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Monday, April 22, 2013

Chronic Pain, @Facebook Games and @EA 's Pet Society #savepetsociety

My pet, Miss Hiss (right),
in happier days
Today I want to talk about something that is near and dear to my heart...

If you are a friend of mine on Facebook, then you know I play social games there.  But this is more than just a hobby or a favorite past-time.  Did you know that research shows that playing video games can help those of us living with chronic pain?

VIDEO GAMES HELP PAIN PATIENTS

Sounds weird, right?  Well games help distract us from our pain.  I know this for a fact!  I get so caught in my games sometimes that I actually don't feel my pain...for like a millisecond.

The immediate effects are temporary, but in the long run, playing video games can help us cope better with pain.  Here is some of the proof:

Video Games Help Treat Kids With Chronic Pain
Video Games Help Relieve Pain
Healing Pain Through Videogames

NO!!! MY GAME IS BEING DELETED

So what sucks as much as life with daily, chronic pain?  Finding out your favorite online game is getting the axe!

My favorite game on Facebook is Pet Society.  EA (Electonic Arts), the company who owns it, has announced that they will close the game on June 14, 2013.

I am so upset about this news that I am volunteering what precious, little energy I have each day to help organize players around the world to protest EA's actions. (As a former social worker, I am good at organizing groups.)

REASONS YOU SHOULD HELP ME OUT
  1. Pet Society is family-friendly game, unlike the sex and violence rampant in the games that make up most of EA's line-up.
  2. EA bought this game from Playfish, the game's creator, in 2009.  Now they are systematically closing down all Playfish games.  And EA is using the money earned from Pet Society to create more games filled with blood, guns and lewd behavior.
  3. This game is beloved by its players all over the world, probably due to the connection with pets. For those who can't have a real pet, their Pet Society pet has become the pet they can't have. 
  4. Most of all, I thought gaming companies were supposed to make us happy with their games. Instead, EA is going to kill all our pets!  This is making me very, very sad...and mad!
FOR THE NAYSAYERS

Yes, I know, this is a virtual pet.  Yes, I know, maybe I need to get a life...which I would do IF I could get rid of this disabling and debilitating chronic pain!!!

But please don't judge me.

We all have little, quirky things in our lives that bring us happiness and joy.  And I know for a fact that Pet Society is bringing a little joy and happiness to MILLIONS of kids, from 13 to 92, all over the world.  Kids just like me, who also live with chronic pain and illnesses.

How do I know?  Because I have met, and become friends with, several other sick chicks playing Pet Society on Facebook.

HOW TO HELP

Please support the 20,337 (and growing) members of Please Save Pet Society by:
  1. Sign this petition: http://chn.ge/11ffPmA (you don't have to play to sign the petiton, just support our cause!)
  2. Join the Please Save Pet Society group on Facebook
  3. Like our Facebook Please Save Pet Society fan page 

And finally...

DO YOU KNOW ANYONE AT EA?

I wish I knew someone at EA who would talk to us and try to work things out.  At the very least, we players would like to be allowed to download our pets.  I've been told that our pets actually contain personal and private information, information that Facebook says we are entitled to!

But the biggest reason to download our pets?  They will disappear if/when EA shuts down the Pet Society servers on June 14, 2013.  We all don't want that!


video


Share with me some of the little, quirky things in your life that bring joy and happiness to you when you leave me a comment.


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Monday, April 15, 2013

Patients for a Moment: The Stresses of Chronic Illness


Welcome to the April edition of the Patients for a Moment (PFAM) blog carnival.

Patients For A Moment is a patient-centered blog carnival - for, by, or about patients - that was started by Duncan Cross. The goal of the carnival is to "build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients."

This time participants answered the call to write about The Stresses of Chronic Illness: all the big or little things that cause you stress and make life with chronic illness challenging.

I am pleased and excited to present these 16 17* responses.  Each one tackles the answer to this query from a different perspective.  After reading all of these posts, I can honestly say I need to take some time to appreciate all the different ways of thinking about this topic, as well as review the wealth of suggestions for coping with stress.

So let's dive into the discussion, shall we?



Stressed Because Being Sick Changes Everything


Dear Iris does the best she can with the limited energy she has, but she still keeps getting behinder and behinderer (real words, she promises!)  In The Stress of Living with a Chronic Illness she talks candidly about all the ways having lupus has changed her life--not all for the better.  She blogs over at Sometimes It Is Lupus.

Lorna from Life with RA is a Pain admits that she has a lot of stress in her life, from multiple sources, much of it linked to her chronic illnesses.  So much stress in fact that she isn't sure what to do when her usual stress-relieving strategies don't work. So she's inviting you to read her post Stress And Chronic Illness and leave her a comment with your stress-busting suggestions.

"Chronic illness feels like a constant fight against your circumstance," says Rosemary of Seeking Equilibrium.  When she was healthy, she used to love flying through life by the seat of her pants; now that she's sick, life is more like one great, big pain in her fanny. Read more of her wry and poignant insights in Here's My Number So I'll Call You, Maybe.

Symptoms = Stress...and Stress = Symptoms


In her post The Stress of Chronic Illness: How Stress Triggered My Sleeping Chronic Illness, Julianna from What the Jules discusses how the stress of her "healthy" life created the conditions for the seeds of her chronic illnesses in her body to germinate, sprout and grow.  She now copes by figuring out healthier and easier ways to do things, the basis of her new, lower stress lifestyle she terms "chronically awesome."

If you live within an invisible chronic illness, you will be able to relate to what Cheryl says about living a dual existence, i.e., what you "looks like" versus what you "feels like."  And if you live with her particular invisible illness, you'll understand when the first question she asks you is "Where's your bathroom?"  Click here to read The Bathroom Burden at Wings Like Eagles in the Desert: A Journey through the Wilderness of Chronic Illness.

In PFAM - The Stress of Having a Chronic Illness - Fibromyalgia, Laurie writes honestly about what it is really like for her to live with fibromyalgia, stating that the pain is not just physical, but emotional too.  Her funny and sad portrait highlights the daily stresses that are part of her now "half life."  See for yourself over at Hibernationnow.

Sometimes it's denying the need for some honest-to-goodness help that causes the most stress when it comes to living well with chronic illness.  The Afternoon Napper makes this point quite brilliantly in Whichever Way You Swallow It - A New Medication Adherence Method.  Please head over to The Afternoon Nap Society to see for yourself...

Anya of The Patient Patient knows that her physical illnesses create stress, anxiety, depression and loss of self-confidence.  She recognizes that getting overwhelmed by these feelings can, in turn, worsen her physical health.  In her post Feeling stressed about being stressed!, she explores the mind-body connection as well as explains her approach to stress management.

So there are the stresses of everyday life and then there are the stresses imposed by chronic illness.  So what do you do?  Well Donna Kay created a plan to manage her everyday stressors so she could focus on taking care of her health and taking advantage of opportunities to have some fun too.  Visit Healthier Stay to view her post My Routine For Spontaneity.

Health Care Stress


When you're chronically ill, is it too much to ask for something in the health care system to go smoothly, just once?  Leslie of Getting Closer to Myself discovered that the answer to that question is a discouraging, "Yes it is." She shares her story of how procuring a prescription turned into an annoying and unnecessary ordeal in A “Bitter Pill”: Weighing In On Our Broken Healthcare System.

Dana at Chronically Mommy shares her post The Stresses of Chronic Pain--Misconceptions and Stigmas! with us.  In it she discusses the misinformation friends, family, health care providers and the public believe about what it means to live with chronic pain.  She points out that those mistaken views and opinions often translate into health care for patients that emphasizes learning to live with pain instead of offering treatment plans to help us manage It.

When it comes to managing fibromyalgia symptoms, most reputable health websites state that "your doctor's treatments combined with good self-care will decrease pain and minimize symptoms."  Selena from Oh My Aches and Pains! believes that she is doing everything she can with her self-management techniques; what she says is missing is a doctor that understands her pain AND is willing to treat her for the long haul.  Learn the whole story when you read The Stresses of Seeking Medical Treatment for Fibromyalgia.

Chronic Illness, Stress and Relationships


The stresses of illness sure do complicate our lives and put pressure on our relationships, especially our marriages.  Fortunately Helena learned three strategies that can really make a difference when stress from illness impacts our partners and passes that knowledge on to us in her post Illness, Stress and Marriage at Chronic Marriage.

Our partners can feel stressed out when they don't get what they need from us because our chronic illnesses get in the way. Thankfully one of the members of Rona's health care team helped her with a very important relationship issue, advice she shares with us in Shhh! I'm Going to Talk About Chronic Pain and Sex at her blog BerryMorins Bits and Tips.

Kathy at FibroDAZE found out that stress can rear it's ugly head at any time, like after an exhausting trip to the grocery store. While resting in bed afterwards, her thoughts turned to questions about what the future holds for her and her husband as she ages with chronic pain.  Check out Grocery Store Blues and let her know if you think about these things too.

But Wait, Is All Stress Bad?


Yes, sometimes the symptoms of our chronic illnesses stress us out.  Maria at My Life as a Puddle empathizes with you, but also encourages you to transform your stress into success by not letting your symptoms hold you back from doing things you really want to do. Read how she did this in her post Hyperhidrosis & Yoga.

O.K., so stress may (or may not) make the symptoms of your chronic illness worse.  But Duncan points out that it can also be a good thing, as in motivation for getting out there and enjoying life to the fullest despite being chronically ill.  Take a moment to reflect on this message in PFAM: Avoid stress, avoid life which can be found over at Duncan Cross: ill. humored.



That's all for this edition.  I hope you have as much fun reading this as I did putting it together.

Here is where I would direct you to the blog of the next host for PFAM...but instead I am going to ask for volunteers!  We need 8 people to come forward and graciously offer to host PFAM at their blog for the months of May, June, July, August, September, October, November and December 2013.

This is your opportunity to help keep this blog carnival tradition going.  Hosting is easy and I can certainly answer any questions you might have about how to do it.  To learn more about being a host check out the Application Information for Hosts here.  Then contact Leslie at gettingclosertomyself at gmail dot com if you are interested.

Also, don't forget to check out the PFAM website and like the PFAM Facebook page.

*My apologies to Dana from Chronically Mommy for temporarily omitting her post.  I rectified my error on 4/16/2013.  I blame the huge fibro-flare I am currently enduring for making it harder for me to be organized and pay attention to details (amongst other things!)  As someone who also lives with chronic pain, I know she understands.


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Thursday, April 11, 2013

The Stresses of Seeking Medical Treatment for Fibromyalgia

I got a very nice email from a friend the other day.  She said to me, "I hope that your pain is well managed.  It must be difficult to get doctors to not only believe but understand how life is miserable with pain."

What a great friend, right?

While I appreciate her support, I'm not sure how to reply.  You see, the awful truth is, despite all my attempts to reach this elusive goal, the bottom line is that my pain isn't what I would call "well managed."

I mean, I do the best I can do with my toolbox of self-help strategies.  Those include planning, pacing, problem-solving, activity modification and use of adaptive equipment.  Self-help techniques do provide me with a framework for living within the boundaries of my illness-imposed limitations.  They also can help with pain flare-up prevention, at least some of the time.  But is figuring out how to live as best I can with chronic pain really the definition of "well managed pain"?

I think not.  My idea of well managed pain would be a treatment program that over time:

  • decreased my pain and fatigue levels
  • improved my sleep
  • allowed me to perform more activities of daily living
  • increased my capacity for exercise and other activities
  • allowed me to return to normal activities, like work, league bowling, long bike rides and walks, frequent travel, etc.

I truly believe that I am doing as much as I can to manage my pain.  So what is missing?

If you Google "fibromyalgia," you'll find links to many reputable health and medical websites.  One of the first things these sites will tell you about fibromyalgia is that:

  • it is currently incurable
  • your doctor's treatments combined with good self-care will decrease pain and minimize symptoms
  • there are drugs in the research pipeline that may help this painful condition

It's 2013, I've lived with fibromyalgia for almost 9 years now and I know for a fact that fibromyalgia still isn't well understood by the medical community.  This ongoing lack of basic knowledge about fibromyalgia--what causes it, what parts of the body are involved, the exact nature of the bodily dysfunction it causes and how to reverse this dysfunction--all translate to a lack of medical treatments that can successfully decrease or eliminate pain and other symptoms for all who suffer from it.

The second thing they will tell you is that the key to chronic pain management is a multidisciplinary approach, a fancy way of saying that you should be treated by a team of medical professionals.

So do I have a team of medical professionals helping me manage my fibromyalgia?

Once upon a time, way back in 2006, I benefited from this approach for a brief six weeks when I attended an outpatient chronic pain and fibromyalgia rehab program.  I struggled to find the energy and transportation to get there, but it was well worth the hassle.  The program was staffed by a physical therapist, an occupational therapist and a pain psychologist.  This experience became the basis of my current self-help tool box.  It also spurred me on to pursue further study through the online CFIDS & Fibromyalgia Self-Help program.

That rehab program was a good start, but follow-up and ongoing care was lacking once I completed the program.  And the doctor who sent me to the program didn't seem have much else to offer me in terms of treatment.  Which seemed odd to me, especially since other participants in the program shared about the treatments their doctors were offering them, things I hadn't been given the opportunity to try.

So I sought out treatment from another pain specialist, who prescribed a new combination of  treatments for me. But when I tried these options and they failed to bring relief, my treatment came to a screeching halt.  My doctor threw up his hands (figuratively) and proclaimed, "I don't have anything else to offer you." which was delivered with a generous subtext of I'm ending this doctor-patient relationship since I can't help you.  That left me once again searching for a new doctor.

Over the past 9 years, I've simply lost count of how many times variations of this  scenario have played out...over and over and over again.

These multiple, discouraging encounters with doctors--specifically the rheumatologists, pain specialists, physical medicine and rehabilitation specialists and neurologists who claim they treat fibromyalgia--leave me scratching my head and asking:
Why is it O.K. for a doctor to give up and dump a patient when they encounter a medical problem that is difficult to treat?
Is it any wonder that my pain is not well managed when my biggest problem is finding a doctor that understands my pain AND is willing to treat me for the long haul?
Unlike those doctors, I can't just simply throw in the towel.  This is my life and I want and need to do all I can to get my fibromyalgia symptoms addressed and properly treated.  Unlike them, I refuse to give up just because life handed me a difficult medical condition. I know I need medical professionals to partner with me so I can obtain as much relief as possible, so I keep searching for the doctors and other allied health professionals that will help me accomplish this goal.

So what saves me from the ongoing stresses of seeking medical treatment for fibromyalgia? My personal rule to Have Fun Every Day and my written list of fun activities that I enjoy doing despite my chronic pain.

Feeling stressed out by your healthcare too?  Try my personal rule Have Fun Every Day and create your own list of things you love to do that can distract you from the stresses of chronic illness and bring some joy and happiness into your life despite your health challenges.


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Friday, April 5, 2013

Call for PFAM Submissions: The Stresses of Chronic Illness

Stress is the trash of modern life – we all generate it, but if you don’t dispose of it properly, it will pile up and overtake your life. 
-Danzae Pace

It's a fact that modern life can be stressful.  Just ask anyone, healthy or sick.  Stress is so prevalent that the entire month of April is designated Stress Awareness Month.

And there is no doubt that chronic illness is one HUGE source of stress.  Or that living with chronic illness brings with it a whole set of new stressors.  I recently wrote about those stressors in another post and they include:

  • reduced physical and/or mental capabilities 
  • fluctuating health status
  • financial challenges
  • the repercussions on your relationships
  • the impact on your self-image and self-worth
  • the physical, mental and emotional burdens of being sick

For all these reasons and more, I've decided to make The Stresses of Chronic Illness the topic for the April edition of the Patients for a Moment (PFAM) blog carnival.

I'm looking to curate a collection of essays about how difficult life with chronic illness can be.  So write about the all the big or little things that cause you stress and make life with chronic illness challenging.  Those things can include your take on dysfunction in the health care system, health care policies that don't work and misconceptions about people living with chronic health problems.

You have my permission to vent as long as you also include some suggestions, tips and advice on how you cope with the stressor(s) you discuss in your post.

So fire up your computer and start writing.  I'll be accepting submissions up until 11:59 PM Pacific Time on Friday, April 12th.  Please send your submissions to:  selena at ohmyachesandpains dot info.

You will make my task of hosting easier by including all of the following information in your email:

  1. your name (as you would like it to appear)
  2. the name of your blog 
  3. the title and URL of your post 
  4. a one or two sentence description of your post

The PFAM Carnival is scheduled to go live on April 15th, which happens to be Tax Day here in the U.S.A.  Hopefully the added financial stress won't interfere with my plans to get PFAM published in a timely manner.

Feel free to email me at any time if you have any questions.

If you miss the deadline, you can still send me your submission for consideration and I'll do my best to include them.

If you want to contribute but don't have a blog, contact me about submitting a guest post to Oh My Aches and Pains! for this carnival.

Know of someone who has already written an excellent post about this topic?  Then send me a link to their post so I can include it.


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