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

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

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

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

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

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

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.

What do you do, when everything comes crashing down around your ears? I don't mean literally, of course, although I had my doubts while Corey was up in the "attic" crawlspace to install the ceiling fan we bought for our bedroom (go tax returns, yeah!) and trying not to fall through the ceiling.

I dunno. Sometimes it all just kinda hits me, you know what I mean?

What do you do when you hate every second of your disease, but it's so imprisoning that you can never forget that you have it for any of those hated seconds? I'm talking Ehler's-Danlos here, although Addison's has been giving me a run for my money lately too, trying to manage my adrenal glands manually. Always a tough challenge for me, even more so lately.

So do you just hate your life, then, because the two are so inseparable? Usually I try to wrap my world in beauty, to find it, create it, whatever I have to do. Sometimes, though, the cold stones that weigh in the pit of my stomach overcome me and all I can see, all I can feel, is the destruction of the life that I had, the life that we planned, the future of my personal dreams and our mutual hopes. And it's hard, really hard, to not hate your life when every moment is agony and you know that there's no cure, there's no hope, there's no remission, and it keeps getting worse. I try not to think about what it'll be like in a year, 3 years, 25 years, but when I'm huddled on the bed and sobbing into my husband's pillow while trying not to move because it hurts, I think about those things. I think about them, and I am afraid.

I don't want to do this. The weight of the agony that waits for me is too heavy a load for me to bear. It's scary, but more than that I hate hate hate HATE what this agony has done to me personally, to my husband, and to our relationship. I hate what it's going to do. I appreciate, in a circumspect way, how it's going to make us better people and probably already has--as is the nature of suffering--but that thought remains rather subdued.

When he came to bed tonight and I lay next to him, trying to relax and mayyyyyybe get some sleep (no sleep to be had this night, alas), I eventually spoke up. (Choked with tears, of course.)

"I'm sorry for being so sick. I hate every second of it. I think I hate it more than you do. I hate what it's done to our life."

He didn't respond.

Not a word.

In my time of desperate emotional need, he stayed completely and 100% silent…

…except for the soft and sudden rustle of bedsheets as his foot sought out my two feet, entwining them beneath his leg and covering them with his own as he rubbed his instep against the top of my foot a few times.

All I could do was blink away the tears, sigh softly, and let this renewed sense of peace settle deep into the center of me where I will lock it away tightly and hold on to the hope that it's going to be okay… somehow. Three feet of peace--my two feet and his comforting one-- to remind me so.

"I love you."

"I love you too, lady."

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.

Guess what, y'all? It's National Invisible Illness Awareness Week! I'm about half a week late on this, because, guess what else? Yeah, that's right-- I was busy being sick with my invisible illnesses ;) Funny how that works, ain't it?

Anyway, I'll be catching up with a few little things here and there that other bloggers are doing to 'celebrate' this week and to bring awareness to invisible illnesses and what life with them is like, but for now, all I've got is a post from my other blog, the more public one, that gives a little insight into what life is like for the invisibly ill. It's hard to deal with diseases that no one can see, and ones that aren't main-stream, popularly accepted diseases like cancer or ALS or autism. ALS and autism have some symptoms that are on the more visible side, but for the most part they suffer in relative anonymity.

When you have an invisible illness, it's easy to judge and be judged. "But you don't look sick!" I know, I know. In fact, I look pretty good, if you discount the weight gain. (Some would even say that I look better now, with the extra weight and curves, than I did before!) But the suffering is just as real, just as valid, as someone with a broken leg or a shattered spine. My disability is just as devastating and pervasive as anything else you can think of, but I don't have the "legitimacy" of a cast or an IV pole or something tangible that signals I've got a terrible reality squatting on my shoulder at all times. I suppose that I'm "lucky" in that I need my walker, the Bling Chariot, to get around outdoors because it lends me an air of disability that wouldn't be there if I simply limped around and sat whenever I got the chance. People often ask me if I've had surgery or injured my leg somehow, though. When you see an otherwise healthy looking young woman your first thought will probably not be, "I wonder if she is dealing with crippling physical symptoms that have totally devastated her ability to participate in society in a regular manner?" I think that now, when I see people with a particular gait or look on their face. I watch people much more closely now, and I understand a bit more than I did previously, but here's the thing: until you or someone you love has experienced something, you just aren't going to think about it. You don't know, you don't know a damn thing, and you really can't. And you know what? That's okay. That's okay because how could you possibly, unless someone explains it to you?

That's the whole point of Awareness Weeks. People don't know, they don't understand, because it's not visible and it's not obvious and if you haven't had experience with it you could never, ever guess what it's like and what we face. I didn't know. I'd never heard of fibromyalgia or chronic pain or connective tissue disease or Addison's or thyroiditis until they all happened to me. Food allergies I'd heard of, in passing, but I didn't know anything about them until I was forced to, for my own survival. I was told by a doctor yesterday that I am one of the most well-educated patients she's met, and though it's not the first time I've been told that by a medical professional it always shocks me. Shouldn't at least the people who have the diseases care? Shouldn't they want to know, to learn, to be as in control of these crazy diseases as you can via knowledge? But apparently many choose the path of ignorance, even when their very own body is on the line.

In closing, I can tell you that some of the most moving and profoundly meaningful things I've heard since I got sick came from family and friends who have told me that when they learned the name of what I have, they went and researched to understand it better, to understand me and my new reality better. My friend, The Artist, shares stories with me about how she defends me to friends of hers that see my comments and posts on Facebook through her account and question the veracity and legitimacy of my claims. Am I faking it for attention? Exaggerating? Fibromyalgia is just a "throw away" diagnosis; it means the doctors don't know what it is and they tell you that to keep you happy. She's probably not as sick as she claims to be. And so on. But this girl stands up for me, she calls these friends of hers out, and she shares what she's learned from me and from her own research and she shuts those kids the hell up! And it melts my heart with gratitude and something more, every time. It reaffirms my value as a person, as a friend, and her trust in me and the self that I present to the world. In short, her bringing awareness to others on my behalf validates me entirely, and our friendship to boot. It totally almost makes me cry every time I hear about it.

Personally, I think that's how awareness spreads the best-- through the personal connections. I am not going to stop sharing the hell out of articles and pictures and blog posts on Facebook, but it's the personal connection I have with my friends that makes them want to read the articles, to learn more, and to pass on the information to others when they hear ill-informed opinions being bandied about. Truthfully… I'm super humbled by the friends that have stepped forward to be by my side for this lifelong fight I'm enlisted in. There's no way, absolutely no friggin' way, that I could do this well in isolation.

With that in mind, happy National Invisible Illness Awareness Week! May our friendships and relationships be sturdy and true, and may they lead to greater awareness in others… and within ourselves.

I'm so stressed, you guys. I have prescriptions I need to pick up tomorrow, but I can't afford the $15 to get them. I have a massage scheduled for tomorrow as well, which is one of the only things keeping me able to still walk right now, but there's no way in hell I can afford that. I could get my scripts, but then I wouldn't be able to pay my phone bill… and somehow I still have to make it to Phoenix twice and LA once this coming month for important doctor's appointments. Oh yeah, and the pharmacy in LA I got my pain meds filled at shorted me (and some other patients), and I've been trying to get it straightened out since Monday, but I'm running out today and I'm afraid I'm going to end up back in the hospital again… Damnit. I just don't know what to do. What can I possibly do that I'm not already doing? 

The worst thing is how unfair this is to Drogo. He has always worked hard, saved as much as he can, been responsible with his money, and the present is no exception. He just can't seem to catch a break, though. When it seems we're about to come even and he might be able to get a handle on his bills again and even sock away a hundred or two dollars, something breaks or is more expensive than anticipated, or some new bill crops up. Without fail. He is such a trooper, but how long can he last under such a strain? The poor man feels like a failure, but he is one of the most valiant men I know. How unfair is that? And it kills me that I am the source of this pain and stress. I hate it. I hate myself sometimes for being the instigator of bills that I am.

It's no wonder Drogo and I are having relationship problems from stress. We're both freaking the fuck out, trying to figure out how to just SURVIVE. I hate this. I hate this so much. Being sick is stupid. I have to believe that it will work out somehow, someway… but I really do not see it happening at this point, and it terrifies me.

I've done what I can-- created the fund raiser, sent links/pleas to every single person on my Facebook friend list, even sent the link and an appeal to some pages and businesses that I know… asking them to at least repost the link so that someone, somewhere might see it and have pity on us. I'm working on the inventory and production for my craft booth I've got planned for this winter. I haven't even put any money into supplies-- I'm just using what I've accumulated over the years. I applied for disability and we're just waiting, waiting, waiting… what else can I do? Seriously, what else can I do???

I'm stressed, scared, sick, and generally distraught… but I still have to believe that it will work out. We're doing the best we can. Life rewards that, right? Hard work, sacrifice, integrity… those all pay off in the end, yeah? I hope so. I genuinely, sincerely hope so. 

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" :)

So after 2+ years of being on gabapentin ("Neurontin"), which is a psychoactive drug used to treat epilepsy and neuropathic pain, I finally decided that I wanted off. I mean, my dose had been increased several times throughout the years with still no help for the pain and too many negative side effects for me to want to take it any longer, especially if there are no benefits to outweigh the risks or negatives.

I tapered down after telling my neon pain doc that I wanted off, which she instructed me on how to do, but I was already not doing well because I had yet another instance where I was forced off of pain meds for a few days. It was a crappy week +, but then the night that I took my last dose I started feeling really, really awful. I thought it was just a bad bout of "fibro flu" at first, but as my symptoms continued to worsen and I was the sickest I could remember being in recent memory, even worse than when I had just been going through pain killer withdrawals. I told Drogo the second night when he got home from work how awful I was feeling, and how it just felt like really bad withdrawals and… then I kind of got an idea. I did some research online real quick (thinking that it may have been something to do with seratonin toxicity, which can be SO dangerous), but the only real change had been quitting gabapentin. My symptoms lined up perfectly, and I thought that I might be able to persevere at home now that I knew what I was up against. You know what I mean? It's just easier to fight a known enemy, even though I still felt increasingly worse. (And really? Going off of this med with no warning whatsoever that withdrawal symptoms were coming, much less that they'd be so virulent?! It was a very nasty surprise… but in retrospect, I should have totally seen it coming. Oh well.)

I had a doctor's appointment with my GP the next morning, and she was concerned. She wanted me to go to the ER for monitoring just because of the severity and concern connected with many of the symptoms, most importantly bad chest pain and very low (for me) blood pressure with severe and consistent near syncope upon movement. (I actually collapsed/passed out in front of CVS right after the appointment, but Drogo was there to catch me and lower me to the ground. I really gotta stop collapsing in pharmacies.

We decided not to take me into the Emergency Room because, even though insurance covers a lot of the expenses… the hospital is NOT a cheap place, not by any stretch of the imagination. Khal Drogo was stuck in a hard place, seeing me so sick and knowing that I really ought to go in, but looking at the long-term of our financial situation and just feeling that, well, we can't swing it. Ever watch Cinderella Man with Russell Crowe? He finds himself in similar situations as he struggles to feed, clothe, house, and keep his family healthy in the midst of the Depression. It was not easy to watch Drogo wrestle with the decision… it hurt me to watch him have to make such a terrible choice.

A few hours after my appointment, however, I was still worsening, and fast. I texted mom and RDad to tell them what was going on, mom called RDad, and Rdad called Drogo to tell him that finances weren't a concern. Get me to the hospital. The timing was great, because I had just texted Drogo from the bedroom saying that "I am getting worse, and I don't know how much more I can take." I broke down crying about that point, because while I deal with a great amount of pain on a regular basis I am also worn down from doing that for so long without any significant relief at all. The "regular" pain combined with the awful withdrawal symptoms and pain was just too much for me, and so on the 3rd day of withdrawals I ended up in the Emergency Room. I hadn't been able to eat hardly anything the past few days, and that morning I'd only had a small applesauce snack cup, so I started getting pretty ill from not being able to eat while in my ER room in the back. In addition to that, I wasn't allowed to take my own meds and so the time for pain killers came and went… and my pain (a 9.75 when I came in to begin with), skyrocketed. I finally fell apart after a few hours, especially after having to get up and move around for x-rays, and I started sobbing and wailing uncontrollably which lasted for an hour or two before I was given something that took the pain back down to manageable (about 9.5 again).

Yesterday was kind of a blur, but I know I was eventually admitted and I haven't broken down crying since. The pain has been bad, don't get me wrong, but below a 10, and I am okay with that!! LOL. During initial triage, the nurse that was trying to take my blood and put an IV in just wasn't doing a good job somehow. The tourniquet hurt like nobody's business, driving my already high pain up, and then she was digging around with the needle and tapping on it for over a minute before I told her to just use the other arm. I couldn't handle the tourniquet pain any longer. She hit a nerve (twice!) as she pulled out and I couldn't help but scream and start sobbing again. I actually blacked out for a split second because it hurt so badly. It startled me.

I've had some great nurses, though, and the doctor who saw me was good. Professional. Friendly, but genuine. He's keeping me overnight again, since I'm still so symptomatic and not doing well… sending me home would not be a good idea right now. I feel much safer and way more comfortable here, with regular medicine application, constant saline drip in my IV, nausea meds, and a type of synthetic opioid, methadone, that is actually used in detox programs for opioid addicts. My pain is still hanging out in the 8-9 level, but that's "normal" for me anyway, and my pain is being aggravated by all the other stuff so it's not a big surprise. I'm getting the methadone and tramadol, as well as IV solu-cortef, which is what's in the "stabby stabby" that I have to administer when I get into an accident or whatever to avoid adrenal crisis. It is more potent than the tablets I normally take, and I can feel it keeping my body more relaxed and stable. It's nice. I thin that was part of why I "collapsed" in the ER as well, because my adrenals were shorting out or whatever on top of everything else. I wasn't allowed to take my meds, remember? It was a nightmarish afternoon. I can legitimately say that I have not been in that much pain before in my life, except maybe in small, short bursts. I was waiting to pass out from the incredibly high pain levels and my utter fatigue (especially after sobbing uncontrollably for a prolonged period of time, and being so weak to begin with when I was brought in-- couldn't walk, could hardly sit up at all).

So… it's been a fun adventure. I feel awful, yes, but not as awful as I would if I had just tried to make it at home. I mean, I did try, and I made it as long as I could, but I just kept worsening instead of stabilizing or improving, and there's only so much a person can take, ya know? I'm so grateful for the intervention of Mom and Rdad on my behalf. I'm honestly and genuinely glad that I was admitted and that I'm being taken care of. This has actually done a fair deal toward improving my totally bleak perception of medical care here in my town, and in the hospital/ER in particular.

I haven't been able to sleep more than 2 or 3 hours since I've been here (or even the day before), and I keep waking myself up with dry heaving when I do manage to fall asleep, but I'm going to maintain a valiant effort to crash the heck out. I'm SO. TIRED. Hah.

Before I go tho, let me take a selfie… LOL. I figured I had to commemorate such a momentous event. Plus my hair looks freaking fantastic, rolling around in the hospital bed this whole time :D

How's my pain? It's over 9,000! LOL

Look! I'm a fall risk! First time for that… means I'm not allowed to stand up on my own.

A whole breakfast tray of… nothing I can eat. I learned how to order whatever "safe" food there was before my tray gets brought up pretty quick, and Drogo has been bringing me safe food from home so I can eat little bits when I'm hungry. Still can't eat much yet, abdominal cramps and nausea too bad.

But they gave me Sprite! Rock on, nurses.

Peace out, homies and fellow Spoonies. May your spoons be plentiful, and take care of yourselves, yeah? I'll stick to doing the same over here.

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

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

 

• Joan Kelley You having a bad day?

  15 hours ago · Like
• 

  Cassandra Russom Bad couple of months.

  11 hours ago · Like
• 

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

  10 hours ago · Unlike · 1
• 

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

  8 hours ago · Like
• 

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

  8 hours ago · Like
• 

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

  7 hours ago · Like
• 

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

  7 hours ago · Like
• 

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

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

  5 hours ago · Unlike · 2
• 

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

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

  3 hours ago · Like

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

3 hours ago · Unlike · 1

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

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

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

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

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

Why me?!????

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

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

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

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

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

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

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

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