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.

So today is the day. I'm headed to the University to see the good ol' doctors and hopefully, hopefully get some answers, maybe move forward an iota in this journey. My friend drove me, and we've been having a grand old time. She's a pretty new friend, but we've bonded quickly and have a lot in common. I really enjoy spending time with her, and she doesn't mind driving me these long distances so it's a really good symbiotic relationship.

It has been so long since I've gotten out of the house and just had fun, but when I'm out on road trips with Cheryl we have fun! Granted, they're medical road trips, but who cares? We went and got pedicures last night after getting into town because I've needed one desperately for some time. The bottoms of my feet and my heels were dried, cracked, peeling and bleeding but I can't reach my feet to take care of them anymore. (I can't soak in the tub any longer either, because I can't get myself up and out; it's too painful and difficult.) I haven't been able to bend like that for some time, just because of the spine and ribcage and stuff, and I have more difficulty bending my knees now. I ask Corey to help me now and then, but he blows me off because he doesn't want to do it, like most of the things I ask him to do for me. Massages are the most frequent request, but he finds them boring and so it doesn't happen. I'm hoping that he can learn to grow and change with the situation and become more proactive, more helpful. When we talk sometimes he says that he doesn't know what to do to help with my pain or other troubles, but that's not the truth. He knows, because I tell him. I ask for things, I don't just assume that he knows what I need. He just… doesn't wanna do it.

Cheryl and I have been talking about a very wide range of things on this trip and I've gotten to vent about the hurt and frustration I'm feeling in this season of life. It's not just one thing, of course, but a whole kaleidoscope of minor and major stings and slashes and bruises. I'm just trying to make things better. I hope it works. The best thing about our conversations that range all over is that not only are we so much alike but she understands from the chronic illness standpoint as well. Her disease came out of a long remission about 4 or 5 years ago, so she's feeling the sting of losing the normalcy and routine of the life that you lived and maybe loved. I'm going on 3 years and I still have a hard time making heads or tails of it. Yes, Friko, there is more to me than illness, but I just live those parts. I don't need to blog about them because they don't cause me pain, I don't need to sort through the feelings. A lot of who I used to be and what I used to do is gone, though, and I'm trying to figure out what fits in the gap. It hit me like a brick last week to realize how dependent I've been forced to become and that just galls. I was such an independent woman, a "doer", a travel across the country by myself, backpacking, hiking, counseling and administrating, housekeeping, job holding person who could drive herself to the store if she needed to. I can't do any of that anymore. I can hardly cook for myself these days, me who used to cook for our family on a daily basis. I'm a damn good cook, but it's too painful and exhausting for me to pull it off any longer.

So all of that is tumbling around in my mind like a rock polisher hard at work as I face this appointment. I have no idea what to expect, but I know what I'm hoping for. If they can actually definitively tell me what disease I have then logically there will be a course of treatment that will help me to at least stabilize, but hopefully to become functional again. That is what I am looking forward to. I resent my dependence and so does Corey. He's resorted to mechanical functioning and nothing I do can bring him out of his shell. He won't even say "I love you" unless I say it first; it's just a response. He doesn't kiss me, I have to go up and kiss him. It's like he doesn't want to interact with me anymore beyond a superficial basis-- I kiss him and tell him I love him when he goes to work, I kiss him and tell him I'm glad he's home when he comes home (all true, by the way). We'll fix ourselves something to eat, watch a few episodes of whatever show we're watching together, take a walk for half an hour or so, and then he retreats to his man cave to play computer games and I do whatever it is I need to do (sleep, read, slowly accomplish some chores) until it's time to go to bed. He doesn't cuddle with me in bed anymore, either. Lately there's been a teeny bit more of that, but it's because I cuddle him, wrapping an arm around him or entwining our feet like we used to do…

I don't know if it's the truth, but I feel like the health and happiness of our marriage is intrinsically tied to the state of my health. If I can get a good diagnosis and course of treatment, I can get somewhat better. Then Corey won't be as stressed or freaked or whatever he is, and he'll return some closeness, maybe? Hopefully? I'm reminded of a time we were talking about something or other and he said, partially in jest I hope/think, "I don't want to deal with cripples," or some such. I just kind of laughed, patted him on the shoulder and told him, "Sweetie… you're married to one."

I tend to get my hopes too far up in the sky and then bemusedly wander around, dripping with my own blood, when those hopes fracture and come crashing down on me to crush and transfix me. It's kind of a weakness. But is a diagnosis of what is clearly a destructive disease really that big of a dream? I mean… shouldn't it just be kind of a realistic thing to expect from life? And so I welcome you to the times and trials of the chronic illness patient.

(If you want to hear a neat song about high hopes, check out Sinatra's song about high, apple pie in the sky hopes. It's adorable.)

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.

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

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

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

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

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

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

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

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

I'm sorry I've been so sketchy at writing. It's just that usually I'm so tired and my brain is so fuzzed up that it's hard for me to keep a train of thought going, even during conversation. In addition to that, it seems like things are both not happening at all and yet so many things are happening that I don't have the gumption to write it out. Any feels I have these days I usually cry out in the tub, or into a pillow, or onto Corey's shoulder. (I've also decided, what's up with the aliases? It's hard for me to keep track of them now, and internet anonymity is really kinda not much of a thing these days unless you work really hard at it and I'm just not willing to put that much effort into it anymore.)

I've made some friends, new friends, and one of them drove me to the pain doc in LA yesterday. It was a fun experience… she's basically like a version of myself in 20 years, so we get on great. Anyway, the doc mentioned it last month, but this month he was really emphatic that he thinks I'm dealing with seronegative arthritis, which is arthritis that doesn't show up on blood tests. Next month I've got an appointment in Tucson at the University with the rheumatology department there for a diagnosis. I was thinking EDSH, maybe, but now there's this question of arthritis… maybe it's both? Who knows, really. Maybe it's "just" hypermobility syndrome and also arthritis. I dunno. Whatever the case, I think things are finally starting to get figured out, and that's a relief.

I am so tired of trying to wrangle all of these doctors and appointments and trying to get all of the doctors to work together and communicate and send the dang files when they're supposed to and, just… my goodness. So done.

But I have a "vacation" of sorts coming up in a few days. My sister in law is coming to pick me up and I'm going to spend the better part of a week in Tucson with her and an artist friend, just kicking back and enjoying the sights and being a tourist. Both of them have a clear grasp of my health status and my limitations, and I'm so very grateful for that. I wish I didn't have so many damn limitations, but it is what it is. I'm looking forward to a chance to go have fun, to be out and about and also have reliable rides the entire time, to more or less be catered to I guess? And the last time I took a trip that wasn't for a doctor's appointment was in March, when we went to the Renaissance Festival. Seriously.

Marriage. It's been strained in ways, because of our tight, tight finances. I was denied disability and I'm still working on finding an attorney to appeal it. I had a lead but that closed down today, so I have to keep searching. I only have 30 days. The stress has been hard on both of us, but it's also led us to be very, very honest with one another, to have some good talks, and we've had a lot of fun together as well. There are pros and cons both, as with all things. One reason I had been somewhat unhappy a while back is because I had fallen into that tempting trap of comparing us with others. First of all, we are a unique couple, and healthier than pretty much any other couple I know (neither of us could think of a healthy marriage that we could turn to for mentorship; isn't that horrifically sad?!), but more than that we are dealing with chronic illness and a terribly unique situation. There is no manual for this. We're making it up as we go. Sometimes it's rougher and tougher than others and I cry a lot and feel sad and lonely and unfulfilled, but those times seem to be further and farther between now, especially once I embraced the fact that we have to make our own journey and I have to look for the ways that Corey uniquely expresses his love toward me. He's not a writer or a poet or a very traditionally romantic guy. I'm not going to get grand gestures or sweet notes or thoughtful surprises. He will, however, drive me to and pick me up from a doctor's appointment on a day that he has called in sick (which he never) does because I am not well enough to drive myself any more except on very rare, desperate occasions. He got up earlier than he wanted, while sick, and drove me to the appointment and picked me up, all while not feeling good. THAT, ladies and gentlemen, is love. So, stuff like that. I would love flowers, sure, and he likes to get them for me, but we can't afford that right now. We are having an alarmingly difficult time with basic bills and food, as hard as that is to admit. He is kind of depending on the hope of my getting disability to help us pull through in the long run, but I found out today that I just don't qualify at all for SSDI. I didn't work long enough and recently enough to get credit for that. I really hope I can get SSI, because it's our last hope, really. If I can't get that, I don't know what we're going to do. I just don't. I've been making some crafts in the hope of selling them, but the price for a stall at the swap meets is outrageous! I'm still hoping to sell them, though. That may help a bit on the finance side, but if nothing else then at least it's been a good outlet for me.

There's a lot of feeling overwhelmed for me these days; overwhelmed with feeling lousy almost every second of the day, overwhelmed with juggling doctor's visits and records and lab tests, overwhelmed with paying for all of this doctor stuff, overwhelmed with trying to "be sick right" and eat the right things and take the right supplements and meds and exercise and do everything that I can to keep my health up so it's not my fault, overwhelmed with sorrow that my financially stable husband is now struggling to handle basic life costs because his wife is so high maintenance to just keep alive and semi-functioning.

But, you know, there's also good stuff. There's always good stuff. Life isn't entirely bad, except when I'm going through a particularly bad depression slump, lol. I suppose that instead of feeling pressured to write about everything going on at the moment maybe I should just pop in and write little blurbs here and there, like small anecdotes that give a picture into my actual life rather than just my thought and emotional life. Hell, maybe one of these days I'll actually put together a coherent blog post on a topic, rather than just rambling! Perhaps not. I don't think that's the type of blogger I am, at least not on this blog. This one is for me to come and feeling-vomit and walk away feeling a bit lighter.

Speaking of lighter… I am gaining weight, so much weight, and I can't seem to stop it. I am revising my diet, exercising more (yes, even with the pain!!), trying to eat less… and still I've gained 18 lbs in the last month?! What the hell is that?!?! I don't know what's wrong, I don't' know why this is happening, but I dislike it. I hate it. I don't want to be fat, but I am. Today, though, I looked in the mirror after dressing and I thought to myself, "I am not going to try to look like a skinny girl because I'm not; I'm a big girl. I am a big girl, but I'm still pretty." And I actually felt that, I believed it, and it was a nice place to be mentally.

The cats are going stir crazy because I've kept them inside for the past half a weekish, due to Halloween. People do awful stuff to animals around this time, and I want them to be safe. I have a very strong protective urge that centers around those in my "circle", including my family, pets, friends. I guess I just feel the need to take care of people. It's been bred into me since I was a young'un, living in such unpredictable, dysfunctional environments and being the oldest it made me the caretaker of the kids… and of the adults, after a fashion. That urge has never died, though it has matured, become tempered a bit and and much healthier. Learning about boundaries and implementing them in my life has made a huge honkin' difference, though I know I still have stuff to learn in regards to that. As far as the cats go, they get their freedom tomorrow. As for me, freedom comes in a couple of days, Monday specifically. Unfortunately, the morning I leave is the day of the afternoon that Corey comes home. We're gonna miss each other like ships in the night and I won't see him for over a week by the time I get back, which is gonna be kind of a bummer, but it'll be great to see him when I get back.

And that is a slice of my life as it lays right now.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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" :)

Right now I'm in "anger" and possibly "denial". I'm so pissed off at what I've lost, what I have to deal with, what I must endure… I'm just sick of it. Honestly, I'm SO over this.

I continue to deteriorate, despite my best efforts. I can't remember what it's like to have a normal, healthy day. The last time I had a day that I could consider "good" (read: less pain than usual, no limping and stiffness, no flu like symptoms to speak of) was… the 2nd week of April. The weekend that my friends came and cleaned my house for me.

I keep racking up new symptoms, tallying up the worsening of existing symptoms, and I continue to battle the medical system for appointments and diagnoses and whatnot. I am very pleased with the pain doc I finally found, and I think it's going to be a beautiful, long-term relationship.

But seriously… I just have this deep seated anger that I can't shake. What I'm going through isn't fair, it isn't right, and I'm just too young and generally amazing to be incapacitated so! There is so much that I could be doing to better the world around me, but what am I doing? Lying in bed, posting inane things on Facebook, and sleeping (or not). I feel like my life is being wasted, frankly… and that pisses me off. 

I had such promise, such dreams, so many talents, and they are being wasted. I don't feel like I'm contributing anything of worth to the world, or even the relationships that I hold dearest and closest. What do you do when you feel like your life has lost purpose and meaning? When you feel like you have lost purpose and meaning?

It's like… I still have these shreds of rebellion and hope that refuse to die out, but I'm not sure how to feed them right now. I'm just so… lost. I realized the other day (or was it today?) that even when we get my pain under control and some/most of my symptoms managed and handled… I will never go back to "normal". I guess I've been holding on to this fantasy that when I can finally get my pain managed that everything will stabilize and that I'll go back to being the same bouncy, energetic, productive person that I used to be. It's finally hitting me that my life is forever altered. I have no idea what my future looks like-- will it be full of the same untold suffering, day in and day out? Will I ever have a recovery to speak of? Am I going to spend the rest of my life just surviving?

Hell, I don't even know how to adequately articulate all of this. I can't explain what I'm feeling, because I really don't understand it myself. I just know that I'm angry, very very angry, and very sorrowful. I worked so hard to come to like instead of loathe myself, and now here I am again… I feel like all of my hard work has been undone, because I really don't like the person that I am right now. I mean, I like who I am inside well enough, I guess… I'm okay… but I hate the life I have now. I didn't choose this, I didn't ask for it, and I don't want it. Why me? Like, seriously, what the fuck?!

I'm also super pissed off at what this has done to my marriage. We're making it work, and we definitely love each other and all that jazz, but honestly it's hard. Marriage and relationships are hard to begin with, especially when you've got the baggage that I do, but with all of this chronic illness shit on top of it? It's like the odds are stacked against me so high and rising that I can't help but feel I unwittingly made an enemy somewhere who's in charge of all the cosmic, circumstantial shit. I hate how stressed Drogo is, I hate that the stress has killed our sex life, I hate all of the bills piling up and how inadequate it makes him feel when it's no fault of his own at all (and when he's actually borne up under this remarkably well!), and I hate being "that couple" that always has to ask for help from everyone around them. I hate that we don't have many friends, that we can't go out and do fun stuff, and that it's just such a struggle for so long. We have this morbid inside joke that we're ready for our sunshine and rainbows now! Any day, really. lol. But it's the truth. This is just so hard, on so many levels, and I'm sick of it. It's hard enough to have all of the sensations you experience be unpleasant ones day in and day out, but on top of that there's all of the emotional agony and stress to just exacerbate things.

I also hate that I'm fat now. Yeah, yeah, I'm still attractive, blah blah blah, but I'm over 200 lbs now. I have never been this heavy in my life, and it pisses me off to NO END that I try to eat well and I exercise as I can and I got off of the stupid meds that were helping me to gain weight, but I just keep gaining and gaining and I don't see much I can do different at this point. I mean, it's not like I'm eating any junk food at all. We spend $50 on groceries each week for both of us, combined, and Drogo is practically starving (I feel) to make sure that I get enough to eat. He is starting to realize that he needs to eat more, thank goodness, but it's not so bad because he's always been a rather spare eater in general. But I hate that he has to make that decision, and that we have to clip coupons and be so spare and careful in our choices because we have so many fucking bills to pay. I'm tired of actually coming up against the decisions of whether to buy food, gas, or medicine.

I know I'll work through this and eventually (lord I hope so) reach "acceptance", but right now… I'm just wallowing in the anger. Maybe it'll give me the fuel I need to keep going. It's either anger or soul killing despair, so I'll choose the more lively of the two.

I feel like what I'm feeling (and thinking, when I'm coherent enough) at this point in time can be summarized by the two following Skillet songs, "Never Surrender" and "Sick of It." Never Surrender, especially, is almost verbatim what my heart is sobbing to itself. (Emphasis mine, for especially applicable text.)

"Never Surrender"

Do you know what it's like when
You're scared to see yourself?
Do you know what it's like when
You wish you were someone else
Who didn't need your help to get by?
Do you know what it's like
To wanna surrender?

[Chorus:]
I don't wanna feel like this tomorrow
I don't wanna live like this today
Make me feel better
I wanna feel better
Stay with me here now
And never surrender

Do you now what it's like when
You're not who you wanna be?
Do you know what it's like to
Be your own worst enemy
Who sees the things in me I can't hide?
Do you know what it's like
to wanna surrender?

[Chorus]

Make me feel better,
You make me feel better,
You make me feel better,
Put me back together.

[Chorus]

Put me back together,
Never surrender,
Make me feel better.
You make me feel better,
Stay with me here now,
And never surrender.

"Sick Of It"

If you're sick
If you're sick
If you're sick
If you're sick of it
If you're sick
If you're sick
If you're sick of it!

When everything you do
Don't seem to matter.
You try but it's no use
Your world is getting blacker.

When every time you fail
Has no answer.
Every empty promise made
Is a reminder.

No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!
If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

Every single day
I chase my own tail
Like a rat inside a maze
Gotta get, gotta get, get away

I'm running out of time
For me to break this.
I'm tired of feeling like
I'm never gonna make it.

No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!
If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

I'm tired of it
I'm over it
I'm bored of it

Gotta fix this
I'm sick of it!

Raise your hands
If you're sick
If you're sick of it
Raise your hands
If you're sick
If you're sick of it

Sick of it!
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

Are you sick of it?
If you're sick
If you're sick
If you're sick of it!

Get rid of it!
If you're sick
If you're sick
If you're sick of it!

Okay, I admit that my last post about Drogo was written out of my own irritation, and I'm glad that I have this safe place to vent and not go pouring my wrath upon him whenever I have fleeting feelings.

What I do have right now, though is kittens "helping" me to blog.

They are climbing on my hands and the keyboard and popping up between my arm and my side. It's pretty adorable.

Anyway, back to my admittance… I think Drogo just needed some time to, you know, be all grouchy and moody and whatever, and now he's getting over it. I pretty much decided that I was just gonna hold off and not really interact with him beyond passing conversation (i.e. not seek him out and "try to make things better") because I realized that women need a closeness when things are going wrong. We want to connect, to draw together, to be reassured and to talk and know that it's all gonna be okay etc. Men aren't like that. They want to be apart, to do productive things that will assure the desired outcome (that the thing going wrong won't be going wrong anymore) will come to pass. My continual pressing on him to make me feel better and to try to make him feel better and see if there was anything I could do to make things better and make the situation better was really just making things worse. So… I decided I was going to do for him what he needed. Space. Time. Silence. Okay.

I had to check my motives, though, and make sure that I wasn't ignoring him to punish him for being irritating, but to make sure that I was holding back from him to give him space to finish being grumpy on his own terms and in his own way. Waiting, you could say. Not punishing. And I did. And it felt kinda weird, but I knew I was doing the right thing. He came in after work and laid down with me for a bit, and I enjoyed that. He asked what I did, and I filled him in on the day. We discussed some "to do" things that I needed to accomplish that are urgent and I assured him that I would the next day (and I did!). He got up and went to go do his thing and I did my thing and eventually I went to sleep. While I was getting ready for sleep, though-- flossing, brushing my teeth, washing my face, etc.-- I came out and watched him play with the kittens for a while, which was adorable. We talked about them for a bit, too, and then I went to bed to sleep (versus going to bed to just lie down, which I do frequently). 

I woke up a few hours later 'cause pain and hunger and bladder, and as I stumbled into the kitchen I blearily noticed the sensation of my feet felt a bit different. I shuffled a bit further and realized-- Drogo had swept the floors! Granted, it's his chore and we'd both agreed it needed to be done that day, but he did it! Yay! I shuffled delightedly to the sink, only to be shocked into an utter standstill. The dishes were done. Normally I wash my dish right after I use it, but the past day or so had been especially bad for energy and muscle fatigue, so I'd let a few bowls and plates pile up and was dreading the thought of washing them all up. Now, though, I didn't have to, because the dishes were done!

And now I felt bad for being irritated with my husband at all ever. He wasn't far behind me in entering the kitchen, so I maneuvered my way back across the clean floor and kissed him passionately (do men know how sexy a clean kitchen is? Men everywhere--- this will get you into a woman's pants faster than roses and chocolates and fancy pick up lines! Okay, maybe not the chocolates, but it's really, really impressive!!) and thanked him profusely. I also thanked him again in the same manner the next day, and both times he was adorably bemused at my gratitude, but hopefully he'll store it away for future reference. He just said, "You were getting behind." Hah. Yes. Yes I was, and I'm grateful for the help.

So he's coming out of his grumpy shell bit by bit, but here's the bombshell… he broke his two cat rule. He has this big thing about only have two cats at a time. He claims it's to keep me from becoming a Crazy Cat Lady, and he's probably right, but I resent the Two Cat Rule with a passion, 'cause kitties! Anyway, we're re-homing the black cat that doesn't like people and keeping one of the kittens, right? Right. But the kitten will be oh-so-lonely without mama and its litter-mates because that's all it's ever known! So I proposed to Khal Drogo that we keep two kittens, especially since Juneaux is terrified of kittens and they'll need each other, at least until they're more significantly grown. He's been thinking about it, and today he mumbled that he guesses we can keep two kittens… and then he picked out the one that he likes the best. He broke his own rule! Ha-HA! 

Sorry. I just feel rather victorious at the moment. He didn't let me celebrate, though. I squeee'd once, very loudly, and he told me to "stop freaking out, woman". So I did. I replied "I will stop freaking out because I know that if I continue to do so it will jeopardize the decision you have made. Am I supposed to act like this is no big deal?"

"Yes."

"Cool. No big deal then. Can I smother you in kisses?"

"I'll be in there to kiss you in a minute. I'm leaving for work."

"Besides that one. Can I smother you in kisses?"

"…I'll be in there to kiss you in a minute. I'm leaving for work."

"…Alright, fine."

So I admit that I was writing out of my own annoyance yesterday, and he is being an adult and getting over himself, at his own pace, in his own way… and he's making overtures of kindness toward me, I think to make up for the grumpiness that he knows has hurt me this past week and more. I haven't discussed that here, but there have been incidents. It's been rough. Anyway… our marriage isn't in danger. We're just people, like anyone else, refusing to give up on each other. And isn't it super sweet that he swept the floors and did the dishes and is letting me keep kittens? My heart is so totally melted right now!!!! <3 p="">

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

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

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

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

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

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

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

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

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