Tag Archives: stigma

Cease and Desist Letter Sent To Emory Healthcare

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Blue Medical Scales of Justice

I found out that mercifully Dr. V had written the order for the IV Saline and faxed it over to my new primary care physician (outside of Emory), but apparently the new PCP needed her to do a physical examination. We’d had so much piled up from Dr. V’s 3 months away that there wouldn’t have been time for that even if we’d known it were needed, but I had no idea. It wasn’t until a nurse responded to me on the Patient Portal that I knew there was any hold-up.

On Thursday, June 16th I attempted to set up my next follow-up appointment, and was thwarted from doing so because of the block Emory’s Chief Medical Officer had placed on my account. Yesterday (Friday) I tried again after leaving a verbal message of Patient Relations’ voicemail that Emory was violating Federal Civil Rights Non-descrimination laws, and that they need to remove the block on my account immediately. I received no response Thursday, nor Friday, and on Friday when I again attempted to schedule an appointment with Dr. V for sometime in the last two weeks of June or for once I’d have returned home from Cleveland Clinic and UF from the two specialists in mid to late July, I found that the block was still in place. Today I decided to submit a cease and desist letter via Emory Healthcare’s Patient Relations Department on Emory’s website. Here it is below; 

Letter to Patient Relations Sent Saturday, June 18th Via Emory’s Web-form

 I called Patient Relations and got only a voicemail at your phone number (I believe it was on June 16th around noon) at (404) 778-3539. I left a message regarding the fact that Administration, (specifically P. Z. C., MD) has issued a block on my ability to schedule future appointments with any of my doctors at Emory. A licensed physician who does such a thing, superseding and thwarting care by a patients’ own physicians is violating the Hippocratic Oath by maliciously standing in the way and creating barriers to access when the patient is in need of medical care.

 Because of her actions I was denied care for a severe urinary tract infection at Emory Gynecology when I attempted to set up an appointment with my established doctor there. A nurse by the name of M. (at Emory St. Joseph’s Clinic which had the earliest available Gynecology clinic appointment) called me back to inform me I had been “dismissed from the clinic” and rudely talked over me, stating I’d have to go someplace else. When I informed her that refusing care by a non-profit organization is a violation of federal law she yelled into the phone that I’d have to go somewhere else, and then hung up on me.

 I believe this is the same M. that is a nurse of my former primary care physician at Emory St. Joseph’s Clinic, but in Primary Care. The Clinic I was trying to get an appointment with was Gynecology so I do not know why a nurse from Primary Care was calling me.

 Gynecology could not call in the needed antibiotics without seeing me first, so I had to make cold calls to outside physicians on the spur of the moment in order to catch it in time and even then it took all of 14 days to clear it up. I have chronic susceptibility to e-coli infections of the urinary tract. If a mobile physician group had not stepped in to write the prescription for Cipro ASAP I would most likely have had to go to the ER because it was already beginning to affect me systemically. Being an OBGYN herself I am sure Dr. C. is aware of the effect untreated e-coli has on the human body.

 I informed Patient Relations that this is against federal law and that therefore this block must be removed immediately or the corporation risks federal discrimination charges. My call was not returned by the end of business that day nor the next full day (Friday, June 17th). On the 17th I again attempted to schedule my follow-up with my neurologist at the Executive Park location who fully intends to help me and wants to see me on an ongoing basis. She has been away on maternity leave and there was alot that was backed up needing to catch up on when I saw her last on June 3rd and she needs to examine me to start certain services I need. Although I am scheduled to see some out of town sub-specialists I still want and need to keep her as my local neurologist.

 Such decisions should be between me and my doctor and therefore Administration needs to stay the hell out of my confidential relationship with my doctor. I do not know this corporate executive Chief Medical Officer and although she might be a physician she does not have the standing to make medical decisions above the heads of me and the doctors that I choose to enter into a doctor/patient relationship with. This is a malicious and retaliatory act on the part of Administration to prevent me from proving my condition and setting the record straight. Their actions show clear-cut manipulation of my care and an attempt to prevent my obtaining the true diagnosis of my disease-process.

 Retaliation for filing a grievance is an added violation under federal law from which no Emory regulation will provide them immunity. The further they push this agenda the more violations they’ll accrue.

 I don’t know if certain petty individuals consider this their idea of fun or what, but it is a very dangerous game they’re playing, I do not find it amusing and I intend to defend my civil rights to the fullest extent of the law, as a patient with several already established serious autoimmune diseases, I consider their acts of obstruction, patient-dumping, and medical neglect as a corporation a threat upon my life.

 In addition to having the ban lifted, I would like to know exactly who initiated it, why, and how this top executive was brought in.

 This harassment of me has gone on since December when I was abused in the Emergency room and reported it, and it is very clear now that the corporation is attempting to dispense with me as a way to further cover it up.

 Obviously, the corporation is corrupt all the way to the top brass and uses strong-arm tactics to silence those who speak honestly about incidents such as what happened to me (and it is a matter of public record that they’ve resorted to dirty tricks against their own former employees whom have had the courage to stand up and become whistleblowers to report corporate corruption when they saw it at Emory).

 When sending a man to scare and beat me into submission didn’t shut me up, they decided to resort to kicking me out.

 Clearly they underestimate a woman fighting for her life. Given my advocacy background it would be in their best interest for them to cease and desist any further interference with my medical testing and treatment, get out of the way and allow me to pursue my medical care in peace with those doctors with whom I have a good rapport; with those whom genuinely want to help me, whose motives are pure and are in the field of medicine for compassionate reasons.

 I do not bother anybody who doesn’t attack me first, and I am only interested in justice, maintaining my freedom to choose my medical relationships, to obtain my care in a timely, respectful, and compassionate manner, to be allowed to give honest feedback without fear of reprisal, and to be afforded my civil rights to healthcare without interference and impedance, my care plan determined jointly between me and the doctors of my choosing without any sort of conflict-of-interest, pressure or duress from “above”.

 There is absolutely nothing unreasonable about that “expectation” and nothing that justifies my being blocked from scheduling appointments at Emory Healthcare nor anyplace else.

 I am writing you on Saturday, June 18th and I look forward to hearing from you on Monday, June 20th that the block has been lifted and that I can resume scheduling appointments with doctors I wish to continue working with.

Pippit Carlington

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The letter was submitted at 6: 55 PM, Saturday, June 18th, 2016. I hope this will get through to them that I am serious and that they need to stop these vicious and irresponsible games. What I’ve been subjected to over the past 7 months is institutional bullying and I don’t take that sort of cruelty lying down. If this corporation intends to kill me either actively or passively it will continue to be documented in as close to real time as possible and sooner or later they will be caught and the full weight of the law will come down on them.

Just as Administration is watching this blog, so are others whose job it is to protect patients like me, and I’m sure that I’m not the only patient this type of thing has happened to at Emory. It may be that I’m the first patient to make it public, but a good background search will reveal that Emory has a long and sordid pattern of vicious and underhanded attacks against dissenters, and of discriminatory practices (mostly on the University side), but there have been documented incidents of corruption starting with antisemitism, and others ranging from research study manipulation and NIH funding fraud to Medicare/Medicaid billing fraud some of which included double-dipping; billing Medicare and Medicaid for services which had already been paid for with research funding.

In each of these cases the entity sought to discredit the whistleblower who had exposed the particular malfeasance by exploiting whatever vulnerability in that individual they could, be it their work reputation, going after their medical license with lies about them, assassinating the person’s character, and/or painting them as mentally ill.

Dr.Charles Nemeroff, a psychopharmacologist and former head of Emory’s Dept. of Psychiatry who is mentioned in numerous reliable media source’s articles and investigative reports as having committed research and medical journal publishing fraud and that he was in bed with major pharmaceutical companies and getting promotional funding from them while employed by (and with the blessing of) Emory. He also falsified safety claims on Abilify stating it was safe when in fact it was causing Tardive Dyskinesia.

Nemeroff himself conducted some of those psychiatric evaluations on whistleblowers, (proving my point that Emory does have unofficial hatchet-men to do their dirty work for them in order to cover up their corrupt practices).

After leaving Emory and Georgia in disgrace, Dr. Nemeroff went on to become employed at University of Miami and officials there seemed strangely unconcerned about hiring somebody who had committed illegal and unethical acts in the process of his career activities.

Apparently the reason for this nonchalance according to the Chronical for Higher Learning was that NIMH Director Thomas Insel owed Nemeroff for a favor he’d done for him when he’d lost his position and put in a word for him with Pascal Goldschmidt, MD, UM’s Medical School Dean, convincing him that the benefits in the man’s skill at fundraising outweighed the risk he carried. Meanwhile Insel quietly revised the NIMH conflict-of-interest regulations, and Nemeroff sits on two advisory boards that decide or influence which scientists get research funding.

Nemeroff’s current department is back in the Medicaid business overseeing a multi-million dollar contract which oversees 900 providers 30 hospitals, and 100 CMHCs (Community Mental Health Centers) trusting him with state funding again even after his HHS/CMS violations here in Georgia. While Nemeroff sits on easy street the whistleblower has spent years of his life fending off numerous frivolous legal challenges thrown at him by a judge who was in Emory’s pocket, unfairly placing a gag order on him while not evenly applying the same constraints on Emory whose various officials have given a number of media interviews about theirs and Nemeroff’s side of the story.

Emory holds a tremendous amount of power in Atlanta and throughout the state of Georgia so it’s no wonder that its top-level executives feel they’re above the law. It’s bad enough that they feel free to tamper with research and NIH/NIMH funding and go after people to cover up the skeletons in their closet, but the epitome of low-down and dirty that they’d resort to such tactics against patients! To attack a patient may prove to be their undoing. That is a bridge too far. Here’s one porcupine they’d best leave alone. I’m sure this is just the tip of the iceberg.

 

Emory Patient Banned for Giving Negative Feedback

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“Please accept this letter as a formal notification to you that all the physicians at Emory Clinic are formally withdrawing from your care. We wish to terminate the physician/patient relationship that has been established because we are unable to meet your expectations.”

Emory Chief Medical Officer - Letter Banning Me Dated April 19th 2016

As I awaited Dr. V’s return from maternity leave it seemed like an eternity. The Dysautonomia continued to spiral out of control and still no treatment for it seemed forthcoming. My digestive tract took turns with my blood pressure and heart rate wreaking havoc on my body. The weight-loss continued, and my hair began falling out. I found it in my bedsheets, on my clothes, on the floor, in the bathtub and it even fell into my food during those periods when I could eat. The Patient Portal had grown eerily silent, and though I occasionally left symptom updates for Dr. V’s Nurse Practitioner it seemed almost as though the conversation had gone cold and for a time I wondered whether anyone was reading (except for Administration whose new pastime seemed to be keeping tabs on me). It became evident that nobody was going to fill in for Dr. V to write orders in her absence and to this day I don’t know why, nor could I get a straight answer to this question when I directly asked staff. I figured why waste all this time for the 3 months she was away when we could be actively working on the problem.

The Nurse Practitioner eventually told me she was forwarding my correspondence to Dr. V at home and that was some consolation. It turned out Dr. V was in agreement with my getting back on IV saline given the fact that there was not a whole lot else to be done about it other than to load me up on beta blockers which neither she nor I wanted. Even so, she held off on writing the order herself while she was home and nobody else wrote it either.

The Gastroenterologist, Dr. J.M. was reluctant to venture into that territory, viewing it as the job of Neurology, and though she was cordial enough she seemed to be very traditional and more in favor of treating the GI symptoms individually with a pill for each one. She did do a couple tests though, so it was a start. Other than the waxing and waning of my symptoms punctuated by several acute crises of near syncope, nausea, headache, and vomiting, everything else for awhile anyway was uneventful and I was grateful for that.

I thought maybe finally Administration had turned their attention to other matters,  but no such luck. Just when I thought it might be safe to go on with my life and my medical care and that maybe things would eventually iron themselves out I received a certified letter, then soon after, another copy of the same one in my mailbox with the dreaded logo on the left-hand corner in that severe, bold font in dark denim blue. I wondered what fresh hell they were cooking up this time and all the while hoped it was good news, but when I opened it, the audacity hit me full in the face like a mean left hook. It was an official letter from Emory’s Chief Medical Officer (not the male I’d been told held that position several months ago but this time, a woman whose name was unfamiliar). This was not long after I’d received the report from Patient Relations merely parroting Dr. B’s response and that of his direct supervisor who had not returned my call as she’d promised during the time before Dr. B officially bowed out. I’d called to follow up with Patient Relations and got their voicemail so I’d left a message telling them I was still sick and asked what exactly Emory was planning to do about that. For weeks I’d received no response. Although  irritating I wasn’t surprised considering how useless their “investigations” had been before. It now seemed clear that the letter was meant to act as a response, but instead of offering some sort of olive branch, concession, or compromise to come to some positive resolution the content of the letter pushed further in the opposite direction upping the ante from the once rather off-hand suggestion that I could always choose to go someplace else if I was dissatisfied to now directly telling me I was being kicked out by the Royal WE which was the entirety of Emory Healthcare. This is something that they don’t legally have the right to do because they’re considered a non-profit organization and the conditions under which they receive federal funding dictate that they cannot discriminate nor refuse treatment to patients who come to them asking for an appointment.  The doctors employed by Emory although technically employees are individuals, and some are better than others.

I have never maintained that every single one of them is crappy and I made that very clear to Patient Relations. I give credit where credit is due and I don’t blame those doctors who are genuinely trying to help for the shenanigans perpetrated by certain other individuals who choose to continue to exercise poor judgment or engage in malicious acts against me.

Despite the vicious nature of the corporate entity there are some good and caring doctors there and it is unfair for some corporate mouthpiece to be so presumptuous as to say she speaks for them. I’m sure that there are many doctors whom would blanch if they only knew how unethical those in the ivory tower behaved, and some might even decide they didn’t want to work for such an evil empire that so callously dismisses patients still needing care.

Hypocritically, Emory spends probably millions (possibly even billions of dollars) on patient satisfaction surveys, yet when a patient gives honest feedback that is negative about an experience there they are personally attacked. This information should be used to improve the system, not used against the patient, and nearly all federal civil rights laws have a requirement that the claimant not be retaliated against for filing a grievance, yet this is exactly what has been done to me.

If I were one of the decision-makers at Emory I would take that money currently spent on surveys that are used just to pump up their false image and all the new buildings being erected around town and put it towards hiring more doctors. More buildings will not make Emory better, that depends on the people in charge and it is incumbent upon them to earn the reputation they so badly want. More buildings cost money and it is highly likely that the care each patient receives will suffer and more rationing will result.

Not long after I had my colonoscopy I developed a horrible urinary tract infection and needed to call the Gynecology clinic to make an appointment since it had been awhile since the doctor there T.M. had seen me in the office, so although it was obviously e-coli she could not just call in a prescription before seeing me to culture it and make sure she was giving the right antibiotic. As it turned out, she had no openings for about 2 weeks and this thing was growing like a weed by the day, so it needed to be taken care of within the next day or two or I was going to end up back in the emergency room. That was how serious an infection I had! The weekend was quickly approaching and I wasn’t looking forward to being stuck with it until the following Monday. The call center informed me that they did have an opening at Emory St. Joseph’s location, but when the representative attempted to schedule me she kept on running into a wall.  

“This thing won’t let me advance to the next screen,” she said. “I’m getting a full stop!” I asked if the system were down and she said no, but she wasn’t sure why it wasn’t working now but thought it was a temporary malfunction. I told her in the meantime to have a nurse call me.

Not long afterwards I received a phone call from a nurse, M. whom it didn’t dawn on me until halfway through the conversation was Dr. B’s nurse. I wondered why his nurse in Primary Care would be calling when I had been trying to get an appointment with Gynecology, not her clinic. She told me “You’ve been dismissed from the clinic.” I calmly told her that they could not legally deny me treatment, that it was against Federal law, to which she got very nasty. This was odd that she would seem to have a dog in the fight, but then it suddenly occurred to me that most likely it had been she who had initiated the ban in the first place as revenge for my clearing the air with Dr. B. on the Patient Portal. Obviously there was gossip taking place behind the scenes (more unprofessional behavior than I’d known). Dr. B. was a big boy and it was petty that this woman was fighting his battles for him. She raised her voice, talking over me rudely, telling me I’d have to go somewhere else.  

“Where exactly do you suggest I go on a Thursday afternoon?” I asked.

“I don’t know, you’ll just have to go somewhere else.”

” That is illegal” I reiterated. “Emory Clinics get federal funding so you have to accept patients who wish to make an appointment. You cannot discriminate or cherry-pick. I’m an established patient with this doctor and have been for several years”.

“Go someplace else!” She yelled into the phone and hung up. I called the call center immediately and reported what had just happened. A young woman in the call center apologized and said that I shouldn’t have been treated that way and gave me the name of a man who was the supervisor there and said she’d leave a message for him to call me, but he never did.

By the skin of my teeth I was able to get help from a mobile primary care service. Initially they were going to try to get home healthcare out here to get a urine sample to culture but that fell through and we found out that they didn’t do that kind of thing, so a Nurse Practitioner from the mobile service took mercy on me as she too was concerned about my having to wait through the weekend because of the severity of the infection. She called in a prescription for 14 days of Cipro. It turned out I needed all 14 days because the infection was pretty entrenched! Clearly my immune system is compromised, as it seemed to have sprung up overnight and became full-blown faster than normal and was affecting me systemically by the time Friday rolled around. Once I got the antibiotic it took awhile before I noticed feeling any better although slowly but surely the infection started to abate.

I looked up information on this Chief Medical Officer and discovered ironically that she’s an OBGYN herself! Surely she knows what untreated e-coli infection does to the human body, especially to someone chronically ill who is immune compromised. She should be ashamed of herself! What doctor with any sense of ethics does that! She needs to remove the block from my account immediately!

Then a few weeks later I began feeling severely faint and nauseated and ended up in the ER again. The ER doctor at St. Joseph’s wanted me to follow up with my Cardiologist in just a few days but he had no openings until July, so I searched out a Primary Care doctor and luckily was able to get an appointment sooner. She seems very nice and was open to my starting back on IV Saline infusion and was willing to order it but wanted my neurologist to fax her something saying she was OK with it first. She also thought I should see an endocrinologist as she said that there are certain endocrine problems that can cause Dysautonomia.

Dr. V. returned to work and I saw her on June 3rd. We had a long conversation and I told her everything that has happened and she was very understanding. I detected none of the pushiness I’d seen in the first appointment. I thought maybe she was feeling under pressure knowing she’d be giving birth any time, so maybe what I saw the first time wasn’t her usual personality. During this second appointment she seemed very warm and caring and I could tell she really felt for what I’ve been going through and wanted to set the record straight. She is in total support of my having these out of town evaluations and said that Emory is woefully lacking in the right equipment to do this type of autonomic testing. She told me she wanted to know how the two upcoming appointments with the specialists go. Then she ordered a number of blood tests related to various endocrine things to give the endocrinologist a head-start and one or two tests that could be done at their lab on mold. I left there feeling a sense of renewed hope, but then I got home and found that I couldn’t set up the next follow-up appointment with her. I finally have a neurologist who is invested in me and I want to continue seeing her, and make no mistake about it I intend to fight to do so.

 

 

A Strange Irony

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Things have become increasingly precarious as time goes on. I am used to spending time alone and often prefer it but it doesn’t really hit me how alone I am until I find out I need help with certain things and can’t obtain it, yet can’t do certain functions myself either. Then all of a sudden it hits me that there’s nobody there but me, at least noone reliable. With my body becoming less and less reliable that is really becoming a problem.

The past few days have been unbearable with the dysautonomic symptoms out of control and nothing I can really do to stop them. The near fainting spells wake me up from sleep and along with them comes heart arrhythmia; my heart pauses and then beats weakly with a faltering type of flutter. I feel so weak now and just want to rest. I’m finding now that my GI problems are becoming more baseline and that I can’t tolerate much by mouth except yogurt and applesauce. Last night the applesauce didn’t even sit as well in my stomach as it had just the day before. The previous day I’d tried making a rice bowl with cheese and some sour cream and some seasonings and ended up in bed on my side clutching my stomach. It felt as though by the next morning my food was still up in  my throat. It was not digesting.

Because of all the stomach upset I have not been able to take most of my medications. It’s harder and harder these days to take anything by mouth but my ice water.

I’m now running out of things I can eat in the house anyway and have neither the money nor the stamina to go out and get more from the store.

There was one person who shopped for me occasionally but he has dropped out of sight for weeks now and I’m not sure what has happened to him. The few people I know locally seem to always have tenuous phone and internet connections. They either don’t receive messages due to a technical problem or else their services are cut off on any particular month for non-payment.

Today I got word that my application for the Independent Care Waiver through medicaid was denied. The Reason? Because I am “wheelchair bound and have no circle of support” both things I have no control over. I wonder what kind of people came up with those harebrained regulations?

So if someone is in need, is disabled, with limited mobility and has no support then the response is you don’t give them support? How much logical sense does that make? 40 hours of service a week is sure better than nothing! I would take that if that’s all they can offer, but somehow my voice doesn’t count. This is another example of the patient’s needs being totally and arbitrarily disregarded.

Two more weeks to go before I find out about the other waiver. That one gives you less hours but doesn’t have the requirement that some person in the community sign a form, so we’ll see where that leads.

So nobody’s regularly checking on me locally now and things are worse than they were several weeks ago both in terms of people coming around and in terms of my health.

I have also been unable to reach my son. His new phone contract is now long distance if I call him but if he calls me it’s free to him, but I now get a generic voicemail when I leave a message. Emails have also been unsuccessful. They go through but no response.

I need somehow to reach my aunt to let her know that I will likely need someone to go with me to some of these out of town independent evaluations. She would probably want to know but I have heard nothing from my cousin for months now from her Facebook account who had said she’d contacted her and a few of her children after I got out of Piedmont.

As for making new connections, it’s a bit late for that. I’m not much more than a pet rock at this point, lying in bed only able to sit at my computer propped up on pillows. Honestly, who locally would want to know me? I’m sure they’d be bored after a few weeks at best. I can’t really go places, I have no money to go out to eat these days, and if I did the food would make me sicker. Then there’s the fact that my underlying disease is untreated and totally out of control and this makes me not the best company because I have to first focus on saving my own life on a daily basis. That doesn’t make room for much talk of everyday things that others take for granted and are part and parcel of most friendships.

On my better days I can talk about art and politics, and animals, and if I don’t have to talk I’d much rather hear about their lives than talk about my own as answering questions in itself has become taxing and painful, but my better days are getting fewer and fewer now.

Bills are falling by the wayside because my brain can’t hold any more than what’s right in front of me right now. Processing is at a slow crawl.

I find it hard to do much at all today besides making sure my glass of ice water has enough ice in it. Going to the kitchen even in the wheelchair is exhausting to go get more ice, but I hope I can continue to do at least that because I don’t want to be further dehydrated.

Beneath the surface I am grieving a life lost and the realization that my days are numbered. This is not some sort of depression but a coming to terms with what is, and what could never be despite all my efforts. I never wanted it to end this way, but at least if it has to be I will die at home with dignity. If I don’t make it through then perhaps they will find out what’s really wrong at autopsy and if it’s genetic as I suspect these results will be shared with my son so that maybe he won’t have to meet the same fate as he gets older.

As with any disease, early detection and treatment are key, even in those without a cure. If my story ends up a cautionary tale then my life will not completely have been in vain.

 

 

 

The Poisoned Pill; Chronic Illness/Disability Shaming as Cultural Norm

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Phrases and affirmations for and about the chronically ill or disabled can be healing or they can be insidiously hurtful. A recent video I watched about society’s shift in perception of the chronically ill got me thinking about just how we got here and provided some insight into those factors that have eroded empathy and created a cynical public perception of those whose illness or disability does not go away in an allotted “socially accepted” period of time. In the video The Slow Death of Compassion for the Chronically Ill a number of sociological factors are discussed which over time have affected how the general public views those who don’t “overcome” their disease or disability.

The media bombards us everyday with messages and stereotypes of people who have overcome and “beaten the odds” while the subtext beneath the surface suggests that those who don’t are somehow weak, not trying hard enough, not positive enough, or are undeserving of understanding and acceptance. The underlying message is that “if this worked for me it must work for you, and if it doesn’t then there’s something wrong with you!” This message is so woven into our culture that we may not even recognize it when we see it, and may pass it onto others without even knowing it.

Consider these phrases for a moment. When you really pay close attention how do they make you feel?

“It could be worse”

“Are you still in bed?”

“You just need to change your attitude“

“You need to change how you think about your disease”

“A pity party”

“wallowing“

“Move on“

“Suck it up“

“Don’t let it bother you”

“We can’t change what happens to us but we can change our reaction to it.”

“You’re doing it to yourself.”

“Complaining is only hurting you.”

“Just forgive.”

“Stop being so negative”

“You don’t look sick”

“You just need to exercise more.”

“Pain is unavoidable, suffering is optional“

“Don’t give illness your attention by repeating the story of it over and over again. Focus your attention on other positive areas and often illness will get the hint and go away.” J.J. Goldwag

I highlighted the key subtexts in red to signify that while these statements may appear on the surface to be supportive they in fact contain messages that undermine one’s sense of self-worth, leave the person feeling inadequate, wrong, or as though they brought the condition on themselves or are somehow to blame for it or are not doing their lives “right”.

These are words of judgment, not of support, and we  need to recognize what’s being passed along and the messages they contain which are toxic to others who are going through legitimately hard life circumstances. Platitudes are not what people need when in pain, when symptoms are at a fever pitch, and on those days when everything’s just too much. To family, friends, and supporters; Just giving the person a hug or acknowledging the validity of their struggle goes a long way. Don’t tell them to stop, because if they could they would. This is what they’re going through in real time.

There is no such thing as a good or bad way to feel about one’s illness or disability. Feelings just are and no they’re not like a water faucet. Only sociopaths can turn them off at will. For the rest of us we get over them when we get over them…in our own time-frame, and that’s OK.

Sometimes achieving a greater sense of peace requires better medical treatment for the condition and when the pain subsides the irritability or fear subsides. Sometimes other factors are keeping the person in a state of unrest and it won’t let up until those factors are ameliorated. Things are not always as simple as they appear.

Anybody who tries to tell you that you should just make up your mind “not to feel this way or that way” and tries to imply that when and how they think you should and if you can’t do that then you’re not good enough is not being truly supportive.

Anyone who tells you that you need to change to see or do things their way in order to be acceptable is not loving you unselfishly and they’re not valuing you for who you are. Your process is exactly that; yours. People need to respect that.

The image of the impenetrable stoic ill or disabled person is a hollywood image that no real person can ever live up to.

The person who never cries, never lets them see you sweat, never shows you their down days, the days when they can’t take it anymore, who only lives and speaks in positive affirmations, never gets irritated, never asks for anything, and never gets scared, and always gets things done yesterday simply doesn’t exist. Not being that completely mythical person doesn’t make you weak, it makes you strong because you’re authentic; not hiding behind a mask just to make those around you comfortable.

Sometimes it seems that being kind is a weakness, because of all the cruelty in this world. But being kind it's who you are and the people who love you, love you because you are you. Click on this image to see the biggest selection of life tips and positive quotes!:

Chronic illness and the societal expectations that go along with it are hard. Whether it takes you 1 day or 6 years to feel better it is not your fault. You’re doing the best you can with what you have to work with. Let them see the pain you live with because that’s the only way to make the invisible visible and believe it or not it helps all of us and helps the non-ill to understand and to develop empathy. This in turn will make the world a kinder and more compassionate place, not only for us but for the generations that come after.

The best gift we can give to others in this community of chronically ill/people with disabilities is not to pass on those harsh judgments and expectations we get from the rest of the community at large, not to project them onto our bothers and sisters, because to do so leaves others in a very desolate place and in the end hurts everyone.

There are those among us who are the soldiers in civilian life, those who live out loud in order to make things easier for the next chronically ill person or person with a disability. While the harder aspects of our private lives are not pretty these are individuals who sacrifice so that others who feel more comfortable playing it safe won’t have to. They are not complainers. You never know when you might receive a badly needed medication, service, test, or treatment because of the efforts of activists within this community.

On a personal note; I heard today from the nurse doing assessment for one of the Medicaid waiver programs and also got an unexpected phone call from a mobile doctor’s office affiliated with another program I’d applied for and both will be out tomorrow. It sounded as though there’s a possibility that the mobile doctor’s office could order the IV Saline treatment. I told the woman on the phone my situation about having gone untreated for the past 4 months and that I’m a little leery of doctors right now. Apparently there are two doctors, I believe, one African with a name that was nearly unpronounceable and one Hispanic, and several nurse practitioners working for the company which is a mom and pop operation. I didn’t even know there were places like this anymore that made house calls. The husband and wife owners are the ones coming out here around noon to get me established.

Today I’ve been having quite a bit of pain and pressure in my jaw. The TMJ seems to be getting worse, and so do the GI problems. Now it’s as much upper as lower GI upset. It’s taken all day before those died down enough to eat. I need to really have the Gastroenterologist to check me for Gastroparesis. More and more frequently my food is not digesting and instead sitting and fermenting in my stomach.

The Politics of Hate and Social Dawinism

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Padlocked

Maybe at some time in our evolution the Darwinian principle “survival of the fittest” made sense for the continuation of a strong gene pool, but as human beings in modern society we should be more evloved than that, yet it continues to permeate our culture, or work, our healthcare, and even our relationships and when we as humans no longer meet the criteria of viability we are discarded like yesterday’s garbage.

For those of us with severe chronic disease this baser nature in those around us can prove fatal, be it a spouse, a friend, a relative, even a doctor who has been charged with treating us for these conditions for a long time.

I found out yesterday that at some point my GP decided he didn’t like me, and I guess that makes my life worthless and my not being liked is punishable by death. The “pink slip” was coming. It was just a matter of time, I sensed, but nevertheless it hurt to know that he was just barely tolerating me for God knows what length of time.

Apparently the straw that really broke the camel’s back was the “tone” of my message, but I had reached the limit of my patience after so much mistreatment that I was one raw nerve, and after 3 months of being left to suffer I was like a tormented animal in a trap. It wouldn’t have mattered what I’d said, he didn’t want me as a patient and was just looking for the nearest trash can to throw me into.

Because he didn’t like me he was impervious to my pain, my near fainting spells, my unquenchable thirst, my need for home healthcare, and the worst thing of all is now I know without a doubt exactly why he didn’t like me. It in truth was not what I said, or really anything I’d done, but most of all my very failure to thrive and the secret I continue to keep to myself which is part of the reason why. I almost told him, but after the last appointment when it became clear he was being mean to me I knew that secret would only be used against me, so I thought better of it.

The evaluation for that unspoken thing is stalled, like most of the other independent evals; there’s a long wait. In this instance it’s Medicare holding it up; some arbitrary limit on the number of providers in the state of Georgia. It could be 6 months before I can fully make it official and safely disclose it to any of my doctors.

It is this very condition that Emory is really discriminating against that which makes so many others a target of bullying and abuse. This thing has no curb appeal when you’re no longer a cute 5-year old. Even so, one can only do what one can with the tools available and I have lacked all the supports and resources I’ve needed all my life in order to cope with all my disabilities much less this doozie, and I know in my heart I’ve done the best I could given the fact that I’ve had to do it alone. That is all anyone can really expect, but they don’t care. They expect more anyway. It is only when I’m backed into a corner that I become the hellcat only after having been way too patient and way more tolerant than anyone should have to. Why is it only me who should be tolerant?

He says he’ll be available only for emergencies, isn’t that a laugh. What good could he be as he has no admitting privileges and besides what’s been happening has been a slow emergency that festers and worsens with each passing day. It is in the emergencies that I’m most vulnerable and why would I trust myself in such a condition to someone who despises and in his heart wants to hurt me? Perhaps they (those in the ER) are lying in wait for me to hit the floor so that they can finish me off. I will not give them the satisfaction.

I wanted him to understand me but he didn’t want to. He’d already made up his mind and nothing I could say would ever change it. It was as though every atom and every cell within me was rotten in his eyes and there was nothing in it worth saving. With a double-bind like that it leaves you no hope.

He said that he was highly offended by my saying he wasn’t honest, but the truth is he wasn’t. On a very core level he didn’t like me but he pretended he did and he led me on to believe he would act in my best interest, but he didn’t. What is that other than dishonest? His actions gave him away. If you care about somebody you don’t just stand there and allow them to suffer.

Besides, it’s in the Hippocratic Oath; First Do No Harm. Doctors seem to think that there’s a loophole, that they can get away with it as long as it’s passive-aggressive, but the truth is that medical neglect is doing a patient harm! He’d have handled it better just to put me out of my misery than to subject me to this Chinese water torture of a death by a thousand cuts.

On yet another level, maybe it was too easy for him not to like me as a convenient excuse for poor judgment the cause of which was something even more disturbing. I have my suspicions because this is not the man I knew for the larger part of nearly 13 years. It seemed almost as though his soul had been taken over by someone else. The last sentence I wrote to him was that he must be going through something and that I hoped he got healing for whatever it is going on in his life that would cause him to do what he did.

Hopefully those whose job it is to hold him accountable will do that and not let him just pretend nothing’s wrong, as I do not believe this only affects me, but other patients now and in the future (if his superiors fail to insist he take care of his problem).

There are times when I truly wish I wouldn’t wake up the next morning. I’ve been able to sleep less and less the past few days, and last night I only slept in catnaps because the last thing I ate didn’t digest. I can feel it still sitting in my stomach, yet it has upset my whole GI tract from top to bottom. Also, I’ve been overheating almost continuously now with just short periods of normal temperature sensation and cold spells in-between. I feel like I am truly in hell. My autonomic nervous system has turned on me and I can’t make it stop. I need that saline ASAP!

As for the referrals to Vanderbilt and Undiagnosed Disease Network the only thing I can do now is to ask General Neurology to do them and hope some random person filling in for Dr. V will do it. Also, they need to get a message to her as to what’s happened. She won’t be back until May, but I think she sees through the bullshit going around and really might actually care (based on what the Nursing Supervisor said on the phone) and my being able to read people on multiple levels. Despite her being a bull in a china shop I could decipher something else; something underneath. It took awhile to fully process but nonetheless it was there and I knew she had no ill intent. That energy was very different from The Dark Man. My first reaction was not to like her because she forced herself onto me, but I read that it was not malicious like he had been, and that something underneath was good.

Maybe in her mind she was thinking she wanted to get it over with now because she knew she wouldn’t be here for several months to do the exam if she’d waited. It’s too bad that she didn’t get to read the films from Piedmont or the Gallium Scan herself. She sounded as though maybe she was better than some others at looking for Sarcoid lesions. If they are there and someone else misses them, then what will happen? Will they want to take the extra time and effort to be sure?

I was glad that Dr. B. didn’t try to touch me when I saw him the last time. I could read enough just in his body language and tone of voice to know he was not on my side. To read it in his touch would have been like being clubbed over the head with it.

On Monday when I go into General Neurology I may be a mess but at this point I don’t care. Maybe they need to see how it really is for me after I’ve been targeted so callously and viciously by the system that grinds people up and spits them out in the name of healthcare, how I’ve been left a mere shadow of my former self. In some distant corner of my being I remain strong even now. I’m trying to hang on to the shred of dignity that still remains.

People who haven’t experienced this cannot imagine what it’s like to be branded with such libel in their medical record and then told it will sit there for eternity assumed to be accurate even though it’s all lies because of “policy”. Imagine someone took a piece of shit and put it in your clothing and you had to wear it going around stinking for the rest of your life. It wasn’t a part of you yet anywhere you went people would assume it was.

And then to be sick on top of it and not treated feels like I’m being punished for something I didn’t even do wrong. All I did was ask for what I needed. All I did was stand up for myself.

All I can do with this awful feeling is sit here and lick my wounds at home at the moment. It is the weekend, and on top of that I really trust no one right now.

I’m still talking but I fear that might end soon. When it happens I can’t will my brain to do it. Sometimes it just happens for a few minutes when the stimulus is short-term, but when the stimulus is longer-term I have been known to go for days and even weeks.

On the practical side I have gathered the names of some attorneys who are in the right specialties to right the wrong and have emailed one of them. I hope someone will help soon. That stuff cannot stay there if I am to have a chance for the treatment I need.

 

 

Call To Action: Wronged at Emory? Contact Me

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If you have been discriminated against in your healthcare at Emory I would be very interested to hear your story, especially if you have had a bad experience in the ER there.

There is a particular practice referred to as “gaslighting” or “psych-shaming”; in effect calling you crazy and undermining your credibility which is particularly damaging to one’s reputation and it can have the effect of slowing down or stopping your testing and/or treatment for your very real medical condition! When this is entered in your chart (even if it is not an official diagnosis but implied) it can cast a shadow of doubt like a black cloud above your head anytime a doctor in or out of that system requests your records.

To those of you just tuning into this blog I’ll recap briefly; this happened to me at Emory’s main Campus’s ER on Clifton Rd. on December 3, 2015.

I was medically neglected for most of 9 hours while in the ER, then abused physically and psychologically by an on-call neurologist, Dr. P. R. M., and then defamatory verbiage was charted implying that I had some sort of mental illness and/or was “feigning” my condition. His resident a few minutes after leaving the room came back and plopped her butt down on my weaker left foot. (See my archived post The Dark Man to read the whole story).

This atrocity was a malicious form of organized bullying and exploitation and I strongly believe violates Federal anti-discrimination laws; Federal Hate Crime statutes, The Americans with Disabilities Act, and The Protection & Advocacy Act of 1986.

Just yesterday the “patient advocate” T. J.” who actually is internal (employed and paid by Emory) made a harassing call to my home in an attempt to shut me up. She informed me repeatedly that “no one will be calling you back” and implied during the call that she has been tampering and interfering with my right to seek redress from her superiors and others within administration to get the complaint properly resolved.

This too is a violation of Federal law. Retaliation and intimidation against a patient for filing a complaint is strictly prohibited and is an added violation. If she were a true advocate she would know that.

I was instrumental in writing the 5-organization contract in Georgia when the P&A Act was first passed and have had extensive training in both individual and systems advocacy, have worked alongside attorneys, and used to be paid to investigate abuse and neglect complaints from patients in a whole range of facilities.

My agency Alternative/Atlanta; Center for Patient Advocacy covered the metro-Atlanta area. Due to funding cuts the original contract was taken over entirely by the organization whose job it was to manage the funding and disburse it to the 5 organizations.

Advocacy is not like it used to be anymore, and sadly patients have suffered because the demand far exceeds the supply of good advocates. This was my line of work before I became too ill to do it fulltime and before Georgia lost most of its funding.

When I did this officially I advocated for my clients as though they were family. I worked late to make sure they got what they needed, was on call nights and weekends, and it was not uncommon to see me show up at a hospital to meet a patient who had been placed in restraints or who had been physically, emotionally, or even sometimes sexually abused by staff.

I understood that in order to properly advocate for a patient one has to look deeper than “he said, she said” and deciding whom to believe. There was never any question as to whose side I was on; the patients’! There were no divided loyalties or conflicts-of-interest and I pursued the course of action and outcome the patient wanted.

I also participated in annual reviews of all advocates nationwide by an independent evaluating agency, and my charting was deemed best in the country of all advocates employed by this Federal Protection and Advocacy system.

I had hoped to one day make a good living at it, as it has always been my passion to help those who need someone to stand up for them to level the playing field. I have a saying;

Old Advocates Never Die;

They Just Lose Their Funding!

Since my funding was cut I have continued to advocate wherever I saw a need, lending my skills on a volunteer basis to a variety of worthy causes. I believe I have been called to do this and that my life experience is in a sense a test-case which has led me to understand many different populations and their needs.

There is nothing more devastating than fighting for ones’ rights alone, but every cause worth fighting for has its true allies. One just needs to find where they are. I believe that very rarely is anything just an “isolated incident”. Most incidents are a microcosm dictated by pattern, and if you look beneath the surface you find what the pattern is and usually the motive as well.

For every complaint you officially get there are likely many more that never reached the official grievance stage for one reason or another. Patients are often too ill or too busy, or they are too upset by what has happened to them to go through all that’s involved in filing an official complaint, compiling the evidence, and following up (sometimes numerous times) to obtain the outcome. If the complaint is denied, then they are required to complete numerous other formal procedures, fill out forms, call and leave messages, and keep documentation of names, dates, places, and other events relevant to their grievance.

This is precisely why good advocates are needed, especially in instances in which the victim/survivor’s credibility is under attack.

All the self-advocacy in the world will not save you if at the very core those you go to for help do not believe you.

When authorities see one patient with a complaint they might not take it as seriously as when there are 5, 10, 50 or 100 such incidents because now we are talking about a pattern of conduct that raises the antennae of state and federal regulators on multiple levels.

Remember that even when things feel hopeless and you feel like the only one, most likely it’s not and you aren’t. There are people floating around, maybe closer than you realize who have been through something very similar. You just need to locate them, come together, and organize to affect social change!

Maybe you have had an experience at Emory in which you have been discriminated against in your healthcare because someone didn’t believe your symptoms were real, you may have been accused of “feigning” or making them up, “exaggerating”, being “dramatic”, being a “hypochondriac”. 

A doctor may have called your condition “functional”, “psychogenic”, “emotional”, “psychological”, “psychiatric”, or “Hysterical Conversion”, “Factitious Disorder”, “Somatoform Disorder” (see my earlier post The Dark Man).

Then you noticed a lack of concern from your treating professionals, their treating you as if you were a minor child and not respecting your boundaries or wishes (see Bull in a China Shop General Neurologist), irritation directed at you, your symptoms ignored or directly disregarded, and ultimately a slowdown or stoppage of care. (For examples of this see my blog post Not Being Believed).

The above terms are buzzwords that are designed with maximum shock value to sabotage a patient’s credibility and an implicit warning to doctors to steer clear.

Let’s just be honest; there is nothing helpful in charting such things about a patient and this can only indicate malicious intent. It is fear-mongering of the highest order and one of the most vindictive acts a doctor can level against a patient because its effects follow the patient long after the doctor is gone. Any seasoned investigator will recognize this immediately and people who work in the ER (if they are honest with you will know the subtext they imply).

If any of this sounds familiar to you please get in touch with me by posting on this blog in the comment box below and I will give you some ways that you can submit a signed statement to me about your experience. If you can also get the statement notarized then that’s even better than just your signature alone.

In my post Educating Doctors of the Future; Affliction as Strength you will read some cogent points arguing against the assertion made by doctors that a patient’s condition is “functional” or “psychogenic”.

I’ve included some links to articles written in peer reviewed medical journals that suggest that patients given this label even when it is given as an official diagnosis do in fact have a real neurological problem.

These citations will help you make your case should you decide to take legal action or even if all you want to do is to get your doctor to stop viewing you and treating you in this stigmatizing way. The post A Few Lateral Moves, but an Ace In The Hole provides you several avenues by which you can file external grievances such as with the Office of Civil Rights and Health And Human Services’ Secretary Silvia Burwell. These are the branches of government most powerful in righting these types of wrongs committed in healthcare settings.

If you are a news reporter and are interested in doing a print of TV story on this or an expose on a longer show, feel free to get in touch with me. I am ready and willing to do interviews and as time goes on there most likely will be others who would speak publicly about their similar experiences.

As Emory has been consistently refusing to take responsibility and to correct this problem I feel it’s imperative now to use all available platforms to exert pressure on the corporation to ensure that they put the best interest of patients first and to stop these unprofessional and corrupt practices. I will be drafting a press release shortly.

–> You can make a statement to The Powers That Be now <—to have legislation drafted that would stop and prevent this from happening to patients on a national level! Several of us organized and have created a petition which will address Institutional Bullying in Healthcare Settings as a unique and enforceable unlawful act treated as particularly heinous because of the extreme power differential between medical professionals and patients and the inherent vulnerability of those of us chronically ill/disabled.

We must rely on doctors to look out for our best interest when we’re ill at a time when we’re at our most vulnerable, and when they don’t they must be held accountable.

It’s only fair, so please sign the petition and add your personal account detailing what abusive/neglectful/reckless, or malicious behavior healthcare professionals and/or healthcare administrators have done to you where it says “Reasons for signing” below the body of the petition on Change.org, and be as precise as possible. Each signature and letter will be auto-forwarded by the site to Secretary Burwell for consideration by her committee and Congress as a whole.

Don’t let these unscrupulous people get away with this type of cruelty any longer! It’s time for the patients to rise up and insist that we be treated as valued customers with the authority to choose what happens to our own bodies, not treated as minor children, the “village idiot”, trouble-makers, nor common criminals for exercising that right!

 

Political Hot Potato; Is It All About The Money?

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It seems my case has been made into a political football, and the Dysautonomia, a hot potato. Although I do think some headway has been made it is far from over and there are still some elements that wish me harm who are trying as hard to have things not work out as I am trying to make things work out.

I don’t think my GP is going to treat me no matter how many diagnoses I get. Once I meet that bar I can pretty much bet he will produce another one. If obtaining a diagnosis were his intent then I truly believe he’d have been actively facilitating these independent evaluations.

Earlier today the woman answering the main switchboard informed me that my pulmonologist and GP were talking. I don’t know if it’s possible for my pulmonologist to talk sense into him and since by the end of business I’d heard no new news I had to conclude that any attempts must have fallen on deaf ears.

There is something going on that I’m not privy to, and probably neither is my pulmonologist; probably something of a systems nature and maybe Dr. B’s also burned out or has some personal problem he’s not willing to admit. None of this adds up. He himself has enough proof to diagnose me with the Dysautonomia 10 fold. They can sort out whether it’s Primary or Secondary later.

I can tell you that there are some political things going on behind the scenes that I’m becoming aware of now. I was informed today by the “patient advocate” who deals with main campus ER (and I use that “advocate” word loosely) that “nobody will call you back.”

She is making rude harassing and unsolicited calls to my house now to try and intimidate me because she knows she’s handled things very unethically and people are now aware of it. I don’t respond to threats and intimidation no matter how ill I get and this corruption will be rooted out. T. J. is no patient advocate. She is a wolf in sheep’s clothing. She’s most likely logging into the messages that come in and reading and violating patient confidentiality.

I’ve already caught the Head of ED doing exactly that. He’d admitted it in a letter he’d sent me in which he tried twisting around something I’d said in confidence to my GP on the Patient Portal. Since he did not treat me that is by Emory’s own regulations a violation of privacy!

There are some people at Emory who are not connected with T.J’s office that have not called me back today either, people who ordinarily would, so I wonder whether that has any connection to her. She implied in what she said to me by phone that she was messing around trying to block things she has no business blocking. Emory does not need to employ people like that.

I finally received the certified letter from Emory Medical Records. They have officially refused to even amend the ER record and are claiming it’s “correct and complete”. With a position like that these people are really throwing the dice that I’ll roll over! They clearly don’t know me. I’ll die before I ever let myself be defamed in such a malicious way. If they think this will run me out of town they have another thing coming. This is where I live and I’m going no damnwhere!

A woman fighting for her life is nothing to mess with. I have my warpaint on and I am ready for them! Clearly I have threatened to unearth something much bigger than my individual incident. Although I am not entirely sure what that is, I suspect the hospital may be hiding some malfeasance involving care rationing of low income patients. This is discrimination! Emory is a high volume hospital with a mix of patients from one end of the spectrum to the other. The only exception to this is that they don’t take totally uninsured patients and don’t write off charges.

As a high volume hospital they would have a vested interest in limiting time and resources given to low income patients while concentrating more time and resources on higher-income, better insured patients. They are not ethically supposed to do this, but it often happens in such health systems. People just don’t openly admit to it. If they receive Federal funding they can lose it if found to be discriminating based on income, disability, or any other minority status.

That could account for why when my disease accelerated my care did not also accelerate. One would think that care would be expedited to match need, but in an instance where there is care rationing it actually is just the opposite. That would also explain why my GP and several other doctors waited until I totally crashed in November and I had to make the decision to go to the ER. That way they incurred no costs and instead Piedmont admitted me (saving Emory even more money). Then 4 days after I was discharged from Piedmont too early I ended up at Emory’s ER and they found every possible way to cut costs on me.

* They put in an IV but didn’t use it for fluids even though it was indicated.

* They ordered but never offered nor gave me Maalox and Ibuprofen

* They ordered and offered only Valium (2 in a 9 hour period to be exact and I only accepted the first).

* They saved money for the hospital by not feeding me for 9 hours and only issuing 1 meal at the very end.

* Nursing care was minimal so they spent almost no time/money on that. I was mostly left unattended.

* They didn’t officially admit me other than moving me to their bridge unit for about an hour and I was discharged without an overnight stay.

* They had the ER doctors and the resident do a neuro exam on me (3 to be exact) which they figured they could bill for and gain a higher reimbursement rate because the skill level was higher than nursing. They had better not, but in case they do, Medicare might think something looks funny that 2 doctors felt the need to test my reflexes one right after the other (except that Macdonald came in to do it later). Overkill nonetheless!

Then after all that the 4 of them (Hudak included) couldn’t manage to put their microcephalic heads together and come up with a real diagnosis!

Yup! Sure looks like care rationing to me! You can bet that ER will get no more business from me no matter how sick I become! The other day when I almost fainted twice I could have gone 2 blocks down the street but refused! That’s how much I can’t stand that place.

I’m already working on a letter to Secretary of Health and Human Services Silvia Burwell to appeal Emory’s Dept. of Medical Records’ refusal even to amend my records from that awful ER experience and I will be asking for a full-scale investigation not only of the mishandling of my case but systemically. Some staff have shared with me that the ER has alot of complaints. While I’m at it I can have her check and see how many of T. J’s complaints are ruled “unfounded”, and how often records are not amended as requested. I’m sure that will be quite illuminating.

Tuesday I have an appointment with the Nurse Practitioner at General Neurology to go over various scans and come up with a “plan”. With all the internal politics going around this place I really feel uneasy about meeting total strangers at Emory and discussing my case. Piedmont was supposed to be FedExing a disc to them so that doctors there can read the films themselves but I was not able to reach a live person there in Piedmont Radiology. Nobody at Emory General Neurology got back to me today to confirm the shipment on their end as promised yesterday. Dirty tricks? One has to wonder.

I think it’s time to order some more CBD chocolate covered Pistachios and maybe other edibles, as it could be a while before I see treatment from a doctor. I didn’t order enough really for 2 weeks the first time around as I found I needed about a quarter of a pack per day to feel improvement in my pain (probably about 125-150 Mgs/day). Nonetheless when I did reach a high enough dosage I got some relief. Maybe also the sweetness will get rid of this terrible taste of salt in my mouth that is now present nearly constantly.

 

 

 

 

My Body, My Choice; Self Determination and Trusting Your Process

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Wth Love And Action All Things Are Possible - Carmella Crouched

Some have called me an idealist and did not mean it as a compliment, but there is something within me that in spite of all the negative experiences; all that can (and does) go wrong in life, still believes that the 100th time’s the charm.

Years ago I had a friend who had left an abusive husband who beat her repeatedly. To escape him she had to leave her son behind (something she hated to do, but there was no way she could have taken him with her with no money and no place to go, sleeping in laundromats, and staying in homeless shelters, and her husband would have probably found her before she’d had time to leave town and would have killed them both). In fear for her life she fled from Alaska to Georgia to start a new life, then obtained a divorce by mail. It was interesting how she healed from this toxic relationship, the process by which was partly healthy and partly not. She drank too much, slept around in an attempt to validate she was lovable and for a reliable place to live, and often had rocky relationships in which men sought to control her because of their higher status in life.

Even with all these unhealthy coping mechanisms she had some that were quite healthy and quite transformative. She was a heavy smoker and devised a way to systematically cut down her use of tobacco until she successfully kicked the habit.

She also had a wry whit part of which she’d honed from reframing phrases used by her abusive ex that (ironically) helped her to find humor in some of the must un-humorous circumstances. One of these phrases was

“First you gotta find somebody that cares…Then you gotta tell ’em.”

While these words were used as a sarcastic message to tell her he didn’t care about her, once she’d removed herself from his life she was able to take this phrase and change the connotations from those he’d meant to discount her, turn them around and use them herself to empower her.

It occurred to me that taken literally this is exactly what she did. She found somebody that cares and she told them…and low and behold they listened. She left a place  where her husband had all the control and influence and she held no credibility and widened her circle to find those who did not have split loyalties and who could truly support her.

In my 20s I took lots of people into my home struggling with difficult circumstances and she was one of them. I knew how it was to feel that nothing you said would make a difference, to feel powerless at the hands of your abuser, to have one’s whole environment completely controlled, and I wanted to do what I could to extend any street cred I had and share it with others so that they could have a soft place to fall and to heal at their own pace, in their own way.

Sometimes this process starts by one’s groping in the dark, but one must be allowed to do this without another removing their free choice even when it may appear from the outside that the person has no idea where they’re going. Anthropology suggests that man does what one can to always right ones-self no matter what. It is an instinct we all possess and I truly believe that the best outcomes are self-directed and will believe that as long as I live.

The phrase used by my friend’s ex and reframed by her is a model by which one can find their way out. When I first started this blog I made the difficult decision that I was going to make my process public because I felt (and still do) that much of what allows atrocities, stigma, and discrimination to continue in modern society is that those who are targeted are often beaten into submission and into closets where they hide in fear and shame while those who commit these crimes against them prosper and go on with their lives as though nothing happened.

All too often society is more concerned with maintaining the reputation of a perpetrator than they are the survivor. These nameless, faceless people who remain in the shadows die silently and are sometimes even vilified when they do speak out. Their truths are not considered positive enough to be discussed in polite company and attention is focused on their “telling” instead of on the act that was committed against them, and the important message gets lost in the translation.

Native American culture places alot of importance on the story as a transformative modality, while Anglo culture tends to dismiss it as overly sentimental or even “circumstantial”, yet who can really judge what is and is not relevant. It depends on the beholder and whether he or she values the teller and the wisdom the story imparts.

Those who do transform and reinvent themselves usually do so because they never allow shame to define them and they tell, and tell, and tell until they find their supporters who are loyal to them and not to their abuser(s).

When one does this an amazing thing happens. It takes the power away from the abuser and creates change both inside and out. Sometimes you have to go through 100 who don’t hear your message before the tide turns and it resonates, but trust your own process that it will. If we fail to trust our own judgment then the abuser wins and gets to define us by his yardstick. It is natural and human to have moments of self-doubt, but at our core if we believe in ourselves we will find those who believe in us and will accompany us to the finish-line.

Yesterday even as sick as I’ve been feeling, I began to notice a shift. I think it began when I saw the physical therapist. Although she couldn’t help me (with physical therapy) in some unexpected way she actually did help me by validating that I knew what was right for my body and what wasn’t. She recognized without my saying anything in the first few minutes that the plan that had been laid out for me was all wrong. If the shoe didn’t fit I could not wear it and sooner or later this fact would reveal itself. Although this shift was long overdue I began to see that the professionals charged with helping me would eventually see for themselves what I’d been saying all along, and those that didn’t would be replaced by new supporters even without my actively replacing them.

Today I faxed the material to my pulmonologist about Vanderbilt’s Autonomic Dysfunction Clinic and instructions for referral and information about the Undiagnosed Disease Network and its multi-site NIH-funded study. This innovative clinical trial seeks to help people who are having difficulty getting a diagnosis for their persistent symptoms and are often vilified for their doctor’s inability to put a name with the disease-process robbing them of their function, peace-of-mind, and even their lives. Its plan is to map the genome of these people with unusual and unnamed diseases that don’t fit the mold as well as to use other state-of-the-art methods to quantify what other tests commonly used in clinical settings don’t or can’t. Yesterday my pulmonologist sent me an unequivocal reassuring message that in no way was he going to back away from me and on the Patient Portal that is a big show of support. He had the courage to do what my GP couldn’t bring himself to do and it meant alot to hear him say that.

Knowing that he had access to the full electronic record that I could not read I knew that he probably read whatever Dr. V. had written and that most likely it was not the ominous sign my GP had implied. This validated further my growing sense that it was more a matter of how my GP was taking what she’d written than what she’d actually written. Further still, the Nursing Supervisor of General Neurology returned my call today and shared with me that Dr. V. had validated my Dysautonomia even though she’d charted it “by patient report” in the context of her saying she wanted to do the Gallium scan to find out whether the Dysautonomia was secondary to my Sarcoidosis (important point being that she believed it/me). While the Nursing Supervisor couldn’t guarantee that the Nurse Practitioner or a doctor covering for Dr. V. would write the saline order, she did say that she’d speak with the Dept. Head, Dr. G.E. tomorrow morning and find out whom I should make an appointment with and that the reason they wanted me to come in is because they want to carve out enough time to go over all my comparison MRI and CT scans and my Gallium scan and then advise. I’m thinking they may have found something, as she mentioned it may make a difference whether the Dysautonomia is primary or secondary. She did say that the Nurse Practitioner knew something about Dysautinomia and was patient-centered and so was Dr. E. Maybe, just maybe this will finally happen.

It was one of those light-bulb moments when I realized that when my GP had told me in the office that he “could not take any of” my “patient reports at face value” and that Dr. V’s validation that I have a real underlying neurological condition “wasn’t good enough” (in his words), what he was really telling me was that he (not she) was looking for reasons not to believe me (despite the fact that she did!)

While I still don’t understand his personal motive for doing this to me after 12 years I thought he’d supported me, I know now for sure that it was his issue, not mine and not hers. I don’t know if I’d ever get the truth out of him as to why he’d throw me under the bus like this, but it is comforting to know that other doctors I see do not share his cynicism.

I believe that his supervisor knows the truth about why he’s doing this and that’s why she (unlike he Neurology Nursing Supervisor) hasn’t called me back. I’d left a message on her voicemail saying I needed to know the status of the situation and whether he’s through treating me like a ninny or not because I need to know whether to count on him for anything in the future because I cannot go on like this with his foot-dragging and passive-aggressive behavior.

If he is dead set on treating me this way and viewing me so unfavorably then I won’t bother wasting my time with him, and will transfer everything over to other doctors, whereas if this is a temporary issue due to something going on in his personal life then maybe it could be remediable. The longer it goes without a phone call from her the more I begin to suspect the worst.

If nothing else I’d like to get some closure even if it turns out his “support” for the entire 12 years was merely an act of deception on his part. That would hurt, but at least I could proceed based on the truth rather than going in with rose colored glasses just to have all my goals tanked at the worst possible time. I’m not one to jump to conclusions and just throw people away and I prefer to work things out with them if their intentions are good, but having illusions that intentions are good when in fact they aren’t could ultimately do me more harm than good. As my health is declining it is becoming ever more imperative that every doctor on my team be working for me and not against me if I am to have any chance of getting what I need to have the best quality of life.

Eyes on the prize, everyone. All hands on deck. I guess we’ll see when I go in for this consultation whether they actually will support me in my plan for my treatment for my body and just how patient-centered they are in supporting my process.

Good News/Bad News, and Nearly Fainting

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Ramp to front door

I awoke again at some odd hour with stomach still rumbling and a burning inflammatory pain in my muscles accompanied by an intensely salty taste in my mouth. It was the same way I felt before ending up in Piedmont and I knew it wasn’t a good sign. I had an appointment yesterday morning for a physical therapy evaluation and hoped this feeling would pass and that things would go smoothly, but all I really felt like doing was going back to bed to sleep this off.

Transportation called to say they were coming between 8 and 9 AM and as I got dressed I noticed that my throat felt a little strange but I couldn’t quite put my finger on how. It was almost as if I had some sort of acute allergy, but I have actually been lucky in that department and have never been prone to allergies, so I figured it must be something else.

Before 8 there was someone at the door. I opened it to find a middle-aged black woman dressed in what looked like a blue scrubs outfit and wearing an ID badge like they do in hospitals.

My mind must have not been fully alert yet because for some strange reason I got a little mixed up and wondered if maybe this had something to do with my search for a personal assistant. I thought it was a bit too early for the nurse’s visit from Medicaid, but really couldn’t place anyone I knew in this type of clothing. She identified herself as being with the transportation company and I told her I’d be out in just a few minutes once I’d gathered my ice water.

In my hurry to get out the door I totally forgot my pillow, something I rarely do and always regret. This power wheelchair is hard on my butt and the back of my left leg especially and it wasn’t long before muscle spasm and a growing stiffness started to set in there and in my shoulders and upper arms on both sides. A slim elderly woman with dark denim jeans sat in the back of the van and we dropped her off at a day program downtown. She clambered past me saying hello and squeezed past to exit through the right-hand door on the passenger side.

The pain continued building to about an 8 and I was beginning to really need some medication by the time we started heading in the direction of Emory Rehab. Hospital. When we finally arrived at our destination I got off the lift and entered through some automatic glass double doors and into the lobby where a young and chic light-skinned black woman sat behind a circular desk at a computer terminal. She was smiling with a pleasant fine featured face and nicely quaffed hair that looked as though it had been straightened or as though she was mixed with Caucasion or possibly Somali though she reminded me of Shirley Jones, who played the mother on that old show The Partridge Family that was popular in the 70s. She greeted me as I passed by and I spoke briefly but was mostly focused on taking something for the pain before I got into any exercise, so I entered the room where I obtained my paperwork, signed it and then headed upstairs to the 5th floor via elevator.

The building was old with hard floors and wooden paneling that had been painted over and some of which had chipped and I didn’t feel entirely comfortable there but couldn’t figure out exactly why. Maybe it was because the lighting was dim and the place seemed outdated as though it were Emory’s step-child, a far cry from the slick danish design utilized in most of its other buildings (not that I like that decor either, but somehow the building seemed neglected).

Although the office staff seemed very kind I picked up an uneasy energy. Usually I am right about such things even before the feeling is validated with hard data. The clerk gave m some more paperwork to fill out some of which had questions on it I had never encountered in physical therapy before, questions about making social conversation and expressing oneself, which was kind of uncanny because I was having just exactly those types of problems in addition to my muscular problems. My cognitive processes seemed stuck in a mire this day and I really didn’t feel like talking. It wasn’t depression but more a matter of just feeling overwhelmed and maybe a little out of my element.

Soon a woman approached me introducing herself as Beth. She seemed kind of wooden and mechanical and there was a pushiness about her personality that seems common in the physical therapy field, not in the same way that Dr. V. is pushy, but more a type of edginess as though there was an anger hiding just beneath the surface.

I found myself distracted by all the sounds in the building and had trouble focusing enough to finish filling out the form. She brought it and me into a large dimly lit atrium with lots of padded benches in it. It felt a little too public to me but I tried to block out all the people working out on various machines, benches and parallel bars and watched to see what she was going to say or do next.

First she launched into a mini lecture about how this isn’t for everyone and that she had to warn me that after the evaluation she might determine that it would not be of benefit to me.

She began going through the rest of the questions to get as many answers as she could. I tried my best to answer but the time-frames asked were just too hard for me to remember and finally she put down the form and turned her attention to asking me some things such as did I live alone and whether I had pets. I told her about my dog Carmella and my Ball Python, Velvet. She reacted with a strong aversion to the very thought of a Python stating that she knew that Pythons “squeeze you to death” and seemed very hypervigilant based on what she’d heard about those pets released into the Everglades.

This is something I know about and those poor animals have a much undeserved bad rap perpetuated by ignorant and fear-mongering people, but seeing how Beth was positioned to strike at little or no provocation I thought better of engaging in further discussion with her on that topic after saying how innocuous Ball Pythons are and how they are more likely to hide their head than to attack people, and that what she most likely heard about were the really big constrictors such as African Rock Pythons, to which she said, “A python is a python. You can’t convince me to  buy into that. They’re an invasive species!” Honestly, if the truth be told I felt she was the invasive species in my personal space and in my life whereas my sweet little Velvet was a comfort who posed no such threat. I wished at that moment I was home with my pets where I felt safe and at peace.

This felt all wrong and I thought if I have to work with this woman I don’t know how honestly I will get through it without  a snag. Her irritation was like her skin turned inside out with all her internal organs exposed for the world to see. It was more than I wanted to know.

She engaged in some sort of nitpicking with one of the other physical therapists across from the bench I was lying on. I could not hear the words but it was clear that the two disliked each other and were barely tolerating working together. I sat up and looked over at the two, at which time Beth said “I need you to wait. I’m having an issue with someone.” Again, I thought TMI for the workplace. This unprofessional display only intensified the uncomfortable atmosphere and I wanted to leave. The pain medication and antispasmodic I’d swallowed before the session started had yet to take effect, and overall the day was not off to a great start. I’d told her briefly about my waiting for the movement disorder specialist at UF and how far in advanced they were booked up. She seemed genuinely shocked.

I explained to her that I have alot of fatigue and that I do best in the water, so I would like to have that be the focus. She commented that we couldn’t do that today and seemed to have an overall fatalistic demeanor about it as a whole. I’d brought a swimsuit just in case and wished I could just submerge myself to remove the huge weight hanging on my frame, but no such relief was forthcoming. As for massage I didn’t feel comfortable with her touching me with the type of energy she emitted, so I didn’t bother asking about that.

The evaluation that followed was one of the strangest I’d ever encountered among the numerous evaluations I’d had at various PT practices around the city of Atlanta. She had me lie down on the padded bench and pushed my legs into various positions. She did nothing with my arms although I have significant pain and spasticity in those too. She pressed and pushed and prodded my feet and legs in various lying down and sitting positions to see what my muscles would do. There was alot of jerkiness. Then she had me take a few steps on the parallel bars. I was completely exhausted after just a few steps, muscles in my upper body burning and inflamed as I supported my weight on my arms and shoulders.

As I got back into my wheelchair and we came back to the padded bench her expression had taken on a sad appearance. I knew that look well as I’d seen it before when I’d tried CPAP in the sleep lab and failed miserably, and the technician had been so saddened by the significance her experience had taught her about patients in my condition that she could barely keep her composure. It was clear that Beth too was ascribing an ominous meaning to my prognosis based on whatever she’d learned about body mechanics and that it wasn’t good. She didn’t elaborate, but she didn’t have to. I got the gist of it.

“I’m sorry” she began with a grave look on her face as if a close relative had just passed away and she was delivering the bad news. “I really don’t think you’ll benefit from physical therapy. Your condition is unlikely to improve with exercise. I think you should just do what you’ve been doing. And other than that pressing down on your feet when you are able since the spasticity seems to be less when you apply counter-pressure. It seems to be much more jerky when you’re moving your legs in the air.”

This came as no surprise to me and actually under the circumstances I was rather relieved. I guess you could say it was a good news/bad news scenario. I have honestly been in no shape to do much of anything strenuous and thought Dr. V. was being a bit overly-optimistic in issuing such a referral, especially given the fact that aquatherapy was not being offered to me. Beth wished me well at UF and I told her that my impression is that my brain was probably sending the wrong messages to my muscles and that maybe the clinic in Florida would identify a medication that will reduce this to a low roar. She agreed and we said our goodbyes.

Once back downstairs I called transportation and told the driver I was ready to go home. She stated that she’d be by in about a half hour. I sat in my chair patiently waiting and drinking my ice water. Suddenly out of nowhere I began to feel severely faint. Leaning down to hang my head between my legs it seemed started to reduce the onslaught but it was short-lived, followed by a stronger wave which was worse than the first and this one threatened to take me down, my vision became swimmy and then began to turn black. Then my hearing started to go. When I realized that sitting in my chair with head down wasn’t resolving it I waived over the receptionist to the left of me and asked if she could help me lie down or find a gurney. She replied that there were no gurneys but that she could help me to the leather couch at the other side of the room. I told her to prop up my legs in a position elevated above my head and she did. It took quite awhile before it died down and it was touch and go before things subsided enough for me to get my bearings. A nice woman came over to help me and she offered to call transportation back since a half hour had long passed and no ride yet, but the phone was rolling over to another number with just a voicemail, so I had her call quality assurance with the broker system to let them know I needed to get home and into bed ASAP. She did so and once we thought they were close to the entrance two women helped me back into my wheelchair and out to the driveway, but it turned out to be someone else’s transportation van, not mine.

The second woman who had helped me call quality assurance went in and brought out some saltine crackers which I was really grateful for. I ate several and in a few minutes began to feel a little more solid. Finally my ride appeared and the driver told me that she’d been tied up with another crisis; an elderly woman needed to go to the ER she’d scheduled to pick up for a doctor’s appointment. She had family but apparently they couldn’t take her themselves so that tied her up there at her house longer.

When I arrived home I immediately wrote my pulmonologist on the Patient Portal telling him what happened and that I really need his help. He’d answered my message from the night before asking if one of the doctors from Piedmont would refer me to Vanderbilt or put down the official diagnosis. I explained to him that they were hospitalists only and that they probably would not since I’d been out of their hospital 3 months already. I’m trying like hell not to end up back at an ER.

I never heard back from Dr. W. a week ago after the message I sent through her receptionist. I plan to call her back but have an MRI today on my TMJ at 8:00 AM. Will get on that as soon as I get home. Just want to get this appointment out of the way and then stay in bed until we can get treatment on board.

I fear after how I was abused and charted on at Emory that any ER in the city most likely would treat me badly, not treat me at all, and it would be a wasted trip anyway. All ERs are hooked up electronically and the first records they look at are your last ER visit. That would not be good. I wonder how long Emory will let this go on and how severe it will get.

My GP never lined up a hospitalist to work with for direct admission in such an event and it’s getting dangerously close to my needing hospitalization once again. I need to call his supervisor back and get her to find out why and tell her about these episodes becoming more frequent now. I need to let her know how important this is and that I cannot safely go to an ER and that to do so would surely put me at further risk. Things are getting really crucial now. Someone has to do something, and soon!

 

Setting The Record Straight; What They’re Writing About You Could Impact The Care You Receive

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Letter from Dr. Norvell - Narrative Needing Correction in my Chart DSC_0002

The above photo shows an inaccuracy that was documented and most likely placed in my electronic record. My liver specialist sent me a letter saying that my “elevated liver enzymes had again normalized”. He followed that up with a sentence stating that he would “hold off on further work-up at this time and continue monitoring periodically.”

Here is a perfect example of an inaccuracy paired with statement which could have a chilling effect on valuable work-up by other doctors, especially in related fields.

First, as you can see my Alkaline Phosphatase is still above the normal range. He should have said they’ve “improved”, from the previous blood draw, not that they’ve “normalized.”

Second, to be truthful he should have said “I would hold off on liver biopsy at this time” because that was the only form of “work-up” he could think of to do regarding my liver enzymes.

Seeing as I have an appointment coming up with a brand new Gastroenterologist in May, already a long-enough 3 months away, I don’t want her to look at that and follow his lead and cabosh whatever work-up she may be thinking to do regarding the lower GI spasticity (and long-term chronic constipation which I can’t even feel). Considering this Dysautonomia has yet to be treated since I left Piedmont hospital and all the dodging my GP has done regarding it, I want these symptoms fully looked into, and documented, since it’s not all about blood pressure, because if they aren’t this could go on forever and the root cause might never be treated.

I realize now after the ER incident (for the backstory see the post The Dark Man) just how much power words in a patient’s chart have, and the importance of checking to make sure things written are accurate and having them corrected as soon as possible when they are not.

Figuring I better clear this up sooner rather than later I called and left a message for a nurse to call me. Luckily one returned my call fairly soon after, and she was very understanding. I guess she has seen first-hand the damage irresponsible charting can do so she told me she knows this kind of thing goes on and does hurt patients’ ability to get proper care, so she would ask that these statements be changed in the electronic record, and she even told me she wished I could get an earlier appointment with the Gastroenterologist. She said at the end of our conversation that I could feel free to call her anytime and I took down her name.

I thought yesterday would be a day of rest before the Gallium Scan today but no such luck. With all the tests and orders that had backed up over the past few weeks and months invariably there were some things that were confusing and I had to make some phone calls to radiology to make sure that the Modified Barium Swallow test coming up was one and not two different ones, and that I hadn’t been double scheduled at two different locations. Emory’s code is sometimes hard to read and there are letters signifying which location things are being done, so after calling and making sure that I would be going to the right place for that and then verifying whether the physical therapy evaluation was at the same place as the physical therapy “treatment” I had to call and make sure my transportation was scheduled with a reliable service because the other day’s appointment took 6 hours for me to get home and I felt like hell afterwards. I don’t want a repeat performance of that experience. First they were late getting me to the place, and then had trouble opening the door that has the lift on it. One of the two quality assurance people was in a meeting so I spoke with the other who had one service lined up but was trying to get me set up with a better one. I never received a call back by the end of the day, so I am really hoping she gets this worked out so that I’ll get there and get back in a timely manner.

After Monday’s fiasco I came home to find a notice from the mail carrier tucked into the crack of my door. It was from Emory Healthcare. Usually in my experience a Certified Letter isn’t good news, so I thought. “Oh boy, what fresh hell is this.” It figures they’d send it on a day when I was at a medical appointment.

Certified Letter Notice from Emory Healthcare Sent On Saturday March 5th DSC_0001

I looked the tracking number up on the USPS website and it says “Your item departed our USPS facility in NORTH METRO, GA 30026 on Saturday, March 5, 2016 at 9:18 pm. The item is currently in transit to the destination.”

The zip code indicates it was mailed from Duluth, GA.

It must have been mailed on Friday, then.  It could be a response from the President of Emory Healthcare because whomever sent it didn’t know how to spell my name. Why he couldn’t just send me a regular letter like the others from Emory did is beyond me, or an email for that matter. It was supposed to be re-delivered today but there was a temporary carrier and she had not been briefed. She told me she’d ask someone to come back out here yesterday since I was going to be out at that time today, and she wrote it down but nobody ever re-delivered it, so I guess I’ll be on pins and needles until God-knows-when. I hope it’s not more of the same stonewalling and empty and insincere apologies of non-responsibility I’ve gotten from each chain of command so far. Would it be too much to ask for once for a big corporation to say, “We messed up, and we are going to correct this ASAP” and then actually do it?

If the mail carrier tries delivering it again tomorrow I will most likely not be home yet and then I’ll have to try to get it delivered a 3rd time.

One good piece of news is that someone from Shepherd Center called me back late yesterday afternoon and told me she’d call me again tomorrow to work on setting me up with one of their social workers. Apparently she dialed the wrong number a few days ago and that was why I never heard back. Her husband was picking her up and she had to leave before we’d finished our conversation, but she, like the hepatology nurse was very nice and actually got what I was saying regarding the nightmare I’ve been living through.

Getting back to the topic of what’s in your medical records; you should check this regularly just as you would check your credit report for errors or inaccuracies. You might be very surprised by what your doctors aren’t telling you!

It’s also a good idea to ask for copies of your doctor’s notes. It’s better to find out now than several months or years later when you find you can’t get any help and are wondering why.

When you find things that are inaccurate in the record ask the doctor to remove or re-word it so that it doesn’t cause more problems for you down the road. If he/she won’t do that or minimizes your concern that tells you that particular doctor isn’t genuinely looking out for your best interest and only looking out for himself. A doctor who truly cares about you should not have a problem with your request as they wouldn’t want to do anything to hurt you or hinder your getting the medical care you need.