"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 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!!

#NMAM Shakin' in my Boots

Todays' blogging question is: "What's your biggest Migraine related fear? How do you cope with it?" My biggest fear, easily, is that the migraines will come back with the same force and duration that disabled me in the first place. Even while on a steady diet of 60mg Oxycontin per day, I was still averaging an ER visit about once a month. Even after they implanted the Occipital Nerve Simulator, I was the only one in the study to use it past 8. The doctors were floored that I could tolerate it at max power of 20. I wished the machine had gone to 40, but that's reaching lethal levels.

When a migraine goes past 72 hours, I start to panic. That's how the last one started. It just started and would not stop. I could throw all the medication I wanted to at it, and it just went on, and on, and on. It varied in intensity. Some days were absolutely miserable, and those were the good days! Bad days were an epic hell that took every ounce of stubbornness and tenacity just to get through. If I can't get my migraine under control in less than 72 hours, I'm in real danger of falling into another epic cycle again.

See, my 4.5 year migraine wasn't the first to last a long time. By my blogging estimates, I believe I had a migraine the previous year that lasted 5 weeks. Around the same time of year too. I worked through the pain. I was a one woman drain on Cafergot. I had run out the supply in Washington state. I had run out the supply in Oregon. I had run out the supply in Idaho and, according to my pharmacy, I was starting to clean out northern California, when my doctor finally switched me to a different medication.

I didn't think any of that was abnormal at the time. Now I know different. Now I can see the signs of the tiger hiding out in the darkness, waiting to strike. And when the signs become numerous, and continuous, I start to freak like a tiger is chasing me.

How do I cope with it? Responsible denial. I deny that which I can't fix, and just try and slog through it, unless the symptoms become urgent or chronic enough to warrant care. When that happens, I'll shut down internally and go into pure intellectual mode. I'm in shock, and I'm trying to cope anyway. The feelings are to big for me to manage, so I shut them all off. That way maybe I have a chance to think. Unfortunately, the amount of adrenaline in my system, usually causes racing thoughts. So these are the times when I write and blog. It helps me get my thoughts together, and not just spinning out of control on a hamster wheel.

And I'm starting to develop some faith. Not traditional faith, but a kind of faith nonetheless.

But most of all, I recognize that my fears of a massive migraine phase is perfectly reasonable given my experience. My fears of it happening again are part of my Medical PTSD. So I also do therapy and take head meds.

And I try to tell myself the boogeyman isn't real and living in my head...

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

Myth Mugshot Contest -- Medical PTSD

The only real way to combat myths, misconceptions, & stigma is by raising awareness and sharing what is real: facts, stats, info, and narratives. This is exactly where Health Activists excel and align. No matter what your condition or health focus may be - you are dedicated to filling in the information gaps where stigma. That's why we've created the Myth Mugshot Contest.

So often, patients and caregivers are labeled (or at least feel labeled) by their health. Symptoms, diagnosis, treatment, and other things that go along with having (and fighting for) a health cause can open us up to judgment from others. But, at the end of the day, no one can label you - only you know yourself and what you're going through. Only you know which myths are myths and which misconceptions are outdated, off, or just plain wrong. But instead of dwelling on these labels we so often hear - we're doing something about it.

Let's play off of that idea by sharing what is real, true, and correct - and labeling ourselves with that instead.

This week we'll be sharing Myth Mugshots - where members of the WEGO Health team share one thing we think is true, important, and will affirm Health Activists and patients. Then, next week, we hope you'll do the same. Share a picture of yourself holding up a piece of paper that tells your truth. Think of a common myth, misconception, or discouraging thought and reclaim it by writing down something true or a fact about you, your health condition, health community, healthcare, or patients in general.

Now - share your photo! Add it to our Facebook wall and have your friends/followers "Like" it. The photo will the most "Likes" will get a feature on our blog, a highlight on our FB page, a feature in our June Newsletter, and a WEGO Health T-shirt (here's what they look like).

Looking forward to your Mugshots and seeing your mugs as well as your truths. Feel free to invite your community members to make one as well. We'll post our team Mugshots this week so you get the idea - and then you can start posting your pics next Monday, May 21st and having your friends "like" it. We'll pick the winner on May 28th.

I've written about Medical PTSD before. It's something that is very common among people with chronic illnesses. Too often, we are doubted, and our very ability to judge reality is called into question. We know from psychological studies done on other at-risk groups, that disbelief of our situation, of our struggle, caused depression, shame, and low self-worth. We become unable to view ourselves as in control of our lives:

"Our results show that perceptions of unfair treatment, like other chronic stressors, are psychologically burdensome... Many... suffer emotionally because they are unable to view themselves as efficacious and competent actors when treated with suspicion and confronted with dehumanizing interactions." Keith VM et al (2009). DOI 10.1007/s11199-009-9706-5

The easiest thing for a doctor to do is not treat. The shortest sentence in the English language is: "No."

When I'm not believed by a doctor, it's almost an instant panic attack. See, I sat alone, for years, in excruciating chronic pain. No one had to treat me. No one did treat me. And when my pain finally was treated, with an electronic device, I was the only one in the study to use it at maximum strength. My migraines could still shoot past what the device could do. I floored doctors with my ability to act as if nothing was going on, as they turned the juice up to 20 milliamps of current, direct to my Occipital nerves. They could make me go back there again, simply by saying, "No."

Doctors are the gatekeepers to treatments, advanced medications, and nearly all methods of symptom management. They mean the difference between living life, and enduring torture. Plain and simple. Is there any wonder, then, that chronic illness patients are walking around, traumatized?

One of the therapy methods for treating PTSD, is re-establishing the patient with a sense of safety in their own body. Chronic illness patients don't get that safety. It's our own bodies we need to be saved from! To quote a pretty hard-core rap song, by Rage Against the Machine, "There'll be no shelter here --- the front line is everywhere."

And other things have happened. Things I still have trouble writing about. I was hurt. I told him to stop, and he didn't. No one else in the room stopped him, either. My screams were heard three floors down, in the pharmacy. They almost needed pliers to remove the needle from my skull, he dug into the bone so deep. No, it wasn't sexual rape. But it was a violation of my body, all the same. It's perfectly normal to be a bit bent out of shape around doctors after that. Other people have stories like this, and worse.

I tried for years to ignore just how badly I was traumatized. But it came out in my behavior. It come out in an overwhelming sense of doom, that would leave me paralyzed and speechless. It would come out when small things when wrong, and I'd freak out like the world was ending (because, for me, it had been close to true too many times). I would assume I was inadequate to meet the challenges of the situation, and navigate them safely, because too often in the past, this was correct. It wasn't until my brother pulled me aside, and identified it as PTSD, like his military PTSD, that I realized what was going on.

Even still, it wasn't until my health was on the line (again) and I absolutely had to go back to the doctors, that I sought out treatment for my PTSD. I tried to do it on my own at first. I made it through the doctors appointment. I was polite and did everything right. Then I lost my $#!+ in the parking lot, after returning to my car. I broke down in near-hyperventilating tears. Nothing in the doctor's visit had gone wrong! But I was still inconsolably freaked out. I knew then, I had to get therapy before I started trying to do this again.

Things have gotten much better since then. I'm on medication, (or what I like to call #headmeds) which has helped significantly. I'm on a long-acting anxiety medication, and I have short-acting anxiety pills for breakthrough panic episodes (now fewer than 3/month!). I have my symptoms managed, and my success with doctors over the past year is not small feat (including withstanding an awful situation at the University of Colorado). Talk therapy, including EMDR, had a lot to do with that success. The doctors and counselors over at Boulder Mental Health Partners have done a wonderful job. (And it sure does help that they don't have stuffy medical offices and don't wear lab coats!)

I will have this the rest of my life, no doubt. But as I get older, those wounds will heal. I can still be triggered, but as time goes on, those triggers should fade. There is always the possibility of future trauma, but that's true of any human activity. I will face the situation as best I can, and worry about picking up the pieces after. I don't have to try to anticipate every possible bad thing that might happen. I'm capable enough to be able to think things through in the moment. And if I'm overwhelmed? I can always return to therapy.

PTSD is very real. And you don't have to have been in the military, to suffer from it.

Happy Birthday, Make This Look Awesome!

Happy birthday to my blog! It's been one year since I've started blogging, and what a year! I started this blog as a woman hopelessly lost, and looking for answers. I was in chronic pain: an aching, burning, and hyper-awareness of sensation in my hands and feet kept me crippled and miserable. I hadn't exercised in ten years. There was no cure for what I was going through, and no one seemed to be able to help me. So I decided to turn things around, and teach other people how to go through my situation. I asked myself, "If I had to help someone like me, what would I say?" And I started writing...

Since then, it's been miracle after miracle. I thought I was alone, which was a reasonable thing to believe. There are only around 350 of us with this disease. How difficult was it going to be to find another person my age with this disease? Someone who I could talk to and compare notes with... There are over 900 million active users on Facebook. That's like looking for a needle in a haystack of needles! And then I found my Unicorn Sister... a woman my age, with all the same symptoms, down to the elusive pain that was being dismissed by all our doctors. I was no longer alone, and when I wrote my blog entries struggling with my life, she would write me little notes, like, "I feel like you're inside my head, writing just for me." Oh, how that warmed my heart and made everything awful I had been going through worthwhile!!

I also had several things happen, which I though I would never see in my lifetime. A CURE!!! My disease is rare. There aren't fancy ribbons or marathon walks for Autoimmune Hypophysitis. Most of my doctors had never even heard of it until I walked in their door. People with diseases like mine don't get big, fancy, superstars like Venus Williams (Sjogren's Syndrome) or Lady Gaga (Lupus) to speak for them. We don't have collection jars next to the cash register. No one cares! Why should they? Cure cancer, and that would affect millions. Cure Autoimmune Hypophysitis, and that's maybe 400 people. I thought I would die of this disease. I thought it would be the eventual cause of my death. And then there was a cure: Two small observation reports (because there are even too few patients to have a study) showed that a combination of azathioprine and advanced steroids for 16 weeks, eliminated all traces of my autoimmune disease.

I was having trouble with doctors back then. First, I couldn't get an appointment to see the specialist I needed. Then, after seeing the local specialist, I ran into a lot of trouble. She didn't believe I had my disease, and thought that if I were to come off my medication, I would be fine. I had further problems where the tests that were supposed to be ordered, never were. But even after tests were completed and showed abnormal results, she still refused to believe I should be on any medication. I thought I had reached a dead-end. I tried going to another doctor at the same clinic, but she was a fellow, and this other doctor was a teacher, so not much happened there but more friendly stonewalling.

But then, my old endocrinologist---the one who had seen me during my original diagnosis---she got promoted to head of neuroendocrinology at Swedish Hospital in Seattle. As I told my roommate, "I couldn't have wished for better!" I knew I had to get back to Seattle, and I had no idea how I was going to afford it, but then all my followers pitched in, and I was able to go. I was able to meet with my old doctor and establish myself as a patient of hers again. She hadn't heard of the cure, but she's in the process of researching how to go about doing it, right now! She found one of the authors at Stanford, and she's waiting to hear back from him.

In the meantime, Dr. Broyles reminded me that I had an old MRI in my file, that if the neuroendocrinologist had just bothered to look at it, she would have seen my pituitary inflamed, and I possibly wouldn't have had to go through all that trouble of trying to prove I-had-what-I-said-I-had. I'm still working with Hospital Administration at CU on that one. I'm also working with hospital administration at a different hospital, for missing two 7mm kidney stones, and misdiagnosing me with PMS. Whoops. That was a huge ordeal that I'm still trying to manage (I need to get me a better way to tip upside-down). I'm also waiting to hear back from the Stone Center of the Rocky Mountains to see what sort of diet changes I can do, to prevent them reforming in the future.

Finally, and certainly not least, I got pain control!!! This was another big one that I thought would never happen in my lifetime. For one, narcotic pain killers just aren't that good at killing my pain. They work wonderfully on some things. But for the daily pain I was experiencing, they were terrible. I could get overwhelmed by the wooziness of the narcotics, and still be feeling that impossible burning in my hands and feet. Narcotics didn't so much take care of the pain, as they did not make me care about the pain. So, even if my doctors were willing to give me narcotic pain control, I knew it would always be incomplete. I knew it would always hover there in the back of my consciousness, no matter how blotto I got. I had hope of maybe finding a sweet spot where the pain wouldn't cripple me and the medication wouldn't either, but that meant getting approved for long-term narcotic care. Not something easily given in this day and age.

My GP started me up on Neurontin again: last time I had used it for the migraines, and it had stopped working altogether. This time it was for the nerve pain, and it seemed to help some. But I did have the scary experience of my first seizure, when I made the mistake of trying to ramp down too quickly. That, along with another medication, kept me going enough so that I could keep going to doctors. I went to a neurologist, who was finally able to diagnose my pain as small fiber neuropathy. That diagnosis, along with steps I took myself (willing to do physical therapy), finally got someone to take my pain seriously. The first pain clinic I went to was not able to treat me, but I was able to find another clinic, and there I ran into the wonders of methadone. It was like someone attached a light switch to my pain, and simply turned it off. Nothing short of a miracle.

Throughout this all, I have been involved with counseling to help me with my Medical PTSD. I'm terrified of doctors, because I've had some very bad things happen to me at the hands of doctors. The greatest of which was a MRSA infection, which almost killed me in 2008. Through counseling, medication (#headmeds), and progressive success with my doctors ("progress, not perfection..."), I was able to really bring my anxiety under control. Oh, I still have my moments... but I know that they are moments that will pass. Even though my body is not a safe place to be, I can still manage it well enough that I know I can make it through. Though I may experience catastrophic moments, (like an adrenal crisis while camping), I've got the skills and support where I know I'll survive. Yes, I am going through life experiences that are terrifying. It's reasonable for me to lose it every once in a while. So long as I don't lose it on anyone else, that's okay. I can be calm in my doctors appointments, explain myself so that I'm heard, and get the treatment I need. If I run into a doctor that refuses to treat, it's not the end of the world. I can start over with a new doctor, and eventually find someone who can help me get better.

I didn't entirely believe that I could get better at first, but I carried that belief with me, until it came true. I was hoping for enough pain control, and I got even better. I was hoping for management of my autoimmune problem, instead a got a cure. I was hoping to deal with the loneliness my disease, instead I got a sister to share with. I thought I would struggle to return to work, and then I found I'd already started my life's work, right here.

Ya know... I think I might just stick with this blogging thing. It just might be good for me! ;^D

Thank you for joining me in my incredible year.

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...

#HAWMC - Book quote inspired post: I am a caveman

"[Your body] is an antique biological machine that evolved in response to a world that no longer exists." (The Time Paradox) Today's prompt is use a sentence from the nearest book as inspiration to write, free-form, for twenty minutes. (I cheated a little and went over on time, and didn't quite do free-form. But that's because I love this book, The Time Paradox, and I wanted to do it justice. It explains so much about how difficult it is for out little human minds to wrap around reality. My body's design hasn't really changed in the last 150,000 years. My environment, however, has changed drastically---largely due to our own efforts! My analog, caveman brain is in a digital, machine-driven world. Let the comedy begin.

For example, did you know that it's actually impossible to live in the present moment? That's simply true because our nervous systems lag behind what's actually going on. It takes time to see, hear, feel and process all those other wonderful senses---from 10 to 250 milliseconds, in fact. My organic brain is designed to anticipate, because that's the only way we can function in the world when we're always lagging behind. However, this is where everyone gets tripped up. What I anticipate is a story I've made up in my head, to try and predict the future, based on my past experiences. It's still a story. Reality is often painfully different. And if, say, I have an extremely traumatic past experience, that can cloud my judgement of the present moment, because I can now anticipate a terrible future that I didn't know existed before.

Further, I can become so wrapped up in avoiding that potential terrible future that I end up sabotaging myself in the present moment. In my anxiety and attempts to make sure that trauma never happens again, I can in fact create the very situation I'm trying to avoid. I anticipate that someone is going to be mad at me, so I get defensive. But then the person does get mad at me, but it's because I got defensive. They get confused because they don't think they've done anything to get me so worked up. And they're right! I'm jumping to conclusions and trying to anticipate moves. But in doing so, I force the situation to take a certain shape; a shape the other person may not want at all!

If I actually want to respond to the situation as it is, and not how I anticipate it to be, what I have to do is slow down, relax, and observe. My caveman brain is trained to look out for the tiger, find food, survive the elements, and maintain my place in my community/family group. I don't have to worry about predators like my caveman ancestor did. Finding food is as easy as going upstairs to my refrigerator. We don't just survive the elements anymore: we make fashion statements with our clothing. My community/family group is scattered across the country. Is it any wonder then, that I sometimes feel isolated, and adrift in a sea of strangers? Is it any wonder that I struggled a long time for a sense of purpose? Is it any wonder that I startle myself and see danger that isn't really there? No... But the awesome thing is when I change my perspective of a situation, I can change my response to that situation. Instead of making driving a competition with me and the other cars on the road, I can instead envision that we're all being carried on one big river, with different currents, and it doesn't matter if that guy gets in front of me. We're all part of the flow.

From an objective point of view, "bad" things are always going to happen in my life. I can't always avoid them. However, so far, I've been able to survive, despite it all. So I should give myself credit for being able to handle these situations as they arise, rather than always being on the defensive. I can do that with my doctors too. It's absolutely paramount that I treat each new doctor as new, and not a repeat of times past. Instead of anticipating for the bad experiences I've had, I can treat each doctor as a brand new opportunity for success. And by doing so, I'm being more fair to them, treating each doctor as an individual, rather than judging them as a group.

My caveman brain wants to make these associations to keep me safe from encountering the traumas of my past. But I'm a stranger to them. When I act defensive, I'm not giving my doctor a fair chance to do right by me. And I want to be as open and honest as possible. One, that helps them learn what's going on in my body more accurately. Two, it's the only way to build that all-important bond of trust. We may be all civilized and technologized, but human relationships still come down to primal rules that existed long before we built cities. Integrity still boils down to saying what you mean, and meaning what you say, backed up by proper action.

Like no other creature on this planet, we have changed our environment to better serve our needs. All animals change their environment to some extent, and a lot of animals do it with a purpose, just like us (building traps for prey, building shelter, nesting, etc.). But no other species has done it with such understanding of what we are going on about. We have taken the reigns of our fate as a species, and changed how we interact with the world. We live according to a clock, rather than the setting and rising of the sun. We are able to treat disease and strengthen fragile bodies that would not survive otherwise. But underneath it all, we're still just animals. We all have animal reactions, animal irrational behavior, and animal weaknesses. I have to remember that if I'm to successfully take responsibility for my life.

When everything falls down, it's an opportunity to rebuild

Ishvari - the Hindu Goddess of Never Not Broken

This one is kind of long, bear with me... I've noticed a lot, with myself, with the people I've counseled, that we have a tendency to rush through solving uncomfortable problems. It's not just habit... We came to this process for a reason. It makes for a quick resolution so our lives don't have to be interrupted horribly. We tend to forget, however, what we're feeling in the first place. We simply say, "I'm feeling X. X is bad. I need to stop feeling X." Wham, bam, problem solved, right? Except that we've forgotten one key step (and I forget this all the time too...). We forget to check to see if the feelings are reasonable, if they're warranted, if it's not just the feeling we need to solve but that there's a larger problem going on. "I'm feeling pain. Pain is bad. I need to stop feeling pain." This can quickly turn into managing a symptom while a larger problem (the one causing the symptom) festers and grows into a crisis. This is true for both physical and emotional feelings.

The one where this stands out the most is fear. "I'm terrified. Terrified is bad. I need to stop feeling terrified." Sure. I agree. But let's also stop a minute, after the terror has been addressed, and look at what got us there in the first place. What caused the feelings of terror? It may be perfectly reasonable. They may not be constructive feelings right now, but we didn't get to this line of thinking because we were delusional. We got there because we've had bad experiences in the past, and this one is starting to look just like that one, and OH MY GOD GET ME OUTTA HERE!!! WE'RE ALL GONNA DIE!!! This is usually diagnosed as Post Traumatic Stress Disorder (PTSD). They call it a disorder, which by their book is true. But that doesn't mean it's bad. We obviously survived that god-awful situation that made us twitchy. We did something right... Is that really a disorder or the voice of experience? So who am I to say that you're not exactly right that this situation looks like it's heading that way? But is that actually where it's heading? Are we sure?

If we drop a brick from a 60-story building, does it necessarily hit the ground? No. It may hit a balcony on the 32nd floor. Someone could stick their head out the window at just the wrong time. It could land on a truck driving past before it hits the ground. Just because the brick is falling, doesn't mean it hits the ground. Just because I know it could go hell-fire-fury bad, that doesn't mean it must go that way. And even though I see the possibility and the possibility terrifies me, I need to remember that I'm not going into this, without experience and wisdom. I'm a medical veteran. Some folks are actual veterans. We've been the dark places, have been broken to serve a horrible necessity, and come back to try to fit ourselves back into normal society, where people can't even imagine what we've seen. That's lonely. But you're not alone. You're elite.

Much of the problem I see is that we don't always recognize our successes. We take our successes for granted: why keep working on it if it worked? On to the next one. We remember the failures: if we're going to avoid it in the future, we've got to beat ourselves up right good so this never happens again.... That can easily lead to a lot of sleepless nights and poor self-esteem, quickly. Mommy clapped and cheered the first time we tied our shoes. We were so proud. Do we still clap and cheer each time successfully tie our shoes? No... we've got this one in the bag. We're an old hat at it. No need for praise, I know I'm a champion shoe-tier. It's when I'm not sure of my skills that I want the reassurance and the recognition.

I don't want you to hear, "I'm sick! I'm sick! I'm sick!" all the time. I want you to hear, "I'm dealing with something new and scary that even my doctor, the professional, can't tell me about very well... I'm scouring the internet because no one can tell me what's going to happen to me, and everything I thought about the world has been turned upside-down!" But that's a mouthful, and it took me over a decade of research to realize that's what I've been trying to say this whole time!

And though it may be silly, I've taken to rewarding myself, like I was when I was a child, when I'm able to do things that I normally can't do because of my illness. I'll clap and cheer, by god. Yes, I was an old pro at that... under healthy body conditions. But now I'm going at this on the expert difficulty levels, so there's going to be a learning curve again. Things aren't going to come as easily. It's going to take more work for less payoff. In some cases, I'm going to have to come up with an entirely different game plan, test it out, and find what works by trial and error. So it's doubly important that I recognize what an achievement it is. It looks the same as the million other times I've done it, but the experience is not the same. Getting through it wisely is what makes me mighty.

Comparing me to a healthy person just isn't fair. To the healthy person! Sure my young friends can run around and hike and zip and play on the mountainside. But they crash for naps afterwards, while I paced myself and could enjoy the whole day. I'm also an expert at functioning when I feel like crap. Their first instinct is to fall out. Mine is, "yeah... what else is new?" So as they sleep, I'm able to have the place all to myself. It goes back to the old Einstein quote: "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

Sure, based against most human activities, I'm no good at those. But put me in my element, and just watch me soar. I never lose my abilities to handle a crisis or keep going when it gets tough. They sleep most of the time, because "my element" are moments that don't come often, and thank goodness for that. I wouldn't want everyone living in my element. That's just too rough. If my being sick means someone else doesn't have to go through this, I'll take one for the team, no problem.

Too often I think we forget this big picture. We forget that it's reasonable to feel scared and abandoned and inconsolable and all that... Just because we'd rather not have those feelings doesn't mean they're always something to be avoided. Sometimes they're things we need to embrace as part of the process. They're important feelings, and they're uncomfortable so we'll take notice of them! But these bad feelings don't have to be the end of the story. They can be a simple chapter in a long book that ultimately ends up well.

All heroes go through hard times. But because we're the audience, it's easy to say, "Hang in there! you can do this! Success is right around the corner!!" But we're not in it. We're on the outside. It's a different story when we're trying to be the hero, and it all looks lost. It's easy to lose heart in the fight. Because some days it difficult to tell if we're in a tale or triumph, or a tale of tragedy.

It's okay to feel scared, hopeless, abandoned, etc. It might not be fun, but it doesn't mean eminent death (I hope!!). What we can do is slow down and take a look at the feelings. What started me feeling this way? Why am I anticipating that it's going to be like I'm imagining? Where's my evidence? Okay, which of those pieces of evidence are valid, and which are not? Which are pieces of evidence that could possibly mean more that one thing, that I need to watch and get more information on? What could possibly change to steer this situation in a new direction? Can I make adjustments to help the situation have a more positive outcome than the time that scared the bejeezus out of me? What are my options here?

What we may find is that we're absolutely right! We have been abandoned. It is a hopeless situation. We are scared out of our minds with good reason. But that doesn't have to stop us. So we've been abandoned. That doesn't make us unworthy or unlovable. So it's hopeless. That doesn't mean we don't give it our best shot anyway! So we're scared out of our minds. It's SCARY. You're having a human reaction. That's normal and okay. It's what you do with that, that counts.

The abandonment may have had nothing to do with us at all! Sometimes it happens, and it's sad. The one the you wanted with all your heart may have abandoned you, but they may not have been able to see a good thing when they had it. And if they can't appreciate you, why bother? The abandonment may have been a gift. Or the abandonment may be temporary: the other person needs their space because they're overwhelmed and they need to leave. Sure it hurts. Absolutely. But we keep ourselves. We can help that hurt go away. We can give to ourselves what we wanted them to give to us, and in that way we're able to get our needs met enough. Abandonment comes in all forms. Whatever the form, the answer is the same: Use that time to nurture ourselves so that we can be ready, whatever the future brings. Yes, we're lonely, but we can remind ourselves what we love about ourselves, and in that way remember why we're worth being kind towards.

We may find ourselves in a hopeless situation. There are plenty of medical mysteries that baffle doctors and end up as tragic tales of suffering and death. If you were sick with one of these diseases and not depressed, I would wonder what's wrong with you. It's normal to feel upset about being sick!! Good lord, you "normal" people have no idea how much you whine when you get sick. You think we whine? Dear lord... If I had a tape recorder, you'd sing a different tune! Lol. I see it in my Facebook news updates. The chronic illness folks only complain when it hits epic levels. Healthy people complain at the first sign of symptoms. "Sniffles and sore throat. Oh, man, I hope this is just seasonal and I'm not getting a cold." Compared to, "Had to go to the ER again last night. Thankfully it was only a 4 hour visit." It's two completely different worlds. You can't compare the two situations or even call them similar. So we shouldn't berate ourselves, on either side. Don't judge a fish on it's ability to climb a tree.

We may find ourselves inconsolable. That's okay too. There is something to be said for allowing ourselves a complete and total breakdown. Sometimes, we just hit our limit and have to stop and rest. When we do, all the emotions that we've been pushing aside because we've been trying to Get Stuff Done, come rushing to the surface. We break down. We feel weak and vulnerable. We may feel, because of all this, that we've failed or we're not up to the task. This isn't necessarily true. It may just be that we've hit our limit and need to rest. We need to take a break and concentrate on something else for a little while, because we're frustrated, feeling hopeless and trapped, and it's driving us crazy. None of that means we're weak or inadequate. No one can stand on the shore and hold back the tide. If you judge a fish be their ability to climb a tree... It means we're human animals and we just found our threshold! Like the govenor on a car engine, we can press the gas all we like... the car is not going to go faster. It's okay to allow ourselves time to stop, rest, think things over without pressure, and try again later. Life and love are marathons to be endured, not a race to be won.

Too often, I feel, we find ourselves in these situations where we're overwhelmed and trapped, where we've run into some life problem that no one could handle but we have to anyway... and we end up feeling miserable at ourselves. The situation was traumatic. So our brain holds on to it, ruminating and going over the scenarios again and again in an effort to try and keep us safe. It's obnoxious at best, and life-crippling at worst. We need to protect ourselves from that ever happening again!!! And because we felt couldn't protect ourselves, couldn't protect our friends and family, we end up feeling like we don't deserve to live. We feel like a failure as a human being. We feel like because we didn't feel brave, strong, or powerful, that we can't handle it it if happens again. This isn't true.

Just as bones can be set, mended, and made strong again, so can our sense of self. We will never again be the person we once were (neither are bones after they're broken), but that's okay. We made it through. That situation wasn't the end of us. And that situation may define us, but we get to choose the definition. Broken? Sure. I'm never not broken. But there's a Goddess of "Never not broken" and she seems pretty cool to me. She rides the back of a crocodile, and she is a warrior goddess. Like the line from the Modest Mouse song, Dashboard, "Oh, it should have been, could have been worse than it had even gone...". The things that I have been through should have ended me. But they didn't end all of me. This is an chance to create a new me that's more of what I like and less of what I don't like. When everything falls down, it's an opportunity to rebuild.

Medical PTSD

It was my brother, an OIF Veteran, who recognized my behavior pattern as PTSD. "Pam..." he said to me very gently, "you react to things just like I do." It was if the clouds parted and suddenly everything became clear. I had PTSD from my medical experiences. I've gone into details with my counselors and one close friend who also understands PTSD first-hand, and that has helped a lot. Each of us has it from a different source, but if you change the words around, the situations are the same. The feelings are the same. The panic about doing things that could potentially help you... Being so overwhelmed by something so simple that you freeze and shut down. Wanting to run and not knowing where to run to so just vibrating in place. Yeah... it's real. It's crippling. It's a disease. Right now, I need to face having an MRI, and I'm terrified.

I'm not claustrophobic. Nothing that straightforward. It's not the medical procedure itself. I'm actually worried that the results will be negative. They're always negative. But that's not unusual for my disease. From what I've read this disease only presents on a scan about 50% of the time. I'm worried that this is going to be used against me for the purposes of denying me care. "You're just crazy. You need to come off your medication and you'll be fine." That's what the last doctors said. That was based off of test results that every other doctor has looked at and said, "No, that's an abnormal response." But they're not the doctors taking care of me for this...

I was told so long for a child that I wasn't sick. That I just needed to try harder. Then I get really sick and find out, "You should be in a coma. I don't know how you're up and walking around!" Well, this isn't far off from normal for me, doc. This isn't that bad. What do you mean I'm a death's door?

It was tested by three different labs. One was a cardiologist. One was the Navy. One was an endocrinologist. This was over a 6 month period. I was later retested in Everett and Seattle. I was retested in St. Louis. I was retested here. All of that should have meant something. But it didn't and she wan't listening to me when I told her I was getting sicker without the medication.

Now it's an MRI and I'm betting that it's going to come back clean, and these new endocrinologists are going to start singing the other doctor's tune: you're fine. You're just delusional. None of those symptoms ever happened. All of those previous doctors didn't know what they were doing. Stop bothering us, kid. You're not that sick...

Really? I landed in the ER with a blood pressure of 80/40 from vomiting and that was just what... Magic? That's not an adrenal crash? I just don't know how to vomit properly? Please enlighten me so that I may do these things the right way and not waste your time.

But I can't say any of that, now, can I? The easiest thing a doctor can say is, "No." That's the shortest complete sentence in the English language, by the way. No. No, we don't think you have this disease. No, we're not going to give you access to treatment. No, we don't have access to the antibody test that would show your disease. No, we have nothing left for you. Whatever it is you have going on? Not our problem. Go away.

And then what do I do? Do I go back to my old doctors who diagnosed me? They're in Seattle and I'm in Denver. How do I accomplish this? Can I even muster the strength to try to see this through? Do I give up on this side of it for a while and instead concentrate on the small fiber neuropathy?

Oh, and that 50% chance it may actually show on my MRI? That feels more like 0.000005% of a chance. I though the abnormal blood tests would be enough, but apparently not. So now I don't know what it will take, and that's terrifying. I thought I had a leg to stand on, but the ground gave way beneath my feet.

Well, here goes. Off to the appointment and we'll see what happens on the other side.