Something dark and hard but also viscous is rolling around inside me today. It started last night, on my walk. I started feeling dark and panicked and choked with grief and just… small and tender and tense. I keep bumping up against the hard edges of this thing no matter how I try to tiptoe around it. Depression? Anxiety? A combination of both? Could be PMS. Whatever it is, it makes me feel tacky and slightly soiled, completely exhausted, and way, way more pissed off than I am on a regular basis.

I'm angry, deeply angry, that I can't just get up and clean my house like I used to. Sure, it was hard back in the day (and now I know why), but it was doable. Now there are a hudred isolated little messes that I can't bring myself to corral. I'm too busy trying to drag my carcass through the day, make sure I take my meds, make sure I eat something, drink something, try not to vomit, futilely fight to stay awake… I'm weak as a kitten, and with less stamina. I hate being trapped in this body. Maybe that's it. Maybe that's the darkness I've run up against--I'm just finally fed up (again) with being trapped and shackled.

Yes, it happens to even the most cheerful and optimistic of us, "us" being those with otherwise invisible chronic illnesses. I don't have a remission to look forward to, just a further "managing" of symptoms that grow ever stronger and more varied as the months pass. I have to wonder, is this future I'm facing even worth all the effort I'm putting into it?

Perhaps I'm just over-exhausted. It was a busy, active weekend, as far as my energy levels are concerned. We spent hours in stores, looking at various things that we are shopping for, testing different mattresses and computer chairs… So exhausting, but also quite fun, because I was with Corey. But maybe my melancholy is simply a result of over-exerting myself during Corey's days off? That could very well be.

I spent some money yesterday, too, more than I usually do. I bought new components for a medic alert bracelet, a few other things… and I started feeling absolutely terrible and panicked later, sure that I'm a terrible person now because I bought frivolous things and I could have used the money to pay off medical bills… even though I took the thousand dollars I got from my late sister in law's life insurance and spent it exclusively on medical bills, and it seems that's all I spend money on these days… Like I'm no longer qualified to be a responsible adult who is good with money because I veered from absolutely necessary living-only expenses. Isn't that silly? I didn't use money appropriated for something else, and I can definitely make up for it in the next year. I guess I just don't feel like I could or should possibly… whatever. I don't even want to think about it anymore.

Whatever it is, I feel physically shitty (surprise surprise), I feel emotionally shitty, and I miss Bob with a fierce ache that won't be silenced. I contemplate getting up, doing the dishes, tidying the coffee table, even making an apple pie… and then I simply roll over and ignore my misguided ambitions. Perhaps later I'll dose up good with my meds, turn some energetic music on as loud as I can stand, and do the dishes and make that pie. Maybe a multi-berry apple pie? I dunno. I've been craving soda lately, too, mostly Coke. Gotta figure out how to get some of that here to the house, since I can't drive and I've got no vehicle… I wonder if I could simply order a 2 liter from a pizza place and get them to deliver just that to me? Hmmm… I'll have to make sure to hydrate alongside drinking soda, of course.

I'm sure my foul and exhausted mood will pass. I've got some exciting news that I'll write about then.

Note: I went and took a look at my "Quotes to keep me goin'" section, and it helped a remarkable lot. There's a reason I keep that page around… lol

I have been asked quite frequently this month if I'm happy about my new diagnoses, happy to know more of what's going on? That's a hard question to answer, truly, but the answer I give is kind of a yes-ish yeah sure when I'm asked. I mean, yeah, but…

The news I got is not pretty or happy or pleasant, not by any stretch of the imagination. The hypermobility, there is no treatment or cure other than palliative care, meaning that my excruciating, unmitigated pain will continue without cease or relief, most likely for the rest of my life. Not only that, but it comes with joint slippage and dislocations. Definitely debilitating. Then you have the connective tissue disease and the arthritis, both of which include pain of their own but can be treated. However, there is a distinct possibility of degeneration in time, especially with the arthritis, which is debilitating as well even if the pain is alleviated. It would be nice to have some of the pain taken care of and taken away, even if not all can be. All that, on top of the Hashimoto's and Addison's that must be closely managed if I'm to live normally or stay alive at all, the food allergies and IBS that can make my life a living hell in the blink of an eye and last for weeks at a time,  depression that sucks me into the deepest, darkest pits of blackness without warning or mercy, asthma that prevents me from hard exercise lest I suffocate on my own carbon dioxide, colitis and internal hemorrhoids that leave me doubled with agony and passing blood and bloody mucus… and by the way, do you know how scary it is to use the restroom and see great amounts of blood among your excretions?! Yeah. Bleeding internally is kinda terrifying, no matter how close to the exit it is. And among all that I still have the original fibromyalgia, which is a roller coaster ride of bullshit all on its own. (One of the theories I've read recently about the rise of the chronic illness population is that with the medical advances we have, the weak that would have died off in past times are now surviving to adulthood and bringing their illnesses with them. Looking at the list above, I really think that I would have died off, no? I mean, I barely survived birth.)

So the answer to that oft-asked question would have to be "no". No, I am not happy about these new diseases. Relieved? Yes. Vindicated? Totally. But happy? No. No, I am not fucking happy. I am oddly proud that I was right all this time, though. At the same time, I'm done. I'm so, so, so done. I've had a fever for the past I've lost count days, with the chills and exhaustion that comes with. It's been the best I can do to get most of my dishes into the kitchen sink, but forget about washing them. I've had a minuscule to zero amount of motivation for anything in what seems like forever, and I'm so sick of it! I could go on and on with the complaints, but I'm tired of things being wrong and they just are and it doesn't matter if I write about them or not. I fear I am defeated at last… though I know in my heart that it is only temporary. I will rally and return to myself, someday… but for now, I'm wiped out. I haven't the heart to muster anything but naps.

I'm considering going to my grandparent's for a few days to rest, to let them take care of me a little. I yearn for a caretaker often and heartily, someone to lighten my load a bit. It's hard enough being so damn sick, but trying to fight through the medical system and do my truncated version of daily life at the same time is one plate too many to spin it seems. Who doesn't want their mommy to smooth their hair and make them soup when they're sick? If I had a dedicated caretaker, I wouldn't' have to worry about rides so much either. I hate searching for rides when I have an appointment. It's so difficult, and I generally feel like I'm taking advantage of the goodwill of my friends. I'm worried that I'll wear out my welcome one of these days. I had a thought, though, while I finally began to do some research into the lighter aspects of arthritis (I've put off any research or dealings with any of the new diagnoses until now. I just kinda don't wanna know yet. Don't wanna deal with it. Bleh.), that maybe I'll be able to find a support group here in the area. Friends online are a lifeline to be sure, but in the flesh support is another thing entirely. It would be especially nice to find a couple of folk in my age range as well, but I think that's pushing my luck for Yuma.

So, back to being all blah and curling up with my fever and sweatpants and electric blanket and tea and movie. I've been watching both of the 300 movies tonight in keeping with my rather black mood. The blood and gore used to bother me terribly, but I've learned when to look away. Also, Corey's dark humor has rubbed off on me a bit and I find some things amusing that I didn't used to. I learn so much watching war movies with that man. I swear he's an encyclopedia of battle tactics, armor and weapons throughout the millennia. It's amazing, really. Can't wait until he is teaching all that interesting stuff to our kids.

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

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

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

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

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

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

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

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

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