What does this day mean for you?

First, some background~

My mom is 72 years old and lives with me.  She has been battling physical challenges since before I was even a glimmer in her eye.  In fact, I suspect I am a DES baby due to the nine months of nausea I put her through while pregnant with me.  And, believe me, she works that one into the ground.

Currently, she struggles with constant pain (to name only one challenge), due to a combination, we suspect, from degenerative disc disease, fibromyalgia and nerve damage from an accident many years ago.  I think there are probably even more factors like medication side effects, nutrition (she loves her convenience foods) and lack of social support (I can’t be everything and animals don’t ‘talk’).  The point is that she knows what being on medication is about, simply because this behavior of pill popping is so deeply ingrained into her very being.

So, when she started complaining about acute stomach pain – she has chronic pain, but these new sharp pains were new for her – I began asking her questions.  Basically, our conversation today went something like this:

Mom:  Boy, my stomach is killing me.

Me:  Could it be your ulcer?

Mom:  No, this is different.  Every time I eat something, I get shooting pain.  I just don’t want to eat.  And ice cream doesn’t cool things down like it usually does. [Insert my head shake of frustration here – ulcers and dairy don’t mix for her and she knows that.]

Me:  Are you accidentally doubling up on your meds (which she does when she forgets to take one) or taking something new?

Mom: I don’t think I’m doing that. [insert another head shake by me]  I am on something new, though.

Me:  This has been going on for over a month, Mom.  Did you call your doctor like you said you would last week?

Mom:  Well, I will if it gets worse.  It has been better lately.  Just keeps coming back. [insert, ...well, you know]

Me:  Let me read the bottle, okay?

Mom hands me the bottle and I begin to read off out loud what is stated in the smallest font I’ve ever seen.  I read what it is, who the manufacturer is, the dosage and warnings.  All appears to be in order with the usual information, but I’m thinking we may want to check with our pharmacist about any prescription interactions.  Then, I get to “Take with food.”

Mom:  Oh, with food?

At the risk of sounding like a broken record, this topic is covered in the Living Well workshops offered all over Oregon and Washington.  Even though sometimes participants chuckle when I bring up how we can easily misunderstand how to take our medications, this scenario with my mom only proves how taking a minute to read one of a gazillion bottles over again just to be mindful of what we’re taking, why we’re taking it, and, most importantly, how we are to take it is crucially important.  When it comes to creative pill popping due to time constraints, lapse in memory or just not wanting to wait to eat, I’m also guilty as charged.

Mom has medications that require some with food and some without, leading her to simply want to organize her regimen that makes it more memory-friendly (not working). This re-organizing, though, causes her to easily confuse the appropriate requirements that allow each medication to do its job as designed.  We all do that, don’t we?

Mom’s appointment is this Monday and I gave her a good scolding to prep her for the one waiting for her during her appointment with her doctor.  Mine will probably be the more gentle chew out of the two, but she deserves what she will get and her situation will only support the belief among the medical community that patients aren’t taking their medications correctly. They’re right.

For the sake of all of us wanting to be taken seriously by our healthcare providers, we must be mindful every time we take our meds.  How irritating is it when we complain something doesn’t work like it is supposed to and some smart a** asks us that inevitable question “Is it plugged in?”

We all need to remember to ask ourselves that same question with the next pill we take~  no matter how experienced we our with our treatment plans, reminding ourselves to pay closer attention to our own self-care behaviors is really important.

Here are the three community requests and the responses I received – thank you to those of you contributing to the discussion!

Request #1: Some suggestions on how to respond to family/friends who question the inconsistencies of our symptoms (for example, “You were fine a half hour ago!”)

A few people recommended The Spoon Theory, a familiar tool using something tangible to reflect a measurement of how much energy it takes to get through a day.  Although not everyone with lupus experiences challenges with fatigue, using spoons (or I’ve also heard people use other things like tooth picks) is a good way to express loss that others can relate to.

On a similar note, I recently learned of a communication tool that a dear friend, and organizer for the Portland-area Fibromyalgia/CFS support group , Tamara uses to give her husband a signal for the day regarding how she’s feeling.  When her clear jar is full of the polished pieces of glass, she’s doing great.  As the day goes on, she removes pieces as needed and, without saying a word, he ‘sees’ where she is at a given time.  What makes this a wonderful way of communicating is that they both developed this language together and by taking out the need to exchange words taxes her less and strengthens their relationship more. Co-creating a communication tool that speaks clearly and compassionately is something maybe to ask your friends to take part in.

Of course, there is the standard communication tool of “I feel…” messages, as I was reminded by a graduate of the Living Well with Chronic Conditions workshop, Laurie.  These messages, with practice, help take some of the defensiveness out of a situation by focusing more on how we feel or the concerns that we have when something is said or done.  In the situation that prompted this question here, the member who sent me the email felt defensive immediately when her sister-in-law couldn’t understand what happened within a half hour that changed her energy levels.  She snapped back and wished that she had a better, and cleverer, response that wouldn’t have led to hurt feelings all around.  Here is an example of how a conversation might happen and how using these types of messages can make the same conversation go a little better for everyone:

Without an “I” message –

Sister-in-law: “You were fine a half hour ago!”

MLWT member: “So, what are you saying? That I’m making it up? Thanks for the compassion…”

With an “I” message –

Sister-in-law: “You were fine a half hour ago!”

MLWT member: “I feel like I need to defend myself when I can’t explain how much my body puts me through.  I really want to figure out a way of telling you how I feel so that we could understand each other better.”

The key here is that the MLWT member focuses on what she is feeling, thinking and wanting without using those dreaded “You” messages that feel great in spewing to others, but cause emotions to get away from us… leading to defensiveness towards everyone.  Whether the sister-in-law commits herself to actually help figure out a way to better communicate is out of the MLWT member’s hands.  First, and foremost, the MLWT member gets what is on her mind off her chest and maintains a sense of calm (managing stress) while coming up with an idea to ‘fix’ the situation (proactive and constructive). These messages may not feel very natural at first, but taking that extra minute to focus on taking care of you gives more opportunity for positive results than there would be otherwise. 

Finally, MLWT member, Janice, simply stated:  “Tell her to just smile and nod – people will never really understand what we’re going through.”  Good point, Janice.

Request #2:  Kitchen products that have good grips and are light weight

Here are some responses I received to this MLWT member request:

-OXO products

-Kitchen Kaboodle sometimes has great little tools, or any senior living source (Gladys)

-Arthritis Foundation website sometimes mentions products (Laurie)

Anyone else?

Request #3:  Any books that help mothers be supportive to their children who are struggling with chronic health challenges (preferably non-clinical)

I’m still compiling, but Universityof Michigan offers a great website that covers some really important points that you may be interested in.  It isn’t easy to find sources covering illnesses like lupus or fibromyalgia, but consider seeking out books and websites that cover areas like cancer (LOTS of books available).  Even terminal or hospice sources that discuss caretaking for communication tips. Of course, the National Lupus Foundation is always open to hearing your requests, offers topics like this in their webinars and has a book recommendation list  you may want to check out.

If you’re on Twitter and have some additional resource ideas, use #CIbook within your tweet and I’ll find it!  You are more than welcome to share them here, as well.

The Winter/Spring MLWT Musings enewsletter will be out in late February, so if you have any thing you want to put out there to the community members to help problem solve an issue, email me here and I’ll get it into the next edition.

In case you don’t already know, I simply cannot get myself to sit still and meditate.  The whole idea of being present in the moment is a tough pill to swallow.  With the multiple, crushing blows I’ve had happen recently— health and otherwise—I figured it was time to more seriously explore more options.

Let’s face it, autoimmune disease and stress go hand-in-hand, and with life being hectic and chaotic enough, I know I don’t need to add more to the mix with my outrageous need to “do it all and perfectly” belief system.  Although there are specific mindfulness trainings and therapeutic practitioners available to guide us in exploring this practice more fully, I offer my laymen’s version of what little I’ve been doing on my own.

Mindfulness practices are exercises to focus on the present moment in a non-judgmental way.  Stemming from Buddhist spiritual beliefs, practicing mindfulness in the Western world falls more into the positive psychology realm as a form of emotional self-care.  By paying attention to my breathing and setting aside any thoughts that are not associated with my focus of the moment as they come into my mind, I practice paying attention.  By doing this, I not only can slow down my oxygen needs, my heart rate and calm down my system’s fight-or-flight reactions, but also give my entire body a loving time-out…all without having to sit in a lotus position.  There are three activities where I use this increased attention practice.  I’ll only talk about one for now:  focusing on sleep.

I have incorporated being more mindful into my night-time prep to help improve my sleep.  By focusing on what I do, why I do it and paying attention to the details like the sound of water, the sensations like washing my face or brushing my teeth, it is amazingly calming.  When the thoughts of what I didn’t get to on my to-do list show up, I simply give myself permission to deal with it “later” and get back to paying attention to preparing for bed.  I cannot tell you how this simple ritual has improved my quality of sleep.  My brain can go a mile a minute if I let it and it has often caused me to wake up or not sleep at all, creating more pain and negative moods the following morning.  During the three weeks I tried it out, I tracked 50% more hours of sound sleep, better mood mornings and more energy.  No extra time, no special equipment, done right in my own home while doing what I normally do anyway.  Just a shift in how I go about it made a world of difference.

In the Living Well with Chronic Conditions workshops (Oregon’s name for the Stanford University’s Chronic Disease Self-Management Program or CDSMP) available throughout Oregon, you can pick up some easy-to-do practices including breathing techniques, progressive relaxation, and guided imagery which all fall under a similar realm of wellness care.  They take some time to practice, but are so unbelievably easy and shown through research to be effective in improving health outcomes by connecting how our minds and bodies interact together.  With autoimmune conditions, that “auto” part is of particular importance to us and more studies are beginning to show that even though our immune system, as well as other automatic systems that keep our bodies functioning, acts without us having to think about it, we can influence them in ways to take better care of ourselves.

Practicing some mindfulness on positive activities that we do every day like preparing for bed (or simply scheduling a few minutes of taking some deep, focused cleansing breaths) can be the most loving thing you’ve done for yourself in quite awhile.  Try to bring more in-the-moment attention into your days, particularly as the holidays approach, and see if creating a mindful ritual can treat you to some healthy kindness.  You deserve it!

Even if you don’t live on the coast, what a great reason to go and escape this heat!

September 10-15, 2011

 Arthritis Road Show 

Serving the communities along the Oregon Coast

The Arthritis Foundation is bringing free resources to the communities of theOregonCoast!  Hear from rheumatology specialists, orthopedic surgeons, and get a free osteoporosis screening.

Program Dates and Locations

Saturday, 9/10           Astoria – Holiday Inn Express

Sunday, 9/11             Tillamook – Tillamook Bay Community College

Monday, 9/12             Newport – Oregon Coast Aquarium

Tuesday, 9/13            Yachats – Adobe Resort

Wednesday, 9/14       North Bend – North Bend Community Center

Thursday, 9/15           Gold Beach – Curry Public Library

Program Schedule:

6:00 pm  -  Registration & Resources

6:30 pm  -  Presentations and Q&A sessions

7:30 pm  -  Program Concludes

To RSVP, Please Contact:

Cynthia Bishop, OregonPrograms Coordinator

Phone:  (503) 245-5695  Toll Free:  1 (888) 845-5695

Email:  CBishop@arthritis.org

Sponsored by:

Pfizer

Amgen

rebound Orthopedics & Neurosurgery

Janssen

Abbott

Arthritis Foundation

The urgent note I want to mention is that, although the group has moved to the Multnomah Arts Center , which I’ve had posted on the site.  This meeting had to be changed back to the old stomping grounds at the Beaverton Library on 12375 Southwest 5th Street . Due to road construction and the Farmer’s Market, the time has also been changed to begin at 1:30 with Andrea coming on at 2pm.

I hope to see you there~ trust me when I say this is a fun way to spend the afternoon.

Have you ever wondered how a lawyer analyzes a social security disability case and figures out whether a case can be won ?  How do the facts in a particular case add up — or not — to a winning case? 

I decided to create a column dedicated to sharing an inside look at how a lawyer takes the facts of an individual case and works with them to shape a winning argument for disability benefits.  In my column, I draw on my own cases with names and other facts changed to protect privacy to help explain how it works.  I call my column “Can This Case be Won?” because I believe that stories, especially those based on a true case, are the best way to help non-lawyers understand the legal process.  Let me know what you think!  And check it out at my social security disability blog .

Warm regards,

Cheryl

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

Another option is to participate in a Portland-area focus group either this week or early next week~ they will only be in town for these interviews for a few more days.  Remember that the focus is on using naturopathic treatments that you may have included within your regular conventional treatment, such as acupuncture and Chinese medicine. I am coordinating the local focus group for them, so please call me at 503-616-4856 or email me at maria@mylifeworkstoday.com to register asap.

This is a wonderful opportunity to help bring awareness to our medical community that thinking outside the box offers more options for us in taking care of ourselves.

******Update:  We have scheduled a date and time for this focus group~ Thursday, July 7th at Beaverton Library.  The time frame is from 1-3pm, but there is opportunity to still be interviewed until July 9th.  Refreshments and a Starbucks gifit card will be offered for focus group participants.  We have a couple of spots left~it’s simply you telling the researchers about your use of naturopathic treatments and what part they’ve played in your wellness.

(a) elderly

(b) undeserving

(c) disabled for life; and/or

(d) taking advantage of the system

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

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

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

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

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

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

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

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

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

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

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

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

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

“Guest speaker at the next Scleroderma Support Group Meeting in Portland is Naturopathic Physician Serron Wilkie N.D. at 10am Saturday, November 13 at Legacy Good Samaritan Hospital.  “How Integrative Care Can Improve Your Health: Natural Treatment for Patients with Scleroderma and Autoimmune Disease“ will be presented by Dr. Wilkie followed by Q&A.

According to the Kwan-Yin Healing Arts Center website, Dr. Wilkie “helps her patients restore a sense of ease, harmony and joy in their lives by creating optimal health and sustainable wellness. Patients who have not been helped by other conventional or alternative treatments often seek out Serron for relief and deep healing.

“She earned her naturopathic medical degree from the National College of Natural Medicine (NCNM), the oldest school of naturopathic medicine in North America.  There she was honored with the Nature Cure Award for embodying the principles of naturopathic medicine.”  Find out more about Dr. Serron Wilkie N.D. at kwanyinhealingarts.com .

Donna says that she is warmly encouraging people to come to the Nov. 13 meeting for an end-of-the-year gathering.  She hasn’t seen some people for quite a while and would dearly like to touch base as we close out 2010.” 

All Scleroderma Support Group meetings are free and open to the public.  This Oregon Chapter event is scheduled for 10 am at Legacy Good Samaritan Hospital (Wistar Morris Room on 1st floor), 1015 NW 22nd Avenue, Portland, OR.  For more information about this or any chapter support group topic, please visit their website.