I got all gussied up to leave the house and go to a dermatologist's appointment this afternoon (read: showered and blow dried my hair and put on mascara, double read: expended huge amounts of energy to look presentable!) to find out what that weird rash dealie is on my chest and neck that I've been dealing with for about a year now. The last dermatologist wrote it off as ringworm, but that's so not it because a.) the treatment didn't work, and b.) it's highly contagious and Drogo doesn't have it, nor do any of my friends who come into close physical contact with me. So there.

I made it to the office on time only to be informed that, while I am in their system, I was not scheduled for an appointment. While this is frustrating in any event, especially when you cancel an appointment and forget or something like that, there's one "minor" detail here that makes things somewhat comical.

They called me.

I've never been to this office before. They are a referral from my GP, and they called me to set up the appointment. I simply wrote down the info that the lady on the phone gave me. The guy at the window said he'd make calls and see where he could squeeze me in with cancellations and whatnot, but I told him not to bother for today. I had other medical related errands to run, and I told him that I have very low levels of energy and just coming out to the office had pretty much used up my supplies of energy for the day and I wasn't able to just wait around or go home and then come back out. I am not physically up to that kind of thing. (Not to mention that my car is out of gas.)

Oh the joys of being a professional patient. I wish I could say this was the first time something like this has happened to me, but… it's not. It's rare, thankfully, but it does happen. How it happens, I have no clue (because really, you called me! I still can't get over that!!), but it does happen. Have you ever had an experience like that, either medical or non-medical?
Here's the summary of my weekend that I posted in various forums and places on Facebook this weekend:

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

So they just left… but three friends of mine conspired with my husband to show up and clean my house for me. They are from several hours away and were going to be coming to town for other reasons, so they were going to come and see us *anyway* to say hello, so they figured they'd just take care of me while they were at it  One of them, who I actually met for the first time yesterday, is a licensed massage therapist that has worked with fibro patients previously, and she gave me a foot massage yesterday and a back massage today. They did the dishes that I've been too sick to do for three weeks (yeah, ALL my dishes have been dirty for three weeks-- gross!), and I didn't realize how dirty my house had actually gotten until they cleaned it! One of them took nearly an hour to soak and nitty gritty scrub my bathtub so I could soak in super duper cleanliness, bless her heart.
I did what I could to express my thanks (beyond crying when I comprehended what they were here for when they showed up yesterday, of course!) so I made them little gift baskets last night and wrote them thank you cards with their names in hand-lettered calligraphy on the front and stamped wax seals on the envelope flaps. (Wish I'd thought to take pictures. Oh well.) They were so pleased! You'd have thought I'd given them the moon  The lesson I learned from both giving and receiving this weekend is that while it pays to give, it also pays to receive graciously and with humility and pure gratitude. It meant a LOT to those girls to be able to do something so obviously meaningful for me, even with no apparent reward anywhere in their future beyond my and Drogo's gratitude."

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

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

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

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

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

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

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

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

Sometimes you need someone else to say something to remind you of a simple truth that you yourself may have forgotten, for whatever reason.

My simple truth is that my husband and I are fighting a hard battle and we are fighting it well and with much love.

Our former roommate is moving back up to the northwest for good, and our small knot of friends are having one last fling before he leaves in a few days with Olive Garden, various types of alcohol (for those who imbibe), and Dungeons and Dragons.

As Drogo, the roomie, and I were in the truck earlier during various stages of errand accomplishment (i.e. fetching food and liquor), the roomie (whom I will call The Viking) suddenly and seriously said to Drogo, "You know, I think you're a better person than I am. What you guys have to deal with, her being sick and all, and how you handle it… I just don't think I could do it. I mean, you just deal with it so well. I can just see the love between you two, and it gives me hope. But I don't think I could do that, and it makes you a better person than me."

We talked about it briefly, but it has been resonating around the inside of my head like the aftershocks of a gong ever since. It is so easy to get swallowed up in the sheer frustration of it all, to let the unspoken thoughts and words and fierce primal screams build up like sandbags against the doors of my heart and keep him out, keep everyone out until I am just alone, forever alone, rocking back and forth inside my own head and keening my sorrow and my loss and my pain to the hollow stars. But I can't let that happen. I've been trying to be proactive about communicating with Khal Drogo, about adapting our relationship around what my sickness is and what my abilities are, but it can be very difficult when I can go days without hardly seeing him at all because I am sleeping almost around the clock due to the fatigue that comes with my diseases and side effects of medicine and being worn out and worn down from such constant levels of very high pain.

Today, though, I was reminded of the simple truth that we are fighting a hard battle, and to go easy on us. There is no manual for this, no way to make it easier… and there is no one to take the pain and the symptoms for me to make it easier for either of us. There's a lot to deal with, any way you slice it.

We are fighting a hard battle, both of us, but we are fighting it well and we are fighting it with much love.

Update: 04/12/14
I mentioned the thoughts I had on this subject, basically a very distilled version of this blog post, to Drogo last night as we were out meeting friends for dinner. We were in the parking lot awaiting their arrival and I was keeping up a steady stream of conversation to distract myself from I-need-to-scream high levels of pain. I told him that what we are doing is very hard, but we're doing a very good job and there's no manual for this at all. It's unprecedented. He kind of paused for a moment, thought about it, and then said, "Yeah, we are. We're doing a really good job. Most people would crash and burn." It wasn't much in the sense that he didn't wax eloquent, but I could tell that it was both a novel concept to him and a very heartening one. It is something that will bolster him for the coming days as this fight for our marriage and our happiness and our life together continues. He's a good man, and this is a hard fight; he fights it well, and with much love.
Well, it's all been a nonstop fit of giggles over here, I can tell you that.

Oh, wait, what's that? Sarcasm? Yep. You caught me.

Not much happening in my life. I guess that's what happens when you're disabled… it just gets kinda boring after a while.

Oh, wait! There is one thing. I don't know if I mentioned it, but I made the decision to become re-involved with The Healing Journey now that I know it's "just fibro" and not going away and probably not getting better anytime soon. (That reminds me-- I need to recap about the profitable pain doc appointment that I'm actually happy about. I know, shocker right? A doctor's appointment that went well? I'm at a loss for words too.) I told Star that if she can give me a ride on Wednesdays I want to attend the teen girls' peer support group. I did warn her that I am not reliable or dependable by any stretch of the imagination, so don't count on me, but I want to go even if I feel terrible which I likely will. I'll just feel terrible there instead of at home. I miss being involved in something altruistic, something outside of myself. I miss giving back, giving of myself… I miss being useful.

On that note, I put my talents to good use and whipped up a flyer for the Child Abuse Prevention Fair that's coming up. Someone else had put together a flyer before I got my hands on the info, and I'll show you that one too just so you can see how the HJ is faring without my particular skill set…


A distinct difference, I should say. I'm proud, and rightfully so. Nothing wrong with being proud of a job well done.

Anyway, the sun is coming up and I'm going to try to drift off to sleep again. I managed an hour's worth of sleep earlier before I woke myself crying out from pain, but I got many hours of sleep throughout the previous day so it's not so bad. It was "one of those days", a particularly rough one for symptoms and pain, but I was fortunate enough to be able to sleep through much of it. Besides, it's not like I have anything pressing going on later anyway.

Oh, I almost forgot-- it's Drogo's birthday! He's 28 now, practically ancient. It is strange to think that, by all rights, we are both still so young and yet… this is the oldest either of us have ever been. Hmm.

For my 1000th post, I thought I'd do a little something different, something fun. Here's a cool "about you" questionnaire that I got from another friend's blog. It intrigued me, so I thought I'd bring it on over to the dark depths of my lair.

1) If you could change something about yourself, what would it be and why?
I suppose the obvious answer would be that I would change my health-- I'd wipe away all the chronic illnesses and give myself a clean bill of health. I wouldn't remove it from my past; I've learned far too much from my illnesses to want to lose that. I would remove it from my present, though, because I have so much potential for making the world a better place that is going unrealized due to my limitations and it is incredibly frustrating. Also, I really really really miss backpacking and traveling. And do you know how nice it would be to go out for Mediterranean food again?!

2) What’s the farthest you’ve been from home?
Honduras, definitely. Although I supposed you'd have to define "home", since I've lived all over Still, no matter where I've lived, Central America is the furthest I've been from anywhere in the States!

3) What is your motto? 
If you have a pulse, you have a purpose.

4) What are your hobbies?
These days? Pinterest. Hah. Reading is a big one, as is writing, though I don't do that one as much anymore since it takes so much energy. I'm an avid movie watcher now, too, and I continue to be an artist. I used to hike, work, backpack, travel, cook, clean all kinds of things. That's a bit curtailed now, but I still enjoy myself. Oh, and sex. Does sex count as a hobby? 'Cause it'd totally be my favorite.

5) What is your favorite ice cream flavor?
My lifelong favorite flavor has been Pecan Praline, but I'm almost equally as passionate about Pistachio.

6) What two things could you not do when you were a child, but you can do now?
Um, well, drive. That's one obvious one. Another thing is write in cursive. In fact, I have a difficult time writing in print anymore-- my default is cursive. I blame that on my school. From fifth grade on, students were only allowed to use pen and were only allowed to write in cursive. Why? To make us more careful, I guess, and encourage better penmanship. I dunno.

7) If you could travel anywhere in the world – where would you go and why?
Ireland, Italy, and Scotland. Ireland and Scotland because they are in my ancestry and I have a fascination with the long and bloody history of the land and the people, not to mention that the land itself is utterly stunning. (To that end, I'd love to visit England, too!) Italy, because of the history of the Renaissance there-- the art, the science.. the FOOD! I want to see the museums and the buildings, and Drogo was raised there for a time.

8) Have you ever met a famous person?
Yeah, a couple. They're just people that a lot of other people know exist is all.

9) What is your least favorite thing about yourself?
Definitely my self-consciousness.  I dislike being so affected by what others think of me, despite my best efforts.

10) One word that describes you?
Quirky.

11) If you were a crayon, what color would you be and why?
Metallic teal, because that's what color I've been on the inside since I was a child. That, slashed with streaks of razzleberry.

12) What is the weather like right now where you are?
Shifting clouds through a blue sky, patchy bright sunlight, kinda windy, but still pleasantly warm though on the cooler side.

13) How tall are you?
5'6. Depending on the the scale, sometimes a half inch gets added, but I just call it even.

14) When you were little – what did you want to be “when you grew up?”
Several things. A marine biologist, passionately; an apothecary (I had a little cupboard with small jam jars I had washed out and kept dried used tea herbs in that I would mix together to make concoctions and "cures"); an opera singer; a ballerina; an author/poet… probably more, but those are the ones that I can remember most vividly.

15) Toilet paper. Roll with paper coming off the top or the bottom?
Used to be an off the bottom girl, but Drogo is rabidly insistent about it coming off the top so I've adapted.

16) Favorite sport you like to watch or participate in?
Not a sports girl anymore, but I was big into soccer as a kid. I was an excellent goalie

17) What kind of food do you prefer eating when you are out?
Sushi. It's about all I can eat these days, out and about, although now that I've added gluten back into my diet I'm able to eat more. I had chicken alfredo at Olive Garden the other night for our anniversary dinner! It was so good.

18) Last movie you watched?
Black Death, last night. I'm right at the end of Save The Last Dance as I type this.

19) Would you like to be famous?
Nope. I don't need that kind of pressure or stress. I struggle enough with people's expectations as it is.

20) What book are you reading?
Hah! Which one? I finished Eragon last night, so I'm working through Eldest today. I'm on book 6 of the Wheel of Time series, I'm also going through Frankenstein again, and I feel like there are some others that I've forgotten or set aside that I can't recall at the moment.

21) If you have $5 million to spend in 5 days, but with the clause you could not spend any of it on yourself or your family, what would you do with it?
Well shoot I dunno! That's tough. If I couldn't spend it on myself I'd automatically want to spend it on my family, but I would donate to my favorite charities as well as send money to my friends with chronic illnesses to help allay their medical costs. (For instance, see this short little post on the monthly cost of chronic illness by Chronic Mom.)

22) If you knew that you could try any kind of work/employment and that you would not fail, what would you attempt doing?
Advocacy of some sort, I'm sure. Or massage therapy combined with abuse recovery and advocacy. I'm always afraid of damaging people more than helping them, but if I knew I couldn't fail? Heck yeah. I'd be all over that. Definitely a helping profession of some sort.
So in all honesty, Hope's comment on my last post stuck in my mind and irritated me, like a splinter just under the skin or a grain of sand under the lid of your eye. As I am wont to do, I poked and worried at it, trying to figure out why it irritated me so. After all, if we can't learn about ourselves and improve and enhance as time goes on, why bother thinking at all? What's the point of introspection?

Anyway, I think I'm on to something. If you've not been in an intensely abusive, dangerous, or dysfunctional situation for an extended period of time, you won't understand. You just won't. I'll try to explain it in simple terms, though, so that I can get the words out of my mind and my heart, spit them out like gravel so I don't have to chew on them anymore (though truthfully I know they'll be rattling around in the back of my head for weeks to come now, if not longer).

I was raised in a sea of destruction. I never learned how to swim; I simply managed to avoid drowning.

I've never wanted anything more in my life than to be accepted for who and what I am, completely and without reservation.

I don't know how long it is in terms of years, but it's been the majority of my life thus far: I have not been accepted but punished and penalized for simply being myself, for being a child, for being exuberant, for being honest, for being… anything. The disapproval of myself was not just cold disapproval or disdain, it was actual physical danger on top of emotional (and often physical) damage, wounding, and scarring. My mind was broken. My heart was broken, again and again. My trust was broken. Who I could have been, should have been, was shattered, never to be restored to its original glory.

The circumstances I grew up in were such that if I failed to obtain complete approval I was in danger, both metaphorically and literally. I had to be pleasing in all aspects, or I would "get it". I couldn't mess up, couldn't be wrong, couldn't be displeasing in any fashion or I would bring pain upon myself and possibly (probably) others in my family, which is an exquisite form of torture in and of itself for someone as protective of loved ones as I am

All I've ever wanted is to be accepted for who I am. To not be rejected for being myself. To be approved of, to have my efforts thought well of, to be thought highly of for simply... being.

My beloved Desert Rose has mastered the art of disagreeing with what I do at times, yet loving me entirely and accepting who I am. Even when she speaks words of correction, I never feel endangered, challenged, or belittled because I am safe in her love.

My mother has been my safe haven throughout my life. I know that, even if she disagrees with what I'm doing, she never thinks any less of who I am or even of my motives for what I'm doing. She holds me in the highest regard, even if and when I have disappointed or angered her by my actions.

When I receive criticism, words of correction from those who have the best intentions and are just trying to help, well meaning suggestions, out and out disagreements and challenges of my thoughts/beliefs/opinions/courses of action, it is a message emblazoned across the sky that I reject you and your best efforts. You are not enough. (Again.) You have failed. (Again.) I reject you and your efforts. Pain is coming, and whatever negative things you experience are all your fault. Whatever pain occurs to those around you is all your fault. 

If this was the core message that every well-meaning suggestion was automatically translated into without your realizing it, would you not be touchy as well?

I recognize it, to a degree. I recognize it more, now. That doesn't stop the feelings from coming, the sickening swirl of grief and guilt and resentment and anger that simmers in my mind and burns deep in my belly. Something is broken deep inside, something that I personally have no way of fixing, at least not as of right now.

I'm tired. All my energy is used up fighting to survive each day, making sure that I'm still around to smile at my husband when he walks through the door at night. (It's harder than you think.) I don't have the wherewithal to make any changes that I myself don't see the benefit of, and I resent suggestions for change or improvement because it suggests that what I'm doing isn't enough, isn't good enough, that I'm not good enough and if I were then I would be better at handling all this.

I'm starving for affection, for attention, for acceptance… especially now that I'm a crippled, huddled little bird. Oh I'll fight and flutter, all right, but is that simply wasting my life's energy to no end? I can't tell. Am I getting anywhere? I don't know. I'm so raw, so vulnerable, so exposed… so adrift on this stormy sea of uncertainty… So tell me, Hope, how can I know what to expect of people when I've never done this before? I've never been sick like this before, been isolated from friends and family by hundreds and thousands of miles before while having my independence so utterly and completely stripped from me. What would you have me do? What do you want from me?

I am doing the best I can, and exhausting myself with my efforts. It's all I can do to make it through the day. I don't have energy to spare to instruct those around me on how to relate to me. Let them, with their seemingly boundless reserves of energy (in comparison, anyway) figure it out. I'm too tired. Too tired, and too broken.

I just want to be accepted for who I am… rants, ravings, and all. Even if it is completely insensical to expect it from anyone.
Prolly more thoughts on this later, I dunno. Right now I'm just copying and pasting a post I sent out in one of my closer-knit fibro support groups this morning.

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

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

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

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

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

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

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

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

Suck it, actress lady. You have your ways and I have mine, and mine are fucking awesome. And no, I'm not still bitter. :P