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Untitled Update

April 24th, 2015 by

I am far too fond of alliteration for my own good.

I really appreciate everyone’s comments on my last post. They mean so much to me. I’m sorry I haven’t been able to reply. I don’t have the mental capacity to do so just yet.

It’s been a month since I was released from the hospital, and I’m only doing marginally better, physically. I still can’t tolerate much by mouth. Moderate to large quantities of clear liquids make me very sick and I can only handle a little “full” liquids at a time. My doctor tells me not to push it, to take it easy on my gut. But my stomach frequently complains how hungry it is, and that’s hard to ignore. Plus, I miss food.

I miss all the things I used to be able to do. Not just eating. I miss the things I used to do for stress or pain relief–baking, weight-lifting, taking baths.

Consequently, I’m doing much worse mentally. “For now” has, in my mind, stretched into “forever” and that’s hard to ignore. I’m still grieving. Others have projected an image of “toughness” onto me, and I’ve adopted it for myself, stubbornly trying to hold onto some vestige of emotional, if not physical, strength. So I project an air of “I’m doing fine” when I’m shattered inside. I’m still not able to work properly, and my supervisor is frustrated with me, which only makes me more angry with myself.

I’m falling into a lot of the same unhealthy patterns as the last time I was on TPN. This includes distraction from my grief–when I can’t work, I constantly occupy my mind with puzzles and music, audiobooks, or TV. This is not a thing I like to do. It feels empty, so I punish myself later.

And I’m also falling into the same relationship patterns I was as last time. And it kills me. Peroxide is a doll. He wants, desperately, to make things better. I recognize that he can only make things easier. I feel bad that this has come down not only on my shoulders, but his. And so, whether to punish myself or through a misguided attempt to “protect” him from the same pain that I’m experiencing, I push him away.

I did this with Shadow, before. And Peroxide’s feelings for me are much stronger than Shadow’s (and so are mine), so he’s willing to put up with more crap from me, and he won’t allow me to push. But he can’t keep me from withdrawing, so I do. Even though I don’t want to, I do. Even though it hurts me, quite possibly as much as it hurts him, I do. Because I don’t know how to do anything else.

Yes, I am in therapy. Yes, I’m trying to process. But trying is all I can do. The wheels are just spinning.

Missing Person

April 8th, 2015 by

I haven’t been around much lately. I haven’t updated my Patreon in months. I haven’t posted much here either. I have a good reason for it.

It has been over three weeks since I have eaten solid food.

As part of my complex, multiorgan illness, I suffer from digestive tract paralysis. It’s an enigmatic, and for the most part, untreatable disease. It has rapidly progressed in the past six months, and I can no longer tolerate anything more substantive than clear liquids.

As a result, I am being fed through my veins until my gut has had enough rest. This process, known as total parenteral nutrition (TPN), is one which I find myself simultaneously terribly resentful of and immensely grateful for. This is not the first time I have been on TPN, nor will it, I imagine, be the last. (At least, I hope it will not be the last. The possibility of this lasting forever is too bleak for my mind to accept.)

I am adjusting to life on TPN. It dangerous, but it is not terrible. I have a bandage-wrapped IV line in my arm that never comes out and itches. I have a bag of nutrients and fluid to lug around for twelve hours a day. I have new and deadly risks to live with that require me to go to the emergency room at the slightest sign of them. These things are irritating, but immeasurably better than constant pain and nausea, than malnourishment and untrollable weight loss.

I am in mourning. I miss food. I miss being able to fully partake in the social activities that revolve around it without huge amounts of stress. I miss feeling properly human. The urge to eat is so primal, the lack of the ability to do so has plunged me into a pool of identity loss. I feel more artificial than animal.

Being chronically ill can be terribly isolating. I  feel as if I’m outside of my “real” life, looking in at what could be, what “should” be, unable to reach it, as it passes by, without me. And I grieve and give voice to my grief, and if anyone happens to hear, they usually don’t know what to say, so they don’t say anything. I know people care and don’t know how to express it, but their silence adds to the feelings of loneliness. I see them express more sympathy over the flu than ten days in the hospital. I know why. The flu is relatable. People have had the flu, and they know it sucks. But few people know the grief I’m experiencing, and they don’t know how to relate. And so they say nothing, and I feel alone.

And what of the boy? He is wonderful, as always. He is my light in the darkness, my breath of fresh air, and all the other clichés that spring to a love-drunk mind. He does what he can, and it is more than enough. He makes me chicken broth and fancy drinks. He helps me with. But part of me worries that he will miss the woman he could cook for, the woman he could go out to eat with, the woman whose body and mind weren’t so brittle and breakable. And that my lack of ability to lead a “real” life will outshadow his love for me. And part of me feels I will never deserve the sort of sweetness he gives me, and that he will realize it. I fear this terrible thing, this thing I have no control over, will kill his love for me. Bad enough that it should kill me.

How to Save a Life

October 19th, 2014 by

Six and a half years ago, I started taking a medication that changed my life, drastically, for the better. There is no doubt in my mind that without starting this medication, I would not be writing this today–I would be dead, probably a couple of times over.

If you have been following this blog for any length of time, you will know that I am chronically ill. My health is not always under control, but sometimes I am granted respites from the tortures that are concocted for me by my body.

Before I began taking this medication, I was very ill. My stomach had lost the ability to empty into my intestine, and my intestine fared no better, no longer able to push food through it. I suffered from frequent blockages and bacterial overgrowths. I couldn’t eat much, and what I did eat, I couldn’t absorb. I lost a lot of weight very quickly. I was told that if I lost any more weight, I’d be given a feeding tube.

Despite the severity of my symptoms, it took years for me to be properly diagnosed. Six and a half years ago, I was finally given a diagnosis, and, even better, prescribed a treatment. It was a medication in the form of subcutaneous injection, a delivery method that frightened me and fully realized for me the gravity of my situation.

In all actuality, as scary as needles are for some people (a group of which I have previously counted myself a member), they are, in and of themselves, not terribly dangerous, and not particularly painful. Six and a half years after that first terrifying needle stick, I do not blink an eye at even the most particularly painful poke.

Since then, I have dealt with situations so much more painful than needles: all manner of trials and tribulations dealing with my health insurance and this medication. From figuring out how to dispose of half a dozen cold packs and a giant styrofoam container each month to making sure someone was home for the delivery man, from finding a place to empty my sharps containers to dealing with a supplier shortage, from prior authorizations to a shipment of the wrong needles to a shipment of the medication without needles, I have been through the fucking mill.

I currently await something far scarier than that first needle stick. In three days, I will give myself my last injection. In three days, I run out of medication, and I cannot get more.

Let me explain as best I can. I still don’t quite understand the situation myself. Insurance companies don’t aim to be understandable, or friendly.

A little over a year ago, I started a new program at a new school, and consequently switched health insurance. This is something I only undertook with much trepidation. In fact, health insurance played a key factor in my decision for what graduate program to attend. (It shouldn’t have had to, but it did. Uninsured, the health costs I would accrue over only a year would be more money than I have made in my entire life.) Fortunately, the health insurance at my chosen program covered all of my medications, even the injectable.

When I transferred my prescriptions over, I was filled with apprehension. What if my new pharmacy wouldn’t fill it? What if my new health insurance didn’t pay for it? What if they refused to deliver it to my tiny little post box at my tiny little apartment?

Unbelievably, the process of getting my prescription was completely smooth. It was a dream. They didn’t have to deliver it–I could just pick it up at the pharmacy. My insurance covered it, and paid for it without a fight, or even a prior authorization. The medication even came in prefilled syringes so I no longer had to deal with the not-really-a-big-deal-but-still-a-minor-hassle of drawing the medication up into the syringe and making sure I got every last drop.

I should have known it couldn’t last. I’ve been burned by insurance companies before. Earlier this month, the insurance plan year rolled over, and my insurance decided to use a new formulary (meaning a list of the medications that they’d cover). Under this new formulary, my medication is considered a “specialty medication” and only 50% of the cost is covered, meaning I can no longer afford it. Without warning, one of the key factors to my health and happiness was ripped from me.

Before you ask–there are no alternate treatments, there is no appeals process, there is no one I can talk to, there is no one I can send H2O2 after with a hickory stick. There is nothing I can do.

There is, however, something you can do. I don’t like asking for help–not from my family, my friends, or even my readers.

But this is also an opportunity–I’ve been considering recently, unrelatedly, starting a new blog. My writing has taken a turn for the steamy as of late–some of it erotica, some of it just more graphic than what this blog usually sees. It doesn’t seem appropriate for Lab Coats and Lingerie, but I have nowhere else to put it.

Instead of a new blog, I’m starting a Patreon account. If you want to be a patron, you’ll get access to exclusive writings about my fantasies, my sex life, and other things I am too shy to talk about here. If I can get one hundred and twenty readers to pledge $1/post, and if I post once a month, that will be enough to cover my medication. I may post more often, and you can set a monthly limit for how much you are willing to contribute. If you want to see what sexy thoughts lie within my twisted brain, and you want to earn my undying (literally) gratitude, then consider pledging, and please share the word. If, for whatever reason, you can’t contribute, that’s fine too, of course. Lab Coats and Lingerie will remain here, free to read, and continuing to update. You still have my gratitude for reading this far, and for supporting me with your desire to read my words. It means more to me than you can possibly know.

Bloodletting

September 22nd, 2014 by

I wanted to give blood today.

I have never donated blood before, only had it taken from me for the purposes of diagnosis or maintenance. It’s not that I was unwilling; I was forbidden from this particular act of charity for one reason or another. But today, it has been long enough since I have lived in Europe, and enough time has passed since I have had sex with a bisexual man, and I am finally, finally above their minimum weight requirement, so I give.

I am having health problems. They are too close, too imminent for me to talk about them here yet. Just know that they are serious, and they are frightening.

Walking to lab this morning, I saw the yellow sign reading “BLOOD DRIVE TODAY” and I was seized with a fervor, a desire to do something useful with the body that has been letting me down so much as of late.

Trapped in the space between numbness and my feelings, I am not handling the news well. The feelings are inaccessible. It’s like I can see them out of the corner of my eye, but when I turn to look at them, they’re not there. They won’t let me touch them, and yet they slip out when I’m not paying attention; grief threatens to spill out of my eyes when I ride the bus home from work. Loss clutches at my chest and steals my breath. The numbness is easier to reach. It surrounds me like a blanket, stifling, yet comforting. It is all I have, so I cling to it, though I am desperate to feel.

The yellow sign poked me squarely in the heart, and I felt an inkling of hope. My body was failing me. Perhaps it could do some good to someone else.

I sat in the booth and fidgeted as the tech took my temperature, pulse, blood pressure (my claim to fame, it is always perfect). “One more test left,” he told me, and jabbed a tiny needle into my middle finger to squeeze out a fat drop of blood into a high-tech instrument. I tried to stifle my impatience. I wanted to be in the phlebotomy chair with its oversized arm rests and sticky vinyl seat. I wanted to feel the poke of the needle in my vein, to see the blood pouring out of me, to feel the lightheadedness from bloodloss and to know that loss was for another’s gain. To save someone’s life. I cannot save mine.

Meanwhile, the tech was frowning and making frustrated noises. I asked him what was wrong. “Your hematocrit is 37,” he said. “We need it to be 38. There’s nothing wrong–you’re perfectly healthy, it’s just we need it to be at least 38 for us to take a pint of blood from you.” He told me that it can fluctuate sometimes, so we tried another finger. 36. He threw up his hands and told me to eat some spinach to raise my iron levels and try again next time. “Don’t worry about anemia,” he told me. “It’s just that it’s not high enough for you to donate today. You’re perfectly healthy.”

Perfectly healthy. It made me want to laugh. If only he knew.

I left the blood drive and headed back to work, crushed. There was nothing more for me to do. My body had failed again, but it was not just letting me down this time. I silently apologized to the unknown stranger who would no longer be getting my blood, whose life I wanted so badly to save. I could not save them today.

There are times when you can only save yourself. Sometimes you can extend the effort for altruism, and save another. And sometimes, you cannot save anyone at all.

Courage

March 16th, 2012 by

Trigger warning: needles

The first time I ever stuck a needle into myself was four years ago. I was twenty-two. I was terrified. I had just been diagnosed with yet another enigmatic, difficult to treat medical condition, and I had been prescribed a medication that required a subcutaneous (or sub-Q) injection, a shot into the layer of fat under the skin. After a long and tedious diagnostic process, I was looking forward to feeling better, but I was still petrified by the idea of that first needle stick.

I felt completely unprepared to administer it. No one wanted to show me how to properly do the damn thing. I knew there wasn’t a huge risk associated with subcutaneous injections–as far as methods of administering medications go, they’re pretty benign, apart from the sharp pointy bit going in your skin.
Last summer I had two of my friends put ten needles into my back and lace them up with ribbon.  I didn’t particularly enjoy it–I’m not much of a masochist–but it didn’t bother me that much either. It was painful, but not terribly. It was emotionally uncomfortable, but no more so than many of the medical procedures I have endured. It was a little weird, a little scary. But that’s okay. As someone whose body has endured quite a bit in the name of medical science, I feel the need to balance that out by making art with my body.What I enjoy about artistic BDSM like decorative needle play is the chance to make a point. Putting needles in my back and lacing them up with ribbon is aesthetically pleasing and emotionally unsettling; when onlookers squirm with discomfort, I ask them: Why is this more upsetting to mainstream society than labioplasty? Or high heels? Or any other way people torture their bodies in the name of beauty?

But I digress–back to medical needles.  My specialist couldn’t show me how to do the injection because of insurance reasons. My general practitioner didn’t want to do it because she felt uncomfortable dealing with specialty medications. The pharmacist wouldn’t show me how to do it because that wasn’t his job. I felt like of all of these people, all of whom were supposed to be on my team, no one was willing to go to bat for me.  None of this did anything to assuage my fears. While I was used to getting needle sticks–frequent blood draws will do that to you–I still wasn’t entirely comfortable with the idea of them, or the sharp pain that went with.

My specialist was the one who finally caved and extended me some kindness, the one to show me how to do it. She was very reassuring and willing to accommodate my uncertainty. First we practiced with some saline solution. I think I did it on an orange before I gave it to myself. She showed me how to uncap the bottle and disinfect it with alcohol. She showed me how to unshield the needle and draw up the liquid. She told me to hold it at a 45º angle to my skin. And then she told me it was my turn to do it.The moment of truth.

And I don’t remember it. I know I gave it to myself on the left side of my belly button and that it burned and was red afterwards, but it often burns and is red afterwards. The terrifying event itself–the poke in the skin, the push of the plunger–I have no memory of. I have given myself the same injection every night (more or less) since then. The memory of that first time has been blurred, washed away by a long and steady, day-by-day, stream of the same action.

I don’t remember the injection itself, but I do remember what happened afterwards with astonishing clarity. I remember being in the car on the way home with my mom. I remember the intersection we stopped at, because that’s when I started to panic. My heart raced and my breath came so fast and shallow that I wondered if I was having an allergic reaction to the medication. The hard part was over, and yet I was still terrified. That first needle stick that had scared me so much wasn’t such a big deal; what it represented was. It meant a big change in my life. I felt scared and alone and overwhelmed with uncertainty of what my life was going to be like in the future. I felt weak and not at all brave.Needles have become mundane to me. Over one thousand injections later, the stick is still as painful as the first time. I barely notice it. It doesn’t phase me. It’s not because I am brave or tough or special. It’s because, if anything, I am normal. I’m human. The only super power I possess isn’t very super at all, but normal human resilience.

Soon, I will have to face another medical fear of mine. I’ll be getting a peripheral intravenous central catheter (PICC) line, a semi-permanent IV line that will start at an opening in my arm to snake through my veins into a major blood vessel and finally rest in my heart. This will be a contributing source of fluids and nutrition for me for the next two months, as my gastrointestinal tract can no longer do its job. There will be machines and bags of nondescript stuff that doesn’t intuitively seem very nutritious. There will be a hole in my body, and so there will be dressings to be changed and care to be taken not to infect the line, as line infections cause death in 15% of patients receiving this kind of nutrition. A bigger deal than a self-inflicted needle prick, to be sure, but you’d think with all I’ve been through, I could handle it. But I’m not that resilient. That statistic rings in my ears and hammers in my chest–I have a very real fear of central lines, because they end in your heart, and I need that thing to work, goddamnit. It’s one of the few parts of me that does these days.

People tell me “you’ve been through bad stuff before, you’ll be okay” and I want to hit them. I might be okay, eventually, I will probably be okay, eventually, but right now I am exceedinglynot okay. I’m suddenly transported back to that intersection in the car with my mom. I’m that twenty-two year old girl, feeling scared and overwhelmed and unready for a big life change. I feel weak and powerless and needy–all the things I hate feeling.

If courage is the ability to choose to face your fears, then strength is the quality of simply being able to ignore them. I don’t think of myself as being a particularly courageous or strong person. I’m just a person.  A person who gets terrified of what the future holds and who tries to calm her fears and handle things as best as she can, but who still melts down and cries and gets unnecessarily angry at people.  A person who writes emotional blog posts to try and process all the overwhelming things that are happening to her.“How do you keep going with all you have to live with?” People sometimes ask.

I always respond: “You keep going because there’s nothing else to do.”