The urgent note I want to mention is that, although the group has moved to the Multnomah Arts Center , which I’ve had posted on the site.  This meeting had to be changed back to the old stomping grounds at the Beaverton Library on 12375 Southwest 5th Street . Due to road construction and the Farmer’s Market, the time has also been changed to begin at 1:30 with Andrea coming on at 2pm.

I hope to see you there~ trust me when I say this is a fun way to spend the afternoon.

“You grow up the day you have your first real laugh at yourself.” – Ethel Barrymore

In April, the MLWT book discussion group on Shelfari.com hosted Carla Ulbrich’s  book  How Can You NOT Laugh At A Time Like This? (Tell Me Press, 2011), where Carla herself joined in.  I was drawn to this book simply because I strongly believe in the value of humor as a healing force.  Anyone out there offering me an off-beat way of looking at life with a chronic health condition is numero uno on my list. 

This month was Lupus Awareness Month and in the past I’ve usually jumped on the band wagon to promote the services, programs, websites and blogs that I think are beneficial for those of us out here living it day in and day out.  However, a strange thing happened on the way to my blog this month, … 

I know I’m a coordinator for a network aimed at linking people, service programs with information about lupus, but I just couldn’t muster up the motivation this year.  I really wanted to celebrate us as whole individuals and find the lighter side to life with lupus, but I have fallen flat in the past when I’ve offered opportunities in having some fun with the lupus trials and tribulations during a time when everyone truly wants to take things more seriously.  I know we struggle and want to be heard, but I really had a hard time with giving lupus the spotlight.  I wasn’t alone, either.  After writing (and working) for lupus advocacy and awareness for the last three years straight, I find myself with many other veteran health bloggers who are expressing a need to regain some perspective. 

I credit Carla and her book for my resistance to give lupus too much air time.  Her book puts living with lupus right into our own laps. This mirrors my shift in what I do here and I heard what she had to say loud and clear.  Many books out there speak about the challenges faced when seeking out quality care or figuring out how to deal with strange symptoms.  However, these books usually appeal to the readers with a sympathic undertone as if we’re at the mercy of our health.  I didn’t get that from Carla, even though I am certain that she is a very caring individual.  She connected with me through irony and that was refreshing.  I tend to deal with personal stress in a more problem-focused, instrumental way initially.  I prefer to deal with the lupus first and not reflect on how I respond emotionally to it. 

Rather than being a how-to book on surviving lupus, Carla’s book focuses on weighing the necessary evils of life with a chronic illness.  Yes, medications aren’t the wonderful panacea Big Pharma would like you to think they are, but treatment options have come a long way in offering us something to consider in order to gain some balance.  Yes, eating more healthy and being very conscious of what we put into our bodies is important, but it isn’t easy and will take a lot of work that will be worth it in the long run.  Yes, life with a chronic illness is crappy, but to continue to carry that perspective in your heart and mind every day will take its toll on you in more ways than a black cloud over your head.  It may mean your health will only get worse. 

She writes about the no-nonsense stuff we all experience with any health challenge.  Personal choices in nutrition, medical care and treatments, finances and work, relationships with others and ourselves, the value in educating ourselves with options and being responsible when making decisions.  And, underneath it all, Carla delivers her thoughts not as a know-it-all or health guru, but as a gal you love to have with you on a girls-night-out.  You know, that tone or feeling of being a little rebellious when you’re out with your friends looking for some fun, while needing to connect with the people you trust to divulge the ugliness life can bring into your life?  When you can announce that sweat pants are your favorite thing to wear lately and then mention you’re frustration in having to admit it to yourself, only to find that your friends are nodding their heads in unison. 

I’m grateful to Carla for dropping by and taking part in the book discussion.  I’m even more grateful to her for offering me a book that I can return to over and over to read when a girls-night-out isn’t in the energy cards for me at the moment.  She backs up her points with research that is easily traceable and from quality sources.  She takes the temptation to focus on being victimized by the disease and reminds us to re-focus on being our own best friend.  She points out that this world is full of people who either mean well or just won’t get it, then she follows up with some good tips and recommendations to do for yourself that will leave those people standing in your dust.  We can’t do much to change others, but we can do a lot to change the way we choose to take care of ourselves. 

Her book’s title is perfect and she writes about lupus in the truest sense of irony:

By definition, irony means using words that communicate the opposite of a literal meaning.  In her book, Carla writes about lupus as a hellish, unfair and isolating experience and then offers us her perspective where she suggests that living with it can actually be funny, victim-free and an opportunity to appreciate the valuable relationships in your life. 

Beginning with the one you have with yourself.  Let go of some of that pressure from your own emotional build up with a laugh and allow yourself to recognize how ridiculous some of your challenges are for you.

 Then, get busy.

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You can also find Carla online at Carlau.com and The Singing Patient.com , as well as Facebook .

Just a quick note~ 

Today begins our April MLWT book group discussion on Shelfari.com   and we are featuring Carla Ulbrich’s  How Can You NOT Laugh At A Time Like This? .  In fact, Carla has joined in on Shelfari and will take part in the discussion as well! 

I missed out today, but I’ll be starting things up tomorrow with some reading and a few notes to get things going.  If you haven’t read it, or don’t have it yet, remember that these discussion are on-going and you can join in at any time.

Hope to see you all there~ I suspect there will be some chuckles to be shared.

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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.

The inspiration for this project was taken from various website sources on the late Saul Steinberg’s work from the 1950’s and 1960’s  You can find more of his work at  Martha Stewart’s website  or even by simply searching  his name in Google images.   My theme for the week will be to illustrate (illuminate?) what living with lupus can be like for me.  Today, I’ll introduce you to Maria’s Lupus.  Stay tuned for the antics that are sure to follow.

So what are you waiting for?  Grab a paper bag, get creative, and show us your pics.  Submit them to me at maria@mylifeworkstoday.com or Leslie’s  blog.  If you’d rather post your photos directly on your own blog, then share the link with us so that we can share them with our readers during this week.  I will put together a new page to showcase them all! 

A couple of things to keep in mind: 

1. NO plastic bags.  Paper ONLY.  (Obviously)
2.  We know that many of you may have more illnesses than fit on the paper bag. Represent what you want to and leave out the rest, if you’d like.  It’s all about you~

Check here throughout the week for my theme “Living With Lupus” and be sure to visit Leslie’s  blog for more examples and contributions from others (also on our blog here through the official Invisible Illness Awareness Week September 13-19th.  I’m sure you’ll find something to get your creative juices flowing.

Looking forward to ‘seeing’ what all of you have to share and meet all the new faces out there!

Personally, I’ve been under a lot of stress lately and getting a chance to relieve some of that pressure with a good chuckle sounds like a pretty good idea.  I have been trying to take up on of my new pal, and MLWT guest blogger, Andrea Crisp’s invitation to join one of her Laughter Yoga classes for quite some time.  Something always seemed to come up and I have had to reschedule more times than I’ve wanted to.  For the past three weeks, I have been dealing with brutal headaches that I’ve suspected were due to seasonal allergies, even though I’ve never really thought of myself as having allergies.  That seems to be the case for many people this spring, as the local news and doctors have been saying this is one of the worst seasons they’ve seen in quite awhile.   So, after cursing at my head for this long and backing out of commitments that I’d been looking forward to, I have committed to attend the celebration she and a fellow colleague will be holding today at Whole Foods Marker in NE Portland at Noon today. 

Here is her post on Portland Laughter Yoga  and the World Laughter Day celebration.  I am hearing more about this form of stress relief and ‘exercise’ building some wellness momentum.  I’ve been going through cold and sinus pills, home remedy attempts (like rinsing my nose and heat packs placed on my face), sensitive teeth, pounding head, light sensitivity and so on, without any relief.   I know that if I don’t laugh at this point, I’m going to cry. 

Laughter is showing up in more studies as it pertains to coping with illness and I hear many individuals who are living with illness referring to how keeping a good sense of humor has helped them get through some very difficult times.  To learn more about the health benefits of laughter, revisit our post about it here.

Come join in on the fun – either by participating, observing and learning, or commiserating with me about this allergy Hades we’re all going through right now.  We have added Laughter and Lupus as one of our MLWT Target Practice topics and Andrea will be the leader for this workshop gathering.  She will be available to answer any questions you may have about this unusual, yet effective, health alternative that won’t require taking another pill.  It won’t even require agility or flexibility~ it’s not that kind of yoga.

It simply requires a pair of lungs and a willingness to tap into your funny bone, for the health of it.

I’m sneaking in a greeting to all of you this Spring celebration of faith and renewal~ 

I want to share this precious card I received from my friend, Linda. of her sweet companion, Dagny.  If you are worried about this poor little pup being put through this photo, don’t be.  Dagny is pretty certain that she is human—to the point of spending little time on all fours and most of the time standing next to you at eye level.  She owns anyone she comes into contact with and that is apparently true for most Golden Retrievers.  Thank you for the smile, Linda!

The card, if you’re wondering, was created through Shutterfly.com ~ a great website and company that gives you so many options to personalize some fun projects.

We hope you are enjoying your day free or with minimal discomfort and surrounded by loved ones.  If you are spending some time alone, know that we are sending our love from here, as always.

Maria

It’s been about 15 years now that I’ve woken up feeling hungover.  Sound crazy, or maybe like I have a “problem”?  I’m not in denial, I do have a problem, but it’s not with alcohol.  I have 4 problems, and they’re all under the ugly beast of “auto-immune diseases”.

Polymyositis

Sjogren’s Syndrome

Raynaud’s Phenomenon

Scleroderma

If that all looks like a list of strange and foreign words, it is to me as well.  I am not alone in the world of Lupus where each diagnosis is a unique and exotic mix that is specific to the patient.  Rarely does Lupus run by itself, it likes to bring along its annoying friends that are very difficult to recognize and diagnose.  After 15 years of doctor’s appointments, countless surgeries, and many unpleasant tests – this is my own personal exotic diagnostic cocktail. 

I won’t talk about each one, or what it means – because really, who cares?  What really matters is how each of these little gems affects my every day life.  Auto-immune disorders are very difficult to diagnose, because really it’s a bunch of inconveniences.  Unless you’re really in touch with your body, it’s easy to blow-off symptoms.  Just ignore them, and hope they’ll go away, until something really awful happens.  For me, it was my Lupus & Sjogren’s manifesting themselves in my lungs – which took 2 years of complaining to my PCP about a cough, 5 different inhalers, 3 X-Rays, 2 rounds of pneumonia, a CT scan and finally an open lung biopsy to diagnose active auto-immune disease rampaging my lungs.  I canned the PCP, lost 30% of my lungs to Pulmonary Fibrosis and am on an aggressive immune suppression therapy to quiet the chaos.  So what’s an annoying cough to someone else was life threatening for me.

After finding the right combination of doctors (I call them the “Dream Team”), I am feeling much more like my old self.  I’m not crazy about all the meds I take, but they really are making me feel better.  My voice is stronger (yippee) and my cough is not as frequent.  I have much more energy for my kids, and doing the things I love – like cooking and traveling.  Things just seem a little easier when you’re not struggling with huge organ issues.

What is living with auto-immune disorders really like?  To make it more real, I thought I’d do a little Facebook style list:

“25 Random Things About A Day With Lupus” 

I start every day with 8 pills, and take 3 more later in the afternoon when my stomach can handle it

I am always tired

The sun is not my friend, and I’m always covered up

Sleeping is hard, because I’m uncomfortable laying in one position

My skin is very uneven

I cough all day (annoying myself, and pretty much everyone else around me)

My skin is thick, so getting an IV is difficult.  On the flip side I have no problems with mosquitos

The skin on the tips of my fingers split at the slightest annoyance

I can’t be in a room with strong perfume or odor without breaking into a horrible (as in EVERYONE is staring) cough

I can’t walk up more than a flight of stairs without resting

My eyes are very light sensitive

Most days I come home from work & sleep for an hour before I tackle dinner

I am dry everywhere – I am never without a water bottle and lip balm

My muscles fatigue so easily, I sometimes have to blow-dry my hair in 2 installments.  My arms poop out too soon.

I apply sunscreen every morning

I have my blood drawn once a week to check all my organ functions

Noise startles me

My fingers turn wax white if I grab anything out of the freezer, so I need to be super quick

I wear mostly flip-flops, as the skin on my feet is so sensitive I get blisters after an hour in shoes

I leave for meetings early so I can sneak a nap in my car when I get there

I save my words – because if I speak too much (which is part of my job), I will lose my voice

My hands & wrists hurt all the time, so I have terrible handwriting

I can’t chew for very long, so bagels & power bars are out

I’m suspicious of even the slightest sneeze, as getting sick isn’t an option

Worst of all, I wake up every morning feeling hungover. 

If this list seems depressing, it’s not.  It’s the every day hurdles that so many people face in silence.  My life is full, and exciting.

I own a successful business, volunteer at my local school, am an active member in the Entrepreneur’s Organization (EO), have been married for 22 years and have two beautiful children.  If you met me, you would never in a million years guess I had any of these problems.

May is Lupus Awareness Month.  Do something special and sponsor someone for a local Lupus Walk .

Every donation (large or small) brings us closer to a cure.

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Maureen is one very busy gal!  She has a tremendous outlook on life that exudes an adventurous fervor, a thirst to learn and challenge herself – all tempered with a bright smile and great sense of humor.  Her business is Birdsall Interactive, you can find her on Twitter as @birdsall and on Facebook, too.  Check in on her – she’s a wonderful source for inspiration!

That seems like a simple question, and yet answering it is something many of us struggle with on a daily basis. Our lives are busy, filled with activities from morning until night. A diagnosis of lupus can really throw a wrench into the works. Sometimes lupus means being stuck in bed, struggling through a day filled with pain, or being too tired to go out with friends. Naturally, this is frustrating. For many of us, seeing the negative effects of lupus is easy. The harder part is learning to find the positive, but that is an important part of the journey with lupus. 

When I was first diagnosed with lupus, I was in the process of returning to school to complete teacher certification. Unfortunately, my lupus quickly brought that endeavor to an end. I thought I knew where I was going with my life, and then suddenly I didn’t anymore. My husband and family were supportive, but they could only help me so much. A lot of my struggle was internal. I didn’t know what I supposed to do with myself once my lupus made me too sick to work. I felt like I didn’t know who I was anymore. 

I sought refuge in something familiar – knitting and crocheting. I’d taught myself as a child, and it came back to me quickly. I could do it on the sofa, or even in bed if I needed to rest. The fiber arts became my comfort; this gave me something to do with myself. I read about knitting and crocheting, learning all sorts of new stitches and patterns. I read about related subjects, too, and I learned to card wool and spin yarn, I learned to make dyes from plants and dye my yarn, and eventually I even got a loom to weave yarn into fabric.  I started to sew again, and make my own clothes.  All of these efforts didn’t just keep me busy, they gave me something to focus on other than my pain.  Not only had I found something to do with myself, I had also found something I could enjoy, something to be proud of.  Through this process I remembered that I love to learn, through reading, through new challenges.  That is an essential part of who I am. I wasn’t lost anymore.

There were still days when I was miserable, and my cats were a great help on those days. They didn’t mind at all if we had to spend the day in bed, as long as there was a good spot where they could curl up.  They kept me getting out of bed on those rough days, since they expected to be fed no matter what. They entertained me with their antics and made me laugh.  I loved them so much for that, because laughing felt really good. So did singing along with my favorite music, and hugging my husband.

I came to realize that these are the things that are important to me, and these are the things that make me who I am.  I am still a bookworm with an odd sense of humor.  I still love, I still laugh.

This journey didn’t happen quickly. I’m seriously stubborn, and change can be difficult for me.  I have had lupus for almost nine years, and there are times when I still struggle.  I do know, though, that in many ways I am still the person that I was before lupus. Lupus will never change any of that because I won’t let it.  Lupus may have changed me physically, but it won’t change my spirit. 

So what does lupus mean to me?  Lupus may mean making some sacrifices, but it doesn’t mean sacrificing who you are.  Lupus means remembering every day what it is most important, concentrating on what is most precious, and never letting go of any of that.”

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Christine is “ a vegetarian, cat-loving, bookworm who creates historically-inspired, eco-friendly fashion and tries to live the green life, all while living with lupus. “  You can find her on Twitter as @windyhill, on etsy.com , and on her blog at Lupus Girl.  Stop in and say “hello”!

Knowing that, why is it that I have to constantly ask myself:  “Who is on first”?

My living with lupus and watching a game of baseball are a lot alike.  In fact,

 being the fan I am of  baseball, there are many commonalities with lupus that I want to remind myself of.  Maybe seeing these connections as I head into Spring will help me feel more motivated in paying closer attention to my own game:

All ‘players’ look like they can play just fine, until they either hit the field or the batter’s box.  There are on and off days, no matter what uniform you’re wearing.

Generally, there are coaches and umpires all screaming at us to do this, that or let us know how we’re doing.  In fact, they sometimes reside within our own heads. 

There are frequent tests and concerns about lab results, occasionally culminating in some pretty harsh judgments when meds -like steroids- are taken (granted, they are not the same ones athletes use)

We’re always pitched to, thrown to, batting at or having to catch a ball -  usually from someone else. 

There’s no place like home(plate), but you’re still important if all you do is bunt or sacrifice - it’s sometimes necessary to advance another player for the good of the team.

The game may be slower paced, but the strategies involved with winning the game are very important.

The amount of money that is exchanged is mind-boggling.

There are days when we strike out or hit it out of the park – either way, we need the support of those watching from the stands.

We made not make it to the majors or the World Series, but the importance of training and our gritty determination will get us through the ‘off-season’ as well as the ‘playing season’.

I think the most important comparison is the fact that this is a team sport.  One player doesn’t win the game and communication, trust and good sportsmanship offer us great opportunities to stay in the game with a strong team.  You may or may not be a baseball fan, but living with chronic illness is quickly becoming an American ‘favorite’ pastime -whether we want to play it or not.  Grab yourself a mitt, pull together some teammates and prepare to play ball the best you can.  Develop signals, practice time outs, resist storming the mound, be on the constant lookout for the ‘refreshment’ vender…

and no matter what, always know who is on first!