"Sick on Top of Chronic" - Please Send #healingthoughts to Laurie

It's always bad news when you hear that someone is "sick on top of chronic."  You know, when a chronically ill friends catches a cold, flu, stomach bug or other infection.

Because of chronic illness, it's much harder when the chronically awesome get sick. Ordinary, everyday, garden-variety infections often morph into horrific acute illnesses that require medical intervention.

For example: this year, a lot of my chronic friends became sick with the flu.  That's probably because this year's flu shot was less than effective.

OK, so that explains why they are getting sick. But I keep seeing post after post on Facebook from my friends sharing that their flu lingered on for weeks.  Some of them developed pneumonia.  One person needed to go to a rehab facility for a few weeks in order to fully recover.

The most unlucky of them all is my friend Laurie who blogs over at HibernationNow.  She got the flu in early February.  Then she got pneumonia.  Then it morphed into a serious and life-threatening condition called Acute Respiratory Distress Syndrome (ARDS).

At least that's my best guess based on what I am hearing second and third hand.  I can't talk to Laurie about it because she is in a hospital in New York City, on a ventilator and in the ICU.

Her husband describes her as being "gravely ill."  This past week she hasn't been getting better, but she also hasn't gotten any worse.  It might take weeks or months for her to really get better.

Honestly, I am in shock.  If I think about Laurie's situation for more than a few seconds, I can't help but start crying.

I wish I lived closer, I wish I could go visit her.  I know she is sedated, but I just want to hold her hand and tell her that everything is going to be OK if she just hangs on and lets her body take it's time to start healing.

This whole situation also makes me really angry.

I know that viral illnesses are contagious and there is no cure for them, but I think there are more things that everyone can be doing to prevent them for spreading.  Things like:

• washing your hands
• staying home from school and work if you are sick, especially if you are running a fever
• getting a flu vaccination (even if it isn't a perfect match for this year's strain)
• eating well and exercising to build a strong body that can resist the flu

My point is that each individual's health is part of the greater public health.  If you get sick, there's a good chance the people around you are going to get sick too.  Conversely, if you stay healthy, then the people around you have a good chance of staying healthy too.

And believe it or not, flu vaccines help keep everyone healthy.

When you get a flu vaccine, you not only decrease your chances of getting sick, you contribute to something called "herd immunity."  Here's how it works: the greater the number of people immune to the flu through vaccination, the less likely the transmission of the flu to a person susceptible to it.  That means the likelihood of someone who can't get vaccinated getting the flu is greatly reduced.

Even when the vaccine isn't a perfect match, it can still prevent severe cases of the flu and complications from the flu. Subsequently, it can make the virus you pass on less effective at making someone else sick.

Honestly, I wish the "herd" around me, and Laurie, was more health conscious.

All I can do for Laurie now is send her healing thoughts and ask you to do the same.  Her present condition is very serious and her recovery is going to take a really long time. It will be measured in months, not days.  So if you believe in the power of prayer, please keep Laurie in yours for the foreseeable future. 

Hang in there Laurie.  Everything will be OK.

What's Wrong with Healthcare: Getting a Pain Pill Prescription Filled

You want me to fill your prescription?!?   

This series of posts has been a long time in the making.  This year marks 10 years since I started my not-so-new life with daily, disabling chronic pain and fatigue.  I have a multitude of mixed feelings about this milestone, as does my hubby and everyone else who knows and loves me.


As I mulled over my situation yesterday, I realized that, among other things:

1. the current health care system can't fix me or make me even a little bit better
2. I am not happy with much of the "health care" I receive
3. the health care system doesn't know how to care for people with chronic illnesses
4. my initial assessment that health care reform wasn't going to effect me was WRONG
5. I believe there are things my health care providers could be doing for me, but the culture within the health care system often prevents them from providing me with care to relieve my pain, symptoms and stress from chronic illness

Which brings me to Rant #1.

Can You Fill My Prescription?

After years of living with pain and struggling when my pain flares up, I found a pain medicine physician who believe in palliative care, i.e care to relieve my pain, symptoms and stress from chronic illness.  She prescribes narcotic pain medication for me.

I got my second prescription for morphine in mid-January 2014.  I took it to the pharmacy where I got my first prescription filled. When I presented my prescription at the drop-off window, I was told that 1) they didn't have the medication in stock and 2) I needed to check back with them at the beginning of February to see if they get it back in stock.

Really?  I have to wait 2 weeks to get my prescription filled.  And you won't even do me the courtesy of calling me to let me know when you have it? That's not great health care.

Let's Try This Again.... 

So then I get the flu.  And I get busy with a bunch of other doctor's appointments.  I wasn't so low on my pain medication that I needed it right away, but I didn't forget about getting the prescription either.  So it's February and I'm at the pharmacy picking up another prescription, and I remember to ask if my pain medication is in stock.  The pharmacy tech tells me yes, but then I realize that I forgot to bring my prescription!  Ugh.

So some more time passes before I finally find myself back at the pharmacy.  And this time I have my prescription in hand.  Yay me!  I present my prescription again, and again I am told it is out of stock.

Well this time I won't take that for an answer.  I ask the pharmacy tech to order it for me.  She tells me they will "try" -- no guarantees -- and I need to call them or come back on April 2nd to see if the medication has come in.

Really? Again?  This is b***s***.

The Reasons Why My Prescription CAN'T Be Filled

So I talk to the pharmacist.  He tells me:

1) they don't keep this in stock because it's a lower dose than what most patients are prescribed
2) they have problems getting this dosage from their supplier
3) they are the 4th busiest location for this chain and their store has problems keeping this dosage of morphine in stock because of the volume of business they do

Blah, blah blah.  Wait, did he just tell me if I was taking a larger dose of morphine he could fill my prescription???

Then I asked if he could call another location to see if they have the medication in stock.  The pharmacist refuses, stating that 1) other locations won't give him that information over the phone and 2) another location would find it suspicious if he called them asking for this information.

W.....T......F!

It's Complaint Time

Here is the thing.  Right by the drop-off counter is a Notice to Consumers poster from the California State Board of Pharmacy.  The poster says:

"This pharmacy must provide any medicine or device legally prescribed for
you, unless:

• It is not covered by your insurance;
• You are unable to pay the cost of a copayment;
• The pharmacist determines doing so would be against the law or potentially harmful to health.

If a medicine or device is not immediately available, the pharmacy will work with you to help you get your medicine or device in a timely manner."

So when I get home, I head over to California State Board of Pharmacy website and I file an online complaint.

I also head to the chain pharmacy's website and fill out an online complaint there too, letting them know I filed a complaint with the Pharmacy Board as well.

So Will I Ever Get This Prescription Filled? 

Really needing to get my pain medication ASAP, I call another location.  I know this chain's policy is NOT to tell callers if they have narcotic medications in stock because they are afraid of being robbed.  So I start by giving my name and phone number so they can look me up in the system.  Then I ask if the medication is in stock, letting them know I tried to fill my prescription at another location and was unsuccessful. 

I get lucky.  A very nice man puts me on hold, checks, comes back on the line and tells me they have it.  But I guess I won't know for sure until I get my hubby to take me there tonight.

I think there is something really wrong with healthcare if it takes this much time, energy and effort to get a pain medication prescription filled.

Why I Blog About My Life with Chronic Illness

Me, blogging from my couch

I haven't thought about this subject for quite a while, but I am writing about it for a good cause.  When I am done, I will be submitting this post to a blog carnival over at Restoring Quality of Life: the official blog of the Partnership for Palliative Care.

I've done so much sharing here for over 6 years now.  While I was a bit hesitant when I first started, I honestly don't give this topic a second thought anymore.  In fact, when I'm not able to post as often as I would like, I actually feel like something is seriously missing in my life. And from comments I get, I know my readers miss me too when I post less frequently!

So with the power of hindsight behind me, I put my thinking cap on and uncovered 3 main reasons why I continue to share my struggles with chronic illness so publicly. 

Reason #1: To Connect with Others

Ten years ago, I was a very outgoing and social person.  I loved going out with my friends to concerts, dance clubs, restaurants and the movies.  I loved going shopping all by myself for hours at the mall.  I bowled with my hubby in 2 leagues at our local alley, meeting many new friends.  I was someone who didn't mind driving all around town to meet up with friends and visit interesting places!

Ten years ago, I was a clinical social worker with 11 years work experience.  I worked full-time and I interacted with lots and lots of people every day.  At my last position, I even volunteered for the events committee, planning workplace parties and other fun activities with and for my co-workers.

Then 2004, a trip-and-fall accident resulted in the chronic pain and fatigue of fibromyalgia, which took all of these things, and more, away from me. 

Now, leaving the house to do something fun with my hubby or friends is like running a marathon.  It makes my pain worse, it disrupts my fragile equilibrium and it often pushes me beyond my limits.  The unavoidable increase in pain and fatigue makes me feel physically awful and mentally anxious and irritable. In those moments of increased symptoms, I find myself cursing my chronic illness for the devastating effects it has on me.

So I decided to start sharing stories about my life with chronic illness through a blog and on Twitter.  Like a fisherman's net, I threw myself out there to see if I could connect with anyone.  And through the magic of the Internet and the act of sharing my thoughts, feelings and experiences in a search engine friendly format, I attracted others to my blog and Twitter account.  Over time, my posts and tweets became my ticket to the online chronic illness community. 

And just like that, I started meeting new people and being social again in ways that fit with my "new" life.

Reason #2: To Share the Illness Experience

When I began my "new" life with the chronic pain and fatigue of fibromyalgia, I wasn't quite sure what to do.  Initially, I looked to my medical providers to diagnose my illness and prescribe some kind of treatment that would get me back to normal.  As the weeks turned into months and the months turned into years, it started becoming clear that my doctors were going to be able to fix me. 

Thinking back to my cancer experience 16 years before, I realized that to live my best life with chronic illness, I was going to need the support, wisdom and guidance of other people living with fibromyalgia and chronic pain to help me figure out what to do next. 

In 1988, I was lucky to find a young adult cancer survivor group after I finished my leukemia treatment.  They helped me make sense of my cancer experience and find the strength and courage to put my life back together after it was so completely disrupted.  I learned that sharing about my illness with other people helped motivate me to turn life's lemons into lemonade.  And listening to the stories of others in similar situations to my own, about their struggles and successes, helped me to accept and master my own illness experience.  Positive peer influence and support for me are magical, life-affirming gifts.

So with this new challenge facing me, I started looking for an in-person support group.  Much to my dismay, I had no luck!  Then I realized that if other people living with fibromyalgia were like me, attending a weekly support group might be a nearly impossible task. 

Then a "healthy" friend introduce me to blogging, Twitter and Facebook.  Wanting to make new friends and new connections, I drove in and gave social media a try. 

Six years later, social media is a permanent part of my life.  I've learned how to ask for support and, in return, give support to others in these virtual groups and forums. I simply can't imagine my life without this unique way of sharing my illness experience.  I feel I am truly part of a community that is accessible, convenient and, most of all, caring.

Reason #3: To Give to My Hubby and IRL Friends Some Downtime

This might seem strange, but having multiple sources of support in my life not only makes my life better, it makes life better for my hubby too.  Because let's be honest: the people who live with us and/or interact with us the most really need to have a break from us and our chronic illnesses every now and again. 

Being the social person that I am, it is in my nature to want to share everything with my hubby and my friends.  I'm not shy about asking for a compassionate ear when I need a little understanding, empathy and support.  But since the illness I am dealing with is chronic, i.e. an illness that I will live with for the rest of my life, there is a real risk of burning out my support system from overuse.  I care about my hubby and my friends too much to let that happen.

With support needs that are sometimes big and definitely ongoing, I know I need more than just a few people "in real life (IRL)" to lend me an ear when I need one.  Thankfully I've found the extended support network I need in the virtual communities that social media is able to create and support.  I can access this support any time, quickly and easily, through my computer or smartphone.

Final Thoughts

As with all things in this life, social media isn't perfect.  I've encountered misunderstandings, miscommunications, hurt feelings (mostly unintentional), meltdowns and even the occasional fight.  Social media can be intimidating at first and there is definitely a learning curve.  I found it easiest to observe more and interact less at first, a.k.a. be a lurker.  But since most of the rules are literally unwritten, I found the "watch and learn" approach worked best for me.

That said, for the most part, I've found the chronic illness community to be wonderfully polite, supportive, accepting and caring.  But then again, most of us participating in this community have a shared purpose: to live our best lives despite chronic illness.  I think this really helps keep the conversations and interactions focus and helpful.

Now if only I could find a way to meet all my lovely new friends living with chronic illness in-person!

Love -- In Sickness, not Health

Happy Valentine's Day!  I can't think of a better day to talk about how chronic illness affects my most important relationship: the one with my hubby of over 15 years.

Robert and I met when I was a freshman at UCLA in 1984.  He and I were friends in 1988 when I was diagnosed with leukemia.  While he didn't see much of my day-to-day struggle with month-long hospitalizations and chemotherapy treatments, he also didn't vanish like some of my other friends and family members did.

In 1990, when he first told me he loved me and wanted to go out with me, I freaked out.  Between getting dumped by a boyfriend one month into cancer treatment and trying to cope with the changes life after cancer brought me, I wasn't ready to start dating yet.  So I politely told him no.

Luckily for both of us, I changed my mind 5 years later when we reconnected and rekindled our friendship.

Today, looking back on our 15 years of marriage, I've just realized that I've been living with chronic illnesses severe enough to make me unable to work for almost 10 years now.  So 2/3 of our marriage has been with my sickness, not health.

I told Robert when we started talking about marriage that there was a *possibility* that my health could get worse. We both knew I had chronic Hepatitis C infection, yet ironically, that's not what has disabled me for the last 10 years.

And not even a year into our marriage, I was faced with a new health concern.  I was diagnosed with type 2 diabetes, which isn't causing me any serious problems at the moment, but does require a lot of effort on my part to manage it with diet, exercise, medications and follow-up medical care.

No, the big change happened in 2004 when a trip-and-fall accident started my journey with the constant, severe pain and debilitating fatigue of fibromyalgia.  That accident also worsened a pre-existing, but not yet diagnosed, condition that had been around since the end of my cancer treatment -- dysautonomia.  I've also developed new health problems, like sleep apnea, which is associated with fibromyalgia. Honestly, chronic pain makes all my other health problems worse, in various degrees, and makes managing them all more challenging too.

The other day I read a poster that said, "It's true that pain changes people. Not everyone knows this, not everyone sees this truth. Pain makes you let go of things you'd rather be doing. Sometimes it's OK that the only thing you did today was breathe. Pain changes you.  But it can also make you stronger."  Well, Robert's had an up close and intimate view of all the ways that pain has changed me...and he's seen a lot of unpleasant, undesirable and uncomfortable things in the last 10 years. 

Let me be frank and to the point.  I'm less frequently my cheerful self when my pain, fatigue and sleep-deprivation are at high levels.  I need more help now and Robert is the one around who can help me.  As much as I plan, pace, schedule, restructure activities and rest, my ability to participate in life's activities, from mundane daily chores to fun special events, is highly unpredictable.  No wonder my hubby gets irritated with me, or rather my chronic illnesses, sometimes.

My chronic illnesses don't just effect me physically; chronic illness affects my concentration and memory too.  Brain fog makes me forgetful, even when he just told me what he needed me to do.  Try asking for help when all of a sudden you can't remember the word for the object you need your spouse to bring to you!

If I fall apart, physically, mentally or emotionally, it is Robert who is usually there to witness it.  If I have a bad day, it impacts him the most.  If I am in a really bad mood, he's most likely to caught up in it.  If I can't do something, he's the one that will have to do it instead.

Yes, we have avoided being part of the statistic that shows 75% of marriages in which one spouse has chronic illness end in divorce.  But no, our marriage hasn't always been easy.  Ask Robert and he'll tell you we've had more than our fair share of bumps (or mountains!) in the road. 

How have we done it? I think being friends for 14 years first and then dating, getting engaged and married helps.

I try to always be polite when asking for his help and grateful for the things Robert does for me. I try to tell him thank you frequently.  I've learned to take a "time out" and retreat from his presence if I am really out-of-sorts.  And I take the time to explain what is going on with me, often multiple times, until he really seems to understand.

Between explanations and witnessing my behavior over the last 10 years, I think he now really knows what is up with me -- sometimes better than I do!

One thing I've needed in the past several years is his help driving me to doctors' appointments.  I have to say going to my appointments and being in the examination room with me has really been an education for him!  He is now very annoyed that all the medical doctors and all the medical specialists can't put his wife back together again.

Finally, one thing that is both endearing and frustrating to me is his insistence that I do as much as I can myself.  His urging is a good reminder that there are activities and better days when I can still do things without his help.  Of course, when I need his help and he can't see that, it's quite frustrating.  But I think it shows that he hasn't given up hope that one day I'll be the Selena he fell in love with again. 

I hope some day I can get better too, for myself and for him, because living and loving with chronic illness makes it hard for both of us.

Five Flu Survival Tips for the Chronically Ill

Fourteen days ago I got the flu from my husband.  Seems the virus has invaded his workplace and many of his co-workers are sick too.  Of course, instead of staying home and taking care of themselves, some of his co-workers continue to go to work and spread the flu to others! 

I know it was serious this year because my husband actually took sick time and stayed home. 

Unfortunately for me, it it pretty much impossible to avoid getting sick when you live with someone who has the flu. 

Tip #1: Get a flu shot

Yes, I did get a flu shot this year.  Personally, I am thankful that I did, because here in California, this year's flu outbreak is serious.  The flu has killed almost 200 people this year in my state and is hitting the 18 to 49 year old age group the hardest.

In the past, I have debated over whether to get the flu shot or not.  My reluctance stemmed from a flu shot I got back in 2007 which resulted in a massive migraine headache about an hour or so afterwards.  Looking back, I think the real source of the headache was that the injection was made into a trigger point, which aggravated it and caused the headache.  Now I ask the nurse to poke around first and select a site that isn't too painful.  This strategy has prevented a repeat post-flu shot headache.

Talk to your doctor about the pros and cons of getting a flu shot.  Because if you have pre-existing medical conditions like me, getting the flu can be serious, even life-threatening. 

Even with the shot, you can still get the flu like I did this year.  But I believe getting a flu shot this year prevented me from developing a more serious case of the flu and helped me avoid flu-related complications and hospitalization.

Tip #2: Get your family flu shots too

This year, my hubby had a "light bulb" moment.  "I should get the flu shot too, should I?" he said to me.  "Yes, you should," I replied.

While I am grateful he (finally) had this insight, secretly I just wanted to hit him over the head.

The flu is contagious. That means it can be passed from person to person when the virus becomes airborne through coughs, sneezes and even just talking to someone.  Plus if people touch their noses and mouths, they will transfer the virus to their hands -- and our hands touch almost everything around us.  Once you get the flu, you can spread the infection for 5 to 7 days.

So perhaps the best thing to do is convince those around you to get the flu shot too.  It might be hard to convince them, but don't give up trying.  Your family needs to know that the flu shot helps create a barrier around you that can keep you healthy.

In the past, my hubby said, "I don't get the flu and I have never gotten a flu shot."  Clearly that didn't happen this year...which has lead to his change of heart.

Tip #3: Slow the spread of the virus

Things like hand washing, covering your cough or sneeze with a tissue and disinfecting surfaces can help prevent the spread of the flu.  Using hand sanitizer when you are out and about might be helpful too.  Training yourself not to touch your face with your hands, while hard to do, can prevent the virus from getting to where it likes to live. 

The problem is, getting the people you live with to be conscientious about doing these things too might be hard.  And the alternative, spraying down every surface of your home with disinfectant on a daily basis, might not be practical, affordable or good for you.

What would be most helpful is if people who were sick, especially those running a fever, would stay home and rest for a few days. 

Tip #4: Antiviral drugs may help

When taken during the first 48 hours after you get the flu, antiviral medications can lessen symptoms and speed your recovery.  But you also need to know what the flu symptoms are and be able to see your doctor right away to get a prescription. 

In the past, I have talked to my doctor at the start of flu season and gotten a prescription ahead of time, "just in case."   Somehow I forgot to have this discussion with my doctor this year.  Guess it's time to create a recurring task in my calendar so I don't forget next year! 

Tip #5: Get your Vitamin D in the normal range

I know that taking supplements to get my Vitamin D level back into the normal range had made a HUGE impact on my immune system.   Not only have I avoided more colds and flus, when I do get sick, my symptoms are much less severe. 

A rheumatologist first tested my Vitamin D level back in 2005 and discovered it was low, but I didn't begin to treat it in earnest until a few years later when the test was repeated.  I am sure that rheumatologist tested me because there is a link between low Vitamin D levels and pain.  You can read more about Vitamin D supplements reduce pain in fibromyalgia sufferers at Science Daily.

I wish I could tell you that taking Vitamin D has helped my fibromyalgia pain.  It has not.  But I am pleased that I don't get sick as often and as badly as I did before. 

Based on my experience, I'd suggest you ask your doctor to check your Vitamin D level too.

I hope you have found these tips helpful.  To learn more about what you can do about the flu, check out CDC Says “Take 3” Actions To Fight The Flu .

DISCLAIMER:  This post is intended to convey general health information and is not a substitute for professional medical advice. Please consult your health care provider to make sure these tips are right for you.

Getting to Know Me, All Over Again, After Hepatitis C Treatment

While distractions might have gotten me through 2013, they also pleasantly postponed me from diving into the new personal health management work I need to tackle.

You see, I reached a new low point with my health last year.  Hepatitis C treatment in 2012 really took a toll, in expected and unexpected ways.  It's been over 16 months since it ended and I finally feel like I have a handle all the challenges treatment presented. 

The anemia-induced exacerbation of my dysautonomia symptoms resolved and my extreme sensitivity to the sun disappeared in about 3 months.  The extreme fatigue and overall weakness got gradually better with each month that passed too.  Within a year's time, I was pretty much back to my "usual" level of chronic illness related fatigue.  Oh, and a sore that developed during treatment finally fully healed at the 15 month post-treatment mark. 

Now I just need to conquer the small intestinal bacterial overgrowth (SIBO) in my gut to get back to my pre-treatment self.  Oh, and get a handle on new problem: high cholesterol.  That was a surprise.  Seems the only good thing about having chronic Hep C infection is that the virus keeps your cholesterol low because it uses the fats in your body during its viral replication process.

As for my diabetes, there's been no dramatic improvement in my insulin resistance or glucose control since beating the virus.  And in regards to my fibromyalgia and chronic pain, there's been no improvement there either.  I am disappointed on both accounts.  However, I did some more research when I didn't get the outcomes I wanted and I remain convinced that my 24 year long chronic Hep C infection played a role in the appearance of these two conditions.

I read an article by Dr. Mark Borigini, a rheumatologist at the National Institutes of Health, and learned that Hep C can flip a (metaphorical) switch and trigger fibromyalgia symptoms.  However, it appears that when the virus leaves, it doesn't turn the switch off on its way out the door.

The same is true for type 2 diabetes.  Science Daily reported back in 2010 that Hep C flips yet another (metaphorical) switch and causes people with a genetic predisposition for type 2 diabetes to develop this condition decades before their family members do.  My paternal grandfather developed type 2 diabetes is his 70's; I developed it at age 33.

Darn inconsiderate Hep C virus, causing damage and not cleaning up after itself on its way out of my body!

Want some good news? A repeat viral load test in October 2013 showed I was still undetectable, which IS good for me in the long run.  According to a new study from Taiwan, having Hep C increases the changes of complications from type 2 diabetes.  Successful treatment of Hep C infection in persons with type 2 diabetes reduced the risk of kidney disease, stroke and cardiovascular disease by roughly 50%. 

So successful treatment helped me dodge some potential future health problems.  I am grateful for that.  And I am sure as time progresses, science will catch up and learn more about what Hep C really does to a person's body, and I will be grateful for avoiding those long-term consequences too. 

In the meantime, I need to get focused on the present and finish my recovery -- from both treatment and 24 years of having my body hijacked and turned into a viral replication factory.  It's been 16 months since treatment ended and the truth is this recovery process isn't over for me yet.  Much like when I completed my cancer treatment 25 years ago, I now need to learn to live in a body that isn't quite the same as it was 22 months...and that is going to take some time. 

2014 is the year I will really start getting to know what my body is like without Hepatitis C.

2013: The Year I Really, Really Needed Distractions

Welcome 2014!

I know I didn't spend much time here last year and I really missed blogging.  But I am happy to report I am ready to dive back in.

As for my absence and what dragged me away from my blog, well, let me tell you, it was probably the best thing that happened to me in 2013.

2013 - NOT A GOOD YEAR

Last year was not one of my better years.  Successful Hepatitis C treatment the previous year left me starting 2013 at a real low point physically and emotionally.  It left my body battered and struggling with a whole new set of treatment-induced medical problems.  Then, 3 months into 2013, I sunk even lower.  A car accident in March added injury to insult by starting a humongous pain flare-up and adding another new set of problems. 

Six weeks later, I was shocked and saddened by the news that my favorite Facebook game, Pet Society, would be closing in 2 months' time. 

I want to share all about these new health issues with you, but I'm afraid that is going to take a lot of time.  So for right now, I promise to write more about them in future posts.

DISTRACTION TO THE RESCUE

Time and again, I've written about how distraction is the primary way I cope with chronic pain.

Nothing helps me more than getting lost in a good book, television show or computer game, spending time tending to my container garden, playing with my pets or working on arts and crafts projects.  I have devoted time to creating lists of activities that I can participate in, regardless of how good or how poorly I feel on any particular day. One of my most important rules for living well with chronic pain is Have Fun Every Day and these pastimes, aka distractions, make it easy for me to have some fun each and every day.

Because really, if I have no choice but to live with moderately-severe to severe pain 24/7/365, I might as well figure out a way to have fun doing it, right?  Because life with chronic pain is absolutely no fun at all. And with increased medical problems and pain, I needed distractions more than ever in 2013 to help me get through all the tough stuff.

DISTRACTION IN MEDICINE

OK, so this is a little off-topic, but did you know, there is a reference at Wikipedia about this very concept?

Distraction is useful in the management of pain and anxiety. Dentists, for example may intentionally hum an annoying tune or engage in small talk just to create a diversion from the dental surgery process. Topical ointments containing capsaicin, provide a superficial burning sensation that can momentarily distract a patient's attention away from the more serious pain of arthritis or muscle strain.

LOSING A FAVORITE DISTRACTION....

With everything going on, this was NOT the time to be losing a tool out of my chronic illness toolbox!  Pet Society, a lovable little online Facebook game, provided me with hours of distraction from my chronic pain and fatigue.

As an early adopter of Facebook games, I honestly didn't think that a day would come when my games would be taken away from me.  Clearly I never stopped to consider the business side of gaming or took the time to read the Terms of Service for one of my favorite pastimes and coping strategies. 

....& GAINING A NEW ONE

I'm not even sure how I got swept up into the #savepetsociety protest movement or how I became such a prominent participant in what would unfold next.  What I do know is that my participation in this protest became a substitute for the favorite distraction I was losing. 

Now protesting wasn't as fun as playing the game, but it showed me how to use some old skills in a new way.

In my former life as a (somewhat) healthy person, I chose social work as my career.  I loved working with individuals, groups and communities, helping them figure out ways to address their needs and, in the process, create better lives for themselves.  This occupation requires a lot of interpersonal interaction, something that I no longer have the energy, concentration and stamina to do.

Interacting with people on a daily basis is what I miss the most about my career as a clinical social worker.

Fortunately, I discovered Facebook, Twitter and blogging in 2008.  Though not the same as an in-person social life, online social media became an alternative way for me to be social when I was able.

During the last 8 months of protesting, I used 1) all my old community organizing skills and 2) all the things I learned about social media to advance our campaign to give our game a second chance.  While ultimately our protest didn't achieve it's goal, our group put up a good and valiant fight and in the process got our message heard by Electronic Arts (EA), the gaming community and journalists in the business, human interest and gaming sectors.

That said, I am glad that things are winding down now.  Knowing this was a time-limiting endeavor, I think I might have pushed myself too hard, breaking my Golden Rule of Chronic Illness:

If you push, you will pay.
If you pace, you can play!

NEW YEAR, NEW GOAL

So as I move into this new year 2014, I wonder how I can translate what I was able to do and accomplish through the #savepetsociety protest into something more permanent in my life. 

To be honest, I'm not sure exactly what that would look like.  Perhaps a new role as a "armchair advocate" or some very flexible part-time work on social media campaigns?  Perhaps a place to start is to reread my copy of Women, Work, And Autoimmune Disease: Keep Working, Girlfriend! by Rosalind Joffe to get some ideas. 

While I doubt there are existing work-when-you-can employment opportunities available for us sick chicks, it doesn't stop me from daydreaming about participating in life as much as I am able.  Who knows?  Maybe I can convince someone with the time, energy and resources to help make this a reality for myself and others like me.

It is certainly a good idea, one that would help all us Chronic Babes overcome some of our handicaps and live our best lives despite chronic illness. Don't you agree?

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?

*fingers-crossed*

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

www.PleaseSavePetSociety.org
www.facebook.com/groups/2SavePetSociety
www.facebook.com/PleaseSavePetSociety
www.twitter.com/2SavePetSociety
www.YouTube.com/user/PleaseSavePetSociety
www.facebook.com/WeBoycottEA
http://instagram.com/2savepetsociety/
https://pinterest.com/2savepetsociety/
http://2savepetsociety.tumblr.com/

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

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!

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.

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?

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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.

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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.

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.

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.

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?

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.

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?