Tag Archives: disability rights

More Delays on Out-of-town Specialist Appointments

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Ain't It The Pits - Photo for WordPress Blog DSC_0023

Nothing about this diagnostic process has gone smoothly, but transportation was the one thing I thought was wrapped up. I’d called Southeastrans (Medicaid’s transportation broker for this area) a month ago to find out what the process was and was told that they’d schedule these out-of-town trips just the same way as they did the in town trips; that I just needed to call their main scheduling number and they’d set it up.

Meanwhile I set about requesting all the necessary medical records (two discs for each of the two doctors). 

The sleep study tapes were elusive and I found out that Radiology nor Medical records has those accessible; that they were handled by another records department connected with Sleep Medicine. After about a full 2 days I finally got routed to the right department, but initially only the latest sleep study (July 2015) was showing up in the computer database. I had 3 sleep studies in all (each of which yield important data that any top level specialist will be able to see the significance of in the diagnosis of multi-system disease). Researchers who are up on the latest medical knowledge understand that sleep studies are often the first sign of such disease processes and they give important markers that may not be fully detectible via other tests for years. Finally after much searching around somebody suddenly located the other 2 tapes and I was told they were being copied onto dics as we spoke. 

I suddenly found that people who answered the phone in the various departments and call centers were greeting me in an uncharacteristically friendly and helpful way, asking if I were “having a good day”, some almost as if they knew who I was, and this time when I called to schedule my follow-up appointment with Dr. V. the appointment went through! Suddenly people were actually returning my calls again and they were not proxys but those whom I had asked to call me back!

It remains to be seen whether or not everything is unblocked now since they received my cease and desist letter. I hope it is and that I will have no further blocks on my scheduling from here on out. I have since received no explanation via Patient Relations nor from Administration directly as to whom initiated the block and the circumstances under which their Chief Medical Officer was called in.

Good old Dr. H. the pulmonologist may have helped me much more than he knows. Even if he (the subjective human) has or had doubts in the short-term about my underlying condition(s), his objective data reveals important tuths that can’t be denied. Within these studies could lie the key to my underlying condition(s) and when viewed by the right specialists who understand patterns and correlations it could be my salvation, and will very likely get my treatment back on track.

Maybe in time he will come to understand that his hunch about a central process in the Pons and/or Medula was correct all along. (Afterall, that was one theory as to why I had the slowness of muscle transmission in my left leg EMG results). Not that anyone would want something to be wrong there, but sometimes a doctor’s admitting he was wrong in his doubts of his first instinct and the patient’s instinct is the best thing for the patient and for the doctor/patient relationship. If the underlying condition(s) can be identified, caught early enough, and treated with the best science has to offer, maybe all’s well that ends well, and all of us can go home satisfied.

I have always and will always maintain that my team of doctors need to keep their eye on the ball and avoid becoming waylayed and distracted by other agendas. The doctor/patient relationship is paramount, and anything that stands in the way of it must be removed. Such distractions are exactly that; distractions, and must be put aside if one is to serve the best interest of the patient. This is an ethical and moral imperative above all else.

There is enough evidence now that something serious is going on in my body, and so I hope from here on out my doctors can dispense with any questions they may have had in their own minds as to that reality, so that we can put our collective effort into finding out what that is.

Well, back to the transportation issue which pulls all this together; I called Southeastrans last week to set up the trips to these two out-of-state specialists and suddenly got the response from the scheduler “We don’t do that.” The scheduler got her supervisor on the phone and she told me that even my Florida trip was too far for Southeastrans to travel; that their broker system only takes people within a 50  mile radius. She did not know of anything else. My heart sank. Knowing that this is a major consideration and that I cannot afford to cover transportation out of pocket with my tiny Disability check amount, I persisted, asking what the process is to get it authorized, as I knew I’d heard from other patients that they were covered for longer-distance trips, especially when their home state did not have the proper testing facilities and specialists and were at an impasse. Surely they couldn’t just leave indigent patients up a creek without a paddle.

The hotel in Cleveland Ohio has been booked, appointments have been made, and records have been ordered on disc, along with many hours of logistical telephone calls, blood, sweat and tears on my part. I have done the majority of the work myself to facilitate these independent evaluations and I was going to be damned if a technicality so idiotic would stand in the way now. I called the Medicaid Commissioner’s office whose aid then put me in touch with another department and there I spoke with a man and a woman who basically told me it was not going to be a problem; that all I had to do was have my doctor fill out a form with a foundation affilliated with Medicaid that would cover airfaire, lodging, and food for my trips, but advised that my doctor start the process right away since time is running short.

I’m supposed to be boarding a plane bound for Cleveland, Ohio on July 6th, come  home Monday afternoon the 11th, and then head out to Gainesville, Florida early the morning of July 13th to arrive there at 9:30 AM for a full day of testing. It required my scheduling the Cleveland Clinic appointment 3 months in advance, and the one in Ganesville, FL, 6 months in advance. All their other doctors were booked a full year in advance, so I was lucky to get an opening in 6 months as it is!

I couldn’t imagine there would be any problem in having Dr. V. fill out the certification form so that this  non-profit organization could ensure these evaluations came to pass, but I was wrong in that assumption.

My detailed message containing the process, foundation’s phone number, and my necessary information sat on the Patient Portal for about 2 days un-forwarded (Dr. V. was unaware of its contents since somebody else needed to forward it to her first). As soon as I realized the doctor had not received it herself I called by phone and was told by a representative in “Brain Health” that she would then mark my message “high priority”.

Soon afterwards I received a reply with a nurse’s name on it as though she were forwarding a message from the doctor asking me to ask my new GP to fill out the form instead (the new GP who does not work for Emory). I could not believe this! There is no time to waste, and besides, why would Dr. V. not fill out the form when she herself wanted me to have these consults? It didn’t make sense. This is one delay that could throw a monkey wrench into the whole thing, and I don’t know how long it takes to process once the doctor does fill it out and submit it through the proper channels. My first date of travel is about a week and a half away (not counting weekends), and nothing is nailed down yet! I wrote back saying I would ask the new Primary Care doctor (Dr. P), but that if she says no and feels it’s the job of my neurologist to do since these are neurological consults, then I will still need Dr. V. to do it. I impressed upon her that time is ticking away and I can’t afford for anything to go wrong. I have not put in all this work and effort just to lose this opportunity.

With no local autonomic clinic close by, and my abnormal movements being not your average garden variety movement disorder, these doctors (if they care about me) should move heaven and earth to see that I make it to both appointments and do everything they can on their end to make it happen. It’s just the right thing to do. 

After I got off the Patient Portal I immediately wrote a letter to my new PCP with the same request I’d sent Dr. V and faxed it to her. I have since found another fax number on some other paperwork from her office and am faxing it to that number as well (to make absolutely sure she receives it).

I hope to God that when I follow up on Monday that I’m told it’s been done and being processed by the foundation that issues the funds and makes the arrangements and that all this will be in time for it to go off without a hitch! It has to! I don’t think I can wait another 3,6, or 12 months to reschedule and arrange this over again.

Last week some nice person in one of my chronic illness groups sent me the link to another woman (this one in Colorado who had received a letter very similar to the one I received from the Chief Medical Officer. This patient is a civil rights attorney.

It seems as though these big healthcare corporations are devising boilerplate FU letters to send patients when they’ve messed up and mismanaged somebody’s care and want to shift responsibility. Such letters are very unwise. The thing is, they will not hold up under federal non-discrimination laws and patients will prevail. Any legal department will clearly see that and advise the corporation to retract such actions.

It’s always a wiser tactic to do the right thing when you realized you’ve F’ed up a patient’s care and do something to correct it and satisfy them from that point forward than to follow one bad decision with another, follow one lie with a bigger lie. In the end no amount of money or image is worth covering up wrongdoing and throwing the patient under the bus. This is the care of human lives we’re dealing with here, not inanimate objects. Earn that image and you’ll have no problems.

There really is something to be said for going that extra mile for the patient rather than doing the least you can do or standing in their way. In healthcare even more than other businesses, true customer satisfaction is very important.

I sincerely hope that Dr. V. will come through when all is said and done and that she will have safe passage to help me maximally, unfettered by competing interests and unbeholden to her employer. As I said earlier; the doctor/patient relationship is paramount. I want to trust that in the end she will put my best interest first no matter what comes. I cannot be let down by one more neurologist.

Emory Patient Banned for Giving Negative Feedback

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

Medicare Home Infusion Site of Care Act of 2015; S275 HR 605 – Your Support is Crucial

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As we speak new legislation is being proposed which would help many people obtain IV Saline infusions at home; the Medicare Home Infusion Site Care Act of 2015 .

Bettemarie Bond, a patient with Dysautonomia including a malfunctioning GI tract, and Mitochondrial Disease, once able to obtain these helpful infusions, suddenly found herself unemployed and on Disability and at the mercy of the Medicare system for all her medical needs. No longer covered by her previous employer’s private insurance, the stark reality hit her full in the face as she realized that she was unable to obtain them.  

Her self-advocacy led to the launching of a grass roots effort in her hometown in Philadelphia to get Medicare to cover home infusions. Little did anybody know that her online petition would gain such traction on a Federal level and interest some key legislators!

Kendall Van Pool, Vice President of Legislative Affairs for the National Home Infusion Association,  wrote an article here which goes into more detail about this ground-breaking piece of legislation and a few other related bills.

The original bill, HR 2581 contained verbiage which would not have allowed infusion at home, as it would contain a change in method of reimbursement referred to as Average Sales Pricing (otherwise known as ASP). This is a reimbursement method that applies to physician reimbursement (and in particular applies to delivery in an “outpatient hospital” department). Falling short of true access by patients who are often homebound, several legislators were concerned that such legislation as the first version was too restrictive in not allowing patients the choice to be treated at home with this modality.

Next came HR 6, the 21st Century Cures Act. Chairman Fred Upton (R-MI) of the House Energy and Commerce Committee is hopeful that this version passes in the Senate.

To contact Kendall Van Poole you can call;

(703) 838-2664 or e-mail him at Kendall.VanPool@NHIA.org  

An election year; 2016 could be just the right time for Congress, and thus Medicare, to fully embrace this option if enough patients, families, and healthcare professionals come out in strong support of this exciting new legislation to give patients more choice and flexibility in their treatment and in what setting it’s delivered.

Those of you who follow this blog regularly know that this is something that has helped me when I was hospitalized in November and that my struggle continues to obtain regular IV Saline infusions at home for my Dysautonomia. As my gastrointestinal difficulties continue to increase I am finding it difficult to add any more pills to the growing number I must take by mouth. My GI tract really can’t tolerate anymore by mouth, so for people like myself and Bettemarie Bond, going the IV route makes better sense than to try to force more pills down one’s throat into a stomach which is already compromised and most likely not absorbing what it takes in.

For those who can get it IV Saline can make a notable difference and allow one to enjoy life despite one’s chronic illness, while those who cannot get it often suffer a long and agonizing medical decline and de-morale as they continue to find these infusions always just out of reach and at best short-lived while only receiving them in an infusion center or within an inpatient setting (insurance or money permitting).

Notice in her video clip above that Bettemarie says she had her heart rate drop during a procedure. This just happened to me today as I was having a Colonoscopy. I had a really rough time even before going under mild anesthesia; suffering chills, dehydration, and changes in heart rate, as well as Myoclonus triggered by the body’s inability to keep me warm enough.

Ironically the nurse who had hooked up my IV saline before I was taken to the room where I had my procedure had in her haste not secured the tubing to the IV and another nurse found me bleeding all over the bed and the Saline half empty leaking on the sheets. Having gone through drinking the prep (which invariably strips one of electrolytes) and then not drinking my usual 24/7 ice water in the few hours prior to the Colonoscopy left me all the more in need of all the Saline I could get. I had to fight to get the nurse to wait in recovery for the last bag to finish because she was in such a rush to hurry me out the door and to fill the bed with another patient. It was as though I were a car at the local Jiffy Lube rather than a human being in need of care after coming out of the Propofol.

It didn’t seem to matter how many times I reminded them of the fact that I am Dysautonomic. It was as though their biggest concern was for their employer and the dictates of the facility, not so much for my best interest. I found it crass that they were more invested in meeting a quota of patients served per day than in serving the individual patient with the dignity and care that all human beings deserve. (I will say that the one man in anesthesiology who mentioned my heart rate dropping was an exception to the otherwise high-volume/low quality workplace. He did go out of his way to make me as comfortable as possible given my complex medical fragility, and for that I am thankful).

Let’s all work together to make this legislation the law of the land. Leave a comment, share, write your representatives in Congress, and/or CMS and HHS, and sign the petition so that the Medicare Home Infusion Site Care Act can improve the lives of Medicare patients who need/benefit from home infusion. Although not a cure, these infusions can make life more meaningful and reduce suffering until cures can be found.

A Strange Irony

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

Treatment Stalled Again Because Of Emory

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Running Out of Time - Hourglass

Treatment has hit another snag and it’s precisely because of those medical records from Emory; both what they say that is false and what they don’t say that is true. The worst of both worlds. What good are medical records anyway? Isn’t the whole point to help the patient? And if they actually sabotage a patient and prevent them from receiving the care they need then what?

 I wonder how long I can go without treatment before this again becomes an emergency. I am so overheated there isn’t enough ice water in the world to relieve it. I can’t seem to stay cool enough and I sweat around the hairline and in other specific areas of the body. It’s strange because it’s not my entire body that sweats, just certain parts of it such as lower back and my face and scalp get spontaneously oily. I change positions but that only helps temporarily. Holding my glass in my hand helps to a certain extent but it also melts my ice faster. Although I have my wheelchair next to the bed even getting in it to go to the kitchen is exhausting especially given the fact that I still have no neck support and am sitting upright. Me and gravity don’t exactly get along.

The weekend was absolute hell with cardiac events waking me up two nights in a row, several times each night with my heart pausing and then straining to beat slowly and haltingly. The only way to prevent it is to stay awake in the wee hours of the morning and even that doesn’t always keep it from happening. It often flairs really badly at around 3:00 AM – 6:00 AM.

My gastrointestinal symptoms have been quite erratic lately and I have noticed loose sticky stool yesterday and more urinary retention. Oddly when I peed it was as though I really wasn’t feeling it coming out. It wasn’t numbness in the usual sense, just lack of sensation or greatly reduced so I was unaware of just how much was actually in there. I had to consciously push with my abdomen to get it out but it was quite alot.

Then later I started noticing some fecal odor and leakage from the back end and have had to change underwear on a number of occasions. It’s not diarrhea but some sort of brownish greenish clear liquid. Sometimes I see it when I wipe myself on the toilet paper too.

I’ve been waking up each morning with headaches that are so debilitating I can’t move sometimes for an hour before the pain lets up enough even to sit up and get more ice water with which to take my pain medication.

My eyes continue to be dry and the skin on my arms is taking on a distinctly crepe look. I must still be dehydrated. The water I’m drinking and salt intake just aren’t processing through the GI tract.

Change is Coming; Our Bodies, Our Choice!

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Momentum is building within the chronic illness community and as the numbers reach epidemic proportions we are rapidly becoming the majority and becoming a formidable voting block as well.

As patients we are taking our health into our own hands and insisting upon the respect and dignity we deserve in forging our own path to wellness…and on our terms. As we become more and more educated the traditional medical hierarchy is increasingly proving to be outdated and non-applicable given the current state of affairs.

This is our life and our body that we live with 24/7. The doctor who treats or fails to treat can go home and turn his mind to other things, whereas whatever treatment decisions are made will follow us, the patients, when we return home. These decisions and the orders or lack thereof surrounding them often determine our level of relief or suffering. Our doctors, (while well-meaning in the best case scenario) cannot fully ever grasp what we deal with on a day-to-day-basis, so in fairness they need to acknowledge and give reverence to the truth that nobody can know the workings of our selves better than we ourselves.

There are many things no medical textbook can teach you.

In the real world organs in the body don’t always work that way, and to insist on believing they must is to deny the patients’ very humanity. One cannot approach the human body the way a mechanic approaches a car. We are much more complex than that. Human beings are both consistent and inconsistent. That is what makes us human. Unlike machines we feel everything that is done and not done to our bodies and to our minds. This in turn adds to our physiology for better or for worse.

A good and wise doctor understands that he/she must not ever eclipse the patient, but instead be a good facilitator and advocate for that individual and always fulfill a supportive role throughout the course of the patients’ life, not to decree, mandate, or gate-keep, but to pave the way for their patient’s own individualized path to healing to the best of their ability, to remove obstacles and never to create them. The patient, especially the complex chronically ill patient’s life is hard enough. The goal should always be to make it easier.

Ethics demands that the doctor/patient relationship in today’s modern society be one of equals, a partnership toward a common goal, while always remaining mindful that the patient has the final say in the body which the patient alone owns. This philosophy must also extend further than the office of the primary care physician and carry over into all areas where medical professionals exist.

Doctors, healthcare systems, medical schools, conferences, and regulatory decision-making bodies can no longer afford to shut us out, put us off, nor deny us an equal place at the table. We are becoming a force to be reckoned with and a strong source of information  not only of help to ourselves and our fellow patients but also to doctors, residency programs, and continuing education programs. It is often we, the patients who dig up the research papers, find the links, and connect the dots our doctors don’t have the time or interest to seek out.

We, the patients notice shifts and changes in our bodies that provide clues the doctor might otherwise completely miss. Without clinical symptom monitoring and record-keeping a doctor often has no way to know even what tests to run or where to start looking. Listening to the patient is probably the most important part of reaching an accurate diagnosis. This is why it’s so much more difficult to treat animals and small children because they can’t tell you what’s wrong.

This is also why perceiving a patient as an unreliable source is so dangerous. They are capable of telling you what’s wrong but if you don’t believe them on a core level you are dismissing and/or throwing out important information you need in order to assess, diagnose, and treat them.

For true equality to happen first doctors and the institutions that train them must acknowledge the need for change.

It is one thing to be ignorant of new knowledge, but quite another to refuse to allow it in and instead stubbornly hold onto one’s ignorance.

Patients’ Lives Matter

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“First they ignore you.
Then they ridicule you.
then they fight you.
And then you win.”

This saying has often been attributed to Ghandi but some version of it has been repeated by a number of people in activist movements the first of which is believed to have been Nicholas Klein of the Amalgamated Clothing Workers Union said in 1914.

It is especially fitting now for as I’d suspected the offending parties are in fact reading my blog. I got confirmation of it today in a letter dated March 21st, the envelope of which says “Administration”, and inside top left-hand corner says “Office of Quality & Risk”. Apparently T.Js Supervisor decided to write and tell me to shut up, himself. He says and I quote; “This is a response to the various concerns you have continued to raise to several individuals within the Emory system regarding your medical care and treatment at Emory University Hospital on December 3, 2015. At the outset, I emphasize that we thoroughly investigated your complaints properly considered your requests, and responded in writing to them. I direct you to the response letters from Emory regarding these matters. Further, we have performed additional reviews after learning you were not satisfied with our response.”

Interesting he should say they’d done “additional review” as all I was told by TJ in her nasty, unsolicited and retaliatory phone call was that she’d already finished her “investigation” and that “nobody is going to call you back”, (before talking over me and rudely hanging up). There was no chance to ask any questions or raise further concerns, and it was clear she in no way wanted to accept any more nor to help solve any. That was the last correspondence I had from anyone in that capacity.

I received no letters showing any evidence of further investigation nor were any of the gaps addressed in their investigation that I’d pointed out. Many questions remained unanswered and he never returned phone calls I’d made to him when I got the initial response showing that his subordinate had not done a fair and complete investigation. Then he goes on to say; 

” While we remain apologetic that you have been dissatisfied, please know that our conclusions and decisions regarding your aforementioned complaints and requests have not changed since the time of the response letters. Please also understand that you continuing to raise the same complaints and requests to different individuals within the Emory system will not change our conclusions and decisions regarding these matters.”

So in other words he as agent for Emory will not remove the libel from the ER record, amend the record, bar the offenders from accessing my record, nor take any other actions to protect me as a patient, nor take any disciplinary action against those who participated in the abuse and neglect even if the CEO himself were to insist on it. (That was who’d I’d written by the way; the head of the corporation. I did not know at that time there were two; one for the University side and another for the medical side, so I mistakenly wrote the wrong one first and then was directed to the one for the healthcare side).

 Then he goes on to say this…”If you have any new or additional complaints or requests regarding any medical care provided to you at Emory at any time, please let us know. As we have done with your complaints and requests up to this time, we will thoroughly investigate the complaints, properly consider the requests, and respond in writing to them. We have assigned Ms. T.J., Manager of Patient and Family Advocacy, as your point of contact regarding your complaints and requests. Ms. J can be reached at (phone number).”

As it will be when pigs fly before I ever enter their ER again, Ms. T.J.s “services” will not be needed. She is not allowed to tamper in other areas and if I catch her doing so it is a further violation. 

He goes on to say;

“We do ask that you focus and limit your communication to Ms. J so that we can ensure none of your concerns go unnoticed and so that we can manage your communications with us in an efficient and effective manner that does not detract from our goal to provide quality medical care and services to our other patients and families.

We are aware that you have posted and discussed online at patientsrigtsadvocate.com your complaints and requests regarding your medical care and treatment at Emory. While we respect your right to express yourself, we request that you remove the specific references to Emory and our personnel. We also encourage you to direct your complaints and requests to Ms. J in lieu of posting them on your online blogs.

Moreover, as we have stated in previous correspondence to you, it is our expectation that our patients have positive experiences while under our care, and we deeply regret that we disappointed you. If you truly remain  dissatisfied and feel that we at Emory have not appropriately met your expectations, please know that you can always seek out your medical care and treatment elsewhere. We do thank you for reaching out to us to express your concerns and for giving us an opportunity to look into them and to continue respond to you.” He then signs his name, LOL.

OK…Now let me get this straight…

First they neglect and abuse me in their ER, then libel me in my records, then refuse to correct their rights violation, turn my own doctors who I’ve known for years against me, play all sorts of dirty tricks to cover it up and sabotage my treatment at Emory and out  and because I write about my experience in my blog he wants me to remove it? Aaaah…Nope, I don’t think so. After a full and complete investigation I find everything to be correct and complete as is.

So sorry you aren’t satisfied.

But hey, if you really did nothing wrong then what are you worried about? I stand on  my principles.

One has to wonder why little old me, one patient in the entire Emory system has that much power that he implies to warrant that sort of extreme knee-jerk (sorry for the pun) reaction (just a strong reflex, I guess).

Me thinks maybe there’s something a bit deeper going on which has nothing to do with me and that even I do not know.

Oh, and the best part…I’m starting my treatment very soon! (from someplace else that is taking me seriously despite all the dirty corporate  tricks and  unprofessional  attempts to distract, dispute, and derail me from my goal).

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

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

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

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

“It could be worse”

“Are you still in bed?”

“You just need to change your attitude“

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

“A pity party”

“wallowing“

“Move on“

“Suck it up“

“Don’t let it bother you”

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

“You’re doing it to yourself.”

“Complaining is only hurting you.”

“Just forgive.”

“Stop being so negative”

“You don’t look sick”

“You just need to exercise more.”

“Pain is unavoidable, suffering is optional“

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Dare I Hope?

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Hand drawing back branch

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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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.