Monthly Archives: March 2016

Dare I Hope?

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As Spring brings new buds after the thaw from the harshest of Winters sometimes one finds unexpected reprieve even at the 11th hour; maybe even because of it. Although I don’t want to jinx it today’s visit to Emory General Neurology was more hopeful than I’d expected. I’d prepared a list of things I needed help with, placed it in my soft briefcase, and after dragging myself out of bed having barely slept, back and core aching, dark circles under my eyes, feeling gutted and weak I forged ahead not knowing what lay ahead. 7 AM is not my best time of morning and I was holding it together by a thread. As I arrived on the 5th floor I was already starting to feel worse and sucked on ice cubes from a large styrofoam cup with a plastic lid on it in a rather ineffective attempt to settle my stomach. After about 20 minutes in the waiting room a nurse in a light green scrub outfit, red hair parted slightly to the side and flipped upward called me to come back. She had a Hispanic accent, so at first I thought she was the Nurse Practitioner  although the name of the woman I was to see sounded quite WASPY. I didn’t quite get a good look at her name tag as she sat at the small wraparound desk in front of her computer terminal. She asked me the usual mundane questions about my medications, weight and height and took my bloodpressure which as is usually the case at Emory appointments runs somewhat high. It seemed as though they were well versed as to what I was asking before I ever arrived and although it was a little unnerving, it didn’t appear that they were at all viewing it negatively. I wondered if they’d had a meeting earlier that morning. The nurse assured me that I was in good hands and that this was a “good team”. She informed me that the Nurse Practitioner would be in shortly.

In just a few minutes another woman came in. She had dark brown hair a little longer than shoulder length, but as bad as I was feeling I didn’t register much more detail than that. She introduced herself as the Nurse Practitioner and explained that Dr. V. was going to advise her and that she didn’t have a clear-cut idea about where to go from here. She told me that she could write orders but had to check with Dr. V. first although she was covering for her.

It was unclear whether she’d read the scan or if any of the doctors had but at that point I really didn’t care since it was the Dysautonomia that was most pressing. I handed her my succinct list which she was grateful for and she looked it over, commenting on several of the items favorably.

This was very different from my recent experiences with Dr. B. I felt comfortable with her enough to tell her what happened in the ER and told her they treated me like I was nuts, and what had transpired since, including the dumping by Dr. B after he failed to treat my Dysautonomia for so many months and she didn’t bat an eye.

“I’m not nuts; I swear” I said preemptively, but no opposition came.

“I don’t believe you are either” she responded looking me squarely in the eye. She seemed warm and genuinely open. She went on to tell me she’d heard alot about the Undiagnosed Diseases Network and that many of Dr. V’s patients asked for referrals there. Apparently Dr. V. liked to see patients 3 times before referring them so that she was familiar enough to write a good letter but that given my difficulty getting the help I needed until way late she would ask if there was enough in the file and from my interview with her (the Nurse Practitioner) to make the referral sooner. This was more like it! Finally, someone who really wanted to make some headway!

I told her about how my adoption yielded no medical history and that there was no documentation of my ever having been born in the State of Pennsylvania, how I’d had strange symptoms for years ever since early childhood and that I’d needed genetic testing for a long time.

I went on to tell her that it had mainly been brushed off. She thought my line of thinking made perfect sense and was intrigued by the possibility that I might have some genetic form of Dystonia or that this may be secondary to a larger genetic syndrome.

“I don’t know what so many doctors have against acknowledging Dysautonomia. It seems like this dirty little secret that nobody wants to touch with a ten foot pole.” She smiled in agreement.

“I don’t know what it is that makes people view it any differently than any other disorder.”

“I Don’t know either” I said. “It seems like the doctor at Piedmont who had that unofficial conversation with me at my bedside didn’t want to go on record for the diagnosis nor the IV Saline treatment, but when I got home I discovered there are quite a few doctors doing that for the condition. It’s really not that controversial.”

“Really Dr. V. is into controversial!”

“Really?” I had to hear this.

“Yes”, she continued. “She really likes that.”

“So I have the right doctor” I queried.

“Yes.” 

“I really hope she’ll do it because I’m absolutely miserable going for almost 4 months untreated. I don’t know how much more I can take.”

“I’m sorry”, she said looking a little sad.

The nurse practitioner asked a few details about my abnormal movements and noted these, then said she’d call Dr. V. at home and see if she could get permission to write these orders and that she’d get back to me once she got an answer. I got her card and headed out into the waiting room to call my transportation service. Then I went downstairs to wait by the front entrance. After sitting there awhile I got really cold and the near fainting spells hit me like a ton of bricks. My core ached from the spine inward and increased in intensity. I doubled over in pain and tried holding my head down but that wasn’t very effective and I began seeing stars and getting dizzy. I figured I’d better go back upstairs because if I fell and passed out in that downstairs lobby alone it could be bad.

Heading back upstairs I went to the front desk and asked if there were some coffee as there was in some of the other doctor’s offices. The receptionist said no, but that she might have some in the back she could bring me. I needed some sort of external heat source to warm myself up. As she went to bring me some coffee I lay down on the one couch they had in the waiting room and put my feet up on the armrest. Finally the faint feeling started to subside but the hot and cold spells continued to alternate every few minutes. I managed to drink the coffee but still felt very nauseated.

It took an inordinately long time to be picked up to go home, and even longer to be picked back up from the pharmacy after refilling my prescriptions.

Once home and situated in bed I called Daria. The woman answering at the front desk asked who it was and after giving my name I had the feeling that was why she was unavailable. I was told hastily that she’d call me back as soon as she could, but it was implied it wouldn’t be today.

I hope after all this that she isn’t tired of all the doctors not having followed through and that she’s not bored with me already just when I might be getting this treatment successfully.

I sent the nurse practitioner an email to follow up and send her the photos of blood pooling in my feet and a few other details I’d forgotten when I was in the office as well as filling her in on the fact that my condition has continued to get worse. Hopefully she called her today and didn’t wait, as I’ve waited too long already.

Tomorrow I have an appointment with my pulmonologist. I might have him do liver enzyme blood work, as it always seems to be elevated again when I feel this way.

 

The Politics of Hate and Social Dawinism

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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!

 

Lower GI Spasticity Wreak’s Havok – Dysautonomia Untreated

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Lower GI Spasticity DSC_0008

Friday came and went without an order written. Dr. V. was “with child” as she so aptly put it at my appointment with her two weeks ago, and wasn’t much help, and so my Dysautonomia rages on. Even with her baby’s untimely birth she was able to tell the nurse to have me “follow up” with the nurse practitioner when she could just as easily just given them permission to write the order for the saline and maybe I’d be starting to feel better right about now, but that would have been too simple. It seems that every time I start to “think positive” I am let down and I find out things aren’t looking up afterall.

I told the nurse who had delivered the message that the nurse practitioner was welcome to call me and write the order but there was no need for me to waste a trip to go out there just so that I could tell her what Dr. V. already knew herself. I reiterated that this has gone untreated for 3 months and my patience is reaching my limit. If Dr. V. was so concerned about my “stress” level then why stress me out further by making things unnecessarily hard for me. This runaround I was getting was BS and everyone, especially Dr. V. herself knew it. It was high time they put this condition down in my chart officially, quit monkeying around, and get down to business. 

“Look” I told the nurse, trying my best not to hit the roof, my irritation level already approaching 10, “I’m chronically ill. I have 3 appointments next week and I can hardly withstand being out of bed in an upright position for 15  minutes. I’ll be lucky if I can even tolerate the appointments I’ve got, so I sure can’t afford to make more trips out that aren’t absolutely necessary. That’s the whole point! I need this treated at home. All she has to do is authorize the order written by the nurse practitioner or whichever doctor is covering for her. It’s not that difficult. My GP was going to treat it until Dr. V. dragged extraneous stuff into the equation and he backed out, so in all fairness, she is responsible now. Number one; this should have been entered officially in my chart among my diagnoses. Dr. V. acknowledged that she was aware of it when I saw her. All the data and pictures of my purple feet are there for any doctor to see anytime they want, and number two; we already know that saline works for me, so why go back to square one and reinvent the wheel?”

“Yes, Ma’am” the nurse replied sheepishly. “I understand. I’m just passing on the message. There’s nothing I can do.”

Then an ugly truth occurred to me. The reason they wanted me to waste an appointment was so they had another reason to bill my insurance (which I’m sure doesn’t pay much), but that’s not supposed to make a difference in the level of care I get. Right???…Right???

“Let me speak with Dr. L. Isn’t he the head of the department?”

“No That’s Dr. E.”

“OK, then could you please let me speak to him? This is becoming too much to take. It’s time they did something about it.”

“No I can’t let you talk with him or any of the doctors. I have to have you go through the Nursing Supervisor.”

“What? I can’t speak to any of the doctors? That’s ridiculous! Look, it’s fine with me that Dr. V. is on maternity leave but if nobody on the team can call me to do anything about this then what good is this clinic? She assured me that I would not be left uncovered in her absence, but that’s what’s happening. One would think they’d prefer treating this earlier than later so it doesn’t become another emergency. I’ve already been hospitalized and in the ER in just the past few months. I can’t let that happen again. Things are already getting worse again.”

“That’s not how this clinic works. I have to have the Nursing Supervisor call you.”

“OK, if you absolutely must then please ask her to call me today so we can get this resolved. The weekend is coming up and I’m really not feeling well. I don’t want to waste anymore time.”

The nurse took my name and number and told me she marked the message high priority, but by the end of the day no call had come in.

Saturday I awoke from a sound sleep with a weak, irregular heartbeat and feeling woozy. There was an adrenergic feeling in my chest and in my muscles as though lactic acid had built up and I’d overdosed on it; a horrible feeling I know all too well (and there was nothing I could do to make it go away and nobody to call). All I could do was wait it out until Monday when doctors were back in the office.

At times like these it’s easy to start wondering why you’re being allowed to suffer. Do they dislike you? Are they that clueless about this condition as to think it’s minor and doesn’t need treatment, or do they just think your insurance pays so little you’re not worth it. None of these rationales is good because the long and the short of it is that you’re being neglected no matter how you look at it. That fact cannot be denied. Seriously, my dog gets more compassion at the vet’s office!

Sunday rolled around and I awoke early, several different times; first with fasciculations in the toes of my right foot, and then followed by a horrible rumbling in my stomach and the realization that the acute flare had hit once again with a vengeance. It felt as though someone was literally twisting my intestines from the inside. I gripped my lower abdomen in agony and the pain was so piercing I could hardly catch my breath, burping, lightheaded, and feeling slightly to moderately faint, with hissing in my ears. I then started getting nauseated. It literally felt as though my guts were going to explode! Then I began overheating. Every minute felt like an hour as I lay there waiting for the pain and gastric upset to subside.

Tonight I’m still not feeling well. I’m a little concerned about the appointments that got jammed up this week after the care slowdown because I feel like I really don’t need to be up out of bed. My stomach is rumbling, and I’m overheated but sort of feel like I’m having a cold sweat at the same time.

Yet another weekday has gone by and after a few more  calls to follow up still no help from General Neurology, Nursing Supervisor or otherwise. Message is still pending according to the switchboard operator as of late this afternoon.

Doctors Gone Wild Are Like Herding Cats

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Person holding little cats in arms.

As a patient you should be Chairman of the Board when it comes to your own body, but working with several doctors and keeping them all on the same page with your goals and priorities can be a challenge.

Patients with chronic diseases and disorders are now more proactive and educated about their health and options than ever before.

There is an evolution and a revolution taking place and with it some growing pains as both doctor and patient struggle to adapt to a new paradigm and renegotiate the once traditional roles that have dominated the field of medicine.

Every movement from Civil Rights to Women’s Liberation has over time experienced a shift in the balance of power as the once less powerful party begins to take a more active part in the determination of their lives and their bodies.

It is to be expected that while this transition to empowerment takes place that there will invariably be some backlash from the party that started off with the most power and control and a resistance to relinquishing that which should rightfully belong to the other.

Today’s patient reads more research, and spends more time weighing their options and fine-tuning their plans for optimal health and quality of life than do their primary care physicians.

What was once traditionally viewed as over-obsessive involvement in one’s health is increasingly becoming recognized as a positive attribute not to be pathologized but celebrated and is rapidly gaining acceptance in mainstream medicine.

Naturally doctors may feel threatened given the redistribution of power within the doctor/patient relationship. Where patients used to look to the doctor for their sole source of guidance, many patients are not waiting for this edict and have now begun to take the helm in the diagnostic process as well as in matters of well-care such as diet, exercise, and alternative therapies.

Increasingly patients are publishing books, blogs, and even sometimes papers in medical journals as they become more sophisticated and better informed in areas once exclusively limited to doctors. They have begun to command an equal seat at the table on boards and decision-making bodies of illness specific organizations, and have carved out a niche for themselves as resident experts in online forums, support groups, and on discussion panels at medical conferences. 

At the same time many physicians have become so overloaded with the volume of patients they see on a day to day basis that they have little time to devote toward staying up to date on the latest practices and innovations in a given field and this role has increasingly landed by default on the shoulders of patients themselves.

Insurance companies pay less and demand more paperwork of doctors in the field and what used to be an hour visit is now 40 minutes, or even 20 minutes in order to generate enough revenue.

In this kind of high volume high pressure environment the focus over time often becomes more that of quantity at the expense of quality and as a result doctors may find themselves falling into a rut of repetitive and mundane chores that become tedious and tiresome. There is little incentive for doctors whose main bread and butter comes from performing physicals, tending to minor medical issues such as the flu and sprained ankles to be creative.

If  you are one of the lucky ones to have a DO or one of those rare doctors versed in chronic illness who can manage all the facets of your disease without need for specialists then it can be much simpler, especially when that doctor is working for you to make things go as smoothly as possible and understands just how important and valuable your limited stamina is.

If not, then you may find as your condition worsens that you do need to add in more specialists in order to get all aspects of your disease properly handled. This can work, but a patient must be prepared to be very assertive, be a good “manager”, and there is always the risk that some of these physicians can get away from you, going off in their own directions and those directions may run counter to what works for you.

The worst case scenario is when cross-talk between doctors without the patient included in the loop circumvents what the patient wants for him/herself and some of the doctors decide they “know what’s best” for the patient in place of the patient’s judgment. This sort of “mutiny on the bounty” can wreak havoc on the relationship between doctor(s) and patient, and it must be remembered that the patient should always remain central if this model is to work effectively. The patient should always be “head of the treatment team” and the doctors in a consultancy role; not the other way around.

While for many doctors in 2016 this is still a stretch for them to accept, it is the new norm and increasingly accepted in mainstream modern society as patients take a more proactive approach to their own healthcare. As in other relationships, sometimes 3 (or 4, 5, and 6) can be a crowd and dynamics can become sticky and awkward as each seeks to find his/her niche in the care of a patient they have in-common. For the patient who is ill this scenario can become like herding cats, a constant challenge to keep everyone on the same page (some of which may not readily accept that they in fact are there to work for and on behalf of the patient).

Traditionally doctors have been authority figures issuing their professional opinions and their directives with the expectation that their patients follow their lead, and so for some physicians adjusting to this new paradigm of deferring to the patient is a bitter pill to swallow and they have difficulty going along with it. This is why I put off bringing specialists into my care as long as I could. I knew that my GP was used to handling all my care for a number of years and he didn’t seem to like referring.

In retrospect I think the problems in our relationship all started when I began to see other specialists because there were certain things that were beyond his expertise. I began seeing him less often because it was necessary to work more intensively with my pulmonologist due to the fact that I had some worsening respiratory problems that became quite serious and I was in crisis.

This pulmonologist is especially patient-centered (despite what I’d heard about the specialty as a general rule), and he has helped me tremendously, working with me to design a plan of action that fits me as an individual. This is the type of physician someone with complex medical conditions needs on their team.

As time went on I filled in my GP as to what was happening and as it became clear I would need yet another referral to a neurologist and the pulmonologist wasn’t sure who to recommend, I asked my GP if he knew somebody who was good and his response was oddly irritable out of proportion with the request.

I thought he would be glad that I wasn’t keeping him out of the loop and that he was not forgotten in this process, that I was asking for his input, but instead he seemed hurt or resentful that I’d spent so much time working with the pulmonologist.

It was pretty clear that he felt displaced and responded that if this doctor felt I should see a neurologist then I should get a referral from him. He then went on to say that there are two connected with the sleep lab for which he works, and mentioned their names.

I wrote back on the Patient Portal to say that I also value his input and the other doctor really didn’t know any neurologists he could personally recommend and that he had limited contact and knowledge of these two who worked in the sleep lab. Also, I added, I did not want him to feel he’d been forgotten, that I would still need him regardless of the fact that I now require other specialists to get through this difficult time in my disease-process and I let him know how much I appreciated the referral because it may have saved my life.

He said he thought I misunderstood, but to this day I believe he was in denial or not consciously aware that he was in fact jealous of the relationship I had developed with the other physician. Maybe he was unaware or underestimated of how much his ego was invested in his being my go-to person and when he got into territories that were outside his expertise he felt inadequate to help me, so his frustration was displaced onto me, the patient. I hate that this has caused friction or conflict, but on my part I feel I have done what I’ve had to do to take care of myself and I meant no offense and was not trying to snub him in the process.

As much as I feel he has profoundly betrayed my trust that he would lash out in such a way; that he’d take such a low blow as to sabotage my treatment, I do not forget the way things used to be and just stop caring on a dime. Maybe that is what hurts me the most. If he wasn’t valued and I felt no attachment to him I could just say “so much for that jerk” and move on, but feelings are not that neatly dispensed with when one finds out the person you once knew has ceased to exist in the here and now.

I am still somewhat in disbelief that he could be so cruel and vengeful when his smiling face says otherwise. I’m struggling with these conflicting signals; the duality of a pleasant and effusive facial expression upon greeting that hides beneath it something that is anything but. I must acknowledge that in the time-span I sat in his office the other day his smile quickly became a sneer, and that I did see other visual cues that indicated his true demeanor such as eye-rolling (never a good sign that you’re being regarded with any kind of esteem), but nevertheless I am pretty gobsmacked by his change. While I know it happened over a period of months as my disease progressed, his disdain is thinly veiled now and it is unnerving, to say the least. And further disturbing; (according to his supervisor) he is the top-rated GP in Emory’s system, so I am left not knowing what to say or what to do because again, if he has chosen to focus all his frustration on me and continues to treat his other patients well, then I am truly alone. As much as I didn’t want to have to speak with his supervisor it was the only way to get him to do what he was supposed to do and to get these orders unstuck that were sitting there for weeks and some for months. I had been trying and trying to communicate with him to no avail, and at some point something had to be done.

I still need to follow up with her on the topic of his refusal to treat my dysautonomia and his overall treating me as irrelevant. If my pulmonologist can and will treat the dysautonomia (or Dr. V will do it) this part of the problem may be something that can be worked-around, but the issue of irrelevancy has to change for there to be any chance for us to work together in any capacity.

I cannot work with a doctor who treats me as though I’m a hypochondriac because I am fully involved in my own diagnostic investigation and I have to be able to openly discuss differentials with my doctors without being judged in this way. If he fails to see the value I bring to my own healthcare and fails to understand that my body is my domain then all truly is lost in the relationship. Carl Rogers, originator of Humanistic Psychology coined the phrase and the concept of Unconditional Positive Regard (which I believe is the cornerstone of the Patient’s Rights movement).

That philosophy says that human beings should be supported in their right for self-determination and that creating a safe, nurturing, and non-judgmental place for them to grow will engender healing. At the core the practitioner must believe that the patient is doing the best they can. If one does not believe this then he/she will eventually not be able to hide it in their interactions.

So based on this theory I must assume that my GP thinks the worst of me, and it makes me wonder what he held back, what he wasn’t saying in our last conversation that day in the office. What could he believe that would make no explanation I gave him sufficient, and invalidate all my symptom reports?

For that answer I need to know exactly what Dr. V charted or said to him directly (whichever it was), as it was based on her remarks that he diverged from me and decided not to treat my dysautonomia. This is where the herding of cats comes into play. I have placed a call to her office stating that I need Dr. V or her nurse to call me. When I receive the call I plan to ask exactly what was said and whether it was written or on the phone, and I’ll let them know the effect it has had and ask that anything damaging of a non-neurological nature be removed from the electronic record.

When such damaging events take place the patient must act swiftly and address them with each individual who has contributed to the damage to have them correct their part in it. Only then can positive constructive working relationships be restored and the focus go back to the task at hand. It is vitally important that every member of the “team” commit themselves to the unified patient-centered purpose identified by that patient, and not try to force one’s own agenda.

Members must not gang up with other physicians in an attempt to unseat the patient’s autonomy if this model is to succeed and a positive outcome achieved. The primary allegiance must always be to the patient because without trust the working relationship is illusory at best.

 

 

 

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.

If The Shoe Doesn’t Fit The Patient; What To Do, What To Do…

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Tan Shoes DSC_0001

What happens when a patient doesn’t fit the healthcare infrastructure?  Sunlight filtered in through my bedroom window and for just a few moments felt a residual sense of peace and tranquility that only comes with sleep. In that state between sleeping and waking I had an epiphany that each of us comes into this world with an inner wisdom, and that healing is as much about honoring the individual and their own process as it is fixing broken parts.

Message to Doctors

I have a saying that one cannot ride two horses at one time. You cannot claim to be a healer while you harbor ill will towards that same patient in your heart. The latter invariably poisons the former, and in that environment there can be no healing. It’s a barren and desolate place full of contradictions. It’s about can’t rather than can do, about no rather than yes, it is a restrictive landscape rather than expansive, and in such a place creativity cannot survive. There is nothing more soul-sucking than that which accepts lack as the status quo.

One must be guided by the highest common denominator, not the lowest, and must be willing to reach beyond the walls of the box where they reside and embrace all that exists to be discovered outside ones own experience.

The best healers are ones who can put aside the ego for the greater good and truly put their patients’ needs first, step into their shoes, and see the world from another perspective, always understanding that at the end of the day it is the patient who lives in their own body, knows how it feels, what it likes and doesn’t, and ultimately what it needs.

To be a true healer one has to be a good listener. There are clues there if you’re willing to look.

Give the patient nothing to fight and the journey will go smoothly. There is a time for fighting and that time is when you and your patient run into brick walls in obtaining necessary services, when you need things completed stat, and when nothing seems to be working, when your patient has neither the energy nor the will to fight alone anymore. Save it for those who seek to stymie the patients’ best efforts toward a better life, for the procedural road-blocks that invariably crop up, for the budget cuts in their health insurance that tell them they cannot have a life-saving operation, a medication that keeps them out of suffering, or a piece of medical equipment that makes the difference between being completely helpless and able to do more with ease.

You may think that the above are losing battles and find it easier to tell your patient to accept that he or she can’t have that medication that keeps them out of pain or fights their cancer, or that they must live with the constant fatigue that makes life nearly intolerable, but to fight your patient’s process is the biggest losing battle of all. The biggest mistake is to have to be “right” because in so doing you lose sight of why you’re there in the first place.

You must ask yourself would you rather by “right” or do you want what you do to work?

Always remember that your role is not to dictate nor to gate-keep, but to facilitate whatever it is that the patient sitting in front of you needs, and to put their priorities before your own, to learn and value what is important to your patient, the goal being to achieve the outcome that they want.

Too many these days live by the philosophy

“If the shoe doesn’t fit then break the foot and cram it in there anyway.”

This is the wrong approach and here is why.

1) It causes trauma

2) It creates an adversarial relationship that precludes creative brainstorming and solutions

3) and it simply does not work. Your patient is an individual and must be treated as such if you want  healing to happen. One can never presume to know what’s going on within another. Forcing your will upon another person may obtain short-term compliance, but compliance and effectiveness are two distinctly different things, and merely insisting that your patient fit into a cookie cutter frame causes discord between you and your patient and within him/herself.

Nobody is a better expert on the patient than the patient and the best outcomes for quality of life happen because you mutually approached a problem and fit the solution to the patient.

A Patient is Not A Diagnosis

Too often doctors and other healthcare professionals focus too much on diagnosis and leave the patient behind in the process.

Sometimes diagnoses can be identified right away, and other times that process may take years. When it does you must ask yourself “What can I do to help my patient in the meantime?” rather than thinking in terms of all the things you cannot do because you don’t yet have a diagnosis. Life goes on for that patient between consultation and diagnosis and your mission is to make living as comfortable for your patient as possible.

Now is not the time to quibble about how many clinical trials a given treatment has, nor to split hairs about whether a particular treatment is warranted. The vast majority of patients are realistic about what helps and what doesn’t and today’s patient may have read more of the literature than you have and be well-versed in what treatment options are available.

Ask them what has worked in the past and what hasn’t. If the patient brings in a list of goals or priorities for testing and/or treatment this should be respected. Identify what things you can personally do and for those you can’t, try to locate other professionals and/or services who can meet those needs. Sometimes the best thing you can do is be a strong advocate for your patient. If you convey that you believe in them and that you support them other providers will too and chances are you will obtain the desired result.

If you are unsure about certain options, don’t just dismiss them out of hand. Give your patient a full explanation for why you take the position you take, but be prepared to listen to the patient and to keep an open mind. Remember that being effective is much more valuable than being “right”.

while you may get the occasional outlandish request, most will be within reason.

Never discount or devalue a patients’ symptoms. This is important information and should be treated as such. Understand that this is an asset, not a sign that your patient is a hypochondriac. It is better to know all the symptoms they’re having and to discover that everything’s OK than to miss a life-threatening situation because you didn’t take the patient seriously, and worse, failed to act when you should have.

If you find you spend more time and energy trying to get out of doing for your patient than you are advocating for them you need to ask yourself why.

The following is an example of an instance in which a doctor is trying to look for all the reasons why not rather than using that time to try to find a way to make a given treatment accessible.

Sent: 03/05/2016 9:54 AM

Message from my GP;

“If Piedmont felt that you needed IV fluids they would have given you a PICC line before you left and would have ordered the fluids. Actually, if they felt that you needed IV fluids they would not have sent you home at all. Even if I tried to order IV fluids for you it would be denied by your insurer. If you get into another situation that you feel you require IV fluids, please go back to the hospital. PB”

Clearly this is untenable. I can’t live in the hospital and this problem is not going to just go away so the only reasonable solution is to treat it at home.

Notice in his note he did not offer to do anything or offer any alternative.

If Piedmont had given me a PICC line what would he have done? Most likely he’d have told me exactly the same thing. He would have then said he couldn’t use the PICC line, and go back to the hospital so that they can handle it. Shifting responsibility never solves anything, and when everybody is pointing towards somebody else, that leaves the patient with no help, only to become sicker, and eventually the hospital becomes a self-fulfilling prophecy. There were a few days at Piedmont that I was in really serious shape because my blood pressure was so low I was sinking into a stuporous state. Nurses kept trying to rouse me and all I wanted was to “rest” even though I knew what that meant in the larger picture. I have only been in that state one other time (and that time 12 years ago my blood pressure was dropping really low too). They did an ultrasound to see if I had urinary retention because I had laid there motionless for many hours and apparently I did but had no awareness of it because a sort of euphoria sets in.

My Response;

“Yes, you’re right, Piedmont should have written the IV Saline order for once I went home, and they discharged me too early. That’s where they messed up on that end. The doctor working that day acknowledged that he knew I wasn’t technically well enough to go home (but apparently didn’t document that for obvious reasons), and told me he was going to write the order and that a nurse from Gentiva would be out on Sunday to get started. (I was discharged on a Saturday but unknown to me the doctor failed to write the order by the time I was leaving. By that time it was too late to cancel the discharge and my transportation was on its way to pick me up). It was all rushed past me and I had nobody advocating to see to it things were done right. I just did the best I could on my own. It was hard enough to get the forms filled out to have my records sent to Emory before I left.

A doctor had spoken with me midway through the hospitalization and told me that this is chronic and so he thought it best to have me on the IV Saline continuously since things began destabilizing again when he tried discontinuing to see what would happen. He realized that I would need to be followed for this and I guess he assumed Emory was capable of continuing it on an outpatient basis once I did leave the hospital just as people with other chronic conditions are treated even outside the hospital.

The reason they discharged me when they did despite my condition was that they felt I needed to see a movement disorder specialist and administration was on the attending’s back because this is supportive care and all they could really do at their facility (not that it’s not helpful, not needed, nor unwarranted).

They felt I needed to get to some place like Mayo (not realizing there was a 1 year wait) in case there might be more that could be done to treat my underlying neuro condition in addition (since the Dysautonomia is probably secondary to another neurological condition) and they weren’t a major medical center with those kinds of experts. They probably assumed that keeping me there would hold up that process. Their attending physicians changed almost daily, so it wasn’t all that organized from one shift to another.

Emory is capable of putting in a central line if necessary to carry this out. If there is any other mode of IV access that home health would be willing to use I’m OK with that. The nurses specified a central line since they couldn’t come out everyday and they told me that a port was the least risky for infection. It seems to me if they came out 3 times a week they’d be checking it often enough to prevent complications whether it’s in the arm or other type device, and if it turns out I need it for other things later on it will save having to do it later. Gentiva is also supposed to have a nurse on call after hours in case of emergency.

I’m working on getting longer-term services through Medicaid that also provide nursing. That’s the service that will take 6 weeks to obtain and through which I’d also obtain the personal assistant. That agency might be able to authorize nurses coming out more times a week.

As for whether insurance will cover the treatment; that’s the kind of thing a GP is supposed to help advocate for on behalf of the patient and if all else fails see whether there are other resources available to cover it with. We already know it helps improve autonomic processes from how it helped at Piedmont. One of my doctors needs to do this.

I just seem to be in the unlucky population of patients who have orphan diseases that are challenging to treat. It’s not like I had a choice. It’s just how my body was made. If it’s frustrating for doctors it’s 10-fold frustrating for me because it’s my body that goes through it. It doesn’t always wrap up in a neat little package, I wish it were that simple, but that doesn’t mean you stop treating, doubt the patient’s credibility, and stop doing anything you can, or that you take that frustration out on the patient.

Having to prove everything 20 times over beyond a shadow of a doubt and being made into a political football does not inspire me to trust nor does it make me feel supported while I’m facing significant health problems. What I need right now is gentleness, kindness, and real empathy and understanding.

Piedmont could have done some things better but I’m here now and it is especially crucial that my regular treating doctors work with me and not against me. I have enough hurdles as it is given the complexity of the disease itself.

I don’t know what the future will bring in terms of my prognosis and things may get worse. All the more reason to line up somebody amenable we can work with in case I should need hospitalization again in the future. Losing control of my body processes is unsettling enough without also having to worry whether my doctors can handle it emotionally and whether they can and will do what needs to be done for me in an expeditious manner.”