I had to split this off into a separate post, going more personal than the last docsplaining one. (And then stuck it in the mothballs for several days, because uncomfortably personal.) Which may have sounded a bit harsh, but sometimes that is appropriate.
All that said, my own situation has become untenable, and I have been agonizing (ha!) about trying to find another GP and hopefully some kind of help which is actually helpful. I’ve been thinking about it for a good while now, and am still pretty well stumped as to how to make sure I get treated with some dignity and respect, while dealing with hearing/c0mmunication problems and PTSD reactions that make effective self-advocacy difficult. Mr. U is also buffaloed by health care situations, and even though I have explained to him what kind of help I think I need in order not to get bulldozed, it feels unfair to him–and I’m not totally sure he can handle doing interpretation and advocacy in a situation that also freaks him out.
My own brain fog and easily getting overloaded, from the health problems I need help with, also make speaking up for myself much more difficult. (A persistent problem when I’m sick or in pain, yeah.)
But, yeah. My coping skills are running on fumes, and my health situation is looking unlikely to improve on its own.
I’m trying to ease into eating fewer carbs, to try to manage my blood sugar without getting seriously triggered by food restriction, but that’s needing to go pretty slowly. (Probably more on that coming.) Some other appropriate treatment to get my glucose levels running lower would no doubt help me feel better overall. I’m afraid they’ll just try to put me right back on the metformin that had me barely able to go out of the house and with more malabsorption problems someone with celiac doesn’t need, because it’s the cheap first-line option. (It also didn’t lower my glucose levels, just made me very sick for the whole almost a year before I finally went off it on my own, and helped crash my health from the malabsorption.) But, maybe I can find someone who will listen better than the last “diabetes guy” GP who kept brushing off some really bad side effects and wouldn’t try me on anything else because it’s a “good drug”. Apparently making anyone who doesn’t do well on it a bad patient, yeah, and that’s not the first time I’ve run into that; my mom actually wound up in the hospital with signs of kidney and liver failure over a couple of “good drugs” like that.
The thing that’s been hardest to deal with lately, though, is the broken sacrum. Yep, that is still a problem. It will partly heal up, then it will get reinjured and displaced in some way, but the pain is always there and makes it hard to even think straight. The relentlessness is maybe the worst part. I am just about at the end of my rope, after the last “it had several months to partly heal, then I started cramping through the hormones intended to prevent that, and it felt like a fresh fracture again!” episode. There’s always something, but it’s somehow more frustrating when your body starts ganging up on itself.
Unfortunately, sacral insufficiency fractures are often an unsuspected and undiagnosed cause of low back pain in elderly women. It was not until 1982 that they were described by a physician named Lourie.
Symptoms can include severe pain in the buttock, back, hip, groin, and/or pelvis. If the pubic ramus has fractured, there may be pain in the front of the pelvis. Walking is typically slow and painful. It can be difficult to do other necessary activities. Your back or pelvis maybe tender to touch. You may find that you have limited range of motion of your low back…
Sacroplasty may be considered in those with a severe decrease in functional ability and quality of life. It may provide faster relief of pain than typical conservative care.#
(Bolding added.) That is certainly one way of putting it. There is no comfortable position, and basically nothing you can do without disturbing a broken pelvis (including lying in bed). I have been having trouble with doing much, and hurting myself trying to do it anyway, within a seriously decreased activity level. I’ve been having trouble with things as “simple” as showering as often as I would like to, much less simple things like standing up and cooking, or going grocery shopping. (You can forget relaxing walks, much less bike rides, which is a serious quality of life problem for me and also doesn’t do much for glucose control.) The pain itself screws with my glucose control. Luckily, my fracture does not seem to have caused any nerve impingement or damage, but it still ain’t comfy, and I am also having more trouble getting out because so many resources are taken up dealing with the pain that I get more easily overloaded.
What kind of pain are we talking about, when they consider sacroplasty?
Median activity pain scores collected from 13 patients decreased from 10 (IQR 8.5–10) pre-procedure to 6 (IQR 4–6.8) post-procedure (p<0.0001), and median rest pain scores collected from 29 patients decreased from 7 (IQR 4–8.5) to 2 (IQR 1–3.5)(p<0.0001). #
We identified six patients (five women and one man) with a mean age of 83.2 years. All six patients presented with low back pain and four also had buttock pain. The interval from pain onset to diagnosis ranged from 1 month to 1 year. All patients reported that pain onset followed a fall. The mean VAS pain score was 8.2 before sacroplasty and decreased by 7.6 points 24 hours after the procedure (with four patients having a score of 0). #
METHOD AND MATERIALSWe retrospectively reviewed 63 patients treated with sacroplasty at our institution between 2004 and 2011. An 11-point numerical rating scale (NRS) pain score was recorded at rest and at activity both pre-procedure and post-procedure. The patient’s pre-procedural and post-procedural pain medication were quantified into the Medication Quantification Scale Version III (MQS III).RESULTSMean post-procedure follow up was 3.46 weeks (st. dev.= 2.87). Mean pain at rest diminished from 6.3 pre-procedure to 2.79 (p <.0001). Mean pain with activity diminished from 9.2 to 5.23 (p <.0002). 82.2% of patients experienced a numerical or descriptive decrease of their back pain (n=49). #
Other than the last one, I think those were different 10-point pain scales. So, yeah, not inconsiderable pain levels, with quite a relief upon getting the bone stabilized. I wouldn’t even try to rate my own pain levels from this on a numerical scale–since I consistently minimize the numbers–but this does provide some validation that yes, it really hurts. Moderate pain is the the best that it gets, and “at activity” in this context can mean just gimping around your own house. Yet I still keep questioning whether I’m making a big deal out of nothing, and just looking for an excuse to be lazy and, erm, have severe brain fog and not be able to do most of the things I enjoy, and stuff like that. Because having trouble concentrating on reading in larger chunks is so fun for someone who’s hyperlexic, and so on.
To repeat, there is nothing you can do that makes it not hurt. It hurts a bit less with rest, or with narcotics (if you have access to them) to dull it a bit so that you can actually do basic stuff (or, erm, sleep) with less misery, but it always hurts.
And that’s before you throw in anything else, like dental problems or other injuries. That’s not a linear increase, either.
BTW, I am not that surprised that they were so late considering that sacral insufficiency fractures might even be a thing, much less that there might be some way of treating them beyond bedrest. (Which, as that first info sheet points out, is a really bad thing for elderly people in particular; on top of everything else, “[d]isuse osteoporosis is a serious risk”!) From what I understand, the enforced inactivity like that is also a major reason a hip fracture is such a dangerous thing for older people. The sacral insufficiency fractures are something that mainly affect older people, the vast majority of whom are women, and osteoporotic fractures in general still get misdiagnosed and not taken seriously. They don’t show up on x-rays well, and tend to cause a lot of muscle spasms to try to stabilize the fracture; they often see the spasms, and stop there.* Hell, they only recently started trying to cement up vertebral fractures (“Overall, 25% of women over the age of 65 years and 40% of women over the age of 80 years have a vertebral compression fracture.”) And a lot of those also hurt like hell, about like you’d expect from breaking something in your actual spine. (Also try moving so that doesn’t cause more pain…)
I’ve tried the conservative treatment options short of total bedrest (no can do, besides its being dangerous and causing lots of spasms from disused muscles), but by this point am afraid it will just need to be glued back together. “My butt is stuck from shooting glue”?# I would almost try sniffing the stuff if that had any chance of working, brain cells be damned. And, beyond the joys of actually going into a hospital (not even the awful local one) and having a procedure done–with anxiety attacks just thinking about it–I do not relish trying to convince someone that I really do have a (bleedingly obvi0us, from the swelling and palpable fracture line–yes, you can feel it) broken ass, when I am not elderly or anything, and that it is just not healing with conservative treatment. And that it has indeed been very, very painful and I still have not sought treatment before this. I have no reasonable expectation that the pain would be taken seriously, even with an obvious problem which is hard to miss, and which is known to cause severe pain. Based on past experience, yes.
I don’t even dare to say that I am having repetitive looping thoughts about wanting to die, which are really about wanting to get some relief from the fucking pain.
Nobody reading this needs to get concerned about my doing anything drastic, either. This kind of thing has happened before, and it’s an annoying warning sign that some change is desperately needed to make my life feel more worth living.
Not feeling like I can talk about much of this has helped add to some depression, as well. Not too surprisingly. I don’t want to add that much more stress for Mr. U, or start into what feels like endless whining online. (I also still half-expect, “Well, then, why don’t you do X? You’re just going to have to force yourself to do X, or you have no right to complain!” )
A few weeks ago, I was going back through a few blogs I have only been kinda-sorta following, to see what I’d missed. And one post gave me pause.
Yep, I may have found a therapist I can actually work with, as nervous as the idea makes me based on some other past experience. And what looks like one bus ride away, iffy as public transport can be with a broken pelvis. Physically getting there is still a concern.
Sounding pretty good so far:
Want to talk about it?
If you’re sad or in a bad way, broken-hearted, feeling hopeless, beaten down, scared and confused, haunted by the past, or down in the dumps; if you’ve got the blues, or have no one around who can listen; if it’s hit you at once or there’s been a long and slow build-up; if you feel like you can’t go on, need space to work things out, can’t handle it alone, want to know who you are, need to take care of yourself, or can’t face things; if you’re struggling to get by in a world that would rather you didn’t exist; if life is blah, if you’re struggling to feel alright, if you just want to feel better, if you have more duff days than great ones, or keep making the same mistakes, and for loads of other reasons, therapy can help.
And, a further excellent indication:
I also welcome people who might need or want a therapist who won’t make a ridiculous fuss about their particular situation. This includes but is not limited to academics, activists, anarchists, bisexual people, club kids, disabled people, feminists, gay people, geeks, goths, lesbians, people in poly relationships (or who are thinking about it), people who do BDSM, people with autism and Asperger’s, people affected by HIV/AIDS, poets, punks, queer people, sex workers, trans and gender variant people, drag queens, working class people, writers, and so on…
From what I’ve read of her blogging, she seems to have her head screwed on pretty straight anyway. Before we even get to maybe actually feeling comfortable about discussing things covered by that list, I had to think of the “small” things like being able to go to an appointment comfortably dressed, with no makeup, without getting mental health concern trolled over it. (Gee, I felt a lot better about myself before you started pathologizing my not feeling like lipstick today/gaining 10 lbs./etc…) Huge difference in approach to anything I have experienced in past. Working from the assumption that yes, there are some systemic problems you may be having trouble dealing with–and, no, you’re not “crazy” for recognizing them–is an excellent start.
One of the persistent problems I have is setting goals and planning. This is probably PTSD-related; I was also never actually encouraged to set my own goals in previous experiences of counseling/therapy, which was a pretty big problem in itself. (There were plenty of others, mostly coming from its not having been voluntary, but yeah. Both distracting and too triggering to go into right now.) But, in this case, I am thinking in terms of triage, and the thing that would probably make the biggest difference to my quality of life right now is trying to get my physical health taken care of. So, I am considering trying to get some help with getting to the point of being able to try for some medical care again.
Another thing that might help there, if possible, is some practical suggestions for navigating the system. I think one of the problems with access I’ve run into is pretty simple: I’m a doctor-avoiding foreigner, living with another foreigner who has sought medical care once in the over a decade he’s been living in the UK. (His elbow must really have been hurting that time…) Things might be different if I had in-laws used to dealing with the NHS, or closer offline friends to ask about stuff, but yeah. I don’t have a great idea of how the system works, other than on paper, much less how to use that to my benefit. I had the knowledge to do that a little better back in the US, but also had a lot more help. (Even if it wasn’t always the kind of help I wanted. Ah well.)
But, just having someone else to bounce this stuff off of–who is hopefully not assuming that the entire problem consists of me and my unsavory weirdness–might be helpful. Not just with this, but definitely dealing with both trying to come up with some other coping strategies and dealing with some of the obstacles keeping me from getting basic health care. I still haven’t gotten in touch, but I am seriously considering it. And I’m fairly secure at this point that I’m a grown-ass adult who can just say “well, this isn’t working” and walk out, if it comes down to that. With similar applying in medical settings, yeah.
* Personal experience there, too. The first serious bout of what in retrospect was (then undiagnosed) celiac-related bone density problems, vitamin D deficiency, and other deficiency symptoms happened in my mid-20s, aggravated by a number of factors including meds that made me photosensitive and overheat so that I had to stay out of the sun. So, no making up for not absorbing what little D I was eating. I seriously messed up my lower back (digging a grave for a cat, actually), and the orthopedist did see a couple of obvious compression fractures on the x-rays–which, to their dubious credit, they did insist on taking before putting it all off on stress. I saw those x-rays, and they did look like the ones of compression fractures I’ve seen more recently. Since I was young, apparently healthy, and so on, the response was “Gee, I wonder why that’s looking so compressed, but it’s probably not serious. Hahaha, you can’t relax those muscles at all! Here are some muscle relaxants, and you really need to work on your stress levels!” Seriously, the guy LOLed at my back being locked in spasm for, erm, a couple of months solid; no idea what he was thinking there, nor did I really care. (ETA: At that point, it had only been going on for a couple of weeks, but that seemed past time to try to find out what was wrong.) That didn’t do much for my stress levels, I tell you what. I didn’t go back there again, even though they did also give me some Darvocet instead of just the usual NSAIDs. (Yes, that was nowhere near the only back or other musculoskeletal problem I’d run into at that point, when I was “too young”.)
It got treated as mostly a mental health problem at home, too, probably aggravated by the poor cat dying. Oh, and I was taking too many pills for something no more serious than that. Only an unusual experience in that there was something showing up on x-rays, which promptly got dismissed. And, apparently, I need to bitch about it all these years later.
I seem to be on a medical roll lately. Another from Tumblr earlier, which I thought was relevant here:
This is a great article. Take a read if you’ve lost hope in doctors and it may give you a new perspective. I was researching and looking for doctors who actually have chronic illnesses but came across this.
[fibrofrog:] Thanks for posting this. I feel like I’ve had to learn many of these things on my own after putting up with countless upsetting doctors visits (like learning how to not come off too strong, establish a long term relasionship, and to only bring up a few problems at a time etc), so I think this article would be especially helpful to anyone that’s been newly diagnosed. A small part of me does still wish that I didn’t have to tip toe around my doctors feelings though, because whenever I come off as too knowledgable or as someone with too many questions then all of my problems are entirely dismissed and I end up leaving with no treatment :/
[nihlaeth:] I appreciate the honesty, he sounds like a decent doctor. But seriously, you scare doctors so you should forgive them?? I should come over less strong??? I’m not there to stroke someones fucking ego, I’m there because I have serious medical issues and they’re payed a lot to help me with that. Fear is no excuse. Human beings should treat each other decently, that goes both ways. Being a doctor does not entitle you to special treatment. And it certainly does not give you the right to treat me like less of a person. I’m sure this advice goes for the kind of doctor who wants to help but has communication issues (want a diagnosis for that?), but the majority of docs I’ve met are right-out assholes who only think about getting me out of their offices as fast as possible, often refusing to even medically examine me. I’ve been told Ehlers Danlos Syndrome is a “womens infirmity”, that I was making it up, that it was all just stress and that I should stop reading up on the internet because it was making me sick. I’ve been called crazy more times than I can count, even though everyone with the tiniest bit of interest or decency would have at least tried to confirm or dispel my story (which is actually very easy, do you want me to show you my dislocated shoulders? Just pick a joint and I’ll show it to you). If you want me to not avoid doctors, doctors should start trying to help me instead of driving me to suicide for a change.
[me] I’m sure the author meant well, but this article made me very angry with all the apologism for disrespectful behavior. In reality, yes, we do have to try to work around some harmful God complexes in order to get a bare minimum of appropriate care. Maybe from his perspective, it’s reasonable to expect this ego coddling to continue, but where’s the incentive for some of these medical professionals to act like responsible adults and, you know, not dismiss and abuse patients out of frustration and narcissism? It’s understandable that kicking people while they’re down is too common a pattern, and we should try not to make doctors want to kick us more? Depressing.
It disturbs me even more, in a way, that he probably does mean well from his own perspective, and still comes out with a bunch of not-so-subtle victim blaming. Patients get treated disrespectfully, sometimes in ways that really do harm or kill us, but we need to stop provoking it. (No matter that we still often get brushed off and told it’s “all in our head” when we do try the asskissing. And that some of us are really bad at showing the expected deference, even when we don’t have brains scrambled by being sick enough or in enough pain to need medical help in the first place.) The power dynamics couldn’t stand some change, we just need to get used to the system as it is and suck it up.
I am also bothered by the whole “doctors as a group” vs. “patients as a group” assumed dynamic here. That leads to a lot of problems, as it is, and in this case some of it borders on the old “why you hate men/white people/etc. so much?!” way to deflect real criticisms.
Interesting juxtapositions here:
2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease. These doctors should be avoided. But most of us are not like that; we really want to help people and try to treat them well. But we have worked very hard to earn our position; it was not bestowed by fiat or family tree. Just as you want to be listened to, so do we…
5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made. It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems. It helps me to prioritize with them.
6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship. Don’t feel you have to put up with docs who don’t listen or minimize your problems. At the minimum, you should be able to find a doctor who doesn’t totally suck.
Because there’s never any good reason that anyone would avoid doctors, right? Poor doctors, getting all frustrated at having to do some problem-solving, and not getting treated with the expected deference all the time. Hint: I don’t think that’s the way most lack of respect shown flows, with the hierarchical setup here. Treat most people with respect, and they’ll respond in kind. If you’re not using “respect” as code for “sometimes harmful deference to authority figures”. I’ve been viewed as not showing that brand of respect by saying “I can’t take Medication X, because bad reaction in past”. Seriously.
Also, this apologetic “sure, thre are some jerks, but you can easily avoid them” totally ignores a major reason I am currently avoiding doctors: some of us are in managed care setups (or totally without insurance coverage), where we cannot easily change doctors if we’re treated badly. We also have to take whatever specialists we’re referred to—assuming we can get a referral at all—and do not always even have a right to second opinions without going private. (This HMO on steroids setup does very little to encourage decent behavior toward patients under the NHS, in my experience, but that’s another story.)
Some of us mostly have to take whatever we get. Sometimes that does more harm than good. Then we get bitched at when we do have to seek medical help again, because by that time we’re in really bad shape and, erm, really need help rather than browbeating and gaslighting as a substitute for actual medical care. Also, just because someone is unable to seek medical care, sometimes for a prolonged period of time, that does not mean that they are experiencing no significant problems, nor that they are showing no concern or responsibility for their own wellbeing.
Then there’s 7. Forgive us. Yep. If you, as an individual, treat me with respect and are honestly sorry about screwing up, that’s reasonable. As a group, with no signs of desire to fix any of the systemic problems, not so much. I could go on, but this is more than long enough already.
Talk about entitlement and lack of real understanding of the experiences of people dealing with chronic health conditions. The doctorsplaining kinda adds insult to injury, pretty literally in this case.
Do doctors realise how dangerous this is? Do they understand that because of this constant doubt, we all wait until our head has actually fallen off before we can be dragged kicking and screaming to accident and emergency? Us sickies all know – there is only one thing worse than trying to get an out of hours doctor to see you and that’s having to do it on a bank holiday.
We wait until we can’t walk, talk or eat before we’ll go near a hospital bed. We spend weeks longer than we should convincing ourselves we’re really fine. In fact, convincing ourselves that it’s “all in our heads”
You find yourself justifying things with friends that you don’t need to explain. You doubt yourself – did you cry off your sister’s birthday because you were heaving over the sink, or did you somehow make it happen because you didn’t really want to go? Did you come into hospital for a nice rest and a few weeks away from the kids? Are you really just an attention seeking drama queen?
It never goes. Every new symptom brings a new set of challenges. Every test that comes back fine makes you wonder if this really is the time it’s “all in your head”…
“Don’t ever be one of those doctors. If you cannot find out what is wrong with a patient, you have failed, not the patient. Don’t ever blame a patient if you can’t find out what is wrong with them, blame yourself. Lazy doctors blame the patient. Good doctors listen to them.
And with that, he wafts off in a cloud of quiet importance.
Doubting your patients, judging them, labelling them, is dangerous. But most of all it’s cruel. It leaves scars deeper than any surgeon. Yet I’ve met precisely four people to talk to so far this stay and it was ALL “all in their heads.” Unlikely, isn’t it.
As an aside, I didn’t even mention the (IIRC) third item in the “letter to patients” thing, about not using the ER unless it’s absolutely necessary. (And that you should reasonably expect lousy treatment if you do need to go through the ER with a chronic condition. That is basically what he is saying.) But, yeah, I don’t actually know anybody who does that; more the “we all wait until our head has actually fallen off” pattern Sue mentions in that excellent post. And it strikes me as even nastier to add that extra doubt as to whether you really need to be going and bothering them when your head has fallen off.
I do know some uninsured people in the US who mostly have access to medical care through the ER*, with all the complaints about their tying it up with minor complaints and letting health problems get serious before they seek treatment (make up your minds, please). Also, IME, people in that situation will hold off until they’re afraid of dying or, say, losing the use of a limb before they rack up that kind of bill. But, totally different issue.
* I barely avoided it when I was back in the US, uninsured. In 2008, I had a hell of a time finding a doctor who would even see uninsured patients at all, even with the usual pay before they’ll even see you arrangement. (Luckily, we could afford office visits.) One of the hospice nurses got concerned enough by what she saw of my health situation, with what was in retrospect at least one vertebral fracture from hefting my mom around, and a bad chest infection–I wasn’t even saying anything about it, just looking in bad pain and sounding disturbingly croupy–that she called around on her own time, and found one GP two towns over who was willing to take me on as a patient. That ended up being pretty bad care, but yeah, at least he gave me some antibiotics and diabetes treatment. If that nurse hadn’t been such a caring person, I probably wouldn’t have even gotten that help. I knew better than to try to go into the ER and expect decent treatment for back pain, and I didn’t want to rack up ER-level bills over croupiness that didn’t look fatal.
I’d been uninsured before, while poor, and the situation wasn’t that bad then. Figuring out how you were going to pay for it was the big problem, not getting in the door in the first place. I feel for people in that situation now.