Healthcare.gov is coordinating this insurance plan that has been offered to all 50 states as a means of meeting some of the immediate needs until the entire 2014 health care reform law will take effect.   Some states opted out of using the allocation funds due to their concerns about receiving enough funding to cover the insurmountable health care costs facing their high-risk residents.  Oregon is one of the states that opted in to using the funds for this new insurance plan and you can find out more about what  the program might offer you by going to this Healthcare.gov link. 

I know that there are plenty of people in this high-risk category and that it would be impossible (on many levels) to create a plan that offers something for everyone.  Although my situation meets the criteria to pursue this option, the fact is that I would end up paying more per month than I do now and I simply can’t afford it.  That isn’t by choice, mind you. 

The whole idea behind insurance is that we put money into a bucket per month that is supposed to insure us from future medical expenses and I get that.  Paying something each month to know that I will have some help paying for appointments, procedures and (heaven forbid) emergency situations is a wise investment.  Here’s the catch, however.  I paid for years when lupus hadn’t even arrived yet into a large insurer’s pocket and rarely needed any medical services.  I was young, healthy and taking the best care to make sure I stayed that way, yet I still paid them for this unused care through my employers totaling several thousands of dollars.  Decades later, and without warning, my health took a turn and I needed that coverage.  Although my employers and plans had changed, this company had my name and track record on file.  In spite of the money I paid and with little cost to them from their profits via my investments, they threw me to the curb.  Actually, they threw me to the curb AND sued me for $10, 000 claiming I knew I was sick before I signed up for my health plan.  Hello, …my doctors didn’t even know what was going on until my kidneys shut down.  But, that’s a nightmare best left in the past. 

It is the past, however, that has put me where I am today.  I cannot get insurance, even if I could afford it.  There are many things about the new Affordable Care Act taking effect in 2014 that has me worried.  As wonderful as it feels to think that I will have coverage, even with my health history, I still don’t know how I will be able to afford it.  Having options is one thing, but the question about who foots the bill—our government or myself—is what haunts me.  I agree that we need to develop a healthier country and providing more health care options is a great step forward.  The health care costs are still way too high, though.

Do I want to, once again, put what cash I have into my health care bucket only to have an insurer avoid returning my investment when I need it?  Will they hike the expenses and/or claim that I did something that disqualifies my right to the care I invested into?  Worse yet, as this news segment points out, what if I put into this plan and they run out of money before I need it?  Let’s face it, insurance may be profitable, but managing my own health care is not. There’s something really wrong with that.

As I wait for the industry to be seriously overhauled, I focus as much as I can in making the best choices I can every day to avoid future health woes.  There’s no guarantee either way, whether I pay an insurer or myself to put into a savings account, that I will have the care I need when I need it.  I can’t control what the insurance companies do, what the government will or won’t provide or how my lupus will progress.  There are a few things I can eat, move, try, think and prepare for that might cost me less down the road.  Even that sometimes costs me a pretty penny, but well worth the effort. 

The gal in this news segment, Ms. Eaton, who is living with the heart condition represents many of the people I work with every day.  She also represents my situation very closely.  Many of us aren’t disabled, are still working, take care of ourselves and are willing to pay what we can.  We understand that health care will never be free and that preventing illness would be ideal.  We also know that we don’t ask for diseases like lupus, genetic or congenital conditions, see ourselves as victims or live to frustrate the medial establishment.  We are simply going to have to do what we can with what we have until “health” is as valued as “profit”.

Where are you in all of this?

• Have you lost your health coverage through loss of employment or cutting costs at work?
•  How well can you manage your illness without care?
•  What are some of the things you let go in order to manage your health?
• How do you expect to handle the 2014 shift?

 After taking a look at the news segment link and learn more about what the preexisting insurance plan offers, I would be interested in hearing what you think.  Share your story, too~  you’re not alone.

I received a note from the Oregon Chapter of the Scleroderma Foundation that they will once again be on our own KATU Channel 2 AM Northwest morning show!  This Thursday,July 1st, AM Northwest will generously offer program time for the chapter’s scleroderma awareness team to introduce information about living with scleroderma and to present the upcoming “Stepping Out To Cure Scleroderma” benefit walk scheduled for July 10th here in Portland.

The exact time for the team, composed of chapter members Maria Rivelli, Sue Pinkerton and Erion Moore,  isn’t set until the show airs, so you will need to watch the entire show between 9-10 am.  This program (and station) has been very generous and supportive over the years, so consider letting them know how much you appreciate opportunities (such as this Thursday’s show) to learn about our local health and wellness resources. 

Also remember to register for the 5th annual benefit walk on Saturday, July 10th.  You can do so by going to  their Firstgiving page .  Also, you can find more walk details at the Scleroderma link under the “Announcements” tab on our main page.

“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.”

Today, this post is a catch up response and I need to write it all out, so that I can make some room in my head for the piles still sitting on my desk.  Hang with me today and maybe there is something that will be interesting or useful for you, too.

The first thing I want to mention is that March is Worldwide Red Cross Month.  Although we with lupus are not exactly the donor pool they’re looking for and deal with more than our share of lab work, there are still several ways to contribute back to our community.  The Oregon Trail Chapter of the Red Cross has a blog ,written by locals, offering opportunities to learn more about what’s available here.  In fact, I have recently signed up to take an Adult CPR class in April (as my first step towards some certification credentials.)  Their blog offers other things such as free tickets, local event information and even little snippets like the recent post about a landmark I remember from my childhood growing up in Forest Grove .  The blog is full of information and is now included within my favorites.  I recommend you check it out.

Another postponed task is the “Part 2” of my conversation with Roxanne Black (now Black-Weisheit)—author of the book “Unexpected Blessings: Stories of Hope and Healing” .  It will be posted as soon as I dig it out of the drafts file of my emails, where it’s been sitting and (amazingly enough) never sent itself to her for review.  Go figure.  As soon as she gives the okay, it’ll get it posted.  The book discussion for February and March concludes this week officially, but the discussions on Shelfari.com are continuous. To catch all the discussions so far, click here .  If you don’t get the book we’re covering while we’re discussing it, you can join in later no problem.  Fortunately, I have been able to get the authors of the books to do open question and answer, so if you have any comments or topics you want to cover at any time, please feel free to join in. If you don’t want to join up officially, email me and I’ll do the work in getting your note out there for you (and anonymous is fine.) This book has been less of a discussion and more as a recommended reference book.  Those who haven’t participated in the discussions, but have mentioned to me through the other networks I (Ning communities, Facebook, Twitter) and emails, mention how they use the book as a quick source for inspiration or food for thought.  It is a light read, but one that can easily shed some ‘light’ on those days where all we seem to see is the dark. 

The next book discussion in April will be “Little Bee” by Chris Cleeve.  This will be our last discussion until Fall, as we will be shifting towards different seasonal activities.  This next book isn’t  lupus focused, but is about the enduring relationship forged between two women and the story that materializes from a single choice.  A couple of people have requested it and I have heard that it’s a good one.

You may also have noticed that we’ve added an email registration on the right side of the site.  This acts as a sign-up for events, workshops and target get-togethers, community social events, participation in the P.O.R.T program  and local research projects, and for future notices or invitations.  As I would expect from any site when handling my own contact information, your name and email information is never sold to any third party, nor will there be any marketing solicitations.  This registration is merely a means to connect with you out there both locally and nationally, to help build up our services and information data base.  Of course, you can withdraw your information at anytime by emailing me directly. 

With the weather improving (fingers crossed), I’ve had conversations with readers who are interested in partnering up for outings including quick walks, meeting up for coffee/tea, and other opportunities to get out to enjoy the Portland-metro area with individuals who have lupus or lupus-related illnesses.  MLWT partners with other chapters including the Arthritis Foundation Oregon Chapter , the Oregon Chapter of the Scleroderma Foundation , and a few local support groups including fibromyalgia and Living Well with Chronic Conditions , so the get-togethers aren’t limited to lupus only.  There are other social groups offering similar ‘meet-ups’ for activities, but there is still the concern about the varying degrees of ability we experience from day-to-day that the general group participants/leaders don’t account for (because they just aren’t aware, not because they’re clueless.)  Meetup.com offers quite a variety of opportunities.  I belong to the Portland Women’s Outdoor Club  and I really encourage you to join one!  Our P.O.R.T. program is a more defined social gathering designed for those who feel support groups aren’t for them.  Support comes in many forms and MLWT aims to provide as much variety in offering support opportunities for individuals to find the type that works best for them.

In addition to keeping these outings quick, and targeted towards the level of ability for that day, some of these gatherings will include a local professional or a  MLWT Guest blogger who will join in with the group as we do an activity and talk about topics within their specific expertise.  So, as a means to really sneak in the exercise we (I) often push aside, these local gatherings will incorporate a short educational aspect and opportunity to meet potential local health connections.  These new gatherings offer an additional benefit:  they connect participants directly to the outside community (and form the foundation for our P.O.R.T. program.)  So, even if you have limited energy or experience severe health challenges, the goal is to offer a variety of opportunities to help you bridge with others in-person, which is extremely important and necessary for our overall health.  Some of us have Skype, which is the ability to have audio and video when speaking with others through the internet, but that is still no substitute for the real thing (which we will be hearing more about that in future research, I guarantee.)

Finally, MLWT will be offering a class on a topic for anyone living with chronic illness (pending final review), a workshop on bridging our health and work selves, and specific products that are designed through collaborations with local businesses.  I’m currently completing some professional certifications that will be filling out the rest of this MLWT project in order to offer more specific support services.  It all seems to be taking awhile, which is why it is sometimes really quiet here regarding posts.  However, it is wonderful to be coming up on our second year and seeing this project become a more established community service.  I want to thank many of you who have contributed your time, expertise, energy and stories (locally, nationally and internationally).  You have been key in its fruition. 

As always, if you know of someone with lupus, who may have lupus or you yourself have lupus and want to make a health connection, the MLWT lupus “hub” is here to direct you to available resources within our  community.  Referrals are made only to area organizations, foundations, chapters and other professional sources who all have particular strengths to offer and take their missions about health and wellness very seriously. 

Whew!  Now, back to work.  Wishing all of you a wonderful week ahead!

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 .

Have You Experienced a Lifetime Cap on Your Health Insurance?

The Scleroderma Foundation is interested in speaking with scleroderma patients who currently have lifetime cap insurance policies and/or who have experienced a cap limiting their access to healthcare.

Individuals who fit the description(s) above are asked to contact Sondria Berman toll free at 1-800-722-4673 ext. 48 or by email at sberman@scleroderma.org to discuss a possible media opportunity.

 All candidates should contact the Foundation on or before Tuesday, January 12th.

 Thank You!