Category Archives: A Doll’s Story

Man shrugging seen through an open window

Euston Arch: The Blogger Is (For) Now In

Man shrugging seen through an open window
Wait a second…

Didn’t there used to be something else here?

Yep. You’re not imagining things. There used to be another post in this space, announcing that Euston Arch — the site registration, the files, and possibly the content and associated social media accounts — was for sale.

The (slightly) short(er) story: I have struggled my whole life with “too many projects and not enough time/bandwidth.” Over the last year, I’ve had to come to grips with the fact that I’m getting older and it’s getting harder to bring any creative project — of which I have so, so many — to completion.

I concluded something had to go. And looking at the entirety of the landscape as objectively as I could, I had to conclude the thing to go was this site. I’d been struggling for awhile with finding something worthwhile to write about here, even as the war on drugs became the war on chronic pain patients and more and more we saw evidence that an ugly tide had turned.

I knew this. I had opinions and thoughts and feelings on all of it. Yet it was like pulling teeth for me to sit still long enough to write about it, when I had all these other projects in varying states of completion begging for my attention, too.

I didn’t want the content to go away, but I knew if I just let the site sit out there on the web, I’d inevitably feel guilty for not doing anything with it.

So I decided to put the site up for sale.

And then, something happened. Something I should probably have foreseen, since it’s happened before. Somehow, sometimes, the minute I make a decision to put aside a creative project, the next thing that happens is that I get hit with crashing waves of “YOU HAVE TO WRITE THIS!” *smack, gurgle* “AND THIS!” *smack, gasp* “AND THIS!” *smack, pant, gurgle* “AND DON’T FORGET THIS!”

Enough, already.

I could just set those waves aside, metaphorically speaking. But I know myself pretty well. I’d feel guilty about ignoring those urges to write, and I’d always wonder what could have happened if I’d only listened to them, done what they were trying to compel me to do.

So, if I’m gonna feel guilty either way, I’d rather feel guilty in the way that doesn’t leave me forever wondering what could have happened IF ONLY.

I have no idea what’s going to happen. I’m making this up as I go along, as we all do. I’ll make no promises about how many posts I’ll write or how often I’ll publish. I honestly don’t know.

The only thing I’ll promise is that I’ll continue to write and publish as I feel led to do and as other, bigger commitments allow.

The first of those waves to hit is a longform piece I’m working on for Medium. That one’s going to take a few more weeks to complete, but I’ll let you know when it’s up. (My first piece on Medium. And it’s gonna be a doozy. And I’m … really, really nervous about that.)

Second wave is a blog post for this site, which I’ll get done this week, God willing and the creek don’t rise.

After that – well, we’ll see! Stick around! Could be fun! Could be a disaster! WHO KNOWS!

Photo credit: ¯\_(ツ)_/¯ via photopin (license)

On Moving, Keeping Moving, and Asking For Help

Man Pushing Cart with Belongings 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 …


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.

Profile of Person sitting by water

Happy New Year! Can It Be…? Is It Possible…?

Profile of Person sitting by water YES.

Euston Arch 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.

Be a Take-Charge Patient: Interview with Martine Ehrenclou, Author & Patient Advocate

Martine Ehrenclou 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 Euston Arch 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 Euston Arch’ 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!

Cover of The Take-Charge Patient book by Martine Ehrenclou 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.

This Doll’s Story – Part 3: Painful Lessons and a Mini-Rant

Green chalkboard with erasers on wooden stand

Even bad experiences can teach us something about our chronic pain

I’d been accused of pharmacy-shopping, apologized to and then ignored, was on the brink of withdrawal, and found out I’d lost track of 21 tramadol pills.

But somehow, probably due to the power of email, we finally got on the same page and I picked up the remainder of a one-week supply on Saturday afternoon.

Almost one week later, I found myself back in the clinic’s waiting room, anxiously eyeing the clock. It was my first appointment since the whole kerfuffle went down, and I was understandably nervous. I didn’t know how much my P.A. had been told about the various head-butting and misfires, which meant I didn’t know how to approach the whole thing. Should I start off with a complaint? Should I pretend like nothing had happened and then do a “now, about last week” thing at the end?

As it happened, I needn’t have worried. She brought it up, right off the bat, after the preliminary “how are you doing?” inquiries. Now, I should be clear here: the P.A. wasn’t confrontational or rude. She was very polite, she listened actively, she took her time … overall, I had no problem with the P.A. during this visit, except for the script she’d apparently been handed right before my appointment.

First, I brought up the issue Dr. C had raised with me: that the medication should have lasted to the end of the month. “I did the math, so to speak,” I said to her, “and it wasn’t exactly as it had been represented to me. I was actually short 21 pills, which is five days plus one pill.” I went on to explain the two possible times I remembered in which the pills could have been taken.

She listened politely, and cleared her throat when I was done. Here’s what she rattled off to me next:

  • “As a medical practice, we’re going to be treating tramadol just like Percocet.”
  • “Tramadol is already treated as a scheduled drug by 17 states. We’re just waiting for the others to fall in. It’s just a matter of time.”
  • “We’ll need you to sign a pain medication contract.”
  • “Also, since we don’t have your records from your old provider yet, we’ll need you to come in every week or two weeks to get refills for the tramadol.”

Well, the hits just keep on coming, don’t they?

I toyed with the idea of tearing down her spiel, point by point (which had been read off to her by one of the doctors, I’m guessing, during a staff meeting about that horrible patient who kept calling and emailing last week…). After all, tramadol is not anything like Percocet; it’s nonnarcotic, even though it does need to be tapered off to avoid withdrawal; and seventeen states isn’t even half, and our state isn’t one of the seventeen, so what does that have to do with the price of tea in China? And don’t even get me started on pain management contracts or why I’m being held hostage by my former doctor’s willingness to fax over hundreds of pages of medical records.

We went through a pain evaluation survey, and when I mentioned muscle spasms that I’ve been experiencing lately, she offered me Flexeril. I found that really strange. If they were so worried about me and my drug use, why suggest an additional drug? One of the riskiest of risk factors in pain medication abuse is mixing drugs like pain relievers and muscle relaxers — say, for instance, tramadol and Flexeril. Yet here she was bringing it up, after all the fuss about the quantity of tramadol I was (supposedly) taking. (Truth: I am NOT complaining. One Flexeril at night has turned out to be a godsend for me in terms of guaranteeing me a good night’s sleep.)

Overall, I left rather stunned, and unsure what to think or conclude. On the one hand, there’s “every two weeks” and a pain medication contract. On the other hand, there’s proffered Flexeril and a very mild-mannered approach.

I debated with myself for a few days about what to do. I could have complained to the layperson director of the clinic’s board, but there was that possibility the clinic would simply dump me as a patient. I finally decided the best approach was to go ahead and keep the two-week appointment, but at that exam, show the P.A. my pain log and explain the nature of the hardship they were placing on me.

Two weeks later, I marched in armed with my pain log and my medication bottles, and a printout of the costs to me, compared with my limited income, to be required to come in every two weeks. The exam portion of the appointment went just as smoothly as the prior one had, and as she was wrapping up and segueing to talking about my next appointment, I said, “Well, I wanted to talk to you about that…” and prepared to go into my rehearsed speech about how I should have earned a little trust here by now …

And she cut me off and said, “Yeah, no, you’re fine. I’ll see you in a month.” When I picked up the refill, it was for a month, with a one-month refill.

Exactly what she’d given me the first time I ever saw her.

It would kind of be funny if it wasn’t so infuriating, I think. What changed between the prior visit and this one? What justified changing the two week schedule to a monthly one? I hadn’t even gotten around to showing her that I’d been responsible with medication. She didn’t have the old records yet (I know that because they asked me to sign yet another release because they “couldn’t find” the one I’d signed the first time I saw them), and that was the rationale she’d offered for the bi-weekly requirement.

So what was different?

Or am I to conclude that this clinic simply runs on whim?

Granted, there are a number of potential explanations in between those two extremes. I am likely never to know with any certainty.

What I am certain of, however, is that even in such an infuriating situation, in which things were done to me, as opposed to things I did , there are lessons to be learned:

  • Keep a pain log. ALWAYS. That pain log helped me figure out that I had never taken more than the prescribed dose, and it could also have offered support for my position about the frequency of the refills, had we gotten that far. Over and above the potential use as evidence for the defense, the pain log is crucial to show your doctors how your medication helps you. (It’s got a ton of other uses, too. If you don’t keep one already, start one today. At that link, you’ll see five other ideas to help you be an empowered CP patient as well.)
  • Keep a running count of your medication. Had I counted the pills periodically, I would have noticed the problem a lot earlier and could have alerted my P.A. then and there, which might have countered the suspicions of her coworkers.
  • Maintain your calm. Always. I lost my temper a little bit, and I’m sure that prolonged some of the brouhaha.
  • When all else fails, try putting it in writing. I have absolutely NO doubt that the first email to Dr. A was what saved me, ultimately. Writing allows you to get out the emotional angst, then go back and edit that out so that your email or letter paints a portrait of you as a rational, even-tempered, responsible (i.e., not addicted) adult.

So, there it is — the sordid tale of my experience being unfairly accused and suspected of drug addiction or, at the very least, prescription medication abuse. I appreciate the ongoing comments of support and empathy, but I also hope you pull something of value out of this story. Something like this could happen to anyone. And the horrible part of it is that you cannot prove you are not an addict. Then again, unless you demonstrate a pattern of abuse indicators, you shouldn’t have to prove anything.

Until reality catches up with that ideal, though, I’m counting my pills and filling out my pain log, every damned day.

This Doll’s Story: Part 2 – What We Have Here Is a Failure to Communicate…

Frustrated woman on the floor next to laptop

Yep, that's pretty much how it felt...

So, after being accused of pharmacy-shopping, I was a little floored, as you can imagine.

Standing there in the Walgreens’ pharmacy waiting area, having just raised my voice considerably, I became acutely aware of people staring at me. I felt a sudden rush of shame, of all things. I’m not even sure a coherent thought or rationale attached to that emotion — just a hot rush of shame.

But what did I have to be ashamed of?

It didn’t really matter, I realized. Because to any casual observer, I was the woman screaming at a doctor’s office at a pharmacy. Clearly, I was drug-seeking and had been turned down. Right?

No, of course not. Wrong, wrong, wrong. But try explaining that to someone — anyone. The futility of defending yourself against implications of this kind was rammed home with particular force a few days later, but there and then, in the Walgreens, I decided I didn’t care what these strangers thought of me. I took my fourteen pills and went home to plot my next move.

I’d decided initially to file a formal complaint — something I’d never done in my entire life. My state’s medical licensing board’s website contained everything I needed to know to get that process started. Yet something made me pause for a moment. I wanted to know who, exactly, I was dealing with.

That’s when I found out that my provider — the one who was on vacation — was a physician’s assistant, not an M.D. That didn’t matter to me so much — P.A.s are great, in my experience. But the doctor who was covering her wasn’t just a full-fledged M.D. – she was the chief M.D. for this practice. She was the boss, in other words.

So what was going on here? Had my P.A. violated some clinic policy in giving me the prescription in the first place? Would complaining about the doctor get the P.A. in trouble? Did I care?

I actually began to consider not saying anything to anyone.

That embarrasses me now, in retrospect. Me, the health and chronic pain blogger — the woman who preaches the need for patients being their own best advocate — I was considering letting this whole mess slide without comment.

What kind of hypocrite would I be if I remained silent?

So, yeah, I had to say something. But to whom? And how?

I did a little more research on the medical licensing board site. There, I discovered something that appalled me: doctors in my state could discharge patients — refuse to treat them altogether — if the patient lodged a formal complaint!

This may not be news to anyone but me. It certainly knocked me for a loop, and suddenly I had a much bigger concern. It had taken me months to find a practice with fees I could afford. There were very few remaining options for medical care, and given my conditions — scoliosis, degenerative disk disease, fibromyalgia — all incurable, all chronic, all very painful — I couldn’t risk losing access to a doctor.

Even one that thought I was an addict? It felt at that moment like an unsolvable problem.

Then a middle ground approach occurred to me. I brought up my email program and began to write. Using the chief doctor’s email address, which I found on the practice’s website, I composed an email to her.

In that email, I laid out my medical history pertaining to my chronic pain conditions. I discussed this blog. I told her where I stand on the intrusion of law enforcement into medical care decisions. As I wrote, I was vaguely aware of how important this email was — more important than any blog post or email I’ve ever written. This email was my last hope to get the care I desperately needed.

I’ve edited out the identifying information from that email, and turned it into a PDF, so I can share it with my readers. You can get that file here (PDF link). But I wanted to share one excerpt here — after recounting the facts of what happened (which you can read in the first post, here), I wrote:

I don’t know if you can appreciate the feeling of humiliation and frustration that naturally arises when you’re placed in such a position. I felt unjustly accused and labeled, without any justification for such treatment. You have never seen me professionally, nor do we have any sort of relationship. We have never even met. Yet, simply because I called and asked for a refill for a medication that I have taken without incident for over six years, you apparently assumed that I was a drug addict.

I have never experienced this before, in over ten years of being a chronic pain patient. If I handled it badly, I apologize. Yet I maintain that I have not been treated with dignity and respect, and I have given you absolutely no reason to question the legitimacy of my treatment protocol, of which medication is an important (though certainly not the only) part.

I have maintained a website devoted to patient advocacy in the chronic pain context for several years, most recently at Even so, I confess I feel some trepidation even writing this email to you, for fear you may retaliate by dropping me as a patient from your clinic’s family practice. This sort of chilling effect is not conducive to good patient/doctor relationships or to the practice of good medicine, as I’m sure you realize. I see from the clinic’s website you are the medical director for the clinic. In such a leadership position, I am sure you would want a patient to feel free to raise a legitimate concern over his or her medical care. Yet even I, with my educational opportunities and background, and with my professional interest in patient advocacy, thought long and hard about writing this email.

I re-read that email several times, and though I was generally pleased with it, I was still very nervous about rocking the boat with this clinic. So I decided to ask for the input of two people I trust, and sleep on it myself. The next morning, having received full-throated approval from both friends and feeling somewhat stronger emotionally myself, I sent the email.

Within a few hours, I received a telephone call from the clinic’s main number. It was Dr. C, another M.D. who was apparently Dr. A’s second in command. He told me Dr. A had asked him to deal with my situation and forwarded the email to him. Right off the bat, he apologized for the miscommunication and the way I’d been treated, which earned him some goodwill from me.

The very next thing he said was, “I’ve already called in another 21 pills for you. That should be enough to get you to your appointment with Ms. B.”

Phew. “Thank you,” I said. “I do appreciate this.”

“There’s just one thing, though,” he continued, sounding hesitant. “We went back and double-checked your medical records and you should have had enough tramadol from that refill to last to the end of the month.”

It was the 21st of April.

For the second time in 24 hours, I was flabbergasted. This time, however, words failed me. I sputtered and stammered something like “I don’t think that’s right…” as I frantically searched for a calendar and my old bottle of tramadol, to match up the dates.

Pretty quickly, I realized that my addled brain wasn’t up to the simple addition and multiplication tasks inherent in figuring this out. Somehow, I managed to catch my breath, calm down, and say somewhat intelligently, “I’m not sure what happened there, but I will certainly look into it immediately and discuss it with Ms. B next week.”

He said that was fine, and he apologized one more time before hanging up.

OK, I thought, trying to calm my racing heart, this is a very different scenario. My mind raced back through the last four weeks, trying to figure out what had happened, and when. I knew I hadn’t taken more than the prescribed dosage, so when I got to the bottom of the pill bottle, I just naturally assumed it had been four weeks. But after consulting the calendar and doing the math, I had to admit that Dr. C was right: I was off by about 21 pills.

What had happened? When had it happened? This was pretty much all I thought about for the next two days. I retraced my steps mentally, going all the way back through a very busy month in which I’d moved (yet again) and coped with all the stress that brings.

Was it possible I’d taken more tramadol than I was supposed to, or been careless with the pills and dropped them, somehow? That didn’t seem plausible for a few reasons. First and foremost, I knew from the past when my old doctor raised my dose that taking more than I was used to taking produced severe waves of nausea. I hadn’t experienced anything like that. Also, we weren’t talking about one or two pills — five whole days’ worth of tramadol was missing here. Over twenty pills. That, I would have noticed if it had been accidentally dropped or spilled.

After combing back through my memory of the preceding weeks, I could pinpoint two possible scenarios: one in which I’d walked out of my motel room the day before I moved so the maid could clean it, and the other on the day I’d picked up the refill, courtesy of a ride from a fellow motel resident whom I didn’t know very well. On the way back to the motel, we’d stopped at a fast food restaurant and I’d grabbed my wallet and walked in, leaving the driver, my purse, and the pills in the car. I was gone for about ten minutes.

So I was pretty sure I knew what had happened, but it didn’t make me feel any better. If I told the doctor or Ms. B, my P.A., what I suspected, would they wonder why I didn’t file a police report? Should I report it? I couldn’t prove anything at all had happened, and wasn’t it just as likely suspicion would fall on me? I mean, if someone is of the opinion I am an addict, is anything I do going to change their minds?

What a mess.

And it got even messier, if you can believe it, the next day. I had left Walgreens with 14 pills — enough for 3.5 days. My last dose from that batch would be Saturday morning. Dr. C had called me Thursday morning and assured me he’d already called in the prescription for the remaining pills (plus seven extra, which I figured it was best not to even mention). So, I figured, if I get to Walgreens Saturday morning, I’ll be good.

Something nagged at me Friday night, though. (I only wish it had nagged at me before 5 PM…) On a hunch, I called the local Walgreens just to reassure myself the prescription was ready.

You can hear this coming, right?

They had no record of any prescription for me having been called in during the preceding 48 hours.

I hemmed and hawed a bit, but ultimately realized there was only one thing I could do: call the clinic. Again. This time, of course, it was after hours. The on-call nurse took the call and, after checking some records, told me she thought my medication was a third pharmacy which was open on Saturday. I was pretty sure that Dr. C had called it into the clinic’s pharmacy, which was not open Saturdays, but I agreed to call the third pharmacy in the morning to check, all the time thinking to myself I was going to be making yet another call to the clinic in the morning.

And, in fact, there was no pharmacy by the name the nurse had given me in my area. So, I called the clinic again. This time, a very helpful triage nurse offered to check my records and call it in herself to Walgreens. She put me on hold for several minutes, but when she came back on the line, her voice was very different — stressed, apologetic.

She’d called the P.A. on call to verify she could simply transfer the prescription, and the P.A. had read her the riot act, apparently. Here’s what I heard from the apologetic triage nurse:

Um, she said to tell you that this line is for emergencies only, and this isn’t an emergency. She said to tell you that tramadol doesn’t cause withdrawal symptoms, but that she’ll try to take a look at your file if she can sometime today and maybe call you back.

How many problems can you spot in that quote? I see three:

  1. The after-hours line to the clinic is not for emergencies. That’s what 911 is for.
  2. This was an urgent issue, requiring immediate assistance. If I did not get the medication I needed, I would go through terrible physical withdrawal symptoms. On top of my already-compromised immune system? Seriously?
  3. Tramadol most certainly does cause withdrawal when a patient stops taking it abruptly.

I was so frustrated at this point, I almost started to cry. It was unfathomable to me that a physician’s assistant could be so blase and so uninformed. And, still, the undercurrent of accusation leaped out at me from the nurse’s repetition of the P.A.’s words: you’re an addict, aren’t you?

There was nothing more I could accomplish by continuing to talk to the nurse, I realized — her hands had been effectively tied. I simply stressed once more that withdrawal was imminent for me, and the P.A. or someone really needed to do something about this.

A few hours later, I got a call back. It was pretty much what I feared: “Sorry, can’t help you. Call on Monday.”

I was totally out of medication by now, and angry about it. Had I known this was going to happen, I could at least have reduced my dose or tapered off a little to minimize the impact somewhat.

Then my eyes fell on the laptop. Email worked pretty well the last time, I thought … so back to the computer I went. I sent another email to Dr. A and cc’d Dr. C, explaining what had happened and what I’d been told by the P.A. through the nurse.

I didn’t get a response via email, but I did get another phone call around 1 PM (about the time I usually take my second dose) from yet another triage nurse. Suspicion and attitude were fairly dripping from her voice. “Mmm-hmm,” she said repeatedly, as I reiterated my request, in that way that clearly communicates “I do not believe one word coming out of your mouth, lady.”

I just stopped, mid-sentence. I took a deep breath, and I said, “You know what? It’s clear to me that you’re not interested in listening or helping, so I’ll just reiterate this: I am not asking for more pills. I am asking for what was already called in to be transferred to the correct pharmacy. That’s all. Goodbye.”

An hour later, having heard nothing in reply either via phone or email, I tried calling the pharmacy.

My prescription was ready for pickup.

Tomorrow, I’ll wrap this up and discuss the lessons I learned from this horrible, humiliating experience.




This Doll’s Story: Part 1 – Doubting Doctors and Terminal Relationships

[Note from Annie: I know I promised this post over a week ago. Honestly, I wasn’t sure how to proceed. I was leery of putting this story “out there” because of the potential repercussions. That should make a little more sense after you’ve read the following.]

assorted pills of various colors on a blue background It finally happened to me.

After twelve years of coping with chronic pain, and for the first ten and a half of those years being blessed with a wonderful doctor who was a supportive member of Team Annie, I finally came head to head with the chronically pained’s worst fear: a suspicious doctor.

Only in my case, it was more like a suspicious team of providers. And it made me feel truly, totally crappy. And angry. Very, very angry.

Here’s what happened.

I became a client of a new practice about three months back, after I relocated to my new home. The clinic is a general practice, and its fees are based on a sliding scale (necessary due to the fact I’m uninsured).

At my initial visit, the provider gave me a one-month prescription for tramadol with a single refill, which I got thirty days after the first visit, without incident.

About a month ago, I realized I was getting close to the end of the bottle on the refill. I had about twelve pills left the Sunday I realized this, so I called the next day. I was told the phone lines were damaged by the construction crew building the new clinic, and I might want to call again the next day to make sure the message went through if I hadn’t heard anything.

I hadn’t, in fact, heard anything so Tuesday morning I called again. This time, I was directed to the triage nurse, who told me she’d get the message to the doctor who covering for my provider, who was on vacation. I heard nothing the rest of the day.

Wednesday morning, they finally called me back. The nurse delivered the message that the covering doctor “refused” to refill the prescription. I would need to see my provider. And she wasn’t coming back until the following week. I made the appointment for exactly one week later and then turned to the “in the meantime” problem.

I should say that I was a little tense at this point but wasn’t truly surprised at this development, nor was I really alarmed. I simply asked the nurse to ask the doctor for a one-week supply to get me through to the appointment I’d just made.

Let me interrupt with this observation: One thing is clear. The whole “nurse as relay messenger” system? Sucks. It’s inefficient and causes major problems, as will become clearer in a few paragraphs.

I waited several hours. No phone call. Complicating things for me at this point:

  • I was about to be out of pills altogether.
  • I had no readily-available transportation. My car wasn’t driveable and it would cost over $20 to get to the clinic in a cab. (As it turns out, there was public transportation available, but I didn’t know that at this point.)
  • I could get to a drugstore across the street, and could afford the cost of the medication there. But it required the assistance of a friend who had limited availability. I was about to lose my access to that ride, as well.

So, I called back twice. I told the nurse who took the call each time, briefly, about the transportation problems, as explanation for why it was crucial we get the issue resolved promptly. It was either “get the refill now” or “go through withdrawal.” Each time, I spoke to a different nurse and so had to go through the whole spiel all over again which is an incredibly inefficient way to communicate.

Another interruption: I am sure that long-time readers know the difference between addiction and dependence. For newcomers, I’ll be brief – addiction is an abnormal psychological condition, while dependence is a totally natural physical chemical reaction to long-term use of certain pain medication. Tramadol is not a narcotic, but it acts in some ways that are similar to some opiate derivatives. One of those similarities is that long-term patients who have become dependent on it will go through physical withdrawal symptoms when they suddenly cease taking it. The proper medical approach is to wean off gradually over time.

Ultimately, the clinic called back and asked what pharmacy I wanted them to use. I took this as a sign that the prescription was going to be called in as I had requested. I mean, I’m pretty sure that’s a reasonable interpretation, right?

I gave them the name of the drugstore I could get to (the first of two times I’d tell them this). I was able to get to the drugstore, thankfully, and I waited for the prescription. As I sat down in the lobby, it had been about 20 minutes since that last call, so I assumed I’d have no more than fifteen or so more minutes to wait.

An hour later, I finally called the clinic again. I was assured the covering doctor was going to call it in “to our pharmacy.” “No, no,” I said quickly, “remember, this is to go to Walgreens.”

Right, the nurse said. Walgreens. And you’ll get fourteen pills…

“No, no, remember, I take two pills twice a day. So that’s four pills a day. A week’s supply is 28.”

Ohhhh, the nurse said. I’m going to have to talk to the doctor …

Thirty minutes after that the pharmacist still hadn’t been called. I called back again to the clinic. This is what I heard:

Yes, I did speak to the doctor about that, and she said she’s not going to call in any more than fourteen. And by the way, are you sure you’re not getting this some place else?

At first, I had this split-second reaction of “no way I just heard what I thought I heard. Surely I made a mistake.” So I asked the nurse to repeat herself.

She did.

And — well, I’m a little embarrassed to admit this but I kind of lost it. Right there in the lobby of the Walgreens pharmacy. I know my voice rose, and I remember the words “malpractice” and “medical licensing board” came out of my mouth.

And I meant ’em, every single syllable.

I paid for my fourteen pills, and I went home, furious and incredibly offended. What on earth had given these people the right to treat me like an addict? They had never even met me. They had no reason to suspect that I was misusing prescription drugs. All I’d done was call in a refill on a medication I had been taking for over seven years without incident. And based on nothing more than that, I’d been labeled a probable addict.

At least, that’s what I thought at the time…

(The rest of the story will continue in tomorrow’s post.)

A Doll’s Story: Interview with Melanie Notkin of

Every Doll Has a Story . . .

It’s my fervent belief that facts and figures don’t move people to action — stories do.

And every Trauma Doll has a story. Meet one of your sister Dolls in our new feature, “A Doll’s Story,” which we’ll post every so often. Each Story will show you yet one more reason not to lose hope over coping with chronic pain.

Today’s Story belongs to a real “aunt”-trepreneur,’s Melanie Notkin!

Image of Melanie Notkin of

Meet the Savvy Auntie Doll, Melanie Notkin

Interview with Melanie Notkin

Melanie, I cannot thank you enough for doing this. You and I have been following each other on Twitter since 2009, I think, and I’ve loved observing how you built up into such a successful lifestyle brand and website. I was astounded when you told me recently you accomplished all this while dealing with chronic pain yourself! Tell us a little bit about your history with fibromyalgia and myofascial pain.

It’s my pleasure to speak with you about my chronic pain and how I’ve refocused my life.

I don’t remember a time when I wasn’t in some sort of pain, even in mild forms. When I was little, I suffered from what they called ‘growing pains’ in my legs. When I got to the tween years, I began complaining about pain in my upper back and neck. My mother’s rheumatologist poo poo’ed it, saying I was probably carrying my backpack incorrectly… but I knew it was something more. But at age 14, what are you going to say? At 16, as growing pains subsided, the pain in my neck grew more intense, but I learned to live with it and take ibuprofen on the bad days.

When I was in my mid-twenties, the pain became unbearable at times. I went to see a sports MD thinking he might be able to help. After about 5 minutes of massage, he pressed on various place on my body which I realized had focused pain. He suggested I might have fibromyalgia and I quickly bought every book on the subject. (This was in the mid 1990s, before the Internet was a natural go-to place for research!) I had 11 of the 18 touch-points associated with fibromyalgia.

While the pain did not go away, the relief that I was part of a community helped. My rheumatologist confirmed I have the syndrom as I also have a (mild) case of rheumatoid arthritis and therefore it’s not unlikely as the two often go together.

In my mid thirties, I went to see a physiologist who said that the intense pain on my left side was myofascial pain (because I had the pain without touch). Around that time, I had complained to my former internist about my pain and described it as a migraine in my back. (He wasn’t a fibro-believer). He prescribed migraine meds which I still take on bad days. They are a gift.

How long did it take you to get a diagnosis, after the symptoms first began showing up?

Twenty years.

What’s your current treatment program like? Can you describe what you do regularly to keep chronic pain at a minimum and how you stop it from stopping you?

I take a migraine med called Fioricet (please don’t take anything without your doctor’s approval!) on intense days as soon as I feel the pain coming on. Exercise (20 minutes on a stationary bike and 20 minutes of weight training) helps too. I’ll also treat myself to a 10 minute massage at the nail salon (very common here in New York City) or on those really bad days where even Fioricit won’t help, an hour massage.

April and October seem to be my worst months, so I take ibuprofen on my ‘every day pain’ days.

Since I’ve had pain my whole life, I can’t let it stop me. Now my pain may not be as bad as that of some of your readers, or it may be worse than others. But for me, focusing on pain feels like defeat. What a downer! So I focus on success instead. In fact, I rarely talk about pain and have since thrown out all those books I bought on fibromyalgia. I just don’t like the painful energy in my home.

One of my biggest pet peeves is the way a lot of us with chronic pain — particularly those of us with chronic fatigue and fibromyalgia — are met with suspicion right out of the gate by so many in the medical profession. Have you ever experienced that? How did you deal with it?

Yes, as I said above, some of my doctors didn’t believe my pain. The first, when I was young, had diagnosed my mother with Lupus, one of the first in Canada. He was a good doctor. I think my young age is what fooled him and I don’t blame him. Besides, it was the 1970s and fibromyalgia was not a known diagnoses.

The second was an internist I had in my 20s and 30s who never believed me when I knew something was wrong, even saying once I has the stomach flu until I insisted he take blood. I was actually very ill (all better now!). So I learned early on to speak up for my body. She’s mute. I’m not.

I like to encourage myself and others to dream big, but a lot of folks with chronic pain don’t see how that’s possible. I understand that response, completely — dealing with chronic pain is often a full time job in and of itself, and it’s exhausting sometimes just trying to stay well and functional. I think sometimes the way we talk to ourselves about our pain can be one of the biggest obstacles we face. Yet I look at what you’ve accomplished and I have to conclude was a HUGE dream, and there you are, living it every day. What kind of self-talk did you have to change or develop in order to keep yourself on track with this big dream?

Pain will not defeat my dreams. And in fact, focusing on building a business I love has quieted down the pain because I have so much else to focus on.

A lot of women with chronic pain have a very hard time making ends meet financially, and one possible solution is self-employment or entrepreneurship. What advice can you give Euston Arch’ readers who are interested in exploring building their own businesses, in spite of their chronic pain?

My chronic pain is manageable. For others, it may not be. So for me, it was never an issue as I’ve had it my entire life and it’s never stopped me. That said, in 2005 I woke up numb on one side of my body and later learned it was a symptom of the onset of Multiple Sclerosis.

I was working in corporate America under a lot of stress and aggravation. Instead of launching a Website that summer, I was in the ER trying to understand why my body was numb.

While my neurologist says that stress has not proven to be the culprit of MS, I knew that one type of stress, “aggravation,” often brought on symptoms and am not surprised that during that time at my job, MS came knocking and said: Ready or not, here I am! (By the way, all of the challenges I have are likely all autoimmune issues and are probably related in some way.)

All this to say that while having one’s own business and investing one’s life’s savings in it is stressful to say that least, I don’t have aggravation. My symptoms for all challenges are lessened because I can control my aggravation levels better than when working with people that don’t offer me the solutions I believe in. Being in control of who I work with and the situations I work under to a greater degree means I can control best what creates pain or weakness – not all the time – but more so.

Bad days happen to us all. I had one yesterday — there was just no way I was getting out of the bed to finish moving out of my old house. What do you do when a bad day hits?

I don’t punish myself for slowing down. I look for ways to focus on things that bring me happiness or calm me (I call or visit my nephew and nieces!). I take something for the pain, go to the gym and/or get a massage. I take a break. I push through. I have no choice.

I hear you’ve written a book — tell us about that?

Yes! Savvy Auntie: The Ultimate Guide for Cool Aunts, Great-Aunts, Godmothers and All Women Who Love Kids (Morrow/HarperCollins) is being released on April 26th! It’s based on my Savvy Auntie lifestyle brand, the first for the nearly 50 percent of American women who are not moms but love a child in their life!

What’s next for and Melanie Notkin?

The book is a huge focus for me and the brand right now… as is continuing to build the Savvy Auntourage. There are 40,000 fans on now, growing daily! And mark your calendar! The third annual Auntie’s DayTM is July 24th, 2011!

Last question! Let’s play make believe. You meet a woman who tells you she’s just been diagnosed with a chronic pain condition. She looks depressed, sounds scared, and seems overwhelmed. What one (or two or three) pieces of advice do you share with her, from your perspective having dealt with fibromyalgia and chronic pain for so long?

Our pain is not terminal. Do not let it kill your spirit either. Keep going!

NB: This interview was supposed to be published on March 15th, and sadly that didn’t happen due to a computer hard drive crash (that would be mine — sigh). I’m going ahead & putting this up, even though the event’s over, ’cause you should still totally buy Melanie’s book and donate to Project Ladybug yourself. OK, thanks!

Melanie is asking all those considering ordering her book Savvy Auntie to please pre-order it Tuesday, March 15 on to help her move the book up the rankings there. Send an email to telling her you’ve pre-ordered the book because Melanie will donate $1 for **every book pre-ordered that day to Project Ladybug, a fund dedicated to enriching the lives of children with life threatening conditions co-founded by former Bravo Real Housewife of New Jersey, Dina Manzo.

(**Up to $1000)