(a) elderly

(b) undeserving

(c) disabled for life; and/or

(d) taking advantage of the system

Our social security disability clients are young and old, wealthy and homeless. And their “impairments” – the word that Social Security uses – include: Fibromyalgia, Parkinson’s, anxiety and depression, ischemic heart disease, degenerative disc disease, Lupus, cancer, asthma, chronic pulmonary obstructive disease, schizophrenia, bipolar disorder, traumatic brain injury, HIV/AIDS and interstitial cystitis, to name just a few.

I’ve never met a client who would rather receive disability benefits than feel healthy and be able to work ! Many of my clients could and probably will do some kind of part-time work eventually. Very few of my clients could be described as elderly.

But unfortunately, the labels I described above discourage many people from even applying for disability benefits and that’s a shame. It’s a shame because disability benefits can serve as a bridge to carry a person from one phase of his or her life to the next phase. If you’ve been diagnosed with a chronic illness and it’s reached a stage where you cannot work at your occupation right now, at least not on a full-time basis, disability benefits can help you through to another phase you may well reach – a time when you discover other interests and skills that fit better with the reality of your illness and allow you to return to work.

If you’ve been injured and it’s lasted more than a year and shows no sign of getting better soon, disability benefits can help you through difficult times until you’re able to resume your past or new work. And yes, in some cases, when you are not likely to ever return to work, disability benefits are your right.

Consider this – President Harry Truman, no bleeding-heart liberal, said of Social Security disability:

“It has long been recognized as an inescapable obligation of a democratic society to provide for every individual some measure of basic protection from hardship and want caused by factors beyond his control.”

If you are eligible for Title II, the Social Security Disability Insurance program, it’s because you’ve worked consistently and, by the way, you’ve paid into the system every time you’ve received a paycheck. If the benefits you’re eligible for are under Title XVI, Supplemental Security Income, there’s no shame in that. You’re in good company with people who, for various reasons, don’t have enough of a work history for the Title II program. Maybe they are mothers who have raised kids rather than been in the workforce. Maybe they are too young to have amassed the necessary work history. Maybe they are veterans who suffered an injury in service and haven’t worked since then.

Probably you’ve heard that it’s a long and frustrating process. There’s some truth to that but not enough that you should fail to exercise your right to access these funds. The first step is to contact the Social Security Administration and apply. The Social Security Administration (SSA) offers three ways for you to apply for Social Security disability benefits: by telephone (1-800-772-1213), in person at a local Social Security office, or online at www.socialsecurity.gov/applyfordisability/.

If you get turned down the first time (and nearly two-thirds of applicants do), don’t give up. File an appeal within the time period allowed. Get a lawyer to help you. Keep trying until you get to the hearing stage because this is the stage when many folks finally get a positive decision. And keep seeing your doctor – the evidence of your regular visits and the relationship you are building with your doctor will prove invaluable when your hearing date finally arrives.

Remember that the Social Security disability program was set up for the situation you are facing. President Clinton said it best:

“Social Security. . . reflects some of our deepest values–the duties we owe to our parents, the duties we owe to each other when we’re differently situated in life, the duties we owe to our children and our grandchildren. Indeed, it reflects our determination to move forward across generations and across the income divides in our country, as one America.”– William J. Clinton, February 9, 1998

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Cheryl Coon exclusively focuses her law practice on social security disability at all stages of the process, representing clients from Eugene, Oregon to Vancouver, Washington. She can be reached at ccoon@stc-law.com. Her law firm, Swanson Thomas and Coon, can be found at www.stc-law.com.

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As this network’s coordinator, I work at making connections with local professionals who focus on topics and issues I hear about most frequently from the MLWT community.  Recently, I received a comment recommending that I enlist the expertise of an attorney to contribute posts here regarding disability benefits.  I have met with Cheryl personally, as I do with many of the local professionals I have as guests, and must say that between her professional experience in this arena and her personal experience getting through the health care maze and building a supportive community for parents before social media, I believe she will be a great resource here.  As with any of my guests, please recognize that everyone must be their own best advocate and my guests are merely the people I wish to introduce to you~ not necessarily to endorse.

There are many diseases out there that are often ‘labeled’ as a “man’s” or “woman’s” disease.  When that happens, those who don’t fit the mold can find themselves in a gray area where their medical providers or even those closest to them minimize what they are going through simply because they are the wrong gender.  It is difficult enough for us to accept what is going on in our bodies, so to have the added scrutiny by those we reach out to help us get through our experiences throws into the equation some very stressful emotions.  When we are ill, we need to work towards healing and not spend valuable energy into meeting everyone’s expectations.

 I am pleased to say that Matt, author of the blog Matt and Lupus , has graciously agreed to start offering contributions that come from a guy’s perspective of having lupus.  Matt shares the belief that getting through some of our health challenges may not be easy, but is absolutely necessary in order to find our true potential and pursue important personal goals. 

Welcome him here and be sure to visit him at his blog, as well.

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Back in April of 2009, I was at work and felt a pain in my leg. I thought I just pulled a muscle and that it would go away after a few hours. By the fourth day trying to ease it, the pain got too bad and I had to call off work. I returned to work for another four days and then, once again, I had to call it off.  I finally decided to go to urgent care and see what was going on. I felt that if I kept calling off from work like this, I could risk losing my job. 

The doctor took one look at my leg and said that I had a blood clot and I needed to go to the emergency room. I had an ultrasound done and they told me that I had deep vein thrombosis and gave me a lot of blood thinners. After blood tests came back, I tested positive for the lupus anticoagulant antibody, one of the Antiphospholipid antibodies that cause problems in our blood’s ability to clot normally.  Then they did further blood tests and checked for full Lupus* .  I finally received a diagnosis and have been on blood-thinning and immune-suppression medications ever since.  I went through quite a bit recently, undergoing stent surgery  to open up the veins in my leg and finally ended up getting not one but two stents.  I went through blood transfusions, rheumatologists, testing out medications and was still able to return to work approximately one month after the whole crisis began.

I’m happy to say that I’ve been able to continue working full-time, four ten-hour days and, although I have had to make some adjustments to how I get through my days, I feel like I am now in a more grounded position in taking better care of my health. 

So far not too much of my life has changed due to this illness other than taking a lot of pills every day and not eating as many salads keep the vitamin K level low in my system** . I’m sure it will get worse over time my body feels every day, but I do not wish to stop living just because it becomes difficult or frustrating.  Sometimes I joke about getting full just on my pills a day that I realized that there are many others that have it much worse than I do and I am thankful that I have some understanding of what they go through.  

I am currently planning on returning back to college at least online complete my degree. I’m looking at a degree in business management with a focus on sales. I wish to become accessible working from home with affiliate programs, so that I can avoid being forced on disability from putting too much stress on my body at work. Although I may have pains every day is a big part of me that doesn’t want to stop. It might be my ego but I do not want to feel defeated. 

There is a point where we need to stop some things for the sake of our health, but I wish to push forward and continue to educate people on chronic illnesses.   I believe there is a great deal that I, and others like me, can still do. We just have bigger hurdles to jump over along the way. 

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*Lupus anticoagulant antibodies are one of several antibodies present in everyone.  Although it is identified with lupus, it does not necessarily indicate that you actually have lupus. 

**Vitamin K has blood-thinning properties and it is highly recommended that people who are taking medications to treat clotting disorders (including aspirin, Coumadin, Warafin, etc.) diligently monitor food in their diet with high Vitamin K content (such as dark, leafy greens).  Be sure to speak openly with your medical team about your daily diet and develop a plan for your particular situation. You can also learn more about foods with high Vitamin K content here .

I live with lupus.  I work with and learn from people who are living with lupus or other illnesses that often share similar medications, experiences, doctors, and challenges.  I have a library of books, hundreds of files, materials from trainings and conferences, have a multitude of websites listed in my favorites, have worked directly with patients and health professionals, and have participated (at one time or another) in more than 12 social networking sites.  I have lived and breathed lupus and illness for many years, all the while discovering that there is always more to learn.  One would think that I would be bursting at the seams with some common ‘lupus’ sense.  Apparently not.

Do any of you remember, when you were kids, the Highlights® Magazine  you could find at the doctor or dentist office?  You may see them now, if you’re taking your own kids to their appointments.  In this magazine (and now online) , there is an illustrated picture  where you are instructed to find a list of hidden items.  Some are tough to find, but others are right out in the open, thankfully.  I remember being pretty frustrated when I could not finding certain items, only to realize I had been looking at it the whole time.  This post, too,  is about things that appear one way on the surface, but when you look more closely, you will see things aren’t as they should be.

On the surface, you might think that growing a garden and eating fresh vegetables are good things.  You might also think that I always make the right choices,  since I do health support services as a profession. If you look more closely, however, you will notice some big errors in judgment that I am ashamed to have made, both as that professional and as a lupus patient.  At my age, and at this stage of the game, there are no excuses. I know that you may not see some of the things I am about to mention.  This is where my personal accountability will come into play and I suspect there are many of you out there doing the same thing.  Let’s just put it all on the table right now. 

This picture shows me out there harvesting – at noon, when the sun is at its highest.  I’m out there without sunscreen.  I’m wearing a top that, quite frankly doesn’t cover enough of me in any way shape or form (I really need to either tone up or toss it out.)  My mouth is usually wide open when I harvest the beans and peas, aggravating my symptoms similar to Sjogren’s.  According so some nutritionists, I’m surrounded by tomatoes, that are considered to have inflammatory properties and may cause some people with lupus more trouble than they’re worth.  Well, this person isn’t going without her tomatoes, otherwise her temper will show some inflammation.  It is something to consider, though, when you are trying to gain some management in your flares.

This picture emphasizes what you don’t see.  No hat to shade my face. No water bottle to stay hydrated.  No one helping me do the work.  No thermometer to show me that it was already in the 80’s.  No time out break – I know it’s a small space, but you’d be surprised how long it takes to water and harvest this little patch!  That leads me to my last point in this hidden picture that isn’t so hidden: I have no energy to keep standing, because the sun and heat are already getting to me.

The good thing about this goof up is that I can easily fix it.  Not all things about lupus are that easy to remedy.  I can get out there before 10 am or after 5 pm, when the sun begins to ease up.  I can take a little shower caddy out there with me including a water bottle, sunscreen (to reapply when needed), a little thermometer to check the temp, a light-weight T-shirt to have in case I’m out there longer than I should be, and hard candy to keep my salivary glands active and mouth closed.  I can get a hat that can hang around my neck to remind me to wear it.  I can get a little stool to put out there when I get a little dizzy.  I can ask my two daughters to take some time and help me, giving us a chance to be together and talk. 

When we feel good, we forget.  When we hurt, we remember and curse ourselves for forgetting.

 These pictures show how I only have myself to blame when ( not if ) I feel like crap tomorrow.  Even with all my experience, I still struggle to keep my lupus hidden.  By bringing out my experience and knowledge about what I need to do doesn’t translate into being labeled as “sick” when I’m having good days.  When I’m not ‘at work’, I still need to be willing to acknowledge my responsibilities to my health.  Being able to be out there and by doing things right creates my chosen picture of health.  That is what helps keep things in the right perspective and me still growing.

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.

Today, BloggersUnite is hosting an online event entitled People First: Empowering People With Disabilities .

I’ve been having unusually prominent symptoms from my lupus.  I always anticipate a little trouble once the sunshine finally arrives here in Oregon, but these are symptoms that I haven’t had or remember having for quite a few years.  Naturally, my first concern is that my kidneys are in trouble.  The rates of kidney involvement for us with lupus averages about 50%.  I’m one of the lucky ones where it went straight to my kidneys to begin with, and I do mean lucky.  Since there isn’t much to do for my lupus via medication, having the back up of dialysis and decades of kidney research gives me a sense of assurance for a ‘Plan B’.  Of course, it is a moot point since it doesn’t do me much good without medical insurance or a nice nest egg to pay for it.

So, my imagination has been going wild with concerns of clotting and strokes, MS, CNS involved lupus, and so on.  It’s amazing how much panic I can stir up when my body sends me the signal that something is amiss, no matter how truly insignificant.  Clearly, I do not appreciate all that I am blessed with health-wise, if I can be derailed this easily.  What a baby. 

I know some amazing people living with much more challenge, heartache, spirit, grit and courage than I do.  I am honored to have these friends encouraging me to take what life throws at me and who always teach me something about my perspectives, judgments and biases, character and life, as a whole.  I don’t want to learn how to make more excuses or whine about my supposed bad luck.  I want to learn to be strong, and my friends (who I feel deserve to have their abilities mentioned rather than their dis-abilities) have a particularly keen ability to get me off my lazy tail end and try harder.  It is these friends I want to honor today and thank them for making my life more interesting, fulfilling and humbling.

I want to quickly mention a few websites that I visit as often as I can, to learn more for my friends, myself and my family. 

Disability Studies, Temple University  features exceptional writers, topics, information and many more notable blogs or websites to visit.  I am not living with a disability, but always leave this resource with something to consider and someone to learn more about.  

Lupus has been included under the ADA guidelines of disabling conditions or diseases.  However, the protection within the workplace or even within the medical community seeking/maintaining insurance coverage is still pretty vague and inconsistent.  If you are in a situation at work where maintaining employment has become a problem due to your chronic health challenges, I highly recommend you check out my friend and chronic illness coach, Rosalind Joffe .   She is a wonderful resource for anyone living with a chronic condition who wants to succeed in finding their place in the workforce.  I’m currently going through her workbook that compliments her book Women, Work, and Autoimmune Disease:  Keep Working, Girlfriend! that I have reviewed here Here are a couple of her blog posts that address disclosing your health, your rights to learn more about and some recommendations. 

Job Interviews and Disclosure

Insurance benefits and Disclosure

Also, for anyone looking for more information about advocacy for chronic illness disability, here are some additional resources we know for you to check out: 

National Resources

Advocacy for Patients 

US Department of Labor  – Office of Disability Employment Policy

Oregon Resources

Disability Rights Oregon  

Disability.gov 

For Oregon Employers

Oregon.gov FAQs regarding disability in the workplace  

If you know of other online or Oregon resources, please be sure to leave them in the comments section here.  We are always looking for more to add here on the website.

Here’s to emPOWERing all of us~ we all bring something to the table.

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!

Nothing brings home the challenges of stiff, achy joints and limited mobility quite like the dampness of a good Oregon winter.  We’ve been fortunate here so far in not stepping into that season full boar yet, but we know it’s coming.

Today, awareness is upon those daily challenges for people living with osteoarthritis and all the other forms of arthritis as it applies to their experiences in the workplace. There are a number of bloggers (one fav is Rheumatoid Arthritis Guy  ) and other resources speaking on this topic, offering insight, tips, information and additional resources that we strongly recommend everyone read.  Even if you don’t have this leading cause of disability in the U.S. (yet), there is undoubtedly someone you know who does and may benefit from you understanding it better.

Two must view links today are:

The Arthritis Foundation website

Their World Arthritis Day page offers up some specifics about today’s event, what osteoarthritis is and the how it is reflected in the workplace.  they also offer some extensive resource links for more information.

World Arthritis Day website

    This is the main website for the event that includes all forms of arthritis and rheumatoid diseases as a whole in their efforts to support patients. Their theme today and for all of 2009 is described below directly from their website:

“This year’s ‘Let’s Work Together’ theme considers the challenges of work, be it paid employment, voluntary work or work at home supporting a family, and embraces people with rheumatic diseases, healthcare professionals and employers.”   (Source:  World Arthritis Day website) 

On their site, they also offer results from the 2009 survey that show:

1)  the need in furthering awareness building efforts to continue in the workforce to allow for continued, supported employment options;  and

2)  state and legislative backing to encourage more adaptable/flexible working environments 

The survey is still open and you are encouraged to participate – just follow the link on the page and give your voice to today’s event.

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Even though the spotlight is primarily on arthritis in the workplace, I want to put a shout out for a local PNW event to celebrate and benefit the young patients living with arthritis.

CARRA (Childhood Arthritis & Rheumatology Research Alliance) is holding their annual CARRA Costume Ball on Saturday, October 17^th  in Camas, WA.  This event includes food, music, dancing, games and more and is open to all ages.  The party will be held at Prune Hill Elementary, 1601 NW Tideland St. from 6-9pm.  Tickets are $25 per family and proceeds go to furthering research and support for our young ones who are often overlooked when we think about living with arthritis.  Visit their website for more information.

Wishing you all a more flexible and less painful day today – stay warm!

I want to send out a warm-hearted “Thank You! “ to all of the wonderful people who contributed to our first annual “Our Voices for Lupus Awareness” guest blogging event this May.  We heard from several readers who found something they could relate to in living with illness themselves through blog comments, sites like Facebook and Twitter, emails and direct calls.

They stated that they feel inspired to take on new personal goals or aspirations including entrepreneurship, travel, creative endeavors, gratitude and service work, or to simply to take another look at lupus as less of a barrier and more as only part of their entire picture.

We anticipate adding to these themes by continuing our ‘open’ invitation to contribute here for bloggers, writers, patients, service workers, family and friends, medical providers and so on from the Pacific Northwest and beyond.  We also hope to expand to other themes that weren’t covered in May and look forward to reading and learning from all of you.

Although we had a few people from Oregon and Washington contribute to the dialogue, we are definitely aiming for more.  It is important for MLWT to hear what those of you locally are seeking and interested in regarding building your health support resources network.  From these communications, research, social and educational opportunities can form ~ some are already set for this Fall, based on discussions from our first year of operation.

If you missed any of the guests during last month’s lupus awareness event, here is a listing of these great friends below and we really encourage you to take the time to get to know them.  Some are artists and craftspeople. Some are creative career people managing their health as they pursue their passion.  A few are professionals who either work within businesses or service programs aimed to support individuals with health challenges within employment, policy or independent living.  There are a few authors who have books to offer encouragement, guidance or introduction into a life with a chronic illness.  Most importantly, every writer from the event last month offers practical tips, insights and personal experience in adjusting to health challenges.

We had a wonderful variety touching on so many aspects in living well~ and we’re honored to have hosted these writers:

MLWT 2009 Lupus Awareness Month Guest Bloggers in order of appearance:

Christine  Eco-fashion artist , authors  Lupus Girl (blog), owns Windy Hill Fibers (business blog),  Windy Hill Fibers (etsy.com), @windyhill (Twitter)

 

Kim Nault  Patient advocate thru Lupus MCTD Foundation , Poet/Essayist, radio blog host , @LupusMCTD (Twitter) 

 

Tonita Webb    LFA- Pacific NW Chapter Board President , @LFAPNW (Twitter)

 

Carolyn and Jerry Glein   Directors of  My Lupus/Fibro Support Group , editors of their international newsletter and MLWT Advisory Team Members,  @MYlupus (Twitter)

 

Kathy  Tech grad, ME/CFS Advocate, offers vintage items on Tangelobaby, @tangelobaby (Twitter)

 

Doug Franklin  Artist, MLWT Advisory Team Member and Vocational Rehab/Disability Specialist

 

Denice Beal  Author, Artist and on-going MLWT Guest blogger

 

Leslie Rott   PH.D Student, Univ. of Michigan , chronic illness advocate and speaker, authors blog Getting Closer to Myself 

 

Jennie  30-something career girl extraordinaire, authors her blog Taming The Wolf , @TamingtheWolf (Twitter) 

 

 Maureen  entrepreneur  Birdsall Interactive ,  @birdsall (Twitter) 

 

Marilyn Morris  Editor, Author    One of her books Diagnosis Lupus: The Intimate Journal of a Lupus Patient and blog The Lady with Lupus

 

Rosalind Joffe  Chronic Illness Career Coach (cicoach.com), Author of her book Women, Work and Autoimmune Illness: Keep Working Girlfriend!  and her blog Working with Chronic Illness , @WorkWithIllness (Twitter)

 

Kathryn Heatherly  Ph.D candidate, Vocational and Rehabilitation Specialist serving Oregon and SW Washington, on-going MLWT Guest Blogger,  Contact her at 1 (888) 355-5539 or by email at kheatherly@1hcc.net 

 

Jessica   world-traveller , authors her blog Notes from the Garden Spot of the World (link),  @gardenJess  (Twitter)

 

Sara Gorman  New Mom, author of new book Despite Lupus: How To Live Well With a Chronic Illness , her website/blog Despite Lupus  @despitelupus

We are so inspired for 2009 here at MLWT – are you?  Carpe Diem!

“I appreciate the opportunity to share some of my background with your members who may need representation for matters concerning Social Security Disability (SSDI) and/or Supplemental Security Income (SSI). 

 As a certified rehabilitation counselor for over 27 years, I have been engaged in private practice in Oregon and Washington since 1980.  I am also a licensed professional counselor with the state of Oregon, as well as a certified disability management specialist.  I have extensive experience as a Vocational Expert with the Social Security Administration (SSA) and am certified by the Department of Labor to provide vocational services to federal employees.

In 1995,  I became a Vocational Expert with the Office of Disability Adjudication and Review (ODAR) with SSA.  In that role, I gained valuable experience providing testimony to assist the Administrative Law Judge (ALJ) with determining whether folks were able to work, under SSA regulations.  After over 13 years as a VE for SSA, I followed the counsel of several ALJs who recommended that I begin representing clients in their applications for SSDI/SSI. 

Most all of my clients are reassured to have access to an actual counselor who is well acquainted with the process upon which the disability determination in SSA is based:  ability to work.

I have extensive experience working closely with clients whose diagnoses include lupus and fibromyalgia, conditions that require the expertise of a professional who understands how the resulting symptoms so often prevent many people from sustaining work.  For many of my clients who suffer from these diagnoses, the real challenge is not found in getting a job, but in keeping the job. 

I have just completed my coursework for my doctorate in Human Rehabilitation, and look forward to concluding the dissertation requirement for my PhD in about a year.  While this credential certainly isn’t necessary or required for my work as a representative, many ALJs recognize the degree of proficiency afforded by years of such study.  It will be a powerful and respected credential for my clients who deserve the best representation available.

I serve clients throughout Oregon, Washington and Idaho and may be reached toll free at 1 (888) 355-5539 or by email at kheatherly@1hcc.net “

I recently had a chance to interview an author and fellow lupus patient, Marilyn Morris, who I thought would be a great addition to the wonderful writers we’ve had this month for our awareness event.  As an accomplished writer and someone who entered a life with lupus on the later side than usual (at 50 years of age), she exemplifies a commitment to herself in staying true to her passion for storytelling in the face of her challenges with lupus.

Marilyn had already established herself as a talented writer before she began noticing some changes in her health.  Like many, she didn’t have the traditional “butterfly rash” or any of the skin lesions often found with discoid lupus.  She did, however, find herself with the other more common problems with being very tired and sore, particularly in her joints:

“I woke one morning with my hands so swollen I couldn’t make my morning cup of coffee.  I noticed that all my joints were swollen, red and hurting. I began feeling extreme fatigue, too.  It was a few days before I finally decided to go see my doctor, who guessed it was just rheumatoid arthritis (I was 50, after all) and prescribed arthritis meds.  But they didn’t work.  So I began searching for answers.“

Fortunately, Marilyn was persistent and committed to taking care of herself.  She is also a writer and editor, which means she has a tendency towards researching topics thoroughly.  I was interested to hear more about how her diagnostic experience went, knowing that this pursuit of a story may have influenced how she achieved her diagnosis:

“It took about three years and five doctors.  All the time I was working, feeling awful, losing jobs due to my lack of concentration, calling in sick, etc. I was told repeatedly that it was “just” RA, and I knew it was not, since none of the meds were working.  Finally, I was referred by my new, female PCP [Primary Care Physician] to a rheumatologist literally next door to her. He took one look at me, asked if I had any Native American in me, and I said yes. My grandmother was ¼ Indian.  He had practiced at the Indian School in Lawton OK so he knew lupus when he saw it.  The ANA test came back positive.  I said, “Thank God.  At least we know what it is and we can treat it.”  He said my reaction was typical of lupus patients.”    

Upon receiving a diagnosis, we all know that it takes a little while to sink in.  We begin to worry about how much our lives will change and what this illness will mean for our futures - especially if this is the first time we have ever heard of lupus.  For Marilyn, as a writer, this new pain in her hands and intense fatigue could have very well affected her ability to continue and I asked her to offer us little more about what her thoughts were regarding lupus, her writing and her future: 

“Some of the older literature and old wives tales had me doomed in a very short time.  I was told by my rheumatologist to ignore all that.  It was serious, but treatable.  My grown children were more concerned than I was, of course.  They didn’t have the information that I had. I found a Lupus Support Group in the area and attended meetings regularly.  I volunteered to help with the annual seminars, etc. and for a time became the co-facilitator of our local group.  I also use the Internet a lot, and lupus support groups online.  

I was a writer from the time I could make letters on Big Chief Tablets in kindergarten.  As an army brat, raised all over the world in sometimes-isolated military compounds, I learned to entertain myself by writing stories.  I always wanted to be a writer, but my “serious” writing was delayed until I quit working in 2000.  Retired. Writing.  Two sweet words!  

I don’t think my lupus ever affected my writing, aside from a few physical problems, such as carpal tunnel syndrome, and wrist splints and a trackball mouse took care of that.  I still drew on my imagination as I had in my childhood, for inspiration for my writing.  My first book was a supernatural mystery, Sabbath’s Room, that I had had in the back of my mind for years.  Next was my autobiography called Once a Brat.  Then came my lupus book.”

Her book, Diagnosis Lupus: The Intimate Journal of a Lupus Patient (2005), stemmed from her journal writing as she began transitioning into chronic illness and she shares a great deal of her personal journey.  It has been listed as one of the books the Lupus Foundation of America has recommended reading for all lupus patients.  Her publisher comments:

“Far from being a litany of complaints, the author’s pages reveal her unexpected spiritual growth and gratitude for life itself, and she hopes she can be of help to others who suffer from this disease or other chronic illnesses.” 

I asked her what led her to write about something as personal as illness and what her goals were for the book:

“Many of the books I had read on lupus were written by medical professionals, and bless their hearts, they were so dry and clinical I got nothing out of them.  Or they talked down to me, as if I were a child.  On the non-medical spectrum, too, I found a couple of books written by lupus patients who dwelt too long on their symptoms, with a “woe-is-me” approach, and one book angered me so much I threw it across the room.  The author was a married woman of great financial means, who sobbed about little things, while I was struggling with the same disease, single, and most of the time, unemployed.  Give me a break, I thought.  That may have been one of the reasons I decided to share my journal.   I hesitated to let other people know “the real me” warts and all, and about my self-doubts, anger at God and society, and particularly, the medical profession!

I wanted to share my experiences with others who might be going through the same search, having the same fears, doubts, anxieties and anger that I had written in my journals.  Each day, I wrote my feelings in a series of journals, chronicling my progress, or lack of it.  The good, the bad, and the ugly.  I hesitated to tell others that I was angry with God, with others, and with myself, but I realized I probably wasn’t that unique, after all.  So I chose pages that represented all those facets of lupus, and sent them to my publisher.”

I then asked her how the LFA came to know of her story, how she sees the level of awareness now as opposed to when she first wrote her book and what she would recommend to others who are thinking about writing their own stories: 

“I noted in one of the Lupus Now editions that the Education Committee was looking for books about lupus to recommend to their readers.  They wanted reviewers, so I reviewed one for them, and asked them about my book possibly being included.  They asked me to send three copies; they would review it and get back to me.  And then I got the endorsement as “Recommended Reading.”  I was thrilled.  Incidentally, half the royalties are donated to the LFA.” 

Regarding awareness,

“No real progress, I think. Really.  Any time I mentioned the fact that I have lupus, I heard, “What’s that? I’ve never heard of it.”  And I’d tell them, briefly.  Their eyes would glaze over and sometimes they’d say, ” But you don’t look sick!”  Or, if they have some idea of lupus, they’d reply, ” That’s kind of like arthritis, isn’t it?”  

And, it’s the same, some 20 years later.  The same responses.  That’s not good.  So many diseases get so much attention, I feel like I have the Rodney Dangerfield of diseases:  “I don’t get no respect.”  Because I’m not in a wheelchair, or look thin and gaunt, or have any visible “differences” like a limp, or lack of motor control as in Parkinson’s, people look at me like I don’t have a “real” disease.  And, because we’re mostly female, the perception still might be “it’s all in your head.”  Public perception needs to change, for sure. 

For people who feel a story within themselves, …

“At every book signing, I have someone who sidles up to me and confides, almost in a whisper, “I’ve always wanted to write a book.”  I smile and then tell them, “Do it! Tell your own story.  We’re all different, and there are no original plots.” They then look like a deer in the headlights, frozen at the thought of actually putting their dream into motion.  But a best seller won’t sell if it’s in your desk drawer. Take a chance.  You might be surprised.  

I found writing to be therapeutic; I didn’t have time to think about what was happening inside my body.  If you have a book inside you, let it out.  I’ll be happy to help.”

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Marilyn offers her contact information at marilyncmorris@sbcglobal.net  and  through her blog, www.theladywithlupus.blogspot.com.   Her lupus book can be found/purchased using our Powell’s and In Other Words links on our blog on the far right under ”Shopping” .  Please check out her other books as well and let’s let her know how much we appreciate her story, her encouragement and her contributions to bring more lupus awareness, one word at a time, to our communities.