Even if you don’t live on the coast, what a great reason to go and escape this heat!

September 10-15, 2011

 Arthritis Road Show 

Serving the communities along the Oregon Coast

The Arthritis Foundation is bringing free resources to the communities of theOregonCoast!  Hear from rheumatology specialists, orthopedic surgeons, and get a free osteoporosis screening.

Program Dates and Locations

Saturday, 9/10           Astoria – Holiday Inn Express

Sunday, 9/11             Tillamook – Tillamook Bay Community College

Monday, 9/12             Newport – Oregon Coast Aquarium

Tuesday, 9/13            Yachats – Adobe Resort

Wednesday, 9/14       North Bend – North Bend Community Center

Thursday, 9/15           Gold Beach – Curry Public Library

Program Schedule:

6:00 pm  -  Registration & Resources

6:30 pm  -  Presentations and Q&A sessions

7:30 pm  -  Program Concludes

To RSVP, Please Contact:

Cynthia Bishop, OregonPrograms Coordinator

Phone:  (503) 245-5695  Toll Free:  1 (888) 845-5695

Email:  CBishop@arthritis.org

Sponsored by:

Pfizer

Amgen

rebound Orthopedics & Neurosurgery

Janssen

Abbott

Arthritis Foundation

Leslie over at her blog,Getting Closer to Myself, fills us in on her dissertation adventures coming up this July and August in her contribution “Traveling (Alone) With Lupus And Rheumatoid Arthritis”.  Already a veteran to the travel scene, she knows all-too-well the toll it takes on her both physically and emotionally.  Adding in a new medication to her repertoire this time around, Leslie reminds us all that when we are living with chronic illness, we are never truly traveling alone.

Hayzelle echoes the reminder that summer vacations are meant to relieve our stress, rather than bring on more.  One of Hayzell’s goals for this summer is to travel in comfort and not let chronic pain get in the way.  At her site, possibilism.org, she tells about what she has learned and gives 15 great tips for traveling with less pain in her post “15 Tips for Painless Travel” .

Kimberly Kaye has chosen to celebrate the wonderful certainties of her life ~ such as family fun ~ and set aside the worries of all the uncertainties she’s facing right now with her health.  Some traveling to Kentucky, some coastal excursions, and lots of photo opps.  The name of her blog says it all: learn.love.live and you can read her summer mantra in her submission “Summer Plans“.

For me, I may get to the coast more often this year, now that one of my friends has been offered the opportunity to enjoy ‘retirement’ a little early.  I plan on taking advantage of her wonderful offers to stay over in Astoria and maybe meandering my way to other coastal places I haven’t been to in years.  I have also agreed to take my girls by train to Seattle some time and will be hosting a visit from a good friend I haven’t seen in years.  Even though she will be doing the traveling up from California, we will both be taking part in traveling back in time as we attend our 30^th (yeah, we’re that old) high school reunion.

I think the biggest trip I have planned next summer, though, is straight down…but in a good way.

I have decided to commit to raising donations for an organization called Leap For Lupus .  Since 2004, this organization contributes 100% of the funds they raise to research to the University of Washington Division of Rheumatology , as well as take part in the annual fundraising walk put on by the Alliance for Lupus Research (ALR).  Valinda Mitchell’s enthusiasm for diving and advocacy has proven to be infectious enough for me to throw out all sense of reason and take my own leap of faith.  Beginning June 1^st, I will be hosting a donation button on the site here for people to consider the following proposal:

I am committing to raise $500, which is my goal, up to August 1st, 2012.  I figure that all I need to reach that goal is to receive $10 from 50 people, but rather than simply ask for the cash, I am offering an opportunity for people to celebrate themselves, or someone they know, on the jump.

I haven’t figured out the specific suit set-up yet , but I envision providing ‘space’ on my suit to transfer photos, bios, wishes and so forth of individuals living with lupus.  I know that I am very fortunate to be able to physically take this leap and my way of sharing the experience with the many wonderful people who share my lupus journey here on the ground would be to take them with me.  I initially wanted to offer video of the trip down…again, I’m working on the details…and, if I can get someone to help me figure things out, I see a YouTube video in our future.  What you will definitely receive is a pic of your transfer on the day of the jump and a certificate to commemorate the event.  Stop by Leap For Lupus and learn more about these great individuals.  I hope you will consider joining in on this leap of faith with me and helping further lupus research for all of us.

For those of you who wanted to take part in today’s PFAM, but couldn’t make the deadline, this post can easily be added to if you still want in.

I am pleased to introduce author and pain archeologist, Sue Ingebretson, as our guest for today.  You may already know her from her website Rebuilding Wellness and/or from her book, FibroWHYalgia . You can also find her on Twitter and Facebook.  She lives with Fibromyalgia and works diligently in creating self-care resources to address the many challenges (and oppportunities) living with fibro can present.

With today being a big day in building awareness for Fibromyalgia, I asked her for her thoughts on a pet peeve of mine, where we in the health and wellness arenas can sometimes fall into focusing so much on managing illness that we can actually derail building wellness.  Please welcome Sue and learn a little more about what she has to say about being your own best coach in pursuing healthful possibilities.

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

How Do YOU Manage Your Chronic Condition?

As a member of the FibroFix Team, I helped to create a free eBook that can be downloaded here. In this book, The Top 5 Health Mistakes YOU May Be Making Right Now! I listed one of the mistakes as this:

“Managing your illness rather than your wellness”

Do you see this as a problem for you?

In a nutshell, I pointed out that managers – or coaches — have a great effect on their teams based on their words. Most coaches uses inspirational language – phrases such as: See the finish line in your mind as you move forward. 

That makes sense, doesn’t it? Encouragements from others can really help us stay on track. It sharpens our focus and bolsters our motivation to reach our goals.  But what if the language from our coaches is negative? What if a coach said this to a member of his or her team: Make sure you don’t trip and fall like you did the last time.

How do you think a phrase like that would damage a person’s motivation, or worse, their self-worth?

The real problem is that we are often our own worst “coaches or managers” when it comes to life planning and setting positive goals for ourselves. A lifetime of experiences has taught us to think more negatively than positively. Many call this, “just being realistic.”

I don’t agree. Is it “realistic” to set intentions that may not ever come true? I know a lot of chronically ill people in my local area support group who think this way. They don’t commit to events or meetings because they might have a flare that day. They retrofit their homes, cars, workplaces with accommodations for future disability issues. They take pharmaceuticals that are intended for “the bad times” now so that if a crisis hits, they’re ready.

Is that realistic or pessimistic?

What if you turned that thinking around? Consider PLANNING for success and improved health. Coach yourself into positive thoughts such as:

My body is growing stronger every day

I see great improvement in my energy levels as I take care of myself 

Putting my self care needs FIRST, helps me to prioritize everything else

When it comes to self care and keeping a positive attitude, I’m often asked which comes first. The best thing is that it doesn’t matter! A positive attitude helps to motivate you to take care of yourself and taking care of yourself helps to foster a positive attitude. In all scenarios — YOU win! 

Try these basic and simple self care methods: 

• Move the body in a healthy way every day. Whether it’s walking, swimming, gardening, dancing, etc., moving your body each and every day is vital. Move within your own capabilities respecting any personal limited mobility issues. 

• Drink plenty of pure, clean water (that doesn’t mean water from the tap). 

• Include plenty of nutrient-dense, fresh veggies in your meals every day. 



• Breathe deeply – taking deep belly breaths – at any sign of negativity, anxiety, or worry.

• Create a bed-time routine of turning off TV’s, radios, etc. and write in a gratitude journal, read a good book, or take a warm bath. Whatever your routine is, make sure you stick to it and prepare yourself (mind and body) for a night of restful and restorative sleep. 



Applying just a few, simple self care activities into your daily life can have profound benefits! 

If you’re in the Midwest, The Fibromyalgia Coalition offers an amazing conference each year in May. Click on the 2011 Conference link for more details.  If you’d like an in-depth and personal educational series about healing from chronic illness (not just for those with fibro) that you can participate in from your own home, view the details of the FibroFix System here.

There’s always more to learn, so tune in to educational opportunities that meet your needs. Set your intentions for a positive and healthy future!

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

Sue’s book,  FibroWHYalgia will be our first MLWT Book group pick beginning this Fall.  Here is a little more about it: 

When Susan Ingebretson found her health spiraling out of control, she wanted to know why. Her tenacious research into the causes of chronic illness led her through a maze of traditional and nontraditional healing methods. Ingebretson eventually connected the dots and found wellness. FibroWHYalgia is a half diary/half tutorial guide that exposes the facts, fibs, and fairytales of failing health and offers practical solutions. Included are detailed descriptions for making nutritional, fitness, and stress-relieving lifestyle changes.

Susan Ingebretson invites anyone with chronic illness to come down from the spectator seats and participate in restored health.

More about Sue~ 

Ingebretson was featured in the March 2011 issue of FIRST for Women magazine and made several guest appearances on the nationally syndicated health TV program, Know the Cause! Her writing has appeared in the National Fibromyalgia Association (NFA) print magazine, FibromyalgiaAWARE, and the Fibromyalgia Coalition International’s magazine, Fibromyalgia Alternative News. Ingebretson is a contributing author to, The Gratitude Book Project: Celebrating 365 Days of Gratitude and the eBook Fibromyalgia Insider Secrets: Top 12 Experts. She has also authored many books for Playbooks, Inc., a children’s publisher of instructional classroom books. Her book, Fabulous Food Detectives, teaches students to read food labels and discern the difference between whole and packaged foods. 

Ingebretson posts news and encouragements geared to promote positive lifestyle changes and healthy living.

If you are living with lupus, or know someone who is, you will undoubtedly come across references to it live or via internet.  Over the last three years of MLWT, I have watched the presence of lupus grow to new heights and am grateful to the powerful impact the internet has given to so many voices.  Lupus is often considered an “invisible illness” due to its inconsistent symptoms, lack of clear diagnostic protocol and the diversity among those it touches.  Lupus and its primary symptoms of fatigue and roller coaster health affects leave much to be desired in a marketing perspective, but the explosion of patients through blogs, health networks, Facebook and Twitter make it clear that Lupus is no longer the invisible threat it once was.

Although I received a number of ‘hits’ on my post regarding Oregonians and their invisibility pertaining to lupus , you’ll notice the silence in the comments…again.  As the world opens up today on what living with lupus looks like, feels like, and how it challenges us, I was hoping to see more people from my own state join in.  Perhaps you are.  A recent comment from a person via Twitter, however, made me realize that there is a population of lupus patients that we won’t hear from (maybe all here in Oregon?).  Does that make their experience less important in learning about lupus, simply because they aren’t broadcasting them?  I don’t believe so. 

The comment I’m referring to was in response to my ‘tweet’ “So, what are you planning for Lupus Awareness Month?” I received an answer that hit the nail on the head and I think it represents a number of people living with lupus (or other illnesses) that are chronic and less visible to others.  The person said that she was hoping to be able to forget about it as much as possible.  Although she recognized that to others it may “sound awful…,” I think her comment is a solid and valid point. 

According to Dictionary.com , the definition for awareness identifies it as an adjective rather than a verb.  Yet, health advocacy has forced this measly description into action and its momentum grows every year.  Supposedly based on a variant of the Old English gewaer, meaning ‘watchful’, the modern definition has been translated to meaning conscious or aware of danger; alert; to be fearful, wary, or cautious.

Anyone else feeling a little uneasy about this? 

The comment my Twitter friend made, I think, reflects a key point in living with lupus:  we seem to be in a constant state of defense.  Physically, medically, emotionally, socially, mentally, etc.  It is no coincidence that facing health challenges often are referred to in somewhat military terms, as if we need to rally the troops in order to get by.  In our case, though, our troops are already out of control.  Does participating in awareness campaigns signal our minds and bodies to fight even more diligently, when what many of us really want is a break from the chaos?  It sounded like my Twitter friend does and, in my opinion, we are all due for a well-deserved one. 

I’m going to counter the movement today, not out of rebellion, but out of respect to those who are probably reading this anyway…others living with lupus.  As the world hears from many out there up for the battle to be heard, I send a wish, rather than a battle cry, for ease and peace today to those of us who are simply wore out.  Today, put aside the banners and colors, and wear the color that makes you happy.  Seek inward to learn something new about yourself, rather than focus on the persistent pain and fatigue of lupus that fill the stories being shared.  Be aware that, although lupus is a part of who you are in many ways, there is no need to be fearful, because there is a lot more to who you are than your illness.  By finding ways to liberate the other parts of you, you will teach others what lupus means to you.

No apologies are necessary if participating in World Lupus Day or Lupus Awareness Month doesn’t motivate the warrior in you~ you’re already at war and I know that.  Be good to yourself and put down the sword~ spend today in peace.

I have had the pleasure of meeting and collaborating with some amazing people, including the crew at the Spondylitis Association of America.

Although there isn’t an official chapter of the Spondylitis Association of America (SAA) here in Oregon, they do have a strong website and use social media (especially Twitter and Facebook) to connect with patients all over the country.  There is a support group listed on their website for our area, but if you can’t make it to Vancouver, WA where they are held, I encourage you to check out their website for all of their great resources and supportive options.

I hadn’t heard of AS until a friend of mine was finally diagnosed.  For years, she would talk about her symptoms and levels of pain that was just heart-breaking to listen to, leaving me helpless in giving her answers to the questions she so desperately sought from me.  Since then, I have learned a great deal from directly and through the SAA website.  My friend has also taken advantage of all they offer, has been able to develop better relationships with new doctors, continues to work full-time and is considering taking part in their PEER Mentor program as a “Mentee”.  She’s been officially diagnosed with AS for five years now and has come a long way, in spite of her continuing levels of constant pain.  The sense in knowing more about what is going on in her body and learning key tools in managing her symptoms have brought her to a stronger sense of personal determination and, well, hope.  That is the theme for the SAA and this celebration today. 

The words Ankylosing (“fusion”) and Spondylitis (“inflammation”) may be difficult to pronounce for some and you will often hear people refer to this disease as “Spondylitis” or just ”AS”. Straight from their website, the SAA describes AS as: 

“Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture.” 

Other common symptoms include pain, stiffness and inflammation.  Organs may also be affected such as the lungs or eyes, and, rarely, even the heart.  You can find more information about how AS may affect a person by visiting their complications link .  There is no known cure (yet), but options to aid in managing pain and inflammation are available.  

Take time to read the SAA website and check in on the Hope and Apples stories  website (and take part on the chat via Twitter #worldasdaychat), you will recognize many tales of challenge and encouragement.  Lupus and AS, or other illnesses, have more in common than different.  There is one particular entry from Christina McDaniel, who shares her story, video and blog links, as well as some beautiful artwork.  I think many of us can relate to her image, even though we may not live with AS.  There are many voices to be heard today, however, so be sure to visit them all. 

Learn more about these inspiring individuals and, if your life is also touched by AS, definitely consider the SAA as a valuable resource.

Here we are again~ National Lupus Awareness Month.  International Lupus Awareness Day is May 10^th.  In Oregon, SB348 (Senate Bill 348 designates May of each year as Lupus Awareness Month and makes May10, 2011, Oregon Lupus Day.) reflects the same awareness calendar, spotlighting lupus on behalf of many of us living with lupus…or does it?  

I’ve been at this blogging and social media stuff for a few years now, so I am used to the awareness and advocacy commitments made in other states.  In my own state, I’ve grown used to the silence in those areas and have backed off on trying to understand what makes Oregon either so private or so uninterested.  Actually, so have many organizations, services and programs.  From what I’ve learned, we don’t tend to join organizations because we don’t want them asking us for money or to volunteer our limited energy for events.  Both are reasons I can relate to, which is why I’m not a non-profit. 

Yet, it never fails~ I will be in the midst of a conversation with a bank clerk, fellow coffee addict waiting to order, librarian, hair stylist, nurse, my daughter’s teacher, and others, when they will share how they know someone living with it.  The topic usually comes up when people ask me what I do for a living and I mention that I am a wellness facilitator.  Naturally, that will require a little more discussion and up comes the ‘L’ word –  “lupus”.  What I can always count on at that point is that they will utter the phrase: ”Oh, I know someone with that” followed closely by either: 

a)  “She’s really having a hard time.” ; or

b)  “She’s doing pretty well.” 

We all seem to being doing okay, but no one really knows.  The State doesn’t keep track of lupus and lumps it in with arthritis.  Rarely is it listed on a death certificate and medical providers don’t have the time to get involved with surveys or questionnaires to help us learn more about who we are.  My own rheumatologist doesn’t even believe I have lupus anymore, because I don’t show any signs of it in my labs or symptoms.  More specifically, he suggests that I never had it to begin with, because it doesn’t really happen here in Oregon due to our overall racial demographics. Yes, here in Oregon, despite it being predominantly Caucasian, there are people living with lupus, doc. Do your research and you’ll see there is a particular group of us with lupus who present differently, but we still have lupus.  My feathers were a little ruffled by his comment, mainly because I work hard at managing my lupus, and there he is minimizing it all.  I think the hardest part is really getting a clear picture about what  lupus is and finding some agreement among all of the communities who are working/living with it. 

In the last couple of years, I’ve tried to come up with projects that reflect the month-long lupus activities by approaching ‘awareness’ in a different fashion, to compliment everyone else’s work.  The use of social media and blogging has increased exponentially, offering more to read, learn and take part in than ever.  I know that readers will not have any trouble in finding stuff and probably more trouble in keeping up with all of it.  So, that leaves me with the question:  Where is my place, on the part of the silent Oregon lupus majority, in reflecting what we here think about, need to live well with or can benefit from regarding our lupus. 

I’m at a loss.  Not because I don’t think Oregonians have lupus, but because I don’t have enough to go on due to their lack of voice.  I am uncomfortable in representing Oregon, which MLWT has grown to be, not really knowing my own community. 

I have done a little research and am busy in the community these days with events, workshops and classes, collaborations, referrals and my direct services.  However, in order to keep things growing, I have had to expand from lupus out towards autoimmune and other lesser-known chronic illnesses.  Even though I hoped MLWT could be a hub for those with lupus, I have been excited to see that by including and incorporating what I do here has overwhelmed me with a sense of comfort to see how much we all actually share rather than differ in. 

This month, I’ll be writing more frequently and it will be covering many aspect of living with chronic illness, not just lupus.  I hear from more people with fibro than lupus, and I want to be sure to commemorate National Fibromyalgia Awareness Day in their honor.  I will be hosting guests, both locally and nationally, to write about what they know, what they do and what they recommend.  I’ll be highlighting some books and tools that are valuable in strengthening wellness self-management. I will introduce more specifically some of the work I do and how I do it.  I will be spotlighting some local health resources and reviewing some of my favorite places to visit on the web.  I will be busy with Living Well with Chronic Conditions classes and starting the pilot exercise class through the Arthritis Foundation.  I will be heading up to Seattle to help with the LFA’s Pacific NW Chapter support group facilitator training this month (it will be here in Portland next month on June 11^th).  These are just a few things I do regularly, but I will take this month to make things more visible.  Maybe if I open up about who I am, so will you. 

My calendar is beyond full and I know I am going to be working over-time, challenging myself in practicing what I preach: balance.  However, I think that if I get busy writing about our lives as a collective of experiences, rather than focusing on a particular disease, maybe I’ll have the opportunity to meet (and hear) from more Oregonians.  Perhaps you’re doing ‘just fine.’ Perhaps you’d prefer to handle things yourself.  Perhaps you aren’t ready to ‘accept’ the illness, concerned that seeing it makes it final.  Whatever the case, MLWT has become a beacon of sorts representing a voice, not a non-profit.  An idea, not a sound bite.  A collective, not an exclusionary group with their eyes set more on copyright than support.

I encourage you to get to know me and MLWT a little better this month.  Not as someone who knows more than you about living with health challenges, but as someone who wants to learn from you in order to do things better. 

I want to boost my awareness of those with whom I share this beautiful state.  Of course, I learn a great deal from others outside of Oregon and SW Washington, too, and I certainly want to keep hearing from you, too. 

So, gang, here we go! Today begins a month of spotlighting not our lives with an illness as much as succeeding with health challenges that makes our lives worth being aware of.

There was the news of the new lupus-specific treatment, Benlysta, approved (with caution) by the FDA for some lupus patients.  Good news that lupus has finally made some headway in gaining ground in research towards understanding more about the complexities of this disease.  As I celebrate the initiative by researchers for stepping onto the road less travelled, I continue to emphasize caution in becoming too hopeful or feeling as though we have reached the ticker tape at the end of the race.   

I know there are many out there celebrating this event and be assured that progress is something I truly do want when it comes to lupus treatment options.  However, I am a wellness professional and it would be irresponsible of me to not point out some very key concerns and questions still needing answered. 

Benlysta has limited range in its overall effectiveness, the target population within the lupus community and backing by the medical community (including service programs, insurance programs and industry, as well as the physicians themselves.)  This means that now that we have new potential in our lupus treatment options, we must continue to see our overall health and wellness as a team approach within a big picture while considering to bring  it into our lives. 

Consider also: 

~ The expense of this treatment option is estimated to be about $35,000 per year for each individual.  Even if you have insurance or are on a state-supported medical plan, understand that they aren’t going to be jumping at the chance to put out that kind of money.

~  The slim margin that the FDA approved this medication.  How much faith do you have in the FDA knowing what’s good for us down the road?  If they are questioning it, …

~ Your ethnicity.  This medication has not been approved for use among women of color, notably African American patients.  Although they are continuing to test and there are patients who have benefited from taking it during the trials, the research just doesn’t back its use for this population.

~ Your unique form of lupus.  Benlysta helps with fatigue, skin involvement and offers options to reduce or eliminate the reliance on Prednisone.  Barely for some, more for others.  Everyone’s lupus in unique to them and what will be effective for a few may not be for someone else and may potentially create more harm.  There were deaths during the trial and, with this medication still in its infancy, remain diligent in assessing its benefits when speaking with your medical provider about incorporating it into your treatment plan.

~  Finally, the pharmaceutical industry is looking at lupus as a big money-making opportunity (not to sound like a conspiracy theorist or anything – it’s a for-profit industry.)  The researchers are challenged by the magnitude of the immune system’s capacity to affect our lives.  Big Pharma, however, sees great revenue potential in addressing an illness that covers a vast amount of symptoms to treat , not rid us of. 

There is already difficulty for some of us to receive or even maintain a diagnosis of lupus, due to its variability, inconsistency and complications in symptoms.  A cure, although wished for by all of us, is many years away.  Today, we have to ask ourselves questions pertaining to our quality of life and who is in the driver seat in determining what is our own definition of “quality.” If your doctor is ready to begin, be sure to remain a key participant in your treatment planning and speak with your doctor honestly about any concerns you may have about Benlysta, or any medication you use. 

I know we hurt.  I know we are physically weak and live with symptoms that can be extremely debilitating.  I am very happy to know that many of us have something new to consider.  I also have worked with many people on strengthening their wellness by taking charge of their lives rather than seek out  new medications.  Everyone was thrilled with Prednisone when it came out, too.  Keep in mind that Benlysta is still very new, so please consider all of your options and not just the synthetic ones.  If you’ve ever paid attention to those ads on TV for medications, you’ve already learned that  the side effects can sometimes be more brutal and life-altering that the disease itself.  I just feel stongly in questioning the automatic reach for a pill or shot,  rather than exploring more seriously other methods for taking care of ourselves as whole beings, not just physical ones. 

You deserve to be more healthy and well~ and it will be up to you to really make that happen. 

My response here is my own and doesn’t represent the entire MLWT community.  I know it’s easy to say “do the work” when we feel so beaten down already.  My posts here will become more proactive in offering options based on evidenced-base research and emphasizing local resources.  Even if you aren’t in Oregon or SW Washington, I am certain you will find something you can use.

I would like to welcome Tina Pohlman, as our newest MLWT Guest contributor.  She is the President, Co-Founder, Executive Director of the APS Foundation of America, Inc. .  She is also an APS and Lupus Patient. 

Tina is an amazing advocate for APS and is someone who is passionate about providing useful, accurate and relevant information to patients living with this syndrome.  By working through the challenges with autoimmune disorders herself, she is a definite go-to person for those of you seeking quality support and further education for managing your APS.  We frequently rely on her experience and knowledge, and are very grateful to her for joining our team.  She will be contributing APS-related articles from time to time for our MLWT community.  If you have APS questions that you would like her to address in the future, please send them to us here at MLWT.

I am handing over the blog today so that Tina can explain a little more about APS—particularly how this disorder relates to lupus.  This article is extremely technical and gets into some pretty specific medical information.  Please consult your physicians first regarding any of the information you read here and, if you have questions or are seeking more general information, Tina is available to address them, too.  You can either post your comments and questions for her here or contact her directly on their website’s Contact page . 

Please welcome Tina to our community~

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 

Why is APS relevant to the lupus patient?: Tina Pohlman Explains

What is Anitphospholipid Antibody Syndrome (APS)? 

APS is an abbreviation for Antiphospholipid Antibody Syndrome. APS is also called APLS or APLA in the United States and Hughes Syndrome or Sticky Blood in the UK. 

APS is associated with recurrent clotting events (thrombosis) including premature stroke, repeated miscarriages, phlebitis, venous thrombosis (clot in the vein) and pulmonary thromboembolism (blockage of an artery found in the lung due to a clot that has traveled from a vein). It is also associated with low platelet or blood elements that prevent bleeding. 

Recently, however, even more disease states have been linked with APL including premature heart attack, migraine headaches, various cardiac valvular abnormalities, skin lesions, abnormal movement/chorea, diseases that mimic multiple sclerosis, vascular diseases of the eye that can lead to visual loss and blindness.

The two major antibodies that distinguish APS, ACL and LAC, are frequently found in lupus patients, and certain other antibodies also occur with higher-than-normal frequency in both conditions. But the presence of one or more of these antibodies doesn’t necessarily mean that you have either condition; the diagnosis for either requires specific clinical evidence, not just antibodies found in lab tests.

Laboratory Tests Used to Diagnose and Evaluate Lupus 

Lupus is characterized by abnormalities in many laboratory test results. These abnormalities are different for every patient and they vary significantly during the course of a patient’s disease. The serial evaluation of an individual’s tests along with the physician’s observations and the patient’s history determine the diagnosis of systemic lupus erythematosus (SLE), its course, and the treatment regimen. All laboratory values must be interpreted in light of the patient’s present status, other correlating laboratory test results, and coexisting illnesses.ˡ 

This article describes the major tests used to diagnose and evaluate SLE and provides information on their rationale and clinical usefulness.

Diagnostic testing relies on two concepts, sensitivity and specificity. The first term refers to whether a test is likely to miss many cases of the disease or disorder for which the patient is being tested. The second refers to whether the test is helpful in narrowing the diagnosis to the condition being tested for.²

Antinuclear Antibody (ANA)

A positive result for the presence of these antibodies, which your immune system produces, means your immune system is “stimulated”. That’s a common finding if you have SLE or another autoimmune disease. The ANA is close to 100% of patients with active SLE. However, it is also positive in 95% of patients with mixed connective tissue disease, in more than 90% of patients with systemic sclerosis, in 70% of patients with primary Sjogren’s Syndrome, in 40%-50% of patients with rheumatoid arthritis, and in 5%-10% of patients with no systemic rheumatic disease.ˡ ANA testing is thus highly sensitive but not specific.² The sensitivity and specificity of ANA determinations depend on the technique used.ˡ

Anti-Sm

Anti-Sm is an immunoglobulin specific against Sm, a ribonucleoprotein found in the cell nucleus. This test is highly specific for SLE; it is rarely found in patients with other rheumatic diseases. However, only 30% of patients with SLE have a positive anti-Sm test.ˡ  It may be unique to SLE; a finding with low sensitivity but high specificity.²

Anti-dsDNA 

Anti-dsDNA is an immunoglobulin specific against native (double stranded) DNA. This test is highly specific for SLE but not particularly sensitive and it is not found in patients with other rheumatic diseases. Anti-dsDNA is found in at least 50% of SLE patients at some time.³ For many patients with anti-dsDNA, the titer is a useful measure of disease activity. The presence of anti-dsDNA is associated with a greater risk of lupus nephritis.ˡ

Anti-Ro (SSA) and Anti-La (SSB) 

These immunoglobulins, commonly found together, are specific against RNA proteins. Anti-Ro is found in 30% of SLE patients and 70% of patients with primary Sjogren’s Syndrome. Anti-La is found in 15% of people with SLE and 60% of patients with primary Sjogren’s Syndrome. Anti-Ro is highly associated with photosensitivity both are associated with neonatal lupus.ˡ These antibodies often accompany the Anti-Sm.² 

Complement 

Complement proteins constitute a serum enzyme system that helps mediate inflammation. Complement components are triggered into an activated for by such immunologic events as interaction with complexes. Complement components are identified by numbers (C1, C2, etc.) Genetic deficiencies of C1q, C2 and C4 although rare, are commonly associated with SLE. A test to evaluate the entire complement system is called CH50. The most commonly measured complement components are the serum levels C3 and C4.ˡ  The total amount of complement in the body at any given moment is finite. Therefore, if a complement has been drawn to sites of immune complex activity, there will be lower than normal levels in general circulation. In SLE, at least in active disease, serum complement levels are low. This pattern is also helpful in monitoring treatment.²

Erythrocyte Sedimentation Rate (ESR) and C-Reactive Protein (CRP) 

Tests for ESR and CRP are nonspecific tests to detect generalized inflammation. It’s specificity is very low, but it does indicate something is amiss. Levels are generally increased in patients with active SLE and decline when corticosteroids or nonsteroidal anti-inflammatory drugs are used to reduce inflammation. However, they do not directly reflect disease activity.³ 

Antiphospholipid Antibodies (APLs) 

APLs are autoantibodies that react with phospholipids. Recent data indicate that APLs recognize a number of phospholipid-binding plasma proteins (e.g., prothrombin, β2 glycoprotein 1) or protein-phospholipid complexes rather than phospholipids alone. APLs are present in 50% of people with SLE. Antiphospholipid Antibody Syndrome occurs in 50% of SLE patients who have the lupus anticoagulant. This syndrome is characterized by a persistently positive lupus anticoagulant or medium to high titer Anticardiolipin or anti- β2 glycoprotein 1 in the clinical setting of thrombosis, fetal loss, multiple first trimester losses, or preterm birth from severe placental vasculopathy.

APLs and Antiphospholipid Antibody Syndrome (APS) may also occur in patients without SLE. APLs are detected in three types of laboratory assays: 

· Lupus Anticoagulants. Lupus anticoagulants are APLs that inhibit certain coagulation tests, such as the activated partial thromboplastin time (aPTT), dilute Russell viper venom tme (dRVVT), and kaolin clotting time (KCT). Although the antibodies act as anticoagulants in these laboratory assays, they are not clinically associated with hemorrhage, but with thrombosis, pregnancy loss, and other manifestation of the Antiphospholipid Antibody Syndrome. Most lupus anticoagulant antibodies are directed against β2 glycoprotein 1 or prothrombin.

· Anticardiolipin antibodies (aCLs). Sensitive enzymes-linked immunoabsorbent assays (ELISAs) using cardiolipin as the putative antigen are commonly performed to detect aCLs. In patients with Antiphospholipid Antibody Syndrome, most antibodies detected in the Anticardiolipin ELISAs are directed against the cardiolipin-bound β2 glycoprotein 1. 

· anti- β2 glycoprotein 1. Because ELISAs do not recognized cardiolipin unless β2 glycoprotein 1 is present, anti- β2 glycoprotein 1 detection assays have been developed. These assays have revealed that anti- β2 glycoprotein 1 antibodies may be more strongly associated with Antiphospholipid Antibody Syndrome than are the anticardiolipins.ˡ 

Clinically, APS has also been associated, in significant proportions of patients, with several other disorders. They include particular neurological problems, notable seizures or migraine headaches; joint pain and inflammation; livedo reticularis, patch discoloration of the skin caused by dilation of small blood vessels; avascular necrosis of bone (even when corticosteroids, with which this condition usually associated, are not being taken); leg ulcers; hemolytic anemia; and various other troubles traceable chiefly to circulatory problems, including thromboses both major and minor. All APS-related difficulties are exacerbated by smoking and uncontrolled blood pressure, diabetes, and high cholesterol.²

Resources:

1: Lupus: A Patient Care Guide for Nurses and Other Health Professionals. 3rd Edition, National Institutes of Health, National Institute of Arthritis & Musculoskeletal & Skin Diseases. 2006 

2: Living with Lupus: The Complete Guide, written by Sheldon Paul Blau, MD & Dodi Schultz, 2nd ed., rev. and updated 2004

3: Lupus: You Can Take Charge of It, written by Victoria Scanlan Stefanakos, 2005

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

Founded in 2005, The APS Foundation of America, Inc. is the leading United States nonprofit health agency dedicated to bringing national awareness to Antiphospholipid Antibody Syndrome (APS), the major cause of multiple miscarriages, thrombosis, young strokes and heart attacks. We are a volunteer run, community based 501(c)3 non-profit Public Charity organization and is dedicated to fostering and facilitating joint efforts in the areas of education, support, public awareness, research and patient services.

As I am posting this next photo for the National Invisible Chronic Illness Awareness Week  , I noticed that there are a few interpretations that can be applied to this particular picture.  Isn’t that just like lupus?  It represents something different not only from one person to the next, but from one minute to the next!

What I was going for here was the example of how my lupus tends to insist on being included in my daily activities.  Let’s take that a little farther, though.

What else can I see going on here?

~I see someone in the middle of a conversation who is looking at me and NOT interacting with my lupus.  She either doesn’t see it, doesn’t care to see it, or doesn’t want to socially engage with something/someone unknown to her.

“Do I introduce her to my lupus or do I try to ignore the interruption?”

~I see my lupus approaching with ‘body’ language that would appear less threatening and genuinely interested in being included.  That sounds ridiculous, doesn’t it?  If you think about it, lupus is a disease where the immune system becomes confused and works too hard, forgetting how to do the job right.  When we perceive threat, what are we really telling our immune system?  Fight harder.  In order to help our systems and manage our lupus, we have to become effective mediators.

“Would I choose to assume I’m being threatened or is there a chance we can negotiate?”

How about the other body language in the photo?

~ I see myself standing with arms tucked close to my body and my listener is doing the same.  In fact, the only ‘person’ engaging in an open communication is my lupus!

“Does that look like a conversation someone entering into the picture would feel excited to join in on?”

~ I appear to be frustrated, irritated, in pain or dizzy/fatigued.  Even from behind, my listener seems to be waiting to hear more, perhaps to figure out what is going on with me.  A caption would be helpful…or even audio, so we could hear what’s going on.

“How do we know what I’m really feeling?  Do I even know myself?”  

You can see where I’m going with this.  We represent our lives with illness every minute of every day and we need to recognize that we are solely responsible in making sure the picture we’re putting out there is the one we want people to see.  Granted, there are a lot of compassionate and committed people in our lives who “get it”.  However, there are many more out there who don’t get it and won’t, even if they have lupus themselves.  Rather than focus on how frequently pictures of our illness are misinterpreted, let’s ourselves get behind the camera and create the photo shoot we want.  We can never completely rule out individual interpretations.  However, with a little planning, we can better minimize misunderstandings. 

This week, ask yourself about the snapshots of each day.  Who is the subject?  Where or how is lupus involved?  What are you doing, feeling, needing right now?  What is your body language saying and is it what you want it to be sharing or would you make some changes?  If you’re feeling particularly strong emotionally, ask others what they see and listen to them.   Are they on target or are there some revisions in your picture necessary?

What else do you see in my photo here today?  What are the little details that I haven’t mentioned that stand out to you and bring more to this ‘conversation’?  What may seem unimportant could very well introduce barriers or open doors, so it is a good idea to keep our health pictures as uncluttered as possible to ensure others will pick up the messages we are intending.   As Henry David Thoreau put it: 

“Our life is frittered away by detail… simplify, simplify.”

Model the day you can have, even if it isn’t exactly the one you would like to have.

And, most importantly, be sure to give yourself a smile.

At first, I thought about using the bag as a way to put my ‘face’ on lupus.  However, as I thought a little more about it, I didn’t feel comfortable about having lupus take up any more of my identity.  The way I see living with lupus is, basically, living with lupus as if it was a separate entity.  So, with the help of a few of mother’s helpers, the photos I’ll be sharing for my theme will represent just that:  My lupus is something I have to negotiate with, tolerate, be respectful of, accept the presence of, laugh at, fight with, and accept as a part of my life.  It is a chronic illness that, if we both cooperate, will remain a chronic nuisance and not necessarily an early death sentence.  That also means, for those of you out there who don’t have it, it will never go away.  This relationship is a long-term till death-do-us-part kind of situation, so don’t bother asking me if I’m “…okay now?”  Just so you know, that will never happen.  

I think today’s photo sums up what I’m saying pretty well:

“What used to be my dirty laundry.” 

I’ve been reading some articles and comments lately about the struggle between people wanting to hang their clothes out to dry in order to live more “green” and the homeowner associations throwing fits about it.  I, personally, have been gearing up to battle our developer and lynch mob, who maneuvered around the “Homeowner” title and uses instead an “Architectural Control Committee”.  I plan on investing into solar attic vents and a hot water system…for starters.  I know my residential ”committee” is going to have something to say about my choices.  Until they live within my walls, though, I am still Queen of this roost.

This is what prompted me to create this photo.  We live with others in our respective communities and there are groups of people with agendas, under the guise of “wanting what is best” for us.  There is a fine line that we all tend to stumble over when trying to do “what’s best” for others. 

Sometimes, taking over the personal decisions of those living with illness leads to misunderstandings and creates additional barriers to exercising their individuality. 

With freedom in anything comes a great deal of responsibility, too.  We, as patients, need to be able to take some health responsibilities on ourselves.  The support of others is also important to our healing and sometimes asking for (or accepting it) isn’t easy.  Acknowledging that our lives now include negotiating with a chronic illness is an important step for us, and for those around us, to successfully move forward. 

Don’t forget that there is still a person within that more complicated body wanting to express who they still are…even if some of it isn’t very pretty. We all just need to give each other a little space to figure things out and be sure to remember that, chances are, we are all working towards the same goals.

So, this week, it is all about putting it out there ~ how is your laundry doing?