Opening Up Yet Again

April 20, 2013 at 4:48 pm (Death and Dying, Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , )

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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You Can’t Get There From Here

November 13, 2012 at 8:21 pm (Living With Chronic Illness, Medical, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , )

If you follow me on social media (primarily Facebook), you’ve gotten little updates on the current situation, but I’m going to tell the whole story -albeit in short form, or as short as I can make it- of this current trip to Johns Hopkins. Yes, I am back in the hospital again.

Friday, I took my first dose of Isoniazid (the new TB drug). I waited until then because both of my bad experiences with Rifampin peaked on the second day, and this way it would be a Saturday so Rave could help me or take me to the ER if things got bad. I admit I was pretty nervous when I took that pill, and for most of the morning and early afternoon I was hypervigilant to any ache or pain my body may have.

Part of this hypervigilance makes me aware of how bad the pain in my pannus had become. Ever since the beginning of November, the very bottom of my pannus has been extremely sore and swollen. A light graze against a doorjamb or accidental poke made me shrink back in pain. I hadn’t realized up until then how much it was affecting me, and even the way I was walking.

But I went about my day, watching Glee and getting ready to write my silly Glee blog. I took a break and was sitting on the porch reading Twitter, and I realized my belly pain had increased, and I was feeling a little antsy. I got worried, as Rave wasn’t due home for another three or four hours, so I went upstairs and crawled into bed in hopes that rest would make it better.

I felt marginally better, although I had started feeling like the room was pretty warm. I struggle with odd temperature disregulation all the time, so I didn’t think too much of it. Rave brought me up dinner but I wasn’t all that hungry.

In fact, halfway through I started feeling overly warm and dizzy. I laid down and decided to take my temperature. Good call – it was 101.5. This was troubling, though.

I have three medical things I’m focusing on right now: the wound on my back, the new TB drug, and my pannus/the upcoming surgery. For all three, I am supposed to go to the ER if I have a fever over 100, nausea, lack of appetite, pain/discomfort, etc. I decide to wait a bit and see if eating had somehow spiked my temperature, but three hours saw no decrease. It was time to go.

Johns Hopkins (JH) is about an hour and a half from where we’re temporarily living in Hagerstown. It was a long, tense ride as I felt increasingly uncomfortable and alternately cold and hot. When we arrived, there was a collection of JH’s security cars parked around the entrance of the ER. Turns out it’s a “crime scene”, according to the policeman who directs us into the ER. A judicious welcome?

Once again, the big whiteboard announces there is a four hour wait to see a provider. I have to admit, when I saw the motely crew of all sorts of people waiting, and the remnants of adrenaline from whatever “crime” took place before we got there, it made me think of Stefon. On Saturday Night Live (shut up, it is not dead, and I have a giant boycrush on Fred Armisen) Bill Hader has this reoccuring character on the Weekend Update segment named Stefon. He is an effeminite hipster club boy who comes on periodically to recommend the newest hot spots, usually in conjunction with a holiday. I’m writing this entry on my phone, so I can’t embed a video, but trust me and go look Stefon up on You Tube.

Now that you’ve done that, you’ll understand what the ER was like when we got there. Luckily, I was called to triage quickly and then fasttracked into the ER in less than an hour.

This makes me happy because we didn’t have to wait, but anxious because that’s *never* happened to me before (going into the ER straight from triage, except in the case where the ER was empty or having a slow night). It turns out we’re just going to wait in a private ER room instead, because I think we were there for at least four hours before we saw the actual doctor.

It turns out it’s not the TB drug; they’re not even concerned. It is, however, that my abscess has regrown to almost exactly its old size, except this time it’s full of pus and other infected tissue. A new drain is inserted, and they admit me to drown in IV antibiotics and see what happens. There was some talk of doing the panniculectomy now, but the plastic surgeon thinks that it’s best to try to remove as much infected tissue as we can before we go cutting it up.

They’ve also noticed that new parts of my pannus are showing signs of other infections. The pain from all this crap is bad, and unrelenting. I am struggling with the doctors for adequate pain control. At least they had a glimmer of understanding of my opiate tolerance; when they reinserted the drain this time, I was healthy enough for twilight sedation. Two or three miligrams of Versed and a few of dilaudid and I am still alert and oriented? Even with that, it takes me a day or two to get back to the same treatment I had when I was here last. Finally, as part of the steps towards discharge, the surgeon I really like (whom I have nicknamed Dr. Awesome) figures out a pretty workable solution that relieves a real portion of my pain *and* is something I can continue at home. (She increased both the amount and frequency of the opiates I take for chronic pain. She is the first to state openly that although the 2mg dilaudid IV that I’ve been getting feels good when it’s first pushed, it is still too small a dose for someone with my level of tolerance.) Now we’re hoping that the pain management doc will sign off on the increase, at least temporarily, so I can go home with my pain managed and supported through the surgery in December.

Once again I go through IV sites like cheap pantyhose, and the subject of a central line comes up but too late to do me any good. The antibiotics are shredding my thin, weak-walled veins. Both Zosyn and Vancomyacin have that effect on people with typical veins, and it’s just exacerbated with all the other meds they inject into my line.

One of the challenges during my last stay was that when they cultured samples from my abscess, they weren’t able to grow anything. This doesn’t mean there isn’t an infection, but that it is likely not a run-of-the-mill one. This is why when I came home last time there was a lot of talk about MRSA. However, this time the culture does grow something: Pseudomonas. When they tell me this (during a rushed physical exam with a student present), I fight back tears and I don’t know why. The doctor doesn’t give me any information about it.

When I get a chance to both consult my favorite doctors (Drs. Wikipedia and Google), it becomes more apparent why I had such a strong reaction. One of my friends who had died from HIV had Pseudomonas, and it’s one of those infections that people with healthy immune systems are rarely affected by. This is yet another diagnostically relevant piece of information – although my doctors and I have frequently used the term “immunocompromised” to describe my situation, I don’t have any real medical proof (other than observation and/or anecdote) that my immune system is weak.

There is the diabetes, which at any point in the game can weaken or damage a person’s immune system, but it bears repeating that regardless of how morbidly obese I am, my diabetes is pretty mild. My A1C hovers between 5 and 6, and frequently lowers to “pre-diabetic” levels. My blood sugar numbers are reasonable as long as I am not in severe pain or under a lot of stress. (Or eat a lot of processed sugars, which I have made good strides in that department.) Overall, my diabetes hasn’t been chronic long enough, or severe enough, to make it a viable scapegoat for this.

Before anyone goes there, I am HIV negative, although I did have a pretty serious scare in the 90’s when I had several false-positives in a row. At this point in my life, my exposure risk is low and getting lower. I haven’t had penetrative sex with a factory equipped penis in over two, almost three years, and the chances of it happening again is pretty low. (A tale for another day.) I do still pierce strangers both as pick-up play as well as suspension work, but I’m pretty well trained on how to avoid fingersticks and how to treat one to lower my risks.

The thought I’m having, and honestly have been having for years now, is Lupus. Yes, I know, it’s never Lupus, but sometimes House is wrong, too. My mom was diagnosed with SLE in her 30s, and it made her pretty sick right away. There is some heredity with SLE, and that link is most often between a mother and her first born daughter (which would be me). All along this journey towards diagnosis, I have requested the most basic screening test for it and have yet to get a result. However, there are lots of cases where someone has a negative ALA and still has Lupus. I am seriously considering contacting a rheumotologist and being seen before the surgery to start the longer process of ruling everything else out.

Anyway, regardless as to what lowered my immune system enough to bring on this infection, I was actually lucky. There are two strains of Pseudomonas: one that is “pan-reactive”, or that can be treated with standard (but strong) oral antibiotics; and the other is similar to MRSA, in that it doesn’t react to anything but the very strongest antibiotics. I have the former, so I’m taking a combonation of Cipro and something else (I can’t recall the name).

When they admitted me, they said it was for two or three days. Last time, it turned into ten. This morning makes it day seven, but there is a strong rumor that I am getting discharged today. We’re waiting to hear from my pain doc, approving the much stronger dose. I’m also thinking they’re also watching to see if there has been any reactions with all the new-to-me meds. I am really hoping I am released, as it has been more difficult than usual to get enough quality sleep, and I have started havin mirco-sleeps (where I go from being awake and focused on the day ahead to falling into a deep sleep in seconds, dropping whatever is in my hands and even snoring; only to wake up a moment or two later unaware as to what happened. I also find myself “coming to” having struggled to continue writing. I’ve had other sleep-related episodes and even asked if maybe the doc would want to add a sleeping aid so I could sleep through the night.

It’s hard to write about this hospital trip without mentioning a real difference between this one and the one before, but it touches on an idea I have for another DfaD post, so I’ll just put it out there and elaborate later. Last time, I was here for ten days and had somewhere in the ballpark of ten to fifteen visitors; this time, I am going into my seventh day and I have had three. I know that last time I made several FB posts requesting visits; this time, I was careful to make a single request that said I was interested in visitors (and then 2 posts looking for someone to give Rave a chance to go home). Other than two notable visits, including the lovely K and the fabulous M who jumped on a train and rode all the way down from CT to spend 24 hours with me, I was alone every day until Rave came after work. But like I said, there’s a bigger post floating around in this.

So hopefully this is the slightly more detailed version of what the last week has been like. I will definitely be posting to FB/Twitter when I am released and when I get home. For now, I’m going to try to catch a little more shuteye before the onslaught of the “dawn docs” come a’roundin’.

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