There’s always an afterwards

When I was a nurse, I could see when death was creeping up on someone. I saw gray fluttering around the person’s edges, especially around the head and upper body. As they recovered, the fluttering grew narrower and disappeared; as they lost ground, it grew wider, sometimes growing too wide to see.

Rear view of sturdy stone angel inside a lovel stone church

When that happened, I made sure I could find the code cart, because we were going to need it.

I worked and fought like hell to shrink that fluttering, to get each person closer to life.

Not every life can be saved. There’s a dislocating moment when, after working with several others to try to revive someone, it sinks in upon all of you – neaerly simultaneously – that it’s a lost cause, and then the doctor calls the code.

Everyone steps back for a moment, same expression on their faces: eyebrows up, eyes on the erstwhile patient, mouth slightly open, every brain running through the scenario and looking for something left undone (never has been, on my teams)… pausing in the shock of rebooting.

When I was coding someone, that person was the most important thing in my world, and all of my training and experience and physical capacity was tightly woven into my determination to get them back. When I had to stop coding them, all of that intense focus, activity, and energy had to come to a screeching halt, be re-assimilated back into my reserve, and clear the way for the next set of tasks. Not a trivial job.

Multiply  that by the number of professionals in the room, and you see why there’s always a breathless pause, even in the most practiced ER.

Then we get back to work, but it’s the work of cleaning up, restocking supplies and meds, prepping the body for the morgue/organ harvesting, and clearing the way for the next incident — a gunshot wound, a bloody nose, a beaten child, a drama queen or king; could be anything.

This explains a lot about ER staff: whatever happens, however we feel about it, we have to clear it away, clean up, restock, and be ready for the most trivial or the most harrowing issues to come in that door next — with little or no warning. Then deal with that, sometimes by brutal means (which you’d understand if you ever saw a chest tube placed or helped set bones for someone who’s been beaten.) Then go home, get food down and go to sleep, and be ready to  come in the next day and do it all over again. Day after day after week after year.

Imagine what that takes.

No wonder they often seem a bit detached, a bit harsh, a bit clueless about the human impact of what they do. They have to come back to that every working day, and try to stay above the madness.

Bosch_painting_of_Hell_(582x800)

The very day I realized I’d forgotten the human impact, was the day I knew I had to change careers. No wonder my immune system was failing. The effort to protect myself was killing me.

My dad’s death was unexpected, and happened overseas. It happened shortly after I knew I’d have to change careers, and shortly before I gave notice and surrendered my RN licensure.

I don’t think I’ll talk about it much, except to pass on the best advice I ever got about survival:

Take every opportunity to be happy, because it makes you stronger for the other times.

Less than a year later, one of my dearest friends died suddenly, back East… After that, I lost someone I loved every month or two, for just over a year… and somewhere in the middle of that, my relationship fell apart.

Hellish, tragic and harrowing as that period of time was, it turned out to be training wheels for being disabled with CRPS and all that comes with that.

It’s no wonder I have some of the symptoms of someone in an abusive relationship. I am; it’s called Life.

me-fingers-2up
And that’s what I say about it.

I’ve seen the grey fluttering around myself more often than I’d care to say. I’ve wrestled with the desperate temptation to end this brutal, chaotic nonsense for myself.

Angels_lossy_notsonice

My own intransigence saves me; no stupid disease gets to win. The very thought is intolerable. Not gonna let it happen.

US Navy: Marines of the embarked 15th Marine Expeditionary Unit practice hand-to-hand combat
I identify with both. They’re working their butts off and there’s no telling who’ll win… but neither one will cry uncle.

I’ve had to tell myself, sometimes every few seconds, “Keep breathing. This will pass. There is an afterwards. Just stay alive long enough to see it. There is an afterwards. Let’s find out what it’ll be like. Keep breathing. This will pass.”

Verbatim.

And, eventually, times like this morning come, which thaw those unspeakable memories on the warm stove of peace…

Gentle air from a misty morning caresses my mouth. Happy morning voices trickle in from the neighbors. My tea tastes just right. The birds are screaming their fool heads off in the greenery. My feline ray  of sunshine can’t stop moving for the sheer glee of being alive.

Ari-squirming

It’s simple, but it’s perfect.

I find myself glancing back at the shadows behind me, giving them a nod.

I was right. There is always an afterwards.

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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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Is losing our minds to “pain brain” optional?

64% of CRPSers experience significant cognitive decline. Speaking as a member of that majority, I think that sucks. Most people with chronic pain find that they experience the following:

– Confusion: it’s harder to keep track of things like we used to.

– Forgetfulness: forget the car keys? We’re capable of forgetting the car. It’s more than a touch of early onset Oldtimer’s.

– Distractability: I got up in the middle of a sentence when my meditation exercise was playing. I forgot what I was doing netween one syllable and the next and I could NOT make myself lie down again.

– Locked focus: once I do get into something, it can be impossible to tear myself away, even if I need to move or stretch or calm a racing heart. It’s *weird.*

– Memory: Forgetting the car? Sometimes I forget my birthplace. There are random, shifting holes in my long-term memory that I can’t do anything about, except waffle and flannel until the subject changes. Learning anything new that isn’t related to CRPS or writing (which my brain seems to have anchored with industrial grade mooring chains, so far) is pretty much doomed.

– Intense, driving feelings: catch me on a bad pain day and discover a new word for female dog, and it’s not because I want to be like that, but my internal brakes are off and everything feels like the emotional equivalent of flashing neon.

– Oversimplifying/black-and-white thinking: this was one of the first issues we addressed in my functional restoration class all those years ago. Without constant checking, chronic pain makes everything MUCH more intense, and maintaining middle gears is a constant job.

– Poor sleep. Trouble waking up. No duh.

 

Now, just for grins, let’s look at the list of symptoms for AD/HD:

– Difficulty tracking complex ideas/confusion

– Forgetfulness.

– Distractability.

– Locked focus.

– Memory issues.

– Intense, driving feelings.

– Oversimplifying/black-and-white thinking.

– Poor sleep. Trouble waking up. Hel-lo!

 

Is it just me, or is there a wee bit of overlap here?

 

Classically, ADD (or ADHD, or AD(optionalH)D) is not considered an aquired disease. However, I noticed that the parts of the brain that ARE distorted in ADD are some of the same parts of the brain that GET distorted in CRPS — and perhaps in other types of chronic pain.

 

We aren’t making these symptons up. We struggle mightily to keep our symptoms under some kind of control, but the worse this particular family of symptoms gets, the closer it gets to impossible to keep it under control.

 

Fortunately, ADD (et alia) has been treated successfully for years. The meds used overlap with meds used for neuropathic pain, depression and dysautonomia (because it’s all about regulated nerve signaling); the techniques overlap with the techniques for handling CRPS, dysautonomia and chronic pain (see my last two posts); and the therapy follow-up ties into the fact that ongoing counselling is part of the gold standard of treatment for CRPS, and darn well should be for chronic pain.

 

This is solvable. Let’s get our brains back, because life is too short for this to be allowed to continue.

 

When I get my scientific studies lined up, I’ll rewrite this for my bioscience blog. Feel free to take it to your doctor.

 

We can do this.

 

Meanwhile, borrow a couple of books like “you mean I’m not lazy, stupid or crazy?” and “delivered from distraction”, and see if it doesn’t take a load off your mind to recognize that there IS a way forward.

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Anagrams and T-shirt designs for the irreverent

This started when someone posted a t-shirt design that said, “RSD: Really Sucky Disease.” (RSD is the old name for CRPS.) I thought that was a wonderful way to recast it, and a good conversation starter. So that got me going on CRPS.

Enjoy — and please, feel free to add more…

Complex,
Ridiculously
Pathological
Situation

Complete
Range of
Painful
Sh!t

Craving
Really
Priceless
Science
(that’s a thinly-disguised commentary on how profitable it is to treat CRPS)

Curative
Routines
Pressingly
Sought

I could go on, but I won’t… I’m looking forward to seeing what others come up with.

What would you wear? And what style of shirt would you like to wear it in?

Here’s another idea I had:

Pale blue women's T-shirt with "C.R.P.S.: like craps without the A", and the A is painted on half a pair of dice.
Text: C.R.P.S. like CRAPS without the A.

In one version, the back says, “Complex Regional Pain Syndrome: It’s weird. It’s random. It’s harsh. IT’S REAL.”

But that’s a little discouraging.

I’ll work on it.

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