Our New Normal [s] » Our little family's realization, that there is no normal

Chemophobia, Empirico-phobia and Truth-o-phobia

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Have you ever hear about the Reticular Activating System?

This is a pretty important part of our brain that, as far as I can understand these matters, helps that great organ transition from times of sleep to times of waking and alertness.  Another cool little function of the RAS (we’re on an acronym basis, now) is that it helps us focus our attention. This is a key role in a world where our senses are bombarded with millions of stimuli at every moment. RAS helps us wade through them all and sort the ones that are relevant to our awareness.

Did it ever happen to you when you were pregnant that “everybody” around you was pregnant, too? I bet you that at least you started to see babies “everywhere” and associate “everything” with babies…

That’s RAS….

To me it happened with my car.

I used to make fun of the Toyota Prius (Prii, in the plural), the looks, the drivers, and I would pretty much ignore the little car, until we bought one. Since I began driving it, “everybody” drives a Prius. I see them “everywhere”. I see the myriad people who own them. I can differentiate between the generations of Prii. My alertness about the car is heightened and it now gets caught in my web of awareness, all the time.

So RAS is like the web the brain weaves to catch things up to our level of conscious attention.

The same started to happen when our daughter was diagnosed. My alertness about that particular subject was raised to “RED”. (Remember that silly, color-coded “Terrorist Threat Level” warning system of a decade ago).

And that is how some time ago I came across this article from the New York Times, about a mom (and family) and their battle with another one of these weird and blasted conditions.

The article is still available here:
http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=all&_r=0

In it, Susannah Meadows (the mom), tells their story about her son, Shepherd (cool name, really cool name), in his struggle with juvenile idiopathic arthritis (J.I.A.). This is another one of those rheumatic conditions that cause inflammation and all that goes with it.

Mrs. Meadows and crew were very brave and determined. Together they worked through a maze of treatments and alternatives, all the way down to the experimental “fecal transplant” therapy. (I told you they were brave).

The good news is that Shepherd is doing great, according to the article, and they have adjusted to a different lifestyle.

Now, my web-like friend RAS also caught this article:

http://www.slate.com/articles/health_and_science/medical_examiner/2013/02/curing_chemophobia_don_t_buy_the_alternative_medicine_in_the_boy_with_a.single.html

This was a response from Michelle M. Francl, a professor of Chemistry at Bryn Mawr College, to Mrs. Meadows’ original article. It was posted on the comment section of Mrs. Meadows’ piece.

Frankly, it is not what I would expect from a “scientist”. But it is what we have come to expect from medical practitioners. Unfortunately, most often those two terms are not related anymore.

The response is logical and poignant, a very well structured rebuttal. But as is usual from the medical field it is condescending and patronizing.

First of all, if what you would like is to have a conversation stand side-by-side with your interlocutor. Do not argument a put-down. Don’t attack the other person’s beliefs, even if they are wrong. Don’t call them names and highlight their ignorance or fears. That will most likely engender a defensive posture, not a conversation. After that, both side are locked in their positions and nobody will sway the other to “their” side.

In my experience, medical professionals overuse their acronyms and lingo, and get frustrated when you ask for clarification. They issue diagnostics and prescribe compounds, and also are frustrated when we have questions.

They often suffer from that “Curse of Knowledge”. They have forgotten what it is not to know, and therefore treat us mere mortals as such.

Now, that has been my experience, let’s go to the response:

Next, how about the allegation of suffering from “Chemophobia”?

Phobia. Merriam-Webster’s definition of the word is:

an exaggerated usually inexplicable and illogical fear of a particular object, class of objects, or situation.

“Phobias” get thrown around quite often nowadays. Particularly in politics or in the battles of “culture wars”, when there is a disagreement one side or party will accuse the other of a phobia (usually the side that considers itself more enlightened will be the accusing side).

You have heard of “homophobia”, “Islamo-phobia”, “xenophobia”. However, whenever such a label is suggested the issue rarely has to do with any fear at all, much less with an “inexplicable or illogical fear”.

But apparently now, these pseudo-phobias are making inroads in the world of medicine.

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In my humble and uneducated opinion, skepticism about medical treatment is nothing like a phobia, in the strict sense of the definition above. Quite the contrary. It is healthy to question and keep an open mind to options and alternatives.

Here are six simple reasons why the irrational and illogical response is NOT to question your medical practitioner:

They are called “practitioners”. There is no app, but there is a reason for that.

these are the professional experts who assured us that breast milk and breastfeeding was the same as formula given through a bottle.

These are the same professional experts who assured us that processed fruits and foods had the same nutritional value as fresh fruits and veggies. They thought the skin had not benefit at all.

These are the experts who were recommending smoking to calm your nerves and soothe your throat.

These experts prescribed lobotomies for schizophrenia patients 100 years ago.

These experts prescribed cocaine and morphine as miracle cures, a little over 100 year ago.

I have to vehemently disagree with Madame Francl. it is not a phobia, if it is a fear at all. It is a very healthy response to question and challenge medical doctors, and professional chemists, for that matter.

Could you call it irrational fear when you read the side effects of steroids or chemotherapy? Have you read the list of “possible side effect” for some of those “brand” drugs, the ones used to treat conditions like J.I.A.?

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Please visit http://www.humira.com/?cid=ppc_ppd_hum_ggl_brand_4452 .

The first paragraph on the page is the following:

Safety Considerations

Serious infections have happened in people taking HUMIRA. These serious infections include tuberculosis (TB) and infections caused by viruses, fungi, or bacteria that have spread throughout the body. Some people have died from these infections. HUMIRA may increase the chance of getting lymphoma, including a rare kind, or other cancers. HUMIRA can cause serious side effects including hepatitis B infection in carriers of the virus, allergic reactions, nervous system problems, blood problems, heart failure, certain immune reactions including a lupus-like syndrome, liver problems, and new or worsening psoriasis.

Would you call irrational being concerned about that? Now, this drug has helped and is helping millions of people, including kids with J.I.A. But regardless of the probability of suffering from these side effects for the aggregate of the population, if you are one who is affected, you are in deep trouble.

How about Lyrica, a drug used to treat Fibromyalgia, another auto-immune condition. Here is their second paragraph and the a few following:

IMPORTANT SAFETY INFORMATION

LYRICA is not for everyone. LYRICA may cause serious, even life threatening, allergic reactions. Stop taking LYRICA and call your doctor right away if you have any signs of a serious allergic reaction. Some signs are swelling of your face, mouth, lips, gums, tongue, throat or neck or if you have any trouble breathing, or have a rash, hives or blisters.

Drugs used to treat seizures increase the risk of suicidal thoughts or behavior. LYRICA may cause suicidal thoughts or actions in a very small number of people, about 1 in 500. Patients, family members or caregivers should call the doctor right away if they notice suicidal thoughts or actions, thoughts of self harm, or any unusual changes in mood or behavior. These changes may include new or worsening depression, anxiety, restlessness, trouble sleeping, panic attacks, anger, irritability, agitation, aggression, dangerous impulses or violence, or extreme increases in activity or talking. If you have suicidal thoughts or actions, do not stop LYRICA without first talking to your doctor.

LYRICA may cause swelling of your hands, legs and feet, which can be serious for people with heart problems. LYRICA may cause dizziness and sleepiness. You should not drive or work with machines until you know how LYRICA affects you. Also, tell your doctor right away about muscle pain or problems along with feeling sick and feverish, or any changes in your eyesight including blurry vision, or if you have any kidney problems or get dialysis.

Some of the most common side effects of LYRICA are dizziness, blurry vision, weight gain, sleepiness, trouble concentrating, swelling of your hands and feet, dry mouth, and feeling “high.” If you have diabetes, tell your doctor about any skin sores.

Source: http://lyrica.com/?source=google&HBX_PK=s_lyrica&o=44962818%7C221361397%7C0&skwid=43700003232590539 

This is the information the chemists are offering about the product they are trying to sell. Can you call anyone irrational and illogical for being hesitant about giving this to their children????

Actually, my experience has been that medical doctors who DO suffer from two kinds of irrational and illogical fears:

Attorney-phobia/lawsuit-phobia: irrational and illogical fear of being served legal papers.

Empiric-phobia: irrational and illogical fear of deviating from anything learned in Medical school or any treatment that has no general consensus among peers in the U.S. Probably derived from a pre-existing condition: “Lawsuit-phobia.”

 

The first one I understand. It is the malady of our tort system, that so many unscrupulous lawyers game the system to make a quick buck. The consequences for our medical establishment and our insurance contracts have been devastating, way beyond costs.

The second fear confounds me. Medical professionals used to be curious and produce discoveries. They used to be “adventurous”. Seekers of alternatives, going for results more than dogma.

Now they believe that they are the sole possessors and purveyors of all medical knowledge. We have suffered from that myopic posture that assumes that all discoveries have been found, everything knowable is already known, and nothing else can be added to the medical cannon. If you question what they learned in college you are the heretic, the flat-earther, the truth-denier. The one with the phobia.

Keep this in mind; often times your medical practitioner maybe as hesitant and as afraid as you. Take them by the hand, in the best-interest of your daughter or son. You are in this together. Make them a partner, not a boss. You are risking all profits and losses together.

It is ok to question. It is ok to go “AMA”. (If you would like to be encouraged, read this wonderful book: http://www.amazon.com/Against-Medical-Advice-James-Patterson/dp/0446505242)

It is ok to stand up and have an opinion that, GASP, contradicts your doctor. Make them think, make them work for you and with you. Alas, they are not gods or angels. They only hold truths as they are known today. Or when they went to med school.

February 17, 2014 - 6:02 pm

Julia Goguen - In other words, Doctors know what they have collected. They don’t know everything. Armed with this knowledge, they try and make a dent in the voluminous sphere of the unknown while being expected to help people. The irritation at being questioned or challenged comes from a deep seated awareness of this truth. To ask too many questions outside the normal is to open them up to saying things which may not have already been litigated. They listen to the “research” being done by those who have more money and resources than themselves to treat things they can no longer afford to investigate for themselves.
The pharmaceutical companies are not the source of mercy. They are trillion dollar industries that can’t afford to make a mistake after investing in a new drug. So, often, a drug that has been deemed useless or dangerous for its initial purpose, is tampered with so as to alter it slightly thus allowing it to be reissued for a different condition by changing the name and the advertising hype. Have some extra drugs lying around that cannot be used for its initial purpose? Come up with a new disorder that can be treated with this. It has long been understood that the bright and brilliant future for pharmaceuticals has been the Diagnostic and Statistical Manual of Mental Disorders (DSM), now on its 5 revision. It is not only where authority is given for insurance companies to pay for treatments, it is also where new disorders are born which, feeds the entire industry cycle of practitioners,allowing the psychiatrist, the psychologist, and social workers access to the money cycle as well.
It is not purity of purpose that drives these companies. It is not a mission of mercy that informs their dedication. It is profit; the only pure and simply natural thing in the entire racket. Even in the days when the drug companies had a somewhat more respectable relationship with the government regulation boards with whom they share a bed, the testing was a sham. Did you know that when it was claimed that a drug had been tested and found safe, that the pool of participants upon which the testing had been performed was on males between the ages of 18 and 35-45, and not on the old, the young or the females?

The history of the drug suppliers comes from two backgrounds, the herb and natural products users for the alleviation and relief they offered, and the alchemist for the responses they hoped to control or cause.
Take care physicians, heal thyselves. Don’t delegate this most important responsibility for yourself to others. Use strong medications only after you are aware that you cannot derive the proper response on your own or when you have no faith in alternatives.

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