(image found at http://xkcd.com/137/)

There's been some stuff that I've been wanting to write about lately, but I've held myself back because I'm afraid. I'm afraid of rejection, afraid of judgment, afraid that I might offend those readers whom I call friends so deeply that they will turn away and never come back. I've been toying with the idea of writing it anyway, because really, this is my space to be free and be myself without judgment, and the moment I censor myself because of some imagined consequences at the hands of probable judges, well… I might as well just stop writing altogether.

I do know that some of the things I have to write will be unsavory for certain members of the conservative Christian crowd that I used to run with, and that's fine. Different strokes for different folks, you know? But it's the thought of those conservatives that fills me with such dread, as I know that such a community can be rather… unforgiving in nature, and I don't want to bring that kind of wrath down upon myself. I also don't want to make myself the target of some kind of evangelistic campaign designed to "win me back to the truth" or "bring me to the light" somehow. The choices that I've made have been very deliberate and thoughtful, not hasty compromises made in the throes of passion or despair. 

I don't feel like I'm being true to myself, editing out important bits of my life and personality this way. With this in mind, I have decided to write. Stumbling upon this cartoon earlier this evening just underscored my conviction and reinforced my thoughts. I still wish to take the convictions and repugnances of others into consideration, however, such as the toning down of the language that I often use, substituting swear words and epithets for other phrases. My plan is to speak in broad strokes about what I wish, and if I feel the need to go into detail I'll save it for a separate post, so readers can decide if they want to read that particular entry or not.

Why all this hesitation, all this caution, you ask? To put it simply, I'm an active member of the BDSM culture and community where I live, and I apply the kinks and fetishes I am interested in to my lifestyle on a regular basis. No, Corey and I aren't having sex on a very regular basis anymore, simply due to illness constraints and stress problems, but I can say in all honesty that kink isn't just about sex. That is, it doesn't have to be. It can be, or it can be completely removed from lust and intercourse. You really have to be involved to understand. But yes-- I like leather and lashes and corsets and ropes. All of that good old taboo stuff. There is a huge wide world of kink and fetishes within BDSM, of course. There's no way one could possibly be interested in or involved in everything. What I appreciate most about the culture is its emphasis on Safe, Sane, and Consensual, or alternately phrased, Risk Aware Consensual Kink.

What I would ask is that anyone who is finding themselves repulsed or immediately huffy and judgmental, do some research. There are a million and one websites that explain the basics and the theory without being pornographic, and who knows but that the information may prove of use in the future? Just because a person looks "vanilla" (not involved with kink) doesn't mean they are. Most of us keep up a very good front, afraid to come out of the closet for fear of losing jobs, friends, family relationships… There is a lot of stigma, and a lot of misinformation. That's part of the reason why I want to be open and honest about this; to dislodge and refute stereotypes and negative associations.

The reason I bring this up at all is because it's how I celebrated my birthday. The group in Yuma that I'm a part of has monthly "munches", which are vanilla gatherings where we get together and eat, hang out, and just generally have a fun time together. We also have monthly play parties where we get together and do just what the name implies-- we play, as groups, couples, or individuals. I've attended several parties but I've never had the opportunity to engage in any play before, as one of the rules imposed on me is that I'm not allowed to play unless Drogo is in attendance and gives me permission. His days off were changed to include the day the play party was held, and he came with and gave me permission to engage in some play. He said, "It's your birthday; go have some fun," all indulgent-like. It was cute. I was ecstatic. But I will write a separate post about the party and how it went, what I did, etc. for anyone who wishes to read it. Most of the time, at that party and at all the others, my time is spent hanging out with a plate of food and chatting with my friends. Just like any other party. We really are like any other people, except that our mutual hobbies are considered alternative, or even "bad". (Hence the secrecy.)

Another thing I've been wanting to write about but holding back on is my spiritual journey. If you've read some stuff from the early days of my blog, you may know that I was struggling along in a particularly conservative branch of Protestantism known as Seventh Day Adventist. I have absolutely nothing against the Adventist church, as I was essentially born and raised SDA and have a great number of fond memories throughout my life associated with it. A large amount of the people I hold near and dear to my heart are active SDA members, and I spent 3 or 4 years working as a missionary for the church here in the States. That being said, some of the attitudes and actions of members and leaders in the church really damaged me in profound ways, and some of the beliefs held by the church and by the members crippled me in ways that have been difficult to undo.

After moving back to the Southwest from the Northwest, where I lived for several years, I engaged in about a year and a half of study as to whether the basic tenets of Christianity and the authenticity of the Bible were real concepts that I could trust and build my belief system upon. I didn't find it to be so. When I stopped trying to make Christianity my worldview, life started making more sense. I began recovering from the depression that gripped me with suicidal force and pulled me into a blackness so thick that I could feel nothing else, nothing but crushing despair and agony. I laugh a little bitterly to myself when I think that I have a "reverse testimony"; that is, I'm the opposite of the people that stand up and tell how they were tormented and miserable and did all kinds of things and couldn't find happiness or true satisfaction in life until they "found Jesus", and once they became Christians and got saved then they had happiness and peace and life made sense for the first time. For me, I was tormented and miserable and couldn't find happiness or true satisfaction until I walked away from Christianity. Finally, finally, for what seemed the first time in my life, I had peace. I was happy. And I felt guilty, because from infancy up I had been taught that the SDA church had "the Truth", and if I walked away from that I would be lost forever. I worried that maybe it actually was true, and I was going to be lost for walking away… but I couldn't bring myself to go back, to resign myself to a life of such deep unhappiness and emptiness. Not now that I'd finally started liking who I was, seeing worth in myself and seeing beauty in the life around me and before me.

I've come to the place over these past 2 years where I will now call myself an agnostic atheist. My belief is that deities are the creations of mankind, a projection, a metaphor, something we need to survive mentally and emotionally as beings of higher intelligence. Don't quiz me on facts and details-- I'm still figuring all this out, and I was never a good apologeticist, no matter what side of things I stood on. I've always had leanings toward paganism, though-- Wicca or NeoPaganism and all that, or maybe some of the New Age beliefs. As I've been doing research lately, though, I have found that even Wicca is too "religious" for me. Again, I don't believe in actual, literal deities, and Wicca calls upon the God and the Goddess as literal beings. No, I'm more interested in earth based religions that acknowledge the energy and the life forces in the world around us, in the universe we reside in, and that seeks to reach out and redirect those forces with my own will. I think that the rituals have some kind of scientific effect that we don't understand yet, and so the results are attributed to "magick". A great deal of what is done now, without a second thought, could and likely would have been labeled magick a few centuries ago, much less thousands of years ago. If you went back to 12 A.D. and had a Bic lighter in your hand, do you think the people around you would recognize the interaction of friction and heat and fuel? Nope. You'd be a wizard, a sorcerer, a speaker for the gods.

Anyway, that's where I'm at now. I feel a large sense of relief to have written all that, but I also feel a nervous quivering throughout me as I contemplate pressing the "Publish" button. What if I lose my friends? What if my bestie doesn't wanna be my bestie anymore? *sigh* But then I guess… this part of me is still there, whether I speak about it or not. If I lose friends or family or whatever over this, well… them only accepting part of me isn't enough. That's not real acceptance, nor is it real love. It's just a test I must brave, I suppose.

That in mind… there's no way I'd ever reveal any of this to my grandparents, though. My grampa and I recently got into a very heated disagreement regarding Adventists who keep the Old Testament feasts. I know several people who do, and did myself at one point in time. My point was that they are living up to what they believe is what God wants them to do. Grampa got angry because they're WRONG, doesn't matter if they believe they're right or not, and they need to give up their sin and come back to the truth of God, yadda yadda yadda. He came to me and apologized afterward, admitting that he was being very closed-minded and cruel and it wasn't okay. I appreciated that very much. But if I were ever to tell him that I'm a pagan atheist BDSMer who is heteroflexible? Yeah. He'd probably never speak to me again. I've noticed that as people age they tend to become very inflexible, closed, and narrow minded. Their way or the high way, you know? Maybe it's just older Christians, or older Adventists in particular. I mean, they've spent so long having the idea pounded into them that only SDA's have the Truth, everyone else is wrong, and that a good SDA will tell them they're wrong so that they're not eternally lost. Otherwise it's on your head if they're "lost" and you didn't tell 'em, you know? Just another reason I left. I was sick of the gut sickening feeling I'd get when I walked into a grocery store or a gas station and felt like had to pass out tracts and witness or else I wasn't living up to my commitment as a Christian, and that maybe I'd let an opportunity pass that was the person's last. You know, like they'd die in a car accident right afterward on their way home or something. I hated that pressure. I still exult in my freedom as I walk into the grocery store and know that I don't have to interact with a single damn person if I don't want to, and usually I don't.

As my friend and I were discussing earlier, things change and people change right along with them. I am a very different person than I was just a year ago, or even a few months for that matter! I feel like springtime, like a bud poised on the edge of blooming at any second, like I'm finally growing after a season of being stumped and stunted and I'm coming into my potential at last. It's a great feeling. I'm learning and expanding in so many ways, and I just want to keep going. Everything inside me feels clean and happy, despite being sick, despite my life having taken such a drastic left turn. No, things aren't perfect, and there's still stress on me and in our household due to various things (bills, illness, general relationship stuff that happens to everyone), but I know that I'm already a richly developed woman and that the trend will continue. Honestly? I feel like I'm my own friend for the first time, and I'm actually glad to know me. I'm proud of myself. Isn't that the craziest thing?
I got my hands on an off-brand of Nutella that I can actually eat (can we please stop with the gratuitous soy usage, corporate America?), and I understand everything now. I mean everything. The meaning of life, the universe and everything. Turns out it isn't forty two, it's chocolate and hazelnuts. In spreadable form. The gods have descended and Eden is here. It's like the Ferrero Rocher chocolate candies that I've loved so much for so long but can't have anymore (thanks again to the soy problem) have exploded all over this whole grain toasted pita…slice? (what do you call a single piece of pita bread in all its pockety glory?). Of course, the whole wheat makes it healthy. Right? Right. Also, as a completely pointless side note, I must say that not indulging in the Oxford comma for the phrase, "life, the universe and everything" is killing me, but I am pretty sure that's how it's written and I want to be faithful to the original text. Douglas Adams deserves it. (For those completely lost, I'm referencing "The Hitchhiker's Guide to the Galaxy" series by Douglas Adams. It's a series of books that is completely silly, mind bending, and entirely sensible if you read them all through.)

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

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

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

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

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

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






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





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

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

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

By the by… Which is your favorite kitty soap opera name? Got an original one? Let me know in the comments!
I'm watching "Dance Moms" right now (just for background noise), and I can't believe what I'm seeing. These little girls are regularly decked out in more makeup than most women wear on a normal basis, and it just doesn't look right. The cast and crew are just setting things up for drama after drama, and these girls are caught in the cross fire. I feel so sorry for them. And there is just so much grumping, grousing, picking apart, and negativity. I would absolutely wither in such an environment, no matter what the situation. Those little girls are damn good dancers, though. I envy them their strength and vitality.

On February 6, we lost Cortes. I glanced outside just in time to see him looking up from lapping up a puddle of antifreeze that had leaked out of Corey's truck. I rushed him to the nearest vet that would take him, the first being too full and busy, but the second vet that took him in was amazing, so I'm glad we went there. They pumped his stomach and gave him charcoal, but the tests following that showed that he still had 3 times the fatal amount of antifreeze in his bloodstream, and what happens with antifreeze poisoning is that it mixes with the calcium in the cat's body and creates a kind of sticky, cloggy mess that clogs up their kidneys and induces kidney failure, which is a horribly painful and drawn out way to die. I couldn't let that happen to Cortes so I chose euthanasia, which was the right choice but horribly painful for me. I had time with him to hold him and say goodbye, I held him during the procedure, and then they gave me as much time as I needed afterward to hold him and just cry. I couldn't afford the cremation and urn and I didn't want his body to bring home and bury, so I opted for the "mass cremation" (cremated with whatever other animals and disposed of however they do it) and the clay plaque with an imprint of his forepaws with his name imprinted below the prints. They did a phenomenal job with the clay plaque, crimping the edges and making the prints and the words clear and legible. I was thrilled. I plan to paint it and hang it in the living room along with a favorite picture of Cortes in the frame given to me by a good friend specifically for that purpose. A week after Cortes's death, I received a card in the mail from the vet's office expressing their sympathy and signed by all the employees.

Corey and I are both bummed. Cortes was his favorite, and I, of course, love all of my animal babies fiercely. I don't have children, my womb refuses to house them, and the way things stand with my medications and diseases I won't bear children myself. This means that my maternal instinct is funneled into channels it might not otherwise be so present, and that means that my fur babies mean as much to me as anyone's human babies mean to me. SeƱor Drogo doesn't feel the same way that I do, but he cared for Cortes and misses him a lot.

About a week ago, we took in a new cat that needed a home. She's a calico, about 3 years old, such a love sponge and a purring machine. She will start purring, loudly, if I so much as start talking to her! I have a vet's appointment for her in a week because she has a really bad case of ear mites, one ear being entirely full of gross crusty brown stuff, the poor poor baby. Oh, her name is "Fancy". She was a pound kitty before the previous owners got her, and now she's in what appears to be her forever home. I have better pictures on my cell phone, but haven't been able to get them on the computer yet.




Things have calmed down, at least within me. I've had a lot of blows one after another for some time, but things seem to be slowing down and settling, at least temporarily. I have been beading more lately, trying to work up some sort of an inventory to start my Etsy store with. Just the prospect of doing something solid and with a purpose is exciting and fills me with giddiness. I miss that. Being in the house all day and frequently on the couch or in bed is really kind of dreary after a while. I want to go backpacking and antiquing and run errands and all the good old things I did before! I suppose I'll just have to think of ways to adapt them to my current physical abilities. Backpacking probably is out of the question, though, as I learned recently for a disability appeal form that I can only walk about 300 yards unassisted, and that's without carrying any weight at all. Hey, maybe someone will rig up a Bran and Hodor type situation and carry me on their back in a basket?! Hehehehe…

Besides beading, though, and being generally crafty, I'm working on another project to get my medical bills organized and keep track of how much I owe on each one. The idea is that I'll send in incremental amounts regularly rather than waiting until I have the whole amount at once, which will never happen. Ten dollars here, thirty bucks there… that much money can easily be spent on superfluous things, so why not put those bucks to good use? I'm going to use my old dry erase board calendar with the cork strip along the bottom to write out the company/office I owe money to, the balance owed, and at the bottom I'll pin the paper bills, to be discarded when the bill is paid off entirely. I think it's a good plan, one that will help me greatly. I'm more of a visual, touchy person and just having a stack of bills that I can't pay all at once has done me no good, and will continue to do me no good. (Guilty confession time: I've taken to throwing medical bills into a pile, unopened, because I just don't want to see the numbers that would simply ramp up my agitation. What I don't know can't hurt me… right? lol)

Oh yes, there's also the small matter of my oral surgery this Wednesday. I'll be put under and all three of my wisdom teeth will be removed at once because of serious impaction. (I am simply "missing" one wisdom tooth. Guess it never grew.) I'm going to have to eat nothing but soft, mushy foods for an unknown period of time, as I heal slower than the average person. The oral surgeon has seen many patients with chronic pain and autoimmune diseases, which is a relief to me, and he predicts that my healing time will probably be about double that of a normal person, which is to say three weeks to a month, possibly more. I wonder at what point I'll be able to switch from baby food type meals to a more solid diet? Well, if nothing else, at least I'll lose some more weight over this incident. I can almost guarantee it.

I'm reading The Swiss Family Robinson again, and I notice that every time I do my turns and phrases of speech alter slightly and become a little more old fashioned, as they are in the book. I'm still uncertain as to whether it's really a fictional account or true, but I don't have the heart to look it up because I'd liked to believe it's more of a survival manual than an interesting tale. Seriously, though, that family would break the bank if they played Jeopardy! It seems like they know every friggin' thing to do with nature or animals from all over the world. All. over. If I were stranded on a "desert" (I think they are using "desert" as an archaic term for "deserted", as it's really a subtropical island near the equator) I would rather have the father or the older brother with me than anyone else in the world because I believe that they would increase my chances of survival so greatly. Give the book a brief perusal; you'll see what I mean.

The next few days I intend to spend packing and preparing for a stay of a few days at my grandparent's home after my surgery, and I'd like to get some more beading done as well. I bought a bead/findings organizer last week and setting it up will be quite a chore but so worth it in the end. Lately it seems I've been doing nothing but sleeping or reading, sometimes crafting and all times petting and playing with the cats. It's not so bad of a life, what I've got going on, but still… it does get a bit monotonous and irritating after a while. I still don't know what to do with the fact that my pain is a life-long load I must bear, so for now I've tucked that thought away and out of sight. If I don't, it threatens to become overwhelming and drag me right back into the depression I have so recently escaped from.

For now though, it is, as my mom used to say, "bedtime for bonzos"! Or "Shadrach, Meshach, and Tobedwego!" (That's a joke based on the name of Daniel's companions in the Bible.)
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.

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

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.

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.
If I think about it while it's happening, the slow, mushy minutes between wakefulness and full sleep are a time of curiosity, anxiety, and fear. I always dream, always, with the rare exception a few times in my life. More than that, I often remember what I dream for long periods of time, and while I'm experiencing a dream it is the realest thing in the world to me. Often my dreams are more real than my waking life, the sensations more vivid and the impressions more clear.

For all that, though, I do not tend to have "good" dreams. They can range from the benignly bizarre to confusingly odd, from mundane with shocking twists to terrifying bloodbaths with exquisite detail. Frequently I dream of abuse, rape, my abuser(s), the present with macabre oddities to pollute it… Sometimes I wake up screaming. Sometimes I wake up not sure where I am, not certain at all of my safety. Sometimes I don't wake up and Corey must do it for me. Sometimes I wake up and I think that the man next to me is one of my molesters. I tremble and I shake and I try to catch my breath while my brain catches up with the truth of matters.

I know all this. I know all of this and I also know that I have no idea what the dreams that night are going to be like, and the silent, slow fog of apprehension creeps in and hovers around my bedside in a thick miasma of unpleasant uncertainty.

If I think about it while it's happening, I become frightened while I fall asleep. Fortunately, I've schooled myself not to think about it very often.
I have been asked quite frequently this month if I'm happy about my new diagnoses, happy to know more of what's going on? That's a hard question to answer, truly, but the answer I give is kind of a yes-ish yeah sure when I'm asked. I mean, yeah, but

The news I got is not pretty or happy or pleasant, not by any stretch of the imagination. The hypermobility, there is no treatment or cure other than palliative care, meaning that my excruciating, unmitigated pain will continue without cease or relief, most likely for the rest of my life. Not only that, but it comes with joint slippage and dislocations. Definitely debilitating. Then you have the connective tissue disease and the arthritis, both of which include pain of their own but can be treated. However, there is a distinct possibility of degeneration in time, especially with the arthritis, which is debilitating as well even if the pain is alleviated. It would be nice to have some of the pain taken care of and taken away, even if not all can be. All that, on top of the Hashimoto's and Addison's that must be closely managed if I'm to live normally or stay alive at all, the food allergies and IBS that can make my life a living hell in the blink of an eye and last for weeks at a time,  depression that sucks me into the deepest, darkest pits of blackness without warning or mercy, asthma that prevents me from hard exercise lest I suffocate on my own carbon dioxide, colitis and internal hemorrhoids that leave me doubled with agony and passing blood and bloody mucus… and by the way, do you know how scary it is to use the restroom and see great amounts of blood among your excretions?! Yeah. Bleeding internally is kinda terrifying, no matter how close to the exit it is. And among all that I still have the original fibromyalgia, which is a roller coaster ride of bullshit all on its own. (One of the theories I've read recently about the rise of the chronic illness population is that with the medical advances we have, the weak that would have died off in past times are now surviving to adulthood and bringing their illnesses with them. Looking at the list above, I really think that I would have died off, no? I mean, I barely survived birth.)

So the answer to that oft-asked question would have to be "no". No, I am not happy about these new diseases. Relieved? Yes. Vindicated? Totally. But happy? No. No, I am not fucking happy. I am oddly proud that I was right all this time, though. At the same time, I'm done. I'm so, so, so done. I've had a fever for the past I've lost count days, with the chills and exhaustion that comes with. It's been the best I can do to get most of my dishes into the kitchen sink, but forget about washing them. I've had a minuscule to zero amount of motivation for anything in what seems like forever, and I'm so sick of it! I could go on and on with the complaints, but I'm tired of things being wrong and they just are and it doesn't matter if I write about them or not. I fear I am defeated at last… though I know in my heart that it is only temporary. I will rally and return to myself, someday… but for now, I'm wiped out. I haven't the heart to muster anything but naps.

I'm considering going to my grandparent's for a few days to rest, to let them take care of me a little. I yearn for a caretaker often and heartily, someone to lighten my load a bit. It's hard enough being so damn sick, but trying to fight through the medical system and do my truncated version of daily life at the same time is one plate too many to spin it seems. Who doesn't want their mommy to smooth their hair and make them soup when they're sick? If I had a dedicated caretaker, I wouldn't' have to worry about rides so much either. I hate searching for rides when I have an appointment. It's so difficult, and I generally feel like I'm taking advantage of the goodwill of my friends. I'm worried that I'll wear out my welcome one of these days. I had a thought, though, while I finally began to do some research into the lighter aspects of arthritis (I've put off any research or dealings with any of the new diagnoses until now. I just kinda don't wanna know yet. Don't wanna deal with it. Bleh.), that maybe I'll be able to find a support group here in the area. Friends online are a lifeline to be sure, but in the flesh support is another thing entirely. It would be especially nice to find a couple of folk in my age range as well, but I think that's pushing my luck for Yuma.

So, back to being all blah and curling up with my fever and sweatpants and electric blanket and tea and movie. I've been watching both of the 300 movies tonight in keeping with my rather black mood. The blood and gore used to bother me terribly, but I've learned when to look away. Also, Corey's dark humor has rubbed off on me a bit and I find some things amusing that I didn't used to. I learn so much watching war movies with that man. I swear he's an encyclopedia of battle tactics, armor and weapons throughout the millennia. It's amazing, really. Can't wait until he is teaching all that interesting stuff to our kids.
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.