…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?

You know what they say: A silent blog is a sign of a busy life! Well, that's sorta true in this case. What happened is that I was pounced upon by a very nasty flare, one that lasted somewhere around a week, give or take a couple of days. In the midst of that I've had doctor's appointments, medical tax stuff to hunt down and appropriate and relocate to our tax lady, a trip to Tucson for to see a cardiologist, a Celebirthsary/going away party dinner, and my second wedding anniversary. Even with all of that, I'm still pulling out of the flare, so thank goodness for that! In all honesty, I was worried that it wasn't just a flare, but rather my new mode of existence. That would have been horrible, because I was in such terrible pain that the painkillers would do nothing but blunt the edge of it a little bit, enough to keep me from going crazy and screaming while I hobble down the streets of downtown naked and slicked up with mayonnaise, which I'm allergic to.

Clearly, that didn't happen, or else the government is really good about redacting highly amusing incidents. I would say that I would remember if that happened, but that's not actually the case. Something else I've been up to in this interim (and before, if I'm being honest) is that I've been having some major troubles with sleep and sleepwalking. First the waves of overwhelming fatigue so I'm sleeping 18+ hours a day and exhausted down to the pores of my bones (y'all know what I'm talking about!), and then BAM! Insomnia. Sort of. For a day or two. But now I'm being hit with really bad sleepwalking, something akin to narcolepsy that pulls me into these dream trances when I'm tired, but when I am deep enough into the standing-sleep I go limp and collapse, usually forward, which jolts me out of sleep and usually I can catch myself on whatever counter or corner is nearby. Not always-- I hit my face on the metal shelving of the pantry last week, and my head on the bathroom mirror.

I also do scary stuff, like get into my pain medication thinking it's Benadryl or something else. I recently woke up with six 100 mg morphines in my hand, thinking in the dream that it was Benadryl I needed to take, but thankfully I was lucid enough upon snapping awake that I realized what was going on and put them back. I get food out and leave it.  I open windows and surf Facebook and all kinds of shit, and it TERRIFIES me. What if I buy stuff without waking up or remembering? I don't have any spending money! That could be bad.and screaming while I hobble down the streets of downtown naked and slicked up with mayonnaise, which I'm allergic to.

In a "dream sequence" that I vaguely remembered upon waking, I had--for some very legitimate reason, I swear--gone into the kitchen, pulled out my husband's new package of bratwurst, opened up the plastic covering, then left the whole thing sitting on the cutting board. If Corey hadn't checked the kitchen before going to bed they would have been out all night and spoiled! (He woke me when he came to bed with a forceful yet bewildered, "What's wrong with you, woman?!?") Two days ago I found a strawberry in the pot and pan cupboard. Fortunately, it had only been there for a day or less. I'm not sure when it got there, or why, but it was there all right… and it was delicious! :)

 So there you have it.What might I possibly do to myself during these… "episodes"? I'm scared to sleep, but the more I stay up and try not to, the worse it gets. I called my neurologists office, and when I explained the situation to his assistant A, she was freaked out and said that she'd talk to the doctor immediately, when he was done with what had him busy at that time. So she sent him a note, and now I've got a referral to some place here in town to do a sleep study. They want to see if I have narcolepsy, because these symptoms are awfully similar. In a perverse way, I was glad to hear the concern in A's voice and to see how seriously she took my phone call.  Corey has been annoyed by it, sometimes even amused, but he doesn't seem to think it's that much of a big deal. I had been minimizing it as not so bad, but I knew, I knew, that it is not something to ignore. It's a scary thing, and I could get seriously hurt one of these days. A recognized this a well, and obviously my doctor did too, because the call from A informing me about the referral came only 2 or 3 days after my initial phone call. For those of you who might be professional patients, you know that this time frame is practically unheard of when dealing with the medical system! The cogs move ever so slowly, but this was rapid fire. I'm grateful. The symptoms of this sleep-problem, however, wax and wane, so I'm really anxious about the test, hoping that I'll be malfunctioning during the test so they can see exactly what's going wrong instead of sending me home with a clean bill of health, as so often happens. (On paper, I'm really quite healthy! Oh EDS, you so stealthy!)

The extra-exhausting fatigue appears to be returning, as I slept the entire afternoon and evening away, after being awake for only 2, maybe 3 hours this afternoon. I've been up since 12:30 a.m., and Corey and I took a walk together, which was so nice! Work tires him out so much that he is in no mood to walk anymore, mostly because he's been on his feet and moving around all day. I don't blame him a bit. His feet hurt when he gets home, and I totally understand that. But we walked tonight, and it was very nice. So anyway, back to the fatigue. Yes, it's here, at least for today, but I doubt that it'll confine itself to only one day. I've been tired down to my bones for a long time, and now I just feel… heavy. Maybe the cycle of fatigue and sleepwalking is starting over again, and I just gotta hope that the timing is right for that sleep study to see what they need to see.

Other than this weird medical stuff going on, I'm doing okay mentally and emotionally. I am honestly excited for the challenge of growing up and into myself while so many diseases attempt to thwart my efforts. I mean, when I was relatively "healthy" (been sickly all of my life, and now that I know about the EDS a lot of my childhood makes so much sense to me now), it was pretty easy to express myself in my outward appearance and my activities. Now both of those have been compromised, and I must find new avenues with which to not only express my true self, but to have fun in life and to help other people who are hurting very badly. I tend to think of hurting people metaphorically, but maybe I'm supposed to help the literally hurting as well. I've gotten much encouragement on that subject. We shall see. Life will unfold at its own pace, and not before. I know it sounds all trite and cliched, but it really is all about taking life one day at a time. How can I know that I'll be alive in 3 months? There is no way. And if I try to think about the future and what I can or feel that I need to accomplish, or if I think a certain way about the past, it is then that I feel hideous and lazy and basically an awful specimen of humanity. I can't let myself think like that or send those messages to my psyche. It's twisted and tormented enough from all of the abuse I endured until I was old enough to move on by myself, and I don't need to make myself hurt even more. I would never say the terrible things that I think to a loved one, or even to a random stranger on the street (though I have a few nemeses that I totally would heap the verbal abuse on! *grin* The point is, if I can't say those things to other people, where do I get off abusing and harassing myself like that?

I practiced that "in the moment" stuff today. Day two of strictly couch time (though I did do dishes last night), and the temptation to lay into myself was strong. There was so much I could be doing, I have this many things on my checklist, god I'm lazy, I'm being a wuss so I need to suck it up and go achieve something, I'm not really that sick, etc. etc. So basically I made the decision to say "fuck that noise", and I continued watching my movies and taking my nap that turned into an 8 hour sleep. The urge to hate myself for not just pushing through feeling crappy is so strong, especially because it's not some cold or flu that I can nurse for a while and then return to the world perfectly refreshed, restored, and ready to rumble. Nope-- this'll be here for the rest of my life. So why coddle myself? And yet… there are times when I do push through and get stuff done, but it's because I WANT to, not because I've guilted or hated myself into it. Hating myself into doing something will generally lead to resentment, and that's just the first step onto the merry-go-round of Hell. 

What I've discovered is that, basically… I'm a grown adult and can do what I want! Whether that's spending the day on the couch with movies and tea and my cats or doing laundry and sweeping the house before answering mail, it all comes back to doing it of my free will and not letting myself lose my boundaries or letting them be breached--breached by my own self. How weird is that?! I'll tell ya, it's hard to find the balance that you need to be happy and productive while still being "lazy" because you need to be. And trying to find that balance is exactly the sort of thing that has led to a silent blog. Well, that and fingers too stiff and painful to type. That's a sticking point for sure.

Oh, quick side note: I have a mental health evaluation for disability on the 10th of this month, so I'm kinda nervous but mostly happy. This means that they didn't just reject me out of hand! Yippee! But I've also heard horror stories about how these things go, with obviously and legitimately disabled people being turned away without receiving the help they need. Most everyone has told me to lie, embellish how sick I am, because otherwise I won't get disability. I shudder to think that the system is so far gone that this is standard advice from experienced people. When I say that I won't and don't lie, they backpedal to "Well, just exaggerate then". That… isn't as repulsive, but I still don't feel comfortable doing it. I say that if I am exactly myself and they turn me away, then I will just appeal again and again and again until they are sick of me and give me the money to get me to go away ;) (Shawshank Redemption. Who says movies don't teach you anything?) I have strong speaking skills, and I know that I can be very descriptive and good with words when trying to communicate a point, so I'm counting on that to tip the balance in my favor. I'm told that I'm quite charismatic. Here's hoping it works! The inspector is a woman, and I have this mental image of an older blonde woman in a navy skirt suit, thin, wrinkled face, no trace of humor anywhere, lips pursed, very observant (hawk gaze) and totally crisp and pointed in conversation. I imagine her to be very intimidating. I wonder if my imagination will prove true? I'll have to let you know, of course :)

I broke down crying today during my appointment with my "lady doctor". (Yeah, I could just say gynecologist, but I honestly like the phrase "lady doctor" better. It sounds more elegant, don't you think?") Well, not breaking down as in sobbing, like buckets of tears, but I did cry and she handed me the tissues and I felt a little embarrassed because I try to keep my crying to a minimum, and definitely private and not in front of my doctors. She was very understanding, though-- I love having her as a doctor. I only see her once a year, but she's awesome.

She asked what had transpired in the past year, so I gave her a quick rundown on my health, on the status of my marriage, of the stress that we are under (and that's where I started crying), etc. She was very sympathetic and encouraging, and she said that she hates the diagnosis of fibro the most for her patients because it just causes so much pain and horror in their lives. She is a total believer in fibro and how it can wreck a life, and we even had a little chat about pregnancy and fibro, the risks and challenges, etc. She really wished me well and had good wishes for me that I would find out, through the doctors and tests, what on earth is really going on so we can treat this and get it under control.

Get this: even my gynecologist, after just a brief rundown of my health changes in the last year, says straight out that I am dealing with something beyond fibromyalgia. There is another disease at play here and we haven't figured it out yet, but it is continuing to drag me down and make life feel more and more impossible. I want to find the line between reality and complaining, but I also just want to vent and explode into the atmosphere with a supersonic silent scream at how hard every day is, how much I miss my old life, and how sick I feel every day and night, how much acute agony I chronically endure. Since I got taken off of the hydroxychloroquine until my appointment with my rheumatologist in Phoenix, my joints have jumped in on the pain parade full force, even more so than before. I am not aware of a single joint in my body that doesn't ache on a near constant basis, even without use or pressure.

I hardly do hot baths anymore because putting weight on my hands to lever myself up and out of the tub is almost unbearable; walking is painful at all times because of my knees, ankles, and all the articulations in my feet. Did I mention that I received news at my last pain doc appointment that I basically have gout?! I'm a 26 year old woman. How the fuck can I have gout?! So I got this paper that lays out the foods I can and shouldn't eat, but I'd just started to revamp my diet a bit and make it healthier so I can lose weight hopefully, but the gout paper basically told me to continue eating the way that I have been! Just with more veggies. I think it's just going to be trial and error, really. This gout thing is in conjunction with my pain doc's sincere conviction that I have a type of rheumatoid arthritis that doesn't show up on the AI blood tests, but that there are definite ways of diagnosing. That's a very valid theory, especially considering my poor joints now that I'm off of the lupus/RA drug and doing so much more poorly. (My friend with the same type of RA as the doc is postulating takes hydroxychloroquine for it and it helps her. We both think that, you know, if I'm taking an RA drug and it's helping and then I get off of it and I worsen, that combined with other clear symptoms makes a pretty strong case for seronegative RA.)

By the way, a blog that I follow regularly, chroniccurve, has an entire post called Seronegativity for Dummies, and I strongly suggest you check it out if you're at all curious about what the heck I'm talking about. She's a great writer, a strong advocate, and does not spread misinformation. Best of all? She's totally my age or maybe a bit younger, a peer! I love it.

I am looking forward to my appointment the first week of December at the rheumatology department of the University of Arizona. I hope it will be a good and productive experience. Yes, I'd prefer that the doctors are pleasant and funny and good looking as well as intelligent and diligent, but honestly all of that falls on the back burner when I regard information and a correct diagnosis. What would you do for a Klondike bar? I think the question is, what would you do for a real live answer? If I just had a reason for my every increasing pain and continuing fatigue, it might make it easier to bear.

I realized this week that even though he loves me and he is totally there for me and is my #1 supporter, sees everything… Corey will never really understand what life is like for me, what it's like to be sick like this, none of that. (Random insert, but I'm really tired and falling asleep while typing this, so I closed my eyes for a very long blink and had a momentary dream/vision/hallucination of passing out and being lowered to the ground by my group of friends… the ground that was made of various kinds of ice cream. Woooooow.) So, back to Corey. See, he rarely even gets sick, and any pain he's experienced has been acute in nature, not to mention that he's good at putting mind over matter and ignoring the discomfort. Sometime I'll have to share the story of when he sprained his ankle at school in the morning, walked on it the entire day without seeing the nurse, and then walked home. Crazy dude. Crazy! But because of his lack of experience with prolonged pain and sickness, he really has no vantage point from which to really see into my experience and sort of assimilate it into his own, to pretend that he's me in a way.

Honestly, that realization was a little bit devastating to me. I knew he had my back but I had always just kind of assumed that he knew exactly what I was dealing with and was choosing to be dense at times. Oops. Heh. But no, he doesn't truly get it, and that's okay. Who does, really, unless they've lived it? I mean… I know what it's like to have my bones feel like they're filled with fire and etched with acid; I know where the articulation of my joints are because the ache is particularly sharp, thick, and overwhelming there. I know what it's like to literally be crippled by pain and not be able to take a step forward or stand at all, even sit, due to epic levels of concentrated pain in one area or another. I know what it's like to suddenly be dizzy and lose my footing on a completely flat surface. I know the jolting awake from a presumably sound sleep for no apparent reason (or because the pain followed you into your dream and it got too overwhelming), maybe just once that night, or maybe again and again and again, every hour or half hour, and I know the feeling of overwhelming gratefulness that I don't have to try to drag my invisibly battered and bruised carcass into work every day. Objects fly from my hands when a twitch attack strikes, I can't walk, and it jerks and jolts already painful muscles and tendons and joints. I need the walker to walk, especially with my very low back having decided to give up on me in excruciating spasms and weakness at totally random intervals, but my hands hurt badly from the weight on them as I push myself along with the walker and from having to grip the handles the whole time.

On the other hand, that same walker allows me independence that I would not have otherwise, and it allows me to walk a half an hour or more every night, pain or no pain. It's cleansing, this walking, and Corey joins me for that, too. It's during the walk, during the errands on his day off, that I realize he will never truly get it unless it happens to him. Good god, may it never happen to him. He hasn't the patience or the proper personality to deal with such unrelenting pain and the constant onslaught of old and new symptoms that always keep you off balance just a little. He does not have the good humor to laugh through or about a particularly painful day or hour or situation. He turns into a grouchy, mean person when subjected to large amounts of pain that are "semi-chronic" (lasting for more than a day). I've seen it first hand! So really, it's better for everyone involved that I'm the sick one, not him.

As you can see, there is much for me to think about and feel when it comes to my current "lifestyle". I didn't choose it but I do have to make the best of it because it's not going away, not anytime soon by my guess, and I'd rather not waste a huge chunk of my life just waiting to get better so I can begin being the person that I want to and doing the things that I want to do. Hell no. Corey summed it up pretty aptly when he said that there was a lot of "trauma" around the change in my life and my sicknesses, and he's right. There is a lot of trauma, stuff that I need to work through, and I really want to. I tried a particular place this week that seemed promising based on a lead from Bisbee when I was visiting the other week, but the people here were somewhat rude and quite unhelpful and it did not pan out at all. No counseling for me at this time; can't afford to add another doctor to the mix right now. Not when every penny of what I use to pay my doctors and get prescriptions and such is a gift from family or friends or somebody. God I hope I can sell these crafts that I've made somehow. It's the only way I can think to make some money right now that's within my physical capabilities. I haven't made much in the past few weeks, though. Been too… depressed. Sick. Totally unmotivated on top of feeling so feverish and flu like and drained and just blah. I'm still super shocked that I actually had a great time in Tucson and wasn't all that ill.

I blame our mattress, actually. My sister in law's mattress helped keep my pain down, I think, but ours beats me up like hell. We need either a new mattress or one of those memory foam topper thingies for it, and we also need new pillows, like, SO bad. Have for a couple of years now. Anyway, I can barely keep my eyes open, and I'm just rambling at this point in any event. Hit me up if you wanna buy us a mattress or pillows, or if you wanna buy some crafts, yeah? Keychains, beaded autumn wall hangings, necklaces, earrings, painted prescription bottles, and more. Maybe I'll do pictures some time. Maybe. If I remember… and feel like it. Heh.

Also, I was just hit with a strong but irrational desire to go to the zoo. What's that about?

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. 

So my mom is bipolar.

Yeah, that kind of threw me for a loop as well. I guess it makes sense… but the funny/weird part is that I've been questioned several times on whether I am bipolar or not as well. My psychiatrist, though, says he thinks not. I'm just very… expressive, and I have a wide range of emotions. *Whew!*

And my sister is back in the hospital, because her drug counselor felt that with all of the stressors in her life right now she might swing towards suicidal tendencies again, so he advised her to check herself in while she was still doing "okay". That makes sense, I suppose. Kind of like a preemptive strike. I'm really glad she's getting the help she needs; I hope Mom can, too.

As far as real life goes, I've been sleeping most of the past 2 days. Drogo's truck A/C went out Monday while we were running errands at the peak of the day (just how the timing worked out), and it was probably 111. The heat really got to me, it would seem, because when we came home I went to bed and didn't really get back up until today midmorning. I found out when I woke up around 11:30 last night that Drogo's truck broke on the way home from work. Fortunately, the parking lot he pulled into, which was literally the next available turn he could take, was the lot of his brother's apartment complex! Fortuitous, no? At any rate, that has me kinda panicked because I've got an emergency appt with my pain doc tomorrow, and it's going to be $120 at least. 

We are literally hand to mouth right now; I don't know how we're going to pull this off… except that the mechanic Drogo goes to is real good friends with Drogo's dad and holds the whole family in high esteem, so I think they'll do a payment plan. Just like the chiropractor I've had to see a couple of times in the past week and a half-- he was a teacher of mine while I was studying for massage therapy, so he is extending me a special circumstance payment plan dealie. I was his best student, and we've always gotten along well, plus I trust him as a doctor more than any other chiropractor in this town. Did I mention that I figured out I had subluxated my ribs along my mid back while I was in the hospital? I don't know how you can knock your ribs out while just laying there, but the bed was kinda hard… And then yesterday, while sleeping, I did something to my hip. I'm hoping it's just a pulled muscle and that I didn't subluxate that, too! Wouldn't surprise me, though, with the type of EDS that I suspect I have.

So that's me and my woes. Life is good, though. Drogo is still working, we've got food and so do the cats, and they are hilarious and the light of my life. Gramma will be taking me to the pain doctor tomorrow, and her car is fairly comfy, but the best part is that I know for certain she'll cover gas expenses! Their car is pretty new, and it's nice, so it gets good mileage. Besides, we couldn't take Drogo's truck now even if we wanted to, and it was an emergency appt so he doesn't have the time off. It'll be good to have Gramma with me. She's new to the world of chronic illness and pain, but she and Grampa have both been troopers. She has been with me during several very disappointing and unsatisfactory appointments so she knows the emotions of that, and it was while I was staying with them after the hospital that I found the intractable pain clinic that gave me so much hope and led me to this pain doc. I was legitimately crying tears of happiness, hope, and relief when I brought the information in to tell Gramma and Grampa about it, so it'll be neat for her to come along and actually see the fruits of that.

I accomplished several things this morning, and I'm tired again, so I think I'll tuck in for a bit of a nap. Fingers crossed about my appointment tomorrow! I sincerely hope we can find a combination that both controls my pain and doesn't shred my intestines all bloody.

Oh, hey, real quick-- I wore my tiara to the chiropractor's because it was a tough day, and on the way out his wife/the secretary gave me a magic wand to go with it! It's an iridescent pink fabric heart with some pink ribbon streamers on a slim, pink ribboned dowel. I intend to bling it up further, and take it with me when I go back of course. I just thought that was really cool of her. ^_^

I'm still here, still alive (barely, hah!), still kicking (feebly, and then only some days).

Things are tough here at home. There's a lot of stress. Naturally, there's the stress of my being sick; that's not gone away, especially as my condition has deteriorated further and I'm spending 23 out of 24 hours flat on my back in bed. (Oh, how I wish I were exaggerating… Well, okay. I am a little. I spend some time propped up with pillows. ;) ) We're having a rough go of it financially. Medical bills are piling up, and we keep getting hit with unexpected other things, like an astronomical water bill due to the broken pipe in our front yard (but Grampa is coming over on Friday to help fix it with the tools that we don't have, so we don't have to hire a plumber! Yippee!) and Drogo is gonna need new tires for his truck, and those blasted trips to the big city and the copays for the specialists, and having to buy me a new phone, and it just goes on and on and on… Drogo told me that we don't have enough money to go grocery shopping this week. I felt sick to my stomach. We have enough food in the house to make it to his next payday, though, and Grampa said that he's going to be bringing us food from the food bank, even without him knowing that we're so tight on funds. He and Gramma know that we're struggling. It's hard, being a young couple just starting out, even without all of this medical nonsense. RDad did us a huge favor and a good turn by giving us over a thousand dollars free and clear, out of the blue, to pay a huge laboratory bill that came our way last month. I paid that on Monday, and it was a relief.

Drogo is very grumpy, distant, and moody because of the money shortage. His entire paycheck is used up this week on the mortgage and that water bill. There's nothing left over for food or other bills at all, and he still has to pay his phone bill… that'll come out of the hundred or so dollars he has left in savings, and then he'll have maybe thirty dollars left to get us through the next two weeks. And he has to buy gas, too. Oh, he's so stressed, the poor guy… and there's nothing I can do. I am actively working on applying for disability, though. That's one thing I can do. We decided that it's something necessary for us… I'm sick enough to warrant it, and we need the help. Even a few hundred dollars a month would go such a long way…

I'm getting really sick of him being so crabby, though. I'm like, dude. I get that you're stressed. It's a big deal, this money thing. It's something worth being crabby over… for a little while. You're the provider, and we both depend on you. It's a big burden. I get it. But get over yourself. Your attitude is not helping anything, and it's making this whole "hey, let's have a good, happy marriage in spite of all the shit that we're dealing with" thing very, very difficult, so knock it off. If anyone has a reason to be crabby and grouchy, it's me, but I don't act that way because it won't help anything or make anyone happy, so you need to be an adult and suck it up. For the sake of our happiness as a couple and the atmosphere of the home, get the fuck over yourself and stop letting your stress get the better of you, okay?

He says he'll stop being grumpy when the money thing is resolved, and lordy knows when that will be. I think it's a poor decision to let your circumstances dictate your attitude. If anyone has the call to be a raving bitch, it's me. But I don't. Why should I? It would just make everyone miserable, myself included. Sure, I'm grumpy sometimes, but I do my best to be happy and look for the good stuff in life, to surround myself with love and beauty. He needs to do the same. His grumpiness is setting me on edge and making me grouchy and irritable, and I don't like it.

Aaaaaaanyways… I'm also on edge because my bestie here in town moved last week (or was it the week before?) and I hadn't realized how much I'd come to rely on him for company and also for getting around town when the need arose. Having to scavenge for rides is difficult when half the people I know don't have cars and others are out of town for an extended amount of time and most of the people in town I don't know well enough to ask for rides and the rest that I do all have jobs with difficult schedules. I don't drive now, at all. And I don't leave the house without my walker, ever. If I'm not improved within 6 months, I'm gonna start saving up for a pretty, new walker that's more streamlined and much lighter.

This thing is sturdy, to be sure, but it's heavy and bulky. I got what I could on short notice and it's served my needs admirably, but I honestly never dreamed when I purchased it off Craigslist that I would need it this much or for this long. I thought it was just to aid me in travel through the long trek through several airports on the way back East for Christmas. Now I've had it a year and a half and it's an invaluable tool.

Oh, I'm also blogging now over at a different blog I just started. It's different than this blog, not as personal. More for my writing writing, if that makes sense. I need to actually draw up a schedule of topics and write an "about me", but I'm working on it. Slowly but surely. It excites me to be "out there" as a writer, even in a small little corner of the world. I do love to write, and I've received a lot of encouragement. I'll still be here, when I have the energy and the thoughts and feels I need to sort through, but I'll be there, too. Honeybee Chickadee is the name. I'll see you there?

Oh, and by the way, just wanna throw a HUGE congratulatory shout out to Beate and Keith on their engagement! I'm so happy for you two-- you are clearly a good match, and very happy together. I'm very much looking forward to wedding pictures, but more than that I am looking forward to seeing the adventure of the life you two will lead together. It's going to be stunning, I am certain, and so full of, well, life. Keith, that's a heck of a vacation my friend. I've never gone on vacation and come back engaged to a beautiful woman! Then again, I've never gone to Germany, so… maybe that's my problem. ;) Again, congratulations. Much happiness to you both.

Voices, impressions, strident and discordant jumbles shouting in whispered tones to be heard.

Stay awake. Read your book. Write something. Make something. Think on things. Try to puzzle out your feelings.

Oh, feelings. So many of them. I find myself swamped and mired in an inexplicable sadness, a sucking, gasping need to be drowned in affirmation and attention and unsolicited care. I have been harrying C for answers, for love, for affection, for a discussion of feelings and thoughts and other things unpleasant to the male species. I can't explain it any more than I can stop it. I find myself helpless to stem the tide of need and utter uncertainty that wells within me and gushes into the void around me.

Fear. It nibbles and gnaws, creeping into the smallest crevice and dribbling into my thoughts like a sweetly scented sewage, enticing and poisonous. I'm afraid of so much… and there is so much that I cannot even put to coherent thought. It just… lurks. Roils. Turns my insides to mush and makes a jumble of all that I know to be true.

I know his love. I am certain of it. But I am swept away on the current of my own anxiety and broken expectations and grief and disappointment and so many other things that come with the breaking of a young, promising life… my hand is outstretched, reaching for shore and safety and the hands of those who care for me, but they are just out of reach. Untouchable. Straining. Grasping. My fingertips slide past, centimeters from salvation, and I am lost in myself and my brokenness.

Someone save me, please. I'm going down amidst the wreckage of who I once was, and I'm running out of air. I knew how to swim, once; the knowledge has been stripped from me as surely as anything else. I'm drowning. I'm drowning, and even my cries for help feel fumbled.

One thought stands out amid the rest.

Go to bed. Snuggle up against your husband and close your eyes. You can try again tomorrow.

So today we plan to go visit the local ren faire. I'm inordinately excited, as I always am when it comes to renaissance-themed events. I plan to wear my green dress (the one I initially bought to get married in), and, joy of joys, I can get away wearing it without supportive undergarments! Freeeeeedom.

My friend K devised an ingenious sling of nylon webbing, carabiners, and something that looks like a wire baking rack. It loops over the handlebars of my walker so that I can rest my feet up off the ground and be pushed on the Chariot. It's a foregone conclusion that I am not up to walking around a dusty fairground for hours. I woke up with pretty severe back pain, especially low back pain, so even getting to the kitchen from the couch is a bit of a challenge for me today. I saved pain killers especially for today, though. I will not miss out on more things, just because I'm sick! I'm already having to miss K's wedding, although that's really more of a financial thing than anything else… I missed being able to spend a week with J and had to content myself with just a few hours. I had to give up my job completely this past week (which my heart is still crying about)… no. I draw the line at ren faires. As long as I have someone willing to push me, I will force myself to stay upright and conscious long enough to at least make a pass through. I do have to make a point to take pictures of the ingeniously designed sling, though. Many people have asked for them.

Despite the high pain levels, I am feeling a bit cheery today, probably because I'm expectant about my adventure. I need to shower, but I'm feeling so buoyant that I may decide to do my makeup as well! I've compiled some really neat eyeshadow tutorials on Pinterest, and I've been dying to try one of them out. So far, though, I've not had the energy or the occasion. Seeing as how C recently laid himself down to sleep and won't be up again until 1 pm, I've got hours, so I can take my time and just do a little bit at a time. Once the sun comes up, I will bring my makeup out into the living room and set myself up a little makeup studio. Maybe I'll put on one of my favorite animated movies while I do that. I'd like to re-do my toenails, too, but that is not going to happen today. Too much back and ribcage pain for me to be bent at the waist for more than a few seconds. Besides, sparkly nail polish doesn't ever look abominable, even when it's chipped. Plus I'll be wearing boots.

Oh! Oh! My friend L, who moved to the East coast, is in town this week! She showed up the other night and surprised me :) It was really nice. I was feeling pretty awful (that was after I'd been throwing up, but was recovering), but she already knew the status of my health so there was no pressure. We hung out on the couch together, watched Pirates of the Caribbean, and chatted up a storm. Heyyyy… maybe she'll come back over and do my toenails for me? I'll be seeing her at the faire today, as well.

So far my tactic of drugging myself senseless with sleep aides and Benadryl has worked. I've slept a lot, and it has helped me to stretch out my remaining pain pills further than I ever anticipated. I'm really proud of myself for making it this far. It's been miserable, to be sure, but I'm still here, and I made it work. Now, to just make it to Monday morning… God, I hope they give me a script. I've been keeping track of my pain, (the new blog, remember?), I keep track of when I take my pills, and I've got the timeline of my symptoms and pain, so it's pretty clear that I'm legit. Not to mention the fact that M will be with me and I won't be alone, so I have someone who's seen my sickness firsthand and has taken care of me. She can add valuable perspective, and help me to advocate for myself. I couldn't find anyone else to take me up there on Monday, though I asked around, so she will be skipping out early on the last bits of the ren faire (she's staff there) and driving me up at butt-thirty in the morning. We'll be leaving by 3:30, I believe the plan is.

Have I mentioned that I'm terrified? I'm so scared that they will refuse to help me… or worse yet, want to help me but be unable to. I'm scared that I'll be labeled as a drug-seeker, as a faker, that I won't be taken seriously, and that I will be condemned to try to live with this pain as best I'm able. This is, essentially, my last hope at this point. These are the people who can help make my life livable and bearable. Whether or not I am able to control my pain dictates whether or not I'll be able to participate in life again, to hold down a job, to drive myself places, to have fun adventures, to have sex with my husband, to keep my home in order, to exercise and help my body to be as healthy as it can… It all kind of hinges on what goes down this Monday. And that, my friends, is terrifying.

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.

There are some days when it's hard to be totally cheerful. I mean, there are some days where I'm just a little melancholy. It could be any number of things; perhaps I'm not feeling particularly well one day, or maybe I heard/read/saw something that triggered a sense of loss, or maybe it's that the moon is in the house of Mercury in retrograde or whatever. The fact remains that sometimes that melancholy is just… there. Today is kinda one of those days.

I've not been feeling really well since I had those three days of hell without my pain meds. Did I mention how god-awful sick I was? I really don't think you can comprehend it unless you've experienced it. I couldn't, and I feel uber sick all the time. It was that bad. Like, I never want to experience that again upon pain of death bad. The only thing that kept me going was having a "deadline" to look forward to as to when I could refill my meds. If I had to do that indefinitely… nope. Just nope. I'm not even going there in my thoughts.

Anyway, December was a hard month for me. There was the travel, cold, and stress that came with visiting my family. That was already difficult for me, and then there were two trips to the big city for doctor stuff which was also hard on me. Then at the end of the month came my three days of hell, preceded by a sinus infection which I still haven't managed to fully kill. (Here's hoping the antibiotics work!) It was just rough, physically, and I'm not recuperated yet. I'm exhausted and most of the time I don't know "why". Is there a reason, or is this just my new level of normal? It's hard to tell.

Okay, so I'm feeling crappy and tired and I've got this sinus headache that won't go away and I'm nauseous all the time and my stomach hurts badly whenever I eat something ever since the three days and I'm not really digesting things right right now, and I'm more achy and tender than usual, and… I just generally feel run down. Imagine that you've had a really bad case of influenza and a stomach virus for the past year and a half straight, with periods of getting other sicknesses on top of that. Congrats. You're in my life.

Sorry. I'm sorry. I don't mean to be a downer. I just see everyone around me with their resolutions for the new year, and they're exercising and eating food and getting healthy, and I'm… getting worse. Still. Guys, it kinda makes me want to cry.

I know my life is amazing. I know it. My husband is the most awesome of awesome things to ever be awesome, truly. I have fantastic friends. I have good health care. I have a family that loves and supports me, even if they don't all understand what I'm going through. Our bills are paid. We have the disposable income to be able to go to the movies once in a while, which we did yesterday. We have the money to support pets, and I love my kitties. Life is good, y'all. It's just hard to enjoy it sometimes when you feel so crappy and you're so uncertain about yourself and the future. I know my future with my husband is steady. (Did I mention that we're almost to our first wedding anniversary? I'm so stoked.) But my future with myself is still so up in the air and I hate that. I want to know, dammit! What is wrong with my body? What is the malfunction, and what can we do to correct it? I just want to know!

Did I mention that I had to step back from the HJ? I asked for a year's leave of absence to get better. I believe it. I feel it. This is my year. It's gotta be. I can't afford to get any sicker. What will I have left? I will still be running the teen girl's support group. That much I can and want to do. But the HJ, helping people, that's my heart and soul, man. To have to give that up is killing me. The HJ is exploding. We're getting big, we're getting funded, we're getting really professional and helping a ton of people. Positions are opening up that I am perfect for, and I want to jump in there and do it so much… but I have to sit on the sidelines and watch E scramble to find people that are half as reliable and trustworthy as I am. I have to watch her get let down time and time again because people are flakes, and I can't step in to pick up the slack. I am so helpless. I hate it. I absolutely hate it. It eats at me.

It's like I finally found my passion and my purpose in life, and now I'm forbidden to live it out. It's like being a dancer and succumbing to a slow paralysis. I just… I grieve for my losses, as surely as I grieve the loss of a loved one. Who died, you ask? The Cassandra that was, the Cassandra that could be and could have been… she's slowly but surely faded away into nothing but a faded memory, the echo of half-remembered song lyrics and the wisp of a scent long passed.

I watched What To Expect When You're Expecting again today. It's a cute movie, and I like it. However, it brings things up for me, as so many things do these days. I took a pregnancy test at the doctor's the other day so I could get a renewed prescription for birth control, and the nurse that took my urine sample asked me if I had kids and if I wanted kids in the future. I just smiled and said yes, but my heart started crying because not only did I have babies and I lost them, I don't know if I'll ever be able to create a family in that way and it kills me. I want to be a mom. Oh, I want to be a mom. (This coming from the girl who swore she'd never marry and have a family! But that was just protection to keep myself from getting hurt again.) First of all, I am unsure if I can even carry a child to term even if I were healthy. Secondly, there is no way that I could see a pregnancy through to the end at this point, or even care for the child afterward. As bad as I am right now while on meds, I would have to stop taking all of my medicines while pregnant for fear of damaging the fetus. That's not a viable option at this point. C and I have actually discussed this situation and what we would do if the birth control fails and I find myself pregnant. Both of us agree that we really would have no option but to terminate the pregnancy. Even thinking about that just destroys me, because I want to be a mom… Voluntarily giving up the life growing within me seems so counterintuitive. But it is what I would have to do. I hope and pray that I do not get pregnant until we resolve my health issues. I seriously, seriously do. Fortunately or unfortunately as the case may be, the women of my family are super fertile. (Did you know that I am the result of a drunken one night stand in a meadow? Parties, liquor, and ex-boyfriends just don't make a good mixture apparently. But hey, I'm not complaining. I'm rather glad to be here, actually!)

So, here I am. A happy little mix of weird feelings and positivity and optimism and fatalism and bleak uncertainty and maybe a few bad jokes just for good measure.

Oh, guess what? The last doc to prescribe my pain meds changed the frequency, so now I can take one every four hours instead of making myself wait six hours. It's actually quite an improvement, and although the meds aren't as effective as I'd like them to be (I'm never not in some level of pain, but it's the difference between bearable and unbearable.), it's making a big difference in the level and duration of the spikes of really intense pain. I'm quite happy about that! I still don't like that I'm so reliant upon opiate pain killers for even basic functioning, but I'll shoot a rubber band in the eye of anyone who suggests that I can go without them. The three days proved the folly of that hypothesis quite clearly. I can't wait until I no longer have to slowly destroy my organs to maintain my sanity. This is my year, guys. It's coming. I'm gonna get better. Just you wait and see! Until then… naps. Lots and lots of naps.

(Oh, quick funny story! At M's bday party last night a girl that I'd just met or maybe had met in the past said to me in passing, "You're looking really healthy these days!" I smiled and thanked her politely, of course, but inside I was both incredulous and laughing bitterly and hysterically. It's funny how well I do look, though, to be honest. I mean, I've gained weight but I'm still quite attractive, and there's really no outward indication of my health struggles except for the walker that I use when I'm out and about. I am both grateful and resentful of that. Hard to explain. But I've learned to simply accept the compliments with good graces. No one likes to have their compliments rebutted, no matter the reason.)

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!

This is "David" the plant, and the lily that bloomed today.

I've been anxiously awaiting the blooming of this particular flower. I sincerely hoped that it would open before I took off to go see the fam, and I was rewarded today for my patience and hope. I texted all of the S's to tell them about it, and then I went to D's fb page and left him this message:

"I have a plant named "David". Actually, it's a collection of plants, all in one basket. It was at your memorial service, and the ladies didn't have room to take it back to Id with them. Actually, I wanted it anyway, since I didn't have anything to connect me with you, really. K got your guitar, J got your Bible and I got...? I know I'm not your real daughter, but I still wanted something of yours to hold and remember you by.

Well, the plant is flourishing. I feel like it's fitting, since you were such a plant guy, that my connection to you should be plants. It's doing so well, in fact, that it sent up a flower, a pure white lily. I've been anxiously waiting for it to open, hoping that it would happen before I left for the month. After all, I never did get to see my tulips bloom, either. Not once. But the memory of talking over the pros and cons of the various kinds with you and your obvious pride in my selections is enough for me.

It opened today. I think you'd be proud of me. Your girls and C all agree that you would, and that's enough to bring me to tears. I want you to be proud of me. I miss you. I miss you so much! I am always crying when I come on here to write to you! It's funny. But not. Because I miss you... so much. I'm glad I got to see your lily open."

The kitties love being outdoors. That's Juneaux by the table and Coraline in the "grass". (Weeds. They're weeds.) When I wake up I open the back door for them, and they come and go throughout the morning. When C wakes up I shut the door and open our bedroom window. Since it doesn't have a screen, it's become the "cat door". C has plans to get a screen for it and then cut a hole in the back door somehow and install a real cat door so they can come and go as they please. He wants to get them to the point where they go to the bathroom outside and we no longer have to have a litterbox. We'll see about that one. The ground is too hard for them to want to do their business out there, I think. Hard packed. Not diggable.

I'm slowly but surely preparing for my big trip back east. I got my packing list all spec'd out, and I wrapped/prepared for packing all of my Christmas presents last night. I also finished the sorting of the HJ's massive stash of handouts, and I will put together a binder of pertinent handouts for J to have. Hopefully it helps her. She seems to be looking forward to taking care of me while I'm there: painting my toenails for me, making me tea in the morning, cooking for me... It is going to be strange, allowing myself to be taken care of. I am so used to being the caretaker and peacekeeper for my family. I've been the second mama most of my life. And now... now I'm basically helpless. All I can do is offer emotional support and what wisdom and lessons I've gleaned through the years. Then again... everything works out alright. Maybe this is exactly what they need right now, when they're all so broken... Maybe they need someone to take care of and nurture who will love them for it, to heal the sadness within themselves. That's what Juneaux did for me while I was facing down my demons. Maybe this is just right. We shall see.

I have been much more stable emotionally these past few days. I think C was right, and that the accidental withdrawal from my antidepressants was affecting me more than I realized. It does help tremendously to stabilize me. I have also identified the trigger for this round of suicidal ideations, and that is the anxiety of running out of pain killers. I have to consciously stop myself from worrying about what will happen when I run out and thinking about trying to survive without them; I cannot think about how sick I will become and how overwhelming the pain will be. It's too much. I have worked out a few possible options to make sure that doesn't happen (all legal, thankyouverymuch), and now I will let the matter rest. I will deal with it if it comes up, but then and ONLY then.

So now I will finish my chick flick while putting together J's binder and drinking delicious tea from my bestie J. I think we've finally worked out my being able to see her after all! Suh-weet! Her family is so wonderful and understanding. I got this message from her yesterday:
"My dad's response to learning about the situation with your appointment - "Ah Birdie, we completely understand and would want her to do this at any cost.
Work something out with the airline, but if not, well, we support the industry; may it 'live forever'.""

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.

No words. Just music.

K. I lied about the words. I'm full of them.

I hurt physically. I'm swirling inside with the maelstrom of things that must be accomplished, things that are happening, and so many feelings... It's as though there's so much that a grey fog has descended upon it all, obscuring it with a thick cloud of apathy.

The to do list fights to make it through the thick brick wall of uncaring, unfeeling nothingness...

I am laying (lying?) on my bed, listening to the full We Are Not Alone album. It's comforting, somehow, these songs that I know so well... songs that lulled me through so many days and nights of depression as a teenager... songs that lull me through this funk even now. Dare I call it depression? Maybe. Maybe I'm just overwhelmed.

Whatever it is... I don't feel good. I'm hurting and want to take a pain killer, but I'm afraid that I don't hurt enough to justify taking one, and that it's just 'cause I feel out of sorts and want to feel better. I don't want to be a junkie. But I don't want to hurt, either. I fight this battle with myself every time I come due for a pain killer. It's dumb... but it's constant warfare in my mind over whether I hurt enough, whether I'm sick enough, or whether I could just tough it out for a while longer.

Of course I can tough it out. I proved that last week. That doesn't mean that I ought to, or that I have to.

But still... when is enough enough?

This is a topic that's been on my mind off and on for, well, a really long time... as long as I've been actively fighting chronic illnesses, that is. So... years? Don't think that my battle began with fibromyalgia, far from it!

I've always been "sickly" in some ways. Asthma as a kid and teenager, low energy levels and high need for sleep with a very difficult time getting up, leg pains throughout life... I just assumed all this was normal, and that I kind of sucked at life for not being able to soldier through as everyone else must be doing. I looked at the sporty kids in my high school, the ones that could run the mile without difficulty, and I wondered how they did it. I didn't know that there was something wrong with me, that you're not supposed to feel that way. I remember helping to plant a tree during Bible college, and just ten or fifteen minutes of the exertion of digging left me feeling cold, lightheaded, nauseous, weak, and trembling... yet I kept digging, because my partner was still digging. If they could continue, I could continue. I assumed that they were feeling the same way, but they were tougher than I was. Wrong. I didn't know that exertion isn't supposed to leave you feeling that way!

During Bible college is when I really began getting sick, and the gastrointestinal issues came to the forefront. I powered through as best I could, knowing that I was very sick in some ways, yet not knowing that I was abnormal in others, and a few months after graduation I finally found out that I was allergic to a bunch of different foods and that I had bad hypothyroidism. The next few years were a constant battle with my energy levels, my guts, and also my mind. I started working through my past abuse, all the different flavors of it, and I noticed that as I healed emotionally I also began to heal physically. But I was still sick.

I had reached a place of reasonable stability when the fibro reared its hideous head and began to drag me below the surface of functionality. I'd somehow always managed to stay afloat before, usually motivated by a fear of rejection and sheer stubbornness combined with economic necessity, but now I was sinking, and fast. Since last fall, I've found myself in a place where I require naps on a regular basis, I have a walking aid with me at all times when I leave the house, I regularly rely on painkillers to make it through a day (judge me as you will), and I still struggle with eating and digesting food in adequate amounts. And yes, I even have a handicap parking tag hanging from my rearview mirror. (Which is the bomb, by the way!)

This isn't to say that all is doom and gloom. I do see myself getting better in increments, and I think the Long, Dark Slide Into Oblivion is finally over. Now that I've recovered from the wedding stress, I feel like I'm taking incremental steps back up that figurative stairway that I had been so rapidly descending, and that encourages me! Mom told me today that for a while she began to think that she might have to move out here and just take care of me until I eventually died, that's how bleak the outlook was. (To be fair, she was also worried that I had cancer and they just hadn't caught it or something.) I assured her that I've stabilized (for now), and that I feel as though I'm improving some. I think that helped to put her at ease a bit.

The possibility of returning to my "old" self, or even better, brings me to a painful realization, though, one that I am actually quite loathe to face. It sounds kind of silly to admit even silently, much less to put into words on a page, but... I'm scared of getting better. No, really. I am.

Honestly, I've gotten used to being sick. This has become my reality, my daily battle. When it's "gone", when I'm better, what do I fight against then? What do I aspire to? Life is so simple when it is distilled down to "get better". That's what you focus on. That's the dream, the goal. It's the gatekeeper of other dreams.

I want to travel to different countries and experience different cultures.
I want to try sky-diving.
I want to have a baby and raise it.
I want to have a fulfilling job that I enjoy.

But those things (except for the job, maybe) are not things I can do right now. They would destroy me, and possibly those around me, were I to attempt them now. First things first, I must "get better".

I know it sounds like I've let the sicknesses become my identity. Like I'm saying, "Without them, what am I?" Maybe it's true. Maybe I have. I'd like to think that's not true, but I do know that as long as I'm sick, people consider me to be a fighter. People have this certain idea of me as a person, but when I'm not sick anymore... who am I? I am me, but I've lost a part of what made me "me" for a while. Sure, I can say that the fight doesn't define me, but... doesn't it? Not wholly, no, because I am so much more than a fibro fighter, or a UCTD fighter, or a hypothyroid fighter, or a depression fighter. I am Cassandra. But those different "fighters" are also a part of me, and when I'm not sick anymore, like not really sick, it's like those fighters go away, they step back into the shadows. They've been the visible forefront for so long, because this daily fight is so visceral, so intense, that the other aspects of myself can only come out solo in spurts and glimpses, or share the limelight with the fighters at best. When the fighters recede into the shadows... the stage feels very, very empty.

At least, that's how I perceive it to be. I do have visions of freedom, glorious freedom, you know-- to just do whatever the heck I want for a change?! But maybe it's like Stockholm Syndrome... you get used to your imprisonment, and you even get kind of fond of it. Humans love familiarity, even if it is a terrible familiarity. You get comfortable, and change is frightening. Even good change.

Also, when I am not sick anymore, I am then way more responsible for... everything. Cue my intense fear of failure and my unrealistic expectations. As of now, I can assuage my guilt with, "I'm too sick to accomplish _______, so it's okay." Sure, but what about when I'm not sick? Then it's just my own damn fault.

And maybe part of it is my fear of living in abundance. I come from a place of "I'm doing pretty good considering _______." I've never approached life from a place of, "I'm doing pretty good." There has always been a qualifier. Sickness is my qualifier as of right now. When that is gone, then I must face my life as it is, and the prospect of that is... scary.

That's what it boils down to. I'm scared, scared to lose my familiar cocoon of pain and symptoms and walking sticks... scared to step into the sunlight because that's not what I'm used to. Scared that "better" will let me down. Scared to be disappointed, or worse-- to disappoint.

But as I was thinking about it the other night, I realized that I'll never be 100% "better", not really. At least, not in this current place and time. They don't have cures for what I have. It's all management, really. I am beginning to view it as I view my food allergies-- if I ignore my limits and eat whatever I want, I damage myself and I hurt. I pay a price. Sometimes I pay a price for something that I don't even know the cause of! I can be as good as can be, and sometimes I still just hurt or get sick, and that's a fact of my life. (Momma C always knew when I was stressed even before I did, because I'd start having gut problems and get sick. She's the one that made that connection, not me.) I have chronic illnesses. Chronic means that they're going to be around a long time. I can choose to be good about it and manage them as well as I can, or I can be an inconsiderate dick to my body and pay the price. Even if I am as good as can be, sometimes things beyond my control will cause flares-- weather, environmental stressors, other illnesses like colds or flus, etc. Like my allergies, I can get to a place of stability, where I'm not constantly miserable... but I will spend the rest of my life being constantly aware. The fighters will be lurking in the shadows, keeping tabs on things and patrolling the perimeters. Sometimes they'll have to come back into the forefront, but the goal is to get to the place where they offer background support to the other aspects of myself that will emerge into the light, one by one.

Sure, I'm scared of what it will mean when I'm "not sick anymore", but I think it's worth at least trying. I was scared of the changes I needed to go through emotionally to heal from my past, but I would never trade this health for that dysfunction! Facing the fear and walking through it were valuable experiences... and this is just another aspect of that.

Besides, if I hate it, I know what I have to do to get sick again, right? ;)

(Please know that I'm being facetious! I refuse to play the system for my own gain. Stuff like that ruins the legitimate claims for help that people with chronic illnesses need.)

Also, Dave Walker over at From the Fog did a great post on this very topic the other day, which encouraged and inspired me to actually get this out of my brain and onto "paper". Thanks, Dave, for that kick. I needed to process through this.