Psychology School (Pain Psych)

I'm just a soul whose intentions are good...
Please Lord, don't let me be misunderstood..."


So I reached out for some support services recently and made and enormous discovery: psychology does not understand chronic pain patients. Like... bad. Bad, bad.

I mean, you've seen in past me rant about how awful some of the literature is and there are things I would DEFINITELY NOT say to anyone in our circumstance. But I had no comprehension of JUST how bad it was. I met a woman there who had similar troubles for her stomach cancer. They didn't know what to do with her either. Thank God I had organized my thoughts here years ago. We were able to counsel each other.

So I need your prayers. I am attempting and have completed the first steps for a certificate in pain psychology. The need is just too great, and my ability to explain these experiences eloquently has always helped professionals.

Well, now they need to take me seriously. Because people are dying over this stuff. I've seen it on the reddit boards. The Opioid Crisis has pushed so many people off their meds that the suicides are skyrocketing.

It needs to stop.

I'm volunteering to try and stop it.

Wish me luck...





p.s. Apologies for the extended absence and faulty restart. It's been a rough time and I needed to hermit rather than spread my behavior around publicly. I was just too angry. I was frustrated with the problem. NOW, I get it. THEY don't get it. They think they do and they are oh so wrong, and have been wrong since Elisabeth Kübler-Ross, bless her soul.

I needed this experience to know what to do next. It's been a rough time, but I'm back.

Thank you all for remaining.

Verifiable Neuropathy Symptom

Quick update: #goodnews! Thanks to a very observant medical student in the ER this morning, I finally have the doctors takig my small fiber neuropathy serieously. This student discovered I have a rare, easily-observed symptom, and one that NO ONE can fake! Even though my main complaint of my nerve damage in a stocking-and-glove pattern, we've long known the nerve damage is throughout my body. One effect is I have vision problems that cannnot be corrected with glasses or surgery. What we didn't know is that you can sometimes see my pupils flutter rapidly when you shine a light in them. It's a symptom that is impossible to fake, cannot be induced with drugs, and is a clear sign of nerve damage. As a result, not only did I get pain relief in the ER, they also put me on a fast-track referral! (I'll have an appointment this Monday or Tuesday.) Merciful heavens, they also gave me medication to be out of pain until then.

Thank you everyone for your prayers and well-wishes! They were answered!!

The System and Dr. Ruan

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

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

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

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

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

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

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

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

"Why?" You ask.

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

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

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

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



Welcome to reality.




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

Problems of Success, Success of Problems

I was in the hospital for three days when my four+ year migraine first lasted a week. I was put on IV-DHE, and for thirty blessed hours, my heat went from level ten to Zero. It was a miracle, and that first success fueled me for the next four years. I knew it was possible, so I could get there again. Oddly, however, when my head pain went away, a whole new pain came back, one that had been completely overwhelmed by my head pain to the point I didn't notice it. It was a wound left over from a three-day course of high steriods, and man did it hurt now! This is what we call a problem of success, and I'm going through one now.

The success is that I'm in remission. The migraines have been fewer, and I'm much stronger on no prednisone. My body can react in the moment to stress, instead of getting a full dose of cortisol in the morning and a shot for When Things Really Get Bad^TM. It's nice to have peace of mind knowing my body Will take care of itself.

Only, my body is taking care of it self and it's much LOUDER ABOUT THE PAIN! Ugh. I can only laugh, really. My grandmother had a saying, "Life is NOT for sissies!" And boy howdy was she a trooper! I can only hope to life up to her performance, nevermind the performance her mother did. (I let you all in on my inner thoughts so that maybe, through my struggles, you can find some peace of mind that you're not alone!) I've got some work to do, that's for sure.

But then a heap of problems can also bring about unexpected success. I, for one, was a horrible speller growing up. I hated vocabulary and was often teased for my phoenetic spellings. Today I was trying to spell filet mignon for a story I'm working on and was delighted to discover I'd stuck in an extra 'i', but besides that, I got it right! No reversed letters, no mis-heard vowels, and the next time, I had it right for sure! Such a good feeling to triumph after a long struggle. Each milestone counts.

And I can remember that works for struggling with my body, too. There are moments when the conditions are right and I can move without thinking about it, when it doesn't hurt all over. If, with the help of my doctors, we can find the right combination of chemicals to set my nervous system straight, chemicals that don't interfere with my mind but instead improve my abilities, then I am thrilled to do the work. I am chomping at the bit to be able to work and connect myself with the world again.

I despair being caught in a cage, whether my body or my apartment. I have someone with me now who can help me reconnect (because he wasn't disconnected like I was). I have skills I want to use to help communicate complex ideas in language that helps everyone understand, and I love dealing with engineers and quick-minded people. And I know that this is not drug seeking because there are whole classes of drugs that I won't take: benzos, ritilin, anything that affects my norepinepherine levels including what they put in novocaine nowadays (I learned that one the hard way). Including not too many opioids because it causes me to sleepwalk. I've left a building dead asleep, no thank you.

I'm a tough nut to crack, but I'm willing to do the homework to get me back on track. Setbacks will come, and new solutions are often required. It takes perserverence to overcome the insurmountable. We don't know success is on the other side, but it certainly isn't here, so let's keep marching... With all this $#!+, there's a pony around here somewhere!

There will be problems and there will be success. Much like energy and mass, they are completely interchangable.

More Than One Right Answer

I was asked the other day how I keep my faith (in a God of my understanding) when I've had so much happen to me. A friend was trying to play the "Have you tried" game with my migraines. I gave her a few tries & then I explained, in order to be considered a candidate for the experimental ONS device, it had to be show that I had vigorously tried every available option in 2007 and have it fail. I was among a handful of people arcoss the country allowed in. And that's when she asked me, how do I still have faith?"

It reminded me of a time when I must have been four, and the whole family was playing a game of I-Spy. We would get the color, and the first letter of the name of the object, and then we had to find the thing my parents had in mind. They had said, "Red, B!" And I had come up with "Red Ball," which was a piece of a toy I had, not the whole object, but I figured it was close enough. My answer surprised my parents, and they had to admit, yes, I was just as right even though I hadn't found their answer.

There are more right answers out in the world than are available to me. When I was a part of that study, it was one of those miracles of luck where all the right people are in the right place. Oh, that doesn't exclude one really bad apple from being in the mix, and in charge... But still personal miracles can happen despite even rotten folk.

There is so much more going on out there than any of us are aware of, good work by amazing people who are changing the world and even they can't know the true future impact of what they do. Even though I still struggle with disabling conditions, there is progress going on everywhere, progress in me that I cannot see yet, progress in the world around me that I haven't met yet.

The same is true for you. As long as you can hang in there in the best spirits possible, that gives you a chance to meet those opportunities. I know that sometimes my biggest foe is my own doubt, and that I have to have faith that whether or not I get better, that life on the whole can get better, giving me more encouragement to fight the good fight. There will still be times when I'm knocked down and question, but if I'm honest I question success too, so who am I to judge?

Dealing with chronic pain is soul-stealing, of that there is no doubt. Pain robs us of quality of life and robs us the ability to participate in Life. It's the latter which is the most damaging because participating in Life is what allows our souls to grow and overcome those stolen pieces. Even if we must suffer in a tortured body we cannot escape, the beauty and awe of life can be a balm against pain. Connecting with others and being part of a group can invigorate more than any elixer.

The longer I live, the more I see how limited even my imagination is. I may think there's only one right answer for my life, and I have to have that right answer or I'm doomed. Yet the more I see and discover over time, the more I find there are several right answers out there. More than I know. More than my doctors know. More than any of us know...

And in that space of the unknown lies all possibility for you and me. You can have faith in that.

Migraine Arsenal

It's been stormy on the front range, so I've had to pull out all the stops for migraine control. Whenever I meet a new pain doctor, I always ask for an extra long first appointment (they usually are longer, and I ask for more time still). This is so I can explain to the doctor all the things I do for pain control outside of the pills they give me, so they truly understand the lengths I go to to keep these things under control. I figured this might help someone else, and it shouldn't have to wait for Migraine Awareness month (June).

Schedule
The first weapon in my arsenal is a steady schedule. I haven't used an alarm clock in years, because waking up suddenly makes me physically ill, so over the years I've learned when I need to sleep to wake up in time, and I keep to this schedule, unless the pain disrupts me (like last night).

Exercise
When a migraine first starts signs of forming, if the weather is good, I'll try a brisk walk with the dog. If the weather isn't nice, I'll start cleaning. If I'm in too much pain to do either of those, it's on to the next one.

Red Bull & Water
This stuff is amazing for my migraines. For some people caffeine makes their migraines worse. Not me, and I was even prescribed caffeine as part of a migraine medication early on (Cafergot, look it up). The Red Bull has an added bonus of sugar (often a craving) and B Vitamins, which also help. (Suppliments like Magnesuim don't work for me and I already suppliment Potassium). I add the Water chaser to be kind to my kidneys, and for the sake of my stomach, I make it ice cold.

Ice Cream
I will bundle myself in blankets just to be able to eat ice cream to stop a migraine. I go with Ben & Jerry's too, since it's an ice cream that hold even more cold. (I strained my wrist on B&J's working in an ice cream parlor as a kid. It was almost a block of ice compared to the soft fluff of other ice creams. I eat it with a knife now.) It's magic on my migraines to have something that cold soothing the migraine from inside my head.

Sleep
This one is a blessing/curse. I have begun to fall asleep ahead of some migraines, and sleep through a weather trigger, and I wake up on the other side without the migraine ever forming. But this is not something that easily fits with most employment, so it's only useful on weekends & vacation.

Ice Packs, Medication & Distraction
If all of the above doesn't work, next is ice packs and distraction. If I'm to this point, I'll also start with a few ibuprophen and an anti-nausea pill. Sometimes if I can keep my stomach calm, I can keep the migraine under control more and I don't have to go the big guns. I'll use distractions like composing a blog post or really good edutainment to try and keep the pain out of my awareness as much as possible.

Oxygen, Ice Packs, a Shower & Big Guns
If the migraine comes on so strong that I need the big guns, usually the big guns alone won't to it. I'm not just reaching for a narcotic at this point, I'm also using my oxygen machine (usually used only at night) and sitting in my tub with the shower un so that I can use the random sensations from the water act as a sort of static "noise" on the nerves that draws away from the pain sensations in my head. Lying agains the cold tub on one side and the bouncing warm water on the other can really throttle some horrendous levels of pain.

I rarely use my full supply of breakthrough medication. Mostly I like it there to know I have it there, just in case. I don't want to pull out the big guns, ever. But sometimes I need them because my head feels like it's being mauled by a bear. I will always reach for the little guns first, I mean, when they're little guns like ice cream and Red Bull, who's complaining? However, I like the security of the big guns around. This is bear country, and the rest of the arsenal is useful too.

Note
Everyone's migraines are different, so not everything I do will work for everyone, and there's a great many number of methods that I've left out. For some people massage, yoga, Hemp CBD tea, and acupuncture work. I've been through many of these mathods for long periods of time through the years, so I know what works and what doesn't for me. if you get migraines, you will have to build your own personal arsenal, and this will take trial and error over time. Also, what works and what doesn't may change. I used to be able to use Botox, but as I've grown older, it's easier for the medicine to spread to places we don't want, like my eyelid. I regularly switch non-narcotics because my body over time starts showing unwanted side-effects. But we know the gaba-class of medications works well for me, cutting my pain by half, so we rotate through the medications in that class that I can tolerate.

You may have to go through the same. Always remember, though, that migraines is one of the oldest described medical conditions, and ancient cultures would pierce and remove part of the skull to help sufferers (it works, and there are reasons why...). Our culture, thankfully, is more sophisticated than that, and we have more options available. Discovering them is a process, however, one that's fully worth-while.

Pain versus Life

I'll be honest. I don't like leaving my house. My house is my comfort zone, somewhat literally. When you suffer from debilitating pain that can suddenly take away your ability to walk or grasp with your hands, and that pain comes on somewhat randomly, well, then there's a big difference between you leaving the hoise and me leaving the house. There was one time I had someone hold my purse, and he asked why it weighed 20 lbs. when it was so samll. I replied without thinking, "I have to carry so many emergency supplies. It's not just the emergency shot, it's not just the breakthrough medication so I don't throw up or become immobilized with pain. It's all the paperwork I have to carry that goes along with those medicines, all the doctor's business cards, all the emergency contacts (in case my phone is locked). And then there are the regular day to day items like wallet and keys. It is a minor logistical operation every time I leave the safety of my home. And that can create enough of a barrier to make me not want to go outside.

Even today— somehow my breakthrough medication fell out of my purse and I didn't have it on me when I needed. That meant having to muscle through an event, trying to concentrate, and also trying to keep my breakfast down. I learned earlier this week that movie theaters have only gotten louder since my migraines started. Apparently kids these days want to feel the movie explosions like some thrill ride, not just watch a story on screen. I about collapsed, and we were in the back row! (Thank goodness the feature was more an art house film, but even then there were parts in the soundtrack where I wanted to strangle the director, "Are you trying to hurt me? Stop the noise!" But thankfully those were few and far between.

But it made me realize, it's not just me! Well, it is mostly just me that reacts this way, but also, people are demanding more and more sensory input where I want less and less. As another blogger mentioned, I'd be happy if things were just normal for a while: "I want to sustain some sense of balance and maintain my work for a while." From Nikki's post, Maintaining consistancy is a good goal to have. And considering the roller coaster of pain we have ride "Forever," a nice, flat straightaway is a good change of pace.

So is it any wonder I find myself dreading the moment I know I have to let go of the handle of my front door? Not really. I don't know what to expect as much as the next person, but I can guarentee there is a high likelyhood that I experience pain. Sure, that pain is just as likely at home, but at home I know I can find comfort, I have the tools at hand that I need to take care of myself. It feels safer to stay at home because it is safer to stay at home.

But with spring exploding outside and around me, I also have a draw to be outside, to be with people, to explore, and discover, and grow. (My garden is full of little potato plants that have just burst through the soil!) I want to be able to be out there, engaged with other people, helping my community. And that very real fear of being stuck somewhere, in pain, unable to make my way home, can stop me from stepping outside my home.

I think, like Ms. Albert mentioned, I need to scale down my goals. Though I clearly have spring fever, I can pace myself as well. When I learned to ride a bike, it wasn't all at once. I started on a Big Wheel, moved up to a tricycle, then a bike with training wheels, then just one training wheel, and when I graduated to two wheel was when I realized the third wheel was causing me more trouble than helping. I had learned how to balance myself even as the bike moved from side to side beneath me. I learned how to feel the invisible tug of inertia and gravity and use those forces to balance and propel myself forward without thinking.

I am not there with my chronic illness yet. I need the training wheels of an emergency stash of pills in case they fall out of my purse at home. I need the emergency shot and the pounds of paperwork that go with all these medications. I am not in the clear yet. So it's perfectly okay for me to be cautious, and scale back my ambition to a more acheivable level. Does that make me less capable? Hardly. Though I may not be able to soar on invisible forces like I did as a kid, I now respond to much more serious invisible forces, and it's a testiment to my hard work that I am able to do what I can now, even if it's only at Big Wheel level.

Recovery is not a straight line, it is a ribbon that we follow through many twists and loops. We are always moving forward along the strand, even if it looks like we've fallen back. And it's okay for me to pace my recovery at a rate where I'm comfortable. After all, I'm the only one who really knows what's going on inside me. When consistancy has been gone for so long, it is a worthwhile goal to have.

Thank for the reminder, Nikki!

The Dangers of "Positive Psychology"

Everyone wants to be happy. At least, that's what we believe, especially in the U.S., where all our movies have happy endings. The proponents of positive psychology will tell you that a happy brain performs better on tests, better than neutral or stressed, and can help us live longer, more productive and enjoyable lives. Sounds pretty wonderful, right? Except when you try to out it into practice, there are some drawbacks that appear. One major drawback is when things fall apart. Positive psychology has no better answer than, "look on the bright side! Find the good in this! Don't put your happiness off as something that will happen after you reach a goal... have it right now AND reach your goal!" Except that life doesn't work that way, and now studies are showing what I suspected: happiness can be hazardous to your health.

It's simple, really. Who goes about solving problems when they're happy? What's to fix? When we feel great, the world is a wonderful place. Who complains when they're happy? Who watches out for bad things coming our way when everything is fine now? Why be such a Negative Nancy or Gloomy Gus, when we can be joyful in everything we do? there are no problems when your happy! It's easy to see how things are not a problem, and therefore no solution is necessary. What, me worry?

The truth is pessimists live on average TEN YEARS longer than happy people. And the truth is a pessimistic or realistic outlook is MUCH better at handling stress and misfortune. And when you have a chronic illness, there's a lot of stress and misfortune. Worrying when you *know* something is wrong is NOT a bad thing!! Oh, sure, other people might not like my attitude, but they don't have to live my life, do they?

Leslie Martin, co-author of the 2011 book "The Longevity Project: Surprising Discoveries for Health and Long Life from the Landmark Eight-Decade Study," found similar results in a long-term study that followed 1,528 people over eight decades. Among other health-related findings, the study showed that the subjects who were identified as most optimistic as children were the ones who died the soonest.

What most people haven't experienced, and therefore they do not know, is YEARS OF FAILURE while surrounded by some of the best and brightest minds our society has to offer (doctors & nurses). That would make anyone pessimistic. Every time I was given a new medication, I was told, "This time, it will work and you'll get better!" I would pray and hope as much as I could, I would send out good energy to the Universe and work hard to accumulate good karma so that THIS TIME, it would work. I would meditate for hours, visualizing a healthy me, so that reality would manifest that outcome. I'm betting you can guess how well that worked!

I got tired of the roller coaster. I got tired of trying to keep my spirits up while enduring one failure of a medication after another. Nothing was working, and I mean nothing. I was kicked out of no fewer than five doctors offices, being told, "I'm sorry, we have nothing left for you." I mean, I know there are people who claim they've tried everything, but I actually was IN an experimental study whose protocol demanded that, "all other therapies had failed." So I am one of the few people who indeed HAS "tried everything," including Eastern and alternative medicines. It is not pessimism when it's the TRUTH.

When I gave up hoping, I freed myself from all that misery. No more would I be slammed to the ground in despair and disappointment. If a medication worked, fantastic! I would be happy then, but there was NO use to getting all worked up ahead of time. All that was doing was setting myself up. And then, when I wasn't able to maintain my good mood in the face of bad news, positive psychology made me feel like a failure because I couldn't hope. To me, hoping became a sign that I didn't know what was going on, but whatever it was, it wasn't going to turn out well for me. Hope became a feeling associated with my powerlessness to keep bad things from happening to me. Hope was the veil I threw over my head, trying to make the world soft and dreamlike, only to find that all it did was cloud my vision and keep me from seeing the potentially bad things headed my way.

So it was a HUGE relief to find out that indeed, pessimism is actually better at handling stressful situations. My experience with happiness and hope being liabilities instead of support is absolutely correct! I was NOT a failure for my negative attitude, in fact, that was the best attitude I could adopt for my situation. People who are negative and worry more are more apt to take care of the little problems before they become HUGE problems. They are more cautious and don't take risks like happy people do. They can see the problems before they happen (because they're on the lookout for the negative) and therefore live an average of TEN YEARS LONGER than happy people. Take that, positive psychology!

People think that happiness is a good idea because it feels good. But I can tell you from my own hypomanic (that happy & creative stage before full-blown, hallucinating mania) experiences, feeling good does not mean thinking good. In fact, feeling good can be quite dangerous, and can cause me to be sexually aggressive, fiscally irresponsible, and insensitive to other people's feelings. I feel good, and you feel good, so let's feel even better together. Hey, it's okay for me to spend this money! It will all work out somehow, I don't have to worry, I'll find a way to get more. Oh, come on... why did that hurt your feelings? It's all in good fun, right? We're all happy here, why are you upset? Don't be so serious all the time!

For me, trying to maintain happy all the time is also very stressful, but not in the way most people view stress. See, the body doesn't care if the stress is bad (an upcoming exam) or good (winning the lottery), BOTH times are periods of increased heart rate and a stimulated body. That means a greater drain on cortisol (the hormone that allows us to cope with stress), the hormone that my body doesn't make. It doesn't matter whether the stress is good or bad, either way, I crash! And when I have an adrenal crash, that triggers a migraine, which means hours or days of pain. I've learned over the years that the Buddhists and Goldilocks have it right: not too hot, not too cold — the middle path is the best.

So while happiness may feel good emotionally, it is NOT good physically! And my attempts at positive psychology led to one of the biggest crashes I've had since I first got sick. We cannot fool ourselves that just because something feels good that means it is good. Of course people will do better on tests when they're amped up on their own internal supply of stimulants... everyone does better on tests on speed! That's how our bodies are able to survive crisis situations, by amping up all our systems to better survive the occasion. But that's not something you want to try and maintain! You'll burn your body out in the process. We need neutral and negative. It's just plain safer and healthier.

I would like to thank Shawn Achor for his work, but I would like to add a word of caution: you pulled off a few magic tricks in your presentation that you failed to mention, and as a result have started down a dangerous path. Of course young children can be talked out of their pain, but we outgrow that at a certain age and that trick stops working. We all get to an age where we realize we're being fooled, and we don't buy the b.s. anymore. And even though there is the tendency for people to think that something bad is going on when it's nothing (cute that the guy thought he was going through menopause, nice joke), but that helped us survive because it's better to assume it's a tiger when it's just the wind, than to assume it's the wind when it's the tiger...

And THAT's the biggest danger of positive psychology— it wants us to assume it's just the wind. Oh sure, it can show you that 90% of the time it's the successful way to go! And they'd be right! But if in that 10% there lies the tiger, and you land on that tiger, you're dinner, and that's 100% failure. Even though the risks are small, the catastrophic results make it such that it's better to "err on the side of caution" and assume things are NOT going to work out. It doesn't pay to be naïve.

There's the saying, "Fools learn from experience. The wise learn from history." And history tells us that the leaders of Rome kept the masses pacified with "bread & circuses." It's a political game as old as history itself: keep the people fed and happy, and they'll let you get away with genocide. It's only during economic stress that people start paying attention to what the people in power are doing. Why question authority when God is in His Heaven and all is right with the world?

We would be wise to be wary.

WSJ Infographic:

Video:


Sources:
WSJ - "A Perfect Dose of Pessimism"
NPR - "Do You Want To Be Happy? Don't Set Your Expectations Too High"

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!

Fighting Bitterness

As I began to look back on 2012 and what I've achieved, I have to admit, it's been a pretty phenomenal year. But suddenly, I was thrown into cognitive dissonance. It's been an amazing year!! So why don't I feel amazing? I struggled for weeks wondering why. I realized that I'm full of bitterness. Full-to-the-brim angst that would put the Grinch and pre-reformed Scrooge to shame. I had to ask myself, what gives? It's all been progress. Why am I still miserable?

It took a while, but when an old friend contacted me, it all came rushing back. Yes, this life is VERY successful, given what I have to deal with. But it's a second-hand life. It's not my primary life. I had that life. I was amazingly happy before this all came crashing to a head, changing my world forever. I had to leave the one place I called home, because the climate there was triggering epic levels of pain, both for my migraines and my neuropathy. That, and all but two pain clinics were pressured to go out of business, and the last to were being pressured to not use narcotics at all. And I need narcotics. My home cast me out. It broke my heart. I still haven't recovered from that.

When I visited Seattle to hook up with my old doctor to see if she could help, it was like all this tension just melted from me. I was relaxed. I was joyful. My spirit was uplifted. Until, of course, towards the end of the trip when the pain started to seep in again. Then it broke my heart all over again. I love everything about Seattle, including the ever-present rain and the terrible traffic. There is a celebration of the individual in Seattle that makes it so no one has the right to judge. To each their own! And glory to it. That was home. I wanna go home. And I can never go home.

I've found where I need to be, and I need to find a way I can make peace with it. However, it seems the more I learn about the character of my new home, the more I don't like it. I've met a few spectacular people, but on the whole, I am not a fan. I'm sure that to several thousands of people, this place is their home. Just not me. And I struggle to fit in, in a place I don't wanna be. Do you think Adam & Eve were able to get over getting kicked out of the garden of Eden? Because it feels like I was kicked out of paradise.

I loved my life. LOVED it. It wasn't perfect, but it was wonderful, and filled with wonder. Ten years later, it's as if I'm waking from a crazy nightmare, only to find that everything that was familiar and comfortable is gone. I can't dance. I can't even be around the music to dance. I can't paint. I still have the skill, and my ability has even improved, but I can't hold a paintbrush long enough---my hands, they betray me. My body betrays me. It has taken what gave me joy and perverted it into an exercise of torture. I can't even get too interested or excited about a subject, lest I blow a migraine. I feel like a butterfly in a bell-jar, beating my wings against an invisible force-field, unable to fly.

I knew what made me happy. Now I can't do any of that. And I can't figure out what to do in its stead! I wouldn't feel so robbed, if I could replace it with something else. That, however, is easier said than done. I spend 30 years figuring out myself and what I wanted. Now, most of that information is pretty useless, if not downright hazardous. I have to come up with an entirely new list of things to make me happy, and I don't even have a clue where to start! Thinking about it sure doesn't help, because all it turns into is rumination on those things lost to me.

Certainly, I don't want to live mired in bitterness, unable to enjoy the success of 2012, but I don't know how to fix this!! Halp!

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.

[THP] 20m Happy Memory - Pain Control

I had received my prescription, and I had taken my pills. It had been long enough for the pills to get into my system. And I want to go do something, bracing myself for the pain and exhaustion that would follow. But it didn't come. At first I didn't believe it. I thought it was just waiting around the corner, ready to pounce on me, as it had done, every single time, for the past 10 years. I could do things, sure, but there was always a monster of consuming pain, waiting for me on the other side. Not this time. I had pain control.

I couldn't believe it. I did a quiet dance in my head. I didn't dare celebrate yet. I'd had drugs work for 20 hours then quit (Depakote). I'd had drugs work for 3 days then quit (Neurontin). I had to be cautious with my optimism, but it was there. A rising joy that maybe this time we'd finally gotten it right. I had faith in this medication, after all, it's a narcotic. I'd had narcotics not work on me before (Fentanyl), so I knew if this one worked at all is should work completely. And signs were good! The monster wasn't there. The room usually filled with pain and agony, was empty. I was stunned.

And now I'm stunned that I'm giddy with happiness to do stupidly bothersome chores, like mow the lawn. It's hard, and I need to use my mind as well as my body. And every moment I can sweat and exert my muscles, I'm just laughing with delight inside. I haven't been able to do this, even if I wanted to, even if I had to, for 10 years. Now I can, and it's marvelous! Being able to clean the house? Yes, please!! OMG, everything is showroom perfect!

I do have to pace myself, but now I can trust my body to be more realistic in its complaints! I'm not going to be punished for every little thing I do! I'm not in trouble anymore. I can make my life my own again---I have the freedom to make the choices >I want to make, rather than have my body just say no. Oh.... it's so AMAZING!!

There's so much that I want to do, and like a little kid who has finally been let out for summer, I'm going after everything I put on my wish list or jealousy list while I was sick. Gardening is the first. I want fresh grown fruit for my jams and pies! Hold the phone, it's so wonderful! And Asian veggies?? OMG, must have! This is all so brilliant.

Every morning, I'm happy to wake up. Even if I've got a migraine to ride, that's okay. I can ride it. I might have some terrible mood swings, but they'll pass. I HAVE PAIN CONTROL!! That means that none of this stuff stops me anymore. It can fuss and fight me all it wants, but in the end, I'm going to win now. I'm not going to have to set my life aside for anything, ever again.

Hallelujah!!

[THP] What's My Mountain?

Sometimes, it's really difficult to have direction in life. Should I take this job? Should I sign up for that project? Should I go back to school? It's difficult to know what's going to make us happy. Additionally, our brains are particularly bad at truly anticipating how something is going to affect us. We will predict that a bad event will feel much worse than it ends up being. We're equally poor at determining what will actually make us happy. And that's because only about 10% of my outside life correlates to my happiness. The other 90% is generated internally. Great! Now how do I generate it?

I believe the answer is revealed in a commencement speech given by Neil Gaiman. In it, he talks about never having a career, just having a list of everything he ever wanted to do with his life: write a novel, make a motion picture, make a comic book. He set those dreams up as his "Mountain" and then he made his decisions base on whether or not those decisions would take him closer, or farther away from, the Mountain. He got his first job as a journalist, because that allowed him to ask questions. He could get his answers on how to get further along towards his Mountain that way.



We all have a Mountain in us. It doesn't matter if the idea is big, that's what a Mountain is supposed to be! It's got to be something we can see from far away, large enough that it can attract and hold our attention, even if other things appear on the horizon. A Mountain is something that, after days of trudging a hard path, we can still look up and see that we're heading in the right direction.

That's why it has to be your Mountain, and not anyone else's. If the goal is to build our happiness, then it can't be someone else's Mountain. That makes them happy, not us.

Find Your Mountain
Take out a sheet of paper and make a list of everything you wanted to do with your life. It doesn't matter if it's impossible, put it down anyway. Impossible doesn't matter. The Dream is what's important. We first need to identify what those dreams are, then we can worry about possible or impossible. So close your eyes if you have to and think back to when you were a child, and everything you wanted, even if it's something as fantastic as meeting Spiderman. Just put it down. Did you want to walk on the face of the moon? Be a race car driver? Create your own neighborhood? Breathe underwater? Make video games? What ever came to you in a dream that you thought would be neat? What do you get your hair on fire about? Write it all down. Those are the stones that make up your mountain.

Not Sure? Hampered by Disability?
Don't worry. If you're unsure, or if nothing quite grabs you enough, that's okay. It may be that you have correctly surmised that you don't have anything you're (yet) passionate enough about. That's okay! I stumbled upon what I was looking for. I just followed what seemed like a good idea until then. And surprisingly, all my choices along the way, even though I didn't' realize it at the time, have played their part.

If disability stops you then try to come at the issue from a different angle. Perhaps there's a way to be involved in a new way that accommodates your needs. This isn't always possible, or sometimes it hurts too much to be involved in activities we used to love in a limited capacity. That's understandable and natural. In that case as well, it's probably just a matter of time. You need to explore as much as is possible, and draw from that new things that move you.

New technologies that empower the individual are being designed all the time. Things will become available that weren't before. You'll have new experiences, think new thoughts. Each day, a new beginning.

If you know a direction, excellent. Go there. If not, look inside for who you are, look outside for what you like, and live to experience new things you haven't tried before. It will come to you. You can relax.

I don't have enough money...
Contrary to popular belief, it's not the next big thing that's going to launch you. It's like that old nursery tale about the tortoise and the hare. Slow and steady wins the race. Japanese Kaisen says “Don’t write a book, write a page…” You might not have enough money for the big plan, but you might have just enough to get a small project started that would allow you to showcase, demo, or even kick-start the next phase.

I don't have enough education...
First, find out if what you want to do requires an education. If it does, figure out if it's a formal education you need, or if certificates and exams are more the industry standard. Remember that where you graduate from doesn't always have to be where you started. Figure out where you want to be, and work your map backwards from there, until you're able to connect it to where you are now.

I don't have the spoons...
See if you can delay gratification, and just work on a slower time table. If you symptoms are managed, these things are possible, if we're able to not worry about when it gets done, jsut thatit gets done. We will have to reassure ourselves, however, that jsut because things are slow, doesn't mean they're forever stopped. It just takes a little more patience to see progress.

I don't have enough symptom/pain control...
Then don't worry about a Mountain right now. You're in Epic Battle! You've got other things to contend with. If you're able to do things with your Mountain, great! If not... no sweat! You've got other, higher priorities. Once your symptoms become managed, then you can look at really setting a course again. Notice I didn't say cured.... I said managed. Scientific studies have shown that if symptoms are managed, a chronic illness has little to no negative impact on a person's happiness. In fact, it can even be a benefit. However, if the symptoms are not managed, it can be a living hell that's taking all your concentration to deal with.

Don't worry. Your Mountain will wait for you. It will not abandon you. And you might be surprised at how far you're carried forward despite your limitations, once you get some breathing room and a chance to check over your shoulder. There's the constant feeling that you're missing out on life with an unmanaged chronic illness (sometimes even with managed ones). That's natural. That's because we long to do, when we have not been able to do. But that's like summeritis in the last few weeks of school, then a month into summer break, yelling, "I'm bored!" You know all too well what you're missing out on. So use now to make those lists of all the things you want to do, so that once things are managed, you can pounce on those dreams like a tabby on catnip! Or, if it's too much pain to think about it, just relax and know that time changes things. Opportunities arise from the strangest corners...

What are some of your suggestions, or tales of your experience, in looking for your Mountain?

Previously in this series: Building New Habits, Breaking Old Ones

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 More Often Than Not

Today is Chronic Migraine Awareness Day. People with Chronic Migraine have a Migraine or headache more often than not. Think of and share a random act of kindness that you can do for someone with Chronic Migraine. I have many ideas. But I want you to join me on a little thought exercise first. Here's what I want you to do. I want you to imagine your worst hangover. Now, instead of that getting better, I want you to imagine that lasting for days. Think of what you wouldn't be able to do. Then ask your migraineur friend if they need help with that.

If they're comfortable with it, see if there are some household chores you can do for them. Laundry. Grocery shopping. Running errands with them and be an extra pair of helping hands. Mow, or get someone to mow, their lawn for them. Help them with their pets. Make one of those coupon books: "One Free Grocery Shop - I will go grocery shopping for you (you pay for the groceries)." Stick in there any favor you think they would need help with, while in blinding pain. Ask them what they need help with. Make a list. Keep the things you will do. Pass on the others to a friends to help.

Find out what their migraine triggers are and what they like eating during a migraine. Make healthy homemade snacks that don't include any of their migraine triggers, that they can eat when they're too sick to cook. Find out what helps them in a migraine and make a gift basket of those items: reusable cold packs, rice sock, top-rated ear plugs, full-dark eye masks, and personally for me, Trader Joe's truffles and Red Bull (both help my migraines, ymmv).

Give them something that will help them laugh. Even if it's not during the migraine phase, laughter does help heal the body. Find out where they get their laughter from, whether it's stand-up comedians or comic strips. Give them the gift of laughter.

Those are my suggestions. Take what you like, and leave the rest.

"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."

#NMAM Blogger's Choice: Strange Behavior - The Physiology of Migraine Mood Swings

Migraines are very interesting things because it's an attack on the whole nervous system. Migraine effects the whole body, and included in that is mood and behavior. One friend of mine became apologetic when he got his migraines. He couldn't stop apologizing for himself and thanking people. Beyond my strange cravings (cigarettes---the real kind---not the e-kind, Red Bull, chocolate, super-sugary candies), I have mood swings from here to Egypt. I can get super creative, sexually aggressive, and love the world (also known as hypomania), I can have panic attacks that freeze all decision making, or I can have deep, suicidal depressions. None of this is controllable through medication. I'll explain some of the reasons why.

One of the functions of migraine is that the body loses all serotonin. It loses its supply in the blood, it loses its supply in the brain. Migraineurs (those people who suffer from/survive migraines) just piss it out. It's measurable in the urine.

"Disturbances in serotonin levels are associated with most headaches. In migraines, serotonin levels increase before onset and then decrease during the headache phase. In chronic tension headaches, serotonin levels remain low all the time. As a result of lower serotonin levels, nerve impulses move along the trigeminal nerve to blood vessels in the meninges, the brain's outer covering. This causes blood vessels in the meninges to dilate and become inflamed and swollen. The result is a headache."
- Phyllis A. Balch, CNC, Prescription for Nutritional Healing, 4th Edition: A Practical A-to-Z Reference to Drug-Free Remedies Using Vitamins, Minerals, Herbs & Food Supplements

The initial burst of serotonin causes hypomania and/or panic attacks. There are short-acting drugs for the panic attacks, but no short-acting medications for hypomania. The subsequent lull in serotonin causes the suicidal depressions. There are no short-acting medications for that either. Additionally, drugs like SSRIs are useless. These drugs try to preserve the brains supply of serotonin by preventing re-uptake of serotonin by the cells. But when the brain is dumping it's supply.... That's like putting a lid on a bucket of water to try and keep the water from splashing out, when there's a hole in the bottom of the bucket. Most migraine abortive medications---the class of drugs known as the triptains---are serotonin-like molecules. They stop the migraine by "resupplying" the brain and the blood with molecules that look like serotonin.

Well, that's not exactly true. The triptains stop part of the migraine, but not all of it. Migraine actually starts deep in the brain stem, and "consistent with previous work, the [brainstem] activation persisted after pain was controlled by sumatriptan," one of the triptains (S. K. Afridi1, M. S. Matharu, L. Lee, H. Kaube, K. J. Friston, R. S. J. Frackowiak and P. J. Goadsby, "A PET study exploring the laterality of brainstem activation in migraine using glyceryl trinitrate," Brain, Volume 128, Issue 4, pgs. 932-939). Meaning, the triptains can take the migraine pain away, but that doesn't mean they've taken the migraine away. Which is why a lot of people experience a "rebound" headache (not really a rebound, since it's the same headache!) once the triptain wears off.

[For some of the best articles on migraines out there, see:
PBS Need to Know: Migraine Headaches
Scientific America: Why Migraine Strikes
Science News: Head Agony
If you can understand those, you can understand migraine.]

It's completely normal to expect with all this wacky brain chemistry going off, that besides the pain, there's going to be an emotional component. (Pain, itself, provides its own emotional components, triggering "fight or flight" emotions such as aggression or apologizing.) There are going to be mood swings as there are brain chemical swings. And since all this also kicks off the autonomic nervous system by causing physical stress on the body, the migraineur's ability to handle external stress is taxed. Now add to this that some people's migraines have tripped over into lasting every day... Sometimes for decades (I'm looking at you Kerrie Smyres)... Then emotional stability becomes something of an Olympic sport!

So goes the strange behavior of migraines. It's like mini-bipolar with pain, nausea, and a host of other symptoms (including, sometimes, loss of language skills and balance). Fun times! @.@

So What Do We Do About It?

First, we have to practice detachment, and remember that feelings are not facts. Just because I feel up or down, doesn't necessarily mean anything more than a brain malfunction. I need to measure the situation against reality and see if things check out. And even if they do check out, that doesn't then mean I get to go running down the field with my emotions. It means I think about the best possible outcome for the situation and taking aim for that. Have I a right to be angry? Sometimes, absolutely! But that doesn't mean it's a good idea for me to get angry; that has negative, physical side effects, plus it clouds my vision to opportunities---they're harder to see when I'm angry and it's easier to slip into self-pity.

We've got to practice positive thinking, daily, to stay strong. I'm not talking Pollyanna-type, sun-shiney, sugary sweet, bullcrap. I'm talking real soul-searching, find the good in this (even if you have to dig a mile down for that diamond) type positive thinking. One: Remember that your suffering can be used to help other people with their suffering. Two: Recognize that you are a survivor, even though you were drafted and didn't have a choice in the matter. Three: Recognize that you are learning to manage something that no one would choose for themselves; this isn't extreme-sports, weekends-only heroics---this is the real deal. Four: We have a unique wisdom about the frailty of human bodies, human minds, human promises, human technologies, and human institutions; we can appreciate when things work, that much more. Five: We have a unique ability to be there for other people like us (there is an understanding---a kinship). These are just a few automatic wins. These are the thoughts we can repeat to ourselves in the dark times so that the suicidal depressions don't end up in suicide. These are some of the reasons we have value as human beings, despite being sick. We have these values as a result of being sick!

Next, we need to use these values to re-frame or thinking about ourselves. We aren't just patients, we're healers, too---healing the hearts of others like us. We're not alone in our suffering, though it may be lonely and isolating. We're diplomats, extending the welcome to others with conditions like ours. We're educators, informing the public of scientific, medical, and political matters. We're activists, raising awareness for people with our condition. We're researchers, spending countless hours on the internet looking up patient information. We're project managers, administrating the near full-time job of records, medications, symptom-tracking, billing, insurance claims, etc., etc. We may be a miserable pile of pain-ridden goo, but we are at the same time, absolutely amazing. Our diseases may limit what we can do, but it doesn't limit who we are.

It's easy for us to lose sight of our worth, especially when migraines are so crippling. So remind yourself of your value from time to time. Be kind and forgiving towards yourself, like you would a sick child. Comfort, but don't spoil. We must be careful today to make a good tomorrow. We must forgive ourselves when we fall short. We must try when we have the strength and rest when we do not. Additionally, don't think that you lose worth from being sick. Our disease is nothing to be ashamed of, period. I don't care if you have migraines from a self-induced head injury. No one says, "Race you to the first neurologist's visit!" It's not the mistakes we make, it's our recovery from them that counts. That we're walking the road of dealing with a chronic illness has merit in itself, regardless of source.

Practicing these thought exercises helps shore up our emotions, so when those big depressive storms come, we can remind ourselves of the good things, and hold on until the storm passes.

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

#NMAM "Say what?!"

This one ended my marriage. For today's migraine awareness posts, I'm asked: What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances? I was standing in the bedroom, my husband was laying in bed. I asked him if he'd like to get frisky. We hadn't had sex in almost six months. He told me, "I know this sounds irrational... but I'm afraid if I sleep with you, I'll catch your migraines." Um... riiiiiiiiiiiiiiiiiiiiight. It was at that moment I realized, "This man is abusing me."

My husband had been wonderfully supportive before we got married, even taking off 3 weeks from work to see me through my early hospital visits. He would ask doctors questions to ensure I got the best care there and at home. He was wonderful. That's part of why I married him. But after he got a ring on my finger, all that changed. He couldn't be bothered to help me with doctors. He'd make me feel guilty for having to go to the ER. There was one point where an ER doctor was threatening to send me 5150 ("a danger to myself or others" - a free pass to the loonie bin) because I was "carrying on too much," when I was screaming from the migraine pain. My husband was sitting next to me doing nothing. I couldn't look at him because the pain was so bad, so I just asked, "[Husband], what are you doing?!?!" I didn't get sent to psych. I did get some medicine. I also got a divorce.

I didn't file for divorce immediately. For one, I wanted to hang in there and see if we could work our problems out. We went to marriage counseling, but he refused to do any of the things we agreed upon in the sessions. It wasn't until December of that same year that his father pulled me aside and said, "I think my son has the same depression I had." I talked to my husband, and he agreed. But he refused to get treatment for it. He refused to cooperate with anything I suggested. Shortly after that comment, "I'm afraid I'll catch your migraines..." I asked him if we was even willing to take part in our marriage. He said no. That's when I filed.

When my lawyer asked me why I was getting a divorce, I told him that line. Lawyers don't shock easily. They've seen every nasty couple fight under the sun---real Jerry Springer stuff. But even he was taken aback by that one. "He said that?" my lawyer asked, unbelieving. I only nodded. "Well, then. Let's get you divorced!"

People can be so mean.

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

#NMAM "Day Dream Believer"

Today's blogging challenge for migraine awareness is: Describe your dream day, without a migraine to hold you back. Before we start, let me tell you that I hate this exercise. I don't want to think of how my life would be without migraines. All that's going to do is remind me how much my life is not how I want it. I can't be encouraging feelings of envy like that! I've got to deal with life how is is, not life how it isn't. And life how it is, is difficult enough!

I wanted to grow up, graduate from college, settle into a nice career, get married, have children and raise a family. A simple, accomplishable dream, right? Apparently that was too big of a dream for me. I was able to graduate from college, but I had to switch my major when in the middle of my sophomore year. My studies got interrupted by a ruptured cyst on my ovary. In my Junior year, I caught a series of sinus infections and flus that had me bedridden for months. The only thing that saved me from having to drop out was that I had switched to and English major that wasn't dependent on attending class every day. (My grade was determined by two papers---one at midterms and one at finals. That left a lot of time for me to baby myself and get through.)

I settled into a nice career: I was able to join my English major with a love of computers and become a technical writer. It made good money, and it included a lot of contract work, where I could take off time to raise a family, and not have my income hurt too badly when I decided to return to the workforce. Except that I started getting sicker and sicker. Getting to work from 9 to 5 was becoming impossible. I had companies who would allow me a flexible schedule, but I had to stop working when the migraine went to an every-day ordeal (despite all medical interventions).

I thought I had found a nice man to marry---my college sweetheart. Sure, things hadn't worked out when we were kids, but we were adults now with new perspectives. He'd become a responsible Navy man, like my father. I'd realized that I'd lost a good thing when I had it. We decided to get married, but that was also right when my illness made me unable to work. All our wedding plans got thrown into disarray. We ended up canceling the whole thing, because I just couldn't manage... anything. All of our money was going towards my medical bills, and we still weren't getting any answers. I didn't want to remember my marriage as the time I was sick, and we both thought I could get better. We figured it had to be soon. I'd already been through 9 months... surely a migraine couldn't go on longer than that! But we were wrong.

It soon became apparent that I wasn't getting better. The money was running out. I would need his insurance and income, so we ended up eloping. No white dress... no friends and family... we had to borrow our witnesses from the next camp over---strangers to us, who were going to attest that these two people should get married. Yeah... that should have been a sign. But I was too sick to really pay attention to any omens that didn't involve my own body. The marriage didn't last long, as he quickly discovered he didn't really mean the "in sickness" part of our vows.

I dealt with the divorce, and my lawyer mentions how it's a good thing I don't have kids. I knew he meant with my ex..., but I still had to fight back the tears because I was wrestling with the reality that I could never have kids. That was the one thing I had wanted since I was a little girl: I wanted to be a mom. But my disease was having none of it. We had tried for a year to get pregnant, and I never even got so much as a close call. Turns out that my body doesn't even know that's supposed to be a normal part of a girl's life. The tests later confirmed it.

So I have a really hard time trying to dream up a perfect day. I thought I was dreaming up a normal, pedestrian, average life. Nothing too grandiose... I didn't need trips to Paris and Rome. I just needed my little corner of the world and a family to love. Maybe that's where I went wrong. I didn't dream big enough! Maybe I should have wanted the most extravagant lifestyle with lots of money and power, and little responsibility. Perhaps then I would have been "saddled" with a simple life.

My dreams have to include my illness. When I think of a future me, I have to imagine that it includes my disease, and that I have somehow figured out how to manage it. I simply must include my limitations in my fantasies, otherwise I'm aiming for a part of the map I can never reach. (You can't get 'thar' from here!) If I want to be able to believe in my dreams, it has to take reality into account. Otherwise, I may as well dream I'm an elven princess in a Tolkien paradise, with a life span of thousands of years and nary an illness to worry my pretty heart.

If I want to be a "Day Dream Believer," I have to include the pain and suffering. But I can dream that I'm able to get through the pain and suffering, gracefully, nobly, and perhaps even joyfully---experiencing pain, but able to laugh with a free heart anyway, knowing that the pain will pass and life will soon be sweet again. Having friends and family around me who are fully supportive, helping me to rise above the pain and live life to the fullest despite it. That would be a perfect day, indeed.

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