Friday, January 31, 2014

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 ;)

Thursday, January 30, 2014

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

how to score pain pills, and how to spot a druggie

Doctors, please pay attention.

It's really simple actually, to spot a liar. You're not as bad as you think you are.

Here's one clue: lies never hold water for long.... people's memories generally last about three months. Ask anyone who has to deal with liars long enough. You keep their close company for a month, and you'll see the lie, easily.

However, I know all y'all get scant contact with effing patients these days, so here's what you do. You use those notes you have to keep, by law, and you ask the patient questions which you already know the right answer too. If you don't like the explanation, well, no medical lawyer would fault you (I'm not one, so best consult with them first ;). I know a few though, so if you need any names.... just ask ;)

I can't spit in my family without hitting a lawyer. Not that I'd spit....

Wednesday, January 29, 2014

No seriously....

So I realize as I have been neglectful here, so have I been neglected... 38 followers? What, no one has time for more than a sound byte these days?! As well, consider if you are actually reading this blog, you are among the 38 most loyal, most refined.... I dare say I bet you call me a friend! So friends gather 'round, because I'm about to take you on the reading journey of your life.....

It all started, I believe, on a Valentine's day in 1973. Fourty weeks is about right... I was an induced labor, so maybe not so auspicious and romantic a beginning.... or maybe so. Who knows.

My mother, ripe crazy bitch that she is (evry sexy woman is a little crazy, otherwise they wouldn't sleep with you ;) Just when you find out they're *really* crazy? For god sake don't marry it!!! (Hi, John, thanks for stopping in ;)

So my cat is blind, and so am I (nearly.... no seriously, they have to reinforce the little lenses in the "glasses" I get because...... effing blind!

So here's the thing.... todays problems are the jokes of tomorrow, out pain should be spoken, it should be shouted as loud as you can, grab people by the throat and say, now Ducky, you will pay attention to ME!!!!

I knew a man once with a secret. And dead men tell no tales. His name was Jeff of House of Gord, and I did some ehh..... let's call it "modeling" back in the day. If you want to know me at my sexual "peak" (because everyone knows women get more skilled with age... and more forgiving of foibles too, boys, that's why you love older women, lol!)

Anyway.... so I was doing this modeling gig because I was young, dying, broke and had no SSDI yet.... no nothing. So what are a few dirty pictures? It's the new millenium, right?

Well....yeah...anyway. My stage name was the old formula: your first pet's first name (Sugar) and your middle name (Wilson). My real first name, Pamela, means the honey elf, sweetness, or other such deritivatives. So it was fitting.

Wilson is an old family name for my great-great-aunt (all the best relatives are your parent's siblings because they know how nutty your parents were/are, so they have ALL the dirt, and know you well enough to think you deserve the Really REAL story instead of the carefully crafted lie your parents made in hopes of protecting you (and their wounded egos ;)

So.....rambling, yeah, seem to be good at that.

here's my promise. I will try, every day, as best I can to send out some message somewhere to let you know I'm alive and well. Well, if not well, alive lol.

YOU promise to check in on me for as long as I'm alive, and keep me in your hearts afterwards. Sound like a deal? I will answer any and ALL QUESTIONS on the most sensitive topics EVAR.

you get me an audince, and I will tell stories.... some of them may even be true, lol

cya on da flip side

Sunday, January 19, 2014

Why comedy?

When I was younger, all I ever wanted to be was cute & funny. When I was sick, any time I could laugh was another reason to live. The situation was never so bad that I couldn't laugh at it. Anytime I was overwhelmed at work, I knew all I had to do was wait. Pretty soon things would get so absurd that I couldn't help but laugh. It helped me cope with my pain and helped others cope with my pain, too. Nothing was ever so terrible that wasn't also funny.

So when I heard this comedian just come out on stage and announce, "Good evening, I have caner! How are you. I have cancer. Great to be here. Cancer!" and everyone laughed and applauded, I was floored. This was new. I have lost friends and family over my illness, ruined a marriage, imploded my career, left me childless, homeless, hopeless... and here she was parading it on stage and people loved it?!? Sign me up!

I seriously can't wait. I know the adrenaline is going to make me sicker than a dog, and the second I get off stage I'm going to need an emergency shot, but WOW. If I can make all of this funny, the nights hugging the toilet praying for death, the terror when death agreed to take you up on the offer, the humiliation and shame about wanting to die and not wanting to die at the same time... you mean... that's funny? That's not a drawback but an asset??? You mean the worse my life gets the more it's comedy gold?

I'm RICH!!!!!!

I just found an effing winning lottery ticket for billions. If tragedy + time = comedy, I've got both in spades. I could start this tonight!

But I also know that it's going to be brutal and ruthless and I am a frail and delicate flower. But it can't be any worse than what I've already been through! I know my disease is going to kill me and cause horrendous pain. How much worse could it be to shine a spotlight on it? It's not like I've been shy....

So I'm really looking forward to this. Be sure to stay tunes for the launch of Denver's new Comedy Production Company, Gräfenberg Productions. We're going to put Denver on the map!!!

Monday, January 13, 2014

No More Fear

Having just discovered @AdamsLisa's "struggle" over the ethics of intimite blogging, I have realized one huge thing: I am no longer afraid. I used to have this constant fear that everything was going to come to ruin and it would be all my fault. Call it a hold-over from childhood, call it a realistic realization of the human condition, whatever. Doesn't matter. I had it, and it DROVE me. I pre-emptively made amends so no one could be mad at me, or at least to soften the blow (you were warned...). But when I woke up this morning, having slept through my alarm and missed jury duty (where I'd already missed the first deadline 6 days ago) and I finally realized what my mother told me years ago, and I was at peace... with my shortcomings. I finally realized I have always done everything in my power. That's never a question. My motives are pure. But whether or not that works is an entirely different matter!

Back when my mother was an Officer in the Navy, she lost her orders. Now, the one thing they told you to Never, EVER do was lose your orders. But what could she do? They were gone and she needed to be somewhere. Of course, when she went to go get a copy she got chewed out and fed a bunch of shoulda/coulda/wouldas.... that didn't phase her. She looked at the official and said without emotion, "Look, this can't be the first time this has happened in the history of the Navy. Certainly you have some process in place to handle this. Can we please start that now?" 

Truth is, most of us are so goddamn busy beating outselves up in our own head thar we LOVE an opportunity to feel better than THAT guy. So of course your gonna get a hard time. Suck it up, Princess. Easily avoided in the future, no use crying now. Get on with it... you still got needs to fill.

Which is why the whole idea of a blog about surviving cancer raising ethical questions just seems so laughable to me. So what your saying is.... we can have campaigns, ribbons, awareness, movies about, human quests for, and all that other crap we have swirling around cancer, but when one woman chooses to tell what she's experiencing herself, that's what's "over the line"?!? Wow... 

I think this must be the sense of liberation that combat troops feel... You're so worryied about whether or not you're going to live or die that you can't do your job. But you've overlooked one simple fact: you're already dead. That's going to happen. There is already a bullet with your name on it. The thing to ask is what are you going to do until then?

There is no way for me to avoid screwing up. Mistake areg onna happen [sic], and sometimes it's my poor judgement, and sometimes not. Blame doesn't matter. However "THIS" happened doesn't matter. It's already happened. What am I going to do now? It's very straight-forward, it's very matter of fact. There's nothing special about it. So why one earth invest the time, energy, and worry? Why get worked up about it? What does that help? 

I know I can get a job done. I know what I'm capable of, and what I'm not capable of. I can be honest about that. The only surprises here are things that surprise me too... I'm not tring to hide, cajole, influence, manipulate or anything else, unless I am, and then you'll clearly know about it. I can live with who I am today, meet my gaze in the mirror, and hold my head high even as I'm pointing out my faults to you. That is an incredible feeling, I cannot tell you. 

There are no "ethical questions" raised by blogging your slow death from cancer. If we can make fiction about the same thing (Bucket List anyone?) why does the real thing scare us so much? It's not like it will go away if we stop talking about it!! Last I checked, everyone living dies of something, and we talk about that all the time without thinking we're raising "ethical questions." You cannot say: "Thou shall not..." This is her life

You might as well ask her cancer if it's ethical for it to create disease. You might even get an answer.

If you do, tell me.

Tuesday, January 7, 2014

Joy from Nothingness

In Loving Memory of my dear friend, Cate Manzo, aka Cate the Great (and she was...)

I had a really early memory come flooding back to me a few days ago and it's taken me a while to figure out why. When I was little, before I understood language, I was marveling at how keys made noise when they struck a surface, when my mother started talking with another woman. They made noises back and forth until they both laughed, and I was stunned. They'd made happiness from nothing! I didn't know that was possible... I though some event had to occur, some item given, some gain had to be had in order for happiness to occur. It blew my mind that it could be made for free.

Woody Allen said tragedy plus time equals comedy, and Tig Naturo proved it. But what's not so easy is finding the comedy when you're still in it... and that's just what I'm trying to do. Just because it seems impossible doesn't make it impossible. There are stranger things in heaven and earth, and more than a few are labratory proven. Who am I to say this or that can't be done? Who is anyone else? 

So this is me, swearing an oath to you. I know your suffering and I've been there too. I will not let your pleas for mercy go unheard. I will find a way to tell our story in a way that people will want to hear. I will find a way to make happiness for all of us. You may be sick, alone, stranded in your house away from all friends and family, and I promise you: your life is not over. You know what you could do, who you could be, if these health problems weren't an issue... so why not start now? 

Why not assume that eventually you'll get better, no matter how far-fetched that may seem? If somehow, someday this all became manageable, what would you do? Now, what do you think you would have wish you had done with this time you have now? Or to put it another way, what can you do now in preparation for that future moment when you're symptoms are managed? If you know what you would do once you're well, what can you still do now to help you be your best when that moment arrives? Do those things, and you'll start to remember what the pain tried to make you forget - that life is worth living despite the darkness that comes into our lives. And we can make our own happiness out of nothing at all, for free. What greater gift in the world is there? 

Cate, I love you and will miss you always. I will not let this darkness diminish the light that's in me, I promise. You were amazing, and I hope I can be half as lucky as you at finding the joy in life. You are still an inspiration, and you truly were The Great. I'm blessed to have know you.