She Has Taken Half My Heart

September 11, 2015 at 10:56 pm (Uncategorized)

arty heart

She Has Taken Half My Heart

She didn’t want my Work
I am already doing it, and doing more of it, and
doing less of other things.
Dedication, in this case,
means spending your time seeped
in Passion, Purpose, and Production
while at the same time fighting
Distractions, Drama, and Dead-Ends.
Why should She merely ask for something
I’ve already given Her
or more precisely
given Her father who in turn gives it to Her?

Nor did my Will interest Her;
I play out my submissive fantasies with the Gods,
doing what They ask, even if I don’t understand
or feel so inclined or like how my gut feels about it.
I empty myself of as much desire,
even when it means crying over dead dreams and visions
a loving marriage, a thrice filled cradle, a rounded family,
a dog named Mr. Bojangles running in the yard
it sounds so unlike me, but that’s because the me
surrendered their Will long ago
but also surrendered their Will yesterday, today
each breath another surrender.
Why would She merely ask for something
I’ve already given up
continue to give up with
as little contrariness as possible.

Read the rest of this entry »

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I Have Become Irreverent. I mean, irrelevant. Yes, irrelevant. (Emotional Rant)

July 1, 2015 at 5:06 am (Being a Rock Star, Del in person!) (, , , , , , , , , , , , , , , , , , , , )

It doesn’t matter that you recognize me, that you know my stories, have heard of my reputation. It doesn’t matter that I’ve gone to great lengths to carve out a little corner of this mad world to share my ideas and my sick sense of humor. I received no badges nor awards for helping others feel less alone with their self-made stories of suffering and loneliness. As I have less and less to write about a world quickly becoming more foreign every day, my meaningfulness and perhaps my very existence becomes the business of a small few. The ones who can’t bear to see me slink away in the night. But that’s not what really happened.

I’ve been forced to dive into almost a decade of emails, chats, notes, cards, etc, starting from when I only got teaching gigs because I was part of SMS – although as I have watched that group evolve, I don’t really think I ever really belonged. But through moxy and chutzpah and all those other odd sounds we relate to stupid confidence we have permission to both hold awe and laughter at the same time, I got some wonderful chances to live in the rarified air of a “commUNITY” (or my preferred “demoGRAPHIC”) where I did really feel that although I was never a size 8, would never be a bastion of femininity nor masculinity, that what got me hard sounds illegal to people outside of our dildo-shaped ivory tower, I did hit a ceiling.

Del the hypocrite. Blasting Pagans in ever increasing rantypants blog vomitous that our community values lay persons as much as clergy, elders, leaders, and mystics, crying for real because an event organizer I went to great lengths for threw me away before he even knew what it was that I was actually doing at his beloved events. Oh, it was never official – no one would dare admit out loud that I had overreached when I pointed out exactly how many volunteer hours doing things I did not find enjoyable nor did I do them “for the experience” nor the “exposure”, oh no. We never say anything untoward to the person we’re dissing; we wait for the prerequisite fifteen seconds after you leave to collectively feel better because at least it wasn’t happening to me…yet.

I have decided that I’m semi-retired. I haven’t actually taught at one of the East Coast circuit of events in about a year. (I do not count Catalyst Con among that, because it’s a very different thing. You can start by thinking of a certain idyllic camp ground that I haven’t been to for two years.) Yes, it’s been that long. Sure, it’s easy to chalk it up to my spiraling health, but that isn’t all the tuna in that can. I just don’t feel it anymore. In almost a literal sense.

Love and sex have become poison to me. When I can even summon the energy and the arousal for a good wank, I usually stop halfway through because I’m already imagining what excuse I’m going to hear about how this was fun and all, but they don’t want to be around for the other stuff. I’ve had some really energetically-destroying break ups in the last five years, and as I’ve confided to some, I am physically unable to even imagine having sex. Not “I can’t find a good fantasy to wank to”, but “If someone were to propose a romp with me, I would have just about no idea as to what they meant”. Also not that I’ve forgotten how to do it (and have been told I do it well), but that when I allow myself the briefest of moments to actually feel pleasure at the mere idea, the entire weight of my rapidly collapsing sense of self immediately floods my hormone channels with a hundred different reasons that sex is poison, and not even a sweet-tasting one at that.

It’s probably ironic in the Alanis Morissette way  that the one time someone has accused me of become a sex-positive professional (as in, getting paid enough to sustain my existence and expenses doing just that), it was in a court of law to prove what a secretly duplicitous person I am. Yup, it is now writ in the American Court “permanent record” that I am a professional something or other, and it’s used to hurt me. That just about sums up how I feel about desperately wanting to suck someone’s cock and knowing at the same time that there isn’t a soul who would trust me with their junk between my teeth. (Which is a goddamn shame, because I get compliments from the gay menz about my fellatio capacity.) When I dismiss those lovely compliments, I’m not doing it as some sort of egoless dodge or a invented humility: I literally think you are incorrect, that somehow you have been deceived.

At Yule, my lovely Kindred did a very moving ritual where we had to sacrifice something we felt was holding us back from our true passions. It was the first time I let anyone other than Rave see what has happened to my lower abdomen due to the ravages of 2013-14, when my body was changing radically and the doctors were wrong, and then more wrong, for a whole year they were wrong until it got so loud and brash that it was finally posted on a billboard across the street from the posh offices of my world-renown-hospital specialists. And the damage was done, and cannot be fixed unless I’m willing to risk my life. Which I am not. At least, not for that.

I tell people that I am the target of a large amount of slander, libel, threats of violence up to and including death threats. There has been a small escalation as of late, where I am pretty sure some incidents that have happened to and around our home were not coincidences. Another one of those times when I want to pick up a person desperately trying to be a shaman for Gods-know-what-reason and shake them and show them the notes on the windshield, the noisy investigations, the blog posts they don’t think I not only read but curate collections of. And no, I’m not talking about the obvious, because no. Oh, soon, I will have permission to loose my lips on some shit that has gone down, in a desperate attempt to have me die sooner, and with as much suffering as possible.

And I’m not making that up, either.

Am I depressed? Fuck, wouldn’t you be? I answer this the same way every time my primary care doctor asks. And she ups my antidepressants and asks about the last time I spoke to my counselor. I have regular meetings with the local Hospice palliative care nurse, at my house. I have a nurse who comes to give me meds and take labs.  I’m not exactly the life of the party I once was. And the pressure on and in my head that screams I just wish we could skip to the good part, and I’m absolutely okay if that good part is a remission of symptoms as much as any other outcome. Just right now, this, this quicksand of shit and rotted meat and broken oaths and broken windows and having to paw through decades of memories as though they hold no emotional sway, mere pieces of evidence of what a wretched human being I am for thinking that lying to me several, several times from the day we met until the day you decided this was too hard for you and completely abrogated the only thing you had to say to me as we officially parted ways.

I want to be clear. This is NOT* about my divorce. In fact, most of the time that’s a good source for a chuckle and a snappy comeback. It has something to do with the ridiculous amounts of completely irrelevant reams of paper that no one will actually read – but I’m happy to supply it. Because what is most appropriate for me right now is large amounts of paperwork as though Catbert were at the head of this thing.

This is about the role of the dying man – because we’re all dying, every single day. We play these elaborate games lest we remember that no one reading this in 2015 will live to see 2100, at least not in the living meatbag sacks we are today. (And please, this is not the appropriate time or place to discuss human life longevity or uploading your soul into a computer, okay nerds?) But I don’t share this early morning rant written on day three with absolutely no sleep because side effects, on the blog where it might seem most apropo. No, because this part of my job is directly related to the dehumanization that one experiences once you cross a line from virile to senile. From full of energy and life to barely being able to clothe yourself without a nap afterward. From remembering every embarrassing thing I’ve done in your presence to forgetting to close your garage or turn off the stove.

I don’t feel relevant anymore. I only have fleeting moments of feeling like lifeblood isn’t just pooling into my legs, cementing me in front of my computer even when I have friends waiting in my living room in hopes I can gain a spoon to share with them. I look at my class list and think, “When was the last time you actually did that, y’know, for fun?”

I never know how to end these cathartic blog posts. I just run until I hit empty, and then press the button. The rest of it is up to you.

* This word, which changes the entire meaning of the paragraph, and arguably the whole post, was inadvertantly left out when the entry was published.

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April 21, 2015 at 7:59 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Living With Chronic Illness, Medical) (, , , , )

It’s been some time since I updated ye faithful readers as to what is going on with me medically.

Some of you may know that I’ve spent more time in Johns Hopkins than I have in my own home since August 2014. I was diangosed with right-sided heart failure and we struggled to figure out why I kept slipping into volume overload (when your body has a lot more fluid in the tissues) after being discharged. There are a lot of theories, but the story is about to change, so don’t jump to leaving a comment just yet.

When I get that swollen, the infected tissue from my pannus starts to hurt tremendously.

So the status quo since August has been:

  • Go to Johns Hopkins ED as directed by another doctor
  • Spend a month diuresing down to my dry weight
  • Deal with bad pain from my pannus
  • Get to dry waight, get discharged with plan
  • Do the plan by the letter
  • Notice that the swelling is back
  • Seven GOTO One. (in less geek terms, rinse and repeat.)

I’ve been in the hospital more often than I’ve been home in the last six months.

Things are moving quickly, but not in a way I would have chose.

Today I learned that my congestive heart failure now includes both sides of my heart (whereas before I had been diagnosed as having right-sided heart failure). This obviously affects my prognosis, and not in a good way.

I’ve gone ahead and canceled gigs through the end of the summer. Not only does travel become much more complicated when you’re terminally ill, but I can’t guarantee I’ll be out of the hospital, much less felling well enough. And that’s not fair to organizers.So if you’ve been hoping to catch up with me at Beltane, FSG or some other event I am usually at, you should start thinking about an alternate plan.

Tonight they are moving me to a different part of the hospital. I joke with my nurses that I’m trying to win “Hopkins Bingo”, where a patient must have a stay of longer than 24 in a building in order for it to count. When you’ve stayed in all of the different buildings, you win. I got a difficult square this time; Bloomburg is 95% pediatrics, but one floor is the cardiac ICU stepdown, which is where I was. That’s not easy to get at all unless you’ve been playing this game far too long.

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Reality Bites

March 1, 2015 at 2:40 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , )

This entry will be short and to the point. I know, so unlike me. Well, here it goes.


Today is my Mom’s birthday.

Yesterday, I met with a Hospice/Palliative Care nurse.

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Difficult Choices

February 18, 2015 at 1:46 am (Uncategorized)

Recently, I feel like my life is like a very specific staple scenario from low-budget horror flicks. The Victim is running away from The Monster. Victim surveils the options; hide in that closet, climb  that tree, shoot the gun, or step behind that curtain and surprise attack. In the proverbial theater, audience members already know the Victim’s fate: when they bury themselves in the closet, a strange hand emerges from the old coats and drags you through a gate to the Monster’s basement laire.

I’m not really a horror writer, partially because I am extremely picky about what kinds of horror stories I will read or enjoy. And usually I find myself confused and lonely when I realize that I’m the only one rooting for the Monster – or even having empathy for them.

But how this relates to my current circumstances? Let’s start with the practical.

I’m back in the hospital after yet another terrifying encounter in the Emergency Department’s ICU room. Again, my blood pressure plummeted to ridiculous proportions, and this time I also had sepsis. I was stuck in the ED ICU for over 30 hours, as beds in any of the departments prepared to handle my case were rare at best. There was a fleeting discussion of putting me in the pediatric ICU (and if that had happened, it would not be the first time I was routed through peds to get a critical situation taken care of quickly). Eventually, I was admitted to “Stepdown” – more intense than a regular medical floor, but less so than ICU. This time, the floow I was on was much closer to ICU than the one I stayed in last time. There was a fight about whether or not I could use the bathroom on my own, and the “door” to the loo was a curtain that left much to …glare at.

Eventually I was transferred to a more typical medical floor, where the doctors are working to once again give me the Violet Bureagards’ treatment. My attending doc, who I will call “Dr. Nice Guy” because he really is a very sweet guy, made it abundantly clear to me that this time things are going to move slowly and take a lot of effort. At least I’m in one of the newly designed rooms (in fact, the exact same one I had when I graduated from the Janitor’s Closet) which has a lovely view of the Dome.

But no matter how lovely the view is, I’m frustrated and angry and depressed. Having an occasional break from the world is nice; not being able to make plans or have privacy whenever I want or need it are not. It may seem like a terribly small issue in the face of a terminal diagnosis, but it really is the little things. I don’t need fireworks or beach breezes in our gauzy sand boudoir. I just want to be able to read in peace, to chat or speak to friends as so I choose, to order chinese or eat dessert first.

I feel shitty. I have a lot of pain directly related to the CHF or the renal insufficiency. I don’t get good sleep in hospitals; I barely get good sleep at home unless I can sleep from 8a to 12p or something like that. I have a lot of raw skin and blisters. I very rarely get excited over what kind of food we’re getting for lunch.

There are other stressors, too. My soon-to-be-ex is exacerbating my current situation as much as he’s helping. It is his insurance which gives me access to the doctors and programs, but there are new vaireables that have been introduced that only make it more complex and fucking depressing. Both my beloved Duckbus and Rave’s truck bit it within a few weeks of each other. We purchased LRH; a fat, sweaty, charismatic white minivan that looked better on paper than in real life.

Hel has declared this year The Year of Difficult Choices. That was not Her first pick, nor even the second, but it was the one I thought I could both live with and explain to other people when needed. I’ve already been faced with some very taxing choices, and there are many more to come. I was very assured that so far I’m doing a good enough job choosing the path(s) She finds the most pleasing.

I find myself thinking about my childhood and young adult years; about the people I would have killed for then, for whom I wouldn’t even push someone out of line at the supermarket for.

I’ll write more later. In case you’re curious, I am in the Nelson tower in room 788 and would like visitors (who let me know when they are coming ahead of time).

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Close Call

November 25, 2014 at 3:09 pm (Congestive Heart Failure, Death and Dying, Hospitalizations, Medical) (, , , , , , , , , , , , , , , , , , , , , , , , , )

Everyone in the room – the doctors, nurses, Rave, and even me – all thought the same thing, but no one wanted to say it.

For me, it became tangible when I realized I was having visual hallucinations and disturbances and couldn’t hear out of one ear. My blood pressure numbers were getting lower and lower and no one knew why. My chest hurt like crazy and I was struggling to breathe both out of pain as well as panic. The doc even asked me what my advanced directives were – like did I want a breathing tube – which they had never done before. That’s when I knew I might actually die, like, right now.

I’ve written a lot about how I hate asking people for rides, that it feels like panhandling. Even when people assure me that I can always ask and they like doing it, I still feel terrible about the whole process. After I left the hospital in October, my team had set me up with a slew of follow-up appointments; the idea was I was not well enough to go back home and return to normal life, but I wasn’t urgently sick enough to warrant staying in the hospital anymore. In particular, Johns Hopkins runs a “Heart Failure Bridge Clinic”, the “Bridge” being between hospitalization and home. You’re able to access services that regular doctors or cardiologist offices don’t offer, like IV diuretics.

I was able to attend my first Bridge appointment, and it was pretty standard. Other than a small med adjustment, it didn’t seem like a big deal. So when I wasn’t able to find a ride to the second appointment, I didn’t really stress over it. But then I missed a PCP appointment as well. It was a combination of people legitimately unable to make it and me not being in an emotional state conducive to putting as much effort in as I should have. Both Rave and I have been swamped with a preponderance of to-do items that are all “very important” and time sensitive as well.

I don’t remember when we first noticed that my blood pressures were off. I know I had started feeling dizzy and intoxicated without any cause. But however we got there, I started getting these ridiculously and somewhat unbelievably low readings with an average around 90/60. My home nurse told me to keep a close eye on it; well, that’s not exactly true, as she first recommended I go to the ER. When I told her I was feeling fairly okay and really didn’t want to go back to the hospital (can you blame me after a series of two-to-three week stays in the last four months?), she told me to keep an eye on it until I saw her later that week.

I decided to ask Dr. Google if there was some easy things I could do to bring my blood pressure up. This is when I was introduced into my current medical dilemma: as a congestive heart failure patient, I should severely restrict my fluid intake; but the one reliable way to raise and maintain a good blood pressure is to drink a healthy amount of fluids. So over the next few days I drank more fluids that I was “supposed” to and as it were, the more I drank the better I felt and the better my numbers were.

Well, not all my numbers. People with CHF have to weigh themselves every day because even small gains may be a sign of fluid retention and could require a change in your diuretic dosing. Every day I “cheated” on my restriction, the next morning would see the resultant weight gain; usually only a pound or two, but by the end of the week I was up over 10lbs. My nurse was pretty unhappy but we all agreed that since I had a Bridge Clinic appointment that Wednesday, I would just wait and see what they had to say.

Except that no one I asked could take me to Baltimore that day. By Tuesday midnight, I sent the message to cancel my appointment. I don’t know what my plan was, but until they invent transporters I didn’t have a choice. I couldn’t even decide to drive myself, because Rave’s truck is still too broken to pass inspection and she needs my car to get to work. I didn’t sleep well that night. If I called an ambulance, they would have taken me to Hillbilly Hospital, and that was NOT going to happen. I felt defeated and depressed.

Even though Rave has been in hot water at work over how much time she takes off (mostly to take care of me), on the off chance the PTO gods would smile upon her, she submitted a request before she left work on Tuesday to see if they would let her take me to the appointment. We were pretty convinced the answer would be no, but I didn’t have a lot of other options. We were both surprised that when she got to work Wednesday morning, she saw that her request had been approved. She hopped right back into her car and came back to Hagerstown to pick me up.

We made a mad dash to Baltimore as we were cutting it pretty close, and the Clinic is one of those draconian offices that refuses to see you if you’re more than 10-15 minutes late. We even called ahead to see if that would help, but no dice. On top of that, I had only been to the location once before, and it’s hiding in one of the regular towers (instead of in the Outpatient Center) and I didn’t know which parking garage we should use. To make matters worse, there was practically no available parking in the one we chose, so we spent another ten minutes driving around in circles. We breezed into the office exactly 15 minutes late.

The nurse practitioner took my vitals and saw both the weight gain and low pressure – 80/40. She left the office to call her supervisor. Rave and I figured it was to figure out how much IV meds to give me…until more than 20 minutes go by and she still hasn’t returned. Finally, I gave voice to what we were both starting to fear – that they were going to admit me on the spot. Which is sort of what happened. There weren’t any free beds in the unit I would stay in, and after taking my blood pressure a number of times and getting consistently low numbers she felt the best course of action was to send me to the ER so I could be monitored while waiting for a bed. I am very glad to this day that this is what happened, as if I had not been in the ER when things went south I don’t know what would have happened.

Now, it’s good to know that even though my blood pressure numbers were ridiculously low (normal/average blood pressure should be somewhere around 120/80), I was upright, alert, oriented. I felt a little dizzy, a little fuzzy, and I was struggling more than usual with my aphasia, but overall I felt okay. I was more upset at the prospect of yet another long stay at the hospital forcing me to miss something I was really looking forward to (Thanksgiving with some of my most beloved tribe of the heart) and more medical complications and/or restrictions. But then things starting getting worse.

The first thing that clued me in as to how serious things were getting was when they moved me into the ERs version of an ICU bed. I was wired and constantly monitored. They took my blood pressure in just about every way conceivable – while I was in different positions, on different parts of my arms, and with different sphygmomanometers. My numbers were getting even lower – 80/30. 75/45. 60/40.

All of a sudden one of my ears went silent. It both felt and sounded like someone had slapped a thick earmuff on one side of my head. And of course, doctors and nurses and other hospital personnel are asking me a thousand and one questions and now I couldn’t hear them clearly. I was also getting more confused and finding it harder to understand everything that was happening. At one point, someone offered papers for Rave to sign because I was acting so erratically. (Yes, it’s legal, as she is my designated medical proxy.) I do remember someone asking me to state what was in my advanced directives, mostly about whether or not I had a DNR.

That was the first time I really and truly thought to myself, “This could kill me. They’re doing this because it’s possible this could actually happen.”

That was also when I noticed the visual distortion. I saw fireworks everywhere. Lots of red and off-white lights danced everywhere I looked. After images were causing trails if I moved too quickly (or if the thing I looked at moved quickly too).The light was getting brighter, to the point where I couldn’t really see anything else around me. My sense of chronological/linear time goes fuzzy at this point, so I have no idea in what sequence things actually progressed.

I do remember starting telling people, “I’m really scared. I am really, really scared.” Somehow, my reasoning said that if I refused to lay down I wouldn’t pass out or die. I started breathing more deliberately, again thinking that if I just kept willing each breath I wouldn’t stop breathing. The lowest recorded blood pressure was 40/30, although doctors are skeptical that it actually got that low since, in fact, I didn’t pass out.

That was just about a week ago. I eventually made my way into the critical care unit (which they call “stepdown”, as it is a transition between ICU and a medical floor) where we found out what the hell was going on. It seems there were three forces at play, and all of them were playing to win – which in this case means “messing with Del”.

  • CHF/Edema – In order to avoid retaining fluid which makes my poor heart and lungs work harder, I have to stay under a certain amount of fluid intake a day. I also take “water pills”, aka pills that make your body absorb less fluid and just pee it out instead. However, if I flush out too much fluid it puts a strain on my kidneys, which are already starting to show signs of damage from all this stress. It also leads to…
  • Dehydration – I am only supposed to ingest between 1.5 and 2 liters of fluid a day, and that’s not just what I drink. It includes any substance that becomes a liquid by the time it gets to your stomach, like jello, ice cream, pudding, salad dressing, sauce, etc. But as we all know, bodies need a certain amount of fluid to regulate themselves. I’ve always had low blood pressure, and 9 times out of 10 that’s considered a good thing. But when I was feeling dizzy and ill and I was pretty sure it was due to how low it had gotten, Dr. Google said the best bet to raise it was to drink more fluid, so I did. And even though I had increased my intake to almost 4 liters a day, I was still dehydrated because…
  • Infection – My pannus (the hanging part of my belly, the part that the 2012 surgery was about) is super swollen, which I assumed was part of the water retention caused by the CHF. Turns out that was only half of the story. My pannus is, once again, riddled with infected tissue. There isn’t a collection, like an abscess, that can be drained or removed. It is diffuse through the tissues. So my body was using every bit of fluid to make white blood cells and other infection-fighting stuff, which leads us back to dehydration. The lack of available fluids meant that the infection could proliferate faster and more efficiently. It didn’t help that I had to skip taking some of my meds for a month due to some health insurance stuff, and some of them were my maintenence antibiotics. (Bad Del.)

Yesterday I was transferred out of the critical care unit back to a medical floor I have been to before, which is nice because I know and like most of the nurses here. It also means less wires and other restrictions. The infection is pretty bad and causing a great deal of pain – the doctors keep telling me it’s the kind of healing that gets worse before it gets better. I’m on the good drugs for now – vancomycin (antibiotic version of a nuclear bomb) and dilaudid (painkiller version of a nuclear bomb). I’m in a lot of pain, but in a weird way it’s a familiar kind of pain, which makes it a little easier to deal with.

Most people with CHF really struggle with knowing how much fluid they can safely have without causing problems. Unfortunately, for me it looks like the line between too little and too much is very fine, and I’ve been warned that not only will it take some time and experimentation to figure out exactly where that line is and that there will be a lot of fuckups along the way. Fuckups mean more hospital stays.

My primary care doctor has even mentioned that I could go live in a skilled nursing facility – basically, a special floor in a nursing home that’s reserved for people of all ages who are too medically complicated to live at home but not sick enough to stay in the hospital. The idea is abhorrent to me, but if my lack of transportation is putting my life at risk I can’t fully dismiss the idea. Rave and I have started preliminary browsing to see if moving to Baltimore is even possible. However much we hate living in Hagerstown, the place we have is a godsend of accessibility; Baltimore is full of three-story row houses which will very likely not work for us. But I can’t even think about moving with a full heart until I deal with the divorce settlement, because Mike is claiming I have a part-time job with which I can support myself and therefore he should not have to pay spousal support or cover my prescriptions like he’s been doing since we split. I can’t afford a lawyer and few lawyers do family law pro-bono unless there are custody issues. It’s a big morass I cannot deal with without getting chest pain – and I’m not saying that to be melodramatic, I’m saying it because it really does cause me that much stress.

That’s the story of my close call. The reality and tangibility of the end of my journey is coalescing, and it’s a lot more terrifying than I was prepared for. One of my doctors admitted to me that if he were in my shoes, he’d be freaking out a lot more than I am. He even offered to send me a social worker to talk to, which is probably not a bad idea.

If you wanted to send flowers or the like, you can email Rave at delandrave at gmail dot com and she’ll give you the information. It would be greatly appreciated. I’m feeling kind of lonely and sad these days.

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Congestive Heart Failure And Me

August 27, 2014 at 11:22 am (Congestive Heart Failure, Hospitalizations, Living With Chronic Illness, Medical, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , )

I have been diagnosed with stage 3, right sided congestive heart failure. Let’s break that down so you understand what that means. Keep in mind, I’m not a doctor and this is by no means meant to be a completely scientific lesson on heart disease. I am sharing the information I feel will help my friends and family understand how this diagnosis affects me and what it means. Feel free to ask your doctor for more information.

I’m going to start with the “congestive heart failure” part. Your heart is a wickedly smart little organ. It knows exactly how much blood each of your organs needs to operate at their maximum. When one or more of the organs needs more blood, the heart is able to increase how fast it beats, pushing blood faster where it’s needed.

The first symptom I had was that my heart was beating pretty fast – upwards of 120bpm. Obviously, that can be caused by a lot of less serious reasons, so although it was something my doctor was aware of, it didn’t cause any alarm all by itself.

Meanwhile, my right ventricle, the one in charge of getting the right amount of blood to my lungs, thought something was up. It wasn’t getting as much fluid back as it was sending out, which is cause for concern when you’re a right ventricle. It assume that there has been some trauma or injury to the lungs wherein there is blood loss, so it wants to pump harder to make sure the wound doesn’t drain the blood the lungs still need to function.

But in my case, it was not a wound that was causing the lack of fluid return. My body was soaking it up, in the form of edema. That’s the reason my feet and ankles, and then eventually my abdomen, got really swollen. The reason my heart thoughts my lungs were in trouble is because my lungs were really struggling with keeping my oxygen levels high enough to function. The struggle was primarily caused by my sleep apnea – I was using a CPAP setting from 2005, and a lot has changed since then. I need a BiPAP in order to get the right amount of oxygen at night, and the more oxygen and the less carbon dioxide in my system, the less the demand on the right ventricle.

CPAP? BiPAP? Is this like a Pap smear?
No, thank goodness. Continuous Positive Airway Pressure is one way to make sure someone’s airway is open and functioning while they are asleep. If you’ve ever shared a bed with someone who snored terribly, that snore was likely caused because it was the only way to get the passages open enough to maintain enough oxygen. With a CPAP, it gently blows air into your nose (and mouth if necessary) to help keep the airway open.

With CPAP, there’s one number: the amount of air pressure the person needs to keep their passage open all night. However, if the person needs a very high amount of pressure, it becomes difficult to exhale without feeling like you have to use your exhale to push against it. What makes sense is to have two pressure settings: the higher one when you breathe in, and the lower one for when you breathe out. Thus: BiPAP. Bilevel positive airway pressure. BiPAP comes with a second usage, which is that it can also stand in as an external ventilator should someone have significant trouble breathing night *or* day.

I knew I needed a BiPAP for a few months, but I was dealing with a lot of doctor office monkeyshines and did not get it. But I will have one when I get home, as the hospital has taken care of that.

The Right Side of Heart Failure

Like I’ve said earlier, the right ventricle is specifically tasked with keeping the lungs happy. Because I was having severe O2 deprivation due to the apnea, my poor little right ventricle did all it could do. Now it is damaged from being overclocked for so long. Part of the reason it took so long to figure out what was going on is that the symptoms of heart failure are easily attributed to being fat, even if you aren’t really fat to begin with. CHF makes you feel tired all the time, it robs you of your stamina, you lose your breath even when you aren’t doing anything, and then the swelling comes. The edema is made worse when it gets to the abdomen, because then it is putting extra undue pressure on the diaphragm and lungs, making it even more difficult to breathe.

Although I am still a little angry about it, I have come to accept that even though I was clear with many doctors about these symptoms as soon as I noticed them, many of them dismissed me and told me it was because I was fat and I should reconsider weight loss surgery. (In case you weren’t a reader when I wrote my many rants on WLS, look at the tags on the side of this page for more info). I mean, my weight is a contributing factor (but not the only factor!) to my apnea, so in a way it is also a factor in my heart failure. But lots of people get CHF, and getting it at my age is getting more and more common.

What does this mean? Are you going to have to stop traveling/teaching?

Well, Del is going to have to get used to a daily regimen. Not only am I increasing the amount of prescriptions I need, but there are other changes I need to track carefully. I will have to weigh myself every single day (whee!) and do it in kilograms because metric! If I gain even a little bit of weight, I have to call my doctors ASAP to see if it’s related.

I am also going to have to learn how to live with strict fluid intake rules. I am only allowed to have 2000mg a day of any kind of fluid – that’s 2 liters. I have a plan on how to measure this, so hopefully that will work. I’m just from a world where drinking fluids was a good thing, and there was no such thing as too much water.

The reason I have to restrict my fluid intake is because should my body have extra fluid, it is likely going to shunt it into edema, because the right ventricle will be all like, “Hey feet, I got some extra fluid here, so I’m a hook you up!” and my feet will be like, “No, dude, we’re already super full! I’m sure your fluid is tasty but I can’t even imagine another…oh. Thanks.”

The last part I’ll tackle is the Stage 3. There are 4 stages, with 1 being asymptomatic and 4 being severely damaged and in need of interventions like surgical implants, surgery, or transplant if the patient is young enough to recover. 3 means that I have significant symptoms, but we’re hoping that with a minimum of intervention I should be okay for a while. But I’m going to give it to you straight – this is not a thing you take a pill, you stop eating salt, and everything gets better. This will degenerate and become more bothersome as time moves on. At some point, I plan on writing about how this diagnosis takes some of the vagueness out of “Del is sick”. The monster in the closet (or at least one of them) has a name, a face, a sense of reality.

Please feel free to ask questions in the comments below. Just please don’t break my rule of offering treatment options unless you are a professional. I don’t want to know what your Uncle Tommy did to recover from CHF, nor do I want to read that article you saw on how CHF is a made-up disease to sell cardio meds. But at the same time, I want to make sure everyone has a clear understanding of what’s going on with me and how it affects things moving forward.


My blood sugar numbers were also wacky out on control when I got here, and I had a great endocrinologist who helped get me back to a normal-ish level. When talking about follow-up and finding the endo, I took a chance and mentioned that I was hoping to find an endo who would manage my diabetes *and* administer T. Without hesitation, he made me a recommendation to a Hopkins endo who does T for lots of different people. Even got me the number of the pysch I need to see for clearance before we can talk about T. He keeps reminding me that this is a maybe, not a yes, because I am so complicated; but he also said it may come down to an informed consent situation, where we go over the pros and the cons and then I choose what I think is best.

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Hanging In There

August 21, 2014 at 1:42 pm (Disability, Living, Living With Chronic Illness, Mental Health, Spiritual) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you’ve ever had any kind of conversation with me, regardless of the medium, there is an incredibly high probability that when you’ve asked some version of “How are you doing?” I have responded with my fallback, favorite, non-pessimistic, doesn’t-drag-you-into-a-conversation-you-didn’t-want-to-have response:

“I’m hanging in there.”

Those who get to know me more intimately hear that phrase so often it begins to lack meaning. Or they’ll see a twinge, a wink, a deep exhalation; something to cue the listener to the “where” I might be “hanging in”.

I learned at a party four years ago that “How are you, really?”, can easily be mistaken for “I know you had a medical ‘thing’ recently; please tell me how miraculous your healing has been so I can feel good about the world.” I know some people actually mean “I read your blog and I have a general sense of the technical side of what’s not working for you; we’d just like some secret stuff not shared on the blog and I know some pretty awesome doctors who treat Ginger Cancer*.” But once the gathering gets past the awkward social niceties, no one is sure what the next step should be. (If you’re roleplaying 1950, I believe it is to take his hat and coat and usher him into the downstairs sitting/crochet/wielding/welding/spelling correction room while asking him about coffee preferences.)

Sometimes people really do want to know how I’m feeling, generally or right in the moment. Maybe they read this blog and want to hear some of the wacky stories straight from my mouth, or they want to ask questions about things I’ve written.

And sometimes people are super grateful when I answer with something so non-committal, so they can skip past the whole ‘Del’s life is hard’ part and get straight to the “Do you want to go catch frogs with me?” mode. Or just about any other question or conversation or activity.

People are correct that when I go to a party or fun gatherings or even just have you over for hangouts, that I am both of the following at the same time:

  • Totally willing to answer any questions or share any details about my medical journey. Remember, that’s what Baphomet said in the beginning of all this, was to share my experiences as far and wide as I can.
  • Sick and fucking tired of every conversation I have with any human being on the planet is somehow related to me being sick, disabled, or in pain. I want to pretend for an hour or three that I’m just an average ordinary Joe doing ordinary Joe things like going to the movies or setting my friends on fire. Y’know, stuff that just happens every day.

I have been getting MUCH better at setting and supporting boundaries around these things, including being totally willing to withdraw into my bedroom if we are hanging out and I’m starting to feel weak, tired, in pain, etc. I warn people before they visit that it will happen, and sometimes it happens for the majority of a visit, and sometimes it was just during the most critical moments of why they came to see me. But there’s nothing I can do about that, so I accept it and move on.

Too Intimidating?

Another social thing I’ve been trying to figure out lately is that many people think of me as being intimidating. I think the first time someone brought this to my attention was a wonderfully powerful and bodily petite Priestess. We had been to a lot of the same events and such, and when necessary we’ve have fun and interesting but politely distant social contact. I couldn’t really tell if she liked me as a person, or if she was being respectful of my experience while secretly disagreeing with any one of my many unusual beliefs or practices, or if she just thought I smelled funny.

Anyway, said Priestess comes striding into my cabin during a camping event, and sits on the edge of my bed. “Del,” I paraphrased, “I am done being intimidated by you.

This is the sort of thing I hear a lot. People saying that they read something I wrote or went to one of my classes or saw me at a party but couldn’t approach because I am intimidating. It baffles me, as I try to be open and warm and friendly, even though I am introverted down to the remnants of my toenails. But it’s a perception, and all I can do to change perception to be reliably un-intimidating (whatever that looks like).

I mean, it’s nothing like what you’re going through…

People are sometimes afraid to talk to me, especially about wellness-related issues, because they’re afraid that being worried/upset/tired/challenged with their health situation when compared to whatever they perceive I’m going through.

What you don’t see is how that reflects on me. Here are some of the things I hear between the lines when people say things like this:

  • You’re so much sicker/weaker/poorer off than I, so much so it’s only okay to talk about your struggles all the time.
  • You’re never going to take my struggles seriously because yours are so much bigger and more threatening than mine,
  • You are so, so ill that even a simple conversation causes you pain, so instead I will only engage in flighty small talk with you.

I’m sure you get my drift.

Now, this is not an invitation to grill me further the next time I tell you I’m “hanging in there”. Sometimes I really do need a little pushing to open up about things, partially because I find myself telling the same stories over and over again (Baphomet sorta promised me this blog would stop that from happening), and partially because I don’t want to waste the 20 minutes of face time I’m going to get with you at the party/gathering/concert/event to be all about my blood sugar numbers and my O2 sats.
I also have a hard time telling who really wants to hear every single detail about what tests I’ve had and what they’ve shown and who all the “charming players” there are (I not-so-secretly nickname most of my doctors and nurses, especially if there are ones that stand out screaming for one. This trip to JH has given us several – Nurses Anxious, Snake, and Afro; Doctors Bopper, Blondie, and Randomly In Charge; even techs like Pocket Fairy and New Best Friend. In fact, I’ve been asked to come up with a new cast of characters and why they got the nicknames they did, so I’m going to end this post a little prematurely so I can take a break and then tackle that. The next post will also likely have much bigger updates as to what’s going on and why I’m not discharged yet…

….and I just may have found my Zebra hunters. Oh yes, another nickname. The “Zebra” thing comes from an old medical school saying – “When you hear hoofbeats, think horses, not zebras.”

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Darling, Can’t You Hear Me SOS?

August 12, 2014 at 12:42 am (Hospitalizations, Medical, The Journey Towards Diagnosis) (, , , , , )

It’s now been officially a week since I have been admitted to Johns Hopkins. Although Rave and I both had tingly spidey-senses that a hospital trip was close at hand, we had no idea what we were in for.

I have been slow in telling people why I’ve been admitted, primarily because I’m still wrapping my brain around it and the effects it will have on my life going forward.

I have congestive heart failure. Specifically, right sided congestive heart failure, which is the rarer of the two. The doctors believe it was caused by my obstructive and central sleep apneas – a long story about which I am saving for another time.

I am requesting as strongly and seriously as I can that you do not ask questions or offer information (especially anecdotal or third-party info) about the causes, treatments, lifestyle adjustments, etc. THIS REQUEST PERTAINS TO THE INTERNET EVEN MORE SO THAN IN MEAT SPACE. One of the reasons I’ve been hesitant to post about this is because I am really not in a space to hear suggestions from everyone as to what to do next.

My second impetus for this post is more practical. In a perfect world, Rave would be here with me 24/7 until I was discharged. In the past, she’s done her best to attempt it but graciously accepted when she needed other people to step in. This time, things are much more challenging for us both as a unit and as two separate people.

What would be of help is people who could come and spend an entire evening with me (Ernie and Cookie Monsters may be warded against if necessary.). Throwing us a tank of gas (there are better turns of phrase, I’m sure) or helping us obtain parking passes. Specifically making plans to pick Rave up and take her to do de-stressful things. Rave may have some other ideas, and you may come up with ways to help that we didn’t think of.

I’m only going to add this next bit because I feel it’s necessary no matter how many times people have said it is not: Thank you from the bottom of my heart. We both loathe asking for assistance, especially with how generous our tribe has been for us, and we would NOT be asking if we saw many other alternatives.

Here’s the thing – I may be in here for another full week. In fact, that’s on the low end of the spectrum. It’s one of those visits where there is a goal to be met that can’t really be influenced by willpower or any kind of effort.

If you feel you want to help, contact us using our shared email address – delandrave @ gmail . com.

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