Warning: this will be a rant. It will contain negative things, even though good things happen and work out in my life too, because that's what I need to clackity-clack right out of my head and lightly boiling veins right now.


I just spent the day in the company of a woman who reminded me at least once an hour of the many mistakes that I made yesterday while operating under crazy stress, tons of pain and flaring, and 3 hours of sleep in 2 days. And she just couldn't let it rest and how upset it made her and all that jazz. I got REALLY sick of hearing my faults reiterated, especially when I'm already stressed and overwhelmed to the max and barely operating in "human" mode through the stress, crazy severe depression, and fun fun symptoms. So of course I overdid it carrying my own stuff and such, because I was already "below" her and I couldn't let her feel anymore, well, entitled because I really couldn't bear it.

She's not a bad or evil person. We had some good times, laughed a lot through the convos. But no matter how much I explained my intentions within the mistakes that I didn't know I was making and apologized with full owning of my own responsibility, she just could. not. stop. bringing it up. For instance, when I explained that I was late to pick her up this morning with Grampa (yes, and never texted ahead to tell her), I explained that it was because I was throwing up when Grampa got there and had to kinda stop first, and also I have only been out of the house lately at 2 a.m. so I forgot to factor in work/school morning traffic. Her reply was to ask why I didn't text her while I was vomiting? Yeah. Sigh. But, hey, we did have some fun here and there, cause she's a decent person and funny, so it wasn't a misery every second, but I felt very trapped and under a microscope. I know she's in a stressed condition herself, so I'm seriously hoping that all of…that… is just another misunderstanding brought on by stress and the awkwardness of not really knowing one another. The ways that we interpret things seem to be at complete odds to each other. It was just… I dunno. It was just a lot of conversation that made me feel like a shitbag for being, well, me. Like everything that is just intrinsically me and me living life is a pet peeve of hers to some degree or another.

I am overly sensitive right now, I know, but I really don't want to spend time with her in the future under my own volition. I don't want her in my home because it's my sanctuary, the one place where I can fuck up but cuddle my kitties and know that I'm still a person that other people like, or to just fall apart and slowly put myself back together bit by bit. If that gets tainted because she misunderstands something I say and starts giving me shit or gets mad or something, I feel like I'll be losing something important. However, her husband is the one that I have been building a friendship with, not her, though I'm not even sure how or if I'll be able to handle him for a while, and he and Corey have already bonded as nerd bros, playing Magic and talking about DnD campaigns and running Diablo dungeons together, etc, and I absolutely do not want to ruin a budding friendship of Corey's. Too many of his friends have moved away, and our social circle has become practically nonexistent. It is the tatters of the tatters of the original, and it is sad because he works such odd hours that he can't just go out and go to… something… and he doesn't like sports, and other stuff. He prefers his friends be close to his level of intelligence, so that cuts out a huge portion of the population right there, lol. Anyway, yes, the guys are building a friendship, and the guy and I are building a friendship, but I don't know how much I am expected to like or interact with the wife in the future of said friendship. However, they have a style of communication that seems to be similar to what Corey and I have, so they share anecdotes of the conversations they had throughout the day, including texts and such, so it's not like I can even tell him any of this without having the whole thing blow up in my face like it did this time and who knows what the hell will happen then. Only the next time I'd be expecting the explosion, so I might be able to duck. I'm tired just thinking about it. I couldn't wait to get home. So much for the claim of hating drama, cause this shit has been pretty dramatic in some ways.

I'll give you a tip for life and interacting with people: if somebody fucks up, even if it seems like a major deal to you, accept their goddamn apology like a decent human being. If they are sincere, that is. And I was. And… yeah. Never heard an acceptance of that apology, assurance that we were cool… just an endless recounting of her offended sensibilities. I went back and read my texts and hers and I can see her side of things now that I know what to look for, but I can also see that I didn't mean any of what she interpreted, so… it was basically a horrible day, because she was my ride to LA and back for the pain doc appointment. That went okay, not an abysmal tragedy like last month where I was running from pharmacy to pharmacy to find one that had the stock to fill my prescriptions because the DEA/wholesalers are mucking up the system thanks to the "war on drugs" that's ruining my ability to have a semblance of a functioning life.

//break for rant regarding current difficulties with "the system"//

I am very lucky I didn't end up in the hospital this month, being forced to quit a serious and strong dosage of a formidable type of pain medication cold turkey, as I couldn't find a pharmacy that had the ability (or willingness, *ahem*) to fill even part of my script. Do you know how freaking dangerous that is? And with the Intractable Pain that could already severely damage body systems when let run unchecked as "the system" is forcing me to let it remain unchecked? What happened last month could literally have killed me, or turned me into a total cripple. It's terrifying, having cold impersonal forces playing with your life and livelihood and having such a limited ability to impact the outcome or the process itself. Fucking terrifying. Especially when you're talking not only livelihood, as in the ability to dress yourself and shovel food and liquid into your mouth and deal with the digested products, or even the ability to sleep in a normal manner, but when you are talking about your literal life. And mine is not even 3 decades old. If something terrible happens to me now, I will have to deal with that for, well, the rest of it, and I really, really have enough to deal with already.

//end rant//

Today's experience remanded me that I've been feeling very strongly lately like people just don't understand what kind of pain I'm in or that it's bad enough to make me really sick, like, all the time, and it's really easy to brush off exactly how hard every little thing is for me.  That could probably be because I am smiling and laughing and chatting with the person, walking around as much as I can handle at the time, etc, because I hate being a burden and being beholden to people, and I really want to keep as much independence and dignity as I can. But life is hard for me and getting harder by the month, so let me rectify that bit of ignorance with a brief explanation that may lend itself to a better understanding. It's difficult to truly comprehend unless you have experienced it, though a good effort might get you close, intellectually.

So. Imagine that you've gotten into an accident of some kind, perhaps a vehicle on vehicle crash or being hit by a truck while you were moving in front of it as a walking pedestrian or a bicyclist or maybe on a motorcycle. You get hit by this other vehicle and you are slammed around all over the place cause you flip over at least once and make sure that all sides of you are evenly "tenderized", hehe, before you come to a crushing halt due to reacquainting yourself with the Lady Gravity, who is a cruel mistress when shunned even briefly. Immediately, you begin to feel the effects of this reaquaintaince, especially if your imagined accident included you being actively run over by the vehicle that hit you, which would be a nice and accurate touch. As you groggily try to sit up, you notice and begin to catalogue the various pains and injuries you've just acquired, though not through any fault of your own. It was totally out of the blue and not your fault, but you're sprawled on the ground regardless, so you try to be productive and figure out what still works while you wait for the ambulance.

Skip forward to, oh, say, the hospital. You have realized the extent of your injuries, and the full understanding of what life is going to be like until you heal up is beginning to wash over you in confused, concussed waves. You can't quite think straight, and you're getting words a little mixed up, dropping some completely, and using Spoonerisms for the first time. Your head aches with every throb of your pulse, any noise or vibration that comes from your pipes, every slight toss of the head. In fact, even scratching your eyebrow leaves you wincing and exhausted, but you've just noticed something else: everything hurts. It isn't a collection of various pains that kind of wait in the background until attention is turned to them to speak up, no no. Nothing so shy and considerate. These are all large, strident pains made of many different flavors and modes of operation. The pulled and strained and bruised muscles are a fierce, tight ache that clenches in on itself  the longer it continues, underscored by a constant, full body throbbing ache. You feel like a giant bruise, and when you move the injured muscles they seem to complain with the stiffness already settling into the joints and tendons, sending sharp, unpleasant stabs of pain through the abused tissues.

You find that all of your bones are broken. All of the major bones that hold you up and keep stuff in are cracked like so many sturdy twigs. No bones sticking out anywhere, but definitely all at least cracked enough to compromise their integrity. Not only are your muscles constantly complaining at you, but now your skeleton cannot and will not hold you up as it was intended to do as its integrity has been compromised. Your muscles have to kick in overtime and extra strength to make up the lack, but that only causes them to tire faster and begin to cramp and rebel that much sooner, and they were already bruised and throbbing and not happy before the added work. Since all of your major bones are broken, you will now have to rethink every single aspect of your daily routine. Your hands and fingers hurt too much and are too weak to support your pen to sign your name, or grasp your toothbrush, and there is no way that you can shower with any regularity or without some kind of assistance. Using the remote to navigate through Netflix is okay for one or two clicks, but just holding the remote in the air can only be done for a couple of seconds, if you can manage it.

Your legs just don't hold you up so well right now, what's more they hurt like crazy all the time, from the inside of the bone itself all the way out to the skin, and you need help getting up, getting down into chairs, standing if there is no wheelchair/walker nearby, getting in and out of vehicles, getting into and out of bed, putting on pants (because legs and hands are broken, so of limited use), and putting on shoes is so far beyond you that it's not even funny. You can't wear a bra of any kind because of your poor tortured ribs, and in fact you can't wear most or any of the clothes that are typical of your wardrobe because they bind in places too much and cause untold agony with their rough fabrics and their awkward fasteners and cutting into tender skin and the sheer volume of energy it would take to don and doff those duds.

You also can't sit or lie in certain positions or for very long, and you have pillows everywhere to cushion your delicate, pained self. There's not much to do because you're limited to lying or reclining, because when you get up from the prone position everything goes black briefly and a very loud rushing, roaring sounds fills your ears and drowns out everything else for the next minute and a half, at least, though it gradually fades. You could watch a movie, or maybe read a book, but good luck paying much attention to it, the way you feel and the nausea that's sloshing around in your mostly empty belly. You can't stand up to cook, either, so it's whatever you can throw together in the time that you're upright-- if you haven't passed out on the floor or something by then--before you somehow drag your poor carcass back to whatever piece of furniture you've claimed as your kingdom and throne. (Shoot, it could be the actual "throne", whatever works for you.) You're not really hungry, though you probably should eat so you can take your meds on time in a bit, but your pain levels are rising rapidly and you can feel them going through the figurative roof. You use the bit of pain management that you've been taught and it seems to work okay for a microt or three, but then the pain distracts you again before you make much headway. You really, really, really need another dose, but it's not time yet and you don't want to be accused of being a druggie, or addicted, or run out early and be flagged as addicted and not be able to access the medication you need in the future, so you wait. You wait till the proper time and write it down where you're keeping track so you don't mess up the schedule that will make your meds last until the next fill.

Now, though, the pain is raging and it is way too intense to be stopped by that silly medication, so you suffer in this horrible cycle of "I have to wait, but I'd like to take another pill NOW" and "While I was waiting my pain went up 3 scale points, and I need to go to the emergency room now because I can't handle this here at home", but the ER doesn't want to see you either, so you… cope? Somehow. Urgent Care, perhaps? While you are weighing your options through your frustrated, angry tears you realize that you're pouring sweat while shivering lightly, and you realize that you have yet another fever for no real reason. Shaking your head very, very carefully and very minimally, you turn and crawl home (figuratively) to lick your wounds in the privacy of the walls you call home.


All that I wrote about the experience of doing life after the injuries is "a day in the life" of a young woman with very, very severe Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome, among several other goodies. Well, I can use my hands better than I wrote about for now, so I can brush my own hair, put my clothes on most of the time, brush my teeth, use a pen, type (obviously), but shoes are still very difficult for me. It hurts too much. Muscles, bones, joints, skin… all of it.

So there, people without severe pain diseases. THIS is what I'm experiencing when you come over to watch a movie, when you are giving me a ride to the doctor or the store, when I'm surfing Facebook and participating in a Poke War, when I volunteer to help you do anything… always. It feels like this *always* for me, and that's just my "new normal". I hate it, and I miss being more independent, and I feel like I'm about to lose my freaking mind sometimes when I'm flaring for whatever reason and my personal pain scale has to stretch to accommodate new numbers, or when yet another medical bill appears in the mailbox. I hate the fact that it never, ever goes away or lowers to an ignorable level. It's always there, always distracting me, always chewing at my brain and body, but it does carry with it a measure of pride, feeling like a Spartan among commoners for the commitment it takes to still be civil to people when you feel so shitty, to still TRY when every day is the same, a variation on a theme, and you pretty much know how it'll turn out but you fuckin' try anyway because you can't quit. It's kind of not an option when you're trying to life.

So with that in mind, I'll just try to be civil to the lady who hurt me so badly today, and see what comes of it. I'm too tired from trying to life to do anything else. I have been operating at max capacity for stress and obligations for weeks now. Priorities. And she just… isn't one. I'm not sure about the husband right now, either. They are a team, and I don't want to break the set if I don't have to, in terms of friendship. Does that make any sense? It's going to have to, because I'm going to bed now, cause UGH. What a long day. I feel better after vomiting my angry words into cyberspace, though. Blogging has always been such a good processing tool for me.

If you want to learn more about Intractable Pain, here's a good, brief little primer, and here is a quote from it:
"Based on our clinical observations, within the chronic pain population, a subgroup has an intractable pain syndrome or disease. All have incurable, extremely painful conditions, as evidenced by failure of various interventions to control their pain, including surgery, nerve blocks, physical rehabilitation, and weak opioids. Patients describe their pain as constant, debilitating, and potent enough to interfere with sleep and sexual function. Many report suicidal thoughts for the sole purpose of stopping the pain, incessant crying spells, fatigue, depression, social isolation, restriction of mobility, and numerous bed- or couch-bound days."

There's a website called bdsmtest.org where you can go to take a detailed questionnaire and receive results that tell you what percentage of different kind of kinks and fetishes you are. I've taken the test a few times, because I like to keep coming back to it as I explore more and learn more about what I like. This time around, my results came back thusly:

== Results from http://bdsmtest.org/ == 
100% Experimentalist 
98% Bondage receiver 
95% Submissive 
95% Exhibitionist 
94% Degradation receiver 
89% Masochist 
86% Brat 
73% Voyeur 
71% Primal (Prey) 
70% girl/boy 
67% Slave 
67% Non-monogamist 
52% Bondage giver 
51% Ageplayer 
44% Pet 
39% Switch 
35% Master/Mistress 
34% Sadist 
30% Owner 
29% Primal (Hunter) 
27% Vanilla 
21% Brat tamer 
19% Dominant 
14% Degradation giver 
11% Daddy/Mommy 
11% All-Rounder 
See my results online at http://bdsmtest.org/result.php?id=517711

Apparently my number 1 trait is that I like to try everything out. Nice! I'd say the results are pretty well accurate. As you get down past 50%, though, I'm really not into most of that stuff at all. Then again, I haven't really tried much of it first-hand, so I may like it a lot a lot. Never can tell until you try it.

That's all I wanted to share. There's another fun thing I found somewhere, which is a "map" of the different types of kinks and fetishes with color coded pins that you can stick on there to indicate if you've tried a certain thing, want to try, never will try ever, etc. It's really fun. I'll have to poke around and find it again and put the link in here with the bdsmtest. Happy flogging, all!
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
Took little Bobbers in to get that respiratory infection he couldn't kick taken care of. The vet was curious and suspicious as to why a normally healthy cat couldn't kick a regular infection, so he ran a test, and sure enough… Bob had contracted feline leukemia. Corey and I made the decision to put him down then and there, mostly because any money we can spare goes to treating my diseases, and he was just gonna be sick and miserable until he died. That's not fair to him. So, as much as it sucked, they euthanized him right then, with me holding him in my arms.

It was awful. Not because it wasn't quick and humane, but because I lost another child within 4 1/2 months. Bob's brother and litter-mate, Cortes, died on February 6th, and Bob wandered the house and property for weeks, crying for his brother, his favorite playmate and closest friend. That made it really hard for me to deal with Cortes's death, not to mention the incredible suddenness of it. He was fine that morning, he ate the antifreeze, two hours later he had been euthanized and was dead. Same with Bob. I had this horrible premonition when we took him in, but I kept trying to shake it off and chalk it up to worry, you know? But I knew there was something seriously wrong. I just knew. I know my cats. He cuddled up to me the night before, but I regret having been out of town all day and spending our last day together away from him. We had one last night together, though. Then the appointment, and within half an hour… boom. That was it. It was devastating.

Fortunately, Corey had the day off and was with me, so after I relinquished Bob's tiny, limp body he took me home and watched an episode of Cosmos with me while I ate cake I had bought the day before from my favorite bakery. I felt some better afterward, but my grief has stayed with me, and at that time worry was also gnawing at the edge of my consciousness as well, because we had to take the other two cats to be tested for feline leukemia, which apparently transmits incredibly easily via saliva. Bob and the other cats weren't very close, so there was little to no grooming going on, but all of the cats do share the same food and water dishes, which could totally pass the disease on to the others. I was going crazy with worry and fear and grief, making sure that I spent time with each of my kitties… in case it was the last time. I was really worried that Juneaux would be sick and I would lose him, because we've been together for so long, and been through so much… he's been the thing that has kept me alive/kept me from attempting suicide several times, and he is the thing that kept me going during my deepest and most miserable times of depression while beginning and trying to deal with the abuse and PTSD in Idaho. He is as near and dear to my heart as my family, and it would destroy me to lose him before he dies of old age.

Corey reminded me that I'm going to lose Juneaux someday anyway, but I told him that there is a huge difference between losing him to old age and losing him to tragedy. It's the same for people. It always tears you apart, but it's just… different.

Took the cats in late yesterday morning, and all of the employees and doctors were very kind and respectful, since they knew I had lost Bob just two days ago. Our regular vet was in that day, so she came back in after testing the two cats and asked me if I wanted the good news, or… the good news? I wasn't sure I heard her right the first time, so I was kind of silly and stunned, asking the same question a few times, but yes-- both Juneaux and Fancy have a clean bill of health. I made sure to get them both vaccinated against feline leukemia right then and there, though we still don't have enough money to cover the other vaccinations. I think they'll be okay. The vet said that one thing that worked in their favor is that they are adults, so their immune system is fully developed and stronger than Bob's was. Also, they don't get into fights regularly like Bob did, so less chance of catching it from other cats. I think that applies to rabies and distemper, as well.

I'm feeling better, emotionally, after having that relief of good news, though I am still grieving hard over Bob. Not constantly… and it's a little easier this time because there are no other kitties wandering around looking for him and crying, and also, Bob used to be out and about for large portions of the day, evening, and sometimes night, so it really just feels like he's out somewhere and he'll come back later. He wasn't constantly underfoot, so I'm not constantly reminded. That helps. I don't know if it'll be counterproductive in the long term to healing, but it feels better right now, and that's kind of all that I care about.

Went to a farewell party for two friends who are moving across the country (stop moving away, mofos!), and it was nice. I enjoyed myself, though for a while it seemed like everyone was just kind of wandering around more or less bored… but V, one of the other women, she insisted that everyone start playing these games that she brought, and that totally made the tone of the party so much better. I fell asleep during the second game, which is kinda surprising because it was super loud and lively, but when I need a nap my body will just go for it, and I had been putting it off all afternoon because I'd been out and about and busy. The man of the moving couple didn't quite seem like himself, which was weird, but then I've never been around him when he's drunk more than one or two beers, so that could be it. It could also just be the stress and grief of moving, especially moving away from such good friends and such a tight community such as we have now. I hope they can find the same happiness where they go. I had a bag of gifts for them, and he texted me later and said that it was a very touching gift, and thank you immensely. That made my heart smile, even if it is heavy that they're leaving. I care about them a great deal, and they have made it clear that they really like Corey and I, so it really sucks that they're moving. It is hard to find a couple our age to hang out with that aren't ghetto assholes or druggies, or with an obviously unhealthy relationship dynamic, and that's just way more drama than we want to expose ourselves to. The moving couple had so many of the same interests, and they have a zero-drama-tolerance philosophy, like us.

So I'm grieving two things. Three, if you count the memory of Cortes's death that's now super fresh and in my face again. I ate some italian food that I probably shouldn't have on Friday when we went out to eat (I begged for Italian over sushi, and now I'm paying for it lol), and now my guts are in a huge uproar. Probably because I ate the leftovers last night when I returned. My intestines sound like water gurgling down a drain pipe. It's definitely a weird sensation. I just wish I could get off of the damn toilet! That's where I'm living today, apparently. I know that my sadness is a large amount of my gut problems. I always have gut problems when I'm stressed out by anything… and losing what to me was legitimately a child, albeit furry... I consider the cats to be like furry human toddlers. That's about the age and communication level we're at together. Also, being unable to carry or bear children of my own… they are truly my surrogate babies. And I've raised most of them from infancy, if not birth. Bob and Cortes were both babies I raised from birth, and Juneaux was only a few months old when I found him. I feel that I have a right to grieve as much as any mother grieves over her lost human child. So, that being said… I know why my guts are all jacked up. Death, loss, stress, grief, loss…. so much loss… I'm just so glad that Corey understands my grieving process and is there to back me up and comfort me when I need it. Love that man.
This, by the way, is what I'm currently listening to… It's so soothing and peaceful, I feel like I need to share it for those of you who haven't heard it before. It's one of my favorites to have on repeat--the whole record is, in fact.

I hope this soothes your soul as it does mine.
I've spent the last hour or so putting together (and editing the track info on every track for accuracy) a playlist for travel. I dislike radio stations because you have no control over what they play--and all three of the stations in Yuma suck--and they inevitably cut out into annoying static somewhere throughout the journey. When traveling with Corey, he always has his phone or usb with tons of good music, but he is rarely my driver because of work. My plan is to burn several cd's, however many it takes to fit this playlist on, and keep them in my little GPS bag so that I will have them whenever I am traveling, because I always take my GPS with me on out of town trips, even if it's the same destination that I've been to every month for the past year. Just in case. Detours, and all that. Plus it finds restaurants and other stuff! Best Christmas present ever. Seriously. It's been so practical and useful! And I don't have to finagle trying to borrow my grandparent's GPS any longer.

Putting together the playlist has me listening to songs that I haven't listened to in the better part of a year, thanks to my discovery of Pandora and Youtube playlists. I haven't relied on my iTunes library in quite some time, but it was nice to discover favorite songs again. The interesting thing is that I started going through my old Christian Rock/Praise collection again, and I felt things… it was just very interesting.

Listening to my old Alternative Christian Rock brought back all the warm fuzzies from my time in Idaho, which is when I began listening to it and collecting various tracks and artists. It's kinda weird to feel the rushing tingle of whatever it is I'm feeling, but I just feel wrapped up in a warm hug, almost, when I hear certain songs. I think a lot of the powerful effect they have on me is that they are heavily associated with a lot of the work I was doing to confront my abuse and to break free of my crippling depression, so I feel that same jolt of self-affirmation and power that comes with really trying to better myself and my circumstances. That whole time period of 2 or 3 years, however long it was… it was difficult beyond all reason at times (a lot of times), but I also made more breakthroughs and developed myself personally more than I ever had before in my life. I really think it was the time I spent in Idaho and the summer in LA that gave me the backbone and strength I needed to face life with multiple degenerative chronic illnesses. I learned my own strength and intelligence, my charisma and ability to love and be loved. It was necessary preparation for not just the next phase of my life, which included college and my work with The Healing Journey and getting married, but for the rest of my life. My time at Bible college, SOULS West, was more of a test of my stubborn resilience, and without SOULS I never would have gone to Idaho like I did. I got a job offer from the Conference up there as a Bible worker (which I thoroughly hated, as much as I hated canvassing, but I can't deny the skills I honed through both of those occupations), and thus I was connected to the Adventist community where I lived in a way that I could not and would not have achieved any other way.

While I no longer hold to the beliefs that I struggled to adhere to in those days, I still get that rush of pleasant feelings when I hear the music of those days. When I first felt it, I questioned a little whether it was perhaps dormant beliefs rearing their heads? But no. When I listened to the lyrics, though, I thought that, yeah, it must be nice to believe in your ultimate importance in the grand scheme of things, to believe that there is more to life than meets the eye… and I believe that there is, but not in the Christian scope of things. Not anymore. Maybe if I hadn't gotten bold enough to start examining the questions and thoughts that I'd always buried before, lost in the flurry of religious activity and constant motion, then I'd still be a member of the church in some way or another, even though I probably wouldn't make it to church super often these days. I admit to missing the camaraderie of a unified culture, the instant connection with other Adventists due to common belief. How could I not? It gets lonely here, with only cats for company. Yet I don't have the energy or will-power to overcome the pain and seek out other company, so maybe it's for the best. Talking to people is really exhausting.

I saw the geneticist at the end of last month, and my rheumatologist earlier this week. At the advice of the geneticist, I quit taking Vitamin C supplements because I didn't see any difference or help from them. She said to note carefully if I did feel any different upon quitting, and to start up again if I noticed a benefit to me. Well… they were doing more than I realized. A few days to a week after leaving off the C, my pain levels skyrocketed to what they had been back in the bad old days, before I had found proper help for my pain. Even with the strong medication I'd been given, I have been in agony for the past week. It's been awful, so awful. It's not just pain, it's a painful burning within the bones and concentrated in the joints, like they are filled with napalm and brimming over into my muscles… I've had to use my walker to creep around the house this whole week. Thankfully, my fatigue has increased with the pain so that I am sleeping just as much as before, if not more, which means that I am insensible to the pain consciously, though I definitely still feel it. I know, because sometimes I wake myself up with moans that sound remarkably like the lowing of a cow. Go figure. Having figured out that it was most likely the lack of extra Vitamin C that caused this dramatic change (because nothing else is different), I began supplementing again about two days ago. I'm noticing some little bit of change for the better; not much, but any relief is something to shout from the rooftops about. Yes, it was that bad. I have no idea how I managed to visit the rheumatologist all the way across the state in such a state. I am certain that I will continue to improve, though I can't say at what rate, and I feel that this experience may have knocked me down a step or two permanently. Alas. It was an important revelation, however. What about Vit. C prevents the burning in my bones and joints, the pain that pervades every single nerve fiber in a flaming gout of misery? I don't know, but I do know that I will never allow myself to run short, ever. This extra amount of pain is the reason for my increased presence on my blog, however. It's been that and reading-- distraction of the mind. Anything to not focus entirely on my agony.

Speaking of the rheum, it was a fairly productive appointment. I informed him of my ever increasing back pain, the pain due to the injury I gave myself during my last bout of narcoleptic-like sleep attacks. I fell asleep while standing at my dresser, taking my meds, and then I fell backwards completely prone and hit my head on the metal frame of the bed. There was nothing I could do to stop myself when I woke up halfway through the fall. I hurt my head, of course, but I also jammed my back somehow when I landed on the hard floor like a piece of bread butter-side-down. When I went to my chiropractor, he said that I had 3 or 4 vertebrae all jammed in together. I've seen him a few times since then, and had several massages, hoping to heal it like I did the subluxated ribs that I got in the hospital about a year ago. It's even the same place that hurts. :( This time it's the spine, primarily, though the ribs are also affected. Mer. Anyway, Dr. S ordered an X-ray, which we both agreed would be the best thing. He could have gone with an MRI, but I asked him to go the cheap route.

As an aside, I worked the numbers recently, just in my head, and I realized that I need a minimum of $400 a month to cover my very basic medical bills and prescriptions and travel costs. That is pretty discouraging to me, especially as I was denied disability again and the only way I can pay that is to beg my dads for money. I hate doing that… which is why I have this low-grade feeling of desperation bubbling through my core at all times, though it increases to a high boil whenever I have to pay any bills outside of that.

Anyway… I shared with Dr. S that I had been denied disability again, and he was incredulous. I told him what the letters said, and he responded with a slightly indignant, "But you have EDS, and you have it bad. I mean, you really have it bad!" That was both slightly discouraging and affirming. I keep hoping for a spontaneous recovery, but my better sense tells me that this won't be the case, especially as my diagnosis list on my rheumatology paperwork still lists Dysautonomia and Inflammatory Polyarthritis as confirmed diagnoses, in addition to all of the endocrine diseases and other fun stuff. I really am amazed at how stubborn I was in previous years, insisting on finishing Bible college despite severe illness of a then-unknown nature… and college classes… and work at the Healing Journey… I really did a lot before my body caved in and became more helpless than before. When I think about all I accomplished (especially all of the backpacking and camping and other achievements from my time in Idaho), I am very proud of myself. I really am a tough chick!

Dr. S ordered several blood tests in addition to the back X-ray which I was able to knock out that day before I went home, but I have to go in for an ultrasound of the hands when I'm in Tucson next. My next visit will include the ultrasounds, a visit to Dr. L, my geneticist, and Dr. R, my cardiologist. Oh hey, did I mention that I've started Physical Therapy? Yes, I have a therapist coming to my home to get me started on a home exercise program. I had to cancel the last appointment, because I was in the throes of my increased pain and fatigue, plus the previous appointment had come right at the threshold of my slipping into old pain-types, and we had definitely over-done it. I am finally recuperated from that visit, but it's been almost a week. She has only 3 more visits she's allowed to make (stupid insurance), but I'm doing pretty well on my own. She just wants to show me what I can progress to, in time, but we are starting very slow and small for now. It does feel good to be working my muscles again, beyond my daily evening walk. Takes me back to my Acrosports days, in a way. I know that by a lot of people's standards these exercises would hardly be "pushing it", but for me and where my body is right now, it is definitely pushing it. It's a good opportunity for me to continue learning how to determine my limits and quit when I need to… despite my urge to keep going. Modified crunches have nothing to do with my worth, but it's hard to believe that thought sometimes, especially when I remember what I used to accomplish. I've fallen pretty far… It's not my fault, though. These are just the consequences of my faulty genes, and I'm making the best of it.

Really, considering how physically miserable I am most of the time, life is actually pretty good. My marriage is doing fine. In fact, things feel better lately than they have for a long time. In another post, I'll talk about the Masquerade Party that we went to, and all the fun stuff connected to it. It's time I ate a little something, took my meds, and surrendered to sleep yet again. Good night, all. (Or morning, if that's where  you're at.)
Do you ever just get really desperate feeling? Is it just me? I mean, not the kind of desperate where you think that you don't want to live anymore or the world would be better off without you, but the kind of desperate where you think, How am I going to keep  making this work? Where am I gonna get the money for these bills that never stop coming?!

I know I'm supposed to ask Bomb Dad for $ to pay the bills-- that's what he wants me to do, that's what he's agreed to, even though he has absolutely no obligation to, especially now that he and Mom are divorced… but he's one of the best people I know. Seriously. And that's why I hate hate hate asking him for money… again. And again. And again and again and again… I asked for several hundred last time, just a few weeks ago… and now I'm already up against a wall and need more. How can this be?! I don't understand how it goes so quick… well, maybe I do. I need at least $300 a month just to get to my pain doctor and back, and to afford the meds, and that's a very conservative estimate.

I'm just… being driven crazy with pain, watching my dwindling supplies of medication... It always freaks me out to be running out when I get close to appointment time, even though I'm supposed to be out in 30 days… I just hate watching it happen. Makes me jumpy. Just a holdover from the years when I couldn't get consistent or adequate help for my pain, and I had to make everything last as long as possible while trying to either get or stay semi-functional.

My ride for the munch is here. More later. I'm hoping that socializing with my friends will help alleviate pain and bring my mood up. Crossed fingers!