Today was pretty much that – just a no good, very bad day.
I had my first appointment with Johns Hopkins Pain Management department. I don’t remember if I told this story to you yet, faithful readers, so I apologize if this is old news. When I was released from the hospital in April, the Acute Pain team increased my opiates to help with the pretty intense surgical pain I was dealing with – remember, I was going home with a large open wound – and I made it abundantly clear that it was vital that they communicate and get clearance from my pain doctor. They told me they had, and I called his office to verify and was told I was clear to go home. The hospital gave me a week’s worth of meds and I was to follow up with the pain doc right away. Well, when I went to his office, I was informed that no, he had not agreed to this regimen, and he was refusing to write more scripts at that level. I never got to speak to him directly, and was sent home empty handed. I lived on my secret stash of extra meds until I was able to persuade my surgeon to write a month’s worth, to cover me until today.
And keep in mind, when I was released from the hospital, the plan to switch to JH’s pain clinic was already in place. So I stupidly assumed that there wouldn’t be a problem getting, if not the same regimen, a slightly stepped down version now that the wound is closer to healed.
The appointment was made for me without my consultation, and was scheduled during an event I attend every year without fail. I called every week, sometimes twice, in hopes of a cancellation so I could be seen sooner. This did not occur, so I had to limit my attendance of the event to just the weekend, much to my sadness.
I first met with an intake doctor, who got to hear the short version of my six year struggle with chronic pain. It was she who informed me that it was up to the doctor if he would write scripts for anything, and I started having an internal panic attack. I was literally down to my last few pills, having gone through most of my extras waiting for the surgeon. I had not even imagined such an outcome, and would have made different choices if I had known.
The doctor came in, and the highlight was that he was a genuinely nice, engaged doctor. He seemed actively interested in me and what I had to say, which is not a given these days. However, even though his tone of voice was pleasant, he had some pretty terrible things to say.
The biggest surprise is that their pain clinic doesn’t actually prescribe opiates. He informed me that the way they work is in conjunction with a patient’s primary care doctor (PCP); they send the PCP a list of what to prescribe, and the PCP writes the scripts. Their theory is that it is best if the majority of your medications are all prescribed by the same physician, which holds merit. However, since my current PCP had worked to get me into the first pain program I was in specifically because he was uncomfortable writing me a maintenance opiate regimen, I knew this would not end well. They did, in fact, call him and ask if he would play ball, and unsurprisingly he said no. Before they called, they had stressed that I really needed to find a PCP closer to where I live now (I haven’t changed PCPs since the separation), and now I have to.
Tell me: How likely do you think it is, that I can find a new PCP who is a) covered by my insurance, and b) can see me in the next month, and c) is willing to write opiate scripts that are managed by another doctor?
Because that’s exactly what I have to do. He did agree to give me a month’s worth of scripts (including a new med called Mobic, which supposedly potentiates opiates better, and a large increase in my tricyclic), but it was dependant on me committing to making this happen. I even shared with him that I had looked for a local PCP a few months ago, specifically looking for one that participated under the JH umbrella, and none of them had new patient appointments in the next three months, if at all. His assistant did give me a little hope: she said if I find one and the only block is not being able to see me in a timely manner, their office will call and push the issue on my behalf.
If that was the only commitment I had to make in order to get my meds, I would have been stressed but accepting. The next item was a hard swallow, and readers of this blog will totally understand why.
I have to meet with a weight loss specialist; one that he has worked with in the past, at JH.
Now, the upside is that she isn’t a surgeon nor does she advocate WLS. (I reiterated that part of my history, including and stressing the part where at least three neuros have said that the rapid weight loss program Dr. WLS put me on may have caused and/or triggered my chronic illness to start with!) But no amount of hemming and hawing would change his mind: no weight loss doc, no meds. He stressed that she works via physical therapy and “appropriate exercise”, whatever that means, and nutrition counseling. I told him I was already on a antiinflammatory diet that is very healthy, but no dice.
I am not pleased. But a chronically ill pain patient has to do what a chronically ill pain patient has to do, I guess.
As a final fuck you, they wrote my oxycontin prescription with smaller doses of immediate release pills instead of the larger extended release doses, merely because their automatic system didn’t have my dose as an option. So instead of four pills a day, I have to take 12, in two groups of 6, at different times. I am not looking forward to figuring out if I’m actually going to have to set an alarm for the middle of the night to take a pill, or if my metabolism of the med will let me sleep through the night.
I had to race from that appointment to my surgeon’s office on another floor, even though I made it clear to the pain people I had another appointment to make. The surgeon’s appointment was in the last time slot of the day, so there was a chance that if I were too late he’d have left for the day.
I arrived a few minutes late, but I had called them from the pain clinic to let them know I was coming. They told me if I were more than 15 min late, I might be SOL. In hindsight, I should have taken the chance to laugh.
I waited for over an hour to see the surgeon. My companion/driver took the opportunity to run my scripts to the in-house pharmacy. The receptionist hinted that something had gone awry, but gave no details. Finally, I was called back.
The reason I was seeing him is because my home health nurse had a freak out. On Monday, she was measuring the depth of my wound (which she does every time she changes the bandage), and something odd happened. We know it’s been 11cm or thereabout lately, but this time she met resistance after 5 or so. She pushed gently, and something gave way, leaking a large amount of fluid – some of it looked infected. She had originally wanted me to go to the ER, but eventually we agreed that I would make an emergency appointment to see the surgeon instead.
I told him this story. He didn’t even pull the gauze out of my wound, but stuck the cotton-tipped applicator (looks like a super long q-tip) in about 4-5cm, and saw no problem. I tried to explain to him that it was likely he was meeting the same “resistance” that the nurse had, but it was obvious he was rushed. He saw no obvious signs of infection or any other concerns, so he advised me to tell the nurse to make sure she’s getting the sponge all the way into the wound (pushing lightly against any pressure). He asked after my writing, and I told him I had seen a few search hits that used his last name. (I honestly can’t remember if I had used it before or not.) He was surprised that I blogged about him, and told me he’d be googling my name and his to see if he found it. (Hi, there, Dr. Sacks, if you or one of your residents are reading this!)
To add insult to injury, even though they had the scripts for almost two hours (half an hour longer than they had told my companion they’d be ready), I still had to wait for another 30-40 minutes before we could finally leave. All of this waiting meant that we had to negotiate Baltimore’s Inner Harbor on a Orioles’ game day, which is no picnic.
When I got home, Rave had already returned from work. After my companion left, she informed me that the landlord had been to the apartment on Wednesday while I was at a different doctor’s appointment. He had come to fix our hot water pressure, as it was down to a trickle. However, it seems he decided to tour the entire apartment, including both our bedrooms and bathrooms (completely out of the way from the kitchen) and is not pleased with our housekeeping.
Our apartment is disorganized, which we both totally own. We’re still figuring out where everything goes, and there are wound VAC and other medical supplies in boxes in the living room, where the nurse does my bandage changes. However, the important distinction (to me, anyway), is that our place is clean. The carpets had been vacuumed, the kitchen floor had been mopped a few days prior, the dishes were in the dishwasher, etc.
Either this distinction didn’t matter to him, or he is a harsher critic than we, but he had sent Rave an angry email informing her that he considers the state of our place in violation of our lease, which we are going to reread forthwith. He has given us 30 days to straighten up or he will consider the lease broken.
Rave and I came up with a game plan of three parts. I am going to write a very calm and polite letter to the landlord, reminding him that he had been informed prior to the lease signing that one of us is disabled and was just about to have major surgery; there is only so much I can personally do to keep the clutter down to a minimum, and the medical supplies in the living room must stay there in some form or fashion. (I’m not thrilled with the idea of having the nurse work in my bedroom.)
Secondly, Rave, and to what extent I am able, I, will focus our efforts on making things look more organized. He also specifically complained about our garage (calling it a fire hazard), because we have chosen to use it for storage rather than for a car. There is a large, clear walkway from the garage door to the door into the house, but obviously this is not enough. We may have to find a more permanent storage facility to store some of our things in, and/or decide to chuck some of our stuff towards a Goodwill or something (even though we’ve already significantly paired down our belongings, the AEU is much smaller than where we were living before, and we both have a lot of “stuff”, like my lunch box collection, that there just isn’t room for in the house).
The third part of the plan is to eek together enough money for a maid service to come in and do an overall cleaning a day or two before his inspection. Not only does this allow us to focus our limited time and spoons on organization, but if he claims that we fail muster again, we will have some form of proof that we made an effort to make the place cleaner.
This situation is hard for me in a lot of ways. I have some deep triggers around my living space being dirty, which I see as something different from cluttered. I’m not a fan of either, but clutter I give into because I just don’t have enough spoons to care. But Rave cleans both bathrooms once a week unless we’re away for the weekend, we both keep the kitchen counters wiped down and the dishes from getting out of control, and generally we keep surfaces clean because I have a large open wound and a propensity for infection. I am also really not okay with the landlord, who is basically a stranger, poking around in my bedroom. He had to have walked all the way through to look at my bathroom, which means he could also be masking a reaction to the rather large Death altar in there. (Our other altars can pass for curio collections, but the Death altar is pretty blatant.) There was also some…ahem…adult items out in plain view.
But this may be a blessing in disguise. As I wrote in my last essay, we love the layout of the AEU, and the neighborhood is nice and quiet, but neither of us is in love with Hagerstown. It would make my life a million times easier if we lived closer to Baltimore, but we nixed that due to Rave’s commute. Rave hates her job pretty hard, and it looks like the feeling may be somewhat mutual, as they’ve taken her off the floor and out her back in training. It’s also draconian about taking time off, even when it’s been for things like “my partner needs to go to the ER” or “I told you two months ago my partner was having surgery that day”. She really needs a job with a little (not much) more flexibility, and one where her coworkers are at least more polite about not liking her and purposefully excluding her.
So if the landlord decides to be a dick and evict us, it would just give us more reason to take a closer look at Baltimore, and possibly in getting Rave a better job in the bargain. We’re not happy about the possibility of moving again so soon, but if our landlord is going to threaten to evict us over a little clutter, it’s best we learn this now and not, say, when we can’t do anything about it.
So that was my no good, very bad day. Tomorrow, I get to jaunt off to Pagan camp and see most of my Bear family. Of course, my STBX and his new poly family are there too, but these days, that’s the least of my concerns.
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When I think of home
I think of a place where there’s love overflowing
I wish I was home
I wish I was back there with the things I been knowing
Wind that makes the tall trees bend into leaning
Suddenly the snowflakes that fall have a meaning
Sprinklin’ the scene, makes it all clean
Maybe there’s a chance for me to go back there
Now that I have some direction
It would sure be nice to be back home
Where there’s love and affection
And just maybe I can convince time to slow up
Giving me enough time in my life to grow up
Time be my friend, let me start again
Suddenly my world has changed it’s face
But I still know where I’m going
I have had my mind spun around in space
And yet I’ve watched it growing
~”Home”, The Wiz
I’ve been spending a lot of time here in the Apartment at the End of the Universe, as my current health situation requires it. I’m still healing a wound from the inside out, in hopes that by doing so it will create scar tissue where I’ve been developing these abscesses. I’ve been attached to a machine called a Wound VAC, that basically sucks out the fluid from the wound, helping it heal faster and keeping any pockets from forming. I have a nurse who comes to my house three times a week to change the bandage and check the wound, and in order to receive that service I have to remain “homebound” – which has been explained to me as “a state in which leaving the home is very difficult or a major effort”. There’s the practical side of it – the nurse comes here three times a week, so I have to be here for those visits, and can’t make arrangements to get the same service somewhere else (which was the opposite of what I was told in the hospital, but whatever). As I didn’t know that the home nurse could be taken away if I am no longer considered “homebound”, I mentioned to her an upcoming weekend trip, and that’s when I learned that I can’t even discuss with her leaving the house on a regular basis for anything other than a family emergency or somesuch. So I’ve just been having a few “family emergencies” lately.
It is a hard thing for me to accept, this idea that I’ve been classified “housebound”. I mean, I am deeply grateful that the nurse comes here, rather than me having to make arrangements to be driven to the local wound care center three times a week. Right now, my only means of transportation during the “work day” is a woman I pay an hourly wage to drive me places, supported by a few incredibly awesome friends who drive long distances to take me to appointments when my driver cannot. I flat out could not afford to pay to go to the wound care center three times a week; they have a van they could pick me up in, but then I’d have to use either my walker or cane to get around as there would be no one to push my wheelchair around, and the layout of the center would mean a great deal of walking. Walking has become more and more difficult for me, as my legs have been both swollen and very painful to touch, much less walk on. There are days I use my walker just to get around my house, which isn’t very big.
I also have been adapting to living in Hagerstown, which is in western Maryland, not close to either where most of my friends live, or a major urban center. It’s about an hour and forty minutes to Baltimore, and two hours to DC. I don’t have any friends who live close enough or who have open enough schedules to get together to do anything fun; there’s not a whole lot going on in the general area that could be done between the time Rave gets home from work and we go to bed without a significant amount of driving. We really feel like the “…at the End of the Universe” part of our house’s name has turned out to be more true than even we originally thought. We can’t jaunt out to a Tuesday night BR class or a Frederick munch without significant planning. There’s not a whole lot for non-drinking weirdoes to do in Hagerstown outside of going out to eat, which we can’t really afford.
This happens to intersect with a lot of other pondering I’ve been doing about the concept of “home”. The last few weeks, since I’ve been trapped at home a lot (save for a couple of weekend events), I’ve been spending my solitude doing a lot of mental processing about the divorce. It sounds ridiculous, but even though I suspected something was amiss in our relationship for months before the shit hit the fan, I was completely unprepared for the reality of our separation. Added to that, I really expected how he and I would deal with our separation completely differently. He continually swore that he wanted to remain “friends”, that he would uphold his oath to be my “family”, but other than terse emails about logistics (mostly money), he refuses to talk to me at all. I’ve offered to meet him face to face, talk to him on the phone, or even trade emails, but he doesn’t even say “no”, he just refuses to respond. Any time a conversation turns from logistics to anything personal, he cuts off correspondence completely and/or only responds to the parts of the messages he wants to. I find it so ironic, because I would never have guessed that it would be me reaching out and trying to start the reconciliation conversations; I am pretty honest with people that I am very, very rarely (if ever) friendly with my exes. This is not the first time that my partner tells me that they want to be friends with their exes, but then when things end they actively ignore me and pretend I don’t exist unless they absolutely have to deal with it.
I was very hesitant to get married a second time. My first marriage was pretty much a huge disaster, where I suffered emotional and mental abuse, and the relationship-I-call-spousal-even-though-we-never-got-married wasn’t much different, although to be transparent I feel that relationship was bad for both of us in hindsight. I also constantly struggled with my ability to trust my STBX, knowing he had a history of cheating on his partner and not much relationship experience under his belt. But what happened to change my mind had nothing to do with love or romance (especially since neither of us are particularly romantic people). I really had begun to feel that he and I had created a family unit; my love for him was as much familial as it was erotic.
I have a complicated relationship with my birth family. I love my mother and my sister very much, and I talk to them on a semi-regular basis. But that’s about all I have in my corner – I never really met anyone from my father’s extended family, so I don’t have any relationships there, and my maternal family…well, “black sheep” doesn’t even begin to explain how they treat me. I mean, they try to be friendly when we’re forced to be at a family event together, but none of them call me or know anything about my day to day life at all. And this lack is something I have keenly felt for a long time – I have a whole composition notebook I filled with angsty prose and poetry back when I was 24 or so, most of which was directly about my lack of “home”.
One of the terrible things I had taken away from me when I went through my shamanic transition was that the town I grew up in, the only place that really had any nostalgic magic for me, I lost that connection with it. I used to go there from time to time and go to places I used to hang out at when I was a kid, and I would get a sense of deep love and belonging from the place. I could “fill my cup” of having a place that fed my need to have a place I knew intimately, a place where I could find my way around without a GPS or a map or Yelp or anything like that. Where I could speak to the land spirits without much difficulty, on a regular basis, and knew what kinds of offerings they liked and where to leave them. When I left NY for MD, it was like someone went back to my hometown and turned all the spirits away from me; I describe it as “tasting like ash”. It feels like it belongs to someone else, someone I used to know, but isn’t accessible anymore.
When I married Mike, we were also making a commitment to live in Maryland for at least 10 years. We had discussed it at length, considered buying a house and creating roots. Before then, we weren’t sure if we would go back to NY (since we were both natives there) or maybe hang out in MD for a few years, or what. No, we made the considered decision to created family-of-choice ties with our friends and lovers in Maryland. That’s why our wedding was less focused on us declaring love for each other, and much more focused on the concept of “creating a family”. For me, this was so incredibly important and emotionally satisfying, because it gave me something I had been looking for; a sense of “family”, and a sense of “home”.
This year, due to a lot of little and big reasons, I decided that I would start looking for new-to-me events to teach at, and maybe take a break from some events I have attended for many years. So far, it’s been pretty good; but tonight I’m dealing with an unexpected consequence of that decision. Due to the “housebound” stuff, as well as some other medical stuff going on, I am home on this night for the first time in at least seven years. This week is Free Spirit Gathering, a Pagan camping event in Northern Maryland that I have attended since 2003. This is one of those events that I don’t even contemplate when I make a year’s calendar; I just know I’m going to be there. The last few years, I’ve been the department head of their mobility and roving security department, as well as teaching a few classes. It was the first big event I attended after moving to Maryland. I know probably more than 50 people who attend the event, and most of them I consider to be friends, if not family-of-choice. I stay in the same cabin with my Leather family every year, and we all know which beds are for which people. It’s not even discussed or thought about, it just happens.
Over the past month, it became clearer and clearer that I couldn’t go, at least not for the week. I tried very, very hard to change that, because this depressive funk I’ve been stuck in would definitely benefit from being around my family of choice, being in a place/time that feels homey to me. I love the campground where this event takes place, and feel connected to it as many others do. And there is an energy that awakens the land during this particular event that I do not feel when I am there with other groups.
At the same time, many of the things that make the event feel homey were starting to fall apart. My partner Winter decided not to attend; this was the one event we attend together where we spend a lot of time just hanging around each other (rather than running from one thing to another). I understand why he decided not to go, but then we got into a very strange place in our relationship where we stopped talking. I’ve reached out to him and told him I would really like to talk, and, like the STBX, I just get silence. I decided that must mean he needs time to deal with this strangeness, so even though today is his birthday, I decided not to call even though I very, very much wanted to. I feel the lack of our connection deeply; not just the lack of communication, but like I do not matter to the Clan we both belong to – another family I have tried to make my own. I feel like decisions are made without even thinking to let me know, much less asking for my input. I don’t understand where I stand in the structure, so I have decided not to push the issue and just let things happen as they do. But I can’t say I’m happy about it.
My Bear Family, another family-of-choice I love dearly, has also declared that this year is the last that they’ll attend FSG. I completely understand this decision, as the FSG community has been very negative (and at times, downright nasty) to some of us, and it’s just best that we leave places where it’s clear we’re not wanted. However, there isn’t another event that we all attend en masse. In fact, we haven’t all been in the same place since the STBX left us. I don’t know what the future of our family will hold, as we used to have a clearer vision as to who we were and what we wanted to do, but we don’t spend enough social time together to talk about it or actually make anything happen. I’m hoping that maybe, if we mutually decide to skip FSG, that maybe we can all decide to go somewhere (an event or not) together once a year, if not more often, just so we can all hang out together.
So maybe you’re beginning to see why I feel so…divorced…from feeling like I’m at “home”. The place I live in is nice, I love this little house, but it feels so much like a “landing pad”. I don’t want to put down roots here, because I don’t like living so far away from any of my close friends or any semblance of a social life. I’ve been openly thinking about moving to Massachusetts, but I don’t know how I’m going to afford that, or deal with many of the issues that I’d have to settle before I could do that. I’d have to find a completely new medical support system. Granted, I do have a group of friends who live within a two hour radius of each other, so at the very least I wouldn’t feel quite so solitary in the sticks.
I remind myself that this is supposed to be a year of contemplation, and living in a place that feels temporary does contribute to that, as well as being forced to stay home more often. I’m just having a terrible time keeping “contemplation” from becoming “rumination”, where I start to think about all the things that have gone wrong in my life in the past two years and how I ended up where I am now. A lot of my current situation was not by choice at all – I did not choose to move to Hagerstown, it just sorta happened. I did not choose for my STBX to completely cut me out of my life. I did not choose to develop new illnesses that make leaving the house even more difficult than it was before. I did not choose to have my financial situation tank quite this badly. I don’t want to sound like I was just standing there while all these things happened to me, as though I had no control at all; I know that’s not true, but that’s another contemplation/rumination issue again.
So here’s the question, then: Am I meant to have a family? Or is this something I am too much of a monster/non-human to ever achieve? Is anywhere ever going to be “home”? Am I ever going to look at a mountain, a river, an open sky, a horizon and know that this particular place sings to me like no other? Am I ever going to collapse into a bed and really feel 100% comfortable to be myself in that space? What do I need to do to make these things happen? Is it worth it, if I think I don’t have much time left?
I have this (pretty standard) desire to die “at home”. I absolutely do not want to die in a hospital. I want to be somewhere I feel totally comfortable, where I feel loved by both the people and the vaettir of the place, where I can release my attachments in the safe knowledge that the love I feel will go with me to the other side. And what I’ve realized this past month, is that I don’t know where this place is, or who will eventually end up being in that circle. It’s tempting to look at the people I hold close right now and know they’ll be there, but if you asked me eight months ago, I would have given you a much, much different answer than I would today. Nothing is permanent, everything is possible. I’m starting to wonder if I should just embrace the idea of dying alone, so I don’t have to worry about all the drama and heartache that goes into finding these things. I’m so tired of it. I’ve put so much work into making so many families, only to have to leave them in ruins, or be asked to leave as they outgrow me, or find out they never took it as seriously as I did, or whatever. Maybe this is why when I reach out to my ancestral line, I get crickets. I belong to no family, I have no line, I have no home.
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A follow up to the other entry I reblogged, a list of suggestions of things that people with the chronic pain actually want to hear.
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A follow up to the other entry I reblogged, a list of suggestions of things that people with the chronic pain actually want to hear.
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It’s been a difficult time. This past trip to Johns Hopkins has left me running on very low energy. There’s been a lot of sleeping, a lot of powering down, a lot of what I call “spoon banking”, times where I purposefully go into low energy mode because I have a lot of high energy commitments coming up, and I want to feel as good as I can when they happen. I’m looking at one of them this weekend, going to an event I’m kinda nervous about for a lot of reasons.
It’s been hard. The wound VAC experience hasn’t been as wonderful as no one told me it would. Basically, to be a little graphic, three times a week a nurse comes to my house to rip out foam that’s been stuck inside my wound, under negative pressure, which has partially adhesed to the wound. It hurts, each and every time, and it was only my mentioning that they used lidocaine when I was in the hospital that the nurse even thought of it.
I’ve started many blog posts, both for here and my other blog, but none of them have grown into anything worth posting. I usually only have a few paragraphs in me before I start to fade, or when all the drugs I’m on kick in and I get all fuzzy and it becomes very hard to focus. I know that people are interested in what’s been going on, have been waiting to hear how I’m feeling and how I’m recovering, but I don’t know how to make a meaningful post out of ‘Ow, sleepy, more ow, more sleepy.”
But even when I’m not actively blogging on a regular basis, I still do check in with WordPress. I read some of the other blogs I subscribe to. If I feel like I need a kick in the pants, sometimes I took at my stats. Mostly I just look at the numbers as they slowly decrease – and that makes sense, as less people read my blog when I’m not writing anything – but I also enjoy reading the search terms, the phrases that people put into search engines that lead them to my blog. Most of the time I find them either educational (I may actually write more about my experiences about both panniculectomies and hernia repairs, as many people come here looking for information about them), or humorous. My most favorite of all time is “If I eat a crow, will I get sick?”, which I assume lead the person to my post about going gluten free.
This week, however, I had a search term that made me ponder. I read it, and it made me think. It said, very simply, “Is Del Tashlin lying?” (I added the capitalization to my name.)
I am not as surprised as you might think I am. I have detractors, and I’ve written about them before. I’ve always been the kind of person that people either really like or really hate; very few people meet me and think, “eh, whatever”. I never delude myself into thinking that there aren’t people out there who have had extremely bad experiences at my hands, or reading my words, or being a part of my life. I know I’ve hurt people, I’ve alienated them, I’ve done or said something that made them think I’m a terrible person.
I honestly believe that’s true of just about anyone. In fact, sometimes it’s easier to find people who think a specific person is a terrible, awful human being, than it is to find someone to stand up for them and speak to their strengths.
When I first met the now STBX, I asked around about him. I didn’t know him very well, and we didn’t have any friends in common, so I was hoping to find someone I could trust who would calm my fears about dating someone so far outside of my social circle. And as the story goes, he had a few friends who I knew tangentially through others (gamer geek circles tend to overlap) who told me he was a stand-up fellow, and I decided to date him. He even admitted to me on our first real “date” that he had cheated on his first wife. I took that to mean that he was willing to be honest with me about both his strengths and his weaknesses, and that was attractive to me. I admire someone who is willing to offer up a full picture of who they are when you’re starting to get to know them. Usually, we’re too busy trying to put our best foot forward, to look as attractive as we can, in hopes of roping the suckers in. It meant a lot to me that he was so honest. It gave me hope.
And before we jump to the end of the story, there was definitely a middle. There was struggles and successes. I refuse to lock all of my good and uplifting memories of our relationship into a box and only focus on how things ended. I am doing everything within my power to continue to see him as I did in the beginning; someone who is neither all-bad or all-good, but a complicated person with as many successes as failures in his life.
In that vein, I’ve asked my lovers, family, and others close to me to keep their thoughts and feelings about the separation to themselves. I have asked them to be civil with him and his new family when they find themselves in social situations with them. Even though many of them are as hurt as I am, feel personally betrayed by the whole situation, because they bought into much of what they saw and felt about him as being not just a good partner for me, but a good person in general. But I think part of what makes that complicated, is that we all try hard to see our friends and family-of-choice as being generally good people. We try to downplay the parts of them that we don’t agree with, or aren’t as pretty or good or civil. How many times have you been in a relationship where you’ve done something to hide your partner’s lesser qualities? I think we’ve all been there, whether it was me explaining away the rampant anti-social behavior of my first husband, making excuses for the anti-semitism of another lover, the untreated alcoholism of yet someone else, etc. I don’t claim to be perfect, and I don’t date perfect people either.
In fact, when I fall in love with someone, I try as best I can to fall in love with their weaknesses, their imperfections, the things that most people would see as negative. I don’t go rooting around looking for them – I know they’ll show their face in good time – but when they become apparent, I open my heart even harder and tell myself that if I’m really in love with this person, I’m in love with all of them – even the parts that embarrass me, or that aren’t socially acceptable, or the parts they hate the most.
Sometimes this can be healing: I’ve loved many people’s bodies when the owner of that body couldn’t. I’ve loved people’s fight with their sexual orientation or gender identity. I’ve loved them as they made choices that would turn out to be bad for them, or bad for both of us. I strive to love beyond just the good parts, the hidden parts; to me, that’s the ground where real intimacy lies. When you can look into someone’s inner monsters and tell them they are loved.
How does any of this have to do with whether or not I’m a liar?
I used to be a really big liar. Growing up, lying was like breathing. I remember telling kids in the new school I found myself in, 4th grade, that I had a metal implant in my leg. Whenever I felt ignored or left out of something, I would go to one of them I had spun this tale to, and would say something like, “My ‘ML’ hurts!” and they would immediately leave whatever they were doing to spend time with me.
I find that story funny now, for somewhat obvious reasons. Now a days, I am terrified to talk about the depth and breadth of my disability, specifically for many of the reasons that I lied about it when I was 11. I don’t want people to be my friend out of pity. I don’t want people to stay away from me because my chronic illness makes being my friend/lover more difficult. I don’t want to shake the “I’m in the hospital” banner too often, lest it start to feel like a child crying “wolf”, and not being able to rally support when I really need it.
I also had to face a big challenge from Loki during my shamanic crisis. One of the things He demanded from me was that I never lie. I can bend the truth, I can embellish for storytelling purposes, I can avoid talking about something or omit details: some people see these things as equitable to outright lying. And maybe it is. But the promise I made was that I would never say something that was out-and-out untrue.
I am not perfect. When I am upset, especially when I am in an argument, I am apt to say whatever comes to mind in the moment, including things that are said merely to wound the person hearing them. Frequently, these things are untrue. In the moment, I find it extremely difficult to hold back from doing that; my passion takes over and my desire to hurt the person who is hurting me takes over. I hate it, it’s a part of me that I see as imperfect, a part of me I would hide from people if I could.
I sometimes know what I have to say in order to get a certain response. People who see me in the hospital sometimes comment that maybe the reason I run into problems with pain management is because I can look at a doctor and calmly tell them I’m in 9 out of 10 pain. I’m not crying, or rocking back and forth, or breaking down. I can be emotional about some things, but pain is no longer one of them. I deal with pain so often, almost always, that it is totally possible for me to truly be in excruciating pain and still have a calm demeanor. With these new bandage changes, I would be completely wrecked every other day if I let the pain take me to such an emotionally rendered place. I need to stay stoic so I can get up, go on living my life. If I let all the pain I feel all the time control my emotional state, I would very likely never get anything done ever, and would spend every single day in bed falling apart.
That’s part of what has made the last two weeks especially difficult for me. I’m not far from that. The bandage changes are Monday/Wednesday/Friday, first thing in the morning, and I find that at least for now, those days are basically “survival” days. I’m happy if I do more than just watch streaming video and use the bathroom those days – feeding myself is a victory. This weekend will be a test, to see if I can heal enough from Friday’s change that by Saturday, I can have a little fun and teach some classes. I’m totally up for the challenge, and I have to be: sometimes wound VAC treatments can last more than three or four months, and I have a very deep, very big wound. On the brighter side, I am showing some small signs of healing already, but it’s not going to be a short journey. I will be working in and through this for a long time, and I know that I am going to have to start making those days more productive if I’m going to get through this mentally.
I understand that I could choose to take more time off, to decide that this isn’t going to get any better and just close myself down until the wound is better. The problem is? I just did that, from August to February. I don’t want to do that anymore. I have a strong emotional and mental need to get out of the house, to get back to a semblance of a normal life, or as much of one as I can handle. I know I can’t be a superhero all the time, and that I will have to make choices all along the way to remind myself that I’m still not “well”, whatever that means these days. But I refuse to just sit in my house and feel sorry for myself and my pain for a year or longer. Seven months was enough.
I also accept that this is the new normal. I know a lot of people use the idea that “someday things will get better” as a way to keep their spirits up and hope alive. I have learned, through the last year’s experiences, that saying that to myself is lying. I struggled in my marriage to remind my spouse that there was no magical day coming when I would no longer have chronic pain/illness/disability, that there was no magic doctor out there waiting to give me a magic diagnosis that was going to fix everything. To me, where I am in the process, that sounds about as realistic as winning the lottery and marrying royalty and living in luxury for the rest of my life. I know that’s not my road, I know it in my bones, and I refuse to let anyone around me live in that illusion, so I have to start with myself.
I have to accept each moment as it is, not as I hope it could be, or how it might be someday. I have to accept that even if the wound VAC does what it’s supposed to and keep me from getting any more abscesses, it doesn’t mean that I won’t still have chronic pain, worsening diabetes, diminishing mobility, etc.
When I was in the hospital this last time, someone I’ve been kinda sorta flirting with came to see me. That was a big deal to me, because I still struggle with being completely open with potential lovers about the reality of my health situation. My STBX really made me gunshy about that; I don’t want to feel like I’ve sold someone a bad bill of goods by convincing them I am more healthy/painfree than I reall am, but at the same time, I don’t want them to think that every single day of being in a relationship with me will be about doctors and hospitals and medical devices. It was hard for me to have my crush there, but it was also important. I needed to know that they understood that this is an integral part of my reality now; that for me, being in the hospital is a somewhat “normal” event, rather than the earmark of an emergency. I needed them to see what it’s like to wait for days as doctors try to figure out what they’re going to do, which is very unlike the image we get from television that doctors are obsessed with just your case and is putting all of their resources towards you until they have an answer. There’s a lot of hurry up and wait in the world of dating someone with a chronic illness.
It’s hard, because in some ways it’s like leading the conversation with your inner monsters. You don’t get the option of hiding it, or waiting until something happens to reveal what makes you less than perfect. From the moment you spend more than a few minutes with me, my imperfection is brutally honest with you. It’s there, in a way I can’t lie about.
Am I lying? Man, I wish I were. I wish I had the luxury of making all this shit up, when in actuality I’m in great health and having a wonderful time day to day. I wish my life was full of all the things I wish I could have, the things I expected I would be doing at this age. I wish I could go out tonight to a bar, have a few drinks, hang out with my friends, and go dancing. I wish I could create a world where this wasn’t my day to day existence, believe me.
But I will always have detractors. I will always have people, for whatever reason, who feel the need to either highlight the honest imperfections I have (which I don’t mind so much), or make up shit to make me look bad (I mind a bit more). But in the end, the only weapon I have to win something like that is to keep on keepin’ on, living my life as honestly as I can, and prove them wrong by just being as open and honest as I can.
So in case you Googled “Is Del Tashlin lying?”, the answer is yes. Every day, Del Tashlin is downplaying how much pain he is in. He is pretending to be totally okay with all of his chronic health problems, and that his disability never depresses him or makes him angry. He lies to himself, all the time. But to you? That’s up to you to decide. Google won’t know the answer.
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I know that when faced with a loved one with chronic pain and/or illness, it can be difficult to know what the right thing to say is. Many people say hurtful things not because they wish to be hurtful, but because they (thankfully) do not understand the experience of living with constant, unrelenting pain and suffering. They may even believe some of these things- that we suffer because we haven't tried enough, or applied ourselves enough to find succor, or that suffering can be a divine experience. And even if these things are *true*, hearing them over and over doesn't make them helpful or reassuring. I look forwardto the next installment, which gives people ideas on what they *can* say to be supportive.
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12 days after being admitted through the ER and the decision has finally been made: I am having surgery tomorrow.
In a way I guess it’s a good thing we waited, as I have a very clear understanding that we have tried every other option before jumping to surgery, and in fact the lead team on my case, Plastics, has been dragging their feet for several days after the other teams (Infectious Disease, General Surgery, Acute Pain Management, etc) all decided that surgery was the best option left.
Yesterday was the final straw. As I’ve written before, they have put several drains into my abscess in hopes it would deflate on its own, and for the 11 days I’ve been here we haven’t seen any fluid come out at all. Interventional Radiology, the team that deals with the drains directly, informed my surgeon that the fluid inside of my collection(s) was too thick to drain this way, but my surgeon was stubborn and wanted to try one last time before he gave up for good. They poked a new, wider hole into the collection and then even went so far as to attach it to suction, and still nothing came out.
The surgery is not exactly the same as the one in December in a couple of ways. The December surgery did entail removing an infected abscess but there was a lot more infected tissue that wasn’t incorporated into a collection, enough to require a panniculectomy. When they finished the surgery, they removed some excess skin and pulled my belly up, making it much smaller (technically, a “tummy tuck”), and I had a very large surgical scar that went from one hip to the other. I also had two small grenade-shaped drains (JP drains) that helped suck out excess fluid produced from the surgery.
This time, they will be removing an infected abscess, but the focus is on trying to keep this from happening over and over again. They’re going to re-open a small portion of the scar from December (about a third, or 9-15cm) over the collection, remove the abscess and all the other bad stuff around there, including physically washing the space out. Then, instead of sewing or suturing up the wound (which will be “the size and shape of a small loaf of bread”) like you’d expect, they’re going to “pack” the hole with a special kind of vacuum-bandage. The idea is that if they just sew the hole closed, the hole will sit there empty, and nature abhors an empty space. By packing the wound, it is forced to heal from the inside out, and the scar tissue created will keep it from reforming a new and/or different abscess in the future. By using the motorized system, any fluid that is created from the wound or left behind by the surgeons during the operation will be sucked out in a more efficient method than the drains we used last time. (I have a bad history of having drains “fall out” before they’re done doing their job, no matter how many precautions are used to keep that from happening, and that could very well be contributing to the problem.)
I will likely be in JH for another week or so in recovery, and then sent home with a home-care-nurse visiting three times a week. They’re telling me I should be able to work (including teach classes and stuff), so I haven’t cancelled any of my upcoming gigs. I will have at least one, maybe two, small motors I will have to port around with me, but I’m inventive and will figure out some fashionable way to do it and not look bad.
I haven’t had much more time to ruminate on the spiritual meaning of all of this beyond what I’ve already posted. I’m trying very hard to see this situation as not being all about me, but at the same time not allowing others to use me/my medical situation against me in some way. It’s been difficult, especially lately, but I just keep holding my head high and be the man I want to be and let everything fall as it will.
I asked Alex if he could think of some witty vacuum joke or reference I could turn into the title of this entry, but joking about it would inaccurately convey my emotional state. I’m not depressed or amused; I’m pissed. I’m angry that it took 12 days for the doctors to do what they told me was going to happen 12 days ago. I’m angry that last time I was given all this lead time to prepare, and this time we have practically none. I had a very clear image as to what it all meant, why it was happening both physically and spiritually, and what I was supposed to get out of it. I understood it.
This time I have no idea. I have some guesses as to what it means, but they’re really just shots in the dark – and I’m also willing to accept that maybe it just doesn’t have a bigger meaning to it at all. I understood that the abscesses were something that happened because Dr WLS fucked up my ventral hernia repair that April, but this one doesn’t seem to be directly related to that, either. Last time I was able to garner support not just because of the health crisis, but because it coincided with my husband ending our marriage. Instead, this time, it all just feels like it’s landed on my lap and I have no idea why, or what I’m supposed to learn, or why this would have any meaning at all, other than to make me miserable and in pain and reinforce my fears that I can’t live a normal life ever again.
It reinforces a lot of the fears I was able to squelch last time, stuff about my divorce and my living situation and trying to figure out who really cares about me and who doesn’t. It makes me look really hard at the prediction I received three years ago, that said in year three the game would change dramatically. As my STBX basically disallowed me to talk about the prediction at all, I learned how to put it out of my mind, but these days it is feeling more and more relevant and yet harder to accept as being real. It’s dredging up a lot of inner stuff I was able to bury and/or hide for a long time and making it impossible to ignore. It’s forcing me to really and truly think about the word family, what it means, what the qualifications are, and what to do when someone who used to be an important member of your family makes it clear that they don’t feel the same way anymore. I am thinking about what honesty is, and where honesty is important, and yet where honesty can be hurtful and/or cruel at the same time. I’m thinking about a lot of things.
But at least now you all know that the surgery is for real, it’s happening tomorrow at some point, and you’ll all know one or another that I got out of it safely (or not). I will be spending some time this afternoon updating my will and advanced directives to make sure they reflect my most current realities.
Please feel free to pray for me, to ask your Gods (and mine as well) to look out for me, to guide me through this process, and to bless the doctors with clear heads and deft hands. Please do not send energy or Reiki of any kind; although I do have an anti-Reiki amulet to wear, it just makes things easier if you don’t send it for starters.
Love you all, and see you on the other side.
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I am having another surgery. We’re not sure exactly when, but it will be before the week is out; my best guess right now is either Tuesday or Wednesday. The surgery will be very similar, but not identical, to the surgery I had in December: they need to open my abdomen, remove an infected abscess that has now grown to the size of “a large grapefruit”. The various departments that have been working with me since I got admitted last Thursday have being doing all they can to try to avoid this surgery for many reasons.
Firstly, every abdominal surgery I have, weakens the abdominal wall and makes me even more prone to hernias and other serious re-occuring medical problems. As these abscesses are happening as a reaction to other abdominal surgeries, in a fucked up way removing this abscess may cause more to form in the long run. These surgeries are stop-gap measures so as to avoid a much bigger, more invasive surgery; one in which they would have to remove a portion of my bowels. My plastics surgeon, Dr. Sacks, is still hoping that pumping me full of high dose antibiotic via the PICC line will soften the abscess and help it break down on its own, but he’s the only doctor still hanging on to that hope.
This surgery will be different because I won’t be having a panniculectomy this time. Instead, they’re going to cut a smaller incision, but a larger hole. (Dr. Awesome described it as being about the size of a loaf of Wonder bread.) They will remove the abscess and any infected tissue that surrounds it, but they won’t close the wound when they’re finished. If they did that, they’d be leaving a perfect place for a new abscess to form. Think of it this way: instead of just evicting the tenants, we’re burning the house down.
So what’s going to happen is they will leave the wound open, but pack the empty space with a special kind of bandage that will help keep fluid from building up. I will likely have to carry around some sort of knapsack or fanny pack that has the motors in it, but I will be able to leave the house and go do stuff as soon as I feel able. This being said, I’m currently not planning on canceling any of my upcoming gigs except for the BR class (since I’ll likely be having surgery that day.)
Here’s a cute little tidbit: Either because I mention it in passing, or something triggers it, my doctors are finding out that I have nicknames for them. They mostly know about Dr. Awesome. The resident that I see weekday mornings complained, so he’s Dr. Fabulous. When I saw the guy who is working this weekend for Dr. Sacks’ service, I flat out asked him what he wanted to be called, and he decided on the Grey’s Anatomy moniker Dr.McSteamy – but I dunno, he looks more like Patrick Dempsy than Eric Dane.
This is McDreamy, Patrick Dempsey And this is McSteamy, Eric Dane.
I’ve been doing some serious thinking about this whole thing from a spiritual perspective, as well. I’ve talked it over with my pastoral care counselor, my Clan’s shaman, and other important spiritual folk in my life. At first, I was really angry at Hel, but I’ve come to peace with that now.
The first thing I have come to sit with, and to dwell within, is the shattered illusion that just because I made it through December’s ordeal doesn’t mean that I am never going to be sick, or in the hospital, or need months of bed rest. I had somehow convinced myself that if I just healed from that surgery, everything else was going to be smooth sailing from there on out. The arrival of the madness quilt, as well as the writing I’ve been doing for the book, let me sink into this soft comfort zone of not having to deal with all this death and dying stuff.
I had forgotten that way before I accepted this deal with Hel, I had agreed to be the Dying Man for Baphomet. Part of that Job is to explore the spirituality of dying and of death, so as to bring peace to others. In an odd way, the December ordeal was a formalized first step in that process, a “put up or shut up” moment if you will. I had talked about being the Dying Man, but honestly I hadn’t really thought about the nitty gritty of the death processes. Once I knew I had to face the surgery in December as some fashion of death, especially not knowing if that fashion was going to be literal/physical, I started doing a great deal of reading and research about the physical act of dying. I looked at pictures of dead bodies for the first time, real dead bodies and not just live models made up to look dead. I watched documentaries about how we treat our dead, the funereal processes and ancestor veneration. I read a ton of Near Death Experiences, and attempted to have my own through meditation (and meditation alone, I promise you.) Even after I woke up on the other side of the ordeal, I wrote a lot in my private journal about how the death process feels and what it’s like to be newly dead.
All of this, though, lived inside my own head. I still haven’t said very much about what happened to me, or what it meant, or how it changed the way I saw my own life and the lives of those closest to me. I’m not sold that it’s meant for public consumption, and by no means am I trying to say that I will continue to get abscesses until I poop out some incredibly spiritual insight on the means and manner of death and dying.
I do feel, though, that it’s important for me and for those who allow me space inside their head (by reading this blog or being my friend or anything in between) to cherish their lives. Each and every spoonful of energy is important, and what you do with it matters. This doesn’t mean you should never rest, running around trying to make every moment the best possible moment to the detriment of your soul and body; but it does mean that you can celebrate the fact you’re alive as often as you need to. You don’t need – nor should you really want – constant reminders that this life could end at any moment and therefore you should launch into everything that scares you or gives you pause. But even in the scant few months I’ve been back among the living, I have already fallen into the old pattern of allowing circumstances to overwhelm me. I spent more time feeling stressed and emotionally wrought because the effect of making choices that put my desires and needs before those of others keeps holding me back. I even got a message from a God telling me that if all those pulling me in a thousand directions didn’t stop, Hel would revoke Her permissions around having human relationships.
I let it get that bad, and it got that bad fast. It wasn’t anyone’s fault but mine, and I own that. The reason this abscess got as advanced as it did is because I put off going to the doctor. I saw the swelling and had a strong guess as to what it meant, but I was so intent and focused on the idea that I was moving on from all of that medical stuff and focusing on my Work I ignored it for far too long. And what really sucks is that I didn’t even accomplish what I really wanted to do with my time instead of seeking medical care; I spent the majority of it feeding the needs of others. This surgery is, in my own mind if not in reality, a direct consequence of not putting my own needs in front of the needs of others. Of not creating and enforcing my own boundaries around my time and energy. I like to think that it’s also the reaction from other people not respecting my feeble attempts at boundaries, but blaming others isn’t going to get me anywhere, and it’s not them that are going to be walking around with a giant vacu-wound on their bellies for a month.
As your friendly neighborhood Dying Man, I will share with you that the hard lesson I’m still working on. I have a life – my own life – and it is absolutely necessary for survival that a good portion of that life belong to me and me alone. This sounds very elementary, but for those of us that spend so much time helping and serving others it can be the hardest lesson to learn. It’s very easy to put your own needs aside, to internally compare the needs of someone else to your own and always decide that the other is more important. Even more personally, I need to remember that my soul needs the body to express itself, and because taking care of my body is so much more boring than taking care of the soul.
Another big issue is that it’s hard to start building relationship and life skills when you’re surrounded by those who expect you to have a doctorate degree. It’s a two way street in some ways – I can muster all my strength to build and maintain boundaries, but because I’m still learning what it takes to make them it’s too easy for others to steamroll over them without a thought (or better yet, stand around and say, “Aww, look, Del made a teeny weeny boun-da-wee. How adorable!”).
In order for me to survive and thrive in the life Hel has granted me, using the skills Loki imbued in me, reacting to the hot pokers Baphomet has fucked me with, I need to take more time for myself at all costs. I need to stop wasting time worrying about things that don’t directly relate to the work (and Work) in front of me. This also means that when other people try to lead me down paths unrelated, I need to be more brutal and straightforward about distraction and what distractions support and uplift me and which ones make me depressed and unmotivated.
I will write more about the impending surgery once Dr. Sacks actually decides it’s going to happen. For now, prayer for discernment and clarity of communication would be the most helpful – and NO REIKI PLEASE.
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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.
SMIB.
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If you just want the short version, you can skim/scroll down to the “Here is the TL:DR Bookmark”, and start there. You’re welcome.
As you all know, I had a panniculectomy in late December, from which I healed much faster than expected. The surgeon had predicted a much more dire situation, but in the end other than a little breathing issues on the table everything seemed to be going fine. By February, the surgeon was ready to start scheduling my follow-up appointments six weeks apart; we had agreed before the surgery that we would be following up for at least a year if not longer, because there was a really high chance of post-op complications. Six weeks was the maximum time between follow up appointments, so that’s how well I was doing only two months after the knife.
In the middle of March, I noticed that there was some very slight swelling around the right-of-center part of my abdomen, around part of the surgical scar. The doctor has warned me that there might be odd swelling up to a year afterward, so at first I dismissed it. Also, I had just spend two and a half months “healing from surgery”, so I wasn’t keen to go running back to the doctor right away; I wanted to spend that time and energy getting back into the swing of things post-separation, booking some gigs and finishing the book. Every week I’d say to myself or Rave, “I should call Dr Sacks about this swelling in my belly; it looks a little worse.” And then I’d get distracted doing other stuff and wouldn’t. I kept assuring myself I had the six-week checkup already planned and if nothing else, I’d be seeing him then.
Six weeks finally passed, and I went to see him for the appointment. As soon as he walked in the room, my guilt jumped out at him and said, “Don’t be mad at me; there’s been some swelling. I kept thinking I should call you, but I was busy with other stuff and was afraid I’d have to go on hiatus again to deal with it.” He laughed; he reminded me that this is my body, not his, and if I want to ignore something I had the right to do so. He’d eat those words a few weeks later.
This is an interesting thought, and something worth going on a bit of a tangent on, if you’ll indulge me. (Again, if you want to skip ahead to the part where I get to the point, feel free.) Between having friends who deeply care and sometimes feel invested in my well-being, and being a blogger who shares their medical journey with the general Internet public, it can sometimes be overlooked that we’re talking about my body, and that everyone has made decisions that did not put their body or their health at the top of the priority list. Whether it’s extreme sports or eating a triple bacon cheeseburger with hamburger patties for buns, we accept that sometimes the experience is worth the risk. But when one is both public and chronically ill, people tend to want to bundle us in soft cotton and keep us from any extra suffering. It’s actually something I’ve read quite a bit about when reading disability advocacy and activism papers; that part of fighting for body autonomy is fighting for the right to do unhealthy or risky things with one’s body regardless of one’s state of health/ability when they make that decision.
In writing this blog for over a year, I frequently get emails, comments, or find myself in conversations, in which people basically inform me that they know more about how to treat my body than I do. That’s not what they say, but it’s what they mean. When someone sees me eating something delicious, but not the most healthy (or these days, merely something I’ve previously stated is a food or drink I am avoiding) they feel they not only have automatic permission to point this out to me, but in some cases, they physically take the food away or publicly shame me for making that choice.
During this hospital stay, people have been bringing me slushies from Sonic, which is a total Del comfort food. They’re basically fruit, simple syrup, and frozen water (and I get the ones that Sonic claims are made from “real fruit”, rather than just a flavored syrup), but it doesn’t take a food scientist to know that they’re full of simple sugars. My blood sugar numbers have been pretty shitty lately, and most of that is due to stress/pain. However, I’ve noticed a behavior among the nurses here that I really wish the rest of the world would take a cue from: they don’t care. When I get “caught” – when a nurse comes in to take my blood sugar only to see a half-empty Sonic slushy on my table next to my laptop – the nurse doesn’t actually say or do anything at all. It’s me, responding to years of programmed fat-and-sugar-shaming, that immediately jumps and says, “You caught me. I was having a slushy.” And it is Pavlovian, this response, because my experience from the last few days has shown me that the nurses don’t give a damn. It’s the people visiting me who make the judgement statements or even just a joke about how terrible it is that I’m drinking this thing.
It’s as if disabled/chronically ill bodies no longer belong to the person using them. We are community property, open to scrutiny and judgement by anybody, but most often by people who think they know better. However, I will assert that when a person feels entitled to judge another based solely on what they see/hear/know in the moment, or solely on what that person shares on the Internet, frequently their judgements say more about them than they do about us. Someone may attempt to shame me for my choices, as some sort of dodge or deflection about their unhealthy choices.
There’s more I want to say about this, but this tangent is getting really long and you’re more interested in what’s going to happen next in my hospital story, so remind me to come back to this sometime.
He didn’t think the swelling was anything particularly surprising or negative, but he sent me to get a CT scan right away to see if it was a new fluid collection or abscess. It turned out I had a much smaller (9mm) fluid collection, but that it was not infected. I got another drain installed via Interventional Radiology (IR), but there was (oddly) very little fluid coming out. What did come out was serrous fluid, or basically white blood cells. I only had the drain in for a week and a bit, as it mysteriously fell out of it’s own accord on that Sunday when I was at Charm City Fetish Fair.
The day before that happened, Saturday April 6th, was a very bad day. Even though I knew I needed to be up very early (for Dels) in order to go to Charm City and register, I could not for the life of me get any sleep the night before, mostly because I felt pain and nausea. It was bad, really bad. Probably the worst chronic illness day I’ve had in the last two years. We got to the hotel and I went right to sleep, woke up, did my class/panel, went right back to sleep, woke up for my volunteer shift, and then sleep. I couldn’t really eat or even drink fluids because I was so sick to my stomach. I emailed my surgeon and his PA to tell them how bad I was feeling and asking for their advice. Dr Sacks felt it was no big deal and to be expected, whereas his assistant thought going to the ER there and then was the better choice. As I was not feeling inclined to go to the hospital, and Dr. Sacks was assuring me it didn’t have anything to do with my abdomen, I decided to stay at the event.
As part of my earlier tangent, I wanted to add another point here. Again, feel free to skip this part.
Another way in which people outside of my immediate circle judge me and my choices is when they criticize me for leaving the house. I have lost count of how many times someone has suggested that if I only stayed home more often, or rested more, or did less work, or some other way confined my life to my bedroom, I would miraculously feel better and/or have taken better care of my body. They also feel entitled to make those comments because I openly write about financial struggles and have received donations from people in the past to help cover medical costs; and yet, I also write about going to parties or events or in some other way spending money on a social life that, in their opinion, would be better spent on medical costs.
I can’t stress enough how backwards this is. If I never go out and never do fun things, then my entire life becomes restricted to “being sick”. The only people I know – and I do know them – who want their lives to completely revolve around being ill/having medical emergencies, are mentally unstable. They thrive off of the attention people who suffer are given, and they are immediately jealous if someone else gets one iota of attention because that other person is also suffering. It’s as if there is nothing redeeming about them, nothing worth paying attention to or engaging with them over, except their illness.
I, and I like to think saner people, fight that perception with every bone in our body. I begged Baphomet to allow me a second blog specifically because my online presence had become completely focused on me being sick, and it’s not the only, or even most important part of my identity. But in order to do that, writing about my adventures is not enough; I actually have to go have them. Now, this doesn’t mean that I spend the grocery money (or the prescription money) on sex toys and roller coasters, but it does mean that – gasp – I choose to cut back on one thing in order to have fun, and also that – gasp – I frequently go out and do fun things when I “should” be home resting. Anyone who tries to shame me for leaving my house twice this month, putting off seeing the doc by a week or two, doesn’t understand or support the concept of people living full, complete, joyous lives. And that’s just sad, because it means that their life is so boring, so empty, that their idea of fun is to criticize and ridicule some random person on the Internet for doing something fun.
Sunday morning came, and our plan was to get dressed, eat some breakfast, take a look at the vendor mart, and go home. A friend of mine was in charge of vendors and was telling me that no one was buying stuff and the vendors were feeling kinda desperate. As I was getting dressed, I turned at one point and realized my drain was on the bed, and it was too far away from me to still be attached. Sure enough, upon closer inspection, I could clearly see the end of the tube that goes inside of the abscess lying on the bed like it was just another piece of my outfit. I emailed Dr Sacks and his PA again, and this time they both stressed that I should only go to the ER if I felt I had to, because there was really nothing the ER could do to assist me. I bandaged up the wound and left the hotel for home, spending most of the next two days asleep.
I was looking something up online about Isoniazid, my TB drug, when I remembered about liver-toxicity, which is a well known and documented side effect that hits those who get ill a lot. I brought up a page on the med and lo and behold, there’s a list of all of my current symptoms under the heading, “Seek out medical attention immediately if you experience…”
I had been waffling about calling a new PCP or going to see the old one. My PCP is no spring chicken, but at least I’ve been with him for long enough that I feel like he knows what’s going on and how to look at the bigger picture. However, I couldn’t get in to see him specifically, but another doctor in his practice. My ride shows up to take me to the appointment, and even she suggests we skip it and go directly to the ER instead. At this point, however, I’ve created this narrative in my head that says “If you go to the ER, it will be an emergency. If you go to the doctor, it will be no big deal.” I even reaffirm my decision when we reach the point in the journey where we could still peel off and go straight to the ER.
Well, we know how that played out. The PCP listened to what I had to say, and immediately knew she was out of her depth and I should go to, not just the ER in general, but the ER at Johns Hopkins, since I’ve been working with them and my files are all integrated. So my patient driver and I hop back in the car and reverse our trip to JHER.
It is quickly realized that I do not have a liver problem, but whatever is ailing me is fucking serious. I get admitted fairly quickly, even though it takes hours upon hours to get a bed. I start to feel much more ill as they park me in a tiny waiting room (which they now swear is a “staging area”) for two hours with no supervision, no one checking in to see how I’m doing, and a gaggle of very angry sick people who have also be relegated to this purgatory. Finally, Rave and I make enough of a stink combined that they move me back into the ER proper but we have to continue waiting for a “real bed”.
We learn that the new fluid collection has grown larger. It now has a “skin”, a membrane that holds it all together, which makes it really difficult to kill with antibiotics alone. They take cultures and try to determine exactly what is in there and what way is best to treat it. I end up losing the fight over getting a PICC line or central line when they start running Vancomyacin through my veins, and I blow three or four veins that first night alone.
The next few days are kinda blurry for me. See, at the same time, I started suffering from very short bouts of amnesia. I would forget where I was, or what I was doing at Johns Hopkins (I kept thinking I was back in High School). I got a neuro consult and although they’re testing just to make sure I didn’t have a mini stroke or temporal lobe seizures or anything like that, they think it might be a side effect of long term use of narcotic pain meds. I don’t know if I agree, but I do admire them for at least making an effort to make sure it’s not something more serious. They chided me a bit for not chasing the neuro stuff more aggressively (like going to get all the test my neuro ordered or going to see him more often) and I explained that I have been putting out fires since August and am doing my best.
Anyway, now you know enough of the backstory to get to the point.
Here is the TL:DR Bookmark
The Infectious Disease Doctors, The Plastic Surgeons, and The General Surgeons all agree.
The reason I am getting these infected abscesses in my abdomen is because of the mesh that was used during my ventral hernia repair back in 2009. Yes, that was Dr. WLS’s doing.
They used mesh to hold up and strengthen my abdominal wall, and in the process the mesh grew a “biofilm”, basically, a wonderful fertilized area for bacterial infections to grow and flourish.
Option One: “The Big Deal”
I will continue to have these infections while I still have the mesh inside of me. Removing the mesh, however, would be a big deal surgery wise. The mesh is covered in adhesions, and may very well be attached to my intestines, and it was put there for a reason. So this surgery, which I’ve nicknamed The Big Deal, would be a team of surgeons going in, finding said mesh (it doesn’t image well on CT or Xray), carefully removing all the adhesions, removing it from my bowels (which could get complicated very quickly, and include such favorites as “Bowl Resection”).
The surgeons are giving me all the exact same doom and gloom songs that they did about the surgery in December; that I will definitely be in the hospital for close to a month if not longer, that there is a really good chance I won’t make it through the surgery (especially now that I had a hiccup in the Dec one), and it will be a very long and difficult recovery with lots of creative agony and embarrassment. But this time, none of the surgeons want to do this surgery. They all feel this is something we should wait, and plan, and know the area super well beforehand, for the reasons we all know and have discussed.
The only way The Big Deal would happen during this hospitalization is if I spiked an abnormally high fever (like 104), or in some other way showed signs of advanced infection.
Option Two: “History Repeating”
My second option, which is still very much on the table for this hospitalization, is to address this specific abscess. That would entail having much the same surgery that I did in December; it would be much more superficial than The Big Deal, in that it would not entail cutting into the muscle wall or anything like that. It is still as dangerous as it was last time, but we also know that I did very well with the surgery itself and healed fairly well.
Option Three: “No Cuts, Just Infinite Pills”
This is the option most of the doctors (but not all) are currently advocating for, depending on how the next few days go while I’m here. This course would be to put me on really strong “nuclear bomb” home antibiotics, either via a PICC line or oral meds, for six to twelve weeks. After that, I would be given a permanent prescription for whatever antibiotic they feel will fend off more infections in the abdomen. I would still have the mesh, and that would still be fertile soil for growing infections, but the antibiotic would hopefully keep the infections from becoming anything to write home about.
Before you get all excited that there’s a non-surgical option, there are some big drawbacks to both being on a nuclear bomb level antibiotic for six to twelve weeks, and there are some bigger drawbacks to being on a permanent antibiotic prescription. Now, I’m saying “permanent”, but that makes the assumption that we never decide to try to correct the problem surgically.
Now, this makes it sound like I have a decision to make, right? Not really. I need to be informed about each of the options, and have a general understanding of how I feel about them and how seriously I want to pursue them. But how things like this usually play out is that the doctors will look at all the test results and data and make the best decision based on their knowledge and experience, and then recommend that choice heavily to me. It doesn’t mean I couldn’t chose to advocate the fuck out of a different choice if I really wanted it (like in Dec, when Dr Sacks kept suggesting reasons why we’d postpone the surgery another six weeks), but I’m the type of guy who trusts but verifies.
If we lived in a world where I could make a free and conscious choice, I would probably choose History Repeating for the right now, and then spend the summer preparing for The Big Deal. I’ve already reached out to Dr. Awesome and asked her if she might be willing to look at my current records and give me a consult over what she thinks is the best choice; but I did this with the covert agenda of asking her to be my surgeon for the Big Deal. Dr. Sacks would handle History Repeating, but I know from past discussions that he would feel uncomfortable doing The Big Deal all by himself. He and Dr. Awesome have worked together in the OR before, so it’s possible to get them to team up for The Big Deal.
Right now, they’re still trying to get a very accurate understanding of what types of infection I have growing in my abdomen, and also digging up information about the mesh that was installed – when, what type, where, etc. If I had to take a wild guess as to how much longer I am going to be here, I’d say at the minimum three more days, at reasonable maximum (barring surgery) I’d say a week or a week plus a day or two. If History Repeats, I would bump that up to two to three weeks.
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