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.

In case you don’t already know, I simply cannot get myself to sit still and meditate.  The whole idea of being present in the moment is a tough pill to swallow.  With the multiple, crushing blows I’ve had happen recently— health and otherwise—I figured it was time to more seriously explore more options.

Let’s face it, autoimmune disease and stress go hand-in-hand, and with life being hectic and chaotic enough, I know I don’t need to add more to the mix with my outrageous need to “do it all and perfectly” belief system.  Although there are specific mindfulness trainings and therapeutic practitioners available to guide us in exploring this practice more fully, I offer my laymen’s version of what little I’ve been doing on my own.

Mindfulness practices are exercises to focus on the present moment in a non-judgmental way.  Stemming from Buddhist spiritual beliefs, practicing mindfulness in the Western world falls more into the positive psychology realm as a form of emotional self-care.  By paying attention to my breathing and setting aside any thoughts that are not associated with my focus of the moment as they come into my mind, I practice paying attention.  By doing this, I not only can slow down my oxygen needs, my heart rate and calm down my system’s fight-or-flight reactions, but also give my entire body a loving time-out…all without having to sit in a lotus position.  There are three activities where I use this increased attention practice.  I’ll only talk about one for now:  focusing on sleep.

I have incorporated being more mindful into my night-time prep to help improve my sleep.  By focusing on what I do, why I do it and paying attention to the details like the sound of water, the sensations like washing my face or brushing my teeth, it is amazingly calming.  When the thoughts of what I didn’t get to on my to-do list show up, I simply give myself permission to deal with it “later” and get back to paying attention to preparing for bed.  I cannot tell you how this simple ritual has improved my quality of sleep.  My brain can go a mile a minute if I let it and it has often caused me to wake up or not sleep at all, creating more pain and negative moods the following morning.  During the three weeks I tried it out, I tracked 50% more hours of sound sleep, better mood mornings and more energy.  No extra time, no special equipment, done right in my own home while doing what I normally do anyway.  Just a shift in how I go about it made a world of difference.

In the Living Well with Chronic Conditions workshops (Oregon’s name for the Stanford University’s Chronic Disease Self-Management Program or CDSMP) available throughout Oregon, you can pick up some easy-to-do practices including breathing techniques, progressive relaxation, and guided imagery which all fall under a similar realm of wellness care.  They take some time to practice, but are so unbelievably easy and shown through research to be effective in improving health outcomes by connecting how our minds and bodies interact together.  With autoimmune conditions, that “auto” part is of particular importance to us and more studies are beginning to show that even though our immune system, as well as other automatic systems that keep our bodies functioning, acts without us having to think about it, we can influence them in ways to take better care of ourselves.

Practicing some mindfulness on positive activities that we do every day like preparing for bed (or simply scheduling a few minutes of taking some deep, focused cleansing breaths) can be the most loving thing you’ve done for yourself in quite awhile.  Try to bring more in-the-moment attention into your days, particularly as the holidays approach, and see if creating a mindful ritual can treat you to some healthy kindness.  You deserve it!

Even if you don’t live on the coast, what a great reason to go and escape this heat!

September 10-15, 2011

 Arthritis Road Show 

Serving the communities along the Oregon Coast

The Arthritis Foundation is bringing free resources to the communities of theOregonCoast!  Hear from rheumatology specialists, orthopedic surgeons, and get a free osteoporosis screening.

Program Dates and Locations

Saturday, 9/10           Astoria – Holiday Inn Express

Sunday, 9/11             Tillamook – Tillamook Bay Community College

Monday, 9/12             Newport – Oregon Coast Aquarium

Tuesday, 9/13            Yachats – Adobe Resort

Wednesday, 9/14       North Bend – North Bend Community Center

Thursday, 9/15           Gold Beach – Curry Public Library

Program Schedule:

6:00 pm  -  Registration & Resources

6:30 pm  -  Presentations and Q&A sessions

7:30 pm  -  Program Concludes

To RSVP, Please Contact:

Cynthia Bishop, OregonPrograms Coordinator

Phone:  (503) 245-5695  Toll Free:  1 (888) 845-5695

Email:  CBishop@arthritis.org

Sponsored by:

Pfizer

Amgen

rebound Orthopedics & Neurosurgery

Janssen

Abbott

Arthritis Foundation

The urgent note I want to mention is that, although the group has moved to the Multnomah Arts Center , which I’ve had posted on the site.  This meeting had to be changed back to the old stomping grounds at the Beaverton Library on 12375 Southwest 5th Street . Due to road construction and the Farmer’s Market, the time has also been changed to begin at 1:30 with Andrea coming on at 2pm.

I hope to see you there~ trust me when I say this is a fun way to spend the afternoon.

Have you ever wondered how a lawyer analyzes a social security disability case and figures out whether a case can be won ?  How do the facts in a particular case add up — or not — to a winning case? 

I decided to create a column dedicated to sharing an inside look at how a lawyer takes the facts of an individual case and works with them to shape a winning argument for disability benefits.  In my column, I draw on my own cases with names and other facts changed to protect privacy to help explain how it works.  I call my column “Can This Case be Won?” because I believe that stories, especially those based on a true case, are the best way to help non-lawyers understand the legal process.  Let me know what you think!  And check it out at my social security disability blog .

Warm regards,

Cheryl

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Cheryl Coon exclusively focuses her law practice on social security disability at all stages of the process, representing clients from Eugene, Oregon to Vancouver, Washington. She can be reached at ccoon@stc-law.com. Her law firm, Swanson Thomas and Coon, can be found at www.stc-law.com.

Another option is to participate in a Portland-area focus group either this week or early next week~ they will only be in town for these interviews for a few more days.  Remember that the focus is on using naturopathic treatments that you may have included within your regular conventional treatment, such as acupuncture and Chinese medicine. I am coordinating the local focus group for them, so please call me at 503-616-4856 or email me at maria@mylifeworkstoday.com to register asap.

This is a wonderful opportunity to help bring awareness to our medical community that thinking outside the box offers more options for us in taking care of ourselves.

******Update:  We have scheduled a date and time for this focus group~ Thursday, July 7th at Beaverton Library.  The time frame is from 1-3pm, but there is opportunity to still be interviewed until July 9th.  Refreshments and a Starbucks gifit card will be offered for focus group participants.  We have a couple of spots left~it’s simply you telling the researchers about your use of naturopathic treatments and what part they’ve played in your wellness.

(a) elderly

(b) undeserving

(c) disabled for life; and/or

(d) taking advantage of the system

Our social security disability clients are young and old, wealthy and homeless. And their “impairments” – the word that Social Security uses – include: Fibromyalgia, Parkinson’s, anxiety and depression, ischemic heart disease, degenerative disc disease, Lupus, cancer, asthma, chronic pulmonary obstructive disease, schizophrenia, bipolar disorder, traumatic brain injury, HIV/AIDS and interstitial cystitis, to name just a few.

I’ve never met a client who would rather receive disability benefits than feel healthy and be able to work ! Many of my clients could and probably will do some kind of part-time work eventually. Very few of my clients could be described as elderly.

But unfortunately, the labels I described above discourage many people from even applying for disability benefits and that’s a shame. It’s a shame because disability benefits can serve as a bridge to carry a person from one phase of his or her life to the next phase. If you’ve been diagnosed with a chronic illness and it’s reached a stage where you cannot work at your occupation right now, at least not on a full-time basis, disability benefits can help you through to another phase you may well reach – a time when you discover other interests and skills that fit better with the reality of your illness and allow you to return to work.

If you’ve been injured and it’s lasted more than a year and shows no sign of getting better soon, disability benefits can help you through difficult times until you’re able to resume your past or new work. And yes, in some cases, when you are not likely to ever return to work, disability benefits are your right.

Consider this – President Harry Truman, no bleeding-heart liberal, said of Social Security disability:

“It has long been recognized as an inescapable obligation of a democratic society to provide for every individual some measure of basic protection from hardship and want caused by factors beyond his control.”

If you are eligible for Title II, the Social Security Disability Insurance program, it’s because you’ve worked consistently and, by the way, you’ve paid into the system every time you’ve received a paycheck. If the benefits you’re eligible for are under Title XVI, Supplemental Security Income, there’s no shame in that. You’re in good company with people who, for various reasons, don’t have enough of a work history for the Title II program. Maybe they are mothers who have raised kids rather than been in the workforce. Maybe they are too young to have amassed the necessary work history. Maybe they are veterans who suffered an injury in service and haven’t worked since then.

Probably you’ve heard that it’s a long and frustrating process. There’s some truth to that but not enough that you should fail to exercise your right to access these funds. The first step is to contact the Social Security Administration and apply. The Social Security Administration (SSA) offers three ways for you to apply for Social Security disability benefits: by telephone (1-800-772-1213), in person at a local Social Security office, or online at www.socialsecurity.gov/applyfordisability/.

If you get turned down the first time (and nearly two-thirds of applicants do), don’t give up. File an appeal within the time period allowed. Get a lawyer to help you. Keep trying until you get to the hearing stage because this is the stage when many folks finally get a positive decision. And keep seeing your doctor – the evidence of your regular visits and the relationship you are building with your doctor will prove invaluable when your hearing date finally arrives.

Remember that the Social Security disability program was set up for the situation you are facing. President Clinton said it best:

“Social Security. . . reflects some of our deepest values–the duties we owe to our parents, the duties we owe to each other when we’re differently situated in life, the duties we owe to our children and our grandchildren. Indeed, it reflects our determination to move forward across generations and across the income divides in our country, as one America.”– William J. Clinton, February 9, 1998

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Cheryl Coon exclusively focuses her law practice on social security disability at all stages of the process, representing clients from Eugene, Oregon to Vancouver, Washington. She can be reached at ccoon@stc-law.com. Her law firm, Swanson Thomas and Coon, can be found at www.stc-law.com.

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As this network’s coordinator, I work at making connections with local professionals who focus on topics and issues I hear about most frequently from the MLWT community.  Recently, I received a comment recommending that I enlist the expertise of an attorney to contribute posts here regarding disability benefits.  I have met with Cheryl personally, as I do with many of the local professionals I have as guests, and must say that between her professional experience in this arena and her personal experience getting through the health care maze and building a supportive community for parents before social media, I believe she will be a great resource here.  As with any of my guests, please recognize that everyone must be their own best advocate and my guests are merely the people I wish to introduce to you~ not necessarily to endorse.

“Guest speaker at the next Scleroderma Support Group Meeting in Portland is Naturopathic Physician Serron Wilkie N.D. at 10am Saturday, November 13 at Legacy Good Samaritan Hospital.  “How Integrative Care Can Improve Your Health: Natural Treatment for Patients with Scleroderma and Autoimmune Disease“ will be presented by Dr. Wilkie followed by Q&A.

According to the Kwan-Yin Healing Arts Center website, Dr. Wilkie “helps her patients restore a sense of ease, harmony and joy in their lives by creating optimal health and sustainable wellness. Patients who have not been helped by other conventional or alternative treatments often seek out Serron for relief and deep healing.

“She earned her naturopathic medical degree from the National College of Natural Medicine (NCNM), the oldest school of naturopathic medicine in North America.  There she was honored with the Nature Cure Award for embodying the principles of naturopathic medicine.”  Find out more about Dr. Serron Wilkie N.D. at kwanyinhealingarts.com .

Donna says that she is warmly encouraging people to come to the Nov. 13 meeting for an end-of-the-year gathering.  She hasn’t seen some people for quite a while and would dearly like to touch base as we close out 2010.” 

All Scleroderma Support Group meetings are free and open to the public.  This Oregon Chapter event is scheduled for 10 am at Legacy Good Samaritan Hospital (Wistar Morris Room on 1st floor), 1015 NW 22nd Avenue, Portland, OR.  For more information about this or any chapter support group topic, please visit their website.

With that in mind, MLWT Guest blogger Becca at Thrive Acupuncture  gives us a quick overview of how acupuncture can be used to ease headache pain and may even help in preventing future headaches down the road.  As always, be sure to keep your medical team updated on an changes you make in your health management.

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It doesn’t matter what type of headache you experience.  Be it your run of the mill headache, tension headaches, migraines or cluster headaches.  They can be related to stress or hormones.  No matter the cause or type of headache, Chinese medicine has a way of getting them out of your life!

Below are some acupressure points that you can massage in order to ease your headache.  For best results, find a licensed acupuncturist who you can work with to determine your Chinese medical diagnosis and get to the bottom of your pain.

Large Intestine 4 (LI4) is a point that strongly moves Qi in the body.  This point can also be used to specifically treat disorders of the head – perfect for headaches!  Do not massage this point if you are pregnant.

Du 20 is a great point for treating many disorders of the head, based on its location.  This point will be especially effective if your headache is near the acupuncture point!

Heart 7 (Ht7), as well as all of the rest of the points along the crease-lines of your wrist, are great for treating headaches that are located in the base of your neck.  There are several acupuncture micro-systems that portray the hand as your head, with the wrist crease representing the back of the neck where it meets your head.

If your headaches are located at your temples, massage them!  Tai Yang is an acupuncture point located in your temples!

And, like massaging your temples, feel free to massage the areas where you experience pain.  We have many many acupuncture points on our heads, (which would make for a very long blog post!) so chances are you’ll be massaging one or more!

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Becca Seitz, MAcOM, LAc  is a licensed Acupuncturist and Chinese Herbalist living here in Portland, Oregon.  Learn more about her and the health options she offers for you and/or your pets at Thrive Acupuncture .

Ah, Fall.  My favorite time of year. 

One would think that, living in Oregon,  having a respite from gray, rainy weather would be something I would want to hold onto as long as possible.  The thing is, the sun is beginning to cause me more trouble with my lupus the older I get and it just doesn’t feel like the same ol’ summer fun I remember.  It is hotter, more direct and unforgiving.  That could be my age talking, but all I have to do is look at my wilted garden and see that it seems to agree with me –heat isn’t our cup of tea. 

Fall sun, on the other hand, is glorious.  It isn’t as high up in the sky and there seems to be a little more moisture in the air to muffle the rays before they burn into me.  There is a more frequent, cool, intermittent breeze and the clouds…where I do begin with those?  Huge cumulus ships passing through the beautiful blue lake above, giving me pause to return to my youth and lie there, watching them.  Yeah, I make the time to do that.  

With the changing of seasons comes obvious time for reflection.  Grade school children get to report on their summer adventures to their classmates.  The harvesting of the garden (finally) rewards the amount of work it took to get it started and keep it going.  The air is easier to breathe and sitting on the deck is enjoyable again.  This transition from exploring outside my nest to returning to it for the cooler months is signaled by the autumn flags waving at me from on our maple trees.  I respond to their signal every year with little hesitation, no matter how dreary will be the days ahead.  Summer was fun, but I’m always ready to move on. 

Nesting is a primal urge, whether it is via Goodwill or The Pottery Barn.  If you think that only women have this urge, you’re mistaken.  The bachelor pad or man cave is just as much of a nest and offers the same need for comfort.  We all have those needs and we all tend to them in our own way.

As the summer closes for you, what are your reflections?  Does the change in the season prompt any particular feelings, plans or shifts in the way your carry out your days?  Do you use nature as a prompt to get going on your nesting or are you perhaps influenced more by changes such as the comfort foods of winter? How do changes in symptoms from secondary diseases including Raynaud’s and Fibromyalgia influence your nesting?  How do you feel about living within closed quarters, having limited sunlight and the cooler, damper temperatures?  Is your nest ready for the months to come? 

This season is when people begin to re-group.  Back to 40-hour work weeks with no vacation time left (I think there are still people out there experiencing that!)  Now that our kids are back in school, or we are returning ourselves, we may have more time to reconnect with our own friends.  Local support groups are starting up again. The holidays and all the chaos involved, are just around the corner.  Social events or volunteer work beckon.  When we think going inside means isolation, the last months of the year demand our attention instead.

Surrounding ourselves with others is just as much a nesting pattern as decorating our homes.  We need to lovingly tend our sense of ‘home’ physically and emotionally, by choosing what and who helps us celebrate all that we ourselves represent.  Who will you surround yourselves with?  Does a support group fit your sense of comfort or, when it comes to looking for a support team, are you someone who stays closer to ‘home’?  Are you online through Twitter, Facebook and other networks?  Are you choosing solitude by bucking up and flying solo?  A little bit of all these strategies may be just what we all need from time to time. 

Fall may sound like a lot of touchy-feely work, and to some degree it is, but it is a necessary way we take care of ourselves.  Too many of us just don’t take the time and, I believe, we are joyous for that first day of school not because our kids are learning. Schedules return and getting in some ‘me’ time is possible, so let’s start getting the prep work on how that nest needs to be done now.   Join me in taking in this time for reflection and exploring the things (and people) we will need in our nests for the long winter ahead. 

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 I encourage you to attend two upcoming events next weekend that I’ll be hanging out at:

Oregon Chapter of the Scleroderma Foundation Support Group Meeting

Saturday, September 11^th at 10am

Legacy Good Samaritan Hospital (Wistar Morris Room on 1st floor)

1015 NW 22nd Avenue, Portland

Their website for more support group information

This group is open to all patients living with any autoimmune illness and their family/friends. This is an amazing group offering great speakers, lots of information and wonderful, adventurous people to get to know.

Oregon’s Lupus Now  Lupus Foundation of America event benefiting our PNW Chapter

Mad Hatter Walk, Run and Roll (The Run is new!)Sunday, September 12^th    Check-in starts at 8:30 am

Cook Park, 17005 SW 92^nd  Tigard

Their website for more information and a link to directions

 This is their annual fundraising event to help support the Pacific Northwest Chapter covering  three states – Oregon, Washington and Idaho.  A new location that is very family-friendly and pretty to boot, they have also added a run to the fun.  More information about what this tiny, but mighty chapter offers can be found here and stop by to meet some wonderful locals living with lupus, too.

 Hope to meet up with some of you at either of these events~