Friday, July 12, 2013

Where #SavePetSociety Is Taking Me....

It may be that all games are silly. But then, so are humans.
~Robert Lynd
I'm not quite sure how to write this post without sounding like a complete lunatic, but I will give it a try anyway.

Over the past three months, I have gotten swept up in a protest movement to save an online Facebook social game.

Yes, that's right, I said a game.  A sweet little game called Pet Society.

Back in 2009, Pet Society appealed to me because I got to create my own pet, and you all know how much I really, really, really love pets.  Then I got to go visit other Facebook friends' pets and complete other in-game activities to earn coins.  With the coins I bought clothes for my pet and furniture and other items to design my pet's house and gardens.  I collected items and traded items, decorated and redecorated rooms to my heart's content and changed my pet's looks and clothes too.

In this game, my pet Miss Hiss could be whatever I wanted her to be.

What I discovered along the way is that Pet Society was a wonderful little world where all the pets were always smiling and always laughing. Sure, when you went to go visit a neighbor, there was an option to fight, but fights always ended with the pets laughing and making up.  There was an optimistic and carefree atmosphere in this game, something I often find hard to replicate and hold onto in real life...especially in today's world.

I believe there is truly something magical about Pet Society.  I admit that perhaps it is hard to explain exactly what that is to someone that didn't play this game.  On the one hand, it reminded me a lot of playing with my dolls when I was a girl, only better since everything was online and virtual, which meant no cleaning up after I was done playing.  On the other hand, the game revolved around and reminded me of all of the important things in life: friendship, love, fun, imagination and creativity.

And when I played Pet Society, it offered a distraction and respite from my life with daily, unrelenting chronic pain.

We all know that change is part of life -- people, things and states of being all seem to come and go.  So I guess on April 15th, I could have just accepted the fact that the game was closing on June 14th and decided to enjoy the remaining time I had with my pet Miss Hiss.  But then I found this Facebook group called Please Save Pet Society, and the next thing I knew, I was working with 32,000 people from all around the world to #savepetsociety.

I am still a sick chick.  Nothing has changed there.  But suddenly through this protest movement, I find myself with an opportunity to make a difference that fits with my life as a person with chronic illness.  To participate, I CAN sit on my recliner in my pajamas in my living room on my laptop computer.  My wonky sleep schedule isn't a problem and neither is my need to take frequent breaks or use my speech-to-text typing program.

The other very odd thing about all of this is how everything has come together surprising well when I have worked on tasks for the group.  For example, I called Electronic Arts (EA) in April and without much fuss got connected right away to someone there who I have been working with for almost 3 months now.  I have also networked on Facebook and Twitter and found contacts and resources that have helped our cause tremendously.

Quite frankly, I don't understand why this is so. The only explanation I can come up with is that the Universe wants me to be involved in this.  Weird, right?

Along the way I have been handed pieces of a puzzle, pieces that needed someone to put them together, and apparently that person is supposed to be me.   And when obstacles have blocked my way, I have found ways to surmount them and keep going, as if someone has been clearing the way for me.

This hasn't always been smooth going and there has been many times when I wanted to just walk away.  But then, as if the Universe really does have a plan for me, I see a glimmer of light at the end of the tunnel that helps me find the energy and strength to keep going.

Yes, I have temporarily abandoned other things in my life, like this blog.  This crusade has taken up a lot of my energy, leaving me with less energy to do other things.  I feel badly that this has affected my other activities and relationships too.

But I do see these as temporary sacrifices that I am making so I can see this protest through to the end.  This is, after all, a once in a lifetime event, and I do feel oddly compelled to be a part of it.  I hope you all can see and understand this too.

Because in the end, wouldn't it be all kinds of awesome to be able to say that this sick chick was able to help bring back a beloved and cherished game to a million players all over the world from the refuge of her couch?


But if doing this makes you think of me as a silly human being, I'm OK with that too.

Here is where you can see what I have been doing as a part of a big team of other Pet Society players and fans:

*NEW* petition - sign and share, share, share! http://chn.ge/13MVq8c at Change.org


And check out this video with 2,800 views that I created for #savepetsociety too:

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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?


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


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.)

  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!

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.


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...


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!

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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Tuesday, March 26, 2013

When the Going Gets Tough for the Chronically Ill

We all know the saying:
When the going gets tough, the tough get going.
But when you live with chronic illness, I think a more fitting revision might be:
When the going gets tougher, the tough disappear.
At least that's how it seems to me, especially when I look back at my own blog archive from the last year.  When I started Hepatitis C treatment in February 2012, things got really tough.  So I compensated by temporarily letting go of a lot of the things I love doing, like blogging and container gardening, to focus on my health.

Thing is, I've noticed that this happens to my chronically awesome friends too.  I visited the blogs of a few sick friends the other day and saw that they too have been absent.  From the few posts one friend was able to publish, I learned that her life is undergoing several major upheavals all at once.  I saw that she is posting as often as she can.  As much as I want her to keep sharing her story, I know her capacity to deal with life right now is overtaxed and her blogging must take a back seat.

The truth is, when you live with chronic illness, you lose your ability to do a lot of things.  Heck, there are days when I can't properly focus on getting just one thing done!  I often think doing is for healthy people.  Some days just being is all I have the energy to do.

But those of us living with chronic illness already get this.  So why am I writing this post?  Because I'm sad that our voices seem to fade out when things get really bad for us.  Our stories stop being told at the exact moment when the need to talk scream about what is happening is so much greater.  Which makes me frustrated, because when we get quiet, it seems like the healthy people in our lives don't notice that we are getting swallowed up by our tough health battles and could really use their help.

Call me cynical, but the only help I see us sick friends getting is that weekly reminder to church-goers to pray for the sick and elderly. (They still do that, right?) The rest of society is geared towards the able-bodied, so we aren't getting much help there, are we?

But we need much more than prayers.  Our lives are so much better when 1) we have healthy friends and family sharing positive interactions with us on a regular basis and 2) those folks can offer us some support and assistance, or arrange for it, when we really need it.  Unfortunately, too many of us don't have these positive interactions with healthy friends and family.  Even when we are surrounded by healthy people, those folks sometimes chose to tune us out instead of help us out.

We know that the fundamental truth is that it's hard to be sick. And we are faced with another fundamental truth: it's hard for healthy people to truly comprehend what it means to be sick and sometimes it's even hard for healthy people to just be around sick people.

Here is a quote I think pretty much sums up this problem:
People think they know you. They think they know how you’re handling a situation. But the truth is no one knows. No one knows what happens after you leave them, when you’re lying in bed or sitting over your breakfast alone and all you want to do is cry or scream. They don’t know what’s going on inside your head—the mind-numbing cocktail of anger and sadness and guilt. This isn’t their fault. They just don’t know. And so they pretend and they say you’re doing great when you’re really not. And this makes everyone feel better. Everybody but you.
~ William H. Woodwell Jr.

Now I feel bad that I have taken up so much of your time eloquently defining this issue when I don't have a solution to it, at least not yet.  But then again, perhaps the solution comes when we all start talking more about this, rather than letting healthy people go on assuming those of us living with chronic illness are "doing great."  Because let's be really, really honest--even on our "good" days, we aren't anywhere near to "doing great."

My goal is to live life "as well as possible" each and every day I live with chronic illness.

How does chronic illness impair your ability to tell your story? When health battles overwhelm you, do you get the support you need from the healthy people in your life?  What are your ideas on bridging the gap between ourselves and healthy people?

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Monday, March 11, 2013

Life Can be Painful for People Living With Chronic Pain

One of the first lessons you learn when you start living life with chronic pain is that daily life--family, work, home and school--can make your pain worse. All those little things I used to do without much thought, like run errands, cook, clean, shop and socialize, became huge pain-inducing obstacles to overcome when fibromyalgia pain came into my life.

It took me several years to figure out which daily activities made my pain worse. I know for many of us, the list of these activities can be quite long. And because pain symptoms can fluctuate over time, I find myself constantly editing my list--adding new pain triggers and scratching off the ones that are no longer problematic.

Right after the trip-and-fall accident that triggered my fibromaylgia, I tried to continue with my "normal" activities. I constantly pushed my body beyond its new limits to get things done and wound up getting so flared-up afterwards I needed to spend days in bed trying to recover. When enough was enough, I changed my tactic and put off as many things as I could to avoid flare-ups. But that meant a lot of things weren't getting done, which was very discouraging for me.

Thank goodness for the practical pain management techniques I was taught at the Cedars-Sinai Chronic Pain and Fibromyalgia Program in 2006 and for the online classes and groups at the CFIDS and Fibromyalgia Self-Help website that helped reinforce what I learned.  I discovered that once you recognize and identify the daily activities that are your pain triggers, you can almost always figure out ways to minimize their painful impact.

Over the years, I've used these strategies to deal with pain-inducing activities:
  • modify the activity to make it less painful, i.e. sitting down to do something instead of standing
  • break an activity down into smaller steps that can be done over time vs. all at once
  • find people who can help me do the things that are painful
  • delegate the activity to someone else (usually my husband)
  • say "No." and learn to live life without doing some things

Unfortunately no amount of planning or preparation can help with the things in daily life that are truly out of your control.

Now that I live with chronic pain, I cringe with fear at the thought of any kind of accidents happening to me. This fear is fueled, in part, by some mishaps that have occurred to me since fibromylagia: my shower bench breaking underneath me while I was sitting on it and breaking my foot while taking a big step down from our storage shed.

My biggest fear was realized a little over a week ago when my husband and I were involved in an automobile accident as he was driving us home from the mall.

The accident itself still gives me nightmares. The fact that my pain level has shot up to a 10/10 on several occasions over the last 10 days is quite a nightmare too.  And don't get me started about the numerous trips I've needed to make to the doctor's office and/or the Emergency Room to treat my accident-related symptoms.

My pain and my life have become quite unmanageable since the accident, which is equal parts frustrating, exhausting and frightening.

What concerns me most is that chronic pain can make it more difficult to identify physical injuries from accidents.  Pre-existing pain can mask the symptoms of new injuries and make it more difficult for your doctor to diagnose new problems.

As bad as the accident was, the SUV we were in (and our guardian angels) did a very good job of protecting us from severe injury.  On a safety note, I always wear my seat belt when I am in a car, even thought it can poke at my painy parts.  I know that the seat belt I was wearing literally saved my life. Unfortunately the "seat belt sign" injury I sustained is one of the reasons I'm now dealing with more severe pain.

I'm not sure what happens now.  Among many other things, I'm concerned about how long this extreme flare-up is going to last.

It's going to take all the self-help pain management techniques I have in my toolbox to get me through today.  I'll just have to wait and see what tomorrow brings. In the meantime, I do know daily activities that weren't particularly bothersome a fortnight ago are going back on my list of pain triggers.

I wrote this post because I'm especially interested in hearing from those of you who have been in a situation similar to the one I currently face. I want to hear your suggestions for coping with accidents and injuries that make your chronic pain worse.

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Wednesday, February 27, 2013

The Bad News About Student Loan Disability Discharge

What the .....!

A few weeks ago I wrote about the challenges of chronic illness.  One of the challenges is financial hardships, from huge medical bills to a reduced income potential.  For me, personally, I am currently considered permanently disabled and unable to work due to the symptoms of my multiple chronic illnesses.

Despite my numerous efforts to "get better," I've been disabled for over 8 years now.

When I first became disabled in 2004 with the chronic pain and fatigue of fibromyalgia, I thought my former employer's short- and long-term disability insurances would kick in with disability income so I could keep paying all my bills.  I didn't know back then that the long term disability coverage would terminate after 2 years because it limited benefits for those diagnosed with fibromyalgia.

I appealed their decision, I went through the entire appeals process and was unable to get them to reverse their decision.

I found out the hard way that my safety net had a huge hole in it.  I went from earning a living to living on disability and taking a 61% pay cut. How to continue making my monthly student loan payments became one more boulder on a growing mountain of financial problems.

I was grateful in 2006 for the relief my student loan servicer offered.  I asked for a temporary disability forbearance, i.e., to be able to temporarily stop making my loan payments.  Back then I still hoped my situation might be temporary, that my doctors' would be able to get me back on my feet and working again.

To that end, I diligently followed my doctors' advice and complied with all the things they wanted me to do: take medications, go physical therapy, agree to trigger point injections, schedule deep injections and try acupuncture.

Time passed.  All those treatments my doctors prescribed failed to improve my symptoms.  I rapidly approached the 3 year time limit on requesting temporary disability forbearance. 

My next option with my student loan servicer was loan forgiveness due to total and permanent disability.  At first, I was almost reluctant to take this option, mostly because it seemed like a big declaration of "I'm not ever going to get better!"  But I felt like I had no choice; our budget was already lean and there wasn't any money for us to start making payments again.

This was a separate application process.  I needed to have my doctor complete a form verifying that I was permanently disabled.  Now that filled me with trepidation.  Have you ever needed to ask a doctor to put into writing that you are permanently disabled?  Because when you do, they look at you like you're asking them to admit they aren't able to help you.

Apparently doctors aren't good at stating the obvious.  My doctor initially balked when I asked her, despite the fact that there was absolutely no improvement in my symptoms or functioning over the past five years.  She only agreed after she asked if I was on Social Security Disability.  Somehow knowing I was on SSDI made it O.K. for her to say I was permanently disabled.

I got what I needed.  But to this day I just don't understand the moral dilemma my request presented her.

Now you don't get your loan forgiven overnight if you are totally and permanently disabled.  There is a 3 year conditional discharge waiting period.  Fortunately, student loan payments are suspended during this time.  

I was OK with waiting for 3 years, because if somehow I did improve and was able to work again, I would have gladly started repaying my loan again.  After all, it was my student loans that picked up all the school expenses that my part-time job didn't while I was in graduate school.  Those loans helped me earn a degree that launched my career in social work, a career that I really and truly miss.

At the beginning of last year it was crunch time.  My 3 year conditional discharge period was coming to an end.  There was some very important paperwork I needed to submit to my student loan servicer and I ran into some problems getting it faxed to them.  I needed to resort to snail mail, sent certified, to confirm it got to them.

After the anxiety of filing out forms, getting my doctor to say I was totally and permanently disabled and dotting the i's and crossing the t's on the final paperwork, I got word at the end of Spring 2012 that my disability discharge had been approved.  I thought my worries about my student loans were over.  Thank goodness!

Then I got a 1099-C form in the mail this past January from my student loan servicer.  I wasn't expecting it.  So I did some research and discovered that my discharged student loan debt was reported to the IRS as income.

I don't remember my student loan servicer ever telling me that my discharged loan would be considered income.

So we did our taxes early this year, cringing at the thought that we would owe the Feds and the state money this year.  Money we don't really have.

Sure enough, we have a whole new financial problem on our hands. We are straddled with a new debt, payable on April 15th, that will accrue interest and penalties if not paid on time.  So despite my best efforts, it feels like that mountain of financial problems only keeps getting bigger and bigger.

I guess the only "good" news is that my student loan debt is relatively small, at least compared to the woman featured in this article: New Jersey Woman's Student Loan Debt Creates Tax Nightmare.  And I am not alone in dealing with this; it's my spouse's income that will be getting us out of this latest pickle.

But what can all those other disabled workers with student loan debt like Kim do? How can they be expected to pay huge IRS tax bills when their earning potential is reduced and their savings are spent on medical bills?  Some of them don't even file a tax return because they now live below the poverty line.  Just imagine getting a horrid surprise from the IRS saying you owe taxes on income that, well, you didn't really get when your loan got forgiven!

I know the powers that be want to make defaulting on Federal student loans hard and painful.  In fact, student loans have historically been excluded from bankruptcy proceedings.  But I think you'll agree that when it comes to total and permanent disability there really needs to be some legislative reform on this issue.

This is completely unfair and burdensome to the disabled. (Yes, I know...life is unfair, yada yada, yada.)

At the very least, how about telling folks up front about the tax implications of loan forgiveness?  Or offering to help by spreading the "income" across several different tax years to make the tax burden more manageable?

My unsolicited advice for those of you going through this process RIGHT NOW: talk to a bankruptcy lawyer.  Ask them if you can get your student loans discharged through bankruptcy so you won't get hit with a huge tax bill you can't pay. Because I hate to say this, but depending on the size of your loans and resulting tax bill, you might be filing for bankruptcy anyway...  But hey, take this advice with a grain of salt, because I'm not a lawyer or a student loan servicer, so what do I know?

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Thursday, February 21, 2013

Did It Work? The Results of My Hepatitis C Treatment

This is me. Watch the video clip below
to learn if I'm now Hep C free.


Hi, it's Selena from the blog Oh My Aches and Pains! and I'm recording this message today because I have arrived the end of my Hepatitis C treatment journey.

I'm here today to share with you the results of my six month post-treatment Hepatitis C viral load. So drumroll please! I remain undetectable; the Hepatitis C virus cannot be found in my bloodstream. The treatment that I underwent was successful and I am currently Hepatitis C free.

Now part of me is ecstatic about this news, and part of me, I think, is dealing with a little bit of disbelief. I mean I have lived with Hepatitis C for 24 years so it's a little surreal to think that that, moving forward, I'm no longer dealing with a life with Hepatitis C. Now it might take a little bit of getting used to, but I think eventually I'll managed just fine.

I do need to let you know that there is a 0.8% chance that the virus could come back. Again, that is 0.8 percent, but I think you'll agree that chance is very small, tiny, miniscule. In fact, it's so small that there is a group of people in the medical community now, who considered an undetectable viral load at six month post-treatment a cure. Hey, I can deal with a cure!

I also have other good news to report. When I got my viral load test drawn, I also got an A1C test done, which is a test you do when you have diabetes. A normal test result is 5.9 or lower for people who aren't diabetic. My has resulted was 6.3 which is pretty darn good, especially considering how much Hepatitis C interfered with my ability to manage my diabetes. I've been living in 7+ range for quite a while now.

Every day I'm getting a little bit stronger and doing a little bit better. I'm still not back to my pre-treatment level of functioning, but I'm definitely better, much better, then I was six months ago. It might take another six month, or it could take up to two years post-treatment, for me to finally start feeling like I did before I started treatment.

In terms of my chronic pain and my chronic fatigue, unfortunately I haven't experienced any improvement in those symptoms. Maybe it's too early to tell…and it's possible Hepatitis C really didn't have much to do with those symptoms.

But either way, treating Hepatitis C was the right decision for me and I have now eliminated any possibility of developing any Hepatitis C related complications. And that's a good thing!

So now that my journey has ended and I've gotten a good outcome, it's time to celebrate! And since many of you who have been supporting me through this journey are online with me, we're going to have the party online. I'd like to do a Google hangout where we can all join in on a video chat. I'm putting together some party favors for those who are attending as well as some giveaways like I promised.

I just need a little bit of time to get everything together and then we can celebrate!

So if you're watching this, you're invited. Look for more information on my blog or on Facebook about actual day and time.

And once again I want to thank every one you who has reached out to me to offer me support during this journey. It has really helped me get where I am today. And I'm very honest when I say I couldn't have done this without your support. And now it's time for me to pay you back. So if you need my help, you know how to find me. Please don't hesitate to ask – I'm here to return the favor.

This has been Selena from the blog Oh My Aches and Pains! and I am now living life Hepatitis C free.

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Tuesday, February 12, 2013

Does Chronic Illness Mess With Your Emotions?

To be honest, I've been in a crummy mood lately.  There are a lot of reasons why, but I'm afraid if I use this post to list all the reasons, it is just going to reinforce the grumpiness.  So instead, I'm going to explore the connection between emotions and chronic illness, because I think being chronically ill can definitely mess with your emotions.

The Challenges of Chronic Illness

Let's start by looking at the daily challenges of living with chronic illness.  I think it comes down to seven main sources:
  1. the physical challenges that come from living in a body that doesn't working properly anymore
  2. the reduced physical and/or mental capabilities that are the direct result of being ill
  3. the stress and fatigue of living with it day-in and day-out
  4. the need to adapt to fluctuating health status and changing medical care
  5. all the financial challenges, like huge medical bills and a reduced income potential
  6. the repercussions on relationships with family and friends due to the above challenges
  7. the impact living with chronic illness has on your self-image and self-worth
Chronic illness can seem like an endlessly deep and dark pit I could easily get swallowed up by.

Some days I cope better; others days not so much.   That's when I use all the strategies at my disposal, like:
  • having fun every day
  • snuggling with my pets
  • getting lost in a good book, movie or TV show
  • heading out to my container garden
  • dabbling in arts and crafts
  • getting hugs and a kisses from my husband 
  • connecting with others--especially others living with chronic illness too

The truth is I'd love to just get well.  Or just get Zen enough to rise above my problems to a place where they don't touch me.  Even a brief vacation from my troubles would be nice.  Too bad none of these things are truly possible.

So I muddle through and do the best I can do, which I know sounds cliché, but then really, what other choice do I have if I want to still get some good things our of life?

An Avalanche of Emotions

No matter how well I cope, I am still faced with living a life filled with daily challenges.  At times, life with chronic illness can be very stressful and full of tension, fear and uncertainty. Living under this constant burden, a few emotions are bound to come up!

Some of the ones I've become very familiar with are:
  • helplessness
  • frustration
  • loneliness
  • hopelessness
  • sadness
  • resentment
  • irritability
  • anger

Most people would say these are "negative" emotions or feelings.  Personally, I don't like to label them this way because it makes harder for me to deal with them.  What serves me best is to acknowledge that all emotions need to be felt and experienced in the moment to make room for the other emotions that will come after them.

In other words, you won't be able to feel the "good" stuff if you avoid feeling the "bad" stuff.

An Increased Vulnerability to Stress

Adding insult to injury, I know many of us live with chronic pain and fatigue conditions that affect how our brains and nervous systems function.  Or should I say malfunction. Our chronic illnesses mess with our bodies' ability to regulate bodily functions like our hormones, neurotransmitters, immune response and sleep cycles.

In short, chronic illness makes us physically more susceptible to the adverse effects of stress.

I know when I get excited about something good happening or get worried about something bad, my body takes those impulses and completely blows them out of proportion.  My wonky nervous system gets thrown into the fight-or-flight response: my heart rate goes up, I get revved up, I'm jumpy, my muscles are more tense, my stomach is upset and I have more problems sleeping. While I can understand this kind of physical response in reaction to worry and stress, I am still taken aback when this happens as the result of hearing good news or anticipating something fun happening.  I mean, how strange is that?!?

Even with the use my coping tool box filled with reassuring self-talk, meditation, use of my emWave and distraction, my body doesn't always calm down.  Sometimes I am forced to just ride it out until the event, feelings or circumstance that trigger the response pass.  In the meantime, I take even better care of myself with more schedule rest, fewer strenuous activities and more time in quiet, calming surroundings.

Rising to the Challenge

As you can see, chronic illness impacts a person physically, mentally, emotionally, spiritually, socially and financially.

It presents a constant stream of daily challenges.  It keeps me on my toes, pushing me to learn, grown, change and adapt as I do my best to cope. It is the source of my bad pain and fatigue days, many unpleasant feelings and my occasional melancholy.

But I do my best to fight back most days, finding the small comforts and pleasures I can still enjoy that connect me to what life still has to offer me despite chronic illness.

But not today.  Today I'm feeling the yucky stuff so I can get to the happy stuff that is just around the corner.

So does chronic illness mess with your emotions too?  Leave me a comment and share your experiences with me and your fellow readers.

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Friday, February 8, 2013

The Final Steps in My Hepatitis C Treatment Journey

I'm nervous.  Or is it anxious?  Either way I am out-of-sorts and, quite frankly, I just want the next 10 days to fly by as quickly as possible.

You see, I go for my six month post Hepatitis C treatment blood work this weekend and apparently I am all freaked out about it.

This is the big one.  These are the lab results that tell me whether or not the treatment I got worked.  When I get the results, I learn if I have achieved something called SVR, which stands for "sustained virological response."  With the new antiviral drugs, like the drug Incivek that I took, the medical community to starting to consider SVR as the marker for a "cure."

Now that's pretty heady stuff.

I don't expect bad news.  My three month post-treatment viral load came back undetectable.  Since that test is a good predictor of the six month post-treatment results, I expect that this next result will be undetectable too.

But I don't want to take anything for granted.

It's weird when you live with a chronic, active infection for 25 years.  Hepatitis C became part of who I was in a lot of ways I hadn't really considered until recently.  Not that I want to keep living with it--no way, no how!

I don't want to be contemplating the worse case scenario either.  You all know that treatment was really difficult for me and I certainly do not want all my efforts to be in vain.  I can't even think about having to do it again without feeling massively discouraged.

Becoming Hepatitis C free is such a HUGE deal...and I really want this so badly.

My body knows this is a big deal and I can feel it responding to my anxiety by overreacting.  This is nothing new to me.  My dysfunctional brain goes into overload mode in the presence of any ongoing stimulation, be it good news or bad.  That translates into increased insomnia, sensory overload, worsening symptoms, tachycardia and general grumpiness, physically, mentally and emotionally.  Which is really just another day living with the ups and downs chronic illness.

Which leads me to the next thing I want to share with you today...

I really want to be able to say to you that, since Hep C treatment ended, I have seen improvements in my health now that my viral load is undetectable.  That just hasn't happened yet, and frankly, I'm a little concerned that it isn't going to happen either.

Honestly, given how much hope for improvement several of my medical providers pinned on a successful treatment outcome, I feel tremendously let down.

I still live with chronic, debilitating pain.  In fact, I have more pain now than when I was on treatment.  Weird, huh?  I'm not exactly sure what that means, but I do know that at one time low dose interferon was considered a treatment for fibromyalgia.  

I still deal with chronic, energy-sapping fatigue.  Not sure if that just means my body needs more time to heal from treatment or if Hep C wasn't the cause of my fatigue.

My blood sugar is better, but I still have type 2 diabetes and probably will for the rest of my life.

Plus I've learned some disappointing information.  Seems Hep C can trigger things like fibromyalgia since the little buggers can get into your brain.  They turn on a switch that makes things like chemical reactions and neurally-mediated pathways go all wonky.  Unfortunately, getting rid of Hep C virus doesn't flip the switch off according to rheumatologist Mark Borigini, M.D in an article over at Psychology Today.  Rude little buggers didn't turn the lights off when they vacated the premises!

And I am still dealing with three treatment-related complications that need continuing medical attention.  Quite frankly, I am getting quite annoyed with these linger health issues and I am ready to switch doctors yet again in an attempt to get these problems resolved once and for all.

Oh, and I am having a hard time getting a follow-up appointment with my new internal medicine doctor.  She's the one giving me the the results of the lab work I am having drawn this weekend.  A scheduling snafu is one more aggravation I don't need right now.

Thankfully I do have another doctor (actually her nurse) who I can email and ask for the results.  Because I would hate to have to wait, and wait, and wait to get these lab results.  Any delay is going to make me want to tear out my newly grown-in hair.

Huh.  I guess I really do have a lot of reasons to be feeling stressed out and short-tempered lately.

I need chocolate and lots of hugs and kisses.  Good thing Valentine's Day is next week, which gives me the perfect opportunity to request increased quantities of all of these.  Thank goodness I have folks in my life who can give me chocolate, hugs and kisses.  So I guess my life isn't that terrible after all.

I'll let you know the outcome of my Hep C treatment soon.  (In the meantime, excuse my typos and incoherence due to sleep deprivation.)

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Tuesday, February 5, 2013

Surviving Cold and Flu Season When You're Chronically Ill - Part One

Time flies when you are sick in bed!  January is over and I spent most of last month being sick with the flu or recovering from it. With this season's flu widespread in most states and an epidemic is some, I'm not the only one who has gotten or will get ill. So let me share with you my strategies for dealing with viral illnesses on top of my chronic ones.

Part One: Planning Ahead

Vaccines:  In the past, I have gotten both the yearly influenza and the one-time pneumococcal vaccination for the bacteria family that causes pneumonia, meningitis and septicemia.

I usually do O.K. with the influenza vaccine, except for one year when I developed a massive migraine headache afterwards.  That made me hesitant to get the shot the next year, so I skipped it.  I did muster up the courage to get vaccinated in 2011 and did O.K. once again.

This year, I was unable to get vaccinated in Fall 2012 for the current flu season because of other medical problems I was dealing with post Hepatitis C treatment.  Needless to say, once you get sick, getting the vaccine is pointless.

It is important to know that you should get vaccinated when you are feeling healthy and postpone the shot when you are sick.  There is a vaccine that is administered as a nasal spray that contains live virus (LAIV) and people living with certain health conditions like diabetes should not get this type of vaccination. Due to allergies and severe vaccine reactions, some people should not get vaccinated at all.  You can read more about flu shot precautions and contraindications at the CDC website.

Antiviral Medications:  There are antiviral medications available by prescription only to treat the flu.  They work best when taken within the first 48 hours of flu symptoms.  Which means you need to know what the symptoms of the flu are  and get in to see your doctor right away.  Better yet, talk to your doctor at the beginning of Fall, before flu season starts, and discuss having the medication, or a prescription for it, on hand just in case. Read more about antiviral medications for treating the flu at WebMD.

Sick Day Plan: If you live with diabetes, chances are your endocrinologist has already talked to you about developing a sick day plan.  This is also a good idea for the rest of us living with chronic illnesses too.  Creating a plan involves talking to your doctor about specific actions to take when you get sick.  Here are some question you might ask:
  • What symptoms are O.K. to treat with self-care at home and what symptoms need a doctor's attention?
  • What symptoms can be handled with a phone call and which ones need to be treated in the office, at the Urgent Care clinic or Emergency Room? 
  • What cold or flu remedies do I need to be avoided to prevent drug interactions?
  • Should I keep certain medications, like anti-nausea pills or suppositories, nasal sprays, inhalers and/or antiviral flu medication on hand?
  • Where should I go for medical care after-hours on the weekend and evenings?
Wash You Hands: The number one way to prevent getting the flu is to wash your hands, especially when you return from public places like the grocery store, restaurants and, yes, even your doctor's office.  The second is to train yourself not to touch you face with your hands, which is how the virus usually gets into your eyes, nose and mouth where it likes to hang out.

Stock Your Cupboards and Medicine Cabinet:  The last thing you want to do when you are sick is make a run to the drug or grocery store.  Make a point of checking on what cold remedies and fever reducers you have, especially the expiration dates, and make a list of what you need at the beginning of Fall.  You may also want to buy a stash of quick-to-prepare sick day foods like electrolyte replacement drinks, shelf-stable juices, tea, canned soups and crackers to have on hand as well.

Next time I'll discuss strategies for coping when you do get sick and how to get better as quickly as possible.

PLEASE NOTE:  The intent of this article is to provide general health education information and is not a substitute for professional medical advice.  When in doubt, consult your doctor for the care that is right for you.

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Friday, February 1, 2013

Where I Stand Today on Using Alternative Therapies to Treat Chronic Illnesses

I used to be a consumer of alternative health services like acupuncture, homeopathy, nutritional consultations, body work and chiropractic. I started using alternative therapies in 1995.  Back then, I had a lot of medical symptoms that I didn't feel were getting adequately addressed by my primary care doctor.  I shared my frustration with an acquaintance and he suggested I try seeing his chiropractor that was helping him live well with HIV.

What can I say? After that glowing review I had to try this approach too.  And try it I did for over 15 years.

 But then about two years ago I read the blog post Let Us All Praise Medical Woo and started feeling really stupid about spending so much money out-of-pocket on alternative health care.  That post made me realized that I got sucked into a branch of the healthcare system that appealed to my unmet medical needs but ultimately delivers little in the way of health in terms of care or results.

 So for the last two years I've given up seeing alternative health providers and the only thing I have really missed is the occasional chiropractic adjustment.  What I have gained is more money in my pocket, which has translated into fewer arguments with my spouse about our budget, or rather, my inability to stay within ours due to my medical-related expenses.

I've also stopped beat myself up for being so gullible.  Because heck, even the Federal government has allocated money to alternative medicine via the National Center for Complementary and Alternative Medicine (NCCAM). This agency is tasked with figuring out which alternative treatments really work in the hopes of making a difference in medical outcomes.

If you head over to their website and look under research results, you'll see a lot of reports with the word "may" in them, like this one: Acupuncture May Be Helpful for Chronic Pain: A Meta-Analysis. Not exactly a stamp of approval or scientific proof of effectiveness, but perhaps enough to convince someone desperate for pain relief to give acupuncture a try, even if their health insurance doesn't cover it.  Which is where the danger of alternative health lies.

In my experience, alternative health practitioners sell hope.  They do this by convincing patients that they can get better if they pay for treatments, herbs, supplements and nutritional advice over the course of months and even years.  But there are few scientific studies that support the notion that alternative treatments can treat or cure specific diseases or illnesses. When it comes to embracing the hope that alternative therapies seem to offer, I know I'm not alone.  In the United States, consumers spent $34 BILLION dollars out-of-pocket on things like acupuncture, therapeutic touch and nutritional supplements in 2009.

By the way, I do still take nutritional supplements, some of the same ones that were recommend and sold to me by the alternative health practitioners I used to see.  But now, I skip the expense of an office visit to get these products "prescribed" to me. 

In retrospect, none of the alternative health professionals I saw claimed to treat or cure any of the specific illnesses I had.  When I first starting seeing them in the mid-1990's, they spoke to me a lot about enhancing my well-being and returning my body back to a state of health.  But after I started living with chronic pain and fatigue in 2004, and it started becoming clear that their treatments weren't really helping, some of them got as frustrated as I was about how I wasn't getting any better.

So some decided to ramped up their efforts, which only made me feel worse, not better.  That made it easy for me to decide stop seeing them.  Others blamed my use of medications--the ones prescribed by my doctors--as the barrier to achieving wellness, even after I explained how they were helping me manage my illnesses.  When it was suggested I need to cut back or stop them, I decided it was time to stop the alternative health treatments that weren't helping me instead.

Between the expense and the lack of results, it was easy for me to finally stop all alternative treatments about two years ago.

With the benefit of time and distance, I've come to see using alternative medicine to treat chronic illness as similar to putting a bandage on a deep puncture wound. I think it's the wrong-sized treatment for your health problems. When you are chronically ill, you don't need health enhancement, you need to regain your health.  From where I stand now, I just don't think alternative health practices can do that.

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Tuesday, January 29, 2013

Saying Goodbye to a Chronically Awesome Friend

"Live fast, die pretty."  That's what one of my chronically awesome friends used to say.  Used to, because she died this past Sunday from complications of her multiple chronic illnesses.

As I sit here trying to catch up via social media to find out just what went wrong, I see once again that she and I share two of the same illnesses: fibromyalgia and liver-related diseases.  These are the reasons we connected over two years ago on Twitter.

Then when I shared my adventures of going to the Mayo Clinic in Arizona for my dysautonomia work-up, she followed with interest because she was thinking of making the same trip to get her assorted illness worked up and her treatment better planned and organized.

In the end, we both agreed:  our illnesses sucked and the time and expense of traveling to the Mayo Clinic for a workup and recommendations was well worth it.

Now I don't want you to get the wrong impression--we were really just acquaintances.  I am not privy to the details of what lead to her recent departure. What I do know is that she had been in and out of the hospital during the last several months and receiving home health care in between.  A mutual friend shared that she thought she might have picked up an infection while in the hospital that, in the end, her chronically compromised immune system just couldn't fight it off.

Her close friends say that she died a fighter and a warrior, comforting her friends to the end.  I see the evidence in her social media footprint that she knew the Grim Reaper was close, but she managed to stay several steps ahead of him up to the bitter end.  She relished her wins against him.  And she relished her last birthday in November and the recent Christmas holidays, events she was able to enjoy despite his presence offstage, lurking about in the wings.

I know her friends and family find comfort in the fact that with her death, her pain and suffering have ended.  I acknowledge this as well.  But I am also upset that in life she wasn't able to find the pain control and disease management she needed to have an acceptable quality of life and to stay alive a while longer. I know that these were issues she struggled with for years.

Which leads me to ask demand: when will medicine truly alleviate our pain and suffering?  Because I know I don't want death to be what finally takes away my chronic pain, chronic fatigue and the assorted other symptoms of my chronic illnesses.

Before chronic illness destroyed her healthy life's plans, my friend was a honest-to-goodness, real life ballerina.  So today it gives me comfort to think that she is finally able to dance again.  Yes, she is dancing in heaven...

Goodbye my friend.  Rest in peace.

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Monday, January 21, 2013

Will You Be Able to Afford Your New Health Insurance?

Last November I wrote about my displeasure with the changes coming in 2013 to medical flexible spending accounts (FSA), the result of more provisions of the Patient Protection and Affordable Care Act (PPACA), a.k.a. Obamacare being implemented.  But those aren't the only changes looming on the horizon.  2014 and 2018 are also years when more big changes are coming.

Increased Out-of-pocket Medical Expenses

I was quite taken aback when I found out the ceiling on health plan out-of-pocket expenses will rise to $6,000 for individuals and $12,000 for families starting in 2014.

First, let's answer the question: So what are out-of-pocket medical expenses?  They include things like deductibles, co-insurance, premiums and co-pays; they are the "cost-sharing" provisions in your health insurance plan.

I logged into our health insurance plan's website to see what our out-of-pocket maximums are for this year and discovered they are no where near the new 2014 $6,000/$12,000 limits.  Then I got worried.  What if my husband's employer decided to raise the out-of-pocket maximums to the new limits in 2014?  How much would we have to pay out-of-pocket before our health insurance benefits actually kicked in?  And how are we going to be able to afford to pay these higher out-of-pocket medical costs?

Harder to Deduct Medical Expenses

Adding insult to injury is that fact that this year, deducting itemized medical expenses on your Federal taxes is going to be much harder.  Before, you could deduct any expenses that where higher than 7.5% of your adjusted gross income.  Starting in 2013, that percentage rises to 10%.

So we are facing higher out-of-pocket medical expenses and a reduced ability to deduct them on our taxes.

New Trend: High Deductible Health Plans

So how did our legislators decide on these new out-of-pocket medical expense guidelines?  They were set based on rates associated with high deductible health plans.

According to Kaiser Health News, high-deductible plans are becoming the new trend in health care coverage. They say that Fortune 500 companies like General Electric, Chrysler, Wells Fargo, American Express, JPMorgan and Whole Foods are all switching the health plans they offer their employees to this model.

Historically, most people who got a high deductible health insurance were healthy.  They didn't think they'd need to use their health insurance, so they choose this option "just in case" something might happen.  Hence these plans were sometimes called catastrophic coverage plans.

Employers like these plans because it means they can contribute less to their employees' health care costs.  In the changing world of health plans, these kinds of plans are now being viewed as "consumer-driven" which adds to their appeal.  Here's how this thinking goes:

If the employee has to pay with their money first to get medical care, then they will:
  1. take better care of themselves to avoid needing medical care 
  2. be more concerned about medical costs and 
  3. opt out of unnecessary tests and procedures when they do go to the doctor

Are These Changes a Recipe for Disaster?

O.K., so I have some questions and concerns.

How is the average patient supposed to "shop" for low-cost, quality medical care when this kind of information is currently not available?  And how are patients supposed to know what medical tests and procedures are needed and which ones aren't?

What will we have to do?  Take our laptops with us to medical appointments and use Dr. Google to figure out if what we are being told is the standard of care?  Or worse, delay care so we can research the alternatives before making a decision?

I think this high deductible health care model is so unfriendly to those of us with chronic illness!  How we all *wish* it were as easy as just "taking better care of ourselves."  We need to see our medical providers just to maintain what reduced quality of life and level of function we do have.

Plus is lower cost medical care really the answer for people living with chronic illness?  Many of us started with general practitioners when we first became ill and quickly learned that we needed specialists in order to get accurate diagnoses and treatments.  Specialists will cost more to see, but in the long run, they are often the only ones who possess the knowledge, expertise and skills needed to keep us stable and functioning to the best of our abilities.

How I View These Newest "Reforms"

So we are all going to be mandated to pay for medical insurance.  Then we are going to have to pay high out-of-pocket costs to access the health care system before that medical insurance kicks in and starts actually paying the bills.  Which means some people will have a whole new problem--will they be able to afford to use their new health insurance?

I think offer health plans that erect financial obstacles to obtaining necessary medical care is ridiculous.  How does this make any sense?  I think these new guidelines and trends will mean that people will forgo medical appointments when they don't have the money to pay out-of-pocket expenses.  And when people put off seeing a doctor because they can't afford it, this increases the number of health complications, trips to the emergency room and hospitalizations.

So is health care reform really helping us or just making things more difficult and complicated?  I have serious doubts that this will make health care more accessible or affordable.  I'd love to hear what you think.

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Monday, January 7, 2013

Ready to See Where Life With Chronic Illness Will Take You in 2013?

Wow, time sure does fly!  I can't believe that 2012 is over already.  Really.  I feel like I got so little done and missed out on a lot of things last year because of Hepatitis C treatment.

I am so looking forward to this new year and:

Health Stuff

  • fully recovering from Hep C treatment aka chemotherapy #2
  • getting the final results of my Hep C treatment in February
  • seeing what health issues and limitations I am left with once I am Hep C free

Life Stuff

  • getting more things done at home--nine months of neglect and my house is a disaster!
  • getting out of the house more often
  • returning to a regular schedule of blogging and writing
  • heading back out to my container garden and sharing my adventures at The Seated Gardener
  • seeing if I can turn my hobbies into an Etsy empire

Now this is going to be a process, like going on a trip.  I start where I am today, point A, and keep moving forward, for the most part.  I don't really have a destination, at least not one I am 100% sure I can reach, so I'm traveling by Zen navigation this year.  I wonder where I will find myself by the end of the year!

As with every trip, there are road signs, traffic lights and rest stops along the way.  Here are the ones I am going to pay extra special attention to:

  • The green light:  Every day I am inching closer to my previous level of functioning, around a 30 out of 100, which IS something to celebrate.  Yippee!
  • The yellow light:  This is a delicate balance, finding my new baseline. So I have given myself a generous 6 months more of recovery time, plus or minus another 6 months!
  • The red light:  We all know how easy it is to over-do things and wind up paying big time for pushing our limits too hard, too fast and/or too frequently. So I need to be CAREFUL and keep using the coping skills that have served me the best: planning, pacing, resting, saying no and having some fun every day.  

You can tell that this sick chick has learned some lessons from 8 years of life with disabling chronic illnesses...

To tame my enthusiasm and avoid getting myself into trouble, i.e. more pain, fatigue and flare-ups, I'm using some new tools this year:

1)  Evernote: this is a cloud-based note-taking and file-organizing program that I can access on my computer, Kindle and Andriod phone.  I use it two ways: for my blogging/writing (posts, ideas and book chapters) and for collecting and storing items of interest and inspiration I find online.  While using it on a computer, you can clip almost anything to Evernote, from a recipe, crochet pattern or photo to an entire article or blog post. You can also attach voice notes and files to your notes.  Plus check out Clearly for reading webpages much more easily.

Evernote has helped organize my thoughts and ideas into one place, and it's a place where nothing ever gets lost!  Plus my stuff can be read, searched and accessed from almost anywhere, which is part of the Evernote philosophy: my data is mine, it is protected and it's portable.

2) Astrid: since I have been ill, I've avoided using traditional "to-do" lists because, well, they make me feel like crap when I fail to accomplish my tasks and goals.  But Astrid takes the list to a whole new level, one where this funny little red octopus gives you gentle reminders and sweetly encourages you to get things done.  Plus Astrid wants you to make all kind of lists, like books to read and movies to see...you know, fun stuff.  And she gives you the option to delegate a task to someone else (yes!) by sending it to one of you contacts.  Watch out, hubby!

I have been using Astrid to facilitate my famous "brain dumps"  and get a handle on all the things I want to do now that I have more energy to actually think about and do things.  Now I just need to be practical and reasonable by setting very generous due dates on the things I choose to work on and letting most other things sit for just a while or two longer.

So what about you?  Are you ready to hit the road and see where 2013 takes you?  What road signs are you going to be heeding more closely this year? What companions are coming along with you that will make your trip easier?  I'd love to hear about your plans, so leave me a comment.

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