Isy’s principles of blogging 101

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!
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 ūüôā 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 ūüôā

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 ūüôā

  1. Writing Like Yourself, by yours truly
  2. Blogger.com
  3. WordPress
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Persistence, chronic illness, mortality, and other perky subjects

I’m recovering from packing and moving to my homestead. [I’m sorry to say that I don’t have internet yet, and the library’s uplink is slo-o-o-o-ow. Images will be filled in once that’s corrected. In the meantime, you get to see how I flag where the images will go.]
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The cat is ecstatic. He’s getting muscular, too. He’s bigger than most of the cats I’ve ever had, and he’s only 8 or 9 months old. J is falling in love with his saucy sweetness — they’re a well-matched pair.

It took a week just to be able to think in a straight line again. I’m still very slow, but improving. Breakfast is my best meal, so I try to make it a good one — my stomach is not nearly as happy as the cat about all this.

Yesterday, as an aid to recovery, J and I went to the nearby hot springs for steaming and soaking.
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We usually get nicely parboiled in a couple of hours, but I got horrifically dizzy going from the hot pool to the cold. Usually it feels terrific (one reason I keep going back) but I think I stayed in too long — 2 whole minutes… When I was able to see, I noticed that my skin was bright red; I touched it, and it was as hot as if I had a fever.

That’s the hyper-reactive response we get with a twitchy autonomic nervous system (ANS.) This is why we don’t ice our injuries with most forms of CRPS.

All my skin’s blood vessels spasmed with the cold, then the spasming set off an alarm in my wackadoodle ANS, and my ANS ordered all those peripheral vessels to open wa-a-a-y up.

What does that do? Sucks all the blood out of my brain and out into my skin, that’s what. Result: dizziness to a frightening degree. J helped me get out of the pool without drowning, and got me safely benched.
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I realize I tend to overestimate my capacities, but that really was a first for me.

Periodically — and with increasing frequency — I get FED the heck UP with having these diseases — CRPS, FM, MCS, POTS, GERD … I’d have to be a British peer with medals and degrees to have that many letters after my name, in any other context.

These diseases are not recreational. They don’t just pop in, have a good time, and then take off.

They’ve moved in. They’re here for the long haul, or at least that’s what they seem to think. They take the concept of “persistence” to a whole new level.

It reminds me of something… H’mm. Oh yes.

In February 1999, I got a phone call at 4:10 am from my stepmother, telling me my father was dead. I still remember the way the word “no” kept echoing off the walls, until I realized it was me who had cried it out. I won’t describe the next few weeks, except that there was a lot to do (he had died in Egypt) and I learned a lot about the people in my family (interesting, not worrisome.)

After a few months, when the acute grieving was more or less behind me and I could drive safely and notice the birds and sunshine in a more normal way, I found myself unconsciously expecting him to be alive again. As if dying of a double heart attack face down in the water was like a curable cancer, horrific but eventually over. Then I’d catch myself, and that awful “no” would stab through me again.

There was a part of me that just could not get the permanence of death.

I haven’t spoken to anyone who has had this same experience. It may be so peculiarly daft that it could only happen to a wing-nut like me.

Death, take a holiday? Only in a Terry Pratchett novel.
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Over the next couple of years, I had plenty of opportunity to come to terms with the persistence of death, as I was bereaved of friends and extended family about once every other month. None of them came back.

I don’t recommend it.

And this is where Walt and Pogo come stumbling in from the past:
[IMG: “don’t take life so serious, son, it ain’t nohow permanent.”]

It’s impossible to have a rotten, devastating condition and not face my own mortality once in awhile, if only because the blank spot that bereavement leaves in the world sometimes seems better than this mess. And it’s a persistent mess, too.

The real question is, is it just as persistent as death? Will there really be no end to this? The poetic injustice is, that question might not be answered until my ashes melt into the sea.

There are good times and strong times and, of course, I’m almost constantly panning for those nuggets of gold, so don’t worry.

It’s just that anyone vile enough to stick a gun in my ribs and say, “Your money or your life,” is going to have to hold me up with both arms, I’ll be laughing so hard.

Nice work, Clint, but I think me and my cohorts could top this delivery…

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Rock stars

As many physicians have noted, treating chronic pain is peculiarly frustrating. Therefore, treating a pain condition as subtle, complex and intransigent as CRPS must be heartbreaking — though it’s never as bad as having it.

Don’t get me wrong
If you say hello and I take a ride
Upon a sea where the mystic moon
Is playing havoc with the tide

Most of us live in countries where there are practical limits on who we can see for care. Since there are few CRPS experts to start with, this tends to put us in tight spots.

So, meeting a new doctor, as many of us have said privately, is a bit like being a bride in an arranged marriage in a backward society*: you have no idea how you’ll get along, but this person is not only going to have a significant role in defining your life for the foreseeable future, but can torture and even kill you without any fear of the law.

14 year old bride with lowered head and sad, helpless expression, standing next to an elderly man who peers at her as if she were a new car he was looking over.

It sounds dramatic, but that’s the bottom line. Think about it for a minute…

For one thing, nobody likes being in so vulnerable a position.¬†For another, we’ve all paid the price for some practitioner’s ignorance or intransigence, somewhere¬†along the way. The fears are not theoretical; they’re real and appropriate.

Suddenly the thunder showers everywhere
Who can explain the thunder and rain
But there’s something in the air

Add to that the fact that chronic CRPS tends to hot-wire the fight-or-flight mechanism, and you have to realize that the doctor is facing a situation that requires about a million times more tact and respect than they ever learned in medical school.

Don’t get me wrong
If I’m acting so distracted

And then there’s me.

I used to be an RN, so I can use med-speak fluently and, more to the point, I’ve got the background to understand the scientific material I read when it’s time to explore a new facet of this condition.

I was dealing with a full-bore case of ADD due to the mechanical and chemical damage of chronic CRPS. At the time, I wasn’t sure what to make of my psychiatrist, Dr. Todd Hutton. He’s so quiet that I simply couldn’t get a bead on how much attention he was¬†really paying to what I was saying.

I was beginning to suspect that he was at least awake, which is a huge bonus in my book… But I had to have my duckies in a row, just in case.

Don’t get me wrong
If I split like light refracted
I’m only off to wander
Across a moonlit mile

Everything about CRPS goes off in different directions, so studying it is like working with refractions.

I studied up on the nature of the brain oddities that characterize ADD.
candleburn-1
Figured out where they overlap with the brain damage caused by chronic CRPS.
Sketch of brain, with bits falling off and popping out, and a bandaid over the worst
Then it was the neurochemistry.

candleburn-2

I have the neurochemistry of CRPS pretty well nailed, and found that, again, the overlaps with ADD were astounding.

How much of that awful, crippling fog we call “pain brain” is a treatable form of acquired ADD?

Do we really have to live like that?

I might be great tomorrow
But hopeless yesterday

I’m not so sure any more.

Then I looked at treatment modalities for ADD.

candleburn-3

The cognitive-behavioral stuff — like structuring your day, having contingency plans, staying in charge of your emotions, and creating ways to check yourself and to take care of yourself when things go wahooni-shaped — are pretty much identical, though CRPS adds a lot of material about pacing, communicating about functional and pain levels, and managing physical limits.

The pharmaceutical stuff has some interesting overlaps, too.

candleburn-4

Aside from narcotic pain control (which isn’t much good to many of us), treatment for CRPS neurochemistry tends to focus on serotonin, norepinephrine (noradrenaline),¬†and dopamine; treatment for ADD neurochemistry tends to focus on epinephrine (adrenaline)¬†and dopamine.

More overlap, or is that just a coincidence? Hah! No such thing, when we’re treating the brain.

So, after traversing my “moonlit (or candlelit)¬†mile” of research,¬†I showed up at the psychiatrist’s office with the following info:

  • ¬†It’s probably related to the CRPS. (Nod.)
  • ¬†It’s probably treatable. (Slightly qualified nod.)
  • ¬†I can’t have Adderall, et alia, because my heart is dicky enough as it is. (Firm nod.)
  • ¬†I could face Ritalin, et alia, but I’m already on Savella, which also boosts dopamine. (He shrugged and said, “Same molecule, different location.”)

After a bit more backing and forthing, he said, “How about Provigil?”

I’d seen a friend get hooked on it, so I didn’t leap out of my seat, but we talked it over. His reasoning was faultless. (Something I almost¬†never say.)

More than awake, he was really engaged with my case. So I took the leap of faith and said I’d try it.

Trapeze_artists_trimmed

He said he’d supply me with samples of Nuvigil (a longer-acting form) since the maker no longer supplies samples of Provigil. (Pharma companies only provide samples of what they still have under patent. They’re in it for the money, remember…)

Don’t get me wrong

If I come and go like fashion

I had the singular pleasure of going in for my follow-up, dressed professionally for a change, and reporting that:

+ I had enough energy to get outside and move around nearly every day. This means laundry gets done, there’s proper food in the house, and I can get some of that so-necessary exercise.

+ I had enough focus to put together a settlement offer, which the insurance company accepted. (WOOT!)

+ I could change focus at need.

+ I was driving better, thinking strategically and more able to pay attention to what was going on around me at high speed.

+ I could sleep better, because I’d been properly awake and engaged during the day. (OMG!)

– My anxiety was no worse, but when it did kick in, it was harder to get it to chill. That was one drawback, but not a major one.

– Nuvigil tends to build up in my system, until suddenly I can’t sleep at all. It took about 5 days to clear it after that. So now I take half a tablet (that is, about 75 mg) every other day. That works quite well.

+ It’s not perfect — it’s not like being well — but I’m so much closer to being myself that I can actually think about what to wear again. (I used to be kind of a fashion plate, in the intersection of classic, practical, and colorful, with a dash of steampunk.)

 

I told him, “Love and the relationships I have make life bearable. But being able to think, and be productive, and learn things, and get some work done, THAT’s what makes my life worth living. This is giving me my life back. I’m really grateful.”

If I hadn’t grown up in New England (land of the unspoken), I might have missed the slight lengthening of his spine, the slight lifting of his head, the slight brightening of his face, the tiniest lift of a smile.

For once in my life, a doctor of mine got to feel like a rock star.

It might be unbelievable
But let’s not say so long
It might just be fantastic

I got into the car and drove away on a shiny September afternoon in Pasadena.

On the radio, Chrissie Hynde was belting out,

Don’t get me wrong
If I’m looking kind of dazzled

And it put the seal on everything.

For a moment, I tried to stifle the beaming joy that shot through me. Then sanity intervened.

glee

What I wanted to do was pull over, slap on a headset, and dance on the glittering lawn in front of City Hall, arms wide and the sun sparkling through my starry lashes.

I wasn’t sure the police would understand, though.

Instead, I danced in my car, grinning fit to split my head, bouncing my red SUV to the Pretenders.

Drawing smiles even in LA traffic.

Sometimes, the only right thing to do is dance.

Big grinning woman in spectacular Hawaiian ceremonial dress dancing with her arms
Photo: Joanna Poe in Honolulu

 

Here’s the whole song. At first, I thought the visual story, with its false leads, dead ends, and triumphant ending, was distracting — then I thought about it for a second… ūüôā

* Common sense note: obviously, not all societies that practice arranged marriage are backward. I know too many couples who have an excellent partnership and tons of love between them, who were picked out for each other by their nearest and dearest. It’s not arranged marriage that’s the problem, but those situations where there’s a lack of choice and utter helplessness of one partner. That’s what’s backward.

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The Red Pen Technique (dramatic music, please)

This is probably the simplest, most powerful tool for getting your complex care back into the realm of sanity.

It’s easier said than done, but it’s worth it. More¬†valuable than words can say.

It’s a fairly simple 3-step process:

  1.  Get copies of your medical records.
  2.  Prepare: understand the records, get a colored pen, and stock up on post-its.
  3.  Mark it like you own it.

Here’s the step-by-step rundown of this process, with insider insights, tips and suggestions. (I apologize in advance for the clunky formatting. I’ll work on it.)

1. Get copies of your medical records

[Updated 3/2018 to reflect current trend towards soft copy documentation.]

In the US, you are LEGALLY ENTITLED to all the information in your medical chart. (Worker’s Compensation is a special case; you can still get copies through your lawyer or sometimes directly from the doctor, but don’t talk to the insurer about any of that.)

To get copies,

A. Call the hospital, clinic, or office and ask for the Medical Records department.

B. Ask what their process is for obtaining copies of your medical records. Most MR departments are honest, understaffed, and extremely literal-minded. Be clear, frank, and polite-but-not-wimpy; that seems to work well with the MR mindset.

i. Some will let you come into the office and make your own photocopies. They may charge you for the copies. Some may have soft copy they can send you on a CD or provide a secure way to download.

ii. Some don’t allow non-staff into the department and will make the copies for you (and it’s best to provide them with a list of what you want, so they don’t provide you with the usual thin, doctor-oriented version. More on that later.) They will probably charge you for pulling the record, making the copies, reassembling the chart, and packaging your copies up for you. They might fax them to you, but, if they don’t require you to come in personally and show ID, then the chart copy is usually mailed or FedExed. Soft copy may be free or cheap. Ask about the cost for each method, and if they don’t offer the method you want, ask if they can provide it anyway.

iii. Some will give you the runaround. In that case, be polite but firm, and let them know that you have a legal right to the information in your chart, so let’s figure out how to get it to you. (Never buy into a power struggle with petty power weilders. Just refocus on the goal — like with toddlers.)

iv. If you had films of any kind (X-ray, MRI, CT scan, ultrasound), ask how to get those films. You usually get them directly from the Radiology or Sonography department rather than Medical Records. They’re most likely to drop a CD in the mail for you. You’ll need software that can view DICOM images — do an internet search to find the best current free application for reading DICOM files.

The radiology departments no longer use film. They used to recycle it every 2 years, so the only way to keep those records was to get the physical films and hang onto them despite promises they’d demand to return them.¬†That didn’t mean you were any better or that the film was irrelevant in two years!

C. Follow the instructions they give you for getting those copies. Be sure to request copies of the following:

i. Doctor’s notes, both narrative notes and forms.

ia. Consults’/Specialists’ notes. (Yes, they need to be specifically requested in some facilities.)

ii. Medication orders. This is what was supposed to be given.

iii. Medication Administration Record (MAR.) This is what was actually given.

iv. Nurse’s notes, both narrative notes and forms. (These days, some places only have forms.) These should include Nursing Diagnoses (which gives a good idea of just how worried or confused they were about you) and daily tracking of what care was needed and provided.

v. Vital signs and intake/output sheets. (Includes fingerstick blood sugars when used.) This is usually background information, but every now and then there’s a nasty surprise. There is no substitute for the clarity and simplicity of this info.

vi. Results of tests. These include labs taken from your blood, urine, stool, saliva, tissue samples, or whatever else they examined. It can include psych tests, behavioral tests, and any other test.

vii. Readings. This refers to what a trained specialist concluded from looking at your films, ultrasound, EEGs, EMGs, EKGs, and so on. It’s usually a couple of paragraphs.

viii. Rehab notes: narrative notes, test results, and forms. This is what your PT, OT, and other rehab specialists saw.

ix. Discharge planning notes. Discharge planning is supposed to start as soon as you’re admitted. These notes will tell you what they knew or assumed about your context and abilities. Very useful info between the lines.

x. List of charges. This is what they’re telling the insurance company they did for you and how much it cost. This should include pharmacy charges as well as “floor” charges. Another place to find both corroborations and surprises.

xi. If they say, “Would you also like [something else in the chart]?” The right answer is usually, “Why yes, thank you, that would be helpful.” Sometimes they offer it because they’re so detail-oriented, but sometimes they offer it because it fits into the pattern of the care you received. Feel free to ask why they suggested it or what it relates to.

D. When you get your chart copy, either scan it into your hard drive before you do anything else, or make 2 more copies and put the original (clearly labeled) somewhere safe.

Some people consider this step optional. I won’t argue with someone else’s working style or legal situation; you’re the one best-qualified to decide how protective to be of your chart copy.

I have everything on my hard drive. I have dealt with a hospital, a federal agency and an insurance company that forgot, mislaid, misread, or destroyed part or all of my chart. I don’t trust any institution to get it right any more.

2. Prepare

When your original copy of your chart is as safe as you want it to be, take a copy to mark up. This is where the real fun begins.

A. Read the whole thing over once. Try not to get bogged down — this quick run-through will help you familiarize yourself with the lingo and the special way of thinking that’s used in the health care field. It will also give you an overall idea of what you’re working with and will shine a light on the most obvious gaps — in your knowledge or vocabulary, or in theirs. Put flags in the strangest, most egregious or excitiing parts, so you can refer to them quickly. Use post-its to comment on the page.

B. Whether or not your first read-through is quick, your second read-through will be a LOT more informative. Pick out and investigate the obvious holes in your own knowledge, looking up words and concepts that aren’t clear, or checking your assumptions about what they meant.

C. (You can start doing this in 2.B., but you’ll be better-equipped if you wait until you’ve got your vocabulary and assumptions squared away.)

GRAB A COLORED PEN. Mwahahahahahahaaaa!

Red, green, dark  pink, and medium purple are all great, because they stand out so well from the black and grey of the copy. Use a color you enjoy commenting with, in a pen that feels good to write with.

No black. No grey. Blue if you must, but it’s a very “normal” color and easy to overlook.

3. Mark it like you own it

Now that you’re prepared, are familiar with the chart, have the hot spots flagged, and know the vocabulary, you’re ready to TAKE BACK YOUR CARE.

A. Go through the chart with your colored pen.

B. Mark everything that is wrong, misleading, or unclear. (Feel free to color-code, if that works for you.)

C. Comment on:

i.  what the real deal was,

ii. what was wrong with what they wrote,

iii. your own observations,

iv. any evidence or witnesses,

v. and — this is usually relevant! — where else in the chart this error, confusion or lie is brought into question. (This is why you get the nurse’s notes. They tend to be accurate, front-line reportage of what happened at the bedside.)

Generally, you can keep emotions out of it. The facts WILL tell the story, and the reader’s own emotions will fill in the blanks.¬† If you can do this, then you will wind up with a much more powerful piece of documentation than if you’d given into the natural urge to editorialize. Sometimes, if I’m just too mad, I editorialize (and use expletives and call names) on separate paper, then, when I’m calmer and my thoughts are clearer, I go back and write in a calmer note.

D. Write (or tabulate, or draw; whatever works for you to nail your understanding) a summary of issues with the chart.

i. Pick out major issues, overarching issues, and the points where things really should have gone differently. (If you’re writing, use headings — that impresses the heck out of people.)

ii. Summarize the whole thing in a paragraph or two at the end.

4. Now what?

It’s up to¬† you. You have documentation that is worth presenting in court. (Yes, believe it or not, you can talk until you’re blue in the face and be only tolerated, but if you really want to persuade highly-educated people, then put it in print — with annotations. They will believe exactly the same thing in print, that they’ll be incredulous of when you speak.)

Regardless of what happens next, you will have a whole new approach to medical care. Your perspective on the whole business will change as a result of doing this exercise. You will be much more collegial with your doctors —¬†much less the supplicant praying for something beyond your control. You will speak about your care with more clarity and authority, and your care providers will respond to that, usually with more forthcoming-ness and respect.

Depending on the issues involved (and whether your case is already part of a legal process, such as Worker’s Comp), you can:

  • ¬†Send a (color?) copy to¬† your attorney. You can always do this. It’s guaranteed to get some attention, and your attorney is liable to¬† respond well to the nonverbal message that this is important enough to you to go to all this effort. That’s a big deal. Most clients of attorneys are kind of helpless. You set yourself apart with this.
  • ¬†Take it with you to your next visit with a key physician — the worst offender, or his boss, or the one who’s on your side and can help you figure out how to proceed most effectively. Be prepared to let the “good guy” take a copy, and consider bringing a copy for the “bad guy” since you don’t want to let your copy out of your hands there.
  • ¬†Arrange a meeting with the facility’s adminstrators to address the hot issues. Take it with you (or scan copies and show it from your laptop — lots of tech assumptions there) and let them know, kindly and clearly, what you want them to do about it. Administrators tend to be goal-oriented, so give them a goal. Tip: If they have legal counsel present, it’s good if you do, too. In any case, it’s not a bad idea to bring a couple of respectable-looking friends (“my assistants/associates/posse”) who have faith in you, for moral support — and so you’re not all alone on your side of the table.
  • ¬†Send a color copy to your local paper, your congresscritter, the medical board for your state, or the Department of Health, with a cover letter explaining your concerns and what you would like to see change. This could raise some attention, all right. (If your case is currently in a legal process, it may be illegal to do this. Ask your lawyer.)

If you’ve never done this before, you’re in for a transformative experience. Even if you do nothing further with it, your situation will feel very different, and you’ll find yourself facing future care with a stronger, clearer, more in-charge attitude.

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Relentless

My pain psychologist is very insistent that 90% of my day has to be predictable. This allows my nervous system to heal and re-stabilize to the extent that it can.

I cannot even fathom that. 90% of my day? Do any of you have those kind of days, ever?

matchgrins-horsenwoman_decamps-pauline_4blog
Pauline Decamps? I’d love to credit this fantastic shot. Correction invited.

She’s been right about everything else so far, so I’m working on it.

Trying to bring stability to any single part of my life brings the inherent instability of life into high relief.

  • Every commute to the doctor’s office is a crapshoot. There’s no knowing just how long it will take, if there’s parking on the other end, whether anything unpleasantly LA will happen along the freeways on the way.
    .
  • Every trip out of the house, with all the neighborhood dogs and the roads being under construction here, puts the rest of the day on hold until further notice. Especially when my judgment is in the hopper because of pain, dysautonomia, or¬†not being able to¬†eat enough to prevent hypoglycemia.
    .
  • Every day is a mine field of discovering things I’ve forgotten and have to find a way to deal with, trying to clean up the past while coping with the present and preparing for the future.

poison_skull

It’s heartbreaking trying to keep up with this, but I can’t stop. This disease never quits. It never gives a break. I must try to keep up.

I thought I was stubborn. I thought I was adaptable. I thought I could be relentless. I have to say, this condition puts me in the shade.

This is one of those articles I wrote to help myself find the nugget of gold. I’m still looking…

George_Goodwin_Kilburne_Writing_a_letter_home_1875

I’m¬†in a very small glass today, but that doesn’t change the scope of work — just what I admit I can do.

This relentlessness, this bitter intransigence, is part of any chronic disease. We find ways to cope, or we don’t make it.

  • I deal with the dietary restrictions by focusing on the wonderful things I can eat;
    antioxidant_foods
  • I deal with¬†weakness by learning to ask for help;
    .
  • I deal with the pain by focusing on what gives me joy;
    Crab_Nebula-crop
  • I deal with bouts of forgetfulness and confusion by automating as much as possible and using external aids like¬†a whiteboard, checklists,¬†post-its and the apps in my smartphone;
    200px-Check_mark.svg
  • I deal with the heart, lung, and endocrine issues by finding new ways to do things, and rehearsing constant self-control in every single freaking aspect of life.

It just wears on me sometimes. It’s a lot to expect of myself day after day after day after DAY.

Perhaps the nugget of gold is simply taking credit for my imperfect, ongoing attempts to manage an impossible body of work: staying alive and on the right side of the ledger, and trying to make it bearable. It takes some doing, and yet I’m here now. The future¬†terrifies me, but so it goes.

Marathon update:

A bloody pair of athlete’s feet, with ringworm that’s trying to consume my right foot, both fungi profoundly resistant to treatment‚Ķ Have been joined by an ingrown toenail which looks like a grandchild of The Blob… Which itself is hosting cellulitis.

So I’m off my feet for the most part, wearing slippers when I must walk. I have to knock the cellulitis back by Friday, so the ingrown (which is an outgrowth) toenail (though it’s really the flesh) can be cut away, and part of my nailbed stripped. All those loverly nerve endings…

old_school_surgeon

It’s going to be a rough weekend. Perhaps I should just have it all cut off, ha very ha. Too bad that makes things worse in CRPS.

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It’s a different world in here

TRIGGER WARNING: Body image. With a twist.

I feel like I’ve been inflated. If I get any larger, I may collapse in on myself and form a neutron star — possibly even a black hole.

"Portrait of the Quasar as a Young Black Hole" from NASA's Hubble telescope
Charming, eh? And round.

My pain psychologist isn’t worried. She thinks there’s nothing wrong with “a little comfort weight”, especially as I’ve been making such progress in her area.¬† Of course, she has a slender elfin figure herself.

This isn’t¬†the usual rant about weight and health, or the girly American whining about fat. This is about living from the inside out, and what happens when my physical vehicle takes up a whole lane.

Nursing has a diagnosis called, “Body Image Disturbance.” Take a look at that phrase for a minute. It’s very telling.

Body
Our physical interface with the world; the medium we use to communicate with others; the first sensory impression we get of our surroundings; the complex organism that gets us from one place to another; the thing that gives others their first sense of who or what we are.

Image
Our mental framework, or paradigm; the belief or understanding we have about our presence or effect in the world; the way others tend to think of us; the way we think they think of us.

Disturbance
Something awry — probably disturbingly so. Not good.

Do we need to address the usual social issues? Yes, skinny people get treated better, all across the board; fat people are far more likely to get abused and overlooked, and not just for sex — for everything. Lots of people have made lots of money writing lots of books about that, so read them if you’re confused.

Let’s move on.

I’m in a different sensory and physical world from what I’m used to, and it’s a really strange one. The experience of physical life from this different shape is, yes, disturbing.

My feet are pressing so hard against the ground that my shoes fit differently.¬† When I carry something, it pushes my weight over the tolerable limit and threatens to bring the CRPS in my feet back to life — and I had just about gotten rid of the pain symptoms there. The circulatory symptoms are another matter — zombie-foot is a regular event.

My cat floats above me by quite a few inches, when he should be lying more or less on my abdominal muscles plus a blanket of padding.¬† It’s weird to have to reach so far up from my spine to pet him — my shoulder rotates much further in my cuff than I’d expect. I’m getting better at feeling my joints, and this is not exactly a positive feedback loop.

My upper arms keep catching against my sides. This is rather disorienting, since I’m improving my sense of my body in space and usually, when my arm catches on something, it means I need to increase the space between me and foreign object. There’s no foreign object. It’s just more of me. Weird.

I had a sway in my lower  back which I managed to straighten out awhile ago. Better spinal posture means less pain overall. So now I have a substantial, unstable weight hanging in front of my spine, which means I have to work my abdominal muscles really hard to pull it closer to my center of gravity so I can just stay in balance.

My abs are killing me. If I don’t use them, my lower back hurts me worse, so those abs are constantly on duty.

I give them a break and relax them when I sit down — and it’s like being on top of a balloon that inflates, as my stomach takes over the lower horizon.

balloons-innflating

I poke it curiously, wondering how far down I have to go to find the original outline. I give up at the second knuckle. Too discouraging.

When I sit in my car, my right hip brushes against the driver’s armrest.¬† First thought: I’m over too far to the right; my hip shouldn’t be near that. Wrong. I’m dead center. It’s my hip that has travelled far.

But there is an up-side. When I fold my hands together, I have a perfect armrest. Soooo comfortable. It’s like it was made for me!

And the stares I used to get — or rather, that my endocrine-disrupted DDD cups used to get? Gone. No wolf-whistles or dribble on the sidewalk from creepy slimebuckets who seem to think I should be delighted at their lack of self-command. Nobody’s goosed me or grabbed a feel in ages!

It’s very peaceful. Makes it a lot easier to feel at home in my own skin, not to be bracing for the next random¬†invasion of privacy.

I’m no longer constantly holding a sharp elbow at the ready, to fend off some suddenly-clumsy dude who goggles briefly,¬†with a word-balloon appearing above his head that says “are those real?”, then¬†says “oops” and bumps into my pneumatic (and sensitive) form as if by mistake. I got so freakin’ tired of that!

Perhaps a leather vest with spikes all around…

myvest_front_med

This, incidentally, is why so many women feel  comforted wearing a burka. It makes the wearer more sexually invisible and insulates her from much of this random predatory crap.

My fleshly burka. Take that, right-wing-nuts — of any religion. You don’t even WANT to control this.

And, in a huge relief to my CRPS-riddled body, nobody wants to slam into it now, either. Yesssss!

I’ve got to get that vest. I can’t, and don’t want to, keep the fleshly burka, but I have to find a way to manage the body-slams. Never again.

As for food… Here’s what I’ve learned for the current incarnation of CRPS endocrine/digestive¬†ballyhoo:

– No grains of any kind. No lentils or beans.
– No dairy, except small amounts of hard cheese — the protein sufficiently altered that I can handle it in small doses.
– No sugar at all, but more unrefined stevia.
– I’ll have to get kefir “grains” and make my own water-kefir. I have some ideas for that.

I still have most of the world of nontoxic produce, nuts, and meat from healthy animals to sit down to. There are worse things… It isn’t cheap, but I’m learning where to shop. And it sure tastes good.

P.S. You want what?? Measurements, weight, photographs? They miss the point. I’m not looking at me, I’m looking from me.

I’m not comparing myself to anyone or anything. This is simply the view from inside. Hope it’s worth a laugh or two ūüôā

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Recipe: Even Brain Food Shakes evolve

As my digestion has gotten more frail, I’ve had more and more trouble with my Brain Food shake.
 
I went to a powder, because organic kale was hard to find and unwieldy,¬† and the nonorganic kind smells like a chemist’s armpit. And was still unwieldy.
 
But those shakes still hit my stomach like a cannonball.
 
J listened to me complain for the second day in a row and said, “Don’t eat fruits and vegetables together. Of course it’s impossible to digest.”
 
I stared at him a moment. “I used to know that,” I said with chagrin.
 
That was over a month ago and I think I’ve finally figured out how to make the greens taste like something other than pond.
 
So here are the current incarnations of my Brain Food Shakes, the simplest way to get maximum nutrition with minimal effort:
 
Morning Shake:
 
– 1/4¬†pound Trader Joe’s frozen Wild Boreal Blueberries (high anthocyanins, low toxins)
– heaping soupspoon almond butter (good oil, protein, minerals) (TJ’s is cheapest)
– Cal-mag supplement (for nerve transmission, teeth and bones; 1 tablespn Lifetime brand, blueberry flavor)
– 1/8 tsp clove powder (massive antioxidants, calms nerve pain, and I love clove)
– ~3 oz apple juice concentrate (malic acid helps clear cellular detritus)
– stevia (stabilizes blood sugar, cuts any lingering bitterness)
 
Whizz it until the flakes of blueberry skin are more or less uniform and quite small.
 
I’ve recently added:
 
– fat pinch of schizandra berries (massive antioxidants, seems to stabilize neurotransmitter behavior; whole berries take extra time in the blender)
– lecithin (improves digestibility and oil uptake)
 
Once everything’s whizzed down smooth, I add at the last minute:
 
– 1/2-3/4 cup blueberry kefir (I really like Lifeway brand, blueberry or plain)
 
The point of blenderizing is to chop open those cells so the nutrition is easy to get to, but with kefir or yogurt, the cells only work if they’re intact. So I whizz in kefir just until blended, maybe 2 seconds.
 
I mix in blackberries and fresh local berries when I can. On the road, I use dried currants, which are an overlooked “antioxidant powerhouse”, in modern marketing lingo. They can make the sweetness overwhelming, though.
 
This afternoon (fruit is more appropriate in the morning, veg in the afternoon) I tried something like this:
 
Afternoon Shake:
 
– Vegetable juice (TJ’s Garden Patch, but I’m open to suggestions)
– Scoop of green powder (I get distinct results from Garden of Life brand Perfect Food Raw; brain really perks up)
– 1/4-1/2 an avocado (cleans up blood vessels, great oil)
– 2 handfuls chopped kale (most nutritious veg per calorie; thanks to TJ’s for taking the work out of prepping organic kale)
Р1 handful sliced cabbage (sulfur for brain, glutathione precursor; also, does something magical to the kale so it tastes smooth and mild)
– salt (reduces ANS/POTS symptoms of dizziness and wonky bp)
– lecithin
– 1-2 individual grains of Epsom salt, a.k.a. magnesium sulfate (sulfur for the brain, magnesium for nerve transmission and electrolyte balance)
– water enough to make it go
 
Has a wonderfully fresh, pleasingly grownup flavor. A bit of cilantro, onion and lemon, and you could call it gazpacho.
 
I’m considering a pinch of curry powder, for the antiinflammatory circumin and that wonderful taste. It doesn’t need it, but it could add a bit of variety.¬†
 
I’ve often said that it HAS to taste good, or I won’t be able to keep doing it. And, since I test regularly (that is, try to do without), I know I have to keep doing it.
 
And as long as it tastes this good, I’m happy to do so.
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Your normal is my catatonic

On top of my careful eating and constant self-policing… I’ve cut my online time to the bone, to conserve neurotransmitters and wear and tear on my telomeres.
 
I’m moving to a sunnier flat, to improve vitamin D uptake and exposure to¬†beneficial UV bands.
 
I’ve gotten a cat, to lower my bp and help stabilize my diurnal cycle. (They get stirred up and worried when you stay up past your bedtime. It’s the cutest form of nagging ever.)
 
I’m doing my autogenic exercises as often as I can bear to, to bring my baseline level of overdrive down and begin to approach “normal”.
 
For better or worse, I’m getting more closely in touch with what a “normal” state of relaxation really feels like — and realizing how far from “normal” it is for me.
 
If I am as close to “normally” relaxed (or “normally” tense — its the same thing) as I can get, I’m nonfunctional.
 
All I can do is lie there, bathed in the peaceful antitoxins of adequate tissue perfusion and a still mind. Getting up requires dropping that calm, because there just isn’t enough energy there.
 
I’m far, far too tired to function as a normal person. My very cells are tired — I can feel it when I let down this chemical structure of overdrive and tension. Their very organelles are tired. The vacuoles, I bet, are tired.
 
Why? I mean, weariness is all very well,¬† but isn’t this a little ridiculous?
 
Ridiculous it may be, but not irrational or inappropriate. Here’s why, as far as I’ve thought it through.
 
– For one thing, pain is exhausting. An hour of pain is as wearying as an hour of running, but without the cardiovascular benefit or endorphins. Quite the opposite. And it never really stops.
 
– Moving the body with degraded muscles is hard work.
 
– Making decisions and doing the business of life (rent, bills, laundry, shopping) with a brain that flickers on and off… requires a lot of repeated trips and extra effort — also tiring.
 
– Remember that list of JCAHO-rated crises I mentioned on my last post? That was a sample from the latest in a series of years, each of which was about as harrowingly difficult, in different ways. Truly, I had no idea that so many ghastly things, most far too protracted for Hollywood to use in even their most grueling work, could grind through one measly life.
 
So maybe I should give my weariness some credit. Maybe I should stop bitching about how I just can’t get things done. Now that I’m trying to ratchet my ANS responses down from the stratosphere, maybe I shouldn’t wonder that it’s becoming hellishly difficult to get off the couch most of the time.
Maybe I should stop obsessing on my characteristic need to be productive.
 
Maybe it’s finally time to stop ignoring the fact that I’m really damn TIRED, and put my attention on getting more rest.
 
That might be the most productive thing I could do.
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Changing the glass, resetting limits

I have to resurrect a set of rules I thought I’d gotten past:
 
– No internet before noon.
– No more than 2 hours daily for all internet activity: email, FaceBook, Twitter, research, posting and illustrating blogs.
– This includes surfing on the phone.
 
I will be moving upstairs to a brighter apartment that’s arranged better for two. J still plans to move in come September, so I’m grabbing the opportunity while it’s there.
 
For the past several months I’ve been learning to notice and deal constructively with signals from body and brain. Part of the reality of this is, there’s a ton of backlog to sort out.
 
This is significant, partly due to CRPS and partly to the nature of last year, which was an ongoing festival of upheaval:
 
– Got SSDI.
– Had to save life of same friend twice in three months.
– Sold my boat/home.
– Moved 3 times.
– Travelled for 6 months at a stretch.
– Started an important romantic relationship.
– Had 2 serious threats hanging over my own life.
 
It’s not good for the ANS, all this excitement.¬† I’m not personally opposed to eventfulness, it’s just really hard on my regulatory systems. Given similar situations, I’d probably have to do similar things, but it’s time to chill the h#11 out now.
 
I’m moving and it makes my lizard brain howl — if lizards can howl.
 
I’m moving upstairs,¬† not far at all. And it’ll be safer — you can’t even find it from the road. It’ll be brighter and quieter. The paint scheme is far more cheery and pleasant.
 
But I’m moving, and at some level, that’s an absolute… That is, an absolute brain-fogging mess of suppressed fight-or-flight response and irrational despair. It’s seriously altering how well and how long I can think… changing the water level in my current glass, so to speak.
 
Packing my few things is not a physically imposing task,  but moving at all is a brain-crippling one, apparently.
 
I still have to maintain my care schedule, keep appointments and stay caught up (-ish) on laundry and groceries, none of which is optional.
 
When my adrenals are under stress, my brain gets quickly exhausted, especially in the morning. According to my old acupuncturist, that’s a classic diagnostic indicator. Cognition is linked to adrenal function, he says.
 
The thing to do is go with it, and not make decisions or try to parse communications until the whole system has had a chance to wake up and get moving. Thoroughly.
 
So, out of respect for my brain’s needs, I’ll be spending my mornings playing with the kitten and catching up on my bookshelves, instead of being online.
 
Oh gee, isn’t that tough ūüôā
 
And when I’ve moved in and gotten the new place under control, with no intention of moving again until I’ve got a “forever home” to go to, I’ll find out just how resilient this brain really is and see what parameters make sense then.
 
Until then, the online world will go on with, at most, 2 hours a day of attention from me — for research, social networking, web page managing,¬† and posting & illustrating blogs.
 
We’ll manage just fine.
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Breathing

Sooner or later, it all comes back to breathing.

Without adequate breath, obviously, nothing else matters. As a sometime ER nurse and continuing asthmatic, I’m more than usually aware of that fact.

I mean something beyond that, though. Something more pervasive.

Breathing, like walking, is one of those things that I keep coming back to as an interesting study — one that’s so fundamental that I forget, in between times, exactly how deeply it changes everything else in life.

I first began meditating in my very early teens, after basic instruction from my mother:

1. Think of a simple, unemotional mental image, like a burning candle flame, and breathe.
2. As thoughts come and go, let them go (sometimes, especially at first, I had to chase them off) then…
3. Bring your attention back to the image and the breath.

The image didn’t do me much good ‚Äď I think fire is a little too emotional for me ‚Äď but simply being at home to my breath, and letting the haywire-ness of the day drift off into the mist… with my odd and beguiling little cat softly nestled against my leg under the covers… did me all the good in the world. Especially at 13.

The language of breath is interesting. Breath, spirit, life, and insight often share the same word or sounds in languages around the world. For instance, in English, “inspiration” means both a breath, and a sudden idea; the root word means spirit. There is no¬†divide between these ideas.


(Life, breath, spirit, ideas… how can these be separated? How can a life worth living, let alone a bearable life, let alone a pulse, exist without all of them?)

As I said, I’ve been breathing intentionally for decades. In my 20’s, I taught my ER and ICU patients a particular form of breathing which, I’d noticed, cut their pain response, lowered their blood pressure, and improved the level of oxygen in their blood — no matter what they came in with.

In 3 breaths the difference was noticeable, and if I could persuade them to take 10, we were halfway home.

It goes like this:

1. Breathe in through your nose.

2. Draw the breath all the way down into your lower abdomen.

3. Let it out through gently pursed lips, like softly blowing out a birthday candle.

4. Repeat.

The abdominal breathing improves lung expansion. The slight backpressure on the exhalation nudges extra oxygen into the system (the importance of oxygen can’t be overstated, especially in emergencies) and sends a gentle message to the blood-pressure sensors in the neck, telling them to lower pressure.

This kind of breathing activates the “calm down” part of the central nervous system, that is, the parasympathetic branch of the autonomic nervous system.

The extra oxygen helps clear some of the oxidative damage away.

It feels wonderful.

And it always works.

(Clinical note: for people with COPD, I did 2-3 breaths, and checked in. As with most adults with a chronic disease, they could generally be trusted to sense their limits and stop. Youngsters soon learn, though very few youngsters have COPD.)

Recently, I’ve learned a slightly different technique from the same psychologist I mentioned in¬†my last post…

1. Notice my breathing. That’s all. Let everything calm down for a bit.

2. Draw the breath into my abdomen.

3. Gradually increase the size of those abdominal breaths.

4. Let the midchest join in, getting still more air in. Exhale from the top down.

5. Eventually, let air into my abdomen, then midchest, then upper chest — inhaling from the bottom up. My lungs are pretty fully expanded in the inhale now, and I still exhale from the top down.

6. I tell myself: My arms are heavy and warm. Soon, they are.

7. I tell myself: My legs are heavy and warm. Soon, they are.

8. I tell myself: My lower abdomen is warm and relaxed. The whole bowl of my pelvis becomes a sea of lovely calm. (I had no idea how much standing tension was stored there, at the bottom of the spine and where all the exits are — though it makes sense, when I think about it…)

9. Then I stop contriving my breathing, and let it just flow.

After about 15 minutes, well, life is good. Really good. Talk about activating the parasympathetic nervous system.

I’ve forgotten what else I was going to say. I want to be that peaceful and warm right now.

Oh yeah. The point is this:

Breathing well makes everything better.

It shouldn’t be that simple, but it is.

Excuse me. My limbs need to be heavy and warm… In a good way.

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