Prolly more thoughts on this later, I dunno. Right now I'm just copying and pasting a post I sent out in one of my closer-knit fibro support groups this morning.

Well, I sure feel invalidated as hell this morning. I posted that AWESOME picture that I tagged y'all in (I'll include it here for those who I'm not friends with outside of the group) and not only does everyone think that I'm sitting here with a knife to my wrist apparently, I got a message in the wee hours of the morning and one that was there when I signed on this morning, and I dunno if you guys will catch the same vibe as I do but I'm totally getting the message that "you're too negative and you focus on your pain too much; knock it off and be cheerful, eh?" which is incredibly discouraging and angering and all kinds of things that I really just don't know how to articulate. Thoughts?
Last night's message: "Hello? I'm I don't know who you are and you don't need who I am but I am one of R's friends and somehow I've been able to see your posts on my bulletin... is something wrong? I've been kinda feeling down too but I shouldn't be.
Sorry so many typos on there lol.
I meant to say we don't know each other. I've been seeing the... negative stuff you've been posting. So I wanted... to know what was wrong... if you wanted to tell me. I can understand if you find it weird to talk to someone you don't know about something so personal but... I'm going to be moving out of AZ in May and I'mm feeling kinda down too so I thought it would be worth a shot."
This morning's message from a different person (Note: she had asked to be untagged in the photo because it looks bad for her, professionally as an actress.): "Yeah it was a cool piece but yeah most of the people who still use Facebook are actors directors producers etc so I stopped putting anything on there about pain or pretty much anything negative or if I do I try to make it funny. I stopped my blog a couple months ago my pain is what it is it's been two years this is where it will likely stay thinking about it just gives it power. Can I suggest something for you to read? Maybe you are not at a point where it's something yiu can absorb I wasn't ready when I bought it a few years ago read three pages and out it away but the secret has changed my life even before I read it. I started living the law of attraction and yes I still have a bad day but I'm very cautious about what I think and say bc what you think about you bring about. I'm a therapist and never got any if this but so much has changed w my pain my acting everythjng that I have to believe there is truth. Google it and try it for a couple weeks maybe it will help. I don't go to meetings lol I don't do anything other than watch my thinking patterns Just a thought from what I see in your patterns "
I responded, and I'll post that too if you want, but this response to MY response just makes me even more frustrated (but I KNOW that wasn't the intent, to attack, I guess I'm just sensitive???).

Note: Here's my response, for clarity's sake. "I get what you're saying, and that's something that I *do* try to live in my life. I'm very conscious of my thought patterns and I monitor my thoughts and feelings quite closely (hence why I blog and talk to my husband and besties all. the. time.). For me, though, it's more than just "don't think of negative things" whatever. I've learned that--and this is just for me, you understand, because I tried it the other way and it just made me miserable-- it is more healthy and productive to acknowledge whatever negative thoughts or feelings I have, think/talk through them, and then move on with my life. I don't wallow except on rare occasions, because everyone needs a pity party day once in a while I think, especially ppl who hurt all the damn time. But for me it's best for my mental and emotional health to acknowledge the stuff that ain't so positive, try to find something funny in it, and keep going.
The "don't think about negative things and you won't bring negative things into your life" dealie just doesn't work for me. And that's okay. I'm glad it has done a lot for you. For me, I put as much love and light out into the world as I can, and I get a TON back in return. But I don't dare gloss over the bad parts because it all just festers and creates "disease" in my life. Not the physical disease, of course (though our emotions and whatnot DO have an effect on our physical health as I'm sure you're well aware), but… oh, how to explain it? Anyway, I've known waaaaaay too many people that pretend nothing is wrong, ever, and we should only think and talk about positive things, etc. for me to want to go back to that kind of thinking intentionally. (And it could be that what I've experienced/read/seen is a distortion of what YOU are talking about… I mean, connotation is a hard thing to convey. You say "banana" and we will each have a different image that pops into our head and different feelings about the word though the core concept is the same. Try that with the word "love" or "happiness" and things get crazy lol) It's been my experience, working with abuse survivors, that acknowledging the negative stuff and processing it appropriately is what robs it of power, not pushing it away in favor of focusing on the positive. I believe that there's a balance of the two that can and must be achieved for optimal emotional and mental health. Maybe that balance doesn't always come across on Facebook, but this IS the place where a lot of my support system is located, and also where I try to raise awareness about the very real nitty gritty of what it's like to live with chronic pain, chronic depression, chronic illnesses and diseases, and PTSD and other abuse survivor related issues. On a totally unrelated note, have you ever thought about creating a facebook page strictly for your professional life? One of my artist friends has done that because of some of the same things you mentioned-- potential employers/buyers, professional peers, etc. It's a way for her to display her portfolio and other business related stuff without it getting cluttered in with her personal stuff or lost and vice versa."

"Thoughts are def hard to convey here bc yes I def still acknowledge the bad things and I've had a lot. I had a bad couple days and I have allowed myself to feel upset and angry it's more how I think about it that changed. I guess my perspective is different. I found out heartbreaking news about my ex acknowledged it would make me sad processed it talked to a couple people quickly but cautious of the words I used when talking about my future for me not the universe and then it passed. Everyone is different. I guess I've been thru so much bad in my life including men hurting me and pain obesity and have fought so hard I finally just found a balance or something that works. I don't tell most people about it bc it sounds too new age even to me lol. But I thought I'd ask but I get it's not for everyone. I'm also alone so I have to do things different. My support system is here but not much emotionally and I have no spouse or anyone to talk to or depend in to listen it say it will be ok. It's all up to me and that's ok. I've never been my own rock and I'm learning
Well I'm glad u have a way that works . Feel better"

So I guess I'm just super irritated because I'm always very self-conscious about how I come across, whether it's appropriate or if I'm being too negative or angry, etc. I know she's just trying to help, but it feels just as invalidating as someone who knows just what I choose to present to the world regarding my pain coming up and telling me that I've probably been handling it all wrong and this is what helped them and I should consider doing it that way. Wait, come to think of it that's happened to me countless times, with all of my diseases. And my food allergies. And it pisses me off, guys! I'm just like, you know what? Even if I chose to be completely negative and wallow in my misery and my pain and my agony and not try to find the positive and do my best and find humor in the situation and be totally authentic about my struggles and where I'm at, that is my right. That is my right as a sick person and that is my right as a healthy person. So stop fucking telling me how to handle my shit, okay?!

I was so pleased with myself because I've progressed so far on acceptance of my fibro diagnosis and that I'm not going to find an underlying disease to treat and miraculously recede my fibro to livable, which is a hope that I was clinging to until the "just fibro" appointment earlier this month. I've come across some well of determination, hope, and inspiration that I thought had dried up long since, beaten down by the daily grind of such incredible levels of pain and other miseries, and life is looking up for me. And then this.

Maybe it's no coincidence that just when I seem to be getting my feet under me in whatever battle I'm fighting (emotions, facing and processing and healing from abuse, fighting depression, my health, my food allergies, etc.) something comes along that tries to knock me on my ass again. Maybe I am just too open and authentic. Maybe I leave myself vulnerable to attack. Maybe I leave myself vulnerable to those who think they know better. God, why are there so many of those people in the world?!

Anyway, I'm quite irritated, angry, frustrated, guilty and not sure if it's legitimate guilt or totally illegitimate and false… Because of the crazy dysfunctional environment of most of my life, I have a hard time telling false guilt from legitimate guilt, and I tend to take on guilt that isn't mine and shouldn't be aimed at me at all. So I never quite trust the guilty feelings anymore, because I know that it quite probably isn't true or to be trusted. Generally, I'm above reproach. ;) So this is why I blog and openly put things out there in social media, to get the feedback of the wide network of people that I trust. I thought I could trust this chick; she's a fibro warrior too, a psychologist, an abuse survivor… but she took the opportunity to slip the sword between the ribs, probably all the while thinking that she was just helping me let out the bad blood and balance my humors! And that just goes to show that you can't trust everyone with your pain. According to her theory, I suppose I should stop this blogging and sorting through my thoughts. Which, as we all know, is baloney for me, as this blog is the thing that has helped me sort through my thoughts and feelings in a semi-coherent manner for years. I suppose that's what smarts the most-- the suggestion that my coping methods aren't good enough, that I've been doing it wrong this whole time and any progress I've made is incidental.

Enough ranting for the day, I suppose. I just had to get all this out there, and boy do I feel better! Whew. It's no longer roiling inside me in a jumbled mess, confusing me and making me heart-sick. Ahh. I seriously feel as though I can physically breathe better now.

Suck it, actress lady. You have your ways and I have mine, and mine are fucking awesome. And no, I'm not still bitter. :P
Hey, sorry about the absence. I'm alive and well-- as well as can be expected-- but I've just been recovering from the Celebirthsary weekend. It was really good in so many ways, but it wore me out. I slept for a few days straight, but I'm still wore out. I think that's a permanent state for me now lol. In fact, I was feeling particularly awful yesterday (and the day before, to be honest) because weather is changing and I got the fibro flu pretty bad. Kenobi came over to hang and take care of me, but I totally and completely knocked out on him like, half an hour after he got here. I woke up much later to see him packing his stuff and I managed a bleary goodbye before falling back into the dark pit of sleep. Sorry bro.

I don't know if I'll get over myself and get back into the swing of writing this week, but I will certainly try. Khal Drogo is taking me to my pain doctor appointment on Monday, which also happens to be our first anniversary! Go figure. Anyway, he is going to be a strong advocate for me, which I'm grateful for. He won't take a lame-ass answer like the one I got last month. I have a hard time standing up for myself with doctors, but I don't think that Drogo has that same problem.

One year. Wow. Where does the time go? And at the same time, I feel like we've been married years and years. Probably due to our long history. We've known each other over 10 years now. Can you believe it? I can. He's my destiny. (Read that last sentence in a breathy, girly voice, and then roll your eyes and promptly disregard it. I don't believe that junk.)

Well, I'm off to go wallow in my fibro flu misery again. Crichton's woman and I have planned a joint surprise bday party for Drogo and Crichton tonight, since they are both anti-party robots, and it's going to be fabulous. Drogo thinks that the party is only for his brother, which I told him about because I need him to get the both of them out of the house so we can decorate and bring in the cake and all that. Drogo knows there's a party happening; Crichton is completely oblivious to any party stuffs. He thinks we're all getting together for our regular DnD session. Bwahahahahaha! And when they return from fetching the pizza and soda, we will silly string them as they walk in the door.

Dare I mention the "gift" I got for Drogo? It's a gag pregnancy test thats "always positive". It's got the red cross in the little window so it looks like a positive pregnancy test. Kenobi thinks Drogo is gonna flip his shit, but I think it'll be funny, especially if the group thinks that it's real too! Of course I will break the news that it's a joke fairly soon after he opens it. I don't think he'll get upset, but we have talked about what we'd have to do if I got pregnant now, which is terminate the pregnancy. I want babies, but I am hoping against hope that I don't get pregnant at this point because I would hate to have to do that. (We have our reasons. Don't remember if I've elucidated them or not, but perhaps another time.) Peace out, homies. Catch you on the flip side.
I finally pulled out my chalks and created something, though it wasn't what I expected to come out. I kind of expected an abstract, but a stylized representation of me, asleep, and nightmares creeping in is what came out. I've been dealing with a lot of nightmares in the past few days, horrible dreams where the ones I love are hurting and people are in pain and there's nothing I can do about it. Many of them involved injury, death, violence, bad people, and inexplicable series of events. Due to the constraints of my illness I can't resist the sleepiness that overcomes me, but I don't like to be there because I wake up aching on the inside and out. Sleep used to be my refuge, but it's become a war zone of late. I hope this is just a phase that passes quickly. It's probably the subconscious workings out of my tortured body and mind, the considerations of the future that terrify me and the thought that "ending it all" might not be so bad except for the pain it would inflict on others. I guess it comes down to the question of how selfish I am. Can I stand to offload all my pain and suffering onto those I love to gain a surcease from my own constant torture? Unfortunately for me, I am not inherently that selfish, but I can't say what rash decisions I might make in the throes of agony. You've been warned.

Rose and I have plans to meet up for a few hours tomorrow during the Celebirthsary weekend that Drogo and I have planned. She's out west for spring break and I'm up north for those two days, so what's the harm in going a few hours more northward to see my bestie? No harm; none at all. I'm SO excited. We've only seen each other for a few hours in the past two years, and though I love her mom dearly she kind of put a damper on our last reunion and it wasn't possible to just sit and gossip over a chick flick like we would ordinarily have done. I was happy just to see her, of course, but I'm looking forward to our reunion amidst the pines and fresh mountain air of the bible college we both attended and were roomies at. We were discussing the rejuvenating effect the wilderness has on us, and how we both come alive when we're able to go out and explore and adventure and just wander… and I guess that conversation brought home the thoughts that have been percolating in my head for some time. The sense of loss when I realize that I can't join her in a merry hike amidst the trees like I want to. Remembering that I have to be sure to pack my pain pills and my other meds and my walker and the footstool set up for my walker so that Drogo can push me when I am too tired/hurt too much to walk anymore. The reality of my situation crashing home, once again.

When I was told that I am dealing with "just" fibromyalgia and not any autoimmune disease of any sort, it was a brutal shock for me. I didn't think that it was possible for "just" fibromyalgia to so drastically affect someone's life, health, and well being in this manner. I was positive that there was something behind the scenes aggravating and inflaming the fibromyalgia symptoms. There had to be something else, something treatable, so that when we found it and started working on it the fibromyalgia would recede as well. That was my working hypothesis. It turned out to be false (unless there's something neurological at play here, which the twitchies would suggest, but who the hell knows anymore?), and now I have to face the reality that it's "just" fibromyalgia, something that is not taken seriously in many cases and places… and something that I didn't really take seriously, in all honesty. But now I have to face the facts, and that includes the fact that my misery is due in large part to fibromyalgia, a little understood neuro-immunological disease/syndrome, and none of the treatments for fibro have improved my situation at all. I've simply continued to worsen. When I learned that it was "just" fibro, the horrible  reality that came crashing home was this: I've had active fibro for about a year and a half, during which I have not responded to any treatments and have worsened dramatically. If I'm looking forward to years and years of this, if the progression continues on the same scale that it has in this past year and a half… will I even be able to walk by the time I'm thirty? How much pain will I be in by then?

There are certain expectations that I have, unless something dramatically improves, certain things I've had to grieve and come to terms with… that I'm still coming to terms with…

I cannot have a family. I can barely take care of myself, and I'm not so good at that, so a baby is out of the question right now. If I were to get pregnant and if I could carry the baby to term (something I've been unable to do so far), I would have to be off of all my medicines, including pain killers. How sick would I be, how much agony would I be in, and how would that affect the development of my baby? The emotions and state of mind of the mother affect the baby, as those things result in chemical secretions. I want to be a mom, to have a family… I broke down crying the other night, and while Khal Drogo was comforting me I sobbed my apology to him that I cannot provide him with a family like he wants. It's something we both wanted, part of our shared vision for our union and our future… and right now it doesn't look like it is going to happen. Maybe if I get some better, and my friend acts as a surrogate like she volunteered to do… maybe I can have a family in the future. We were going to wait several years anyway, to get financially stable and make sure that we can actually take care of any children we might have. No going into debt unless emergency dictates so, or strategic financial planning.

I would be a kickass mom. I so would. I have a strong maternal instinct, kids just gravitate to me, and I practically raised my siblings when I was far too young to have to do so. Did you know that one of my nicknames up north was Mother Goose because of how the kids flocked to me? It makes me smile every time. I love kids. I want to have kids. I want to be a mother, and it kills me that I can't seem to carry my own and that right now it looks like I won't be well enough to care for a family. How fair would it be to bring a child into the world when I can't adequately care for them? Not fair at all. I don't want to disadvantage my babies that way. I dunno. We'll see. I still refuse to believe that I'll never be a mother, and the timing isn't right for a family right now anyway. So this one is on hold. It's far too painful to believe willy nilly.

Okay, here's another one: hiking. I miss being active; long walks at night, day hikes, backpacking trips, just being out and about without paying for it for the next few days. I miss going on adventures, challenging myself physically… Hell, I miss cleaning my house. I miss being able to do stuff myself, instead of relying on others for assistance. It is so infuriating to have to wait for someone else to get around to doing what I would be able to do seven times over in the time it takes them to get around to it (because people have their own lives), and I could do it so much better than them to boot. I have such good intentions of just gritting my teeth and doing a little bit at a time of the things I want to get done… but when the time comes I'm just so tired and nauseous and dizzy and I hurt and I just don't want to do it. It's like trying to function with a really bad flu, and it sucks.

I miss being independent. I am so reliant on other people and it kills me. I used to be the one that did things, that took care of other people, that made things happen… and now what? Now I don't. Here's another one: working. I miss my work as an admin assistant/office manager and peer support group leader and advocate. I miss being able to contribute to the home financially, but more than that I miss being able to make a positive contribution to the world around me, to my community, to the lives of broken girls and women. I miss giving. If life were fair, I'd be able to receive just as much as I gave, but that's kind of in short supply… there are a few key people who help out as they can, but for the most part I feel pretty abandoned. It's like, if you can't do anything for people then you get pushed to the back of the list. I can't claim that I didn't do the very same when I was still capable; I can't remember. And that's just the thing… I get forgotten. Left out. Left behind. I'm needy now, and an awkward burden to carry. I would love to say that I don't blame people for it, but the truth is that I'm super bitter about how little help I get even when I ask, which is a hard thing for me to do. I did find a friend that has committed to helping me clean and cook for a few hours every Saturday, but I'm skeptical as to whether that'll last or not. It's not exactly thrilling, sweeping floors as I hobble around helping where I can. I notice that people tend to not like being around a young person that's ill and un-fixable. It reminds them of their mortality, how misfortune can strike at any time and any age, and that's just a plain ol' downer.

I have to air this out, but only this once because I feel really ungrateful and like a jerk for even having an issue like this… but I'm really ticked about my birthday party. It was so much fun and I had a blast and I was so happy to have so many of my friends over… but so many of the people I invited didn't come. The ones who did show up are the ones that are the most consistent ones in my life, the ones who show up even when there's not cake. But the ones who didn't? They're the ones who claim to love me and we were close, once, for the most part… but they couldn't even be bothered to come to ONE thing? I don't ask for much, I don't think, but this was really important to me. I don't get much of a chance to have a happy, fun day. Most of my days are pretty flat and painful, sprinkled through with little things that make me smile. I have to hunt for them, though. See, about the people who didn't come… every person who bothered to make an excuse had a good one… but they all had excuses and didn't/couldn't come… and that hurt. A lot. Just another example of being shut out, left behind, and forgotten. Ouch. I'm also upset that I had to throw myself a birthday party. Like the logic doesn't even work-- everyone knows that I'm really sick and have a hard time with basic life, but it's left to the girl who hasn't even been cooking because it's too much to plan and execute a party. People knew I wanted a party, but as the saying goes, "If you want something done, you have to do it yourself." Not only did the sick girl have to make her own party happen, but the majority of people didn't even come to the thing that took so much effort and destroyed me for days upon days. Not cool, yo. Not cool.

I'm terrified that it's all in my head, and my limitations are self-imposed. I don't deny the physical aspects of this illness, not at all. But I am afraid that my "can'ts" aren't derived from past experience like I believe them to be but are rather mental constructs sprung up from who knows where. Maybe if I just tried harder I'd find that I really am not as crippled/disabled/sick as I thought? Maybe I just need to push myself more.

I guess I could go on, but the gist of this thing is that I'm reeling. Not only is there not something treatable lurking in the background, but this thing that I have has not responded to any treatments in the past or present. My year long sabbatical from the Healing Journey to get better? It's probably a permanent thing. My whole attitude of "just wait until I get better and then I'm gonna _______" is pointless, because there's not a "get better" phase to this disease that I can tell. I'm stuck like this, stuck like this forever… and I'm only 26. How many more years of untold suffering await me? I can't really think about that because it sends me spiraling into a panic attack, and do you blame me? Maybe you haven't seen my pain blog (which I only update sporadically now, because none of the doctors ever look at it so what's the frickin point?), but it's a dismal portrait. That… for the rest of my life… and likely to get worse. 

I need people. I need people to do random acts of kindness, to help with basic life activities, to listen to me vent, to throw me parties and buy me Arizona green teas and encourage me to exercise (and help me with it!) and all that jazz. I need people but I feel like I'm standing in this great void where my friends used to be. I do have some very strong supporters… but they live hundreds and thousands of miles away. They play an important role, to be sure, but I need people here. That's the part of my support system that's sadly lacking. I know, I know… people don't want to overextend me and make me sick or interrupt my naps or impose when I'm feeling poorly… I've heard that from my grandparents several times. Here's the thing, though… I don't feel good. Like, ever. Once in a blue moon, but it doesn't last long. If you're waiting for me to feel better before you interact with me, it's never gonna come. That's why I need you. I need help. I need love. I need friends, and I can't come to you. Can you understand that? Do you know what it's like to see your car out the window and know that it's just not safe for you to drive, to know that you're as stranded at home as if you had no vehicle at all? It's awful. I'm stuck here, and unless people come to me I don't see anyone. I'm that crazy old shut in lady at the end of the street, and I haven't even hit thirty yet.

"Just" fibro. "Just" a life sentence of pain, sickness, isolation, and the fight against depression.

Can you comprehend what it's like to know that your life is over at 26? The life I had planned is gone. It's like I died. Cassandra is dead, and I don't even know who I am anymore or what I can/want to do with my life. I was going to be a massage therapist. I was going to visit all 50 states, to travel overseas and try different foods and see art museums and antiquated buildings. I was going to have a family, have children. I was going to be a licensed peer support specialist, a licensed suicide prevention… person. (What are they called? Brain fog.) I was going to be the office manager for the HJ's new location, be the other half of the organization's head even more than I was before. I was going to hike all the way to Telegraph Pass. I was going to backpack from one rim of the Grand Canyon to the other. I was going to go to Alaska and hike in Denali Park. I was going to raise a garden in my backyard. I was going to unpack and organize my fucking craft room! There is so much that makes up Cassandra, so many dreams and ambitions and tightly held hopes… and they're all rendered pointless or impossible now. Maybe after some time has gone by and I've grieved appropriately I will challenge that word "impossible", but for now… the reality that I've been handed is very bitter, and I'm not sure how to handle it. I want to go hiking with my Desert Rose tomorrow, but I know that's not going to happen. I will feast upon her cinnamon rolls because gluten is a thing that's happening in my life again, and I am incredibly grateful for this (even if I am slightly allergic to wheat). It's so nice to have real baked goods again, and I've never gotten to taste Rose's baking. That's one dream that I can fulfill, at least.

Goodbye, Cassandra. Hello… whoever you are. Strong, fierce, stubborn, broken, sad, implausibly hopeful, beautiful, giving, intelligent (despite the brain fog), creative, flexible, sexy, hilarious, needy, angry, still standing despite it all. I feel empty inside from the wrenching away of my future, but I still have good things swirling around the ragged edges. The gaping, cavernous wound will heal with time, I'm sure, but for now… it hurts.
I've got a confession to make: I suck at being sick.

No, really. I mean sure, I'm not a huge grouchypants most of the time like some people would be if they had to carry this load *cough* myhusband *cough* but I'm not so great at the ins and outs of actually being sick.

To demonstrate, I shall show you a cartoon a friend posted on my fb timeline the other day, and it is so appropriate.
Calvin makes a pretty good point as well:
When it comes down to the nitty-gritty of taking care of myself while sick, I'm pretty terrible at it. The last time I recall eating a vegetable was cucumber and avocado in my sushi the day before my birthday; before that, who knows? I finally unpacked my toothbrush and toothpaste from the last trip to the big city I took… you know… a week ago. I went an entire week without brushing my teeth and only thought of it, like, twice. (And I seriously cannot recall the last time I flossed.) At least I've showered once this week. Or was it twice? Can't remember.

We have maybe 4 pieces of silverware left that are clean, no bowls, and 2 large plates. Everything else is dirty, because I just haven't done the dishes in about a week. I've either been gone, sleeping, or feeling too crappy to stand that long and put forth the energy. I did some earlier and am waiting for them to air dry so I can do some more, but now I'm in bed feeling like I'm gonna puke.

Facebook peeps only see what I choose to share, and even then it's more than most people with chronic illnesses tend to share. I'm open about the fact that I'm sick and I'm in pain all the time and that I'm on prescription pain killers (among other prescription drugs). Sometimes that leads to my having to grit my teeth, smile, and dodge well-meaning advice but it's a small price to pay for the awareness, community, and authenticity it's garnered.
I guess I can't be too hard on myself, though. Recall, if you will, the last time you had a bad flu. We're talking fever, chills, nausea, headache, achy body, the works. Were you very able to function and take care of yourself and the cats and the house? Not so much. Just wanted to huddle in bed, sleep, and ride it out, yeah? Yeah. That's my everyday life. I've caught the curse of the Eternal Flu. Probably when I desecrated that ancient Egyptian tomb… yep. I'm sure that's what triggered it. I knew it would pay off to learn hieroglyphics, but nooooo, my high school guidance counselor wouldn't go with it. Well, now I have someone to blame, right? Right.

I asked Star if she knew anyone that would be willing to come by once or twice a week and help me with light chores and cooking food to freeze and eat through the week. So far I haven't heard anything, but I just might put out a plea on Facebook… just as soon as I'm done begging for alms for the Celebirthsary weekend coming up. (This weekend!) I feel guilty about it… we're strapped so tight for money, and we could use the funds we've managed to gather for other things… but on the other hand, I think that with the stress of my declining further and his truck being smashed and all the other fun stuff that's been happening (half of it doesn't even make it onto these pages) we could really use the break. Plus we've got a free place to stay with a friend of mine, so it's not like we have to pay for a hotel. I just… *sigh* I wish I didn't cost Drogo so much money. I wish I could contribute in some way. I used to pull my weight by keeping the house all spiffy and tidy, but even that is a little beyond me now (as evidenced by the week's worth of dishes). I just… I need help. But I have nothing to offer in return for any assistance. I can't pay anyone, and I don't have any marketable skills unless you count binge-watching Netflix from my corner of the couch.

I'm nervous, y'all. Really nervous. I know Khal Drogo says we're going to be fine and we'll make it, etc. etc., but I wonder how much of that is him trying to set my mind at ease and protect me and how much is actual truth? It's always hard, starting out as a young married couple. This, though… this goes beyond "hard". Sometimes I wish I could live an extremely uneventful life. It seems that my life is fated to be extraordinary with crazy things happening all the time, big difficult mountains to shoulder through and after-school-special-worthy moral lessons to be learned. But hey, you know, everyone's got their own crap to deal with in some way or another. I can't say that all the crappiness is evenly distributed, but we all get a taste of it at some point or another. I just happen to be a connoisseur, is all.

Well, I'm still feeling pretty terrible so I'm going to curl up with a book and lose myself for a while if I can. Before I leave, though, I'll just put this right here. (It's a song that's been stuck in my head for a while now, and I finally found it! Not the typical style of music I like but it's addicting to me, at least. It makes me feel seductive for some reason, and I like it.)

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.




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. Birthday party! It was, naturally, not as bright and sparkly as I would have so desired, but it sufficed. As with all things of life there were pros and cons, disappointments and happy surprises.

I was running pretty low on energy the day before and the day of my birthday, but with Drogo's help I accomplished everything that was of the utmost importance (including checking on the status of my insurance now that I'm magically 26!), and it was a fun night.

I was upset, looking back on the pictures, at just how, um, rotund I have become. It really, really bothered me because I had been okay and accepting of it before-ish, but seeing it all in your face like that? Kind of a shock. Anyway, we're working on my rogue thyroid and trying to get me all stable, but that's not what this is about right now. All muffin-tops aside, we had cake and spontaneous pizza and soda and just a grand old time. Unexpectedly, I got a few presents which was awesome. I also got a few donations toward the Celebirthsary, which is rad.

Here's a few pics from the night.

Looking through the pictures from my party. The party was fun, everyone had a good time (I think), but I'm sitting here crying…

I've gained so much weight.

I'm so sad.

I've tried so hard not to gain this weight… to be healthy… to stay pretty and thin… to accept myself as "thick" or "curvy" or "big", and beautiful besides, but… pictures don't lie. (How does Drogo even pretend to still find me sexually appealing?)

I'm pretty fuckin' devastated.

Want an example? Here.

And now, for contrast, almost exactly a year ago…

That is what I'm used to looking like. Not the other one.

I hate this. I hate being encased in this blubber suit. My endocrinologist is worried about my thyroid, so we upped my dose. I don't have anything to worry about with the adrenals; we're monitoring those. My thyroid levels are good, but this inexplicable and seemingly unstoppable weight gain is a sign that something's up, somewhere.

You guuuuuuys… this may be shallow and petty, but I'm seriously very distressed and distraught over this. I hate being so out of control in every goddamn aspect of my life, even something as seemingly insignificant as my appearance.

I swore that this whatever-it-is wouldn't ruin my special day, my one special day, and it didn't… mostly. I didn't get to everything that I wanted, but I got enough done that it all worked out. It didn't mess up my day, though I was very tired and hurting (and I'm hurting like HELL right now… it's like, 8.5+ and I'm hating this), but it damn well has messed up my life, and I'm pissed.

I'll do a birthday recap later. Right now I'm too upset over my double chin, moon face, and gut. The enhanced bosom I can deal with… everything else, though, has gotta go. I'm doing my best. That's what kills me about this whole situation, is that I'm doing my best… and it's still not good enough. Not by a long shot. :'(
There is so much more to do than what my energy or pain levels allow for. Here it is, 2 am, and the house is still not tidied and we have not bought groceries for the week. Blaaaaaaah. I also have not dyed my hair back to red yet. I'm thinking that's not going to happen before my party, as I desired. Neither have I redone my toenails or pummiced my heels like I wanted. I just need a pedicure, someone else to do it for me! Hehe.

I splurged yesterday and bought some clothing more applicable to my size at Goodwill. Got a discount from the cashier because I asked for it after she found out it was my birthday soon. It was her birthday that day, as a matter of fact!

We got the ingredients for my friend the Mermaid to make the cakes for my party tomorrow night, and we're both almost a little too happy about it ^_^ She loves to bake, I love to eat. A match made in culinary heaven.

Pain's been bad. I think it's the weather. I am so determined not to let it ruin my fun, though, if only for these few days. I know and am sure I'll pay for it, but… I can't let this illness, whatever it is, completely dictate my life. Not every day. Not all the time. I refuse to let it completely ruin my life. So, party it is. And then a trip to the big city. Oh my god, am I gonna be destroyed… and it pisses me off that I know this in advance and know that my misery will increase. Beh.

Anyway… birthday! Party! Woohoo!
'Sup? I'm alive. Still. That's good news, right?

Still recovering physically from the trip and the unbelievable emotional low it brought… I will get the courage to blog about it soon, I'm sure. Maybe next week when I'm in the big city again for rheumatologist appointment (squee! I got in early!) and am hanging in the hotel with nothing to do besides internets. (I'll be going up with my grandparents who, conveniently, already had plans to be up there Tues-Weds for meetings my gramma has. So I'll just go up with them and spend the night and enjoy a little vacation ^_^) I'm sure it would be more entertaining and less energy consuming to just Pinterest, though, so that may happen. Heh.

I can't believe time has flown so fast and it's only 2 days until my birthday! I'm looking forward to my party with more than the normal fervor, simply because this week has been filled with so much apathy and despair. On a positive note, that night of drinking with my friend went well. I didn't get all drunk like the last time I drank, and I wasn't by myself so it was way more fun, but they did and we both were all flirty and affectionate and it was nice. We have both sibling-zoned each other so hard it's not even funny, but we're also both comfortable enough with our current relationships and each other to crack jokes at each other on a regular basis. Not physical flirting, mind you! No, my lovin' is reserved solely for my husband, but I am becoming more of a cuddly person with those I consider my very close friends, of which this person is one. My flirting isn't gender-exclusive, either. I flirt with my close friends of any gender and sexual orientation, so long as they're comfortable with that. I would never flirt with Rose, for example, because that would just be awkward. She's not that kinda gal, and I respect that. Also, I'm sure I'd never flirt with the Musician, because she is my sister and not just a close friend that I consider to be sister-like. That, too, would be awkward.

Anyway, just a quick update, I suppose. Let y'all know that I'm still here, still alive, and just working my way closer and closer to my birthday with a growing measure of excitement. Kahl Drogo doesn't read this, so I can say it here… I plan to go out and get him a brightly colored t-shirt for the party hehehe. And maybe something sparkly, if I can convince him to wear it. In any event, something bright, because he owns nothing bright. I wish I were exaggerating. He's also not bought new t-shirts in the entire time I've known him, except for work undershirts. That means 10 years of the same shirts… which is fine, because he takes good care of them and they're hardly wearing out at all. But… I think it's time for at least one new one. Especially if it's bright and happy :D

Note: Remember, if you need nicknames and who is who, check out the post Appellations.
…I spent the afternoon/evening with a friend of undisclosed name drinking wine coolers (and rum, they had rum mostly) and watching movies.

I regret nothing.

In fact, I feel happier and more relaxed than I have in a while. And especially after the day I had yesterday? It is a huge relief. Enough to make me want to drink again, and soon… which the Dragon does not approve of. lol. Of course, I'll honor his wishes… probably. Sorta.

But man… I feel… relaxed. Happy. Sleepy. I like this "drinking thing" when I do it right and don't make myself sick. I didn't even get drunk. I just got… happy.

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

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

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

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

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

And with that, I'm out.

*radio static*

(For a glossary of "characters" and their nicknames, check here.)

I've been putting this post off for a while, because every time I think about sitting down and typing it all out, I'm just overwhelmed with the effort that it will take and I figure I'll do something easier. Did you know it takes energy to feel things, and more energy than that to actually process them or record them? Yup. Lots of energy, both emotional and mental, and most times it's easier to just say, "Ehhhh… I think I'll go look at funny pictures of cats, instead."


I do need to get this all out there, because negative thoughts in my brain are like a poison that infiltrate my daily workings without my really being aware of it, and they taint my reality. So it is important to me to get it all out there, outside of me… where I can evaluate it more intellectually, without the ineffectual whirrings and endless cyclings of my thought processes. I've been trying to get it out, verbally, with the Dragon, but that hasn't been going so well. I've been very moody to boot, because I've got all these fears and feels and crazy thoughts all just tumbling around in my head and I'm desperate for consolation and affirmation and someone to set me straight and tell me that it's all gonna be okay and that I'm wrong and I'm amazing and all that jazz… but that is definitely not Drogo's strong point. It's okay. I know who I married, and while I may be frustrated by it at times I have acknowledged from the get-go that affirmations are really just not something he does well. But since he's my husband and my mate, I instinctively look to him to fill my needs (especially as he's the one around most often), but I realized recently that I've been asking too much of him, asking him to fill a thousand different roles that can and should be filled by a myriad of people. No one person can be everything to another person, and it's silly and futile to expect that… but I kinda have been.

It doesn't help that I'm a shut-in, so unless people come to me… nothing is going on. Also, it takes energy to reach out and ask for help, and often it doesn't feel worth the effort. I want people to just know that I need help, and that I need it all. the. time. and to just kind of… do things that help. I'm tired of asking for help, if that makes sense. I just want to be taken care of. I'm tired. So tired. Tired of phone calls and doctor's appointments and medical bills and futile attempts at keeping the house tidy and being stuck at home every single day and feeling like I should be doing so much more and better when really all I want to do is curl up and hibernate and have someone else come deal with my life for me so I can focus on just being sick and hopefully getting better. (Essentially? I just want to be a house cat.)

Right. So there's all that. But anyway, I realized that the glories of the internet mean that I can reach out to my friends that are scattered across the country and dump on them instead of my husband! Genius, right? So that's kind of my plan… is to spread my woes a little more thinly and evenly across the network of "people who give two shits about me" and ease some of the tension that I've introduced into my marriage. Being married with (and to someone with) a chronic illness is hard. He's doing an admirable job. I just have a ton of feels that I don't know how to deal with and neither does he and so we're left with a bunch of elephants in the room, but if you've seen my living room then you know that it's barely big enough for the furniture we have in there much less a bunch of elephants and so it's pretty crowded and we're both on edge.

The other day we were in line at the bank and I started talking about how I feel and the negative thoughts rattling around in my head, but Drogo told me to stop talking and wait in line quietly. Why? Because what I was saying was bad and not true and he didn't feel that I should be giving power to those thoughts by speaking them as though they're reality. He told me to "write about it". So here I am. But see, the thing is, I already wrote about it the other day to Rose, so I'm going to do some copy-pasting here in a minute… but first I want to bring up a couple of things that I haven't really discussed with anyone, save Drogo (briefly) and one or two of my fibro friends (again, briefly).

I'm terrified.

That's no secret, but the thing is that there are many things I'm terrified about. The one that I haven't really voiced to many people yet is this: I'm so, so, so afraid that there's nothing else wrong with me, that it's "just fibro", and that there's nothing fixable or treatable about my situation. I've tried all the fibro meds, and they did worse than nothing. I'm still on gabapentin, a fairly high dose, but my pain is still at high levels most of the time. I stretch and exercise a little every day, I eat as healthy and simply as I can, I hydrate, I tried yoga (which I still do because I love it and it feels awesome sometimes), I tried acupuncture and massage and Kangen water and yes I take B vitamins and my vitamin D levels are good and so are all my other mineral levels… I do all the right things, but I am still getting worse and worse… and if it's "just fibro"… then it seems there's nothing I can do about it but hang on for the continued decline and hope that I die before it gets too terribly miserable. (I keep saying, "I don't know how it could get worse… how could I possibly feel worse than this on a regular basis?" And then it happens, and then I'm sad. And round and round the cycle goes.)

I'm scared that we'll never find out what is really wrong with me and I'm just going to get sicker and sicker as Drogo stands by, watching helplessly.

I'm scared that I'm going to get worse and worse and worse until I'm basically just a sad piece of meat with a pretty face that can't even go to the bathroom by herself.

And then there's the existential crisis part of things… and this is where I'm going to copy and paste from my conversation with Rose, because why explain things twice when the first time was eloquent enough?

"Speaking of rehashing stuff… I've been having a very hard time lately with my sickness and disability.

Maybe because I got the news it's not lupus… because now I STILL have no answers… and the thing that seemed to fit so well (albeit a horrible fate) just isn't, and I don't know what it is and I'm really afraid that it's all just in my head you know? That, like, somehow I'm making myself sick... And I'd stop it if I could, but I don't know HOW.

And I'm afraid that deep down I don't really want to stop it because this kind of gives me a free pass out of life, you know? And responsibilities.

Blah. I dunno. It's just so HARD to be sick all the time and not know WHY and not know how to FIX it and for even the meds that are supposed to help to not really be effective… and to wonder if I'm just going to keep going downhill until I eventually die of some mysterious cause?

And I'm just like… what kind of a wife am I? Kahl Drogo married me expecting to have a partner in life, to have babies and make a family… and he got THIS.

I feel so LOST. Especially now that I can't even do the healing journey anymore. Like, what's my purpose for even being here? What is the point of my life? What good am I? I guess it comes down to intrinsic self-worth. Now that I CAN'T do anything productive, really… who am I? What am I worth? What can I contribute to the world?

“It must be really tough to not feel like you're contributing to the world”
Yes, it is. I don't know what to do with myself besides sleep… I've started doing at least 1 run through of Sun Salutation (a yoga practice) a day, and that makes me feel a little better about myself… like I'm being more proactive about my health… and my weight.

I've gained more weight. I'm trying *REALLY* hard to see myself as a good, valuable, lovable person, but… I accomplish very little, I look different than I used to and how I feel that I should.. I basically feel like a failure as a human being and a woman.

Like, by the time Drogo gets home I'm usually feeling so terrible that we don't even have sex hardly at all anymore. And I think that hits me the hardest. I know it's because he cares about my physical health and doesn't want to make me feel worse (and sex often does have a backlash on me and I kinda flare), but I have a hard time not believing that it's not because I'm now an unattractive, heavy person.

Oh Rose… I'm just so lost right now. It's so HARD. LIfe is just HARD, and I can't understand why...

I have SO MUCH to offer the world, and I'm trapped by my body and my circumstances and it's NOT FAIR.

Like, why me? Why not G? Why not people who do terrible things?

I've only ever kicked a kitten on accident, I swear!

And I'm just so lonely...

Oh Rose… life is just so hard.

And I don't know what i can do about it, if anything.

At least I don't actually believe the person who told me that I got sick because I left God.

It's just really hard to find reasons to keep trying.. to keep waking up every day… to keep living.

And that terrifies me.

And what scares me the most is that, based on personal experience… I can only expect this to get worse. How much worse can it get? I can never imagine how I can feel worse, but then it comes and I do...

How long am I going to have to live like this? The rest of my life? Is my health just going to keep deteriorating for unknown reasons for years and years until I'm basically a pain-wracked vegetable?

Rose, I want to have kids! I want to grow a garden. I want to hike the Grand Canyon rim to rim. I want to travel to Italy with my babies and feed them awesome food and show them old buildings and wonderful paintings. I want to make my family pancakes on the weekends and keep the house clean so my husband WANTS to come home to his happy family… I want… I want so much.

I just… I don't understand. And that's okay. I know I don't have to. I just wish that I had something to cling to...

Even when I was a Christian...

there wasn't much hope for me, sadly.

Just the fear of what would happen if I didn't do it all right. I know now that that's not the way.

Someday I'll find it.

But I still believe in God… in higher purposes…

but I just don't see how my being unable to contribute to the world serves a higher purpose.

So anyway… now that we've hashed… lol. I'm just having a hard time lately. Drogo knows, he understands, and he's been good about it. Really good.

We talked about how I'm less physically capable than I was before, as much as I hate to admit it, and I need help keeping the house somewhat tidy since that is VERY important to me. (And let's face it… I have to look at it all day lol)

So now he is in charge of sweeping the floor every other day or so. And he also *finally* got on the ball about the water leak in the front yard and we went to Lowes the other day and got a rake and a shovel.

Tomorrow he will probably get some of the guys over here to help, but he's going to dig up the front yard and see where the leak is coming from and fix it. It's been a month or two in the "putting off" phase lol"

And that's where I am. I'm scared, I'm lonely, I'm overwhelmed, I'm really sick… and I'm so tired. Tired of fighting. Tired of having to fight, each and every day for… for what? I'm lost. I'm lost and lonely and fighting to feel like a decent, worthwhile human being.

And you know what else? I didn't mention this to Rose, but I'm angry. I'm very angry. I'm angry that I've been "struck down" and so many other people are free to do as they please with no physical ramifications and they feel fine and they can go about their lives and work and have fun and raise families and I can't and I don't know why and it's not fair because I'd be so amazing at all of those things!! I'm angry because the Dragon has the physical capabilities to do anything he wants… but he doesn't. I mean, he does do what he wants, but he doesn't do what I would do if I were to have his health. I'm angry that he gets to be healthy and I don't, angry that he is healthy and chooses to put stuff off anyway, angry that he's fine physically and he doesn't automatically step in and take care of me… angry that I have to ask so hard for what I need when he can so easily provide it… angry that, after months and months of asking, NO ONE in my circle of healthy friends has stepped up and helped me straighten up my goddamn craft room!!

I'm furious that I'm at the mercy of everyone around me, and it doesn't feel like people really understand that or care as much as I'd like and need them to. I'm furious at how helpless I am, how lonely I am, and how I'm powerless to do anything about it when I used to be such a powerhouse of getting stuff done and helping people and being there for others…

People I know keep telling me, "Oh yeah, call me when you feel better and we'll get together!" Folks, it's not happening. I pretty much don't ever "feel better". I have about three modes: feeling bad/poorly and worn out; feeling awful/exhausted/all I can do is sleep; Please Kill Me, You Would Be Doing Me A Mercy. So if you want to see me, you have to come to me. Come pick me up, take me someplace. Call first, see if I'm sleeping or feeling abysmal, and if I'm not I'll probably come with you as long as you are the one making the effort to drive, make plans, etc. I go with Drogo on errands on the weekends, even if I'm feeling really gross, just because I want to spend time with him and that's my one chance during the week to be out and about. I may drive to and from a doctor's appointment some time during the week, but that doesn't mean I'm "out and about". I'm trying to scrape together enough energy to make it there, get through my appointment, and make it back home safely so I can collapse on the couch or into bed.

If you miss me… show me. Come to me, because I can't come to you. A few people do. But not most of them. And that both angers and completely engulfs me in grief. I've had friends tell me, "You're isolating yourself. That's not good. You need to get out and do stuff again; get involved." Oh, I would if I could. Maybe I am isolating… but not by choice. And I'm furious about that.

So please, those reading… feel free to comment with some affirmations. God knows I could use it right now. My body always feels like junk, but it's hard to have your heart and soul feeling gross, too.