I feel like I've been gone forever from the good ol' blog. It's only been 20 days, but that can be an eternity. I would explain everything that has gone down, but in the words of Inigo Montoya, "No, is too much. Let me sum up."

First of all, the appointment at the University was a rousing success! The doctor's bedside manner was professional but kind, and he was very thorough. I came away with several new diagnoses and a heart singing with vindication that it was not "just fibromyalgia" this whole time. I'm also dealing with Hypermobility Syndrome, Undifferentiated Connective Tissue Disease, and--get this-- Inflammatory Polyarthritis. Yep, that's right. I'm basically an arthritic old woman lol. So right now it's all still pretty vague. We don't have specifics as to what kind of arthritis or connective tissue disease I have, but they took, like, 10 vials of blood, I've gotten x-rays and ultrasounds of my hands, and I go back in February to learn more about what ails me. The Hypermobility makes sense, too. Even if it's not a part of EDS, it can be a thing unto itself and it still causes insane amounts of pain whether it's a standalone or part of the Syndrome. That's where my Intractable Pain comes from, and then I have the arthritic and connective disease pain exacerbating it. No wonder I'm in hell all of the time, why I require overly strong doses of pain medication to keep my body from crashing and burning and putting me in the hospital.

Let's see, what else? Ummm… yeah, I've pretty much spent a lot of this month in bed, sleeping. My friend took me to Tucson and we made a fun trip out of it, going to spend the night with another friend of mine in Sierra Vista, and that was cool. Mostly I've just been trying to survive, buying or making Christmas gifts where I could because I love love love giving people gifts.

Funny, it felt like I had so much stored up and ready to be poured out, but I guess that's my big news. I'm still having a hard time processing the implications of new diagnoses and such, and that's made it rough. In addition to that, Corey's youngest sister passed away a few weeks ago, and that's been really hard. The week that we were making arrangements was the most difficult of all, I think… and I've definitely been taking it harder than Corey. That's fairly normal though, I suppose, at least for us. He doesn't really go in for the whole "displays of emotion" thing, whereas I can't help it. We inherited her young snake (because her dad had no idea how to deal with a snake and didn't want to), and the first time we went to feed her it was a "pinkie", or a baby mouse that has no fur to speak of and hasn't opened its eyes yet. They're small, and we weren't sure how big of a mouse Lemon, the snake, could handle. I was very upset seeing the little guy being sacrificed like that-- it's always harder for me the younger they are-- and when Lemon attacked it wrong and tried to eat it while it was still alive (she's still young and not too good at this yet), I lost it and fled to the bedroom, sobbing. Corey came in a bit later and made sure I was alright, but truthfully he found it a bit amusing. He has some dark humor like that.

So it's kinda been a hell of a month. In addition to all of that, I had some not-very-good pain killers to try out this month, which is what led to the "surviving" part. The spending most of my time sleeping thing is, apparently, an automatic response to grief and excessive stress. However, Corey has been more affectionate and interested in our relationship. I think that the conversations we had made a difference for him, and I know that it got me thinking more deeply. I think the sudden loss has made him more attentive toward me as well, because he is sensitive toward my moods and making sure that I don't fall too far. I love that man, I really do.

Tomorrow is Christmas, and it'll be the first one in my life that I can recall not spending with my mom and siblings. Corey doesn't celebrate holidays, and I'm a bit of a grinch myself, but there are some things about certain holidays that I like and Christmas holds a few favorites. I like lights and Christmas trees and gifts and family. I wasn't able to make any of that happen this year, though, because I'm just too sick, exhausted, and whatever to put forth the effort. I will be having dinner with my grandparents tomorrow afternoon, so that's something. I'm pretty sure they have a gift for me, and I have something for them that I made, but they're really not putting effort into it either because all of the grandkids are gone or grown… kinda makes me sad. But my hopes are that by next Christmas I'll have the vigor to make some effort toward the things that I love, maybe even be able to travel again and see my folks. I really hope so. I hate living all the way across the country from them.

Today wasn't too bad, though. I got a massage, slept, ate cake, and watched How I Met Your Mother all wrapped up in my electric blanket on the couch. Not bad at all, I'd say, though much different than I've spent my Christmas Eve's in the past. I'm hoping to "make" Corey take me out to see some of the impressive Christmas lights tonight after he gets home from work. That'd be neat.

I really need to have sex with my husband. Not just want, although that's definitely a factor, but need. The problem is… we're not exactly having sex these days, at least not on a regular basis.

It came up in a talk we had as we drove back from the pain doctor last week. I am regularly flirting with him, throwing out double entendres and dirty jokes, making sure to touch him and get Physical Touch in there, and I get chuckles out of him and sometimes a bit of reciprocating physical affection, but more often than not it's just a verbal acknowledgment of the joke and an implied rejection in the silence that follows. Sometimes I get an overt rejection, and rarely rarely rarely does he actually take me up on the offer.

I mean, I get why this is. His reasons are perfectly valid and acceptable, but that doesn't lessen the sting of rejection or the cumulative hunger and longing. It's stress, you see. Our life is super mega stressful right now because of the finances and my physical ailments, and it's been building and building and no matter what we do it just seems to keep piling up around us like a big, invisible grave and I just want to scream because it's just so hard. I feel like I can do anything, take on any challenge, with Drogo by my side, but the stress is eating away at him and burying him deep in soft, suffocating layers and I just don't know how much by my side he is anymore.

I'm a very sexual creature. I am, and I own that. (It's remarkable to be able to say that without shame; something I would never have been able to do a year or more ago!) It keeps me feeling emotionally connected, it relieves stress, it fights pain, and it regulates my mood and keeps me some above the incessant swirling blackness of depression. Being celibate on my terms is one thing, but this enforced dry spell? I'm not handling it well. He said that stress has killed his libido, and okay, that's valid. That's legitimate. But it hasn't killed mine, at least not entirely. Granted, I don't want to have sex as much as I did anymore. I just don't have the energy, I'm usually feeling crappy, and I just… don't. But I have never, ever turned him away when he makes advances. I know that if I give it a minute or two I'll get into it and want to proceed, and sure enough, that's what happens. It's just… you can only be turned down so often before it's just not even worth trying anymore.

I'm constantly flirting, trying to initiate… and now I understand the stories told by men with frigid wives, wives who have lost interest or gotten too busy and distracted with the family. I so get it now. The awful part? The awful part is that I know specifically several men and women who would jump into bed with me if I so much as gave half a consent. I can name them, count them on my fingers right now, but the only thing stopping me is loyalty and love to my husband. It just… it hurts, you know? I know it's not about me, but after a while you just kind of start to wonder, is it me? Do you even want to be in this marriage with me? Why am I so undesirable to you? How can I be such a hot commodity to everyone else, but you won't give me the time of day? And I can't… I can't do that anymore. So I guess I'm going to stop trying. What's the point? It only ever works when he feels in the mood anyway, so why bother? I'm so tired of getting turned down, turned away. Take your stress and leave me the hell alone.

…he doesn't even cuddle me anymore. The loving byplay of yesteryear is gone, and I am so achingly empty and alone. He knows how I feel-- I've not been secretive about this--but I suppose he feels as helpless as I do. He understands it, too. His comments and conversation on the topic makes that blatantly clear. But I just want to feel loved again… I know he loves me-- he says so. (Usually after I've said it first.) But I don't feel it. I feel like a nuisance, a burden, a more or less welcome roommate, an expensive pet maybe. No, he cuddles and caresses the cats more than he does me, so I don't even rank that high.

It hurts. It just hurts. And I don't know how to fix it except to fix myself and get better so there won't be any more crazy bills and not enough money in a paycheck for our basic necessities plus my medical needs and he won't withdraw every night into his man cave and while away the hours not thinking, not feeling, until he climbs into bed and falls asleep.

I know he loves me. But why can't he suck it up and show me? I want that more than anything in the world right now.

Update-- After posting this, I went ahead and succumbed to my grief and the body wracking sobs, though I tried to keep it mostly quiet. Somehow, Drogo has this freaky, uncanny talent of knowing 99% of the time when I'm crying and where I'm at, and today was no exception. I was just picking up my laptop again to edit the phrasing on some of the words (can't even remember now…) when he came into the room, laid down just behind me, and wrapped me up in a big, spooning embrace. That, of course, made me lose it even further, but I feel like I did a good job pretending that I was unaffected, even if he could completely see right through it. At first I thought that he was going to bed but it was much too early for that, so when I guessed/asked about it he answered wryly but truthfully.

As we lay there, ensconced in one another's arms, I found my courage and slowly spoke of most of what I'd written here, not even bothering to change the words. a.) I found them in the first place and I can re-use them if I so desire, b.) they applied so perfectly to the present situation.

Anyway, he vowed that he would be more affectionate with me, said that sometimes he forgets I need the touchy feelies so much. I really appreciated that (still do), and the conversation was quite productive. I feel much more loved, and in fact he answered one of my questions with a surprising yet pretty much protected wet boy. He retreats into his man cave and immerses himself in a fantasy world (whether it's games with the guys, anime, stumbling websites, etc.) partly because he just doesn't like seeing me sick all of the time. Who does? I reframed the question for myself, trying to imagine Drogo in my place and mine in his, and I can honestly say that I have zero confidence that I would not immediately do the same. I would hate to see Drogo sick day in and day out, being helpless to do a damn thing about it, and feeling like a big and clumsy oaf if I try to help him with day to day tasks. No, I completely understand why he does as he does, or at least well enough, but that doesn't lessen the sting or sort out the snarl of emotions.

I'm optimistic about the future. When he realizes there's a problem and says he's going to do something about it, he damn well does it. I don't expect to get more sex, and honestly this wasn't a ploy for more. If I can't get it without resorting to cheap parlor tricks and frosted glass bottles, then I can do without. I'm just really happy that he understands that this is a big deal for me and wants to make it better. I love that man. Oh, and he says that he loves me "lots and lots" :)

**Author's note: One of the new/aggravated symptoms I'm dealing with is, for lack of a better term, short term memory loss. I believe I can attribute this to the pain medication I'm on, but it does make for some interesting experiences. This post, for example, was written while I was literally falling asleep at the keyboard. It was totally coherent and even eloquent to me at the time, because I knew what I was trying to convey. The next day, when I realized that I had written a post (because I'd forgotten that I had, actually!) I came over to read it because, naturally, I couldn't remember what I'd written. I found it to be… not quite as lucid as I had thought it was. Apologies. If you can muddle through this and make sense of it, I just may hire you to be my FibroFog Interpreter. I didn't want to delete this, though, because I mean… it's my writing. A piece of myself, coherent or not. So, here it shall remain, if only as a testament to "this is your brain on drugs".**

I'm given to understand that there are many "steps" when it comes to acceptance and grieving of a chronic illness. It may not immediately seem clear as to why someone would need to "grieve" when they're clearly still alive. I mean, grieving is for when people die or you break up or something, when a relationship is lost… right? Right. However, unless you've encountered it yourself, seen it in the life of someone you know (to whatever degree of closeness), or have just thought about it quite intently, it's unlikely that anyone would understand the phenomenal amount of loss involved with a chronic illness diagnosis and the life after the diagnosis. I spoke of death just now; in a very real sense, a diagnosis of a chronic illness is both the death knell for the "old life" and the harsh squall of the newborn as a "new life" unfolds before the patient. Due to the completely unpredictable and generally misunderstood nature of chronic illnesses, though, many times that life unfolds only minutes at a time. There are no grand, sweeping vista of plans and ambitions or sweet, sleepy forests of peaceful routine followed decade by decade.

The landscape of the chronically ill and the average healthy citizen can appear deceptively similar to the casual observer. Often, the land of the ill is surveyed with a passing glance and dismissed with a nonchalant, "you don't look sick!" After all, the sun still speckles brightly along warm earth paths of smiles and laughter, mountains of various sizes and relative distances are scattered through the view, and always, always, the loud gushing streams of cool forward momentum and purpose weave and twist their way in and out of both expected and unanticipated settings. Look closer, though, and you will see troubling changes that stir up an unease within, changes that make you want to run for your life lest you be contaminated as well and your own precious world poisoned.

The straight furrows of garden plots are worn and cracked, dry with fatigue yet managing to bring forth a feeble crop. The cheerful cottages, clearly once a source of pride and sustained labor, now seem to troop sadly across verdant meadows bare of livestock. Lush banks of flowers cover crumbling masonry and low, stooped walls, draping the entire panorama in a rippling, delicate gown of every hue imaginable. The colors are a riot, but blend together to create the most intricate and exquisite of tapestries; every bloom is perfectly placed, from the single frothy Queen Anne's Lace to the tightly bunched carpet of creeping phlox, and what could have been hills barren and uneven becomes a spectacular faceted gem of pure joy.

The chronic illness world can be a harsh, ugly place. The cottages and relationships that we have so carefully labored over and constructed with our own hands through years and years of work, they often fall into some state of disrepair. Those who live in the cottages can do some of the upkeep themselves, but the true purpose of the cottages demands a synchronistic cooperation in order to truly thrive. Beyond the cottages, the near-empty fields mutely allude to the loss of hobby and gainful employment. The sweet silence of the air brings a sharp contrast to the usual sounds of looms clacking, animal noises, children squealing and squabbling; the normal sounds of a busy life have been replaced with a hollow, pealing silence that resonates down to the very bones.

The flowers though; ah, the flowers. The flowers make it all bearable, if not tolerable. The origin is unknown except to the owner of the valley, but such a rich and varied selection is found but rarely outside the landscape belonging to the chronically ill. It seems that the soil of normal lives just does not cultivate the proper atmosphere or soil in order for the plants to grow to their fullest and most luxurious. Well-groomed flower gardens can be seen among the graceful landscaping of nature itself where people have taken to cultivating particular joys and gratitudes, while others appear to be content to take theirs wild and unsolicited.

In my mind's eye, my landscape looks much like north central Idaho, or perhaps western Montana. It is rugged and choppy, coated with mountains and sheer cliffs and whitewater rivers dashing themselves ever downward. It is sparsely populated, and those that are there tend to keep to themselves and be self-sufficient-- no coddling these cottages. Practicality reigns supreme, yet nature itself inspires a veneer of beauty to soften the edges and uplift the heart. Those same rugged mountains are swathed in dark evergreen forest, underlaid with countless varieties of bush and berry and other barks. The seasons change, time inexorably marches on, and even the death that time inevitably brings wears naught but a thin, shimmering mantle, spinning and flaring in the sudden colors of Fall before the cloak is thrown aside and the naked white bones of the world come to the fore of collective consciousness.

The landscape of my illness is part beauty, part blight. Pockmarked scabs of raw gashes in the earth can be found mere steps from a tranquil, dainty pond embroidered with ferns and sweet puffing breezes. I can always find flowers to sustain me, even if it's just one, but the wanton loss, destruction, and waste that I see around me as my world crumbles… it sears my soul with a thousand putrid colors that I dare not do anything with but swallow. Every day is another Pandora's box: the lid is cracked open by morning light, the evils escape and howl through the welkin to begin their outrage anew, and Pandora slams the lid shut tight, having only hope left to herself.

The thoughts and feelings of such a continuous cycle of dismay and disappointment take a heavy toll, and the words do not come easy. They boil and roll around inside of my head and my heart, percolating all the way down to my fingertips… but at the last minute my heavy heart shakes her head and says it's too much, too much, and we're all (all of us pieces parts together) too tired to argue so we cover our eyes and turn slightly to the left, hoping that the results will scatter in the sweetly sweeping breeze. They never do, and I grow heavier and heavier as I wait for the words to finally squeeze themselves from my very pores and splash across the page. I wait for the words to write themselves, to unwrap the weighted intensity of themselves and float out into the world, because I don't understand them while they are inside of me, not really, and if I can read what they have to say about themselves then I just might be able to make some sense out of all of this. My landscape is beautiful, in its own way, but it is also terribly confusing and wickedly deceptive, and I am afraid that someday I may drown in my own confidence.

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...

Looking through the pictures from my party. The party was fun, everyone had a good time (I think), but I'm sitting here crying…

I've gained so much weight.

I'm so sad.

I've tried so hard not to gain this weight… to be healthy… to stay pretty and thin… to accept myself as "thick" or "curvy" or "big", and beautiful besides, but… pictures don't lie. (How does Drogo even pretend to still find me sexually appealing?)

I'm pretty fuckin' devastated.

Want an example? Here.

And now, for contrast, almost exactly a year ago…

That is what I'm used to looking like. Not the other one.

I hate this. I hate being encased in this blubber suit. My endocrinologist is worried about my thyroid, so we upped my dose. I don't have anything to worry about with the adrenals; we're monitoring those. My thyroid levels are good, but this inexplicable and seemingly unstoppable weight gain is a sign that something's up, somewhere.

You guuuuuuys… this may be shallow and petty, but I'm seriously very distressed and distraught over this. I hate being so out of control in every goddamn aspect of my life, even something as seemingly insignificant as my appearance.

I swore that this whatever-it-is wouldn't ruin my special day, my one special day, and it didn't… mostly. I didn't get to everything that I wanted, but I got enough done that it all worked out. It didn't mess up my day, though I was very tired and hurting (and I'm hurting like HELL right now… it's like, 8.5+ and I'm hating this), but it damn well has messed up my life, and I'm pissed.

I'll do a birthday recap later. Right now I'm too upset over my double chin, moon face, and gut. The enhanced bosom I can deal with… everything else, though, has gotta go. I'm doing my best. That's what kills me about this whole situation, is that I'm doing my best… and it's still not good enough. Not by a long shot. :'(

Please forgive what I foresee as inevitable silence over the next few days. Not only am I preparing for my party (YAY!), but I have doctor's appointments to attend and schedule, etc.

Okay, really… a large portion of my silence is going to be due to the fact that I went to the big city yesterday for my regularly scheduled pain doc and psych appointments, and basically they were a disaster that pretty much devastated me. I'm very much afraid for my future right now. Good vibes/prayers appreciated.

A couple of positives from yesterday, though, were quality time with my Gramma, which was so nice. She was just the right person to be there with me when I broke down (again and again), and it was great to have another intelligent person who has had experience with the healthcare field as a patient to validate my thoughts, feelings, and interpretation of the experience. Another was that, for the first time, an able-bodied person actually was abashed and apologized to me when they came out of the handicapped restroom stall that I had been waiting for ('cause the walker). At that same rest stop, I had a very fun conversation with a homeless tramp named David. Cool guy. Very nice, and intelligent as well. He just prefers to life the life of the tramp, traveling from one place to another because why not? I envy him, in some ways. I've wanted to do that for a long time.

So, yes. Yesterday was awful. Kenobi is coming over today (and I might see the Gypsy briefly, if I'm lucky), and I plan to buy some booze and drink away the pain of yesterday (a little-- does apple ale really count?) while watching Disney movies. He has this talk about cleaning my craft room (awwww, how sweet!), but I think I'd rather just collapse into apathy and animated movies. Just... meh. If I was feeling "fuck it all" before, today is that feeling times… times… um… a whole bunch more!

I am grateful that I have the pain meds to make it through this month safely in hand, though. So I can enjoy my birthday, and our Celebirthsary, and guess what? My next appointment, which Drogo will try to get time off to take me to, is on our anniversary. Hah. So we'll get to spend our anniversary together after all, albeit under kinda lame circumstances. No matter. I just enjoy being with the man.

And with that, I'm out.

*radio static*

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.

So what happened, you ask, to provoke such a sadly bewildered post followed by several days of silence? I'll just copy and paste sections from emails with good friends explaining the situation, rather than type it all up again.

"I just had some drama with being let down by a person who promised to do a certain thing... my "adopted" (sorta related by marriage) uncle offered to send me money every month for these two medicines to help with my fibro and said he would be my med provider for life, but today I got an email saying that he got back together with a long distance girlfriend so he will be using his money for that instead. He was all up in arms because he had contacted me saying "hey, my girlfriend called and we got back together, so I want to split the money between you guys alternating months". I told him that the meds are a consistent thing, and it's gotta be all or nothing. I even floated the idea of his girlfriend coming to visit him.. you know, since he had already promised to help me. But then he responded with affrontery, saying that he was uncomfortable or hurt or something because it felt like I was making him choose between her or me. Um, hello?! You put me in that position!! So now he's written me off, choosing the girlfriend.

I just feel... abandoned. Disappointed. Like some hope for getting better has been taken away after I dared to get my hopes up... You know we can't afford the meds on our own. There are no generics for either of them, and the copay is high. So that's what's going on. It just brings up a bunch of stuff with trust and abandonment issues, you know? Especially because he literally said, "I choose D. See you later." Ouch.

He had said all of this "I love you so much, you're my favorite niece, you light up my life, I'm so happy to be helping you out", etc. And now I don't know if I can believe any of it... because the moment that things got uncomfortable him (by his own fault, he shouldn't have promised if he couldn't make good on it... or if he was just going to take it back) he dropped me like a hot potato. Where's the love now?

I guess what makes me the angriest is that I never asked for this. He offered, from the beginning. He pushed the issue. I accepted his help a little uncomfortably, because it's hard for me to accept help.. and I even told him this. I was very honest about my guilt with receiving help from people, especially when money is involved. And now my past has been validated. Again. Accepting help from people just gets you screwed over and hurt. (I know, intellectually and from the work I've done and the books I've read that it's not true but... it has been proven so true in my life, it's hard not to believe it.)

So yeah. I trusted an older male, not exactly a father figure, and I was hurt and abandoned. Again. And I accepted help, against all my inner precautions against it... and I was dropped and left behind. I don't think that any of this was through any fault of my own, but then it never is, is it?

Bleh."

J responded with, "Ugh this makes me so angry too..

I'm sorry. No, you didn't deserve this. At all. I don't know him at all or any circumstances, but he sounds like a jerk. At any rate, he sure treated you harshly and thoughtlessly. Perhaps he somehow really doesn't understand what a big deal his offer was? I dunno. I don't want to defend him. (Well, I kinda do because it's so hard to imagine someone being so unkind to you!) 

He had no business to make an offer like that and then take it back for such a DUMB reason! Seriously. Dumb. What kind of girlfriend is this, anyways, that he has to send her money?!?"

"He's not sending her money, he's going to visit her because it's a long-distance relationship. I suggested that maybe she could come to visit him, and that's when I got the "break up" email LOL.

I dunno if he's a jerk, per se... he has cerebral palsy, so I don't think his social skills are exactly up to par. But he had been going on several times about how happy he was to be helping me, and about how he had been wanting to help someone for a while but no one would let him or he couldn't find someone or something, but now he could help me and he was so happy about it. And now... this.

C said that he didn't think he was too stable to begin with. I guess not. He's kinda gone back and forth on the thing a little the past few weeks before this. I just didn't really see it, because I was a lot closer to the situation... and so hopeful.

I don't think he did understand what a big deal his offer was... though I was very honest with him about how hard it was for me accept help. He shoulda got it.

Thanks for standing up for me :) It makes me feel good to know you've got my back. I posted a facebook status in the midst of my anger and hurt yesterday that said "I'm broken. I'm done, and I don't care anymore.", and I got three private messages and a bunch of affirming, sympathetic, and supportive comments. One of my friends, after learning what happened, offered to send me some money to help with the med costs. I thanked her but turned her down, because it's a monthly thing you know. But I do feel super affirmed and supported."

After responding to the "break up" email, he responded with an apologetic letter and later pled for me to give him another chance to try to make this work. I turned him down, because now I see that I can't rely on him to be stable or consistent. As J pointed out in another correspondence, I shouldn't doubt his sincerity, just his ability to follow through on this. So we're still "friends", or uncle and niece, or whatever, but... it has still taken a toll on me, even though it got straightened out.

I've mentally worked through this, but my emotions have been kinda haywire since, and I've been very restless and almost jittery. The past two days I overdid it by far with cleaning and organizing, but it was like I had/have this pathological need to just stay busy and keep doing, doing, doing. It's not the Should Monster, as M made that distinction, but it's more of a driving need to just... I dunno. Not be helpless? To do something? To be in control of a measure of my life again? Regardless, I felt the effects of overdoing it today with a very low level of spoons and some other unpleasant symptoms that cropped up after I accidentally used up all of my energy this morning. 

On the bright side, I did my makeup today (eye shadow, liner, mascara, lipstick, the whole nine yards!) and I looked hot, especially now that I'm a redhead :) (Doing the makeup is part of what took up so much energy, especially because I also showered, and I had to stand for both of these activities.) While I was in the parking lot of the library today, a stranger doubled back to talk to me, and told me that he hoped I didn't think him presumptuous but that I was beautiful. (He also said he had a thing for redheads lol) It really made me smile, especially because I was on the cusp of throwing up, so I didn't feel all that beautiful at the moment! So I smiled at him and wished him a great day. It was nice. Very nice. Especially because I've been a bit insecure about my appearance lately, having put on weight. It's hard when you go from being quite skinny to chunkier, because you've got that image of what you looked like before that you're comparing yourself to. It's hard for me to see past that and look at myself objectively to realize that I am, indeed, attractive... even with a thicker waist. On the bright side, my bosom has also increased, and C is a boob man, so that works out well.

C assures me that I'm still sexually attractive, and I'm glad for that. It's about time for me to hit the hay, so maybe I'll go see if I can get him to prove it...

Yesterday was a tough day. While life as a whole is good, some days are just rough, you know? It was one of those.

First of all, I was not able to sleep the night before. I don't know why. Sometimes my fibro likes to kick things up a notch and throw some unexpected surprises at me, and this was one of those little gifts. I did manage to get a few hours of dozing in, all put together. Maybe two or possibly three? (When you consider that I was in bed for, like, 9 hours though...) It was nice to snuggle with C, though. He was sleeping rather restlessly, continually pulling me into his embrace while he slept. I liked it, except for the hot flashes I have been going through which cause me to sweat profusely, and the fact that C is a furnace, especially when he sleeps. I was roasting, but content.

I finally pried myself out of bed and got ready for my appointment with the pain management specialist. I didn't realize until later how much hope I had laid up for this appointment, but I was really anticipating something special. I arrived 15 minutes early, because I knew I'd have forms to fill out as a new patient. I filled out the forms, and waited... and waited... for 2 hours. Not impressed. However, I have to give them some grace, as one of their doctors was in the hospital seriously ill, so they were scrambling to cover their bases. Fortunately, they had comfortable couches.

I finally got into the room where the doctor would see me, and waited some more. He came in just after I finished stretching, since I had time to kill. About 5 or 6 minutes after he came in, he was gone and we were through. I was holding back tears, but they began to fall while I sat on the comfortable couch again, waiting for my prescription. A young man sitting near me saw me crying and asked, "Are you okay, m'am?" I nodded and smiled at him through my tears, though they continued to fall. He looked at me again and said, "You're too beautiful to be crying." I smiled again, and then he asked me, "Is it the pain?" I nodded and said, "Yeah, but... they said there's nothing they can do to help me." He looked crushed and sympathetic and expressed his condolences. We struck up a conversation, which helped me to get my mind off of my bitter disappointment and hopelessness, but when he was called back to the patient's room and I was called up to the desk for my prescription, the tears built up again, and I cried all the way to work.

I had hopes that a doctor who specializes in helping people to manage their pain could help me somehow, but he said that since it's fibromyalgia, there's nothing he can do. He instructed me to get 30 minutes of aerobic exercise a day, so that my natural endorphins could do the pain-fighting work for me. I mentioned that movement and exertion made my pain worse and made me sick, but he didn't pursue the lead. I was too crushed to really stand up for myself, but I did point out that, in lieu of standard aerobic exercise, I have sex a lot. The look on his face as he struggled to recover his composure was quite humorous to me. He didn't know how to respond to that at all.

When I was telling C about my encounter, he struck up a hypothetical conversation with the doctor in which he pointed out (in a rather upset tone) that he/I "can't do 30 minutes of aerobic exercise a day. I can't run. I can't even jog. I have to use a walking aide just to get around. Doing housework exhausts me and makes me sick sometimes. I would lay down, but even that hurts!" It was sweet to see him take up on my behalf. I almost wish that he were there with me so he could have stood up to that doctor. As it was, I was dazed and dizzy from lack of sleep, then crushed with the hopelessness of the statement that there was nothing they could do for me.

I told him my problems. I said, "I'm here because you guys know how to deal with pain. I'm in a lot of pain, and it's ruining my life. I'm pretty much bedridden all of the time. Help me."

"I can't help you."

I felt my world caving in. It was like I was looking down a dark tunnel at the rest of my life, and all I could see was crippling, gnawing pain. It felt like a death sentence, like my pain was only going to keep getting worse and worse and there's nothing anyone can do about it. That's why I cried. Because I don't want to live this way, but this man was pronouncing this unliftable curse upon me, throwing useless advice in my face and walking away. This man that was supposed to help me... refused. Said he couldn't.

At least he gave me pain killers.

As I cried in my car, though, I caught sight of the ring that I bought recently, my Warrior/Survivor ring.

On one side, it says "Warrior" in purple, and on the other it says "Survivor" in black.

I looked at the word "Warrior" that was facing me, and I felt my resolve harden. Warriors are named as such because they go through difficulties. There is no such thing as a warrior that has not gone through at least one battle. I am not a Warrior because my life is easy; I am a Warrior because I face and overcome difficulties. This is another battle for me to fight. I will do this. Not so much that "I can do this", but I will do this. I will continue to live my life, even if jerkface doctor man won't help me.

When I got to work, I shared my experience with E, and she held me while I keened my grief and disappointment. I love how she is totally empathetic, because she has RA and deals with large amounts of (literally) crippling pain on a daily basis. We fight the same fight. And we ran into the same jerkface doctor on our journey. He made her cry, too, when she saw him. He said something about the pain being her fault because she's obese and she needs to get up and lose some weight. I would say that something is lacking in this guy's bedside manner.

She encouraged me, though, and shored up the resolve that had already begun to grow in me on my drive there.

I am fighting... one day at a time. One situation at a time.

The rest of the day was... nice. I guess. I made it home and collapsed into bed for a couple hours worth of dozing. When C got home, we went for a long walk and talked about stuff. E had wanted to send us to Julian, my magical mountain retreat, during the time C had gotten off for J's wedding, and I was SO excited and looking forward to it! (Note to self: stop looking forward to things.) Well, we can't manage the gas money for that, either, even though it's only 2.5 hours there. Alas... So I came up with an ingenious idea, which is to go camping here locally for a day or two. We can go out to our special camping place where he proposed the first time (and where some other incidents of great importance happened) and have some time together in the wilderness. (Sorta.) And, fortuitously enough, there is supposed to be a fantastic meteor shower on the days that I had thought we might go out camping! So I'm not going to say that I'm looking forward to it, but it would be a nice thing to have happen.

When we got back from our walk, C prepared and assembled the ingredients for a yummy crockpot stew, which has been simmering all day today and filling our house with delicious smells. It's making me huuuuuungry! Today, I got my MRI and EEG scheduled for about 2 weeks from now, just a few days after my electrical nerve testing. M was willing to come sit with me when I asked him, but a phone call to the hospital confirmed my suspicions that he wouldn't be allowed to come into the MRI room with me, and since it could take an hour or more (unsure on the timing--some sources say 15 to 90 minutes, some say 1 to 2 hours) I would hate to have him just hanging around, waiting for me. That seems rude, especially since he'd have to get the day off of work to take me. I really wish C would/could go with me, but it's not going to happen. I have to be there by 6:30 a.m. for the EEG, and they want me sleep deprived for some reason. The MRI isn't scheduled until 9, and I have no idea when I'll be getting out. C will be needing that time to sleep, because he works that day, so I didn't expect him to be coming with me. In fact, he laughed when I mentioned the possibility, and told me "Yeah, right!" Just as I expected. lol. 

I'm going to have to plan a few things in advance, such as making sure that I have food with me, and pain killers (if I'm allowed to take them-- laying still on hospital beds for that long will take its toll on me, not to mention the sleep deprivation!). I'll also need warm socks and a light sweater or blanket. Hospitals are always freezing. I don't think I'll need to be in a hospital gown, though, since everything has to do with my head and I won't be wearing any metal. I'm not even allowed to wear makeup! (Which is fine... I don't wear it anyway at all, hardly.) I suppose that's because some products have trace amounts of metal in them, which would disturb the magnets in the MRI.

I'm looking forward to potentially getting some answers, though my expectation is that the tests will all come back "normal" and no one will have any idea what's wrong with me. I suppose that's better than MS. I had to explain what that was to C last night, and he looked pretty grim about the possibility. Yeah... we're just gonna assume that I don't have it. That's the best route.

I have been on the couch all day, so sick.

I had two goals today, and I haven't accomplished a one of them. Well, I did make the bed earlier... but I'm still in my pajamas.

I've barely eaten due to the nausea, mostly just drinking water and peppermint tea.

I slept for a while, especially because I was very dizzy and lightheaded. Kept falling over when I tried to stand or walk, and standing made the nausea ten times worse. Not to mention that when I stand up and move, my muscles start up with the burning ache from fibro, plus the shakiness and weakness that made walking difficult. The dizziness is better now, but still there, and I still feel weak. The headache has settled back in as well. I don't think that getting up and unpacking a box is a good idea right now. I'm contemplating a shower, but even that seems kinda risky at this point...

I just hate letting C down by not getting a box unpacked... and also E. I told her I'd rock this grant, and I haven't finished it yet. Granted, she never gave me a timeline, but I always feel that I should complete a project as soon as possible. (Well, I guess I am, since the rest of the time I've been moving, packing, unpacking, or very sick, soooo...)

I don't know why I even bother making plans or setting goals. Stupid chronic illnesses always interfere and ruin things. Sometimes I can power through, but other times I simply cannot. I'm so done being a Spoonie! Can I have my normal life back now?

I'm going to try to get some yogurt down... if I can make it to the kitchen. In the last twelve hours I've  had a couple of bananas, an apple, and some applesauce at various, random intervals. Oh yeah, and I had some rice chips this morning. So it's probably good if I eat something more... solid.

(I'm hoping that I don't come down super sick when I go to work tomorrow... because if I go through there what I went through here when the dizziness/weakness/head problems hit, I will not be able to get myself home. It's a twenty minute drive, and I could barely make it to my bathroom and back, so... I'm a little worried about that.)

So I've discovered that I absolutely despise buckwheat hot cereal.

I hated it the first time I had it the other day, but I thought, "Hey, maybe I did it wrong. I'll give it another shot before I condemn it."

Alas, no. It is intrinsically gross. The only good thing about that bowl of buckwheat cereal I choked down was the butter and maple syrup I put into it. It was kind of like a really disgusting liquid pancake. When I do the butter and syrup thing with rice grits, it tastes like a liquid pancake-- pure heaven! I have to be careful how much butter I put in, though, because apparently I'm secretly either Southern or French and it's really easy for me to just load it in there.

In other news, I carted a bunch of stuff over to the new house, and I cleaned it all up so it's now move-in ready. Next move is packing boxes full of the things that we aren't using and taking those over. I need to stop being so picky about organizing everything before I begin to pack it, because that's just spending extra time. I should organize and sort while I pack, then I'm getting two birds with one stone! And as far as packing materials go, we don't have any newspaper or such... but we do have an abundance of towels, and I just picked up a couple sets of sheets, so I'll just use those. Then, when we unpack everything, I can just store the towels and sheets on the shelves I'm going to put up above the washer and dryer. We have no cupboards or linen closet for that, so I had to get a little creative.

I'm excited to be nesting and settling down in my little house. Apparently C took his brother and some others over to the house last week to show it off, so it would seem that he's excited, too.

More than just the house itself, I'm excited about what it symbolizes for me. To me, it symbolizes the life that C and I are building together, the solid foundation of "us" that we're working from that can weather any storm. Our life together has not been what we thought it would be, but it is better than I could have imagined. I love that man so very much, and I'm so happy and proud to be setting up the house that I will be sharing with him for many days (and years?) to come.

I have requested (and C agreed) that we have a celebratory barbecue once the house is all moved and settled into... Kind of like a housewarming party in reverse. Like, "here, let us give you food and show you how grateful we are for all the support you've given us... and for helping us move." 'Cause the guys are totally going to help us move the furniture, that's just a given.

This is a "journal entry" I wrote today on a bride website I'm part of. I kinda want to blog, but I don't have the energy or the thought wherewithal, so... cupcakes it is.

"Is there such a thing as a bad cupcake?

I really didn't think so, until today.

I mean, it's not like they're bad bad, they're just... not great. Not what I had envisioned.

The cupcakes themselves aren't that much of a surprise. I'm not that great of a baker (I do better with the stovetop than the oven, truly), and allergy-friendly baking is challenging for even accomplished bakers. I'm trying to make cupcakes without gluten, soy, most dairy, eggs, citrus, or potatoes, but I found a mix that looked promising.

After substituting the necessary ingredients and hoping for the best, the smell wafting from the kitchen stirred up my optimism. I was hoping that I would defy the odds and pull moist, finely crumbed morsels of tenderness from the oven, just like the cupcakes of my fantasies. (Because, really, all I've done about cupcakes in the last 7 years is fantasize...)

So the cupcakes themselves aren't bad. They're not finely crumbed, but they're pretty tender... but they began to fall in on themselves while cooling, and they're short. Stubby. No muffin-top here. Most barely clear the top of the liner, and some don't even make it that far. (I'm thinking the whole "1/3 of the muffin liner" thing doesn't apply here...)

Okay. I can deal with that. Piled high with white, fluffy frosting, it'll still look okay, right?

The surprise was the frosting. I opened the tub of "safe" frosting that I'd managed to find, and gave it a vigorous stir, only to find that it's not fluffy and pile-able. It's pretty tasty, no doubt, but it's more of a sheer, sticky spread than anything else. But that was okay. Maybe the Celtic knot cupcake stencils and silver cake spray could still turn these things into a semblance of the glorious cupcakes of my daydreams.

Long story short? No. Not happening. After the silver spray totally ignored the boundaries of the stencil, I thought that maybe cocoa powder would work and look attractive against the now silver frosting. I really should invest in a powdered sugar shaker or sifter of some sort before I try that again... but the cocoa made it extra delicious.

And really, at least they taste good. I'll just tell my photographer to ignore them, I think. It makes me think of what we here at the Tribe say about the wedding day itself: it may turn out crazy, things may go wrong, and it may not be what you envisioned at all. At the end of the day, though, what matters is that you and your partner are married. And at the end of the day, is the purpose of a cupcake not to be delicious?

Note: This was just the test run. Hopefully the real deal-- the chocolate ones-- turn out better! Also, there are no pictures... for a reason. And I tagged this as Tough Times because, though the entry is lighthearted, I'm genuinely very disappointed and distressed about this. My fiance thinks that I ought to storm a bakery, give them ingredients, and demand that they make me something delicious and pretty, or ELSE! I just laughed... because cross-contamination and that's never gonna happen.

Also, please, no baking advice unless you have the same allergies as I do and have done well baking around them. Chia seed for egg, rice milk with a little vinegar (I'm thinking coconut milk next time?) for buttermilk, and thank GOD that I'm allowed a little dairy now or I'd have to figure something out for butter, too."

Yesterday was a seriously confusing set of emotions for me. Very complex, very intertwined, and very pervasive. It left me feeling both invested in and totally invalidated, which is a strange and repulsive mixture. I don't recommend that you try it anytime soon.

Remember how I was all excited that BJ and I were doing lunch and shopping? Well, we did. We also had a lot of time to talk while doing those things, and it was during lunch (our first activity) that things started going downhill for me.

I have come to the conclusion that BJ is not actually a safe person.

This is hard for me to come to grips with, because I have always assumed that she was. Indeed, for a long time she has seemed to be, especially given the largely dysfunctional and toxic people that I was surrounded with. She has been a safe person for me for so long that to have that status shifted is, well... very unsettling. It's almost like an identity crisis of sorts.

I suppose I should clarify what I mean by "safe person", just to be on the safe side. (Heh.) A safe person is someone whom we can have a safe relationship with, versus someone who is toxic and unsafe. According to authors/Drs. Cloud and Townsend, this is how you can identify a safe person:

"So, what are safe relationships? A safe relationship is one that does three things:

1. Draws us closer to God. (Matthew 22:37-38)
2. Draws us closer to others. (Matthew 22:39)
3. Helps us become the real person God created us to be. (Ephesians 2:10)

When John (Townsend) and I asked people to describe a “safe person” to us, they gave us these descriptions:

• A person who accepts me just like I am.
• A person who loves me no matter how I am being or what I do.
• A person whose influence develops my ability to love and be responsible.
• Someone who creates love and good works within me.
• Someone who gives me an opportunity to grow.
• Someone who increases love within me.
• Someone I can be myself around.
• Someone who allows me to be on the outside what I am on the inside.
• Someone who helps me to deny myself for others and God.
• Someone who allows me to become the “me” that God intended.
• Someone who helps me become the “me” God sees in me.
• Someone whose life touches mine and leaves me better for it.
• Someone who touches my life and draws me closer to who God created me to be.
• Someone who helps me be like Christ.
• Someone who helps me love others more."

Okay, clearly these guys are Christians, and maybe I'm not looking for someone to blatantly Bible me into being a better person, but you get the idea.

You see, BJ's house was always a haven of refuge for me from my crazy home life. Even when I was "drifting into the world" as a teenager, I always felt unconditionally loved and accepted by her and her family. When I went away to SOULS, she expressed some concerns that I wasn't learning the whys and wherefores of things, but that I was conforming to peer pressure, and she was somewhat right. (She reminded me of this during our talk.)

In recent years (or year), however, it feels like... I dunno. It feels like I'm responsible for her emotional happiness and stability in some ways, though the cues are so subtle that I'd be hard pressed to put it into words. Honestly, I'm hard pressed to put any of this into words! I know, I know, me without words. Hard to believe, right? *sigh*

There are two driving issues here: one is my health, and the other is my spirituality/life choices.

BJ is a nurse, and somehow it feels like we always end up talking about my sicknesses, especially now that fibromyalgia has reared its ugly head. She can't seem to wrap her mind around why I'm so sick, and I keep getting those cliche phrases that I hate so much, such as "You're too young to be sick like this!" Today she mentioned multiple times that she doesn't understand why I got so ill so suddenly, why my health suddenly took such a nose dive. Heck, I don't understand it, either! It just happened. But I always, always get this creeping feeling like somehow it's my fault... like I did something or am not doing something right... but yesterday, she was so bold as to say that she thinks I got fibromyalgia because I left God. Wow. Really? Really? That's harsh, man.

The thing is, when I feel even subtly attacked, I find myself falling over myself to explain myself more and open up further depths of my soul to her, as if sharing more truth will somehow help her to understand and accept and stop blaming me and bringing out the guilt. (I wonder if her kids go through this, too?) It doesn't. It just complicates things further.

We were talking about my future as a massage therapist, and how C takes care of me so well, and I mentioned that there is a possibility that I may end up bedridden from fibromyalgia, as I know people in that boat. She immediately and vehemently protested this, insisting that I shouldn't focus on that, that I shouldn't even be considering or contemplating it. No matter how much I explained myself or insisted that I'm not choosing this outcome, but that it is indeed a reality that I must face and accept, she maintained her position that even acknowledging it is the same as choosing it, and I shouldn't even allow myself to think about that, and that I'm going to get better and that I'm underestimating what God can do... (as if he would heal me anyway, 'cause it's not like I haven't asked him a billion times before, back when we were on good terms, but I digress...) Basically, she completely dismissed my illness and insisted that I'm going to get over it. At least, that was my interpretation of the situation. As there are two sides to every story, I fully admit that I could have been completely misreading her.

I explained it like this-- if you have cancer, you have to face the fact that a possible outcome is death. That doesn't mean you're choosing it, or even that it's highly likely, but it's still a part of reality. She came back with a fiery and intense rebuttal of, "Only if you have terminal cancer is that the case. Any other kind of cancer, you have other options."

Look, it's not like I want to be this damn sick all the time. I miss hiking, and I miss cleaning my house. I miss doing more than two or three "things" in a day. (I struggled with fatigue already, but that was small potatoes compared to my life these days.) But I really, really resist the attempts to whitewash my reality and my future and exclude reality from my plans and my thoughts. She told me that I was spending too much time researching fibro online, basically saying that I was focusing on the negative aspects of my illness too much. Um, no. I get down in the mouth from time to time, but I'd like to think that I'm actually rather optimistic about being in severe pain every waking moment. I just felt so... dismissed. Invalidated. Disrespected, I guess. Like she was saying, "No, your interpretation of reality isn't correct. It's too pessimistic. Here, let me replace it with my own. This is the right one. Now, don't go back to your way of thinking! It'll only hurt you." I felt as though she was implying that, if I get sicker (or because I've gotten this sick in the first place, and because it came on so suddenly), that somehow it's my fault and that I was probably focusing too much on the negative and not wanting to get better well enough or something like that.

On that note, check out this funny cartoon! (One of my friends, M, showed it to me when I came home all distraught over my encounter with BJ, after I had explained the whole thing to them... or vented, more like.)

The second issue is my spirituality/life choices. I already mentioned how she thinks that I'm sick because I'm drifting from God, or at least that the two timings coincide quite suspiciously. (Because I got sick so suddenly, remember... because it's not like there are any illnesses out there with sudden onsets. Lord forbid I not be able to pinpoint the exact second I got ill and link it to a specific incident. Okay, sorry, sorry... sorry for the sarcasm.)

Basically, I'm not making choices with my life that she approves of, because I've left the path that she deems to be the path of life. She insists it's not about church, but that it's about God, but... I feel that the two are too synonymous in most people's minds to really make a difference. She's devastated because I'm living with my fiance before we're married, but the Bible doesn't say anything about that. The church does. I'm sure EGW probably does somewhere. But God doesn't. Sex before marriage? Yeah, there's stuff in there about that. I know that one, and I'm not going to go into my reasons for why I'm okay with it in certain situations right now. That's not what I need to talk about here. (Besides, there are other things that I'm okay with that God demands people be stoned for, so God and I... we have our differences above and beyond my anger issues with him.)

She told me that I broke her heart, just like her kids have broken her heart, because she/they (she and her husband) gave us everything, hoping that we'd learn to love the Lord and follow him but we've all walked away and she feels like a failure, and... also that I can never again break her heart or hurt her like I already have, because her heart is already broken so badly.

First of all, I resent being "gifted" with the ability to devastate someone like that with the choices that I'm making with my life. Do my choices affect others? Most definitely. Am I responsible for that? Partially yes, and partially no. Others (we're talking mature, responsible adults here, not dependents) also have a choice in how they will respond to my actions, whether they will let themselves be devastated by my choices or simply sad, maybe disappointed. I told her very clearly that I am not making rash decisions, that they are well thought out and wrestled with, and that I have total and complete peace within my own mind about the path that I'm pursuing. She hates that I'm marrying into atheism; I don't mind it. She says that it's going to affect me; I openly acknowledge that it already has, and I quietly acknowledge that I'm grateful for the dose of realism and cynicism. I stated that I am striving to live as authentic of a life as possible, and I am not interested in hiding who I am, where I am, and even why I am.

I just feel that, if I am not making the decisions she feels to be the right ones, then I'm a profound disappointment and I've crushed her soul. No one likes feeling that way, because it's not about my choices, it's about me and my self-worth. I am a disappointment, not my choices. I never, ever feel this way with my mom, with R, or with the S's. They have somehow mastered the art of loving, accepting, and enjoying me, even if they disagree with or are disappointed in the choices that I'm making. BJ has yet to learn this, and I begin to understand why I have felt this strange sense of alienation between her and her youngest son throughout the years. I didn't get why he had this strange, subtle resistance to his parents, especially his mom... but now I do. I feel it, too. You can't thrive in that kind of environment. It's stifling. Her mind is so closed that she can't comprehend that someone else's path might lie along a different track than the one she's taken. She found salvation such-and-such a way and in such-and-such a place; how could you possibly find it elsewhere? It doesn't exist. And if you are outside her understanding of "right", then you will break her heart. *sigh* I'm tired just thinking about it.

The thing is, as long as we kept things light and fluffy, we were fine. We enjoyed ourselves, and had a grand time. It's when things get beyond surface level that trouble brews. I realized last night that I have to draw some boundaries... I just can't let her in to the deeper parts of my life anymore.

I discussed this with C last night, and he told me that he was proud of me, and that I handled it well. I stood up for myself (I didn't go into all the details here, because they're not really important, but I did outline pretty much the whole conversation for him.), whereas a while back I would have quailed beneath her disapproval and cowtowed to her wishes. He pointed out that I'm much stronger than I used to be, even if I don't see it all the time.

Honestly, I am pretty proud of myself, too. I am a little daunted, though, by the task before me of setting boundaries with someone that I've been so open with for so long... but I have to. For both our sakes, I think.

Best part? In days past, I would have been so affected by her words that I would have doubted the decisions that I've made and begun the familiar dance of vacillation. This time, however... I never wavered. I know in my heart that I'm making the right decision for me, regardless of what anyone else thinks, and I'm going to go through with it.

That's not to say that our conversation didn't affect me, because it did. I went to the bathroom and cried. There were "a lot of feels", as my friends would put it. So many feels. Though I managed to tuck it away deep inside me for the duration of our day together, I was swirling in a muddle of torment that evening when I got home. I was able to talk about it with a couple of buddies and with C, so that made processing it a bit easier, and the emotions eased up as I realized what was really going on. I seem to always make the jump to assuming that I'm in the wrong. Always. If something's going on, it's probably my fault.

But the guys helped me to see that such is not always the case. As M pointed out, it seems that the situation was all about her-- her broken heart, her disappointment, the fact that she gave everything and I "betrayed her", so to speak... her confusion about my illness...

Everyone else agrees with me about the whole "facing reality and all the potential outcomes of my illness" situation, by the way. They feel that she is trying to avoid or alter reality... but really, do you blame her? Someone that she's loved and nurtured for over twenty years is suddenly super sick, and talking about how they may end up bedridden someday from this sickness. Wouldn't you panic, too? I mean, who wants that for anyone that they love? I can see why she would deny that possibility and insist that I focus only on the potential for healing. I can see that. I just don't think it's appropriate or helpful.

While I could see her concern and care for me and her sympathy for my pain in her actions throughout the day (not letting me lift things, being considerate of walking distances and having me wait at the front of stores so she could pick me up in the car),  I still don't feel that same support from her that I do from J, or from C, or from my mom, R, and the kids... or even from the guys, for that matter. I don't know what it is, but I just can't consider her to be a part of my support system. She supports me with her actions, but she tears me apart with her words. There is no verbal expression of sympathy or concern for my pain or illnesses, just sighs of sadness and, "Oh, C..." (which, of course, totally mimics disappointment and makes me feel like I've done something wrong in being sick...).

Okay. I'm done. I've waded through this enough. I love the woman, but she's not safe for me anymore. I have to close off that harbor and not anchor there any longer. I can sail through and visit, but I can't unload on the docks.

This is either going to be much, much harder than I think, or much easier than I'm anticipating. We'll see how it goes.