My goal for the latest library excursion was to pick up references to begin Fall prep on MLWT Target Practices, some new classes and to catch up on writing those over-due articles.  What I ended up leaving with was a book, found by accident, and an absolute treasure that I want to share with you today. 

Reading and writing daily about life with illness can sometimes be, well, depressing and too close to home.  Yet, I struggle with reading fiction while the deadlines, emails from clients and project collaborations taunt me from my desk.  Reality, in many forms, just crashes into any story where I’m trying to lose myself.  You would think that the last book I would choose when trying to escape would be one about illness.  Perhaps you have more sense than I, because that is exactly what I ended up doing.  I am so glad I had this lapse in ‘better’ judgment, though, as I would have really missed out.

Dr. Jaime Weisman’s book As I Live and Breathe: Notes of a Patient-Doctor  (North Point Press, 2002) caught my attention for two big reasons:

1) I related immediately to the cover photo, as someone who has also received medical treatments for a faulty immune system; and

2) It was written by a doctor who is spending a little time on my side of that tube. 

I half expected the book to be written in a way to get me to feel compassion for a physician who falls from grace.  What I discovered—no, received—was another lesson in not judging a book by its cover.  Once again, I go in for one purpose and leave with another.  I expected revelations about a doctor’s new perspective and emerged with an appreciation of the human spirit. 

The absolute beauty of this book, for me, was in her writing.  Ms. Weisman was a patient first and headed towards a career in writing.  However, her turn towards medicine was a gift to many of us and still offers a reassuring voice through her practice or her writing.  Although she touches on medical issues and some of her own struggles getting through her days as a patient, I didn’t feel burdened by grief or enlightened about how best to navigate the medical puzzle.  She leads the reader both forward and backwards in time, skillfully tying together the thoughts and experiences that make up the cycles of experiences we all go through, healthy or not as healthy.  Her essays gracefully describe the complexity of her condition as a reference point for the reader, rather than as a badge of honor.  From that reference point, I wanted to journey with her and absorb her experiences in order to find a place or a word to help describe my own.  Her memories, poignantly expressed, resonated within me as a person first and as a patient second. 

This book is grounded on the importance of relationships.  All relationships, hers ranging from the professional ones she establishes as a physician and the personal ones she cherishes as a daughter.  Even the relationship she develops, continuing over time, with her body is testimony to the old adage “becoming your own best friend.”  The relationships she takes part in as a patient herself, with other patients and her medical team, are keenly explored and serve a models in finding your own best sources of support. 

After finishing this book, I am left with a sense of comfort.  There were so many passages that caused me to stop, mid-paragraph, and really pay attention to what she was saying.  Or, sometimes, to simply to pause and release some pent-up tears.  One quote, in particular, took me back to my own memories following my diagnosis over a decade ago.  At my ten-year appointment, where kidney failure and dialysis are quite possible for 50% of us with lupus, my doctor asked me if I realized how sick I had been.  My answer, as I’ve mentioned here on this blog before, was “no”.  Ms. Weisman puts my feelings about what I did know in the early years of my illness in the best way possible and answers my doc’s question better than I did: 

“The cure for the fear of dying is living.”   (Pg. 210) 

This book, and Ms. Weisman, herself, exemplify how powerful working towards a cure can truly be—for all us.

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

Note:  I received no compensation for reviewing this book. 

“What is the nicest thing (or things) anyone has done for you since you became ill?”

I believe the nicest things that I’ve received from people since my health challenges hit me have been to offer me reality checks about humanity. 

As difficult as they may feel at first, the comments, behaviors, choices and changes in our relationships have motivated me to respond in ways that have been outside of my comfort zone.  That blundering through my fear, grief, anger, apprehension and surprise has built within me a sense of resiliency that I never knew possible.  It has also led me to some surprising appreciations. 

Those relationships that dissolve due to the loss of knowing which words to speak, or the ugly realization that their patience really DID have an end, offered me opportunities to see that all people are fallible.  It has been easier, after some time passes, to run into these individuals (who walked out of my life or visa versa) and speak to them as fellow humans.  These are simply honest people who may have made decisions that hurt me, but were decent enough to be upfront about it. 

It has been the relationships with my medical teams that have given me moments of vulnerability as well as moments of gratitude.  Beginning with my first practitioner’s refusal to acknowledge the necessity for a urine sample to my specialist’s decision to waive his fees in light of my difficult circumstances, I have learned much about the dimensions of medical care.  The hospital’s response to my then insurance company’s act of betrayal showed me that  they do have the capacity to care.  The laughter and care of the staff, both at the labs or during my hospital stay, gifted me with moments of respite from the uncertainties I was facing.  In fact, I was amazed at the commitment my medical team had shown during my hospital stay by keeping a toxic individual from threatening my chances of survival. It was through their security and protection that offered me time to bounce back from kidney failure by restricting their visits, for which I will always be grateful.  As easy as it sometimes is to become frustrated with how our nation’s medical care falls short or how cold our doctors may seem during our 15-minute appointments, seeing the other side of those presumptions has pushed me to look beyond the white coats and clip boards.  They live and breathe just like I do.

There have been individuals who have astonished me with their compassion and respect, even when they didn’t understand what was going on in my life.  The mysterious food boxes left on my front porch without a note.  The bills paid on my behalf without explanation or warning.  Their cards, letters, phone calls and emails touched my hardened heart with grace and sincerity.  Their well-intentioned, unsolicited questions and suggestions forced me to listen to reason through my veil of distrust and seclusion.  Their understanding that they would never fully know what I was experiencing allowed me my time alone without explanation or apologies.  They knew I needed the time to breathe and, when I felt I needed no one, they helped me to see how wrong I had been to hold onto my pride like a medal of honor.  It was clearly more like a fortress of shame and was something that needed to be dismantled. 

It is easy for us living with illness to see ourselves outside of a mainstream, assuming that those around us are generally healthy and live without pain.  The fact is, our human bodies have the potential to break down in so many ways, some in plain view and some well disguised.  As we physically hurt, those we share our days with also hurt.  By not knowing how to fix things, what to say or where they can make the connection with us to show us how much they care.  Those individuals who keep their distance or walk away are showing us their limitations and vulnerabilities, too.  It hurts to realize we can’t do or must do the thing we sometimes need to do.

I’m learning to see beyond the actions and listen beyond the words in order to understand our shared human conditions.  It isn’t always easy or instantly possible, but I’m getting better at recognizing limitations as simple realities.

It is in facing the walls or getting through the battles that do contribute to my story.  It is the stories of others that help me keep my own story in perspective.  The kindest thing that I feel anyone can do for me is to acknowledge my place here on earth as a part of a bigger story.  I’ve learned that the essence of being human is exploring the complexities of the many characters living within our stories. 

The struggles and villains make the story interesting.  The perserverance to keep going makes it all worth the sharing.

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

Visit Q and the rest of the participants at her blog carnival!

Check out Love Simple

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

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

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

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

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

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

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

Where are you in all of this?

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

Thanks, Leslie, for contributing to this important conversation~

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.”

Personally, I’ve been under a lot of stress lately and getting a chance to relieve some of that pressure with a good chuckle sounds like a pretty good idea.  I have been trying to take up on of my new pal, and MLWT guest blogger, Andrea Crisp’s invitation to join one of her Laughter Yoga classes for quite some time.  Something always seemed to come up and I have had to reschedule more times than I’ve wanted to.  For the past three weeks, I have been dealing with brutal headaches that I’ve suspected were due to seasonal allergies, even though I’ve never really thought of myself as having allergies.  That seems to be the case for many people this spring, as the local news and doctors have been saying this is one of the worst seasons they’ve seen in quite awhile.   So, after cursing at my head for this long and backing out of commitments that I’d been looking forward to, I have committed to attend the celebration she and a fellow colleague will be holding today at Whole Foods Marker in NE Portland at Noon today. 

Here is her post on Portland Laughter Yoga  and the World Laughter Day celebration.  I am hearing more about this form of stress relief and ‘exercise’ building some wellness momentum.  I’ve been going through cold and sinus pills, home remedy attempts (like rinsing my nose and heat packs placed on my face), sensitive teeth, pounding head, light sensitivity and so on, without any relief.   I know that if I don’t laugh at this point, I’m going to cry. 

Laughter is showing up in more studies as it pertains to coping with illness and I hear many individuals who are living with illness referring to how keeping a good sense of humor has helped them get through some very difficult times.  To learn more about the health benefits of laughter, revisit our post about it here.

Come join in on the fun – either by participating, observing and learning, or commiserating with me about this allergy Hades we’re all going through right now.  We have added Laughter and Lupus as one of our MLWT Target Practice topics and Andrea will be the leader for this workshop gathering.  She will be available to answer any questions you may have about this unusual, yet effective, health alternative that won’t require taking another pill.  It won’t even require agility or flexibility~ it’s not that kind of yoga.

It simply requires a pair of lungs and a willingness to tap into your funny bone, for the health of it.