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."

So guess what, folks? The Princess (that's me!) went on vacation. An honest to goodness, get away from it all vacation. I really, really did! It would in no way have been possible without my amazing sister in law, who I did not know cared for me as deeply as she does, but she spoiled me in almost every fashion imaginable.

First off, she had started saving for this weeks and weeks ago, and while I was there I paid my own way on things twice. Twice. In an entire week of going places and seeing things and doing stuff and buying food! Second, she was very careful to keep my physical labor to a minimum, to make sure that I rested as much as possible, and that I was able to access the places we visited. She carried all of my luggage and would only let me carry pillows and the like, even loading and unloading my walker every time we got in or out of the car! I must admit, it was pretty fantastic to have a sherpa, as I jokingly called her throughout our time together.

It was a bit of a whirlwind trip, but it was so incredibly nice to have no responsibilities, to not have to pay for anything, to have fun things to look forward to every day yet not have any kind of a rigid schedule so that our whims and my health could lead the way as to our activities, and to just kind of… well, I have this mental image of, like, my normal life and home and such with this blank white cutout space in my shape throughout the entire week where I would normally be during that time, and the cutout of me was pasted into this whole other life and reality for a week. Does that even make sense? It was so different from how my life usually proceeds that it felt like almost an entirely different reality, which is what vacation is supposed to be, right?

It felt restorative, rejuvenating, and soothing. I was the closest that I've been to my pre-Spoonie self than I've been in years. Granted, it took a lot of assistance to get that, but that doesn't diminish the experience at all. It's a series of memories that I will cherish for a long time to come, I can guarantee that.

Our week went something like this…

Sunday: Colleen (sister in law) arrives and we more or less intend to leave that day, but don't because I'm feeling poorly and it takes me forever to pack, and also what's the rush? We make a list and Colleen packs for me, which is awesome.

Monday: We leave in the morning after stopping by the local muffin store (Yum-azing!), I sleep all the way to Tucson. We go grocery shopping, Colleen cooks supper, take a walk around University, get locked out of house upon return and Colleen ends up breaking in through a window that was unlocked.

Tuesday: Visit an art store for shopping, go clothes shopping for me at a thrift store nearby, have dinner with Colleen's best friends and I have my first margarita. The night is capped with my first hookah smoke and we talk late into the night.

Wednesday: Walk the main drag near the University and visit the tea house we've had our eye on, go to dinner at a fancy place and run low on time, get trapped in the parking garage because of a faulty ticket and barely make the play we've been looking forward to seeing (and pre-purchased tickets for). End the night by returning to the main drag and hanging out at a coffee shop smoking hookah and eating Mediterranean pastries until the shop closes late.

Thursday: Drive to town an hour or so away to spend a few days with my friend Rose. She was interning with the Victim Rights department during the trial that put my molester in prison, and so she was sort of a victim advocate for me and we've kept in touch and maintained a friendship since. Get settled, I get a haircut and Rose takes me on a mini tour of the Army Fort and beautiful surrounding scenery. I fall asleep in the car and nap upon our return, wake to find company over for dinner, and we all hang out until dispersing for bed some time after company leaves.

Friday: Take a 2 mile walk with Rose (yeah, that's right! I'm fuckin' proud of myself!!!), nap briefly before we all pile in and drive to Bisbee to check out the stores and sights. Colleen buys her first "real" piece of art and is now an official adult, and I find some amazing souvenirs and a smaller cast iron skillet of a size we don't already own that I take home for Corey. (He likes it a lot, and used it for the first time tonight to make a sort of omelette.) After coming home, Rose's "Gathering Of The Awesome" party starts a while later, consisting of awesome women that she knows and invited to an evening of yummy light food, good drinks, good conversation and company, and a fun art activity that was also insightful and connecting.

Saturday: Leave Rose's and head back to Colleen's house, go grocery shopping for afternoon picnic planned. I nap for a few hours, then she, I, and one of her best friends that we went to dinner with go up Mount Lemmon and have a picnic, sort of start a fire to keep ourselves warm, and watch the sunset on the drive back down the mountain.

Sunday: We both sleep in, and eventually she packs up the car and takes me back to Yuma but leaves shortly after because of work the next day.

I was feeling pretty good throughout the week, at least as far as "good" for me goes, but as the week went on I could feel myself wearing out. By Friday night I was running a mildly low grade fever and felt pretty gross. Saturday night I declined a proposed meet up with a friend of Colleen's in favor of staying in bed because I felt shitty, and Monday, the day after I got back, I pretty much did nothing but sleep in hour-to-several-hour increments for about 24 hours. I'm still recovering, but part of it is that I don't have that medication that helps so much with the stiffness and pain in my joints anymore, so I just feel more arthritic and whatever than usual anyway. Also, period should be coming soon, and I'm always exhausted the week before my period and sleep more than usual, so I'm not surprised there, either.

I cheated a lot with allergens on vacation, so I'm returning to being a "good girl"… but oh man, I had some of the best food in a long time. Have you ever had fresh sopapillas? Then you are missing out on the culinary equivalent of salvation for your soul, I swear to you. They are so. good. I've also been on a huge muffin craving kick since we hit that muffin place on the way out of town. I had forgotten what I was missing, but now I am constantly reminded of my suffering due to lack. Alas, alack, woe is me, woe betide, and all that sorrowful jazz…

It was a good trip. It was a very good trip. I don't expect to have an experience like that again anytime soon, but I will surely treasure it. I feel different somehow from having  had the experience, but I'll think on that more later. I am so indebted to my ladies, Rose and Colleen. My gratitude knows no bounds. I know that they really went above and beyond for me… and yet for them, I'm sure it seems somewhat of a simple matter. It's funny how perspective works. From my perspective, it was a chance to live life again, to have fun and forget the frustrations and complexities of trying to juggle doctor's appointments and bills and finding rides and medication snafus and all that… to simply be a young woman again and enjoy things… to just have fun, pure and simple! From their perspective, it was doing things that maybe they don't get to do every day but have been wanting to, but it wasn't particularly mind-altering I don't think. It was pretty much business as normal, but on vacation time.

Regardless of who felt what, there is one thing that we should all be feeling right now, and that's pride. Pride in me, of course. Why? Because it's only been 3 days since I got home, and I'm fully unpacked! Yeah, baby! (This is fairly unheard of, just for context.) Now that I'm home, back to responsibilities, I feel a little better equipped to handle them now that I'm not so frazzled and frayed because I had a pleasant break. On the other hand, it makes me not want to deal with real life at all anymore and just continually live the vacation life on someone else's dime… Heh. If only, right?

Today is the 8th anniversary of The Accident. Back in 2006 I was attending a small Christian boarding academy (high school) about 4 hours away from home. There were several of us kids from Yuma there, so the parents had worked out a carpooling system for the occasions that we came home such as holidays or Home Leaves. This particular event was a home leave, and several of us piled into the Astrovan owned by a good friend of my family, whose son and granddaughter both went to school with me. The other Yuma kid declined to go with us because he had some other plans, but a Korean foreign exchange student that was good friends with the son and on the same Acro team as the son and I joined us for the trip. He was excited, because he wanted to see more of America before he graduated and went home at the end of that school year. He couldn't stay and tour afterwards, because apparently Korea has a law that mandates all young men to do a certain amount of military service once they are done with basic schooling, and I'm also pretty sure that he didn't have that kind of money.

The stretch between Phoenix and Yuma is pretty barren and empty, but there is a town almost exactly halfway between the two, and we stopped there for snacks, bathroom break, gas, and Fred, the dad, put air in the van's tires because he thought they looked a little low. (There are SO many details that I'm omitting, but I don't feel like typing that much, and it would be a small pamphlet at least if I did.) It was not too far underway from that town that the back left tire blew out, and the van swerved then rolled and flipped several times. I was hit in the head with something flying around the interior. (I think it was the old school portable tv, the heavy ones? Or maybe it was some sort of tack because Fred hadn't emptied out the van from the last time he had been at the stables to tend their horses. I don't know; I'll never know.) The blow to the head caused me to lose consciousness and go blind for a period of time I estimate to be about half an hour, 45 minutes maybe? I was very devastated because I thought I couldn't read anymore. (A famous line/joke from the experience is when I was led to Fred after being freed from the van and I told him I was blind. I was crying about how I wouldn't be able to read anymore, and Fred comforted me by saying that he would read to me. My response was to wail, "You don't understand-- I really like to read!!" LOL)

As far as injuries go, I was blind and had a severe concussion, was having an asthma attack, had an internally bleeding mushy spot on my skull from being hit, whiplash, of course, and there was some injury to my ribs as well. Oh, and I cracked a toe. The granddaughter, A, had unbuckled her seatbelt to lean forward and grab something just as the crash happened, so when the glass window from the sliding door popped out she was thrown through the opening during one of the flips or rolls and then the van rolled over top of her. She was Life Flighted out of there (as as I) and ended up in ICU for a week with a lacerated spleen and a fractured pelvis, along with the requisite whiplash and concussion.

The two guys, J and the Korean S, had bad whiplash and S had a bloody nose. I'm not sure if they had any other injuries, but they didn't say so, and they still went to play in the tackle football game a day or two later that they had been planning on. They are both big guys-- tall, solid, lots of muscle, and sturdy-- so they were an important part of our school's team and they didn't want to let the team down by not playing. *smh* Men.

Fred threw off his lap belt when the van began to swerve and leapt into the space between front seats to help control the van, so he was unbuckled and tossed like a salad as we flipped to and fro. He also ended up in ICU for a week, but they didn't fly him out because he looked okay until after A and I flew away. He collapsed and they ambulanced him to the Phoenix hospital as fast as they could, and all I remember now of his injuries is that his spleen exploded into a bunch of pieces. SO not good. He went into emergency surgery, obviously.

When I came to after the crash itself, I was blind (blackness, everything blackness with purple lightning bolts shooting through and across in every direction) and disoriented and sooooo tired and sleepy. I tried to unbuckle my seatbelt for a minute or two but it was too hard and I couldn't do it, so I began to drift off to sleep. Turns out I was the only one in the van because A had been thrown from the vehicle, J and S jumped out as soon as the van stopped, and Fred jumped out to help as well. We landed on our side, with the driver's door on the ground, and the window beside me had broken but the blanket I was using as a pillow while I napped kept the broken glass from reaching my face or neck.

The van was steaming as it was resting and J thought it was smoke, that maybe the van was going to explode and I was still in it. Everything smelled like gas. I used to love the smell of gasoline, now I'm not so fond of it. J came in and kept me awake with talk, which annoyed me to an incredible degree, while he cut me out of my seat belts. What had happened is that Fred's lap belt got tangled up in my shoulder belt while everything was being shaken up, and I couldn't see to undo it and J felt that it would take too long. The van was about to explode, remember?! Because of my weakened state (concussion, asthma attack, shock, etc.) I was unable to lift myself out the hole above me that had been the sliding door's window, so J kicked out the windshield and took me out that way. I jokingly flutter my lashes at him and swooningly croon, "My hero!" when that story is told around him, hehehe.

There are a ton of funny and touching stories that go with all of this, and maybe I'll share a story every day or every other day this week in honor of Life and Second Chances. For right now, I'll sum up by saying that even though there were some scares and lots of camping out in the ICU waiting room, we all survived that harrowing experience with very little in the way of long term damage. It's practically unheard of! We were and are very fortunate, and that is why Fred and I like to Celebrate Life on our Anniversary, though the others (J and A) don't see the point or enjoyment of it and choose not to celebrate it. J feels very guilty because he was driving, but it could have happened to anyone. Really. A lives far away, and S is back in Korea, so… Actually, I think they are both in Korea, come to think of it! A married a military man, so…

Anyway, if nothing else at all I learned the value of every split second. We carry on as though life is assured, and rightly so I think or else we would be paralyzed by the thought of impending mortality, never enjoying a thing or being productive, but it is the realization that life and consciousness can be taken away in the space between two breaths that really gives context to the value and delicacy of life itself. For instance, yesterday was David S's birthday. My adopted dad who died of cancer last year. Yeah. The birthday of a dead man whom I loved dearly, and then the next day a Celebration of Life, another "birthday", if you will" with other people that I love dearly, who are all still here and kickin'. It's just so… puzzling. There doesn't seem to be much rhyme or reason to it, except the certainty that

Life will end. Yours, mine, your fish, the Pope, and certainly that pretty caterpillar you saw last week… our lives will inevitably cease at some point. Mine could have stopped on October 25th, 2006, but it didn't, and I'm very grateful for that. My essence, the core of who I am, my conscious soul or whatever, that could be snuffed out by any number of things even while I type this blog post. But I'm still here, so I'm gonna enjoy it and try to be a good person and make life as good as I can for those around me who are still going as well. It's as much of a goal as anything else, right?

Happy Anniversary, Life!

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'm so behind on keeping up with my favorite blogs! I'm cherry picking the ones that I want to read right now, but the list just keeps getting longer and longer and I'm not certain I'll make it through the entire set before I'm asleep again. (It took me nine hours to check my Facebook notifications the other day because I couldn't stay awake long enough to check more than 3 or 4 at a time!)

I've been fighting fatigue. Bad, bad fatigue. The kind of fatigue that you don't actually fight, you just accept as reality and accommodate as much as possible, because the need for sleep is overpowering and overwhelming and can come on you with just a moment's notice. There is no way I can drive in this condition, as I find myself falling asleep in the midst of the most ridiculous, mundane tasks-- eating a bowl of cereal (spilled all over myself because I nodded off), going to the bathroom (almost fell off the toilet), standing in the kitchen and holding a conversation, pretty much any time I sit down for anything, and even a tad while out for my evening walk with Drogo. It's far, far past ridiculous and well into debilitating. Let's just say that this is further proof that my body refuses to do anything halfway.

It's a combination of the high levels of pain killers that I'm on and the other new meds and also the shifting weather of this time of year. I know it's not just the pain meds, as I went several weeks a little more tired than normal but not slammed with fatigue like this. It's always hard when you have to make adjustments to the regimen, but I'm confident that things will get sorted out in time. It's just the waiting for it all to settle down that's difficult. I feel like I've hardly seen any of Drogo at all, between his odd work schedule and my complete inability to stay awake for more than 15 minutes at a time. We may live in the same house but there's so much more that makes up a relationship and I miss him terribly!

The pain, however, has been good. I wasn't sure I'd ever be able to type those words again, but there they are! (pop the sparkling cider, throw the glitter and sparkles and confetti- careful not to get it in the cider!- and call in the dancing girls!) Last week was still very painful, but bearable, but this week has been, well… nice. Maybe it's because I've been asleep so much that I haven't noticed the pain? I dunno. A funny phenomenon I've noticed, though, is that now when my pain dips down below "I'm in extreme pain" levels it's almost like my body then ceases to realize that I'm still hurting. I mean, it's there, I can feel it, but suddenly it's not important anymore and now I expect myself to function at a higher level. Does that even make sense? I suppose it's because I've been in crazy high pain land for so long that dropping down to less severe levels feels like a picnic. Like a paper cut vs. a broken arm. (Well, okay, to be more realistic, like a stitched up gash vs. a broken arm.) And I honestly don't know what to do with myself. I feel like I'm malingering now if I insist that I'm still in pain and need pain killers, because I'm so vastly better compared to last week even. I know intellectually that it is continued, routine use of the pain meds that will keep me at these levels and hopefully take me down to even less levels of pain, but I do feel like a medicine chaser now, I do.

All of this brain stuff that goes along with being sick… it's too much for me to figure out. I need a shrink to help me wade through all of this and made sense of it.

Even as I type this, I feel myself flagging and growing more and more tired. I expect that I'll be close to napping again here in a few minutes, so a few quick updates…
-The craft business is getting off of the ground! I've made a friend here in town who is going to go in on it with me and we'll share the table. She's sold before, so there's the benefit of experience, plus she can give me a ride and load/unload the table, which I'm unable to do. I've been busy making all sorts of adorable little things to sell, and I'm excited.

-My neurologist thinks that I'm definitely doing the right thing in pursuing an EDS diagnosis down at University of Arizona, and encouraged me to keep going for it. I see him again in 3 months, and he put me on a medication that should help with the twitchies a bit. That's one of the meds making me so sleepy.

-My psych put me on an antipsychotic to help stabilize my mood and keep me from hitting those more manic-type highs, along with refilling my antidepressant. The term he used is Mood Disorder Not Otherwise Specified, because my case is too complex to be cut and dried anything. He is going after genetic testing to see how I metabolize medicine and if I'm missing any enzymes or anything that might be altering the optimal flow of medication in my system. That would potentially also explain a lot when it comes to my needing crazy high doses of painkillers to make any kind of a difference.

-This weekend is a party/get-together for the BDSM community here in my town, and I'm super excited to attend. I've never been to one yet, as there's not a whole lot that happens in our scene here (it's pretty small) and Phoenix or San Diego is a long way to travel for us right now for anything other than necessary doctor's stuff. Pleasure trips are out of the question. I am going to the secondhand store tomorrow to scrounge up something super sexy and smokin' to wear. Drogo will be wearing his standard jeans and a t-shirt, I imagine. I am nervous, but I know a few of the people there, and Drogo will be there, and I can leave whenever I want so it's not that big of a deal. I'm thinking that maybe we'll finally find a willing lady to play around with Drogo and I once in a while. It's been a long, unfruitful search so far, and every possible candidate has simply left me hanging after stringing me along for a while. If this is what men go through when trying to woo women, I feel sincerely sorry for them. It is frustrating beyond all reason to have a girl act as though she is interested and spend some time getting to know you and then BAM! You never hear from her again. She doesn't return calls, emails, texts, nothin'. No explanation. I don't get it. Women are confusing, bottom line. Poor men; you have my sympathy.

-I found a great supplement/multivitamin that is soy and gluten free, so I've started that up to nourish my body while it fights for health. I realized that I wasn't supporting it in that way, which is just silly because I need supplement support more than the average person would! So I'm pleased about that, because it also keeps me from having to buy all of the vitamins and such I was taking separately and saves me money!

-Disability is still out for review. I intend to call sometime this week and check on it to see about how much of a way we've got left, if they can tell such things.

And sure enough, my eyelids are drooping, it's getting hard to focus my eyes, and my head is getting fuzzy. Time to wrap this up and hit the sheets, the nice quality sheets that I scored for a super low price thanks to that Kohl's cash they send out and a friend's coupons that she sent me. They are the nicest sheets I've ever owned, and I love sleeping between them! Next thing will be to get some decent pillows, because ours are completely flat and lumpy and just worn out. Not good, not good at all. Pillows, and then a pillow top for the mattress, and then a good sturdy comforter for the bed. That's the plan for the next few years. I'll have to do it a bit at a time, but it'll get done. A good night's rest is essential to daily functioning!

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.

That it is, that it is. But on the same token...

I haven't been around these parts much because, frankly, I just haven't had the energy to write much. This used to be a favored haven of mine, and now it's kind of a last resort, a place to turn to when I have excess steam to blow off and nothing more.

I'm sincerely hoping that this medicine my pan doc has me on will prove its mettle and do as she says it will, taking away some of my full body pain. It's a regimen that she says has helped many patients before, so… On the one hand, I'm really disappointed that it isn't working yet and I'm incredibly frustrated that I'm sicker than ever and in more pain more consistently than I've ever been in before, but on the other hand I have a perverse satisfaction that says, "Ha ha! I told you so! I told you I was sick and that I was super dubious about this treatment plan! Who's the man? I'm the man!" Definitely conflicting feelings there. And while every day brings its own special brand of misery (for instance, it is  very, very painful to breathe right now, both inhaling and exhaling, and my shoulders are on the upswing of a viciously aching bell curve), if I don't feel the absolute worst that I've ever felt I find it difficult to admit that I really do feel all that sick. I mean, I do feel poorly, yes, but I'm really not that sick, right? Because I'm not in so much pain that I'm vomiting. Or because I can still walk. Or because I can lift my arms above my head. Etc., etc. I'm telling you, being chronically ill and in pain brings some weird twists of thought and feeling to you after a while.

Other than just trying to hang on and make it through the days, it's just been… pretty pleasant, actually. I've been maintaining the cleanliness of the house pretty well. I'm proud of myself. I've learned that doing a dish right when I'm done with it takes far less energy than leaving it for later when I might feel better (because let's face it, I'm not going to feel better later), and it looks a lot better, too. I'm eating better too, I think. I still have zero energy or stamina for cooking, and not much appetite (I'm nauseous a fair amount of the time), but I've learned that sandwiches are a good way for me to get some veggies and protein into my diet, which I was severely lacking before. Also, I tend to have some sort of fresh fruit on the side with my sandwich, and that helps with variety of diet as well. I feel like I'm doing better with my diet this past week, even if I am sicker than I've been. It really helps that some friends have given me fresh kale, spinach, and swiss chard from their gardens and that's what I've been using in my sandwiches and stuff. I'm like, "I gotta use it before it goes bad!" Hah. Oh, and I finally cracked open an avocado for the first time in forever since David died, and I only cried a little.

I've realized there's some very good things in my life that help to balance out the bad things that are so easy to focus on. For one, there's my friends that have been showering me with random acts of kindness. The Artist took me out to tea the other day (well, it turned into lunch at Olive Garden actually, because the tea place was closed, but whatevs) and when she came to pick me up she brought me the sweetest little miniature white orchid plant. It's absolutely gorgeous! Funny thing, too, is that ever since I lived with this elderly couple in Visalia that had orchids all through their house I've wanted orchids of my own. It's been years and I've never been settled in one place long enough to realize that dream until now. Yay! A long distance friend of mine from SOULS that I call Pookie sent me a mug in the mail that reads, "The past, the present, and the future walked into a bar. It was tense." Hah! I got that today, and I already inaugurated it with a cup of silver needle white tea which was super delicious.

Another thing I realized the other day while talking to Rose was that, if I hadn't married Drogo… I don't know what kind of position I'd find myself in now. How would I support myself? Where would I live? How would I pay for my special food and for my medicines and my doctor's appointments? How would I take care of myself on a day to day basis? The timing of our marriage and my subsequent plunge into disability was fortuitous, as far as these things go. I'm a very lucky spoonie. In a similar vein, we are in a pretty good position to be handling this very challenging situation. We own our own home (and before 30 at that!), we have minimal debt, we are able to live off of one income comfortably even with the crazy doctor's bills (well… okay, we manage), we have good health insurance, and we don't have any dependents. Again, I'm a very lucky spoonie.

So while it could be better (healthy bodies, anyone?), it could also definitely be worse. Drogo and I don't have to choose between medicine and rent. I'm able to get the health care I need in the big city even though it's a stretch financially. Most importantly of all, I have a significant other who cares, who does his best to understand and support me, and a far-flung network of friends and family who do the same. I'm a very lucky spoonie.

Note: If you need a quick refresher on who's who, check out the post Appellations for the list of names and nicknames I've assigned everyone.

Here's the summary of my weekend that I posted in various forums and places on Facebook this weekend:

"My home has been invaded by long-distance cleaning fairies. They came over to see me and Drogo and to thoroughly clean our house and give me a massage. Basically? I cried at the incredible outpouring of love and care and consideration, and now I'm sitting here eating grapes, listening to Def Leppard, watching them clean and dance and be silly, and watch my husband assist/fetch cleaning supplies/be shooed out from underfoot. (I'm not allowed to help.) feeling overwhelmed by love with Lacey and 2 others.

So they just left… but three friends of mine conspired with my husband to show up and clean my house for me. They are from several hours away and were going to be coming to town for other reasons, so they were going to come and see us *anyway* to say hello, so they figured they'd just take care of me while they were at it  One of them, who I actually met for the first time yesterday, is a licensed massage therapist that has worked with fibro patients previously, and she gave me a foot massage yesterday and a back massage today. They did the dishes that I've been too sick to do for three weeks (yeah, ALL my dishes have been dirty for three weeks-- gross!), and I didn't realize how dirty my house had actually gotten until they cleaned it! One of them took nearly an hour to soak and nitty gritty scrub my bathtub so I could soak in super duper cleanliness, bless her heart.

I did what I could to express my thanks (beyond crying when I comprehended what they were here for when they showed up yesterday, of course!) so I made them little gift baskets last night and wrote them thank you cards with their names in hand-lettered calligraphy on the front and stamped wax seals on the envelope flaps. (Wish I'd thought to take pictures. Oh well.) They were so pleased! You'd have thought I'd given them the moon  The lesson I learned from both giving and receiving this weekend is that while it pays to give, it also pays to receive graciously and with humility and pure gratitude. It meant a LOT to those girls to be able to do something so obviously meaningful for me, even with no apparent reward anywhere in their future beyond my and Drogo's gratitude."

Yes, I cried when they revealed their intent. And I TOTALLY guessed who was mysteriously coming over! Drogo was having a prolonged text conversation and sporadic phone calls and wouldn't tell me who was coming over and I was like, "Is it Lacey?" (she lives hours away and we rarely get to see her) and he was like, "Why would it be Lacey?" Literally minutes later a knock sounds at the door and in walks Lacey. I knew it!!!!! And when they told me that they were there to clean the house and that the new friend was there to massage me, too… I just broke down. I still burst into tears when I look around and see the cleanliness of my house. My heart just cannot hold that much love! Dani, Lacey's girlfriend, scrubbed and soaked and scrubbed and scrubbed my bathtub and shower until it sparkles and gleams because she knows that I soak in it a lot. 

See, I had sent out a plea on Facebook the other day, giving up my pride and just asking for help from my friends because I can't do this anymore. My pain levels are too high and I'm too sick and I just can't make life work all by myself anymore and I need help! I had dishes in the sink that had been there going on three weeks, and I was too weak to wash them. I was/am too weak to cook myself food, so I'm relying on easy-make foods like sandwiches, cereal, fruit, yogurt, certain veggies, etc. For various reasons, people were unable to come to my rescue, but these ladies began plotting and subsequently Facebook stalking me to make sure that no one else stepped in to do the job they intended to do, which no one did. So they bought all manner of cleaning supplies and brought grungy shirts and braved the dust and the mold and the kitty dander to which they are all allergic, and my home is so lovely and bright and inhabitable now, it just brings a smile to my face when I hobble through :)

I wanted to "pay it forward" somehow, desperately, to give something back somehow, so I put together little gift packages for each one of them that night after they left. (We went out to dinner together, too, so that was fun. Fortunately, due to some extra pain killers headed my way via an anonymous source the day before, I had my best day this entire month, no exaggeration, and I was able to be up and about with them in a halfheartedly normal manner.) They opened their gifts and read their cards while they were visiting with me this afternoon before they left to go home and I couldn't believe their heartfelt appreciation over something so small. I mean, they had given me something so incredibly heartwarming and valuable… I felt as though my return gesture of appreciation was so feeble and faltering in comparison! But it was not so to them, and that is what matters.

The amazing thing is that just the gratitude that I had for the gift they gave me of their time and effort and taking care of something that I was not capable of doing on my own was enough for them. That was all they expected to receive, and it was more than enough for them. It meant so much to me, what they did, maybe more than they will ever understand. To go from being an active achiever, someone who "gets things done" to being unable to do your own dishes is… well, it's humiliating. You begin to question your own worth as a person, as a wife. What is the point of even keeping me around, you wonder. Why does my husband want me here? All I can do is sleep and generate mess. But these girls… they came in and gave me a fresh start. I can maintain the cleanliness, to a degree. When I use a dish, I clean it right away so it doesn't build up. They laughed with me and cracked jokes and told stories and, most of all, reaffirmed my worth as a person. They wanted to spend time with me. They came all this way for me. They wanted to do this for me, of their own free will. They went out of their way and went to trouble for me because I am of value. It cheered me up to an unspeakable degree. It's hard to explain.

As a side note, I also found a bit of usefulness as a chronic illness advocate as well. The massage therapist, Meli, has worked with fibro patients in the past but doesn't know much about the illness itself. Her mother deals with many chronic illnesses but is, as Meli describes it, a hypochondriac. She is the negative stereotype of chronic illness patients embodied, the type where they say "it's all in your head" and it's kinda mostly true. That's unfortunate, but that's kind of the place where she has had to base her knowledge and dealings from, because that's all she really knows of chronic illness. During her time with me, she asked me questions and I answered as best I could, and of course she saw me deal with everyday life in my fashion. In addition to that I mentioned something about spoons, which lead to my reading her The Spoon Theory by Christine Miserandino, which is like the American Constitution for chronic illness patients lol.

Well what is really neat is that today she told me that I have really changed her perspective on chronic illness, enlightened her, so to speak, and I feel much like how I used to when I worked with The Healing Journey and did advocacy for abuse survivors. This illness has taken so very much from me, and I suppose you could even say it has ruined my life. At this point, that could be a very accurate statement, though in the future that may no longer apply. (Fingers crossed!) However, as with the negative things that stem from abuse, I've managed to turn those potential life-ruiners into positives by using them to inform and educate others and advocate for rights, change, research, healing; whatever is necessary at that time. I'm a badass, man. Life can't keep me down, no matter how hard it tries! I'm just super grateful that I have helped Meli to understand fibromyalgia and chronic illnesses better, because as a massage therapist and a health practitioner, she has the potential to affect many lives in the future. By affecting her point of view, I have theoretically changed dozens, if not more, of lives of people that I will probably never meet. Crazy, right? All by simply being my awesome self and being honest yet upbeat about my struggles and health problems.

Things are looking up. I may not necessarily be on the mend (if this month is any indication, because it has been hell), but I can still be a positive force in the world even from within my prison of pain and other various symptoms. Watch out, world!

On another, slightly more humorous/bitter note, I made something for my new pain doc. I think she'll get a kick out of it. We hit it off pretty well, and she seems to have a sense of humor much like mine, though I would not dare to pull this on any of my other doctors. They'd make me pay in one way or another… but I figure this will emphasize the truth of my statement that this month has been the. worst. month. of my fibro. ever. EVER. (ever.) (The date is set for my next appointment. I'm fairly confident that the pain won't be going anywhere before then, soooo…)

…I spent the afternoon/evening with a friend of undisclosed name drinking wine coolers (and rum, they had rum mostly) and watching movies.

I regret nothing.

In fact, I feel happier and more relaxed than I have in a while. And especially after the day I had yesterday? It is a huge relief. Enough to make me want to drink again, and soon… which the Dragon does not approve of. lol. Of course, I'll honor his wishes… probably. Sorta.

But man… I feel… relaxed. Happy. Sleepy. I like this "drinking thing" when I do it right and don't make myself sick. I didn't even get drunk. I just got… happy.

It was nice to feel happy again.

So today has been one of those good, lazy days. The gang came over for DnD last night, but I was far too tired to make it through more than the first few steps of the encounter. M put me into "Hammer Space", which is basically the "cartoon pocket" of the universe. So I was there, without actually being there, and the real me took off to go take a nap. M gave me one of her muscle relaxers from the accident, since I was hurting and stuff, and it really helped me to get to sleep. I've been having trouble sleeping the past few days from pain, so it was a relief to sack out for a while, and laying down no less! The past few nights have been spent propped up on the couch so I could drift off, since it hurt too much to breathe when I was lying down.

So I slept for several hours, woke up to eat something, went back to bed for several hours, woke up for a little while and had breakfast, then went down for a few more hours. I was awake for a few hours when I went to go take another nap with C, who hadn't climbed out of bed yet. I didn't actually get to sleep, but we did stay in bed for a while, which was nice. (My mood is greatly improved from yesterday, as C has proved that he is still a willing participant of marital privileges. It's been a great relief, I'll tell you that for sure.) Also, a big plus to sleeping in bed is that when C came to bed we were able to cuddle up together. I haven't gotten to sleep-cuddle with C in probably just as long as we've been abstinent, since I've either been in too much pain to touch, not in bed at the same time as him, or sleeping out on the couch. It is such a simple yet profound joy to briefly stir to consciousness and feel your love's warm arm draped over you and his feet entangled with yours. Words cannot describe it, but it's one of my favorite parts of being with C. Is that weird? I don't care. It makes me happy.

When we clambered out of bed we both hopped into the shower and then watched an episode of the show we're watching together. He wandered off to go play a game on the comp and I've been watching Netflix. I'm tired, though, and my tummy's a little upset, so I think I might brew up a mug of tea then crash for however long I end up sleeping. The "nice" thing about being disabled is that I don't have anything pressing to be up for in the morning and I can sleep whenever I'd like. (Well, whenever I can, as the case may be…) There's always a positive, right?

M brought a book over for me to read, and as weird as it is I find myself strangely fascinated with it and I've been reading it off and on throughout the past few days. It's set back in the ancient days of Egypt, but it totally references contemporary Biblical events of the time, which is cool.

I'm totally yawning my head off. Time to hit the hay for a while. I like lazy days… when they're spent with company. It gets kind of boring when you're all by yourself, day after day. I would know.

Ren faire!!! Well, the little local one, anyway. My friend K devised an ingenious footrest/sling for the Chariot so that I was able to sit and be pushed around by C most of the time. Despite that, I am very much paying for my outing today, but you know what? I totally don't care! It was worth it.

It was so nice to get out of the house, and I'd hoarded pain pills against this day. I also didn't use them all, so I should (hopefully) have enough to get me through to my pain appointment tomorrow, but only just. I'm trying to spend most of the time in a drugged sleep, surfacing only long enough to pack and prepare for my appointment. I know I'm overdosing on stuff that I'm not supposed to be overdosing, but it's either that or stay awake with the pain and let it feed on itself… which means that it'll take more pills than I have to break the pain cycle. Sometimes, though, I get this nice little buzz, a cozy sort of warm fuzziness, off of the sleeping meds (depending on circumstances, how much I've taken, how much is still in my system, etc.) and it feels good. That in and of itself kind of scares me, but it's nice to feel something other than pain for a change. As of right now, I can feel the last batch I took (about half an hour ago) starting to kick in. My intense headache is being muffled, my eyes are getting kinda heavy, and I just feel a little… fuzzy. And slightly dizzy. But mostly fuzzy.

Want to see pictures of the foot sling? Check it out-- kickboxing wraps for the straps, a couple of carabiners, and a wire shelf that looks suspiciously like a baking rack.

Also, the urge struck me (and I had hours to kill while C was sleeping), so I took the time to do my makeup today. I have some eyeshadow tutorials on Pinterest that I used as an inspiration, since I pretty much have no idea what I'm doing, but I think it came out well. I just hate putting on makeup because it takes so much effort to take it off again! Wish I'd gotten a picture of me in garb as well, but I didn't think of it… so here's me in my pajamas! lol

Don't worry, I'm better now.

C came home, and I spilled my guts to him. He sat on the couch with me, my legs across his lap, and rubbed my aching knees while I cried and blathered on about what was going on with me. He listened attentively, gave me wonderful long hugs and cuddles, and then sent me to the tub for a soak to ease some of my pain and help me unwind further. Oh, how can I forget the awesome words of affirmation he gave me as well? I'll get to that, though. It makes more sense in context.

While talking to C, I was able to kind of pinpoint some of the factors that brought me to the sad place I was in last night. First of all, I did some research yesterday morning on alternate names for soy and gluten hidden in foods. It was... discouraging. The list is incredibly long, especially for soy, and I've been unknowingly ingesting soy in some of the foods I had previously thought were safe. I'm not as concerned about the gluten, and the list is shorter for that one, but I am definitely sensitive to soy and want to stay away from it. I guess I was just frustrated by the thought of having to refine my diet even further, and this means that I am going to have to do more cooking. That thought is daunting, because I often am so tired and ill and in pain that cooking is difficult. Now I have to cook, because I can't just get stuff from the store. I mean, can't I catch a break?!

So there was that. And then I went to work, even though I really didn't feel like it. At the end of the work day, we stopped by the store to buy turkeys for the turkey boxes we're giving away to several families. The lifting of the turkeys in and out of the cart, the walking around, and the waiting at the register for 15-ish minutes while the clerk messed things up several times took a toll on me. By the time I got home I was aching fiercely. I had decided earlier that I would not be able to participate in the bar tending fund raiser that's coming up for the HJ which discouraged me some, because I feel like I'm always letting the agency down and it was just another indicator of how much things have changed for me, how much I can't do anymore. The trip to the store validated my decision, but that didn't encourage me any.

On the way home I stopped by the store to pick up my pain killer prescription, which I had to buy without insurance this time for slightly complex reasons. I had expected it to be forty, fifty dollars maybe, as it was several months ago when I had to do the same thing. Because I am taking a different sort of med, though, it came out to over one hundred dollars. All that for less than a month's worth of semi-functioning capability. If that wasn't depressing enough, that also means that my credit card is now maxed out. It's not like I've used it for frivolous things, but having to live off of it for a while last year, various medical expenses, groceries from time to time, and household items when we first bought the house have all added up. I pay on it regularly, but I don't have much in the way of disposable income so it doesn't make much of a dent. The sicker I get, the harder it gets to pay on it... and the more I end up having to use it. It's a vicious cycle.

I've always had difficulties relating with money, but not in the sense that I have a hard time managing it. I'm good with money, when I'm able to make it lol.  No, the difficulties I have are that I don't feel worth it being spent on me. The high price of my pain meds was a blow to me, because C will be the one that gives me the money to pay that off, and I question deeply whether I'm worth it or not. I don't feel that I am. I hate being in debt for any reason, and I'm in the largest non-tuition related debt I've ever been in. I feel like I'm failing at life (for so many reasons) and I'm just dragging C down with me.

I think the money thing, the high price and the maxed out credit card, was the deeply insecure straw that broke the neurotic camel's back. The blow to my already wavering self-worth and self-confidence was fierce, and then I came home to a messy house that I hadn't had the energy or  good enough health to clean in several days. I was hurting, discouraged, and found myself thinking, "What's the point? Why should I even keep trying? I can't seem to make this work. I'm failing at life, and I'm taking C down with me. Am I worth this effort?"

Well, C's love, listening, and words of affirmation really did a lot to boost my spirits. When I was exploring my feelings about money and self-worth, he told me, "You are worth more than money." He also laid out his financial plan for the next few months, which put my heart at rest some. We're going to be okay. I am not breaking him financially. We're going to get through this. It's going to be okay.

Most importantly of all, the look of pure, overwhelming love in his eyes as he stroked my face, held me close, and kissed me deeply buoyed me up like nothing else could have. Even after I had just spent the better part of half an hour rambling and crying and being sad all over him, he still had nothing but love and support for me. I knew I knew what I was doing when I married the guy. Sometimes all it takes is just for someone to listen, affirm, support, and accept to really turn things around. I went to bed happy and fell asleep quite quickly, which was a relief.

Tomorrow is his day off, and I'm looking forward to spending the day together. (Well, if I ever get back to bed. I spent most of yesterday and last night sleeping, but I woke up a few hours ago from pain so I've just been watching movies while waiting for it to die down enough to sleep again.)

Recently on her blog my sister discussed the book One Thousand Gifts and the personal challenge she has undertaken to find and record one thousand gifts, or things worth giving thanks for, in her life. She asked if anyone else wanted to join her and I said that I might.

This morning I was thinking about some of the wonderful things that appear in my life-- blips on the radar screen to some, but indicative of a life rich with meaning and love. So, yes. I will join in that challenge. It will probably be nowhere as intentional and consistent as others' recordings of their gifts, but that's fine. This is my personal journey, and I'll take it at my own pace.

1. My husband, who is the yin to my yang in so many, many ways. He's a steady rock that keeps me anchored, and he's a warm, tender carer for my many infirmities.

2. Yesterday a stranger looked at me in surprise and said, "You're a pretty girl!"

3. Warm morning sunlight to bask in. It is better than a warm bath to soothe away my aches and pains.

4. Juneaux and his consistent need for cuddles.

5. Juneaux's 6th sense for when I'm not feeling well (or worse than usual) emotionally or physically, and his remedy of cuddles.

6. Coraline. She's such a cute goof. Follows me everywhere, but not in a needy way. She follows discreetly, from a distance... unless I have oatmeal or lunch meat.

7. The flexibility of my job and how accommodating my boss is.

8. Working with abuse survivors like myself.

9. Medication.

10. The ability to afford said medication.

11. A house of my very own, with a yard and everything!!

12. A running vehicle that gives me little trouble, despite the minimal or nonexistent maintenance I give it..

13. Eyesight. Whether it be reading or watching movies to distract myself/for enjoyment, watching birds and clouds through the window, gazing upon my beloved's face, skimming Facebook, watching the kitties' antics, or just making my way to the bathroom, my eyesight gives me access to so much meaning and convenience. I remember what it's like to be blind, and it's terrifying. (Especially the prospect of not being able to read anymore.)

14. Safe food, and the fact that we can afford it.

15. The computer I'm typing on. I thought that I was going to have to go a long time without a laptop of my own, but not only am I getting an insane discount, it's a Mac. My favorite. And better than the Mac I had before, the one that died.

16. Health and safety of my loved ones.

17. My husband finding me attractive, despite weight gain.

18. Improved self-talk, finding myself attractive despite weight gain!

19. C filled up my gas tank the other day, all the way to full! I can't remember the last time my tank was full.

20. That I was able to afford Christmas presents for my family, however small they are.

21. I'll be home for Christmas ^_^ (Sorta.)

22. I'll be with my bestie J for the real Christmas. Haven't seen that woman in a year and a half.

23. J's family is paying for my plane ticket to come out and spend Christmas with them. They decided to do this because they know how hard driving is on me (and it's dangerous these days, what with the twitch attacks and almost passing out and all) and wanted to spare me that.

24. Now 100% detached from financial dependency on anyone other than my husband. Switching car insurances Friday was the last thing.

25. I saved (not quite) hundreds of dollars on car insurance by switching to Geico. No, really.

I have continually maintained that I have a great life. I really do. Certain aspects of it may get me down, but overall I'm livin' the dream. I would change very few things.

Stay tuned for more "gifts"... whenever they come along.