(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?

Remember how I mentioned that it's Invisible Illness Awareness Week? Yep, that's still going. And I did a thing, because other bloggers are doing things, but I really didn't want to type it up on both blogs of mine, so I did the thing on the more pertinent blog and now I'm linking it here.

There's been a little quiz/survey/questionnaire thing going around entitled, "30 things you may not know about my invisible illness", and I went ahead and filled that out over on Honeybee Chickadee. If you'd like, pop over and give mine a read. Hopefully it can shed some light and insight into what life with an invisible illness (or three) is like!

I'm still here, still alive (barely, hah!), still kicking (feebly, and then only some days).

Things are tough here at home. There's a lot of stress. Naturally, there's the stress of my being sick; that's not gone away, especially as my condition has deteriorated further and I'm spending 23 out of 24 hours flat on my back in bed. (Oh, how I wish I were exaggerating… Well, okay. I am a little. I spend some time propped up with pillows. ;) ) We're having a rough go of it financially. Medical bills are piling up, and we keep getting hit with unexpected other things, like an astronomical water bill due to the broken pipe in our front yard (but Grampa is coming over on Friday to help fix it with the tools that we don't have, so we don't have to hire a plumber! Yippee!) and Drogo is gonna need new tires for his truck, and those blasted trips to the big city and the copays for the specialists, and having to buy me a new phone, and it just goes on and on and on… Drogo told me that we don't have enough money to go grocery shopping this week. I felt sick to my stomach. We have enough food in the house to make it to his next payday, though, and Grampa said that he's going to be bringing us food from the food bank, even without him knowing that we're so tight on funds. He and Gramma know that we're struggling. It's hard, being a young couple just starting out, even without all of this medical nonsense. RDad did us a huge favor and a good turn by giving us over a thousand dollars free and clear, out of the blue, to pay a huge laboratory bill that came our way last month. I paid that on Monday, and it was a relief.

Drogo is very grumpy, distant, and moody because of the money shortage. His entire paycheck is used up this week on the mortgage and that water bill. There's nothing left over for food or other bills at all, and he still has to pay his phone bill… that'll come out of the hundred or so dollars he has left in savings, and then he'll have maybe thirty dollars left to get us through the next two weeks. And he has to buy gas, too. Oh, he's so stressed, the poor guy… and there's nothing I can do. I am actively working on applying for disability, though. That's one thing I can do. We decided that it's something necessary for us… I'm sick enough to warrant it, and we need the help. Even a few hundred dollars a month would go such a long way…

I'm getting really sick of him being so crabby, though. I'm like, dude. I get that you're stressed. It's a big deal, this money thing. It's something worth being crabby over… for a little while. You're the provider, and we both depend on you. It's a big burden. I get it. But get over yourself. Your attitude is not helping anything, and it's making this whole "hey, let's have a good, happy marriage in spite of all the shit that we're dealing with" thing very, very difficult, so knock it off. If anyone has a reason to be crabby and grouchy, it's me, but I don't act that way because it won't help anything or make anyone happy, so you need to be an adult and suck it up. For the sake of our happiness as a couple and the atmosphere of the home, get the fuck over yourself and stop letting your stress get the better of you, okay?

He says he'll stop being grumpy when the money thing is resolved, and lordy knows when that will be. I think it's a poor decision to let your circumstances dictate your attitude. If anyone has the call to be a raving bitch, it's me. But I don't. Why should I? It would just make everyone miserable, myself included. Sure, I'm grumpy sometimes, but I do my best to be happy and look for the good stuff in life, to surround myself with love and beauty. He needs to do the same. His grumpiness is setting me on edge and making me grouchy and irritable, and I don't like it.

Aaaaaaanyways… I'm also on edge because my bestie here in town moved last week (or was it the week before?) and I hadn't realized how much I'd come to rely on him for company and also for getting around town when the need arose. Having to scavenge for rides is difficult when half the people I know don't have cars and others are out of town for an extended amount of time and most of the people in town I don't know well enough to ask for rides and the rest that I do all have jobs with difficult schedules. I don't drive now, at all. And I don't leave the house without my walker, ever. If I'm not improved within 6 months, I'm gonna start saving up for a pretty, new walker that's more streamlined and much lighter.

This thing is sturdy, to be sure, but it's heavy and bulky. I got what I could on short notice and it's served my needs admirably, but I honestly never dreamed when I purchased it off Craigslist that I would need it this much or for this long. I thought it was just to aid me in travel through the long trek through several airports on the way back East for Christmas. Now I've had it a year and a half and it's an invaluable tool.

Oh, I'm also blogging now over at a different blog I just started. It's different than this blog, not as personal. More for my writing writing, if that makes sense. I need to actually draw up a schedule of topics and write an "about me", but I'm working on it. Slowly but surely. It excites me to be "out there" as a writer, even in a small little corner of the world. I do love to write, and I've received a lot of encouragement. I'll still be here, when I have the energy and the thoughts and feels I need to sort through, but I'll be there, too. Honeybee Chickadee is the name. I'll see you there?

Oh, and by the way, just wanna throw a HUGE congratulatory shout out to Beate and Keith on their engagement! I'm so happy for you two-- you are clearly a good match, and very happy together. I'm very much looking forward to wedding pictures, but more than that I am looking forward to seeing the adventure of the life you two will lead together. It's going to be stunning, I am certain, and so full of, well, life. Keith, that's a heck of a vacation my friend. I've never gone on vacation and come back engaged to a beautiful woman! Then again, I've never gone to Germany, so… maybe that's my problem. ;) Again, congratulations. Much happiness to you both.

I'm going to be doing something a little different here for a while. I don't know how long it will last, and I will probably continue with my regular blogging habits in the midst of this (because girl gotta vent, you know what I'm sayin?), but I think it will be a fun little diversion. I felt the urge to pull out my old journals and scrapbooks last night and start browsing through them, just to see how different my life is now and, more importantly, how much I've grown and healed in my thoughts and in my heart. (Hint: it's a lot!) So what I'll be doing is posting entries from my paper journals that I kept before I started blogging, probably in no particular chronological order, just as they speak to me. I'm going to call this endeavor Blast From The Past. I hope you enjoy this little bit of time capsuley goodness. I think I will.

Dear Dr. L,

I want to take this time to clarify a few things that I feel are impairing the effectiveness of our doctor-patient relationship. I am completely open to the possibility that I may be misconstruing events and that you intended to convey a totally different sense of things. I would like to check if this is the case so that we can better work together to identify and manage my illnesses.

First off, you should know that I read the records I received to pass on to Dr. M, and I have them in my possession since the doctor was unable to receive me as a patient. This means that any references I make to my records are direct quotes, and not subjective memories or impressions.

I admit that I was greatly distraught upon review of my records, as I feel that there have been some serious oversights and miscommunications. (Also, I had allowed myself to raise my hopes in regards to seeing a pain specialist, so being denied that opportunity-- again-- really threw me into a state of heightened emotion.) In the "Rheumatologic Exam" section of each appointment, results for various examinations are listed as though the exams were performed at every appointment when this has not been the case. I recall only 3 appointments at most in the entire year that I have been seeing you that I have been touched or manipulated in some way for an exam; certainly not at every single appointment. It troublese me that at every appointment my joint and flexor tendon examinations have results reading "Normal exam", yet I was never examined. The trigger point examination notes diffuse trigger points throughout, but I am not re-examined for this (though it's true). Also, I noticed on my chart that I have an assessment of "fatigue with polyarthritis". Why has polyarthritis never been mentioned to me, and why are we not addressing it if it has been determined that this is an illness I'm dealing with? You have seen my health declining rapidly over the past year, yet it would appear that an apparent lead to managing my symptoms is being ignored. I need an explanation on this.

This brings me to my next, most sensitive, point. It is very clear to anyone in even basic consistent contact with me that my health has declined noticeably and rapidly within the past year. I know that we are taking steps to arrest this downward slide, yet I do not feel that I am being taken seriously. Perhaps the blame lies with me in not being clear enough about the severity, frequency, and variety of my symptoms, but the sense I get is that I'm being dismissed. It's like if I come in and say, "Oh, my sickness is at a level 7. It's debilitating, it's ruining my life," you take it as my sickness is really only at a level 4 and I'm not really that impaired. Remember the "FMS rating scale" that I brought in to show you how low my level of functioning was? I was trying to get you to understand how low my basic level of functioning had fallen, yet in that appointment's notes and almost every one following (with the exception of the last appt) it is noted that the "patient has no difficulties performing daily activities" despite my repeated testimonies to the contrary. I have tried to impress on you the extreme levels of pain that I am in by the hour, the minute, the day. I have been open about my excessive use of pain killers in the past, which was a desperate attempt to control and somehow evade this pain; to get back to a somewhat normal standard of living. I have, I thought, been very clear about the profuse, intense, and increasing amount of symptoms that I have to deal with, and the disability that has come as a result. I feel that not only is my sickness not being taken seriously enough, but I feel that the measures I am taking to cope are being dismissed as exaggerative.

A perfect example is my walker, the "Bling Chariot". (Or, as my brother calls it, "Walker, Texas Ranger". Or, as the lab techs call it, "Luke Skywalker".) I am not sure how you were unaware of my having it until now, as I've brought it to several appointments with me, and I have had it since last December. I bought it for the plane trip back to W to visit my folks. I knew that I did not have the physical endurance to both walk through the terminals and carry my bags without becoming so ill as to be rendered immobile. The cold of a W winter, and the fact that I was not yet on pain killers, forced me to use it for mobility's sake while I was there, as I could not walk normally due to pain. (This was back when the pain was localized mostly in my lower half.) When I got back home, I didn't use it for a while, feeling that I did not need it for basic mobility. After a time, I began using it when I knew that I would be standing or walking for a long period of time, and the pain from that would make moving very difficult. It was also handy for the fatigue that accompanied long periods of walking or standing. As time went on, my pain increased and my endurance decreased, and I began to use the walker more and more. My husband got me the walking stick that I think you remember so that I would not have to cart the walker around and endure the stigma of a young woman with a walker (no matter now neatly decorated), but that way I still had something to help with mobility issues due to pain and fatigue.

That worked well, until recently the pain in my hands became so great that using the stick is out of the question, and I have come to rely solely on the walker as my means of mobility aid. I explained to you at the last appointment that I use the walker to help with balance, to help me walk when pain affects my mobility, and to provide a resting place when fatigue/nausea/lightheadedness overwhelm me, which is frequently. My endurance is at the lowest it's been, and a simple grocery shopping trip of half an hour requires several rests, sometimes ending in my husband or a friend wheeling me around on the walker like it's a wheelchair because I am too sick or in too much pain to walk myself. That happens more often than I'd care for it to. I explained this to you, and in the notes for that appointment you wrote, "The patient requires walker for mobility states she has had this since 12/12, but this is the first that I have known about. Uses it for fatigue, pain, dizziness, tremors." I see that you listened to me, which is awesome, but I got the sense from the appointment (and from the notes, though I was emotional at the time of reading the notes and have since decided that I was putting the wrong meaning into that part) that you think I'm exaggerating. As you put it, you consider it to be "a crutch". (In reality, though, that's what it is, right? Because a crutch is a tool to help you be mobile when you would otherwise be immobile, so... in that sense, it is a crutch.) In short, I feel demeaned, not taken seriously.

I feel that way with my treatment as a whole, frankly. It appears to me as though you are taking me seriously, so you are not seriously pursuing the root issues of what is causing my pain and distress. I do feel a little more as though you appreciate what I'm telling you with the hand x-ray and ultrasound that was ordered, but this seems to me to be the first decisive action towards further exploration of my condition in a long while. I understand that the diagnostic process takes time, especially with the types of diseases that often mimic one another, but surely there must be a more aggressive manner to pursue diagnoses? I feel that the symptoms that I bring up are casually acknowledged and then dismissed. You sprang into action when I mentioned hand pain, but what about the insane spinal pain that I've been telling you about for several visits? That concerns me, but it is not even mentioned in the notes. The fact that I have recurrent fevers and sores of the scalp, mouth, and nose seem to be of little to no consequence to you. That you note that I "insist" that certain symptoms are related to autoimmune diseases makes me feel like I'm seen as some patient who decided she had something she found off of WebMD, not to be taken seriously. My general practitioner affirmed my inherent understanding of my body right away, and while she corrected me on some points, I still felt heard, understood, and that she was taking action on my behalf and had my well-being in mind.

I want you to take me seriously when I tell you that I am seriously impaired, that I live with devastating pain on a daily basis that is not adequately controlled by pain medication or the alternate coping methods I employ, that I am worsening over time, that I am alarmed by the rapidity and severity of my symptom development and I worry that I will be completely disabled in the near future, and that my life has literally been ruined by whatever is going on with me. I want you to understand that while it's easy for you to listen to my litany of problems and then wave me out the door, I have to live with every single one of them, every moment of every day. Nothing we have tried so far has made any of it go away. I want you to realize, truly realize, that I am becoming increasingly desperate and unsatisfied with my quality of life, and that depression is becoming a major problem for me.

While discussing this situation with my husband, he assured me that I am not a pansy, and that I'm not an exaggerator. If I say it hurts, that's because it hurts. I'm not the type to stub my toe or come down with a headache and need the rest of the day off. He reminded me that I am more in tune with my body than the average person, and I have a good grasp on what I need to do to make life work for me as well as possible. Regarding the walker, he stated that I know when and if I need the walker, and I use it. I don't rely on it unnecessarily. I trust his assessment of the situation, as he sees it with more clarity and less emotional involvement than I do, and he also sees the impact of my sickness from a different vantage point. He knows whether I actually need the walker or not. He sees me resting for an hour or more after doing a sinkful of dishes. He sees me curled up on the couch, day after day, because I am too overwhelmed with pain, nausea, and fatigue to be upright and mobile. He also played devil's advocate and made an extremely salient point, which will be my last.

My husband pointed out that when you see me, I am at my "best". I'm out and about, I'm dressed, I've got my makeup on, and I'm running on adrenaline to make it through being out of the house. You see me when I'm "okay". I'm sitting up, smiling, talking, cracking jokes... it seems that I'm doing okay. But you don't see the aftermath. You don't get to see that I barely make the drive back home and then crash on the couch for the rest of the day. You don't get to see the pain spike because I used my energy reserves for the day at that one appointment, or the fever that comes with overexertion, or the nausea and dizziness that keep me prone even if I weren't so bone-tired and wracked with pain. You don't see any of that. You see a relatively happy, healthy looking girl who wanders in with a walker. So I see why you might not be taking me as seriously as I wish that you would.

This isn't an ultimatum. This is a cry for help. I asked you in the past to help me, please help me, and you said that you would. So please... help me. I want my life back. I don't want to live this way. I hate it. I want to be a real person again, with a social life and my old hobbies and the ability to contribute to my household's budget. I want to find out what's going on, what's really going on, why I'm so sick, so I can do everything in my power to control it.

Please, correct me if I have gotten the wrong impression anywhere. I would like nothing more than for our working relationship to be strong and productive, and I apologize if I offended you in any way.

Sincerely,

Cassandra

*POSSIBLE TRIGGER WARNING!!*

I discuss my abuse in this post, not in a graphic nature, but it could be triggering for some folks.

So next week (if the gov't shut down doesn't interfere), I'm going to be giving a talk on domestic violence at the Marine base here in town. I haven't been in a domestically violent relationship myself, but I was raised in a dv home setting, so it definitely affected me. I'd like to share my talk here, complete with pictures, because C doesn't want to hear it. It's not that he doesn't care, it's that it upsets him too much to hear the actual story. I've told him everything, and he's compartmentalized it away, but he doesn't want to hear it again. It makes him very angry, and there's nothing he can do about it, so it's better to just not say. (That's not to say that he doesn't listen when I need to talk, but outside of that... I pretty much keep "work" away from our conversations, except in a general sense.) I'm really proud of him for coming along and supporting me during the trial. It was very hard for him to hear all the sordid details and to actually see G, to see me up on the stand and to watch me get cross examined by The Snake. He's such a good guy. Fun fact: he saw G at work while he was in the county jail waiting to be transferred to the state prison, and had to ask to be transferred to a different unit to work. Conflict of interests, you see. He might pulverize the guy. Heh. (Not that any of us would have minded, but they generally frown on that kind of behavior from officers...)

So anyway, here's the talk I'll be giving next week. It's not word for word, really, but I wrote down the story.

Recently married, co-running non-profit agency. Emotionally healthy and stable, have many fulfilling hobbies, a solid support system, and several close, meaningful friendships. Also have two cats. Looking at me, you’d think I am a happy, successful young woman with a bright future, and you’d be right. This was not always the case.

Teen years and early twenties: intense depression, uncertainty, paralyzed by fear of failure, low self esteem, delinquency, risky behaviors, suicidal thoughts, escapism, no sense of self, directionless. Felt responsible for family and mother, yet a failure. Codependent, dealing with PTSD unaware, zero boundaries, unrealistic expectations for self and others.

Very few safe people in life, one of them being now-husband, C. Met at 15, began dating later that year. Kept me safe and on the straight and narrow as far as he could- got me to work and school, kept me from drinking and drugs, from unsafe situations and friendships.

Another safe person E, met after disclosing childhood sexual abuse at age 17 and pressing charges. She was my victim advocate and maintained a friendship with me after my abuser received a conviction and the case was closed. It was while preparing for trial and telling the details of my childhood to her that I first began to realize that what I and my family went through was not normal, and was in fact a terribly abusive situation.

 Some of earliest memories are of being physically abused, but by a different man, my younger sister’s father. He was extremely abusive to my mother as well, and almost killed her at least once. One incident I remember clearly is the time that he placed me inside of a heated oven, resulting in burns on my back that required a doctor’s attention. Another time, he tried to force me to drink urine. On multiple occasions and for reasons I can’t remember, my mouth was stuffed with wadded socks. I was somewhere between 1 ½ and 3 years old. He was not the only abusive presence in my life- physically and I suspect sexually abused at day care, and in one abusive temporary home after being removed to foster care when the domestic violence situation with mom and my sister’s dad became apparent.

Mom got custody of me back and we moved to Y, where my younger sister K was born. We had a year or so of peace until my second abuser entered the picture. I was afraid of him from the beginning, as something about him triggered an innate sense of wrongness. Nevertheless, Mom got pregnant with my younger brother and married him.

I do not recall seeing him beat her the way he beat me after a while, but he did make her life hell in many other ways, such as forcing her to pack and move all of the household goods and furniture right after she got out of the hospital from delivering my brother and was suffering from a severe kidney infection. He refused to go to work frequently so my mom worked as much as she could to keep us in food and clothes, but he took most of her money to spend on his own hobbies. She had a secret stash of money for groceries that only she and I were privy to. He ignored us kids unless he was high or wanted to impress someone, and he pretty much ignored mom as well. When mom was working and he was supposed to be caring for us kids, the duties fell to me and I became the secondary mother of the home. 

This role was exacerbated even more when he began coming to my bedroom around age nine and molesting me. Years later, when I confronted him via phone call, his excuse was that he and mom were “having problems”.

His parenting style was erratic and wildly unpredictable, often meting out excessive punishments for trivial offenses that hadn’t been offenses previously. I bore the brunt of this, being the oldest, and the punishments ran the gamut from isolation to beatings (excessive “spankings” that brought heavy bruising and bleeding welts) to food deprivation. He acted as a grown child, with petulance and unrealistic demands of all the members of the family, favoring or ostracizing on a whim. 

In one instance, he returned from a trip with the three younger children and announced that he didn't like my younger sister and never wanted to take her on a trip again. I believe that she internalized this message, as her previously loving, outgoing nature changed drastically from that time on and she became sullen, withdrawn, and painfully unsure of herself. She has spent her dating years emotionally promiscuous, dating younger men who tend to idealize her and put her on a pedestal but who have serious emotional problems themselves and required her affection to fuel their self worth. She was in a long term domestically violent relationship (unbeknownst to the rest of the family) that resulted in the first grandchild.

As for myself, these formative years in such an emotionally, mentally, physically, and sexually abusive environment seriously warped my sense of self, my perception of healthy relationships both romantic and non, and my ability to cope with life stressors. In many ways, I was still the toddler and the child who did not know how to handle life or relate to the world around her, because I was denied the opportunity to learn these things. Instead, I was taught that I didn't matter, that what I said had no value or weight, that the mistakes I made while learning something new were to be punished and thus to be avoided (so trying new things was to be avoided, for fear of making a mistake), that words and promises are not to be trusted, and neither are actions. I learned to mistrust and fear authority figures, to accept violence and manipulation as a part of everyday life, and to believe that women and children are inherently inferior to men, especially men in positions of authority. I learned to keep secrets, to keep quiet and clean up the messes of my dysfunctional family rather than seek help for genuinely distressing situations. I learned that I do not have the right to say no to anyone, no matter how outrageous the claim or the imposition on me. I learned that I was helpless, always helpless. I learned to give up before I even tried. I learned that I was only as good as my contribution, that my acceptance or rejection depended on it. I learned to be a piss-poor member of society.

This is one of the great problems with domestic violence; it doesn't just affect the women or men in the abusive relationship. It fundamentally changes the children who witness it, who live with it day in and day out. Society is built on the backs of the family unit, as it is the family unit that produces the citizens who make the world go round. When the children are taught false and damaging “truths” about themselves and their relationship to those around them, they will grow up to act in negative, damaging ways. They will not respect laws or those who make them. They will not treat people with courtesy and respect. They will not build up, but they will tear down. Why? Because that is what they are taught is “normal”. That is what they see as being the basic model of the world.

I  was raised to be a victim. I didn’t go out and hurt others, but I was the one that allowed myself to be hurt. I was part of the perpetual cycle, because wolves only survive if there are prey to devour. I didn’t understand why I always felt so burnt out, how I kept getting screwed over and hurt, why I felt so paralyzingly guilty that I couldn’t say “no” to anyone. I didn’t know why I felt like such a fake all of the time, why I didn’t know who I was or felt that I was always pretending. I didn’t know what a personal boundary was. Literally, I didn’t know.

It wasn’t until I moved to Id and lived with a family there for several years that I began to understand how a healthy family functions. They had struggles and flaws, like any normal family, but they truly were a healthy, functioning family unit. It took quite a bit of adjustment on both our parts to get used to the arrangement- I didn’t know how to relate to a real family, and they didn’t know what to do with a girl who didn’t know how to be in a family! But we ironed out the wrinkles, and as I began going through counseling and intensively focusing on healing from my past of abuse, I began discovering emotional health and, more importantly, the real me. 

I grew and I thrived within the cocoon of that family, but the time did come for me to leave. I moved back here to Y, supposedly temporarily on my way through to CA, but I ended up staying as I got involved with The Healing Journey and in a relationship with my husband. I’ve continued to intentionally heal from the abuse that I suffered and grew up around, and part of that is using what I’ve learned to try to help others. I know that there are people in the world who make bad decisions. That’s not going to change. So I know that there will continue to be people that abuse other people. What I hope to do is help those who have already endured abuse to heal and become stronger, as I have, and in the process remove some of the people from that pool of possible offenders. 

It’s more than just working with The Healing Journey, though I adore my job, as hard as it is. To me, the most important thing I can do with my healing is to help my family. My ex step dad is behind bars, and I’m proud to say that I put him there. He deserves every year of the prison sentence that he got, and some more on top of that. But my mom was also abused, by him, by my sister’s dad, and by her parents and others before them. She is broken, too. My siblings grew up in the same household that I did, and they are broken. Through my urging, they’re all getting counseling now, and I share with them what I’ve learned when I can. When I go home to visit, we talk, and they can see the growth and healing in me. The ways that I interact with them have changed. The ways that I respond to them have changed. The way I think about things has changed. But most importantly, the thing that gives them the greatest hope for their future is my marriage. 

They’ve seen my mom go through one bad relationship after another, and, like I was at one point, have become cynical about the possibility or reality of a truly happy relationship. They see that C and I have done it, we’re making it, and we are genuinely happy despite the different setbacks that we deal with. I’ve had conversations with all of my siblings, and even my mother, at one point or another regarding my marriage, and they all express hope that they can have something like that someday. Even our friends say that. I make sure to emphasize to them that what we have is possible because we both insist on being happy and healthy within ourselves first and foremost, rather than looking to the other person to fix us or make us happy.

I think the thing that makes me the happiest is knowing that my children will never, ever have to experience what I did, or even my husband to a lesser degree. My children will not live in uncertainty and fear, will not nurse bitterness and hatred within themselves over very real injustices. My children will grow up in a steady, safe home filled with loving discipline and genuine acceptance. I honestly don’t know what they’ll turn out like, because nothing in my experience has prepared me for knowing the outcome of living in a home like that, except for my few brief years in Id. But I do know that my kids will also be very aware of the issues of domestic violence and sexual abuse, and that they and all of their friends will know that our home is a safe place for anyone to come to. So maybe my ex step dad tried to destroy my mom and our family, but it is possible to take destruction and turn it into a gift, if only we are brave and just plain stubborn enough to do it.

Whew. Today has been a rough one.

I did a ton of packing yesterday, and then we moved it all over to the new house, so that definitely wore me out. On top of that, I had a doctor's appointment and a couple of errands to run, plus my last Spanish class, and I was already fighting major fatigue. I did not want to help load up the truck and move our belongings last night-- I wanted to go to bed!! But I helped my beloved anyway, because it would be a jerk move for me to leave it all to him. He looked over at me in the passenger seat and said, "I can tell that you overdid it today."

"You think so?" (Not sarcastically, genuinely questioning.)

"Yeah."

And he was right. I was hurting yesterday, but I woke up at 5:30 this morning due to pain and a growling tummy, and I could NOT get back to sleep. I was so frustrated! So I got up, ate something, and settled onto the couch with my trusty, newly-fixed laptop. After an hour or two, I dozed off and was able to get a couple more hours of sleep before my acu appointment. I wasn't up to walking, because even two painkillers hadn't dulled the pain to a "let's act normal" level, so I drove. That was a big tip-off to E, my acupuncturist, because I usually walk. When she saw I didn't have The Stick with me, she knew I was hurting. She did a more intense treatment on me this time, on my back instead of my front, and then my massage therapist worked on my back when she was done. I still hurt when I came out, but I felt tons and tons better.

I've been medicated today, but I feel funny. Weak. Like my eyes won't focus right, and my legs are going to give out... and this funny, weak, up-and-down feeling in my torso. I don't know how to explain it. But I'm tired. Sooooo tired...

So anyway, I came home and made some food, chatted with J for a while, then hopped in the shower with C and got ready for my next doctor's appointment. To the dermatologist! I got my stitch from the punch biopsy taken out, so now I have a neat little crater that's healing up quite nicely. It turns out that the blotchy rash-lesions on my chest are a fungal infection, and we can blame that on my suppressed immune system. Not only is my immune system compromised, but the dexmethisone for my adrenals suppresses the immune system, and the hydroxychloriquine is a suppressant of sorts as well. So the derm said that I'll probably see reoccurrence with this, especially while it's so hot. It's not unsightly or anything, but still... first acne, now this? I guess I'll just be battling my skin all of my life! At least it was clear and beautiful for my wedding pictures. I am unendingly grateful for that.

Also, I had my appointment with the lady doctor yesterday, and after describing that bleeding situation with her she put me down for a pelvic ultrasound. She didn't feel any lumps or anything in the manual exam, and everything else looked good and healthy, but she'd rather make sure that everything's okay than miss something terribly important... or even not-so-important. I'm cool with that.

After my dermatology appointment, I ran a couple of errands, saw my friends at the pharmacy (heh.), and then headed down to Mexico to try and hunt down a cheaper version of Savella for R. Bad news-- no one has it. Like, they've never even heard of it. Bummer :( But it was worth a shot, and I've found that I'm much better at dealing with the pushy vendors and the even pushier guys. I had one older man follow me for half a block asking if I wanted a Mexican boyfriend. We walked past his friend, who made sure to shout at me that he was single. Oy. I just kept walking, eyes forward, head high, no eye contact. Doing my thing, and ignoring them. There was a really nice guy in a safety vest that held my car door open for me, and stopped traffic so that I could turn around on the narrow little street to get back to the border. He was very kind, and I was grateful for him. I also noticed him tailing me briefly as I first began hunting for pharmacies, making sure that I was okay (because at the first pharmacy, the one that I parked in front of, some guys started trying to heckle me as I walked in). As I said, he was kind.

I was SO ready to be back home and collapsing into bed by the time I was finished with the Mexican pharmacies, but lo and behold... I got stopped at the border for inspection. I had to pull my car off to the side and sit on a bench while they went through every inch of the vehicle. I suppose it was the heat, but I got hit with the most incredibly intense headache while talking to the agent that directed me to pull aside for inspection, and it frightened me how sudden and shockingly intense the pain was. It was focused in my left temple and around and behind my left eye at first, but then it spread to my entire head while maintaining an emphasis on the left side. Any movement hurt, and it was kind of difficult to see. (Driving? Not fun.) When I was finally allowed to drive away and I got the air conditioning cranked up, it abated some.

I got home, changed, and collapsed into sleep for a couple of hours. Mercifully, when I woke up, the headache was gone. Now I'm just left with an upset tummy, an exhausted body (MOAR SLEEP!), and tendrils of a headache dancing through my noggin. And the twinging, painful frame, of course. I don't want to take more painkillers, but I may have to. If only I'd had the Comet I needed to scrub out the tub yesterday, I could take a bath now. But I kept forgetting it at the new house and only picked it up today. If only someone could or would come over and scrub my tub for me!! Alas...

I'm trying hard to be balanced, I am. I don't want to overdo it and pay an awful price, but it's hard for me to realize when I've run out of spoons, or when I'm working with diminished levels to begin with. C says that I have a lag in my energy levels, so that by the time I realize I've run out I'm already in the red. He's right, and I must learn to work with that.

My massage therapist gave me another "prescription" today. In addition to doing one thing each day that makes me happy (and makes me feel happy-- she emphasized that point!), I am to slow down on the packing, take more breaks, and make it fun. Okay. I can do that. At least she didn't forbid me to pack, like she came close to doing! I am definitely forbidden to move furniture, though... Nothing heavier than a chair. (Yeah, I totally ignored that two days ago when I was hauling boxes to the new house...)

So now I am laying on the couch, drinking coffee and tons of water and watching "Shall We Dance?" I love JLo, and I love Richard Gere, so this movie makes me happy. It makes me want to learn to dance. It makes me want to make C watch it so he'll want to dance so we can learn ballroom dancing together! :)

Yeah. It's been a rough day. But there have been bright spots, as there always are. I don't feel down, really, just physically trashed. I really just want C to get home, because I miss his face. And his presence. I love that guy...

Oh, and a major bright spot in the day? I've been getting very positive feedback on the Flip Flop Theory. J said that as she was reading it she was confused for a moment, as she thought that it might have been written by "a professional psychologist person", but when she checked she realized that it was indeed me that wrote it. So she said that I write really well, and it was well done. This pleases me. It pleases me greatly, especially since Miss J is a talented writer herself, and a fellow grammar nazi and etymology enthusiast. (Oooooh, alliteration! I love alliteration.) I am very grateful to be accoladed as a good writer, since it's a talent of mine that I'm especially proud of... and that makes me vulnerable in that area, and vulnerability is scary, scary stuff. So sharing my writing with the world? It's hard, but often quite rewarding. I guess I'll keep it up... :)

I guess I must be stressed without realizing it. My digestive tract is rebelling for no apparent reason, a sure-fire sign that I'm stressing. I guess I'll try to chill out... maybe take some of my own advice from the blog post I just wrote.

In other news, I just wrote a blog post. lol. For FighterZine, that is. Some friends in one of my fibro groups on Facebook challenged me today to write a response to The Spoon Theory, so I did. I entitled it, "The Flip Flop Theory".

So. Off to take my own advice and be kind to myself. That may or may not involve a nap and/or a hot shower. And some tea. Definitely some tea.

Ok, so I know it's dumb, but...

Remember that post I did over on FighterZine? Well there's this lady that has commented twice, and both times she's like "Oh, I wouldn't focus so much on the fibro. Just worry about wedding planning and being happy and forget about it!"

And that makes me feel super invalidated.

Which is dumb, because I know that everyone has a different experience with fibro and other chronic illnesses, and everyone has a different perspective on how to handle situations. I am actively focusing on remembering that and taking it into account. I'm not mad at her or wishing her ill or anything.

I guess I'm just annoyed that, clearly, she didn't read the part where I talked about how I have to use walkers and sticks and stuff, or the part where I was in ridiculous amounts of pain and dealing with mad fatigue. It's like, why would you even comment about that when I'm clearly coming at this from the angle of someone who has to take fibro into account in her daily activities?  Whoopee for you that you don't, but don't hassle me because I have to.

And really? You don't have to take any of the advice you read on the internet. If it doesn't apply to you, then move on. It will apply to someone else, and that's great. Don't poke at me just because it doesn't fit your situation.

Seriously. Anyone with common sense would know that I'm not advocating focusing all of your wedding planning energies on your sickness, just as spending every waking hour thinking about fibro is foolishness. It's depressing. It's draining. It's unhealthy. The intent of the post was to share what I found helpful as I took the fibro into consideration while planning a large event. Did it eclipse my focus? No. And I don't really think that I should have to spell that out.

So this lady just kind of annoyed me, is all. She's not a troll, I don't think. I'm just still so new to writing and dealing with my chronic illnesses that I'm sensitive to all manner of criticism regarding either of those topics... so when I'm criticized about my writing that has to do with my chronic illnesses, it's like a huge Self Conscious Fest in my brain.

Aaaaaaand... I'm over it. Back to packing. :)