I will be honest. I'm having a tough day today.

It isn't just the pain, though that's there. It isn't just the collection of "other" symptoms, though those are there too. (Seriously, where do these fevers come from?!) It isn't just the lag from yesterday's 4-hour-both-way rides to see my geneticist, though that's definitely there. It's just... all of it. All of it and the mental checklist and morass of file folders for undone tasks that's taking over my life and never seems to get any smaller. I have to do ______ for disability process, I have to do ____ and _____ so I can continue to receive basic medical care, and oh yeah, I have to evaluate whether I'm just not trying hard enough and that's why I'm gaining weight that I can't lose and why I'm taking money at exorbitant rates from my dad who totally deserves better and why I've doomed my husband to a life of "in sickness" with no "in health" and why I quit school and work and maybe I'm just not really trying, you know, to make the most of my days at home? Maybe I really am just lazy, and being sick is a convenient excuse to give up altogether? Maybe I'm not really that sick and I'm tricking myself into feeling more ill than I am?

I think anyone with a serious chronic illness will ask these questions of themselves at some point, especially if they've given up anything significant because of it, and especially if they're still young. I'm just having a hard time with staring down the years and wondering if I'm going to continue to decline or not. I'm doing my best not to, I really am. Sometimes, especially when you don't see any improvement, it's hard to keep at it, to take the meds, to swallow the vitamins, to do the physical therapy, to eat healthy, to look on the bright side. I'm just tired. I'm so tired, you know?

Anyway, the trip to Tucson yesterday was to see my geneticist, the one who actually diagnosed me with EDS. She had gone to a conference last month, and I was eager to hear if she had any insights for me that were new, and eager to discuss some research that I'd been doing into various co-morbid diseases and syndromes and possible other diseases that could be aggravating the EDS. (For anyone who is new and doesn't know what EDS or Ehlers-Danlos Syndrome is, the Ehlers-Danlos society has a nice, concise run-down of the various "types" found in the syndrome family. I fall very neatly into the Hypermobile type of EDS.) Unfortunately, there are no miracle cures as of yet, but she did have some interesting observations on preventative care.

The conversation we had was wonderful-- I enjoy a good discussion peppered with medical terms :)-- and I came away with a clearer understanding of what symptoms lie in the domain of the EDS, what symptoms come with comorbid diseases or syndromes, and what symptoms are the completely unusual outliers that I can focus on in a bid to find more answers about what's broken inside of me. I have a few interesting leads, but I don't really want to discuss them yet, not without further research. Something I am going to try out is kenesio tape, which I'm not really familiar with but she says is great for EDS because it supports the joints and provides compression to aid with blood flow. I've heard of it before, but not really looked into it because I'm allergic to adhesives, but I think I can make it work anyway, maybe with something like "vet tape" that doesn't have any glue. The idea is to be more proactive with splints and braces, to avoid injury before it happens instead of treating it afterward, and that's a new approach for me. I guess I hadn't really accepted my diagnosis yet, kind of hoping that it was all a big mistake or something... but if I'm being proactive about it, then that means that I accept that it's a thing, and that makes it real. It's not like I haven't done that before, but the funny thing about "chronic" is that it drags on through years and years and you have to face things more than once. I've read that chronic illness is cyclical, and I believe that the acceptance is cyclical too. Or maybe it's just a process. Either way, it just feels big and scary and I don't wanna! But on the other hand, if it can make me feel even a bit better, it's totally worth it, cause that means that I can apply that energy that was tied up in feeling crappy and making myself power through so much unpleasantness and I can use it for something productive, even if it's just having a friend over for tea.

Well, whatever. All I can do is keep trying, right? Plodding forward, one millimeter at a time, that's me. Maybe this plodding will lead me forward into a better place. I can only hope so.

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

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

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

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

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

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

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

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

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

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

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
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  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
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  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!