Something dark and hard but also viscous is rolling around inside me today. It started last night, on my walk. I started feeling dark and panicked and choked with grief and just… small and tender and tense. I keep bumping up against the hard edges of this thing no matter how I try to tiptoe around it. Depression? Anxiety? A combination of both? Could be PMS. Whatever it is, it makes me feel tacky and slightly soiled, completely exhausted, and way, way more pissed off than I am on a regular basis.

I'm angry, deeply angry, that I can't just get up and clean my house like I used to. Sure, it was hard back in the day (and now I know why), but it was doable. Now there are a hudred isolated little messes that I can't bring myself to corral. I'm too busy trying to drag my carcass through the day, make sure I take my meds, make sure I eat something, drink something, try not to vomit, futilely fight to stay awake… I'm weak as a kitten, and with less stamina. I hate being trapped in this body. Maybe that's it. Maybe that's the darkness I've run up against--I'm just finally fed up (again) with being trapped and shackled.

Yes, it happens to even the most cheerful and optimistic of us, "us" being those with otherwise invisible chronic illnesses. I don't have a remission to look forward to, just a further "managing" of symptoms that grow ever stronger and more varied as the months pass. I have to wonder, is this future I'm facing even worth all the effort I'm putting into it?

Perhaps I'm just over-exhausted. It was a busy, active weekend, as far as my energy levels are concerned. We spent hours in stores, looking at various things that we are shopping for, testing different mattresses and computer chairs… So exhausting, but also quite fun, because I was with Corey. But maybe my melancholy is simply a result of over-exerting myself during Corey's days off? That could very well be.

I spent some money yesterday, too, more than I usually do. I bought new components for a medic alert bracelet, a few other things… and I started feeling absolutely terrible and panicked later, sure that I'm a terrible person now because I bought frivolous things and I could have used the money to pay off medical bills… even though I took the thousand dollars I got from my late sister in law's life insurance and spent it exclusively on medical bills, and it seems that's all I spend money on these days… Like I'm no longer qualified to be a responsible adult who is good with money because I veered from absolutely necessary living-only expenses. Isn't that silly? I didn't use money appropriated for something else, and I can definitely make up for it in the next year. I guess I just don't feel like I could or should possibly… whatever. I don't even want to think about it anymore.

Whatever it is, I feel physically shitty (surprise surprise), I feel emotionally shitty, and I miss Bob with a fierce ache that won't be silenced. I contemplate getting up, doing the dishes, tidying the coffee table, even making an apple pie… and then I simply roll over and ignore my misguided ambitions. Perhaps later I'll dose up good with my meds, turn some energetic music on as loud as I can stand, and do the dishes and make that pie. Maybe a multi-berry apple pie? I dunno. I've been craving soda lately, too, mostly Coke. Gotta figure out how to get some of that here to the house, since I can't drive and I've got no vehicle… I wonder if I could simply order a 2 liter from a pizza place and get them to deliver just that to me? Hmmm… I'll have to make sure to hydrate alongside drinking soda, of course.

I'm sure my foul and exhausted mood will pass. I've got some exciting news that I'll write about then.

Note: I went and took a look at my "Quotes to keep me goin'" section, and it helped a remarkable lot. There's a reason I keep that page around… lol

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 cardiovascular, hormone, 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?

So I've been having a hard time lately. A really hard time. Emotionally, physically, financially… you name it, it's been tough.

I've been really struggling with this feeling of emptiness inside me that I've named Loneliness. Rather than try to explain myself aaaaaall over again, I'm going to copy and paste a conversation I had with some friends on Facebook today.

 

• Joan Kelley You having a bad day?

  15 hours ago · Like
• 

  Cassandra Russom Bad couple of months.

  11 hours ago · Like
• 

  Joan Kelley I'm sorry. I can't tell you it will get better. I can tell you that you will come to terms with it and reach peace. But you have to morn your losses and that's hard to do when they're still happening. Gentle hugs.

  10 hours ago · Unlike · 1
• 

  Cassandra Russom It's not that… grieving I can do. I'm no stranger to grief, sorrow, anger, etc. It's the loneliness, the reaching out to find no one there, the abandonment and sorrow I feel when I look around and see no one, and the anguish at knowing my husband is purposefully distancing himself because that is the only way he know how to cope with seeing his only love in pain.
  
  Everyone has their lives, and they are living them, and I'm left behind in the dust because I cannot move. I'm forgotten, frozen in time and stranded in place by my pain and sickness. No one has time for the cripple. Everyone has lives, issues, problems, plans… and I don't fit in anywhere. I'm all alone...

  8 hours ago · Like
• 

  Cassandra Russom I've ALWAYS had friends. I've always been independent. This is such a first for me, I can't even comprehend how to deal with it. I actually got on here the other day, bit my lip and ducked my head, bared my heart and asked for help… and got mostly crickets. That hurt so bad… I still cry about that if I think about it for more than a split second. I appreciate those who did respond to my cry for help, but it wasn't enough, wasn't right, wasn't what I was looking for or what I needed. So I continue on, empty and lonely and just… lost, I guess.

  8 hours ago · Like
• 

  Joan Kelley Self pity, Cassie? You're braver than that. Flannery O'Connor had lupus and wrote best selling novels from her bed. You are not being left behind by life or your friends. Your life is what you make it, and you can make it something even from your bed. As one writer to another, I'll tell you I am working on a novel. I've had one book published. It didn't do so great, but it's a damn good book and if I go tomorrow, I'll know I've made my mark on the world in one small way. Come on, girl. Up by those boot straps! I know you have passion in you. Find it.

  7 hours ago · Like
• 

  Cassandra Russom Dude, I just want people to fucking care about me. What's wrong with that? And I think I've earned some self-pity time after being so damn brave so long through so much. I'm like, never grumpy and I'm always happy and cheerful… what kind of sick freak deals with this kind of pain and isn't a raving bitch? Anyway, the self pity party mood will pass, even though the deep craving for connection won't. I've been growing hollower and hollower over the past 2 months… I know I can keep going. I know I will. I know I'm still a badass and I will make my mark on the world, as you say. But… I just want a little comfort, someone to hold my hand and warm my heart while I kick ass.

  7 hours ago · Like
• 

  Rose Suntken I'm sorry you aren't feeling connected, that people are distancing themselves from you. Everyday that you survive the despair you make a mark. Every moment. You are important and though you may not feel loved right now, you are, very deeply.

  7 hours ago · Unlike · 1
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  Joan Kelley Cassie. I've been offering a connection almost since I first saw you on the fb site. Maybe the friendship I offer is not what you want and that's OK. And yes you've earned self pity but it does you no good. It is not your friend. And I know when you're ready, you'll leave it behind. But you don't have to be cheerful all the time although that's one of the things I admire about you. Lots of us care about you. Admire you. And would comfort you if allowed. Ate you site it's all us ignoring you? Maybe there's a little bit of you pushing us away? You're not going to come up with 2 dozen close loving friends. You'll be lucky to count them on one hand. But they're there. Waiting on you.

  5 hours ago · Unlike · 2
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  Summer Dawn Johnston Believe me, if I were closer, you wouldn't be able to get rid of me!!! I think of you every day and I know Facebook on my phone doesn't like me, so if I miss a post, tag my ass or message me! I'll be more than happy to help on any way I can!!!!!! 

  5 hours ago · Unlike · 1
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  Cassandra Russom Joan, I know you have. I'm not spurning that in any way, believe me. I think it's the lack of physical, concrete friendships that I'm mourning. I don't have any good friends HERE, Corey is gone all day, I'm forced to stay home b/c sickness, blah blah blah. I value the friendships I have here online more than I ever thought I would, especially when I'm not in a funk! lol. Are you sure I am not going to come up with 2 dozen close loving friends? Cause that'd be pretty rad. I dunno. I dunno what I'm really asking for, needing. I just… I just want my mommy? I don't know! I just know that there's a big hollow place inside of me that's all sad and empty and I feel all alone and lonely and I don't know why or how to fix it and I'm just so SAAAAAAAAAD!

  3 hours ago · Like

Melanie Collins Pennock The only constant in life is change. Things will not stay as they are. Believe me when I tell you I understand. Friends and family leave when someone is Chronically ill. For many reasons. We are the reminders that it could happen to them. We cannot do the things we used to, eventually those people drop from your life. If I still lived where I grew up, I would have friends from the past. Here, my friends were mainly from work. They went away. I am alone almost all day, mostly. I actually enjoy it. Everyone finds their new normal. You are going through a great loss. The loss of yourself.......but a new self will appear. What is needed now is letting go and patience. Hahaha! Very hard. Think of this time as a learning time. You are laying fallow, like a field in winter. Eventually you will bloom! 

3 hours ago · Unlike · 1

I dunno. I'm like, really mourning… grieving. Grieving for my lost life, my lost friends, my lost self… I just want someone to come in and really, really care for me. I want to be nurtured. I want to be pampered. I want to be babied and taken care of and just… just… have love poured into me and surrounding me like a cocoon, like a womb, where I can just rest and be safe and happy, just for a little while.

I feel empty. Empty and worn out and worn down and tired, so tired of hurting all the time and feeling so sick all the time and when I say all the time I mean every waking moment. There is no break. Some people with fibro or chronic illnesses speak of "flare days" when things are bad, but otherwise sort of getting along in a fashion. I don't know what that's like. I have "normal", which sucks, and every waking moment is pain and nausea and fatigue, but then I also have "flare". That is living hell. It hurts to breathe, hurts to shift an inch, I want to vomit up my insides and claw out my eyes and my brain and peel my skin off and just curl into a ball and burst into flames and burn away into charred ash and just die. I can't eat, I can't sleep, I can't do anything but lay there moaning and staring at the wall or ceiling or whatever, depending on which way I happen to be laying.

I'm sick of this. My pain doc (whom I adore, by the way, and totally respect, and she is my favorite doc ever) is certain that she can help me improve. I want to believe her with all my heart, but I'm also sick of the utter devastation and heartbreak that comes with hoping for improvement or good news with this stupid disease and then having that hope shattered, like a plate glass window being smashed over my head. I stagger, I fall to my knees, I am cut and bleeding, and the doctor walks away like it's nothing.

I just don't know what to do about this emptiness, this longing. It's consuming me. It's killing me. I'm crying frequently and I hate it. I just want someone to love me! Why won't someone love me? Where did everyone go? Why am I all alone? Why am I home alone all day with just cats and movies for company?

More than that… why is my life this way at all?

Why me?!????

Talking with my pain doc at my appointment the other day, she asked me what I had majored in because I really impressed her with a chart that I made and brought her to describe the various symptoms that make up "sick" that goes along with the constant chronic severe pain. I told her I got sick before I could finish my massage therapy course, but I really wanted to go for neurobiology. She said that I should, because I'd be good at it, and I agree. I'd make an awesome neurobiologist, and she's not the first medical professional or scientist or other professional to say so. I am very intelligent. I have a sharp mind, a way with words, a keen understanding and intuition of how data translates to practical application… plus I love the challenge of working with the brain. I just… I have so much potential, and now I'm trapped, stagnating, forced into a living grave by this stupid malfunctioning body. I could be an incredibly productive member of society! I was an incredibly productive member of society. What the fuck?! Why not G, my abuser? Why not my very first abuser? Grampa told me on the trip up to the big city that he had spoken with the social workers when I was taken into foster care after being rescued from that situation, and they told him that all of the red flags were very clearly displayed in the situation. He was grooming me for sexual abuse in the midst of all the physical torture he put me through.

This is a two year old girl. That is how old I was. There is nothing sexual about a two year old girl. I am just… devastated. Angry. …Angry. And devastated. Is there just a huge neon sign above my head that says "Hit me! Rape me! Fuck with my mind and emotions!"? Seems to be.

I just have so many emotions swirling in me right now, and yet there is still that huge hole. I think it must look something like this inside me right now… (Just don't expect the TARDIS or John Crichton to pop out the other end. That would, admittedly, be cool though.)

Well, given that I've got so much time alone, I suppose I could take time to feel through all these feels and actually process through this stuff. I've really not dealt with any of my feelings regarding fibromyalgia. I've just kind of stuffed it all away. It's been too intense to deal with. Maybe it's all just coming out now, and now's the time to face it.

I bought a book off Amazon recently, and it just arrived tonight. (Talk about timing, eh?)

I think reading through this book and doing the little exercises he has in there will help me process through my own journey. I really do. So… I guess I've assigned myself some homework, something to practically address the Loneliness Hole. At least, I hope it will help. Good grief, I'm so glad I have this blog to word-vomit into. Can you imagine if I tried to keep all this inside? I'd explode!!

That's all for now. I've got a raging headache and my body is killing me. It's telling me that the weather is changing, and also that it hates me. Hah. Maybe I'll take a soak before falling asleep. Lucky me, I've got muscle relaxers now, so I can actually drug myself into oblivion. I'm so happy! Now, to exercise self control and not abuse the privilege… but it's soooo tempting… Oh, did I mention that my neon pain doc has me walking 10-15 minutes a day, and making a calendar to record my exercise habits? I'm naming the calendar The Pit of Despair and decorating it with "pain quotes" from The Princess Bride. The header is, "So it's to be torture, then? I can cope with torture." Week one says, "Life is pain, Highness. Anyone who says differently is selling something." Week two is, "You mock my pain! Never do it again. I died that day." Week three says, "Do you hear that? That is the sound of ultimate suffering." Week four says, "I've just sucked one *month* of your life away. Tell me, how do you feel?" She's gonna love it. I told her that she was gonna kill me. She laughed and told me I could do it. I also failed one of the strength tests because I was distracted by thinking about punching her and then deciding not to do it. When I told her she gave me a fist bump and told me I had great self control, so I passed that test. She's awesome.

Okay. On to the soak, then off to bed. I've talked enough for one night. If you've hung around this long… you're either bored, a true friend, inordinately interested in my inner workings (maybe you should consider neuropsychology, or just psychology?), or plotting to kill me. Well, whatevs. It'll be an adventure, whichever one it is. (At least there were pictures, right?) Good night!