Tuesday, May 14, 2013

Notes on Patterns



After reviewing more but in summary and really in part from both personal or professional, most docs use amongst mostly the things in literature that point in this direction for what "criteria" that most use, and the first is one that I have difficulty, another friend yesterday told me after moving, and attempting for example to simply find a opthamologist, as she too, has a history like my own, and her comment, "They are getting lazy, and he said 'too many problems' and that basically he did not want to deal with me because I have too many problems-almost like they don't even want to be doctors anymore."

Well, similar experience, but I won't pretend I want to know (or in reality and in truth, I simply decided at this point, I simply don't care anymore.

But to note, any of the following will certainly in review of literature or of experience, and sad as it is, I haven't seen much to the contrary:


  • complicated history
  • substance abuse (sometimes they will sandwich a person with problems related to chronic pain and in my own opinion rather unfairly-into this category because it I guess seems easier than sorting out what could easily be a physical cause for example)
  • Someone who has been very sick, and by that I mean, has either been critically ill, and is in a weakened state, is recovering, and finding life has just gotten so much more complicated, and they are tired, and in part, wish people to leave them to recover, and rest, but the micromanagement of healthcare requires multiple visits with multiple specialists  a group largely speaking, a lot of docs resent their personal time being "infringed upon" and have in sone used threats of humiliation (in my own experience, one dentist-yes, he was fired, but more for lack of any honesty or competency, but after it was too late for my own dentist in a new city to do anything to fix what had been so thoroughly decimmated by someone who failed to read literature that was handed to him)
  • in similar regard, to add, anyone with multiple diagnoses that are complex in nature, God help us all, is going to have a hard time finding care as much as anyone with an actual history of substance abuse as well.  
  • Mental health disorders-bipolar disorder (can be quickly made into a personality disorder, and a huge difference exists-someone with actual personality issues takes many years, multiple visits, and much observation by one set of providers to diagnose as such-but makes it almost impossible if this is in addition to a history medically that is complex, that has a history even of depression-and that's a very normal response to the final (though this is not an exhaustive list by any means)
  • anyone who simply may have trust problems, or is simply angry with whatever issues-life can just tick anyone off at some point, but I mean people who are seemingly angry for whatever reason all the time, and allows it to bleed into a physician relationship-be it accidental or otherwise-will certainly find it hard to get care-but this isn't even exhaustive to someone with a mental health problem, though many would easily gain a diagnosis by having a problem, for example after dealing simply with some who have had what simply could be described as a few bad experiences and is trying to trust in a system that isn't the same.  I know my own issues not as much with anger with physicians as a group, but many I have found difficult personally to trust, and when uncertain where to place it, one can find it difficult to find care when simply having had a bad experience-or in my case, a series of them), it can help to return to what is familiar, but a new physician who may learn of bad experiences, of how complicated your history has become: legally and ethically now, there is nothing requiring most physicians to retain you as a patient, or even accept you as one.
  • interference by a third party-be it "friend" or family members can irreperably damage the ability to seek care.
  • Actually having a substance abuse-but combine it with complex physical problems, and a mental health diagnosis-even in history can certainly make it exceptionally difficult.
  • Having a rare diagnosis, in which a doctor has to research what is wrong, even within their own specialty, it's quite frustrating.
  • Those with problems with memory who for reasons of age, or for example, in my own case, disorganization caused by ADHD can lead to trouble even-as my attention span has it hard for me to get ducks in a row enough to get a list even together with everything that is necessary before calling a doctor's office-multiple calls in a short period is as toxic as they say to the doctor-patient relationship that finds a person in trouble.
  • "Multiple complaints of pain." As is commonly stated, "with or without a cause."  Um, folks, if this is pointing out the obvious, have they agreed on one in my own disorder (RSD)?  I mean, categories is one thing, but even Type one is partially more honest in that an "event" triggers this disorder, but why is one thing I can't say I see anyone agreeing on a conclusion.  this could lead to further discussion, but for reasons of length, stopping here seems to be best, and saving the discussion for another time.
And many times, even when it's recognized that you have a complex set of issues, for example the immense fatigue within my own disorder: RSD being my primary diagnosis, I also have a huge set of gut issues, and it gets very hard at times to even keep medications in, sometimes requiring a different route, for example, my estrogen is in patches for this reason, as are some other medicines, and I don't publically discuss my own treatment but suffice to say, contraversial definitely describes it-at least amongst physicians.

Reflex Sympathetic Dystrophy--aka, CRPS, to me it's RSD, as that is how I've always known it, so to me, that is what it remains.  And many of us are taking a beating (hopefully not in a physical sense, God knows life can kick many of us around none too gently) but in reality to speak specifically this has in my experience, a disorder as one friend says, "leaves a doc running for the trees, his or her 'mommy' and probably a few books, and once they read even part of it, you get the boot."

Unfortunately she can be right.  Often has been.  As unfair as that may be, it's also as unfair to anyone with mental health disorders, to recovering addicts, and anyone who's fought the "good fight" and come out on the winning side, only to find it extremely hard to find adequate healthcare.

Specialization has made it even more difficult, and many of us with RSD are continually exhausted to the bone simply keeping up day to day life, let alone the continual peppering of doctor appointments, and a calendar that may never feel like it belongs to you.

Along with grieving, and normally so, in terms of newly diagnosed people with RSD, I can certainly say one thing, fighting with the diagnosis makes life harder-accepting it is a step, and a hard one.  When it's a misdiagnosis, accepting it is also equally hard, but one saving grace-has really been just that: learn to trust in God, it seems easier to trust yourself.

The rest will eventually follow.

Knowing also that not only is one in no way to blame for having a chronic illness, though a fair amount of it will likely come from a doc-for example depending on what is wrong: it's easy to "blame the patient" for a problem, but even when that is the case, whether you feel it ought to be admitted to-um, keeping the faith, and letting go of blame.

And knowing when it is simply time to move on when a certain provider, though not directly clear-is not interested in treating you.  Forcing the issue is as damaging to you as it is to the relationship with a provider-if you feel that they are not interested in treating you-chances are you may unfortunately be right.

After reading on reasons that some doc-patient relationships fail-too much self-examination, I feel can be as damaging to the next doctor you see-and knowing to leave the past bad experiences where they belong-in the past-know what mistakes you made, focusing on repairing what you can: yourself.

The more healthy practices any doc sees, who is that is, honest, and that one is capable of healthy change, I think is that any doc worth their salt that can spot a person capable of spotting much of what lies in their own court, and dealing with it: be it through simply implementing change, and the ways one seeks out how to deal with pain for example, then we can also know that anyone incapable of change: is a toxic person to have around.

For myself, I know eccentric is certainly a good self-description-that my own oddities are hard for some to accept, I do the best I know how to keep them out of the doctor's office, in particular, my sense of humor, I can say one thing that will remain difficult will be keeping a provider, and little has to do with me as a person: as a "difficult patient" myself, yes, I do finally think access may have been granted-was it my first choice, no.  But few choices exist in providers for anyone with complexities in care, but sometimes, a larger hospital system is best.  I may not like being a "number" as some say, but some comfort lies in the anonymity I am beginning to feel.

I know this may shed little light as to why modern medicine is being practiced off of a computer, a Blackberry or an iPhone, but for someone who hates cell phones, I guess that is my own personality quirk.  Makes re-setting a password harder these days, but well, patience with them has to do much with it, so I guess knowing when to stop.  That can be key.

Even for some of us, it can also be when one treatment needs to be stopped-for me, I had to check off the nerve blocks: crippling was what they were for me, and second, a vey severe reaction to NDMA receptor limits what I am able to do.  Consult an expert?

Take my pick, I suppose-but if all they take is Visa, I plan to keep going.  I won't go into a great deal of debt any more than I'd sell a home to get something like one treatment with ketamine: though many hard won victories have been found, given the reaction-beginning with bloody noses and ending in a visit to the hospital for a hypertensive crisis?  I guess I would need an additional diagnosis for it.

I hardly need that, I suppose.


TO COME:  Working in repairing a doctor-patient relationship or when to move on, how to know-that part is up to the individual.












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