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

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

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

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

Our week went something like this…

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

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

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

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

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

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

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

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

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

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

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

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

Corey came home a day early from hunting! So he's been around as I've been slowly wending my way through the day with the intent to pack interspersed with frequent naps. I'm happy that I got to see him before I take off for a week, but it would have been okay had we missed each other like we thought we were going to as well.

I was in bed, just on the edge of slipping into the depths of real sleep after a phone call had awoken me, and I heard the front door open amidst shuffling sounds and a muted jangling of keys. Confession: I can't stand to be encumbered by layers of fabric when I sleep, so I didn't feel that I could jump up to investigate in naught but my birthday suit! I lay there drowsily alert, trying to decipher activity based on the carrying sounds when Corey breezed into the room, all salty, sweaty woodsmoke smell and smiles, bending over the bed to kiss me. It was a warm kiss, but something was awry-- he was eating  licorice!!! (I despise and detest licorice, especially the black kind! Oh, and he knows this quite well.) I determinedly kissed him anyway, but exclaimed afterward how cruel and gross he was, and he grinned and laughed and got a kick out of that.

The day has been a long, slow one. Much resting on my part, and the essential absence of any kind of deadline for being packed or leaving today has been a welcome knowledge. I fell in the shower today when I tried to sit on the stool I have. It slipped out from underneath me and I crashed down, banging my back on the edge of the stool's wooden seat and wrenching my hip a bit. I suppose I shrieked amidst the resounding thump and crash of the fall, so Corey came in to see if I was okay and found me huddled on the floor of the tub, unable to get up by myself and curled in a painful little ball repeating my mantra of "Owwwww, owwwww, ouch, owwww….!" He helped pull me to my feet and I was suddenly incredibly grateful that he'd come back a day early.

My sister in law accompanied me to dinner with the friends of mine that I celebrate the Anniversary with, and we all had a nice early supper at Olive Garden to celebrate the Anniversary. Everyone got along well, which is good. I was not really worried because C is a very charismatic and personable person, but she's not religious at all and my friends are, so I was hoping there wouldn't be a clash of interests or basic world views. We stayed away from the religion topic, though, and all was hale and hearty.

After coming home and all relaxing with books and television shows of choice for a while, I convinced Corey to come cuddle with me as I was going to be falling asleep for a bit (maybe the whole night, maybe just a few hours? I have no clue at this point, though I'm rather hoping for a whole night's sleep). We lay there in the dark for a bit, talking about his hunting trip and how it went, but soon the conversation ebbed away and I found myself dozing off. Just about then Corey got up and left the bed and I was very disappointed that he'd get up and leave just as I as falling asleep. What a super awkward moment to disappear, right? I vocalized my disappointment, but it turns out that he was just closing the door that had been propped open so the cats could come and go as they please. He came back to bed to be with me again and, well, all I have to say is that conjugal relations are awesome, and even if it's been a long time and you feel like a broken record by coming on to your partner again and again without apparent success, keep at it. Keep at it only if you mean it, though; when the time is right a lovely experience will unfold.

I'm gonna come straight out with an honest, brutal truth here that some people may find uncomfortable talking about: stress kills sex drives, and lowers intimacy if you let it. Truthfully, it has been a long time between the last time we were intimate and this time, and that's because we are frazzled a great deal of the time. Sex involves and requires a lot of emotions, and a lot of energy too, and when you're dealing with a mountain of stress being poured over you like a thick, viscous pudding it's really hard to dig up the motivation to do something that isn't "vegging", you know? For me, having sex actually helps me to cope with stress better and it alleviates my depression and anxiety to a degree, but my husband finds himself more drained by the act than I do. I'm revitalized by sex, but he is exhausted. I have a higher, more demanding libido than he does even when things are normal and especially so when things are stressful and out of sync, so that's something that we have both become aware of and keep in mind. It took communication to reach these conclusions, but there was a period of time where I was hurt and confused by his constant rebuffing of my advances; I thought that he no longer wanted me in that way because I had gotten sick, or that maybe he didn't find me attractive anymore, or that he was afraid to hurt me, or that he really just didn't care about me much. I was so wrong, but you can understand how an almost daily (or several times daily) rejection of a flirtatious sexual advance can give the impression that one is unwanted by and unattractive to the object of the flirtation.

Sex can be a huge source of assumptions, miscommunication, frustration, and simmering resentment, anger, and bitterness, and sometimes it's awkward to talk about but you just gotta do it for the health of your relationship. I'm serious. (Plus once you get the kinks worked out and both partners feel understood and validated, you can get some serious toe curling action up in there! If that isn't worth it, I don't know what is.)

Now I'm going to attempt to sleep (again, for however long) and ignore the steadily mounting pain. Falling in the shower and banging yourself up does nothing to alleviate an already worsening flare. Maybe the fatigue will overpower the pain, yeah? Funny how you can play one symptom against another to achieve a benefit to yourself, huh? The Monopoly of Illness, or some such.

I'm sorry I've been so sketchy at writing. It's just that usually I'm so tired and my brain is so fuzzed up that it's hard for me to keep a train of thought going, even during conversation. In addition to that, it seems like things are both not happening at all and yet so many things are happening that I don't have the gumption to write it out. Any feels I have these days I usually cry out in the tub, or into a pillow, or onto Corey's shoulder. (I've also decided, what's up with the aliases? It's hard for me to keep track of them now, and internet anonymity is really kinda not much of a thing these days unless you work really hard at it and I'm just not willing to put that much effort into it anymore.)

I've made some friends, new friends, and one of them drove me to the pain doc in LA yesterday. It was a fun experience… she's basically like a version of myself in 20 years, so we get on great. Anyway, the doc mentioned it last month, but this month he was really emphatic that he thinks I'm dealing with seronegative arthritis, which is arthritis that doesn't show up on blood tests. Next month I've got an appointment in Tucson at the University with the rheumatology department there for a diagnosis. I was thinking EDSH, maybe, but now there's this question of arthritis… maybe it's both? Who knows, really. Maybe it's "just" hypermobility syndrome and also arthritis. I dunno. Whatever the case, I think things are finally starting to get figured out, and that's a relief.

I am so tired of trying to wrangle all of these doctors and appointments and trying to get all of the doctors to work together and communicate and send the dang files when they're supposed to and, just… my goodness. So done.

But I have a "vacation" of sorts coming up in a few days. My sister in law is coming to pick me up and I'm going to spend the better part of a week in Tucson with her and an artist friend, just kicking back and enjoying the sights and being a tourist. Both of them have a clear grasp of my health status and my limitations, and I'm so very grateful for that. I wish I didn't have so many damn limitations, but it is what it is. I'm looking forward to a chance to go have fun, to be out and about and also have reliable rides the entire time, to more or less be catered to I guess? And the last time I took a trip that wasn't for a doctor's appointment was in March, when we went to the Renaissance Festival. Seriously.

Marriage. It's been strained in ways, because of our tight, tight finances. I was denied disability and I'm still working on finding an attorney to appeal it. I had a lead but that closed down today, so I have to keep searching. I only have 30 days. The stress has been hard on both of us, but it's also led us to be very, very honest with one another, to have some good talks, and we've had a lot of fun together as well. There are pros and cons both, as with all things. One reason I had been somewhat unhappy a while back is because I had fallen into that tempting trap of comparing us with others. First of all, we are a unique couple, and healthier than pretty much any other couple I know (neither of us could think of a healthy marriage that we could turn to for mentorship; isn't that horrifically sad?!), but more than that we are dealing with chronic illness and a terribly unique situation. There is no manual for this. We're making it up as we go. Sometimes it's rougher and tougher than others and I cry a lot and feel sad and lonely and unfulfilled, but those times seem to be further and farther between now, especially once I embraced the fact that we have to make our own journey and I have to look for the ways that Corey uniquely expresses his love toward me. He's not a writer or a poet or a very traditionally romantic guy. I'm not going to get grand gestures or sweet notes or thoughtful surprises. He will, however, drive me to and pick me up from a doctor's appointment on a day that he has called in sick (which he never) does because I am not well enough to drive myself any more except on very rare, desperate occasions. He got up earlier than he wanted, while sick, and drove me to the appointment and picked me up, all while not feeling good. THAT, ladies and gentlemen, is love. So, stuff like that. I would love flowers, sure, and he likes to get them for me, but we can't afford that right now. We are having an alarmingly difficult time with basic bills and food, as hard as that is to admit. He is kind of depending on the hope of my getting disability to help us pull through in the long run, but I found out today that I just don't qualify at all for SSDI. I didn't work long enough and recently enough to get credit for that. I really hope I can get SSI, because it's our last hope, really. If I can't get that, I don't know what we're going to do. I just don't. I've been making some crafts in the hope of selling them, but the price for a stall at the swap meets is outrageous! I'm still hoping to sell them, though. That may help a bit on the finance side, but if nothing else then at least it's been a good outlet for me.

There's a lot of feeling overwhelmed for me these days; overwhelmed with feeling lousy almost every second of the day, overwhelmed with juggling doctor's visits and records and lab tests, overwhelmed with paying for all of this doctor stuff, overwhelmed with trying to "be sick right" and eat the right things and take the right supplements and meds and exercise and do everything that I can to keep my health up so it's not my fault, overwhelmed with sorrow that my financially stable husband is now struggling to handle basic life costs because his wife is so high maintenance to just keep alive and semi-functioning.

But, you know, there's also good stuff. There's always good stuff. Life isn't entirely bad, except when I'm going through a particularly bad depression slump, lol. I suppose that instead of feeling pressured to write about everything going on at the moment maybe I should just pop in and write little blurbs here and there, like small anecdotes that give a picture into my actual life rather than just my thought and emotional life. Hell, maybe one of these days I'll actually put together a coherent blog post on a topic, rather than just rambling! Perhaps not. I don't think that's the type of blogger I am, at least not on this blog. This one is for me to come and feeling-vomit and walk away feeling a bit lighter.

Speaking of lighter… I am gaining weight, so much weight, and I can't seem to stop it. I am revising my diet, exercising more (yes, even with the pain!!), trying to eat less… and still I've gained 18 lbs in the last month?! What the hell is that?!?! I don't know what's wrong, I don't' know why this is happening, but I dislike it. I hate it. I don't want to be fat, but I am. Today, though, I looked in the mirror after dressing and I thought to myself, "I am not going to try to look like a skinny girl because I'm not; I'm a big girl. I am a big girl, but I'm still pretty." And I actually felt that, I believed it, and it was a nice place to be mentally.

The cats are going stir crazy because I've kept them inside for the past half a weekish, due to Halloween. People do awful stuff to animals around this time, and I want them to be safe. I have a very strong protective urge that centers around those in my "circle", including my family, pets, friends. I guess I just feel the need to take care of people. It's been bred into me since I was a young'un, living in such unpredictable, dysfunctional environments and being the oldest it made me the caretaker of the kids… and of the adults, after a fashion. That urge has never died, though it has matured, become tempered a bit and and much healthier. Learning about boundaries and implementing them in my life has made a huge honkin' difference, though I know I still have stuff to learn in regards to that. As far as the cats go, they get their freedom tomorrow. As for me, freedom comes in a couple of days, Monday specifically. Unfortunately, the morning I leave is the day of the afternoon that Corey comes home. We're gonna miss each other like ships in the night and I won't see him for over a week by the time I get back, which is gonna be kind of a bummer, but it'll be great to see him when I get back.

And that is a slice of my life as it lays right now.

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

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

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

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

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

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

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

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

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

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

Happy Anniversary, Life!

Okay, this is it. Time for the dreaded and long-awaited summary.

I mentioned about two weeks back that I'd had a craptastic set of doctor's appointments and it was really bumming me out. In the words of Inigo, "Let me explain. No, there is too much. Let me sum up."

Pain doctor came first. It was a different doctor than I'd seen previously (and I liked the previous doctor because he actually freakin' listened to me and explained things!) because of shift changes and whatnot. I got to see one of the founders of the practice, and I was excited. Surely he must be good, because he is one of the founding fathers of this place that had the good doctor I was accustomed to in it, right? Right?

Wrong. He basically came in, spent about 7 minutes telling me that opioids are poison for fibromyalgia and that giving me pain killers is only going to reset my pain threshold at a higher level (my experience of pain, that is, not my ability to bear pain, alas). He is right, and there is medical evidence to support this, and I've heard the theory multiple times. However, given my current circumstances, that's a chance I'm just willing to take. No one has been able to stabilize my condition or get my pain under control yet, and I need those pain killers just to maintain my rockstar disabled lifestyle. It ain't easy being green, you know? Well, I was told by this "pain management specialist" (horse feathers!) that if I didn't have another diagnosis beyond fibromyalgia when I came back in a month for my next refill he was going to take me off of the pain killers.

What.

the.

fuck.

And get this-- not only did he NOT answer any of my questions (like, he just totally ignored them and steamrolled right over me!), he offered no other alternatives either. He never looked at the information I brought him, never talked about managing my pain, just that pain killers are bad and I need to be rid of them. Yeah, sure buddy. But if you would just fucking look at the goddamn pain journal I'd been meticulously keeping, maybe we could put our heads together and come  up with a plan to, oh I don't know, maybe manage my pain? Since this is purportedly a pain management clinic and all. (Though I begin to have my doubts…)

So there was that. The good doctor also pointedly ignored my nearly hysterical weeping over his proposed solution, as well as ignoring my questions and offering no information other than "opioids are poison for fibromyalgia". He said that so many freaking times… Well, I broke down for a good while and cried a lot, but Gramma was there, and was a great support. It wasn't just that I felt totally humiliated and invalidated, but my terror at the thought of a life without pain killers. He could not seem to wrap his mind around how violently ill I become when I have no pain meds, and neither could the head shrinker. I don't understand how they can just write people off like that? My next appointment with the psychiatrist didn't go so well, either. He is prepping me to accept the idea that the pain is somehow psychosomatic, originating from some sort of brain problem you know? (Because I have such a traumatic past and all.) I told him fine, but if it's my brain that's broken can we fix it? The answer I got was that he feels that with therapy I could improve in time. That is no kind of answer, buddy. That's a clever sidestep, and he's full of them. He won't commit to a single point for anything.

He also mentioned that it seems that when a doctor doesn't tell me what I want to hear (i.e. backing a conclusion I've come to on my own) or doesn't help me how I feel that they should then I label them a "bad doctor". I got the sense that he was telling me that the common denominator was me, not that I've had doctors who dicked around for a year and let me get this sick with no testing or anything. I've thought this over and I've since come to the conclusion that, as a patient, it is my right to "doctor shop", as it were. I do not have to put up with inferior health care just because I'm afraid of how it might look to some other doctor. Unfortunately, I do have to keep that in mind, because as a chronic illness patient I will be seeing doctors for a long time to come and if they think I'm doctor shopping to get meds or something I could run into some serious roadblocks. Isn't that so backwards???

So the psych appointment was incredibly disappointing as well, and I was crying so much and so hard that I ended up throwing up in the parking garage. Not a good day. Earlier this week I went back to the hospital in the big city to see my rheum, because I got lucky and they had an opening about a month earlier than my previously scheduled appointment (which would happen after my pain management appointment, thus putting any hope of a diagnosis outside of my one month window), and my grandparents were already going up there for a series of board meetings my gramma had to attend. It worked out great, ride-wise. Grampa dropped Gramma off at her meetings and then took me to my appointment. He even came in the room with me, which was nice because I totally needed moral support.

So here's the thing… The last appt I had with this doctor, I felt pretty disappointed and was upset. He told me he thought my problems were due to fibro, but was willing to look into the autoimmune side of things. This time, I was able to set aside my emotions and see that he really did everything he could and was supposed to do as a doctor, even if the results weren't what I wanted to hear at all. He was compassionate but thorough, and even though he could not think of any left field ideas of what might be ailing me (besides the fibro of course), he patted my shoulder on the way out and said he was sorry. He had to tell me that there's basically nothing he can do for me.

The results of the very comprehensive blood work show that not only do I not have lupus, but I don't have any of the other autoimmune diseases in that constellation of happy fun time. Diagnosis? "Just" fibromyalgia.

Here's the kicker: they (meaning the medical and scientific community) don't know what causes fibro, they barely know how to treat it (of the patients that respond to the medication, which really isn't many, they can expect to see a 20% improvement on average), and there's no cure as of yet. What that means for me on a practical level is, well, a few things...

1.) My pain killers, the only thing keeping me as sane and mobile as I am (which isn't much) are going to be taken away by the good doctor. (Although my next appointment is with a woman PA, and not Dr. Jerkface, so we'll see…)

2.) I have already exhausted all of the typical fibro treatments from both western and eastern medicine, and I'm still declining.

3.) I'm basically screwed. There is no reason to expect a reversal of symptoms, or even a stabilization for that matter. I'm only 26, so I get to look forward to a long life of excruciating pain, debilitating nausea and dizziness, and a whole host of other fun stuff. Best part? It's all due to a disease that some people still don't believe exists! It's not rare. You'd think they'd have more of this figured out by now. Ugh.

4.) The plans, hopes, and dreams I had for my life? They no longer apply. There's a difference between giving up and acknowledging reality and I'm not ready to give up just yet, but it would be sheer foolishness and stupidity to think that though I cannot stand long enough to cook myself a decent meal or sweep our tiny house clean because I get racked with agonizing muscle spasms that I will somehow be able to hike the Grand Canyon rim to rim. I use my walker every time I go out now. It helps alleviate some of the pain of walking and standing, it gives me a place to sit when I feel faint, and it helps me keep my balance and not randomly fall over or trip on nothing.

5.) I probably won't be able to bear children and have a family unless something drastically changes.

I'll write another post later on the feels I have about this whole thing, but I'm still trying to come to grips with the fact that it's "just" fibro. I could have sworn there was something else aggravating the fibro and making it super intense. How can it be this bad on its own? I totally don't understand...

Please forgive what I foresee as inevitable silence over the next few days. Not only am I preparing for my party (YAY!), but I have doctor's appointments to attend and schedule, etc.

Okay, really… a large portion of my silence is going to be due to the fact that I went to the big city yesterday for my regularly scheduled pain doc and psych appointments, and basically they were a disaster that pretty much devastated me. I'm very much afraid for my future right now. Good vibes/prayers appreciated.

A couple of positives from yesterday, though, were quality time with my Gramma, which was so nice. She was just the right person to be there with me when I broke down (again and again), and it was great to have another intelligent person who has had experience with the healthcare field as a patient to validate my thoughts, feelings, and interpretation of the experience. Another was that, for the first time, an able-bodied person actually was abashed and apologized to me when they came out of the handicapped restroom stall that I had been waiting for ('cause the walker). At that same rest stop, I had a very fun conversation with a homeless tramp named David. Cool guy. Very nice, and intelligent as well. He just prefers to life the life of the tramp, traveling from one place to another because why not? I envy him, in some ways. I've wanted to do that for a long time.

So, yes. Yesterday was awful. Kenobi is coming over today (and I might see the Gypsy briefly, if I'm lucky), and I plan to buy some booze and drink away the pain of yesterday (a little-- does apple ale really count?) while watching Disney movies. He has this talk about cleaning my craft room (awwww, how sweet!), but I think I'd rather just collapse into apathy and animated movies. Just... meh. If I was feeling "fuck it all" before, today is that feeling times… times… um… a whole bunch more!

I am grateful that I have the pain meds to make it through this month safely in hand, though. So I can enjoy my birthday, and our Celebirthsary, and guess what? My next appointment, which Drogo will try to get time off to take me to, is on our anniversary. Hah. So we'll get to spend our anniversary together after all, albeit under kinda lame circumstances. No matter. I just enjoy being with the man.

And with that, I'm out.

*radio static*

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…

Doctor's appointment went well. The trip was uneventful, the appointment was productive, and we got to see an old friend for a few hours before heading back home. I plied Grampa with questions about his childhood and teen years and was rewarded with many stories about "the good ol' days". The trip back absolutely flew by as we talked and laughed.

The doc wants me to get further allergy testing as well as to continue to pursue the autoimmune/systemic angle that we are working with the rheum. He really thinks that aqua therapy will benefit me, but the only place in town that does it isn't accepting new patients. I must be a patient patient. lol.

He prescribed muscle relaxers to go along with the pain meds, and boy, let me tell you… they work! I can hardly keep my eyes open as I type this, so I'm going to wrap it up and go collapse into bed with my beloved. (I'm seeing double now. Glad I don't drive anymore! This would be super dangerous.)

So I pretty much had the craziest Monday of my life. It was long, involved, looooong, and there was a great deal of pain present, not just mine. Here's what went down…

I had an appointment scheduled with a pain clinic for 8:30 am on Monday. I couldn't get anyone else to drive me, so M left the ren faire she was working early Sunday evening to crash on our couch and drive me up early Monday morning.

3:30 am-- We hit the road in C's truck. M is driving while I am filling out the 27 pages of New Patient paperwork I printed out the night before. (I never got a packet in the mail.) A few hours later, I doze intermittently while M keeps driving.

6:30 am-- I snap awake in time to scream as M slams on the brakes and hits the car in front of us. Traffic just kind of… stopped… but we didn't. At least, not in time. The car in front of us was pushed into the car in front of them, and was totaled. The car at the far front just had a little bit of a smashed bumper, and they were able to drive away. M was injured in the accident with soft tissue damage to her wrist and ankle but refused treatment because she had to get me to my pain doc appointment. She helped me to mix up my emergency steroid shot and I stabbed myself in the leg for the injection, to avoid going into adrenal shock. An hour and a half of procedures and such later, I took over driving the now snub-nosed truck and we made it to the pain clinic with 15 minutes to spare.

8:15 am-- The secretary has no record of me in their system, and insists that I have no appointment with them. I am devastated, baffled, and slightly upset as they were the ones that called me to set up the appointment. We go outside and I proceed to fall apart emotionally. It's now been about 12 hours since my last pain killer (which was only 1/2 of one since I had been on half-doses that week, trying to make them stretch), and I have no option for getting more. M has an idea, and we pull up the phone number of the pain clinic that the neuros initially referred me to but had turned me away, and sure enough… I took us to the wrong place. It's now time for my appointment, and we're 1.5 hours away. They agree to try to fit me in at some point in the day, and we jump in the truck and book it over there. (In my defense, I have been drugged up on sleeping pills the past week and a half-ish, and the difference between Arizona Pain Institute and Arizona Pain Specialists really isn't that great. I think my confusion is justifiable.)

12:30 pm-- I'm now laying on the floor of the pain clinic, since I can't handle being upright any longer. They take me back to a room so I can lay on a bed thingy at least while I wait for the doctor, and I finally break down into tears from the pain. The nurse comes in, takes my vitals and information, and not too long after the doc comes in. It was a good appointment, and he takes me seriously. He is really happy to hear what rheum I am seeing and says that he's one of the best. He feels that there is something systemic, possibly autoimmune, that is causing the scope and severity of my pain beyond just fibro. (Finally, a doctor that agrees with me!!!) He prescribes me my regular pain killers along with aqua therapy, but I have to pass a urine test before I get my prescription. Makes sense. I make it to the bathroom before throwing up from pain, but then realize that they gave me the sample cup for some other woman. They bring the the right cup, I make it to the bathroom before throwing up (again), and pass my urine test. Sign a contract for responsible usage, get my script, and hit the road in search of a pharmacy.

???? pm-- The CVS down the street doesn't have the meds I need, but they suggest the Walgreens across the street. We get over there, they have the meds, but it'll be like, 30 minutes. While we wait, we fill up the gas tank and hit the Starbuck's for some tea (me) and coffee (M). Keep in mind that M is damaged this whole time, and is getting increasingly stiffer and sorer from the accident. She's still driving me around like a champ, though, limping along beside me and my walker, and even pushing me once or twice. I can barely walk at this point, and my pain has been at a 9+ for hours. I've only cried a little since leaving the doctor's office, but it's getting harder and harder to handle my pain.

As M is getting in the truck after pumping gas, we're approached by some white guy who claims that he's a Marine and served _____ places for ______ months and has $1600 in a bank account, but the bank doesn't have any branches around here and he's going to get it transferred to his wife's Wells Fargo account tomorrow but he doesn't have any money today and he needs to get gas in his car so he can go pick up his four year old daughter from daycare and they charge $20 for every 30 minutes you're late and can we spare some money to help him and he'll even give us his driver's license to hold until he pays us back? I say no, M says no, and he begins to protest. We tell him we don't live here, we're leaving in a few minutes, and he asks if we have an address he can send it to? I'm just like, "Nah, bro. We can't help you. No." He gives up and goes away, and M and I talk about all the inconsistencies in his story, which are many. I knew he was trying to scam us right away when he began swamping jus with unnecessary details. That's a pretty sure indicator that someone is lying to you, trying to convince you of the "truth" of their story.

We make it back to Walgreens and get my pills, which were cheaper than I expected. (Hallelujah!) As we are walking/limping/shuffling away from the pharmacy counter, I suddenly felt very faint and knew that I was going to pass out. I said so to M, "I'm gonna pass out," and knelt down with my head resting on the walker seat. After that, it's kinda fuzzy. I guess I slumped over and ended up on the floor with my face super pale followed by flushing, and was more or less unresponsive. (I remember bits and pieces, but most of this is what M told me and I just kind of gut feel that it's right.) A lady who was standing in the aisle came over and helped M get my sweater partially off so that I could cool down because I was very warm and sweating, and they took the pillow off of my walker seat and put it under my head. The lady in the white sweater held my hands and massaged them to get the oxygen back into them (my hands and face were numb, and I was hyperventilating some I guess) while M pulled my purse off of me. The male pharmacist came over and was also holding my hands (how many hands did I have?!), and another female employee was there as well, I think. Everyone was patronizing me, telling me what a good job I was doing and to keep breathing steadily, deep breaths, in through my nose and out through my mouth. They told me to squeeze their hands if I needed to, as hard as I needed, and as I was writhing on the floor they kept telling me to lay however was comfortable for me. The pharmacist told me to go to my happy place and I laughed. He said that his happy place would be under a race car, scraping off mud. I laughed again and told him that sounded like a crappy happy place. He said something about how he loves to race, anything involving that would be his happy place.

By this time, someone had called 911 and blocked off the aisle so that no curious onlookers could crowd around. (I never opened my eyes through all of this, so I don't know what anyone or anything looked like.) At some point, M tells me that I started screaming. Loudly. I hurt, okay? I know that I broke down and started crying, but apparently I was screaming/wailing very loudly while doing so. I don't recall that. I did wave my medic alert bracelet at them at one point, and they were questioning M as to whether or not we were together. She said, "Yes, we're together. She's one of my best friends!" (That's heartwarming to me ^_^) I somehow told them that the meds in the database for my bracelet weren't entirely up to date (they are changing so much and so rapidly lately!), so M went out to the truck for my big binder of medical info. I am so glad I have that thing!! I think the EMTs were there by the time she got back, but they wouldn't talk to her about what was going on. They wanted to hear it from me, probably to know that I wasn't delirious or anything.

I started getting my breath back and becoming more aware of my surroundings when the EMTs were working on me, so I was able to answer their questions. One of them asked me if I had any medical conditions, and I laughed at him. Then he asked me what medications I was on and I laughed at him again. I mean, I told him, but I laughed first. They got me sitting up, and then standing, and it was decided that I would just take a pain killer and try to make it back to our town. Since my case is so complex, with so many overlapping conditions, there really wasn't much they could do for me besides take me in to the hospital which I did NOT want to do. (We're kinda tight on funds right now, with all this traveling to the big city for my appointments, and ambulance rides and hospital visits are expensive. Not to mention the fact that we wrecked the truck that morning, too…) The EMT guy was like, "We can take you in, but you know your body and we don't. Do you think you'll be okay with just taking a pain killer? Is that what you think you need?" M and I agreed that it probably was, so I got them to push me out to the truck on my walker so M wouldn't have to, since I didn't really want to try my luck walking again. Somehow I ended up with a bottle of water that I drank, but it had no lid.

When the ambulance was at the crash scene that morning, I had insisted that M go with them to get checked out since she was obviously in a great deal of pain. She was so emphatic that she had to stay with me to get me to my appointment, and she was so cocky about how it was a good thing that she didn't go with them that morning or else I would have been dealing with all of that by myself and obviously I needed her. Yeah, yeah, yeah… lol. When the EMTs showed up, I waved vaguely in the direction of M's voice and said, "You're supposed to be the one going with the ambulance, f***er!" (I have found that swearing makes me feel better, but I think I should cut down on the habit since I have been doing it some very inappropriate places lately… such as when my mental capacity is diminished and/or I'm in a great deal of pain. Last time I got a steroid and pain killer shot at my doctor's office, I dropped a very loud f-bomb because it hurt SO. BAD. I thought it was in my head, but C was laughing at me and informed me that it was, well, out loud. Oops.)

The EMTs asked me what my pain level was at once they got me standing, and I immediately answered, "10. Wait, no… 9.5. I'm saving my 10." That day without meds was definitely the most pain I've gone through yet with this whatever-the-heck-disease-this-is. Every time I have to go without pain meds, it's worse. Now though, I've got consistent, established care with a pain doc and I won't have to worry about trying to scramble for meds. Well, I won't have to worry if I stick to the regimen of 4 a day. I know now that I can handle extreme amounts of pain, especially if I have sleeping pills on hand. I just know that I can't expect to have much of a social, professional, or personal life for a while yet. Not on only 4 pain killers a day. I'm not working anymore (which is also contributing to our financial crunch), so that pressure is off a little… I can pretty much just stay in bed. Not that I want to, but I gotta lower my expectations so that I can actually mentally make it through on 4 pills a day, without such a strong temptation to take more. I rationed out the correct amount of pills into my pill organizer and gave the big bottle of pills to C to hide. I told him that I'll come to him on refill day and ask for it back, then when I've refilled for the week I'll give it back to him to hide away again. Seeing the small amount of pills I have for every day will help me be less free with my consumption, because when I have the big bottle I'm digging my pills out of it's easy to think, "Oh I have plenty left… It won't hurt to take one extra right now, 'cause I'm really hurting…" Well, I have to realize that I'm pretty much always "really hurting" now, and I can't escape that.

Anyway, we got me packed into the truck and M drove us back home. The closer we got, the more pain she was in, so I stayed awake to chat with her and distract her from her pain (and mine). At my insistence, we met her mom at the ER as soon as we got into town and I left M with her. Guy M literally ran over to the hospital from his girlfriend's house (his ride fell through) and he drove me home in C's truck. He also spent the evening with me until C got home, which was nice. M finally got out of the ER at about 3 this morning (we got her checked in at the front desk about 7:30 pm), but fortunately she's only banged and bruised up. She was having chest pains even before we began our trip and could hardly eat or drink a thing the whole time, but that was determined to be an esophageal issue, and she will be following up with her primary care for that. (She had me worried! I was like, heart problems? Noooo!) The officer at the scene of the crash was talking to M and I just before we left the scene, and after I told him that I had wanted M to go get checked out he looked at me and said, "Why is she driving if you're not in any pain?" I was like, "Ohhhh, I'm in pain! I'm always in pain." It was funny. There were so many funny moments scattered throughout the craziness of the day, but the moral of the whole story is that M is a badass and an amazingly loyal caretaker and friend. We've decided that in the interest of simplicity, we're simply going to identify as sisters from here on out. It's just easier that way.

C took the news of his crushed truck surprisingly well, but he's definitely distressed about it. He had been planning to pay off a significant portion of the loan on it with his tax return, and also to put a chunk of money towards a new car for me since mine is set to crap out on us at any time. (It makes him nervous to be driving my car around, since he's afraid that it'll break down on him on the way to work.) Instead, he'll be paying the insurance deductible to get the truck fixed, as it's leaking oil in addition to the body work it needs. I'm really glad that it got us through all the running around we needed to do. We also have had to give up on the idea of the Celebirthsary that we were hoping to do, but I'm not as devastated as I might be since that was a tenuous hope at best to begin with. He wasn't sure we'd have the funds for it even before this happened. Guy M said something about how M was distraught over the idea of us not being able to have our Celebirthsary and how they were going to make it happen or some such, but I don't know if C will accept that. He has a proud streak… but I'm not above accepting charity! LOL. I'm just happy we got to go to one ren faire, even if it wasn't my favorite one. I knew that even if we got up there we wouldn't be able to do a nice dinner or go to the adult toy store like I wanted, but we'd at least have a decent hotel room and a day at the faire. But maybe I can put together a stay-cation for us here? Something, at least. I mean, our first wedding anniversary… it's kind of a big deal. Plus you've got our birthdays on either side of it, hence the Celebirthsary.

Oh, for those of you who haven't seen it, this video is the origin of the term "Celebirthsary". It's hilarious because C and I are so much like that couple. I mean, I don't go to trick C, but I love to celebrate anything, whereas C doesn't celebrate anything if he doesn't have to. The man doesn't even want a Valentine's card. He told me not to get him a card for anything, every, any occasion. Hah. Like I'm going to follow that rule!

So yeah. There you have it. My longest, craziest Monday ever. I'm still recovering from it (pretty much haven't budged from the couch), and I almost passed out again this morning, but I laid down in time and got it under control. I ordered myself a small pizza this afternoon and ate the whole thing by myself in one sitting. It was delicious and I totally savored it… until I started throwing it up several hours later. M said he totally knew that was going to happen. I guess I need to stop eating pizza. This is the 3rd one inside of 2 weeks… and I'm allergic to a lot of the stuff that makes it up. If I want to be kind to my body, I'll knock it off. But oh… I want to be kind to my taste buds, too! I figured I deserved an indulgence after a day like that… but maybe next time I'll indulge in something else. Like cheesecake. Except I don't know of any place that delivers cheesecake...

Today is the gear-up, preparation day for The Appointments tomorrow.

As I was drifting off to sleep last night, I realized that I am very, very anxious about what is going to transpire tomorrow with the rheumatologist. The psychologist? I could care less. Well, okay, that's not entirely true. The psych will have control over my antidepressant, I'm sure, and that has definitely had an impact on my overall functioning. However, if I were given the choice between my antidepressant and my pain meds… I think we all know which way I'd go. Antidepressants, duh! (I kid, I kid!)

I just… I mean… I'm terrified, y'all. Just so petrified. So, so anxious that my symptoms will be downplayed again, that I'll be told I'm prone to exaggeration again, that my coping mechanisms will be called into question again (without offering any assistance or anything), that my pain won't be taken seriously again, and that it's going to be harder than filling a sieve with Jello to get adequate pain management again, and that I will just end up spending another year getting sicker and sicker and in more and more pain without anyone in the medical community bothering to figure out what's really going on. It's like… this could either be really good or really bad. I'm terrified. I don't know what to expect, but my experience with this stuff so far does not have me exactly resting at ease.

But… I will do my best to come prepared with all the information and documentation that I can to make this as smooth and painless as possible.

Besides gathering all my supplies for tomorrow, I'm hoping to be able to do some more cleaning and tidying of the house. Will that actually happen? I'm uncertain. The pain is pretty persistent and gnawing today, so we'll see. C helped me clean yesterday, mopping the floor after I swept as well as helping me make the bed after I washed all the linens. That has taken a tremendous load off of my mind. I've been bothered by the dirtiness of the floor for weeks now, but unable to do the task myself. Then, of course, I ran out of meds and wasn't doing a damn thing, so mopping was out of the question. Today, I'd like to get the dishes done (since I went through pretty much every single dish while sick, because doing dishes? Hah. Right.) and clean the bathrooms. Dusting would be nice, too, as well as putting away the laundry I did yesterday. If I only get one "cleaning" thing done today, though, it's gotta be the dishes. Well, that and my laundry. How I wish I could do it all in one blazing, glorious, Spring Cleaning type day! To think that I used to HATE the weekends because Mom would want to get all the cleaning that had been put off throughout the week done on Sunday, and of course we were obligated to help. Now I'd give anything to be able to take a day and just clean the house really well. Of course, I try to employ the method that Mom never quite got the hang of, which is tidying up throughout the day and week so it doesn't all pile up and necessitate an all-or-nothing cleaning binge. I'm sure it's harder with kids, but it's also pretty damn hard with chronic pain, too.

So that's the plan for today. Eat, clean, and be merry, for tomorrow I may want to die.

Oh, and quick side note of great importance? The local ren faire is next weekend! Whoop whoop! I'm so excited. I look forward to this all year.

What a trip that was; what a trip, indeed! Yes, I feel good about how it went. I feel good about the fact that I was there, and I feel good about what I "accomplished" in terms of being there for my sister and my family. It seems that they kinda like having me around or something. Heh. My brother said, "If Cassie doesn't come home for Christmas, then the holiday spirit is just gone!" Awww :) I'm his Ghost of Christmas Present! Or Past... whichever one is more fun and amazing. Just so long as I'm not the Ghost of Christmas Future. That guy is pretty grim.

Apparently J ended back up in the Nut Hut (mental health unit of the hospital) shortly after I left for suicidal impulses again. If I were going to look at that as any sort of indicator on how well I "did my job", I still wouldn't really know, because either I did so well at supporting her that she didn't need to go to the hospital while I was there or I was bad enough at it that she felt the need to seek professional help. I prefer to think it's the former, though neither one is necessarily even applicable. It is what it is. I did talk to both her and C while I was there, though, and there's a 90% certainty that she will be moving in with C and I for a while after she graduates. It'll be good for her to have the stability of our home, I will have someone around to help me with the house and basic life tasks, she can go through the HJ program, and she can see what a good, healthy marriage looks like. That's something she's not going to get pretty much anywhere else in the family or her friend group, sad to say.

Speaking of the HJ, I found out yesterday that we have had office space donated to us!!! That means that we'll have actual headquarters! No more of this "working out of a spare bedroom" stuff anymore. And it's a LOT closer to home for me, so it will be easier to get to, not to mention that I can come and go as I please. I can work at the office when I feel well and not have to fuss with coordinating rides and days and stuff with E any longer. Such a relief. And this will greatly facilitate my goal of getting the HJ (and E especially) more organized.

Since my health has taken (yet another) hit and I'm not doing so well, I was afraid that I'd have to really back off in my involvement with the HJ... and as a consequence, earn less money. I'm not in it for the money at all, except for the little bit of me that is in it for the money... because, let's be honest, bills have got to be paid. So this new development is a relief, frankly. I think it will make the job more sustainable for me until I can get well enough to work like a normal person again.

As I'm sitting here, typing away, I'm looking around at the walls of my living room and at all of the pictures and things we have hanging up. They all make me smile for one reason or another because every single thing has a backstory and a memory attached to it. There is nothing in our home that is for useless show, really, and I like that. Just a random thought.

Another thing that makes me smile: shiny stuff! Since I've gained weight and since my symptoms have increased in severity, I find myself unable to wear my wedding ring most of the time because it cuts into my finger now and is uncomfortable. My swollen fingers make a larger sized ring necessary. (That just goes to show the difference... a year ago, when I was engaged, I had a hard time with the ring almost falling off my finger because it was so loose on me!) While I was visiting the fam I bought myself a very dainty and thin silver band to wear with/instead of my wedding ring. When I showed it to C upon returning he said that we just needed to get me another ring in a larger size to wear on the days when my hands are swollen. I took to that idea immediately because, hello, shiny stuff, so I spent the last couple of days compiling rings that I like and presented them to C last night for his selection. I wanted him to have the final choice, that way it is something that came from him, you know? But my compiling the list guaranteed that I would like any of the ones he chose. Well, we pored over Etsy last night and he went ahead and purchased one. Behold, my alternate wedding ring!

There were many beautiful choices, but we both agreed that this one represents my personality and style best.

Oh, and I also (finally) got a dresser for my clothes! That's a good thing, as the big blue suitcase I was keeping my clothes in on the closet floor bit the dust when I used it for the trip home. So now I have three whole drawers to keep my things in. I haven't put anything in it today, but that's on the agenda for today. I'm ecstatic! (You know your life is bit dull when something as mundane as a dresser is cause for merriment and joy.)

So that's life for now. Just enjoying being back home in my own routine with C again. I didn't miss him, really, until I saw him again... and by that I didn't realize that I missed him until I had him again. I kept myself pretty occupied while back east. Not to be all mushy and stuff, but I really do love that man. Just standing around the kitchen with him and waiting for water to boil is a satisfying and enjoyable event. I'm so glad I married him. He's good people, and he's at his best with me. Love him.

The kitties know something's up. Coraline is more of a shadow than usual, and Juneaux is alternating between feisty, needy, and shadowing me.

I gave C one of his christmas presents early... as in, tonight. It came in the mail today and I just. could. not. wait. I think my getting him stuff is more for me than for him! lol I love to give gifts, what can I say? A friend of mine from the massage program came over today to give me a full body massage, free of charge. She not only needs the practice, she is concerned about my health and pain levels and wants to help. I had a present for her, as well, which she opened. It was a hot and cold stone massage kit, which was perfect because she had been borrowing the instructors stones and now she has some of her own! It even has an ambient music cd with it. She was thrilled, and I was ecstatic at how well it fit her wants and needs. :) I LOVE making people happy!

There is drama on the home front... Not mine, but the far-flung home front that I will be traveling to. I'm half wary of going, half super excited about seeing the folks and being the emotional support that I know they need. I just feel super ill-equipped for this. Can I really make a difference? We shall see...

I'm done packing except for toiletries, which I will put away after I take a shower. (Apparently my mom's new house doesn't have a shower yet! Or a fridge. I'm a little concerned about creature comforts... but she has a couch, a bed, and the house is well heated. And allegedly the stove was going in today. Heh. I do love adventures!) So, off to the shower with me! Perhaps it will help to alleviate some of this accursed pain! (I so way overdid it yesterday. But it was worth it, I think. But oh man... ouch!!!)

This is "David" the plant, and the lily that bloomed today.

I've been anxiously awaiting the blooming of this particular flower. I sincerely hoped that it would open before I took off to go see the fam, and I was rewarded today for my patience and hope. I texted all of the S's to tell them about it, and then I went to D's fb page and left him this message:

"I have a plant named "David". Actually, it's a collection of plants, all in one basket. It was at your memorial service, and the ladies didn't have room to take it back to Id with them. Actually, I wanted it anyway, since I didn't have anything to connect me with you, really. K got your guitar, J got your Bible and I got...? I know I'm not your real daughter, but I still wanted something of yours to hold and remember you by.

Well, the plant is flourishing. I feel like it's fitting, since you were such a plant guy, that my connection to you should be plants. It's doing so well, in fact, that it sent up a flower, a pure white lily. I've been anxiously waiting for it to open, hoping that it would happen before I left for the month. After all, I never did get to see my tulips bloom, either. Not once. But the memory of talking over the pros and cons of the various kinds with you and your obvious pride in my selections is enough for me.

It opened today. I think you'd be proud of me. Your girls and C all agree that you would, and that's enough to bring me to tears. I want you to be proud of me. I miss you. I miss you so much! I am always crying when I come on here to write to you! It's funny. But not. Because I miss you... so much. I'm glad I got to see your lily open."

The kitties love being outdoors. That's Juneaux by the table and Coraline in the "grass". (Weeds. They're weeds.) When I wake up I open the back door for them, and they come and go throughout the morning. When C wakes up I shut the door and open our bedroom window. Since it doesn't have a screen, it's become the "cat door". C has plans to get a screen for it and then cut a hole in the back door somehow and install a real cat door so they can come and go as they please. He wants to get them to the point where they go to the bathroom outside and we no longer have to have a litterbox. We'll see about that one. The ground is too hard for them to want to do their business out there, I think. Hard packed. Not diggable.

I'm slowly but surely preparing for my big trip back east. I got my packing list all spec'd out, and I wrapped/prepared for packing all of my Christmas presents last night. I also finished the sorting of the HJ's massive stash of handouts, and I will put together a binder of pertinent handouts for J to have. Hopefully it helps her. She seems to be looking forward to taking care of me while I'm there: painting my toenails for me, making me tea in the morning, cooking for me... It is going to be strange, allowing myself to be taken care of. I am so used to being the caretaker and peacekeeper for my family. I've been the second mama most of my life. And now... now I'm basically helpless. All I can do is offer emotional support and what wisdom and lessons I've gleaned through the years. Then again... everything works out alright. Maybe this is exactly what they need right now, when they're all so broken... Maybe they need someone to take care of and nurture who will love them for it, to heal the sadness within themselves. That's what Juneaux did for me while I was facing down my demons. Maybe this is just right. We shall see.

I have been much more stable emotionally these past few days. I think C was right, and that the accidental withdrawal from my antidepressants was affecting me more than I realized. It does help tremendously to stabilize me. I have also identified the trigger for this round of suicidal ideations, and that is the anxiety of running out of pain killers. I have to consciously stop myself from worrying about what will happen when I run out and thinking about trying to survive without them; I cannot think about how sick I will become and how overwhelming the pain will be. It's too much. I have worked out a few possible options to make sure that doesn't happen (all legal, thankyouverymuch), and now I will let the matter rest. I will deal with it if it comes up, but then and ONLY then.

So now I will finish my chick flick while putting together J's binder and drinking delicious tea from my bestie J. I think we've finally worked out my being able to see her after all! Suh-weet! Her family is so wonderful and understanding. I got this message from her yesterday:
"My dad's response to learning about the situation with your appointment - "Ah Birdie, we completely understand and would want her to do this at any cost.
Work something out with the airline, but if not, well, we support the industry; may it 'live forever'.""