The BIG Sleep Myth

Did you know that it's completely UNNATURAL to sleep for 8 hours a night? Think about it... no other animal sleeps like this, and it would be extremely dangerous if it were actually required! Your "sleep issues" may not be issues at all, but a complete misunderstanding of how our bodies REALLY work. Not only do scientific studies prove this to be true, but back before the Victorians and artificial light, it was considered natural to have a First Sleep, followed by an hour or two of wakefull ness, followed by a Second Sleep.

His book At Day's Close: Night in Times Past, published four years later, unearths more than 500 references to a segmented sleeping pattern - in diaries, court records, medical books and literature, from Homer's Odyssey to an anthropological account of modern tribes in Nigeria.

Much like the experience of Wehr's subjects, these references describe a first sleep which began about two hours after dusk, followed by waking period of one or two hours and then a second sleep.

"It's not just the number of references - it is the way they refer to it, as if it was common knowledge," Ekirch says. [http://www.bbc.com/news/magazine-16964783]

How many people are shoving "medicines" down their throat for a problem that shouldn't be seen as a problem? And how much healthier would we all be (including shift workers, who have a notoriously difficult time switching between schedules) if we recognized our true nature?

Makes you wonder what else we might have wrong, doesn't it?

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!

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? 

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 most versatile word in English, no, not shagging....

The word is Buffalo: http://youtu.be/65Mv3jHgiew this link is safe for work...enjoy!

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


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


aren't words fun?

Time, time, time... See what has become of me

(Quick Thank Yous to Steve for picking up my Rxs, & Bianca - who called for an ambulance for me in Colorado while she's in Kansas!)

I always prefered the Bangle's version over Simon & Garfunkle. But when I looked around at my possibilities, I was easy to please. I enjoyed so much, the landscape was WONDEROUS. Even now, sick, I still enjoy so much. I live in my head, and (with the help of much therapy and pain control) my mind, onceagain, is an awesome place to be. No one really understands hoe soul-stealing pain can be, until they've lived it. God knows I thought I did. I had two trick knees, kidney stones... Black-out, seriously-respected-by-doctors levels of pain. And it was. 

But then it got worse.

The problem with pain is that it is DESIGNED to be attention grabbing and holding by the very functions on the body. Depression with pain is UNAVOIDABLE. Not because of a personal lack of anything.... Rather, the same chemicals that make our mood feel happy are also the same chemicals used by the body to HEAL. When those stores run out because of a constant drain of pain, NO ONE could even possibly be immune to a decline in mood. THINKING CANNOT FIX A FUNDAMENTAL LACK OF BRAIN CHEMICALS. The patient is not to blame. Blame the disease.

After I came back from the hospital with an Adrenal Crisis yesterday, I happened to spot a photo of myself when I was 29, and near the point of death. And I was like, no WONDER people didn't think I looked sick. I looked stunning!!! 35 pounds underweight, shoulda been in a coma, and I look like a million bucks.

So OF COURSE people don't believe when I say I hurt or my feet are on fire, or I can't feel my hands or hold things. Well, they can see that I drop things and that half of my fingers are limp... they can hear the swears, and can see my "pain wrinkles" come & go (involuntary facial cringing from pain). But that's not obvious, and certainly not noticeable if you don't know what my "normal" looks like.

And bless, there's a LITANY of symptoms!!! I had a medical screening today for a very basic life insurance policy, and the poor girl was 30 minutes over time because of everything I had to explain!

The autoimmune hypophysitis causes the body's master gland to not function completely. That causes vision problems (damage to the optic nerve that cannot be corrected with eyewear), chronic migraines (because my immune system is literally trying to eat part of my brain), hypoadrenalism (deadly + over 100 of it's own symptoms), hypothyroidism (deadly, also with multiple other symptoms), hypogonadism (lack of female hormones & all associated symptoms). Add to that MRSA from the bionic device surgery for the migraines,  Sjogren's Syndrome, small fiber neuropathy as a result of the MRSA (body-wide nerve damage, internal & skin) and something yet to be determined that is rapidly destroying my teeth like my orthodontic surgeon has never seen before. 

The migraines mean I cannot distract myself from pain and also mean severe episodic nausea with paralysis of my stomach which can cause an inability to get medications in my system in a timely matter (they just sit in my stomach & can't pass into the small intestines to be absorbed). This complicates EVERYTHING.

I cannot go any higher on opioid painkillers because I start sleepwalking. The gaba class of pain medication causes pitting edema, which is dangerous to my heart. Any medications affecting the salt channels don't work because I'm on prednisone which is supposed to keep those levels flat & steady, but for some reason, I'm hypokalemic and have unexplained rapid tooth decay, and the calcium gets deposited in my kidneys as calcium oxalate stones (last two were 7mm each, in 2012). 

I cannot go higher on namenda. I cannot use muscle relaxants (I fall asleep with more than 0.5mg of benzodiazapam). I am extremely sensitive to stimulants, some which have the opposite effect (anything from the cocaine family and caffeine make me sleepy). Anything effecting norepinephrine makes my heart tachycardic & I vomit that night & the day after.  

I cannot use beta-blockers or anything that could potentially lower my BP. I'm usually 110/70, since forever, but the issue is, I constantly run the risk of an Adrenal Crisis where my BP bottoms out so my blood stops flowing and my heart grinds to a halt. I also feel terribly, terribly cold, cannot get warm no matter how many blankets you pile on me, and if I fall asleep, I could potentially not wake up (coma, then death).

When you feel the worst you've ever felt in your life and it's been that way for years, when a doctor says, "We need you on medication yesterday. I don't know how you're not in a coma!" you get really serious, really fast. Everything changes and your life is turned into a situation you didn't know could exist. What you though was solid ground is air, and you're falling still, with no idea where the ground and that sudden, final stop is.

So it goes without saying, I'm a little freaked out, because I was doing SO well! I was becoming reliable and dependable again! Symptoms were managed or manageable! It wasn't perfect by a long shot, but it was workable. I was happier and more grateful than I'd been in years! 

But oh, what was waiting to pounce.... So now I feel like I'm back at square one: a life-screwing set of symptoms of unknown origin are creating not just issues but life-threatening issues, and no doctor wants a "problem" case like mine, even though they consider me, personally, not a problem.

If this were my fault, I could atone! I could change my behavior, I'd have the ability to do something about it. But this is not something I'm doing of my will. I wish it was, just to be able to influence it! I do everything I possibly can, yet I'm still losing ground. 

And while, yes, this frustrates me and saddens me, I also cannot deny how much compassion, wisdom, understanding, and love for my fellow humans this condition has given me. I have seen horrors, and I have seen real, living, breathing angels-on-earth in humans and animals alike. There is something to be said for truly understanding how precious life and a functioning body are, and how quickly, easily it can all be lost, no fault of anyone.

When I was able to start working again, I was so damn grateful, nothing was ever a problem, even when everyone around me was losing their cool. I'd been through so much worse. Like the combat medic who was my ER RN in Seattle said when I asked him how he was so incredible compared to all the other nurses, he replied simply, "No one is shooting at me." 

When my symptoms are raging, it's like I'm being shot at. I know any second it's going to be massive pain, or worse, and I've got to try to think and keep myself alive and manage whatever life is throwing at me when my disease decided to flare. It makes a girl not at her best, to say the least. And then there's the effect on my mood, which kills my ability to see opportunity & hope. My mind is fixated on problem solving, not flights of fancy. Pain roots my brain in my body, precicely when it is most miserable to be there.

So symptom control is everything to me. I don't dare use ANY substances recreationally, even legal, socially accepted ones, because there may be a point when I need it as a medicine, so I don't want to build a tolerance at all... I'm at the end of options, just waiting for a change: a new drug clearing the FDA, a new experimental program, ANYTHING that could mean getting my ability to work and live normally again. Hell, I'd like to be able to eat without pain! I've lost 25 lbs in 2 months from the pain diet. When food is FAR more painful than hunger, starving acutally feels better than eating. It's only when hunger gets as painful as eating that I'll take a cracker or two and a few sips of liquid. 

Point is, I'm scared, and have pleanty reason to be. This is not an unreasonable nor unwise emotional state. I need to be vigilant and wary, but this too, comes with a price on my health. There's no winning, rather there's a choice of how I want to lose.

And this post is long enough.... so I'll leave it at that. Thanks for letting me vent ;)

They young & healthy cannot understand (completely)...

So, yeah.... drama llamas in my life currently as rock-me-hard-place. I'm wise enough to know my faults, and I will openly and honestly admit what I know when asked. Why? I learned a long time ago the truth is just easier!!! No "story" to keep track of, nothing to cover up (except, of course understood modesty contraints.... there's a time and a place for naked and nekkid - naked is without clothes, nekkid is without clothes, and up to somethin'!), really, it's not hard. It's quite simple. But simple doesn't mean easy, far from!!!

So yes, I know I can be an unreasonable holy tyrrant... about my symptoms. Anything else? Who cares!!! But if I'm in pain, watch out, I'm either the devil or crackin jokes (the more alarming it gets and the sicker I get, the funnier everything gets.......)

See, Ic an see why a character like the Joker would mess with an actors head enogh to drive him to an OD, accidental or otherwise, doesn't matter. Point is, when you really are that crazy, there are reasons. And if you can't figure out how to leave that crazy & still be okay, it WILL kill you, because death mostly surprises people. Very few die peacefully, amd the ones who do, wow.... you're in for a great final ride, I know!!!!

Dying, when you're really dying, is easy. I've almost accidently died when I wasn't trying to at all!!! I was trying to LIVE!!!! omg.... and the times i was suicidal? Passive.... Why? i have belief that time changes everything eventually.

So yeah, sorry about the recent streams of consciousness.... iPads and Google don't get along.... yet. It's damn tricky to edit posts, amd I've lost more work than I can cry over at this point, hence why the fewer & fewer posts..... techno joy or tech no joy :/ These modern times. Gah!!!

I got too old too quick! lol