Make This Look Awesome...

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

2013-05-01T00:00:00.000-06:00

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!!!!

From a fan... #mtla

2013-03-18T10:59:00.000-06:00

During WWII, the British had posters to help people deal with the bombing raids from Germany (the blitz). ‘Keep Calm and Carry On’ - this poster was to issue it only upon the invasion of Britain by Germany. As this never happened, the poster was never officially seen by the public. Sadly no record remains of the unknown Civil Servant who originally came up with the simple and quintessential Britishness of the Keep Calm and Carry On message. However, since then, this poster has inspired a whole slew of copycats, including this one from my Unicorn Sister! I just had to share...

Thank you!! You definitely make yours look AWESOME!

Prayers for my Unicorn Sister

2013-03-14T09:25:00.000-06:00

I've just gotten some terrible news about my Unicorn Sister. She's been given the diagnosis of Dercum's Disease, one of the worst of the worst. And in combination with the pituitary disease we already have, this is a show-stopper. Though she has a reason for all her pain and fatigue (which for a while has been far worse than mine), her weight gain, everything.... it was ALL the disease.... The prognosis is NOT good. No known treatment. A miracle away from a cure. And it can be lethal. Please, please keep her in your prayers to whatever deity you believe in, or even if you don't.... put out a good word to the Universe for her. She needs it.

My Secret Triumph

2013-02-26T12:30:00.002-07:00

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. ;)

Everything happens

2013-01-03T16:37:00.000-07:00

I have heard the phrase: "Nothing, absolutely nothing happens in God's world by mistake." I've long since lost the urge to punch people in the face for things like that. Usually I smile and nod, knowing that they don't know what they're talking about. Additionally, I know the guy who wrote that suffered horribly at the end of his life and felt very much like a mistake had been made... many mistakes, great and small. But I've figured something out in the past couple of days. It's not that everything happens for a reason. It's just that everything happens. Period.

Reason and meaning is what we bring to life. Gravity doesn't exist so my feet can touch the ground. Gravity was there, and I developed in it's effects. When things happen in our life beyond our control, we didn't put those things in to play. They're beyond our control! By their very definition we couldn't have brought those things into play. These larger effects that we live in, like chronic illness, have nothing to do with any reason. It just is. Any reason and meaning is what I bring to it.

Early on in my disease, I figured out that the pain wasn't punishment. Because I could do everything right, and my head would hurt. I could do all the "wrong" things, and my head would hurt. Intensity, manner of onset, aura, sensory sensitivities... all that was completely random. It was a migraine that just didn't quit. So I knew, after about 6 months, that it wasn't anything I was doing wrong. It just was. And if it just was, then it couldn't be my fault, and I didn't have to feel bad about it.

Yeah, this is not the life I wanted, worked for, dreamed of, etc. etc. But it's some person's dream. There's someone out there, who's got it worse than me, who is wishing they could be me. I've been looking at this whole thing all wrong. Yes, things have been taken from me: reasonable expectations have been taken from me. I had the reasonable expectation of being a mom. Nope. I had the reasonable expectation that I could live a narcotic-free lifestyle. Nope. I had the reasonable expectation I could live where ever I could afford to live. Nope. And I could go on...

The point is, the bar has be raised. I can live nothing short of an extraordinary life. It's impossible at this point. Hell, the fact that I'm alive is a miracle several times over. Most people I know would have to get into to some pretty extreme activities to be able to risk their lives every day. Me? I just have to wake up in the morning. I give death the bird each day that I take my pills like I'm supposed to (barring any sudden accidents, of course).

And somewhere, I heard a voice say, "Good, lord, woman, do you know how stubborn you are? The only way that we could get you to give up on these dreams was if we ripped them from you completely. Otherwise you would have found a way around it! So we had to resort to drastic measures, or otherwise you wouldn't be available for what's coming next..."

"So, if you're frightened of dying and... you're holding on, you'll see devils tearing your life away. But if you've made your peace, then the devils are really angels, freeing you from the earth." -Jacob's Ladder

If I want this life to have the fulfillment that I knew I could get from my reasonable expectations, then it's gonna have to be big, because those were big dreams of mine. It's going to take a lot to fill that void. I don't know what I'm going to be yet, because I'm just learning what this new life is capable of, within my limitations. And that's going to take a lot of time.

To put it another way, right now, I'm only 10 years old. My new body and my new life is only 10 years in the making. I had no idea what I wanted to be when I was ten! I knew what some of my desires were, some of the things I like and don't like. But I hadn't experimented enough, or explored my desires enough to even know what I wanted to do with my life. That took damn near twenty years to figure out!

I remember when it came close to time to graduating from college, I freaked out because I had no idea what to do after that. I had no idea where to go with my life. I even went to a professional counselor, because my panic over my future was starting with my ability to accomplish it in the present. It took years for me to figure out the dreams that have now been taken from me. And I had no limitations at the time!

This time, I'm trying to come up with the same big dreams, only now on "expert level." The only way I'm going to be able to accomplish that is by looking at what was taken from me, and changing my perception of it, so that the loss is in fact an opportunity.

I can't be a mother and know the joys of making a life and raising it in this world. But what opportunities do I gain because I don't have children? My "adopted nieces" are wonderful. But just like my illness, having those girls places limitations on my friend's life. She make take them in stride because it's all worth it...

So what if I looked at the limitations of my sickness and decided "it's all worth it"? What if I did that ahead of time, even though I don't know what that worth is yet? It's easy to see the worth in a child's life and to write off the personal costs and limitations. You know when you have children that the goal is to raise them so that they can then go on to live their own lives. That's even biologically driven. The outcome, hopefully, is your loving adult children. The outcome of my illness that makes all this suffering worth it... that outcome is a mystery.

Right now, I don't know what I want to even start to explore that mystery. But that's okay. This "second-hand life" is only 10. I didn't really start knowing what I wanted until I was around 15, and even that took a lot of experimenting and slogging through experiences I didn't like. I need to go out and find new things, explore, find new loves, new excitements, new spice to my life. I need to give it time.

Everything happens. If I want to bring reason to that, I've got to find a way to make it all worthwhile. My original dream would have made the stings and arrows all worthwhile. But that's the easy answer. What's harder to know is how to make it all worthwhile without that. I have to try...

The easiest way for me to forgive all that's happened to me, the way that I let go of the bitterness of not having the reasonable life I wanted, is by assuming I have been "called" to a more difficult life, but one that will ultimately be filled with glory that surpasses anything I could have hoped for. I have to assume that I don't get reasonable because, beyond my understanding, my talents would have been wasted if I had gone that route. And the voice was right... if there had been even the slimmest chance of me getting the life I wanted, it would have been mine.

So maybe a little faith in the Universe is a good idea... We'll see, right?

"What you leave behind is not what is engraved in stone monuments, but what is woven into the lives of others." ~Pericles

WEGO Health Awards Nomination!

2013-01-02T16:25:00.002-07:00

Holy carp, I never expected to get this email: "Congratulations! You’ve been nominated for the Health Activist Hero Award in this year’s WEGO Health Activist Awards!" Wow... I'm humbled! I'm sure I'm up against so heady competition, so I'm just happy to be nominated! (I see MyNewNormals.com in there, so I'm among giants.) I'm so honored!!! Squeee!!!!

If you seek a teacher, one will appear

2012-12-31T19:32:00.000-07:00

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!

Fighting Bitterness

2012-12-29T22:47:00.000-07:00

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!

A Diamond in the Coal

2012-12-12T23:12:00.001-07:00

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

2012-12-12T13:40:00.001-07:00

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?

F.M.L.

[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!!!

Pitting the Healthy Against the Sick

2012-12-11T16:43:00.001-07:00

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.

No Happy Thinking Required

2012-12-02T18:07:00.000-07:00

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.

Stop Negative Thoughts

2012-11-27T14:05:00.000-07:00

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!

Thankful Thanksgiving

2012-11-24T13:50:00.000-07:00

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.

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

2012-11-06T15:11:00.001-07:00

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)yahoo.com
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!

What Do I Stand For?

2012-10-11T16:14:00.001-06:00

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.

Reflections on My Trial Work Period

2012-10-02T16:49:00.001-06:00

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.

WEGO Health Activist Award - Call for Nominations

2012-09-23T14:30:00.002-06:00

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!

Invisible Illness Week - Post # 300!

2012-09-16T21:13:00.004-06:00

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: http://www.ncbi.nlm.nih.gov/pubmed/9682332] 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.

Nervous working...

2012-08-27T08:45:00.007-06:00

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?

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

2012-08-25T13:33:00.005-06:00

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.

I just watched "The Secret"

2012-08-13T08:11:00.010-06:00

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.

Take a deep breath

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

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

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

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.

[/rant]

* 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.

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

2012-08-12T11:46:00.003-06:00

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.

BULL$H!T

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.

[THP] 20m Happy Memory - Hopi Reservation

2012-07-18T21:16:00.006-06:00

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!]

[THP] 20m Happy Memory - Pain Control

2012-07-15T20:47:00.004-06:00

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!!