Preparing for the Transfer

22 Kt. Heart

I know nothing stays the same, but if you’re willing to play the game it will be coming around again. So don’t mind if I fall apart, there’s more room in a broken heart…Carly Simon

The day before yesterday was one hell of a day. The appointment with my pulmonologist was to some extent a repeat performance of my last meeting with my GP.

Some may think that because this blog’s focus is on experiences (often bad) in the healthcare system and on patient’s rights that I am just angry, but in truth I’m not. Emotions are part and parcel of the human condition and I don’t shy away from them, but what I feel is more frustration, fear, and grief that although it would be so easy in this situation for those in positions of authority to make things right, instead they make the decision not to at every turn, and in their opposition they prolong physical suffering unnecessarily.

Doctors, when you see signs of disease document them, don’t just have verbal conversations with the patient and not put down a diagnosis if treatment depends on it. If you discover later there were procedural mistakes, then for Godsake amend the record! Untreated disease will continue to tap you on the shoulder until something’s done about it. It waits for noone. Leaving the patient on their own with it to twist in the wind is never the answer. If I seem a bit on edge at times, then this is why.

If you’ve ever had a pet who is injured you will understand. They may bite if you try to pick them up, not out of anger but because they’re protecting the part of their body that hurts. It is just instinct; not intent. Humans as well become quite to the point when there’s little more time to waste. This is nature’s way of motivating us to stay on task to find a way out of peril so that we can survive. When the struggle for self-preservation stops then you really have to worry.

While I am an activist this is not all that I am. Some may view me as a radical but if that’s all they see then I haven’t communicated my point effectively. I’m a mother, an animal lover, an artist, and a writer.  (The broken heart at the top is a component I cast in 22 Kt. gold years ago from a mold of my own design. The line created from it was about regeneration in the face of adversity). Most of all at the core I am soft-hearted and fundamentally believe in the goodness of people and man’s ability to change and transform. I also believe that not everyone’s path is the same, nor should it be, as we are all individuals.

I am more apt to assume that people are with me when they aren’t than the other way around. It is actually because at the core I think positively that I am like this. This is why I often give people in my life maybe more chances than I should.

I try to stay on topic in this blog because the atrocities that take place within healthcare are what I’m trying to shine a light on so that there can be social change. While I am telling my story, this is not just about me, but about so many people who, like me, end up sidelined because of a broken system that leaves little room for tolerance of differences, individual needs, and those who don’t fit the mold of what doctors, insurance regulations, and levels of government who set the laws and rules dictate. There is no manual for the human body and yet there persists the false expectation that there is within the medical field.

The chubby black nurse with lots of tiny braids came in and took my blood pressure, charted a few stats on the computer and then handed me the standard sleep questionnaire to fill out, watching me impatiently.

“He’s running on schedule so I don’t want it to eat up your time. He can’t spend an hour with you” she blurted out rudely.

I narrowed my eyes at her not knowing what brought that on. I never knew how to fill those things out anyway as my sleep/wake pattern is all screwed up from day to day. She told me to average it out, her voice growing ever more impatient.

“Is Z here today?” (another nurse) I asked her.

“No” she replied. “She’s off for a few days.”  I thought back to our last phone conversation and suddenly had an uneasy feeling.  I’d told her what had recently transpired and told her that I was going to need the pulmonologist to take over all the order writing. She understood. There was no mistake about it. She’d been open and empathetic and she was hearing me in a way she hadn’t ever before. When I asked for verification she said “Yes Ma’am” in a way that conveyed that now she understood the gravity of what I was up against.

In the past she’d told me this doctor thought for himself and didn’t think he’d buy into the buzz, but in this last conversation I remember telling her I was glad he was not one to buy into group-speak and that he was the only one left, that I was glad that he at least believed me. On that she didn’t respond to reassure me as she usually had.

I never got a call back from her regarding his answer. Then about 4 or 5 days later (the day he’d refused to do the two referrals) another nurse had responded on his behalf on the Patient Portal. When I’d asked where Z was I was told she’d asked off.

Did she know what awaited me at my upcoming appointment? Perhaps she did and couldn’t bear to be there to watch what was about to unfold and didn’t want to go along with hurting me.

Once the nurse in the office left the room with the clipboard in hand I waited in anticipation that at least he was still with me as he’d indicated on the Patient Portal…or so I hoped.

Medicine is more than the mechanical fixing of bodies. It’s about a partnership between doctor and patient and when one is chronically ill this becomes even more crucial. Often along the way that human aspect gets lost in the process. Above all patients need hope when going through a difficult and long diagnostic process and they need to know that whatever happens their doctor is there for them.

The other day even though he’d refused to write the two referrals I’d sent him the information on (Vanderbilt and the Undiagnosed Diseases Network), I still thought positively that he hadn’t diverged from me. Maybe he just wanted to see me in-person before writing any orders or referrals, I reasoned, or maybe he just felt that it was the GP who should have done this. I tried to believe that there was a reasonable explanation in every way I could.

Not long after the nurse had left he knocked briefly and entered the room.

His face was red at the top of his cheeks just under his eyes. Because I am close with him I knew that was a tell. Even still I powered through, tried my best to ignore it, thinking maybe it was just a temporary bump in the road. I had a smile on my face because I was genuinely happy to see him and I still considered him a confidant until such time as I knew otherwise. I was willing to give him a chance, to hear him out before passing any judgment. Even with some weird vibes I was picking up I couldn’t switch gears that fast and suddenly be unhappy with him. There was a history there. He had helped me in the past, maybe more than any of the doctors at Emory. I had the impression he genuinely cared.

“How are you” he asked looking at me from across the room as he sat down in his chair. He made eye contact, but I just couldn’t block out the distracting reddening in his cheeks and kept looking there instead of his eyes.

“Not good. I’ve been feeling pretty bad with this Dysautonomia not treated for the past several months. I’ve nearly passed out several times in the past two weeks.”

“You’re smiling” he said, nodding. I didn’t exactly know what to say to this or why that was significant to him. I grappled as best as I could to find the words, but failed miserably in fully explaining. I communicate better in writing than I do verbally.

“Well things went well yesterday. The nurse practitioner told me that she didn’t think I was nuts, and apparently Dr. V validated my Dysautonomia, so that’s progress.”

“You’re smiling” he said again, a little louder this time, almost cutting into the end of my sentence. I wanted to ask him what his point was but I didn’t know how. It was as though my brain stopped for a moment. I could think it but the words wouldn’t come out of my mouth. In the time I’ve known him I have grown very attached to him and in the past he has always been willing to do whatever he could to help me. All I had to do was ask. I told him just the other day on the Patient Portal how much I appreciated that, and suddenly as if the rug were pulled out from under me all that was gone.

I tried to push the gnawing insecurities aside in favor of logic. How could a strongly positive doctor/patient relationship go from 100 to zero in just a week’s time, I wondered? As I sat there across from him something didn’t feel quite the same.

“What is your understanding of the situation right now?” he asked. “Do you think Neurology is moving forward in getting the answers?” It was one of those statements masquerading as a question. I could feel it yet was unsure exactly what he was going to say although I grasped that it wasn’t good.

“Well it’s too early to know for sure. I just started with them, but Dr. V. definitely picked up on something of the underlying condition. She just isn’t sure what it is yet. She’s only seen me once, so hasn’t even had time to investigate very far before going on maternity leave.”

The pulmonologist shifted in his chair from side to side, not a good sign. “She was hanging her hopes on it being the Sarcoidosis.”

“Yes, and it turned out not to be that” I answered the question for him. The red in his cheeks continued to spread outward. “The Gallium Scan was clean” he said with almost an eeriness in his voice.

That meant it wasn’t in acute flair but he seemed to have a much more ominous take on it.

The significance for him seemed to take on an almost supernatural quality to it and I could tell it scared him. We live in the bible belt here in Georgia and one always has to consider that doctors in this part of the country may read in a religious significance to explain things that as of yet are medically unexplainable. That is yet another variable that can and does interfere with trust within the doctor/patient relationship; the good vs evil dichotomy.

“It was the inconsistency in the exam that concerned me” said the Pulmonologist, his cheeks reddening further. At this point he was looking kind of ill himself. I knew what he was thinking because doctors are trained that way.

I felt the need to reassure him that I had not been taken over by some strange evil force and that there was and is a reasonable explanation, that we just needed to find out what that is. There is a confounding variable neither he nor Dr. V were taking into account which elicits inconsistency in an exam, but the growing sense of mistrust and feeling of utter futility held me back from telling him what it was. I opted for the simpler of explanations.

“This is just the beginning”, I continued. She’s just started with me. Sometimes it can take as many as 6-8 years for patients to be diagnosed. I sure hope it won’t take that long for me, but the point is that alot of people go through this. It’s not that uncommon for things like that to come out negative or inconsistent, but at least they can start by treating the Dysautonomia since they know that the Saline helped when I was at Piedmont. That would be a start.”

It was all he could do to stay put in his chair. He seemed to be grappling within himself pulling to one side, then the other. I could imagine opposing dialogue going on in his head.

“You keep coming up with that word; Dysautonomia!” his speech accelerating and growing in urgency. “There’s no evidence of Dysautonomia.” (pregnant pause) “that’s your perception. That came from you. She said by patient report.”

“What do you mean no evidence? “It came from Piedmont” I replied. “Didn’t you see the BP stats that were entered into the electronic records system? My blood pressure was all over the map for 11 days, measuring it 6 times a day!”

“That could be anything. A cardiologist would have to determine what that is….and you need to consider that this could also be…psychological. I would recommend seeing a Psychiatrist and a Cardiologist.”

“Well it sure isn’t in my head. Believe me, I went that route first, as I had problems on my left side a number of years ago. The therapist suggested I get it medically checked out because she didn’t think it was psychological.”

“It can reoccur.” he replied ignoring the fact that I’d said it had been ruled out.

“Blood pooling in my feet? Pictures I sent Dr. B. on the portal.”

There’s no evidence of Dysautonomia. That’s your perception. They have to do tests for that!” at this point seeing he was losing this argument but sticking to his story so as not to lose face.

“They should have done that testing 4 months ago. I’ve been telling people this since I was discharged from Piedmont in November. The doctor there had a conversation with me about this. It didn’t come from me, it came from him. He just didn’t document it and I didn’t know that until I got the records later. I believe it’s secondary and that it and the movement disorder are all part of the same syndrome. They need to find the underlying condition.”

“If there is one. Why not see a Cardiologist?”, he said.

“I could. That’s another reason to go to Vanderbilt. They have specialists there and I’m sure they have Cardiologists there as well as Neurologists.”

“You could see one here… or at any place locally. You don’t need to go out of town for that.” I wondered why he was so wedded to the idea that I stay here in town for such an evaluation.

“The thing is if I went to just any Cardiologist they may be too general to recognize this. Many Cardiologists are generalists and they have many other heart related disorders to focus on. I need an expert who knows what to look for.”

“I would recommend doing it here.” I’m sure he would, I thought, beginning to feel as though he wanted to control the situation. Odd, given the fact that just a few days previously he’d taken a hands-off approach.

“Then my chronic constipation, the fact that I’m thirsty constantly, how can you say there’s no evidence?”

“That could be dehydration. Dysautonomia is extremely rare statistically.” He seemed genuinely afraid and holding onto this denial for dear life, like a security blanket, although I wasn’t sure why. The whole time we’d been talking I was drinking water and sucking on ice cubes.

“Well why am I dehydrated? As you can see I’m drinking ice water constantly. I have a cup with me at all times and yet I’m still thirsty.” He was out of excuses and just looked at me seemingly frustrated. He asked about Dr. B. and I said “He’s gone.”

“Gone? What do you mean?”

“I mean out of the picture; gone” I did not elaborate.

“He’s not your primary anymore?”

“No, he was doing me more harm than good anyway. You see, nothing was moving. My treatment was going nowhere. I tried to tell him but he wouldn’t listen. I’ve been untreated for almost 4 months now and I can’t wait much longer. It’s getting worse.”

“Untreated for what?

Dysautonomia.”

“And you really think Neurology is helping you?”

“According to the Nurse Practitioner she is supposed to be good and I was told she thinks outside the box. I figured I’d give her a chance.”

“OK then, I’ll take a back seat to Neurology then and just follow what they’re doing with you.” he replied seeming somewhat offended or hurt, I couldn’t tell exactly which. “I still think you should see a psychiatrist” he threw in for good measure.

“I just don’t want to cloud the issue. I want this looked at on it’s merits. There are several problems in seeing a psychiatrist. Every specialty tends to look for what they specialize in and they can’t bill insurance for situational problems so that motivates them to fudge and give you a psych diagnosis when you really don’t meet the criteria. Would it make any difference at all if a psychiatrist wrote a letter saying that what is going on with me is not psychiatric but medical?”

“Yes” he said emphatically, “It would help alot”. Somehow his words rang hollow as soon as they’d been spoken. I found it hard to believe that he could ever go back to the way things were before. A line had been crossed and another rung of trust broken. Even if he could go back I couldn’t. It scared me that he could so easily go from supporting me 100% to being so determined not to support me. It was like the air let out of a balloon. Knowing that deep down he was not trying to rule it out but rule it in was what hurt most of all. The way he looked at me just killed me; a mix of irritation, amusement, and pity as though I had wasted his time.

“I feel like you don’t believe me” I said. I wasn’t smiling now.

His face clouded over and he looked through me rather than at me. “Ms. Carlington” he said with a forced new formality “I need to move on” he stated dismissively looking somewhere to my right, then avoiding my eyes and looking to my left.

The first level I perceived right away (move on as in to his next patient), but then I picked up something on a deeper level.

He was officially uninvesting himself in me and though I was still technically his patient I’d clearly been relegated to the cutting-room floor.

A thousand pieces of paper wouldn’t change anything now with his resolute mind-set and knowing, that psych is a soft science and based more on individual clinical opinion than provable fact, to take that particular piece of advice and gamble with my future could put the last nail in my coffin.

 As both of us exited, he to the left, and me to the right he called back over his shoulder that I should really get a new Primary Care physician to coordinate all these specialists and I told him that with managed care and heavy caseloads I really don’t know if one would, so I wasn’t in any great hurry to do that. It didn’t work out for me the last time. He said that’s what they’re supposed to do. Yes, I thought, they are supposed to.

I went to the front checkout desk where the young receptionist with the long wavy black hair and black-rimmed glasses greeted me with their customary “Did you have a nice visit?”

“No, not so much. Not this time. I feel a bit uneasy.” She got on the phone to ask the doctor when to schedule me for my next appointment.

“Six Months” she said as she turned toward me. I winced. (It was usually more like 2-3), but still feeling that sense of futility I didn’t ask her to make it earlier, only asked if I could if I needed to, and she said yes, that he was here 5 days a week and if need be it wouldn’t be hard to get an appointment should something come up.

Yesterday Dr. V finally responded through her Nurse Practitioner, but since she’d not heard of the IV Saline treatment she told her she wouldn’t authorize her to write the order “at this time”.  None of the other items on my list of priorities (other than the med refills) had been addressed, so I wrote back and asked if she had authorized her writing the referral to Vanderbilt, and provided her several pieces of information about the treatment and contact info for two specialists familiar with it.

Yesterday I got the name of a guy at another specialty clinic out of state and am waiting to hear back, as he is out for the week. The office is supposed to call when he returns. All the pre-registration was taken care of over the phone. If I don’t see some action out of Emory Neurology soon I’ll go that route, as he seems to have diagnosed lots of people who had the same experience I’m having now and there you don’t have to have a referral. As gut-wrenching as it is to be losing doctors I’ve known for years locally I wonder if maybe, just maybe with doors closing at Emory, another window is about to open.

The Politics of Hate and Social Dawinism

Padlocked

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

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

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

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.

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

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.”

Emory; Slow As Molasses; Treatment Still Stalled

Mollasses coming out of bottle - showing level inside bottle DSC_0004

I sit here trying my best to brush out the mats from my hair that have been developing because I have to sleep more than I used to and the fatigue and muscle pain some days are just too much to brush it. Such is life for those with chronic disease and no caregiver at home to help with these types of things.

I get through each day on a wing and a prayer, hoping every day that something positive I’m working towards will come to fruition. If I could write all my own orders and prescriptions I would, as it seems now that getting everything I need depends on some MD’s name on some form or another and my doctor has decided somewhere along the way to become one more obstruction along this already bumpy road I’m traveling on. He finally wrote me back on the patient portal today to say that he couldn’t go along with the continuous saline infusion, and that he’d done all he could with home healthcare.

I can barely bathe myself although the shower bench helps somewhat. I still can’t reach everything on my body, and that’s not me, and its not laziness either. I’m very meticulous about getting clean and I don’t like it being half-assed and I like to shower everyday, but without help I simply don’t have the stamina, and because of my stiffness I find it hard (and on some days impossible) to reach my toes to wash them. I can’t reach my back even with the long handled sponge thing I got through a local non-profit organization because my arms just won’t bend in the right ways to reach where I need to reach.

Daria, the Care Coordinator told me last week on the phone that they would be glad to pick up my case again and are just waiting for my doctor to write the order and submit a plan, so the obstruction isn’t coming from them, nor from my insurance. It’s coming from my GP. Why does it not bother him that I am home alone without proper help so that I can do the activities of daily living? After 12 years you’d think he’d care that I’m here struggling and using up precious energy reserves I don’t have just to do the simplest things.

Nothing has really improved in my functionality, so why is that call to discontinue services? If anything it calls for increased services, as this disease isn’t going away in 6-8 weeks. I don’t want to deal with it either but I don’t have that luxury of just ignoring the whole thing. I still cannot do my own grocery shopping and the guy who was helping with that is getting more and more lax, getting 1 item when I ask for 3 of something, 2% milk when I asked for whole milk, fully cooked low-sodium bacon when I asked for the applewood smoked bacon that he got the last time, and running out of things and being SOL because I don’t have things needed to complete a recipe.

I find myself time and time again having to prostrate myself just to have the basic necessities and get through life. I have no family to speak of to take care of these duties, and in order for the social worker with the home health agency to help me apply for longer-term help my doctor needs to get me recertified with them. I really need a personal assistant and in order to get the Independent Care Waiver through Medicaid so I can get one he needs to send his doctor’s notes to Shepherd Spinal Center so I can get the pressure mapping evaluation for a wheelchair that will support my whole body properly. The paperwork for the Independent Care waiver asks for the wheelchair specs (in addition to other help I need) and it has to be specific, but Shepherd can’t schedule me until he sends the doctor’s notes.

In addition, the Modified Barium Swallow Test he ordered in December must be updated because the December prescription is too old. I have asked several times yet he has not done that. I told him that it’s becoming too much to have to give these constant reminders and that I need him to take some initiative and go to bat for me as my GP.

What the hell have I done to deserve this? I’m trying not to have any more medical neglect and make things come out better for the second half of my life but nothing I say seems to make a difference. No amount of self-advocacy does any good anymore. It’s bad enough not to have any control over the physical processes in my body, but then to have no control over everything else is just too demeaning for words.

It seems that these doctors see me as a non-entity and my voice is of no consequence in anything that happens in my care. They just do whatever the hell they want whether I like it or not and I’m not supposed to have any say in the matter. Well, fuck that shit! I’m a grown-ass woman and it’s my decision what is done with my body and not! They are only consultants (I like that term better than doctor and I think Australia and the UK has that about right). Who died and made them king!??? These doctors are supposed to be working for me, not the other way around. I’m getting really fed up!

I asked my GP what exactly happened that one minute he was ready to treat my Dysautonomia with the continuous Saline infusion and now he’s not and I asked if anyone at Emory had scared him out of it and if so I wanted to know whom.

If I find out Dr. M. and/or his buddies have anything to do with this I will be a ball of fire and will not rest until justice is done. I don’t need this right now as I’m trying to get to the bottom of my underlying condition and get help for it.

Just like I said to Dr. H., if a patient is suffering then treat it! It’s as simple as that. There is no excuse to sit there and allow someone to suffer when there is something that can be done to alleviate it and it’s relatively safe.

I found that this mode of treatment works for me so I should have access to it if that’s what I choose. I’m well aware that it won’t cure it, but if it will give me more energy, help my bowels move more regularly, improve my appetite and reduce GI problems, make me less thirsty all the time, stabilize my blood pressure, and make me feel faint less often then it’s worth it to me! He has given me not one good reason why he should not.

The port can be put in at Emory’s outpatient center, and home healthcare can do the infusions with their nurses, so frankly what’s the problem??? It’s not like I’m asking for a breast augmentation, this is something medically necessary so I can have some quality of life and it may even prevent an emergency down the road!

He has not come up with a better idea and unless and until he is willing to go out of his way to do the amount of reading and researching I do each day to help come up with something better then as far as I’m concerned he just needs to defer to me.

Besides, I always see the trajectory of things. It’s one of those special perceptual talents I have. At this rate I will probably end up back in the hospital. That is not the preferred way to do this. This method is supposed to be proactive, but left untreated, persistent dysautonomia can be dangerous and cause all sorts of complications. With the blood pressure readings they documented at Piedmont it would be medically irresponsible not to treat it at this point. Maybe in the past it wouldn’t have been as crucial, but now that we have that information from my hospitalization records (and I assume it’s been entered into the electronic records system at Emory) it is really indisputable.

If Dr. V’s hypothesis is right about this whole thing being caused by my Sarcoidosis then I will most likely be considering other treatments that are given by IV such as antibiotics or IVIG, and having that central line will take alot of the demand off my stomach and GI tract in addition to being useful for the Saline treatment. I’m taking about enough pills by mouth right now. If I need to switch from Tizanidine to Baclofen for my spasticity that is the quickest delivery method there is to have it work immediately. They can draw blood from it and do a number of things that will make life easier for me.

If it’s not my Sarcoidosis that is the underlying condition differentials could be one of several Atypical Parkinsonian Disorders such as Multiple System Atrophy (MSA) or Corticobasal Disease (CBD). It was uncanny how many of the symptoms I have that fit the description of either. It was also interesting that the neurologist who gave the lecture in the Youtube video said that they have some symptoms in common with ALS. If I have one of those then it makes perfect sense as to why one might think it was ALS initially. Apparently these other two are even less publicized so they can often go longer than ALS to be detected and diagnosed. These can cause Dystonia, Dysautonomia, and Myoclonus.

Today I was in such agony I could hardly stand being conscious. It was one of those days one would have to die to feel better (and I’m sure those of you reading who have chronic illnesses know how that is).

My face and body were hurting really badly (that same “feel the burn” feeling I had back in August along with inflammation), I had alot of nasal congestion, the roof of my mouth ached, I was nauseated and had colon spasticity. I had to take Tizanidine and my Tramadol and Ibuprofen and sleep it off before it finally let up. I also had more fasciculations in my big toe on the right foot that lasted quite awhile after my nap.

It’s Wednesday and still no call from Radiology to schedule the Gallium Scan. I called and left a message for the nurse to call me and let me know what’s going on and when I can get this done. I hope Dr. V. didn’t go on maternity leave and forget about it.

Yesterday I got stuck lying on my back and couldn’t turn myself for at least 10 minutes and nearly had another fall when I finally managed to roll my bottom half off the side of my bed. This happened alot in the Summer and Fall and I thought it had stopped but looks like it was just taking a temporary break.

I’ve also noticed my jaw dislocating, and cracking in my jaw and in my cervical spine over the past week or so. That needs to be looked into. I asked him to order an MRI of the jaw and sent him exact specs for how that order should be written to get the best view of it. We’ll see what he does with that. I also asked him to get a copy of the first imaging that was done 10-12 years ago by the oral surgeon at Emory which showed I had TMJ so that we can compare and see if there has been further degeneration.

If I take the time and energy to go in to see him and come up empty-handed I am going to be pissed! I expect these orders to be done, and I think he should also have reached out to the movement disorder specialist I’m seeing in July to help facilitate and give him some history and try to make this as easy for me as he can so that the experience will be fruitful and so I’ll be treated with respect.

If my GP conveys to the movement disorder specialist that he’s behind me 100% then it is likely that I’ll be treated well and that the specialist himself will put 100% into diagnosing and truly helping me so that I can come home and not have to continue to prove myself ad nauseum as I have had to up until now. That is probably the most tiring thing I deal with on a day-to-day basis and its high time that my condition be given the credence it deserves. I did not ask to be sick nor to be poor and I believe everyone should have access to the care they need for their conditions no matter what their station in life. It’s just a matter of dignity and humanity. At the very least these doctors should take care of these medical problems expeditiously and give me the best quality of life possible under the circumstances of what my limitations are.

Tomorrow I am seeing my liver specialist. My liver enzymes have been elevated chronically now for about 8 or 9 years. I think at this point they need to do more than monitor it. A test result doesn’t keep cropping up like that for that long for no reason. It’s there to tell us something of significance. If it’s not my Hepatitis B reactivated then they need to find out what else it is. Maybe my liver can elucidate some useful clues in solving the other stuff.

I’ve pretty much run out of patience with all the diddling around and delay tactics. I’m quite sure if I had money and top of the line insurance I’d have a diagnosis by now and would have been on treatment for years by now, and maybe I wouldn’t be near as disabled as I am currently. There’s alot of rationing the doctors never tell you goes on which determines how aggressively (or not) they treat a condition.

The poor die silently of medical neglect every day and for the most part it never makes the news. I do not want to become one of those statistics.