I’ve been doing this balancing act for a few days now. I don’t feel comfortable sharing all the details of my medical situation on the Internet any more, not even here. That feeling defeats the purpose of having the blog to begin with. It’s all garbled up in my head and I am trying to tease it out into a long, single strand that makes sense all around.
When the Regretsians first found my blog and started making fun of me and the stuff I write (and the stuff I believe in), I was a little hurt. Eventually, I put on my big boy pants and fucking dealt with it. I posted to the forum and I addressed them here as well. The story ended very well; even though I don’t really read or post there anymore, I still go back and can always find some person I knew (oh so many
years months ago). It’s worth noting that Loki was proud of me, proud enough that He had me mark the occasion permanently.
There will always be people who will take whatever I write on my blog and use it for their personal enjoyment. I think it’s despicable and low to mine a blog about my medical condition and chronic illness for such things, but my opinion doesn’t count and I’m okay with that.
But there is real harm happening. There are people who subscribed to this blog because they really do want to know what’s going on with me, and I find myself hesitant to write about anything at all.
I prayed about it, and this is what I was Told: This blog is a sacred act. It was, is, and will be a sacrifice on Baphomet’s altar. She wants me to delve deep into the places that hurt, that are vulnerable and scary, and bring them to the fore. He thinks that my journey is important to others, not just because they care about me and want to know I’m okay, but many people read these words because it gives them comfort and insight into their own journey with chronic illness, disability, pain, and death. They need to know that their suffering matters, that their tiny prayers whispered from inside the MRI tube are being heard, that when they awake in the middle of the night because their pain is so bad they can’t move Someone is still there for them. It may not be Baphy, but it will be someone.
Baphomet also said that the sacrifice is only more blessed, bigger and better and more holy, when part of the sacrifice is continuing to post in the face of ridicule and humiliation.
This is a sacred place. This is a sacred place not because I say so, but because the Gods do. So this is the last time I will be addressing my fear of posting. This is a sacred place because the people who come here say it is so. If you wish to defile my sacred space, you act against the Gods and people who have worked to make it what it is today, and what it will be tomorrow.
This will be short, as I can still feel the effects of the Versed, Fentanyl, and Morphene in my system. Today I went to JH to get the new drain put in via Interventional Radiology. I’ve had it done twice before, so I wasn’t nervous or worried much; my only fear was that something odd would happen and they’d make me stay at the hospital, as the first two times were done as part of a bigger inpatient stay, and this was supposed to be outpatient.
I whisk through registration, and only wait for about ten minutes before it’s time to go back and gown up. I’m cool as a cucumber, watching some Netflix and joking with the nurses. They come to take me into the procedure room and other than the knowledge that this is going to hurt quite a bit, I’m still doing okay.
The first two times I had this procedure, it was done on an emergency basis, so I wasn’t able to do things like fast and limit my fluid intake. They tell me this time, that could be why the “twilight sedation” didn’t do much for me. The truth is, the first time I wasn’t given much of anything due to my blood pressure being too low; the second, I was given very little. This time, the nurse cooks up a cocktail I can feel; although I didn’t fall asleep (because, well, having a wire shoved into the sorest part of your abdomen isn’t really dreamland material), but I did find myself following trains of thought and being generally spacey. The nurse kept bringing me back to reality by loudly asking me to breath deep breaths; I couldn’t see the stat board, but I assume that even with the oxygen and my CPAP, my pulse ox was dipping. This is common for me when I have to lay flat on my back, which is why I never sleep that way.
When the procedure was over, they wanted me to shimmy from the procedure table to the gurney. I remember distinctly, both times before, being allowed to sit up, come off the table, and then turn around and hop on the gurney. This time, because I had been given much more sedation, they would absolutely positively not allow me to do this (and actually denied that it had ever been done, but whatever). Part of my chronic issue is that my arms and legs are very weak, so between the soreness in my abdomen, the terrible pain in my lower back from having to lay absolutely flat for so long, and the weakness in my limbs, this shimmy plan was not going to happen. So they grabbed some big burly doctor/orderly types, and yanked the sheet with me on it onto the gurney. Let’s leave it at: I cried. It fucking hurt. It hurt my newly punctured abdomen, and it really hurt my screaming lower back. They look at me like I’m an idiot, and without even putting something under my head to support it, they wheel me to post op.
Because of the pain, and that I metabolize sedation super fast, once I was in post op the first thing I asked for was if I could sit up. They bring me a recliner and my back is forever grateful. The nurse starts taking the personal items off of the gurney, notably my cpap machine, which some nurse has graciously packed up for me after the procedure. Except.
See, my CPAP: it’s a machine I use at night that forces air into my throat and lungs in order to bypass any partial or full blockages my epiglottis or other anatomy puts in the way. Sleep apnea is becoming fairly common, and I can name at least ten of my friends who use some sort of apnea device to sleep or who have had surgery because of it. And most machines have a water reserve, since pushing dry-ass air into your mouth and nose all night can be harmful; the machine humidifies the air (great for when I’m sleeping in hotels!), and you can control how little or much humidity is released. However, the big fat honking rule, for what I feel are fairly obvious reasons, is that you have to empty the water chamber before you pack up the CPAP. In case it’s not obvious, failure to do that means that the electronics that make the CPAP work get water all over them, and they think it’s a spring break wet tee shirt contest and stop working.
So I’m in post-op, and the post-op nurse is moving my CPAP case from the gurney to a table in the recovery space. She notices the bag is soaking wet. I groggily try to explain to her that I’m betting the nurse left the water in the chamber, and the machine is now broken. Now, to be fair, this has happened twice before to my particular machine. Since it is often people other than me who pack up my stuff, it’s been packed with water in it before. However, the big difference is, when my friends have mistakenly packed it wet, it was after a full night’s sleep, so there was very little water in the chamber. The nurse in the procedure room had filled it as though I was going to sleep for eight hours, and then only used about an hour’s worth of water.
We plugged it into the wall, and I was right. It tried to start up, but it wouldn’t go.
I don’t think I’ve seen more nurses turn pale white. Fucking up someone’s personal, very expensive, medically necessary machine is, one would guess, one of those things nurses don’t just get away with. All of a sudden, there was a lot of hustling and bustling as they were trying to figure out what to do. Secretly, Rave and I knew that she had an old machine back home, so worse came to worse I could use that, even if it wasn’t set to my specficiations, at least long enough for me to see the doc and get a new one. But even with that in hand, my biggest concern was making sure that from the moment we discovered they were responsible, and there was absolutely no way I had done anything to cause this, that Johns Hopkins was buying me a new effing CPAP. (And what good timing, as mine is old and makes a lot of noise compared to the newer models!)
Then the charge nurse announces that they can’t legally release me until they know I have a CPAP to use that night, and if we couldn’t figure something out, they’d have to put me in a room. No way, I thought. I tell Rave to call my sleep doctor’s office and explain the situation to them, and see if I could get a loaner or something. Johns Hopkins is doing the same thing on their end. I covertly planned that no matter what my doctor’s office actually said, I would tell them I was getting a loaner, and I’d figure out the finanicals later.
But as it turned out, my doc’s office does loan out machines, pretty much indefinitely, if yours is broken. However, it was now 2:15, and the office in Frederick (about an hour away) closes at 4:30. So my discharge goes in fast forward: I’m given some morphine to make the drive home a little less unpleasant. Since I’ve had this sort of drain before, they skip teaching me how to take care of it. They grab me a bunch of supplies, since I need saline flushes for the drain and they’re pretty hard to come by over the Internet; there’s other stuff, but I have most of it at home. And then they even call one of their orderlies to help Rave carry all the stuff back to the Duckbus so we can hurry our way to pick up the loaner.
We get to Frederick with plenty of time to spare, and it takes us all of 20 minutes to get the loaner. I get a phone call from Johns Hopkins Customer Service, as they’re just checking in that I was able to get to my doctor’s in time. I told her I was, and that I would be in touch very soon about how Johns Hopkins plans on fixing this issue. I must have sounded like a bolded statement, even though I was half-asleep from all the meds, because she gave me her personal line and promised that JH would replace the machine as soon as we could figure out all the details.
This is what I get for thinking any procedure involving me would go smoothly and without incident. I’ll be offline for the rest of today and possibly tomorrow recuperating from yet another tap of the Del keg. So far, the draining fluid looks serous, or not infected, so that’s a very good sign.
Being sick makes me angry.
I think it’s the emotion I feel the most often in direct relation to my illness. I get depressed, frustrated, upset, but most often, angry. Really, boneshakingly angry. I get so mad I turn red, and shake, and can’t engage in polite conversation. I have to listen to loud music and feel like a suburban teenager whose every pore is screaming for something, anything to happen.
Sometimes, that’s how I feel. That even if things were to get worse, much worse, at least then something would be happening. I would be that much closer to figuring out what the hell is going on. Every time I get hung up on some other thing – like emergency surgery – I get even more angry. When that happens, something is happening, but it’s like your parents getting a divorce. It’s something, but it totally sucks and doesn’t make life any better.
When I get angry, my muscles tense up. I become hyper aware of my body, and every little pain seems that much bigger. My blood pressure and blood sugar go up. I am not breathing deeply, and I get lightheaded. I get nauseous and can’t even sip water without feeling sick. I start to get really worked up, and maybe I even vomit. My chest starts to hurt. I can’t make simple decisions. I fall behind in my work because all I can mentally handle is staring at moving pictures. I don’t stick to my diet. I can’t express how I’m feeling to my loved ones, even though they can easily see I am not doing well.
In other words, I get sicker.
These things have long term consequences. When I stop being angry and find a little piece of peace, my muscles ache from being tense for so long, or worse they won’t untense and I find myself with limited mobility. The things I do to control pain don’t work as well, since I’m hypersensitive. Usually that ends up leading to me in one of those bouts when clothes hurt and I end up having to sleep on fuzzy blankets and can’t touch anyone. I get intense headaches that come and go for days. My jaw starts to pop from all the clenching. My blood sugar control goes out the window and I end up using insulin. I have a backlog of correspondence and other work that I now have to face in a short amount of time. My loved ones are cautious around me and feel like they can’t come to me with their shit because I’m so lost in my own. But at least I’m totally up to date on the Glee Project, right?
It becomes a cycle. I get angry because I’m sick, I get sick because I’m angry, and then I get angry that I’m sick because I was angry. I feel like I’m always just this far from treading water. I either have to artificially reboot – cancel something and create some free time so I can catch up on the stuff I fell behind on; or I end up turning to those around me and begging for assistance. Well, that’s not entirely true. Another outcome is that I just don’t get stuff done. I stop going to doctor’s appointments, I stop answering email, I stop checking Facebook/Fetlife, I stop answering my phone, I stop engaging in anything that might, y’know, make me feel human.
I know what the answer is. I’ve always known. But it’s sort of like menstruation – I’ve been doing it since I was 18 or so (late bloomer) and I’m 37 and I still don’t always recognize the signs that its on the way. Because when I get lost in the cycle, the first two things I jettison are the ones that always end up helping me in the end.
Sleep, and meditation.
I’m never sure how to address the sleep issue. Stress gives me terrible insomnia. It’s never a good sign if I’m only sleeping 4 or less hours a night, or if I’m sleeping in 2 hour shifts. Now, a part of that is also related to pain – obviously when my pain is bad, I don’t sleep as well (often I have to sleep in a particular position, and if I move even a little I wake up). Sometimes I end up taking Alteril – an OTC mixture of melatonin, valerian, and l-tryptophan. I don’t like it because the next day I’m in a fog and lack motivation to do much of anything, which is kinda not the point. I used to take Ambien, but it’s expensive and I got to a place where I couldn’t sleep without it.
Meditation is another ball game. I’m a giant hypocrite, in that when I get angry, I stop meditating because my brain won’t shut up. And yet I tell people all the time that it’s better to sit still and breathe for five minutes even if their brain won’t shut up the entire time because it helps them create a habit of it. But as someone who is supposedly good at this stuff, I have a short temper with myself when I have to go back to basics all over again. Although really, that’s meditation in a nutshell. There’s really no such thing as “an advanced meditator”. Because once you believe you are, you’re not. It’s a Schrodinger’s Cat thing. But meditation is totally within my control. Even just taking five minutes to slow and deepen my breathing would make a difference. I just need to give a damn first.
Sometimes I just need to get out of my environment and do something different for a while. That’s not as easy as it sounds, because I can’t just run away and pretend my life isn’t happening in my absence – I might as well stay home and watch Law and Order if that’s the case. I have to both get out of my routine, but not abandon it completely. So events don’t count, since I can’t spend hours answering email and writing there. (I always think I can, and then I totally fail, every single time.)
So what do you do? How do you break out of your cycle of anger-stress-pain-anger? What coping mechanisms work for you? How do you enforce meditation when you feel like everything is fruitless? I’m all ears.
This is one of those updates I really don’t want to write. It’s purely a medical update, and it’s important for people who know me to know about. I thought really hard about just emailing a handful of people about it and keep my mouth shut otherwise, but when I started this blog one of the promises I made was that I would post about medical things I am going through.
As you might have guessed from the title, this little escapade has to do with my manly parts. Seems there’s something odd happening, and they have to do two surgical procedures in hopes of both figuring out what’s going on, and hopefully fixing it.
I’ll know more on Monday, but the first procedure (D&C) will be pretty soon – perhaps as soon as next week. I have to wait for two weeks after that to undergo the second procedure (ablation).
This likely means that I will be mostly housebound for April. I had a D&C in 1996 and it took me many weeks to fully recover. Supposedly, the second one will be easier to heal, but since I’ll still be healing from the first one, I expect it will take a little longer.
I don’t feel like sharing some of the speculation about what might be wrong, although cancer has yet again been introduced into the “possible” column.
When this is over, I will be sterile. I’m okay with this.
And yes, because everyone else has asked, I did ask about a hysto, and was told that this is a better first shot in the war. If this doesn’t work, then we’ll be talking about a hysto.
I’m not really up for a lot of discussion about this. I’ll likely post on Facebook when I know when the procedures are.
This is not the entry I wanted to write; this is the entry that is ready to leap out of my head.
I thought maybe my holiday malaise had to do with my health; I’ve been feeling particularly crappy as of late and the “holiday spirit” is a high spoon activity. But the more I consciously take a step back from all the holiday craziness, the more I see each activity as an “opt in” or “opt out” situation. I can choose to decorate my house, or not. (I have chosen not to.) I can choose to send cards to my friends, or not. (I have chosen not to.) I can spend spoons on shopping, either online or in brick and mortar stores, to find gifts for as many people as I feel I want to, or need to. (I have not.) I can go to holiday gatherings or places that have holiday representations (I did this, mostly to support friends). I can do ritual to celebrate my holiday, or not. (I have chose not to, although this is a more complicated issue.)
I have read several accounts, from people who celebrate a myriad of winter holidays this month, that yearn for a return to the simplicity of celebration. One that I particularly liked was this one, written by an Anglican priest about wishing he could strip Christmas from all of the consumerism and holiday “traditions” that have nothing to do with the birth of the Christ Child. It is, after all, a religious holiday that many people have decided to secularize because it gives them warm and fuzzies about their youth. (Also note this graph that makes the point that most popular versions of Christmas songs were recorded during the baby boom’s childhood, which is why they’re recycled year after year and newer versions are usually disregarded as “fake”).
This dovetails into something about Yule/Winter Solstice that baffles me. As a religion, there’s a lot that has been done to differentiate between Paganism and Christianity. For those of us who were raised in a Christian tradition, these differences matter. I left the United Methodist Church to come to a religion that was markedly different than what I had known before. Even though I bitch about it a lot, I value that in our tradition (for the most part), it is fairly easy to become clergy. I value that our holidays celebrate the cycles of the earth. And even though right now I am generalizing how most pagans feel about something, I value the idea that for the most part, pagans are encouraged to create their own sense of how the world works and what their mores and ethics are.
The only time of year where I see an incredible amount of bleed between Christianity and Paganism is Christmas/Yule. Granted, I totally understand that most of the trappings that we grew up understanding as “Christmas” (like trees, presents, lights, family gatherings, etc) were copied from older traditions surrounding celebration of the Winter Solstice. But for me, they look and taste like my childhood, which was Christmas. But more pagans than I can count hold onto these traditions, even Santa Claus, for their families and their children. And I hear it all the time – about how giving presents and trees and lights and decorations are not the purview of Christianity.
I dunno. I’m ready to concede that if Christianity wants the crushing crowds at Wal Mart, the feeling of obligation when your family requests that you travel during a shitty time of year to sit uncomfortably around a living room and try to be a “family”, the awkward feeling when someone you don’t consider a close friend buys you a gift and now you debate if you have to reciprocate or not, the many empty social obligations that tax your finances and your health, the crass consumerism and all the work that goes into creating a traditional Christmas, they can fucking have it.
I’m much more content spending the shortest day, and longest night, of the year alone in contemplation. Granted, I also like Yule rituals that focus on sharing what we already have (not what we have gone into debt to buy) so that we all make it through the winter – but for me, these days, that’s a lot more about emotional and social support and much less about physical or financial support.
This point of view may be strengthened by having a Jewish spouse. I have always thought I was aware of Hannukah, but it took actually talking to Jews about how much emphasis has been put on a secondary holiday in order to allow children to feel equal to their Christian (and perhaps Pagan) schoolmates. What I love about Hannukah is the simplicity of celebrating a singular, somewhat unremarkable miracle – the fact that when they needed oil to last eight days, it did. As someone who grew up poor in a house that used fuel oil for heat, I know I have experienced this miracle personally. And if anything, I choose to tie my Yule thoughts to this miracle – that by coming together, we can miraculously make it through the hard times together.
My life has become much more focused on the essential parts of an experience – I need to know, up front, what I want to get out of something before I engage in it. When your energy is low, and your health is challenged, you look at everything in your life and decide what the important parts of it are. When I go to an event, I look over everything that is happening, and choose the parts of it that I feel I really want to do to make me feel like I engaged with the event. Most of the time, that means teaching my classes, and maybe getting out to a social gathering or play space. I usually choose one or two classes that I’m not teaching to attend, but understand that it depends on how I’m feeling. So even though I may not be sucking the marrow out of every experience that comes my way, I can leave an event feeling like I got want I really wanted out of it.
This Solstice, I need to spend some time thinking about the parts of Winter we tend to ignore. We get all caught up in the pretty blanket of snow, but I’m much more concerned about what’s happening underneath. The dead leaves are rotting, turning into fertilizer, feeding the soil, so when spring comes the green life can erupt and bring with it new hope. Everything we parted with at Samhain is deep within the earth, brewing up new experiences and choices for us if we can survive the dark. So many of us have “turned Winter off”, by installing UV spectrum lights, so they can survive the melancholy and feeling of separateness that comes with the dark time of the year. Someone suggested, somewhat facetiously, that “Seasonal Affective Disorder is the reason for the season”, and I started to worry that maybe I, too, had this affliction. Let me be clear, I in no way mean to belittle those who rely on lightboxes to treat their mental illness; I just think that (similar to eating “gluten free”), it has become a self-diagnosed and treated “disorder” for some.
Even though I tend to get depressed this time of year, I choose to allow myself to experience these feelings of disconnectedness and worries about survival. In this three-part essay by Kenaz Filan about the power of melancholy, zie covers a lot of what I’m talking about here.
So I’m giving myself a lot of permission and comfort this holiday season. I am giving myself permission to only engage in what I feel honors what I’m feeling about this Solstice – and this year, it’s much more about the dark than it is about the light. I did get some good gifts, and gave a few as well, but I’m not giving out gifts out of any sort of obligation. I am only going to celebrations that hold meaning to me, or enhance how I choose to celebrate this holiday. I refuse to allow the stress of consumerism, or trying to recreate some fantasy version of Christmases from my childhood, to dictate how I interact with my religious holiday.
Happy Whatever-You-Celebrate, however you choose to celebrate it.
Short actual medical update: I saw my ID doc about what to do next, since I experienced withdrawal again when I tried to treat the TB. Unlike the “evil ID doc”, who just threw her hands up and told me she just wasn’t going to treat it, he admitted that this was too complicated for him to treat, and referred me to Johns Hopkins. This is not so great in my book, as I have had bad experiences at JH in the past, but at least it’s better than *nothing*. When I tried to make an appointment yesterday, I got shuffled around for ten minutes, and then put on hold for so long that I “had been on hold for the maximum allotted time”, and was forced to leave a message. Not an auspicious beginning.
Also, due to some complications beyond my control, I have put off doing anything with my neurologist until after the new year. So right now, I’m mostly in a holding pattern.