Monday, December 31, 2012

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!

Saturday, December 29, 2012

Fighting Bitterness

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

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

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

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

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

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

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

Wednesday, December 12, 2012

A Diamond in the Coal

By Jove, I GOT IT! Lo-and-behold, I now know the drug and the dosage for the cure*. The bitterness of my situation led me through a tear through the Internet. I scoured medical papers. I checked the cross-links and every little trail I could find. I enhanced the specifics of my web search, and I found not one, but TWO papers that corroborate each other and agree on the dosage! Who needs a neuroendocrinologist now? Not this gal!!! Nor do my Unicorn Sisters!

According to the two different papers out there, the dosage is 100mg azathioprine once a day (150mg was not tolerated in any case, leading to some dangerous complications*). Treatment can last up to 6 months, but it can require as little as 4 weeks in some cases. Other medications (prednisone/levothyroxine/etc.) are continued until no longer necessary. (Azathioprine as an alternative treatment in primary hypophysitis and Lymphocytic Hypophysitis: Differential Diagnosis and Effects of High-Dose Pulse Steroids, Followed by Azathioprine, on the Pituitary Mass and Endocrine Abnormalities — Report of a Case and Literature Review) [*"two-fold elevation of alanin and aspartate aminotransferase, five-fold gamma- glutamyl transferase and transient leucopenia 10 days after therapy initiation, that subsided with dose reduction to 100 mg qd."]

Now to convince one of my local doctors to allow me to try this, since I'm bringing the information to them, and it's not on the suggestion of a doctor, that may increase their liability by... a lot. I honestly don't know. It may not be a big deal at all. We'll see.

But for me and my Unicorn Sisters, this day couldn't have ended better.

*Note: I say cure, but there's no guarantee. There never is in medicine. However, the statistics look *good*... 86% show improvement, and more than 40% go into complete remission.

This article is in response to Stocking Full of Coal

[Update 12/14/12]
I called my old Neuroendocrinologists office (as she has already left practice) and was able to talk to the prescribing nurse (who is filling prescriptions until the end of the year). I told her about my situation, was able to giver her the names of the two papers, the dosage, and put in a request for a recommendation letter to be sent to my GP about how to carry out treatment. I was told to expect a call soon!

So it may be that I was able to get this all in right under the deadline. Whew! I do not like close calls like that!! But I do feel better knowing that this can proceed forward again...

Stocking Full of Coal

Many of you know, I suffer from a rare pituitary disease, for which there are less than 500 people with the disease. This is why I call myself a Medical Unicorn. When I got the diagnosis, I figured that my disease was so rare, there was no possibility that there would be a cure. There just aren't enough of us for it to make a difference to even try to find a cure. There's certainly no money in it. But then, it happened! They stumbled upon a cure, in the process of trying to fix something else in a patient. I've been trying for the last year and a half to get that cure.

My chase for the cure started with me moving to the Denver area. Doctors who study the pituitary gland are called neuroendocrinologists, and there aren't many of them in the country. There was one when I lived in Seattle, and they were the ones who originally confirmed my diagnosis. But Seattle is way too expensive a town to live in, and after my ex-husband suddenly cut off my court-ordered spousal support, I had to move back home to St. Louis. However, I quickly discovered there wasn't a neuroendocrinologist for a 5-state area. I was shocked. I was sure there would be one at Washington University, but no. So after exhausting everything I could do in St. Louis, and with the help of mt father, I moved.

It was a struggle getting an appointment with the neuroendocrinologist in Denver. At first they told me they wouldn't let me in because the University Hospital, with which she was affiliated, wasn't taking any more Medicare patients. I had my old neuroendocrinologist in Seattle fax over my MRI that showed the inflammation of my pituitary gland. That got me in.

But then, the neuroendocrinologist here took one look at me and decided that all my doctors of the past 10 years were quacks, that they had misdiagnosed me, and that all I needed to do was to come off my medication and I would be fine. She said that my thyroid problem was caused by another autoimmune disease, and it would show up on her tests. Well, it didn't. All my test came back proving her wrong. But did she change her stance? No. She still insisted I could come off all my meds and would be fine. She never said what was causing my thyroid to not work, since I came back negative on all other autoimmune disorders.

I tried switching to another neuroendocrinologist, a resident in training. However, since their scores are dependent on the exact person who dismissed me... Yeah, I didn't get any further except to keep having them spin their lies at me. At one point, I got the resident to break down and admit that they weren't going to do anything for me. I was devastated. I had the disease, I had the cure, but I couldn't get access to it.

Then, a miracle occurred. I couldn't have wished for better. My endocrinologist, the woman who had diagnosed me, and had send me to the neuroendocrinologists, was herself promoted to that very same position!! Gods be praised, I was overjoyed. I wouldn't have to prove anything to her, she was there! She was there when my disease went into remission, and I was able to come off all my meds, and she was there when it came back. It was a homecoming.

I couldn't afford the trip on my own. So I held a fundraiser, and my friends and family came out in support. I was able to make the trip to Seattle and reconnect with my old doctor. She hadn't heard of the cure, but she was able to look up who was involved in the study, to try and get the correct dosage and protocol I would need to go through to cure me. We waited for an answer.

And waited.

And waited.

I called her office today to see if we'd had any luck. Only when I get the pre-recorded greeting, it tells me that my doctor is no longer in practice!! I got no letter, no warning. Nothing. Like a stocking full of coal on Christmas morning, I'm beyond grief. I have no idea where to turn now. I can't afford another trip to Seattle. Her replacement will be a stranger who also may not believe me. Doctors don't believe in medical unicorns.

There's a cure, and I* can't get it.

She left her practice, and didn't tell me.

Who do I turn to now? Where do I go? What do I do?

How do I get what I need?


[Edited to add:]
* I should actually say WE can't get to the cure. I know of two others (Hi Jana & Cathrine!) who share my disease and who's doctors are looking to me and my results before trying it on their patients. I'm leading a charge here, and I feel like the wind has been knocked out of our sails.

Please, if you have any insights... share them. Pass the word along. THIS CANNOT END HERE!!

[Edited to update:]
Never mind!! I found A Diamond in the Coal!!!

Tuesday, December 11, 2012

Pitting the Healthy Against the Sick

I had a troll recently go off on me. I have to say, it bothered me at first. But, bless the strangers on the internet, they defended my position, and even went so far as to deconstruct his argument showing that he was guilty of the sin he was trying to cast upon me. The only thing he proved was how much of an @$$hole he was. But he raised a very interesting point... He believed he had the right to tell other people how to live because it cost him more money on his health insurance. And that, right there, is the reason why "give my people health insurance" is a bad idea. The healthy people have to pay for the sick people. And the healthy people resent it.

This is especially true in this country, where the media claims that any health problem can be solved through "healthy living" (and buying the product they're selling). The medical profession has done a great job of smoke and mirrors, hiding how much we don't know about health. But this leaves people who haven't been through the system with the belief that the system always works for everyone, and if you didn't get better, it's your fault.

And there are some amazing myths that persist in the healthy world, about the would of the sick. They believe that doctors run excessive amounts of tests to cover their @$$ in case of liability. But how can we judge what's excessive and what's not? Right now, there's a huge debate raging on mammograms, whether or not we're putting women through cancer treatment who don't really need it, just because of something seen on the scan. But do we know that's actually what's happening? What if we're catching cancer really early and saving these women's lives? What if we're treating women for cancer, ruining their lives with chemo and other processes, who would have been fine if they were left alone? Are we doing more harm than good?

See... we don't have all the answers. Sometimes, we don't even know the right question to ask. Health care is messy. There is no neat formula to follow that will guarantee a healthy life. We're learning new things about diseases every day... things we didn't think were possible. Mother Nature is a wily character, with lots of tricks up her sleeve. There are more things in heaven and earth than we could possibly imagine. So we don't always get this health stuff right.

Then there's human error...

All told, as many as 98,000 deaths occur each year due to all kinds of medical mistakes--the equivalent of a fully packed 747 crashing every other day. According to a congressionally mandated study on Medicare recipients, during 2008, 1 in 7 hospital patients experienced at least one unintended harm that prolonged his or her stay, caused permanent injury, required life-sustaining treatment, or resulted in death.
(14 worst hospital mistakes to avoid - NBC News)

And what about when the treatment is worse than the disease? CT scans are useful in the early detection of lung cancer, but the CT scan itself causes cancer.

The risk of developing cancer from the CT scan itself isn't trivial. A recent analysis published in the Archives of Internal Medicine found that a single chest CT scan exposed patients to the radiation equivalent of more than 100 chest X-rays, and that at age 60, an estimated 1 in 1000 women or 1 in 2000 men would eventually develop cancer from that single scan. (Participants in the lung cancer screening study actually underwent three consecutive annual CT scans.)
(4 reasons to not be screened for lung cancer - Common Sense Family Doctor)

And ultimately, the problem is that "Much of medicine exists in a grey zone where there is no one right answer about when to treat and how to treat. That is why you need to figure out what applies to you and what doesn't and how you weigh risk and benefit." (How to Talk to Doctors - Freakonomics) But that doesn't work well if someone else is footing the bill. It especially doesn't work well when cost-creating behavior is "rewarded" with health care, and healthy people are "punished" for their good behavior (losing money on health insurance and gaining nothing in return).

This results in a dangerous situation. Healthy people believe they're in the right, and that sick people are in the wrong. They believe that since it's their money, they then have the right to tell me how to live. And why not? My behavior costs them money. Suddenly there is a huge incentive for them to be all up in my business---how I eat, how I sleep, the risks I take (riding a motorcycle), and all the other choices I make in my life that could affect my health. That's now their business, because it's their dollar on the line.

And you'll have to pardon my tin-foil hat, but I also don't like the idea of the government being all up in my health care either. It means the government will track me from cradle to grave. Unlike most people who just need a yearly physical, I require at least one doctor visit per month. Why? Government regulations that are already in place require it. Why? Because of the War on Drugs (and what a huge waste of taxpayer money that is). And do you really think the government cares how much money it's going to cost you? It doesn't hurt the politicians when your health care insurance costs rise. And what's going to happen when people complain? The government will step in and create laws trying to force people to be healthy. They will restrict freedoms all in the name of controlling health costs. It's already happened in NYC. (NYC Super-Sized Soda Ban: Now in Effect - US News)

1% of the people account for 30% of all health costs. "One patient alone racked up $3.5 million in medical bills over a five year period." (Zakaria: 5% of U.S. patients account for 50% of health care costs - CNN) And what's the easiest way to cut those costs? Let 'em die. Kill off 5% of the population and our health costs drop by half? Do you really think with numbers like that, that there's an incentive to treat these people and keep them alive? Don't kid yourself. Health-cost-related deaths are already a reality in the U.K. (Top doctor's chilling claim: The NHS kills off 130,000 elderly patients every year - Daily Mail)

You'd think with my health care problems and costs that I would love free government health care. Sure, it helps me. In a big way. But at what costs? If it's at the cost of my freedom and privacy, and possibly my life, I'd rather not. But that's where we're headed anyway... And it terrifies me.

Sunday, December 2, 2012

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?
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:]

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.


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.

Tuesday, November 27, 2012

Stop Negative Thoughts

Before I started therapy, my mother used to live in my head. She'd watch everything I did, and provided a constant stream of negative feedback. If I did something wrong, she'd yell at me and let me know how stupid I was for not seeing these consequences ahead of time. If something was wrong, she'd explain to me how it was all my fault, and that this was evidence of how rotten I was. If it wasn't my mother, it was my grandmother ("You dummy!") or my father ("Goddamnit, get your $#!+ together!"). They would scream at me, in my head, all day long, and then made sure to take a thorough inventory of everything I'd screwed up, and tell me all about it as I was trying to fall asleep. It was a brutal mental onslaught. And no matter how much I screamed back at them (in my head), I couldn't get them to shut up.

Finally, I asked my counselor: "How do I get that voice in my head to shut the f**k up?" (I had an awesome relationship with my counselor.)

"I'm so glad you asked," she said smiling. "Most people don't have the courage to admit they have that voice---or voices---in their head. They think it makes them crazy. But that's perfectly normal. Would you like to do some EMDR* on it?"

"Yeah! That's be great."

EMDR, for Eye-Movement Desensitization Reprocessing, is a type of therapy that allows the patient to detach from emotionally-charged memories, and look at them from a less personal point of view. And my counselor had special training for trauma recovery designed in Seattle. And she knew what was coming, because it was something true of all people...

What I discovered was, it wasn't my mother, or my grandmother, or my father yelling at me. It was ME. It was my inner child, scared and insecure, who had put on Masks of Authority to appear like my mother, etc., so that I would pay attention and be careful. It was actually a perverse form of self-love, where I was trying to protect myself, by getting mad at myself. When I was screaming back at myself, all I was doing was yelling at my most vulnerable self.

So, instead of fighting fire with fire, my counselor gave me a new thing to say:

Hi, I understand that you are trying to protect me, but this is not helpful right now. If you could leave me alone for a little, I'd be able to concentrate on this more, and be more careful. So, could you please be quiet for a little while? I appreciate your trying to help, but I'm okay right now. Thank you.

Later that night as I was setting about some chore, the Voice started up with it's barrage of negative commentary. I stopped and recited what my counselor told me. And, like magic, the voice went away! A sense of lightness came over me, and I was able to complete my chore in peace. I even did a really good and thorough job. So I stopped again and told my inner child:

See? Everything worked out! You don't have to yell and scream at me for things to work out. It's okay. I've got this managed.

Since then, that voice is mostly gone. Oh, sure, it pops up every now and again, but I just remind it of what I told it the first time, and it goes away again. I am, for the most part, left at peace. And it's a beautiful thing.

Try it! Share your result here!

Saturday, November 24, 2012

Thankful Thanksgiving

This year has seen so many wonderful things for me, I can't even begin to describe. I've been able to do physical therapy, and all my doctors have been able to see great progress. My disease has a cure, even if we haven't been able to get access to it yet. I've been well enough to help take care of my step-brother, himself, a disabled Vet. I was well enough to cook our entire Thanksgiving feast, something I haven't been able to do in years, and though I was exhausted afterwards, I felt whole, having been able to complete my part in our annual traditions.

That's one thing that is really lost when one becomes disabled---our ability to participate in events that help us feel the flow of the year. When the flow of our lives is interrupted by a disease, what used to be the change in seasons is now a change in doctors and medication. What used to be the delicate passage of time has become the ticking off of days in a prison, never knowing when, or if you'll ever be set free. When life becomes about symptoms and self-care, spending energy on holidays can be impossible. It's easy to become detached, and feel outcast. Because we can't participate, we lose touch with the sense of joy we used to get.

It can be even worse for caretakers. They can feel caught in the middle, wanting to have fun, but feeling guilty for being well, and being able to enjoy these times, while their sick loved one cannot. They may lose their own sense of joy in the holidays because diseases don't take a vacation, so neither can they. They may try to go out and have fun, only to worry the entire time that they're away, so that going out and trying to take a break can be even more stressful than staying at home (at least you know nothing's going wrong, then).

And I was going to write some Pollyanna-ish things about, "If you can't do what you love, do what you can instead!" But honestly, that can make me more depressed than just trying to pass on the holidays altogether. Doing holidays half-assed, that is, not being able to do the things I used to do, but doing something close to it, to try and recapture that old feeling, just ended up being a reminder of why things sucked now. It was honestly much easier to just let go of the holidays altogether. That was something that happened on planet wellness. I didn't live on that planet anymore.

Here on this new planet, we didn't have winter holidays. It just got cold, you got a break from appointments, and you had to be really careful about stocking up on medication because the pharmacies closed on weird days. Presents aren't given, because no one has any money for anything extra anyway. Time is spent, instead, on studying the new changes to Medicare, which require a degree in government-speak before you can understand them.

Winter was the time when other people spent as much time indoors as me.

Now that I'm starting to make visits back to planet wellness, I can say that it's really good to be home again. I'm not going to be "here" for Christmas yet, but my doctors and I are working on it. And yes, I'd rather it be an either/or thing. I don't want it to be the "this is what I can manage" holidays. I either want the holidays the way I want them, or I want to skip them entirely. If I try the middle road, it hurts my heart more. I "miss out" more if I try to do the holidays in a way that's new, because I can't manage tradition health-wise. I miss the holidays less if I don't participate at all.

Of course I want to enjoy the holidays. But if I can't, then I'd rather do without than be teased by visions of what I used to be able to enjoy. So my real suggestion? If you have to have holidays, find a culture that's completely different and start following their holiday traditions. (There are a lot of traditions from Asia that celebrate the seasons in very beautiful ways.) If you are religious, and following the Holy Days is important to you, contact your local church. There are usually volunteers who will bring the ceremonies to you, as an act of service, if it's too difficult for you to make it out.

Now, for caregivers, if you still want to go out and enjoy the holidays, without the baggage of guilt for leaving your sick loved-one behind, my suggestion is: take a "Guest Book" with you when you go out. When you talk to folks, ask them to take a moment to write some well-wishes to the person you had to leave at home. When the party is over, you can bring the Guest Book home for them to read, to let them know that people were thinking of them, and that they were missed. Bringing home a doggy bag with samples of all the goodies from the party is also a good way to help the sick person feel included. As they read, they can sample the treats, enjoying the quiet after-party with just the two of you.

By asking other folks to send their well-wishes, you also strengthen the sick person's ties to the community when they can't go out themselves. You're doing them a service by making sure they're not forgotten at the celebration. This means a lot to us. We feel included, even though we're not able to be there ourselves. It's easy to feel left behind, even if the cause of our not going is no fault of our own, it can feel like exclusion. It can feel like people don't want us around, even if that's far from the truth. A Guest Book is solid evidence against these fears. It shows us that our presence was desired. It shows us our value to the group, and also reminds the group that we still want to be around, even when we can't. (That helps keep future invitations coming.)

I am thankful that I was able to enjoy "Turkey Day" in the way I like. I had missed it. But I'm also thankful of the path I chose when I couldn't enjoy the day like I wanted. It helped me survive the heartache.

I hope you are staying strong through this time, whatever path you choose for yourself.

Tuesday, November 6, 2012

Guide for Talking to the Chronically Ill -- Call for Submissions

How many times have you heard from your healthy friends and family that they want to show support for you, but "I just don't know what to say..."? Have you ever wished for a guidebook that you could hand to healthy people, so that they would know what to say? Well, I am working on exactly that.* And I would like your help.

I want to teach healthy people how to communicate with people with chronic illness. I want to teach them how to be brave, how to be supportive, and what we want to hear. If there is someone in your life who is having trouble knowing what to say, I'd like you to write me and tell me what you what to hear from them. The more stories submitted, the more options we can present them.

What would you most like to hear from your family?
What would you most like to hear from your friends?
What are some of the best supportive comments you have heard?
What are the worst things you've heard?
If someone wanted to approach you to discuss your condition, how would you like them to ask?
What do you wish people understood about chronic illness in general?
What do you wish people understood about your chronic illness, specifically?
What do you struggle with most, as a result of your chronic illness?
Do you want people around you to help? If so, how do you want other people to offer assistance?
Other thoughts? Comments?

Please say whether you would like credit, or whether you would rather remain anonymous. Feel free to submit previously written works, blog post URLs, etc. (along with permission to reprint).

Send your submissions to: pamc.writer(at)
Include your NAME (or Anonymous), CITY, STATE/COUNTRY
Your DIAGNOSIS(es), HOW LONG (you've been diagnosed), whether you're DISABLED (and DATE)
(Include links to your blog, Twitter handle, etc., if you wish)

Submission Deadline -- December 15th

*I've been gone from here working on this, and other fun surprises coming later this month!

Thursday, October 11, 2012

What Do I Stand For?

I was sitting with my (former) roommate Mike last night, having drinks, and lamenting my current existential crisis. I knew that I had to figure out my direction in life, what it's all for, before I dove back into work again... because once work hits, I won't have time or energy to even ask these questions to myself. It will be work and managing my health to work, and what's this all for again?! I needed to figure out now, during this break in my contract, what I stand for and what I want out of life. I needed some guiding star, otherwise, what's the point? So Mike told me the story of two women stuck by tragedy...

Both had lost their children to violence: one to a gang shooting, and the other to a hate crime. Both women were obviously devastated by their loss. Neither he nor I could imagine the pain that either of these women suffered. And one woman, justifiably so, was left broken and shattered by the experience. She hasn't recovered yet, and no one blames her, because of her experience. But the other woman used her grief to fuel a not profit organization that turned into the NOH8 (No Hate) campaign. She took her pain and turned it into something amazing for others.

It's not difficult for me to answer the question in that song: "What do I stand for?" That's easy. I stand for the rights of the disenfranchised---those struck by chronic invisible illness, who are disabled by their disease, who can't advocate for themselves because they are too busy trying to manage their own illness, and the havoc it brings. I want to shine a light in the darkness to say, "Hang in there... You don't have to walk this alone. I know what you're going through, I've been there myself. Whatever you're going through---no matter how helpless and hopeless you feel---you still have value to me. You're amazing for what you're trying to survive. Give yourself props!"

What I don't know how to do is work towards that goal and work at the same time. I know what I need to do to get my message out there, but that takes a lot of work... work that doesn't pay. So I need to find a way that I can work for what I stand for, and still keep a roof over my head and medication in my system. THAT is what is totally daunting to me. Trying to figure out how to survive in the meantime... oh, that's big.

But I do have something to stand for, and it's about time I got back to it. I'm not like other people, walking around, wondering what their life is about. I know very much what my life is about. I know very much my purpose. Most people aren't that lucky. I found out that my best friend from college died day before yesterday, and it shook me. He was only a few years older than me. We never know how much time we have on this planet. Time for me to stand up.

Tuesday, October 2, 2012

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.

Sunday, September 23, 2012

WEGO Health Activist Award - Call for Nominations

WEGO is excited to announce the start of the WEGO Health Activist Awards Nominations.

This year, they're extending the nomination period and they've added some exciting new award categories. Now's your chance to recognize someone who has inspired you, helped you, or even changed your life this year - nominate them for a WEGO Health Activist Award!

Click to Nominate a Health Activist

Questions? Get all the details on their WEGO Health Activist Awards FAQ page.

If you want to keep up to date on all the latest WEGO Health Activist Awards news and information, be sure to follow WEGO Health on Twitter and Like them on Facebook!

Sunday, September 16, 2012

Invisible Illness Week - Post # 300!

It's the close of Invisible Illness Week, and this here is my 300th blog post! Can you believe it? Yeah, I was pretty impressed when I noticed it. That's an awful lot of writing on dealing with invisible illness. But if you have an invisible illness, you know that I could easily write another 400 blog posts on what it's like. Because, when you get an invisible illness, it transports you to a different planet, with new rules and new realities, that other people just don't get. I didn't get it today for my brother.

My brother has vaccine illness from the anthrax shot, and on his planet, a storm was brewing. I, of course, couldn't see it. I don't live on that planet. Some of the things about our two planets are similar---I know that when I feel bad, he feels worse and will need more rest. He gets the same weather triggers I do, and we're often knocked out at the same time. But this evening, all was fine in my world, when everything was not right in his. I was able to get him some emergency supplies (chocolate), but he still got hit with an attack that left him shaking and vomiting.

I made him promise to never cut it that close again, because I hated seeing him like that. But in his defense, he said, "I've never had anyone respect my illness before." And that just broke my heart. I know what it's like to not be believed, not be respected, and being told that you're making it all up for attention. It's soul-crushing... because first you've got to convince folks, no, you really don't feel well, and that's all while you really don't feel well, so you're not your best at explaining things anyway! It's a moral kick in the gut when you're already feeling vulnerable and at the mercy of others.

Then, if it's doctors that don't believe you... well, they're the gatekeepers to most all things health! If it's not a skinned knee, a mild headache, or a cold/flu, you're screwed when it comes to fixing your problems yourself at home. And when it comes to getting a correct diagnosis... it can take 7-10 years to get a correct diagnosis when your doctors believe you. It can take agonizingly longer than that if they're antagonistic towards you. No one likes an angry nurse. An angry doctor can poison an entire institution against you.

And, of course, having someone on your side who believes you, and has seen your trouble first hand, can make all the difference in the world. Despite what the OSD says about the Anthrax Vaccine, "U.S. District Judge Emmet G. Sullivan ruled December 22, 2003 that the Department of Defense must stop forcing soldiers and civilian employees to get the anthrax vaccine, saying the vaccine is an experimental drug not licensed by the FDA." But the DOD back-ended their way around that by having the FDA call it safe after the fact, even though Attorney Mark Zaid cited research from an FDA panel in 1985 -- which was also mentioned in the FDA statement Tuesday -- that said that "no meaningful assessment of [the vaccine's] value against inhalation anthrax is possible," Zaid said. Based on the research I was directed to by the CDC, there have only been two human studies, and one of them showed severe side effects compared to controls. Um.... There have been drugs, good drugs (Demerol, for example), pulled off the market for far less! And yet there's this whole web site by the Offices of Strategic Defense that are telling me, oh, no... it's just fine! No one gets sick from this! Really?? I found "one study shows that the incidence and severity of side-effects are significantly higher with the killed vaccine than with the alum-based placebo (overall odds ratio 0.16; 95% confidence interval 2.38-27.17)." [Source:] Just fine, eh? Would you like to sell me a bridge too?

My brother deserves a chance to be well. I'm gonna work my pants off to make that happen.

Monday, August 27, 2012

Nervous working...

I'm nervous my co-workers think I'm lazy...I know my co-workers probably think that I'm lazy. I don't roll into work until 9:30 sometimes. I take flex days where I work 4-day weeks or half-days sometimes. But what they don't know is my mornings are explosive sometimes. I may roll in at 9:30, but I've been up since 6am. I've just been trying to get myself right so I can handle my workday.

I have to take pills to keep me alive. These must be taken in the morning. I wake with nausea, every day (part of the nerve damage). I still have to keep the pills down. So first, the nausea must be managed, and there's no telling how long that's going to take. It could be fifteen minutes... It could be an hour. Or two. I've learned to wake up early and give myself a lot of wiggle room. Right now, I'm taking time out---every few minutes writing a few words---as I try to manage this migraine that decided to upset plans this morning. Oh yes, beyond the usual monkey wrench, there's also the occasional uber-monkey-wrench. There is no negotiating with a disease.

So I have to start waking up earlier and going to bed earlier. I've made a new resolution to go to bed at 8:30pm and asleep by nine, so that I can wake up comfortably after a solid night's sleep at 5:00 in the morning. That should give me enough time to wrestle with my illness and still make it into work at a decent hour.

Today, however, is not that day! lol (*ow* migraine!)

I'm just glad that my work is solid enough that they're willing to be flexible with me. I am very fortunate, and very grateful. It was this flexibility that allowed me to work, even while technically disabled, before the Great Migraine incapacitated me. It's what's going to allow me to work now, even though I'm still technically disabled (I can't meet a 9-5/M-F schedule, there's no training or work aids that would allow me to do so, either). But I know that from the outside, this all looks like I'm just able to come and go as I please, and work easy. No one can see that I'm coming and going as my disease dictates, and that I have a second full-time job managing this beast.

As a result, I must be very careful never to take advantage of this situation for personal want. Their generosity and trust, beyond what they pay me for my work, is making this all possible. It's not right to abuse that. So I do my best to act in a state of gratitude at work. I remind myself several times a day: "We're all so lucky to be here..." This helps me stay upbeat (but not overly chipper) even on tough assignments. It allows me the emotional fortitude I need to look at a problem and go, "We'll figure it out, don't worry," rather than any number of negative responses. And I hope that makes up the difference that I can't keep a good schedule.

But of course, I still worry that they're not going to be happy about my irregular hours. What I should probably do is relax, because nervousness is not going to help the situation. Here's the self-talk I'm going to try to practice to see if I can't settle into the grove of things...
They like you. They told you as much. You're doing good work. It was a two month contract, and they're keeping you on indefinitely. It's more than you wanted. Don't let that frighten you. It means you can relax, that what you've been doing so far, they wholeheartedly approve. Breathe. You've done great, kid! You know what they expect, and you know you can deliver. Don't worry about when---they don't! Just do it well like you have been. Go get 'em, tiger!

Ah, yes... that feels better. What self-talk do you use?

Saturday, August 25, 2012

All work and no play *will* make you crazy...

When I heard people who were healthy enough to work, but not healthy enough to to anything else then complain that they couldn't do anything else, I thought they were being ungrateful. I thought that I would give anything to be even that healthy, and if I got there, I certainly wouldn't be complaining! But I get it now... it's not that these people are ungrateful. They're expressing a very real, very dangerous situation, where the mind is not given the time it needs to disengage and rest.

If our minds don't have enough downtime during the week... If it's just: work-sleep-work-sleep-work-sleep-(etc)-weekend, then, as a result, our minds see nothing but work for five days straight. There's no unwind time, there's no reducing stress, there's no "walking away" from it for five days. And a two-day weekend is not enough time to unwind from five straight days of work. This is no way for any human to live. This shouldn't be true of people with invisible illnesses, this shouldn't be true for the platinum miners in Africa. It's not healthy.

There are studies out there ranging from farm, factory and mine workers, where the work day is so long that all they do is work. And the results of running a schedule like this are always shown to be brutal. Just because we can, doesn't mean we should. The mind need rest and relaxation interspersed between work, or our ability to function suffers. For example, from All Work and no Play can be Deadly (Jul. 11, 2002), Sandy Smith says, "Feel like you're being worked to death? You might not be far from the truth, according to a new study, which found that long work hours and little sleep or relaxation time is a recipe for disaster."

So, blessings upon blessings, my employer is willing to work with me and let me go to a part-time schedule. I need to get more reliable technology, so I can be in full contact with them should they need me, but I will be able to do things like work from home and cut back my hours to less than 40/wk. That will allow me to have the down-time I need to be fully-functional at work. I won't have to worry about the quality of my work suffering as a result!

And my apologies to those whom I didn't believe before now. I get it now, and you're right: it's not healthy to try to just work and sleep during the work week. That's unacceptable. You absolutely need more than that.

Monday, August 13, 2012

I just watched "The Secret"

Do not believe anyone who tried to sell you on the idea that your thoughts create your reality. There is reality, and then there's our perception of reality, and the two are never the same.* Our thoughts can change how we see reality, but it doesn't change reality. The so-called "Law of Attraction" is a myth. Wanna know how we're not shaping reality? Stand on the shore and try to hold back the tide.

Moreover, you can always decide to turn your attitude around. Again, that can change our perception of reality, where we're more apt to notice good things, and shrug off or ignore the bad. But that doesn't keep the bad from happening! People still get sick (which is the majority of people, not the minority), accidents still happen (just ask the E.R.), and we still get things wrong. Wanting it really bad doesn't make it a reality. Just ask anyone who's won the Silver.

We're not powerless. We do have some control over what we notice. We can focus our thoughts to see the big picture, and not let the little things bother us. There are ways to bolster our emotional resilience, and learn how to bounce back from things faster. But "things" still happen. There are still mean and bad people in the world, willing to do others harm. We can't buy the snake oil that says the bad things happened to me because I was thinking bad thoughts. That's BULL$H!+, plain and simple. And it's guilt you neither deserve nor need!!! Go ahead and think what you like. It's not some boogeyman that's going to come up and bite you. You may have a "sixth sense" of things and have the thought before the event happens, but that's just noticing that this time, your thoughts lined up with how events turned out. Statistically, that's going to happen from time to time. It's completely normal. (Or you may actually be spooky. YMMV.)

If I'm having a bad day, a lot of times I can turn that around. Here are the steps.
  1. Take a deep breath

  2. Decide to start the day over. Everything bad that happened to you is now "yesterday."

  3. Imagine the feeling of having started your day, and it was wonderful.

  4. Moving forward from that imaginary place of having a good day.

  5. Allow the day to unfold in a more positive way, because of your new happy attitude. ("Problem? That's no problem... This is all manageable.")

It's not magic. It's psychology! It's what Twelve Step programs call an attitude of gratitude, and point you to page 417 (what used to be page 449), of the Big Book of Alcoholics Anonymous. But the story behind that was towards the end of his life, when his health was failing and chronic pain creeped in, Dr. Paul O had difficulty maintaining his attitude, and ended up bitter again. But I can't blame him! Unmanaged chronic pain is a devil, and losing your health is something to be mourned! We folk with chronic illness just have more time to get used to it. We learn early that loss of health is the natural state of things, and we learn to make peace with it.

But "The Secret"? Malarkey. Don't believe the hype, and don't punish yourself for things you're not doing. You're not manifesting badness into your life. That's just life. Bad things happen. Good things happen. Some things, that we at first think is bad, we can then become very grateful for, once new evidence emerges. "For there is nothing either good or bad, but thinking makes it so." -- Shakespeare (Hamlet) Free yourself from this idea that you make bad things happen to you. Forgive yourself. Take responsibility for your actions, and let the rest go. You didn't think this to happen to yourself. No one does.


* We actually cannot perceive reality as it is. For one, we don't have the proper nerve receptors in our eyes to be able to see the wavelength of light, called Ultra Violet. Bugs and birds can see that wavelength. We can't. We're all color-blind, in a sense. Our view of reality is very limited. It's enough for us to do wonderful things, but the fact remains: it's still limited. Reality, and our perception of reality, are two very different things; our perception of reality always falls short.

p.s. We do understand how electricity works. It's how we're able to build computers.

Sunday, August 12, 2012

[THP] I can't do this...

I give up. This program, like so many other programs, is not for me. It falls short. Most of these programs fall short, and they do so for one big reason: they're written for audiences with first-world problems. On page 126, it says, "Just knowing this quirk of human nature---that our fear of the consequences is always worse than the consequences themselves---can help us move toward a more optimistic..." I had underlined that part, thinking that would be my salvation. I just had to have a more optimistic view of the future! I was over-estimating the consequences! Or so I believed until I started vomiting, just because it was o-dark-thirty. Then it all fell apart.

Well, to be honest, it had fallen apart a few days earlier when I got screwed over by my cell phone company: Here's a replacement phone for your old phone! You've been paying for insurance this whole time, so we've streamlined the process to screw you over. We've made more models so that the basic features of our phone now cost $100 more and require you to extend your contract for 2 years... We're sorry if you don't like that. But if you sign up now.... Yeah, I had a full-on, primal-scream nervous breakdown at 75mph on the highway. That's when things first started falling apart. All the work on happiness from the previous month seemed more than null and void... it seemed like a liability when someone tried to take advantage of me because of it... And then there's the jealousy. Some people just hate happy people. So they'll target anyone whose happy and try to steal their sunshine.

But what sealed it was not two days after this going on, my body decided to start vomiting at some god-awful time in the middle of the night. There's nothing else quite like the feeling of springing from a dead sleep, rapidly navigating to the toilet, and having your body void all its contents. I broke down again, but this time I was so pre-occupied with symptoms, I wasn't even able to cry. My fear of consequences didn't even take into consideration something like this could happen. My fear of the consequences underestimated the consequences themselves. I was minding my own business, fast asleep, when all of the sudden I had a mad dash for the smallest room in the house!

That's why I'm working so hard on this happiness stuff. I want to feel better! The truth is, however, it's not realistic to be happy during those times. There's good news in that. It means that my moments of unhappiness are generated by my body, and not by anything I'm doing or not doing. My unhappiness is not my fault. My feelings of being a small, miserable wretch are an accurate assessment of the situation. In the book there are a series of questions to go through, and it finally comes to: "if the adversity truly is bad, is it as bad as we first thought?" The book never takes into consideration that the answer might be, "yes," or "it was worse..." It only assumes that you must be overestimating your problems.

Because thousands of years of evolution have made us so remarkably good at adapting to even the most extreme life circumstances, adversity never hits us quite as hard---or for quite as long---as we might think.


My trauma results from the fact that I had no idea it could be that bad, or last this long. My fear is looking down my life path and knowing that I'm already delicate and fragile from these last ten years. I know how dangerous it is for me just to interact with other people (there's always that person who's being macho and spreading the flu to everyone...and a flu can land me in the hospital, easy). When I start vomiting, that's cause for panic. Because if I can't keep my pills down, I could---quite reasonably---slip into a coma and die. It's why I carry an emergency shot with me. My pills grant me life. If I can't take them, I am doomed. Not exaggerating---my life is literally on the line.

There is plenty of research out there that shows that our optimism can actually land us into hot water, especially when dealing with crisis situations! When something goes catastrophically wrong, afterwards people always say, "We never expected it to happen like that..." Of course we didn't! That's how it was able to go catastrophically wrong. If we knew it would go down like that, we would have prepared for the event, and mitigated the consequences. It would have been handled.

I can come up with three good things daily, I can meditate and do my exercise, I can perform my five conscious acts of kindness, but none of that helps when I'm in the throws of my symptoms. It all boils down to whether the symptoms are managed or not. It's really difficult for me to practice any principles, when I'm in the middle of managing a symptom flare, like vomiting. At that point, it's difficult to think past two words, let alone practice any principles. "Toilet!!!" "Oh, God..." "Nonononono!" "It hurts, it hurts" "Ah, cool, cool tile..." is about complicated as my thought pattern gets. This is where these feel-better programs always fall apart. They don't expect you to be going through this type of trauma on a regular basis.

I have a difficult time reaching "normal" let alone "happy." What I'd like to know is whether I'd be better off trying to squeeze the happiness out of every moment, because I know the misery is going to follow, or if I should play it cool and nonchalant, because I know the misery is going to follow. I can almost hear the author of the book saying, "Well, you know that the good times are going to follow, too. Why don't you just concentrate on that?" Because the good times aren't likely to kill me. I pay attention to the bad times, because the bad times require my attention. They also scare the crap out of me, and I'd like to avoid them, if possible.

Ultimately, thought, I don't like putting all this effort into these happiness programs, when all it takes is one bad night wipe out a month's worth of work. All it takes is one bad episode (well, two, to be fair) with customer service, and I'm having a nervous breakdown. And I'm having that nervous breakdown, after I've already put in a month of work! Where's all that emotional resilience I was supposed to be building? (At the bottom of the toilet, with my dinner.)

So while this program might work well for someone else, it does not work for me. A pity.

Wednesday, July 18, 2012

[THP] 20m Happy Memory - Hopi Reservation

My uncle and I piled into the car together, with all our camping gear, clothing, and all the food we could back (both of us very frugal). We set off early in the morning, but already the sun was bright in the clear blue sky that stretched across the front range. Traffic was light, but mountain activities had already started by the time we met the foothills, with BMX Bike rallies in full swing. We passed by the rich houses of the rocket and satellite scientists that worked near by. My uncle told of where various mountain roads lead (his family has been in Colorado since the Pioneer days). We smoked cigarettes and talked of old travels, talked about where we where heading, and what we were seeing that very moment.

He was a delight to travel with, and we were even invited to stay at one of the local's house (a privileged not often extended to outsiders, but we were extended family and my uncle George is a delight to talk to for people who are talkers). My pain forced my to move outside in the middle of the night, as the sand was softer to sleep on than the floor (everyone forgot the air mattress). So I moved my sleeping bag outside, knowing I had gotten a great night sleep on the soft desert sand before, and I was joined there by his dogs, who welcomed the company (as did I -- I love dogs) as we welcomed each other's warmth. The moon was full and so bright it was like a street lamp, but I found a way to shadow my eyes and sleep.

I woke up just before dawn, which I love doing. I was able to take my morning constitution, get my medication in me and get a good smoke in before people started waking up for breakfast. I watched the sky go from midnight blue, to a smoky Prussian blue, to that green-yellow it sometimes gets right before the rose of dawn begins... Watching the last stars wink out as I hear people shuffle to the outhouse and coffee brewing.

I heard my uncle say something after I had stepped outside the house. It rocked my to my core.

"You know... she's a walking miracle...."

I didn't hear anything after that, but I'm sure he went into an explanation about my health. Still, I had heard enough. He called me a walking miracle. This was a religious man, who didn't say such things lightly. My hosts, of course, didn't know that, but I did, so that he said it about me was all the more humbling. I vowed at that moment to respect his statement and start to treat myself with more respect, and learn the tools I needed to to treat myself with kindness instead of criticism all the time.

Part of that is history in my running This Happiness Project. [And that's my 20 minutes... tune in for more!]

Sunday, July 15, 2012

[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.


Friday, July 13, 2012

[THP] What's My Mountain?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, July 10, 2012

[THP] 20 Minutes of Happy Memories...

As part of my phase in to This Happiness Project, This week, I'm starting the exercise of blogging for 20 minutes on a positive experience, past or present. The idea is that by activating those neural pathways, I will strengthen my ability to recall happy things, even in times of stress and sadness. I'm going to be trying this for 2 months (along with my usual MTLA posts). What's two months to try out a theory, right? The scary thing is, I'm actually really, really bad at this!

Let me just try to start by listing times that I know I've been happy, rather than pulling up specific occurrences. I've been happy: dancing, painting, figuring things out, coming up with a delicious turn of phrase, learning, spending time with my friends debating or enjoying the outdoors, learning about new people... My life has not been a lot of that until recently. I've had ten years of my life not being that. Let me shake off the cobwebs here!

I had a great night Monday night. I went out with a friend with drinks where we were able to share some deep, meaningful conversation, have some great laughs at our own expense, and marvel at the wonder of the Universe. I always love conversations like that, and I'd like to think I'm spoiled by the number I've been able to have in my life. It's conversations like that, that renew my charge forward. I got a great line too: "I don't know whether to thank you, or smack you, for being so right." What can I say? I recognize my kind...

We completely lost track of time. That's how good the conversation was. It was supposed to be drinks to beat rush hour and it turned into, "I needed to be home in bed a half hour ago!" We noticed it got dark, and then kinda forgot about it, until: Oops! Still, he's got a new book for me to read, and it's one whose principles seem to actually work... and it's an ebook no less... Pretty spectacular. I enjoyed my energy drinks, he had his Guinness, I ordered some steak and fries. We talked about the behavior of people and positive attitude training, and how hard it is! Oy, this is a lot of work. But when you see it pay off so quickly, it's like! Give me more of that!

If I miss a day, I know from past experience that the best thing to do is don't think two things about it, but apply yourself next the next day. New habits are difficult, and this is about progress, not perfection. This is about happiness, not getting things right. This is about enjoying this and not beating myself up, but going, "Yup. Happens to the best of us. Keep going. It will become habit soon enough." Everything has a learning curve, even if the instructions are understood. If we do everything right, all we're doing is going through the motions. It's only in recovery that we learn how this stuff is really done.

I had to start my 20 minutes over because I became a Negative Noodlehead two days running. I was ready for a fight, a struggle. I wasn't ready to relax and remember happiness. But I've started over until I was able to think of something, even if it was just Monday, and get some positive experience down on paper. Yes, I am coming out of a dark time. There were moments of brightness in it, but the daily pain would steal the enjoyment away, much like a screaming child can make an otherwise enjoyable plane flight a living hell. (My sympathies to parents who travel!)

I had happiness before then, but that's trying to remember a time before I got sick, and all I end up doing is seeing the sickness pop up in my memory, so I'm going to try for more recent times when the illness was there, but managed. That's only been a few months, but I've been able to go camping since then and even rode a dirt bike! I can tell about that next time. My 20 minutes are past up!

Thursday, July 5, 2012

[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.)


"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!

Next up... What's My Mountain?