Oral surgery is one thing the UW does well-they train them. Being a teaching case is one thing. Allowing yourself to be operated on by a student dentist is another. RSD is a serious illness, and it cannot not affect every part of the body. And I believe when one new doctor begins the required research to present my case: well, I think she is already quite intelligent. And highly compassionate.
It's a refreshing change. A minor change in one prescription she wrote-adding dextromethorphan to the phenergan I take (aka "promethazine) for the overwhelming nausea that caused me to obtain the medical marijuana permit-to which she never so much as retained a copy for their own records, I guess those prescription monitoring programs must be very "up" on what I do with the stuff.
It's called treating the actual problem. You keep the card even if it's legal because folks-do they label whatever you buy from the dealer? Do you know if chemicals were used, if mold is present? Do you know there are up to five-detectable levels in lab tested medication is one thing-different ingredients in medically grown marijuana?
It might be expensive to use dispensary medication, but I will be perfectly honest: yes, I've used both-sometimes to at least have some kind of something and during the very brief time I could not get a ride to the "weed doc" sure, I did get something, but from a fellow patient.
I know how to made a few medibles, a skill I picked up before it? Sure. When a doctor-naturopaths issue permits in my state, they are the most qualified to do it, the state even knows, but certainly, a pain doctor does need to refer you.
But I went to that treatment, not with my eyes closed, as many do, but with them wide open to the fact that marijuana has five active ingredients-THC, dTHC, CBD, and well, does anyone need it spelled out? It's as unpredictable as any other drug. Or "medication" and since marijuana is a prescription, and a C-1? Even in Washington, which is the only state where possession is not enforced? No, appearances are not what they seem.
Get caught with 2 pounds, you go to jail like any dealer with intent to distrubute tacked onto it in all likelihood, and well, with 24 ounces-and most pay about $200 for it, and up to $250 for one ounce? That the clinic I renewed my certification at said basically if I want more than what the one local cop I find even tolerable? My "pound and a half"? Um, times 24, that would cost? LOL, on a federal disability, I would be a moron to spend that kind of cash. And probably would be taken to jail. Rightfully-it's called a nearly free-dry out.
People will get addicted to anything. And for everyone, I believe, in each of us lies something that we have a hard time with. For some, drinking, for others, opiate narcotics, some for some reason known some say to God, to me, I think the opposite. Only from the pit of hell could someone come up with something like methamphetamine. My guess is in the beginning most figured something along lines of Ritalin. I doubt they got what they bargained for. But to get addicted to being floridly psychotic, I fail to understand the lengths people go to inject gasoline mixed with things like lighter fluid.
My first day as an Emergency Medical Technician, age 19, I walked into the ER, passed a "Anti-meth" poster, but in those days they did not hang the booking photos of someone who wrecked havoc on their bodies but they put up the actual ingredients-to some you would thing gas, cold meds, and Good Heavens, just about any ingredient.
I congratulated the Nurse Manager. "Good job, you are handing them a recipe." It was taken down immediately. That today I likely would be ignored?
Or laughed at for being a "weed smoker" and told that I am killing brain cells. Um, preserving them actually because having taken medications from "modern medicine" I have been able to safely say? "Weed" as some call it, hemp, etc, is one of the most difficult to manage if you know nothing going into it, save what the dispensary elects to share. Which unless you go high end?
You wind up with something that may not be what you need. I listened at first to them. Unfortunately it was someone in it for the wrong reasons. That I was also left sitting out in my home-and acquired a hospital visit, and by ambulance because I couldn't pick myself up off the bathroom floor, was as swollen as they come?
And nothing was being tested-meds were never labeled, I finally noticed-another dispensary? You bet after the way local hospitals have begun treating patients. Formerly? You had no ride home, they at least would give you a cab voucher, and send you home safely provided the patients had one.
More than once as an ER nurse, I did pony up-at times, up to $20 or $30 once, to get a patient home-or at least to a shelter.
Any given time I leave a hospital ER, patients are sleeping off a Diladud, Morphine, or whatever medicines they are screwed up on as what would even five years ago have been considered irresponsible both by nursing staff and by the ED physician prescibing those drugs-now? The least path of resistance is being taken, and patients are paying a heavy price. A very heavy one.
Myself? God, if I wrote in this blog even a fraction of the abusive behavior? When a patient who is normally bed-or at least wheelchair bound in three years of "treatment" following a surgery that the orthopedist if he had checked my history-his only question being why I hadn't returned to his former medical school friend? The guy may have saved my knee, but had they been close, he would know his friend had passed away of pancreatic cancer-or I would have returned. But coming to learn that not only that, but that he'd suspected that I had developed this after the second of three surgeries to give a 17 year old mother a way to continue walking-he also advised no further knee surgeries-despite several office visits, I wasn't given the information I had to make the right decisions for myself. The knee problem, yes, was corrected, and until 2 years ago, I was able to walk well-to some degree I can, with a crutch is mostly best, but I hate the crutches-would I prefer a cart? Likely.
But why bring the medical marijuana up? Because I believe firmly that it saved my life. To a degree, set me free of the worry that was continually on my mind-that I may have an ache in my jaw, but that only one full dose of a pain medicine only now-nearly eight hours later, almost ten? That I get anything now, I can barely function and that even entering the atrophic stage? I manage, yes, on some amount of pain medication, and sure, it's scheduled.
Stage four doesn't exist? I assure you it is alive and well-that I can name not just one, but at least 2-3 patients like myself who are wrongly labeled Stage 3.
No cure, but Stage 4 is suddenly gone from advances in modern pain management? This disease has affected my gut, my lungs, my central nervious system, circulation in my feet are now compromised the muscle spasms I get are severe enough when not with the right meds-not always weed guys-I do avail myself of modern pain managment too.
What if I told you patients on a medical permit studies clearly show we have lower doses of any of us that are on opiate therapy.
Standard of care?
That a man now lies hospitalized but not at the local hospital where a female security guard assaulted him, that in my mind is a sin. Not of his own-though the (then discharged patient, much like me, was a wheelchair bound patient-and being as was I, though slowly, and not to their liking, but what I saw stopped me in my tracks. It was a level of sick behavior that keeps in fear of ever going back.
That I've already placed a call to my new primary care doctor with a message that I am calling and via Skype, but because I have no (the actual phone, service I have, it is called paying a bill-contrary to what many in my own family choose to believe, they know exactly where they stand, and well, I believe I understand better than ever now why so many views of this blog have been in place, and I am guessing it's the total breakdown of the doctor-patient relationship, disallusionment with what doctors formerly provided.
Marry Poppins said it, "A teaspoon full of sugar helps the medicine go down."
When a doc used to spend more than five minutes in the room, and now a medical assistant with less than ten months of training is now fuklfilling a role that fifteen years ago would have been at least supervised by an RN who would be easily accessible? I think that much of that is part of it.
Other things also are things I find terribly disturbing as a former ARNP-level training. That a friend's child-though 37 at the time, a parent is a parent-and it for 98% of us, anyhow-never stops-even if your child dies, you think of them constantly, you miss them with every fiber of your being. Whether you were to be destined to keep, raise, and well, in my own case, hopefully walk her down the isle-you were a parent for life. That my own flesh and blood has never laid eyes on his own grandson.
Is reflected by his own behavior. That he does not remember the night his granddaughter was born? Or the day she left this earth to be with Christ, the Savior? To me is a great tragedy.
But one thing I can think of no greater tragedy and that is one of a wasted life. And after a life of nothing but the suffering of others, confined to my own home because of my own physical limitations?
I almost consider it a reprieve-sure, and the thing about the pain improving with the atrophic stage?
It is a load of boloney-I'd say worse, but I made a goal of my own.
Watching my own moth-at times, and largely of stress, I can cuss with the best-but truthfully little is said with talk like that. Verbally.
I think when it's a teenager and it's every other word? It used to be called showing off, preening-and well, probably looking for some acceptance. And quite frankly that the f-word is the choice in most cases, shows of little creativity in my own learned opinion.
Well, work in an ER, on an ambulance-you will hear a lot. Work in a nursing home, you will hear far more, but there, you grow a very deaf ear. Because mostly it is a response after many have a stroke, and they often don't have the ability to say more than perhaps maybe 3-4 words, and that is normally after a good deal of therapies, and so forth.
What is tragic of all the changes in healthcare? That most of the abusiveness I see as a patient but remembering always the job of the providers, is that there is little compassion on the parts of providers. When docs used to take a patient's word. Now they treat old medical records.
Great, we used to use a medical file from previous providers, not to judge, or even gauge what a patient was like-that was done upon meeting the person. I was also taught that you asked them what they preferred to be addressed as-and that was what it was called-be it their given name-or something like "Shorty." It's what gives you a connection.
And I am of the belief that one needs to exist on some level-or you are the last person who ought to be making decisions for someone even medically without knowing-do they have religious beliefs, personal ones (I myself do) and what were they? It was always part of my own assessment as a nurse even to ask questions of sort of if it was to know a bit about someone.
That for example a quick trip into a local ER was about as disasterous as it gets-that sitting in a lobby trying to message someone-not knowing that another had a prolonged emergency of her own, that it was never able to have gotten a message to me, that possibly if need be-I may have to find some other route of transportation. That a good friend is also in need of a-well, a friend, and some prayers.
Which of course, will be forthcoming, and are.
But when your teeth are in the shape my own are-great dentition does not run in my family-that the men in my family do fare better, is also a clue thy at OP runs in my family and why mostly I use my chair-it is known as prevention.
And is it practiced? Hardly. If you can "pony up and pay up." And that almost every pain clinic for example, save ones associated for hospitals are allowed, and almost all do? Ask for?
Just to secure an appointment.
It was that part I have a problem with. Not anything associated with peeing in a cup, whether opiates are given I can and always was able to tell them exactly what they were going to find.
But that I use my medical card to keep off them to the degree that I can. When your back also resembles what my own does-a spinal curvature went undiagnosed as did EDS III-but as well, probably one other type, that the same condition is related to my low blood pressure, orthostatic nonetheless-stand up fast?
Right.
But any of the "private clinics" that one may seek treatment at, you will be billed $600 to the card for not showing up. Or a hundred bucks goes to collection-and they don't wait. If your insurance was not taken, and you even went and showed? You either paid six hundred, and one kind friend offered to, and I told him to put his money away that no idiot doctor in their right mind deserves that kind of money-five years ago even-for an initial consult and he could burn for that kind of cash.
Little did I realize the irony of my own statement. See, there was a person in my life aware completely of the diagnosis in 1990 that probably dated back to the 1983 traumatic brain injury I took-the extent leaves a plate in my head-no, hardly do I set anything off unless a body scan is done: the plate is small. Back then-oh brother-Burr holes in the middle of an ICU was what saved my life.
NOW? Ha, you get what is known as a "bolt" and had time permitted, they likely would have used the type that goes deep into the center of the brain, through brain tissue? Into the ventricles. It gives yes, the most accurate reading, and since others are developed for the less serious ones-but I garauntee you if one is used at all? You are very critically ill, and well, comatose usually be it in a barbituate coma as I had been at least initially-worried the doctors when wakey wakey did not happen right away.
Kids, however, always have a mind of their own. And their bodies are not that of miniature adults. And is why they ought not be treated as such. Specialization is one thing. Referral to one for a bladder infection as a friend's mother once was-I only could roll my eyes. Do I know the feeling?
But what I also learned in nursing was that you don't treat fully grown adults as a child. You at least assume that they can read. Or if you are aware they can't it still doesn't mean that they are as some now jokingly refer to me, "drain bamaged" and amongst friends, I know the joke is on me, and learned long ago that the ones using the term recognize my history-that I have temporal lobe epilepsy and psychomotor seizures are highly unpredictable, and some you cannot tell they are having them, bot one thing they aren't is a behavioral issue.
But I have always believed, to return to the topic at hand, in pain contracts, that when my new neurologist-who quickly lost interest in treating me upon learning the actual complexity that gastroparesis also accompanies this "new patient?" They failed to continue returning my calls once he felt that my "pain management" was fine because one of his referrals panned out?
Yeah, the doc he referred me to is very human. I say this dryly with a reason. He's not got great ratings, few pain docs really do-some of the work is incredibly hard, people are physically and mentally in a lot of pain when living with something like RSD, and I never think that they really understand the necessity of controlling anxiety.
It is a normal response, folks, to a severe level of pain.
But one thing that appears frequently in RSD literature that I find myself at odds with. The McGill Pain Index. I find any number rating offensive in a way. I also as a provider find it a very poor representation of the real level of pain someone is in.
You leave out anxiety, the fear of not always knowing why, the frustration of a potentially failing relationship with a provider, not knowing if this one is going to work, that your pain that has you hunched over watching the clock? Does it ever resemble something like this?How long have you been waiting, that the pain seems interminable, like it's going to go on forever?
That in six years, he never actually did a single one, had me sign a pain contract, which nowadays is pretty much standard, that one outside consult before him, had resulted with me being put on the one drug I hate more than any other, that I have had myself taken off of it (methadone, to be frank-I hate the side effects, it rots teeth, with crummy genetics in that department as well, and pointing out to the provider that I had no dental, could not afford it, and he spends the better half of twenty minutes arguing with me over it? And despite the fact that I spend the better part of half my personal income attempting to help relieve my pain in some way--be it distraction, be it pain relief-or the medical marijuana that has decreased my overall swelling so that when it happens, there are not the huge fluctuations in weight I formerly had?
That in stopping a good deal of the pain meds, starting with the methadone? It does nothing for RSD, and I think that there's one simple way to tell the difference between
That I took the puny dose, got no benefit-that genetic testing on a family member took place during that time, that it was paid for out of his pocket-with an upcoming surgery not just for me, but also for him, and his being even more extensive, and equally necessary, so we both thought. Mine I obviously regret.
But in the 3 years since, I can assure you that Stage Four?
Is alive and well. Mine is a result of poor and further deteriorating healthcare availability resulting in my own decision to move all of it to a neighboring county and access the area's teaching hospital. That at this point, I would not set foot-or wheel-into a single medical facility in this county at this point, critically ill? Transport me by helicopter to the trauma center then folks, because as long as I am upset enough by what I saw today-I elect not to share the depravity of a female security guard with a boundary problem and probably a few mental ones-that when I worked ED fifteen years ago, that she by the employer I worked for in Eastern Washington-none of them really in the three jobs over seven years (everyone needs change, I certainly did), and that what drove me out of nursing, and with a friend in 2006, we mailed our licenses as providers back to the Board of Nursing with letters we co-wrote telling them the reasons.
It's called lab testing. From the proper folks, not only is the medication for me, more effective, but their staff has their own background. And listening to what they say?
Has always proved to be a good plan.
And honestly it's nice to think clearly, not be loaded up on a lot of medicines that many take to offset how tired-or that tremor that some meds give people? I may have some atrophy in my hands despite the constant activity I keep going from waking up to falling asleep-but it also helps as progression has I feel beel slowed some, so with CNS disorders, you are affecting the entire body-by definitaion I think.
In trauma, the brain shutting down or the brain stem herniation that began I later learned, that necessitated a neurosurgeon taking a huge risk in the 1983 brain injury I wound up with: and in the middle of the PICU on an 8 year old? Saved my life. That it was at the very same training hospital that I had been born across town at the University Hospital that took me straight to the NICU?
Sure, I was a preemie myself, but not by much, at 34 weeks, these days-it's not uncommon for them to set a weight goal after the first day and usually it's 4-5 pounds. Raising kids who were both preemies but only one as my own? Making sacrifices of my own to get an education no matter what but that as I did, I also was working, and at the same time-learning.
But that prevention was the best route, and that most surgeons then thought nothing of reaching up and grabbing your galbladder to prevent you from needing surgery even. That surgeons would wait for what seemed like forever before operating and now you are on the table before you know what's happened, it's over? It's not always such a great thing.
That lengthy recoveries I have had-hospital stay-wise, I have had nothing under 5 days even in the last 2 years, but that the care is non-existant and in the region I live in short-stays are so common, that it may as well all be outpatient?
That a basic level of care was expected of me as an RN as well-that if a MA even presented themselves as a nurse, which often was a frequent error, a huge difference exists no matter what the situation is. Ten months, maybe, but many years working also can provide one, if they make notes, I guess-whether a mental or written, being visual-it's why entries are commonly set with a thought. That prevention used to be the name of the game, so to speak. That my Part C carrier had a wonderful online health-related program where you earned points for recording things like physical activity-and operating yes, on a certain level of honesty on the part of the recipient, it was limited to once a year.
What a great goal though. And teaching people that yes-keeping track is important too. That their physicans could be provided with daily notes-reflecting how you felt overall.
Not only keeping track of pain levels, for example. I have seen myself get hyper-focused. With such major complications-the reason people have become chronically ill-probably lack of prevention. The program was shut down for Medicare recipients-guidelines prevent them from giving anything. But that they took a penalty for having it?
I know it made a difference, but now having changed the cooking, the way I even see food? We
Infections, skin breakdown, sores, swelling, folks, this kind of complexity I admittedly had no business fooling around. And seeing a pain doc who was in over his head. Very. And had an ARNP who clearly did not know what boundaries are.ri
When you are in need of what they have, and you are unable to beat the system? For further understanding, see a page I have established, mostly to keep what is personal shared with friends so their concern can be addressed, and they too can comment if they wish to.
You join it. A teaching hospital ensures that a faculty doctor will likely rubber stamp the RSD since the effects on the lower body are clear, some in my hands but so long as I can type, silent I won't be
And obamacare? I guess this page speaks to the sad fact that if you are on public assistance, few places are in existance that you will get proper care. I recommend reading my blog-but answers are one thing I doion't have.
Save to say that you really need expertise-does saying you are an expert in RSD/CRPS make you one? Not ever. Taking the Hippocratic Oath out of a medical education has always been as much of a mistake as allowing a computer in the exam room.
It is a barrier of another kind. But there is more.
It's been my own journey mostly.
And also on a more personal note, what has lead me to more carefully examine why the doctor-patient relationship can fail.
My own experience is:
- Loss of trust, on both parts-some providers, especially in pain management sometimes have to givve bad news, and some do not take it well, and at times if you see healthcare not as getting basic needs met, but as also being allowed to ask for help? The relationship is already in peril, and looking elsewhere well, I would advise it.
- Lack of knowledge really? On both parts
- Inaccurate information conveyed to a provider by a third party-and in spite of HIPAA, when it's those closest to you-a provider can either ask you for the truth-or continue living a lie. Sometimes it's easier as we all know to believe the worst about a person than to find out the system has repeatedly failed your patient.
- Lack of compassion
- Taking the Hippocratic Oath out of the Medical Education. I think it creates more hypocrisy.
- Doctors practicing medicine from what is basically a cheap or free download to an Ipad, Blackberry, iPhone, or Android device. I cannot myself think of a worse thing to bring into an exam room. That they have a very highly developed camera on them, that despite that no pictures are taken that I am aware of the thought that it would be easy to get shots-but that likely some probably are gives me a sick feeling.
- That medical students have been given courses on basically how to "get rid of" what they consider a problem. A friend of mine has just finished-or is still yet finishing, but at 62, she has earned a right to slow down some, and basically an opthamologist refused to take her on as a patient despite a family member who has a position in the medical community of her city, and he told her that despite the fact she has excellent insurance, "too many problems," as the reason she was given for her own denial of care.
- That medicines in order to be prescribed require now that you are seen every 30 days, and in a catastrophic illness, be it RSD, be it anything from lupus to cancer-that the medical community has banded with the goverrnment?
- Micromanagment of healthcare
- Prescription drug abuse-and largely patients are not the only ones. Ever watch the program "House"?
- Forgetting that use of prescription medication by some patients is taken seriously-but that many with chronic pain, well, we are denied medications at times for our own protection-you do need them to work when well-you reach that "point" and the unknown of not knowing when it is-kind of demands that one is using them with a great deal of caution.
- denial
- Abuse of the system of healthcare to meet some other kind of need. This would be in some cases of very serious illnesses of other kinds.
- Mental health disorders-this is a crucial area to be honest about-having a mental health diagnosis does not necessarily make a person "crazy." I would be surprised, if not concerned, if a period of adjustment had not taken place when the latest and most recent insanity in my own life has taken place. And having simply stated, members of my own family who refuse to admit even that a period of depression, a degree of memory problems as a person ages-and that in PTSD? Some issues are to be brought to light by the patient. Well meaning or not, scratching at a wound, albeit an old one is well, not always helpful and can make matters worse-getting permission is generally a good idea. People will discuss matters on their own eventually that they feel is causing a problem-pushing what another thinks can be a sick level of creulty that I wish upon no one.
Speaks to why the obamacare mess, and in part is responsible for my own difficulties retaining care, however, that recently moving my care in one final fell swoop to the local teaching hospital has helped immensely.
And that a second year resident listened so incredibly well. That I left my jacket in the exam room, and she saw it, and caught me at the elevator and gave it back-I looked at my caregiveer, and said, "The last place I was at, it would have been thrown in the lost and found and I either would be buying a new one, or I would be out of luck without a lot of trouble"
That it happens daily and to people like myself who can ill-afford a new coat at the drop because of what amounts to laziness? And that complacency is really at the center of what I believe to be the core of what lies in the center of events that I feel have taken place for a reason.
People don't like huge changes. It happens to hurt-and growing pains are no exception.
That the oral surgery I desperately need now? It may finally be within grasp. And a simple matter of asking for a referral. I consider myself very fortunately that I found a GI doctor willing to tell me to wise up and do what I have. When a system has told you to fly a kite? You record the call, store it if you have to-but keep it for when it rains.
And I live in the Pacific Northwest?
When you cannot beat the system, you join it.
It may not be much, and an old photo-the building has been remodeled and updated.
Education is well funded. And being a teaching case? Well, it has it's perks. You get to talk and well, it's sort of in a way: required that they listen.
You teach them to keep listening-I have much to say to them. I hope they do-because their sister hospital-one they own and care about the reputation of? Turned me away on oral surgery 3 times.
ME?
Complexity factor.
And never quit.
No comments:
Post a Comment