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!

…now you don't.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I feel like I've been gone forever from the good ol' blog. It's only been 20 days, but that can be an eternity. I would explain everything that has gone down, but in the words of Inigo Montoya, "No, is too much. Let me sum up."

First of all, the appointment at the University was a rousing success! The doctor's bedside manner was professional but kind, and he was very thorough. I came away with several new diagnoses and a heart singing with vindication that it was not "just fibromyalgia" this whole time. I'm also dealing with Hypermobility Syndrome, Undifferentiated Connective Tissue Disease, and--get this-- Inflammatory Polyarthritis. Yep, that's right. I'm basically an arthritic old woman lol. So right now it's all still pretty vague. We don't have specifics as to what kind of arthritis or connective tissue disease I have, but they took, like, 10 vials of blood, I've gotten x-rays and ultrasounds of my hands, and I go back in February to learn more about what ails me. The Hypermobility makes sense, too. Even if it's not a part of EDS, it can be a thing unto itself and it still causes insane amounts of pain whether it's a standalone or part of the Syndrome. That's where my Intractable Pain comes from, and then I have the arthritic and connective disease pain exacerbating it. No wonder I'm in hell all of the time, why I require overly strong doses of pain medication to keep my body from crashing and burning and putting me in the hospital.

Let's see, what else? Ummm… yeah, I've pretty much spent a lot of this month in bed, sleeping. My friend took me to Tucson and we made a fun trip out of it, going to spend the night with another friend of mine in Sierra Vista, and that was cool. Mostly I've just been trying to survive, buying or making Christmas gifts where I could because I love love love giving people gifts.

Funny, it felt like I had so much stored up and ready to be poured out, but I guess that's my big news. I'm still having a hard time processing the implications of new diagnoses and such, and that's made it rough. In addition to that, Corey's youngest sister passed away a few weeks ago, and that's been really hard. The week that we were making arrangements was the most difficult of all, I think… and I've definitely been taking it harder than Corey. That's fairly normal though, I suppose, at least for us. He doesn't really go in for the whole "displays of emotion" thing, whereas I can't help it. We inherited her young snake (because her dad had no idea how to deal with a snake and didn't want to), and the first time we went to feed her it was a "pinkie", or a baby mouse that has no fur to speak of and hasn't opened its eyes yet. They're small, and we weren't sure how big of a mouse Lemon, the snake, could handle. I was very upset seeing the little guy being sacrificed like that-- it's always harder for me the younger they are-- and when Lemon attacked it wrong and tried to eat it while it was still alive (she's still young and not too good at this yet), I lost it and fled to the bedroom, sobbing. Corey came in a bit later and made sure I was alright, but truthfully he found it a bit amusing. He has some dark humor like that.

So it's kinda been a hell of a month. In addition to all of that, I had some not-very-good pain killers to try out this month, which is what led to the "surviving" part. The spending most of my time sleeping thing is, apparently, an automatic response to grief and excessive stress. However, Corey has been more affectionate and interested in our relationship. I think that the conversations we had made a difference for him, and I know that it got me thinking more deeply. I think the sudden loss has made him more attentive toward me as well, because he is sensitive toward my moods and making sure that I don't fall too far. I love that man, I really do.

Tomorrow is Christmas, and it'll be the first one in my life that I can recall not spending with my mom and siblings. Corey doesn't celebrate holidays, and I'm a bit of a grinch myself, but there are some things about certain holidays that I like and Christmas holds a few favorites. I like lights and Christmas trees and gifts and family. I wasn't able to make any of that happen this year, though, because I'm just too sick, exhausted, and whatever to put forth the effort. I will be having dinner with my grandparents tomorrow afternoon, so that's something. I'm pretty sure they have a gift for me, and I have something for them that I made, but they're really not putting effort into it either because all of the grandkids are gone or grown… kinda makes me sad. But my hopes are that by next Christmas I'll have the vigor to make some effort toward the things that I love, maybe even be able to travel again and see my folks. I really hope so. I hate living all the way across the country from them.

Today wasn't too bad, though. I got a massage, slept, ate cake, and watched How I Met Your Mother all wrapped up in my electric blanket on the couch. Not bad at all, I'd say, though much different than I've spent my Christmas Eve's in the past. I'm hoping to "make" Corey take me out to see some of the impressive Christmas lights tonight after he gets home from work. That'd be neat.

Today is the 8th anniversary of The Accident. Back in 2006 I was attending a small Christian boarding academy (high school) about 4 hours away from home. There were several of us kids from Yuma there, so the parents had worked out a carpooling system for the occasions that we came home such as holidays or Home Leaves. This particular event was a home leave, and several of us piled into the Astrovan owned by a good friend of my family, whose son and granddaughter both went to school with me. The other Yuma kid declined to go with us because he had some other plans, but a Korean foreign exchange student that was good friends with the son and on the same Acro team as the son and I joined us for the trip. He was excited, because he wanted to see more of America before he graduated and went home at the end of that school year. He couldn't stay and tour afterwards, because apparently Korea has a law that mandates all young men to do a certain amount of military service once they are done with basic schooling, and I'm also pretty sure that he didn't have that kind of money.

The stretch between Phoenix and Yuma is pretty barren and empty, but there is a town almost exactly halfway between the two, and we stopped there for snacks, bathroom break, gas, and Fred, the dad, put air in the van's tires because he thought they looked a little low. (There are SO many details that I'm omitting, but I don't feel like typing that much, and it would be a small pamphlet at least if I did.) It was not too far underway from that town that the back left tire blew out, and the van swerved then rolled and flipped several times. I was hit in the head with something flying around the interior. (I think it was the old school portable tv, the heavy ones? Or maybe it was some sort of tack because Fred hadn't emptied out the van from the last time he had been at the stables to tend their horses. I don't know; I'll never know.) The blow to the head caused me to lose consciousness and go blind for a period of time I estimate to be about half an hour, 45 minutes maybe? I was very devastated because I thought I couldn't read anymore. (A famous line/joke from the experience is when I was led to Fred after being freed from the van and I told him I was blind. I was crying about how I wouldn't be able to read anymore, and Fred comforted me by saying that he would read to me. My response was to wail, "You don't understand-- I really like to read!!" LOL)

As far as injuries go, I was blind and had a severe concussion, was having an asthma attack, had an internally bleeding mushy spot on my skull from being hit, whiplash, of course, and there was some injury to my ribs as well. Oh, and I cracked a toe. The granddaughter, A, had unbuckled her seatbelt to lean forward and grab something just as the crash happened, so when the glass window from the sliding door popped out she was thrown through the opening during one of the flips or rolls and then the van rolled over top of her. She was Life Flighted out of there (as as I) and ended up in ICU for a week with a lacerated spleen and a fractured pelvis, along with the requisite whiplash and concussion.

The two guys, J and the Korean S, had bad whiplash and S had a bloody nose. I'm not sure if they had any other injuries, but they didn't say so, and they still went to play in the tackle football game a day or two later that they had been planning on. They are both big guys-- tall, solid, lots of muscle, and sturdy-- so they were an important part of our school's team and they didn't want to let the team down by not playing. *smh* Men.

Fred threw off his lap belt when the van began to swerve and leapt into the space between front seats to help control the van, so he was unbuckled and tossed like a salad as we flipped to and fro. He also ended up in ICU for a week, but they didn't fly him out because he looked okay until after A and I flew away. He collapsed and they ambulanced him to the Phoenix hospital as fast as they could, and all I remember now of his injuries is that his spleen exploded into a bunch of pieces. SO not good. He went into emergency surgery, obviously.

When I came to after the crash itself, I was blind (blackness, everything blackness with purple lightning bolts shooting through and across in every direction) and disoriented and sooooo tired and sleepy. I tried to unbuckle my seatbelt for a minute or two but it was too hard and I couldn't do it, so I began to drift off to sleep. Turns out I was the only one in the van because A had been thrown from the vehicle, J and S jumped out as soon as the van stopped, and Fred jumped out to help as well. We landed on our side, with the driver's door on the ground, and the window beside me had broken but the blanket I was using as a pillow while I napped kept the broken glass from reaching my face or neck.

The van was steaming as it was resting and J thought it was smoke, that maybe the van was going to explode and I was still in it. Everything smelled like gas. I used to love the smell of gasoline, now I'm not so fond of it. J came in and kept me awake with talk, which annoyed me to an incredible degree, while he cut me out of my seat belts. What had happened is that Fred's lap belt got tangled up in my shoulder belt while everything was being shaken up, and I couldn't see to undo it and J felt that it would take too long. The van was about to explode, remember?! Because of my weakened state (concussion, asthma attack, shock, etc.) I was unable to lift myself out the hole above me that had been the sliding door's window, so J kicked out the windshield and took me out that way. I jokingly flutter my lashes at him and swooningly croon, "My hero!" when that story is told around him, hehehe.

There are a ton of funny and touching stories that go with all of this, and maybe I'll share a story every day or every other day this week in honor of Life and Second Chances. For right now, I'll sum up by saying that even though there were some scares and lots of camping out in the ICU waiting room, we all survived that harrowing experience with very little in the way of long term damage. It's practically unheard of! We were and are very fortunate, and that is why Fred and I like to Celebrate Life on our Anniversary, though the others (J and A) don't see the point or enjoyment of it and choose not to celebrate it. J feels very guilty because he was driving, but it could have happened to anyone. Really. A lives far away, and S is back in Korea, so… Actually, I think they are both in Korea, come to think of it! A married a military man, so…

Anyway, if nothing else at all I learned the value of every split second. We carry on as though life is assured, and rightly so I think or else we would be paralyzed by the thought of impending mortality, never enjoying a thing or being productive, but it is the realization that life and consciousness can be taken away in the space between two breaths that really gives context to the value and delicacy of life itself. For instance, yesterday was David S's birthday. My adopted dad who died of cancer last year. Yeah. The birthday of a dead man whom I loved dearly, and then the next day a Celebration of Life, another "birthday", if you will" with other people that I love dearly, who are all still here and kickin'. It's just so… puzzling. There doesn't seem to be much rhyme or reason to it, except the certainty that

Life will end. Yours, mine, your fish, the Pope, and certainly that pretty caterpillar you saw last week… our lives will inevitably cease at some point. Mine could have stopped on October 25th, 2006, but it didn't, and I'm very grateful for that. My essence, the core of who I am, my conscious soul or whatever, that could be snuffed out by any number of things even while I type this blog post. But I'm still here, so I'm gonna enjoy it and try to be a good person and make life as good as I can for those around me who are still going as well. It's as much of a goal as anything else, right?

Happy Anniversary, Life!

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. :)

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

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

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

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

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

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

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

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

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

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

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

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

They say a picture is worth a thousand words, so I thought that instead of blowing out my breath, I'd throw a few (hundred) pictures at you instead. A collage or a scrapbook of sorts chronicling the state of affairs. It was kind of fun collecting these pictures. I was on Pinterest and I just got this urge to start saving them because I wanted to do this, so… here I am! All of the photos can be found on the Pinterest board Character Inspiration by h. grace, so photo attributions can be found there. (Except for the food and scenery photos. Those I've picked up through the years and have NO idea where I got them. Sorry!) I am not going to bother with each and every picture.

CAUTION: There are a few NSFW (Not Safe For Work, read: slightly pornographic or containing profanity) photos in here, because this is my blog and these are my deepest thoughts, and, well, they run a bit dark and sexy. Sorry. You've been warned. There's only a sprinkling, though. Like, 8, in the midst of the, what, 100 others? And I made sure to keep it cleaner than I might otherwise, because I know there's some of you reading this who are more sensitive to that kind of thing than others (i.e. no penises, no genitalia, and no full on boobage. I gotcha. No worries ^_^).

How things are between me and Drogo right now

 

 

How (who) I (still) am inside

  

 

 

How Drogo is

How life feels right now (for the most part)

The things I yearn for and miss the most