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.

Last month, I went on a hike through Tryon State Park with my new friend, MLWT Guest Blogger and Acupuncturist, Becca Seitz .  Despite my constant and intense headaches weeks prior, I felt the need to get outside and move.  Preferably with someone to talk to and in beautiful surroundings, which Becca and Tryon Creek provided effortlessly.  During our walk, I was telling her about my headaches and being buried under a great deal of stress.  I had several theories for my throbbing temples ranging from lupus (of course) to changing barometric pressure.  She shared with me some philosophy, which I plan on hitting her up for in a future blog post, that struck a chord in me and I’ve been mulling it over daily since our walk. 

She explained that this philosophy (I believe it is within Chinese medicine) describes a symbiotic relationship between us and trees that involves an exchange of stress.  We often hear how detrimental stress is to our health and wellbeing, causing all sorts of problems within our own bodies and spreading to other peoples’  ‘bodies’ we share our days with.  What we don’t always consider is the wood element in Chinese medicine, also present in Western pharmaceuticals.  Trees have been a part of treating illness for centuries when it comes to medicine, but there is more to that relationship than just the ingredients of the bark we absorb.  The trees are believed to absorb from us, too.  Becca brought up how stressful conditions actually make trees stronger and, if you garden at all, you know to not to tie up your new tree seedlings too tightly to their pole.  The movement from the wind and other forces actually strengthen the trunk during its development .  As we walked along the path through the trees, we spoke of this wonderful idea about unloading the stress we have within us during our walk to make us healthier and that, in turn, we could actually be benefitting the trees around us by making them stronger. 

I’ve been pretty frustrated with the weather here this Spring, as I suspect many of you have been, too.  I thought that it could be because I’m back to sitting in front of the computer for longer periods of time working on several big projects.  Maybe it is because of the gray skies leading to my darker moods, aches and poor sleep.

It could be that I just miss time with my friends and trees, my fellow stress magnets. 

This weekend promises some heat and sunshine, and not a moment too soon. My oldest daughter is graduating from high school and she will be the first to be leaving the nest, so there has been some stress building up within me over that, too.   I know I will be hitting a trail as soon as possible to relieve some pressure and make something good with it, or I will undoubtedly explode. 

Today, I came across a link that leads the reader through a meditation linking trees with de-stressing .  I did it and, surprisingly for me (I don’t like meditating), I actually felt great afterwards. I’d put it here, but haven’t yet figured out whether I need to gain some permissions in writing first.  There’s something else to stress about!  The gist of it is just to stretch, breathe deeply and move gently as if responding to wind.  You can take it from there, but it isn’t anything new.  Just be sure to recognize your own limitations and don’t push yourself too hard.

Wishing all of you a more gentle breeze today and a wonderful weekend~

The thing about pain is that when you don’t have it for awhile, you really do forget what it is like to live with it.  I’ve been so fortunate to have made it through the pain I had right before my diagnosis and left it behind for nearly a decade.  I am grateful for every day, believe me.  I know that there are so many out there who are begging for a month, day or even hour without being held hostage by their bodies.  When my headaches started in, I first blamed lack of sleep and intended to tough it out without meds.  By the fourth day, I was taking any sinus, cold or allergy pill within reach.  I gave in to the pounding temples, throbbing eyeballs and the sharp jolts of pain that felt like what I only imagine an exploding vessel would feel like.  However, the worst thing wasn’t about having to take the pills or even having the pain again.  It was being reminded that my life can be brought to a complete stop whenever my body demands it.

While my head was exploding, I felt like I couldn’t do anything.  Read, spend time at the computer working or goofing off on Twitter, watch TV or sleep.  I couldn’t plant my garden or catch up on any house chores because bending down and moving around just made my head hurt worse.  I was just stuck sitting and fuming about the prison term I was being forced to serve without any explanations.  Living with an illness can get like that and I was seeing myself as unproductive, not getting to the things that I knew I wanted to do. 

 The challenge, though, went beyond the pain as I began to truly notice my response to it.  I realized that the things I do most often were those things I couldn’t do during my body’s rebellion and it left me aware of how limited my coping tools were in a ‘pinch’.  My head was pushing me to step outside the ‘box’ and force me to explore some new skills. 

 I brought out my art supplies, took walks, made soups and had long talks with my daughters. The third day into it, I noticed no headache until noon, then 3PM, then a day without and so on until now, where it’s been three pain-free days.    

This month is awareness month for many illnesses that involve chronic pain such as Fibromyalgia, Arthritis, Lyme disease, and, of course, Lupus.  Every day, there will be bloggers, news research articles, internet conferences and radio programs, ad campaigns and updates/tweets on the popular social networking sites.  Awareness isn’t limited to online activity either.  For example, The Pacific NW Chapter Oregon Branch is holding their walks this month (http://www.arthritis.org/chapters/pacific-northwest/events.php).  Also, this weekend, there will be a local health event here in Portland hosted by the Jewish Family & Child Service.  ”A Day of Empowerment, Solutions, and Support for Individuals with Acute or Chronic Illness or Disability and their Friends and Family ” will be held on Sunday, May 16th, from 10AM to 2PM.  For those of us who are struggling with our health, this event offers a variety of presenters and exhibitors (including MLWT as both) to help find some supportive resources.  For us like me, who are blessed with having more of our time pain or challenge-free, it is a valuable reminder of how we still have to prepare for when our bodies rebel.  Living well is grounded on strengthening individual empowerment and, even though we may never be able to control our pain or symptoms completely, we can control our responses to it.  Not simply by thinking more positive, but being willing to think outside your own box.  

Hope to see you this Sunday~ it looks like there will be some great presenters and exhibitors to explore.  MLWT Guest blogger and new parent support practitioner, Sarah Nuxoll, will be sitting with me at the MLWT table enjoying the event, too.  Stop by and say hello~

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

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

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

2. The Pilates will be tailored to scleroderma patients. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It seemed like a good idea at the time.

I picked out a beautiful 2000 piece puzzle of Neuschwanstein Castle in Germany for my mom this year for Christmas.  It has been years since I did one and thought that it would give us something fun to do together.  The together part is working out fine, but the “fun”?  We’re still waiting for that to kick in.

As I painfully search for pieces with the exact patterns, shapes, images, etc., I hunch over a disaster that frustrates me into a punishing backache.  I have it set up on a table in our house that takes up the most part of our family room.  There is no way to walk by the thing without looking at the embarrassing lack of progress and returning to that hunched position with a dire need to redeem myself by finding “just one more piece.”  After about an hour of work and 15 minutes of trying to stand up straight, it occurred to me that this death wish of a ‘gift’ feels uncomfortably familiar.

The new year is upon us and, although I resist at the start, I usually end up with at least a few ‘resolutions’ or goals that I put out into the Universe hoping I make my way to them within the next 365 or less days.  “Hoping” is the operative word there.  Every year, I tend to look at the entire year all at once, in all of its possibilities.  And, every year, I find myself overwhelmed with all of the work involved.  Unlike the puzzle, I shudder recognizing all the pieces of my life floating around looking for a place to belong.  I lose steam quickly and create some pretty amazing excuses, distractions and impressive cases of sudden amnesia—all in an effort to completely avoid getting anywhere in my big picture.

The thing is, my life is consumed by these unmet goals or resolutions just like that table is fully present in my family room. I can’t get through a day without noticing how little progress I’m getting to something that really could be beautiful, too.

Now, this doesn’t mean that I don’t accomplish things, because I certainly do.  What I’m not happy with is that they aren’t the ones my heart is aiming for and are often downsized for various reasons.  For the last two years, I’ve come up with some general goals allowing myself to ease up on some of the pressure in completing them.  That hasn’t been working out.  I’ve noticed lately several people talking about choosing only one word to focus on for your year, giving yourself something to look for in every day whether it be peace, joy, laughter, gratitude, and so forth.  The only work would be to find something in every day that reflects the word you choose.

I don’t trust myself in doing that.  I have been generally stating goals such as “better health” or “get in shape” thinking that they cover the bases. In reality, they leave me off the hook and unmotivated.

Perhaps I just need to focus on a visual reminder to get me through this year.  Puzzle.                                                                 (image: Buffalo Games)

This year, I chose only five goals that I want to see myself accomplish and complete.  I am viewing each goal as if it were a part of a big puzzle.  With Neuschwanstein, I am breaking the whole thing down by working on the sections of the picture: castle, lake, and branches.  With my goals, I’m using the same process and one that is recommended whenever we put together our action plans to address personal goals.  By having objectives that are specific and measurable, I’ll have direction, more focus and know when I’ve completed the tasks.  That will eventually make up the goal, because each image will become clear with every piece I place.  One of my five goals is still about improving my health, but I think I’ve come up with a more targeted action plan and already see positive progress.  Eureka!

One objective I’m using to measure my progress this year to “Build More Health Opportunities” (both for this project and myself) is choosing resources that get me to be more physically active and outdoors.  My current gym membership—you know, the one I made a big deal about starting last year?—expires in March and I’m not going to admit to you how many times I actually ended up going.  Let’s just say they were pretty darned expensive workouts.  The good news is that I do better with actual deadlines imposed on me by others AND I’ve found a way to integrate the gym experience more into my daily life.  That’s a whole ‘nother post, though.

This past week, I went to my first PDX Meetup.com group called Portland Women’s Outdoor Club .  The registration for this group grew so quickly and, I suspect, will continue to do so, as many of us celebrate in the realization that we can find others at similar physical and skill levels to motivate us to get out there.  There is a great mix of skill levels, interests and ages among the women who attended the first meeting.  I was happy to hear that the activities that I want to take part in more often and learn for the first time were shared by the majority of gals there.  Beginning mountain climbing/repelling, hiking, backpacking, and snowshoeing (although I really need to work on my stamina for that one!).  It was easy to find someone who had a lot of experience in this group in these particular activities who could lead the rest of us newbies.  There are also some pretty creative gals in coming up with some other options when the Oregon winter just isn’t something we feel like experiencing.  I haven’t gone to one of the activities yet, but my curiosity is peaked about this Wednesday’s gathering to learn how to make a coke can alcohol stove (for those ultralight backpackers  in all of us.)

 I will go ahead and cross this objective off, because I’ve signed up with an opportunity and met some of these gals—my biggest hurdles.  I am really excited and encourage any of you locally to check this group out.  The more people, the more options, more opportunities and all the more likely I will take part.

I hope to see you, too!

For many of us – patients, parents, spouses/significant others, siblings, employers, medical providers (yes, even them)- it is sometimes difficult to fully express ‘what is going on’ from our perspective.  Since we cannot truly live with or work with an illness completely independent from others, we need to find and use a variety of communication tools that work for a variety of situations.  This program is one of those tools and the beauty of it is in how you can use it yourself and/or along with a facilitator.

If you, or someone you know, is living with illness, (specifically lupus or lupus-related conditions/diseases/syndromes) and has about 1-1.5 hours to offer their insight, critique and suggestions in the developmental process, please contact us here on our blog, direct message me through Twitter at @mlwt_lupus, or email me directly at maria@mylifeworkstoday.com. 

The only specific requirements include:

• a diagnosis of lupus and/or lupus-related illnesses such as:

SLE – all forms

Fibromyalgia (often associated with lupus patients)

Antiphospholipid Antibody Syndrome (APS) and forms of vasculitis

Connective tissue diseases such as rheumatoid arthritis (R.A.),  polymyositis-dermatomyositis (PM-DM), systemic sclerosis or scleroderma, Sjogren’s

• or a direct and personal involvement with someone living with illness
• live around the Portland Metro area north I-5 to Vancouver, WA (or at least can meet there) and south on I-5 to Salem (again, or can meet there).

This is a voluntary program and not designed to cause any discomfort. You will have the option to withdraw from the pilot at any time.  The process and results will be based only on the information you are interested in contributing, however the more you put into the process, the more all participants will gain from it.  The information shared for the pilot program will be kept strictly confidential and not shared with anyone outside the session. 

Thanks for any help you can offer in getting this pilot up and running. Feel free to contact me if you have any concerns or questions about participating.  We appreciate your interest in finding new and innovative ways to live well and this pilot will give you an additional opportunity to define life with lupus in your own terms~

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’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.