I feel like I've been gone forever from the good ol' blog. It's only been 20 days, but that can be an eternity. I would explain everything that has gone down, but in the words of Inigo Montoya, "No, is too much. Let me sum up."

First of all, the appointment at the University was a rousing success! The doctor's bedside manner was professional but kind, and he was very thorough. I came away with several new diagnoses and a heart singing with vindication that it was not "just fibromyalgia" this whole time. I'm also dealing with Hypermobility Syndrome, Undifferentiated Connective Tissue Disease, and--get this-- Inflammatory Polyarthritis. Yep, that's right. I'm basically an arthritic old woman lol. So right now it's all still pretty vague. We don't have specifics as to what kind of arthritis or connective tissue disease I have, but they took, like, 10 vials of blood, I've gotten x-rays and ultrasounds of my hands, and I go back in February to learn more about what ails me. The Hypermobility makes sense, too. Even if it's not a part of EDS, it can be a thing unto itself and it still causes insane amounts of pain whether it's a standalone or part of the Syndrome. That's where my Intractable Pain comes from, and then I have the arthritic and connective disease pain exacerbating it. No wonder I'm in hell all of the time, why I require overly strong doses of pain medication to keep my body from crashing and burning and putting me in the hospital.

Let's see, what else? Ummm… yeah, I've pretty much spent a lot of this month in bed, sleeping. My friend took me to Tucson and we made a fun trip out of it, going to spend the night with another friend of mine in Sierra Vista, and that was cool. Mostly I've just been trying to survive, buying or making Christmas gifts where I could because I love love love giving people gifts.

Funny, it felt like I had so much stored up and ready to be poured out, but I guess that's my big news. I'm still having a hard time processing the implications of new diagnoses and such, and that's made it rough. In addition to that, Corey's youngest sister passed away a few weeks ago, and that's been really hard. The week that we were making arrangements was the most difficult of all, I think… and I've definitely been taking it harder than Corey. That's fairly normal though, I suppose, at least for us. He doesn't really go in for the whole "displays of emotion" thing, whereas I can't help it. We inherited her young snake (because her dad had no idea how to deal with a snake and didn't want to), and the first time we went to feed her it was a "pinkie", or a baby mouse that has no fur to speak of and hasn't opened its eyes yet. They're small, and we weren't sure how big of a mouse Lemon, the snake, could handle. I was very upset seeing the little guy being sacrificed like that-- it's always harder for me the younger they are-- and when Lemon attacked it wrong and tried to eat it while it was still alive (she's still young and not too good at this yet), I lost it and fled to the bedroom, sobbing. Corey came in a bit later and made sure I was alright, but truthfully he found it a bit amusing. He has some dark humor like that.

So it's kinda been a hell of a month. In addition to all of that, I had some not-very-good pain killers to try out this month, which is what led to the "surviving" part. The spending most of my time sleeping thing is, apparently, an automatic response to grief and excessive stress. However, Corey has been more affectionate and interested in our relationship. I think that the conversations we had made a difference for him, and I know that it got me thinking more deeply. I think the sudden loss has made him more attentive toward me as well, because he is sensitive toward my moods and making sure that I don't fall too far. I love that man, I really do.

Tomorrow is Christmas, and it'll be the first one in my life that I can recall not spending with my mom and siblings. Corey doesn't celebrate holidays, and I'm a bit of a grinch myself, but there are some things about certain holidays that I like and Christmas holds a few favorites. I like lights and Christmas trees and gifts and family. I wasn't able to make any of that happen this year, though, because I'm just too sick, exhausted, and whatever to put forth the effort. I will be having dinner with my grandparents tomorrow afternoon, so that's something. I'm pretty sure they have a gift for me, and I have something for them that I made, but they're really not putting effort into it either because all of the grandkids are gone or grown… kinda makes me sad. But my hopes are that by next Christmas I'll have the vigor to make some effort toward the things that I love, maybe even be able to travel again and see my folks. I really hope so. I hate living all the way across the country from them.

Today wasn't too bad, though. I got a massage, slept, ate cake, and watched How I Met Your Mother all wrapped up in my electric blanket on the couch. Not bad at all, I'd say, though much different than I've spent my Christmas Eve's in the past. I'm hoping to "make" Corey take me out to see some of the impressive Christmas lights tonight after he gets home from work. That'd be neat.

So today is the day. I'm headed to the University to see the good ol' doctors and hopefully, hopefully get some answers, maybe move forward an iota in this journey. My friend drove me, and we've been having a grand old time. She's a pretty new friend, but we've bonded quickly and have a lot in common. I really enjoy spending time with her, and she doesn't mind driving me these long distances so it's a really good symbiotic relationship.

It has been so long since I've gotten out of the house and just had fun, but when I'm out on road trips with Cheryl we have fun! Granted, they're medical road trips, but who cares? We went and got pedicures last night after getting into town because I've needed one desperately for some time. The bottoms of my feet and my heels were dried, cracked, peeling and bleeding but I can't reach my feet to take care of them anymore. (I can't soak in the tub any longer either, because I can't get myself up and out; it's too painful and difficult.) I haven't been able to bend like that for some time, just because of the spine and ribcage and stuff, and I have more difficulty bending my knees now. I ask Corey to help me now and then, but he blows me off because he doesn't want to do it, like most of the things I ask him to do for me. Massages are the most frequent request, but he finds them boring and so it doesn't happen. I'm hoping that he can learn to grow and change with the situation and become more proactive, more helpful. When we talk sometimes he says that he doesn't know what to do to help with my pain or other troubles, but that's not the truth. He knows, because I tell him. I ask for things, I don't just assume that he knows what I need. He just… doesn't wanna do it.

Cheryl and I have been talking about a very wide range of things on this trip and I've gotten to vent about the hurt and frustration I'm feeling in this season of life. It's not just one thing, of course, but a whole kaleidoscope of minor and major stings and slashes and bruises. I'm just trying to make things better. I hope it works. The best thing about our conversations that range all over is that not only are we so much alike but she understands from the chronic illness standpoint as well. Her disease came out of a long remission about 4 or 5 years ago, so she's feeling the sting of losing the normalcy and routine of the life that you lived and maybe loved. I'm going on 3 years and I still have a hard time making heads or tails of it. Yes, Friko, there is more to me than illness, but I just live those parts. I don't need to blog about them because they don't cause me pain, I don't need to sort through the feelings. A lot of who I used to be and what I used to do is gone, though, and I'm trying to figure out what fits in the gap. It hit me like a brick last week to realize how dependent I've been forced to become and that just galls. I was such an independent woman, a "doer", a travel across the country by myself, backpacking, hiking, counseling and administrating, housekeeping, job holding person who could drive herself to the store if she needed to. I can't do any of that anymore. I can hardly cook for myself these days, me who used to cook for our family on a daily basis. I'm a damn good cook, but it's too painful and exhausting for me to pull it off any longer.

So all of that is tumbling around in my mind like a rock polisher hard at work as I face this appointment. I have no idea what to expect, but I know what I'm hoping for. If they can actually definitively tell me what disease I have then logically there will be a course of treatment that will help me to at least stabilize, but hopefully to become functional again. That is what I am looking forward to. I resent my dependence and so does Corey. He's resorted to mechanical functioning and nothing I do can bring him out of his shell. He won't even say "I love you" unless I say it first; it's just a response. He doesn't kiss me, I have to go up and kiss him. It's like he doesn't want to interact with me anymore beyond a superficial basis-- I kiss him and tell him I love him when he goes to work, I kiss him and tell him I'm glad he's home when he comes home (all true, by the way). We'll fix ourselves something to eat, watch a few episodes of whatever show we're watching together, take a walk for half an hour or so, and then he retreats to his man cave to play computer games and I do whatever it is I need to do (sleep, read, slowly accomplish some chores) until it's time to go to bed. He doesn't cuddle with me in bed anymore, either. Lately there's been a teeny bit more of that, but it's because I cuddle him, wrapping an arm around him or entwining our feet like we used to do…

I don't know if it's the truth, but I feel like the health and happiness of our marriage is intrinsically tied to the state of my health. If I can get a good diagnosis and course of treatment, I can get somewhat better. Then Corey won't be as stressed or freaked or whatever he is, and he'll return some closeness, maybe? Hopefully? I'm reminded of a time we were talking about something or other and he said, partially in jest I hope/think, "I don't want to deal with cripples," or some such. I just kind of laughed, patted him on the shoulder and told him, "Sweetie… you're married to one."

I tend to get my hopes too far up in the sky and then bemusedly wander around, dripping with my own blood, when those hopes fracture and come crashing down on me to crush and transfix me. It's kind of a weakness. But is a diagnosis of what is clearly a destructive disease really that big of a dream? I mean… shouldn't it just be kind of a realistic thing to expect from life? And so I welcome you to the times and trials of the chronic illness patient.

(If you want to hear a neat song about high hopes, check out Sinatra's song about high, apple pie in the sky hopes. It's adorable.)

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'll admit it-- sometimes I get really angry at how "easy" other people have it in their lives. I mean, yeah, okay, everyone has their stress and troubles and hard times but some people just seem to have a charmed life, you know? Yes, my incredibly troubled and grueling life is definitely the source of some good points, such as the personal strength, insight, and empathy that I have honed, but sometimes it'd be nice to just have it kinda easy for a while you know? And it hasn't been. My whole life, without exaggeration, has been one fight or another for sustenance, sanity, survival… what's up with that?

And then, just when everything was finally going my way… my health tanks. I was so happy. I was in school, pursuing my dream career, I was planning my wedding, working hard for a cause that I loved with a boss that adored me, I'd paid off my school debt, made huge headway in counseling… I had it made, man. I was good. Things were looking up. But then, then, everything fell apart around me and life is harder than it's ever been. Maybe. Life was really hard during the decade plus of abuse too, though. It's hard to say.

It's just not fair, man. And it pisses me off.

However…

There is good news. I have finally found a doctor that is both willing and able to help me with my pain! I'm diagnosed with "intractable pain" which, according to Wikipedia, is "a severe, constant pain that is not curable by any known means and which causes a bed or house-bound state and early death if not adequately treated, usually with opioids and/or interventional procedures. It is not relieved by ordinary medical, surgical, nursing, or pharmaceutical measures. Unlike the more common chronic pain, it causes adverse biologic affects on the body's cardiovascular, hormone, and neurologic systems." (emphasis mine) Doctors kept getting hung up on "fibromyalgia" and "chronic pain", missing the bigger picture of my pain, but this doctor gets it, and he wants to help me very much. I could cry. It was seriously everything that I had hoped for.

This is the dr's website, Dr. Porcelli. I have to drive 4 hours to get there, but to get my life back? SO worth it.

I was incredibly nervous, because I was afraid that I was just going to get shut down again and I have nowhere else to turn for help but the emergency room, and that is horrendously expensive. (Seriously… I have no idea how I'm going to pay all of the ER bills. *sigh*) He was very cheerful, funny, and engaging right from the get-go, though, and we chatted and joked back and forth the whole time. He looked at my chart and symptom list and was immediately like, "Yes, you definitely suffer from intractable pain! You've got one foot in the grave, huh? Just one banana peel away from packing it in!" (I thought that was funny. This was after he saw the "draw these shapes on this outline of a body to describe what kind of pain you have and where" chart that I filled out. It was pretty well covered in scribbles.) He thinks that with proper pain management I can actually go back to work part time in the future! Also, after a physical examination he discovered that my eyes have been damaged some from the pain, but they will heal when my body calms down.

The plan is to do a long acting opioid with a lower dose one for breakthrough pain. The ones he gave me this month aren't working very well and I'm still spending about 5 or 6 hours a day soaking in the tub, but we can address that at my next appointment. I'm working on getting physical therapy started, trying to do regular massages, and I'm also starting a few supplements (vitamin C, sublingual b12, omega 3 fatty acid, etc.) to boost my general health. I really want to start eating healthier again now that I'm more capable, but really, I'm basically just happy to have meds at all and to know that things are only going to get better from here! I mean, today my friend the Artist came over and helped me clean the house, and I was able to do quite a bit! The house is so tidy now. Ahhhh… we got to things that I've been wanting done for months, or at the very least since I got out of the hospital. It feels good to see my home in order again.

Also, I applied for disability this past Monday, and it was actually a really fun experience thanks to the lady who did my interview. I should get word in about 3 to 6 months, and she says that it's about a 50-50 chance as to whether I'm approved or denied. We'll see. I'm definitely going to appeal if I'm denied, no worries about that.

Oh, and I'm going to make an appointment with a geneticist this next week. Still pursuing further diagnosis, especially since Dr. Porcelli agreed adamantly that while fibro is part of my problem, it is definitely not the entire issue that is causing me to be so sick and in so much pain. So… we shall see. I've got my money on hEDS (Ehlers-Danlos Syndrome, hypermobility type). I fit the criteria so, so, so well, and a large majority of EDSers are either misdiagnosed or not diagnosed at all. The most common misdiagnosis is fibromyalgia, from what I understand.

I'm learning to live with this broken body, even as I try to figure out in what ways exactly it's broken, but it's not easy. I'm pretty resentful at times, especially when I can't get the help or answers I need or when I see my peers traipsing around and fulfilling dreams and stuff that I wanted to do and cannot join in on and will possibly never recover enough to achieve.

Like pregnancy. Due to the nature of my pain, I will probably be on strong pain medication for the rest of my life. That's just a fact of my life. (Ugh, my poor organs…) The implications of that, however, mean that I would have to stop my pain meds (and a couple others) in order to carry a baby, and that's not something that is feasible for me at all. Remember how I ended up in the hospital and ER a ton last month? Yeah. Just like that. And do you think that the stress of being so sick and in so much pain would be good for a developing fetus at all? Not a chance. Either way, my baby is at a distinct disadvantage while residing in my womb.

I'm never going to be able to carry a baby of my own, and that grieves me something awful.

People don't understand. I've shared with a couple of friends, and with Drogo, but the response I get is "Don't worry, you can adopt! There are other options. Have you thought of surrogacy?"

You guys. That's not the point, not the point at ALL! I know I can adopt or do a surrogate pregnancy. Creating offspring is not the issue here, the issue is that I am never going to be able to carry a baby or give birth, and that's something I've wanted for a long, long time. It's just another precious dream ripped callously from my heart and tossed carelessly on the midden. I don't care if I can adopt; I care that the vaunted experience of childbearing, one that I've already had bitter experiences with, is now beyond my grasp, through no fault of my own, and there's nothing I can do about it.

But folks don't seem to catch that, even after I explain, so… I just let it go. Whatever. Who cares if Cassie's world and future is shrinking and dulling, hope and happiness sloughing off like dried up scabs?

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.

Today is the gear-up, preparation day for The Appointments tomorrow.

As I was drifting off to sleep last night, I realized that I am very, very anxious about what is going to transpire tomorrow with the rheumatologist. The psychologist? I could care less. Well, okay, that's not entirely true. The psych will have control over my antidepressant, I'm sure, and that has definitely had an impact on my overall functioning. However, if I were given the choice between my antidepressant and my pain meds… I think we all know which way I'd go. Antidepressants, duh! (I kid, I kid!)

I just… I mean… I'm terrified, y'all. Just so petrified. So, so anxious that my symptoms will be downplayed again, that I'll be told I'm prone to exaggeration again, that my coping mechanisms will be called into question again (without offering any assistance or anything), that my pain won't be taken seriously again, and that it's going to be harder than filling a sieve with Jello to get adequate pain management again, and that I will just end up spending another year getting sicker and sicker and in more and more pain without anyone in the medical community bothering to figure out what's really going on. It's like… this could either be really good or really bad. I'm terrified. I don't know what to expect, but my experience with this stuff so far does not have me exactly resting at ease.

But… I will do my best to come prepared with all the information and documentation that I can to make this as smooth and painless as possible.

Besides gathering all my supplies for tomorrow, I'm hoping to be able to do some more cleaning and tidying of the house. Will that actually happen? I'm uncertain. The pain is pretty persistent and gnawing today, so we'll see. C helped me clean yesterday, mopping the floor after I swept as well as helping me make the bed after I washed all the linens. That has taken a tremendous load off of my mind. I've been bothered by the dirtiness of the floor for weeks now, but unable to do the task myself. Then, of course, I ran out of meds and wasn't doing a damn thing, so mopping was out of the question. Today, I'd like to get the dishes done (since I went through pretty much every single dish while sick, because doing dishes? Hah. Right.) and clean the bathrooms. Dusting would be nice, too, as well as putting away the laundry I did yesterday. If I only get one "cleaning" thing done today, though, it's gotta be the dishes. Well, that and my laundry. How I wish I could do it all in one blazing, glorious, Spring Cleaning type day! To think that I used to HATE the weekends because Mom would want to get all the cleaning that had been put off throughout the week done on Sunday, and of course we were obligated to help. Now I'd give anything to be able to take a day and just clean the house really well. Of course, I try to employ the method that Mom never quite got the hang of, which is tidying up throughout the day and week so it doesn't all pile up and necessitate an all-or-nothing cleaning binge. I'm sure it's harder with kids, but it's also pretty damn hard with chronic pain, too.

So that's the plan for today. Eat, clean, and be merry, for tomorrow I may want to die.

Oh, and quick side note of great importance? The local ren faire is next weekend! Whoop whoop! I'm so excited. I look forward to this all year.

Sometimes it all just comes crashing down on you and you just need to cry. At least, that's how it is for me. Funny thing is, C has this freaky sixth sense and somehow always just knows when I'm crying, no matter how quiet I think I'm being. And he always comes to find me. Once or twice I've been crying while he's asleep and he woke up to wrap his arms around me and cuddle me. He didn't remember it the next day, though, which I find amusing.

So I was crying in the shower/bathtub in the wee hours of the morning because I couldn't sleep due to so. much. pain., and because I was just so frustrated with my health and how out of control I am of so many things (all traceable to the fact that my health has gone down the crapper and there's nothing I can do about that beyond what I'm already doing) and I hate that I'm gaining weight and can't do diddly squat about it and I'm terrified that C will no longer find me attractive and will be unhappy in our marriage and we'll both just be sad and upset and live these lame lives because I'm sick and fat and sad. I know, I know… silly, right? But when you're hurting very badly and it all just seems so frustrating and unfair, logic seems to step outside for some fresh air and a cigarette break.

I got to thinking, though, as I was sniveling away in the tub, that my appearance is so not all there is to me. I thought about my friends and all the good they see in me, and how they're not friends with me because of my rocking cleavage (although that does help, so I'm told) or my fabulous cheekbones. I started to wonder, what would I think about myself if I were someone else meeting me for the first time or getting to know me?

Here's something a new friend of mine sent to me via a private message on Fb. (I hope she doesn't mind my sharing!)
"I just want to tell you that you're absolutely stunning! Your positive energy and the care I can see you have in you for others. I admire it don't pay attention to the numbers on a scale or douchey doctors! It pains me knowing they don't know what's wrong with someone so kind who doesn't deserve all the mayhem your body is putting you through! Keep a smile on you face because someone is always paying attention to it < 3"

If I were getting to know me, I think this is what I would think. I would think that this person is…

• Funny. She laughs a lot and likes to laugh with others, not at them. If something can be made into a joke, she'll go for it, and she often finds little humors in every day things.
• Smart. She is well spoken, well written, has a large vocabulary, and "has a mind like a trap" according to D. She likes to collect obscure tidbits of knowledge and is fascinated by etymology.
• Kind.
• Giving. She loves to give to others in whatever capacity she can, however little it is.
• Compassionate.
• Stubborn.
• Creative.
• Strong and determined. It takes a special kind of person to withstand those levels of pain and still be able to laugh, smile, and care about other people.
• Ambitious. She has big plans for her life and making the world a better place.
• Talkative. Especially during movies.
• Neat and tidy.
• Sensual. Takes pleasure in the signals received by her senses and in things that bring physical pleasure.
• Has a large, bright smile.
• Thoughtful.
• Skilled at many things. Writing, cooking, creating, interpersonal relationships, attracting and entertaining small children, etc.
• Wise. An old soul.
• Open to growth and learning/Teachable. All this, despite being stubborn.
• Emotional. This is not a weakness, and not a shame.
• Highly relational.
• A nature lover.
• Persistent.
• A lover of the aesthetically pleasing. This goes hand in hand with "sensual".
• Exuberant. Often described as "vivacious", "vibrant", and "bubbly".
• Honest. Hopefully tactful as well.
• Committed.
• Good work ethic.
• Sensitive.
• Loving.
• Encouraging.
• A bit clumsy. Minor injuries are inevitable.
• Responsible.
• Too hard on herself.
• Insecure.
• Authentic.
• Eloquent.
• Adventurous.
• Loyal.

Frankly, this sounds like the kind of person that I'd want to be around, and that I'd want in my life in a big way. Like, she sounds amazing…and none of those qualities and quirks and personality traits that make her amazing have anything to do with appearance. None of them. If I knew a person like this (and I do, actually!), they could be "ugly" according to society's current standard of beauty…but they would still be a desirable person. They would radiate an irresistible quality that would make them attractive on such a deep level that the superficial physical traits would resolve themselves into a beauty of their own. Think about it. If someone is just so wonderful and lovely from the inside out, you find things about them that are attractive, do you not? One day while you are sharing a hilarious joke, you notice the curve of their lips and the slight dimple to one side. As they look deep into your eyes while sharing your pain, you notice the rich and intense color that is only enhanced by the sheen of their sympathetic tears. During a hug, you notice the strength of the muscles rippling in their back, the graceful taper of their fingers and the suppleness of wrist as they hold your hand.

People can be beautiful aesthetically, but a flat, displeasing, or grating personhood will strip them of all attractiveness. All that is left is a lovely shell. Useless. That is not me. My aesthetic beauty has changed, to be sure. I know that I am still attractive, but I do not align so closely anymore with the standard of beauty that is vaunted in our culture at this point. I need to come to terms with that, and to realize that it really is not the most important thing. As I look at the list above…what I would see upon meeting myself, getting to know myself…I find myself very attractive indeed. Or rather, I would if I saw those same things in someone else. It is still so hard to be friends with myself! Step by step, though… I'll get there. Why? Because I'm persistent, and loving, and committed, and kind, and...

I found this coat today on a website that I like to browse, dresslily. I'm slowly coming to terms with the fact that most of their products are made for people smaller than I. (I'm still not used to being an XL with a double-digit bosom!) It's a shame, really, because they have some adorable things!

This coat, silly as it is, really appeals to me. I like bright colors and fun, unexpected accents. I love fur trim. I love old-fashioned looking things, and this is reminiscent of the late 19th century to me. Did I ever mention that for most of my childhood my greatest ambition was to be Amish? I used to actually spend hours scheming about how to be taken in by an Amish community, since they're pretty exclusive.  The simplicity, honesty, and hard work of their lifestyle really appealed to me, and it was all cloaked in the romanticism of childhood fancies. The dream died when my mother informed me that all the Amish were allowed to read was the Bible. Being the bookworm that I was and am, this was an unacceptable compromise, so I sadly parted ways with my fondest wish. (I've since learned that this is not true.)

I had a vibrantly sky blue coat while I was at SOULS. I got it at a yard sale put on by the church we were staying at my first summer in MI. It was a pleather trench coat, dappled in shades of sky and pale blue so that it looked like a pleasantly clouded sky. It made me sweat since there was no air flow through that material, but it was certainly handy for rainy days. GM hated it, I later learned, because it didn't match with anything that I owned or wore it with. I am of the opinion that you don't have to match at all, ever, unless you want to. I also firmly believe that coats are exempt from any outfit matching rules and can be whatever color or style you darn well please.

I finally did part with my blue trench coat, but I think back on it with fondness. It was my way of hanging on to my individuality and the sparkle of my persona in an atmosphere that, while not explicitly demanding conformity, encouraged a sort of bland sameness. Once there I didn't have much to work with anymore-- no unnatural hair colors, no jewelry, no crazy haircuts… Just modest shirts, long skirts, and cute flats. To counter that, I wore shawls, blue trench coats, neon sweaters… anything that was still me I clung to in the lukewarm sea of conservativism. I wasn't the only one. JP had his crazy knee-high socks and his sling, BH had a red track suit he wore in off times, LP always maintained her classic, fun style with grace and ease and lovely scarves, and JR would forego the demand for "propriety" in favor of the leafy embrace of the nearest tree.

Over time, though, I even gave up the bright colors, heeding very literally the counsel to not draw attention to oneself through dress or appearance. I regret that now. I entered the world of conservative Christianity during a (long) period of my life when I was struggling to find myself, to figure out who I was without the clutter and debris of friends and hobbies and expectations and excuses. I became what I thought I was supposed to be, but that was a trick I picked up at a very, very young age. If you are what you're supposed to be, act the way you're supposed to act, etc., then you curry favor with those in power and make yourself less likely to be noticed. A handy trick for abusive and dysfunctional situations. It's taken years, though, to shed that habit and slough off the accumulation of personas cultivated over decades.

I'm finally figuring out me, letting my true self shine out bright and bold… and I think the true me would like a coat like this.

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

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

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

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

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

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

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

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

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

Survivor's guilt. Wikipedia says, "Survivor, survivor's, or survivors guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not. It may be found among survivors of combat, natural disasters, epidemics, among the friends and family of those who have committed suicide, and in non-mortal situations such as among those whose colleagues are laid off."

 I think that chronic illness fighters deal with a type of survivor's guilt, though it's not the standard definition. I mean, we have survived a traumatic event in a way, as our illnesses frequently strip away even the vestiges of our former lives, carving us into a hollow shell of what we used to be and planned to be. The guilt, though, lies not in the fact that we have survived and others haven't (in the sense that we lived and they died), but in the sense that we have survived and they haven't had to learn to survive this at all. We feel guilt because we do things differently to survive, and we no longer fit in with the lockstep of "normal" expectations. I feel guilty because I am a survivor, and I do whatever I have to to make it through the day. I feel badly about myself when others around me do not have to take such drastic measures to cope with the daily, minute stressors, when they are able to sally forth into the dawn, skipping meals and losing sleep and still able to put forth energy that comes from some boundless spring. Sure, maybe it's not as boundless as it would be if they properly tended it, but I have to concentrate all of my efforts and planning and foresight into cultivating the same trickle that they get when they carelessly wander through a day.

I feel guilty for surviving on my terms. 

I feel badly about myself when I don't have a concrete answer to hand out to people when they want to know what's wrong with me. I can't adequately combat the well-meant suggestions because I don't know if it would work or why it didn't work when I tried it, because I don't really know what's wrong with me.

What do you say when someone asks if you're feeling better? I smile, I make something up, and I feel guilty. I survive, however I have to.

I take my pain pills, knowing that they're damaging my body and not a long term solution. But what can I do? I went without for less than 24 hours and I was so sick that I could not sleep or eat, in addition to the ripping pain. Even now, I'm on my proper dosage but I've got this ever-increasing migraine pressing down on me. I know that a vanilla coke will go a long way towards setting me to rights, and I know that some folks would disagree, but I'm surviving.

What gets me the most is when I have to make the public appearances, to go out and do stuff, and people see me and think that I feel better. They have no concept of what I mean when I say that "I'm sick a lot. I'm sick right now." They absolutely cannot fathom the levels of energy that I'm losing just by sitting in a crowded room buzzing with conversation. They don't understand how much it takes out of me to sit in a chair and focus my attention on a stage, on the words being said. When I say I'm tired and I want to go home, it's not because I'm bored, or a little fatigued from the day's efforts. No, I mean that it's probably dangerous for me to be driving but I'll do it anyway because I have to. I mean that I'm having a hard time focusing my thoughts on conversation and it is difficult for me to focus my eyes. I mean that my body aches and my stomach is as upset as if I had a stomach virus. I mean that there is a thick, wet blanket between my senses and the world they're supposed to be interpreting. I mean that my pain levels are spiking, and I'm likely employing breathing techniques just to keep from groaning aloud. I mean that I can feel that I am going to be punished for this in not too short a time, and I don't want to be around people when it happens. I don't want them to see me at my weakest; it will just alarm them. I don't want the energy drain that comes from being around people, any people. (Except my husband, oddly enough...) I don't want noise, I don't want conversation... I just want the comfort of silence, my cats, my couch... familiarity. Comfort. Cool quilts against my face. A glass of water at hand, a mug of peppermint tea for my inevitably upset stomach. Dim lights for my aching head.

And so I try to leave before I get to that point... but I feel guilty. I feel guilty because I'm surviving, however I have to. I hate being in that place, the crash after the adrenaline-fueled outing. I'll do what I can to avoid it. And yet, so often... I feel guilty for surviving on my terms.

Why? I know why.

It's because I don't believe myself.

I know my body. I know my pain patterns. I can tell when I'm getting sick, when the pain is spiking, when I NEED another pain killer to stymie the big spike that's coming that kicks off a cycle of uncontrollable, fully body pain. I can tell when I need a nap. I can tell when the autoimmune side of things is flaring. Granted, there's still a lot I don't know, but there is also a lot that I've gotten good at pinpointing. I know when I need to eat. I know when I need to sleep. I know when I need to stop doing an activity. But all too often... I ignore myself.

Why?

Because I minimize. Ohhhh, do I minimize. I catch myself doing it when I do presentations about my abusive past. It wasn't really that bad, if you think about it. I mean, all that happened was... Did that really happen? I think I'm probably exaggerating what happened. It wasn't that big of a deal. I need to just get over it and stop assigning so much importance to little things.

I didn't realize how much I minimize until C and I were discussing some of my symptoms, and he mentioned my need to eat frequently and right. when. I'm. hungry. If I delay, I get very ill. He's seen it. It's not a secret. It's something I've been dealing with since my teen years at least, and it's just one of those things that we work around in every day life. And yet hearing him describe what happens to me when I get sick from lack of food, well... it was... empowering. It was like a light bulb went on in my head and I thought, "Aha! It's real! I really do get sick! I get very sick, and someone else has seen it! Wow... that sounds terrible. That's kind of a big deal. Huh."

I had a big tussle with minimizing after my rheum blatantly stated (twice) that she didn't see the need for me to be using my walker. I came away seriously questioning myself in many aspects, wondering if I've been wrong and just exaggerating my symptoms all along... if I can really trust myself to know when and if I need something... because, after all, she's a doctor, so she must know, right? I felt guilty for surviving. C tried to put that to rest, assuring me that I use it and my pain meds wisely and judiciously, and that I know my body. He stated emphatically that I am not a wimp or a complainer (which is a great fear of mine-- perish the thought that I should ever become a weak, dependent, whiny loser like G!), and that I know myself. I know what I need to do, and I do it, and the doctor can go fuck herself. I'm inclined to agree... when I'm thinking straight.

My emotions and the self-talk going on in my head tend to get all tangled up in a tangly ball of tangledness, and it gets messy up in there. One of these days soon, I want to draw up a list of "what I tell myself" and "what is, a.k.a. the reality of the situation". Kind of like a cross-referencing chart, you know? So that when I begin to tell myself a certain thing, I can look at the chart and say, "Nuh-uh, that's not how it REALLY is!" Then I can follow that up with the truth. I'm excited for that. I just don't have it in me to create that right now.

I went to an awards ceremony for contributors to the local community because I nominated THJ as non-profit of the year, and we made the cut into the final category! We didn't win, but we still got an award for making it into the nominees. One of our volunteers was also nominated for Volunteer of the Year, so she got an award too. It was a fun chance to dress up and meet a lot of important people, but I'm still getting over being so sick yesterday and I was drained and ready to go home by the time the mingling hour was done. By the time I left I felt pretty bad, and I am definitely being punished for my outing. But you know what? It was worth it. I have some thoughts on my boss's own chronic illness and pain and how that helps/hinders our working relationship and friendship, but now's not the time. This is long enough already. However, I'm not working tomorrow because I did tonight, and that's a whole 'nother load of guilt. She's all sick and in pain too, but she works herself into the ground from her home office... while I'm at home, lying on the couch. I'm sick, she's sick, but she's the one doing so much work... and I feel guilty for surviving however I must. But I must remember that working myself into the ground and possibly ending up hospitalized doesn't do either of us any good. I'm trying to cope long-term, here... trying to survive in length. But oh, the guilt...

I know it's there. I know partially why it's there, even. But what I haven't figured out yet is how to be rid of it. I think that chart would help. I need to set the Should Monster straight again. It's been too long.

Laid a little low with the fibro flu today. Low fever, enough nausea to be annoying and make me feel generally gross, and a lovely little headache flitting about my cranium... plus the usual back spasms, chest pain, and gut twisting. I'm glad I don't have to go anywhere today!

 I saw a great idea on fb via Chronically Creative (I think. Can't remember. Blame it on the fog.), and that was to create a pretty "slide" listing my accomplishments for the week. It's so easy to look back at my day, or my week, and think to myself, "What did I accomplish? Did I do anything? No. I didn't. What a waste." And that, of course, is negative self-talk, which exacerbates any depression that may be lurking over my shoulder. (Depression is like a Gremlin, you know... except you shouldn't feed it ever. And don't get it wet. Though I'm not sure how that would even apply in a metaphorical sense.)

So I'm setting a goal for myself, to help keep myself accountable in speaking love and affirmation to myself, rather than criticism. I've let that slide a lot lately... it just takes so much energy to be kind to yourself when it's not familiar, and the negative, snarky, demeaning things seem so much more true when you're compromised in the way that my illnesses have compromised me.

My goal is this: every day, I will enter my accomplishments into the slide format, and when a week has been completed, I will share that picture on this blog. No matter how big or little the accomplishments, I will show myself with undeniable proof that I am not worthless, useless, or a vegetable. I am a fighter, dammit, and I fight every day. I win victories every day. It's time I started to recognize that!

The world shall tremble before the might and tenacity of the Fibro Princess Warrior, the Chick with a Stick! (Well, my internal world, that is. ^_^)

I'm getting that question a lot lately. It makes sense, really, because we're only 5 days away from the wedding.

But the answer is not a simple, "Yes." I don't really know what to say when people ask me that, so I just go with the simple, "Yeah, I'm super stoked!" so I don't have to explain myself.

I mean, it's not that I'm not excited, it just... kinda comes in bursts.

Now, going to the Ren Faire? That was exciting. I was really, really looking forward to that one in the jiggling-in-my-seat-tingling-in-my-stomach way, and I could hardly wait for the day to come. Maybe that's what I'm expecting "excited" to feel like for the wedding, but it's just not there.

I'm looking forward to the reception, because it will be beautiful.

I'm nervous yet happily anticipatory about the song I'm going to surprise C with.

I'm elated to see my family and friends again!

And I am definitely calm and satisfied with the prospect of saying my vows and exchanging rings with the man that I love so dearly, becoming his wife.

But I don't have butterflies, and I'm not jiggling in my seat.

Maybe it's because I planned this. It's like planning a birthday party for yourself. It's really not that exciting. Pleasant, sure. Fun? No doubt. But exciting? Not so much. Exciting is planning a surprise for someone else. Exciting is taking a trip to the Ren Faire and just letting the day happen without having it all planned out to the minute, like the wedding is planned. Exciting is anticipating the faces of my grandparents when they see Peanut for the first time.

So am I excited? Um, sure. Really, though, I'm just going to be relieved once it's over and I'm a wife.

It'll be a fun party, but there are too many moving parts for me to get really, really excited about it. I'm more excited about the wedding night... ;)

(Because of the place my health is at this week, I'm postponing my surprise for C until the official honeymoon weekend. I will, however, still have a lovely surprise for him... and that I'm excited about.)

Rolled out of bed this morning bright and early (like, 1 1/2 hours earlier than normal!) and guess what? I haven't had to take a pain killer yet.

I mean sure, I don't feel like jumping up and doing a table dance, but it has literally been months since I did not need to take a pain killer upon rising.

Today looks to be a very long and busy day for me, so I'm grateful for the gift of diminished pain.

I know that I'll be taking one later, of course. I can feel the pain levels rising the longer I'm awake, which is normal (tongue in cheek), but, still... Almost an hour awake with no tramadol? Whoopee!!

I've got a free massage in 20 minutes that I must go get dressed for :)

Side notes: I wonder if my falling pain levels of the past few days are due to the increase in gabapentin?  Or possibly Savella?

Also, yesterday I was out and about without my walker! There was pain, and at times I almost wished that I had it, but I made it the whole day without :)

I think the frequent massages are contributing to the pain levels falling, as well.

Update: Yes, well, *ahem*... I was rather pain-free! Unfortunately, I did overdo it a little during yoga... Okay, maybe more than a little... But I was trying to be aware and be good to myself! I really was. It wasn't until it was too late that I realized I had done much too much in the realm of movement and exertion. Alas.

So I did end up taking a pain killer, and I busted out the walker. (Which, by the way, was noticed and commented upon by a stranger in a positive manner! We had a fun little conversation. She was very empathetic, not because she personally knows someone with a chronic illness, but because she went to medical school.) Howeverrrrr... it is now 9 p.m., and I've only taken one tramadol today! Whooooeeeee!

Okay, see, here's the deal... I tend to black-and-white generalize things, especially myself. Example? When I had gotten to 6 hours between pain killers, I assumed that was my new norm. When I had to go back to 3 or 4 hours, I was tempted to be devastated. I had failed. I had broken down and ruined my positive forward progress. But you know what today showed me? Every single day is unique. I can't expect that just because I didn't need a pain killer this morning I won't need one tomorrow. I cannot, cannot, cannot say what tomorrow will be like, so I just gotta take it as it is and roll with it.

Mindfulness. Being present here and now. One moment at a time.

And today, when I realized I'd overdone it? I was overwhelmed with disappointment in myself, initially. I really was so disappointed that I'd now need a painkiller, because I had intended to go the whole day, if possible, without one.

But I stopped and talked to myself kindly, and basically I chose to celebrate the success of having made it that far in the day without a painkiller or the walker, rather than dwelling on the "failure".

It's kinda funny, too, how my mind works... this morning, feeling pretty good, I began to worry if my feeling better somehow negated my past sufferings. Like... was I ever really sick? Was it all in my head after all? Because I feel good, sooooo... maybe it doesn't count? Maybe I was exaggerating?

Yeah, no.

I still can't hit the ground running at a thousand miles an hour.

It does make me wonder, though, what life will be like as I continue to heal and find balance... I know I don't have to worry about it until I get there, but I'm wondering about coping with the dichotomy of "good one day, bad another", you know? I mean, I know I've been there before with my guts and all, but this is a whole new monkey to wrestle.

I am too black and white, all or nothing. I know this. If I feel good, I should always feel good. If I feel bad, I'll always feel bad. Any break the pattern is cause for alarm! lol

I'm going to go cut out hearts for the wedding, now. The flower boy will be tossing 8 bit hearts instead of flower petals, and then he'll hand C a laminated 8 bit heart that says, "Marry me?" (I'm including that because, since C proposed, I frequently ask him to marry me. He always says yes. ^_^)

(See? 'Cause we're nerds, and I love Legend of Zelda.)

I had my first class today.

Welcome, new semester!

More specifically, I had my first yoga class today.

I was dubious about my ability to really participate today, as last night was a rough night. I went to bed a few hours earlier than normal (or what's become my normal, heh), but I didn't end up falling asleep until just after my normal bedtime due to pain. I finally broke down and took the one painkiller mom gave me from her stash the hospital gave her, but I didn't feel that it did anything... except maybe knock me out for a while? After 3 hours I was awake again, needing to eat and still in pain. I took care of that and was able to fall back asleep, but by the time I had to crawl out of bed to get to class on time I was still sooooo tired! And in pain. All over.

So, as you see, I was dubious. To say the least.

However, the teacher advocates an interesting philosophy, one that had me going, "Aha! I knew I was meant to be here!" It was like a message from God/the universe/my dead auntie/whatever. (I don't think I actually have a dead auntie, come to think of it...)

She emphasized "honoring your practice". What does that mean? Well, she explained during various parts of the session that every day is different-- our balance will be different, our energy levels, our mental state, etc. We need to acknowledge where we are that day, accept it, and work within those limits. Can I hold a position a certain day but not another? That's okay. I need to listen to my body and honor what it is saying to me, to find the balance that is right for me, no matter what anyone else in the class is doing. If the teacher takes us from a forward fold to a floor sit but I feel that I need to hold the fold for a few more seconds, then I need to hold the fold for a few more seconds. If we're sitting in a certain pose but my body is saying "No way!", then I need to adjust and find a way to honor my practice.

It is precisely that type of theory that I am trying to put into practice in my every day life. For me, every day is different in so many aspects-- pain levels, energy levels, nausea levels, emotional state, things to accomplish... Every day has its own balance. I need to honor my practice and find the balance within each and every day, within every moment. It doesn't matter what anyone else is doing or saying. I need to find my balance and honor what I am telling myself. I need to trust myself.

This dovetails perfectly with what I was learning in my last round of counseling about unreasonable expectations and being kind to myself.

I'm really glad that I chose to take this class. Did it hurt? Heck yes! I tried not to push myself too hard, but I was pleasantly surprised to see that I was able to keep up. My physical sense of balance is better than I thought it was, which was gratifying.

I am looking forward to continuing to learn and apply this practice of honoring my practice, both in and out of class.

(One problem, though... despite the pain, I'm so relaxed after class that it's hard to function! lol A good problem to have, I suppose...)

Today was kind of a tough day there for a while. My counselor has me being very aware of my self-talk, and keeping an eye on my cycle of depression, so I'll be using this here little place to keep track of that, if I can think of it.

Anyway, I had fully intended to use today to whip out my homework and to get that website done, and I wanted to get it done right off the bat, right?

Well, ended up staying up late with my darling last night, which was nice and all, but... eight hours of sleep later, I woke up later than I had wanted. Okay, no big deal. I headed over and took care of the dogs, then came back home to achieve my goals for the day. (After all, I had done my housework yesterday, so there should be nothing stopping me, right?)

Except roomie S and his friend (my friend too, now I guess... friend-by-proxy) A were here, and A wanted me to braid her hair. After a quick lunch, I did, but it ate up a lot of time. By the time I finished with her and they left for the college, it was already mid-afternoon. At this point, I had to go back to the dogs again, but I took my homework with me. I got one subject done before the guy across the street's really annoying sub-bass booming music gave me a pounding headache (like that stuff always does), and there was no way I could concentrate on algebra. In the process of putting all the critters in their proper places so I could leave, the cat ripped a hole in my tie-dye shirt, and that seriously blackened my mood. (The shirt I made during my hippie birthday. And it's right in the middle, so there's no hiding it.)

On the drive home, I was seriously in a funk. Anxious. Irritable. Stressing. Upset.

Fortunately, my Voice of Reason chose that time to begin talking quietly and compassionately to me.

What are you so upset over? Yes, yes, I understand the shirt. But you were upset before that. Do you realize that you are freaking out over self-imposed deadlines? Neither of those things are due today, you know. You had this rigid idea of what your day should look like, and then when something else showed up, you freaked out. Why so rigid? That's not healthy, dear. Go with the flow. Roll with it. It's okay. Things happen. It's life. This is going to happen again. Learn from this.

Yeah, okay. You're right, Reason. But I still feel out of sorts and stressed. What do I do?

Okay, here's what. Go home, make a cup of tea, and do that mindful breathing exercise that your counselor recommended. Then you'll be calm and collected, and you can take care of your homework from a clear mind.

Yeah... okay. Tea. Breathing. Got it.

And that breathing exercise was great. I think it will help me to not be so judgmental of myself... more mindful. More present. Calmer.

I hope.

Anyway, I'm still in a funny place, physically, because my stomach is flipping out. Per usual. But, hey, whatevs.

I feel better, emotionally.

Oh, and did I mention that my sis is going into labor?!