I got my hands on an off-brand of Nutella that I can actually eat (can we please stop with the gratuitous soy usage, corporate America?), and I understand everything now. I mean everything. The meaning of life, the universe and everything. Turns out it isn't forty two, it's chocolate and hazelnuts. In spreadable form. The gods have descended and Eden is here. It's like the Ferrero Rocher chocolate candies that I've loved so much for so long but can't have anymore (thanks again to the soy problem) have exploded all over this whole grain toasted pita…slice? (what do you call a single piece of pita bread in all its pockety glory?). Of course, the whole wheat makes it healthy. Right? Right. Also, as a completely pointless side note, I must say that not indulging in the Oxford comma for the phrase, "life, the universe and everything" is killing me, but I am pretty sure that's how it's written and I want to be faithful to the original text. Douglas Adams deserves it. (For those completely lost, I'm referencing "The Hitchhiker's Guide to the Galaxy" series by Douglas Adams. It's a series of books that is completely silly, mind bending, and entirely sensible if you read them all through.)

Chewing this deluxe chocolatey treat is killer, though, thanks to the good ol' oral surgery recovery. The gaping sockets where my 3 wisdom teeth used to be are pretty much alright, in that there's no easily discernible spikes of pain above what I normally experience, but the bottom left jaw pain has got to be the incarnation of everything evil in the world. Due to the positioning of that tooth, the extraction involved cutting open the gum and sewing it shut again afterward, and this stitched area is causing me debilitating pain. Yes, even with the copious amounts of strong pain killers that I am taking, and yes, even with all of the little countermeasures you can take against pain in addition to the pain meds, it's keeping me from sleeping at night, keeping me from eating solid food, giving me migraines, making the hours pass soooo slooooooowlyyyyy, and making my supply of pain killers look suspiciously puny. Once or twice a day I give in and eat something that requires chewing, but ouch.

I finally caved yesterday and started applying ice directly to my jaw, and that was an amazing breakthrough... at first… for a bit. Now it doesn't seem to matter. Sorbet has been a helpful friend as well, kind of numbing things out with cold from the inside, plus it's super delicious! The weather, though, has been affecting the pain levels. Clouds have been coming and going and bringing rain, so on the days that the weather is changing my pain is skyrocketing. On the calm days with no clouds and no changing, I was able to get it mostly under control. Since I cannot control the weather, I will simply do what I can to get this healing up as fast as possible. It's nice to know that this intense pain will end at some point. I'm not used to thinking that way anymore.

So. Birthday coming up in a week, give or take a day. I'm going to be the ripe old age of 27. I think it's fair to say that I'm definitely not where I thought I'd be in life at the moment, and things are going to be different than I had planned, but I think I'm coming to grips with that. I feel like I'm coming to after some time in a thick, numbing sleep, coming back to myself and gulping a huge lungful of air. I've had several "off" months and lots, lots, lots of heavy blows in a row. That's had me staggering, trying to come to terms with reality; adapt, adjust, and survive. I have not lost myself, though, and I feel that irrepressible sense of self rising yet again, despite the surroundings and trappings that modify the expression.

While I was on a walk the other day I caught sight of the desert mountains in the distance, and the dark-light pattern of the clouds and sunlight passing over them in turns gripped my heart as it always does. I felt the familiar yearning for a good, solid hike, followed by a mournful thought that hiking is out of the question when I'm scraping along the road with my walker. The second thought I had was, "Fuck that noise!" I refuse to let myself be bleached barren and bled dry by my disease(s). When I go hiking or backpacking I definitely won't be able to travel as far or as fast, but that doesn't mean that I have to give it up entirely. Yes, there's something to be said for working within the parameters of reality, but there's something more to be said for not giving up on yourself and refusing to become a bland mush of a person when faced with limiting circumstances. So no, I won't be a massage therapist like I had dreamed and planned, because that's just not realistic when you consider my connective tissue disease and my fatigue and pain levels. It's not a matter of want, it's a matter of not physically capable, no matter how hard I push myself and aim for the dramatically inspiring documentary story of a life.

But I still massage my husband, my friends, when I can. When I can. I've adapted. I've altered. But I'm not giving up, not unless I want to, and for my own reasons. Because while I refuse to be conquered and give up on my hobbies and my interests because of circumstances imposed on me against my will, I also refuse to be stuck doing stuff that I no longer really want to do or that I didn't want in the first place, simply to prove that my illness "doesn't define me" or whatever. If I were doing stuff just to prove that my diseases don't have me by the balls, in that moment I'd be proving myself wrong. It's a tricky thought, and a tricky balance, and it's taken me some time to get to this place. At first I needed to simply withdraw and lick the wounds inflicted upon diagnosis, to simply ride the tide of one appointment after another, and I'm okay with that. There will be times when I do so again, and that's fine. So long as the reasons are mine, and I'm doing it for me (and not because I've been bullied into it by people or my diseases), I can do whatever I need to do to get by. For me, for now, it means letting myself emerge once more, a slightly different incarnation with all the spunk and sass of my former self combined with a new balance and perspective tempered by pain and trials.

Hey, did I mention that I got glasses? Yep, I sure did, and they make me look hot. I'll get a picture in here sometime when I can, but for now just take my word for it. Here's how great they are: I actually feel more attractive with them on than without! Yeah, I know. That's never been a thing for me before. In fact, I feel very good about my appearance in general lately. Sure, I'm still overweight and trying to slim down, but my hair has been growing out and is now a chin-length bob in my natural color, my skin is clear, I've got really cute glasses, I finally found a type of bra I can wear comfortably, thus my breasts and cleavage look fantastic (even if they *are* sports bras), and I've got some really cute earrings. I want to get more holes in my ears and I've been playing with the idea of a nose ring, a very thin and delicate hoop (see below), but I just don't think it would look that great.

I've always wanted an eyebrow piercing, however, so maybe I'll go for one of those...

I definitely want what the ponytail lady (that's Fergie, right?) has in the way of earrings-- a whole ear-full, all the way down. (I just hope my babies don't decide to reach for the shiny things, you know? Yikes!)

Of course, I want a tattoo in the worst way but since I struggle with hyperalgesia and always will, I figure that it's probably out of the question. Unless I were to use medical grade anesthesia or something for the procedure. Hmm… (Kidding.) My first tattoo, though, would be this:

To wrap things up, and on a completely unrelated side note, I love my kitties. We took Fancy, the new cat, to the vet today to check out her ears--either mites or an infection, either way real bad when we got her but improving while with us--and she behaved so well both on the car ride and during the appointment itself, even while they made use of the rectal thermometer. I know that I wouldn't be as quiet and docile as she was if a rectal thermometer was involved in my exam! Turns out that there are no mites, at least not right now. It could have started out as mites and then progressed as they left their waste behind, but she has a fungal infection that a course of ear drop medication should clear right up, and I expect that we'll see a bit of a change in her disposition once that's better. She's already sweet now, but there's a difference between being nice and sweet while you're in discomfort or pain and being sweet and nice because you're no longer in discomfort or pain. You know what I mean? Well, right now she's kind of a bitch to Bob and Juneaux (pronounced "juno", by the way), hissing and swiping when they come near or if they (try to) pass by, growling at them if she so much as sees them, but it's just driven Bob and Juneaux closer which is what I was hoping for. They're becoming bros, which didn't happen before because Bob actually had his bro, Cortes! So we'll see what happens as the kitty soap opera continues. Tune in next time for more drama on As the World Tunas/General Pawspital/All My Kitties/As the Fur/Litterbox Turns.

By the by… Which is your favorite kitty soap opera name? Got an original one? Let me know in the comments!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So 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. :)

Well, I got the call last week (I think it was?) about the blood tests that the new rheum had run. As he said, he is more than willing to look into the autoimmune side of things, though he seems to feel that my troubles are caused solely by fibromyalgia. I do not accept this. It's pretty plain that I do not accept this, and several of my other doctors agree with me. 

Good grief, I wish there were a way to get them all under one roof so they could put their heads together and share all of the opinions and knowledge about my body and its workings or lack thereof… I get so tired trying to coordinate all the appointments and rides and tests and information sharing. It's hard enough for me to just make it through the day without trying to overdose on something, anything to make the pain go away just a little bit. How am I supposed to expend all this energy trying to figure out how to get my doctors to figure out how to get me better when I'm losing energy by the week, the day, the hour? I don't have much left in me for this, and it's a bitter irony that the increasingly sick person must put forth increasingly greater amounts of effort to receive care the sicker they get. I need a caretaker, for reals. Or at least a secretary. I could wish that C took more of an interest in my health affairs… doing research, knowing my meds and what they're for and how often to take them… or even just their names? It's all left up to me and it doesn't seem fair because he's relatively healthy and I'm not and I just really don't have it in me anymore, guys. I mean, this post alone… it's taken me days to scrape together the mental energy to even type this up. I feel very alone with my sickness very often, but I don't feel that it's fair to complain or even ask more of C, because I am already such a burden. He is such a support for me, so taking care of my own medical stuff is the least I can do, right? Plus there is the whole "hanging on to the last vestiges of my independence as a human being and/or adult" thing. Did you know that, not only do I not drive unless I absolutely have to (it takes a ton of energy, it's usually painful, and I could have a twitching attack/go faint at any time and I don't feel that it's very safe for me to be driving), but it is difficult for me to get the walker in and out of my car by myself? Didn't used to be that hard. Now that I need it more than ever for getting around, it is more difficult for me to access it by myself. This seems to be an increasingly familiar theme in my life, and I absolutely hate it.

Aaaaaanyway, this wasn't supposed to be a rant about my feels regarding my sickness, it was supposed to expound upon my theory that I'm pursuing. Right, so, here's the theory.

The blood tests showed no lupus activity, which is good, but that also means that another potential answer has been crossed off the list. MS and lupus, both of which seemed good fits as explanations for my symptoms, are out. So what is making me so sick, aggravating the fibromyalgia symptoms? There's got to be something. I just keep worsening, and every time I do I'm sure there's no further rock bottom to hit… but I'm always wrong. My mother is understandably quite concerned. While I was back home visiting for Christmas ("back home", as though I've ever actually lived there LOL. But home is where the heart is, and my heart is with my family, so I guess it works.), she told me that she was afraid this was the last time she was going to see me. Not that I'm going to drop dead within the year, mind you, but my physical health has deteriorated so far that traveling is very difficult for me, even just road trips to the big city to see my doctors. It takes a heavy toll, and traveling across the country with all the planes and the sitting and the walking through terminals and… it's all just really hard. Really, really hard. So unless something changes, I probably won't be able to go out there to visit again, and she doesn't have the funds to come out here. Sucks, but that's reality.

She was very taken aback by my physical appearance as well. Several times she made the comment that I looked like a cancer patient. I was pale, weak, dark circles all around my eyes (not just underneath), my face is puffy… I just don't look healthy, despite what people and doctors say. I don't. I may "look good" in that I'm not gaunt faced and jaundiced, but I don't look healthy. I just don't look like I'm dying. On the phone with Mom last week, she told me that yes, I do look sick, and she's right. She is also worried that I have cancer. I know, I know… it sounds like we've been spending too much time with the WebMD symptom checker, right? Well, honestly… (and this is hard for me to admit) cancer is something I've been worried about too. I mean, I saw David wither away, and that was devastating. The Chemo Princess passed away just last week, but she didn't look like he did… at least, not in any of the pictures that I saw. I've had MRIs and CAT scans within the past 6 months, and none of those showed any tumors or anything, but as my symptoms keep evolving it has been concerning me more and more. Burning bones? Really? I mean, what the heck is responsible for that? Because it's not just a minor annoyance but a genuinely distressing, excruciating experience that genuinely concerns me. Stuff like that shouldn't be happening to your body. I may have fibro, but not everything that I experience can or should be chalked up to that. I believe the body will give you warning signs that you can interpret if you are paying attention, and I really believe that my body is throwing up neon signs, asking to be evaluated and considered beyond the scope of "just fibromyalgia".

So I started doing a little research, and I came across this little gem of a website explaining Cushing syndrome. I was curious about how my symptoms may be related to my adrenal insufficiency, since we've got the thyroid probs under control, and when I read about adrenal tumors and Cushing syndrome (not Cushing's Disease itself, mind you; that's something different.) I felt some puzzle pieces potentially fall into place. You see, at first it seemed silly for me to even consider Cushing's, because I have adrenal insufficiency and don't make enough cortisol (which is why I supplement, every day, for the rest of my life) and Cushing's is when there is an excess of cortisol or other adrenal hormones in the system. Doing this research, though, brought me to realize that my endocrinologist has gotten my thyroid levels good and under control but she is doing nothing to monitor my adrenal insufficiency… which could be fatal, given the right circumstances. That's not acceptable, and I mean to remedy the situation. I'm trying to get an earlier appointment than the one I have in 1.5 months so I can discuss this with her. I'm dreading the thought of possibly having to find yet another doctor in the big city, but I will if this doctor doesn't take me seriously and start keeping tabs on my adrenal levels. I'm taking the same amount of cortisol supplement that I have for years, but is that the level my body needs to be functioning optimally? I don't know. I haven't been tested. The only relevant test was where the insufficiency was confirmed.

So what makes me think that this could be part of my problem? A few of the symptoms fit what I'm struggling with: 

• Purple marks (1/2 inch or more wide), called striae, on the skin of the abdomen, thighs, and breasts
• Acne or skin infections
• Upper body obesity (above the waist) and thin arms and legs
• Round, red, full face (moon face)
• Thin skin with easy bruising
• Backache, which occurs with routine activities
• Bone pain or tenderness
• Mental changes, such as depression, anxiety, or changes in behavior
• Fatigue
• Headache
• Increased thirst and urination

Possible complications include:

• High blood pressure
• Kidney stones
• Serious infections

I've marked in red all of the symptoms that apply to me. Some are new, such as the striae, the upper body weight gain, the fullness/puffiness of my face, the increasing bone pain and tenderness, and my blood pressure that has been steadily rising over the past year.

One cause of Cushing syndrome can be a tumor on one of the adrenal glands. "Cushing syndrome is caused by constant, high levels of the steroid hormone cortisol. A tumor on one of the adrenal glands causes about 15% of all cases of Cushing syndrome. Adrenal tumors release cortisol. In adults, adrenal tumors are less likely to be the cause of high cortisol levels. Pituitary tumors (Cushing's disease) are more often seen in adults. Adrenal tumors are found in women more often than in men."

Cushing's disease is when the pituitary gland makes too much of the hormone ACTH. ACTH then signals the adrenal glands to produce cortisol. A tumor of the pituitary gland may cause this condition, tumor of the adrenal gland, or tumors elsewhere in the body that produce cortisol or ACTH (such as the pancreas, lung, and thyroid). I know I don't have Cushing's disease, because I don't make enough cortisol and the disease is too much. It's like the difference between hyperthyroidism and hypothyroidism. I'm hypo on the thyroid and the cortisol. If, however, there's a foreign something somewhere in my body that's giving me excess amounts (because remember, I'm also taking cortisol supplements on the daily), then that could possibly explain some of what I'm going through, if not all.

So, this illness… brought to you by the letter C. C for cancer, C for Cushing's, C for CFS. I intend to pursue this matter, along with a few other options such as myalgic encephalitis (CFS) or an infection of the Vagus nerve. Lyme disease might not even be too much of a stretch. We'll see. One way or another, we'll see…

I lie here in the semi-darkness; the room is lit with a weird half glow from the gibbous moon somewhere outside. The darkness is translucent and diaphanous about me, tinged with heady blues and soft blacks and the minute, luminous influence of starlight.

I am alive, vibrant, and humming despite my inevitable fatigue. My body yawns and curls in on itself; my spirit swings wildly in the breeze of my thoughts and flutters on the edge of an abyss. It reaches out with impossible hands to gather the moonlight to myself, to pluck the stars from the sky one by one and place them on my tongue to feel them melt into inexplicable froth and disappear.

The ever present question looms large in the darkness of my supposed rest: what is wrong? Another disease stricken off the list, and I suppose I ought to be grateful for each horrible fate that no longer awaits, each drooling and writhing hydra gnashing its teeth I somehow manage to escape. And yet… I find myself disappointed. Each awful reality would make so much sense, it would fit so well, and yet it all remains enigmatic and foggy… a foe that strikes at me from the mist, and I am helpless to identify it, to strike back, or indeed do more than clumsily dodge blows as best I can and try to staunch the bleeding.

It's not lupus. Well what the hell is it?! It's not multiple sclerosis. It's not this. It's not that. Do I just have the worst case of fibromyalgia in the whole freaking world?! Did I just hit the terrible luck jackpot and I have to live this way the rest of my life? Continually worsening… medications ineffective… barely scraping by financially because everything extra goes towards medical bills and the trips it takes to get me to doctors who might actually be able to do something… Maybe I should just do what a good soldier does and fall on my sword. But no… I've contemplated that so much lately, down to the minutae of planning and taking into account all the loose ends to be tied up upon my demise… and the thing that gets me every time is the mental image of C finding my body. I can't bear the look on his face or the tears. I just can't do it. So I curl up into a ball and whimper while the mist swirls and eddies around me, while the unknown, unnamed, faceless enemy (enemies??) stalks and jeers and jabs and demoralizes.

I want to get better. I want to be better so bad it hurts. (Maybe that's my problem. Hah!) I have so much potential… so much locked away inside because I don't have the energy or strength to pull it from myself and lay it out in the sun. I need an assistant, a minion, a crone… Someone to hobble hunchbackedly to and fro at my beck and call. Someone to take over the menial tasks of living so that I can focus all my precious remaining energy on creative, ennobling endeavors.

I sit here bare skinned, swathed only in quilts and blankets, and even in the dark I cannot bear the sight of myself. It is not that my form is displeasing, per se… but it's because I can see what is inside me and it kills me that I can't be everything that I want to be. On the inside, I am wind chimes and church bells and Tibetan prayer bowls and bagpipes and a hand drum. I am brightly colored beads flashing in the sun, multi-hued fish swishing secretly through cool ponds and rivers, and the whisper of leaves as the weather changes. I am the smell of rain on the way, the eye boggling pleasure of a riotous tie dye pattern, the satin caress of age-smoothed wood, and the soul satisfying release of the perfect cup of tea or coffee. I am so many bright, beautiful, eclectic, warm and neutral, shining, earthy, wildfire things inside… and I can't get them out. I can't be who I really am and who I really could and should be because of this poor broken body that I can't help but hate sometimes. Most of the time I regard it with a fond kind of pity as you would with an injured kitten, maybe with a bad leg. Other times, though, the frustration boils up in me like a scalding magma that feels so good to indulge yet at the same time fills me with a deep and ineffable despair and sadness… because I am not sure that this body, this prison, will ever change. Kitten's legs can heal. My beautiful soul-skeleton is closed in by swaths of pale, chubby flesh shot through with purple stretch marks that were never there before. Sometimes they are beautiful tattoos that tell the story of my Amazonian endurance, and other times they are the ragged cracks through which despair and disgust ooze from my very core as lava from the earth's crust.

So I lie here in the half-moonlight, and I wait. I wait for sleep to overcome me, as inevitably it will. I wait for tomorrow to begin. I wait… I just… wait.

So today we plan to go visit the local ren faire. I'm inordinately excited, as I always am when it comes to renaissance-themed events. I plan to wear my green dress (the one I initially bought to get married in), and, joy of joys, I can get away wearing it without supportive undergarments! Freeeeeedom.

My friend K devised an ingenious sling of nylon webbing, carabiners, and something that looks like a wire baking rack. It loops over the handlebars of my walker so that I can rest my feet up off the ground and be pushed on the Chariot. It's a foregone conclusion that I am not up to walking around a dusty fairground for hours. I woke up with pretty severe back pain, especially low back pain, so even getting to the kitchen from the couch is a bit of a challenge for me today. I saved pain killers especially for today, though. I will not miss out on more things, just because I'm sick! I'm already having to miss K's wedding, although that's really more of a financial thing than anything else… I missed being able to spend a week with J and had to content myself with just a few hours. I had to give up my job completely this past week (which my heart is still crying about)… no. I draw the line at ren faires. As long as I have someone willing to push me, I will force myself to stay upright and conscious long enough to at least make a pass through. I do have to make a point to take pictures of the ingeniously designed sling, though. Many people have asked for them.

Despite the high pain levels, I am feeling a bit cheery today, probably because I'm expectant about my adventure. I need to shower, but I'm feeling so buoyant that I may decide to do my makeup as well! I've compiled some really neat eyeshadow tutorials on Pinterest, and I've been dying to try one of them out. So far, though, I've not had the energy or the occasion. Seeing as how C recently laid himself down to sleep and won't be up again until 1 pm, I've got hours, so I can take my time and just do a little bit at a time. Once the sun comes up, I will bring my makeup out into the living room and set myself up a little makeup studio. Maybe I'll put on one of my favorite animated movies while I do that. I'd like to re-do my toenails, too, but that is not going to happen today. Too much back and ribcage pain for me to be bent at the waist for more than a few seconds. Besides, sparkly nail polish doesn't ever look abominable, even when it's chipped. Plus I'll be wearing boots.

Oh! Oh! My friend L, who moved to the East coast, is in town this week! She showed up the other night and surprised me :) It was really nice. I was feeling pretty awful (that was after I'd been throwing up, but was recovering), but she already knew the status of my health so there was no pressure. We hung out on the couch together, watched Pirates of the Caribbean, and chatted up a storm. Heyyyy… maybe she'll come back over and do my toenails for me? I'll be seeing her at the faire today, as well.

So far my tactic of drugging myself senseless with sleep aides and Benadryl has worked. I've slept a lot, and it has helped me to stretch out my remaining pain pills further than I ever anticipated. I'm really proud of myself for making it this far. It's been miserable, to be sure, but I'm still here, and I made it work. Now, to just make it to Monday morning… God, I hope they give me a script. I've been keeping track of my pain, (the new blog, remember?), I keep track of when I take my pills, and I've got the timeline of my symptoms and pain, so it's pretty clear that I'm legit. Not to mention the fact that M will be with me and I won't be alone, so I have someone who's seen my sickness firsthand and has taken care of me. She can add valuable perspective, and help me to advocate for myself. I couldn't find anyone else to take me up there on Monday, though I asked around, so she will be skipping out early on the last bits of the ren faire (she's staff there) and driving me up at butt-thirty in the morning. We'll be leaving by 3:30, I believe the plan is.

Have I mentioned that I'm terrified? I'm so scared that they will refuse to help me… or worse yet, want to help me but be unable to. I'm scared that I'll be labeled as a drug-seeker, as a faker, that I won't be taken seriously, and that I will be condemned to try to live with this pain as best I'm able. This is, essentially, my last hope at this point. These are the people who can help make my life livable and bearable. Whether or not I am able to control my pain dictates whether or not I'll be able to participate in life again, to hold down a job, to drive myself places, to have fun adventures, to have sex with my husband, to keep my home in order, to exercise and help my body to be as healthy as it can… It all kind of hinges on what goes down this Monday. And that, my friends, is terrifying.