Tomorrow is my birthday. Tuesday, that is. I know it's technically Monday right now where I'm at, but I've been awake for a few hours after another few hours sleeping, only a short nap, so it still feels like Sunday to me. Ah, who am I kidding? The days don't "feel" like anything to me anymore. I don't have a regular enough sleep/wake cycle for that. It's all one long day, punctuated by naps long or short.

On Tuesday I turn 28. I can't help but take stock, think about the passage of time and how much I may or may not have left. When I was in high school (during one of my several sophomore/junior years) I attended a prayer breakfast where the keynote speaker was the father of Rachel Joy Scott, the first student to die in the Columbine shootings. His story of Rachel's life touched me deeply, and it also lit a fire inside me that I've never really been able to explain. You see, she had this purpose and direction to her life that makes me ache for something similar, and even though she died quite young, she still left an indelible mark on the world around her with her kindness, her inclusiveness, and her determination to make the little universe she inhabited a better place. The best part is that she did. She knew somehow that she was going to die young, that year that she was shot. She wrote in her journal some time previous that "this is my last year on earth, I have learned what I can" or something to that effect. (I'm going off of a ten year old memory, so it's not exact.) And now that I'm facing the accomplishment of year number 28, it astonishes me because I always felt that I was going to die young, too. I never really expected to reach thirty. I suppose it's because I've spent so much of my life focused on immediate survival, which was the only way to make it through the trauma of the first decade and a half, but the dreams of the future always seemed unreal and hazy, not concrete at all.

When I look back, though, I am very happy with what I've accomplished, particularly knowing now that I was fighting against Ehlers-Danlos the whole time, and some of the other stuff like adrenal fatigue and food allergies as I got into my teens. I've had some grand adventures in my time. I feel particularly fond of my Idaho adventures. They were the ones most closely aligned with my most closely held daydreams of adult life. Have I ever mentioned that one of my most passionate wishes as a girl was to grow up and join an Amish community? The rustic, living off of the land "survival" lifestyle holds a deep, deep appeal for me, and living on the premises of Summer Hill Farm away up in the mountains was a dream come true in a lot of ways. I only wish that I could have stayed longer, or gone up there sooner. The timing worked out, though, to be for the best. I could not live up to the rigors of country life in my current state of disability, so it's best that I moved back to a soft city life before it got too bad! ;-)

I do feel a sorrow, though, for the life that I will not get to live. Chronic illness and intractable pain have changed my life irrevocably, and there is a deep sadness that comes with that certainty. Granted, I'm the most comfortable that I've been in years, now that I have the proper balance and dosage of pain medications, but the thought of years and years of this is… daunting. To say the least. I feel like I'm constantly dancing on the edge of a chasm, and if just one little thing goes wrong anywhere in the chain of events, I will topple over the edge and be broken on the jagged rocks below. If something happens to  the manufacturing or delivery of the pain medication, I'm doomed. If the pharmacy has troubles with stocking (like they have the past 6 months), I have nowhere to turn. I tried getting my meds filled at a different pharmacy, but they all turned me away because my needs were too great. If I can't get the hundreds of dollars necessary each month to buy the meds… I'm toast. So it's not just the thought of the huge drifts of pain that will accumulate through the years, but the stress of not knowing, each and every month, until I'm rolling out the pharmacy door with meds in hand, that seems the most unbearable. It's a really doomy, gloomy thought, so I try to not think about it much. Sorrow? Check. Stress? Double check. Moving on.

I read a really interesting sci-fi book a few days ago called "Factoring Humanity" by Robert J. Sawyer. I don't wanna give away spoilers, but one of the premises of the book is that humanity isn't a bunch of individuals on a spinning rock, totally unconnected from each other, neither is the information gathered over a lifetime lost when an individual dies. Rather, humanity is all connected to one another through what the book terms the "over mind", a collection of the consciousness and information of every human mind that has ever existed. The information isn't lost at death, but rather "uploaded" and saved, like backing up your computer data, and the book goes over the story of how the over mind is realized and explored by a few humans at first, using the information sent to Earth by intelligent life on Alpha Centauri over a period of ten years via radio signals. I know it's just a fictional book, but it really does give me a framework for understanding the world around me that really appeals to me and just makes a lot of sense in some ways. It's given me much to think about, in any event.

That brings me back to the idea of "making a mark" on the world around me, though. Discount the idea of the over mind and just focus in on the thought that when a person dies a shadow of them lives on in a way through the memories of the people they interacted with. I would really like to be able to say that my interactions with the people around me left them happy and better able to cope with the harsh realities of life, you know? Because life is hard. Really hard. Anyone who says differently is selling something. Hehehehe. (Princess Bride reference, in case you didn't catch that.) We all know at least one person who is definitely not a delight to be around, and who seems to just make everything a bit harder to bear; someone who sucks the energy and life from those around them and either doesn't know or doesn't care. I don't want to be that person. Even if I have excuses that seem valid, I do NOT want to be that person. My young life was ruled by a tyrant of that sort, and I know how miserable it can be under their thumb. I absolutely refuse to do that to anyone else if I can help it. I think I've done a pretty decent job of avoiding that pitfall, even with my new neediness that came with the nosedive of my health. Perhaps my "mark" is simply that I made some people happy some of the time, made their lives a bit easier, even? I mean, in a first world world, what else is there?

So I'm turning 28. My husband will be 30 next month. I remember the days when 30 seemed so old! My girlfriend is even older than my husband, if you can believe that. Age never really mattered much to me as much as personal maturity, although I do tend to have a thing for older men. Daddy issues, most likely. I'll own that. lol. So I guess that's it. Just some musings on my life and what I hope I'm doing with it. At this point I don't feel like there's much I can achieve anymore beyond interpersonal goals. I'm just too damn tired. Somehow, I have to make peace with my multitude of dreams and my achy, sleepy reality. I have been doing "better" the past couple months, though. I'm starting to feel like myself again, really and truly. An altered version, no doubt, but no one stays a static version of themselves forever anyway. I'd be altered no matter what.

I've started going for walks again, though, and I get out of the house twice a week regularly, once for grocery run with Corey and once for coffee date with Saka. I've even stopped throwing up all the time, thanks to a lovely med they give chemo patients! I have to take it consistently, though, or else the nausea sneaks up on me really fast and I find myself on the couch clutching my vomit bowl within a span of ten minutes from feeling fine. Gotta keep it in my system. I can't help but laugh sometimes at how different my every day life is from what I'd ever imagined it being!
No artsy cafes or guitar in the park, no challenging classes out at the college with a yoga session afterwards.
No five mile walks in the muggy warmth of a summer's night.
No swell of a pregnant belly.
No certificates of continuing education, no job, no paycheck.
No numbers in my savings account.
No trip to Europe, touring art and culture and food.

There are losses, to be sure. I gotta quit that or I'll start crying. But hey, everyone has losses, and everyone has gains, too. I know I'm better off than I was a year ago, and for that I'm very thankful. Here's to another year of, um… tea and Netflix! Yeah! And a circle of good people who love me very much. That's always a good one.

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

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

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

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

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

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

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

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

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.

(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?

So guess what, folks? The Princess (that's me!) went on vacation. An honest to goodness, get away from it all vacation. I really, really did! It would in no way have been possible without my amazing sister in law, who I did not know cared for me as deeply as she does, but she spoiled me in almost every fashion imaginable.

First off, she had started saving for this weeks and weeks ago, and while I was there I paid my own way on things twice. Twice. In an entire week of going places and seeing things and doing stuff and buying food! Second, she was very careful to keep my physical labor to a minimum, to make sure that I rested as much as possible, and that I was able to access the places we visited. She carried all of my luggage and would only let me carry pillows and the like, even loading and unloading my walker every time we got in or out of the car! I must admit, it was pretty fantastic to have a sherpa, as I jokingly called her throughout our time together.

It was a bit of a whirlwind trip, but it was so incredibly nice to have no responsibilities, to not have to pay for anything, to have fun things to look forward to every day yet not have any kind of a rigid schedule so that our whims and my health could lead the way as to our activities, and to just kind of… well, I have this mental image of, like, my normal life and home and such with this blank white cutout space in my shape throughout the entire week where I would normally be during that time, and the cutout of me was pasted into this whole other life and reality for a week. Does that even make sense? It was so different from how my life usually proceeds that it felt like almost an entirely different reality, which is what vacation is supposed to be, right?

It felt restorative, rejuvenating, and soothing. I was the closest that I've been to my pre-Spoonie self than I've been in years. Granted, it took a lot of assistance to get that, but that doesn't diminish the experience at all. It's a series of memories that I will cherish for a long time to come, I can guarantee that.

Our week went something like this…

Sunday: Colleen (sister in law) arrives and we more or less intend to leave that day, but don't because I'm feeling poorly and it takes me forever to pack, and also what's the rush? We make a list and Colleen packs for me, which is awesome.

Monday: We leave in the morning after stopping by the local muffin store (Yum-azing!), I sleep all the way to Tucson. We go grocery shopping, Colleen cooks supper, take a walk around University, get locked out of house upon return and Colleen ends up breaking in through a window that was unlocked.

Tuesday: Visit an art store for shopping, go clothes shopping for me at a thrift store nearby, have dinner with Colleen's best friends and I have my first margarita. The night is capped with my first hookah smoke and we talk late into the night.

Wednesday: Walk the main drag near the University and visit the tea house we've had our eye on, go to dinner at a fancy place and run low on time, get trapped in the parking garage because of a faulty ticket and barely make the play we've been looking forward to seeing (and pre-purchased tickets for). End the night by returning to the main drag and hanging out at a coffee shop smoking hookah and eating Mediterranean pastries until the shop closes late.

Thursday: Drive to town an hour or so away to spend a few days with my friend Rose. She was interning with the Victim Rights department during the trial that put my molester in prison, and so she was sort of a victim advocate for me and we've kept in touch and maintained a friendship since. Get settled, I get a haircut and Rose takes me on a mini tour of the Army Fort and beautiful surrounding scenery. I fall asleep in the car and nap upon our return, wake to find company over for dinner, and we all hang out until dispersing for bed some time after company leaves.

Friday: Take a 2 mile walk with Rose (yeah, that's right! I'm fuckin' proud of myself!!!), nap briefly before we all pile in and drive to Bisbee to check out the stores and sights. Colleen buys her first "real" piece of art and is now an official adult, and I find some amazing souvenirs and a smaller cast iron skillet of a size we don't already own that I take home for Corey. (He likes it a lot, and used it for the first time tonight to make a sort of omelette.) After coming home, Rose's "Gathering Of The Awesome" party starts a while later, consisting of awesome women that she knows and invited to an evening of yummy light food, good drinks, good conversation and company, and a fun art activity that was also insightful and connecting.

Saturday: Leave Rose's and head back to Colleen's house, go grocery shopping for afternoon picnic planned. I nap for a few hours, then she, I, and one of her best friends that we went to dinner with go up Mount Lemmon and have a picnic, sort of start a fire to keep ourselves warm, and watch the sunset on the drive back down the mountain.

Sunday: We both sleep in, and eventually she packs up the car and takes me back to Yuma but leaves shortly after because of work the next day.

I was feeling pretty good throughout the week, at least as far as "good" for me goes, but as the week went on I could feel myself wearing out. By Friday night I was running a mildly low grade fever and felt pretty gross. Saturday night I declined a proposed meet up with a friend of Colleen's in favor of staying in bed because I felt shitty, and Monday, the day after I got back, I pretty much did nothing but sleep in hour-to-several-hour increments for about 24 hours. I'm still recovering, but part of it is that I don't have that medication that helps so much with the stiffness and pain in my joints anymore, so I just feel more arthritic and whatever than usual anyway. Also, period should be coming soon, and I'm always exhausted the week before my period and sleep more than usual, so I'm not surprised there, either.

I cheated a lot with allergens on vacation, so I'm returning to being a "good girl"… but oh man, I had some of the best food in a long time. Have you ever had fresh sopapillas? Then you are missing out on the culinary equivalent of salvation for your soul, I swear to you. They are so. good. I've also been on a huge muffin craving kick since we hit that muffin place on the way out of town. I had forgotten what I was missing, but now I am constantly reminded of my suffering due to lack. Alas, alack, woe is me, woe betide, and all that sorrowful jazz…

It was a good trip. It was a very good trip. I don't expect to have an experience like that again anytime soon, but I will surely treasure it. I feel different somehow from having  had the experience, but I'll think on that more later. I am so indebted to my ladies, Rose and Colleen. My gratitude knows no bounds. I know that they really went above and beyond for me… and yet for them, I'm sure it seems somewhat of a simple matter. It's funny how perspective works. From my perspective, it was a chance to live life again, to have fun and forget the frustrations and complexities of trying to juggle doctor's appointments and bills and finding rides and medication snafus and all that… to simply be a young woman again and enjoy things… to just have fun, pure and simple! From their perspective, it was doing things that maybe they don't get to do every day but have been wanting to, but it wasn't particularly mind-altering I don't think. It was pretty much business as normal, but on vacation time.

Regardless of who felt what, there is one thing that we should all be feeling right now, and that's pride. Pride in me, of course. Why? Because it's only been 3 days since I got home, and I'm fully unpacked! Yeah, baby! (This is fairly unheard of, just for context.) Now that I'm home, back to responsibilities, I feel a little better equipped to handle them now that I'm not so frazzled and frayed because I had a pleasant break. On the other hand, it makes me not want to deal with real life at all anymore and just continually live the vacation life on someone else's dime… Heh. If only, right?

Corey came home a day early from hunting! So he's been around as I've been slowly wending my way through the day with the intent to pack interspersed with frequent naps. I'm happy that I got to see him before I take off for a week, but it would have been okay had we missed each other like we thought we were going to as well.

I was in bed, just on the edge of slipping into the depths of real sleep after a phone call had awoken me, and I heard the front door open amidst shuffling sounds and a muted jangling of keys. Confession: I can't stand to be encumbered by layers of fabric when I sleep, so I didn't feel that I could jump up to investigate in naught but my birthday suit! I lay there drowsily alert, trying to decipher activity based on the carrying sounds when Corey breezed into the room, all salty, sweaty woodsmoke smell and smiles, bending over the bed to kiss me. It was a warm kiss, but something was awry-- he was eating  licorice!!! (I despise and detest licorice, especially the black kind! Oh, and he knows this quite well.) I determinedly kissed him anyway, but exclaimed afterward how cruel and gross he was, and he grinned and laughed and got a kick out of that.

The day has been a long, slow one. Much resting on my part, and the essential absence of any kind of deadline for being packed or leaving today has been a welcome knowledge. I fell in the shower today when I tried to sit on the stool I have. It slipped out from underneath me and I crashed down, banging my back on the edge of the stool's wooden seat and wrenching my hip a bit. I suppose I shrieked amidst the resounding thump and crash of the fall, so Corey came in to see if I was okay and found me huddled on the floor of the tub, unable to get up by myself and curled in a painful little ball repeating my mantra of "Owwwww, owwwww, ouch, owwww….!" He helped pull me to my feet and I was suddenly incredibly grateful that he'd come back a day early.

My sister in law accompanied me to dinner with the friends of mine that I celebrate the Anniversary with, and we all had a nice early supper at Olive Garden to celebrate the Anniversary. Everyone got along well, which is good. I was not really worried because C is a very charismatic and personable person, but she's not religious at all and my friends are, so I was hoping there wouldn't be a clash of interests or basic world views. We stayed away from the religion topic, though, and all was hale and hearty.

After coming home and all relaxing with books and television shows of choice for a while, I convinced Corey to come cuddle with me as I was going to be falling asleep for a bit (maybe the whole night, maybe just a few hours? I have no clue at this point, though I'm rather hoping for a whole night's sleep). We lay there in the dark for a bit, talking about his hunting trip and how it went, but soon the conversation ebbed away and I found myself dozing off. Just about then Corey got up and left the bed and I was very disappointed that he'd get up and leave just as I as falling asleep. What a super awkward moment to disappear, right? I vocalized my disappointment, but it turns out that he was just closing the door that had been propped open so the cats could come and go as they please. He came back to bed to be with me again and, well, all I have to say is that conjugal relations are awesome, and even if it's been a long time and you feel like a broken record by coming on to your partner again and again without apparent success, keep at it. Keep at it only if you mean it, though; when the time is right a lovely experience will unfold.

I'm gonna come straight out with an honest, brutal truth here that some people may find uncomfortable talking about: stress kills sex drives, and lowers intimacy if you let it. Truthfully, it has been a long time between the last time we were intimate and this time, and that's because we are frazzled a great deal of the time. Sex involves and requires a lot of emotions, and a lot of energy too, and when you're dealing with a mountain of stress being poured over you like a thick, viscous pudding it's really hard to dig up the motivation to do something that isn't "vegging", you know? For me, having sex actually helps me to cope with stress better and it alleviates my depression and anxiety to a degree, but my husband finds himself more drained by the act than I do. I'm revitalized by sex, but he is exhausted. I have a higher, more demanding libido than he does even when things are normal and especially so when things are stressful and out of sync, so that's something that we have both become aware of and keep in mind. It took communication to reach these conclusions, but there was a period of time where I was hurt and confused by his constant rebuffing of my advances; I thought that he no longer wanted me in that way because I had gotten sick, or that maybe he didn't find me attractive anymore, or that he was afraid to hurt me, or that he really just didn't care about me much. I was so wrong, but you can understand how an almost daily (or several times daily) rejection of a flirtatious sexual advance can give the impression that one is unwanted by and unattractive to the object of the flirtation.

Sex can be a huge source of assumptions, miscommunication, frustration, and simmering resentment, anger, and bitterness, and sometimes it's awkward to talk about but you just gotta do it for the health of your relationship. I'm serious. (Plus once you get the kinks worked out and both partners feel understood and validated, you can get some serious toe curling action up in there! If that isn't worth it, I don't know what is.)

Now I'm going to attempt to sleep (again, for however long) and ignore the steadily mounting pain. Falling in the shower and banging yourself up does nothing to alleviate an already worsening flare. Maybe the fatigue will overpower the pain, yeah? Funny how you can play one symptom against another to achieve a benefit to yourself, huh? The Monopoly of Illness, or some such.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So I've been having a hard time lately. A really hard time. Emotionally, physically, financially… you name it, it's been tough.

I've been really struggling with this feeling of emptiness inside me that I've named Loneliness. Rather than try to explain myself aaaaaall over again, I'm going to copy and paste a conversation I had with some friends on Facebook today.

 

• Joan Kelley You having a bad day?

  15 hours ago · Like
• 

  Cassandra Russom Bad couple of months.

  11 hours ago · Like
• 

  Joan Kelley I'm sorry. I can't tell you it will get better. I can tell you that you will come to terms with it and reach peace. But you have to morn your losses and that's hard to do when they're still happening. Gentle hugs.

  10 hours ago · Unlike · 1
• 

  Cassandra Russom It's not that… grieving I can do. I'm no stranger to grief, sorrow, anger, etc. It's the loneliness, the reaching out to find no one there, the abandonment and sorrow I feel when I look around and see no one, and the anguish at knowing my husband is purposefully distancing himself because that is the only way he know how to cope with seeing his only love in pain.
  
  Everyone has their lives, and they are living them, and I'm left behind in the dust because I cannot move. I'm forgotten, frozen in time and stranded in place by my pain and sickness. No one has time for the cripple. Everyone has lives, issues, problems, plans… and I don't fit in anywhere. I'm all alone...

  8 hours ago · Like
• 

  Cassandra Russom I've ALWAYS had friends. I've always been independent. This is such a first for me, I can't even comprehend how to deal with it. I actually got on here the other day, bit my lip and ducked my head, bared my heart and asked for help… and got mostly crickets. That hurt so bad… I still cry about that if I think about it for more than a split second. I appreciate those who did respond to my cry for help, but it wasn't enough, wasn't right, wasn't what I was looking for or what I needed. So I continue on, empty and lonely and just… lost, I guess.

  8 hours ago · Like
• 

  Joan Kelley Self pity, Cassie? You're braver than that. Flannery O'Connor had lupus and wrote best selling novels from her bed. You are not being left behind by life or your friends. Your life is what you make it, and you can make it something even from your bed. As one writer to another, I'll tell you I am working on a novel. I've had one book published. It didn't do so great, but it's a damn good book and if I go tomorrow, I'll know I've made my mark on the world in one small way. Come on, girl. Up by those boot straps! I know you have passion in you. Find it.

  7 hours ago · Like
• 

  Cassandra Russom Dude, I just want people to fucking care about me. What's wrong with that? And I think I've earned some self-pity time after being so damn brave so long through so much. I'm like, never grumpy and I'm always happy and cheerful… what kind of sick freak deals with this kind of pain and isn't a raving bitch? Anyway, the self pity party mood will pass, even though the deep craving for connection won't. I've been growing hollower and hollower over the past 2 months… I know I can keep going. I know I will. I know I'm still a badass and I will make my mark on the world, as you say. But… I just want a little comfort, someone to hold my hand and warm my heart while I kick ass.

  7 hours ago · Like
• 

  Rose Suntken I'm sorry you aren't feeling connected, that people are distancing themselves from you. Everyday that you survive the despair you make a mark. Every moment. You are important and though you may not feel loved right now, you are, very deeply.

  7 hours ago · Unlike · 1
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  Joan Kelley Cassie. I've been offering a connection almost since I first saw you on the fb site. Maybe the friendship I offer is not what you want and that's OK. And yes you've earned self pity but it does you no good. It is not your friend. And I know when you're ready, you'll leave it behind. But you don't have to be cheerful all the time although that's one of the things I admire about you. Lots of us care about you. Admire you. And would comfort you if allowed. Ate you site it's all us ignoring you? Maybe there's a little bit of you pushing us away? You're not going to come up with 2 dozen close loving friends. You'll be lucky to count them on one hand. But they're there. Waiting on you.

  5 hours ago · Unlike · 2
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  Summer Dawn Johnston Believe me, if I were closer, you wouldn't be able to get rid of me!!! I think of you every day and I know Facebook on my phone doesn't like me, so if I miss a post, tag my ass or message me! I'll be more than happy to help on any way I can!!!!!! 

  5 hours ago · Unlike · 1
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  Cassandra Russom Joan, I know you have. I'm not spurning that in any way, believe me. I think it's the lack of physical, concrete friendships that I'm mourning. I don't have any good friends HERE, Corey is gone all day, I'm forced to stay home b/c sickness, blah blah blah. I value the friendships I have here online more than I ever thought I would, especially when I'm not in a funk! lol. Are you sure I am not going to come up with 2 dozen close loving friends? Cause that'd be pretty rad. I dunno. I dunno what I'm really asking for, needing. I just… I just want my mommy? I don't know! I just know that there's a big hollow place inside of me that's all sad and empty and I feel all alone and lonely and I don't know why or how to fix it and I'm just so SAAAAAAAAAD!

  3 hours ago · Like

Melanie Collins Pennock The only constant in life is change. Things will not stay as they are. Believe me when I tell you I understand. Friends and family leave when someone is Chronically ill. For many reasons. We are the reminders that it could happen to them. We cannot do the things we used to, eventually those people drop from your life. If I still lived where I grew up, I would have friends from the past. Here, my friends were mainly from work. They went away. I am alone almost all day, mostly. I actually enjoy it. Everyone finds their new normal. You are going through a great loss. The loss of yourself.......but a new self will appear. What is needed now is letting go and patience. Hahaha! Very hard. Think of this time as a learning time. You are laying fallow, like a field in winter. Eventually you will bloom! 

3 hours ago · Unlike · 1

I dunno. I'm like, really mourning… grieving. Grieving for my lost life, my lost friends, my lost self… I just want someone to come in and really, really care for me. I want to be nurtured. I want to be pampered. I want to be babied and taken care of and just… just… have love poured into me and surrounding me like a cocoon, like a womb, where I can just rest and be safe and happy, just for a little while.

I feel empty. Empty and worn out and worn down and tired, so tired of hurting all the time and feeling so sick all the time and when I say all the time I mean every waking moment. There is no break. Some people with fibro or chronic illnesses speak of "flare days" when things are bad, but otherwise sort of getting along in a fashion. I don't know what that's like. I have "normal", which sucks, and every waking moment is pain and nausea and fatigue, but then I also have "flare". That is living hell. It hurts to breathe, hurts to shift an inch, I want to vomit up my insides and claw out my eyes and my brain and peel my skin off and just curl into a ball and burst into flames and burn away into charred ash and just die. I can't eat, I can't sleep, I can't do anything but lay there moaning and staring at the wall or ceiling or whatever, depending on which way I happen to be laying.

I'm sick of this. My pain doc (whom I adore, by the way, and totally respect, and she is my favorite doc ever) is certain that she can help me improve. I want to believe her with all my heart, but I'm also sick of the utter devastation and heartbreak that comes with hoping for improvement or good news with this stupid disease and then having that hope shattered, like a plate glass window being smashed over my head. I stagger, I fall to my knees, I am cut and bleeding, and the doctor walks away like it's nothing.

I just don't know what to do about this emptiness, this longing. It's consuming me. It's killing me. I'm crying frequently and I hate it. I just want someone to love me! Why won't someone love me? Where did everyone go? Why am I all alone? Why am I home alone all day with just cats and movies for company?

More than that… why is my life this way at all?

Why me?!????

Talking with my pain doc at my appointment the other day, she asked me what I had majored in because I really impressed her with a chart that I made and brought her to describe the various symptoms that make up "sick" that goes along with the constant chronic severe pain. I told her I got sick before I could finish my massage therapy course, but I really wanted to go for neurobiology. She said that I should, because I'd be good at it, and I agree. I'd make an awesome neurobiologist, and she's not the first medical professional or scientist or other professional to say so. I am very intelligent. I have a sharp mind, a way with words, a keen understanding and intuition of how data translates to practical application… plus I love the challenge of working with the brain. I just… I have so much potential, and now I'm trapped, stagnating, forced into a living grave by this stupid malfunctioning body. I could be an incredibly productive member of society! I was an incredibly productive member of society. What the fuck?! Why not G, my abuser? Why not my very first abuser? Grampa told me on the trip up to the big city that he had spoken with the social workers when I was taken into foster care after being rescued from that situation, and they told him that all of the red flags were very clearly displayed in the situation. He was grooming me for sexual abuse in the midst of all the physical torture he put me through.

This is a two year old girl. That is how old I was. There is nothing sexual about a two year old girl. I am just… devastated. Angry. …Angry. And devastated. Is there just a huge neon sign above my head that says "Hit me! Rape me! Fuck with my mind and emotions!"? Seems to be.

I just have so many emotions swirling in me right now, and yet there is still that huge hole. I think it must look something like this inside me right now… (Just don't expect the TARDIS or John Crichton to pop out the other end. That would, admittedly, be cool though.)

Well, given that I've got so much time alone, I suppose I could take time to feel through all these feels and actually process through this stuff. I've really not dealt with any of my feelings regarding fibromyalgia. I've just kind of stuffed it all away. It's been too intense to deal with. Maybe it's all just coming out now, and now's the time to face it.

I bought a book off Amazon recently, and it just arrived tonight. (Talk about timing, eh?)

I think reading through this book and doing the little exercises he has in there will help me process through my own journey. I really do. So… I guess I've assigned myself some homework, something to practically address the Loneliness Hole. At least, I hope it will help. Good grief, I'm so glad I have this blog to word-vomit into. Can you imagine if I tried to keep all this inside? I'd explode!!

That's all for now. I've got a raging headache and my body is killing me. It's telling me that the weather is changing, and also that it hates me. Hah. Maybe I'll take a soak before falling asleep. Lucky me, I've got muscle relaxers now, so I can actually drug myself into oblivion. I'm so happy! Now, to exercise self control and not abuse the privilege… but it's soooo tempting… Oh, did I mention that my neon pain doc has me walking 10-15 minutes a day, and making a calendar to record my exercise habits? I'm naming the calendar The Pit of Despair and decorating it with "pain quotes" from The Princess Bride. The header is, "So it's to be torture, then? I can cope with torture." Week one says, "Life is pain, Highness. Anyone who says differently is selling something." Week two is, "You mock my pain! Never do it again. I died that day." Week three says, "Do you hear that? That is the sound of ultimate suffering." Week four says, "I've just sucked one *month* of your life away. Tell me, how do you feel?" She's gonna love it. I told her that she was gonna kill me. She laughed and told me I could do it. I also failed one of the strength tests because I was distracted by thinking about punching her and then deciding not to do it. When I told her she gave me a fist bump and told me I had great self control, so I passed that test. She's awesome.

Okay. On to the soak, then off to bed. I've talked enough for one night. If you've hung around this long… you're either bored, a true friend, inordinately interested in my inner workings (maybe you should consider neuropsychology, or just psychology?), or plotting to kill me. Well, whatevs. It'll be an adventure, whichever one it is. (At least there were pictures, right?) Good night!