Political Rant: Fear Mongering

I have to speak up. The fear mongering in this country is out of control. The Paris Attacks didn't even happen on our soil, and yet we are talking about slamming the door on people in need out of fear of what might happen. We are ignoring the plight of people fleeing brutality and war in an attempt to firewall ourselves off from terrorisism, when we the terrorism in this case was HOMEGROWN. Have we forgotten Waco, Texas that quickily? Or what about Sandyhook, Connecticut? This is the same stupid fearmongering that has us more worried about the ONE addict, when ther are over 100 people suffering in chronic pain PER ADDICT. The unsubstantiated boogyman under our bed frightens us more than the very REAL problem of suffering we see every day. We do nothing sensible about the real problems, and we lose our head over spooky possibilities. And it's destroying this country.

Most people get behind the wheel of a car every day, multiple times a day, never thinking that we are operating a deadly weapon. We require no background checks for these weapons, no psychological exams. We advertize their sale on TV. Nobody thinks twice about it. Yet a car can kill you just as dead as a gun. We tell people who are bullied to speak out, never thinking, "Hey... What happens when there's no grown-up around?" As someone who was bullied as a child, I'll tell you what happens: you get it twice as bad after you've informed a teacher than if you kept your mouth shut. And the bullies at school weren't nearly as bad as the bullies I had to face in my own family every summer break. School was a vacation from violence for me.

Now I'm living in a country I don't recognize. I read about this type of country in school, and the book was 1984. Big Brother is alive and well in Trapwire, in the local traffic and people cameras, and even in the fat-shaming on the TV, even though any look at the numbers will tell us there are more unhealthy skinny people than there are unhealthy fat people (thank you, Science Friday on NPR). We are punishing people for stupid reasons, all to attain some dreamlike society where no one does any wrong, ever. AND IT'S JUST NOT POSSIBLE.

Our politicians and police keep saying, "We need more power to keep you safe!" Can you keep me safe from my own body? Can you keep me safe from the arrogance of a respected surgeon who let me wake up on the operating table and infected me with MRSA? Because those are the things that have nearly killed me. Can you keep my uncle safe from the cholesterol drug that paralyzed him? I still see the ads for it on TV...

LIFE IS DANGEROUS! We all die of something. And we are letting our fears cripple our lives. This must stop. But as a good scholar of history I know that we will make stupid decisions like locking up Japanese-Americans just because we know who they are and ignoring all the German-Americans because they're white and European looking. We wanted to shut out German-Jews because we feared the saboteurs that might try and sneek in amongst their ranks! How many more died in the Holocaust over our fears?

There is a new holocaust going on. The Kurds have already found the mass graves full of women and children. Yet we'd rather believe the monsters are made over there than admit that they live amongst us right now. We'd rather let hundreds of millions of pain patients suffer and live in torture then deal with the minascule few who use drugs to escape from emotional pain, despite the fact that 50% grow out of their addiction with no intervention whatsoever,, according to the DEA.

Politicians talk big, saying they will keep us safe. But when have you actually seen a mass-murderer stopped before a shot was fired or a bomb exploded? NEVER. We were only able to pacify the Germans and Japanese through occupying those countries for FIFTY YEARS. It takes a generation or two to change people's warmongering ways, but we've lost the stomach for that, wanting quick solutions and fast results. We focus on the small problems like terrorism forgetting that two hurricanes (Katrina and Sandy) did more damage and cost more in economics, and human lives lost and disrupted, than their suicide bombings could ever do.

We are insane in this country. It needs to stop. Reasonable voices and facts are being drowned out by fear and hate. We ignore pain and suffering, then pat ourselves on the back for a job well done. It shames me that we speak of freedom and liberty. We are such liars. This is not the United States of America I was taught about in school. I don't know where She is. We need to return to Her, and I don't know how.

Together, we might be able to. But it's going to take courage-- courage that I don't know we have-- to start doing right again. God(s) help us.

Judging a Cover

Doctors fancy themselves judges. Any lawyer would laugh at that, but patients know the truth. Even the most well-intentioned doctor is judge, jury, and sadly far too often, executioners. I can't tell you how many times I almost died due to the neglegence of a doctor. There was the original dismissal of my symptoms of adrenal insufficiency including a full-blown Adrenal Crisis the night before my colonoscopy. There were the cries of, "You're so young!" and "You look so good!" Now my problem is I live in a conservative town, I look much younger than my 41 years, I have tattoos (last one so painful from my neuropathy I quit ink 7 years ago), and I've been on pain pills they just don't prescribe in the Middle West. Hence, I'm castigated as a junkie when I have no history of substance abuse.

What I do have is just enough chemical knowledge to make it seem like I'm a junkie. Doctors think they're the only people who can pronounce fancy names. They can't imagine that a professional writer, nay, a health writer could have a grasp on how to read. Do you remember in kindergarten when they taught you how to pronounce big words by breaking them up into smaller ones? Yeah, unless you have a medical degree you couldn't possibly know how to say dextromethorphan or trinitrotoluline (TNT for you folks at home).

And if you happen to talk fast, that couldn't possibly be because you're able to think fast. No one can think fast without drugs!! Well, I don't take drugs for my ADHD because speed can kill me with my adrenal insufficiency, and it makes my heart race at unsafe levels. I was diagnosed ADHD when I was 18. Took medication for three months, then had to quit. Oh, the ritilin did exactly what it was supposed to: for the first time I could remember more than three things at once. I would have stayed on it if I could. Instead I developed coping skills. Now I can out remember both my parents; dad''s been diagnosed ADHD since he was 45 and my mother takes the Adderall, also called dextroamphetamine.

Did you know oxygen is a drug? Yeah... A drug. The $#!+ we need to breathe and live is a prescription drug if you need a respirator, or if you get it in hospital. But go down to any hardware store and you can buy giant tanks of it, no prescription. It's used in acetyline torches. Did you know that we use sodium to light our streetlights? If your street lights are a nasty pale orange, that's a sodium light, the same stuff that ups your blood pressure. Did you know potasium can kill you if you inject it too quickly into a vein? It's an essential vitamin, but one good dose to the vein and you'll never need vitimins again. Did you know aspirin is made from coal tar? Or that most of our "synthetic" drugs (not really synthetic because coal and coal tar both come from plant matter) come from?

Oh but I'm just a patient... I couldn't actually know something. Having knowledge means I'm a threat. I know when doctos are trying to make $#!+ fly without wings, so I'm a threat. We can't have our almighty doctors threatened with the truth! That might lead to the ethical treatment of patients and having to admit when they've made a mistake!

The HORROR!!!

The System and Dr. Ruan

Growing up in a family of lawyers and politicians, you're raised to understand The System. What most people don't understand is that fiction is dramatic to be exciting and entertaining. The real world is a great deal different. The system takes power, nuance, and a lot of work on your time and your dime. Depending on where you are, the rules are always different, but there are always rules. Be a team player and you just might get somewhere. Screw up, and you'll find just how limiting the System can become. Not all cages have bars you can see. Doesn't mean you're not in a cage. Ask anyone whose lived in a ghetto, they know.

Patience, obedience, and manners are all a part of the dance. When you're not the authority, you better know how to relax and follow their lead. This is the same for police as it is for government bureaucrats as it is for doctors. The problem is, in a situations like that, even normal behavior can be painted as criminal shown in the "right" light. Not everyone knows what's normal and what's not, so if you start throwing big numbers around without any baseline for comparison, people assume it's impressive. Having a frame of reference is vital to know where things really stand.

"The numbers are pretty stunning. A 2012 article in the Annals of Family Medicine noted that the average primary-care physician has about 2,300 patients on his "panel"— that is, the total under his or her care. Worse, it said that each physician would have to "spend 21.7 hours per day to provide all recommended acute, chronic and preventive care for a panel of 2,500 patients." I'm not sure I'd want that doc seeing me at the end of that long a day at the office.

"According to a 2013 survey by the American Academy of Family Physicians, the average member of that group has 93.2 "patient encounters" each week — in an office, hospital or nursing home, on a house call or via an e-visit. That's about 19 patients per day. The family physicians said they spend 34.1 hours in direct patient care each week, or about 22 minutes per encounter, with 2,367 people under each physician's care."
— Washington Post - "How Many Patients Should Your Doctor See Each Day?" April 22, 2014

Now a little math. Multiply 2,000 by once per month visits and that's 24,000 visits per year. Why once a month? Because pain medications are only doled out in once-per-month written prescriptions. Multiply that by three years, and that's 72,000 prescriptions over three years.

So when the news tells me that a pain doctor has written an "alarming" 30,000 prescriptions over three years, and try to paint that as excessive, first I laugh at the lie, and then I get really upset at the System.

This whole case against Dr. Xiulu Ruan and her fellow doctors is a farce. Doctors are expected to be able to diagnose in three minutes, and sometimes less! Do you think a gunshot wound waits for thirty minues for the doctors to interview their patients? The appointment is a formality for the patient. Most doctors are much smarter and faster than that.

When you see that she's also writing far fewer prescriptions than any given general practitioner, then the DEA's stance that that this is a "bad doctor" is just laughable. What's not laughable, however is the truth. The DEA is tearing apart the livelyhood of two doctors, smearing their good names, destroying a tax-paying business, costing a mountain of legal fees, destroying the jobs the doctors entire support staff, and putting all their patients lives on hold and at risk.

"Why?" You ask.

Because drug dealers shoot back. Doctors don't. The burden of defense is on the doctors. That pumps a hell of a lot more money into the System than taxes. All those doctors' possessions have been seized (asset forfiture), and the System is not required to give it back, even if the doctors are found innocent. Where do you think those possessions end up? Oh, some of it gets inventoried, sure, but things disappear too.

Who watches the watchmen? Do you think a uniform magically makes someone invulnerable to human weakness? Why do you think transparency in the System is important? Because the System will happily eat you for breakfast. Limits on Government and the rest of the System protects us from their tyrrany.

Plus, people in the System are pre-approved to go to the press and spread half-truths all day long. They can pat themselves on the back for "catching the bad guys." They look like they're doing their job, when actually it's the doctor's job to report to the DEA and provide the evidence to the System that eventually is used against them. It's really easy to do your job when others are required to do it for you. The DEA has a sweet racket going on. They don't have to do anything except bust law-abiding citizens and all other pain doctors are now terrified to do their job and help patients. That's a win-win in their book.

Pain, left untreated or under-treated can easily grow into chronic pain^*, for reasons not fully understood at this time. Does the DEA care? Not a bit. To them, every patient is a junky and every doctor a dealer and hospitals are cartels. They can force their victims through laws and regulations to dig their own graves.



Welcome to reality.




*PubMed — Can J Anaesth. 2014 Feb;61(2):112-22. doi: 10.1007/s12630-013-0087-4. Epub 2013 Nov 26.
The transition from acute to chronic pain: understanding how different biological systems interact.
Mifflin KA1, Kerr BJ. Centre for Neuroscience, University of Alberta, Edmonton, AB, Canada.

The Realities of Patient Engagement

It's pretty simple: If you want people to be engaged in a process, make that process engaging. However, too often doctors believe that just because they have the right answers, that alone should be enough to make patients follow their instructions. This attitude was highlighted in a recent interview with Joseph Kvedar, MD head of the Center for Connected Care, regarding the creation of MHealth, a new patient app that won a $468,000 grant from the Robert Wood John Foundation.

"RWJF is giving Boston-based Partners $468,000 to develop an "engagement engine" that convinces consumers to not only use health and activity trackers, but to keep on using them long after the novelty has worn off¹."

When asked about his "biggest fear" with respect to the development of MHealth, Dr. Kvedar said:

"I hope that developers don't assume that what works in the consumer industries can just be applied to mobile health. In healthcare, we can't just "give people what they want." The challenge in healthcare is that, though we know what patients/consumers need to do to improve their health, most of them don’t want to hear about it²."

This sentiment, to me, is an extreme oversimplification of the problem of patient adherence. First, saying "most [patients] don't want to hear about what they need to do to stay healthy" is just bunk. All you have to do is look at the popularity of patient-lead websites and physician-lead websites and TV shows is enough to discredit the idea of "patient non-engagement." Also indicative of patient engagement is doctor appointment attendance rates:

Over 80% of US adults see their doctor at least once a year – the national average is 3 visits/year – double that for patients with a chronic condition. Now what is it about these statistics that “screams” unengaged? Why would so many people who are so “unengaged” spend so much time making and waiting for an appointment to do something they care so little about? They wouldn’t!³

And yet, physicians still encounter significant patient non-adherence.

Medication non-adherence is most simply defined as the number of doses not taken or taken incorrectly that jeopardizes the patient's therapeutic outcome⁴. NCPIE⁵ has noted that non-adherence can take a variety of forms, including not having a prescription filled, taking an incorrect dose, taking a medication at the wrong time, forgetting to take doses, or stopping therapy too soon. ...Medication non-adherence is a major public health problem that has been called an "invisible epidemic."^{6, 7} Non-adherence to pharmacotherapy has been reported to range from 13% to 93%, with an average rate of 40%⁸. The problem encompasses all ages and ethnic groups. It has been estimated that 43% of the general population, 55% of the elderly, and 54% of children and teenagers are non-adherent⁹. A host of individual characteristics also influence adherence, such as the patient's religion, health beliefs, social support system, and ethnicity.

So how can these things both be true? How can patients both be engaged with their health and be non-adherent towards plans that will improve their health? Why do doctors experience an average rate of 40% non-adherence across all ages and ethnic groups?

The answer is really quite simple: professionals don't consider patients' input. Just look at what the problem is called: "patient non-adherence." It's not called "doctor miscommunication" nor even "doctor-patient disconnect." No, the fault is placed entirely on patients, as there is (in doctors' minds) no legitimate reasons for patients to not follow given health directions. There is only one right answer: what the doctor recommends. And you're not supposed to "take it or leave it." Patients are just supposed to "take it," regardless of the instructions. If the therapy is too demanding, has too many side effects, is too expensive, or is too scary, that's the patients' problem.

In an environment such as this, when a doctor asks, "Did you do what you were supposed to do?" the only answer is "Yes," regardless of whether or not that is actually true. Answering "No," while honest, is only rife with unwanted repercussions. When given no way to option-out of a doctor's decision, of course patients will say they're complying while behaving otherwise in private. What other option do they have?

Doctors and health technicians need to consider that they're already working at a disadvantage, and that it is their responsibility, as the professionals, to meet patients half-way. "The beatings will continue until morale improves...", is not a model for compliance. Rather, professionals need to realize the fundamental truth that when decisions are very important and highly complex, it is easier to remain inactive than it is to take actions. This irrational behavior towards compliance is true for patients as well as doctors! A study by Redlemeier and Shafir showed that "the difficulty in deciding between... two medications led some physicians to recommend [neither]¹⁰." This shows that situations involving choice (and specifically whether or not to prescribe/take a medication) can paradoxically influence people to choose the status quo, even among physicians.

When prescribing a new medication, the average primary care physician spends less than 50 seconds teaching (too strong a word) patients about the medication, e.g. why they need it, how to take it, how much to take, when to take it, indications and contraindications, when to stop and what to do when you stop. That’s not much time for the physician to say everything that needs to be said (which doesn’t happen). Nor does it leave time for the patient to say much. Since most patients are reluctant to interrupt or contradict their clinician, many if not most of the concerns patients have about taking the new medications are never voiced. Rather, patients just go home and never fill the prescript¹¹.

If we want to address this problem, and more to the point, if we want patients to remain engaged with a health app and as a result, become more compliant, patients' concerns must be addressed. It is obviously simply not enough to just instruct. There must be the opportunity for dialogue and understanding on the part of physicians that this is not just a patient problem. Disagreement on the part of the patient should not be seen a challenge to the doctor's authority, rather, if compliance is the goal, doctors should invite patients to raise concerns. Even better would be for doctors to ask direct questions addressing the main reasons cited in the literature for non-compliance¹², namely:

Do you agree with the diagnosis necessitating the prescription?
Do you agree the diagnosis is serious enough to merit the doctor's suggested treatment?
Do you believe in the treatment (i.e., believe in taking medication, believe in physical therapy, etc.)?
Can you afford the doctor's recommendations?
Do you believe the benefits of the recommendations outweigh the risks associated with it?
Do you believe the recommendations will work?

And if we want to maintain patient compliance with an app "long after the novelty has worn off," we must look at the reasons for non-compliance at that juncture, and successful practices that keep patients engaged. Thankfully, this is a well-explored subject, and one such health app is already in existence: SuperBetter. SuperBetter is a tool created by game designers and backed by science¹³, designed to help build personal resilience. That is, the ability to stay strong, motivated and optimistic even in the face of difficult challenges. In other words, higher long-term patient compliance.

We can only hope Dr. Kvedar likes video games.


References
[1] Wicklund E. Partners looks to make patient engagement persistent. mHealthNews; March 24, 2015 Available at: www.mhealthnews.com/news/partners-looks-make-patient-engagement-persistent. Accessed April 7, 2015.

[2] Wicklund E. Joe Kvedar's quest to personalize health. mHealth; October 17, 2014 Available at: www.mhealthnews.com/news/mhealth-masters-joe-kvedars-quest-personalize-health. Accessed April 7, 2015.

[3] Wilkins S. Is trying to convince people to use health apps they don't want the right approach to patient engagement? Mind the Gap; October 24, 2014 Available at: Is trying to convinve people to use health apps they don't want the right approach to patient engagement? Accessed April 7, 2015.

[4] Smith DL. Patient Compliance: An Educational Mandate. McLean, Va: Norwich Eaton Pharmaceuticals, Inc. and Consumer Health Information Corp; 1989.

[5] National Council on Patient Information and Education (NCPIE). The Other Drug Problem: Statistics on Medicine Use and Compliance. Bethesda, Md; 1997 Available at: www.talkaboutrx.org/compliance.html#problem. Accessed May 8, 2000.

[6] Smith MC. Predicting and detecting noncompliance. In: Smith MC, Wertheimer AI, eds. Social and Behavioral Aspects of Pharmaceutical Care. New York, NY: Pharmaceutical Products Press, Inc; 1996.

[7] Fincham JE, Wertheimer AI. Using the health belief model to predict initial drug therapy defaulting. Soc Sci Med. 1985;20(1):101-5.

[8] Bond WS, Hussar DA. Detection methods and strategies for improving medication compliance. Am J Hosp Pharm. 1991;48:1978-88.

[9] Gladman J. Pharmacists paid to improve drug compliance, persistency. Payment Strategies Pharm Care. 1997; October:4-8.

[10] Redelmeier D., MD and Shafir E., PhD. Medical Decision Making in Situations that Offer Multiple Alternatives. JAMA. 1995;273:302-305.

[11] Wilkins S. Patient Non-Adherence (Like Engagement) Is a Physician-Patient Communication Challenge – Not a Health Information Technology Challenge. Mind the Gap; July 23, 2013 Available at: www.cfah.org/blog/2013/patient-non-adherence-like-engagement-is-a-physician-patient-communication-challenge-not-a-health-information-technology-challenge. Accessed April 7, 2015.

[12] Zolnierek, H. et al. Physician Communication and Patient Adherence to Treatment: A Meta-Analysis. Medical Care. 2009;47(8):826-834.

[13] McGonigal J. The science behind SuperBetter. www.superbetter.com. Accessed April 7, 2015.

So much, I don't know what to think!

First, I'd like to thank everyone who has been praying and sending their energy to me and my family. IT WORKED. My father has made a miraculous recovery: his paralysis is gone, he has a few remnants that will require therapy, but his prognosis is good. Beyond that, he has had what I can only describe as a "spiritual awakening" (aka, a "come to Jesus" moment). He told me, "I need to rethink everything!" And yeah, he does. But true to form, the day after he got out of the hospital, he went back to work! (He's self-employed, so mainly it was to let everyone know he was okay...). So, yeah... GREAT news.

And that's not all.

I went to my new endocrinologist and she was AMAZING. She reminded me of Doc Broyles, and she patiently took my story spending over 45 minutes just taking notes and getting my background. She not only believed me, she kept repeating "Your story is consistent, so..." which I can only interpret as, "I don't think your lying, so...". That was so reassuring. Then she apologized for my bad experience at Anschutz and told be that the doctor I encountered can get very defensive when challenged, so I was unknowingly setting her off! Plus, I was informed when she was proven wrong, that probably brought out the worst in her. However, she's apparently an excellent teacher. I was floored.

But wait! There's still more!

She took a thorough background of my estrogen levels and let me know that it should be possible for me to have children! She's willing to support me having a child even with as much trouble as I've had, even with my health risks!!! I went into orbit... the only thing that I know I've wanted to do and be is make a child from my body and be a mother. I had put that beautiful dream under a bell glass and stuck it on a shelf, like a butterfly pinned and put on display: beautiful but impossibly dead. But now... a child of my own...


It's so much, I don't know what to think! I try to, but then I'm just in awe of how amazing it all is. This magnificence is staggering...

So THANK YOU!!! To you, the stars above, and any divine assistance!

I'll try to update soon, but man it is hard to think! lol

Until then, thank you again.

"Placebo Effect" Causes Greater Harm than Good

A review by Psychology Research (@psychresearch) of 21 randomized trials shows that the "placebo effect" causes adverse side-effects in 45% of study participants. This is an absolutely fascinating result, because previous studies of the placebo effect show that a pill that has no medicinal value whatsoever causes participants to improve at a rate of only 35%. What this means is that taking a pill with no medicinal value whatsoever is more likely to cause Harmful effects at a greater rate than it provides a benefit. This could have a lot to do with medication non-compliance and aversion to doctors and hospitals. If nearly half of people report an adverse effect from just taking a pill, and only a little more than a third report a positive effect, then it's no wonder why most people are adverse to taking medication!

I've always though reports on the placebo effect were a bit silly, and now it makes sense why. Scientists and doctors were always delighted to point out that we stupid patients were dumb enough to be fooled by a sugar pill. Doctors took this as proof of their magical, majestic auras... That just the idea that what you were taking was a "medicine" was enough to make you better! The idea of a magic pill was so powerful, that the medicine didn't even have to be real. Patients would get better just because you told them to. How amazing is that!?!?!

Turns out, that was only part of the story, and not even the most important part.

In fact, the though of a medicine is so powerful that it actually HARMS patients at a rate of nearly half. Nearly HALF! That means that patients are so leery, so worried about what their doctor is doing to them, that they will experience an event that convinces them a sugar pill is damaging them.

This experience of harm at a greater rate than help actually fits with what we already know about the human brain. We experience loss at a rate of three times higher than gain. For example, if you insult your spouse once, it takes at least three compliments to make up for that one slight. Similarly, when frightened, we will assume that the noise in the grass is a tiger, rather than assuming it's the wind. Why? Because that's what helped us survive vicious predators as stone-aged cultures. In the past, it has been biologically advantageous to assume the worst. So our brains are hard-wired to do so.

So it makes perfect sense that patients would report rates of greater harm than good from a medication that does nothing. And doctors should realize that they are working at a disadvantage when patients are left to guess whether a medication is going to cause harm or good. The placebo effect is NOT some positive powerful force. The placebo effect is, in fact, a powerful NEGATIVE force, and one than can undermine the entire true effect of a medication! Studies prior to this have shown that chronic illness patients have a medication non-compliance rate of a third to one half, and now we know why. It makes perfect sense, and the myth of the positive placebo effect being the only force at play is totally BUSTED.

We also now have a new understanding of non-compliance. It isn't willfulness. It isn't a lack of willpower or an inability to form new habits (though these things can exacerbate the problem). What is really at work here is the fundamental nature of the human brain to avoid harm in situations where not all the variables are known. If this doesn't speak volumes for the need for thorough patient education, I don't know what does. Humans are survivors, and you don't survive by assuming everything is just fine when you know there's something going on that you can't see. Taking a medication is a RISK. So naturally, it is better to assume that the medication is more likely to harm than help when you don't know what it does.

This also speaks to the great divide between doctors and patients in our current medical system: doctors assume that their patients should just rely on their expertise. However doctors get so involved in science that they lose sight of common sense things and get lost in ego-boosting preliminary results, like the belief that the placebo effect resulted in automatically better results for a medication. I don't know how many years it's been pounded into my head, "well, you know, you'd feel better if this was a sugar pill, so I don't know why this real medication isn't working on you..." Well, doc, turns out it's because you were misled to believe just because you have M.D. After your name that means I view you as a Minor Deity. As things really are, M.D. implies Maybe Disaster and you terrify your patients, leaving you at a deficit the moment you show up.

If I could have one wish, it would be to educate the entire medical field about this. We need to wake up to the realities of how I humanely we've been treating patients by keeping them in the dark. We have been willfully inflicting patients to psychological damage as a result of our treatment of them, believing our medical professionals are supposed to be seen as intervening angels, when really they were seen as cloak-and-dagger devils. And as long as we were told that medicine worked a third of the time just because it was called medicine, the angelic myth persisted.

The fairy tale is over. It's time to wake up to reality.

Side Effects: Telling the Real from the Imagined - Wall Street Journal, July 7, 2014

Medical Bullies

I woke up today and I couldn't walk. It made me realize something. I'm being bullied. Despite my current apparent kidney health, I am not wrong that there's a fatigue issue going on, one that is clinical in nature. And I was never wrong about my symptoms that led to the diagnosis of Autoimmune Hypophysitis. What I'm experiencing here is a form of gas-lighting. They're telling me, "Yes, the results are abnormal, but we think the cause is the medication, not a disease..." Really? You think I was perfectly healthy, went on a medication, and now I'm sick as a result? Hold on here, that makes no sense.

I was first diagnosed by a Cardiologist in California who was looking for the exact *opposite* result in my bloodwork, because we were looking for causes of tachycardia. That was reaffirmed by an Endocrinologist who DID NOT believe I had what the Cardiologist found. My adrenal glands shut down in the presence of the stimulating hormone. I wasn't just low, my Adrenal Glands responded in a way that they should not. Additionally, he also didn't think my pituitary was involved, but agreed to test it because, and I quote, "I was wrong the first time!!"

I remember at first, I didn't want to be on prednisone, and voluntarily took myself off it for a month, but my endocrinologist showed the labs to me. She said you need to be on prednisone in no uncertain terms, and if not, you're risking your life. This was after all nerve blocks to try and control my migraines had ended, when I was receiving care in Everett Washington, before I had any pain relief from the headache clinic.

It was reaffirmed in Seattle again when I moved south and picked up a new Endocrinologist. There was a time under her care when I knew I was over-medicated, too, and again, voluntarily came off my prednisone. This time, however, the labs came back normal. It was then that we scheduled me for the neuroendocrinologist, or what I like to call a specialist to the third power (or specialist³) because you have to go through two layers of doctors to reach this guy. We knew that there was really only two reasons for hypopituitarism to go away: 1 - childbirth (and I've never been pregnant, even when trying - a clue itself) and 2 - autoimmune.

We had an MRI taken in this time, right as I began to get symptomatic again: I was nearly fainting after standing and just taking a few steps. This was a harsher version of when I first showed symptoms, when I was nealy blacking out from climbing two sets of stairs. Stair-master exercise machines were the worst. Just a few seconds on the machine, and my vision would tunnel, colorful or black & white spots would appear in my vision, and my whole body would start to go limp. This time, just three steps would bring me to my knees. The MRI came back "dirty" --- there was clear indication of lymphocytic invasion of both my pituitary gland and stalk. We finally had our smoking gun.

Why these people don't want to believe me now is baffling, but I need to stand my ground. I see my new GP next week, and hopefully she'll take over prescribing my prednisone, because my old GP refuses. How they can look at an abnormal result and prior evidence as to the cause of these abnormal results and say, "Nah, you can come off all your medication and you'll be fine!" is criminal to me. To threaten my life in that way boggles my mind.

I had reduced my medication the past few days to see if I could go off long enough to be able to have the tests show this again, but when I woke up this morning and my left leg didn't work, I decided against this course of action. It was the strangest thing. It wasn't "pins and needles" as you would feel if you'd lost circulation that way. No, there was just no feeling, and if I tried to put weight on it, I just fell. It collapsed underneath me. It was the most terrifying experience I've had to date.

I need to be at my medically best when I see this new GP. I have a new symptom which warrants extreme concern. I am not a happy camper at all. I am not well, but we can figure this out and manage it. However, I need physicians who are on my side and helping me search for answers, rather than denying the reality that is in front of them and placing obstacles in my way!

Since it's not kidneys, there should be something we can do to manage the fatigue. Since I'm experiencing new debilitating symptoms, we need to look at what else is going on in my body.

HEAVENS WORK WITH ME, PLEASE!

All I want to do is be a constructive member of society. Is that too much* to ask?

*Yes, quite possibly.

These medical bullies need to get gone.

Patient Non Grata

I wish I could say I did something wrong. I wish there was something in my behavior I could correct. I wish there was some sort of misconduct on my part for which I was being reprimanded. But there's nothing. I've done everything right. I've followed all the instructions. I've done everything I was told to do. Yet my GP is still washing his hands of me, and has no one he knows who does Internal Medicine and takes Medicare that he can refer me to.

Really? You work in a low cost clinic, and you know of absolutely no one else in the entire state that also does what you do? You suddenly completely forgot how to use Google? Excuse me while I find that a little difficult to swallow.

Meanwhile, my test results continue to come back abnormal, only to then have the doctor tell me, "There's nothing wrong here. You should stop taking your medication. That's what's making you sick."

Really? Because I remember being a HELL of a lot sicker BEFORE I was put on medication. And bakc then when the test came back abnormal, they put me ON medication, and --- you're not going to believe this --- I felt and got BETTER! Holy $#!+, what a concept!

I don't understand what's happening here. I don't dare leave this state because this is the first time in 10 years that I have pain & nausea control. But now it looks like I may be screwed anyway, because these people don't want to see or treat me.

I will call a highly-ranked GP tomorrow and see if she'll take over care, but I'm reasonably terrified.

Mother of Gods, what am I supposed to do?

And the Winner is... #HAWMC

Today, Ladies and Gentleman, is a prodigious day. I have, against the better judgement of my peers and the wisdoms of the ages, been awarded winner! Ed, tell me what I've won! No seriously, what have I won, because as far as I knew I was only in the running for "crankiest neighbor" and "worst friend ever..."! At least, that's how my acceptance speach would start if I were writing it tomorrow. Honestly, though, I don't like fantasizing about such things. Not because of fear I'll jinx it, though that is part of it... No, my problem is when I get to feeling like this, it's really difficult for me to imagine a time when I'll feel good again. I can't imagine being happy like that right now. I know I was happy on Sunday, I remember that fact. But I can't recall how it felt Right now, I hurt, and that's miserable and scary. Miserable, because I can remember all the times I've felt like crap right now... That's easy to imagine! And scary, because some of this pain is new and new is never good.

According to my counselor, this difficulty in recalling the good times when we feel bad is totally normal. It's a survival mechanism because obviously the last time we felt like this we survived, so let's make sure we remember all those times again so we can get through this next round of it, your brain would say, if it could talk objectively about its own processes. It doesn't matter that all those memories are nightmares, we obviously knew what we were doing, so let's make sure that's all we can think about until we feel better. Well, don't you think it might help if I could think of feeling better so I could feel better? I would ask, if I could talk to my brain... Nah! It would retort, you don't really want to think of something else. You only just just learned how in the last 50,000 years or so. That "feeling" part? That's a much older part of your brain, so it wins all arguments, even illogical ones.

Great... I even lose arguments with myself!

Seriously though, it is difficult to imagine anything good happening to me when I'm in the middle of hosting a pain parade through my cranium. I know I'd be able to play along with today's writing assignment if I weren't praying for my own swift demise (just make it STOP!). It would actually be a lot of fun to imagine just how'd I'd earned something like that. I could really challenge myself to say that I could only win based on something that I am NOT know for at all right now, and see if that helps me imagine new and fun things I could try in the future. The very process of figuring all that out would make me hopeful under normal circumstances.

Under chronic-illness circumstances, all it does is make me ask myself why I screwed up that one time I was nominated, and why does my disease have to steal everything positive from my life? All I had to do was send in an email and a URL. How hard is that? Apparently very... Who knew? But that's the kind of awful stuff my brain will lock onto when I feel physically bad. As if feeling physically like crap isn't enough, I also have to convince myself that I am crap, and this is probably all my fault just because it's happening to me. Of course I have my own brain to thank for this line of thinking, which really makes me wonder if my whole body isn't out to get me.

And the winner for Most Effective Use of Self-Sabotage goes to.... Pam's Body!

Thank you everyone! Good evening, and thank you for coming out. It been such a privilege to work with such an amazing group of organs. Skin, you're always overlooked even though you're the largest organ. You know the levels of pain this project required could not have been possible without you. Nervous System, always the life of the party, your antics really put us over the top this year. Your lightning fast ability to produce special effects is so amazing, it stopped me in my tracks! Endocrine System, your vast hormonal depths are still a mystery in many ways. Your contributions, partnering up with the brain for pituitary disease is legendary, we couldn't have done all this without you! Finally, Brain.... Brain... What can I say? You are the brains of this organization! Seriously, though, your ability to cause anguish is without par. Even the kidney stones are jealous, can you believe it? Do you know how hard it is to impress a stone? And beyond that, you added a deep psychological anguish that showed your true range as an actor. We were on the edge of our seats for, "I am Worthless Because I'm Worth Less," and who can forget how you opened our hearts with, "I'm Single & Deserve It"? My favorite is still, "You Hurt Because God Hates You," but I'm sentimental like that. Thank you again, everyone! As Pam's Body, I cannot tell you how much this award means to me!

Now that I could totally see!

Dear #Doctors,

I know logic. I studied logic at University, and even passed Organic Chemistry my first time through. I was pre-med and a chemistry major when my health showed me that there was no way I could be a doctor professionally. Didn't matter that my step-mother was a doctor, or that I could have gone to Wash U Med School on an Alumni scholarship (one of my ancestors was the first dean of the Wash U Law School). But none of that matters when I walk into a doctor's office. I'm supposed to be stupid, illogical, uneducated, drug-seeking and all sorts of other nasty terms for patients that I don't care to repeat here. I was even called a "strawberry" once by an ER nurse (it essentially means crack whore).

I'm not an idiot and I'm no fool. It's not that difficult to read test results when they send them to you with instructions written for a 3rd grader. I make my living on dumbing-down highly technical articles written by lawyers, engineers, and doctors! I've done it here even. So I'm no slouch. I know when I'm being fed a line of bull. You can't tell me that it's highly probable that I have a disease more rare than the rare one I have now. That's just stupid. But that's exactly what they're trying to tell me now, bless their hearts. And I ain't buying.

I am proud of my Midwestern roots, and I am proud to be from Missouri, the "Show Me" state. We got that name because of a particularly onery statesman, who on the floor of the U.S. Congress, was able to stop an entire movement with that line. As the story goes, he knew that he was looked on as a country bumpkin, and he used that to his advantage (if you've seen House of Cards, you know what I'm talking about). He let them be swayed by his slow southern drawl, and then when they weren't expecting it, he plunged in the knife:

"Now gentlemen, I may be slow, and I may be just a Missouri bumpkin.... But from where I come from, talking ain't doin'. If you want my support on this bill, then you better SHOW ME it can work..." (I'm paraphrasing...)

Point is, people who don't know forget that St. Louis is a city Older than the United States. If you don't know me, you'd think I was all those ugly terms they like to call patients. (Now I know why they call us patients.... Because they demand we be patient....) But if you were to check your sources, run your tests, all that good due digillance stuff... you'd know: I ain't lying, sailor. Never then, never now.

And I know a thing or two ;)

So on to the next endocrinologist appointment... Wheee! [/sarcasm]

When I Drempt of Being a Unique Snowflake, This Is NOT What I Had In Mind!

I don't know if it was a steady diet of fairy tales in my youth, or if all teen-aged girls do this, but I'd often dream of being recognized as special and rare... when they gave me my diagnosis of Autoimmune Hypothyroidism, I did not put a check in the "winning" column. Oh, it was a win, to be sure, to finally have the root of nearly all my symptoms (those not given to me through my battle with MRSA - not a good time, by the way). I'm not sitting at home asking people to take pity on me. Share in my frustration, cry with me through the tough stuff, but don't ever pity me, I am not a woman who needs or wants your pity. So when assumptions are made about me based on conjecture and prejudice, I am truly dumbstruck. I shouldn't be, but it happens every time.

You and I exchange knowing looks, roll our eyes, and say, "better luck next time." But we all know the epic grind it can take to gather up all the medical evidence you need... meanwhile, I'm wondering if my soul is being weighed against the mass of a feather as somehow 10 years of evidence means jack-all, given one "I thought it up so it must be true!" Ten YEARS, and somehow answer B looks to be the better choice in their professional opinion. There I go again.... speechless.

I mean, my Unicorn Sister and I could write volumes on the bits they've left out of the books on our disease, but that's because we both have the same thing. And if this was all a prednisone mistake, how did I know I was in remission and overmedicated? Why did I request to come off my meds for 9 months if it was just one big misdiagnosis? How on earth would I have and MRI showing an INFECTION in my PITUITARY?!? Did I drill a hole into the middle of my brain and expose it to bacteria? I mean, what?! What more do you want than PHOTOGRAPHIC EVIDENCE? And will someone wake me up from this nightmare? Can I get an, "Amen!"?

And why was I so scared to go to med school if this is what I can expect? (I know why I didn't... chronic illness made me drop the program, and I went for my best chance just to get through -- and I'd almost kill for that kind of health again! lol) So who am I kidding, I would have washed out, burnt out or both. And I'm happy with the path I ended up on, so no regrets....

Still, there are some days...

My grandmother knew there were days like this. That's why she didn't let them touch her after her heart attack, and she lived for another 30 years. There is truth behind an old medical school saying, "Don't kid yourself, the moment you walk through that door as their doctor, you start killing your patient." And I agree, there should be caution in medicine! Unless the disease is killing them faster than not intervening, and that's when its appropriate to step in, risks be damned.

So like I found my pain specialist, I will find my endocrinologist. Referrals are unreliable. Sure that fellow doctor is good to you, but you're his peer! That has no relation to how he deals with his patients. So I'll have to come up with my screening questions and start interviewing practices. I miss the old bydls message boards; they had lists of doctors that would be objective about tough cases, and several listings for a place as big as the Front Range. Such a loss. Still, I can do this. It's gonna be a grind, but I can manage it, and make it look awesome doing so.

It would just be nice if the system worked the way its advertised for a change, ya know? Oy vey.

P.S. - I went to the IDA banquet recently and have wonderful pictures to share, but I got sick with a stomach flu shortly after so I'm just now starting to catch up. More soon, I promise!

P.P.S. - Calling myself a Medical Unicorn is just a play on that whole "think horses, not zebras" med school saying, though it is terribly ironic in this context. It's okay to snicker. ;^)

The Curse of a Bad Doctor

This is a horror story too many of us know all too well: a bad opinion of some doctor gets in your record, and the ghost of that awful experience haunts you throughout your medical quest, poisoning the options of others before giving you a chance. It's happened to me more than once, and it can ruin entire health networks for you. It's happening to me again, as the notes from the doctor who though she could diagnose me through looking get forwarded on to the new endocrinologist I'm trying to see. I was called to be told that they had no reason to see me, even though the labs contradict everything she states in her letters!! But who cares? She's the head of neuroendocrinology for the state, so who's going to take my word over hers?

So I'm going to have my MRI sent from Seattle, the same MRI that got me in to see the quack (but mysteriously that keeps getting left out of the pile of evidence), and see if he'll take me after that. But even if he does, that doesn't mean he won't have an attitude when I finally do get in to see him... Doctors are funny like that. They don't like it when patients push back, regardless of whether or not it was the right thing to do. All I can do is hope he sees reason, but that too seems in short supply among doctors. If the original doctor I'd gone to see had been reasonable, I wouldn't be in this mess. I mean, really... Who gets lab results that disprove the theory, only to have the theory upheld and the evidence discarded? Isn't that what they teach people NOT to do in the sciences?

She claims my original cortisol stim test was "mildly abnormal" which is dead wrong. My original diagnosing doctor was surprised I wasn't in a coma! She claims that medication changes were based on my "feelings" and never mentions all the labs that supported those "feelings." She claims I've been on prednisone since my original diagnosis, but I was off all medication for 8 months while my disease was in in remission. She claims no worsening vision or diplopia (I have both). She says I dont' have cold or heat intolerance (I have both). She claimed no tingling, burning or numbness (I have all three and I'm on serious medication for all three). She claims I have no muscle weakness or easy bruising, when I told her of both. And she claims I have "emotional lability" (a nice way of saying neurotic) all because I got a little choked up telling her about 10 years of chronic pain... as if I was supposed to be stoic through the whole thing.

And now I can't get a doctor to give me an appointment because of all her lies. What ever happened to "do no harm"??? How on earth do a fix a medical record that's full of LIES?!?

SO ANGRY!!

Pay It Forward

I have had strangers reach out to help me just when I needed it most. They did it out of the kindness of their hearts and then, just as suddenly as they appeared, they'd also disappear, leaving me with a huge desire to reciprocate and no one there to receive my gratitude. So I do the next best thing. If I can't pay back, I pay it forward. This is why I'm so overjoyed to find a home a HappyHealth. I can't say it enough... Here's a chance to do genuine good for the community that has supported me for so long.

I'm writing the design specs as we speak. I'm so exited that I have to remember to curb my enthusiasm! So many things are easier said than done, but I believe all the pieces are falling in to place to make this a dream come true... (Knock on wood!) Our focus group has provided a lot of good feedback, and we're responding to it with design changes. Our focus groups is where patients are helping make a website that works for them!

But the scary part is, it's so easy to fail. And my health isn't helping one bit. I've had to quit full-time work because I'm losing potassium to the point I was hospitalized for two days. That should not happen with my disease, and all the literature says to -avoid- potassium. So I'm a medical freak among medical freaks. Great!

But I'm not letting that cloud my vision. I want to give back to every health blogger, every active member in grass-roots, patient-built forums... I want to give back to everyone who gave to me, and that list is long! So I'm going to give my all into making HappyHealth a reality.

See, every other Health-Industry-supported patient-website out there is falling all over themselves to help people with the heart & vascular disease, diabetes, and/or obesity, as if those are the only health issues out there! But you and I both know that chronic pain is a far worse epidemic than anyone else realizes!

Millions suffer from acute or chronic pain every year and the effects of pain exact a tremendous cost on our country in health care costs, rehabilitation and lost worker productivity, as well as the emotional and financial burden it places on patients and their families. The costs of unrelieved pain can result in longer hospital stays, increased rates of rehospitalization, increased outpatient visits, and decreased ability to function fully leading to lost income and insurance coverage. As such, patient's unrelieved chronic pain problems often result in an inability to work and maintain health insurance. According to a recent Institute of Medicine Report: Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research, pain is a significant public health problem that costs society at least $560-$635 billion annually, an amount equal to about $2,000.00 for everyone living in the U.S. This includes the total incremental cost of health care due to pain from ranging between $261 to $300 billion and $297-$336 billion due to lost productivity (based on days of work missed, hours of work lost, and lower wages).

Much more needs to be done to meet these challenges and to increase public awareness of them.

--American Academy of Pain Medicine, "Facts on Pain" (emphasis mine)

More does need to be done, and I believe we're the ones doing it.

Could you imagine saving the equivalent of a grand per citizen per year in health costs? Could you imagine taking 7 million people and putting them back to work in an environment custom-suited to their disability needs? These are very REAL possibilities at HappyHealth. This is what we're working towards, while helping doctors manage more cases with less time, while providing better patient care and support.

And if we can do this for the chronic pain community, then repeating our success for the other three health biggies should be easier to manage.

I know it's a big dream, but I'm not dreaming this just for me... I'm dreaming this for my Unicorn Sister, and Ellen Schnakenburg, and Kerrie Smyres, and everyone else who's given me support through the last decade, not to mention all my great doctors! There are too many people to count!

So not only do I want to do this with all my heart, but I believe I owe it to all of you to make sure I give this my best. I mean, above all, I want to save someone else from having to go through the hell I did with my disease. Now that I've done this for a decade, I've figured more than a few things out that I wish I had known from the very start. And I'm sure there are plenty of others who can say the same. If so, stay tuned here or at HappyHealth.me for when we start rolling out opportunities to let your expertise shine!

But in the meantime, I have a document to finish!

You're Fired!! (or, How To Find A New Doctor)

It's one of the scariest, most humiliating events that can happen in a patient's life. The doctor comes in and says, "I'm sorry, but we have nothing left for you." That's it. Maybe a 30-day supply of meds, but it's over... You've been fired as a patient. Your heart breaks, and sometimes they even blame you as an excuse to cover their @$$. You feel defeated, abandoned, and most of all, rejected. I thought being fired meant the doctor had decided there was no hope left for me. And for the first six times it happened to me, I felt suicidal afterwards. But thankfully I had friends and former doctors who told me through my tears that it was NOT my fault, and there are doctors out there willing to help. It's just a matter of finding them, which I was finally able to do. Here's how...

First, know that you're not alone. Second, Do NOT take this personally!! They most likely didn't fire you because of anything you did wrong. They fired you because they can't handle your case. That's not your fault, that's their shortcoming. And having you around is just a constant reminder of their failings. Of all the professionals out there, doctors are least likely to admit they can't do something. Which means the only ting left is blame the victim (i.e., patient).

Know that I'm so sorry you're going though this. But also know this isn't the end! This is a Golden Opportunity to find someone who genuinely cares. I've been able to do this myself, even though it took me a long time to figure this out (years). If you follow the steps below, you should be able to find a doctor who won't run away.(YMMV*).

Call doctor's offices and ask to speak with the appointment scheduler. When you get a live person, ask them if you can ask a few questions about the doctors first. (If you're redirected to a nurse or other staff, that's fine... Just make sure you're talking to a live person for the next steps.) Start of by explaining that you have a difficult case, so you need a doctor who's going to be willing to spend a lot of time with you. Tell them you're looking for someone who specializes in tough cases, and ask if there are any doctors like that on staff, and if they're taking new patients (and your insurance). If you're in pain and this is a pain clinic, ask if they allow narcotic therapies in conjunction with other remedies. (You can also ask if they are into any Eastern remedies like acupuncture and mindful meditation.) If you like their answers, thank them & schedule an appointment. If you *don't* like their answers, thank them for their time and call the next office. Repeat until you find a willing doctor. Once you do, go to your GP and ask for a referral to the doctor you've found (most are happy to do so). If they ask why, tell them the answers you received and why you think that doctor is right for you. Make your first appointment.

"I thought being fired meant the doctor had decided there was no hope ..."

This is not "doctor shopping," this is doctor screening. Some doctors are in the point in their career that they want just the easy, routine cases. They are not likely going to want to help us. Younger doctors are often more willing to take on challenges to prove their skills. Older doctors, doctors close to retirement age, not so much... Unless they've specialized in tough cases (there are such doctors), but those doctors are rare.

IF YOU RUN OUT OF MEDICATION, you can go to your local Urgent Clinic or Walgreen's Clinic for refills until you ware able to get into your next appointment with your GP. Your GP will normally cover medications during a transition period. However, if it's your GP who fired you, that can really leave you in a sticky situation. In that case, call any specialists you see and let them know what's going on with your GP. They're also usually willing to cover temporary  medication refills during a transition like this. You can also talk to your pharmacist. Many of them will be able to give you a few days' supply of vital medications, or medications you shouldn't come off quickly. Of course, narcotics cannot be obtained from anyone but a doctor. Worst case scenario, go to the ER.

Good luck, and I hope you find a doctor who will work for you.




^*YMMV - Your Mileage May Vary

Opportunity of a Lifetime - HappyHealth

For those of you still with me, thank you. My situation has changed, and I can return to more regular updates. But more importantly, I've been given a golden opportunity to finally give back and start serving the community that has helped see me through my darkest times. It's been through grass-roots community efforts that we have been able to help one another. And now those grass-roots ventures have a chance to team up with a company that wants to listen to us and our needs, and find a better way for our doctors to help us, and not give up on chronic cases like ours.

If you're anything like me, you've been fired from a doctor and given that awful send-off: "I'm sorry, we have nothing left for you." It's humiliating, shocking, and can send you into a talespin of self-defeat. But I've learned through my research and experience that when we hear something like that, it has nothing to do with us and everything to do with the doctor's unwillingness to deal with a "heart-sink case." They see no way to make us better, so they give up and hope that some other doctor will take over. But that's incredibly short-sighted: there's still a person in there, who has to live through all this, and it's really difficult not to take it personally when your doctor fires you for you disease. We wonder what we did wrong, when it has nothing to do with us at all and everything to do with the circumstance in which we're trapped.

And studies on happiness show that it's not the chronic illness that makes us unhappy... It's unmanaged symptoms. "If you have manageable health problems, it doesn't really matter [to your overall happiness]." (At the 3 minute mark http://www.ted.com/talks/stefan_sagmeister_7_rules_for_making_more_happiness.html). What does to happiness, as that video goes on to show, it a person's connectivity to others, and it is exactly that connectivity that gets obliterated when a chronic illness strikes.

But I think there's hope. I think if we can show doctors that, while they may not be able to win against our disease, they can still improve our situation so we can be happy despite our disease, we'd have a real winner on our hands, one that could revolutionize the treatment of people with chronic illness. I think if we can present doctors with a tool that gives them the ability to treat our symptoms more successfully, we can help them to help us get better.

I was recently contacted by a health start-up called HappyHealth. They want to work with me in addressing the needs of patients and doctors, improving outcomes where other companies don't even want to try. But they don't know the secret that we do. And that is, if we can make a difference for folk like us, then everything else is a cake-walk. I know that if we work together to make this happen, we could change the world into a better place.

You can help too! We're looking for people with chronic illness and an opinion to share their thoughts on how HappyHealth can best serve YOU. Every other professional health website/app out there has been written by healthy people for sick people, and they often completely miss the boat on our needs. But if we can create a
place that works for us, and one that helps our doctors not give up on us, then we could help out a lot of people in need.

Additionally, I know that there are many of us out there who are trained professionals who would love to work, but our unreliability due to our disease makes living up to normal standards impossible. I want to create a system whereby it doesn't matter if you don't know when you'll be able to work, the work is there when you're ready, and you never have to worry about dropping the ball. If you can't finish, someone else will pick up where you left off. You'd also be advised by the software when you're about to hit your monthly income limit, so as not to interfere with your disability benefits.

I don't know if I'll be able to do this all, but these are my life goals. There are too many people out there, stuck at home, cut off from life, through no fault of their own. We're routinely ignored and forgotten about because of our illness, and without a medical breakthrough, have no way of making our situation better. I want to change that.

Come join us! We're brainstorming and planning right now, so you could be there from the very start... Send me your email address and I'll send you and invitation to our Facebook group!

Oh, and for more information on HappyHealth, here's a video on the first phase of the project....



I look forward to hearing from you!!

Stocking Full of Coal

Many of you know, I suffer from a rare pituitary disease, for which there are less than 500 people with the disease. This is why I call myself a Medical Unicorn. When I got the diagnosis, I figured that my disease was so rare, there was no possibility that there would be a cure. There just aren't enough of us for it to make a difference to even try to find a cure. There's certainly no money in it. But then, it happened! They stumbled upon a cure, in the process of trying to fix something else in a patient. I've been trying for the last year and a half to get that cure.

My chase for the cure started with me moving to the Denver area. Doctors who study the pituitary gland are called neuroendocrinologists, and there aren't many of them in the country. There was one when I lived in Seattle, and they were the ones who originally confirmed my diagnosis. But Seattle is way too expensive a town to live in, and after my ex-husband suddenly cut off my court-ordered spousal support, I had to move back home to St. Louis. However, I quickly discovered there wasn't a neuroendocrinologist for a 5-state area. I was shocked. I was sure there would be one at Washington University, but no. So after exhausting everything I could do in St. Louis, and with the help of mt father, I moved.

It was a struggle getting an appointment with the neuroendocrinologist in Denver. At first they told me they wouldn't let me in because the University Hospital, with which she was affiliated, wasn't taking any more Medicare patients. I had my old neuroendocrinologist in Seattle fax over my MRI that showed the inflammation of my pituitary gland. That got me in.

But then, the neuroendocrinologist here took one look at me and decided that all my doctors of the past 10 years were quacks, that they had misdiagnosed me, and that all I needed to do was to come off my medication and I would be fine. She said that my thyroid problem was caused by another autoimmune disease, and it would show up on her tests. Well, it didn't. All my test came back proving her wrong. But did she change her stance? No. She still insisted I could come off all my meds and would be fine. She never said what was causing my thyroid to not work, since I came back negative on all other autoimmune disorders.

I tried switching to another neuroendocrinologist, a resident in training. However, since their scores are dependent on the exact person who dismissed me... Yeah, I didn't get any further except to keep having them spin their lies at me. At one point, I got the resident to break down and admit that they weren't going to do anything for me. I was devastated. I had the disease, I had the cure, but I couldn't get access to it.

Then, a miracle occurred. I couldn't have wished for better. My endocrinologist, the woman who had diagnosed me, and had send me to the neuroendocrinologists, was herself promoted to that very same position!! Gods be praised, I was overjoyed. I wouldn't have to prove anything to her, she was there! She was there when my disease went into remission, and I was able to come off all my meds, and she was there when it came back. It was a homecoming.

I couldn't afford the trip on my own. So I held a fundraiser, and my friends and family came out in support. I was able to make the trip to Seattle and reconnect with my old doctor. She hadn't heard of the cure, but she was able to look up who was involved in the study, to try and get the correct dosage and protocol I would need to go through to cure me. We waited for an answer.

And waited.

And waited.

I called her office today to see if we'd had any luck. Only when I get the pre-recorded greeting, it tells me that my doctor is no longer in practice!! I got no letter, no warning. Nothing. Like a stocking full of coal on Christmas morning, I'm beyond grief. I have no idea where to turn now. I can't afford another trip to Seattle. Her replacement will be a stranger who also may not believe me. Doctors don't believe in medical unicorns.

There's a cure, and I* can't get it.

She left her practice, and didn't tell me.

Who do I turn to now? Where do I go? What do I do?

How do I get what I need?

F.M.L.



[Edited to add:]
* I should actually say WE can't get to the cure. I know of two others (Hi Jana & Cathrine!) who share my disease and who's doctors are looking to me and my results before trying it on their patients. I'm leading a charge here, and I feel like the wind has been knocked out of our sails.

Please, if you have any insights... share them. Pass the word along. THIS CANNOT END HERE!!

[Edited to update:]
Never mind!! I found A Diamond in the Coal!!!

Pitting the Healthy Against the Sick

I had a troll recently go off on me. I have to say, it bothered me at first. But, bless the strangers on the internet, they defended my position, and even went so far as to deconstruct his argument showing that he was guilty of the sin he was trying to cast upon me. The only thing he proved was how much of an @$$hole he was. But he raised a very interesting point... He believed he had the right to tell other people how to live because it cost him more money on his health insurance. And that, right there, is the reason why "give my people health insurance" is a bad idea. The healthy people have to pay for the sick people. And the healthy people resent it.

This is especially true in this country, where the media claims that any health problem can be solved through "healthy living" (and buying the product they're selling). The medical profession has done a great job of smoke and mirrors, hiding how much we don't know about health. But this leaves people who haven't been through the system with the belief that the system always works for everyone, and if you didn't get better, it's your fault.

And there are some amazing myths that persist in the healthy world, about the would of the sick. They believe that doctors run excessive amounts of tests to cover their @$$ in case of liability. But how can we judge what's excessive and what's not? Right now, there's a huge debate raging on mammograms, whether or not we're putting women through cancer treatment who don't really need it, just because of something seen on the scan. But do we know that's actually what's happening? What if we're catching cancer really early and saving these women's lives? What if we're treating women for cancer, ruining their lives with chemo and other processes, who would have been fine if they were left alone? Are we doing more harm than good?

See... we don't have all the answers. Sometimes, we don't even know the right question to ask. Health care is messy. There is no neat formula to follow that will guarantee a healthy life. We're learning new things about diseases every day... things we didn't think were possible. Mother Nature is a wily character, with lots of tricks up her sleeve. There are more things in heaven and earth than we could possibly imagine. So we don't always get this health stuff right.

Then there's human error...

All told, as many as 98,000 deaths occur each year due to all kinds of medical mistakes--the equivalent of a fully packed 747 crashing every other day. According to a congressionally mandated study on Medicare recipients, during 2008, 1 in 7 hospital patients experienced at least one unintended harm that prolonged his or her stay, caused permanent injury, required life-sustaining treatment, or resulted in death.
(14 worst hospital mistakes to avoid - NBC News)

And what about when the treatment is worse than the disease? CT scans are useful in the early detection of lung cancer, but the CT scan itself causes cancer.

The risk of developing cancer from the CT scan itself isn't trivial. A recent analysis published in the Archives of Internal Medicine found that a single chest CT scan exposed patients to the radiation equivalent of more than 100 chest X-rays, and that at age 60, an estimated 1 in 1000 women or 1 in 2000 men would eventually develop cancer from that single scan. (Participants in the lung cancer screening study actually underwent three consecutive annual CT scans.)
(4 reasons to not be screened for lung cancer - Common Sense Family Doctor)

And ultimately, the problem is that "Much of medicine exists in a grey zone where there is no one right answer about when to treat and how to treat. That is why you need to figure out what applies to you and what doesn't and how you weigh risk and benefit." (How to Talk to Doctors - Freakonomics) But that doesn't work well if someone else is footing the bill. It especially doesn't work well when cost-creating behavior is "rewarded" with health care, and healthy people are "punished" for their good behavior (losing money on health insurance and gaining nothing in return).

This results in a dangerous situation. Healthy people believe they're in the right, and that sick people are in the wrong. They believe that since it's their money, they then have the right to tell me how to live. And why not? My behavior costs them money. Suddenly there is a huge incentive for them to be all up in my business---how I eat, how I sleep, the risks I take (riding a motorcycle), and all the other choices I make in my life that could affect my health. That's now their business, because it's their dollar on the line.

And you'll have to pardon my tin-foil hat, but I also don't like the idea of the government being all up in my health care either. It means the government will track me from cradle to grave. Unlike most people who just need a yearly physical, I require at least one doctor visit per month. Why? Government regulations that are already in place require it. Why? Because of the War on Drugs (and what a huge waste of taxpayer money that is). And do you really think the government cares how much money it's going to cost you? It doesn't hurt the politicians when your health care insurance costs rise. And what's going to happen when people complain? The government will step in and create laws trying to force people to be healthy. They will restrict freedoms all in the name of controlling health costs. It's already happened in NYC. (NYC Super-Sized Soda Ban: Now in Effect - US News)

1% of the people account for 30% of all health costs. "One patient alone racked up $3.5 million in medical bills over a five year period." (Zakaria: 5% of U.S. patients account for 50% of health care costs - CNN) And what's the easiest way to cut those costs? Let 'em die. Kill off 5% of the population and our health costs drop by half? Do you really think with numbers like that, that there's an incentive to treat these people and keep them alive? Don't kid yourself. Health-cost-related deaths are already a reality in the U.K. (Top doctor's chilling claim: The NHS kills off 130,000 elderly patients every year - Daily Mail)

You'd think with my health care problems and costs that I would love free government health care. Sure, it helps me. In a big way. But at what costs? If it's at the cost of my freedom and privacy, and possibly my life, I'd rather not. But that's where we're headed anyway... And it terrifies me.

Invisible Illness Week - Post # 300!

It's the close of Invisible Illness Week, and this here is my 300th blog post! Can you believe it? Yeah, I was pretty impressed when I noticed it. That's an awful lot of writing on dealing with invisible illness. But if you have an invisible illness, you know that I could easily write another 400 blog posts on what it's like. Because, when you get an invisible illness, it transports you to a different planet, with new rules and new realities, that other people just don't get. I didn't get it today for my brother.

My brother has vaccine illness from the anthrax shot, and on his planet, a storm was brewing. I, of course, couldn't see it. I don't live on that planet. Some of the things about our two planets are similar---I know that when I feel bad, he feels worse and will need more rest. He gets the same weather triggers I do, and we're often knocked out at the same time. But this evening, all was fine in my world, when everything was not right in his. I was able to get him some emergency supplies (chocolate), but he still got hit with an attack that left him shaking and vomiting.

I made him promise to never cut it that close again, because I hated seeing him like that. But in his defense, he said, "I've never had anyone respect my illness before." And that just broke my heart. I know what it's like to not be believed, not be respected, and being told that you're making it all up for attention. It's soul-crushing... because first you've got to convince folks, no, you really don't feel well, and that's all while you really don't feel well, so you're not your best at explaining things anyway! It's a moral kick in the gut when you're already feeling vulnerable and at the mercy of others.

Then, if it's doctors that don't believe you... well, they're the gatekeepers to most all things health! If it's not a skinned knee, a mild headache, or a cold/flu, you're screwed when it comes to fixing your problems yourself at home. And when it comes to getting a correct diagnosis... it can take 7-10 years to get a correct diagnosis when your doctors believe you. It can take agonizingly longer than that if they're antagonistic towards you. No one likes an angry nurse. An angry doctor can poison an entire institution against you.

And, of course, having someone on your side who believes you, and has seen your trouble first hand, can make all the difference in the world. Despite what the OSD says about the Anthrax Vaccine, "U.S. District Judge Emmet G. Sullivan ruled December 22, 2003 that the Department of Defense must stop forcing soldiers and civilian employees to get the anthrax vaccine, saying the vaccine is an experimental drug not licensed by the FDA." But the DOD back-ended their way around that by having the FDA call it safe after the fact, even though Attorney Mark Zaid cited research from an FDA panel in 1985 -- which was also mentioned in the FDA statement Tuesday -- that said that "no meaningful assessment of [the vaccine's] value against inhalation anthrax is possible," Zaid said. Based on the research I was directed to by the CDC, there have only been two human studies, and one of them showed severe side effects compared to controls. Um.... There have been drugs, good drugs (Demerol, for example), pulled off the market for far less! And yet there's this whole web site by the Offices of Strategic Defense that are telling me, oh, no... it's just fine! No one gets sick from this! Really?? I found "one study shows that the incidence and severity of side-effects are significantly higher with the killed vaccine than with the alum-based placebo (overall odds ratio 0.16; 95% confidence interval 2.38-27.17)." [Source: http://www.ncbi.nlm.nih.gov/pubmed/9682332] Just fine, eh? Would you like to sell me a bridge too?

My brother deserves a chance to be well. I'm gonna work my pants off to make that happen.

#NMAM "Run, Forrest, Run!!!"

Describe the approach you think is best when it's time to move on to a new doctor. The following are times you should leave. 1) When they don't return your phone calls. 2) When you have to do their office work for them. 4) When they diagnose by just looking at you. 4) When they give diagnostic orders opposite of the what test result are. 5) If they accuse you of behavior you know you're not doing. 6) If they refuse to run a simple blood test.* 7) When they lie to you. 8) If they don't stop when you tell them that what they're doing to you hurts. Yes, these are all personal experiences.

I was told that I was drug seeking... for prednisone (laughable in itself). I was told, "Nobody can be that sick!" by the doctor who has been my family's doctor for generations, and knew me before birth. I was told not to make a follow-up appointment on several occasions, with the line, "I'm sorry, we have nothing left for you..." Which really means, "I'm sorry, we have nothing left we're willing to give you..."

*I had a doctor who refused to run a cortisol test on me. If he had done that, I wouldn't have nearly died from an adrenal crisis. And I would have been diagnosed, and put on treatment 3 years earlier. I would have gone through 3 years less of suffering and struggle. I wouldn't have reached any of my miracle cures sooner, but I would have had to endure less in the meantime. Hell, they probably could have made me functional enough to keep working, but because of the combined arrogance and the War on Drugs (read: War on Patients), I ended up disabled and on government assistance.

However, my caveat to number 6 is, don't just go in there and order blood tests every week. That looks like a villain that doctors are told to ignore: "Googleitis: I read it on the internet, so I must have it." If you think you have something, don't go in there with a print out and say, "I have all these symptoms." Not unless you absolutely know you can trust your doctor to believe you. Instead, if you think you have something, first tell your doctor the story of what your day is like. Describe what going through the symptoms is like and how it impacts you. Then you might say something like: "Now, I was doing some research out of curiosity, and I came across this diagnosis that seemed to match. What do you think?"

I've written number 9 before. It's a tough topic, so I don't mind putting it out there more than once. It helps with my healing. With one doctor (a surgeon, go figure...), they almost needed a pair of pliers, he had driven the needle so far into my skull. He assume I was lying to him when I told him it hurt. He'd aimed wrong. He had a live Xray on (not just a snapshot, but a here's-what-you're-doing-right-now-Xray machine), but he misjudged anyway. The needle was supposed to go along the top of my skull, without touching the very sensitive tissue that lines it. He took that needle and drove it into that tender area, and drove so hard, that they almost needed a pair of pliers to get the needle out of my skull.

This doctor was so arrogant, he didn't believe is own senses! He had to push to drive it in. That's no small matter, putting steel into bone. He managed it. He ignored the resistance he was meeting. He ignored what I was telling him. I screamed so loudly, they heard me 3 floors down. That was also the surgeon, under whose care I didn't receive enough anesthesia, and woke up, post surgery, but still on the operating table. I woke up because my chin was burning. My chin was burning because they had infected me with MRSA. The MRSA that almost killed me multiple times. Unfortunately, he was the surgeon assigned to the study, so I had no other choice.

How do you fire a doctor? Just don't make a follow-up appointment. It's that easy. What's not so easy is explaining to your Primary Care Provider (PCP) why you needed to fire that doctor. In my experience, if you can give your PCP any of the reasons listed above, you'll find your provider will agree, "Run, Forrest, run!!!"

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."

#NMAM The Match Game

Describe the perfect doctor for your migraines. I'm extremely lucky. Although she is no longer my migraine specialist, when she was, she was AMAZING. This woman, while she was out sick with the flu, read up on my 4-inch thick medical file. She called me at home when she had THE breakthrough. At the time, she was also a pain specialist. She was the first pain specialist to believe that I wasn't a drug seeker: "I know why none of these medications have worked on you," she told me, in her thick, eastern European accent. "They can't!" She was the one who stopped the 4.5-year migraine.

The Navy had moved my husband and I from the high desert (elevation above 5000', 300 days of sunshine a year), to the greater Seattle area (sea level, 300 days of clouds a year). We had just discovered my pituitary insufficiency, and had even had the Navy delay our move and put us up in a hotel, because we were in the middle of diagnosing. I landed in Seattle with new medical information, and I was just getting my medical dream team together (Swedish Pain and Headache Center was listed as the best, and Dr. Francis Broyles was one of the best endocrinologists, and my rheumatologist had top reviews too. But it was Dr. Elena Robinson who was my migraine miracle worker.

After being able to confirm that my migraines were not medication-induced (my one-month adventure with disassociation on Gabatril, aka Tiagabine, allowed that), she put me on long-term pain pills, along with medication that wouldn't come into conflict with my pituitary disease (medications that affect the salt channels can't work on me while I'm on a salt-regulating medication!). She taught me everything there was to know about the most cutting-edge theories of pain and nerve plasticity, long before I discovered the TED and university talks that discuss the same thing. It was with her help that I was able to write my paper on migraines. She took time out with me at each patient visit, often allowing me to stay longer (because she knew I had the time to wait) and giving me more information at little breaks she was able to get between other patients. She always answered all my questions, and let me know what her thinking was.

She wrote letters to Medicare and Tricare on my behalf, trying to get botox approved for my migraines when the FDA hadn't added it to their magical list yet. She wrote letters to the Department of Education to try and get them to stop garnishing my student loans (through an application for permanent disability). She bought me chocolates (completely forgetting in the panic of the moment, that chocolate was one of my triggers), after the horrible incident with the surgeon. She called a pharmacy to yell at them when they refused under the "morality clause" to refuse to fill a pain prescription. She yelled at another pharmacy for me when they screwed up and put "take every 1-2 hours" instead of "take every 12 hours" on a slow release narcotic I was on. She was the one willing to try the Fentanyl lollipop for me (a medication I was required to keep under lock and key), only to discover (to our chagrin) that Fentanyl doesn't work on me at all.

Most of all, she believed in me. She believed in my willingness to fight and beat this, and not be a heart-sink case, even though everything else had failed, and I was in "here there be dragons" land of the medical world. After she knew it was my disease, and not me that was obstinate and difficult, she was a champion for me. I miss her, but I'm glad I no longer need her.

I still average 1-4 migraines a week, but now they're so minor that they rarely get in my way. Every once in a while, when the weather goes really wacky, I'll be down for the count. The only thing that isn't medicated is the emotional swings (because there are no medications for migraine mood swings). But given my current tool box, I'd call my migraines managed, which is absolutely amazing, considering where I've been.

Migraines took me to a deep, dark hell, one from which I thought there was no escape. But I climbed those obsidian walls, through brimstone and fire, and pulled myself up from those depths, to see blue skies again. The future is even brighter. Now, perhaps if we're able to manage or eliminate my pituitary disease, we might be able to take the migraines down yet another notch! This will allow for less medication, and the less medication I can be on overall, the better.

I had the perfect doctor for my migraines, and she made all the difference.

"National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by www.FightingHeadacheDisorders.com."