When facing my lupus diagnosis, I sought out many books covering medical terms, confusing symptoms, current and potential treatment options - all to quench my thirst for conquering this disease single-handedly.  Early on, I didn’t recognize myself as a part of a medial team or a community.  Basically, my attempts to control my illness meant shutting off any communication that didn’t offer me any sense of personal control. 

Last month, I had the opportunity to review a new book on lupus that I believe, after reading it twice, would have saved me some valuable time, tears and energy if it were around when I first started my adjustment process in learning to live with illness.

The book is entitled Despite Lupus:  How To Live With A Chronic Illness (Four-legged Press, 2009) and written by Sara Gorman, who authors a blog under the same name.  I have been reading Sara’s posts for over a year now and have always felt a connection to her perspective on living with lupus by making self-supporting choices in living well.  When I received her book, I was thrilled to find the same tone and presence in her book as I’ve enjoyed on her blog.  She offers a comfortable blend of approaches including a ‘think-out-loud’ way of sharing her own personal experiences in adjusting to lupus and a casual, supportive style covering some practical tips, exercises, tools and questions as if you both (reader and Sara) are simply chatting over a cup of coffee.

Her book doesn’t focus on the medical information that can sometimes overwhelm us- especially early on in our adjustment process.  It is important to learn as much as we can about how our bodies work/don’t work, what our treatment options are/aren’t and what we can do personally to manage our symptoms.  However, coping and adapting to illness is complicated and requires addressing some of the emotional and behavioral choices or decisions we will face along the way.  This is where Sara’s book shines ~ its mission is to encourage the reader to look at their own personal roles in defining their lives with lupus and respecting their physical needs necessary to make their lives outside of lupus as fulfilling as they wish them to be.  She reinforces this by using the theme of communication throughout the book and shows how crucial it is in creating those fulfilling lives.  I found her chapter on communicating with doctors particularly valuable, as I believe the relationship between patient and physician is key in establishing healthy adjustments to and better choices regarding lupus early on.

Despite Lupus offers a great deal of information in a narrative style, rather than more of a workbook or structured format.   At first, it was difficult for me to see this as a ‘how-to’ book, simply because I am so used to other books leading me through steps that I could easily skip and exercises that I could blindly avoid.  Whether she meant to or not, her book’s format challenged me to read through, lulled by the sense that I’m learning from someone who “knows” what having lupus is like, only to discover that I had stumbled upon yet another skill-building technique I thought I had mastered the art of snubbing.  After a decade with lupus, I had grown jaded at reading the same tips and suggestions over and over, no matter how valuable I knew they truly were in coping.  A passage from Sara’s book perfectly describes my lupus moments or ‘fits’ I experience even today:

“…when life is forced upon you, without your consent, as your chronic illness has been, you panic.  You rush to defend yourself against the intrusion, fighting to preserve the comfort and control you’ve always known.  Not only are you seizing the past, you’re grasping the future.  You believe your plan is the only one that will lead to your desired destination, and anything else is a ruse.”    (Page 85) 

I have several books on lupus, or chronic illness in general, that cover the emotional and behavioral challenges we face within our self-concepts (or identities) when dealing with illness.  Sara delivers suggestions and steps in a way that gently encourages the reader to consider them, because they have worked for her.  I found that I was much more open to actually do some of them the second read through (I’m just extra stubborn), even when I knew they were coming up.  She offers them as a friend, not a guru, and that helps me remain open to trying.

Sometimes hearing other peoples’ tales about their lupus experiences can be frightening, deeply saddening and leave us more locked into refusing change than ever before.  I can assure you that Sara’s book provides clear pointers for newly-diagnosed patients and some valuable reminders to those of us already well-versed at lupus.  By learning more about her, she inspires us to step back and consider possibilities, communicate more clearly who we are to ourselves and others - and to define our lives to be well worth living, despite our lupus.

I had some trouble with my computer beginning Thursday and throughout this weekend, so I just wasn’t able to post a Happy Father’s Day in time~ I do hope all you guys out there, who are father’s, did enjoy yourselves along with those who love you. Always wishing you well~

I also had a post for those guys living with lupus - either directly or indirectly - that I wanted to put up along with my well wishes.  I have a couple of posts I need to make up, so the thoughts about how men ‘process’ illness will be in the next few days.

I would like to put up the information offered through the Lupus Foundation of America (LFA) and a few others about men living with lupus that might be of interest. 

LFA links:

Men and Lupus

How Lupus Differs in Men

Men and Lupus Webchat

Mens Support Links (alternative to the LFA):

Could I Have Lupus? Forum

LupieBin Forum (UK)

Misc links:

Lupus and Gender

Fertility and Lupus Treatments

“Should I stay or should I go now?
Should I stay or should I go now?
If I go there will be trouble
An’ if I stay it will be double
So come on and let me know”   (The Clash, album Combat Rock -1982)

I’ve been going to various support group meetings lately in preparation of my next article for the Pacific NW Chapter’s (LFA) newsletter ” In The Lupe! ” .  I have to admit it was also for personal reasons that I decided to dive back into exploring where support group participation fits, or doesn’t fit, for me. 

Generally speaking, support groups are defined as either professionally-led, therapeutic and focused groups with limited membership or peer-led, open groups focusing on self-help and outreach.  The ones I have been attending around here are peer-led groups for chronic illnesses and not specifically for lupus. 

When I was first diagnosed, my rheumatologist recommended that I join a peer-led support group to learn more about lupus.  Of course, he wasn’t able to provide me with any answers regarding the where, when, who or even why questions I had…he only suggested that I go.  He’s a great doctor, don’t get me wrong.  It’s just that at the moment of ‘impact’ when I’m told my life has changed, it would’ve been nice of him to have offered a little bit more. It was clear that our relationship was new, because his suggestion didn’t resemble at all how I coped with trauma or crisis at that time.  Sitting in a room with a bunch of sick people who I didn’t know was supposed to somehow help me?  I remember shaking my head and politely declining to go.  Besides, I didn’t seem as sick as other people were and didn’t think I needed to go. In reality, I was much more ill than I realized at the time.

There is plenty of research available on how beneficial groups are in offering us emotional and practical social support. Benefits from social support are not simply the information or kind words that we receive, though.  The benefits come out of the interaction that occurs between people, thus creating a reciprocity, or exchange, in the giving and receiving of support. How we receive and the quality of it is important, but it is even more important to understand whether we personally believe we will receive support and whether or not we actually do.  Support isn’t always the beneficial or positive experience we sometimes think it is, either - it can also be harmful or negative. These ‘negative’ experiences are usually the result of us expecting support and not getting what we need, making the sources of support we seek out vital in creating a positive experience. 

Participating in a support group puts us in a physical space that forces us to step outside of what we know as ‘comfortable’.  You may not want to take on more discomfort if it isn’t necessary.  However, when we reach some plateaus in our symptoms or confidence, we can resist building new strengths and skills.  Stepping into an unfamiliar situation or being among people we don’t know makes us question whether or not we will receive the support we’re looking for.  The relationship we have with ourselves is much easier to trust in than a perfect stranger.  Risking to invest in or build a new connection is usually at the heart of our resistance to participate.

My initial resistance wasn’t simply a matter of not being as sick as the others - really.  It was whether I felt I could take on trusting someone with all that I was going through.  When I am confronted with a crisis, I tend go inward.  In the beginning, I wanted some control in how much risk I was putting out there and so I decided that focusing on myself alone was where I felt strongest.  Eventually, my doctor saw how strongly I felt about that and praised my determination to do what was best for me.  Although a thriving support group is dependent on participation, regular attendance may not be as supportive to you as it is for another person.  However, taking part in a group from time to time offers you social support that you simply are unable to receive in any other social setting. 

I understand today just how valuable social support group participation can be, both through my personal experience and professional research. I no longer resist the idea of attending groups believing they don’t offer me anything I can use.  Instead, I believe stepping into a group and outside my comfort zone offers me an opportunity to participate in a process, creating a different sense of support whenever I need a little boost in living with illness.  Here are three suggestions I have if you still aren’t sure whether a support group is for you:

Consider your timing.  Personally, I wouldn’t recommend attending a support group immediately after diagnosis simply because the introduction to lupus isn’t an easy one…usually.  As research shows in trauma counseling, some time to ‘stabilize’ before talking about things is more beneficial to the healing process.  This is a good time to focus on you and your health to gain some balance by building your treatment team and strategy.  Seek out those individuals in your support network who can at least offer what you feel you need to get to there, such as a good listener, social and exercise buddies, etc.  Also, this is a good time to seek out books that ‘speak’ to you in a clear format, reliable content, appealing style and address similar goals.  Some doctors recommend waiting to explore the internet.  If you do choose to visit websites, blogs, message boards and social networks, be careful and always check with your medical provider before initiating anything new.

Here in Oregon, there are few lupus support groups to choose from.  In the beginning, you are needing to focus on managing your health and I have found that attending support groups for illnesses such as arthritis, scleroderma, or other illnesses that have an autoimmune focus are just as effective simply because we all share similar challenges, medications, physicians (rheumatologists).  Even though fibro isn’t technically an ‘autoimmune disease’, many people with lupus also have fibro and their groups can offer good support, too.  If you are somewhere that offers more than one lupus group, you have more options to find the right group that works best for you.  Let’s face it, being in a group is a complicated process and the goal is for everyone to believe they will be supported.  Find a group that motivates, listens and encourages you to live well.

Finally, I strongly recommend that newly-diagnosed patients, or people considering support groups as a management strategy, first take part in a chronic illness workshop .  These classes cover the primary issues, offer clear strategies and reliable resources that are beneficial in gaining some stability with your illness.  I found that attending a workshop this year didn’t offer me much in new information, but definitely reinforced those basics allowing me a chance to evaluate my current management strategies.  It also introduces you to living with illness less ‘public’ exposure emotionally through a smaller groups.

My next LFA article will cover the individual decision process, what my research has to say about groups here in Oregon and what general things to look for in a support group.  Here, I can sum it up by using the song lyrics performed by a group who also offers a very fitting description of the participation decision itself: The Clash~ 

If we stay (to ourselves) believing we can handle lupus alone, we are doubling our challenges in trying to remain ‘normal’ burdening ourselves further.  The very defensiveness we harbor through refusal, denial, persistence, anger or independence tells our over-reactive immune systems what?  “Fight“.  I don’t suggest waving the white flag, but I do recommend that you ask yourself “What am I really fighting and why aren’t I calling in reinforcements perched to help?”  They are waiting to hear from you, but you have to send them the signal.  Regarding groups, “What is the risk/are the risks that keep me from going?” 

If we go (to a lupus support group), then there will be trouble for us initially by moving into territory we already know to be difficult:  living with illness and what it does to us emotionally.  Although a good support group will incorporate many different aspects to the coping process rather than just the emotional components, even those of us Rocks of Gibraltars need to nurture those needs…whether we want to admit them or not.  Simply being in a room with others who share a life with illness affects us more deeply than we know.  It isn’t about being like the others or even uttering a word while we’re there.  It’s about being somewhere without needing to explain ourselves.

The only person who can tell you whether you should go or whether you should stay  is the best person to answer the question - you. Support groups can offer you valuable, unique benefits - the only thing you may be risking is merely an opportunity to sing a new tune.

I want to send out a warm-hearted “Thank You! “ to all of the wonderful people who contributed to our first annual “Our Voices for Lupus Awareness” guest blogging event this May.  We heard from several readers who found something they could relate to in living with illness themselves through blog comments, sites like Facebook and Twitter, emails and direct calls.

They stated that they feel inspired to take on new personal goals or aspirations including entrepreneurship, travel, creative endeavors, gratitude and service work, or to simply to take another look at lupus as less of a barrier and more as only part of their entire picture.

We anticipate adding to these themes by continuing our ‘open’ invitation to contribute here for bloggers, writers, patients, service workers, family and friends, medical providers and so on from the Pacific Northwest and beyond.  We also hope to expand to other themes that weren’t covered in May and look forward to reading and learning from all of you.

Although we had a few people from Oregon and Washington contribute to the dialogue, we are definitely aiming for more.  It is important for MLWT to hear what those of you locally are seeking and interested in regarding building your health support resources network.  From these communications, research, social and educational opportunities can form ~ some are already set for this Fall, based on discussions from our first year of operation.

If you missed any of the guests during last month’s lupus awareness event, here is a listing of these great friends below and we really encourage you to take the time to get to know them.  Some are artists and craftspeople. Some are creative career people managing their health as they pursue their passion.  A few are professionals who either work within businesses or service programs aimed to support individuals with health challenges within employment, policy or independent living.  There are a few authors who have books to offer encouragement, guidance or introduction into a life with a chronic illness.  Most importantly, every writer from the event last month offers practical tips, insights and personal experience in adjusting to health challenges.

We had a wonderful variety touching on so many aspects in living well~ and we’re honored to have hosted these writers:

MLWT 2009 Lupus Awareness Month Guest Bloggers in order of appearance:

Christine  Eco-fashion artist , authors  Lupus Girl (blog), owns Windy Hill Fibers (business blog),  Windy Hill Fibers (etsy.com), @windyhill (Twitter)

Kim Nault  Patient advocate thru Lupus MCTD Foundation , Poet/Essayist, radio blog host , @LupusMCTD (Twitter) 

Tonita Webb    LFA- Pacific NW Chapter Board President , @LFAPNW (Twitter)

Carolyn and Jerry Glein   Directors of  My Lupus/Fibro Support Group , editors of their international newsletter and MLWT Advisory Team Members,  @PokerDiva (Twitter)

Kathy  Tech grad, ME/CFS Advocate, offers vintage items on Tangelobaby, @tangelobaby (Twitter),

Doug Franklin  Artist, MLWT Advisory Team Member and Vocational Rehab/Disability Specialist

Denice Beal  Author, Artist and on-going MLWT Guest blogger

Leslie Rott   PH.D Student, Univ. of Michigan , chronic illness advocate and speaker, authors blog Getting Closer to Myself 

Jennie  30-something career girl extraordinaire, authors her blog Taming The Wolf , @TamingtheWolf (Twitter) 

 Maureen  entrepreneur  Birdsall Interactive ,  @birdsall (Twitter) 

Marilyn Morris  Editor, Author    One of her books Diagnosis Lupus: The Intimate Journal of a Lupus Patient and blog The Lady with Lupus

Rosalind Joffe  Chronic Illness Career Coach (cicoach.com), Author of her book Women, Work and Autoimmune Illness: Keep Working Girlfriend!  and her blog Working with Chronic Illness , @WorkWithIllness (Twitter)

Kathryn Heatherly  Ph.D candidate, Vocational and Rehabilitation Specialist serving Oregon and SW Washington, on-going MLWT Guest Blogger,  Contact her at 1 (888) 355-5539 or by email at kheatherly@1hcc.net 

Jessica   world-traveller , authors her blog Notes from the Garden Spot of the World (link),  @gardenJess  (Twitter)

Sara Gorman  New Mom, author of new book Despite Lupus: How To Live Well With a Chronic Illness , her website/blog Despite Lupus

We are so inspired for 2009 here at MLWT - are you?  Carpe Diem!

I am so excited to present my blogging friend Sara as our final Guest Blogger for MLWT’s ” Our Voices For Lupus Awareness ” event this May.  I have been reading her blog for more than a year now and she shares a perspective towards living well that is what MLWT represents…stepping towards a life that consists of many things, with lupus being only one of them.

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Sara Gorman, author of Despite Lupus: How to Live Well with a Chronic Illness, talks about her new book and her experiences with systemic lupus:    

What is the book, Despite Lupus: How to Live Well with a Chronic Illness, about?

Despite Lupus outlines the steps I’ve taken to regain the health and wellness I lost due to years of struggling to overcome lupus. After my diagnosis at the age of 26, I refused to admit that my busy lifestyle and indomitable attitude were exacerbating my illness. It took four years before I realized that my strategy of pushing through the pain wasn’t working. In fact, it was ruining my chances for a long, productive life. Thus, I decided to stop fighting life, and start living it. I made it my top priority to start living well with my illness, doing everything I could to proactively make my life better. The book describes the steps I took to reach that goal.

Why did I decide to write the book?

Once I started seeing the physical and emotional benefits of the changes I was making - cutting back my hours at the office, postponing my plans for pregnancy to start a more aggressive drug therapy, and cutting off my hair (or what I had left of it), for example - I realized that I had a story to tell.

My life with lupus was improving and I was the one making it happen. It took a lot of patience, effort, and keen self-awareness, but it was worth it. I was suddenly enjoying life, not dreading it.

Since my diagnosis years earlier, I had been searching for a proven, proactive approach to dealing with lupus, but could never find anything. I was frustrated by the conflict of emotions I experienced - the feelings of vulnerability and desperation. I wanted to know, not only why I was experiencing these emotions, but what I could do to prevent them. Once I started to figure it out on my own, I wanted to enable others to do the same by documenting the steps I was taking to make that happen.

What is the key to living well with a chronic illness?

There are several essential steps to living well, but the most critical thing is to admit that you’re worth the effort. You owe it to yourself to live well - in fact, you deserve it. For all too long, I was doing myself, my family and friends a disservice by ignoring my symptoms and pretending like lupus wasn’t affecting me. My body was literally falling apart, but I tried to act as if it wasn’t. Not only was I hurting myself, I was affecting those around me by not valuing myself enough to stay well.

Do I still struggle to make good decisions to live well with lupus?

You bet! Every day at 3:59pm, when I head up to my bedroom to take my 4:00pm nap, I think, “Why do I have to take a mid-day nap in order to make it through the rest of the day? No one else has to do this.” But, before I get too upset about it, I realize how wonderful it is that I’ve figured out a way to manage my fatigue. I used to lose my entire evenings to sheer exhaustion, but not anymore. By taking a measly hour and a half out of my day to rest, I can function like a normal human being for the remainder of the day. I get my evenings back and the chance to feel normal again - which is priceless.

Where is the book available?

Feel free to stop by my website, www.despitelupus.com to read an excerpt of the book, check out a few reviews, and catch up on my blog. Hopefully, you’ll like what you see! The book is $19.95 plus shipping. Feel free to email me at sara@despitelupus.com with questions. I look forward to hearing from you!

My life with lupus.  Hmmm, I’m not even sure what that means to me just yet.  Last year I began the journey to a lupus diagnosis. I’m not quite finished with the diagnosis, but we’re close.  Anyway, I’ll call it a journey since it started with a journey.

Last year I took a girl’s trip with my closest friends.  7 days in Belize.  Leading up to the trip I’d not been well for months, and likely longer than that.  Low-grade fevers for years maybe, ramping up to extreme tightness and pain in my joints.  My hips in particular were getting worse.  A family history of early arthritis let me shrug, pop a few more Advil, and try some stretching exercises.  The pain interfered with work, sleep, and life in general, but I shrugged and kept going.  Until midway through my trip. 

I realized one morning that none of my 3 girlfriends were literally struggling to get out of bed.  We were the same age, similar fitness levels, and my friends weren’t catching concerned looks from the tour guide as we scrambled up boulders in a water filled cave.

Did he catch my wince? Was it my gracelessness as I pulled myself up the rocks?  My quickness to tire?  By the midway point of the trip I was measuring my pain level at a 6 on a 10 scale, and teetering over into the 8 range at night as relayed in an email to my boyfriend back home.

An email where I promised to get it checked out when I got home.  Extreme fatigue a few weeks later finally led me to go to the doc to see if I had West Nile - a diagnosis my boyfriend had just received after a hike in a local state park.  Negative.  Within days my hand had swollen with a pinkie joint the size of a golf ball.  Gout? Trauma?  All ruled out, but finally with a combination of my fevers, exhaustion, and x-rays I had a referral to a rheumatologist.  Combined with a family history, and pretty distinct symptoms he seems pretty certain of the diagnosis.  I think.  I’m on a 10 month wait for a 3 month follow up.  That final test he wanted to check in October?  I’ll hear about the results in June. 

In the meantime I planned another trip for the last week of April.   This time with my boyfriend of 5 years.  A new kind of adventure travel for us. Again to Belize, his first trip out of the country, with a side jaunt to Guatemala.  New way of travel in many ways.  Me determined to avoid any flares caused by overdoing it, sun exposure, etc, and coming from a lower fitness base than the year before.  Him with a chronic kidney disease fearing food and waterborne illness and what it could do to a pair of kidneys that may only have 20 more years left as they are right now. We researched sun protective shirts and washes, invested in loads of sunscreen, borrowed a water filter although we were planning on traveling mostly in areas of safe water.  Our trip was planned to involve air conditioning, slightly less rustic rooms, and lots of cushion for rest days if needed.  I like to think that the planning allowed us to live in the moment during the trip.  We had a blast.  Snorkeling, Mayan ruins, zip-lining, monkeys,memorable bus rides trying to decipher the local slang, and good times catching up with old friends.

Even better my boyfriend has caught my extreme case of wanderlust so I think we’ll try it again in the future.  The list of places is growing faster than we’re going!   No matter the diagnosis, I think that’s what we’ll do.  Research, plan, and go for it.  Seems like a great way to tackle a trip, or a diagnosis.

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Jessica is a 31 year old who dreams of travel to faraway places, loves to blog at  Notes from the Garden Spot of the World, Twitter as @gardenJess and read.  Her brand new kitten keeps her time occupied, as does her garden.  She welcomes new readers and new friends.

As a follow up to Rosalind’s post on tips to consider when initiating a conversation with your boss, we wanted to introduce you to a new local contributor, Kathryn Heatherly.   She is a disability management specialist and vocational expert here in the Pacific Northwest (PNW).  We look forward to learning more from Kathryn about resources, services, policies and recommendations through her future posts that may provide even more support if or when the time comes to step away from your current employment and begin to consider your future.

“I appreciate the opportunity to share some of my background with your members who may need representation for matters concerning Social Security Disability (SSDI) and/or Supplemental Security Income (SSI).  As a certified rehabilitation counselor for over 27 years, I have been engaged in private practice in Oregon and Washington since 1980.  I am also a licensed professional counselor with the state of Oregon, as well as a certified disability management specialist.  I have extensive experience as a Vocational Expert with the Social Security Administration (SSA) and am certified by the Department of Labor to provide vocational services to federal employees.

In 1995 I became a Vocational Expert with the Office of Disability Adjudication and Review (ODAR) with SSA.  In that role, I gained valuable experience providing testimony to assist the Administrative Law Judge (ALJ) with determining whether folks were able to work, under SSA regulations.  After over 13 years as a VE for SSA, I followed the counsel of several ALJs who recommended that I begin representing clients in their applications for SSDI/SSI. 

Most all of my clients are reassured to have access to an actual counselor who is well acquainted with the process upon which the disability determination in SSA is based:  ability to work.

I have extensive experience working closely with clients whose diagnoses include lupus and fibromyalgia, conditions that require the expertise of a professional who understands how the resulting symptoms so often prevent many people from sustaining work.  For many of my clients who suffer from these diagnoses, the real challenge is not found in getting a job, but in keeping the job. 

I have just completed my coursework for my doctorate in Human Rehabilitation, and look forward to concluding the dissertation requirement for my PhD in about a year.  While this credential certainly isn’t necessary or required for my work as a representative, many ALJs recognize the degree of proficiency afforded by years of such study.  It will be a powerful and respected credential for my clients who deserve the best representation available.

I serve clients throughout Oregon, Washington and Idaho and may be reached toll free at 1 (888) 355-5539 or by email at kheatherly@1hcc.net ”