Advocacy, My story

How to be your own patient advocate

dating-2Orthopedists, I’ve had a few. Three, to be precise. I feel like I’m playing The Dating Game. Hopefully, (bachelor-)doctor number three will be a keeper and not a polyester-leisure-suit wearing dud. If you’re just tuning in, allow me to give you a recap:

Doctor Number One works in a university medical center clinic. He sent me for a nerve conduction study administered by a resident who botched it, zapping me repeatedly on each contact point in order to get an accurate reading. The report indicated an “abnormal but incomplete study” because “patient complained and test was stopped” rather than “resident didn’t know how to administer the test and patient was tired of electric shocks.” Inconclusive. If we inject your wrist with steroids and you feel better, my doctor later concluded, you have carpal tunnel. Instead, I mostly felt weepy. The pain traveled from my thumb to my wrist to my forearm to my neck and back, only intermittently responding to treatment. Unhappy with my results and unwilling to wait two months to schedule a follow-up appointment, I went elsewhere.

Doctor Number Two is in private practice (pros: much nicer office; no wait time). When my symptoms didn’t respond quickly enough to another round of physical therapy, he suggested that I get an epidural in my spine. Only when I expressed concern about the possible hormonal side effects did he share his own experience. Laughing, he explained that his shot had made him so irritable that he fired one of his employees and so wired that he planted a giant raspberry patch in his backyard at 3am. But his back didn’t hurt, so it was worth it. Here’s the thing: I didn’t want to just alleviate my pain, which was now only in my thumb and forefinger. I wanted to fix the cause of it. I also had no interest in becoming a nocturnal raspberry farmer.

When it comes to chronic pain (in my case, for a diagnosis-defying repetitive stress injury), it’s easy to feel like you’re constantly complaining. That’s because it constantly hurts. My hands and arms were useless for writing, working, and sewing, my three main activities. Through this process, I have learned a little bit about self-advocacy.

Like the ladies on The Dating Game, I was optimistic about my third option, a doctor at yet another teaching hospital. Tired of answering the same questions and of not getting any relief, I decided to take charge of the situation. Here’s what I learned:

  1. Create a BRIEF timeline of symptoms, doctor’s visits, treatments, and results. There is no way I could have remembered all of these details, so I wrote them down. Doctors are scientists; they like numbers: how intense was the pain on a scale of 1 to 10? How many days did it last? What helped it improve? Just the bullet points. You can fill in the  rest later.
  2. Get copies of your medical records, including test results, and bring an extra copy to your visit. I never trust a doctor’s office to fax a copy of my records to another doctor. Do you see how busy that reception desk always is?
  3. Let them know what treatment has worked and what hasn’t. This includes writing down the names, doses, and side effects of your medicines or other interventions. I know that in order for me to get another steroid injection, I would have to exhaust all other options. I’m not there yet.
  4. Speak up. If your provider seems to be ignoring a particular symptom because it doesn’t fit a particular diagnostic profile, say something. For me, the weird muscular pain in my thumbs was not the result of nerve damage or tendinitis, but it was still very real.

So how did it go with Doctor Number Three? I began by asking if I could give my summary before he started asking questions. Like an attorney submitting evidence to the court, I handed over copies of my MRI, nerve conduction tests, and X-rays, with a flourish. He listened intently.

After about five minutes (which is all I needed), we went through a series of Simon Says commands. Does it hurt when you do this? Does it hurt when you do this? It never does. A few more questions and physical challenges, and now he, too was bewildered. Why do my thumb and forefinger hurt when I have no sign of nerve damage, carpal tunnel, or tendonitis? I started to doubt myself and question my reliability as a narrator of my symptoms.

To his credit, this guy did not seem frustrated with me for not fitting into one of his neat diagnostic categories; he was clearly up for the challenge. I finally said, in exasperation, look, it feels like it’s muscular pain in my thumb and forefinger. When I press here, I say, indicating the meaty part of the base of my thumb, it hurts. Same thing on the outside of my wrist – not sharp pain, not tingling pain, but dull muscular aching. I can’t use my hands for more than five minutes, and I can’t live this way.

I know I am (a bit of) an annoying patient: I refuse to settle for managing pain without understanding its cause. He understood that I certainly didn’t want an injection or painkillers, and offered a compromise: a glorious topical cream and a bunch of occupational therapy for my thumb joint. The only diagnosis we have settled on is that it is a repetitive stress injury. But, unlike the other two doctors who were too over scheduled, too frazzled, or too eager to medicate me, bachelor/doctor number three heard me out, so he just might be a keeper.

Our second date is next week. Wish me luck.

My story, Support System

Five simple questions

where-going.pngI learned today that my greatest strength is that I keep going like the Energizer Bunny, and that my greatest weakness is that I overthink things. I learned these things by asking a few questions to the right people.

Last week, while I was hoofing it on the elliptical at the gym, I was listening to one of my favorite podcasts: How to Be Awesome at your Job. The host, Pete Mockaitis, was interviewing Maxie McCoy, women’s leadership speaker and author of You’re Not Lost: an Inspired Action Plan for Finding Your Own Way. Through speaking with hundreds of women, McCoy heard several recurring questions: “Am I doing the right things? Is what I’m feeling normal? How do I handle this doubt? Where the heck am I going with my life?” She wants to reassure us:

You don’t have to know where you’re going in order to begin … we can find our way when we tap into a really deep sense of self-belief in order to take small step after small step after small step.

So how do we figure out which steps to take? McCoy says the first questions to ask are “What energizes you?” and “Where have you felt the most proud, energized, and connected to power?” Once you answer these questions, she wants you to ask yourself why. Do this three times. Then, she says, start taking steps to create action, no matter how insignificant the action may seem.

Back when I was feeling a little uninspired at work, I would come home and crochet for hours. What is it about crochet that brings me joy? Memories of sitting next to my grandmother, who would remind me not to make my stitches too tight. Expressing my creativity. Making things that would provide warmth and comfort to others. The next question to ask would be: what actions could I take to get more of that feeling in my life? By gravitating toward these I would be paving my own path as I’m traveling along it. Baby steps.

At the end of the episode, McCoy mentions a fabulous exercise that you can try to identify where you have the most energy (added bonus: you’ll get a boost if you’re feeling a bit lost): surveying people in your support system.

Here are the questions that she uses:

  1. Why am I irreplaceable?
  2. What is my superpower?
  3. What is holding me back?
  4. Where will I be in five years?
  5. What are my talents, potential, and unique value?

McCoy had one friend collect and tabulate these responses, and present them in person (without attribution) to her. When I tried this, I switched it up a little bit, emailing a handful of friends and family who know me well. Because I knew this exercise would take some time, I thought it would only be fair if I reciprocated. If we keep going, we’ll create a veritable Amway pyramid scheme of empowerment! What resulted for me were some really insightful conversations and some very genuine expressions of gratitude.

Give it a try. This Energizer Bunny thinks you should.

Productivity

Setting a morning routine

 

plancard
my top three tasks card

Before I could enjoy my very first Monday after leaving my job, I was already consumed with a new project: how to organize my time. Suddenly, the lines between work-me, student-me, and social-me were blurred. What was I going to do with no one telling me what to do?

If you’re going to leave your day job but know you are most productive when your days have structure, you have to be vigilant about establishing routines. I have spent the past six weeks trying to figure out the best method of managing my time, and the most important thing I have learned is to develop a morning ritual and stick to it. 

Here’s what mine looks like:

  • 6:00 – PT exercises
  • 6:30 – free writing/breakfast. I set a timer for 30 minutes and write while I eat. This writing doesn’t have any particular purpose; I’m just getting ideas out of so they don’t distract me all day.  When I go back to my notebook, I often find little tidbits that might inform a future project.
  • 7:00 – calendar review; fill in my index card with my top three tasks and follow-up emails or calls; schedule tasks in planner (you can find my template here).
  • 7:15 – writing sprint – I set my timer for 45 minutes and work on a writing project
  • 8:00 – check email.  I like to hold off as long as possible on checking email, and two hours is my limit. Besides, anyone who has a 9-to-5 job is not even in the office yet.
  • 8:15 – writing sprint
  • 9:00 – gym

Some of you may be thinking this schedule looks like your personal version of hell, but it worked for me. The underlying premise is that tasks that don’t get scheduled are harder to do, and we tend to underestimate how long it takes to do things.  For now, this method is working for me.

Crap! it’s after 9 o’clock – I’m late for the gym!

Support System

Accountabili-bitches

median
Where great ideas are born.

The other day, with a few minutes to spare before I had to go back uptown, my blogger friend Anita and I were sitting on a bench between the uptown and downtown traffic on Broadway at 86th Street. I would often pass these random benches and think, “who the hell would want to relax in the middle of Broadway?” I had my answer–two friends with ten minutes to kill while drinking iced tea. Once again, we were wistfully cataloguing the projects we wanted to finish and berating ourselves for our lack of focus and discipline.

Back when we both worked in Midtown, Anita and I used to catch up over a scone at Amy’s Bread each Friday. I suggested we reinstate this ritual. I thought, beyond just catching up, we could ask each other the question, “What are you going to get done for next week?” But, because Anita and I are ruthlessly honest with each other (she’s the best person to take shopping), I slanged it up: “What are you gonna do for next week, BITCH?” Then I thought about the other women in my life, who, after the obligations of work and family, rarely have enough time to devote to their own personal projects. What if we all got together (in person or online) for a weekly check-in? I was beginning to like this accountability buddy idea. Accountabilibitches!

What are you going to do for next week is not a resolution–it is setting an intention for action. Next week is less daunting then a nebulous “soon” or an impossible “next year” resolution. Next week is doable. In one week, I could go to the gym twice. I could write one blog post. I could cook one dinner from scratch. I could read one book. I could watch one tutorial on YouTube. With a little help from my friends, I think I could keep a promise to my next week’s self.

Even my mom loves this idea. To soften the edges of its name, I suggested she call her group accountabilibiddies.

What are YOU gonna do for next week?