Well hello again, world. I apologize for the silence, but it's hard to blog when a.) you don't have much to talk about because your routine is… lacking, and b.) when what energy, mental or otherwise, is appropriated to tasks and hobbies more likely to bring an immediate benefit, like sweeping the kitchen floor so I don't have to step on little pieces of cat litter. (I walk around barefoot most of the time, and secondary to water on the floor when I'm walking in socks, litter/gravel on the floor is a huge pet peeve of mine.)

Anyway, I've just been trucking along, making the best of things. I've been more social the past two or three months, attending "events" or going to friends houses. I've managed to get the right pain meds the past couple of months, and in the right quantities, so that's been a huge relief. I still get super anxious and stressed the closer the month rolls to my pain appointment, but that's something I can't help. It's not even a conscious thing, like a mulling over of all the bad things that could happen the way we do sometimes, more like a subtle buildup of pressure that makes everything seem a little more hopeless and overwhelming than it would otherwise. But when I'm aware of it it's easier to look at things as objectively as I can. I'm just getting so worn out. This battle of pain and nausea and throwing up when I drink more than a few sips of liquid at a time (that one comes and goes, but I'm never sure when it'll show up until I start heaving), the muscle cramps and spasms, the unaccustomed weakness in my limbs, sheer exhaustion, all kinds of other "fun" things… it's taking me down. I just wish I could have a break, you know? But then I'd probably be even more devastated when the break was over and it all came rushing back. Things are tough, I'm not gonna lie. But I'm handling them to the best of my ability. Is there anything more any of us can do in our lives?

I was denied disability last week, maybe a week and a half ago. I don't remember the exact date. It's not the kind of denial I can appeal, either, since it's not a decision of "you're not sick enough to warrant our help" but one of "you don't have enough work credits to qualify for one program, and your household makes too much money for you to qualify for the need-based program, how dare you try to exploit us your greedy wench". It was a hard blow, to be sure. Corey and I were counting on someday breaking out the other side of the maze of red tape and appeals and paperwork and getting some actual monetary help that we could depend on. As things are, it is only the donations of friends and family that are keeping us going by paying for my medical bills. I'm working on a few other legal ways to reduce costs of scripts and a few other things, but it is the same story of a process that takes months and months and years to get handled, so until then I'm still paying $600/month for all of my medications combined. That's just not a sustainable amount, not when you've got two people and 3 cats living on one paycheck. But it has to be sustainable, or else this little lady ends up in the hospital indefinitely, which is an astronomically more expensive possibility.

I am needing to go to the store to pick up some groceries and such, but I'll try to get back here and finish tonight or tomorrow. I'll be spending Thanksgiving with my Grandparents, so maybe I'll jump back on and write a bit more then as well.  All told, I'm pretty happy these days. (Oh. Looks like Corey is making some food, so… I guess we're waiting for a bit?)

So financially, we're panicking a bit, but I'm sure that something will come up if I just put more work into it. It took SO MUCH of my time, this disability bullshit, and I spent so much of my valuable energy and spoons on the research and filling out forms and phone calls and finding a lawyer and… all the homework. And now I have to do more homework because of that stupid ruling. I'm incredibly frustrated about that. Make the healthy people do that kind of thing. They have energy and to spare. All of my spoons are precious, and I don't want to waste them on the government's red tape. I'm having a difficult time conveying the deep rage and contempt I have for the system that has screwed with me for so long. This whole experience was infuriating to the deepest depths of my atomic structure. I was hoping that eventually I'd be done with it and be able to move forward with other challenges. Because it's never easy when you're sick and in pain and disabled. No, everything is constructed to be as difficult as possible, because why should anyone make things easier for someone who is already fighting battles that the average person cannot comprehend, every second of every long, exhausting, interminably awful day. No, no, let's make things harder, so they can prove that they really want it. Pfft.

Gah. And here I was, going to try to be all optimistic and paint a pretty picture about how well things are going and how well I'm handling everything and how nothing is really a big deal… but to be completely honest, I'm infinitesimally close to being DONE. So done. I'm exhausted. Down to the dim reaches of the cells that comprise me, I am exhausted. Just waking up and facing the day is an ordeal. Not only am I physically burdened (seemingly more and more and worse and worse as time goes on) but my mind is constantly spinning with "how am I going to do this?" or "I need to do ____ and _____ and ____ and ____, so if I do ____ will I still have some juice left in me to at least attempt ____?" I'd rather not do either. I'd rather pull the blankets over my head and ignore the world until it's time for my next med dose. I can't ignore the world when it's time to take my meds, it hurts too much.

I'm stressed. I'm exhausted. I'm sick. I'm failing at the goals I've set for myself, and I feel like nothing more than a human vegetable most days. Being more social, spending more time with people, has been nice, though. I've enjoyed that. I began to really miss people this year, 'cause it's hard when you can't go to your friends but they have to come to you. It's inconvenient, and no matter how well meaning folks are eventually it just becomes too much of a hassle. They're too busy with work, family, church, hobbies, their own illnesses… just life. And I get that. It doesn't keep the days from blurring into one another with the sameness of it all--get up, meds, try to eat something, try to drink something, maybe read for a little/watch a movie or show, meds, try to eat/drink something, sleep, meds, sleep, cats, try to eat/drink, sleep, Corey gets home, show, sleep--or keep the nip of loneliness at bay. So it's been nice to hang out with friends and laugh again.

A more recent friend of mine, CO, took me with him to the Dungeons and Dragons game group that he joined a week or two ago, and it turns out that I already knew most of the few people there! It was a pleasant, funny surprise :) My old friends weren't expecting to see me, of course (of all things, right?), but it was nice for them too. I am going to continue going, and maybe even join in and play myself. I played for a little while with Michael but I'm no expert, not by any means. It would be nice to play a game where Corey isn't also a player, though. I tend to rely on him overmuch, because I'm still so clueless, but I want to do it on my own, take my character in my own direction, learn the game myself, you know? Then I can come back and play with him and stand on my own two feet as a player with her own distinctive style and knowledge.

Anyway, that's neither here nor there. I'm trying, I really am, but it's hard when your world is made up of one uncomfortable, painful thing after another. I'm trying to keep my eyes on the light, but lately it's just been disorienting as hell.

Warning: this will be a rant. It will contain negative things, even though good things happen and work out in my life too, because that's what I need to clackity-clack right out of my head and lightly boiling veins right now.

So.

I just spent the day in the company of a woman who reminded me at least once an hour of the many mistakes that I made yesterday while operating under crazy stress, tons of pain and flaring, and 3 hours of sleep in 2 days. And she just couldn't let it rest and how upset it made her and all that jazz. I got REALLY sick of hearing my faults reiterated, especially when I'm already stressed and overwhelmed to the max and barely operating in "human" mode through the stress, crazy severe depression, and fun fun symptoms. So of course I overdid it carrying my own stuff and such, because I was already "below" her and I couldn't let her feel anymore, well, entitled because I really couldn't bear it.

She's not a bad or evil person. We had some good times, laughed a lot through the convos. But no matter how much I explained my intentions within the mistakes that I didn't know I was making and apologized with full owning of my own responsibility, she just could. not. stop. bringing it up. For instance, when I explained that I was late to pick her up this morning with Grampa (yes, and never texted ahead to tell her), I explained that it was because I was throwing up when Grampa got there and had to kinda stop first, and also I have only been out of the house lately at 2 a.m. so I forgot to factor in work/school morning traffic. Her reply was to ask why I didn't text her while I was vomiting? Yeah. Sigh. But, hey, we did have some fun here and there, cause she's a decent person and funny, so it wasn't a misery every second, but I felt very trapped and under a microscope. I know she's in a stressed condition herself, so I'm seriously hoping that all of…that… is just another misunderstanding brought on by stress and the awkwardness of not really knowing one another. The ways that we interpret things seem to be at complete odds to each other. It was just… I dunno. It was just a lot of conversation that made me feel like a shitbag for being, well, me. Like everything that is just intrinsically me and me living life is a pet peeve of hers to some degree or another.

I am overly sensitive right now, I know, but I really don't want to spend time with her in the future under my own volition. I don't want her in my home because it's my sanctuary, the one place where I can fuck up but cuddle my kitties and know that I'm still a person that other people like, or to just fall apart and slowly put myself back together bit by bit. If that gets tainted because she misunderstands something I say and starts giving me shit or gets mad or something, I feel like I'll be losing something important. However, her husband is the one that I have been building a friendship with, not her, though I'm not even sure how or if I'll be able to handle him for a while, and he and Corey have already bonded as nerd bros, playing Magic and talking about DnD campaigns and running Diablo dungeons together, etc, and I absolutely do not want to ruin a budding friendship of Corey's. Too many of his friends have moved away, and our social circle has become practically nonexistent. It is the tatters of the tatters of the original, and it is sad because he works such odd hours that he can't just go out and go to… something… and he doesn't like sports, and other stuff. He prefers his friends be close to his level of intelligence, so that cuts out a huge portion of the population right there, lol. Anyway, yes, the guys are building a friendship, and the guy and I are building a friendship, but I don't know how much I am expected to like or interact with the wife in the future of said friendship. However, they have a style of communication that seems to be similar to what Corey and I have, so they share anecdotes of the conversations they had throughout the day, including texts and such, so it's not like I can even tell him any of this without having the whole thing blow up in my face like it did this time and who knows what the hell will happen then. Only the next time I'd be expecting the explosion, so I might be able to duck. I'm tired just thinking about it. I couldn't wait to get home. So much for the claim of hating drama, cause this shit has been pretty dramatic in some ways.

I'll give you a tip for life and interacting with people: if somebody fucks up, even if it seems like a major deal to you, accept their goddamn apology like a decent human being. If they are sincere, that is. And I was. And… yeah. Never heard an acceptance of that apology, assurance that we were cool… just an endless recounting of her offended sensibilities. I went back and read my texts and hers and I can see her side of things now that I know what to look for, but I can also see that I didn't mean any of what she interpreted, so… it was basically a horrible day, because she was my ride to LA and back for the pain doc appointment. That went okay, not an abysmal tragedy like last month where I was running from pharmacy to pharmacy to find one that had the stock to fill my prescriptions because the DEA/wholesalers are mucking up the system thanks to the "war on drugs" that's ruining my ability to have a semblance of a functioning life.

//break for rant regarding current difficulties with "the system"//

I am very lucky I didn't end up in the hospital this month, being forced to quit a serious and strong dosage of a formidable type of pain medication cold turkey, as I couldn't find a pharmacy that had the ability (or willingness, *ahem*) to fill even part of my script. Do you know how freaking dangerous that is? And with the Intractable Pain that could already severely damage body systems when let run unchecked as "the system" is forcing me to let it remain unchecked? What happened last month could literally have killed me, or turned me into a total cripple. It's terrifying, having cold impersonal forces playing with your life and livelihood and having such a limited ability to impact the outcome or the process itself. Fucking terrifying. Especially when you're talking not only livelihood, as in the ability to dress yourself and shovel food and liquid into your mouth and deal with the digested products, or even the ability to sleep in a normal manner, but when you are talking about your literal life. And mine is not even 3 decades old. If something terrible happens to me now, I will have to deal with that for, well, the rest of it, and I really, really have enough to deal with already.

//end rant//

Today's experience remanded me that I've been feeling very strongly lately like people just don't understand what kind of pain I'm in or that it's bad enough to make me really sick, like, all the time, and it's really easy to brush off exactly how hard every little thing is for me.  That could probably be because I am smiling and laughing and chatting with the person, walking around as much as I can handle at the time, etc, because I hate being a burden and being beholden to people, and I really want to keep as much independence and dignity as I can. But life is hard for me and getting harder by the month, so let me rectify that bit of ignorance with a brief explanation that may lend itself to a better understanding. It's difficult to truly comprehend unless you have experienced it, though a good effort might get you close, intellectually.

So. Imagine that you've gotten into an accident of some kind, perhaps a vehicle on vehicle crash or being hit by a truck while you were moving in front of it as a walking pedestrian or a bicyclist or maybe on a motorcycle. You get hit by this other vehicle and you are slammed around all over the place cause you flip over at least once and make sure that all sides of you are evenly "tenderized", hehe, before you come to a crushing halt due to reacquainting yourself with the Lady Gravity, who is a cruel mistress when shunned even briefly. Immediately, you begin to feel the effects of this reaquaintaince, especially if your imagined accident included you being actively run over by the vehicle that hit you, which would be a nice and accurate touch. As you groggily try to sit up, you notice and begin to catalogue the various pains and injuries you've just acquired, though not through any fault of your own. It was totally out of the blue and not your fault, but you're sprawled on the ground regardless, so you try to be productive and figure out what still works while you wait for the ambulance.

Skip forward to, oh, say, the hospital. You have realized the extent of your injuries, and the full understanding of what life is going to be like until you heal up is beginning to wash over you in confused, concussed waves. You can't quite think straight, and you're getting words a little mixed up, dropping some completely, and using Spoonerisms for the first time. Your head aches with every throb of your pulse, any noise or vibration that comes from your pipes, every slight toss of the head. In fact, even scratching your eyebrow leaves you wincing and exhausted, but you've just noticed something else: everything hurts. It isn't a collection of various pains that kind of wait in the background until attention is turned to them to speak up, no no. Nothing so shy and considerate. These are all large, strident pains made of many different flavors and modes of operation. The pulled and strained and bruised muscles are a fierce, tight ache that clenches in on itself  the longer it continues, underscored by a constant, full body throbbing ache. You feel like a giant bruise, and when you move the injured muscles they seem to complain with the stiffness already settling into the joints and tendons, sending sharp, unpleasant stabs of pain through the abused tissues.

You find that all of your bones are broken. All of the major bones that hold you up and keep stuff in are cracked like so many sturdy twigs. No bones sticking out anywhere, but definitely all at least cracked enough to compromise their integrity. Not only are your muscles constantly complaining at you, but now your skeleton cannot and will not hold you up as it was intended to do as its integrity has been compromised. Your muscles have to kick in overtime and extra strength to make up the lack, but that only causes them to tire faster and begin to cramp and rebel that much sooner, and they were already bruised and throbbing and not happy before the added work. Since all of your major bones are broken, you will now have to rethink every single aspect of your daily routine. Your hands and fingers hurt too much and are too weak to support your pen to sign your name, or grasp your toothbrush, and there is no way that you can shower with any regularity or without some kind of assistance. Using the remote to navigate through Netflix is okay for one or two clicks, but just holding the remote in the air can only be done for a couple of seconds, if you can manage it.

Your legs just don't hold you up so well right now, what's more they hurt like crazy all the time, from the inside of the bone itself all the way out to the skin, and you need help getting up, getting down into chairs, standing if there is no wheelchair/walker nearby, getting in and out of vehicles, getting into and out of bed, putting on pants (because legs and hands are broken, so of limited use), and putting on shoes is so far beyond you that it's not even funny. You can't wear a bra of any kind because of your poor tortured ribs, and in fact you can't wear most or any of the clothes that are typical of your wardrobe because they bind in places too much and cause untold agony with their rough fabrics and their awkward fasteners and cutting into tender skin and the sheer volume of energy it would take to don and doff those duds.

You also can't sit or lie in certain positions or for very long, and you have pillows everywhere to cushion your delicate, pained self. There's not much to do because you're limited to lying or reclining, because when you get up from the prone position everything goes black briefly and a very loud rushing, roaring sounds fills your ears and drowns out everything else for the next minute and a half, at least, though it gradually fades. You could watch a movie, or maybe read a book, but good luck paying much attention to it, the way you feel and the nausea that's sloshing around in your mostly empty belly. You can't stand up to cook, either, so it's whatever you can throw together in the time that you're upright-- if you haven't passed out on the floor or something by then--before you somehow drag your poor carcass back to whatever piece of furniture you've claimed as your kingdom and throne. (Shoot, it could be the actual "throne", whatever works for you.) You're not really hungry, though you probably should eat so you can take your meds on time in a bit, but your pain levels are rising rapidly and you can feel them going through the figurative roof. You use the bit of pain management that you've been taught and it seems to work okay for a microt or three, but then the pain distracts you again before you make much headway. You really, really, really need another dose, but it's not time yet and you don't want to be accused of being a druggie, or addicted, or run out early and be flagged as addicted and not be able to access the medication you need in the future, so you wait. You wait till the proper time and write it down where you're keeping track so you don't mess up the schedule that will make your meds last until the next fill.

Now, though, the pain is raging and it is way too intense to be stopped by that silly medication, so you suffer in this horrible cycle of "I have to wait, but I'd like to take another pill NOW" and "While I was waiting my pain went up 3 scale points, and I need to go to the emergency room now because I can't handle this here at home", but the ER doesn't want to see you either, so you… cope? Somehow. Urgent Care, perhaps? While you are weighing your options through your frustrated, angry tears you realize that you're pouring sweat while shivering lightly, and you realize that you have yet another fever for no real reason. Shaking your head very, very carefully and very minimally, you turn and crawl home (figuratively) to lick your wounds in the privacy of the walls you call home.

--------------------------

All that I wrote about the experience of doing life after the injuries is "a day in the life" of a young woman with very, very severe Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome, among several other goodies. Well, I can use my hands better than I wrote about for now, so I can brush my own hair, put my clothes on most of the time, brush my teeth, use a pen, type (obviously), but shoes are still very difficult for me. It hurts too much. Muscles, bones, joints, skin… all of it.

So there, people without severe pain diseases. THIS is what I'm experiencing when you come over to watch a movie, when you are giving me a ride to the doctor or the store, when I'm surfing Facebook and participating in a Poke War, when I volunteer to help you do anything… always. It feels like this *always* for me, and that's just my "new normal". I hate it, and I miss being more independent, and I feel like I'm about to lose my freaking mind sometimes when I'm flaring for whatever reason and my personal pain scale has to stretch to accommodate new numbers, or when yet another medical bill appears in the mailbox. I hate the fact that it never, ever goes away or lowers to an ignorable level. It's always there, always distracting me, always chewing at my brain and body, but it does carry with it a measure of pride, feeling like a Spartan among commoners for the commitment it takes to still be civil to people when you feel so shitty, to still TRY when every day is the same, a variation on a theme, and you pretty much know how it'll turn out but you fuckin' try anyway because you can't quit. It's kind of not an option when you're trying to life.

So with that in mind, I'll just try to be civil to the lady who hurt me so badly today, and see what comes of it. I'm too tired from trying to life to do anything else. I have been operating at max capacity for stress and obligations for weeks now. Priorities. And she just… isn't one. I'm not sure about the husband right now, either. They are a team, and I don't want to break the set if I don't have to, in terms of friendship. Does that make any sense? It's going to have to, because I'm going to bed now, cause UGH. What a long day. I feel better after vomiting my angry words into cyberspace, though. Blogging has always been such a good processing tool for me.

If you want to learn more about Intractable Pain, here's a good, brief little primer, and here is a quote from it:

"Based on our clinical observations, within the chronic pain population, a subgroup has an intractable pain syndrome or disease. All have incurable, extremely painful conditions, as evidenced by failure of various interventions to control their pain, including surgery, nerve blocks, physical rehabilitation, and weak opioids. Patients describe their pain as constant, debilitating, and potent enough to interfere with sleep and sexual function. Many report suicidal thoughts for the sole purpose of stopping the pain, incessant crying spells, fatigue, depression, social isolation, restriction of mobility, and numerous bed- or couch-bound days."

**WARNING: FRANK DISCUSSION OF SEX AND KINKS TO FOLLOW!**

There's a website called bdsmtest.org where you can go to take a detailed questionnaire and receive results that tell you what percentage of different kind of kinks and fetishes you are. I've taken the test a few times, because I like to keep coming back to it as I explore more and learn more about what I like. This time around, my results came back thusly:

== Results from http://bdsmtest.org/ == 

100% Experimentalist 

98% Bondage receiver 

95% Submissive 

95% Exhibitionist 

94% Degradation receiver 

89% Masochist 

86% Brat 

73% Voyeur 

71% Primal (Prey) 

70% girl/boy 

67% Slave 

67% Non-monogamist 

52% Bondage giver 

51% Ageplayer 

44% Pet 

39% Switch 

35% Master/Mistress 

34% Sadist 

30% Owner 

29% Primal (Hunter) 

27% Vanilla 

21% Brat tamer 

19% Dominant 

14% Degradation giver 

11% Daddy/Mommy 

11% All-Rounder 

See my results online at http://bdsmtest.org/result.php?id=517711

Apparently my number 1 trait is that I like to try everything out. Nice! I'd say the results are pretty well accurate. As you get down past 50%, though, I'm really not into most of that stuff at all. Then again, I haven't really tried much of it first-hand, so I may like it a lot a lot. Never can tell until you try it.

That's all I wanted to share. There's another fun thing I found somewhere, which is a "map" of the different types of kinks and fetishes with color coded pins that you can stick on there to indicate if you've tried a certain thing, want to try, never will try ever, etc. It's really fun. I'll have to poke around and find it again and put the link in here with the bdsmtest. Happy flogging, all!

Something dark and hard but also viscous is rolling around inside me today. It started last night, on my walk. I started feeling dark and panicked and choked with grief and just… small and tender and tense. I keep bumping up against the hard edges of this thing no matter how I try to tiptoe around it. Depression? Anxiety? A combination of both? Could be PMS. Whatever it is, it makes me feel tacky and slightly soiled, completely exhausted, and way, way more pissed off than I am on a regular basis.

I'm angry, deeply angry, that I can't just get up and clean my house like I used to. Sure, it was hard back in the day (and now I know why), but it was doable. Now there are a hudred isolated little messes that I can't bring myself to corral. I'm too busy trying to drag my carcass through the day, make sure I take my meds, make sure I eat something, drink something, try not to vomit, futilely fight to stay awake… I'm weak as a kitten, and with less stamina. I hate being trapped in this body. Maybe that's it. Maybe that's the darkness I've run up against--I'm just finally fed up (again) with being trapped and shackled.

Yes, it happens to even the most cheerful and optimistic of us, "us" being those with otherwise invisible chronic illnesses. I don't have a remission to look forward to, just a further "managing" of symptoms that grow ever stronger and more varied as the months pass. I have to wonder, is this future I'm facing even worth all the effort I'm putting into it?

Perhaps I'm just over-exhausted. It was a busy, active weekend, as far as my energy levels are concerned. We spent hours in stores, looking at various things that we are shopping for, testing different mattresses and computer chairs… So exhausting, but also quite fun, because I was with Corey. But maybe my melancholy is simply a result of over-exerting myself during Corey's days off? That could very well be.

I spent some money yesterday, too, more than I usually do. I bought new components for a medic alert bracelet, a few other things… and I started feeling absolutely terrible and panicked later, sure that I'm a terrible person now because I bought frivolous things and I could have used the money to pay off medical bills… even though I took the thousand dollars I got from my late sister in law's life insurance and spent it exclusively on medical bills, and it seems that's all I spend money on these days… Like I'm no longer qualified to be a responsible adult who is good with money because I veered from absolutely necessary living-only expenses. Isn't that silly? I didn't use money appropriated for something else, and I can definitely make up for it in the next year. I guess I just don't feel like I could or should possibly… whatever. I don't even want to think about it anymore.

Whatever it is, I feel physically shitty (surprise surprise), I feel emotionally shitty, and I miss Bob with a fierce ache that won't be silenced. I contemplate getting up, doing the dishes, tidying the coffee table, even making an apple pie… and then I simply roll over and ignore my misguided ambitions. Perhaps later I'll dose up good with my meds, turn some energetic music on as loud as I can stand, and do the dishes and make that pie. Maybe a multi-berry apple pie? I dunno. I've been craving soda lately, too, mostly Coke. Gotta figure out how to get some of that here to the house, since I can't drive and I've got no vehicle… I wonder if I could simply order a 2 liter from a pizza place and get them to deliver just that to me? Hmmm… I'll have to make sure to hydrate alongside drinking soda, of course.

I'm sure my foul and exhausted mood will pass. I've got some exciting news that I'll write about then.

Note: I went and took a look at my "Quotes to keep me goin'" section, and it helped a remarkable lot. There's a reason I keep that page around… lol

Took little Bobbers in to get that respiratory infection he couldn't kick taken care of. The vet was curious and suspicious as to why a normally healthy cat couldn't kick a regular infection, so he ran a test, and sure enough… Bob had contracted feline leukemia. Corey and I made the decision to put him down then and there, mostly because any money we can spare goes to treating my diseases, and he was just gonna be sick and miserable until he died. That's not fair to him. So, as much as it sucked, they euthanized him right then, with me holding him in my arms.

It was awful. Not because it wasn't quick and humane, but because I lost another child within 4 1/2 months. Bob's brother and litter-mate, Cortes, died on February 6th, and Bob wandered the house and property for weeks, crying for his brother, his favorite playmate and closest friend. That made it really hard for me to deal with Cortes's death, not to mention the incredible suddenness of it. He was fine that morning, he ate the antifreeze, two hours later he had been euthanized and was dead. Same with Bob. I had this horrible premonition when we took him in, but I kept trying to shake it off and chalk it up to worry, you know? But I knew there was something seriously wrong. I just knew. I know my cats. He cuddled up to me the night before, but I regret having been out of town all day and spending our last day together away from him. We had one last night together, though. Then the appointment, and within half an hour… boom. That was it. It was devastating.

Fortunately, Corey had the day off and was with me, so after I relinquished Bob's tiny, limp body he took me home and watched an episode of Cosmos with me while I ate cake I had bought the day before from my favorite bakery. I felt some better afterward, but my grief has stayed with me, and at that time worry was also gnawing at the edge of my consciousness as well, because we had to take the other two cats to be tested for feline leukemia, which apparently transmits incredibly easily via saliva. Bob and the other cats weren't very close, so there was little to no grooming going on, but all of the cats do share the same food and water dishes, which could totally pass the disease on to the others. I was going crazy with worry and fear and grief, making sure that I spent time with each of my kitties… in case it was the last time. I was really worried that Juneaux would be sick and I would lose him, because we've been together for so long, and been through so much… he's been the thing that has kept me alive/kept me from attempting suicide several times, and he is the thing that kept me going during my deepest and most miserable times of depression while beginning and trying to deal with the abuse and PTSD in Idaho. He is as near and dear to my heart as my family, and it would destroy me to lose him before he dies of old age.

Corey reminded me that I'm going to lose Juneaux someday anyway, but I told him that there is a huge difference between losing him to old age and losing him to tragedy. It's the same for people. It always tears you apart, but it's just… different.

Took the cats in late yesterday morning, and all of the employees and doctors were very kind and respectful, since they knew I had lost Bob just two days ago. Our regular vet was in that day, so she came back in after testing the two cats and asked me if I wanted the good news, or… the good news? I wasn't sure I heard her right the first time, so I was kind of silly and stunned, asking the same question a few times, but yes-- both Juneaux and Fancy have a clean bill of health. I made sure to get them both vaccinated against feline leukemia right then and there, though we still don't have enough money to cover the other vaccinations. I think they'll be okay. The vet said that one thing that worked in their favor is that they are adults, so their immune system is fully developed and stronger than Bob's was. Also, they don't get into fights regularly like Bob did, so less chance of catching it from other cats. I think that applies to rabies and distemper, as well.

I'm feeling better, emotionally, after having that relief of good news, though I am still grieving hard over Bob. Not constantly… and it's a little easier this time because there are no other kitties wandering around looking for him and crying, and also, Bob used to be out and about for large portions of the day, evening, and sometimes night, so it really just feels like he's out somewhere and he'll come back later. He wasn't constantly underfoot, so I'm not constantly reminded. That helps. I don't know if it'll be counterproductive in the long term to healing, but it feels better right now, and that's kind of all that I care about.

Went to a farewell party for two friends who are moving across the country (stop moving away, mofos!), and it was nice. I enjoyed myself, though for a while it seemed like everyone was just kind of wandering around more or less bored… but V, one of the other women, she insisted that everyone start playing these games that she brought, and that totally made the tone of the party so much better. I fell asleep during the second game, which is kinda surprising because it was super loud and lively, but when I need a nap my body will just go for it, and I had been putting it off all afternoon because I'd been out and about and busy. The man of the moving couple didn't quite seem like himself, which was weird, but then I've never been around him when he's drunk more than one or two beers, so that could be it. It could also just be the stress and grief of moving, especially moving away from such good friends and such a tight community such as we have now. I hope they can find the same happiness where they go. I had a bag of gifts for them, and he texted me later and said that it was a very touching gift, and thank you immensely. That made my heart smile, even if it is heavy that they're leaving. I care about them a great deal, and they have made it clear that they really like Corey and I, so it really sucks that they're moving. It is hard to find a couple our age to hang out with that aren't ghetto assholes or druggies, or with an obviously unhealthy relationship dynamic, and that's just way more drama than we want to expose ourselves to. The moving couple had so many of the same interests, and they have a zero-drama-tolerance philosophy, like us.

So I'm grieving two things. Three, if you count the memory of Cortes's death that's now super fresh and in my face again. I ate some italian food that I probably shouldn't have on Friday when we went out to eat (I begged for Italian over sushi, and now I'm paying for it lol), and now my guts are in a huge uproar. Probably because I ate the leftovers last night when I returned. My intestines sound like water gurgling down a drain pipe. It's definitely a weird sensation. I just wish I could get off of the damn toilet! That's where I'm living today, apparently. I know that my sadness is a large amount of my gut problems. I always have gut problems when I'm stressed out by anything… and losing what to me was legitimately a child, albeit furry... I consider the cats to be like furry human toddlers. That's about the age and communication level we're at together. Also, being unable to carry or bear children of my own… they are truly my surrogate babies. And I've raised most of them from infancy, if not birth. Bob and Cortes were both babies I raised from birth, and Juneaux was only a few months old when I found him. I feel that I have a right to grieve as much as any mother grieves over her lost human child. So, that being said… I know why my guts are all jacked up. Death, loss, stress, grief, loss…. so much loss… I'm just so glad that Corey understands my grieving process and is there to back me up and comfort me when I need it. Love that man.

This, by the way, is what I'm currently listening to… It's so soothing and peaceful, I feel like I need to share it for those of you who haven't heard it before. It's one of my favorites to have on repeat--the whole record is, in fact.

I hope this soothes your soul as it does mine.

I've spent the last hour or so putting together (and editing the track info on every track for accuracy) a playlist for travel. I dislike radio stations because you have no control over what they play--and all three of the stations in Yuma suck--and they inevitably cut out into annoying static somewhere throughout the journey. When traveling with Corey, he always has his phone or usb with tons of good music, but he is rarely my driver because of work. My plan is to burn several cd's, however many it takes to fit this playlist on, and keep them in my little GPS bag so that I will have them whenever I am traveling, because I always take my GPS with me on out of town trips, even if it's the same destination that I've been to every month for the past year. Just in case. Detours, and all that. Plus it finds restaurants and other stuff! Best Christmas present ever. Seriously. It's been so practical and useful! And I don't have to finagle trying to borrow my grandparent's GPS any longer.

Putting together the playlist has me listening to songs that I haven't listened to in the better part of a year, thanks to my discovery of Pandora and Youtube playlists. I haven't relied on my iTunes library in quite some time, but it was nice to discover favorite songs again. The interesting thing is that I started going through my old Christian Rock/Praise collection again, and I felt things… it was just very interesting.

Listening to my old Alternative Christian Rock brought back all the warm fuzzies from my time in Idaho, which is when I began listening to it and collecting various tracks and artists. It's kinda weird to feel the rushing tingle of whatever it is I'm feeling, but I just feel wrapped up in a warm hug, almost, when I hear certain songs. I think a lot of the powerful effect they have on me is that they are heavily associated with a lot of the work I was doing to confront my abuse and to break free of my crippling depression, so I feel that same jolt of self-affirmation and power that comes with really trying to better myself and my circumstances. That whole time period of 2 or 3 years, however long it was… it was difficult beyond all reason at times (a lot of times), but I also made more breakthroughs and developed myself personally more than I ever had before in my life. I really think it was the time I spent in Idaho and the summer in LA that gave me the backbone and strength I needed to face life with multiple degenerative chronic illnesses. I learned my own strength and intelligence, my charisma and ability to love and be loved. It was necessary preparation for not just the next phase of my life, which included college and my work with The Healing Journey and getting married, but for the rest of my life. My time at Bible college, SOULS West, was more of a test of my stubborn resilience, and without SOULS I never would have gone to Idaho like I did. I got a job offer from the Conference up there as a Bible worker (which I thoroughly hated, as much as I hated canvassing, but I can't deny the skills I honed through both of those occupations), and thus I was connected to the Adventist community where I lived in a way that I could not and would not have achieved any other way.

While I no longer hold to the beliefs that I struggled to adhere to in those days, I still get that rush of pleasant feelings when I hear the music of those days. When I first felt it, I questioned a little whether it was perhaps dormant beliefs rearing their heads? But no. When I listened to the lyrics, though, I thought that, yeah, it must be nice to believe in your ultimate importance in the grand scheme of things, to believe that there is more to life than meets the eye… and I believe that there is, but not in the Christian scope of things. Not anymore. Maybe if I hadn't gotten bold enough to start examining the questions and thoughts that I'd always buried before, lost in the flurry of religious activity and constant motion, then I'd still be a member of the church in some way or another, even though I probably wouldn't make it to church super often these days. I admit to missing the camaraderie of a unified culture, the instant connection with other Adventists due to common belief. How could I not? It gets lonely here, with only cats for company. Yet I don't have the energy or will-power to overcome the pain and seek out other company, so maybe it's for the best. Talking to people is really exhausting.

I saw the geneticist at the end of last month, and my rheumatologist earlier this week. At the advice of the geneticist, I quit taking Vitamin C supplements because I didn't see any difference or help from them. She said to note carefully if I did feel any different upon quitting, and to start up again if I noticed a benefit to me. Well… they were doing more than I realized. A few days to a week after leaving off the C, my pain levels skyrocketed to what they had been back in the bad old days, before I had found proper help for my pain. Even with the strong medication I'd been given, I have been in agony for the past week. It's been awful, so awful. It's not just pain, it's a painful burning within the bones and concentrated in the joints, like they are filled with napalm and brimming over into my muscles… I've had to use my walker to creep around the house this whole week. Thankfully, my fatigue has increased with the pain so that I am sleeping just as much as before, if not more, which means that I am insensible to the pain consciously, though I definitely still feel it. I know, because sometimes I wake myself up with moans that sound remarkably like the lowing of a cow. Go figure. Having figured out that it was most likely the lack of extra Vitamin C that caused this dramatic change (because nothing else is different), I began supplementing again about two days ago. I'm noticing some little bit of change for the better; not much, but any relief is something to shout from the rooftops about. Yes, it was that bad. I have no idea how I managed to visit the rheumatologist all the way across the state in such a state. I am certain that I will continue to improve, though I can't say at what rate, and I feel that this experience may have knocked me down a step or two permanently. Alas. It was an important revelation, however. What about Vit. C prevents the burning in my bones and joints, the pain that pervades every single nerve fiber in a flaming gout of misery? I don't know, but I do know that I will never allow myself to run short, ever. This extra amount of pain is the reason for my increased presence on my blog, however. It's been that and reading-- distraction of the mind. Anything to not focus entirely on my agony.

Speaking of the rheum, it was a fairly productive appointment. I informed him of my ever increasing back pain, the pain due to the injury I gave myself during my last bout of narcoleptic-like sleep attacks. I fell asleep while standing at my dresser, taking my meds, and then I fell backwards completely prone and hit my head on the metal frame of the bed. There was nothing I could do to stop myself when I woke up halfway through the fall. I hurt my head, of course, but I also jammed my back somehow when I landed on the hard floor like a piece of bread butter-side-down. When I went to my chiropractor, he said that I had 3 or 4 vertebrae all jammed in together. I've seen him a few times since then, and had several massages, hoping to heal it like I did the subluxated ribs that I got in the hospital about a year ago. It's even the same place that hurts. :( This time it's the spine, primarily, though the ribs are also affected. Mer. Anyway, Dr. S ordered an X-ray, which we both agreed would be the best thing. He could have gone with an MRI, but I asked him to go the cheap route.

As an aside, I worked the numbers recently, just in my head, and I realized that I need a minimum of $400 a month to cover my very basic medical bills and prescriptions and travel costs. That is pretty discouraging to me, especially as I was denied disability again and the only way I can pay that is to beg my dads for money. I hate doing that… which is why I have this low-grade feeling of desperation bubbling through my core at all times, though it increases to a high boil whenever I have to pay any bills outside of that.

Anyway… I shared with Dr. S that I had been denied disability again, and he was incredulous. I told him what the letters said, and he responded with a slightly indignant, "But you have EDS, and you have it bad. I mean, you really have it bad!" That was both slightly discouraging and affirming. I keep hoping for a spontaneous recovery, but my better sense tells me that this won't be the case, especially as my diagnosis list on my rheumatology paperwork still lists Dysautonomia and Inflammatory Polyarthritis as confirmed diagnoses, in addition to all of the endocrine diseases and other fun stuff. I really am amazed at how stubborn I was in previous years, insisting on finishing Bible college despite severe illness of a then-unknown nature… and college classes… and work at the Healing Journey… I really did a lot before my body caved in and became more helpless than before. When I think about all I accomplished (especially all of the backpacking and camping and other achievements from my time in Idaho), I am very proud of myself. I really am a tough chick!

Dr. S ordered several blood tests in addition to the back X-ray which I was able to knock out that day before I went home, but I have to go in for an ultrasound of the hands when I'm in Tucson next. My next visit will include the ultrasounds, a visit to Dr. L, my geneticist, and Dr. R, my cardiologist. Oh hey, did I mention that I've started Physical Therapy? Yes, I have a therapist coming to my home to get me started on a home exercise program. I had to cancel the last appointment, because I was in the throes of my increased pain and fatigue, plus the previous appointment had come right at the threshold of my slipping into old pain-types, and we had definitely over-done it. I am finally recuperated from that visit, but it's been almost a week. She has only 3 more visits she's allowed to make (stupid insurance), but I'm doing pretty well on my own. She just wants to show me what I can progress to, in time, but we are starting very slow and small for now. It does feel good to be working my muscles again, beyond my daily evening walk. Takes me back to my Acrosports days, in a way. I know that by a lot of people's standards these exercises would hardly be "pushing it", but for me and where my body is right now, it is definitely pushing it. It's a good opportunity for me to continue learning how to determine my limits and quit when I need to… despite my urge to keep going. Modified crunches have nothing to do with my worth, but it's hard to believe that thought sometimes, especially when I remember what I used to accomplish. I've fallen pretty far… It's not my fault, though. These are just the consequences of my faulty genes, and I'm making the best of it.

Really, considering how physically miserable I am most of the time, life is actually pretty good. My marriage is doing fine. In fact, things feel better lately than they have for a long time. In another post, I'll talk about the Masquerade Party that we went to, and all the fun stuff connected to it. It's time I ate a little something, took my meds, and surrendered to sleep yet again. Good night, all. (Or morning, if that's where  you're at.)

Do you ever just get really desperate feeling? Is it just me? I mean, not the kind of desperate where you think that you don't want to live anymore or the world would be better off without you, but the kind of desperate where you think, How am I going to keep  making this work? Where am I gonna get the money for these bills that never stop coming?!

I know I'm supposed to ask Bomb Dad for $ to pay the bills-- that's what he wants me to do, that's what he's agreed to, even though he has absolutely no obligation to, especially now that he and Mom are divorced… but he's one of the best people I know. Seriously. And that's why I hate hate hate asking him for money… again. And again. And again and again and again… I asked for several hundred last time, just a few weeks ago… and now I'm already up against a wall and need more. How can this be?! I don't understand how it goes so quick… well, maybe I do. I need at least $300 a month just to get to my pain doctor and back, and to afford the meds, and that's a very conservative estimate.

I'm just… being driven crazy with pain, watching my dwindling supplies of medication... It always freaks me out to be running out when I get close to appointment time, even though I'm supposed to be out in 30 days… I just hate watching it happen. Makes me jumpy. Just a holdover from the years when I couldn't get consistent or adequate help for my pain, and I had to make everything last as long as possible while trying to either get or stay semi-functional.

My ride for the munch is here. More later. I'm hoping that socializing with my friends will help alleviate pain and bring my mood up. Crossed fingers!

This was a little difficult to begin typing… not because I'm working up to a particularly emotional topic or anything, but because of THIS:

 

Yes, that's right. Fancy climbed up onto my keyboard to take a happy little nap and make me pet her. I moved her aside a little to being typing, but she just hung out in between the laptop and I, purring up a storm and demanding with body language to be scratched. And really… that's freakin' adorable, no? I am still sad at the events that brought her to us--the death of Cortes and my subsequent search for a new kitty--but she has truly been a bright spot in these past few months. Even now, as my legs are aching almost beyond tolerance, I have a smile on my face and I'm still laughing a bit at her antics.

Fancy loves Corey. When she hears his truck rumble into the driveway after work, she stops whatever she's doing (yes, even eating! I know, I know… shocker.) and runs to the door to meet him. When he walks in the door she starts purring and weaving around him for a pet, but he usually ignores her then, and so she runs outside to play for a bit. She is like the other cats we've had, in terms of her meows. It's pretty faint, kind of rusty sounding, and not loud. At all. Kind of like Juneaux, how he opens his mouth to meow and only air comes out with a bit of a squeak around the edges, but she actually comes up with a sound. It's just not loud… unlike her purr. You can hear her all the way across the house. Honest.

She's getting better at getting along with the other cats. It seems like she's been here so much longer, but it's only been a few months. We got her at the end of February/beginning of March, so… three and a half months? Ish? She follows me everywhere, like Cortes did and like Bob still does, and she will sleep near me whenever possible. If there are other cats already sleeping on or near me, she'll find the closest possible place that she can tolerate, which is shrinking rapidly throughout the months. She is willing to put herself in much closer proximity than she used to.

Anyway, I could keep going about Fancy, but I really need to get up and get ready for the munch tonight. It's at a local restaurant that has survived for years, which is uncommon in our community. I'm feeling particularly awful today, so it's gonna take me a while… but I know that Fancy will be by my side or under my feet every minute of it. Heh. I love that girl.

Beware-- this is the post about sex and kink that I warned you about in the previous post. If this subject makes you uncomfortable, skip this post. Seriously.

I'm part of the local kink community, the BDSM "scene", if you will. We have regularly scheduled get-togethers throughout the month, usually 3. One is a dinner at a restaurant, called a "munch". Munches vary from place to place, but basically it's a gathering of the kink community to hang out in a non-kinky ("vanilla") place. Another night, we have a "slosh", which is a gathering to hang out and talk in a bar or place that sells liquor. It's like a munch, but with booze. The third thing we do every month (with a few exceptions throughout the year for various reasons, always good) is get together at the house of whichever member(s) is/are hosting for a play party. What takes place at a play party is as variable as the composition of the group. The purpose of a play party is to allow kinksters to engage in their common activity, BDSM, in whatever manner they choose. Also, everyone brings some sort of food dish to contribute to the general potluck, so that's important. Like, really important. (Beyond being sarcastic, it actually is important, because coming down from an intense endorphin and adrenaline high after a scene can be difficult, and food goes a long way toward stabilizing you and your blood sugar and keeping you from crashing and burning. There are other things that comprise "aftercare", but food and water are important ones.)

Last time I attended a play party, I asked one of my guy friends there if he would flog me. His wife, kittymeow, was fine with it, as was my husband, so he put me in restraining cuffs on ankles and wrists and chained those to the St. Andrew's Cross, my face inward. This particular one is a double cross that's hinged at the top, and both sides come down at a bit of an angle so it makes a triangle, two sides of it being X's and the bottom a wide wooden base. He started with a smaller flogger, then worked his way up to a large, heavy one with lots of falls, or leather strands. Then he worked his way back down to the light ones, finishing up with a quick session of a whip-- my first time with a whip, and I was afraid that it would hurt me more than I wanted, but hawkeye has fantastic control, and he kept the sting minimal. He finished the session with knife play, after asking me if it was okay, of course. (Knife play is, btw, amazing and incredible and super yummy. Could just be his technique? Whatever. Amazeballs.) He also asked me before he used the whip, because that's the number one fundamental rule for BDSM of any kind-- Risk Aware Consensual Kink, or, put another way, Safe, Sane, Consensual. There is a lot of continual communication during any kind of play, whether it be impact play, like being flogged or whipped, or sensation play, like the knife, because the top (or "Dominant") needs to know where the bottom (or "submissive") is at with pain levels, tolerance, sub space, other bodily needs, etc. If you're feeling uncomfortable and want to stop, all you have to do is simply say so and it's over, just like that. No questions asked, no fingers pointed or derogatory comments aimed in your direction. A standard practice before starting a scene is to agree on a "safeword", which is a word or a phrase that means "I need to stop right now, this very instant!" It's important to have that in case you aren't thinking straight, or if your play involves a lot of "no's" (that don't actually mean "no", of course), or whatever might come up. Maybe you suddenly have the runs, or your trick hip just gave out. Who knows? At any rate, if the people you're playing/scening with are worth their salt at all, the option to quit at a moment's notice is always available with no repercussions. The top can use the safeword too, if they want, though usually it's the one enduring the pain that uses it.

Although I've not been a part of the local kink community (or any kink community) for a terribly long time (less than a year), I've come to really love and appreciate every single member. They all bring something unique to the table that makes up the varied composition of our group, and our group is fantastic. We have so many crazy talented people. Sadly, three of our number are moving away, one to be with her Dom, so that's a happy thing, but the other two, a couple, are moving because he received a new military assignment. They're engaged, so where he goes, she goes, which is killer for all of us, because they are pillars in this community, but especially for her girlfriend, kittymeow... I'm hoping that I might be able to step in and fill some of the gap that's left for kittymeow, the girlfriend/wife. We relate especially well because she's a chronic pain sufferer as well, so we understand each other on a level that others never will. The coming party has been planned for some time, and it's going to be a "Goodbye" party for our three moving friends. We haven't had a theme before, but since this is a special party Devil's Advocate, the fiancée, chose to theme it as a Masquerade Party! They've also named it Ragnarok, which I find particularly amusing.

Corey comes to parties with me when he can, but most of the time they fall on a day that he's working. Since his days off got shifted away from Saturday, he's not free to come. This time, though, he'll swing by after work, at least to pick me up, and so he can say goodbye. It's supposed to end at 1 a.m., but I am not alone in suspecting that it will run longer than that. Funny story: when Devil's Advocate saw the Robot's mustache, she made Perfect Devil grow one as well, which was fine because he was totally inspired by his 'stache anyway! Too funny ^_^ Anyway, I began running into the problem while soloing at parties that I wasn't sure what was appropriate behavior for me and what wasn't. I wanted to play more, but I didn't want to violate Corey's trust in me or commit a relationship infraction, so when I came home from the last party we sat down and devised a set of rules for when he is not at a party with me. The project I'm working on is to transcribe them to a cute, portable little piece of card stock or a card, or something, something I can take with me and refer to with ease this weekend. So far they are just scribbled down on a sheet of notebook paper, but I want to share them here as well, to give an idea of the etiquette the Robot expects me to uphold when he is not around. The rules go as such, without any particular order in regards to importance:

1. All rules apply to both parties unless stated otherwise.
2. No hands-on or oral genital stimulation is allowed in Corey's absence, giving or receiving.
3. If prior permission is given to allow stimulation, I must be wearing underwear during the act(s).
4. No penetration of any kind by others, whether toy or body part.
5. I may not orgasm by the efforts of anyone else but Corey and myself.
6. No kissing males, including MtF trans, but females are fine for mouth kissing.
7. No mouth-to-skin contact (i.e. nibbling, biting, etc.) on any location that can be covered by a mask or a g-string. This includes face, genitals, and anus.
8. Breasts are fair game at all times.

I picked up a gorgeous glass horse tail anal plug while in Wisconsin. One of the conference speakers discussed sex and disabilities, and at the end she passed out her business cards. She works at an "erotic boutique" that's feminist and education based and it sounded amazing, so several of us ladies went over to check it out, and we all came away with stuff we were really excited about. I couldn't put the tail down once I'd asked to see it out from under the glass counter, and I knew I would really regret leaving without it so I bought it! I got several other things, which I may or may not discuss in another post, but on top of all that I also picked up a gorgeous plus size teal satin and black lace dress/teddy thing. (Technically my mom did, but it was for me, so…) I had been freaking out over what to wear to the Ragnarok Masquerade, but suddenly I had an answer! I also went to the Fox River Mall and got a very gorgeous and sparkly purple half-mask to wear with it all, et voila! All set :) Here's a few pics of the tail that my friend took when I tried everything on the other day. (If you click the links in this paragraph, it'll take you to the website of the toy store, and the specific items that I bought from them. I think that in another, later post, I'm going to compile a wish-list from the store, Tool Shed. Everything I saw there was really quality, and because I support the store's mission, I'd like to buy from there to support them financially.)

 

Well folks, I'm all tuckered out. I'm not so used to typing anymore. In fact--little secret, here--I've already fallen asleep at least twice while finishing up that last paragraph! So good night to all, and may you have wonderfully saucy dreams.

I'm going to be posting two posts today, but the other one will be kink-related, so be aware. Or beware. However you feel about that particular expression of sexuality.

I've been feeling… off… lately. I think since the Arthritis Introspective G8 Conference in Milwaukee two weeks-ish ago. Don't get me wrong, it was a great time and I made some fantastic business/advocacy connections, not to mention at least one solid friendship which I suspect will last a lifetime. I didn't learn much that was new to me, which surprised me, honestly. I didn't realize how much I already know about rheumatological diseases in general, and living with them in specific. I impressed myself, actually. lol. However, it was difficult in the sense that there were a lot of people there who do all this amazing volunteer/advocacy/professional work to support the arthritis community and raise awareness and change legislature to benefit the citizens of the arthritis community, and it left me feeling basically like a big, fat loser.

I already have a difficult time with the reality of having to leave my work at the Healing Journey, which  is my baby, having nurtured it from the ground up and having actively been a part of almost every step of its growth until a year and some change ago… whenever it was I stopped working. Two years? Yeah, I think so. Time flies, really, and I forget when I stopped doing this or that. They aren't exactly milestones that I wish to remember and celebrate. Although… maybe I ought to do just that? Maybe I should pinpoint the milestones of my disease(s) progression and find some way to look at them in an optimistic light, or at least not be totally broken over them. Have a tea party with friends for every "anniversary", or do something symbolic and meaningful to honor the tough decisions I've had to make in the past. I like that idea. I personally feel that symbols and representations are immensely powerful and can be crazy healing if used in earnestness. It goes along with my slow research and interest in paganism/nature-based "religion". I'll have to think on that and see what comes to mind.

Speaking of symbols and representations, did you notice that I got my nose pierced?! Oh, and my lobes got another hole in them as well. This ties into my "funk" in a sense, because one of my greatest gripes about my time as a super Christian is that I had to so severely curtail my personality and present an image that wasn't really me, and to me that hearkens right back to the extremely abusive and dysfunctional environments in which I was raised. I was actively told to keep the true nature of our home life a secret from the authority figures in my life, such as the school teacher at the small church school I attended from first to eighth grade. At home as well, I learned early to cultivate or feign an interest in whatever my step-dad was into, to avoid as much pain as possible and garner as much affection as he was willing to dole out. So that means that the Raiders became my football team, I loved video games and Final Fantasy VII, I watched WWF wrestling and had a favorite wrestler, though I deviated there by favoring Goldberg instead of Sting. It was a survival mechanism, in childhood as well as in adulthood. I needed an identity, acceptance, because I had so long stifled my own identity and could not accept myself. How could I? I'd been told in various ways, most non-verbal, that who I was naturally was unacceptable. Such is the nature of abuse, of the power and control wielded by the strong, abusive person or people. They efface the identity of the weaker, tell them who and what to be, becoming ever more powerful with each act of compliance. It's awful.

My teenage years, the high school years, were a reprieve. I dressed how I wanted, collected and hoarded the things I found interesting, listened to "my" music… but it left me isolated and ostracized, for the most part. I always had a few friends, but most people stayed away from me. Apparently they were afraid or intimidated because I seemed so self-confident and assured, but it was a complete facade. I did enjoy those years of relative freedom, though. It was during that time that I met my husband and we fell in love. He became the person who knew me the best; my true self. Every gory detail was open to his eyes and ears… eventually. And he accepted me. That laid the very first foundation for healing, though it was many years before any significant healing would take place.

Now, I'm recovering from my years in bible college and as a worker for my denomination in a small, backwoods area of Idaho that was more conservative than anything I'd ever seen before. I know that I was probably considered very liberal, though I was considered extremely conservative where I came from. It's funny how that superficial identity can shift from place to place, depending on the perceptions of those around you. But I'm still scared to fully express myself, because of social media and the circles I'm still friends with. I want to be "me", but I don't want to drive away or alienate my old friends whose views I understand but don't necessarily agree with. And more than anything I don't want to be evangelized. I'm not "lost". In fact, although I've felt so "blah" since the conference--something I later realized to be the product of travel exhaustion and PMS--I still feel the strength and confidence that I possess in myself keeping me afloat. I have times where I doubt myself, get down on myself, even hate myself still. It happens from time to time. But one of the things that I hated most while trying to be a Christian was having to give away my power and give the credit for my strength and my accomplishments to god. You know what I mean-- you are never actually the one who does anything, because it's god engineering the circumstances and giving you strength and telling you what to say, right? It reminds me of playing with dolls or figurines/action figures. I said what I was supposed to, but I was constantly bewildered by the fact that I was the one who worked hard and poured out my effort and strength, yet I was supposed to ignore my own willpower (because relying on your own willpower is a sin, I think) and demurely say "praise god!". It just didn't sit right with me. Again, probably because of the lifetime of abuse and domination where my power was taken away again and again and again, my accomplishments diminished and ignored.

I get that a lot of my beef with my denominations beliefs stem from my sensitivity to abusive tactics. Some might say that I'm overreacting and interpreting abuse and dysfunction where there is none, but I believe that, because of my sensitivity, I see what others may not be aware of. They may be fine with ignoring their part in things and giving all the credit to god, but I'm not. Human beings are remarkable, and capable of so much. I think that it does a disservice to humanity and our potential when our strength, our creativity, our amazing power to endure the unthinkable and come out the other side hopeful and gracious, all that is attributed to the subtle workings of a divine being who is way out of our league when it comes to that kind of stuff. What about the incredible contributions of atheists or other religions to humanity? I've been told that it's god working through them without their knowledge, but isn't that kind of invasive? If a deity is going to pop into my head and use me as a vehicle for his/her/their accomplishments, I'd kinda like to know about it. It feels like a conspiracy theory for Big Brother or something.

Anywayyyyy… moving on from that soapbox… you may have guessed this by now, but my piercings are symbolic for me of trying to be the best version of myself that I can be; my true, honest self. It's an "I've wanted this for a really long time, dammit, and I'm not going to let my fear of rejection or criticism stop me from expressing myself anymore!" statement. And you know what? I love my nose ring so much. I think it looks really attractive, and I like who I see in the mirror a little more now that I have it. I feel a little more badass, more ready to take on whatever comes to me, a little more bold and creative. I feel unstoppable, really. All that from a couple little circlets of metal. Go figure.

This feeling of uncertainty, of "blah-ness" that's been haunting me for the past five or so days has also led me to take a step back and evaluate my life. I don't want to waste away on the couch for the rest of my life, but I do recognize that I'm in a transitional phase right now. It won't always be like this, but right now I'm trying to find diagnoses and learn to manage what I already know about. It's a lot of work and time and energy, and I don't have much left over for anything else except maintaining my marriage and a few select friendships. In fact, I really need people to be proactive if they want to interact with me at this point. I'm exhausted all of the time, and I am sleeping a good deal of the 24-hour day. I spend a lot of time with my cats and snakes, too, when I'm awake. Mostly because I can do that while I'm doing other stuff, but mostly mostly because my cats follow me around and sleep next to me and take my spot if I get up for something.

I have a few bits of news that's developed recently, as well. Firstly, I was denied disability again. Everyone who knows me and has heard is more or less incensed, because they believe that I qualify without reservation, and moreover that it would be a huge benefit for me and my husband. I feel the same way. I'm really ticked off, because they claim that they carefully reviewed my records, yet the list of diseases I have is not only incomplete but one of them is totally wrong!! Nowhere in my medical records does it state that I have hyperthyroidism. I struggle with hypothyroidism, something that's given me much grief and physical suffering through the years. Uncontrolled, it is debilitating in its own right. Corey and I both agree that it's time to seek a lawyer's help. I also received a private message from an acquaintance who is a disability lawyer in a different state, and she said as much before I even discussed it with her in depth. I felt quite affirmed in kind of a silly way while Corey and I were discussing the disability ruling and our next move. I suggested that maybe I am just "being a pansy" and I'm not as sick as I think I am? Maybe I just need to suck it up and try harder? Corey looked me in the face and said, "No. You are not a wimp or a pansy. You are sick, and they're wrong." I know that if I were simply being lazy, he would call me out on it. He agrees and says that he'd tell me to go do something. lol. It was nice, though, knowing that my hubby not only agrees with me, but he understands the severity of my issues and believes that I am doing my absolute best to be "well" (or just "better") and productive. It warmed my heart.

In other news, I began physical therapy today! The great part is that she comes to my house once a week, so I don't have to arrange transportation for that as well. It's hard enough trying to find rides for all of my dr's appointments, much less the ones in other cities or states! Seriously. That is the biggest thorn in my side besides the Intractable Pain. (The pain which the good ol' disability folks didn't list among my diseases or take into consideration, apparently.) I have a chart of exercises to get through, and the repetitions are low for now. We are starting small and working up, not only because of my hypermobility, but also because of my extreme fatigue. At first, my goal is to do all of the exercises within two days. She showed me sitting variations for almost all of the 9 exercise moves, so that's a really good thing for me. Did you know that there's a sitting variation for crunches?! Yeah. I'm super freakin' thrilled, especially because I mentioned that doing sit-ups or crunches on the ground makes my hips pop during every rep and it's quite painful. I had to deal with that through years and years of high school P.E. classes, and I'd like to avoid it if at all possible… which it is!!! Joy to the world ^_^

That's about all for now. I feel that I've rambled quite enough for one night, and I still have that "other" post to do. I have a project that I'd like to get done this evening as well, so maybe I'll take a typing break and work on that for a bit. I plan to get on the internet more frequently in the near future. I have the desire, if not necessarily the drive for it. I was feeling guilty for a while, but then I just realized that this is the phase I'm in right now. I don't need the internet as a constant distraction from my raging pain, because it's being managed fairly well, and I have other things that take up the increasingly minimal hours that I'm awake. In all truthfulness, too, being online exhausts me. It's just tiring, and I'm already so tired that I don't feel like handling that extra tiredness as well. That's usually why I avoid it these days. But I'm starting to feel a hankering to participate again, to come out of my isolation a bit, and the internet is the way to do that. So I may be posting more often, lurking on Facebook a bit more, and hanging out on the kinky message boards I read more frequently. Just as I'm launching PT to strengthen my body, I think that I could use some social strengthening as well. I'll give it a go, anyway.
Toodle-oo!

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

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

…now you don't.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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