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KjerstiNeT

Just a real-life girl living in a virtual world

The Dish Ran Away With My Last Spoon

I’m sick. It sucks and I am whiny and bitchy about it. I want to curl up with my cats and/or my boyfriend and sleep until I feel better. I, of course, can’t. The world doesn’t stop turning just because my lungs (and ears and nose) don’t want to work correctly. So, I push through. Sometimes, I push too hard and end up making things worse. What was minor is now major and I’m laid out flat, trying to think straight, trying to decide if a ER trip is worth the bills or if I can just pull through with my emergency inhaler.

IgG Subclass Immune Deficiency. Hypercalcemia. Asthma. Malformed sinuses, weak inner ears, tonsils that had to be removed when I was six, Endometriosis stage IV, Anxiety, PAD/PTSD, the laundry list of “what’s wrong with me” goes on and on. With all the health problems I’ve had, being a spoonie is a part of my life (don’t know what a spoonie is? Click here.). I know exactly how many spoons it will take to do homework, to sketch, to game, to exercise, to get groceries, to shower, etc. I’ve lived my life like this since I was born. Whether it was my asthma, my immune deficiency, my kidneys, my sinuses, my endo…I was always anticipating a low-spoon day. These last few months have been a blessing, though. I’ve only had (not the counting past week) one or two days were my spoons became concerningly low. I found a routine, I’ve been sticking to it, and I’ve been careful to push myself only to my limit – not beyond.

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All work and no rest makes Jack a very sick boy.

And then I did something kind of stupid. I used fabric softener in some laundry loads. Usually, I only use it with towels and blankets – things that get stored and need that extra boost of scent to keep from getting musty. My clothes are all washed in detergent only, and even then it’s the unscented stuff. It’s more for personal preference than anything, but my skin is used to a lack of fragrance in my clothing.

My oversight led to an eczema flare all over my torso and arms. No big deal, just a little itchy, but since I was starting to lose sleep I figured a trip to the doctor was in order. After all, I couldn’t afford to get sick because I wasn’t giving my body enough time to repair itself during my sleep cycle. Cue the steroids to take the swelling down so my skin could heal.

During the five days of the low dose of prednisone, my immune system (though no longer so bad that it falls into ‘deficiency’ status like it used to, but still on the very VERY low side of normal) took a hit. Everyone around me is sick right now -so of course I got it too.

I was so tired and feverish I could barely think straight. My throat had knives in it and my ears had exploded. I cancelled my lessons and made it through teaching my Comp class barely. I spent a grand total of an hour out of bed. By that Tuesday, I was so sick that my teacher actually sent me home. For those of you who aren’t graduate students, missing class is a much bigger deal now than it was in undergrad. I ended up only teaching, and even then I was barely squeaking by. I missed all of my classes – thankfully my teachers were understanding.

What started as a minor cold (I’d been fighting it long before the eczema flare) became much more complicated. Mucus started settling into my sinuses and lungs. My ears were plugged and I was struggling to hear even the loudest of Sophie’s cries for food (don’t worry, she’s well-fed but likes to pretend she isn’t). My peak flow was dropping by the hour and my emergency inhaler wasn’t doing me any good. My fever would break and then spike to 102. I was pretty miserable.

And yet this level of illness is far from unusual for me. I’m actually pleasantly surprised it took me this long to get this sick. I decided, after my peak flow dropped into the warning zone, to head in to the doctor’s office.

Now, I’m halfway through a long course of oral steroids and two rounds of antibiotics. In my state, I hadn’t realized just how bad I had gotten. I thought I was only a little sick – turns out I should have been in bed 24/7. Thankfully, I’ve improved quickly.

Monday and Tuesday were great – I wasn’t back at 100%, but I was much better. I was incredibly productive on Tuesday, and pushed myself as hard as I would if I were in normal health. This meant long hours on campus, teaching, classes of my own, writing, cleaning, socializing…a busy day even for a non-spoonie. I should have known better. I woke up Wednesday with my fever back and feeling as if I’d been run over by an especially mean train. My spoons hadn’t just been depleted, they’d been yanked out of my hands completely. I was late to my class that I was teaching (a first, which concerned quite a few of my students) and begged for mercy from my teacher for my grad class later that day. Less than an hour later, I was home, in bed, fast asleep.

 

Left: me Tuesday (feeling roughly 60% of normal)  Right: me Wednesday (roughly 45% of normal)

As I’m writing this, I’m still not doing so great. I am better than I was (50% today), but I have a ways to go before I’m actually “better.” My fever is down and my lungs are clear, but I’m still fighting an uphill battle with my ears and nose. Everything hurts and a large part of me feels that the only answer is crying in fetal position in a corner.

That’s the thing about being  a spoonie – we don’t have the luxury of taking real “breaks.” Sure, we can vent and complain to other spoonies and our loved ones, but for the most part we have to push through knowing that people who don’t have chronic illnesses will never fully understand. Vacations, time off, whatever you want to call it, are all saved up for the days when we have no spoons – and still it’s sometimes not enough. Breaks, real breaks, are rare for us. We don’t have the days to spare to just read or game or take a mini-vacation. Hell, we don’t have the spoons to spare for those activities half the time.

But that’s where I find the silver lining – in the fact that I don’t have free-time the same way non-spoonies do. My free-time is limited and precious, meaning that I have to be truly devoted to the people and activities I choose to spend my time with or on. If you are a part of my “free time,”  (even if I only see you a few times a month, or even less) it means I value you far more than I could ever really express. Taking the time to game or draw or write becomes even more important because the time I have with my hobbies is so rare.

This rarity brings me to the reasons I’m keeping this blog – awareness and a bit of an outlet. First, talking about my illnesses (even if it’s just a lot of bellyaching like this post) makes them less taboo. Some of my chronic issues aren’t that stigmatized (sinus issues for example), but some are (mental illnesses like PTSD) or are relatively unknown (Immune Deficiencies and endometriosis). Second, this space becomes a spot for folks to learn they are not alone, their struggles do not have to be undertaken in solitude. Sure, I can get whiny, but the point is that it’s okay to get whiny or fed up or angry or any of the other emotions that doesn’t fall under the “inspiring sick-person” persona that so many of us spoonies feel like we have to live up to. The emotions we experience are valid (yes, even the negative ones) and it’s important that we are there to support each other.

So, am I bitching and moaning? Yep, I certainly am. But it isn’t without purpose (otherwise I would just put this in my diary rather than publish it to a public forum). Rather, I want to be a part of a community where it’s okay to have the occasional “bitchy, moan-y” day because we, spoonies and non-spoonies alike, understand that we are not perfect little angels. Some days, we just don’t have enough spoons to be angelic.

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But, at the end of the day, I still think you’re pretty wonderful, halo or no. Yes, you reading this.

Taking Back My Voice

An addition: When I first started drafting this, I hated Trump. I didn’t think that there was much he could do to push my opinion of him any lower. And then the “locker room” talk came out. I’ve been hiding from the media, refraining from talking about why what he said is problematic. Hell, I even debated not posting this blog because of the current climate. Then I realized – this blog is more important that it ever was. Trump’s comments about women are not only disgusting, but they are proof of the culture we live in. Trump’s absolute ignorance about how to treat fellow human beings (especially women) has made it all the more important for women like me to speak up and out. I was raped repetedly as a child. I was assaulted as a college freshman. I’ve been groped, pinched, smacked, and pretty much everything else that happens to women on the street. My list of attacks against me and my body is too long to tweet at  Kelly Oxford (though I think her idea is brilliant).


This past week on my campus was Domestic Violence/Sexual Assault Awareness Week. I usually make a point to participate in a few of the events. I can’t do it this year. I can’t bring myself to visit the Clothesline Project. I can’t bring myself to walk in the Take Back the Night Rally. A year ago, I gave them my shirt, but this year I don’t think it would be healthy for me to step into the role of “healed” survivor.

For those of you unfamiliar, the Clothesline Project exists to “[bear] witness to violence against women…” To learn more about them and their amazing, powerful work, check out their website here. It took me 20 years, but last year, I finally made and gave my shirt (you can read about that experience here).

My completed shirt

I wasn’t ready before that, even though I knew the project existed. Seeing the volunteer march off with clothespins in hand to hang my representation of my story is probably one of the most healing moments I’ve yet experienced. Though I do believe that the kinds of abuse that I and so many (too many) others have faced never fully fade, I do think it is possible to reach a level where the scars no longer inhibit actions and choices. This place of healing is not a place easily reached – it requires hard, consistent work and a level of honesty that can only be experienced to be understood. Further, once you reach this spot of “healed,” there is no guarantee that you’ll stay there. Hit the right trigger and everything can collapse around you as if the years of work were no more than a house of cards made on a windy day.

I’ve healed – a LOT. I look back at where I was a year ago, five years ago, a decade ago, and the changes I see are amazing. I can’t help but be a little proud of myself and the strength that I’ve displayed in fighting back against my demons. But this year, I can’t face it. I can’t bring myself face to face with the vulnerability that came with announcing my rape to the world. Sure, I went “public” with my story years ago, but that was to spread awareness, to use my story to help others. Now, seeing my shirt would be as if my rapist were to show up where I’m typing this – massively triggering and disturbing.

The design of the shirt, though simple and, let’s be honest, not terribly beautifully executed, is the visual representation of the holes he tore through me when I was a kid. The wound still bleeds and still hurts. Each year, it gets a little smaller as I heal and begin to replace the feelings of rape with the feelings of sex and intimacy (when rape is all you know, sex becomes trigger Russian Roulette). Being touched (with consent) is okay. Enjoying that feeling is okay. I’m not dirty, I’m not “ruined,” I’m not broken, I’m not guilty, and I am not to blame.

But as I think of the exhibit, the people seeing my shirt, the visual representation of all that he did to me, I feel sick. I want to hide in a closet until the feeling passes or throw up or take a scalding hot shower to get him off of me. I haven’t seen this man in twenty years, yet he’s still with me everyday, whispering in the back of my mind, telling me I’m not worthy of love, that those who I care about will be hurt because of me. It’s a quiet voice, but it is silencing at the same time.

One day, I’ll march with the Take Back the Night Rally. One day, I’ll be able to be the much needed shoulder for other survivors to lean on. Today is not that day, and that’s okay. Sometimes, we need to take care of ourselves first.

Part of the route for the Take Back the Night Rally (during the daytime, obviously). Each bag has a candle inside and a message of support for survivors written on the outside. It must have been a beautiful and powerful sight after dark.

So, to all of you who have been support through my life and my journey to healing, I thank you. I know it hasn’t been easy for you – the irrationality of some of my fears are just plain annoying sometimes. I especially want to thank those of you who are survivors and still helped me. You are some of the strongest people I’ve ever met.

And, last, to my rapist: you didn’t win. I may have had a rough week in terms of triggers, but you didn’t win. You have no power over me anymore. You are nothing but snow that melted years ago – gone, though the grass may be a little different because of it. You will never see court, let alone a jail cell, but you will also never have me again. Your name will not go down in history – rather, it will simply be forgotten. You are no longer in control, and that will bother you until the day you die. I’ve taken my agency back; if you somehow happen to be reading this, that is the sweetest revenge that I could ever serve you.

Privacy

Some colleagues and I were chatting by the proverbial water cooler the other day and somehow we ended up on the topic of internet privacy. Though they all were exceedingly careful about what they posted to the net, I’m rather the opposite (surprise, surprise, right?). Ever since I first started working as an opinion columnist, I started cultivating my online persona. There’s a lot you can learn about me very easily on the net, more so than many people.

I spoke briefly to them about this, and the unanimous response was that since I was the one choosing to divulge the information, there was nothing inherently wrong with the act of keeping myself public. Their concerns ranged from credit card security to children regretting posting something later down the road to being able to be found easily by people who are not welcome in their lives (that I admit scares me).

I chose to give up my choice of anonymity though. It’s something I wrestle with almost every blog post. I want to write about my life and my experiences, but how can I do so while protecting the privacy of those around me? I have certain measures – psuedonyms and asking permission to name a couple- but what about the times I don’t take those precautions, or those precautions aren’t enough to keep someone else’s privacy sacred?

I discussed this with a friend in a more abstract way a couple months back.We were on the topic of saying something not-so-sweet about very real people. How can we as writers stay true to our lives without hurting those who’ve hurt us? I came back to a quote that circles the net frequently: if they wanted to be written kindly about, they should have been nicer to you (or some variation thereupon). Though I never intend to call out anyone by name on this blog, if someone did something to me that is relevant to a post, I feel an obligation to upholding my truth, the thing I’m sharing here via this blog. The perfect example for this is my rapist; I will never call him out by name. I will not give details that could lead to his unmasking. It makes me feel a bit dirty, almost as if I’m helping him get away with more crimes, but I’d rather not risk the slander lawsuit that could result in accusing a person of rape who didn’t have formal charges brought against them. The same goes for the man who assaulted me in my freshman year of college, though to a far lesser extent.

My life and my view point were shaped by the actions of these men, especially my rapist. Seeing the world through PTSD glasses since I was a youngster has shaped me into the woman I am today. I stay calm in emergencies, but I am cold, distant even, in relationships. Loud noises make me jump out of my skin, but the rush of adrenaline allows for a quicker recovery time. My fight or flight mode is broken, so I’m both always panicking and never panicking. Think of me as the Hulk, only instead of always being angry, I’m always ready to run/fight. This is a very watered down explanation of PTSD, as there is much more to the disorder than a busted fight or flight signal. All these worries and more also go for my Generalized Anxiety Disorder and depression (when it’s flaring). Because so much of my anxiety is triggered by social interactions and situations, those contexts are essential to understanding what I’m trying to get at in each blog post.

When I chose not to write under a pseudonym, it was for practical reasons. I already had a few people who followed my opinion column in the paper. They expressed a desire to continue reading after I resigned. These folks are not people I’ve ever met – our conversations have been exclusively via online, semi-anon means (Twitter, Tumblr, fan and response emails). I can’t deny I was a bit shortsighted in how this could affect those around me and how I discuss my interactions with them.

When I first started this blog, I promised to be honest with you all. Initially, I meant that in terms of not drawing an inaccurate but pretty picture of hysterectomy recovery. Now, I’m trying to apply that to blogging about life with mental illness. No surprise, but it is much harder. How do I talk about the friendship that is majorly stressing me out because of immaturity but I don’t want to end because I don’t want to lose one of the few friendships I’ve truly cultivated? How do I talk about students (both violin and composition) if something they’ve said triggered me (FERPA concerns aside)? How do I talk about relationships of all types, since so much of that is what I struggle with? Where is the line between being honest in my narrative and not violating the privacy of other people?

I don’t know these answers, and maybe I never will. For now, I’m just going to use my best judgement. Pseudonyms and permission, and maybe even a little over-caution. Though I feel like this is being untrue to my story and my truth, all of our stories are intertwined – it isn’t just my story, but his, hers, theirs. Separating these threads fairly will be a daunting task, but one I’m a bit excited to undertake.

Lie Back and Think of England?

I’ve been spending a bunch of time thinking about where I want this blog to go from here. Now that I’m all healed up (for the most part, there’s still the occasional ping of pain), my hysterectomy is not really going to make for fun or informational blog posts (but, if you ever have a question, please ask; I’m happy to help in any way I can!).

So, I’ve decided I’m going to do what I do – or maybe say “write what I do.” This will be something of a mishmash of everything in my life. The good (Makeup! Painting! Feminism! Grad School!), the bad (PTSD! Anxiety! My shitty immune system!), and the neutral (My…uh, dating life?).

At the beginning of the summer, I promised myself that I would make some major changes in my life. I came up with a three-pronged plan: improve my physical wellness, improve my mental wellness, and improve my spiritual wellness. I plan on devoting at least a blog to each one of these, starting off with physical wellness.

There are of course the basics of physical wellness that we all seem to want to improve, and I’m not ignoring those areas. I want at least 30 minutes of cardio three times a week. I also want at least 30 minutes of yoga three times a week (though that crosses into the spiritual wellness prong, too). These are fairly common goals, and usually good ones. Notice I’m not trying to lose weight or reach a certain dress size; that stuff, and why I’m avoiding it, goes under the mental wellness prong.

Nothing like a good sweat!

Save for an asthma flare that has kept me from any heavy cardio (and the bouts of laziness that like to consume me), these goals are starting to become habits. Thankfully, this is all happening before grad school gets going, so I can be ready for that major change and still keep my physical wellness going.

With all of this talk of cardio and exercise, there is one physical side that I realized I’ve been avoiding: sexual wellness. Yes folks, sex does actually does involve the body and there is a wellness side to doing the deed too.

But my circumstances are somewhat atypical. I’m a 25 year old sorta-virgin. I was raped repeatedly as a kid (thus the PTSD) and assaulted in my freshman year of college. Just kissing can be a full on trigger for me. I thought about trying to lose my pseudo-virginity before my hysterectomy by asking a friend to help me out, but decided against it.

That’s not what this is about. First off, virginity is a societal construct. The hymen exists, but it doesn’t tear (or at least not permanently) and sex doesn’t have to hurt the first time. These ideas of female sexuality are way outdated, going as far back as when marriage was for land and cows and making sure your sperm were the only sperm that your wife was getting was important for reasons more than just fidelity.

So, if I’m not actively tying to lose my virginity, what am I doing? I’ll give you a hint: sometimes it involves things that buzz.

Is it just me, or do those undies look itchy?

Masturbation, baby! That’s what I’m talking about (in more ways than one). Up until recently, I didn’t take time for literal self-love very often. We’re talking maybe a couple times a month. Maybe. Part of the reason was I was just busy and tired. There’s a lot going on and at the end of the day, I just want to sleep. Screw you, orgasms, am I right? The other, darker, part of my abstinence comes again from my sexual history. Nothing, I repeat nothing, kills an orgasm faster than a flashback. It helps that my sex drive is fairly low (I’m looking at you, anti-anxiety meds, because it certainly has been higher), so I didn’t really feel like I was missing out on much.

And why are rabbits so popular? Sure, they’re cute and fluffy, but bestiality is not my style.

And then I said something that changed my mind. If you haven’t figured out, I’m pretty damn open about all this sex stuff, so it should come as no surprise that I talk about this with (some) of my friends. One brought up female masturbation. I said to him, “[…] masturbation is YOUR time.” That sentence changed my thinking quicker than I thought possible. Even though I was the one to write it, the more I thought about it, the more I realized I wasn’t taking time for myself.

If you’re not into masturbation, that’s totally okay. I wasn’t sure I was (and am kind of still on the fence about it). Every time I was masturbating, it wasn’t about my pleasure, but more of an intellectual pursuit to understand my body and how it might respond during sex with another person. I wasn’t aiming for orgasm, feeling good, any of that. I wanted to learn. There’s nothing wrong with wanting to learn, but neglecting yourself is a problem.

So, I decided to add sexual wellness to the list of physical stuff I’m trying to improve. I stopped caring about my O-face. I stopped caring about if a guy would do things this way or that. I stopped worrying about if my pubic hair looks better as a triangle or a landing strip. Instead, I started doing what I wanted. Sometimes it involves cheesy music. Sometimes there’s only buzzing. Sometimes there’s a bit of carpal tunnel (worth it). I’ve basically told myself that I will love myself three times a week. Period. End of story. I’m treating it as just as important as my cardio.

Here’s the thing: I learned something about myself. I wasn’t just “not masturbating,” I was actively avoiding it. Sure, I have the excuse of triggers, but I know most of them and know how to avoid them (also, how will I learn about other ones, if they exist?). I was putting my pleasure second – and I didn’t even have a partner to put first! It seems so absurd, but that’s the truth.

It’s only been about a week since I started doing this, but I’ve noticed a change in myself. I’m a little more confident, just a little. I’ve decided that I deserve pleasure, that I’m worthy of pleasure, so that’s what I’ll give myself. If that isn’t a confidence boost, I don’t know what is.

 

 

CHUG CHUG CHUG

NOTE: Originally written April 3, 2016. I just forgot to publish it.

Apologies for suddenly going AWOL – things got interesting and time consuming and frustrating and all sorts of other things. So guess what I’m talking about today!

Last I wrote, I had ended up back in the doctor’s office. I was just not getting better. I still had a fever, still had an infection, and was still in a lot of pain. We decided to attack with antibiotics (again) and go from there. Fast forward a week and I was no better. CT scan time!

Because of my varied health issues, I’m very very familiar with CT scans (and MRIs and X-Rays, and just getting pictures taken of my insides in general). This was the first time that I’ve ever had to drink something lovely called “contrast solution.” No big deal, right? Just drink down a glass of it two hours pre-scan and one hour pre-scan and then flush my system with lots and lots of water…pretty easy. And, to be honest, it was. The solution came in little packets that were mixed with 16 oz of cold water. I was advised to chug.

Oh, packet of powder, you look so innocent.

Again, thanks to varying health problems, I’m familiar with how medication tastes – usually anything that’s not in capsule form (I’m looking at you, ciprofloxin) falls somewhere between “I can get this down if I don’t think too hard about it” and “dear god, pass the bucket NOW” when it comes to taste. The contrast solution was on the low end of the scale – it tasted like what an orange-creamsicle would vomit after an especially crazy bachelorette party. Essentially, it was something that would be more fitting coming up than going down, but holding one’s nose and chugging milkshakes of yuck can be a very good way to get through the unpleasantness. It was surprisingly thick, though. Given it was a small packet of powder, I didn’t expect it to turn two cups of water into something that reminded me of Thanksgiving gravy gone cold. I had trouble getting it through the straw.

But the badass cup made it more tolerable 🐍

The CT scan also involved a contrast injection. No big deal. I have an incredibly high pain tolerance (chronic kidney problems and endometriosis do have some silver linings), so digging around with a 18g cathater covered needle for one of my tiny veins (no joke, they’ve made seasoned phlebotomists cry) is no biggie. I’ve had the contrast injections before and knew what to expect: a very pleasant warmness spreading through-out my entire body culminating in the feeling that I’d wet myself (side-effects can never just be good, they always have to come with something unpleasant).

at least the post- check-in pre-scan waiting area was quiet

The scan just involves holding your breath for a few seconds and staying very still. It doesn’t take more than fifteen minutes or so. Since it was an abdominal and pelvic scan, I never was fully in the machine, so no claustrophobia to worry about either.

pictured: yet another souvenir hole from this proscess

The results were back in a day – the scan showed nothing that would point to anything seriously wrong. The abscess had even shrunk to almost nothing. Good news and bad news – we know that it’s nothing internal, but we still didn’t know what was wrong. I was advised to rest, wait, and monitor. We think that the infection had just slowed down healing and I might have been impeding it by doing too much too soon. Turns out that was exactly it. A week of what was essentially bed rest has me feeling like I’m almost back to normal.

As for the suspension…well, it came out fairly easily. I drank a MASSIVE amount of water, felt like there was metal in my colon (due to heaviness), and literally shit white for a couple of days, but that was it. In light of the rest of the process, this was nothing.

Take a Deep Breath

“Stop worrying so much.”

“Just take a breath, you’ll be fine.”

“There is nothing to worry about.”

“Just think about something else.”

“You worry too much.”

You all probably know exactly what I’m about to say: mental illness is a real thing that shouldn’t just be dismissed. Each of the above statements I’ve heard; sometimes they help (like reminding me to take a breath), sometimes they don’t (telling me to stop).

I’ve been diagnosed with Post Traumatic Stress Disorder (PTSD – thank you, childhood rape!), a generalized anxiety disorder (GAD or just “anxiety”) and a panic attack disorder. My brain can’t tell the difference between “Things are totally normal” and “Holy shit we’re going to die right now if you don’t fix this thing that is totally for sure broken and probably somehow your fault!!” Essentially, I’m in a constant state of fight or flight mode.

This is my brain on trauma. Any questions?

Growing up, I hid it pretty well. I was awkward, sure, but who wasn’t? Usually, I gave people no reason to suspect anything was less than Disney-level perfect. When people I grew up with find out how many times I was suicidal as a preteen and a teen, it’s usually met with utter shock. I seemed happy. I was fairly popular in junior high (not so much so in high school, though), had a stable home life, and had friends who I cared about and vice versa. And yet, there were times when, frankly, I should have checked myself into a hospital. I was never, EVER a danger to others – to myself, however…well, that’s still a daily struggle.

Something triggered me a couple days ago. I’m not sure what it was – I’ve wracked my brain and so has my therapist. We’re thinking it was simply that I didn’t give myself enough time to rest after a few very busy days and ran out of spoons, but that doesn’t account for the fact that I’m NOT sleeping. Rather, I’m panicking. My mind is racing circles around itself about everything and nothing. I can’t keep a coherent thought in my head for very long, much less articulate it verbally. Eventually, my mind (and body, since I tend to tense up) simply shuts off. I don’t always know when that’s going to happen, and it doesn’t always happen, but usually it results in me losing track of time and “waking up” where I wasn’t before. Thankfully, I have almost never left my apartment when this happens.

I took yesterday off and scheduled an emergency meeting with my therapist for this morning. I’m lucky that my psychiatrist has worked with my college and I am allowed accommodations as this DOES count as a disability. Today, I made it to my appointment, to class, but had to cancel my lessons and push a movie with a friend to another night. I’m currently in my room with my cat Dinah (who is an emotional support animal, if I haven’t mentioned that before) trying to just breathe. My body may be telling me to panic, that my life is in danger if I don’t act right this second, but I at least know it’s a false alarm. I just can’t find (or worse, don’t have) the shut-off switch.

…like a light switch.

Identifying triggers used to be pretty easy. Red cars, the smell of apple juice and graham crackers, stairwells, all were former triggers for me. And though I won’t lie, I still can’t stand the smell of apple juice (though I love the taste!), it’s no longer something I actively avoid. It no longer sends me into fight or flight mode. Each of my triggers had a direct relation to the abuse I suffered as a kid. When new triggers pop up, though, things get hairy.

For example: a new trigger showed up in late middle school. I couldn’t let anyone touch my shoulders or neck from behind. I’d freeze up and/or scream. This lasted until a couple of years ago, and I’ll still visibly jump if someone comes up from behind and taps me on the shoulder. I did a bunch of theater and people knew to just relax and NOT massage my shoulders when we’d do pre-show massage circles. Thankfully, I’ve not hit anyone for touching me there, but I did come close a few times. I’ve gotten over this trigger through a combo of exposure and general therapy, but it took a lot of work.

One touch to the back of my neck and shoulders could do many things. It could simply put me in a bad mood, or it could incite night terrors, to name a couple. The same went for my other triggers – usually, I just avoided them or went into high-alert when near one, but sometimes things got nasty. I’d stop sleeping (the longest I’ve gone is around 3 1/2 days) because my nightmares would be so bad that my brain wouldn’t let me fall asleep. I’d either stop eating entirely or lose complete track of what I put into my mouth (combine that with a history of disordered eating for body image reasons and there’s a whole ‘nother trigger for a whole ‘nother reason). Is it any surprise that I take relationships (both platonic and romantic) slowly?

And that’s just triggers. Sometimes it’s for no reason at all. You know that sensation when you’re falling asleep and suddenly your brain goes WE’RE LITERALLY FALLING RIGHT THIS SECOND! HELP!!? My brain will do that with memories of my abuse. I’m back in that basement, and he’s hovering over me. I can feel his breath on my skin again. Flashbacks like this usually result in me kicking as hard as I can, punching as hard as I can, throwing something (usually a pillow) at what I think is him, and sometimes just jumping out of bed and running. It only lasts for a few seconds, just like that falling feeling. Usually after a couple of kicks or a punch, I’m fully awake and realize what’s going on. That in itself is a trigger, too. I won’t sleep that night, most likely, and if I’m lucky I’ll avoid a full on panic attack. Events like this (as well as the dissociation and some other reasons) are why my therapist, psychiatrist, and I have been looking into me getting a service dog for the past year (that’s also a whole ‘nother blog).

Living with PTSD and anxiety makes each day a battle. Because I was so young when I was first abused, my brain sees “fight or flight” mode as normal. The upside to this is I’m excellent in emergency situations that require me to keep my cool (like EMT work), the downside is, well all of what you’ve just read and more.

Not always the case

What bugs me the most, though, is the secrecy I feel I need to keep around it. I don’t give into this feeling (obviously), but mental illness is a taboo. It’s not something to be talked about in polite society. We should know to keep our mouths shut and our illnesses hidden. My students will be much more understanding if I say I’m canceling lessons because I have a stomach bug rather than because my PTSD is flaring (and parents even more so). But the pressure from being on high alert 24/7/365 builds up. Eventually, the emotional pimple has to pop. Cue the panic attacks, the dissociation, self-harm (no, not anymore for the most part), and so on and so forth. The pressure is relieved and the cycle starts all over again.

I’ll admit it, I’ve lost track of what the goal of this post is. I’ve debated scrapping it and starting anew with an actual draft rather than just word vomiting and going from there, but this, as I read it over, this is as accurate representation of what my mind is like right now. It can’t keep things straight. It can’t remember what the point of my writing this was (and there was a point…I think). This is just a tiny peek into the mind of a person with mental illness going through a flare. A tiny, itty-bitty peek that doesn’t really do a good job showing what panic feels like. But it’s the best I can do. And to those of you out there, reading this and relating, stay strong. Keep fighting.

Enter a caption

Bern, Baby, Bern

I’m not a hugely political person. Had you told me I’d be this way ten years ago, I wouldn’t have believed you. Growing up, I spent a good amount of time wanting to be President. Then I realized how much I dislike crowds and kissing babies and so on and so forth. I stayed passionate about causes and keep my knowledge of current events as fresh and informed as possible.

If you had told me six months ago that I would volunteer (spontaneously, too) to go to Bismarck as a district delegate for Bernie Sanders, I’d have called you crazy. Hillary Clinton was running! I couldn’t NOT support her, right? But the more I started listening to Sanders and to Clinton, the more I realized that I am, in fact, a democratic socialist at heart. Sanders lined up with my ideals better than any candidate has that I can recall (even before I could vote). As I told my cousin in December, I didn’t dislike Sanders, but I wasn’t “Feeling the Bern.” Oh how that has changed.

I am not delusional; I realize that it will be nearly impossible for Sanders to secure the nomination. This does not mean I will waver in my support of him. I may not have been with him at the beginning, but I will sure as hell be there at the end.

I couldn’t resist. That said, this image will be the ONLY candidate-bashing I shall engage in; and yes, that includes Trump/Drumpf (save for his name).

My poor friends have been suddenly blasted with pro-Bernie and pro-Sanders (let’s be honest, the way they portray him changes with how they refer to him) media on Facebook, which I usually keep mostly politics-free. My Twitter stream is alight with excitement over the coming caucus on the 18th. I’m even considering campaigning to be a national delegate (though the more I think about it, the less of a good idea it seems). I’m texting and calling EVERYONE. In the last few hours, I’ve become that person everyone hates – the person shoving politics down the throats of the unwilling.

It was hard to put a finger on the actual reason for my excitement. Was it because Sanders won my area by a landslide (and went on to take the state of ND as well)? Was it because it was slapping the face of the AP press who called things too early (even if they end up being correct)? Though those things contributed, sure, it’s not the reason I left the district caucus shaking with excitement.

Even slim chances are still chances.

I live in a state who has voted red since my father was four years old. It is considered a safe bet that North Dakota’s electoral votes will go to the Republican nominee (though I will admit to some doubt after seeing how many people turned out to caucus). Essentially, when it comes to the presidency, my vote does not count. I know that is a very unpopular thing to say, but given the history of North Dakota’s voting and the fact that we only have 3 electoral votes anyway (so, we don’t really matter much in the long run), I’ve long given up the belief that “every vote counts” in a presidential election. If you’re in a swing state, yes. But for states like ND, it doesn’t usually work out that way. A quick aside – GO VOTE. Just because it may not make a difference doesn’t mean you should take that gamble. And I’m only speaking of presidential races – be active in your state and city politics!!

Even if you’re like me and think it won’t matter in the long run…go vote and maybe prove yourself wrong.

Back to what I was saying though; my whole voting life has been in states where I knew that my voice wasn’t going to make a difference in the fact that the state would go red. Filling out the ballot was more a form of futile protest than actual exercise of rights; at worst, it was because I was duty bound as a good American.

This race for the Democratic nominee is the first time where my voice has mattered. My voice, and the voices it’s shouting with, is helping to shape history. No matter who claims the nomination, this race has been one that will make the history books. The movement that Sanders and his team have created is, to my knowledge, unprecedented. We’re at the end of a long road and probably not going to see the goal we’d hoped for, that doesn’t mean we shouldn’t finish. My standing by Sanders by being a district delegate (even though it is a small voice among many) rather than just giving up and supporting Clinton is my embrace of my rights to have an opinion and to vote. For the very first time, I have the slimmest chance to help shape history into a future that would be good for all of us. Yes, it is selfish, but when I’m 90 I want to be able to say that I was on record as supporting Sen. Bernie Sanders in his race for the presidential nomination (and then hopefully his race to the election).

Tonight, my voice (and the voices of so many others) was heard. My voice mattered, and that isn’t something that your average, pink-haired, tattooed twenty-something can say often when it comes to politics. That’s were this euphoria is coming from – the fact that I actually mattered. It scares me to think that if I, and everyone else like me, had stayed home thinking our voices wouldn’t be heard in the din, the caucus would have gone very differently. The only person I can thank for lighting a fire in me to actually care that my voice is heard is, in fact, Sen. Sanders. I can’t cheapen that by backing down in my support now. If Sanders concedes or loses fair and square (which, I remind you, he hasn’t done yet), then I shall happily, if not a bit bittersweetly, support Clinton in her campaign. I am not “Bernie or bust.” I’ll still hang my Bernie Sanders for President sign proudly, though – this caucus (and this whole race) has reminded me of the fire I used to have inside of me, before I became disillusioned with the world at large. I’m feeling the Bern, and I don’t think that flame will go out for a very long time.

Glad to have my inner fire back.

Forward Motion

My apologies for the silence – the last month has been a bit of a whirlwind.

The quick overview: my infection finally started clearing, my graduate application to UND was accepted, and I was able to receive a refund for the classes I had to drop this semester. I’ll be taking one class this summer (starting next week) and graduating just in time to start my GTA.

I didn’t want to write for a couple of reasons: first, I was unmotivated (sorry) and second, I didn’t want this to become an online diary. Things have an emotional roller-coaster, what with dropping out and then getting into grad school. Some of my friendships have gotten a bit complicated. Family matters have been taking a bunch of time (and that’s all I can say about that). Don’t even get me started on dating (even my gynecologist thinks my love life is…complicated).

If found, please return.

Things are a little more stable now – or, I’m at least being more of an adult about it and dealing with the ambiguity that is life. I’ve been working on my three-tiered plan – things are going much better now that I can move around without my abdomen screaming at me.

Which brings me ’round to the “plan.” I’ve modified a bit, as I expected to. I’m shooting for running three times a week rather than every day – something a bit more realistic for someone like me. As for yoga, I’d underestimated how much my abdominal muscles were affected by the surgery. I’m fat, but under my blubber I have muscle, and quite a bit of it. It seems that there’s a lot less now in my abdomen (I wish I could say the same for the fat). I can’t get through 30 minutes even the most basic of yoga workouts (yes, I know there’s more to yoga than the physical health benefits, but right now I’m focusing on the physical…we’ll talk spirit later). I like the kind of yoga that leaves me utterly exhausted – I find my meditations are much clearer after that kind of  yoga versus a few sun salutations. Maybe it’s a spiritual shortcut I shouldn’t be taking, but I still don’t feel “right” unless I leave my mat sweating through my bra, shirt, and pants.

The other night, I started trying to work my abdominals back into some semblance of shape. Ironically, I’ve been doing kegals ever since I could tighten my pelvic floor without screaming in pain. It didn’t occur to me that I should be doing the same with my abs, especially considering they’re so well hidden (’cause pelvic floor muscles are so easy to see).

I shall never have a six pack and I am okay with this.

Today, physically, has been hell on earth. I’m used to being able to whip out literally hundreds of crunches, no issue (again, yes, even with the flabby tummy). I couldn’t do that last night…but I tried. I shouldn’t have tried. There’s a difference between general muscle-soreness (like the kind I get after trying to shave time off of my runs) and surgery-healing pain (like the kind that you get when you’ve had your abdomen cut open so an organ could be removed). I had trouble sleeping last night due to pain. I’m actually thinking I might have to break into the stash of big pain killers that I have left over from recovery in order to get a good night’s sleep tonight. I could barely play in lessons (and yes, violin does involve abdominal muscles). Oddly enough, running wasn’t an issue, though. I’m planning on cutting back on the crunches and upping the planks.

Spiritually, I’m still researching. I’ve talked with people who I respect about their spirituality (yes, I know how to go about this without prying or overstepping my bounds) and have complied a bit of a list of what spiritual health means – at least to me. I want to give back to the community somehow. I’m thinking volunteering as a coach for youth volleyball or softball, but that’s not something that I can do until I’m 100% again. I don’t like the idea of donating money, food, or clothes mostly because that doesn’t really do anything in the long run (unless it’s money for research, in which case I’ll empty my pockets). Please don’t misunderstand – I still donate clothes and food too, but I want to do more than just give out the canned goods I’m not going to use and clothes I don’t wear anymore. There’s more I can do than just that.

However, something that came up repeatedly when discussing spiritual wellness was the idea of living for yourself versus living for others. I’ve always thought that putting yourself first automatically put me in the “living for myself” category – and I don’t want that. However, what happens when I get sick? You can’t pour from an empty cup, right? I’m struggling to find a balance giving while maintaining an equilibrium. It’s a work in progress, for sure, and definitely something I’ll keep wrestling with.

Time to work on me.

As for the third tier, mental health, I’m starting to get some more concrete goals set. I know that I want to learn how to handle schedule-upsets better – it’s a pretty good starting point. I’m also working on being better at recognizing panic attacks when they’re happening in order to better recognize triggers. Panic attacks are funny that way; they’re not just hyperventilating while in fetal position. Sometimes they are a suffocating numbness that utterly blinds you. Other times my mind goes on a flight of fancy while my body goes into autopilot. I’ve gotten so used to working through them (which, to be honest, didn’t work) that I’ve gotten really bad about identifying them when they start. I’ve already come far enough to recognize when they’re over or happening, I just need to do the work that will help recognize them in time to stop the panic.

I’m also starting to focus more on my love life. Though part of this is probably the increased sex drive, another, bigger part comes from the fact that I rarely, if ever, actually go for what I want. I made strides last summer that I cannot forget, and I’m glad I took those steps – they’ll help me on the long road ahead. I’ve learned that it’s not only okay to ask for what I want, but beneficial in the long run. What’s bigger is that I’ve gotten a bit more used to the idea that I deserve to be happy (just like everyone else does). I’ve never, ever had any doubt that my loved ones deserved happiness, but for some reason I could never let myself be okay taking steps to make myself happy. Something in me felt like I didn’t deserve it – and I’d be lying if I said that something isn’t screaming at me right now to stop talking and go make myself throw-up (I know, I’m so healthy).

Ultimately, this surgery is something that has worked in all of the ways that I hoped it would. I haven’t had a single smidge of an endo flair. My kidneys haven’t been doing anything they shouldn’t and, since all the endo around my ureters has been burned out. Things are really, really good right now, and looking to stay that way. Now is the time for me to take my life and turn it into a life rather than just a fight to try and reach “normal.”

 

NOTE: This was going to be published on May 11, but I got lazy and then anxious and put it off until now. Click here for featured image.

Just Can’t Wait to Get on the Road Again

I’ll have another blog up relating to hysterectomy stuff soon – I’m wanting to blog about the CT scan and so on and so forth.

However, today personal life and recovery are going to be the focus (again). Today has probably been the most emotionally trying day of recovery. I finally made the hard decision to withdraw from school this semester. I’m hoping to get at least some of my tuition back, but since I had to make a special circumstances withdrawal two years ago for a case of pneumonia that nearly killed me might affect the Dean’s choice.

At least Derek understands the struggle
This means I won’t graduate this semester. For my degree, I need one of the classes that I was taking, and this class is only offered in the spring. This will be my seventh year as an undergrad. I can’t keep this up, financially or mentally. I have to move on, one way or another.

Part of my plan, pre-complications, was grad school. Today, I found out that I’m on the waiting list. Overall, this is not bad news. I’m not the best candidate for many reasons, but I’m also a great candidate for other reasons. I can be okay with this decision. I can’t say I’m happy with it though. I have this feeling of being able to do better work and not being able to because of physical limitations. To put it another way, I know I can do good work, but something keeps preventing me from doing so (and sometimes that something is myself).

So, I’m taking the rest of this semester and summer as an opportunity. I need to “get healthy” (more on that later) before I can devote myself completely to anything scholarly. I need to get to the bottom of why I’m constantly getting infections. I need to work on coping with upsets in plans. As my posts from my recovery start to die down, I plan on blogging about what I’m doing to improve myself.

Pictured: phase six of the plan
I realize the goal of “get healthy” is probably one of the shittiest goals out there. It’s not specific, there’s not a step by step plan. As everyone says during New Years, resolutions need to be specific.

So far, I’ve divided health up into three categories: physical, mental, and spiritual.

Physically, I want to get back to running every day like I was during the summer and fall (turns out I actually have come to like running thanks to the Zombies!Run app). I also want to do yoga at least a few times a week (and this crosses over into spiritual). I don’t look at weight as a goal, losing or gaining. I’ve had eating disorders in the past and would like to avoid falling into that hole again. I want to be able to play a game of soccer with my friends without feeling like I should be the ball rather than a player, or sweating a large amount, or  wheezing. That’s how I’m measuring my success here – in how I feel. Not how I look, not what I weigh, but what I can do.

Mentally, I want to develop coping mechanisms for when things go to shit. I do well with schedules. For example, at the beginning of the semester, I was up every morning at five and doing an hour of yoga. I ate a homemade, healthy breakfast. I went to class. Grabbed lunch (usually a salad from the Student Union) and did homework. Went to my afternoon classes. Lessons in the evenings brought in a (admittedly small) paycheck. I worked out a few time a week in the evenings and even had time to game, draw, and chill in general. Weekends were wonderful since I usually had my homework done before going home.

That’s how it always starts – I’m doing well, really well. And then something throws me for a loop: surgical complications, pneumonia, a PTSD flare…I can’t get my train back on the tracks. I need to learn how to cope and how to fix it. Hello therapy!

Yeah, I think the problem lies more with me than my mom, Freud.
Spiritual wellness is probably hardest for me to define since I don’t really align myself with any particular religion. I find Buddhism and Hinduism line up with my values and beliefs fairly well, but I’m reluctant to actually call myself either. I definitely believe in the “Do unto others” that Christianity preaches, but I’ve had so many negative experiences in the church that I want to continue to distance myself from Christianity.

As for the spiritual goals, I want to meditate every night. I want to learn more about both Buddhism and Hinduism. Again, I want to do yoga at least three times a week (it makes meditation better). I also want to start giving back to the community, but I don’t know how to start doing that. Some folks I know would argue that community theater counts, but I disagree. Same thing with donating used clothes – it isn’t coming from a desire to help, but to clear out my closet. I’m think about checking out a few of the food pantries around and seeing what they offer in terms of volunteering.

I still need to refine these, as well as prioritize them and my hobbies. How much do I want to write this summer (I have at least two people who have threatened bodily harm if I don’t finish the draft of the book I’m working on soon)? How much do I want to sketch? Paint? Sculpt? And there’s the huge amount of time I want to spend with my friends…And the need for another job.

I guess the overall conclusion I can come to is that I have some time to figure it out. I’m both not starting and starting tomorrow. I’m not somewhere where it’s a good idea to run five miles every morning, but maybe I can do some situps and pushups tonight. I’m taking the necessary steps to start working on coping mechanisms already.

Mostly, I’m impatient. I want to be able to start NOW. Full throttle. Damn the torpedoes, full speed ahead…but my body isn’t allowing me to do that, or at least not in that way. I’ll have to settle for starting slow. It’s better than not starting at all.

Truth

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