A friend of mine, The Artist (as I will call her from now on) took it upon herself to draw me a picture since she figured that my spirits might be down lately since I've been really suffering this last month. She's right-- if you've read my blog at all in the past week or so you can see that I'm really going through an existential crisis type of depression, so this picture really cheered me up.

At first I loved it just because it's so adorable and it makes me smile every time I look at it, but then she explained the meaning that she put into the little details and I love it even more. I wanted to enshrine it forever with the meanings behind it, and this is the perfect medium to do so. First, here's the picture.

Here's what she says about the picture:
I thought you might have been feeling pretty down, so I figure I get back to my drawing board for some inspiration. And I drew you in a renaissance spoon warrior.
I mostly worked hard on the spoon and chest armor. I put a lot of meaning to your outfit and spoon weapon.
The chest armor with the tree symbolizes your family tree. Its braches represent your family and the family that you stayed with. No matter how far the braches spread a way from eachother, the roots will always indicate how much of an impact your family is towards you. The handle of the sword is the tricky part. I places a picture of a heart and a cross to represent the people that you have lost, but give you strength to carry on. If you look carefully you'll see a small vine of a plant (I think is name was David?) and a small crown for the "Chem princess" I think that is her nickname. The handle gives you the grips to carry your burdens and to help you move forward. Lastly, The staff of the spoon blade has writtings on it. They are the vows that C have to you on your wedding day, though I change the words from English to Irish, so it looked cooler and no to obvious of what I was doing. It represent of course how much he means to you, but gives words of strength and comfort.
I figure just an ordinary spoon didn't give it much justice, so I did my best to make it meaningful

I love it. I love it so much. Thank you, Artist, for this beautiful and unexpected gift that warmed my heart and lifted my spirits. I treasure it.
I finished my invitation today and sent it out (electronically) to everyone I want to come. A few people already informed me that they won't be there, and their presence will be sorely missed, but I think it's going to be a grand, fun time. Hope we have enough dessert for everyone! Better to have too much than not enough… and whatever's left over we can freeze and I can nom on for ages to come :D Now… to figure out a prize for the colorfully sparkly winner… (And I sincerely hope that I'm feeling somewhat decent that day and not like totally laid up in bed or something!!)

My birthday is coming up. In my household growing up, birthdays are a big. deal. I mean, we're talking cake and a themed birthday party, even if it's just family. (It usually was, with a  few friends from around whatever apartment complex we lived in at the time.) With the S's, birthdays were an even bigger deal, with the newly-aged person dictating the events and menu of the entire day. When you came out to breakfast in the morning, the table was set with a lace tablecloth and the fancy dishes, and there was confetti scattered on the table and likely a ribbon or bow decorating your chair. I mean, we're talking a big deal.

Fast forward to my moving down south. The first birthday was with my grandparents and some of my friends from the local church came over, but nobody that I was really close with. I made my own (amazing) german chocolate cake, but everyone else had "normal" sheet cake. The next year (last year), I was living with C already. B and J took us out to lunch and had special plans for me. They got the sushi place to put a purple orchid on my plate and they brought out surprise mochi and green tea ice cream at the end of the meal. Also, J and I went shopping at Goodwill after lunch. That was my birthday. Very plain. Nice, but plain.

See, C was not raised celebrating holidays or, as I understand it, birthdays really. He's not the "celebratey" type, which is a shame because I'm the opposite. I'd throw a party for everything if I could! Don't have the money or the energy for that, though, sadly. But since he's not the type to celebrate, I know that if I want a good birthday I have to plan it myself. That's pretty lame, in my book, but it is what it is. I don't have the S's or H to put together a party for me, and besides, I don't think they could top my 23rd birthday party anyway. They surprised me by flying my mom out for an entire week (and J was already up there with me for her spring break!), and then they threw me a big hippie birthday party my birthday night. Oh, and I can't forget the mariachi/country song that David wrote and they woke me up with on the morning of my birthday. Have I mentioned how much I miss the S's, and H, and my life up there? Mostly I miss the people, and the opportunities for awesome and unique experiences. I had so many great life experiences that I treasure the memories of.

Anywayyyy… my birthday falls on a Saturday this year, which means that C has the day off, and I'm so happy about that! My plans and my wishes are a bit different, but my actual plans for the day are such: spend an hour or two at the antique car show going on that weekend (it's a birthday tradition for me), eat lunch and rest for a few hours, have the people that I love and care for most all over for cake, pie, and juice. That means my grandparents and great aunt (if she'll leave the house), the D's, D and J if they can make it (the snake folks), both M's, A (who graciously agreed to make my cake!!), my brother in law and his lady E, C's dad and his gf (if she's deigning to speak to me again, that is LOL), I'll see if K wants to come, and S because he's in town!! Oh, and I can't forget E and M, and I'll see if the girls from group can and want to come as well. It's been TOO LONG since I've seen them. Oh, and C. Can't forget her. (By the way, I'm going to be making the switch to code names here soon… it will be so much easier for reading purposes, I think, than initials. Less confusion. I know a lot of J's.) I might be forgetting a few people right now, but I'll be making a list (and checking it twice, hah!) and running it past C to make sure I don't forget anything.

So that's the plan. What I'd like to do is slightly different… well, not different, because I really want to do the above. (Maybe I'll do something silly like make it a sparkle party and ask everyone who comes to wear something sparkly or brightly colored? Best dressed gets a prize! Oh my goodness, yes… I think that has to happen, despite C's inevitable protests. I need to have some fun in my dreary existence!) What I'd like for my birthday (though it wouldn't all fit in one day, or even be feasible necessarily):
-Get a massage from Brenda/Belinda (can't remember her name) at the massage clinic.
-Go Goodwill shopping and get some adorable "big girl" clothes: a cute shirt, a couple pairs of comfy pants, a pair of gym shorts, a dress that doesn't require a bra that I can throw on when I leave the house.
-Get gussied up and go out to eat.
-Bookstore browsing and buy a book.
-Get new lingerie and have hot sex with my husband.
-Forget the lingerie-- have hot sex with my husband!
-A task force to swoop in and set up my craft room for me so it's useable.
-Try out that Juiced place.
-Eat a turkey sandwich- lettuce (no mayo, alas, but I think my salad dressing will do!), tomato, turkey, maybe some cucumber… all on toasted bread. (Bread! Sweet, nutty, deliciously chewy bread! *sigh* I'm in lust with bread.)
-Get a pedicure.
-Have a cleaning service come and thoroughly deep clean my house.
-Get a cute new haircut and re-dye it red.
-Get another set of ear piercings.

Simple wishes, I suppose. I won't get most or any of them, simply because of financial constraints, but it's nice to dream, eh? I won't be decorating the house at all, probably, for the cake and pie fest, but I am going to have C help me clean it the day before so it's at least decent. Maybe I can wrangle some other folks into helping us, too… guilt trip them about it being my birthday weekend so they can deny me nothing ;)

So a Lite Brite Sparkle Party with cake and pie and yes I'm going to eat REAL cake this year you guys! I'm SO excited. So, so, so excited. I haven't had real cake since… since… um… Well, that german chocolate cake I made for myself a few years back was bomb, and you couldn't even tell it wasn't "real", so I'm just going to count that as the last time I had a good piece of cake. Even M, who is a chef, couldn't tell that it was super allergy friendly! Anyway, I'm excited about celebrating my birthday with those I know and love. I don't expect presents at all, I just want to eat cake with them and hang out. Maybe I'll say, "in lieu of presents, please donate to the Celebirthsary fund so that the couple can enjoy their first anniversary in style!". That would be a good present; a fun Celebirthsary weekend. I know it would really cheer C up if we were able to buy something while there. He's bummed because we're only going to be able to sightsee this trip, with maybe a small souvenir here or there, but nothing substantial… like a weapon. He likes buying weapons at the Faire, and who could blame him? They are well made and fairly priced. You can't find that kind of thing around our town.

(I just told C about the Lite Brite Sparkle party. He seemed dubious. He said he was going to wear his blue shirt, and I said that it wasn't even bright or sparkly at all. He laughed and said he was going to come in last! Funny guy.)

But I know I'm gonna be okay.
Voices, impressions, strident and discordant jumbles shouting in whispered tones to be heard.

Stay awake. Read your book. Write something. Make something. Think on things. Try to puzzle out your feelings.

Oh, feelings. So many of them. I find myself swamped and mired in an inexplicable sadness, a sucking, gasping need to be drowned in affirmation and attention and unsolicited care. I have been harrying C for answers, for love, for affection, for a discussion of feelings and thoughts and other things unpleasant to the male species. I can't explain it any more than I can stop it. I find myself helpless to stem the tide of need and utter uncertainty that wells within me and gushes into the void around me.

Fear. It nibbles and gnaws, creeping into the smallest crevice and dribbling into my thoughts like a sweetly scented sewage, enticing and poisonous. I'm afraid of so much… and there is so much that I cannot even put to coherent thought. It just… lurks. Roils. Turns my insides to mush and makes a jumble of all that I know to be true.

I know his love. I am certain of it. But I am swept away on the current of my own anxiety and broken expectations and grief and disappointment and so many other things that come with the breaking of a young, promising life… my hand is outstretched, reaching for shore and safety and the hands of those who care for me, but they are just out of reach. Untouchable. Straining. Grasping. My fingertips slide past, centimeters from salvation, and I am lost in myself and my brokenness.

Someone save me, please. I'm going down amidst the wreckage of who I once was, and I'm running out of air. I knew how to swim, once; the knowledge has been stripped from me as surely as anything else. I'm drowning. I'm drowning, and even my cries for help feel fumbled.

One thought stands out amid the rest.

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

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

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

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

Why do I have to be so all alone?

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

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

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

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

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

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

I went to church yesterday. It was, surprisingly, a good experience. I mean, I didn't go for the full thing, only the last few minutes of the sermon. I was there, after all, to see some old friends, not to "receive the Word". The bit of the sermon that I caught was amusing. Lots of adjectives applied to those who don't believe, blanket statements and opinions stated as fact. Interpretations of Bible verses touted with supreme confidence that they are interpreted correctly. It was fine. I didn't mind. It's not for me, not anymore, and I know he meant well. He did a good job drawing out the audience, though. Wait, sorry, congregation. Not audience. It wasn't a show, not for them. He did a lot of the quoting of a phrase and leaving the last word out so that the congregation would chime in with the appropriate word or phrase. Several bouts of Amen-ing. He was good. Emphatic. Enthusiastic, in a reserved way, and humorous at appropriate times. He definitely gets points for presentation.

I saw the friends that I came to see, and it was very good to see them. I, of course, was on the walker since I have a hard time getting around without it anymore. It saddened them (and many others) to see that, and the husband, a physician, was very compassionate and understanding about the fibromyalgia pain. When he learned the barest extent of what I'm dealing with, he shook his head and stated emphatically, "No, not you! I don't want you to be dealing with this. I won't let it. It's not allowed." It was pretty adorable. They were very happy to see me, as was everyone else. I made the rounds and said hello to those I know and love, and then hightailed it home while I still had energy to drive. It was fun to smile and hug and share small talk (and give super sarcastic answers as to why I have the walker hehe), but it took so much energy. Even just the brief time I was there left me so drained that I slept well into the evening, woke for a few hours, and then slept again. I was awake for another couple of hours and watched a movie with C before going to bed and getting another full night's sleep. Besides the energy it took to drive and interact, people have a tendency to squeeze or pat when they hug, and of course they don't realize how painful it is for me. I actually had to correct Gramma (yet again) when she hugged me and patted me vigorously on the back, as she does. I winced and exclaimed in pain and reminded her that she can't do that anymore! She was abashed, and hopefully she remembers next time. lol.

I had a talk with C last night that went… well, not that it didn't go well, but I'm just not very good at on the spot explaining my thoughts and feelings. I need time to puzzle them out, smooth them into straight and discernible lines and patterns before laying them out to be seen and evaluated. I thought about blogging through it before talking to him, but I thought I might as well just take the plunge. He told me that I'm not very good at it, and I'd have to agree. So after a bit I will try to type it all out, make sense of it, and then read that to him. I think I got my point across, but it was a bit… muddled. Mushy. Complicated.

We just haven't seen much of each other lately, and I don't like it. I've been sleeping a lot, and he's been gaming online with B a lot, and we've just kind of been… like ships in the night, I guess. Not to mention that I've been so tired and sick and in pain that we have hardly been intimate at all this month, and that is a grievous thing to me. It impacts my sense of well-being in the relationship, but how to remedy it? There really is no way… and that is immensely frustrating. Ah well. Later. More later. I'll reason it all out. For now, I just want to think about my upcoming birthday and how I want to spend it.

Fun fact: I've been toying with introducing gluten back into my diet, so this past week I've been eating regular oats (which do not in themselves contain gluten, but oats are known to be highly contaminated by gluten containing grains in the production process), and have had no ill effects. Yesterday my friend E brought me some goodies from Sprouts, since she was in the big city this week and they have such stores there. I had asked for a certain brand of GF bread but forgot that they also make regular breads as well, so she came back with the flax seed bread that I had asked for… but the whole wheat variety. I figured it was as good a time as any to test out the gluten theory, so I had several slices of toast for supper last night, and some for breakfast. I am pleased to say that I am suffering no ill effects whatsoever, and no gastrointestinal distress or pain of any kind.

I think my gluten free days may be over.

I'm excited pretty much beyond reason. 'Cause oh my word… bread. And the possibilities are endless… I can eat baklava again! Desserts… I can have real cake or pie for my birthday!!!!! I can make a turkey sandwich. Did I mention desserts? Oh, and crackers. Crackers! Italian food. Lasagna. I can eat out at restaurants again! Olive Garden, perhaps? *gasp* I can eat eggplant parmesan again!

You guys… you guysPancakes.

Right. I'm going to stop now. I'm getting myself way too worked up. But man… I'm so excited.
Well, I got the call last week (I think it was?) about the blood tests that the new rheum had run. As he said, he is more than willing to look into the autoimmune side of things, though he seems to feel that my troubles are caused solely by fibromyalgia. I do not accept this. It's pretty plain that I do not accept this, and several of my other doctors agree with me. 

Good grief, I wish there were a way to get them all under one roof so they could put their heads together and share all of the opinions and knowledge about my body and its workings or lack thereof… I get so tired trying to coordinate all the appointments and rides and tests and information sharing. It's hard enough for me to just make it through the day without trying to overdose on something, anything to make the pain go away just a little bit. How am I supposed to expend all this energy trying to figure out how to get my doctors to figure out how to get me better when I'm losing energy by the week, the day, the hour? I don't have much left in me for this, and it's a bitter irony that the increasingly sick person must put forth increasingly greater amounts of effort to receive care the sicker they get. I need a caretaker, for reals. Or at least a secretary. I could wish that C took more of an interest in my health affairs… doing research, knowing my meds and what they're for and how often to take them… or even just their names? It's all left up to me and it doesn't seem fair because he's relatively healthy and I'm not and I just really don't have it in me anymore, guys. I mean, this post alone… it's taken me days to scrape together the mental energy to even type this up. I feel very alone with my sickness very often, but I don't feel that it's fair to complain or even ask more of C, because I am already such a burden. He is such a support for me, so taking care of my own medical stuff is the least I can do, right? Plus there is the whole "hanging on to the last vestiges of my independence as a human being and/or adult" thing. Did you know that, not only do I not drive unless I absolutely have to (it takes a ton of energy, it's usually painful, and I could have a twitching attack/go faint at any time and I don't feel that it's very safe for me to be driving), but it is difficult for me to get the walker in and out of my car by myself? Didn't used to be that hard. Now that I need it more than ever for getting around, it is more difficult for me to access it by myself. This seems to be an increasingly familiar theme in my life, and I absolutely hate it.

Aaaaaanyway, this wasn't supposed to be a rant about my feels regarding my sickness, it was supposed to expound upon my theory that I'm pursuing. Right, so, here's the theory.

The blood tests showed no lupus activity, which is good, but that also means that another potential answer has been crossed off the list. MS and lupus, both of which seemed good fits as explanations for my symptoms, are out. So what is making me so sick, aggravating the fibromyalgia symptoms? There's got to be something. I just keep worsening, and every time I do I'm sure there's no further rock bottom to hit… but I'm always wrong. My mother is understandably quite concerned. While I was back home visiting for Christmas ("back home", as though I've ever actually lived there LOL. But home is where the heart is, and my heart is with my family, so I guess it works.), she told me that she was afraid this was the last time she was going to see me. Not that I'm going to drop dead within the year, mind you, but my physical health has deteriorated so far that traveling is very difficult for me, even just road trips to the big city to see my doctors. It takes a heavy toll, and traveling across the country with all the planes and the sitting and the walking through terminals and… it's all just really hard. Really, really hard. So unless something changes, I probably won't be able to go out there to visit again, and she doesn't have the funds to come out here. Sucks, but that's reality.

She was very taken aback by my physical appearance as well. Several times she made the comment that I looked like a cancer patient. I was pale, weak, dark circles all around my eyes (not just underneath), my face is puffy… I just don't look healthy, despite what people and doctors say. I don't. I may "look good" in that I'm not gaunt faced and jaundiced, but I don't look healthy. I just don't look like I'm dying. On the phone with Mom last week, she told me that yes, I do look sick, and she's right. She is also worried that I have cancer. I know, I know… it sounds like we've been spending too much time with the WebMD symptom checker, right? Well, honestly… (and this is hard for me to admit) cancer is something I've been worried about too. I mean, I saw David wither away, and that was devastating. The Chemo Princess passed away just last week, but she didn't look like he did… at least, not in any of the pictures that I saw. I've had MRIs and CAT scans within the past 6 months, and none of those showed any tumors or anything, but as my symptoms keep evolving it has been concerning me more and more. Burning bones? Really? I mean, what the heck is responsible for that? Because it's not just a minor annoyance but a genuinely distressing, excruciating experience that genuinely concerns me. Stuff like that shouldn't be happening to your body. I may have fibro, but not everything that I experience can or should be chalked up to that. I believe the body will give you warning signs that you can interpret if you are paying attention, and I really believe that my body is throwing up neon signs, asking to be evaluated and considered beyond the scope of "just fibromyalgia".

So I started doing a little research, and I came across this little gem of a website explaining Cushing syndrome. I was curious about how my symptoms may be related to my adrenal insufficiency, since we've got the thyroid probs under control, and when I read about adrenal tumors and Cushing syndrome (not Cushing's Disease itself, mind you; that's something different.) I felt some puzzle pieces potentially fall into place. You see, at first it seemed silly for me to even consider Cushing's, because I have adrenal insufficiency and don't make enough cortisol (which is why I supplement, every day, for the rest of my life) and Cushing's is when there is an excess of cortisol or other adrenal hormones in the system. Doing this research, though, brought me to realize that my endocrinologist has gotten my thyroid levels good and under control but she is doing nothing to monitor my adrenal insufficiency… which could be fatal, given the right circumstances. That's not acceptable, and I mean to remedy the situation. I'm trying to get an earlier appointment than the one I have in 1.5 months so I can discuss this with her. I'm dreading the thought of possibly having to find yet another doctor in the big city, but I will if this doctor doesn't take me seriously and start keeping tabs on my adrenal levels. I'm taking the same amount of cortisol supplement that I have for years, but is that the level my body needs to be functioning optimally? I don't know. I haven't been tested. The only relevant test was where the insufficiency was confirmed.

So what makes me think that this could be part of my problem? A few of the symptoms fit what I'm struggling with: 
  • Purple marks (1/2 inch or more wide), called striae, on the skin of the abdomen, thighs, and breasts
  • Acne or skin infections
  • Upper body obesity (above the waist) and thin arms and legs
  • Round, red, full face (moon face)
  • Thin skin with easy bruising
  • Backache, which occurs with routine activities
  • Bone pain or tenderness
  • Mental changes, such as depression, anxiety, or changes in behavior
  • Fatigue
  • Headache
  • Increased thirst and urination
Possible complications include:
  • High blood pressure
  • Kidney stones
  • Serious infections
I've marked in red all of the symptoms that apply to me. Some are new, such as the striae, the upper body weight gain, the fullness/puffiness of my face, the increasing bone pain and tenderness, and my blood pressure that has been steadily rising over the past year.

One cause of Cushing syndrome can be a tumor on one of the adrenal glands. "Cushing syndrome is caused by constant, high levels of the steroid hormone cortisol. A tumor on one of the adrenal glands causes about 15% of all cases of Cushing syndrome. Adrenal tumors release cortisol. In adults, adrenal tumors are less likely to be the cause of high cortisol levels. Pituitary tumors (Cushing's disease) are more often seen in adults. Adrenal tumors are found in women more often than in men."

Cushing's disease is when the pituitary gland makes too much of the hormone ACTH. ACTH then signals the adrenal glands to produce cortisol. A tumor of the pituitary gland may cause this condition, tumor of the adrenal gland, or tumors elsewhere in the body that produce cortisol or ACTH (such as the pancreas, lung, and thyroid). I know I don't have Cushing's disease, because I don't make enough cortisol and the disease is too much. It's like the difference between hyperthyroidism and hypothyroidism. I'm hypo on the thyroid and the cortisol. If, however, there's a foreign something somewhere in my body that's giving me excess amounts (because remember, I'm also taking cortisol supplements on the daily), then that could possibly explain some of what I'm going through, if not all.

So, this illness brought to you by the letter C. C for cancer, C for Cushing's, C for CFS. I intend to pursue this matter, along with a few other options such as myalgic encephalitis (CFS) or an infection of the Vagus nerve. Lyme disease might not even be too much of a stretch. We'll see. One way or another, we'll see
You know how you just get attached to certain albums and you listen to them so much that you can't think of that period in your life without hearing those songs in your head? It's like having Muzak for your memories. Lately I've had a certain album playing on repeat in my head, and it got me to thinking about the other albums I listened to religiously during those same years. There were a few that really stand out, ones that I listened to so much that I know every vocal nuance and waver, every chord change, every beat of the drum. Here's a sampling of the soundtrack to Cassie: The Teen Years.

Fibro Life Confession: I cannot remember the last time I took a shower… or brushed my teeth. I am reasonably certain that I flossed last week, though...
Still here; still alive. Just been sleeping a lot which is fantastic because I've also been struggling with a lot of pain. Fortunately the other side effects have been pretty minimal, so it's not as bad as when I'm in withdrawals/without pain meds, but pain is pain is pain and this all hurts pretty damn bad.

I have a new theory on some of my health problems which I will elucidate at a further time. Then again, I was also almost entirely positive that I had lupus, soooo… I could be wrong. It's been known to happen. Once. Maaaaaybe twice.

I'm experimenting with adding gluten back into my diet, as I am not entirely sure that I am actually gluten intolerant. I took myself off of it years ago to try to deal with some of the gut problems and other problems and it didn't really help, but when I "cheated" it seemed to be so much worse… but that could very well be because in the circles I ran in at the time whatever had gluten in it most always had soy in it as well, and I am very sensitive to soy. In addition to that, I didn't realize at the time that stress and emotional/mental turmoil messes with my guts big time, and there was certainly a lot of that going on at the time as well… so I asked J to bake me some bread and cinnamon rolls and send them to me. I know they'll be allergy free (well, besides the gluten, anyway) and not some processed junk out of a supermarket, plus I've heard rave reviews of her baking and never been able to try it before. I mean, if you're going to do science, do it with class right?

So that's that. I appear to have messed up my wrist earlier today when I leaned on it. That happens sometimes. I hope it'll clear up in a day or two… it makes typing difficult, and carrying things even more difficult. I'm especially annoyed since that's my book holding hand!

Here's hoping I can get some more sleep, because I am hurting like the dickens. Aren't you just dying to know my new theory on my health? Aren't you? Aren't you? Well too bad! 'Cause I'm going to go nap now. Hehehe. I can't give away all of my secrets at once.

(I'm watching Coraline play with some of the carpet fuzzies off of the cat tree… it's quite humorous. She's on her back with one leg sprawled over to the side like she does, practically bending herself in half as she arches backward to reach the fuzzy with her mouth when she pushes it too far away with her paw. When she finally gets it in her mouth she kind of chews on it for a second and then spits it back out again. The voice-over would go something like, "Pthew! Pthew! Ith in mah mowf!")
I've been sleeping. A lot. As in, 19 hours out of the last 24 a lot. Know what else? I'm going to go back to sleep now. I'm exhausted.
Fuck. Me.

Have I mentioned how much I hate moving around? Well, when I'm in pain. I don't understand this crap, I really don't.

Sorry for the abrupt shift in tone between my last post and this one. I'm less inclined to introspection when I'm being torn apart at the seams.

Get this: M had just left and I was happily playing on my computer when I realized that the kitchen light was on unnecessarily. I wanted to get up and turn it off, but my entire being ached and I just really did not want to move more than anything else. That being the case, I messaged B via Facebook because he was (is still, actually) gaming with C and talking to each other via Skype, which means that C has his headphones on and wouldn't hear me calling. So I messaged B and asked him to ask C via Skype if he would come out and turn off the light because I was/am hurting too much to get up and do it. A minute or so later I heard C laughing and he came out to turn off the light for me. (Did I mention that B is in a totally different country right now? That's what makes this even funnier.) I told him that I would do it but I'm really hurting, and he said that he knew and that's why he did it for me.

Maybe he's not into Valentine's day or elaborate expressions of affection, but that's the kind of thing right there that melts my heart and reminds me that "wuv, twue wuv, will fallow you fowevah…" Gotta love my Wesley.

Speaking of expressions of love, Juneaux is the best chronic illness cat I've ever had. He comes over to cuddle and will put a tentative, exploratory paw on my shoulder, chest, stomach, or thigh. If I allow or encourage it, he climbs onto me or onto the couch behind my head to snuggle, cuddle, and otherwise knead on me and rattle my bones with his purring. If I'm hurting too much to bear his weight or touch I simply tell him "No" at the exploratory paw stage and he will withdraw it and hunker down next to me to lend the support of his presence because he knows I'm hurting. Such a good kitty.
I lie here in the semi-darkness; the room is lit with a weird half glow from the gibbous moon somewhere outside. The darkness is translucent and diaphanous about me, tinged with heady blues and soft blacks and the minute, luminous influence of starlight.

I am alive, vibrant, and humming despite my inevitable fatigue. My body yawns and curls in on itself; my spirit swings wildly in the breeze of my thoughts and flutters on the edge of an abyss. It reaches out with impossible hands to gather the moonlight to myself, to pluck the stars from the sky one by one and place them on my tongue to feel them melt into inexplicable froth and disappear.

The ever present question looms large in the darkness of my supposed rest: what is wrong? Another disease stricken off the list, and I suppose I ought to be grateful for each horrible fate that no longer awaits, each drooling and writhing hydra gnashing its teeth I somehow manage to escape. And yet… I find myself disappointed. Each awful reality would make so much sense, it would fit so well, and yet it all remains enigmatic and foggy… a foe that strikes at me from the mist, and I am helpless to identify it, to strike back, or indeed do more than clumsily dodge blows as best I can and try to staunch the bleeding.

It's not lupus. Well what the hell is it?! It's not multiple sclerosis. It's not this. It's not that. Do I just have the worst case of fibromyalgia in the whole freaking world?! Did I just hit the terrible luck jackpot and I have to live this way the rest of my life? Continually worsening… medications ineffective… barely scraping by financially because everything extra goes towards medical bills and the trips it takes to get me to doctors who might actually be able to do something… Maybe I should just do what a good soldier does and fall on my sword. But no… I've contemplated that so much lately, down to the minutae of planning and taking into account all the loose ends to be tied up upon my demise… and the thing that gets me every time is the mental image of C finding my body. I can't bear the look on his face or the tears. I just can't do it. So I curl up into a ball and whimper while the mist swirls and eddies around me, while the unknown, unnamed, faceless enemy (enemies??) stalks and jeers and jabs and demoralizes.

I want to get better. I want to be better so bad it hurts. (Maybe that's my problem. Hah!) I have so much potential… so much locked away inside because I don't have the energy or strength to pull it from myself and lay it out in the sun. I need an assistant, a minion, a crone… Someone to hobble hunchbackedly to and fro at my beck and call. Someone to take over the menial tasks of living so that I can focus all my precious remaining energy on creative, ennobling endeavors.

I sit here bare skinned, swathed only in quilts and blankets, and even in the dark I cannot bear the sight of myself. It is not that my form is displeasing, per se… but it's because I can see what is inside me and it kills me that I can't be everything that I want to be. On the inside, I am wind chimes and church bells and Tibetan prayer bowls and bagpipes and a hand drum. I am brightly colored beads flashing in the sun, multi-hued fish swishing secretly through cool ponds and rivers, and the whisper of leaves as the weather changes. I am the smell of rain on the way, the eye boggling pleasure of a riotous tie dye pattern, the satin caress of age-smoothed wood, and the soul satisfying release of the perfect cup of tea or coffee. I am so many bright, beautiful, eclectic, warm and neutral, shining, earthy, wildfire things inside… and I can't get them out. I can't be who I really am and who I really could and should be because of this poor broken body that I can't help but hate sometimes. Most of the time I regard it with a fond kind of pity as you would with an injured kitten, maybe with a bad leg. Other times, though, the frustration boils up in me like a scalding magma that feels so good to indulge yet at the same time fills me with a deep and ineffable despair and sadness… because I am not sure that this body, this prison, will ever change. Kitten's legs can heal. My beautiful soul-skeleton is closed in by swaths of pale, chubby flesh shot through with purple stretch marks that were never there before. Sometimes they are beautiful tattoos that tell the story of my Amazonian endurance, and other times they are the ragged cracks through which despair and disgust ooze from my very core as lava from the earth's crust.

So I lie here in the half-moonlight, and I wait. I wait for sleep to overcome me, as inevitably it will. I wait for tomorrow to begin. I wait… I just… wait.
Doctor's appointment went well. The trip was uneventful, the appointment was productive, and we got to see an old friend for a few hours before heading back home. I plied Grampa with questions about his childhood and teen years and was rewarded with many stories about "the good ol' days". The trip back absolutely flew by as we talked and laughed.

The doc wants me to get further allergy testing as well as to continue to pursue the autoimmune/systemic angle that we are working with the rheum. He really thinks that aqua therapy will benefit me, but the only place in town that does it isn't accepting new patients. I must be a patient patient. lol.

He prescribed muscle relaxers to go along with the pain meds, and boy, let me tell you… they work! I can hardly keep my eyes open as I type this, so I'm going to wrap it up and go collapse into bed with my beloved. (I'm seeing double now. Glad I don't drive anymore! This would be super dangerous.)

I ache, from the inside out… yet I am hollow, listless, lonely… I want to climb into the cushioned depths of a silvered bubble and float away into a different world… one that twinkles with soft white lights and the glow of a lover's eyes. I want the world to be beautiful again, for the first time ever, and for my walls to be painted exactly the right shade of dusty grey. I want clean-curtained air and wide wood floors, the ache in my bones and muscles to be a dim memory from the mountain I climbed with my heart in my mouth, the familiar sap of energy to follow the rush of investment in a favored project. I want cups of sweet, creamy coffee and intimate conversations, afternoons of sweat and concentration and "We're gonna do this, dammit!" while working for a cause. I want mundane weekends of scrubbing the floors and wiping down windowsills, of errands and baking and packing lunches for the week. I want entire days of looking forward to an evening out with friends, of trips to the big city for something other than doctor's appointments. I want a day that is not metered by the swallowing of pills, the careful measuring of pain medication.

I want to live inside of the world I collect and catalog on Pinterest, where everything is carefully and intentionally crafted, cleaned and polished and ready to bring that elusive peace and rest to the weary soul. I can't help but feel that if I were healthy… I could make all my Pinterest dreams come true.
What is it about death that makes us grieve? It can't be any kind of concern for the well-being of the one who passed away… Well, ok, maybe it can if you believe in hell and heaven and those kinds of things. But really, they, the deceased, are done. They aren't hurting, laughing, crying, missing you… any of those things. In the case of my beloved Chemo Princess, she's not sick any longer. There is no more fight to endure.

I think grieving is a selfish thing. It's not about them, it's about us. How much we will miss the person, how we feel cheated and robbed of the opportunity to build further bonds and create connections with that person… but that's okay. I mean, we all know it is so unhealthy to lose someone and not grieve. Our lives are pretty inherently selfish, anyway, no matter how selfless we try to be. Even the act of losing oneself in service to God is a very gratifying act for the individual. Those who indulge in self-flagellation to make up for supposed wrongs or to score points with God do so out of a motivation of self… a desire for security, eternal or temporary.

Then again, maybe that's why death is so hard. We opened up our selfish little spheres and brought someone else in. We connected with them, we made ourselves uncomfortable for them at times, we let our lives be about something other than us… and now that's gone. Now we're just a little more selfish than we were… or are we? Does it take a living person to form a connection? Does that connection just vanish once the person is no longer breathing, once the heartbeat stops? I don't know. I don't think so, though… Although no further connections can be made, really, death cannot erase what was. As long as one of you is alive and remembering, the connection stays.

Memories. A way to live on after dying. And what a fragile place to live… memories are so delicate, subject to change and repression and fabrication… But isn't it strange that you can make new memories with someone who doesn't live any longer? I know J created a set of new memories with her father D at her wedding, even though he had been gone for months. But she brought him into the event, and there he was. The plant that I brought home from his memorial… it thrives and blooms like nobody's business. I still have that connection to D with his plant, but he doesn't know it. I do. I am making memories with… a plant… but also with D, because I have connected it to him in my mind, therefore he is still a part of my life.

Our minds are strange places. So are the plains of our soul, littered with emotions, the topography constantly changing. You could get lost inside yourself and never make it back out.

It might be pretty plain by now that the Chemo Princess hung up her wand and tiara. Last night, in fact. I felt no disturbance of the Force, no sudden sadness… but I do today. I grieve, knowing that we will make no new memories together. Knowing that her husband no longer has a wife and her children no longer have a mother… at least, not one that can interact with them any longer. I rejoice because she isn't sick anymore. I rejoice that she is done with pain. I rejoice that she fought hard and well and no longer has to be a warrior. But I also grieve… because she was the warrior I looked to for strength. And if she's gone, how will I keep fighting? I am also feeling some twinges of anger. Yes, I am angry… not that she is gone, but that she is gone and I am still here and sick and have to keep fighting for I don't know what reason… simply because those around me would be sad if I died? What a reason to fight… it's both laughable and honorable. I am angry because she gets relief and I don't. I am angry because this is the second amazing human being with SO MUCH to contribute to the world that has been lost to cancer inside of a year out of those that I love. I am angry because she had a specific enemy to fight--cancer--and I don't.

She and I were kindred spirits. Hippies, lover of good music, theater, sparkly things, tie dye, gypsy wagons… and now I must carry on alone. I have lost a comrade, a mentor, a friend… and I am grieving.

Even in the midst of her battle, she is beautiful.

The family's message of love and support for the Chemo Princess about a year ago.

So today has been one of those good, lazy days. The gang came over for DnD last night, but I was far too tired to make it through more than the first few steps of the encounter. M put me into "Hammer Space", which is basically the "cartoon pocket" of the universe. So I was there, without actually being there, and the real me took off to go take a nap. M gave me one of her muscle relaxers from the accident, since I was hurting and stuff, and it really helped me to get to sleep. I've been having trouble sleeping the past few days from pain, so it was a relief to sack out for a while, and laying down no less! The past few nights have been spent propped up on the couch so I could drift off, since it hurt too much to breathe when I was lying down.

So I slept for several hours, woke up to eat something, went back to bed for several hours, woke up for a little while and had breakfast, then went down for a few more hours. I was awake for a few hours when I went to go take another nap with C, who hadn't climbed out of bed yet. I didn't actually get to sleep, but we did stay in bed for a while, which was nice. (My mood is greatly improved from yesterday, as C has proved that he is still a willing participant of marital privileges. It's been a great relief, I'll tell you that for sure.) Also, a big plus to sleeping in bed is that when C came to bed we were able to cuddle up together. I haven't gotten to sleep-cuddle with C in probably just as long as we've been abstinent, since I've either been in too much pain to touch, not in bed at the same time as him, or sleeping out on the couch. It is such a simple yet profound joy to briefly stir to consciousness and feel your love's warm arm draped over you and his feet entangled with yours. Words cannot describe it, but it's one of my favorite parts of being with C. Is that weird? I don't care. It makes me happy.

When we clambered out of bed we both hopped into the shower and then watched an episode of the show we're watching together. He wandered off to go play a game on the comp and I've been watching Netflix. I'm tired, though, and my tummy's a little upset, so I think I might brew up a mug of tea then crash for however long I end up sleeping. The "nice" thing about being disabled is that I don't have anything pressing to be up for in the morning and I can sleep whenever I'd like. (Well, whenever I can, as the case may be…) There's always a positive, right?

M brought a book over for me to read, and as weird as it is I find myself strangely fascinated with it and I've been reading it off and on throughout the past few days. It's set back in the ancient days of Egypt, but it totally references contemporary Biblical events of the time, which is cool.

I'm totally yawning my head off. Time to hit the hay for a while. I like lazy days… when they're spent with company. It gets kind of boring when you're all by yourself, day after day. I would know.
I made an appointment to go back and see my pain doctor this Monday. A week of this is hard enough (but I've been so good about taking my meds exactly as prescribed! Go me!), and I don't want to do 3 more. Maybe there's another pain med that will help me, oh I dunno… not be bedridden? Pain upon moving and exertion is one thing, but crazy bad pain from just being awake is really, really annoying. And this new aspect of my bones feeling like they're on fire? So over that. (Side note: I sincerely hope that this trip is less eventful than this past Monday's. I don't need any more crazy stories just now.)

Right. So. I wish I had other things to talk about besides my being in sick and in pain. I really do. I'm sure people get tired of hearing about it. I'm tired of hearing about it! I am tired and hurting and cranky and not feeling well, though, so I refuse to indulge anyone but myself. I wish I had some ice cream. I mean hey, if I'm gonna get fat I might as well do it deliciously, right? (On an only slightly bitter note, I am totally eating less than I used to. It's a fact. Consuming less calories and all that. So there, overweight doctor who is telling me I need to eat less because I'm headed towards being overweight. Suck it.)

Guess I'm still kinda cranky today. I can't sleep lying down these past few days cause it hurts too much, so I've been spending my nights propped up on the couch. It lets me get some sleep, but not much, and the quality isn't that great. Naps are great, though. Also, I haven't had sex in probably 2 weeks, maybe more. I wish I were exaggerating. I keep asking C for it, but he keeps putting me off. I think he just doesn't want to hurt me, and I've been really sick.

Please make a note of this, so that at my funeral you can make sure the eulogy includes the fact that what finally drove Cassandra over the edge and made her leap from a tall building was that the pain took away her sex life. (Just kidding. I totally wouldn't leap to my death. I'm afraid of heights! No, no, I've got it all planned out, and heights are not the way I'd go.)

I plan to try to jump my husband's bones today. We'll see how successful that is. I am still pretty sick, and in some pretty serious consistent pain… but endorphins! And seratonin! And oxytocin! And natural analgesic properties!! Until then, I'm watching Catching Fire and trying to distract myself  long and/or well enough to perhaps nap a bit. Another downside of sleeping on the couch, besides the fact that I don't get to cuddle C, is that the cats--Coraline in particular--see it as an open invitation to pet themselves on me and wake me up. Also my mouth falls way open when I'm asleep sitting upright and it dries out and tastes terrible. Who likes that?

It feels weird to be so irritable. I'm not usually like this. I'd rather go back to being happy-go-lucky. I said something to C the other day about some tentative plans we have for a few months from now, tossing out there that, "Maybe I'll be better by then!!" C laughed at me and said that my optimism never fails to amaze and amuse him. He doesn't know, though. Maybe I will be better by then. Maybe.

A girl can dream.

(Btw, if you want to watch Catching Fire online, I found it here. It lags a little, but I think that may just be my internet. I reduced it to 360p and it seems to be doing better; the picture quality is not really affected.)
Do you ever have those days where you're just done, like, as soon as the day starts? Today is one of those days for me.

My sense of optimism has fled. I am tired, I am sick, I am grouchy, and I do not feel well. On top of that, my endocrinologist was giving me grief about gaining weight today, as I knew she would. "You've gained 14 pounds." Yes, thank you for that. 14 pounds in 3 months. Okay, but that's not so bad, you know? She tells me that I need to eat less, since I'm bedridden now. Right, sure. So on top of being in pain all the time, I can be hungry, too? Bite me. In any event, my weight has stabilized. I'm not gaining, but I'm not really losing, either. I'm about as heavy as I'm likely to get unless my eating habits change drastically.

That about sums it up for me. Fat sounds awesome. Let's get fat. And take lots of pain pills. (If only…)

So there's a lot of shiznit going down right now. Health problems, per the usual. I'm a bit concerned as to why my bones are so tender and why they burn. I don't think that's exactly a normal thing. My skin is pulling that "burning" trick to, and I don't like it, not to mention the chest pains and the random arm/leg/hand/foot numbness that's been hitting me. And the dizziness. That too.

Every time I take another plunge downward I comfort myself with the hopes that maybe this is just a temporary flare and I'm going to bounce back out of it and retain the level of "health" that I had a day/week/month ago. I think it's time to stop deluding myself. I've taken another very large step towards being completely disabled (yay pain!), and it's not gonna reverse itself without some medical intervention. Yes, still trying to figure all that out… I hope I don't end up a vegetable before that happens. My mom thinks I ought to be screened for various kinds of cancer. I can't say that I disagree with her.

Speaking of cancer… my friend is dying. My friend, the Chemo Princess, has been battling cancer for the past four years and is now going into hospice care. This is the woman that inspired me with the strength I needed to accept the newfound reality of being a fibromite somewhere over a year and a half ago. She is the one that has inspired me to find the beauty still abundant in my life and to sparkle, shine, and fight tooth and nail through these health problems. She's just so… uniquely herself. I've always been in awe of that aspect of her. I mean, I've known her since I was a kid. It was her wedding photos that made me want to get married in a meadow, which she and her husband did… in garb, I might add. He's a really cool, quirky guy too; an artist. He and his junk/jug band, Deep Fried Pickle Project, have sung some really funny songs. My favorite is "Don't Drink The Juice At The Bottom Of The Pickle Jar".

Anyway, it's just a hard reality to know that someone so awesome, who has contributed so much light, love, and joy into the world will soon be silenced. Like, really? Here we go again with that "why do bad things happen to good people" thing. It just pisses me off that such a wonderful woman and family are soon to be torn apart-- and have suffered so much already!-- and scum like G are sitting safe and sound with nary a problem. (Well, being in prison is probably a problem for him, but he totally deserves that one.)

Ugh. I have to go to sleep. I was trying to wait until the pain killer kicked in, but I really just need to sleep. I've got a doctor's appointment in a few hours, and C is coming with me since he has to run some errands anyway. Tomorrow, if I'm up to it, I plan to try to contact the right people to get a disability claim going. Almost 26, and filing for disability. What a life, eh?

Nah, it's good, it's good… I like being alive. I like it even more when I think of my dying friend, and wonder what she wouldn't give to have more time with her family. It's thinking of stuff like that that makes it so hard for me to end it on my terms. Like, there are people out there that would give anything for more time… so how can I throw mine away? It wouldn't be fair. It wouldn't be right.
So I pretty much had the craziest Monday of my life. It was long, involved, looooong, and there was a great deal of pain present, not just mine. Here's what went down…

I had an appointment scheduled with a pain clinic for 8:30 am on Monday. I couldn't get anyone else to drive me, so M left the ren faire she was working early Sunday evening to crash on our couch and drive me up early Monday morning.

3:30 am-- We hit the road in C's truck. M is driving while I am filling out the 27 pages of New Patient paperwork I printed out the night before. (I never got a packet in the mail.) A few hours later, I doze intermittently while M keeps driving.

6:30 am-- I snap awake in time to scream as M slams on the brakes and hits the car in front of us. Traffic just kind of… stopped… but we didn't. At least, not in time. The car in front of us was pushed into the car in front of them, and was totaled. The car at the far front just had a little bit of a smashed bumper, and they were able to drive away. M was injured in the accident with soft tissue damage to her wrist and ankle but refused treatment because she had to get me to my pain doc appointment. She helped me to mix up my emergency steroid shot and I stabbed myself in the leg for the injection, to avoid going into adrenal shock. An hour and a half of procedures and such later, I took over driving the now snub-nosed truck and we made it to the pain clinic with 15 minutes to spare.

8:15 am-- The secretary has no record of me in their system, and insists that I have no appointment with them. I am devastated, baffled, and slightly upset as they were the ones that called me to set up the appointment. We go outside and I proceed to fall apart emotionally. It's now been about 12 hours since my last pain killer (which was only 1/2 of one since I had been on half-doses that week, trying to make them stretch), and I have no option for getting more. M has an idea, and we pull up the phone number of the pain clinic that the neuros initially referred me to but had turned me away, and sure enough… I took us to the wrong place. It's now time for my appointment, and we're 1.5 hours away. They agree to try to fit me in at some point in the day, and we jump in the truck and book it over there. (In my defense, I have been drugged up on sleeping pills the past week and a half-ish, and the difference between Arizona Pain Institute and Arizona Pain Specialists really isn't that great. I think my confusion is justifiable.)

12:30 pm-- I'm now laying on the floor of the pain clinic, since I can't handle being upright any longer. They take me back to a room so I can lay on a bed thingy at least while I wait for the doctor, and I finally break down into tears from the pain. The nurse comes in, takes my vitals and information, and not too long after the doc comes in. It was a good appointment, and he takes me seriously. He is really happy to hear what rheum I am seeing and says that he's one of the best. He feels that there is something systemic, possibly autoimmune, that is causing the scope and severity of my pain beyond just fibro. (Finally, a doctor that agrees with me!!!) He prescribes me my regular pain killers along with aqua therapy, but I have to pass a urine test before I get my prescription. Makes sense. I make it to the bathroom before throwing up from pain, but then realize that they gave me the sample cup for some other woman. They bring the the right cup, I make it to the bathroom before throwing up (again), and pass my urine test. Sign a contract for responsible usage, get my script, and hit the road in search of a pharmacy.

???? pm-- The CVS down the street doesn't have the meds I need, but they suggest the Walgreens across the street. We get over there, they have the meds, but it'll be like, 30 minutes. While we wait, we fill up the gas tank and hit the Starbuck's for some tea (me) and coffee (M). Keep in mind that M is damaged this whole time, and is getting increasingly stiffer and sorer from the accident. She's still driving me around like a champ, though, limping along beside me and my walker, and even pushing me once or twice. I can barely walk at this point, and my pain has been at a 9+ for hours. I've only cried a little since leaving the doctor's office, but it's getting harder and harder to handle my pain.

As M is getting in the truck after pumping gas, we're approached by some white guy who claims that he's a Marine and served _____ places for ______ months and has $1600 in a bank account, but the bank doesn't have any branches around here and he's going to get it transferred to his wife's Wells Fargo account tomorrow but he doesn't have any money today and he needs to get gas in his car so he can go pick up his four year old daughter from daycare and they charge $20 for every 30 minutes you're late and can we spare some money to help him and he'll even give us his driver's license to hold until he pays us back? I say no, M says no, and he begins to protest. We tell him we don't live here, we're leaving in a few minutes, and he asks if we have an address he can send it to? I'm just like, "Nah, bro. We can't help you. No." He gives up and goes away, and M and I talk about all the inconsistencies in his story, which are many. I knew he was trying to scam us right away when he began swamping jus with unnecessary details. That's a pretty sure indicator that someone is lying to you, trying to convince you of the "truth" of their story.

We make it back to Walgreens and get my pills, which were cheaper than I expected. (Hallelujah!) As we are walking/limping/shuffling away from the pharmacy counter, I suddenly felt very faint and knew that I was going to pass out. I said so to M, "I'm gonna pass out," and knelt down with my head resting on the walker seat. After that, it's kinda fuzzy. I guess I slumped over and ended up on the floor with my face super pale followed by flushing, and was more or less unresponsive. (I remember bits and pieces, but most of this is what M told me and I just kind of gut feel that it's right.) A lady who was standing in the aisle came over and helped M get my sweater partially off so that I could cool down because I was very warm and sweating, and they took the pillow off of my walker seat and put it under my head. The lady in the white sweater held my hands and massaged them to get the oxygen back into them (my hands and face were numb, and I was hyperventilating some I guess) while M pulled my purse off of me. The male pharmacist came over and was also holding my hands (how many hands did I have?!), and another female employee was there as well, I think. Everyone was patronizing me, telling me what a good job I was doing and to keep breathing steadily, deep breaths, in through my nose and out through my mouth. They told me to squeeze their hands if I needed to, as hard as I needed, and as I was writhing on the floor they kept telling me to lay however was comfortable for me. The pharmacist told me to go to my happy place and I laughed. He said that his happy place would be under a race car, scraping off mud. I laughed again and told him that sounded like a crappy happy place. He said something about how he loves to race, anything involving that would be his happy place.

By this time, someone had called 911 and blocked off the aisle so that no curious onlookers could crowd around. (I never opened my eyes through all of this, so I don't know what anyone or anything looked like.) At some point, M tells me that I started screaming. Loudly. I hurt, okay? I know that I broke down and started crying, but apparently I was screaming/wailing very loudly while doing so. I don't recall that. I did wave my medic alert bracelet at them at one point, and they were questioning M as to whether or not we were together. She said, "Yes, we're together. She's one of my best friends!" (That's heartwarming to me ^_^) I somehow told them that the meds in the database for my bracelet weren't entirely up to date (they are changing so much and so rapidly lately!), so M went out to the truck for my big binder of medical info. I am so glad I have that thing!! I think the EMTs were there by the time she got back, but they wouldn't talk to her about what was going on. They wanted to hear it from me, probably to know that I wasn't delirious or anything.

I started getting my breath back and becoming more aware of my surroundings when the EMTs were working on me, so I was able to answer their questions. One of them asked me if I had any medical conditions, and I laughed at him. Then he asked me what medications I was on and I laughed at him again. I mean, I told him, but I laughed first. They got me sitting up, and then standing, and it was decided that I would just take a pain killer and try to make it back to our town. Since my case is so complex, with so many overlapping conditions, there really wasn't much they could do for me besides take me in to the hospital which I did NOT want to do. (We're kinda tight on funds right now, with all this traveling to the big city for my appointments, and ambulance rides and hospital visits are expensive. Not to mention the fact that we wrecked the truck that morning, too…) The EMT guy was like, "We can take you in, but you know your body and we don't. Do you think you'll be okay with just taking a pain killer? Is that what you think you need?" M and I agreed that it probably was, so I got them to push me out to the truck on my walker so M wouldn't have to, since I didn't really want to try my luck walking again. Somehow I ended up with a bottle of water that I drank, but it had no lid.

When the ambulance was at the crash scene that morning, I had insisted that M go with them to get checked out since she was obviously in a great deal of pain. She was so emphatic that she had to stay with me to get me to my appointment, and she was so cocky about how it was a good thing that she didn't go with them that morning or else I would have been dealing with all of that by myself and obviously I needed her. Yeah, yeah, yeah… lol. When the EMTs showed up, I waved vaguely in the direction of M's voice and said, "You're supposed to be the one going with the ambulance, f***er!" (I have found that swearing makes me feel better, but I think I should cut down on the habit since I have been doing it some very inappropriate places lately… such as when my mental capacity is diminished and/or I'm in a great deal of pain. Last time I got a steroid and pain killer shot at my doctor's office, I dropped a very loud f-bomb because it hurt SO. BAD. I thought it was in my head, but C was laughing at me and informed me that it was, well, out loud. Oops.)

The EMTs asked me what my pain level was at once they got me standing, and I immediately answered, "10. Wait, no… 9.5. I'm saving my 10." That day without meds was definitely the most pain I've gone through yet with this whatever-the-heck-disease-this-is. Every time I have to go without pain meds, it's worse. Now though, I've got consistent, established care with a pain doc and I won't have to worry about trying to scramble for meds. Well, I won't have to worry if I stick to the regimen of 4 a day. I know now that I can handle extreme amounts of pain, especially if I have sleeping pills on hand. I just know that I can't expect to have much of a social, professional, or personal life for a while yet. Not on only 4 pain killers a day. I'm not working anymore (which is also contributing to our financial crunch), so that pressure is off a little… I can pretty much just stay in bed. Not that I want to, but I gotta lower my expectations so that I can actually mentally make it through on 4 pills a day, without such a strong temptation to take more. I rationed out the correct amount of pills into my pill organizer and gave the big bottle of pills to C to hide. I told him that I'll come to him on refill day and ask for it back, then when I've refilled for the week I'll give it back to him to hide away again. Seeing the small amount of pills I have for every day will help me be less free with my consumption, because when I have the big bottle I'm digging my pills out of it's easy to think, "Oh I have plenty left… It won't hurt to take one extra right now, 'cause I'm really hurting…" Well, I have to realize that I'm pretty much always "really hurting" now, and I can't escape that.

Anyway, we got me packed into the truck and M drove us back home. The closer we got, the more pain she was in, so I stayed awake to chat with her and distract her from her pain (and mine). At my insistence, we met her mom at the ER as soon as we got into town and I left M with her. Guy M literally ran over to the hospital from his girlfriend's house (his ride fell through) and he drove me home in C's truck. He also spent the evening with me until C got home, which was nice. M finally got out of the ER at about 3 this morning (we got her checked in at the front desk about 7:30 pm), but fortunately she's only banged and bruised up. She was having chest pains even before we began our trip and could hardly eat or drink a thing the whole time, but that was determined to be an esophageal issue, and she will be following up with her primary care for that. (She had me worried! I was like, heart problems? Noooo!) The officer at the scene of the crash was talking to M and I just before we left the scene, and after I told him that I had wanted M to go get checked out he looked at me and said, "Why is she driving if you're not in any pain?" I was like, "Ohhhh, I'm in pain! I'm always in pain." It was funny. There were so many funny moments scattered throughout the craziness of the day, but the moral of the whole story is that M is a badass and an amazingly loyal caretaker and friend. We've decided that in the interest of simplicity, we're simply going to identify as sisters from here on out. It's just easier that way.

C took the news of his crushed truck surprisingly well, but he's definitely distressed about it. He had been planning to pay off a significant portion of the loan on it with his tax return, and also to put a chunk of money towards a new car for me since mine is set to crap out on us at any time. (It makes him nervous to be driving my car around, since he's afraid that it'll break down on him on the way to work.) Instead, he'll be paying the insurance deductible to get the truck fixed, as it's leaking oil in addition to the body work it needs. I'm really glad that it got us through all the running around we needed to do. We also have had to give up on the idea of the Celebirthsary that we were hoping to do, but I'm not as devastated as I might be since that was a tenuous hope at best to begin with. He wasn't sure we'd have the funds for it even before this happened. Guy M said something about how M was distraught over the idea of us not being able to have our Celebirthsary and how they were going to make it happen or some such, but I don't know if C will accept that. He has a proud streak… but I'm not above accepting charity! LOL. I'm just happy we got to go to one ren faire, even if it wasn't my favorite one. I knew that even if we got up there we wouldn't be able to do a nice dinner or go to the adult toy store like I wanted, but we'd at least have a decent hotel room and a day at the faire. But maybe I can put together a stay-cation for us here? Something, at least. I mean, our first wedding anniversary… it's kind of a big deal. Plus you've got our birthdays on either side of it, hence the Celebirthsary.

Oh, for those of you who haven't seen it, this video is the origin of the term "Celebirthsary". It's hilarious because C and I are so much like that couple. I mean, I don't go to trick C, but I love to celebrate anything, whereas C doesn't celebrate anything if he doesn't have to. The man doesn't even want a Valentine's card. He told me not to get him a card for anything, every, any occasion. Hah. Like I'm going to follow that rule!

So yeah. There you have it. My longest, craziest Monday ever. I'm still recovering from it (pretty much haven't budged from the couch), and I almost passed out again this morning, but I laid down in time and got it under control. I ordered myself a small pizza this afternoon and ate the whole thing by myself in one sitting. It was delicious and I totally savored it… until I started throwing it up several hours later. M said he totally knew that was going to happen. I guess I need to stop eating pizza. This is the 3rd one inside of 2 weeks… and I'm allergic to a lot of the stuff that makes it up. If I want to be kind to my body, I'll knock it off. But oh… I want to be kind to my taste buds, too! I figured I deserved an indulgence after a day like that… but maybe next time I'll indulge in something else. Like cheesecake. Except I don't know of any place that delivers cheesecake...

Ren faire!!! Well, the little local one, anyway. My friend K devised an ingenious footrest/sling for the Chariot so that I was able to sit and be pushed around by C most of the time. Despite that, I am very much paying for my outing today, but you know what? I totally don't care! It was worth it.

It was so nice to get out of the house, and I'd hoarded pain pills against this day. I also didn't use them all, so I should (hopefully) have enough to get me through to my pain appointment tomorrow, but only just. I'm trying to spend most of the time in a drugged sleep, surfacing only long enough to pack and prepare for my appointment. I know I'm overdosing on stuff that I'm not supposed to be overdosing, but it's either that or stay awake with the pain and let it feed on itself… which means that it'll take more pills than I have to break the pain cycle. Sometimes, though, I get this nice little buzz, a cozy sort of warm fuzziness, off of the sleeping meds (depending on circumstances, how much I've taken, how much is still in my system, etc.) and it feels good. That in and of itself kind of scares me, but it's nice to feel something other than pain for a change. As of right now, I can feel the last batch I took (about half an hour ago) starting to kick in. My intense headache is being muffled, my eyes are getting kinda heavy, and I just feel a little… fuzzy. And slightly dizzy. But mostly fuzzy.

Want to see pictures of the foot sling? Check it out-- kickboxing wraps for the straps, a couple of carabiners, and a wire shelf that looks suspiciously like a baking rack.

Also, the urge struck me (and I had hours to kill while C was sleeping), so I took the time to do my makeup today. I have some eyeshadow tutorials on Pinterest that I used as an inspiration, since I pretty much have no idea what I'm doing, but I think it came out well. I just hate putting on makeup because it takes so much effort to take it off again! Wish I'd gotten a picture of me in garb as well, but I didn't think of it… so here's me in my pajamas! lol

So today we plan to go visit the local ren faire. I'm inordinately excited, as I always am when it comes to renaissance-themed events. I plan to wear my green dress (the one I initially bought to get married in), and, joy of joys, I can get away wearing it without supportive undergarments! Freeeeeedom.

My friend K devised an ingenious sling of nylon webbing, carabiners, and something that looks like a wire baking rack. It loops over the handlebars of my walker so that I can rest my feet up off the ground and be pushed on the Chariot. It's a foregone conclusion that I am not up to walking around a dusty fairground for hours. I woke up with pretty severe back pain, especially low back pain, so even getting to the kitchen from the couch is a bit of a challenge for me today. I saved pain killers especially for today, though. I will not miss out on more things, just because I'm sick! I'm already having to miss K's wedding, although that's really more of a financial thing than anything else… I missed being able to spend a week with J and had to content myself with just a few hours. I had to give up my job completely this past week (which my heart is still crying about)… no. I draw the line at ren faires. As long as I have someone willing to push me, I will force myself to stay upright and conscious long enough to at least make a pass through. I do have to make a point to take pictures of the ingeniously designed sling, though. Many people have asked for them.

Despite the high pain levels, I am feeling a bit cheery today, probably because I'm expectant about my adventure. I need to shower, but I'm feeling so buoyant that I may decide to do my makeup as well! I've compiled some really neat eyeshadow tutorials on Pinterest, and I've been dying to try one of them out. So far, though, I've not had the energy or the occasion. Seeing as how C recently laid himself down to sleep and won't be up again until 1 pm, I've got hours, so I can take my time and just do a little bit at a time. Once the sun comes up, I will bring my makeup out into the living room and set myself up a little makeup studio. Maybe I'll put on one of my favorite animated movies while I do that. I'd like to re-do my toenails, too, but that is not going to happen today. Too much back and ribcage pain for me to be bent at the waist for more than a few seconds. Besides, sparkly nail polish doesn't ever look abominable, even when it's chipped. Plus I'll be wearing boots.

Oh! Oh! My friend L, who moved to the East coast, is in town this week! She showed up the other night and surprised me :) It was really nice. I was feeling pretty awful (that was after I'd been throwing up, but was recovering), but she already knew the status of my health so there was no pressure. We hung out on the couch together, watched Pirates of the Caribbean, and chatted up a storm. Heyyyy… maybe she'll come back over and do my toenails for me? I'll be seeing her at the faire today, as well.

So far my tactic of drugging myself senseless with sleep aides and Benadryl has worked. I've slept a lot, and it has helped me to stretch out my remaining pain pills further than I ever anticipated. I'm really proud of myself for making it this far. It's been miserable, to be sure, but I'm still here, and I made it work. Now, to just make it to Monday morning… God, I hope they give me a script. I've been keeping track of my pain, (the new blog, remember?), I keep track of when I take my pills, and I've got the timeline of my symptoms and pain, so it's pretty clear that I'm legit. Not to mention the fact that M will be with me and I won't be alone, so I have someone who's seen my sickness firsthand and has taken care of me. She can add valuable perspective, and help me to advocate for myself. I couldn't find anyone else to take me up there on Monday, though I asked around, so she will be skipping out early on the last bits of the ren faire (she's staff there) and driving me up at butt-thirty in the morning. We'll be leaving by 3:30, I believe the plan is.

Have I mentioned that I'm terrified? I'm so scared that they will refuse to help me… or worse yet, want to help me but be unable to. I'm scared that I'll be labeled as a drug-seeker, as a faker, that I won't be taken seriously, and that I will be condemned to try to live with this pain as best I'm able. This is, essentially, my last hope at this point. These are the people who can help make my life livable and bearable. Whether or not I am able to control my pain dictates whether or not I'll be able to participate in life again, to hold down a job, to drive myself places, to have fun adventures, to have sex with my husband, to keep my home in order, to exercise and help my body to be as healthy as it can… It all kind of hinges on what goes down this Monday. And that, my friends, is terrifying.