First, some background~

My mom is 72 years old and lives with me.  She has been battling physical challenges since before I was even a glimmer in her eye.  In fact, I suspect I am a DES baby due to the nine months of nausea I put her through while pregnant with me.  And, believe me, she works that one into the ground.

Currently, she struggles with constant pain (to name only one challenge), due to a combination, we suspect, from degenerative disc disease, fibromyalgia and nerve damage from an accident many years ago.  I think there are probably even more factors like medication side effects, nutrition (she loves her convenience foods) and lack of social support (I can’t be everything and animals don’t ‘talk’).  The point is that she knows what being on medication is about, simply because this behavior of pill popping is so deeply ingrained into her very being.

So, when she started complaining about acute stomach pain – she has chronic pain, but these new sharp pains were new for her – I began asking her questions.  Basically, our conversation today went something like this:

Mom:  Boy, my stomach is killing me.

Me:  Could it be your ulcer?

Mom:  No, this is different.  Every time I eat something, I get shooting pain.  I just don’t want to eat.  And ice cream doesn’t cool things down like it usually does. [Insert my head shake of frustration here – ulcers and dairy don’t mix for her and she knows that.]

Me:  Are you accidentally doubling up on your meds (which she does when she forgets to take one) or taking something new?

Mom: I don’t think I’m doing that. [insert another head shake by me]  I am on something new, though.

Me:  This has been going on for over a month, Mom.  Did you call your doctor like you said you would last week?

Mom:  Well, I will if it gets worse.  It has been better lately.  Just keeps coming back. [insert, ...well, you know]

Me:  Let me read the bottle, okay?

Mom hands me the bottle and I begin to read off out loud what is stated in the smallest font I’ve ever seen.  I read what it is, who the manufacturer is, the dosage and warnings.  All appears to be in order with the usual information, but I’m thinking we may want to check with our pharmacist about any prescription interactions.  Then, I get to “Take with food.”

Mom:  Oh, with food?

At the risk of sounding like a broken record, this topic is covered in the Living Well workshops offered all over Oregon and Washington.  Even though sometimes participants chuckle when I bring up how we can easily misunderstand how to take our medications, this scenario with my mom only proves how taking a minute to read one of a gazillion bottles over again just to be mindful of what we’re taking, why we’re taking it, and, most importantly, how we are to take it is crucially important.  When it comes to creative pill popping due to time constraints, lapse in memory or just not wanting to wait to eat, I’m also guilty as charged.

Mom has medications that require some with food and some without, leading her to simply want to organize her regimen that makes it more memory-friendly (not working). This re-organizing, though, causes her to easily confuse the appropriate requirements that allow each medication to do its job as designed.  We all do that, don’t we?

Mom’s appointment is this Monday and I gave her a good scolding to prep her for the one waiting for her during her appointment with her doctor.  Mine will probably be the more gentle chew out of the two, but she deserves what she will get and her situation will only support the belief among the medical community that patients aren’t taking their medications correctly. They’re right.

For the sake of all of us wanting to be taken seriously by our healthcare providers, we must be mindful every time we take our meds.  How irritating is it when we complain something doesn’t work like it is supposed to and some smart a** asks us that inevitable question “Is it plugged in?”

We all need to remember to ask ourselves that same question with the next pill we take~  no matter how experienced we our with our treatment plans, reminding ourselves to pay closer attention to our own self-care behaviors is really important.

Not to say that using materials to network wouldn’t be smart, as I aim to make a living, but it just isn’t who I am.  So, you probably won’t see anything about me at the next health fair or support group meeting.  This website is enough for me and referrals from people matter more than anything.

What I have been asked to do, however, is to write up a bio and put together a CV (Curriculum Vitae) for new collaborations with Naturopaths and health systems that I’m now working with directly.  It has been a struggle to comb through years of service work, counseling, grant writing, program development, crisis intervention/family mediation, youth case management, graduate studies, research, and so on.  I’ve also learned that it is very important to include volunteer work, which only made this whole exercise that much more daunting.

This additional recommendation of using volunteer work as “work experience” reminded me of a conversation I recently had with a workshop participant about how much work living with chronic illness can be for all of us.  Simply managing all that we have to manage to get through our days, weeks, months and years is, in itself, a full-time job.

My exercise in getting this bio/CV put together has been to go back to my professional beginning (starting in high school, apparently) and identifying all of my skill building opportunities that have contributed to who I’ve become over the years. Basically, write my professional story.

I would say that we could all stand to take some time and write our story, as if learning to manage the challenges of our health has become what we “do.”  Why not?  We keep going to workshops, reading books, searching the internet, taking classes, going to our medical providers….all under the assumption of “If I just knew…” 

Through my work as a facilitator, and based on my past service work experience, you will discover what I have over the past couple of days in doing this exercise…

we already know a hell-of-a-lot…and it’s damn time to give ourselves some credit for it. 

Take time to stop expecting someone out there to have more knowledge about how to care for ourselves better than we already do.  Give ourselves more credit in the level of expertise based on our own personal experience, trial-and-error and real-time living.

Write your own C.I. (e.g. chronic illness) ‘resume’ – you will be shocked at how powerful your own professional skills have truly become over time.

And smile – you’re amazing.

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.

One of the most important points I make when co-leading the Living Well With Chronic Conditions workshops is the difference between acute and chronic conditions. I may have covered this before, but bear with me as it is well worth repeating.

 Acute conditions usually have one cause, begin rapidly with a short duration and are diagnosed rather accurately. They often have cures that physicians can easily guide us in taking clear, decisive measures to getting ‘well’.  Chronic conditions are, of course, the opposite.  They gradually occur with many symptoms that come and go with no specific origin at first.  There is often more than one treatment or medication to chase symptom management, tests are usually inconclusive and cures are rare.  The roles of the health professionals are, at best, only able to educate and advise us, frequently requiring us to build a partnership with them in learning how to ‘manage’ rather than ‘return to’ optimum health.

For several years now, I have been relatively lucky and blessed to have my lupus of the more manageable type, although kidney involvement can get serious even without any apparent symptoms.  I have learned to know how my body works, what it responds to best and the unique needs it seems to require of me.  There are times when I do refuse to listen and it is very good at letting me know when I screw up.  My symptoms have been quiet and my blood work has shown no outward activity.  That’s the thing about lupus – we ask ourselves in the beginning “Is this lupus?” with every odd symptom or virus that comes our way. After we get better at learning the difference and things do improve, we can’t help but want to simply believe it is merely the flu.  We want to put lupus behind us and take every opportunity to do so.  I never had the typical lupus symptoms and apparently I never will.  So being on the lookout for ‘lupus’ was easy for me to let go of and minimizing the little stuff came quite naturally.  The only thing that kept me focused on chronic illness at all was my health experiences from the past and my current profession.

Despite knowing better, however, my lupus is here to remind me that it is still very much a part of who I am. 

How is it possible that I, someone who stresses to others frequently that “chronic means chronic”, can forget that my own lupus never actually went away?  How often do I hear participants confess with sadness that, when they have good days they feel like their old selves again,… only to cry when their symptoms return and they are faced to re-live their losses all over?  That constant battle between what their life was and what their life is now.  Although I often express gratitude to my body when it cooperates and allows me to find some joy in my days, I admit that I took for granted the ease of movement, the flexibility in dealing with daily hassles and the boundaries that I pushed to the point of tempting a full-blown flare.

After years of nothing to really complain about, my lupus has returned with the memories of the pain, stiffness, swelling and concern right along side it.  I will have to re-learn the strategies to overcome the constant pain signals because my tendons have become inflamed.  I will have to adjust to the swelling in my legs and the need to prop them up from time to time.  The blown blood vessels and the more frequent lab work to monitor my kidneys.  The realization that my morning stretches will be met with much more resistance both physically and emotionally, now that my aches will beg me to simply stay in bed.  My work will be more difficult and I will have to take more breaks, impeding my flow in writing and facilitating.  I will have to just slow things down after years of being able to operate at a much faster pace.  I feel myself digging in my heels and desperately trying to figure out what I “did” to bring it all back to this extent.

The fact is – and I KNOW this – is that lupus is a chronic condition with a constant cycle.  Out of sight does not mean out of mind.  Living as well as we can is possible and is important to aim for, but we are faced with the reality that we can never truly forget things aren’t right…and that hurts.  Regret that I took advantage of my blessing rises up within me and I talk it down as quickly as I can, knowing that my response to the symptoms right now will set the tone for how these days ahead will play out.

Taking on the role of victim or the spoiled child fighting back to the word ”no” will only create a ‘ me vs. it ’ perspective and will ‘loop’ right back physically to my immune system detecting more threat.

I find myself back to reliving my past and, quite honestly, am in a better position now after the years of working with, listening to and learning from so many others who have struggled, too.  I think this will be good, as painful facing it all again will be for me in many ways.  I have never believed that I was cured, but I did believe the worst was well behind me.  The timing for it all to return at the beginning of the year couldn’t be more appropriate.  Nothing truly changes for me as I take one day at a time to meet an objective that I want to reach.  I will create my days working to reach an immediate reward that will help me face my next day with a little more hope.  I didn’t deserve this or really even earn this recurrence, because my health is a cycle of symptoms, seen or unseen, that I need to remember and respect.  What it does give me is the opportunity to get through it all successfully, again, and reminds myself of that strength residing within me that I had forgotten over these past years. It’s this simple reminder, not my lupus, that has been my biggest gift this season.

I am wishing you all many gifts, lots of hope and peaceful insights touched with joy throughout the New Year~

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.

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!

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It’s October here in New York and I can already feel the chill in my bones. Not a good feeling for anyone, but especially for fibromyalgia sufferers. The thing is – I know it’s going to be a long, cold, winter, but what am I supposed to do, curl up in the fetal position until May?

I can’t do that and neither should you. In the winter months it’s especially important for you to move.  You must keep that blood flowing and keep those muscles and joints loose. Now, exercise won’t be as easy or as comfortable as in the summer months, but it’s just as important to your fibromyalgia treatment. Your two biggest obstacles will be motivation and the cold weather.

So here are 3 quick tips to put you on the fast track to exercise and health this winter, you can do it!

Who has the motivation to exercise in the cold?  No one. The secret is to look past the winter. Don’t concentrate on the winter months.  Instead begin to prepare your body for the spring/summer that is coming. Where do you want to travel this coming summer? What activity have you wanted to do for a while?

Go to your calendar, mark the date, and exercise towards that goal.  As you exercise, picture that goal clearly in your head, focus on it, and believe it. Your mind will always look to accomplish what you truly believe in.

Your second road block will be the cold temperature. In the summer months I like to exercise in the early mornings. Winter – not so much. The winter mornings are always nice and chilly, not a good time to exercise. So instead I will get in my workouts after I have been up awhile and loosened up a bit. What usually helps? About a cup or two of Green tea. Not only will it warm you up but the little caffeine it has will give you the extra boost you need to get moving.

No sunlight? Don’t forget your vitamin D. Vitamin D is bountiful in the summer months as we soak it up from the sun. In the winter it’s a little harder to feel the sun. A good vitamin D supplement should help keep your immune system nice and strong. Exercise will not only keep your body loose this winter, it will also strengthen your immune system.  Fibromyalgia plus a cold is never a good thing.

Bonus Tip: It’s called the “Law of Expectation”.  It means focusing on expecting good things in your life. Forget about expecting more pain and fatigue. Make an effort to expect good health and a bright future.

As always, remain positive this winter and know that summer is just around the corner, so start planning…

Eric Suarez, CPT.

www.fibromyalgia-fitness.com

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Eric Suarez is a Certified Fitness Trainer and the owner of Valiant Personal Training in New York. He is the founder www.Fibromyalgia-Fitness.com and the author of new book -Fibromyalgia Fitness, 12 Weeks To A Healthier You!  He is offering a discount on his book to MLWT members and I will be posting more information about those details here very soon.

Since 2008, Eric has been helping fibromyalgia sufferers gain control over their symptoms by using simple functional exercises and healthy eating.  You can contact Eric directly at eric@fibromyalgia-fitness.com  and follow him on Twitter at @Fibro_Fitness.  Stop by, consider signing up for his e-newsletter and be sure to say hello.

From time to time, I remind myself that I’ve put off “me time” too long when I have yawned for the third time within a single minute or discover myself slouching to the point of nearly laying face down on my keyboard.  When sitting up straight is too difficult, that signals that my priorities are WAY out of whack and need attention. I need a solo.

One of the very simple things to do is a brief “needs” intervention, which, for me, includes simply focusing on my breathing.  Basically, it isn’t just the disease that puts us in a world of hurt, but rather the interaction between symptoms and habits that orchestrate in a cycle between our mind and body, fueling the velocity and direction in which our symptoms affect our lives.  In the Living Well workshop, breathing is one of the tools recommended to include in our self-management “tool box” that we can use to help interrupt the chronic disease symptoms cycle.

These days, breathing is often equated with meditation or yoga and can raise the hair on the back of some of our necks because we aren’t “that flexible” or “just can’t sit that long in one position.” For me, my brain gets in the way.  I know that it is natural for my mind to wander when given some quiet time and, with practice, it will wander less the better my skills become.  The fact is, though, I’m just too plain lazy to practice. Yet, I still want the benefits of what I know good breathing techniques offer, but I want them in a way that I can sneak into my days rather than having to schedule around my bad habits.

Although there is a vast amount of research supporting the benefits of meditative and deep breathing on health, interventions don’t have to require a lot of sitting time for short-term benefits.  Granted, the longer you invest into breathing, the more you will benefit from the breathing exercises.  However, more research is coming out saying that taking part in a health intervention (e.g. nutrition, exercise/movement, breathing/relaxation) briefly throughout the day, every day, shows improved results more than doing nothing at all.  This is particularly important for those of us who are stuck at a desk, riddled with pain and have restrictions in physical mobility, have limited resources to afford gym membership or lack motivation or social support to get us more active. Breathing is free, something we already do and is a key tool for on-the-spot symptom cycle interference.

Somewhere between tense muscles and pain is a perfect place to put in a few deep, diaphragmatic breaths (breathing in through your nose, expanding your abdomen rather than your chest and breathing out through pursed lips) to remind your nervous system it is time to relax.  The trick isn’t just the breathing, though.  It is in picking up on the cues your body is sending you and trying to regain some balance.  Pain creeping up on you? Jaw clenched? Yawning a lot?  Feeling antsy or jittery?  Losing steam?

 “Where are your shoulders right now?”

 Anything that helps us link our brain with our body helps set things straight in many arenas and taking a moment to breathe well buys us some time, slows down the cycle of disease, treats ourselves to some self-care and allows our many internal systems to orchestrate more efficiently.

That is beautiful music for those of us with systems playing like death metal – screaming, head banging and speaker feedback.  Right now, take back some control with two slow, deep breaths (only one breath if you have COPD or other breathing challenges, until you see how you do).

• Sit up straight and place your feet level on the ground, one hand in your lap
• Close your eyes
• Place your other hand on your chest
•  Take in air through your nose, slowly, expanding your belly and keeping your chest still (your hand placed there will help keep you honest)
• Breathe out, slowly, through pursed lips until all the air is expelled (if you get dizzy, you’re doing it too quickly)

You may have noticed that releasing the air through pursed lips takes longer than usual and there seems to be more of it.  There is~ rather than only filling the top of your lungs, you’re filling the entire lung to include the deeper, less used portions.  This helps keep things healthy and working. In addition, it also quickly gets some of that needed oxygen into the blood stream to reach muscles, your brain and send those messages to all of your systems that you’re back into the priority spotlight for the moment.  Normally, our autonomic nervous system takes care of the oxygen monitoring for us.  When you choose to be proactive with your breathing if things don’t feel right, you are doing the conducting.

Try it for two weeks, three times throughout the day and assess your stress level on a scale between 1 (low) to 5 (high) every evening.  By the end of the week, you want to be seeing numbers closer to 1 overall.  Breathing won’t keep stressful events from happening, but, hopefully, you’ll notice more emotional/physical resilience (the ability to adapt and keep going) from the breathing exercises helping you get through the more difficult notes.

It only takes a quick beat to change the melody of a song, but adding them more often throughout can make a real difference in the entire performance.  And you’re the key to making it happen, so prioritize yourself daily, if only for a beat or two. 

There will be a video of the presentation available to watch, if you belong to the PDXFibro/CFS Ning community.  Cheryl also provides printable versions of her materials on her website, including the brochure she handed out at the meeting, and welcomes any questions here on the blog or to her directly.

There are two big concerns that sometimes become walls blocking us from considering applying for disability .  One worry is “How much will it cost me?” and the other is “Who should I get to represent me?“  Sometimes, these two questions can play off of each other, with the question of cost determining our decision about representation.  Local attorney, Cheryl Coon, offers us a quick summary targeting both of these questions.

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How do Social Security Representatives (Attorneys and non-Attorneys) get Paid?

When clients come to see me about their case, the first question is usually “Do I have a good case?”  The second question is “What will you charge to help me?”

The easiest question is, of course, the second one.  (Evaluating the strength of a case is a complex process that includes a claimant’s age, education, past work, and general credibility (which includes alcohol and drug use, criminal record).  Then there are the factors beyond the claimant himself – which judge is assigned to hear the case.)  Today’s column explores the myths about how representatives (reps), both attorney and non-attorney get paid.

Myth #1:  Only some attorneys and non-attorney reps offer to represent you for free until or unless you win.

Under the Social Security law and regulations, no-one can charge you for helping you with your case without first getting their fee approved by the Social Security Administration.

Myth #2:  Even if I lose, my attorney/non-attorney rep can charge me a lot of money.

What you pay depends on the agreement you made with your attorney/non-attorney rep.  Although it is widely believed that you can only be charged if you lose, in fact, neither the Social Security law nor the regulations say this.  As a practical matter, I do not know any attorneys who charge if they are unsuccessful in winning your case.  You can and will be asked to pay out-of-pocket expenses such as postage or the costs of a medical consultation, regardless of the outcome.

Myth #3:  Attorneys and non-Attorney reps get paid 25% of back benefits.

Attorneys and non-Attorney reps do get paid out of back benefits, but it’s the lesser of 25% or $6000.  The cap of $6000 always applies.  In a typical case, the fee is usually closer to $3000 or less.  In an SSI case, where the monthly amount is currently $674, a year of back benefits will result in a fee of $2000.

Myth #4:  Non-attorney reps charge less than Attorneys.

The law allows both attorneys and non-attorneys to charge the same amount.

Myth #5:  Anyone can be a non-attorney representative.

In order to insure the best possible representation, the Social Security Administration recently changed its rules for direct payment of non-attorney reps (a person can represent another without getting direct payment but it’s a powerful inducement to comply with the rules).

The law requires that non-attorney reps must:

• possess a bachelor’s degree from an accredited institution or possess equivalent qualifications;
• pass a written examination administered by the Social Security Administration, which tests knowledge of the relevant provisions of the Social Security Act and the most recent developments in agency and court decisions;
• obtain professional liability insurance sufficient to protect claimants in case of malpractice;
• pass a criminal background check; and
• complete continuing education courses.   (Effective August 29, 2011)

Myth #6:  You don’t need to understand how to do a federal court appeal in order to represent a social security disability claimant.

The Social Security disability process has multiple levels of administrative appeals, culminating in a hearing.  If you don’t win at hearing, all is not lost.  There is one more level of appeal, known as the Appeals Council.  After that, a claimant still has the option of going to federal district court to appeal.

Social security disability appeals to federal district court are common.  Many claimants succeed here who did not get favorable results at hearing.  Only attorneys are allowed to handle federal district court appeals.

A successful federal district court appeal depends upon the record that was created during the other levels of appeal, including: evidence submitted, examination of the claimant, cross-examination of the medical and vocational experts, and briefs.  So, while you don’t have to understand how to do a federal court appeal, it helps to have a representative who does, because he or she will approach the hearing record with that in mind right from the beginning.  Moreover, many attorneys will not bring district court appeals for claimants whom they did not represent during the hearings process, so it can be hard to find an attorney at that stage of the process.

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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.  Cheryl’s blog offers case studies called “Can This Case Be Won” and I encourage you to read more about how this challenging process evolves.

Another resource Cheryl invites you to check into is the Ticket To Work Program , which works with the disability program incorporating employment opportunities without adversely affecting your disability rights.

One of the many things I’ve learned about the fibro community is that pain is a strong motivator.  With lupus, pain is sometimes present or may be more present in our days than we would like it to be, but not one of the key symptoms associated with our illness.  When someone lives with pain, it affects and changes us to seek out answers, information, resources, or alternatives at a level that we may not be naturally inclined to act.  As someone living with lupus and looking just fine, it is easy for me to decide not to talk about my health.  I can blend in without too much effort, keeping the internal chaos as invisible to myself as it is to the person standing in front of me.  However, I started out with a great deal of pain, before I knew that lupus was ravaging my kidneys, and I know that I showed my pain in the way I attempted to walk, reach, sit, smile…live.

I have been granted an opportunity to meet with many local people and have become part of the strong Fibro community here in the Portland Metro area.  If you are interested in meeting some of them, many are members of their Ning community that I have listed down in the right margin here under “MLWT Networks.”  I receive emails from locals living with fibro (as well as worldwide) on a regular basis, more so than from people living with lupus.  They speak about what they are looking for, what they are doing and how they are thriving in spite of their constant pain.  Many are open about asking for help, even if it is a difficult thing to accept at times.  They welcome visitors to their groups in order to ease the discomfort a new environment can create for many of us.  The emotional wall seems much more flexible for these individuals and, I suspect, their life with pain moves them to keep connected to something or someone with hopes to mute their body’s hurtful signals to any degree possible.

Although my mother lives with, what she has been told by her doctor, “secondary fibromyalgia”, I still don’t ‘get it’ and I know I truly won’t ever fully understand what she goes through.  I do, however, want to learn more (and hear more) about as many fibromyalgia experiences as possible, because I know I will be able to better appreciate the information I receive coming from the ‘trenches’ more than I will from a research article or medical/pharmaceutical presentation.  I want to be here for my mom in a way that will actually acknowledge her unique experience and offer her the support that she needs, when she needs it.

To honor those many people living with fibro that I have met through MLWT, I will be hosting two book discussions in a row that focus on living with Fibromyalgia.  The first book is FibroWHYalgia, by Sue Ingebretson, and our discussion on Shelfari.com will begin October 1st.  To kick things off, Sue has offered a free, signed copy for the lucky winner.  Even if you don’t get around to picking up a copy of the book right now, you can still join in on the discussion and we encourage you to do so.  It’s a chance to have a conversation that is guided by the topics covered in the book and an opportunity to perhaps learn about additional resources that may be of help in your own fibro experience.

Here’s how you can get the FREE copy of Sue’s book for the discussion:

• The contest will run from today September 15th until 11:59 PM Pacific time, Friday, September 23rd.
• The winner will be selected in a random drawing on September 24th. I want to keep this give-a-way free of strings requiring you to do anything to win.  However, since this is for our MLWT Book Discussion group, you will need to register a free account with Shelfari.com.  It is a great place to meet others reading the books you are and MLWT isn’t the only group.  Authors are also beginning to sponsor their own discussions, so it is worth the effort and a great way to keep up during the winter reading months.
• I would also like to add your email addresses to my new seasonal enewsletters (The MLWT Muse) that highlight wellness updates and resources to know more about, both local and outside ofOregon.
• I will contact the winner via email on September 24th, and they will have 48 hours to reply in order to claim their prize. (So be sure your email address is correct!) After 48 hours I will move on to another winner.

To enter this give-a-way:

1. Sign up for the MLWT Mailing list (directly to your right on the MLWT website) and leave a comment below letting me know you’re signed up.  Then,
2. Sign up for the MLWT Book Discussion Group on Shelfari.com .
3. If you are already registered for either or both of these, just leave a note in the comments here to enter your name!

Once the winner is chosen and has claimed their prize, Sue herself will contact them by email with her congratulations and get their mailing address for the prize copy.  The winner should receive it in time before the MLWT discussion really picks up.

Best wishes to you all for the win and I’m looking forward to the upcoming discussion!

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To learn more about Sue and her book, you can find her on Twitter (@SueInge), her Facebook fanpage , and her book’s website www.FibroWHYalgia.com .  She is also an MLWT Guest writer and you can enter her name in the search field on my website to bring up posts that she has contributed so far.