Monday, April 28, 2014

Dear 16-Year-Old Me... #HAWMC

Reach for the moon: Even if you miss, you'll still land among the stars. It's is ALWAYS okay for you to want better for yourself. Don't let anyone tell you that you don't deserve it. You and I both know that deserving comes from earning and earning comes from hard work. Repetitive work. Work that is going to hurt your feelings and break your heart. But you know it will make you stronger. If you can learn how to hear the criticism and use their words to build upon, you can eventually make them eat those words.

Realize that though it feels like that page is all that stand between your naked body and your audience, know that image you have in your head isn't true. They don't see you... they see the page. The page has its own life. And if you want that life to be long and beautiful, then who are we to let our feelings get in the way? This is for the good of the page, like for the good of a child. You must nurture your talents so you will be able to nurture those projects, and pick them up when they've fallen down.... You have all the power in yourself to do this.

Never be afraid to reach for better. Oh sure, they'll all tell you that happiness is learning to love what you have, and that's true!! But if you can earn better, if there's a chance for your own success, go for it! But be wise. You are wise right now, but you are also innocent: a Sophomore as it translates from the Greek. You have the knowledge but lack the experience. However, here comes the tricky part: unlike your studies where you want to learn how to go as fast as you can, with experience, you need to learn how to make it LAST. Which means slowing down. And believe me, you'd rather go down slowly than crash to the ground.

Zoom-zoom is not all it's cracked up to be. There's a reason why the Thieve's class in Dungeon's & Dragons has "fast talk" as a skill. You saw those hustlers when you lived in NYC. But you don't have the wisdom yet to see those traits in the people closest to you.... be careful... be wise... And don't worry about how it all turns out. You really like yourself, so you're always in good company.

There will come many times in your life, however, where circumstances will make you feel like you've been ground into powder, turned into paste, smeared on the sidewalk, ground in by a shoe, and pounded into a forgotten stain on the sidewalk, only to be eventually stamped into nothingness by the millions of pedestrians who don't even realize you're there. I'm you, all grown up... I know how low your brain goes and honey-child, all I can say is I am so sorry. You are not that worthless. In fact, what is so incredible about you is that you have such a range to be able to go from darkness to blinding light.

Just because your little lamp is low doesn't mean it's a bad thing. Fireworks are like notes... if they happened all at once, it wouldn't be as fun. There are pauses between the blasts for a reason. Use that to your advantage. No one has to see what a mess it is back stage as long as the performance goes off without a hitch, right?

Remember, Life is what happens to you while you're making other plans... Your will is great, and your spirit is strong. You will go through trials, but keep fighting, you can prevail! You love that game anyway... You know the type of determination combined with relaxation that it takes to master those skills. So don't like the setbacks stop you. Keep working at it, girl! You've seen that you know what you're doing to achieve the kind of mastery you want to achieve.

That difference is important to you: you aren't about winning. You aren't about self-aggrandizement. You like to include, rather than subjugate... you have a sweetness about you like that, and keep that precious to you. Know that you will let the other guy win and be happier that they won, rather than showing off what you can do. You already know what you can do, so why not give someone else a chance? Preserve that as much as you can, no matter how hard life gets on you. You'll be glad you did.

Life will get hard on you, you've known that for a while. What no one has told you yet is that losing yourself doesn't happen quickly. It happens one bad decision at a time. No one is going to save you from bad decisions. That's why you should always reach higher... not because of goodness or right, though the world could use more of that... But because you should love and nurture you to grow, just like you would nurture a project or page.

Picking yourself up is done in the same way: One good decision at a time. You'll eventually get over how scary that is and realize even if we're the one's who've screwed up, the best thing to do is own it rather than be ashamed of it. Owning it means you keep your power. Being ashamed means other people have power over us.

Remember the story your mother told about losing her orders in the Navy: "This isn't the first time in the history of the world that this mistake has been made. So how to we fix it?" Focus on where you want to go, not the problem you want to avoid, and you'll get the results you seek. Like busting the breakers on Jones Beach: Plant your feet; Turn your shoulder into the oncoming wave; Slice through the wave like a blade; And leap safely to the other side. Just a breather, though, because it's on to the next one on the Ocean's schedule!

If you try to just walk in, like you would walk through air, you'll get bowled over, splashed in the face, choked of air, and look like a fool. Try to dive under and avoid it all, and end up swept by the currents far from your destination. you may even catch an undertow and be swept out to sea! Face it like a warrior, with the dedication and heart of a warrior, and you can prevail! And we never forget the Sea is in charge here: It's easy to get in trouble, so don't head out beyond your depths until you're ready to handle it.

You're doing fine right now. I know you're dealing with a world of $#!+, but hang in there, you'll make it out okay. I gotta say, I'm kinda impressed. And don't worry so much!! It's all gonna get better after High School, I promise.

You, all grown up...

Sunday, April 27, 2014

Book Report #HAWMC

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

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

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

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

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

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

[ted id=1983]

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

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

Friday, April 25, 2014

The Shortest Sentences in the Human Language #HAWMC [LATE]

Wait. That's a word in the 'shortest sentence' in the English language category. The shortest sentence in the English language is: No. I can handle wait. Wait is no problem for me. I can even handle wait at Level 10 pain... and believe me, my Level 10 is no joke. What I don't like is wait...wait...wait... Psych! Just kidding! I really meant: Never. That's some uncool $#!+ right there.

And there have even been studies on it... if you let people know what time the next train arrives, they're less anxious. If you let people know how long the drive will take, they're less likely to speed, even if it means they'll be late... in this age of cell phones you can just call can inform your party.

No is just... no. How do you get around that? No. It's a denial, a wall, a deep dark hole... No. You need more letters to create or even insist! No is just an ending. What comes after no? Silence.

Dealing with no is hard. I know. I have hard time with no. I had a mother who would pull out no first, even if it was something I desperately needed. So I learned how to out stubborn her. That has been a boon and a bane in dealing with doctors. Some react just like my mother and I eventually win them over with facts and evidence. Some are like my ex-boyfriend who take no to a level of extreme heights, you need a telescope and a star chart to see them.

"See that second star on the right?"
"You can see a flag that says "NO!" just beyond that horizon."
"Oh yeah, now I see it!"

But no is not always defeat. Our path from our birth to death is rarely a straight line! Or at least you hope it's not... it either means your life was very brief, or it means your life was very boring. Both are horrible outcomes! No, when it's followed by helpful or better information is actually a good thing.

Did my father die of a heart attack at sixty? No, he got to a cardiologist and they were able to put stints in, avoiding the heart attack. Were we able to make our flight? No, it got canceled due to weather, but we met this marvelous couple in the lounge while waiting for your next flight. They were going elsewhere, so we never would have crossed paths otherwise! Did you graduate with a chemistry degree? No, I got an English degree, but I combined it with my love of computers and became a technical writer instead of a doctor. I can still practice my craft, even if I'm not employable in the traditional sense. I could feel a lot more useless than this! lol

No can also mean no, not yet. But as I mentioned before, that's just means waiting, and I'm cool with that, as long as there's a payoff. Some say, A bird in the hand is worth two in the bush! And while that may be true, there's also the marshmallow study which shows children who can resist temptation are more successful later in life. And I've seen that in my life on the daily. When I'm able to be patient with others, they relax and are more willing to work with me. Patience is an amazingly powerful skill. I may want things to be Right Now! and Quick Like A Bunny!!! But that doesn't mean everyone else wants it at that speed. Some people just don't move at that speed. Others just prefer to savor life's moments. Still more just can't go that fast, and that's okay. So no can mean, no wait a minute, let me explain.

My apologies for the lateness of this post, I meant to write yesterday, but the muse had not yet arrived. Thank you for being so patient! ^_^

[ted id=553]

Tuesday, April 22, 2014

Hobbies! #HAWMC

When I was #healthy, I was a woman of MANY #hobbies: animals, art(acrylics, inks, pastels, oils, watercolors), crafts (wood, metal, cloth, needlepoint) weaving... I loved doing EVERYTHING. I loved learning all the unusual tools and watching a creation move from the theater of my mind into the real world. I've worked with stone, clay, glazes, paper, origami, paper mache... I missed out on working with glass. I love making things and taking a "blah" space and turning into a magical wonderland! I've done small theater, Broadway Shows, singing, danging, tap dancing(!!), debate club, radio (news & DJ), video, film, HTML, typesetting, and I even got to visit East & West German, the year before The Wall fell.

I worked with electronics and electronic circuits, soldering those little electronic bits that sit on the silicon cards in your electronic devices. I had a model electronic train set, model planes, and miniatures. I had a doll house that I made myself, as well as made my own miniatures to furnish it! lol I've built my own computers.

I can sew and have made my own clothing and costuming. I have LARPed both SCA and World of Darkness. I played role playing games like Dungeons & Dragons or GURPS. I play video games and worked at Nintendo of America and Xbox. I've camped overnight for SCA events, attended ZombieSquad events, and been a member of the Camarilla (as well as a coordinator & other official positions in the organization). I play Chess, Backgammon, all sorts of card games, all sorts of games of all types in general!

I've been a model, I've done body painting for charity, and I've volunteered with the ACLU. I've build web sites for fun, made my own computer graphics and animations in Flash and PowerPoint. Yes, PowerPoint, the Microsoft presentation software can be used to make animations, especially technical animations. I use software and hardware in new, exciting, and unintended ways (see the previous sentence). I have been the DJ in a goth club and was a "Club Kid" out dancing 4 nights a week!

I've painted whole walls in murals, and turned my teen-age bedroom into a Faerie Wonderland, based on the famous book by Froud. I've made jewelry, "woven" on a bead loom, and worked with leather arts. I've colorized prints from the Civil War, now hung in the lobbies of banks and offices in downtown St. Louis as fine art. I've been a photographer, and have developed my own film and prints. I started working in a darkroom in grade school.

I cook and create my own recipes. I love combining unusual ingredients to create some brilliant and amazing taste experiences. I've studied philosophy and theology with the Jesuits. I was an Apprentice Shaman and studied Shamanism for 3 years. I was a member of Alcoholics Anonymous for 15 years, and had 7+8 years of sobriety. I study the Big Book and have attended, help run, and participated in Sobriety & Recovery Conventions across the country. I garden and have grown my own flowers, food, and medicines.

I've done road trips through almost all of the states in the Lower 48. I've owned ferrets, dogs, cats, fish, birds, snakes, lizards, and fell in love with an elephant at first sight. I've seen so much wildlife hiking and while camping. I've gone spelunking in caves sailed boats & catamarans. I've water-skied, downhill snow skied (and made it up to double-blue runs). I've swum in the Atlantic and Lake Michigan. I've tooted the horn on a commuter train going from Manhattan to Long Island. I've shot rifles and been hunting. I've cooked over an open flame and on a wood-burning stove (with coal) that was made in 1904.

I've helped make a board game, I've won Magic the Gathering tournaments, I've won beauty contests. I've been in a croquet tournament since I was 8, and I have a scar through my eyebrow from it, but I have yet to get my name on the trophy (my Dad is on there 2 or 3 times). I've made sand castles, drip castles, and sculptures with sand. I've build dams across creeks on which to float motorized model clay boats, that my cousin let me help build.

I studied Icelandic and Norse Literature, including Tolkien, and majored in chemistry all the way through orgo chem. I now study migraines and chronic health issues, and involve myself heavily in health activism.

This is a lot, but I wish I could so so much more. I *AM* going to do more in other ways, but I wish I had the energy to participate in my hobbies like I used to. A lot of these things I mention in the past tense, I have done, because these are things I cannot do anymore. There's a huge sense of loss when you were a person THIS ^^^ active, and THIS excited about participating in life. It hurts to think many of those things I will never do again. There are new things I cannot try in the first place just because of my health, and that too, is painful and frustrating.

Still, I'm glad I was able to do so much for 29 years!

Reflections [LATE] #HAWMC

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

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

It means we're in control.

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

Meaning: We can edit the tape.

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

I'll give you an example.

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

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

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

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

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

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

The reflection is not reality.

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

What do you see?

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

Sunday, April 20, 2014

Travel Time #HAWMC

If I could travel anywhere in the world, where would I go? #India to ride on the back of an elephant like my great-grandmother, and study Buddhism where His Holiness has taken up residence ( I don't even know if that last one is possible, but I'd seek to find out.) However, I was told long ago by he U.S. Navy (since I was married to a Navy man) that with my condition, I should *NEVER* travel outside the country and we would be stationed state-side for the rest of my husband's career. Even the Navy wouldn't let me travel to it's well-provisioned bases world wide. With my health, there was too much of a risk, period. And my dreams of world travel were snuffed out, right then & there.

As it turns out, domestic travel is pretty difficult on my too. I hate planes for two reasons: 1) I am sharing air with how many people? How many of them are sick? How many are sick and don't know it, but are highly contagious? Who is contagious and just doesn't care? I may as well French kiss every one of them, it's the same as taking a long flight. They don't scrub that air they send blasting into your face. That's a blast of virus-filled air soup from the breath of everyone on that plane. And you thought it was the stress of travel that made you sick.... NO! Blame domestic flight regulations & the airlines for that cold.

The other problems for me (and this is how I learned living at a higher elevation would help me), every time the plane went up, my migraine went away. Every time the plane went down, my migraine went to level 10. I can't tell you how many times I've walked on to a flight, and been wheeled away from flight, incapacitated from pain. If I could afford it, I'd travel everywhere by train & ship liner. If I can't open the window for some fresh air, I have no business being there.

I used to LOVE traveling. My father was the son of a diplomat, so he was traveling to a new country every three years. To make it less of a blow on the kids, for the weeks before moving, they would find out all the exciting things they would be able to do in their new home. And my father passed on that tradition to me. We would take long road trips, visit the historical sites, the science & history museums, art & music centers, centers of industry, air show, train shows, boat shows, all sorts of events... It was so much fun to travel with him that the bumps and grinds of being on the road, four people and a dog piled into one car... The bad stuff paled in comparison with all the good stuff, and in pride myself on having visited 40 of the 50 states. Not just touching down in an airport --- actually visiting.

I miss that so much.

Now I only travel for BIG events. The last one was my father's 70th birthday. (Okay, the last one was really the birth of my niece & nephew, but I was persona non grata for that.) Three days at sea level with Spring storms was about enough to cripple me. I was so out of sorts I lost my cell phone and accidentally packed some of my step-mothers clothes thinking they were mine! (We shop at the same places because we both love their styles---she introduced me to a number of them---so it was an easy mistake.) And let's not forget travel is expensive!! I can usually only do it on someone else's dime.

When I think about all the places I won't be able to see, it makes me really sad. I can only be grateful for the people who help document these places for me... The advent of high definition series like EARTH (BBC) have really allowed me to travel the world in the safety of my living room. It's not the same as being there, but it's a solid second place!!

It's an amazing world we live in, and I'm so lucky to have been able to explore it so much in my lifetime. I really wish I had several lifetimes and the health to see it all. That would be truly amazing. But even my own back yard is full of life and wonderment, especially with a garden. Siddhartha was in perfect bliss rowing back and forth every day on the same stretch of river. I could be just as happy doing that too, and in my own way, that's what I do.

It's all good! ^_^

Saturday, April 19, 2014

I Learned The Hard Way #HAWMC

I learned the hard way that people don't like hearing about pain and suffering, especially if it's happening to someone close to them. If they know that it is, they move a safe distance away, so that they don't have to deal with the "continual complaints." Today's blogging challenge is things I've learned the hard way. Being from the school of hard knocks, it's easy to find examples in my life. But I'm learning still how to talk to people without alienating them with the need to vocalize my experience of life. It's a tough lesson.... Most people experience "I lost all my friends" when they get sick. I didn't see it when I was doing it to my own friend with Stage 3 liver cancer. I mean, I knew I was respectfully backing away! But I figured if he wanted something from me, he'd ask. I never thought he might be too preoccupied by his health to ask.

Nancy Etcoff, a noted happiness scientist and TED speaker (Feb 2004, video posted Jun 2009) said something very interesting in her talk, "On the Surprising Science of Happiness," that suicide is not about hopelessness, it's about aloneness. Let me say that one again: suicide is not about hopelessness, it's about aloneness. the reason this concept is so important is that a debilitating chronic illness is by its very nature an isolating condition. You are out in your own private world of suffering. Suffering, of which no one else is aware, nor can they experience what it is you are going through with you. It's just impossible. Chronic illness can isolate you & trap you in a barren world.

I thought people would be able to remember times when they felt like this, and if I told them I was feeling bad, they would rally the troops to make sure I got taken care of. I figured I'd have visitors in my hospital room, cards and flowers and balloons saying "get well soon!" You know, like you see in all those movie sets and on TV. I got none of that. Not even a phone call. I was always alone during my extended stays, and while I had people who took me to the ER (and blessings on every one of them), they were usually so uncomfortable & freaked out that I would end up comforting them instead of the other way around.

The reality surprised the hell out of me. I've never felt more alone in my life.

I learned the hard way that the "law of attraction" is nice way to indulge in childish fantasy. Oh, sure, I can change my energy and have a different effect on other people. But we all know that. Walk around grumpy and you won't be asked how your day is going. Walk around with a smile and a spring in your step and strangers will introduce themselves. But that in no way, shape, or form changes what the Universe, Earth, or even my own body dishes out to me. We all know that there are people out there who have disproportionate good luck compared to the rest of us. These are the people who don't Have to introduce themselves. Alternately, there are the people who have disproportionate bad luck in comparison to others. I was born in a "first world" nation, and in the U.S., so that right there puts me high on the luck scale alone.

The world is not fair and wishing ain't doing. Everyone wants their dreams of happiness and wonder to be fulfilled. Don't worry, no one's ever got all they wanted.

If the world were the way I wanted, I could still dance and go on to carnival rides and spin myself until I lay panting on the grass, dizzy and delighted. If the world were the way I wanted, I could hold a paint brush in my hand and be able to work as long as the flow of creativity wanted. I'd never be interrupted by my own inabilities. If the world were the way I wanted, I could be around children without catching their colds & flus. If the world were the way I wanted, I'd be able to sleep 8-9 hours a night, wake up, and stay awake until I decided to go to bed, never napping unless I made the conscious decision to nap (and actually lying down to do so). If the world were the way I wanted, animals would be respected at the level of human. If the world were the way I wanted, no child would feel unloved or unsafe.

If the world were the way I wanted, spell-check would stop insisting on turning all my commas into exclamation points. No one is that excited, ever...

This would would shake us like a cold if she wanted to. That she doesn't is a continued miracle. The universe is not a hospitable place for you and me. Nor was it meant to be.... We are so small, and so tiny, all this "cosmic voodoo" is cosmic hogwash.

But isn't that kind of a relief? If things were supposed to be easy, how many of us would be falling short right about now? If life is supposed to be difficult, and supposed to be *THIS* difficult, then it's nothing that I need feel responsible for creating or "attracting." That lesson, at least, was totally worth learning the hard way.

Friday, April 18, 2014

5 Challenges, 5 Victories #HAWMC

The 5 biggest challenges of my health are 1) crippling pain that is difficult to manage 2) overwhelming fatigue that cannot be medicated 3) mood swings that cannot be medicated (the science just isn't there yet), 4) the stigma that come from a disability 5) the misunderstandings when that disability is invisible.

My 5 victories that keep me going: 1) the right pain medication that allows me to control my pain 65-85% of the time, 2) medication for my chronic nausea so I can take my pills on a regular schedule, 3) friends that inspire me to new creative heights 4) an audience & followers that support so much of what I do (really I wouldn't be here without you), and 5) the continued love I get for and from my writing.

My ability to share my struggle with you, raw and often unfiltered, has been a true blessing. The outpouring of response has kept me going through dark times. When I've been able to help someone, then that means my suffering wasn't for nothing. If I've been able to make it real or give it voice I'm a way no one else has been able to, that's such an amazing feeling: both awesome and humbling all at once. Who am I to say what it's like for anyone else? But you reply that my story has been your story too, and we've been able to connect in that way.

I do hope I've been able to share your story of what it's like and what we go through. I hope that I've been able to give you a laugh, or make you smile, or let you in on some tidbit you didn't know before. It makes my day whenever I can do that, and I certainly call that success. You are my success. A blog yearns to be read, so that you're here is a victory for me. Every link from outside traffic sources sends my heart aflutter. When a super-spreader finds a post an makes is go viral? Those days are like Christmas.

It was as though I missed Christmas last Summer - I got over 6,000 unique visitors in both months. I wish I knew how to read blogger stats better, so I could properly show my appreciation. As it is, all I can do is bask in the mystery and the love. My tragedies have been the foundation on which I have built my victories. There's no better way go!

Thank you for helping me accomplish that.

Thursday, April 17, 2014

TV Matchup #HAWMC

Think of a TV show that compares to your life. What is it? Who would you be, who would your friends and family be? I'm horrible at these because I don't watch enough TV. I've been compared to Grace from Will and Grace (my roomie Mike was Will). And friends in Seattle all said I reminded them of Ed from Northern Exposure (rather than he reminded them of me, specifically, they always noted for some reason! Lol) But otherwise, I don't watch TV enough to know to write this blog post!

So if you'll excuse me, I think I'm gonna pass on today, and pick up with #HAWMC tomorrow! (Maybe go watch some TV! Lol)

Wednesday, April 16, 2014

Wordless Wednesday #HAWMC

This picture comes from the #invisible #disabilities banquet from last year ( I didn't know it at the time, but Sherri, wife of founder Wayne Connell, is the one who came up with the term "Invisible Illness" (and they have the documents to prove it too!) and I was lucky enough to be seated with Sherri's mom at the banquet! It was a marvelous evening, and I was so delighted to be able to attend.

It amazes me how many people are involved in this community who you would never think of as sick. Take for example one of the 2013 Award recipients: Kevin Sorbo, or as you probably knew him, TV's Hercules.that's right, the guy who played the strongest hero-of-old has a chronic illness, and one that would qualify him for disability, based on his descriptions of how they had to manage symptoms on the set. (Yes, he was ill during the shooting of that series... You didn't realize he really was Hercules, but for totally different reasons!)

And that's the thing, most of my employers were willing to work around my health issues. I was sick a lot longer than my disability date tells. For the year prior, I was working through migraines and sudden weight loss that left me too dizzy to climb stairs. I wasn't coming in to work on a set schedule, but then my boss was showing up later than me! So it was all good... Until my disease crossed the line and I couldn't even work under those conditions.

If I'm honest, much of my anxiety and discomfort comes from the fact that my disease is invisible. On the one hand, it's a plain advantage because I don't get judged as less capable just by the way I look. On the down side, the expectation is that I am just as capable as anyone else, and I'm not. But I have no way of proving that to anyone else.

So to me, I've already pissed you off... You just don't know it yet, and I can't handle knowing I'm eventually going to let you down bad enough to warrant you yelling and/or judging me as unwanted (even if that never actually happens). That anticipation right there makes me neurotic and in "people-pleasing" mode, that all of the therapy I've been through has been wasted money. And they don't made SSRI that strong! Lol

I have to thank, because it's through their continued work that I am able to be less neurotic about my disease. Because they are spreading awareness of what it means to look good, and still be chronically ill. They've worked with the government, they've done outreach and awareness campaigns... They've really done a tremendous amount for our community. Go pick up one of their glow-in-the-dark (I *love* that!) awareness bands and the booklet: But you LOOK Good! I believe purchases are tax deductible (in the States).

Thank you so much to Wayne, Sherri, and their families for their dedication to this cause!

*(Edited to add:) To be fair, having to "prove" I'm worthy of being called "sick" is directly related to a trauma I had to endure --- I did not have adequate pain contol for 3 of the 4.5 years that I had my migraine. So there is psychological damage there... I think many of us with invisible disabilities can relate to that in some sense. I'm not sure what to do about it though, so I'm open to suggestion...

Tuesday, April 15, 2014

Tag line #HAWMC

Today's challenge: come up with a tag line, & make it catchy. The name speaks for itself: Make This Look Awesome. I chose that name because it was a snappy answer to the frequent "you don't look that sick!" Why thank you! I do make this look awesome don't I? Because of course, we can't judge a person's problems just by looking at them. We have these things called diagnostic tests because we know you can't diagnose just by looking. Oh sure, there are a lot of obvious and apparent causes, but most of what's going on with us humans is going on inside in a world hidden from view. Thank goodness too! I don't want to watch my stomach digest food. It was pretty going into my mouth. That's how I'll remember it!

Make this look awesome... Like the Missouri great, Mark Twain wrote, if you can make it seem like it's better than the best, then folks will pay money to join in.

The truth is, when symptoms are managed, people with a chronic illness are no less happy than healthy people, it's a scientific fact. Which is good news, because chronic illness is unavoidable as we grow older. 96% of seniors have one chronic illness! But there's one key little word in that study that makes all the difference in quality of life: managed. If the symptoms are not managed... Life, the experience of it and participation in it, can be a living hell.

Make this look awesome! It's a battle-cry in defiance of that hell. Oh, sure, we may get sucked down in it, but we fight, and we don't let hell defeat us! Because no matter what pain my disease decides to put me through, if I can just stick the landing, I'm good. We all go through hell, and the world throws the most miserable of circumstances at us. The pain can be brutal, soul-stealing, and terrifying... But ride it through to the other side and there we are: triumphant, radiant, awesome!

It's been 12 years since this whole journey began. I didn't want to be a part of this world. I fought against joining its ranks. But since I'm here, I'll do everything I can to empower my fellow survivors. It's especially difficult for those who once knew what it was like to be on top of there game, able to manage life's difficulties with ease. If I were my mother, I'd have two daughters and three mortgages under my belt by now. My oldest would be 12 in her first year of Junior High.

As it is on my worst days, I feel no better than a 12-year-old, over-dramatic, and desperate for attention! If I were only short enough, I'd dress as a Japanese Goth Lolita. Would you like to hear some of my poetry? On my good days, I'm still that powerful, go-getting woman, with all the skills and wisdom that decades provide. I don't have the Three M's (mortgage, marriage, mommy), but that also means I have the freedom to do whatever I want with my life, and I am by no means done.

Make this look awesome! It's my mantra to live up to, my brand by which I must stand, and how I remember each day to try my best, regardless of what I might face... Make this look awesome! Because if there's no one else, I at least am watching me, and I want to treat myself with the respect I deserve.

Make this look awesome... Putting a positive spin on chronic illness.

What's yours?

Monday, April 14, 2014

Well that's just Crazy!! #HAWMC

What's the craziest thing you've heard about your disease? That's easy: "I'm afraid if I sleep with you, I'll catch your migraines." Yes! The award goes to my ex-husband in the second year of our marriage. It didn't last much longer than that.

When I heard it, I literally had to repeat it back to him. "Let me get this straight..." (If I start a sentence like that, it's over.) "You're afraid that if you sleep" (I made a gesture to my pelvis) "with me" (once more for emphasis) "you're going to catch my migraines??" (Hands on my head so even a child could understand...) And he, with all the innocent earnestness he could muster, said:


As if he's just admitted to shooting my dog in a hunting accident.

I was so shocked it was just a beat, but the silence between that and what happened next was also like an eternity. He actually wanted me to believe that. Regardless of whether or not he believed it (which I found highly unlikely), he wanted me to believe it! otherwise he wouldn't have said it. In that pause, all his hopes were riding on me believing that.

I burst out laughing.

He was clearly crushed, and hung his head.

I laughed even harder.

Between breaths, I was saying it again. "If you sleep" *laughter* *gasp* "with me" *laughter**gasp* "catch my migraines??" Ahahahahaha! "You're kidding me right?" *laughgasp* "It doesn't reach that far!!!" Ahahahahahaha!

He rolled over. I left the room.

That was his reason for not sleeping with me for almost a year.

The following month, I filed for divorce.

Favorite Things #HAWMC [LATE]

Today is my list of favorite things... And I've had a surprising amount of difficulty writing this one today. You would this this one would be simple--- everyone has a list of favorite things, right? Or at least everyone will have fun thinking about what are the things that are favorite to them, right? But you see, it's not so much like my mind is a dark alley and you're going to get mugged, more like my mind is that bad part of town where they may not find your body.

I know that someday, big wind come, take this all away. That was the wisdom of an old Hawaiian woman after surviving a horrible hurricane that basically took everything she had, except her life. But she always had a smile, always was quick to laugh. That her life had been shredded was no big deal to her. When asked what her secret was, she answered, Someday, Big Wind come... Take this All away.

Ya know how I finally got pain control? I had spend years going through expensive elaborate nerve conduction tests, MRIs, PET scans, CT scans, bionic devices, the works! All to try and figure out why I was in so much pain. I finally got the right diagnosis and the right medication from a simple pin. A PIN!! You mean after all those tests, all those years spent suffering and on disability, all my problems are solved by a pin?!

I was so angry, SO angry to have it turn out to be that simple. But you can't stay angry once you've got pain control because you're free. It's not worth it to stay angry because this is what you've been waiting for. You've wanted to be able to go all this time, so GO! And I went...

But then this weird fatigue started up. Fatigue immune to caffeine in all it's many forms, fatigue immune to sleep. My dentist commented on my teeth, and I was hospitalized for low potassium, when that's not normal for adrenal disease. Run the tests with an endocrinologist and my GFR came back showing Stage 3a Chronic Kidney Disease. Well, now... That explains the fatigue & the rest!

Now I'm haunted by all the what-ifs... What if they had medicated me sooner. What if I'd been able to work these past 6 years, instead of crippled by symptoms? What if I never had to leave Seattle?

I have to remember: some day big wind come, take it all away. This world is not about what we get to keep. Because we don't get to keep a thing in the end. Do I love my things? Sure! As much if not more than the day I got them. I'm sentimental like that. But someday, big wind come....

I cannot let my love turn into endless grief. I cannot let my anger keep me in the past. When I am free, I must move on as fast as I can. What-ifs never help me. Getting up and getting over it does.

My favorite things? Whatever is currently with me. Nothing more, nothing less. :)

Saturday, April 12, 2014

When You Don't Get What You Need #HAWMC

How can I #ask for what I #want, when I can't get what I #need? That question hit me like a psychological bomb this afternoon. Mornings for me are generally difficult and full of negative thoughts, and I've learned to just ignore my brain until my morning meds have kicked in. That's just safer for everyone. But this though hit me right around noon, long after my better living through chemistry kicked in. This was a thought explosion that required further investigation. Since today is Blogger's Choice, I'm choosing this: How can I ask for what I want, when I can't get what I need?"

Sounds like the line from a Country-Western song about heartache and loss... And to be fair, it is about heartache and loss. Add a line before it about the season, and it becomes a Japanese Haiku: Morning sun turns frost into dew. How can I ask for what I want, When I can't get what I need? It's a question that's more Goth than Amanda Palmer in a Death costume. It just drips with teen-aged angst and insecurity. Only it's coming out of my head at fourty because my friend invited me to sushi.

The thoughs went like this. Oh, cool, sushi! I could totally be frugal and have something delicious. I'd never think of doing this on my own, what a delightful idea! I should think of other frugal ways to spend time with my friends, because I don't invite them over, and I really should. We had such fun when Mike had everyone come over for drinks. I should be more spontaneous like that. I know I used to be... I wonder ...

Here's where I should have stopped. It's as though I were driving on a mountain road, and suddenly a darkness descended. I could see the turn in the road, but it was too late, the thought had too much momentum, I couldn't turn away from the idea that sprung up next. I swerved to avoid it, but to no avail! Over the cliff I went...

I wonder why I don't do that anymore. (Turn now!) I used to do that all the time when I was younger. (Look out! Swerve to miss it!) I wonder why I lost my spontaneousness? (No good! You're over-correcting!) It wouldn't be too hard to clean this place up & invite folks over. (Too late...) But I'm in too much pain to even make lunch. (We told you so...) How can I ask for what I want, when I can't get what I need? Boom.

And suddenly it all made sense why it was so difficult to take time out to care for myself, or to suggest fun activities, or invite people over. It's not that I don't want to do those things, I do! It's not that I don't have a circle of friends to ask, I do! But there's this awful noise coming off this hole, see... And I'm trying to fill up the hole so that we can have some peace & quiet in here again, but the damn thing won't. fill. up! It's maddening... Hey, can you give me a hand? Grab that shovel...

For all the time I spend lost in thought, there are lots of things I would just rather not think about - what I'm going to wear (if I could wear a uniform and just not have to think about matching slacks & blouses), what I'm going to eat (I can seriously eat the same 3 meals for months...I'm doing it right now, in fact), how to wear my hair (out of my face and off my skin - military cut for a girl? Right here). These things, to me, are things that take time away from doing. I'd much rather do stuff. But so much of my time is spent managing this symptom or that flare, that when I get to times when nothing is going wrong---my window for fun---I usually just spend it exhausted, trying to recover from shoveling remedies into that giant hole of need.

It made me realize, not only do I believe I can't ask for the things I want in life, but I'm also VERY angry at my body. Unfortunately, yelling at it means I'm yelling at me. My body, as much as I would like to think my consciousness is separate, is an integral part of who I am. My body *is* doing the best it can. It's just broken! It can't help that it's broken. And I need to forgive it more. Poor thing, it's gone through so much and been pushed so hard when it wasn't getting all it's done amazingly well to operate under the deficiencies I've dealt with. It's supported my mind, and my ability to see myself through some hairy situations. It deserves more credit that I've given it. And, boy, does it look good for 40!

So step one: Stop getting angry at my body when it's not doing what I want.
Step two: Forgive my body for not allowing me what I want.
Step three: Take care of my body's needs with gratitude.
Step four: Find frugal ways to have more fun with my friends. (I *do* deserve it, and if I'm careful, it *can* be good for me.
Step five: Continue my work to better my health & function.

Even if not all my needs are met, I can have what I want, if I'm clever & careful. The good news? I'm clever. The bad news? I'm also impulsive. I can still be okay with that combination, as long as don't let my "failed attempts" drag me down. I think that can help me get some of my mojo back. But my big fear is always spoiling everyone's time with my health problems. It's happened many times before, and I know it can happen again, suddenly and without warning. I think I can he careful enough to show myself it is possible to have what I want. Time will tell.

I'll keep you posted! ;)

Date Night #HAWMC

I'm supposed to post on #dating & #chronic #illness, but to be honest, I have no clue! My marriage and divorce were both largely due to my chronic illness, and I haven't been able to date since. I didn't really know how in the first place, and now I'm sure I'm clueless. So you don't want my advice! LOL

Thursday, April 10, 2014

And the Winner is... #HAWMC

Today, Ladies and Gentleman, is a prodigious day. I have, against the better judgement of my peers and the wisdoms of the ages, been awarded winner! Ed, tell me what I've won! No seriously, what have I won, because as far as I knew I was only in the running for "crankiest neighbor" and "worst friend ever..."! At least, that's how my acceptance speach would start if I were writing it tomorrow. Honestly, though, I don't like fantasizing about such things. Not because of fear I'll jinx it, though that is part of it... No, my problem is when I get to feeling like this, it's really difficult for me to imagine a time when I'll feel good again. I can't imagine being happy like that right now. I know I was happy on Sunday, I remember that fact. But I can't recall how it felt Right now, I hurt, and that's miserable and scary. Miserable, because I can remember all the times I've felt like crap right now... That's easy to imagine! And scary, because some of this pain is new and new is never good.

According to my counselor, this difficulty in recalling the good times when we feel bad is totally normal. It's a survival mechanism because obviously the last time we felt like this we survived, so let's make sure we remember all those times again so we can get through this next round of it, your brain would say, if it could talk objectively about its own processes. It doesn't matter that all those memories are nightmares, we obviously knew what we were doing, so let's make sure that's all we can think about until we feel better. Well, don't you think it might help if I could think of feeling better so I could feel better? I would ask, if I could talk to my brain... Nah! It would retort, you don't really want to think of something else. You only just just learned how in the last 50,000 years or so. That "feeling" part? That's a much older part of your brain, so it wins all arguments, even illogical ones.

Great... I even lose arguments with myself!

Seriously though, it is difficult to imagine anything good happening to me when I'm in the middle of hosting a pain parade through my cranium. I know I'd be able to play along with today's writing assignment if I weren't praying for my own swift demise (just make it STOP!). It would actually be a lot of fun to imagine just how'd I'd earned something like that. I could really challenge myself to say that I could only win based on something that I am NOT know for at all right now, and see if that helps me imagine new and fun things I could try in the future. The very process of figuring all that out would make me hopeful under normal circumstances.

Under chronic-illness circumstances, all it does is make me ask myself why I screwed up that one time I was nominated, and why does my disease have to steal everything positive from my life? All I had to do was send in an email and a URL. How hard is that? Apparently very... Who knew? But that's the kind of awful stuff my brain will lock onto when I feel physically bad. As if feeling physically like crap isn't enough, I also have to convince myself that I am crap, and this is probably all my fault just because it's happening to me. Of course I have my own brain to thank for this line of thinking, which really makes me wonder if my whole body isn't out to get me.

And the winner for Most Effective Use of Self-Sabotage goes to.... Pam's Body!

Thank you everyone! Good evening, and thank you for coming out. It been such a privilege to work with such an amazing group of organs. Skin, you're always overlooked even though you're the largest organ. You know the levels of pain this project required could not have been possible without you. Nervous System, always the life of the party, your antics really put us over the top this year. Your lightning fast ability to produce special effects is so amazing, it stopped me in my tracks! Endocrine System, your vast hormonal depths are still a mystery in many ways. Your contributions, partnering up with the brain for pituitary disease is legendary, we couldn't have done all this without you! Finally, Brain.... Brain... What can I say? You are the brains of this organization! Seriously, though, your ability to cause anguish is without par. Even the kidney stones are jealous, can you believe it? Do you know how hard it is to impress a stone? And beyond that, you added a deep psychological anguish that showed your true range as an actor. We were on the edge of our seats for, "I am Worthless Because I'm Worth Less," and who can forget how you opened our hearts with, "I'm Single & Deserve It"? My favorite is still, "You Hurt Because God Hates You," but I'm sentimental like that. Thank you again, everyone! As Pam's Body, I cannot tell you how much this award means to me!

Now that I could totally see!

Wednesday, April 9, 2014

Wordless Wednesday 2 #HAWMC

I can't do it. I'm a writer for goodness sake. I write! So these "wordless Wednesday" assignments are knocking me for a loop. I'd rather do the 1,000 words. You want to start counting?

I felt so helpless today. I think that's one of the most frightening aspects of many chronic diseases: the total lack of control over the whole situation. Now, I know there are some people who have been able to rise up like fierce warriors and meet there disease head-on, and they're able to wrestle their disease, through lifestyle change, whatever, back into a corner where it behaves itself. Not so with my disease, and not so with my friend, who is going through such awful pain she can't keep food down.

I've been there--- in a world where there is so much pain, there is only obedience to the symptoms and praying until is passes or until you're so exhausted even the pain can't keep you awake. It's horrific what some people must endure, and our helplessness makes it worse. I want to think of myself as a competent, capable woman. But that's difficult to do when symptoms have us so at their mercy, we are rendered as helpless as infants. That's not a reinforcement that helps a person feel good about themselves, physically or psychologically.

What is fascinating to me is how much different of a person I might be, if I wasn't constantly made to second guess myself all the time. I saw it in another friend last night. He was in a bad mood and I asked if I could let him go and he said yes & apologized pre-emptively, something that I do all the time, because I am so sure that I am disappointing others with my shortcomings. But the truth was, my leaving had nothing to do with him... and suddenly I saw myself and every time I'd apologized ahead of time. Suddenly what my friends had been telling me became clear:

1. My limitations don't matter. We can find a way to make it work.
All humans have limits. We're used to working within limits all the time. We have lightbulbs for when it gets too dark to see, we have cars for hauling us around at speeds that are not natural for us, and we are communicating across the world in near-real time. Why are limitations something to be upset about, even if mine are different & unusual? Being human is all about limits.

2. When I apologize ahead of time, I have forced the situation to be something to be sorry about, when it may all be just fine.
Who am I to decide this is bad? I haven't wronged anyone, so what am I apologizing for, me & my nature? Well, that's a quick road to feeling bad about myself all the time.

3. I'm not unique in screwing up, whether it's from symptoms or circumstances. Just because I feel awful and have awful things happening to me doesn't mean I am awful. Feelings are not facts.

4. No one likes to see their friends suffer. But that doesn't mean we know what to say or do about it, especially if we can't understand what they're going through. It doesn't feel good to feel powerless to help... But people should know that when we're in suffering like that, we know our friends can't really help. Just saying that you hope we feel better soon or you hope the symptoms ease up enough so we can smile again.... Sentiments like this can mean the world. It reminds us there are folks rooting for us to get through, waiting for us on the other side of the suffering.

5. Being on the losing end of a battle with symptoms and simple tasks like holding a spatula can make me forget, quite easily, about my remaining strengths and skills. It's difficult to believe I'm still capable of greatness when the greatest thing I did today was lose in a most spectacular fashion... That's why it's so important to have those reminders, and get those reminders from friends & family, about the things we still can do well, and are still appreciated for, disease or no.

I should go now, as I keep nodding off....

Tuesday, April 8, 2014

Working & Chronic Illness #HAWMC

Today's challenge: Off to #work! What #advice would you give to those on the job search? How do you juggle your job and a chronic illness? Any tips for the interview? #HAWMC

First, let me mention that I am still learning about how to properly do this, so I may have some details wrong. Feel free to correct me in the comments & I'll update here.

Work and Chronic Illness
First, let's clarify that work with a chronic illness is different than work and disability, mainly because of the rules and regulations having to do with disability itself. Either way, trying to work while ill all the time is difficult at best. We must remember that he rules of rest and relaxation don't apply to us like they do for other people. We must take extra time and precaution to guard our sleep and down time. It's not that we need it to feel better (which we do), it's that we require it to keep from making ourselves worse. We're already sick! Most people when they're sick have the luxury of saying, "if I rest up, I'll feel better..." If we rest up, we don't feel any better, but we hopefully don't feel worse. It's not always that simple of an equation (rest isn't guarenteed to be restful).

DO NOT TRY TO TOUGH THINGS OUT! I know this sounds silly as working while chronically ill is already toughing things out. What I mean is, if you're chronically ill and working, don't just ignore your symptoms thinking they'll go away. Symptoms are our bodies messengers, alerting us to what is going on within us. The message isn't always clear, and it isn't always proportional to what's going on (small symptoms can mean big problems and big symptoms can mean small problems). Regardless, they're all we've got. And if you're already driving a car with bad breaks, you don't try to race around like Evil Keneval. Be careful, and be in close communication with your doctor when your body is communicating to you. Your doctor is your pit crew to keep you in the races. If you let them know that staying fit for work is your goal, they will happily work with you to help make you a success.

Work and Disability
There are two categories in working while disabled that we first need to address: is your disability VISIBLE or is your disability INVISIBLE? This makes a huge difference, especially if an employer must pay to have your disability accommodated for you to be able to work for them. I know NOTHING about dealing with a visable disability. However, there are many non-profit and government agencies who are willing to help. You can find those organizations by searching through Social security's Ticket To Work website, and you don't even have to be on Social Security Disability to receive help. Many of these organizations can help you apply for disability if need be. I just know the Ticket To Work search engine is a good place to start looking!

For the majority of us (over 90%!!), our disability will be invisible, meaning no one can tell we're sick by looking at us. Oh, we may have loads of strange behaviors that give us away, but for the most part, you'd never know we're sick. There are advantages and disadvantages to this. The biggest advantage is your employer never has to know. Most places in the United States are called "At Will" states, meaning that even given anti-discrimination laws for disability, you can be fired or let go from a company for almost any reason. You can try to battle it in court, but don't count on it. The working world's philosophy is: find another job.

The general rule is: Don't Ask, Don't Tell... Which can be frightening because it can seem like it means carrying around a secret. Here's how I like to think of it-- according to statistics, half of all adults live with a chronic illness! You're not alone or even a minority! So this kind of information---that we live with a chronic illness---falls into the Big, Golden Box of None of Their Business. The bottom line is, if you can manage your symptoms, you should be fine. If your symptoms are unmanaged and interfere with your ability to work, talk to your doctor. If your symptoms are as managed as they get, but they're still giving you trouble, talk to your local disability organization as mentioned above. (I'm going to a seminar later this month and will have more to report then, so watch for part 2 of this post!)

Working and Benefits
This information is for SSDI only. If you get one check a month for disability from Social Security, that's SSDI. If you get two checks, one is SSDI and the other is SSI. The rules for SSI are not covered here.

If this is your first time attempting to work since becoming disabled, there's good news. Social Security will allow you to earn as much money as you like and still receive benefits in what's known as a Trial Work Period, for up to nine months over five years (the nine months do not need to be consecutive). So if I work three months in 2010, two months in 2011, and four months total in 2013, I have "used up" my trial work period, and the rules for earning money change. This is, of course, assuming the money I'm earning is considered "Substantial Gainful Activity." That means one of two things: either I'm working the hours and duties that would be considered full time employment at minimum wage, or I'm earning more than $1070/month as a non-blind person (the rules for sight-disabled persons are different too).

IMPORTANT!!! Be sure to take out EXTRA money from your paycheck for TAXES!! Most people don't have to pay taxes while on SSDI, but the combined income of your SSDI and your Trial Work income will likely bump you up in a tax bracket, meaning you will OWE on your taxes! When you fill out your W-2, make sure you have them take out extra money from each paycheck to cover your disability income too. YMMV! How much you need to take out will depend on how much you make, but it can be as high as $133/week that you'll need to take out in addition to normal taxes. This is especially important if you find you cannot work after the Trial Work Period. You may find yourself trying to pay an employed person's taxes on a disabled person's income, and that's not pretty!!

There are a whole bunch of rules for what happens after your Trial Work Period is over, so I encourage you to read Social Security's Red Book and attend one of the many seminars available through VocRehab and other organizations on working while disabled. But basically it boils down to this--- you cannot charge less money for the work you do, if someone who was healthy would be paid more: you must "charge" equal pay for equal work. You cannot earn more than $1070/month if you want to keep receiving your SSDI check. So take $1070 and divide that by however much you made hourly during your Trial Work Period, and that's the maximum hours you can work per month and not lose your SSDI.

For me, that number is too small to make me employable except by someone who understood exactly why I have that limitation---which means revealing I'm on disability. This is why I'm currently working with one of these organizations to see what I can do. Because I don't make enough money to afford rent, foot and medicine, and rents have jumped here so fast, it's not worth it to downsize to a smaller place. I'd be paying more! So I have got to figure out some way to accommodate my uncontrollable symptoms while making enough money to afford my living situation, while not making so much that I lose my benefits (because I'm not getting healthier!).

I looked into the PASS program, and that's a plan that must be PRE-approved by Social Security, and it's a plan to come off of benefits ENTIRELY. I'm not ready to let go of my security blanket... Not while they keep diagnosing me with new stuff! For other folks, know that it's tough to get approval.

That's all for now... Look for Part 2 in a few weeks!

Monday, April 7, 2014

Why I Write #HAWMC

I started writing three years ago because I was stuck. I knew that in order to learn how to live with my chronic illness, I was going to have to make peace with it. But in order to make peace with it, I would have to learn how to see the positives in what was happening to me. I tried searching around on the web, and didn't have much luck. I was confronted by either sugar-coated nonsense or told me how bad it was, but then didn't tell me what I could do about it. I don't think many people knew what to do about it. No one I knew had a clue what I should do besides find some miraculous way to get better. Barring that, they had no thoughts on how I should get through in the meantime.

My mother always taught me that if I wanted to learn how to do something, I should try teaching it to someone else. That had always worked for me in the past, so I decided to start writing on what I would say to someone who was just starting on this journey of chronic illness, and what I wish I'd been told early on. That turned into how I could think about my illness and my situation in a positive light. That got me thinking about how everyone always says, "I know I don't look sick, but I am!" I thought, why not turn that around? "Of course I don't look sick. I make chronic illness look awesome!" And that's where I got the name of the blog...

Since then I've been doing what I can to educate folks, especially about some of the things other sites ignore, or don't feel comfortable tackling. I used to think that people weren't answering my question about how to cope with chronic illness because they didn't want to think about having a chronic illness. But that's not it at all. They can't even wrap their heads around "chronic" and "illness" to meet you there. They understand the flu, or possible a broken bone. But they can't understand every day without end. I knew I couldn't, even when I did have a chronic injury that lasted 3 years. But there was still a prospect of getting better when that happened. We just didn't know how.

It's different when your told, "you don't get better from this, you just get it. It may get worse. It may go into remission. We don't know, but it will never not be with you." Normal folks don't know what that means, or what problems it causes, so try as they might, they just can't brainstorm answers well. They may want to help, but don't want to admit they can't even grasp your reality. It's not their fault. They'd help if they understood what we were talking about.

And that's why I kept writing. After figuring all this out I realized that the only way to help others like me is to help others like me.... This is a wonderfully supportive community and we're helping to educate one another as well as the professionals. A lot of what they've thought about trauma, brain studies are now changing the science on (to answers that were intuitive to folks like you and me). I keep writing to help all of us, to spread awareness, give support, and hopefully provide some insights here and there.

I'm proud to help.

Migraine and Social Security Disability

For the first time since 1985 (29 years), the SSA is currently revising neurological disorders listed in the Blue Book. This provides the chance to change the rules on how disability is determined for people with migraine disorders. Currently there are no rules. Instead, a person is judged against the disability standards used for seizures. But that's like saying, "we're going to pay your insurance claim based on how badly your neighbor's house burnt down." Migraine is a different disease, treated far differently than seizure disorders. The rules for disability should also be separate.

Now is the perfect opportunity to raise our voices as one and insist they make this highly necessary change.

Please take action by submitting a comment to the SSA at this address:

You must take action by Monday, April 28, 2014, for your comments to be taken into consideration in decision making about revision of the neurological disorders portion of the Blue Book.

If you don't know what to say, feel free to use this below:

I would like to share my support for listing migraine and especially chronic migraine as its own disorder in the Blue Book. Chronic migraine has symptoms and limitations that make it on its own a fearsome disease. We can help ease the burden of those who suffer from it by giving them their own listing, instead of a lengthy approval process where they must "prove" they're as sick as someone else with a completely different disease. This helps no one, and costs the government money in the appeals process. Please consider changing the listing for migraine & chronic migraines.

Thank you for raising your voice!

Sunday, April 6, 2014

Sunday Dinner #HAWMC

Sunday Dinner. Who are 5 people you’d love to have dinner with (living or deceased) and why? Don’t worry we won’t be offended if you don’t choose those at WEGO Health #HAWMC If you give me the option of Zombie guests, of course I'm going to dine with the dead! People might be surprised by my choices, however...

First, I must invite my fellow statesman, Samuel Clemens, aka, Mark Twain. He seems like he could carry a dinner party by himself, but we don't want to leave him lacking for peer support. Next, I would add Marie Curie, because she was such a force in Physics and Chemistry in an era dominated by men. Following her, I'd go with Siddhartha and Lao Tzu, because, why not? And finally, Cleopatra, one, just to see what she really looked like, and two, if we want to talk about a woman who held her own during a time of men, she's tops!

So I have a writer, a scientist, two spiritual pinnacles, and a stunningly beautiful female ruler from an age known as male-dominated. That sounds like an amazingly cool conversation. Mark/Sam would delight us with interesting topics to discuss, whether it be about the stars in the sky or fish in the stream, which both Sid and Tzu (say that 5 times fast) would relate to some great, higher awareness. Cleopatra would say something that would charm all the men, with enough wit to relate it to the discussion at hand, and Marie would explain how the cosmic and the microcosmic all interconnect scientifically. It would be a fantastic dinner. Just get them together, at watch the conversation go!

Those would be my five...

My apologies for not being able to hot-link the URL up there. Technical difficulties, migraine difficulties! Mia culpa! Lol

Saturday, April 5, 2014

Super-Power Day #HAWMC

I'm supposed to tell what superpower I would have, and what I would do with it if I did. Rather than scare you all with my evil genius desires, I though I should tell you of the superpower I have been blessed with: I can sleep!! I can fall asleep in the middle of you talking to me. I can fall asleep in the middle of me talking to you. I fall asleep sitting up, standing up, and walking. Oh, and I sleep walk/talk/and type too... That can make for some awkward emails, let me tell you! What's even worse is I often dream that I've woken myself up (when I haven't) and then I dream the next part of my day and what I do (only I'm asleep and I don't), then I wake up and realize I have to do that all over again, only for real this time.

Sometimes, I fall asleep mid-motion, freeze in place as I sleep, wake up and move a few inches, fall back asleep and freeze, like some wind-up doll at the end of its spring, or someone trapped in some strange space-time anomaly where everything is slow motion for me, and regular speed for the rest of the world.

Thankfully, driving a car does not put me in this state. It seems to happen either when I'm seated and stationary, or after I've gone to bed at night. This can be a real pain (literally!) when trying to go to the bathroom in the middle of the night. I cannot tell you how many times I've woken up on the toilet and both my legs are asleep because I sat there too long. (I now understand why people by cushioned toilet seats!!)

I can drink a Red Bull like other people do shots of alcohol and fall asleep. I can sleep (and I have) through a level 7 migraine, however, I also dream I have a migraine, and feel the pain in my dreams! I have answered the phone and carried on conversations in my sleep. Sometimes they made sense and I helped people. Sometimes it was jibberish and I amused them... "No, no... The elephants go on the pink squares and the hippos have apple juice." Wait, Pam, what did you say? "We have to close our eyes to keep the soda cans from escaping otherwise we can't Paris." Are you asleep? "Lightbulbs." You're asleep. I'll talk to you tomorrow, bye. "Okay, bye!" (She said the freakiest part was that I say goodbye like a normal, awake person! Lol)

So my superpower is LIVING IN MY SLEEP! Which makes things very strange and complicated, especially when I can remember if I just dreamed taking my medication for the day, or did I actually get up and take my medication for the day? I'm going to have to back to one of those reminder pill cases at this rate! Pill counting gets old fast.

Yeah, it's not as cool as a real super power, but I had to vent ;)

Theme Song #HAWMC [LATE]

"Don't give up, You Only Get What You Give... by the New Radicals has been my theme song for the longest time. (video: It's a great, lift-me-up tune with positive reinforcement: If I want great things to happen, I've got to put great effort into the project. If I want if to be funny, if I want it to be me, I have to be willing to out those things out there for others to works with. If I want it to be wonderful and full of whimsy, I need to bring that to the table. If I want it to soothe, I need to be soothing. If I want to learn, I need to teach. If I want to teach, I need to learn. The rule is: Don't give up-- forget the losses-- if you want, you must be willing to give of yourself.

I used to play this song whenever I was feeling down to remind myself why I need to pick myself back up again. As long as I keep going, and keep trying, and keep improving what I do... As long as I practice and remain teachable, and just keep at my goal, I will get back the effort I put in. This does not mean I have to be the loudest voice in the room. Rather, it's that if I want something, I've got to be willing to put in the work. I've got to be willing to take small steps forward over a long period of time. There is no "get rich quick" scheme, no easy launch to success.

But the fun side is, I get it back! When I put in the hard work, I get back the results of that work. Even if the results right now aren't what I want, it's a start, and I can build from there. If I want to build a mountain! I need to expect a mountain of effort, and I'm not Hercules, so that's either going to take time, help, and probably both! Lol

I know we can do great things if we put our minds to it. This blog started with a single post and an idea. I'm actually blown away by what it's become and the people I've reached, and who have reached back to me. There is such an amazing community out there for those of us who must live with a chronic illness. I feel so fortunate to have you all (and all the friends & family too!) as a part of my life! "You've got a reason to live!"

I used to wonder how I would fit in if I no longer had work as a part of my life. I knew I didn't want to just waste away reading the Internet or staring at the TV. So I made my time on the Internet productive, and kept writing and honing my professional skills in essays, even though I wasn't paid for it. Later that blossomed into the idea of the blog, and now I've turned what was a detriment into a positive force in my life! Oh sure, I still suffer the bad days, but bad day or good, it's all material I can use to help myself and all of you!

Very early in my illness I saw a sign, "Truth brings relief to the voice that speaks it, and hope to the mind that hears it." I have learned on here that I am not alone. I may still be a little weird and misunderstood at times (har, har), but I'm not alone. And my feelings are understood, even if my words aren't. There are so many people out there who care for me, and I wasn't even trying! They like me for me, and the whimsy that I bring just from sharing the things I like with them! I didn't have to perform, or acheive, or prove myself. I just had to be myself and that was plenty enough.

I may be at the mercy of a chronic illness, but that doesn't diminish my spirit!

Thursday, April 3, 2014


Today's #HAWMC post is to make our own "Keep Calm..." Poster for our chronic illness. Thankfully, my Unicorn Sister, did this for me last year, because I'm migrainey this morning & it's into the dark for me! I'll see you tomorrow, for the next HAWMC challenge! <3

Wednesday, April 2, 2014

Wordless Wednesday #HAWMC

Today was supposed to be a #picture post! but I cannot get the combination of Blogger, Safari, and my iPad to work... When I try to upload, I'm only given pictures from 2013. Blarg.... Hrumph. Guess I better start on those 1,000 words! LOL! Actually, I was going to take one of the free passes we get for the month! and hope I don't have to use the other two! Lol


Tuesday, April 1, 2014

Laughter is the best medicine #HAWMC

I'm participating in @wegohealth's #HAWMC blogging challenge for the mo the of April! Today's challenge, in honor of April Fool's Day is about laughter. I recently decided if laughter is the best medicine (and it is pretty good stuff, let me tell you), then I want to be the Compounding Pharmacy of Chronic Illness Comedy. I dream big. ;)

But seriously, there is a lot we go through that is SO ABSURD sometimes the only thing that makes sense is to laugh. It's either that or more hurt than I'd care to inflict on myself (I don't have that kind of moxie. I'll take the slow and p-a-i-n-f-u-l route, tyvm). As such, I am now on a Comedy Search, watching my life for any moment that could be funny or laughed at. Like someone who's trained in writing who can think of their words because, OMG! Migraine! "You know... The thing with the stuff." I got so good at translating my mother's jibberish we just turned it into our own language. A "ka'chunka-chunka" for example, is a stapler because that's the noise it makes!

Life is too damn hard to be all uptight and serious all the time. Oh, sure, there are necessary moments like that, and I've been there for several, when people's lives were on the line, or (God forbid) lost. This, right here, even when I'm at a level ten migraine pain, is NOT one of those times. Oh, that doesn't mean I want you lolligaging with my rescue pain medications... Just that I know perspective. It may be level 10 pain, but I'm not bleeding or turning strange colors like purple & blue.

It doesn't matter that I have a chronic illness... Or perhaps, in fact, because I have a chronic illness, laughter is something I still want a lot of in my life. Not the humiliation laughter, you feel me... But the "Ain't life funny," in that universal sense that we all can enjoy. We err, because we're human, and sometimes, that's hysterical! Laughter is healing, laughter is cleansing, laughter is calming, and it's free (unless you're seeing a professional at work ;).

My disability actually started in comedy, on the night before my surgery, after my last day I was to work Asa healthy person, my friend and I howled, with tears streaming down our eyes! and laughed out @$$es off at Eddie Izzard's genius. It was just what I needed to survive everything that followed... If it's a day I can laugh, it's still a good day.