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.

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.

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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

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.

This Fall, the focus here at My Life Works Today! begins to broaden its scope and explore the common themes involved in living with chronic illness.

Initially, I started this network in 2008 to bring some awareness and resources regarding lupus at a time when very little was offered here in Oregon.  In 1998, I searched for local resources as I entered into a life with lupus and, in 2003, it was still difficult to find much of anything that felt relevant to my experience.  By 2008, however, I tired of the empty void and threw into the internet cosmos an idea, making use of the burgeoning social media to help me putOregonon the lupus map.  I had hopes to raise my voice and make the word “Lupus” more commonly heard so that when people Googled “oregon  lupus”, something – anything – would pop up.  It now does, along with the many other voices that have joined in, so my original MLWT project goal has been met.

Today, MLWT has evolved from a lupus patient-focused networking hub (pre-cursor to the online resources like Twitter, Facebook, Ning and other communities) towards a chronic illness health and wellness resource collective for professionals, programs, foundations, authors, advocates and service providers focusing on autoimmune and other syndromes or illnesses that are difficult to diagnose.  MLWT is for those living with health challenges that are often referred to as “invisible”, simply because the true pain and chaos we are experiencing with our health isn’t generally visible to others making it difficult for us to explain.

This next phase of the project will be to incorporate general wellness resources already available, both locally and nationally, in a more cohesive manner recognizing that there are more things about us in common than truly different when living with a chronic condition.  No matter what chronic disease diagnosis we have to accept, the common theme is that our health challenges are chronic and won’t go away.  There is often pain and repercussions from medications. There is need for daily exercise and movement, requirements for proper nutrition and access to mutually-respectful medical support.  These chronic conditions can be costly in many ways, but can be managed to some degree by taking care better care of ourselves.  My hope is to continue to highlight the tremendous talent, services, programs and resources we have here locally to consider and/or explore in designing your own personal wellness goals.

My Life Works Today! began as a statement reinforcing the idea that life with lupus forces us to manage our daily expectations in order to self-manage our health over the long run.  Lupus is what I know and I will continue to create this place of encouragement for those seeking a connection point to their own wellness possibilities.  The tagline, however, is changing in order to reflect the new emphasis:  Your Life.  Your Wellness.  Your Way.

I will write more about my new directions beginning September 18th, including online options for those living outside the Pacific Northwest.  In addition to changes in the MLWT program and on the website, the MLWT Mailing list will be activated to send out seasonal MLWT newsletter updates (four each year).  I will also be putting into motion the P.O.R.T program (People Offering Real Time) for those of you living here in Oregon and SW Washington.  As is with change, there are bound to be some bumps along the way.  I’ve been battling a number of them for the past month and hope I’ve cleared a smooth path to get us going.  If things don’t look right, aren’t received or don’t work, you know my email…just let me know.

I do appreciate your patience and support during this exciting time for all of us.

Maria

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.

Darese (on right) and I, PNW Chapter LFA Portland Lupus Walk 2008

Sometimes, many months or years pass before I get around to checking in on some of my friends.

One friend, in particular, would take what seemed to be forever to get back to my emails or phone calls, which would frustrate me since her lupus was of the more aggressive type.  When she did get back to me, she would tell me of stories regarding emergency hospitalizations and troubles during dialysis.  I would chastise her for not letting me know that things had been so difficult and she would assure me that when things were really bad, she would call.

Usually, the majority of the catching up between us would be more about the new love in her life, her new projects through her church and the friends she was making at various health-related appointments.  It was always good to hear this stuff, because I could always see her face lighting up and her gentle smile as she told it to me in person.  On the phone, her voice reflected that same gentleness and I hung onto every chuckle from her.  I wanted so much for her to be happy, as I watched the lupus ravage her for years.

My absence from here over the last few months was in direct result at the shock I experienced when her mother called me in early July to say that Darese had passed away in June.  My reaction was mixed at the news and the months that followed had me in a funk that varied between absolute sadness for her, anger towards her for not letting me know what was going on, guilt for being angry with her, regret for not being there for her and so on.  Then, the wake up call forcing me to remember that lupus isn’t something to take lightly, which shut me down altogether.

I could not bring myself to write about her passing until now.  I think I’ve found some balance and I know that she would be scolding me, if she were here, for being such a baby for this long.  There was so much about her that I hold dear to my heart and it is about time I share it.

I met her when I finally decided to check out a lupus support group, about a year after my diagnosis.  She sat there, the only African American gal and under the age of 45 years.  The facilitator was younger, but busy talking with everyone there.  So, I took the seat next to Darese, intent on keeping to myself as I forced my way through the meeting.  We used to laugh later  about how she had planned to do the same, but neither of us could help connecting to each other.  We were peas in a pod.

The stories she shared with me during our decade-long friendship were sincere and inspiring.  The jokes, complaints, her rantings and “some day” dreams made her so unbelievably human.  The miscommunications and misunderstandings between us made our friendship worth fighting for.  Even though there was often too much silence in the last two years between us, as life’s chaos took hold of our days, we always knew each other was out there.  At least I can say for certain that her being on this planet with me — somewhere — meant everything to me.  I want to believe that she perhaps protected me towards the end.  She probably knew I wouldn’t be able to watch her go.  She was right, as usual.

Sharing this with you brings back all the sadness I have suppressed since that phone call and I see that I still need time to accept that she’s gone.  There are people we come across in our paths here who connect with us to the core.  We may know it emotionally, physically, spiritually or mentally.  Sometimes, we can’t choose the people who connect with us that deeply and their presence may serve as more of a reminder of who we need to become, rather than a celebration of who we are already.

Darese and I didn’t choose each other, but I choose to keep her close now, even though she has passed on ahead of me.   We celebrated, inspired, challenged and were very grateful to be there for each other.  Her place in my heart now reminds me to not let time go by too long before checking in on the other special people in my life.

Silence isn’t always golden and the sound of it can be deafening for our hearts, if we’re not careful to keep them connected.