I’m writing a retrospective, looking over the past year. It’s one good way to get my head out of the muddled present.
It’s gratifying to see how I’ve matured as a writer. Most of my posts this year have been solid, practical, and reasonably well-put. I don’t say that as a matter of ego (much), but as a matter of professionalism: if I’m going to be doing this, I should be doing a good job! I’m constantly trying to improve. There is always room for improvement, a fact which I find intriguing more than frustrating.
The arc of 2013 was interesting: started off very rough, so rough I had to completely revamp my pain rating scale to ignore the question of pain, and go straight to the question of function. And even that was pretty iffy. In retrospect, it was actually pathetic.
I moved out of the LA area and in with my beloved – at last! – and rediscovered fresh air and sunshine, which is a great help with the body and mind, I find.
I worked on what I had learned at USC, (here’s one and here’s another example of using those mental tricks) and, in parallel, I worked with my lawyer on closing and settling my work injury case. (I wasn’t able to discuss that at the time, as it was an open legal issue. Now, it’s not. That’s what we call foreshadowing 🙂 )
To my consummate relief and delight, we succeeded in crafting an offer that was acceptable to all parties, and we finally closed the legal aspect of this case – after almost exactly 14 years since my first injury, 12/1999.
Last week, for the first time, I was able to get my medication without needing anyone’s approval. That was a great day.
We have another move coming up in a couple of months, and the idea is to go where I can get all the massage, acupuncture, and chiropracty I need. It’s a much shorter commute to LA, which, I hope, will mean shorter recovery times from those trips.
Moreover, now that I don’t have to argue about my care, I plan to go back to “class” and try to recapture some of what I missed in 2013.
2013 was a lot of hard work, but a lot less brutal than many of its predecessors.
From where I stand, 2014 looks like it’s going to be a lot of work too, but I sincerely hope – I almost expect – to be considerably stronger at the end of it. We shall see.
Happy and painless 2014, with hopes for full remission and possibly total healing for us all! Hey, I dream big 🙂 Postscript:
My partner is becoming better acquainted with what this disease does to me. He wants backup.
I know of two of my compatriots who’ve died of CRPS this week, people I was acquainted with online. The world is poorer without them.
So, what with one thing and another, and despite the absurd snafus involved so far, it’s time to finish up my will and legally establish a durable power of attorney for healthcare. Unless I achieve complete remission, I expect my death (hopefully long since) to be attributed to this disease. My executrix knows, and I trust her to see to it. CRPS is deadly, and it doesn’t get nearly enough credit for that.
If you haven’t already done so, I encourage you to take care of these things, too. It’s very freeing, and the conversations you have around it can be useful beyond themselves.
Being better prepared for these brutal and terminal issues frees up a lot of energy for living and enjoying it. Really 🙂
Today’s images are a sampling from the newly-released online library of digitized images from Oxford University’s Bodleian Library, one of the oldest extant university libraries in Europe, with images from all around the world. Enjoy 🙂
I’ve written before about the recurring message from some self-described healers that I must be sick because I think wrong, my soul is awry, I want this subconsciously, or some similarly cruel and blaming trope. (Pardon my speaking so plainly, but I have always been very likely to call a “spade” either a shovel, a playing card, or an African-American, depending on what the original speaker meant.)
I went through quite a few years of believing that myself, which is one reason I feel free to call it what it is, now. I know what it is from the inside. Like the child who gets beaten, I’d like to imagine that I have some control over the situation, so I try to believe that I’m responsible for it. But believing that does not make it so.
What would happen if I told a child who gets beaten that it happens because the kid thinks wrong, or because something is awry with that child’s soul, or because he or she subconsciously wants to be brutalized and abused?
I’d probably get lynched, and rightly so.
There is such a thing as random chance. There is such a thing as being in the wrong place at the wrong time. There is such a thing as bloody luck. (Insurance companies know this, and people with consistently bad luck — regardless of actual, verifiable skill — pay higher rates for certain kinds of insurance.)
I used to be a trauma and triage nurse. I heard uncountable numbers of people cry out, “Why is God punishing me like this?”
To which I said, more than once, “You’re not being punished! Sometimes things just happen, and this time it happened to you. It’s going to happen to someone, and what makes you think you’re immune from being a member of the human race?” (Said with a nice smile, of course.)
I wasn’t always there with the pat-pat-there-there (you’d be amazed how little that helps with the heavy stuff), but I could usually be counted on for the proverbial whiff of coffee.
Some people believe that there is a reason for everything, and if it gives them comfort, so much the better.
Me, I’m absolutely clear that reason is what we bring to life, not vice versa. The universe tends towards entropy, which is, perfect chaos; our fragile rafts of order, which we impose on our lives, are temporary structures.
I’ve had so many of these rafts, each of which I called my life, blasted apart with me in them, that I no longer imagine either that I have to have one to live, or that I’m incapable of building another.
I can live without coherence in my life for awhile, and I can always make more out of raw materials. These days, I recognize everything as temporary. And that’s neither good nor bad, it just is. I can have feelings about it, but that doesn’t really change things, except to make me happier or sadder.
I’d rather be happier, but what I’d really rather do is get on with things and stop dithering. I’m getting better at bringing order with me, and that gives my ANS a break so I’m better equipped to handle the chaos that inevitably barges in.
There’s an inward sense of riding the waves, rather than trying to flatten the ocean, which epitomizes my handling of life — especially life with CRPS.
Joseph Campbell put this in his usual velvety prose, sounding much more spiritual and impressive:
And so this brings us to the final formula of the Bodhisattava way, the way of the one who is grounded in eternity and moving in the field of time. The field of time is the field of sorow. “All life is sorrowful.” And it is. If you try to correct the sorrows, all you do is shift them somewhere else. [Good point! //Is.] Life is sorrowful. How do you live with that? You realize the eternal within yourself. You disengage, and yet, reengage. You — and here’s the beautiful formula — “participate with joy in the sorrows of the world.” You play the game. It hurts, but you know that you have found the place that is transcendent of injury and fulfillments. You are there, and that’s it.
There’s nothing in there about being above pain or beyond illness. It’s about having illness, having pain, and being there anyway, because you know there’s more to it than the illness and the pain, and the “more” is what matters in the end.
Which raises the interesting question: Is life *supposed* to be a bed of roses? Because, if it is, then most of us are getting gyped!
Many people say they deserve better, but what does that have to do with anything? Most of us deserve better, but I haven’t noticed things improving with that approach. Deserving isn’t the point. I get what I get, and what I make of it is the real litmus test of my life.
Are we supposed to reach for a painless state of perfect health and earthly bliss? Are we supposed to stay stuck in our ideas of what constitutes a life worth living, and keep reaching for that, whether or not it’s ever in reach?
Is that chronic state of dissatisfaction with the lives we have, right here/right now, really the point?
Or is life supposed to be one heck of a ride, where we don’t get to choose it, but we do get to choose how we handle it?
I think it’s one heck of a ride. But that’s me. And I know I’m not immune from being a member of the human race, so I take my chances — and this illness was one of them.
I’ll take this life, warts and all, and be grateful. CRPS is a spectacular pain in the neck, a huge nuisance and a vile burden to carry, but it’s not the sum of my life.
I aim to handle this ride with all the poise I can, because it’s about a lot more than one rotten disease. And I certainly have some good company on this ride.
P.S. The international network of CRPS bloggers is posting about how we handle the holidays this month. I avoid the whole circus, as you can see, but beam benevolently on those who choose otherwise. All the gifts I had to give went out between May and November. I spend winter getting through the winter, and that’s enough to manage, thank you 🙂
I collected health info on others for years. I’m what clinicians call “a good historian” — and in the health context, it means someone who can tell you exactly what happened to them and when it happened, and they turn out to be right.
This is fine… as long as I can keep track, and as long as the story is short enough for someone else to remember after a single telling.
This isn’t going to remain true for any case over a couple of years in the making, and certainly not for a case that even started out with multiple diagnoses: volar ganglion, tendonitis, and repetitive strain.
When I noticed that a doctor’s eyes were glazing 5 minutes into my recital of events, I knew I had to do this differently.
I started keeping a timeline. It was a nuisance to set up, because I got injured at work, and U.S. law doesn’t necessarily allow me to get copies of my records under those circumstances.
So I drafted my first timeline from memory, journal entries, and my datebook, and asked my doctor’s staff, as sweetly as possible, to please check the dates for me. They loved the timeline and were happy to do so.
As you can see, this is before I had a lawyer, and reflected my personal tendency towards information overload:
As you can see, I decided to keep my timeline in a table. I found that to be the most natural way for me to organize the layers of information in a readable way. But then, I had just finished hand-coding and debugging about 21 pages of HTML tables in raw markup. Tables were easy for me!
To some people, a table of text just looks like word salad.
I can understand that.
There are other ways to organize information: brain maps, fishbone diagrams, bullet lists with nested lists, even labeled images linked together. Search any of those terms, or even terms like “information architecture” or “flow charts”, to look for ideas.
I took a later version of this to my first QME (QME=Qualified Medical Examiner, a consultant called upon when a U.S. insurance company disputes care in an injured-worker case.) Bless his stern and rock-bound heart, he gave me excellent advice. Here it is, as close to his wording as I remember:
“Leave out the insurance stuff. It’s not my department. It’s distracting, annoying, and clutters up the timeline for me.”
(I was not offended, because I’ve worked with a lot of hotshot doctors. I fully expected the brusqueness and just listened to the words for information. That information was pure gold.)
“In fact, thin this out a lot. I want facts, data, not suppositions or what you read. I want to know exactly what happened to you and what your doctors said or did. Everything else is filler. I’m a doctor, so doctors’ ideas are what I care about.”
(That was frank! And an excellent statement of inherent bias, which I really appreciated knowing up-front.)
“Take out the personal impact? No! No. I want that in there. It tells me how this really affects your life, and I should know that.”
(He was almost human when he looked at me then. It was a cool moment.)
“But I DO want the personal impact to be visually distinctive, so I can screen it out when I’m looking for the medical part alone.”
“I’d also like to be able to find your work status more easily. This is a worker’s compensation case, after all.”
That man should advise more designers. He’s retired from his medical career now, and I hope he’s enjoying himself immensely.
My next timeline, for my next QME, was much leaner and it distinguished between three key types of info: straight medical information, work status, and personal impact.
Did you notice how the hand images I wrote about before are referenced right in the timeline? This is a great way to build your case. The pictures kick the message of your disease progress and your needs right through concrete.
Incidentally, this uses mutually-reinforcing teaching principles: multiple sensory inputs, plus multiple paths to the same info, equals excellent retention. Your doctors will really be able to remember what your case looked like and what happened along the way, what worked and what didn’t.
Dr. F was pleased to see the table and thought it was basically a good idea, but looking at it through 78-year-old eyes was a different experience. He gave me his own feedback, speaking as someone who had gone through more medical records and had more problematic vision than anyone who’d looked at it yet:
“Yes, it’s nice that you picked out the work status, but I want to be able to see surgeries, x-rays, the really important stuff, just as easily. No, even more easily.”
I picked those out in bold and flagged them in the left column:
Before long, I learned to condense multiple entries so I could use one row for several visits that were about one issue, or where there wasn’t much change:
Then I saw a doctor who had more human sensibilities. He said,
“Why not use colors? I want to see surgeries and tests in different colors.”
I asked, “Do you want the different kinds of tests in different colors, so you can distinguish Xrays from MRIs from nerve studies at a glance?”
“No, no, that’s too much. I can read EMG versus MRI; I don’t want too many colors. I want the surgeries to really stand out, though. Put them in red.
“And I want to see the legal pivot-points, too, because that affects your case.”
Then the first page grew legs. Someone along the line said,
“One more thing. I’d really like to see your allergies and medical-surgical history immediately. If you could put that up front on this, that would give me the most critical medical information right off.”
That was a real forehead-smacker for me…
I used to be a triage nurse. I used to collect certain information on every patient I saw, regardless of age, sex, race, or what they came in with.
– Name, date of birth.
– Any medical diagnoses.
– Any surgery, with dates.
– Current medications and doses (if they recall), and what they take it for. (This fills in a lot of holes on the medical and surgical stuff — you’d be surprised what people forget. “Oh yeah, my heart stopped last month.” Good to know!)
– Allergies — and what the reaction is (because there’s a world of difference between something that gives you a stomachache and one that stops your breathing, and we need to know this if it winds up in the air or, heaven forbid, the IV line.)
This is basic. This is absolutely basic. It’s essential information that should be immediately surfaced on every patient’s chart. How could I take for granted that it would be easy to find in my medical record? The whole point of needing the timeline is that, after a couple of years, my medical record was a mess!
Also, after years of popping from one specialist/QME/consultant to another, I got tired of having to dig out the same demographic and billing information every time they had to generate a new chart.
I had a brainstorm: make the first page into a billing/demographic sheet, add the triage information, and start the table on its own page after that.
It all goes together on the medical chart anyway, and one of the unsung truths of medical care is this: make life easier for the desk staff, and they will make life easier for you.
After all this time, I can put my whole history with this disease into one single document that totals 10 pages.
The first sheet has my contact, billing, and demographic info.
The second has my more-extensive medical/surgical history, medications and yet more allergies, and priority notes, highlighting my CNS sensitivity and emphasizing that cognition matters most.
The rest tells all the key points of 14, yes, 14 YEARS of injury and disease, in only seven and a half pages.
Here is the final result:
Every doctor, with one exception, who has seen this, has cooed — literally, cooed — with delight. They ask if they can keep it (I tell them to put it in my chart, so they can always find it. “Ooo, great!” they say.)
This one doctor looked at it, laughed rather sardonically, and said, “You spend way too much time on this.”
Clinical note: For the record, that is not an acceptable response. What clinician makes progress by dissing patients on the first visit? Right. None. The thing to do here is ASK; in this case, ASK how much time this patient put into creating the documentation. The answer certainly surprised this one.
I set him straight, in my sweetest tone of voice. I said, “After the initial setup, it requires only a couple of minutes of maintenance every few months. That’s it. Moreover, you’re forgetting that I used to be an RN and a software documentation writer; this information is easy for me to understand and easy for me to organize. If I CAN’T do this [gesturing to the document in his hand], you need to check for a pulse.”
He never sassed me again.
However, most of what I told him is true for all of us.
We are the subject-matter experts on our own bodies. Never forget this and never let anyone tell you otherwise, because they are wrong. You ARE the subject matter expert on your own life. Nobody else really knows how you feel or what you’ve been through.
It’s in your power to communicate that clearly enough to work with. It’s just a matter of figuring out how.
Once you get a timeline set up and put in the key events so far, it takes very little to maintain. I update mine before every key doctor visit — when I see a new one or when I need to see a QME or, of course, when I think a doc is losing the plot.
It takes me less than half an hour to update contact info, meds, and current entries, and I do that once or twice a year now. That’s a great effort/benefit trade-off!
Moreover, keeping a timeline has life-changing benefits besides simplifying explanations to my doctors. Every long-term patient can see how utterly transformative these changes can be:
The doctors take me and my case absolutely seriously from the get-go (or else it’s obvious right off that this person is never going to, and I need to move on. That saves time!) It stops arguments and attitudes before they even start. It makes me almost human in any good physician’s eyes, and that’s nearly a miracle, because, generally, they can’t emotionally afford to think of their pain patients as human. (This explains a lot.)
My medical records are a lot more accurate, because the providers writing them have this great cheat-sheet right there to help them stay on track and keep their facts straight. This has saved me more grief, bad treatments, misapplied care, getting meds I’m allergic to, and chasing red-herring issues with the insurance company, than I could ever count.
I can keep my limited brain-space free for handling the appointment and looking ahead, instead of trying to wrestle my complex history into shape. This makes my visits a lot more valuable to all concerned.
I consider my timelines to be worth roughly 1,000 times their weight in plutonium. A little bit of effort has paid off thousands of times over, and made it immeasurably easier to keep this messy, protracted, brutally complex case on track for nearly one and a half decades.
Now that’s a good trick!
Put your name and the date on every page.
Put triage information (in second blockquote above) at the top.
Highlight surgeries and invasive procedures in bold and red.
Highlight tests and noninvasive procedures in a different color or style.
Highlight life impact, but keep it separate from medical info.
Attach the relevant doctor’s name to each procedure, diagnosis, or consultation.
Track adverse events.
Remember, this and all my blog work is under a Creative Commons Share-Alike Attribution license: do anything you want with it, as long as you don’t keep others from using it. I’d love it if you’d credit me with my work, but don’t let that slow you down.
Doctors believe what they see.The training they get and the laws they must follow all reinforce that. If they see it themselves, then it’s real; if they only hear about it, it’s hearsay, which is much less believable.
This is why it’s hard for us, as chronic pain patients with all sorts of hidden issues, not to come off as shrill and demanding: we expect them to believe what we say, and they find that outstandingly hard. It goes against everything they really know.
Therefore, show them. Put it in pictures, put it in print, and watch their expressions change before your very eyes.
This is the first in a series of posts about the documentation that I’ve used over the years. I’m starting with the time I got tired of pointing to my arm and saying, “Well, it was like this (gestures) last week and it’s like this (different gestures) most of the time this week. It’s only blue because of the cold.” And then he couldn’t remember what I said it looked like a week ago.
No help at all.
So I went home, put my hand and forearm on a piece of paper, and drew an outline around it. I came up with a set of symbols to show what I needed to track, and marked up the outline accordingly.
As my situation changed from week to week and month to month, I grabbed paper, put my arm on it, drew another outline (I really should have made blank copies), and filled it in with the current state of my arm.
Lo and behold, I hardly had to say a thing. One doctor looked over my stack of images and said, “Wow. They really tell the whole story, don’t they? I hardly need to look at the medical record.” He did anyway, but was pretty quick.
My office visits were a lot more productive after I started keeping those pictures. I called them “snapshots” and collected quite a few of them before the case became too complex and moved into different territory. (More on that later.)
Here’s the key I came up with to explain the symbols I used for the symptoms I had at the time:
As you can see, I just scribbled patterns which I found easy to remember. Nothing fancy.
Each sign is distinct from the others, except for the two strengths of “bruising” (I now know that that was CRPS discoloration), which are the same symbol at different densities. Makes sense, right?
Here are the first 3 images, and what made the difference between them:
Baseline, after working as best I could with the injuries:
After about 4 weeks off duty, resting and recuperating:
After 1 single week back at work on restricted duty:
That doctor was right. They really do tell the whole story.
See how easy that was? 🙂 All it took was a pen, paper, and a few notes.
Here are some tips:
Put the date and your name on every single one, always.
Be consistent about how you label things. They don’t need to learn different labeling systems, they need to learn your case’s course over time.
This is a good place to note your pain ratings.I annotated my snapshots with current pain range (at rest and on exertion), bullet points and narrative notes, but it took awhile to learn to keep those annotations very short and to the point.
I scanned all the snapshots into my hard drive, so I can recreate these at any time. I find it very useful when breaking in a new team, because the story told by my first few years of pictures really does tell the key parts of those first few years. They “hardly have to look at the medical record” to understand — and remember! — what happened.
Plus, you clearly don’t have to be an artist to make these pictures accurate and useful 🙂 If tracing around your own limb is too painful or awkward, there’s no reason not to ask someone else to do theirs. Alternatively, you could take a photograph and use image-editing software (available with your camera, or for free or cheap online) to mark the image with your signs and symptoms.
There are lots of ways to get these images going, with any set of tools. And boy, are they ever worth it.