There is a month full of campaigns for lupus awareness~ I’ll try to make note of as many as I can.

What I would really like to do is encourage you to wear purple today and show not only your support in bringing awareness of this disease to others, but to give yourself acknowledgement that you work through your challenges with lupus every day…and that means something.

Some days are better than others and it would be wonderful to not have to face them like we do.  However, by taking a minute to realize just how much you handle and succeed in, despite these challenges,  is well worth a day of color.

Today, that color is purple~ find even the smallest bit of it and wear it proudly.

You’ve earned it!

What does this day mean for you?

I am always amazed at how difficult it is for me to return to writing here after a long absence.  Why is it so hard to get motivated to be willing to spill my thoughts into the cosmos?  Is it fear of scrutiny or rejection? Is it the sense that no one cares anyway?  Is it an exercise in futility, because no matter what I think of things…nothing changes?

Since my last post, a whole lot of crap has happened and, quite honestly, I just didn’t want to relive or process any of it. Yet, moving on wasn’t possible either…I felt stuck in the muck and, as it is when you’re standing in quicksand, moving just gets you in deeper.  Deeper is not where I wanted to go.

This heron is a daily visitor in my backyard, mainly due to the 10-inch goldfish that also reside there.  We have a mutual distrust and lack of respect for each other.  We are a threat to each other, aren’t fully understood by others and have long, weird necks.  S/he  looks prehistoric and I, at times, feel like it.

Life gets ugly and sometimes we have to take a minute (or in some cases, are forced to) and look more closely.  How easy it is for me to whine about the chronic stressors and stupid events that make my life difficult, inconvenient and frustrating.  Traffic, relationships, financial challenges, lupus and other health symptoms, weather, work.  The feelings of hidden conspiracies and karmic punishment that don’t simply smack me in the head, but actually compound with every complaint I utter out loud.  My constant manipulative expectations where I believe that if I just meditate for five minutes, then Providence will take pity on me and leave me alone for awhile.

Bargaining fruitlessly until I burst into tears.

I took this picture of my visitor today and, while loading it on my computer, I didn’t see the same bird.  I found myself in awe.  This bird, with its screeching cackle, scraggly feathers, ill-intent and lack of respect for my personal boundaries, is actually very impressive.  S/he (I haven’t bothered to explore which, because it doesn’t matter to me) lives as it is and for all the grief it must endure for its appearance and behaviors, still finds a reason to endure.  It isn’t outwardly friendly or trusting and a pretty private being.  It makes its way despite it all.  It squawks…then slowly moves to another location where it stands with amazing patience to continue its life as it is.  Nothing more.

As a human being, I struggle not with life, but what I choose it to mean to me.  There is my dilemma.  Stressors are only stressful when I deem them to be.  Frustration occurs not from the event, but in how I chose to deal with it.  What I see as ugliness in life is actually a reminder that I’m not living…I’m reacting to life and, clearly, I am not happy about that.

I need to take the cues from this fowl visitor and learn to squawk, move on and practice patience.  Ugly is as ugly does.

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.

For years, I have explored the new, and sometimes renewed, methods by which we try to make some sense or gain some control over our lives.  What I’ve learned over time and have expressed here constantly, is that each experience with lupus or other chronic conditions are uniquely our own.  Although there is a benefit to building a network or personal support community to help us weather the daily challenges, we are always on our own in trying to make our lives work for us personally.

When I have the opportunity to facilitate health-focused brainstorming and problem solving sessions for individuals and/or groups, the words “isolation”, “fear”, “uncertainty”, “frustration” and “pain” are the most frequent words I write on the board.  When I facilitate Wellness Discovery Sessions, those same words come up time and time again through images. No matter what the health challenge (and not necessarily limited to the Portland,OR area), there appears to be dark clouds hanging over each of us every day…and not just threatening rain.

Having worked with organizations and non-profits over many years, the mission statement is very important for those working within the organization itself and for those of us in the community who are considering supporting their efforts with our limited time, energy and money.  I always encourage careful consideration when donating anything to a collective group claiming to offer “support” for health or “wellness” needs.  The best way to determine their integrity is to carefully study what they say, do and who they team up with, as it all relates to their professed mission statement.  I have seen my share of “non-profits” come and go, that have focused less on service and more on marketing or “piggy-backing” on other people’s work.  They eventually fizzle due to revenue or lack of community response and leave those of us still needing health support high and dry.

So, how do these organizations or non-profits know what to offer the community they serve?  Social media is a great way to learn through lurking and paying attention to themes.  And, as we all know about social media, there are a lot of people out there giving opinions, medical advice, selling products, venting frustration, judging each other, or connecting with like-minded individuals all over the world.

Organizations and health-focused non-profits are only going to work financially if they ‘market’ themselves in a way that either seems to work for other organizations( similar events and topics) or by using the ‘lingo’ and themes as their ‘key words’ to get our attention. These keywords and themes are then used in their marketing materials to draw us in – as well as our wallet.

Now, I want to return to those keywords I pick up at most of my facilitations with individuals living with chronic health challenges such as lupus.

Isolation

Fear

Uncertainty

Frustration

Pain 

If organizations and non-profits are marketing wisely, they will use both these and the antonyms (opposite of these words) to get our attention.  But, are these relevant to us regarding what we truly need in support or are they simply expressions of the feelings that represent our unmet needs?  Do we want people to support us in feeling better or do we want people to offer us viable, relevant options to care for ourselves?

Initially, I thought about using the ‘first line of the story’ activity to create as a sort of collective affirmation on we want to make for 2012.  A type of working mission statement, if you will, that is broad enough to cover everyone’s experience in some way, but is still a statement that can help lead our support need requests toward building useful resources.  We hear calls to support research in finding a cure.  We hear about advocacy opportunities in supporting legislation.  We are always hearing from people asking for money to support their efforts. Those bases are covered and many are important for us to take part in for ANY health treatment progress to be made.  But, for you personally – what is your call for?

Maybe moving away from a collective activity and starting with individually exploring key words that catch our eye throughout the day is the first step.  What words support our sense of self-determination, rather than our need? Are those feelings and needs burdening us because we choose that or are we responding emotionally to ‘outside’ forces?  Or, just as valuable and necessary, are these needs and feelings truly relevant to us, waiting to be addressed? 

What would you want to see in a brochure?  What would you be interested in reading through the many social media platforms – Facebook, Twitter, Tumbler, Ning communities, and so forth? Do these keywords describe your life?  Are these keywords what you are looking for from an organization or non-profit?  Are you willing to support them in perpetuating these keywords or would you prefer to have them help you redefine them?

Just as a note, and an important one:  I hear a lot of positive things come out of facilitation, too.  I hear amazing strength, courage, self-determination, hope, joy, community, potential,…and so on.

That is the main reason I do facilitation~ what I learn from listening to the stories of others inspire me.  What comes from the process or dialogues during facilitation astounds me and motivates me to create as many opportunities to bring people together to brainstorm, problem solve and build something as possible.  Yet, strengths don’t imply ‘need’ and, although there are plenty of non-profits out there that offer services focusing on needs, usually the marketing focus is more on these ‘need-focused’  keywords that keep their mission statement (and their organization) operating.

I invite you to take a minute or two and join me in thinking about keywords that you would put into a personal mission statement.  Brochures and fancy websites aside, building on your own personal ‘marketing’ will make finding those non-profits and organizations that truly support you in your wellness much easier~ while offering you an individually stronger (and longer-lasting) impact on your own life.

I picked up crocheting again this winter as a means of “stress-relief meets holiday gift-giving season.”  This particular piece was a gift to my daughter, who happens to love owls right now.  I can’t take credit for the concept – as my friend Leslie, who authors the Getting Closer to Myself  blog, sent me a similar one in my holiday surprise package last December.  Her gift box, unfortunately, is still in the works…which brings me back to the last two weeks.

Here is my Wednesday with fewer words, both because I’m too overwhelmed for a full post and I’m trying my best to stick to the wordless theme.  This pic represents lots of caffeine, layers of ‘sweaters’, energy and mood swings, too much computer time and stacks of paper in the background…still waiting to be dealt with.

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.