Archive for the ‘Technology’ Category

Made by me on someecards.com

Made by me on someecards.com

I recently posted that received a course of TMS (transcranial magnetic stimulation) to knock back a major depressive episode.

However, I failed to mention that I experienced several other changes in symptoms  – symptoms other than the “F5 tornado.”

There HAS to be a connection between whatever the TMS does and the symptoms from which I experienced relief…which leads me to believe that the doctors are missing a serious connection between all my weird symptoms that make me the zebra I am.

So, what changed during treatment?

1.  Much fewer migraines….

2.  My odd and unexplained breast regrowth ceased – along with the pain that went along with the growth. (I had a reduction Nov 2013 due to the major and PAINFUL increase in size of my breasts from a 34DDD to a 34I in 4 yrs). My reduction was “supposed” to bring me to a 34C. HA. I quickly (and PAINFULLY) grew from that alleged size to a 34DDD in 4 months post-reduction. NOTE: all hormonal and endocrine levels always test “normal” – even though any bachelor’s level bio student knows endocrine levels can change on a moment-to-moment basis, the doctors that order these tests seem to stand firm that everything is “normal. Yeah…right. As the Ghostbusters always said – “we are ready to believe you.” NOT.

3. An increase in dreams. Some good – some bad – but all were vivid and memorable.

4. Longer periods of deep and restful sleep (I wear 2 “life trackers” that monitor sleep because of my weird sleep history (See my prior post on DSPS  – delayed sleep phase disorder).

5. A marked increase in sensitivity to medications: Clonidine (a BP medication), and MSIR (morphine sulfate immediate-release).I had to completely STOP the Clonidine as the effects that it caused during the TMS were debilitating – I literally would be unable to wake-up for 14+ hours if I took even half the smallest dose.) I take the MSIR for chronic back and leg pain I have had for 16+ years  – and the 6 surgeries I have had have failed to completely resolve the pain. During the TMS sessions, I required a lower dose of the MSIR to get pain relief, and, for the first time, I experienced side effects (a bit of nausea and extreme sleepiness) from my usual dose and had to reduce it by half.

6.  I had far less incidents of low blood pressure (associated with my Autonomic System Disorder – I have many posts and links to others’ posts about this condition on my blog.

What has happened with these symptoms since I ceased treatment one month ago?

1.  I am once again being awakened by migraines – with nausea, photophobia and positional increase in pain. I am getting 2-3 migraines per week.

2. My breasts are sore, lumpy and swollen. Gads, I hope they are not growing again. I just bought new bras because I though the growth had ceased.)

3. I am still dreaming, but less frequently. And they “loop” – much like they did before the TMS.

4. Problems getting to sleep AND staying asleep. (And, I cannot take any sleep aids due to the side effects I have from any meds used to sleep since this odd Autonomic Disorder I have kicked in back in 2012.

5. I have had to increase my MSIR dose back to pre-TMS Levels. I seem to have more pain in my back as well.

6. My BP and heart rate are becoming much more labile (variable) again. I have had to take additional beta-blockers recently to address the increase heart rate and chest pain.

Sooo….what is the connection? So far, none of my doctors have tried to solve this mystery. Why not?  A simple Google search can provide clues….

Which is what I did. It didn’t take long at all. I am an experienced researcher with decades of research experience so I know how to word my searches to get the best results. I am sure that diagnostic research was covered at some point in medical school.

What did I find out?  All of these things are connected in some way to DOPAMINE levels, and are things that are effected by what is known as the HPA (Hypothalamic-Pituitary-Adrenal) Axis. (Check out the link for hundreds of images from sources that could provide clues to my doctors….note the 3 words I used for the search…real rough, huh?)

HELLO? Can someone PLEASE tell me why a single medical professional cannot take this information and try to help me?  Doesn’t anyone care about me and the quality of my life???

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Graphic comes from THIS article...what a coincidence!

I had my genome sequenced primarily for health reasons in late 2013.
Not only did I get some great information that confirmed what I already knew and informed me of my relative risks for other health conditions, based on my own genetic ancestry, I learned that I am 44% Ashkenazi, an important category of people who are prone to medical oddities and have been studied in-depth for this reason. (This proves that you can’t believe everything Mom tells you sometimes..I was supposedly Italian and Scottish/English. Whoops.)

I chose to have my testing done by 23andme, primarily because of their reputation, their ongoing independent research into many genetic issues, and the fact that they will continue to update your results for ten (10) years based upon any research. There were many choices available and many levels of cost. It is very disheartening to have had the FDA suspend the medical genetic testing portion of their operation for what I personally believe to be political and capitalistic – they are not getting any money from the testing, nor is any income being generated for the FDA’s strongest lobbying groups. But, I do not wish to discuss the politics of the FDA here. Unaligned DNA sequences

Using my genetic raw data, I used several online services to re-analyze the results I had received from 23andme. Many of these databases address or define particular issues that 23andme chooses not to tell their customers. Perhaps this is due to space limitations, or the mere fact they don’t want to overwhelm lay persons with information that may not make much sense to them. I found that Promethease was the most comprehensive analysis tool available. (If you choose NOT to download the analysis tool, the reports (yes plural) will cost you $5. I downloaded the program so I did not have to pay for my information).

If you are a regular reader of my blog, you know that I have a lot of uncommon conditions, and that I have been misdiagnosed and/or dismissed by MANy physicians over the past 30 years. I have had all sorts of strange and “rarely reported” side effects to many medications. Now, thanks to 23andme and Promethease, and my subsequent research (jump-started by the links in the Promethease report), I now know WHY.

So, WHY?

My results show a multitude of genetic mutations in one of the genes known as the “multi-drug resistance”  (MDR) genes –  ABCB1 (“a gene that is the member of the superfamily of ATP-binding cassette (ABC) transporters. ABC proteins transport various molecules across extra- and intra-cellular membranes. ABC genes are divided into seven distinct subfamilies (ABC1, MDR/TAP, MRP, ALD, OABP, GCN20, White). This protein is a member of the MDR/TAP subfamily. Members of the MDR/TAP subfamily are involved in multi-drug resistance. The protein encoded by this gene is an ATP-dependent drug efflux pump for xenobiotic compounds with broad substrate specificity. It is responsible for decreased drug accumulation in multidrug-resistant cells and often mediates the development of resistance to anticancer drugs. This protein also functions as a transporter in the blood-brain barrier.”   http://ghr.nlm.nih.gov/gene/ABCB1.)

This information coincides with the strange side effects and non-response issues I have had for decades with certain drugs. It is welcome confirmation that something is DEFINITELY different about me…it is vindication….documentary evidence…and proof of my own hypothesis (bolstered by the occasional physician) that “something wasn’t right with me” since I was 12 yrs old.  Even better and more important – it is based on HARD science – using my own genome!!! Not just supposition based on some papers or articles I heard about on Dr. Oz or WebMD, or anecdotal ramblings I try to get my doctors to “hear.”

I recently had a serious adverse drug event that could have been prevented had I known about my ABCB1 mutations before I started the medication. When I informed my doctor, the response I received was a copy of a 3 yr old opinion paper written by a “for doctors-only” research service dismissing most genetic testing by commercial entities as inaccurate and unreliable – despite the fact that these companies use the EXACT SAME proprietary, science-industry-produced tools and assays as any hospital, medical lab or university researcher would use. The article referred to genetic testing initiated by patients as part of the “personalized medicine” fad and gave strong advice to their target audience NOT to rely on any of the results. (Unfortunately, I do not have access to the service that publishes the article, therefore I cannot give you a link to it. However, if you contact me, I can provide you with a PDF.)

While I agree that testing in the PAST was if-fy, based on which lab was utilized, I vehemently disagree with this article’s continued dissemination to physicians based simply on the harm that it could cause to patients.

MDR mutations have HUGE implications in drug metabolism. If drugs that do not cross tissue barriers due to the lack of proteins in a person’s body that are supposed to carry drugs across membranes which they need to cross to work, they can accumulate in organs and body tissues and cause problems. I’ve had that happen.

Since I received the 2011 article from my doctor putting-down of “personalized testing platforms” such as 23andme, I have done some research and found MANY online resources that re-analyze the results of the 23andme testing (or DNA raw data from anywhere) are now available on the internet. I imagine this was in response to the persistent questioning of results by healthcare professionals.

Also, it should be noted that as inferred in the anti- personalized medicine article, 23andme doesn’t use their own geneotyping materials, but in fact uses commercially available arrays – just like the “real doctors” use! They state this clearly in their response to the FDA’s accusations about a month ago. I count at no less, 25 commercially available microarray cards that are manufactured for the purpose of determine multi-drug resistance available (just an example from ONE company), then it must be a lot more standardized than the author of the article is aware.

So, why did I mention DOGS in the title of his post?

Check out the link from this pic!

Check out the link for this pic! You can’t escape the uses of DNA!!

Turns out that MDR testing for purebreds is a common thing, as is evidenced by the multitude of tests available  – this is one company offers MANY. Just Google “canine ABCB1 testing” for a plethora of research articles on canine testing, and companies that specialize in such testing. (Perhaps I should go see a vet….)

I now fear seeing any more specialists here in Boston, where microspecialites seem to be norm at these training hospitals. I fear seeing a “personalized medicine” hater, or someone who despises people like me – ePatients that have the knowledge and ability to research issues on our own, similar to a certain specialist I saw last year that was agitated that I had possession of my test reports and medical information. Gee, if he know I had my genome sequenced and had all this information about my DNA – he would blow a gasket!!

So, why don’t I see a geneticist, you may be wondering…My insurance company will not pay for me to see a general geneticist – a cancer geneticist – yes – in fact, “strongly recommended” for people with my breast cancer family history; or, a cardiac geneticist – sure, no problem! The insurance company’s policy conveys that it doesn’t think that any other genetic abnormalities are important enough to explore to improve or save their patients’ lives, or even save them money in finding a treatment for their disorders.

A multitude of papers address this topic (not “personalized medicine” – but ABCB1 and other P-gp mutations) – in detail – be it for cancer drugs or antidepressants. Most often, it is applied in cancer cases, as certain cancers show affinity/resistance for one drug or another, based on P-gp status.

The man who wrote the most cited paper regarding the specific SNPs responsible for genetic-based responsiveness to several different antidepressants is Manfred Ur, MD at the Max Planck Institute of Psychiatry. He has been researching and documenting these polymorphisms in well-respected peer-reviewed journals since 2000. His webpage is a great place to start your research.

Here are a few of the most informative research papers I have found on the topic of ABCB1 mutations. Don’t forget to check out the references at the end of the article – they are a treasure-trove of additional information, and may lead you to exactly what you are looking for, if the referencing paper didn’t hit home for you.

ABCB1 – Genetics Home Reference

Great Tutorials about Pharamcogenomics

Polymorphisms in the Drug Transporter Gene Predicts Antidepressant Response

The ABCB1 Gene and Antidepressant Response

Ethnicity-related Polymorphisms and the ABCB1 Gene

Pharmacogenetics of Antidepressant Response – An Update

As my readers know, I am quite angry with what the health care system has handed me of late.

I won’t even go into the ludicrous bureaucracy that my health insurance company (local to MA…named after a large university here in Boston and the folks that sailed over here on the Mayflower…) has added to the mix.

Nor will I travel down the path of how insanely horrendous the service is at the mail-order pharmacy is (“at the corner of happy and healthy” – HA!) I am forced to use by said insurance company – so bad that I have to go through the main office of the company in Florida from now on to get service due to the numerous screw-up they have made…and how miserable they have made the lives of the wonderful staff at my PCP‘s office.

But, a ray of sunshine appeared in my inbox today – this posting from a great doctor-centric blog called Mind The Gap

The topic of this particular blog is about how doctors lose opportunities to connect with their patients – or, how doctor-patient communication fails. This blog doesn’t mince words – it calls things as they are – point out the flaws in the system – and doesn’t blame patients with their lists of questions as so many other physician-oriented blogs are apt to do.

It also reminded me of the other great posts that Mid the Gap also posts regularly. Any ePatient, advocate or activist might want to consider following this blog. The authors are well-credentialed, and echo sentiments I often express.

[Since I don’t have those two elusive initials after my name, most seem to turn a deaf ear to the 16 years of my knowledge and experience I have been blogging about for years – and about how I have been somewhat successful in getting appropriate treatment for some not-so-common-illnesses, and perhaps most important, feel believed (I am a female, after all).]

My response to the Mid the Gap posting today:

“Doctors are “missing the boat” b/c they don’t communicate with each other about their patients that they refer to each other. They refuse to share reports. The patients are left in limbo – with no info, and no way to get the info without PAYING for the report. Why can’t docs communicate about their common patients? Perhaps then they could actually help SOLVE their patients’ issues instead of keeping their patients sick, depressed and on disability. I am a “victim” of the micro-specialty craze sweeping the medical fields. I have seen more specialists in one year than I hae seen in the prior 50 yrs of my life. And have any of them communicated with each other to say, see if ANY of my symptoms are linked or related (hmmm, based on what I know as a former biotech/science person myself, I would say that autoimmune and autonomic problems are likely linked…as could be the pituitary tumor and sudden painful breast growth and horrid depression…and my Raynaud’s…and my migraines…) But none of these micro-specialists will talk to each other. Most of them refuse to send reports to my PCP – and she is the one that REFERRED ME TO THEM!!!
Talk about missed opportunities – there ya go – that is where the missed opportunites to help patients are originating. How does that oath start again…, oh yeah, “First, do no harm…”

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I wish I had the time and space to tell you how much harm these specialists have caused for me, my family and my quality of life because of their arrogance.

Thank you for pointing out that the problems with healthcare today are starting with the doctors attitudes and not with the patients – as many doctor-centric blogs do. Keep up the great work!!!!”

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?

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– 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.

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– 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.

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– 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.

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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.

This will be a short blog entry.

Promise.

I just discovered two MAJOR hospitals – one of which I’m having an operation at in less than a month, has incredibly incorrect medical information about me in their computer system. How did I learn this? Open Notes. Now you know which major hospital i’m referring to. Incorrect history, medications listed I’ve never taken, incomplete medication allergy lists…
I m scared.
It’s not for lack of trying.
Everyone knows about my multi-page info printouts that contain all this info that I bring to visits. The same ones numerous docs have told me they think are “great” tell me I’m a “god patient” and “wish more patients would take such an active role in knowing their health history, medications and diagnoses.”
But what good does it do if this info never makes it into the EMRs?

The second hospital is in Worcester. A major teaching hospital – I gave my printout to the person takes with entering this info (according to the doctor) and not only couldn’t she read Englush, she dint know what”PRN” meant, nor what basic medications were. In the nail today, I received a summary if the “medical record” this huge and well-regarded center has on file about me.
I was sickened and infuriated. How many times do these people have to be handed computer-printed, legible information – and how difficult is it to scan/transfer this info into their systems? My PCPs network seems to have this down to a science (www.OneMedical.com, for those interested in a competent organization).

This so-called “Personal Medical Record” listed meds I’ve never taken, incorrectly spelled meds, meds that were the incorrect formulation or the wrong dosages…and, my medication allergies: INCOMPLETE – with the most important ones I list first on my printout – the ones that cause anaphylaxis – not even on the sheet. I guess they don’t care if I suddenly die from anaphylaxis on their watch.

I promptly wrote letters to the Patient Affairs offices of both hospitals. I enclosed the poor excuse for a “record” that the Worcester Hospital sent me, highlighted, noting all the errors and omissions.
I also quoted statistics from the IOM: 70% if medical errors are cased by improper treatment. 90% of those are preventable (a 2008 statistic). Also, medical errors are the 7th leading cause of death in the U.S. (Another IOM statistic from 2013. (The Worcester hospital refuses to accept email – ill dry to flag down a carrier pigeon tomorrow….come on, get with the 21st century like the rest of the medical community!!)

What a warm and comforting feeling that gives me when I have surgery planned at one if these hospitals in a less month. Perhaps, If I had a death wish, it would.

This oddly follows in sync with an article published by Medscape recently (Oct 24, 2013) that asked doctors what they thought the top ten barriers were to the practice of medicine today. Guess what several referenced – technology. One doctor ( Henry R. Black, MD of NYU Langone) specifically mentioned the incongruence of EMRs – systems that were supposed to simplify and streamline patient care, allowing all doctors access to a patients test results and specialists’ reports. The problem? No practice or hospital uses the same EMRS, or EMRs that can interface!! What are we paying for?

This has become the number one problem in healthcare, hands down.
How can you even worry about doctor-patient communication when the doctor isn’t even looking at The correct information.

Discuss this with your doctors and quietly freak out…and PLEASE check your EMRs for accuracy! If mine are incorrect in 2 of the 5 major healthcare systems I deal with – I fear what may or may not exist in the other three.

After much contemplation, many rough responses from the hope-and-unicorns crowd, and watching yet another TED talk ( if you don’t know what TED Talks are – Google it!) given by ePatient Dave, I’ve decided that I want to shift my focus away from whining and ACTIVELY work change the face of health care as we know it today. I want to make a real difference.

I want to call doctors on their sarcastic attitudes about so-called “cyberchondriacs” and hold them responsible for dismissing patients as “horses” that think they are “zebras.” (We are are familiar with that quote.)

Let me fill you in on a brief example of 2 exchanges I had on an iPhone app called “HealthTap” that makes bold claims in their Mission Statement such as: “We’re dedicated to improving people’s health and well-being by providing our users personalized health information and free online and mobile answers from thousands of the best physicians in the U.S. Our goal is to help people better understand health, make more informed health decisions and find the very best doctors.”

(REALLY. Bullshit, not in my experience with any if their so-called experts.)

We’re also committed to our physicians. We want to help doctors better serve existing patients, find new ones and build their reputations by We’re also committed to our physicians. We want to help doctors better serve existing patients, find new ones and build their reputations by demonstrating their expertise online.

We believe that everyone has the right to free, reliable, and independent health information. We also believe that the most trustworthy health information comes from medical experts and that the best health decisions take into account unbiased expert knowledge, community insights and relevant data.

We’ve created HealthTap to reflect these beliefs, and to be available to you, anytime and anywhere.

Again – BULLSHIT,

I want to tell these so-called expert doctors that tell me things such as. “There’s an old saying in medicine that ‘common things happen commonly. The corollary to that wisdom is that ‘rare things happen rarely.’ Baroreceptor failure (a condition that has been postulated by my docs IRL that I MAY have.) is so rare, that you can forget about it. look for a different explanation .’
Wow. Really??? Telling a person to just forget about a diagnosis!!! bold move. Essentially telling a patient that they couldn’t possibly have anything rare (especially after providing this service with my entire recent health (or lack thereof) history. Not only ballsy, but incredibly disrespectful truly and downright inappropriate.
Same doc (lucky freaking me) – different query: I have bizarre BP readings. Very. I have a well-documented autonomic disorder, that primarily effects BP regulation and responses in the body. I write this service about a very strange reading I just got – just my luck – same snarky doc answers my question. This time, his words of cluelessness were insulting AND stupid: “it isn’t physiologically (possible) to have pulse pressures of 10-20.i doubt those pressures are accurate and that your cuff is mis-sizedor that your device is inaccurate, mist likely the former. A common cause of this is a large arm. Is your arm large?”
Keeping in mind that the docs that answer these queries have access to ALL of our health info, from age to weight (hint hint) and all of our most recent diagnosis, data and medications.
And this guy not only told me I don’t know how to take my BP, I don’t know how to accurately record my BP, but I’m also FAT,
This is just a tiny example of the poor quality, “allegedly” cutting edge medical help available me via an app on our awesome iPhones. I have had several responses from docs just as rude and horrible – I just cannot believe that people are using this app instead of going to valid, genuine medical websites (not WebMD or “support sites” sprouted like weeds on Facebook, for example) but sites like the Mayo, Medscape, NEJM, MedWhat, UpToDate, etc.
I want to have an effect on sites like this HealthTap – they make bold claims, then treat educated people in distress like dolts.
I have more stellar examples of rudeness and incompetence. But I won’t bore you,

I want to change things for patients. I want to make THEM the respected person in the doctor-patient relationship, I want patients to be keenly listened to as if they were the most important person in that doctors’ office.
Because they are.

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Today’s assignment: create a “must follow” list for our community.

Living With Bob – the best-written, honest and realistic look Ito the life of a wonderful gal with autonomic systems disorders, and the many weird comorbidities that come along with a true ANS disorder. Educational, humorous, poignant, unembellished down-to-earth truths,

Mental Illness Happy Hour – Fantastic weekly podcast and website and hilarious Twitter feed the explores the lives of those with “diagnoses” that live and function in out society quite well. As the het, Paul Gilmartin put it,m “it’s not a substitute for professional counseling – it more like a waiting room that doesn’t suck! Creatives (comedians, actors, artists, Gulf War vets and listeners are the weekly guests. You will know many of them, and want to know those those that are “new to you.” Website, mentalpod.com offers lots of surveys that you can take to anonymously share all those secrets, shames, struggles and frustrations. A forum to connect with other listeners is also offered. The Mental Pod combo is the best thing to happen to mental Heath since SSRIS!

WEGO Health Facebook Page: a home or health advocates – sponsors blogging challenges, offers round table discussions and provides info about upcoming events in which advocates are encouraged to attend and participate.