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Cope. 
I don’t like the word. It has a broad definition. It can have positive or negative meaning, depending on your personal context. For me, “cope” is synonymous with “struggle.” It’s juuuust squeaking by. It definitely does NOT mean “thrive,” or that my current quality of life is/would be tolerable for any other reasonable human. 

I am writing this for a few purposes:

1. I simply cannot be the only one trapped in an area where medical care has become reactive and responsive only if you check all the boxes in the doctors’ recipe books. Whatever happened to “quality of life?” That catchphrase has become as pass√© as leg warmers. Most of the docs I have encountered in the past few years seem hell -bent on trying to prove there is nothing physically wrong with me despite truckloads of evidence and decades of issues. So, basically, my healthcare is left completely up to me. Thank goodness I have a very strong research background and enjoy digging for answers. With the next few posts,  I want to share with others what products and strategies I use to get through each day – to “cope,” or – “suck-it-up.” 

2. To address the “try yoga, acupuncture, tong ren, riding unicorns” contingency that never seems to grasp that I’m a 40 year veteran of “sucking it up,” and that when you suffer as much as I have, there literally isn’t many options left that I have not tried. 

As usual, don’t expect rainbows, bunnies, smiling pictures of me wearing lippy and posing for imaginary paparazzi. That is just not how I roll. 

If you have read my “about me” posts over the past several years, you already know that I have some odd medical issues, mostly connective tissue weirdness, some possibly related to Ehlers Danlos, and certain maladies of which I express symptoms are known comorbitities. I guess I should dance with glee knowing that I not alone in my struggle. But, thanks to undiagnosable (or more accurate: blatantly ignored by health care providers) nerve damage/weakness/pain/muscle atrophy from my 2015 hip replacement, there will be no dancing here. ūüėź

“This Zebra’s Guide to Sucking It Up” will cover: 

1. Corseting for medical reasons (Hey! No judging without learning about real corsets! They aren’t just for fantasy/cosplay/Ren Faires.)

2. Compression wear/wraps/tape

3. Activity and sleep trackers

4. Compensation, adaptation and the cascade of suck – creative ways to “suck-it-up” 

Thanks for reading! 

I’ve been absent from my blog for awhile.
I am so emotionally downtrodden from dealing with all the paternalistic and micro-specializing docs that don’t seem to care that we are REAL patients that need their help,

Looks like I’m gonna have to, once again, go out if state to try and get help, as not a single specialist I’ve seen will look at me as a whole person, consider my medical history, current symptoms, environmental factors, etc.
It’s humiliating.

All of my research is seemingly for naught / other than that it assures me I’m not crazy – it is just that the doctors I see don’t stay current on advances in their own field. (Umm, if I can stay current on advances in their fields vis a subscription to Medscape Updates – so can they.) It’s their JOB after all.
How many doctors do I have to see for help that haven’t a clue about recent devices/meds and treatments recent approved by the King of Dealaying Necessary Treatment -the FDA – and therefore can’t even address the reasons why I am coming to see them: will these new treatments work for ME?
How do I know- I’m just an informed patient forced to advocate for myself – they are the ones that went to medical school…
I keep going cack to the first line if that Hippocratic Oath that physicians take when becoming doctors…”First, do no harm….”
Then I think about all the harm they have caused me emotionally and physically – the former for not believing me (see the Medscape article: “a narrative review of impact of disbelief in chronic pain” for some eye-opening facts…and the physical pain I suffer daily, some worse than others, mostly b/c they refuse to try and figure out WHY I have these issues – and just blow me off, stop returning calls, telling me flat out they can’t offer me any hep, or responding to my queries with downright nasty emails.
How easy it has become to give up on my own pathetic life, seeing than well over a dozen Boston survivalists have. Why should I bother trying to advocate for myself anymore when it seems to me, that based on the treatment (or lack thereof) I receive, sends a message loud and clear: “YOU ARE NOT WORTH OUR TIME OR ENERGIES”
If one more doc gives me that snarky “talk to your PCP about that” – I may just make a bigger deal about this stuff then I already TRY to do. Don’t these specialists realize I was sent to them BY my PCP??? Can’t they comprehend that? Nah, obviously not. I get that response far too often.
My wonderful PCP is at a loss as well. What is SHE supposed to do – she is doing the research and calling around, finding docs that specialize I issue I have. Then, these specialist disrespect her by saying the know nothing and that I should call my PCP. Asses. Plain and single. What the hell are they even doctors for, if helping a patient is such a burden for them.

I am DONE being a docs’ doormat, his burden, his waste if time. – I refuse to give another arrogant 30 yr old z chance for him/her to slander me In their reports that are part of my record with snarky and untrue comments about me personally…a chance got him/her to tell me everything is FINE when I’ve got abnornal test results I could paper my walls with….I’m done.

Last I checked I was a human…you know, a carbon-cased life form of extremres
but I guess turning 50 makes me less of a human, and less value to the world In general.
These arrogant status-seekers wouldn’t miss me if I did die from something they missed –
And they are missing quite a bit.
There are 7 billion people + on this planet – why should they care about ME?

How psthetic has heath care become in the US?? (Heck, don’t get me started on the superior treatment those in Australia receive compared to the US for my conditions.)

Yes, if my heart is “fine doc then why do I have debitTing chest pain daily? Numb arms/difficulty breathing/Irregular hear beats from 30-120. Sx that would send anyone else to the Art-but no, not me. I’m FINE. I had a cardiologist tell me so- after the 5 second EKG). Have these cardiologists read hoe inaccurate these tests are for women…oh, that’s right, they don’t read updates meant for them and published by their peers of Medscape.

They would just as soon see me die so I can be one more cadaver for them to make fun of in medical schools.

A CHALLENGE: for ALL Someone, please , prove me wrong- I challenge you / find me ONE doc, here in the US , that cares about MY life, my health (or lack thereof) , my ongoing and worsening symptoms….I double-dog date you…you won’t find a a single one..
Looking forward to some interesting responses!

Let the challehe begin!!!

Comes from THIS article....

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

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.

This blog is a review of a review article published on Medscape (http://www.medscape.com/viewarticle/810602) titled: “A Narrative Review of the Impact of Disbelief on Chronic Pain.” (originally published in¬†Pain Manag Nurs.¬†2013;14(3):161-171.)

{NOTE: The references I make within my review are to try to preserve the integrity of the original citations within the original article. I have not provided the actual references in this blog for the sake of brevity  Рto further research my review of the original review, please see the original Medscape article and/or the original article in the Journal cited above.}

Firstly, I must offer kudos to the professionals that wrote the articles reviewed in the article Рand to the authors of this review Рfor pointing out the bias, shortcomings and discrimination that occurs by medical professionals, friends, coworkers and family members all over the world when in come to the issue of pain. The focus of the articles reviewed were primarily female patients, but men certainly are not exempt from the treatment this review discusses.

Just last week, I sat in an office at Massachusetts General Hospital for over an hour, where a rather large poster exclaiming “pain is the 5th vital sign,” and how healthcare works must ask and patients must “speak up” in if they are in pain because they “deserve treatment.” HA. What a joke. ¬†No one asked me about my pain. Did anyone there really care? ¬†Doubt it.

Articles for the review published by Medscape were obtained in the usual way – though a search of the standard, well-known, world-wide databases of peer-reviewed medical journal articles. No Dr. Oz or WebMD rhetoric here. The main themes focused upon by the reviewers were:

1) the effect of feeling stigmatized – feeling “deeply discredited” (Goffman, 1963) ¬†by not having one’s pain believed (via actual or perceived encounters).¬†Sources of stigma include the medical professions, employers, the general public, family, friends and spouses

2) the experience of isolation (Walker, Sofaer, and Holloway, 2006; Clarke and Iphofen, 2008) because of disbelief of others that the patient actually experiences pain or that the person actually has a medical condition; and

3) emotional distress suffered because of the response received from healthcare providers to the patients’ admission that they were in pain¬†(Allcock et al., 2007;¬†Holloway et al., 2007, and many others)

The literature cited noted that when a patient says he is in pain, it exists (I am paraphrasing here). ¬†It was noted that to have one’s pain disbelieved by one’s own physician is the failure to accept the account of patient as truthful. This opens up the doctor-patient relationship to distrust, suspicion, supposition and stereotyping of ALL kinds far too numerous to list here.

As far back as 1992 (before all the hoopla over the fear of the misuse of opiates was taking up loads of bandwidth, media attention and research monies) ¬†a concept known as “delegitimization” was discussed in the literature by Norma Ware. She referred to studies of anthropologist Arthur Kleinman, who defined delegitimization as “the experience of having one’s perceptions of an illness systematically disconfirmed.” The Medscape authors point out that delegitimization and disbelief are not necessarily synonymous, as delegitimization can occur unintentionally, whereas disbelief is just that – disbelief. ¬†The focus of the review article is solely on disbelief.

[Wow. How many of us that suffer from chronic medical problems have experienced THIS? Does it help to know we are not alone? Do we wish this Medscape article I am reviewing was published in the New England Journal of Medicine or JAMA and not some obscure nursing journal. HELL YES! Perhaps, then the medical community would sit up and take notice.]

Often, patients complaints of pain are chronicled by doctors as “psychological” or “trivial.”

It is noted that often the doctors disbelief of the patient’s pain compromises the accuracy of the pain assessment (which is supposed to take place as part of most exams, but my experience has been that the topic is rarely brought up at all).

Although the authors of the instant article wanted to include a complete social context for the patients experience of disbelief, i.e.:  within their workplace, among friends, and with family. The focus of the historical literature is on the consequences surrounding the disbelief of chronic pain and the ensuing implications this may have for health care professionals, and thus, the majority of the article maintains this focus.

[This is not entirely a bad thing – as we all know – if our docs don’t believe us, it is likely not many other folks will either. Negative attitudes about a patients chromic pain are often recorded in the person’s permanent medical record – which are passed doctor to doctor, and practice to practice, thus predisposing the patient to being looked upon with a raised eyebrow by any new healthcare professional from which she may seek treatment, often before she is even seen.]

As those of us with invisible, chronic medical issues can attest, one often is made to feel that you MUST have a real and legitimate (and visible) physical pathology. ¬†The review article points out that the due to the lack of physical evidence, a psychological cause is often suggested. The immediate thought is the “if the cause is not in the body it must be in the mind (Lillirank, 2003),” leading the patients to be thought of as lazy or crazy. [Nice. I can just image what my doctors must think of me.]

One of the most interesting discussions I found in this review article was that of the effect of disbelief on self-identity. Numerous studies over the past decade worldwide support the profound impact that symptom disbelief has on identity and esteem. (Please see the original article, referenced above, for the citations to these studies.) Disbelief of chronic pain is prevalent amongst male medical professionals – researchers received some incredibly horrifying responses to queries about male doctors’ female chronic pain patients. Women were described as “fat and tearful.” attention-seeking, and “likely to have a psychological component” to their complaints of pain.” Researchers found that women were aware of these perceptions and to try to preserve a positive identity, often sought to underplay or overplay their pain complaints. Both strategies, however, fail to lead to successful and proper treatment for their condition. (The review also noted that men also experience negative treatment from their doctors upon self-reporting of chronic pain, but those studies oddly seemed limited only to veterans.)

Isolation as a result of being a chronic pain patient is far-reaching and invades every aspect of a person’s life. It is overwhelming to image how one doctor’s negativity and ignorance can proliferate throughout a person’s entire life as a virus, leaving that life in ruins. ¬†Patients reported loss in “areas such as work, finance, relationships, identity, and hope.” ¬†One participant captured the feeling quite well: ¬†“you’re stuck at home, you become a prisoner in your own home.¬†Your life is the pain is your cell” [I couldn’t have said it better myself.]

Often close friendships are lost, further physically and socially isolating the individual.¬†We all know that pain restricts activity, which subsequently isolates people. ¬†A male participant in the Walker et al. study sadly described how ¬†he lost his relationship with his wife, stating: “my wife even turned on me, thinking it was all put on‚Ķfrom that point on I’ve just lived on my own.”

The lack of a medical diagnosis Рa name for the pain and suffering the patient experiences daily Рhelps to keep the patient silent out of fear of negative judgement by others.  [This is why when we finally GET a diagnosis Р we are happy Рwe have been validated!]

It is so much harder to deal with daily pain without an emotional connection to others. As stated in the Medscape review,¬†¬†“individuals subsequently suffer not only the pain itself but also the isolation caused by the hidden nature of pain. This unseen pain hides from others, what is for many, a major part of their lives.”¬†This statement is a sad and pathetic testament to the lives that many of us are forced to live due to the insensitivity of the medical professionals we must turn to for help. As mentioned earlier, the medical profession is even more sensitive to anyone claiming “pain”‘ as a symptom due to the plethora of addicts misusing some of the drugs that unfortunately, some people actually DO need for their conditions. The Medscape review is full of examples of poor treatment of patients by medical staff, derogatory name calling (including “hypochondriac”, “drug addict”, “liars”), and the effects of the stigma suffered by these patients.

After experiencing disbelief, it has been reported that chronic pain patients often experience an even deeper depression, and some contemplate suicide. Oddly, there were studies that sought to refute this ¬†– I found that odd. It seemed as if the medical profession didn’t want to take responsibility for confounding a condition that they had created and ignored.

Here is another brilliant quote form the Medscape review: “A failed battle to convince the health professional of the legitimacy of one’s illness can have painful consequences for the individual.” [I would have used MUCH stronger language than “painful consequences…”]¬†Simply put, patients are left angry and hurt when they fail to receive a diagnosis. Often, those that pursue second opinions from other specialists due to the disbelief of the original physician leads to additional disbelief because of the refusal or hesitation of the first physician to provide a diagnosis, leaving the second-opinion doc to be “suspicious.” And thus, the cycle of stigma continues, and the effect on the patient becomes more profound.

[Does this sound all to familiar to anyone besides me?]

As part of the conclusion, the¬†Medscape review article provided these “Recommendations to Health Care Professionals:”

1) Professionals need to be aware that using psychologic explanations of pain can be experienced as a denial of the individual’s pain. Caution must be exercised when using psychologic models with patients.
2) It is essential to be aware of the tension that patients can experience in the expression of their pain. Professionals might seek to openly invite patients to express their pain. This could form part of a regular assessment of the patient’s vital signs.
3) As the professional understands and affirms the patient’s story of their pain, both parties may develop a shared understanding, helping to address not only the patient’s experience of isolation but also the anger and frustration that can stem from not being taken seriously.
4) Empowering the patient with health care options could be an essential step toward countering experiences of helplessness, particularly given the lack of control many patients experience in the persistence of their pain

My requirement would be to make these recommendations mandatory for DOCTORS – not just support personnel. It is the doctor that writes in your chart ¬†– and that chart follows you for the rest of your life (especially now, with the advent of the EMR). I don’t want derogatory comments and supposition about my condition permanently following me around. Would you?

What are your thoughts about these recommendations?

Would you add to them?  Would you change them in any way?

What experiences have you had with being believed about your chronic illness and pain by your medical professionals, your families, friends, coworkers and occasional parking-lot diagnostician?

Here’s some info- albeit not empirical – a good posting that describes a DYSAUTONOMIC’s experience (not just POTs patients). This was posted on another bloggers blog and I’m re-posting here. ..and, oddly, contains passages that I, (myself..me) had written in response to a posting on someone else’s blog months ago.
So I learned a lesson…always make sure you post your musings on your own blog to preserve ownership.
Regarding this “article” – It describes FAR more than POTS-which, is but a small percentage of those that have the symptoms described in this re-posting and apply to most folks with dysautonomia. (Disagree? I’ll let my dysautonomic specialists know.)
I often ponder why it is that most POTS folks seem to claim ownership of the dysautonomia diagnosis ….it’s as if the rest of us that have another, and often untreatable, form of the disorder just don’t matter at all….
A note to those that fit into this category (the non-POTS group) – you are not fighting this invisible illness alone. Medscape has a fantastic educational page on Autonomic Disorders in their education/diagnostic section. We do exist.

Screen Shot 2013-04-12 at 8.50.56 PM

This prompt – to go back in time and think about what we would change on our day of diagnosis…well. I don’t HAVE a day of diagnosis. I have a series of miserable experiences in doctors’ offices where they tell me “something” is wrong, but they aren’t sure what. I’ve been told I’m a “bonafide medical mystery.” I’ve been told that I have strange blood test results tat don’t point to anything specifically wrong. But no one has ever given me a bonafide diagnosis.
I live for the day when I am given a diagnosis, so I know what is wrong with my body and why I have all these strange symptoms.
Until then, I’ll sit here in my latest get-up: a wear-home EEG test

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