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.

The Dangers of "Positive Psychology"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We would be wise to be wary.

WSJ Infographic:

Video:


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

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!

It's Official*! I Am No Longer Disabled!!!

Well, folks... I've done the impossible: I have left the the disability rolls! According to Social Security, "less than one-half of one percent of Social Security Disability Insurance (SSDI & SSI) beneficiaries" become 'non-disabled' —42 USC 1320b-19, Section 2(a)(8). Who da man? I'm da man! But this fact hides a difficult truth: my life is still far from normal.

I am amazingly happy, and I am amazingly grateful, but if I said I didn't mind that I'm still sick, that would be a lie. I do mind sometimes. It's difficult to live in the between. I'm caught between a world where healthy people are expected to be able to fulfill certain obligations. But I'm still not healthy, so I often fall short. Sometimes I feel like I've pulled off exactly what I set out to do, I have made this look awesome... but now people expect me to be awesome as well, and that... I'm not so good at. Heck, I struggle to do "normal people things," like stay on top of the laundry, keep up with my bills, etc. I can do work, and a little bit on the weekends, and that's it. I've learned the hard way that I have to include socializing in there to fulfill my psychological needs, otherwise, I end up feeling like I have no friends, crying on the couch with a blanket and a half-gallon of ice cream!

So I have to keep everything in a fine balance, and I have to obey strict, self-imposed rules, otherwise this whole delicate machinery of my life comes crashing down. I've set things up like a Rube Goldberg machine* in order to achieve what I have. The time I put into the doctors allows me access to the medication I need to control my pain, which allows me to work, which allows me to afford the medication. The medication side-effects require that I get 10-12 hours of sleep a night. Work requires that I be there at a certain time. Which means I have a set bedtime in order to get to work on time. That means I also can't blow my sleep schedule on the weekends, otherwise it's too difficult to get back on track for Monday. That limits what I'm allowed to do, and who I'm able to see, on top of the limitations placed on me by my disease.

My disease means that I don't wake up like normal people. Most people have cortisol kick in around 4am to help them start the waking process. My body doesn't do that because my cortisol comes from a pill. The way I wake up is with adrenalin, because my body has realized that I'm not producing cortisol, which means I better wake up, or I could die! So my fight or flight mechanism is what wakes me in the morning. In a friend of mine who has adrenal insufficiency, she wakes in fight mode. She's even woken up kicking and punching. Me, I wake up in a terrified panic. I can't even use an alarm clock, because that freaks me out so bad I would need a pill to calm down. So I wake up to the gentle sounds of talk radio instead, and skip the chill pill. And my disease also means that I must take my pills at a set time in the morning, so that I'm able to function properly for the rest of the day. It's all very complicated and intertwined.


Rube Goldberg Machine
I was still so proud to make that phone call to Social Security. I was also terrified, because this has been my life for the past decade, and I've gotten accustom to many things, but also very proud. I still shake my head sometimes in disbelief. I've done it. It is possible. I've put my life back together again. I'm walking among the working, and I'm one of them. I pay taxes, instead of being on the government doll. I'm a contributing member of society again! I have made my crippling disease manageable. Wow!

So my message to you is, keep trying. If you have to stop and stand back and re-evaluate some things, that's okay. I've taken a year off from my medical struggles to rest and recuperate. Sometimes that's what we need to then charge back in there with all our might. But keep trying: the impossible is possible. It make take years and a strange, wandering route, but you can get there. I did. I'm living proof (pun intended).

Less than one-half of one percent (<0.5%)... but I did it!
Shiny!!!!

[*Update: Nope, didn't make it.]

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. ;)

No Happy Thinking Required

I'm bringing this post back from the vaults, it's a post from the very early days of this blog, when I had little exposure. Now that a few of you are listening (*waves*) I'd like to revive this piece.

First, let me introduce you to this internet gem... (edited for work-safe content)

A 23-year old medical student makes lists of all the tasks that he must accomplish each day. He spends hours studying and refuses to go out with his colleagues even when there are no tests on the immediate horizon, preferring to spend his time looking at specimens in the laboratory. He keeps meticulous notes during all his classes and prefers to attend every lecture, not trusting his colleagues to take notes for him. He is doing well in school and has a girlfriend who is also a medical student. Which of the following disorders does this student most likely have?
A. OCD
B. Obsessive-compulsive personality disorder
C. Obsessive-compulsive traits
D. Schizoid personality disorder
E. Paranoid personality disorder
[and written in] F. F*** you, that sounds totally normal. A**hole.
[Full article: http://www.globalnerdy.com/2011/05/04/thats-not-ocd-youre-just-a-slacker/]

Now, let's look at this little gem picked up from a site offering professional services (yes, for money) for coping with chronic pain ...

Catastrophic thinking involves magnifying a negative situation so that it seems more negative than it is, worrying and ruminating about it, and holding pessimistic beliefs about the future. It makes coping with pain more difficult.  Here are some examples:

“My back is killing me.” (magnification)
“I can’t stop worrying about what my headaches might mean.” (worry and rumination)
“No treatments will ever help me.” (pessimism)
“My life is ruined because of my pain.” (magnification)
“I spend most of my time thinking about my pain.” (worry and rumination)
“I’ll never get better.” (pessimism)
Catastrophic thoughts don't help you cope with the pain.

*rolls eyes* Here's my take on the above:

My disease is killing me. I carry an emergency shot and wear a medic alert in case it tries to suddenly, which it has. Ain't a magnification if it's true. And I have to remember how fragile I am so I can act with the appropriate care. That's just responsible.

If I stopped "worrying" about what my headaches might have meant, I'd be dead now, thanks. I'm going to continue to "worry" about my symptoms, because symptoms mean there's something wrong, a**hole! (to steal from the line above...)

No treatment is possible right now. That's not pessimism, that's just a fact. Soon as that changes, I'll do a dance of joy, but until then, I've got to live with reality... not "someday."

My life has been ruined because of my pain. My career? Over. Finances? FUBAR. Credit score? Ha! Having progeny? Not possible. Scars? Lots. Irreparable damage to my body? You bet. That life? Gone. I will never be the same. Again, not a magnification if it's true.

I do spend most of the time thinking about my pain. But that's because I'm usually IN pain. I use denial as much as possible, but I can only do so much of that safely. And there are other responsible reasons to think about it even when I'm not in pain. Worry and rumination aren't inherently bad things!

I'll never get better. This is both true and not true. I'm not going to get better but I can live better. This is a degenerative disease. The only thing I can reasonably hope for is better management of my symptoms. But it's like throwing a wet blanket over a radio: sure it muffles the sound, but the problem is still broadcasting loud and clear. That's realism, not pessimism.

*sigh*

The problem with these well-meaning sites is that there are going to be people, like me, who look at that list and think they're failing somehow because they can't get to these so-called benchmarks of psychological health. But it's not a failing of ours... it's a no-win situation imposed by our disease. 

So let's try rewriting that list a bit more positive-realistically...

My disease is killing me, but it's been losing so far! Ha!

My symptoms may mean something important. I will trust my intuition and work with my health providers to create a constructive plan in addressing them. 

No treatment may ever help me, but I can keep an open mind and give new ideas a chance to work. Even if no treatment ever does help me, I can say that I tried and find other constructive things to do with my life in the meantime.

My old life was ruined by my pain. So I'm making a new life that thrives despite the pain.

I may spend most of my time thinking about my pain, but I make sure that it is within reason. If it is to prepare for, manage, prevent or resolve my pain, that's responsible thinking. If it's to look for new opportunities or advancements in pain treatment, that's okay. But I will make sure I also have information on current events so I can keep up with polite dinner conversation.

I'll never get better, but I don't have to. I can do the best with what I've got left and make this look Awesome.

I lived for years without hope. Hope can be a liability when dealing with a chronic illness. I got tired of hoping this next drug would work only to be disappointed time and time again. My heart would break each and every time the treatment failed. It became too much.

So I said: Screw hope. I don't need it. I don't have to believe in these pills to make them work. It's not like in Peter Pan where I need happy thoughts to be able to fly. All I need is tenacity. All I need to do is not. give. up.*

And the strangest thing happened... I improved my situation anyway. No hope or happy thoughts required.

There's a story from WWII about the allied forces hearing that the Germans were taking no prisoners; they were just slaughtering everyone. The Germans believed this would have a demoralizing effect: taking all hope away. What soldier would want to fight if it was certain they were going to die? Why fight when there's no hope of a tomorrow?

It had the exact reverse effect. When the allies figured there was no way out, the muscled up. The Germans aren't taking survivors? Well, let's take out as many as we can because that's the best we can do. They fought like tigers.

I say, so what if the situation is hopeless? That just makes me standing up to it that much more awesome. Yeah, this disease is big, scary, and frequently totally overpowering. It sucks. It's unfair. It's only gonna get worse before it kills me. So what? No one gets out of this life alive... but I can face it with dignity until then.

"Our arrows will be so numerous they will block out the sun." - Persian emissary
"So much the better...then we shall fight our battle in the shade." - Dienekes, Spartan 

As recorded by Herodotus, Battle of Thermopylae, aka The Last Stand of the 500

P.S. I learned that you *can* give up, if only for a little while. I gave up for a few months here & there... but I would get tired of that, and eventually get back to researching, networking, reading, etc. And when I got back too it, I found all sorts of wonderful new discoveries in my absence. So don't feel bad if you have to give up for a while. You can't stay at the front all the time.

Reflections on My Trial Work Period

There are three main things I learned with my trial work period: 1) I cannot work 9-5. I cannot be that strict. My body is to fragile and demanding (especially at inconvenient times). 2) The computer industry mostly doesn't care if you can't work 9-5, as long as you can get your work done. My job isn't shift-work. It's project-based work. 9-5 isn't even a realistic business model for my job. 3) I've still got what it takes to do a great job. The love my work. They want me to come back. They're trying to figure out how to bring me back even now, just a few days a week. But I'm torn.

My main concern is that I'm still very fragile. If I work, the rest of the time has to be spent managing symptoms and spoons. Yes, I can do it, but that's all that I'm able to do. I'm 100% work oriented, and that will make you go nuts really, really fast. We have to be able to "take off the uniform" and "leave work at work." But I don't have time for that. I have to sleep enough to have the energy I need to work. That means everything, including taking care of the house, doesn't happen until the weekends. There's not much time left over for rest and relaxation. I'm lucky that my brother is living here and taking care of most of the chores. I'm sure this place would be a wreck otherwise. I'm not sure I can survive full-time work yet.

I could try to work part-time, but then comes the issue of money. Can I afford my medical care, rent, food, medication, and all that, if I'm only working part time? What are my monthly expenditures, and can I afford only part-time work? The last time I did the math, it didn't add up well. Either I work full time and I'm just barely able to make ends meet (not accounting for debt), or I stay on welfare. There's no in-between. I'd lose my benefits and not make enough money to cover the short-fall.

Then there's everyone here, and everyone that I've helped through the years. If I do go back to work, it would mean I wouldn't have time for you or this. And I love doing this. I love shining a light in the darkness and letting people know: "Hey---you're not alone. Hang in there. Make this look awesome!" I don't want to abandon everyone, and I would have to, if I went back to full-time work.

I have much to think about... your thoughts are welcomed.

[THP] 20m Happy Memory - Pain Control

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

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

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

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

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

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

Hallelujah!!

[THP] Building New Habits & Breaking Old Ones

Part of a Facebook Event called The Happiness Project (not to be confused by the book of the same name... no relation)

Going into this event, it may be useful to know some of the concepts for building new habits and breaking old ones. Some of these are ideas from the book, but nothing here is content from the book, unless specifically mentioned. One Path of Least Resistance is (or what Shawn calls, "The 20-Second Rule"). Shawn uses this guideline to help build new habits, and break old ones. Take "20 seconds" (or more... the more the better) away from any task you want encourage yourself to do and add "20 seconds" to any task you want to keep yourself from doing.

Time and time again in psychological studies, it comes up that one of our very base natures is to do what is easy, or to not do at all. This is as deep as biology, because to rest is to conserve energy, even on a molecular level. What it was for our ancestors, the cavemen, was we needed to rest to conserve limited energy for when we needed to do other things, like run from that cave bear. Activity was done largely in bursts. The same is true of other animals. Do you know how much your house cat sleeps?!? 16-20 hours a day. His wild counterparts aren't much different. We are all wired to mostly do nothing.

So the next time you find yourself sitting on the couch doing nothing, instead of out exercising when you know it makes you feel good... Or why you end up sitting home on the couch playing video games, even though it's far more rewarding to go out with friends, understand this---it's not because you're lazy. It's that you're extremely good at conserving energy. Problem is, this becomes an obstacle when trying to form new, healthier habits.

However, this "Path of Least Resistance" attitude can also be used to our advantage. For example, it's far easier in our minds to "Opt-in" (i.e., "option-in," meaning, the choice was made to include you in the option) rather than change our course of action. Organ Donor registries have discovered in recent rears that the mere phrasing of a question can mean the difference between less than 10% of people signing up to more than 90% of people signing up. That is,

"Would you like to be included in the organ donor registry?"
(Check yes to be included.)

versus

"Would you like to not be included in organ donor registry?"
(Check yes to be excluded.)

It's a big decision! So the easier choice is to not check the box at all. The first example got 10% of people to become organ donors. The second received 90% participation in the organ donor program. Just because it's easier to not make the decision. Do I? Don't I? Do I really need my organs when I'm gone? Do I want them to cut em up before they bury me? AHHHH! I don't know, I don't wanna think about this, now, and I've been here long enough! Huge difference in participation rates.

We can think about this when it comes to our daily lives and make new things easier to make a habit, and things we want to quit, more difficult to deal with. Shawn tells the funny story of sleeping in his work-out clothes, because it was more of a pain to change out of them that it was to just go with the flow and put on his running shoes and exercise for the day (exercising in the morning has particular benefits to the mind -- buy the book for details).

On the flip side, if there's a habit that you want to stop, make it more difficult to engage in that habit. Say you want to want to watch less TV. One way to accomplish this would be to remove the batteries from the remote controls and put them in a drawer. Even the small act of adding that much time to watching TV (first I have to find the batteries) can be dissuasive enough, especially if you've left a book you want to finish right by the remotes. That makes the path of least resistance reading a book, rather than watching TV.

---

In moving forward with your Three Good Things, try to make this exercise as easy as possible. If you're on Facebook, this is as easy as joining The Happiness Project Facebook Event (tagged here as "This Happiness Project"), and you'll get a daily reminder to post your Three Good Things (plus Blogging/Journaling reminders on Sun/Tue/Thu). If you're not a daily user of Facebook, or you would rather participate on paper, try leaving a notebook on your pillow so that your remember to write down your Three Good Things before bed. (You can use this trick for your Blogging/Journaling task, too!)

For your Meditation task, find some music you like that lasts for 5 minutes for the breathing exercise, and one that lasts 20 minutes for the positive visualization exercise. (Ah ha! Didn't know you could music, now, didya? Yes, this is perfectly legit, though music without lyrics is probably the least distracting. IMHO. YMMV.)

Right now (in the Facebook Event) we're discussing simple ways for people to do their Five Conscious Acts of Kindness. There are all sorts of great ideas!

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Next up... What's My Mountain?

#NMAM "Dear Genie"

Put together a wishlist for your life. There's one big thing that I've always wanted from my life, and that was a family of my own: a partner with whom I felt a true bond, children of ours to raise, and all the trappings that go with it, plus a small corner of the world to call our own. Right now, that's not possible. My female hormones from my pituitary will randomly quit on me. I've never been pregnant. They don't know if I can be. This breaks my heart. There is hope, after my cure, that it would be possible for me. However, that means starting a family in my 40s, which in itself is high-risk.

I wouldn't mind marrying in to children. I love all kids, whether they're mine or not. When I was a teen, my family called me the Pied Piper, because I used to take care of all my little cousins, from crib age to age 9 (I was 14). My mother, when she couldn't come up with a reason for why she did things, would say, "Well, that's how they taught us in Mommy School." Even as a child, I knew she was shining me on. There was no such thing as Mommy School. But then, as I grew older, I realized... No, there really is such a thing as Mommy School, and it's the wisdom of every mother, every grandmother, every great aunt, every woman who's ever had a child... They all have something to teach.

So I learned. We all would vacation together in a small area of Michigan. And when I say "we all," I'm talking 3 generations of 5 families, wherein each family averaged four kids. Around 100 relatives, some of whom are double-first cousins. I sat myself at their knee and I asked them how they did it. And they told me, and showed me, and I listened. I would take care of my younger cousins, and put my lessons into practice. I vowed that I would raise them to be cooperative and kind towards one another; something that my generation did not experience.

During vacations, I would gather up all my younger cousins and take care of them, collectively---as a group. One summer, I decided to teach them a choreographed dance. This is something that I knew would be difficult for them (ages 5-9). Everything about childhood is about instant gratification. I wanted to show them the secrets of delayed gratification. So I came up with a little dance, set a popular song at the time, and I asked them it they wanted to put on a show for the adults. They, of course, were skeptical.

I bribed them. I told them that we would practice for 15 minutes and then play for 15 minutes. Play and practice would get equal time (unlike in school). They thought I was being generous with all that play time, and it only seemed fair that work and play would equal... They figured they could put up with my teaching them something for 15 minutes. I was known for teaching them cool things, but their patience would naturally wear out. Fifteen minuets wasn't too long of a lesson time. They accepted.

At first, they were all about the play sessions. The dancing was work. It was hard. They would get things wrong and disappoint themselves. Play was all fun. There was no disappointment there. But then, as they started to get better and better at their parts, as they started to achieve, and get applauded by their fellow cousins for that achievement... well, then, the work started to be more fun, and they wouldn't want to stop to play!

But I made them stop anyway. I stuck to the script. some rules are there for a good reason, even if it doesn't make sense at the time. Even it it seems counter intuitive at the time. I told them Even when you're excited and want to press on with your work, take a break and go play to refresh your mind. Then when you return to your work, you'll find that things flow more naturally. They didn't believe me, and at first, it was hard for them to want to play again. But they got back into the grove, and before they knew it, it was dance time again. Sure enough, this time when they did things, it was easier, and they hadn't even been working at it! They looked at me like I'd just done a magic trick. I told them it was they who had done the magic trick---their mind did the work for them, because they had rested and stopped thinking about it.

When they put on the show, their parents couldn't believe it. They couldn't believe themselves and the reaction they got. twenty years later, that generation is still loving, inviting, encouraging, accepting, and fun. They've grown up to be amazing adults, and I'm so proud of every one of them. One of them even told me later of our time together, "You gave me the courage to be who I am."

There is nothing I have wanted more than to have my own family, children born of my own body, nurtured from my own breast; Raised in a family that is nurturing, protective, and spiritual; Part of a community that is connected, supportive, and accepting; A very extraordinary, normal life; Suburban or urban (I lean more towards the urban and the slower pace of life).

I want to be there to watch another set of beings grow into this world. I want to teach them how to manage the hurts and deal with the hardships, and find joy and happiness throughout. I want to show them how to be supportive and loving towards one another, so they can be there for each other once we're gone (my partner and I). I want to see them fly to higher heights than even I dreamed of, soaring to success on their own wings, launched from our shoulders. I want to see them find love, and make families of their own. I want to grow old and wise with my partner, and spoil my grandchildren in that delightfully wicked way that grandparents do.

I want to write a book... or maybe books. Paint paintings, sell my artwork... Make enough money in a career I love to be able to support that dream...



That's what I wish for.

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

Happy Birthday, Make This Look Awesome!

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

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

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

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

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

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

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

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

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

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

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

Thank you for joining me in my incredible year.

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.