When the cards are stacked against you... Reshuffle

I have heard people say time and time again that they don't know how I do it. "That is entirely too much for a person to handle!" I've had one say. And yet to me... I can't give it any credit. When I get taken over by these dire health moments, it's luck and instinct. It has nothing to do with me. I'm just holding on! I'm not clever or wonderful in these moments. I'm just a living organism desperate to keep living. I believe every one of you would do just as well, if not better, in my shoes. You'd get the job done, and probably with less whining and kibitzing! I honestly wish I could shut up about all of this and just live life, but I've been unable to do so. Instead I've turned it into a blog so I can fake that all my complaining is respectable. Funny thing is, I accidently found a way to make it successful. (Sometimes it seems the only way I find success is to trip over it.)

I started this blog because I was miserable. In my mind, I was a wretched thing like something out of a Dickens nightmare. I was huddled in the darkness, alone and doomed. Then the other part of my mind kicked in. This part of my mind was more like the Ghost of Christmas Present, gentle and joyful. She laid a hand on that wretched child's shoulder and said, "Now see here... You know you're not the only one going through this and you know you don't have it as bad as you could. If you want to learn how to do something yourself, try teaching it to someone else, remember? Now think... if you wanted to teach someone else how to get through this, how would you do it?" And like a dawn breaking, suddenly I wasn't in the darkness. I was in a lecture hall. I wasn't dressed in rags anymore, I was in a nice wool suit. And I also wasn't a child... I was an adult, standing tall.

The lecture hall I had in mind was very specific. It was the lecture halls I had when I was a science major at Saint Louis University. There, the seats slope downwards like in a theater, to accommodate class sizes of 300 students. But more importantly in my mind, I'd be lecturing from a point where the students look down at me. Yes, I'm the one lecturing. But I must always remember to present my teachings as a gift or an offering. Because in the end, it's not my lecture that's important. It's what the students can make from it that is.

Suddenly, everything I'd suffered was of value. These weren't just things I had to go through in my life. These were now things that I could use to help make someone else's life better. It wasn't just my loss. It was someone else's gain. And then too, my inability to shut up about it suddenly became a boon. It was no longer embarrassing that I was an unabashed exhibitionist, ready to share the details of my personal life with strangers. Now, I'm an activist, inspiring others to share their experience, strength and hope as well!

How the heck did that happen?

One thing I will give myself credit for is that I refuse to surrender. Sometimes, that's a terrible trait to have, especially when someone wants to be left alone! But like the title of this entry (given to me by my lovely cousin, Jeremy Diakonov-Curtis), I've decided to reshuffle the deck. The things that give me trouble I will use to make some good. The things I am terrible at, I will admit, so that others can know they're not alone. Like any human being, I have my weak moments. And like most people, I underestimate my own abilities and don't give myself enough credit.

It's difficult to be kind to myself in a world where I have trouble fitting in and keeping up. My random yelps of pain and discomfort are disturbing to people. That's not an unnatural response. And I feel guilty when I cause that discomfort in others. It would be as if I had picked my nose at the table. Not good! If you invite someone somewhere twenty times and it's "no" every time, pretty soon, you just stop inviting. It doesn't matter that the 21^st time would have been "yes." So I push myself to go out sometimes, when I know I shouldn't, because I want to keep getting invitations. It's these little, simple things that I fail at, that weigh so heavily on my soul.

Because from the outside, I know you can't tell the difference. I look fine. Stunning, even, sometimes. I don't look like there's all this going on in my life. There's no way to tell that I'm not just irresponsible and lazy. With other sick people, they know immediately. There are experiences that can't be explained, but you can tell by the way they talk and act that they've actually been there. There's a knowing. You can see the dark wisdom in their eyes. It's like a "you had to be there" conversation. Do you get the... And then the... Oh! And sometimes.... And have you ever?.. It's like meeting another member of a fan club, only it's a fandom that no one wants to be a part of!

This illness has made me into someone that I don't like, and that I have trouble admiring. I wanted to take a dream opportunity of being a live-in nanny for a friend of mine and her two wonderful daughters, and I just can't. I'm lucky for the time I can spend with them. I am in no way, that level of reliable, yet---to be able to care for children. It breaks my heart. I don't get to be the woman I want to be. I only get to be the woman I can be. I'm going to have to let what I want, go. I'm going to have to figure out how to be a woman I can be proud of, anyway. And like before, it's going to take seeing my situation in a new way.

So I've got to reshuffle. I've got to change things up to make things work. I can't judge my life now based on how I used to be able to live it. That's just not fair. But, in a way, I don't know that is fair. In a way, the only one who can determine whether I'm actually living up to my potential is me. And I'm not always good at being honest with myself.

That leaves me with only one answer.

FORGIVENESS

I'm going to have to allow myself a lot of mistakes. I'm going to have to eat crow, and worms, and bite some bullets. I'm just going to have to be okay with the fact that I suck sometimes. Sometimes you're an all-powerful wizard. Sometimes you're just a guy in a funny hat. But I've done this before, when I didn't even intend to. I've been able to turn my situation around and find the good in it, even with everything it threw at me. I stopped worrying about me, and started worrying about other people. Now that I've changed my focus, I'm not alone... Now, the fight isn't just about me... Now, I have the courage to stand up and lead the charge again...

Deal the cards. Let's play...

On the other side of madness (Part 2, Depression)

I'll admit it: I'm nuts. There are times when I absolutely cannot sync my view of reality with what is actually going on. I get a soul-crushing depression that tells me I am of no value, that I am actually a detriment to those around me, and I'm completely doomed. When it's going on, I'm a sobbing, inconsolable mess. If you approach me with an attitude that's overly enthusiastic, I'll even get mad at you for being too optimistic! How dare you not see how terrible everything is!! I'll plan out my suicide, short of taking any action, and each step I need to take for my desired outcome (fantasies about letters of explanation that this is my own stupid will, and no one's fault). I'll argue with myself in my head with myself about what I'm thinking, because I know this is a temporary lapse of reason that will eventually pass... I know I'm being irrational while it's happening. The voices in my head yell back and forth at one another like some debate on the floor of the House of Commons... Yeah... that's nuts.

I don't mind it so much once I get to the other side of it. It could be a lot worse. I could not have that little voice of reason in there that's able to step back and see, and argue for holding on. I could actually believe the doom and gloom in my head. I could believe I was justified in spreading my misery around. I could have the possibility of not reaching an 'other side.' Oh, yes... things could be much worse. When I do get to the other side, it's like a storm has passed. The calm is deafening. The stillness is eerie. Weren't we just holding on for our lives a few moments ago, hoping the house didn't fall down around our ears? Now it's blue skies and chirping birds... how did that happen??? Ah, the joys of faulty neurotransmitters.

There are a couple of things about this, beyond my own suffering, that bother me. One, why isn't there a medication for the treatment of acute severe depression? Long-term antidepressants help raise the day-to-day functioning, but they do nothing for acute episodes. The best we have is tranquilizers to make people so blotto we don't hurt ourselves or someone else. But that's not a treatment. That's a last-ditch effort! Two, how do I seek treatment for acute episodes without getting the stigma that I am irrational and incompetent---someone not to be trusted? I'm not nuts all the time. Just every once in a while. I'm aware that it's happening. I'm not completely delusional. I can be reasoned with. I'm just really, really sad. Take care of the sad and I'll be right as rain again.

We've separated the medical from the psychological. My mental health counselors love me. I'm a great communicator. I'm self-analytical. They know I've got a better handle on this than most. I'm a big girl. I know that feelings aren't facts, and I want to be responsible in my behavior. I have self-care practices that keep me safe for the most part. But sometimes, what I can do at home just isn't enough. I need the help of a professional. I don't need a psych ward. I'm not out of control. I just need something to turn off the stupid, destructive voices in my head. I know they'll go away eventually on their own. But I've got to be able to hang in there until then. That's difficult sometimes. We don't have anything available for that in our medical arsenal, and our doctors don't get training in how to deal with episodes like this. Once it's a mental health case, they'll wash their hands of the patient entirely, even if there are underlying biological problems. Doctors don't do wackos. That's the head shrinker's job.

So instead, I sit and sob at home, one side of my brain lamenting that everything is awful, and the other side of my brain going, "We've been the most successful recently than we have been since this started! Your doctors are listening and helping. You're to the point where you can do some physical therapy! People love your words! Come on, girl... things aren't that bad!" Meanwhile the other side of my brain cries, "But we've lost everything we loved in life! We can't do anything that brings us joy like before! It's all ruined!! I'm ruined!!! No one's ever going to love me! I'm broken and should be left out for the wolves!" (I'm spectacularly good at beating myself up....) Once the storm passes, I can sit and calmly say, "Yeah, $#!+ sucks... But we've done more with less. This is going to be difficult, but it's not impossible..." I am fully aware that the bad voices in my head are not truthful. They can still incapacitate me, however. That I don't like.

How do I help the storm pass? Sleep. Lots of sleep, showers, and not doing anything that requires making a decision. When my brain is out to get me, I will sabotage myself in a heartbeat. I will do something to make the situation worse, because I feel that life should be awful. And that's crazy! I know it. So I don't allow myself to do anything important. It's just a bad idea. It's better to just hermit for a while and try not to do anything (especially interacting with others!).

I'm lucky in that these episodes only last a few days at most, then I can pull it back together. If they were longer, I'd have to do some serious re-evaluation of my mental health care. Right now it's the equivalent of PMS, and that's something I can manage on my own. Still... it would be terribly nice to have a treatment instead of just coping mechanisms. It would be nice to be able to just brush off my shoulders and keep going. Sadly, that's not an option yet. In the meantime, I'll ride these Moments out as best I can, and just get back to business on the other side.

(Part 1)

Fall down go boom (Part 1, Depression)

Right now I'm real shook up because it's been a terrible day. This was supposed to be an entry for a blog carnival "share posts about successful treatments/procedures that have helped make your life better" hosted by the lovely, Jennifer Pettit at Understanding Invisible Illness. Ironically, my invisible illness got in the way. I'm in the thick of it. It's damn near impossible to be positive. Everything is wrong. I'm wrong. And I'm trying to find my way through anyway.

I feel like I can't win for losing. Any little progress gets wiped away with the next wave of symptoms. I can't go out for a night of fun without it costing me the entire next day. I wasn't even rambunctious. I didn't even try and dance for a whole song. Only a minute or so. I was fine. I made it home. I got to bed. And then a few hours later, I'm springing from sleep like the devil is on my heels to make it to the bathroom before I throw up on the floor. I manage that, get back to bed, only to be woken up in another few hours with the explosion of pain behind my left eye. I carefully get from bed, take out my contacts, and take my medication. I turn on the shower as hot as I can stand, but I sit in the tub because standing just takes too much strength. I let the water splash on me, trying to distract my central nervous system with white noise. That way the explosions going on in my head don't hurt as much.

I crawl back into bed, only to be awoken (this time at a human hour) by a series of esophageal spasms that make it feel like my throat is choking itself from the inside. The pain extends from my jaw, down to the top of my stomach. When the spasms hit there, it turns into waves of nausea. I turn on my back massager to beat the muscles into obedience or exhaustion, I don't care which. I just have to make the pain stop. Nothing else matters. My life doesn't matter. My friends don't matter. My loves, my self... nothing matter but making the pain stop. The world disappears and I am helpless to the pain. It grips me and I am its slave. It's terrifying. It's helplessness like nothing else. My own body---the vehicle for my dreams---isn't a safe home for me. I pray for loss of consciousness just so I can get away from it for a little while.

When I feel better, I try to be responsible. Sometimes I sabotage myself (don't do something I know needs getting done) because I want to be a selfish brat. It's difficult not to feel sorry for myself after going through something like that. I don't wanna put things back in the right place. I don't wanna clean up my mess. I don't wanna finish hanging up the clothes. Pouty, stompy face. But I also don't want to be a five-year-old, so I do what I can and excuse the rest. I have to cut myself some slack somewhere. This is a hell of a lot to deal with. No one has a guide book. No one can tell me what to expect.

This esophageal spasm? Totally new. About a month old now, present on a semi-daily basis, so not just a fluke. I do the research. Not much is known. There are three treatments. Two I can't take and I'm already on the third. (This is all information from reliable places like the National Institute of Health and the Mayo Clinic.) It's probably connected to the other nerve damage I have. But it's new. It wasn't there before. I have improved so much in the past two years in my battle. Yet I'm getting worse. The symptoms are expanding into new areas of my body. More vital areas of my body. It's not just my hands and feet anymore. It's in my chest, in my throat, in my ability to swallow and breathe. The pain comes on and all I can do is react. There is no choice. There is only fall down go boom.

And when I get in this place of pain, I remember how bad it was in the migraines. I remember walking through my house, blind, because using my eyes just wasn't an option, it hurt so much. Years of agony. Over one thousand, six hundred days. One day of brutal, crippling pain, right after the other. I don't know that I have the strength for that again. And it's so easy for my body to return to that place. Additionally, it seems to be heading that way regardless. There was nothing I could have done wrong to cause these esophageal spasms. It's something my body it doing on it's own. It's not punishment for misbehavior. It's just punishment. You'll excuse me for sounding like a teenager, but it's not fair.

When medicine works, it is a miraculous, wonderful thing. But there is so much we don't know, don't understand, and don't know how to treat. Our best just isn't good enough. We try. There are scientists out there diligently working to find solutions to these problems. There are great minds who have dedicate their lives to delving into these mysteries. And there are the medical professionals who have to work the messy seam between scientific theory and what actually happens in the real world. Not everyone gets a happy ending. Not every medical mystery is solved. We can stick a big fancy name on it, but that doesn't mean we understand it or know what to do about it. Not every treatment works. Sometimes there is no treatment. In the real world, bad stuff happens to good people.

I want what other people want. I want to find fulfillment and have joy in my life. I want to be able to brush my problems off my shoulders and grow stronger because of them. I like hard work. I like challenging situations. I like having choices. I don't like it when there's nothing I can do. I don't like it when I'm at the mercy of my body. I don't like it when the things I used to love to do get taken from me because I have to baby myself like some delicate flower. I really don't like it when I don't even have the option to think about where my life is going because the present moment is too pressing and demanding. Living in the moment is not all it's cracked up to be! I like having a future and a past too.

I'm gonna make it work somehow. I get through these days somehow. It's not always graceful or pretty, but I get it done. I'm going to keep going to my doctors and working with them. I'll do the treatments and take the drugs. I'll perform the exercises at home and go to the gym for physical therapy. Anything I can do, I will try, because staying in this is just not an option.

(Part 2)

Batmanning for health?

You may be familiar with the internet phenomenon "planking" where people take strange pictures of themselves acting like planks. Well, someone got the bright idea to up the ante and they called it "Batmanning": hanging by your feet like you're a bat. My doctors have now prescribed this for my kidney stones. However, I don't have to go to strange places and take pictures of it, but they want me hanging upside-down! Apparently I haven't been doing enough head-stands in my workout... Why they didn't cover that in grade school P.E., I don't know. I think I should write my congressman.

All kidding aside, they really do want me to do upside-down exercises. Here's an illustration of a kidney. The tube that enters the kidney is the ureter. It divides into branches, and two of them you'll notice point downwards. That's where my kidney stones like to form, just like this poor fellow in the picture. And like babies, kidney stones like to move around, flip over, and all sorts of other fun stuff, which in turn causes pain. They are far from smooth, like the one pictured here. No... these stones are sharp little buggers.

My kidney stones are calcium oxalate. But their either di- or mono- and we're not sure which. Since they've now been pulverized into itty-bitty pieces, I can safely pass them without pain, we can collect them, have them looked at in the lab, and then see if there's anything we can do to keep this from happening again. Below is a picture of a calcium oxalate stone. This one is 20mm wide (2 cm). I had two that were 7mm each. Larger than 5mm and the body can't pass them on its own.

How would you like one of these inside of you?

I'm supposed to drink a liter of water, wait a half an hour, hang upside-down for 30 minutes, three times a day. I have trouble remembering how to eat three times a day! So I'm going to rig my bed to be at a slant (another option), but that runs the risk of causing a headache in my sleep. Sometimes there are no good choices, only choices. lol

So more home medical care, including one crazy internet fad, keep up with my water with a dash of lemon (for the electrolytes), and back to the doctor once the analysis is done. The GOOD news is, all the other stuff I was putting on hole (botox for my migraines, a new health shake) I'm now free to get back to. I've decided to put a positive spin on this whole thing by declaring: "I'm magical! I can make rocks with my body!!!" lol

Make it look awesome, baby... make it look awesome. :^D

[Edited to add] No I don't think it helped. The main thing anyone needs to do is drink lots of pro-kidney beverages.

When everything falls down, it's an opportunity to rebuild

Ishvari - the Hindu Goddess of Never Not Broken

This one is kind of long, bear with me... I've noticed a lot, with myself, with the people I've counseled, that we have a tendency to rush through solving uncomfortable problems. It's not just habit... We came to this process for a reason. It makes for a quick resolution so our lives don't have to be interrupted horribly. We tend to forget, however, what we're feeling in the first place. We simply say, "I'm feeling X. X is bad. I need to stop feeling X." Wham, bam, problem solved, right? Except that we've forgotten one key step (and I forget this all the time too...). We forget to check to see if the feelings are reasonable, if they're warranted, if it's not just the feeling we need to solve but that there's a larger problem going on. "I'm feeling pain. Pain is bad. I need to stop feeling pain." This can quickly turn into managing a symptom while a larger problem (the one causing the symptom) festers and grows into a crisis. This is true for both physical and emotional feelings.

The one where this stands out the most is fear. "I'm terrified. Terrified is bad. I need to stop feeling terrified." Sure. I agree. But let's also stop a minute, after the terror has been addressed, and look at what got us there in the first place. What caused the feelings of terror? It may be perfectly reasonable. They may not be constructive feelings right now, but we didn't get to this line of thinking because we were delusional. We got there because we've had bad experiences in the past, and this one is starting to look just like that one, and OH MY GOD GET ME OUTTA HERE!!! WE'RE ALL GONNA DIE!!! This is usually diagnosed as Post Traumatic Stress Disorder (PTSD). They call it a disorder, which by their book is true. But that doesn't mean it's bad. We obviously survived that god-awful situation that made us twitchy. We did something right... Is that really a disorder or the voice of experience? So who am I to say that you're not exactly right that this situation looks like it's heading that way? But is that actually where it's heading? Are we sure?

If we drop a brick from a 60-story building, does it necessarily hit the ground? No. It may hit a balcony on the 32nd floor. Someone could stick their head out the window at just the wrong time. It could land on a truck driving past before it hits the ground. Just because the brick is falling, doesn't mean it hits the ground. Just because I know it could go hell-fire-fury bad, that doesn't mean it must go that way. And even though I see the possibility and the possibility terrifies me, I need to remember that I'm not going into this, without experience and wisdom. I'm a medical veteran. Some folks are actual veterans. We've been the dark places, have been broken to serve a horrible necessity, and come back to try to fit ourselves back into normal society, where people can't even imagine what we've seen. That's lonely. But you're not alone. You're elite.

Much of the problem I see is that we don't always recognize our successes. We take our successes for granted: why keep working on it if it worked? On to the next one. We remember the failures: if we're going to avoid it in the future, we've got to beat ourselves up right good so this never happens again.... That can easily lead to a lot of sleepless nights and poor self-esteem, quickly. Mommy clapped and cheered the first time we tied our shoes. We were so proud. Do we still clap and cheer each time successfully tie our shoes? No... we've got this one in the bag. We're an old hat at it. No need for praise, I know I'm a champion shoe-tier. It's when I'm not sure of my skills that I want the reassurance and the recognition.

I don't want you to hear, "I'm sick! I'm sick! I'm sick!" all the time. I want you to hear, "I'm dealing with something new and scary that even my doctor, the professional, can't tell me about very well... I'm scouring the internet because no one can tell me what's going to happen to me, and everything I thought about the world has been turned upside-down!" But that's a mouthful, and it took me over a decade of research to realize that's what I've been trying to say this whole time!

And though it may be silly, I've taken to rewarding myself, like I was when I was a child, when I'm able to do things that I normally can't do because of my illness. I'll clap and cheer, by god. Yes, I was an old pro at that... under healthy body conditions. But now I'm going at this on the expert difficulty levels, so there's going to be a learning curve again. Things aren't going to come as easily. It's going to take more work for less payoff. In some cases, I'm going to have to come up with an entirely different game plan, test it out, and find what works by trial and error. So it's doubly important that I recognize what an achievement it is. It looks the same as the million other times I've done it, but the experience is not the same. Getting through it wisely is what makes me mighty.

Comparing me to a healthy person just isn't fair. To the healthy person! Sure my young friends can run around and hike and zip and play on the mountainside. But they crash for naps afterwards, while I paced myself and could enjoy the whole day. I'm also an expert at functioning when I feel like crap. Their first instinct is to fall out. Mine is, "yeah... what else is new?" So as they sleep, I'm able to have the place all to myself. It goes back to the old Einstein quote: "Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid."

Sure, based against most human activities, I'm no good at those. But put me in my element, and just watch me soar. I never lose my abilities to handle a crisis or keep going when it gets tough. They sleep most of the time, because "my element" are moments that don't come often, and thank goodness for that. I wouldn't want everyone living in my element. That's just too rough. If my being sick means someone else doesn't have to go through this, I'll take one for the team, no problem.

Too often I think we forget this big picture. We forget that it's reasonable to feel scared and abandoned and inconsolable and all that... Just because we'd rather not have those feelings doesn't mean they're always something to be avoided. Sometimes they're things we need to embrace as part of the process. They're important feelings, and they're uncomfortable so we'll take notice of them! But these bad feelings don't have to be the end of the story. They can be a simple chapter in a long book that ultimately ends up well.

All heroes go through hard times. But because we're the audience, it's easy to say, "Hang in there! you can do this! Success is right around the corner!!" But we're not in it. We're on the outside. It's a different story when we're trying to be the hero, and it all looks lost. It's easy to lose heart in the fight. Because some days it difficult to tell if we're in a tale or triumph, or a tale of tragedy.

It's okay to feel scared, hopeless, abandoned, etc. It might not be fun, but it doesn't mean eminent death (I hope!!). What we can do is slow down and take a look at the feelings. What started me feeling this way? Why am I anticipating that it's going to be like I'm imagining? Where's my evidence? Okay, which of those pieces of evidence are valid, and which are not? Which are pieces of evidence that could possibly mean more that one thing, that I need to watch and get more information on? What could possibly change to steer this situation in a new direction? Can I make adjustments to help the situation have a more positive outcome than the time that scared the bejeezus out of me? What are my options here?

What we may find is that we're absolutely right! We have been abandoned. It is a hopeless situation. We are scared out of our minds with good reason. But that doesn't have to stop us. So we've been abandoned. That doesn't make us unworthy or unlovable. So it's hopeless. That doesn't mean we don't give it our best shot anyway! So we're scared out of our minds. It's SCARY. You're having a human reaction. That's normal and okay. It's what you do with that, that counts.

The abandonment may have had nothing to do with us at all! Sometimes it happens, and it's sad. The one the you wanted with all your heart may have abandoned you, but they may not have been able to see a good thing when they had it. And if they can't appreciate you, why bother? The abandonment may have been a gift. Or the abandonment may be temporary: the other person needs their space because they're overwhelmed and they need to leave. Sure it hurts. Absolutely. But we keep ourselves. We can help that hurt go away. We can give to ourselves what we wanted them to give to us, and in that way we're able to get our needs met enough. Abandonment comes in all forms. Whatever the form, the answer is the same: Use that time to nurture ourselves so that we can be ready, whatever the future brings. Yes, we're lonely, but we can remind ourselves what we love about ourselves, and in that way remember why we're worth being kind towards.

We may find ourselves in a hopeless situation. There are plenty of medical mysteries that baffle doctors and end up as tragic tales of suffering and death. If you were sick with one of these diseases and not depressed, I would wonder what's wrong with you. It's normal to feel upset about being sick!! Good lord, you "normal" people have no idea how much you whine when you get sick. You think we whine? Dear lord... If I had a tape recorder, you'd sing a different tune! Lol. I see it in my Facebook news updates. The chronic illness folks only complain when it hits epic levels. Healthy people complain at the first sign of symptoms. "Sniffles and sore throat. Oh, man, I hope this is just seasonal and I'm not getting a cold." Compared to, "Had to go to the ER again last night. Thankfully it was only a 4 hour visit." It's two completely different worlds. You can't compare the two situations or even call them similar. So we shouldn't berate ourselves, on either side. Don't judge a fish on it's ability to climb a tree.

We may find ourselves inconsolable. That's okay too. There is something to be said for allowing ourselves a complete and total breakdown. Sometimes, we just hit our limit and have to stop and rest. When we do, all the emotions that we've been pushing aside because we've been trying to Get Stuff Done, come rushing to the surface. We break down. We feel weak and vulnerable. We may feel, because of all this, that we've failed or we're not up to the task. This isn't necessarily true. It may just be that we've hit our limit and need to rest. We need to take a break and concentrate on something else for a little while, because we're frustrated, feeling hopeless and trapped, and it's driving us crazy. None of that means we're weak or inadequate. No one can stand on the shore and hold back the tide. If you judge a fish be their ability to climb a tree... It means we're human animals and we just found our threshold! Like the govenor on a car engine, we can press the gas all we like... the car is not going to go faster. It's okay to allow ourselves time to stop, rest, think things over without pressure, and try again later. Life and love are marathons to be endured, not a race to be won.

Too often, I feel, we find ourselves in these situations where we're overwhelmed and trapped, where we've run into some life problem that no one could handle but we have to anyway... and we end up feeling miserable at ourselves. The situation was traumatic. So our brain holds on to it, ruminating and going over the scenarios again and again in an effort to try and keep us safe. It's obnoxious at best, and life-crippling at worst. We need to protect ourselves from that ever happening again!!! And because we felt couldn't protect ourselves, couldn't protect our friends and family, we end up feeling like we don't deserve to live. We feel like a failure as a human being. We feel like because we didn't feel brave, strong, or powerful, that we can't handle it it if happens again. This isn't true.

Just as bones can be set, mended, and made strong again, so can our sense of self. We will never again be the person we once were (neither are bones after they're broken), but that's okay. We made it through. That situation wasn't the end of us. And that situation may define us, but we get to choose the definition. Broken? Sure. I'm never not broken. But there's a Goddess of "Never not broken" and she seems pretty cool to me. She rides the back of a crocodile, and she is a warrior goddess. Like the line from the Modest Mouse song, Dashboard, "Oh, it should have been, could have been worse than it had even gone...". The things that I have been through should have ended me. But they didn't end all of me. This is an chance to create a new me that's more of what I like and less of what I don't like. When everything falls down, it's an opportunity to rebuild.

We are at 100% Awesome!!!!!

Thank you to everyone who donated!!! My trip to Seattle is ON!!!!!!!!!!!!!!!!!!!!!!!!!!

Faith in sickness and pain

When we talk about faith, it doesn't have to be about the divine. Regardless of what faith your are, or if you have no religious faith at all, a chronic illness can really test your beliefs. I'm on the fence as to whether there is a God, or gods, or whatever. But that doesn't mean that I have a lack of faith. Faith is still fundamental to human existence. I see faith as the absolute confidence that something is true, even if it hasn't come to be yet. Faith to me doesn't even have to be spiritual. It can be faith that the electricity will work (the bill is paid). All types of faiths get challenged in sickness and pain, and there are several ways to respond. I choose to respond in the way that best benefits the situation.

I have faith in humanity, and faith that people are basically good. Do I know that stranger is good? No... But I believe they are until they give me proof otherwise. If that stranger proves to be shifty, I have all sorts of countermeasures I can use to protect myself. However, when it comes to my faith in my friends, I get evidence that could be seen as "otherwise." Getting sick isolates me from other people and makes it difficult for people to want to visit me. We have a strange aversion to illness and injury as a species. I've seen it happen to myself, to friends of mine, and in other cultures. Sickness and injury, at a primal, subconscious level, are a sign of weakness and something to be avoided. Going really, really primal, it means that you're likely to be picked off by the wolves. Other people will stay away because of that, and not realize they're doing it for that reason. That can really test my faith that people are basically good. We would all like to think that if we got sick or ill, people would rally around us, tend to us, makes us better and bring us back into the fold. But generally, that's not how it happens. I know there is the urge in me, if I can get better/when I do get better, to just leave this all behind and never talk about it again. Go back to "normal" and leave this in the past. I doubt I'll do that (I know too much to forsake those I'd leave behind), but the urge is there. So in this case, my faith is convenient and sometimes contrary to evidence. I will lose faith in that stranger the moment they make a untoward movement. I will keep faith in my friends even with evidence to the contrary, because I prefer keeping my friends.

My faith can be faith that my body will be in similar condition tomorrow as it is today. It can be faith that the floor will be there when I put my foot down. It can be faith that what I'm feeling is real. All of this gets thrown on its head in sickness and injury. Where I think the floor is may not actually be where the floor is. What I'm feeling, whether physically or emotionally, may be a complete fabrication of my nervous system and have nothing to do with reality. And when I wake up in the morning, it may be in a condition that takes me completely by surprise. It's very difficult to wake up and immediately be able to tend to some dire bodily need. And by dire, I mean things like vomiting, severe pain, and what I affectionately call the "splodie butt." But I have faith that my body will work anyway, because it's useless to stay up worrying---which will make me sick---over the possibility that I might be sick. I have no faith in my feelings. I always doubt them and test them against reality. I have neuropathy and PTSD. I know my feelings and sensations are often wrong. I have faith that the floor will be there. I'm not always right, but I'm good at managing the fallout when I'm wrong, so I don't mind keeping that faith.

I have faith that time will eventually change things for the better. Does that mean I'll survive long enough to see that goodness? No... But I believe it could be right around the corner. That's good enough. However, when things start changing from bad to worse, this really comes under fire. At some point, everyone starts to wonder, "Just how long can this go on? What did I do to deserve this?" Limits are strained, broken, or downright obliterated. That can easily be seen as evidence that things are not going to get better soon enough. But I've got to hold on to that faith anyway because the alternative is worthless. I want to be someone who fights until I'm absolutely overwhelmed. I've been at that point where I was so sick I didn't know what was going on, and a team of doctors was fighting to keep me alive. I have sworn to myself that no one is going to be able to say I gave up easy. If my death is anything, I want it to be respectable. And I have faith that I can keep that promise to myself. Is that true? Who knows!? And it doesn't matter. The faith is what's important.

Do I have faith in a benevolent spirit that has some concept of sin and holiness? I don't know that that's true. I do, however, have faith in mystery. Some things work out and we have no idea why. Some things don't work or work only sometimes and we don't know why. There are some things that only work when we're not looking at them and we don't know why. I have faith that there are bigger and stranger things out there than my little mind can comprehend. Could that include a benevolent spirit that has some concept of sin and holiness that is watching over me? Sure! But does it matter? If it matters to you that you go to Church/Synagogue/Mosque, then it matters to you and that's good enough. Me, some days the ritual of prayers helps. Other days, I think if there is such a Higher Power, we're going to go a few rounds before this is all over (so it's more comforting at such times to think such a being is impossible). Some days I think this is all there is. Some days, it's downright spooky. Here, my faith is complicated, complex, and I'm not even sure I understand it myself!

So faith can take many forms, it can wax and wane, and it can be clear as mud sometimes. It's still a human activity that we all engage in. It can be mundane or divine, metaphysical or physical, and everything in between. Injury and illness, pain and sickness, will test faith in a number of ways. We struggle to hold on. Sometimes, we find we have to let go. But I try to do so in ways that enhance the situation rather than make it worse. Sure, that means biting the bullet or dealing with upsets, but that's life, right? We pick ourselves up, have faith in a number of ways, and keep going. How's your faith today?

Why dwell on failure?

"I've set my teeth," is an old family saying meaning: to decide with amazing stubbornness. I may get knocked down. I may wail and despair for a moment or two. Then I set my teeth, figure out what's next, and get on with it. I refuse to spend my life feeling sorry for myself. It gets me nowhere. Yeah, it's bad. But I've gotten over that. It's old news. It was terrifying at first. Nowadays, the story is boring. I've told it a million times. Yes, I have a rare and complicated condition that makes living very tricky. But, I'm living aren't I? I can still contribute to the world in a meaningful way. I may accomplish that in a completely unorthodox way, but there is honor in being a trailblazer. This is certainly not what I thought I'd grow up to be. But what it has turned out to be, I'm making the best of.

We're taught in school that getting the right answer is the all important thing. The kid that fails is the dummy, the slacker, the good-for-nothing. There's a right way and a wrong way and the wrong way is to avoided at all costs. But that's not how the real world works. In the real world, often there isn't a right answer. In the real world, sometimes failure is the best thing that can happen. In real world stories, they all run essentially the same way: "I thought this one thing was going to happen, then something completely different happened, and it all turned out like this."

I thought I was going to have my career, get married, have kids, deal with the problems of parent teacher associations, deal with other soccer moms, get divorced, and figure out how to be an awesome single-parent household. Maybe getting remarried later down the line when the kids are older. That seemed probable to me. Getting disabled at such a young age as to be considered "Retired" by the Social Security Administration (and having the body of a retired person to match)... No... I never did think of that being in the cards. Who would?? I had dealt with a 3 year knee injury as a teen. I was no stranger to chronic health issues. But I figured every problem had a solution, right? No... there are still plenty of mysteries out there. We know oh, so very little.

These days, I've learned to linger on the failures just long enough to figure out what went wrong. I take responsibility for my part, but I don't beat myself up about it. Failure is usually memorable enough without additional self-abuse. I figure out the past, and move on. Sometimes I need a rest, so I can find a new approach for the future, and then go again. If I'm set on my goal, I try to exhaust all available avenues, and make new ones if I have to. Time will also present opportunities that didn't exist before. And I don't have to have faith that it will all work out, because that's not the point. The point is doing the best with what we've got.

As children, we have dreams. Then, as we learn, we see how our dreams were unrealistic, born of ignorance, and need some fine-tuning if we actually want to make them come true. This happens time and time again. We think one thing, then we test it against reality. The outcome may be a total surprise, or it may be what we expected. Most of the time, it's a mix of both. We take this new information, we think new thoughts, and then we test those against reality... and so on. The right answer isn't what's important. Knowing what to do when we get things wrong is.

However, we don't teach what to do when things go wrong in our schools. We say: study, memorize. If you're wrong, you're a failure and need to be held back until you can get it right. But in the real world, sometimes that's impossible. I mean, yes, you can study your little heart out and memorize all sorts of things. But sometimes, we're in an area where there's little study and we don't know what's right from what's wrong. Sometimes, we're in a situation where there is no right answer. And sometimes, the answer doesn't matter so long as it works.

I set down certain principles for myself: I must do my undertaking legally and honorably, because I like being able to sleep at night at look at myself in the eye in the mirror. After that? It doesn't really matter. It may take a long time. It may take multiple efforts. It may take an unorthodox route. (Can you imagine having your holistic doctor calling the ambulance to take you to the western hospital? That was my first clue...) But this isn't for a film crew. I'm not on a reality TV show. I'm just a gal living my life. That's messy sometimes. This isn't about perfect, so it's not about failure either. No one is handing out a report card at the end of my life.

What matters is, after my principles are met, am I okay with how I'm handling my life? Do I really need to be doing what I'm doing? Do I need to be doing it in the way I'm doing it? How does it matter to me? I'm the one who has to suffer the consequences, so these decisions are my responsibility. And yeah, I'm willing to bite the bullet that sometimes, I'm going to screw up, things are going to go wrong, or the unexpected will happen. That's life! There is no deserving or not deserving in there. It's only in story books that wizards appear to tell you you're the chosen one and here's your life's path. In the real world, most people make their life path by just setting off in a direction.

So if it's not about right and wrong answers, but results... And if it's also not about deserving or not deserving, but getting the job done... What is it I want of my life, that I think is attainable? Let's go for that. Is it going to be scary? Absolutely! Are there going to be hard times? Like we can't imagine. Are we going to encounter failure? For sure. But all journeys have these things. You'll have that on a job this size. Every great success has a heap of mistakes in its past. So why dwell on failure?

Opioid Narcotics!!! Why have you forsaken me?!?!?

I can't take narcotics anymore, and it's not for all the reasons we see in the media. Here I thought it was just a matter of communication and proving myself a model, responsible patient. I could get the narcotics, return to work and get on with my life. The best laid plans of mice and men often go wrong. I got the communication down. I proved myself a model citizen. I got the extended release morphine pills.... and they're worthless!! I can't be on a medication that makes me feel like I have the flu if I decided to sleep in on a Saturday morning.

The problem is if I don't take it at the same time every day---that means weekends, holidays, days with the flu, zombie apocalypse, it doesn't matter... If I don't take the medication at the same time every day, I get withdrawals. I'm on a baby dose compared to what I took back in the day for my migraines. I used to be able to go a few days before I started getting withdrawal symptoms. Not anymore. Now it's hours. If I get food poisoning, stomach flu or a bad migraine where I can't keep a pill in my system, I'm screwed. I'm trying to make my body more reliable. Not less reliable. So now, the payoff is not worth the price. This sucks!!! I refuse to start my mornings shivering in cold sweats. I remember now why I took myself off these damn things as soon as we had fixed the migraines.

It's ironic to me that doctors would keep such a safeguard on opioids. Right now, everyone acts like they're this siren's song, that once you taste of the forbidden fruit, you'll never want to return to the shores of reality... Dear lord, opioids are not that wonderful!!! They don't imbue me with a sense of community and family. They don't fill me with a feeling of purpose. They don't give me a sense of self-esteem. They're a tool that allows me greater access to my body so I can achieve those other things. And unfortunately for me, they're a lousy tool at that.

Last night I dreamt that I was running my own little cafe/bakery. I was dealing with customers, shipping and stocking, arranging the little cupcake treats in the display case. It's an old childhood dream of mine that I sometimes actually dream about. All mundane. And wonderful. Because it's with none of the thoughts that I normally have to have to get through a day. When I dream, I always dream of a not-sick me... a not-in-pain me... a me that isn't suddenly surprised by physical limitations or symptoms. In the dream, when I want to do something, I simply do it.

I woke up to a body that was not my own---it belonged to the symptoms. There was no deciding what to do with my morning. It had already decided for me. I was going to have muscle spasms in my throat. I was going to alternate between feeling like I'm starving and feeling like I wanted to vomit. I would go from boiling hot to freezing cold and back again in moments. I was going to shake. I was going to be irritable and self-centered. I was going to be miserable, until I'd swallowed the right things, did the right stretches, took a shower and all the other things my body demanded, first. I am not going to wake up like this ever again if I can help it.

I may never get back to a place of wellness again. My life might always be complicated health-wise. I'm strong. I can take it. But I'm not about to be making a situation worse. I'm no fool. And it's plain enough that for me, at least, opioid narcotics are not the answer. Not at this time. Not for these reasons. I simply have to find another way. I have to wait for the science to evolve, a new drug or therapy developed, something... I'm going to go back to the pain clinic and let them know that I don't want opioids.


Back to the drawing board.


Edited to add:
It's absolutely the narcotics. If I try to sleep in to rest, my body turns into feeling like it's on the surface of Venus and on the continent of Antarctica, all at the same time. The second these damn kidney stones are out, I'm off these things. Done.

Added March 6, 2012
Spoke with my GP and we're going to change around how I just my medication. The Ultram is going to be for break-through pain, instead of all day, and I'm going to see if switching that behavior and keeping the extended release morphine cuts down on the withdrawal. It is helping, so he wants me to try this. Neither of us wants me to go any higher, so I can try staying off the night time dose. However, if it's still a problem, I can come back in and we can discuss things further.