my life’s influences that I am letting get the best of me. 

I know this is a Canadian senior-focused site , but it breaks down some of the more common reasons for clumsiness and you will see how much of this applies to us at any age, lupus involvement or physical condition.  This article also gives us some pointers on what we can do to prevent it, which brings me back to that independence and the postponement for this Wednesday’s gathering. 

Accidents happen and my day yesterday doesn’t necessarily mean that there is anything seriously wrong with me.  However, I am beginning to notice some trouble in maintaining my mindfullness and focus during the day.  When we are younger and/or not under the influence of stressors and meds, paying attention is so much easier.  We don’t realize how much work it takes to be that way until we have days like I did yesterday.   I do know that I won’t be able to support my mom’s (or my even own!) independence if I don’t start intentionally building some cognitive strength along with my physical strength.  To get through our days safely, we really do need both to be on board.

So, once my toe heals, we will be having that Target Practice gathering…if for any reason, to better avoid days like my yesterday.

 Hope you all are enjoying your weekend without any injuries, pain or discomfort~ take care!

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.

Last month, I went on a hike through Tryon State Park with my new friend, MLWT Guest Blogger and Acupuncturist, Becca Seitz .  Despite my constant and intense headaches weeks prior, I felt the need to get outside and move.  Preferably with someone to talk to and in beautiful surroundings, which Becca and Tryon Creek provided effortlessly.  During our walk, I was telling her about my headaches and being buried under a great deal of stress.  I had several theories for my throbbing temples ranging from lupus (of course) to changing barometric pressure.  She shared with me some philosophy, which I plan on hitting her up for in a future blog post, that struck a chord in me and I’ve been mulling it over daily since our walk. 

She explained that this philosophy (I believe it is within Chinese medicine) describes a symbiotic relationship between us and trees that involves an exchange of stress.  We often hear how detrimental stress is to our health and wellbeing, causing all sorts of problems within our own bodies and spreading to other peoples’  ‘bodies’ we share our days with.  What we don’t always consider is the wood element in Chinese medicine, also present in Western pharmaceuticals.  Trees have been a part of treating illness for centuries when it comes to medicine, but there is more to that relationship than just the ingredients of the bark we absorb.  The trees are believed to absorb from us, too.  Becca brought up how stressful conditions actually make trees stronger and, if you garden at all, you know to not to tie up your new tree seedlings too tightly to their pole.  The movement from the wind and other forces actually strengthen the trunk during its development .  As we walked along the path through the trees, we spoke of this wonderful idea about unloading the stress we have within us during our walk to make us healthier and that, in turn, we could actually be benefitting the trees around us by making them stronger. 

I’ve been pretty frustrated with the weather here this Spring, as I suspect many of you have been, too.  I thought that it could be because I’m back to sitting in front of the computer for longer periods of time working on several big projects.  Maybe it is because of the gray skies leading to my darker moods, aches and poor sleep.

It could be that I just miss time with my friends and trees, my fellow stress magnets. 

This weekend promises some heat and sunshine, and not a moment too soon. My oldest daughter is graduating from high school and she will be the first to be leaving the nest, so there has been some stress building up within me over that, too.   I know I will be hitting a trail as soon as possible to relieve some pressure and make something good with it, or I will undoubtedly explode. 

Today, I came across a link that leads the reader through a meditation linking trees with de-stressing .  I did it and, surprisingly for me (I don’t like meditating), I actually felt great afterwards. I’d put it here, but haven’t yet figured out whether I need to gain some permissions in writing first.  There’s something else to stress about!  The gist of it is just to stretch, breathe deeply and move gently as if responding to wind.  You can take it from there, but it isn’t anything new.  Just be sure to recognize your own limitations and don’t push yourself too hard.

Wishing all of you a more gentle breeze today and a wonderful weekend~

Monday was a day set aside to reflect on personal sacrifice, dedication to values, making commitments to those we share our lives with and things to believe in.  It was a day when we said “Thank You” to all those who have, and continue to be, on the frontlines for us all.  

As I prepped my dedication to my grandfathers who took their place in WWII, one sent against his will to the Russian front by Hitler and the other who willingly left his home here to fight against all that Hitler stood for, I also sent my thanks to the many people I have had the opportunity to talk to these last five months.  

I have been pretty absent from the blog here, my Twitter and Facebook accounts, the newsletters and blog carnivals I usually write for, the book discussion group and other social networking groups I belong to.  I feel bad about losing touch with the many wonderful people I’ve grown to love hearing from.  However, I knew this January that it was time to get out here locally to do much more person-to-person outreach work in order to learn as much as I can about all of you living here in Oregon and SW Washington.  I know I’ll be back online to catch up with my friends eventually, but I also know that there is only so much time and energy I have to work with.  Right now, it’s time to get out into the local trenches and begin getting a clearer picture of what our health battlefield really looks like here. 

Over these past months, I have had conversations with individuals who live with illnesses of many types and have heard the same words used by them as I have heard referring to this weekend of remembrance: 

“I have lost someone dear to me who fought as hard as they could against lupus.”

“I walked into that appointment as one person and came out of it as someone else.” 

The symptoms change all the time and I never know when they’re going to hit!”

“The problem is, it’s like living with an invisible enemy that only I can see.” 

Monday also marked the end of Lupus Awareness Month, which I was pretty absent from participating in this year, too.  Some of it was in response to the lack of entries to our awareness event this year.  Last year’s event was amazing, while this year’s fell on deaf ears—even the ears of my closest health blogging friends.  In fact, it appears that many fellow health comrades have been MIA right along with me.  Or, dare I say, outright deserters?  If we have a choice to step out onto the battlefield or pursue different paths that bring ourselves peace and joy, why would we choose battle? 

There are some strong similarities between war and illness, which is why you will often hear military speak used in health publications and public awareness campaigns.  There is something admirable about making it through formidable health scares and wearing our ordeals like badges of honor.  For those of us who see ourselves as lupus veterans, we wish to tell our stories because getting through it all truly pushed ourselves into situations we never knew we could possibly survive.  And, again as war veterans do, we sometimes have to deal with the questions and judgments from those who believe that our stories glorify something ugly and unnecessary.  The judgments are harsher for those who either willingly sign up to defend or for those who seem to have brought on their health challenges through poor choices or habits.

When one is drafted into a war that we don’t understand or drafted into health challenges we don’t understand, experiencing those barriers put up by others is difficult to take and quite painful emotionally.

When we are put into situations that are as harsh and sometimes brutally real as both war and illness can be, being able to speak openly about our experiences are more about our own survival.  Getting through things we never thought we would get through gives us those badges of honor. We need to acknowledge those hardships, because they become concrete parts of our identity and never truly leave us once they are within us.  We all have different levels of tolerance and the capacity to get through a scary experience varies from one person to another.  When we have had particularly traumatic experiences, the need to work through them emotionally does require using our voices to release the thoughts, fears and hurt we go through.  We need supportive reassurance to help us understand that we have either done or been through things that we truly didn’t deserve.  For those who seem to deliberately walk into harms way, there are belief and value systems that are so deeply embedded into who we become that choice isn’t really what happens within us at all.  It’s simply acting upon what we know and feel to be true.

In any event, judgments serve no purpose in supporting each other through the ugliness that life can often put us through. 

I have come to appreciate even more how important just listening to someone’s experiences offers so much insight. Not just about the person telling the story, but who I am and how their experience does apply to my life as well.  Even without going through their battle or seeing their viewpoint from where we stand, we never know what we are capable of until we have to be there or make those difficult decisions.  In fact, choosing not to make the difficult decisions can cause even more pain for ourselves and others.  For those of us fortunate to not having to see ugliness firsthand, we forget how much we benefit from those who do.  We learn from them that we need to work harder in preventing those situations that do so much harm.  We learn that it takes a great toll on those who have to carry that ugliness and loss around within them.  It also teaches us that we all share one experience—the human one—and it requires finding hope within every experience to keep us all going. 

Thank you to all the wonderful ladies who have spoken with me these past weeks.  Thank you, veterans of all types of wars, who did what so many of us didn’t have to or couldn’t bring ourselves to do.  I recognize the prices you have had to pay so that I might learn. 

I honor your courage.

Her post reflects many common thoughts and threads about support groups, be them online or in-person, and I’m glad to see she’s putting her thoughts about this issue out there.  With the increasing availability of online support resources, I’ve been tracking to see trends in how in-person support groups will fare.  Although we would assume that everyone is online these days, you will be surprised to know that we actually use the computer less than other countries and I regularly hear from people when I’m in the community that they don’t use the computer for much of anything other than online banking.  As more people catch up with the idea of using Facebook, Twitter or other online social networking sites, I am watching many of the health veterans that I have followed for the last few years dropping off the radar.  There is a changing of the guard, so to speak, with new writers and new voices being added to the conversation of chronic illness advocacy and support…just as it should be.  One voice can’t cover it all.

That’s where I think Leslie’s post brings the idea of support groups as an option to help cope with illness mirrors this change in what we’re seeking in support. 

I did a local research study some years ago for a health foundation here in Oregon to learn a little about lupus support group participation.  What was important about my study is that I also interviewed people who chose not to attend groups, which usually isn’t the case in support group research.  One result from my study showed women who chose not to attend lupus groups had positive views of groups, but didn’t think they needed them, because they had enough family support.

What I discovered, though, is that they worked very hard to not burden their families and sought their emotional support needs from their doctors.

  Anyone here have a 10-20 minute appointment with their doc to sufficiently address their emotional needs?  My guess, and from what I hear from many people here and all over the country, is no. 

What I found, and what I’ve experienced personally in attending groups and living with lupus myself, is that support is a term we all need to define for ourselves.  We also need to recognize that our needs aren’t fixed, but change and adapt.

  I would have to say that the key is in determining what works for you and to make sure that, whatever your support need is at a particular moment, you match it with the right type of source to make it effective.

The wonderful thing about support theses days are the amazing number of options that are available, that weren’t available even a few years ago.  If you don’t want to attend the groups in person, then don’t but be sure to ask yourself what it is you do need.  If you aren’t making a connection with the group you are attending, then seek another to try out.  Personalities, facilitator skills, content and convenience are all factors to consider when opening up your life to others.  If you can’t find a specific group in your area, say a lupus group, then consider attending another group that is similar.  For example, I frequently recommend the local Scleroderma support group to people living with lupus here in the Portland area as a wonderful option, even if it isn’t specifically for lupus.  That’s one reason I work closely with them as a resource partner, because they have their groups open to anyone and the health challenges between people living with scleroderma and those with lupus have more in common than are different.  If you’re in the Portland area and want a supportive environment with an amazing bunch of people and terrific speakers/activities, stop by and meet them .

Online support is great for those who need the convenience or anonymity to reach out to others in time of need.  The more variety we have in our support sources, the more likely we will be able to match our needs with something that works and get us back on our feet much sooner.  There is no right or wrong support resource—only the right or wrong match. 

I would love to hear from you on the types of support sources that you use or what types of support you’re looking for and can’t find, especially if you live here in Oregon or SW Washington.  My goal is to fill some gaps among services already out there.  Your voice will help some of those options become available. 

Thanks, Leslie, for contributing to this important conversation~