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The Big Business of ?Dead Peasants Insurance?

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This post is a break from my Invisible Illness posts. I’m taking the time to do some serious education, because right now, the FDA wants to take combination narcotic pain medications off the market, and there are a lot of people with cancer, sickle cell anemia, worsening pain syndromes, or who have just had surgery, who are at present relying on these medications. So this would NOT be a good thing. If you’d like to help avoid that, please go to this URL and sign the petition: http://action.painfoundation.org/site/R?i=xloKDfuL-3Vyja_LSVSKdQ. If you’d like to comment to the FDA directly, try http://www.regulations.gov/search/Regs/home.html#submitComment?=0900006480968c1a.

And please, if you watch either “House” or “Nurse Jackie” on TV, and you have a prescription for Vicodin, do NOT take it like those characters do on the shows. “House” would be a vegetable on life support if he scarfed that many Vicodin, and so would Nurse Jackie. It’s TV, people – fantasy – and in these cases, HIGHLY IRRESPONSIBLE FANTASY. They could use these shows to educate, like I am doing here. Instead, they opt to give the impression that the acetaminophen content in a Vicodin isn’t important. It is if you’d like to stay alive!

So, why does the FDA want to not only remove the Rx combination products (e.g., Vicodin, Percocet, etc.) from the market, but also to make plain, ordinary, everyday acetaminophen (the generic name for Tylenol) prescription only?

Because, folks, acetaminophen can kill you, put you on dialysis, put you on transplant lists for liver and kidney transplants, or leave you on life support with a family vainly hoping they won’t have to pull the plug even if you’re brain dead.

A friend of mine works in a major urban medical center, in the medical intensive care unit. She sees, apparently, an average of 2 – 3 cases of acetaminophen poisoning a month. Some are suicide attempts, but most are just plain all-American “if one pill is good, two pills are better, three pills are awesome, four are freakin’ spectacular” mindset. The rest are people who don’t understand that you have to read labels and make sure you don’t take too much of the stuff.

Taken as directed, acetaminophen is one of the wonders of the medical world. It doesn’t cause ulcers, and taken as directed, doesn’t damage things. But mess up that equation, and you end up in my friend’s MICU, or one like it somewhere, with a grieving family who is in effect praying for someone to die so you can get the organs you need to live.

HOW TO TAKE ACETAMINOPHEN (brand name Tylenol):

1. If you decide that you must have one of those combination medicines when you get a cold or flu, read the label. Every one of them has either acetaminophen or aspirin in them, mostly acetaminophen. That’s the part that takes care of “sore throats and muscle aches and pains.” So, DON’T TAKE ANY ACETAMINOPHEN (generic for Tylenol) WITH THEM!
2. Better yet, DON’T BUY A COMBINATION PRODUCT (or else leave the acetaminophen/Tylenol on the shelf). Many people are taking combination products for, say, a cough and runny nose, when they don’t have much of a cough and really don’t need that much cough medicine. Others are taking decongestants when the main problem they have is a cough. It’s better and safer to keep on hand cough medicine, decongestants, analgesics (this is the acetaminophen/Tylenol – an analgesic is a pain killer), possibly a spray or lozenges for a sore throat, and then take ONLY what you need to relieve the symptoms you actually have.
3. NEVER, UNDER ANY CIRCUMSTANCES, TAKE MORE THAN 4 GM/4000 MG OF ACETAMINOPHEN/TYLENOL A DAY! In fact, try to stay under 3 gm/3000 mg. There are 500 mg in every ONE extra strength acetaminophen/Tylenol tablet, and 325 mg in every ONE regular strength acetaminophen/Tylenol tablet, regardless of shape or fancy “fast dissolving” technology. You can take up to 8 extra strength acetaminophen/Tylenol tablets in any given 24 hour period – but you should try to limit that to 6 or less. You can take up to 12 regular strength acetaminophen/Tylenol in any given 24 hour period.
4. If you sometimes take extra strength and other times, take regular strength – ADD! Keep a running total of the mg you take in a 24 hour period.
5. NO “ROLLING” 24 HOUR PERIODS ALLOWED! Those of you who like to play with your over the counter medication and/or prescription doses know exactly what I mean. Count from midnight to midnight – ALL THE TIME. No cheating. No saying, “Hey, I just maxed out and it’s 8 pm, and I started counting at midnight, no problem, I’ll start counting at 8 pm.” If you hurt that bad, see a doctor about a pain consult.
6. If you get a prescription for a medication, always, always, ALWAYS ask your doctor how to take it, what interferes with it, and how to take it with other meds. Food, vitamins, homeopathic remedies, included, not just other over the counter and prescription medications. If you’re still not sure, ask the pharmacist for a consult. They’re the experts – even more than a physician, a pharmacist is your first line of defense against bad medication taking practices.

Now, let’s do some exercises, class:

1. June just had her wisdom teeth pulled. Her doctor gave her a prescription for Vicodin 2.5/500 and told her to come back in a week for a follow up. What should she ask him before he sails out the door?
2. Bob had surgery. He has been given Percocet to take, 2 every 4 hours as needed for moderate to severe pain, and has been told to take plain Tylenol instead whenever his pain isn’t real bad. What does Bob need to ask the doctor, who’s waiting expectantly for his questions?
3. Sam’s grandmother, whom he cares for while his parents are at work, has just gotten out of the hospital with a prescription for Lortabs 5/500. The intern didn’t do much teaching, and she can’t read the small print on the handout the nurse gave them. Sam knows his grandmother hides extra strength acetaminophen in her purse and sneaks them in the hospital because the nurses don’t always respond to her need for pain relief. What does Sam need to know from his grandmother and from the doctor?
4. Amy gave her grandmother Percodan for her severe pelvic pain about an hour ago. She asks for one extra strength acetaminophen, the first request she has made for it since 6 pm yesterday. Is it safe and why? What makes percodan different?
5. Jack has a really nasty cold, and a boss who says employees should stay home when they are ill – but who has always “counseled” those he manages if they take any time off for illness. His throat’s aching, he’s coughing, sneezing, his nose is running like a faucet, and every bone in his body is aching. He purchases a multisymptom cold product, acetaminophen, and aspirin. Which of the two pain relievers would it be safest for him to take? Which one would require that he add up how much pain reliever is in both the combination product and the pain reliever?

OK, here are the answers:

1. June should ask her doctor just what 2.5/500 means, and how to take the medication. And by the way, anytime you see a combination product like that, the first number is how much of the prescription medication is in it, the 2nd is how much of the over the counter pain reliever is in it. Combination products don’t just include acetaminophen, but can include ibuprofen (Advil, Motrin, and others) or aspirin. In this case, there are 2.5 mg of hydrocodone – the generic name for the narcotic – and 500 mg of acetaminophen. June would have to watch herself if she took plain acetaminophen in between doses of the Vicodin. Likely, she would have been told to avoid NSAIDs (naproxen, aka Aleve; ibuprofen, aka Advil/Motrin; and any left over prescription medications in that category). She might also have been told to avoid aspirin. This would be to allow healing without excess bleeding at the wound, which can sometimes occur in certain patients. Always, always ask your doctor!
2. Bob needs to ask his doctor how much prescription pain reliever is in Percocet, and how much non prescription pain reliever, as well as what type. In this case, there would be 5 mg of oxycodone and 300 mg of acetaminophen in each tablet – a bit shy of the 325 mg in a regular strength acetaminophen/Tylenol. If Bob takes one Percocet for pain, and in 4 hours feels that he doesn’t need anything quite so strong, he might opt to take 1 or 2 regular or even extra strength acetaminophen/Tylenol. Here’s where the adding comes in: he has, let’s say, 300 mg on board from taking one Percocet; he takes one extra strength acetaminophen at his wife’s suggestion because he told her he feels like 2 regular strength would be too strong but one wouldn’t be strong enough. Now, he has 800 mg of acetaminophen on board. 2 hours later, after running errands, he is in a lot of pain and takes 2 of the Percocet. Now, his total is 1400 mg for the day (300 when he got home, 500 a few hours later, and now 600 more). He can still take a total of 2600 mg of acetaminophen in this 24 hour period. No more, and he’d be better off with less. He gets ready for bed, and wants to take something stronger than 2 Percocet, so his wife suggests he take one regular strength acetaminophen with the 2 Percocet, and talk to his doctor in the morning for suggestions on his pain control regimen. He can safely do that because his total for this dose will be 925 mg of acetaminophen. He’s still a ways away from that total daily dose of 4000 mg or, for safety, 3000 mg.
3. Sam needs to know how much acetaminophen his grandmother took from her purse and/or the nurses giving it to her, and he needs to know how much acetaminophen is in the prescription. His grandmother tells him that she actually got the nurses to give her acetaminophen, but they were round and she’s not sure how much. She says they refused to give her anything stronger. She says she got a dose around 1 am and another when she got back from PT around noon, and that she did not use any from her purse. Sam asks the nurses and finds out his grandmother got regular strength both times, 2 pills both times, and that she did not get any other acetaminophen containing medication. She has had 1300 mg of acetaminophen. The doctor tells him that Lortabs have 5 mg of hydrocodone – the prescription element – and 500 mg of acetaminophen, and that his grandmother should take no more than one every 6 hours. He now knows his grandmother can get a dose of the Lortabs once they get the prescription filled at the drugstore, and that if she takes 2 doses total, she will have added 1000 mg to her acetaminophen doses for a total of 2, 300 mg. That would allow her to take a regular or an extra strength acetaminophen between the Lortab doses if she was hurting badly.
4. Amy can give her grandmother up to 8 total extra strength acetaminophen (2 every 6 hours), or 12 regular strength acetaminophen (2 every 4 hours) maximum, preferably less, because even if you have aspirin and acetaminophen available, it’s best that you still stick to 4000 mg max, 3000 mg preferred, for BOTH aspirin and acetaminophen combined (unless a doctor gives permission for you to take more of either/both). Percodan is different; it is made with aspirin, not acetaminophen – it contains 5 mg of oxycodone and 300 mg of aspirin. PercoCET is made with acetaminophen – proving how important it is to be knowledgeable about what medication you take. If Amy’s grandmother had been allergic to aspirin, as many people are, taking PercoDAN instead of PercoCET would not be a good idea! And now, you also see how easy it is to make medication errors! So, at home or in the hospital, be involved in knowing your medications and have family or friends help if needed.
5. Well, for one thing, Jack would be safer making purchases of one medication for each symptom; if his aches and pains go away before his cough and runny nose do, he’s taking unnecessary medication. But since he insists, he’d need to find out just what was in the combination product. Some have aspirin only, some have acetaminophen only, but some have a mix of BOTH aspirin AND acetaminophen! And the total daily dose of aspirin is THE SAME as the total daily dose for acetaminophen! So, if Jack’s combination product has all acetaminophen but no aspirin, he’d be safer to use aspirin if he has breakthrough pain; if his combination product has aspirin, he’d be safer to use acetaminophen if he has breakthrough pain. If his combination product has both, he’s going to have to figure out how much of each he’s getting if he takes the medication as prescribed. It’s advisable to take either aspirin or acetaminophen, not both! In combination products that contain both aspirin and acetaminophen, the doses of both combined should not exceed 4000 mg a day. Example: If Jack takes his combination product every 4 hours, each time, he is getting 200 mg of aspirin and 200 mg of acetaminophen PER TABLET – which is the most common dosage for combination products (there are analgesics with that combination; one of the types of Excedrin has this combination). Thus, taking 2 tablets every 4 hours is going to give him a total of 2400 mg of aspirin and 2400 mg of acetaminophen, a total of 4800 mg  – already well over the recommendation of no more than 4000 mg a day of a total of both. Unless a doctor tells you that is OK, NEVER DO THIS. Although he’s got way less than 4000 mg of acetaminophen and way less than 4000 mg of aspirin, you don’t take both to the maximum daily dose. You take both to a total of 4000 mg COMBINED.

Now that you’ve nad some exercises, you can see it’s not real easy – but with time, it gets easier. And after all, isn’t it better to keep your own liver and kidneys, avoid dialysis, and stay away from expensive ICU stays in hospitals?

Other medication tips: Always drink 6 – 8 oz of water, not soda or tea/coffee or juice, with your medications, to ensure they get to your stomach and don’t get stuck in the esophagus (food tube between the mouth and stomach). Some medications work better with food, some work better on an empty stomach; for some, it doesn’t matter. Pay attention to how to time pills with mealtimes.

BE SAFE!

Many invisible illnesses are recognized as legitimate medical conditions and have always been so recognized. I am not going to address those in this section. I am going to introduce those invisible illnesses that are not always recognized as legitimate.

Sometimes, it’s racial or ethnic prejudice. Other times, it’s sexism. Or just a refusal of the medical community to believe there is yet another disease out there that needs research dollars, or claims to need them. A lot of times, when conventional tests can’t detect something, medical personnel make the erroneous assumption that the tests we have can detect all known illnesses – which they can’t. Rather than try and research yet another disease on an ever-shrinking medical research budget, the medical profession labels it a psychiatric or substance abuse disorder – if they give it any credence at all.

One “invisible illness” that wasn’t given complete credibility for decades, despite microscopic evidence and a name as early as 1910, is sickle cell anemia. In this case, racism was largely responsible for this misconception. Research started late, pioneered by people who believed that African Americans had a legitimate disease, that the sickled cells were not just some sort of  anomaly peculiar to the race, but a real problem. And research is really still in its infancy. The people who have it hurt, at times very badly. Denied adequate pain relief by the medical community in the past, and too often in the present, the only thing available to ease the pain was to drink alcohol, or perhaps get illicit drugs to ease the pain (or both). Sufferers who used alcohol or drugs to get relief from pain were told that if they quit being “junkies” or “drunks,” they’d get rid of the pain. There was little if any credence given to the consideration that use of these substances was to controlpain, not cause it, nor that this was their only option. Explaining this got them nowhere; they were labeled good for nothing drunks or junkies, with a racial epithet or two thrown in for good measure. History has been way too kind to the people who didn’t believe African Americans due to racial prejudice and pure nastiness. Here are some sites with only the scientifically factual information about the disease itself and the history of its discovery and treatment. http://www.nhlbi.nih.gov/health/dci/Diseases/Sca/SCA_WhatIs.html and http://www.history.com/encyclopedia.do?articleId=222315.

For years, people believed chronic fatigue syndrome, or myalgic encephalitis (ME) as it is known in the UK, Canada, and Australia, was not real, despite a history of the syndrome going back at least 120 years. The same is true of fibromyalgia, which has been called different names in the past as well. Right now, the similarity of the symptoms for both has many believing they are one and the same. Those who present with pain as their primary initial symptoms will swear they had fibromyalgia only for years, even if they are now diagnosed with CFS as well. And those whose primary symptoms were fatigue with non-restorative sleep and post-exertional malaise with slowed recovery times, will claim they had only CFS first even if they are now diagnosed with fibromyalgia as well. There are different diagnostic criteria in the US for both, and the sufferers in the UK and Canada are fighting to have the two ailments rolled into one diagnosis of myalgic encephalitis. ME has been shown, on autopsy, to have changes to the spinal cord and in some cases, the brain that are consistent with symptoms of both. And both CFS and fibro list pain and fatigue as symptoms – just in reverse order. The fact remains, however, that for over 100 years, both diseases were considered imaginary, and many healthcare providers still believe they are, even in the face of mounting evidence of their reality.

Bucking the trend in the medical field is indeed dangerous ground in the opinions of way too many physicians (see Part II).

And it might just be me, but it seems that when young people get ME/CFS, they get it much worse and the progression is more rapid. Kids in the US, where the diagnosis is differentiated into CFS or fibromyalgia, are diagnosed with one or the other, but seem not to have as bad a case. Still, it is more devastating in young people, some of whom never see a remission. It gets so bad for some that eating a meal, seeing even soft light, hearing even soft sounds, and feeling even the gentlest touch, are all agonizingly painful and/or exhausting. Denying treatment has killed one young lady, as seen on this YouTube video http://www.youtube.com/watch?v=0Y_T5ylWUv4. (Be aware that in the UK, “being sectioned” is the same as involuntary commission to a mental hospital). So for this young lady, her “not real” invisible illness resulted in a very real death, and she is the first person in the UK who has ME listed as the cause of death on her death certificate.

So, my question is: What happened to all those people who advocate for kids?Come ON, there are kids are suffering and dying from ME/CFS and fibromyalgia. Who can believe, seriously, that a bunch of kids, who love to run and play and likely get teased and ostracized when they can’t, are lying about their fatigue and/or pain? That they enjoy having other kids make fun of them, enjoy being so tired and sore that they are absent often, possibly getting poor grades and enjoy being in trouble with the adults in their lives? If you’re looking at obesity and thinking that obese kids are looking for excuses to be inactive – for one thing, not all of these kids are obese or even overweight. For another, kids with ME/CFS or fibro often don’t feel up to recreational activities, either – including watching TV and playing video games, or chatting/email online. Kids, who don’t feel up to playing video games, IM’ing, or playing around on a computer, are somehow faking illness? What kid do YOU know who fits those categories? Why would any child in their right mind pick up some adult chronic illness that no one believes is real, and pretend to get sick with it, when they know they will be believed even less than the adults?

So, if we can establish that the kids have little or nothing to gain by “pretending” to be sick, why would they bother? Oh, obviously, it must be parents who are so possessive they want to keep the kids sick and dependent on them. What? Have to support their kids the rest of their lives? Take care of them as their health declines? Work extra jobs to be able to afford their care? Outlive them?

So, just like we let African American parents watch their children suffer and die without treatment for a known ailment, we’re going to let history repeat itself with kids and parents of every race and ethnicity, and watch as a second generation of people with ME/CFS that is worse than the previous generations’ cases, suffers and dies without help?

How does repeating this history help?

Currently, there is a private institution doing privately funded research into CFS. I don’t want to call it ME/CFS just yet; in the US, it’s called CFS, a more generic term that can encompass more conditions – and, according to our UK friends, waters down the definition, making it less likely to be taken seriously. This center communicates with 5 other centers worldwide, also private, doing the same research. The center in Nevada has sent specimens from patients, and received them from others worldwide, labeled with neutral identifiers. Research results on the specimens is compared by all centers and has so far come up with promising avenues for researching diagnostic tests and possible treatments – hopefully eventually a cure. That wouldn’t be possible if CFS was just an imaginary illness. Research into fibromyalgia has led to the FDA allowing the use of two medications for treatment – again, not possible for something imaginary. But just as it took decades for physicians to accept, universally, that sickle cell anemia is real, it may easily take a long time for all physicians to accept ME/CFS and  fibromyalgia as real.

But while there is promising research, we have to be careful of quacks who’d love to have our money while stealing real hope from us in the form of failed therapies – therapies that will fail because they are not real in the first place. They may help a few people – those who really did not have the disease in the first place, or in rare instances, had it from an imbalance that ended up corrected, by some coincidence, by a bunch of obscure herbs and a weird diet, or whatever they were selling. Legitimate medical research is the best way to go. I won’t ever rule out obscure herbs and weird diets completely; they can probably help with regular medical therapy in many cases. I don’t believe the medical community can rule them out, either, and I applaud that many more natural treatments used in other cultures are being explored to see if some part of them might work. But the answer to the problem of ME/CFS and fibromyalgia is a collaborative approach to research into diagnosis and treatment, researching all possibilities.

First of all, dear readers, I must apologize. Being both new to blogging and having several invisible illnesses that are currently taking quite a toll on me in flare ups, I had posted this, then gone about posting the 2nd part the wrong way – erasing this post, which I had completed and have to rebuild. Having brain fog is not a good thing!

So, for those of you who might be stopping by because someone sent you a link to a site about invisible illnesses, and you would like to know what in the world they’re talking about, you’re right: Invisible illnesses are not discernable by looking at someone. And the main way people find out that someone else has an invisible illness is when they are disgusted or put off by someone’s seeming reticence at a gathering, and you make a comment to a mutual acquaintance: “What’s wrong with her?” (I use “her” because 90% of invisible illness sufferers are female). And your acquaintance might say, “Well, she’s not feeling well. She has (whatever the illness is) and she thought she’d be OK to come, but her medications aren’t holding and she’s feeling badly. She’ll probably be OK if she can just rest.” Your first comment is likely to be, “But she doesn’t look sick!” Hence, invisible illness.

One question often comes up in the II community: Would you rather have your illness be visible? Believe it or not, may would rather they stay invisible. Face it, we’re all a little vain. Me, I wish there was some way to make it visible only in certain circumstances – like, oh, going to see the doctor when you feel really terrible? Other than those times, and the times when someone gets nasty about it, I guess I don’t really care. And when I say sometimes I’d like it to be visible, it doesn’t have anything to do with taking on the sick role. It’s a matter of wanting to be believed. I don’t want you to wait on me or treat me like I’m made out of fine porcelain. I’ll let you know if there’s something you want to do and I need to bow out.

That term, “taking on a sick role,” is a nursing term for those people who suck the life out of you because they’re sick. You aren’t (or don’t appear to be), ill; they are. Therefore, you must be punished for your health (or appearance of same). They have endless demands, and nothing ever suits them. You end up torn between guilt and the desire to put them out of your misery. And besides, they’re travel agents for guilt trips. Unfortunately, even the most stoic II sufferer can get this way from time to time. But most of us don’t spend all our time like that, and if you’re a good friend and you see us doing this, most of us want you to call us on it.

Remember me stating how many II sufferers are female? My grandmother used to say she didn’t know what doctors would do without a female’s reproductive cycle because they blame everything on that for your entire life. That’s still true today, athough they cloak things in politically correct language. But instead of saying that directly, they hint that there’s just something about women’s physiology that makes their illnesses seem a lot worse than they really are, or that makes ordinary complaints seem intolerable. It must, of course, be stress, so you’re sent packing off to the nearest mental health professional – who may not agree with the diagnosis, but unless they take you through a few sessions, they can’t know for sure. And, everyone knows reducing stress helps you to cope with the problem. Plus, the only way they can prove that you’re not bonkers is to have enough sessions to prove, at least semiconclusively, that you’re just find and dandy in the mental health department. So it all works out in the end, right?

Well, not always. A lot of that depends on where you live. Contrary to what the mental health professional groups would like you to believe – and how they’d like the world to act – there is a lot of discrimination out there. For a lot of people with invisible illnesses, this creates a huge problem. Many insurers, especially Medicaid, Medicare, and Tricare, under which many II sufferers receive care, make continued care contingent on compliance with cognitive behavioral therapy – aka counseling – not because their illness is all in their heads, but to make sure they have adequate coping skills, as part of a comprehensive treatment plan. Some HMOs require the same. But if the II sufferer goes into remission and tries for a job – they have to risk their bosses finding out somehow after they’ve been hired without disclosing, or disclose and risk being turned down for a job they’re more than able to perform.

With the obesity epidemic, we now have another source of blame – you either weigh too much, too little, have dieted too long, are eating wrong, have done too much “yo-yo” dieting, not enough exercising – in fact, I defy you to find one illness that isn’t blamed on obesity in an overweight person, even if thin people have it as well. I’m not really sure how that works out, but apparently if fat people become thin, they never again are ill in their entire lives. And if smokers just stop, they will never again be ill, either.

Hmmm. Maybe if we make everyone either get fat or smoke, then get thin or quit smoking, everyone will be healthy? If you follow what doctors tell fat people and smokers to its logical conclusion – that fat and smoking are the cause of all illnesses and if you lose weight or stop smoking you will never be ill – then the way to cure all diseases is to make everyone choose one of those habits for a while, then stop it.

Ridiculous, huh?

So, being that invisible illnesses are mostly found in females, let me ask a question: What do you think happens to a guy who gets an invisible illness? If you guessed that the men around him give him a genuine Sissy Certificate, signed in testosterone that they believe the sick man lacks, you’re on the money. Even many women are at least surprised to find males who have invisible illnesses, although they are more accepting than males of the phenomenon.

The phenomenon of welcoming males with II into the fellowship with the girls, though, rests in the faulty assumption that if enough males have II, then physicians will legitimize what they have and find a cure – or at least some way to treat it. Or if nothing else, encourage more research. Women often quip that if males had what they have, there’d be a cure, because men are generally believed when they say they are sick. But that’s not always true.

There are invisible illnesses that are recognized as “legitimate” – lupus is one, rheumatoid arthritis is another. Damage only becomes visible with time, sometimes not even then. And there are diseases like chronic fatigue syndrome and fibromyalgia that I’d estimate roughly half of all physicians either outright believe is imaginary, or who have serious doubts as to how legitimate these diseases are. It’s difficult enough dealing with an auto immune and/or chronic invisible illness that puts you in pain all the time – it’s really bad when no one believes you.

Chronic illnesses are all around us. In the US, it’s estimated that up to 53% of the population has at least one chronic illness, and many of those are II. Many people have multiple chronic conditions. If you want to see the impact of the volume of chronic illness in general, just think of how many people in your workplace, church, neighborhood, etc., have asthma, COPD , CHF, Hashimoto’s (low) or Grave’s (high) thyroid disease, and/or diabetes, just for starters.

In Part II, which is a lot longer due to the amount of subject matter that needed to be contained in one article, we’ll go into some reasons why doctors don’t believe some II are real, or why they stay quiet if they do.

Many invisible illnesses are given credence by very few doctors initially. The number who accept it grows as their personal experience, with research, starts to give credence to the disease as real.

Research into illnesses like these, comes at the hands of physicians who have risked investigation of a medically declared “non-disease,” in hopes of a way to diagnose, treat, perhaps cure the disease. Sometimes, they research in an effort to disprove the illness is real, and then change their opinion when they discover disturbing evidence that they were wrong. It is often as they continue trying to prove the false nature of a disease, that they actually define and legitimize it – whether they intended to do so or not.

We all want the fantasy medical ethics we see on TV, where doctors risk all to help patients. And since we have no idea how much of a risk they’d actually be taken – since they all end up vindicated heroes at the end of one to three hours of the show – we believe we’re entitled to it. Remember, movies and TV are fantasy, and no one in Hollywood has a good sense of medical history, nor do they want one unless they think they can exaggerate it and make TV that sells.

The tendency to blame an unknown illness on a patient isn’t news to most people who’ve dealt with doctors while trying to get care for mysterious symptoms. Give a doctor a patient with an illness that presents with no abnormal lab, procedural, or imaging results, and most of them aren’t going to think, “This person looks like they’re really having problems, and, well, you know, maybe we just don’t know how to test for this, or maybe none of the current tests we have can measure it, so we’ll have to find one.” If they do, they stifle it. What they do instead, is blame the patient and call them lazy hypochondriacs. The very thing for which so many entered medical school – to help people, perhaps even make a new discovery about diseases, their cause, and possibly even cures (or at least some way to alleviate the symptoms) seems to be forgotten.

Dr. Semmelweis was a physician in the mid-1800s who observed that the extremely high morbidity and mortailty of the wealthy mothers who delivered at his hospital (and their babies), compared poorly with that of the neighboring hospital for poor women, who did not get sick and die as often. The wealthy women were attended by physicians who went from one patient to another and from autopsies to birth without washing their hands or changing blood-encrusted lab coats (a symbol of prestige). The poor women were attended by nurses and midwives. In those days, both types of caregivers were considered “loose women” of questionable morals, suitable only for caring for the poor. Yet, these women had an enviable maternal morbidity and mortality rate compared to the hospital for wealthy women. Dr. Semmelweis started observing and asking questions. The secret appeared to be the “low class” nurses and midwives insisted that their employees be personally clean, wear clean uniforms, and change the sleeve covers and aprons they wore if they became soiled. Patients were bathed. Clean linens were always used. Caregivers washed hands between patients. Dr. Semmelweiss performed a limited experiment with one group of physicians – young interns under his supervision. Hemade them change lab coats, and wash hands, between patients, and especially before childbirth. The morbidity and mortality rate dived. Encouraged, he took the information to the hospital’s supervising physician, who agreed to at least expand the experiment to see if the results would hold. Doctors resented him saying they could not wear the blood (and pathogen) encrusted lab coats when doing patient care; their prestige, they said, would be lowered and the hospital would suffer. Dr. Semmelweis was, after all, following the advice of women, whom everyone knew to be intellectually inferior – and loose women, to boot! But under Dr. Semmelweis’s care, the hospital’s morbidity and mortality was not just lowered – it was the lowest rate in Europe. That, it seems, would be something of which these physicians could be proud. After all, doing research, they had saved lives; they had found that answer for which the autopsies were done: What is the cause of childbed fever? Most of it was autopsying infected women, then going to a birth with the same dirty hands and blood encrusted lab coat full of pathogens.

But they were NOT proud. They were ashamed, and soon convinced the next physician in charge of the hospital, to fire Semmelweiss for making doctors act like the loose women in the hospital for poor women. The new supervising physician, sympathetic to doctors who did not want to look like, well, “sissies” would be the modern equivalent, stopped the practices that had saved so many lives and started, essentially, killing women again.

You’d think that Dr. Semmelweis, having done such a remarkable job of saving lives, would survive any blacklisting by the physicians at the maternity hospital and, based on proven records of an upwardly spiraling death rate among the wealthy female population of the hospital from which he’d been tossed out, would bring him countless offers to reduce the mortality rate in other hospitals in the area.

You’d be wrong. Dr. Semmelweis was blacklisted, and died impoverished, blacklisted by physicians all over Europe for investigative methods that were used commonly in other disciplines at the time. And, due to the way he was treated, there is even an organization today that is named for him, and attempts to help in the fight to clear the name of physicians falsely accused – proving there is some hope out there! If you’d like to check, go to http://www.semmelweis.org/. And if you’d like to check out the Wikipedia account for more details, go to http://en.wikipedia.org/wiki/Ignaz_Semmelweis.

This serves to educate us to one thing that has changed little from the time of Dr Semmelweis – blacklisting by established physicians who are in some way threatened by your findings is a death knell to your career. One sure way to draw their ire (and their fire) is to claim a disease is real when it is not, or to challenge a current accepted practice (especially one that makes doctors look important and powerful).

Back in Semmelweis’s day, most medical schooling was a sort of apprenticeship. You got a 4 year degree, then passed an exam to show you knew what you were doing in school. Then a doctor took you into his practice, or you were hired to work in a hospital under a doctor’s auspices. You attained a level of competency that the mentor considered adequate for private practice. Show any deviation at all from what your mentor wanted, even if he was wrong and you disagreed on very valid evidence, and you would not be recommended for independent practice.

Now, medical school is 4 years of college after the 4 year baccalaureate premed degree. That’s more than the credits required for a master’s degree. In fact, it comes very close to what’s expected for a PhD – probably how they get the title “doctor,” a common honorific of successful PhD candidates. And why their degree is called “Doctor of Medicine.” They still have an apprenticeship, too – around 4 years in most hospitals, the initial internship and 3 levels of residency. Most people know college is expensive – trust me, post graduate education is easily twice the cost of undergraduate education. Most families are not wealthy enough to put a child through all the college required for the MD degree. That means scholarships, loans, and grants have to be applied for and won. Loans will be huge. And during internship/residency, most physicians are paid less than the hospital’s RNs, and are given such heavy loads that, in the past before the limitation on the number of hours they could be worked, the main job of nurses in teaching hospitals was teaching interns (within limits)  how to do their jobs properly, and stopping them from killing someone with a poorly thought out order conceived by an overly tired physician.

A general practitioner will stop after the residency, and at age 30, still likely paying student loans, will have to take on the considerable expense of buying a practice, or will have to request to be hired by a group practice into which they can eventually buy. The opinions of this group practice will govern this physician’s practice of medicine; if not, he will be fired as an incompetent. NOT something you want on your resume! Not only must he/she be careful about what types of patients he/she accepts, he/she must be careful if others find out he/she is seriously treating people with illnesses the rest claim do not exist.

Think of the typical doctors’ office. It’s near an imaging place and a lab place, possibly even a PT place, because Americans demand that level of convenience (one big reason I believe Americans are too spoiled for socialized medicine). Now, if you owned a building where all these things were close by, or in the building, what kinds of rents could you charge? Got the picture? Now, imagine the cost of things like office furniture, computers, desks, lab tables, chairs, common first aid supplies, defibrillators, filing systems, and HIPAA business agreements to provide services for patients who want to go to an affiliate. Now, add in the nurses, medical assistants, coding specialist, billing personnel, and medical records personnel. Top that off with the computer systems you have to have to submit bills. And we haven’t even touched retaining a lawyer to advise and if necessary, defend you in court.

Quite a tally, isn’t it? And if you document care online, your computer system’s cost just went high as a kite.

Now, what did we say happens when a physician bucks his colleagues on a point of illness? So, if you worked for the doctor and this was the only job you could manage in your situation, would you want this doctor to go off challenging the Medical Establishment over some illness? Wouldn’t you say, “Let the government researchers handle this one. Help the people you can help, and do it quietly. Don’t risk losing your practice.” And, you’d be adding, my job and the employment of everyone else here.

And what sort of impact would this have on patients the doctor wanted to serve, if he got blackballed for bucking the Medical Establishment? They, too, would suffer if the doctor didn’t quietly take care of patients with diseases the doctor is as sure are real, as the Medical Establishment is convinced they are not. Plus, the doctor usually has a family, right? If he/she goes bankrupt, what happens to the spouse? The kids?

Now, factor in slow pay/no pay, the practice I believe was initiated by Tricare and Medicare/Medicaid and moved rapidly to the private sector – don’t pay the claim for 3 – 12 months, maybe longer. Would YOU like it if your paycheck was withheld for that long for your job, and you had to live off meager earnings until the insurance payments  leveled out and the income stream stabilized? And would you like to fight a denial of your paycheck by a bureaucrat with maybe a GED – who hasn’t really got a clue what’s involved in patient care – so the insurer can save money?

And would you like it if these same insurers, while paying bonuses to people who deny claims as “prevention of fraud and abuse,” cut what you were allowed to charge, while your expenses continued to rise? All in the name of preventing medical waste, fraud, and abuse! Urged on by what Medicare/Medicaid get away with, private insurers quickly follow suit.

Next time you want to know why doctors always play it safe, remember, as they do, the example of Dr. Semmelweis and others like him in the medical past. Blazing a new trail is a very risky idea, especially for a new doctor.

Here’s another tidbit for those of you who see an internal medicine specialist and believe he or she is about the same as a primary care physician: if you decided to become an internal medicine specialist, you’d have spent 4 more years as a fellow, working with other specialists, before being accorded the right to independent practice – and start out at age 34! Specialists charge more because they have more indebtedness to pay, but more importantly, because they have more expertise. They have even less to gain by bucking established medical trends.

In the face of all this, what’s a person whose Invisible Illness is not always recognized as “real” or “valid,” supposed to do to obtain care? We might start by supporting physician practice, by demanding that physicans who claim a “breakthrough” treatment for any illness have their research scrutinized PRIOR to either selling it, or having it debunked it as quackery, to determine whether or not it’s valid. If it is, continue the research; if not, then debunk the doctor and his/her claims, or demand they provide legitimate research content to back up their claim. After all, when doing this, the medical community is only attempting to protect us from quacks, who always claim that they have a “miracle discovery” that is “not accepted by the Medical Establishment” who are “out to get them” and “deny people the benefits of their research.” But in case the claim is true, and might actually help people, let’s look into it more.

I have fought more than my share of physicians, as a family member, a patient, and a nurse. But I was calling them on behaviors like assuming an elderly person was senile when they were not, assuming deafness was synonymous with stupidity, or denying needed care to an elder from not caring or not believing they’d get reimbursed. I fought them when they refused to take care of patients no matter what their needs, based often on their income or an addiction. I have fought my share of tired MDs who were going to kill a patient by adding a questionable medication to the patient’s list – and had help from pharmacy.  And I’ve fought them for a diagnosis of my pain and fatigue – and for treatment of same. But I have always realized they have a lot of expenses, frustrations, demands on their time, etc. I even wonder if the Joint Commission’s expanded Patient Safety Goals and the documentation they require are not now doing more ham than good.

Everyone wants the benefit of the doubt – we who have invisible illnesses, especially those that are still debunked by many physicians, may have to take the initiative, despite our discomfort and sometimes desperation, to consider what the physician has to deal with if he/she agrees your illness is valid when many others don’t. Approach them with consideration, but advocate for yourself as well. Keep a thorough log, but try not to sound whiny, even if you hurt. Tell them up front that you are in a lot of discomfort, and apologize in advance for any misunderstandings that might arise. Then tell them your concerns, suspicions, information, any tests or procedures, symptoms, signs, and ask for their help. Request that they keep an open mind and treat you with consideration. You might not get anywhere – but then again, a little consideration for the physician’s dilemma might get them to help you where other attempts have failed.

At no place was my infamous klutzdom more obvious as a kid than when I got to go on a ski trip with my friend’s family. I was sure I could manage. Had I not finally mastered roller skating? Was I not able to ice skate? This was prior to the horseback riding debacle, but I had also taken judo lessons; had I not made one belt promotion against all odds, when everyone was betting against me? I was on a ROLL! I could DO this thing! I was PUMPED.

I was MONUMENTALLY STUPID & IGNORANT of the basics of attempting to put on cement shoes, clamping on waxed bedslats, getting up a hill on a rope, and trying to get back down again without any Close Encounters of the Fir Kind.

It took 5 tries to get a pair of rental ski boots that fit me. And I was – and am – still not convinced that these cement overshoes are a necessary component of the Ski Experience. They’d be great for stomping on cockroaches, even mice, possibly even river rats, but they’re a bit much for clamping to what seems to be a fairly flimsy set of wooden or fiberglass skis that have to be taller than you are. So finally, convinced that (a) nothing is really going to fit, and, (b) they are all going to weigh 50 lb. at least, I settle for what seems to be the least uncomfortable set and go for the bed slats. Sometimes, being fat comes in handy. I already felt glued to the floor and I had some serious ballast. Skinny people, I decided, must have incredibly strong legs or some sort of antigravity device. Or maybe they only make fat people wear the heavy ones, hoping they’ll lose weight before gravity and momentum have them barreling down a slope, punching a fat body shaped hole in 2 walls as they pass through the ski lodge. All I know is the danged things  are heavy.

I discovered one good thing about those boots: they add about half a foot to your height. But it still didn’t slim me out, and getting on a scale with those shoes would have given the scale springs a real run for their money no matter who had them on. Oh, well. On to the waxed bed slats.

These turned out to be very narrow. I was expecting about 5, maybe 6 inches across. I got 3, maybe 4 inches. They also had to be about 6 feet high with me at my height, so they looked less and less like bed slats and more and more like popsicle sticks on steroids. I was handed these dubious items, which also turned out to be rather thin (I was expecting about 2 inches thick, not maybe 3/4″ tops). I headed outside with them and the poles, so that my friend could teach me the basics.

We put on the skis. Or rather, she put her skis on and tried to help me learn how to put mine on. This process took a while; it required that vital skill I am so obviously and blatantly missing in my life, to whit, coordination. After a few lessons and a lot of trial and error, I learned to put them on and take them off. OK, one big hurdle, now what?

Now, we learn how to stop.

What, these things don’t have brakes??? They have got to be kidding me.

My friend assures me that if I just cross the tips in front, the skis will slow me down to a gradual stop. So we practice this maneuver of crossing the skis to her satisfaction – and in my stupidity, I never think about practicing actually stopping.This is going to have some serious consequences down the road.

So, you might be thinking, why not take skiing lessons? (1) They’re too expensive (2) I am never again going to be able to afford to go skiing – it’s expensive; this was a one shot “for the experience” deal (3) My friend knows how and she will help me figure it out, it’s not that hard. Now, the worst part of this is item 3. I know that I’m physically uncoordinated, the bane of gym teachers everywhere, laughing stock of athletically gifted people in any area. What in Heaven’s name made me think I could wing it? The fact I’d “winged” ice skating, learning it in only 3 sessions instead of several years? Talk about being a blooming optimist!

OK, so, now to get to the top of the Beginner’s Slope. This slope does not rate one of those scary chair lifts that you have to jump off to get on the slope. It’s a nice, calm, rope. Big, thick, easy to hang on to. Yeah. Riiiight….It is, in fact, a rope with a knot that I didn’t know about until way too late, and it’s slippery. That is, very hard to get a grip on. And, you have to hold your body just so, hold the rope just so, keep the right distance – and apparently, watch out for the knot (this last item was not disclosed to me quite in time). So…I stand “just so,” grab the rope “just so,” and promptly lose my grip. People behind me have to slide back, because my fat behind is sliding back toward them. I grip more and more tightly. I am finally mostly going up, and then my friend yells back at me, “Watch out for the knot!” I yell back, “What?” She repeats it. I yell back, “WHAT knot?” at which point, the blazingly obvious happens – it comes up behind my arm, which is now tightly gripped around the slippery rope, attempting NOT to have my behind slide into someone’s face.

This is one HUGE knot, easily triple the diameter of the rope. It promptly wedges in my armpit before I can disengage myself and flips me in a nice, 360 degree arc. I had finally managed to get about 2/3 of the way up the hill. Me, my overendowed body, my 6ft. long skis attached to my 50 lb ski boots, which makes an impressive load to flip, sailing in a circle. I promptly knocked down everyone behind me, just like a row of dominos. A very video moment,  but it was 1968, and kids weren’t entrusted with family movie cameras (and very few families had them; neither of ours did). Today, that would have gone “viral” in a few hours and probably would have won serious cash on one of those funniest video programs. But at the time, I was rapidly getting disgusted with the whole thing. It had to get better at some point, didn’t it? I could never catch the rope again; my hands were burning under the mittens. I took the skis off and trudged to the top of the hill, as nuns in full habit and 3 year olds skied joyfully down the hill, maneuvering with ease, nuns and preschoolers who’d gotten to the top with that same rope, without any problems. No knot problems. No sliding back. No midair spins.

Talk about depressing!

OK, we have proof positive; I’m coordination impaired. I ignored the warnings my friend called out to me about not taking the skis off to walk to the top. And when I got to the top, I found out why she was so insistent that I NOT walk up. All the little bits on the concrete overshoe things that attach to the bedslats, er, I mean skis, were filled with packed snow. Cleaning them out was going to be a nightmare. I ended up sitting down, getting both cleaned up and reattached at the top of the hill – and having to swallow my pride and ask my friend’s brother and his friend to help me stand on the things without sliding back onto my behind.

So now, I get to ski down the hill.

By now, I am learning a lot of caution. I am rapidly concluding that the ski rope, equipment, and such, are designed to detect and punish klutzy people who decide to attempt sports for which they have no aptitude, so they were dishing out several doses of punishment for a klutz who’d failed as many sports as I’ve failed. I try going a few feet down the hill, cross the tips of my skis to practice stopping….and keep going, with snow flying up into my face from what has now become a miniature snowplow. A couple of advanced skiers helping their kids learn stop to snag me and halt my fruitless braking attempt. They inform me that the real way to stop is to keep my skis parallel and turn them to the side at about a 45 degree angle by turning my body. I practice; it doesn’t seem too hard, so I go a couple feet more and try stopping again. Snow is now flying up on my side; I have changed speed but not by decelerating – I am accelerating and unable to figure out how to stop trying to stop. I finally stop near the bottom of the hill by grabbing a tree, which I spin around one time. Elapsed time: over 3 hours.

I decide to call it quits. There’s something about taking an hour to get boots, skis, poles, learn how to put them on and how to make them stop (supposedly), and then taking 3 more hours to get up and down the beginner’s slope once, that makes you reconsider the entire idea (providing you have the energy to reconsider anything!).

The rental section refuses to take the skis and boots until the end of the day, which means you don’t have shoes, you have concrete overshoes all day. They claim I’ll want to try again. I ask if I can swap ski gear for a snowmobile (they were a new invention at the time), and gave the staff some entertainment -  you almost had to buy the thing to use it for an hour, I wasn’t old enough, but hey, I had a far better chance with that thing…maybe…so I spend the rest of the day watching people ski, wondering why they do it/what they see in it, and finally I’m permitted to turn in the ski paraphernalia, and we go home.

After, that is, I nearly fall several times because I’m stepping too high since I’m used to 50 lb cement overshoes  that attach to waxed bedslats. Klutz strikes again!

I also wonder about something else…why did I have trouble? From the time I was 7 I could stand on a Flexible Flyer sled and go down a snowy/slushy/icy hill for around 3 – 5 city blocks or more with hills at a 45 degree angle and not fall, so how is it that skiing was not my thing? Maybe it was the cement overshoes, or the long waxed bed slats of skis, but it didn’t work for me. Considering that since the invention of the snowboard, ski resorts have added options like snowboarding and tubing, I just wish we’d invented snowboarding as it is today, a little earlier, and earned the money for the invention so we could use those, not ski. I don’t know of too many kids in the little town where I grew up who didn’t “surf” a sled down the steep hills. I guess we just didn’t see any need for different equipment at the time, since the sleds worked (of course, fiberglass snow “saucers” weren’t invented until I was about 8, and they didn’t surf; they spun; so to us, they were kinda useless). Surfing any sled down a hill would’ve beat the heck out of the skiing.