I do not think I have ever tried to pass myself off as worse off than others or most, or that I suffer from terminal uniqueness (at least I hope not). I try very hard in my attempts to remain objective about myself, my surroundings and the troubles that seem to befall me.
I am more than well aware there are others out there that are much worse off than I. I am aware that complaining gets one no where, however, sometimes I wrote stories regarding my condition, not for sympathy, but for feedback. That maybe someone out there could see something, suggest something I had overlooked or not thought of since I am in the thick of it, (so to speak).
Then, of course, there were days I just needed to rant, let it out before it ate me alive. Being as isolated as I am from the tangible world, my only ‘social activity’ stems from online contact with acquaintances and friends.
After all, I am human, we are social creatures, as much as I hate to admit it, even I (who usually prefers the hermit lifestyle), needs contact with other humans on occasion.
So here I am, back again to rant and roll, write and tell tales, inform and be informed.
My latest experience with the ‘healthcare’ system here in the Seventh Ring of Hell screamed to be let out.
Since moving here to Delliveranceville some 5 years ago now, I have had the misfortune of being thrust into a healthcare system made up of physicians who received their M.D.’s from a McD’s Happy Meal!
Now I have had my primary disease – Brittle asthma (type one and 2 combined), for 38 years. I am familiar with my disease and my medications. I am an informed patient – something I discovered is really irritating to the Doctors here on the sandbar. I have had 4 different primary physicians in as many years with 2 different alleged ‘specialists’.
I have driven as far as 100 miles in hopes of obtaining the services of a professional and capable Doctor – to no avail.
I have had physicians who, at first, seem to be competent, understand the severity of my disease and the delicacy of treatment and the ‘fall-out’ I suffer from 2 decades of dependency on dangerous, nevertheless, necessary treatments. Yet, after the initial few “get ta know ya” visits, I discover the Doctors have mislead (to put it politely), me in their qualifications to treat me and my disease(s). As a result they have set back my treatment and progress I had gained prior to my moving here by decades. Yet, their ego will not allow them to admit how unknowledgeable they are about treating someone with such a complicated disease and the consequence has been disastrous, to say the least.
I would like to share with you each one of my experiences in a series of posts. My main purpose is to vent and perhaps inform/warn those of you who have not yet discovered the dysfunctional (at best) healthcare system we are forced to endure as average citizens.
My first, so called pulmonary specialist took issue with the fact that I had cats and dogs at home (which I am allergic to). I endeavored to explain that we have a Sanctuary for abandoned animals; this
After this bit of learned information he treated me as if the root of my asthmatic problems stemmed from having these creatures around me and that if I did not get rid of them he could not help me. Can anyone say ‘healthism’?
My Allergy and Immunology specialist back in AZ was well aware of this and worked around it realizing that the loss of my companions would do far more harm than good.
My AZ doc also worked around a few issues that seem to disturb the physicians here so much so that they refuse to treat. It appears to me to be quite prejudicial.
He also did not recognize some of the terminology one uses in describing tools, devices and medications that are commonly used my asthma patients; like nebulizer. This also vexed me. As it turned out my concerns were not unfounded, his seemingly casual lack of knowledge would easily have killed me had I been an uninformed patient.
Plain and simple, no exaggeration, had I not known the consequences of withdrawing from a corticosteroid to abruptly, as he advised and insisted, even after my attempts to tell him about the onset of the withdrawal symptoms, I would have died as a result of listening to him. Instead I did what I know how to do when it comes to prednisone dosing and the withdrawal symptoms abated.
After this near disaster, in all his megalomania, he would not (could not) admit his error, so I fired him and sought the counsel of an attorney, this was (at least to me) a clear case of malpractice and patient neglect.
The esteemed attorneys’ response was: “not only do you not have a case because you are still alive, but we do not sue our neighbors here.”
So, had I in fact, followed this inept Doctors advice and actually died, I may have had a case, IF the attorney felt my death outweighed the rule that “we don’t sue our neighbors here”.
This would just be the beginning. This Pulmonologist was one of 2, which coincidently worked out of the same office, which could be considered ‘local’.
Just an aside for fairness, I did also see his partner (in crime). On one of my visits with him I expressed my concern with the abnormally high dosage of prednisone they (him and his partner) felt I should remain on, which was some 55mgs higher than what I was on before I came under there care. Consequentially, I began gaining weight (which is a major adverse side effect of taking this medication). This other ‘specialists’ response was “consider yourself lucky, I have some patients who weigh 500lbs.” This was not the answer I was looking for, nor expecting.
So, I figured it was time to extend my selection out of the ‘local’, polluted doctor pool, and researched Doctors across the
Out of desperation, I took the name, number and address…He was located 90 miles away. He also had a reputation of a poor bedside manner, which bothers me very little IF the Doctor knows what he is doing.
In my next post I will share with you this ‘train wreck’ of an experience…
Part 2
This next ‘specialist’ was located some 90 miles away, across the Bay bridge with its $20 toll….So before even reaching the Doc’s office I am in the hole.
Upon meeting this physician I am no longer curious about his ‘bedside manner’, which as long as he knows what he is doing I really don’t care if he is nice about it or not.
He clearly stated he would much rather buy me a plane ticket to
He made up an injectable serum right there on the spot, the problem was finding a Doc to administer the shot since driving 90 miles each way once a week was a bit unreasonable.
He also made some startling statements with regards to my prognosis; he did not think I would live another 5 years if I remained on my current path (after the destructive treatment received from the “local pulmonologist” across the bridge back on the sandbar. He made this blatantly and uncompromisingly clear, and frightening.
He also found it a necessary part of the diagnostics to send me to the University hospital in
When I made the appointments for the multiple tests, I was informed that I would be staying over at least one night in their hospital. These arrangements were made a month in advance; this was going to be quite the endeavor. It is a 5 hour drive to this teaching hospital. I called numerous times to verify this whole “overnighter” business, but I was assured that I should pack a bag…
Come time for the appointment I left at 3 am to avoid all the major traffic in the bigger cities I would be passing through –
When I arrived at my specified location and Doctors office to begin testing, with a rather large duffle bag in tow, I was questions why I had brought luggage….SH*T!
I explained the entire “overnighter testing session” I was supposed to undergo, and I was promptly informed this was not the case, and this was not scheduled for me. So, for the rest of the day, I had the enjoyment of lugging my rather heavy bag about the campus as I was forced to walk about with map in hand to various different wings for testing. In my opinion this did not bode well, and it also exacerbated my asthma and was wondering if I would not be admitted because of this anyway…
However they did not seem too concerned with the fact that I was blue and breathless, so off I was sent to another facility down the street a ways, I could drive there. It was for an MRI or something….at this point having no cash, (not thinking I would need it to stay at a hospital) I was starved and thirsty…after they did their scan I was informed they ran all the tests they could so I could be on my merry little way back to my rural no where town. Which by now I must confess sounded great, except for the 5 hour drive ahead of me during rush hour?
Being extremely disgusted the entire way home, I felt I still had not found the correct Doctor…to add insult to injury even after several calls I never did get the results of the tests I completed that horrid day….
So off to find a less fatalistic Doctor…maybe this time I would head north towards
The D.O. that I ended up with was referred by word of mouth from a friend of my fathers, whose wife worked for this particular Doc, who hereafter I will refer to as ‘Mule Man’, because in his waiting room the only magazines and pictures on the wall consisted of mules….he had some odd thing with mules, they were everywhere in his office, along with the occasional hunting magazine (which did not bode well for me either).
This fellow was not real interested in treating his patients, he just wanted to keep them coming back and paying the bills.
So rather than having me do a physical, he asked me what my diagnoses were and what treatments I had been receiving.
I thought this was easy, I tell him what to do, and he’ll do it…
I gave him the list of prescriptions I was currently taking and he got out his pad and began writing. I discussed my desire to get my prednisone dosage back down to a reasonable level and he concurred 60mgs a day was a bit much, so he referred me to yet another specialist.
This one located to the north, and he was and Allergy and Immunology guy, once I saw him, he and mule man could collaborate to decrease my steroids safely…
This all sounded wonderful, an a bit too good to be true?
I went to this second so called specialist, who also took it personally that I ran an animal sanctuary and was unwilling to kill off all my cats and dogs to aid him in his treatment plan.
Now I have been considered and diagnosed with depression long before moving here to the
Here is where I confess my greatest sin (at least according to the Doctors), I smoke, I enjoy smoking, and until such time as I am no longer homicidal, suicidal, severely depressed and anxious, I see absolutely NO logical reason to quit. It is my educated opinion that not only am I much safe (and nicer), my family and the world at large are much safer that I continue using this crutch until such time as I am sufficiently stabilized to manage renouncing this sin of sins. I am more than well aware that this little habit of mine does not help my condition any, but what the Docs do not seem to grasp is that I endured this affliction for many, many years BEFORE I began smoking, and my condition did not alter either for the bad or good when I began this so called filthy habit.
Again the ‘specialist’ took these two personal items as a personal insult and it reflected in his lack of interest in my case, and the manner in which he treated me medically and personally whenever I had an appointment with him…
It became a custom for him to make degrading and disparaging remarks to me regarding my appearance, even once suggesting plastic surgery (to a patient on Disability?). This is where; once again, I was forced to part ways with yet another one of the finest physicians the area has to offer.
Left to depend solely on the mule man to continue to allow me to tell him what I needed and when, and he stand ready with Doctors orders to send where I suggested they be sent for testing, treatment and/or prescriptions.
This ‘relationship’ worked well for about 3 years, when he up and informed his patients that with a month’s notice he would be closing his practice….URGH!!!!!!
I still know no one, therefore word of mouth referral is out of the question, the phonebook, well, and I already worked my way through the Virginia side of the border (on the sandbar), and it was no all a matter of how far was I willing and able to drive for another doctor…
I was already at the 45 miles each way marker…
So, the Torture continues…this was over a year ago…and I did, eventually find a replacement for mule man, and I shall tell you about her tomorrow….
Part 3
The latest Doctor was referred to me by one of the gals that worked in mule man’s office. I thought (foolishly) this could not be any worse than what I have already endured; after all I really did like all the women/nurses who worked for/with mule man thusly I thought they would not steer me in a wrong direction.
The initial visit was impressive, so much so I felt relief for the first time since moving here. My new Doctor was a ‘she’ which was a bonus point from the get go.
Secondly she spent at least an hour with me on this first visit, making sure to cover all my health issues, past and present. I was stunned by her thoroughness.
I clearly defined and explained all illnesses I was currently experiencing and medications I was taking for them; what other specialists I was seeing for the various other ailments besides the asthma and depression my previous primary care provider was treating.
My previous primary care Doc, who by the way had up and moved out of state giving 1 month notice to his current patients, had been administering medications to treat my asthma, depression, chronic pain from (at that time a 2 year long headache) and for the many fractures I endure since I have osteoporosis (as a result of being steroid dependent for 2 decades), as well as anti-anxiety medications and lastly sleeping meds since I do not sleep.
This she-doctor did not express any problems with the treatment plan or the continuation of prescribing my current medications. One thing we agreed upon was the neurologist I had been seeing for the last 1 ½ for the constant headache, really was not doing all he could, in fact he had done very little during all those months, so we decided w to fire him and stop the inept treatment he prescribed.
I felt confidence in this woman, she had an aggressive treatment plan, she rearranged some medications, stopped some others, all for reasons I had already contemplated and agreed with.
She seemed to actually listen and care.
How wrong this would turn out to be….
Each subsequent visit became shorter in duration, as if she was attempting to beat some record of how many patients she could squeeze into a work day and how little time she could spend with each. I, of course, cannot speak for the other patients they all seemed quite pleased with this service.
She began juggling different meds, adding new ones, without giving ‘informed consent’; I was forced to research these new medications on the internet, which she then scorned me for doing.
She appeared to take my knowledge of my disease, and medical treatments for said (primary) illness as a personal affront to her and her medical expertise.
Each visit developed into a passive aggressive confrontation.
As stated earlier, my asthma is the core disease; however, from this nucleus disorder and its therapy, other infirmities have risen to the surface.
From being steroid dependent for almost 20 years, my adrenal glands have ceased to function for themselves, resulting in Cushing’s syndrome, which in its own right has ailments branching off from it, along with osteoporosis which caused frequent fractures in my feet, wrists, ribs, etc…which also caused levels of discomfort to outright pain.
Then 3 years ago I acquired a headache, sudden onset (sometimes referred to as a “thunder clap” headache). These can be a big red flag of some underlying more dangerous malady. I have very rarely experienced headaches throughout my life, except hangover headaches, so this was quite disconcerting to me.
The neurologist seemed none to concerned, nor did mule man, and now this new gal doc still could not grasp the concept that this was/is one continuous headache – as in never stopping, no respite – she insisted this was an on again off again type of thing.
No real efforts have been made to date to determine the cause or a treatment for this debilitating pain. The neurologist did not think pain medications were necessary, I guess he felt my writhing in pain daily and being unable to accomplish basic functions not serious enough to deserve reprieve. Thank goodness mule man took instruction and prescribed a rather light weight pain medication, but heavy enough to be in the “controlled substance” category.
The new female doc continued to refill this and my anti-depressants and anti-anxiety meds. I felt as long as I could get the medications that aided in controlling my asthma and the debilitating ailments that stemmed from this disease I could deal with her personal dislike of me.
This was not to be, when I brought issues to her attention most normal patients would bring to the attention of their physicians she, once again received this information as an insult.
She randomly placed me on an anti-depression medication regime that was obscene and dangerous. The medication she prescribed was/is highly addictive with horrible side effects (mental and physical), and caused me to become even more agitated and angry.
I had odd symptoms popping up; sudden, drastic weight gain, feeling more hostile (than usual), amongst others, her professional response was: “you (as in me) are old; maybe you should join Jenny Craig or Weight Watchers.”
I informed her there had been no change, no increase in my diet, which I was always cautious of because of being on prednisone anyway.
The issue is the combination of medications all include weight gain as a side effect and how to work around that. It was becoming clear she had a preconceived bias against overweight persons and I was not going to get any help with that issue either.
It seemed our Doctor/Patient relationship had become very adversarial.
When I brought this to her attention on 2 separate office visits she finally got it and added another anti-depressant to the mix….both of which have the side effect of weight gain (as do all my meds), so when I came into her office concerned that I had suddenly gained 30lbs in as many months (something that had never occurred).
I went cold-turkey on the more evil of the anti-depressants (cymbalta) hoping for some relief. When I informed this she-devil doc, she decided it was time to refer me to a psychiatrist, to regulate and prescribe any further medications dealing with my mental status (or lack there of).
Now this was a treat of unexpected proportions (this said dripping with sarcasm).
She referred me to a male Psychiatrist, without even asking if I had preference between make and female.
After a year of suffering through here so called care, this imbecile fired me as her patient without informing me. So when it came time for me to call in my medication refills, she refused.
Again, I reiterate, the abrupt withdrawal from prednisone is life threatening, the withdrawal from anti-depressants and anti-anxiety medications can and are extremely uncomfortable (to put is lightly), and these were the medications she refused to refill, as I was no longer her patient….even though this is against Maryland law, because even though a Doctor fires you, they are still responsible for your medication refills until such time as you find a new physician.
SO, I went to this alleged psychiatrist who did more harm than good, every time I answered one of his questions, like “what makes you think you are depressed?” and I stated quite plainly all the symptoms I was having and for how long. I also included life occurrences that I felt influenced my depressive state and this genius’ response to all my comments were “that is not my problem”. An interesting and new tactic I had not heard of before, certainly not in the mainstream of psychological therapy.
He also did not believe in prescribing medications that were considered “controlled substances” because they were addictive. I counter this claim with the addictiveness of the anti-depressant he did freely prescribe - again the resulting answer: “that is not my problem”.
I walked away from this incident feeling truly hopeless that I will ever find someone of even the mildest competence to treat me.
I am now faced with running out of my medications in 3 weeks, and being forced to find a new physician who will continue my current regime, or at least not make anymore drastic, incapacitating, devastating, treatments and/or medications.
We here on the sand bar do not have many doctors to choose from, there are no female psychiatrists in driving distance (this is a radius of 100+ miles), so that is out of the question, as there are also no psychiatrists who not only prescribe medication but also provide therapy as well….
I am left feeling doomed and trapped. I have lost all hope of ever getting better, of ever having any portion of my life at least bearable…and now I can skip along to a new physician and take a chance this person will also try to kill me as his predecessors have.
It is like playing Russian Roulette, and if I wanted to finish myself off, I sure could find an easier and cheaper way that paying these troglodytes to kill me off piece by piece.
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