Not to say that using materials to network wouldn’t be smart, as I aim to make a living, but it just isn’t who I am.  So, you probably won’t see anything about me at the next health fair or support group meeting.  This website is enough for me and referrals from people matter more than anything.

What I have been asked to do, however, is to write up a bio and put together a CV (Curriculum Vitae) for new collaborations with Naturopaths and health systems that I’m now working with directly.  It has been a struggle to comb through years of service work, counseling, grant writing, program development, crisis intervention/family mediation, youth case management, graduate studies, research, and so on.  I’ve also learned that it is very important to include volunteer work, which only made this whole exercise that much more daunting.

This additional recommendation of using volunteer work as “work experience” reminded me of a conversation I recently had with a workshop participant about how much work living with chronic illness can be for all of us.  Simply managing all that we have to manage to get through our days, weeks, months and years is, in itself, a full-time job.

My exercise in getting this bio/CV put together has been to go back to my professional beginning (starting in high school, apparently) and identifying all of my skill building opportunities that have contributed to who I’ve become over the years. Basically, write my professional story.

I would say that we could all stand to take some time and write our story, as if learning to manage the challenges of our health has become what we “do.”  Why not?  We keep going to workshops, reading books, searching the internet, taking classes, going to our medical providers….all under the assumption of “If I just knew…” 

Through my work as a facilitator, and based on my past service work experience, you will discover what I have over the past couple of days in doing this exercise…

we already know a hell-of-a-lot…and it’s damn time to give ourselves some credit for it. 

Take time to stop expecting someone out there to have more knowledge about how to care for ourselves better than we already do.  Give ourselves more credit in the level of expertise based on our own personal experience, trial-and-error and real-time living.

Write your own C.I. (e.g. chronic illness) ‘resume’ – you will be shocked at how powerful your own professional skills have truly become over time.

And smile – you’re amazing.

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

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

A quick note about our LFA Pacific NW Chapter’s webinar today~ “Living With Lupus” featuring Philip Moberg, MD out of Seattle.  He will be offering an overview of the disease and its many forms, the diagnostic process, common symptoms and current treatment options. 

This is a great opportunity for you to reinforce or clarify your current lupus management, the information you have come across or explore some of the questions you may have about your lupus.  This is also an excellent way for those of you, who may know someone with lupus, to learn more about this disease and better understand some of what you don’t see that goes on underneath their surface.  Although questions need to be submitted two days before the lecture (sorry for this late notice), you can still submit them for follow-up by emailing info@lupuspnw.org.

To listen in on the lecture, dial the toll-free Lupus Inform number:

(866) 516-3949 and enter the participant pin number: 7223925#

If you miss this live broadcast, a taped version will be available for 60 days.  Beginning two days after the lecture airs, you can listen by dialing (866) 453-6660 and enter the same pin number 7223925#.

The next PNW LFA webinar will be on August 17^th at 5pm and will cover nutrition tips on how using a healthy diet can help manage and reduce your lupus symptoms, as well as increase your overall well-being.  Presented by nutritionist Amy Putiri, MS, CN, you will offer advice and information that you can apply to your daily nutrition patterns.  Remember to submit any questions to the PNW Chapter by August 15^th at 5pm.

Take advantage of this opportunity offered by our PNW Chapter.  I will soon be introducing you to the new President/CEO, Mary Prudden,so that you can meet this dynamo at the helm.  She has great things in store for us here.

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.

“Guest speaker at the next Scleroderma Support Group Meeting in Portland is Naturopathic Physician Serron Wilkie N.D. at 10am Saturday, November 13 at Legacy Good Samaritan Hospital.  “How Integrative Care Can Improve Your Health: Natural Treatment for Patients with Scleroderma and Autoimmune Disease“ will be presented by Dr. Wilkie followed by Q&A.

According to the Kwan-Yin Healing Arts Center website, Dr. Wilkie “helps her patients restore a sense of ease, harmony and joy in their lives by creating optimal health and sustainable wellness. Patients who have not been helped by other conventional or alternative treatments often seek out Serron for relief and deep healing.

“She earned her naturopathic medical degree from the National College of Natural Medicine (NCNM), the oldest school of naturopathic medicine in North America.  There she was honored with the Nature Cure Award for embodying the principles of naturopathic medicine.”  Find out more about Dr. Serron Wilkie N.D. at kwanyinhealingarts.com .

Donna says that she is warmly encouraging people to come to the Nov. 13 meeting for an end-of-the-year gathering.  She hasn’t seen some people for quite a while and would dearly like to touch base as we close out 2010.” 

All Scleroderma Support Group meetings are free and open to the public.  This Oregon Chapter event is scheduled for 10 am at Legacy Good Samaritan Hospital (Wistar Morris Room on 1st floor), 1015 NW 22nd Avenue, Portland, OR.  For more information about this or any chapter support group topic, please visit their website.

Her post reflects many common thoughts and threads about support groups, be them online or in-person, and I’m glad to see she’s putting her thoughts about this issue out there.  With the increasing availability of online support resources, I’ve been tracking to see trends in how in-person support groups will fare.  Although we would assume that everyone is online these days, you will be surprised to know that we actually use the computer less than other countries and I regularly hear from people when I’m in the community that they don’t use the computer for much of anything other than online banking.  As more people catch up with the idea of using Facebook, Twitter or other online social networking sites, I am watching many of the health veterans that I have followed for the last few years dropping off the radar.  There is a changing of the guard, so to speak, with new writers and new voices being added to the conversation of chronic illness advocacy and support…just as it should be.  One voice can’t cover it all.

That’s where I think Leslie’s post brings the idea of support groups as an option to help cope with illness mirrors this change in what we’re seeking in support. 

I did a local research study some years ago for a health foundation here in Oregon to learn a little about lupus support group participation.  What was important about my study is that I also interviewed people who chose not to attend groups, which usually isn’t the case in support group research.  One result from my study showed women who chose not to attend lupus groups had positive views of groups, but didn’t think they needed them, because they had enough family support.

What I discovered, though, is that they worked very hard to not burden their families and sought their emotional support needs from their doctors.

  Anyone here have a 10-20 minute appointment with their doc to sufficiently address their emotional needs?  My guess, and from what I hear from many people here and all over the country, is no. 

What I found, and what I’ve experienced personally in attending groups and living with lupus myself, is that support is a term we all need to define for ourselves.  We also need to recognize that our needs aren’t fixed, but change and adapt.

  I would have to say that the key is in determining what works for you and to make sure that, whatever your support need is at a particular moment, you match it with the right type of source to make it effective.

The wonderful thing about support theses days are the amazing number of options that are available, that weren’t available even a few years ago.  If you don’t want to attend the groups in person, then don’t but be sure to ask yourself what it is you do need.  If you aren’t making a connection with the group you are attending, then seek another to try out.  Personalities, facilitator skills, content and convenience are all factors to consider when opening up your life to others.  If you can’t find a specific group in your area, say a lupus group, then consider attending another group that is similar.  For example, I frequently recommend the local Scleroderma support group to people living with lupus here in the Portland area as a wonderful option, even if it isn’t specifically for lupus.  That’s one reason I work closely with them as a resource partner, because they have their groups open to anyone and the health challenges between people living with scleroderma and those with lupus have more in common than are different.  If you’re in the Portland area and want a supportive environment with an amazing bunch of people and terrific speakers/activities, stop by and meet them .

Online support is great for those who need the convenience or anonymity to reach out to others in time of need.  The more variety we have in our support sources, the more likely we will be able to match our needs with something that works and get us back on our feet much sooner.  There is no right or wrong support resource—only the right or wrong match. 

I would love to hear from you on the types of support sources that you use or what types of support you’re looking for and can’t find, especially if you live here in Oregon or SW Washington.  My goal is to fill some gaps among services already out there.  Your voice will help some of those options become available. 

Thanks, Leslie, for contributing to this important conversation~

“Here’s a few details from the instructor about the next Scleroderma Support Group meeting featuring a Pilates presentation by Mckenzie Petterson (photo attached) at 10am Saturday, May 8 at Legacy Good Samaritan Hospital (Wistar Morris Room on 1st floor), 1015 NW 22nd Avenue, Portland, OR. 

The Support Group meeting and presentations for Portland and SW Washington are always free and open to the public.   

1. No pillow necessary. Comfortable clothes preferable (no jeans). 

2. The Pilates will be tailored to scleroderma patients. 

3. Attendees will not need to move around a lot.  We will either sit in their chair or stand (probably both). 

4. I will make a short “workout” for them that will be passed around.  I will include a few anatomy pictures as well that we will go over. 

5. People should be expecting to listen to a short history of Pilates and an explanation of what it is. I’ll also give a little personal history of myself and why I do what I do. I’d like to also take a look at the anatomy pictures before we move. We will then do seated breath work. I’ll probably go through a few exercises focusing mainly on range of motion and core stability. I’ll also bring in spiky balls which I have found very helpful with a few of my clients that deal with joint issues.     

Mckenzie Petterson opened Moving Moxie Pilates in 2008 after training with the Core Dynamics Pilates program. Her love of Pilates started in 2002 when she realized the amazing impact it made on her body and overall health. Mckenzie’s ultimate goal is to see a smile on everyone’s face as they make their best effort in class, be it a group mat class, duet or private lesson. Kenzie was trained by Core Dynamics and is PMA certified and utilizes every opportunity to continue her development as a Pilates instructor and small business owner.”

Here  is their invitation to you and a little information about what their afternoon plans to offer:

“The Oregon Chapter of the Scleroderma Foundation has announced that Dr. Catherine J. Markin – a noted specialist in pulmonary disease and critical care medicine at Legacy Good Samaritan Medical Center, and Director of the Legacy Pulmonary Hypertension Program – will present the 9th Annual Cheri Woo Education Seminar ’s keynote address scheduled for Saturday, March 13, 2010 at Tuality Health Education Center in Hillsboro. The free public seminar runs 10am through 2pm.

Dr. Markin will offer “Lung Disease in Systemic Sclerosis: New Insights and Treatment Options” as part of the chapter’s daylong line-up of expert presentations intended to increase overall education and raise regional awareness of scleroderma, also known as systemic sclerosis.

In addition to Dr. Markin, the seminar is scheduled to present Dr. Anna A. Bar, an Assistant Professor of Dermatology and Dermatologic and Cosmetic Surgery at Oregon Health & Science University.  Her seminar topic is Cutaneous Manifestations of Scleroderma and Laser Treatment.  Justin Elson, DMD, of Gentech Dentist Hillsboro, will speak at the seminar on Scleroderma and Oral Health.

Scleroderma (pronounced sclare-a-derma), or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The term comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Symptoms can range from extreme sensitivity to heat and cold to hardened skin to diminished lung capacity and disfigured face and limbs. Scleroderma can be fatal, and there is no known cause or cure.  An estimated 300,000 people have scleroderma, of which 80,000 to 100,000 people in the US have the systemic form of the disease.  Scleroderma affects four times as many women as men, usually between the ages 46 to 65.

The annual spring education seminar by the Oregon Scleroderma Chapter is always free and open to the public. Breakfast and lunch are provided with every registration.

For more information, and to register online .

We have been discussing the importance of reaching those medical professionals who work most closely with lupus patients for quite some time  and are thrilled to be the first within the Lupus Foundation to gain such an opportunity!

There will be more information coming soon regarding speaker, topic and other details.  If you are a medical professional who may be interested in pursuing CNE credits in general or lupus education specifically, the website to learn more about the upcoming details will also be found at the University of Washington School of Nursing website.

Great job and thank you, Kathy, for being so proactive in securing our voice and our medical support!