I'm going to be posting two posts today, but the other one will be kink-related, so be aware. Or beware. However you feel about that particular expression of sexuality.

I've been feeling… off… lately. I think since the Arthritis Introspective G8 Conference in Milwaukee two weeks-ish ago. Don't get me wrong, it was a great time and I made some fantastic business/advocacy connections, not to mention at least one solid friendship which I suspect will last a lifetime. I didn't learn much that was new to me, which surprised me, honestly. I didn't realize how much I already know about rheumatological diseases in general, and living with them in specific. I impressed myself, actually. lol. However, it was difficult in the sense that there were a lot of people there who do all this amazing volunteer/advocacy/professional work to support the arthritis community and raise awareness and change legislature to benefit the citizens of the arthritis community, and it left me feeling basically like a big, fat loser.

I already have a difficult time with the reality of having to leave my work at the Healing Journey, which  is my baby, having nurtured it from the ground up and having actively been a part of almost every step of its growth until a year and some change ago… whenever it was I stopped working. Two years? Yeah, I think so. Time flies, really, and I forget when I stopped doing this or that. They aren't exactly milestones that I wish to remember and celebrate. Although… maybe I ought to do just that? Maybe I should pinpoint the milestones of my disease(s) progression and find some way to look at them in an optimistic light, or at least not be totally broken over them. Have a tea party with friends for every "anniversary", or do something symbolic and meaningful to honor the tough decisions I've had to make in the past. I like that idea. I personally feel that symbols and representations are immensely powerful and can be crazy healing if used in earnestness. It goes along with my slow research and interest in paganism/nature-based "religion". I'll have to think on that and see what comes to mind.

Speaking of symbols and representations, did you notice that I got my nose pierced?! Oh, and my lobes got another hole in them as well. This ties into my "funk" in a sense, because one of my greatest gripes about my time as a super Christian is that I had to so severely curtail my personality and present an image that wasn't really me, and to me that hearkens right back to the extremely abusive and dysfunctional environments in which I was raised. I was actively told to keep the true nature of our home life a secret from the authority figures in my life, such as the school teacher at the small church school I attended from first to eighth grade. At home as well, I learned early to cultivate or feign an interest in whatever my step-dad was into, to avoid as much pain as possible and garner as much affection as he was willing to dole out. So that means that the Raiders became my football team, I loved video games and Final Fantasy VII, I watched WWF wrestling and had a favorite wrestler, though I deviated there by favoring Goldberg instead of Sting. It was a survival mechanism, in childhood as well as in adulthood. I needed an identity, acceptance, because I had so long stifled my own identity and could not accept myself. How could I? I'd been told in various ways, most non-verbal, that who I was naturally was unacceptable. Such is the nature of abuse, of the power and control wielded by the strong, abusive person or people. They efface the identity of the weaker, tell them who and what to be, becoming ever more powerful with each act of compliance. It's awful.

My teenage years, the high school years, were a reprieve. I dressed how I wanted, collected and hoarded the things I found interesting, listened to "my" music… but it left me isolated and ostracized, for the most part. I always had a few friends, but most people stayed away from me. Apparently they were afraid or intimidated because I seemed so self-confident and assured, but it was a complete facade. I did enjoy those years of relative freedom, though. It was during that time that I met my husband and we fell in love. He became the person who knew me the best; my true self. Every gory detail was open to his eyes and ears… eventually. And he accepted me. That laid the very first foundation for healing, though it was many years before any significant healing would take place.

Now, I'm recovering from my years in bible college and as a worker for my denomination in a small, backwoods area of Idaho that was more conservative than anything I'd ever seen before. I know that I was probably considered very liberal, though I was considered extremely conservative where I came from. It's funny how that superficial identity can shift from place to place, depending on the perceptions of those around you. But I'm still scared to fully express myself, because of social media and the circles I'm still friends with. I want to be "me", but I don't want to drive away or alienate my old friends whose views I understand but don't necessarily agree with. And more than anything I don't want to be evangelized. I'm not "lost". In fact, although I've felt so "blah" since the conference--something I later realized to be the product of travel exhaustion and PMS--I still feel the strength and confidence that I possess in myself keeping me afloat. I have times where I doubt myself, get down on myself, even hate myself still. It happens from time to time. But one of the things that I hated most while trying to be a Christian was having to give away my power and give the credit for my strength and my accomplishments to god. You know what I mean-- you are never actually the one who does anything, because it's god engineering the circumstances and giving you strength and telling you what to say, right? It reminds me of playing with dolls or figurines/action figures. I said what I was supposed to, but I was constantly bewildered by the fact that I was the one who worked hard and poured out my effort and strength, yet I was supposed to ignore my own willpower (because relying on your own willpower is a sin, I think) and demurely say "praise god!". It just didn't sit right with me. Again, probably because of the lifetime of abuse and domination where my power was taken away again and again and again, my accomplishments diminished and ignored.

I get that a lot of my beef with my denominations beliefs stem from my sensitivity to abusive tactics. Some might say that I'm overreacting and interpreting abuse and dysfunction where there is none, but I believe that, because of my sensitivity, I see what others may not be aware of. They may be fine with ignoring their part in things and giving all the credit to god, but I'm not. Human beings are remarkable, and capable of so much. I think that it does a disservice to humanity and our potential when our strength, our creativity, our amazing power to endure the unthinkable and come out the other side hopeful and gracious, all that is attributed to the subtle workings of a divine being who is way out of our league when it comes to that kind of stuff. What about the incredible contributions of atheists or other religions to humanity? I've been told that it's god working through them without their knowledge, but isn't that kind of invasive? If a deity is going to pop into my head and use me as a vehicle for his/her/their accomplishments, I'd kinda like to know about it. It feels like a conspiracy theory for Big Brother or something.

Anywayyyyy… moving on from that soapbox… you may have guessed this by now, but my piercings are symbolic for me of trying to be the best version of myself that I can be; my true, honest self. It's an "I've wanted this for a really long time, dammit, and I'm not going to let my fear of rejection or criticism stop me from expressing myself anymore!" statement. And you know what? I love my nose ring so much. I think it looks really attractive, and I like who I see in the mirror a little more now that I have it. I feel a little more badass, more ready to take on whatever comes to me, a little more bold and creative. I feel unstoppable, really. All that from a couple little circlets of metal. Go figure.

This feeling of uncertainty, of "blah-ness" that's been haunting me for the past five or so days has also led me to take a step back and evaluate my life. I don't want to waste away on the couch for the rest of my life, but I do recognize that I'm in a transitional phase right now. It won't always be like this, but right now I'm trying to find diagnoses and learn to manage what I already know about. It's a lot of work and time and energy, and I don't have much left over for anything else except maintaining my marriage and a few select friendships. In fact, I really need people to be proactive if they want to interact with me at this point. I'm exhausted all of the time, and I am sleeping a good deal of the 24-hour day. I spend a lot of time with my cats and snakes, too, when I'm awake. Mostly because I can do that while I'm doing other stuff, but mostly mostly because my cats follow me around and sleep next to me and take my spot if I get up for something.

I have a few bits of news that's developed recently, as well. Firstly, I was denied disability again. Everyone who knows me and has heard is more or less incensed, because they believe that I qualify without reservation, and moreover that it would be a huge benefit for me and my husband. I feel the same way. I'm really ticked off, because they claim that they carefully reviewed my records, yet the list of diseases I have is not only incomplete but one of them is totally wrong!! Nowhere in my medical records does it state that I have hyperthyroidism. I struggle with hypothyroidism, something that's given me much grief and physical suffering through the years. Uncontrolled, it is debilitating in its own right. Corey and I both agree that it's time to seek a lawyer's help. I also received a private message from an acquaintance who is a disability lawyer in a different state, and she said as much before I even discussed it with her in depth. I felt quite affirmed in kind of a silly way while Corey and I were discussing the disability ruling and our next move. I suggested that maybe I am just "being a pansy" and I'm not as sick as I think I am? Maybe I just need to suck it up and try harder? Corey looked me in the face and said, "No. You are not a wimp or a pansy. You are sick, and they're wrong." I know that if I were simply being lazy, he would call me out on it. He agrees and says that he'd tell me to go do something. lol. It was nice, though, knowing that my hubby not only agrees with me, but he understands the severity of my issues and believes that I am doing my absolute best to be "well" (or just "better") and productive. It warmed my heart.

In other news, I began physical therapy today! The great part is that she comes to my house once a week, so I don't have to arrange transportation for that as well. It's hard enough trying to find rides for all of my dr's appointments, much less the ones in other cities or states! Seriously. That is the biggest thorn in my side besides the Intractable Pain. (The pain which the good ol' disability folks didn't list among my diseases or take into consideration, apparently.) I have a chart of exercises to get through, and the repetitions are low for now. We are starting small and working up, not only because of my hypermobility, but also because of my extreme fatigue. At first, my goal is to do all of the exercises within two days. She showed me sitting variations for almost all of the 9 exercise moves, so that's a really good thing for me. Did you know that there's a sitting variation for crunches?! Yeah. I'm super freakin' thrilled, especially because I mentioned that doing sit-ups or crunches on the ground makes my hips pop during every rep and it's quite painful. I had to deal with that through years and years of high school P.E. classes, and I'd like to avoid it if at all possible… which it is!!! Joy to the world ^_^

That's about all for now. I feel that I've rambled quite enough for one night, and I still have that "other" post to do. I have a project that I'd like to get done this evening as well, so maybe I'll take a typing break and work on that for a bit. I plan to get on the internet more frequently in the near future. I have the desire, if not necessarily the drive for it. I was feeling guilty for a while, but then I just realized that this is the phase I'm in right now. I don't need the internet as a constant distraction from my raging pain, because it's being managed fairly well, and I have other things that take up the increasingly minimal hours that I'm awake. In all truthfulness, too, being online exhausts me. It's just tiring, and I'm already so tired that I don't feel like handling that extra tiredness as well. That's usually why I avoid it these days. But I'm starting to feel a hankering to participate again, to come out of my isolation a bit, and the internet is the way to do that. So I may be posting more often, lurking on Facebook a bit more, and hanging out on the kinky message boards I read more frequently. Just as I'm launching PT to strengthen my body, I think that I could use some social strengthening as well. I'll give it a go, anyway.
Toodle-oo!

You know what they say: A silent blog is a sign of a busy life! Well, that's sorta true in this case. What happened is that I was pounced upon by a very nasty flare, one that lasted somewhere around a week, give or take a couple of days. In the midst of that I've had doctor's appointments, medical tax stuff to hunt down and appropriate and relocate to our tax lady, a trip to Tucson for to see a cardiologist, a Celebirthsary/going away party dinner, and my second wedding anniversary. Even with all of that, I'm still pulling out of the flare, so thank goodness for that! In all honesty, I was worried that it wasn't just a flare, but rather my new mode of existence. That would have been horrible, because I was in such terrible pain that the painkillers would do nothing but blunt the edge of it a little bit, enough to keep me from going crazy and screaming while I hobble down the streets of downtown naked and slicked up with mayonnaise, which I'm allergic to.

Clearly, that didn't happen, or else the government is really good about redacting highly amusing incidents. I would say that I would remember if that happened, but that's not actually the case. Something else I've been up to in this interim (and before, if I'm being honest) is that I've been having some major troubles with sleep and sleepwalking. First the waves of overwhelming fatigue so I'm sleeping 18+ hours a day and exhausted down to the pores of my bones (y'all know what I'm talking about!), and then BAM! Insomnia. Sort of. For a day or two. But now I'm being hit with really bad sleepwalking, something akin to narcolepsy that pulls me into these dream trances when I'm tired, but when I am deep enough into the standing-sleep I go limp and collapse, usually forward, which jolts me out of sleep and usually I can catch myself on whatever counter or corner is nearby. Not always-- I hit my face on the metal shelving of the pantry last week, and my head on the bathroom mirror.

I also do scary stuff, like get into my pain medication thinking it's Benadryl or something else. I recently woke up with six 100 mg morphines in my hand, thinking in the dream that it was Benadryl I needed to take, but thankfully I was lucid enough upon snapping awake that I realized what was going on and put them back. I get food out and leave it.  I open windows and surf Facebook and all kinds of shit, and it TERRIFIES me. What if I buy stuff without waking up or remembering? I don't have any spending money! That could be bad.and screaming while I hobble down the streets of downtown naked and slicked up with mayonnaise, which I'm allergic to.

In a "dream sequence" that I vaguely remembered upon waking, I had--for some very legitimate reason, I swear--gone into the kitchen, pulled out my husband's new package of bratwurst, opened up the plastic covering, then left the whole thing sitting on the cutting board. If Corey hadn't checked the kitchen before going to bed they would have been out all night and spoiled! (He woke me when he came to bed with a forceful yet bewildered, "What's wrong with you, woman?!?") Two days ago I found a strawberry in the pot and pan cupboard. Fortunately, it had only been there for a day or less. I'm not sure when it got there, or why, but it was there all right… and it was delicious! :)

 So there you have it.What might I possibly do to myself during these… "episodes"? I'm scared to sleep, but the more I stay up and try not to, the worse it gets. I called my neurologists office, and when I explained the situation to his assistant A, she was freaked out and said that she'd talk to the doctor immediately, when he was done with what had him busy at that time. So she sent him a note, and now I've got a referral to some place here in town to do a sleep study. They want to see if I have narcolepsy, because these symptoms are awfully similar. In a perverse way, I was glad to hear the concern in A's voice and to see how seriously she took my phone call.  Corey has been annoyed by it, sometimes even amused, but he doesn't seem to think it's that much of a big deal. I had been minimizing it as not so bad, but I knew, I knew, that it is not something to ignore. It's a scary thing, and I could get seriously hurt one of these days. A recognized this a well, and obviously my doctor did too, because the call from A informing me about the referral came only 2 or 3 days after my initial phone call. For those of you who might be professional patients, you know that this time frame is practically unheard of when dealing with the medical system! The cogs move ever so slowly, but this was rapid fire. I'm grateful. The symptoms of this sleep-problem, however, wax and wane, so I'm really anxious about the test, hoping that I'll be malfunctioning during the test so they can see exactly what's going wrong instead of sending me home with a clean bill of health, as so often happens. (On paper, I'm really quite healthy! Oh EDS, you so stealthy!)

The extra-exhausting fatigue appears to be returning, as I slept the entire afternoon and evening away, after being awake for only 2, maybe 3 hours this afternoon. I've been up since 12:30 a.m., and Corey and I took a walk together, which was so nice! Work tires him out so much that he is in no mood to walk anymore, mostly because he's been on his feet and moving around all day. I don't blame him a bit. His feet hurt when he gets home, and I totally understand that. But we walked tonight, and it was very nice. So anyway, back to the fatigue. Yes, it's here, at least for today, but I doubt that it'll confine itself to only one day. I've been tired down to my bones for a long time, and now I just feel… heavy. Maybe the cycle of fatigue and sleepwalking is starting over again, and I just gotta hope that the timing is right for that sleep study to see what they need to see.

Other than this weird medical stuff going on, I'm doing okay mentally and emotionally. I am honestly excited for the challenge of growing up and into myself while so many diseases attempt to thwart my efforts. I mean, when I was relatively "healthy" (been sickly all of my life, and now that I know about the EDS a lot of my childhood makes so much sense to me now), it was pretty easy to express myself in my outward appearance and my activities. Now both of those have been compromised, and I must find new avenues with which to not only express my true self, but to have fun in life and to help other people who are hurting very badly. I tend to think of hurting people metaphorically, but maybe I'm supposed to help the literally hurting as well. I've gotten much encouragement on that subject. We shall see. Life will unfold at its own pace, and not before. I know it sounds all trite and cliched, but it really is all about taking life one day at a time. How can I know that I'll be alive in 3 months? There is no way. And if I try to think about the future and what I can or feel that I need to accomplish, or if I think a certain way about the past, it is then that I feel hideous and lazy and basically an awful specimen of humanity. I can't let myself think like that or send those messages to my psyche. It's twisted and tormented enough from all of the abuse I endured until I was old enough to move on by myself, and I don't need to make myself hurt even more. I would never say the terrible things that I think to a loved one, or even to a random stranger on the street (though I have a few nemeses that I totally would heap the verbal abuse on! *grin* The point is, if I can't say those things to other people, where do I get off abusing and harassing myself like that?

I practiced that "in the moment" stuff today. Day two of strictly couch time (though I did do dishes last night), and the temptation to lay into myself was strong. There was so much I could be doing, I have this many things on my checklist, god I'm lazy, I'm being a wuss so I need to suck it up and go achieve something, I'm not really that sick, etc. etc. So basically I made the decision to say "fuck that noise", and I continued watching my movies and taking my nap that turned into an 8 hour sleep. The urge to hate myself for not just pushing through feeling crappy is so strong, especially because it's not some cold or flu that I can nurse for a while and then return to the world perfectly refreshed, restored, and ready to rumble. Nope-- this'll be here for the rest of my life. So why coddle myself? And yet… there are times when I do push through and get stuff done, but it's because I WANT to, not because I've guilted or hated myself into it. Hating myself into doing something will generally lead to resentment, and that's just the first step onto the merry-go-round of Hell. 

What I've discovered is that, basically… I'm a grown adult and can do what I want! Whether that's spending the day on the couch with movies and tea and my cats or doing laundry and sweeping the house before answering mail, it all comes back to doing it of my free will and not letting myself lose my boundaries or letting them be breached--breached by my own self. How weird is that?! I'll tell ya, it's hard to find the balance that you need to be happy and productive while still being "lazy" because you need to be. And trying to find that balance is exactly the sort of thing that has led to a silent blog. Well, that and fingers too stiff and painful to type. That's a sticking point for sure.

Oh, quick side note: I have a mental health evaluation for disability on the 10th of this month, so I'm kinda nervous but mostly happy. This means that they didn't just reject me out of hand! Yippee! But I've also heard horror stories about how these things go, with obviously and legitimately disabled people being turned away without receiving the help they need. Most everyone has told me to lie, embellish how sick I am, because otherwise I won't get disability. I shudder to think that the system is so far gone that this is standard advice from experienced people. When I say that I won't and don't lie, they backpedal to "Well, just exaggerate then". That… isn't as repulsive, but I still don't feel comfortable doing it. I say that if I am exactly myself and they turn me away, then I will just appeal again and again and again until they are sick of me and give me the money to get me to go away ;) (Shawshank Redemption. Who says movies don't teach you anything?) I have strong speaking skills, and I know that I can be very descriptive and good with words when trying to communicate a point, so I'm counting on that to tip the balance in my favor. I'm told that I'm quite charismatic. Here's hoping it works! The inspector is a woman, and I have this mental image of an older blonde woman in a navy skirt suit, thin, wrinkled face, no trace of humor anywhere, lips pursed, very observant (hawk gaze) and totally crisp and pointed in conversation. I imagine her to be very intimidating. I wonder if my imagination will prove true? I'll have to let you know, of course :)

I have been asked quite frequently this month if I'm happy about my new diagnoses, happy to know more of what's going on? That's a hard question to answer, truly, but the answer I give is kind of a yes-ish yeah sure when I'm asked. I mean, yeah, but…

The news I got is not pretty or happy or pleasant, not by any stretch of the imagination. The hypermobility, there is no treatment or cure other than palliative care, meaning that my excruciating, unmitigated pain will continue without cease or relief, most likely for the rest of my life. Not only that, but it comes with joint slippage and dislocations. Definitely debilitating. Then you have the connective tissue disease and the arthritis, both of which include pain of their own but can be treated. However, there is a distinct possibility of degeneration in time, especially with the arthritis, which is debilitating as well even if the pain is alleviated. It would be nice to have some of the pain taken care of and taken away, even if not all can be. All that, on top of the Hashimoto's and Addison's that must be closely managed if I'm to live normally or stay alive at all, the food allergies and IBS that can make my life a living hell in the blink of an eye and last for weeks at a time,  depression that sucks me into the deepest, darkest pits of blackness without warning or mercy, asthma that prevents me from hard exercise lest I suffocate on my own carbon dioxide, colitis and internal hemorrhoids that leave me doubled with agony and passing blood and bloody mucus… and by the way, do you know how scary it is to use the restroom and see great amounts of blood among your excretions?! Yeah. Bleeding internally is kinda terrifying, no matter how close to the exit it is. And among all that I still have the original fibromyalgia, which is a roller coaster ride of bullshit all on its own. (One of the theories I've read recently about the rise of the chronic illness population is that with the medical advances we have, the weak that would have died off in past times are now surviving to adulthood and bringing their illnesses with them. Looking at the list above, I really think that I would have died off, no? I mean, I barely survived birth.)

So the answer to that oft-asked question would have to be "no". No, I am not happy about these new diseases. Relieved? Yes. Vindicated? Totally. But happy? No. No, I am not fucking happy. I am oddly proud that I was right all this time, though. At the same time, I'm done. I'm so, so, so done. I've had a fever for the past I've lost count days, with the chills and exhaustion that comes with. It's been the best I can do to get most of my dishes into the kitchen sink, but forget about washing them. I've had a minuscule to zero amount of motivation for anything in what seems like forever, and I'm so sick of it! I could go on and on with the complaints, but I'm tired of things being wrong and they just are and it doesn't matter if I write about them or not. I fear I am defeated at last… though I know in my heart that it is only temporary. I will rally and return to myself, someday… but for now, I'm wiped out. I haven't the heart to muster anything but naps.

I'm considering going to my grandparent's for a few days to rest, to let them take care of me a little. I yearn for a caretaker often and heartily, someone to lighten my load a bit. It's hard enough being so damn sick, but trying to fight through the medical system and do my truncated version of daily life at the same time is one plate too many to spin it seems. Who doesn't want their mommy to smooth their hair and make them soup when they're sick? If I had a dedicated caretaker, I wouldn't' have to worry about rides so much either. I hate searching for rides when I have an appointment. It's so difficult, and I generally feel like I'm taking advantage of the goodwill of my friends. I'm worried that I'll wear out my welcome one of these days. I had a thought, though, while I finally began to do some research into the lighter aspects of arthritis (I've put off any research or dealings with any of the new diagnoses until now. I just kinda don't wanna know yet. Don't wanna deal with it. Bleh.), that maybe I'll be able to find a support group here in the area. Friends online are a lifeline to be sure, but in the flesh support is another thing entirely. It would be especially nice to find a couple of folk in my age range as well, but I think that's pushing my luck for Yuma.

So, back to being all blah and curling up with my fever and sweatpants and electric blanket and tea and movie. I've been watching both of the 300 movies tonight in keeping with my rather black mood. The blood and gore used to bother me terribly, but I've learned when to look away. Also, Corey's dark humor has rubbed off on me a bit and I find some things amusing that I didn't used to. I learn so much watching war movies with that man. I swear he's an encyclopedia of battle tactics, armor and weapons throughout the millennia. It's amazing, really. Can't wait until he is teaching all that interesting stuff to our kids.

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'm so stressed, you guys. I have prescriptions I need to pick up tomorrow, but I can't afford the $15 to get them. I have a massage scheduled for tomorrow as well, which is one of the only things keeping me able to still walk right now, but there's no way in hell I can afford that. I could get my scripts, but then I wouldn't be able to pay my phone bill… and somehow I still have to make it to Phoenix twice and LA once this coming month for important doctor's appointments. Oh yeah, and the pharmacy in LA I got my pain meds filled at shorted me (and some other patients), and I've been trying to get it straightened out since Monday, but I'm running out today and I'm afraid I'm going to end up back in the hospital again… Damnit. I just don't know what to do. What can I possibly do that I'm not already doing? 

The worst thing is how unfair this is to Drogo. He has always worked hard, saved as much as he can, been responsible with his money, and the present is no exception. He just can't seem to catch a break, though. When it seems we're about to come even and he might be able to get a handle on his bills again and even sock away a hundred or two dollars, something breaks or is more expensive than anticipated, or some new bill crops up. Without fail. He is such a trooper, but how long can he last under such a strain? The poor man feels like a failure, but he is one of the most valiant men I know. How unfair is that? And it kills me that I am the source of this pain and stress. I hate it. I hate myself sometimes for being the instigator of bills that I am.

It's no wonder Drogo and I are having relationship problems from stress. We're both freaking the fuck out, trying to figure out how to just SURVIVE. I hate this. I hate this so much. Being sick is stupid. I have to believe that it will work out somehow, someway… but I really do not see it happening at this point, and it terrifies me.

I've done what I can-- created the fund raiser, sent links/pleas to every single person on my Facebook friend list, even sent the link and an appeal to some pages and businesses that I know… asking them to at least repost the link so that someone, somewhere might see it and have pity on us. I'm working on the inventory and production for my craft booth I've got planned for this winter. I haven't even put any money into supplies-- I'm just using what I've accumulated over the years. I applied for disability and we're just waiting, waiting, waiting… what else can I do? Seriously, what else can I do???

I'm stressed, scared, sick, and generally distraught… but I still have to believe that it will work out. We're doing the best we can. Life rewards that, right? Hard work, sacrifice, integrity… those all pay off in the end, yeah? I hope so. I genuinely, sincerely hope so. 

**Author's note: One of the new/aggravated symptoms I'm dealing with is, for lack of a better term, short term memory loss. I believe I can attribute this to the pain medication I'm on, but it does make for some interesting experiences. This post, for example, was written while I was literally falling asleep at the keyboard. It was totally coherent and even eloquent to me at the time, because I knew what I was trying to convey. The next day, when I realized that I had written a post (because I'd forgotten that I had, actually!) I came over to read it because, naturally, I couldn't remember what I'd written. I found it to be… not quite as lucid as I had thought it was. Apologies. If you can muddle through this and make sense of it, I just may hire you to be my FibroFog Interpreter. I didn't want to delete this, though, because I mean… it's my writing. A piece of myself, coherent or not. So, here it shall remain, if only as a testament to "this is your brain on drugs".**

I'm given to understand that there are many "steps" when it comes to acceptance and grieving of a chronic illness. It may not immediately seem clear as to why someone would need to "grieve" when they're clearly still alive. I mean, grieving is for when people die or you break up or something, when a relationship is lost… right? Right. However, unless you've encountered it yourself, seen it in the life of someone you know (to whatever degree of closeness), or have just thought about it quite intently, it's unlikely that anyone would understand the phenomenal amount of loss involved with a chronic illness diagnosis and the life after the diagnosis. I spoke of death just now; in a very real sense, a diagnosis of a chronic illness is both the death knell for the "old life" and the harsh squall of the newborn as a "new life" unfolds before the patient. Due to the completely unpredictable and generally misunderstood nature of chronic illnesses, though, many times that life unfolds only minutes at a time. There are no grand, sweeping vista of plans and ambitions or sweet, sleepy forests of peaceful routine followed decade by decade.

The landscape of the chronically ill and the average healthy citizen can appear deceptively similar to the casual observer. Often, the land of the ill is surveyed with a passing glance and dismissed with a nonchalant, "you don't look sick!" After all, the sun still speckles brightly along warm earth paths of smiles and laughter, mountains of various sizes and relative distances are scattered through the view, and always, always, the loud gushing streams of cool forward momentum and purpose weave and twist their way in and out of both expected and unanticipated settings. Look closer, though, and you will see troubling changes that stir up an unease within, changes that make you want to run for your life lest you be contaminated as well and your own precious world poisoned.

The straight furrows of garden plots are worn and cracked, dry with fatigue yet managing to bring forth a feeble crop. The cheerful cottages, clearly once a source of pride and sustained labor, now seem to troop sadly across verdant meadows bare of livestock. Lush banks of flowers cover crumbling masonry and low, stooped walls, draping the entire panorama in a rippling, delicate gown of every hue imaginable. The colors are a riot, but blend together to create the most intricate and exquisite of tapestries; every bloom is perfectly placed, from the single frothy Queen Anne's Lace to the tightly bunched carpet of creeping phlox, and what could have been hills barren and uneven becomes a spectacular faceted gem of pure joy.

The chronic illness world can be a harsh, ugly place. The cottages and relationships that we have so carefully labored over and constructed with our own hands through years and years of work, they often fall into some state of disrepair. Those who live in the cottages can do some of the upkeep themselves, but the true purpose of the cottages demands a synchronistic cooperation in order to truly thrive. Beyond the cottages, the near-empty fields mutely allude to the loss of hobby and gainful employment. The sweet silence of the air brings a sharp contrast to the usual sounds of looms clacking, animal noises, children squealing and squabbling; the normal sounds of a busy life have been replaced with a hollow, pealing silence that resonates down to the very bones.

The flowers though; ah, the flowers. The flowers make it all bearable, if not tolerable. The origin is unknown except to the owner of the valley, but such a rich and varied selection is found but rarely outside the landscape belonging to the chronically ill. It seems that the soil of normal lives just does not cultivate the proper atmosphere or soil in order for the plants to grow to their fullest and most luxurious. Well-groomed flower gardens can be seen among the graceful landscaping of nature itself where people have taken to cultivating particular joys and gratitudes, while others appear to be content to take theirs wild and unsolicited.

In my mind's eye, my landscape looks much like north central Idaho, or perhaps western Montana. It is rugged and choppy, coated with mountains and sheer cliffs and whitewater rivers dashing themselves ever downward. It is sparsely populated, and those that are there tend to keep to themselves and be self-sufficient-- no coddling these cottages. Practicality reigns supreme, yet nature itself inspires a veneer of beauty to soften the edges and uplift the heart. Those same rugged mountains are swathed in dark evergreen forest, underlaid with countless varieties of bush and berry and other barks. The seasons change, time inexorably marches on, and even the death that time inevitably brings wears naught but a thin, shimmering mantle, spinning and flaring in the sudden colors of Fall before the cloak is thrown aside and the naked white bones of the world come to the fore of collective consciousness.

The landscape of my illness is part beauty, part blight. Pockmarked scabs of raw gashes in the earth can be found mere steps from a tranquil, dainty pond embroidered with ferns and sweet puffing breezes. I can always find flowers to sustain me, even if it's just one, but the wanton loss, destruction, and waste that I see around me as my world crumbles… it sears my soul with a thousand putrid colors that I dare not do anything with but swallow. Every day is another Pandora's box: the lid is cracked open by morning light, the evils escape and howl through the welkin to begin their outrage anew, and Pandora slams the lid shut tight, having only hope left to herself.

The thoughts and feelings of such a continuous cycle of dismay and disappointment take a heavy toll, and the words do not come easy. They boil and roll around inside of my head and my heart, percolating all the way down to my fingertips… but at the last minute my heavy heart shakes her head and says it's too much, too much, and we're all (all of us pieces parts together) too tired to argue so we cover our eyes and turn slightly to the left, hoping that the results will scatter in the sweetly sweeping breeze. They never do, and I grow heavier and heavier as I wait for the words to finally squeeze themselves from my very pores and splash across the page. I wait for the words to write themselves, to unwrap the weighted intensity of themselves and float out into the world, because I don't understand them while they are inside of me, not really, and if I can read what they have to say about themselves then I just might be able to make some sense out of all of this. My landscape is beautiful, in its own way, but it is also terribly confusing and wickedly deceptive, and I am afraid that someday I may drown in my own confidence.

This video I watched this morning perfectly illustrates what I was talking about yesterday, about meeting myself and not defining my worth or capabilities by my appearance. It's definitely, definitely worth a watch.

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

Having been a part of the chronic illness community for about a year now (or at least on the fringes, watching what goes on), I've come across many a list of what not to say to someone who is chronically ill, or things that chronically ill people don't want to hear, etc. Shoot, that's what Chronic Illness Cat is all about! I think some of it comes from the fact that people with chronic illnesses feel marginalized and discounted by society's understanding of and relation to sickness and the mainstream attitudes that accompany it. I mean, here in America, sickness kinda makes us uncomfortable. So does poverty, pain, abuse, disease... anything that's not happy and shiny and new. Unless it's particularly awful and heart-rending, in which case we'll obsess over it. (This takes me back to my very first post in which I muse about the pursuit and idolization of perfection in society and how that has affected my thinking.)

So with that uncomfortable feeling as the backbone of this attitude, I would say that the muscle and flesh of it is the expectation that all sickness/disease is acute. That is, you get sick and then you get better. Even those diseases that we have claimed as poster children (think breast cancer or AIDS) are of a similar vein; either you get better or you die. There is a definite "end", a trajectory that you can pinpoint your particular location on. Well, with a chronic illness like fibromyalgia or UCTD... there is no trajectory. There is no "end". And that brings me to the point of this little musing/rant.

I get annoyed sometimes by the things that people say when it comes to my illness or my symptoms or how I'm feeling physically. I mean, I get that it's the elephant in the room, since it's kinda taken over my life, but one of the things that irks me a little is when people ask how I am, then tell me that they hope I feel better soon, or better yet, "get better". I'm always tempted to take the easy way out and just say "fine", but I realize that this would only feed the monster. Once I say "fine", the next time that I'm actually honest and say that I feel pretty horrendous the person is going to wish me well so that I can go back to being "fine".

I'll let you in on a secret. Now that my life has altered so drastically, I don't actually mean I feel "fine" when I say that. It just means that I don't want to bring you down by telling you that I feel awful, because you either are made uncomfortable by my physical misery or you will pity me (which is a completely different animal from the genuine compassion that my support system exudes... which is why I'm lying to you and saying "fine", because you're clearly not in my support system.). Also, it could mean that I just don't have the energy to explain why I'm not feeling fine, and what exactly is wrong with me, and that I'm anticipating some sort of advice that I don't feel like dealing with or dodging. This is especially true for very religious/in the medical field/a natural health and healing advocate/some combination of the three/good god help me if it's all three people. Another possibility is that I sense that you are merely making polite conversation and you don't really care how I'm feeling, so telling the truth would only a.) make things awkward, and b.) imply a level of friendship and confidence that I'm not willing to bestow on the likes of you.

I guess it's just that, if you don't know me, then I'm obviously not going to go into gory detail unless asked. (Hey, sometimes it happens.) If we're only acquaintances, then I'll probably go with "fine". But if you know me, even if we're not close or you're not a part of my support system, then you should know that I'm pretty damn sick. You should also know that it's not going anywhere, so wishing me a "get/feel better soon" is basically just blowing hot air up my butt. I'm not getting better, folks. I might be sustaining, sometimes, but barely. I feel like I'm getting worse, just from the sheer numbers and scale of my symptoms. My life is hard, and hearing "feel better soon" feels like a casual dismissal of everything I work so hard to do. I'm upright, and maybe even dressed. Do you know what an accomplishment that is? So telling me to "feel better soon" is just like... so minimizing. Taking it and scaling it down to the level of the common cold. Like telling a double amputee that you hope they feel better soon because you twisted your ankle last week and you totally know how they feel.

It's just that... I mean... "feel better soon". If you know me at all... then you'll know that I won't. I'm not going to. And I don't want to be all Negative Nelly here, but I'm just speaking from practical experience. I mean, yes, we can all hope that I feel better, that my symptoms recede, and that I can live a normal life again, but... I guess I've kinda given up on that. I mean sure, it'd be nice, but my focus has shrunk to dealing with the immediate present, to getting through each day. I might take things a week at a time, but that's about as far out as my scope goes right now.

And you know, I'm sure it comes from a place of "I don't know what the heck to say to you" and "I genuinely care about you and wish you the best". It's just the way that I'm taking it. It's not how they mean it. I know this. But it's still irritating... yet I choose to just let it go, because I know it's on me, not on them, to navigate the world with this handicap. I don't ask them to bend to me, watching every word they say. It's unrealistic and unfair. So I'll just come here, let off the steam, and then make my merry way back into the world. I mean, shoot... I didn't know a thing about chronic illnesses or chronic pain until it smacked me upside the head, so how can I expect everyone else to know and understand what I'm going through and where I'm coming from? There's just no way.

I did two things today. One was foolish, the other was brave and awesome.

We'll start with the brave and awesome. I marched my happy little self down to the local beauty school's salon and got my hair streaked with bright red and vibrant purple. How is this brave and awesome, you ask? Well, I've been wanting to do this for years, literally years, but I've been so afraid of what other people might think (because I have a reputation to uphold, you know) that I never could bring myself to give voice to my personality in that way. But I've been thinking about it a lot lately, and C agreed to pay for it, and then my massage therapist told me today to do something fun, so... there I went. I was supposed to get a haircut, too, but we ran out of time, so I'm going back in the morning. Nothing crazy, just a shorter version of the cute, choppy bob that I loved so much last time my hair was cut. The layers will really show off my new colors nicely. I'll make sure to get at least one decent picture.

The foolish thing? I marched my happy little self down to the local beauty school's salon without taking any painkillers or snacks with me, or even a bottle of water. Big mistake. (Granted, I had no idea how long it was going to take, but it was still a foolish oversight.) I was there for three and a half hours, sitting in uncomfortable chairs, holding the same position... and then I had an HJ meeting afterward, so by the time I got home I hadn't eaten in like, 5 hours. That's bad news for me. I was able to score some apple juice during the meeting, to boost my blood sugar a bit because I was shaking. That got me home, but I was so nauseous and painfully sick from not eating that it almost wasn't worth it... but the black rice and grilled asparagus that I forced down really did hit the spot. I'm super worn out, though. Skipped group. I just couldn't do it. Plus I've got work tomorrow.

It's dumb how just sitting in a chair for three and a half hours can completely knock me on my butt. I resent that. I did get to explain fibro and chronic pain a bit to my hairdresser, though. Of course, because I came in with my walker, it was a natural conversation topic to come up. It made me realize that I'm really interested in advocating for chronic invisible illnesses in my community, but I really don't know how to go about doing it without seeming like I'm complaining or throwing a pity party. I'll be mulling this over, I'm sure... keeping my eyes out for ideas and opportunities.

Despite my mistakes, it was a pretty good day. I'm happy. In a hell of a lot of pain and thoroughly exhausted, but happy.

The past few days have proven interesting.

Sunday, I went ahead and super-medicated myself. I don't know how many painkillers I took that day, because I wasn't even counting. (It wasn't an inordinate amount, but I'm pretty sure it was more than normal. I think. Again, I don't know.) So while Saturday was a day full of pain and despair, I was pretty much walking on clouds the next day... or walking through a haze. Whatever you want to call it.

I'm still dealing with this bout of depression, and all I really wanted to do Sunday morning when I got up was sit around and mope. Fortunately for me, that didn't happen, as C needed some emergency help with her English class. She came over and we worked on it for many, many hours. After she left and I'd taken a short nap, I started the process of streamlining our possessions as preparation for the move. I think I got rid of fully 1/3 of my wardrobe that night, at least! I'm happy about that. I don't like it when I've accumulated so many things...

That morning, Mom called me about K. She had... news.

While I don't mind sharing my own personal details here on this blog, I do recognize that it's not fully a personal blog any longer. There are people who read this on a fairly routine basis, which is all great and fine. I think that's awesome. When it comes to details about other people, though, I find myself hesitant to bare all, because it's not my news to talk about, you know?

So, we shall simply say that K went through a horrific experience unbeknownst to us all, but it finally came out in the open and she's getting the help she needs. Also, knowing about this experience and some of the consequences makes a whole lot of sense out of some things that didn't make much sense before.

My heart is breaking for her, though. I cried when Mom told me what had happened... and it just made me so much more grateful for the life that I have, the life that C and I are building together. We're breaking cycles and changing the future for our progeny. I'm proud of that.

Monday wasn't much of anything, just yoga class and grocery shopping. I did go a little crazy with the impulse buys at the store, though... I spent $60 more than I was intending to! Oops. I know I'll pay it off eventually, and I know that most people wouldn't consider that to be a great sum of money, but that's an entire week's worth of gas and food for me. That's more than I get in a single paycheck. So to me, it's a large sum of money. I don't regret it, but I am going to be more disciplined in the future. (Don't go shopping alone while you're hungry and depressed, unless you've got money to burn, a'ight?)

Today, I had a rheumatologist appointment, and I feel as though we've made a big step forward.

Yes, I got another med, but that's not the point. (The doctor totally supports my decision to get off of my meds in the future, but we both recognize that right now I just need to get this under control. Once it's manageable, then we can talk about dropping meds.) I also got another diagnosis to go with that new med. Or is it the other way around?

In any event, the doctor completely agreed with my suspicion that an autoimmune cause is at the root of the aggravation of my fibro, and she pointed out that I already have two autoimmune diseases under my belt right now. Fibro doesn't count, btw, but it is significant that many of the autoimmune diseases of the type that we're looking at tend to run concurrently with fibromyalgia.

Yours truly has Undifferentiated Connective Tissue Disease. Good news? Less than 20% of patients with UCTD progress to a "well-defined" connective tissue disease, such as lupus, rheumatoid arthritis, scleroderma, etc. Bad news? It's still a systemic autoimmune disease with no cure. Other good news? This changes... nothing. Except for adding a new med, and one that has little to no side effects at that.

So while I've got yet another Big Thing to process, it's helpful that I now have "real disease" label to slap on things, because FMS is still in the shady area for most people. You know, they consider it all curable if only you try hard enough... I keep getting that, "You'll be fine/you'll kick it/it'll get better because I/my auntie/my friend from church has/had fibro and they're all better now!" Hmph.

Also, I've decided to hold off on applying for disability after consulting with my rheumie. We're going to keep trying to get this under control, and if it comes to the point where it's just not manageable after all then I'll pursue disability. Apparently, going on disability at such a young age tends to encourage a "slump" or a worsening of effects. I guess it's a mental thing, like they kinda give up. She wants to avoid that for me if at all possible. I'm all for that. I just hope we can get this under control so I can have at least part of my life back.

And now, I'm off to a hot shower to try to relieve some of this pervasive pain. Ughhhhh. Acupuncture was gentle today, but I seem to be having a very difficult time with healing responses. My body just don't like being helped! :) (But, oh, the massage after every session is fabulous... Again, always very gentle and soothing, no pressure at all, but it feels so nice...)

As the famous philosophical quote goes, "Know thyself," and... I definitely know myself.

I can't sit still. Even when I'm feeling crappy. So I vacuumed the house, and I put away my laundry, and I'm (finally) going to take that shower and then head off to play with the dogs I'm babysitting. I'll do a couple of loads of towels, now that S has unearthed all the towels from his room while moving.

I ordered this book a month or so ago, and I just picked it up to read while I was making lunch. It's called "The Ultimate Guide to Sex and Disability". I did the sneak preview thing that Amazon offers, and what intrigued me was the discussion of self-esteem and disability early on in the book. (Anyone that I'm really comfortable with will know that I need no help in the sex department!) Anyway, I found this little gem that I'm going to be mulling over for a while... especially since I've been seriously considering applying for disability, or at least a handicap parking placard.

The epiphany I had while reading this was that, though I may have to identify as disabled at this point in my life, that doesn't mean that I'll always be disabled. (And I know there are people, like my friend BJ, who would vehemently protest my identifying as "disabled" in the first place, but... I know what I know. I qualify for the label, at least right now, so why bother denying reality if accepting it will help me?) I think that was the major fear that's been holding me back... if I accept this, then it will always be a part of who I am. But that's not true. I may always have chronic illnesses, but I won't necessarily always be disabled.

A good distinction to realize.

Anyway, here's the section that jumped out at me today.

"Coming out to ourselves as disabled can be an important step. The term 'coming out' is usually reserved for people who are disclosing their sexual orientation or gender identity. For example, one might 'come out' to family, friends, or coworkers as gay, lesbian, bisexual, transsexual/transgendered, or intersexed.

The coming-out process is ordinarily something that happens after much reflection, soul searching, and personal exploration. It isn't the end of a journey but rather a point where you are finally accepting a particular identity for yourself and taking the risk of sharing that identity with the important people in your world. You are boldly stating, 'This is who I am, here and now, and it's not worth it for me to pretend or 'pass' anymore.'

The ways that mainstream heterosexual society forces people to pass (that is, pretend to be heterosexual in public) are similar to the ways in which nondisabled society marginalizes the rest of us. Mainstream, nondisabled society has very specific rules for living with a disability.

'After my accident my friends rallied around and visited me in the hospital, sent flowers, all that stuff. After a while, though, I think they just wanted me to get on with things; it was like the disability was yesterday's news. I had done the disabled thing, now I could just stop being boring and drop it. It wasn't like I talked about it all the time, or ignored their needs, but they just wanted it to be a total nonissue, which it could not be, mainly because of access issues and stuff.'

Coming out to others about your disability is, in part, about holding onto your right to take care of your own body and maintain a close connection to it. Knowing when you get tired, realizing your limits, sensing when you're aroused by even the slightest physical cue--all are things that come with practice and are gifts that many others don't have. It's often assumed that disability creates a split between a person and their body because of the things they 'lost.' While this may happen to some, for many of us it's more true that learning to live with our disabilities brings us closer to our bodies." (The Ultimate Guide To Sex and Disability, pg. 22)