What Does This Say About Me?

I remember when I was a young twenty-something, there was an older woman who was a mentor to me, whom I loved, and who I wanted to emulate. Then suddenly, she became hospitalized for anxiety, and I found myself frozen. Mutual friends would say how much a visit from me would mean, but I was too afraid of what her hospitalization said about me. And I knew my reaction was irrational, but I just hoped she would get better so I could see her soon. What I did know is where I'd seen this before: in training films on alcoholism recovery. When someone in the family decides to get sober, other family members will often rebel, and even try to persuade the alcoholic to start drinking again, because of the fear they have about what that person's decision says about them. Here's someone they love, who they see a lot of themselves in, and they've chosen to put down something they know they enjoy, and they wonder, "What does this say about me?!

The answer is:

Absolutely nothing.

We may see ourselves in others, but that does not mean we are others. Just because they make a decision to change their lives does not mean there's anything you need to do except continue to be their friend. And I know that this is an instinct that is almost unavoidable when we're close enough to someone. But that doesn't mean we can't overcome it. I was able to send condolances to my friend and tell here that I was too scared, and I hoped she forgave me. If nothing else, we were always honest with our feelings. And she did get better, and was able to paint the town red, and I couldn't be more proud of her.

The reason why I liked her was she was a powerful woman and a force to be reckoned with. That didn't mean that sometimes she didn't need help too— we all do. The more important point was that she was responsible with herself and her life, and she was able to guide so many young women on to true self-esteem. I still have her signiture in my favorite book in a bookcase not too far from me. We eventually lost contact after I moved to the PacNW, but she has had a lasting impact on my life, and I credit her with a lot of my maturity. She taught me how to own my mistakes with humility and not humiliation, when I had not know there was a difference.

And I know that's the reason why many healthy people don't deal well with people with chronic illness. We just want our friend to get better so we can hang out with them like we used to, and we hope to God that we don't have anything chonic that may be lurking in us. Somewhere in the back of our minds we wonder if this is how growing old starts, or bad luck starts, and then we shake our heads, wonder why we're allowing ourselves to think so irrationally, but we still can't shake the feeling of impending doom, headed towards us all.

It's human to be scared. It's also human to overcome our fear and realize, our friend is our friend, and we all stumble on the road of life. It's worthwhile to reach out to others even if they haven't reached out to us, and not wait until they're better to seek their company. We can let them know their company is missed, even if we can't talk to them directly. (Although this is now the age of cellphones and SMS text messages, so really, you have no excuse ;) Know that even just a word of encouragement and appreciation can help so much.

And remember: What does this say about you? Nothing you need be ashamd about. You're human, just like the rest of us.

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.

"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

The Loneliness of Illness and Pain

This is one of the best blog articles on #chronicillness I have seen in a long time. Written by Wayne Connell, Founder and President of the Invisible Disabilities Association (IDA), it starts out with phrases commonly heard by folks who are disabled when others find out about their status: “You’re lucky you don’t have to work!” “You’re just giving up!” “You need to get out more!” Things that still make me wince just to read them. Things that still very much hurt my feelings when I hear them today, even though I know them to be patently false. But that's never stopped anyone from saying them.

Wayne continues with a hypothetical situation asking people which is better for a broken leg or surgery: a going on a hiking trip, or using crutches & rest? It may seem obvious what the answer is, especially based on our own behavior: rest and crutches are the better idea. Otherwise, as Wayne explains, there would be mountain trails outside of hospital rooms instead of wheelchairs & gurneys. "When dealing with a broken leg, it [usually] heals and the person returns to life as usual." (Read the rest of the article here: http://usodep.blogs.govdelivery.com/2014/05/09/the-loneliness-of-illness-and-pain/)

But people who have an illness that hasn't healed, that can't heal, who are in the very throws of illness at this very moment are treated as if they're not sick at all.

On the other hand, for many living with ongoing illnesses, “as the illness progresses, [people] must adjust each day to the disease, sometimes severe, sometimes in remission, and always present. The sense of health and vibrancy is, at best, diminished, and at worst, lost,” wrote Jackson P. Rainer, Ph.D., a leading authority on grief and loss.

Another thing people think is that because we the patient are still having daily issues, that means that we haven't been about to "move on." Their thought is, "Wow, you have that and you're still alive? That's amazing. Don't you see how that's amazing? When you talk about your illness, you're right... but the only person you're hurting is you. I'm just so glad you're alive and I think we should focus on that. You just have to believe you can get better! You know just because you get a diagnosis doesn't mean it's a death sentence. You shouldn't believe everything your doctor tells you. I believe you can beat this!"

And when you try to explain that they've misunderstood what's going on, it only sounds like an excuse. They, of course, can see that you're still unhappy, but they've now convinced themselves that the reason for your unhappiness is a consequence of your own stubbornness. They then have a perfect justification for stepping back, or walking away, guilt free. We're only doing to ourselves, right?

They can't imagine a world where you get sick and it never goes away. They can't imagine not having control over simple things like going to the bathroom. After all, they mastered that as toddlers. Adults don't have those problems until they're old and decrepit anyway, and by that time, who cares? They fast forward through all those medication ads. They know we have hundreds of drugs to treat the same thing and even drugs built just for his pleasure. We're in the golden age of pharmacology!

Every medical riddle has an answer and a treatment that solves the problem---I watch House! The only people who keep having problems with their disease are people who aren't following their doctor's instructions and doing all they can do to maintain a healthy lifestyle! I don't need to feel upset about this at all. God is in heaven, and all is right with the world. Look at all these people who work hard and beat cancer!*

They can't imagine how little medical science actually knows. They can't imagine that their doctors probably have never had a class on pain; the chief medical complaint everywhere, always. They can't imagine there are symptoms for which we have no good treatment, no good source of relief for patients at all. They can't imagine that you could have possibly exhausted all options available. There aren't people in wards waiting for the medical breakthrough that will save their lives. We're past that!

Oh, but we aren't.

And what they cannot imagine is that our problems today might actually be problems from our success! Yes, we're not dead. But achieving that can leave us more scarred and more crippled than before our near-death experience. My experience with MRSA is a perfect example:

I got a surgery to end the 4.5 year migraine. That surgery caused an antibiotic-resistant version of staph to infect my face. I lost a good portion of the skin off my chin and on spots around my face. I still have the scars, some of them show up as white dots on my face. My chin is covered in tiny scars and it feels funny when you rub your hand over it.

That infection nearly killed me. The antibiotic left my veins so inflamed that they almost had to put a line into my heart to continue to deliver the antibiotic to me. That inflammation destroyed the small fibrous nerves that exist throughout my body. Anywhere the antibiotic touched, it burned. It burned the infection out of my system, and it burned everything else, and especially those delicate little nerves. Those don't grow back no matter how much yoga you do.

What fixed the migraines only moved the pain to other parts of my body (most conspicuously, my hands and feet) and left me crippled for another 5.5 years while we figured that one out.

Now that we've figured it out and have it manageable to a reasonable degree, an entirely unforeseen development has occurred, with no known source. It is not connected to anything that we already know of, because this wasn't in the forecast! And since we don't know the source, I can do nothing to stem the tide. I must now return to my doctors to start the investigative diagnosis process all over again.

It's very much like people's misconceptions about cancer, as I *'ed before... I'll leave it to XKCD to explain this one, as they did it best. (Used with permission.)

When we complain, we're not complaining because our illness is something in the past that we keep dragging into the present. No. For so many, it's something that's right here, right now. Not every symptom in the world is controlled, and as you can probably tell from some of those ads, many cause side-effects as bad as, if not worse than, the condition they're trying to treat! So if someone has to go to those lengths do try and manage what they have going on, don'cha think it might be... Oh, I don't know... Serious?

This is not to badmouth the people who really do mean well. However, those people are generally easy to spot. They say things like, "Wow, I didn't really consider that. This is new information for me so when you put it like that... You've given me a lot to think about, I'll have to take time to mull this over." Or even, "I really am trying to help, but this isn't easy so I don't have any quick answers for you." These are all reasonable answers. I already knew we were playing "Life" on "Level: Advanced" and my medical doctors are already at their limits, so I can accept that.

So please, if you hear that someone has gotten sick and can't get better, try blaming the disease and supporting the patient, rather than blaming the patient and supporting the dis-ease. We will be eternally grateful, even if you don't have any answers for us besides, "Man, F*** your disease." Profound respect for what we're going through is worth so much, that sometimes that expression of sympathy alone is enough to make us feel better.

Thank you for understanding.

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]

February #TweetChat with @WegoHealth

Here's a link to the topics and questions for Tuesday's TweetChat hosted by me, sponsored by WegoHealth with the theme: "In Sickness - Love & Chronic Illness"

You can download the PDF here to follow along: https://www.dropbox.com/s/9ujcc68d1ms11u0/WegoHealth%20Valentine%27s%20Tweetchat.pdf

Join us by going to TweetChat.com and enter the "room" with the hashtag #hachat for Health Activist Chat.

We will start at 1pm Mountain Standard Time, 3pm Eastern, this Tuesday. After welcome announcements are made, we'll start with the first topic. I will pose the question to the room, and give folks a few minutes to tweet back with their answers & respond to one another. I will continue by posing questions as laid out in the PDF until our time is up.

Be sure to spread the word and join us if you can! Everyone is welcomed, even if you're not a health activist, we want to hear from you!! Have you had to manage love and a chronic illness? Have you loved someone with a chronic illness? Are you the child of parents with a chronic illness? Sick, single, and trying to date? Please join!!

I look forward to seeing you there!

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!!

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.

Guide for Talking to the Chronically Ill -- Call for Submissions

How many times have you heard from your healthy friends and family that they want to show support for you, but "I just don't know what to say..."? Have you ever wished for a guidebook that you could hand to healthy people, so that they would know what to say? Well, I am working on exactly that.* And I would like your help.

I want to teach healthy people how to communicate with people with chronic illness. I want to teach them how to be brave, how to be supportive, and what we want to hear. If there is someone in your life who is having trouble knowing what to say, I'd like you to write me and tell me what you what to hear from them. The more stories submitted, the more options we can present them.

What would you most like to hear from your family?
What would you most like to hear from your friends?
What are some of the best supportive comments you have heard?
What are the worst things you've heard?
If someone wanted to approach you to discuss your condition, how would you like them to ask?
What do you wish people understood about chronic illness in general?
What do you wish people understood about your chronic illness, specifically?
What do you struggle with most, as a result of your chronic illness?
Do you want people around you to help? If so, how do you want other people to offer assistance?
Other thoughts? Comments?

Please say whether you would like credit, or whether you would rather remain anonymous. Feel free to submit previously written works, blog post URLs, etc. (along with permission to reprint).

Send your submissions to: pamc.writer(at)yahoo.com
Include your NAME (or Anonymous), CITY, STATE/COUNTRY
Your DIAGNOSIS(es), HOW LONG (you've been diagnosed), whether you're DISABLED (and DATE)
(Include links to your blog, Twitter handle, etc., if you wish)

Submission Deadline -- December 15th

*I've been gone from here working on this, and other fun surprises coming later this month!

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.

This Happiness Project

As a society, we've taught ourselves that if we're successful, we'll then be happy. But with each success, we then place the goal post out farther: I need a better job, better living arrangements, better car, better... whatever. And then we can never be happy, because we never get there. But now science has figured out how to turn that around. From a field called Positive Psychology, I bring you, The Happiness Project Facebook Event.

Based on the work of Harvard Psychologist, Shawn Achor, (http://www.ted.com/talks/lang/en/shawn_achor_the_happy_secret_to_better_work.html or see the video below) This Happiness Project is about using the latest methods of neuroplasticity to train our brains how to be happier.

There are daily exercises, as well as individual projects we're going to go over that you can do at home, all geared towards making a happier you in a month (though you can continue to participate longer if you wish!).

The Happiness Advantage details out how to take this journey into transforming our minds on seeing the positive, and the opportunities available to us. We can use this event to help each other, because building up new patterns of behavior (like eating well) is easier with moral support!

So this is a no-pressure event. If you miss an assignment, don't worry, just try again the next day. See how much you can do, and if it helps you feel better about your life. I want to keep this fun and low pressure. This is about happiness after all!

Here's This Happiness Project:

1. Say three good things that happened to you that day. Shawn alternates in the book between calling this "Three Good Things," and "three things for which we're grateful for," that day. Either one works. Do this every day, posting at the event, your timeline, or in a paper journal.

2. Blog or paper journal about one positive experience, past or present. Write for 20 minutes, three times a week. If you blog, share links here to spread the positive story goodness!

3. Meditate for 5 minutes, every day; just concentrate on breathing in and out. Meditate on something positive (real or imagined beach vacation) for 20 minutes, 3 times a week.

4. Exercise. (They say 45 minutes 3x/week, but if you have heath issues, be sure to go over any exercise plan with your doctor first.)

5. Do 5 conscious acts of kindness. This can include publicly showing your appreciation for someone else's hard work, paying $3 towards lunch of the stranger behind you in the drive thru, calling up customer service just to say everything is working and that you like your products, letting someone go ahead of you in the grocery check-out line, picking up 5 pices of trash in a public park, whatever... Do these 5 Conscious Acts of Kindness once a week.

Studies have shown that we need 4 positive to counteract every 1 negative. That means, for every awful story of despair on the news, you need four positive stories to balance out. For each negative comment you hear about yourself, you need to hear 4 positive comments to come back up. So, post things that help you with your positivity here, and that will help someone else have a positive story for their day! (Feel free to post anything that restores your faith in humanity, here. That could even count as one of your conscious acts of kindness!)

I'll also be posting other fun, uplifting, positive projects that they mention in the book, like: How to give your job meaning, even if your a janitor! How to have happy dreams about the future. How to help make those happy future dreams a reality. All sorts of goodness!

Anyone is welcome to join any time.... Stay for 30 days or stay for more!

Since some people have been eager to start,
Today I began the Three Good Things part of the exercises.

Here's the format. I'll make a daily "Three Good Things!" post some time in the afternoon. Remember, though, that it's good to wait towards the end of our day before sharing. When you're ready, reply to my post with your three good things that happened to you that day, or three things you're grateful for that day.

It's the act of remembering our day, and looking for the good things, and drawing those memories that is a big part of this. But sharing with others is also an important part.

In the book, it mentions how one powerful executive in China decided to share his Three Good Things with his family at dinner each night. Each member of the family participated, too. When the project was over, he didn't want to keep doing it. (In the book it explains why...) But his children then refused to eat dinner until they did the Three Good Things exercise.

It's not just what happens to us that's important. It's that we share it with others, too. This is what brings people together. When we share about good things, everyone's experience of goodness grows. We can actually experience the other person's happiness when they share, because we are then reminded of similar events of happiness in our own lives (or we can imagine such events and experience the happiness that way). Happiness magnifies happiness.

When you're ready, BEGIN! ^_^

Next: Tips on Building New Habits & Breaking Old Ones P.S. I will be blogging here as part of the event, starting August 1.
[Update]

I had to add a disclaimer... See, I forgot one little thing: the body doesn't care if it's good stress or bad stress. Both include a shot of adrenaline & cortisol. Basically he's exchanging a bad stress for a good stress. But if the problem is with stress itself, regardless of whether it's good or bad, then this system still incurs health costs. I forgot how sick I can get from *good* things happening. I can't lose myself in flow without being really cautious (which is kinda counter-active to flow, so....). While I cannot manage this! I still encourage those with healthier bodies to try!

Why I don't read other blogs... (Confession)

I've been thinking about it for a few days because it's been weighing heavily on my heart. Here I am, blogging away, getting all this support from you, and I have a difficult time turning around and reading what you---my fellow bloggers---have written. Oh, sometimes I'll rediscover Google Reader and go on a blog reading binge. But most of the time I don't keep up. And it's the same reason that healthy people have a difficult time talking to us: It hurts too much to know.

I want to be there for you, to help cheer you on, to lift your spirits up... I want to hear about how you're succeeding, because I want you to be successful in your life. I have trouble hearing about the struggle, pain, and heartache. I want to recognize and deal with that. I want to help. However, I want to keep my mind focused on the positive, and that's difficult to do when I'm reading stories about the negative.

And that's what's so difficult about talking to people with chronic illnesses! If we look at the illness, that's a lot of struggle, a lot of disappointment, a lot of heart-break, a lot to despair over... And for so many people where there's only treatment, never a cure... And for so many other people for whom the illness is just a fight to have it not kill you... I really don't want to hear about how an illness is overwhelming and swallowing up your life.

See, the problem is, I've been through that. When you tell the story of your pain, I feel your pain, I remember my pain. It all comes back in a horrible flood of traumatic memories. I can't handle that on a regular basis. It's too much. I have to be in a mood that feels like every problem is solvable, and I am mighty, before I have the strength to read other blogs. Otherwise, I could find myself awash in memories that then trigger me and leave me shuddering...

I want to hear about everything you're grateful for despite what's going on. I want to hear about how it's difficult, but that you're learning coping (or you're fighting to learn how to cope). I want to hear about how you're successful in dealing with your disease. I want to hear about the humor you've picked up along the way... I want to know about you---your hopes, your dreams, your inspirations. I want to know how your beating back the darkness.

I know about the darkness. I've traveled enough of its depths already. I don't want to know more. That's why I don't read other patient's blogs. It hurts.

Forgive me?

#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."

Mental Health Month Blog Party! Recognizing Good Mental Health

I know I said I was going to to a Twitter & Tumblr Roundup today, but I completely forgot that today was a scheduled blog party (#mhbogday) for the American Psychological Association! Their challenge: How can you help people recognize the importance of good mental health, overcome stigma, and seek out professional mental health services when needed? Well, first off, I think that mental health is something we shouldn't just consider when it's needed. Mental health is like physical health. We all participate in mental health exercises, we just take most of them for granted. We can enhance our mental health with training and guidance from professionals, no matter what condition we're in. And most people have a "non-serious" form of a mental health issue, and manage it successfully all their lives. There is nothing about mental health that we need to be ashamed about.

Like physical exercise, most people get their mental health from regular daily activities. We engage in routines and rituals that help calm us with their familiarity. We do our morning routine before work, we check off each item in our routine as we complete it, we head into our day knowing we have started off on the right foot by doing all we're supposed to do. This process is so unconscious that we don't even notice it. But when our morning routine is upset, when there's some emergency that interrupts us, boy can we tell in our mental state! Things feel discombobulated, we feel out-of-sorts. Our day moves forward, but we're a little on edge, because our morning mental routine was thrown. We become aware of how important this habit is to our mental health.

Similarly, rituals like birthdays or going to worship, also help us feel a sense of normalcy and a connection to the flow of life. We take these things for granted when it comes to our mental health, when we engage in them successfully. But we notice how much they help our mental state the moment we can't participate. Being too sick to enjoy a birthday, or missing mass that we regularly attend, can upset us deeply. This makes absolute perfect sense! We look forward to these activities! Marking milestones helps ground us in a sense of accomplishment; they remind us of the BIG picture. Rituals like worship and holidays bring tradition and the past into the present; again, they remind us of the bigger picture. These things comfort and console us. When they're present, they help our mental health. When they're missing, we feel it.

As with physical exercise, we can add mental health exercises to our lives to help bolster our overall mental health. Professionals can help by teaching us new techniques and giving us new tools that we can then use in our every-day lives. It doesn't matter what shape we come into walking through the door, they can help improve our mental health. At the very least, validation from the professionals that we're doing well is benefit enough! But what is true of most people (myself absolutely included), is that we've grown up the best we can, but we've picked up a few issues along the way. We may have gotten them early (like childhood), or we may have gotten them through just trying to survive life (medical trauma, Katrina, 9/11, death in the family, victim of a crime). There is no such thing as "battle hardening." Eventually, life gets to everyone. There is no shame in this. And mental health professionals can help us mend the areas of our life where we are wounded in the soul.

Mental health issues can be no big deal, like a fear of spiders. That's not to diminish anyone's fear of spiders! But a fear of spiders can be managed by avoiding them as much as possible, not watching films that use spiders as a theme, having your house or apartment spayed with a chemical barrier, etc. A "serious mental health illness" is a legal term (from the Department of Mental Health and Substance Abuse Services is in the link above), and basically means severe impairment. This affects less than 5% of the population. Most people who use mental health services, like people who use physical health services, do it for a condition that is manageable. Yes, flares can happen that upset the regular flow, but on the whole, the symptoms do not interrupt life. Non-serious mental health illness is just like chronic physical illness. Most people have it, and you'd never know it unless they told you. It is nothing to be ashamed about.

Me personally? I've mentioned here that I have PTSD from my medical experiences. I can have panic attacks trying to see a doctor. It's nothing personal: I don't like doctors. I've been treated horrifically, and I've nearly died twice: once from an adrenal crisis when my blood pressure bottomed out, and second, from a MRSA infection following my surgery. It would be abnormal to go through those situations, and not have it affect your mental health. So, yeah... I'm a little nuts. I'll own that completely.

I also have very rapid-cycling hypomania and depression as a regular function of my migraines. That's what happens when your body dumps its supply of serotonin from the brain and blood. The only thing I can do is hold on to the best of my ability until it passes. I have symptoms like a visual aura, and ways to watch my behavior, that let me know when these moods are coming on. I have tools I've learned, and management techniques I've picked up (never go shopping when in hypomania---everything looks like a good idea!) to keep me safe. I'm on a long-term SSRI medication (#headmed) that works well enough, but it certainly doesn't do a complete job. Hopefully Big Pharma and science will come up with some better answers, soon. Until then, I manage well enough, and things have gotten much better since I got pain control.

We are making amazing technological advancements in our understanding of the brain, and how it functions. From this, we are learning more about all ranges of mental illness, from the mild to the severe. Mental illness is nothing to be ashamed of, whether you were born with it (and therefore had no choice in the matter) or picked it up along the way (like a bad flu or a broken bone). It's not a sign of weakness. It's a sign of survival. It's the wide range of normal, human behavior. Our mental health is like our physical health---and we should take good care of ourselves! This includes check-ups with a doctor (even if it is just to tell us we're doing fine). We can raise awareness, and take away some of the #stigma, so that people who need help, aren't afraid to get it. Be proud of your mental health! We all have scars...

Patients are not teenagers

Oh, I knew this article was going to get my Scottish up the moment I read the title: Being a physician is like trying to parent two thousand teenagers. Pretty insulting, no? But a good article title should want to make you read more, and pissing someone off is a great way to do that. I knew the article would give examples that would justify the title, and the author delivered. But I also knew I would have a lot to say on the matter. The doctor is the one ultimately in control of these conversations. If they're going badly, it's the person behind the wheel who's to blame. Here was my reply.

I may have a solution for you. Bring them over to your side. You know your right. And they will come to understand you're right too, if you can give them a clear picture of what's going on in your head.

I believe your issue is not your patients but the communication you have between your patients. Right now, I see both sides fighting to get their point of view heard. With the exception of the drug seeker (good catch, by the way!! It's great that Illinois has a registry like that), what I see is that your patients don't feel in control. You are trying to explain to them why you're right and they're wrong. But no one likes a lecture. They may be acting like teenagers because they're responding to you *treating* them like teenagers. What I hear you saying is, "No... you can't have this and here's why." Instead, why not try inviting them along your journey of decision making?

When patients come to you, they're in distress and they're scared. Of course they don't know as much as you. So you're going to have to help them, and be very gentle and patient with them. You have the education, but they're the ones who ultimately have to pay the price. They're depending on you to show them the correct course of action. If they feel that your goals and their goals are different, you're going to have conflict. My suggestion is slow your conversations down---this is an emotional minefield, laden with hidden traps. It may feel like you have to simplify your conversations and say some things that seem obvious. But nothing is obvious when people are upset and in need.

First, let them know that your goal is to see them---your patient---happy and healthy. Next, let them know that you understand the decision is up to them. You're going to provide information, and then they get to make the choice (even if the choice is to go to a different doctor because you won't prescribe). Let them know that you understand what they want: "I hear that you want me to prescribe these antibiotics. But first, can I let you in on my train of thought?" Then explain how you see the situation, what the options are, and what you see as potential problems. You can say things like, "I would *like* to give you this, but here's what I'm worried about." Lay out the consequences. Let them know why you're so worried about doing what they're asking. When they have all the evidence, they'll be able to make a good decision.

When it comes to end-of-life decisions, you have to know that people are going to become unreasonable. This is End of Life.... the stuff Elisabeth Kübler-Ross won 19 honorary degrees about. There is one simple question I would pose to that man: "How would you like your grandmother's final days to be? Do you want her hooked up to machines, being disturbed at all hours of the night for this and that... Or would you like her to be able to rest and have peaceful days surrounded by her loving family? Do you want her to have to fight a battle every day until her last?" Let him understand what he's asking for. He has no way of knowing how difficult it is. You said as much yourself. Explain what the consequences are *beyond* extending life.

You know these people would make the right decision if they knew what you knew. What you've forgotten is how long it took you to learn those things. Your patients only have these few moments in your presence to learn what you know. You had years of hard work. It's not reasonable to expect them to understand like you do. And you can't blame them for being skeptical of your answers---our culture is one of "buyer beware." Different doctors do different things---if one doctor did it this way and you won't, you're going to have to expect to defend your decision. That's the way it works in any industry.

If you don't want 2000 teenagers, try to stop treating me like a kid ;)

When I read the article, all I could hear was, "I know what's best! I got all this education! They should do what I say!" Who likes to be treated like that? "Oh, thank you for asserting your dominance over me! Now I realize I am a poor, ignorant slob. I will do what you say without question!" Um... I don't think so.

Doctors, if you are in charge, then you need to take responsibility. You're saying that you know best, like a parent. You took all the decision-making away, like a parent. You treated their disagreement with your course of action like rebellion. And your surprised your patients end up acting like children? You're not treating your patients like adults. You're the one who put yourself in the position to act like a parent. There should be no surprise why you feel that way. Your patients are not the ones to blame.