I will be honest. I'm having a tough day today.

It isn't just the pain, though that's there. It isn't just the collection of "other" symptoms, though those are there too. (Seriously, where do these fevers come from?!) It isn't just the lag from yesterday's 4-hour-both-way rides to see my geneticist, though that's definitely there. It's just... all of it. All of it and the mental checklist and morass of file folders for undone tasks that's taking over my life and never seems to get any smaller. I have to do ______ for disability process, I have to do ____ and _____ so I can continue to receive basic medical care, and oh yeah, I have to evaluate whether I'm just not trying hard enough and that's why I'm gaining weight that I can't lose and why I'm taking money at exorbitant rates from my dad who totally deserves better and why I've doomed my husband to a life of "in sickness" with no "in health" and why I quit school and work and maybe I'm just not really trying, you know, to make the most of my days at home? Maybe I really am just lazy, and being sick is a convenient excuse to give up altogether? Maybe I'm not really that sick and I'm tricking myself into feeling more ill than I am?

I think anyone with a serious chronic illness will ask these questions of themselves at some point, especially if they've given up anything significant because of it, and especially if they're still young. I'm just having a hard time with staring down the years and wondering if I'm going to continue to decline or not. I'm doing my best not to, I really am. Sometimes, especially when you don't see any improvement, it's hard to keep at it, to take the meds, to swallow the vitamins, to do the physical therapy, to eat healthy, to look on the bright side. I'm just tired. I'm so tired, you know?

Anyway, the trip to Tucson yesterday was to see my geneticist, the one who actually diagnosed me with EDS. She had gone to a conference last month, and I was eager to hear if she had any insights for me that were new, and eager to discuss some research that I'd been doing into various co-morbid diseases and syndromes and possible other diseases that could be aggravating the EDS. (For anyone who is new and doesn't know what EDS or Ehlers-Danlos Syndrome is, the Ehlers-Danlos society has a nice, concise run-down of the various "types" found in the syndrome family. I fall very neatly into the Hypermobile type of EDS.) Unfortunately, there are no miracle cures as of yet, but she did have some interesting observations on preventative care.

The conversation we had was wonderful-- I enjoy a good discussion peppered with medical terms :)-- and I came away with a clearer understanding of what symptoms lie in the domain of the EDS, what symptoms come with comorbid diseases or syndromes, and what symptoms are the completely unusual outliers that I can focus on in a bid to find more answers about what's broken inside of me. I have a few interesting leads, but I don't really want to discuss them yet, not without further research. Something I am going to try out is kenesio tape, which I'm not really familiar with but she says is great for EDS because it supports the joints and provides compression to aid with blood flow. I've heard of it before, but not really looked into it because I'm allergic to adhesives, but I think I can make it work anyway, maybe with something like "vet tape" that doesn't have any glue. The idea is to be more proactive with splints and braces, to avoid injury before it happens instead of treating it afterward, and that's a new approach for me. I guess I hadn't really accepted my diagnosis yet, kind of hoping that it was all a big mistake or something... but if I'm being proactive about it, then that means that I accept that it's a thing, and that makes it real. It's not like I haven't done that before, but the funny thing about "chronic" is that it drags on through years and years and you have to face things more than once. I've read that chronic illness is cyclical, and I believe that the acceptance is cyclical too. Or maybe it's just a process. Either way, it just feels big and scary and I don't wanna! But on the other hand, if it can make me feel even a bit better, it's totally worth it, cause that means that I can apply that energy that was tied up in feeling crappy and making myself power through so much unpleasantness and I can use it for something productive, even if it's just having a friend over for tea.

Well, whatever. All I can do is keep trying, right? Plodding forward, one millimeter at a time, that's me. Maybe this plodding will lead me forward into a better place. I can only hope so.

Prolly more thoughts on this later, I dunno. Right now I'm just copying and pasting a post I sent out in one of my closer-knit fibro support groups this morning.

Well, I sure feel invalidated as hell this morning. I posted that AWESOME picture that I tagged y'all in (I'll include it here for those who I'm not friends with outside of the group) and not only does everyone think that I'm sitting here with a knife to my wrist apparently, I got a message in the wee hours of the morning and one that was there when I signed on this morning, and I dunno if you guys will catch the same vibe as I do but I'm totally getting the message that "you're too negative and you focus on your pain too much; knock it off and be cheerful, eh?" which is incredibly discouraging and angering and all kinds of things that I really just don't know how to articulate. Thoughts?

Last night's message: "Hello? I'm I don't know who you are and you don't need who I am but I am one of R's friends and somehow I've been able to see your posts on my bulletin... is something wrong? I've been kinda feeling down too but I shouldn't be.

Sorry so many typos on there lol.

I meant to say we don't know each other. I've been seeing the... negative stuff you've been posting. So I wanted... to know what was wrong... if you wanted to tell me. I can understand if you find it weird to talk to someone you don't know about something so personal but... I'm going to be moving out of AZ in May and I'mm feeling kinda down too so I thought it would be worth a shot."

This morning's message from a different person (Note: she had asked to be untagged in the photo because it looks bad for her, professionally as an actress.): "Yeah it was a cool piece but yeah most of the people who still use Facebook are actors directors producers etc so I stopped putting anything on there about pain or pretty much anything negative or if I do I try to make it funny. I stopped my blog a couple months ago my pain is what it is it's been two years this is where it will likely stay thinking about it just gives it power. Can I suggest something for you to read? Maybe you are not at a point where it's something yiu can absorb I wasn't ready when I bought it a few years ago read three pages and out it away but the secret has changed my life even before I read it. I started living the law of attraction and yes I still have a bad day but I'm very cautious about what I think and say bc what you think about you bring about. I'm a therapist and never got any if this but so much has changed w my pain my acting everythjng that I have to believe there is truth. Google it and try it for a couple weeks maybe it will help. I don't go to meetings lol I don't do anything other than watch my thinking patterns Just a thought from what I see in your patterns "

I responded, and I'll post that too if you want, but this response to MY response just makes me even more frustrated (but I KNOW that wasn't the intent, to attack, I guess I'm just sensitive???).

Note: Here's my response, for clarity's sake. "I get what you're saying, and that's something that I *do* try to live in my life. I'm very conscious of my thought patterns and I monitor my thoughts and feelings quite closely (hence why I blog and talk to my husband and besties all. the. time.). For me, though, it's more than just "don't think of negative things" whatever. I've learned that--and this is just for me, you understand, because I tried it the other way and it just made me miserable-- it is more healthy and productive to acknowledge whatever negative thoughts or feelings I have, think/talk through them, and then move on with my life. I don't wallow except on rare occasions, because everyone needs a pity party day once in a while I think, especially ppl who hurt all the damn time. But for me it's best for my mental and emotional health to acknowledge the stuff that ain't so positive, try to find something funny in it, and keep going.

The "don't think about negative things and you won't bring negative things into your life" dealie just doesn't work for me. And that's okay. I'm glad it has done a lot for you. For me, I put as much love and light out into the world as I can, and I get a TON back in return. But I don't dare gloss over the bad parts because it all just festers and creates "disease" in my life. Not the physical disease, of course (though our emotions and whatnot DO have an effect on our physical health as I'm sure you're well aware), but… oh, how to explain it? Anyway, I've known waaaaaay too many people that pretend nothing is wrong, ever, and we should only think and talk about positive things, etc. for me to want to go back to that kind of thinking intentionally. (And it could be that what I've experienced/read/seen is a distortion of what YOU are talking about… I mean, connotation is a hard thing to convey. You say "banana" and we will each have a different image that pops into our head and different feelings about the word though the core concept is the same. Try that with the word "love" or "happiness" and things get crazy lol) It's been my experience, working with abuse survivors, that acknowledging the negative stuff and processing it appropriately is what robs it of power, not pushing it away in favor of focusing on the positive. I believe that there's a balance of the two that can and must be achieved for optimal emotional and mental health. Maybe that balance doesn't always come across on Facebook, but this IS the place where a lot of my support system is located, and also where I try to raise awareness about the very real nitty gritty of what it's like to live with chronic pain, chronic depression, chronic illnesses and diseases, and PTSD and other abuse survivor related issues. On a totally unrelated note, have you ever thought about creating a facebook page strictly for your professional life? One of my artist friends has done that because of some of the same things you mentioned-- potential employers/buyers, professional peers, etc. It's a way for her to display her portfolio and other business related stuff without it getting cluttered in with her personal stuff or lost and vice versa."

"Thoughts are def hard to convey here bc yes I def still acknowledge the bad things and I've had a lot. I had a bad couple days and I have allowed myself to feel upset and angry it's more how I think about it that changed. I guess my perspective is different. I found out heartbreaking news about my ex acknowledged it would make me sad processed it talked to a couple people quickly but cautious of the words I used when talking about my future for me not the universe and then it passed. Everyone is different. I guess I've been thru so much bad in my life including men hurting me and pain obesity and have fought so hard I finally just found a balance or something that works. I don't tell most people about it bc it sounds too new age even to me lol. But I thought I'd ask but I get it's not for everyone. I'm also alone so I have to do things different. My support system is here but not much emotionally and I have no spouse or anyone to talk to or depend in to listen it say it will be ok. It's all up to me and that's ok. I've never been my own rock and I'm learning
Well I'm glad u have a way that works . Feel better"

So I guess I'm just super irritated because I'm always very self-conscious about how I come across, whether it's appropriate or if I'm being too negative or angry, etc. I know she's just trying to help, but it feels just as invalidating as someone who knows just what I choose to present to the world regarding my pain coming up and telling me that I've probably been handling it all wrong and this is what helped them and I should consider doing it that way. Wait, come to think of it… that's happened to me countless times, with all of my diseases. And my food allergies. And it pisses me off, guys! I'm just like, you know what? Even if I chose to be completely negative and wallow in my misery and my pain and my agony and not try to find the positive and do my best and find humor in the situation and be totally authentic about my struggles and where I'm at, that is my right. That is my right as a sick person and that is my right as a healthy person. So stop fucking telling me how to handle my shit, okay?!

I was so pleased with myself because I've progressed so far on acceptance of my fibro diagnosis and that I'm not going to find an underlying disease to treat and miraculously recede my fibro to livable, which is a hope that I was clinging to until the "just fibro" appointment earlier this month. I've come across some well of determination, hope, and inspiration that I thought had dried up long since, beaten down by the daily grind of such incredible levels of pain and other miseries, and life is looking up for me. And then… this.

Maybe it's no coincidence that just when I seem to be getting my feet under me in whatever battle I'm fighting (emotions, facing and processing and healing from abuse, fighting depression, my health, my food allergies, etc.) something comes along that tries to knock me on my ass again. Maybe I am just too open and authentic. Maybe I leave myself vulnerable to attack. Maybe I leave myself vulnerable to those who think they know better. God, why are there so many of those people in the world?!

Anyway, I'm quite irritated, angry, frustrated, guilty and not sure if it's legitimate guilt or totally illegitimate and false… Because of the crazy dysfunctional environment of most of my life, I have a hard time telling false guilt from legitimate guilt, and I tend to take on guilt that isn't mine and shouldn't be aimed at me at all. So I never quite trust the guilty feelings anymore, because I know that it quite probably isn't true or to be trusted. Generally, I'm above reproach. ;) So this is why I blog and openly put things out there in social media, to get the feedback of the wide network of people that I trust. I thought I could trust this chick; she's a fibro warrior too, a psychologist, an abuse survivor… but she took the opportunity to slip the sword between the ribs, probably all the while thinking that she was just helping me let out the bad blood and balance my humors! And that just goes to show that you can't trust everyone with your pain. According to her theory, I suppose I should stop this blogging and sorting through my thoughts. Which, as we all know, is baloney for me, as this blog is the thing that has helped me sort through my thoughts and feelings in a semi-coherent manner for years. I suppose that's what smarts the most-- the suggestion that my coping methods aren't good enough, that I've been doing it wrong this whole time and any progress I've made is incidental.

Enough ranting for the day, I suppose. I just had to get all this out there, and boy do I feel better! Whew. It's no longer roiling inside me in a jumbled mess, confusing me and making me heart-sick. Ahh. I seriously feel as though I can physically breathe better now.

Suck it, actress lady. You have your ways and I have mine, and mine are fucking awesome. And no, I'm not still bitter. :P

Today is definitely a rest day. I've been napping up a storm the past week or so, especially since I had that really rough day without the meds. I've spent the last few days trying to recover from that, but I pushed it too hard and went down yesterday. The awards ceremony really took it out of me, and yesterday when I met up with E for a lunch meeting followed by work, I almost passed out in the restaurant. I was soooo sick.. apparently I went whiter than a sheet, and I barely made it out the front doors to the car. I had to leave my car there while she drove me home, and needless to say we didn't get to work that day. (No paycheck this week. Bummer.) She called me today, worried like crazy, but I assured her that I am alright. Apparently she had a panic attack on the way home, she was so worried, and she was talking about it with her husband (who adores me like I'm one of his own, and I totally love him too). Poor E. I did just what she said and rested as soon as I got home, though. I spent the rest of the day in bed feeling pretty lame after sleeping a few hours, and I've done the same today. Just woke up from another 4 or 5 hour nap. Sleep is nice. It keeps me from hurting while I'm doing it lol. Also, I haven't been sleeping well due to nightmares and increased pain at night, so I often wake up after a few hours, stay up with C until he goes to sleep, then crash out again with him. It's nice to be able to spend so much time with him, though!

I sincerely hope that this passing out thing is just a fluke, a product of overextending myself and using up all of my resources, rather than a new symptom come to torment me. I've been struggling with lightheadedness and fatigue for some time now, but this is new... and really, really unpleasant. Truth be told, it's terrifying. I'm scared to leave my house now. What if it happens while I'm driving? While I'm out and about on my own? Bad enough that I never know when a twitching fit is going to strike, but now this? I'm scared that it's a sign that my body has taken another step on the road to breaking down. Maybe I'm a hypochondriac, but dysautonomia was the first thing that came to mind. Of course. lol. But then, how can you not be a hypochondriac of sorts when you don't know exactly what's wrong with you and you've got a whole buffet of symptoms at your disposal that could point to a bagillion things? Yep. You just roll with it and keep your fears to yourself... and then spill them onto your blog. Heh.

I broached the topic of guilt with E while we were driving home yesterday. She put me in my place for even daring to compare her sickness and mine, vehemently stating that she deals with a different illness with different symptoms and she has to take care of herself in different ways. She said there was nothing to apologize for when I told her that I was sorry I couldn't work and that I was sick, and she told me not to ever apologize for that again. I love that woman. I explained to her my guilt about her working so much and being so sick, yet I can't/don't/won't. She just shook her head and said that she has to see the HJ grow. I brought up my theory about that being what she has to do to survive, but it's not me.. and she kinda agreed. Like, the HJ is her baby. In the big picture, she has to see it grow and flourish. It is necessary to her personal well being, even if that means putting up with sickness in the meantime. I want to see it grow and flourish, too, but it's just not the same. And so she has to hid her sickness in a way that I don't have to, because she's being watched by certain people and agencies in the community and they will strike at any perceived weakness. One thing I do know, though, is that she would be far sicker without me. I help her a ton, and we help support one another. We hold each other up. So my guilt is alleviated. We both survive on our own terms, and mine isn't wrong... just different.

On a happier note, J officially booked the ticket that will take me to her family's home so we can spend Christmas together! Bwaaaaaaah! I'm so excited. We haven't seen each other since... since... like, spring of 2012. It's been a year and a half, abouts. Far too long. But distance cannot separate the hearts of true roommates! Haha. Anyway, her parents are being super generous and buying me a ticket to fly out there, then she and her mom and I will drive back to Y and drop me off before they continue north to see J's uncle and J flies back home. I still am having a hard time absorbing the reality of this. I mean... that is so incredibly generous and kind of Uncle S and Auntie C. I just... wow. Wow. Like, what did I do to deserve this? Makin' their daughter happy, probably. lol.

Coraline has become quite brave and comes into C's man cave with no trepidation, rubbing up against C's computer chair and accepting petting from him. This, from the cat that fled to the other end of the house at eye contact with him just a week and a half ago. It's because she and I bonded well, she trusts me, and so when I "lured" her into C's room while he was in there she trusted that it was ok. After the initial exploration of trepidation, she's a bold little bugger. Her favorite new toys are a pink eraser and a white board eraser. She plays with those things with such ferocity and focus... it's adorable! I am keeping both kitties inside today, though, especially Coraline the black. People do sick things to cats on Halloween, especially black cats. I'm sad to say that this is the case, but you just work with the reality you've got.

I made a tentative friend through an online forum, and C and I are going to meet her for the first time tomorrow. I've been looking for female friends in my community, since most of the friends I have are guys, and all of my good girlfriends are eons away. I'm lonely for ladies. However, it's not like I can "get out" and make friends, so I am cautiously trying the internet. Taking C with me is a good precaution, I feel. I have a good sense for creepers and so does C, so if anything's off the odds are that we'll notice. Plus we're meeting in a public place, so that's much safer. I hope it pans out! As much as I'm an introvert, I do miss having friends over just to chill now and then. I kinda wish I was well enough to do something for Halloween. I miss dressing up, mostly because it's fun and I love the theatric, but also because of the social aspect. If I were feeling ok, I might even try a bar this year, just to see what all the fuss is about. Not like I can drink anyway. But eh... I'm going to keep the porch light off, ignore the knocks. We didn't buy any candy, and I do not have the energy to get up and down answering the door every few minutes. I wish that I had The Nightmare Before Christmas to watch, though. I love that movie... C hates it. He and his brother are both super freaked out by claymation. Funny fear, right? Anyway, today's the perfect day to watch, especially with C at work. It's a family favorite. I have so very many pleasant memories associated with that movie... very nostalgic. I like nostalgia.

Survivor's guilt. Wikipedia says, "Survivor, survivor's, or survivors guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off."

 I think that chronic illness fighters deal with a type of survivor's guilt, though it's not the standard definition. I mean, we have survived a traumatic event in a way, as our illnesses frequently strip away even the vestiges of our former lives, carving us into a hollow shell of what we used to be and planned to be. The guilt, though, lies not in the fact that we have survived and others haven't (in the sense that we lived and they died), but in the sense that we have survived and they haven't had to learn to survive this at all. We feel guilt because we do things differently to survive, and we no longer fit in with the lockstep of "normal" expectations. I feel guilty because I am a survivor, and I do whatever I have to to make it through the day. I feel badly about myself when others around me do not have to take such drastic measures to cope with the daily, minute stressors, when they are able to sally forth into the dawn, skipping meals and losing sleep and still able to put forth energy that comes from some boundless spring. Sure, maybe it's not as boundless as it would be if they properly tended it, but I have to concentrate all of my efforts and planning and foresight into cultivating the same trickle that they get when they carelessly wander through a day.

I feel guilty for surviving on my terms. 

I feel badly about myself when I don't have a concrete answer to hand out to people when they want to know what's wrong with me. I can't adequately combat the well-meant suggestions because I don't know if it would work or why it didn't work when I tried it, because I don't really know what's wrong with me.

What do you say when someone asks if you're feeling better? I smile, I make something up, and I feel guilty. I survive, however I have to.

I take my pain pills, knowing that they're damaging my body and not a long term solution. But what can I do? I went without for less than 24 hours and I was so sick that I could not sleep or eat, in addition to the ripping pain. Even now, I'm on my proper dosage but I've got this ever-increasing migraine pressing down on me. I know that a vanilla coke will go a long way towards setting me to rights, and I know that some folks would disagree, but I'm surviving.

What gets me the most is when I have to make the public appearances, to go out and do stuff, and people see me and think that I feel better. They have no concept of what I mean when I say that "I'm sick a lot. I'm sick right now." They absolutely cannot fathom the levels of energy that I'm losing just by sitting in a crowded room buzzing with conversation. They don't understand how much it takes out of me to sit in a chair and focus my attention on a stage, on the words being said. When I say I'm tired and I want to go home, it's not because I'm bored, or a little fatigued from the day's efforts. No, I mean that it's probably dangerous for me to be driving but I'll do it anyway because I have to. I mean that I'm having a hard time focusing my thoughts on conversation and it is difficult for me to focus my eyes. I mean that my body aches and my stomach is as upset as if I had a stomach virus. I mean that there is a thick, wet blanket between my senses and the world they're supposed to be interpreting. I mean that my pain levels are spiking, and I'm likely employing breathing techniques just to keep from groaning aloud. I mean that I can feel that I am going to be punished for this in not too short a time, and I don't want to be around people when it happens. I don't want them to see me at my weakest; it will just alarm them. I don't want the energy drain that comes from being around people, any people. (Except my husband, oddly enough...) I don't want noise, I don't want conversation... I just want the comfort of silence, my cats, my couch... familiarity. Comfort. Cool quilts against my face. A glass of water at hand, a mug of peppermint tea for my inevitably upset stomach. Dim lights for my aching head.

And so I try to leave before I get to that point... but I feel guilty. I feel guilty because I'm surviving, however I have to. I hate being in that place, the crash after the adrenaline-fueled outing. I'll do what I can to avoid it. And yet, so often... I feel guilty for surviving on my terms.

Why? I know why.

It's because I don't believe myself.

I know my body. I know my pain patterns. I can tell when I'm getting sick, when the pain is spiking, when I NEED another pain killer to stymie the big spike that's coming that kicks off a cycle of uncontrollable, fully body pain. I can tell when I need a nap. I can tell when the autoimmune side of things is flaring. Granted, there's still a lot I don't know, but there is also a lot that I've gotten good at pinpointing. I know when I need to eat. I know when I need to sleep. I know when I need to stop doing an activity. But all too often... I ignore myself.

Why?

Because I minimize. Ohhhh, do I minimize. I catch myself doing it when I do presentations about my abusive past. It wasn't really that bad, if you think about it. I mean, all that happened was... Did that really happen? I think I'm probably exaggerating what happened. It wasn't that big of a deal. I need to just get over it and stop assigning so much importance to little things.

I didn't realize how much I minimize until C and I were discussing some of my symptoms, and he mentioned my need to eat frequently and right. when. I'm. hungry. If I delay, I get very ill. He's seen it. It's not a secret. It's something I've been dealing with since my teen years at least, and it's just one of those things that we work around in every day life. And yet hearing him describe what happens to me when I get sick from lack of food, well... it was... empowering. It was like a light bulb went on in my head and I thought, "Aha! It's real! I really do get sick! I get very sick, and someone else has seen it! Wow... that sounds terrible. That's kind of a big deal. Huh."

I had a big tussle with minimizing after my rheum blatantly stated (twice) that she didn't see the need for me to be using my walker. I came away seriously questioning myself in many aspects, wondering if I've been wrong and just exaggerating my symptoms all along... if I can really trust myself to know when and if I need something... because, after all, she's a doctor, so she must know, right? I felt guilty for surviving. C tried to put that to rest, assuring me that I use it and my pain meds wisely and judiciously, and that I know my body. He stated emphatically that I am not a wimp or a complainer (which is a great fear of mine-- perish the thought that I should ever become a weak, dependent, whiny loser like G!), and that I know myself. I know what I need to do, and I do it, and the doctor can go fuck herself. I'm inclined to agree... when I'm thinking straight.

My emotions and the self-talk going on in my head tend to get all tangled up in a tangly ball of tangledness, and it gets messy up in there. One of these days soon, I want to draw up a list of "what I tell myself" and "what is, a.k.a. the reality of the situation". Kind of like a cross-referencing chart, you know? So that when I begin to tell myself a certain thing, I can look at the chart and say, "Nuh-uh, that's not how it REALLY is!" Then I can follow that up with the truth. I'm excited for that. I just don't have it in me to create that right now.

I went to an awards ceremony for contributors to the local community because I nominated THJ as non-profit of the year, and we made the cut into the final category! We didn't win, but we still got an award for making it into the nominees. One of our volunteers was also nominated for Volunteer of the Year, so she got an award too. It was a fun chance to dress up and meet a lot of important people, but I'm still getting over being so sick yesterday and I was drained and ready to go home by the time the mingling hour was done. By the time I left I felt pretty bad, and I am definitely being punished for my outing. But you know what? It was worth it. I have some thoughts on my boss's own chronic illness and pain and how that helps/hinders our working relationship and friendship, but now's not the time. This is long enough already. However, I'm not working tomorrow because I did tonight, and that's a whole 'nother load of guilt. She's all sick and in pain too, but she works herself into the ground from her home office... while I'm at home, lying on the couch. I'm sick, she's sick, but she's the one doing so much work... and I feel guilty for surviving however I must. But I must remember that working myself into the ground and possibly ending up hospitalized doesn't do either of us any good. I'm trying to cope long-term, here... trying to survive in length. But oh, the guilt...

I know it's there. I know partially why it's there, even. But what I haven't figured out yet is how to be rid of it. I think that chart would help. I need to set the Should Monster straight again. It's been too long.

So my friend J is studying to be a nutritionist. I know she'll be fantastic at anything she decides to pursue (she's just one of those people), so I know she'll make a great nutritionist. We've talked before, briefly, of her analyzing my diet and coming up with some helpful tips for me, and just the other day she asked me to be a guinea pig for her and keep a food journal for a few days. I agreed in good humor. After all, my friends all agree that I eat pretty healthy, so what do I have to hide?

I'll be the first to admit that I do have an odd diet, and not particularly varied. There are a few factors to this. First, I am constrained by my food allergies, and there's not much in the regular stores for me outside of fresh produce. Secondly, money is an issue, as I can't afford to be buying all that specialty stuff, and we really can't afford anything outside of basic staples at this point in time. Thirdly, there's the energy factor: I have all these grand ideas for dishes to make using the ingredients on hand (I used to love creating meals for the S family and myself, and I miss that), but I don't have the verve to put those ideas into action. Do you realize how much energy cooking takes? The standing for that length of time alone is prohibitive. Fourth and foremostly, there's the nausea factor. Many times I know it's time to eat, or I'm hungry only briefly, but the nausea kicks in and the idea of food is just not appetizing at all... much less cooking, immersing myself in food preparation. Yuck. Oh yeah, I also forgot about my finnicky gut. I can't digest a lot of things very well, so I stick to simple, easily digestible foods like fruits, grains, and some veggies. Protein makes semi-frequent, small appearances. I've learned the hard way what happens if I eat too much protein in a day... which means that I can usually have a solid protein only once a day, twice max. I don't even bother with nuts anymore, unless it's cashew butter (which I can't buy for love or money in my town anymore anyway).

So with all that, it's a wonder I eat at all, I'd say. I do try to make sure that I eat well, as well as I can. But lately... I've still been wrestling with depression. It's not bad, just enough to be annoying, you know? Kinda like a toothache. It's not harming you, but it colors the edges of your day and kinda makes everything a little more annoying. And with that depression comes apathy, which means I really don't care about a balanced diet right now. In addition, I'm more prone to eating junk food. I'm craving it much more often, and, what's more important, indulging it more often.

Keeping track of my eating habits opened my eyes to just how much junky food I've been eating lately, and I found myself swamped with guilt. I couldn't believe it, but I really felt really bad about... well... my failure. Yes. I had failed. I wasn't eating well, and now there was proof. The thing about falling short of my ideals for myself is that I then, in my head, become a bad person. The Should Monster comes out to play and I beat myself up. It's terrible. It's awful. It's regular as clockwork.

So I gave in and junked it up yesterday. I mean, if I'm already screwing up, why not go for the gold, right? I even had pizza. (For reference, I'm allergic to at least one thing in every single component of pizza.) I've been cheating quite a bit lately... which, of course, makes me feel even worse about myself.

But no! I will not allow myself to abuse me. So I've seen that my eating habits could be better. Now I take this new day and try to do better. That's it. It's that simple. I'm not a horrible person because I had a soda the other day. I'm not somehow bad and undesirable because I ate a cookie. How can I even think that these choices constitute a moral failing somehow? I'm nuts, man. There's still a bunch of stuff to hammer out in my head, but I'm making progress... a little bit at a time.

I'm just kind of thinking about life today... You know, 42. The meaning of life, the universe, and everything. Well, my life, anyway...

Don't get me wrong. I like my life. Love it, in fact. I've got a little house of my own, I've got a solid relationship with a wonderful man (though lord knows it took years for that to be able to happen!), my husband has a steady job that pays our bills (mostly... if I could keep out of the danged emergency room, that would help), I have health insurance, the medicines that I need to keep me alive (wish I were exaggerating on that one), I have a job that I love with an understanding boss, and we have food in the cupboards.

That being said, there's also a lot that sucks. I mean, it's hard. Really hard. Every day is a battle, and a fierce one. I'm very grateful for my antidepressant. Even just the low dose that I'm on has helped to smooth out my peaks and valleys so much... it's a relief. That was a hard, draining battle to be fighting all the time, and it was making my health struggles worse. Still, I must fend off the grasping tendrils of depression almost every single day. There are days when I wake up bright, cheery, and not an emotional cloud in sight, but... those are the invisible pink unicorns, pretty much. The purple elephants. Oh, sure, I don't spiral downward into the black gaping maw of that horrible pit that I grew to hate and yet know so well. Well, not often... but I still have those voices in my head that scream and holler at me my worthlessness, my failings, the futility of my fight or of pressing hard after anything good in my life... because really, I do have to chase the good things in my life. Nothing has fallen into my lap. I've worked damned hard for the good things I've got, and I refuse to let myself botch them up.

I've had a lot taken from me. My childhood, for one. Abuse, molestation, more abuse, dysfunctional family dynamics, playing the mother to everyone including my mother, more abuse... My family. Sibling bonds torn apart, taken from my mother on more than on occasion, divorces and betrayals... My sexual purity. I can't even be sure I was a virgin when C and I went on our special camping trip. I have no way of knowing, really, because so many of those years are lost to the blackness of my mind, willfully blocked to save my sanity. My mind. Poisoned genes passed down to me through generations of mental illness, a past that guarantees PTSD and depression, and I am helpless to resist the black tide that has washed over me for so long.

And just when I thought I had it all beat... just when I had climbed out of the fighting pit that I was thrown into at birth... I get sick. Real sick. Fuck my life. Now my livelihood is taken from me. Parts of my identity. Dreams. Plans. Hopes. Aspirations. Gone. All gone, in the span of a year. In place of my bright future, I am left holding ashes. The family that I thought I would have... gone. Two miscarriages and a diagnosis later, I am left wondering if I will ever hold the living embodiment of our union? I wanted to travel, to work for the forest service or a national park, to live in Alaska and hike Denali, to hike Mt. Whitney, to travel the floor of the Grand Canyon from rim to rim, to fly to distant lands and eat the local foods... I can't even eat out at restaurants. The past few days, I haven't been able to stand for longer than 5 minutes because of pain and fatigue. I want to see my friends, to go to movies and go out to eat and hang out at houses and go to the store or even just window shop, but I can't. Those basic, simple pleasures of life are denied me, and I weep.

I weep for the unfairness of it all. Haven't I suffered enough? Haven't I been through enough? When will it end? I was going to be a massage therapist, a mighty advocate, an outdoorsy photographer. I was going to be a survivalist, living off of the land and cutting my own wood. I was going to bear and raise children. I was going to visit every single state in the US, and other countries besides. I was going to go to Italy, France, Scotland, Ireland, England, Japan... And now? Now I lie on the couch, watching the clock and anxiously awaiting the time for my next pain pill.

So how, I ask you... how the hell am I still happy when I see my husband walk through the door at night? How am I still happy when I go to work and spend my hours tidying, filing, typing, creating, listening? How am I still happy when I create some especially tasty dish to savor, or even when I have a good cup of tea or a particularly perfect bowl of oatmeal? How am I still smiling when I see the pictures of my tall, beautiful sisters clad in pink and white and covered in flowers?

I don't know. I really don't. By all rights, and if I didn't have love to anchor me here, I would have killed myself by now. I am tempted to believe that the heart can only take so much suffering and pain before it breaks and all hope is lost, but... it seems that my heart has the capacity to absorb more suffering than I ever would have imagined. Maybe it's love that pours in to regenerate and heal the broken, bleeding parts of the heart so that it can go on? I know that my heart didn't start scabbing over until I went up north and found... love. Pure love, in the arms of a sister/mentor/friend, and in the warm circle of an honest, human, humble family. Things I had never experienced before. No, not even with C. We loved each other, true enough, and passionately. I would gladly have spent my whole life by his side, even then. But I was broken, so broken... even he, my life vest, couldn't reach the broken parts of me that needed healing. It had to be someone else, years later, when I was ready to face the truth of my brokenness.

Maybe that's why I can still smile. Because I've faced down my brokenness and I know that I cannot be conquered. All of the loss, all of the suffering, all of the agony... and I'm still here. Weeping, smiling, laid out on the couch like a corpse at a wake, but I'm here.

I guess you can cry and smile at the same time.

Yesterday was the Women's Empowerment Conference that the HJ hosted. We had a lot of help to make it a reality in the first place. For instance, a law firm sponsored us and gave us the money to hire caterers to provide a free continental breakfast and a lunch to all of the women and vendors present. That's nothing to sneeze at, for the total head count was somewhere around 100, way beyond my expectations! I helped to run the registration table by the front door, then I sat at the HJ's booth. There were lots of flyers and information on our table, as well as those silicon bracelets that everyone likes so much, and there was also one of those informational tri-fold cardboard things, but it was very hastily put together for this event. E gratefully accepted my inquiry of making another one for us. I know I can do a great job, and it's important that our information be displayed attractively. Presentation is a large part in what draws people in. (That's why it bothered me so much that some of the books we had to sell in the summer programs were clearly outdated and very unappealing. It made them much harder to sell, and even believing what was in the books already I had a hard time reading them and taking them seriously.)

I didn't stay for the whole day, leaving after the keynote/lunch speaker, but I enjoyed what I was there for. I was there for the majority of the day, and it wiped me out! I did get a free chair massage from the massage therapist who was there, which helped my back pain for a little while. I was definitely glad I had brought my stick and a large quantity of pain killers, though. I can't wait to debrief about the conference on Tuesday at our HJ meeting. I am certain that it will be an event that will continue for many years. I'm so happy that we're becoming a presence in our community with annual events! There's the talent show, for one, and now this Conference. I love being a part of something that makes a difference in people's lives. I really do. I feel very fortunate that I have both the opportunity and the skill set to be a valuable part of the HJ.

I was very tired afterward, though. I came home and napped, then C and I went out to run errands, but I was in bed and asleep before ten last night. We went to the Verizon store and priced phone plans for when I switch over to his plan. It is so expensive! C and I went through the budget item by item yesterday, and I'm discouraged, frankly. I mean, I know we'll be okay, but... I feel guilty for being such an expense to him. It's not like he didn't know it when he married me, but I wish that I had ways to ease his financial burden. If I could work, that would be one thing, but not only am I not able to really work, I bring medical bills and expensive food bills on top of all that! If I could live on rice and beans I would, but I cannot digest beans (or most proteins, really) well and it causes me more problems. After taking out all of the necessities like bills, we have just above a hundred dollars to buy gas and anything else we need. I told him that I will buy my own gas, and not to worry about it. I can manage that much with my paycheck. I'm still trying to pay down my credit card, but it's a very slow process. E and I were talking about increasing my hours this summer, and I'd like to, if just for the sake of finances. (More than that, though, I savor the feeling of making a valuable, viable contribution to something other than myself.)

I was racking my brain, trying to figure out where I can cut expenses to help, but I can't come up with anything. Even when it comes to food, as expensive as it is, I buy only the basics. Fruit, veggies, sometimes chicken, cheese, or fish, rice from time to time, yogurt (though I'm cutting that out for other reasons), rice milk and cereal, oatmeal, applesauce... That's it. My big splurges come in the form of, "Omg, can I have raspberries this week?!" And I know that C's not upset with me for any of this, but I almost expect him to be. Weird, huh? I know where it comes from, at least partially, though, and C's called it on more than one occasion. When I'm fretting about costing him money, he says, "I'm not R, and you're not your mom." It's true. R gets very worked up about spending money, and Mom is not good at not spending it. I do not nonchalantly spend money on things that are not necessities, though from time to time I feel an insatiable urge to spend money on myself in a way that is not necessity-related, like buying a dress from Goodwill or a new bottle of nail polish or a new piece of jewelry from WalMart or Etsy or something. I do, but it always comes out of my own money, what little that is, and I invariably feel the pressure afterwards that I could have spent it on something more productive... but the pleasure in my purchase overcomes the guilt. Usually.

It blew me away the first time C made that comment about R and mom, but I immediately saw the truth of it. And you know what? I'm actually glad they're getting divorced. They have put much work into their relationship and into the family, but it's still very dysfunctional, and it's better for everyone involved if they go their separate ways. I think everyone will be happier eventually, even if they aren't at first. The kids are going to have to get used to living within much tighter means, and while it may be difficult for them it will be a valuable lesson. R is a good person, as evidenced by the fact that he's buying the family a place to live and will be giving them money for a pre-determined period of time. That blows me away. I mean, when you're divorcing someone... usually you don't volunteer to give them money after you're split up. I never had any doubts about him being a good man, but he needs to get his PTSD under control. He's also very moody, which I could never handle. One of the things that draws me to C so much is his stability in nearly every area. R is stable financially, to be sure, but his moods are so subject to change... I always checked with mom to see what kind of mood he was in before I called to talk about money with him. Mom has her own mood swings, but maybe I'm more used to those since I grew up with them. I don't know how to explain her, exactly... I mean, she's generally always upbeat, in the same way that people say I'm always happy, but she can go "manic" and be swept away in some idea of hers on a moment's notice. A trip to the store is never just a trip to the store. You may end up 3 other places before you finally make it there, which always wore me out and made me impatient. (Realizing now that it was probably my lower-than-normal energy levels contributing to that without my realizing it-- not enough spoons!) I mean, I love adventure as much as the next person, but I just want to get my errands done and then decide if I feel up to anything else. I suppose that's the fibro talking. I do cherish the memories of her coming home from work and announcing that we were going to San Diego that weekend. I dunno. I'm ambivalent about it.

There's so much more to the situation, but I'm pretty much just staying out of it. They're adults. They need to work it out on their own. There's a situation that Mom is involved in that I am uncomfortable with and disagree with, but I've made my feelings known and now I just have to let it go. I still love her to pieces, but I'm not her caretaker. It is strange for me to keep my hands off emotionally, but it's taken a lot of work for me to be healthy enough to do that. She's my mother, not the other way around, and though I spent much of my life trying to take care of her... that's not my job. It's not my place. So she knows how I feel and why, and I'm letting it drop. She needs to work things out on her own. (I do kinda feel like a parent watching their child make mistakes, though... it's hard.)

I am sad about not being able to visit for Christmas this year, but Mom has said something about her possibly being able to visit me sometime this year or next, so that's very exciting. I would love to have her here. I told her that she'll be so proud of me when she sees my little house and the life C and I have built, but she said that she's already so very proud of me. Warm fuzzies!

I was telling C about our conversation, and how Mom used to be afraid that being with him would hold me back, "live a small life", because she has always felt that I'm destined for great things. Now, as we're discussing the stability and love that C has brought into my life, we both agree that he's the solid foundation that has and will allow me to grow into my full potential. The analogy was that he's the soil that will let me bloom. When I told C that, we started this joke about how he's dirt to me and how that would sound if we said it around others. So now, as a term of endearment, I shout at him, "You're dirt to me!" It's pretty funny :)

I saw the neurologist today. While he is more skeptical of fibromyalgia than I'd like (it has no objective test to prove its presence in a person), he seems to know what he's talking about when it comes to other things. In addition, he's friendly and laughs easily, so I will stick with him, at least for now.

When I told him about the twitchies, he immediately began asking questions. He feels that many of the things wrong with me are puzzle pieces, including the fibromyalgia. Indeed, there are several diseases that fibromyalgia mimics the symptoms of, so in reality I could not have fibro at all, but some other disease. Isn't that interesting? So I'll be getting an MRI, an EEG, and some electrical testing in the next few weeks, to see what's going on with my nervous system. Honestly, there are several suspects that we are trying to see if we can rule out, and MS is one of them. Many of the symptoms of MS are the same as fibro, and the twitchies are definitely of a neurological origin, so it's a suspect until we rule it out. Lupus is another. Basically, we're looking at autoimmune causes it seems, although he agrees with me that the big accident back in '06 may actually have something to do with my nervous system dysfunctions.

Other than that, life's been pretty calm. I've had a few more instances of grieving D, but I know it's normal and healthy, so I just go with it and cry it out. C will often hold me while I cry, which is nice.

Have I mentioned lately that I love being married? The more time passes, the more love I am filled with for C, and the more gratitude wells up and overwhelms me. I am so grateful that I chose this path for my life. I am filled with more satisfaction and happiness than I have ever had in my life. My time in Id was very fulfilling, and comes a close second, but the work I was doing to heal from my past adds an element of discord and instability that is lacking in my current life. I have stability, for the first time in my life. Real, honest to goodness stability. I have C to thank for that. He is a Mr. Steady, that's for sure, and he works so hard to make sure that all of our ends meet. I know I can trust him and rely on him to care for me... and our children, eventually. I love that man, more than I thought I was capable of, and it's clear that he loves me as well. Life is good. Loving and being loved, despite whatever financial difficulties we are having... everything else pales in comparison. I am basking in the glow of knowing that I have my own little home, a place that will always be here for me. That doesn't mean that I don't still get restless and have the urge to go on an adventure, but the adventure is sweeter knowing that home is waiting. A real home. My home.

I see the pain specialist tomorrow, and I hope that he can help me. The patch took a few days for the medicine to build up in my system, and it's helping a little, but I'm still quite reliant on painkillers. I feel less shame about using them now, less guilt for taking them. I don't really understand why I feel as though I need to prove myself by enduring large amounts of pain, but I'm realizing that it's pretty silly. If I'm hurting and have the means to lower that pain, why shouldn't I? I would want anyone else to do the same. I do tend to treat myself much more harshly (and abusively) than I would ever treat someone else, but I'm working on overcoming that. I'm still learning how to be kind to myself. It's a long process, but one that is proving worthwhile. I think it's contributing to my satisfaction and joy in life. C is wonderful, but he is not and cannot be my everything. It would be unhealthy for me to expect that. I need to find my own joy and satisfaction outside of him and our relationship, although he does bring me much joy and satisfaction. That's why I'm grateful that I can still work some. It does a lot for my spirit to know that not only am I still somewhat self-reliant, but I am helping others. It's been hard, this loss of independence and control over my life... but I still have some measures of self-reliance left, and I cling to them.

Now I'm just rambling. I ran out of the effective painkillers my rheumatologist gave me to tide me over, so I had to take a large dose of two other painkillers that I still have. It worked, and I feel very relaxed and happy, which I love. I can see how easy it would be to become a prescription pain killer abuser, but that is something that I do not want. That contributes partially to my guilt over pain meds. I'm afraid that by enjoying the relief from pain and the mild euphoria that the drugs sometimes bring, I am choosing the path of the drug abuser. I know that's not the case, but enjoying the effects of the pain killers frightens me in a way. The weather has been forcing me to take more pain killers than I would normally (the barometric pressure is all over the place!), but I have other, more active ways to relieve the pain as well. C claims that I'm going to kill him with wanting sex so much, but it's just a natural part of who I am. I think he secretly enjoys the fact that I want him so much. In fact, I know he does. He pretends to hold out because he likes to watch me try to convince him to "give me a dose of painkillers". I found that little tidbit out last night, and I pretended offense, but I find it just as fun as he does to try to convince him, so the game will go on.

Summary: getting the medical help I need, despite our financial hardships. (Payment plans FTW!) Life is good. I love my husband, and I love being married. Took some meds, I feel good, and I borrowed some books from the library so I've been reading like crazy lately. I've been more fatigued than usual, so it's a good past-time.

Yesterday was a seriously confusing set of emotions for me. Very complex, very intertwined, and very pervasive. It left me feeling both invested in and totally invalidated, which is a strange and repulsive mixture. I don't recommend that you try it anytime soon.

Remember how I was all excited that BJ and I were doing lunch and shopping? Well, we did. We also had a lot of time to talk while doing those things, and it was during lunch (our first activity) that things started going downhill for me.

I have come to the conclusion that BJ is not actually a safe person.

This is hard for me to come to grips with, because I have always assumed that she was. Indeed, for a long time she has seemed to be, especially given the largely dysfunctional and toxic people that I was surrounded with. She has been a safe person for me for so long that to have that status shifted is, well... very unsettling. It's almost like an identity crisis of sorts.

I suppose I should clarify what I mean by "safe person", just to be on the safe side. (Heh.) A safe person is someone whom we can have a safe relationship with, versus someone who is toxic and unsafe. According to authors/Drs. Cloud and Townsend, this is how you can identify a safe person:

"So, what are safe relationships? A safe relationship is one that does three things:

1. Draws us closer to God. (Matthew 22:37-38)
2. Draws us closer to others. (Matthew 22:39)
3. Helps us become the real person God created us to be. (Ephesians 2:10)

When John (Townsend) and I asked people to describe a “safe person” to us, they gave us these descriptions:

• A person who accepts me just like I am.
• A person who loves me no matter how I am being or what I do.
• A person whose influence develops my ability to love and be responsible.
• Someone who creates love and good works within me.
• Someone who gives me an opportunity to grow.
• Someone who increases love within me.
• Someone I can be myself around.
• Someone who allows me to be on the outside what I am on the inside.
• Someone who helps me to deny myself for others and God.
• Someone who allows me to become the “me” that God intended.
• Someone who helps me become the “me” God sees in me.
• Someone whose life touches mine and leaves me better for it.
• Someone who touches my life and draws me closer to who God created me to be.
• Someone who helps me be like Christ.
• Someone who helps me love others more."

Okay, clearly these guys are Christians, and maybe I'm not looking for someone to blatantly Bible me into being a better person, but you get the idea.

You see, BJ's house was always a haven of refuge for me from my crazy home life. Even when I was "drifting into the world" as a teenager, I always felt unconditionally loved and accepted by her and her family. When I went away to SOULS, she expressed some concerns that I wasn't learning the whys and wherefores of things, but that I was conforming to peer pressure, and she was somewhat right. (She reminded me of this during our talk.)

In recent years (or year), however, it feels like... I dunno. It feels like I'm responsible for her emotional happiness and stability in some ways, though the cues are so subtle that I'd be hard pressed to put it into words. Honestly, I'm hard pressed to put any of this into words! I know, I know, me without words. Hard to believe, right? *sigh*

There are two driving issues here: one is my health, and the other is my spirituality/life choices.

BJ is a nurse, and somehow it feels like we always end up talking about my sicknesses, especially now that fibromyalgia has reared its ugly head. She can't seem to wrap her mind around why I'm so sick, and I keep getting those cliche phrases that I hate so much, such as "You're too young to be sick like this!" Today she mentioned multiple times that she doesn't understand why I got so ill so suddenly, why my health suddenly took such a nose dive. Heck, I don't understand it, either! It just happened. But I always, always get this creeping feeling like somehow it's my fault... like I did something or am not doing something right... but yesterday, she was so bold as to say that she thinks I got fibromyalgia because I left God. Wow. Really? Really? That's harsh, man.

The thing is, when I feel even subtly attacked, I find myself falling over myself to explain myself more and open up further depths of my soul to her, as if sharing more truth will somehow help her to understand and accept and stop blaming me and bringing out the guilt. (I wonder if her kids go through this, too?) It doesn't. It just complicates things further.

We were talking about my future as a massage therapist, and how C takes care of me so well, and I mentioned that there is a possibility that I may end up bedridden from fibromyalgia, as I know people in that boat. She immediately and vehemently protested this, insisting that I shouldn't focus on that, that I shouldn't even be considering or contemplating it. No matter how much I explained myself or insisted that I'm not choosing this outcome, but that it is indeed a reality that I must face and accept, she maintained her position that even acknowledging it is the same as choosing it, and I shouldn't even allow myself to think about that, and that I'm going to get better and that I'm underestimating what God can do... (as if he would heal me anyway, 'cause it's not like I haven't asked him a billion times before, back when we were on good terms, but I digress...) Basically, she completely dismissed my illness and insisted that I'm going to get over it. At least, that was my interpretation of the situation. As there are two sides to every story, I fully admit that I could have been completely misreading her.

I explained it like this-- if you have cancer, you have to face the fact that a possible outcome is death. That doesn't mean you're choosing it, or even that it's highly likely, but it's still a part of reality. She came back with a fiery and intense rebuttal of, "Only if you have terminal cancer is that the case. Any other kind of cancer, you have other options."

Look, it's not like I want to be this damn sick all the time. I miss hiking, and I miss cleaning my house. I miss doing more than two or three "things" in a day. (I struggled with fatigue already, but that was small potatoes compared to my life these days.) But I really, really resist the attempts to whitewash my reality and my future and exclude reality from my plans and my thoughts. She told me that I was spending too much time researching fibro online, basically saying that I was focusing on the negative aspects of my illness too much. Um, no. I get down in the mouth from time to time, but I'd like to think that I'm actually rather optimistic about being in severe pain every waking moment. I just felt so... dismissed. Invalidated. Disrespected, I guess. Like she was saying, "No, your interpretation of reality isn't correct. It's too pessimistic. Here, let me replace it with my own. This is the right one. Now, don't go back to your way of thinking! It'll only hurt you." I felt as though she was implying that, if I get sicker (or because I've gotten this sick in the first place, and because it came on so suddenly), that somehow it's my fault and that I was probably focusing too much on the negative and not wanting to get better well enough or something like that.

On that note, check out this funny cartoon! (One of my friends, M, showed it to me when I came home all distraught over my encounter with BJ, after I had explained the whole thing to them... or vented, more like.)

The second issue is my spirituality/life choices. I already mentioned how she thinks that I'm sick because I'm drifting from God, or at least that the two timings coincide quite suspiciously. (Because I got sick so suddenly, remember... because it's not like there are any illnesses out there with sudden onsets. Lord forbid I not be able to pinpoint the exact second I got ill and link it to a specific incident. Okay, sorry, sorry... sorry for the sarcasm.)

Basically, I'm not making choices with my life that she approves of, because I've left the path that she deems to be the path of life. She insists it's not about church, but that it's about God, but... I feel that the two are too synonymous in most people's minds to really make a difference. She's devastated because I'm living with my fiance before we're married, but the Bible doesn't say anything about that. The church does. I'm sure EGW probably does somewhere. But God doesn't. Sex before marriage? Yeah, there's stuff in there about that. I know that one, and I'm not going to go into my reasons for why I'm okay with it in certain situations right now. That's not what I need to talk about here. (Besides, there are other things that I'm okay with that God demands people be stoned for, so God and I... we have our differences above and beyond my anger issues with him.)

She told me that I broke her heart, just like her kids have broken her heart, because she/they (she and her husband) gave us everything, hoping that we'd learn to love the Lord and follow him but we've all walked away and she feels like a failure, and... also that I can never again break her heart or hurt her like I already have, because her heart is already broken so badly.

First of all, I resent being "gifted" with the ability to devastate someone like that with the choices that I'm making with my life. Do my choices affect others? Most definitely. Am I responsible for that? Partially yes, and partially no. Others (we're talking mature, responsible adults here, not dependents) also have a choice in how they will respond to my actions, whether they will let themselves be devastated by my choices or simply sad, maybe disappointed. I told her very clearly that I am not making rash decisions, that they are well thought out and wrestled with, and that I have total and complete peace within my own mind about the path that I'm pursuing. She hates that I'm marrying into atheism; I don't mind it. She says that it's going to affect me; I openly acknowledge that it already has, and I quietly acknowledge that I'm grateful for the dose of realism and cynicism. I stated that I am striving to live as authentic of a life as possible, and I am not interested in hiding who I am, where I am, and even why I am.

I just feel that, if I am not making the decisions she feels to be the right ones, then I'm a profound disappointment and I've crushed her soul. No one likes feeling that way, because it's not about my choices, it's about me and my self-worth. I am a disappointment, not my choices. I never, ever feel this way with my mom, with R, or with the S's. They have somehow mastered the art of loving, accepting, and enjoying me, even if they disagree with or are disappointed in the choices that I'm making. BJ has yet to learn this, and I begin to understand why I have felt this strange sense of alienation between her and her youngest son throughout the years. I didn't get why he had this strange, subtle resistance to his parents, especially his mom... but now I do. I feel it, too. You can't thrive in that kind of environment. It's stifling. Her mind is so closed that she can't comprehend that someone else's path might lie along a different track than the one she's taken. She found salvation such-and-such a way and in such-and-such a place; how could you possibly find it elsewhere? It doesn't exist. And if you are outside her understanding of "right", then you will break her heart. *sigh* I'm tired just thinking about it.

The thing is, as long as we kept things light and fluffy, we were fine. We enjoyed ourselves, and had a grand time. It's when things get beyond surface level that trouble brews. I realized last night that I have to draw some boundaries... I just can't let her in to the deeper parts of my life anymore.

I discussed this with C last night, and he told me that he was proud of me, and that I handled it well. I stood up for myself (I didn't go into all the details here, because they're not really important, but I did outline pretty much the whole conversation for him.), whereas a while back I would have quailed beneath her disapproval and cowtowed to her wishes. He pointed out that I'm much stronger than I used to be, even if I don't see it all the time.

Honestly, I am pretty proud of myself, too. I am a little daunted, though, by the task before me of setting boundaries with someone that I've been so open with for so long... but I have to. For both our sakes, I think.

Best part? In days past, I would have been so affected by her words that I would have doubted the decisions that I've made and begun the familiar dance of vacillation. This time, however... I never wavered. I know in my heart that I'm making the right decision for me, regardless of what anyone else thinks, and I'm going to go through with it.

That's not to say that our conversation didn't affect me, because it did. I went to the bathroom and cried. There were "a lot of feels", as my friends would put it. So many feels. Though I managed to tuck it away deep inside me for the duration of our day together, I was swirling in a muddle of torment that evening when I got home. I was able to talk about it with a couple of buddies and with C, so that made processing it a bit easier, and the emotions eased up as I realized what was really going on. I seem to always make the jump to assuming that I'm in the wrong. Always. If something's going on, it's probably my fault.

But the guys helped me to see that such is not always the case. As M pointed out, it seems that the situation was all about her-- her broken heart, her disappointment, the fact that she gave everything and I "betrayed her", so to speak... her confusion about my illness...

Everyone else agrees with me about the whole "facing reality and all the potential outcomes of my illness" situation, by the way. They feel that she is trying to avoid or alter reality... but really, do you blame her? Someone that she's loved and nurtured for over twenty years is suddenly super sick, and talking about how they may end up bedridden someday from this sickness. Wouldn't you panic, too? I mean, who wants that for anyone that they love? I can see why she would deny that possibility and insist that I focus only on the potential for healing. I can see that. I just don't think it's appropriate or helpful.

While I could see her concern and care for me and her sympathy for my pain in her actions throughout the day (not letting me lift things, being considerate of walking distances and having me wait at the front of stores so she could pick me up in the car),  I still don't feel that same support from her that I do from J, or from C, or from my mom, R, and the kids... or even from the guys, for that matter. I don't know what it is, but I just can't consider her to be a part of my support system. She supports me with her actions, but she tears me apart with her words. There is no verbal expression of sympathy or concern for my pain or illnesses, just sighs of sadness and, "Oh, C..." (which, of course, totally mimics disappointment and makes me feel like I've done something wrong in being sick...).

Okay. I'm done. I've waded through this enough. I love the woman, but she's not safe for me anymore. I have to close off that harbor and not anchor there any longer. I can sail through and visit, but I can't unload on the docks.

This is either going to be much, much harder than I think, or much easier than I'm anticipating. We'll see how it goes.

It's really amazing how important body fat is, especially in the face. When you see someone with no fat at all, you instinctively assume they're very, very ill.

In D's case, that's true. I've come to my own conclusions on the matter, after gleaning info from the girls and from C, and... I really don't expect him to live much past the wedding. He will not be able to attend, that much is clear (even in the state he's in now, he wouldn't be able to attend), and C will be staying with him. He should not be by himself in this state. Honestly... I'd give it two months. Max. I think that the wedding may be a time of deep joy, but also deep sorrow, as I think that D will be passing away about that time. I know the girls are planning to come down and play music for our wedding, but they may choose not to if D passes away. I understand, and I'll be planning back up music. The only major hitch in that is that my wedding coordinator is planning to travel down with them, and if they don't come she can't come, so I don't know what I'll do... probably hand the reins of the day off to Mom and/or D, who I'm sure will work beautifully in tandem. Mom will be walking me down the aisle, so D will probably take the bulk of the work... and I'll be there to help decorate and such... it's just making sure the ceremony and reception run smoothly, and the clean-up afterward. I'll make sure to talk to them and to H about this possibility.

I don't know when to talk to D seriously and say my "parting words"... I'm thinking about writing him a letter, because I do better in writing than I do just saying things... I'd give him the letter a day or two before I leave, to give him time to respond or bring up the topic if he wants. I need to tell him how much I love and appreciate him, and what he's meant to me as a father.

Good grief, I'm tearing up just thinking about this... Ugh! Stupid emotions! Go away!!!

Yesterday was interesting, but fun. I spent two plus hours wandering the local mall while K and C were in a bank setting up accounts for the two of them. The reason it took so long was that the bank lady walked K through every step of dealing with her account, so she would understand it all, and it went really well. I didn't mind. I ended up wandering into a jewelry store called Harry Ritchie's and talking to a saleslady with the same name as me! She cleaned my ring for free, and it looks like new :) Anyway, as we talked about wedding bands for C and how to customize a ring for him, she told me about the company and their policies and what they offer customers, and I was extremely impressed. They take great care of the people who buy from them and the jewelry they purchase, and I decided that's where I'm getting C's ring from. I ended up browsing the ladies' wedding sets as well, and fell in love with blue diamonds. I know C has an idea of the ring he wants to create for me, and he really wants to get me a diamond, so I want it to be blue. The color is phenomenal-- it reminds me a lot of a London Blue Topaz-- and they're cheaper than your standard clear diamonds.

While browsing the rings, I found one that I absolutely fell in love with. I mean, head over heels. I know, I know, C wants to create that certain ring for me that he's got in his head, but man... this ring was just... *sigh* I dunno. I can't find the exact one online, but I found a couple that look really similar, and one even has blue diamond accents! I'd want the center stone (which wasn't actually one whole stone, but a bunch of little ones that actually looked like one super-sparkly stone. I didn't notice it wasn't one stone until about 5 minutes into examining it!) to be a blue diamond, and the rest would be fine as regular white diamonds. Here she is:

It looks most like the top ring, but the diamonds were farther down the swirls, so it was metal swirls above and below with diamond accents on the sides. The center stone was bigger, though still round, and made up of a bunch of little diamonds, and I would want blue diamonds (see bottom ring). It had the little accent stones on the sides that were kinda triangular, and looked like little leaves. It was just so simple, dainty, and gorgeous... *sigh* I told C that I found a ring I love :) Though it is expensive (or at least seems so to me!), it isn't, as far as diamond rings go (and when you think about the fact that I'll be wearing it every day for the rest of my life, it kind of puts it in perspective), plus it's usually on sale, and they also have promotions where you can get money off of your purchase in addition to in-house financing. The only problem is that for the initial purchase and creation of the ring, you need to be in the store. After that, you can pay over the phone, but the purchase needs to be in person. Aaaaand, they're only a northwest store.

Oh darn. Guess that means I have to drag C up here ;) (Like I've been planning to...) I'm going to show him the ring online, and we'll see what he says about taking an ID trip sometime this or next year.

But I overdid it yesterday, what with doing yoga and running errands and walking the mall for a couple of hours, and then giving a massage on top of that... Oh, I am feeling it today! And I had coffee yesterday... bad girl, I know. I need to be good to myself... but I felt like being good to myself yesterday was allowing myself a treat. And it sure was delicious :)

I'll be seeing H later today, and we'll be going over wedding stuff... so excited! Last night, after errands were all finished, we ate supper and were going to watch a movie but couldn't get the tv working. Instead, we all sat around and talked, and it was really good. W, J's intended, was there, and I got to know him a little better. (He was the one I massaged, after all!) Of course, the topics turned to theology, but it was cool because D got really into the conversation, and it was like I could see the old D just shining through again. It was a good feeling.

Also, while at the mall, my friend L from this area called me, and we had a really good conversation. I have a few guy friends that I can have real good convos with, like JC, and L (to my surprise!) turned out to be one of them. We talked for a good 45 minutes before I had to go because I got another call. He told me all about how he met and married his wife, who is a total sweetie, and we talked about how I met and got together with C, and we talked theology and church, and we actually believe much the same way. It was a relief to know that I'm not the only one who's studied and had experiences and come to the same conclusions! It was interesting, too, because some of his comments about convos we've had in the past and conclusions he drew from them showed me that he is actually very, very insightful, and he's basically got me pegged, even though I didn't realize it :) I also realized that I give away a lot more of my inner life than I previously thought. I'm not as inscrutable as I think that I am. Alas. lol

So it's been good already, being here, and I'm very glad I came... no matter how difficult it is to see D this way. At first, I felt like the D I knew was already dead and gone, but last night showed me that he's still in there... buried under layers of suffering. I understand how that is in a lot of ways, because the fibro had me so beaten down with fatigue and pain at one point that I didn't even realize I wasn't myself until I got on the meds that have helped buoy me back up closer to normal. For D, though, there will be none of that. At this point, the only release he will have will be death... and I almost wish it upon him.

He's in so much pain... he's so sick... I don't like seeing him suffer so. I know he wants to hang on, which is why he wanted to try the chemo, because I mean, who wants to die? Of course he wants to stick around as long as possible, to see his girls get married, to spend as much time with his wife as possible, but... I mean... he's so sick. I almost wish he'd give up, if only for his sake.

And I feel like a total traitor writing that. It's one thing to wish your enemies dead, but to wish your loved ones dead? It's a strange, strange feeling, even if it is motivated by love.

Ugh. Ugh and Argh. I'm tired of fighting back tears, and I'm tired of crying, 'cause here I go again.

Damn. I knew this was gonna be hard, I just didn't know how hard. At least when Larry died a few years ago, it was sudden. There was nothing any of us could have done. I didn't get to say goodbye, but he didn't linger, and he was the happiest he'd ever been when he went.

I'm so glad I don't live here anymore. I'd be broken beyond repair. Even now, I feel myself cracking...

Oh D... I don't want you to go, and yet I don't want you to stay if it means you have to live like this...

This? This is... yeah. I'm fairly certain that this is hell.