So after 2+ years of being on gabapentin ("Neurontin"), which is a psychoactive drug used to treat epilepsy and neuropathic pain, I finally decided that I wanted off. I mean, my dose had been increased several times throughout the years with still no help for the pain and too many negative side effects for me to want to take it any longer, especially if there are no benefits to outweigh the risks or negatives.

I tapered down after telling my neon pain doc that I wanted off, which she instructed me on how to do, but I was already not doing well because I had yet another instance where I was forced off of pain meds for a few days. It was a crappy week +, but then the night that I took my last dose I started feeling really, really awful. I thought it was just a bad bout of "fibro flu" at first, but as my symptoms continued to worsen and I was the sickest I could remember being in recent memory, even worse than when I had just been going through pain killer withdrawals. I told Drogo the second night when he got home from work how awful I was feeling, and how it just felt like really bad withdrawals and… then I kind of got an idea. I did some research online real quick (thinking that it may have been something to do with seratonin toxicity, which can be SO dangerous), but the only real change had been quitting gabapentin. My symptoms lined up perfectly, and I thought that I might be able to persevere at home now that I knew what I was up against. You know what I mean? It's just easier to fight a known enemy, even though I still felt increasingly worse. (And really? Going off of this med with no warning whatsoever that withdrawal symptoms were coming, much less that they'd be so virulent?! It was a very nasty surprise… but in retrospect, I should have totally seen it coming. Oh well.)

I had a doctor's appointment with my GP the next morning, and she was concerned. She wanted me to go to the ER for monitoring just because of the severity and concern connected with many of the symptoms, most importantly bad chest pain and very low (for me) blood pressure with severe and consistent near syncope upon movement. (I actually collapsed/passed out in front of CVS right after the appointment, but Drogo was there to catch me and lower me to the ground. I really gotta stop collapsing in pharmacies.

We decided not to take me into the Emergency Room because, even though insurance covers a lot of the expenses… the hospital is NOT a cheap place, not by any stretch of the imagination. Khal Drogo was stuck in a hard place, seeing me so sick and knowing that I really ought to go in, but looking at the long-term of our financial situation and just feeling that, well, we can't swing it. Ever watch Cinderella Man with Russell Crowe? He finds himself in similar situations as he struggles to feed, clothe, house, and keep his family healthy in the midst of the Depression. It was not easy to watch Drogo wrestle with the decision… it hurt me to watch him have to make such a terrible choice.

A few hours after my appointment, however, I was still worsening, and fast. I texted mom and RDad to tell them what was going on, mom called RDad, and Rdad called Drogo to tell him that finances weren't a concern. Get me to the hospital. The timing was great, because I had just texted Drogo from the bedroom saying that "I am getting worse, and I don't know how much more I can take." I broke down crying about that point, because while I deal with a great amount of pain on a regular basis I am also worn down from doing that for so long without any significant relief at all. The "regular" pain combined with the awful withdrawal symptoms and pain was just too much for me, and so on the 3rd day of withdrawals I ended up in the Emergency Room. I hadn't been able to eat hardly anything the past few days, and that morning I'd only had a small applesauce snack cup, so I started getting pretty ill from not being able to eat while in my ER room in the back. In addition to that, I wasn't allowed to take my own meds and so the time for pain killers came and went… and my pain (a 9.75 when I came in to begin with), skyrocketed. I finally fell apart after a few hours, especially after having to get up and move around for x-rays, and I started sobbing and wailing uncontrollably which lasted for an hour or two before I was given something that took the pain back down to manageable (about 9.5 again).

Yesterday was kind of a blur, but I know I was eventually admitted and I haven't broken down crying since. The pain has been bad, don't get me wrong, but below a 10, and I am okay with that!! LOL. During initial triage, the nurse that was trying to take my blood and put an IV in just wasn't doing a good job somehow. The tourniquet hurt like nobody's business, driving my already high pain up, and then she was digging around with the needle and tapping on it for over a minute before I told her to just use the other arm. I couldn't handle the tourniquet pain any longer. She hit a nerve (twice!) as she pulled out and I couldn't help but scream and start sobbing again. I actually blacked out for a split second because it hurt so badly. It startled me.

I've had some great nurses, though, and the doctor who saw me was good. Professional. Friendly, but genuine. He's keeping me overnight again, since I'm still so symptomatic and not doing well… sending me home would not be a good idea right now. I feel much safer and way more comfortable here, with regular medicine application, constant saline drip in my IV, nausea meds, and a type of synthetic opioid, methadone, that is actually used in detox programs for opioid addicts. My pain is still hanging out in the 8-9 level, but that's "normal" for me anyway, and my pain is being aggravated by all the other stuff so it's not a big surprise. I'm getting the methadone and tramadol, as well as IV solu-cortef, which is what's in the "stabby stabby" that I have to administer when I get into an accident or whatever to avoid adrenal crisis. It is more potent than the tablets I normally take, and I can feel it keeping my body more relaxed and stable. It's nice. I thin that was part of why I "collapsed" in the ER as well, because my adrenals were shorting out or whatever on top of everything else. I wasn't allowed to take my meds, remember? It was a nightmarish afternoon. I can legitimately say that I have not been in that much pain before in my life, except maybe in small, short bursts. I was waiting to pass out from the incredibly high pain levels and my utter fatigue (especially after sobbing uncontrollably for a prolonged period of time, and being so weak to begin with when I was brought in-- couldn't walk, could hardly sit up at all).

So… it's been a fun adventure. I feel awful, yes, but not as awful as I would if I had just tried to make it at home. I mean, I did try, and I made it as long as I could, but I just kept worsening instead of stabilizing or improving, and there's only so much a person can take, ya know? I'm so grateful for the intervention of Mom and Rdad on my behalf. I'm honestly and genuinely glad that I was admitted and that I'm being taken care of. This has actually done a fair deal toward improving my totally bleak perception of medical care here in my town, and in the hospital/ER in particular.

I haven't been able to sleep more than 2 or 3 hours since I've been here (or even the day before), and I keep waking myself up with dry heaving when I do manage to fall asleep, but I'm going to maintain a valiant effort to crash the heck out. I'm SO. TIRED. Hah.

Before I go tho, let me take a selfie… LOL. I figured I had to commemorate such a momentous event. Plus my hair looks freaking fantastic, rolling around in the hospital bed this whole time :D

How's my pain? It's over 9,000! LOL

Look! I'm a fall risk! First time for that… means I'm not allowed to stand up on my own.

A whole breakfast tray of… nothing I can eat. I learned how to order whatever "safe" food there was before my tray gets brought up pretty quick, and Drogo has been bringing me safe food from home so I can eat little bits when I'm hungry. Still can't eat much yet, abdominal cramps and nausea too bad.

But they gave me Sprite! Rock on, nurses.

Peace out, homies and fellow Spoonies. May your spoons be plentiful, and take care of yourselves, yeah? I'll stick to doing the same over here.

So today has been one of those good, lazy days. The gang came over for DnD last night, but I was far too tired to make it through more than the first few steps of the encounter. M put me into "Hammer Space", which is basically the "cartoon pocket" of the universe. So I was there, without actually being there, and the real me took off to go take a nap. M gave me one of her muscle relaxers from the accident, since I was hurting and stuff, and it really helped me to get to sleep. I've been having trouble sleeping the past few days from pain, so it was a relief to sack out for a while, and laying down no less! The past few nights have been spent propped up on the couch so I could drift off, since it hurt too much to breathe when I was lying down.

So I slept for several hours, woke up to eat something, went back to bed for several hours, woke up for a little while and had breakfast, then went down for a few more hours. I was awake for a few hours when I went to go take another nap with C, who hadn't climbed out of bed yet. I didn't actually get to sleep, but we did stay in bed for a while, which was nice. (My mood is greatly improved from yesterday, as C has proved that he is still a willing participant of marital privileges. It's been a great relief, I'll tell you that for sure.) Also, a big plus to sleeping in bed is that when C came to bed we were able to cuddle up together. I haven't gotten to sleep-cuddle with C in probably just as long as we've been abstinent, since I've either been in too much pain to touch, not in bed at the same time as him, or sleeping out on the couch. It is such a simple yet profound joy to briefly stir to consciousness and feel your love's warm arm draped over you and his feet entangled with yours. Words cannot describe it, but it's one of my favorite parts of being with C. Is that weird? I don't care. It makes me happy.

When we clambered out of bed we both hopped into the shower and then watched an episode of the show we're watching together. He wandered off to go play a game on the comp and I've been watching Netflix. I'm tired, though, and my tummy's a little upset, so I think I might brew up a mug of tea then crash for however long I end up sleeping. The "nice" thing about being disabled is that I don't have anything pressing to be up for in the morning and I can sleep whenever I'd like. (Well, whenever I can, as the case may be…) There's always a positive, right?

M brought a book over for me to read, and as weird as it is I find myself strangely fascinated with it and I've been reading it off and on throughout the past few days. It's set back in the ancient days of Egypt, but it totally references contemporary Biblical events of the time, which is cool.

I'm totally yawning my head off. Time to hit the hay for a while. I like lazy days… when they're spent with company. It gets kind of boring when you're all by yourself, day after day. I would know.

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...

Ren faire!!! Well, the little local one, anyway. My friend K devised an ingenious footrest/sling for the Chariot so that I was able to sit and be pushed around by C most of the time. Despite that, I am very much paying for my outing today, but you know what? I totally don't care! It was worth it.

It was so nice to get out of the house, and I'd hoarded pain pills against this day. I also didn't use them all, so I should (hopefully) have enough to get me through to my pain appointment tomorrow, but only just. I'm trying to spend most of the time in a drugged sleep, surfacing only long enough to pack and prepare for my appointment. I know I'm overdosing on stuff that I'm not supposed to be overdosing, but it's either that or stay awake with the pain and let it feed on itself… which means that it'll take more pills than I have to break the pain cycle. Sometimes, though, I get this nice little buzz, a cozy sort of warm fuzziness, off of the sleeping meds (depending on circumstances, how much I've taken, how much is still in my system, etc.) and it feels good. That in and of itself kind of scares me, but it's nice to feel something other than pain for a change. As of right now, I can feel the last batch I took (about half an hour ago) starting to kick in. My intense headache is being muffled, my eyes are getting kinda heavy, and I just feel a little… fuzzy. And slightly dizzy. But mostly fuzzy.

Want to see pictures of the foot sling? Check it out-- kickboxing wraps for the straps, a couple of carabiners, and a wire shelf that looks suspiciously like a baking rack.

Also, the urge struck me (and I had hours to kill while C was sleeping), so I took the time to do my makeup today. I have some eyeshadow tutorials on Pinterest that I used as an inspiration, since I pretty much have no idea what I'm doing, but I think it came out well. I just hate putting on makeup because it takes so much effort to take it off again! Wish I'd gotten a picture of me in garb as well, but I didn't think of it… so here's me in my pajamas! lol

I guess I'm just facing a bit of depression. Then again, I shouldn't be surprised, what with how much stress my body and mind were under this past week. I can probably expect to be worn down and worn out. That's normal, right?

So I'll just be… nice… to myself. Forget the expectations. Just exist, try to have fun, and rest. The toll on my body is probably the same as if I had been fighting a very bad illness for a week and now need to recuperate.

Sounds good.

It's hard not to be down about my situation, though. I'm pretty bummed about this crap body that I've got and the limitations it's put on me. I really just want to go hiking. *siiiiiiigh*

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.

I started work on Christmas presents the other day. I'm enjoying the chance to create something again, something that has meaning and purpose. It's better than just lying on the couch all day, moaning. Now I can lie on the couch, moan, and accomplish something all at the same time! lol

I did, however, overdo it a bit... again. Going to church yesterday morning was hard on my body, and I had to leave just as the sermon was starting because I was feeling very ill. A quick stop at the library to pick up some more movies for my sick seclusion confirmed that I was, indeed, pushing beyond the bounds of my endurance and I high-tailed it home.

I felt ok the rest of the day, so long as I was resting, but I got that "itch" towards evening and started crafting... which, of course, meant that I had to unpack and organize my still-in-transition craft room. I guess I got carried away, because although I could feel my body yelling at me that I was, again, beyond the bounds of my endurance, I kept going. I guess I was hoping that it was a false alarm. I mean, you can only get so sick before you kinda start doubting your body's warnings that it's going to get sicker. It's like an internal eye roll, like, "Really? Are you just pulling my leg?" I get very tired of pulling up short in life to keep myself from getting sick, and sometimes I wonder if it's all in my head and if I'd be able to just "get over it" if I powered through and kept going.

Well, this proved to me that I had better listen to my body, or ELSE. I had finished one project and was working on Mom's present when C got home, so I wrapped it up to spend a little time with him. I felt hungry for the first time all evening, so I chopped up a peach and munched on that. Big mistake. I spent the next hour and a half throwing up pretty much everything in my stomach. I don't even know if my evening meds got absorbed or not. In any event, I was utterly miserable. I finally went to bed after I was able to keep water down for a while, and half a mug of Sleepytime tea.

So today, I still feel completely nauseous, queasy, and kinda whole-body-bruised. I didn't sleep well, and I woke up tired and aching from the inside out. It feels like the flu, truly. A bad flu. And all this because I wanted to get my craft room into shape. Really? That's whack, man. I shouldn't be punished for trying to lead a productive life, but there you have it. At least I'm keeping some toast and applesauce down this morning. (Barely.)

Anyway, this was a good lesson. I suppose I'll be more likely to actually listen to my body and pull up short when I'm approaching my limits from now on... at least, as long as the memory of feeling awful is still vibrant in my mind.

C has had the past two days off, which has been nice. He's been working so much overtime lately, and I've been so drugged off and on, it seems like we've hardly gotten to see one another. Of course, we have our routine that works quite well, but getting to spend two whole days together was a real treat. On Friday, we ran errands. C's paycheck had finally hit the bank, so we paid off some of the bill from when his truck broke down, and then we bought groceries. It was a good thing he got paid when he did, because both of us were down to almost nothing in food, despite getting creative.

We took my car, since his truck didn't have gas yet and mine did. My car, Shenandoah, is also the only vehicle with a cd player or radio, but a song came on the radio that I HATE, so C suggested I put in a cd. I put in Queen's greatest hits, and as we drove along C was singing along with it, so I joined him. I swear, it was just like a movie or something. A young couple in love and having fun, driving along in the bright sunshine, singing with the radio to their favorite songs, enjoying one another and the day... it was truly, truly fun. It fed the part of my soul that thrives on spontaneity and joy.

Funny story that highlights my fibro fog... I took my walker with me into the store, as I've been in extreme pain of late. (But since I got back on the gabapentin, every day it's a little less, which is something to be truly grateful for.) C let me take over pushing the cart somewhere in the store, and it wasn't until the end-ish of our excursion that I felt overwhelmed by pain and fatigue and wanted to sit down on my walker... only to realize that I'd left it somewhere. I left my walker somewhere in the store. Hah! I found it easily enough, but I'm glad that I realized I'd left it before we checked out and went home. :) It was sitting forlornly near the root vegetables. Poor Bling Chariot.

After getting home, we watched some of the sci-fi show that we've begun watching through together. It's called Farscape, and it's from the late 90's, early 2000's. Despite being about 13 years old, it's really good and it makes me think a lot. It's also really funny. I'm really enjoying watching through this one with C, even more than the last anime we went through together. This is kind of a hobby that bonds the two of us; a couple's activity. C will choose a show he thinks I'll like, one that I haven't seen before, and we'll watch the whole thing together. The only time we haven't finished one is when we were going through Bleach, and that's because I got bored because it seemed repetitive to me.

After a while, the guys came over for DnD, and I hung out and read/played on the computer until I was ready for bed.

The next day, Saturday, was a truly lazy day that I enjoyed. I've been waking up early, like 6'ish, and moving to the couch to play on the internet/read/do stuff until C wakes up and goes to work. After that, I'll accomplish larger housework tasks, because I'm not afraid of waking him up. At any rate, C came out and joined me on the couch... sorta. We engaged in marital privileges a bit vigorously, but I didn't realize how few spoons I had, so I ended up using all of them on that one activity. C put in Farscape, and we proceeded to watch a good portion of the first season. I'm talking hours worth of the show, here. We paused it for regular bathroom and food breaks, and somewhere in the mid-afternoon we got dressed and went to the store in search of sea salt. They were out, but we walked over to the pet store and considered fish for C's tank and looked at the other animals. Upon arriving home, we ended up napping on the couch for several hours. C hadn't slept the night before and the heat really drained me, so we slept a long time. When I woke up I read for a while, and C was playing an online MMO with some of our friends who were online at the time, but then he came back out and we watched more Farscape until I was sleepy, which was about 1 am. We only have 6 episodes left in the first season, and we watched the bulk of the others yesterday.

It was a nice, easy, lazy day, and I really enjoyed spending the time with C. Some people think that watching a show together doesn't count as spending time together, because you're focused on something else, but the show actually stimulated some very interesting philosophical and anthropological discussions while we were watching. Also, we cuddled a lot, despite my being quite twitchy.

There is one thing that I must mention, and it is this: when we left to go grocery shopping on Friday, there was a package waiting in front of the door. I hadn't ordered anything, but my name was on it, so I opened it. It wasn't a bomb, but instead it was an entire case of Cassandra-safe cookies!!! Some mysterious benefactor ordered an entire case of the one store-bought cookie that I can eat, and had it sent to my house. I flipped out in a big way (in a good way), as I love surprises, and this is like... the ultimate surprise. Also, I was raised by my mother, whose primary love language is gifts, so to receive such a thoughtful gift, and as a surprise no less, reaches into my heart and tweaks every "feels" wire that I've got. I was jumping up and down and shouting and really just haywire with excitement, and I'm still so happy about it. It's not about the cookies, though they're delicious (and I'm having a hard time exercising self control!), but it's about the thoughtfulness and intention behind the cookies. An entire case. Man. Can you believe it? I'm stoked. And no, the mysterious benefactor has not revealed themselves as of yet. C and I both kind of thought it was M, but it wasn't. It is something like he would do, but I must look elsewhere for my secret gift giver.

Anyway, back to the regular week and C's regular routine. He has more overtime coming up, so we'll only get one day together as a day off, but that's okay. He's working so hard to keep us afloat, and I make sure to let him know how much I appreciate that, and him. He seems to like that :)

On C's advice, I took a super-dose of Tramadol last night. I could definitely feel it affecting me, but more importantly I could feel the pain draining away to super low levels. Then again, maybe not? The hard thing about being in such high amounts of pain is that it totally screws with your perception of pain in general. I can no longer really place my pain levels on a scale, though I do for the sake of understanding for those who aren't in my body, meaning everyone else. In any event, the pain levels are low to medium-low today compared to what I was going through recently, and that's enough to make me want to do the Macarena or something.

Although my balance and vision were screwy, and my stomach hurt until I drank some soothing tea, my pain was blessedly masked, and I fell asleep quickly. The pain is back today, but not at such high levels. It's getting worse as the day progresses, but I'll just super-dose myself again tonight if need be. I know that my poor body is very tired from the battle its been fighting just recently, so even though I feel "better" today and the temptation is to leap into action and get stuff done, I'm making a conscious choice to be kind to myself and to my body and just rest today. Get a few things done, sure, like laundry and arranging the flowers that D and R brought with them to C's barbecue... oh! C and I are taking a walk together when he gets home! I'm looking forward to that :) And I intend to shower today, as it's been a couple of days more than it should be since I last did more than just soak in a tub of hot water. That should pretty much do it for me. Most of the day, I'll be resting, because I want to be good to myself. I deserve it! Especially after the hell I just suffered through. There are only a few people in the world I would wish this kind of existence on, and they're people that have wronged me greatly.

J brought up an interesting point today in passing... Those around me, friends and such, feeling bad/sad because they're helpless to help me or alleviate my pain. It's got me thinking, really. I don't want to sugarcoat my life, especially here, because I need an outlet of some sort. In person, I do a pretty good job of smiling through the pain, but the internet is where I can bare my soul and find support and humor from fellow survivors. But should I really be so honest? Should I be more Stepford Wives and pretend that everything is fine?

Nah.

Here's what I think: Even though my pain may make those I love and who love me uncomfortable because there's not a damn thing either of us can do about it, I'd much rather they know because it is now a part of who I am and how I live my life. To hide a part of myself for the sake of reducing possible uncomfortable experiences would kind of negate the point of the friendship. I fake it with those I don't care to let very far into my life. Those that I let in, it's because I know that even if it hurts them to see me hurt, they will still treat me like a normal person. As much as I sometimes desire to be coddled and swaddled and waited upon hand and foot (though I think that's normal--hello, Mother's Day!), I so much more appreciate the real acknowledgment of my limits, expressions of compassion, and continual good humor that they put forth. So J, how to relate? Just keep being my friend. I'm sorry my pain makes you sad. It makes me sad, too. But just keep being my friend like you always have, and don't get upset when I'm too worn out to want to deal with people at the moment... even awesome people like you.

On another note of pain... D's memorial is this weekend. The closer it gets, the more I kinda don't want to go... because if I don't go, it's not real and it didn't happen, right? And if I don't deal with the pain, then it's not there, right? Right?

Ugh. I'm going to cry so very, very much. I'm dreading it, honestly. I don't want to face this grief. I want to pretend that D is still alive off in the far-flung land of Id, and I just haven't heard from him in a while (which is not uncommon at all), and this has all just been a big misunderstanding. That's what I want. I want D to still be alive. I don't want to attend a memorial service in a church that will be stuffed to the gills with people that I don't know who also loved him, or at least liked him, and I don't want to see his family or Gaga because the last time I saw them we were celebrating another year of life for D.

But on the other hand... I do want to see C and the girls. I know they understand this special brand of grief that comes from having shared a home with D. And finally, I will have someone to grieve with who knew D. I won't be alone in my pain, at least for a few days. There is that.

I have been on the couch all day, so sick.

I had two goals today, and I haven't accomplished a one of them. Well, I did make the bed earlier... but I'm still in my pajamas.

I've barely eaten due to the nausea, mostly just drinking water and peppermint tea.

I slept for a while, especially because I was very dizzy and lightheaded. Kept falling over when I tried to stand or walk, and standing made the nausea ten times worse. Not to mention that when I stand up and move, my muscles start up with the burning ache from fibro, plus the shakiness and weakness that made walking difficult. The dizziness is better now, but still there, and I still feel weak. The headache has settled back in as well. I don't think that getting up and unpacking a box is a good idea right now. I'm contemplating a shower, but even that seems kinda risky at this point...

I just hate letting C down by not getting a box unpacked... and also E. I told her I'd rock this grant, and I haven't finished it yet. Granted, she never gave me a timeline, but I always feel that I should complete a project as soon as possible. (Well, I guess I am, since the rest of the time I've been moving, packing, unpacking, or very sick, soooo...)

I don't know why I even bother making plans or setting goals. Stupid chronic illnesses always interfere and ruin things. Sometimes I can power through, but other times I simply cannot. I'm so done being a Spoonie! Can I have my normal life back now?

I'm going to try to get some yogurt down... if I can make it to the kitchen. In the last twelve hours I've  had a couple of bananas, an apple, and some applesauce at various, random intervals. Oh yeah, and I had some rice chips this morning. So it's probably good if I eat something more... solid.

(I'm hoping that I don't come down super sick when I go to work tomorrow... because if I go through there what I went through here when the dizziness/weakness/head problems hit, I will not be able to get myself home. It's a twenty minute drive, and I could barely make it to my bathroom and back, so... I'm a little worried about that.)