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.

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!

Remembering Our Worth

When we study history in school, we're taught the names of the big movers and shakers, the "important" men and women of the world. What you realize when you start to become a student of history, is that some of the most precious accounts we have, often called "eye-witness accounts of history," come from ordinary people like you and me. This is something I realized young, as my parents told me their stories of world and national travel. I was lucky enough to have traveled extensively before I became ill and through my recovery. I have traveled to the Hopi Nation, one of the oldest continuously enhabited places on this planet (the timbers in their homes have been carbon dated to reveal a construction time of over ten thousand years ago []), by one of the oldest nations on this planet. I have been privlidged to see their dances and been invited to sleep on their land.

And when I look at my father, still working so hard after all he's been through (his fear of hospitals rightly comes from a time he had to be quarentined on board a ship because of a case of Yellow Fever, and later in life he suffered three years of hives no one could explain... all while trying to attend college). He's seen an amazing age, and it is thanks to his interest in computers that I have had such an amazing career. We were talking last night about logistics and how he and I have similar experience of how to launch and invasion: his from his time in the Navy, mine from software and hardware products. It's the same theories because it's all about trying to coordinate the actions of many individuals into one large action over a wide scale.

This requires weilding two skills sets: the ability to work autonomously without oversight (working even if no one is watching), and the ability to coordinate with others, and often very brilliant minds coupled with hefty egos and personalities (getting along with exactly those types who do not play well with others). And all this networking must be coordinated through massive communications, often to different groups working in very different time zones. It requires an adherence to rules that can be frustratingly fluid, as flexibility is also required to adapt to ever-changing discoveries. In addition, people need to be organized in time and through time, kept on the roughly the same page and coordinating critical tasks at key points. All this results in what is known in the "biz" as: organized chaos.

Yet even with these similarities of knowledge, I also realize how much my father is a treasure: he traveled one of the last regularly operated ocean liners. He saw the first copying machine, the first microwave, the first VCR, and saw computers shrink from multi-roomed beohemiths into hand-held near-magical devices. He's seen me become a bionic woman, just like they had on TV, only to save me from pain rather than augment reality. But the marvel of that device: it had a battery, it was re-chargeable, and wearable inside the human body. What a creation to be witness to! And, too, he remembers growing up in the shadow of World War II, events that still shape the lives of every person on the planet today.

What amazing sights he has seen! And what's more, each of us is a witness like this too. Who knows who's letters are going to survive 1,000 years? Who knows what digital archeologists will find fascinating 10,000 years from now in the blogs and posts of our lives? Who will future historians look to, to be eyes and ears into our world generations from now? How will they find us different? How will they find us the same? Heck, what will these posts look like to me, thirty years from now? Hello, my future self! I'm happy to have written this down for you!

Which one of us will be discovered and renamed to suit their future language? How clumsy and archaic will my attempts at communication seem. Will any of this survive at all, or will some great catastrophy turn the lights ot on computers forever, causing all this knowledge to be locked away and forgotten forever? Who can say what the future holds.

Who can say what your future holds?

Is there an Opera sleeping in you? Is there a simple item you treasure that will become a family heirloom? Is there an act of forgiveness that unites estranged parts of your family? Or is there a phone call that rekindles a spirit of closeness in a friend? Much as this day might seem connected to yesterday, there is an impenetrable wall that exists between now and yesterday, one we can never step past. In each moment, we are given the opportinity to choose whether to keep in step with the past, or break with tradition and choose something new. Thought becomes word, word becomes deed, deeds become reputation, and a reputation becomes a legacy. Legacy becomes tradition, tradition becomes culture, culture becomes identity, and identity becomes preferences. Preferences become thoughts, and the whole cycle is born again anew.

What a miracle our lives are! What amazing things we can do! We can create such joy, compassion, and community together. So remember to celebrate your life and the lives around you. Give someone a word of praise or share a laugh just to help lift a stranger's spirit. We have such a capacity with our lives, in even the smalles things we do. Celebrate you, celebrate us.

We're worth it.

Zen & the Art of Chronic Illness

One way to learn how to "Live in the Now," is to get a chronic illness. I realized this after I called a friend of mine and invited him to come over. I had spent the night before in the ER for a kidney stone, and when he showed up I asked him, "So, what do you want to do?" He laughed. "Do? Woman, you're still wearing your ER bracelets and you're asking me what we should do? How about you REST?" The though never occured to me. I was okay NOW. Why did I need to rest? And that's when it hit me. It didn't matter what happened last night. That was last night. This was now. My chronic illness made me a better Buddhist than decades of awareness training. Who knew! LOL

And if I'm completely honest, my chronic illness has made me powerful in ways I never thought possible. All those ideals that i thought were so lofty when I was healthy, ("don't sweat the small stuff, and it's all small stuff," "don't worry about what hasn't happened, let go of what has," "first things first," "but for the grace of God, there go I...") are now regular habits and 2nd nature to me. I couldn't believe it, but here was my friend laughing at me, because I just had.

I thought that my life and my growth had been interrupted, and that I had become stagnant, trapped at an age below my peers. I thought that because my dreams of achievement had been put on hold, I had been put on hold. I thought that because my resume wasn't listing any new skills, I wasn't learning anything new or adding to my mastery of any subjects. I thought that life was passing me by, and that meant I was no longer a part of life. I thought that I had "nothing to show for" the time that had passed. I thought that because I wasn't climbing the social ladder, that I wasn't going anywhere.

Boy, was I wrong.

In fact, my disability allowed me to do what most people wish they could do, but can't! Normal folks have to turn to monastic living to achieve the separation from "the pressures of the world." I'd been given a golden ticket on a wild ride through horrors and wonders, tackling some of the scariest topics in life: what does it feel like to be dying? what's the worst pain I can endure and survive? do I know how to come back after a devastating blow? can I put my life back together if it all falls apart? can I tell when something is seriously wrong? do I know how to ask for help before it's catastrophic & beyond my control? can I swallow my pride/fear/righteous anger/shame, and do what needs to be done? can I man up in the worst of circumstances? can I take care of myself as I grow older and start to lose my faculties? do I have what it takes? can I keep myself safe?

I have answered those questions and multiple times. My ability to bounce back happens the moment I am physically able. I know I can trust how I feel and report it accurately and fairly. I don't respond to how I imagine things to be in my body, I react to how they are. I've had several examples of this, but one big ones stands out: I have no startle response when strangers touch me, or of I'm touched unexpectedly.

You know the kid's game: come up behind someone and tap them on the shoulder opposite of the side you're standing on, and watch them jump to see who did that? I've had strangers come up behind me and put their arm around my waist when I wasn't expecting it, and not only did I respond like I knew it was going to happen, but I let them move me to the side as though we were dance partners. What it actually was, was a bartender moving me out of the path he needed to take, but I couldn't know that from the back of my head. (There was also no alcohol involved!) It didn't feel like a stranger had grabbed my waist from behind. It felt like my husband had put his arm around me, it was that comfortable. I've had the same experience when struck by inanimate objects. I just don't startle easily anymore. It's amazing what it takes to make me jump. I've achieved a level of bravery I didn't know was possible.

Life didn't pass me by... I was learning lessons most people have to wait their entire lives to learn. I was being given such a deep understanding of the principles most spiritual practices hold dear they became part of my nature. My disease has been a spiritual guide through some of the most advanced topics in life. What I once feared and anguished over no longer troubles me. I intuitively know how to handle situations which used to baffle me. And even though I was removed from the normal path of life, I see how even my experiences can benefit others.

In my last year of college, I started freaking out. I didn't know what to do with myself or what my life's purpose was. I even went so far as to go to a counselor to try and figure these things out. For the longest time, I thought my purpose was to be a mother and help nurture a new life into this world, passing on the lessons I had learned. That dream will probably never come true for me. But in its place, a much larger life's purpose has grown: to serve the community of those suffering in illness and disease, and those who are dying or who long to die. Most people are terrified of saying something wrong when someone they know falls ill or starts talking about depression or suicidal thoughts. A lot more people freak out or run away completely. Not me. I'm just fine tackling those issues.

And as my friend's laugh reminded me, I thoroughly live "in The Now." Without even trying, I have found that present-moment focus that monks study for years to achieve. I am not attached to what just happened. I let go of the moment once it has passed and allow it fall from my sight, just like the autumn leaves fall to the ground and are carried away by the wind. What's past is what's past, what's now is now, and this present moment (and my current abilities in it) is all that matters.

Wow! Who knew?

U.S. Spends 40% less on Disability Benefits/GDP than All Other Nations

Less than 1% of people who are disabled are able to come off of disability and return to work. That number should not statistically be possible. Less than 1% who are disabled become un-disabled? That was told to me by a Social Security Administration official. And looking at the picture further, it's even less rosy.

According to a recent analysis by the Organisation for Economic Co-operation and Development, or OECD, the United States has the least generous disability-benefit system of all OECD member countries except Korea. The OECD describes the U.S. disability-benefit system, along with those of Korea, Japan, and Canada, as having “the most stringent eligibility criteria for a full disability benefit, including the most rigid reference to all jobs available in the labor market and the shortest sickness benefit payment duration.” In addition, the United States spends less as a share of its economy on incapacity-related benefits than other nations. In 2009 public expenditures on incapacity-related benefits comprised just 1.5% of U.S. gross domestic product, or GDP, compared to an average of 2.4% for all OECD nations.
The Facts on Social Security Disability Insurance and Supplemental Security Income for Workers with Disabilities— Center for American Progress (emphasis mine)

And no one is getting rich on disability. Before the Great Recession, the overall employment rate— which the Social Security Administration defines as: annual earnings over just $1,000"— was only 12% in 2007. That means 88% of people on disability earned less than $2.70 a day. When I was employed, my morning tea cost more than that! And yet there are still alarmist articles like this one from Forbes which claims:

Benefits that would replace a significant portion of their previously earned wages, while also qualifying them for Medicare, our generous health-insurance program for the elderly. Today, the United States spends around $200 billion a year, literally paying Americans not to work.

I don't know what you consider significant, but my income is only a little over one fifth of my previous income. Also, I am limited to making $1,000, or I loose my benefits. This, while also not underpaying me for my skills (per Social Security rules). That means I can only work 6.9 hours per week. A old girlfriend of mine who was in sales can only work 3 hours per week! You find either of us a job like that, and we'll take it!

So the difference between most and the poverty line is only $4,000, and I can guarantee you most disabled folks medical expenses are more than $4,000 in a year. My medications alone average more than half that, and I've turned down my doctors offer of a few medications because they were too expensive. and let's not forget how much dental care costs should anything go wrong with your teeth, because Medicare doesn't cover dental at all, never mind that loads of medications and conditions ruin teeth and can make wearing dentures impossible.

And Social Security rules are made to keep recipients at poverty levels, after first subjecting them to the most rigorous screening process in the world! Not only do they want to keep our group as small as possible, but they want to ensure our dependence on a system that keeps us in poverty! Less than 1% of small group to start ever make it. It's worse if you were disabled after 30 without having had paid enough FICA tax. That is, if you receive SSI along with SSDI benefits, you are limited to only $2,000 in assets whether earned or in gifts, a number increased only once, in 1989, and never adjusted for inflation.

What I see is a system that punishes its most needy, trapping them in a world where their suffering is only compounded by the constraints it places on them, saying essentially, "If you are truly sick (which we highly doubt in the first place), you don't deserve a route to success. The "Pursuit of Happiness" is only for people created equally, and since you are less than, you shall receive less than." As of March 2013, the average monthly benefit for a disabled worker was about $1,129, with male workers receiving $1,255 per month and female workers receiving $993 per month on average.

Yes, Social Security has programs for becoming "financially independent," but to take advantage of these programs, you are required to plan to quit using your benefits as a result of receiving this "hand up" on a timed progress line (usually 3-5 years), regardless of whether or not your condition has improved. Basically what they're saying is, we know that your disability should not be an impediment to you being a fully functioning member of society. We know that if we help you learn some new skills, get assistance setting up your business, or invest in some small ticket items for your future (never to exceed the amount of your monthly benefits), then regardless of the condition that disabled you, you will magically be able to make enough money to support yourself and no longer need disability benefits or Medicare. (Nevermind that it would have been impossible to get health insurance after being disabled until four years ago.)

If you made any sort of success for yourself prior to becoming disabled, you're penalized and kept from a career that was successful up until the time that your health went south. Social Security requires that you never ever charge less than fair market value for your work, even if you're providing a discount because you may not be able to meet deadline like someone who is health. That's not what matters. What matters to the Social Security Administration,kk is you're doing the same work, and therefore must charge the same as a healthy person would.

In this way, many people who would like to make themselves financially stable are scared into avoiding assistance services, because we are required to plan to leave the safety net of disability benefits, regardless of whether or not our condition has improved. Income, rather than illness, really determines if you are disabled in the U.S.

Meanwhile, the stigma that disable people are somehow cheating everyone else out of "hard earned" money (as if disability is "easy" money) by inflammatory articles like this one from Forbes, "How Americans Game the $200 Billion a Year Disability Industrial Complex" This title makes you think that people on disability make $200 Billion a year, but that's just not true. It's the Disability Industrial Complex that's worth $200 Billion. That number is not an entitlement. It's an asset value! And what's with the word "Game"? What an explosive word to use, nevermind that it ignores all the facts!!

There is some hope on the horizon. The ABLE Act would allow those on SSI to create health savings accounts and not be limited to $2,000 in assets. This is especially important to children on disability as they grow older. If you're disabled as a child, you've never paid into Social Security because you've never worked. Therefore you're on SSI and limited to never owning more than $2,000 in assets. Mind you, the estimated cost of raising a disabled child is around $1,000,000. Basically the government has said to disabled children: Don't ever try. You were born at the bottom and you will stay at the bottom. A disability should not create a class system in this society, but that's exactly what we've done.

Let's change this!

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

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

And that's not all.

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

But wait! There's still more!

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


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

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

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

Until then, thank you again.

My Most Fortunate Mistakes

I have done some doozies in my time, let me tell you!! But some of the things I have kicked myself for, repeatedly, have turned out to be exactly the right thing to do, and have saved my @$$ in the long run... I thought that losing Seattle was a mistake, that I was leaving my home... And I was. But that move allowed me the key piece of information that I needed to take better care of myself: that dry air does me better. That allowed me a larger window in which to function, and ultimately got me to the better place I am today.

I have "chronic foot-in-mouth disease," but that opened the doorway to a whole set of new friends I never knew I could have. I though once I had lost the love of my life, and it turned out I dodged a bullet! I mean, there are some crazy twist and turns in life that I never thought could happen, good and bad, but I'll tell you something that has always helped me was a healthy sense of how lucky I am.

Oh sure, I've wine the health lottery in all the wrong ways, but I still have a mind. I still have enough good in my life to build success. I am super high maintenance, but in the most low maintenance way. Really, it is stupidly easy to make me happy. If I could be self-sufficient, the world would be right in so many ways. It's important that I keep the faith until it works out.

Funny thing is, about giving up.... That doesn't mean that you can't start again. All of us get knocked in the dirt a while. It's not about that. It's about making the right decisions, and sticking by the beliefs that make you, you... Not matter what darkness in your life may fall. Be responsible, and the world will reward you. Hang in there, keep trying, and even the mistakes we make can end up being a blessing in disguise.

If we just though about it for ten seconds, we'd realize that the problems we had ten years ago are not the same as the problems we have today. Some have gotten worse, but some have gotten better, and there is something to be thankful for if we think about it long enough.

We are constantly evolving creatures. Heavy weights that used to hang on my heart have been lifted. Not because of any sort of spiritual experience, but just because I got new information that changed my perspective on everything. What I once though was a terrifying experience, I later learned was an act of bravery. Little things, where I though I had failed, but I hadn't. Things aren't always how I see them to be. And that can have terrible consequences, or wonderful ones. And what we think is terrible turns into wonderful and vice versa.

Things change. We change. My concerns at 30 we're not the same as they are at 40, and certainly not the worries I had when I was 20! I *am* getting better and wiser with each stride, even the missteps... Especially the missteps. Because it is only when we are in free-fall, sure that our ass is about to kiss the pavement any second now and we have two choices. The correct choice is NOT "brace for impact." That will leave you stiff, and bones will break. The trick is: RELAX.

Yes, I know unintended free-fall is terrifying. I know you want to reach out in desperation to catch yourself, but that can cause more damage than just a fall would, if what we grab for is sharp, hard, or unfit to support our weight. It's terrifying to realize the pain of impact is coming. We want to save ourselves from that fate. We want to cling to something that can save us, and can pull down our lives around our ears as a result. (Or worse, other people...) But as long as we try to resist the situation, we're concentrating on denial, instead of learning acceptance.

First, if I relax, I have less chance of injuring myself or others. Second, if I relax, instead of trying to say "this isn't happening!!!" I can instead say, "this is happening, what's my best option?" And sometimes in these terrifying moments, if we can relax, we can see that key insight we need to save our butt from the fire. A lot of times, I can tap into my dancing muscle memory and use my momentum to collapse on the couch instead of the counter, and I count my lucky stars. Other times, I just need to relax through the landing, and hope I don't hurt myself too bad. Still other times, I can think it's free-fall, but it's an illusion, and I'm really on solid ground, not falling at all.


-- Relax. When you know you're going to be reunited with the Laws of Physics in a harsh way, relax.
-- Look on the bright side. When everything is at it's darkest, that's when a candle shines as bright as the sun.
-- Realize that time changes things, and our biggest worries can turn around in an instant with just a piece of information we didn't have before.
-- Forgive yourself your mistakes, and realize that not all mistakes turn out like we think. Life is full of so many surprises, and we could be completely incorrect about what we though we did wrong.
-- Be true to people. This world is hard, and fairness something rarely seen. We should be good for the sake of goodness, because there's not enough in the world.

I'm so grateful for these mistakes... Sometimes it is wonderful to be wrong.

The Loneliness of Illness and Pain

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

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

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

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

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

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

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

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

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

Oh, but we aren't.

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

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

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

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

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

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

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

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

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

Thank you for understanding.

Pain Induced Insecurity

No matter how successful I get, #pain can make me feel lower than worms. I'm not talking about the migraine mood swings I've mentioned before. I'm talking about the feelings that really intense pain causes in an of itself.

The first question pain always asks is: "Why is this happening?" If there's a satisfactory answer (example: you're sitting on your leg and your foot has fallen asleep) then appropriate action is taken (you change how your sitting and rub your leg) and the pain resolves itself. Greater injury requires greater courses of action, of course, but most pain serves a purpose. They believe even migraine pain, since it's the 2^nd prevalent disease (second only to cavities) world-wide, serves a purpose. But no one has a good answer to the question why we get migraine pain. So it should be no surprise that when that pain occurs, without a satisfactory answer, what's left in its place is a gaping hole of insecurity.

Did I do something wrong? was it something I ate? Was it something I didn't eat? Was it my sleep or lack thereof? Is it the weather? Am I coming down from stress? Have I take my medication? Is the medication working? Would it help if I were in a cold, dark, quiet room? Or should I be in the shower with hot water and ice packs? Should I sleep or will lying down make this worse? HOW DO I MAKE THIS STOP???!!!

Usually followed closely by:

Why is this happening to me?

Which of course leads to:

What did I do to deserve this???

The answer is: Absolutely nothing.

But of course it doesn't feel that way. It feels like Hell. It feels like unholy torment on Earth. And when there's not good answer why, all that's left is a feeling of unjust despair.

That's why it is SO important to have a distant shore on which to set your sites. A distant shore is a goal, something on which you've set your sites. It has to be something for you and for others, so that other people need you, and you want to do it for yourself and your own self-esteem as well. It could be seeing your kids graduate, or health activism that you do online, involvement in your religion, or in a peer-support group (if you can't find one, start one!). Whatever works for you as a far and distant shore, make one.

The result is something to fight for, a reason to tell the insecurities, Hush up now. You're only temporary. You will go away when the pain is gone, and hopefully that means soon. In the meantime you mean nothing, because I have PLANS, see, and I'll be right back at 'em when you're gone.

But, oh, having just having come from that experience I can tell you I felt lower than a ketchup stain ground into a Manhattan sidewalk by a million pedestrian commuters. The only benefit is, it's Manhattan! lol Seriously, though, I'm so glad I had something to look forward to once I got well. I really like the thought that I didn't have time for this because I had too much to do! After so many years of being crippled and incapable of production because of pain, it's nice to have a shore I know I will be working towards when I'm well again.

When I reach that shore, I rejoice, celebrate, relax, and then once fully savored, I set another distant shore. ;)

Book Report #HAWMC

My favorite book at this point in my life is: Ownership Spirit by Dennis R. Deaton. This book is incredible. It opens by teaching the Owner/Victim Choice. continues by explaining Our Essence, that there is a difference between who we are and the choices we make. "As human beings, we each have a body; but we are not our bodies. We have emotions, but we are not our emotions. And, we have feelings, but we are not our feelings." This book is brilliant. Check out this bit in the chapter "The Thinker of Thoughts":

When we encounter setbacks or loss, we can learn to resist our almost reflexive Victim thoughts like, "Oh, no; here we go again," or, "Why does stuff like this always happen to me?" We can learn to open up the mental interpretative gap and enumerate options [read: we can detach and list our options]. ...When my knee-jerk reaction takes over and I sense myself turning to the "why me" laments... I say to myself, "Stop. What are your options here, Dennis?" The "stop" breaks the negative monologue. The follow-up question... triggers a constructive line of questioning.
[emphasis mine]

I love this bool. I love it because not only is it a call to arms to get up and take responsibility for our lives, but it recognizes that this stuff is difficult to do, and that tough decisions need to be made every step of the way to see the success we want. And this book teaches how to deal with ourselves and our own insecurities that will crop up along the way.

We can either appreciate what we have and build on it, or take it for granted and lose it. "Exercising Tough-Minded Ownership does not guarantee that every poignantly challenging experience will turn out to our liking. But, it does guarantee the way we will experience the [event] and it does determine the degree of strength we will leverage during those times." There are no Polly-Anna's here. This is realistic optimism at its best.

Along those same lines, everyone should watch this TED talk. It talks about how important it is to hold on to who we are no matter what happens. If you haven't tried this exercise before, do so now. Write out 20 sentences on a piece of paper starting with the words "I am..." and finish that sentence. Force yourself to only write positive qualities or qualities you are proud of in yourself. Do not finish any of those sentences negatively. This will help you identify the qualities you find important in yourself. And it will help you remember who you are, no matter what happens to you or the choices you're forced to make. Because as this video shows, both great success and great failure are as equally disorienting to the psyche. It's easy to get lost out there.

This great talk is called, "Success, Failure, and the Drive to Keep Creating":

[ted id=1983]

If you haven't heard of The Ownership Spirit, go check it out. And remember to always come home. I am your host, Pamela Curtis. I was not paid in any way for these endorsements. You can pick up your copy of Ownership Spirit through this link to Amazon.


P.S. I passed on Fitness Friday, because I don't really stay fit right now. I do have a word art picture, but I don't have any image software to capture pictures right now due to technical difficulties. I promise I'll get it up soon!

Reflections [LATE] #HAWMC

This #HAWMC challenge is about #reflection. Shown back to us, a reflection is not the thing itself, but its image. The Impressionist painters were all about reflections, having been influenced by the Japanese Edo artists and the Japanese "Floating World," a reflection of this Earth, in the clouds, where any manner of magical things can happen, wonderful or otherwise. Reflection can also be the literal thing: what we see in the mirror: the face that is shown back to us. It is also not the person themselves, but the flipped image of ourselves. As such, it too can be inaccurate---showing us as we seems to be, rather than we are.

With mental reflecting, it's no different. I am looking at the image in my mind and recalling the event. It is not the even itself. There are my recollections and my impressions layered on top of my memory of the experience. Recalling it does not mean experiencing the event again. Oh, sure, it can feel like that...and the intensity of emotion attached to that memory can transform you from calm to hysterical depending on the level of trauma involved. But it is not re-living the same experience again. It's a reflection of that event...a copy in my head. And that's a very important point...

It means we're in control.

Think about it...I could be happy, enjoying a beautiful day, when in my head something gets triggered and a memory bubbles up. It was a beautiful day like this when the planes struck the towers too... BAM! Suddenly that beautiful day turns into a nightmare like that day of horror back in September. It no linger matters that it's over a decade later, you're there now: reliving that memory, and all the emotions with it. You're no longer seeing today and in fact, you eyes are open, but you're literally seeing something else. You're dreaming while awake, seeing the past rather than now. And it all feels so REAL! But it's a fantasy. OUR fantasy, conjured up from our own mind. It's a recording that we're playing back to ourselves in 3D-stereo-full-immersion-virtual-reality!

Meaning: We can edit the tape.

This is what's so wonderful about the human mind: we can literally make our own happiness. If we have a horrifying memory, we can edit it! Now, I don't mean edit it to the point of fantasy. I'm talking about responsible re-evaluation. Yes, that full-immersion memory is How We Remember It Going Down... but what if we looked at it from a different point of view? What if we had some background information that put a new perspective on everything that happened? Like in the TV shows, what if there's some secret that only the audience knows that changes the meaning of the entire episode?

I'll give you an example.

I was in therapy with my counselor, telling her about a particularly terrifying experience I had as a child. I was awoken in the middle of the night to hear my parents creaming at one another. I remember their voices were so loud it was hurting my ears on the outside *and* the inside. The house was dark except for the light on in their room, but the door was shut, so it was just the tiny line of it from beneath the door.

I walked that long scary hallway as they were yelling and opened the door. They didn't notice me at first and kept yelling. I walked up next to them and yelled: "STOP! Stop fighting! Mommies and Daddies aren't supposed to fight!" and I broke down crying.

At this point my counselor gasped and said (before her brain was able to stop her): "Oh how brave!!"

Cold water splashed all over me (not really, but it felt like it!). Brave? OH! Oh holy crap! YES!! I was BRAVE in that moment! I was a child confronting screaming adults and telling them to get their act together! I didn't even consider that at the time! I was a kid! I was terrified and though I was going to die because my family was falling apart. I never stopped to consider that what I was doing was brave. That didn't occur to me.

The fear of that experience melted away in the light of my adult truth: that was an amazing thing I did as a child, and I can be proud and amazed at myself and my accomplishments. What a WORLD of difference!

So what about that awful memory you have? Take a look at it again, but don't re-live it: look at it from a different point of view! See if there is some new way to look at it to change it from awful to awesome.

The reflection is not reality.

It's the floating cloud world where anything can be real. It's the tape in your head that you can re-record. It's the 3D-immersion-virtual-reality that YOU have the power to edit. It's the painting in your mind's eye and the paintbrush in your heart. YOU have the power over your reflections.

What do you see?



P.S. Sorry for the lateness... It took a while for me to write this post. I had to reflect on the topic a while...LOL! *rimshot*

Crossing the Streams

I like to #compartmentalize. I don't like keeping secrets, because secrets kill, but I know that not everyone understands, not everyone believes, and not everyone wants to hear what I've got to say ALL the time, no matter what. (I'd either think you a bit strange or want to marry you, depending on the moon.) As such, I have all sorts of different personas out on the Internet. There's my personal side, my professional side, my family side, my private bedroom side, my health side, my artist side... Lots of little compartments where I can stick all my stuff and not have it overwhelm my audience. Unfortunately, sometimes those streams get crossed, and all the boundaries I set up so nice and neat come crashing down, exposing me to all the world.

To quote Tech N9ne, I'm fragile. I never thought I'd be this way, and in fact tried my best not to be! My father used to constantly tell me "grow a thicker skin!" As an adult, I finally got the chance to snap back, "Be a little more considerate!" We never had that argument again! Lol

It's so difficult to explain to people that while, yes, I do come off bipolar some times, no it is not that (not that there's anything *wrong* with being bipolar, that's just not the right diagnosis). It's my migraines causing hypomania and mini-depressions when my supply of serotonin is flushed from my body. It's difficult to explain that, yes, though my case is unbelievably horrible, that doesn't mean it's fiction, or that I'm exaggerating....

I'm sensitive!! Not just emotionally.... I mean, quite literally, I am extra-sensitive, even more than most folk, at a physical level. I also have, strangely enough, a super high tolerance. So while most people would normally keel over, I'm able to sail on as though nothing is wrong, even though the tests all come back supporting my claims. Once again, I was told that I would not have an abnormal test result. Once again, I did. And not only that, but I was right in thinking I had kidney damage when everyone else was telling me "no way." There are some more tests that need to come back, but on the whole, I *should* be able to move forward with this... But yet again, I'm getting nothing from my doctors.

Does an MD carry with it an allergy to admitting "I was wrong"? I mean, seriously! Science teaches us if the theory doesn't fit the facts, change the THEORY. Don't deny the facts! The cortisol stim test showed an abnormal response. The thyroid tests once again showed an abnormal response. My kidney tests and my salts all showed abnormal results. And I can't get an endocrinologist to return my phone calls.

Understand this: I did not make things this way because it's how I wanted it, but I am certainly going to try to make the best out of a bad situation. It's infuriating how nonchalantly other people can destroy our lives with a simple comment. You wouldn't think that one person's opinion could have that much impact, but given the right circumstances, oh yes it can.

I guess we all make fools of ourselves every once in a while. It's okay to crash & burn, so long as you can recover from it too. I am certainly no exception to that rule!

The BIG Sleep Myth

Did you know that it's completely UNNATURAL to sleep for 8 hours a night? Think about it... no other animal sleeps like this, and it would be extremely dangerous if it were actually required! Your "sleep issues" may not be issues at all, but a complete misunderstanding of how our bodies REALLY work. Not only do scientific studies prove this to be true, but back before the Victorians and artificial light, it was considered natural to have a First Sleep, followed by an hour or two of wakefull ness, followed by a Second Sleep.

His book At Day's Close: Night in Times Past, published four years later, unearths more than 500 references to a segmented sleeping pattern - in diaries, court records, medical books and literature, from Homer's Odyssey to an anthropological account of modern tribes in Nigeria.

Much like the experience of Wehr's subjects, these references describe a first sleep which began about two hours after dusk, followed by waking period of one or two hours and then a second sleep.

"It's not just the number of references - it is the way they refer to it, as if it was common knowledge," Ekirch says. [http://www.bbc.com/news/magazine-16964783]

How many people are shoving "medicines" down their throat for a problem that shouldn't be seen as a problem? And how much healthier would we all be (including shift workers, who have a notoriously difficult time switching between schedules) if we recognized our true nature?

Makes you wonder what else we might have wrong, doesn't it?

To all things, there is both success and failure

We can look at this in a binary fashion: to have a winner, there must also be a loser, so in at sense you can never have one without the other. But beyond the singular event, there are also problems of success, and benefits of failure. That is, once a win is accomplished, that introduces an new set of challenges, obstacles, trials and tribulations to face, along with the possibility of failure in these new things, right on the heels of our success. It can take all the fun out of winning! On top of that, lose often enough, and you're quick to learn that losing isn't as awful as everyone makes it out to be either... Well certain losses cannot be recovered from, this is true. But just as before, losing can in fact create a greater wisdom, a greater understanding, a surer footing, clearer objectives....

Each one of us is different not only in what we can and cannot do, but in what we do and do not desire! Our experience shapes us in peculiar ways... My favorite dog, Sargent, got sprayed by a skunk when I was a child, a smell I know repulsed me before from scratch-n-sniff stickers, but afterwards carried a memory of love and comfort. That I associate good things from noxious smells is weird to a lot of people. But that's only because they don't have the experience linking the bad smell with a good feeling. If they did, they'd feel as I do. I have cousins that love the smell of manure because it means horseback riding adventures to them. Other cousins of mine love the smell of motor oil and exhaust fumes because that means go-kart racing. Any of those smells I could do without!

My point with all of this is that, in order for us to be able to decide what we call failure or success, what we call a problem or an achievement, depends largely on what we desire, and those desires may not be logical at first blush....

See, I've been feeling badly lately about letting my spleen lose on my Facebook page. There were friends who turned from me, turned on me, and turned towards. Though my intention was only for the latter, there are always consequences, seen and unseen. I understand that some people just can't listen to what I have to share and that's fine... Most of us have plenty to deal with on our plates, and cannot bare to hear suffering of that sort. I've experienced the same! It doesn't mean that my heart doesn't go out to them, it does.... I just can't listen because of how fragile a hold I have on my lot!

To the ones who turned on me, I get that too... But I'd like to point out that the object of your fussiness is not me, personally (as much as it would seem to be). Rather, the one you really should be fussing at is my disease. That's the only distinction I want to make. Many of your complaints are my complaints too!! And, unfortunately, I'm in no better position to address them than you are. You just have the luxury of voting with your feet. I'm stuck here. Please understand that I am not some all powerful being who has made things this way because it's the way I want things to be! You of all people should know how difficult it is to get what we want.... So please don't mistake my tolerance of crap as a desire for crap. Just because I accept a crappy situation and try to make the best of it doesn't mean I was happy to be invited in the first place. 

And to anyone out there who thinks: "I'd love to complain about my health and not have to work, too!" Let me point out a few facts.... Do you think I make friends or win applause because I'm complaining? Do you think people rush towards me with a hankie and soothing words of comfort? What happened the last time you complained of a health issue? We're people lining up at your door to provide comfort & aid? No! So why do you think I'm getting any of those things? 

Not want to work, are you kidding me? Why do you work, hmmm? So you can afford your nice lifestyle, right? Now... What am I missing because I can't work? Oh yeah! That nice lifestyle! Just because when you take time off from work it's called a vacation doesn't mean that I'm on vacation while I don't work. Are you kidding me? I can't afford to live on my own because I don't have a working income! How on earth do you imagine this is some non-stop vacation for me? Do you know how awful daytime TV is? No, because you have "better things" to do. Don't you think I wish I had "better things" to do too? 

The same reason you have for not quitting work and becoming a bum is how you know that becoming a bum wasn't my choice!! You only have to look at my track-record to see that 1) I don't shy away from things simply because they are difficult 2) even when the going is tough, I can see a project through successfully to completion 3) I am damn good at what I do and win praise easily while enjoying the whole process 4) the only thing I complained about when working was my commute 5) I didn't wait to go back to work once I got pain control, I started that first month I knew the medication was working...

All of this evidence flies in the face of my detractors and proves their theories are phantoms! 

And the reason I share these things LOUDLY, even though that often works against me is because, this ain't all about me, baby!

I want everyone else dealing with chronic illness to know it's not just them. I want everyone suffering from these accusations to know that it's not their fault their being accused in this way. I want to help my community of chronic illness survivors and #thrivers to know! beyond a shadow of a doubt! that they are NOT alone, and they don't have to be alone... That I am there with you, even if I can't be physically with you.... And I at least understand that you are doing your very best against terrible, terrible odds. I see you shining in the darkness!

And even if you falter, as I have--- without grace and with deplorable behavior--- know too that even if it wasn't okay, even if we deserve that glowing brand of shame on our chest... Even if they were right to lock us up and throw away the key... There is STILL something of value in you, that you can take comfort in and be proud of! All it takes is the right moment to see, the right stroke of luck to unlock a talent you never knew you had, the right opportunity to change your life forever into what you've always wanted it to be and more...

It may never come to pass, but that doesn't mean it's not there. It may be hidden treasure, but that doesn't mean it's not treasure!

As an example, I'd been working for months, close to a year on a project, with a couple of people I knew. My life had been turned upside-down for this project, as unforeseen obsticles diverted us for. Our original course of action. It all came to a head one night when we put everything we had into this launch, hoping that we could get this project to lift off... Only to discover we'd all been working on a lie. It was a complete and total fabrication. There was no project, there was not team, there was no target, there was no spear to throw at the target... It was all... Lies.

I went to my teacher dumbfounded, and horrified, because my graduation had depended on that project.... I though for sure since the whole thing had been a farce that would mean a nullification of my certification and redoing all the work, only to find out, no, I was fine, my grade was never dependent on the outcome anyway.

"But the whole thing was a lie! How can you judge my ability to hit a target if there was no target or even a spear to throw?"

My teacher replied, "Yeah, but you threw..."

Much like having an education, just because I'm not writing out equations doesn't mean I don't know math or chemistry. I can have the ability to do something, and have that ability have value, even if I don't express or use that ability. As much as it is useful to have our computers work in binary--- yes/no only--- doesn't mean that's how the world works! There's yes, no, maybe, both, neither, almost, not yet, and not anymore, as well as a host of other conditional states that we recognize. So too with ourselves, rarely are we either good or bad, useful or burden, lovable or bothersome, winning or losing... Usually we're a combination of all of the above!

So when I despair that I'm stuck and I don't know how to fix things, and I'm howling to the moon.... I most likely am absolutely right! But you and I both know the story doesn't end there. Time, that one constant in our lives, changes things. Including my mood! Lol So thank you to those who have been patient with me.

I live my life openly, honestly, willingly so that you can know you're not alone and not as bad as you think you are ;)

Blessings upon you!

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!

Perspectives on Heroes

What a lot of people don't realize about chronic illness is it's often a sign of a medical success rather than failure. After all, we're still above ground. My disease should have killed me 11 years ago. I'm living a life a should not have been able to. And now that I've got enough pain control to allow me to enjoy that life, I, too, can finally call it #epicwinning.

Oh sure, my life is nowhere near what I thought it would be when I reached this age. Nowhere near. I was in a house yesterday that felt like where I aught to be rather than where I am, and it made me sad. But then I have to put things in perspective: I have a chronic illness. I'm a not a victim, and my life was not cut short, but it sure got close! So is it any surprise that where I though I'd be doesn't match reality? Not really. Who plans on getting deathly ill?

"Then after college I though I'd get a chronic illness, because you know, Paris in the spring just can't compare! And you're never too young to have a major surgery!"

At some point we've just gotta laugh because you realize we're doomed no matter what. It's just what flavor off doom do you want to have? Sometimes it's just gonna suck no matter what. At which time, it becomes pointless to focus on the fact that it's gonna suck. You've got to look at what else you've got.

I was playing chess with a friend of mine, and he was sure he had me beat. He had put me in check a number of times and was closing in for the kill. It was hopeless. I was trapped. There was nothing I could do. So I took a deep breath and I pulled my eyes from the conflict. There wasn't anything I could do there, but perhaps elsewhere there was something I could do to slow him down. And then I saw it. He'd left himself completely open! In that turn I was able to put him in check, and two moves later it was checkmate. I'd won! He was so surprised and upset, he started yelling in the middle of the coffeehouse! It was priceless.

Success isn't a destination far in the distance in front of you... it's what you leave behind you. It's what you're able to build up over time to reach your goal. The goal doesn't hang there in the air. It stands on everything you have built up to it. And every part of your life counts, even the parts you think don't matter. Sometimes especially the parts you think don't matter. Or the parts you're ashamed of and think you have to hide... those most often are the parts that make you awesome.

Think about it---we don't love our heroes because they had an easy path and waltzed carelessly through life, winning every battle. We love our heroes because they have fought and struggled and overcome great difficulties. We value the struggle, even if we don't like that we're going through it at the time. We appreciate hard work, our own and the work of others, because it's work. When we're struggling it's easy to get so focused on the battle we're in, we forget the other side of things. It's easy to get so lost in the doom that is approaching, that we don't look for opportunities elsewhere. But if we're lucky enough, we catch one in time to save our @$$. And that makes the best hero's story: snatching victory from the jaws of defeat.

The fact that I'm sick isn't what's important. Everyone has something with which they struggle. Mine just happened to take this shape. That my life isn't what I though it should be should come as no surprise. When these kinds of things happen, of course life is turned topsy-turvy. I can't expect to have the same kind of life my peers have. But that doesn't mean my life hasn't been successful. I've been plenty successful with what I have had to deal with, and my past is my proof.

I cannot compare what I've been able to do with that of someone who hasn't had my struggles---it just isn't a fair comparison. And if you were to look at my life in full perspective, I'm a hero on a mighty quest: struggle is the name of the game. I cannot say that just because I see my doom barreling down upon me, that then means I am doomed. Victory can come from the most unexpected places, in the most unexpected ways. I haven't lost at life because I've got a chronic illness... I've won against death! That's the most we can ask of any hero.

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!

Opportunity of a Lifetime - HappyHealth

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

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

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

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

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

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

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

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

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

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



I look forward to hearing from you!!

My Secret Triumph

I've read a lot of posts in online communities for people who have chronic health issues. One common complaint I hear is how other people don't understand how hard it is for us to do even the most simple things. In their frustration at their loss of ability, they feel sorry for themselves. I've been there. I've done the moping. I totally understand. Getting a chronic illness sucks! But there's a way to flip that around. There's a way whereby we can look at our struggle over easy daily tasks and we can realize that we are MIGHTY. By the very fact that it is more difficult for us, we can then take pride in doing even the most mundane things. It's all a matter of perspective.

And that's my secret triumph. Most people have to go out and run marathons, or hike a 14,000' mountain to do a great thing. I just have to get the laundry done (now there's a Herculean task!). People don't understand how difficult that can be. Which is fine with me. I can take pride in it myself, knowing that I have been stunningly awesome every time I can get that simple task done. Oh, sure, for them it's easy. But then, they have an easy life without chronic illness. That's no big deal for them. It is for me... and for that reason, I can have an amazing amount of pride in myself, just for getting through my day.

I don't have to write the next great American novel. I don't have to conquer the elements in some great quest. I don't have to discover the cure for the common cold (beer) or find the cure for cancer (cannabinoids). I just have to wake up in the morning and take my pills on time. Right then, I've already saved a life for the day: my own! Everything after that is gravy.

If I am able to achieve some semblance of "normal," then that's incredible. I have to obey a lot of very strict rules, and do some really crazy things in order to reach normal. I have to get 11 hours of sleep on work nights (plus Friday, because I'm usually at my rope's end by then). That means going to bed at 7:30, so I can be up at 6:30 in time for work. It takes me two and a half hours to get ready in the morning, because I first have to get all my medications in my system and get them properly digested before I can do anything else. After they kick in and start working (usually an hour before I notice the effect) then I can get started on my day like a normal person (get dressed, brush my teeth, etc.). By the time I'm driving to work, I've already accomplished a miracle! My day hasn't even started, and already it's amazing.

Then, every day that I'm able to come to work and have people think that I'm normal just like them... that's another miracle. I'm able to manage my symptoms through my day so that they're largely invisible to everyone else. I'm able to complete my work, and no one else is wise to the fact that I'm fighting to keep this up. I'm fighting... and I'm winning. Every day is a struggle, and every day, I work to make it seem like it isn't there at all. My success depends on no one else knowing how hard it is, as though it's no bother at all.

My self esteem comes from my ability to make my problems no problem. It's a lot of work!!! And each and every day I can be proud of myself for my efforts. No one else knows how much I struggle, and I like it that way. The less they know about my disease, the more successful I am. Like the graceful swan who is gliding on the surface and paddling like crazy beneath the water, so too do I make all this struggle look effortlessly beautiful. That's my secret triumph: I make this look awesome.

So, rather than feel sorry for ourselves for all the extra things we have to go through each and every day (not to mention the crazy drama that pops up as a matter of course), my suggestion is take all of that anger and turn it into pride. Yes, it's difficult to the point of tears. But if you can manage it, and do so without the tears, well then, look at how mighty you are! If you can put up with hellfire and brimstone, and do it with a smile and a cheerful attitude, there's no better way to cheat the devil. Be proud of every little thing you can do, because these diseases want to make it so we can't. Hold your head high, just for the fact that you endure. That alone is mighty enough.

But I don't look sick? Thanks! I work very hard to keep it that way. ;)

If you seek a teacher, one will appear

I have recently made the discovery of a true gem in Denver, and that is, a minister I can believe in. He's highly intelligent, has been deeply wounded in the past and has recovered from it. He has amazing spiritual strength paired with a wisdom and humility rarely seen. I am in awe.

He answered my question: "How to you deal with being cast out of paradise?" His answer was: "How can you bring paradise to other places except by leaving it?" I was dumbfounded. And I'm rarely caught speechless.

So I put to him my question of how to get out of bitterness. His answer was, "How do we know our good is supposed to reach this generation? How many people were never recognized until centuries after their death? Do you think Harriet Tubman would believe there are statues of her all over the place? Not on your life. The point isn't what happens now. The point is what happens in a scope we may never have the ability to comprehend, it's so grand. But why should that stop you from trying? How else is it going to get out there if you don't put it there?

I challenged back that, sure, I kept trying. But I didn't do it with hope in my heart or any sort of grace. It was raw stubbornness that kept me going and now that I've reached success it's come too late. It's like the scene from The Last Unicorn:

MOLLY GRUE: (gasps) No. Can it truly be? Where have you been? Where have you been? (yells) Damn you, where have you been!?

UNICORN: I am here now.

MOLLY GRUE: (laughs bitterly) Oh? And where were you twenty years ago, ten years ago? Where were you when I was new? When I was one of those innocent, young maidens you always come to? How dare you, how dare you come to me now, when I am this? (She begins crying. The unicorn puts her head in Molly's lap, and she caresses it.)

SCHMENDRICK: Can you really see her? Do you really know what she is?

MOLLY GRUE: If you had been waiting to see a unicorn as long as I have...

SCHMENDRICK: She's the last unicorn in the world.

MOLLY GRUE: It would be the last unicorn in the world that came to Molly Grue. (She sniffs.) It's all right. I forgive you.

Why did success come now, when it's too late to fulfill any dreams I had? And he said, "Where are my limitless resources to fulfill the dreams I have? It's not about fulfilling our dreams the way we want to, it's trying to figure out how to fulfill them in a world that's based on limited supply---what good can we still accomplish anyway?"

And I knew he was right. I was robbed. There's no doubting that. I was sorely treated and greviously wounded in a way that will haunt me the rest of my life. But my capacity to love and to show love has in no way been diminished. My ability to teach and to help others and spread goodness in the world has not been diminished. And I may never know the true extent of my impact on the world, but no one really gets to know that.

"So given the choice of living in regret of the death of your dreams, and making the best of what's left to the greatest possible good, wouldn't you want to try for the latter?"

Yes... Yes I do.

Alright 2013... My loins are girded; my head's held high. Bring it!