day 10

We gave up on taking things day by day. Just going to plan the next hour.

 

to good finds:

https://painreframedpodcast.libsyn.com/69-pain-catastrophizing-dr-beth-darnall

https://painreframedpodcast.libsyn.com/74-non-pharmacological-management-is-the-first-step-megan-doyle

 

it’s an exciting time to be in pain. The opiod crisis means there is more attention being paid to all sorts of pain and treating it without drugs.

 

also, new iPhones seem to help with pain management, but we can’t do that everyday.

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day 7

it has been a week.

We have lived a thousand lifetimes in 7 days.

Today we cried when we heard back from Psych.

 

Hold it together

Ugly cry in the bathroom

Put on the face that you keep in the jar by the door

Eat half a jar of jam with a spoon

Be there

repeat

 

We spent 45 minutes reading showerthoughts to keep the pain away

 

Many signs are encouraging: When distracted, many things are possible.

Some signs are not encouraging: Lack of sensitivity in her left pinky finger.

 

Learned nothing new today. It was a day of action, phone calls and list checking and another day of filling out intake forms.

Was that Day 5? I think it might have been.

We’re starting to lose track of days. But it’s feeling like we’re making progress. We have two pain clinics identified as possible places to go for treatment. We’ve also made a lot of progress on identifying the psychological aspects at play. They seem to be key triggers for problems.

Had an MRI today (to rule out underlying physical things, not to diagnose CRPS)

We see PT tomorrow

On day 4, we wandered the grocery store aimlessly grabbing food from shelves when ti felt right.

Two great finds:

 

Day 3

Approach:

  • Hold it together
  • Ugly cry in the bathroom
  • Work the problem (made an enormous white board map of everything)
  • Repeat

Finds:

 

Tonight’s plan

The plan was to write some more about the second day. But self care is important. This is a marathon, not a sprint. I. Slept 2 hours last night🛄 Good nights

UPDATE: CRPS appears to have a cruel sense of humor. 45 minutes after this post, we were up with spasms and shooting pain. 4 hours after that, in the emergency room.

Day 2 [Rolling updates]

[Worth a shot] Mirror therapy:
https://www.nejm.org/doi/full/10.1056/nejmc0902799

Best description of CRPS I’ve found yet. Clear and concise description, which paints a picture of the body learning to be in pain, rather than the body learning to be well.

http://podbay.fm/show/259716343/e/1265131119?autostart=1

also: look into Dr. Robert J. Schwartzman. He proposes an interesting/controversial idea: All Fibromyalgia is a form of CRPS. http://drexelmedicine.org/find-a-doctor/s/robert-schwartzman-j/

Podcast soft recommendation: not great, but has some good background on PT for CRPS

 

personal story/blog:

http://miracles4michele.com/

 

lecture

 

the good people of Reddit are amazing resources.

this app looks good:

https://www.curablehealth.com/clara

 

good podcast on the origins on pain

https://itunes.apple.com/us/podcast/like-mind-like-body/id1265323809?mt=2#

 

The first twelve hours

Some words hang in the air when your doctor says them. Words like biopsy, fracture, or non-viable. Those words have meaning when you hear them. They take on a life of their own because you know the bad news is coming next. It’s like thunder and lightning, the flash that shocks you awake, then the punch in the gut.

Other words are just words though. They are not presences. They don’t hit you in the chest, they don’t take away your breath. They just wash over as part of everything else that is expected.

So when the dr. said Complex Regional Pain Syndrome today, it didn’t sound like much. I’ve had syndromes before, but they’ve cleared up. When you wash those words away and replace them with letters CRPS they lose even more of the weight they may deserve. Then the words got scrambled again by the Dr. coming out as Chronic Regional Pain Syndrome.

It’s been 12 hours since my teenage daughter got her diagnosis. It’s not confirmed yet though and we still need to rule some out some other things. But one thing has become absolutely clear: (Lesson 1) Medicine is an ongoing process to understand and help people. But CRPS is not yet clearly understood, which makes it difficult to help people.

So when the Dr. had some clues, but not clear answers, it was a little disconcerting. But that’s where we seem to be. And when I say “We”, I mean all of us. Everybody.

I’m not a doctor or an astronaut, so I’m not going to pull a Mark Watney and “Science the shit of out this.” But what I can do is internet the shit out of this and guide you through everything that’s out there. Why makes me qualified to be your guide? Don’t worry, I’m not qualified. I’m just trying to leave breadcrumbs for myself and maybe somebody else will find them too.

(Lesson 2) Google is your friend. Instagram is your enemy.

Instagram will only show you the worst outcomes. Example: https://www.instagram.com/thegoodleg/ https://www.instagram.com/burningnightscrps/ the people who’s lives have been fundamentally altered by CRPS. What you won’t easily find there are the people who recovered and now manage a chronic condition.  Don’t start with anything on Instagram. That will come in time. Today is not that day.

Reddit is… https://www.reddit.com/r/CRPS/ well I don’t know yet. Gotta check it out.

(Lesson 3) In early days, move quickly: Synthesized from links below.

  • Start Gabapentin
  • Take vitamin C
  • Get a unicorn physical therapist lined up quickly

This is the first day, so here is scattershot capture of what I’ve found useful, or what to look into some more:

Good background (warning: containts dr. talk) on what your dr. doesn’t completely understand: https://player.fm/series/the-pmr-podcast/episode-18-complex-regional-pain-syndrome

FAQs & Background:

Inspiration/personal stories:

Questions:

Things to learn about more tomorrow:

 

Good company in a journey makes the way seem shorter. — Izaak Walton

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