Guess what, y'all? It's National Invisible Illness Awareness Week! I'm about half a week late on this, because, guess what else? Yeah, that's right-- I was busy being sick with my invisible illnesses ;) Funny how that works, ain't it?

Anyway, I'll be catching up with a few little things here and there that other bloggers are doing to 'celebrate' this week and to bring awareness to invisible illnesses and what life with them is like, but for now, all I've got is a post from my other blog, the more public one, that gives a little insight into what life is like for the invisibly ill. It's hard to deal with diseases that no one can see, and ones that aren't main-stream, popularly accepted diseases like cancer or ALS or autism. ALS and autism have some symptoms that are on the more visible side, but for the most part they suffer in relative anonymity.

When you have an invisible illness, it's easy to judge and be judged. "But you don't look sick!" I know, I know. In fact, I look pretty good, if you discount the weight gain. (Some would even say that I look better now, with the extra weight and curves, than I did before!) But the suffering is just as real, just as valid, as someone with a broken leg or a shattered spine. My disability is just as devastating and pervasive as anything else you can think of, but I don't have the "legitimacy" of a cast or an IV pole or something tangible that signals I've got a terrible reality squatting on my shoulder at all times. I suppose that I'm "lucky" in that I need my walker, the Bling Chariot, to get around outdoors because it lends me an air of disability that wouldn't be there if I simply limped around and sat whenever I got the chance. People often ask me if I've had surgery or injured my leg somehow, though. When you see an otherwise healthy looking young woman your first thought will probably not be, "I wonder if she is dealing with crippling physical symptoms that have totally devastated her ability to participate in society in a regular manner?" I think that now, when I see people with a particular gait or look on their face. I watch people much more closely now, and I understand a bit more than I did previously, but here's the thing: until you or someone you love has experienced something, you just aren't going to think about it. You don't know, you don't know a damn thing, and you really can't. And you know what? That's okay. That's okay because how could you possibly, unless someone explains it to you?

That's the whole point of Awareness Weeks. People don't know, they don't understand, because it's not visible and it's not obvious and if you haven't had experience with it you could never, ever guess what it's like and what we face. I didn't know. I'd never heard of fibromyalgia or chronic pain or connective tissue disease or Addison's or thyroiditis until they all happened to me. Food allergies I'd heard of, in passing, but I didn't know anything about them until I was forced to, for my own survival. I was told by a doctor yesterday that I am one of the most well-educated patients she's met, and though it's not the first time I've been told that by a medical professional it always shocks me. Shouldn't at least the people who have the diseases care? Shouldn't they want to know, to learn, to be as in control of these crazy diseases as you can via knowledge? But apparently many choose the path of ignorance, even when their very own body is on the line.

In closing, I can tell you that some of the most moving and profoundly meaningful things I've heard since I got sick came from family and friends who have told me that when they learned the name of what I have, they went and researched to understand it better, to understand me and my new reality better. My friend, The Artist, shares stories with me about how she defends me to friends of hers that see my comments and posts on Facebook through her account and question the veracity and legitimacy of my claims. Am I faking it for attention? Exaggerating? Fibromyalgia is just a "throw away" diagnosis; it means the doctors don't know what it is and they tell you that to keep you happy. She's probably not as sick as she claims to be. And so on. But this girl stands up for me, she calls these friends of hers out, and she shares what she's learned from me and from her own research and she shuts those kids the hell up! And it melts my heart with gratitude and something more, every time. It reaffirms my value as a person, as a friend, and her trust in me and the self that I present to the world. In short, her bringing awareness to others on my behalf validates me entirely, and our friendship to boot. It totally almost makes me cry every time I hear about it.

Personally, I think that's how awareness spreads the best-- through the personal connections. I am not going to stop sharing the hell out of articles and pictures and blog posts on Facebook, but it's the personal connection I have with my friends that makes them want to read the articles, to learn more, and to pass on the information to others when they hear ill-informed opinions being bandied about. Truthfully… I'm super humbled by the friends that have stepped forward to be by my side for this lifelong fight I'm enlisted in. There's no way, absolutely no friggin' way, that I could do this well in isolation.

With that in mind, happy National Invisible Illness Awareness Week! May our friendships and relationships be sturdy and true, and may they lead to greater awareness in others… and within ourselves.

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.

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

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

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

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

What.

the.

fuck.

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Dear Dr. L,

I feel as though there are some things that need to be clarified that have been impairing the
effectiveness of our doctor-patient relationship. I am open to the fact that I may have misunderstood
things, and that you may have been working with thoughts and motivations completely unrealized by me. If that is the case, I apologize. However, I do not feel that maintaining my business with this
practice is in my best interest as a patient. In the past year that I have been a patient of yours,
my overall health and subsequent quality of life has decreased to such a point as to be laughable, if
one were not too busy crying and pitying me. Despite seeing me regularly through this time, the
records of my visits routinely note that "the patient has no difficulty performing daily activities",
despite my consistent and frequent protestations to the contrary.

My husband brought up a very poignant illustration of just how far my health has deteriorated. This
time last year I could almost hike to the top of Telegraph Pass, he said. Now, I'd be lucky to make
it out of the desert parking lot and up to the trail before having to turn back from pain, fatigue,
and general weakness. I have continually emphasized how regular, normal activities are becoming harder and harder for me to perform to the point that I am at the point of almost total debilitation, yet I do not feel that I am being taken seriously. Perhaps the blame lies with me in not being clear enough
about the severity, frequency, and variety of my symptoms, but the sense I get is that I'm being
dismissed. It's like if I come in and say, "Oh, my sickness is at a level 7. It's debilitating, it's
ruining my life," you take it as my sickness is really only at a level 4 and I'm not really that
impaired. I even brought in that "FMS Rating Scale" in an attempt to get you to understand the
severity of my pain and other symptoms.

The short period of time that I was using prescription pain killers in excess was a desperate attempt
to to control and somehow manage this pain; to get back to a somewhat normal standard of living. I
have, I thought, been very clear about the profuse, intense, and increasing amount of symptoms that I
have to deal with, and the disability that has come as a result. I feel that not only is my sickness
not being taken seriously enough, but I feel that the measures I am taking to cope are being
dismissed as exaggerative, such as the need for further pain control or for mobility assistance
devices like my walker. I am not sure how you were unaware of my having it until now, as I've brought it to several appointments with me, and I have had it since last December. I bought it for the plane trip back to W to visit my folks. I knew that I did not have the physical endurance to both walk
through the terminals and carry my bags without becoming so ill as to be rendered immobile. The cold of a W winter, and the fact that I was not yet on pain killers, forced me to use it for mobility's
sake while I was there, as I could not walk normally due to pain. (This was back when the pain was
localized mostly in my lower half.) When I got back home, I didn't use it for a while, feeling that I
did not need it for basic mobility. After a time, I began using it when I knew that I would be
standing or walking for a long period of time, and the pain from that would make moving very
difficult. It was also handy for the fatigue that accompanied long periods of walking or standing. As
time went on, my pain increased and my endurance decreased, and I began to use the walker more and more. My husband got me the walking stick that I think you remember so that I would not have to cart the walker around and endure the stigma of a young woman with a walker (no matter now neatly
decorated), but that way I still had something to help with mobility issues due to pain and fatigue.

That worked well, until recently the pain in my hands became so great that using the stick is out of
the question, and I have come to rely solely on the walker as my means of mobility aid. I explained
to you at the last appointment that I use the walker to help with balance, to help me walk when pain
affects my mobility, and to provide a resting place when fatigue/nausea/lightheadedness overwhelm me, which is frequently. My endurance is at the lowest it's been, and a simple grocery shopping trip of half an hour requires several rests, sometimes ending in my husband or a friend wheeling me around on the walker like it's a wheelchair because I am too sick or in too much pain to walk myself. That happens more often than I'd care for it to... as in, it happens on a regular basis.

Another concern of mine, beyond not being heard and/or dismissed is what would appear to me to be
false reports in my records. In the "Rheumatologic Exam" section of each appointment, results for
various examinations are listed as though the exams were performed at every appointment when this has not been the case. I recall only 3 appointments at most in the entire year that I have been seeing
you that I have been touched or manipulated in some way for an exam; certainly not at every single
appointment. It troubles me that at every appointment my joint and flexor tendon examinations have
results reading "Normal exam", yet I was never examined. The trigger point examination notes diffuse trigger points throughout, but I am not re-examined for this (though it's true). Also, I noticed on my chart that I have an assessment of "fatigue with polyarthritis". Why has polyarthritis never been mentioned to me, and why are we not addressing it if it has been determined that this is an illness I'm dealing with? You have seen my health declining rapidly over the past year, yet it would appear that an apparent lead to managing my symptoms is being ignored. I need an explanation on this. Even my general practitioner, whom I saw recently, is alarmed that no further diagnostic action is being taken given the decline of my health and the elevated titers that sent me to your office in the first place.

I do feel a little more as though you appreciate what I'm telling you with the hand x-ray and
ultrasound that was ordered, but this seems to me to be the first decisive action towards further
exploration of my condition in a long while. I understand that the diagnostic process takes time,
especially with the types of diseases that often mimic one another, but surely there must be a more
aggressive manner to pursue diagnoses? I feel that the symptoms that I bring up are casually
acknowledged and then dismissed. You sprang into action when I mentioned hand pain, but what about the insane spinal pain that I've been telling you about for several visits? It concerns me, but it is
not even mentioned in the notes. The fact that I have recurrent fevers and sores of the scalp, mouth,
and nose seem to be of little to no consequence to you. That you note that I "insist" that certain
symptoms are related to autoimmune diseases makes me feel like I'm seen as some patient who decided she had something she found off of WebMD, not to be taken seriously. My general practitioner affirmed my inherent understanding of my body and the autoimmune connection right away, and while she corrected me on some points I still felt heard, understood, and that she was taking action on my behalf and had my well-being in mind, which I am hard-pressed to say about the care I have been receiving here.

My husband made an extremely valuable point, though, which is that when you see me, I am at my
"best". I'm out and about, I'm dressed, I've got my makeup on, and I'm running on adrenaline to make
it through being out of the house. You see me when I'm "okay". I'm sitting up, smiling, talking,
cracking jokes... it seems that I'm doing okay. But you don't see the aftermath. You don't get to see
that I barely make the drive back home and then crash on the couch for the rest of the day. You don't
get to see the pain spike because I used my energy reserves for the day at that one appointment, or
the fever that comes with overexertion (or for no reason at all!), or the nausea and dizziness that
keep me prone even if I weren't so bone-tired and wracked with pain. You don't see any of that. You
see a relatively happy, healthy looking girl who wanders in with a walker. So I see why you might not
be taking me as seriously as you ought to.

If we do end up working together again in the future, I want you to take me seriously when I tell you
that I am seriously impaired and that I live with devastating pain on a daily basis that is not
adequately controlled by pain medication or the alternate coping methods I employ. I need you to
understand that I am worsening over time, not getting better, that I am alarmed by the rapidity and
severity of my symptom development, I worry that I will be completely disabled in the near future and that my life has literally been ruined by whatever is going on with me. I want you to understand that while it's easy for you to listen to my litany of problems and then wave me out the door, I have to
live with every single one of them, every moment of every day. Nothing we have tried so far has made any of it go away. I want you to realize, truly realize, that I am becoming increasingly desperate
and unsatisfied with my quality of life, and that depression is becoming a major problem for me. This
is why I am seeking help elsewhere.

Dear Dr. L,

I want to take this time to clarify a few things that I feel are impairing the effectiveness of our doctor-patient relationship. I am completely open to the possibility that I may be misconstruing events and that you intended to convey a totally different sense of things. I would like to check if this is the case so that we can better work together to identify and manage my illnesses.

First off, you should know that I read the records I received to pass on to Dr. M, and I have them in my possession since the doctor was unable to receive me as a patient. This means that any references I make to my records are direct quotes, and not subjective memories or impressions.

I admit that I was greatly distraught upon review of my records, as I feel that there have been some serious oversights and miscommunications. (Also, I had allowed myself to raise my hopes in regards to seeing a pain specialist, so being denied that opportunity-- again-- really threw me into a state of heightened emotion.) In the "Rheumatologic Exam" section of each appointment, results for various examinations are listed as though the exams were performed at every appointment when this has not been the case. I recall only 3 appointments at most in the entire year that I have been seeing you that I have been touched or manipulated in some way for an exam; certainly not at every single appointment. It troublese me that at every appointment my joint and flexor tendon examinations have results reading "Normal exam", yet I was never examined. The trigger point examination notes diffuse trigger points throughout, but I am not re-examined for this (though it's true). Also, I noticed on my chart that I have an assessment of "fatigue with polyarthritis". Why has polyarthritis never been mentioned to me, and why are we not addressing it if it has been determined that this is an illness I'm dealing with? You have seen my health declining rapidly over the past year, yet it would appear that an apparent lead to managing my symptoms is being ignored. I need an explanation on this.

This brings me to my next, most sensitive, point. It is very clear to anyone in even basic consistent contact with me that my health has declined noticeably and rapidly within the past year. I know that we are taking steps to arrest this downward slide, yet I do not feel that I am being taken seriously. Perhaps the blame lies with me in not being clear enough about the severity, frequency, and variety of my symptoms, but the sense I get is that I'm being dismissed. It's like if I come in and say, "Oh, my sickness is at a level 7. It's debilitating, it's ruining my life," you take it as my sickness is really only at a level 4 and I'm not really that impaired. Remember the "FMS rating scale" that I brought in to show you how low my level of functioning was? I was trying to get you to understand how low my basic level of functioning had fallen, yet in that appointment's notes and almost every one following (with the exception of the last appt) it is noted that the "patient has no difficulties performing daily activities" despite my repeated testimonies to the contrary. I have tried to impress on you the extreme levels of pain that I am in by the hour, the minute, the day. I have been open about my excessive use of pain killers in the past, which was a desperate attempt to control and somehow evade this pain; to get back to a somewhat normal standard of living. I have, I thought, been very clear about the profuse, intense, and increasing amount of symptoms that I have to deal with, and the disability that has come as a result. I feel that not only is my sickness not being taken seriously enough, but I feel that the measures I am taking to cope are being dismissed as exaggerative.

A perfect example is my walker, the "Bling Chariot". (Or, as my brother calls it, "Walker, Texas Ranger". Or, as the lab techs call it, "Luke Skywalker".) I am not sure how you were unaware of my having it until now, as I've brought it to several appointments with me, and I have had it since last December. I bought it for the plane trip back to W to visit my folks. I knew that I did not have the physical endurance to both walk through the terminals and carry my bags without becoming so ill as to be rendered immobile. The cold of a W winter, and the fact that I was not yet on pain killers, forced me to use it for mobility's sake while I was there, as I could not walk normally due to pain. (This was back when the pain was localized mostly in my lower half.) When I got back home, I didn't use it for a while, feeling that I did not need it for basic mobility. After a time, I began using it when I knew that I would be standing or walking for a long period of time, and the pain from that would make moving very difficult. It was also handy for the fatigue that accompanied long periods of walking or standing. As time went on, my pain increased and my endurance decreased, and I began to use the walker more and more. My husband got me the walking stick that I think you remember so that I would not have to cart the walker around and endure the stigma of a young woman with a walker (no matter now neatly decorated), but that way I still had something to help with mobility issues due to pain and fatigue.

That worked well, until recently the pain in my hands became so great that using the stick is out of the question, and I have come to rely solely on the walker as my means of mobility aid. I explained to you at the last appointment that I use the walker to help with balance, to help me walk when pain affects my mobility, and to provide a resting place when fatigue/nausea/lightheadedness overwhelm me, which is frequently. My endurance is at the lowest it's been, and a simple grocery shopping trip of half an hour requires several rests, sometimes ending in my husband or a friend wheeling me around on the walker like it's a wheelchair because I am too sick or in too much pain to walk myself. That happens more often than I'd care for it to. I explained this to you, and in the notes for that appointment you wrote, "The patient requires walker for mobility states she has had this since 12/12, but this is the first that I have known about. Uses it for fatigue, pain, dizziness, tremors." I see that you listened to me, which is awesome, but I got the sense from the appointment (and from the notes, though I was emotional at the time of reading the notes and have since decided that I was putting the wrong meaning into that part) that you think I'm exaggerating. As you put it, you consider it to be "a crutch". (In reality, though, that's what it is, right? Because a crutch is a tool to help you be mobile when you would otherwise be immobile, so... in that sense, it is a crutch.) In short, I feel demeaned, not taken seriously.

I feel that way with my treatment as a whole, frankly. It appears to me as though you are taking me seriously, so you are not seriously pursuing the root issues of what is causing my pain and distress. I do feel a little more as though you appreciate what I'm telling you with the hand x-ray and ultrasound that was ordered, but this seems to me to be the first decisive action towards further exploration of my condition in a long while. I understand that the diagnostic process takes time, especially with the types of diseases that often mimic one another, but surely there must be a more aggressive manner to pursue diagnoses? I feel that the symptoms that I bring up are casually acknowledged and then dismissed. You sprang into action when I mentioned hand pain, but what about the insane spinal pain that I've been telling you about for several visits? That concerns me, but it is not even mentioned in the notes. The fact that I have recurrent fevers and sores of the scalp, mouth, and nose seem to be of little to no consequence to you. That you note that I "insist" that certain symptoms are related to autoimmune diseases makes me feel like I'm seen as some patient who decided she had something she found off of WebMD, not to be taken seriously. My general practitioner affirmed my inherent understanding of my body right away, and while she corrected me on some points, I still felt heard, understood, and that she was taking action on my behalf and had my well-being in mind.

I want you to take me seriously when I tell you that I am seriously impaired, that I live with devastating pain on a daily basis that is not adequately controlled by pain medication or the alternate coping methods I employ, that I am worsening over time, that I am alarmed by the rapidity and severity of my symptom development and I worry that I will be completely disabled in the near future, and that my life has literally been ruined by whatever is going on with me. I want you to understand that while it's easy for you to listen to my litany of problems and then wave me out the door, I have to live with every single one of them, every moment of every day. Nothing we have tried so far has made any of it go away. I want you to realize, truly realize, that I am becoming increasingly desperate and unsatisfied with my quality of life, and that depression is becoming a major problem for me.

While discussing this situation with my husband, he assured me that I am not a pansy, and that I'm not an exaggerator. If I say it hurts, that's because it hurts. I'm not the type to stub my toe or come down with a headache and need the rest of the day off. He reminded me that I am more in tune with my body than the average person, and I have a good grasp on what I need to do to make life work for me as well as possible. Regarding the walker, he stated that I know when and if I need the walker, and I use it. I don't rely on it unnecessarily. I trust his assessment of the situation, as he sees it with more clarity and less emotional involvement than I do, and he also sees the impact of my sickness from a different vantage point. He knows whether I actually need the walker or not. He sees me resting for an hour or more after doing a sinkful of dishes. He sees me curled up on the couch, day after day, because I am too overwhelmed with pain, nausea, and fatigue to be upright and mobile. He also played devil's advocate and made an extremely salient point, which will be my last.

My husband pointed out that when you see me, I am at my "best". I'm out and about, I'm dressed, I've got my makeup on, and I'm running on adrenaline to make it through being out of the house. You see me when I'm "okay". I'm sitting up, smiling, talking, cracking jokes... it seems that I'm doing okay. But you don't see the aftermath. You don't get to see that I barely make the drive back home and then crash on the couch for the rest of the day. You don't get to see the pain spike because I used my energy reserves for the day at that one appointment, or the fever that comes with overexertion, or the nausea and dizziness that keep me prone even if I weren't so bone-tired and wracked with pain. You don't see any of that. You see a relatively happy, healthy looking girl who wanders in with a walker. So I see why you might not be taking me as seriously as I wish that you would.

This isn't an ultimatum. This is a cry for help. I asked you in the past to help me, please help me, and you said that you would. So please... help me. I want my life back. I don't want to live this way. I hate it. I want to be a real person again, with a social life and my old hobbies and the ability to contribute to my household's budget. I want to find out what's going on, what's really going on, why I'm so sick, so I can do everything in my power to control it.

Please, correct me if I have gotten the wrong impression anywhere. I would like nothing more than for our working relationship to be strong and productive, and I apologize if I offended you in any way.

Sincerely,

Cassandra

My hands are stiff and hurting a little today, and my shoulders are absolutely killing me, so I'll keep this brief.

I talked to my madre this morning for quite some time. It was great! I miss her. She also helped me to sort through something that has really been affecting me since it came up (more on that later), and told me humorous anecdotes about the pigs on her boyfriend's pig farm.There's one pig that she named Sugar, so when she gets pregnant and has babies we're going to call them SugarBabies. My suggestion was Sugar Cubes, which led to the thought of naming each one after a different type of sugar, like Granulated, Powdered, Dark Brown, Light Brown, Cane, etc. We had a good laugh over that one.

I saw my rheumatologist today. She was not happy to see my walker, but I've brought it in before and it seems she didn't notice it then. She said that she feels it's "a crutch" (it's a walker, silly! kidding...), but I told her that I see it as a valuable tool and explained why and how I use it, and she was satisfied. After going over my developing symptoms, she told me that we need to be sure of what it is we're treating. The pain in my hands and feet caused her to re-order some tests after poking, prodding, and rotating me for a bit, because fibro doesn't follow this path of development she says. So I may be dealing with an entirely different beast, which wouldn't surprise me. A lot of these things have overlapping symptoms that mimic one another. I see her again in a month, so I'll know more then. Also, I got a referral to a pain specialist! She found the only one here in town that takes my insurance and is accepting patients, so she's getting me in. I could kiss her. She also changed my pain killers from hydrocodone to oxycodone, which is Percocet. I was on that briefly after the big accident, and I remember that it metabolized well with me, so I'm hopeful. I made it a point to inform her that I have not been abusing my prescription drugs, since we had that "talk" last time. Anyway, it was a good visit, and a quick, efficient one. I am satisfied.

I cooked lunch today! During my appointment, I was struck with a strong craving for rice and fish, which I indulged. I cooked the salmon with minced onions, some seasonings, and a bit of agave-sweetened apple cider vinegar. It was pretty phenomenal. What's more, it's staying down quite well. I'm even still hungry after waiting for a bit, so I think I'll follow it up with an apple. I am just being very careful not to eat too much, because I really don't want to relapse again. Every time I do, it's more miserable. But I'm making good progress in getting back to regular eating habits, or even eating habits that were better than the ones I'd fallen into. I'd like to cook more often, and I intend to make the effort. My intentions are good; we'll see about the follow through.

It's been a good couple of days. Yes, I've been sick as a dog, but I've read some good books, cuddled with my husband, talked to J and my mom, and watched some good movies. Oh, and done good stuff with work. I'm totally wiped out, but I feel good about how things are going.

C and I have both seen this video and find it hilarious, which is why it was also funny the other day when I likened having fibro/connective tissue disease to a horribly slow murder with an extremely inefficient weapon.

Yesterday was a tough day. While life as a whole is good, some days are just rough, you know? It was one of those.

First of all, I was not able to sleep the night before. I don't know why. Sometimes my fibro likes to kick things up a notch and throw some unexpected surprises at me, and this was one of those little gifts. I did manage to get a few hours of dozing in, all put together. Maybe two or possibly three? (When you consider that I was in bed for, like, 9 hours though...) It was nice to snuggle with C, though. He was sleeping rather restlessly, continually pulling me into his embrace while he slept. I liked it, except for the hot flashes I have been going through which cause me to sweat profusely, and the fact that C is a furnace, especially when he sleeps. I was roasting, but content.

I finally pried myself out of bed and got ready for my appointment with the pain management specialist. I didn't realize until later how much hope I had laid up for this appointment, but I was really anticipating something special. I arrived 15 minutes early, because I knew I'd have forms to fill out as a new patient. I filled out the forms, and waited... and waited... for 2 hours. Not impressed. However, I have to give them some grace, as one of their doctors was in the hospital seriously ill, so they were scrambling to cover their bases. Fortunately, they had comfortable couches.

I finally got into the room where the doctor would see me, and waited some more. He came in just after I finished stretching, since I had time to kill. About 5 or 6 minutes after he came in, he was gone and we were through. I was holding back tears, but they began to fall while I sat on the comfortable couch again, waiting for my prescription. A young man sitting near me saw me crying and asked, "Are you okay, m'am?" I nodded and smiled at him through my tears, though they continued to fall. He looked at me again and said, "You're too beautiful to be crying." I smiled again, and then he asked me, "Is it the pain?" I nodded and said, "Yeah, but... they said there's nothing they can do to help me." He looked crushed and sympathetic and expressed his condolences. We struck up a conversation, which helped me to get my mind off of my bitter disappointment and hopelessness, but when he was called back to the patient's room and I was called up to the desk for my prescription, the tears built up again, and I cried all the way to work.

I had hopes that a doctor who specializes in helping people to manage their pain could help me somehow, but he said that since it's fibromyalgia, there's nothing he can do. He instructed me to get 30 minutes of aerobic exercise a day, so that my natural endorphins could do the pain-fighting work for me. I mentioned that movement and exertion made my pain worse and made me sick, but he didn't pursue the lead. I was too crushed to really stand up for myself, but I did point out that, in lieu of standard aerobic exercise, I have sex a lot. The look on his face as he struggled to recover his composure was quite humorous to me. He didn't know how to respond to that at all.

When I was telling C about my encounter, he struck up a hypothetical conversation with the doctor in which he pointed out (in a rather upset tone) that he/I "can't do 30 minutes of aerobic exercise a day. I can't run. I can't even jog. I have to use a walking aide just to get around. Doing housework exhausts me and makes me sick sometimes. I would lay down, but even that hurts!" It was sweet to see him take up on my behalf. I almost wish that he were there with me so he could have stood up to that doctor. As it was, I was dazed and dizzy from lack of sleep, then crushed with the hopelessness of the statement that there was nothing they could do for me.

I told him my problems. I said, "I'm here because you guys know how to deal with pain. I'm in a lot of pain, and it's ruining my life. I'm pretty much bedridden all of the time. Help me."

"I can't help you."

I felt my world caving in. It was like I was looking down a dark tunnel at the rest of my life, and all I could see was crippling, gnawing pain. It felt like a death sentence, like my pain was only going to keep getting worse and worse and there's nothing anyone can do about it. That's why I cried. Because I don't want to live this way, but this man was pronouncing this unliftable curse upon me, throwing useless advice in my face and walking away. This man that was supposed to help me... refused. Said he couldn't.

At least he gave me pain killers.

As I cried in my car, though, I caught sight of the ring that I bought recently, my Warrior/Survivor ring.

On one side, it says "Warrior" in purple, and on the other it says "Survivor" in black.

I looked at the word "Warrior" that was facing me, and I felt my resolve harden. Warriors are named as such because they go through difficulties. There is no such thing as a warrior that has not gone through at least one battle. I am not a Warrior because my life is easy; I am a Warrior because I face and overcome difficulties. This is another battle for me to fight. I will do this. Not so much that "I can do this", but I will do this. I will continue to live my life, even if jerkface doctor man won't help me.

When I got to work, I shared my experience with E, and she held me while I keened my grief and disappointment. I love how she is totally empathetic, because she has RA and deals with large amounts of (literally) crippling pain on a daily basis. We fight the same fight. And we ran into the same jerkface doctor on our journey. He made her cry, too, when she saw him. He said something about the pain being her fault because she's obese and she needs to get up and lose some weight. I would say that something is lacking in this guy's bedside manner.

She encouraged me, though, and shored up the resolve that had already begun to grow in me on my drive there.

I am fighting... one day at a time. One situation at a time.

The rest of the day was... nice. I guess. I made it home and collapsed into bed for a couple hours worth of dozing. When C got home, we went for a long walk and talked about stuff. E had wanted to send us to Julian, my magical mountain retreat, during the time C had gotten off for J's wedding, and I was SO excited and looking forward to it! (Note to self: stop looking forward to things.) Well, we can't manage the gas money for that, either, even though it's only 2.5 hours there. Alas... So I came up with an ingenious idea, which is to go camping here locally for a day or two. We can go out to our special camping place where he proposed the first time (and where some other incidents of great importance happened) and have some time together in the wilderness. (Sorta.) And, fortuitously enough, there is supposed to be a fantastic meteor shower on the days that I had thought we might go out camping! So I'm not going to say that I'm looking forward to it, but it would be a nice thing to have happen.

When we got back from our walk, C prepared and assembled the ingredients for a yummy crockpot stew, which has been simmering all day today and filling our house with delicious smells. It's making me huuuuuungry! Today, I got my MRI and EEG scheduled for about 2 weeks from now, just a few days after my electrical nerve testing. M was willing to come sit with me when I asked him, but a phone call to the hospital confirmed my suspicions that he wouldn't be allowed to come into the MRI room with me, and since it could take an hour or more (unsure on the timing--some sources say 15 to 90 minutes, some say 1 to 2 hours) I would hate to have him just hanging around, waiting for me. That seems rude, especially since he'd have to get the day off of work to take me. I really wish C would/could go with me, but it's not going to happen. I have to be there by 6:30 a.m. for the EEG, and they want me sleep deprived for some reason. The MRI isn't scheduled until 9, and I have no idea when I'll be getting out. C will be needing that time to sleep, because he works that day, so I didn't expect him to be coming with me. In fact, he laughed when I mentioned the possibility, and told me "Yeah, right!" Just as I expected. lol. 

I'm going to have to plan a few things in advance, such as making sure that I have food with me, and pain killers (if I'm allowed to take them-- laying still on hospital beds for that long will take its toll on me, not to mention the sleep deprivation!). I'll also need warm socks and a light sweater or blanket. Hospitals are always freezing. I don't think I'll need to be in a hospital gown, though, since everything has to do with my head and I won't be wearing any metal. I'm not even allowed to wear makeup! (Which is fine... I don't wear it anyway at all, hardly.) I suppose that's because some products have trace amounts of metal in them, which would disturb the magnets in the MRI.

I'm looking forward to potentially getting some answers, though my expectation is that the tests will all come back "normal" and no one will have any idea what's wrong with me. I suppose that's better than MS. I had to explain what that was to C last night, and he looked pretty grim about the possibility. Yeah... we're just gonna assume that I don't have it. That's the best route.

I saw the neurologist today. While he is more skeptical of fibromyalgia than I'd like (it has no objective test to prove its presence in a person), he seems to know what he's talking about when it comes to other things. In addition, he's friendly and laughs easily, so I will stick with him, at least for now.

When I told him about the twitchies, he immediately began asking questions. He feels that many of the things wrong with me are puzzle pieces, including the fibromyalgia. Indeed, there are several diseases that fibromyalgia mimics the symptoms of, so in reality I could not have fibro at all, but some other disease. Isn't that interesting? So I'll be getting an MRI, an EEG, and some electrical testing in the next few weeks, to see what's going on with my nervous system. Honestly, there are several suspects that we are trying to see if we can rule out, and MS is one of them. Many of the symptoms of MS are the same as fibro, and the twitchies are definitely of a neurological origin, so it's a suspect until we rule it out. Lupus is another. Basically, we're looking at autoimmune causes it seems, although he agrees with me that the big accident back in '06 may actually have something to do with my nervous system dysfunctions.

Other than that, life's been pretty calm. I've had a few more instances of grieving D, but I know it's normal and healthy, so I just go with it and cry it out. C will often hold me while I cry, which is nice.

Have I mentioned lately that I love being married? The more time passes, the more love I am filled with for C, and the more gratitude wells up and overwhelms me. I am so grateful that I chose this path for my life. I am filled with more satisfaction and happiness than I have ever had in my life. My time in Id was very fulfilling, and comes a close second, but the work I was doing to heal from my past adds an element of discord and instability that is lacking in my current life. I have stability, for the first time in my life. Real, honest to goodness stability. I have C to thank for that. He is a Mr. Steady, that's for sure, and he works so hard to make sure that all of our ends meet. I know I can trust him and rely on him to care for me... and our children, eventually. I love that man, more than I thought I was capable of, and it's clear that he loves me as well. Life is good. Loving and being loved, despite whatever financial difficulties we are having... everything else pales in comparison. I am basking in the glow of knowing that I have my own little home, a place that will always be here for me. That doesn't mean that I don't still get restless and have the urge to go on an adventure, but the adventure is sweeter knowing that home is waiting. A real home. My home.

I see the pain specialist tomorrow, and I hope that he can help me. The patch took a few days for the medicine to build up in my system, and it's helping a little, but I'm still quite reliant on painkillers. I feel less shame about using them now, less guilt for taking them. I don't really understand why I feel as though I need to prove myself by enduring large amounts of pain, but I'm realizing that it's pretty silly. If I'm hurting and have the means to lower that pain, why shouldn't I? I would want anyone else to do the same. I do tend to treat myself much more harshly (and abusively) than I would ever treat someone else, but I'm working on overcoming that. I'm still learning how to be kind to myself. It's a long process, but one that is proving worthwhile. I think it's contributing to my satisfaction and joy in life. C is wonderful, but he is not and cannot be my everything. It would be unhealthy for me to expect that. I need to find my own joy and satisfaction outside of him and our relationship, although he does bring me much joy and satisfaction. That's why I'm grateful that I can still work some. It does a lot for my spirit to know that not only am I still somewhat self-reliant, but I am helping others. It's been hard, this loss of independence and control over my life... but I still have some measures of self-reliance left, and I cling to them.

Now I'm just rambling. I ran out of the effective painkillers my rheumatologist gave me to tide me over, so I had to take a large dose of two other painkillers that I still have. It worked, and I feel very relaxed and happy, which I love. I can see how easy it would be to become a prescription pain killer abuser, but that is something that I do not want. That contributes partially to my guilt over pain meds. I'm afraid that by enjoying the relief from pain and the mild euphoria that the drugs sometimes bring, I am choosing the path of the drug abuser. I know that's not the case, but enjoying the effects of the pain killers frightens me in a way. The weather has been forcing me to take more pain killers than I would normally (the barometric pressure is all over the place!), but I have other, more active ways to relieve the pain as well. C claims that I'm going to kill him with wanting sex so much, but it's just a natural part of who I am. I think he secretly enjoys the fact that I want him so much. In fact, I know he does. He pretends to hold out because he likes to watch me try to convince him to "give me a dose of painkillers". I found that little tidbit out last night, and I pretended offense, but I find it just as fun as he does to try to convince him, so the game will go on.

Summary: getting the medical help I need, despite our financial hardships. (Payment plans FTW!) Life is good. I love my husband, and I love being married. Took some meds, I feel good, and I borrowed some books from the library so I've been reading like crazy lately. I've been more fatigued than usual, so it's a good past-time.

While we were at the mechanic's, paying C's bill, we ended up in a conversation with the owner and his son. The owner is friends with C's dad, R, and he was remarking on how much C is like R. I totally agree, but I don't mind because R is good people and I like him. (The main character of Farscape reminds me so much of R!) When the owner asked what I did for a living, I had to explain about the fibro, and I got the typical, "You look perfectly healthy" response. C was explaining how I don't know from day to day how I'll be, and there are some days that I can't even make it out of bed. The owner understood because his wife has chronic back pain problems and sometimes can't make it out of bed either.

It just struck me how "bad" it really is when I heard C explaining me. It didn't really occur to me that, yeah, there are days I'm stuck in bed, and that's not normal. But when I heard someone else say it, I realized that no, it's not normal. I've just gotten so used to my life... I realize how weird it is to try to figure out when to take a pain killer, because I'm literally always in pain, so it's a question of "can I handle this level, or do I need a pain killer to bring it back to a more bearable level?" Since I went off of my meds (can't afford the Savella, and we thought the gabapentin was what making me twitch, which wasn't the case apparently), I have been in excruciating amounts of pain. I thought it was bad before? No way. Being untreated for a week showed me how bad the fibro's gotten, with the help of its autoimmune buddies... and I'm so grateful that I'm back on the gaba. Every day is a little less pain.

Today, however, I'm quite weak and dizzy, and I have a baby migraine. It's not full-blown, but it's enough to be painful and annoying. It's almost easier to be a "warrior" when you're fighting intense pain, because it's something you can focus your anger and frustration on and kind of push off of it into greater heights of determination. When you're confined to the couch because you are falling over when you get up, though, it's harder to wrap your mind around that and use it to fuel your determination. At least, it is for me. Maybe because the pain is a constant, so I'm used to it. It's almost a tangible object to me. I have weapons: pain killers, stretching, yoga, deep breathing, sex, distractions by movies and such. With the weakness and dizziness... I don't have any weapons for that. I don't know how to cope with it any other way than by resting and riding it out. I can't get out of bed today.

But I need to realize that in resting and riding it out, that is my weapon. I am battling. I am warrior-ing while flat on my back. I'm still breathing, I'm still smiling, and I'm still happy with my life. I've won.

It would be easy to focus on and give into bitterness, because I'm too young for this. I hear it all the time... "You're too young for this." I know. I know. I'm only 25. I could let the unfairness fester... or I can take it in stride and realize that everyone has a battle to fight. Life is all about "warrior-ing" in our own particular ways. This is my fight, and I'll fight as well as I can. If I fight well, then I can enjoy the rest.

So, today... I am a warrior on my back, and I'm winning.

I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I don't know where to go I can't do it alone I've tried
And I don't know why

Slow it down
Make it stop
Or else my heart is going to pop
'Cause it's too much
Yeah, it's a lot
To be something I'm not

I'm a fool
Out of love
'Cause I just can't get enough

I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I don't know where to go I can't do it alone I've tried
And I don't know why

I'm just a little girl lost in the moment
I'm so scared but I don't show it
I can't figure it out
It's bringing me down I know
I've got to let it go
And just enjoy the show

The sun is hot
In the sky
Just like a giant spotlight
The people follow the sign
And synchronize in time
It's a joke
Nobody knows
They've got a ticket to that show
Yeah

I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I dont know where to go I can't do it alone I've tried
And I don't know why

I'm just a little girl lost in the moment
I'm so scared but I don't show it
I can't figure it out
It's bringing me down I know
I've got to let it go
And just enjoy the show

Just enjoy the show

I'm just a little bit caught in the middle
Life is a maze and love is a riddle
I dont know where to go I can't do it alone I've tried
And I don't know why

I'm just a little girl lost in the moment
I'm so scared but I don't show it
I can't figure it out
It's bringing me down I know
I've got to let it go
And just enjoy the show

dum de dum
dudum de dum

Just enjoy the show

dum de dum
dudum de dum

Just enjoy the show

I want my money back
I want my money back
I want my money back
Just enjoy the show

I want my money back
I want my money back
I want my money back
Just enjoy the show