I will be honest. I'm having a tough day today.

It isn't just the pain, though that's there. It isn't just the collection of "other" symptoms, though those are there too. (Seriously, where do these fevers come from?!) It isn't just the lag from yesterday's 4-hour-both-way rides to see my geneticist, though that's definitely there. It's just... all of it. All of it and the mental checklist and morass of file folders for undone tasks that's taking over my life and never seems to get any smaller. I have to do ______ for disability process, I have to do ____ and _____ so I can continue to receive basic medical care, and oh yeah, I have to evaluate whether I'm just not trying hard enough and that's why I'm gaining weight that I can't lose and why I'm taking money at exorbitant rates from my dad who totally deserves better and why I've doomed my husband to a life of "in sickness" with no "in health" and why I quit school and work and maybe I'm just not really trying, you know, to make the most of my days at home? Maybe I really am just lazy, and being sick is a convenient excuse to give up altogether? Maybe I'm not really that sick and I'm tricking myself into feeling more ill than I am?

I think anyone with a serious chronic illness will ask these questions of themselves at some point, especially if they've given up anything significant because of it, and especially if they're still young. I'm just having a hard time with staring down the years and wondering if I'm going to continue to decline or not. I'm doing my best not to, I really am. Sometimes, especially when you don't see any improvement, it's hard to keep at it, to take the meds, to swallow the vitamins, to do the physical therapy, to eat healthy, to look on the bright side. I'm just tired. I'm so tired, you know?

Anyway, the trip to Tucson yesterday was to see my geneticist, the one who actually diagnosed me with EDS. She had gone to a conference last month, and I was eager to hear if she had any insights for me that were new, and eager to discuss some research that I'd been doing into various co-morbid diseases and syndromes and possible other diseases that could be aggravating the EDS. (For anyone who is new and doesn't know what EDS or Ehlers-Danlos Syndrome is, the Ehlers-Danlos society has a nice, concise run-down of the various "types" found in the syndrome family. I fall very neatly into the Hypermobile type of EDS.) Unfortunately, there are no miracle cures as of yet, but she did have some interesting observations on preventative care.

The conversation we had was wonderful-- I enjoy a good discussion peppered with medical terms :)-- and I came away with a clearer understanding of what symptoms lie in the domain of the EDS, what symptoms come with comorbid diseases or syndromes, and what symptoms are the completely unusual outliers that I can focus on in a bid to find more answers about what's broken inside of me. I have a few interesting leads, but I don't really want to discuss them yet, not without further research. Something I am going to try out is kenesio tape, which I'm not really familiar with but she says is great for EDS because it supports the joints and provides compression to aid with blood flow. I've heard of it before, but not really looked into it because I'm allergic to adhesives, but I think I can make it work anyway, maybe with something like "vet tape" that doesn't have any glue. The idea is to be more proactive with splints and braces, to avoid injury before it happens instead of treating it afterward, and that's a new approach for me. I guess I hadn't really accepted my diagnosis yet, kind of hoping that it was all a big mistake or something... but if I'm being proactive about it, then that means that I accept that it's a thing, and that makes it real. It's not like I haven't done that before, but the funny thing about "chronic" is that it drags on through years and years and you have to face things more than once. I've read that chronic illness is cyclical, and I believe that the acceptance is cyclical too. Or maybe it's just a process. Either way, it just feels big and scary and I don't wanna! But on the other hand, if it can make me feel even a bit better, it's totally worth it, cause that means that I can apply that energy that was tied up in feeling crappy and making myself power through so much unpleasantness and I can use it for something productive, even if it's just having a friend over for tea.

Well, whatever. All I can do is keep trying, right? Plodding forward, one millimeter at a time, that's me. Maybe this plodding will lead me forward into a better place. I can only hope so.

I watched an anime with Corey last night that really tore me up. There's a stray cat that "adopts" one of the main characters and it's black and lovey and adorable little kitten thing, and through the few episodes it shows up you watch how it just adores this girl and she adores it and they're so happy together… and then it gets hit by a car, but it doesn't die right away. She finds it and it dies in her arms and she (and I) both basically lose it.

I thought I was over the loss of Bob and Cortes, but this silly cartoon brought back all of the grief as if it were totally fresh, and I have been mourning so HARD since then. One thing leads to another and I find myself grieving all the losses of my life at once, and I am paralyzed.

The really, really hard part is that if I had done just one thing differently, both might still be alive. With Cortes, I saw the puddle of antifreeze that had leaked out of Corey's truck before Cortes ever got to it, and I knew that I should sprinkle kitty litter over it to absorb the antifreeze so one of the cats wouldn't get hurt, but… I wasn't feeling well, and I was in pain, so I decided to leave it for later. I had the front door open to let in the lovely spring air, and that's how I saw Cortes lift his little face up and lick his mouth when he had lapped up most of that puddle of antifreeze. I didn't see him soon enough to stop him, but I had seen the puddle maybe an hour earlier and had chosen not to do anything about it, and he died because of my selfishness.

Then there's Bob Cat. He and I both grieved terribly for Cortes, he especially since they were litter mates and had never been separated. Bob had never been alone without his best friend before, and he would walk the house, crying for his brother. It was very distressing for both of us. He eventually got over it a little, as did I, but he didn't perk up entirely. I thought maybe he was still depressed, but he got a respiratory infection type thing and it lingered on for a few weeks. I took him to the vet to find out what was wrong, and it was discovered that Bob had feline leukemia, something he had probably contracted from some other cat in our neighborhood. I could have had him vaccinated, but I had chosen not to because we were struggling to pay for my medical bills already, and we didn't want to add vet bills on top of that. It's not an expensive vaccination, but I thought that I could gamble and win and thereby save money for my medical problems. My decision cost Bob his life. Both of the brothers lost, out of the blue. No warning. (Now I'm very paranoid whenever any of the cats seems to be looking a little run down or displays any kind of health problem.)

I miss my little babies. I raised them from newborns! They were my furry children and I miss them so much, and I hate myself so much for being so selfish that they died before they could even become full grown. My anger and my grief over my lovely babies of course brings up all of the feelings of loss and anger I've had to deal with over the past 5 years, and I feel like it's too much. I just want to lay down and not wake back up. I'm so tired, and I hurt so much.

I have been comforting myself with the knowledge that, had Bob and Cortes not died, I would never have gotten to experience the love and silly quirks of Fancy and Vladimir, both of whom I love deeply. They make me laugh often, and along with Juneaux I am often overwhelmed with their love and loyalty to me. I'm just afraid that I'm going to make a wrong choice somewhere along the line and lose one of them as well. Or worse, one of my people.

I'm just hurting. Hurting and worn down and tired and depressed and really, really frustrated all of the time. I feel like calling myself "princess warrior" is a stupid joke. There's nothing I'm dealing with that I can actually fight or change. I just try not to think about all of the crappyness, distracting myself with books or movies and such, but sometimes a memory or a feeling gets triggered and you just can't help yourself. Writing all this out makes me feel better, actually, along with the irrepressible and all consuming sobs and wailing.

I have some stuff for the weekend I need to get done. Hopefully it'll help distract me a bit, and I'll probably end up blasting some music that always makes me feel better while I work. Either that or I'll nap for a bit, THEN blast the music and work. I'd rather curl into a ball and just fade away, but I've already made promises, so… trudge on, I shall.

Took little Bobbers in to get that respiratory infection he couldn't kick taken care of. The vet was curious and suspicious as to why a normally healthy cat couldn't kick a regular infection, so he ran a test, and sure enough… Bob had contracted feline leukemia. Corey and I made the decision to put him down then and there, mostly because any money we can spare goes to treating my diseases, and he was just gonna be sick and miserable until he died. That's not fair to him. So, as much as it sucked, they euthanized him right then, with me holding him in my arms.

It was awful. Not because it wasn't quick and humane, but because I lost another child within 4 1/2 months. Bob's brother and litter-mate, Cortes, died on February 6th, and Bob wandered the house and property for weeks, crying for his brother, his favorite playmate and closest friend. That made it really hard for me to deal with Cortes's death, not to mention the incredible suddenness of it. He was fine that morning, he ate the antifreeze, two hours later he had been euthanized and was dead. Same with Bob. I had this horrible premonition when we took him in, but I kept trying to shake it off and chalk it up to worry, you know? But I knew there was something seriously wrong. I just knew. I know my cats. He cuddled up to me the night before, but I regret having been out of town all day and spending our last day together away from him. We had one last night together, though. Then the appointment, and within half an hour… boom. That was it. It was devastating.

Fortunately, Corey had the day off and was with me, so after I relinquished Bob's tiny, limp body he took me home and watched an episode of Cosmos with me while I ate cake I had bought the day before from my favorite bakery. I felt some better afterward, but my grief has stayed with me, and at that time worry was also gnawing at the edge of my consciousness as well, because we had to take the other two cats to be tested for feline leukemia, which apparently transmits incredibly easily via saliva. Bob and the other cats weren't very close, so there was little to no grooming going on, but all of the cats do share the same food and water dishes, which could totally pass the disease on to the others. I was going crazy with worry and fear and grief, making sure that I spent time with each of my kitties… in case it was the last time. I was really worried that Juneaux would be sick and I would lose him, because we've been together for so long, and been through so much… he's been the thing that has kept me alive/kept me from attempting suicide several times, and he is the thing that kept me going during my deepest and most miserable times of depression while beginning and trying to deal with the abuse and PTSD in Idaho. He is as near and dear to my heart as my family, and it would destroy me to lose him before he dies of old age.

Corey reminded me that I'm going to lose Juneaux someday anyway, but I told him that there is a huge difference between losing him to old age and losing him to tragedy. It's the same for people. It always tears you apart, but it's just… different.

Took the cats in late yesterday morning, and all of the employees and doctors were very kind and respectful, since they knew I had lost Bob just two days ago. Our regular vet was in that day, so she came back in after testing the two cats and asked me if I wanted the good news, or… the good news? I wasn't sure I heard her right the first time, so I was kind of silly and stunned, asking the same question a few times, but yes-- both Juneaux and Fancy have a clean bill of health. I made sure to get them both vaccinated against feline leukemia right then and there, though we still don't have enough money to cover the other vaccinations. I think they'll be okay. The vet said that one thing that worked in their favor is that they are adults, so their immune system is fully developed and stronger than Bob's was. Also, they don't get into fights regularly like Bob did, so less chance of catching it from other cats. I think that applies to rabies and distemper, as well.

I'm feeling better, emotionally, after having that relief of good news, though I am still grieving hard over Bob. Not constantly… and it's a little easier this time because there are no other kitties wandering around looking for him and crying, and also, Bob used to be out and about for large portions of the day, evening, and sometimes night, so it really just feels like he's out somewhere and he'll come back later. He wasn't constantly underfoot, so I'm not constantly reminded. That helps. I don't know if it'll be counterproductive in the long term to healing, but it feels better right now, and that's kind of all that I care about.

Went to a farewell party for two friends who are moving across the country (stop moving away, mofos!), and it was nice. I enjoyed myself, though for a while it seemed like everyone was just kind of wandering around more or less bored… but V, one of the other women, she insisted that everyone start playing these games that she brought, and that totally made the tone of the party so much better. I fell asleep during the second game, which is kinda surprising because it was super loud and lively, but when I need a nap my body will just go for it, and I had been putting it off all afternoon because I'd been out and about and busy. The man of the moving couple didn't quite seem like himself, which was weird, but then I've never been around him when he's drunk more than one or two beers, so that could be it. It could also just be the stress and grief of moving, especially moving away from such good friends and such a tight community such as we have now. I hope they can find the same happiness where they go. I had a bag of gifts for them, and he texted me later and said that it was a very touching gift, and thank you immensely. That made my heart smile, even if it is heavy that they're leaving. I care about them a great deal, and they have made it clear that they really like Corey and I, so it really sucks that they're moving. It is hard to find a couple our age to hang out with that aren't ghetto assholes or druggies, or with an obviously unhealthy relationship dynamic, and that's just way more drama than we want to expose ourselves to. The moving couple had so many of the same interests, and they have a zero-drama-tolerance philosophy, like us.

So I'm grieving two things. Three, if you count the memory of Cortes's death that's now super fresh and in my face again. I ate some italian food that I probably shouldn't have on Friday when we went out to eat (I begged for Italian over sushi, and now I'm paying for it lol), and now my guts are in a huge uproar. Probably because I ate the leftovers last night when I returned. My intestines sound like water gurgling down a drain pipe. It's definitely a weird sensation. I just wish I could get off of the damn toilet! That's where I'm living today, apparently. I know that my sadness is a large amount of my gut problems. I always have gut problems when I'm stressed out by anything… and losing what to me was legitimately a child, albeit furry... I consider the cats to be like furry human toddlers. That's about the age and communication level we're at together. Also, being unable to carry or bear children of my own… they are truly my surrogate babies. And I've raised most of them from infancy, if not birth. Bob and Cortes were both babies I raised from birth, and Juneaux was only a few months old when I found him. I feel that I have a right to grieve as much as any mother grieves over her lost human child. So, that being said… I know why my guts are all jacked up. Death, loss, stress, grief, loss…. so much loss… I'm just so glad that Corey understands my grieving process and is there to back me up and comfort me when I need it. Love that man.

What do you do, when everything comes crashing down around your ears? I don't mean literally, of course, although I had my doubts while Corey was up in the "attic" crawlspace to install the ceiling fan we bought for our bedroom (go tax returns, yeah!) and trying not to fall through the ceiling.

I dunno. Sometimes it all just kinda hits me, you know what I mean?

What do you do when you hate every second of your disease, but it's so imprisoning that you can never forget that you have it for any of those hated seconds? I'm talking Ehler's-Danlos here, although Addison's has been giving me a run for my money lately too, trying to manage my adrenal glands manually. Always a tough challenge for me, even more so lately.

So do you just hate your life, then, because the two are so inseparable? Usually I try to wrap my world in beauty, to find it, create it, whatever I have to do. Sometimes, though, the cold stones that weigh in the pit of my stomach overcome me and all I can see, all I can feel, is the destruction of the life that I had, the life that we planned, the future of my personal dreams and our mutual hopes. And it's hard, really hard, to not hate your life when every moment is agony and you know that there's no cure, there's no hope, there's no remission, and it keeps getting worse. I try not to think about what it'll be like in a year, 3 years, 25 years, but when I'm huddled on the bed and sobbing into my husband's pillow while trying not to move because it hurts, I think about those things. I think about them, and I am afraid.

I don't want to do this. The weight of the agony that waits for me is too heavy a load for me to bear. It's scary, but more than that I hate hate hate HATE what this agony has done to me personally, to my husband, and to our relationship. I hate what it's going to do. I appreciate, in a circumspect way, how it's going to make us better people and probably already has--as is the nature of suffering--but that thought remains rather subdued.

When he came to bed tonight and I lay next to him, trying to relax and mayyyyyybe get some sleep (no sleep to be had this night, alas), I eventually spoke up. (Choked with tears, of course.)

"I'm sorry for being so sick. I hate every second of it. I think I hate it more than you do. I hate what it's done to our life."

He didn't respond.

Not a word.

In my time of desperate emotional need, he stayed completely and 100% silent…

…except for the soft and sudden rustle of bedsheets as his foot sought out my two feet, entwining them beneath his leg and covering them with his own as he rubbed his instep against the top of my foot a few times.

All I could do was blink away the tears, sigh softly, and let this renewed sense of peace settle deep into the center of me where I will lock it away tightly and hold on to the hope that it's going to be okay… somehow. Three feet of peace--my two feet and his comforting one-- to remind me so.

"I love you."

"I love you too, lady."

I don't even know where to start on this topic. Do you know how many times I've been so devastated, ticked off, and just gutted when I find out that a person or a couple is not, underneath, the image that they presented? I can't even count. So many, many, many times I've thought that I've found a healthy and happily married couple to look up to, only to find through the course of time that they are broken underneath-- bitter fighting, ugly resentments or cold silence and miles and miles of distance, if not outright abuse. The Stottlemyers and my grandparents are pretty much the only examples I have had of functioning marriages, and I didn't even realize that my grandparents' relationship was all that healthy until very recent years.

So get this-- in our circle of friends, Corey and I are the example, the Westley and the Buttercup, the happy, healthy, functioning marriage. And it's true. It is. Or, at least, it was… because how do you admit to yourself that you're not happy with where things are at in your marriage, much less bring it up to your partner? But that's exactly what I did this weekend, and I feel good about it. We're talking, our communication is still wide open and blazing, and it's not like we're going to split up at all or anything. It's just… there's this distance. And there's these walls. There isn't sex anymore, or purposeless flirting… intimacy has fled, of a sort. I feel like we're just roommates at this point in so many ways, but I still love him on a very fundamental level and it still sweeps me away all the time. I know he still loves me and it shines through. (In more subtle ways than I'd like, but it's there. It's definitely there.) Plus he says it at least once a day, so there's that. Heh.

The times we've talked about it ("it" being the change in our relationship), it's basically presented as the set of diseases I have and the stress of all that is like a big ball of blah that has settled upon us and is glopping all over us like The Blob. What Corey hates the most is what these diseases have done to me. He hates seeing the change, the loss of independence, and he also kinda feels that maybe I'm a different person now than the person he married and he thinks he should feel bad about feeling that, like maybe he shouldn't feel that way, and the biggest thing is that he tries to keep all of this from me because he knows that I internalize things more than I ought to because of my upbringing and background. He thinks that I would take what he says and blame myself severely, and he doesn't want me to endure that kind of pain or to poison my mind and heart like that. He is so sure that I will blame myself and over-feel it and get depressed or so; it's sweet that he wants to protect me, but it is distancing us.

So I almost feel like I've become what I despise-- the so called healthy, happy marriage that is just a veneer for trouble underneath. I know that things aren't where either of us would like them to be, but they're not abysmal, either. It's very true, the incredible stress that chronic illness brings can break you down and tear you apart, but we are not going anywhere. Things are hard-- not only do we have the diseases and my disability and constant medical stuff to deal with, in addition to the day in, day out symptoms-- but we have major financial stress to battle with as well. I'm just super glad that we don't have debt to deal with beyond a credit card each and whatever outstanding medical bills I've got right now. It's just that my medical expenses totally ate up Corey's extra cushion money and now we're living paycheck to paycheck, hand to mouth. It's like every time he's about to even out, something comes along that screws everything up and takes all of the potential extra money (which is never more than one or two hundred dollars).

True story: I emailed my stepdad last week and begged him for money (again) to cover medical bills and such, as usual, but I also had to ask him for grocery money because Corey had paid the mortgage and all of our other bills-- we don't have anything on the docket that is extraneous, nothing indulgent, just basic life necessities-- and he had $11 in his bank account to last us 1 1/2 weeks until his next paycheck. I believe that's the lowest we've hit so far, honestly, but it was truly unnerving. I'm not sure I know the meaning of "disposable income" anymore. From time to time I'm still able to sneak a treat in for myself here and there, but it's in the form of a $2 muffin or a new bottle of nail polish, something like that. Corey operates like that as well, but he indulges far less often. We just need an edge of some sort, just something to help us get ahead and we could do it; I know we could. That's why we are hoping so hard that I get approved for disability-- it could be that edge, that little thing that turns things around for us. I was excited when I established the Tiara Fund and donations came trickling in, but that has completely dried up no matter how much I share the link. I really did think for a minute there that the Tiara Fund was going to be the thing that turned it around for us.

I won't lie-- our life is really frickin' stressful, and I know that's why we have faded to a facade, our vibrancy dulled by the cruel, grinding rhythm of sickness and hardship. I'd like to get help for us, but where do you turn when you are the healthiest relationship you know, even if you're kinda broken? And chronic illness issues within a marriage are so, so different from other kinds of issues. I don't know what to do. I really don't. I guess all we can do is keep the communication open, keep talking, and just hang on for dear life. I'm beginning to think that I've perfected the death grip, really, but I know with a sickening lurch to my gut that just as soon as I think things have gotten as bad as they will… shit happens. I've got doctor's appointments coming up to hopefully diagnose the extra stuff beyond fibromyalgia that I'm dealing with, and I have a cold feeling of dread that I won't like the answers that I get. But then, I feel that way about everything related to my health these days anyway…

I don't want to be a facade. I really, really don't, and as a person I think I've accomplished a marvelous level of authenticity so far (considering where I've come from and the shit I've had to wade through to get here), but as a couple… yeah, I think that for now it's all about the death grip.

I broke down crying today during my appointment with my "lady doctor". (Yeah, I could just say gynecologist, but I honestly like the phrase "lady doctor" better. It sounds more elegant, don't you think?") Well, not breaking down as in sobbing, like buckets of tears, but I did cry and she handed me the tissues and I felt a little embarrassed because I try to keep my crying to a minimum, and definitely private and not in front of my doctors. She was very understanding, though-- I love having her as a doctor. I only see her once a year, but she's awesome.

She asked what had transpired in the past year, so I gave her a quick rundown on my health, on the status of my marriage, of the stress that we are under (and that's where I started crying), etc. She was very sympathetic and encouraging, and she said that she hates the diagnosis of fibro the most for her patients because it just causes so much pain and horror in their lives. She is a total believer in fibro and how it can wreck a life, and we even had a little chat about pregnancy and fibro, the risks and challenges, etc. She really wished me well and had good wishes for me that I would find out, through the doctors and tests, what on earth is really going on so we can treat this and get it under control.

Get this: even my gynecologist, after just a brief rundown of my health changes in the last year, says straight out that I am dealing with something beyond fibromyalgia. There is another disease at play here and we haven't figured it out yet, but it is continuing to drag me down and make life feel more and more impossible. I want to find the line between reality and complaining, but I also just want to vent and explode into the atmosphere with a supersonic silent scream at how hard every day is, how much I miss my old life, and how sick I feel every day and night, how much acute agony I chronically endure. Since I got taken off of the hydroxychloroquine until my appointment with my rheumatologist in Phoenix, my joints have jumped in on the pain parade full force, even more so than before. I am not aware of a single joint in my body that doesn't ache on a near constant basis, even without use or pressure.

I hardly do hot baths anymore because putting weight on my hands to lever myself up and out of the tub is almost unbearable; walking is painful at all times because of my knees, ankles, and all the articulations in my feet. Did I mention that I received news at my last pain doc appointment that I basically have gout?! I'm a 26 year old woman. How the fuck can I have gout?! So I got this paper that lays out the foods I can and shouldn't eat, but I'd just started to revamp my diet a bit and make it healthier so I can lose weight hopefully, but the gout paper basically told me to continue eating the way that I have been! Just with more veggies. I think it's just going to be trial and error, really. This gout thing is in conjunction with my pain doc's sincere conviction that I have a type of rheumatoid arthritis that doesn't show up on the AI blood tests, but that there are definite ways of diagnosing. That's a very valid theory, especially considering my poor joints now that I'm off of the lupus/RA drug and doing so much more poorly. (My friend with the same type of RA as the doc is postulating takes hydroxychloroquine for it and it helps her. We both think that, you know, if I'm taking an RA drug and it's helping and then I get off of it and I worsen, that combined with other clear symptoms makes a pretty strong case for seronegative RA.)

By the way, a blog that I follow regularly, chroniccurve, has an entire post called Seronegativity for Dummies, and I strongly suggest you check it out if you're at all curious about what the heck I'm talking about. She's a great writer, a strong advocate, and does not spread misinformation. Best of all? She's totally my age or maybe a bit younger, a peer! I love it.

I am looking forward to my appointment the first week of December at the rheumatology department of the University of Arizona. I hope it will be a good and productive experience. Yes, I'd prefer that the doctors are pleasant and funny and good looking as well as intelligent and diligent, but honestly all of that falls on the back burner when I regard information and a correct diagnosis. What would you do for a Klondike bar? I think the question is, what would you do for a real live answer? If I just had a reason for my every increasing pain and continuing fatigue, it might make it easier to bear.

I realized this week that even though he loves me and he is totally there for me and is my #1 supporter, sees everything… Corey will never really understand what life is like for me, what it's like to be sick like this, none of that. (Random insert, but I'm really tired and falling asleep while typing this, so I closed my eyes for a very long blink and had a momentary dream/vision/hallucination of passing out and being lowered to the ground by my group of friends… the ground that was made of various kinds of ice cream. Woooooow.) So, back to Corey. See, he rarely even gets sick, and any pain he's experienced has been acute in nature, not to mention that he's good at putting mind over matter and ignoring the discomfort. Sometime I'll have to share the story of when he sprained his ankle at school in the morning, walked on it the entire day without seeing the nurse, and then walked home. Crazy dude. Crazy! But because of his lack of experience with prolonged pain and sickness, he really has no vantage point from which to really see into my experience and sort of assimilate it into his own, to pretend that he's me in a way.

Honestly, that realization was a little bit devastating to me. I knew he had my back but I had always just kind of assumed that he knew exactly what I was dealing with and was choosing to be dense at times. Oops. Heh. But no, he doesn't truly get it, and that's okay. Who does, really, unless they've lived it? I mean… I know what it's like to have my bones feel like they're filled with fire and etched with acid; I know where the articulation of my joints are because the ache is particularly sharp, thick, and overwhelming there. I know what it's like to literally be crippled by pain and not be able to take a step forward or stand at all, even sit, due to epic levels of concentrated pain in one area or another. I know what it's like to suddenly be dizzy and lose my footing on a completely flat surface. I know the jolting awake from a presumably sound sleep for no apparent reason (or because the pain followed you into your dream and it got too overwhelming), maybe just once that night, or maybe again and again and again, every hour or half hour, and I know the feeling of overwhelming gratefulness that I don't have to try to drag my invisibly battered and bruised carcass into work every day. Objects fly from my hands when a twitch attack strikes, I can't walk, and it jerks and jolts already painful muscles and tendons and joints. I need the walker to walk, especially with my very low back having decided to give up on me in excruciating spasms and weakness at totally random intervals, but my hands hurt badly from the weight on them as I push myself along with the walker and from having to grip the handles the whole time.

On the other hand, that same walker allows me independence that I would not have otherwise, and it allows me to walk a half an hour or more every night, pain or no pain. It's cleansing, this walking, and Corey joins me for that, too. It's during the walk, during the errands on his day off, that I realize he will never truly get it unless it happens to him. Good god, may it never happen to him. He hasn't the patience or the proper personality to deal with such unrelenting pain and the constant onslaught of old and new symptoms that always keep you off balance just a little. He does not have the good humor to laugh through or about a particularly painful day or hour or situation. He turns into a grouchy, mean person when subjected to large amounts of pain that are "semi-chronic" (lasting for more than a day). I've seen it first hand! So really, it's better for everyone involved that I'm the sick one, not him.

As you can see, there is much for me to think about and feel when it comes to my current "lifestyle". I didn't choose it but I do have to make the best of it because it's not going away, not anytime soon by my guess, and I'd rather not waste a huge chunk of my life just waiting to get better so I can begin being the person that I want to and doing the things that I want to do. Hell no. Corey summed it up pretty aptly when he said that there was a lot of "trauma" around the change in my life and my sicknesses, and he's right. There is a lot of trauma, stuff that I need to work through, and I really want to. I tried a particular place this week that seemed promising based on a lead from Bisbee when I was visiting the other week, but the people here were somewhat rude and quite unhelpful and it did not pan out at all. No counseling for me at this time; can't afford to add another doctor to the mix right now. Not when every penny of what I use to pay my doctors and get prescriptions and such is a gift from family or friends or somebody. God I hope I can sell these crafts that I've made somehow. It's the only way I can think to make some money right now that's within my physical capabilities. I haven't made much in the past few weeks, though. Been too… depressed. Sick. Totally unmotivated on top of feeling so feverish and flu like and drained and just blah. I'm still super shocked that I actually had a great time in Tucson and wasn't all that ill.

I blame our mattress, actually. My sister in law's mattress helped keep my pain down, I think, but ours beats me up like hell. We need either a new mattress or one of those memory foam topper thingies for it, and we also need new pillows, like, SO bad. Have for a couple of years now. Anyway, I can barely keep my eyes open, and I'm just rambling at this point in any event. Hit me up if you wanna buy us a mattress or pillows, or if you wanna buy some crafts, yeah? Keychains, beaded autumn wall hangings, necklaces, earrings, painted prescription bottles, and more. Maybe I'll do pictures some time. Maybe. If I remember… and feel like it. Heh.

Also, I was just hit with a strong but irrational desire to go to the zoo. What's that about?

I really need to have sex with my husband. Not just want, although that's definitely a factor, but need. The problem is… we're not exactly having sex these days, at least not on a regular basis.

It came up in a talk we had as we drove back from the pain doctor last week. I am regularly flirting with him, throwing out double entendres and dirty jokes, making sure to touch him and get Physical Touch in there, and I get chuckles out of him and sometimes a bit of reciprocating physical affection, but more often than not it's just a verbal acknowledgment of the joke and an implied rejection in the silence that follows. Sometimes I get an overt rejection, and rarely rarely rarely does he actually take me up on the offer.

I mean, I get why this is. His reasons are perfectly valid and acceptable, but that doesn't lessen the sting of rejection or the cumulative hunger and longing. It's stress, you see. Our life is super mega stressful right now because of the finances and my physical ailments, and it's been building and building and no matter what we do it just seems to keep piling up around us like a big, invisible grave and I just want to scream because it's just so hard. I feel like I can do anything, take on any challenge, with Drogo by my side, but the stress is eating away at him and burying him deep in soft, suffocating layers and I just don't know how much by my side he is anymore.

I'm a very sexual creature. I am, and I own that. (It's remarkable to be able to say that without shame; something I would never have been able to do a year or more ago!) It keeps me feeling emotionally connected, it relieves stress, it fights pain, and it regulates my mood and keeps me some above the incessant swirling blackness of depression. Being celibate on my terms is one thing, but this enforced dry spell? I'm not handling it well. He said that stress has killed his libido, and okay, that's valid. That's legitimate. But it hasn't killed mine, at least not entirely. Granted, I don't want to have sex as much as I did anymore. I just don't have the energy, I'm usually feeling crappy, and I just… don't. But I have never, ever turned him away when he makes advances. I know that if I give it a minute or two I'll get into it and want to proceed, and sure enough, that's what happens. It's just… you can only be turned down so often before it's just not even worth trying anymore.

I'm constantly flirting, trying to initiate… and now I understand the stories told by men with frigid wives, wives who have lost interest or gotten too busy and distracted with the family. I so get it now. The awful part? The awful part is that I know specifically several men and women who would jump into bed with me if I so much as gave half a consent. I can name them, count them on my fingers right now, but the only thing stopping me is loyalty and love to my husband. It just… it hurts, you know? I know it's not about me, but after a while you just kind of start to wonder, is it me? Do you even want to be in this marriage with me? Why am I so undesirable to you? How can I be such a hot commodity to everyone else, but you won't give me the time of day? And I can't… I can't do that anymore. So I guess I'm going to stop trying. What's the point? It only ever works when he feels in the mood anyway, so why bother? I'm so tired of getting turned down, turned away. Take your stress and leave me the hell alone.

…he doesn't even cuddle me anymore. The loving byplay of yesteryear is gone, and I am so achingly empty and alone. He knows how I feel-- I've not been secretive about this--but I suppose he feels as helpless as I do. He understands it, too. His comments and conversation on the topic makes that blatantly clear. But I just want to feel loved again… I know he loves me-- he says so. (Usually after I've said it first.) But I don't feel it. I feel like a nuisance, a burden, a more or less welcome roommate, an expensive pet maybe. No, he cuddles and caresses the cats more than he does me, so I don't even rank that high.

It hurts. It just hurts. And I don't know how to fix it except to fix myself and get better so there won't be any more crazy bills and not enough money in a paycheck for our basic necessities plus my medical needs and he won't withdraw every night into his man cave and while away the hours not thinking, not feeling, until he climbs into bed and falls asleep.

I know he loves me. But why can't he suck it up and show me? I want that more than anything in the world right now.

Update-- After posting this, I went ahead and succumbed to my grief and the body wracking sobs, though I tried to keep it mostly quiet. Somehow, Drogo has this freaky, uncanny talent of knowing 99% of the time when I'm crying and where I'm at, and today was no exception. I was just picking up my laptop again to edit the phrasing on some of the words (can't even remember now…) when he came into the room, laid down just behind me, and wrapped me up in a big, spooning embrace. That, of course, made me lose it even further, but I feel like I did a good job pretending that I was unaffected, even if he could completely see right through it. At first I thought that he was going to bed but it was much too early for that, so when I guessed/asked about it he answered wryly but truthfully.

As we lay there, ensconced in one another's arms, I found my courage and slowly spoke of most of what I'd written here, not even bothering to change the words. a.) I found them in the first place and I can re-use them if I so desire, b.) they applied so perfectly to the present situation.

Anyway, he vowed that he would be more affectionate with me, said that sometimes he forgets I need the touchy feelies so much. I really appreciated that (still do), and the conversation was quite productive. I feel much more loved, and in fact he answered one of my questions with a surprising yet pretty much protected wet boy. He retreats into his man cave and immerses himself in a fantasy world (whether it's games with the guys, anime, stumbling websites, etc.) partly because he just doesn't like seeing me sick all of the time. Who does? I reframed the question for myself, trying to imagine Drogo in my place and mine in his, and I can honestly say that I have zero confidence that I would not immediately do the same. I would hate to see Drogo sick day in and day out, being helpless to do a damn thing about it, and feeling like a big and clumsy oaf if I try to help him with day to day tasks. No, I completely understand why he does as he does, or at least well enough, but that doesn't lessen the sting or sort out the snarl of emotions.

I'm optimistic about the future. When he realizes there's a problem and says he's going to do something about it, he damn well does it. I don't expect to get more sex, and honestly this wasn't a ploy for more. If I can't get it without resorting to cheap parlor tricks and frosted glass bottles, then I can do without. I'm just really happy that he understands that this is a big deal for me and wants to make it better. I love that man. Oh, and he says that he loves me "lots and lots" :)

Right now I'm in "anger" and possibly "denial". I'm so pissed off at what I've lost, what I have to deal with, what I must endure… I'm just sick of it. Honestly, I'm SO over this.

I continue to deteriorate, despite my best efforts. I can't remember what it's like to have a normal, healthy day. The last time I had a day that I could consider "good" (read: less pain than usual, no limping and stiffness, no flu like symptoms to speak of) was… the 2nd week of April. The weekend that my friends came and cleaned my house for me.

I keep racking up new symptoms, tallying up the worsening of existing symptoms, and I continue to battle the medical system for appointments and diagnoses and whatnot. I am very pleased with the pain doc I finally found, and I think it's going to be a beautiful, long-term relationship.

But seriously… I just have this deep seated anger that I can't shake. What I'm going through isn't fair, it isn't right, and I'm just too young and generally amazing to be incapacitated so! There is so much that I could be doing to better the world around me, but what am I doing? Lying in bed, posting inane things on Facebook, and sleeping (or not). I feel like my life is being wasted, frankly… and that pisses me off. 

I had such promise, such dreams, so many talents, and they are being wasted. I don't feel like I'm contributing anything of worth to the world, or even the relationships that I hold dearest and closest. What do you do when you feel like your life has lost purpose and meaning? When you feel like you have lost purpose and meaning?

It's like… I still have these shreds of rebellion and hope that refuse to die out, but I'm not sure how to feed them right now. I'm just so… lost. I realized the other day (or was it today?) that even when we get my pain under control and some/most of my symptoms managed and handled… I will never go back to "normal". I guess I've been holding on to this fantasy that when I can finally get my pain managed that everything will stabilize and that I'll go back to being the same bouncy, energetic, productive person that I used to be. It's finally hitting me that my life is forever altered. I have no idea what my future looks like-- will it be full of the same untold suffering, day in and day out? Will I ever have a recovery to speak of? Am I going to spend the rest of my life just surviving?

Hell, I don't even know how to adequately articulate all of this. I can't explain what I'm feeling, because I really don't understand it myself. I just know that I'm angry, very very angry, and very sorrowful. I worked so hard to come to like instead of loathe myself, and now here I am again… I feel like all of my hard work has been undone, because I really don't like the person that I am right now. I mean, I like who I am inside well enough, I guess… I'm okay… but I hate the life I have now. I didn't choose this, I didn't ask for it, and I don't want it. Why me? Like, seriously, what the fuck?!

I'm also super pissed off at what this has done to my marriage. We're making it work, and we definitely love each other and all that jazz, but honestly it's hard. Marriage and relationships are hard to begin with, especially when you've got the baggage that I do, but with all of this chronic illness shit on top of it? It's like the odds are stacked against me so high and rising that I can't help but feel I unwittingly made an enemy somewhere who's in charge of all the cosmic, circumstantial shit. I hate how stressed Drogo is, I hate that the stress has killed our sex life, I hate all of the bills piling up and how inadequate it makes him feel when it's no fault of his own at all (and when he's actually borne up under this remarkably well!), and I hate being "that couple" that always has to ask for help from everyone around them. I hate that we don't have many friends, that we can't go out and do fun stuff, and that it's just such a struggle for so long. We have this morbid inside joke that we're ready for our sunshine and rainbows now! Any day, really. lol. But it's the truth. This is just so hard, on so many levels, and I'm sick of it. It's hard enough to have all of the sensations you experience be unpleasant ones day in and day out, but on top of that there's all of the emotional agony and stress to just exacerbate things.

I also hate that I'm fat now. Yeah, yeah, I'm still attractive, blah blah blah, but I'm over 200 lbs now. I have never been this heavy in my life, and it pisses me off to NO END that I try to eat well and I exercise as I can and I got off of the stupid meds that were helping me to gain weight, but I just keep gaining and gaining and I don't see much I can do different at this point. I mean, it's not like I'm eating any junk food at all. We spend $50 on groceries each week for both of us, combined, and Drogo is practically starving (I feel) to make sure that I get enough to eat. He is starting to realize that he needs to eat more, thank goodness, but it's not so bad because he's always been a rather spare eater in general. But I hate that he has to make that decision, and that we have to clip coupons and be so spare and careful in our choices because we have so many fucking bills to pay. I'm tired of actually coming up against the decisions of whether to buy food, gas, or medicine.

I know I'll work through this and eventually (lord I hope so) reach "acceptance", but right now… I'm just wallowing in the anger. Maybe it'll give me the fuel I need to keep going. It's either anger or soul killing despair, so I'll choose the more lively of the two.

I feel like what I'm feeling (and thinking, when I'm coherent enough) at this point in time can be summarized by the two following Skillet songs, "Never Surrender" and "Sick of It." Never Surrender, especially, is almost verbatim what my heart is sobbing to itself. (Emphasis mine, for especially applicable text.)

"Never Surrender"

Do you know what it's like when
You're scared to see yourself?
Do you know what it's like when
You wish you were someone else
Who didn't need your help to get by?
Do you know what it's like
To wanna surrender?

[Chorus:]
I don't wanna feel like this tomorrow
I don't wanna live like this today
Make me feel better
I wanna feel better
Stay with me here now
And never surrender

Do you now what it's like when
You're not who you wanna be?
Do you know what it's like to
Be your own worst enemy
Who sees the things in me I can't hide?
Do you know what it's like
to wanna surrender?

[Chorus]

Make me feel better,
You make me feel better,
You make me feel better,
Put me back together.

[Chorus]

Put me back together,
Never surrender,
Make me feel better.
You make me feel better,
Stay with me here now,
And never surrender.

"Sick Of It"

If you're sick
If you're sick
If you're sick
If you're sick of it
If you're sick
If you're sick
If you're sick of it!

When everything you do
Don't seem to matter.
You try but it's no use
Your world is getting blacker.

When every time you fail
Has no answer.
Every empty promise made
Is a reminder.

No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!
If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

Every single day
I chase my own tail
Like a rat inside a maze
Gotta get, gotta get, get away

I'm running out of time
For me to break this.
I'm tired of feeling like
I'm never gonna make it.

No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!
If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

I'm tired of it
I'm over it
I'm bored of it

Gotta fix this
I'm sick of it!

Raise your hands
If you're sick
If you're sick of it
Raise your hands
If you're sick
If you're sick of it

Sick of it!
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

Are you sick of it?
If you're sick
If you're sick
If you're sick of it!

Get rid of it!
If you're sick
If you're sick
If you're sick of it!

Here's the summary of my weekend that I posted in various forums and places on Facebook this weekend:

"My home has been invaded by long-distance cleaning fairies. They came over to see me and Drogo and to thoroughly clean our house and give me a massage. Basically? I cried at the incredible outpouring of love and care and consideration, and now I'm sitting here eating grapes, listening to Def Leppard, watching them clean and dance and be silly, and watch my husband assist/fetch cleaning supplies/be shooed out from underfoot. (I'm not allowed to help.) feeling overwhelmed by love with Lacey and 2 others.

So they just left… but three friends of mine conspired with my husband to show up and clean my house for me. They are from several hours away and were going to be coming to town for other reasons, so they were going to come and see us *anyway* to say hello, so they figured they'd just take care of me while they were at it  One of them, who I actually met for the first time yesterday, is a licensed massage therapist that has worked with fibro patients previously, and she gave me a foot massage yesterday and a back massage today. They did the dishes that I've been too sick to do for three weeks (yeah, ALL my dishes have been dirty for three weeks-- gross!), and I didn't realize how dirty my house had actually gotten until they cleaned it! One of them took nearly an hour to soak and nitty gritty scrub my bathtub so I could soak in super duper cleanliness, bless her heart.

I did what I could to express my thanks (beyond crying when I comprehended what they were here for when they showed up yesterday, of course!) so I made them little gift baskets last night and wrote them thank you cards with their names in hand-lettered calligraphy on the front and stamped wax seals on the envelope flaps. (Wish I'd thought to take pictures. Oh well.) They were so pleased! You'd have thought I'd given them the moon  The lesson I learned from both giving and receiving this weekend is that while it pays to give, it also pays to receive graciously and with humility and pure gratitude. It meant a LOT to those girls to be able to do something so obviously meaningful for me, even with no apparent reward anywhere in their future beyond my and Drogo's gratitude."

Yes, I cried when they revealed their intent. And I TOTALLY guessed who was mysteriously coming over! Drogo was having a prolonged text conversation and sporadic phone calls and wouldn't tell me who was coming over and I was like, "Is it Lacey?" (she lives hours away and we rarely get to see her) and he was like, "Why would it be Lacey?" Literally minutes later a knock sounds at the door and in walks Lacey. I knew it!!!!! And when they told me that they were there to clean the house and that the new friend was there to massage me, too… I just broke down. I still burst into tears when I look around and see the cleanliness of my house. My heart just cannot hold that much love! Dani, Lacey's girlfriend, scrubbed and soaked and scrubbed and scrubbed my bathtub and shower until it sparkles and gleams because she knows that I soak in it a lot. 

See, I had sent out a plea on Facebook the other day, giving up my pride and just asking for help from my friends because I can't do this anymore. My pain levels are too high and I'm too sick and I just can't make life work all by myself anymore and I need help! I had dishes in the sink that had been there going on three weeks, and I was too weak to wash them. I was/am too weak to cook myself food, so I'm relying on easy-make foods like sandwiches, cereal, fruit, yogurt, certain veggies, etc. For various reasons, people were unable to come to my rescue, but these ladies began plotting and subsequently Facebook stalking me to make sure that no one else stepped in to do the job they intended to do, which no one did. So they bought all manner of cleaning supplies and brought grungy shirts and braved the dust and the mold and the kitty dander to which they are all allergic, and my home is so lovely and bright and inhabitable now, it just brings a smile to my face when I hobble through :)

I wanted to "pay it forward" somehow, desperately, to give something back somehow, so I put together little gift packages for each one of them that night after they left. (We went out to dinner together, too, so that was fun. Fortunately, due to some extra pain killers headed my way via an anonymous source the day before, I had my best day this entire month, no exaggeration, and I was able to be up and about with them in a halfheartedly normal manner.) They opened their gifts and read their cards while they were visiting with me this afternoon before they left to go home and I couldn't believe their heartfelt appreciation over something so small. I mean, they had given me something so incredibly heartwarming and valuable… I felt as though my return gesture of appreciation was so feeble and faltering in comparison! But it was not so to them, and that is what matters.

The amazing thing is that just the gratitude that I had for the gift they gave me of their time and effort and taking care of something that I was not capable of doing on my own was enough for them. That was all they expected to receive, and it was more than enough for them. It meant so much to me, what they did, maybe more than they will ever understand. To go from being an active achiever, someone who "gets things done" to being unable to do your own dishes is… well, it's humiliating. You begin to question your own worth as a person, as a wife. What is the point of even keeping me around, you wonder. Why does my husband want me here? All I can do is sleep and generate mess. But these girls… they came in and gave me a fresh start. I can maintain the cleanliness, to a degree. When I use a dish, I clean it right away so it doesn't build up. They laughed with me and cracked jokes and told stories and, most of all, reaffirmed my worth as a person. They wanted to spend time with me. They came all this way for me. They wanted to do this for me, of their own free will. They went out of their way and went to trouble for me because I am of value. It cheered me up to an unspeakable degree. It's hard to explain.

As a side note, I also found a bit of usefulness as a chronic illness advocate as well. The massage therapist, Meli, has worked with fibro patients in the past but doesn't know much about the illness itself. Her mother deals with many chronic illnesses but is, as Meli describes it, a hypochondriac. She is the negative stereotype of chronic illness patients embodied, the type where they say "it's all in your head" and it's kinda mostly true. That's unfortunate, but that's kind of the place where she has had to base her knowledge and dealings from, because that's all she really knows of chronic illness. During her time with me, she asked me questions and I answered as best I could, and of course she saw me deal with everyday life in my fashion. In addition to that I mentioned something about spoons, which lead to my reading her The Spoon Theory by Christine Miserandino, which is like the American Constitution for chronic illness patients lol.

Well what is really neat is that today she told me that I have really changed her perspective on chronic illness, enlightened her, so to speak, and I feel much like how I used to when I worked with The Healing Journey and did advocacy for abuse survivors. This illness has taken so very much from me, and I suppose you could even say it has ruined my life. At this point, that could be a very accurate statement, though in the future that may no longer apply. (Fingers crossed!) However, as with the negative things that stem from abuse, I've managed to turn those potential life-ruiners into positives by using them to inform and educate others and advocate for rights, change, research, healing; whatever is necessary at that time. I'm a badass, man. Life can't keep me down, no matter how hard it tries! I'm just super grateful that I have helped Meli to understand fibromyalgia and chronic illnesses better, because as a massage therapist and a health practitioner, she has the potential to affect many lives in the future. By affecting her point of view, I have theoretically changed dozens, if not more, of lives of people that I will probably never meet. Crazy, right? All by simply being my awesome self and being honest yet upbeat about my struggles and health problems.

Things are looking up. I may not necessarily be on the mend (if this month is any indication, because it has been hell), but I can still be a positive force in the world even from within my prison of pain and other various symptoms. Watch out, world!

On another, slightly more humorous/bitter note, I made something for my new pain doc. I think she'll get a kick out of it. We hit it off pretty well, and she seems to have a sense of humor much like mine, though I would not dare to pull this on any of my other doctors. They'd make me pay in one way or another… but I figure this will emphasize the truth of my statement that this month has been the. worst. month. of my fibro. ever. EVER. (ever.) (The date is set for my next appointment. I'm fairly confident that the pain won't be going anywhere before then, soooo…)

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.

Well as it turns out, I didn't need to blog through my thoughts about what's going down with my honey. I just needed a good listening ear, sympathetic pats on the arm, and some words of sense that, yes, I already knew but needed to hear from another person. Most of my issues had to do with my being sicker than ever and wanting/needing more support from C in that regard. Mostly because I'm terrified and scared and lonely and overwhelmed. He stepped up admirably, and some solutions have been put forth that I find most satisfactory. Probably more on that later.

Also, the two M's are both making plans to vacate the premises within the next 6 months-ish. I am not pleased about this. However happy I am that they are moving on with their lives and getting out of this dead end town and pursuing their dreams and yada yada yada… I'm an inherently selfish person, and they are like, 8/10 of my support network here. They are, generally speaking, my rides places, my listening ears, my open hearts and arms, my dose of laughter when I don't feel like laughing and definitely when I do, my bawdy joke bandy-ers, and quest companions to both C and I in DnD and Magic. Whatever will I do without them? Just the thought makes me wilt inside. *sigh* But just because I'm settled here, likely for life, doesn't mean that others have to be chained here to suit my needs. It's just… why do all my good friends have to be at a distance?! J is all the way across the country, J and K and H are a full 24 hours' drive north, and the C family is hours north even of them… J and R are a state east of my family up north, my mom and the kids are all the way across the country as well, L is as far across the country as you can get from here (and is stealing M from me, that bitch! Kidding.), and E is too busy to come see me at all. If I'm not working with her I just don't see her, and we all know I don't leave the house any more.

My life is lonely. So lonely. That's part of what I was having problems with with C, is the sheer loneliness of my existence. Well, not the loneliness, but the inescapability of it all. He can comfort me and then go off and play games with B or D on the comp, but I'm stuck feeling awful. All day. Every day. It traps me, pins me to the couch or the bed, and there's nothing I can do about it that I'm not already doing. And who wants to ask people to come spend time with that?

How do I make new friends when these ones leave? They are taking pieces of my heart… but how do I find new people to fill the voids they will leave behind? It's not so simple for someone who is house bound, bed bound… Yes, I have my internet friends, but sometimes you just need someone to come over and be here with you, like M was for me last night. I'm happy for them, I really am, but I feel terribly selfish that this constitutes a personal crisis on my end of things.

Why do I have to be so all alone?

I guess it's a pity party. Why me? What did I ever do to deserve this? And I'm terrified, y'all. I'm so, so, so scared that this is my life, forever, for always… that I'll never get to really live life, not the way that I had always intended to. I won't get to travel. I won't get to work. I won't get to help people. I won't get to perform music. I won't get to raise a family. All of the talents and skills that I have are going to waste. My potential is withering like a sick plant because the body it is rooted in is inhospitable, toxic.

I realized the other day that, if I die (whether it's from natural causes, foul play, an accident, or by my own hand), C will be totally lost. It will destroy him. Do you know what it's like to basically be someone's reason for living? It's incredibly flattering, and it fills you with a sense of self-worth like none other. I mean, I'm his reason for living in a totally healthy kind of way, as in I'm his "true love" and I fill his life with meaning and joy, etc. etc. But I also feel bad because what kind of a life can I give him when I'm broken like this? He deserves so much more… Hell, I deserve so much more. We've had to deal with more in our first year of marriage than most people do in ten. I may be what gives his life meaning and dimension, as would the family that we someday hope to create, but… he kind of got gipped, I think.

I'm sorry. It just hits me sometimes… how sad I am about everything. I mean, I am such a bright, talented young woman. I am. But it seems like every single thing that I was, that I was capable of, is being systematically stripped away by this cocktail of sicknesses. My mental capacity and acuity that I was so proud of is falling by the wayside as forgetfulness and cognitive fog dominate my mental landscape. Often I have conversations of late that, later, I cannot tell whether they were reality or a dream unless there is some physical marker or transcript left behind. My vocabulary and spelling has taken a sharp decline, and I frequently struggle to find the "right" word, one that I know very well but cannot seem to access. I lose the names for commonplace things and events. The events of my own past are shrouded in mystery, lost to the gaping, fuzzy holes that have sprouted in my memory banks. It feels like my brain is made of swiss cheese. M remembers more about my life than I do because I've blogged it and he's read every single post, plus the events that he's actually been there for. J remembers more about my SOULS years than I do, more about our conversations… it's just frustrating to feel like a spectator to your own life.

All the things that I considered to be me… they're gone. Inaccessible. Stripped away, dulled down, tattered fragments. Who am I? What's the use of my even being here? At least I can still write, most of the time. My hands aren't that bad, not on a consistent basis. (Am I jinxing myself here? Ugh.)

It's just… it's just a pity party. An identity crisis. A sadness at losing two of my best friends to distance and the inevitable increase in isolation that will come with it.

On a completely different and random note, I watched Frozen yesterday, and it. is. awesome. A must-see. It's more musical than I expected, but it's very well done. Some of the songs get stuck in your head very firmly, such as "Let It Go". It's a short number, but powerful. I really like it. Here's the original song, and then here's The Piano Guys' interpretation of it, which is equally amazing.