rSlash Flashbacks

So I have been watching a LOT of this particular YouTube channel that I’ve fallen in love with called “rSlash”. In each video, he reads several stories posted in particular subreddits, and I like to listen to it while doing other things. The storirs are always hugely entertaining, and because the bulk of his content is Entitled Parents, Choosing Beggars, Pro/Nuclear/Petty Revenge, I generally feel much better about myself as a person after listening to horror tales of awful human beings. 😆

Today, one of the videos had a story of an abuse survivor getting revenge on their abuser by getting them convicted and b jailed, and I wrote a quite lengthy comment under the video that I thought would also make a good blog post, so here it is! I’ll link the video first, and the story in question is the last story in the video.

OP’s experience upon confessing the abuse of Hank is almost exactly like mine, when I finally confessed. Was sitting on the porch with my mom and some little voice inside me told me that I needed to tell her, and NOW. We found out this year that my step-dad who abused and molested me had moved on to molesting his own flesh and blood, my youngest siblings, whenever he had custody of them. I thought that I had protected them by taking the brunt of it as the eldest, but abusers NEVER STOP AT JUST ONE.

When I finally disclosed, my mom went into full on enraged momma bear mode, and the next day I was at a facility that provided services to abused kids, just like OP. I had to tell perfect strangers the awful, shameful, horrifying intimate details of what he’d done, the very day after I broke a 9 year silence about it. And it was a MALE officer. Finally, they let me write out what happened, and I still have the statement.

Long story short, he was charged and the cops were waiting to arrest him when he showed up to pick up the youngest kids for his weekend of custody. My future step-dad/Mom’s boyfriend was there to let the cops in, and he took video of the arrest. You can hear him chuckling in the background as they cuff my abuser, lol. Future Dad was NOT a fan of that asshole. The proceedings to get to trial dragged out for over two years, but I FINALLY testified on the stand, in front of a jury of strangers, having to recount all the grisly details in front of these strangers, my abuser and his whole family (who had shunned me and mine since I came forward, and that HURT since they had been family for decades), and MY whole family. I had to use a doll to show actions and specific body parts, because I was so humiliated and embarrassed that I was using vague language when my lawyer needed specifics.

I don’t remember much about the trial, because it was so stressful. It lasted two, maybe 3 days…and I WON! Put him away on several counts of sexual molestation on a minor, though unfortunately he was able to serve those two terms concurrently. He got 17 years, I believe, so he’ll be getting out in 5 years or so from this posting. After that experience, however, I worked with my Victim Service Advocate, whom I’d befriended during those 2 years of him trying to duck the inevitable, and helped her start and run a local non-profit organization that provides services for abuse survivors of all ages and genders. I ran the tween/teen sexual abuse support group and acted as administrative assistant until I was too sick to work anymore, but the organization is still going strong, and has connected with other community organizations to create a much stronger web of services for survivors to access when all the legal stuff is over and they’re looking at trying to rebuild themselves and their lives.

During all of that, I learned that not only are abusers usually someone you already know (family, relative, friend, neighbor, church congregation member, etc.), but that the conviction rate for sexual abusers is vanishingly small, as of 5,6 years ago. It was good for my girls to see someone who had had success in getting justice, that it DOES happen, but none of them ever got convictions against their abusers. Why is this? Firstly, the percentage of ppl that come forward after they’ve been abused is pretty low, because during the grooming process and then during the abuse itself there are usually threats made to keep the victim from telling anyone. In OP’s case, it was “I’ll kill you”, in others it’s “your mother will hate you”, “no one will believe you over me”, “I’ll hurt your family/pet”, etc. So, lots of people never say anything. After that, getting a charge to stick and getting an arrest is often difficult, due to a lack of evidence, turning into a he-said-she-said. The trial, if you manage to get charges on them, usually ends up the same without concrete evidence, and many times in the case of kids and minors the not abusive parent will choose the abuser over the child, because of the intimate relationship or friendship already in place. Due to all of these hurdles, getting a molester or abuser to actually be punished for their crimes…is a very depressing statistic. Hopefully it gets better in the coming years, though, as current and emerging technology makes it much easier to gather proof that it used to be, and as awareness is raised and policies change over time.

Asses and Angels

Sometimes it just hits me how fortunate I truly am, despite all the hardships and struggles. True, I’ve got a broken body and can’t keep my house clean and tidy like I’d wish, and neither can I contribute to our financial health. I’m not living below the poverty line, though, and I’ve got a husband and family who understand the limitations and don’t give me grief for it.

It might seem rather sudden, going from “I’m super sick and life sucks” to “Wow, I have it pretty good”, but I’ve been reading through this book I picked up the other day called Asses and Angels, by Gail L. Black. It’s an autobiography, recounting her numerous experiences with abusive asses and the angels who came to her rescue and support throughout the way. It makes me think back to my own abusive upbringing, and the work I did with The Healing Journey– getting it off the ground, running the support group for the tween and teen girls who had also been abused and molested. I find it absolutely remarkable that I stumbled onto a healthy relationship that has lasted so long, given how often abused people go on to repeat the cycle in their own relationship choices.

Funny story, actually… You see, Robot and I started dating when I was 16, got engaged at 19, and then I broke it off and moved away for 5 years. We got back together in 2012, married in 2013, and will shortly be celebrating 7 years of marriage. Back as teens, though, my family liked Robot well enough, but my mom and grandparents had very, very high hopes for me and were concerned that his steady, not-super-ambitious nature was going to, as they put it, “drag you down”. Keep me back from the greatness they fully expected me to achieve. It’s not that he’s a lazy good for nothing, he’s just… a simple guy. He really wanted to go to Embry-Riddle to study aeronautical engineering and work for Lockheed-Martin eventually, but he wasn’t willing to go into $20k worth of debt to do it, so he’s stayed here, getting a job with the Sheriff’s Department and just living a good, solid life.

So, yes, they thought that he would drag me down into mediocrity, mundanity. However, when I moved back home after years of being horribly ill and my health just continued to decline… somewhere in there, the tune began to change, because he stuck by me. He’s weathered the ups and downs of emerging, worsening, undiagnosed chronic illnesses right along side of me, and has continued to care for and support me in his own, rather tactless, way. So now the refrain goes, “He’s such a good guy, he’s been so good to you, you really got lucky with that one!” Funny how that happens. I’m just happy that they finally see in him what I saw all along– loyalty, integrity, stubborn as a mule…and, yeah, a little lazy. Works out well for me, though, because he doesn’t care if the house isn’t spotlessly clean! 😁

I reflect on all the horrible human beings who have come and gone through my personal sphere of influence, and I know them for the Asses they are. But really, when I take a step back from the stress and pain and residual emotional problems that are the fretwork of a great deal of my life, I see that I have many, many Angels too. I just hope, really sincerely, that I can be an Angel to the people I interact with, even if it’s just a passing incident. Kind of a “pay it forward” thing. It’s not like it costs me anything to be polite and kind, right?

Implications of mortality

Sitting here, dim light filtering past the edges of blackout curtains, staring at the face of my sleeping husband. Listening to the rising, falling breath of the humans, the cats…the snake. All of us, huddled in this darkened room together, taking comfort in one another’s presence as we rest.

What is he going to do without me? I’m trying to draw the silence, the peace, down into my very pores, to imprint myself with the essence of the life we’ve built together. All the familiar trinkets and smells, the blankets on the bed and the way we just know where each cat will be sacked out… the way he comes to the bedside to kiss me hello and goodbye, every single day… So many little things that build up a life. Our life. Will he be able to build again, without me? People do it all the time, I know, but… he’s always needed a little help to do more than sink into bare routine.

I’ve been sick. Very, very sick. Almost 2 years now since the last hospitalization, the pancreatitis. Took me about a year to get back on my feet again from that one. And here we are again, sick as a dog, and the effects of it will be lingering long after the crisis itself has passed. Each time it gets more difficult to regain equilibrium, and this time I was already so burnt out and beat down. Don’t know if I’ll be able to “bounce back”; I doubt it. Another turn or two like this and I’ll be done. You can’t really quantify something like that with proof, though. I just… know.

So here I sit, in a darkened room, watching my husband sleep… and hoping beyond hope that there will be someone else to step up and walk with him to the places I cannot go.

It’s really not fair. For either of us. But I guess that’s what you get when you marry a spoonie. And everyone dies, eventually… :-\

When the big things are impossible

I’m burnt out, y’all. I’m so tired of the effort that I have to put in just to keep my damnable body limping along, both literally and figuratively.

There are medications- 13 of them- to maintain various functions or to make up for some lack, and countless supplements to juggle and keep refilled and take properly. There are braces and compression gloves and socks and the need for regular massage and chiropractor visits that I can’t afford to make happen because I can’t work! There’s tides of symptoms, ebbing and flowing, but always, always there, and then there’s the coping methods needed to keep me from just folding under the combined weight of that tide. There’s the fact that my teeth are literally crumbling from the roots out despite a healthy mouth environment and good oral hygiene and I can’t afford to see a dentist or get replacements for the ones we’ve had to just pull. And due to that, I’m starting to become afraid of smiling because my teeth are becoming ugly to look at, and that just absolutely breaks my heart because my body smile has always been everyone’s favorite thing about me.

There’s a planner full of visits to seven different specialists that I must see on a regular basis, all of them hours away from me, and the calls and texts and begging for rides from people who I’m sure are just as weary of the trips as I am but I don’t have anyone else to ask. There’s the blood tests and the scans and “oscopies” and the phone calls and the paperwork to be ferried between them all, and then, of course, there are the bills for it all. The ones that get further and further Past Due because I have nothing to give them but yet I couldn’t just do without their services.

And then there’s the home that needs tending. The regular chores that healthy people never think twice about but that don’t get done hardly ever because we’re both too tired- him from working a rough, stressful job and me from just trying to stay alive. The cats that I absolutely love dearly but need feeding and litter box cleaning, and vaccinations that I can barely pay for.

It’s just a LOT. And it never stops.

I was doing well for a while after recovering from the main part of the pancreatitis (still dealing with some related issues). I was eating healthy and balanced, was exercising regularly, was balancing the load pretty well. I even got to see my family again, my Mom and siblings, which healed up a raw spot in my heart that I hadn’t realized was hurting so badly. I got to spend the better part of a week with my Grampa, traveling around to the little towns in the Iowa countryside that he grew up in and kicked around in as he grew into his teens. Now that was a really special experience, one that I cherish deeply.

But then winter came, and with it the dramatic shifts of barometric pressure that incapacitate me so badly. And with my already limited energy reduced to but a fraction, I am struggling to keep my balance. I’m so tired. Just… weary. Frayed. In my current state, “big things” has come to mean “anything beyond dragging myself out of bed to take my meds and make sure the cats and I get fed”. I am upset that the things that I have managed before are now so far out of my reach. It feels like defeat. It feels like loss of purpose, in a way. It feels like I’m just taking up space, sucking up resources.

Tonight, though, as I got into to tub to soak my aching joints and to, hopefully, wash my hair as well, I had to wipe off the ledges of the tub before I settled in. They’d accumulated a bit of dust and stray cat hair, which is normal in our home, but it felt good to make even a small dent in my surroundings. To change something for the better, however small.

Another ten minutes passed. Agnes made tea and brought over a tin of cookies. ‘So, my girl. Why are you fixing this? If it’s sat in the attic for six years, why fix it now?’

Good question. Dara tied off the thread, and started a new strand. ‘You know what my mom used to tell me? She used to say if everything in your life looks like a mess, start with something small. Clean that up. Get control of that. Then do something else small. Then something else. By that point, the big mess will start to look smaller. More manageable. Fix what you can fix, first.’

The Spirit of Victory, chapter 102

Abusive Body

I’ve come to the conclusion that living with a chronic, serious health problem (or problems, as it were) is comparable to being in a relationship with an abusive partner. The beginning is a dizzying whirlwind of emotions as you try to get your footing and learn the unique quirks and twerks of your partner. You want to talk about this new relationship all the time to whomever will listen, and you invest massive amounts of time into research/quality time, trying to find that blissful equilibrium. As time goes on, you settle into a comfortable pattern, and you think that you’ve got things pretty well figured out. Your body has other plans, however.

An incident occurs, and the other’s reaction is unexpected. Out of proportion. It must be my fault, you think. Obviously I didn’t handle that right. You try harder to predict reactions, to placate your short-tempered partner however you can. You give up some of your hobbies, your friends, and your focus narrows a bit. After all, it’s worth it to keep the peace, isn’t it? And for a while, it’s enough. You think that you’ve dodged the bullet, that things will continue smoothly from here so long as you maintain the current guidelines. And maybe they do. Maybe you get a month, a half-year, a whole year! You’ve decided that despite the rocky start, it was obviously just a phase, a reaction to stress or something.

Or maybe it’s not enough. Maybe, for reasons completely inexplicable to any kind of sound logic, the abuse continues. Grows worse. It must be me, you think. Clearly I’m doing something wrong, or there’s a particular thing that I’m not doing that I should be. My neglect is causing this. If you dare to reach out for help, that message is echoed right back to you.

“It’s because you weren’t vegetarian growing up. It’s because you use cosmetics. You’ve got toxins built up that you need to purge. You’re not taking this supplement/doing this treatment/seeing this guru. You take traditional medications, you’ve been tricked by Big Pharma and it’s all just encouraging the problems, even if you’ve seen positive changes.”

You give up more and more and more because the abuser has an iron grip on your body, on your life. I know, because I live it. I have had to give up a lot, because I simply can’t do the thing anymore, and it hurts. Oh god does it ever hurt. I miss the old me, the life I led that was largely determined by my own self, tempered by consideration for the ones I love. And now, well, now my life is focused largely on myself, simply because it takes so much effort to keep up with the necessary things required by basic living, and it seems that those things increase threefold when you get a chronic illness or five. Doctor’s appointments, prescriptions, organizing rides and bills. Doing the myriad little things that help keep the symptom-beasts at bay, and doing them in a timely manner. All that and more, so that I can stay here, stay with the people I love and who love me in return. They have all expressed vehemently that I am not to willingly leave them. It’s hard, but they’re worth it.

So despite my abusive body and all the concessions to it that I’ve had to make, I do want to make one thing clear: my body and my lifestyle may be held captive, but my mind is not. My mind is my own, and THAT is the critical difference between a victim living in fear of their abuser and my living with the burden of a broken body. My mind is not broken, nor is it subservient. Weary? Definitely. Foggy as hell? Most assuredly! Free? Unequivocally.

“My mind is my own, and THAT is the critical difference between a victim living in fear of their abuser and my living with the burden of a broken body.”

The Dreaded Road Trip

I’m so burnt out on trying to find people to drive me to my pain specialist appointment every month. It’s 3.5 hours away, in a different state, no less, and it’s really a very draining way to spend the day. I don’t blame them (“them” being various friends, relatives, and acquaintances that have refused to take me), not one bit. If I could get out of going, I sure as hell would! But the meds I take are only accessible by traveling through a maze of regulations, and one of those rules is that I have to have a brand new prescription for them every month. No refills. No phoning it in. I have to personally see the doctor, obtain a hand written prescription, travel to the pharmacy and personally hand them this prescription for it to be accepted. Every. Thirty. Days. Oh, and if they are out of stock? I’m screwed, because I can’t fill the script in a different state (you know, where I live), and they’re not allowed to mail the meds to me.

(Image source, edited by me.)

The few people that do say “yes” to the trip regularly, well… I think they’re about as burnt out on the trip as I am. No, probably more so, because at least I can sleep during the drive! It’s nothing but work for them, and I hate that I have to saddle people I like with such a crap experience on the reg, but I just can’t drive that far myself. Haven’t been able to in years. With the seizures and the dysautonomia and the narcolepsy and the pain, it’s just not a safe thing for me to do, though I can do running around town on my own some days. I’m nervous the whole time, though, and always pretty much desperate to get home.

The ideal solution would be to find a pain specialist nearer to me, but I’ve gone through all of the local offices and some in a different but still distant city, but I ended up in the hospital after mistreatment, sooooo… I’ve tried so many different things to try to lessen my need for this far-distant doctor, but nothing has done the trick so far.

And so here I am. The number that people probably cringe at when it comes up on their phones, because they know what I’m gonna ask. I feel vaguely like I’m using my friends and family, and I absolutely hate that feeling. I just don’t have any other solutions at the moment. And I also have no ride.

Switching pain management routes

I decided a while back that because it is so hard to get the pain medication I need these days and with the 14 hour trips to get to and from the doctor that would treat me, I was going to try the route a pain friend of mine has found effective and try buprenorphine therapy. You can look it up yourself, I honestly don’t have the energy, but it requires going into withdrawals from the regular opiate pain meds, which I did, and then the past week I’ve been going through the withdrawals and adjustment period which, frankly, has been hell. Now that the withdrawals have eased up, the pain has come rushing in. It’s not completely untreated, I’ll say that much, but it’s nowhere near as effective as I’d been assured it would be, and I’m quite disappointed. Disappointed and weak and suffering an immense amount.

I stayed with my grandparents for the first five days, and I’m really glad that I did. For one, it was nice having somewhere clean and comforting to stay in the midst of my distress, plus with people who are both willing and able to help me out with rides and bringing me things, watching movies with me, etc. It does a lot for my spirits to not be alone most of the time. Not only that but there were no cats trying to climb all over me well-meaningly and affectionately, and my husband didn’t have to see the worst of it and feel the helplessness that comes when a loved one is hurting and there’s nothing you can do. Gramma and Grampa feel today too, I know, but they were not able to assist me then than he would be, so the feeling was less.. I hope.

I’m doing better with hydrating since I got home, but still not great. Having trouble eating, so that’s probably contributing to my weakness and tiredness, but I’m trying. I’ve been taking my regular pills like I’m supposed to, though, all of them. Been taking a LOT of sleeping pills and Benadryl though, just to escape, which isn’t great for me but if I accidentally OD at least it’ll stop hurting. I’m kind of hoping that one of my other health issues will kick up and finish me off, like an adrenal crisis or something, but I’m not that lucky. My body is messed up enough to make me miserable but not enough to actually die.

Clearly I’ve been daydreaming a lot about death and suicide, about escape from this physical hell (which, objectively, I know could be worse and would be without the buprenorphine), but I’m doing my best to fight the urge. I mean, obviously I’ve done play with that part until now right? I’ve got a bunch of people that I feel like I have to fight for, that I have to stick around for. Robot is one of them. He’s been really good to me since I’ve been home, not like he wasn’t before, but more doting right now because I’m more incapacitated than usual. It’s good to be home with him to be able to touch him and smell him again. The cats got crazy excited when I came back home. Ecstatic is a good word for it!

I’m doing everything I can to minimize the pain with non medicine tactics, everything I’ve added to my toolkit over the past 5 years. Epsom salt soaks in really hot water helps, but there’s a specific type and brand that works really well for me and I just can’t find it in my town anymore so I’m going on Amazon tonight to get some. Plus I’m too fat to be able to fully immerse in my tub, so it’s not as effective as it could be. I have two types of heating pads though, and an electric heating blanket, to make up for that. I’m taking potassium and magnesium like nobody’s business, in addition to using the prescription topical pain creams that I’ve been stockpiling. I’m not sure if they work with buprenorphine, though, since it blocks the opioid receptors. They’re not opiate creams, of course, but I am not sure how bupe affects the pain receptors of the body, if it blocks them too or what. I had studied up on it before making the decision, but everything is so muddled in my head of late that I can’t remember what I’ve learned recently.

I’ll tell you what, though… So far, I’m long to go back to the opiates, as expensive and hard to get and side effect laden as they are. I didn’t hurt as much, and at least they knocked me the heck out so I didn’t have to be awake for the pain they didn’t block. 😦 The for says that every day is supposed to get better. It’s been true so far when the withdrawals, let’s see if it’s true with the pain management aspect.

Life, loss, and tea parties (the unpolitical kind).

I stumbled across a blog article that resonated with me over some of the fears and stresses I’ve been wrestling with lately. I thought it funny that it was written by a professional female cyclist of all things (since I’m kind of the opposite of someone who earns money by vigorous activity!), but she wrote it at a time when she was struggling with a life and body changing disease, and that’s the part of her that I relate to.

Like so many other aspects of cancer– and of life– we accept it, and we deal with it, and grow from it and become better people because we have no other choice, but I wouldn’t wish this sort of thing on anyone and would escape and run and hide from it if I could. As the hairdresser cut my hair yesterday, we talked about chemotherapy and hair loss. I told her it was exciting in a way because I never would have been brave enough to cut my hair short or shave it off if I hadn’t had some impetus and in a way, it was exciting, but honestly, I just felt like crying. I spent most of the remaining night feeling vaguely like I’d just lost a loved one.

Cancer is fucking hard. Two months ago I was making great money, acing my classes and contemplating recruitment offers from a bunch of local cycling teams. I was in great shape and felt confident about myself inside and out. Like every other human being on this earth I found things to complain about, but on the whole I was doing well. Since my diagnosis and the subsequent beginning of treatment, I feel like my life has been derailed. I feel physically and emotionally ill. I cut back my work and school load to compensate for my fatigue. I ride my beloved bike less. I’m over $2,000 in medical bills and I’m less than a month in to my 6 months of treatment. This is easily the most difficult, scary, frustrating thing I have dealt with in my adult life. {Source}

This. It feels like this, but it just keeps coming. Chronic illness, that is. You don’t “beat it”, unless you’re one of the very lucky few that get a remission, and eventually you get the release of death, but in between… You keep adjusting, giving things up, coping…but eventually, what’s left to adjust?

Coming up to my birthday, my 30th that I wasn’t sure I’d make it to, I’ve been thinking and feeling a lot. This is one of those things. I’m having a hard time coping, now that lupus has been added to my seemingly infinite list of diagnoses. (How was I born this effed up and still made it this long?!) And I still haven’t heard back from disability. And my house is a mess that no matter how diligently I work always seems beyond my power to truly get a handle on. And no matter which way I look at it I’m losing a big chunk of my pain meds and thus my sanity and will to live and ability to leave the bed. I’m overwhelmed with medical debt and I have zero income except for what’s given me out of the goodness of people’s hearts even though I’ve tried over and over again to be able to consistently put in enough effort to keep something income-generating going.

Oh, side note: the letter I got from my pain doctor turned out to be a bunch of blame shifting twisting of the truth. The DEA isn’t mandatorily cutting everyone back to miniscule amounts; the letter was quoting the guidelines recently published to govern the prescription of opioids to opiate-naive patients, which none of that doctor’s patients are. But since they’re implementing the policy anyway in a bid to protect themselves (which doesn’t surprise me as I was never reimbursed the 2k they owed me for lying about their insurance contracts and overcharging me for a year and a half, despite repeated intervention by the insurance company and a year of intense badgering on my part), I’m not going to travel that far anymore when I can get such gleeful neglect right here in my own hometown. Hopefully I will find another doctor in the near future that isn’t afraid of high dose opioid therapy when it’s needed. It’s getting more difficult to travel, though, and to recover from travel. I started a new medication for the lupus that made me very sick while adjusting to it, but the hope is that if it’s effective it will bring down the systemic inflammation and the deadly pain levels with it.

I’m just stressed, I think. Worn out, with no recharge on the horizon. I’ve got so many plates to keep spinning, a shortage of working limbs, and all the plates are full of toxic waste. That about sums it up. I do have things I’m looking forward to, of course I do. We all know I’m a naturally optimistic and ebullient person. For my 30th birthday, which I’m pretty excited about, my friend who shares the same birthday is helping me throw a fancy tea party at this lovely local pie shoppe that does tea services too. It’s a favorite place for us to visit, and lucky we have a spring birthday because the shop closes down in the summer. It’s in a historic building with no air conditioning, and she bakes her own pies, and the summers here are absolutely brutal. I have a beautiful new dress that my husband’s dad’s girlfriend bought me, all velvet and lace, and a gorgeous, glittery pair of butterfly wings I bought at the Renaissance faire recently. I think the fact that I’ll be wearing a tiara goes without saying. If I have the energy, I’d like to put fresh decorations on my walker and my walking stick. The friend who makes my birthday cakes every year is making my favorite pumpkin spice muffins with cream cheese frosting, and I’m hoping to find little tiaras or pretty sparkly candles to put on top of each one. Squeee! The only way it could be more perfect is if the rest of my family that’s flung about the country could join us.

In addition to the fancy tea party with lots of loved ones, my sister in law is coming for the weekend and the party, and a friend from my year at the Adventist boarding academy will be staying with me that weekend! It’s going to be a wonderful celebration, and I’m very excited. I’m scared to be excited because I feel like it’s just asking something cataclysmic and disastrous to happen, like tempting fate, but it’s so awesome that I can’t help it!

Then, a few weeks later is the first big marriage milestone, the 5th anniversary! I’m hoping that we can make it to the Renaissance Festival up by Phoenix, but money is really tight this year with Robot taking on more of my non-medical expenses, getting the “new” car for me to drive around to appointments when I’m up to it, and then both vehicles breaking with one needing an entire engine rebuild. But the Faire is our thing, it’s always been our thing, so I hope we can go, even if souvenirs are out of the picture.

All in all, I guess it’s not so bad as it feels. There’s still plenty to enjoy and experience, if I can drag up the energy. It feels good to let it out, though, all of the worries. I’d been stewing for a while without really realizing it. I think the financial worries are the most stressful, oddly enough. Probably because we have so little that we spend on non-essentials. If we have to “tighten our belts”, what could we possibly give up that wouldn’t have worse ramifications on our physical and mental health?

Life. She can be a beguiling bitch, but at least there’s always tea.

Hatchet Job

I started writing a big old long thing recently, explaining the misfortune that’s befallen me and everyone with intractable chronic pain, but I realized that I don’t want to go on a long, detailed rant about the situation. A simple summary will suffice.

The powers-that-be in America who concern themselves with managing the flow and useage of medications have bought into the idea that the best and only way to manage the “opioid crisis” is to reduce the amount of pain medications in circulation. This is to be done by cutting production of the medications and lowering the maximum prescribable amount to miniscule dosages.

What this means for me, practically, is that I am being forcibly cut off from 90-95% of my current pain medications. No weaning, no substituting something else, just… BOOM. Hatchet strike, cut it off clean, sucks for you that you rely on those evil, disastrous drugs. No pity. No mercy.

Of course, I’ve been down this road before, and I know where it leads. The first half of 2014 saw me still undiagnosed beyond a “working diagnosis” of fibromyalgia, with severe, unrelenting bodywide pain and tenderness to touch, with most of my pain and tenderness centered on any and all of my joints. The pain was getting worse, and I’d tried every drug shown to help with fibro definitions and failed them all. In fact, they made me even more ill. The pain doctor I was currently seeing was adamant that fibromyalgia not be treated with opioid pain medication, and because no doctor had yet looked past the fibromyalgia label to find the roots of the “fibromyalgia” symptoms, it was concluded that I was experiencing “opioid hyperalgesia.” The doctor put me on a small dose of Tramadol, ordered me to exercise daily, and in 90 days when my system was cleared of all traces of opioids we could try a small dose if it was still needed, which she doubted it would be.

I staggered through this regimen for a few weeks before being hospitalized for 3 days but discharged because there was really nothing they could do for me, and a couple of weeks after that is when I found my current pain specialist. I’ve been seeing him for about 3 1/2 years, and while there’s been some tweaking and shuffling of different medication combinations and non-pill pain therapies through the years, my treatment plan has remained largely the same, and much more effective than any plan the previous rheumatologist or pain management doctors have tried.

Even with the meds, we know this my body is going to continue to wear down and break more and more until eventually I just don’t bounce back. Since 2014 the pain has worsened, and my body is weaker now, more frayed and fragile. If I can’t somehow engage a lawyer to get me a court order that allows me to continue my treatment, I’m not optimistic about the next year. I can expect torture and suffering of the highest order, coupled with a prolonged death spiral. Eventually my body will have to say NOPE! and finally give up the ghost.

That’s what I’m facing right now. Of course I’ll do my best to get a guarantee of my right to adequate pain management (despite the fact that I *already have* that right and the DEA is choosing to ignore it), because I’d really like to stick around a while longer. Even if every moment of it feels physically awful.


December is just about gone, and what a month it’s been! I helped my youngest sister with a Psychology project about how becoming disabled has changed my life, and then I had the appeals hearing with a judge for my disability application and subsequent denials. It was apparently stressing me out much more than I thought, because as soon as the hearing was over I crashed. Hard. It’s taken me a couple of weeks to get up and around and taking an interest in things again, but I’m still sleeping a LOT. Hopefully I’ll get some energy back soon and not be so deeply exhausted.

I’d like to put up the project I did with Julia on here, and I will, as well as a summary of the disability hearing, but I’m honestly not sure when that will happen, again because I’m just totally wrung out. That’s okay, though, because this journal bloggie is supposed to be an honest reflection of my life, especially my life while dealing with multiple serious chronic illnesses, and not getting around to both because I’ve prioritized my limited energy to other activities is a very accurate reflection of my day to day life. I’ve learned not to interpret it as a failure when I don’t or can’t get to everything that I want to, but it is hard not to get down on myself, especially when I’m feeling discouraged on top of everything. 

Anyway, it’ll happen when it happens. Too tired to hate on myself lol.

Oh, and as for the disability thing, the judge needed to consult with a medical expert aka a doctor over my large tome of records, to make sure he understands as much about the different aspects of my inability to work as he can before he comes to a final conclusion. So just waiting now. A bit impatiently. We really need the boost to our finances, especially me. I have a lot of medical debts to pay off, and no income to do it with. Always a frustrating position to be in, but one that’s become familiar, sad to say. I’m just hoping to catch a break and be able to start getting out from under the looming shadow of debt. I hate it there.