Tomorrow is my birthday. Tuesday, that is. I know it's technically Monday right now where I'm at, but I've been awake for a few hours after another few hours sleeping, only a short nap, so it still feels like Sunday to me. Ah, who am I kidding? The days don't "feel" like anything to me anymore. I don't have a regular enough sleep/wake cycle for that. It's all one long day, punctuated by naps long or short.

On Tuesday I turn 28. I can't help but take stock, think about the passage of time and how much I may or may not have left. When I was in high school (during one of my several sophomore/junior years) I attended a prayer breakfast where the keynote speaker was the father of Rachel Joy Scott, the first student to die in the Columbine shootings. His story of Rachel's life touched me deeply, and it also lit a fire inside me that I've never really been able to explain. You see, she had this purpose and direction to her life that makes me ache for something similar, and even though she died quite young, she still left an indelible mark on the world around her with her kindness, her inclusiveness, and her determination to make the little universe she inhabited a better place. The best part is that she did. She knew somehow that she was going to die young, that year that she was shot. She wrote in her journal some time previous that "this is my last year on earth, I have learned what I can" or something to that effect. (I'm going off of a ten year old memory, so it's not exact.) And now that I'm facing the accomplishment of year number 28, it astonishes me because I always felt that I was going to die young, too. I never really expected to reach thirty. I suppose it's because I've spent so much of my life focused on immediate survival, which was the only way to make it through the trauma of the first decade and a half, but the dreams of the future always seemed unreal and hazy, not concrete at all.

When I look back, though, I am very happy with what I've accomplished, particularly knowing now that I was fighting against Ehlers-Danlos the whole time, and some of the other stuff like adrenal fatigue and food allergies as I got into my teens. I've had some grand adventures in my time. I feel particularly fond of my Idaho adventures. They were the ones most closely aligned with my most closely held daydreams of adult life. Have I ever mentioned that one of my most passionate wishes as a girl was to grow up and join an Amish community? The rustic, living off of the land "survival" lifestyle holds a deep, deep appeal for me, and living on the premises of Summer Hill Farm away up in the mountains was a dream come true in a lot of ways. I only wish that I could have stayed longer, or gone up there sooner. The timing worked out, though, to be for the best. I could not live up to the rigors of country life in my current state of disability, so it's best that I moved back to a soft city life before it got too bad! ;-)

I do feel a sorrow, though, for the life that I will not get to live. Chronic illness and intractable pain have changed my life irrevocably, and there is a deep sadness that comes with that certainty. Granted, I'm the most comfortable that I've been in years, now that I have the proper balance and dosage of pain medications, but the thought of years and years of this is… daunting. To say the least. I feel like I'm constantly dancing on the edge of a chasm, and if just one little thing goes wrong anywhere in the chain of events, I will topple over the edge and be broken on the jagged rocks below. If something happens to  the manufacturing or delivery of the pain medication, I'm doomed. If the pharmacy has troubles with stocking (like they have the past 6 months), I have nowhere to turn. I tried getting my meds filled at a different pharmacy, but they all turned me away because my needs were too great. If I can't get the hundreds of dollars necessary each month to buy the meds… I'm toast. So it's not just the thought of the huge drifts of pain that will accumulate through the years, but the stress of not knowing, each and every month, until I'm rolling out the pharmacy door with meds in hand, that seems the most unbearable. It's a really doomy, gloomy thought, so I try to not think about it much. Sorrow? Check. Stress? Double check. Moving on.

I read a really interesting sci-fi book a few days ago called "Factoring Humanity" by Robert J. Sawyer. I don't wanna give away spoilers, but one of the premises of the book is that humanity isn't a bunch of individuals on a spinning rock, totally unconnected from each other, neither is the information gathered over a lifetime lost when an individual dies. Rather, humanity is all connected to one another through what the book terms the "over mind", a collection of the consciousness and information of every human mind that has ever existed. The information isn't lost at death, but rather "uploaded" and saved, like backing up your computer data, and the book goes over the story of how the over mind is realized and explored by a few humans at first, using the information sent to Earth by intelligent life on Alpha Centauri over a period of ten years via radio signals. I know it's just a fictional book, but it really does give me a framework for understanding the world around me that really appeals to me and just makes a lot of sense in some ways. It's given me much to think about, in any event.

That brings me back to the idea of "making a mark" on the world around me, though. Discount the idea of the over mind and just focus in on the thought that when a person dies a shadow of them lives on in a way through the memories of the people they interacted with. I would really like to be able to say that my interactions with the people around me left them happy and better able to cope with the harsh realities of life, you know? Because life is hard. Really hard. Anyone who says differently is selling something. Hehehehe. (Princess Bride reference, in case you didn't catch that.) We all know at least one person who is definitely not a delight to be around, and who seems to just make everything a bit harder to bear; someone who sucks the energy and life from those around them and either doesn't know or doesn't care. I don't want to be that person. Even if I have excuses that seem valid, I do NOT want to be that person. My young life was ruled by a tyrant of that sort, and I know how miserable it can be under their thumb. I absolutely refuse to do that to anyone else if I can help it. I think I've done a pretty decent job of avoiding that pitfall, even with my new neediness that came with the nosedive of my health. Perhaps my "mark" is simply that I made some people happy some of the time, made their lives a bit easier, even? I mean, in a first world world, what else is there?

So I'm turning 28. My husband will be 30 next month. I remember the days when 30 seemed so old! My girlfriend is even older than my husband, if you can believe that. Age never really mattered much to me as much as personal maturity, although I do tend to have a thing for older men. Daddy issues, most likely. I'll own that. lol. So I guess that's it. Just some musings on my life and what I hope I'm doing with it. At this point I don't feel like there's much I can achieve anymore beyond interpersonal goals. I'm just too damn tired. Somehow, I have to make peace with my multitude of dreams and my achy, sleepy reality. I have been doing "better" the past couple months, though. I'm starting to feel like myself again, really and truly. An altered version, no doubt, but no one stays a static version of themselves forever anyway. I'd be altered no matter what.

I've started going for walks again, though, and I get out of the house twice a week regularly, once for grocery run with Corey and once for coffee date with Saka. I've even stopped throwing up all the time, thanks to a lovely med they give chemo patients! I have to take it consistently, though, or else the nausea sneaks up on me really fast and I find myself on the couch clutching my vomit bowl within a span of ten minutes from feeling fine. Gotta keep it in my system. I can't help but laugh sometimes at how different my every day life is from what I'd ever imagined it being!
No artsy cafes or guitar in the park, no challenging classes out at the college with a yoga session afterwards.
No five mile walks in the muggy warmth of a summer's night.
No swell of a pregnant belly.
No certificates of continuing education, no job, no paycheck.
No numbers in my savings account.
No trip to Europe, touring art and culture and food.

There are losses, to be sure. I gotta quit that or I'll start crying. But hey, everyone has losses, and everyone has gains, too. I know I'm better off than I was a year ago, and for that I'm very thankful. Here's to another year of, um… tea and Netflix! Yeah! And a circle of good people who love me very much. That's always a good one.

That's right-- I pierced my nose! Did it last Tuesday while in Wisconsin. And I got the next set of lobe piercings. Eventually I want to be pierced all the way up to the top of the ear, but that'll take time. I have to baby my nose ring, because I'm so prone to infection and it is catching a slight infection, but I'm not worried. I'm treating it real good.

I have so much to write about, but I need to fall asleep about 2 hours ago, as I'm working the final day of this season's gun show in a few short hours. Buenas nachos, all. Just wanted to commemorate my bad-assery. ^_^

…now you don't.

I feel like I'm losing my mind. There's no other way to describe it as accurately and succinctly.

April was a hard month. Lots of pain that just wouldn't be budged, increased sleep walking, further weakness and increased discouragement and depression… and all that after getting my wisdom teeth out the month before. I cannot pinpoint a specific time that things turned for the worse, but that's always the case isn't it?

Nothing, though, nothing could have prepared me for the experience of this past week. I have trouble when I'm particularly weary with full body muscle spasms that jerk me around like I'm having a seizure, and I also have a tendency to fall into a half-sleep that's deep enough to dream a little but not awake enough to know that the situations are fictitious. I end up with these conversations I've had with other people, but they turn out to be one-sided. It's quite embarrassing, actually.

This week, I've had a lot of fantasy conversations, but more than that… I've begun hallucinating again. Auditory hallucinations are commonplace for me, and have been my whole life. I tend to hear music playing that no one else can hear but me, wherever I'm at. Visual hallucinations started as a child as well, because I remember distinctly having to take naps in my step-grandparent's spare bedroom on Sabbath afternoons, but I hated nap time so much because I was at least 6 or 7 and I wanted to be up and reading or something! The walls were covered with portraits of family members throughout the years, as bunches or singles. As I lay there in the afternoon half-light that filtered through the drawn curtains, I had nothing to do but stare at the photos and watch as they talked to one another. Their lips would move, heads turning, facial expressions would change; full blown conversations were going on, but I didn't know to read lips so I couldn't follow along. There was no way I could tell anyone about that, ever, because I knew that it would sound super crazy and the line of success/dysfunction that my family crept along was tenuous, at best. I didn't want to be made fun of or told that I was crazy, so I kept it to myself. I finally told my psychiatrist this past year, though.

And now we come to my current dysfunctions, the ones that are giving me so much trouble and leaving me questioning my own senses. In truth, the problems are much the same, but now they're the adult version, having apparently grown up alongside me.

One of the big problems with my diseases is the fatigue. Sometimes I deal with insomnia, but more often than not I sleep more than the average person is supposed to need to. When my mind is fuzzy with fatigue it is much easier to space out, but when I come to I remember snippets and snatches of conversations… or thought sequences… or were they dreams? Yeah. Dreams. That's gotta be it. And so it goes.

What will happen is that if a friend says something, I will formulate a response in my head, and then they'll answer, and I build the experience on the back and forth that comes next. Only… lately, I've been actually hearing what before used to be just thoughts in my head. And when that conversation is playing in my head (the one that stopped being relevant about 20 seconds prior) I join in with my retorts and comments, of course! To the other person, it seems as though I'm just spouting gibberish and nonsense, which, to be fair, is the truth when you can't hear the other side of the conversation. For instance: Drogo was playing a computer game he purchased through Steam called Elite: Dangerous. It's about space, but it's really well done and I love watching him play it. Yesterday, however, while I was watching him attack another ship in the particular solar system he was occupying, I noticed that there was some kind of theme music that seemed to "caption" each shot he laid on the other ship with a funny taunt laid out to a simple tune. (I don't remember any of this, just a few moments here and there.) I laughed at the awesome lyrics and said something about how I loved the captions to his shots, and he looked at me very strangely. I was like, "There is a song playing right now that emphasizes the shots your getting off… right?" Well, no. No there wasn't. And throughout this past week I have been hearing more and more things that aren't there.

I'll hear Corey say something and without really processing it my brain will formulate a response that just tumbles on out… and makes, like, zero sense. It's a lot like playing "Telephone", except that the other person has no idea that they're playing or indeed what they said in the first place! Often I'll jerk myself awake out of a doze because my body is trying to physically imitate what my shallow dream has me doing, like eating ice cream maybe, or handing a stack of paper to someone, petting the cat, whatever. The physical action has loud noises or words that accompany it, and the combo of those will jerk me awake so that I can try to play it off as myself coughing or rolling over or something hide, but a split second later and I'll be off chasing the White Rabbit again. Even if I'm awake, I can find myself grabbing for whatever is bothering me without realizing I've even done it yet, or suddenly breathing hard and blinking rapidly to jerk myself out of doze mode and back to the present.

The visual hallucinations, well, it's that moving picture thing again for certain. There are no portraits on the walls of my home, but there are plenty of other things to distract my eye. Generally, it is the movement of stationary things, like shadows scooting across the floor or at the outsides of my vision, sometimes right in front of me; spots of dirt or some-such, even the natural patterns in the walls or tile take on movement and writhe like small insects. There doesn't even have to be a pattern to it when all of a sudden a dark blot of movement streaks by your thigh, and  by the time you look over it's already long gone. Or how about seeing the blankets themselves move of their own volition right at the back corner of your vision, only to find them stationary when you whirl to look. Let me tell you, it is freaky when all of a sudden you think you're surrounded by bugs! Ticks and ants and other creepy crawly things! Aaaaugh! I'm always relieved to see the truth of that one. Another common one is thinking that I see one of the cats walk past and then be obscured by the table, but when I go to look at that corner there, it's empty. No cat there. Gahhh. Y'know, maybe I'm not crazy. Maybe my cats are just ninjas!!! Occam's Razor. Yep. That's got to be the answer, then. :P

Yesterday was bad. Like, bad bad. I was very actively hallucinating, more than I ever have before, visually, audibly, and with sensation on my skin as well. That one is common, but it never ceases to be startling when you suddenly feel drops of scalding water or ice water flick against your skin for no reason, or when you are positive that there is a bug crawling on your arm/leg/toe/face/etc. I am definitely going to be bringing this up to my psychiatrist tomorrow, but there are some other physical symptoms that I feel are connected somehow and are giving me just as much trouble as the hallucinations but are more alarming. My eyes… for some reason, they'll just stop focusing, and everything gets blurry, especially anything from the end of arm's length toward me. Can't read, can't write, can't tell which pill bottle is which sometimes… It's terrifying. Each time I wonder if that will be the time it lasts, that my vision won't revert. I don't know what to make of it at all. Frequently I will be struck with what I have dubbed "eye seizures", which is where my eyes won't focus right, but they're still mostly in focus. My vision simply shakes from side to side and prevents me from latching on to a more distant focal point. Eye seizures are for further distance, and the unfocusable eyes are impossible for

The next problem I'm having is that my legs will just collapse beneath me. As I mentioned before, I do sleepwalk, more and more intensely these days, and it has been while sleepwalking that I've noticed the most collapsing. More so this past week, however, Friday being the worst of it, I have a split second's warning that my legs are about to give way when I feel this pulsing throb of weakness that shoots through my entire being. As the spasm of weakness passes, my legs buckle after the apex and I must clutch something, anything to keep me upright. Even then it's not pleasant, for my heart is pounding, I feel weak and exhausted in every inch of me, and my chest is tight while my heart hammers away. Sometimes there's chest pain, sometimes no, but always it feels like a dark balloon expanding within my chest, and once it pops a thick, sludgy wave washes through me and pulls me to the floor. Dizziness explodes behind my eyes and the room swims around me in crooked, clumsy laps.

Even as I type, I am struggling with some of these things. The dizziness, the throb of weakness and pounding heart, the rapid drift back into dozing only to be woken up again and again. I snap awake, limbs shaking and heart pounding, eyes blinking rapidly and looking around for context clues as to where I am.  My lungs pull in the sharp, short breaths of one who has forgotten to breathe just a bit too long. My head jerks around, the ratchet movement keeping me awake for the moment, my outstretched hands moving likewise, rapid but aimless, as I find myself trying to grasp for a literal lifeline. The searing moment of clarity is driven into my skull like a railroad spike, but I know that all too soon I will be adrift upon the shallow, troubled waters of this unsatisfactory sleep.

Also, as a side note, I just want to mention that my mouth is all kinds of ulcerated and painful on the inside; sores on my tongue, roof of the mouth, cheeks; abrasions and tender and inflamed areas that leave me clenching my jaw in pain when anything other than water passes through my lips. My glands have been swollen for a week or more. I cannot feel much in the skin from my cheekbones down to my collarbones. It is cold, and it is numbed, though I know not how. My memory is absolutely shot. I lose track of sentences while I am speaking, fumbling to a stop because I'm not sure how I wanted to end it, much less what the idea I was trying to convey was. I finally got my first menstrual cycle since December, which had me freaking out and hoping I wasn't pregnant and that the tests I took weren't faulty. I think I really scared Corey yesterday with my inability to remain standing and the severity of my hallucinations. Sometimes I can play it off like I'm talking to the cats, but usually not so much.

Oh! I broke my phone last night. See, the twitches aren't just about my legs jerking around as if they'd been hit with the rubber reflex mallet. That's part of it, but another, much bigger problem is that I will be holding something normally, say a mug of tea or a bowl of cereal, but suddenly my entire arm with jerk wildly and I now have hot tea all down my front, or a puddle of cereal and milk in my lap. It sounds funny to read, I know, but in actual practice? It sucks. Do you have any idea how many times I had to start the washer recently?! Too many. Anyway, yesterday I picked up my phone from the couch, and bam! Arm and hand jerked, my (admittedly ghetto) phone flew to the tile flooring in a very direct manner, and it broke in half, exposing the guts. Later that night I figured it out (still not sure how, really), and while I'll need another phone, I still have this one… even if it is being held together with black electrician's tape ;)

So that, my friends, is what is going on with me right now. I don't know where the boundaries of reality and fantasy intersect anymore, and I genuinely feel like I might be losing my hold on reality. Seriously… how scary is that?! All I know is that I keep resurfacing, gasping for breath and shaking my head rapidly to clear it. It works for a few microts, but it's scary as hell because down, down, down I go as soon as I'm not actively forcing myself awake. Even so, there are times that doesn't work either. How can I trust anything anymore when I can no longer rely on my 5 senses to guide me? Funny how the brain is so powerful, but not powerful enough that it can escape when turned upon itself, eh?

(image found at http://xkcd.com/137/)

There's been some stuff that I've been wanting to write about lately, but I've held myself back because I'm afraid. I'm afraid of rejection, afraid of judgment, afraid that I might offend those readers whom I call friends so deeply that they will turn away and never come back. I've been toying with the idea of writing it anyway, because really, this is my space to be free and be myself without judgment, and the moment I censor myself because of some imagined consequences at the hands of probable judges, well… I might as well just stop writing altogether.

I do know that some of the things I have to write will be unsavory for certain members of the conservative Christian crowd that I used to run with, and that's fine. Different strokes for different folks, you know? But it's the thought of those conservatives that fills me with such dread, as I know that such a community can be rather… unforgiving in nature, and I don't want to bring that kind of wrath down upon myself. I also don't want to make myself the target of some kind of evangelistic campaign designed to "win me back to the truth" or "bring me to the light" somehow. The choices that I've made have been very deliberate and thoughtful, not hasty compromises made in the throes of passion or despair. 

I don't feel like I'm being true to myself, editing out important bits of my life and personality this way. With this in mind, I have decided to write. Stumbling upon this cartoon earlier this evening just underscored my conviction and reinforced my thoughts. I still wish to take the convictions and repugnances of others into consideration, however, such as the toning down of the language that I often use, substituting swear words and epithets for other phrases. My plan is to speak in broad strokes about what I wish, and if I feel the need to go into detail I'll save it for a separate post, so readers can decide if they want to read that particular entry or not.

Why all this hesitation, all this caution, you ask? To put it simply, I'm an active member of the BDSM culture and community where I live, and I apply the kinks and fetishes I am interested in to my lifestyle on a regular basis. No, Corey and I aren't having sex on a very regular basis anymore, simply due to illness constraints and stress problems, but I can say in all honesty that kink isn't just about sex. That is, it doesn't have to be. It can be, or it can be completely removed from lust and intercourse. You really have to be involved to understand. But yes-- I like leather and lashes and corsets and ropes. All of that good old taboo stuff. There is a huge wide world of kink and fetishes within BDSM, of course. There's no way one could possibly be interested in or involved in everything. What I appreciate most about the culture is its emphasis on Safe, Sane, and Consensual, or alternately phrased, Risk Aware Consensual Kink.

What I would ask is that anyone who is finding themselves repulsed or immediately huffy and judgmental, do some research. There are a million and one websites that explain the basics and the theory without being pornographic, and who knows but that the information may prove of use in the future? Just because a person looks "vanilla" (not involved with kink) doesn't mean they are. Most of us keep up a very good front, afraid to come out of the closet for fear of losing jobs, friends, family relationships… There is a lot of stigma, and a lot of misinformation. That's part of the reason why I want to be open and honest about this; to dislodge and refute stereotypes and negative associations.

The reason I bring this up at all is because it's how I celebrated my birthday. The group in Yuma that I'm a part of has monthly "munches", which are vanilla gatherings where we get together and eat, hang out, and just generally have a fun time together. We also have monthly play parties where we get together and do just what the name implies-- we play, as groups, couples, or individuals. I've attended several parties but I've never had the opportunity to engage in any play before, as one of the rules imposed on me is that I'm not allowed to play unless Drogo is in attendance and gives me permission. His days off were changed to include the day the play party was held, and he came with and gave me permission to engage in some play. He said, "It's your birthday; go have some fun," all indulgent-like. It was cute. I was ecstatic. But I will write a separate post about the party and how it went, what I did, etc. for anyone who wishes to read it. Most of the time, at that party and at all the others, my time is spent hanging out with a plate of food and chatting with my friends. Just like any other party. We really are like any other people, except that our mutual hobbies are considered alternative, or even "bad". (Hence the secrecy.)

Another thing I've been wanting to write about but holding back on is my spiritual journey. If you've read some stuff from the early days of my blog, you may know that I was struggling along in a particularly conservative branch of Protestantism known as Seventh Day Adventist. I have absolutely nothing against the Adventist church, as I was essentially born and raised SDA and have a great number of fond memories throughout my life associated with it. A large amount of the people I hold near and dear to my heart are active SDA members, and I spent 3 or 4 years working as a missionary for the church here in the States. That being said, some of the attitudes and actions of members and leaders in the church really damaged me in profound ways, and some of the beliefs held by the church and by the members crippled me in ways that have been difficult to undo.

After moving back to the Southwest from the Northwest, where I lived for several years, I engaged in about a year and a half of study as to whether the basic tenets of Christianity and the authenticity of the Bible were real concepts that I could trust and build my belief system upon. I didn't find it to be so. When I stopped trying to make Christianity my worldview, life started making more sense. I began recovering from the depression that gripped me with suicidal force and pulled me into a blackness so thick that I could feel nothing else, nothing but crushing despair and agony. I laugh a little bitterly to myself when I think that I have a "reverse testimony"; that is, I'm the opposite of the people that stand up and tell how they were tormented and miserable and did all kinds of things and couldn't find happiness or true satisfaction in life until they "found Jesus", and once they became Christians and got saved then they had happiness and peace and life made sense for the first time. For me, I was tormented and miserable and couldn't find happiness or true satisfaction until I walked away from Christianity. Finally, finally, for what seemed the first time in my life, I had peace. I was happy. And I felt guilty, because from infancy up I had been taught that the SDA church had "the Truth", and if I walked away from that I would be lost forever. I worried that maybe it actually was true, and I was going to be lost for walking away… but I couldn't bring myself to go back, to resign myself to a life of such deep unhappiness and emptiness. Not now that I'd finally started liking who I was, seeing worth in myself and seeing beauty in the life around me and before me.

I've come to the place over these past 2 years where I will now call myself an agnostic atheist. My belief is that deities are the creations of mankind, a projection, a metaphor, something we need to survive mentally and emotionally as beings of higher intelligence. Don't quiz me on facts and details-- I'm still figuring all this out, and I was never a good apologeticist, no matter what side of things I stood on. I've always had leanings toward paganism, though-- Wicca or NeoPaganism and all that, or maybe some of the New Age beliefs. As I've been doing research lately, though, I have found that even Wicca is too "religious" for me. Again, I don't believe in actual, literal deities, and Wicca calls upon the God and the Goddess as literal beings. No, I'm more interested in earth based religions that acknowledge the energy and the life forces in the world around us, in the universe we reside in, and that seeks to reach out and redirect those forces with my own will. I think that the rituals have some kind of scientific effect that we don't understand yet, and so the results are attributed to "magick". A great deal of what is done now, without a second thought, could and likely would have been labeled magick a few centuries ago, much less thousands of years ago. If you went back to 12 A.D. and had a Bic lighter in your hand, do you think the people around you would recognize the interaction of friction and heat and fuel? Nope. You'd be a wizard, a sorcerer, a speaker for the gods.

Anyway, that's where I'm at now. I feel a large sense of relief to have written all that, but I also feel a nervous quivering throughout me as I contemplate pressing the "Publish" button. What if I lose my friends? What if my bestie doesn't wanna be my bestie anymore? *sigh* But then I guess… this part of me is still there, whether I speak about it or not. If I lose friends or family or whatever over this, well… them only accepting part of me isn't enough. That's not real acceptance, nor is it real love. It's just a test I must brave, I suppose.

That in mind… there's no way I'd ever reveal any of this to my grandparents, though. My grampa and I recently got into a very heated disagreement regarding Adventists who keep the Old Testament feasts. I know several people who do, and did myself at one point in time. My point was that they are living up to what they believe is what God wants them to do. Grampa got angry because they're WRONG, doesn't matter if they believe they're right or not, and they need to give up their sin and come back to the truth of God, yadda yadda yadda. He came to me and apologized afterward, admitting that he was being very closed-minded and cruel and it wasn't okay. I appreciated that very much. But if I were ever to tell him that I'm a pagan atheist BDSMer who is heteroflexible? Yeah. He'd probably never speak to me again. I've noticed that as people age they tend to become very inflexible, closed, and narrow minded. Their way or the high way, you know? Maybe it's just older Christians, or older Adventists in particular. I mean, they've spent so long having the idea pounded into them that only SDA's have the Truth, everyone else is wrong, and that a good SDA will tell them they're wrong so that they're not eternally lost. Otherwise it's on your head if they're "lost" and you didn't tell 'em, you know? Just another reason I left. I was sick of the gut sickening feeling I'd get when I walked into a grocery store or a gas station and felt like had to pass out tracts and witness or else I wasn't living up to my commitment as a Christian, and that maybe I'd let an opportunity pass that was the person's last. You know, like they'd die in a car accident right afterward on their way home or something. I hated that pressure. I still exult in my freedom as I walk into the grocery store and know that I don't have to interact with a single damn person if I don't want to, and usually I don't.

As my friend and I were discussing earlier, things change and people change right along with them. I am a very different person than I was just a year ago, or even a few months for that matter! I feel like springtime, like a bud poised on the edge of blooming at any second, like I'm finally growing after a season of being stumped and stunted and I'm coming into my potential at last. It's a great feeling. I'm learning and expanding in so many ways, and I just want to keep going. Everything inside me feels clean and happy, despite being sick, despite my life having taken such a drastic left turn. No, things aren't perfect, and there's still stress on me and in our household due to various things (bills, illness, general relationship stuff that happens to everyone), but I know that I'm already a richly developed woman and that the trend will continue. Honestly? I feel like I'm my own friend for the first time, and I'm actually glad to know me. I'm proud of myself. Isn't that the craziest thing?

So today is the day. I'm headed to the University to see the good ol' doctors and hopefully, hopefully get some answers, maybe move forward an iota in this journey. My friend drove me, and we've been having a grand old time. She's a pretty new friend, but we've bonded quickly and have a lot in common. I really enjoy spending time with her, and she doesn't mind driving me these long distances so it's a really good symbiotic relationship.

It has been so long since I've gotten out of the house and just had fun, but when I'm out on road trips with Cheryl we have fun! Granted, they're medical road trips, but who cares? We went and got pedicures last night after getting into town because I've needed one desperately for some time. The bottoms of my feet and my heels were dried, cracked, peeling and bleeding but I can't reach my feet to take care of them anymore. (I can't soak in the tub any longer either, because I can't get myself up and out; it's too painful and difficult.) I haven't been able to bend like that for some time, just because of the spine and ribcage and stuff, and I have more difficulty bending my knees now. I ask Corey to help me now and then, but he blows me off because he doesn't want to do it, like most of the things I ask him to do for me. Massages are the most frequent request, but he finds them boring and so it doesn't happen. I'm hoping that he can learn to grow and change with the situation and become more proactive, more helpful. When we talk sometimes he says that he doesn't know what to do to help with my pain or other troubles, but that's not the truth. He knows, because I tell him. I ask for things, I don't just assume that he knows what I need. He just… doesn't wanna do it.

Cheryl and I have been talking about a very wide range of things on this trip and I've gotten to vent about the hurt and frustration I'm feeling in this season of life. It's not just one thing, of course, but a whole kaleidoscope of minor and major stings and slashes and bruises. I'm just trying to make things better. I hope it works. The best thing about our conversations that range all over is that not only are we so much alike but she understands from the chronic illness standpoint as well. Her disease came out of a long remission about 4 or 5 years ago, so she's feeling the sting of losing the normalcy and routine of the life that you lived and maybe loved. I'm going on 3 years and I still have a hard time making heads or tails of it. Yes, Friko, there is more to me than illness, but I just live those parts. I don't need to blog about them because they don't cause me pain, I don't need to sort through the feelings. A lot of who I used to be and what I used to do is gone, though, and I'm trying to figure out what fits in the gap. It hit me like a brick last week to realize how dependent I've been forced to become and that just galls. I was such an independent woman, a "doer", a travel across the country by myself, backpacking, hiking, counseling and administrating, housekeeping, job holding person who could drive herself to the store if she needed to. I can't do any of that anymore. I can hardly cook for myself these days, me who used to cook for our family on a daily basis. I'm a damn good cook, but it's too painful and exhausting for me to pull it off any longer.

So all of that is tumbling around in my mind like a rock polisher hard at work as I face this appointment. I have no idea what to expect, but I know what I'm hoping for. If they can actually definitively tell me what disease I have then logically there will be a course of treatment that will help me to at least stabilize, but hopefully to become functional again. That is what I am looking forward to. I resent my dependence and so does Corey. He's resorted to mechanical functioning and nothing I do can bring him out of his shell. He won't even say "I love you" unless I say it first; it's just a response. He doesn't kiss me, I have to go up and kiss him. It's like he doesn't want to interact with me anymore beyond a superficial basis-- I kiss him and tell him I love him when he goes to work, I kiss him and tell him I'm glad he's home when he comes home (all true, by the way). We'll fix ourselves something to eat, watch a few episodes of whatever show we're watching together, take a walk for half an hour or so, and then he retreats to his man cave to play computer games and I do whatever it is I need to do (sleep, read, slowly accomplish some chores) until it's time to go to bed. He doesn't cuddle with me in bed anymore, either. Lately there's been a teeny bit more of that, but it's because I cuddle him, wrapping an arm around him or entwining our feet like we used to do…

I don't know if it's the truth, but I feel like the health and happiness of our marriage is intrinsically tied to the state of my health. If I can get a good diagnosis and course of treatment, I can get somewhat better. Then Corey won't be as stressed or freaked or whatever he is, and he'll return some closeness, maybe? Hopefully? I'm reminded of a time we were talking about something or other and he said, partially in jest I hope/think, "I don't want to deal with cripples," or some such. I just kind of laughed, patted him on the shoulder and told him, "Sweetie… you're married to one."

I tend to get my hopes too far up in the sky and then bemusedly wander around, dripping with my own blood, when those hopes fracture and come crashing down on me to crush and transfix me. It's kind of a weakness. But is a diagnosis of what is clearly a destructive disease really that big of a dream? I mean… shouldn't it just be kind of a realistic thing to expect from life? And so I welcome you to the times and trials of the chronic illness patient.

(If you want to hear a neat song about high hopes, check out Sinatra's song about high, apple pie in the sky hopes. It's adorable.)

I'm so behind on keeping up with my favorite blogs! I'm cherry picking the ones that I want to read right now, but the list just keeps getting longer and longer and I'm not certain I'll make it through the entire set before I'm asleep again. (It took me nine hours to check my Facebook notifications the other day because I couldn't stay awake long enough to check more than 3 or 4 at a time!)

I've been fighting fatigue. Bad, bad fatigue. The kind of fatigue that you don't actually fight, you just accept as reality and accommodate as much as possible, because the need for sleep is overpowering and overwhelming and can come on you with just a moment's notice. There is no way I can drive in this condition, as I find myself falling asleep in the midst of the most ridiculous, mundane tasks-- eating a bowl of cereal (spilled all over myself because I nodded off), going to the bathroom (almost fell off the toilet), standing in the kitchen and holding a conversation, pretty much any time I sit down for anything, and even a tad while out for my evening walk with Drogo. It's far, far past ridiculous and well into debilitating. Let's just say that this is further proof that my body refuses to do anything halfway.

It's a combination of the high levels of pain killers that I'm on and the other new meds and also the shifting weather of this time of year. I know it's not just the pain meds, as I went several weeks a little more tired than normal but not slammed with fatigue like this. It's always hard when you have to make adjustments to the regimen, but I'm confident that things will get sorted out in time. It's just the waiting for it all to settle down that's difficult. I feel like I've hardly seen any of Drogo at all, between his odd work schedule and my complete inability to stay awake for more than 15 minutes at a time. We may live in the same house but there's so much more that makes up a relationship and I miss him terribly!

The pain, however, has been good. I wasn't sure I'd ever be able to type those words again, but there they are! (pop the sparkling cider, throw the glitter and sparkles and confetti- careful not to get it in the cider!- and call in the dancing girls!) Last week was still very painful, but bearable, but this week has been, well… nice. Maybe it's because I've been asleep so much that I haven't noticed the pain? I dunno. A funny phenomenon I've noticed, though, is that now when my pain dips down below "I'm in extreme pain" levels it's almost like my body then ceases to realize that I'm still hurting. I mean, it's there, I can feel it, but suddenly it's not important anymore and now I expect myself to function at a higher level. Does that even make sense? I suppose it's because I've been in crazy high pain land for so long that dropping down to less severe levels feels like a picnic. Like a paper cut vs. a broken arm. (Well, okay, to be more realistic, like a stitched up gash vs. a broken arm.) And I honestly don't know what to do with myself. I feel like I'm malingering now if I insist that I'm still in pain and need pain killers, because I'm so vastly better compared to last week even. I know intellectually that it is continued, routine use of the pain meds that will keep me at these levels and hopefully take me down to even less levels of pain, but I do feel like a medicine chaser now, I do.

All of this brain stuff that goes along with being sick… it's too much for me to figure out. I need a shrink to help me wade through all of this and made sense of it.

Even as I type this, I feel myself flagging and growing more and more tired. I expect that I'll be close to napping again here in a few minutes, so a few quick updates…
-The craft business is getting off of the ground! I've made a friend here in town who is going to go in on it with me and we'll share the table. She's sold before, so there's the benefit of experience, plus she can give me a ride and load/unload the table, which I'm unable to do. I've been busy making all sorts of adorable little things to sell, and I'm excited.

-My neurologist thinks that I'm definitely doing the right thing in pursuing an EDS diagnosis down at University of Arizona, and encouraged me to keep going for it. I see him again in 3 months, and he put me on a medication that should help with the twitchies a bit. That's one of the meds making me so sleepy.

-My psych put me on an antipsychotic to help stabilize my mood and keep me from hitting those more manic-type highs, along with refilling my antidepressant. The term he used is Mood Disorder Not Otherwise Specified, because my case is too complex to be cut and dried anything. He is going after genetic testing to see how I metabolize medicine and if I'm missing any enzymes or anything that might be altering the optimal flow of medication in my system. That would potentially also explain a lot when it comes to my needing crazy high doses of painkillers to make any kind of a difference.

-This weekend is a party/get-together for the BDSM community here in my town, and I'm super excited to attend. I've never been to one yet, as there's not a whole lot that happens in our scene here (it's pretty small) and Phoenix or San Diego is a long way to travel for us right now for anything other than necessary doctor's stuff. Pleasure trips are out of the question. I am going to the secondhand store tomorrow to scrounge up something super sexy and smokin' to wear. Drogo will be wearing his standard jeans and a t-shirt, I imagine. I am nervous, but I know a few of the people there, and Drogo will be there, and I can leave whenever I want so it's not that big of a deal. I'm thinking that maybe we'll finally find a willing lady to play around with Drogo and I once in a while. It's been a long, unfruitful search so far, and every possible candidate has simply left me hanging after stringing me along for a while. If this is what men go through when trying to woo women, I feel sincerely sorry for them. It is frustrating beyond all reason to have a girl act as though she is interested and spend some time getting to know you and then BAM! You never hear from her again. She doesn't return calls, emails, texts, nothin'. No explanation. I don't get it. Women are confusing, bottom line. Poor men; you have my sympathy.

-I found a great supplement/multivitamin that is soy and gluten free, so I've started that up to nourish my body while it fights for health. I realized that I wasn't supporting it in that way, which is just silly because I need supplement support more than the average person would! So I'm pleased about that, because it also keeps me from having to buy all of the vitamins and such I was taking separately and saves me money!

-Disability is still out for review. I intend to call sometime this week and check on it to see about how much of a way we've got left, if they can tell such things.

And sure enough, my eyelids are drooping, it's getting hard to focus my eyes, and my head is getting fuzzy. Time to wrap this up and hit the sheets, the nice quality sheets that I scored for a super low price thanks to that Kohl's cash they send out and a friend's coupons that she sent me. They are the nicest sheets I've ever owned, and I love sleeping between them! Next thing will be to get some decent pillows, because ours are completely flat and lumpy and just worn out. Not good, not good at all. Pillows, and then a pillow top for the mattress, and then a good sturdy comforter for the bed. That's the plan for the next few years. I'll have to do it a bit at a time, but it'll get done. A good night's rest is essential to daily functioning!

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. :'(

Right, so up until this point I've simply been using first initials to denote certain individuals that play prominent roles in my life. (Unless they die. Then there's really no point in preserving their anonymity.) I do this out of respect for those I write about, because sometimes I share personal things and if they're at least semi-anonymous it's better for their reputation. (And yes, I know I've made a few slips here and there but mostly with C, I think, and he really doesn't care, so eh…) Also, when I first started blogging, even my identity was a super-secret because of the nature of the environment in which I found myself. If anyone from the church I was affiliated with had found my blog and read the anger, doubts, fears, humanity in those posts… I probably would have been politely and passive-agressively asked to leave. And also to never teach their children again. (Granted, I probably didn't come off as perfect in the daily performances as I would like to think that I did, and I can think of a couple of pretty obvious slips I made, but overall I played the part of Pristine Bible Worker and Youth Leader very well. Mostly because I really wanted to be that person so very, very much.)

Now, though, it's gotten to the point where even I am confused by which J is which and who is L exactly and why are there multiple M's scattered throughout your days? To offset this confusion I have decided to employ nicknames, which I believe will help clear things up considerably. Unfortunately for you all, this decision will not be retroactive in any way, because going through 900+ posts to change names? Yeah. Right.

That being said, here's the cast of characters that make frequent appearances in my life and writings. I'll introduce them with the initial they're currently known as, add a brief description of their relationship to me, and follow that with their new name in parenthesis.

C: Husband, lover, gamer, science geek, and determined to rob my life of all sparkles and brightly colored things. He will, however, replace them with wrought iron and soft pillows in dark colors. (Khal Drogo. No jokes about pillows! May also be referred to as the Dragon, depending on my mood.)

J: Bestie, former roommate and fellow graduate of SOULS, ridiculously intelligent and well spoken and enjoys puns as much as I do. (Desert Rose, or just Rose)

Mom: Pretty self-explanatory. Hard to pin down, artistic, creative, intelligent, eloquent, Jack of all trades. (Mom)

R: (Ex) Step-dad, whom I've accepted as my main father figure. Reliable, moody, earnest, crazy smart, authentic, loyal, intensely compassionate towards those he loves, stubborn, wise. LOTS of life experience, some of it quite amusing and some of it jaw-dropping. (Military men. What're you gonna do?) (RDad)

T: Biological father. Don't know much about him (yet), but he seems intelligent, funny, caring, and generous. Also a military man. (BioDad)

K: Younger sister, was very close when we were younger but drifted apart. We've gotten closer again in recent years, which I'm very grateful for. Used to be a snarky, sarcastic bitch with a very dark sense of humor, now she's just sarcastic with a very dark sense of humor. (She's mellowed out). Mother to my first niece, S (Peanut), gamer, seeker of life lessons in unlikely places, and surprisingly responsible. (Pickle Buddy)

Jr.: Younger brother, very affectionate, caring, and honest, gamer/gamer culture geek, very funny and loves to bandy jokes (especially word play jokes), incredibly smart with a great memory for knowledge, has the makings of a musical virtuoso but untrained. (Jr.)

J: Youngest sister, so much like me it's freaky, beautiful, intelligent, wise beyond her years, determined to make her life better and break our family's curse of trauma, abuse, and mental illness, is very good with kids and loves working with them. (Jewels)

J: Adopted sister, talented artist and musician, happy newlywed, and super domestic/crafty/country/thrifty/dependable. Part of the S's. (the Dentist)

K: Adopted sister, talented musician of many mediums, determined, kinda stubborn, and set to be wed this summer. Part of the S's. (the Musician)

C: Adopted mom, widow of David S, spunky, sensitive, pragmatic, and unstoppable. (Wassail)

Guy M: Part of the Inner Circle, adopted brother, accomplice in musical endeavors, has a ridiculous memory for anything he's ever read, ever (especially game stats), and super man-sassy. (Kenobi)

Girl M: Part of the Inner Circle, "sister from another mister", fellow Spoonie and mentor in the ways of all things explicit. (the Gypsy)

D: Brother in law, very much inexplicable and unexplainable, incredibly intelligent and hilarious (a fabulous mix, by the way), responsible. (the Gamer)

E: Friend, (former) boss, started and runs the HJ (the local non-profit that helps abuse survivors), sassy, super Hispanic mama type, doesn't know how to stop working, the biggest heart on the planet and the biggest hug. (Star)

L: Super sweet local friend who moved way far away, honest, loyal, and committed to growth as a decent human being (a rare thing). (Fievel)

E: Another super sweet local friend who has kind of taken me under her wing, very giving and thoughtful, funny, and sees life through a different perspective, doesn't judge negatively at all.. Committed to her values, but is like a cool, refreshing splash of water. (The Artist)

BJ: My second mom growing up, very dedicated Christian, quite conservative, very loving and giving and intent on seeing all her "kids" (biological or otherwise) living good, Christian lives. (the Nurse)

C: A friend I made while going for the massage program at the college. Determined, smart, the most giving person ever, perfectionist, persistent, caring caring caring. (Mama Bear)

G: My main abuser and also ex-step dad. Sent him to prison for a long time, and I don't like him at all. I won't waste a nickname on him. He's going to stay G.

Dear Dr. L,

I feel as though there are some things that need to be clarified that have been impairing the
effectiveness of our doctor-patient relationship. I am open to the fact that I may have misunderstood
things, and that you may have been working with thoughts and motivations completely unrealized by me. If that is the case, I apologize. However, I do not feel that maintaining my business with this
practice is in my best interest as a patient. In the past year that I have been a patient of yours,
my overall health and subsequent quality of life has decreased to such a point as to be laughable, if
one were not too busy crying and pitying me. Despite seeing me regularly through this time, the
records of my visits routinely note that "the patient has no difficulty performing daily activities",
despite my consistent and frequent protestations to the contrary.

My husband brought up a very poignant illustration of just how far my health has deteriorated. This
time last year I could almost hike to the top of Telegraph Pass, he said. Now, I'd be lucky to make
it out of the desert parking lot and up to the trail before having to turn back from pain, fatigue,
and general weakness. I have continually emphasized how regular, normal activities are becoming harder and harder for me to perform to the point that I am at the point of almost total debilitation, yet I do not feel that I am being taken seriously. Perhaps the blame lies with me in not being clear enough
about the severity, frequency, and variety of my symptoms, but the sense I get is that I'm being
dismissed. It's like if I come in and say, "Oh, my sickness is at a level 7. It's debilitating, it's
ruining my life," you take it as my sickness is really only at a level 4 and I'm not really that
impaired. I even brought in that "FMS Rating Scale" in an attempt to get you to understand the
severity of my pain and other symptoms.

The short period of time that I was using prescription pain killers in excess was a desperate attempt
to to control and somehow manage this pain; to get back to a somewhat normal standard of living. I
have, I thought, been very clear about the profuse, intense, and increasing amount of symptoms that I
have to deal with, and the disability that has come as a result. I feel that not only is my sickness
not being taken seriously enough, but I feel that the measures I am taking to cope are being
dismissed as exaggerative, such as the need for further pain control or for mobility assistance
devices like my walker. I am not sure how you were unaware of my having it until now, as I've brought it to several appointments with me, and I have had it since last December. I bought it for the plane trip back to W to visit my folks. I knew that I did not have the physical endurance to both walk
through the terminals and carry my bags without becoming so ill as to be rendered immobile. The cold of a W winter, and the fact that I was not yet on pain killers, forced me to use it for mobility's
sake while I was there, as I could not walk normally due to pain. (This was back when the pain was
localized mostly in my lower half.) When I got back home, I didn't use it for a while, feeling that I
did not need it for basic mobility. After a time, I began using it when I knew that I would be
standing or walking for a long period of time, and the pain from that would make moving very
difficult. It was also handy for the fatigue that accompanied long periods of walking or standing. As
time went on, my pain increased and my endurance decreased, and I began to use the walker more and more. My husband got me the walking stick that I think you remember so that I would not have to cart the walker around and endure the stigma of a young woman with a walker (no matter now neatly
decorated), but that way I still had something to help with mobility issues due to pain and fatigue.

That worked well, until recently the pain in my hands became so great that using the stick is out of
the question, and I have come to rely solely on the walker as my means of mobility aid. I explained
to you at the last appointment that I use the walker to help with balance, to help me walk when pain
affects my mobility, and to provide a resting place when fatigue/nausea/lightheadedness overwhelm me, which is frequently. My endurance is at the lowest it's been, and a simple grocery shopping trip of half an hour requires several rests, sometimes ending in my husband or a friend wheeling me around on the walker like it's a wheelchair because I am too sick or in too much pain to walk myself. That happens more often than I'd care for it to... as in, it happens on a regular basis.

Another concern of mine, beyond not being heard and/or dismissed is what would appear to me to be
false reports in my records. In the "Rheumatologic Exam" section of each appointment, results for
various examinations are listed as though the exams were performed at every appointment when this has not been the case. I recall only 3 appointments at most in the entire year that I have been seeing
you that I have been touched or manipulated in some way for an exam; certainly not at every single
appointment. It troubles me that at every appointment my joint and flexor tendon examinations have
results reading "Normal exam", yet I was never examined. The trigger point examination notes diffuse trigger points throughout, but I am not re-examined for this (though it's true). Also, I noticed on my chart that I have an assessment of "fatigue with polyarthritis". Why has polyarthritis never been mentioned to me, and why are we not addressing it if it has been determined that this is an illness I'm dealing with? You have seen my health declining rapidly over the past year, yet it would appear that an apparent lead to managing my symptoms is being ignored. I need an explanation on this. Even my general practitioner, whom I saw recently, is alarmed that no further diagnostic action is being taken given the decline of my health and the elevated titers that sent me to your office in the first place.

I do feel a little more as though you appreciate what I'm telling you with the hand x-ray and
ultrasound that was ordered, but this seems to me to be the first decisive action towards further
exploration of my condition in a long while. I understand that the diagnostic process takes time,
especially with the types of diseases that often mimic one another, but surely there must be a more
aggressive manner to pursue diagnoses? I feel that the symptoms that I bring up are casually
acknowledged and then dismissed. You sprang into action when I mentioned hand pain, but what about the insane spinal pain that I've been telling you about for several visits? It concerns me, but it is
not even mentioned in the notes. The fact that I have recurrent fevers and sores of the scalp, mouth,
and nose seem to be of little to no consequence to you. That you note that I "insist" that certain
symptoms are related to autoimmune diseases makes me feel like I'm seen as some patient who decided she had something she found off of WebMD, not to be taken seriously. My general practitioner affirmed my inherent understanding of my body and the autoimmune connection right away, and while she corrected me on some points I still felt heard, understood, and that she was taking action on my behalf and had my well-being in mind, which I am hard-pressed to say about the care I have been receiving here.

My husband made an extremely valuable point, though, which is that when you see me, I am at my
"best". I'm out and about, I'm dressed, I've got my makeup on, and I'm running on adrenaline to make
it through being out of the house. You see me when I'm "okay". I'm sitting up, smiling, talking,
cracking jokes... it seems that I'm doing okay. But you don't see the aftermath. You don't get to see
that I barely make the drive back home and then crash on the couch for the rest of the day. You don't
get to see the pain spike because I used my energy reserves for the day at that one appointment, or
the fever that comes with overexertion (or for no reason at all!), or the nausea and dizziness that
keep me prone even if I weren't so bone-tired and wracked with pain. You don't see any of that. You
see a relatively happy, healthy looking girl who wanders in with a walker. So I see why you might not
be taking me as seriously as you ought to.

If we do end up working together again in the future, I want you to take me seriously when I tell you
that I am seriously impaired and that I live with devastating pain on a daily basis that is not
adequately controlled by pain medication or the alternate coping methods I employ. I need you to
understand that I am worsening over time, not getting better, that I am alarmed by the rapidity and
severity of my symptom development, I worry that I will be completely disabled in the near future and that my life has literally been ruined by whatever is going on with me. I want you to understand that while it's easy for you to listen to my litany of problems and then wave me out the door, I have to
live with every single one of them, every moment of every day. Nothing we have tried so far has made any of it go away. I want you to realize, truly realize, that I am becoming increasingly desperate
and unsatisfied with my quality of life, and that depression is becoming a major problem for me. This
is why I am seeking help elsewhere.

So I have a "confession" to make. (I put confession in quotes, because the word connotes the sense that I've done something bad that I am admitting to, but I don't consider this particular thing to be bad, actually. It's just the word that most accurately conveys the type of discussion I'm about to have with myself.)

I'm done with Christianity.

I went to church a week and a half ago, and it was nice to see all the people that I'm familiar with and that care about me. That was the good part. I did get sick and have to leave just a few minutes into the sermon, but I kind of expected that. What I was looking for was... I dunno. Some kind of fulfillment. I have so much nostalgia attached to church and the singing of hymns, of listening with rapt attention to the sermon and following along in my Bible. I miss that culture sometimes, I really do. SOULS was a good time, despite all of the difficulties I experienced and the twisted ideas I came away with. I miss the camaraderie, the  passionate pursuit of a common goal. I miss the music. Oh, do I miss the music... I miss the intellectually stimulating conversations, the inside jokes, the whole culture of Adventism. I miss belonging to something.

But I didn't find that when I went to church. I didn't find anything but my friends, and even that wasn't enough. I watched the service through new eyes, and I was disappointed to find that it no longer seemed to fit in with the reality of my world. I wanted it to. I wanted it all to make sense like it used to, but it just didn't. It doesn't. But I was willing to overlook that, to try to get back into it.

Today, though, E and I went to one of the high risk charter high schools to do a presentation on teen dating violence. While we were going through the teen power and control wheel (see picture below), we were talking about abusive control. E was talking, and she was describing how a partner manipulates the other with, "If you love me, you'll _______" to get them to do what the abusive partner wants. When E said that phrase, "If you love me," the words that immediately leapt to mind to complete the phrase was a Bible verse-- John 14:15. "If you love me, keep my commandments."

That's a sentiment that's always kind of bothered me. That, and the follow-up chapter, John 15, especially verse 14: "You are my friends if you do whatever I command you." Well, duh. Of course I'd be friends with someone if they did whatever I told them to! That's always what I thought when coming across those verses, and it bothered me.

Don't get me wrong-- I think the Bible has a lot of good things going for it. There are plenty of fabulous principles to live your life by. Waiting until a mature, monogamous, long term relationship to have sex? That's good sense that's been backed up by neuropsychology. Not killing other people? Yeah, that's a pretty good idea too. Taking care of your body, treating it as a temple, a special thing? Also a great idea.

But the more I learn and heal from my past abuse the more I see why I've had such a hard time dealing with God and religion and church... because there are so many abusive, controlling overtones and triggers. Sure, some people can deal with it, and that's great. My friend J? Religion works for her. The God thing works for her. That's how she lives her life, and she's a fantastic person, and I'm really happy for her. But I just can't do it. I can't get behind someone that says, "If you love me, you will do _______." John 15:10 says, "If you keep my commands, you will remain in my love, just as I have kept my Father's commands and remain in his love."

"I will love you if you do what I say. If you love me, do what I tell you to." No. I don't think so. Sorry.

So I guess that makes me an agnostic now. I believe in a higher power, though whether that's an actual conscious intelligence or just the greater balancing force of the universe, I couldn't say right now. But I definitely believe there's more going on than just our teeny tiny little humanness down here on Earth.

Maybe someday I'll get back to Christianity. Maybe I won't. I couldn't say for sure right now. But I am relieved to have made up my mind one way or another, though I didn't expect it to come so quickly and decisively, and definitely not in the middle of a session on teen dating violence! What a place to have an epiphany, huh?

I'm not going to go announcing this from the rooftops, but I just hope that I don't lose too many of my Christian friends over this... but I guess that if they don't love me if I'm not a Christian, then a.) they weren't really my friends in the first place, and b.) they're not living up to that Christian standard they profess? I know I won't have any problems with my atheist or pagan friends. Shoot, they'll probably be happy for me. C says that he's glad that I'm getting stronger. What he means by that is that I'm thinking for myself, making my own decisions despite the possibility of disapproval from others, and I'm not doing the codependent people-pleasing thing any longer. I'm glad, too. Honestly, I'm scared of the potential rejection and backlash (and I'm really dreading possible evangelism attempts), but I know that I can be true to myself and stick to my guns. I can. But oh... I'm nervous. Please, nobody give me a tough time...

I'm lying here, in a world of hurt, contemplating tomorrow.

I don't understand why my pain has just been getting worse and worse, but I'm hopeful (and fearful) that tomorrow will hold answers for me. Well, truthfully, no matter what the tests say I will have answers. Either I have MS or I don't. Either it's lupus or it's not. Either they see something wrong with me or they don't. Either we know what's killing me slowly or we know to look somewhere else, to some other solution.

C seems pleased at my efforts to be healthy and live a full life in spite of the pain and sickness. We took the snake for a walk tonight, and we walked all the way down the block to the canal, then followed that down to the main road before we retraced our steps. I'm proud of myself. I've made it a goal to take a walk every other night, and C is supportive of that. I love taking walks with him, and there's no point in walking during the heat of the day anyway, so I may as well wait for him to get home before I go out.

I worked several hours today and accomplished a great deal, more than E thought I would. She had to go out and run some errands so I finished the tasks she needed done that day and just kept going with filing and other projects that have been lying around for a while. I've got more phone calls and stuff to make tomorrow, but the good news is that the board approved an hour increase for me, so I can work up to 8 hours a week now! That is, if I can physically handle it, of course. But I really want to try to maintain 8 hours a week. Not only can I use the money, but it is also good for my peace of mind and my sense of industry.

As much as I'm involved in the HJ these days, it came as a funny realization to me today that I really don't feel the need to attend the sexual assault support group for myself anymore. At least, not right now. I'm in a good place, I've got good coping mechanisms and healthy tools in my toolbox, and I'm in a pretty steady place in my life. In addition, most of my energy is focused on the fight for my physical health these days, and my emotional health is not the main priority for healing any longer. I'm sure I'll still pop in from time to time, and there may be a time when I need to go back in a more long-term fashion, but... I guess I've moved to a new place in my healing journey, one where I can give support as well as receive it. I am getting support from places other than group now, and it's enough for me.

It's funny... I was musing today that I have gained a lot from my battle with chronic illness. I've grown a lot as a person, my perspective on life has been refined and tempered, and I am much more intentional in my relationships and my lifestyle. My support network has been finely crystallized into a distinct entity, whereas before I just had... friends. I've learned a lot about boundaries and humility and accepting care from others. I've learned a lot about letting others care for me as a friend, and how to care for others in a truly open way. I've learned even more about taking care of myself in all aspects, and I've learned how to listen to myself. (Mostly.)

So no matter what answers (or lack thereof) tomorrow brings, it's just another step in this rich, tumultuous journey that I'm on. I'm grateful for it... but sometimes I wish it hurt less. In so many ways.

My friend that died was only 19. We grew up together in our small church, so even though I didn't get to know him well personally as we got older, his loss is a hard blow. He died of a single gunshot wound in the wee hours of Monday morning, and his parents are devastated.

I texted BJ yesterday, wondering when the funeral/memorial service would be. She told me what she knew, then mentioned that there was a grief counseling session for the youth of the church going on right then. Although I was grieving more for D than M at that point, I hopped in my car and beelined it over there. It was good, and I'm glad I went. We shared stories and memories of M for a good hour before loading ourselves in cars and visiting his parents to share our good memories. They were encouraged by the sharing, but I could see how torn up they were. It must be hard, to have memories of their son constantly surrounding them... even with D, I'm so far removed from the situation that my grieving comes in spurts. If I were back home with the S's, the agony of my heart would be unceasing.

The language that I'm hearing over and over again is, no surprise, that of the hope of seeing these two again. SDA's believe in the resurrection of the righteous at the second coming of Jesus, that death is but a "dreamless sleep" until then, and that the righteous will spend all eternity in heaven. I was raised hearing and reading and believing this version of things, but as I sat in that room with all the other teary-eyed young people and adults, I realized, much as I did when SOULS came last year, that I don't believe that anymore.

When C came home, I turned to him and said, "I think I'm an atheist." He replied, "...Congratulations?"

I should make it clear that C has never pressured me in any way to leave my beliefs or my church and adopt his viewpoint. He's listened to what I have to say, sat through my explanations of Bible passages and church doctrine, and even listened attentively as I read him Case for a Creator on the trip to and from the Renaissance Festival. He has not hesitated to share his side of things, of course, but his point of view is that I can believe whatever I want, but the important thing is that I believe it for myself and because I have thought it out myself. He doesn't want me to believe and follow something just because other people are influencing me to do so (which includes being afraid of disappointing people by adopting a different viewpoint). Have his beliefs influenced me? Absolutely yes, but that's because as I've begun to question and think for myself these past few years, my church's version of things made less and less sense. God made less and less sense. I began to cobble together my own philosophy, based on my observations of the world around me, and then when I was exposed to C's point of view, well... the two were very similar.

I'm not set in any particular belief system at this point. I'm still... in flux, I guess you could say. I'm not an atheist in reality, for I still believe in the existence of God, or a higher power, or whatever, but... although I believe in God, I don't believe in God. Do you see the distinction?

Honestly? I've found that I'm much happier, balanced, and accepting now that I've left Christianity. The whole "atheists are immoral heathens" thing is so not true. Atheists are some of the best people that I know. I know some really good Christians, too, but I think it has more to do with the person than the belief system. Don't get me wrong-- Christianity has a great philosophy, and if people would live life the way that Jesus espoused the world would be a heck of a lot better place. And that's what I'm trying to do-- live the life that Jesus advocated... except without the God part.

I've heard that without God you can't love other people, that there's no source of goodness without him.  Since I no longer believe that I'm an unworthy person who needs saving from myself, I'm free to see the goodness and love that I have inside of me. It comes from me, from a decision to love the people around me, and so many other people have made that decision independent of any kind of divine mandate or indwelling. Atheists, the supposedly heartless immorals, have done a damn lot of good in the world for no reason other than that they saw the suffering and neediness of their fellow human beings and wanted to relieve it.

I've also heard that being an atheist diminishes the sanctity of life, makes it just some happenstance thing that has no consequence or bearing. While I suppose that's true, in a way (for they don't believe that they are the metaphorical center of the universe as Christians do), I think it brings as great or greater a reverence for life as the belief of creation by a personal deity. Consider these two quotes:

“Every atom in your body came from a star that exploded. And, the atoms in your left hand probably came from a different star than your right hand. It really is the most poetic thing I know about physics: You are all stardust. You couldn’t be here if stars hadn’t exploded, because the elements - the carbon, nitrogen, oxygen, iron, all the things that matter for evolution and for life - weren’t created at the beginning of time. They were created in the nuclear furnaces of stars, and the only way for them to get into your body is if those stars were kind enough to explode. So, forget Jesus. The stars died so that you could be here today.” ― Lawrence M. Krauss

“We are going to die, and that makes us the lucky ones. Most people are never going to die because they are never going to be born. The potential people who could have been here in my place but who will in fact never see the light of day outnumber the sand grains of Arabia. Certainly those unborn ghosts include greater poets than Keats, scientists greater than Newton. We know this because the set of possible people allowed by our DNA so massively exceeds the set of actual people. In the teeth of these stupefying odds it is you and I, in our ordinariness, that are here.We privileged few, who won the lottery of birth against all odds, how dare we whine at our inevitable return to that prior state from which the vast majority have never stirred?” ― Richard Dawkins

The thing that really bothered me, the thing that really disturbed my previous lines of thinking, was a quote from Epicurus that I stumbled across that put a voice to the quailing doubts and angry questions I have about God. I began vacillating and questioning while I lived in ID, but there was too much at stake there for me to give full expression to most of my doubts. I broke out of one of the church's doctrines while there, and received a mighty backlash from it. That taught me not to rock the boat. But once I moved away, once the reputation of a wonderful family didn't rest upon my actions, I was free to pursue a path that made sense to me, one that resonated with both my being and my mind. I didn't come across this quote until that time, and it's probably a good thing, because if I had found it while I was still up north... I think all hell would have broken loose. It would have put me in quite the hard place emotionally and mentally, I can assure you.

"Is God willing to prevent evil, but not able? Then he is not omnipotent. Is he able, but not willing? Then he is malevolent. Is he both able and willing? Then whence cometh evil? Is he neither able nor willing? Then why call him God?"  - Epicurus [341–270 B.C.]

I guess I'll end with that. It sums it up pretty well for me.

I know that at the memorial on Friday (and whenever D's memorial is) I'll be hearing a lot about the Second Coming, and that's fine. To me, all this talk about seeing them again and Satan out there working hard, etc. simply sounds like people trying to make sense of the bad stuff that happens in the world, and clinging to a comforting thought because they cannot face the finality of loss. But I know that they really, really believe it, and it brings them comfort and hope, so... I'm not going to say a word. Not a peep from me.

To be brutally honest, though? I do miss having that comfort... the thought of seeing the ones I love again. I just don't want to truly say goodbye.

I did two things today. One was foolish, the other was brave and awesome.

We'll start with the brave and awesome. I marched my happy little self down to the local beauty school's salon and got my hair streaked with bright red and vibrant purple. How is this brave and awesome, you ask? Well, I've been wanting to do this for years, literally years, but I've been so afraid of what other people might think (because I have a reputation to uphold, you know) that I never could bring myself to give voice to my personality in that way. But I've been thinking about it a lot lately, and C agreed to pay for it, and then my massage therapist told me today to do something fun, so... there I went. I was supposed to get a haircut, too, but we ran out of time, so I'm going back in the morning. Nothing crazy, just a shorter version of the cute, choppy bob that I loved so much last time my hair was cut. The layers will really show off my new colors nicely. I'll make sure to get at least one decent picture.

The foolish thing? I marched my happy little self down to the local beauty school's salon without taking any painkillers or snacks with me, or even a bottle of water. Big mistake. (Granted, I had no idea how long it was going to take, but it was still a foolish oversight.) I was there for three and a half hours, sitting in uncomfortable chairs, holding the same position... and then I had an HJ meeting afterward, so by the time I got home I hadn't eaten in like, 5 hours. That's bad news for me. I was able to score some apple juice during the meeting, to boost my blood sugar a bit because I was shaking. That got me home, but I was so nauseous and painfully sick from not eating that it almost wasn't worth it... but the black rice and grilled asparagus that I forced down really did hit the spot. I'm super worn out, though. Skipped group. I just couldn't do it. Plus I've got work tomorrow.

It's dumb how just sitting in a chair for three and a half hours can completely knock me on my butt. I resent that. I did get to explain fibro and chronic pain a bit to my hairdresser, though. Of course, because I came in with my walker, it was a natural conversation topic to come up. It made me realize that I'm really interested in advocating for chronic invisible illnesses in my community, but I really don't know how to go about doing it without seeming like I'm complaining or throwing a pity party. I'll be mulling this over, I'm sure... keeping my eyes out for ideas and opportunities.

Despite my mistakes, it was a pretty good day. I'm happy. In a hell of a lot of pain and thoroughly exhausted, but happy.

You know what I've realized? My diet is pretty pathetic.

I mean, it's not that I eat unhealthfully, per se, but I know that it's pretty unbalanced. How's that, you ask? Well, I pretty much just eat the same things all the time right now, and even though they're "good" things, constant repetition is not exactly your friend when it comes to meeting nutritional requirements.

It started when I cut out gluten and soy from my diet. That helped some, but I was still in a lot of agony a lot of the time... plus I didn't know what to eat. In addition to that, I was at a school where meals were prepared en masse and served up at certain times. I had very little control over my food, but I managed to scrape through... somehow.

Then I was diagnosed with a bunch of food allergies. What the heck do I eat now?!
As I fumbled my way into my new lifestyle, I had friends with experience in the allergy realm helping to guide me.

Then I moved in with the S's, and the education began. I learned to cook-- I mean really cook-- and how to feed a family. I don't think I've ever eaten so well as that year and a half that I was with the S's. It seems to me that having other people around that eat similarly to me, or that can at least help guide me (a.k.a. kick me in the butt to create real food) is a key part of my adherence to actual meal creation. Once it was just me, well... It's hard to cook for one person, especially when you're living with non-allergy people, and there's no room for you to stockpile ingredients or freezers full of pre-cooked foods. That's been the situation so far. I've moved into previously established non-allergy households, and carved myself a little niche, but I've never really had my own space to stockpile what I needed.

Once S moved out, that changed some, but I've become so sick that food doesn't even really hold any appeal for my any longer. I get hungry, sure, but that's the only reason I eat. Cooking is not enjoyable for me. It's a chore.

No, I take that back. I do enjoy cooking, but I'm usually nauseous or just plain sick while doing so, and the energy it takes just doesn't seem worth the outcome.

Also, I went through that phase where my guts were rejecting anything "heavy" or remotely resembling protein, so I've pretty much been on a tweaked version of the BRATY diet for the last three months or so.

I don't even have to take a list to the store with me anymore, a remarkable feat for my foggy self, because I know exactly what I need and in what amounts to make it through an average week. Some weeks I find myself actually hungry, and I eat more, but some weeks I find that I'm sicker than usual and I hardly eat at all. So I may run out, or I may have excess... regardless, the amounts usually don't vary.

I get 5 apples, a bunch of bananas (although there was a few weeks where I was just done with bananas), 4-5 sweet potatoes, 2-3 broccoli crowns, a head of cauliflower for baking, and 3 zucchini or yellow squash. If I need onions, I'll pick up a bag, and that lasts me for weeks, depending on what whims of cooking I succumb to. Sometimes I'll splurge on blackberries if they've got them. I've taken to keeping frozen fish fillets on hand for broiling, and sometimes chicken, but usually not. Honey and peppermint tea are kept replenished at all times, and if I have the money I get cashew butter from a store in the Foothills. Of course I need plain rice cakes to put it on, and a few bags of rice/root chips for easy "I need food NOW" moments, or when I need to take food to class with me. (Chips and an apple are easily portable and not disruptive.) At least one jar of unsweetened applesauce is a necessity, and 3 cans each of sliced peaches and pears in fruit juice. I get a bag of Udi's GF granola when I can, but I also found a new GF cereal that I like, which is handy for the mornings when I'm super nauseous but I have to eat something. Some sort of GF hot cereal, be it rice grits or Mighty Tasty Hot Cereal, and rice milk, original and enriched, if I'm running low on either of those things. Last but not least, one large container of Chobani vanilla yogurt, which I sweeten with agave nectar, and sometimes a medium container of the vanilla chocolate chunk if I'm feeling splurgey.

I already have a stockpile of rice at home, so I never need to buy that. I have a can of coconut milk on hand, should I ever get around to making corn chowder. Sometimes I'll pick up GF pasta to use in soups, but I have a bunch of that in the cupboard already.

That's it. That's what I eat these days. And it hasn't really bothered me until now, because I have this tendency to get into food ruts, I guess you could call it. I latch on to one thing in particular and eat it again and again until I'm tired of it. When I was a teen, it was toast with peanut butter, and baby spinach leaves with Italian dressing. Not at the same time, 'cause that's gross, but those were my go-to's. For a while it was boiled red potatoes with salt. When I was depressed, it would be a large container of Arizona green tea and a box of Ritz crackers.

If you ask the S's what "my food" was, they would all invariably answer "rice cakes with peanut butter and fruit". That was my thing, without fail. I finally got sick of peanut butter, and I couldn't stand the thought of rice cakes with nut butter and fruit for a while, but I'm kind of over that now. I think right now my thing is very well baked sweet potatoes, plain. Super yum. The only problem is that it takes time to bake a sweet potato, so you kinda gotta think ahead... A few months ago, I was obsessed with quesadillas for about three weeks.

But I need balance. I need more "real" foods. I just wish that I didn't have to be the one to make them :) I wish that I could just pay someone to cook for me so I can heal. (Although my guts have healed up beautifully, and I've seen the pictures to prove it!)

Anyway, I found this website/blog called 20somethingallergies, and the lady totally deals with a TON of food allergies, and it's all about eating well and real and right so that your body can heal itself. I'm all for that, but I get easily overwhelmed, and often feel judged and very defensive, even if nobody's saying anything. She straight out said on her site that there's no judging, that everyone is at a different place on separate journeys, and that's fine. I love that outlook. So I signed up for the newsletter, "Baby Steps", because that's what I need. Baby steps. One little change at a time. Maybe starting with cooking a "real" meal at least twice a week... and making big batches to freeze the rest for another time.

Drat. Now I'm hungry... and none of my sweet potatoes are baked up. I guess that means cereal... since I ate my salmon and broccoli earlier, and I have no rice cooked, either. Plus it's Grocery Day (um, night? We go when C gets home from work), so I'm running low on supplies. Maybe I'll be able to drag myself out of bed long enough to make that corn chowder today? That'd be nice. I'm going to try subbing turnips for the potatoes in that soup. Though mashed turnips are NOT the same as mashed potatoes, I think that in soups they swap out pretty well.