Author Archives: Annie

Back to the Grind

Picture of Large Ocean Wave Breaking Near ShoreUgh.

I just wanna throw my hands up and go “UGH” some days.

There’s the micro-level of “UGH” — little mini-waves on the shore of life. The dish disposal grinds to a halt and you have to kneel down on the hard cold floor to reset it with that weird little wrench thingie.  Or the kid committed you to 4 dozen Italian Wedding Cookies for the fall festival bake sale at school. And it’s THIS WEEKEND.

Then there’s the macro-level “UGH”: you get a notice from the landlord that he’s sold the house you’re renting and you have to move in 30 days. Or your previously static level of chronic pain suddenly decided to be not so static after all and started degenerating rapidly.

Finally, there’s something I like to call “the Universal UGH.” This is when several mini-ughs, which would have been totally handle-able on their own, or even just one at a time in succession, conspire to take place all at once. Or, well, at least within the same four-to-six day period of time.

Life’s like that, of course. Of course we know that.

But somehow when you’re coping with chronic pain, those mini-ughs — even the micro-ughs — just seem grossly magnified. Full on Monets, as Cher said.

And when it’s a Universal UGH?

FORGET ABOUT IT.

But life being what it is, the Universal UGH will show up from time to time. Yes, even for the chronically pained.

Take me, for instance. Right now, I’m dealing with a Universal UGH of fairly massive proportions. I mean, as far as these things go, it’s not on par with, say, the massive shitstorm I dealt with four years back. (Now that, my friends, was a Universal UGGGHHHH.)

But it’s bad enough. It’s got all the usual biblical stuff — y’know, survival, life, death (no lust though, damn it) — and it’s been something I’ve had to weather for several months now. I hope (oh God pleasepleasepleaseletitbeso) that it’s almost over. (Well, either that, or the light I see is, in point of fact, the oncoming train and I’ll be squashed like a bug here any day now. Either way: win/win.)

And I noticed something kinda funny this time around. This sort of escaped me in previous Universal UGH-times, though I’m not sure why. I mean, it’s only logical and entirely foreseeable, when you think about it. So here’s my DUH moment:

When you’re in life-crisis, you forget to manage your health and your pain.

I mean, I FORGOT.

I took my meds, of course, because – well, I’m really not so keen on the whole withdrawal thing.

But it was like I woke up one day recently here and said “Dude. WTF is going on here? I haven’t … ”

Here’s what I “haven’t”:

  • Hit the yoga mat in the AM for the “getting the muscles warmed up” routine
  • Hit the yoga mat in the PM for the “winding down and relaxing kinked-up muscles” routine
  • Taken my vitamins
  • Paid attention to the no-sodas, no inflammation-trigger foods rules
  • Meditated. MEDITATED.
  • Walked a mile

Now, I’ve done these things sporadically over the last several months. It’s not like the yoga mat is lost somewhere in the house, buried under a foot of dust bunnies.

But I haven’t done all of them routinely. And it’s that routine that keeps the pain managed.

So, now I’m paying the price. Walking my child to the bus stop (a mile total, most of it on a steep incline) has become a serious physical effort. I fear I have gained a little weight. (OK, more than a little.) My blood pressure is up (yes, I’m taking my medication). I feel scattered throughout the day, and — duh — I hurt more.

Why on earth do we do this to ourselves? We know better. And it’s not like we don’t have immediate and noticeable proof that this stuff works. And yet, when times get tough and we arguably oughtta be doing more of this stuff, instead it’s the first thing that goes.

WTF are we thinking?!

WTF was I thinking?!

Back to the grind, dammit. I might not be able to resolve the UGHs but I can damn sure make certain I don’t hurt any more than absolutely necessary while they’re paying a visit.

 

Move It, But Not Too Much: Pain-Free Exercise for Chronic Pain

Woman doing yoga (pigeon pose) on grass lawn by a lake

Yoga is one of the top five recommended forms of physical exercise for chronic pain patients.

We all know exercise is important to overall health, and more specifically to successful management of our chronic pain illnesses.

But too much exercise, or the wrong kind of exercise, can and often does lead to what’s called post-exertional pain: an increase in our pain levels that follows physical activity.

Fortunately, there are options for women with fibromyalgia, reflexive sympathetic dystrophy, chronic fatigue syndrome and other chronic pain illnesses.

Specifically, you might want to talk to your doctor about implementing an exercise program into your chronic pain management plan that incorporates one or more of the following five kinds of exercise, all of which have benefits for pain management.

CAUTION: As always, talk to your doctor
before starting any new exercise regimen.

Yoga: Strike a Pose

Yoga is one of the most often recommended forms of exercise for fibromyalgia and other chronic pain patients. It’s easily adapted to a home-based practice, although you can often find classes in your area taught by instructors with experience working with chronic pain patients.

Consisting of a series of poses or asanas that are held for a period of time, yoga is a form of mind-body exercise that bears special benefits for pain patients. Lowered blood pressure, increased stamina and flexibility (which reduce the chance of injury in daily activities), and a greater ease of movement are among those benefits.

There are many different kinds of yoga, though, and not all are suitable for the chronically pained. You might want to skip the hot-room Bikram yoga and the energetic Ashtanga forms, and instead try gentle or restorative yoga.

Recommendation:

Kelly McGonigal’s book (read a guest post from Kelly on Euston Arch about yoga and chronic pain here) is a must-have for all chronic pain patients interested in trying out yoga for health and pain relief.

Walk It Off

Walking is one of the easiest kinds of exercise for a chronic pain patient to begin. You need nothing more than a good pair of walking shoes and comfortable clothing to start, and there’s no special skill to learn. Plus, it’s free!

Start slowly with an easy pace and a short duration if you’re not used to walking for any length of time. You can then gradually increase your time and exertion level as you feel more comfortable and progress in your program.

Tai Chi: Ancient Chinese Secret for Better Health

Studies have shown that Tai Chi can improve fibromyalgia symptoms and offer pain relief.

This ancient form of Chinese movement should be learned first from an instructor or reputable DVD from an expert. Once you learn the movements and their sequence, though, tai chi — like yoga — can be practiced at home or outside.

As with walking, the expense is minimal. All you need are clothes that allow for free movement and the space to do the sequences.

Recommendation:

This DVD has been highly recommended by a friend who does tai chi. I haven’t tried it yet, but if you have, let me know in the comments what you think!

Pilates: Strengthen Your Core

Pilates is a form of floor-based exercise (although there are routines that also depend on the use of a complex contraption that’s found in Pilates studios) like calisthenics or yoga.

The difference is the special emphasis Pilates places on the core muscles: the girdle of musculature in your trunk and back that support proper movement and posture.

The resulting sequences demand more exertion than you’ll find with tai chi, but the results can’t be argued with: strong, supple muscles; leaner lines; and a newfound freedom in movement that help combat chronic pain symptoms.

As with yoga and tai chi, you might want to start first with an instructor or a good DVD. You’ll need clothes that permit free movement and some kind of exercise or yoga mat.

Recommendation:

This is a three-DVD set designed specifically for newcomers to Pilates. It’s not specifically for chronic pain patients, but it’s a good introduction.

Swimming: A Little Water Therapy Can Ease Your Pain

The simple act of floating in water, with its accompanying feeling of weightlessness, can itself be a form of pain relief. Little wonder, then, that chronic pain patients are often advised to start swimming for fitness and pain management.

Adopting a swimming program will require a bit more effort, as most of us don’t have a pool readily available for daily or regular use. You’ll need a swimsuit, of  course, and that fact alone can be intimidating for some folks.

But if you can find a swimming pool in your area, and aren’t put off by the attire, twenty minutes of swimming can help tone your arms, back, stomach, and legs, and do so without the damage to knees, hips, and other joints that running, walking, and other forms of weight-bearing exercise can wreak on the body.

Our Bodies Are Meant for Movement

We weren’t meant to live sedentary lives, sitting at desks or on couches. Our physical bodies were designed for movement, for action. Chronic pain can make that movement a little tricky, but it doesn’t have to stop us in our tracks.

Whatever form or forms of exercise you choose, keep in mind a few general guidelines for safety and as relatively painless an experience as possible:

  1. As always, talk to your doctor about your desire to get moving, before you begin to incorporate exercise into your treatment plan.
  2. Go slowly, and get instruction where you need it.
  3. Most importantly, pick an activity that you will enjoy and can commit to doing regularly. Aim for three times a week to start, and increase your duration and effort gradually over time.

 

Exercise: Pain Relief or Pain Trigger? The Answer Might Surprise You

Person lacing up a pair of exercise shoes

Prescription for pain relief: medication, nutrition, sleep hygiene ... and exercise?

Here’s a particularly nasty little Catch-22 for CP dolls: We’re told over and over that exercise will help us feel better, yet post-exertional pain — that is, exercise-triggered pain — is a prime cause of our bad days and fibromyalgia flares.

The truth of this quandary has been driven home in a very in-your-face kind of way to me in the last month. Four weeks ago, I began feeling bad — I mean really, really bad. Most of the day, every day, I rated my overall pain levels at a six out of ten, often increasing to seven or eight at times. (Normally, my mean pain level is three or four, topping out at six right before the next dose of tramadol is due.)

And what happened next is easily predictable by anyone living with a chronic pain illness: I stopped moving. I withdrew into myself, stayed glued to the heating pad on the couch, and whimpered through my day.

Doing so only made logical sense: when I had to move — say, when I went to the bathroom, or took a shower, or cooked dinner (on the days I was even capable of making dinner — there were a boatload of pizza boxes passing through our house last month!) — the pain levels increased. I walked around the house with a shuffling, “disabled old woman” gait, grabbing my back or hip in futile attempts to stop the searing pain.

And as for sticking to my daily routine of 20 minutes of walking and 30 minutes of gentle yoga? Forget it.

This went on for four weeks. I might feel slightly better for a few days, but then I’d go right back into debilitating pain. I joked that I’d invented a new yoga pose: the Couch Potato position.

A “DIY” Two-Day Intensive Pain Relief Program

Then, this past weekend, I decided it was time to get serious about feeling better. For two solid days, the only thing I paid attention to was my health and my pain level:

  • I ate low on the food chain: vegetables, fruits, whole grains, minimal meat.
  • I took my multivitamin every morning.
  • I drank water and caffeine-free tea, eliminating all sodas and artificial sweeteners.
  • I took hot baths, followed by a rub-in of Tiger Balm on the particularly sore spots.
  • I meditated three times a day.
  • I took my full complement of prescribed pain medication (flexeril and tramadol), as well as the maximum safe dose of acetaminophen.

It was extreme, but desperate times call for desperate measures. Yet as exhausting as that list may seem, there was one more thing I did for those two days, and it’s what I think truly tipped the scales for me:

I moved, almost constantly.

Movement vs. Exercise for Chronic Pain

I won’t dignify what I actually did by calling it “exercise” — mostly, it consisted of simple stretches from a seated or prone position, twisting from side to side in a very gentle arc while standing, and so forth. I set a goal for myself: for every five minutes of inactivity, I’d do one minute of movement.

Sitting on the couch watching cartoons with my daughter? Flex and point my feet, alternating left and right. Or reach up to the ceiling and stretch one side of my ribcage and then other.

Cooking dinner? I’d do simple calf and hamstring stretches. Or gentle shoulder circles.

And yesterday, after two days of this intensive approach, I felt good. Not just better, but actually good.

Now, I do not think that not moving caused the flare-up in the first place. As I said, I usually walk and practice yoga every day. But that gingerly-moving, couch-sitting approach, born out of self-preservation as it was, may well have made things a whole lot worse.

The Painful Results of Inactivity

Like the amateur scientist I fancy myself to be, I treated this as an experiment. I had a working hypothesis — gentle, regular, consistent movement helps to stave off flare-ups of chronic pain, while a lack of movement will increase pain levels.

So I set about testing it. To test the hypothesis, I willingly went immobile this morning. No movement. Sat on the couch and watched Law & Order: SVU for hours on end.

And right now, as I write this, at 2 PM EST, one full hour after my afternoon dose of pain medication, I do hurt a little more than I did at any point yesterday.

Is this proof? No, of course not. But it does support the experts who have been telling us all along to get up and move, if we want to feel less pain.

I’m not about to suggest exercise is the end-all, be-all of pain management. That’s ridiculous. But I am suggesting that some form of movement or exercise may be a vital part of a comprehensive pain management program.

Finding Your Movement Sweet Spot

So why am I not advising you to go join the Y or start running? Because I think the experts have only half the picture right. The other half is just as important, and it’s this: the reality of post-exertional pain flare-ups.

We all know it. Move too much — do too much — walk too much — practice yoga too long, even — and you’re going to pay for it the next few days.

What this tells me, the pseudo-scientist with the curious mind and the half-full bottle of tramadol, is this: there’s a sweet spot, and it’s the job of each CP doll to find her own.

In between the “extremes” of post-exertional pain and couch-potato-induced pain lies a middle ground that will help you feel better. The problem is that those “extremes” can be pretty darn close together on a spectrum of effort and movement. Walk ten minutes and you’re feeling great. Walk another five minutes and you’re in bed for two days.

And there’s another complication: sweet spots for the chronically pained — even those with the same exact CP illness — will, I suspect, vary wildly. That’s true for the same reason that our general experiences with chronic pain illnesses vary so much from person to person: because chronic pain illnesses implicate so very many different facets of daily life.

From nutrition to stress to genetics to medication to body chemistry to sleep hygiene … it all plays a part, and every new facet gives the illness another level of complexity.

Exercise — movement — whether and how we use our bodies — this plays a part, too. Your mission: find your sweet spot, and attain that level of movement each day you are physically able to do so.

How to Get Moving and Find Your Sweet Spot

A few tips before you get going:

  • Talk to your doctor first. Make sure you’re healthy enough to do some activity.
  • Start slowly and gently, with movements and stretches such as the ones I described above.
  • Begin with where you are — not where you want to be, or where you used to be. This one’s hard for me, personally. I used to be a dancer, and in some part of my mind, I can still go for thirty minutes at the barre and sixty on the floor. Of course, I can’t. I have to get my ego out of the equation, and stick to my “sick person” routine. Because that’s where I am now.

Let me know in the comments what you think about exercise as part of a pain relief program. Do you exercise? Can you tell what’s going to trigger a post-exertional flare when you’re doing it, or does it always surprise you when you can’t crawl out of bed the next day? Are you physically capable of exercise? Also, be sure to visit Euston Arch on Thursday, when I’ll look at some commonly suggested forms of exercise for chronic pain conditions.

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 http://www.eustonarch.org. 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 backgroundIt 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.)

Resource Helps ME/CFS & Fibromyalgia Patients Find Good Doctors

I’ve just updated the resources pages for Fibromyalgia and ME/CFS with a new entry: the Co-Cure Good Doctor Lists.

This page lists doctors suggested by other patients with fibro and ME/CFS (or chronic fatigue syndrome, as some still call it), by U.S. state and not-a-few other countries. The theory is similar to Angie’s List, the site that lists service providers with customer-written reviews — the doctor who is referred by other patients is more likely to actually be a good choice for women with these conditions.

That said, some of the doctors on the lists were self-referred — in other words, they submitted their own names with the affirmation that they were “fibro-friendly” or “ME/CFS-friendly” and had significant experience treating patients with these illnesses. All self-referred doctors have a note to that effect beside their entries.

There’s a reason I found and decided to add this resource to Euston Arch, and it’s not a pretty story. But it’s a story that needs to be shared. Share it I will — tomorrow. (It’s taken me several days to process what happened sufficiently to write about it cogently.)

‘Til then, take a look at the Co-Cure Good Doc list, and see if your primary care provider is listed — or if, perhaps, there’s a better choice for you out there in your community.

Four Simple Steps to Making Healthful Changes In Your Life

Image of apple and hamburger on scales

Choose wisely . . .

You know you need to do It.

Tons of people have told you about It’s importance in your life. How It will make you feel better. Reduce your pain. Improve your sleep. Give you more energy. Help you lay off the meds.

And yet …

You haven’t done It. Because whatever “it” is for you, doing “it” is a whole lot easier said than done.

Whether we’re talking about eating more healthfully (or eating differently, even), laying off the alcohol, quitting smoking, starting an appropriate and gentle exercise routine, or any other major lifestyle change – well, change is hard, Dolls.

But there’s a simple (note: I did not write easy) way to make It easier. Four simple steps that can help you knock that change out of the park and straight into Habitville, regardless of what “it” is.

Overview of the 4-Step Process to Breaking Bad Habits and Creating Good Ones

In a nutshell, here’s what you do:

  1. Get Clear on Your Reasons
  2. Retrain Your Thoughts
  3. Enlist Your Army of Support
  4. Focus on the Positive

Let’s take a closer look at each step, shall we?

One: Get Clear On Your Reasons

Before you set a quit date – before you clean out your ashtrays – before you go grocery shopping for veggies and fruits – before you buy one single exercise DVD – before you do anything else, you need to sit yourself down with a pen and piece of paper, and write out every single reason you’ve got for making this change.

Cautionary Note: Use pen and paper! The act of handwriting, for some reason, seems to make the process “stick” better with you, emotionally and mentally. Forget the computer for this one. You want a handwritten list you can actually carry around with you.

Be specific, too. Let’s say you need to quit smoking (you do, you know). Don’t just write down “it’s too expensive.” Write down ALL THE THINGS that you want but can’t afford because of that $5 a day habit.

Get emotional about it. These reasons must be meaningful to be effective. When I quit smoking years ago, I wrote down “I don’t want my daughter to be standing at my funeral and hear some bitch whisper ‘Well, you know, she smoked…’” If you don’t think that will grab your heart and rip into a million pieces quite effectively … well, just trust me. It worked.

Aim for quantity AND quality. Seriously, five pages isn’t too many. Just make them important to you.

Two: Retrain Your Thoughts

This one’s tougher than the previous step. It takes consistent effort to change your thoughts and make that new way of thinking habitual. At first, you’ll need to rely on a prepared script.

Actually, that’s not a bad idea – literally. Write down the new thoughts and carry them with you. You can even riff off your reasons list.

But first, an example. Let’s go back to the smoking cessation thing. Now, normally, when someone tries to quit smoking, they view the subsequent cravings with dread. “Oh, geez,” they’ll think, “not another craving. When will these stupid cravings END?!” And they’ll get upset. Which makes them stressed. Which makes them want a … you guessed it: a cigarette.

Here’s what you do instead: reframe your thinking. When a craving for the thing you’re giving up hits, physically change your position and then change your thoughts. Tell yourself something different – something positive.

What I did when I quit smoking: “Here comes a craving! Yay! I wouldn’t be having a craving if I hadn’t quit smoking. Instead, I’d be smoking. So the fact that I’m having a craving means it’s WORKING! YAY!”

Yes, you’ll feel like an idiot. No, I don’t care. It works. Do it.

Three: Enlist Your Army of Support

You need help. We all do. You’re going to face a boatload of temptation, and you need people around you to shore you up when your defenses are weakened (and they will be, because – and I hate to be the one to break it to you – you’re human).

So start with the people around you. Announce the change. Tell them straight up what you need. “Mommy’s going to be eating more healthfully. So I need for you to stop offering me your Easter candy and leftover desserts, OK? I really appreciate your thoughtfulness, but let’s find other ways to show Mommy you love her, ‘kay?”

“No, honey, I do NOT want a drink, and you need to stop offering them to me or I will divorce you immediately and run away with Javier Bardem. Got it?”

Like that.

Also, don’t forget online support groups! The QuitNet boards were my saving grace when I quit smoking. There are lots of options for just about every single change you could possibly want to make, so look for them, find one that feels good, and join. Then participate in it.

Four: Focus on the Positive

Here’s what I’d consider the most crucial step, and it’s all built on a sordid little truth about human nature:

We really hate to give up stuff we like.

If you focus on what you’re not doing – what you’re giving up – your brain will inevitably rebel. Maybe not at first, but it will happen, and it will leave you feeling about one inch tall with zero willpower.

But it’s just human nature. So, what we have to do if we want to successfully stop doing something that’s bad for us is switch it around and reframe the whole experience as a positive thing.

Not just “positive” in terms of “it’s good for me” – but “positive” as in “what’s IN IT for me?”

So, I’m not quitting smoking: I’m gaining better breathing. (Also: the ability to wear expensive scarves without worrying about burning a hole in ‘em…)

I’m not quitting overeating: I’m gaining a more rockin’ body.

I’m not giving up alcohol: I’m gaining a kick-ass brain (and liver).

OK, you get the picture.

Now, go change your life!

The Doll’s Three-Step Guide to Looking Great After a Sleepless Night

Picture of Woman Massaging Tired Eyes

Pain keeping you awake at night? It’s one of the chief complaints of the chronically pained. I can’t tell you how many nights I tossed and turned, or whimpered and stayed really, really still hoping to find some relief, only to crawl to the mirror the next morning and see the consequences of pain-triggered insomnia all over my almost-unrecognizable face.

Puffy eyes? Check. Sallow skin tone? Check. Permacrease in between the brows, dark circles under the eyes, and a general sense that I’d aged about 20 years overnight? Check, check, and, oh yes, check.

If pain is causing you a run of sleepless nights, the most important thing you can do for yourself and your health is to tackle that problem head on; for some specific strategies on how to get more sleep on a regular basis, check out our article on improving sleep hygiene.

And to get the most out of the day that follows, read on to learn the three easy steps to mask the tell-tale signs of insomnia, using cosmetics and items most every Doll already has on hand.

Step One: The Power of Cold Water

What you’ll need: glass, water, ice, and half a lemon

Start with some ice-cold water — inside and out. For a quick pick-me-up, and an added boost of Vitamin C to help shore up your immune system (which is impaired by regular lack of sleep), add the juice of half a lemon to a tall glass of cold water and sip as you get ready for the day.

Then tie back your hair and wash your face, finishing with an ice-cold rinse. Cold water will help wake up tired skin, refresh you psychologically, and reduce swelling. Pat on a moisturizer with sunscreen, and get ready for step 2!

Step Two: Brighten Those Doll Eyes

What you’ll need: brightening concealer, mascara, eyebrow brush/powder, eyeliner brush, highlighter

Now that the “canvas” is clean and prepped, move on to combat those dark circles. Not just any concealer will do here: you want a cream-based product that contains a brightening agent. The one I use is Almay Bright Eyes (affiliate link) – it’s a concealer and an eyeshadow base in one, and I love the texture – goes on smoothly over my aging (ahem!) skin.

You’ll want to dab it on gently and cover the entire undereye area, from corner to corner, then blend well. If you’re using the Almay product, also apply to the eyelid itself sparingly.

Next, pay some attention to your eyebrows. A well-arched, well-groomed brow will have the visual effect of lifting your face and negating that “slack” look that tired skin develops. Using an eyebrow brush with a powder that’s within a shade or two of your natural brow color,  apply the powder in upward, short strokes, gently emphasizing the natural arch of your brows. (Note: now is not the time to tweeze! That will only add to redness and swelling.)

Add a pale, shimmery highlighter on the brow bone only — use a light touch here, because too much can make you look clownish. Then — and here’s the top-secret secret a lot of Dolls need to know: add a little bit of that same highlighter in the inner corner of your eyes. Just a little bit will brighten the entire eye.

Add eyeliner if you like, but don’t encircle the eye completely. Instead, concentrate the liner on the outer corners of the eyes, and if you’re very skilled with the eyeliner brush, wing it up slightly at the edge.

Add mascara, concentrating on the outer lashes — again, this will create the illusion of a wide-eyed awake look.

Step Three: Add a Little Color

What you’ll need: cream-based blush, light lip gloss in natural shade

Stay away from powder blushes when you’re combating the fatigued look. Cream based blushes work much better and are more blendable. You want to apply it very lightly to the apples of the cheeks, and blend outwards extremely well. There should be no noticeable lines here — just a gentle flush of color. Pinks work well for most skin tones and convey a look of overall health, which will make you look more alert.

Eschew the lipsticks. When you look tired, a light gloss works wonders. Again, use a pink-toned shade that’s right for your coloring — nothing too bright or garish here! Look for a shade that approximates your own lip tone, and apply a light coat.

If you like, you can finish with a very light dusting of powder to set your makeup.

That’s it. Three steps, and you’re out the door, looking much more awake than you feel!

 

A Doll’s Story: Interview with Melanie Notkin of SavvyAuntie.com

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, SavvyAuntie.com’s Melanie Notkin!

Image of Melanie Notkin of SavvyAuntie.com

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 SavvyAuntie.com 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 SavvyAuntie.com 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 SavvyAuntie.com 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 Facebook.com/SavvyAuntie 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 Amazon.com to help her move the book up the rankings there. Send an email to Book@SavvyAuntie.com 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)