Here are the three community requests and the responses I received – thank you to those of you contributing to the discussion!

Request #1: Some suggestions on how to respond to family/friends who question the inconsistencies of our symptoms (for example, “You were fine a half hour ago!”)

A few people recommended The Spoon Theory, a familiar tool using something tangible to reflect a measurement of how much energy it takes to get through a day.  Although not everyone with lupus experiences challenges with fatigue, using spoons (or I’ve also heard people use other things like tooth picks) is a good way to express loss that others can relate to.

On a similar note, I recently learned of a communication tool that a dear friend, and organizer for the Portland-area Fibromyalgia/CFS support group , Tamara uses to give her husband a signal for the day regarding how she’s feeling.  When her clear jar is full of the polished pieces of glass, she’s doing great.  As the day goes on, she removes pieces as needed and, without saying a word, he ‘sees’ where she is at a given time.  What makes this a wonderful way of communicating is that they both developed this language together and by taking out the need to exchange words taxes her less and strengthens their relationship more. Co-creating a communication tool that speaks clearly and compassionately is something maybe to ask your friends to take part in.

Of course, there is the standard communication tool of “I feel…” messages, as I was reminded by a graduate of the Living Well with Chronic Conditions workshop, Laurie.  These messages, with practice, help take some of the defensiveness out of a situation by focusing more on how we feel or the concerns that we have when something is said or done.  In the situation that prompted this question here, the member who sent me the email felt defensive immediately when her sister-in-law couldn’t understand what happened within a half hour that changed her energy levels.  She snapped back and wished that she had a better, and cleverer, response that wouldn’t have led to hurt feelings all around.  Here is an example of how a conversation might happen and how using these types of messages can make the same conversation go a little better for everyone:

Without an “I” message –

Sister-in-law: “You were fine a half hour ago!”

MLWT member: “So, what are you saying? That I’m making it up? Thanks for the compassion…”

With an “I” message –

Sister-in-law: “You were fine a half hour ago!”

MLWT member: “I feel like I need to defend myself when I can’t explain how much my body puts me through.  I really want to figure out a way of telling you how I feel so that we could understand each other better.”

The key here is that the MLWT member focuses on what she is feeling, thinking and wanting without using those dreaded “You” messages that feel great in spewing to others, but cause emotions to get away from us… leading to defensiveness towards everyone.  Whether the sister-in-law commits herself to actually help figure out a way to better communicate is out of the MLWT member’s hands.  First, and foremost, the MLWT member gets what is on her mind off her chest and maintains a sense of calm (managing stress) while coming up with an idea to ‘fix’ the situation (proactive and constructive). These messages may not feel very natural at first, but taking that extra minute to focus on taking care of you gives more opportunity for positive results than there would be otherwise. 

Finally, MLWT member, Janice, simply stated:  “Tell her to just smile and nod – people will never really understand what we’re going through.”  Good point, Janice.

Request #2:  Kitchen products that have good grips and are light weight

Here are some responses I received to this MLWT member request:

-OXO products

-Kitchen Kaboodle sometimes has great little tools, or any senior living source (Gladys)

-Arthritis Foundation website sometimes mentions products (Laurie)

Anyone else?

Request #3:  Any books that help mothers be supportive to their children who are struggling with chronic health challenges (preferably non-clinical)

I’m still compiling, but Universityof Michigan offers a great website that covers some really important points that you may be interested in.  It isn’t easy to find sources covering illnesses like lupus or fibromyalgia, but consider seeking out books and websites that cover areas like cancer (LOTS of books available).  Even terminal or hospice sources that discuss caretaking for communication tips. Of course, the National Lupus Foundation is always open to hearing your requests, offers topics like this in their webinars and has a book recommendation list  you may want to check out.

If you’re on Twitter and have some additional resource ideas, use #CIbook within your tweet and I’ll find it!  You are more than welcome to share them here, as well.

The Winter/Spring MLWT Musings enewsletter will be out in late February, so if you have any thing you want to put out there to the community members to help problem solve an issue, email me here and I’ll get it into the next edition.

I offer both in-person and online Discovery Sessions that focus on wellness – not just illness, but the overall concept of health as “…a state of complete physical, mental and social well-being.” (Straub, 2012)  If someone wants to look at their relationships, their work, their feelings about their health challenges, or simply wanting to open up to learning more about what is going on “inside”, the Discovery Sessions are a quick, easy and non-therapeutic (meaning they aren’t therapy) activity to tap into your intuition.

For PFAM, I did a session myself on addressing the theme on using images to ‘scrapbook’ my illness.  Below, you will see what you would do on an online Discovery Session with me.  The sessions only allow five minutes to put together the collage – that is important.  We want to tap into our intuition and choose images before we have a chance to block them out or think too much about them by bringing in our feelings, perceptions, concerns and so forth.  Every session begins with a prompt we come up with when talking before hand and, for mine today, I chose “How do I see my illness?”

Here’s what I came up with:

My notes that I took during the session:

“This image set offers me more image-reference rather than explicit photos, which made this session more reflective. Lots of blues, surprisingly more serene while doing it and images chosen imply it.

• Action refers to work, which is constant with C.I.
• Middle image is ripe tomatoes, I choose to represent setting seed.
• Smallest image of hospital bed acts as a constant reminder that floats above everything.
• Image showing invisible illness among visible social ties.
• Are those ruins or indications that over time I’ve been worn, but still here to be marveled at in terms of achievements?
• The colorful salad represents both nutrition, that I am what I eat, but also the ingredients I need to constantly choose to make my life the healthiest it can be.
• The images of the swirling circles, of course, represents my immune system that is involved with the work I must do. It interacts with the level of visibility I choose to have and the seeds I plant every day for myself and those around me.
• Notice the unintentional direction that seems to swirl towards the hospital bed, but is distracted from reaching it due to the other images it overlaps. Tells me I still can make a difference in my overall health direction.”

 (C.I.= chronic illness)

Again, these sessions aren’t therapy, even though they have therapeutic properties.  I am a wellness facilitator, which simply means I organize the setting and coordinate the process, but the participant – you – choose the image meanings, define the connections, and take from it what you want to use.  My role is in simply asking the questions without any expectations or judgment.  I supply the momentum to assist you in exploring what you want to learn from you yourself. Who better to answer your own questions?

I am offering these one to one-half hour online sessions for only $15 throughout December and January,  because I want anyone to have a chance to take part.  It is a wonderful, self-care opportunity to play and learn, without concerns of lacking ‘creativity’.  We didn’t worry about that when we made our first collage in grade school, so why stress out about it now that we are all grown up?  That need to explore is still within us, but we’ve had many years to build up our barriers and walls of fear.  If you have ever spent time with grandchildren or your own children and loved how carefree they are when creating, that is what these sessions can offer you, too.

This is the season for joy~ and online Discovery Sessions are just one more opportunity to create some for yourself (or a friend) who could use a little lightness in their day.

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~

Hello, dear MLWT readers. I am pleased to be invited to do some guest blogging for you now and then, and it feels like it might be nice to put first things first and introduce myself properly.

To start off, here are some basics:

My name is Sarah Nuxoll. I’m 35 years old, and I live in Portland, OR with my husband and two young children. I do not have lupus, but I do have Cystic Fibrosis .  Yes, I realize these are vastly different diseases, but boy can I empathize with the continual demands and detours of living with chronic illness. 

What brings me here to MLWT, in a nutshell?

Well, I’m here because after 35 years I’m finally practicing letting myself enjoy life as it comes – illness and kids and all – and I’d really like to help others feel this as a possibility in their own lives.

What will I be writing about?

A number of things, I think. When we live with chronic illness, I feel it touches so many aspects of our lives, day in and day out. It’s this big picture I’d like us to be able to come to terms with, by digging a little deeper into habits of emotions and thinking that actually limit our options for enjoying our lives, usually without our even being consciously aware of them.

More specifically, I feel drawn to reach out to new parents, who may be struggling with how to find time for nurturing themselves physically and creatively in between all it takes to raise children. I’d like to contemplate the ways chronic illness touches into and is influenced by our spirituality. I am also interested in exploring a deeper mindful connection with our bodies themselves; though it is easy to feel “betrayed” by our body when we live with chronic conditions, I’d like to consider turning this attitude on its head and see how we might more consciously participate in our inner workings.

How do all these subjects come together?

In essence, what I’m really hoping to do is to help us recognize when we begin to feel frustrated with our lives – whether due to issues with our health or just life in general – and then come back to square one and ask ourselves a few simple questions: Am I taking care of myself? Am I asking for the help I need? Am I getting time to express who I am, apart from any role as patient, parent, or partner? And if not, why not? What beliefs am I carrying around that fuel this frustration, and that really aren’t serving me anymore? What do I want to do with my life, anyway? 

I believe that if we can begin to see more clearly these subconscious patterns, we can turn them around to become the fire we need to consciously tell the story we want with our lives. And that, dear readers, means giving ourselves permission to creatively explore how we can organize our lifestyle to receive what we need and actually enjoy ourselves here.

How did I get interested in all this to begin with?

Up until a few years ago, I spent a lot of time feeling angry, depressed and overwhelmed with my life.  My interest in beginning to sort out these subconscious habits was ignited when I met my meditation teacher, Brenda Morgan .  I still work intensively with the body-mind and spiritual insights she shares for healing the way I approach life. This has brought such a positive restructuring to the way I engage my creativity and explore all aspects of my life, that I am eager to share some of these tools with you as well, flavored by my unique experience as a woman with cystic fibrosis, as a mother, and as somebody who is truly interested in helping each of us accept and embrace ourselves as we are, while having the courage to move toward healing. 

Interested in chatting further? 

If you should find yourself reading one of my blog entries and something clicks that you’d like to explore further with me, I would invite you to surf over to my website, and connect with me there. I am happy to chat via email, by phone, or in person. I also welcome the chance to speak to groups of people interested in opting out of the cycle of stress and frustration in favor of exploring ways our lives can work and be enjoyable. 

Thanks for listening, dear readers. I look forward to this conversation together.

Sarah

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 

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,  @MYlupus (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  @despitelupus

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

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 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.

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!

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

“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 “