Right now I'm in "anger" and possibly "denial". I'm so pissed off at what I've lost, what I have to deal with, what I must endure… I'm just sick of it. Honestly, I'm SO over this.

I continue to deteriorate, despite my best efforts. I can't remember what it's like to have a normal, healthy day. The last time I had a day that I could consider "good" (read: less pain than usual, no limping and stiffness, no flu like symptoms to speak of) was… the 2nd week of April. The weekend that my friends came and cleaned my house for me.

I keep racking up new symptoms, tallying up the worsening of existing symptoms, and I continue to battle the medical system for appointments and diagnoses and whatnot. I am very pleased with the pain doc I finally found, and I think it's going to be a beautiful, long-term relationship.

But seriously… I just have this deep seated anger that I can't shake. What I'm going through isn't fair, it isn't right, and I'm just too young and generally amazing to be incapacitated so! There is so much that I could be doing to better the world around me, but what am I doing? Lying in bed, posting inane things on Facebook, and sleeping (or not). I feel like my life is being wasted, frankly… and that pisses me off. 

I had such promise, such dreams, so many talents, and they are being wasted. I don't feel like I'm contributing anything of worth to the world, or even the relationships that I hold dearest and closest. What do you do when you feel like your life has lost purpose and meaning? When you feel like you have lost purpose and meaning?

It's like… I still have these shreds of rebellion and hope that refuse to die out, but I'm not sure how to feed them right now. I'm just so… lost. I realized the other day (or was it today?) that even when we get my pain under control and some/most of my symptoms managed and handled… I will never go back to "normal". I guess I've been holding on to this fantasy that when I can finally get my pain managed that everything will stabilize and that I'll go back to being the same bouncy, energetic, productive person that I used to be. It's finally hitting me that my life is forever altered. I have no idea what my future looks like-- will it be full of the same untold suffering, day in and day out? Will I ever have a recovery to speak of? Am I going to spend the rest of my life just surviving?

Hell, I don't even know how to adequately articulate all of this. I can't explain what I'm feeling, because I really don't understand it myself. I just know that I'm angry, very very angry, and very sorrowful. I worked so hard to come to like instead of loathe myself, and now here I am again… I feel like all of my hard work has been undone, because I really don't like the person that I am right now. I mean, I like who I am inside well enough, I guess… I'm okay… but I hate the life I have now. I didn't choose this, I didn't ask for it, and I don't want it. Why me? Like, seriously, what the fuck?!

I'm also super pissed off at what this has done to my marriage. We're making it work, and we definitely love each other and all that jazz, but honestly it's hard. Marriage and relationships are hard to begin with, especially when you've got the baggage that I do, but with all of this chronic illness shit on top of it? It's like the odds are stacked against me so high and rising that I can't help but feel I unwittingly made an enemy somewhere who's in charge of all the cosmic, circumstantial shit. I hate how stressed Drogo is, I hate that the stress has killed our sex life, I hate all of the bills piling up and how inadequate it makes him feel when it's no fault of his own at all (and when he's actually borne up under this remarkably well!), and I hate being "that couple" that always has to ask for help from everyone around them. I hate that we don't have many friends, that we can't go out and do fun stuff, and that it's just such a struggle for so long. We have this morbid inside joke that we're ready for our sunshine and rainbows now! Any day, really. lol. But it's the truth. This is just so hard, on so many levels, and I'm sick of it. It's hard enough to have all of the sensations you experience be unpleasant ones day in and day out, but on top of that there's all of the emotional agony and stress to just exacerbate things.

I also hate that I'm fat now. Yeah, yeah, I'm still attractive, blah blah blah, but I'm over 200 lbs now. I have never been this heavy in my life, and it pisses me off to NO END that I try to eat well and I exercise as I can and I got off of the stupid meds that were helping me to gain weight, but I just keep gaining and gaining and I don't see much I can do different at this point. I mean, it's not like I'm eating any junk food at all. We spend $50 on groceries each week for both of us, combined, and Drogo is practically starving (I feel) to make sure that I get enough to eat. He is starting to realize that he needs to eat more, thank goodness, but it's not so bad because he's always been a rather spare eater in general. But I hate that he has to make that decision, and that we have to clip coupons and be so spare and careful in our choices because we have so many fucking bills to pay. I'm tired of actually coming up against the decisions of whether to buy food, gas, or medicine.

I know I'll work through this and eventually (lord I hope so) reach "acceptance", but right now… I'm just wallowing in the anger. Maybe it'll give me the fuel I need to keep going. It's either anger or soul killing despair, so I'll choose the more lively of the two.

I feel like what I'm feeling (and thinking, when I'm coherent enough) at this point in time can be summarized by the two following Skillet songs, "Never Surrender" and "Sick of It." Never Surrender, especially, is almost verbatim what my heart is sobbing to itself. (Emphasis mine, for especially applicable text.)

"Never Surrender"

Do you know what it's like when
You're scared to see yourself?
Do you know what it's like when
You wish you were someone else
Who didn't need your help to get by?
Do you know what it's like
To wanna surrender?

[Chorus:]
I don't wanna feel like this tomorrow
I don't wanna live like this today
Make me feel better
I wanna feel better
Stay with me here now
And never surrender

Do you now what it's like when
You're not who you wanna be?
Do you know what it's like to
Be your own worst enemy
Who sees the things in me I can't hide?
Do you know what it's like
to wanna surrender?

[Chorus]

Make me feel better,
You make me feel better,
You make me feel better,
Put me back together.

[Chorus]

Put me back together,
Never surrender,
Make me feel better.
You make me feel better,
Stay with me here now,
And never surrender.

"Sick Of It"

If you're sick
If you're sick
If you're sick
If you're sick of it
If you're sick
If you're sick
If you're sick of it!

When everything you do
Don't seem to matter.
You try but it's no use
Your world is getting blacker.

When every time you fail
Has no answer.
Every empty promise made
Is a reminder.

No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!
If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

Every single day
I chase my own tail
Like a rat inside a maze
Gotta get, gotta get, get away

I'm running out of time
For me to break this.
I'm tired of feeling like
I'm never gonna make it.

No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!
If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

I'm tired of it
I'm over it
I'm bored of it

Gotta fix this
I'm sick of it!

Raise your hands
If you're sick
If you're sick of it
Raise your hands
If you're sick
If you're sick of it

Sick of it!
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

Are you sick of it?
If you're sick
If you're sick
If you're sick of it!

Get rid of it!
If you're sick
If you're sick
If you're sick of it!

So in all honesty, Hope's comment on my last post stuck in my mind and irritated me, like a splinter just under the skin or a grain of sand under the lid of your eye. As I am wont to do, I poked and worried at it, trying to figure out why it irritated me so. After all, if we can't learn about ourselves and improve and enhance as time goes on, why bother thinking at all? What's the point of introspection?

Anyway, I think I'm on to something. If you've not been in an intensely abusive, dangerous, or dysfunctional situation for an extended period of time, you won't understand. You just won't. I'll try to explain it in simple terms, though, so that I can get the words out of my mind and my heart, spit them out like gravel so I don't have to chew on them anymore (though truthfully I know they'll be rattling around in the back of my head for weeks to come now, if not longer).

I was raised in a sea of destruction. I never learned how to swim; I simply managed to avoid drowning.

I've never wanted anything more in my life than to be accepted for who and what I am, completely and without reservation.

I don't know how long it is in terms of years, but it's been the majority of my life thus far: I have not been accepted but punished and penalized for simply being myself, for being a child, for being exuberant, for being honest, for being… anything. The disapproval of myself was not just cold disapproval or disdain, it was actual physical danger on top of emotional (and often physical) damage, wounding, and scarring. My mind was broken. My heart was broken, again and again. My trust was broken. Who I could have been, should have been, was shattered, never to be restored to its original glory.

The circumstances I grew up in were such that if I failed to obtain complete approval I was in danger, both metaphorically and literally. I had to be pleasing in all aspects, or I would "get it". I couldn't mess up, couldn't be wrong, couldn't be displeasing in any fashion or I would bring pain upon myself and possibly (probably) others in my family, which is an exquisite form of torture in and of itself for someone as protective of loved ones as I am

All I've ever wanted is to be accepted for who I am. To not be rejected for being myself. To be approved of, to have my efforts thought well of, to be thought highly of for simply... being.

My beloved Desert Rose has mastered the art of disagreeing with what I do at times, yet loving me entirely and accepting who I am. Even when she speaks words of correction, I never feel endangered, challenged, or belittled because I am safe in her love.

My mother has been my safe haven throughout my life. I know that, even if she disagrees with what I'm doing, she never thinks any less of who I am or even of my motives for what I'm doing. She holds me in the highest regard, even if and when I have disappointed or angered her by my actions.

When I receive criticism, words of correction from those who have the best intentions and are just trying to help, well meaning suggestions, out and out disagreements and challenges of my thoughts/beliefs/opinions/courses of action, it is a message emblazoned across the sky that I reject you and your best efforts. You are not enough. (Again.) You have failed. (Again.) I reject you and your efforts. Pain is coming, and whatever negative things you experience are all your fault. Whatever pain occurs to those around you is all your fault. 

If this was the core message that every well-meaning suggestion was automatically translated into without your realizing it, would you not be touchy as well?

I recognize it, to a degree. I recognize it more, now. That doesn't stop the feelings from coming, the sickening swirl of grief and guilt and resentment and anger that simmers in my mind and burns deep in my belly. Something is broken deep inside, something that I personally have no way of fixing, at least not as of right now.

I'm tired. All my energy is used up fighting to survive each day, making sure that I'm still around to smile at my husband when he walks through the door at night. (It's harder than you think.) I don't have the wherewithal to make any changes that I myself don't see the benefit of, and I resent suggestions for change or improvement because it suggests that what I'm doing isn't enough, isn't good enough, that I'm not good enough and if I were then I would be better at handling all this.

I'm starving for affection, for attention, for acceptance… especially now that I'm a crippled, huddled little bird. Oh I'll fight and flutter, all right, but is that simply wasting my life's energy to no end? I can't tell. Am I getting anywhere? I don't know. I'm so raw, so vulnerable, so exposed… so adrift on this stormy sea of uncertainty… So tell me, Hope, how can I know what to expect of people when I've never done this before? I've never been sick like this before, been isolated from friends and family by hundreds and thousands of miles before while having my independence so utterly and completely stripped from me. What would you have me do? What do you want from me?

I am doing the best I can, and exhausting myself with my efforts. It's all I can do to make it through the day. I don't have energy to spare to instruct those around me on how to relate to me. Let them, with their seemingly boundless reserves of energy (in comparison, anyway) figure it out. I'm too tired. Too tired, and too broken.

I just want to be accepted for who I am… rants, ravings, and all. Even if it is completely insensical to expect it from anyone.

Okay, this is it. Time for the dreaded and long-awaited summary.

I mentioned about two weeks back that I'd had a craptastic set of doctor's appointments and it was really bumming me out. In the words of Inigo, "Let me explain. No, there is too much. Let me sum up."

Pain doctor came first. It was a different doctor than I'd seen previously (and I liked the previous doctor because he actually freakin' listened to me and explained things!) because of shift changes and whatnot. I got to see one of the founders of the practice, and I was excited. Surely he must be good, because he is one of the founding fathers of this place that had the good doctor I was accustomed to in it, right? Right?

Wrong. He basically came in, spent about 7 minutes telling me that opioids are poison for fibromyalgia and that giving me pain killers is only going to reset my pain threshold at a higher level (my experience of pain, that is, not my ability to bear pain, alas). He is right, and there is medical evidence to support this, and I've heard the theory multiple times. However, given my current circumstances, that's a chance I'm just willing to take. No one has been able to stabilize my condition or get my pain under control yet, and I need those pain killers just to maintain my rockstar disabled lifestyle. It ain't easy being green, you know? Well, I was told by this "pain management specialist" (horse feathers!) that if I didn't have another diagnosis beyond fibromyalgia when I came back in a month for my next refill he was going to take me off of the pain killers.

What.

the.

fuck.

And get this-- not only did he NOT answer any of my questions (like, he just totally ignored them and steamrolled right over me!), he offered no other alternatives either. He never looked at the information I brought him, never talked about managing my pain, just that pain killers are bad and I need to be rid of them. Yeah, sure buddy. But if you would just fucking look at the goddamn pain journal I'd been meticulously keeping, maybe we could put our heads together and come  up with a plan to, oh I don't know, maybe manage my pain? Since this is purportedly a pain management clinic and all. (Though I begin to have my doubts…)

So there was that. The good doctor also pointedly ignored my nearly hysterical weeping over his proposed solution, as well as ignoring my questions and offering no information other than "opioids are poison for fibromyalgia". He said that so many freaking times… Well, I broke down for a good while and cried a lot, but Gramma was there, and was a great support. It wasn't just that I felt totally humiliated and invalidated, but my terror at the thought of a life without pain killers. He could not seem to wrap his mind around how violently ill I become when I have no pain meds, and neither could the head shrinker. I don't understand how they can just write people off like that? My next appointment with the psychiatrist didn't go so well, either. He is prepping me to accept the idea that the pain is somehow psychosomatic, originating from some sort of brain problem you know? (Because I have such a traumatic past and all.) I told him fine, but if it's my brain that's broken can we fix it? The answer I got was that he feels that with therapy I could improve in time. That is no kind of answer, buddy. That's a clever sidestep, and he's full of them. He won't commit to a single point for anything.

He also mentioned that it seems that when a doctor doesn't tell me what I want to hear (i.e. backing a conclusion I've come to on my own) or doesn't help me how I feel that they should then I label them a "bad doctor". I got the sense that he was telling me that the common denominator was me, not that I've had doctors who dicked around for a year and let me get this sick with no testing or anything. I've thought this over and I've since come to the conclusion that, as a patient, it is my right to "doctor shop", as it were. I do not have to put up with inferior health care just because I'm afraid of how it might look to some other doctor. Unfortunately, I do have to keep that in mind, because as a chronic illness patient I will be seeing doctors for a long time to come and if they think I'm doctor shopping to get meds or something I could run into some serious roadblocks. Isn't that so backwards???

So the psych appointment was incredibly disappointing as well, and I was crying so much and so hard that I ended up throwing up in the parking garage. Not a good day. Earlier this week I went back to the hospital in the big city to see my rheum, because I got lucky and they had an opening about a month earlier than my previously scheduled appointment (which would happen after my pain management appointment, thus putting any hope of a diagnosis outside of my one month window), and my grandparents were already going up there for a series of board meetings my gramma had to attend. It worked out great, ride-wise. Grampa dropped Gramma off at her meetings and then took me to my appointment. He even came in the room with me, which was nice because I totally needed moral support.

So here's the thing… The last appt I had with this doctor, I felt pretty disappointed and was upset. He told me he thought my problems were due to fibro, but was willing to look into the autoimmune side of things. This time, I was able to set aside my emotions and see that he really did everything he could and was supposed to do as a doctor, even if the results weren't what I wanted to hear at all. He was compassionate but thorough, and even though he could not think of any left field ideas of what might be ailing me (besides the fibro of course), he patted my shoulder on the way out and said he was sorry. He had to tell me that there's basically nothing he can do for me.

The results of the very comprehensive blood work show that not only do I not have lupus, but I don't have any of the other autoimmune diseases in that constellation of happy fun time. Diagnosis? "Just" fibromyalgia.

Here's the kicker: they (meaning the medical and scientific community) don't know what causes fibro, they barely know how to treat it (of the patients that respond to the medication, which really isn't many, they can expect to see a 20% improvement on average), and there's no cure as of yet. What that means for me on a practical level is, well, a few things...

1.) My pain killers, the only thing keeping me as sane and mobile as I am (which isn't much) are going to be taken away by the good doctor. (Although my next appointment is with a woman PA, and not Dr. Jerkface, so we'll see…)

2.) I have already exhausted all of the typical fibro treatments from both western and eastern medicine, and I'm still declining.

3.) I'm basically screwed. There is no reason to expect a reversal of symptoms, or even a stabilization for that matter. I'm only 26, so I get to look forward to a long life of excruciating pain, debilitating nausea and dizziness, and a whole host of other fun stuff. Best part? It's all due to a disease that some people still don't believe exists! It's not rare. You'd think they'd have more of this figured out by now. Ugh.

4.) The plans, hopes, and dreams I had for my life? They no longer apply. There's a difference between giving up and acknowledging reality and I'm not ready to give up just yet, but it would be sheer foolishness and stupidity to think that though I cannot stand long enough to cook myself a decent meal or sweep our tiny house clean because I get racked with agonizing muscle spasms that I will somehow be able to hike the Grand Canyon rim to rim. I use my walker every time I go out now. It helps alleviate some of the pain of walking and standing, it gives me a place to sit when I feel faint, and it helps me keep my balance and not randomly fall over or trip on nothing.

5.) I probably won't be able to bear children and have a family unless something drastically changes.

I'll write another post later on the feels I have about this whole thing, but I'm still trying to come to grips with the fact that it's "just" fibro. I could have sworn there was something else aggravating the fibro and making it super intense. How can it be this bad on its own? I totally don't understand...

I lie here in the semi-darkness; the room is lit with a weird half glow from the gibbous moon somewhere outside. The darkness is translucent and diaphanous about me, tinged with heady blues and soft blacks and the minute, luminous influence of starlight.

I am alive, vibrant, and humming despite my inevitable fatigue. My body yawns and curls in on itself; my spirit swings wildly in the breeze of my thoughts and flutters on the edge of an abyss. It reaches out with impossible hands to gather the moonlight to myself, to pluck the stars from the sky one by one and place them on my tongue to feel them melt into inexplicable froth and disappear.

The ever present question looms large in the darkness of my supposed rest: what is wrong? Another disease stricken off the list, and I suppose I ought to be grateful for each horrible fate that no longer awaits, each drooling and writhing hydra gnashing its teeth I somehow manage to escape. And yet… I find myself disappointed. Each awful reality would make so much sense, it would fit so well, and yet it all remains enigmatic and foggy… a foe that strikes at me from the mist, and I am helpless to identify it, to strike back, or indeed do more than clumsily dodge blows as best I can and try to staunch the bleeding.

It's not lupus. Well what the hell is it?! It's not multiple sclerosis. It's not this. It's not that. Do I just have the worst case of fibromyalgia in the whole freaking world?! Did I just hit the terrible luck jackpot and I have to live this way the rest of my life? Continually worsening… medications ineffective… barely scraping by financially because everything extra goes towards medical bills and the trips it takes to get me to doctors who might actually be able to do something… Maybe I should just do what a good soldier does and fall on my sword. But no… I've contemplated that so much lately, down to the minutae of planning and taking into account all the loose ends to be tied up upon my demise… and the thing that gets me every time is the mental image of C finding my body. I can't bear the look on his face or the tears. I just can't do it. So I curl up into a ball and whimper while the mist swirls and eddies around me, while the unknown, unnamed, faceless enemy (enemies??) stalks and jeers and jabs and demoralizes.

I want to get better. I want to be better so bad it hurts. (Maybe that's my problem. Hah!) I have so much potential… so much locked away inside because I don't have the energy or strength to pull it from myself and lay it out in the sun. I need an assistant, a minion, a crone… Someone to hobble hunchbackedly to and fro at my beck and call. Someone to take over the menial tasks of living so that I can focus all my precious remaining energy on creative, ennobling endeavors.

I sit here bare skinned, swathed only in quilts and blankets, and even in the dark I cannot bear the sight of myself. It is not that my form is displeasing, per se… but it's because I can see what is inside me and it kills me that I can't be everything that I want to be. On the inside, I am wind chimes and church bells and Tibetan prayer bowls and bagpipes and a hand drum. I am brightly colored beads flashing in the sun, multi-hued fish swishing secretly through cool ponds and rivers, and the whisper of leaves as the weather changes. I am the smell of rain on the way, the eye boggling pleasure of a riotous tie dye pattern, the satin caress of age-smoothed wood, and the soul satisfying release of the perfect cup of tea or coffee. I am so many bright, beautiful, eclectic, warm and neutral, shining, earthy, wildfire things inside… and I can't get them out. I can't be who I really am and who I really could and should be because of this poor broken body that I can't help but hate sometimes. Most of the time I regard it with a fond kind of pity as you would with an injured kitten, maybe with a bad leg. Other times, though, the frustration boils up in me like a scalding magma that feels so good to indulge yet at the same time fills me with a deep and ineffable despair and sadness… because I am not sure that this body, this prison, will ever change. Kitten's legs can heal. My beautiful soul-skeleton is closed in by swaths of pale, chubby flesh shot through with purple stretch marks that were never there before. Sometimes they are beautiful tattoos that tell the story of my Amazonian endurance, and other times they are the ragged cracks through which despair and disgust ooze from my very core as lava from the earth's crust.

So I lie here in the half-moonlight, and I wait. I wait for sleep to overcome me, as inevitably it will. I wait for tomorrow to begin. I wait… I just… wait.

What is it about death that makes us grieve? It can't be any kind of concern for the well-being of the one who passed away… Well, ok, maybe it can if you believe in hell and heaven and those kinds of things. But really, they, the deceased, are done. They aren't hurting, laughing, crying, missing you… any of those things. In the case of my beloved Chemo Princess, she's not sick any longer. There is no more fight to endure.

I think grieving is a selfish thing. It's not about them, it's about us. How much we will miss the person, how we feel cheated and robbed of the opportunity to build further bonds and create connections with that person… but that's okay. I mean, we all know it is so unhealthy to lose someone and not grieve. Our lives are pretty inherently selfish, anyway, no matter how selfless we try to be. Even the act of losing oneself in service to God is a very gratifying act for the individual. Those who indulge in self-flagellation to make up for supposed wrongs or to score points with God do so out of a motivation of self… a desire for security, eternal or temporary.

Then again, maybe that's why death is so hard. We opened up our selfish little spheres and brought someone else in. We connected with them, we made ourselves uncomfortable for them at times, we let our lives be about something other than us… and now that's gone. Now we're just a little more selfish than we were… or are we? Does it take a living person to form a connection? Does that connection just vanish once the person is no longer breathing, once the heartbeat stops? I don't know. I don't think so, though… Although no further connections can be made, really, death cannot erase what was. As long as one of you is alive and remembering, the connection stays.

Memories. A way to live on after dying. And what a fragile place to live… memories are so delicate, subject to change and repression and fabrication… But isn't it strange that you can make new memories with someone who doesn't live any longer? I know J created a set of new memories with her father D at her wedding, even though he had been gone for months. But she brought him into the event, and there he was. The plant that I brought home from his memorial… it thrives and blooms like nobody's business. I still have that connection to D with his plant, but he doesn't know it. I do. I am making memories with… a plant… but also with D, because I have connected it to him in my mind, therefore he is still a part of my life.

Our minds are strange places. So are the plains of our soul, littered with emotions, the topography constantly changing. You could get lost inside yourself and never make it back out.

It might be pretty plain by now that the Chemo Princess hung up her wand and tiara. Last night, in fact. I felt no disturbance of the Force, no sudden sadness… but I do today. I grieve, knowing that we will make no new memories together. Knowing that her husband no longer has a wife and her children no longer have a mother… at least, not one that can interact with them any longer. I rejoice because she isn't sick anymore. I rejoice that she is done with pain. I rejoice that she fought hard and well and no longer has to be a warrior. But I also grieve… because she was the warrior I looked to for strength. And if she's gone, how will I keep fighting? I am also feeling some twinges of anger. Yes, I am angry… not that she is gone, but that she is gone and I am still here and sick and have to keep fighting for I don't know what reason… simply because those around me would be sad if I died? What a reason to fight… it's both laughable and honorable. I am angry because she gets relief and I don't. I am angry because this is the second amazing human being with SO MUCH to contribute to the world that has been lost to cancer inside of a year out of those that I love. I am angry because she had a specific enemy to fight--cancer--and I don't.

She and I were kindred spirits. Hippies, lover of good music, theater, sparkly things, tie dye, gypsy wagons… and now I must carry on alone. I have lost a comrade, a mentor, a friend… and I am grieving.

Even in the midst of her battle, she is beautiful.

The family's message of love and support for the Chemo Princess about a year ago.

I guess I'm just facing a bit of depression. Then again, I shouldn't be surprised, what with how much stress my body and mind were under this past week. I can probably expect to be worn down and worn out. That's normal, right?

So I'll just be… nice… to myself. Forget the expectations. Just exist, try to have fun, and rest. The toll on my body is probably the same as if I had been fighting a very bad illness for a week and now need to recuperate.

Sounds good.

It's hard not to be down about my situation, though. I'm pretty bummed about this crap body that I've got and the limitations it's put on me. I really just want to go hiking. *siiiiiiigh*

Survivor's guilt. Wikipedia says, "Survivor, survivor's, or survivors guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off."

 I think that chronic illness fighters deal with a type of survivor's guilt, though it's not the standard definition. I mean, we have survived a traumatic event in a way, as our illnesses frequently strip away even the vestiges of our former lives, carving us into a hollow shell of what we used to be and planned to be. The guilt, though, lies not in the fact that we have survived and others haven't (in the sense that we lived and they died), but in the sense that we have survived and they haven't had to learn to survive this at all. We feel guilt because we do things differently to survive, and we no longer fit in with the lockstep of "normal" expectations. I feel guilty because I am a survivor, and I do whatever I have to to make it through the day. I feel badly about myself when others around me do not have to take such drastic measures to cope with the daily, minute stressors, when they are able to sally forth into the dawn, skipping meals and losing sleep and still able to put forth energy that comes from some boundless spring. Sure, maybe it's not as boundless as it would be if they properly tended it, but I have to concentrate all of my efforts and planning and foresight into cultivating the same trickle that they get when they carelessly wander through a day.

I feel guilty for surviving on my terms. 

I feel badly about myself when I don't have a concrete answer to hand out to people when they want to know what's wrong with me. I can't adequately combat the well-meant suggestions because I don't know if it would work or why it didn't work when I tried it, because I don't really know what's wrong with me.

What do you say when someone asks if you're feeling better? I smile, I make something up, and I feel guilty. I survive, however I have to.

I take my pain pills, knowing that they're damaging my body and not a long term solution. But what can I do? I went without for less than 24 hours and I was so sick that I could not sleep or eat, in addition to the ripping pain. Even now, I'm on my proper dosage but I've got this ever-increasing migraine pressing down on me. I know that a vanilla coke will go a long way towards setting me to rights, and I know that some folks would disagree, but I'm surviving.

What gets me the most is when I have to make the public appearances, to go out and do stuff, and people see me and think that I feel better. They have no concept of what I mean when I say that "I'm sick a lot. I'm sick right now." They absolutely cannot fathom the levels of energy that I'm losing just by sitting in a crowded room buzzing with conversation. They don't understand how much it takes out of me to sit in a chair and focus my attention on a stage, on the words being said. When I say I'm tired and I want to go home, it's not because I'm bored, or a little fatigued from the day's efforts. No, I mean that it's probably dangerous for me to be driving but I'll do it anyway because I have to. I mean that I'm having a hard time focusing my thoughts on conversation and it is difficult for me to focus my eyes. I mean that my body aches and my stomach is as upset as if I had a stomach virus. I mean that there is a thick, wet blanket between my senses and the world they're supposed to be interpreting. I mean that my pain levels are spiking, and I'm likely employing breathing techniques just to keep from groaning aloud. I mean that I can feel that I am going to be punished for this in not too short a time, and I don't want to be around people when it happens. I don't want them to see me at my weakest; it will just alarm them. I don't want the energy drain that comes from being around people, any people. (Except my husband, oddly enough...) I don't want noise, I don't want conversation... I just want the comfort of silence, my cats, my couch... familiarity. Comfort. Cool quilts against my face. A glass of water at hand, a mug of peppermint tea for my inevitably upset stomach. Dim lights for my aching head.

And so I try to leave before I get to that point... but I feel guilty. I feel guilty because I'm surviving, however I have to. I hate being in that place, the crash after the adrenaline-fueled outing. I'll do what I can to avoid it. And yet, so often... I feel guilty for surviving on my terms.

Why? I know why.

It's because I don't believe myself.

I know my body. I know my pain patterns. I can tell when I'm getting sick, when the pain is spiking, when I NEED another pain killer to stymie the big spike that's coming that kicks off a cycle of uncontrollable, fully body pain. I can tell when I need a nap. I can tell when the autoimmune side of things is flaring. Granted, there's still a lot I don't know, but there is also a lot that I've gotten good at pinpointing. I know when I need to eat. I know when I need to sleep. I know when I need to stop doing an activity. But all too often... I ignore myself.

Why?

Because I minimize. Ohhhh, do I minimize. I catch myself doing it when I do presentations about my abusive past. It wasn't really that bad, if you think about it. I mean, all that happened was... Did that really happen? I think I'm probably exaggerating what happened. It wasn't that big of a deal. I need to just get over it and stop assigning so much importance to little things.

I didn't realize how much I minimize until C and I were discussing some of my symptoms, and he mentioned my need to eat frequently and right. when. I'm. hungry. If I delay, I get very ill. He's seen it. It's not a secret. It's something I've been dealing with since my teen years at least, and it's just one of those things that we work around in every day life. And yet hearing him describe what happens to me when I get sick from lack of food, well... it was... empowering. It was like a light bulb went on in my head and I thought, "Aha! It's real! I really do get sick! I get very sick, and someone else has seen it! Wow... that sounds terrible. That's kind of a big deal. Huh."

I had a big tussle with minimizing after my rheum blatantly stated (twice) that she didn't see the need for me to be using my walker. I came away seriously questioning myself in many aspects, wondering if I've been wrong and just exaggerating my symptoms all along... if I can really trust myself to know when and if I need something... because, after all, she's a doctor, so she must know, right? I felt guilty for surviving. C tried to put that to rest, assuring me that I use it and my pain meds wisely and judiciously, and that I know my body. He stated emphatically that I am not a wimp or a complainer (which is a great fear of mine-- perish the thought that I should ever become a weak, dependent, whiny loser like G!), and that I know myself. I know what I need to do, and I do it, and the doctor can go fuck herself. I'm inclined to agree... when I'm thinking straight.

My emotions and the self-talk going on in my head tend to get all tangled up in a tangly ball of tangledness, and it gets messy up in there. One of these days soon, I want to draw up a list of "what I tell myself" and "what is, a.k.a. the reality of the situation". Kind of like a cross-referencing chart, you know? So that when I begin to tell myself a certain thing, I can look at the chart and say, "Nuh-uh, that's not how it REALLY is!" Then I can follow that up with the truth. I'm excited for that. I just don't have it in me to create that right now.

I went to an awards ceremony for contributors to the local community because I nominated THJ as non-profit of the year, and we made the cut into the final category! We didn't win, but we still got an award for making it into the nominees. One of our volunteers was also nominated for Volunteer of the Year, so she got an award too. It was a fun chance to dress up and meet a lot of important people, but I'm still getting over being so sick yesterday and I was drained and ready to go home by the time the mingling hour was done. By the time I left I felt pretty bad, and I am definitely being punished for my outing. But you know what? It was worth it. I have some thoughts on my boss's own chronic illness and pain and how that helps/hinders our working relationship and friendship, but now's not the time. This is long enough already. However, I'm not working tomorrow because I did tonight, and that's a whole 'nother load of guilt. She's all sick and in pain too, but she works herself into the ground from her home office... while I'm at home, lying on the couch. I'm sick, she's sick, but she's the one doing so much work... and I feel guilty for surviving however I must. But I must remember that working myself into the ground and possibly ending up hospitalized doesn't do either of us any good. I'm trying to cope long-term, here... trying to survive in length. But oh, the guilt...

I know it's there. I know partially why it's there, even. But what I haven't figured out yet is how to be rid of it. I think that chart would help. I need to set the Should Monster straight again. It's been too long.

Even though I have a hard time sleeping these days, I still enjoy lying in bed with C. Often, he'll roll over and pull me into a sleepy spoon embrace, his tall frame tucked around mine and his arm wrapped around my waist, my head half on a pillow and half on his other upper arm. If he rolls the other way, I will curve myself around him, cheek pressed to the warm expanse of his bare back and arm slung over his side. No matter which way we're lying, our legs always find themselves weaving and tangling together, feet caressing calves and toes.

Last night we carried my "new" "pantry" into the kitchen. It's just a tall metal cabinet with shelves inside and two swinging doors, but it used to sit on the porch of the apartment, and in C's first apartment before that. (I don't know where he got it, as it wasn't there when I lived with him the first time...) After bringing in the pantry, C began cooking and I sat on the squishy rug to converse with him.

I told him that I knew we'd be okay financially, and there's some things I can do here and there to save a few bucks, but in the depths of my heart I am afraid that he will come to resent me for taking all of his money... the way R seems to resent mom. (Honestly, I'm afraid that R will/does resent me, as well. I hate being a money pit.)

My siblings have, at different times, texted me about relationships. The first time, J asked me, "Love won't always be like this, will it?" This most recent time, the other J texted me to say, "Please tell me you are happy with C." They're watching us, waiting with bated breath to see if there really is such a thing as a happy, healthy marriage. I get that. I so, so get that. I seize these opportunities with my siblings to teach them pieces of what I've learned about life and healthy relationships, all the while affirming that C and I are, indeed, happy and healthy and not splitting up. Our friends are watching us, too, looking to us as both example and inspiration. Often I wonder how this can be. We are so young. What kind of examples can we be? But in a world that is riddled with the shattered corpses of unions and commitments, I suppose that a living, breathing marriage in fine fettle is a rare thing, indeed.

Hey! Hey! Hey!
I don't like walking around this old and empty house
So hold my hand, I'll walk with you, my dear
The stairs creak as you sleep, it's keeping me awake
It's the house telling you to close your eyes

And some days I can't even trust myself
It's killing me to see you this way

'Cause though the truth may vary
This ship will carry our bodies safe to shore

Hey! Hey! Hey!

There's an old voice in my head that's holding me back
Well tell her that I miss our little talks
Soon it will be over and buried with our past
We used to play outside when we were young
And full of life and full of love.

Some days I don't know if I am wrong or right
Your mind is playing tricks on you, my dear

'Cause though the truth may vary
This ship will carry our bodies safe to shore

Hey!
Don't listen to a word I say
Hey!
The screams all sound the same
Hey!

Though the truth may vary
This ship will carry our bodies safe to shore

Hey!
Hey!

You're gone, gone, gone away
I watched you disappear
All that's left is the ghost of you.
Now we're torn, torn, torn apart,
There's nothing we can do
Just let me go we'll meet again soon
Now wait, wait, wait for me
Please hang around
I'll see you when I fall asleep

Hey!
Don't listen to a word I say
Hey!
The screams all sound the same
Hey!
Though the truth may vary
This ship will carry our bodies safe to shore

Don't listen to a word I say
Hey!
The screams all sound the same
Hey!

Though the truth may vary
This ship will carry our bodies safe to shore

Though the truth may vary
This ship will carry our bodies safe to shore

Though the truth may vary
This ship will carry our bodies safe to shore

Blech.

"Jane Doe Nobody, Humble Servant of the Lord"? Really?

Does God really want us to erase our identities in order to be a good Christian?

If so... I'm out, yo.

That kind of "faith" puts a bad taste in my mouth.

Also, church down the street has a new sign:

"Church was never meant to be safe or predictable. God isn't either of those things."

A mini sermon on how God isn't safe?

Yeah, I could have told you that when I was being molested and he (apparently) didn't lift a finger to help me.

Can you tell I'm bitter?

My counselor asked me last week, "So what I'm hearing, and correct me if I'm wrong, is that you're angry with God?"

"Heck yes! I'm super pissed at him!"

Yep. Sure am. That's a major obstacle to wanting to figure out this whole religion-God thing...

Okay, okay. I acknowledge that there are a couple of options, here. Perhaps I had false expectations which led to my disappointment. But really, you shouldn't go around telling kids in Sabbath school that Jesus will help them if they only pray unless it's actually true.

Maybe that's part of the reason why "the youth" are leaving the church in droves (if the reports are to be believed). Because they were told that God can do anything, and Jesus loves you, and he cares about you so much that if you lose a sewing needle or need to open a bottle of glue then you kneel down and pray and Jesus will help you. So they test it out. Bad things happen. It's life. It's inevitable. Something goes wrong, and they pray, and... nothing happens. So they pray again. And nothing happens. And your step-father keeps paying you nasty little visits in the night, and beating you, and spending your family's food money on drugs and piddly pursuits, and still nothing happens. Oh, sure, every now and then you find the thing you were looking for (right in front of your eyes the whole time!), but the major issues still go unresolved.

And so you figure that either you're not worth helping, or it was a lie.

I thought the first one for so long... and now I'm swinging 'round to the second one.

I'm not going to lie-- I'm hurt. I feel betrayed. I feel let down. I feel... yeah. I feel like I just wasn't good enough for God to step in and do something. I feel like he should have done something, like they always told me he would, and then he didn't. Like he just doesn't care enough?

Elijah's words ring too true in my head... Maybe God was asleep? Maybe he was on the toilet? Maybe he was otherwise preoccupied? Because why else wouldn't he have heard me? "Before they call, I will answer, and while they are yet speaking I will hear."

Um, what?

I call bullshit.

Sorry, God.

So I'm just thinking that maybe the way that I've been going about it is wrong, you know? Like maybe all that crazy evangelical Christian stuff isn't where it's at for me? I don't know how obvious it is here, but I've stopped identifying with SDA's. I don't consider myself one anymore. I mean, it's still a part of my DNA, practically, but... I just can't do that anymore. There's too much grief. Too much anger. Too much fitting myself into a mold that I just don't fit into, too much "shoulding".

It's funny, because I remember C asking me a year or so ago, "Do you think you'd ever leave the church?"

My reply was a cavalier, "No! Of course not! I mean, I don't foresee that happening at this point. I guess it could happen, but I seriously, seriously doubt it..."

Maybe she saw something that I couldn't see, even then?

So I'm trying to find my own path. Yeah, I know, I heard the message at GYC, and in Sabbath school, and over and over and over again, that the whole "more than one way to God" thing is postmodernism and it's infecting the church and the way the youth think and yada yada yada.

But what do you do if THE path makes you feel like a horrible person? What do you do if THE path fosters and inflames the anger and the issues you already have with God? What do you do then?

Suck it up? Accept it as "your cross to bear"? Yeah, probably.

But I'm not gonna do that anymore. At least not right now.

You know what's weird? I feel like a more authentic, more fully-alive, more "better" person since I quit church. I was waiting to burst into flame or something, to become this horrible person... but it didn't happen. You know, because all those testimonies start out with, "I was living a life without God and it was awful and then I found Jesus and now I'm happy!"

Why is my testimony reversed??

This sucks. I'm going to hell.

But I guess I'll be whistling on my way there.

...but I'm glad I have the choice of whether or not to be part of "the church" and its culture.

Really, I do have a choice.

I sometimes feel like I don't, what with all the people asking me where I've been, and which church I'm going to because they just don't see me anymore, and etc.

I don't really feel like openly stating, "I don't go to your church anymore," so I try to find creative ways to sidestep the issue. (I also don't feel like openly stating, I've been visiting Sunday churches. You know... just trying to align myself with the Devil and all.)

I just feel this pressure, like if I don't go to their church, then I can't possibly be having any sort of a relationship with God. It's either-or with these folks, or at least that's the message I've squirreled away over the years.

I guess what makes it the most awkward for me is that I went to the Super Bible College, so they expect me to be this force for good in the church my whole life, to be a leader and an evangelist, to be eternally true and faithful to the church's doctrines and prophet because I learned, like, everything there is to know about it and it's the truth so how could I possibly walk away without forsaking the very essence of truth itself?

Because, I mean, you can't worship God unless you're a regular church attendee. It's not allowed. And you can't trust God unless you're giving Bible studies or studying prophecy or posting EGW quotes on facebook. Nope. It simply cannot be.

You might think that there's another path you can follow, but that's really just post-modern junk tainting your worldview.

And that's why I avoid these kinds of conversations, especially with those who knew me in my super-avid-soul-winner mode. Those who really know me, well... they don't ask those kinds of questions, actually.

Text from a friend yesterday:

"Hi c. How are you? Missed you today. [Church, in case you were wondering.] F preached a sermon just for you. Love you."

I took the bait.

"Really? What was it about?"

"It was about you and the youth being the future of our church. About believing in you supporting you and never giving up on you. Can probably get a copy for you. How are you?"

...Oh.

I forgot. I'm supposed to be the future of the church.

Well, bother.

At this juncture, it doesn't look like that's going to pan out so well.

On the one hand, it's nice that people care, but... I always feel like their "caring" is fueled by the ulterior motive of getting me back in church, and I dislike being manipulated, no matter how altruistic or well-intentioned the motive is.

Now, if you'll excuse me, I need to get ready for church. I'm visiting the Episcopalian church today.

P.S.-- Adventists who are reading this: tuck this away for a rainy day. You'll probably never get anyone to tell you this kind of stuff to your face, especially if they're avoiding church. Why? Because Adventists are vicious evangelists, and any conversation is a chance that you'll be sneak-saved.

"So they tell me you were a Bible worker."

Ahhh, my reputation precedes me. Am I branded in my forehead or something??

"Yes, I was."

"Did you go to any particular training for that?"

"Well, I went to a little Bible college called SOULS West."

--Ensuing conversation about different qualifications for being a Bible worker--

"So you've given up Bible work, then?"

"Yes, I have."

"But not given up on the Bible?"

"No, of course not!"

And I wonder... what would happen if I told the truth about the matter, rather than just my politically/religiously correct knee-jerk response?

But, really, how do you sum up such a complicated phase in your journey in just a few words? And I don't feel like explaining all of this to a stranger... much less this kind of stranger.

I guess sometimes it's better to just let sleeping dogs lie.

So much for authenticity.