Tuesday, December 30, 2014

The Best Laid Plans...

Often run into technical difficulties. My friend flew in from San Diego for the holidays and to take a look at my computer. We finally got a BIOS error beep that told us it was either the video (which wasn't working) or the RAM... Again. So we went to the store, in the awful cold and snow, and got a video card with money I didn't have, got back home (me white knuckling it in fear the whole way), only to discover— of course— it's not the video card. We now get to back to the store, return the video card, my friend gets to fly back home to San Diego with the motherboard and RAM, exchange it again, bring it back on his next visit and put it all back together once more.

Meanwhile, I'm stuck with only my iPad and a laptop with a randomly working display, a battery that won't charge, broken keyboard, and prima donna power cord that doesn't like to be moved ot the whole thing goes off without warning. This is not a good work machine. So I am stuck, once more, writing everything with my thumbs. The scary part is... I'm actually getting good at it!

The manuscript also came back from the editors, and they love it! But they would like me to add more, and I love the places they mentioned, because they were exactly right. I've been too close to the manuscript and I overlooked places where I though I had told the full story, but I clearly had mot, based on their questions. So the manuscriot is not ready to go to typesetting. Which is good, because I don't have the machine to support the next few steps.

Writing continues to be fun, despite my uncanny ability to destroy technology around me. I'll keep everyone updated!

Saturday, December 20, 2014

So When Do We Get to Buy a Copy of Your Book?

Welcome to the wonderful world of to publishing, where writing the book is only half the job! It goes like this:

1. Write the book
2. Typeset the book for publication (the phase I'm in now)
3. Buy first ISBN number for the eBook (required for the next step)
4. Create the book front cover, back cover, and inner jacket material
5. Submit the book and associated material for Approval
6. Wait for Approval
7. Get approval or go back to step 2 or 4
8. Get Proof Copy
9. Make changes and go back to step 6 or approve and publish
9. eBook gets published in about 48 hours, tell EVERYONE.

10. Typeset the book for print publication
11. Buy another ISBN, Bar Code, and a Library of Congress Code
12. Reformat the covers & material for print publication
13. Submit book and materials for print publication
14. Wait for approval (several weeks)
15. Get approved or go back to steps 8 or 10
16. Get a proof copy
17. Check for errors
18. Make changes and go back to step 16 or approve for publication
19. Paperback gets published, tell EVERYONE.

So as you can see, I have a lot of work still ahead of me. I'm doing this on less than a shoestring budget, and I've enlisted a lot of volunteer help. A long time ago I learned: "You can have it quick, you can have it cheap, or you can have it quality. Choose two." I'm going for cheap and quality, which means it's going to take TIME. *sigh*

I was just so happy to write in my blog instead of the book, and I wanted to let you know I was quiet with good reason! As a result I have to ask you one again to be patient, and believe me, you'll know when the book is available for sale!!

[March 10:] It's up!!

Friday, December 19, 2014

How to not "Miss" the Holidays with a Chronic Illness

The holidays are a particularly nasty time for someone with a chronic illness. We desperately want to participate in all the merriment, and every year something happens where I just fall out. This year I got a stomach flu right before Thanksgiving. One holiday missed. My father's recent stroke make it impossible for him to fly for a while (and lord knows I don't want him driving this far at his age...). I have too much pain to drive long distances (anything over an hour pretty much does me in), plus a night-time oxygen machine that is as large as a carty-on itself, and three times as heavy. It's all such a logistical nightmare, that visiting one another for Christmas never happens. Oh, sure, for my father's stroke I would have found a way... but he said, "Stay." Christmas just isn't important enough to pull out all the stops, which can make it difficult to get through!

In past years I've ignored the season, which is easy to do when there's no evidence of the season around you. Seattle was rainy that time of year, just as it was since October, and would be until May or June. It was easy to act like Christmas happened somewhere else, in a land far, far away. Now that I'm in Colorado where the main precipitation is snow, it's a little more difficult to be in "responsible denial." (Denial of certain specific facts, such as an upcoming holiday, to protect yourself from the sorrow of knowing you're too sick to participate anyway.) So I have to find other coping mechanisms.

As a compromise, knowing that I may not be well on the exact day on which the holiday falls, I expand the holiday to strech from December 21st (the traditional Yuletime) until the 4th of January, (what my mother called "the Twelve Days of Christmas"). That way I can celebrate any time that I feel good, and shrug off the days I'm not feeling well, and not feel like I've missed the holiday completely!

This year I have bells on my door that ring cheerily every time I run an errand. I splurged on Christmas lights (and repurposed some of my Halloween lights) that sparkle beautifully in the night. And, friends in-town and out-of-town are coming to see me, which I appreciate so much, because it makes it possible for me to have energy left to socialize, rather than me being exhausted by the mad holiday rush.

I love my family, so we can make it a celebration any time I visit, and it doesn't have to be a holiday. There are family traditions on different days (like our summer family reunions) that can be as special to me as Christmas or Thanksgiving, so it's okay that we're not able to meet face-to-face. We all call one another on the phone or Skype, so we still spread the holiday love around.

So this year, it feels really good to be a part of the seasonal celebrations that everyone else is doing. I love the lights that everyone in my neighborhood puts up. There are some amazing displays that out my little white strands to shame! But what matters is what I do for the season, and this year, I'm celebrating!!

Tuesday, December 2, 2014

Book One is Written! Thank You for Your Patience!

I know I've been hideously absent these past few months, but with good cause! The book— 50 Ways to Make Money While Disabled— is now finished, and the website is set to launch December 15th, so mark your calendars and come subscribe to our Launch Party over at http://makemoneywhiledisabled.com!

This work was inspired by my "Unicorn Sister," Jana (see the link, Medical Unicorn above, for that back-story), who gave me the idea, "Ya know, I bet I could come up with 50 different ways for disabled people to make money, and keep their disability benefits (if they're on those programs). I bet it would work even better for people who aren't limited by federal benefit rules." As it turns out, I've discovered over 150 ways for disabled people to make money, and I'm learning of new ways every day. Jana and I decided to break those jobs up into three volumes to start, so we could get you the first volume as soon as possible.

The book is divided into three parts: the first part gives an overview of the disability benefit system and things you will need to know before you start working if you're receiving Social Security Disability benefits. The second part is 50 money-making ways, with start-up considerations, disability concerns, and the approximate average hourly income for that money maker. The last part of the book covers topics raised in the first half more thoroughly, and includes information on self-employment and where to find resources.

More information in the upcoming post: So... When do I get to buy one?

Wednesday, November 19, 2014

Talkin' Bout My Medication

(With apologies to the Who…) Medication can be a delicate subject with many people. In the U.S., there is the sense that too many pills can make you a “pill head,” something undesirable in a country that believes in pulling yourself up by your own bootstraps. So when it comes to admitting we need additional help, many people are loathe to admit it. There is also still a good deal of stigma surrounding medications, depending on the type. Pain medication (whether narcotic or not), psychiatric medication, and ADHD medication can call cause the medically uninitiated to raise an eyebrow. But those of us with chronic illness know, “They call it a drug cocktail because the number of pills you have to take can fill a shot glass.” How then can we keep ourselves safe?

​One way to stay safe is to stay informed. There are a number of medication websites such as rxlist.com, drugs.com, and WebMD.com/drugs/ that provide important details about your medication. There you can learn what side-effects may accompany your medication and any drug interactions that may exist with other medications or conditions. You should also make sure to write down how often and at what doses you should take your medication, what you should do if you miss a dose, how long before you begin to notice the effects of the medication, and what you should do in case you need to stop the medication for any reason reaction (side-effects too intense, allergic reaction, dosage too strong, etc.), and how expensive the medication is if you're on a limited budget.

​Especially make sure that you take note of dosage instructions from your doctor. Transcription errors often occur, even with the best of intentions. I remember a time when I was given a powerful narcotic after surgery, one that was only supposed to be taken every 12 hours. However, someone in the pharmacy made a mistake and wrote it every 1-2 hours, which would have killed me if I’d followed the instructions on the bottle! I brought it to the attention of my doctor, and she threw a fit at the pharmacy. It was the pharmacy in her building, so she knew a lot of patients went there.

​If you are on significant narcotic painkillers, meaning doses high enough that could cause breathing complications if too many are taken, you may want to look into a counter-acting medication called Naloxone. This medication is a pure opiate antagonist, meaning it cancels out the effects of an opiate-based drug. In fact, some EMTs and police carry this drug in case they need to respond to a heroin overdose. It works just as well for accidental overdoses on opiate narcotic painkillers.

​One important medication issue is medication recalls. Even if a medication is able to pass all FDA safety checks, problems can still arise once the medication is released to the general public. This is not a new issue, but a continuing one as new medications are released to market. For example, Xarelto is used for the prevention of deep vein thrombosis (DVT) in people undergoing knee or hip replacement surgery, but has been recently recalledfor a bleeding risk. If you're worried about medications you take, you can check whether there are any recall alerts through American Recall Center's database. You can also personalize alerts to be sent to you if any medication you take should ever be recalled through their Patient Safety Alerts.

​Another medication issue is disposing of unused medication. It once was the case that pharmacies could not take back medication for any reason, for various legal reasons. However, with the rise of discovering medications in water systems, including drinking water sources, the old “flush your unused pills down the toilet” no longer applies. Many pharmacies now have a drug disposal service with easy drop-off centers. Alternately, you can return unused medication through your doctor, who has the ability to properly dispose medical waste.

​If you’re on important life-saving medication, or have a severe medication allergy, you’ll want to have that information put on a medic-alert bracelet or necklace to inform medical personnel in case of an accident where you are unable to communicate for yourself. Other medications can be kept on a list with dosage instructions in your purse or wallet. And if you're on a medication that may require the assistance of someone else (such as an emergency shot or pill), make sure someone close to you knows when and how to administer your medication for you.

​Medications are wonderful medicine that can keep us alive, relieve our suffering, improve our performance, level our heads, and provide sleep after a hard day. They are to be respected like any tool, and are never to be abused. Like tools, we should be informed on their use and know how and when to use them, and what to do when things go wrong. We should use medic-alerts if needed and tell a companion as necessary. Through proper application and use, medications can be safe. We should stay vigilant, write down what the doctor orders, and ensure what we get from the pharmacist matches. If we have any questions, we can talk to our pharmacist or doctor, or find answers online.

Monday, October 27, 2014

Zen & the Art of Chronic Illness

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

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

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

Boy, was I wrong.

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

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

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

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

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

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

Wow! Who knew?

Friday, October 24, 2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Let's change this!

Tuesday, October 7, 2014

Father, Welcome to My World

My father has leukemia. It is not the fast-moving kind, so there is a blessing in that. People can live for decades with this type of leukemia, and the doctors don't suggest anything should be done at this time. Still, he's frightened, and is now required to see a doctor every six months to check it. He's also already experienced doctor misdiagnosis, as they ordered a colonoscopy seeing a "mass" that was actually one of his own organs. Regardless, they terrified the poor man. He was sure they were going to tell him it was doom. And after going on that medical emotional roller coaster, he understand me and my struggles even more.

I've been sort of poo-poo'ed throughout my illness by both my parents, though my father has been consistently more supportive (my mother calls me names). Now, I have someone else going through what I've been through first-hand. It's different when you almost die and you have over a week in the hospital as the doctors piece you back together. That type of experience does change a person, and does make you immediately assume all other news you receive is going to be just as fatal or near fatal.

He understands me now.

He understands my need to say, "I love you," at the end of every call, because it may be the last time, and he says it first now. He understands how hard I've been working, and he supports my decision to not try and return to full-time work. He's going to support me as long as he can. I'm doing my best to make my own future, and he thinks I have a good idea, and that I should follow my dream. (This from the man who I had to fight to get my education, education that he gave my sister for free... he's always felt guilty about that.)

And he's depressed now. He's struggling. And I get it. It's difficult to have hope for a bright future when the bullet has already left the gun, and it's just a matter of time before it strikes you down. I get that. And I get how painful it is as the disease ravages you, unchecked. He has a harsh future ahead of him, even with all his recovery from the stroke, and that's difficult to know. There is a freedom in knowing what has caused your suffering, if you've been hurting for years and no one can tell you why. It's different when you just think you're growing old, and find out, oh, no... it's far worse than that.

I am doing the best I can to help him, though we have a good laugh at some of my poorer attempts. His eyes have been opened to a grim reality, so I understand that it's not so easy. My heart goes out to him. I know from experience how difficult this road is.

And though I hate that my father is now a part of this club, it's nice to not be so alone...

Thursday, September 11, 2014

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

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

And that's not all.

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

But wait! There's still more!

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

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

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

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

Until then, thank you again.

Friday, September 5, 2014

Walking Towards A Future Me

You'll forgive my moment of darkness in my last post. I haven't ever been around wholly supportive environments. If I had healthy friends, it was purely by accident. I don't know what it means to be "unconditionally loved" and I don't say that asking for your pity, simply your understanding... I wouldn't recognize normal and healthy if it bit me on the nose. But this hasn't always been terrible! I know where my home is... I'm just too medically sensitive to it (me + humidity = NO). And I've been feeling like a lonely little petunia in an onion patch for years now... But I do have a tribe, be I far from them. I have been blessed by the strange and the wonderful, and I look forward to joining your ranks again!!

I get to have standards in my life, and I know what to recognize. I can trust my wisdom, and my ability to avoid danger, and beyond that---my Deity takes care of the rest. I have denied myself my true self for far too long. My life may be broken shards, but how else you gonna make a stained-glass window?

[Pause for a brief announcement:]
I'm still in shock, I just got the news. My father's had a stroke and is paralyzed on the right side of his body. His brother is there, tending to him. He's alive and in hospital. I may be silent for a bit...

Sunday, August 31, 2014

Chronic Illness Haiku

Do not hug me, I'm
Broken, and the sharp shards of
My life will cut you.

Tuesday, August 26, 2014

Just Say No to #YOLO

The You Only Live Once (#YOLO) meme has bothered me for some time, and I've recently discovered why. The Japanese have a saying, "Fools learn from experience. The wise learn from history." But beyond immaturity of the people who use #YOLO as their pre-debauchary battle-cry, the very concept of "you only live once" bothered me, and up until now, it didn't make sense to me. I mean, it's technically true: we do only get one life. But that's not exactly what's being said here. Life is a noun. Live is a verb. And that difference turns out to be pretty important. Because looking at it that way, you discover that "you only live once" is NOT true. I'll explain why...

I live every day. Every day that I am alive, I live. The only way for me to stop living would be to die. So saying "you only live once" isn't true. Once is a single event. But your life isn't a single event. It's a whole bunch of events, many of which we get multiple opportunities to in which to participate. It's "Once Upon A Time" to show that the story you're about to hear is unique. "And this one time, at band camp..." Saying "Once" is to pre-load the meaning that this is a "once in a lifetime" event, only that's rarely ever the case. Additionally, a snappy comeback to #YOLO is #YODO... You only die once, too! Only this never satisfied me as on point... there was something still missing, and I finally figured it out.

Ther real meme should be #YOGOL, or: You Only Get One Life. This properly conveys the importance of living your life the way you see fit, without doing risky behavior like cliff diving to prove a point! You only GET one life conveys the importance of preserving your life while living it for your sake. #YOGOL strips out all that stupid peer pressure of, "Why don't you want to? #YOlO!" and shoves it right back in their face. Just because you've never done something before doesn't mean you should try it! Most people have never experiences a gunshot wound either, and I don't see folks lining up for that once-in-a-lifetime experience!

So the next time you see someone throw down a #YOLO hashtag at you, tell 'em: "#YOGOL & no thank you." Most will try to defend themselves, but a few might actually get the point. There's a big difference in treating your life as a noun, an object that is replaceable, and a verb, an action you perform. By changing the verb to a noun, they've been able to take something that is not true and make it sound true. That's dangerous enough alone, before considering the dangers involved in the #YOLO act they're persuading you to do. It's like knowing a dangerous bridge is unsafe, but teling exeryone it's fine and if no one gets hurt in the process, why bother with the truth? Nothing bad happened, so they have no reason to be angry! Right?

Wrong. Saying #YOLO means you're putting the other person at risk for your own gains using a subtle distortion of the truth. If, by some miracle they don't get hurt, it's no thanks to #YOLO or you. It was pure luck, and luck can run out, so be careful. If they do get hurt, there will be hell to pay (and possible lawsuits), for not informaing the other party of the risks you knew. There are so many things not worth dying or getting injured over!! So let's get together and get folks to drop the whole #YOLO meme and start saying #YOGOL instead. It's time we put these hashtags in their place.

Tuesday, August 19, 2014

Skeptability | Politics in the ER: Five ways Doctors Decide You Are a Drug Seeker

This article is a must read and is spot on: Skeptability | Politics in the ER: Five ways Doctors Decide You Are a Drug Seeker If you're a chronic pain patient, and especially a young chronic pain patient, you know this all too well. ER doctors see patients so fleetingly. As such, they are mostly trying to make sure a process is completed, rather than a patient treated. They leave treatment to your GP. Their job is to stabilize you and get you on the road to recovery (out the door) or transferred to hospital and longer-term care (also out the door). Pain is just a symptom and an annoying one, because it instantly means the government looking over your shoulder. All narcotics require forms in triplicate with a DEA assigned number that allows the, to prescribe those narcotics. But use "too much" (and they never tell you where that line is) and you could lose your career, get sued, and all sorts of woe betides. It's easier to throw a patient out as a drug seeker than to treat them as a pain avoider. Which, of course, suits the DEA just fine. Nevermind that 50% of drug users outgrow their addiction, by their own statistics, they're winning the War on Drugs (and ensuring their pensions).

Me? I'm from Missouri, the "Show Me" state. I'd like the DEA to show me how they've "won." I want them to show me how this has made our society better. Because, that's the point, right? Keep the "bad" elements out of society and only the "good" elements will be left, right? Except, that's not exactly what happens, is it? Because these things are illegal, it automatically involves a criminal element, by definition. And if you can't go to the courts if someone robs you or screws you over on a contract, you automatically involve vigilante justice. That means violence will ensue. You've now made a problem three times as worse than when you started, just because you drew that line and said: "that's illegal."

And what do we do with drug addicts besides lock them up? Hopefully we avail them to a treatment program where ... wait, treatment? Doesn't that mean medical? Why, yes! Yes, it does mean medical: drug addiction is categorized as a disease of biological origin that responds favorably to a regular treatment program, just like any other disease. So what you're saying is, there are certain diseases that make you a criminal. Really? That's what we want to stand for in this country? And have other patients who are at a disadvantage but who aren't criminals caught in the cross-fire as well? Tell me you're starting to see what a bad idea this is...

But we couldn't do that! Decriminalize ALL drugs? There'd be *madness* and chaos in the streets. We would lose all control and descend into a sinful decadence as we all checked out of reality. Seriously? You mean to tell me everyone is just salivating over the idea of getting high, and the law is saving them from themselves? You really expect me to believe that in this day and age? When Portugal has done so, successfully, for over a decade? Even the CATO Institute says the DEA is essentially solving a problem it created, and we'd have been fine if we'd left well enough alone. They're a Prohibition dinosaur that needs to go extinct already. We have destroyed our medical system... for what? Stop people from feeling good in certain ways or amounts? What sort of payoff is that?

We really need to change the culture in this country and wake the hell up.

Monday, August 11, 2014

#MTLA reaches 100,000 Page Views! #milestone

I am pleased to announce that this blog has reached 100,000 unique page views! I couldn't have done it without you! As a reward for your continued support, I give you Make This Look Awesome News!, aka, MTLA News, a weekly newsletter, published on Monday, featuring news from myself and trusted sources in the health government/industry complex, brought to you by Paper.li. Go check it out! And THANK YOU again!!! This is all thanks to you....

The Dangers of "Positive Psychology"

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

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

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

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

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

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

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

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

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

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

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

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

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

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

We would be wise to be wary.

WSJ Infographic:


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

Tuesday, August 5, 2014

It's Bigger on the Inside...

The Japanese & other Asian cultures believe in invisible forces that shape our lives. They aren't wrong. It was this belief that let them realize the Moon created the tides, thousands of years before Western cultures. And I, too, strongly believed in the power of far away forces and their ability to affect my life. Now that I have a real name for those forces, and recognize their comings and goings, it's not so romantic. When I had to find out why winds of change suddenly became gale force winds slamming me to the ground, it became far less dreamy. And when I discovered that, indeed, these forces that now disturb me are the same forces that moved me and everyone around me, and that it's not some juju in the wind, but the wind itself, then it became far less mystical. If you want to hold on to your wonderment, don't try to figure out how the magic trick works. For me, wonder became quickly overrated, as I discovered my internal world could be so much larger than the external world, and not in a good way. Our minds can create Heaven, but then again, they can also create Hell.

For me, it's pretty simple that oncoming storms and barometric changes are going to distrupt my mood and thinking. I know to take my brain and heart with more than a grain of salt. Other people don't, so they assume, as I once did, that their emotions are the real responses to what's really going on. They know about th invisible forces, but they don't know about their true effects, and assume only when wonder is right in front of them that there is a miracle occuring. They jever think those invisible forces sneek into every waking moment of their lives. They don't realize, as I once didn't that We are all Riders on the backs of Elephants, and those Elephants are our unconscious mineds, or (in scientific speak) they are our limbic and hormonal systems, responding to the changes in the world around us, and altering how we perceive things.

When the barometric pressure changes, our bodies must adjust to those changes. When our activity level changes, or our body's needs change, different chemicals signal the systems in our body to flow with those changes. Similarly, when we injest something, our bodies react to it as well, even if there is no "chemically active" componanents in it. It's a change to the body. The body will change in response.

What's not so clear is how all the physical stuff affects the emotional and mental stuff, because those changes are usually very subtle. It's only when the body has extreme responses to small stimuli that we notice them. And boy, do I have big reactions to small stimuli... It was this way that I noticed *everyone* in my neighborhood goes through the exact same changes, only their changes didn't result in pain, so why investigate mood changes further?

Because, like the Orient knows, it's ALL connected.

Here's how it works.

Serotonin & dopamine (our happy chemicals) also regulate blood pressure. Barometric changes effect the air around us, which in turn effects how our bodies must respond. To ensure proper continued function, as the weather changes, so must the pressure inside our bodies change to adjust to the new exterior conditions. This is why many people get sad when it rains. Not because it's gloomy, but because their mood drops due to a drop in dopamine and serotonin, as it's used by the body to regulate internal systems. The effect on mood is small, but profound enough to start fights, make children hyper, and others weepy. Unconsciously, we seek sunny days, not because of the bright light (though that too, helps mood because of chemical responses), but because high-pressure days, when our bodies have excess of serotonin and dopamine, means they're not used to regulate internal pressure, and we have excess to elevate our mood.

For me, the invisible forces aren't outside of me in some grand universe.... They're INside me, in a grand internalverse, that is far larger, and far more influential on my life. The storms within are far more devastating than any storm without. And subtle changes, like how much oxygen I get in my sleep has profound influence on my hypersensitivity and pain. Invisible forces don't have to be as big as the moon to sway our tides. They only need be as small as an atom, and our entire being can be thrown into flux.

The invisible forces are very real. Pay attention and you'll see them. But don't look too closely if you don't want to see the trick.

(P.S. My apologies to Doctor Who fans for the lack of Time Lord references after a title like that ;)

Saturday, August 2, 2014

Coming up for Air

Literally and figuratively, I'm finally getting some breathing room. First, I got some economic opportunities that may really open some doors for me. I have a roommate whose company I enjoy, and so my responsibilities are slowly being taken care of. That, and I'm on day three of sleep oxygen support, and it's having amazing results. Today, I woke up and didn't have to coffee my way to awakeness! It was such a strange feeling, because I've never experienced that before now. It was like getting two hours added to my day that I never expected to have. I was able to start my day immediately without having to wait for my prednisone to kick in. Unheard of!! The effect on my mood has been monumental. Though I'm still having bouts of daytime sleepiness, I am hopeful for the first time in a long time.

So, I should be able to start doing more soon, but I still have a few fires to put out, so thank you for your patience! ^_^

Wednesday, July 9, 2014

"Placebo Effect" Causes Greater Harm than Good

A review by Psychology Research (@psychresearch) of 21 randomized trials shows that the "placebo effect" causes adverse side-effects in 45% of study participants. This is an absolutely fascinating result, because previous studies of the placebo effect show that a pill that has no medicinal value whatsoever causes participants to improve at a rate of only 35%. What this means is that taking a pill with no medicinal value whatsoever is more likely to cause Harmful effects at a greater rate than it provides a benefit. This could have a lot to do with medication non-compliance and aversion to doctors and hospitals. If nearly half of people report an adverse effect from just taking a pill, and only a little more than a third report a positive effect, then it's no wonder why most people are adverse to taking medication!

I've always though reports on the placebo effect were a bit silly, and now it makes sense why. Scientists and doctors were always delighted to point out that we stupid patients were dumb enough to be fooled by a sugar pill. Doctors took this as proof of their magical, majestic auras... That just the idea that what you were taking was a "medicine" was enough to make you better! The idea of a magic pill was so powerful, that the medicine didn't even have to be real. Patients would get better just because you told them to. How amazing is that!?!?!

Turns out, that was only part of the story, and not even the most important part.

In fact, the though of a medicine is so powerful that it actually HARMS patients at a rate of nearly half. Nearly HALF! That means that patients are so leery, so worried about what their doctor is doing to them, that they will experience an event that convinces them a sugar pill is damaging them.

This experience of harm at a greater rate than help actually fits with what we already know about the human brain. We experience loss at a rate of three times higher than gain. For example, if you insult your spouse once, it takes at least three compliments to make up for that one slight. Similarly, when frightened, we will assume that the noise in the grass is a tiger, rather than assuming it's the wind. Why? Because that's what helped us survive vicious predators as stone-aged cultures. In the past, it has been biologically advantageous to assume the worst. So our brains are hard-wired to do so.

So it makes perfect sense that patients would report rates of greater harm than good from a medication that does nothing. And doctors should realize that they are working at a disadvantage when patients are left to guess whether a medication is going to cause harm or good. The placebo effect is NOT some positive powerful force. The placebo effect is, in fact, a powerful NEGATIVE force, and one than can undermine the entire true effect of a medication! Studies prior to this have shown that chronic illness patients have a medication non-compliance rate of a third to one half, and now we know why. It makes perfect sense, and the myth of the positive placebo effect being the only force at play is totally BUSTED.

We also now have a new understanding of non-compliance. It isn't willfulness. It isn't a lack of willpower or an inability to form new habits (though these things can exacerbate the problem). What is really at work here is the fundamental nature of the human brain to avoid harm in situations where not all the variables are known. If this doesn't speak volumes for the need for thorough patient education, I don't know what does. Humans are survivors, and you don't survive by assuming everything is just fine when you know there's something going on that you can't see. Taking a medication is a RISK. So naturally, it is better to assume that the medication is more likely to harm than help when you don't know what it does.

This also speaks to the great divide between doctors and patients in our current medical system: doctors assume that their patients should just rely on their expertise. However doctors get so involved in science that they lose sight of common sense things and get lost in ego-boosting preliminary results, like the belief that the placebo effect resulted in automatically better results for a medication. I don't know how many years it's been pounded into my head, "well, you know, you'd feel better if this was a sugar pill, so I don't know why this real medication isn't working on you..." Well, doc, turns out it's because you were misled to believe just because you have M.D. After your name that means I view you as a Minor Deity. As things really are, M.D. implies Maybe Disaster and you terrify your patients, leaving you at a deficit the moment you show up.

If I could have one wish, it would be to educate the entire medical field about this. We need to wake up to the realities of how I humanely we've been treating patients by keeping them in the dark. We have been willfully inflicting patients to psychological damage as a result of our treatment of them, believing our medical professionals are supposed to be seen as intervening angels, when really they were seen as cloak-and-dagger devils. And as long as we were told that medicine worked a third of the time just because it was called medicine, the angelic myth persisted.

The fairy tale is over. It's time to wake up to reality.

Side Effects: Telling the Real from the Imagined - Wall Street Journal, July 7, 2014

Monday, July 7, 2014

All the King's Horses & All the King's Men

One thing I wish people understood about me is that when I freak out about something, it's not some phantom that my mind has created, some imaginary boogieman, no... If I'm freaking out it's because this is something I've experienced before, some major trauma, where I can see where I'm headed and I'm desperately trying to avoid that fate. I've come by my pessimism and cynicism honestly: that is, I'm not cynical about doctors because it's cool to be cynical about doctors. No, I'm cynical about doctors because I have been let down, betrayed, and permanently injured by doctors. I had youthful optimism once. Now, I am no longer a youth, I am a middle-aged woman and I've been around the block enough times to know that optimism is rarely well-founded.

So what's a girl to do? I could let my cynicism and pessimism turn to bitterness and bile, choosing to see myself as a victim... Or, I can look at things from "the other side of the chessboard." What this means is abandoning my point of view, and looking at my situation from my opponent's point-of-view. In chess it's a way to practice by oneself by literally turning the chessboard around, and playing the game from your opponent's side. In this way, you can see what they're seeing, and get some insight into not only their moves, but how they perceive your moves.

For example, I have a neighbor who is openly hostile towards me for some unknown reason. He's rude, a bully, and is spiteful in so many ways. Now, I could either choose to see myself as his victim, as his attacks are squarely aimed at me... Or, I could view things from his point of view, and that is, all I have to do is show up and his day is ruined. He gets so upset just by my presence, that the one with the power in this equation is actually ME! He's given me power over him to an enormous degree. He's not attacking because he believes he's stronger than me. He's attacking me because he feels weaker than me! I'm not the victim here at all. He is, and he's doing it all to himself. I don't need to do a thing...

So even though no matter what I do I will hurt, and even though I cannot live where I want with the type of people I love... Even though I'm not strong enough to take care of myself, and there are ways in which I cannot be helped at all... Even though I have to accept less from my body, that doesn't mean I have to accept less for my life!! I can learn to live happily at this new pace. I can find new things to enjoy and bring joy into my life. I can make new friends, of quality, who also share my newfound quality of life.

Because I didn't always know what brought me happiness. That was something I had to discover over time. When I was a teenager and was under a period of profound transformation, I had to find new ways of coping, because what I did as a child to cope no longer sufficed. And I had to find new coping mechanisms in college, because my teenaged ways not longer met muster. This happened again after college, and again after 27... I was working diligently towards an entire new set when my life was disrupted by illness. So if I'm completely honest with myself, this type of discontent with my coping mechanisms is not something caused by my illness, it is a regular, normal process throughout my life as I grow and change. The illness limits my choices, to be sure... But my choices would also be limited (in different ways) if I had children. The facts are different, but the feelings are the same. Knowing what makes me happy is an ongoing process, and if I just relax, eventually I'll discover something that will fill me with joy & help me cope.

Yes, the illness changed me in ways I don't like. But life changes everyone in ways they don't like. Everyone experiences pain, despair, heartache, and profound loss. No one is immune. No. One. There is no special reason why I should feel sorry for myself. This isn't a competition for who's got it worst, nor is there any reward for being the most pitiful. I can hang on to my anger, blaming my illness for all my misfortune (which is an easy case to make), or I can realize that everyone deals with misfortune and traumatic loss. This just happened to be mine.

If I'm able to realize that holding on to mediocre I am denying myself the opportunity to find better, then it makes letting go of what doesn't work in my life, and finding the patience to wait for what does... Then the losses aren just losses, but welcomed relief as they are replaced with something better.

Tuesday, July 1, 2014

My Most Fortunate Mistakes

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

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

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

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

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

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

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

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

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

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

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

Tuesday, June 3, 2014

[Video] What is a Migraine? #MHAM

This video, made with @AdobeVoice, is a short educational piece on #migraines for Migraine Headache Awareness Month (#MHAM). Enjoy!

Monday, June 2, 2014

June is Migraine Awareness Month! #MHAMBC (late)

 “What would you do if your dream of a totally pain- and symptom-free life, came true?”

First, I would return to work, no question. I would have the strength to work full time, and do an entire second activity full time, with time left over for a social life. It would be glorious. I would start my own business to serve the invisible disabilities community with this extra time (just because I made it out doesn't mean everyone else has), and I would have the resources from my full-time employment to do so. I'd be able to strengthen ties with my family as well, being able to travel to and attend family reunions. I would be able to "come home for the holidays" again and spend time with my parents while they're still here. I would be able to hold my baby niece and nephew, and even have children of my own. 

Without the occasional reminder of how devastating these symptoms are, I would start to forget just how overwhelming and helpless these invisible forces can make our lives. I would forget the dread of knowing Symptoms Are Coming, and how much of a struggle it is to keep afloat of simple tasks. I would slowly forget what it feels like on the inside, and only have vague memories of the problems it caused for me outside. I would still be grateful for every moment, and I would be able to keep calm in the face of great adversity (because nothing in the work world compares to a crippling illness), but the intensity of that gratitude would slowly fade to a consistant joie de vivre. My desire for accomplishment would grow as the long shadow of my disease retreated. 

I would know what it feels like to wake up and be excited about what the day has to bring. I would fall asleep confidant that I will be as capable tomorrow as I was today. Fear of people and of economic insecurity would leave me. I would be capable of fulfilling my duties as a daughter, as a sister, as a citizen, and as a member of the human race. I wouldn't fall over just because of a change in the weather. 

I could enjoy the rain again. 

Tuesday, May 20, 2014

The Insecurity of Chronic Illness

My father once told me that by the time he was forty, he finally felt like he'd "gotten his legs beneath him." Meaning that he finally felt like he knew what he was doing, had this "Life" thing pretty well figured out, and he was able to propel himself forward from his own efforts. I can tell you with a chronic illness, I have no such knowledge. Just because I felt one way on Monday doesn't mean I'll feel the the same way when I wake up on Tuesday. The instability of that makes me feel incredibly insecure, and I know I cannot reliably propel myself forward. I have no legs beneath me, and on Monday, that manifested itself literally. i woke up and couldn't walk.

This wasn't the same as waking up with one of your legs asleep. That happened today because I was sleepwalking last night and fell asleep in a weir position. But yesterday was not that at all. When my leg is asleep, I can still put weight on it and the limb pretty much responds, even though I can't feel much and have pins & needles. What happened Monday included NO pins & needles, the leg wouldn't respond at all, and I couldn't put weight on it, period. I would fall. It lasted for about a half hour and then magically went away. It was terrifying, suddenly not being able to walk for no reason and with no warning. I found out this happens to my Unicorn Sister too. I talked with her more and found out she has Narcolepsy as well!

My body has a will of its own, and that will is stronger than my own. I do not feel safe in my own skin. Who would? I don't feel like I can get my legs underneath me in real life, how could I possibly feel that way metaphorically? How can I feel like I've figured anything out, when the rules keep changing from day to day? My body is unreliable... how can I possibly propel myself forward? Gods, I felt more secure in my twenties than I do now, and I was horribly unsure then! I didn't realize how much I had to be sure of, and now that I've lost it, I realize how much I took for granted when I was young.

It's time to regroup and reassess. My Unicorn Sister and I cam up with an idea, and we're praying it works. I'm going to go see a doctor in Arizona where she (my Unicorn Sister) is also a patient, and see if the doctor can draw some conclusions based on similarities between us. Not being able to walk was terrifying. Knowing that my Unicorn Sister has also experienced this symptom and the Narcolepsy.... since it's going on with both of us and we both have the same rare autoimmune disease, there's got to be some breakthrough we can manifest having both of us seen by the same doctor! My appointment is in the end of November, however, so there's a long wait for any answers.

In the meantime, I must take what life dishes at me and deal with it the best that I can. It means that day-to-day I have no idea of what I'm capable of: sometimes I'm an amazing, shining star, sometimes I'm the tail light of a septic truck that flickers on road bumps. I can't tell you which day is going to be which. I can only do my best when I am able, an rest up when I am not. I really don't have a choice in the matter! lol

Sunday, May 18, 2014

Medical Bullies

I woke up today and I couldn't walk. It made me realize something. I'm being bullied. Despite my current apparent kidney health, I am not wrong that there's a fatigue issue going on, one that is clinical in nature. And I was never wrong about my symptoms that led to the diagnosis of Autoimmune Hypophysitis. What I'm experiencing here is a form of gas-lighting. They're telling me, "Yes, the results are abnormal, but we think the cause is the medication, not a disease..." Really? You think I was perfectly healthy, went on a medication, and now I'm sick as a result? Hold on here, that makes no sense.

I was first diagnosed by a Cardiologist in California who was looking for the exact *opposite* result in my bloodwork, because we were looking for causes of tachycardia. That was reaffirmed by an Endocrinologist who DID NOT believe I had what the Cardiologist found. My adrenal glands shut down in the presence of the stimulating hormone. I wasn't just low, my Adrenal Glands responded in a way that they should not. Additionally, he also didn't think my pituitary was involved, but agreed to test it because, and I quote, "I was wrong the first time!!"

I remember at first, I didn't want to be on prednisone, and voluntarily took myself off it for a month, but my endocrinologist showed the labs to me. She said you need to be on prednisone in no uncertain terms, and if not, you're risking your life. This was after all nerve blocks to try and control my migraines had ended, when I was receiving care in Everett Washington, before I had any pain relief from the headache clinic.

It was reaffirmed in Seattle again when I moved south and picked up a new Endocrinologist. There was a time under her care when I knew I was over-medicated, too, and again, voluntarily came off my prednisone. This time, however, the labs came back normal. It was then that we scheduled me for the neuroendocrinologist, or what I like to call a specialist to the third power (or specialist3) because you have to go through two layers of doctors to reach this guy. We knew that there was really only two reasons for hypopituitarism to go away: 1 - childbirth (and I've never been pregnant, even when trying - a clue itself) and 2 - autoimmune.

We had an MRI taken in this time, right as I began to get symptomatic again: I was nearly fainting after standing and just taking a few steps. This was a harsher version of when I first showed symptoms, when I was nealy blacking out from climbing two sets of stairs. Stair-master exercise machines were the worst. Just a few seconds on the machine, and my vision would tunnel, colorful or black & white spots would appear in my vision, and my whole body would start to go limp. This time, just three steps would bring me to my knees. The MRI came back "dirty" --- there was clear indication of lymphocytic invasion of both my pituitary gland and stalk. We finally had our smoking gun.

Why these people don't want to believe me now is baffling, but I need to stand my ground. I see my new GP next week, and hopefully she'll take over prescribing my prednisone, because my old GP refuses. How they can look at an abnormal result and prior evidence as to the cause of these abnormal results and say, "Nah, you can come off all your medication and you'll be fine!" is criminal to me. To threaten my life in that way boggles my mind.

I had reduced my medication the past few days to see if I could go off long enough to be able to have the tests show this again, but when I woke up this morning and my left leg didn't work, I decided against this course of action. It was the strangest thing. It wasn't "pins and needles" as you would feel if you'd lost circulation that way. No, there was just no feeling, and if I tried to put weight on it, I just fell. It collapsed underneath me. It was the most terrifying experience I've had to date.

I need to be at my medically best when I see this new GP. I have a new symptom which warrants extreme concern. I am not a happy camper at all. I am not well, but we can figure this out and manage it. However, I need physicians who are on my side and helping me search for answers, rather than denying the reality that is in front of them and placing obstacles in my way!

Since it's not kidneys, there should be something we can do to manage the fatigue. Since I'm experiencing new debilitating symptoms, we need to look at what else is going on in my body.


All I want to do is be a constructive member of society. Is that too much* to ask?

*Yes, quite possibly.

These medical bullies need to get gone.

Friday, May 16, 2014

Patient Non Grata

I wish I could say I did something wrong. I wish there was something in my behavior I could correct. I wish there was some sort of misconduct on my part for which I was being reprimanded. But there's nothing. I've done everything right. I've followed all the instructions. I've done everything I was told to do. Yet my GP is still washing his hands of me, and has no one he knows who does Internal Medicine and takes Medicare that he can refer me to.

Really? You work in a low cost clinic, and you know of absolutely no one else in the entire state that also does what you do? You suddenly completely forgot how to use Google? Excuse me while I find that a little difficult to swallow.

Meanwhile, my test results continue to come back abnormal, only to then have the doctor tell me, "There's nothing wrong here. You should stop taking your medication. That's what's making you sick."

Really? Because I remember being a HELL of a lot sicker BEFORE I was put on medication. And bakc then when the test came back abnormal, they put me ON medication, and --- you're not going to believe this --- I felt and got BETTER! Holy $#!+, what a concept!

I don't understand what's happening here. I don't dare leave this state because this is the first time in 10 years that I have pain & nausea control. But now it looks like I may be screwed anyway, because these people don't want to see or treat me.

I will call a highly-ranked GP tomorrow and see if she'll take over care, but I'm reasonably terrified.

Mother of Gods, what am I supposed to do?

Wednesday, May 14, 2014

The Loneliness of Illness and Pain

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

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

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

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

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

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

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

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

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

Oh, but we aren't.

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

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

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

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

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

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

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

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

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

Thank you for understanding.