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!

I spent a great deal of time in 2009 putting together the new blog set up and managing the social networks to find people out there and learn from them as much as possible. All that time behind the desk, however, took time away from trying to build this project into that strong support network hub for those living right here in the Pacific Northwest.  Of course, the goal for this project isn’t to imply expertise regarding lupus or other lupus-related illnesses and conditions,  as much as it is to offer a connection point for those of us looking for a variety of local resources when they want them.  Those resources need to be created and it takes hitting the pavement as well as the computer keys.  So, I stepped up the face-to-face work that I’ve not made enough time for this year.

Since this is the holiday season, getting those cards sent and stopping by to catch up with some colleagues was not only fun, but energizing.  I’m looking forward to the New Year with plenty of enthusiasm.  New one-to-one services, our Target Practice crew get-togethers, community forums and professional collaborations with health representatives will be topping our news for 2010.  I will be stopping by the blog more regularly with topics in the areas of interest that we hear from you about most often.  I will be putting myself out there for my New Year’s goal of regaining some lost footing in my health.  We will be starting up the book chats again in January and we are still taking last minute suggestions!  A lot to look forward to begin focusing in on our mission with this project~

“…to inspire individuals who are living with all forms of lupus and lupus-related illnesses by being a strong resource of opportunities reflecting the potential and well-being of our Oregon and SW Washington communities.” 

Now that the website is on board (and still evolving with new details) and we have flyers out in the community, it’s time to get back to focusing on those strong resources, in reflecting the potential and well-being of those living here in the Pacific Northwest.  Back to targeting the living and learning areas in our lives that happen to include lupus in varying degrees.  It isn’t only about having lupus — it’s about living with it well and on our own terms.

I want to personally wish everyone an amazing holiday season and a year of limitless possibilities in health, opportunity and enjoyment. 

We will be checking in with you very soon~

This week is National Handwashing Week .

I fall somewhere between “Extra precautions are a good idea” and “What’s all the hysteria really about?! ” when it comes to exposing my already-accelerated immune system to all that’s out there these days.  This middle ground applies to many things in my life, however, and not just health management, respecting the personal welfare of those around me or how to deal with the falling sky.

I’m taking this hand washing week more figuratively, rather than in the intended common-sense approach.  Granted, as basic as it sounds and as silly as it may seem to have to celebrate a week of reminding us about something we’ve heard since we can remember, there are many people who don’t fully realize how important it is to do it.  So, here’s my shout out –reflect on the many things you touch during your day  and consider managing how much nasty stuff you pick up and spread to yourself  (and others.) 

This need to reflect on the picking up and spreading of unwanted ‘residue’ has me thinking about issues, challenges, inconveniences and misunderstandings that I know I’m harboring within my self and it is affecting my overall health.  First off, there is a pending doom lurking to strike in January, when all the yakking about New Year’s Resolutions begin.  There is the usual laughable budget to work with this year ~ the worst so far.  There is the holiday avoidance dance…sidestepping the real issue, problem or hurt that is politely kept silent, yet remains deadly to the relationships it infects for yet another year.  There is the reflection on the past year and reviewing of the “to do” or “wish” lists that were written last January.  Or, the revised business plans that suggest promise and opportunity…that are still getting the kinks worked out, due to a rougher road than originally anticipated.  Then, there is the realization, at least for me, that my oldest turns 18 years old in January, is finalizing her plans for college and is still five years old in my mind, no matter how much she proves to me otherwise. 

As I head into what December represents for me this year, I can’t help but just want to wash my hands of all of it.  I feel like I have dug myself into a hole so deep and full of foam squares that, with even the slightest movement I make to get out, sends me right back in with a few more projects added to my list of things to dread.  I can’t seem to quiet my mind in coming up with more ideas long enough to see some progress on the many others half-baked.  I see the promise and opportunity of where I want to be, but it’s the road and energy required of me in getting there that gets lost in an immobilizing fog.  

This year, it will be primarily a homemade gift-giving season and I’ m excited about it, despite all the time and energy it will be taking from me tackling my ugly to-do list.  However, just as this week’s message about hand washing accentuates “empowering individuals to educate and help protect”, I recognize that I am going to have to do a little of the empowering with myself in order to make this an emotionally and professionally healthier season, because that is really what I want most for Christmas.

I’m offering up a list of things that I am going to do to wash my hands of unwanted debris in order to accomplish as many of those goals I set for 2009 as I can, before 2010 arrives.  I will follow these guidelines in order to cleanse the potentially toxic or virally- threatening obstacles that seem to be in my way of making it to January 1^st, 2010 in a much better place than I am today.

This December, …

I will cleanse the need for perfection.

I will blow any unhelpful or demeaning internal comments about myself into a tissue and toss it away, followed by a cleansing “Gesundheit!”

I will recognize how many things, people and efforts I touch upon throughout my day and treat each one with more honor and respect (rather than fear or ambivalence.)

I will remember to make a strong dose of creative thinking or expression every day, preferably with chocolate.

I will keep on hand a smile, a sense of gratitude and a few laughs to share…just in case I need it.

 I will rest my “shoulds” and worries frequently, so I don’t wear myself down. 

And, most importantly, I will remind myself that, as the dramatist Tom Stoppard once wrote: 

“A healthy attitude is contagious, but don’t wait to catch it from others.  Be a carrier.”

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!

Ideally, my hopes were to come up with a post about traveling with chronic illness or even put up some type of carnival-style post naming bloggers who are out there kicking up some dust of their own traveling. 

Realistically, life doesn’t seem to work that way for me lately.  If it isn’t the internet or computer giving me grief, it’s all of those loose ends smacking me in the face while the winds of indecision and panic swirl around me in my efforts to organize preparations.

Since it is now 2:22 am and I have to leave for the airport by 9:30 am, I’m thinking I am going to let my personal expectations slip  a little - afterall, I am practically on vacation.  I want to mention a great post on traveling preparation that a friend, Jo-Anne posted  “Rheumatoid Arthritis: 10 Tips for Travel” on her blog Living Rheum.com. It covers some great stuff and more thoroughly than I would have, certainly.   She writes from living with R.A., but all easily applies to us with lupus and other related illnesses. 

A few other good bloggers have mentioned traveling, too, such as:

Jocelyn Tomkinson, as featured on ChronicBabe.com   “DisAdventure! Advice for World Travelers” – a great post particularly for the younger chronic illness (CI) set.

Barbara Kivowitz  offers a nice , PNW-inspired post entitled My-Own-Private Idaho about how her decision to go river rafting with her husband gave her a true vacation from her pain and re-introduce her self with adventure.  This is a great post to learn more about the relationships with others (e.g. spouses and partners) and working on working it out together.

About.com hosts Karen Lee Richards with her article “Traveling with a Disability or Chronic Illness” that covers some good basics to also keep in mind.

Jeanne  authors the blog Chronic Healing and offers a post entitle “Fun For Healing” who doesn’t board the plane for any particular destination, but to simply encourage herself to become distracted with possibilities.

To finish this up, I had a couple of flashes of insight that startled me and I want to put out there – maybe to induce some dialogue when I get back in a couple of weeks:

1.   I can’t believe that I not only remembered all my meds, chopped them up and counted them out for the number of days…I actually wrote them down on a sticky note and put it into my wallet stating “Ich habe Lupus Nephritis – 1500 mg Cellcept, 20 mg Lisinopril (Generic for Accupril)” along with my doctors name, location and phone number.  Dang – I impress mahself.

2.   I understand now that I have to shift my perspectives on traveling.  It isn’t as vagabond as it used to be and realizing that actually made me a little sad today.  Packing made me feel old and boring.

 Do I have enough layers for the cold or sudden hot flash?  Do I really need to bring gloves even though the rain is coming down and I don’t want the Raynaud’s to get in the way?  Jewelry – is it time to think that a medical alert bracelet really does say it all?  Comfortable and practical shoes – wtf?! 

The spontaneity of journeys do get muted when our lives require constant awareness, but that doesn’t mean not to step on that trail.  I am not going on this trip to prove that I am still that 20-something who could withstand most anything – I’m going because I still can.  It may be different, but the road is still in my potentially-clotting blood needing to flow as free as possible.  Gotta’ heed the call. 

Okay – seriously…sleep and hydration is pretty important – as this latest article (posted on Reuters and written by Amy Norton) addresses, and gives me something more to worry about.

Thanks, Yahoo News…your timing in impeccable…

I’ll be back in a couple of weeks – please visit these links and all of the great people listed on our Resources page.  If you don’t find yourself there, send in a little intro here in the comments.  If you know of other greats out there deserving some recognition, please list them as well.  If you are inspired to write about your own travels and adventures, we would love to post them.  If we can’t always get out into this world, then there is something magical in bringing that world to each other and encourage the adventures. 

Be well and laugh often!

Maria

a) didn’t have lupus and all the emotional upheaval that the lack of control brings

b) exercised regularly so that the blood keeps flowing to my brain

c) didn’t have expert-level skills in responding to chaos, and

d) lived completely alone on a tropical island somewhere

Last Monday was the final session of the Living Well with Chronic Illness workshop I’ve been attending (See Working on Facing Change) .  We discussed dealing with our illnesses in the futures building on all of the topics we covered ranging from our emotions to being ill to specific actions we can do to make living with illness better.  This workshop definitely gave me a better perspective on some basic topics ranging from effective information sharing (communication) to evaluating my situation and goals (action planning). During this six-week review, I realized that I am completely unprepared (as is my family) if something were to suddenly happen to me (organizing medical, healthy living and emergency information).

Some of the tasks that I have added to my list of weekly action plans include learning more about:

Advance Directives

Organ Donation registration , and

DNR’s (Do Not Resuscitate orders)

I’m also in the process of creating or seeking templates for the following:

An Emergency Health Information card to carry with me (the format doesn’t matter as much as  the information)

A Health Team Roster (Contact List) to share with family and friends including roles

A Medical/Health Reference binder for medications, dosages, allergies, and specific illness-related topics (such as sun and fluorescent lighting info for flare management, minimizing dampness or cold temperatures to minimize raynaud’s, tracking symptoms and diet) to bring to my appointments

A Self-care wish list (things that help me feel better, laugh or generally make me happy if I can’t communicate – either because of health or if I’m just not up to relying on others’ help* )  

*Ideally, the items on this sheet will offer my loved ones ideas on how they can help when they see me hurt

Sounds like a lot of work – and it is.  However, as I struggle to maintain my independence and not burden my friends or family, I need to insure that independence by taking the time to define my life now (and in the future) -it is my responsibility.  Another flexed muscle for healthier self-determination. 

What would you recommend?  I know there are a lot of you out there writing about the importance of this stuff, too.  Please comment here listing any local and national/international resources, recommend websites, offer up your blog post links, and words of wisdom so that we can – as a community – offer these important reminders to others living with, or even those living without, illness.  

I’m going to do a shout out to a few blogging buddies asking them to add their two cents and I encourage you readers to do the same with your friends. We need to do what we can to take care of ourselves and our friends – simply by initiating the conversation.

Hey, Leslie!

Hey, Sara!

Hey, Julia!

One last thing, here is a link that I came across on ABC news the other day that covers some of the key points the local living well workshops do – good advice and also a great kick in the tail to help me get busy on these necessary homework assignments. 

Looking forward to hearing – and learning - from you!

As someone who has had lupus for over a decade, I feel that I have lived successfully with it so far- meaning I’ve been able to manage the illness from progressing further in my kidneys, have been pain-free for about fours years and have remained able to contribute in supporting my family.  I also know, as a veteran who has witnessed and heard from others how easily our lupus can change, that I need to get off of my self-appointed throne and get more serious about keeping my progress in lupus management relevant.  It is good for me to participate in reviewing the routine information and sharing it with other participants through this workshop- because the reality is…I’m not paying attention to any of it on my own.  If I knew all there was to know about self-care and lupus, then why aren’t I following through with any of it?

This year will be one for me to address my attitudes about many things and one of them is recognizing the difference between exercise for weight management and exercise for my health.  Being thin for the most part, I have hit an age and created a lifestyle where all that glorious work that I put into my youth is now depleted.  I can no longer benefit from my athletic and outdoor adventures, which were both a means of exercise for me without me really thinking about it or being conscious of it.  I now need to start addressing the fact that my lack of exercise has aged me more than the years themselves have and if I don’t start becoming more conscious of that, I’ll really be in trouble very soon.

So, with February being Heart Awareness Month , I’ve decided red is the color I’m focusing on this year.  Not just because of my age or the fact that I’ve become a sloth, but also because individuals with lupus are in a higher risk bracket for developing heart-related problems.  I’ve put a huge widget on the site to serve as a reminder for all of us to take notice of our heart health (actually, I couldn’t figure out how to shrink it, but the other reason works better).

Here are some health information links that address heart disease and lupus for all of us to keep in mind during this heart-focused month.

Miscellaneous articles and sites on lupus and heart disease connection

Medical News Today  

Lupus Research Institute  

Lupus Foundation of America    Heart Disease Risks  and Lupus Information about Heart Involvement

For Tools and Articles on Heart Health, here is great problem-focused coping resource to check out through the American Heart Association including: 

Heart Attack/Coronary Heart Disease Risk Assessment

Warning Signs (for both men and women)

Tracking and Log Tools

An additional tracking tool for goals in starting up walking is offered at Womenshealth.org

A good layman source for recipes and general information to use in getting more heart healthy:  Better Homes and Gardens Heart Healthy Living – (note:  there will be pop ups).  Obviously, check out the more medically-based sites like National Women’s Health Resource Center  and WebMD

For those of you who are more emotion-focused in your coping, here is a link to a non-profit that offers inspirational and motivational stories about taking care of our hearts: Womenheart.org  .   You can also find many more people sharing their experiences and suggestions on several autoimmune- or lupus-related websites, blogs and social networking sites.

Wishing all of you some peace in your hearts~ Be Well, everyone

——————————————————–

Be sure to check out the MLWT bulletin boards “Blog Chat” forum for follow-ups on the workshop progress (Tuality Workshop thread).  I will also be adding more local information, resources and discussion opportunities in this forum following the blog posts this month.

How can we take on something as rigorous as college when there are days when we can’t even sit without pain or think due to the extreme fatigue that comes and goes?

If I can’t hold a regular 9-5 job, is college going to offer me more opportunity or send me straight into a mother of all flares?

Will I fit in or have any support if I am struggling – or will I be shunned because I look well, but act like I want constant sympathy?

Today, I enjoyed a phone conversation with Betsy Pacheco, who is the Coordinator for the Disability Resource Center and Tutoring Program at Clackamas Community College .  She graciously provided answers to some of these questions regarding college educational support opportunities for those facing autoimmune diseases. 

According to their website, The Disability Resource Center offers “...support [for] student success by creating full access and providing appropriate accommodation for all students with disabilities who have the ability to benefit from the college experience. “ 

The definition of “disability’ applies to any situation that is covered under the Americans With Disabilities Act or ADA.  Established in 1990 to “…provide protection from discrimination for individuals on the basis of disability.” (Source:  CCC Disability Resource Center website), lupus falls under the protection in general due to some of the symptoms that are exhibited.  However, since the ADA does not provide a list of diseases that are covered, that also means that there is some flexibility in interpretation and can potentially cause some problems when needing extra consideration in settings such as education or employment.

When facing extra challenges and uncertainty about whether employment or school are options for us, this vague ‘interpretation’ guideline can sometimes lead us to not even try to pursue our interests or jobs.

At CCC, the Disabilities Resource Center (DRC) will offer you student-focused advocacy in determining your physical classroom needs.  In discussing your situation with the Center’s staff, together you can create some ideas for accommodations that can then be addressed to your professors (by you) utilizing their expert assistance.  Such options may include flexibility in class arrival times, occasional opportunities to stand up and stretch, a different chair to sit in or other means necessary to accommodate your learning that can be implemented within the classroom. They also provide some classes in managing life as a student facing additional challenges and by giving you some helpful tools for life outside the classroom.

Their services are not limited to only those students who enroll in their program.  If considering yourself as “disabled” is uncomfortable for you, you are still able to meet with them and discuss any challenges you are facing that might be threatening your continuation.  She estimates that the majority of students participating in the Resource Center’s services do not have specific physical challenges.  She also understands how chronic illnesses, such as lupus, often present barriers even though the causes might be ‘invisible’ and fluctuate in severity.  In fact, she has been able to assist some students living with illnesses like arthritis and fibromyalgia in continuing on to successfully complete their degrees.

The DRC offers coaching in ways you can speak with your professors about why you’re are struggling- without disclosing personal information about your illness (something you are not legally bound to do).  If, for some reason, your professors do need some additional encouragement in meeting you part way, the resource center will offer them a formal accommodation letter explaining the ADA requirements and present your requests for consideration that you determine would be helpful in getting through your classes.

The Center’s goal is to advocate for you by focusing on your rights to accommodations in partnership with your instructors.  They are not able to alter the core essentials in your educational program nor do they offer mediation per se.  They do provide resources, support and encouragement for you to take charge of your own educational destiny. 

Ms. Pacheco stated that in the 10 years she has been working within community colleges (two of those years at CCC), it has rarely come to the point where a professor refused some type of accommodation and feels privileged to be working within such a supportive environment for their students.  If you would like more information or need further advocacy for your situation beyond what your school’s disability program can offer, she encourages every student living with illness or physical restrictions to visit or contact the Office For Civil Rights.

Our thanks to Ms. Pacheco for offering us some insight and encouragement to consider higher education and for her service to all the students who have benefited from her kind advocacy in helping us move beyond our health challenges.

If you’re at all wondering whether school is possible for you – and we hope our country’s new administration will value education – then give them a call at DRC or check out the student services programs at any other schools.

In today’s climate, we need all of the options we can get.

This year offers (and threatens) us all with some changes ahead.  If you are new to lupus, you will experience change in a different way and what used to automatically represent opportunity becomes something more difficult to embrace.  Change really is opportunity, but life experiences coat the very process, sometimes disguising appearances or altering how things occur leaving us feeling lost rather than empowered.

For our nation, we will begin to see changes in policies that we will or will not feel supportive of.  We will find that our ways of living will change in response to the dominos falling around us as we wait for them to be placed back into some sense of order.  We may have to change jobs, addresses, vacation plans, college choices, budgeting practices, and our expectations on how we wanted things to be by now.

For us with illness, we may find ourselves unemployed and/or without healthcare providers.  We may have to try new medications (those that are not designed for lupus) and will maybe experience new reactions – good or bad.  We may go through changes in how our lupus expresses itself and find out that what we used to rely on in helping those symptoms no longer works. We may have to change some of relationships with some people in our lives because they won’t or can’t meet us halfway in learning how to avoid the shrapnel exploding from our illness.  We might have to change our views of who we are, perhaps kicking and screaming the entire way, and have to prepare in looking into a mirror not knowing where this person came from or is going to.

The one thing about change that we can count on is that it happens – sometimes by our own hands and sometimes not.  It is not only an inevitable occurrence while breathing, but it is also a chance for us to learn more about and build the lives we choose to live.  If you want to get through it, then it’s important to create a stash of valuable tools.

I’m going to be breaking down some items that are recommended for anyone’s lupus tool box in the next few weeks.  I know the posting here can be sporadic, but let’s hang in there and by all means please contribute to what you will read here through suggestions, questions and recommendations. By participating, you will reinforce your own abilities to prepare for change and will also help others in their goals to do the same. If you feel that your action plan or tool box is looking a little sparse these days or the tread on your lupus-managing tires appears worn down, then maybe it’s time to seek some structure in your assessments. 

For us who have lupus-related conditions and live in Oregon and Vancouver, there is a health management program currently available offering workshops geared towards managing chronic illness that may help you stay on track with your 2009 goals, health or otherwise. 

Living Well With Chronic Conditions Workshops

These workshops are based on the Chronic Disease Self-Management Program developed by Stanford University’s Patient Education Research Center . Each session is designed to cover some of the basic elements in managing chronic illnesses in general and aren’t specific to lupus or lupus-related illnesses.  However, as we all know, lupus has a way of leading to symptoms of other illnesses either through disease progression or stemming from the meds that we take.

Some of the targets include working with your medical or health care teams, dealing with medications, coping and communication strategies, eating and exercise recommendations and so forth.

There are a number of workshops held throughout Oregon and Vancouver varying in costs, which are covered by some insurance plans.  Some programs also offer scholarships to participants who are not able to pay the fees.

In my attempt to face 2009 standing up, I will be attending the workshop starting this Monday, January 26th at Tuality Hospital in Hillsboro called Living Well With Chronic Conditions .  I’ll be writing about my experience going through the workshop process throughout these six weeks.

This year, I will be targeting resources that you can look into here locally as well as highlighting some blogs that can help you define how you plan on tackling the changes coming.  Not all will be lupus or health related – because we are more than just people with lupus.

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Community Note:

On Saturday, January 24th, I will be attending the WACIPI Tenth Annual Traditional Powwow  at PCC’s Sylvania Campus in partnership with the Sylvania Multicultural Center.  The admission is free, but there will be vendors and food.  Although this may not be the best place to meet and greet for lupus networking, I do hope you will still attend and support our local Native American businesses/community.