So, as I revealed in the last post, I was forced to move last year.

I’m sure we can all agree on this point: Moving? Sucks. Regardless of the excitement of new digs, fresh start, all that jazz – it just sucks.

But when you’re living with chronic pain, moving is its own special brand of hell. Things that the normals take for granted – like, say, packing, cleaning, walking – we basically roll the dice on. Will we be able to move that box from the truck to the house? It’s a crap shoot.

Fortunately, I had a fair bit of advance warning. True, the former landlady started out giving me two weeks notice, but ultimately, she was very fair and I ended up having two months, give or take a few days, in which to get ready for the impending trauma.

Sounds perfectly reasonable, doesn’t it?

Two months. I mean – eight whole weeks! That’s plenty of time for us to get our crap together, weed out the stuff we didn’t want to move, arrange for a new place, line up help …

Yeah.

Here’s what actually happened.

Figuring It All Out

The biggest obstacle was the first one I had to face: figuring out everything I had to do in order to accomplish the big-picture goal of relocating.

Now, see, normals just go find a place, get some boxes, start packing, call some friends, order up pizza and beer, and they’re done.

But CP Dolls have additional hurdles they have to clear. Reduced physical capacity means reduced capacity to earn, which means reduced income – in my case, severely reduced income. So, job one was finding enough money to actually accomplish the move.

First month’s rent, deposits for the house and for the utilities, the actual costs of moving – I don’t have a car (I had to sell it a year ago to make rent), so I was going to have to rent a truck – all these expenses totaled up were well beyond my means.

I was incredibly fortunate, and my friends and loved ones were incredibly generous. My brother contributed the truck rental costs. Through a few friends who worked in the social aid community in my area, I found out about a new grant-funded program at our local Section 8 agency that was designed to help folks like me with relocation costs. That program ended up helping me with the deposit and first half-month’s rent on the house.

With a little careful juggling, friends who chipped in generously, and a last-minute website job that came in, I had just enough cash to cover the utilities deposits and hiring some folks to help with the physical labor.

Barely, mind you. But I had what I needed.

So then it was on to the next dragon I had to slay …

Finding Someone Who Was Willing to Rent to Me

Spoiler Alert: This one’s got a surprise ending. Well, it was a surprise to me, anyway.

Refer back to that whole “reduced earning capacity”/“reduced income” thing.

Another unpleasant side effect of living with chronic pain is the poverty that comes with it. And the poverty itself also increases the cost of living. In other words, it costs the poor more to live in many instances.

This particular project, then, would reflect one of those increased costs.

Normals can go out, look at apartments or houses, fill out an application, and generally go on with their lives while making their decision – get that, their decision – of which of the handful of suitable options they want to live in, because of course their applications will be approved.

Why wouldn’t they be? They’ve got healthy-ish bodies and the jobs and (relatively) solid credit scores that go with them.

But when you’ve been struggling with CP for years, and the last several of those years were of the self-employed, cobbling-a-living-together-from-all-your-random-skills variety, then you’ve got a whole different cobble-stoned, obstacle-laden road ahead of you. It looks more like this:

• Call a bunch of places that advertise available space.
• Find out which will accept Section 8 (which you anticipate getting in two to four months, since you’ve been on the waiting list for two years).
• Plot out with military precision the bus routes you’ll need to take to go view the three or four units still on your list.
• Cry, because you realize even with the bus routes you’ll end up walking three miles and you just cannot do it.
• Cry more when the first landlord calls back and says that you took too long trying to arrange transportation and the unit is no longer available.
• Talk to a friend – or more accurately, listen while friend talks you down off the ledge. Dig deep. Somehow, find your resolve again.
• Start all over.
• Find one possible apartment or house, then call the cab and go see it immediately (paying $12 for the one-way trip) and on the way, mentally pep-talk yourself up into your best, most positive, friendly, reliable persona so you can convince the landlord to rent to you despite the fact you’re self-employed and lost an apartment in eviction proceedings four years ago when the world fell in on you.
• Which, by the way, is freakin’ exhausting, so after it’s over, collapse.

Rinse and repeat as needed.

But here’s where the universe surprised me big time: That first cab ride?

Ended in a signed lease.

For a beautiful 900 square foot 2-bedroom 1945-built cottage with hardwood floors.

And despite the lack of heat and the piss-poor water flow, I LOVE THIS PLACE SO MUCH.

(Although I do have to get wi-fi installed. This every-day-trek-to-the-coffee-shop is good for my body but bad for the wallet.)

So, the lesson I took from all that goes something like this: “Plan for the worst, but be open to the possibility that God might throw you a curve ball and really delight you with an unforeseen assist.”

Which left only the biggest, baddest dragon of all …

Actually Moving

“How many times have I moved in my life?”

The question occurs to me as I sit here struggling to come up with the words to describe what happened not even two months ago.

The answer, as near as my fibro-fogged brain can tell, is “24.”

Twenty-four moves.

Is that a lot? ‘Cause it seems like a lot.

I’m including in that tally a move from Chapel Hill back to my hometown when I was six years old, though I left out the move from hometown to Chapel Hill three years prior (because, hello, I was a toddler) and I probably shouldn’t even count this one at all since my contributions consisted exclusively of holding a doll and sitting well out of the way.

And it also includes all the times I moved into and out of a dorm in college – that’s eight moves right there.

That still leaves 13 moves. Yeah, that’s still a lot, isn’t it?

So, let’s go back to the “24.”

For the first 18 of them, I had help.

But the last six?

• Out of mom’s mobile home and into the 100 square foot studio apartment
• Out of that apartment and into a friend’s basement
• Out of that basement and into a friend’s spare room two states away
• Out of that room and up to another basement, in another (now ex-)friend’s house, in the city where I currently live
• Out of that God-awful basement and into two rented rooms in someone’s home
• Out of those rooms and into the rented basement (that’s three basements in three years, for those of you playing our home game)

Without help. All of ‘em. Each and every move was accomplished by yours truly.

And that leads us to this last move – out of that last rented basement and into this lovely cottage.

But here’s the difference between those six and this most recent move, and it’s a pretty damned big one: This time, in addition to clothing and books and toiletries and stuffed animals – little stuff even I can lift – this time, I was moving furniture and a whole kitchen-ful of … er, kitchen crap.

We’d lost all our furniture years before, in two separate waves. The first wave hit after the eviction, when I had to give away or abandon a lot of furniture I just couldn’t fit into that shoebox studio, and the second one crashed months later, when I couldn’t afford to keep up with the storage unit rent for the stuff I hadn’t been able to bear parting with.

But over the course of the last two years in that rented basement apartment, I’d accumulated a somewhat sparse collection: two couches, a loveseat, a table, three chairs, two beds … that’s it, and it all came from donations from other people and giveaways. It was all hard-used and definitely looked like what it was: second-hand crap. But it was my second-hand crap, damn it.

And now it was mine to move.

I called the few male friends I had made who were local, but they all were booked up solid for the Thanksgiving holiday, and couldn’t lend a hand.

Next, I called the contacts I’d made in the local social aid community – they said they’d get back to me but, since it was a holiday, they were all overworked taking care of the homeless population in town.

I even asked the cabdriver who drove me to look at the cottage that first day. He was 72 but, bless him, he said he’d be happy to help – but I’d have to find someone else to help him, and I’d have to do the move on the Tuesday before turkey day, which was two days before I could get in to the new digs.

Then, I got creative. I called the local homeless shelter on Thanksgiving Day and spoke to a very nice worker there named Matt.

And that’s how I ended up the morning after Thanksgiving, driving a seventeen-foot Ryder panel truck carefully through my city’s sketchier downtown area, a block from the homeless shelter, looking for a group of homeless men who would be standing near a dumpster, Matt had said.

They saw me before I saw them, and they all ran towards the truck, shouting enthusiastically, some in broken English, and smiling at me.

This was a new experience. I wasn’t sure how I was supposed to proceed. Interview them? Ask for references? Draw straws? Fight club? A motherfucking walk-off?

I rolled down the window and held up two fingers.

“I just need two guys,” I said.

The first two guys that reached the truck hopped in and introduced themselves as Jorge and Luis.

Jorge spoke very good English – Luis understood me, but had trouble forming sentences of his own, so we slipped into an easy relay pattern where they’d converse in Spanish, then Jorge would relay a question to me, I’d answer, and Jorge would translate for Luis.

They had experience in moving; I could tell by the way they took a quick visual inventory and then started loading the heavy stuff – my second-hand mattresses (I know, ick) and the couches – into the truck first, and the efficient way they carried all the smaller stuff out and arranged it carefully.

And they were careful with my second-hand crap. Like they were all priceless antiques.

It took them three hours to empty the basement and unload it all into the cottage. It cost me $30 for each of those hours, plus an additional $10 tip to each of them at the end.

Parting with that $110 was the best fucking feeling I’d had in months.

The Aftermath

The day still took a crapload out of me, despite Jorge and Luis doing all the heavy lifting.

There were floors to be swept, trash to be picked up, bagged, and emptied, and last-minute packing of all the stuff we’d forgotten. In the new place, there were beds to be made, clothes to be unpacked, food to be arranged …

By the end of the day, I was hurting like I hadn’t hurt in a long, long time. Every muscle screamed, and my left leg was so nearly numb and useless that all I could manage were short, cane-assisted hobbles to the fridge and the bed.

And I continued to pay those dues the next day, too. All that Saturday, the pain throbbed in my neck and shoulders, and spread down to my calves and ankles. My back was one twisted, spasming knot of angry muscles.

But then something odd happened. The next day – Sunday – I felt better.

That’s two days after the massive, unusually strenuous exertion.

See, before the move, I expected to be bed-ridden for four days or more.

But there I was, Sunday morning. I was still hobbling and gingerly favoring a very sore back and leg, but I was up. And cooking breakfast. And unpacking.

I was functional.

Two. Days. Later.

I’m not sure mere words can describe how overwhelming that sudden infusion of hope felt to me.

For the first time in – well, years, I guess – I felt something other than resigned acceptance or bull-headed “I’m gonna have a good life despite the chronic pain” optimism in regards to my chronic pain experience.

It was the first time I felt it might be possible for me to heal.

YES.

Trauma Dolls is back in business. (So to speak. Y’all know this site has always been a labor of love for me, my big dreams for it notwithstanding.)

What Happened Back There?!

As you may have guessed, given the wide gap in dates between this post and the previous one, I … er …. took a little break.

OK, a half-year-plus break.

The reason why is a convoluted one, but it basically boils down to this: I was consumed by one thought – 

I have no idea anymore how to write about pain in a way that won’t bore me silly.

God’s honest truth, y’all. That’s what I kept thinking, over and over:

I am boring myself to tears. 

And I convinced myself this was the problem. (Spoiler alert! It wasn’t the problem at all. Read on.)

Let’s face it: talking/writing about pain is just flippin’ hard. I think this is true for many reasons.

First and foremost, there’s the fact that chronic bodily pain is, at some level, totally subjective. Each of us experiences our chronic pain in different ways. There’s no way for us to know with any certainty that we’re talking about the “same thing” when we talk about our pain.

And those numerical scales we’re supposed to use to describe our pain to medical professionals? In my opinion, they’re just marginally better than useless. Your “five out of ten” might be my “eight out of ten” and someone else’s “three.”

There’s also the fact that we’re just hard-wired not to want to talk about it at any length. Our own pain, or anyone else’s. We get burned out on feeling it, and on talking about feeling it. And on listening to someone else talk about it.

Or – in this case – writing and reading about it.

For the last six-plus months, I just could not dredge up one single angle for any pain-related topic that didn’t strike me as trite, tired, already-done-to-death, or just plain boring as hell.

So, I followed my mom’s advice: I had nothing useful and/or helpful to say, so I kept my trap shut.

Or the blog unpublished, as you will.

But Wait! There’s MORE …

That existential writer’s crisis is not the sole reason I didn’t write for such a long time.

Other crap happened. Big crap. In point of fact, a huge, steaming, stinking pile of crap.

Namely, I had to move.

In late September, my then-landlord – a sweet and kind young woman with a habit of making every sentence sound like a question, whom I’d come to consider on par with a younger sister – dropped this bombshell on me:

Sooooo … I’m going to have to ask you to move? Because I’m going to sell the house? The downstairs needs to be redone, y’know? So, fifteen days?

Yeah, that actually happened.

It ended up being two months, not fifteen days (crikey, y’all! I mean, can you imagine? Could YOU move in two weeks?!), during which I was all panic and anger and fear.

Digression: Oddly, this turned out to be one of the best things that could possibly have happened. It ended up with my daughter and I safely ensconced into a home of our own – a charming little post-World-War-2 cottage that we share with nobody, which is the first time that’s been true since ’09.

NOTE: I’m going to be writing in more detail about this move in the next post, because this whole experience has, in a way, reshaped my relationship to my body and my chronic pain. 

So, all that happened. And I let it keep me away from writing a new post or working on the site at all.

The Twist At the End of the Story

Now, all this seems rational, right? If not entirely reasonable. At least, you can see how this belief that I couldn’t write because I was suddenly, mysteriously struck with the Boring Writing virus coupled with the physical trauma and extreme stress of moving conspired together to keep me off the blog for several months.

Here’s the catch though: all that was basically bullshit, I’ve decided.

It finally occurred to me that I was deluding myself into thinking that my opinion mattered at all. Because, at the end of the day, this isn’t for me. It’s for you, the readers. The only opinion that matters here is yours. If you’re getting something valuable from my boring writing about chronic pain, whether it’s a helpful tip, the knowledge that you’re not alone, or just a good hearty laugh from time to time, then we’re all good and I should keep my big fat ego the hell out of it.

And then, too, there’s this: a lot of what I perceived as “boredom” was just dressed-up resistance.

I didn’t want to be that person coping thriving with chronic pain.

I didn’t want to feel that pain, to be sure. But that’s true of most of us (except the masochistic among us).

But this was more than that. It was more a feeling of not wanting to carry that label – of dealing with its consequences – of being That Person, the one with chronic pain.

I was tired of carrying it around and having it define me.

So, making up this “it’s booooooring” excuse was just that – an excuse, to get me out of the responsibility of writing about it.

Now, here’s the part where I tell you all about how I came to grips with my chronic pain – AGAIN – and learned to treasure its gifts, how it’s the Best Thing Ever to happen to me, how I’ve learned sooooo much from its many blessings, yadda yadda, etc.

Pardon me, but – PUKE.

Also: I could make some shit up here along those lines, truthfully (and it would probably pass muster with at least half of you – I’m a gifted liar, at least in writing).

But it would just be nonsense. And false.

And more than anything, I believe, this kind of writing – the kind of writing I want to do, and excel at – requires honesty. Even when it’s the pain-in-the-ass variety.

So here’s the unvarnished truth:

I still fucking hate my chronic pain.

I’d give just about anything to have my old body back.

Blessings? BAH. You can have ‘em, as long as I get my high-kicking, fully functional legs back.

That’s not to say I always feel this way. Sometimes, I do feel some personal growth that’s taken place over the last 13 years because of this mad dance with pain. Every now and again, I might even feel grateful for the experience, in light of what it’s taught me about myself.

But most days?

Nah, I’d kick chronic pain’s ass to the curb so hard – harder than a perpetually drunk boyfriend who called me by his ex’s name in bed.

So there you have it. My continued inability to accept the fact of my chronically pained existence kept me off this blog for months.

What can I say? I’m working on it.

And that may be the answer, I’ve decided.

I’ll work on it … in these posts.

‘Cause the way I figure it, if it’s happening to me, chances are pretty good at least a few of you out there feel the same way.

So, let’s work on it together.

This? This post right here? Will be one of the most important pieces I ever publish on this site.

This post might even save your life.

No hyperbole there, Dolls. Martine Ehrenclou has that much to teach us about taking charge of our own medical care. And for us chronically pained peeps, being a Take-Charge Patient is not optional. It’s mandatory.

Full Disclosure: Martine’s one of my clients at Stage Presence Marketing. One of the things I’m helping her with is the blog tour for the launch of her new book, The Take-Charge Patient. But even if she wasn’t a client, I’d still hop over barrels to get her on this blog, because her message is that important for the readers of this site.

Today is the day Martine’s newest book, The Take-Charge Patient, is released. I’m thrilled that she agreed to an email interview with TraumaDolls as one of the first stops on her blog tour. You can find out more about Martine here, and more about the book on the book’s site here. Be sure to head over to the Facebook page for The Take-Charge Patient, and also follow Martine on Twitter, ’cause she regularly shares helpful links and news on issues related to patient care and advocacy.

Also, on Friday, May 18th, I’ll be posting the Trauma Dolls’ review of The Take-Charge Patient, so be sure to come back then! Grab your own copy here at Amazon. (Not an affiliate link.)

Here we go!

The Martine Ehrenclou/Take-Charge Patient Interview

What’s the main message of The Take-Charge Patient, and why is it so crucial that we hear it these days?

The main message of The Take-Charge Patient is that as patients we must advocate for ourselves.

We can’t change our health care system, but we can change how we approach it. If we approach our physicians and other medical professionals as if we are approaching a business meeting, we come prepared to medical appointments. We enter the office empowered and more confident.

If you bring your car to the mechanic, you are equipped with information on what is wrong with your car, right? Approach meetings with physicians in the same way. Know something about your symptoms, about your medical condition, gather copies of your medical records (always keep a copy of them for yourself) and prepare for a meeting with your doctor. You make the most of the interaction that way, and you present yourself as a credible patient.

Doctors no longer have the time to spend with patients that they would like to. If they take health insurance, we get about 7-15 minutes with them. Doctors aren’t going to change. We do. Because we need to make the most of our medical care and take some responsibility for ourselves as patients. Passivity just doesn’t work anymore. Traditional patients enter into relationships with medical professionals expecting them to handle everything, to know everything, to keep track of everything and prevent every kind of medical error. That may have worked many years ago, but not anymore.

Take-charge patients take charge of what they can. We are empowered, knowledgeable, organized and we ask questions when we don’t understand something (even if it’s scary).

1.5 million people are harmed by medication errors each year. Every medical professional involved in the process from prescription to fulfillment of the medicine, is multi-tasking, taking care of too many patients and has too little time and can easily make mistakes.

Unless we are our own advocates, we will be victim to a system that at times can seem determined to beat us.

What prompted you to write this book?

I wrote The Take Charge Patient because after writing my last book, Critical Conditions, which is about how to be an effective advocate for a hospitalized loved one, I knew I had to write a book about how to advocate for oneself to get the best medical care.

Six months into my interviews of over 200 physicians, nurses, pharmacists, health psychologists, other medical processionals and patients, I developed severe pelvic pain that last 16 months. I saw 11 physicians of differing specialties, and 3 alternative medical professionals in effort to find an accurate diagnosis and cure for my pain.

10 misdiagnoses later, plus 11 tests and procedures, 22 medications, I still had no accurate diagnosis and no cure for the pain.

Ironically a few months into my chronic pain condition, I realized I was living each chapter of my new book, using so many of the strategies that I had learned from the interviews and from hundreds of hours of research. I went from advocate for others to advocate for myself. This was a brutal journey but one that put my own strategies to the test. It is one thing to write a book from research and it is another to live it.

My extensive research led me to a New York Times article on hernias in women. As I read that article, my heart sped up and I knew in my gut that I had the same diagnosis as the woman described in the article. Call it a strong gut feeling or simply that the woman’s symptom profile was exactly like mine. Luckily, the surgeon mentioned in the article who cured the woman was at a teaching hospital in Los Angeles. I was on the phone within two minutes making an appointment.

Dr. Shirin Towfigh did tests and a thorough exam. She was so lovely and treated me so respectfully. She heard my story, listened carefully. She ran tests. She then did surgery and cured me. She found an inguinal hernia with a nerve passing through the hole, a muscle tear at my C-section site. I have been pain free since August of 2011. I am so grateful to Dr. Towfigh. I’m also grateful that I didn’t give up and that I was persistent as my own medical detective.

One of the main problems those of us in the chronic pain community are facing these days is the fear of being labeled as “drug-seeking.” That fear can keep us from speaking up to doctors when we really need to. What are some of your best tips for CP patients to deal with that fear and learn how to speak up and advocate for ourselves with our medical providers? 

I understand the fear of being labeled “drug seeking.” I also completely understand being afraid to speak up to doctors. We are raised to view them as gods, to not interfere, to be submissive and compliant.

Chronic pain patients can too easily be labeled as “drug seekers” or “difficult patients.” The latter, I believe, is because doctors get frustrated and lose self confidence when they cannot “cure” the patient so some blame the patient instead.

Here are a few tips:

If you organize and educate yourself as a patient this serves two purposes:

1. You empower yourself and increase your self-confidence.
2. You increase your credibility as a patient and many doctors will take you more seriously.

So what does organizing and educating yourself mean?

It means being prepared for a meeting with a doctor. Preparation involves the following:

• Create a health file complete with copies of your pertinent medical records so you can go to any medical professional without having to rely on any doctor or pharmacy to provide anything. You have your complete medical history in a packet so a doctor or other medical professional can view it all in one sitting.
• Create a chronology of events starting with the first time you experienced symptoms or pain. Describe when it first came on, what makes it worse or better, when it occurs most often (such as late afternoon or evening) and list what you have tried that either helps the pain or has no effect.
• List the physicians you have seen, their contact information and on what dates.
• List the tests and their results.
• Get copies of all tests, procedures and surgeries and their results. Include them in your health file. Keep a copy for yourself.
• Create a list of your current medications and their dosages, over-the counter medications, herbs and supplements.
• If you have a diagnosis, list it and which doctor gave it to you and on what date. Research that diagnosis only on credible websites and from credible resources. Nothing discredits a patient more than bringing in information from a fringe website and a doctor has to spend valuable time discrediting the information you’ve found. Credible websites are academic, government and professional medical society/academy organizations. They end in .gov, .org and .edu.
• When you take charge of your medical information, become knowledgeable about your condition and what you’ve been through, you not only present yourself as a credible patient but you increase your self  confidence.
• Come prepared for an office visit with a list of questions, and top three medical issues you want to discuss with your doctor. Write it down ahead of time or keep this information in your smart phone or on another kind of electronic device.

There were times during my chronic pain condition when I was intimidated by doctors. I tried to counteract that with preparing ahead of time for the appointment and I dressed professionally as if I was about to enter a business meeting. As a chronic pain patient, I wanted the physician to take me seriously. I wanted his/her respect. I wanted to be seen as a credible reporter on my body and I wanted to be viewed as a patient who was invested in my health care—someone who took charge of what I could.

Preparation is key to patient confidence. It makes it easier to ask questions.

Don’t let the doctor’s lack of time scare you off. This is your time, you are paying for it (health insurance or not) and you deserve to be treated respectfully and have your questions answered.

Many physicians I interviewed said that it is important for patients to stay on track. Try not to bring into the conversation what your sister told you to do or what your friend’s doctor did for her.

This is about increasing your credibility as a patient.

Try to talk in a cognitive manner (less emotional) and you’ll find that doctors might respond and listen more carefully. Doctors are cognitive thinkers. This isn’t to say you can’t cry, act frustrated, depressed or whatever it is you are feeling—it just means you try to think about using strategies that help you get the most out of your office visit.

Do you think the failure to advocate for ourselves as patients is quite literally killing us? In what ways?

Failure to advocate. Passive patients receive less than optimum care. If you do not interact with your medical provider, ask questions, works as a team player, educate yourself about your medical condition and your medications, you risk leaving a doctor’s office or hospital not knowing exactly what your diagnosis and treatment plan are. You put yourself at risk for being treated incorrectly, subjected to medical errors, poor communication and substandard care.

Advocating for yourself takes guts. I won’t kid you. It’s not always easy. Enlist the support of a loved one to go with you to a medical appointment. Gather whatever it is you need to oversee and monitor your own care. This is your life we are talking about. 100,000 people die every year because of medical errors.

1.5 million people are harmed by medication errors every year. This is the easiest medical error  to prevent. Participating in your medical care is simply essential now.

Sometimes it feels like dealing with chronic conditions is a full-time job. What are some ways we can manage our own care without going nuts in the process? 

I really understand how dealing with chronic conditions can feel like a full time job. At times, when I had my chronic pain condition, it felt like that to me.

Do what you can to take charge of what you can for yourself as a patient. This reduces a sense of overwhelm and helplessness. It allows you to put the whole process aside at times, which is essential for not going nuts.

Once you’ve done that, try to divert your attention elsewhere. That’s not easy to do, I know. But what helped me during my 16 months of chronic pain was to do my best to focus on my work, my husband and children. I watched movies. I tried to change my focus from my medical condition to something else that was positive.

It didn’t always work and there were many times when I simply fell back with frustration, anger and fear. I spent a lot of time crying to my husband. It was not easy. But I believe what kept me from losing my mind was my refusal to give in completely to my medical condition. I stopped talking about it to most people. When people asked, “You still have the pelvic pain? Why haven’t you found an answer?” it made me feel worse and more afraid that I would never find the answer or be out of pain. So I stopped interacting with those people about my medical condition.

I chose who I interacted with very carefully. I paid attention to how I felt with certain people. There’s nothing worse than well-meaning loved ones pummeling you with questions about your medical condition because they are anxious about it.

Get an advocate. Find a loved one who is medically savvy and ask her/him to partner with you in your journey. Can she/he go with your to a couple of medical appointments? This takes some of the burden off of you and it helps to converse with someone after a medical appointment. I enlisted a good friend who was very medically savvy as my advocate.

Find others who deal have your medical condition but look for people who are successfully dealing with it. It doesn’t mean you have to find someone who no longer has your condition, but it’s important to find people who are still managing their lives and living with the condition. This is about helping yourself. I found other pelvic pain patients who I could talk to but I was careful about interacting with people who were completely consumed with their medical condition at all times.

What’s the biggest misconception about patient advocacy, in your view? 

The biggest misconception about patient advocacy, in my opinion, is that patients or medical professionals view it as usurping the job of the medical professional. Not so. They are the experts, not us.

Patient advocacy is about implementing strategies I’ve suggested in my books to support your doctors’ efforts not to replace them. But it’s also about educating yourself so you can decide for yourself if a treatment plan is right for you or if a diagnosis sounds right according to your research or second opinions with other physicains.

Patient advocacy is about advocating for the patient but it’s also about being savvy with medical professionals and developing good communication skills so you can interact with them without stepping on their toes. You want collaboration and the way to get that is to diplomatically partner with your doctor. Many doctors are very open to this now because in the end an educated, empowered patient helps them too. But some still are not. If not, walk away. I met with two doctors who were not interested in a collaborative relationship with me as a patient. I walked away.

Thank you for your support.

I thought about this long and hard. I really, really did.

When I started the site that preceded this one (The Tramadol Diaries), my intention was to use it to build a community and ultimately write a book about coping with chronic pain. Then the whole “Google hates the ‘T’ word” thing happened, and life happened, and … well, good intentions, road to hell, all that.

See, running a website requires time and money. There’s the cost of the premium theme that controls the way the site looks. There’s the yearly registration of the domain. There’s the monthly hosting costs.

In the beginning, I’d planned to recoup the cost of running this site via affiliate links to Amazon and such.

But there were a couple of problems with that. One was that Amazon pulled its program out of North Carolina, where I now live. But the bigger issue was that I just felt icky writing those posts with affiliate links. The fact that I never made more than five to ten bucks in any year was almost beside the point, but in the end, it was just one more reason to call it quits with that approach. I’ll be removing those links from the old posts over the next few weeks.

This has always been a labor of love for me. Chronic pain has isolated me thoroughly from people I love in the past, and it puts up a wall of separation between all of us and the rest of the world. Others may mean well, but they can’t live inside our skin — they don’t know what it’s like. We do. We can, and must, support each other.

That’s why I love getting email from readers. Every time someone writes me and tells me how hopeless they felt before they found this site, how relieved they felt when they read a few reassuring posts, how this site helped them in some way … my heart just swells. That? Is payment enough.

So why am I putting up a tip jar, then?

That’s a fair question, and like I said, I wrestled with this for a long time.

What pushed me over the line and settled the issue once and for all was this: Y’all know life has been financially difficult for me for the last few years. Chronic pain took a lot away from me, including a well-paying career and a home. I’ve been slowly rebuilding over the last year, but things are still tight.

Being minimally self-employed (I set up websites and help others with marketing their businesses online but due to my condition, can’t work enough hours to make a living wage), money is always an issue. My medical care comes from a community clinic with a sliding fee scale on which I pay the lowest fees. I’ve applied for disability, I’ve applied for Section 8 assistance, and I’ve applied for food stamps.

Life’s hard for all of us, even when things are going well economically. (Which, let’s face it, they aren’t right now, whatever the headlines might say to the contrary.) And for those of us with chronic pain, it’s even harder.

So, back to the story of why I decided to put up the tip jar: My best friend and I talk every day on the phone, and it was during one of those conversations earlier this week that I caught something coming out of my mouth that took me by surprise. We were talking about the thorny issue of having spiritual faith in God when things are so damned bleak-looking. I said this:

It’s like the lottery thing. I mean, the only thing we can say with certainty that if you don’t buy a ticket, you won’t win. But if I really mean what I say, that I’m going to work on letting go of controlling things and have faith in God, then don’t I have to leave room for Him to work in my life?

That question stayed with me all that day. Was I leaving room for something better? Or was I letting my ego seize control of the “how” — how I would make the rent, how I would get the money I need to buy a car (I’ve been without one for eight months), how I would pay the hosting bill — instead of letting that be God’s business?

I don’t want to get too religious here. I completely respect others’ beliefs, or lack thereof. And it doesn’t matter. For “God,” you can substitute “the universe,” “the Flying Spaghetti Monster,” or “fate” or “luck.” There’s the stuff we do and are in control of, and there’s the stuff that happens outside of us but impacts us nonetheless. I can and should focus on the former. I absolutely should do all I can do to support myself and my child. That’s a good thing. But I should also recognize that the latter force is at work, too. And I should leave room for it to do its thing.

Then it hit me: the tip jar is “leaving room.” The tip jar is my way to recognize and honor that force, which I think of as God, and allow it to move and work to my benefit as it will. As He will.

So: I put up the tip jar.

I want to make a few things really crystal clear here:

1. There is no obligation to donate. None. Zero. I mean that absolutely.
2. I will do nothing with your email address except send you a thank-you note. Period. I freakin’ hate spam, and I would never sell those addresses to anyone. EVER. Seriously, if there were a way to make donations anonymous so that I wouldn’t even know so-and-so donated, I would. But PayPal doesn’t allow for that, to my knowledge.
3. If you are moved to donate, you can donate whatever amount is comfortable for you. There are no set amounts, and zero expectations on my part. (See #1 above.)

If you’ve found this site helpful, and if you’re in a position to do so comfortably (and ONLY if), I would be grateful for your donation in any amount to help offset the costs of running this site.

And I truly, truly hope this doesn’t offend anyone. If it does, hey – let me know. Feedback of all types (as long as it’s politely worded) is welcome.

Be warned: I’m about to make you very, very angry. Possibly enraged.

Still with me? OK, deep breath in, let it out s-l-o-w-l-y … and let’s dive in to this effed-up quagmire of outrage.

Last September, Anna Brown died in a jail cell in Missouri, alone and in agonizing pain. We know this because we have footage from the prison security cameras. We also know that for three days prior to her death, Anna complained of extreme pain in her leg and went to several different hospitals seeking treatment and relief. In each case, she was treated for an underlying ankle sprain and released by providers who said there was nothing more they could do for her. Ultimately, she ended up in St. Mary’s Hospital emergency room, where she refused to leave after once again being dismissed. So the hospital had her arrested for trespass. She was carted off to the local lock-up, where she died later that day.

An autopsy revealed a blood clot had formed in her leg — which undoubtedly caused the extreme leg pain she complained of — and had worked loose and found its way to her lungs, where it killed her.

Both the hospital and the local police department have issued statements disclaiming any responsibility for Anna’s death. The police say there was nothing they could have done — how could they know she had a serious medical problem? The hospital, believe it or not, is saying the same thing:

“Unfortunately, even with appropriate testing using sophisticated technology, blood clots can still be undetected in a small number of cases,” according to a statement released by St. Mary’s Health Center on Thursday. “The sad reality is that emergency departments across the country are often a place of last resort for many people in our society who suffer from complex social problems that become medical issues when they are not addressed. It is unfortunate that it takes a tragic event like this to call attention to a crisis in our midst.”

Anna clearly did have some “complex social problems” — the MSNBC article linked to above recounts a horrible tale of escalating tragedy that started with a tornado and ended in that jail cell last September. But let’s be clear here: Anna didn’t die because she had “complex social problems.” She died because hospital after hospital failed to take her pain complaints seriously and a lethal blood clot went undetected.

And now let’s travel to the other side of the world and meet Elizabeth Howan of New Zealand, who died from undiagnosed colon cancer after complaining of severe abdominal pain for six years. Her family is, understandably, also outraged, just as Anna Brown’s family is. Ultimately, she was told her pain was “all in her head” and was even diagnosed “probably schizophrenic.”

I’ll say it again: colon cancer. No MRI or full body scan was ever performed.

I’ll be the first to admit that we may not know all the facts on either case. But I will state this categorically and without hesitation: I absolutely believe that in both cases, their pain complaints were either ignored or significantly discounted, and I believe that happened quite possibly solely due to their gender. One of them was written off as a schizophrenic. The other was possibly dismissed as some drug-seeking homeless woman and arrested.

In Ms. Brown’s case, the hospital’s hand-washing dismissal of their own culpability is particularly infuriating. Yes, blood clots are hard to diagnose in some cases. But the critical factor here was that the hospital’s employees discounted Brown’s pain complaints; we know that’s true because they had her arrested to get her out of the ER, and had they taken her complaints seriously, that would never have happened.

Now, let’s pretend these same two events happened to men. Would the outcomes be different? I submit they very well may have been, for one simple reason: when it comes to being taken seriously by our medical care providers, the two genders are often treated wildly disparately.

If two people — one male, one female — with the same demographics (age, weight, height, social status, etc.) come into the same ER complaining of pain in the same part of the body, and each rates the pain as “6 out of 10,” the man tends to be viewed as downplaying his pain, while the woman tends to be viewed as exaggerating her pain.

I don’t know if any studies have been done on this phenomenon — I hope somebody looks at it, because I suspect it’s far more rampant than even the anecdotal evidence I hear would suggest.

So, did sexism play a role in these women’s deaths? Would a more prompt response for either have saved their lives? I don’t know – but I know at least  Ms. Howan wouldn’t have died viewed by the people who should have been helping her as a schizophrenic, and Ms. Brown wouldn’t have died moaning alone in a jail cell.

And maybe I wouldn’t be so freaking outraged right now.

I can’t say it any better than Amy Clover did at her fabulous site Strong Inside Out.  I strongly urge each and every chronically pained doll to go read “Deal With Your Life: Refuse to Play Dead.”

Bad news, parents: chronic pain in kids turns out to be more prevalent than was previously assumed Worse yet? The numbers of kids reporting chronic pain are increasing.

A recent study was published in the December 2011 journal Pain by Dr. Carl L. von Baeyer of the University of Saskatchewan’s Department of Psychology that looked at several surveys of reported chronic pain in children. (See ”Interpreting the high prevalance of pediatric chronic pain revealed in community surveys” abstract.)

Examining the results of over 40 child pain studies from 1991 to the present, the researchers found that girls experience more chronic pain conditions than boys, and as affected children grow older, the pain tends to increase.

The most common kind of pediatric chronic pain? Headaches (23 percent of kids aged 7 to 18), but abdominal, back and muscle pain were also common.

“(R)esults of this review indicate that persistent and recurrent chronic pain is overwhelmingly prevalent in children and adolescents and should be recognized as a major health concern in this population.”

When Did Your Chronic Pain Really Begin?

Officially, I was diagnosed with degenerative disk disease and worsening scoliosis in November 1999, and with fibromyalgia in February 2000. Yet, I remember quite vividly several episodes of pain in my adolescence that felt an awful lot like the fibromyalgia flare-ups I periodically experience now. The deep-seated ache, especially on the tops of my shoulders and in my lower back and hips, is pretty unmistakeable, even 30-odd years later.

At the time, of course, my mother and I were told it was “growing pains.” At 5’10″ I’d obviously done quite a bit of growing, but growing up shouldn’t hurt.

I know that now of course … but at the time? It seemed reasonable to a teenager, especially one who spent almost every day in dance class or theater rehearsals.

I didn’t really put it together at the time. It took my late mom’s revelation, four years past diagnosis, that she too had been diagnosed with fibromyalgia to trigger my memories. Thinking about a potential genetic link had my mind wandering over the history of my life with my mom, and her mother as well, looking for clues.

And that’s when the memories came: moments of such deep and bone-crushing fatigue that I could barely get to the bed, moments of intense flu-like pain that wouldn’t let me get out of bed …

Did I have fibromyalgia as a child? I’ll never know for sure. It seems more than possible in hindsight, but short of a time machine, there’s not much available to me now that can confirm it.

So when did your chronic pain really begin? And for the moms and dads out there, are you worried about your kids “inheriting” your condition? Share your experiences below!

Photo credit: Craig Dingle

Adrienne Dellwo, at About.com’s fibro and chronic fatigue site, recently wrote about her frustrations with her hair:

Choose wisely . . .

A recent article, “Obesity Linked to Worse Fibromyalgia Symptoms,” caught my attention.

The article covers the findings of Mayo Clinic researcher Dr. Terry Oh, who discovered a link between obesity and increased severity of fibromyalgia symptoms.

“We see an association between body mass index with symptom severity and quality of life in patients with fibromyalgia,” says study author Terry Oh, M.D., of Mayo Clinic’s Department of Physical Medicine & Rehabilitation. “This was the first study to look at distinct groups of obese patients and determine how weight correlates with levels of symptoms and quality of life.”

Is anyone really surprised by this?

I mean, it might not be “duh”-worthy, but I can’t ignore direct experience.

See, excess weight has plagued me almost all of my adult life. As I struggled post-diagnosis to lose weight, my fibro symptoms did, in fact, get worse and ease off as the numbers on the scale rose and fell, respectively.

And I’m not alone, I know. According to the CDC, which lumps fibromyalgia into arthritis-related conditions, over 60% of adults in the US who’ve been diagnosed with some form of arthritis (including fibromyalgia among other conditions) are overweight or obese. That’s a lot of potential fibromites who are struggling with their weight and, presumably, the increased pain that comes with excess weight.

Of course, many fibro patients cannot exercise aerobically at the level needed to aid weight loss.

Note: I said “aid” — you cannot lose weight with exercise alone. Which is the good news for fibromyalgia dolls — the thing we can’t do isn’t the biggest part of successful weight management, but the thing we can do — i.e., get our eating under control — is key.

So what are we supposed to do about it, then?

Right: eat fewer calories, with more dense nutrition per calorie.

And yes, I know that’s much easier said than done. Hell, I’ve struggled with my own eating for years … sometimes more successfully than others. Lately, I had a weight gain that’s somewhat mysterious to me. I don’t think I ate that much … but yet, the scales don’t lie. To me, that conclusively establishes that it’s far too easy to eat mindlessly, instead of mindfully.

But now I’ve got even more reason to get my own eating under control: if there’s a chance that losing weight — even a little — will ease up these symptoms and the increased pain I’ve experienced since the weight gain?

I’m there.

Who’s with me?

So I was speaking with a friend the other day. This is a friend who has recurrent acute pain, not chronic pain, just to be clear. But it’s still relevant to the discussion we started here the other day about how the war on drugs has created this adversarial relationship between doctors and patients.

She’s been trying to get a diagnosis of her pain, which recurs periodically and is pretty severe–severe enough to put her in the bed for several hours when it hits, anyway–for over a year now. After a series of tests revealed lots of little things but no smoking gun, she had to stop the process when her COBRA’d insurance coverage ran out in November. She’ll be covered again in May or June, but until then, she has to carefully manage her access to doctors because of the expense.

So, quite by accident, when she had two root canals in the space of 48 hours and was given tramadol (yep, my old friend) to manage the mouth pain, she found out that the tramadol actually worked on her recurrent acute stomach pain, too. In fact, it’s the only thing that’s ever helped. She’s deathly allergic to morphine and its pure derivatives, so a whole class of pain meds is out of bounds for her. Finding tramadol was for her, as it was for me, a life saver.

Except these pills came from a dentist.

And at the time of our conversation a few days ago, she had experienced two severe bouts of the abdominal pain in a week. And she had exactly four pills left.

She was panicked. That’s why she’d called me. She realized she wasn’t thinking clearly but here’s how she explained what she was thinking:

So, let’s say I go to the doctor. I ask for more tramadol. He says “no.” Because there’s nothing else I can take, he says “take Tylenol” — which we already know doesn’t work for me. And now I’ve got the expense of a doctor visit, no pain relief, and I’ve been labeled a drug seeker.

I get it, and I told her so. Then I suggested she go ahead and make the appointment now, while she had those four pills left, so she could show the doctor she’d carefully rationed the pills and used them only during her flareups. That she was, in fact, not a drug seeker. She agreed that made sense.

This is what it comes down to, dolls. We’re now at the point where we anticipate the suspicion and a lack of medical care.

Doctors, are you listening? We are afraid of you. More specifically, we’ve become afraid to trust you, to seek medical care, for fear that you will jump to unwarranted conclusions.

Now, true, a lot of the responsibility for this falls on us — your patients. And we’re doing what we can to educate ourselves, conquer our fears, and reach out to you.

Are you willing to meet us halfway here?