Right now I'm in "anger" and possibly "denial". I'm so pissed off at what I've lost, what I have to deal with, what I must endure… I'm just sick of it. Honestly, I'm SO over this.

I continue to deteriorate, despite my best efforts. I can't remember what it's like to have a normal, healthy day. The last time I had a day that I could consider "good" (read: less pain than usual, no limping and stiffness, no flu like symptoms to speak of) was… the 2nd week of April. The weekend that my friends came and cleaned my house for me.

I keep racking up new symptoms, tallying up the worsening of existing symptoms, and I continue to battle the medical system for appointments and diagnoses and whatnot. I am very pleased with the pain doc I finally found, and I think it's going to be a beautiful, long-term relationship.

But seriously… I just have this deep seated anger that I can't shake. What I'm going through isn't fair, it isn't right, and I'm just too young and generally amazing to be incapacitated so! There is so much that I could be doing to better the world around me, but what am I doing? Lying in bed, posting inane things on Facebook, and sleeping (or not). I feel like my life is being wasted, frankly… and that pisses me off. 

I had such promise, such dreams, so many talents, and they are being wasted. I don't feel like I'm contributing anything of worth to the world, or even the relationships that I hold dearest and closest. What do you do when you feel like your life has lost purpose and meaning? When you feel like you have lost purpose and meaning?

It's like… I still have these shreds of rebellion and hope that refuse to die out, but I'm not sure how to feed them right now. I'm just so… lost. I realized the other day (or was it today?) that even when we get my pain under control and some/most of my symptoms managed and handled… I will never go back to "normal". I guess I've been holding on to this fantasy that when I can finally get my pain managed that everything will stabilize and that I'll go back to being the same bouncy, energetic, productive person that I used to be. It's finally hitting me that my life is forever altered. I have no idea what my future looks like-- will it be full of the same untold suffering, day in and day out? Will I ever have a recovery to speak of? Am I going to spend the rest of my life just surviving?

Hell, I don't even know how to adequately articulate all of this. I can't explain what I'm feeling, because I really don't understand it myself. I just know that I'm angry, very very angry, and very sorrowful. I worked so hard to come to like instead of loathe myself, and now here I am again… I feel like all of my hard work has been undone, because I really don't like the person that I am right now. I mean, I like who I am inside well enough, I guess… I'm okay… but I hate the life I have now. I didn't choose this, I didn't ask for it, and I don't want it. Why me? Like, seriously, what the fuck?!

I'm also super pissed off at what this has done to my marriage. We're making it work, and we definitely love each other and all that jazz, but honestly it's hard. Marriage and relationships are hard to begin with, especially when you've got the baggage that I do, but with all of this chronic illness shit on top of it? It's like the odds are stacked against me so high and rising that I can't help but feel I unwittingly made an enemy somewhere who's in charge of all the cosmic, circumstantial shit. I hate how stressed Drogo is, I hate that the stress has killed our sex life, I hate all of the bills piling up and how inadequate it makes him feel when it's no fault of his own at all (and when he's actually borne up under this remarkably well!), and I hate being "that couple" that always has to ask for help from everyone around them. I hate that we don't have many friends, that we can't go out and do fun stuff, and that it's just such a struggle for so long. We have this morbid inside joke that we're ready for our sunshine and rainbows now! Any day, really. lol. But it's the truth. This is just so hard, on so many levels, and I'm sick of it. It's hard enough to have all of the sensations you experience be unpleasant ones day in and day out, but on top of that there's all of the emotional agony and stress to just exacerbate things.

I also hate that I'm fat now. Yeah, yeah, I'm still attractive, blah blah blah, but I'm over 200 lbs now. I have never been this heavy in my life, and it pisses me off to NO END that I try to eat well and I exercise as I can and I got off of the stupid meds that were helping me to gain weight, but I just keep gaining and gaining and I don't see much I can do different at this point. I mean, it's not like I'm eating any junk food at all. We spend $50 on groceries each week for both of us, combined, and Drogo is practically starving (I feel) to make sure that I get enough to eat. He is starting to realize that he needs to eat more, thank goodness, but it's not so bad because he's always been a rather spare eater in general. But I hate that he has to make that decision, and that we have to clip coupons and be so spare and careful in our choices because we have so many fucking bills to pay. I'm tired of actually coming up against the decisions of whether to buy food, gas, or medicine.

I know I'll work through this and eventually (lord I hope so) reach "acceptance", but right now… I'm just wallowing in the anger. Maybe it'll give me the fuel I need to keep going. It's either anger or soul killing despair, so I'll choose the more lively of the two.

I feel like what I'm feeling (and thinking, when I'm coherent enough) at this point in time can be summarized by the two following Skillet songs, "Never Surrender" and "Sick of It." Never Surrender, especially, is almost verbatim what my heart is sobbing to itself. (Emphasis mine, for especially applicable text.)

                                                                "Never Surrender"


Do you know what it's like when
You're scared to see yourself?
Do you know what it's like when
You wish you were someone else
Who didn't need your help to get by?
Do you know what it's like
To wanna surrender?


[Chorus:]
I don't wanna feel like this tomorrow
I don't wanna live like this today

Make me feel better
I wanna feel better
Stay with me here now
And never surrender

Do you now what it's like when
You're not who you wanna be?

Do you know what it's like to
Be your own worst enemy

Who sees the things in me I can't hide?
Do you know what it's like
to wanna surrender?

[Chorus]

Make me feel better,
You make me feel better,
You make me feel better,
Put me back together.

[Chorus]

Put me back together,
Never surrender,
Make me feel better.
You make me feel better,
Stay with me here now,
And never surrender.


"Sick Of It"
If you're sick
If you're sick
If you're sick
If you're sick of it
If you're sick
If you're sick
If you're sick of it!

When everything you do
Don't seem to matter.
You try but it's no use
Your world is getting blacker.


When every time you fail
Has no answer.
Every empty promise made
Is a reminder.

No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

Every single day
I chase my own tail
Like a rat inside a maze
Gotta get, gotta get, get away

I'm running out of time
For me to break this.
I'm tired of feeling like
I'm never gonna make it.


No one can make this better
Take control, it's now or never!

Are you sick of it?
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

If you're sick of it!
If you're sick
If you're sick
If you're sick of it!
If you're sick of it!
If you're sick
If you're sick
If you're sick of it!

I'm tired of it
I'm over it
I'm bored of it

Gotta fix this
I'm sick of it!

Raise your hands
If you're sick
If you're sick of it
Raise your hands
If you're sick
If you're sick of it

Sick of it!
Raise your hands,
Get rid of it!
While there's a fighting chance.
Are you over it?
Bored to death?
Have you had enough regret?
Take a stand, raise your hands...

Are you sick of it?
If you're sick
If you're sick
If you're sick of it!

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

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

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

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

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

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

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

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

So my mom is bipolar.

Yeah, that kind of threw me for a loop as well. I guess it makes sense… but the funny/weird part is that I've been questioned several times on whether I am bipolar or not as well. My psychiatrist, though, says he thinks not. I'm just very… expressive, and I have a wide range of emotions. *Whew!*

And my sister is back in the hospital, because her drug counselor felt that with all of the stressors in her life right now she might swing towards suicidal tendencies again, so he advised her to check herself in while she was still doing "okay". That makes sense, I suppose. Kind of like a preemptive strike. I'm really glad she's getting the help she needs; I hope Mom can, too.


As far as real life goes, I've been sleeping most of the past 2 days. Drogo's truck A/C went out Monday while we were running errands at the peak of the day (just how the timing worked out), and it was probably 111. The heat really got to me, it would seem, because when we came home I went to bed and didn't really get back up until today midmorning. I found out when I woke up around 11:30 last night that Drogo's truck broke on the way home from work. Fortunately, the parking lot he pulled into, which was literally the next available turn he could take, was the lot of his brother's apartment complex! Fortuitous, no? At any rate, that has me kinda panicked because I've got an emergency appt with my pain doc tomorrow, and it's going to be $120 at least. 

We are literally hand to mouth right now; I don't know how we're going to pull this off… except that the mechanic Drogo goes to is real good friends with Drogo's dad and holds the whole family in high esteem, so I think they'll do a payment plan. Just like the chiropractor I've had to see a couple of times in the past week and a half-- he was a teacher of mine while I was studying for massage therapy, so he is extending me a special circumstance payment plan dealie. I was his best student, and we've always gotten along well, plus I trust him as a doctor more than any other chiropractor in this town. Did I mention that I figured out I had subluxated my ribs along my mid back while I was in the hospital? I don't know how you can knock your ribs out while just laying there, but the bed was kinda hard… And then yesterday, while sleeping, I did something to my hip. I'm hoping it's just a pulled muscle and that I didn't subluxate that, too! Wouldn't surprise me, though, with the type of EDS that I suspect I have.

So that's me and my woes. Life is good, though. Drogo is still working, we've got food and so do the cats, and they are hilarious and the light of my life. Gramma will be taking me to the pain doctor tomorrow, and her car is fairly comfy, but the best part is that I know for certain she'll cover gas expenses! Their car is pretty new, and it's nice, so it gets good mileage. Besides, we couldn't take Drogo's truck now even if we wanted to, and it was an emergency appt so he doesn't have the time off. It'll be good to have Gramma with me. She's new to the world of chronic illness and pain, but she and Grampa have both been troopers. She has been with me during several very disappointing and unsatisfactory appointments so she knows the emotions of that, and it was while I was staying with them after the hospital that I found the intractable pain clinic that gave me so much hope and led me to this pain doc. I was legitimately crying tears of happiness, hope, and relief when I brought the information in to tell Gramma and Grampa about it, so it'll be neat for her to come along and actually see the fruits of that.

I accomplished several things this morning, and I'm tired again, so I think I'll tuck in for a bit of a nap. Fingers crossed about my appointment tomorrow! I sincerely hope we can find a combination that both controls my pain and doesn't shred my intestines all bloody.

Oh, hey, real quick-- I wore my tiara to the chiropractor's because it was a tough day, and on the way out his wife/the secretary gave me a magic wand to go with it! It's an iridescent pink fabric heart with some pink ribbon streamers on a slim, pink ribboned dowel. I intend to bling it up further, and take it with me when I go back of course. I just thought that was really cool of her. ^_^
Watching: Eureka, some anime with Drogo, and Cirque du Soleil.
Reading: Just finished Blade of Tyshalle. Don't know what I'll start next.
Listening to: The shop fan in the bedroom.
Thinking about: The pain, why it won't go away or abate somewhat, how I need to eat something, how much I don't want to eat anything...
Making: Probably some herbed rice. I steamed some rice earlier in preparation for this. Sometimes I just craaaave savory, and I don't have much savory in the house.
Planning: How to make sure I don't run out of pain meds early. Possibly getting drunk, and how to acquire some pleasant tasting liquor. (Peppermint schnapps is effective, but I dislike the taste of straight schnapps.) Wondering if there is such a thing as pleasant tasting liquor...
Feeling: Sick. Pain. Longing. Pain.
Loving: When my muscle relaxers kick in super well and I am unconscious for hours.
Looking forward to: Massage next week. Next pain doc appt to get stronger meds. My next visit to the ER. Think I can hold out for 2 weeks? Three? Three weeks is my next pain appt.

Sea of pain

Adrift on a sea of pain… nothing exists but the velvet darkness against my brow like a gentle hand; the gnawing, burning ache of bone and joint as my body devours itself with sharp, unyielding teeth; the snarl of muscle and screech of tendon as my nerves play against each other in discordant harmony… nothing exists but the pain, stretching forward and backward as far as the mind can comprehend. There is nothing but the pain; there has never been aught else, and there never will be. Adrift on a soulless sea of sound...
I'll admit it-- sometimes I get really angry at how "easy" other people have it in their lives. I mean, yeah, okay, everyone has their stress and troubles and hard times but some people just seem to have a charmed life, you know? Yes, my incredibly troubled and grueling life is definitely the source of some good points, such as the personal strength, insight, and empathy that I have honed, but sometimes it'd be nice to just have it kinda easy for a while you know? And it hasn't been. My whole life, without exaggeration, has been one fight or another for sustenance, sanity, survival… what's up with that?

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

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

However

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

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

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

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

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

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

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

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

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

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

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

But folks don't seem to catch that, even after I explain, so… I just let it go. Whatever. Who cares if Cassie's world and future is shrinking and dulling, hope and happiness sloughing off like dried up scabs?
Currently I am...
Watching: Farscape, Kenichi: The Mightiest Disciple, whatever movie strikes my fancy. (Today it was Sherlock 1+2, the Robert Downey, Jr. version.)
Reading: Just finished Wise Man's Fear (again), currently reading The Dragon Book (a compilation of short fiction from various famous authors). I'm technically still reading The Wheel of Time series by Robert Jordan, but I'm still stalled on that one. It got very, very dry and annoying, but maybe I'll get back into it sometime soon Looking for new fiction to pick up.
Listening to: The sound of Drogo's fish tank pump. It's like a mini waterfall. Soothing.
Thinking about: Whether or not my pain is severe enough to warrant another pain killer, upcoming dr's appointments and my great hope-trepidation-nervousness, whether or not I can get Drogo to have sex with me tonight (and how to go about doing that), and that I should drink more water tomorrow.
Making: A bowl of cereal, but I ate it. Making art- painting my walker.
Planning: Dr's appts, what I want to clean tomorrow, seducing my husband, products for my store.
Feeling: Content, painful, worried, nervous, hopeful, fearful, proud, frustrated.
Loving: A tidier house (by a margin), my bathtub (at least 3 hours a day soaking away the pain, or trying to), AZ Green Tea, fresh fruit, motivation, visits from friends, encouragement, evening walks, creative juices flowing again.
Looking forward to: Cleaning my bathrooms, seeing the pain doctor (even if I am super nervous-fearful-hopeful!), FINALLY applying for disability, painting more on my walker and pill bottles, finding new books.