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.

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

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

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

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

What.

the.

fuck.

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

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

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

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

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

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

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

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

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

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

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

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

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

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...

I really need to be drifting off to la-la-land here in a few minutes, as I've got to get up early. Why? Becauuuuuuuse.... tomorrow is The Appointment with The Neurologists. You know, the one where we go over test results and I maybe get some answers?

I feel all sorts of ways about this appointment. On one hand, I know that even if all of the tests come back normal and show us absolutely nothing in the way of what's wrong with me, that means that we can rule things out, and that in and of itself is progress. On the other hand, I am both hoping and afraid that some of the tests will show something and we'll begin to have a clue as to what ails me. I'm hoping to maybe start getting headway in treating the root cause of this ridiculous pain (and all of the other fun stuff that comes with it). I'm hoping that the doctors will be able to get me some pain management (i.e. pain meds) that are more effective than what I've got now. I'm hoping for answers, clues, hints even. Anything.

But I also don't dare get my hopes up. (Despite my best efforts, I find myself hoping for things, but I keep telling myself to stop it!) I really hate it when my hope are crushed and I am devastated. I'm afraid that nothing conclusive will come of this, that I'll still be shrouded in mystery. I'm afraid that they will refuse to help me treat my pain. I'm afraid that I've got something terrible, something degenerative, something debilitating. I'm afraid that I'm only going to get worse. I'm afraid that there's nothing we can do to help me.

I mean, there are so many "what ifs". What if it's degenerative? What if the pain never goes away? What if I can't ever have kids? Hell... what if I'm dying? Some people might think that's being a bit dramatic, but considering how rapidly I've gone downhill, how bad it's gotten in such a short amount of time... it wouldn't surprise me as much as it might someone else. My mom even said this last trip that I looked like a chemotherapy patient-- pale, weak, dark circles all around my eyes from the pain and sleep problems... She also said that she fears this is the last time she's going to see me. I can't travel long distances anymore without great difficulty, and she doesn't have the money to come out my way, so... unless I get better, we won't be seeing each other for a long time.

Do you know how sobering and/or terrifying it is to have your mother look into your eyes and say, "I fear that this is the last time I'm going to see you"? Let me tell you, it's pretty damn scary. It made me take a hard look at myself through someone else's eyes and realize... yeah. I'm pretty sick. I've gotten good at denying how sick I am in my mind... maybe to justify myself to others, to avoid undue sympathy, to keep myself from plunging into a morass of despair? I'm like, "I'm fine yo! Um... Can you help me to the bathroom?" Hah.

Anyway, I need to rest. The less sleep I get, the harder this trip will be. C's dad is taking me, which is very nice of him. We'll be taking C's truck since it gets WAY better gas mileage than R's big old beast of a truck. (Funny... both of my dads are named R now. Go figure!) C will have to use R's truck, as my car is broken and in the shop. (We're going to have to get a new one. This has been about a year in coming, but it's still not a pleasant prospect. At least I hardly drive now, so all I need is a little beater to get me to work once or twice a week and to the store if I need it. No big. It just has to have proper hvac and be an automatic.)

I asked C to cuddle me tonight, and we talked over some of my fears. He told me it's okay to be nervous, and that I'm right in thinking about it as "no matter what happens, it'll be progress". Oh, guess what? I went to my grandparents this afternoon for a small Christmas (opening presents and watching a Christmas movie), and on the ride there Grampa and I were talking about stuff. C came up, as I was talking about how incredibly impressed I am with him as a person and how he's adapted to life with my illness and how well he takes care of me and loves on me. I mean, I knew he was a great guy before I married him, but he's really blown my expectations out of the water and shown himself to be a spectacular specimen of human being. Just an all around wonderful man and husband. Anyway, I was saying things like that and Grampa jumped in with the comment that he did have his doubts when we got married (C being a nonbeliever and all that), but C has really impressed him too and he thinks that my heart was really telling me the right thing when I decided to marry C. To hear that made my heart sing and burst with pride. I love that man. He's amazing. And he has the greatest mustache ever. Even Grampa is jealous! He said so himself during one of the 3 or 4 times he complimented C's mustache throughout the afternoon. Men and their facial hair, I swear...

I asked C to tell me some optimistic stuff about the future, to allay my nervousness and all. He looked at me, blankly amused (he's terrible at off the cuff stuff, especially optimistic or complimentary stuff), so I whispered a few prompts to him. "Tell me it's all going to be okay... and that no matter what happens you'll be here... and we're gonna be alright..." He then kinda stuttered out awkwardly, "I'll be here..." (long pause) "...for you." Then we both laughed because it was so awful. I'm grinning now even as I recount it. He's so funny.

Alright. To bed with me, while I still have a smile on my face. Hopefully I don't stew over the "what ifs" too much while drifting off to sleep. I'll try not to. But oh man.... so nervous!

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'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?

How do you accurately convey the ever-changing blend of, "I'm optimistic, I'm a fighter, I'm a warrior, and I'm not going to let circumstances out of my control get me down" and "I'm really tired of this and wish I didn't have this fight to fight anymore"?

Hurting today, from the moment I woke up. I'm not surprised, given that I was in the Urgent Care/ER for the better part of Thursday night and the wee hours of Friday morning for uncontrollable full body tremors/spasms. They think it was a rare reaction to the gabapentin, but don't really know. All I know is that they pumped me full of Valium (twice!) and I spent the next 24 hours drugged and woozy. My muscles are sore from the hours of tensing and spasming (and where they stabbed me with those super painful needles), but that's better today. It was just a weird, weird experience. I thought I'd up and gotten MS or something. I wasn't scared, but I was apprehensive... and all I could do was crack jokes at any and every opportunity. I'm not sure C appreciated that one much. It was hard for me to know how to relate to him, because he was... well... not worried, per se, because it was clear that whatever was happening was not life-threatening or injuring me in any way... but he was definitely concerned. Pacing. Watching me. Holding me and stroking my hair, my back, my hands, making sure I didn't shake right off of the chair or bed when the spasms would get particularly violent. Holding me up so I could "walk" to the various rooms/clinics/etc. Carrying me into the emergency rooms in his arms (and scaring the nurses because they thought I was seizing!! LOL) He sat there with me the whole night, solid as a rock. It was a comfort to have him nearby, especially when I finally slipped into sleep in the wee hours of the morning.

In any event, the rheum told me the other day to try the tramadol again for a few weeks since the Ty3 makes me sick, which is basically a "death sentence" for any kind of hope for relief from pain. I took 3 at one time last night, as well as two individual hot soaks, trying to get the pain down to an "I can sleep now" level (because I was still soooooooo tired!), but it took a really long time, some extra stretches, and my Yoga Pandora station to finally get me drifted off to sleep. It never did knock down the pain, really. Once I was out, though, I was out.

While I'm bummed that I missed C's only day off for a while by being completely loopy and woozy, the day before was actually a nice day. I was not feeling well, so I asked M if he would drive me around to get my errands done. He came by to be my chauffeur, and we had a grand old time. I enjoy conversing with him, and we have a lot in common, I think. We both love music, although he is much more accomplished and intelligent than I am in that area, but I think I'm gleaning things from him about music theory which I'm grateful for. We even ended up at Goodwill, and he threw some money at me in the form of buying me some well-loved books I stumbled across. I was guilty-grateful for that. (Yes, still with the same guilt issues that come from being there when people spend money on me. I firmly believe that it's got its roots in some self-worth issue somewhere, but I don't have the energy to try to root that one out right now. I'm tired.) I think I told him several times, though, that I just plain had fun. I haven't gotten out of the house to do anything with friends for a while now, and it was really just enjoyable. I felt almost normal for a while there!

It wasn't until both M's had cleared out that evening and I wandered off to bed that I began having the full-fledged full-body tremors, though I had been extremely fatigued that entire day. I just don't know what's what and related to what anymore. Who cares? I just know that I'm really tired today, I'm hurtin' like a big, pulsing, electrified bruise, but I'm also strangely optimistic.

Yes, I'm tired of dealing with the pain and such, but something that M told me while we were discussing it gave me a lot of hope. We were discussing how, on the whole, I have made steps forward in regards to dropping pain levels. (I have! I have! When you look at it over the span of months and months, I can see myself inching forward!) Yet, at the same time... I am oddly fearful of "getting better". I know that with the autoimmune stuff and with something chronic like this, I'll never be totally free. I won't. And while that's comforting because it lets me know that I wasn't just malingering for a season of my life and exploiting those around me, on the other hand it's kind of depressing. I still struggle with that black and white mentality so much, though, that it's either I'm "sick" or I'm "better". So if I get "better", then I was never really "sick", now was I? I mean, I could have gotten better at any time I chose, right? So it was my fault, then wasn't it? But if I never get better, then that validates the understanding that it's not my fault, that I'm not choosing this, and that I am trying my best, really.

I didn't articulate all of that, but touched on a few things briefly. Anyway, he pointed out that when I'm better I'm still just going to go out and help other people who are struggling and fighting in the way that I am now, and I'm still going to be kicking ass, so why worry about it? It made me think of the HJ, the work I'm doing now... how being in a better place, being in an awesome healthy relationship, doesn't mean that I was never abused. Hah! Right. That's laughable. But I can turn around and help others who have gone through similar things the best that I know how. I guess it's the same.

So while I'm whimpering and licking my wounds and thinking "good grief this sucks, I'm so grateful for pain killers!", I'm also thinking... "You know? I'm pretty badass, especially on tough days like today. It's so easy to be happy when you're not hurting. It's days like today that remind me I'm a warrior."

I hope I can remember that throughout the rest of the day. The morning is young, yet, after all...

And yes, I know you're reading this. So thanks, M. You were more of an encouragement than you knew.

Note: I learned another step in a valuable lesson yesterday, too. I can ask for help, and people will respond and help me. And it is not an imposition or a burden. If it were, they would say no. How do I know this? Because I am careful to surround myself with healthy people, or ones that are trying their damndest to be healthy and whole... and that means that our friendships and relationships are also healthy. And that means no manipulation on either side. And that means that asking for help? It's really just asking for help. And the help that is given is given freely, because we're friends.

Now that's a cool place to live.