Archive for the ‘Govt Agencies Interfering In Healthcare’ Category
Tags: ACA, anger, Government, lack of care, mammograms, Obamacare
Tags: CBT, Depression treatments, Drug resistance, Fisher-Wallace Device, Harvard Pilgrim Health Insurance, tms
I was most pleasantly astounded by the results I received from the course of TMS (transcranial magnetic stimulation) I completed in June 2014. (Thanks again to Dr. Bruce Kaster in Needham MA and his wonderful nurses that administer the treatments.)
I felt better than I had felt in decades…for about 7 weeks.
Now, the depression has returned. Full force. The F5 tornado has enveloped me again. And no one gives a damn. And if I had a quarter, I have no one to call that cares – yes, that is a reference to a well-covered country song…)
I send my [dripping with sarcasm] “thanks” to the resurgence” of my debilitating depression to my insurance company (Harvard Pilgrim) and every ignorant individual that makes decisions about peoples’ lives without even doing their own research or listening to those that have been helped by treatments that insurance companies “dismiss” as “sham, ” unproven” or “invalid.”
They refuse to let people that are helped by the treatments continue with maintenance treatments recommended by those that have done the research on TMS.
Simply put – THAT IS INSANE.
So, I suffer, my husband suffers, and the insurance company spends more and more money on doctor visits and treatments they DO approve that DO NOT work.
As someone with genetic drug resistance (my body doesn’t metabolize drugs properly, which causes harmful and miserable side effects), I am literally left without options. I cannot take the medications offered for depression, anxiety, and PTSD. I know. I have tried more than 20 (twenty) of them over the past 3 decades. All kinds. Even “off-label” usage of anti-you-name-it drugs (when that was allowed by the FDA…shhh, don’t tell them, it’s STILL being done!)
I refuse to let my brain be mangled and disintegrated by ECT (electroconvulsive shock therapy) – odd how the FDA breezes past the myriad of reports of general log and short-term memory loss, “inability to recall autobiographical facts,” personality changes, loss of intelligence (measured by IQ points by those in the white coats). Why be treated just to be left live a life that is truly no longer your own? (Who am I to make this statement???? I base everything I say on personal knowledge – in this case, personally knowing some sad humans that have suffered through this archaic form of treatment and become mere shells of whom they used to be – my education, my work experience and my ongoing research into treatment alternatives for depression and PTSD.)
So, as an alternative to the TMS treatments I NEED but cannot afford since insurance deems one course of treatment “enough” for a lifetime and denies all requests for any follow-up care despite professional recommendations for such care, I ordered the famous “Fisher-Wallace Device” (also NOT covered by insurance). Basically, it is a simpleTENS unit (powered by AA batteries!) that is allegedly modulated for various wavelengths for different ailments and claims to treat everything from chronic pain to migraines. And – the FDA approves of this device!! WHAT??? And, the FDA allows them to market as “an alternative to TMS.”
I call BULLSHIT.
I have been using this thing for 3+ weeks now. My insomnia is worse. I cannot sleep at night – now, I get incredibly tired during the day and MUST sleep – where ever that may be – so I am hesitant to leave home. I average 2-3 hrs of sleep per 24 hr period. Real healthy, huh Harvard Pilgrim??
My migraines, which had abated thanks to the TMS, are back in full force – 3-4x/week – making it impossible for me to drive at times. Thanks F-W Device.
Everything from the cheap sponges that barely fit into the plastic holders that I have to wet enough so it will send the electricity “through my hair” (SPONGES? This is like a “One Flew Over the Cuckoo’s Nest” flashback), to the way the lights flash on the unit even when the sponges fall off out from under the cheap elastic headband (they are supposed to flash only when “properly placed” per the instructions). And, not even a month of use and the headband is already stretched out of shape. What the hell is this thing? Seriously. I cannot believe this is something that is allowed to be sold on the open market – with a recommendation from “any medical professional” (including massage therapists, acupuncturists, chiropractors, physical therapists, etc.) – that claims to be a cure for a long list of ailments. The word” snake oil” comes to mind. As does the word “SHAM.”
This is the perfect device for someone that will feel better if they are using something that feels as if they are being “treated” by an actual medical device – ya know, the good ol’ placebo effect.
I am not one of those people.
I am now just simply appeasing my husband and will use the thing for 45 days than demand my money back (less their insane $70 fee they charge for the return of the unit – oh- and they won’t credit your credit card back – they send you a CHECK. Wow – get with the 21st century folks!!). The same types of units can be purchased for less than $50 on the internet. This thing cost me more than 10 times that amount.
I am probably going to stop my counseling sessions as well. It has reached that point of me just sitting there and being told I need to change how I think about things. Ummm, I WAKE UP depressed. I EXIST depressed. I don’t have to think about anything.
No one had better mention meditation, yoga, Qi Gong, Tai Chi, Tong Ren – OR ANY OTHER PLACEBO-ESQUE THING I HAVE ALREADY TRIED. I have spent 35 years trying everything to feel better – to be “happy.”
I did find something that works – TMS – and, that essentially proves that there is something screwy with my brain chemicals – but I am not allowed to have it. Noooooo. I’m not rich enough. I’m too old. I don’t have the intrinsic value that other human beings have. Ask the insurance company that we pay for “coverage” – along with the government, they don’t think I am worth the cost of the treatment (but yet they give free care to people that aren’t even taxpaying citizens and consider them more of a priority and find it more ethical to offer FREE care to them instead care of their OWN people that have been and ARE paying for care).
Ouch – it really puts things in perspective. It really shows that no one really cares about anyone else. It is all just political posturing.
If I had the physical ability to go back to work in biotech/medical research, I would work my ass off to prove how cruel it is to withhold care from someone that desperately needs it.
Take away message: don’t waste your money on a Fisher-Wallace Device.
Better to save it for your body disposal expenses. (Yes, there is a cost even if you donate you body to science after “demise.”)
Tags: antidepressants, depression, drug resustance, F5 tornado, insurance, insurance company, maintenance treatments, mdr, tms
This is NOT going to be another rainbow, unicorns and bunnies post on using some natural substance, or some new form of yoga or meditation or voodoo acupuncture.
This post is about Transcranial Magnetic Stimulation (TMS). I will not bore you by droning about how it works and the successes it has had treating major depressive disorder (and migraines). You can do that here, an update here (this is a Medscape article – it may require signing in, but I’m sure that anyone reading this blog would have the sense and chutzpah to already be a free Medscape member! – or, here’s one last link from the company that made the machine used during my treatment course.
My depression is pretty much just the usual chemical state of my brain – BUT – this baseline depression has been grossly intensified by some exogenous events of late. My depression over the past year feels as if I was trapped inside of an F5 tornado.
Imagine that for just a moment. Try NOT to pay attention to all those things whipping around your head at impossibly high rates of speed – the heavy, black debris that keeps you from seeing anything but what is swirling around you – and try NOT to feel the fear, anxiety and despair about your precarious situation.
Now imagine someone trying to “snap you out if it” with platitudes, CBT, affirmations – or telling you to meditate to feel better. (I’ll bet you’d like to imagine crashing into them with that F5 tornado, huh???)
[Just a hint, people – never tell a depressed person to “snap out of it,” “grow up,” etc. It is a thoughtless, selfish act of cruelty to do so. See this link from psychcentral.com for a more complete list of things NOT to say to a depressed person.]
I have tried at least 19 different antidepressants over the past 30 years. I have tried every alternative therapy. Nothing has worked, or, I had horrid side effects to many medications, or, how my body processes them (due to several genetic mutations I have known as “MDR” – multiple drug resistance). Hey, I didn’t choose my genetic makeup. My apologies to the medical community.
So, when it became obvious that I had to do SOMETHING about how depressed I had become over the past year, I was given 2 treatment choices (covered by insurance): TMS or ECT (electroconvulsive shock therapy). Of course, I chose TMS after much research into its origin, efficacy and safety. (And, I have never met a person that went through ECT that came out of the treatment course with their personality and intelligence intact. Nope- not the treatment for me.)
Bottom line: the TMS worked!!! I was a new person in about 4 weeks. Seriously, I can’t EVER remember feeling as good and as “normal” as I did – and it was awesome!!! My sleep and appetite improved. I wanted to do things and go places. I was even able to tolerate my chronic pain a bit better as well. And, I had much fewer migraines!
What is the treatment like???
It’s 36 sessions – 30 of them consecutive (5 days a week for 5 weeks), then 3 per week for the next 2 weeks.
I sat in a reclining chair, a cross between a big dental office chair and one of those used in blood-donor labs. I had to put those squishy ear plugs in my ears since the decibel level of the treatments can be loud. White paper tape was placed on my forehead to mark the positioning of the contacts. The portion of the machine carefully placed against my head was relatively small, and had 2 contact points, one on the left side of my head, the other a bit towards the right side.. A chime sounds to let me know the magnetic pulses were about to begin. (I liked that – with my startle response I would have jumped out of my seat if the pulses just started up sans warning!) I will be honest. The treatments – 4 second “trains” of magnetic pulses, followed by a 32 second respite in-between – were quite “uncomfortable” at first. It was not a “tapping” sensation as described in the research literature. It felt more like a repetitive bee sting – or a woodpecker with a large, sharp beak pecking at my head for those 4 seconds. As the treatments progressed, I grew accustomed to the feeling. Each session lasted about 50 minutes. Watching TV or chatting with the nurse during the treatments helped me acclimate to the weird feeling. I am grateful I had such kind, engaging nurses to monitor the treatments.
The issue with this treatment is this: the effects don’t “stick” with everyone. After less than one month of being without treatments, I already feel that tornado approaching again.
Twice weekly maintenance treatments are recommended by advocates of the therapy – and I now can completely understand why now that I feel the effects wearing off – but insurance doesn’t cover them. Of course not.
Each 50-minute treatment is $350 w/o insurance coverage. There is no way we can even consider maintenance.
Well, at least I got to know what it was like to feel “normal” for about a month. And, my husband had a happy, fun wife for a brief moment in time.
I’m grateful for that time, and to my TMS doctor for helping me decide to try the treatment, and helping to get the treatment approved by the insurance company
I honestly think the insurance company would just rather see me dead. There really is no alternative for someone like me. I CANNOT take any drugs. 30 yrs (off and on) of talk therapy hasn’t done much more than give me something to do on a regular basis.
As the tornado envelops me once again, I will try to remember what “normal” felt like. I imagine I will be way too busy dodging self-hatred and anger at myself for being this “in-valid” person, like before. And – mustering the strength to “put on the mask” so others can’t see my pain.
If insurance companies would cover maintenance treatments, think of how much money they would save, not having to pay for the traditional care of someone like me…all that useless talk therapy/group therapy, etc….and all those medications that were useless or caused more problems… I think about how much better my life would be. And how much better my husband’s life would be. And it makes me even more depressed knowing that I make my husband miserable because of my health conditions.
Based on what I have read about others’ experiences with trying to get coverage for TMS maintenance treatments, the insurance companies pretty much stop short of saying they hope we will just off ourselves, as that will save them money.
If I can’t fight that tornado anymore, I hope that Harvard Pilgrim health insurance throws a party so they can celebrate how they selfishly helped one more person leave the planet. I want them to know that if they weren’t so ignorant about people with conditions like mine (just another zebra), I would be alive, and be a happy person with a happy family. But thanks to the judicial-esque decisions of their “death panels” (just an affectionate term for their grievance boards) – they will decide that I’m simply not worth it. My demise will be their fault. They left me with no other option. Oh, and thanks to the US healthcare system as well for supporting their ignorance.
Tags: Electronic medical record, medical history, ounce of prevention, Patient Protection and Affordable Care Act, PCP, Primary care physician, teaching hospitals
Remember the saying, “an ounce of prevention is worth a pound of cure.?” Well, I’ve recently discovered that an “ounce of prevention” doesn’t exist anymore. Must be inflation. You must wait until you need the “pound of cure.” Like loaves of bread for $1.00 and gas for less than $2.00/gallon, it’s a thing of the past. (I will offer a qualifying statement – perhaps that is just what the experience is here in big-city teaching hospitals, where doctors wear multiple hats and patient care is often not a priority but a minimal portion of their daily responsibilities – or that’s what I was told by a doc that works at one of these big teaching hospitals in Boston.) Even if this is true, the text below describes with much disdain my current experiences.
I’ve been absent from the blog world for a while. Why? I’ve had several bad experiences recently with the medical community. These have made me take pause to re-evaluate if all this blogging is really worth the effort I put into it. And I am mad as hell about what I’ve ben put through these past couple of months. There is no “hope” and “rainbows” and “support systems” to fix these problems – and please – don’t dare mention anything about unicorns – there are NO unicorns in medicine. Only zebras.
What I have learned?:
– Doctor-patient communication is NOT the major problem we all think it is. It is DOCTOR-DOCTOR communication. Most docs make a respectable attempts to communicate with their patients during the office visit. It’s AFTER the visit that everything goes down the tubes. For example, one would expect the specialist that a PCP sent a patient to see to at the very minimum, to follow-up with that PCP in some manner. So far, I’m 0-4 in that category. Even phone calls from my PCP’s office are ignored. Pathetic. So, I’ve spent money and time and received nothing in return. That’s $35 per visit x 4. Plus mileage, train fares, parking costs, time off from work that my husband had to take to bring me to these appointments. And we get – BUPKUS.
Hey – all of you exalted specialists in those fancy teaching hospitals – please remember that patients can’t get an appointment to see you on their own – their PCP has to refer a patient to see YOU. Don’t you think they are there for a real REASON?
– Major teaching hospitals are touted as “the place” to see specialists because they “work together” and “do research” on unique cases. Well, I’m proof that unique cases get kicked to the curb and get ignored.
– Doctors within the same practice groups don’t communicate or read what is in the charts on the patient they are seeing. I was degraded by a “new” doctor that quite obviously didn’t take the time to talk to my primary treating physician at this particular clinic, and did not even peek at my SIXTEEN years of history of my condition in their computer system. The 6 surgeries and 5 pages of every type of modality that I have tried over the past 16 years was simply ignored. Just more waste of time and money and mileage. Of course, no resolution, or offer of any solution was presented, other than – get this – “have you tried “healing touch?”
– I was told point-blank that my “disease process” was not active enough to be considered treatable. This is in spite of all kinds of abnormal test results, objective physical symptoms (and I take pictures to document them) and bringing my husband as a witness to my appointments to basically say ‘ “do something – she needs help!” So, I’ll come back when my disease process is so advanced, I’m close enough to death – perhaps then I’ll be interesting.
– Not one single doctor has taken the initiative to look at all my symptoms and noticed that they ALL fit neatly into a neat package. They are all related in some way. Yet, each is so concerned with treating just the right pinky finger or the left side of the pituitary gland, I am left to get worse and worse and worse. – Thanks to Obamacare‘s EMR mandate – every single hospital I go to has completely different medical history on me. And, there is NO POSSIBLE WAY to get this corrected. I have tried. Why? Because the brilliant author of the ACA forgot to require reciprocity among hospitals’ EMRs…and completely closed up the ability for patients to correct mistakes they find in their health records. I got this info direct from the legal department of a VERY large hospital here in Massachusetts. Please don’t argue with me on this one – argue with them. I’ve been through hell and back with three different hospitals on this one. One of them has banned me from talking directly to the doctor I saw – I have to go through “Legal” – as THEY made an (honest to goodness) Federal case out of the fact that an incompetent tech they have employed at their hospital entered all of my meds, medical history and allergies incorrectly into their computer system, and silly me, I tried to have it corrected. Bad Lori!! I just should let the hospital believe I’m on meds I’ve never been prescribed, not let them know I have some severe allergies to certain meds, and that I have some serious chronic health issues. How stupid of me. Thanks, Obama, for not letting patients be allowed to correct the mistakes that incompetent employees at hospitals make in their own medical records – and for making sure that was in your 2700 page book of rules, most of which have nothing to do with health care.
So, what the heck is going on????
In my not-so-humble opinion???
The #1 problem: Doctors are NOT interested in communicating with EACH OTHER.
– They are willing to “play nice” with their patients during office visits (most do) – but beyond that, the paternalistic God complex still exists. (male or female docs can be afflicted with this – it is a term of art referring to the attitude that they think they are immensely better than others that did not attend medical school.)
– The strong belief that women are simply “attention-seeking” as they go from specialist to specialist looking for answers is a prevalent as ever. Please, see my previous post, “Does Your Doctor Believe You?” for studies that evidence these pervasive and disgusting practices that continue to disparage patient after patient, causing more harm to each of them at every visit.
Will I continue to blog?
Is it worth it?
Does anyone care what is REALLY going on?
Your thoughts – I’d be interested to hear what others have experienced.
Tags: doctor-patient communication, EPatients
Probably 98% of the people that read my blog would consider themselves epatients…so I just had to reblog this – the comments in response to this article are worth the read – especially since some of the comments come from real live doctors!!
Thanks to Katie Stensberg for initiating this discourse on Healthworks Collective.
Here is MY response to the article AND the other responders. I’m interested to hear from others about this issue – until we significantly resolve this negative ePatient attitude that doctors have, we – patients – will continue to be at the mercy of the 12 minute doctor visit, the snapping off of all conversation by yhe dictors after 18 seconds of attempted patient input (sorry, I don’t have the reference handy for that statistic). We will continue to be “the hypochondriac in Room 4” or the “migraine in Curtain 2.” Our zebra-hoof eats will continue to go ignored, and we will be misdiagnosed, mistreated and dismissed by the paternalistic structure that somehow STILL exists here in the most developed country in the work in the 21st century.
My response to the article/comments:
“Yes. But. Most (not all, but MOST) docs loathe their patients trotting in with WebMd articles and printouts from various fora under their arms. I know this first hand. From dealing with MANY doctors. I’m no dummy, either. I have a medical and legal background. I’ve been researching health issues since I was 16, and had to sneak into the medical library at my local hospital – for it was “doctors only.”
I am blessed (yea-right) with several weird, bizarre, rare hard-to-diagnose conditions. Not my fault, folks. I didn’t choose my DNA.
But for my perseverance, I would not have the care I have now – and I STILL need more.
However, it is the sprouting up of these unprofessional, care communities where lay people dole out remedies as if it was the 18th century. (Really – telling people that certain NPs are “dangerous, when in fact they are actually quite normotensive – telling people to take drugs that are clearly contraindicated for their conditions – they would know that if they were using Scholar or PubMed…but they aren’t!!!! These people are harming themselves and others!!! (And ruing the reputations of skilled advocates and researchers such as myself!)
Its no wonder doctors have given e-patients the derrigatory label of “cyberchondriacs.” Look it up! It has its own Wiki entry!!
The ONLY WAY to get ePatients to be RESPECTED is to get these people searching on the proper sites…using peer-reviewed journals…medical texts, etc. and stop using anecdotal blather from Facebook and other “support sites.”
i recently wrote a “how to” blog post about the basics if successful researching for advocacy – I wish I could reblog it all over the web !!! I would put it on billboards if I could! Things WILL not change for patients untiil they start to bring docs cogent, respected research and evidence about their conditions that they cannot refute!!!
If you’d like my blog info, I’m more than happy to share! ”
Tags: ACA, doctor-patient communication, insurance, Obamacare
This has been a banner year for my soapbox. I’m getting more and more used to spending time on it. Now, if only people would LISTEN….
Being “blessed” with a bucketload a unusual conditions, I’m not short on subject matter. But, It’s not the actual conditions I usually blather on about – its the medical professionals, and the damn governmental interference in our health care choices and well-being.
Having strange conditions require a patient like me to familiarize themselves with the research being done on the conditions from which we suffer. This does not take a lot of time, thanks to the miraculous invention called the Interweb…errr, Internet. Since everyone 10 years and older has a phone that can access this miracle information retrieval system, there is absolutely NO EXCUSE why anyone should be uneducated about their medical condition, and NO EXCUSE why any medical professional can’t do a simple search on Medscape, PubMed or even Wikipedia to try and help a patent like me. I can find a helpful article relevant to any of my strange disorders in less than 30 seconds. Tell me then, why can’t a doctor do the same thing? Do they think they know everything? Do they not trust the information in their own peer-reviewed journals on the web? And don’t DARE say they don’t have time. The time it takes for any of my docs to disagree with me about my symptoms (really?? I’m experiencing them – they actually think telling me I’m NOT helps me?) or give me the deer-in-the-headlights stare when I start speaking their (not-so-exclusive) language takes more time than running a quickie search. You have the technology – USE IT!
My other recurrent theme is government intervention in our healthcare. The feminists of decades ago said it best, “keeps your laws off my body!” That goes for all the sneaky stuff incorporated into the ACA (Obamacare) that some people blindly embrace as “a good thing.” Yes, there are good things in the ACA, but have YOU read the 2500 or so pages contained in this scary piece of legislation? I have. You would be horrified to learn what I know. Some of the mainstream medical blogs address these issues from a doc’s point of view, which make me happy, and to which I quickly and eagerly add my comments. One particular doc for that writes for HealthworksCollective is ballsy enough to remove ALL of my comments, while others have been gracious enough to welcome the viewpoints and opinions of “an educated patient.” We are the consumers of healthcare. Most of us pay thousands a year for our health insurance. We have the right to choose our diagnostics and out treatments. In no way, shape or form should a sitting president of this country tell us what tests we can or cannot have – or what treatments are appropriate for us. How DARE the government lump the citizens of this country into neat little categories, which conveniently leave out people like me with uncommon disorders and conditions. If you don’t believe me, then you might want to look back into my previous blogs and see what damage has already been done. Just a few examples: Mammograms are limited. Back pain has been relegated to neat little boxes that limit the diagnostics and treatment for anyone suffering from back pain. The “most common” health challenges US citizens are faced with are being examined by an agency called the IOM (Institute of Medicine) – and are telling doctors the THREE best treatments for these conditions. What if you or your loved one isn’t helped by these? Oh well, too bad. You may point to the sources of the recommendations and say, “these aren’t from the government.” Oh, but they are. The ACA has tasked several quasi- and non- governmental “health” agencies (the IOM is one of them) with studying “the most common conditions” and asked for “recommendations.” It is these very recommendations that insurance companies latch onto and use as the basis for denying any but the recommended treatments, regardless of their insured’s health status. It’s happened to me. It’s happened to friends of mine. Standards of care are being ignored and these recommendations are being embraced. For example: BCBS of MA recently denied MOHs surgery for suspected basilar cell carcinoma on my friend’s face. They claimed they “never heard of it!” She had to gather research and practice guidelines to submit to them to prove it was THE standard of care for the treatment of suspected basilar cell carcinoma, especially for facial lesions. I also gave her info that my father-in-law, covered by BCBS, had had MOHs at least 5 times just this year. (Somit was total BS that BCBS had “never heard of MOHs.” It was finally approved, and yes, she DID have cancer. NO PATIENT, especially one that has to pay thousands a year for health insurance, should be forced to do her own research like this – it’s ludicrous. But, we have the ACA to thank for these new glitches in our already confusing matrix. Naysayers say we have to take the bad with the good, referring to the ACA provisions. I say NO, WE DON’T.
Patients, educate yourselves on your conditions.
Doctors, pay attention to what your patients are saying. And while you are staring at them in disbelief, try doing a bit of research of your SmartPhone – what you learn may surprise you.
And Obama, keep your laws off my body.