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 watched an anime with Corey last night that really tore me up. There's a stray cat that "adopts" one of the main characters and it's black and lovey and adorable little kitten thing, and through the few episodes it shows up you watch how it just adores this girl and she adores it and they're so happy together… and then it gets hit by a car, but it doesn't die right away. She finds it and it dies in her arms and she (and I) both basically lose it.

I thought I was over the loss of Bob and Cortes, but this silly cartoon brought back all of the grief as if it were totally fresh, and I have been mourning so HARD since then. One thing leads to another and I find myself grieving all the losses of my life at once, and I am paralyzed.

The really, really hard part is that if I had done just one thing differently, both might still be alive. With Cortes, I saw the puddle of antifreeze that had leaked out of Corey's truck before Cortes ever got to it, and I knew that I should sprinkle kitty litter over it to absorb the antifreeze so one of the cats wouldn't get hurt, but… I wasn't feeling well, and I was in pain, so I decided to leave it for later. I had the front door open to let in the lovely spring air, and that's how I saw Cortes lift his little face up and lick his mouth when he had lapped up most of that puddle of antifreeze. I didn't see him soon enough to stop him, but I had seen the puddle maybe an hour earlier and had chosen not to do anything about it, and he died because of my selfishness.

Then there's Bob Cat. He and I both grieved terribly for Cortes, he especially since they were litter mates and had never been separated. Bob had never been alone without his best friend before, and he would walk the house, crying for his brother. It was very distressing for both of us. He eventually got over it a little, as did I, but he didn't perk up entirely. I thought maybe he was still depressed, but he got a respiratory infection type thing and it lingered on for a few weeks. I took him to the vet to find out what was wrong, and it was discovered that Bob had feline leukemia, something he had probably contracted from some other cat in our neighborhood. I could have had him vaccinated, but I had chosen not to because we were struggling to pay for my medical bills already, and we didn't want to add vet bills on top of that. It's not an expensive vaccination, but I thought that I could gamble and win and thereby save money for my medical problems. My decision cost Bob his life. Both of the brothers lost, out of the blue. No warning. (Now I'm very paranoid whenever any of the cats seems to be looking a little run down or displays any kind of health problem.)

I miss my little babies. I raised them from newborns! They were my furry children and I miss them so much, and I hate myself so much for being so selfish that they died before they could even become full grown. My anger and my grief over my lovely babies of course brings up all of the feelings of loss and anger I've had to deal with over the past 5 years, and I feel like it's too much. I just want to lay down and not wake back up. I'm so tired, and I hurt so much.

I have been comforting myself with the knowledge that, had Bob and Cortes not died, I would never have gotten to experience the love and silly quirks of Fancy and Vladimir, both of whom I love deeply. They make me laugh often, and along with Juneaux I am often overwhelmed with their love and loyalty to me. I'm just afraid that I'm going to make a wrong choice somewhere along the line and lose one of them as well. Or worse, one of my people.

I'm just hurting. Hurting and worn down and tired and depressed and really, really frustrated all of the time. I feel like calling myself "princess warrior" is a stupid joke. There's nothing I'm dealing with that I can actually fight or change. I just try not to think about all of the crappyness, distracting myself with books or movies and such, but sometimes a memory or a feeling gets triggered and you just can't help yourself. Writing all this out makes me feel better, actually, along with the irrepressible and all consuming sobs and wailing.

I have some stuff for the weekend I need to get done. Hopefully it'll help distract me a bit, and I'll probably end up blasting some music that always makes me feel better while I work. Either that or I'll nap for a bit, THEN blast the music and work. I'd rather curl into a ball and just fade away, but I've already made promises, so… trudge on, I shall.

You remember yesterday/last night/actually early this morning, when I was musing about how I want to leave a mark in the world, to do something important and worthy with my life? The gist was that I couldn't really fully put into words what I was longing for, but I've found it! I found the words to explain my mission! Whenever I read the Hands Free Mama blog, it's perfect timing for something, either a struggle I'm going through or a thought or philosophy taking shape that needed a little guidance and a shove in the final direction. This time, I came across this article called Your Most Important Role, In Case Someone Forgets, and I'll go ahead and copy the sections that jumped out at me the loudest.

I ended up taking that two-hour drive with Scott. I can’t even remember if he got the job; I only remember the look of gratitude on his face when he dropped me off, saying he would have been way more nervous if he’d gone alone. All I’d done was simply remind him of what he already knew—the good stuff we tend to forget about ourselves in times of doubt, stress, uncertainty, and fear.

Over the past two decades, I’ve referred to that experience many times: As a special education teacher looking into the eyes of a young man who killed his pet … as a mother whose Noticer of Life child admitted she felt “different” from the rest … as a confidant whose friend confessed dark truths she thought made her unworthy of happiness and true love.

“You might not be able to see it right now, but you hold great value,” I’d said to all of these precious people. “I see your value. And I am here to remind you when you forget.”

I have a dear friend who has written a literary masterpiece coming out in April that “illuminates one highly dysfunctional family’s tentative, desperate crawl toward a life of meaning and worth.” My friend says it happened largely because I believed in her. What Katrina doesn’t understand is that I had no choice. Her gift was so obvious and so needed in this hurting world I simply could not let her give up.

While working on the manuscript for my third book a few weeks ago, I needed grammar assistance. I knew exactly who to go to for help.

“Thank you, literary genius,” I texted Katrina after she provided exactly what I needed.

“You’re welcome, soul changer,” she wrote back.

I began to cry.

Out of all the things I could be in this world, I couldn’t think of anything better than that.

Soul changer

I never had to ask my friend what she meant by the term.

I knew exactly what it meant because of the experiences I had with my husband, my former student, and my child.

It means seeing someone’s inner light when he cannot see it for himself. It means putting your hands protectively around her light through upheavals and uncertainties so the precious light doesn’t diminish. It means reminding people of the beautiful things they know, but tend to forget, about themselves.

And I don’t do it for others due to noble reasons; I do it because it is what I hope someone will do for me. And because certain people in my life have done it for me.

One night Avery was playing her guitar and singing her heart out. Suddenly, I remembered an uplifting video I wanted to show her. As a self-professed “fan of adorable old people,” I knew Avery would enjoy seeing this video showing the impact of familiar songs on despondent seniors in a retirement home. The video was so touching and so personal, the newscaster lost his composure at the end of the segment.

After seeing the way the guitar-playing music therapist brought foot taping and hand clapping to the nearly lifeless seniors who began to sing along, Avery jumped up with excitement. “Music therapist? I never knew there was such a thing! I could do that, Mama! I want to do that!”

“There is very strong connection between music and memories,” I repeated from the news clip. “Just imagine. You could transport elderly people back to a beautiful time in their lives. You could help them remember their best memories and remind them of who they are.”

Soul changer

It suddenly occurred to me that we all have instruments in which we can change people’s souls. Some instruments are more obvious than others, but we all have them. Sadly, some people may never even know they’ve changed someone’s soul.

Soul changers

Thank goodness, they are all around us. Thank goodness, they are within us.

My friends, what an important role each of you play in this often-hurting world. You have the power and the instrument to help someone remember these critical truths: You are worthy. You hold value. You are not alone. 

Perhaps you do it with strong hugs or comfort food delivered right to their doors.
Perhaps you do it with a make-up brush and healing hands.
Perhaps you do it with long drives, quiet presence, or faithful prayers.
Maybe it is your green thumb or the tender way you wipe tears.
Maybe it’s the way you remember people’s names and say them with love.
Maybe it’s the way you bring humor to heavy situations or drop everything when needed.
Maybe it’s the way you always know when to pick up the phone or send a hand-written card.

Soul changers

Sometimes all we need to believe in ourselves is one person to remind us of what we already know.

And like a familiar tune from long ago, just a few notes is all we need to start tapping our toes and singing the lyrics we never forgot. And low and behold, we find it’s just the anthem we need to carry on.

That, my dear friends, is what I want to be. That is the essence of what I found myself longing for after hearing Rachel Scott's story, after watching The Mission for the first time and every time after when I listened to the soundtrack with my eyes closed. That's the quintessential Mark Maker that I want to be, the one people remember as the changer and caretaker of souls. Even just one.

I know that I truly loved my work with The Healing Journey, even though it brought up a lot of difficult things for me in the dark of night, and I know that I would have thrown my whole self into my massage therapy, had I been able to complete the training. I continually gravitate toward these professions of healing and helping, because that's who I am. That's what I wanna be. Now that my body is in a state of constant rebellion I can't accomplish the goals I once had for myself, but the delicious thing is that I can be a soul changer and a caretaker of hearts even from the depths of my own pain and from the cushions of my couch. It doesn't seem like such an unattainable goal after all, framed in this kind of concept. The very very best part? I know that I've already met this goal many times over, but each time will be beautiful all over again. Also, when you invest in the people around you, they tend to turn around and take care of you right back, which I've experienced much of. Now that I'm more dependent than ever, I have a lot of good people who have my back. Give and receive, ebb and flow.

Suddenly the next 28 years don't seem so much of a burden anymore.

Tomorrow is my birthday. Tuesday, that is. I know it's technically Monday right now where I'm at, but I've been awake for a few hours after another few hours sleeping, only a short nap, so it still feels like Sunday to me. Ah, who am I kidding? The days don't "feel" like anything to me anymore. I don't have a regular enough sleep/wake cycle for that. It's all one long day, punctuated by naps long or short.

On Tuesday I turn 28. I can't help but take stock, think about the passage of time and how much I may or may not have left. When I was in high school (during one of my several sophomore/junior years) I attended a prayer breakfast where the keynote speaker was the father of Rachel Joy Scott, the first student to die in the Columbine shootings. His story of Rachel's life touched me deeply, and it also lit a fire inside me that I've never really been able to explain. You see, she had this purpose and direction to her life that makes me ache for something similar, and even though she died quite young, she still left an indelible mark on the world around her with her kindness, her inclusiveness, and her determination to make the little universe she inhabited a better place. The best part is that she did. She knew somehow that she was going to die young, that year that she was shot. She wrote in her journal some time previous that "this is my last year on earth, I have learned what I can" or something to that effect. (I'm going off of a ten year old memory, so it's not exact.) And now that I'm facing the accomplishment of year number 28, it astonishes me because I always felt that I was going to die young, too. I never really expected to reach thirty. I suppose it's because I've spent so much of my life focused on immediate survival, which was the only way to make it through the trauma of the first decade and a half, but the dreams of the future always seemed unreal and hazy, not concrete at all.

When I look back, though, I am very happy with what I've accomplished, particularly knowing now that I was fighting against Ehlers-Danlos the whole time, and some of the other stuff like adrenal fatigue and food allergies as I got into my teens. I've had some grand adventures in my time. I feel particularly fond of my Idaho adventures. They were the ones most closely aligned with my most closely held daydreams of adult life. Have I ever mentioned that one of my most passionate wishes as a girl was to grow up and join an Amish community? The rustic, living off of the land "survival" lifestyle holds a deep, deep appeal for me, and living on the premises of Summer Hill Farm away up in the mountains was a dream come true in a lot of ways. I only wish that I could have stayed longer, or gone up there sooner. The timing worked out, though, to be for the best. I could not live up to the rigors of country life in my current state of disability, so it's best that I moved back to a soft city life before it got too bad! ;-)

I do feel a sorrow, though, for the life that I will not get to live. Chronic illness and intractable pain have changed my life irrevocably, and there is a deep sadness that comes with that certainty. Granted, I'm the most comfortable that I've been in years, now that I have the proper balance and dosage of pain medications, but the thought of years and years of this is… daunting. To say the least. I feel like I'm constantly dancing on the edge of a chasm, and if just one little thing goes wrong anywhere in the chain of events, I will topple over the edge and be broken on the jagged rocks below. If something happens to  the manufacturing or delivery of the pain medication, I'm doomed. If the pharmacy has troubles with stocking (like they have the past 6 months), I have nowhere to turn. I tried getting my meds filled at a different pharmacy, but they all turned me away because my needs were too great. If I can't get the hundreds of dollars necessary each month to buy the meds… I'm toast. So it's not just the thought of the huge drifts of pain that will accumulate through the years, but the stress of not knowing, each and every month, until I'm rolling out the pharmacy door with meds in hand, that seems the most unbearable. It's a really doomy, gloomy thought, so I try to not think about it much. Sorrow? Check. Stress? Double check. Moving on.

I read a really interesting sci-fi book a few days ago called "Factoring Humanity" by Robert J. Sawyer. I don't wanna give away spoilers, but one of the premises of the book is that humanity isn't a bunch of individuals on a spinning rock, totally unconnected from each other, neither is the information gathered over a lifetime lost when an individual dies. Rather, humanity is all connected to one another through what the book terms the "over mind", a collection of the consciousness and information of every human mind that has ever existed. The information isn't lost at death, but rather "uploaded" and saved, like backing up your computer data, and the book goes over the story of how the over mind is realized and explored by a few humans at first, using the information sent to Earth by intelligent life on Alpha Centauri over a period of ten years via radio signals. I know it's just a fictional book, but it really does give me a framework for understanding the world around me that really appeals to me and just makes a lot of sense in some ways. It's given me much to think about, in any event.

That brings me back to the idea of "making a mark" on the world around me, though. Discount the idea of the over mind and just focus in on the thought that when a person dies a shadow of them lives on in a way through the memories of the people they interacted with. I would really like to be able to say that my interactions with the people around me left them happy and better able to cope with the harsh realities of life, you know? Because life is hard. Really hard. Anyone who says differently is selling something. Hehehehe. (Princess Bride reference, in case you didn't catch that.) We all know at least one person who is definitely not a delight to be around, and who seems to just make everything a bit harder to bear; someone who sucks the energy and life from those around them and either doesn't know or doesn't care. I don't want to be that person. Even if I have excuses that seem valid, I do NOT want to be that person. My young life was ruled by a tyrant of that sort, and I know how miserable it can be under their thumb. I absolutely refuse to do that to anyone else if I can help it. I think I've done a pretty decent job of avoiding that pitfall, even with my new neediness that came with the nosedive of my health. Perhaps my "mark" is simply that I made some people happy some of the time, made their lives a bit easier, even? I mean, in a first world world, what else is there?

So I'm turning 28. My husband will be 30 next month. I remember the days when 30 seemed so old! My girlfriend is even older than my husband, if you can believe that. Age never really mattered much to me as much as personal maturity, although I do tend to have a thing for older men. Daddy issues, most likely. I'll own that. lol. So I guess that's it. Just some musings on my life and what I hope I'm doing with it. At this point I don't feel like there's much I can achieve anymore beyond interpersonal goals. I'm just too damn tired. Somehow, I have to make peace with my multitude of dreams and my achy, sleepy reality. I have been doing "better" the past couple months, though. I'm starting to feel like myself again, really and truly. An altered version, no doubt, but no one stays a static version of themselves forever anyway. I'd be altered no matter what.

I've started going for walks again, though, and I get out of the house twice a week regularly, once for grocery run with Corey and once for coffee date with Saka. I've even stopped throwing up all the time, thanks to a lovely med they give chemo patients! I have to take it consistently, though, or else the nausea sneaks up on me really fast and I find myself on the couch clutching my vomit bowl within a span of ten minutes from feeling fine. Gotta keep it in my system. I can't help but laugh sometimes at how different my every day life is from what I'd ever imagined it being!
No artsy cafes or guitar in the park, no challenging classes out at the college with a yoga session afterwards.
No five mile walks in the muggy warmth of a summer's night.
No swell of a pregnant belly.
No certificates of continuing education, no job, no paycheck.
No numbers in my savings account.
No trip to Europe, touring art and culture and food.

There are losses, to be sure. I gotta quit that or I'll start crying. But hey, everyone has losses, and everyone has gains, too. I know I'm better off than I was a year ago, and for that I'm very thankful. Here's to another year of, um… tea and Netflix! Yeah! And a circle of good people who love me very much. That's always a good one.

Yeah, I know, I've been quite absent of late. That's partially because I don't want to wind up saying the same things over and over again, which would probably happen, and partially because I just don't have the gumption for much besides waking up, moving to couch, occasionally getting up for pain meds or bathroom or whatever food I can handle that day, managing liquids, and returning to the horizontal position.

I've started doing this thing where I'm working with a coach to try to make money from home, working online, like a go-at-your-own-pace class type thing. Selling stuff on eBay, that's what I'm working on right now. It's hard, though, really hard, when the word "energy" is a dim memory of a time gone by, and nausea stalks the streets, seeking whom it may devour. Hint: it's me. I have to force myself to sit up and try to focus and learn, and many days it just doesn't happen.

I've basically spun down into a crumpled mass of "I can't fucking DO this anymore!" and I refuse to budge. Symptoms have flared up and recruited other symptoms that I hadn't become acquainted with yet. I started doing some more research on EDS this week, but I stopped after a day or two because it's too dismal of a prospect, knowing what I'm in for. It did help me to get some ideas as to what this chronic nausea and vomiting problem might be related to, though. I'm throwing up all the time, and when I'm not throwing up I'm either so nauseous that I can't stand up or sit up or my stomach is threatening to toss the cookies. Sometimes I have a day where I'm alright, but they're getting fewer and farther between.

Don't get me wrong, there are some good things happening too. It's not all crappy. My sister sent me a pastel rainbow colored alpaca stuffed animal for Christmas, whom I have named "AlpaCapone", and he goes almost everywhere with me. My cats are a delight, generally as a rule, and my husband continues to be the thing that keeps my heart going. I have a friend that has come to mean the world to me, and she's been a breath of fresh air, being there when I don't have the energy to reach out. I've stopped interacting on social media, for the most part, because I just don't have the energy to reach out, and I don't feel like I have much to share at the moment, at least nothing that people need.

~Alpacapone in his gangster hat~

Sorry this is brief. My brain is just not wanting to flip on the "eloquent" switch, plus I'm typing away as the husband tries to sleep next to me, so I figure I should wrap things up. It's not that I want to be a downer or have a huge pity party, it's just that this is where I am right now. I found this website called themighty.com and I'm excited about it. There's a particular story I read on there the other day that was just what I needed--just read the comments where I say so!--and it helped to pull me out of my huge depressive funk by realizing that it's okay to fall down and fall apart sometimes. I'm really discouraged with the fact that I have a rare, incurable, systemic, degenerative set of diseases that makes my every waking moment a misery and will only continue to worsen as time passes. I don't know what to do with the enormity of that fact, and I don't know how I feel about it except for "angry". I'm trying to figure that out, trying to learn how to live with this. Anyway, here is the story I read that helped give me some peace: "To the Person With Chronic Illness Who Feels Like You’re Falling Behind". Fyi, the girl who wrote this also has Ehlers-Danlos Syndrome, so I know she gets it. So, yeah. That's it for me for now. I need to take some pain medication and try to sleep so I can maybe accomplish something tomorrow. I'll be back soon to vent, I promise. I need it. The words are starting to choke me from the inside.

Well hello again, world. I apologize for the silence, but it's hard to blog when a.) you don't have much to talk about because your routine is… lacking, and b.) when what energy, mental or otherwise, is appropriated to tasks and hobbies more likely to bring an immediate benefit, like sweeping the kitchen floor so I don't have to step on little pieces of cat litter. (I walk around barefoot most of the time, and secondary to water on the floor when I'm walking in socks, litter/gravel on the floor is a huge pet peeve of mine.)

Anyway, I've just been trucking along, making the best of things. I've been more social the past two or three months, attending "events" or going to friends houses. I've managed to get the right pain meds the past couple of months, and in the right quantities, so that's been a huge relief. I still get super anxious and stressed the closer the month rolls to my pain appointment, but that's something I can't help. It's not even a conscious thing, like a mulling over of all the bad things that could happen the way we do sometimes, more like a subtle buildup of pressure that makes everything seem a little more hopeless and overwhelming than it would otherwise. But when I'm aware of it it's easier to look at things as objectively as I can. I'm just getting so worn out. This battle of pain and nausea and throwing up when I drink more than a few sips of liquid at a time (that one comes and goes, but I'm never sure when it'll show up until I start heaving), the muscle cramps and spasms, the unaccustomed weakness in my limbs, sheer exhaustion, all kinds of other "fun" things… it's taking me down. I just wish I could have a break, you know? But then I'd probably be even more devastated when the break was over and it all came rushing back. Things are tough, I'm not gonna lie. But I'm handling them to the best of my ability. Is there anything more any of us can do in our lives?

I was denied disability last week, maybe a week and a half ago. I don't remember the exact date. It's not the kind of denial I can appeal, either, since it's not a decision of "you're not sick enough to warrant our help" but one of "you don't have enough work credits to qualify for one program, and your household makes too much money for you to qualify for the need-based program, how dare you try to exploit us your greedy wench". It was a hard blow, to be sure. Corey and I were counting on someday breaking out the other side of the maze of red tape and appeals and paperwork and getting some actual monetary help that we could depend on. As things are, it is only the donations of friends and family that are keeping us going by paying for my medical bills. I'm working on a few other legal ways to reduce costs of scripts and a few other things, but it is the same story of a process that takes months and months and years to get handled, so until then I'm still paying $600/month for all of my medications combined. That's just not a sustainable amount, not when you've got two people and 3 cats living on one paycheck. But it has to be sustainable, or else this little lady ends up in the hospital indefinitely, which is an astronomically more expensive possibility.

I am needing to go to the store to pick up some groceries and such, but I'll try to get back here and finish tonight or tomorrow. I'll be spending Thanksgiving with my Grandparents, so maybe I'll jump back on and write a bit more then as well.  All told, I'm pretty happy these days. (Oh. Looks like Corey is making some food, so… I guess we're waiting for a bit?)

So financially, we're panicking a bit, but I'm sure that something will come up if I just put more work into it. It took SO MUCH of my time, this disability bullshit, and I spent so much of my valuable energy and spoons on the research and filling out forms and phone calls and finding a lawyer and… all the homework. And now I have to do more homework because of that stupid ruling. I'm incredibly frustrated about that. Make the healthy people do that kind of thing. They have energy and to spare. All of my spoons are precious, and I don't want to waste them on the government's red tape. I'm having a difficult time conveying the deep rage and contempt I have for the system that has screwed with me for so long. This whole experience was infuriating to the deepest depths of my atomic structure. I was hoping that eventually I'd be done with it and be able to move forward with other challenges. Because it's never easy when you're sick and in pain and disabled. No, everything is constructed to be as difficult as possible, because why should anyone make things easier for someone who is already fighting battles that the average person cannot comprehend, every second of every long, exhausting, interminably awful day. No, no, let's make things harder, so they can prove that they really want it. Pfft.

Gah. And here I was, going to try to be all optimistic and paint a pretty picture about how well things are going and how well I'm handling everything and how nothing is really a big deal… but to be completely honest, I'm infinitesimally close to being DONE. So done. I'm exhausted. Down to the dim reaches of the cells that comprise me, I am exhausted. Just waking up and facing the day is an ordeal. Not only am I physically burdened (seemingly more and more and worse and worse as time goes on) but my mind is constantly spinning with "how am I going to do this?" or "I need to do ____ and _____ and ____ and ____, so if I do ____ will I still have some juice left in me to at least attempt ____?" I'd rather not do either. I'd rather pull the blankets over my head and ignore the world until it's time for my next med dose. I can't ignore the world when it's time to take my meds, it hurts too much.

I'm stressed. I'm exhausted. I'm sick. I'm failing at the goals I've set for myself, and I feel like nothing more than a human vegetable most days. Being more social, spending more time with people, has been nice, though. I've enjoyed that. I began to really miss people this year, 'cause it's hard when you can't go to your friends but they have to come to you. It's inconvenient, and no matter how well meaning folks are eventually it just becomes too much of a hassle. They're too busy with work, family, church, hobbies, their own illnesses… just life. And I get that. It doesn't keep the days from blurring into one another with the sameness of it all--get up, meds, try to eat something, try to drink something, maybe read for a little/watch a movie or show, meds, try to eat/drink something, sleep, meds, sleep, cats, try to eat/drink, sleep, Corey gets home, show, sleep--or keep the nip of loneliness at bay. So it's been nice to hang out with friends and laugh again.

A more recent friend of mine, CO, took me with him to the Dungeons and Dragons game group that he joined a week or two ago, and it turns out that I already knew most of the few people there! It was a pleasant, funny surprise :) My old friends weren't expecting to see me, of course (of all things, right?), but it was nice for them too. I am going to continue going, and maybe even join in and play myself. I played for a little while with Michael but I'm no expert, not by any means. It would be nice to play a game where Corey isn't also a player, though. I tend to rely on him overmuch, because I'm still so clueless, but I want to do it on my own, take my character in my own direction, learn the game myself, you know? Then I can come back and play with him and stand on my own two feet as a player with her own distinctive style and knowledge.

Anyway, that's neither here nor there. I'm trying, I really am, but it's hard when your world is made up of one uncomfortable, painful thing after another. I'm trying to keep my eyes on the light, but lately it's just been disorienting as hell.

Warning: this will be a rant. It will contain negative things, even though good things happen and work out in my life too, because that's what I need to clackity-clack right out of my head and lightly boiling veins right now.

So.

I just spent the day in the company of a woman who reminded me at least once an hour of the many mistakes that I made yesterday while operating under crazy stress, tons of pain and flaring, and 3 hours of sleep in 2 days. And she just couldn't let it rest and how upset it made her and all that jazz. I got REALLY sick of hearing my faults reiterated, especially when I'm already stressed and overwhelmed to the max and barely operating in "human" mode through the stress, crazy severe depression, and fun fun symptoms. So of course I overdid it carrying my own stuff and such, because I was already "below" her and I couldn't let her feel anymore, well, entitled because I really couldn't bear it.

She's not a bad or evil person. We had some good times, laughed a lot through the convos. But no matter how much I explained my intentions within the mistakes that I didn't know I was making and apologized with full owning of my own responsibility, she just could. not. stop. bringing it up. For instance, when I explained that I was late to pick her up this morning with Grampa (yes, and never texted ahead to tell her), I explained that it was because I was throwing up when Grampa got there and had to kinda stop first, and also I have only been out of the house lately at 2 a.m. so I forgot to factor in work/school morning traffic. Her reply was to ask why I didn't text her while I was vomiting? Yeah. Sigh. But, hey, we did have some fun here and there, cause she's a decent person and funny, so it wasn't a misery every second, but I felt very trapped and under a microscope. I know she's in a stressed condition herself, so I'm seriously hoping that all of…that… is just another misunderstanding brought on by stress and the awkwardness of not really knowing one another. The ways that we interpret things seem to be at complete odds to each other. It was just… I dunno. It was just a lot of conversation that made me feel like a shitbag for being, well, me. Like everything that is just intrinsically me and me living life is a pet peeve of hers to some degree or another.

I am overly sensitive right now, I know, but I really don't want to spend time with her in the future under my own volition. I don't want her in my home because it's my sanctuary, the one place where I can fuck up but cuddle my kitties and know that I'm still a person that other people like, or to just fall apart and slowly put myself back together bit by bit. If that gets tainted because she misunderstands something I say and starts giving me shit or gets mad or something, I feel like I'll be losing something important. However, her husband is the one that I have been building a friendship with, not her, though I'm not even sure how or if I'll be able to handle him for a while, and he and Corey have already bonded as nerd bros, playing Magic and talking about DnD campaigns and running Diablo dungeons together, etc, and I absolutely do not want to ruin a budding friendship of Corey's. Too many of his friends have moved away, and our social circle has become practically nonexistent. It is the tatters of the tatters of the original, and it is sad because he works such odd hours that he can't just go out and go to… something… and he doesn't like sports, and other stuff. He prefers his friends be close to his level of intelligence, so that cuts out a huge portion of the population right there, lol. Anyway, yes, the guys are building a friendship, and the guy and I are building a friendship, but I don't know how much I am expected to like or interact with the wife in the future of said friendship. However, they have a style of communication that seems to be similar to what Corey and I have, so they share anecdotes of the conversations they had throughout the day, including texts and such, so it's not like I can even tell him any of this without having the whole thing blow up in my face like it did this time and who knows what the hell will happen then. Only the next time I'd be expecting the explosion, so I might be able to duck. I'm tired just thinking about it. I couldn't wait to get home. So much for the claim of hating drama, cause this shit has been pretty dramatic in some ways.

I'll give you a tip for life and interacting with people: if somebody fucks up, even if it seems like a major deal to you, accept their goddamn apology like a decent human being. If they are sincere, that is. And I was. And… yeah. Never heard an acceptance of that apology, assurance that we were cool… just an endless recounting of her offended sensibilities. I went back and read my texts and hers and I can see her side of things now that I know what to look for, but I can also see that I didn't mean any of what she interpreted, so… it was basically a horrible day, because she was my ride to LA and back for the pain doc appointment. That went okay, not an abysmal tragedy like last month where I was running from pharmacy to pharmacy to find one that had the stock to fill my prescriptions because the DEA/wholesalers are mucking up the system thanks to the "war on drugs" that's ruining my ability to have a semblance of a functioning life.

//break for rant regarding current difficulties with "the system"//

I am very lucky I didn't end up in the hospital this month, being forced to quit a serious and strong dosage of a formidable type of pain medication cold turkey, as I couldn't find a pharmacy that had the ability (or willingness, *ahem*) to fill even part of my script. Do you know how freaking dangerous that is? And with the Intractable Pain that could already severely damage body systems when let run unchecked as "the system" is forcing me to let it remain unchecked? What happened last month could literally have killed me, or turned me into a total cripple. It's terrifying, having cold impersonal forces playing with your life and livelihood and having such a limited ability to impact the outcome or the process itself. Fucking terrifying. Especially when you're talking not only livelihood, as in the ability to dress yourself and shovel food and liquid into your mouth and deal with the digested products, or even the ability to sleep in a normal manner, but when you are talking about your literal life. And mine is not even 3 decades old. If something terrible happens to me now, I will have to deal with that for, well, the rest of it, and I really, really have enough to deal with already.

//end rant//

Today's experience remanded me that I've been feeling very strongly lately like people just don't understand what kind of pain I'm in or that it's bad enough to make me really sick, like, all the time, and it's really easy to brush off exactly how hard every little thing is for me.  That could probably be because I am smiling and laughing and chatting with the person, walking around as much as I can handle at the time, etc, because I hate being a burden and being beholden to people, and I really want to keep as much independence and dignity as I can. But life is hard for me and getting harder by the month, so let me rectify that bit of ignorance with a brief explanation that may lend itself to a better understanding. It's difficult to truly comprehend unless you have experienced it, though a good effort might get you close, intellectually.

So. Imagine that you've gotten into an accident of some kind, perhaps a vehicle on vehicle crash or being hit by a truck while you were moving in front of it as a walking pedestrian or a bicyclist or maybe on a motorcycle. You get hit by this other vehicle and you are slammed around all over the place cause you flip over at least once and make sure that all sides of you are evenly "tenderized", hehe, before you come to a crushing halt due to reacquainting yourself with the Lady Gravity, who is a cruel mistress when shunned even briefly. Immediately, you begin to feel the effects of this reaquaintaince, especially if your imagined accident included you being actively run over by the vehicle that hit you, which would be a nice and accurate touch. As you groggily try to sit up, you notice and begin to catalogue the various pains and injuries you've just acquired, though not through any fault of your own. It was totally out of the blue and not your fault, but you're sprawled on the ground regardless, so you try to be productive and figure out what still works while you wait for the ambulance.

Skip forward to, oh, say, the hospital. You have realized the extent of your injuries, and the full understanding of what life is going to be like until you heal up is beginning to wash over you in confused, concussed waves. You can't quite think straight, and you're getting words a little mixed up, dropping some completely, and using Spoonerisms for the first time. Your head aches with every throb of your pulse, any noise or vibration that comes from your pipes, every slight toss of the head. In fact, even scratching your eyebrow leaves you wincing and exhausted, but you've just noticed something else: everything hurts. It isn't a collection of various pains that kind of wait in the background until attention is turned to them to speak up, no no. Nothing so shy and considerate. These are all large, strident pains made of many different flavors and modes of operation. The pulled and strained and bruised muscles are a fierce, tight ache that clenches in on itself  the longer it continues, underscored by a constant, full body throbbing ache. You feel like a giant bruise, and when you move the injured muscles they seem to complain with the stiffness already settling into the joints and tendons, sending sharp, unpleasant stabs of pain through the abused tissues.

You find that all of your bones are broken. All of the major bones that hold you up and keep stuff in are cracked like so many sturdy twigs. No bones sticking out anywhere, but definitely all at least cracked enough to compromise their integrity. Not only are your muscles constantly complaining at you, but now your skeleton cannot and will not hold you up as it was intended to do as its integrity has been compromised. Your muscles have to kick in overtime and extra strength to make up the lack, but that only causes them to tire faster and begin to cramp and rebel that much sooner, and they were already bruised and throbbing and not happy before the added work. Since all of your major bones are broken, you will now have to rethink every single aspect of your daily routine. Your hands and fingers hurt too much and are too weak to support your pen to sign your name, or grasp your toothbrush, and there is no way that you can shower with any regularity or without some kind of assistance. Using the remote to navigate through Netflix is okay for one or two clicks, but just holding the remote in the air can only be done for a couple of seconds, if you can manage it.

Your legs just don't hold you up so well right now, what's more they hurt like crazy all the time, from the inside of the bone itself all the way out to the skin, and you need help getting up, getting down into chairs, standing if there is no wheelchair/walker nearby, getting in and out of vehicles, getting into and out of bed, putting on pants (because legs and hands are broken, so of limited use), and putting on shoes is so far beyond you that it's not even funny. You can't wear a bra of any kind because of your poor tortured ribs, and in fact you can't wear most or any of the clothes that are typical of your wardrobe because they bind in places too much and cause untold agony with their rough fabrics and their awkward fasteners and cutting into tender skin and the sheer volume of energy it would take to don and doff those duds.

You also can't sit or lie in certain positions or for very long, and you have pillows everywhere to cushion your delicate, pained self. There's not much to do because you're limited to lying or reclining, because when you get up from the prone position everything goes black briefly and a very loud rushing, roaring sounds fills your ears and drowns out everything else for the next minute and a half, at least, though it gradually fades. You could watch a movie, or maybe read a book, but good luck paying much attention to it, the way you feel and the nausea that's sloshing around in your mostly empty belly. You can't stand up to cook, either, so it's whatever you can throw together in the time that you're upright-- if you haven't passed out on the floor or something by then--before you somehow drag your poor carcass back to whatever piece of furniture you've claimed as your kingdom and throne. (Shoot, it could be the actual "throne", whatever works for you.) You're not really hungry, though you probably should eat so you can take your meds on time in a bit, but your pain levels are rising rapidly and you can feel them going through the figurative roof. You use the bit of pain management that you've been taught and it seems to work okay for a microt or three, but then the pain distracts you again before you make much headway. You really, really, really need another dose, but it's not time yet and you don't want to be accused of being a druggie, or addicted, or run out early and be flagged as addicted and not be able to access the medication you need in the future, so you wait. You wait till the proper time and write it down where you're keeping track so you don't mess up the schedule that will make your meds last until the next fill.

Now, though, the pain is raging and it is way too intense to be stopped by that silly medication, so you suffer in this horrible cycle of "I have to wait, but I'd like to take another pill NOW" and "While I was waiting my pain went up 3 scale points, and I need to go to the emergency room now because I can't handle this here at home", but the ER doesn't want to see you either, so you… cope? Somehow. Urgent Care, perhaps? While you are weighing your options through your frustrated, angry tears you realize that you're pouring sweat while shivering lightly, and you realize that you have yet another fever for no real reason. Shaking your head very, very carefully and very minimally, you turn and crawl home (figuratively) to lick your wounds in the privacy of the walls you call home.

--------------------------

All that I wrote about the experience of doing life after the injuries is "a day in the life" of a young woman with very, very severe Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome, among several other goodies. Well, I can use my hands better than I wrote about for now, so I can brush my own hair, put my clothes on most of the time, brush my teeth, use a pen, type (obviously), but shoes are still very difficult for me. It hurts too much. Muscles, bones, joints, skin… all of it.

So there, people without severe pain diseases. THIS is what I'm experiencing when you come over to watch a movie, when you are giving me a ride to the doctor or the store, when I'm surfing Facebook and participating in a Poke War, when I volunteer to help you do anything… always. It feels like this *always* for me, and that's just my "new normal". I hate it, and I miss being more independent, and I feel like I'm about to lose my freaking mind sometimes when I'm flaring for whatever reason and my personal pain scale has to stretch to accommodate new numbers, or when yet another medical bill appears in the mailbox. I hate the fact that it never, ever goes away or lowers to an ignorable level. It's always there, always distracting me, always chewing at my brain and body, but it does carry with it a measure of pride, feeling like a Spartan among commoners for the commitment it takes to still be civil to people when you feel so shitty, to still TRY when every day is the same, a variation on a theme, and you pretty much know how it'll turn out but you fuckin' try anyway because you can't quit. It's kind of not an option when you're trying to life.

So with that in mind, I'll just try to be civil to the lady who hurt me so badly today, and see what comes of it. I'm too tired from trying to life to do anything else. I have been operating at max capacity for stress and obligations for weeks now. Priorities. And she just… isn't one. I'm not sure about the husband right now, either. They are a team, and I don't want to break the set if I don't have to, in terms of friendship. Does that make any sense? It's going to have to, because I'm going to bed now, cause UGH. What a long day. I feel better after vomiting my angry words into cyberspace, though. Blogging has always been such a good processing tool for me.

If you want to learn more about Intractable Pain, here's a good, brief little primer, and here is a quote from it:

"Based on our clinical observations, within the chronic pain population, a subgroup has an intractable pain syndrome or disease. All have incurable, extremely painful conditions, as evidenced by failure of various interventions to control their pain, including surgery, nerve blocks, physical rehabilitation, and weak opioids. Patients describe their pain as constant, debilitating, and potent enough to interfere with sleep and sexual function. Many report suicidal thoughts for the sole purpose of stopping the pain, incessant crying spells, fatigue, depression, social isolation, restriction of mobility, and numerous bed- or couch-bound days."