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.

I'm so stressed, you guys. I have prescriptions I need to pick up tomorrow, but I can't afford the $15 to get them. I have a massage scheduled for tomorrow as well, which is one of the only things keeping me able to still walk right now, but there's no way in hell I can afford that. I could get my scripts, but then I wouldn't be able to pay my phone bill… and somehow I still have to make it to Phoenix twice and LA once this coming month for important doctor's appointments. Oh yeah, and the pharmacy in LA I got my pain meds filled at shorted me (and some other patients), and I've been trying to get it straightened out since Monday, but I'm running out today and I'm afraid I'm going to end up back in the hospital again… Damnit. I just don't know what to do. What can I possibly do that I'm not already doing? 

The worst thing is how unfair this is to Drogo. He has always worked hard, saved as much as he can, been responsible with his money, and the present is no exception. He just can't seem to catch a break, though. When it seems we're about to come even and he might be able to get a handle on his bills again and even sock away a hundred or two dollars, something breaks or is more expensive than anticipated, or some new bill crops up. Without fail. He is such a trooper, but how long can he last under such a strain? The poor man feels like a failure, but he is one of the most valiant men I know. How unfair is that? And it kills me that I am the source of this pain and stress. I hate it. I hate myself sometimes for being the instigator of bills that I am.

It's no wonder Drogo and I are having relationship problems from stress. We're both freaking the fuck out, trying to figure out how to just SURVIVE. I hate this. I hate this so much. Being sick is stupid. I have to believe that it will work out somehow, someway… but I really do not see it happening at this point, and it terrifies me.

I've done what I can-- created the fund raiser, sent links/pleas to every single person on my Facebook friend list, even sent the link and an appeal to some pages and businesses that I know… asking them to at least repost the link so that someone, somewhere might see it and have pity on us. I'm working on the inventory and production for my craft booth I've got planned for this winter. I haven't even put any money into supplies-- I'm just using what I've accumulated over the years. I applied for disability and we're just waiting, waiting, waiting… what else can I do? Seriously, what else can I do???

I'm stressed, scared, sick, and generally distraught… but I still have to believe that it will work out. We're doing the best we can. Life rewards that, right? Hard work, sacrifice, integrity… those all pay off in the end, yeah? I hope so. I genuinely, sincerely hope so. 

So my mom is bipolar.

Yeah, that kind of threw me for a loop as well. I guess it makes sense… but the funny/weird part is that I've been questioned several times on whether I am bipolar or not as well. My psychiatrist, though, says he thinks not. I'm just very… expressive, and I have a wide range of emotions. *Whew!*

And my sister is back in the hospital, because her drug counselor felt that with all of the stressors in her life right now she might swing towards suicidal tendencies again, so he advised her to check herself in while she was still doing "okay". That makes sense, I suppose. Kind of like a preemptive strike. I'm really glad she's getting the help she needs; I hope Mom can, too.

As far as real life goes, I've been sleeping most of the past 2 days. Drogo's truck A/C went out Monday while we were running errands at the peak of the day (just how the timing worked out), and it was probably 111. The heat really got to me, it would seem, because when we came home I went to bed and didn't really get back up until today midmorning. I found out when I woke up around 11:30 last night that Drogo's truck broke on the way home from work. Fortunately, the parking lot he pulled into, which was literally the next available turn he could take, was the lot of his brother's apartment complex! Fortuitous, no? At any rate, that has me kinda panicked because I've got an emergency appt with my pain doc tomorrow, and it's going to be $120 at least. 

We are literally hand to mouth right now; I don't know how we're going to pull this off… except that the mechanic Drogo goes to is real good friends with Drogo's dad and holds the whole family in high esteem, so I think they'll do a payment plan. Just like the chiropractor I've had to see a couple of times in the past week and a half-- he was a teacher of mine while I was studying for massage therapy, so he is extending me a special circumstance payment plan dealie. I was his best student, and we've always gotten along well, plus I trust him as a doctor more than any other chiropractor in this town. Did I mention that I figured out I had subluxated my ribs along my mid back while I was in the hospital? I don't know how you can knock your ribs out while just laying there, but the bed was kinda hard… And then yesterday, while sleeping, I did something to my hip. I'm hoping it's just a pulled muscle and that I didn't subluxate that, too! Wouldn't surprise me, though, with the type of EDS that I suspect I have.

So that's me and my woes. Life is good, though. Drogo is still working, we've got food and so do the cats, and they are hilarious and the light of my life. Gramma will be taking me to the pain doctor tomorrow, and her car is fairly comfy, but the best part is that I know for certain she'll cover gas expenses! Their car is pretty new, and it's nice, so it gets good mileage. Besides, we couldn't take Drogo's truck now even if we wanted to, and it was an emergency appt so he doesn't have the time off. It'll be good to have Gramma with me. She's new to the world of chronic illness and pain, but she and Grampa have both been troopers. She has been with me during several very disappointing and unsatisfactory appointments so she knows the emotions of that, and it was while I was staying with them after the hospital that I found the intractable pain clinic that gave me so much hope and led me to this pain doc. I was legitimately crying tears of happiness, hope, and relief when I brought the information in to tell Gramma and Grampa about it, so it'll be neat for her to come along and actually see the fruits of that.

I accomplished several things this morning, and I'm tired again, so I think I'll tuck in for a bit of a nap. Fingers crossed about my appointment tomorrow! I sincerely hope we can find a combination that both controls my pain and doesn't shred my intestines all bloody.

Oh, hey, real quick-- I wore my tiara to the chiropractor's because it was a tough day, and on the way out his wife/the secretary gave me a magic wand to go with it! It's an iridescent pink fabric heart with some pink ribbon streamers on a slim, pink ribboned dowel. I intend to bling it up further, and take it with me when I go back of course. I just thought that was really cool of her. ^_^

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

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

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

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

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

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

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

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

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

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...

Don't worry, I'm better now.

C came home, and I spilled my guts to him. He sat on the couch with me, my legs across his lap, and rubbed my aching knees while I cried and blathered on about what was going on with me. He listened attentively, gave me wonderful long hugs and cuddles, and then sent me to the tub for a soak to ease some of my pain and help me unwind further. Oh, how can I forget the awesome words of affirmation he gave me as well? I'll get to that, though. It makes more sense in context.

While talking to C, I was able to kind of pinpoint some of the factors that brought me to the sad place I was in last night. First of all, I did some research yesterday morning on alternate names for soy and gluten hidden in foods. It was... discouraging. The list is incredibly long, especially for soy, and I've been unknowingly ingesting soy in some of the foods I had previously thought were safe. I'm not as concerned about the gluten, and the list is shorter for that one, but I am definitely sensitive to soy and want to stay away from it. I guess I was just frustrated by the thought of having to refine my diet even further, and this means that I am going to have to do more cooking. That thought is daunting, because I often am so tired and ill and in pain that cooking is difficult. Now I have to cook, because I can't just get stuff from the store. I mean, can't I catch a break?!

So there was that. And then I went to work, even though I really didn't feel like it. At the end of the work day, we stopped by the store to buy turkeys for the turkey boxes we're giving away to several families. The lifting of the turkeys in and out of the cart, the walking around, and the waiting at the register for 15-ish minutes while the clerk messed things up several times took a toll on me. By the time I got home I was aching fiercely. I had decided earlier that I would not be able to participate in the bar tending fund raiser that's coming up for the HJ which discouraged me some, because I feel like I'm always letting the agency down and it was just another indicator of how much things have changed for me, how much I can't do anymore. The trip to the store validated my decision, but that didn't encourage me any.

On the way home I stopped by the store to pick up my pain killer prescription, which I had to buy without insurance this time for slightly complex reasons. I had expected it to be forty, fifty dollars maybe, as it was several months ago when I had to do the same thing. Because I am taking a different sort of med, though, it came out to over one hundred dollars. All that for less than a month's worth of semi-functioning capability. If that wasn't depressing enough, that also means that my credit card is now maxed out. It's not like I've used it for frivolous things, but having to live off of it for a while last year, various medical expenses, groceries from time to time, and household items when we first bought the house have all added up. I pay on it regularly, but I don't have much in the way of disposable income so it doesn't make much of a dent. The sicker I get, the harder it gets to pay on it... and the more I end up having to use it. It's a vicious cycle.

I've always had difficulties relating with money, but not in the sense that I have a hard time managing it. I'm good with money, when I'm able to make it lol.  No, the difficulties I have are that I don't feel worth it being spent on me. The high price of my pain meds was a blow to me, because C will be the one that gives me the money to pay that off, and I question deeply whether I'm worth it or not. I don't feel that I am. I hate being in debt for any reason, and I'm in the largest non-tuition related debt I've ever been in. I feel like I'm failing at life (for so many reasons) and I'm just dragging C down with me.

I think the money thing, the high price and the maxed out credit card, was the deeply insecure straw that broke the neurotic camel's back. The blow to my already wavering self-worth and self-confidence was fierce, and then I came home to a messy house that I hadn't had the energy or  good enough health to clean in several days. I was hurting, discouraged, and found myself thinking, "What's the point? Why should I even keep trying? I can't seem to make this work. I'm failing at life, and I'm taking C down with me. Am I worth this effort?"

Well, C's love, listening, and words of affirmation really did a lot to boost my spirits. When I was exploring my feelings about money and self-worth, he told me, "You are worth more than money." He also laid out his financial plan for the next few months, which put my heart at rest some. We're going to be okay. I am not breaking him financially. We're going to get through this. It's going to be okay.

Most importantly of all, the look of pure, overwhelming love in his eyes as he stroked my face, held me close, and kissed me deeply buoyed me up like nothing else could have. Even after I had just spent the better part of half an hour rambling and crying and being sad all over him, he still had nothing but love and support for me. I knew I knew what I was doing when I married the guy. Sometimes all it takes is just for someone to listen, affirm, support, and accept to really turn things around. I went to bed happy and fell asleep quite quickly, which was a relief.

Tomorrow is his day off, and I'm looking forward to spending the day together. (Well, if I ever get back to bed. I spent most of yesterday and last night sleeping, but I woke up a few hours ago from pain so I've just been watching movies while waiting for it to die down enough to sleep again.)

So what happened, you ask, to provoke such a sadly bewildered post followed by several days of silence? I'll just copy and paste sections from emails with good friends explaining the situation, rather than type it all up again.

"I just had some drama with being let down by a person who promised to do a certain thing... my "adopted" (sorta related by marriage) uncle offered to send me money every month for these two medicines to help with my fibro and said he would be my med provider for life, but today I got an email saying that he got back together with a long distance girlfriend so he will be using his money for that instead. He was all up in arms because he had contacted me saying "hey, my girlfriend called and we got back together, so I want to split the money between you guys alternating months". I told him that the meds are a consistent thing, and it's gotta be all or nothing. I even floated the idea of his girlfriend coming to visit him.. you know, since he had already promised to help me. But then he responded with affrontery, saying that he was uncomfortable or hurt or something because it felt like I was making him choose between her or me. Um, hello?! You put me in that position!! So now he's written me off, choosing the girlfriend.

I just feel... abandoned. Disappointed. Like some hope for getting better has been taken away after I dared to get my hopes up... You know we can't afford the meds on our own. There are no generics for either of them, and the copay is high. So that's what's going on. It just brings up a bunch of stuff with trust and abandonment issues, you know? Especially because he literally said, "I choose D. See you later." Ouch.

He had said all of this "I love you so much, you're my favorite niece, you light up my life, I'm so happy to be helping you out", etc. And now I don't know if I can believe any of it... because the moment that things got uncomfortable him (by his own fault, he shouldn't have promised if he couldn't make good on it... or if he was just going to take it back) he dropped me like a hot potato. Where's the love now?

I guess what makes me the angriest is that I never asked for this. He offered, from the beginning. He pushed the issue. I accepted his help a little uncomfortably, because it's hard for me to accept help.. and I even told him this. I was very honest about my guilt with receiving help from people, especially when money is involved. And now my past has been validated. Again. Accepting help from people just gets you screwed over and hurt. (I know, intellectually and from the work I've done and the books I've read that it's not true but... it has been proven so true in my life, it's hard not to believe it.)

So yeah. I trusted an older male, not exactly a father figure, and I was hurt and abandoned. Again. And I accepted help, against all my inner precautions against it... and I was dropped and left behind. I don't think that any of this was through any fault of my own, but then it never is, is it?

Bleh."

J responded with, "Ugh this makes me so angry too..

I'm sorry. No, you didn't deserve this. At all. I don't know him at all or any circumstances, but he sounds like a jerk. At any rate, he sure treated you harshly and thoughtlessly. Perhaps he somehow really doesn't understand what a big deal his offer was? I dunno. I don't want to defend him. (Well, I kinda do because it's so hard to imagine someone being so unkind to you!) 

He had no business to make an offer like that and then take it back for such a DUMB reason! Seriously. Dumb. What kind of girlfriend is this, anyways, that he has to send her money?!?"

"He's not sending her money, he's going to visit her because it's a long-distance relationship. I suggested that maybe she could come to visit him, and that's when I got the "break up" email LOL.

I dunno if he's a jerk, per se... he has cerebral palsy, so I don't think his social skills are exactly up to par. But he had been going on several times about how happy he was to be helping me, and about how he had been wanting to help someone for a while but no one would let him or he couldn't find someone or something, but now he could help me and he was so happy about it. And now... this.

C said that he didn't think he was too stable to begin with. I guess not. He's kinda gone back and forth on the thing a little the past few weeks before this. I just didn't really see it, because I was a lot closer to the situation... and so hopeful.

I don't think he did understand what a big deal his offer was... though I was very honest with him about how hard it was for me accept help. He shoulda got it.

Thanks for standing up for me :) It makes me feel good to know you've got my back. I posted a facebook status in the midst of my anger and hurt yesterday that said "I'm broken. I'm done, and I don't care anymore.", and I got three private messages and a bunch of affirming, sympathetic, and supportive comments. One of my friends, after learning what happened, offered to send me some money to help with the med costs. I thanked her but turned her down, because it's a monthly thing you know. But I do feel super affirmed and supported."

After responding to the "break up" email, he responded with an apologetic letter and later pled for me to give him another chance to try to make this work. I turned him down, because now I see that I can't rely on him to be stable or consistent. As J pointed out in another correspondence, I shouldn't doubt his sincerity, just his ability to follow through on this. So we're still "friends", or uncle and niece, or whatever, but... it has still taken a toll on me, even though it got straightened out.

I've mentally worked through this, but my emotions have been kinda haywire since, and I've been very restless and almost jittery. The past two days I overdid it by far with cleaning and organizing, but it was like I had/have this pathological need to just stay busy and keep doing, doing, doing. It's not the Should Monster, as M made that distinction, but it's more of a driving need to just... I dunno. Not be helpless? To do something? To be in control of a measure of my life again? Regardless, I felt the effects of overdoing it today with a very low level of spoons and some other unpleasant symptoms that cropped up after I accidentally used up all of my energy this morning. 

On the bright side, I did my makeup today (eye shadow, liner, mascara, lipstick, the whole nine yards!) and I looked hot, especially now that I'm a redhead :) (Doing the makeup is part of what took up so much energy, especially because I also showered, and I had to stand for both of these activities.) While I was in the parking lot of the library today, a stranger doubled back to talk to me, and told me that he hoped I didn't think him presumptuous but that I was beautiful. (He also said he had a thing for redheads lol) It really made me smile, especially because I was on the cusp of throwing up, so I didn't feel all that beautiful at the moment! So I smiled at him and wished him a great day. It was nice. Very nice. Especially because I've been a bit insecure about my appearance lately, having put on weight. It's hard when you go from being quite skinny to chunkier, because you've got that image of what you looked like before that you're comparing yourself to. It's hard for me to see past that and look at myself objectively to realize that I am, indeed, attractive... even with a thicker waist. On the bright side, my bosom has also increased, and C is a boob man, so that works out well.

C assures me that I'm still sexually attractive, and I'm glad for that. It's about time for me to hit the hay, so maybe I'll go see if I can get him to prove it...

This weekend I worked the information booth at a gun show. I was determined to put in all of the hours, both days, no matter how crappy I felt/would feel... and I did. I earned enough money to knock out several of my bills, which makes the financial burden lighter for my beloved.

I told him that I was doing it for him, and he corrected me with, "No, you're doing it to pay your bills and be a responsible lady." I corrected him and said that I already know how to be responsible-- I've been making ends meet and paying bills for years! I'm doing this for him, because he is the one that most of the bills fall to, and I want to lighten his load. I don't think he had thought of it in that way.

Still wrestling with the depression that comes with this awful pain, though now that my menstrual cycle is about to restart I think things will get better. I've been craving affirmation and trying to extract it from C, but it's like trying to get water from a stone. Spontaneous words of affirmation are not his strong point. (Understatement.) He is the type that will offer a few well-placed words to go along with an accomplishment, but he's not the cheerleader type. That's my area. He is the steady, solid rock that I can rest upon, but I have to remember that this solid rock isn't also a sparkly crystal cavern of delight. Weird analogy, I know, but it's the best I've got right now.

Anyway... just pushing through, one day at a time. I really want to get my house into shape, and I'm working on it one task at a time, but I find that I need some help again, probably... if I want to get any deep cleaning done, anyway.

I may be able to get my computer fixed for free. How I would love that... booting up C's big old computer is a pain, so I don't do it often. Plus sitting upright in his chair tends to increase my pain. I don't know what it is about this chair. But I do have my smartphone, which is proving to be a great boon. I found a game that distracts me for hours at a time. It's called Plague, and the objective is to cultivate and spread your plague to wipe out all of humanity. It's really a ton of fun, and requires strategy, which is something that I am weak on and want to improve. I also found a really neat fibro-tracking app that I can record my pain levels, symptoms, med dosages and times, etc. It's a great tool.

I shared my concerns with C last night. He told me not to worry about money. That is his job. lol.

We did talk it out, though, and he assured me that we are not going to lose the house. The worst thing that will happen is that the hospital bills go to a collection agency and we continue to pay off what we owe. Oh. Well, that's not that scary... And he's not worried about my costing him so much money. We'll figure it out, and it'll be okay. We'll be okay.

Also, he has been talking to guys at work about phone plans, and he has found some other options that are much less expensive than the numbers the Verizon guy was throwing at us. That is relieving. We'll probably end up going one of those routes.

As J said, I'm glad he takes such good care of me.

I'm scared.

I spoke with the hospital today to set up a payment plan to pay off my debts with them, but they can only give us 6 months out to pay it off, so that makes the monthly payment over one hundred dollars. It's going to be even more after I go in for the EEG and MRI next week... it almost makes me not want to go. Really.

C keeps saying we'll be okay, and that we're going to make it. I know he's right, but I'm still... scared. I don't know how we're going to do this. We're already stretched so tight just covering basic expenses. How are we going to pull this off?

It's times like this when the thought of slipping quietly into death is so very appealing, times when uncertainty and fear are overwhelming and when it has been a long day (or days) full of grueling pain. I begin to wonder... is it worth it?

I love my life, and I love my husband, so very much, but... it feels like he'd be better off without me around.

I'll be telling him all this (probably amidst tears) when he gets home, and he'll reassure me and work out the numbers and we'll be okay, but right now... right now I'm hurting so much, and I'm scared that we're going to go belly up and maybe lose our house or something. At least we have several months before C has to start paying more for health insurance.

What are we gonna do?

Yesterday was the Women's Empowerment Conference that the HJ hosted. We had a lot of help to make it a reality in the first place. For instance, a law firm sponsored us and gave us the money to hire caterers to provide a free continental breakfast and a lunch to all of the women and vendors present. That's nothing to sneeze at, for the total head count was somewhere around 100, way beyond my expectations! I helped to run the registration table by the front door, then I sat at the HJ's booth. There were lots of flyers and information on our table, as well as those silicon bracelets that everyone likes so much, and there was also one of those informational tri-fold cardboard things, but it was very hastily put together for this event. E gratefully accepted my inquiry of making another one for us. I know I can do a great job, and it's important that our information be displayed attractively. Presentation is a large part in what draws people in. (That's why it bothered me so much that some of the books we had to sell in the summer programs were clearly outdated and very unappealing. It made them much harder to sell, and even believing what was in the books already I had a hard time reading them and taking them seriously.)

I didn't stay for the whole day, leaving after the keynote/lunch speaker, but I enjoyed what I was there for. I was there for the majority of the day, and it wiped me out! I did get a free chair massage from the massage therapist who was there, which helped my back pain for a little while. I was definitely glad I had brought my stick and a large quantity of pain killers, though. I can't wait to debrief about the conference on Tuesday at our HJ meeting. I am certain that it will be an event that will continue for many years. I'm so happy that we're becoming a presence in our community with annual events! There's the talent show, for one, and now this Conference. I love being a part of something that makes a difference in people's lives. I really do. I feel very fortunate that I have both the opportunity and the skill set to be a valuable part of the HJ.

I was very tired afterward, though. I came home and napped, then C and I went out to run errands, but I was in bed and asleep before ten last night. We went to the Verizon store and priced phone plans for when I switch over to his plan. It is so expensive! C and I went through the budget item by item yesterday, and I'm discouraged, frankly. I mean, I know we'll be okay, but... I feel guilty for being such an expense to him. It's not like he didn't know it when he married me, but I wish that I had ways to ease his financial burden. If I could work, that would be one thing, but not only am I not able to really work, I bring medical bills and expensive food bills on top of all that! If I could live on rice and beans I would, but I cannot digest beans (or most proteins, really) well and it causes me more problems. After taking out all of the necessities like bills, we have just above a hundred dollars to buy gas and anything else we need. I told him that I will buy my own gas, and not to worry about it. I can manage that much with my paycheck. I'm still trying to pay down my credit card, but it's a very slow process. E and I were talking about increasing my hours this summer, and I'd like to, if just for the sake of finances. (More than that, though, I savor the feeling of making a valuable, viable contribution to something other than myself.)

I was racking my brain, trying to figure out where I can cut expenses to help, but I can't come up with anything. Even when it comes to food, as expensive as it is, I buy only the basics. Fruit, veggies, sometimes chicken, cheese, or fish, rice from time to time, yogurt (though I'm cutting that out for other reasons), rice milk and cereal, oatmeal, applesauce... That's it. My big splurges come in the form of, "Omg, can I have raspberries this week?!" And I know that C's not upset with me for any of this, but I almost expect him to be. Weird, huh? I know where it comes from, at least partially, though, and C's called it on more than one occasion. When I'm fretting about costing him money, he says, "I'm not R, and you're not your mom." It's true. R gets very worked up about spending money, and Mom is not good at not spending it. I do not nonchalantly spend money on things that are not necessities, though from time to time I feel an insatiable urge to spend money on myself in a way that is not necessity-related, like buying a dress from Goodwill or a new bottle of nail polish or a new piece of jewelry from WalMart or Etsy or something. I do, but it always comes out of my own money, what little that is, and I invariably feel the pressure afterwards that I could have spent it on something more productive... but the pleasure in my purchase overcomes the guilt. Usually.

It blew me away the first time C made that comment about R and mom, but I immediately saw the truth of it. And you know what? I'm actually glad they're getting divorced. They have put much work into their relationship and into the family, but it's still very dysfunctional, and it's better for everyone involved if they go their separate ways. I think everyone will be happier eventually, even if they aren't at first. The kids are going to have to get used to living within much tighter means, and while it may be difficult for them it will be a valuable lesson. R is a good person, as evidenced by the fact that he's buying the family a place to live and will be giving them money for a pre-determined period of time. That blows me away. I mean, when you're divorcing someone... usually you don't volunteer to give them money after you're split up. I never had any doubts about him being a good man, but he needs to get his PTSD under control. He's also very moody, which I could never handle. One of the things that draws me to C so much is his stability in nearly every area. R is stable financially, to be sure, but his moods are so subject to change... I always checked with mom to see what kind of mood he was in before I called to talk about money with him. Mom has her own mood swings, but maybe I'm more used to those since I grew up with them. I don't know how to explain her, exactly... I mean, she's generally always upbeat, in the same way that people say I'm always happy, but she can go "manic" and be swept away in some idea of hers on a moment's notice. A trip to the store is never just a trip to the store. You may end up 3 other places before you finally make it there, which always wore me out and made me impatient. (Realizing now that it was probably my lower-than-normal energy levels contributing to that without my realizing it-- not enough spoons!) I mean, I love adventure as much as the next person, but I just want to get my errands done and then decide if I feel up to anything else. I suppose that's the fibro talking. I do cherish the memories of her coming home from work and announcing that we were going to San Diego that weekend. I dunno. I'm ambivalent about it.

There's so much more to the situation, but I'm pretty much just staying out of it. They're adults. They need to work it out on their own. There's a situation that Mom is involved in that I am uncomfortable with and disagree with, but I've made my feelings known and now I just have to let it go. I still love her to pieces, but I'm not her caretaker. It is strange for me to keep my hands off emotionally, but it's taken a lot of work for me to be healthy enough to do that. She's my mother, not the other way around, and though I spent much of my life trying to take care of her... that's not my job. It's not my place. So she knows how I feel and why, and I'm letting it drop. She needs to work things out on her own. (I do kinda feel like a parent watching their child make mistakes, though... it's hard.)

I am sad about not being able to visit for Christmas this year, but Mom has said something about her possibly being able to visit me sometime this year or next, so that's very exciting. I would love to have her here. I told her that she'll be so proud of me when she sees my little house and the life C and I have built, but she said that she's already so very proud of me. Warm fuzzies!

I was telling C about our conversation, and how Mom used to be afraid that being with him would hold me back, "live a small life", because she has always felt that I'm destined for great things. Now, as we're discussing the stability and love that C has brought into my life, we both agree that he's the solid foundation that has and will allow me to grow into my full potential. The analogy was that he's the soil that will let me bloom. When I told C that, we started this joke about how he's dirt to me and how that would sound if we said it around others. So now, as a term of endearment, I shout at him, "You're dirt to me!" It's pretty funny :)

This may or may not be coherent. Fortunately, I only write for myself, so I know I'll understand me. That's a relief.

I want to preface this with the acknowledgment that I am a warrior, and a damn good one. I fight battles that many people will never, ever have to face in their life. I stare down intense chronic pain on a daily basis, and I win. Every day. I know I'm a fighter, and I know that I'm loved and cherished beyond belief. I also know that it's all going to be okay.

That being said, I will now proceed to lay bare my fears, vulnerabilities, and anger.

I spent a good portion of my evening and night in the emergency room last night. On Sunday, I spent an hour in the heat and that set off a migraine that was still super severe 24 hours later, and I couldn't get it under control with my pain meds I had at home. On top of that, I was having full body pain and fever and the damn twitchies were back, which exacerbated the pain. I could not handle it any longer, so I went in for help with the migraine and for pain control. (I was afraid of overdosing on acetaminophen with the current route that I was on.) I ended up sitting, waiting for a bed, for hours... twitching the whole while. It was kinda funny. What wasn't funny is that for the last hour or two I was in tears from the pain, weeping openly at a couple of points... but there was nothing they could do to help me until a bed opened up. Once they got me in, I saw a doctor and was injected with pain meds within the hour. I also got a referral to a neurologist, which is in the works.

The thing is, as relieved as I am to have gotten some help, it comes entangled with a whole host of other problems. Money problems. Health problems. Family problems. The implications of all of those.

I'm stressed, y'all.

1. Money- basic living expenses
2. Money- J's wedding
3. Money- medical bills
3a. Money/Health- prescription costs
4. Health- sickness, current and progressive
4a. Health- new symptoms
5. Health- diagnoses, current and possible
6. Health- pain control
7. Disability- to file or not?
8. Food stamps- do I qualify now?
9. Family- Mom and R divorcing

Can you tell I'm worried about money? lol. We're literally barely making ends meet. Stuff keeps breaking, like C's truck (or his battery), and we were already strapped because of the house and moving and all. Then we got the news that Mom and R are divorcing, and while I'm supportive of the decision, it means that my going on C's insurance a year earlier than planned is going to take $300 a month out of his paycheck. Oy. Not to mention that I have to get on his phone plan and his car insurance as well... Plus the added bills that living in an actual home means... C had it planned out well, but life happens, you know? Excrement transpires.

It's not that I'm worried, because I know we'll be okay, and worrying doesn't put money in your pocket, but it's just that... I guess I feel really badly because I'm the cause of a lot of these hikes in expenditures. I know that my medical bills are high. I know that it costs a lot to feed me. I know all this. I can't change it, but I know it... and it's awful. We've both cut out any unnecessary expenditures in our lives, but we're still just... barely making it. I've been trying to think of other things I can do to cut down expenses, like maybe buying less food, but I only get the basics, so... it's just expensive, not being able to buy the boxed and canned stuff. I feel helpless to make any meaningful, positive change to our situation.

And here's the kicker-- I wouldn't worry about it so much if we weren't also trying to save up several hundred dollars to make it up north in a month. I thought we could do it. I really did. And we could, if shit would stop breaking down! All of the several hundred that we'd allotted for the trip has gone to fix C's truck... the very thing that we need to have running to make the trip. Go figure. I'm tormented about this. I want to make the trip so bad, and I promised J that we would, even if we have to put it on my credit card, but I'm not sure I even have enough on my credit limit for that. Since R and Mom split, C has had to take over sole financial responsibility for my med bills. R gave me one last $80, but I've already had to put several prescriptions and copays on my credit card. I feel like I'm up a creek without a paddle here, and headed for a waterfall.

A lot of my torment is my promise to J (why, oh why did I make a promise?!), but I also really, really want to go back home again, if just for a visit. It won't be the same without D, of course, but I miss it so very badly... and I want to show C off. I want to show off the place to C, and C to everyone up there! lol.

I'm also still struggling with a loss of identity in several ways. Having this bad flare/migraine brought on by the heat shows me that I am, indeed, very heat sensitive now and can't afford to be out in it for long. That means that my dream of hiking the Grand Canyon rim to rim, or at least to the bottom and back up, may very well be beyond the realm of possibility.

Damnit! Can't I have just one dream that doesn't get snatched away by my stupid health problems?! I don't even know if I can have kids, I can't hike anymore, I can't hold a job, I can barely drive myself around right now, I can't keep a spotless house... what is there left for me to do? I still sing, but you can only sing to yourself for so long before you go crazy. I write, clearly. I read, when I can. (Funny-- I took a book with me to the ER to pass the time, but then found I couldn't read because of the migraine! Hah.)

It's not that I don't love my life, because I do. I love my husband, and I am blown away by his commitment to take care of me. It flabbergasts me. I just hate the position that I put him in, having to work 7 days in a row because of the overtime he's taking to try to make it all work... and I feel like I can't contribute a thing.

That's not true. I'm going to work tomorrow, no matter how terrible I feel, because I need the money to buy groceries. C can't afford food until he gets paid. I think he had $7 when we last looked at it a few days ago. I'm glad that I have a boss that is understanding, because she also kicks ass with an autoimmune condition and intense chronic pain. We are quite the team, us two cripples. LOL.

I've taken enough pain killers to put down a small mammal, and I'm still at the place where I'd like to take more, because it's enough to make me squirm. I'm used to dealing with a lot of pain, but this is... ridiculous. At least I don't have the migraine as well. Just a shadow of a headache.

So I am grateful. But there are a lot of battles for me to fight, and I'm tired right alongside my grateful. I'd like to catch a financial break. I'd like to go to Id. I'd like to be cured. (I think.) I'd like it if my hobbies and dreams didn't keep getting crushed. I'd like a pain killer that actually does what it's supposed to do. I'd like cookies. I'd like a puppy to snuggle with. And while we're at it? I'd like temperate weather that I can enjoy without dying one way or another.

Well, drama averted, for the most part.

What had happened was that I was informed that I could not get on C's insurance because more than 31 days had passed since we got married. This is such a huge deal because I am getting kicked off of R's insurance once he and Mom are divorced, so I thought that I was left stranded with no insurance at all. Needless to say, I was slightly devastated.

C and I headed back down to human resources the next morning, though, and discovered that I CAN get on his insurance because I'm losing my previous coverage! I just have to wait until my other coverage is lost, so there may be a lapse of a day or two, but that's it. Relief is an understatement.

I've been dealing with the twitchies again, the ones that landed me in the ER last week, so that means that I've had to stop taking the only other med I was on for fibro. I'm hoping that I can stay stabilized until my doc's appointment in two weeks. The meds that I'm on to deal with the twitchies make me so tired and drugged, though, it's unreal. I don't like it, because I just can't not sleep, but I have to remind myself that it is just another aspect of my battle. It's just temporary, anyway. Just 4 more days of this stuff... I had this idea earlier that I was going to make coffee and then get some stuff done, like dishes and then mopping the floors (today is a SUPER low pain day!), but then I slept for several hours instead. Oops. lol.

I'm not taking my last dose of that stuff (three times a day. Three.) until bedtime, so that way I can be awake to spend time with C, unlike when I was sleeping off that Valium for days.

He's trying to figure out how to make our trip up north work, financially. His car battery died the other day, forcing him to spend another hundred dollars on a new one. That, combined with the fuel pump going out, has taken all of the money he had thought we could put towards our trip. I told J that we're coming no matter what, even if I have to put it all on my credit card, but I wonder... do I have enough room on my credit card? lol. It'll work out. It has to.

I'm stressed 'cause I'm depressed... or is it that I'm depressed because I'm stressed? Or maybe I'm both stressed and depressed for a different reason entirely? Well, I suppose it doesn't really matter... the reality of the two things is enough.

The day started off well enough. I got my hair cut, finishing out the transformation. That made me giddy, especially because I quite like how it turned out.

The purple is for fibromyalgia/lupus/abuse awareness, and the red is because it looked more awesome than teal on the swatches. Teal would have been pretty sweet, though. Next time.

While chopping bell peppers for my salad at lunchtime, I suddenly flashed back to a memory of D involving bell peppers, and I just lost it. I cried for a good 5 minutes, overcome with grief. Then I was okay, but still sad.

I worked today, very hard. I like work. It makes me feel like a useful, contributing member of society... like I can actually still do something, you know? And my boss values my work very much. She considers me invaluable, actually. I know I will never be replaced unless I should actually choose to leave. But now I am tired... more tired than is reasonable for the amount and type of work that I did, and that's... frustrating.

I stopped by the bank on the way home and started the process of trying to get a personal loan, which is terrifying because I will have to pay it back and I don't have that kind of money... but I have to get this car thing taken care of. There is no postponement option. I hate being in debt. Hate, hate, hate it! And I feel like I'm in so much debt... That stupid credit card that has saved my butt so many times... I'm trying desperately to pay it off, throwing everything I have at it, but it still doesn't go away. It pisses me off that I'm in this situation, honestly.

And then I called R to see if he was comfortable co-signing the loan (he's not, which is fine), and we ended up in a conversation about the stress and troubles of life back home. Without going into details... it's troubling to me. I know that's their thing, and there's nothing I can or should do, but I still just want to see everyone happy and healthy, and right now that's not the case.

So it's the end of the day, and I have work I could be working on, but I'm all worked out. I'm tired, and I hurt, and my painkillers are barely taking the edge off, and I'm nauseous, and my guts are cramping, and it's been this way all day... and the day before... and the days before that... and I'm just getting really sick and tired of being sick and tired all the damn time. It gets so old, so fast.

I want to move as many of the smaller things to the new house as I can tomorrow, and put the boxes and stuff already there in their appropriate rooms (most of which I've already done, but the last few loads were just dumped in the living room), but... I can't do it by myself. I know that I will just make myself very, very sick, and I can't afford to do that. I asked a friend to help me, but she can't tomorrow, so I don't know what to do. It's frustrating to have a job that needs to be done that I could have done in the past, but now I'm helpless. It pisses me off, frankly. And it depresses me. I just want to sit down in the middle of the floor and cry. Tears of frustration, anger, and sadness. Like a little kid who needs a nap. I need the world's longest nap, and I need to wake up from the nap all better.

I seriously considered telling R today that I'm not going to doctors anymore, that I'm getting off of my medicines and whatever happens, happens. I am so tired of being a financial burden to him, like an anchor around his neck. I never wanted this... I may still make that decision. Like, after this run of acupuncture is done, I don't want to ask R to do it again. It's thousands of dollars for the long-term treatment plan, and I can't do it. I can't bring myself to do it. I just can't do this anymore...

No more doctors. No more medicines. Just me, curled up in bed, hoping to make it through another day with my sanity intact.

My life is fucked.

I'm sorry. I told you I was feeling stressed and depressed. I have no "it'll all be okay" optimism left in me right now, and I can't fake any of those inspirational life lessons. I got nothin'.

What did I do to ever deserve this? I must have been a kitten killer in another life. They say karma's a bitch, but I really wish she'd tell me what I did wrong before she slaps me. I probably killed kittens with other kittens, and then killed those kittens with rainbows that I turned into drugs to sell to children.

I just really don't want to do this anymore. I could use some of those kitten-killing rainbow drugs, honestly...

Alright. I'm done bitching. 'Cause believe me... I could go on and on and on...

Packing for the honeymoon! ^_^

C came up with the idea to create and install footrests on my walker, so that if/when I get too fatigued to walk around anymore at our destinations, I can sit on the seat and he'll push me around. He's also the one that reminded me to bring a pillow to sit on. That man takes such good care of me! (Also, side note: apparently adult strollers are a thing. C joked about it, I googled it, and sure enough... they're basically wheelchairs with more framing and some straps.)

Got a new prescription for an increased amount of painkillers today, which relieves my fear of running out of painkillers on the honeymoon. I had to go in and talk to the receptionist to make it happen, but that's a very small price to pay.

I wired "my portion" of the house funds (the money given to me by others and accumulated in my bank account) into C's escrow account this morning. The lady that "helped" us was singularly unhelpful and frustrating, but we got it done anyway. This means that we have enough to cover our end of closing costs. Hallelujah! We're getting a house! And such a neat little house it is, too... Maybe I'm just biased, because it's my first house.

The guys are moving a new couch set into the apartment right now, except it's a giant sectional and too big for the front door's sharp angle into the house... so they are having to walk it all the way around the apartment complex and take it in through the porch's sliding glass door. Poor guys. But it's a nice couch, and we're getting it for free from one of the guys' parents, so SCORE! It'll do nicely in our new home.

I started growing my hair out over a year ago as a challenge to myself, because it hadn't been long in so very long. Then, when I got engaged, I knew for certain that I wanted long hair on my wedding day. Well, the thing is that when I do the same thing for lengths of time, I get antsy. The same goes for my hairstyle. It hadn't really changed in over a year, except to get longer and get trimmed and such. As the wedding approached, I found myself wanting to do something new, something different. I (barely) forced myself to wait until after the wedding, but now...

...a brunette bob! J says I look tired in this pic, and I probably do, but I thought I looked pretty good! :) Considering the flare I've been in, I look better here than I have since the wedding day.

Anyway, off to pack some more. I got to rest a bit while writing this, so it's back to the grindstone I go.

I get moody on the weekends. Kinda cranky, kinda irritable, kinda way more introverted than usual...

...and I think a lot of it has to do with "Nerd Night".

It's not the fact that all these people come over and hang out and play games. That's not it at all. In fact, I rather like the idea of having a weekly game night. It's cool.

I just find myself increasingly frustrated by the purposelessness and lack of productivity that characterize the people that end up hanging out over the weekend.

Maybe it's just that I've always disliked weekends. Routine goes down the drain, and you never really know if it's going to be a good day or a bad one... at least, that's how it was growing up. The stability of school/work is gone, and time stretches endless and unstructured before you. Meals may or may not happen. I may or may not be locked in my room. We may or may not go to church. G may or may not be in a crappy mood. Mom may or may not be happy.

The days were just... blah. Empty. Purposeless. Threatening.

And it's different, when you work hard during the week and then on your days off you want to just chill, like C does, or his brother D. But even then, they aren't just constant vegetables, you know? They do stuff, they read things, they learn, they discuss...

S and his friends... when they're over here, they watch stupid, mindless shows/cartoons or play video games. They sit. Or they go to the store for more soda. That's pretty much it.

And I hate, hate, hate coming out the morning after Nerd Night to find my house dirty, some person on the couch, and everyone just... sitting. All day. Dishes in the sink don't matter. The messed up living room doesn't matter (because as long as you're sitting in the mess, it doesn't exist, right?).

It's just so... unproductive. So pointless. I hate having all that in my space.

I just have to remind myself that it's not that much longer... and when we get our house, we won't have people staying over, lingering the whole weekend. Right now, it's S's friends, so I can't say anything... 'cause he lives here too.

But it's these pointless people... Dirtying my house. Eating my food. Disrupting my study time. Taking up my space. Stinking up the house with their smelly feet.

Can you tell I'm annoyed? I get this way.

It threatens my routine. It poisons my vibe. I don't like it.

Get the hell out of my house.

Go be pointless somewhere else.

Note: I talked to C about it when he got home... actually, I apologized in advance for being cranky, and he insisted that I tell him why I would be cranky. He says he understands and it's okay. He also pointed out that, while I'm okay with the idea of Nerd Night, I have a difficult time with the reality of it. He's right. I don't mind it in theory at all, I think it's a cool thing. However, it's the reality that accompanies it-- the loud noises late into the night, the dirtying of the house, the extra people, etc...

We didn't come to any conclusions about it, as in there were no offers made to change anything and I didn't demand any. When we're in our house, C will have a "man cave" where they'll be playing. It'll be a different situation entirely, and I know this... so I can deal with these annoyances now. It's really not worth making a big deal about, especially because it's partially just how S chooses to live his life. I can't be like, "I don't like your life; knock it off!"

Anyway, it just felt good to express my frustrations, to be heard and understood, and for it to be okay that I was annoyed without any negative repercussions.

I did, however, make it a point to ask C last night if they could have Nerd Night somewhere else next week, as it will be the weekend before both of my finals on Monday, and I MUST have that time to study and sleep.

Note within the note: C has begun voluntarily including me in his finances, so I know where his bank accounts are at and how much he can expect to be pulling in the next month or so, how much he'll be paying in bills, and just about when he'll be ready to get the ball rolling. Just a couple more paychecks...! Anyway, it makes me feel good that he's including me in that; it puts me at ease, and I feel trusted. Since he's mostly supporting me now, it probably feels more like we've got the "joint finance" thing going on than before.