Wednesday, February 26, 2014

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!

Monday, February 17, 2014

Negative Nancy

I didn't want it to happen, but it has. I have become so jaded that people assume I'm just being negative. They don't see the scars of experience that led me to think this way. I know people block and don't read my Facebook posts because they can't handle it. Hell, if I didn't have to endure this, I wouldn't listen to it either!! So I'm grateful when people do. Sadly, that gratitude can turn on it's head if I'm told that things can't be as bad as they seem, that I must be exaggerating, because life just isn't like that. Nothing gets my Scottish up faster than trying to tell me what I experienced wasn't real, that I must be imagining things...

I know why people don't want to be around me. I don't want to be around me. But I don't know how to be any other way. I'm not negative because it's reeling me tons and tons of rewards! I'm negative because that's what keeps me safe. It's the most horrible form of negative reinforcement I can think of, because it works.

Now, I know what your thinking. How can you assume things are going to turn out badly? And I'd pose the same question back to you: How can you assume things are going to work out? Neither of us truly knows. We're basing it on our experience. And 50% of the time (going by actual statistics, not imaginary ones), you'd be right. Which is why it works for you. Hell, Vegas odds, terrible though they are, work well for most people!

Here's my experiences that tell me I am within perfect rights to be freaking out right now.

I was told that there was no way I could have adrenal insufficiency and then the tests came back that it was worse, it was secondary adrenal insufficiency and my thyroid & gonads also didn't work. 

I was told there was no way my pain could be as bad as I said it was, and then I find out that I'm the only person in the bionic device study who useso the device at 20, that most people use it between 4 and 8, and I was going to need an extra battery because the machine wasn't designed to be on that long

I was also told that the reason they couldn't let the bionic device go any higher is because after 20 milliamps, that's when you literally start frying nerves, and they couldn't risk that and still get FDA approval

I've had a hospital try to tell me it was a panick attack when it was actually two 7mm kidney stones

When I went in for my root canals, the orthodontist said he's never seen teeth rot that fast, even in patients that never use a tooth brush. He's had cancer patients and Sjogren's patients, and this is still unlike anything he's ever seen.

Last November when I called for an ambulance because I was feeling funny, I though I was about to have a seizure. However, when they looked at my bloodwork, my potassium was so low they were shocked I didn't have a heart attack. 

It's not like I immediately beeline for the worst possible outcome. I know it's bad, I go get it checked, and then I'm told in no uncertain terms that I am a total freak of nature, and that they have no idea what to do with me. 

So when people try to tell me "I can see how you feel that way, but it can't be that bad..." It's all I can do to keep from screaming back, "You're right! It's worse!"

But who makes friends that way?

I don't want to be a Negative Nancy, but is it my fault she's right? 

Sunday, February 9, 2014

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:

Join us by going to 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!

Monday, February 3, 2014

Saturday, February 1, 2014

the truth is, the truth is hard to hide

There's too much damn evidence....

If you're really going through what you say you're going through, the evidence is all around you. You spill it out naturally, and the facts don't change. They stay facts. Or, if they change, they change for good effing reason. And those reasons are, as lawyers like to say, are "discoverable."

Dis, as in "Ooooo.... he don dissed you!" Disrespect, distaste, disaster, etc.
Cover, as in to hide

Add it up: that which is impossible to hide. Not coverable. Cannot be covered. uncovered.... KNOWABLE

aren't words fun?