Fragile Egg Syndrome


Chronic pain patients are often called Difficult Patients, when the casual cruelty and reflexive contempt of medicine and the ignorance of other people grates too hard against our increasingly impaired ability to compensate and deal with it as calmly and “rationally” as we used to.

I’m less and less certain that casual cruelty and reflexive contempt are rational to deal with. Really, the *rational* thing to do is draw the line when professionals behave badly, no matter what the profession.

I’m increasingly certain that those who provide care, and have gone to all that effort to be trained and licensed to do so, should probably take on the burden of acting with more kindness and courtesy than those who pursue less intensive interactions with the wounded, disabled, and ill. Not less courtesy. More.

The rational thing for the professional to do then is to reckon that requirement into the cost — because respectful and courteous patient interaction saves money and improves outcomes, but more/higher administrator salaries do not. The data on that are very clear… though strangely hard to dig out on the second point.

I sometimes mull the mindframe I had when I was working as a nurse, which was deeply compassionate without being cuddly or fluffy. I was well aware that only one person was paid to be in that room and adjusted my expectations accordingly. But still, I think of the casual disregard of others’ humanity that defines so much of health-professional behavior, and wonder at the culture that reflects. It’s not that we have to do degrading things like shove needles and hoses into people, it’s that we won’t let them wear real clothes or secure their electronics or even eat real food, when they’re in our hands. We no longer even warm the gel.

Anyway.

CRPS patients are a special category of chronic pain patients: we may be dealing with a level of pain consistently rated as higher and more intense, not to mention more constant, than anything else — including childbirth, most cancer, having fingers ripped off — with the sole exception of terminal cancer pain, which is at the top of the McGill Pain Index. It’s horrible but true that terminal cancer pain doesn’t last as long.

Colorful rendition of the McGill Pain Index, with many painful conditions listed, including Sprain near the bottom in the low teens, Chronic Back Pain in the middle, and CRPS up at 42-43.
Image thanks to Elle and the Auto Gnome

So, we are a distinct, and distinctive, subgroup of the Chronic Pain Patient set.

On top of that, of course, the brain remapping and the neurochemical disruption of longstanding CRPS means that our central nervous systems are absolutely hair-triggered for terror reactions, which transmute into all sorts of other things when our intellect has to wrestle with the terror… because screaming and fleeing blindly into traffic shedding broken bits of furniture and wallboard is, somehow, neither socially acceptable nor particularly useful.

My old pain doc, Dr. Richeimer at USC Keck Pain Center, has a wonderful term for those whom lesser physicians call Difficult Patients:

Fragile Eggs.

Isn’t that perfect? Easily broken, and when broken, extremely messy and hard to clean up after. Treat gently. Treat extremely gently. Understand that you may have a mess on your hands anyway. Keep your cool, adapt on the fly as the egg rolls around, and stay gentle. There’s really no other way to handle it.

(Like many others, I love that man.)

So here’s the thing.

At the end of a crappy week (thick with grief), I had a Pap test (painful, intrusive procedure which is easy to do badly) scheduled to check for cancer (which is frightening) because I had a blood test come up funny that can be a sign of gynecological cancer (so there’s grounding for the fear.) I know as well as anyone that these things mustn’t be delayed, but I waited an extra week in order to schedule a long appointment so that the test could be done in a rational, CRPS-friendly manner.

Silly me. Turns out a “long appointment” is 15 minutes. That’s not a typo. FIFTEEN MINUTES is a “long” appointment.

I really haven’t been keeping up with the downward slide of the health care field below the level of the best-of-the-best I’ve had out West. I’m speechless.

Did you know it takes 5-7 minutes just to say hello and catch up on the case with a complex patient? Do you know what it’s like to have a speculum inserted into a body that is one long scream of pain already, and the tiny, cheap, but essential steps it takes to make that a wise thing to do? Did you know that good practice for intrusive procedures, especially for those with PTSD around their bodies (which includes most women, frankly) is to meet the patient while they’re still clothed and have them undress for the invasion-fandango after they’ve had a chance to be human, and not just one long scream?

I know, it’s crazy to think that patients are human. Forget I said that. I don’t know what I was thinking! Pfft…

I told the office twit who roomed me and informed me that it was a 15-minute vist that a Pap smear on a CRPS body was not going to happen in 15 minutes. Twice. She set up the torture implements, which did not include Lidocaine gel or a warmer, in the cool office, and told me to get completely undressed and climb into the gown she laid on the exam table.

She didn’t mention that my provider, the one decent and rational entity in that department, was running very late. I had to find that out for myself.

Sitting in the cold room, staring at the torture tray laid out directly in front of me, still fully dressed because I could not succumb to being led like a lamb to slaughter, I tried to calm myself, to get my brain out of the state of being hijacked by terror at the casual cruelty of being tortured into spreading this hideous disease into my viscera, and helpless rage at this high-handed and disrespectful way of being treated.

I tried to reflect that, clearly, a lot of women who came to this office for care put up with it and, knowing New Englanders, never even thought of complaining because that would be a sign of weakness.

I tried to tell myself that my provider would surely rinse the speculum in hot water before using it, but that thought was booted immediately. I know from prior experience as a healthy person that a plastic speculum does not hold the warmth, but it does hold drops of water as they cool off quickly, and the temperature of that object does not affect the temperature of the 60-degree gel they put on it.

So, viciously cold thing going into my CRPS-y body’s core. Then that pinching, twisting jolt as it snaps open in mucous membranes which are wired straight into my central nervous system as well as my visceral cavity. During a weather- and trauma-induced flare.

There’s just no way that can go well.

I sat there for half an hour, trying not to stare at the torture implements although they were unavoidable in that tiny space, feeling my brain run circles around itself, trying not to scream, feeling my capacity for verbalization and rationality bleed away in the chill.

I realized that, although I wanted to connect with my provider and use the time profitably at least in discussing these problems and finding out my ultrasound results, I couldn’t sit there any longer. I needed forward momentum if I was going to come out of this intact.

So I spent the next 8 minutes writing my provider a letter, left it on top of the Patient Update document I had brought in (which mentioned my prior interactions with the staff, ALL of which had been record-setting-ly stupid and unproductive), and I left.

I did NOT run screaming into traffic. I didn’t break anything on my way out. I politely commanded the twit to copy my letter “now please”, stood over her while she did it, laid the paperwork I’d created for my provider in a neat pile on her table, and kept my copy for my records.

Then I quietly walked out, smiling politely at my provider as I passed her in the hallway heading towards the nurse’s desk.

I made very little mess, for a fragile egg.

I got my documentation, but forgot my purse. There’s something very Isy about that. (I’ll go collect it next business day, and hopefully that will be the last time I have to see them.)

So, this weekend, I have to do 2 things: find a gynecologist equipped to handle complex patients, and put together my own gyn exam kit — with a suitable implement, lidocaine gel, and heating pads.

Sometimes, BYO* is the only way to go.

I may be a fragile egg at times, but I don’t like it and I don’t intend to live there. I can’t control the industry, but I can control what I walk into the room with.

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*Note for non-native English readers: BYO is for Bring Your Own. BYO is derived from BYOB, which means Bring Your Own Beer/Booze, normally used in regard to parties (obviously!) BYO moved into common usage on its own as a handy verbal shortcut; it’s still informal, but not nearly as informal as BYOB 🙂

♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦♦
UPDATE from early March

I got my own speculum, the Pederson type (which is a bit narrower); found food-grade silicon sealant (which smells strongly of vinegar, but nothing more toxic) and applied it over all the contact surfaces and where the edges meet; and prepared a bottle of pain-reducing Emu oil with a bit of nerve-pain-reducing Clove essential oil added.

I called the largest and oldest gynecological practice in the area, and asked for the doctor with the lightest touch. I was a bit disturbed when a large, fit, square-jawed, brush-cut fellow walked in, but he turned out to be an angel. He was happy to use my speculum, poured quantities of my pain-reducing oil over that and his hands, and gave me a break halfway through the procedure to sit up, get my pain/panic response under control, and pull myself into reality and out of the shocky place.

I’m sorry to say that the Pap test itself was a lot like having burning coals shoveled into me and pushed around, so yeah, there is definitely some nervous system remapping that has already happened to my insides. (It used to be an unpleasant little scratching sensation, and no more.)

This doctor wisely asked for a copy of the funky test, which was my serum DHEAS level. I went to my other doctor’s and got copies and ran them over myself. I took a look…

The doctor who’s substituting for my allergy/immunity doctor who ordered this test dropped a very serious brick. THE TEST HE REFERRED TO WAS JUST FINE. I do NOT have an abnormal DHEAS value. It’s a whole lot more normal than the rest of me!

I wrote the gynecologist a note on the back to that effect, and let him know that he did the lightest, best possible job under the circumstances and that I’m grateful. He looked absolutely white and shocky by the time he left the room, so I think it was a pretty horrible experience for him too, and I don’t want to scare him off of treating other pain patients.

I got a Pap test out of the way and learned something important about the state of my disease. I’m being more diligent about my multivitamins and SAMe, the methionine-based antioxidant I use as my main antioxidant supplementation besides vitamins. I’m researching the least nutty, most promising pain centers near me, at Yale and Brown Universities (Dr. Pradeep Chopra is at Brown, so that’s probably first on the list) and this week I’ll be making appointments.

I guess every setback is really a redirection or a kick in the pants for me. I may have CRPS in my viscera (which would explain a few things) but I needed to get my act together about getting a pain doc anyway. My DHEA test was normal, phew, but I’ve been harshly reminded to double-check everything the doctor says. I’m seeing my usual doc at that practice soon, and I’m going to ask him to double-check DHEAS results to see if any patient has been left uninformed and unfollowed-up.

I took a few days after the Pap test to simply refuse to think about it, because I did NOT want THOSE pathways to go any deeper into my impressionable brain! Took it easy, watched and read silly things, ran errands with J, took loads of vitamins and drank plenty of water… then started researching the pain doctors.

This is my policy… strategic withdrawal if necessary, yes; pause, rest, reboot, definitely; but in the end, “Never give up! Never surrender!”

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6 Replies to “Fragile Egg Syndrome”

  1. Good for you for walking out with your dignity intact!

    I am so sick of medical professionals either disregarding my RSD as it effects other medical conditions and how they treat me or just being ignorant of RSD in general. I am just now coming out of about a 2mo nightmare with my gallbladder and almost the whole time medical professionals ignored/disregarded the fact that the gallbladder attacks and then later the surgery also affected my RSD pain. So, my pain, gallbladder and RSD has not been well controlled this whole time. I went in for my post op appt yesterday and I am telling the Dr how terrible I am doing, how much extra time my husband has had to take off work to take care of me, etc…. I felt like death warmed over at the appt and she even commented on how bad I looked. Then turns around and says “I think you are healing normally. You just need to not focus so much on the pain so much.” The day before my shrink and I spent the whole session talking about how I was going to ask for better pain management because he felt that I wasn’t getting good pain management and he knows I don’t ask for it due to being treated terribly in the past. When she said that to me, I was done. I knew what kind of Dr she was and I wasn’t going to get pain management for my post op pain from her.

  2. This is a spot on article.I have CRPS .I have had it for nearly 11 years.I had to live with off and on upper gastric pain for the past 5 years.It started with being nauseous frequently I have been in the ER twice for the pain.A kindly ER Dr. believed me and pushed my primary Dr. to send me to a GI Dr. .Turns out I have chronic gastritis with a polyp.May or may not be due to my CRPS.I get tired of all my symptoms being tried as not real or related to my chronic pain and being overweight. No one in the hospital closest to me knows anything about CRPS even though I beg them to do an inservice.

    1. There’s a FaceBook page that has a postcard you can print out that has a QR link right to a great science article on CRPS as a multi-system disease and spends a fair amount of time the gi system. If you like, you could look up the GPs, neuros, pain docs, etc., print it out on cardstock, and send it to them. It costs in postage, but it could pay off in care and interest. It creates buzz, as it’s a stunning visual, and the article is one of my absolute go-to favorites.

      I can’t link to the images directly, so I put them on a page here:
      http://livinganyway.com/wp/easy-peasy-doctor-education-tool/

  3. Oh my dear. So sorry that you’ve had yet another crap medical experience to add to the pile. And from one egg to another; My! You showed remarkable self restraint and fortitude! Well written as usual. xo 🙁

  4. DAMN!!! I mean… Holy fuckety fuck, Isy! I’m HORRIFIED at the appalling treatment you received and even more so that it’s not the first time… :'(

    But Go, YOU for not taking it! Wtf Is UP with a cold exam room in a GYN OFFICE?! EFF ME. My drs exam rooms are always on the toasty side – have to take coats off warm – because they want folks to not freeze! My last Dr, too – and they’re both GPs, no less.

    Last Pap I had I went to our local sexual health centre – roughly like your PPs. I’ve never needed to but first went when I was looking for a new Dr. Since they do pelvics and STI testing all day, they’re exceptionally good at them (staffed by Drs who want to be there due to interests in seeing the younger population that they mostly serve).

    Anyhoo, I briefly told the Dr about CRPS and she’d heard of it! Whoo! Then said was worried about stirrups, asked for ideas. We used my pants to fully pad the stirrup and she was very careful with me. Thankful.

    But me, the former every year, on time getter of exams hasn’t gone in too long, though they’ve now determined those with normal results for a few years can go every 3 years for their next exam. But now my hip/s are jacked,I’m having lower back and other not yet Dx’d issues – frankly I’m kinda scared.

    I can’t imagine having one done if my insides were… Dear gawds, NO.

    You are one hella strong warrior woman!!! Wish like hell you didn’t need to be.

    Wish like hell. xx <3

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