I watched an anime with Corey last night that really tore me up. There's a stray cat that "adopts" one of the main characters and it's black and lovey and adorable little kitten thing, and through the few episodes it shows up you watch how it just adores this girl and she adores it and they're so happy together… and then it gets hit by a car, but it doesn't die right away. She finds it and it dies in her arms and she (and I) both basically lose it.

I thought I was over the loss of Bob and Cortes, but this silly cartoon brought back all of the grief as if it were totally fresh, and I have been mourning so HARD since then. One thing leads to another and I find myself grieving all the losses of my life at once, and I am paralyzed.

The really, really hard part is that if I had done just one thing differently, both might still be alive. With Cortes, I saw the puddle of antifreeze that had leaked out of Corey's truck before Cortes ever got to it, and I knew that I should sprinkle kitty litter over it to absorb the antifreeze so one of the cats wouldn't get hurt, but… I wasn't feeling well, and I was in pain, so I decided to leave it for later. I had the front door open to let in the lovely spring air, and that's how I saw Cortes lift his little face up and lick his mouth when he had lapped up most of that puddle of antifreeze. I didn't see him soon enough to stop him, but I had seen the puddle maybe an hour earlier and had chosen not to do anything about it, and he died because of my selfishness.

Then there's Bob Cat. He and I both grieved terribly for Cortes, he especially since they were litter mates and had never been separated. Bob had never been alone without his best friend before, and he would walk the house, crying for his brother. It was very distressing for both of us. He eventually got over it a little, as did I, but he didn't perk up entirely. I thought maybe he was still depressed, but he got a respiratory infection type thing and it lingered on for a few weeks. I took him to the vet to find out what was wrong, and it was discovered that Bob had feline leukemia, something he had probably contracted from some other cat in our neighborhood. I could have had him vaccinated, but I had chosen not to because we were struggling to pay for my medical bills already, and we didn't want to add vet bills on top of that. It's not an expensive vaccination, but I thought that I could gamble and win and thereby save money for my medical problems. My decision cost Bob his life. Both of the brothers lost, out of the blue. No warning. (Now I'm very paranoid whenever any of the cats seems to be looking a little run down or displays any kind of health problem.)

I miss my little babies. I raised them from newborns! They were my furry children and I miss them so much, and I hate myself so much for being so selfish that they died before they could even become full grown. My anger and my grief over my lovely babies of course brings up all of the feelings of loss and anger I've had to deal with over the past 5 years, and I feel like it's too much. I just want to lay down and not wake back up. I'm so tired, and I hurt so much.

I have been comforting myself with the knowledge that, had Bob and Cortes not died, I would never have gotten to experience the love and silly quirks of Fancy and Vladimir, both of whom I love deeply. They make me laugh often, and along with Juneaux I am often overwhelmed with their love and loyalty to me. I'm just afraid that I'm going to make a wrong choice somewhere along the line and lose one of them as well. Or worse, one of my people.

I'm just hurting. Hurting and worn down and tired and depressed and really, really frustrated all of the time. I feel like calling myself "princess warrior" is a stupid joke. There's nothing I'm dealing with that I can actually fight or change. I just try not to think about all of the crappyness, distracting myself with books or movies and such, but sometimes a memory or a feeling gets triggered and you just can't help yourself. Writing all this out makes me feel better, actually, along with the irrepressible and all consuming sobs and wailing.

I have some stuff for the weekend I need to get done. Hopefully it'll help distract me a bit, and I'll probably end up blasting some music that always makes me feel better while I work. Either that or I'll nap for a bit, THEN blast the music and work. I'd rather curl into a ball and just fade away, but I've already made promises, so… trudge on, I shall.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I don't even know where to start on this topic. Do you know how many times I've been so devastated, ticked off, and just gutted when I find out that a person or a couple is not, underneath, the image that they presented? I can't even count. So many, many, many times I've thought that I've found a healthy and happily married couple to look up to, only to find through the course of time that they are broken underneath-- bitter fighting, ugly resentments or cold silence and miles and miles of distance, if not outright abuse. The Stottlemyers and my grandparents are pretty much the only examples I have had of functioning marriages, and I didn't even realize that my grandparents' relationship was all that healthy until very recent years.

So get this-- in our circle of friends, Corey and I are the example, the Westley and the Buttercup, the happy, healthy, functioning marriage. And it's true. It is. Or, at least, it was… because how do you admit to yourself that you're not happy with where things are at in your marriage, much less bring it up to your partner? But that's exactly what I did this weekend, and I feel good about it. We're talking, our communication is still wide open and blazing, and it's not like we're going to split up at all or anything. It's just… there's this distance. And there's these walls. There isn't sex anymore, or purposeless flirting… intimacy has fled, of a sort. I feel like we're just roommates at this point in so many ways, but I still love him on a very fundamental level and it still sweeps me away all the time. I know he still loves me and it shines through. (In more subtle ways than I'd like, but it's there. It's definitely there.) Plus he says it at least once a day, so there's that. Heh.

The times we've talked about it ("it" being the change in our relationship), it's basically presented as the set of diseases I have and the stress of all that is like a big ball of blah that has settled upon us and is glopping all over us like The Blob. What Corey hates the most is what these diseases have done to me. He hates seeing the change, the loss of independence, and he also kinda feels that maybe I'm a different person now than the person he married and he thinks he should feel bad about feeling that, like maybe he shouldn't feel that way, and the biggest thing is that he tries to keep all of this from me because he knows that I internalize things more than I ought to because of my upbringing and background. He thinks that I would take what he says and blame myself severely, and he doesn't want me to endure that kind of pain or to poison my mind and heart like that. He is so sure that I will blame myself and over-feel it and get depressed or so; it's sweet that he wants to protect me, but it is distancing us.

So I almost feel like I've become what I despise-- the so called healthy, happy marriage that is just a veneer for trouble underneath. I know that things aren't where either of us would like them to be, but they're not abysmal, either. It's very true, the incredible stress that chronic illness brings can break you down and tear you apart, but we are not going anywhere. Things are hard-- not only do we have the diseases and my disability and constant medical stuff to deal with, in addition to the day in, day out symptoms-- but we have major financial stress to battle with as well. I'm just super glad that we don't have debt to deal with beyond a credit card each and whatever outstanding medical bills I've got right now. It's just that my medical expenses totally ate up Corey's extra cushion money and now we're living paycheck to paycheck, hand to mouth. It's like every time he's about to even out, something comes along that screws everything up and takes all of the potential extra money (which is never more than one or two hundred dollars).

True story: I emailed my stepdad last week and begged him for money (again) to cover medical bills and such, as usual, but I also had to ask him for grocery money because Corey had paid the mortgage and all of our other bills-- we don't have anything on the docket that is extraneous, nothing indulgent, just basic life necessities-- and he had $11 in his bank account to last us 1 1/2 weeks until his next paycheck. I believe that's the lowest we've hit so far, honestly, but it was truly unnerving. I'm not sure I know the meaning of "disposable income" anymore. From time to time I'm still able to sneak a treat in for myself here and there, but it's in the form of a $2 muffin or a new bottle of nail polish, something like that. Corey operates like that as well, but he indulges far less often. We just need an edge of some sort, just something to help us get ahead and we could do it; I know we could. That's why we are hoping so hard that I get approved for disability-- it could be that edge, that little thing that turns things around for us. I was excited when I established the Tiara Fund and donations came trickling in, but that has completely dried up no matter how much I share the link. I really did think for a minute there that the Tiara Fund was going to be the thing that turned it around for us.

I won't lie-- our life is really frickin' stressful, and I know that's why we have faded to a facade, our vibrancy dulled by the cruel, grinding rhythm of sickness and hardship. I'd like to get help for us, but where do you turn when you are the healthiest relationship you know, even if you're kinda broken? And chronic illness issues within a marriage are so, so different from other kinds of issues. I don't know what to do. I really don't. I guess all we can do is keep the communication open, keep talking, and just hang on for dear life. I'm beginning to think that I've perfected the death grip, really, but I know with a sickening lurch to my gut that just as soon as I think things have gotten as bad as they will… shit happens. I've got doctor's appointments coming up to hopefully diagnose the extra stuff beyond fibromyalgia that I'm dealing with, and I have a cold feeling of dread that I won't like the answers that I get. But then, I feel that way about everything related to my health these days anyway…

I don't want to be a facade. I really, really don't, and as a person I think I've accomplished a marvelous level of authenticity so far (considering where I've come from and the shit I've had to wade through to get here), but as a couple… yeah, I think that for now it's all about the death grip.

I really need to have sex with my husband. Not just want, although that's definitely a factor, but need. The problem is… we're not exactly having sex these days, at least not on a regular basis.

It came up in a talk we had as we drove back from the pain doctor last week. I am regularly flirting with him, throwing out double entendres and dirty jokes, making sure to touch him and get Physical Touch in there, and I get chuckles out of him and sometimes a bit of reciprocating physical affection, but more often than not it's just a verbal acknowledgment of the joke and an implied rejection in the silence that follows. Sometimes I get an overt rejection, and rarely rarely rarely does he actually take me up on the offer.

I mean, I get why this is. His reasons are perfectly valid and acceptable, but that doesn't lessen the sting of rejection or the cumulative hunger and longing. It's stress, you see. Our life is super mega stressful right now because of the finances and my physical ailments, and it's been building and building and no matter what we do it just seems to keep piling up around us like a big, invisible grave and I just want to scream because it's just so hard. I feel like I can do anything, take on any challenge, with Drogo by my side, but the stress is eating away at him and burying him deep in soft, suffocating layers and I just don't know how much by my side he is anymore.

I'm a very sexual creature. I am, and I own that. (It's remarkable to be able to say that without shame; something I would never have been able to do a year or more ago!) It keeps me feeling emotionally connected, it relieves stress, it fights pain, and it regulates my mood and keeps me some above the incessant swirling blackness of depression. Being celibate on my terms is one thing, but this enforced dry spell? I'm not handling it well. He said that stress has killed his libido, and okay, that's valid. That's legitimate. But it hasn't killed mine, at least not entirely. Granted, I don't want to have sex as much as I did anymore. I just don't have the energy, I'm usually feeling crappy, and I just… don't. But I have never, ever turned him away when he makes advances. I know that if I give it a minute or two I'll get into it and want to proceed, and sure enough, that's what happens. It's just… you can only be turned down so often before it's just not even worth trying anymore.

I'm constantly flirting, trying to initiate… and now I understand the stories told by men with frigid wives, wives who have lost interest or gotten too busy and distracted with the family. I so get it now. The awful part? The awful part is that I know specifically several men and women who would jump into bed with me if I so much as gave half a consent. I can name them, count them on my fingers right now, but the only thing stopping me is loyalty and love to my husband. It just… it hurts, you know? I know it's not about me, but after a while you just kind of start to wonder, is it me? Do you even want to be in this marriage with me? Why am I so undesirable to you? How can I be such a hot commodity to everyone else, but you won't give me the time of day? And I can't… I can't do that anymore. So I guess I'm going to stop trying. What's the point? It only ever works when he feels in the mood anyway, so why bother? I'm so tired of getting turned down, turned away. Take your stress and leave me the hell alone.

…he doesn't even cuddle me anymore. The loving byplay of yesteryear is gone, and I am so achingly empty and alone. He knows how I feel-- I've not been secretive about this--but I suppose he feels as helpless as I do. He understands it, too. His comments and conversation on the topic makes that blatantly clear. But I just want to feel loved again… I know he loves me-- he says so. (Usually after I've said it first.) But I don't feel it. I feel like a nuisance, a burden, a more or less welcome roommate, an expensive pet maybe. No, he cuddles and caresses the cats more than he does me, so I don't even rank that high.

It hurts. It just hurts. And I don't know how to fix it except to fix myself and get better so there won't be any more crazy bills and not enough money in a paycheck for our basic necessities plus my medical needs and he won't withdraw every night into his man cave and while away the hours not thinking, not feeling, until he climbs into bed and falls asleep.

I know he loves me. But why can't he suck it up and show me? I want that more than anything in the world right now.

Update-- After posting this, I went ahead and succumbed to my grief and the body wracking sobs, though I tried to keep it mostly quiet. Somehow, Drogo has this freaky, uncanny talent of knowing 99% of the time when I'm crying and where I'm at, and today was no exception. I was just picking up my laptop again to edit the phrasing on some of the words (can't even remember now…) when he came into the room, laid down just behind me, and wrapped me up in a big, spooning embrace. That, of course, made me lose it even further, but I feel like I did a good job pretending that I was unaffected, even if he could completely see right through it. At first I thought that he was going to bed but it was much too early for that, so when I guessed/asked about it he answered wryly but truthfully.

As we lay there, ensconced in one another's arms, I found my courage and slowly spoke of most of what I'd written here, not even bothering to change the words. a.) I found them in the first place and I can re-use them if I so desire, b.) they applied so perfectly to the present situation.

Anyway, he vowed that he would be more affectionate with me, said that sometimes he forgets I need the touchy feelies so much. I really appreciated that (still do), and the conversation was quite productive. I feel much more loved, and in fact he answered one of my questions with a surprising yet pretty much protected wet boy. He retreats into his man cave and immerses himself in a fantasy world (whether it's games with the guys, anime, stumbling websites, etc.) partly because he just doesn't like seeing me sick all of the time. Who does? I reframed the question for myself, trying to imagine Drogo in my place and mine in his, and I can honestly say that I have zero confidence that I would not immediately do the same. I would hate to see Drogo sick day in and day out, being helpless to do a damn thing about it, and feeling like a big and clumsy oaf if I try to help him with day to day tasks. No, I completely understand why he does as he does, or at least well enough, but that doesn't lessen the sting or sort out the snarl of emotions.

I'm optimistic about the future. When he realizes there's a problem and says he's going to do something about it, he damn well does it. I don't expect to get more sex, and honestly this wasn't a ploy for more. If I can't get it without resorting to cheap parlor tricks and frosted glass bottles, then I can do without. I'm just really happy that he understands that this is a big deal for me and wants to make it better. I love that man. Oh, and he says that he loves me "lots and lots" :)

**Author's note: One of the new/aggravated symptoms I'm dealing with is, for lack of a better term, short term memory loss. I believe I can attribute this to the pain medication I'm on, but it does make for some interesting experiences. This post, for example, was written while I was literally falling asleep at the keyboard. It was totally coherent and even eloquent to me at the time, because I knew what I was trying to convey. The next day, when I realized that I had written a post (because I'd forgotten that I had, actually!) I came over to read it because, naturally, I couldn't remember what I'd written. I found it to be… not quite as lucid as I had thought it was. Apologies. If you can muddle through this and make sense of it, I just may hire you to be my FibroFog Interpreter. I didn't want to delete this, though, because I mean… it's my writing. A piece of myself, coherent or not. So, here it shall remain, if only as a testament to "this is your brain on drugs".**

I'm given to understand that there are many "steps" when it comes to acceptance and grieving of a chronic illness. It may not immediately seem clear as to why someone would need to "grieve" when they're clearly still alive. I mean, grieving is for when people die or you break up or something, when a relationship is lost… right? Right. However, unless you've encountered it yourself, seen it in the life of someone you know (to whatever degree of closeness), or have just thought about it quite intently, it's unlikely that anyone would understand the phenomenal amount of loss involved with a chronic illness diagnosis and the life after the diagnosis. I spoke of death just now; in a very real sense, a diagnosis of a chronic illness is both the death knell for the "old life" and the harsh squall of the newborn as a "new life" unfolds before the patient. Due to the completely unpredictable and generally misunderstood nature of chronic illnesses, though, many times that life unfolds only minutes at a time. There are no grand, sweeping vista of plans and ambitions or sweet, sleepy forests of peaceful routine followed decade by decade.

The landscape of the chronically ill and the average healthy citizen can appear deceptively similar to the casual observer. Often, the land of the ill is surveyed with a passing glance and dismissed with a nonchalant, "you don't look sick!" After all, the sun still speckles brightly along warm earth paths of smiles and laughter, mountains of various sizes and relative distances are scattered through the view, and always, always, the loud gushing streams of cool forward momentum and purpose weave and twist their way in and out of both expected and unanticipated settings. Look closer, though, and you will see troubling changes that stir up an unease within, changes that make you want to run for your life lest you be contaminated as well and your own precious world poisoned.

The straight furrows of garden plots are worn and cracked, dry with fatigue yet managing to bring forth a feeble crop. The cheerful cottages, clearly once a source of pride and sustained labor, now seem to troop sadly across verdant meadows bare of livestock. Lush banks of flowers cover crumbling masonry and low, stooped walls, draping the entire panorama in a rippling, delicate gown of every hue imaginable. The colors are a riot, but blend together to create the most intricate and exquisite of tapestries; every bloom is perfectly placed, from the single frothy Queen Anne's Lace to the tightly bunched carpet of creeping phlox, and what could have been hills barren and uneven becomes a spectacular faceted gem of pure joy.

The chronic illness world can be a harsh, ugly place. The cottages and relationships that we have so carefully labored over and constructed with our own hands through years and years of work, they often fall into some state of disrepair. Those who live in the cottages can do some of the upkeep themselves, but the true purpose of the cottages demands a synchronistic cooperation in order to truly thrive. Beyond the cottages, the near-empty fields mutely allude to the loss of hobby and gainful employment. The sweet silence of the air brings a sharp contrast to the usual sounds of looms clacking, animal noises, children squealing and squabbling; the normal sounds of a busy life have been replaced with a hollow, pealing silence that resonates down to the very bones.

The flowers though; ah, the flowers. The flowers make it all bearable, if not tolerable. The origin is unknown except to the owner of the valley, but such a rich and varied selection is found but rarely outside the landscape belonging to the chronically ill. It seems that the soil of normal lives just does not cultivate the proper atmosphere or soil in order for the plants to grow to their fullest and most luxurious. Well-groomed flower gardens can be seen among the graceful landscaping of nature itself where people have taken to cultivating particular joys and gratitudes, while others appear to be content to take theirs wild and unsolicited.

In my mind's eye, my landscape looks much like north central Idaho, or perhaps western Montana. It is rugged and choppy, coated with mountains and sheer cliffs and whitewater rivers dashing themselves ever downward. It is sparsely populated, and those that are there tend to keep to themselves and be self-sufficient-- no coddling these cottages. Practicality reigns supreme, yet nature itself inspires a veneer of beauty to soften the edges and uplift the heart. Those same rugged mountains are swathed in dark evergreen forest, underlaid with countless varieties of bush and berry and other barks. The seasons change, time inexorably marches on, and even the death that time inevitably brings wears naught but a thin, shimmering mantle, spinning and flaring in the sudden colors of Fall before the cloak is thrown aside and the naked white bones of the world come to the fore of collective consciousness.

The landscape of my illness is part beauty, part blight. Pockmarked scabs of raw gashes in the earth can be found mere steps from a tranquil, dainty pond embroidered with ferns and sweet puffing breezes. I can always find flowers to sustain me, even if it's just one, but the wanton loss, destruction, and waste that I see around me as my world crumbles… it sears my soul with a thousand putrid colors that I dare not do anything with but swallow. Every day is another Pandora's box: the lid is cracked open by morning light, the evils escape and howl through the welkin to begin their outrage anew, and Pandora slams the lid shut tight, having only hope left to herself.

The thoughts and feelings of such a continuous cycle of dismay and disappointment take a heavy toll, and the words do not come easy. They boil and roll around inside of my head and my heart, percolating all the way down to my fingertips… but at the last minute my heavy heart shakes her head and says it's too much, too much, and we're all (all of us pieces parts together) too tired to argue so we cover our eyes and turn slightly to the left, hoping that the results will scatter in the sweetly sweeping breeze. They never do, and I grow heavier and heavier as I wait for the words to finally squeeze themselves from my very pores and splash across the page. I wait for the words to write themselves, to unwrap the weighted intensity of themselves and float out into the world, because I don't understand them while they are inside of me, not really, and if I can read what they have to say about themselves then I just might be able to make some sense out of all of this. My landscape is beautiful, in its own way, but it is also terribly confusing and wickedly deceptive, and I am afraid that someday I may drown in my own confidence.

I finally pulled out my chalks and created something, though it wasn't what I expected to come out. I kind of expected an abstract, but a stylized representation of me, asleep, and nightmares creeping in is what came out. I've been dealing with a lot of nightmares in the past few days, horrible dreams where the ones I love are hurting and people are in pain and there's nothing I can do about it. Many of them involved injury, death, violence, bad people, and inexplicable series of events. Due to the constraints of my illness I can't resist the sleepiness that overcomes me, but I don't like to be there because I wake up aching on the inside and out. Sleep used to be my refuge, but it's become a war zone of late. I hope this is just a phase that passes quickly. It's probably the subconscious workings out of my tortured body and mind, the considerations of the future that terrify me and the thought that "ending it all" might not be so bad except for the pain it would inflict on others. I guess it comes down to the question of how selfish I am. Can I stand to offload all my pain and suffering onto those I love to gain a surcease from my own constant torture? Unfortunately for me, I am not inherently that selfish, but I can't say what rash decisions I might make in the throes of agony. You've been warned.

Rose and I have plans to meet up for a few hours tomorrow during the Celebirthsary weekend that Drogo and I have planned. She's out west for spring break and I'm up north for those two days, so what's the harm in going a few hours more northward to see my bestie? No harm; none at all. I'm SO excited. We've only seen each other for a few hours in the past two years, and though I love her mom dearly she kind of put a damper on our last reunion and it wasn't possible to just sit and gossip over a chick flick like we would ordinarily have done. I was happy just to see her, of course, but I'm looking forward to our reunion amidst the pines and fresh mountain air of the bible college we both attended and were roomies at. We were discussing the rejuvenating effect the wilderness has on us, and how we both come alive when we're able to go out and explore and adventure and just wander… and I guess that conversation brought home the thoughts that have been percolating in my head for some time. The sense of loss when I realize that I can't join her in a merry hike amidst the trees like I want to. Remembering that I have to be sure to pack my pain pills and my other meds and my walker and the footstool set up for my walker so that Drogo can push me when I am too tired/hurt too much to walk anymore. The reality of my situation crashing home, once again.

When I was told that I am dealing with "just" fibromyalgia and not any autoimmune disease of any sort, it was a brutal shock for me. I didn't think that it was possible for "just" fibromyalgia to so drastically affect someone's life, health, and well being in this manner. I was positive that there was something behind the scenes aggravating and inflaming the fibromyalgia symptoms. There had to be something else, something treatable, so that when we found it and started working on it the fibromyalgia would recede as well. That was my working hypothesis. It turned out to be false (unless there's something neurological at play here, which the twitchies would suggest, but who the hell knows anymore?), and now I have to face the reality that it's "just" fibromyalgia, something that is not taken seriously in many cases and places… and something that I didn't really take seriously, in all honesty. But now I have to face the facts, and that includes the fact that my misery is due in large part to fibromyalgia, a little understood neuro-immunological disease/syndrome, and none of the treatments for fibro have improved my situation at all. I've simply continued to worsen. When I learned that it was "just" fibro, the horrible  reality that came crashing home was this: I've had active fibro for about a year and a half, during which I have not responded to any treatments and have worsened dramatically. If I'm looking forward to years and years of this, if the progression continues on the same scale that it has in this past year and a half… will I even be able to walk by the time I'm thirty? How much pain will I be in by then?

There are certain expectations that I have, unless something dramatically improves, certain things I've had to grieve and come to terms with… that I'm still coming to terms with…

I cannot have a family. I can barely take care of myself, and I'm not so good at that, so a baby is out of the question right now. If I were to get pregnant and if I could carry the baby to term (something I've been unable to do so far), I would have to be off of all my medicines, including pain killers. How sick would I be, how much agony would I be in, and how would that affect the development of my baby? The emotions and state of mind of the mother affect the baby, as those things result in chemical secretions. I want to be a mom, to have a family… I broke down crying the other night, and while Khal Drogo was comforting me I sobbed my apology to him that I cannot provide him with a family like he wants. It's something we both wanted, part of our shared vision for our union and our future… and right now it doesn't look like it is going to happen. Maybe if I get some better, and my friend acts as a surrogate like she volunteered to do… maybe I can have a family in the future. We were going to wait several years anyway, to get financially stable and make sure that we can actually take care of any children we might have. No going into debt unless emergency dictates so, or strategic financial planning.

I would be a kickass mom. I so would. I have a strong maternal instinct, kids just gravitate to me, and I practically raised my siblings when I was far too young to have to do so. Did you know that one of my nicknames up north was Mother Goose because of how the kids flocked to me? It makes me smile every time. I love kids. I want to have kids. I want to be a mother, and it kills me that I can't seem to carry my own and that right now it looks like I won't be well enough to care for a family. How fair would it be to bring a child into the world when I can't adequately care for them? Not fair at all. I don't want to disadvantage my babies that way. I dunno. We'll see. I still refuse to believe that I'll never be a mother, and the timing isn't right for a family right now anyway. So this one is on hold. It's far too painful to believe willy nilly.

Okay, here's another one: hiking. I miss being active; long walks at night, day hikes, backpacking trips, just being out and about without paying for it for the next few days. I miss going on adventures, challenging myself physically… Hell, I miss cleaning my house. I miss being able to do stuff myself, instead of relying on others for assistance. It is so infuriating to have to wait for someone else to get around to doing what I would be able to do seven times over in the time it takes them to get around to it (because people have their own lives), and I could do it so much better than them to boot. I have such good intentions of just gritting my teeth and doing a little bit at a time of the things I want to get done… but when the time comes I'm just so tired and nauseous and dizzy and I hurt and I just don't want to do it. It's like trying to function with a really bad flu, and it sucks.

I miss being independent. I am so reliant on other people and it kills me. I used to be the one that did things, that took care of other people, that made things happen… and now what? Now I don't. Here's another one: working. I miss my work as an admin assistant/office manager and peer support group leader and advocate. I miss being able to contribute to the home financially, but more than that I miss being able to make a positive contribution to the world around me, to my community, to the lives of broken girls and women. I miss giving. If life were fair, I'd be able to receive just as much as I gave, but that's kind of in short supply… there are a few key people who help out as they can, but for the most part I feel pretty abandoned. It's like, if you can't do anything for people then you get pushed to the back of the list. I can't claim that I didn't do the very same when I was still capable; I can't remember. And that's just the thing… I get forgotten. Left out. Left behind. I'm needy now, and an awkward burden to carry. I would love to say that I don't blame people for it, but the truth is that I'm super bitter about how little help I get even when I ask, which is a hard thing for me to do. I did find a friend that has committed to helping me clean and cook for a few hours every Saturday, but I'm skeptical as to whether that'll last or not. It's not exactly thrilling, sweeping floors as I hobble around helping where I can. I notice that people tend to not like being around a young person that's ill and un-fixable. It reminds them of their mortality, how misfortune can strike at any time and any age, and that's just a plain ol' downer.

I have to air this out, but only this once because I feel really ungrateful and like a jerk for even having an issue like this… but I'm really ticked about my birthday party. It was so much fun and I had a blast and I was so happy to have so many of my friends over… but so many of the people I invited didn't come. The ones who did show up are the ones that are the most consistent ones in my life, the ones who show up even when there's not cake. But the ones who didn't? They're the ones who claim to love me and we were close, once, for the most part… but they couldn't even be bothered to come to ONE thing? I don't ask for much, I don't think, but this was really important to me. I don't get much of a chance to have a happy, fun day. Most of my days are pretty flat and painful, sprinkled through with little things that make me smile. I have to hunt for them, though. See, about the people who didn't come… every person who bothered to make an excuse had a good one… but they all had excuses and didn't/couldn't come… and that hurt. A lot. Just another example of being shut out, left behind, and forgotten. Ouch. I'm also upset that I had to throw myself a birthday party. Like the logic doesn't even work-- everyone knows that I'm really sick and have a hard time with basic life, but it's left to the girl who hasn't even been cooking because it's too much to plan and execute a party. People knew I wanted a party, but as the saying goes, "If you want something done, you have to do it yourself." Not only did the sick girl have to make her own party happen, but the majority of people didn't even come to the thing that took so much effort and destroyed me for days upon days. Not cool, yo. Not cool.

I'm terrified that it's all in my head, and my limitations are self-imposed. I don't deny the physical aspects of this illness, not at all. But I am afraid that my "can'ts" aren't derived from past experience like I believe them to be but are rather mental constructs sprung up from who knows where. Maybe if I just tried harder I'd find that I really am not as crippled/disabled/sick as I thought? Maybe I just need to push myself more.

I guess I could go on, but the gist of this thing is that I'm reeling. Not only is there not something treatable lurking in the background, but this thing that I have has not responded to any treatments in the past or present. My year long sabbatical from the Healing Journey to get better? It's probably a permanent thing. My whole attitude of "just wait until I get better and then I'm gonna _______" is pointless, because there's not a "get better" phase to this disease that I can tell. I'm stuck like this, stuck like this forever… and I'm only 26. How many more years of untold suffering await me? I can't really think about that because it sends me spiraling into a panic attack, and do you blame me? Maybe you haven't seen my pain blog (which I only update sporadically now, because none of the doctors ever look at it so what's the frickin point?), but it's a dismal portrait. That… for the rest of my life… and likely to get worse. 

I need people. I need people to do random acts of kindness, to help with basic life activities, to listen to me vent, to throw me parties and buy me Arizona green teas and encourage me to exercise (and help me with it!) and all that jazz. I need people but I feel like I'm standing in this great void where my friends used to be. I do have some very strong supporters… but they live hundreds and thousands of miles away. They play an important role, to be sure, but I need people here. That's the part of my support system that's sadly lacking. I know, I know… people don't want to overextend me and make me sick or interrupt my naps or impose when I'm feeling poorly… I've heard that from my grandparents several times. Here's the thing, though… I don't feel good. Like, ever. Once in a blue moon, but it doesn't last long. If you're waiting for me to feel better before you interact with me, it's never gonna come. That's why I need you. I need help. I need love. I need friends, and I can't come to you. Can you understand that? Do you know what it's like to see your car out the window and know that it's just not safe for you to drive, to know that you're as stranded at home as if you had no vehicle at all? It's awful. I'm stuck here, and unless people come to me I don't see anyone. I'm that crazy old shut in lady at the end of the street, and I haven't even hit thirty yet.

"Just" fibro. "Just" a life sentence of pain, sickness, isolation, and the fight against depression.

Can you comprehend what it's like to know that your life is over at 26? The life I had planned is gone. It's like I died. Cassandra is dead, and I don't even know who I am anymore or what I can/want to do with my life. I was going to be a massage therapist. I was going to visit all 50 states, to travel overseas and try different foods and see art museums and antiquated buildings. I was going to have a family, have children. I was going to be a licensed peer support specialist, a licensed suicide prevention… person. (What are they called? Brain fog.) I was going to be the office manager for the HJ's new location, be the other half of the organization's head even more than I was before. I was going to hike all the way to Telegraph Pass. I was going to backpack from one rim of the Grand Canyon to the other. I was going to go to Alaska and hike in Denali Park. I was going to raise a garden in my backyard. I was going to unpack and organize my fucking craft room! There is so much that makes up Cassandra, so many dreams and ambitions and tightly held hopes… and they're all rendered pointless or impossible now. Maybe after some time has gone by and I've grieved appropriately I will challenge that word "impossible", but for now… the reality that I've been handed is very bitter, and I'm not sure how to handle it. I want to go hiking with my Desert Rose tomorrow, but I know that's not going to happen. I will feast upon her cinnamon rolls because gluten is a thing that's happening in my life again, and I am incredibly grateful for this (even if I am slightly allergic to wheat). It's so nice to have real baked goods again, and I've never gotten to taste Rose's baking. That's one dream that I can fulfill, at least.

Goodbye, Cassandra. Hello… whoever you are. Strong, fierce, stubborn, broken, sad, implausibly hopeful, beautiful, giving, intelligent (despite the brain fog), creative, flexible, sexy, hilarious, needy, angry, still standing despite it all. I feel empty inside from the wrenching away of my future, but I still have good things swirling around the ragged edges. The gaping, cavernous wound will heal with time, I'm sure, but for now… it hurts.

Well as it turns out, I didn't need to blog through my thoughts about what's going down with my honey. I just needed a good listening ear, sympathetic pats on the arm, and some words of sense that, yes, I already knew but needed to hear from another person. Most of my issues had to do with my being sicker than ever and wanting/needing more support from C in that regard. Mostly because I'm terrified and scared and lonely and overwhelmed. He stepped up admirably, and some solutions have been put forth that I find most satisfactory. Probably more on that later.

Also, the two M's are both making plans to vacate the premises within the next 6 months-ish. I am not pleased about this. However happy I am that they are moving on with their lives and getting out of this dead end town and pursuing their dreams and yada yada yada… I'm an inherently selfish person, and they are like, 8/10 of my support network here. They are, generally speaking, my rides places, my listening ears, my open hearts and arms, my dose of laughter when I don't feel like laughing and definitely when I do, my bawdy joke bandy-ers, and quest companions to both C and I in DnD and Magic. Whatever will I do without them? Just the thought makes me wilt inside. *sigh* But just because I'm settled here, likely for life, doesn't mean that others have to be chained here to suit my needs. It's just… why do all my good friends have to be at a distance?! J is all the way across the country, J and K and H are a full 24 hours' drive north, and the C family is hours north even of them… J and R are a state east of my family up north, my mom and the kids are all the way across the country as well, L is as far across the country as you can get from here (and is stealing M from me, that bitch! Kidding.), and E is too busy to come see me at all. If I'm not working with her I just don't see her, and we all know I don't leave the house any more.

My life is lonely. So lonely. That's part of what I was having problems with with C, is the sheer loneliness of my existence. Well, not the loneliness, but the inescapability of it all. He can comfort me and then go off and play games with B or D on the comp, but I'm stuck feeling awful. All day. Every day. It traps me, pins me to the couch or the bed, and there's nothing I can do about it that I'm not already doing. And who wants to ask people to come spend time with that?

How do I make new friends when these ones leave? They are taking pieces of my heart… but how do I find new people to fill the voids they will leave behind? It's not so simple for someone who is house bound, bed bound… Yes, I have my internet friends, but sometimes you just need someone to come over and be here with you, like M was for me last night. I'm happy for them, I really am, but I feel terribly selfish that this constitutes a personal crisis on my end of things.

Why do I have to be so all alone?

I guess it's a pity party. Why me? What did I ever do to deserve this? And I'm terrified, y'all. I'm so, so, so scared that this is my life, forever, for always… that I'll never get to really live life, not the way that I had always intended to. I won't get to travel. I won't get to work. I won't get to help people. I won't get to perform music. I won't get to raise a family. All of the talents and skills that I have are going to waste. My potential is withering like a sick plant because the body it is rooted in is inhospitable, toxic.

I realized the other day that, if I die (whether it's from natural causes, foul play, an accident, or by my own hand), C will be totally lost. It will destroy him. Do you know what it's like to basically be someone's reason for living? It's incredibly flattering, and it fills you with a sense of self-worth like none other. I mean, I'm his reason for living in a totally healthy kind of way, as in I'm his "true love" and I fill his life with meaning and joy, etc. etc. But I also feel bad because what kind of a life can I give him when I'm broken like this? He deserves so much more… Hell, I deserve so much more. We've had to deal with more in our first year of marriage than most people do in ten. I may be what gives his life meaning and dimension, as would the family that we someday hope to create, but… he kind of got gipped, I think.

I'm sorry. It just hits me sometimes… how sad I am about everything. I mean, I am such a bright, talented young woman. I am. But it seems like every single thing that I was, that I was capable of, is being systematically stripped away by this cocktail of sicknesses. My mental capacity and acuity that I was so proud of is falling by the wayside as forgetfulness and cognitive fog dominate my mental landscape. Often I have conversations of late that, later, I cannot tell whether they were reality or a dream unless there is some physical marker or transcript left behind. My vocabulary and spelling has taken a sharp decline, and I frequently struggle to find the "right" word, one that I know very well but cannot seem to access. I lose the names for commonplace things and events. The events of my own past are shrouded in mystery, lost to the gaping, fuzzy holes that have sprouted in my memory banks. It feels like my brain is made of swiss cheese. M remembers more about my life than I do because I've blogged it and he's read every single post, plus the events that he's actually been there for. J remembers more about my SOULS years than I do, more about our conversations… it's just frustrating to feel like a spectator to your own life.

All the things that I considered to be me… they're gone. Inaccessible. Stripped away, dulled down, tattered fragments. Who am I? What's the use of my even being here? At least I can still write, most of the time. My hands aren't that bad, not on a consistent basis. (Am I jinxing myself here? Ugh.)

It's just… it's just a pity party. An identity crisis. A sadness at losing two of my best friends to distance and the inevitable increase in isolation that will come with it.

On a completely different and random note, I watched Frozen yesterday, and it. is. awesome. A must-see. It's more musical than I expected, but it's very well done. Some of the songs get stuck in your head very firmly, such as "Let It Go". It's a short number, but powerful. I really like it. Here's the original song, and then here's The Piano Guys' interpretation of it, which is equally amazing.

So there's a lot of shiznit going down right now. Health problems, per the usual. I'm a bit concerned as to why my bones are so tender and why they burn. I don't think that's exactly a normal thing. My skin is pulling that "burning" trick to, and I don't like it, not to mention the chest pains and the random arm/leg/hand/foot numbness that's been hitting me. And the dizziness. That too.

Every time I take another plunge downward I comfort myself with the hopes that maybe this is just a temporary flare and I'm going to bounce back out of it and retain the level of "health" that I had a day/week/month ago. I think it's time to stop deluding myself. I've taken another very large step towards being completely disabled (yay pain!), and it's not gonna reverse itself without some medical intervention. Yes, still trying to figure all that out… I hope I don't end up a vegetable before that happens. My mom thinks I ought to be screened for various kinds of cancer. I can't say that I disagree with her.

Speaking of cancer… my friend is dying. My friend, the Chemo Princess, has been battling cancer for the past four years and is now going into hospice care. This is the woman that inspired me with the strength I needed to accept the newfound reality of being a fibromite somewhere over a year and a half ago. She is the one that has inspired me to find the beauty still abundant in my life and to sparkle, shine, and fight tooth and nail through these health problems. She's just so… uniquely herself. I've always been in awe of that aspect of her. I mean, I've known her since I was a kid. It was her wedding photos that made me want to get married in a meadow, which she and her husband did… in garb, I might add. He's a really cool, quirky guy too; an artist. He and his junk/jug band, Deep Fried Pickle Project, have sung some really funny songs. My favorite is "Don't Drink The Juice At The Bottom Of The Pickle Jar".

Anyway, it's just a hard reality to know that someone so awesome, who has contributed so much light, love, and joy into the world will soon be silenced. Like, really? Here we go again with that "why do bad things happen to good people" thing. It just pisses me off that such a wonderful woman and family are soon to be torn apart-- and have suffered so much already!-- and scum like G are sitting safe and sound with nary a problem. (Well, being in prison is probably a problem for him, but he totally deserves that one.)

Ugh. I have to go to sleep. I was trying to wait until the pain killer kicked in, but I really just need to sleep. I've got a doctor's appointment in a few hours, and C is coming with me since he has to run some errands anyway. Tomorrow, if I'm up to it, I plan to try to contact the right people to get a disability claim going. Almost 26, and filing for disability. What a life, eh?

Nah, it's good, it's good… I like being alive. I like it even more when I think of my dying friend, and wonder what she wouldn't give to have more time with her family. It's thinking of stuff like that that makes it so hard for me to end it on my terms. Like, there are people out there that would give anything for more time… so how can I throw mine away? It wouldn't be fair. It wouldn't be right.

There are some days when it's hard to be totally cheerful. I mean, there are some days where I'm just a little melancholy. It could be any number of things; perhaps I'm not feeling particularly well one day, or maybe I heard/read/saw something that triggered a sense of loss, or maybe it's that the moon is in the house of Mercury in retrograde or whatever. The fact remains that sometimes that melancholy is just… there. Today is kinda one of those days.

I've not been feeling really well since I had those three days of hell without my pain meds. Did I mention how god-awful sick I was? I really don't think you can comprehend it unless you've experienced it. I couldn't, and I feel uber sick all the time. It was that bad. Like, I never want to experience that again upon pain of death bad. The only thing that kept me going was having a "deadline" to look forward to as to when I could refill my meds. If I had to do that indefinitely… nope. Just nope. I'm not even going there in my thoughts.

Anyway, December was a hard month for me. There was the travel, cold, and stress that came with visiting my family. That was already difficult for me, and then there were two trips to the big city for doctor stuff which was also hard on me. Then at the end of the month came my three days of hell, preceded by a sinus infection which I still haven't managed to fully kill. (Here's hoping the antibiotics work!) It was just rough, physically, and I'm not recuperated yet. I'm exhausted and most of the time I don't know "why". Is there a reason, or is this just my new level of normal? It's hard to tell.

Okay, so I'm feeling crappy and tired and I've got this sinus headache that won't go away and I'm nauseous all the time and my stomach hurts badly whenever I eat something ever since the three days and I'm not really digesting things right right now, and I'm more achy and tender than usual, and… I just generally feel run down. Imagine that you've had a really bad case of influenza and a stomach virus for the past year and a half straight, with periods of getting other sicknesses on top of that. Congrats. You're in my life.

Sorry. I'm sorry. I don't mean to be a downer. I just see everyone around me with their resolutions for the new year, and they're exercising and eating food and getting healthy, and I'm… getting worse. Still. Guys, it kinda makes me want to cry.

I know my life is amazing. I know it. My husband is the most awesome of awesome things to ever be awesome, truly. I have fantastic friends. I have good health care. I have a family that loves and supports me, even if they don't all understand what I'm going through. Our bills are paid. We have the disposable income to be able to go to the movies once in a while, which we did yesterday. We have the money to support pets, and I love my kitties. Life is good, y'all. It's just hard to enjoy it sometimes when you feel so crappy and you're so uncertain about yourself and the future. I know my future with my husband is steady. (Did I mention that we're almost to our first wedding anniversary? I'm so stoked.) But my future with myself is still so up in the air and I hate that. I want to know, dammit! What is wrong with my body? What is the malfunction, and what can we do to correct it? I just want to know!

Did I mention that I had to step back from the HJ? I asked for a year's leave of absence to get better. I believe it. I feel it. This is my year. It's gotta be. I can't afford to get any sicker. What will I have left? I will still be running the teen girl's support group. That much I can and want to do. But the HJ, helping people, that's my heart and soul, man. To have to give that up is killing me. The HJ is exploding. We're getting big, we're getting funded, we're getting really professional and helping a ton of people. Positions are opening up that I am perfect for, and I want to jump in there and do it so much… but I have to sit on the sidelines and watch E scramble to find people that are half as reliable and trustworthy as I am. I have to watch her get let down time and time again because people are flakes, and I can't step in to pick up the slack. I am so helpless. I hate it. I absolutely hate it. It eats at me.

It's like I finally found my passion and my purpose in life, and now I'm forbidden to live it out. It's like being a dancer and succumbing to a slow paralysis. I just… I grieve for my losses, as surely as I grieve the loss of a loved one. Who died, you ask? The Cassandra that was, the Cassandra that could be and could have been… she's slowly but surely faded away into nothing but a faded memory, the echo of half-remembered song lyrics and the wisp of a scent long passed.

I watched What To Expect When You're Expecting again today. It's a cute movie, and I like it. However, it brings things up for me, as so many things do these days. I took a pregnancy test at the doctor's the other day so I could get a renewed prescription for birth control, and the nurse that took my urine sample asked me if I had kids and if I wanted kids in the future. I just smiled and said yes, but my heart started crying because not only did I have babies and I lost them, I don't know if I'll ever be able to create a family in that way and it kills me. I want to be a mom. Oh, I want to be a mom. (This coming from the girl who swore she'd never marry and have a family! But that was just protection to keep myself from getting hurt again.) First of all, I am unsure if I can even carry a child to term even if I were healthy. Secondly, there is no way that I could see a pregnancy through to the end at this point, or even care for the child afterward. As bad as I am right now while on meds, I would have to stop taking all of my medicines while pregnant for fear of damaging the fetus. That's not a viable option at this point. C and I have actually discussed this situation and what we would do if the birth control fails and I find myself pregnant. Both of us agree that we really would have no option but to terminate the pregnancy. Even thinking about that just destroys me, because I want to be a mom… Voluntarily giving up the life growing within me seems so counterintuitive. But it is what I would have to do. I hope and pray that I do not get pregnant until we resolve my health issues. I seriously, seriously do. Fortunately or unfortunately as the case may be, the women of my family are super fertile. (Did you know that I am the result of a drunken one night stand in a meadow? Parties, liquor, and ex-boyfriends just don't make a good mixture apparently. But hey, I'm not complaining. I'm rather glad to be here, actually!)

So, here I am. A happy little mix of weird feelings and positivity and optimism and fatalism and bleak uncertainty and maybe a few bad jokes just for good measure.

Oh, guess what? The last doc to prescribe my pain meds changed the frequency, so now I can take one every four hours instead of making myself wait six hours. It's actually quite an improvement, and although the meds aren't as effective as I'd like them to be (I'm never not in some level of pain, but it's the difference between bearable and unbearable.), it's making a big difference in the level and duration of the spikes of really intense pain. I'm quite happy about that! I still don't like that I'm so reliant upon opiate pain killers for even basic functioning, but I'll shoot a rubber band in the eye of anyone who suggests that I can go without them. The three days proved the folly of that hypothesis quite clearly. I can't wait until I no longer have to slowly destroy my organs to maintain my sanity. This is my year, guys. It's coming. I'm gonna get better. Just you wait and see! Until then… naps. Lots and lots of naps.

(Oh, quick funny story! At M's bday party last night a girl that I'd just met or maybe had met in the past said to me in passing, "You're looking really healthy these days!" I smiled and thanked her politely, of course, but inside I was both incredulous and laughing bitterly and hysterically. It's funny how well I do look, though, to be honest. I mean, I've gained weight but I'm still quite attractive, and there's really no outward indication of my health struggles except for the walker that I use when I'm out and about. I am both grateful and resentful of that. Hard to explain. But I've learned to simply accept the compliments with good graces. No one likes to have their compliments rebutted, no matter the reason.)

I can't even... I just can't. I'm done. So very, very done.

I didn't sleep last night. (I should be trying to sleep now, but the pain is hammering away at me and I'm thoroughly distracted by it.) I was definitely at a 10 on the traditional pain scale, and having a full body twitching episode to boot. C held me while I cried. Well, ok, I dozed some eventually... but I kept waking myself up with cries and moans of pain and alarm. My PTSD symptoms have been escalating gradually over the past few days, and I'm not sure why. They've been interrupting my sleep, and last night was particularly bad. I've been anxious, too... jumpy. Whatever.

Anyway, I wasn't able to drive because I couldn't lift my arms or turn from side to side, but a friend picked me up and took me to my doctor's appointment. While there, the endocrinologist proceeded to exclaim over how I've gained 17 lbs in the past 3 months.

Great. Thanks, doc. I knew I'd been gaining weight, and I'm trying to eat healthy so as not to gain unnecessarily, but I'm pretty much in enforced sedentary mode, here. Not to mention that the Lyrica made me gain some weight, and I never lost the weight I put on from eating all those damn cookies (oh, those delicious cookies!)...

So anyway, I went in feeling crappy and exhausted and miserable and in pain and came out feeling even worse about myself.

I'm so done.

I'm sinking lower and lower into the pit of depression that I recognize oh-so-well... and I feel like I'm too weak to even try to pull myself out, or slow my descent at all. If anything, I welcome the abyss. It's familiar and painful and maybe this inner pain and shredding self-hatred will distract me from the physical pain that is leaching the color from my life and the life from my soul.

Playground school bell rings again
Rain clouds come to play again
Has no one told you she's not breathing?
Hello, I am your mind giving you someone to talk to
Hello

If I smile and don't believe
Soon I know I'll wake from this dream
Don't try to fix me, I'm not broken
Hello, I'm the lie living for you so you can hide
Don't cry

Suddenly I know I'm not sleeping
Hello, I'm still here
All that's left of yesterday

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.

So. The weekend.

The morning that I was supposed to leave, I got a call from the car rental company about half an hour before R and I would go pick up the car. Apparently they were all rented out and had no cars available. I called R and told him what happened, and he showed up on my doorstep to pick me up and go see what we could scare up. Thus began a two hour hunt for a rental vehicle. Apparently there really aren't that many rental cars in Y, and the ones that we could find, well... we kept hitting snags left and right. For one reason or another, two places weren't able to rent to him, which would have saved us, oh, an hour and a half, but... it was a fun/interesting time of riding around with my new father in law and getting to know him a little better. It's not like we talked about anything deep, but it was just... enjoyable. I'll freely admit that I've been intimidated by him in the past, not because he's scary but because he's so... robotic. (Wonder where C gets it from? LOL) I am naturally pretty good at making friends, but in the past he just didn't really engage, so it was unsettling for me. Now that he and C's mom are divorced, though, he's actually happy, and that makes all the difference in the world. So despite the frustration of delays, it was a rather enjoyable time.

I finally got on the road during the heat of the day, which made me SUPER grateful that I wasn't in good ol' Shenadoah, because she's already running hot. I ended up with a Mazda 5, which was sweeeeeet! I've never driven that nice of a car. *sigh* It makes me want one of those new-fangled fancy new cars. The drive itself was uneventful. I stopped at a rest area with nice grass and trees to eat my lunch of watermelon, and I needed to stretch out my aching limbs so I ended up doing some yoga right there on the grass. Funny thing was, I didn't even care if anyone saw me! I used to be so self-conscious about so many things, but I find that as I gain confidence within myself and just do what I need to do, I worry less about what others will think. This is a gift that chronic illnesses and healing from abuse have given me-- learning how to do what is needed for me and not worrying about others unduly. I need to follow my own healing journey in my own time. Of course, there should always be a basic respect for those around you. I'm not advocating narcissism, here! Just a healthy sense of boundaries and self-confidence.

Upon arriving at the hotel, I brought my bags up to the deserted room (C and the girls were at a pre-service for D that I missed because of the timing of my trip, thanks to the car snafu) and proceeded to crash for three hours. Apparently driving wears me out more than it used to. I'm not surprised. I doubt I'd be able to pull off the 24 hours straight trip to Id anymore. When I woke up from my nap, I read a book (A Game of Thrones!) until C and the girls trickled in. They were exhausted, both from their long trip down and from the emotions of the service. We all got ready for bed while chatting among ourselves, and let me tell you, it was so good to be around them again! It was easy to fall back into the routines and rhythms of getting ready together.

That night, however, was a loooooong one. I could not sleep. I dozed fitfully now and then, but sleep was not forthcoming. Early in the morning I took a hot soak in the hotel's deep tub, which relaxed me enough to finally sleep for an hour before everyone was up and getting ready for the day. Surprisingly, I made it through the whole day and into the afternoon before getting dizzy and lightheaded from fatigue, at which point I napped in the church sanctuary until it was time to leave.

I'll be honest and admit (again) that I've felt pretty isolated during this whole process of grieving D. It seems that not many people know or understand that the S's thought/think of me as part of the family, so I'm just that girl that lived with them for a while. Even the P's, who know me and visited the S's multiple times while I was living there, completely left me out of the list of grieving family members in their tribute, opting instead to include the girls' boyfriend and fiance. Um, hello? I've been a part of the family for just as long or longer than both of those guys! Aaaaaaanyway... nope, no bitterness here! lol So in addition to being ignored or marginalized, there is no one down here that even knows D. BJ met him once, in passing, as did my grandparents, but that's it. J knows them better, but she's all the way across the country (well, halfway right now, anyway), so I've pretty much been left to mourn alone. C has been fantastic about comforting me and listening to my stories of D and the S's, but again... he doesn't know D. It's not the same. He talked to him for a few moments on Skype once.

The man who performed the service, though, made it a point to include me. It may not have seemed like much to him, but it is something that will stand out in my mind and which I will always be grateful for. When we introduced ourselves, he said, "Oh, I know who you are. I saw you in the S's pictures." Then he asked if I'd like to give a tribute during the family time, which of course I jumped at. I just really appreciated the inclusion. In addition to that, I had let C know how important it was to me to sit with her and the girls during the service itself, and that was accommodated, which I appreciated an unspeakable amount. K and I cried together during much of the setting up hour, and I cried on J's shoulder several times throughout the service.

As much as I hurt for me and the girls, though, it was C's loss and pain that struck me the most forcefully by the end of the service. Now that I have C, I can't fathom losing him. The pain would be almost unbearable. Yet here is a woman who shared 30 years with the love of her life, and now he's gone and she's alone. The loneliness... would be unspeakable.

It got me thinking about life, and love... and whether it's all really worth it, you know? Because really, when you love someone, you are opening yourself up to the inevitability of loss. People die, and unless you and your spouse both die at the same moment then one of you will have to face the incredible pain that comes with that loss. Is it worth it? I was thinking about that, and wondering... but then I think about C and D, and how much I learned by watching their love lived out in their lives and in their family life, and I realize that it's greater than just two people in love. It touches and affects the people and community around those two in love. It is because of C and D that I really felt okay in moving forward with marriage, having the assurance that yes, a healthy marriage and family is actually a possibility and not a wild goose chase. And even when one of those two is gone, or even both of them, their love has left a legacy and a mark on the world around them that is worth the inevitability of pain and loss.

I also thought of C, my C, and when I thought about him I concluded that whatever time I have to know and love him is worth the pain and loneliness that will come when he's gone. Maybe it makes it even a little sweeter, knowing that there is a shadow in our future that nothing can prevent. What I took from my conversations with C about her loss and loneliness, though, is that it was also worth it for her to have known and loved D, even though he's gone now.

Love is a special thing. I'm glad that I have so much of it in my life. I am truly grateful for the abundance in my life, as I tell myself frequently... and I find it fitting that even after passing away, D is still influencing people in a positive manner. His life was such that it cannot be silenced, even in death. I only hope that I can live that well. It would be an apt tribute to a gentle giant of a man.