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 got reacquainted with my body and, of course, my mind, with considerable help from a capable team at the University of Southern California. I felt like I missed a lot of the “coursework”, so to speak, because my cognitive function was so horribly screwy. (In fact, I had recurring nightmares about finding myself in school partway through the term, with no idea what my schedule was and not even knowing what classes I was taking, certain only that I was doomed to failure.)
Identifying my screwy cognitive function (or rather, dysfunction) as, basically, “acquired ADD” and treating it accordingly allowed me to play some catch-up after the fact.
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.
Photo: Joanna Poe in Honolulu
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.
Halleluiah!
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?
From a board game about Dick Whitington!
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.
Yes, I added the coffee cups.
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?
Did you get a horse, a camel, an elephant, or a pair of boots?
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.
They aren’t always paying attention.
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:
Click to link to the 3-page PDF.
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.”
(That’s fair.)
“I’d also like to be able to find your work status more easily. This is a worker’s compensation case, after all.”
(Good point.)
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.
Click for the full PDF.
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:
Click for a closer look at the PDF.
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.”
Easy enough.
Click for pretty colors. subtly used, in the PDF.
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.
TRIAGE INFORMATION:
– 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.
Click to see how I organized this info. PDF format.
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!
Timeline Tips:
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.
They should always move with such alacrity and glee 🙂
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:
key to snapshot scribbles
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:
My first stab at this. What can I say? I was a writer and musician, so I took my hands very seriously.
After about 4 weeks off duty, resting and recuperating:
It took 2 weeks just to relax, but I succeeded.
After 1 single week back at work on restricted duty:
Yeah. Sucks, huh?
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.
I’ve always been a wee bit daffy, so the additional daffiness of pain-brain, combined with the clumsiness of my brain’s shoddy un-mapping, re-mapping, or possibly dis-mapping of my body and physical environment, leaves my daily life simply packed with faux pas and prat-falls of one kind or another.
Mr. Keaton, clearly making a decision in a moment of pain-brain.
These used to upset me considerably, and I’d try to re-normalize the situation as fast as possible out of the combined distress of embarrassment and fear about the brain-invading nature of this disease.
This morning, I turned away from the counter too fast and knocked over the oil-filled heater. Instead of dissolving in humiliation and anxiety, I pursed my lips, finished what I was doing, and pulled up the heater when I had a hand free.
My sweetie J, as usual, said (without the asterisks), “You f***ed up,” with a unique combination of resignation and relish. (Nobody says, “You f***ed up,” like he does. It’s a gift.)
The more trivial the faux pas or prat-fall, the more pronounced those syllables are. “You f***ed up” becomes more emphatic, the more meaningless the mistake.
It never fails to put things in perspective.
Something I’m going to write about, once I figure out how, is The Flinch — the way that years of isolation, vulnerability, and abuse left me twitching in fear with the least expression of displeasure or annoyance in those around me.
Last summer, my excellent hostess L, who has a magical combination of boundless compassion and ‘no b.s. thank you’, was the first to let me know that I’d become a nervous nellie extraordinaire, and helped me start to retrain myself.
When I moved in with J in October, he let me know, after a couple of weeks of me jumping and flinching and asking permission to use my own damn home, that The Flinch was back and needed to take a lo-o-o-ong vacation.
“You f****ed up” is part of his droll approach to that inescapable fact of life, frustration. It’s part of his gift for surviving with his golden personality intact. He says things like that to defuse feelings before they even start to pile up.
I grew up in New England. Do I need to say more? We don’t defuse … what, feelings? We are very intellectual in the way we admit that we even have any. The first few times he told me, “You f****ed up,” I stared at him in shock.
I’m used to it now. I laugh, or agree “I f****ed up,” or turn it around and say, “Yeah, you sure did.”
I can’t do any of that and flinch.
Long ago, I observed that a good partner was one who handed you the way back to yourself when you got lost in the confusion of life. Simply telling me it’s no big deal is not that helpful — I know in my head that it’s no big deal, but the feelings in this over-torqued, dis-mapped brain all charge ahead nevertheless.
J’s way of showing me, by making the bigness of the deal ridiculous, stops that routine in its tracks.
I f***ed up. So what? I’ve got a fresh pot of tea waiting on the other side of that radiator. And that’s what matters! 🙂
This is a brain-dump from a recent social-media post. Since the same question was asked 3 times in one day on my groups, I figured I might as well put it all right here and link …
I used to be a night shift nurse and a home care nurse. Boy, do I have advice about helping your body sleep. Pick and choose what to start with and try as many of these ideas as you want, until it starts coming together and working well for you:
* Positioning. (Old nurses and physical therapists can be really good at this — we don’t get to write prescriptions, so we have to go with what really works and has no side effects. Oops, did I say that out loud?) Invest in enough pillows that you can, as needed, elevate appropriate limbs; support your neck; cradle your head; support your back and hips; pad your knees; get your upper body at a good enough angle so your blood doesn’t pool too much in your head; if you’re a tummy-sleeper, this can be really interesting because you need to slant your whole body from the knees up. Positioning, and the pillows/towels/blankets that requires, is generally the first thing to address.
* Have a regular bedtime routine. This gives your body and brain a consistent, reliable set of cues that it’s getting towards That Time. Our too-plastic brains need to be constantly retrained. Mine starts about an hour and a half before bedtime; I would do well to move it up to 2 hours,, as my descent into sleep is iffy.
* Turn off electronics (TV, phone, interwebby stuff) 1.5-3 hours before bed. There are several reasons for this: multisensory stimulation, EM activation, input from the outside world beyond your control, input you need to react to or decide not to react to (all of which suck up neurotransmitters.) All of this cranks up the primitive brain. Mine goes off around 8-8:30 pm.
* Listen to soothing, calming music for an hour or two before bed. I love classical chamber music, especially Mozart, Bach, Schubert, Rachmaninov, Pachelbel – elegant but not too emotional. Soft jazz or soft rock are also good for those who don’t care for classical. The brain patterns readily to music, so this is like free help.
* Speaking as a night shift nurse, I have to say that chamomile tea is the best, bar none, the BEST way to get the squirrels off the wheel. It doesn’t make you feel as “different” as sleeping pills do, so many people under-rate it dramatically. I noticed that most of my patients couldn’t even get halfway down the mug before they passed out completely, so I know it works objectively, even if it isn’t dramatic subjectively.
* Tulsi, or holy basil (Latin name occinum sanctum), is an herb from India that actually lowers cortisol. (It was used to teach novice monks what a calm mind feels like, so they could get it together with their meditation.) If you get that pop-awake in the wee hours, that’s probably cortisol, and tulsi at bedtime can do a lot of good.
* Ashwaganda has similar abilities, but I haven’t used it much so I haven’t studied it. See what you think. Some teas have both.
* All major herbal traditions have herbs that help. Tulsi and chamomile work best for me, but valerian works for others. I find hops stimulating, and wouldn’t go near poppy or belladonna because of my CNS sensitivities. Those with migraines, central nervous system and some vascular issues need to check twice before using some hypnotic herbs… This is well worth discussing with an herbalist, because they can make all the difference if you get the right recipe.
* Melatonin can help, too. There are two ways to use it: at a “metabolic dose”, which means one tablet can last 8 doses, and that’s just to remind your body to do its calming down; or at a pharmaceutic dose, in which case you can experiment with the different dosings available (usually from 1 to 4 mg, I believe.) See which works for you.
* You can also use 5-HTP before bedtime, which is a good serotonin precursor. If you’re on antidepressants, start at low dose and be mindful of its effects; it can potentiate your antidepressants, making them more effective at a lower dose. Being overdosed on serotonin can be counterproductive, as it makes it very hard to wake up completely!
* If nightmares are making it hard to nod off (often the case for me; I can tell I’ve been having nightmares if I can’t make myself calm down for sleep) then lavender oil dabbed onto either side of your pillow can be a real help. Or a lavender pillow, but remember to refresh it as needed. It’s very good for keeping nightmares at bay.
* Get what activity you can, pretty much every day, and stop exercising either before 5 or before 3, depending on your system. Activity helps regulate the autonomic nervous system, especially if you respect the body’s natural diurnal cycle and take enough time to let the neurochemistry slow down at the end of the day.
* Be mindful of your caffeine intake. Caffeine in the morning can be a huge help to keeping the diurnal cycle regulated, but it’s important to lay off it in the later afternoon and evening, because the disruptive effect always lasts longer than the real waking-up effect.
* Be gentle with yourself. Take the time to learn what works best for you. Be considerate of your household regarding lights and noise, so there’s less fallout in the morning. When you’re stuck awake, remember that rest is still restful, even when it isn’t sleep, and do your best with what you can get. If all else fails, make the most of the time, and try again tomorrow night.
Prolly enough to go on with for now… any other thoughts, folks? 🙂
The point is this: love is portable. Real, solid love can handle time and distance.
I’ve been saying that for a very long time. I didn’t know, however, that even the formation of love can cover distance. It can cross the globe.
I grew up overseas. Since there wasn’t always a credible, accredited school where we lived, this meant we kids were sometimes away from the family for months at a time. I learned to handle it in a curious way …
I realized, in a deeply personal way, that the same sky covered us all, and the same world held us. If I could see the stars, I felt very strongly that my brothers and parents could see those same stars — if not today because of clouds, then perhaps tomorrow or yesterday — and knowing that we could look at the same stars was a powerful comfort to me.
Star-forming region in the Magellanic Cloud. Photo from NASA’s Hubble project.
It doesn’t have to make sense, if it works.
As an adult, I got a dreadful disease that requires more research to manage and understand than one person can do in a lifetime. It took me weeks in the Stanford medical library to realize I had something truly rare. Once I was finally diagnosed, it took me months to begin to understand the complexities of what I have.
I also got the internet and a membership in an online pain group … and eventually a blog and social media accounts.
And suddenly, I wasn’t alone.
That first group’s administrator got me through the second major test of survival. (This disease has caused quite a few.) She’s on the other side of the country.
As I’d reached out to her in desperate need, I found someone else reaching out to me in a similar fashion, and she’s a nearly equivalent distance North, in another country.
Then I met the Swede, the Briton, the Belgian, the Icelandic… then Australians, New Zealanders, Chinese, Japanese, more Britons, French, French-Canadian, Dutch, Danish, Mexican, Argentine, and on and on and on. Any country with a health system sophisticated enough to think of, and look for, rare diseases, seems to have people with CRPS.
Let’s think about that for a moment.
OK, that’s long enough. It’s depressing.
The truly international distribution of the disease is almost as penetrating as the international distribution of the internet.
I could go on about the obvious benefits — having someone to chat with at almost any hour is a good one; having such a wealth of perspectives on health, medical delivery, and self-care is another; being able to discuss findings in one country that aren’t yet known in another is a hottie; and, of course, there’s always someone worse off to make me feel humbly grateful for my little all; but these are pretty obvious and probably stated better elsewhere. I’m not doing too well above the neck this week and I have to keep it simple.
This disease has stripped me of many of my friends, my careers (both of them: nursing and software), almost all of my hobbies, most of my strength and stamina, and pretty much every illusion about life and humans that I ever had.
Life can be bleak when it’s this lean. There has to be more to live for than usual, not less, when every day is another stab at the same tedious, repetitious, miserable slog that would make me say to Sysiphus, “Quit your whining, kiddo. Trust me, you’ve got it easy.”
But every connection that I make with my CRPS cohorts makes me stronger. And — how do I say this without sounding mushy or daft — these aren’t superficial connections. I would gladly stop a bullet for my friends, not that that’s likely to happen … but then, it’s easy to find something worth dying for. The trick is finding what, or who, is worth living for.
Any hour of day or night, I can log on and find a soul-sibling somewhere in this world, beyond first-languages and politics, beyond gender and race, beyond anything that might have mattered once.
I don’t have time to ask permission to use names before posting, so my own ethics force me to skip personalization, but the fact is, ladies and gentlemen, you light up my world.
When I get discouraged or disgruntled about this tedious, repetitious, miserable slog, and I can’t remember the self-care routines that can help me with it, instead I remember my friends: this one’s Celtic ferocity; that one’s wry wit; the painful eloquence of one; the utter gentle kindness of another; the ghastly spelling over the radiant sweetness of yet another; the shining fragile beauty and boundless courage of, well, all of them …
Every piece I write has to meet multiple tests of integrity before it gets posted: factually accurate, logically defensible, ethically sound, emotionally true (but as the rambling nature of this one indicates, brilliance is NOT a criterion, or I’d be posting a whole lot less.)
That list of criteria has a lot to do with who I think of when I write. It’s this absolutely global, polyglot, brilliant, loving, well and widely informed set of people. Each one of us has our strengths and our weak points, but collectively, we are astounding. Utterly astounding.
I have to live up to that, and be translatable … and it’s an honor and a challenge, every time.
CRPS has taken much, but the internet, mother wit, and a quorum of luck has given me infinitely more. I’m a better being and a better writer because I share the world with people like this … and I’m aware enough to know it.
I have plenty to live for. Screw the slog. Sysiphus, move over and I’ll show you how it’s done.
We visited our favorite hot springs last week. There’s a hot pool that’s very hot indeed. When I alternate between that and the cold pool, preferably dipping several times, it becomes quite a fabulous experience.
Halleluiah!
Whether it’s the lymph getting going properly for a change, or toxins (the few that are left) getting sucked out of my system, or my autonomic system finally getting a clue and just taking a break, or possibly all that and something more, I have no idea. But it can be really good.
REALLY good!
I did my dips and bounced gently on the balls of my feet in the hot pool, overflowing with something like gratitude. I’m no fool (I just take an off-road approach to life) … offering gratitude works, even with a conception of spirituality based more on quantum physics than religious dogma.
Things go better when I’m classy enough to express whatever gratitude I feel.
However, it has to be “true enough to write,” my ultimate litmus test of sincerity. (That really is my key phrase when I’m thinking about truth, writing, or both.)
There’s no fooling the All, because I’m part of it and I know the truth, even when I don’t want to.
Letting my head fall back into the welcoming warmth, I thought a moment, letting the feeling swirl through me like water.
Grateful for my life?
I have to be honest (though it may mean I have an inferior soul or something) … I’d love to be. I think that somehow I ought to be. But really, when you get right down to it… too many caveats.
Grateful for this day?
Well, y’know, there was too much of the day left that could go wrong. Experience has been too strong a teacher to make me grateful for something before it’s in the bag.
Grateful for this moment?
Ah yes, there we go.
I felt my spine let go of the last knot.
I could say, without hesitation and with perfect integrity, that I was definitely grateful for this moment. Completely, unwaveringly glad to have it. I was truly thankful for that heavenly bit of space-time I’d found myself in.
Heavenly, beautiful… grateful for it
The moment stretched and smiled and wrapped me in blissful arms. It made me stronger and more content, and I faced the bumps and mild insults of the rest of the day with fairly unruffled peace.
It turned out to be a good day. A day to be grateful for.
I’m not used to having TV. I grew up in Egypt, at a time when you only needed to take off one shoe to count all the TV channels in New Jersey. Didn’t even have to put down your real-sugar-sweetened soda to count the channels in Cairo — none of which were in English.
This delightfully expressive image is from wn.com
J is a more normal American, so between his restoration of normality, and my sense of novelty, we’re delighted to have TV again. His ear for BS is too keen to make sitcoms bearable, so we default to true crime, amateur survivalist, and judge shows, where people really are that idiotic and don’t have to pretend.
A couple of days ago, we stumbled across a show about felons on the lam. I think that was on one channel or another from noon to bedtime, except for the news. It was strangely entertaining, seeing how people fool themselves into believing the false lives they create.
For the past two nights, I’ve woken up in the wee hours from dreams of having done something I knew wasn’t quite right, then it turned out the feds really didn’t like, learning that they were displeased, then discovering they were after me (a mortal issue, since I wouldn’t survive a week in prison), then finding myself hiding and running and trying terribly hard to be clever enough to survive in my decidedly impaired mental state.
This morning, I woke up feeling, quite vividly, as if my limbic system — that set of tiny, nervous parts clustered deep in the primitive brain — was huge, red, and pulsing with overstimulation.
I’m no fool. I know how to deal with imaginary brain inflation.
I wrapped a band around it, colored the whole thing a pleasing blue, and gently and persistently cooled and prodded it down to a more reasonable size.
I also massaged the point between my eyebrows that my old acupuncturist used to needle when I was too jumpy to let her stick sharp objects into me.
When I was calm enough to do my brain exercise that stabilizes my ANS somewhat, I worked it like a plowhorse.
Once I had done that, I was actually capable of noticing how tense my system feels, and could mentally reach the lever that makes that inner spring gently unwind.
Then J brought me a nice fresh cup of hot tea in bed.
…Oh, heaven!
Then I read this out to him, and he laughed out loud.
Quite a few people I know are going into blogging. Most of them are CRPSers, all of them are clever and interesting, and I think that is terrific. I couldn’t find a Blogging 101 that wasn’t oriented towards cashcow blogs, so I figured I’d better write one.
Each writer who writes as themselves is unique, and the more of us who write truly about CRPS (or whatever we struggle with), the more others will begin to understand what’s really at stake when we talk about managing and even curing it.
The more, the merrier!
First, let’s knock off some assumptions…
What it isn’t
– A blog post is normally not a chapter in a book, or a news article, or a short story — unless it is. If you’re posting any of the above, it means you’re writing a particular sub-category of blog, which is a good thing to be clear about. (Generallly, a blog is a place to work out ideas which subsueqently turn into books or articles, we’re writing for.)
– It’s not a journal. Generally, it’s creepy people who want to read other people’s journals; most of the rest of us are uncomfortable with that feeling.
– With that in mind, writing a journal entry before writing a blog post can really help deliver a punchy, powerful blog post.
Then let’s talk about the almost unlimited potential…
What it can be or do
– A great place to work out ideas that later go into books, articles, and so on, with more focus and a better understanding of the audience. The interaction and feedback you get on each nugget of thought is a great way to learn how to tune your writing and make your ideas clearer.
– Pre-marketing. When people love your blog, they’re liable to be interested in any work that comes out of it: books, articles, even speaking tours or movies.
– Wonderful way to connect with people in your target group, the group of people you want to explain things to or share things with.
And now some basic guidelines…
What a good blog usually is or does do
– Each post has one or two main points. A post is a limited space, oriented towards people with not a lot of time — either because of work, attention span, or memory issues. Keep each post to the point.
– Short posts get read more. Kinda sad, but true.
– The above is a good reminder to keep the writing “tight”, that is, no needless words, no needless sentences, and no needless paragraphs. (Another reason why journaling is so helpful — we can get the need to gnaw on an idea out of our systems, so we can step back and deliver it more tightly and strongly in less space.)
– Be particular about which posts get long, and keep them engaging to someone outside one’s own head. Extended metaphors or an underlying plot can keep people reading.
– Serious stuff matters. Humor keeps people reading. The two often go together really well, or at least can take turns gracefully.
– Keywords/categories/tags (the terminology depends on the blog host) are important. They help people find your blog online, so choose terms that people are likely to search for.
And finally…
Further tips and suggestions from my experience
– As I have to remind myself now and then — my readers are people outside of my head, not in here with me 🙂 This helps me explain and unpack when my first impulse is to be telegraphic; it also keeps me from belaboring a point that’s bothering me more than it would bother someone else.
– I get a lot out of watching the director commentaries on good/entertaining films, especially if there are director commentaries on the deleted scenes and outtakes. Hearing how they chose to eliminate much-loved or super-cool scenes in service to the overall piece, is like a mini-workshop on creative structure and knowing what your priorities are. Most notably, the concept of eliminating “repeated beats” is key to keeping my blog posts solid. I’ve deleted some great lines, but they aren’t missed. It took awhile to realize that, if they won’t be missed, they aren’t needed.
And now for a practical note…
Choosing a setup for blogging on
If you have access to a server and a web geek, read no further. You’re set. Just do what they advise and ask for any help you need.
If you’re totally new to all this, it’s not crazy to go to http://blogger.com, set up a Google account if you don’t already have one, and go through their step-by-step process for setting up and customizing your blog. The upside is, they really protect you from spam and thin out the hacking issues. The downside is, once you’re hacked, you’re hacked. They don’t seem to have a way of letting you build in extra protections.
If you have some geek skills and can get access to a server or hosting service, you might prefer http://WordPress.com to build your blog site with. It’s highly customizable and you can choose from plenty of forms of protection, which you can alter, tune, and change as you like. Downside: the spam is horrific. Upside: You can always upgrade your hacking protection.
There are a growing number of options, but I’m describing what I know and have worked with myself. Hope it’s helpful.
Happy blogging 🙂
Link list
Predatory mis-links are so common now, I aim to be more diligent about providing lists of the links I actually use in my blogs. That’s not a bad tip, actually, and it was first suggested by one of my readers 🙂
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