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.

First, this is a great flu-season topic to cover, as we are surrounded by so many dealing with colds and various other bugs that can complicate our lupus or autoimmune disease self-management.

Secondly, consider the possibilities in what lupus researchers may be able to learn more about the miscommunications going on within our immune systems leading to our destructive inflammation.  What would our T-cells say into a transistor and how might that help us target a specific conversation that, when modified, could change the entire dialogue for us?

It is still in it’s infancy, but I am going to be on the edge of my seat watching this potential unfold.

Visit the article and great (i.e. easily understood) video  that goes along with it.

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.

Usually, I only take two medications to manage my lupus and it’s affects on my kidneys.  Those two medications are an immunosuppressant CellCept ® and the ACE inhibitor/diuretic brand name Lisinopril .  I have been through many more pills and higher dosages over the years, but have been consistent in this current regimen since 2007.  In all honesty, there have been some hitches in dosages from time to time.  However, I’m fortunate to have a physician who trusts me to be responsible and upfront with him if I really change things up, other than just a missed dosage or two.

I mention my meds because I know that taking pills bothers many of us and that, even though these are the only pills I have to take on a daily basis, I still fight taking them.  You may notice that I don’t list supplements and that is because, well, I hate taking pills.  I am changing back to my original medication program to include calcium/vitamin D, though.  I stopped taking them for about four months to rule out some of the digestive issues I was having and now believe it was the brand, not the supplements themselves, causing the trouble. I’ve just been lax in buying more and starting up again.  I DO NOT recommend that you do not taking them, especially if you’re doctor has told you to take them.  Please do as I say and not as I do.  Listen to your doctor.

As I get back into paying more attention to my lupus and the methods I use to re-connect the dots (so to speak), I see that I practice a great deal of mind-body therapies instinctively.  That means, I don’t resist standardized medicine completely or consciously.  I merely automatically seek ways to tie together what I think about my health with what my body tells me that I can understand.  With kidney disease, we just can’t know all that is going on, because there are very few outward symptoms to notice until things are in really bad shape.  With my lupus, though, there are other symptoms that are familiar to me and easy to track.  It is still advisable to run them by your doctor, but you may be able to take some steps to address them until your next appointment.

These familiar and less intrusive symptoms are what I focus on when I practice my self-care to help heal the over-board immune response that is my lupus. These symptoms include headaches, fatigue, “brain fog”, heat and swelling in my tendons (ankles and wrists, mostly), eye sensitivity, mouth sores, sun sensitivity, stiffness in my joints, indigestion and so forth.  Although sometimes these can be extreme and are then shared immediately with my physician, I have found that I can minimize their impact if I get to dealing with them as soon as I notice them coming on.  There are some other non-traditional lupus symptoms, but still seem to be involved in my immune ‘surveillance system’ reacting to threat.  Most common include hot flashes/sweats, sleeplessness, confusion, dehydration and appetite changes that I suspect have more to do with the fact that I’m nearing fifty and/or not managing my stress levels effectively.

One of the mind-body ‘therapies’ I use quite often is Autogenicsˡ.  In a nutshell, this therapeutic tool is simply using self-guided verbal instructions addressed to specific parts of my body.

Although I sometimes feel like my dog listening to me tell him what to do all the time, there is something about actually hearing me tell myself “Stand up” when I’ve been at the computer too long.  I’m not kidding, saying it out loud makes all the difference!  Let me clarify that I’m not bullying myself into standing, but simply (and with stern encouragement) motivating myself to practicing some self-care.  The reason it is more effective if said out loud, which has been known to create some confusion in social settings, is because we need to get out of our heads sometimes to take ourselves more seriously.  Only thinking to myself that I ‘should’ stand can be, and is often, ignored by my stubborn disposition. Besides, “should” is not a word I am particularly fond of nor respond to favorably.

I started with simple ones, such as “sit”, “eat”, “stretch”, “breathe.”  I’ve moved up to more specific, but still short-and-sweet, ones like “go to bed”, “drink some water”, “park farther away” and “grab some fruit, not that cookie.”

This really simple tool, and many mind-body therapies are, get me to listen to my gut instinct through practice.  Making that connection between serious self-care and recognizing the partnership between what I’m thinking and what I’m doing, has truly helped me address my constant dehydration and develop more consistency in remembering to take my pills.  Introducing the supplements again will be my new ‘trick’ to learn and, yes, there will be treats involved.

I’m going through my list of favorite mind-body tools and will post them all next week.  Some you may already know about a few of them or maybe you haven’t tried them yet. I encourage you to think about giving at least one a try and to come back here to share your experiences.  If you have resources (online or classes) that you have found to be helpful in learning more about any of the techniques I cover, you are more than welcome to send them in and I will include them in the next  MLWT  Musings e-newsletter.

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Source:

1. Maizes, V. &  Low Dog, T. (Eds.). (2010). Integrative Women’s  Health.  New York, NY: Oxford University Press.

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. 

Building on the research I conducted on lupus peer-led support groups here in Oregon, I continued to interview, research, review content and take part in as many conversations I could with regards to what ‘support’ means to those of us living with invisible chronic conditions.  My job here from 2008 up to now has been to gather, organize, clarify and respond to what living with lupus and related chronic conditions involves for as many people as I could learn from locally and beyond.

It has been difficult for people to get an idea of what MLWT is about, mainly because it was still forming and relied heavily on community feedback.  The blog wasn’t a general platform designed to talk about my personal challenges, although there have been a few posts that did open up that door.  It was more of an opportunity offered to those here in Oregon and SW Washingtonto chime in regarding resources, support needs, experiences, challenges, and successes achieved in maintaining their lives in the face of illness.  Although few commented publicly on the blog, the emails and conversations we shared were valuable in learning more about many of you out there and what you’re looking for regarding finding support in living your kind of ‘well.’

However, as we all know, we can research, read and review until we’re blue in the face (or red in the eyes), but still not get anywhere until we put all of that stuff we learn into action.  I’ve written about this topic before here on the blog and this new phase for MLWT is to follow through with this important learning concept.  It is time to apply what I do know and step into the ring of supportive service.  I will maintain a mission statement, because I believe them to be very helpful in staying on track with where I’m going and give some assurance to those I work with about where my commitment lies.

My revised Mission Statement is:

“My mission is to inspire individuals living with ‘invisible’ chronic illnesses by facilitating support opportunities that reflect their wellness potential here in Oregon, SW Washington and beyond,  focusing less on their disease and more on  their own intuition towards designing the lives they seek.”

The way I translate the MLWT mission is through two distinct service roles.  These roles are as a Wellness Facilitator and as a Wellness Doula.

As a Wellness Facilitator, I focus primarily in creating momentum through communication.  I assist in the process to strengthen wellness plans that will reinforce personal chronic disease self-management.  My role is to contribute structure in a process that will  encourage participants to explore their possibilities, discover  their own untapped potential and to assist in creating objectives for themselves.  I work in health education and training, wellness and health-related support group settings, as well as directly offer individual and group work.  I also collaborate with agencies, health-focused organizations or foundations, and local wellness service professionals.

As a Wellness Doula, my role is to act as a your partner in a more hands-on way to bridge between your health and wellness education source (physician or medical provider, counselor, therapist, life or health coach, etc.) and you.  Although I still facilitate your process in designing your self-care needs, there are times when a little extra support is needed.  As it is with a traditional doula who assists a woman in preparing, experiencing and adjusting to the new life she brings into the world,  I support you during the pre-diagnosis, diagnosis and the on-going adjustments that often come from living with a chronic condition.  I provide non-medical,  as-needed individualized support helping you define and succeed in your wellness goals by making them relevant to your life as a whole.  The focus is on you rather than simply on your health challenges.

I’ll cover these in more depth in the next few days and it will be placed on my website as well, as we go through this transition.  For now, you are more than welcome to ask me questions in the comments section about any of these changes I’ve mentioned or you can always email them to me at any time.

Well wishes to you all~ take good care of yourselves,

Maria