Tag Archives: back injury

Malawi Needs Medicine Bottles

Early on in dealing with the back injury that laid me low last year, I realized there were going to be a good number of prescription medication bottles floating around my apartment. I couldn’t stand the idea of throwing them all away. Thinking of the sad state of American medical care, I thought, “There’s got to be some kind of art project in this.”

I thought my chance had come last Halloween, when my friend and I did a joint costume at a science-themed Halloween party. She was “old medicine” (Victorian dress and a bottle of “snake oil,” a.k.a. whisky) and I was “new medicine” (a fluorescent orange t-shirt with a billion empty prescription bottles hot-glued on) and the whole thing was pretty hilarious.

wpid-screenshot_2015-03-11-19-09-19.pngAfter the party, though, I still couldn’t bring myself to throw away all those little orange bottles. So I threw them in a storage container and figured, sooner or later I’d find the reason I was hanging onto them.

That reason turned up in my Facebook feed the other day. A friend posted a plea from a group called The Malawi Project, asking that people clean and donate their old medicine bottles to help provide safe and clean medication storage to the people of Malawi.

wpid-0314151851.jpgEarlier tonight, I started cleaning my old medicine bottles. It took two and a half hours, but  I boiled, scraped and cleaned each bottle  (the remnants of glue were particularly annoying). It wasn’t fast, but after a while I got into a rhythm, and at the end I had a full box of medicine bottles that I’m going to post out to the Malawi project this week.

wpid-0314152131.jpgI know a lot of people who take regular medication, and while it’s a little time consuming, this is such a great way to help others and keep plastic out of landfills. Set up your laptop, start up a show you enjoy, and presto – a few hours later, you’ll have done something to help others in a really concrete way. And if you do, leave a note below – and help spread the word!

Your Health, Your Advocacy: What I’ve Learned About Communicating With Doctors

Image by caroline_1, courtesy of Creative Commons licensing.

Image by caroline_1, courtesy of Creative Commons licensing.

Recently, a friend posted this piece about doctors who “came clean” regarding the state of their ability to interact with patients during the course of treatment. It confirmed a few things I’ve learned over the course of the last year, and while I’ve wanted to write something about this for a while, it’s the piece that pushed me over the edge.

For those who don’t want to read the full article above, I’ll summarize: doctors are overworked and exhausted, drowning in medical administrative work, and this affects their ability to take a holistic and thorough approach to patient care. Patients who advocate for themselves often find that they ultimately reach diagnoses their doctors might not originally have reached.

There are two prominent examples of this in my own life.

The first example in my life where advocating for myself proved critical in receiving a correct and complete diagnosis has to do with the back injury I suffered earlier this year. I say “back injury,” but as it turned out there was a second issue that my doctors initially missed. (And I’d like to say here that I am extremely impressed by the service and treatment I received from my doctors; they were empathetic, consummately professional and fantastically coordinated in their treatment plan, and I would recommend them without reservation to anyone in the Manhattan area who required an osteopath, pain management specialist, or physical therapist. Drop me a line if you need their information.)

Initially, it was clear that I had a back injury, and as the horrific pain (I’m talking a legitimate 9 on the pain chart, only because I wasn’t passing out) I experienced started to diminish with treatment, I was sure something else was wrong. There was a second source of pain, which hadn’t been clear from the start. I was shown a diagram that demonstrated how the pain could be connected to nerve issues in my back, and we attempted treatment to address that source (which helped, if only slightly). Finally, after shuffling between two doctors (different specialties within the same practice) insisting there was something wrong in my hip, I was sent for another scan. What did it reveal? Additional issues. With my hip. Had I not kept insisting something more had gone wrong, the second issue might not have been discovered or treated, and I would still be in a fantastic amount of pain every day instead of the dull ache that currently intrudes on my day to day life.

The second example is a little more detailed and a little more personal.

I’ve largely avoided posting at length about personal mental health issues on my blog; apparently this is the issue that pushes me over the edge in that regard. It’s that important to me that people understand the critical nature of advocating for their own treatment. So here goes.

I’ve battled depression and anxiety for many, many years, beginning in my mid-teens. I’ve been on and off so many medications that in recent years I’ve had to go back and check records to determine what I’d already tried, because for over fifteen years, nothing worked. Or rather, medications and herbal supplements might briefly take the “edge” off a battery of symptoms I won’t get into here, but crushing depression always came back, and the coping mechanisms I was able to use tended to be self-destructive and insufficient. I would push forward with various doctors and medications as much as I was able, in short spurts, then despair and retreat when it became clear that I’d just spent months trying out a new treatment option that was ultimately unhelpful.

Just over a year ago, that changed. I had finally found an excellent cognitive behavioral therapist, who had recommended me to an excellent psychiatrist, and was seeing both concurrently, but as the stress of the holiday season set in, my symptoms started becoming more and more pronounced. Frequent, severe panic attacks were the least upsetting of my symptoms, which (if you’ve ever had a panic attack, you’ll know) is really saying something.

Through conversations with friends whose mental health experiences sounded similar to mine, I decided to start tracking my mood with a simple chart: every day, I checked off a box that indicated whether I felt depressed, “elevated” (i.e. more energetic/focused/productive than usual) or neutral. I tracked what medications I was taking, how much sleep I was getting, my alcohol intake, whether I had panic attacks, and more. On a daily basis. For three months. And saw a pattern starting to emerge. And rather than looking like a straight line with a few dips during depressive episodes…it looked more like a series of hills and valleys. The valleys were deeper and the hills weren’t as pronounced, but they were there.

Armed with these charts, I went back to my psychiatrist and we started having a new conversation. We started looking at different types of disorders and categories of medications. I brought up treatments that other friends had mentioned, and in an interesting turn of events one medication that had helped them wound up being the same thing another family member took (for a different reason). My doctor agreed that we would try this new treatment option.

And unlike the antidepressants I’d taken on and off for over fifteen years, the new medication worked.

I don’t mean like, “took three months to build up then gave me moderate relief,” either. I mean, two weeks after I started titrating up this particular medication, I was already feeling better. Within a month I had cut down significantly on separate anti-anxiety medications. Two months in, when my back went out and I found myself lying in bed for the better part of four months (before I could undertake even limited/minimal physical activity), I was stunned at how well I was able to maintain a positive outlook (with obvious, justifiable, and normal bouts of self-pity and sadness).

I felt like myself again – the self I hadn’t seen much of and had been trying to get back since things started going south in my mid-teens. Coupled with regular CBT sessions, the new medication brought me back to a place of emotional equilibrium, of being able to step back from situations and consider things from a more objective viewpoint without flying off the handle or melting into an emotional puddle. I let go of my self-destructive, unhelpful “coping” mechanisms, and didn’t miss them.

And none of it would have happened if I hadn’t taken an active role in figuring out what was going on, and advocating for myself with a doctor who, while (again) extremely competent, would not have had the information she needed to help make an accurate and overlooked diagnosis. Furthermore, a few months in, when I was feeling kind of physically gross, a friend mentioned that the medication I’d started taking could result in depleted amounts of a necessary vitamin, and I went to my Primary Care Physician to request a blood test. It turned out my vitamin levels were low, and I started taking supplements. Probably not life-threatening, at least in the short term, but if I hadn’t sought out that information and brought it to my PCP’s attention, I wouldn’t have known – and after taking the vitamins for a short while, I again felt an improvement in my day-to-day physical activities.

Finally, a third example, from the life of a friend who has recently gone through a heartrending and difficult experience: in the aftermath of her ordeal, she had a gut feeling that something was still wrong, but nothing showed up until she insisted the doctors perform a specific scan. When they did? They uncovered an issue that could have put her life in danger further on down the line.

What I’ve learned from my experiences and those of the above friend and others is this: we are all the best advocate for our own health. We are the ones who, barring actual cases of hypochondria, know when something is wrong. (And even a hypochondriac knows something isn’t right, it’s just that they think it’s something physical instead of mental. The signpost is still present.) It is our responsibility to both communicate with doctors about our concerns in a firm and informed manner, and in a way that helps guide them towards correct diagnoses and effective treatments

This doesn’t mean running off to Google and arriving at the doctor’s office with stacks of printouts from WebMD. It doesn’t mean insisting “I have XXXXXX disease because such-and-such.” It does mean doing some basic research, talking to others, keeping records of our own fluctuating bodies and minds, being aware of our own “normal” and our own “abnormal,” and in some cases, leaving the care of one medical professional for the care of someone who will listen to what we have to say.

In my own experience, I found I received better responses and care when I brought facts to my doctors’ attention rather than pointing them in the direction of a specific diagnosis (or making suggestions of potential sources of discomfort, rather than end-of-line diagnoses), and this makes sense: by presenting my own “diagnosis” as fact, I would narrow the scope of what my doctor might look for. Walking into mental healthcare professional offices and repeating a diagnosis that I’d been given at age 17, for which no treatment had been effectively found, resulted in doctors looking for solutions to that problem. Walking in and saying, “I don’t feel well in X, Y and Z ways, and here is some raw data I’ve collected, what do you think?” resulted in a real dialogue about me and about my health, without (to as large a degree as possible) the baggage of what had turned out to be a years-long incorrect diagnosis.

It’s not always easy to speak up when you feel your doctor may have overlooked something, but if they’re a good doctor, they’ll be glad you did. If they’re not, or if they’re dismissive, or otherwise make you feel as if you’ve done something wrong by advocating for your own treatment? Then you know it’s time to look for a new doctor. Looking back, the doctor who had made the first incorrect diagnosis about my mental health disregarded the most important question I asked her, and while I can hardly blame my 17-year-old self for letting the question go, if I’d known more at that time in my life I would have looked for a second (and third, and fourth, and…) opinion.

If speaking up on your own behalf is not something you feel capable of doing, then bringing along a friend or relative who can advocate for you is another solution to this problem – but it still relies on knowing yourself, knowing your body and mind, and being willing to communicate with another person about your thoughts and feelings in an open and frank manner.

Have you had experiences where advocating for yourself with a medical professional resulted in learning that your gut was right when it came to your diagnosis? If so, and if you’re comfortable sharing, I’d be interested in hearing about it in the comments below.

Any Ray of Sunlight (When it Comes to Medical Bills)

By Bike756 (Own work) [Public domain], via Wikimedia Commons

By Bike756 (Own work) [Public domain], via Wikimedia Commons

One of the major sources of stress I’ve faced throughout my battle with back injury this year has been ciphering out my medical bills.

About 15 years ago, I had a bad ankle sprain in the UK. My friends loaded me into a cab, we made our way to the local hospital, and I was treated and received pain medication, crutches and a bandage, all for free, even though I was just there on a tourist visa at the time. It’s an experience I’ve thought of numerous times while going through my current situation, and along with my time as a paying member of the NHS system in the UK during graduate school, has served as a yardstick (meter-stick?) against which I’ve measured my experience in the US.

At this point – four and a half months after my initial injury, I’ve lost track of how many bills I’ve received, how many checks I’ve written, how many times I’ve breathed a sigh of relief to get one bill covered only to gasp in shock at the price on the next bill to come in. I’ve calculated deductibles and max out-of-pockets, filed copies of bills with notes of dates and amounts paid, added charges up to determine whether I’ll be eligible for tax deductions and more. Since medical bills aren’t my only expenses, and they can be a bit unpredictable, they’ve been a consistent source of stress, and one that I’m happy to accept any respite from at all.

Today I got some of that respite.

I got a doozy of a bill yesterday. Well, to be clear, I got the first half of the bill almost a month ago, misplaced it, and got an updated copy including additional charges in the mailbox yesterday. I took one look at it, decided I couldn’t deal with the stress, and put it aside to deal with today.

I just got off the phone with the billing office. I think I may have made the billing office staff’s day — the lady I spoke to certainly made mine. When I gave her my details and asked her about setting up a payment plan (gritting my teeth with dread as I imagined the reaction when I let them know how much I would be able to afford every month), she said the following, and I nearly choked:

“The balance on your account is zero.”

I looked at the “amount due” in the upper corner of the bill in my hands. “I…are you sure?” I asked.

“That’s what it says here.”

I couldn’t believe it. “Can you…look, can I just check the account number to make sure?” I asked. “Because I’m looking at this bill and that’s really not what it says.” I read the account number off to her.

She confirmed my name. “Yep. Right now you have a balance of zero.” She briefly explained that because of something to do with my deductible and my out-of-pocket maximum, they were appealing the payment amount and would collect from the insurance company. Not from my bank account.

I thanked her, told her it was probably the best news I’d had in a month, and thanked her again. Hanging up, it was like a weight had been lifted from my shoulders. Well, part of a weight, anyways – that was far from my only medical bill, but it was certainly one of the more onerous ones.

At this point, I’ll take any ray of sunlight I can get.