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?

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. :)

They say a picture is worth a thousand words, so I thought that instead of blowing out my breath, I'd throw a few (hundred) pictures at you instead. A collage or a scrapbook of sorts chronicling the state of affairs. It was kind of fun collecting these pictures. I was on Pinterest and I just got this urge to start saving them because I wanted to do this, so… here I am! All of the photos can be found on the Pinterest board Character Inspiration by h. grace, so photo attributions can be found there. (Except for the food and scenery photos. Those I've picked up through the years and have NO idea where I got them. Sorry!) I am not going to bother with each and every picture.

CAUTION: There are a few NSFW (Not Safe For Work, read: slightly pornographic or containing profanity) photos in here, because this is my blog and these are my deepest thoughts, and, well, they run a bit dark and sexy. Sorry. You've been warned. There's only a sprinkling, though. Like, 8, in the midst of the, what, 100 others? And I made sure to keep it cleaner than I might otherwise, because I know there's some of you reading this who are more sensitive to that kind of thing than others (i.e. no penises, no genitalia, and no full on boobage. I gotcha. No worries ^_^).

How things are between me and Drogo right now

 

 

How (who) I (still) am inside

  

 

 

How Drogo is

How life feels right now (for the most part)

The things I yearn for and miss the most