Will accurately portraying life with chronic pain be a piece of Cake?

Lemon Cake Inspired By Thiebaut by DarisArt

My friends living with chronic pain and fibromyalgia are all a buzz about a new film called Cake.

According to Variety.com, the movie tells the story of Claire Simmons (played by Jennifer Aniston) who struggles with both chronic pain and a painkiller addiction.  It addresses the issues of suicide, grief and separation with a "darkly amusing" combination of humor and drama.

The story begins with the suicide of Nina, a member of the chronic pain support group that Claire attends.  After her death, Claire gets obsessed with Nina and starts an affair with Nina's husband (Sam Worthington.)  The story features Claire's support group leader (Felicity Huffman), housekeeper and physical therapist, as well as her husband.

Another article at Variety.com focuses on the fact that Jennifer Aniston doesn't wear make-up for this role.   According to the film's director Daniel Barnz, this is to show that Claire doesn't take care of herself.

A lot of my friends are sure are excited about someone with chronic pain being the main character of a movie.  The hope is that this character will somehow validate all our pain experiences to the doubters and disbelievers in our lives. I haven't seen this movie yet.  Neither have any of my chronic friends.  But we'll get our chance when the movie opens wide today in the USA (after a limited release in December 2014.) 

I do have some thoughts about all the press this movie is getting and all of the comments it has generated over on the Variety.com website.

First, I am concerned that Variety review says this movie is "...falling back on one of the hoariest and most overused of movie cliches..." and "...this manipulatively layered “Cake” probably won’t rise to the occasion..."  Ouch!

Second, while I guess being an actress and forgoing make-up for a role is some kind of Hollywood accomplishment, I think the explanation for why Claire doesn't wear make-up -- because she doesn't take care of herself -- is a little one-dimensional.  After all, I live with chronic pain and don't wear make-up, not because I don't take care of myself, but because I choose to forgo makeup and use my energy for other things I think are more important, like cooking or going to a doctor's appointment.  Which begs the question: does this movie really explain what it is like to live with chronic pain or does it just stereotype this condition?

Third, I am really concerned about how the story paints the picture of  Claire, the painkiller addicted chronic pain patient, because the fact is addiction is not common among chronic pain patients.  According to an evidence-based review of all available prior studies published in the medical journal Pain Medicine in 2008:

"...chronic opioid analgesic therapy exposure will lead to abuse/addiction in a small percentage of chronic pain patients..."  

Specifically, the risk for abuse and/or addiction was found to be on average about 3.27%.  They found that the greatest predictor of pain medication abuse or addiction was a current or past history of alcohol and/or illicit drug use, abuse or addiction.  Their recommendation? Pre-screening patients for these problems before prescribing opioid analgesic therapy.

Given all the changes that happened in 2014 with tightening access to narcotic pain medications, I'm afraid Cake is just going to be a visual aid for the public, feeding misconceptions about painkiller abuse.

Even healthcare professional have misconceptions about the proper use of narcotic pain medications to treat chronic pain.  Just this week, a prominent doctor in the field of fibromyalgia and chronic fatigue proclaimed, "You'll be pain free, because you'll be dead. Taking opioids for chronic, non-cancer pain increases your risk of death by 72%, according to a recent study in the journal Pain..."

I read a summary of that journal article and found it full of contradictory information.  For example, some researchers think that it's only the patients who obtain their narcotic pain medications from "nonmedical sources," like Claire in Cake, that overdose and wind up in the ER.  Then there is this quote (which I edited just a tiny bit for clarity):

"Safe and effective treatment of opioid-sensitive pain is possible... It requires deep pharmacological knowledge, experience, resources, considerable patience, and mental energy from a group of helpers who are able to take care of the whole bio-psycho-social conundrum of the chronic pain patient."  

That sounds exactly like what happens in my pain management doctor's office.  Hmm, too bad Claire didn't come and see my doctor.

But then again, someone treating their chronic pain appropriately with narcotic pain medications probably isn't the most interesting or provocative subject for a major motion picture, is it?  Hollywood loves misfits, even chronically ill ones.

Watch the trailer for Cake.


My most heartfelt advice for those who live with chronic pain and decide to go see Cake?  Don't get your hopes up thinking it will appropriately portray or advocate for the needs of people living with chronic pain.  Oh, and take it with a whole shaker of salt!

Until next time...

More Pain Means Less Everything Else

I've been living with more chronic pain lately and it's starting to show.

My mother-in-law called the other day and asked my hubby, "Why hasn't Selena posted on her blog lately?  Is she OK?"  She wanted to talk to me, but I was in the middle of a task, so I asked if I could call her back.

That gave me time to really ponder her question.

The truth is, I've been in a fibro flare-up for over 18 months now.  I know how it started -- being involved in a car accident last year.  Because getting into any kind of accident when you have chronic pain is probably one of THE worst things that can happen to you.

But then I realized the chain of events that has kept my flare-up going since then.  Things like:

• ongoing dental work, in the form of crowns and root canals, that is causing me more pain. It seems like every 6 months I need another dental procedure! Next up...another root canal.
• an increase in doctor's appointments, which are using up a lot of my available energy. But I feel the visits are an important part of my "get better" plan.
• participating physical therapy, which unfortunately is increasing my pain and fatigue in the short run.  I am hoping that if I stick with it, it will be helpful to me in the long run. *fingers-crossed*

And let me not forget my post-accident anxiety about being in a car.  I am really paying attention to how other people are driving now and it is downright scary sometimes. I'm working on being less hyper-vigilant, but in the meantime, a ride in the car can be quite draining.

Here are some of the other things that a severe pain flare-up can do to us:

1) Any increase in severe pain mean you have less of everything else: less energy -- physical, mental and emotional, fewer good days, a decreased ability to leave the house, run errands and go places, and a diminished capability to get things done. 

2) Any time you have an increase in severe pain, you are forced to cut back on all your activities -- physical, mental and emotional.  The longer the duration of your increased pain, the more you cut back.

3) Deconditioning can be the result of a prolonged reduction in physical activity due to an increase in severe pain. Deconditioning is defined as:

...the loss of muscle tone and endurance due to chronic disease, immobility, or loss of function.

Deconditioning becomes another challenge to overcome on your path to recovery from a severe flare-up.

4) Ongoing pain flare-ups increase the other symptoms associated with your particular chronic pain disorder.  For me, this means more fibro fog, more painsomnia (pain-related insomnia), more fatigue and more numbness and tingling in my arms and hands.

So why haven't I been blogging more lately? 

Clearly my increased pain, fatigue and fibro fog all play a significant role.

But it is also my conscious choice to spend more of the energy I do have on the things that have the potential to help me get better in the long run, like treating my dental pain, seeing my pain management doctor and doing my best to participate in a gentle and graded physical therapy program. Because I want to get back to my baseline, to be a 30 out of of 100 again.  I've been more of a 20 for the last 18+ months and frankly, I'm not happy here.  (See the scale I am referring to here. )

I want to get back to container gardening, crafting, gaming and doing more of the things I used to be able to do a regular basis.  That includes achieving my goal to consistently blog and write too.

So while most normal, healthy people might recover from a car accident in 6 to 8 weeks, the simple fact is, for someone like me living with fibromyalgia, it takes more like 60 to 80+ weeks to recover.  It's the proverbial situation of "adding insult to injury."  When you live a life with chronic pain and/or chronic illness, it just takes more time to bounce back from any added severe stress, injury or trauma.

But I will get there, I promise you and I promise myself.  It is just going to take more time, energy and patience. What keeps me motivated?  Looking forward to less pain meaning more living my life.

What's Wrong with Health Care: What It Took to Get My Painkiller Presciption Filled

Pretty please, just fill my prescription...    

Last time, I wrote about my troubles getting my prescription for morphine filled at my regular pharmacy: What's Wrong with Healthcare: Getting a Pain Pill Prescription Filled.  Today I'm back with an update.

They Just Said No

Remember how I couldn't get my morphine prescription filled at my regular pharmacy for over 3 months?  When last I wrote, I had just called another location of my old pharmacy, which was CVS by the way, and they told me they had my pain medication in stock.  I was cautiously optimistic that I was finally getting my medication.  

Well, I went there the next evening and guess what?  They DIDN'T have it!

Fed up, tired and frustrated, I took my prescription to a different chain pharmacy the next day and my prescription filling experience was completely different.

Filling a Painkiller Prescription, Redux

As I walked up to the prescription drop-off counter at this other chain pharmacy, the first thing I noticed was a sign explaining that some narcotic painkiller prescriptions could not be filled the same day because the medications would need to be ordered. 'Fair enough,' I said to myself.

I presented my prescription at the drop-off counter. The staff checked and they didn't have the medication in stock. So they 1) kept my prescription and 2) told me they would order the pain medicine for me. I was informed that the medicine should come in on Wednesday and 3) they would text me (my preference) when my prescription was ready for pick-up.

Since I hadn't used this pharmacy in quite a while, I needed to present my insurance card and my photo ID. "No problem," I told the pharmacy tech. As I waited for my information to be verified in their system, I could see the pharmacist completing the paperwork necessary to order my medication.

Wednesday afternoon rolled around. I hadn't gotten a call, so I decided to call them. I was told it was going to take one more day to get my prescription filled. Annoying, but I could wait one more day.

Sure enough, the next day, I got a text message letting me know my prescription was ready for pick up.

Bye-Bye CVS, Hello Better Customer Service

Despite the wait, this was a huge improvement over how I was being treated at CVS. Interacting with the staff at CVS left me feeling frustrated and like some kind of undeserving, second-class patient. This other pharmacy made me feel welcomed, important and worthy of their time and attention.

So I decided enough is enough, and transfered all my active prescriptions from CVS to this other chain.

On the day my new pharmacy called to get my prescriptions transfered, a pharmacist from CVS called and asked me to call them back. 'Too little, too late,' I thought and I didn't bother calling them.  I also didn't return their call when their corporate customer service department called me a few weeks later in response to the complaint I filed on their website.

The bottom line:  I'm done dealing with CVS, especially when I can get better customer service somewhere else.

The Curious Case of Painkillers "Lost" at CVS

By the way, I did some research and I think I know why CVS wasn't filling my prescription.

It seems there is a U.S. Drug Enforcement Agency (DEA) and California Board of Pharmacy probe into the "alleged loss of painkillers" at four CVS stores in Northern California. According to the L.A. Times, over 37,000 oxycodone hydrocodone combination drug pills, mostly generic Vicodin, went missing from these stores in 2013.  The article also states that earlier this year, CVS corporate told their Southern California stores to get their records in order because they were coming to audit them.

Now my prescription wasn't for oxycodone a hydrocodone combination drug (like Vicodin or Tylenol with codeine), it was for morphine. The key difference between these medications is that morphine is a Schedule II drug and therefore is locked up in a safe, whereas oxycodone hydrocodone combination drugs aren't, which makes it easier for the pharmacy staff to swipe it off the shelf if they are so inclined.

But clearly, all these problems with painkillers at CVS stores seems to have made them less inclined to fill patients' prescriptions for any kind of narcotic pain medication, which doesn't seem like good customer service or professional business practice to me.  Why should I be denied my pain medication because some CVS pharmacy staff members can't be trusted to handle these medications?

And About CVS's "Painkiller Rules"

I also decided to call my local office of the DEA, because I was told by several different people at CVS, both in the pharmacy and on the telephone with someone in their corporate customer service department, that:

1) The DEA won't allow CVS to answer telephone inquiries about whether they have certain pain medications in stock. (This also applies to CVS stores calling each other on behalf of a patient to see if another store does have the medication in stock.)
2) The DEA won't allow CVS to call me when they have my pain medicine in stock.
3) The DEA won't let CVS hold my prescription while they order the medication for me. (I was told that I needed to go into the pharmacy in-person with my prescription in hand in order to find out if they have my medication in stock.)

Well, guess what? The officer I spoke with at the DEA said that their agency doesn't have any regulations like these for pharmacies.

So what's the real truth here?

I was once told by a pharmacy staff member that the reason CVS doesn't answer telephone inquires about whether they have narcotic pain medications in stock is because they are worried about being robbed. How ironic is it then that the "robbers" they need to worry about are their own employees, not some thugs off the street?!?

I Think Patients In Pain Deserve Better Treatment

What more can I say? A person (like me!) with a prescription for a narcotic pain medication in their hand deserves the same exact customer service experience as someone with a prescription for any other medication behind the pharmacy counter. Yes, I am aware that the rules for dispensing painkillers are different. But as long as it is legal to prescribe them and legal to dispense them, patients living with pain deserve to get their prescriptions for pain medications filled without all the extra judgments, hassles and hoops to jump through courtesy of the pharmacy staff.

Leave me a comment and let me know what you think.

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.

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.

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.

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.

If I Could Wear My Pain Like Clothing #NHBPM

If I could wear my pain like clothing, this is what you'd see.

Help Stop the Global Crisis of Undertreated Pain

I just discovered a new documentary titled Life Before Death which discusses the global crisis of undertreated pain and wanted to share it with you all today. 

Please take a moment to view the trailer below.  Then head over to www.treatthepain.com to become part of a global effort to bring more pain relief to the world.  Plus you can help by liking Treat the Pain on Facebook, following them on Twitter or clicking the Do Something tab on their website.





I find this topic incredible relevant to me right now. As I have mentioned, I am looking for a new pain management doctor and I am legitimately worried about my continued access to opioid pain medications, medications that are making a real difference in the way I manage my fibromylagia pain. 

Before I started seeing my last doctor, I was never offered opioid pain medicine to manage my pain.  For 7 years I lived with severe pain on a daily basis and had to figure out ways to "grin and bear it," primarily through self management techniques.

I am grateful that opioid pain medication is now a part of my overall pain management strategy.  That said, it is only one piece of the puzzle and it certainly does not take my pain away, only reduces it.  No, I still need to keep employing all the other strategies at my disposable to manage my pain on a daily basis.  It is just a bit easier to do so when I have pain medications as part of my arsenal.

My situation is not unique.  Unfortunately, this is a hard, cold reality for many of us who are living with chronic pain:  we all are living with more pain than we should.  I would love to see that change in my lifetime.

Related articles

• Bits and Pieces: Overwhelmed with Health Care at Day 12 (ohmyachesandpains.info)
• Baffled by a Fibromyalgia Flare-up That Came Out of Nowhere? (ohmyachesandpains.info)
• In the Face of Pain: My Interveiw with Maggie Buckley (part two) (ohmyachesandpains.info)

Painful Payback from a Very Bumpy Ride

I thought I was being very practical, heading out with my hubby the Friday before Christmas to run some errands.  He was walking and I accompanied him on my mobility scooter.  We made it an event, taking the dogs with us so they could get out of the house too and join us for some fresh air and sunshine.

Seems innocent enough, right?

Except I literally ran into problems with the roads and sidewalks being filled with more potholes and hazards than I ever encountered before.  There was one decidedly panicked moment when I had no choice but drive into a rather large pothole that spanned the width of the crosswalk to get to the curb in front of me: the scooter stalled, the motor turned off and there were mere seconds left before the traffic light turned red and cars were going to start coming at me. I got out in time, but it was a jarring experience.

Again, I didn't think much of it.  I mean, heading out in my scooter means navigating all sorts of road hazards, from crazy drivers who aren't paying attention to where they are going, and don't see me, to sidewalks deformed by tree roots making them impassable.  I'm always glad when Robert is with me, acting as my extra pair of eyes to help spot the problems before I get into trouble.

Unfortunately, it was too much of a wild ride for my body to handle.

By the time I got home, I was feeling some serious low back pain and I admit it completely caught me by surprise.  Then I foolishly compounded the problem by heading out again, this time by car, to run a few last minute errands that we weren't able to complete on the earlier trip.

I was in bad shape when I finally got back home.

Ever since the 23rd, I've been experiencing a huge amount of pain in my low back and left hip.  It wasn't enough to stop me from going to my in-laws for Christmas dinner, but I needed to take my flare-up drugs, wear a compression garment and use an ice pack to do it.  Even then, the pain I felt with sitting, walking, standing, bending, etc. really distracted me from truly enjoying myself.

Bah humbug!

Now I am pretty sure this is just one of my fibromyalgia flare-ups.  But yesterday I started thinking that maybe I needed to get checked out because the pain is really lingering despite all my efforts to quell it.  Problem is, the doctors I would want to see have decided to take the week between Christmas and New Year's off, so there is no one available that might be able to help.

That leaves going to an Urgent Care or Emergency Room, which for fibromyalgia pain is never really a good idea because the doctors there have no idea how to help me.

So here I am, squirming in pain, irritable, grumpy, distracted, more sleep-deprived than usual and barely able to write this blog post.  I'm living through this flare-up and I still can't believe something as trivial as a bumpy ride on my scooter can cause so much pain.  I can't believe I am so fragile that a pothole can send me into a world of hurt.  I mean, how crazy is that?

Most of all, I am sad because this was going to be a new thing for me and my hubs to do every weekend, together, with our dogs: "walk" to run errands in our local neighborhood.  Right now, it's looking like the "mean streets" of West Los Angeles have put the kibosh on this plan, well, unless I can get an upgraded scooter with a souped up off-road suspension.

Can you imagine what that might look like?  Or how much it would cost?!?

Good grief!  I Googled and found this one for only $4.985.00!

Oh well, it's too late to ask Santa for one this year.  Perhaps he'll give me one next year...

In the meantime, I could use some healing thoughts sent my way.  (Or maybe some better pain drugs if you can spare a few.)

Question of the Week: Ever Take Out Your Frustration On Your Significant Other?

Over the weekend I read a great post by the Rheumatoid Arthritis Guy titled 10 Things I’ve Learned From Living With Chronic Illness.  It is a solid article, one that I could totally relate to in so many ways.  But I admit when I got 2/3 of the way through it I started feeling kinda bad...

Here is what triggered that reaction:

7)  No matter how bad I’m feeling, no matter how much pain I’m in, it’s *not* okay to take out my anger and frustrations on other people, especially those who are close to me.

That is excellent advice.  But I admit that I don't always follow this advice and I'm sort of ashamed to admit this.  I mostly feel bad because it is my husband that gets the brunt of my bad behavior when I go "off the rails."

I hate it when my pain and fatigue turn me into an ugly person.

Thankfully this doesn't happen that often.  Although it would happen even less if I stopped pushing myself to the limits of what I can do and paid a little closer attention to pacing myself better.  And this time of year, with the holidays coming up and the weather making my symptoms worse, is a real challenge for me when it comes to pacing.    

The long and the short of this is that I need to redouble my efforts in trying to make this an operating principle in my life.  Because if you are married or involved in a relationship, you know how easy it is to take things out on your partner.  You don't have to be sick for this to happen!

It behooves us all to remember that our partners aren't our punching bags.  We need to learn mature and respectful ways to deal with our pricklier feelings.  So the next time I want to let him have it, I think I'll work on taking a time out instead.  Then, when I am cooled off, I can decide if I need to be angry at him or not.

Since I have been a bit remiss in this regard, I need to make it a priority to start replenishing the bank of good feelings between us. Maybe I can start by baking him a batch of his favorite cookies and doing one of his chores for him.

I do this for the sake of our marriage and to maintain a good relationship with my spouse.  I also do this because I can see how I'll be increasing my withdrawals from the bank very soon.  I know that the new year is going to bring me many more periods of feeling bad when I start Hepatitis C treatment...and I am going to really need my husband's support to get through it.

So can you relate?  Do you sometimes take your anger and frustration out of the people closest to you too?  Is this something that has gotten worse since you started living with chronic illness?

I'd love to hear your stories and some of the things you do to mend fences with your significant others.  Please feel free to share your thoughts in a comment or over on the Oh My Aches and Pains! Facebook page.

Some Good Advice Deserves to Be Repeated Twice

Keep the Doctor Away by elvinstar

Yesterday I told you about my rough time last week.  In my eagerness to tell the whole story, I included a bit of advice that, in retrospect, might have gotten buried amidst all the other details.  I'm going to rectify that right now by repeating this good advice.

Words of Wisdom

Several years ago, I met with a pain specialist who came highly recommended.  While under his care, I got injured.  My rusting shower bench broke while I was sitting on it and I fell in the shower.  I just so happened to have a follow-up appointment with him the next day, and at that appointment he made a point of closely examining me to make sure that a) I hadn't hurt myself and b) those new injuries weren't being masked by my pre-existing chronic pain.

During that visit, he told me, "You have to be careful when you injure yourself, because your chronic pain can mask trauma from injuries."

For the moment, let's focus on that advice and not on the fact that that doctor eventually decided to stop seeing me because he came to believe he didn't have any treatments to offer me.

Pain Isn't All That Straightforward

The truth is that the perception of pain is not all that straightforward.  Sometimes when we get physically hurt, we don't feel anything.  Sometimes when we aren't physically hurt, we feel tremendous amounts of pain.  To read more about this phenomenon, I suggest checking out the Seven Things You Should Know About Pain Science.

My best guess is that when I hit my head last week, I did a couple of things that made my brain think my new head injury pain wasn't such a big deal:

1. I rubbed my head where I hit it in an attempt to make the pain "go away", which it did after a few minutes.
2. I resumed decorating the house, which was definitely quite a workout for me.
3. By resuming the decorating process, I distracted myself from my head injury pain.

I can't say with 100% certainty that these actions led to my brain downgrading my head injury pain, but I believe they all played a role in my brain delaying the development of a significant pain response.

Let me also say that this isn't the first time something like this has happened to me since I started living with chronic pain.

What Hurts Isn't Always Where the Problem Is

A few years back I fell stepping down out of the storage room behind our garage.  Immediately afterwards, I was in a tremendous amount of pain around my left ankle and had to have Robert help me back into the house.  I tried icing my foot and ankle to see if the pain was from a sprain.  After about an hour, when the pain had not reduced significantly, I headed to the Emergency Room (ER).

I told the doctor that my ankle hurt.  He examined it and ordered an x-ray of my ankle.  When he didn't see an ankle fracture, he was ready to release me in an ankle brace.  Thank goodness a radiologist also reviewed the x-ray film, because he is the one that found the fracture in my foot, which lead to the doctor completely changing his discharge plan.

Sometimes It Doesn't Hurt At All

My final example is my recent urinary tract infection (UTI) at the end of September.

If you have ever had a UTI, you know how painful they can be.  Only this last one I had caused me no pain whatsoever.  It came to my attention when I had a day of sky-rocketing and then plummeting blood sugar readings that left me feeling sick, nauseous, dizzy and completely wiped out.

This story also involves yet another trip to the ER, where the doctor ordered a urinalysis and then IV antibiotics to start treating the infection right away.  I was both amazed and puzzled when during the infusion my nausea and dizziness disappeared and was replaced with the characteristic urinary pain that is the hallmark of a UTI.  That left me wondering why my body hadn't alerted me to the infection until that moment.

In hindsight, my only guess is that the UTI developed while I was taking 10 days of antibiotics to treat an infection in one of my stitches from my carpal tunnel surgery.  Somehow being on antibiotics convinced my brain that this additional infection was being taken care of.

What This Means For You

So back to the good advice from that pain expert I saw (you know, the one who decided that he couldn't help me...)

You have to be careful when you live with chronic pain, because chronic pain can mask symptoms of other health problems.

Which means:

1. You'll need to remember this when you hurt yourself or something unusual happens.
2. You'll need to educate your doctors about this fact, as they probably will be aware of it themselves.
3. You'll need to learn to be a detective in order to decipher the mixed messages your body will give you from time to time.
4. You'll need to be a strong advocate for yourself when faced with medical practitioners who discount your symptoms when they can't figure out what is wrong with you.
5. You'll need to be more proactive about taking preventative measures so that you don't injure yourself or get frequent infections on top of your chronic pain.

The informational content of this article is intended

to convey general educational information

and should not be relied upon as a substitute

for professional healthcare advice.

Related articles

• Question of the Week: Getting Mixed Signals? (ohmyachesandpains.info)
• Question of the Week: Confounded by Complications? (ohmyachesandpains.info)
• Am I Trading One Pain for Another? (ohmyachesandpains.info)

Question of the Week: Getting Mixed Signals?

by asifthebes

Last week was a really rough week for me.

It began innocently enough.  I put up outdoor Halloween decorations last Sunday with copious amounts of help from Robert.

In the process, I hit my head really hard on our mailbox while getting up after plugging in a light string into a power strip on the front porch.  I spent several minutes cursing and swearing, rubbing my head and half expecting blood to start trickling down my face.

After a few minutes, the pain subsided and I got back to decorating.

The next day, I felt fine.

But then Tuesday rolled around and I started to feel horrible.  After being up for about an hour--and trying to get a bunch of things done before my second carpal tunnel surgery scheduled for the next day--I started getting really dizzy and nauseous.  The more I moved, the more nauseous and dizzy I got.  After a couple of hours of these symptoms getting worse, I started getting worried.

Then I remembered that I hit my head.

'Dang, do I have a concussion?' I thought to myself.  Then I remembered what a pain specialist told me,"You have to be careful when you injure yourself, because your chronic pain can mask trauma from injuries."

'This is just great!  And I have surgery scheduled for tomorrow.'

Of course, by now it is late afternoon, too late to get a same day appointment at my primary care doctor's office.  So I call the local Urgent Care, but after I explain my circumstances, they recommend I go to the Emergency Room in case I need a CT scan.

So I wait for Robert to get home from work to take me, because by now I am too dizzy and my stomach too upset for me to get there myself.  After what seems like an eternity, he finally gets home.  We head over to the ER.  I tell the medical professionals how I hit my head, how I don't really have any pain, just really severe nausea and dizziness.  The doctors say my neurological exam is normal, decide against the head CT scan, say my symptoms are normal for someone who has recently hit their head and send me home with a prescription for some anti-nausea medicine.

Oh, and they think there will be no problem with me having surgery tomorrow.

They diagnose me with a head injury and think surgery in 12 hours would be a good idea?!? That makes me wonder if they know what they are talking about...

So I go to the pharmacy, get the medicine, take it and it doesn't really help.  I go to bed and as I lay down and close my eyes, the room starts spinning furiously.  Between the queasiness and wooziness I can't sleep.  Fifteen minutes before the alarm is supposed to go off, I decide that I am canceling my surgery, even if the ER doctors think having surgery three days after hitting my head is a good idea.

When I talk to the nurse in the surgery center letting her know why I am canceling my surgery at the last minute, she agrees with me that postponing it is a good idea.

The nausea and dizziness lasted until Friday morning.  Then it turned into the most g-d awful pain flare-up.  The whole left side of my torso, from my neck and shoulder, down my spine to my tailbone, hurt viciously and horribly. I spent the entire weekend writhing in pain, taking pain medicine, glued to a heating pad and distracting myself.  It is only just now, on Monday morning, that I feel like the pain might be relenting just a wee bit.

So not only did I get some pretty mixed messages from the healthcare professionals I interacted with this last week, it seems my body was having some big issues accurately communicating to me what exactly was going on.

Can you relate?  Ever gotten mixed messages from your healthcare providers?  Or has your body acted strangely and left your scratching your head trying to figure out what is really wrong?   

Let me know about the mixed signals you've had to deal with by leaving a comment here or heading over to the Oh My Aches and Pains! Facebook page.

In the Face of Pain: My Interview with Maggie Buckley (part three)

Maggie:  The nature of pain care in our country right now is undergoing a big change, unfortunately, and some approaches are being restricted for good cause and some approaches are being limited for no real good reason or because of politics.

In Washington State for example, the State legislature has regulated opioid use, stating who can receive these medication, who can prescribe them, under what conditions and setting an upper limit on dosage and number of pills prescribed.  So that doesn't help any of us with chronic pain because now legislators, not doctors, are dictating what health care decisions are going to be made.

Selena: Laws like that come from a mindset that I don't understand.  I don't get why you don't adequately treat people who are in pain and you pass laws that withhold a pain treatment option that might help.

Maggie: Well, opioid pain medication is often vilified because it is morphine-based, so people think it must have something to do with illicit drugs.  So despite the actual statistics, it is the people with the personal stories about how they have lost a loved one, someone who is not living with chronic pain, to misuse or abuse of prescription pain care medication that are swaying public opinion.

The majority of people who overdose on opioids do not have their own prescriptions for these medications.  They have acquired somebody else's medication.  The suspicion then falls to the person with the prescription: Are they selling it? Did they give it to somebody?  The person who has passed away can't be questioned as to where they got the medication.  And in our culture, it is wrong to vilify the dead person; it's wrong to say that they died through actions of their own.

So grieving families tend to blame those of us who have chronic pain and have prescriptions for any "dangerous" medications.  They are not cognizant of the full picture.  That's why awareness needs to be raised. That's why we need more advocates out there explaining that there are more people in this country who have overdose deaths from acetaminophen than from prescription opioids.

It's another examples of how a little information in the wrong hands going a long way.

Selena:  I can also see how withholding opioid medications might mean that some people are using over-the-counter pain medications to excess or inappropriately because it's not really helping them manage their pain.

Maggie: Yes, so if consumers aren't educated and know what the pain treatment options are, they are going to be focused on taking a pill.  And if they are just focused on pills, and their doctor isn't giving them a prescription or not giving them enough of a prescription, then they are going to go some place else to find some other substance.  Whether it's an over-the-counter drug, street drugs, marijuana or alcohol, if someone is in pain they are going to be looking for relief.

As a person with pain, I am sure you understand and agree with me that the one thing we all want hope.  We want to know that in this moment, right now, when we have so much pain and we don't want to go on like this, what keeps us going on is that we have hope that we don't always have to be in pain.  We have hope that there is something out there that is going to help us.

Selena:  I guess I have gotten to a point where I don't hope I won't have pain, just that I will be able to manage the pain I do have.

Maggie:  That is pretty much how I think too.  For me, the pain is never going to go away. I've never known anything but pain.  I have experienced pain since childhood and I just want it to be managed enough so I can participate in life.

Selena:  Yes, exactly.
     

Related articles

• In the Face of Pain: My Interveiw with Maggie Buckley (part one) (ohmyachesandpains.info)
• In the Face of Pain: My Interveiw with Maggie Buckley (part two) (ohmyachesandpains.info)

In the Face of Pain: My Interveiw with Maggie Buckley (part two)

Selena: Let's talk a little bit about your own personal pain advocacy.

I read your biography at the American Pain Foundation website, so I know that your live with Ehlers-Danlos Syndrome (EDS).  EDS can include symptoms of  fibromyalgia, which is a condition I have as well.  I am wondering how you have been able to successfully advocate for yourself in terms of getting better pain treatment when you live with fibromyalgia.

My experience has been that fibromyalgia is a difficult condition to have when it comes to actually getting some pain relief. 

Maggie:  Yes, it is a challenge.  I think the challenges are with communication and knowing what your options are.  Part of that is examining any preconceived notions you have, like: 'This is what I am going to accept.' 'This is what the doctor is going to do for me.' and 'This is what I want.'

There is a delicate balance here: you know what you want, you know what you need and then you need to navigate the healthcare system.  Whether it's your HMO or you insurance company, maybe you need to get them to "sign off" on certain things. In a lot of states there is a "fail first" protocol where you have to do it "their way" before they will consider any specialized treatment.

The first step is becoming very clear with yourself about what is going on and outlining your objectives.  The next step is documenting your status quo.  A good place to start is documenting what your pain level is using a pain notebook.  I volunteer with the American Pain Foundation (Maggie is on their Board of Directors), so I'm going to recommend the APF's pain notebook.  It has downloadable PDF pages that will help you build a notebook, something that you can share with your healthcare provider that will show the pattern of your pain.  Then your nurse will be able to summarize it or highlight things for the doctor to look at.

Also, with pain care in general, some people are very narrowly focused on 'I need to take a pill to do this.' or 'I need to have physical therapy to do this.' or 'I need to lose weight to get rid of my pain.' There are a lot of people who, when they first get into a chronic pain situation, are very clear in their minds and have this image of  'This is what pain-free is going to be and what is it going to mean and how I am going to get there.'

Usually that is not the case.

So being open to the idea that there are six or seven different approaches to pain management, whether it is medications, injections, surgery, complimentary or alternative medicine, implantable devices and/or physical therapy.  It is most likely going to be a combination of approaches.

It is more about creating a recipe of what works for you.

So you take a little bit from this approach and a little bit from that approach and then you mix it together.  So maybe to start on the road to pain management you'll need prescription medications and physical therapy.  You'll need the prescription medications to get your pain down to a certain level so that you can actually show up and participate in physical therapy.  Maybe with an increase in physical therapy, the benefits from medications are diminished, so you add in something else like meditation, acupuncture or massage.

As you go along, you learn and get better at managing your pain.  So if you have an injury or setback you'll add something back in that worked in the past.  Patience is a big part of it, as is tracking your symptoms so you can present a full picture of what is going on with you and have documented proof.  It's also about having really good communication skills: not just being able to tell your story, but being able to listen and participate respectfully in conversations.

And finally, don't be shy about letting a healthcare provider go if they aren't giving you the support you need and working with you on your situation.  You are a consumer and it is O.K. to go find somebody else.


Selena:  That's a good point.  I know in my own personal experience it has taken going to several different doctors before finding a doctor that was really willing to look at all the pain treatment options and offer me something from everything available.  I found that there were some doctors who were only willing to go so far with pain treatment.  Once I tried everything they were willing to offer me, I had to go see someone different because there wasn't anything else they were going to offer me.

I am wondering if, through your advocacy work, this a story that you hear a lot and is this something that you are trying to change?

Maggie: Yes, with everything that I am involved with.  Using the In the Face of Pain website is helping me do this; it is one of many tools that I use.  Plus there are links on the In the Face of Pain website to medical organizations that are another tool you can use to help find pain management healthcare providers.

I think finding a healthcare provider is just like dating. First you meet, then you decide 'Well, do I want to see them again?' and 'What am I getting out of this relationship?' You might decided to break up with that doctor and start the whole "dating" part over again.  And it might take a second, or third, or fourth, or fifteenth round of "dating."  It can be very frustrating and it wears people down.

Contacting support organization for your particular condition, or similar conditions, can help. So for example, for people with EDS, I always advise them to consider tapping into support organizations for fibromyalgia, arthritis or heart-related conditions because those are all the symptoms and systems that are affected.

When you have exhausted the list at one organization, take a look at somebody else's list for ideas about who might be able to help you.  Sometimes finding good pain care means thinking outside of the box.

To be continued... 

Related articles

• In the Face of Pain: My Interveiw with Maggie Buckley (part one) (ohmyachesandpains.info)