The above photo shows an inaccuracy that was documented and most likely placed in my electronic record. My liver specialist sent me a letter saying that my “elevated liver enzymes had again normalized”. He followed that up with a sentence stating that he would “hold off on further work-up at this time and continue monitoring periodically.”
Here is a perfect example of an inaccuracy paired with statement which could have a chilling effect on valuable work-up by other doctors, especially in related fields.
First, as you can see my Alkaline Phosphatase is still above the normal range. He should have said they’ve “improved”, from the previous blood draw, not that they’ve “normalized.”
Second, to be truthful he should have said “I would hold off on liver biopsy at this time” because that was the only form of “work-up” he could think of to do regarding my liver enzymes.
Seeing as I have an appointment coming up with a brand new Gastroenterologist in May, already a long-enough 3 months away, I don’t want her to look at that and follow his lead and cabosh whatever work-up she may be thinking to do regarding the lower GI spasticity (and long-term chronic constipation which I can’t even feel). Considering this Dysautonomia has yet to be treated since I left Piedmont hospital and all the dodging my GP has done regarding it, I want these symptoms fully looked into, and documented, since it’s not all about blood pressure, because if they aren’t this could go on forever and the root cause might never be treated.
I realize now after the ER incident (for the backstory see the post The Dark Man) just how much power words in a patient’s chart have, and the importance of checking to make sure things written are accurate and having them corrected as soon as possible when they are not.
Figuring I better clear this up sooner rather than later I called and left a message for a nurse to call me. Luckily one returned my call fairly soon after, and she was very understanding. I guess she has seen first-hand the damage irresponsible charting can do so she told me she knows this kind of thing goes on and does hurt patients’ ability to get proper care, so she would ask that these statements be changed in the electronic record, and she even told me she wished I could get an earlier appointment with the Gastroenterologist. She said at the end of our conversation that I could feel free to call her anytime and I took down her name.
I thought yesterday would be a day of rest before the Gallium Scan today but no such luck. With all the tests and orders that had backed up over the past few weeks and months invariably there were some things that were confusing and I had to make some phone calls to radiology to make sure that the Modified Barium Swallow test coming up was one and not two different ones, and that I hadn’t been double scheduled at two different locations. Emory’s code is sometimes hard to read and there are letters signifying which location things are being done, so after calling and making sure that I would be going to the right place for that and then verifying whether the physical therapy evaluation was at the same place as the physical therapy “treatment” I had to call and make sure my transportation was scheduled with a reliable service because the other day’s appointment took 6 hours for me to get home and I felt like hell afterwards. I don’t want a repeat performance of that experience. First they were late getting me to the place, and then had trouble opening the door that has the lift on it. One of the two quality assurance people was in a meeting so I spoke with the other who had one service lined up but was trying to get me set up with a better one. I never received a call back by the end of the day, so I am really hoping she gets this worked out so that I’ll get there and get back in a timely manner.
After Monday’s fiasco I came home to find a notice from the mail carrier tucked into the crack of my door. It was from Emory Healthcare. Usually in my experience a Certified Letter isn’t good news, so I thought. “Oh boy, what fresh hell is this.” It figures they’d send it on a day when I was at a medical appointment.
I looked the tracking number up on the USPS website and it says “Your item departed our USPS facility in NORTH METRO, GA 30026 on Saturday, March 5, 2016 at 9:18 pm. The item is currently in transit to the destination.”
It must have been mailed on Friday, then. It could be a response from the President of Emory Healthcare because whomever sent it didn’t know how to spell my name. Why he couldn’t just send me a regular letter like the others from Emory did is beyond me, or an email for that matter. It was supposed to be re-delivered today but there was a temporary carrier and she had not been briefed. She told me she’d ask someone to come back out here yesterday since I was going to be out at that time today, and she wrote it down but nobody ever re-delivered it, so I guess I’ll be on pins and needles until God-knows-when. I hope it’s not more of the same stonewalling and empty and insincere apologies of non-responsibility I’ve gotten from each chain of command so far. Would it be too much to ask for once for a big corporation to say, “We messed up, and we are going to correct this ASAP” and then actually do it?
If the mail carrier tries delivering it again tomorrow I will most likely not be home yet and then I’ll have to try to get it delivered a 3rd time.
One good piece of news is that someone from Shepherd Center called me back late yesterday afternoon and told me she’d call me again tomorrow to work on setting me up with one of their social workers. Apparently she dialed the wrong number a few days ago and that was why I never heard back. Her husband was picking her up and she had to leave before we’d finished our conversation, but she, like the hepatology nurse was very nice and actually got what I was saying regarding the nightmare I’ve been living through.
Getting back to the topic of what’s in your medical records; you should check this regularly just as you would check your credit report for errors or inaccuracies. You might be very surprised by what your doctors aren’t telling you!
It’s also a good idea to ask for copies of your doctor’s notes. It’s better to find out now than several months or years later when you find you can’t get any help and are wondering why.
When you find things that are inaccurate in the record ask the doctor to remove or re-word it so that it doesn’t cause more problems for you down the road. If he/she won’t do that or minimizes your concern that tells you that particular doctor isn’t genuinely looking out for your best interest and only looking out for himself. A doctor who truly cares about you should not have a problem with your request as they wouldn’t want to do anything to hurt you or hinder your getting the medical care you need.
What happens when a patient doesn’t fit the healthcare infrastructure? Sunlight filtered in through my bedroom window and for just a few moments felt a residual sense of peace and tranquility that only comes with sleep. In that state between sleeping and waking I had an epiphany that each of us comes into this world with an inner wisdom, and that healing is as much about honoring the individual and their own process as it is fixing broken parts.
Message to Doctors
I have a saying that one cannot ride two horses at one time. You cannot claim to be a healer while you harbor ill will towards that same patient in your heart. The latter invariably poisons the former, and in that environment there can be no healing. It’s a barren and desolate place full of contradictions. It’s about can’t rather than can do, about no rather than yes, it is a restrictive landscape rather than expansive, and in such a place creativity cannot survive. There is nothing more soul-sucking than that which accepts lack as the status quo.
One must be guided by the highest common denominator, not the lowest, and must be willing to reach beyond the walls of the box where they reside and embrace all that exists to be discovered outside ones own experience.
The best healers are ones who can put aside the ego for the greater good and truly put their patients’ needs first, step into their shoes, and see the world from another perspective, always understanding that at the end of the day it is the patient who lives in their own body, knows how it feels, what it likes and doesn’t, and ultimately what it needs.
To be a true healer one has to be a good listener. There are clues there if you’re willing to look.
Give the patient nothing to fight and the journey will go smoothly. There is a time for fighting and that time is when you and your patient run into brick walls in obtaining necessary services, when you need things completed stat, and when nothing seems to be working, when your patient has neither the energy nor the will to fight alone anymore. Save it for those who seek to stymie the patients’ best efforts toward a better life, for the procedural road-blocks that invariably crop up, for the budget cuts in their health insurance that tell them they cannot have a life-saving operation, a medication that keeps them out of suffering, or a piece of medical equipment that makes the difference between being completely helpless and able to do more with ease.
You may think that the above are losing battles and find it easier to tell your patient to accept that he or she can’t have that medication that keeps them out of pain or fights their cancer, or that they must live with the constant fatigue that makes life nearly intolerable, but to fight your patient’s process is the biggest losing battle of all. The biggest mistake is to have to be “right” because in so doing you lose sight of why you’re there in the first place.
You must ask yourself would you rather by “right” or do you want what you do to work?
Always remember that your role is not to dictate nor to gate-keep, but to facilitate whatever it is that the patient sitting in front of you needs, and to put their priorities before your own, to learn and value what is important to your patient, the goal being to achieve the outcome that they want.
Too many these days live by the philosophy
“If the shoe doesn’t fit then break the foot and cram it in there anyway.”
This is the wrong approach and here is why.
1) It causes trauma
2) It creates an adversarial relationship that precludes creative brainstorming and solutions
3) and it simply does not work. Your patient is an individual and must be treated as such if you want healing to happen. One can never presume to know what’s going on within another. Forcing your will upon another person may obtain short-term compliance, but compliance and effectiveness are two distinctly different things, and merely insisting that your patient fit into a cookie cutter frame causes discord between you and your patient and within him/herself.
Nobody is a better expert on the patient than the patient and the best outcomes for quality of life happen because you mutually approached a problem and fit the solution to the patient.
A Patient is Not A Diagnosis
Too often doctors and other healthcare professionals focus too much on diagnosis and leave the patient behind in the process.
Sometimes diagnoses can be identified right away, and other times that process may take years. When it does you must ask yourself “What can I do to help my patient in the meantime?” rather than thinking in terms of all the things you cannot do because you don’t yet have a diagnosis. Life goes on for that patient between consultation and diagnosis and your mission is to make living as comfortable for your patient as possible.
Now is not the time to quibble about how many clinical trials a given treatment has, nor to split hairs about whether a particular treatment is warranted. The vast majority of patients are realistic about what helps and what doesn’t and today’s patient may have read more of the literature than you have and be well-versed in what treatment options are available.
Ask them what has worked in the past and what hasn’t. If the patient brings in a list of goals or priorities for testing and/or treatment this should be respected. Identify what things you can personally do and for those you can’t, try to locate other professionals and/or services who can meet those needs. Sometimes the best thing you can do is be a strong advocate for your patient. If you convey that you believe in them and that you support them other providers will too and chances are you will obtain the desired result.
If you are unsure about certain options, don’t just dismiss them out of hand. Give your patient a full explanation for why you take the position you take, but be prepared to listen to the patient and to keep an open mind. Remember that being effective is much more valuable than being “right”.
while you may get the occasional outlandish request, most will be within reason.
Never discount or devalue a patients’ symptoms. This is important information and should be treated as such. Understand that this is an asset, not a sign that your patient is a hypochondriac. It is better to know all the symptoms they’re having and to discover that everything’s OK than to miss a life-threatening situation because you didn’t take the patient seriously, and worse, failed to act when you should have.
If you find you spend more time and energy trying to get out of doing for your patient than you are advocating for them you need to ask yourself why.
The following is an example of an instance in which a doctor is trying to look for all the reasons why not rather than using that time to try to find a way to make a given treatment accessible.
Sent: 03/05/2016 9:54 AM
Message from my GP;
“If Piedmont felt that you needed IV fluids they would have given you a PICC line before you left and would have ordered the fluids. Actually, if they felt that you needed IV fluids they would not have sent you home at all. Even if I tried to order IV fluids for you it would be denied by your insurer. If you get into another situation that you feel you require IV fluids, please go back to the hospital. PB”
Clearly this is untenable. I can’t live in the hospital and this problem is not going to just go away so the only reasonable solution is to treat it at home.
Notice in his note he did not offer to do anything or offer any alternative.
If Piedmont had given me a PICC line what would he have done? Most likely he’d have told me exactly the same thing. He would have then said he couldn’t use the PICC line, and go back to the hospital so that they can handle it. Shifting responsibility never solves anything, and when everybody is pointing towards somebody else, that leaves the patient with no help, only to become sicker, and eventually the hospital becomes a self-fulfilling prophecy. There were a few days at Piedmont that I was in really serious shape because my blood pressure was so low I was sinking into a stuporous state. Nurses kept trying to rouse me and all I wanted was to “rest” even though I knew what that meant in the larger picture. I have only been in that state one other time (and that time 12 years ago my blood pressure was dropping really low too). They did an ultrasound to see if I had urinary retention because I had laid there motionless for many hours and apparently I did but had no awareness of it because a sort of euphoria sets in.
“Yes, you’re right, Piedmont should have written the IV Saline order for once I went home, and they discharged me too early. That’s where they messed up on that end. The doctor working that day acknowledged that he knew I wasn’t technically well enough to go home (but apparently didn’t document that for obvious reasons), and told me he was going to write the order and that a nurse from Gentiva would be out on Sunday to get started. (I was discharged on a Saturday but unknown to me the doctor failed to write the order by the time I was leaving. By that time it was too late to cancel the discharge and my transportation was on its way to pick me up). It was all rushed past me and I had nobody advocating to see to it things were done right. I just did the best I could on my own. It was hard enough to get the forms filled out to have my records sent to Emory before I left.
A doctor had spoken with me midway through the hospitalization and told me that this is chronic and so he thought it best to have me on the IV Saline continuously since things began destabilizing again when he tried discontinuing to see what would happen. He realized that I would need to be followed for this and I guess he assumed Emory was capable of continuing it on an outpatient basis once I did leave the hospital just as people with other chronic conditions are treated even outside the hospital.
The reason they discharged me when they did despite my condition was that they felt I needed to see a movement disorder specialist and administration was on the attending’s back because this is supportive care and all they could really do at their facility (not that it’s not helpful, not needed, nor unwarranted).
They felt I needed to get to some place like Mayo (not realizing there was a 1 year wait) in case there might be more that could be done to treat my underlying neuro condition in addition (since the Dysautonomia is probably secondary to another neurological condition) and they weren’t a major medical center with those kinds of experts. They probably assumed that keeping me there would hold up that process. Their attending physicians changed almost daily, so it wasn’t all that organized from one shift to another.
Emory is capable of putting in a central line if necessary to carry this out. If there is any other mode of IV access that home health would be willing to use I’m OK with that. The nurses specified a central line since they couldn’t come out everyday and they told me that a port was the least risky for infection. It seems to me if they came out 3 times a week they’d be checking it often enough to prevent complications whether it’s in the arm or other type device, and if it turns out I need it for other things later on it will save having to do it later. Gentiva is also supposed to have a nurse on call after hours in case of emergency.
I’m working on getting longer-term services through Medicaid that also provide nursing. That’s the service that will take 6 weeks to obtain and through which I’d also obtain the personal assistant. That agency might be able to authorize nurses coming out more times a week.
As for whether insurance will cover the treatment; that’s the kind of thing a GP is supposed to help advocate for on behalf of the patient and if all else fails see whether there are other resources available to cover it with. We already know it helps improve autonomic processes from how it helped at Piedmont. One of my doctors needs to do this.
I just seem to be in the unlucky population of patients who have orphan diseases that are challenging to treat. It’s not like I had a choice. It’s just how my body was made. If it’s frustrating for doctors it’s 10-fold frustrating for me because it’s my body that goes through it. It doesn’t always wrap up in a neat little package, I wish it were that simple, but that doesn’t mean you stop treating, doubt the patient’s credibility, and stop doing anything you can, or that you take that frustration out on the patient.
Having to prove everything 20 times over beyond a shadow of a doubt and being made into a political football does not inspire me to trust nor does it make me feel supported while I’m facing significant health problems. What I need right now is gentleness, kindness, and real empathy and understanding.
Piedmont could have done some things better but I’m here now and it is especially crucial that my regular treating doctors work with me and not against me. I have enough hurdles as it is given the complexity of the disease itself.
I don’t know what the future will bring in terms of my prognosis and things may get worse. All the more reason to line up somebody amenable we can work with in case I should need hospitalization again in the future. Losing control of my body processes is unsettling enough without also having to worry whether my doctors can handle it emotionally and whether they can and will do what needs to be done for me in an expeditious manner.”
If you’ve ever read some descriptions of hell you will soon recognize the recurrent theme, i.e. a thirst that can never be quenched, hunger that can never be satisfied no matter how much one eats; a sense of eternal torment.
There is no mistaking now that Dr. Slow-as-Molasses is no longer acting in my best interest, as he has plastered his unequivocal lack of support on the Patient Portal. I read it early this morning having had the rude awakening of more of the same dysautonomic symptoms, and then logging on and reading this BS from him sure didn’t help matters.
The pen is mightier than the sword, and in a blithe little paragraph this doctor took it upon himself to leave me in a state of eternal thirst, fatigue, queasiness, and generalized agony when he could easily have made a different decision. Well, two can play that game, and I’ll bet I have a much better case to make. Yup, it takes a big man to take out your passive-aggressiveness on a disabled woman of 5 ft. 2. What a weasel.
I’m sure the Emory peanut gallery is pleased that he decided to become a company man and there is much slapping on the back and high-fiving going on behind the scenes, but his “reasons” for this refusal are no leg to stand on.
In his written message he stated that;
“As promised, I did speak with Daria (from Gentiva) at length. Unfortunately, we agree that based on your current status, there is not a HHN service that is appropriate for you at this time since you do not require any skilled nursing services based on anything they observed at any of their visits, or anything that came up during you(sic) recent visit with me.
She does recommend an aide/CNA that the social worker was working on.
I would also stongly recommend that you consider an assisted living or nursing facility where you could have more assistance, if a family member cannot come to stay with you.”
Apparently this was posted on March 3rd at 2:45 PM. I didn’t get an email notification until much later. By the way, I spoke with Daria and his account of the conversation was not entirely accurate. She actually wanted me to be recertified but could not do anything without him to write the plan and since he failed to give her one, it didn’t happen. Unlike Dr. Do-Little, she wants to see me receive care in my home and not further traumatized by being ripped away and whisked off to some facility where I could be further victimized. She’ll gladly work through another doctor now. I have a few choice words that would make a sailor blush regarding his “strong recommendation”. Hmm. How convenient for him! Great way to get out of doing his job. Clearly he could care less about me, allowing me to suffer since I got out of Piedmont in late November, untreated for this condition.
Well since he controlled the entire conversation when I went to see him with his silly visual aid and telling me how much he didn’t support me, and take my symptoms seriously, striking through a good portion of the list of my priorities, then of course he “couldn’t” find that I need skilled nursing services.
He was trying so damn hard not to find it (the criterion for skilled nursing and impetus for treating the Dysautonomia). If he’d put as much effort into finding it as he has into dodging it we might actually have made some headway in treatment and how I’m feeling by now! As a long-time patient advocate I can tell when a provider is soft-peddling the criteria for a service so that he/she won’t have to authorize it. They know just how to tank it when they want off the hook.
In an act of sabotage, he used home healthcare’s very minimal BP readings (from over a month ago) as an excuse to say that since the low BPs for the most part didn’t show up in those taken about 2 times a week by home health (and in only one position) there was no evidence (as though the Piedmont records expired). And what’s shittier still, he’d admitted when I saw him in the office the other day that these two sets of measures were not comparable.
Other than a research setting hospitalization records are the most rigorous form of documentation to evaluate blood pressure, and what’s more, I had also sent him the photos of my purplish feet (see below). It was the same day that he wrote me back saying “OK, I’ll do it” and signed his initials below, then about 10 days later did a complete reversal of that promise.
For those who aren’t familiar with this phenomenon, this is blood pooling in the lower extremities. This is also referred to as acrocyanosis.
Other symptoms of Dysautonomia besides, low blood pressure, blood pooling, syncope/near-syncope, include but may not be limited to;
* Joint pain
* Muscle aches
* Myofascial pain (of connective tissue)
* Neuropathic pain (nerve pain)
* Hyperreflexia (abnormally increased reflexes)
* Generalized weakness
* Restless leg syndrome
* Seizure-like activity
* Central sleep Apnea
* Hyper or Hypoventilation
* Light sensitivity
* Sound sensitivity
* Easily overstimulated
* Exercise intolerance
* Intolerance to heat and/or cold
* Whole body feeling cold
* Cold hands, feet, and/or nose
* Need for 12-15 hours of sleep
* Hypovolemia (low blood volume)
* Narrowing of upright pulse pressure
* High BP
* Drop in BP while standing
* Cognitive impairment (brain fog word finding/recall)
* Chest discomfort and/or chest pain
* Disordered Sweating
* Physiologic Anxiety (Adrenergic-based)
* Loss of Apetite
* Weight loss or weight gain
* Feeling full sooner than normal
* Delayed Gastric Emptying (Gastroparesis)
* Low blood pressure after meals
* Excessive Urination
* Urinary urgency
* Urinary retention
* Irregular menstrual periods
* Loss of sex drive
* Blurred vision
* Tunnel vision
* Pupillary dysfunction
I can see where doctors who don’t bother to read the literature in any depth might make the mistake of thinking their patients who present with alot of these symptoms are merely over-concerned or hypochondriacal, but make no mistake about it, these are all legitimate parts of a number of Dysautonomic syndromes.
Some people have no symptoms that they’re aware of and still have Dysautonomia, but when somebody has a large number of these symptoms and they are disabling why make them suffer needlessly when there are things that doctors can do to help their patients have better quality of life and not to feel like they wish they were dead?
In an article on syncope written at the Cleveland Clinic it states that at 1 year there was between 18-33% chance of mortality in those with syncope of cardiac etiology, 0-12% for non-cardiac syncope, and 6% chance of death with syncope of an idiopathic nature.
While these statistics are not high, I for one would not like to be in that unlucky group that did die in a freak accident upon fainting or near-fainting.
Dysautonomia can be either primary or secondary to another underlying condition such as Multiple System Atrophy (or MSA) .
In addition to POTS, there are a number of other types of Dysautonomia listed on Dysautonomia International‘s website.
Monday is the first of the tests that were ordered by Dr. V; the first part of the Gallium Scan where they inject the radioactive isotope. Then on Wednesday they’ll do the scan itself. This may tell me whether this is being caused by the progression of my Sarcoidosis. It really is about time they got on the stick with these tests to get to the bottom of this disease.
Right now I’m having this heart pressure I get sometimes that seems to press up into my neck and head. I’m becoming overheated and sweating around the base of my skull. I have a kind of strange sweating pattern. Part of me can be sweating while another part is not or even cold. I wish it weren’t the weekend so I’d hear as to when my pulmonologist is going to get things moving again. The nurse got back to me but had to get an emergency call and it was late in the day, so she was not able to give all my information to him and get confirmation yet. This has to be treated, no ifs, ands, or buts. It seems to be getting worse again into one of its acute clusters. That’s when things start to get hairy.
I’m also going to need that referral to Vanderbilt initiated as soon as possible. While we have plenty of proof that it’s some type of Dysautonomia, Vanderbilt can get more specific with their testing and clinical assessment.
I sit here trying my best to brush out the mats from my hair that have been developing because I have to sleep more than I used to and the fatigue and muscle pain some days are just too much to brush it. Such is life for those with chronic disease and no caregiver at home to help with these types of things.
I get through each day on a wing and a prayer, hoping every day that something positive I’m working towards will come to fruition. If I could write all my own orders and prescriptions I would, as it seems now that getting everything I need depends on some MD’s name on some form or another and my doctor has decided somewhere along the way to become one more obstruction along this already bumpy road I’m traveling on. He finally wrote me back on the patient portal today to say that he couldn’t go along with the continuous saline infusion, and that he’d done all he could with home healthcare.
I can barely bathe myself although the shower bench helps somewhat. I still can’t reach everything on my body, and that’s not me, and its not laziness either. I’m very meticulous about getting clean and I don’t like it being half-assed and I like to shower everyday, but without help I simply don’t have the stamina, and because of my stiffness I find it hard (and on some days impossible) to reach my toes to wash them. I can’t reach my back even with the long handled sponge thing I got through a local non-profit organization because my arms just won’t bend in the right ways to reach where I need to reach.
Daria, the Care Coordinator told me last week on the phone that they would be glad to pick up my case again and are just waiting for my doctor to write the order and submit a plan, so the obstruction isn’t coming from them, nor from my insurance. It’s coming from my GP. Why does it not bother him that I am home alone without proper help so that I can do the activities of daily living? After 12 years you’d think he’d care that I’m here struggling and using up precious energy reserves I don’t have just to do the simplest things.
Nothing has really improved in my functionality, so why is that call to discontinue services? If anything it calls for increased services, as this disease isn’t going away in 6-8 weeks. I don’t want to deal with it either but I don’t have that luxury of just ignoring the whole thing. I still cannot do my own grocery shopping and the guy who was helping with that is getting more and more lax, getting 1 item when I ask for 3 of something, 2% milk when I asked for whole milk, fully cooked low-sodium bacon when I asked for the applewood smoked bacon that he got the last time, and running out of things and being SOL because I don’t have things needed to complete a recipe.
I find myself time and time again having to prostrate myself just to have the basic necessities and get through life. I have no family to speak of to take care of these duties, and in order for the social worker with the home health agency to help me apply for longer-term help my doctor needs to get me recertified with them. I really need a personal assistant and in order to get the Independent Care Waiver through Medicaid so I can get one he needs to send his doctor’s notes to Shepherd Spinal Center so I can get the pressure mapping evaluation for a wheelchair that will support my whole body properly. The paperwork for the Independent Care waiver asks for the wheelchair specs (in addition to other help I need) and it has to be specific, but Shepherd can’t schedule me until he sends the doctor’s notes.
In addition, the Modified Barium Swallow Test he ordered in December must be updated because the December prescription is too old. I have asked several times yet he has not done that. I told him that it’s becoming too much to have to give these constant reminders and that I need him to take some initiative and go to bat for me as my GP.
What the hell have I done to deserve this? I’m trying not to have any more medical neglect and make things come out better for the second half of my life but nothing I say seems to make a difference. No amount of self-advocacy does any good anymore. It’s bad enough not to have any control over the physical processes in my body, but then to have no control over everything else is just too demeaning for words.
It seems that these doctors see me as a non-entity and my voice is of no consequence in anything that happens in my care. They just do whatever the hell they want whether I like it or not and I’m not supposed to have any say in the matter. Well, fuck that shit! I’m a grown-ass woman and it’s my decision what is done with my body and not! They are only consultants (I like that term better than doctor and I think Australia and the UK has that about right). Who died and made them king!??? These doctors are supposed to be working for me, not the other way around. I’m getting really fed up!
I asked my GP what exactly happened that one minute he was ready to treat my Dysautonomia with the continuous Saline infusion and now he’s not and I asked if anyone at Emory had scared him out of it and if so I wanted to know whom.
If I find out Dr. M. and/or his buddies have anything to do with this I will be a ball of fire and will not rest until justice is done. I don’t need this right now as I’m trying to get to the bottom of my underlying condition and get help for it.
Just like I said to Dr. H., if a patient is suffering then treat it! It’s as simple as that. There is no excuse to sit there and allow someone to suffer when there is something that can be done to alleviate it and it’s relatively safe.
I found that this mode of treatment works for me so I should have access to it if that’s what I choose. I’m well aware that it won’t cure it, but if it will give me more energy, help my bowels move more regularly, improve my appetite and reduce GI problems, make me less thirsty all the time, stabilize my blood pressure, and make me feel faint less often then it’s worth it to me! He has given me not one good reason why he should not.
The port can be put in at Emory’s outpatient center, and home healthcare can do the infusions with their nurses, so frankly what’s the problem??? It’s not like I’m asking for a breast augmentation, this is something medically necessary so I can have some quality of life and it may even prevent an emergency down the road!
He has not come up with a better idea and unless and until he is willing to go out of his way to do the amount of reading and researching I do each day to help come up with something better then as far as I’m concerned he just needs to defer to me.
Besides, I always see the trajectory of things. It’s one of those special perceptual talents I have. At this rate I will probably end up back in the hospital. That is not the preferred way to do this. This method is supposed to be proactive, but left untreated, persistent dysautonomia can be dangerous and cause all sorts of complications. With the blood pressure readings they documented at Piedmont it would be medically irresponsible not to treat it at this point. Maybe in the past it wouldn’t have been as crucial, but now that we have that information from my hospitalization records (and I assume it’s been entered into the electronic records system at Emory) it is really indisputable.
If Dr. V’s hypothesis is right about this whole thing being caused by my Sarcoidosis then I will most likely be considering other treatments that are given by IV such as antibiotics or IVIG, and having that central line will take alot of the demand off my stomach and GI tract in addition to being useful for the Saline treatment. I’m taking about enough pills by mouth right now. If I need to switch from Tizanidine to Baclofen for my spasticity that is the quickest delivery method there is to have it work immediately. They can draw blood from it and do a number of things that will make life easier for me.
If it’s not my Sarcoidosis that is the underlying condition differentials could be one of several Atypical Parkinsonian Disorders such as Multiple System Atrophy (MSA) or Corticobasal Disease (CBD). It was uncanny how many of the symptoms I have that fit the description of either. It was also interesting that the neurologist who gave the lecture in the Youtube video said that they have some symptoms in common with ALS. If I have one of those then it makes perfect sense as to why one might think it was ALS initially. Apparently these other two are even less publicized so they can often go longer than ALS to be detected and diagnosed. These can cause Dystonia, Dysautonomia, and Myoclonus.
Today I was in such agony I could hardly stand being conscious. It was one of those days one would have to die to feel better (and I’m sure those of you reading who have chronic illnesses know how that is).
My face and body were hurting really badly (that same “feel the burn” feeling I had back in August along with inflammation), I had alot of nasal congestion, the roof of my mouth ached, I was nauseated and had colon spasticity. I had to take Tizanidine and my Tramadol and Ibuprofen and sleep it off before it finally let up. I also had more fasciculations in my big toe on the right foot that lasted quite awhile after my nap.
It’s Wednesday and still no call from Radiology to schedule the Gallium Scan. I called and left a message for the nurse to call me and let me know what’s going on and when I can get this done. I hope Dr. V. didn’t go on maternity leave and forget about it.
Yesterday I got stuck lying on my back and couldn’t turn myself for at least 10 minutes and nearly had another fall when I finally managed to roll my bottom half off the side of my bed. This happened alot in the Summer and Fall and I thought it had stopped but looks like it was just taking a temporary break.
I’ve also noticed my jaw dislocating, and cracking in my jaw and in my cervical spine over the past week or so. That needs to be looked into. I asked him to order an MRI of the jaw and sent him exact specs for how that order should be written to get the best view of it. We’ll see what he does with that. I also asked him to get a copy of the first imaging that was done 10-12 years ago by the oral surgeon at Emory which showed I had TMJ so that we can compare and see if there has been further degeneration.
If I take the time and energy to go in to see him and come up empty-handed I am going to be pissed! I expect these orders to be done, and I think he should also have reached out to the movement disorder specialist I’m seeing in July to help facilitate and give him some history and try to make this as easy for me as he can so that the experience will be fruitful and so I’ll be treated with respect.
If my GP conveys to the movement disorder specialist that he’s behind me 100% then it is likely that I’ll be treated well and that the specialist himself will put 100% into diagnosing and truly helping me so that I can come home and not have to continue to prove myself ad nauseum as I have had to up until now. That is probably the most tiring thing I deal with on a day-to-day basis and its high time that my condition be given the credence it deserves. I did not ask to be sick nor to be poor and I believe everyone should have access to the care they need for their conditions no matter what their station in life. It’s just a matter of dignity and humanity. At the very least these doctors should take care of these medical problems expeditiously and give me the best quality of life possible under the circumstances of what my limitations are.
Tomorrow I am seeing my liver specialist. My liver enzymes have been elevated chronically now for about 8 or 9 years. I think at this point they need to do more than monitor it. A test result doesn’t keep cropping up like that for that long for no reason. It’s there to tell us something of significance. If it’s not my Hepatitis B reactivated then they need to find out what else it is. Maybe my liver can elucidate some useful clues in solving the other stuff.
I’ve pretty much run out of patience with all the diddling around and delay tactics. I’m quite sure if I had money and top of the line insurance I’d have a diagnosis by now and would have been on treatment for years by now, and maybe I wouldn’t be near as disabled as I am currently. There’s alot of rationing the doctors never tell you goes on which determines how aggressively (or not) they treat a condition.
The poor die silently of medical neglect every day and for the most part it never makes the news. I do not want to become one of those statistics.