Dr. Awesome Saves the Day

December 21, 2012 at 8:03 pm (Hospitalizations, Medical, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , )

This was an odd week, full of really big ups, some pretty scary downs, and a lot of moving in between.

I’ve been somewhat quiet around here (although I have been keeping up with my other blog. Part of it has been that I’ve just had more to say that didn’t fit here, but there’s a lot of layers to it.

As you may recall, I am now in the headlong stretch towards my radical panniculectomy on December 28th. I’ve had my presurgical appointments and test, and now it’s just a big waiting game for the most part. We’ve been running around on the Wiggio I set up for those who are actively participating in the process in some way, trying to settle all the last minute arrangements and details for those who are traveling to be with me before, during, and after the surgery. In that, there has also been significant spiritual set-up and ritual prep, and I’m very lucky to have two priests and two shamans I trust who are handling that side of things with little input from me.

Yesterday was a pretty eventful day, even though that’s not what the calendar said when I woke up in the morning. I had a little pulminologist appointment so he could clear me for surgery, and a plan to go get pedicures with my boyfriend and my girl. Nice, slow, lazy day.

As I got out of bed and starting getting ready to shower, I made a move that didn’t take the drain (currently attached to my abdomen by stitches) into consideration, and felt a shocking amount of acute pain. (My boyfriend was on the phone with his very Christian mother at the time, so although I wanted to express my dismay at this discomfort, I somehow managed only to stammer with my mouth closed and make some pretty exaggerated body language.) After a minute or two, it went from being intense to being bearable, so I decided to go ahead and take the shower. As I stepped into the bathroom, I realized my drain site was bleeding – more than just a few drops, but not a deluge. My panicked brain considered calling 911, but then I remembered they would take me to the rinkydink rural hospital in the town I’m squatting in, rather than Johns Hopkins which is about an hour away. So I took another deep breath, and called for my boyfriend. After we got the bleeding under control with some gauze pads and pressure, I made a slightly less panicked phone call to Dr. Awesome (not her real name, unfortunately) who is the general surgeon who is monitoring my drain. I explained the situation to her voicemail and then sat down for a bit to get myself together.

Forgoing the shower for the wonderful bath wipes I keep on hand for days when showers are too difficult, I was still able to get myself together enough to get to the pulm appointment on time. After wrestling with the poor check-in secretary who had to deal with all the convulutedness that comes with a legal name change (first *and* last, which I guess is much less common and therefore doesn’t have a lot of set protocol around it), all the while nurses are in the waiting room trying to sweep up the glass from a broken sliding window. It takes what seems like way too long, and then they ask me if I have the relevant records from Johns Hopkins. I sigh heavily, as I *know* that both Rave and I called them earlier this week to make absolutely positive that they had them, and we were assured that they had arrived. They had not.

I go back into the examination room, and I hear the doctor talking to the nurse about how really, this appointment is kinda pointless without the records, and maybe we should reschedule. I interrupt to add that although they are important, I’m also here for presurgical clearance for a surgery on the 28th and unless they can reschedule me before then, we might as well do what we can. He comes into the room and introduces himself, and sits down. “So explain this to me, then. What are you here for, exactly.”

I sigh. I am all too used to having a new doctor look at whatever information they have about me and have no idea where to start. I explain, “Well, there are two reasons, and I guess they relate to each other. I’m having a radical panniculectomy on the 28th, and the lead surgeon was adamant that I see a pulminologist to get clearance; in the whole crazyness that lead up to needing the surgery, an accidental lung CT found a small nodule in my lung, and I think he wanted assurance that between that, my apnea, and my weight, that I was healthy enough to endure a long surgery.”

“How big was the nodule?”

“About 6mm.”

“Oh, that’s nothing. Standard practice with something like that is to re-image in six months and then go from there.”

I sigh. I have now heard this three times. I get it. I add, “Well, I guess maybe they’re a little concerned because I also have inactive TB, for which I’m now on INH. But I haven’t had any cough, no bloody sputum, all the signs I’ve been instructed to be on high alert for.”

He shakes his head, confused but somewhat resigned. “Do you have COPD? Emphysema? Asthma?”

“Nope. And I’ve gotten through several surgeries without issue.”

“Okay. Well, since I don’t even have the time I need to do the testing anyway, and you seem like you’re going to do fine, I’ll write the letter. I just don’t understand why he didn’t send you to a Johns Hopkins doctor.”

“Well, I tried calling, but none of them had any availability until March; even when I told them my surgery was in December.”

Anyway, you get the drift. He made me a follow up appointment to deal with the nodule after surgery.

Afterwards, I was able to secure an emergency appointment with Dr. Awesome for Friday. Still a little woozy from the surge of adrenaline, I decided the three of us (Rave, Alex, and I) would go down to the pedicure place where we had an appointment as a sort of pre-surgery relaxation thing. I almost cancelled it, because I was feeling kind out of it, but decided to push ahead. It turned out to be a really good idea, especially since Rave had never experienced a pedicure before, and watching her face as they took out the various tools was delightful. We ended the day with dinner at my favorite diner.

Today, I saw Dr. Awesome and it was a really good and calming appointment. She assured me that some of the irregularities about my surgery that I saw on the 14th had been cleared up, namely that it was posted as an inpatient, rather than outpatient surgery (oops) and that they had a bed for me in ICU. She threw two extra stitches into my drain to keep it secure, since I only have to have it for another week anyway. Then she sat with me and talked, about the ragey way Dr. Sacks had spoken to me the week before, and answered some of my questions about surgery and afterwards in a much more calm, collected, and caring way. Before I left, I told her my nickname for her was “Dr. Awesome”, and she blushed.

This weekend looks to be a nice one. We are still in high gear in getting the house ready both for visitors prior to surgery, as well as starting packing since we should be moving pretty soon. We’re also going to be stepping up the house looking stuff, since we’ve only been able to see a few places and none of them have worked out one way or the other.

I will try to write one last entry before surgery, but if I go dark for a week or two, you’ll know why.


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Holiday Celebrations

December 21, 2011 at 2:25 pm (Medical, Spiritual) (, , , , , )

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.

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