Okay, I am amazed that we are already in mid-May.  Thanks to Leslie at  Getting Closer To Myself   for reminding me to get going on calls for submissions.  I will be hosting the next Patients For A Moment (or PFAM) blog carnival and, even though it snuck up on me, I am really eager to hear from all of you.  Just as a reminder, this is open to anyone living with chronic illness and not just lupus. 

I’ve been busy trying to get some of my goals and inspirations organized into actual plans.  Naturally, I’m overdoing it and I’ve been flaring again after years of what appeared to be remission…at least, as long as I kept up my meds.  I have grown used to not having lupus be a real factor in standing in my way of doing what I want, though, and the reappearance of familiar symptoms have certainly forced me to recognize the importance of pacing myself. 

I have over-committed, but I am unwilling to drop anything from my list because this taste of regaining some control in how my days will go is delicious.  I may have to negotiate a bit more, but I’m still going to aim for those goals.  

Since I dawdled at announcing this, I’m going to keep this PFAM’s theme short and sweet:

“What are your wishes and goals for the 2011 summer months that you are unwilling to let lupus (or other health challenges) stand in your way of reaching?”

Just as I am re-learning to do, I imagine there will be some negotiating you’ll have to do as well.  If you are making any modifications in your planning, be sure to talk a little about them, too.  Not only are we looking for inspiration in ideas to pursure, but it’s great to have some new tips on how to make our ideas come together with our health in mind.

To submit, e-mail me your post to maria@mylifeworkstoday.com by midnight on May 23rd  with “PFAM” in the subject line.  Be sure to also include:

• Your name as you would like it to appear
• Your blog’s name
• Your post’s title
• Your post’s URL 

Heck, if you want, I’ll even throw in some pics if you have them.  I’m hoping that what we gather up in this next PFAM might inspire everyone to have one, great summer. 

Looking forward to your submissions!  

I live with lupus.  I work with and learn from people who are living with lupus or other illnesses that often share similar medications, experiences, doctors, and challenges.  I have a library of books, hundreds of files, materials from trainings and conferences, have a multitude of websites listed in my favorites, have worked directly with patients and health professionals, and have participated (at one time or another) in more than 12 social networking sites.  I have lived and breathed lupus and illness for many years, all the while discovering that there is always more to learn.  One would think that I would be bursting at the seams with some common ‘lupus’ sense.  Apparently not.

Do any of you remember, when you were kids, the Highlights® Magazine  you could find at the doctor or dentist office?  You may see them now, if you’re taking your own kids to their appointments.  In this magazine (and now online) , there is an illustrated picture  where you are instructed to find a list of hidden items.  Some are tough to find, but others are right out in the open, thankfully.  I remember being pretty frustrated when I could not finding certain items, only to realize I had been looking at it the whole time.  This post, too,  is about things that appear one way on the surface, but when you look more closely, you will see things aren’t as they should be.

On the surface, you might think that growing a garden and eating fresh vegetables are good things.  You might also think that I always make the right choices,  since I do health support services as a profession. If you look more closely, however, you will notice some big errors in judgment that I am ashamed to have made, both as that professional and as a lupus patient.  At my age, and at this stage of the game, there are no excuses. I know that you may not see some of the things I am about to mention.  This is where my personal accountability will come into play and I suspect there are many of you out there doing the same thing.  Let’s just put it all on the table right now. 

This picture shows me out there harvesting – at noon, when the sun is at its highest.  I’m out there without sunscreen.  I’m wearing a top that, quite frankly doesn’t cover enough of me in any way shape or form (I really need to either tone up or toss it out.)  My mouth is usually wide open when I harvest the beans and peas, aggravating my symptoms similar to Sjogren’s.  According so some nutritionists, I’m surrounded by tomatoes, that are considered to have inflammatory properties and may cause some people with lupus more trouble than they’re worth.  Well, this person isn’t going without her tomatoes, otherwise her temper will show some inflammation.  It is something to consider, though, when you are trying to gain some management in your flares.

This picture emphasizes what you don’t see.  No hat to shade my face. No water bottle to stay hydrated.  No one helping me do the work.  No thermometer to show me that it was already in the 80’s.  No time out break – I know it’s a small space, but you’d be surprised how long it takes to water and harvest this little patch!  That leads me to my last point in this hidden picture that isn’t so hidden: I have no energy to keep standing, because the sun and heat are already getting to me.

The good thing about this goof up is that I can easily fix it.  Not all things about lupus are that easy to remedy.  I can get out there before 10 am or after 5 pm, when the sun begins to ease up.  I can take a little shower caddy out there with me including a water bottle, sunscreen (to reapply when needed), a little thermometer to check the temp, a light-weight T-shirt to have in case I’m out there longer than I should be, and hard candy to keep my salivary glands active and mouth closed.  I can get a hat that can hang around my neck to remind me to wear it.  I can get a little stool to put out there when I get a little dizzy.  I can ask my two daughters to take some time and help me, giving us a chance to be together and talk. 

When we feel good, we forget.  When we hurt, we remember and curse ourselves for forgetting.

 These pictures show how I only have myself to blame when ( not if ) I feel like crap tomorrow.  Even with all my experience, I still struggle to keep my lupus hidden.  By bringing out my experience and knowledge about what I need to do doesn’t translate into being labeled as “sick” when I’m having good days.  When I’m not ‘at work’, I still need to be willing to acknowledge my responsibilities to my health.  Being able to be out there and by doing things right creates my chosen picture of health.  That is what helps keep things in the right perspective and me still growing.

Last month, I went on a hike through Tryon State Park with my new friend, MLWT Guest Blogger and Acupuncturist, Becca Seitz .  Despite my constant and intense headaches weeks prior, I felt the need to get outside and move.  Preferably with someone to talk to and in beautiful surroundings, which Becca and Tryon Creek provided effortlessly.  During our walk, I was telling her about my headaches and being buried under a great deal of stress.  I had several theories for my throbbing temples ranging from lupus (of course) to changing barometric pressure.  She shared with me some philosophy, which I plan on hitting her up for in a future blog post, that struck a chord in me and I’ve been mulling it over daily since our walk. 

She explained that this philosophy (I believe it is within Chinese medicine) describes a symbiotic relationship between us and trees that involves an exchange of stress.  We often hear how detrimental stress is to our health and wellbeing, causing all sorts of problems within our own bodies and spreading to other peoples’  ‘bodies’ we share our days with.  What we don’t always consider is the wood element in Chinese medicine, also present in Western pharmaceuticals.  Trees have been a part of treating illness for centuries when it comes to medicine, but there is more to that relationship than just the ingredients of the bark we absorb.  The trees are believed to absorb from us, too.  Becca brought up how stressful conditions actually make trees stronger and, if you garden at all, you know to not to tie up your new tree seedlings too tightly to their pole.  The movement from the wind and other forces actually strengthen the trunk during its development .  As we walked along the path through the trees, we spoke of this wonderful idea about unloading the stress we have within us during our walk to make us healthier and that, in turn, we could actually be benefitting the trees around us by making them stronger. 

I’ve been pretty frustrated with the weather here this Spring, as I suspect many of you have been, too.  I thought that it could be because I’m back to sitting in front of the computer for longer periods of time working on several big projects.  Maybe it is because of the gray skies leading to my darker moods, aches and poor sleep.

It could be that I just miss time with my friends and trees, my fellow stress magnets. 

This weekend promises some heat and sunshine, and not a moment too soon. My oldest daughter is graduating from high school and she will be the first to be leaving the nest, so there has been some stress building up within me over that, too.   I know I will be hitting a trail as soon as possible to relieve some pressure and make something good with it, or I will undoubtedly explode. 

Today, I came across a link that leads the reader through a meditation linking trees with de-stressing .  I did it and, surprisingly for me (I don’t like meditating), I actually felt great afterwards. I’d put it here, but haven’t yet figured out whether I need to gain some permissions in writing first.  There’s something else to stress about!  The gist of it is just to stretch, breathe deeply and move gently as if responding to wind.  You can take it from there, but it isn’t anything new.  Just be sure to recognize your own limitations and don’t push yourself too hard.

Wishing all of you a more gentle breeze today and a wonderful weekend~

Today, this post is a catch up response and I need to write it all out, so that I can make some room in my head for the piles still sitting on my desk.  Hang with me today and maybe there is something that will be interesting or useful for you, too.

The first thing I want to mention is that March is Worldwide Red Cross Month.  Although we with lupus are not exactly the donor pool they’re looking for and deal with more than our share of lab work, there are still several ways to contribute back to our community.  The Oregon Trail Chapter of the Red Cross has a blog ,written by locals, offering opportunities to learn more about what’s available here.  In fact, I have recently signed up to take an Adult CPR class in April (as my first step towards some certification credentials.)  Their blog offers other things such as free tickets, local event information and even little snippets like the recent post about a landmark I remember from my childhood growing up in Forest Grove .  The blog is full of information and is now included within my favorites.  I recommend you check it out.

Another postponed task is the “Part 2” of my conversation with Roxanne Black (now Black-Weisheit)—author of the book “Unexpected Blessings: Stories of Hope and Healing” .  It will be posted as soon as I dig it out of the drafts file of my emails, where it’s been sitting and (amazingly enough) never sent itself to her for review.  Go figure.  As soon as she gives the okay, it’ll get it posted.  The book discussion for February and March concludes this week officially, but the discussions on Shelfari.com are continuous. To catch all the discussions so far, click here .  If you don’t get the book we’re covering while we’re discussing it, you can join in later no problem.  Fortunately, I have been able to get the authors of the books to do open question and answer, so if you have any comments or topics you want to cover at any time, please feel free to join in. If you don’t want to join up officially, email me and I’ll do the work in getting your note out there for you (and anonymous is fine.) This book has been less of a discussion and more as a recommended reference book.  Those who haven’t participated in the discussions, but have mentioned to me through the other networks I (Ning communities, Facebook, Twitter) and emails, mention how they use the book as a quick source for inspiration or food for thought.  It is a light read, but one that can easily shed some ‘light’ on those days where all we seem to see is the dark. 

The next book discussion in April will be “Little Bee” by Chris Cleeve.  This will be our last discussion until Fall, as we will be shifting towards different seasonal activities.  This next book isn’t  lupus focused, but is about the enduring relationship forged between two women and the story that materializes from a single choice.  A couple of people have requested it and I have heard that it’s a good one.

You may also have noticed that we’ve added an email registration on the right side of the site.  This acts as a sign-up for events, workshops and target get-togethers, community social events, participation in the P.O.R.T program  and local research projects, and for future notices or invitations.  As I would expect from any site when handling my own contact information, your name and email information is never sold to any third party, nor will there be any marketing solicitations.  This registration is merely a means to connect with you out there both locally and nationally, to help build up our services and information data base.  Of course, you can withdraw your information at anytime by emailing me directly. 

With the weather improving (fingers crossed), I’ve had conversations with readers who are interested in partnering up for outings including quick walks, meeting up for coffee/tea, and other opportunities to get out to enjoy the Portland-metro area with individuals who have lupus or lupus-related illnesses.  MLWT partners with other chapters including the Arthritis Foundation Oregon Chapter , the Oregon Chapter of the Scleroderma Foundation , and a few local support groups including fibromyalgia and Living Well with Chronic Conditions , so the get-togethers aren’t limited to lupus only.  There are other social groups offering similar ‘meet-ups’ for activities, but there is still the concern about the varying degrees of ability we experience from day-to-day that the general group participants/leaders don’t account for (because they just aren’t aware, not because they’re clueless.)  Meetup.com offers quite a variety of opportunities.  I belong to the Portland Women’s Outdoor Club  and I really encourage you to join one!  Our P.O.R.T. program is a more defined social gathering designed for those who feel support groups aren’t for them.  Support comes in many forms and MLWT aims to provide as much variety in offering support opportunities for individuals to find the type that works best for them.

In addition to keeping these outings quick, and targeted towards the level of ability for that day, some of these gatherings will include a local professional or a  MLWT Guest blogger who will join in with the group as we do an activity and talk about topics within their specific expertise.  So, as a means to really sneak in the exercise we (I) often push aside, these local gatherings will incorporate a short educational aspect and opportunity to meet potential local health connections.  These new gatherings offer an additional benefit:  they connect participants directly to the outside community (and form the foundation for our P.O.R.T. program.)  So, even if you have limited energy or experience severe health challenges, the goal is to offer a variety of opportunities to help you bridge with others in-person, which is extremely important and necessary for our overall health.  Some of us have Skype, which is the ability to have audio and video when speaking with others through the internet, but that is still no substitute for the real thing (which we will be hearing more about that in future research, I guarantee.)

Finally, MLWT will be offering a class on a topic for anyone living with chronic illness (pending final review), a workshop on bridging our health and work selves, and specific products that are designed through collaborations with local businesses.  I’m currently completing some professional certifications that will be filling out the rest of this MLWT project in order to offer more specific support services.  It all seems to be taking awhile, which is why it is sometimes really quiet here regarding posts.  However, it is wonderful to be coming up on our second year and seeing this project become a more established community service.  I want to thank many of you who have contributed your time, expertise, energy and stories (locally, nationally and internationally).  You have been key in its fruition. 

As always, if you know of someone with lupus, who may have lupus or you yourself have lupus and want to make a health connection, the MLWT lupus “hub” is here to direct you to available resources within our  community.  Referrals are made only to area organizations, foundations, chapters and other professional sources who all have particular strengths to offer and take their missions about health and wellness very seriously. 

Whew!  Now, back to work.  Wishing all of you a wonderful week ahead!

It seemed like a good idea at the time.

I picked out a beautiful 2000 piece puzzle of Neuschwanstein Castle in Germany for my mom this year for Christmas.  It has been years since I did one and thought that it would give us something fun to do together.  The together part is working out fine, but the “fun”?  We’re still waiting for that to kick in.

As I painfully search for pieces with the exact patterns, shapes, images, etc., I hunch over a disaster that frustrates me into a punishing backache.  I have it set up on a table in our house that takes up the most part of our family room.  There is no way to walk by the thing without looking at the embarrassing lack of progress and returning to that hunched position with a dire need to redeem myself by finding “just one more piece.”  After about an hour of work and 15 minutes of trying to stand up straight, it occurred to me that this death wish of a ‘gift’ feels uncomfortably familiar.

The new year is upon us and, although I resist at the start, I usually end up with at least a few ‘resolutions’ or goals that I put out into the Universe hoping I make my way to them within the next 365 or less days.  “Hoping” is the operative word there.  Every year, I tend to look at the entire year all at once, in all of its possibilities.  And, every year, I find myself overwhelmed with all of the work involved.  Unlike the puzzle, I shudder recognizing all the pieces of my life floating around looking for a place to belong.  I lose steam quickly and create some pretty amazing excuses, distractions and impressive cases of sudden amnesia—all in an effort to completely avoid getting anywhere in my big picture.

The thing is, my life is consumed by these unmet goals or resolutions just like that table is fully present in my family room. I can’t get through a day without noticing how little progress I’m getting to something that really could be beautiful, too.

Now, this doesn’t mean that I don’t accomplish things, because I certainly do.  What I’m not happy with is that they aren’t the ones my heart is aiming for and are often downsized for various reasons.  For the last two years, I’ve come up with some general goals allowing myself to ease up on some of the pressure in completing them.  That hasn’t been working out.  I’ve noticed lately several people talking about choosing only one word to focus on for your year, giving yourself something to look for in every day whether it be peace, joy, laughter, gratitude, and so forth.  The only work would be to find something in every day that reflects the word you choose.

I don’t trust myself in doing that.  I have been generally stating goals such as “better health” or “get in shape” thinking that they cover the bases. In reality, they leave me off the hook and unmotivated.

Perhaps I just need to focus on a visual reminder to get me through this year.  Puzzle.                                                                 (image: Buffalo Games)

This year, I chose only five goals that I want to see myself accomplish and complete.  I am viewing each goal as if it were a part of a big puzzle.  With Neuschwanstein, I am breaking the whole thing down by working on the sections of the picture: castle, lake, and branches.  With my goals, I’m using the same process and one that is recommended whenever we put together our action plans to address personal goals.  By having objectives that are specific and measurable, I’ll have direction, more focus and know when I’ve completed the tasks.  That will eventually make up the goal, because each image will become clear with every piece I place.  One of my five goals is still about improving my health, but I think I’ve come up with a more targeted action plan and already see positive progress.  Eureka!

One objective I’m using to measure my progress this year to “Build More Health Opportunities” (both for this project and myself) is choosing resources that get me to be more physically active and outdoors.  My current gym membership—you know, the one I made a big deal about starting last year?—expires in March and I’m not going to admit to you how many times I actually ended up going.  Let’s just say they were pretty darned expensive workouts.  The good news is that I do better with actual deadlines imposed on me by others AND I’ve found a way to integrate the gym experience more into my daily life.  That’s a whole ‘nother post, though.

This past week, I went to my first PDX Meetup.com group called Portland Women’s Outdoor Club .  The registration for this group grew so quickly and, I suspect, will continue to do so, as many of us celebrate in the realization that we can find others at similar physical and skill levels to motivate us to get out there.  There is a great mix of skill levels, interests and ages among the women who attended the first meeting.  I was happy to hear that the activities that I want to take part in more often and learn for the first time were shared by the majority of gals there.  Beginning mountain climbing/repelling, hiking, backpacking, and snowshoeing (although I really need to work on my stamina for that one!).  It was easy to find someone who had a lot of experience in this group in these particular activities who could lead the rest of us newbies.  There are also some pretty creative gals in coming up with some other options when the Oregon winter just isn’t something we feel like experiencing.  I haven’t gone to one of the activities yet, but my curiosity is peaked about this Wednesday’s gathering to learn how to make a coke can alcohol stove (for those ultralight backpackers  in all of us.)

 I will go ahead and cross this objective off, because I’ve signed up with an opportunity and met some of these gals—my biggest hurdles.  I am really excited and encourage any of you locally to check this group out.  The more people, the more options, more opportunities and all the more likely I will take part.

I hope to see you, too!

The LFA Pacific NW Chapter will be hosting their annual Mad Hatter Walk N Roll for Lupus event on that day at Magnuson Park at Sandpoint Way.  Step out to join your community – both the lupus community as well as your Seattle one – and present lupus with energy and fun, something we know there is usually so little of in our daily lives.  Get your families involved, even if you didn’t raise funds (which doesn’t have to be much and does help our PNW).  The more we are present, the better our ‘present’ feels knowing we aren’t alone in this. 

A special guest will be on hand to offer up her recent book, Despite Lupus (Four-legged Press, 2009) – Sara Gorman will have some of her books on hand to sign and sell.  She is an AWESOME gal – just meeting her is a gift in itself.  We will be having her join in on our November group book discussions to be mentioned later.  For now – go say hello to her and all the others who are there to spread the word:

Life is ours and we want you to see that we are living as well as we can, despite lupus~

We are beginning a group chat today about the book by Tina Vindum (2009) entitled Outdoor Fitness.  You might wonder why, especially for us Oregonians, we are going to cover a book like this as we head into the winter season.  There are a couple of reasons for this particular choice:

The first reason is that, here in the Pacific NW, we have a whole lot of gray and damp winter weather.  Since many of us feel more pain due to the dampness, we resist moving and that choice makes our pain even worse in the long run.  Remaining a little physically active is important in managing the pain and flexibility, but I know staying indoors doesn’t work for me when there is a sofa beckoning me to watch another movie.  This particular book brings out ways to physically move in everyday outdoor spaces that gets us out of the house, hopefully offers us social opportunities to share it with friends and family, in addition to getting us moving without thinking of it as “exercise”. 

The second reason is also about the weather.  I know how much rain we get and the fact that it will be flu season here shortly.  If you have lupus, even if it isn’t technically discoid lupus where skin is involved, the sun creates some trouble for us if we are out in it too long.  As with even ‘healthy’ people, a sun tan is your body’s natural defense system – and one in which alerts your other ‘systems’ that there is a pending threat.  This response may not cause you rashes or lesions (as it does with individuals with discoid lupus), but it still gets your immune system in an uproar and will potentially cause you harm wherever your lupus presents itself.

Choosing cooler temps and less ‘stressful’ conditions to challenge your body while exercising makes good sense.  You can choose morning and evening workout times during the summer, but I know many with physical pain find they loosen up and move better later in the morning or early afternoons.  For those who struggle with fatigue, waiting until after work or exercising in the evenings just taxes you more than you are already feeling after a long day.  Yes, there will be rain – but we don’t melt when it hits us, it is easier to remain cool and the air is easier to breathe without dealing with pollen.  Gyms will be festering with recycled air and bodily fluids – sound inviting?  We aren’t talking about aiming to build lean muscle – unless that is what your goal is.  What this group chat is about will be to get us moving, even a little, and doing it in a way we feel a part of something good for us, active within our local neighborhoods and living with lupus out in the open on our best terms.

I know that our illness – the fatigue, the weakness, the medication side effects, the clots, migraines and sometimes constant chronic pain – can get in the way of our seeking to remain physically limber, flexible and as healthy as we can be. Fact is, we with lupus have increased risks of diabetes and heart disease and that is a sobering reality, but sometimes still not enough for us to push ourselves more than we already feel pushed around.

This book may have an athlete talking about getting into the best shape ever, but the concept intrigues me. I also want to become less secluded, more social and begin really appreciating the place I live….but at my own pace. I think her ideas or recommendations on using every day outdoor structures such as parking meters and trees are inventive and cheap. How many reps will always be up to me, but I need a little kick to my flabby tush in getting going.

Thus, this group book chat. I envision that we will read, discuss, critique and set an agreed upon individual target for each week – personalizing those activities based on our health, our doctor’s okay and our own goals for what ‘activity’ means to us.  It will also offer us a chance to meet more locals who will be joining in and maybe looking for a buddy to keep us honest.

No pressure, but perhaps a little spark of motivation – I want to keep this fun.  You don’t live here in the Pacific Northwest?  No problem – hearing from you and what you’re doing in your neck of the woods only adds to learning more innovative ways to move, no matter what your address.  We look forward to hearing about your adventures, too! 

So, here we go!  Looking forward to meeting and moving with all of you!

So you are probably groaning right now and understandably so – lame title, I know.  However, it fits what has been going on here and I will explain a little about the silence in my posting for the past few months. 

I thought I would throw in another photo from our trip, no matter how poor the quality.  This is time spent with family and friend at the Wurstkuchl in Regensburg,acclaimed oldest sausage house in the world.  Right on the Danube and great food (love their mustard and brought some home) - I found this short video from another visitor during the winter that gives you a little peek.

Seems that after I had so many wonderful writers visit in the month of May, I felt just a little nervous getting back into the driver’s seat.  It turns out that there were many reasons for that paralysis, not just intimidation.  After spending some time, money and energy since my return from vacation, things as been busily brewing.  With an improved focus, rested sense of self and an incredible resource network to draw from, we are back on track.

So here is a quick rundown of some of the things we will be posting about beginning tomorrow:

Summer wrap-up ~  Some of the events, people, places and experiences that have been noteworthy for MLWT, our guest bloggers and myself.

MLWT Announcements ~ Keeping you updated on what is going on here that will offer you some ideas and opportunities to learn more about your local lupus community. 

Pilot Program Participant Recruitment ~ We are unveiling a new communication curriculum ready to be offered locally.  Any individuals interested in exploring a different way of expressing themselves and their illness (lupus and lupus-related conditions/syndromes/diseases) to those they share their lives with can sign up to be part of this action research project.  Portland-Metro, Vancouver, WA and south I-5 to Salem areas only.

Local News ~ Regular highlights of local resources, events and programs to know about regarding living, learning and lupus.

Book Discussion Groups ~ Beginning September 1st, we will be reviewing, discussing and putting into ‘action’ our first book choice for the next couple of months continuing through June 2010.  Discussions will take place in the MLWT Bulletin Boards.

People2Meet ~  We will be spotlighting individuals who we think are making a difference in living well – no matter what their challenges may or may not be.  We are taking submissions from you out there of people you think deserve a moment of gratitude. 

Invisible Illness Week 2009 ~  Begins September 14th and we will be following up on some of the topics being discussed during the week. 

Portland‘s Mad Hatter Walk and Roll 2009 Countdown ~ Some ideas on how you can easily contribute to this local OR annual fundraising event…even if you can’t make it to the walk!  Be sure to visit the LFA Pacific NW Chapter’s Firstgiving page for more information on contributing both here and in Washington State.

We’re getting busy as we head into Fall…you might say we’re going back to school, too!

We inadvertently embed music into our thoughts, especially while we’re young building and experiencing our lives.  Do our brains know that we will, at some point, need this music to take us back to an earlier experience as a means of helping us get through a new one?  Music does that for me when I lose my bearings on who I am now, living with lupus. 

There are two songs that have been pretty significant in my life and my health, that just happen to be associated with experiences a decade apart.  The connection between these two times and tunes illustrate to me that there is a thread we follow in life, well or not, that I need reminded of in order to keep moving forward.

In the early 80′s, I decided to take $300 – all that I had- and backpack down through the Baja Peninsula (California) to the southern tip of La Paz and Los Cabos.  It was as if I’d lost control over who I was and something else jumped in to decide my future for me. With a last minute tag-along by my friend “Sandra”, I just let it all go embarking on a journey to a glorious unknown -because we were young and, therefore we could.

When we decided to hit the mainland and visit Mazatlan and Puerto Vallarta also, we found that we couldn’t talk them into giving us ferry tickets.  Two Canadian windsurfers were our only way onto that ferry and stowed us on their VW Camper (Van) making us a part of their ‘crew’.  We jumped at the opportunity, because we were young and, therefore we could – and besides, …well, never mind.

I tell you all this because it sets up the first song that I keep in my ‘life with lupus’ playlist.  It was the one playing while sitting in the passenger seat of that van next to “Max” and on our way to Puerto Vallarta - “Road To Nowhere” by the Talking Heads.  I can still hear the motor of that VW, see the beautiful flora all around, feel the warm breeze through the windows and thinking- while listening to that song- how grateful I was that I let go for just a moment to be there – on an uncharted journey of mystery (of course, I didn’t realize at the time that his name really wasn’t Max), of risk, of learning, of romance and awe. Granted, there were Coronas involved, but I still hold onto these feelings of it all… being so overwhelmed one minute, then finding myself craving more the next.  I knew that I didn’t want this journey to end, when I would have to go back to a life that I didn’t feel a real part of anymore.

Ten years later, another song and experience found their way into my life and involved a car once again (which offers a handy metaphor here).  This experience was different, though, …or so I thought.

While in the middle of a brutal divorce and my first year of graduate school, I had gained nearly 40 lbs. of water weight due to, what my doctor at the time concluded, “a low-level depression”.  I knew things weren’t looking good for me, but I chose to focus on my girls and the amount of stress they were being put through at that time.  After taking them to Disneyland, what I thought would be a great farewell, I met up with a new doctor who got me a ticket into a new crew of physicians that took the time to help me.  My first doctor ignored my plea for general tests before exploratory surgery, calling me “uncooperative” and I chose to move on to someone else- it was my body and, therefore, I could.  My new doctor asked me to pee in a cup, anything I could muster, and told me what I already knew was true:  I had lost my kidneys.  I remember being so grateful to him for telling me, even though it wasn’t the news I wanted to hear.

Today, thinking back to that hospital room and isolated from everyone I knew, I can still feel the mystery (of course, I didn’t know what lupus was at the time) and the risk I felt in possibly losing my daughters.  Or the romance of being catered to, even if it meant being drained of blood every morning at 5:00 am.  Granted, drugs were involved in an effort to try to bring my kidneys back home to me, but the feelings were real.  The awe I felt about my body telling me, once again, that I no longer held a sense of control in deciding my fate.  I cried an entire day in that room and, when my doc returned to go over preparations for dialysis, he asked me what I had done.  When I told him that I simply cried, he told me that it had worked.  My kidneys were back to functioning (“somehow”) and I could go home. 

I didn’t hear the soundtrack for this experience until they forced me out of that room, which felt like I was being born all over again.  Sending me out into a cold, parking garage where my ‘ride to somewhere’ Geo Metro was waiting to take me back to a life that I didn’t feel a part of anymore.

After sitting there crying in my car for what seemed to be hours, I thought about how I had chose not to allow anyone to tag along on this trip and that I preferred to go solo. I knew I couldn’t do that, though – no matter how difficult it would be to not speak the same language or have all the uncertainty about my future packed into my head during my five day hospital stay.  I suddenly realized how grateful I was to have my daughters and friends to go home to and how overwhelmed I felt that minute, yet craved a chance to make this new journey my own.  At that moment,  I slowly turned the key in the ignition.  When the radio came on, the lyrics of the song told me my course was true: 

“The moment I let go of it was
The moment I got more than I could handle
The moment I jumped off of it was
The moment I touched down“

(“Thank U” by Alanis Morissette 1998, Maverick Records )

“Thank U“ ~ for the music that takes us back to those memories, reminding us to let go and be grateful for not knowing too much about where we are headed.  Last year, I celebrated my tenth year anniversary with lupus and that dialysis isn’t a threat right now.  My kidneys are still tagging along at 100% – because we’re a team and, therefore, we can.

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Remember:  MLWT is hosting a call for guest writers living with lupus or lupus-related conditions to send in submissions.  A variety of voices will be posted throughout the month of May for Lupus and Fibromyalgia Awareness Months.  The theme for submissions is “What lupus means to me…” and are due by April 25th.

1)  Because there are really more important things to be putting up on here for those of you out there.  If any of this stirkes a chord, I’m glad.  If it doesn’t, then hopefully I’ll get you something soon.  And,

2)  I’ll have finished something – finally.

#1 Personal Secret:  I’m a Pacific Northwest (PNW) slacker.

In my younger years, I used to be very active with sports (before they cost kids and their families their entire childhood and life savings).  The nice thing about sports is that the fun and team atmosphere completely glossed over the fact that we were exercising.  The practices held after school gave us reasons to not have to get to our homework or sit around at home with the boring ‘rents.  The games and uniforms gave us a sense of purpose and belonging.  I truly enjoyed all the teams I played on and figured that I would keep it up throughout my life.  Fortunately, I did until my children came – that was exercise and fun with a new team.  Unfortunatley, I haven’t played on a team until my buddy down the street asked me to fill in on her softball team.  Although I only played a few games, I realized in that short time just how bad things have become for me.  Last year I couldn’t play because the lupus was triggered by sun and I sat it out just in case.  This year – lupus or not – I’m playin’.

In my younger years, I lived in downtown Portland and I didn’t own a car until I was 25.  My primary mode of transportation was either my bike or my feet.  I only took the bus when I had to get to work and riding my bike from North Portland to NW at 1 am didn’t sound appealing (of course, I ended up walking because the buses stopped running at 12:30 am).  I was in the best shape I had ever been and I was exercising, again, without thinking about how it was exercise.  I just did what I had to do and loved the adventures that were usually experienced on the way – window shopping, street vendors, catching other people’s conversations or stopping in for a coffee to watch people go by (La Patisserie – before Starbucks – at the Galleria, -I loved that job).  Now, I own DVD’s with exercises on them that I visit once in a blue moon because I can’t cough up cash for classes and don’t do any of those little jaunts off my wearily-treaded daily routine.

In my younger years, I used to hit places all over the state skiing, camping, climbing, riding – either through coordinated programs, bike rides I would lead when living on the coast, taking friends out on groomed trails for their first time or summer camping excursions. Last year was the first year in six that I didn’t camp and visited the coast only once.  I didn’t ski either – although this year I got out to do some urban skiing and it was great.

“In my younger years”…

Honestly, what is it about age that brings about this settling for reminiscence?  I believe that the physical life I led postponed the inevitable trigger of my lupus and I have been milking off of those wonderful years for the last decade.  It has all caught up with me, though.  At the age of 45, I may weigh the same as I did then, but I’ve replaced the muscle and vigor with fat and fatigue.  Not just because of illness – also in part to being unmotivated.  Okay, lazy.  Granted, there will be days that I won’t be able to do it – but I have fallen into a rut of assuming I can’t rather than committing to try.  I would love to have some company – it’s more fun for me that way – but if it will only be me, that needs to be good enough.  The point is that I need to start taking care of myself better to get me through the years ahead.  It’s also to re-acquaint myself with this beautiful part of the country that offers us so much.

This last secret is one that I desperately needed to purge because I have said many times in previous posts how we need to learn how to live well with lupus “PNW style“.  What I have to finally come to terms with is that I don’t remember what that means.

This year, I’ll be doing more connecting with the PNW and my local communities directly.  I admit that I resist going when it’s easier to stay home.  I resist getting out with my friends who, in the past, have struggled with my last-minute calls saying I am not up for going.  I think if I made commitments with others who I know (no on else needs to) who might also have a slower pace on some days or can’t make it an all -day affair), then I will be much more likely to go.  In 2009, therefore, I am committing to:

• participating in a Hands on Greater Portland volunteering event once a month and will be hoping that those of you in the area will join me. 
• I will be attending a free outdoor activity monthly - either a sponsored nature walk, a casual game of tennis, or any physical activity that I can put together  with other services (e.g. exercise program thru the Arthritis Foundation Oregon Branch)  and I hope you will join me. 
• I will continue to attend once a month free seminars, presentations and community events that I hope you will join me.
• I will be visiting and supporting local merchants, libraries, organizations and neighborhoods to improve my awareness of resources available to us here – I hope you will join me on these excursions.
• Personally, I’m going to make for time for family getaways to the beautiful places in Oregon and Washington.  Most importantly, I will stop seeing my age in terms of numbers or a collection of my past experiences and get out there to learn and enjoy …while I still can.

I hope you will join me.