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Monday, March 31, 2014

an open letter to doctors

In the last two years, I've seen many of you. I'm not sure of the exact number at this point, and I would hate to insult you so early on by mistakenly including chiropractors or naturopaths in my tally (calm down, it's a joke) but let's just say it's more than an ideal number. Don't get me wrong, I have nothing against you. I respect your profession more than you know. I trust you with my life and I genuinely believe you when you say that your number one goal is to help people. But I think that in order to truly help people, you MUST be able to appreciate the user experience...to understand the patient perspective. Here we go.

1. When you yourself aren't able to provide us a solution, try to put your ego aside and help us find someone or something that can. If you really feel like there's nothing more you can do to help guide us in the right direction, please don't become an additional barrier or source of stress. For example, if we call your office to request our medical records, please don't refuse to send them, forcing us to go through a completely avoidable complaint process with the U.S. Office for Civil Rights.

2. Modernize your practice and communication. It's 2014. Fax machines are obsolete and email is a perfectly acceptable (and convenient) means of relaying information. Also, you don't need to be an award winning typist, but when you are charging us hundreds of dollars per hour, don't sit in front of us using using the hunt and peck one finger method to record your notes. Worse yet, please don't decide that a voice dictation method is more convenient for you and interrupt us every twelve seconds through the duration of our conversation to repeat what we have told you into your microphone. That actually may be the opposite of efficient.

3. Keep enough chairs in your waiting room for all of us to sit. If cigarette smokers tend to linger on the sidewalk outside your waiting room, consider finding a solution to this problem.

4. Don't let us perceive your annoyance if we express concern about the drugs you've recommended. You understand the reality and statistics of adverse side effects because you're the expert. We are not.

5. If you don't provide us with new patient paperwork before our appointment, don't fill out the paperwork for us during the first 20 minutes of our one hour appointment with you. If you insist on doing this, definitely don't charge us $450 per hour.

6. Manage your schedule. We're reasonable people, and most of us will understand that emergences happen and certain situations warrant extra time and attention (which we're actually grateful for!), which means the occasional two hours spent in a waiting room are inevitable. But if you are consistently running 45-90 minutes behind, perhaps it's time to reevaluate your scheduling capacity.

7. Open your mind and try not to judge. If you're an alternative medical practitioner, don't scoff at the conventional path we've pursued. If you're a conventional medical practitioner, don't roll your eyes at our experiences with alternative treatments. Just because you haven't read the research doesn't mean the data doesn't existence. The data not existing doesn't negate an opportunity for you to learn something that could help more of us down the road.

8. Be empathetic. And no, that doesn't require a psychology degree or mean that you need to hold our hand and sing kum ba yah. It means that you need to be able to see the world, even if just momentarily, through eyes other than your own. Maybe it's our boyfriend's perspective you need to adopt. Can you imagine what it would be like bringing your significant other to doctor after doctor after doctor without relief? What their state of mind must be like? Their level of frustration and exhaustion? At the risk of sounding golden-rule-ish, how would you want to be treated if you were sitting on the other side of the table?

9. Don't underestimate the power of body language. Make eye contact. Shake our hands when we come into your office. Use a purposeful tone of voice. Don't reach into your pocket to check your phone while we speak to you. If we start crying, try handing us a tissue box instead of immediately turning around or looking away because it makes you feel uncomfortable. There is no level of intellect, degree, or salary that excuses you from exercising these basic social skills.

10. For the love of *insert respective greater power*, do not interrupt us repeatedly (or anyone, for that matter) when we're speaking to you. Don't just hear our story, listen. Some parts may seem irrelevant and we apologize because we know you have a schedule to keep, so be able to tactfully keep our conversation focused and on track. If this isn't a skill you possess, practice it.

11. If we cry during our visit with you because we're in physical pain and frustrated that we're not making progress, don't diagnose us with a mood disorder and suggest a menu of anti-depressants to help us feel better. This will make us feel misunderstood and discouraged even more.

12. At the end of every visit, confirm that we're on board with the treatment plan you've put worth. Ask us if we have questions or concerns that weren't addressed.

13. Last but not least, let us know you’re on our team. I know you can't promise us that you'll have the magic bullet cure, but make a promise that you'll support us. Don't assume that we already have a team of people behind us. Trust me when I say that all we want is to be able to leave your office feeling less hopeless than when we arrived. Saying something as simple as “I'm committed to helping you” could be all it takes.

Wednesday, March 26, 2014

B-More, round 2...plus some unconditional happiness

Since I last wrote, post-first round of injections with Dr. Crutchfield, I have yet to feel any relief or changes in my symptoms. Frustrating, yes...but like I explained before, the "average" number of necessary injections is 2.36 so still room for hope that they could actually help. Dr. Crutchfield assured us last week that it's still worth going through with round 2. If I don't experience any changes after that, we'll reassess and likely not proceed with a third set.

So Craig and I fly back to Baltimore tomorrow for my Friday morning appointment. In addition to the injections, he'll also review the radiology report from the x-rays I had done yesterday here in Phoenix. We're hoping to see an improvement in the ligament instability at C1/C2, as a result of wearing that sweet neck brace these past 9 weeks. It's been tough forcing myself to keep it on when I haven't felt a sliver of improvement in my pain. Case in point - I pulled up next to a friend yesterday at a red light. We rolled down our windows and he yelled "where's your neck brace??" and I said, "oh, it's right here" as I reached into my bag, which was sitting in the passenger seat next to me. Like so many other things I've done in chasing down this headache, the lack of positive feedback (that I can FEEL, that is) is incredibly challenging to deal with. I liken it to the frustration of someone trying to lose weight, who exercises and eats well every single day and never ever sees their numbers shift...not even a tiny little bit. As more time passes, it becomes harder and harder for that person to stay motivated...to feel like the small steps they take every day are propelling them forward.

Well that's kind of a bummer mindset to get stuck in. Until a few weeks ago, Craig and I had a no-fail remedy for my bummed out feeling, and that was YouTube-ing videos of cute puppies (obviously). Somewhere along the line, I decided that it would just be easier if we got our own cute puppy and that would save us the trouble of sorting through all of the mediocre YouTube clips. Wearing Craig down wasn't an overnight process...it took relentless commitment and persistence. Given that I'm not working right now, I convinced him that if we ever wanted a dog (which we knew we both did), NOW was actually the perfect time. So I arranged for us to visit a litter of black and yellow lab puppies and once we saw this face, there was no turning back.

If you're friends with me on Facebook, this isn't breaking news because I've probably blown up your newsfeed over the last week or so (you can unfriend me, I'll understand). But our little Charlie girl truly is the most welcomed source of unconditional happiness for both Craig and I. It doesn't matter how shitty you feel...try looking at this and not smiling.

Friday, March 14, 2014

First visit with Dr. Crutchfield

Monday's visit with Dr. Crutchfield in Baltimore went as planned. Fortunately, he had already received ALL of my records back in January so at least it didn't feel like we were completely starting from scratch. Based on the examination and review of my fluoroscopic motion x-ray, he didn't see any signs of traumatic brain injury (always a good thing), and agreed that all symptoms are likely coming from the rocking of my C1/C2 vertebra and the consequent inflammation around my occipital nerve (also known as "occipital neuralgia"). By definition, occipital neuralgia is caused by the occipital nerve being trapped and irritated by the tendons of the back of the neck. Every time my head moves (which, let's face it...is pretty much all of the time, even when my activity level is modified) the nerve will be irritated and can cause a headache that extends over the top of the head to the temples and behind the eyes (exactly where I feel my pain).

The doc was so "impressed" by the clarity of my instability that he asked my permission to use the imaging for a presentation at an upcoming neurology conference. Knowing that some doctor (and ultimately, patient) out there could potentially learn from the journey I've been on, even if just from a single step, is at least a gratifying feeling.

So Dr. Crutchfield proceeded with the first round of injections as planned, which contained Lidocaine (a local anesthetic) and Kenalog (an anti-inflammatory corticosteroid). On the right side of my head (which is the better of the two) the needle slid right in, but on the left side I literally heard and felt the "crunch" of the needle going in...proof of just how inflamed the area is. Gross.

He reminded us that in his experience, it takes an average of 2.36 injections for patients in my situation to feel relief, with an ultimate success rate of 86%. I'll continue wearing the neck brace and before I head back to Baltimore for my second round of injections in about two weeks, I'll have another x-ray taken here in AZ. When Dr. Crutchfield looks at the x-ray, the instability should ideally be improved, given that I'll have been in the brace for 9 weeks by then. IF there's still too much mobility at that 9 week mark, we'll talk about another approach to PT to focus on my deep intrinsic neck muscles.

If the injections DON'T work, it could be because of accumulated scar tissue. If that's the case, he would refer me to one of his colleagues, Dr. Ducic at Georgetown University Hospital, who performs nerve decompression surgery. He's actually the surgeon who performed Brianna Scurry's surgery from that story I mentioned a few posts ago. That surgery has a 91% success rate. I REALLY don't want it to come to surgery, but still lots of hypotheticals between here and there so for right now, I'm trying just trying to take it one step at a time.

I left my appointment on Monday with prescriptions for three different medications, which I've been on now for a few days...
1. A Methylprednisone Dospak - the anti-inflammatory steroid
2. Tizanidine - a muscle relaxant to help my neck muscles calm down
3. Gabapentin (i.e. Neurontin) - an anti seizure drug to help bring the pain down (also the one I was on last summer and stopped taking because it made me feel like shit, but this is a much, much lower dose)

I'm not a huge fan of being on this stuff, but I've had to just accept that it's not a long term solution, but simply part of the process. When I expressed my concern about side effects to Craig, he reminded me of one possible side effect I hadn't mentioned...pain relief. Touché.

So, that's the update. In case you haven't figured this out by now, my body likes to make things interesting...so, no...I haven't yet felt any relief from the injections or medications this week. Given the statistic he provided about the average number of injections needed, I shouldn't feel too discouraged, although he did say that he would expect at least SOME relief to justify performing the next round. Right now we're waiting to hear back from him to figure out what to do if I don't experience any changes before the end of the month when we're scheduled to fly back to Baltimore.

Thanks all for reading...and for all of the love and support along the way :)

Sunday, March 9, 2014

Quick trip to Baltimore

Right now Craig and I are on board a plane headed for Baltimore, MD. Tomorrow morning I have my first appointment with Dr. Crutchfield, a vascular neurologist at Sinai Neurology. I haven't posted an update since my Hruska Clinic recap, so this seemed like a good time to do so.

Thirteen days ago, I woke up feeling better than I have in a long time. My headache was very much present, but at a low enough level of pain that I was pretty much fighting the urge to jump up and down. The ole' pain scale is virtually meaningless to me these days (hard to measure pain relative to pain) but I did happily report to Craig a "3", a substantial improvement in my normal 6-8 range. Unfortunately, it gradually crept back up over the course of the day. By evening, I was back to "normal pain" and have been there since. Seriously, what kind of f'd up joke is that?

So I've kept on keeping on the last two weeks...still wearing my glasses from the neuro-optometrist in Lincoln, performing my PRI rehab, going to Pilates, taking lots of walks, hammering out some interval workouts on the Keiser bike and Vasper at EXOS API. This past week in particular, I've been in a lot of pain. Whether the pain is causing the constant tension in my deep neck muscles or vice versa, I'm not totally sure, but it's likely a little of both. I had a bodywork session with one of the EXOS massage therapists, Eric, to try to loosen things up. He worked mainly around my t-spine with some fascial work on my scalp. I also saw Veronika for a few hours on Wednesday. We were optimistic (trying to still be) that after the PRI work, my body would be a bit more receptive to some of the manual work. Acknowledging that my neck definitely "felt different" (which could also be at least partially attributed to the neck brace), and in an attempt to improve circulation and alleviate tension, she worked on the vascular restrictions in my head/neck (I mean really, look at that vascular system??) and even my left arm (a limb I've affectionately coined my "metal arm", in honor of the two plates and sixteen screws that have called it home since a soccer collision 12 years ago). We've speculated that there could be some "tug" coming from my forearm, which compelled us to try some "scraping" later in the week too. This basically consists of rubbing body butter on my arm and Craig using a little tool to dig into the area around my scars.

I'll be honest, though, it's frustrating as HELL to still not be feel even just a little bit better. I'm (BEYOND) looking forward to tomorrow's injections with Dr. Crutchfield, but will say that it's been taking a lot of energy to prevent the perpetual cycle of hope and disappointment I've been experiencing from turning into a chronic state of discouragement. Fortunately for me, Craig has a pretty amazing way of restoring that depleted energy and hope. He's a real keeper huh?

I'll plan to post an update after tomorrow's visit, where I'm hoping to gain a better understanding of my expectations over the next few weeks. As of right now, I'm scheduled to fly back to Baltimore again at the end of the month for a second set of these injections, though I'm not sure if that will depend on the results of these. Fingers crossed either way.

To ensure that the "bummer" updates haven't exceeded the happy ones in this post, I wanted to include a few final thoughts. As I mentioned earlier, I've started a part-time entrepreneurship program at SeedSpot, a local non-profit that helps to incubate businesses with a social impact. On Wednesday mornings we have "localpreneur" sessions, where been-there/done-that's provide motivational and subject matter lectures to the group. It's super interesting. This week, one of the speakers was a woman named Asha Wadher, President of a local IT company called Atmosphere Solutions. She presented her own entrepreneurial journey through a truly authentic and inspirational series of "lessons-learned".

Granted, I'm definitely more consumed at the moment in operation-get-rid-of-headache than I am in starting my business (or anything relating to my career for that matter) but throughout the lecture, I couldn't help from drawing parallels between almost every point she was making and the unique and unplanned journey that I'm on. I'll give you a few examples of her take-aways...

1. Give yourself the gift of failure
Her message: Don't be afraid to mess up. Just like they had to try and fail at various web services before landing on their niche in e-commerce, the solution comes at the end of "failed" attempts.
I heard: I can't get upset and discouraged about every doctor's appointment that I've left in tears or procedure that hasn't worked because all of those experiences are leading me to the solution.

2. Listen to your gut and hone in on it.
Her message: Trust your instinct. Certain employees weren't working out but when she started reflecting on the initial interview process, she recognized a "gut feeling" she was ignoring.
I heard: I often feel overwhelmed by different treatment paths and others' input. No one knows my body better than I do. If taking drugs for my head doesn't feel right, listen to that feeling.

3. There's no silver bullet.
Her message: In business, it's not always about fitting a round peg in a round hole. You have to keep creating the dots. It's about the synergy of all things coming together. "Luck" is what happens when preparation meets opportunity.
I heard: Stop thinking in absolutes. One approach to therapy is probably not going to cure me. One procedure is probably not going to cure me. The synergy of everything I'm doing is what matters, which is why I should remain positive and motivated for each small step.

4. It's all about perspective.
Her message: The worst possible day I have as an entrepreneur doesn't even come close to the struggles that some people in the world face every day.
I heard: When you're out walking on a trail and you hear "right behind you" and a mountain biker flies past you and for a split second you feel sorry for your self that you can't be on your bike...look around and think about how lucky you are to be where you are and to be healthy enough to be out hiking.

There were a few more, but you get the idea.

It was inspiring for me to hear these messages, even if I was choosing to hear them out of context. As I'm sure any person in chronic pain can relate to, not being able to do the things you want to do or feel that way you want to feel, day after day,has a way of deflating confidence that you'll ever be capable of doing or feeling what you want. And whether you're building your own business or trying to get rid of a headache, self-belief is something you simply can't afford to lose.