Anxiety? Ya think?

So I saw this pain psychologist, and he ran me through a personality test. I scored high on anxiety. So he referred me to a biofeedback specialist, but apparently even if you have slight asthma, that can ruin biofeedback. 🙄 Another medical option stymied by some other diagnosis. What else is new?

But then I saw this by @VoiceoverPete and it hit me: It's not that I'm anxious... It's that my anxiety is totally justified!

Give a listen:



That bad thing frequently comes to pass, and sometimes catastrophically. The pain— interruptive pain— is guaranteed to show up, if not now, within 20 minutes of now, usually less than 10. It may be a stop & take medicine pain level or a stop everything pain level, but it's coming.

And I fall super short of normal all the time. Several roommates over the years have expressed concern over the years. I was forbidden from hand washing dishes because I can't feel the dish to know it's clean and I can't see if they're clean because the same nerve damage ruined my eyes too. I have no confidence my "best" is good enough.

Thus, is it any flipping wonder that I'm anxious? It's actually pretty astonishing how calm I am. But to be fair, it's boring now. Unexpected? Sure. There's no warning. But it's pain so familiar, so... Tuesday, that it's just not worth a fuss.

The thing I hate the most is I'm such a waste of a human being like this. All this potential to give back but— crap. Hold on. It's medication time again...

Pain versus Life

I'll be honest. I don't like leaving my house. My house is my comfort zone, somewhat literally. When you suffer from debilitating pain that can suddenly take away your ability to walk or grasp with your hands, and that pain comes on somewhat randomly, well, then there's a big difference between you leaving the hoise and me leaving the house. There was one time I had someone hold my purse, and he asked why it weighed 20 lbs. when it was so samll. I replied without thinking, "I have to carry so many emergency supplies. It's not just the emergency shot, it's not just the breakthrough medication so I don't throw up or become immobilized with pain. It's all the paperwork I have to carry that goes along with those medicines, all the doctor's business cards, all the emergency contacts (in case my phone is locked). And then there are the regular day to day items like wallet and keys. It is a minor logistical operation every time I leave the safety of my home. And that can create enough of a barrier to make me not want to go outside.

Even today— somehow my breakthrough medication fell out of my purse and I didn't have it on me when I needed. That meant having to muscle through an event, trying to concentrate, and also trying to keep my breakfast down. I learned earlier this week that movie theaters have only gotten louder since my migraines started. Apparently kids these days want to feel the movie explosions like some thrill ride, not just watch a story on screen. I about collapsed, and we were in the back row! (Thank goodness the feature was more an art house film, but even then there were parts in the soundtrack where I wanted to strangle the director, "Are you trying to hurt me? Stop the noise!" But thankfully those were few and far between.

But it made me realize, it's not just me! Well, it is mostly just me that reacts this way, but also, people are demanding more and more sensory input where I want less and less. As another blogger mentioned, I'd be happy if things were just normal for a while: "I want to sustain some sense of balance and maintain my work for a while." From Nikki's post, Maintaining consistancy is a good goal to have. And considering the roller coaster of pain we have ride "Forever," a nice, flat straightaway is a good change of pace.

So is it any wonder I find myself dreading the moment I know I have to let go of the handle of my front door? Not really. I don't know what to expect as much as the next person, but I can guarentee there is a high likelyhood that I experience pain. Sure, that pain is just as likely at home, but at home I know I can find comfort, I have the tools at hand that I need to take care of myself. It feels safer to stay at home because it is safer to stay at home.

But with spring exploding outside and around me, I also have a draw to be outside, to be with people, to explore, and discover, and grow. (My garden is full of little potato plants that have just burst through the soil!) I want to be able to be out there, engaged with other people, helping my community. And that very real fear of being stuck somewhere, in pain, unable to make my way home, can stop me from stepping outside my home.

I think, like Ms. Albert mentioned, I need to scale down my goals. Though I clearly have spring fever, I can pace myself as well. When I learned to ride a bike, it wasn't all at once. I started on a Big Wheel, moved up to a tricycle, then a bike with training wheels, then just one training wheel, and when I graduated to two wheel was when I realized the third wheel was causing me more trouble than helping. I had learned how to balance myself even as the bike moved from side to side beneath me. I learned how to feel the invisible tug of inertia and gravity and use those forces to balance and propel myself forward without thinking.

I am not there with my chronic illness yet. I need the training wheels of an emergency stash of pills in case they fall out of my purse at home. I need the emergency shot and the pounds of paperwork that go with all these medications. I am not in the clear yet. So it's perfectly okay for me to be cautious, and scale back my ambition to a more acheivable level. Does that make me less capable? Hardly. Though I may not be able to soar on invisible forces like I did as a kid, I now respond to much more serious invisible forces, and it's a testiment to my hard work that I am able to do what I can now, even if it's only at Big Wheel level.

Recovery is not a straight line, it is a ribbon that we follow through many twists and loops. We are always moving forward along the strand, even if it looks like we've fallen back. And it's okay for me to pace my recovery at a rate where I'm comfortable. After all, I'm the only one who really knows what's going on inside me. When consistancy has been gone for so long, it is a worthwhile goal to have.

Thank for the reminder, Nikki!

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.

Then...
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!!

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!!

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?

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

Pain Induced Insecurity

No matter how successful I get, #pain can make me feel lower than worms. I'm not talking about the migraine mood swings I've mentioned before. I'm talking about the feelings that really intense pain causes in an of itself.

The first question pain always asks is: "Why is this happening?" If there's a satisfactory answer (example: you're sitting on your leg and your foot has fallen asleep) then appropriate action is taken (you change how your sitting and rub your leg) and the pain resolves itself. Greater injury requires greater courses of action, of course, but most pain serves a purpose. They believe even migraine pain, since it's the 2^nd prevalent disease (second only to cavities) world-wide, serves a purpose. But no one has a good answer to the question why we get migraine pain. So it should be no surprise that when that pain occurs, without a satisfactory answer, what's left in its place is a gaping hole of insecurity.

Did I do something wrong? was it something I ate? Was it something I didn't eat? Was it my sleep or lack thereof? Is it the weather? Am I coming down from stress? Have I take my medication? Is the medication working? Would it help if I were in a cold, dark, quiet room? Or should I be in the shower with hot water and ice packs? Should I sleep or will lying down make this worse? HOW DO I MAKE THIS STOP???!!!

Usually followed closely by:

Why is this happening to me?

Which of course leads to:

What did I do to deserve this???

The answer is: Absolutely nothing.

But of course it doesn't feel that way. It feels like Hell. It feels like unholy torment on Earth. And when there's not good answer why, all that's left is a feeling of unjust despair.

That's why it is SO important to have a distant shore on which to set your sites. A distant shore is a goal, something on which you've set your sites. It has to be something for you and for others, so that other people need you, and you want to do it for yourself and your own self-esteem as well. It could be seeing your kids graduate, or health activism that you do online, involvement in your religion, or in a peer-support group (if you can't find one, start one!). Whatever works for you as a far and distant shore, make one.

The result is something to fight for, a reason to tell the insecurities, Hush up now. You're only temporary. You will go away when the pain is gone, and hopefully that means soon. In the meantime you mean nothing, because I have PLANS, see, and I'll be right back at 'em when you're gone.

But, oh, having just having come from that experience I can tell you I felt lower than a ketchup stain ground into a Manhattan sidewalk by a million pedestrian commuters. The only benefit is, it's Manhattan! lol Seriously, though, I'm so glad I had something to look forward to once I got well. I really like the thought that I didn't have time for this because I had too much to do! After so many years of being crippled and incapable of production because of pain, it's nice to have a shore I know I will be working towards when I'm well again.

When I reach that shore, I rejoice, celebrate, relax, and then once fully savored, I set another distant shore. ;)

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! ^_^

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.

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. :)

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 needed...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! ;)

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 http://hub.am/1dBSR2Y

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!

Outlasting the Crash

You'd think after 11 years I'd handle these #rises & #falls better, but I'd be lying if I told you that my depression two days ago didn't feel exactly like my depression in 2005, when I would cry myself to sleep in my shower. Isn't that funny? After all this time, and all my accomplishments, none of that matters when the symptoms take hold and send me spiraling through that same old routine.

In a way, though, it's freeing. If each time it happens it's the same no matter what's going on in my life, then it can't have anything to do with me personally! Let me say that again: if my soul-crushing depression is the same today as it was seven years ago, that means those feelings are the disease, and have nothing to do with me. I've changed a lot in the last seven years, and made amazing strides. My disease has progressed, but not in such a way to overwhelm me completely. I'm not dealing with a sudden blindness or the loss of a limb that would turn my whole world on it's head. Nothing so dramatic. So if the depression is the same, "ALL IS DOOM!!" feelings, it stands to reason the two are NOT connected!

This is why the friends who know me know to take these phases with a grain of salt, comfort me as best they can, remind me of the reality of things in a calm, non-judging way... But pretty much we all just have to wait until the storm has passed and I get to be me again. That can take days, and depending on the season, weeks. Spring and the Summer rains here are the hardest for me. When the barometer goes on a roller coaster ride, so do I. (This being Colorado, by Spring rain, I of course mean snow.)

I wish I could be a courageous leader all the time. I wish I could always rally the flag. I wish I could always be the light in the darkness for others, and not get afraid of the dark myself. (There's something moving out there!!! Oh, wait. It's me. I'm caught on the blankets.) But then of course I have to remember, I wasn't born a machine, nor was my intended purpose to be one. "I make mistakes, therefore I am..." -St. Augustine (Hippo) (Hey, if a saint can do no better, what do I expect?!)

Now that I have survived the low part of the crash, I'm starting to feel hopeful again. I have a lot of "homework" and research to do, but the Independent Living Center I'm working with now makes me feel a lot less afraid. I don't think I'm quite at the level where I can participate in the Plan to Achieve Self-Support just yet (I still have yet to meet with a kidney doctor to know what I can expect of my new diagnosis, but it's on the calendar). In the meantime, however, we may be able to find me something where I can at least afford where I'm living now, and be able to buy my food and medication at the same time! Dream big! Lol

In truth, I do still have big dreams, and I hope to accomplish those too. It's just going to take more creative thinking to accomplish that; that is, it's not as simple or easy as I first thought it was when I dreamed of this...

But then, is anything?

The difference between #acceptance & #approval

Back when I was convinced I was an alcoholic, (15 years sober until my doctor proved to me that I could do what Alcoholics Anonymous calls "controlled drinking", i.e., I really can "take it or leave it") I studied the Big Book of Alcoholics Anonymous like it was my Bible. I was dedicated, and I was going to do sobriety "right" (what ever that means! Lol). My edition of the big book is the 3rd, so my copy it's page 449, newer additions will be different. But it's a story by a doctor/pharmacist (yes, he was both!) and it has a really great passage on acceptance. It goes like this:

Page 449 (3rd edition...)

And acceptance is the answer to all my problems today. When I am disturbed, it is because I find some person, place, thing, or situation – some fact of my life – unacceptable to me, and I can find no serenity until I accept that person, place, thing, or situation as being exactly the way it is supposed to be at this moment. Nothing, absolutely nothing happens in God's world by mistake. Until I could accept my alcoholism, I could no stay sober; unless I accept life completely on life's terms, I cannot be happy. I need to concentrate not so much on what needs to be changed in the world as on what needs to be changed in me and my attitudes.

When I first read that, I thought: D'oh! Busted.... That is *exactly* what is wrong with me and my life. and that's what originally brought me to choose sobriety, even though at the tender age of 19, I wasn't even legal to drink! I even went so far as to go through an out-patient (because I volunteered) sobriety program called Edgewood in St. Louis! But when my health problems started, it became very clear I couldn't say no to drugs anymore.

Now, A.A. Has a number of publications, and one of them is called Living Sober and in there is a story about an alcoholic who had to have surgery and was afraid of taking pain pills (like me). A.A. gave me an easy to follow rule: if you're in pain --- take the medication. If you're not in pain --- DON'T take the medication. Easy, right? Problem is.... Pain can become it's own disease and when pain goes chronic, using short-term pain killers is actually what you *don't* want to do...

But back to acceptance. In my many travels, I actually got to meet Dr. Paul O. before he died, and at the time I was dealing with migraines and I was being treated like a drug-seeker, even though I was open about my recovery, had a sponsor, was holding meetings, the works! I told him, I just can't do it.... I can't forgive these doctors for how they've treated me! How do I accept this? I'm being tortured by chronic pain!!!

That's when he said to me: "Acceptance is NOT Approval."

See, if I'm driving down the road, and the car in front of me slams on it's breaks, I may not Approve of them doing that.... But if I don't Accept that they've slammed on the brakes and act Accordingly, I'll end up in a wreck!!!

So it really is a choice, my attitude. But that doesn't mean I have to like the choice I'm given!!! I can accept my illness, but I don't have to try and Enjoy it! Lol

That's just nuts!

To all things, there is both success and failure

We can look at this in a binary fashion: to have a winner, there must also be a loser, so in at sense you can never have one without the other. But beyond the singular event, there are also problems of success, and benefits of failure. That is, once a win is accomplished, that introduces an new set of challenges, obstacles, trials and tribulations to face, along with the possibility of failure in these new things, right on the heels of our success. It can take all the fun out of winning! On top of that, lose often enough, and you're quick to learn that losing isn't as awful as everyone makes it out to be either... Well certain losses cannot be recovered from, this is true. But just as before, losing can in fact create a greater wisdom, a greater understanding, a surer footing, clearer objectives....

Each one of us is different not only in what we can and cannot do, but in what we do and do not desire! Our experience shapes us in peculiar ways... My favorite dog, Sargent, got sprayed by a skunk when I was a child, a smell I know repulsed me before from scratch-n-sniff stickers, but afterwards carried a memory of love and comfort. That I associate good things from noxious smells is weird to a lot of people. But that's only because they don't have the experience linking the bad smell with a good feeling. If they did, they'd feel as I do. I have cousins that love the smell of manure because it means horseback riding adventures to them. Other cousins of mine love the smell of motor oil and exhaust fumes because that means go-kart racing. Any of those smells I could do without!

My point with all of this is that, in order for us to be able to decide what we call failure or success, what we call a problem or an achievement, depends largely on what we desire, and those desires may not be logical at first blush....

See, I've been feeling badly lately about letting my spleen lose on my Facebook page. There were friends who turned from me, turned on me, and turned towards. Though my intention was only for the latter, there are always consequences, seen and unseen. I understand that some people just can't listen to what I have to share and that's fine... Most of us have plenty to deal with on our plates, and cannot bare to hear suffering of that sort. I've experienced the same! It doesn't mean that my heart doesn't go out to them, it does.... I just can't listen because of how fragile a hold I have on my lot!

To the ones who turned on me, I get that too... But I'd like to point out that the object of your fussiness is not me, personally (as much as it would seem to be). Rather, the one you really should be fussing at is my disease. That's the only distinction I want to make. Many of your complaints are my complaints too!! And, unfortunately, I'm in no better position to address them than you are. You just have the luxury of voting with your feet. I'm stuck here. Please understand that I am not some all powerful being who has made things this way because it's the way I want things to be! You of all people should know how difficult it is to get what we want.... So please don't mistake my tolerance of crap as a desire for crap. Just because I accept a crappy situation and try to make the best of it doesn't mean I was happy to be invited in the first place. 

And to anyone out there who thinks: "I'd love to complain about my health and not have to work, too!" Let me point out a few facts.... Do you think I make friends or win applause because I'm complaining? Do you think people rush towards me with a hankie and soothing words of comfort? What happened the last time you complained of a health issue? We're people lining up at your door to provide comfort & aid? No! So why do you think I'm getting any of those things? 

Not want to work, are you kidding me? Why do you work, hmmm? So you can afford your nice lifestyle, right? Now... What am I missing because I can't work? Oh yeah! That nice lifestyle! Just because when you take time off from work it's called a vacation doesn't mean that I'm on vacation while I don't work. Are you kidding me? I can't afford to live on my own because I don't have a working income! How on earth do you imagine this is some non-stop vacation for me? Do you know how awful daytime TV is? No, because you have "better things" to do. Don't you think I wish I had "better things" to do too? 

The same reason you have for not quitting work and becoming a bum is how you know that becoming a bum wasn't my choice!! You only have to look at my track-record to see that 1) I don't shy away from things simply because they are difficult 2) even when the going is tough, I can see a project through successfully to completion 3) I am damn good at what I do and win praise easily while enjoying the whole process 4) the only thing I complained about when working was my commute 5) I didn't wait to go back to work once I got pain control, I started that first month I knew the medication was working...

All of this evidence flies in the face of my detractors and proves their theories are phantoms! 

And the reason I share these things LOUDLY, even though that often works against me is because, this ain't all about me, baby!

I want everyone else dealing with chronic illness to know it's not just them. I want everyone suffering from these accusations to know that it's not their fault their being accused in this way. I want to help my community of chronic illness survivors and #thrivers to know! beyond a shadow of a doubt! that they are NOT alone, and they don't have to be alone... That I am there with you, even if I can't be physically with you.... And I at least understand that you are doing your very best against terrible, terrible odds. I see you shining in the darkness!

And even if you falter, as I have--- without grace and with deplorable behavior--- know too that even if it wasn't okay, even if we deserve that glowing brand of shame on our chest... Even if they were right to lock us up and throw away the key... There is STILL something of value in you, that you can take comfort in and be proud of! All it takes is the right moment to see, the right stroke of luck to unlock a talent you never knew you had, the right opportunity to change your life forever into what you've always wanted it to be and more...

It may never come to pass, but that doesn't mean it's not there. It may be hidden treasure, but that doesn't mean it's not treasure!

As an example, I'd been working for months, close to a year on a project, with a couple of people I knew. My life had been turned upside-down for this project, as unforeseen obsticles diverted us for. Our original course of action. It all came to a head one night when we put everything we had into this launch, hoping that we could get this project to lift off... Only to discover we'd all been working on a lie. It was a complete and total fabrication. There was no project, there was not team, there was no target, there was no spear to throw at the target... It was all... Lies.

I went to my teacher dumbfounded, and horrified, because my graduation had depended on that project.... I though for sure since the whole thing had been a farce that would mean a nullification of my certification and redoing all the work, only to find out, no, I was fine, my grade was never dependent on the outcome anyway.

"But the whole thing was a lie! How can you judge my ability to hit a target if there was no target or even a spear to throw?"

My teacher replied, "Yeah, but you threw..."

Much like having an education, just because I'm not writing out equations doesn't mean I don't know math or chemistry. I can have the ability to do something, and have that ability have value, even if I don't express or use that ability. As much as it is useful to have our computers work in binary--- yes/no only--- doesn't mean that's how the world works! There's yes, no, maybe, both, neither, almost, not yet, and not anymore, as well as a host of other conditional states that we recognize. So too with ourselves, rarely are we either good or bad, useful or burden, lovable or bothersome, winning or losing... Usually we're a combination of all of the above!

So when I despair that I'm stuck and I don't know how to fix things, and I'm howling to the moon.... I most likely am absolutely right! But you and I both know the story doesn't end there. Time, that one constant in our lives, changes things. Including my mood! Lol So thank you to those who have been patient with me.

I live my life openly, honestly, willingly so that you can know you're not alone and not as bad as you think you are ;)

Blessings upon you!

February #TweetChat with @WegoHealth

Here's a link to the topics and questions for Tuesday's TweetChat hosted by me, sponsored by WegoHealth with the theme: "In Sickness - Love & Chronic Illness"

You can download the PDF here to follow along: https://www.dropbox.com/s/9ujcc68d1ms11u0/WegoHealth%20Valentine%27s%20Tweetchat.pdf

Join us by going to TweetChat.com and enter the "room" with the hashtag #hachat for Health Activist Chat.

We will start at 1pm Mountain Standard Time, 3pm Eastern, this Tuesday. After welcome announcements are made, we'll start with the first topic. I will pose the question to the room, and give folks a few minutes to tweet back with their answers & respond to one another. I will continue by posing questions as laid out in the PDF until our time is up.

Be sure to spread the word and join us if you can! Everyone is welcomed, even if you're not a health activist, we want to hear from you!! Have you had to manage love and a chronic illness? Have you loved someone with a chronic illness? Are you the child of parents with a chronic illness? Sick, single, and trying to date? Please join!!

I look forward to seeing you there!

The Grinch Has Nothin' on Chronic Illness

It will happen when dealing with a debilitating chronic illness---your disease will do something that scares you. There's one symptom I know to watch for that means Really Bad Things for me: orthostatic hypotention, a.k.a. blacking out upon standing. It's how I knew my disease had left remission in 2009. It should not be happening now; I'm on corrective medication. That it is happening is Bad News. So rightfully, I'm frightened. Add to this one of my pain meds has quit, with the new one not scheduled to be available until the first of next year and the holidays aren't so jolly.

I have to remind myself to care about the holidays because I know other people care, and bigger still, they can't tell that my indifference to the holidays is because I'm so preoccupied with much bigger issues. I become hyper-focused on daily survival (because that's what it takes) and I lose what month it is. Time becomes a blur---either I'm dealing with symptoms, or dealing with what I had to put off because I was dealing with symptoms. I learned a long time ago in times like these, I have to limit my outings to once every few days... I need at least 2 days to recover from the last 2 hours I left the house. I get about 3 hours of normal activity a day. The rest is in battle with my own body, and it's exhausting! It was just Halloween last week, right?

To cope, I watch a LOT of Netflix. My current escape is anything Anime, as long as it's not about giant robots. The Japanese are very understanding of ignorance, seeing it as an opportunity for giving the gift of education, rather than something to necessarily be ashamed about. I grew up under the rule that if you didn't know, you were ridiculed, so it's a refreshing change of pace. So they use their cartoons to educate kids on manners, how to resolve conflicts, how to deal with bullies, and all without being condescending like those After-School Specials you and I grew up with. And it also reminds me of when I worked at Nintendo of America in Seattle, when I was one of the few people who wasn't bilingual. I remember the sound of Japanese going on around me as business was conducted. I remember how much I struggled to learn phrases like "Thank you for the food, let's eat!" and "Thank you, it was very good'" Those were happy times...

Because I get sucked into that microcosm of surviving moment-to-moment, just trying to claw my way back to normal, I forget what my strength is... that I get back up again. I can't keep up with normal folk, but normal folk don't know how I do what I do.

From my point of view, it's like I'm weathering a storm and just hoping this time, the house doesn't come down around my ears. But that's not what others see. They're not in it, so they don't know that I get scared every time, that I despair every time. All they see is that I go through something like that, and when it's over, I get back up again, like it never happened. They don't understand how it's possible to be so old-hat at suffering that it becomes more of a nuisance and a bore. I know that mystified me when I first got sick. But I saw it happen through the movie Frida, and now I'm finally at that magical place--I'm bored with these health crises. I'm tired of it. It's no longer scary, until it is (and then it's really scary), but that too, has become old and stale.

The difference between then and now is, I actually get tastes of real life between the suffering. If it was all suffering, I don't know how long I'd last. I really don't. But now that I've had moments of life again, all this suffering is just an interruption. I know it's just b.s. I have to push through until I can wake back up to life again. I don't have time to despair when the sun is shining. I don't know how long it's going to last. I've got to take advantage of it, the second I become able to, otherwise I'm wasting very precious time.

Other people see that as strength... my new roommate doesn't understand how I do it. But it's easier than you'd think when you don't really have any other choice. I've been forgotten before and had people stop inviting me out. They thought I'd left. I had... kinda. Not by choice. But how do they know that? Hear it enough, and it sounds like an excuse, no matter how true it is. "Call me in January!" I ask, knowing that no one's memory lasts that long.

So I've decided to start throwing "Still Alive & Kicking!" parties, to let people know when it's cool to start calling again. People want to be polite, but we have no etiquette book on chronic illness, much as I want to write one! lol Seriously, though... we have parties to let people know about weddings, babies, product launches... why not one to let folks know I'm back in the game? And it would be a great way to sweep away those post-trauma blues.

So while my illness may have stolen Thanksgiving, Christmas and New Year's Eve... I'll throw my own festivities just as soon as I'm able. Coming to a Friday Night in 2014! Just you wait & see! I'll be back, baby...

How about you? Ever had a "Get Out of Hospital" party? What did you do? How do you cope when your chronic illness steals holidays from you?

Everything happens

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Fighting Bitterness

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

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

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

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

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

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

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

No Happy Thinking Required

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

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

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

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

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

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

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

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

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

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

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

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

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

*sigh*

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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