It’s Friday and I am quickly losing my steam to blog, so I’m putting up a link that reflects a little about what is going on with me lately - lab tests.

After having successfully avoided going in for routine lab work and doctor appointments for over a year ( “funny” how having no money for healthcare makes procrastination so much easier and legit ), I know I have got to go, because I’m being completely irresponsible.  I know the economy is in crisis and that credit cards need to be taboo right now, but I HAVE to go in - even if it means getting a toungue-lashing by my doc. A well-deserved one, I might add.

This may be news to some and not news to others, but if you are looking for a reasonable resource that will give you the quick and dirty about conditions, their typically related lab work , some latest health research or news and the option to have it in many different languages - this is your link:

www.labtestsonline.org/

This is a great spot for those of you who are starting out with lupus (or lupus-related illnesses) and who might have some questions about what your lab tests are measuring, what your doctors might be looking for or maybe even give you a sense of ownership in how your treatment/management is carried out by knowing more about what is going on.

This will also help those on the ‘outside’ - friends and family - who are wondering  ” If you can’t see lupus, how in the world does a person know they have it?”  There isn’t always a clear answer and there are plenty of times that the tests will be inconclusive or off.  By knowing more about the tests, though, others will be able to learn more about what you have to go through as you learn about living your life and lupus.

Wishing you all an enjoyable, pain-free, peaceful and long-lasting weekend of fun - even if that does include napping~      

There are several voices out there shouting their frustration over the fatigue involved with having lupus.  In fact, any illness is going to bring on fatigue just from the body struggling to find balance and from the dozens of different medications, chemicals, food and other substances we pump into ourselves.

For those new to lupus or just new to the symptom of fatigue, feeling constantly tired IS frustrating because you want to do something or your mind might tell you that you should be doing something, but your body is definitely telling you “You’re not doing anything!”

In case you haven’t read it yet, my all-time favorite contributor to Oprah Magazine is Martha Beck and in this month’s issue (October 2008), she writes an article entitled “Urgent! Urgent! (Or is it?)”  (pg. 81-84).  She illustrates the difference between what she refers to as “’Must-do-this-minute’ time killers” and the “’I’ve always wanted to…’soul satisfiers”.

She reviews a 4-quadrant chart that is based on Dr. Steven R. Covey’s  time management expertise and was proposed by the late Randy Pausch.  As a means of getting to those tasks that we feel we need to accomplish during our days, weeks, months and general lifetimes, a chart can be a visual tool that might help send home the message to ourselves to ask “How important/ urgent is it….really?”

Through sheer trial and error, we develop a sense of how much energy we have each day and how much we will anticipate expending as the day progresses.  There aren’t any specific measurements or predictions that can determine whether or not your ’sense’ will be accurate or way off (enter: frustration).  Especially for those of you who are younger and/or are in the midst of raising small children, you know that energy matters.  If you can’t keep up with your peers or your tots, then you might find yourself lagging behind eating their dust.

Martha encourages using this quadrant chart as a way of taking stock in what you are telling yourself and to help break away from those expectations that might be squashing who you are deep down.  The four quadrants that Covey identifies are :

• Quadrant I -    “Important, Urgent”
• Quadrant II -   ”Important, Not Urgent”
• Quadrant III -  “Urgent, Not Important”
• Quadrant IV – “Not important, Not Urgent”

 (Source:  Oprah Magazine, Oct 2008, pg. 82)

According to Covey, we spend a great deal of time focusing on Quadrant III and miss out on time in Quadrant II – which is not good, especially for those of us who are dealing with illness.  Time in the second quadrant is geared to “replenish” ourselves on all levels and is vital to not only manage lupus, but it also gives us control back so that we can determine how we want to spend our time.

I encourage you to read the article – she’s a great writer – and take a minute to try the exercise.  If you aren’t keen on charts or homework assignments, then as you go through your day adding to the self-imposed  ”to-do”  list in your head,  simply do a short-cut version of this exercise:

Thought pops into your head – you then ask yourself this:

“How important / urgent is it….really?” …  then consciously move to Quadrant II.

(you probably needed to be there, anyway).

(For another quick exercise along the same theme, also visit the MLWT bulletin board post “From the tips of our tongues….” in the Blog Chat thread of The Hub)  

My daughter informed me a few days ago of her photography class assignment.  It is a b&w portrait on a topic of her choice and she chose it to be lupus, thinking that the ‘official’ lupus awareness month was still October.  Although it has been changed by the LFA, I told her that I feel its every month for many and encouraged her to do it anyway.

So, she has asked me to come up with words that could be scribbled on a backdrop of butcher paper that I think reflects the lupus experience .  The thing is, its my experience with lupus and I am a little nervous in potentially representing an experience of many people knowing that it is so subjective.

This is why I started this MLWT network - I know what my experience is and how I view handling it.  However, I also know that I am very team-oriented in handling things that I want or need to do…exercising with someone else is always more motivating.  Trying something new is always more fun with someone else.  Feeling worried about my health always lessens when I see that someone else went through it and turned out okay.  Scrambling to find a resource or short cut is always better when someone is kind enough to give their suggestions.  Although I am generally a private person, which makes blogging and going public with this project very challenging for me, the independent streak in me is what gets me out of the bed every morning, get the things I know I have to do accomplished and is what made me make the jump into starting MLWT.

My Life Works Today is not to be “Maria’s Dog and Pony Show“ .  The foundation of this project is to act as an Oregon sounding board for those around us to check in, learn from and participate in efforts to encourage more research, strengthen employment options for those with chronic illness and get involved in health care policy support.  I’ve already mentioned that MLWT hears from all over this country and the world asking about “what is going on in Oregon?”.  You can imagine the emails I send back, acting as a coordinator of all that is going on with us and our challenging/successful/ [insert word of your choice] lives ~ they are very general and PR-focused.  I hear and read from other bloggers about their frustrations in not receiving comments on their blogs from those they are trying to reach out to, but I have never really  worried too much about it myself.  I lurk, I’ll admit it. So why should I feel resentment towards others who feel better doing the same thing?

I am quite certain that I have either made a fool of myself or made someone question my reasoning more than once.  As is always the option for any blog comment, I could always choose to list myself as ‘anonymous’, but how public is sitting behind the screen anyway?  I live in a country where, last I checked, I can stand up for something I believe in and only get stoned with rocks thrown from people who probably live in glass houses themselves one way or another.  At least I put something out there and I hear a lot more support than I do criticism.   I’m going to keep trying to improve my understanding of living and writing about it with every attempt I make.

This is what brings me back to my daughter’s request.

I know the words I will write and I know that it will be subjective.  I also know that I will miss words that perhaps others think I should have included, because it better reflects their experience.  Of course that is true, but just as my  telepathic abilities have their limitations, so, too, are the abilities of the LFA, SLE Foundation, research and medical organizations, the media ranging from Oprah to The Oregonian, your friends and family…etc.  We who are out here looking to learn from you about lupus can only guess to what you really need, want, or experience.  I think it needs to be said that as independent as we might think we are in going through this, we’re fooling ourselves if we really do see ourselves as alone.  We rely on our employers.  We rely on our government.  We rely on the family we try not to burden.  We rely on research to actually come up with the pill to make us better.  We rely on the disability program supported by the tax payers who keep feeding it.  We actually do rely on many of these people and more…and we’re forcing them to work way too hard at guessing about who we are or what we need- it only leads them to not try for very long.  If we don’t offer them anything, why should they offer anything in return?  We want our privacy, but feel frustrated when our employers, doctors, family, friends, teachers, neighbors,…make us feel like we’re not pulling our weight.  We choose the facade of ‘healthy’ and kill ourselves in the process of keeping it up.

You’ll notice I’m using the collective “WE“.  I’m part of the problem, too, and MLWT is my attempt at trying to be a part of the solution.  I now post comments on blogs, email writers to thank them for their contributions or clarify where I think they strayed.  I participate in social networking sites that, on the surface, felt a little like feeding my ego.  I openly talk to people in public if, but most often its usually when, the subject of illness comes up.  Finally,  I was at the lupus walk for the first time this year.  I’ve realized that this is my lupus and, as I learn something new everyday about how much I can create this experience to be, it is ultimately up to me to make it applicable to this world.  I want to live my life in a way that I can look back on it and say it mattered to me and those I shared it with, even if it did involve lupus.

 I don’t have all the answers - I don’t even know what all the questions are. 

I do know of one question on many people’s minds out there and they are looking for it to be answered by someone who knows:

“Oregon, what is lupus?”

       There have been several people in my network of friends who have been hit recently with flares or facing new health hurdles.  I am also in the middle of a difficult situation with two people who are good friends individually, but make a lousy couple together.  Both of theses situations are similar in their grieving and negotiation stages  - which places me in the uncomfortable position of not knowing what I can say to them that can make things better, because really, that’s what I feel the need to do. 

       Who hasn’t been either at the delivery or receiving end of the suggestion “Let’s just be friends.” We all know its code, but it just seems like the nicer option over “Get lost“.  The couple I mentioned previously are separated for the umpteenth time primarily because she spends his money and he keeps claiming to never know about it.  They are so intertwined and voraciously feed off each others’ misunderstandings that their fights inevitably define and maintain their doomed relationship. 

       Can couples just be friends when they have grown dependent on a history of pulling the rug out from under the other in order to stay together ?  Personally, I believe this couple are being foolish - they do relatively well when they live apart and it seems elementary to me in what they need to do:  divorce. Define their relationship so that their individual assets can remain their personal choices, live separately, cover their own responsibilities and continue seeing each other or ‘date’ -  because they really do want to be together.  Not the most moral or maybe healthy game plan emotionally for some, but fiscally and behaviorally, I think it would work. 

       Do you see how living with lupus is kind of like this situation?  Can we just be friends with our bodies after having them fail us time after time?  Would this same game plan work for us knowing how dependent we are on our bodies (obviously) yet needing to make some sort of a separation because there are those days when ”it isn’t working out “?  I think it might.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

       We invest into ourselves - we have to in order to be functioning, happy, socially  ‘adjusted’ (whatever that means) persons.  It is important in our human development that we come to some understanding and cooperative trust with our physical self so that we can thrive.  What happens when that relationship begins to break down, hurt, divide and betray us?  Unlike a partner, spouse, or significant other, the depth of this type of dilemma is much deeper and has fewer options - we have to stay ‘together’ and work it out.  Perhaps that is what makes it so difficult to deal with.  Like an ex- that just won’t let go, our bodies are with us and we just have to figure out how to gain some distance using the sweeter options without doing further damage using blunt emotional force on ourselves.

       If we consider our immune system as a partner - sharing the same space physically, but redefining the relationship on those difficult days - would that help us get through the flares and over the hurdles with a stronger sense of independence?  Can we tell our immune system something like this on those days where we’ve hit our breaking point?:

 ” Dear [ name of choice ],

      We have been together for awhile now and it has been the best thing I’ve ever known.  I know we’ve had our ups and downs, but there have been so many more ups that I will always [ emphasis added ]  treasure.  I’ve noticed a change in us, though, and can’t help but see how stressed out you are.  I guess I’m not real happy with how things are either.  I think we try, but we just can’t seem to figure out what’s wrong. 

      I know we’re both dealing with a lot of stuff right now, so I’ve been thinking…I don’t feel like I’m being fair to you or us because of where I’m at today and that isn’t helping us.  I think I need to take some time and clear my head.  I have to do this one my own and you can’t really help me.  You’ve tried to help and I love you for it, but it’s me, not you.  I do care about you - and love you - but I think it would be better for us both if we were just friends for today…you deserve so much more than what I can offer you right now.”  

I really do care about you and wish you the best always.

Love,

[ Your name ]  “

       Our relationships take a lot of investment to keep them healthy.  When things go wrong, maybe taking an emotional ‘time out’ and creating space is what we need to do.  Our immune systems mean well - they’re just doing the best job they can, even if it is doing us more harm.  In order for us to create a friendship with our systems, though, maybe we need to try focusing on what is truly important,  no matter how much anger, resentment or frustration we harbor.  What would happen if we sincerely acknowledged to our system that we understand it is doing what it thinks is right, but it needs to ease up and give us some room.  Friendship has its ups and downs no matter what and living with lupus (or chronic illness in general) is no different.  There is pain involved - physical and emotional - in all relationships.  We need to work the hardships using as many tools, resources and support we can in order to survive the experience. Most importantly, we have to see the relationship important enough to keep trying and recognize our needs to step away when it gets too hard.

       It’s time to take our share of the assets, take on our responsibilities for our own choices in caring for ourselves and see our systems as the buddy to share our days with because we really do  care about them.  Before you jump to a conclusion of “oh, brother” ~ consider for a moment this thought:

Today, we are still waiting for science to provide us a cure for lupus.  Until that cure is here, we still have to figure out how to live within our bodies.  Wouldn’t you rather spend that waiting time practicing how to “ just be friends ” ? 

I just want to follow up on the lupus walk this past weekend and send a big thank you to all who contributed, participated, coordinated and made having lupus a little more visible to the Portland community.  Although the numbers are still being crunched, you can go to the LFA - Pacific NW Chapter Firstgiving page (LFA Pacific NW Chapter) to check out totals and see the great work by individuals and teams.  I believe the online fundraising is almost $20,000 as of today’s date. 

Knowing that some people with lupus prefer to remain ‘anonymous’, I didn’t take pictures nor will I share them here.  I will, however, be posting a couple pics of our team on my/MLWT’s Facebook page since they were okay with it.  I do understand both sides of the lupus sword - wanting to be seen, but not wanting to be seen as sick.  In fact, this was my first year to join in even though I’ve lived with lupus for over a decade - I was way over due.  Despite the fact that we had wonderful weather this year for the walk, we did have fewer participants (I heard it was about 250).  We aren’t complaining, but there was some confusion as to why that would be so.  I think I know why I almost didn’t. 

I openly admit that if I had a day to spend doing whatever I wanted to or needed to, I was feeling relatively fine and there was good weather, thinking about lupus wouldn’t top my list.  Even though this blog and program has to do with lupus, in the MLWT tagline is “A Living, Learning and Lupus Network” (on the main website in progress).   We made certain that the point of living with illness is:

•  about living first and foremost
•  we should always be learning about the world around us and our place in it, and
•  finally, in order to live successfully with lupus, you have to acknowledge it as a part of who you are. 

After years of excuses and refusals in taking part in the LFA walks and not wanting to see lupus as that present in my days, I finally went this year (granted I didn’t walk the trail, just walked around exercising my gums and hanging out with those who stayed) .  I figured that I owe it to my friends, peers and myself to take one day and be present for those who aren’t able to be or never feel they are. 

Today, I’m reclining on the sofa with what I can only imagine battery acid being dumped down my trachea and esophagus would feel like.  Not because of the walk, but because I have become incredibly stressed, am not sleeping well (probably because of it) and have not been taking good care of myself by cutting a lot of corners.  What bothers me about it isn’t that I’m not feeling well, but because I brought it on myself.  This weekend there were some people either there or people there on their behalf, who suffer greatly.  I am ashamed that I routinely squander something as valuable as decent health when there are those who aren’t able to do much of anything.  I am clearly not living the way I need to or being respectful to those with no choice.

What I heard from others who were there on Saturday’s walk:  “I had a rough patch, but I am doing okay now.”  “I’m hanging in there the best I can and have had a great summer“.  “I went to Idaho to visit my grandchildren and had a wonderful time“.    No self-pity or anger, only honest reflection on the things in life that made them feel good even when their bodies didn’t.

This weekend wasn’t the ‘lupus parade’, ‘pity party’ or downer session that I have heard from those who don’t go.  There are several different kinds of support we all need - ill or not - and if you ever thought that this annual walk was only about the emotions of illness, you would’ve been pleasantly surprised.

I encourage those of you with lupus, lupus-related illnesses or on behalf of someone you know with them to strongly consider taking part in next year’s walk (or just donating time, sponsorship, raffle prizes or cash).  Doing so will do wonders in encouraging more of the hope that this community shared last weekend.  If wearing the themed hats bug you, they’re completely optional.  The point is that the funds raised will offer some educational opportunities here in Portland during 2009 and will go towards trying to create more awareness in our area so that research and medical advancement/treatments will make the trek and follow our Pacific NW Trail out here to all of us.

All the talk about the crash-n-burn economy has led to the recent demise of WaMu and the run on the bank activities that will surely continue to happen for some time.  Granted, the creative home financing and mismanagement are the central indicators that this bank has been in trouble for awhile and not taking heed to all of the signs throughout the finance industry is giving us all a good lesson in the value of checks and balances.

However, this being a health and lupus-related blog (not to mention I do my own version of creative financing thus making me a hypocrite), I wish to address a different banking system that is in some trouble.

I have a dear friend, who is mentioned in our bulletin boards (“The Attic” in the MLWT Community Forum).  I met Darese during my thesis research back in 2004, who generously contributed in an interview regarding lupus support group participation.  She has suffered through countless procedures, medications, health and financial crises, personal and physical roadblocks centered around her kidneys failing and struggling to remain on the transplant list – yet amazingly remains the most hopeful and endearing person I know.  Now, I’m not saying I don’t see the occasional human being underneath all the patience and laughter – its there and I’d be very concerned it I didn’t see it from time to time knowing what this gal goes through.  She inspires me and keeps me in check, sometimes reminding me of how careless I am being with my own care.  You know the saying, you never really appreciate something until it’s gone…or something like that.

I recently discovered, through the blogging grapevine, a blog written by a gal who is going through a kidney transplant process herself and I could never do her justice by summarizing it (Sjogrens & Me).  Although Vicky lives with Sjogrens (as does my mom), I’m encouraging those of you who know someone –and particularly those of you who have kidney involvement with your lupus – to walk with this gal in her moccasins.  As difficult as it is for me, I have been very aware that this is my 10^th year since my diagnosis –which research indicates is about the time those with kidney-involved lupus may need to face dialysis and transplantation. Knowing Darese, and keeping up with the research, forces me to do something - a wake up call before its too late. 

Reviewing the study on the CDC website “Health, United States, 2007” :

“Although the majority of the costs of kidney transplantation are paid by Medicare’s End-Stage Renal Disease program or by private insurance, the ability to pay for transplantation

does not ensure access to a kidney. The supply of available and donor-recipient compatible kidneys has not kept pace with demand, and the percentage of patients who remain on

the active waiting list for multiple years is increasing in large part because of lack of availability of organs.”  (pg. 82)

We are doing our own ‘run on the bank’ if we assume that there will be a kidney available when, or if, we need it.  The only way to ensure a stable ‘banking’ system is to keep the checks-n-balances on task through management, investment, ensuring access and remaining true to the community it serves.  No one can afford to be greedy and we all need to do our part to keep things healthy.

Darese is lucky in that she has a brother who is offering her the life saving organ she needs, but there are so many others who are not so lucky and the numbers are skyrocketing for all races.  Take good care of yourselves, learn more about organ donation (Donate Life NW)  and understand that even though we may never need a transplant, there are so many others who do. 

The economic upheaval that this country is experiencing right now was caused by short-term thinking and isolated gain for the few at the expense of the many.  Don’t make the same mistakes with the true potential of yourself and your fellow Oregonians.

(Web Source: National Center for Health Statistics

Health, United States, 2007, pg. 82

With Chartbook on Trends in the Health of Americans

Hyattsville, MD: 2007)

___________________________________________________________________________________________

Darese, Kathy Casey from the PNW LFA Chapter and I will be at the Mad Hatter Walk and Roll Lupus Fundraiser tomorrow at Willamette Park 9AM~ Hope to see you there!

I’ve spent the last month or so trying to distribute the pamphlets for the upcoming lupus Mad Hatter Walk and Roll here in Portland scheduled for this Saturday, September 27th at Willamette Park beginning 9 a.m.  I’ve been to community groups, local businesses, neighborhood centers, schools and churches, public resources like libraries, senior centers, and Chambers of Commerce…I know I haven’t hit everyone or every corner, but I did what I could.  To summarize what my efforts these past few weeks have been like, I offer the following phrase:  “I don’t know.”

“May we place these pamphlets here in your store/ office/ front desk/ resource counter/ bulletin board/etc…?”

“I don’t know…”

“If you have lupus or know someone with it, why have you or your family/friends not participated in the lupus walks over the years?”

“I don’t know.”

“What would you like to see/ hear/ learn/ have here in the Portland area that might be of assistance to you in living with lupus?” 

“I don’t know.”

“Why do you think we don’t hear more about lupus and lupus-related activities/resources here in the Portland-metro media?”

“I don’t know.”

“What do you think your daughter (who has lupus) needs help with the most that you would like to be able to offer her?”

“I don’t know.”

Are you following me, here?   Honestly, I don’t know.

I don’t know why my own daughter asked me to give her money so she could participate in the Race for the Cure, but refuses to join me this Saturday for the lupus walk.  Perhaps I spent too much time questioning my own place in lupus advocacy.

I don’t know why I received countless smiling nods while I did my spiel about the lupus walk, heard several mention that they knew someone with lupus, then was told that they “couldn’t” or wouldn’t place the pamphlets out for their patrons/patients/clients to consider participating in.

I don’t know if the reason those individuals who participate in the Race for the Cure, yet refuse to support lupus activities is in their assumption that breast cancer is fixable and lupus isn’t.

I don’t know why those with cancer feel like they are a part of a group/community/family/cause and those with lupus feel publicly ashamed.  Why do those with cancer seem to feel like they are larger than life and those with lupus seem to act as if life is too large for them?

What I do know is that I, personally, am in awe of what breast cancer advocacy has grown to become - absolutely stunning, clever and strong - because being present is the only way to be recognized.  Words, pictures, money, product - all of that comes from the actions of everybody buying, listening, watching, donating and participating.  It didn’t happen overnight and it didn’t happen among a group of people saying - “I don’t know“. 

I REALLY want to know:

• …what it will take for me personally (and those with lupus collectively) to not feel embarrassed about living ‘the best they can’?
• …why friends, family and the community as a whole still don’t take seriously an illness that affects more than 1.5 million Americans - including a growing number of our military personnel and veterans?
• …why it is so difficult for people who know someone with lupus to take a stand on their behalf?
• …why lupus is receiving a great deal of interest from the U.S. Department of Defense (PRMRP) yet doesn’t get any shout outs from the Portland-Metro media for an ANNUAL lupus fundraising walk?

Most importantly,  I want to know why it is up to those who have a hard enough time making it through their days as an employee, parent, neighbor, teacher, soldier, consumer, nurse, citizen, patient, student, child, taxpayer, grandparent, …to do all the leg work in just getting someone to say ~

“I want to know” .

(On the Road to A Cure offers a list of lupus walks coming to several areas within the next couple of days.  If you don’t feel compelled to take part in the actual walk, please strongly consider contributing a little towards future research, local educational opportunities, offering your time and energy next year in helping get the word out, make a tax-deductable donation or whatever you can do that will benefit someone you know who has lupus.  It honestly doesn’t take much to make a difference~ but it will take a community to change that “I don’t…” to an “I want to know “)