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!

Yes, I've been quite the absentee. What a difference from the days of old when I was pouring my heart out practically on a daily basis. That was back when I had so much to figure out, so many feelings swirling and whirling and trying to feel my way through the hard stuff of bellying right up to my trauma and trying to walk past with my head held high. There were all these relationships with other people to navigate and they didn't fit any normal sort of blueprint that I'd ever encountered. They were all their own special type of dysfunctional that I'd not encountered before. I'm used to full blown abusive, not such passive aggressive stuff. But anyway, I digress.

The past few months have been hard for me, really hard, and I'm not just talking physical symptoms. (Those have sucked too, though; seems that the pain does nothing but increase month by month and I don't understand that at all.) I've had tons of doctor's appointments and tests and I'm burning through money like crazy just trying to get to the appointments and pay the current copays, not even catching up on back payments. That is a discouraging thing to have hanging over your head, especially when you know just how many zeroes are tacked onto the end of that storm cloud. If it weren't for my dad, I'd be completely out of the game by now-- no tests, no diagnoses, no traveling, no nothing. He's a lifesaver. In addition to that, several others have given me a few hundred total this past week and that makes such a huge difference. It makes me think that paying all those bills off might even be possible!

So to the new news that had me so down… I've got an official dx as of a week and a half, two weeks ago, and it's that I'm dealing with EDS for sure. The nice geneticist woman put me on the border between Classic and Type 3 "Hypermobile", but really it's just a matter of clinical fiddling one way or the other, so I guess I'm Classic with hypermobility? Yeah, either way it's a shitty thing to have to deal with. I don't doubt that the rheumatologist's decree of arthritis is wrong, either, because I'm feeling it more and more as time wears on. The weather affects me so drastically now in my joints that I could claim to be elderly if I weren't so young and hot on the outside. Heh. But oh, speaking of young and hot, I'm losing weight! It's visible and noticeable, not only to myself but to others. I'm so relieved and gratified to see that the efforts that I'm able to make are finally paying off.

The Ehlers Danlos, though, just really hit me and left me… numb. Stunned. Pissed. I'm so angry that I have another thing to deal with, and it's something serious that I have to be very aware and wary of my entire life. I can't ever forget about it, because it could seriously kill me, if not just seriously injure me in a split second of carelessness or a mistake. And my dream of someday carrying children? I can kiss that goodbye, even if I weren't permanently on meds that made that a far-fetched notion. The hormones secreted in pregnancy relax the joints and make it possible for them to expand, but my connective tissues are already so loose and whacked out that I'd probably dislocate both hips just standing up and walking, if I didn't rupture something internally. Even before I started having serious pain problems and the other junk--you know, when it was just endocrine and food allergy probs-- I wasn't able to carry a pregnancy past a month or so. Long enough to know I was pregnant, and then they were gone. I know we can do a surrogate pregnancy, it's just… I wanted to experience that. I wanted to carry my husband's child, you know? It's not fair. I'm such a naturally maternal person, and I'm denied the first great joy of motherhood. Hell, I'm worried about creating a family at all anymore, since I know that the state of my health isn't likely to improve much. Oh sure, when we find the autoimmune diseases affecting me and treat those I will start to feel better, but this is a genetic disease and now that it's hit full force it's not likely to back off. For instance, just the other day I had some skin just split open on me. That's not an uncommon thing for me-- the bottoms of my toes used to split open frequently as a girl and into my early teen years. This time it was the skin under one of my breasts, so that was kinda weird, but it happens often to the creases on the side of my fingers as well. Anywhere there's already a crease on my body, it's likely that it'll split open at some point with varying degrees of severity. The split toes were rather deep and would always bleed, but the split under breast was just slight and raw, but very obviously a gap in the skin and painful. That's just part of having crappy connective tissues, I guess.

For anyone who wants a quick explanation of Ehlers Danlos Syndrome and the symptoms, etc., check out these couple of sites. There are a ton of things out on the internet about EDS, but I just grabbed a few that I thought explained it the most clearly and succinctly.

http://www.mayoclinic.org/diseases-conditions/ehlers-danlos-syndrome/basics/definition/con-20033656

- This is a good, easy summarized review, but definitely not in depth at all.

http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome

This one is more scientific, but gives a great, rather short explanation of all the facets. Thorough but concise. It even explains how it's inherited, which makes me less worried about Kelsey's chances to inherit it as well, since we have different dads.

http://www.ednf.org/eds-faqs#Gene

And last but not least, here are some FAQ's from the Ehlers-Danlos National Foundation itself.

Of course, I learned a bunch by reading through all the websites, though I hadn't bothered to read up on it much until the other day. I guess I was just stunned, kinda in denial. Ever since the rheumatologist in December, actually, I'd just been in a funk. Just knowing how friggin' serious all of this is… it's so much more than "just" fibromyalgia. But you know what? I learned that the difference between a syndrome and a disease is that the doctors and scientists know the origin of the disease and the likely course of progression. A syndrome simply means that its cause is unknown, so it's a collection of symptoms that could turn into something labeled a "disease" if more knowledge surfaces. That's all. So to those folks who write fibromyalgia off as "nothing", not a big deal, or something piddly because it's "just a syndrome" and "not really a disease", I fart in your general direction. Your mother was a hamster, and your father smelt of elderberries.

Right now I'm killing time until I head to Phoenix in a few hours for a sleep-deprivation EEG test and a meeting with my psychiatrist. I'm still having troubles with hearing voices, music, and seeing things despite the medication that I'm on. The EEG is to test for epilepsy in the twitches that I have primarily when tired and falling asleep, see what's going on with my darn brain waves. Yeah. I got all kinds of stuff going on. I tell you what, I have not been happy to be forcing myself to stay awake, especially since I've been needing anywhere from 8-16 hours of sleep a day for a couple of months now at least. So staying awake? Hah!

Sigh. Just making everyday life work has been tough, but that's what I am-- tough as nails. The Robot Corey and I are getting along well, plugging along and making ends meet as best as possible. We still have our days and moments, our struggles, but I doubt we'd be human if that weren't the case… especially considering the heavy stress we're constantly under. He has it in his head that he really, really wants a backyard forge, and I'm completely supportive. It'll take several hundred dollars to get all the materials together, and I am encouraging him to use whatever extra funds he can scrape together to do it. He needs a hobby, and he likes to make things. He just hasn't had the space or the money at the same time in order to get it rolling, but I think that now is a good time.

Ah, the time has nearly come for me to jump up and get dressed. The hardest part will be staying awake on the road-- I always fall asleep in moving vehicles!  Well, here's hoping for good news. I could sure use some after all of this craziness. I'll be back with a cheerful post one of these days, you mark my words. It just takes some time to get used to the hammer blows. Heck, it was a good week before I could even let myself think about the EDS diagnosis for more than a split second without tearing up and crying. As I said, though, I am tough as nails, and I'll get through this… pissed off, beat up, limping from cushioned seat to cushioned seat and scrubbing tears furiously from my face, but I'll still make it. Watch me.

I'm sorry I've not been around. One of my pet peeves is when a formerly vocal blog goes silent… but I have a good reason! I do! I'm just so beaten and battered with pain and other sickness symptoms that I haven't the energy to do anything more superficial than post amusing cat pictures on Facebook. Sorry.

I finally dug somewhere inside me and rooted out some of the conflicting feelings I have regarding my sickness with a few colored pencils in the wee hours of the morning. I may get better pictures up, I may not; there are no promises at this point.

I'm just hanging on with my fingernails right now, hanging on until Monday when I see the pain doc and hopefully get a change going, a change for the better… because I can't do this any longer. I am utterly shocked that I made it through this month with my sanity intact and with no attempts to harm myself. It goes to show how much intrinsic strength lies within me that I was unaware of. I think a great deal of credit lies with the acts of kindness and support that my friends and family showered me with, as well. They kept me sane and hopeful, like life rafts that I could cling to, one after another. There were two days this month that I had to call my grandparents to come get me because I was unable to care for myself at home while Drogo was at work, and by "unable" I don't mean "I don't wanna" (because there were plenty of those days!) but I mean physically unable because of the severity of my symptoms. The last one, I couldn't lift my hands above my hips due to pain. It was bad.

Anyway, the month has passed, even if it didn't feel as though it ever would, and I just have a few more days to go. I had a particularly bad flare a week ago (of which the last day at Gramma and Grampa's was part) so I had to take a few extra pills, which means I'm short about 3 now… so I have to figure out how to make it through to my appointment and deal with travel all while short on pills. Ugh. I don't regret it, though. I did what I had to do, and it was the right decision. Worst pain I've experienced yet, it was, and that's saying something. It was worse than the pain that's driven me to the ER in the past. I imagine I'll probably be liquoring myself up a bit over the next few days, as that won't trip the urine test I take at the pain clinic like taking some other sort of pain killer I could purchase off of someone else would. That would be devastating. If I thought I was sick now… *shudder* We're not even gonna go there.

That's all for now, kids. I'm done with typing and thinking. Back to the funny cat pictures and mindless drivel of Facebook, where I long to be. Hah.