But Really, It’s For Your Own Good…

Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?

Right?

10 Comments

  1. *hugs* I am so sorry that this is happening to you and I wish I could help.

  2. i’m told that it’s perfectly within the scope of medical ethics to not treat pain if it’s chronic. acute pain would get treated; chronic, no.

    the really fun part is the person telling me this is my new pain management doc. and oh my fuck the panic about seeming like i’m drug-seeking. fucking hate physicians, OYD. i really really do.

  3. Stabbity rage on your behalf 🙁 (And on k0s.)

    Why are there so many TERRIBLE DOCTORS? The nurse practitioner at the new non-pediatrician place I’m going basically called me a hypochondriac for writing out a list of my symptoms so I wouldn’t forget to mention any. (And said that by looking up what might cause the symptoms and making a note of that too, I was IDENTIFYING WITH DISEASE and this would give me somatic symptoms.)

  4. I can’t imagine why it’s not against medical ethics to refuse to treat chronic pain as it can be terribly disabling — I know of people with illnesses like RSD/CRPS and M.E. who would be doubled up in agony without pain relief (in many cases, morphine delivered with a syringe driver).

    Your last paragraph (about notes signed by doctors who’ve never met the patient) reminded me of the two psychiatrists who, two decades after an outbreak of enteroviral M.E. in a London hospital, published a paper claiming the disease was nothing but hysteria, which became the basis for all the “all in the mind” nonsense which left a huge trail of devastated lives from the 1980s onwards, and the two men never met a single one of the patients although several of them were still alive (and still ill).

  5. I am so sorry that you are going through this. It’s so terribly unjust.

  6. Shannon Hascall-Reyes

    I can’t believe this, big sis! Doctors are supposed to take a hipocratic oath to try to diagnose and help people in any way they can–they aren’t supposed to make judgements on a person.

    But this isn’t a perfect world. And there will always be ridiculous, stupid doctors out there who think they know best. Lemme tell you. I shoulda become a doctor instead…

  7. D’: is all I can really say.
    How horrible.

  8. I am so ANGRY on your behalf. If I had written this post, I think every other word would have been “fuck,” in caps.

    As someone who also lives with disabling chronic pain, reading these stories causes me a combination of rage, fear, and sadness.

    I am so so so so lucky that I have my two main docs now who have known me so long (one 10 years, one 15) and who try their best to treat my pain, after I tried to go to “pain specialists” and was treated as either a criminial or “crazy.” (“Have you tried relaxing? Deep breathing? Exercise? Tell me all the intimate personal details of your entire life so I can figure out why you *think* you’re in pain.”)

    But at the beginning of my relationship with my now 10-year-doc, a (now former) “friend” stole most of my meds for recreational purposes, and my doc wouldn’t refill. That was a panicky time. I’m so sorry you have to go through this. It’s such bull!

  9. I’m dealing with some back pain issues that are usually written off as anxiety. There’s probably an extent to which that’s true, but that doesn’t mean it’s quite that simple. Even if it were, I don’t see how dealing clinic that can’t seem to get prescriptions filled in less than 5 days is supposed to help that. Hell, not that long ago, they kept me waiting for two weeks waiting for antidepressants. Seriously. Fortunately, I was on top of that and had a week’s worth before I submitted the refill request and the pharmacy was nice enough to loan me pills until that got sorted out. The problem is, the pharmacy has strict rules about what they will and won’t loan like that so I’ve been stuck for four days without muscle relaxers and naturally, the stress has caused me to tense up pretty bad. I nagged them twice last week, but the clinic is part of a chain that has a convoluted phone system and I think I’ve talked to an actual person all of one time. Generally, I get a call back, but I wasn’t so lucky now.

    Somebody’s getting an earful on Monday.

  10. I wish there was anyone in the political scheme who seemed to want to make it easier to get medications. Instead it keeps getting harder, with more hurdles put in place. Maybe if they called them “pain relief” instead of “controlled substances” doctors would remember what these are for in the first place.