Skip to content

Trying to get some help

April 29, 2013

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 MATERIALS
We 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).
RESULTS
Mean 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.😉

3 Comments leave one →
  1. April 29, 2013 5:13 pm

    Accessing and changing GPs varies according to your local practices – there is a lot of geographical variation around procedure, but it is always possible to change. I’ve dealt with various different systems and moved around a fair amount. I’d be very happy to help you with this. My e-mail address is the name of my blog at Google’s mail service.

    • urocyon permalink*
      April 30, 2013 7:25 pm

      Much appreciated. I only found out when I got the last smear test thing in the post that the last one had apparently dropped me, but I hadn’t made an appointment in like four years at that point. I did get some “we’re not accepting new patients” or “you’re not in our catchment area” (yeah, right, we’re in nobody’s catchment area!) brushoffs when I was trying to find a GP before, but going to the surgery in person instead of ringing discouraged that. (Besides the hearing/auditory processing having gotten to the point that I am just not doing voice calls if I can help it at all, so I pretty much need to show up in person.) I am hoping, though, to sign up somewhere with online appointment booking and refill requests available.

      But, yeah, actually finding some kind of new GP shouldn’t be the major problem, more trying to deal with them afterward. *wry smile*

  2. Allison permalink
    May 4, 2013 11:12 am

    Hi uroncyon,
    I was browsing on your gluten-free Southern Cook blog and it redirected me to this blog to read an article you re-blogged. Unfortunately, I don’t have much practical help and I certainly don’t know much about the UK system, but I can share your frustration of having to go to so much darned effort just to get a doctor who can understand the simple yet basic principle – that humans are individuals and not machines! Of course the drugs, might be fine (though I really doubt that) but still not working for you. It is amazing to me that with all of the info written on the holistic workings of the body with so many variables, we are still treated as “products in – same results out” by people who don’t seem to be relating to you as first a person and second is not listening to you when you try to explain something about yourself -of whom you are an expert at.

    I posted a comment on your cooking blog (which I was so happy to find today) and I have been expatriated from the South (NC & GA) to living in China for just over 8 years. If there has been one thing I have learned it is how to stand up for myself – especially when it comes to dealing with doctors from around the world. My fifth child was born in Hong Kong and I had a British Dr. whom I thought I loved until she insisted I had diabetes based on my glucose tolerance test. Now I am not a doctor, but I have had four previous childbirths and glucose tests etc. etc. So when I asked for the results of my blood test, and had them reviewed by my previous OB/GYN at home, they clearly indicated I was not diabetic.

    After trying to explain this to her several times and coming up against a brick wall, I finally let the whole thing go and trusted in my own research and the confirmation of doctors back home. She also tried to get me to take huge amounts of iron supplements that puzzled me (my blood work also confirmed I was not anemic) until I learned from her nurse, she had a lot of supplements in her office she wanted to get rid of. I also didn’t take the supplements, though unfortunately I did buy some of them until I started looking into the dosage.

    So sorry to ramble like this but what I really wanted to say to you was to continue to trust your instincts!!! I have never been, nor am I now “anti-doctor” in anyway, but after so many times of dealing with this, you begin to realize that they do not know YOU as well as you do. You need to find a doctor, maybe even a homeopathic one who will listen to you and not make you feel inferior. This British doctor was I learned typical of others I have heard of from my British friends. The mentality is – you are the patient and they are the experts, you are not to question this. This is NOT what you need.

    I love your Southern Gluten free blog and I am so sorry you are having difficulty with your health. I would just encourage you to continue with your own research and keep looking until you find a better match for you. Do they have Nurse practitioners or MDs who are sympathetic to alternative treatments? I might look for that as opposed to a strict MD. But again, I have no idea about the system there. I do know you are wise to question this attitude. Keep writing as it has helped me over the years clarify my own thinking and document when I am feeling “crazy” and wondering if it is me or if my gut feeling is right on the money.

    Take care and let me know how it goes. I will keep reading your blogs.
    Blessings,
    Allison

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: