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.

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

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.

It’s been about 15 years now that I’ve woken up feeling hungover.  Sound crazy, or maybe like I have a “problem”?  I’m not in denial, I do have a problem, but it’s not with alcohol.  I have 4 problems, and they’re all under the ugly beast of “auto-immune diseases”.

Polymyositis

Sjogren’s Syndrome

Raynaud’s Phenomenon

Scleroderma

If that all looks like a list of strange and foreign words, it is to me as well.  I am not alone in the world of Lupus where each diagnosis is a unique and exotic mix that is specific to the patient.  Rarely does Lupus run by itself, it likes to bring along its annoying friends that are very difficult to recognize and diagnose.  After 15 years of doctor’s appointments, countless surgeries, and many unpleasant tests – this is my own personal exotic diagnostic cocktail. 

I won’t talk about each one, or what it means – because really, who cares?  What really matters is how each of these little gems affects my every day life.  Auto-immune disorders are very difficult to diagnose, because really it’s a bunch of inconveniences.  Unless you’re really in touch with your body, it’s easy to blow-off symptoms.  Just ignore them, and hope they’ll go away, until something really awful happens.  For me, it was my Lupus & Sjogren’s manifesting themselves in my lungs – which took 2 years of complaining to my PCP about a cough, 5 different inhalers, 3 X-Rays, 2 rounds of pneumonia, a CT scan and finally an open lung biopsy to diagnose active auto-immune disease rampaging my lungs.  I canned the PCP, lost 30% of my lungs to Pulmonary Fibrosis and am on an aggressive immune suppression therapy to quiet the chaos.  So what’s an annoying cough to someone else was life threatening for me.

After finding the right combination of doctors (I call them the “Dream Team”), I am feeling much more like my old self.  I’m not crazy about all the meds I take, but they really are making me feel better.  My voice is stronger (yippee) and my cough is not as frequent.  I have much more energy for my kids, and doing the things I love – like cooking and traveling.  Things just seem a little easier when you’re not struggling with huge organ issues.

What is living with auto-immune disorders really like?  To make it more real, I thought I’d do a little Facebook style list:

“25 Random Things About A Day With Lupus” 

I start every day with 8 pills, and take 3 more later in the afternoon when my stomach can handle it

I am always tired

The sun is not my friend, and I’m always covered up

Sleeping is hard, because I’m uncomfortable laying in one position

My skin is very uneven

I cough all day (annoying myself, and pretty much everyone else around me)

My skin is thick, so getting an IV is difficult.  On the flip side I have no problems with mosquitos

The skin on the tips of my fingers split at the slightest annoyance

I can’t be in a room with strong perfume or odor without breaking into a horrible (as in EVERYONE is staring) cough

I can’t walk up more than a flight of stairs without resting

My eyes are very light sensitive

Most days I come home from work & sleep for an hour before I tackle dinner

I am dry everywhere – I am never without a water bottle and lip balm

My muscles fatigue so easily, I sometimes have to blow-dry my hair in 2 installments.  My arms poop out too soon.

I apply sunscreen every morning

I have my blood drawn once a week to check all my organ functions

Noise startles me

My fingers turn wax white if I grab anything out of the freezer, so I need to be super quick

I wear mostly flip-flops, as the skin on my feet is so sensitive I get blisters after an hour in shoes

I leave for meetings early so I can sneak a nap in my car when I get there

I save my words – because if I speak too much (which is part of my job), I will lose my voice

My hands & wrists hurt all the time, so I have terrible handwriting

I can’t chew for very long, so bagels & power bars are out

I’m suspicious of even the slightest sneeze, as getting sick isn’t an option

Worst of all, I wake up every morning feeling hungover. 

If this list seems depressing, it’s not.  It’s the every day hurdles that so many people face in silence.  My life is full, and exciting.

I own a successful business, volunteer at my local school, am an active member in the Entrepreneur’s Organization (EO), have been married for 22 years and have two beautiful children.  If you met me, you would never in a million years guess I had any of these problems.

May is Lupus Awareness Month.  Do something special and sponsor someone for a local Lupus Walk .

Every donation (large or small) brings us closer to a cure.

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Maureen is one very busy gal!  She has a tremendous outlook on life that exudes an adventurous fervor, a thirst to learn and challenge herself – all tempered with a bright smile and great sense of humor.  Her business is Birdsall Interactive, you can find her on Twitter as @birdsall and on Facebook, too.  Check in on her – she’s a wonderful source for inspiration!

I’ve been dealing on and of with health problems since I was 14, diagnosed with fibromyalgia and lupus (or lupus-syndrome depending on the doctor) since I was 19.  In many ways, I’ve been very fortunate.  I had a few rough years from 19-22.  From ages 22-30 I coasted.  I took a very reactive approach to my health, thinking that if I ignored it, it wasn’t an issue.  I targeted issues as they arose: acid reflux, migraines, etc., etc.  And I felt the need to prove that I was in control, not my body, and I let the over-achiever in me have free reign.  I don’t think I did myself a lot of favors, but I made it through college, my first job, law school, another degree, a clerkship, and onto a professional career.  I learned a few signs that my body would try to tell me and I would listen to them, but I definitely took a reactive, not proactive approach to my health.  For instance, I learned that sores in the mouth meant it was time to take it easy for a few days or worse was yet to come.  But as soon as I got past that, I went right back to the regular routine and life. 

I managed, sometimes limping along, until really these past 6 months.  At that point the wolf inside reared its nasty little head and demanded attention.  I ended up in a fairly major flare, the first I’d had in almost 10 years.  Ignoring it didn’t work so well for me, and for the first time, I had to admit that I couldn’t do it, that I couldn’t just go on as normal.  While I know in my head that I wasn’t in control of that, it was such a blow.  I felt like a failure.  I’d spent so long convincing myself I was fine, that I was “normal” that I could do it all.  The day I had to talk to our FMLA coordinator was one of the most emotional, most gut-wrenching days, that I can remember experiencing in my adult years.  

From that point on, I decided to take a proactive, not reactive approach to my health.  I’m in a high stress, demanding career, which I’m not willing to give up on.  More than that, I realized I don’t want to feel that way again, when I don’t feel like myself at all.  If there was a way to help prevent that, I was willing to try.  I began to understand I couldn’t ignore the fact that I have lupus or that I have fibromyalgia.  I accepted that these issues cannot be ignored, at least not with good results.  So while I did the gamut of doctors and specialists these past few months, I also started looking into alternative medicines and taking a more holistic approach.  And I found myself, almost by accident, a community of support and understanding. 

I see a chiropractor (and have for over a year now), I started seeing a naturopath, and I started acupuncture.  I worked with the naturopath on supplements and diet and with her help, I’ve made some major dietary changes.  I kept a food diary and through it learned that I have issues with gluten.  Cutting that from my diet, while challenging, has made such an improvement in my migraines and other inflammatory issues that it’s hard for me to believe.  I’ve been able to go off the Ambien and the prednisone.  I still take a large number of supplements and I continue to work to change my eating habits.  I went off the birth control pill, which has been another positive change for me, with noticeable improvements in just the first few weeks.  The one area I still have issues with is pain management.  I see a massage therapist 1-2 times a month, my chiropractor at least weekly.

And then there’s the community.  Sites like this, twitter, blogs, people who know, who understand.  For the first time, I really feel like I don’t have to just deal with this internally.  If I have questions, I “tweet” them, or post them on the blog I started as a form of release and outreach, or I search other blogs and resources.  The support, the understanding, it’s been great.

Almost accidentally I found two women my age in my town, the wife of a friend and her children’s pediatrician, who have lupus.  We’ve had lunch a couple times, with plans for more. It’s not your typical support group, those haven’t been for me.  But it’s a chance to talk about what’s going on in your life with others who understand, without feeling like you’re whining, or boring someone with your health issues.  It’s a real-life version of my online community.

And I reconnected over the past year with another friend who has turned out to be such a blessing.  She has dealt with her own problems and understands from that perspective, and her mother has some of the similar issues I have, so she understands from that perspective as well. 

I know that I have people who care about me.  My parents.  My husband, while not really sure what’s going on I think, has been fabulous, especially since this is the first time he’s had to go through this with me.  I have other friends and family who are concerned and ask how I’m doing as well, and coworkers have been good too.  But while they care, it’s so hard sometimes to try to explain how I feel, or what’s going on.  I am so glad that they care enough to ask and to worry, but at the same time, I’m so glad to have found a group who understand the frustrations and the ups and downs that go along with lupus and fibro, without me having to go into detail.   I’ve come to appreciate the Internet in a whole new way, as it’s led me to a great community of people who understand, people who are supportive, and who just “get it”.  What more can you really ask for?

For now, I’m making my changes, taking my proactive stance, and working to continue with that plan even once I get through the worst here.  And when I need a bit of support in doing that, I know that there are people and places I can turn to online to find that support.  I’m hoping that maybe it will be another ten years before I have another major flare, but if that’s not the case, at least this time I’ll be more aware of what’s going on with myself and my body.  While I can’t control my health, I can control what I do about it.   

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JWZ (or Jennie) authors the blog, “ Taming The Wolf” and writes about “…the ups and downs of life as an early 30s career girl trying to balance the various demands of life, including fibromyalgia, autoimmune and dietary issues. Somedays  I succeed more than others, but it’s an adventure…”  You can also find her on Twitter as @TamingtheWolf.  Be sure to follow this great gal and learn more about her adventurous spirit.