I’m sure you’ve heard the phrase “beware of false idols”. Well same could be said of those people in your “inner circle”; those in your support system.
As chronically ill people we are often too tired, depleted, and focused on obtaining the practical help and services we need to feel better and to get better to clearly discern whether those in our support system are truly supportive and whether they are helping or in fact hindering or hurting us.
We may in our quest to feel better not see (or ignore) signs that others who seem to want to help in reality have agendas that run counter to what we want for our lives, and their attitudes and biases might even throw a monkey-wrench into our goals and plans.
When that person is a doctor or other medical professional, while such people may have been helpful initially there may come a time when they cease to be or when their true colors come out and show you who they really are versus who you thought they were at a very crucial time in your life.
Be kind to yourself: Sometimes for various reasons you may not recognize when someone in your inner circle is hurting rather than helping you, not respecting your wishes and boundaries, or otherwise acting in ways that end up detracting rather than adding to your health, well-being, and happiness.
You may start to see (or feel) that something isn’t quite right but brush this off as paranoia, telling yourself not to look a gift horse in the mouth, and you might find yourself hanging onto people longer than you should because you’re afraid you may be going from the frying pan to the fire.
A false ally can violate your trust, jerk you around emotionally, and leave you confused between what your heart versus your head tells you. At best they can be ineffectual and unhelpful, but at worst, a snake-in-the-grass who has the capacity to sabotage your health and your life. If this person is a doctor or other health professional and their actions are significantly hurting your life you may want to report them to their supervisor, the head of the department or facility, and in some cases, the medical licensing board. You might also decide to report them to the Better Business Bureau.
Impaired professionals are sometimes very toxic people and not fit to practice due to their own personal biases and problems and are unwilling to voluntarily work on them. In such cases repeated attempts to work things out with such a person are unsuccessful and continuing the relationship becomes untenable and anti-therapeutic.
Each person has to use their own judgment as to what to do when they begin to see signs that interactions with these helpers are not going well and put the necessary replacement infrastructure in place, but if the situation becomes so injurious that these people are doing more harm than if you had nobody fulfilling those duties/needs you may need to cut them out of your life for your own health and sanity even before you have better supports in place, then look for those afterwards.
Here are some distinctions between true allies versus false allies
True Ally Versus False Ally
True ally: you feel empowered and supports your confidence in making your own decisions. You feel happy, relaxed, inspired, comforted, and hopeful for the future.
False ally: you feel deflated and/or defeated, powerless, intimidated, and/or irritated after speaking with them and begin to doubt your own perceptions, feelings, and decisions.
True ally: you feel secure in the fact that they’re there for you and will be for the duration.
False Ally: you have the growing feeling that their support could end with little or no warning or provocation, and it begins to feel conditional, they become increasingly unreliable, passive-aggressive (what I refer to as “weasel meanness”); they “forget” to do tasks they promised, do them very slowly, need repeated reminders, or don’t keep their word, let important tasks like writing orders fall through the cracks, and leave you in a jam.
True Ally: Communication is two-sided and the person gives you confirmation that they agree and are supportive of your game plan, is happy for you (and may even offer to help unsolicited).
False Ally: What they say to you directly doesn’t seem to add up with what others hear from them about the same interactions with you, or you find evidence that they didn’t do what they said they’d do to help or support you.
True Ally: Their written and verbal communication seems warm and open, they smile, make eye contact, and answer questions fully and directly, seem interested in what you have to say, and respect your wishes. They point out and focus on your strengths and assets and seem happy to see or hear from you.
False Ally: Their written and verbal communication is evasive, stilted, legalistic, guarded, incomplete, needs repeated clarification, and communication with them seems inordinately hard even after repeated attempts. They don’t remember important facts, and seem uninterested or irritated by your requests/questions, and/or body language seems inconsistent with what they say verbally; i.e. they like you and want to help yet roll their eyes, cut you off when you talk, or under-react to, gloss over, or minimize the importance of your pain (physical or emotional).
True Ally: Willing to go to bat for you, recommend you, stick their neck out, defends you against attacks, takes steps to keep you safe, unequivocally “on your side”.
False Ally: Seems luke-warm or lack-luster in their endorsements of you to others, unwilling to stand up for you, conveys they believe others over you when you’ve been wronged or says directly they don’t believe you, questions your credibility directly or indirectly.
True Ally: Understands and appreciates you more over time, positive interactions increase, thoughtful and seeks to make thing easier for you given your individual circumstances, makes statements that convey that they care and feel warmly about you.
False Ally: Appears tired of you, less empathetic, seems uninterested and even annoyed about your individual needs, unwilling to put much time in, seems under-concerned about your condition and does nothing to reduce your work-load and stress level, and makes insensitive or sarcastic remarks referencing you in a bad light, takes an outright oppositional stance to helping with things in ways you request, even walks out of a room while you’re still talking.
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.
The past week has been a series of gains and losses, trying to get as many things in order as possible, but having to wait for others to do their part, and aside from my pulmonary function tests, it’s going nowhere fast. I’m trying not to lose hope but it feels like just when some progress is about to be made it stalls because some key piece isn’t done (and it’s always something I can’t do myself, such as writing an order).
Updated paperwork for the Barium Swallow test My GP ordered in December is on hold, doctor’s notes faxed to Shepherd Center for my Wheelchair pressure mapping is on hold. Home healthcare is on hold until my GP can get a plan written, and somehow between the last two times we talked something changed and now he’s taken back his promise to write the order for the IV Saline to treat the Dysautonomia. Based on what? The documentation from Home Healthcare; nurse’s notes from taking about 1 blood pressure a week; only based on that, which of course isn’t enough to show anything. He has the records now from Piedmont with BP readings that were wildly dysregulated for 11 days, and I’m not miraculously cured, so I wonder, what gives?
Is he afraid that Dr. M. and his saboteurs will attack him for treating me when every symptom is not going on every minute of every day? Or does he think that Dysautonomia isn’t that big a problem and patients should just suffer through it? The constant fatigue, weakness, exercise intolerance, chronic constipation, constant thirst, pain, and getting cold 10 times a day and then hot when I add a layer of clothing, waking up feeling faint, intermittently purple feet, and unsettled GI tract beg to differ.
He says we’re at an impasse and I need to come in (which I’ll gladly do but his first long appointment isn’t until March and there’s lots to talk about so I don’t want to have it cut short and then have to come back). It’s alot to demand of my body to go to the doctor’s appointments I’m attending this week.
My GP thinks a neurologist could handle this better than he, but the truth is most of them don’t know anymore about Dysautonomia or Dystonia than he does. These are two orphan disorders that exist in a sort of no-man’s land. I seem to be cursed with these damned things. Why couldn’t I get something common and well-researched, but no, I always seem to get the health problems that nobody really gives a crap about.
At this point I would almost welcome a diagnosis of Parkinson’s Disease since everybody wants to work on that. Right now I’m laughing at the irony of it all, but give me a minute and I’ll probably be crying when it dawns on my just how screwed I am. I’m in the wrong part of the country for what’s wrong with me. The foremost experts are not at Emory.
I fear tomorrow like the plague. The very thought of seeing another neurologist, especially a general one I don’t know and has no reviews scares the hell out of me. She’s a woman and one would think women are more gentle and generally kinder than male neurologists but one can’t be too sure, as there are always exceptions, and as we have seen from Dr. H., sometimes women doctors can be very deceptive even when they seem to be on your side.
If any more harm comes to me at the hands of these doctors I don’t know if I can take it. I’ve been through enough already and it’s time that I get some support from a neurologist that values me and won’t treat me like I’m making this up or crazy, or some hypochondriac and doesn’t feel threatened because I can think for myself and be an active participant in my own healthcare. I do all this researching because nobody else will and if I don’t look out for me then who will? I have no spouse to have my back, no family that makes sure I’m safe, nobody else to go down to Emory’s Administration when I’m not treated with respect and dignity and demand that something be done. There is just me here, and a dog and a snake.
And now my GP is becoming paralyzed with inertia. My pulmonologist is being very supportive, but there are things he can’t do that my GP can and should do as the doctor who has known me for 12 years and has seen me at death’s door and knows that can happen again if too much in my body malfunctions. I am teetering on a very sharp edge between stability and instability and my body is still unpredictable. The only reason I’m somewhat stable right now is that I’m seriously hunkering down in my bed. We are just treating the symptoms with medications; none of which are disease-modifying, so there’s no telling what might happen. I don’t want to end up in the ER again and get abused or neglected like last time. They won’t understand, most likely, and I can’t take the risk.
The whole idea of Saline infusion is to be proactive and to stabilize the Autonomic Nervous System over time; not just to put out fires when someone is in dire straights like I was in November and December. This can prevent the need for emergency hospitalization if maintained. In an article written by Dr. Santa Maria, a Boca Raton, Florida doctor who regularly treats Dysautonomic patients in his clinic he says; “It is best to give saline preemptively on a regular schedule instead of on an emergency basis when a patient is already in the depths of their worst symptoms. Regular hydration can provide a sense of stabilization and normalcy for patients, allowing them to have more control over their bodies, health and ultimately—their lives.”
Dr. T., (the temporary neurologist I’d hoped would be permanent several months ago) has now agreed to see me for my Myoclonus and will refill my Keppra prescription but I had to make a follow-up appointment which isn’t until July; just a week before my consult with the out-of- state movement disorder specialist. I wrote and told her I wish it wasn’t so far away because I would like to discuss alot of these neuro issues with her.
Maybe there is something she can do to bridge the gap even if she doesn’t feel she has the skills to manage all the neuro conditions. Perhaps she can speak with the specialist on my behalf and help pave the way so that I won’t waste a trip up there and leave empty-handed.
I downloaded and took a closer look at the report of the cervical spine MRI she had ordered and interestingly it showed some foraminal narrowing at C5 – C6 and C6-C7 due to the bulging discs, and the one done at Piedmont hospital just a month later did not show that but had alot more degenerative facet findings on C2 through C6 on both sides. It just goes to show that alot of these test results are dependent on who is interpreting them, but it also makes me wonder whether degeneration can really progress that quickly in just one month (or maybe this is something other than degeneration they’re seeing and dismissing). To look at the two reports you’d think you were looking at two different patients.
The thoracic spine scan says “bulging discs noted @ L1-L2 w/compression of disc sac”.
Seems to me that with all those spinal findings and the TMJ it shouldn’t be hard to deduce that I have Dystonia. We’ll see whether this neurologist tomorrow figures it out. If she knows anything about Dystonia it should be evident to her. If not, then most likely she is not the right doctor for me.
As for the Dysautonomia it will be a miracle if she’s versed in that, as most general neurologists’ knowledge is limited to classic POTS at the very most.
I’m still looking for a silver lining in all of this but it’s getting hard to find one. I can only hope that some benevolent force greater than myself is watching over me tomorrow.