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 Only you know which myths are myths and which misconceptions are outdated, off, or just plain wrong.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.

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...

How to get doctors to listen...

I was asked a very important question, over on my tumblr page: How did you ever get someone to take your pain seriously? Pain is one of the most soul-stealing symptoms of a disease. Pain changes how we behave, it changes how we think, it changes how we live our lives, it changes who we are, and who we're allowed to be. However, there are people out there who would use pain pills for things other than pain. And even though addicts are outnumbered by real pain patients at a rate of 9 to 1, even I worry about giving out advice that could be used to abuse the system. But I think I've found a way around that problem, while still helping pain patients get what they need. The key is: Tell your story.

One big way we can set ourselves apart from drug seekers is by telling the story of our symptoms. This is completely backward from everything a doctor will want you to do. Just as they don’t want to feel rushed, they’ll take out being rushed on us, and try to speed up the doctor-patient communication time. DO NOT LET THEM. They will want to make you rush and list off your symptoms like you’re reading out of a manual. But all that does it make it look like we’ve memorized the list from some web site, which is fine if you want antibiotics for strep, but is awful when you need pain medication. Instead, tell your symptoms in the form of a story: “When I wake up in the morning, it feels like this. I’m not able to do this or that, because blah, blah, blah. It’s really embarrassing our in public, because yadda, yadda, yadda. When this happens, it’s like that.” In the story, there are small little details that only doctors and patients know about. Doctors, because they went to school for it, and patients because they’ve actually experienced it. You will know things that no web site can teach you, and in this way, you can show your doctor that you’re pain-avoiding, not drug-seeking.

Try it out, and let me know your results!

Ask me more! I welcome questions at any time. No question is too much! (Though I may edit content to maintain a work-friendly blog.) You can even ask anonymously!

I have pain control!!

This month has been amazing. I have been able to do things that I haven't been able to do since I got sick. I was able to mow the lawn for the first time in ten years. I was able to enjoy a lightning storm for the first time in almost fifteen years. I am no longer a human barometer! I wasn't able to predict this latest round of storms because nothing hurt! My doctors and I have finally found a combination of medications that has me feeling NORMAL again. I'm still in shock. Here's another, "I didn't think this would happen in my lifetime."

We're in the stone age when it comes to pain control. Worse still, we have a "War on Drugs" that casts many helpful medications in a hurtful light. The medication that has given me my freedom back has a bad reputation. But it's a medication with absolutely NO HIGH. I can be on this medication, and it doesn't affect my ability to think or operate heavy machinery. It's methadone, the medication given to heroin addicts, and it works wonderfully on my neuropathic pain. The change has been night and day. I feel like a new person. I'm still in shock, because I can't believe this is real. It's as if my pain is simply gone. There's no side-effects. No fuzzy feelings. No la-la land. Just no pain. IT'S AMAZING.

The only drawback to this medication that I can see is the stigma. And if that's the only drawback, I'll take it! My pain has been under control, and I'm at a very low dose. There's no drowsiness, and the pain control is so complete, I've started doing land-based physical therapy. I was able to exercise for 40 minutes! In the past, at its worst, the pain has been so bad that my physical exercise was restricted to trips to the bathroom. I was stuck on the couch, in pain, for weeks. That was just last year. Now, I'm able to use a stationary bike for 7 solid minutes. Unreal. I'd be a fool to let stigma stop me.

It's not always 100%. I still have breakthrough pain from a number of sources. For the terrible, debilitating, ice-pick pain? I have a medicated lotion that works like a charm. I still have a narcotic medication for the break-through pain, but I haven't had to use it that much at all. The methadone is really doing the trick. That daily, grinding, soul-sapping pain that I lived with every moment, that I had to manage from moment to moment, is gone. I have FREEDOM again. I can make decisions, based on whether or not I want to do them, rather than whether or not it is possible for me to do them. I can use all this time that I've had, sitting on my hands, and actually go out and do things. And I can do these things at the pace of the people around me, instead of cut short all the time, by my body screaming at me.

I went camping. I slept on the ground. Usually I have to specify the type of chair I sit in so that it's comfortable enough for me to sit for more than thirty minutes. Sleeping on the ground?? That's like asking someone to sleep naked, on a bed of broken glass. You'd have to be insane. But I slept through the night, and in the morning, I didn't feel like I'd been run over by a truck, either (which was normal, even sleeping on a mattress). I was able to go sight-seeing, and then I was able to drive us home, which in itself is unreal. Usually the vibrations of the car set my nervous system on fire. If I'm driving, I also get the vibrations through the steering wheel, to one of my hot-zones: my hands. When I lived in Seattle, had a 4-hour drive (behind the wheel) landed me in the ER. I generally don't road trip unless I have to. This time, the travel was enjoyable.

My head is just spinning with all the possibilities. Life has opened up to me. My body still needs time to recover, but if I am steady with my physical therapy, this should happen. With time, I could potentially return to work. I'm practicing by increasing my workload at home, and my house has never been this clean! I have everything organized for the book, and I should be able to start a normal (rather than haphazard) writing schedule again. It has been ten years since I have been able to be this consistently productive. It feels SO good!!! I am able to be responsible like never before. It is such a comfort to my soul.

I want to throw a party... I'M BACK, BABY!!!

But most of all, I get to tell myself: I was right all along. It wasn't that I was lazy, or that I didn't want to work, or that I was afraid, or that I was being unreasonable. It wasn't any ulterior motive at all. It was just that I was in pain. REAL, physical, biological in nature, pain. I wasn't making excuses, or having delusions of illness. I wasn't malingering. It was absolutely real, and the moment we got me the right medication, I got BETTER. And it wasn't me drug-seeking, because the medication that works, has absolutely no high!!

At my party, I'm going to have a big ole serving of crow, for all my haters and non-believers. I'm also going to do the "I told you so" dance. ;^D

Life is sweet again.

Happiness in chronic illness is possible, but essential to that happiness is management of symptoms. If the symptoms are managed, you can learn to live with disease as though it's not there. However, if the symptoms are not managed, then at any moment, without warning, my awareness can be ripped from whatever situation I was dealing with, to the necessity of dealing with a symptom. Disease interrupts anything and everything. It does not care about sleep. It does not care about manners. It does not care about embarrassment. It does not care about safety or responsibility. It does not care. And it, by necessity, makes me not care, too. But it's the disease, not me. It is a world of chaos and vicious whim. Happiness is very difficult to find there. Manage those symptoms, and I am in a different world. The difference is heaven and hell.

The key to walking through hell is: don't stop.

#HAWMC - 6 sentences

Today's prompt: "Six Sentence Story. What can you say in six sentences?"

Half of the population has a chronic illness. Of that half, over one-third have a disabling condition, 47% are in chronic pain, and only 4% have a condition that is visible. These numbers do NOT include seniors: 90% of seniors have a chronic illness, and 52% of seniors have a disability. HEALTHY PEOPLE ARE A MINORITY. We chronically ill folk do not need to feel ashamed, or think of ourselves as "less than." The truth is chronic illness comes into everyone's lives eventually... one way, or another.

#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.

Medical Marijuana

Before we begin, I would like you to picture this. A plant is grown in a greenhouse. Its flower is harvested when it reaches maturity. It is then processed in a lab. It is given to the patient who is then able to lead a more normal life as a result. I'm not talking about medical marijuana, or MMJ. I'm talking about Digitalis, or as it's more commonly known---the foxglove---a flower that we grow and use and give to heart patients as a medication. We have also found use of this flower in science: "It is used as a molecular probe to detect DNA or RNA." (Wikipedia) We have been using plants and animals for our own needs since forever. Willow and birch bark are two of the original sources of aspirin. Novocaine, and all the other medications that end with -caine are a plant derivative. Alcohol happens naturally to fruit and grains in the right conditions. Even birds and monkeys get drunk. And yes, sometimes people use these things for recreation. So please, let's look at medical marijuana as exactly that: MEDICAL.

First, let's explore the science behind it. There is, in the body, a system, which they now call the endocannabinoid system, which works using biochemicals that are the same produced by the marijuana plant. Our bodies produce marijuana-type chemicals as part of their normal function. Marijuana is just an external source for these regularly used, natural human biochemicals.

The endocannabinoid system is a relatively recently discovered neuromodulatory lipid signaling system that is comprised of the cannabinoid receptors, CB1 and CB2, the endogenous arachidonic acid-based endocannabinoids, such as anandamide and 2-AG (2-arachachidonoylglycerol), as well as their biosynthetic and degrading enzymes. These components can be found in various locations throughout the body, such as in the central nervous system (CNS), the gastrointestinal tract, the liver, the pancreas, adipose tissues, immune cells, and skeletal muscles. Although performing a variety of different localized tasks, the system’s general role seems to revolve around maintaining homeostasis through regulating energy storage, nutrient transport, and feeding behavior. Furthermore, as their name implies, endocannabinoids are described as having cannabimimetic effects, in that they roughly mimic the pharmacological effects of cannabis. (P. Siebler, Masters student in Physiology at CU Boulder, "Sleep Physiology", 2011)

Let's put that in English... It's a recently discovered part of the nervous system that is comprised of the cannabinoid (meaning they respond to cannabis-based molecules) receptors, named CB1 and CB2, the the molecules (like vitamins A, E, D, and K) that the body makes itself, such as the molecule anandamide (pronounced AN-an-DE-mide) and 2-AG, as well as the enzymes that the body makes and uses to break these larger molecules apart. These compounds can be found all throughout the human body, such as the central nervous system (the nerves that control how we sense and feel), the gut, the liver, the pancreas, a "loose connective tissue" (the stuff that holds everything together) called adipose, immune cells, and skeletal muscles (how we move). Although the system performs a variety of different tasks at the small, local level, the system's general roll seems to revolve around helping the body maintain a normal state through regulating energy storage, the movement of nutrients through the body, and hunger. Also, as the name implies, endocannadinoids, these naturally occurring hormones that the body makes itself, cause roughly the same effects as experienced when a person takes medical marijuana.

While not a panacea, or all-cure, it's easy to see why medical marijuana is so helpful to so many people. It's one of those very basic biological molecules that the body needs, like a vitamin. This is why scientists now believe that there can be a endocannabanoid deficiency, called CERD, that can be treated with the use of medical marijuana. MMJ works on the central nervous system, so right there it will potentially help with any pain problem or central nervous system dysfunction, like epilepsy. In fact, medical marijuana has been found useful for children with epilepsy: THC effected reduced spasticity, improved dystonia, increased initiative (with low dose), increased interest in the surroundings, and anticonvulsive action. Or, in English, medical marijuana (in concentrated THC oil form) reduced muscle spasms, improved a medical condition known as dystonia (a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures), increased spontaneous personal activity (with low dose), increased interest in the surroundings, and stopped convulsions (a medical condition where body muscles contract and relax rapidly and repeatedly, resulting in an uncontrolled shaking of the body).

In fact, in Israel, they are still recruiting for their clinical trial for the use of MMJ on PTSD. Their clinical trial is in Phase IV: If the drug successfully passes through Phases I, II, and III, it will usually be approved by the national regulatory authority for use in the general population. (Wikipedia) Israel has given governmental support to the use of THC for the treatment of PTSD, and other conditions.

Israel is one of the first countries to have permitted the use of medical marijuana. Tel Aviv’s cannabis clinics have been open for some time on an experimental basis, with government support.

They offer treatment for cancer, multiple sclerosis, HIV, colitis and other ailments. Recently too, Israel’s first-ever hospital to offer cannabis as a treatment, Sheba Medical Center in Tel Hashomer, started its pilot program. There patients obtain the necessary government permit, according to a strict protocol that the hospital developed, and then are provided with cannabis. (Medical cannabis in Israel: Revolution or evolution?)

But let's hear from an actual patient:

I lived in Colorado where it was legal and had a doctor that believed in its aid for fibromyalgia and migraines. I went through all of the legal channels of the state and used it for a while until we moved to Texas. I can say that it did really help me with the pain of migraines and the tension that comes along with them. MMJ is available in many strains which are directed for different illnesses, such as one that makes you hungry. My son uses this strain often for his Crohn's disease. He is able to keep some weight on this way. Another can give you energy to aid in helping us get off of that couch and clean the house.

As for the methods of using, there are many. I found that the Marinol (dronabinol) pills that are available by prescription did not work for me at all. The dispensaries can make up a capsule using the keef and it works good for someone who needs to relax and sleep. It takes awhile to work since you have to digest it. I used brownies at times, which is a very pleasant way to ingest the drug. I hate the smell and the taste it brings when you smoke it, but it is really the most efficient way for me to use it. I found that a water pipe (bong) was the least insulting for me. When my migraines are at their worst and I can't open my eyes or get out of bed, I could take 2 puffs and I could be up and around within the hour, or sleeping for a few hours if that was my choice.

I believe MMJ is a great choice for some people and should be made available to chronically ill patients, no matter state they live in. I am not oblivious to the problems that can come with marijuana, but I believe this is better for our bodies than some of the prescription medications that we are given. You cannot overdose on this plant. It has proven to be a Godsend for my son and brother-in-law who suffer with Crohn's disease. I wish it was legal in Texas; if so I would use it again. I struggled with using it at first because I am a Christian, but when illness takes over your life, some of our ideals can be questioned and maybe changed. Our eyes are opened to new ways of thinking and our ability for compassion and empathy grows.

Thanks for listening.

Finally, does it have side-effects? Sure. All drugs do. But are these side-effects actually dangerous? One study on driving statistics shows that stoned drivers are safer drivers:

Now, pro-legalization backers have yet another point in their favor: According to a new study from the University of Colorado-Denver, the 16 states that have legalized medical marijuana have seen an average 9 percent drop in traffic deaths since their medical marijuana laws took effect. The study analyzed data from 1990 through 2009.

“We went into our research expecting the opposite effect,” says study co-author Daniel Rees, a professor of economics at the University of Colorado-Denver. “We thought medical marijuana legalization would increase traffic fatalities. We were stunned by the results.”

When it comes to traffic safety, can marijuana really save lives?

By contrast, motorists who’ve puffed pot “drive slower, are less likely to take risks, and are more likely to recognize when they’re impaired and decide not to drive,” he says.

Additionally, both Spiritual Leaders and Law Enforcement are beginning to speak up in favor of legalization of marijuana.





If you have the courage to share, what are your thoughts?

Full Committee Hearing - Pain in America: Exploring Challenges to Relief

A wonderful thing has happened on Capital Hill. Congress is finally seriously looking into pain and pain research. This video is amazing. Some parts were difficult to watch for me because of my beliefs on pain, but I was amazed by Christin Veasley and her ability to defend pain patients. I am going to speak on the Emotional-Physical connection of pain, which I don't think was very well addressed in the video.

Can emotions cause pain?
Absolutely. That doesn't mean, however, that the pain isn't real. There are studies that show that heartbreak actually causes physical damage to the heart. So the idea of "all in your head" or "you're manifesting this pain" is just silly. Yes, emotions play into and can increase or decrease pain. Yes, you can play with your emotions and influence your level of pain. But I love how in the anecdotal stories, both people admit that their pain isn't 100% gone, but it's better enough that they can function. That's all any pain sufferer really wants---function. And when you find that solution, you'll treat it like a miracle, even if it isn't 100%. I'm the same way about my Occipital Nerve Stimulator. That doesn't, however, mean it works for everyone. Migraine patients, particularly, have the inability to ignore pain like other people. So while biofeedback works wonderfully on some, it just can't work on others. We need multiple ways of treating pain, and everything that comes along with it.

Does this mean doctors can ignore pain and send a patient to see a shrink instead?
Absolutely not. There needs to be a holistic (meaning whole system) approach to pain. One thing we know is that serotonin and dopamine---the neurotransmitters that we tinker with to help people with depression, anxiety and a host of other mood disorders---are the same chemicals used by the body for inflammation control and wound healing. Our bodies use up these chemicals when we are injured, sick, or in chronic pain. That means less of those neurotransmitters for the brain. So it's not surprise then that people who are chronically ill also often come up as patients with mental health needs. Not only is the injury/disease/pain itself difficult to deal with, but we're running at a neurotransmitter deficiency from the word go! Both the pain and the chemicals that support the body-while-in-pain need to be addressed.

But aren't their people out there who exaggerate and are really making things worse for themselves?
If there are, you should feel sorry for them. There are people out there with personality disorders where they will say whatever, including faking illness and pain, for all sorts of reasons. But the truth is, these people are so few and far between that for every one of them there are 40 people who are telling the truth. So really, if you want to err on the side of caution, err on the side that they're telling the truth. Even among children, (according to the book "Nurture Shock") tattlers only tell about one in six of the actual times adult rules were broken, and even then they wait until the most egregious act before they tell on others. Most people won't complain about pain until it starts to interfere with what they're doing. Would you complain about the rain if it ruined your plans? Probably. If it ended up being a tornado that ripped apart the fairgrounds? You'd definitely talk then. Pain is no different.

Well... I mean, are there people out there who can manifest physical pain because of an underlying emotional issue?
This one is a tricky one. As Ms. Veasley points out in the video, once, ulcers were thought to be manifestations of stress, and signs of a weak character. Now we know that it's a bacteria. There are people who spent thousands of dollars on psychiatric care who didn't necessarily need it. They were blamed for their own disease. There are plenty of doctors that think fibromyalgia is a hysterical disease, brought on by stress. However, they also thought Sjogren's Syndrome was rare until they made the second antibody test. Now they know it to be the second most common autoimmune disease. I wonder how many people diagnosed with fibromyalgia are possibly suffering from an unknown or undiagnosed autoimmune disease? It took years before I ended up with the right neurologist who said, "It's small fiber neuropathy causing your pain. You have an autoimmune disease. It's going to happen."

Now, on the same token, I do know that I can cause myself a stabbing pain underneath right my shoulder blade (and only my right shoulder blade) when I am really, really angry with someone and trying to ignore my anger. But in that case, I've usually been sitting in my fury for hours, so it's no surprise what triggered what first. Also, I get migraine headaches from stress, but strangely enough, it's the decrease in stress that triggers me. I learned this one after my father went in for emergency heart surgery. I was fine (which was amazing to me) the whole time that I was sitting there worrying and pacing. When I got the call that he was okay and let out that breath of relief and relaxation, it wasn't five seconds later I was on my knees in blinding pain.

But the point that Ms. Veasley makes that I think is all important, is that we just don't know that much about pain! We may think we can sit in judgement and tell other people that they just need to read this book and they'll be able to fix their problems! No!! The truth is, we are idiots about pain, our doctors don't get enough training in it, and we spend less money in research on it, even though chronic pain affects more people that cancer, heart disease and diabetes combined. We barely have any idea how the skin works, and we now believe the skin has a HUGE role in pain control.

Even if the emotions are manifesting pain, that doesn't mean we should dismiss the pain, or the person for "causing their own problem." On the contrary, if their nervous system is wired such that emotions do cause physical problems, that's a serious issue that needs addressing. We can do much to shore up the person emotionally, so that they don't fall prey to their condition so often, but life is difficult, and break-through moments are going to happen. My experience with migraines is like that. How exactly does one prepare for the stress of their father going into emergency heart surgery? The answer: you don't. Our only option is to fall apart an pick up the pieces on the other side.

All in all, I am very happy to see this video.

There is no Over, only Through

For the folks who aren’t chronically ill, think of every time you’ve been injured or severely sick. Perhaps a broken bone or pneumonia landed you in the hospital once. There were doctors and medications and instructions. You did everything they asked, all the while upset that you had to deal with this (rightly so) and wondering, “When, oh, when does it get to be OVER?!” Imagine that time. Remember being stuck in it, and all the things you couldn’t do, all the help you had to ask for, how much of an inconvenience it all was, how people had to be patient with you…

Now imagine all that, but knowing that it’s never going to be “over.” It’s never going to get better. That your body will only get worse given time. Those crutches are staying. Those medications are part of your life now. The doctors and staff at the ER will know more about your life than your hairdresser. You’ll actually hear those terms enough times to know how to pronounce them. People will stop being patient and wonder why you haven’t learned to live with it yet, even though the symptoms feel as fresh as day one, every time. Vomiting always feels like vomiting. Kidney stones always feel like kidney stones. What we do get better at, in the long run, is getting angry at it.

Our disease (literally dis-ease) is something we hate about our life. It’s like being shackled to a monster. We have to drag this ugly, demanding thing around with us every where we go! It’s never not there. We can sometimes forget for a little while (#epicwinning), but it always comes back. We hate it about our lives, and we hate it about ourselves. Even though the disease may be the responsible party, we, the person, have to take responsibility for it. “I’m sorry, I tripped over my disease. I’m sorry, my disease is throwing a tantrum. I’m sorry, my disease is a jerk and won’t let me come out to play…” Pretty soon, I feel like the jerk having to explain all the time…

But it’s really, really dangerous to look at my disease this way. Pretty soon, I’m hating me. And that’s the least constructive place I can be.

My neighbor is involved in mix martial arts and she has inspired me. She's a cute little thing and you never would guess she could kick your butt. I was looking at some of her videos from a recent tournament. How those ladies compete is not a natural way to move. Watching the competition videos with her she would point out her mistakes, "now if I was paying attention there, she wouldn't have gotten me into that lock...". After the tournament, she had mean bruises and a few nasty bumps on her head. But these injuries didn't make her a victim. They made her a bad-ass.

Pain and suffering isn't always a negative thing. If it is pain and suffering we have chosen to accept (as, say, a means to an end) then we're a lot less likely to feel tragic about it. It's part of the process, right? Just the price of admission... We all understand that good things generally have a price tag stuck on 'em in some way. Whether it's enduring hundreds of class-hours for a degree, or working your way up the ranks in the military, or meticulously watching your weight to look good for your 20th high school reunion, we understand pain is a part of life. So isn't it reasonable, then, to say that the pain and suffering of my disease is no different? Pain is pain. It's the same nervous system. It's the same brain activity. So why would the bumps and bruises I get from one activity could be seen as triumphant, and the bumps and bruises of another activity seen as evidence of loss? They get you the same funny looks at first... "What the hell happened to you?!"

I have a scar through my eyebrow from a freak croquet accident (a long story for another day). The doctor who stitched me up told me to tell everyone I was on a secret German fencing team, and to graduate, everyone must leave with a scar. This one is mine. A scar on a woman's face on its own could be something to really be ashamed of, but add the cool story and it becomes mysterious and romantic...

Part of the problem is the frustration. I used to be able to walk just fine, thank you very much. I could leave my car at home, walk 5 miles, go shopping, and walk home again... just because it was a nice day. Now I have to hope that a nice day outside coincides with a nice day inside my body so that I can enjoy the day! And I have to drive. And sitting for most of the time is mandatory. Bah!! That certainly takes the fun out!

I can compare my life now to the life I knew before I got sick, and it will fall short in a lot of ways. My dreams at night tease me with visions of a body that follows my commands, instead of commands me about... I can dwell on all of that and be miserable.

Or, I can envision that I am on a quest to earn my black-belt in illness arts... That the bumps and bruises are testimony to learning process and something to be honored by rather than ashamed of. Yes, I am dealing with a storm of invisible problems that makes it difficult for other people to have sympathy for me. But I don't look sick? Thank you! I was hoping it wasn't immediately obvious. Just because other people have difficulty recognizing my problems and accomplishments, does that mean I should devalue my efforts too? Absolutely not.

I may not be able to get over this. But I can find a way through despite it. I don't have to find the light at the end of the tunnel. I can BE the light instead.

When the cards are stacked against you... Reshuffle

I have heard people say time and time again that they don't know how I do it. "That is entirely too much for a person to handle!" I've had one say. And yet to me... I can't give it any credit. When I get taken over by these dire health moments, it's luck and instinct. It has nothing to do with me. I'm just holding on! I'm not clever or wonderful in these moments. I'm just a living organism desperate to keep living. I believe every one of you would do just as well, if not better, in my shoes. You'd get the job done, and probably with less whining and kibitzing! I honestly wish I could shut up about all of this and just live life, but I've been unable to do so. Instead I've turned it into a blog so I can fake that all my complaining is respectable. Funny thing is, I accidently found a way to make it successful. (Sometimes it seems the only way I find success is to trip over it.)

I started this blog because I was miserable. In my mind, I was a wretched thing like something out of a Dickens nightmare. I was huddled in the darkness, alone and doomed. Then the other part of my mind kicked in. This part of my mind was more like the Ghost of Christmas Present, gentle and joyful. She laid a hand on that wretched child's shoulder and said, "Now see here... You know you're not the only one going through this and you know you don't have it as bad as you could. If you want to learn how to do something yourself, try teaching it to someone else, remember? Now think... if you wanted to teach someone else how to get through this, how would you do it?" And like a dawn breaking, suddenly I wasn't in the darkness. I was in a lecture hall. I wasn't dressed in rags anymore, I was in a nice wool suit. And I also wasn't a child... I was an adult, standing tall.

The lecture hall I had in mind was very specific. It was the lecture halls I had when I was a science major at Saint Louis University. There, the seats slope downwards like in a theater, to accommodate class sizes of 300 students. But more importantly in my mind, I'd be lecturing from a point where the students look down at me. Yes, I'm the one lecturing. But I must always remember to present my teachings as a gift or an offering. Because in the end, it's not my lecture that's important. It's what the students can make from it that is.

Suddenly, everything I'd suffered was of value. These weren't just things I had to go through in my life. These were now things that I could use to help make someone else's life better. It wasn't just my loss. It was someone else's gain. And then too, my inability to shut up about it suddenly became a boon. It was no longer embarrassing that I was an unabashed exhibitionist, ready to share the details of my personal life with strangers. Now, I'm an activist, inspiring others to share their experience, strength and hope as well!

How the heck did that happen?

One thing I will give myself credit for is that I refuse to surrender. Sometimes, that's a terrible trait to have, especially when someone wants to be left alone! But like the title of this entry (given to me by my lovely cousin, Jeremy Diakonov-Curtis), I've decided to reshuffle the deck. The things that give me trouble I will use to make some good. The things I am terrible at, I will admit, so that others can know they're not alone. Like any human being, I have my weak moments. And like most people, I underestimate my own abilities and don't give myself enough credit.

It's difficult to be kind to myself in a world where I have trouble fitting in and keeping up. My random yelps of pain and discomfort are disturbing to people. That's not an unnatural response. And I feel guilty when I cause that discomfort in others. It would be as if I had picked my nose at the table. Not good! If you invite someone somewhere twenty times and it's "no" every time, pretty soon, you just stop inviting. It doesn't matter that the 21^st time would have been "yes." So I push myself to go out sometimes, when I know I shouldn't, because I want to keep getting invitations. It's these little, simple things that I fail at, that weigh so heavily on my soul.

Because from the outside, I know you can't tell the difference. I look fine. Stunning, even, sometimes. I don't look like there's all this going on in my life. There's no way to tell that I'm not just irresponsible and lazy. With other sick people, they know immediately. There are experiences that can't be explained, but you can tell by the way they talk and act that they've actually been there. There's a knowing. You can see the dark wisdom in their eyes. It's like a "you had to be there" conversation. Do you get the... And then the... Oh! And sometimes.... And have you ever?.. It's like meeting another member of a fan club, only it's a fandom that no one wants to be a part of!

This illness has made me into someone that I don't like, and that I have trouble admiring. I wanted to take a dream opportunity of being a live-in nanny for a friend of mine and her two wonderful daughters, and I just can't. I'm lucky for the time I can spend with them. I am in no way, that level of reliable, yet---to be able to care for children. It breaks my heart. I don't get to be the woman I want to be. I only get to be the woman I can be. I'm going to have to let what I want, go. I'm going to have to figure out how to be a woman I can be proud of, anyway. And like before, it's going to take seeing my situation in a new way.

So I've got to reshuffle. I've got to change things up to make things work. I can't judge my life now based on how I used to be able to live it. That's just not fair. But, in a way, I don't know that is fair. In a way, the only one who can determine whether I'm actually living up to my potential is me. And I'm not always good at being honest with myself.

That leaves me with only one answer.

FORGIVENESS

I'm going to have to allow myself a lot of mistakes. I'm going to have to eat crow, and worms, and bite some bullets. I'm just going to have to be okay with the fact that I suck sometimes. Sometimes you're an all-powerful wizard. Sometimes you're just a guy in a funny hat. But I've done this before, when I didn't even intend to. I've been able to turn my situation around and find the good in it, even with everything it threw at me. I stopped worrying about me, and started worrying about other people. Now that I've changed my focus, I'm not alone... Now, the fight isn't just about me... Now, I have the courage to stand up and lead the charge again...

Deal the cards. Let's play...

On the other side of madness (Part 2, Depression)

I'll admit it: I'm nuts. There are times when I absolutely cannot sync my view of reality with what is actually going on. I get a soul-crushing depression that tells me I am of no value, that I am actually a detriment to those around me, and I'm completely doomed. When it's going on, I'm a sobbing, inconsolable mess. If you approach me with an attitude that's overly enthusiastic, I'll even get mad at you for being too optimistic! How dare you not see how terrible everything is!! I'll plan out my suicide, short of taking any action, and each step I need to take for my desired outcome (fantasies about letters of explanation that this is my own stupid will, and no one's fault). I'll argue with myself in my head with myself about what I'm thinking, because I know this is a temporary lapse of reason that will eventually pass... I know I'm being irrational while it's happening. The voices in my head yell back and forth at one another like some debate on the floor of the House of Commons... Yeah... that's nuts.

I don't mind it so much once I get to the other side of it. It could be a lot worse. I could not have that little voice of reason in there that's able to step back and see, and argue for holding on. I could actually believe the doom and gloom in my head. I could believe I was justified in spreading my misery around. I could have the possibility of not reaching an 'other side.' Oh, yes... things could be much worse. When I do get to the other side, it's like a storm has passed. The calm is deafening. The stillness is eerie. Weren't we just holding on for our lives a few moments ago, hoping the house didn't fall down around our ears? Now it's blue skies and chirping birds... how did that happen??? Ah, the joys of faulty neurotransmitters.

There are a couple of things about this, beyond my own suffering, that bother me. One, why isn't there a medication for the treatment of acute severe depression? Long-term antidepressants help raise the day-to-day functioning, but they do nothing for acute episodes. The best we have is tranquilizers to make people so blotto we don't hurt ourselves or someone else. But that's not a treatment. That's a last-ditch effort! Two, how do I seek treatment for acute episodes without getting the stigma that I am irrational and incompetent---someone not to be trusted? I'm not nuts all the time. Just every once in a while. I'm aware that it's happening. I'm not completely delusional. I can be reasoned with. I'm just really, really sad. Take care of the sad and I'll be right as rain again.

We've separated the medical from the psychological. My mental health counselors love me. I'm a great communicator. I'm self-analytical. They know I've got a better handle on this than most. I'm a big girl. I know that feelings aren't facts, and I want to be responsible in my behavior. I have self-care practices that keep me safe for the most part. But sometimes, what I can do at home just isn't enough. I need the help of a professional. I don't need a psych ward. I'm not out of control. I just need something to turn off the stupid, destructive voices in my head. I know they'll go away eventually on their own. But I've got to be able to hang in there until then. That's difficult sometimes. We don't have anything available for that in our medical arsenal, and our doctors don't get training in how to deal with episodes like this. Once it's a mental health case, they'll wash their hands of the patient entirely, even if there are underlying biological problems. Doctors don't do wackos. That's the head shrinker's job.

So instead, I sit and sob at home, one side of my brain lamenting that everything is awful, and the other side of my brain going, "We've been the most successful recently than we have been since this started! Your doctors are listening and helping. You're to the point where you can do some physical therapy! People love your words! Come on, girl... things aren't that bad!" Meanwhile the other side of my brain cries, "But we've lost everything we loved in life! We can't do anything that brings us joy like before! It's all ruined!! I'm ruined!!! No one's ever going to love me! I'm broken and should be left out for the wolves!" (I'm spectacularly good at beating myself up....) Once the storm passes, I can sit and calmly say, "Yeah, $#!+ sucks... But we've done more with less. This is going to be difficult, but it's not impossible..." I am fully aware that the bad voices in my head are not truthful. They can still incapacitate me, however. That I don't like.

How do I help the storm pass? Sleep. Lots of sleep, showers, and not doing anything that requires making a decision. When my brain is out to get me, I will sabotage myself in a heartbeat. I will do something to make the situation worse, because I feel that life should be awful. And that's crazy! I know it. So I don't allow myself to do anything important. It's just a bad idea. It's better to just hermit for a while and try not to do anything (especially interacting with others!).

I'm lucky in that these episodes only last a few days at most, then I can pull it back together. If they were longer, I'd have to do some serious re-evaluation of my mental health care. Right now it's the equivalent of PMS, and that's something I can manage on my own. Still... it would be terribly nice to have a treatment instead of just coping mechanisms. It would be nice to be able to just brush off my shoulders and keep going. Sadly, that's not an option yet. In the meantime, I'll ride these Moments out as best I can, and just get back to business on the other side.

(Part 1)

Different Diagnoses - More than 100 medical disorders can masquerade as psychological conditions

I would argue that because it's become so "easy" to medicate anxiety and depression thanks to Big Pharma, that doctors frequently don't even consider the two symptoms. In some cases, I've run across doctors who want to blame my disease on the anxiety or depression rather than the other way around. There seems to be this pervasive magical belief that "bad thinking can make you sick..." Or that if there's a psychological component involved at all, well, now that you can check the little box on the diagnosis form, job done! Ship the patient to the head shrinker. The doctor's rush to fulfill his/her professional paperwork obligations, leaves them overlooking their patient obligations of a full investigation.

Confusing Medical Ailments With Mental Illness "An elderly woman's sudden depression turns out to be a side effect of her high blood-pressure medication.

A new mother's exhaustion and disinterest in her baby seem like postpartum depression—but actually signal a postpartum thyroid imbalance that medication can correct.

A middle-aged manager has angry outbursts at work and frequently feels "ready to explode." A brain scan reveals temporal-lobe seizures, a type of epilepsy that can be treated with surgery or medication.

More than 100 medical disorders can masquerade as psychological conditions, according to Harvard psychiatrist Barbara Schildkrout, who cited these examples among others in "Unmasking Psychological Symptoms," a book aimed at helping therapists broaden their diagnostic skills.

Studies have suggested that medical conditions may cause mental-health issues in as many as 25% of psychiatric patients and contribute to them in more than 75%.

[From Confusing Medical Ailments With Mental Illness]

If doctors were criminal investigators, they won't last past their first trial. In criminal proceedings, you're not allowed to just present a theory and then find the evidence to support that theory. All evidence must be collected, and all theories of the crime must be explored (even the ones that look like dead ends). Just finding a culprit isn't enough. You've got to prove it was that baddie rather than any of the other possible baddies out there.

But this would take an investment of time that doctors just don't seem to have. I don't know why that's the case... whether it's a doctor shortage, or bad time management within the system, or some sort of crappy incentives that drive our doctors to act this way. Whatever it is, patients are ending up the victims. We need to change this.