I will be honest. I'm having a tough day today.

It isn't just the pain, though that's there. It isn't just the collection of "other" symptoms, though those are there too. (Seriously, where do these fevers come from?!) It isn't just the lag from yesterday's 4-hour-both-way rides to see my geneticist, though that's definitely there. It's just... all of it. All of it and the mental checklist and morass of file folders for undone tasks that's taking over my life and never seems to get any smaller. I have to do ______ for disability process, I have to do ____ and _____ so I can continue to receive basic medical care, and oh yeah, I have to evaluate whether I'm just not trying hard enough and that's why I'm gaining weight that I can't lose and why I'm taking money at exorbitant rates from my dad who totally deserves better and why I've doomed my husband to a life of "in sickness" with no "in health" and why I quit school and work and maybe I'm just not really trying, you know, to make the most of my days at home? Maybe I really am just lazy, and being sick is a convenient excuse to give up altogether? Maybe I'm not really that sick and I'm tricking myself into feeling more ill than I am?

I think anyone with a serious chronic illness will ask these questions of themselves at some point, especially if they've given up anything significant because of it, and especially if they're still young. I'm just having a hard time with staring down the years and wondering if I'm going to continue to decline or not. I'm doing my best not to, I really am. Sometimes, especially when you don't see any improvement, it's hard to keep at it, to take the meds, to swallow the vitamins, to do the physical therapy, to eat healthy, to look on the bright side. I'm just tired. I'm so tired, you know?

Anyway, the trip to Tucson yesterday was to see my geneticist, the one who actually diagnosed me with EDS. She had gone to a conference last month, and I was eager to hear if she had any insights for me that were new, and eager to discuss some research that I'd been doing into various co-morbid diseases and syndromes and possible other diseases that could be aggravating the EDS. (For anyone who is new and doesn't know what EDS or Ehlers-Danlos Syndrome is, the Ehlers-Danlos society has a nice, concise run-down of the various "types" found in the syndrome family. I fall very neatly into the Hypermobile type of EDS.) Unfortunately, there are no miracle cures as of yet, but she did have some interesting observations on preventative care.

The conversation we had was wonderful-- I enjoy a good discussion peppered with medical terms :)-- and I came away with a clearer understanding of what symptoms lie in the domain of the EDS, what symptoms come with comorbid diseases or syndromes, and what symptoms are the completely unusual outliers that I can focus on in a bid to find more answers about what's broken inside of me. I have a few interesting leads, but I don't really want to discuss them yet, not without further research. Something I am going to try out is kenesio tape, which I'm not really familiar with but she says is great for EDS because it supports the joints and provides compression to aid with blood flow. I've heard of it before, but not really looked into it because I'm allergic to adhesives, but I think I can make it work anyway, maybe with something like "vet tape" that doesn't have any glue. The idea is to be more proactive with splints and braces, to avoid injury before it happens instead of treating it afterward, and that's a new approach for me. I guess I hadn't really accepted my diagnosis yet, kind of hoping that it was all a big mistake or something... but if I'm being proactive about it, then that means that I accept that it's a thing, and that makes it real. It's not like I haven't done that before, but the funny thing about "chronic" is that it drags on through years and years and you have to face things more than once. I've read that chronic illness is cyclical, and I believe that the acceptance is cyclical too. Or maybe it's just a process. Either way, it just feels big and scary and I don't wanna! But on the other hand, if it can make me feel even a bit better, it's totally worth it, cause that means that I can apply that energy that was tied up in feeling crappy and making myself power through so much unpleasantness and I can use it for something productive, even if it's just having a friend over for tea.

Well, whatever. All I can do is keep trying, right? Plodding forward, one millimeter at a time, that's me. Maybe this plodding will lead me forward into a better place. I can only hope so.

…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?

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 stressed, you guys. I have prescriptions I need to pick up tomorrow, but I can't afford the $15 to get them. I have a massage scheduled for tomorrow as well, which is one of the only things keeping me able to still walk right now, but there's no way in hell I can afford that. I could get my scripts, but then I wouldn't be able to pay my phone bill… and somehow I still have to make it to Phoenix twice and LA once this coming month for important doctor's appointments. Oh yeah, and the pharmacy in LA I got my pain meds filled at shorted me (and some other patients), and I've been trying to get it straightened out since Monday, but I'm running out today and I'm afraid I'm going to end up back in the hospital again… Damnit. I just don't know what to do. What can I possibly do that I'm not already doing? 

The worst thing is how unfair this is to Drogo. He has always worked hard, saved as much as he can, been responsible with his money, and the present is no exception. He just can't seem to catch a break, though. When it seems we're about to come even and he might be able to get a handle on his bills again and even sock away a hundred or two dollars, something breaks or is more expensive than anticipated, or some new bill crops up. Without fail. He is such a trooper, but how long can he last under such a strain? The poor man feels like a failure, but he is one of the most valiant men I know. How unfair is that? And it kills me that I am the source of this pain and stress. I hate it. I hate myself sometimes for being the instigator of bills that I am.

It's no wonder Drogo and I are having relationship problems from stress. We're both freaking the fuck out, trying to figure out how to just SURVIVE. I hate this. I hate this so much. Being sick is stupid. I have to believe that it will work out somehow, someway… but I really do not see it happening at this point, and it terrifies me.

I've done what I can-- created the fund raiser, sent links/pleas to every single person on my Facebook friend list, even sent the link and an appeal to some pages and businesses that I know… asking them to at least repost the link so that someone, somewhere might see it and have pity on us. I'm working on the inventory and production for my craft booth I've got planned for this winter. I haven't even put any money into supplies-- I'm just using what I've accumulated over the years. I applied for disability and we're just waiting, waiting, waiting… what else can I do? Seriously, what else can I do???

I'm stressed, scared, sick, and generally distraught… but I still have to believe that it will work out. We're doing the best we can. Life rewards that, right? Hard work, sacrifice, integrity… those all pay off in the end, yeah? I hope so. I genuinely, sincerely hope so. 

(For a glossary of "characters" and their nicknames, check here.)

I've been putting this post off for a while, because every time I think about sitting down and typing it all out, I'm just overwhelmed with the effort that it will take and I figure I'll do something easier. Did you know it takes energy to feel things, and more energy than that to actually process them or record them? Yup. Lots of energy, both emotional and mental, and most times it's easier to just say, "Ehhhh… I think I'll go look at funny pictures of cats, instead."

However.

I do need to get this all out there, because negative thoughts in my brain are like a poison that infiltrate my daily workings without my really being aware of it, and they taint my reality. So it is important to me to get it all out there, outside of me… where I can evaluate it more intellectually, without the ineffectual whirrings and endless cyclings of my thought processes. I've been trying to get it out, verbally, with the Dragon, but that hasn't been going so well. I've been very moody to boot, because I've got all these fears and feels and crazy thoughts all just tumbling around in my head and I'm desperate for consolation and affirmation and someone to set me straight and tell me that it's all gonna be okay and that I'm wrong and I'm amazing and all that jazz… but that is definitely not Drogo's strong point. It's okay. I know who I married, and while I may be frustrated by it at times I have acknowledged from the get-go that affirmations are really just not something he does well. But since he's my husband and my mate, I instinctively look to him to fill my needs (especially as he's the one around most often), but I realized recently that I've been asking too much of him, asking him to fill a thousand different roles that can and should be filled by a myriad of people. No one person can be everything to another person, and it's silly and futile to expect that… but I kinda have been.

It doesn't help that I'm a shut-in, so unless people come to me… nothing is going on. Also, it takes energy to reach out and ask for help, and often it doesn't feel worth the effort. I want people to just know that I need help, and that I need it all. the. time. and to just kind of… do things that help. I'm tired of asking for help, if that makes sense. I just want to be taken care of. I'm tired. So tired. Tired of phone calls and doctor's appointments and medical bills and futile attempts at keeping the house tidy and being stuck at home every single day and feeling like I should be doing so much more and better when really all I want to do is curl up and hibernate and have someone else come deal with my life for me so I can focus on just being sick and hopefully getting better. (Essentially? I just want to be a house cat.)

Right. So there's all that. But anyway, I realized that the glories of the internet mean that I can reach out to my friends that are scattered across the country and dump on them instead of my husband! Genius, right? So that's kind of my plan… is to spread my woes a little more thinly and evenly across the network of "people who give two shits about me" and ease some of the tension that I've introduced into my marriage. Being married with (and to someone with) a chronic illness is hard. He's doing an admirable job. I just have a ton of feels that I don't know how to deal with and neither does he and so we're left with a bunch of elephants in the room, but if you've seen my living room then you know that it's barely big enough for the furniture we have in there much less a bunch of elephants and so it's pretty crowded and we're both on edge.

The other day we were in line at the bank and I started talking about how I feel and the negative thoughts rattling around in my head, but Drogo told me to stop talking and wait in line quietly. Why? Because what I was saying was bad and not true and he didn't feel that I should be giving power to those thoughts by speaking them as though they're reality. He told me to "write about it". So here I am. But see, the thing is, I already wrote about it the other day to Rose, so I'm going to do some copy-pasting here in a minute… but first I want to bring up a couple of things that I haven't really discussed with anyone, save Drogo (briefly) and one or two of my fibro friends (again, briefly).

I'm terrified.

That's no secret, but the thing is that there are many things I'm terrified about. The one that I haven't really voiced to many people yet is this: I'm so, so, so afraid that there's nothing else wrong with me, that it's "just fibro", and that there's nothing fixable or treatable about my situation. I've tried all the fibro meds, and they did worse than nothing. I'm still on gabapentin, a fairly high dose, but my pain is still at high levels most of the time. I stretch and exercise a little every day, I eat as healthy and simply as I can, I hydrate, I tried yoga (which I still do because I love it and it feels awesome sometimes), I tried acupuncture and massage and Kangen water and yes I take B vitamins and my vitamin D levels are good and so are all my other mineral levels… I do all the right things, but I am still getting worse and worse… and if it's "just fibro"… then it seems there's nothing I can do about it but hang on for the continued decline and hope that I die before it gets too terribly miserable. (I keep saying, "I don't know how it could get worse… how could I possibly feel worse than this on a regular basis?" And then it happens, and then I'm sad. And round and round the cycle goes.)

I'm scared that we'll never find out what is really wrong with me and I'm just going to get sicker and sicker as Drogo stands by, watching helplessly.

I'm scared that I'm going to get worse and worse and worse until I'm basically just a sad piece of meat with a pretty face that can't even go to the bathroom by herself.

And then there's the existential crisis part of things… and this is where I'm going to copy and paste from my conversation with Rose, because why explain things twice when the first time was eloquent enough?

"Speaking of rehashing stuff… I've been having a very hard time lately with my sickness and disability.

Maybe because I got the news it's not lupus… because now I STILL have no answers… and the thing that seemed to fit so well (albeit a horrible fate) just isn't, and I don't know what it is and I'm really afraid that it's all just in my head you know? That, like, somehow I'm making myself sick... And I'd stop it if I could, but I don't know HOW.

And I'm afraid that deep down I don't really want to stop it because this kind of gives me a free pass out of life, you know? And responsibilities.

Blah. I dunno. It's just so HARD to be sick all the time and not know WHY and not know how to FIX it and for even the meds that are supposed to help to not really be effective… and to wonder if I'm just going to keep going downhill until I eventually die of some mysterious cause?

And I'm just like… what kind of a wife am I? Kahl Drogo married me expecting to have a partner in life, to have babies and make a family… and he got THIS.

I feel so LOST. Especially now that I can't even do the healing journey anymore. Like, what's my purpose for even being here? What is the point of my life? What good am I? I guess it comes down to intrinsic self-worth. Now that I CAN'T do anything productive, really… who am I? What am I worth? What can I contribute to the world?

“It must be really tough to not feel like you're contributing to the world”

Yes, it is. I don't know what to do with myself besides sleep… I've started doing at least 1 run through of Sun Salutation (a yoga practice) a day, and that makes me feel a little better about myself… like I'm being more proactive about my health… and my weight.

I've gained more weight. I'm trying *REALLY* hard to see myself as a good, valuable, lovable person, but… I accomplish very little, I look different than I used to and how I feel that I should.. I basically feel like a failure as a human being and a woman.

Like, by the time Drogo gets home I'm usually feeling so terrible that we don't even have sex hardly at all anymore. And I think that hits me the hardest. I know it's because he cares about my physical health and doesn't want to make me feel worse (and sex often does have a backlash on me and I kinda flare), but I have a hard time not believing that it's not because I'm now an unattractive, heavy person.

Oh Rose… I'm just so lost right now. It's so HARD. LIfe is just HARD, and I can't understand why...

I have SO MUCH to offer the world, and I'm trapped by my body and my circumstances and it's NOT FAIR.

Like, why me? Why not G? Why not people who do terrible things?

I've only ever kicked a kitten on accident, I swear!

And I'm just so lonely...

Oh Rose… life is just so hard.

And I don't know what i can do about it, if anything.

At least I don't actually believe the person who told me that I got sick because I left God.

It's just really hard to find reasons to keep trying.. to keep waking up every day… to keep living.

And that terrifies me.

And what scares me the most is that, based on personal experience… I can only expect this to get worse. How much worse can it get? I can never imagine how I can feel worse, but then it comes and I do...

How long am I going to have to live like this? The rest of my life? Is my health just going to keep deteriorating for unknown reasons for years and years until I'm basically a pain-wracked vegetable?

Rose, I want to have kids! I want to grow a garden. I want to hike the Grand Canyon rim to rim. I want to travel to Italy with my babies and feed them awesome food and show them old buildings and wonderful paintings. I want to make my family pancakes on the weekends and keep the house clean so my husband WANTS to come home to his happy family… I want… I want so much.

I just… I don't understand. And that's okay. I know I don't have to. I just wish that I had something to cling to...

Even when I was a Christian...

there wasn't much hope for me, sadly.

Just the fear of what would happen if I didn't do it all right. I know now that that's not the way.

Someday I'll find it.

But I still believe in God… in higher purposes…

but I just don't see how my being unable to contribute to the world serves a higher purpose.

So anyway… now that we've hashed… lol. I'm just having a hard time lately. Drogo knows, he understands, and he's been good about it. Really good.

We talked about how I'm less physically capable than I was before, as much as I hate to admit it, and I need help keeping the house somewhat tidy since that is VERY important to me. (And let's face it… I have to look at it all day lol)

So now he is in charge of sweeping the floor every other day or so. And he also *finally* got on the ball about the water leak in the front yard and we went to Lowes the other day and got a rake and a shovel.

Tomorrow he will probably get some of the guys over here to help, but he's going to dig up the front yard and see where the leak is coming from and fix it. It's been a month or two in the "putting off" phase lol"

And that's where I am. I'm scared, I'm lonely, I'm overwhelmed, I'm really sick… and I'm so tired. Tired of fighting. Tired of having to fight, each and every day for… for what? I'm lost. I'm lost and lonely and fighting to feel like a decent, worthwhile human being.

And you know what else? I didn't mention this to Rose, but I'm angry. I'm very angry. I'm angry that I've been "struck down" and so many other people are free to do as they please with no physical ramifications and they feel fine and they can go about their lives and work and have fun and raise families and I can't and I don't know why and it's not fair because I'd be so amazing at all of those things!! I'm angry because the Dragon has the physical capabilities to do anything he wants… but he doesn't. I mean, he does do what he wants, but he doesn't do what I would do if I were to have his health. I'm angry that he gets to be healthy and I don't, angry that he is healthy and chooses to put stuff off anyway, angry that he's fine physically and he doesn't automatically step in and take care of me… angry that I have to ask so hard for what I need when he can so easily provide it… angry that, after months and months of asking, NO ONE in my circle of healthy friends has stepped up and helped me straighten up my goddamn craft room!!

I'm furious that I'm at the mercy of everyone around me, and it doesn't feel like people really understand that or care as much as I'd like and need them to. I'm furious at how helpless I am, how lonely I am, and how I'm powerless to do anything about it when I used to be such a powerhouse of getting stuff done and helping people and being there for others…

People I know keep telling me, "Oh yeah, call me when you feel better and we'll get together!" Folks, it's not happening. I pretty much don't ever "feel better". I have about three modes: feeling bad/poorly and worn out; feeling awful/exhausted/all I can do is sleep; Please Kill Me, You Would Be Doing Me A Mercy. So if you want to see me, you have to come to me. Come pick me up, take me someplace. Call first, see if I'm sleeping or feeling abysmal, and if I'm not I'll probably come with you as long as you are the one making the effort to drive, make plans, etc. I go with Drogo on errands on the weekends, even if I'm feeling really gross, just because I want to spend time with him and that's my one chance during the week to be out and about. I may drive to and from a doctor's appointment some time during the week, but that doesn't mean I'm "out and about". I'm trying to scrape together enough energy to make it there, get through my appointment, and make it back home safely so I can collapse on the couch or into bed.

If you miss me… show me. Come to me, because I can't come to you. A few people do. But not most of them. And that both angers and completely engulfs me in grief. I've had friends tell me, "You're isolating yourself. That's not good. You need to get out and do stuff again; get involved." Oh, I would if I could. Maybe I am isolating… but not by choice. And I'm furious about that.

So please, those reading… feel free to comment with some affirmations. God knows I could use it right now. My body always feels like junk, but it's hard to have your heart and soul feeling gross, too.

Well as it turns out, I didn't need to blog through my thoughts about what's going down with my honey. I just needed a good listening ear, sympathetic pats on the arm, and some words of sense that, yes, I already knew but needed to hear from another person. Most of my issues had to do with my being sicker than ever and wanting/needing more support from C in that regard. Mostly because I'm terrified and scared and lonely and overwhelmed. He stepped up admirably, and some solutions have been put forth that I find most satisfactory. Probably more on that later.

Also, the two M's are both making plans to vacate the premises within the next 6 months-ish. I am not pleased about this. However happy I am that they are moving on with their lives and getting out of this dead end town and pursuing their dreams and yada yada yada… I'm an inherently selfish person, and they are like, 8/10 of my support network here. They are, generally speaking, my rides places, my listening ears, my open hearts and arms, my dose of laughter when I don't feel like laughing and definitely when I do, my bawdy joke bandy-ers, and quest companions to both C and I in DnD and Magic. Whatever will I do without them? Just the thought makes me wilt inside. *sigh* But just because I'm settled here, likely for life, doesn't mean that others have to be chained here to suit my needs. It's just… why do all my good friends have to be at a distance?! J is all the way across the country, J and K and H are a full 24 hours' drive north, and the C family is hours north even of them… J and R are a state east of my family up north, my mom and the kids are all the way across the country as well, L is as far across the country as you can get from here (and is stealing M from me, that bitch! Kidding.), and E is too busy to come see me at all. If I'm not working with her I just don't see her, and we all know I don't leave the house any more.

My life is lonely. So lonely. That's part of what I was having problems with with C, is the sheer loneliness of my existence. Well, not the loneliness, but the inescapability of it all. He can comfort me and then go off and play games with B or D on the comp, but I'm stuck feeling awful. All day. Every day. It traps me, pins me to the couch or the bed, and there's nothing I can do about it that I'm not already doing. And who wants to ask people to come spend time with that?

How do I make new friends when these ones leave? They are taking pieces of my heart… but how do I find new people to fill the voids they will leave behind? It's not so simple for someone who is house bound, bed bound… Yes, I have my internet friends, but sometimes you just need someone to come over and be here with you, like M was for me last night. I'm happy for them, I really am, but I feel terribly selfish that this constitutes a personal crisis on my end of things.

Why do I have to be so all alone?

I guess it's a pity party. Why me? What did I ever do to deserve this? And I'm terrified, y'all. I'm so, so, so scared that this is my life, forever, for always… that I'll never get to really live life, not the way that I had always intended to. I won't get to travel. I won't get to work. I won't get to help people. I won't get to perform music. I won't get to raise a family. All of the talents and skills that I have are going to waste. My potential is withering like a sick plant because the body it is rooted in is inhospitable, toxic.

I realized the other day that, if I die (whether it's from natural causes, foul play, an accident, or by my own hand), C will be totally lost. It will destroy him. Do you know what it's like to basically be someone's reason for living? It's incredibly flattering, and it fills you with a sense of self-worth like none other. I mean, I'm his reason for living in a totally healthy kind of way, as in I'm his "true love" and I fill his life with meaning and joy, etc. etc. But I also feel bad because what kind of a life can I give him when I'm broken like this? He deserves so much more… Hell, I deserve so much more. We've had to deal with more in our first year of marriage than most people do in ten. I may be what gives his life meaning and dimension, as would the family that we someday hope to create, but… he kind of got gipped, I think.

I'm sorry. It just hits me sometimes… how sad I am about everything. I mean, I am such a bright, talented young woman. I am. But it seems like every single thing that I was, that I was capable of, is being systematically stripped away by this cocktail of sicknesses. My mental capacity and acuity that I was so proud of is falling by the wayside as forgetfulness and cognitive fog dominate my mental landscape. Often I have conversations of late that, later, I cannot tell whether they were reality or a dream unless there is some physical marker or transcript left behind. My vocabulary and spelling has taken a sharp decline, and I frequently struggle to find the "right" word, one that I know very well but cannot seem to access. I lose the names for commonplace things and events. The events of my own past are shrouded in mystery, lost to the gaping, fuzzy holes that have sprouted in my memory banks. It feels like my brain is made of swiss cheese. M remembers more about my life than I do because I've blogged it and he's read every single post, plus the events that he's actually been there for. J remembers more about my SOULS years than I do, more about our conversations… it's just frustrating to feel like a spectator to your own life.

All the things that I considered to be me… they're gone. Inaccessible. Stripped away, dulled down, tattered fragments. Who am I? What's the use of my even being here? At least I can still write, most of the time. My hands aren't that bad, not on a consistent basis. (Am I jinxing myself here? Ugh.)

It's just… it's just a pity party. An identity crisis. A sadness at losing two of my best friends to distance and the inevitable increase in isolation that will come with it.

On a completely different and random note, I watched Frozen yesterday, and it. is. awesome. A must-see. It's more musical than I expected, but it's very well done. Some of the songs get stuck in your head very firmly, such as "Let It Go". It's a short number, but powerful. I really like it. Here's the original song, and then here's The Piano Guys' interpretation of it, which is equally amazing.

Today is the gear-up, preparation day for The Appointments tomorrow.

As I was drifting off to sleep last night, I realized that I am very, very anxious about what is going to transpire tomorrow with the rheumatologist. The psychologist? I could care less. Well, okay, that's not entirely true. The psych will have control over my antidepressant, I'm sure, and that has definitely had an impact on my overall functioning. However, if I were given the choice between my antidepressant and my pain meds… I think we all know which way I'd go. Antidepressants, duh! (I kid, I kid!)

I just… I mean… I'm terrified, y'all. Just so petrified. So, so anxious that my symptoms will be downplayed again, that I'll be told I'm prone to exaggeration again, that my coping mechanisms will be called into question again (without offering any assistance or anything), that my pain won't be taken seriously again, and that it's going to be harder than filling a sieve with Jello to get adequate pain management again, and that I will just end up spending another year getting sicker and sicker and in more and more pain without anyone in the medical community bothering to figure out what's really going on. It's like… this could either be really good or really bad. I'm terrified. I don't know what to expect, but my experience with this stuff so far does not have me exactly resting at ease.

But… I will do my best to come prepared with all the information and documentation that I can to make this as smooth and painless as possible.

Besides gathering all my supplies for tomorrow, I'm hoping to be able to do some more cleaning and tidying of the house. Will that actually happen? I'm uncertain. The pain is pretty persistent and gnawing today, so we'll see. C helped me clean yesterday, mopping the floor after I swept as well as helping me make the bed after I washed all the linens. That has taken a tremendous load off of my mind. I've been bothered by the dirtiness of the floor for weeks now, but unable to do the task myself. Then, of course, I ran out of meds and wasn't doing a damn thing, so mopping was out of the question. Today, I'd like to get the dishes done (since I went through pretty much every single dish while sick, because doing dishes? Hah. Right.) and clean the bathrooms. Dusting would be nice, too, as well as putting away the laundry I did yesterday. If I only get one "cleaning" thing done today, though, it's gotta be the dishes. Well, that and my laundry. How I wish I could do it all in one blazing, glorious, Spring Cleaning type day! To think that I used to HATE the weekends because Mom would want to get all the cleaning that had been put off throughout the week done on Sunday, and of course we were obligated to help. Now I'd give anything to be able to take a day and just clean the house really well. Of course, I try to employ the method that Mom never quite got the hang of, which is tidying up throughout the day and week so it doesn't all pile up and necessitate an all-or-nothing cleaning binge. I'm sure it's harder with kids, but it's also pretty damn hard with chronic pain, too.

So that's the plan for today. Eat, clean, and be merry, for tomorrow I may want to die.

Oh, and quick side note of great importance? The local ren faire is next weekend! Whoop whoop! I'm so excited. I look forward to this all year.

It's weird. I don't know exactly how to explain it, but I feel so completely lost right now. I'm all out of sorts… and I don't even know why.

I'm tired. I know I'm tired. But it's like I'm so tired that I don't want to sleep. And I'm hungry (I think), but I don't feel like eating.

Also, I'm worried about meds. The perennial, anxiety-inducing worry of mine. I have pain pills now, yes, but not enough to get me through to see the pain specialist, even if I take them only every 6 hours. Will the new rheumatologist see that I need continuous pain meds and give me a script? Will the insurance let me cash it in? Will I have to spend a few days here and there throughout the week with little to no meds at all in the hopes that the pain docs will write me a script at our initial consultation? I don't even know what to expect. I need consistency in this, and in switching my care from the less than mediocre, I feel as though I am throwing myself off a cliff with no idea what awaits me in the abyss.

I wish I could just worry about, you know, "normal" things. Like holding down a job. Pursuing a career. Going to school. Planning a family. Taking care of my house. Saving up for vacations. Enjoying hobbies. But it seems as though my entire life, every minute of every day, is dominated by the draining, overshadowing worry of, "What if, by taking this pill to relieve my suffering now, I am dooming myself to even greater suffering in the future?" I am drained. I am tired. I am tired of worrying about how I'm going to survive. So very, very tired. I wish I had doctors that would champion for me, that would worry about this for me, or that would make the situation so that I would not have to worry.

I'm so tired… so very, very tired of being sick. Of being in pain. I'm all out of sorts. Now that the initial surge of joy from getting my pain killers has passed, the waves have receded and left me once more run aground on the rocky shoals of "what if".

Do you know what it's like to live in fear that the economy will tank, or there will be some national disaster or something because then you will not be able to get the meds that are keeping you alive, that are making life even semi-bearable? I literally live in terror of that thought.

I suspect that it's the looming closeness of the appointment with the new rheum that has got me all worked up. The unknown, it mocks me. Can this doctor help me? Will we begin finding answers at last? What is wrong with my body? Is it treatable? Is it curable? Is it fatal? Is there irreparable damage? Will you take me seriously? Will you help me, and not expect me to do your job for you? I'm so scared… scared of another dead end and even further declines in my health. How much further can I sink? Where will I go? How sick do you have to get before your body or your mind (or both) finally says "Enough!" and just stops? How miserable does life have to get before you just kind of snap and try to end your own suffering? So far I've managed to resist the temptation. It's been hard. Very, very hard. I have stayed, though, because of those who love me and want me to stay.

I don't think they realize what a sacrifice I am making for them by staying, by living in this body and abiding with this pain and sickness day after day. Every day that I am alive is a monumental declaration, a neon sign that says, "I care about you more than I care about not hurting anymore. I will continue to hurt so that you do not have to feel the agony of losing someone dear. I languish for you, dear heart, for you mean the world to me. Your happiness is more important than my own. I hope you know that." I would dearly love to put an end to my pain. Oh, yes. I would. But I care too much. I love too much. I don't have it in me to hurt the ones I love like that. So… I try to find the happiness here, with them. I try to find the smiles and the joy and the laughter. I try to find what makes it worthwhile staying here… and I have. In many ways, I have.

I do like living. I would like it better if I could actually live, I think, but it's pleasant enough. At times. It would probably be even more pleasant if I could at least have a piece of pie once in a while.

Life's been a little hard, but it's about to get a heck of a lot harder.

The rheum that's been letting me down for the past year and half is continuing her pattern with great style. I went in to get a pain killer script to carry me through to the appt with the new rheum, and she wouldn't fill it because she says it should last a month. It wasn't supposed to last a month! So anyway, I'm now jumping through a million hoops with different doctor's offices to get statements from one to go to the other so they can write a prescription for me since my old rheum is a douche… Do you know what she told me in my appointment when we were talking about possibly increasing pain killers? "I feel that addressing the underlying issues causing the pain would be the best thing for you."

No… you're kidding. Hmmm… Isn't that maybe what I've been paying you to do for the past year and a half?! I am livid. I hold her responsible for the state of my health and how far it's declined. It's her fault for not pursuing diagnostics to figure out what the hell is wrong with me, and now she's screwing me over on something that I desperately need. I am not a happy camper.

So I've been really really good about my pain killers, taking them as prescribed, but I will be running out on Sunday, because that's just when the script expires. Monday is a holiday, so the doctor's offices won't be open, and the one that I'm waiting on right now told me "sometime next week".

Dear god… They have NO idea how sick and miserable I'm going to be. They just don't know. And I'm terrified… because I'm already so sick. My levels of pain and other symptoms are approaching what  I was experiencing when I was off of the meds, so I'm sure that these days I'm without meds will be a special kind of hell.

The worst part is that this is absolutely not my fault, none of it. I trusted that doctor's office over and over again, and they have let me down over and over again. I feel… betrayed? I feel… taken advantage of, I guess? I mean, I'm the patient. I'm relying on them completely for my care. I'm powerless. I can't diagnose or treat myself, and I certainly can't write my own prescriptions. I'm in their hands, and they just dropped me. Again. I'm outraged. I'm incensed. I'm broken hearted. I'm facing an interminable stretch of horror because of… because of… ?

This is not gonna be fun. You probably won't be hearing much from me. I am just hanging in there until the appointment with my new rheum… hanging onto hope that maybe this time, maybe this doctor can help me figure out what the hell has gone wrong with my body. Oh! I also got a call from the hospital in the big city and they set up my initial appointment with a psychiatrist as well. It'll just be one fun-filled day, I'm sure. The psych appt is after the rheum appt, so if the rheum proves to be particularly disappointing I have a professional to cry to. That's something at least. Heh.

I got a notification last night  that I had received a comment on an older post of mine. I LOVE getting comments (kind of feels like when you get a letter in the mail, you know?), and this one stirred me pretty particularly. Cherryblossoms wrote to me on the post "God won't protect you… or will he?" from May of 2012. This is what she said:

"Hi cassandra, i see ur blog was written a while ago and i just gotta say it REALLY spoke to me. I have not faced abuse but emotionally i resonate with all your struggle in trusting God. I've had a chronic illness for a while and last year was really...really hard. Suicidal at times. And in retrospect i can certainly see where God provided for me but like....exactly like u said, i didnt feel protected. and then i thought well...was i promised to be protected? and if i'm not how am I supposed to trust someone who doesnt seem to bother to protect me, if He could? I mean i sure wouldnt trust another person who did that to me, stand by and do nothing when maybe they couldve done something. And if it was all to teach me a lesson....well okay...did my suffering have to be that overwhelmingly painful just for me to learn something? like really? and im still not sure about what i learned. i have vague ideas. mostly i just think i learned how to be real pissed off all the time. and like u i sit here and think, im such a bad christian! i feel the same. how do i tell people jesus loves them when i still feel hurt for feeling abandoned? Anyway, i wanna know if , since time has passed since this post...if u've found wisdom or solace or anything u can offer me. hopefully u see this comment lol. anyway, take care u sound like a lovely woman nonetheless < 3"

I, of course, had to reply…

"Life with a chronic illness (or more than one) is hard. Period. And I think that some emotions are universal, regardless of abused/not abused, etc. Have you ever seen The Princess Bride? One of my favorite lines from that movie has always been when Wesley, under the guise of the Dread Pirate Roberts, tells Buttercup, "Life is pain, Highness. Anyone who says differently is selling something."

I can't say that I've come up with any answers… or wisdom… or solace. In fact, I don't even consider myself to be a Christian any longer. I just couldn't reconcile my experience with the facts presented in the Bible. I may come back to it someday, I can't really say… but at this point, I'm more of a quasi-Bhuddist/skeptic/deist/agnostic. Still figuring it all out. What I HAVE decided is that God wasn't responsible for my pain, I don't think. My abusers made the choice to be world class jerks, and the responsibility of my pain lies with them. Could God have stopped it? Maybe. Did he? Not that I'm aware of. But, basically, I've learned to live my life from the inner strength that I possess within myself, and the strength and hope offered to me by the people I've surrounded myself with. 

Now that I'm an adult, I can choose who I let into my life for the most part. I had no choice as a child or young adult whether to let those painful, toxic people into my life. So I surround myself with people that will feed my soul, and I stand amazed at the fact that they seem to feel the same way about me. I am learning to own my own strength, light, and love, rather than dissembling and deferring with "humility" and giving God all the credit. You say that your last year was really hard, and you were suicidal at times. (If you read some of my more recent posts, you'll see that I've been there at times lately as well.) But… you're still here. You chose to fight, to hang on, to believe in hope (maybe), and it's that strength within you that will carry you. Find hope where you can and where it suits you best. If that's in church and a belief in God, then more power to you. I have found, though, for myself… I have found that I lead a happier, more peaceful, more fulfilled and strong and hopeful life as a non-believer than I ever did as a Christian. I know that's blasphemous to some people, but it's the truth. It's safe to say that I'm a better, more authentic person now than I have ever been before in my life.

I have no idea if that addresses any of the questions floating around in your heart, but it's all I've got to offer. Thank you for the comment-- it really brightened an otherwise crappy evening (feeling VERY poorly, physically), and I hope to see you around. Oh, and thank you for the compliment :) I hope you see this!"

I've held back from outright stating some of this stuff, because honestly… I'm afraid to catch flak for my new beliefs (or lack of them, I should say). Since I spent so many years immersed in an intensely Christian culture, an overwhelming majority of my relationships and friendships are with people who are staunch Adventists and who feel that everyone should be an Adventist. If you're not, you're lost. And I really, really don't want to deal with the stigma or evangelistic efforts that would come with such an admission. I mean, if we're being honest here, it's not a state secret. It's pretty plain from my Facebook page that I've changed my stance on a lot of things, without my ever having to say anything. But I want to be seen as me, as a person, as Cassandra… not as my beliefs. Not as my religious affiliation. 

Did I tell you that when I "came out" to E about my lack of Christianity, she seriously considered asking me to resign? Why? Because our organization is faith-based, and we, the leaders, must set the example. I personally think that the organization is stronger for having a diversity of beliefs and religious convictions, as the population that we are trying to reach doesn't all fit into the standard Protestant mold. It's unfair to expect them to, and I think it's unfair to require the staff to all have the same beliefs and life choices. I mean, I totally respect other's beliefs. I have no problems with you if you're Christian, Pagan, Muslim, Greek Orthodox, whatever. It doesn't matter to me. As long as you're a good person (wherever the catalyst for that comes from) and you treat others with fairness and respect, we're good. I could wish that the same attitude were applied to me. I don't want to be discriminated against for my lack of Christianity.

And, honestly… I'm afraid. I'm afraid to lose friends. I'm afraid of being judged, of being attacked, of being the target of some campaign to change how I feel and think and believe. I have my reasons for my choices, and it feels so very invalidating for someone to assume that they know better and that if I only listened to them I would see that I am being a fool and need to come around to their point of view. I also hate the pity that is reserved for "the lost". Please, please, please… just treat me like a human being, yeah? My bestie J is a marvelous example of how the relationship between believers and non-believers should be. She sees me as a person, not an evangelistic target. We discuss religion and God and exchange thoughts, theories, viewpoints, etc., but at the end of the day we both respect each other's choices as valid and reasonable and know that the other has perfectly legitimate thoughts and feelings that went into those choices. My other friend H is a good example of this as well. It is kind of sad, though, that I find myself so appreciative of interactions that bear the mark of basic respect. I wish it were a more common thing, and that I didn't find myself living in fear of the Christian community, or the conservative SDA community, to be more specific.

My guts are bleeding again. This concerns me.

Also, I have been in large amounts of pain for the past week or so, and I'm trying really hard to be good with my meds because I know I can't afford to run out… but sometimes I have to take a pill early to fend off a massive pain storm and I end up taking one or two more than my allotted daily dosage. I know when the pain storms are coming, though. I can feel it, and I have to take steps to forestall it or else it will take massive efforts to tame it once it's roaring, if it can be tamed at all.

I don't know why I'm hurting so much. I don't know how to stop it. My pain coping mechanisms are failing me, and I'm not okay with that. Pills every 4 hours was okay at first, but now even that is insufficient.

As I said… this concerns me.

I will speak of these things tomorrow when I see my awesome GP for a follow up on that sinus infection (that never went away, even with antibiotics.)

My poor body. It's a mess. I just wish I didn't have to feel the effects of that mess.

I really need to be drifting off to la-la-land here in a few minutes, as I've got to get up early. Why? Becauuuuuuuse.... tomorrow is The Appointment with The Neurologists. You know, the one where we go over test results and I maybe get some answers?

I feel all sorts of ways about this appointment. On one hand, I know that even if all of the tests come back normal and show us absolutely nothing in the way of what's wrong with me, that means that we can rule things out, and that in and of itself is progress. On the other hand, I am both hoping and afraid that some of the tests will show something and we'll begin to have a clue as to what ails me. I'm hoping to maybe start getting headway in treating the root cause of this ridiculous pain (and all of the other fun stuff that comes with it). I'm hoping that the doctors will be able to get me some pain management (i.e. pain meds) that are more effective than what I've got now. I'm hoping for answers, clues, hints even. Anything.

But I also don't dare get my hopes up. (Despite my best efforts, I find myself hoping for things, but I keep telling myself to stop it!) I really hate it when my hope are crushed and I am devastated. I'm afraid that nothing conclusive will come of this, that I'll still be shrouded in mystery. I'm afraid that they will refuse to help me treat my pain. I'm afraid that I've got something terrible, something degenerative, something debilitating. I'm afraid that I'm only going to get worse. I'm afraid that there's nothing we can do to help me.

I mean, there are so many "what ifs". What if it's degenerative? What if the pain never goes away? What if I can't ever have kids? Hell... what if I'm dying? Some people might think that's being a bit dramatic, but considering how rapidly I've gone downhill, how bad it's gotten in such a short amount of time... it wouldn't surprise me as much as it might someone else. My mom even said this last trip that I looked like a chemotherapy patient-- pale, weak, dark circles all around my eyes from the pain and sleep problems... She also said that she fears this is the last time she's going to see me. I can't travel long distances anymore without great difficulty, and she doesn't have the money to come out my way, so... unless I get better, we won't be seeing each other for a long time.

Do you know how sobering and/or terrifying it is to have your mother look into your eyes and say, "I fear that this is the last time I'm going to see you"? Let me tell you, it's pretty damn scary. It made me take a hard look at myself through someone else's eyes and realize... yeah. I'm pretty sick. I've gotten good at denying how sick I am in my mind... maybe to justify myself to others, to avoid undue sympathy, to keep myself from plunging into a morass of despair? I'm like, "I'm fine yo! Um... Can you help me to the bathroom?" Hah.

Anyway, I need to rest. The less sleep I get, the harder this trip will be. C's dad is taking me, which is very nice of him. We'll be taking C's truck since it gets WAY better gas mileage than R's big old beast of a truck. (Funny... both of my dads are named R now. Go figure!) C will have to use R's truck, as my car is broken and in the shop. (We're going to have to get a new one. This has been about a year in coming, but it's still not a pleasant prospect. At least I hardly drive now, so all I need is a little beater to get me to work once or twice a week and to the store if I need it. No big. It just has to have proper hvac and be an automatic.)

I asked C to cuddle me tonight, and we talked over some of my fears. He told me it's okay to be nervous, and that I'm right in thinking about it as "no matter what happens, it'll be progress". Oh, guess what? I went to my grandparents this afternoon for a small Christmas (opening presents and watching a Christmas movie), and on the ride there Grampa and I were talking about stuff. C came up, as I was talking about how incredibly impressed I am with him as a person and how he's adapted to life with my illness and how well he takes care of me and loves on me. I mean, I knew he was a great guy before I married him, but he's really blown my expectations out of the water and shown himself to be a spectacular specimen of human being. Just an all around wonderful man and husband. Anyway, I was saying things like that and Grampa jumped in with the comment that he did have his doubts when we got married (C being a nonbeliever and all that), but C has really impressed him too and he thinks that my heart was really telling me the right thing when I decided to marry C. To hear that made my heart sing and burst with pride. I love that man. He's amazing. And he has the greatest mustache ever. Even Grampa is jealous! He said so himself during one of the 3 or 4 times he complimented C's mustache throughout the afternoon. Men and their facial hair, I swear...

I asked C to tell me some optimistic stuff about the future, to allay my nervousness and all. He looked at me, blankly amused (he's terrible at off the cuff stuff, especially optimistic or complimentary stuff), so I whispered a few prompts to him. "Tell me it's all going to be okay... and that no matter what happens you'll be here... and we're gonna be alright..." He then kinda stuttered out awkwardly, "I'll be here..." (long pause) "...for you." Then we both laughed because it was so awful. I'm grinning now even as I recount it. He's so funny.

Alright. To bed with me, while I still have a smile on my face. Hopefully I don't stew over the "what ifs" too much while drifting off to sleep. I'll try not to. But oh man.... so nervous!

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 scared.

I spoke with the hospital today to set up a payment plan to pay off my debts with them, but they can only give us 6 months out to pay it off, so that makes the monthly payment over one hundred dollars. It's going to be even more after I go in for the EEG and MRI next week... it almost makes me not want to go. Really.

C keeps saying we'll be okay, and that we're going to make it. I know he's right, but I'm still... scared. I don't know how we're going to do this. We're already stretched so tight just covering basic expenses. How are we going to pull this off?

It's times like this when the thought of slipping quietly into death is so very appealing, times when uncertainty and fear are overwhelming and when it has been a long day (or days) full of grueling pain. I begin to wonder... is it worth it?

I love my life, and I love my husband, so very much, but... it feels like he'd be better off without me around.

I'll be telling him all this (probably amidst tears) when he gets home, and he'll reassure me and work out the numbers and we'll be okay, but right now... right now I'm hurting so much, and I'm scared that we're going to go belly up and maybe lose our house or something. At least we have several months before C has to start paying more for health insurance.

What are we gonna do?

Good things have happened, as well as sad things. I'll write about my birthday and house stuff tomorrow, because I'm busy with other stuff right now.

I just wanted to note that I'm being rather strongly encouraged from various sources (who know nothing of one another) to take my writing seriously, and to take my unique perspective on chronic illnesses seriously, and to do something with them that will help the world.

This means a website/blog.

Yeah, well, I feel pretty thoroughly inadequate for such a task as that. I mean, who would want to read my stuff? I'm just a lady who has problems and likes to write about stuff. Is it really worth sharing with the world? Could I really make any difference at all? Is it just delusions of grandeur, just pride and misguided intentions leading me to overstep my bounds?

Yet I am assured by my friends sitting in the living room with me that, even if something has been said a million times before, everyone relates to it in a different way. The way that I state something may be just the thing someone needs to have an "aha!" moment, when they had read the same thing written by someone else and had no response whatsoever. It's true. I know it's true.

I'm just so scared of failure... of putting myself out there and being shot down.

Scared of dreaming big.

Scared of doing something that matters.

Scared of wanting to make a difference and realizing that I can't.

Scared of being weighed and found wanting.

'Cause really? I love to help people. And I love to write. How could I  not want to combine those two loves?

Because when you put all your eggs in one basket, you run the risk of them being crushed.

Ah, well, no use running over and over my fears. I'm scared, it's true.

But I'm also very desirous of pursuing this opportunity... I mean, is it just coincidence that I'm being encouraged from so many sides so strongly, so seemingly suddenly?

My friends have come up with a domain name for me-- Fibro Warrior Princess. It's a nickname they bestowed up on me, and I love it. Then they said I ought to use it as a domain name.

You know what?

I think I'm totally going to go for it.

Watch out, world-- the Princess is on the loose! ^_^