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.

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.

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!

Yet, what about the young adults out there who can benefit from learning about health management early on in their diseases and symptoms?  They don’t want to join up in arthritis exercise classes with their grandma or attend a support group with women and men as old as their own parents.

This is true for middle-aged patients, too.  They may be new to diagnoses, early on in their disease progression or things may have evolved into new symptoms where they still battle with fear, uncertainty and confusion about their future. Yet, they don’t want to face things full-on by hanging out with geriatric patients well beyond parenting or full-time employment.

I’ve been researching online health-focused social networks in trying to gain some understanding of how unique the needs are of the participants and whether those needs are being met effectively.  Many times, I will find older patients becoming almost like ‘mother’ figures (of which I have been called myself) and their roles focus more on guidance rather than actual peer support.  That is where finding networks that can match up participants or are designed specifically to draw in certain age groups can help make health support more relevant.

We already have medical providers who are older, parents who are older and meet up with workshop or class participants who are generally older.  It is important to find friends who fit in more closely with who we are as an individual who happens to live with illness.  We hear it often, but it’s true:  we are more than our disease.  That is even more important to recognize in our youth as we face years ahead of us. 

I would like to introduce you to healKick~ and Rachel is here to tell you more about it.  I think this resource offers us an option that may fit our needs for peers to walk along side us rather than lead us on a path already traveled.

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My name is Rachael and I am so excited to tell you about a great new resource for young people with Lupus and for chronically ill young people everywhere. It’s called healKick.

HealKick is a social networking site for young adults in their 20’s and 30’s with neuro-immune illnesses like Lupus, Fibromyalgia, Chronic Fatigue Syndrome, Chronic Lyme Disease, Multiple Sclerosis, Myalgic Encephalomyelitis, Lupus, Rheumatoid arthritis, Sarcoidosis, Multiple Chemical Sensitivity, and Mold-related Illness.

As a chronically ill young person myself I know how challenging and isolating it can be. Dealing with the sickness is bad enough but when the friendships die and the loneliness hits, a bad situation seems even worse. The good news is that I have finally found a place where I feel accepted and understood again. I have a place where I can talk about my newest bizarre symptom, or the funny thing my dog just did. It’s a place where I can just be me. And that place is healKick.

The site was created to bring chronically ill teens and young adults together in a way that a traditional support group cannot. In a traditional support group, one condition is represented and members only have limited time and ability to connect and form connections.  At healKick there are multiple similar conditions represented but all the members are united by age. And there are many exciting opportunities to connect with others. It is a full social network with all the features you would expect, plus so many more.

There are message board-style discussion forums where you can discuss condition specific issues or your favorite TV show. You can chat with any of the online members either with traditional text-chat or our new voice/video chat room. You can choose the language of the site and connect with other users around the globe. There is a points system so you can earn prizes just by being active on the site. Search the site or look at the member map to find other members in your area. Come for a special event like a movie night and then stay for the new friends that you make.

This is a great opportunity to find commonality with and learn from others with slightly different conditions. It’s also a chance to connect with people with the same illness and encourage each other along the journey. The best thing about healKick is that no matter who you come across on the site, you will always have something in common with them because everyone on the site is in the same stage of life. This creates a community of people that is easy to fit into. I speak for everyone on the site when I say that we can’t wait to meet you!

See you soon,

Rachael

I am pleased to introduce author and pain archeologist, Sue Ingebretson, as our guest for today.  You may already know her from her website Rebuilding Wellness and/or from her book, FibroWHYalgia . You can also find her on Twitter and Facebook.  She lives with Fibromyalgia and works diligently in creating self-care resources to address the many challenges (and oppportunities) living with fibro can present.

With today being a big day in building awareness for Fibromyalgia, I asked her for her thoughts on a pet peeve of mine, where we in the health and wellness arenas can sometimes fall into focusing so much on managing illness that we can actually derail building wellness.  Please welcome Sue and learn a little more about what she has to say about being your own best coach in pursuing healthful possibilities.

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How Do YOU Manage Your Chronic Condition?

As a member of the FibroFix Team, I helped to create a free eBook that can be downloaded here. In this book, The Top 5 Health Mistakes YOU May Be Making Right Now! I listed one of the mistakes as this:

“Managing your illness rather than your wellness”

Do you see this as a problem for you?

In a nutshell, I pointed out that managers – or coaches — have a great effect on their teams based on their words. Most coaches uses inspirational language – phrases such as: See the finish line in your mind as you move forward. 

That makes sense, doesn’t it? Encouragements from others can really help us stay on track. It sharpens our focus and bolsters our motivation to reach our goals.  But what if the language from our coaches is negative? What if a coach said this to a member of his or her team: Make sure you don’t trip and fall like you did the last time.

How do you think a phrase like that would damage a person’s motivation, or worse, their self-worth?

The real problem is that we are often our own worst “coaches or managers” when it comes to life planning and setting positive goals for ourselves. A lifetime of experiences has taught us to think more negatively than positively. Many call this, “just being realistic.”

I don’t agree. Is it “realistic” to set intentions that may not ever come true? I know a lot of chronically ill people in my local area support group who think this way. They don’t commit to events or meetings because they might have a flare that day. They retrofit their homes, cars, workplaces with accommodations for future disability issues. They take pharmaceuticals that are intended for “the bad times” now so that if a crisis hits, they’re ready.

Is that realistic or pessimistic?

What if you turned that thinking around? Consider PLANNING for success and improved health. Coach yourself into positive thoughts such as:

My body is growing stronger every day

I see great improvement in my energy levels as I take care of myself 

Putting my self care needs FIRST, helps me to prioritize everything else

When it comes to self care and keeping a positive attitude, I’m often asked which comes first. The best thing is that it doesn’t matter! A positive attitude helps to motivate you to take care of yourself and taking care of yourself helps to foster a positive attitude. In all scenarios — YOU win! 

Try these basic and simple self care methods: 

• Move the body in a healthy way every day. Whether it’s walking, swimming, gardening, dancing, etc., moving your body each and every day is vital. Move within your own capabilities respecting any personal limited mobility issues. 

• Drink plenty of pure, clean water (that doesn’t mean water from the tap). 

• Include plenty of nutrient-dense, fresh veggies in your meals every day. 



• Breathe deeply – taking deep belly breaths – at any sign of negativity, anxiety, or worry.

• Create a bed-time routine of turning off TV’s, radios, etc. and write in a gratitude journal, read a good book, or take a warm bath. Whatever your routine is, make sure you stick to it and prepare yourself (mind and body) for a night of restful and restorative sleep. 



Applying just a few, simple self care activities into your daily life can have profound benefits! 

If you’re in the Midwest, The Fibromyalgia Coalition offers an amazing conference each year in May. Click on the 2011 Conference link for more details.  If you’d like an in-depth and personal educational series about healing from chronic illness (not just for those with fibro) that you can participate in from your own home, view the details of the FibroFix System here.

There’s always more to learn, so tune in to educational opportunities that meet your needs. Set your intentions for a positive and healthy future!

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Sue’s book,  FibroWHYalgia will be our first MLWT Book group pick beginning this Fall.  Here is a little more about it: 

When Susan Ingebretson found her health spiraling out of control, she wanted to know why. Her tenacious research into the causes of chronic illness led her through a maze of traditional and nontraditional healing methods. Ingebretson eventually connected the dots and found wellness. FibroWHYalgia is a half diary/half tutorial guide that exposes the facts, fibs, and fairytales of failing health and offers practical solutions. Included are detailed descriptions for making nutritional, fitness, and stress-relieving lifestyle changes.

Susan Ingebretson invites anyone with chronic illness to come down from the spectator seats and participate in restored health.

More about Sue~ 

Ingebretson was featured in the March 2011 issue of FIRST for Women magazine and made several guest appearances on the nationally syndicated health TV program, Know the Cause! Her writing has appeared in the National Fibromyalgia Association (NFA) print magazine, FibromyalgiaAWARE, and the Fibromyalgia Coalition International’s magazine, Fibromyalgia Alternative News. Ingebretson is a contributing author to, The Gratitude Book Project: Celebrating 365 Days of Gratitude and the eBook Fibromyalgia Insider Secrets: Top 12 Experts. She has also authored many books for Playbooks, Inc., a children’s publisher of instructional classroom books. Her book, Fabulous Food Detectives, teaches students to read food labels and discern the difference between whole and packaged foods. 

Ingebretson posts news and encouragements geared to promote positive lifestyle changes and healthy living.

Here we are again~ National Lupus Awareness Month.  International Lupus Awareness Day is May 10^th.  In Oregon, SB348 (Senate Bill 348 designates May of each year as Lupus Awareness Month and makes May10, 2011, Oregon Lupus Day.) reflects the same awareness calendar, spotlighting lupus on behalf of many of us living with lupus…or does it?  

I’ve been at this blogging and social media stuff for a few years now, so I am used to the awareness and advocacy commitments made in other states.  In my own state, I’ve grown used to the silence in those areas and have backed off on trying to understand what makes Oregon either so private or so uninterested.  Actually, so have many organizations, services and programs.  From what I’ve learned, we don’t tend to join organizations because we don’t want them asking us for money or to volunteer our limited energy for events.  Both are reasons I can relate to, which is why I’m not a non-profit. 

Yet, it never fails~ I will be in the midst of a conversation with a bank clerk, fellow coffee addict waiting to order, librarian, hair stylist, nurse, my daughter’s teacher, and others, when they will share how they know someone living with it.  The topic usually comes up when people ask me what I do for a living and I mention that I am a wellness facilitator.  Naturally, that will require a little more discussion and up comes the ‘L’ word –  “lupus”.  What I can always count on at that point is that they will utter the phrase: ”Oh, I know someone with that” followed closely by either: 

a)  “She’s really having a hard time.” ; or

b)  “She’s doing pretty well.” 

We all seem to being doing okay, but no one really knows.  The State doesn’t keep track of lupus and lumps it in with arthritis.  Rarely is it listed on a death certificate and medical providers don’t have the time to get involved with surveys or questionnaires to help us learn more about who we are.  My own rheumatologist doesn’t even believe I have lupus anymore, because I don’t show any signs of it in my labs or symptoms.  More specifically, he suggests that I never had it to begin with, because it doesn’t really happen here in Oregon due to our overall racial demographics. Yes, here in Oregon, despite it being predominantly Caucasian, there are people living with lupus, doc. Do your research and you’ll see there is a particular group of us with lupus who present differently, but we still have lupus.  My feathers were a little ruffled by his comment, mainly because I work hard at managing my lupus, and there he is minimizing it all.  I think the hardest part is really getting a clear picture about what  lupus is and finding some agreement among all of the communities who are working/living with it. 

In the last couple of years, I’ve tried to come up with projects that reflect the month-long lupus activities by approaching ‘awareness’ in a different fashion, to compliment everyone else’s work.  The use of social media and blogging has increased exponentially, offering more to read, learn and take part in than ever.  I know that readers will not have any trouble in finding stuff and probably more trouble in keeping up with all of it.  So, that leaves me with the question:  Where is my place, on the part of the silent Oregon lupus majority, in reflecting what we here think about, need to live well with or can benefit from regarding our lupus. 

I’m at a loss.  Not because I don’t think Oregonians have lupus, but because I don’t have enough to go on due to their lack of voice.  I am uncomfortable in representing Oregon, which MLWT has grown to be, not really knowing my own community. 

I have done a little research and am busy in the community these days with events, workshops and classes, collaborations, referrals and my direct services.  However, in order to keep things growing, I have had to expand from lupus out towards autoimmune and other lesser-known chronic illnesses.  Even though I hoped MLWT could be a hub for those with lupus, I have been excited to see that by including and incorporating what I do here has overwhelmed me with a sense of comfort to see how much we all actually share rather than differ in. 

This month, I’ll be writing more frequently and it will be covering many aspect of living with chronic illness, not just lupus.  I hear from more people with fibro than lupus, and I want to be sure to commemorate National Fibromyalgia Awareness Day in their honor.  I will be hosting guests, both locally and nationally, to write about what they know, what they do and what they recommend.  I’ll be highlighting some books and tools that are valuable in strengthening wellness self-management. I will introduce more specifically some of the work I do and how I do it.  I will be spotlighting some local health resources and reviewing some of my favorite places to visit on the web.  I will be busy with Living Well with Chronic Conditions classes and starting the pilot exercise class through the Arthritis Foundation.  I will be heading up to Seattle to help with the LFA’s Pacific NW Chapter support group facilitator training this month (it will be here in Portland next month on June 11^th).  These are just a few things I do regularly, but I will take this month to make things more visible.  Maybe if I open up about who I am, so will you. 

My calendar is beyond full and I know I am going to be working over-time, challenging myself in practicing what I preach: balance.  However, I think that if I get busy writing about our lives as a collective of experiences, rather than focusing on a particular disease, maybe I’ll have the opportunity to meet (and hear) from more Oregonians.  Perhaps you’re doing ‘just fine.’ Perhaps you’d prefer to handle things yourself.  Perhaps you aren’t ready to ‘accept’ the illness, concerned that seeing it makes it final.  Whatever the case, MLWT has become a beacon of sorts representing a voice, not a non-profit.  An idea, not a sound bite.  A collective, not an exclusionary group with their eyes set more on copyright than support.

I encourage you to get to know me and MLWT a little better this month.  Not as someone who knows more than you about living with health challenges, but as someone who wants to learn from you in order to do things better. 

I want to boost my awareness of those with whom I share this beautiful state.  Of course, I learn a great deal from others outside of Oregon and SW Washington, too, and I certainly want to keep hearing from you, too. 

So, gang, here we go! Today begins a month of spotlighting not our lives with an illness as much as succeeding with health challenges that makes our lives worth being aware of.

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What do I look for in a doctor? To answer the call in today’s theme,  I reflected back on some of those memorable experiences when talking to my doctor of the moment felt more like dealing with a character from Sesame Street® .  Or, in this situation, I think I’ll refer to it as, “ Sez Me ” Street.

You have Bert and Ernie     

These are the doctor-intern team where listening them talk back and forth to each other makes you wonder which one is going to get that Rubber Duckie put where the sun don’t shine — first.  They banter, speak each other’s language, drift onto tangents that completely go off the topic and treat me like one of the pigeons sitting on the window sill outside their window of knowledge. 

You have Benny the Rabbit 

“My name is Bennie, not Bunny!”  The cantankerous doctor who gets all bent out of shape if you mispronounce a medication or mention something you’ve come across online that made you wonder if it could be associated with symptoms you’d been having lately.  “It’s Ray-NODES, with a long “O” and not Ray-NODS.”  Sheesh, I was only trying to be helpful. 

Of course, there is Oscar, the Grouch 

Do I really need to clarify this one?  I mean, who HASN’T  met this dude? 

And then, there’s Elmo

…who spends too much time making light of my situation, symptoms, challenges, pain, fears and so on.  I don’t care how much you giggle or animate your voice, talk about some other patient who did nothing but complain, or offer up clever come backs that you’ve bestowed on some other poor soul.  Your levity without giving me something I can truly use won’t make me feel like dancing and I’m not going to tickle you with a smile to make you feel better.  Right at this moment, it’s all about me, Bub, and my name isn’t Mrs. Noodle!  I have a tendency to rely a bit too much on self-deprecating humor and I really don’t need you joining in, too. 

Who could forget Big Bird? 

As it is in the Wild Kingdom, most of the male birds get the beautiful plumage so they can dance around and get all the attention.  Top that off with a bird who acts flighty, forgetful, or surprised by any new symptoms and that can really get my feathers ruffled quickly. Or maybe it is a doctor who is way too busy fluffing or puffing up and not really listening to what I’m saying.  When I’ve finally hit my limit with these birds,  I’ve been known to give them  “The Bird” right back. 

Usually my favorite character on the show, but not in this scenario, is The Count 

The doctor who looks at the labs and counts “…1…2…3…ah,ah,ah” when reading off those stupid numbers that imply nothing is really wrong with me.  This doctor assures me that what I’m feeling can’t be Lupus, because my blood work doesn’t back it up.  When pushed, this doc will tell me to go in for more lab work to test things again, if that will make me “feel better.”  What I wouldn’t give to suck his blood and mock him while I’m doing it.

Okay, so enough with the venting.  As it is with the real Sesame Street®  show, there is always something to learn no matter what the topic, character or situation you find yourself dealing with.  What would be that kernel of truth that I can close this tirade here with in order to make everything sunny again? 

In this neighborhood, where ‘Sez Me’ Street is located, there are plenty of opportunities to cooperate, negotiate, communicate and educate with a lot of different characters.  We may not always get along.  We learn new languages and concepts, while offered many chances to practice it all every day.  We may not see eye-to-eye or feel like joining in on all the chaos.

However, the fundamental point in being a part of this neighborhood is that everyone, no matter who you are or what role you play, has a right to their feelings.

As a patient, I can get caught up in burying my feelings and needs in order to placate the doctor role or character.  I need to better embrace my inner child who sees myself as important and believes that I have the right to say what I have to say.  Remember that feeling when you were young and you discovered something SO wonderful or felt something SO awful that you couldn’t wait to share it with anyone within ear shot?  That impulse — that very need to communicate — deserves to be nurtured within all of us.  That is my personal kernel of truth that I want to contribute to this discussion today.  When looking for and choosing the doctor I work with, I have to feel invited to communicate.  Whether they openly ask me to or simply sit and listen to what I have to say, that door to share my experience HAS to be present.  Otherwise, they just don’t belong on my team.

One of the first characters on the show is probably how I like to see myself.  He is a voice of reason and wit trying to explain why something is important, even though those around him may not agree.  He’s the one with the hysterical arm movements, flapping them about shouting when he gets overly excited.  The one that many go to when things get confusing and, despite what challenges he may be facing, is still expected to be the strong one all the time.  The one with a crucial need for organization and coordination, so that he feels things run smoothly. The one who recognizes that he is different, speaks of it openly and sings to himself when he is down.  The one who may not always feel in the right place with those around him, but assures himself and those who sympathize, that it is okay to be different.  I, of course, am referring to Kermit, the Frog. 

It “…isn’t easy being green,”  dealing with some unsavory characters — or to live with a chronic illness.  Yet, it is an adventure worth taking, plenty of smiles and laughter to be shared and lots of friends to meet along the way.  If you get stuck with the way things are going with your doctor, tune in to watch Sesame Street again, like I do.  It’s a whole new experience when keeping this perspective, offers some great basic pointers in working with different characters (doctors)… and is still a lot of fun to watch, too.

As I am posting this next photo for the National Invisible Chronic Illness Awareness Week  , I noticed that there are a few interpretations that can be applied to this particular picture.  Isn’t that just like lupus?  It represents something different not only from one person to the next, but from one minute to the next!

What I was going for here was the example of how my lupus tends to insist on being included in my daily activities.  Let’s take that a little farther, though.

What else can I see going on here?

~I see someone in the middle of a conversation who is looking at me and NOT interacting with my lupus.  She either doesn’t see it, doesn’t care to see it, or doesn’t want to socially engage with something/someone unknown to her.

“Do I introduce her to my lupus or do I try to ignore the interruption?”

~I see my lupus approaching with ‘body’ language that would appear less threatening and genuinely interested in being included.  That sounds ridiculous, doesn’t it?  If you think about it, lupus is a disease where the immune system becomes confused and works too hard, forgetting how to do the job right.  When we perceive threat, what are we really telling our immune system?  Fight harder.  In order to help our systems and manage our lupus, we have to become effective mediators.

“Would I choose to assume I’m being threatened or is there a chance we can negotiate?”

How about the other body language in the photo?

~ I see myself standing with arms tucked close to my body and my listener is doing the same.  In fact, the only ‘person’ engaging in an open communication is my lupus!

“Does that look like a conversation someone entering into the picture would feel excited to join in on?”

~ I appear to be frustrated, irritated, in pain or dizzy/fatigued.  Even from behind, my listener seems to be waiting to hear more, perhaps to figure out what is going on with me.  A caption would be helpful…or even audio, so we could hear what’s going on.

“How do we know what I’m really feeling?  Do I even know myself?”  

You can see where I’m going with this.  We represent our lives with illness every minute of every day and we need to recognize that we are solely responsible in making sure the picture we’re putting out there is the one we want people to see.  Granted, there are a lot of compassionate and committed people in our lives who “get it”.  However, there are many more out there who don’t get it and won’t, even if they have lupus themselves.  Rather than focus on how frequently pictures of our illness are misinterpreted, let’s ourselves get behind the camera and create the photo shoot we want.  We can never completely rule out individual interpretations.  However, with a little planning, we can better minimize misunderstandings. 

This week, ask yourself about the snapshots of each day.  Who is the subject?  Where or how is lupus involved?  What are you doing, feeling, needing right now?  What is your body language saying and is it what you want it to be sharing or would you make some changes?  If you’re feeling particularly strong emotionally, ask others what they see and listen to them.   Are they on target or are there some revisions in your picture necessary?

What else do you see in my photo here today?  What are the little details that I haven’t mentioned that stand out to you and bring more to this ‘conversation’?  What may seem unimportant could very well introduce barriers or open doors, so it is a good idea to keep our health pictures as uncluttered as possible to ensure others will pick up the messages we are intending.   As Henry David Thoreau put it: 

“Our life is frittered away by detail… simplify, simplify.”

Model the day you can have, even if it isn’t exactly the one you would like to have.

And, most importantly, be sure to give yourself a smile.

This question brought up something I hadn’t thought about in years.  Although a different type of situation, its point still holds true—at least I think it does—to what Leslie at Getting Closer To Myself  is asking of us today in this edition of PFAM. 

I remember an experience in my early twenties when applying for admission into a local university’s social work program.  The Dean of the school asked me how someone as young as I was could possibly know how to counsel “ …a single African American mother of four in her mid-thirties and without a high school diploma?”  

I am still Caucasian, but older and wiser.  At the time, I was floored by the question he put forth, as a means to justify why my admittance to the program was revoked once they discovered I wasn’t of Hispanic descent.  My first and last name, although of French origin, led them to think I was going to fit into their Affirmative Action camp.  I opted not to give that information when applying, because I wanted into their program based on my merits.  That, and I obviously didn’t fit the program anyway.

I’m not sure what was bothering me more.  Him trying to dance around the  reverse discrimination scenario we were facing regarding my ethnicity or the fact that this supposed professional and expert in social work was asking me how I could help another woman coming from another set of experiences that were at least in the ball park of my own?  From that very platform, I shot my answer back to him:

“I would say much better than the Caucasian male sitting in front of me covering his tail-end and without a uterus.”

As you may have guessed, I didn’t get accepted into the program and have never regretted it.  His question has stayed with me all these years due to his lack of true understanding regarding the human experience.

How can someone outside of our own skin expect another to fully appreciate all that we go through?  Is it our hopes that, if we are suffering, others must suffer right along side us?  Do we go through our lives seeking out relationships only with people who are just like us?  If so, is that really our goal?  If we only interact with people within our condensed series of experiences, how are we to ever be inspired, challenged or given any opportunities to leave our own, indelible marks on others’ lives?

Some of us living with illness draw lines in the sand regarding who we bother talking to about things and those who we resent for not getting it.  We jump over these lines constantly, indicating that we, ourselves, don’t even know where we stand on the issue.  Are we ill or do we want to be considered “normal”?  Do we want people to help or be left alone and not treated like invalids? 

Our experiences with illness are on the same dimension as our experiences in life.  I personally don’t believe we are supposed to all go through the same things.  If you would leave “illness” out of it, how would you finish this sentence: “What I want you to know about my life so far is…”  My guess is that you would  lean more towards the positive,  if you consider yourself  the expert in your own life.

We are a collection of experiences that share a lot in common with each other, but it is those things that are uncommon between us that teach us the most about living.

For those who are not living with illness, some day you might find yourselves in our shoes.  At that time, let’s talk. 

For those of you who are not living with illness, but live with or know someone who does, just talk.

For those of you who live with illness, ask yourselves what really matters most to you, then talk. 

For those of you who live with illness and feel like no one understands what you’re going through, you’re right.  So talk.

I would never present myself as someone who knows exactly how to counsel anyone outside my own skin and I don’t think being there for someone means crawling inside of them and leading the way.   I think just walking beside them and knowing we’re both finding our own way along this lonely road is all any of us can really do.