What do you do, when everything comes crashing down around your ears? I don't mean literally, of course, although I had my doubts while Corey was up in the "attic" crawlspace to install the ceiling fan we bought for our bedroom (go tax returns, yeah!) and trying not to fall through the ceiling.

I dunno. Sometimes it all just kinda hits me, you know what I mean?

What do you do when you hate every second of your disease, but it's so imprisoning that you can never forget that you have it for any of those hated seconds? I'm talking Ehler's-Danlos here, although Addison's has been giving me a run for my money lately too, trying to manage my adrenal glands manually. Always a tough challenge for me, even more so lately.

So do you just hate your life, then, because the two are so inseparable? Usually I try to wrap my world in beauty, to find it, create it, whatever I have to do. Sometimes, though, the cold stones that weigh in the pit of my stomach overcome me and all I can see, all I can feel, is the destruction of the life that I had, the life that we planned, the future of my personal dreams and our mutual hopes. And it's hard, really hard, to not hate your life when every moment is agony and you know that there's no cure, there's no hope, there's no remission, and it keeps getting worse. I try not to think about what it'll be like in a year, 3 years, 25 years, but when I'm huddled on the bed and sobbing into my husband's pillow while trying not to move because it hurts, I think about those things. I think about them, and I am afraid.

I don't want to do this. The weight of the agony that waits for me is too heavy a load for me to bear. It's scary, but more than that I hate hate hate HATE what this agony has done to me personally, to my husband, and to our relationship. I hate what it's going to do. I appreciate, in a circumspect way, how it's going to make us better people and probably already has--as is the nature of suffering--but that thought remains rather subdued.

When he came to bed tonight and I lay next to him, trying to relax and mayyyyyybe get some sleep (no sleep to be had this night, alas), I eventually spoke up. (Choked with tears, of course.)

"I'm sorry for being so sick. I hate every second of it. I think I hate it more than you do. I hate what it's done to our life."

He didn't respond.

Not a word.

In my time of desperate emotional need, he stayed completely and 100% silent…

…except for the soft and sudden rustle of bedsheets as his foot sought out my two feet, entwining them beneath his leg and covering them with his own as he rubbed his instep against the top of my foot a few times.

All I could do was blink away the tears, sigh softly, and let this renewed sense of peace settle deep into the center of me where I will lock it away tightly and hold on to the hope that it's going to be okay… somehow. Three feet of peace--my two feet and his comforting one-- to remind me so.

"I love you."

"I love you too, lady."

I got my hands on an off-brand of Nutella that I can actually eat (can we please stop with the gratuitous soy usage, corporate America?), and I understand everything now. I mean everything. The meaning of life, the universe and everything. Turns out it isn't forty two, it's chocolate and hazelnuts. In spreadable form. The gods have descended and Eden is here. It's like the Ferrero Rocher chocolate candies that I've loved so much for so long but can't have anymore (thanks again to the soy problem) have exploded all over this whole grain toasted pita…slice? (what do you call a single piece of pita bread in all its pockety glory?). Of course, the whole wheat makes it healthy. Right? Right. Also, as a completely pointless side note, I must say that not indulging in the Oxford comma for the phrase, "life, the universe and everything" is killing me, but I am pretty sure that's how it's written and I want to be faithful to the original text. Douglas Adams deserves it. (For those completely lost, I'm referencing "The Hitchhiker's Guide to the Galaxy" series by Douglas Adams. It's a series of books that is completely silly, mind bending, and entirely sensible if you read them all through.)

Chewing this deluxe chocolatey treat is killer, though, thanks to the good ol' oral surgery recovery. The gaping sockets where my 3 wisdom teeth used to be are pretty much alright, in that there's no easily discernible spikes of pain above what I normally experience, but the bottom left jaw pain has got to be the incarnation of everything evil in the world. Due to the positioning of that tooth, the extraction involved cutting open the gum and sewing it shut again afterward, and this stitched area is causing me debilitating pain. Yes, even with the copious amounts of strong pain killers that I am taking, and yes, even with all of the little countermeasures you can take against pain in addition to the pain meds, it's keeping me from sleeping at night, keeping me from eating solid food, giving me migraines, making the hours pass soooo slooooooowlyyyyy, and making my supply of pain killers look suspiciously puny. Once or twice a day I give in and eat something that requires chewing, but ouch.

I finally caved yesterday and started applying ice directly to my jaw, and that was an amazing breakthrough... at first… for a bit. Now it doesn't seem to matter. Sorbet has been a helpful friend as well, kind of numbing things out with cold from the inside, plus it's super delicious! The weather, though, has been affecting the pain levels. Clouds have been coming and going and bringing rain, so on the days that the weather is changing my pain is skyrocketing. On the calm days with no clouds and no changing, I was able to get it mostly under control. Since I cannot control the weather, I will simply do what I can to get this healing up as fast as possible. It's nice to know that this intense pain will end at some point. I'm not used to thinking that way anymore.

So. Birthday coming up in a week, give or take a day. I'm going to be the ripe old age of 27. I think it's fair to say that I'm definitely not where I thought I'd be in life at the moment, and things are going to be different than I had planned, but I think I'm coming to grips with that. I feel like I'm coming to after some time in a thick, numbing sleep, coming back to myself and gulping a huge lungful of air. I've had several "off" months and lots, lots, lots of heavy blows in a row. That's had me staggering, trying to come to terms with reality; adapt, adjust, and survive. I have not lost myself, though, and I feel that irrepressible sense of self rising yet again, despite the surroundings and trappings that modify the expression.

While I was on a walk the other day I caught sight of the desert mountains in the distance, and the dark-light pattern of the clouds and sunlight passing over them in turns gripped my heart as it always does. I felt the familiar yearning for a good, solid hike, followed by a mournful thought that hiking is out of the question when I'm scraping along the road with my walker. The second thought I had was, "Fuck that noise!" I refuse to let myself be bleached barren and bled dry by my disease(s). When I go hiking or backpacking I definitely won't be able to travel as far or as fast, but that doesn't mean that I have to give it up entirely. Yes, there's something to be said for working within the parameters of reality, but there's something more to be said for not giving up on yourself and refusing to become a bland mush of a person when faced with limiting circumstances. So no, I won't be a massage therapist like I had dreamed and planned, because that's just not realistic when you consider my connective tissue disease and my fatigue and pain levels. It's not a matter of want, it's a matter of not physically capable, no matter how hard I push myself and aim for the dramatically inspiring documentary story of a life.

But I still massage my husband, my friends, when I can. When I can. I've adapted. I've altered. But I'm not giving up, not unless I want to, and for my own reasons. Because while I refuse to be conquered and give up on my hobbies and my interests because of circumstances imposed on me against my will, I also refuse to be stuck doing stuff that I no longer really want to do or that I didn't want in the first place, simply to prove that my illness "doesn't define me" or whatever. If I were doing stuff just to prove that my diseases don't have me by the balls, in that moment I'd be proving myself wrong. It's a tricky thought, and a tricky balance, and it's taken me some time to get to this place. At first I needed to simply withdraw and lick the wounds inflicted upon diagnosis, to simply ride the tide of one appointment after another, and I'm okay with that. There will be times when I do so again, and that's fine. So long as the reasons are mine, and I'm doing it for me (and not because I've been bullied into it by people or my diseases), I can do whatever I need to do to get by. For me, for now, it means letting myself emerge once more, a slightly different incarnation with all the spunk and sass of my former self combined with a new balance and perspective tempered by pain and trials.

Hey, did I mention that I got glasses? Yep, I sure did, and they make me look hot. I'll get a picture in here sometime when I can, but for now just take my word for it. Here's how great they are: I actually feel more attractive with them on than without! Yeah, I know. That's never been a thing for me before. In fact, I feel very good about my appearance in general lately. Sure, I'm still overweight and trying to slim down, but my hair has been growing out and is now a chin-length bob in my natural color, my skin is clear, I've got really cute glasses, I finally found a type of bra I can wear comfortably, thus my breasts and cleavage look fantastic (even if they *are* sports bras), and I've got some really cute earrings. I want to get more holes in my ears and I've been playing with the idea of a nose ring, a very thin and delicate hoop (see below), but I just don't think it would look that great.

I've always wanted an eyebrow piercing, however, so maybe I'll go for one of those...

I definitely want what the ponytail lady (that's Fergie, right?) has in the way of earrings-- a whole ear-full, all the way down. (I just hope my babies don't decide to reach for the shiny things, you know? Yikes!)

Of course, I want a tattoo in the worst way but since I struggle with hyperalgesia and always will, I figure that it's probably out of the question. Unless I were to use medical grade anesthesia or something for the procedure. Hmm… (Kidding.) My first tattoo, though, would be this:

To wrap things up, and on a completely unrelated side note, I love my kitties. We took Fancy, the new cat, to the vet today to check out her ears--either mites or an infection, either way real bad when we got her but improving while with us--and she behaved so well both on the car ride and during the appointment itself, even while they made use of the rectal thermometer. I know that I wouldn't be as quiet and docile as she was if a rectal thermometer was involved in my exam! Turns out that there are no mites, at least not right now. It could have started out as mites and then progressed as they left their waste behind, but she has a fungal infection that a course of ear drop medication should clear right up, and I expect that we'll see a bit of a change in her disposition once that's better. She's already sweet now, but there's a difference between being nice and sweet while you're in discomfort or pain and being sweet and nice because you're no longer in discomfort or pain. You know what I mean? Well, right now she's kind of a bitch to Bob and Juneaux (pronounced "juno", by the way), hissing and swiping when they come near or if they (try to) pass by, growling at them if she so much as sees them, but it's just driven Bob and Juneaux closer which is what I was hoping for. They're becoming bros, which didn't happen before because Bob actually had his bro, Cortes! So we'll see what happens as the kitty soap opera continues. Tune in next time for more drama on As the World Tunas/General Pawspital/All My Kitties/As the Fur/Litterbox Turns.

By the by… Which is your favorite kitty soap opera name? Got an original one? Let me know in the comments!

So it's been a while! After a while, news builds up and becomes all the newsier, meaning that I'm really doing everyone a favor by waiting a long time in between posts to make sure that I actually have something to talk about. The problem is that life just keeps happening, no matter whether I'm writing or not, and as it all builds up and builds up the thought of writing about it becomes more and more exhausting until I've totally talked myself out of it! Or sometimes I'll talk myself into it, but forget the most important parts lol.

So what's been going on with me? Well, I saw the head doctors, both of 'em (neurologist and psychiatrist) and I'm trying out two new meds. The one from the head shrinker is a mood stabilizer for Mood Disorder Not Otherwise Specified (because I'm too complex to just label with bipolar or manic-depression, of course!) and it has the potential to make me quite depressed. I've been feeling that for sure lately, though not entirely certain it's med related. I was having problems with depression at least a week before I saw the psych, and it only got worse for a while there but it feels like it's easing up some. Now I'm struggling with sleep problems. This could be related to an interplay between the new psych med and the mild sedative from the neurologist to keep me from twitching, but for a few days at a stretch now and then, and for past several days right now, it seems that I can't stay asleep but I can't stay awake either. The result is a groggy, drowsy, constantly nodding off lady who wakes up to find herself doing random things or finishing sentences that make no sense at all and have no bearing on what's happening around her. I'll have a thought process going on that is much like the thought processes you have in dreams, so very disjointed and unrelated to reality, but I'll come back and "wake up" halfway through or right at the end and say the last part out loud… but realize as I'm saying it that it's thoroughly nonsensical. I was talking to Bob Cat earlier today before hopping in an Epsom bath for my legs and was saying something about how it wasn't going to happen until I'd swallowed enough jade. It made perfect sense until I woke up at the jade part and finished my sentence, with a mental image of myself downing handfuls of jade beads like they were prescription pills! Crazy.

So there's that, and I feel like I'm going crazy and my days are just a muddle of nonsense, but when I'm "sober" I'm doing quite well. There's a storm front that moved through last night and today and I am definitely feeling it! I'm taking my regular strong pain killers, plus a couple extra (since I now have that luxury when needed), and drinking an ale now and then to help give the pills some "oomph". I know you're totally not supposed to do that, but even with the really strong pain meds I'm at "take me to the Emergency Room" pain levels, which is saying something. Can you imagine where I'd be at should I not have the good medication that I finally have? I'd be done for.

I still think about the last few months before I found this pain doctor, and how excruciating they were, and how I was honestly dying. My body was under so much stress from the unceasing, incredibly high levels of pain and other symptoms that my vital strength was just… slipping away. Fading. My organs were shutting down, bit by bit. Blood tests tell me that the functioning is good, so I'm happy about that. I'm mostly happy to not feel like I'm fading away, to feel like even though I'm still sick and being "attacked by gremlins" (as we've decided to euphemize the situation) and that won't likely change in the course of my life that I can still participate and be a real person, not just a fading ghost or a memory of the friend someone used to have.

I have had some interesting new health news from the past few weeks of dr's appts, and that is that I have a double stranded DNA, whatever that means. I guess I have to do some more research on that one and what it can mean, but one of my lupie friends assures me that it can mean any number of things. Then there's the whole Mood Disorder thing; that was a bit of a surprise! All of the doctors and specialists I've seen in the past couple of weeks, though, have totally and completely supported my EDS theory and my work towards going to Tucson to see the Rheumatology Department there for a diagnosis, if possible. The pain doc brought up another possibility, due to my "testing positive" for Lupus again (from blood tests done just last month), and that is arthritic lupus, rather than the kind that gets in there and destroys your organs and whatnot. He is seeing more of an arthritic type of involvement with the pain than simple fibromyalgia can account for, so we'll see. I have been dealing with a very strong and potent case of pitting edema in my lower legs, ankles, and feet as well as intermittently in my hands and forearms, but I have a doctor's appointment next week to see if that's of any concern at all. 

I started physical therapy yesterday, and I can tell that it's going to be grueling but beneficial. I'll have to keep strong boundaries with my therapists and not completely destroy myself trying to please them, as I have energy barriers that most patients don't have to deal with I think, but my therapist is very understanding and good to work with, so I should be fine. We'll be focusing on my back, and also on exercises to help me lose the weight that I've gained this past year from the meds, improper diet, and a sedentary lifestyle. They will be very valuable, as I'm hard pressed to find exercise that are effective yet low impact and considerate of my physical de-conditioning. I realized during my evaluation with my therapist that I'm really a lot weaker than I've ever been.

Oh, one more "exciting" thing that happened is that my disability claim was denied. This was rather expected, as the odds of getting approved the first time through are notoriously low, but I was hoping that we might be one of the lucky ones. The "Tiara Fund" fundraiser that I started has really really helped to take some of the immediate financial pressure off of us that we were facing, and so has the monthly couple-of-hundred from BioDad, but honestly the financial difficulties haven't eased up at all. If anything, they've increased since my doctors keep adding more and more specialists to my treatment team, and while that's a good thing I just don't have the money for all of these appointment copays and the bills that follow after and the prescriptions I need to get by!  Just looking at the funds raised is kind of laughable, because what difference is $400 going to make in the grand scheme of things? And yet… it lifted a heavy burden from the Robot's mind because we were not relying solely on his paycheck for basic living expenses and medical funds. He makes enough to keep us in house and home, but that's it. If something unexpected happens, or if I need some money for medical stuff, that's a straw that'll break our little glass camel's back. Don't feel sorry for us-- we're doing just fine, and there are plenty of folks who have it much tougher than we do, I know that. It just does get tough sometimes, living with the constant stress of "how in the world am I going to pay for this?!", especially when the "this" is necessary medical help.

Anyway, enough of medical and financial woes! Exciting stuff, exciting stuff… this is getting hard to do, as I'm still in that "drifty" state where I keep nodding off to sleep in the middle of typing. It makes my words a little unpredictable in spelling, and also the content of my thoughts a little outrageous. That last sentence, for example, almost came out as "It makes my outfits a little unpredictable, but they benefit from it in the long run." I had an image of this radical blue tiger stripe tie dye shirt-dress that I was wearing instead of my usual more boring clothes, and I was genuinely excited for a moment about opening up the package and wearing it for a minute… until I realized it wasn't real and that I was supposed to be talking about words. Gaaah! Focus, woman, focus!

I have a massage in just a few hours, which can't come soon enough, as the weather that passed over brought me to the ground with pain and swelling in my legs. I tried to get Drogo to rub my feet, ankles. and lower legs, and he did so briefly and reluctantly, but he really dislikes massaging. It's like pulling teeth to get him to rub my back or feet or something. Doesn't matter that I could really, really use it or that he could be "fixing the problem" as he so loves and is deeply motivated to do, he just doesn't like it and is bored by it and so I go massage-less most of the time. I often wake myself in the night with my arms lifted above my head, massaging and stroking my hands and forearms, or my face and head and neck. It's kind of weird, but whatever. I'll get by. I always do.

I'm seriously flagging here, so I'll wrap things up by sharing the most adorable thing EVER! My friend the Artist went to a Comic Con  a few months back, and I was super super jealous because she got to meet the most amaaaaaazing people within the geek culture and see the coolest stuff, etc. etc. etc. So she paid to have an artwork commissioned for the Robot and I, but it's taken this entire time for the artist to get around to it I guess. Today she posted it on my Facebook wall, and she had some really neat things to say about it in the conversation we had around the picture itself. Another friend of mine also commented on our marriage in a very positive way, and it was very encouraging since I've been feeling a little discouraged about our relationship lately (a lot of it fueled by chronic stress, and insecurity over my appearance now that I've gained so much weight). We even had a "talk" on Sunday, which was mostly me talking at him and explaining what I was feeling and why and citing some examples and him explaining his perspective and me reordering and reorganizing my thoughts around this new information and realizing that we're actually okay after all and it was all fine and I was just breaking down under the stress is all but he didn't mind because he's awesome like that and just bore up under it patiently like he does and walked me through it. I could wish that he were more passionate in daily life, more demonstrative of deep affection and emotional displays, but it is the solid bearing up and the refusal to be flapped and bothered and moved out of place that signals his love to me, strong and sure as a beacon. I just sometimes lose sight of his particular version of affection and passion, start comparing our relationship to "others"… and let me tell you something: that doesn't work. Ever. Even if I were healthy and we did have the sunshine and rainbows that we so long for (because we've walked in a miserable, cold, rainy mist for so long now!), every relationship is different and looks different and functions differently, and my main concern ought to be "Are we healthy? Are we okay with us?" Because that's what's important. It's not important whether or not he does _____ like so and so does (although that would be super cute and sweet and nice), it's important that he is still here, and not going anywhere, and that he still thinks I'm pretty and that he believes that I can still do things but he also doesn't hold any illusions about what I can no longer do and he keeps me from sailing off of a cliff with the best of intentions to carry me forward. The picture that my friend commissioned, it's… well, it's perfect. It's us. And seeing it, reading her description of her hopes for its creation, really helped to remind me that what we have is perfect for us, and we have made no mistake in coming together and creating a life that is a blend of the two of us. We have done just what we needed to, and that's beautiful. We're beautiful. And seeing us from an outside perspective did a little something inside of me to push away some of the stress and make a cozy little space where I could just nestle down and really see and appreciate the beauty of what and who we are as a couple.

Without further ado (because I'm totally rambling now), I give you… the Robot and his Lady!

My friend the Artist (not the artist who drew this), says, "I know the one thing I really wanted out of this, was to show that through the ups and downs of stressing over bills, you battling your illness and Corey stressing over how to handle things, that no matter what you guys can make it. And together you guys make a great team, warriors and lovers, conquering any obstacle that comes both your way. I remember paying her during the time when I was up in phoenix when you were going through at lot when I was reading your blogs. So I figure this would be a perfect gift for you guys. and I am very happy how well she was able to illustrate in what I wanted." My other friends said, "Oh my God this is perfect," and "JFC that is so Corey. Look at that leer."

In addition to those little gems, the "this is perfect" friend and I were having a conversation and my sex life came up as a topic. She had this to say, which (combined with the picture and sentiment behind it) totally cemented my faith in my relationship and its unique power and beauty.
"You two will be fine. I personally find that sex is best with a person you already fiction well with outside the bedroom, and you two are made for each other. Inviting someone to come over and play is a unit decision, a group activity, and only works because you two are already perfect together on That level. You'll be fine."

Yep. We are perfect together, and no matter what we can make it. We are warrior-lovers! The Artist also said, "And during the time I was reading the blogs up in phoenix, I felt really sad and helpless not being able to somehow get rid of the depression and the stress that you were going. So I figure I ask this, that way it shows some happiness that it can bring about through trouble times. I mean I can choke illness out of people, but I do much best to try to create something or think of something to present as a gift through help of others such as this artist or form a gift by myself. And of course I did my best to pay whenever money I had for the sushi up when you had your doctors visit. But yeah, I am going to cry up a storm here when I keep talking like this. Anyways you have amazing friends that have your back, how about that :)."

And she's absolutely right. With the Robot/Drogo firmly ensconcing me in his arms and my amazing friends at my back, there is no way I can not kick ass as I live life facing the gremlins. My various diseases may never go away and they may never be totally tamed and managed, but I'm not going away or being tamed either. I will continue to wear my tiara to doctor's appointments and to paint my walker bright colors to cover the shame and anger I feel at having to use it. I will prevail, and I will do so with or without this elusive thing called "sleep"! For now, though… I'm going to try to catch some. :)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I made an appointment to go back and see my pain doctor this Monday. A week of this is hard enough (but I've been so good about taking my meds exactly as prescribed! Go me!), and I don't want to do 3 more. Maybe there's another pain med that will help me, oh I dunno… not be bedridden? Pain upon moving and exertion is one thing, but crazy bad pain from just being awake is really, really annoying. And this new aspect of my bones feeling like they're on fire? So over that. (Side note: I sincerely hope that this trip is less eventful than this past Monday's. I don't need any more crazy stories just now.)

Right. So. I wish I had other things to talk about besides my being in sick and in pain. I really do. I'm sure people get tired of hearing about it. I'm tired of hearing about it! I am tired and hurting and cranky and not feeling well, though, so I refuse to indulge anyone but myself. I wish I had some ice cream. I mean hey, if I'm gonna get fat I might as well do it deliciously, right? (On an only slightly bitter note, I am totally eating less than I used to. It's a fact. Consuming less calories and all that. So there, overweight doctor who is telling me I need to eat less because I'm headed towards being overweight. Suck it.)

Guess I'm still kinda cranky today. I can't sleep lying down these past few days cause it hurts too much, so I've been spending my nights propped up on the couch. It lets me get some sleep, but not much, and the quality isn't that great. Naps are great, though. Also, I haven't had sex in probably 2 weeks, maybe more. I wish I were exaggerating. I keep asking C for it, but he keeps putting me off. I think he just doesn't want to hurt me, and I've been really sick.

Please make a note of this, so that at my funeral you can make sure the eulogy includes the fact that what finally drove Cassandra over the edge and made her leap from a tall building was that the pain took away her sex life. (Just kidding. I totally wouldn't leap to my death. I'm afraid of heights! No, no, I've got it all planned out, and heights are not the way I'd go.)

I plan to try to jump my husband's bones today. We'll see how successful that is. I am still pretty sick, and in some pretty serious consistent pain… but endorphins! And seratonin! And oxytocin! And natural analgesic properties!! Until then, I'm watching Catching Fire and trying to distract myself  long and/or well enough to perhaps nap a bit. Another downside of sleeping on the couch, besides the fact that I don't get to cuddle C, is that the cats--Coraline in particular--see it as an open invitation to pet themselves on me and wake me up. Also my mouth falls way open when I'm asleep sitting upright and it dries out and tastes terrible. Who likes that?

It feels weird to be so irritable. I'm not usually like this. I'd rather go back to being happy-go-lucky. I said something to C the other day about some tentative plans we have for a few months from now, tossing out there that, "Maybe I'll be better by then!!" C laughed at me and said that my optimism never fails to amaze and amuse him. He doesn't know, though. Maybe I will be better by then. Maybe.

A girl can dream.

(Btw, if you want to watch Catching Fire online, I found it here. It lags a little, but I think that may just be my internet. I reduced it to 360p and it seems to be doing better; the picture quality is not really affected.)

So there's a lot of shiznit going down right now. Health problems, per the usual. I'm a bit concerned as to why my bones are so tender and why they burn. I don't think that's exactly a normal thing. My skin is pulling that "burning" trick to, and I don't like it, not to mention the chest pains and the random arm/leg/hand/foot numbness that's been hitting me. And the dizziness. That too.

Every time I take another plunge downward I comfort myself with the hopes that maybe this is just a temporary flare and I'm going to bounce back out of it and retain the level of "health" that I had a day/week/month ago. I think it's time to stop deluding myself. I've taken another very large step towards being completely disabled (yay pain!), and it's not gonna reverse itself without some medical intervention. Yes, still trying to figure all that out… I hope I don't end up a vegetable before that happens. My mom thinks I ought to be screened for various kinds of cancer. I can't say that I disagree with her.

Speaking of cancer… my friend is dying. My friend, the Chemo Princess, has been battling cancer for the past four years and is now going into hospice care. This is the woman that inspired me with the strength I needed to accept the newfound reality of being a fibromite somewhere over a year and a half ago. She is the one that has inspired me to find the beauty still abundant in my life and to sparkle, shine, and fight tooth and nail through these health problems. She's just so… uniquely herself. I've always been in awe of that aspect of her. I mean, I've known her since I was a kid. It was her wedding photos that made me want to get married in a meadow, which she and her husband did… in garb, I might add. He's a really cool, quirky guy too; an artist. He and his junk/jug band, Deep Fried Pickle Project, have sung some really funny songs. My favorite is "Don't Drink The Juice At The Bottom Of The Pickle Jar".

Anyway, it's just a hard reality to know that someone so awesome, who has contributed so much light, love, and joy into the world will soon be silenced. Like, really? Here we go again with that "why do bad things happen to good people" thing. It just pisses me off that such a wonderful woman and family are soon to be torn apart-- and have suffered so much already!-- and scum like G are sitting safe and sound with nary a problem. (Well, being in prison is probably a problem for him, but he totally deserves that one.)

Ugh. I have to go to sleep. I was trying to wait until the pain killer kicked in, but I really just need to sleep. I've got a doctor's appointment in a few hours, and C is coming with me since he has to run some errands anyway. Tomorrow, if I'm up to it, I plan to try to contact the right people to get a disability claim going. Almost 26, and filing for disability. What a life, eh?

Nah, it's good, it's good… I like being alive. I like it even more when I think of my dying friend, and wonder what she wouldn't give to have more time with her family. It's thinking of stuff like that that makes it so hard for me to end it on my terms. Like, there are people out there that would give anything for more time… so how can I throw mine away? It wouldn't be fair. It wouldn't be right.

I am feeling so overwhelmed and out of control… so tired of fighting. What am I fighting for?

I really, really wish that someone would say these things to me and really mean it. I wish that someone would just take over, take over the reins, and tell me to just rest. That they would take care of all the appointments, all the paperwork, the meds, the worry… to just rest, and I'll be taken care of. It's so hard to fight every single day and then have to fight for the big picture at the same time. Too many battles. Someone… anyone… please?

Give me your pain
Give me your anger
Let me be your rock
I can be the pillar of strength that you need
I'll help you keep it all together
It's better late than never
Lay your world on me
I can take the weight

We all laugh and we all cry
We all hurt the same inside
We all fall down and we lose faith in who we really are
But if we bend instead of break
The choice for us is to make it together
Lay your world on me

I'll help you keep it all together
It's better late than never
Lay your world on me
Lay your world on me
Lay your world on me
I can take the weight

The problem is, I'm a super strong badass. If I can't handle the weight of my own problems, who else can? No one. That's who.

Times like this, I'd love to fall back on the comfort of "give it all to God, he's got this and it's all gonna be okay." Well, I know it's all gonna be okay eventually, but that doesn't change the fact that it's goddamn hard right now, and that's what I'm having trouble with.

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.

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 am... depressed.

It came out of nowhere.

Could be entirely situational. Could be that I'm so very tired and worn down and hurting and just sick of it all.

Could be that it's that time of the month here in a day or two.

Could be any number of things.

Doesn't change what it is.

I want C to come home and cuddle me.

I want to sleep, and I want to cry, but neither of those are forthcoming.

Nothing but the pain. The never ending, always shifting, eternally pulsing pain.

If my pain killers weren't so precious, I'd take them all.

I've been walking in dark places lately, folks.

I know I've said it before, but living with the reality of intense chronic pain and the other symptoms of chronic illnesses just grinds you down, wears you out, and makes your soul shake from the strain of trying to hold it all together. I tell C, "I'm tired," and I don't just mean physically.

I'm tired. So, so tired.

I have a hard time wrapping my mind around the fact that I've only been dealing with this kind of life for about a year now, and not even a full year since it started out from nothing and worked up from there. It's terrifying to realize how much your life can change on the inside of one short year. It makes me fear for my future. A year from now, will I even be able to walk? To bathe myself? Will I be stabilized? Might I be better? Cured, even? I have no way of knowing, none at all. I could never have imagined living this way. I didn't even know that people did live this way. I did not know that there are people who spend all their waking moments in some level of physical pain, through absolutely no fault of their own. I just didn't know.

And now? I know. Dear god, do I know. And I'm tired.

I could list all the things I'm tired of, but I'm too tired to do that. My heart is just tired out.

I don't want to live this way any longer. I know I keep saying that, but it's always, always true. And it's been more true lately than ever, and I've been more tired than ever, and it all just has been culminating in some sad, bad moods. Yesterday was one of those days, and yesterday was the first time in a long time that I seriously thought about taking my own life, or at least bringing myself to physical harm. The absolutely terrifying part of it was the lack of emotion with which I contemplated this possibility, though. Always, in the past, my suicidal ideations have been accompanied by intense despair and distress, an intensity of emotion and thought that whips me into a frenzy, desperate for relief. I am desperate for relief, yes, but not frothing and foaming inside. I genuinely worried myself last night, so I asked C to lie with me a while and hold me and talk with me. He did, and it relaxed me enough to get me drifting off to sleep. Before I went to sleep, though, I sent J this fb message:

"I need help. Some encouragement. Really down cause of pain and sick. First genuine consideration of suicide today. What scares me the most is the total lack of emotion with the consideration.

I need something to look forward to, something to hang on to... Something to live for. Something to get me through because I am weak on every front right now."

She responded with this beautiful show of support:

"Cass, you are so strong and brave. Just the fact that you're asking for support proves that, because you're fighting a war no one should have to face, but especially no one should have to face it alone. You use so much courage every day that it only makes sense that you might borrow some at times!

And hey, the way you feel right now is normal - not good, but it's completely understandable that you feel like ending your life because of all the pain. You're not a bad person to have those thoughts. But please please don't act on them! Your life means so much to so many people. Think of your family - your little sister is going through her own private hell and when she sees you with your happy marriage and productive job, despite everything you have been through and still are going through, I'm sure it gives J hope. And K, and Jr, and your mom, too. And look at how you influenced that high school girl to seek help from an abusive relationship. You affect more people than you even know with your work. And would would E do without you? Or C? You know you give meaning and happiness to his life that he would not otherwise experience.

And of course there's me!! Who would I cry to about all my ridiculous heart-aches and drama?! Besides, I'm counting on seeing you at Christmas. So you can't let me down! 

I am praying for you. (Like it or not! Lol) I happen to believe that God's heart is breaking right now over your pain and despair and that He's longing for the day when He will come back and wipe away every tear, and there will be no more suffering, pain, or death. I don't know why He hasn't healed you now, or even why He hasn't come back yet, but I still believe He will and that He will make all things new. (Too preachy? Sorry.. what did you expect? Lol. But know I'm totally serious. I wouldn't bring it up at all if it wasn't so important to me. Sometimes that's the only hope I hang on to on the dark days.)

Hey, I love you so much. Hang in there, friend! There will be better days. Maybe not 100% better, but better. Don't leave the stage in the middle of your song!"

That, combined with a phone call from her checking up on me this morning, combined with an email from another friend... well, it really helped to give me something to hang on to. C told me last night that another thing I have to hang on for is our future child. He's right about that one.

It's just hard, you know? It's hard to live a life like this. I mean, I know everyone has their battles to fight, and everyone feels like they have it the roughest, and I know that I don't, but it's still so flipping hard.

I read this blog post by Fluted Cups and Ampersands this morning called Sick, Lonely, Brave (Illness is a lonely thing), and it really, really spoke to me. This was another thing that helped give me something to hang on to. I know there's others out there fighting just like I am... and while that doesn't make my pain any more or less bearable, physically, it makes the emotions of it seem less damning and more normal. So even though I'm not super adept at blogging about chronic illnesses and the underlying issues, this girl is, and I think her post is very much worth a read and a share.

Mom told me the other day that her hair has been falling out in clumps. She thought for a while it was just stress, but I told her to go see the doctor. They're running blood panels for thyroid, some other stuff, and for lupus. I hope it's not lupus. It would make my illnesses make more sense if it were, but I hope for her sake that it's not lupus. But, you know, even if it is... I guess I can give her some pointers on living the spoonie life. One of the most important things? Put together a good support system. :)

Still working with depression. Where I'm at in the menstrual cycle isn't helping. I suspect that part of it is due to hormones. Regardless, today was an off day, mentally. Sort of.

I am damn tired. Worn down. Beat up. This effing pain just won't quit, won't go away, and it's driving me insane. I mean, I can take it, and have been taking it, but you can only take so much, you know? I always tell myself that tomorrow will be the day I snap, because tomorrow never comes, so I'll always make it through today. Heh.

Today, though, I was a bit rebellious. Maybe I just gave into the "eff it" mentality, and maybe I just wanted to stop trying so hard to be good when it seems to help so little, if at all. Yeah, I ate something that I am really not supposed to. I think I am allergic to every single ingredient. Regardless, it was yummy. If I hadn't eaten that small portion of the forbidden goodness, I was legitimately going to go out and buy a pizza and a donut today. Cheese and veggies, and Bavarian creme. It was all planned out. But I didn't. Because of the other (free) thing. And while I didn't have any gut reactions to it (yet), I did have a small amount of throat swelling and itchiness/rawness. It felt like I had a mild throat infection. Scary. So now that it's more than just my guts involved, I'll probably be better about being strict... which means not cheating once or twice a year. (Really? Can I get much better about avoiding allergens? C and I don't kiss after he's eaten allergic stuff, and we even use separate sponges for crying out loud!!)

While I was out running errands, I also picked up a pint of ice cream for myself (safe ice cream!) and a bunch of movies from the library. I've spent the rest of the day watching movies and eating the entire thing of ice cream. Guess who doesn't care? This girl!

C will be home soon. That means he can finish watching The Fantastic 4 with me. I love that movie, simply because Jessica Alba is so smoking hot. I could watch her all day. C and I are supposed to take a walk when he gets home, though... which will be good for me, pain or no. I need to work off that ice cream. Hah. (Oh yeah... and those 13 boxes of cookies.)

Quick note of happiness: When C and I went back to PetSmart to exchange harnesses for Juneaux, the cashier asked me about my walking stick, since he's only ever seen me with my walker before. He asked what disease I had (one of the first to assume I didn't have some sort of acute injury!), and when I gave him a brief explanation of fibromyalgia (and mentioned the connective tissue disease too, but no explanation) he looked me in the eyes and said, "So you're just really tough, then." We all laughed, but that comment lit a warm glow inside me. I really appreciated the acknowledgment of how hard it is to live in constant pain from someone who doesn't see anything but a passing glimpse, and yet still sees how hard it is. That was cool. And you know what the funny part is? I'll wager that he has no idea how much that passing comment meant to me, or that I'll remember it for a long time to come.

I'm not dead, just lying low. I'm trying out a new type of pain reliever-- a sustained release patch. Aaaaaaand... not impressed. Either the dosage is too low, or this type of pain killer just doesn't jive with my body chemistry. It's been a very painful day.

C will be home soon. We'll watch the last episode of the first season of Farscape, and then I'll probably be calling it a night. I'm tired.

You shout it out,
But I can't hear a word you say
I'm talking loud not saying much
I'm criticized but all your bullets ricochet
You shoot me down, but I get up

[Chorus:]
I'm bulletproof, nothing to lose
Fire away, fire away
Ricochet, you take your aim
Fire away, fire away
You shoot me down but I won't fall
I am titanium
You shoot me down but I won't fall
I am titanium

Cut me down
But it's you who'll have further to fall
Ghost town and haunted love
Raise your voice, sticks and stones may break my bones
I'm talking loud not saying much

[Chorus:]

Stone-hard, machine gun
Firing at the ones who run
Stone-hard as bulletproof glass

[Chorus:]

This may or may not be coherent. Fortunately, I only write for myself, so I know I'll understand me. That's a relief.

I want to preface this with the acknowledgment that I am a warrior, and a damn good one. I fight battles that many people will never, ever have to face in their life. I stare down intense chronic pain on a daily basis, and I win. Every day. I know I'm a fighter, and I know that I'm loved and cherished beyond belief. I also know that it's all going to be okay.

That being said, I will now proceed to lay bare my fears, vulnerabilities, and anger.

I spent a good portion of my evening and night in the emergency room last night. On Sunday, I spent an hour in the heat and that set off a migraine that was still super severe 24 hours later, and I couldn't get it under control with my pain meds I had at home. On top of that, I was having full body pain and fever and the damn twitchies were back, which exacerbated the pain. I could not handle it any longer, so I went in for help with the migraine and for pain control. (I was afraid of overdosing on acetaminophen with the current route that I was on.) I ended up sitting, waiting for a bed, for hours... twitching the whole while. It was kinda funny. What wasn't funny is that for the last hour or two I was in tears from the pain, weeping openly at a couple of points... but there was nothing they could do to help me until a bed opened up. Once they got me in, I saw a doctor and was injected with pain meds within the hour. I also got a referral to a neurologist, which is in the works.

The thing is, as relieved as I am to have gotten some help, it comes entangled with a whole host of other problems. Money problems. Health problems. Family problems. The implications of all of those.

I'm stressed, y'all.

1. Money- basic living expenses
2. Money- J's wedding
3. Money- medical bills
3a. Money/Health- prescription costs
4. Health- sickness, current and progressive
4a. Health- new symptoms
5. Health- diagnoses, current and possible
6. Health- pain control
7. Disability- to file or not?
8. Food stamps- do I qualify now?
9. Family- Mom and R divorcing

Can you tell I'm worried about money? lol. We're literally barely making ends meet. Stuff keeps breaking, like C's truck (or his battery), and we were already strapped because of the house and moving and all. Then we got the news that Mom and R are divorcing, and while I'm supportive of the decision, it means that my going on C's insurance a year earlier than planned is going to take $300 a month out of his paycheck. Oy. Not to mention that I have to get on his phone plan and his car insurance as well... Plus the added bills that living in an actual home means... C had it planned out well, but life happens, you know? Excrement transpires.

It's not that I'm worried, because I know we'll be okay, and worrying doesn't put money in your pocket, but it's just that... I guess I feel really badly because I'm the cause of a lot of these hikes in expenditures. I know that my medical bills are high. I know that it costs a lot to feed me. I know all this. I can't change it, but I know it... and it's awful. We've both cut out any unnecessary expenditures in our lives, but we're still just... barely making it. I've been trying to think of other things I can do to cut down expenses, like maybe buying less food, but I only get the basics, so... it's just expensive, not being able to buy the boxed and canned stuff. I feel helpless to make any meaningful, positive change to our situation.

And here's the kicker-- I wouldn't worry about it so much if we weren't also trying to save up several hundred dollars to make it up north in a month. I thought we could do it. I really did. And we could, if shit would stop breaking down! All of the several hundred that we'd allotted for the trip has gone to fix C's truck... the very thing that we need to have running to make the trip. Go figure. I'm tormented about this. I want to make the trip so bad, and I promised J that we would, even if we have to put it on my credit card, but I'm not sure I even have enough on my credit limit for that. Since R and Mom split, C has had to take over sole financial responsibility for my med bills. R gave me one last $80, but I've already had to put several prescriptions and copays on my credit card. I feel like I'm up a creek without a paddle here, and headed for a waterfall.

A lot of my torment is my promise to J (why, oh why did I make a promise?!), but I also really, really want to go back home again, if just for a visit. It won't be the same without D, of course, but I miss it so very badly... and I want to show C off. I want to show off the place to C, and C to everyone up there! lol.

I'm also still struggling with a loss of identity in several ways. Having this bad flare/migraine brought on by the heat shows me that I am, indeed, very heat sensitive now and can't afford to be out in it for long. That means that my dream of hiking the Grand Canyon rim to rim, or at least to the bottom and back up, may very well be beyond the realm of possibility.

Damnit! Can't I have just one dream that doesn't get snatched away by my stupid health problems?! I don't even know if I can have kids, I can't hike anymore, I can't hold a job, I can barely drive myself around right now, I can't keep a spotless house... what is there left for me to do? I still sing, but you can only sing to yourself for so long before you go crazy. I write, clearly. I read, when I can. (Funny-- I took a book with me to the ER to pass the time, but then found I couldn't read because of the migraine! Hah.)

It's not that I don't love my life, because I do. I love my husband, and I am blown away by his commitment to take care of me. It flabbergasts me. I just hate the position that I put him in, having to work 7 days in a row because of the overtime he's taking to try to make it all work... and I feel like I can't contribute a thing.

That's not true. I'm going to work tomorrow, no matter how terrible I feel, because I need the money to buy groceries. C can't afford food until he gets paid. I think he had $7 when we last looked at it a few days ago. I'm glad that I have a boss that is understanding, because she also kicks ass with an autoimmune condition and intense chronic pain. We are quite the team, us two cripples. LOL.

I've taken enough pain killers to put down a small mammal, and I'm still at the place where I'd like to take more, because it's enough to make me squirm. I'm used to dealing with a lot of pain, but this is... ridiculous. At least I don't have the migraine as well. Just a shadow of a headache.

So I am grateful. But there are a lot of battles for me to fight, and I'm tired right alongside my grateful. I'd like to catch a financial break. I'd like to go to Id. I'd like to be cured. (I think.) I'd like it if my hobbies and dreams didn't keep getting crushed. I'd like a pain killer that actually does what it's supposed to do. I'd like cookies. I'd like a puppy to snuggle with. And while we're at it? I'd like temperate weather that I can enjoy without dying one way or another.

How do you accurately convey the ever-changing blend of, "I'm optimistic, I'm a fighter, I'm a warrior, and I'm not going to let circumstances out of my control get me down" and "I'm really tired of this and wish I didn't have this fight to fight anymore"?

Hurting today, from the moment I woke up. I'm not surprised, given that I was in the Urgent Care/ER for the better part of Thursday night and the wee hours of Friday morning for uncontrollable full body tremors/spasms. They think it was a rare reaction to the gabapentin, but don't really know. All I know is that they pumped me full of Valium (twice!) and I spent the next 24 hours drugged and woozy. My muscles are sore from the hours of tensing and spasming (and where they stabbed me with those super painful needles), but that's better today. It was just a weird, weird experience. I thought I'd up and gotten MS or something. I wasn't scared, but I was apprehensive... and all I could do was crack jokes at any and every opportunity. I'm not sure C appreciated that one much. It was hard for me to know how to relate to him, because he was... well... not worried, per se, because it was clear that whatever was happening was not life-threatening or injuring me in any way... but he was definitely concerned. Pacing. Watching me. Holding me and stroking my hair, my back, my hands, making sure I didn't shake right off of the chair or bed when the spasms would get particularly violent. Holding me up so I could "walk" to the various rooms/clinics/etc. Carrying me into the emergency rooms in his arms (and scaring the nurses because they thought I was seizing!! LOL) He sat there with me the whole night, solid as a rock. It was a comfort to have him nearby, especially when I finally slipped into sleep in the wee hours of the morning.

In any event, the rheum told me the other day to try the tramadol again for a few weeks since the Ty3 makes me sick, which is basically a "death sentence" for any kind of hope for relief from pain. I took 3 at one time last night, as well as two individual hot soaks, trying to get the pain down to an "I can sleep now" level (because I was still soooooooo tired!), but it took a really long time, some extra stretches, and my Yoga Pandora station to finally get me drifted off to sleep. It never did knock down the pain, really. Once I was out, though, I was out.

While I'm bummed that I missed C's only day off for a while by being completely loopy and woozy, the day before was actually a nice day. I was not feeling well, so I asked M if he would drive me around to get my errands done. He came by to be my chauffeur, and we had a grand old time. I enjoy conversing with him, and we have a lot in common, I think. We both love music, although he is much more accomplished and intelligent than I am in that area, but I think I'm gleaning things from him about music theory which I'm grateful for. We even ended up at Goodwill, and he threw some money at me in the form of buying me some well-loved books I stumbled across. I was guilty-grateful for that. (Yes, still with the same guilt issues that come from being there when people spend money on me. I firmly believe that it's got its roots in some self-worth issue somewhere, but I don't have the energy to try to root that one out right now. I'm tired.) I think I told him several times, though, that I just plain had fun. I haven't gotten out of the house to do anything with friends for a while now, and it was really just enjoyable. I felt almost normal for a while there!

It wasn't until both M's had cleared out that evening and I wandered off to bed that I began having the full-fledged full-body tremors, though I had been extremely fatigued that entire day. I just don't know what's what and related to what anymore. Who cares? I just know that I'm really tired today, I'm hurtin' like a big, pulsing, electrified bruise, but I'm also strangely optimistic.

Yes, I'm tired of dealing with the pain and such, but something that M told me while we were discussing it gave me a lot of hope. We were discussing how, on the whole, I have made steps forward in regards to dropping pain levels. (I have! I have! When you look at it over the span of months and months, I can see myself inching forward!) Yet, at the same time... I am oddly fearful of "getting better". I know that with the autoimmune stuff and with something chronic like this, I'll never be totally free. I won't. And while that's comforting because it lets me know that I wasn't just malingering for a season of my life and exploiting those around me, on the other hand it's kind of depressing. I still struggle with that black and white mentality so much, though, that it's either I'm "sick" or I'm "better". So if I get "better", then I was never really "sick", now was I? I mean, I could have gotten better at any time I chose, right? So it was my fault, then wasn't it? But if I never get better, then that validates the understanding that it's not my fault, that I'm not choosing this, and that I am trying my best, really.

I didn't articulate all of that, but touched on a few things briefly. Anyway, he pointed out that when I'm better I'm still just going to go out and help other people who are struggling and fighting in the way that I am now, and I'm still going to be kicking ass, so why worry about it? It made me think of the HJ, the work I'm doing now... how being in a better place, being in an awesome healthy relationship, doesn't mean that I was never abused. Hah! Right. That's laughable. But I can turn around and help others who have gone through similar things the best that I know how. I guess it's the same.

So while I'm whimpering and licking my wounds and thinking "good grief this sucks, I'm so grateful for pain killers!", I'm also thinking... "You know? I'm pretty badass, especially on tough days like today. It's so easy to be happy when you're not hurting. It's days like today that remind me I'm a warrior."

I hope I can remember that throughout the rest of the day. The morning is young, yet, after all...

And yes, I know you're reading this. So thanks, M. You were more of an encouragement than you knew.

Note: I learned another step in a valuable lesson yesterday, too. I can ask for help, and people will respond and help me. And it is not an imposition or a burden. If it were, they would say no. How do I know this? Because I am careful to surround myself with healthy people, or ones that are trying their damndest to be healthy and whole... and that means that our friendships and relationships are also healthy. And that means no manipulation on either side. And that means that asking for help? It's really just asking for help. And the help that is given is given freely, because we're friends.

Now that's a cool place to live.

On C's advice, I took a super-dose of Tramadol last night. I could definitely feel it affecting me, but more importantly I could feel the pain draining away to super low levels. Then again, maybe not? The hard thing about being in such high amounts of pain is that it totally screws with your perception of pain in general. I can no longer really place my pain levels on a scale, though I do for the sake of understanding for those who aren't in my body, meaning everyone else. In any event, the pain levels are low to medium-low today compared to what I was going through recently, and that's enough to make me want to do the Macarena or something.

Although my balance and vision were screwy, and my stomach hurt until I drank some soothing tea, my pain was blessedly masked, and I fell asleep quickly. The pain is back today, but not at such high levels. It's getting worse as the day progresses, but I'll just super-dose myself again tonight if need be. I know that my poor body is very tired from the battle its been fighting just recently, so even though I feel "better" today and the temptation is to leap into action and get stuff done, I'm making a conscious choice to be kind to myself and to my body and just rest today. Get a few things done, sure, like laundry and arranging the flowers that D and R brought with them to C's barbecue... oh! C and I are taking a walk together when he gets home! I'm looking forward to that :) And I intend to shower today, as it's been a couple of days more than it should be since I last did more than just soak in a tub of hot water. That should pretty much do it for me. Most of the day, I'll be resting, because I want to be good to myself. I deserve it! Especially after the hell I just suffered through. There are only a few people in the world I would wish this kind of existence on, and they're people that have wronged me greatly.

J brought up an interesting point today in passing... Those around me, friends and such, feeling bad/sad because they're helpless to help me or alleviate my pain. It's got me thinking, really. I don't want to sugarcoat my life, especially here, because I need an outlet of some sort. In person, I do a pretty good job of smiling through the pain, but the internet is where I can bare my soul and find support and humor from fellow survivors. But should I really be so honest? Should I be more Stepford Wives and pretend that everything is fine?

Nah.

Here's what I think: Even though my pain may make those I love and who love me uncomfortable because there's not a damn thing either of us can do about it, I'd much rather they know because it is now a part of who I am and how I live my life. To hide a part of myself for the sake of reducing possible uncomfortable experiences would kind of negate the point of the friendship. I fake it with those I don't care to let very far into my life. Those that I let in, it's because I know that even if it hurts them to see me hurt, they will still treat me like a normal person. As much as I sometimes desire to be coddled and swaddled and waited upon hand and foot (though I think that's normal--hello, Mother's Day!), I so much more appreciate the real acknowledgment of my limits, expressions of compassion, and continual good humor that they put forth. So J, how to relate? Just keep being my friend. I'm sorry my pain makes you sad. It makes me sad, too. But just keep being my friend like you always have, and don't get upset when I'm too worn out to want to deal with people at the moment... even awesome people like you.

On another note of pain... D's memorial is this weekend. The closer it gets, the more I kinda don't want to go... because if I don't go, it's not real and it didn't happen, right? And if I don't deal with the pain, then it's not there, right? Right?

Ugh. I'm going to cry so very, very much. I'm dreading it, honestly. I don't want to face this grief. I want to pretend that D is still alive off in the far-flung land of Id, and I just haven't heard from him in a while (which is not uncommon at all), and this has all just been a big misunderstanding. That's what I want. I want D to still be alive. I don't want to attend a memorial service in a church that will be stuffed to the gills with people that I don't know who also loved him, or at least liked him, and I don't want to see his family or Gaga because the last time I saw them we were celebrating another year of life for D.

But on the other hand... I do want to see C and the girls. I know they understand this special brand of grief that comes from having shared a home with D. And finally, I will have someone to grieve with who knew D. I won't be alone in my pain, at least for a few days. There is that.