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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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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The Magic Number

August 8, 2014 at 2:26 pm (Death and Dying, Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , )

Hey there, dear readers. Before I begin, I want to apologize. When I started this blog, one of the main reasons was so I could share information about my health in a timely manner from a centralized location – so I didn’t have to post to every single social medium and then answer comments from them as well – but this time I didn’t feel ready to blog about coming to Johns Hopkins ER or why I came in. I’m still not ready to write about all of it. But here is a little information, a little navel gazing, and a little update. -Del

A while ago, back in March, I started taking on some serious edemitous weight (what we non-medical types call “water weight”, “edema”, or “swelling”) – one doctor guestimated I had gained 50-70lbs of swelling (and he was pretty close to exactly right). I began seeing a long and complicated list of specialists, each of whom happily pointed to one another as the doctor who could help me tackle this once and for all. I was bounced from cardiologist to infectious disease to primary care to nephrology and around again. I got put on several different combinations of drugs, kept on using the pneumatics when I could, tried to limit my fluid intake, etc, etc, etc.

I will admit, I was feeling pretty defeated. Not only did each doctor think it was definitely a SEP (Someone Else’s Problem), but none of them treated it like a big deal. When I had to buy new shoes 3 sizes larger, I barely got a shrug. To me, my Non-Violet Beauregard impression felt like something pretty hazardous but even when doctors was using scary words like “organ failure” and “amputation” they did it with a resignation usually used about troublesome boys.

After all, the list of symptoms I had –

  • Extreme Fatigue
  • Shortness of Breath
  • Apparent Weight Gain (Swelling)
  • Lack of Appetite/Nausea
  • Sleep Disturbance

– could all (and were) attributed to being obese/sedentary. When I showed my primary doc that I was losing my breath just from standing up and buttoning my pants, we had a ten minute conversation/debate; she was forceful with her opinion that I was decompensating. (Basically, the opposite of ‘getting in shape’.) I kept arguing that even if I was truly decompensating, I was pretty sure it wouldn’t happen that fast and that dramatically.

But all along, everything that popped up she immediately tried to relate to my weight. In fact, when I came back to her after getting the diagnosis “Volume Overload” (Totally my Del Tashlin cover band), she weighed me to confirm that I’ve had a radical weight change – 60ish pounds in 3 months.

But to me, that wasn’t the shock. It was the magic number. I think we all have one. It may not be the same statistic, but there’s a number somewhere in your life that fits the category.

  • “If I ever have to buy my pants at Lane Bryant, just shoot me.” (number implied)
  • The day my scale says 300lbs is the day I lose my shit.”
  • “When I can no longer buy clothes at the mall because I am too big/short/tall/etc, I will have to kill myself.”
  • My cousin’s bra size is a 44G. I’d rob a bank to get a reduction before I would live like that.

There I am, standing on the scale looking at the highest weight I’ve ever been. I’m not seeing the magic number, but I’m very close to it. I take a deep breath and start reminding myself that it is edematous weight, swelling, something that will go away once they figure out what is causing it. Maybe a few tears roll down the side of my face, because it’s a number I wasn’t ready for that day.

As we go back into the exam room, my doc makes a comment about possibly revisiting the weight loss surgery conversation. Anyone who has followed my story from the beginning can probably guess how that conversation went. She’s trying to assure me that just because I had ONE bad experience with ONE doctor should not mean I reject the possibility forever. I am trying to clarify to her that this weight is not “Del ate some extra cheetos and skipped aqua aerobics” weight, but “something is physically wrong with Del that is causing water retention at a ridiculous level”.

I left the appointment feeling pretty sure that my GP wasn’t going to be any further help in this situation. Once again, I’m thinking I might have to go looking for someone new – especially in light of what has happened. In the most obvious application of the metaphor, I came to her with a list of symptoms of a serious medical problem of immediate need of treatment, and what she saw was a fat, lazy person who wasn’t taking care of themselves.

I got so disheartened, I stopped giving a shit. I still took my meds and the like, but I stopped making doctor’s appointments. I lost my fire. Inside I knew that something serious was going on, but it was as if I ran around the village telling everyone the Monsters are Coming and the village reacted with affected apathy. It wasn’t until Rave and I noticed that the swelling was getting markedly worse, and now was happening faster than before, that we decided something had to be done.

Now I am inpatient at Johns Hopkins and I know for certain what all my symptoms were caused by and what the short term plans are to get me going home, at the very least. As I discussed things with Winter last night, he asked me what he and the Clan could do to support me in this time, and I paraphrase for you, dear reader, as well:

I feel like I need some time to wander in the dark, bump into the walls, wack my toe on the moulding. I need permission to let this filter in slowly, rather than jump to branding it on social media for the 140 characters times worth of edification faded into the next cute cat meme. I don’t want to have to educate each and every person I talk to about what it is, how I got it, and how we’re treating it. I just want to sit with this for a while, think about it, run my fingers around the edges and see if there’s a contingency envelope hidden somewhere.

When I’m ready, I will share everything on the blog and you will all know what’s going on. Until then, for now, it’s just mine to feel in all the ways I want to feel it.

(And the good news is, I’ve already lost 15 lbs away from the magic number, so that’s reassuring.)

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A Pain Contract Has Two Sides: A Letter to My Primary Care Physician

April 30, 2014 at 2:53 pm (Chronic Pain, Living With Chronic Illness, Medical) (, , , , , , , , )

Dear (My Primary Care Physician):

I don’t know if you are aware of the struggles I had this week with your office, so I will give you a short summary before I make my point.

My Oxycontin script ran out on Sunday. On the preceding Friday, my partner went to the office to pick up the script as she has done for months. She immediately recognized that the script was incorrect – it was made out for the short-acting oxycodone, rather than oxycodone ER or Oxycontin. She pointed this out to the front desk nurse, who disagreed with her and would not agree to have the script changed. My partner was willing to be wrong, so after 20 minutes of arguing she decided to leave and get the script filled on Monday (which is when the script was dated).

Obviously, we had to wait until Monday to fill the script, so I started going into withdrawal on Sunday night. It robbed me of the very small amount of ability to take care of myself and do the small amount of income-generating work I manage.

Monday, my partner went to 10 – no exaggeration, we can provide a list – of pharmacies, all of which said they didn’t carry that med. As we learned later, this is because the short acting oxycodone does not, in fact, come in a (amount redated)mg pill. However, most pharmacies won’t release any information about opiate scripts; they just tell you they can’t fill them. Finally, a pharamcist saw how harried my partner was and told her that the script was wrong and that’s why no one would fill it.

We had to wait until Tuesday *night* to obtain the corrected script, which was now three days of active withdrawal. The front desk nurse wasn’t at all apologetic, but was actively snide to my partner. When my partner asked for help locating a pharmacy that would fill it (so she wouldn’t have to repeat her wonderful tour of Hagerstown pharmacies) and was denied rudely.

Finally, at 7:30pm, I was able to take my first pill in three days. However, this was less than an hour before I was scheduled for my sleep study. I went anyway, but I am pretty positive the after-effects of withdrawal affected the results.

I see a pain contract as a two-way agreement, perhaps even a compromise. I agree to limit my choices and behaviors in part to protect your DEA licensing and ability to provide other patients with pain medication. In exchange, I am able to access legal medication I have a proven medical need for without shame or guilt. You agree to provide accurate scripts in a timely manner in part to keep me from undergoing physical risk from withdrawal symptoms. Even in the throes of suffering, I stuck to our agreement, not seeking out supplemental sources.

I would really like to find a way to streamline this process so problems like this stop occurring. It seems to me it should be fairly easy to make sure I receive scripts written for the right medication, and for the office personel to be more understanding and compassionate when I or my partner point out a mistake. At the very least, when it is revealed a mistake has been made, an apology rather than further attitude would be more appropriate patient care. Finally, I’d appreciate it if we could find some sort of timing mechanism so when I need a refill the process flows as smoothly as possible.

I am aware I hold few cards here – my options are to continue to deal with your office/practice or tempt fate by going to another doctor/practice. One of the reasons I fell in love with your practice was your ethic of being the main source of care for me, that you were happy to oversee as much of my care as possible before sending me to specialists. I see myself as a faithful patient, and it really pains me to feel like I’m a thorn in someone’s shoe. It seems like such a small issue, but this incident caused me a great deal of suffering as well as losing what little money I’m able to bring in independently. I’m also very worried the sleep study won’t be an accurate reading of my sleep patterns since I was in full-out withdrawal less than an hour before I went.

What can I do to help smooth this process? Are there other solutions or measures you can think of to keep this from happening? Were you aware of these problems?

Thank you for your time and attention to this matter.

Del Tashlin

Edited on May 6th to add:
My doctor replied within a few hours of receipt, offering a handful of solutions. We are going to change how I access my scripts so that I don’t have to wait until my pills are almost out to start the process. She also offered to address the behavior of the front desk staff at their next staff meeting, as well as make sure they are educated on the difference between long-acting and short-acting pain medications as they are indicated on the prescription print out.

So even though we went through a circus to get this month’s pills, hopefully things will be easier in months to come.

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Contemplation and Dedication

December 30, 2013 at 2:18 am (Chronic Pain, Living, Living With Chronic Illness, Mental Health, Spiritual, The Panniculectomy, Uncategorized) (, , , , , , , , , , , , , , , , , , , , , , )

Today will be a year and a day since my ordeal. It has been a very difficult, draining, painful year. I have suffered so many different kinds of loss that I don’t know if I can cleanly separate one from another. They have come at me from every direction, from places I would have never suspected, and in ways that only made any sort of sense in retrospect. I spent a lot of time mourning. This should have surprised me a lot less than it did, having struck a complex and winding deal with Death herself, but I’m still a Fool who bumbles forward ignoring all the big “Dead End” signs along the way.

And then, a few days ago, a very small light was lit. I spoke to Hel directly, and the best way to describe what happened would be that I got my “annual review”. We spoke about times when I truly contemplated in the way She had asked, and times when I did everything I could to avoid said contemplation. She showed me in that transpersonal yet compassionate way how each distraction from my Purpose had been removed. It sometimes felt like a student of meditation getting wacked on the knuckles every time they were obviously not focusing. But I learn the best lessons through pain, both emotional and physical, so it’s not like She was speaking a foreign language.

After we went through the Year of Contemplation, I asked if my failures and misdeeds meant that I had to Contemplate for another year again. “Oh no”, She replies with a slightly amused grin, “It’s not like when a new lesson begins, the old ones end. It just means you are building upon the foundation, and contemplation was the first layer.” Oh yippie skippy.

The next theme came to me slowly. I saw some opportunities start to swirl and manifest around me, and having learned some of my lesson, I wondered if this was a test to see if I would give in to another diversion. As quickly as I could, I went back to Her and asked for clarification. I’ve made enough terrible mistakes already; I was willing to risk being told to figure it out on my own if it meant She might share more insight.

That’s when 2014’s theme was given to me, much in the same way that 2013 was the Year of Contemplation. This year is to be the Year of Dedication. I will still spend much time, likely even more than last year, in spiritual contemplation, but I will also be taking on the responsibilities of sorting out what people/places/things fall within my calling, and which ones only serve as distractions or hidey-holes where I can run away from the difficulties of my station. Some of the plans I have for 2014 have already shown how they are part of my Dedication, and other plans have already been deemed unfit.

I am still sorting out one aspect of Dedication, and I think my confusion is because I really want Her to give me a straight answer, and She wants me to find the right answer on my own. When I first was in preparation for the ordeal, I knew that She wanted some form of oath or promise that would bind me to Her. I had first toyed with the idea of becoming Her consort or spouse, and honestly the reason I didn’t explore that further was because I listened to someone I shouldn’t have who had big stakes in the outcome of that decision. But now I am unfettered (for the most part) and the question lays on the table again. For now, I am offering her my celibacy, which is going to be a very big challenge for me. For I am not only forgoing sexual contact as part of this experiment, but I am also consciously not looking or even really fantasizing about finding a new lover. (Right now, I have a mostly non-sexual relationship with Rave, and a few romantic relationships that are not only long distance, but that I rarely ever see; so the temptation has been present to try to find a new dating situation of some sort.) What I understand as the long term goal of this experiment has less to do with establishing a sexual or romantic relationship with Hel, and more about accepting the reality of my life at 40 years old.

I have tried, more than a few times, to establish a “family”. In some cases, I married or created a partnership with a person whom I felt was able and willing to establish a family unit with, only to have the relationships fall apart and with that, a complete cut-off from their life. Other than that, I have tried starting covens, communal families of choice, and other group dynamics that focused on a long-term familial devotion to one another, but most of them (really, save one) have all eventually given in to entropy. I know this yearning for family is partially due to the instability of my childhood; and that has become even more of an issue with my mother’s passing early in December. I have never met my father’s extended family, and my maternal one has become estranged from me over time. The feeling is even stronger and sadder now that both of my parents are dead; even my brother voiced his concern to me that without my mother, we may all lose touch with each other.

I also have always wanted children. I had the opportunity once when I was much younger, but I opted out thinking that I would someday reach a more stable relationship in which to bring offspring. I have tried, both in the unofficial “hey, let’s just stop using protection” path, as well as with a more formal “let’s track my ovulation and basal body temperature and have sex when things look ripe for it”, and other than a few miscarriages it just never happened. Now I am having unmistakable signs of perimenopause, and I don’t have a fertile partner of the right biological sex in order to give it one last try. And even if I did, my life is just not conducive to the responsibilities inherent in having a child, which is why adoption is not an alternative. My best hopes is to try to remain an active part of my godson’s lives, and accept my childless lot.

It’s a lot to give up. When other people were dreaming of stellar careers and fancy trips, I’ve always had a far simpler vision of what I thought my life would be like. I just wanted a stable family life wherein all of the people involved had made a lifelong commitment to love and respect each other, and work collaboratively in raising some kick-ass children. I never really cared about what I would be doing or how much money we had, just that there were both adults and children in my life and that we had a loving, fun-filled home.

Then again, when I surrendered, first to Loki and later to Hel, I never asked for the family package. In fact, I consider myself lucky that I have been able to have the relationships I have experienced in the last fifteen years, and I have fond memories of all of them, even the ones that ended on bad terms. I know plenty of spirit workers who have been denied the opportunity to have mortal lovers at all, so I know they were a blessing. And there’s nothing written in stone that I won’t be able to have them in the future (yet); it’s just that I need to take this time to dedicate myself to the reality I am in, have been given, and to stop pining and/or trying to create a reality that is not mine to have. So the celibacy is less about not having sex (I am still allowed to masturbate, thank you Hel), and more about letting those dreams slowly rot on Her altar. If I were to take time to find and pursue a new lover, it would very much distract me from that process, and rekindle my hope.

And She has said that this is not forever, and that any changes to that I will have some say in. If Mx. Perfect-for-Del shows up, then part of that perfectness will have to be the understanding that sex is not on the table right away – not that it was with lovers in my past, either – and that my calling as Her shaman-and-sometimes-consort takes a huge precedence over any mortal, any day. It means that the tasks and responsibilities I take on this year as I begin to hone-in on what I am dedicating myself to are very much more important in terms of time, energy, focus, and availability. I will have to be very clear and unrelenting in my communication about what I am able to share with a lover, and if they can’t accept that, it’s better we know that up front, than spend a long time both hoping that things will somehow change.

I know that this year of dedication will be a lot of work. Not only personal work in the same way contemplation was, but also actual “must be awake, alert, and able to engage” types of work. My pain has been bad enough for the last two months that my doctor is very concerned, and I am also showing some early signs that I may have a new abscess. But part of what She wants from me is to find the balance between making time to do the things that allow me to be as functional as possible – like going to doctor’s appointments, seeking out therapies, eating well and getting what exercise I can tolerate, etc – but at the same time, not falling into another dark hole of counterproductive nothingness just because I feel shitty. I don’t know where that balance is quite yet, but I will sure be trying to find it.

I have so many other things to write about – obviously, my mother’s death being one of them – and honesty, I’ve started six or seven different entries and I eventually realize that I’m just not ready to share so openly yet. Another sad consequence of 2013 is that I had to learn to be much more circumspect about what I share online, as I have found more than once, someone using my words, my experiences, my life, etc as a way to attack, belittle, hurt, shame, or punish me. Some of the entries that I have deleted were purely emotional responses to such things, and I know that sort of pettiness does nothing but make me look like a jerk – I know this, because the people who did these things sure looked like jerks when they did it first. Instead, I am taking some time to note important thoughts, feelings, and insights, and when I am able to write from a less tumultuous perspective, I will get back into the swing of things.

But for now…

Hail Hel, Lady of Mercy and Patience.

Hail Hel, Who is as Warm as She is Cold.

Hail Hel, Who Loves Silly Fools Who Take Too Long To Learn.

Hail Hel, Giver of Life and Death in Equal Measure.

Hail Hel, Entropic Transformation.

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Square Pegs

August 23, 2013 at 1:26 pm (Hospitalizations, Medical, Mental Health) (, , , , , )

This is going to be difficult to write. I almost never use trigger headings (warning people about potential upsetting topics), but this post deserves one: Trigger Warning: discussion of sexual assault, abuse of power.

There is also an anatomical image of a vaginal opening further down.

I’ve posted to Facebook my frustration over the way doctors have been tossing potential diagnoses at me left and right. At various points in time, I’ve “had” a kidney infection, an abscess on the kidney, a blood borne infection, another abdominal abscess, kidney stone(s), a pelvic infection, etc, etc.

In the course of this, I am being seen by an intern, Dr. Laing. (I am guessing on the spelling. Please note that I rarely use doctors’ real names on this blog, but for him I am making an exception.) At the time, I do not know that this is only his second day on this rotation (although he’s done it once before). He is a charismatic young doctor who looks like he’d make an excellent background character in a college library or Revenge of the Nerds movie.

Dr. Laing stops in and begins to ask me some sexual history questions. As y’all know, this doesn’t phase me at all. He is vague at first, when I ask him how this could be related to my problem. Then he tells me I am getting a pelvic exam to rule out STIs, and other problems with my magina area.

As someone who has experienced real, documented trauma at the hands of a crappy gynecologist, as well as someone who has psychological issues with strangers mucking with his bits, I start to feel a little panicky. I take a deep breath and start trying to make the situation as comfortable and “safe” as I can.

I start by asking for a female doctor to do the exam. It’s not that I have issues with male GYNs, really. I find informing a female GYN of past trauma translates into a much more compassionate and gentle experience. Dr. Laing says he will look into it; a few minutes later he returns to say he couldn’t find one but that there will be two female nurses in the room. I am unhappy (especially since it felt like he only spent a minute looking for a female gynecologist before giving up) but shake my head and accept that the intern will do my exam.

It helps the story to remember at this time that my chief complaint is severe pain in and around the kidney area on my back and side. Dr. Laing informs me we’re going to do the exam in my room, and I am surprised. I ask why we aren’t going to an exam room with, y’know, stirrups and shit. He assures me it’s going to be quick so there’s no need. He is, in fact, surprised that I am surprised.

I should have known something was going awry when he asked a nurse to get all the necessary tools, and when she arrived with them she had to give him a rundown as to what was there. I had requested he use a pediatric speculum, since we weren’t doing a pap smear or anything requiring more than a glance at my cervix. This, too, he pretends to accommodate, by leaving the room for a minute and returning empty handed. I happen to know that JH has an extensive pediatric unit, and I would bet something large that it has at least one peds speculum.

Finally, I carefully lay down, yelping at the pain in my side. Keep in mind, I hadn’t slept in 3 days because laying down was uncomfortable no matter what position – and he knows this. He decides to use an upturned bedpan to raise my hips a little, which digs into the most painful area on my back.

People are probably wondering why I haven’t refused to continue at this point. Again, I mention that the doctor is very charming, and I am honestly afraid that if I really stand up for myself I will get substandard treatment. Also, it bears mentioning that I have been the victim of sexual assaults, one of them perpetrated by a doctor. So being in this situation has already flipped me out emotionally and so I focused on being physically compliant as I could.

I lay down with the bedpan digging into my lower back. We mess around with the positioning of my legs. I am making a constant stream of pain noises and am trying not to squirm. He informs me we’re going to start with the speculum. This is not the tack I would take with such an exam; those of you who have played with vaginas know that it’s better to start with something small and work your way up, rather than the opposite. I accept my fate with a sigh.

This is when things start going downhill fast. He parts my labia and immediately pushes the speculum against my urethra.

As you can see, that’s like aiming for Manhattan and ending up in Staten Island. They’re connected, but not the same thing. Because I am in a fair amount of pain already, I just flinch away and try to close my legs. He takes this as skittishness and tries to relax me. I am somewhat non-verbal, which is exacerbating the issue. He attempts again, and this time I feel him trying to open the speculum as it is resting painfully on top of my urethra.

I react again, and this time he decides that this isn’t working so he’s going to skip to the manual exam. He says his objective is to palpate my ovaries. I tell him that many GYNs have tried to palpate me in this matter and have been unsuccessful. (My ovaries happen to be hiding in an area of my body with a lot of fat tissue.) He asks me to give it/him a try, so I sigh and nod.

Unshockingly, he takes two fingers and presses them against my urethra. At this point, I say something like, “That’s my urethra you’re trying to penetrate.” He apologizes, withdraws his hand, and then returns to push painfully against my…clitoris. That’s right, this newly minted MD thinks the vaginal opening is above the urethra rather than below it.

Let’s just skip ahead. He fails to palpate my ovariesm (not for lack of trying!), and by the time he’s done I think he knows he’s fucked up. He leaves without saying anything to me, which was good since I was crying. Both nurses who were there were shaking and holding their tongues until he left. It was validating to see and hear that the nurses were as concerned and frustrated as I was. One nurse in particular, who was my assigned nurse, went to great lengths both immediately after, and for the rest of her shift, to comfort me. We sat and talked about our lives, she brought me super secret nurse treats, and she let Rave and I go for a walk for half an hour.

Later that evening, the attending (Dr. Laing’s bosses’ boss) and the resident (Dr. Laing’s boss) came in to hear my story. I stressed that this was not a “OMG gyno exams are hurty” complaint, but a “he really should have known the difference between an urethra and a vaginal vestibule” sort of complaint. It turns out that Dr. Laing assured his attending that he had done several pelvics before; the attending wanted Dr. Laing to have another doctor assist him, but Dr. Laing went rove and did it on his own. The attending assured me that I would not see Laing again, ever, and that the attending would take a special interest in my case.

He also gave me the lowdown on what’s been going on. As I’ve written before, it seems like possible diagnoses are spaghetti strands and I’m the fucking fridge. I might or might not have had or currently have:

  • a kidney infection, otherwise known as pyleonephritis
  • one or more kidney stones
  • an abscess on my kidney
  • a third reoccurance of an abdominal abscess
  • a peritoneal infection
  • an STI or other reproductive issue
  • ovarian cysts
  • any two of these in combination

The attending assured me that we were only looking in two directions now: we can actually see the kidney stone, but it’s resting on the bottom of my kidney where it should hurt the least. However, I’m not acting like a kidney stone patient. Second, there have been a ton of white blood cells in my urine, which screams “INFECTION”; the current thought was that I had an infection of the bladder.

This meant that right after I had come to peace with the pelvic-from-hell, I had to let yet another stranger muck about in my cuntal region (or is that “cuntle”?) and do something painful. I tried to advocate doing it the next morning, but the doctor really wanted the results tout suite. (heh.)

Anyway, back to the conversation with the attending about Dr. Laing. We agreed I would never have to see Dr. Laing or deal with him in the future, and I further pushed that if I saw him again, I would scream and shout. This ultimatum, in addition to a bevy of other complaints, served me well. I haggled over pain meds in my negotiation about the exam for my bladder and won. I decided to push my luck one final time, and asked him for a standing order for a little extra pain meds when I was particularly hurty. (Otherwise, the process is kinda long: I have to complain to a nurse, who then has to call the on-call service doc and explain the situation, and sometimes that doc has to call my actual doc to verify that whatever I’m asking for won’t mess anything up. This can take up to several hours.)

So a few hours later, three very kind but nervous nurses came in to do the straight catheter. See, when you pee in a cup, sometimes you leave behind skin, hair, or other contaminants in there too. Getting a urine sample straight from the source eliminates a lot of that cross contamination. I know I have friends who get cathed for fun, but I am not one of them. Maybe my urethra is too narrow, or I just don’t enjoy penetration in that way. I was shaking the whole time, but my awesomesauce nurse held my hand and told me funny stories fro her life to distract me.

So that was yesterday. Today’s song is in a different key, a different time signature, a different genre.

From what I understand, we have definitively identified the following diagnoses as being accurate and applicable:

  • one kidney stone, resting in the bottom of my kidney
  • an infection, somewhere in my abdomen
  • severe dehydration, and even IV fluids aren’t doing much to fix that
  • severe pain in my right flank, that is very sensitive to touch?

However, I have symptoms that are not explained by any of that. So now comes the oddball testing, starting with an echocardiogram this afternoon. I’ve been assured there were be no more pelvics, though.

I’m trying very hard to ignore the fact that three different phlebotomists have tried to take enough blood for a blood culture and failed. One couldn’t find any veins, so he walked away without playing Bingo! first. The second got a good vein, but it was pushing very slowly and meekly, so they only got enough for the little-bottle tests, not the catheter test (knowing the name would likely help).

I keep trying to explain to my doctors that my medical situation, whether it be short term or permanent (anything in between is more likely), is never black-and-white. Now he can order those wacky tests the hospital wants to try out. My nurse keeps telling me I’m scheduled for an echo (which I’m pretty sure is a heart test) this afternoon.

There has been some upsides: The nurse I had yesterday when all this went down, she and I bonded a lot. We sat and talked about my separation, and my relationship with Rave, and teaching adults about sexuality; she talked about some of her past struggles and what it’s like serving the homeless population in East Baltimore.

Um. There has to be more upsides. I have my own room? (in the dingey, “historic” building) Well, I do like my ID doc – who is actually the boss of the ID doc I am seeing at their clinic. I like the resident and attending of Dr. Laing, who are caring and considerate when touching me. I am pleased that they’re taking my pain seriously, and not dismissing it outright when their theories on what’s causing it don’t pan out.

People have been asking how long I’m going to be here. The only clue I’ve been given is that the attending would be happy if I wasn’t here when he gets back on Sunday. However, some of the tests they are doing today take two to three days to finish, so something tells me I will still be here Sunday. How much longer after that, I have no idea.

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The Jig Is Up

July 20, 2013 at 1:20 am (Chronic Pain, Living With Chronic Illness) (, , , , , , , , , )

This is not the blog post I’m supposed to be writing.

You may have noticed that I haven’t been as active online as usual – less blog post, no inane facebook replies, not even a “like” on a picture on Fetlife. My Gods put a giant smackdown on my head, and until I’m ready to compose This Great Entry that is, mostly, entirely their idea, I’m to keep my nose out of the Internet. I can give short email responses to timely matters if it is necessary, but everything that can wait, will wait.

I got a writ for this entry, because something somewhat major happened today in terms of my health and well being, and well, this blog originally was a way for me to tell large swathes of people about that sort of thing, so here I am.

The title is two-fold: one, “the jig” being my only slightly explained Internet silence, and the second “jig”, well…is frustrating and good in turns.

You may remember that at the end of my last hospitalization, I ended up with some terrible miscommunication between my pain management doc and the hospitalists. By the time I went to the pain doc to get meds, they had decided that they didn’t want to write scripts that matched what the hospitalists had decided, and ushered me out of the office with even less than a “see ya!”, as the doctor only communicated the end of our five-or-six year relationship via a nurse. I was not allowed to speak to him directly, at all.

Luckily, as I was leaving JH, I had asked my surgeon for a referral into JH’s pain management program, so I only had to find a month’s worth of meds until I was seen there; the surgeon begrudgingly supplied these. Then I had my new patient appointment at JH Pain Management, and I decided that Mistress Poppy had it out for me something bad.

At the first appointment, about a month ago, I was told that they would be reducing my opiates slowly over time. This made sense, as they had reached somewhat ridiculous levels when I was discharged from the hospital; however, my assumption was “reducing to a more normal amount”. (More on this later.) I was then informed that I would have to see a weight loss doctor (but not a surgeon, thank something), and agreeing to that was a non-negotiable point. I tried to explain that I had seen several weight loss doctors in my lifetime, and any time I’ve lost a significant amount of weight I have developed more health and pain problems, but it fell on deaf ears. Finally, I was told that the pain management office wouldn’t actually be writing my scripts – they’d give me a month’s worth, but no more – and it was impinged upon me that I had to find a local Primary Care Physician (PCP – what most people think of as “the doctor”) who would write the scripts for me. Oh, the JH Pain docs would still meet with me and decide the dosages and schedule, but the PCP would be actually doing the writing. I was pretty suspicious of this, but I was assured that they have plenty of PCPs who go along with this scheme, and I should have no problem finding one. (I did ask if they had a list of doctors who “played along”, and was denied.)

Well, it doesn’t take a medical genius to see why this is beyond stupid. The DEA doesn’t give a shit who decided how much opiates someone gets, they care about the doctor who actually wrote the scripts. We called over 20 PCPs both in Hagerstown and in Frederick, and of the ones who actually were taking new patients, and could see me before the month’s deadline was up, only one agreed to undertake this unholy arrangement, but when I showed up in his office he, too, decided against it. He referred me to a different pain management doctor, who wouldn’t even take my call after he found out I was already on opiates.

So my drugs ran out. Slowly, as I have learned over many years to skip a dose here and there if you can help it, should something exactly like this happen. I started calling the JH Pain doc’s office about 8 days before the deadline, and got no response from them at all. It was only when my medical advocate demanded to speak to the practice manager that I was finally, begrudgingly, granted an appointment – in a week. So you were spared a week of me posting self-succoring Facebook statuses about how crappy I felt on practically no pain meds whatsoever.

I get to the appointment today and I am pretty bad off.* This is likely how it didn’t hit me right away when my pain doctor lets me know that we’ve – I’m pretty sure this “we” does not include me – have decided to wean me off of opiates entirely, in the span of one month. I was so focused on please gimme something for the pain and the rocking, doc that I’m pretty sure I totally misunderstood him at first.

But no, that’s exactly what he said. And I guess “we” agreed. So although I was lucky to get scripts – this office has a weird habit of constantly reminding you that at no point are they contractually obligated to write a prescription for you, I guess so you feel doubly grateful when they do – I got the most complicated effing scripts in the history of prescriptions. The instructions on each bottle are a paragraph in themselves. Where a normal prescription bottle may say, “Take two pills every eight hours for pain” or whatever, these say, “Take four pills every eight hours for the first week, then two pills every eight hours the second, then two pills in the morning and one at night on the third…”

I had only enough wits about me, after my weaning-off-Fentanyl experience, to splork the words “Ativan” and “Clonodine” – two meds I’ve been given in the past to treat withdrawal symptoms. With the calmest demeanor ever, my JH pain doc explained that he’s “moved away” from prescribing benzodiazapines, although I could feel free to ask my PCP to write for them.** He did, however, agree to the Clonidine, mostly because it’s primarily a blood pressure medicine that no one would ever use recreationally, ever.

If this wasn’t enough for my poor, withdrawal-riddled brain to wrap itself around, I am now on a mysterious “list” for an “in-patient pain program”. I tried to explain that I don’t have the kind of life where I can just hop off to the hospital for an unknown amount of time, but the odd assurance I received was that this wasn’t happening today, as the waiting list is very long. (Of course, this means that not only will I get no notice on when I will be going to the hospital, but that it could be anytime starting tomorrow until 2020.) The concept is actually kinda cool, in a way that unfortunately reminds me too much of a psych admit: they wean you off everything you’re on, then put you in the program and with a team of pain docs, physical therapists, counselors, occupational therapists, and others. Together they figure out a long-term strategy for dealing with your pain. There is some, but not much, focus on what’s actually causing your pain (as most un-Del like people know that sort of thing), but it might lead to some diagnostic testing, at least.

So where does that leave me?

Well, the last time I detoxed from opiates was, oh, the worst thing that ever happened to me physically. It was done over three months instead of one, with the idea of taking very gradual steps. This time, I have 30 days to go from “holy crap I didn’t know they made a pill with that many milligrams” to “here, take some Tylenol”. At least when I did this last time, I had a different opiate at a steady level. What that meant, was that although the withdrawal sucked really bad, my pain was under some modicum of control. Not so this time. By the end of August, I will be taking Mobic, which is an NSAID, and little else. If this past week was any sort of guide to what life will be like on way less medication, not only did my arms and legs hurt so bad that there were times I seriously thought about wetting the bed rather than having to walk to the bathroom, but my still-healing surgical wound burned so deeply I couldn’t eat. (Which I guess helped the first problem in its own way).

There is an upside, even though it is very difficult for me to see now. Many specialists have turned me away, or blamed my symptoms, on the opiates. In fact, the reason the JH pain doc is doing this, even though I’m dubious that it actually applies to me, is valid. His reasoning is that there is a condition called hyperalgia, where your brain gets so used to opiate medication that the medications start causing more pain, and not treating it. As I still get relief from my meds, I am more than a lot skeptical that this actually applies to me, but even if it doesn’t I’m sure my opiate receptors could use a vacation. Most people who need chronic pain meds take a “vacation” now and again, so their tolerance can lower closer to normal people’s. It’s helpful for people like me, who seem to need a lot of surgery, because there does come a time when they just can’t use opiates at all to treat pain, and there’s not a lot of other options. So by taking a “vacation”, I am future-banking a lower tolerance to pain medication, so any future surgeries will not need the amounts that make each nurse, every shift, look at my file and go, “Um, what?”

And honestly, if there is an answer out there for my pain that isn’t opiates, I’m all ears. I’m not a fan of being on them, and going off of them could open up something very important – the ability to drive. I don’t drive for a variety of reasons, but the first and foremost is that if I were ever pulled over and they thought to run a blood test, I’d be a fucking goner. And there are times when I know my reaction time is slowed down from the meds, and I’m infinitely distracted. So resetting the system may allow me to drive my own car, which I haven’t done for many years.

That all being said, I’m still displeased that this was sprung on me when I was actively in withdrawal. If something goes awry – which it can, which is why many people undergo this sort of thing as an inpatient – I could very well argue lack of informed consent. I probably wouldn’t win, unless my judge has experienced what it is like to be in active withdrawal and a ridiculous amount of physical pain, but I don’t think I’d be laughed out of court, either.

It is very likely that between The Entry They Want and the terrible withdrawal and pain I have to look forward to, I’ll either be on the Internet every fucking second I can, bitching about how terrible my life sucks; or you’ll hear from me some time in September.

*Those who know me intimately will attest to this: I have a collection of pill bottles with one pill in them. In the same way that I hate reading the last chapter of a series of books because the world will cease to exist in my head, I hold onto those pills, telling myself that someday it will be that bad and I will be pleased that present-me saved the damn pill for future-me. This week drained every resource I had, and when I told Rave I had thrown out several now-empty pill bottles, the blood drained from her face. She knows how long I’ve stowed away some of these “last resort” meds, and I spent every single one of them this past week.

**You know, the imaginary PCP I’ve found who will play this stupid game. Well, in all honesty, I do have an appointment at the end of August for a PCP whose practice is under the JH umbrella, so there’s a chance this may work out, but not until after I’ve detoxed from my meds.

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Surgery Tomorrow

April 23, 2013 at 11:06 am (Death and Dying, Hospitalizations, Living, Medical, Spiritual, The Panniculectomy) (, , , , , , , , , , , , , , , , , , , , , )

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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Even the Predictable Isn’t.

March 26, 2013 at 5:38 pm (Hospitalizations, Medical, The Panniculectomy) (, , , , , , , , , , , , , , , )

This will be short, as I can still feel the effects of the Versed, Fentanyl, and Morphene in my system. Today I went to JH to get the new drain put in via Interventional Radiology. I’ve had it done twice before, so I wasn’t nervous or worried much; my only fear was that something odd would happen and they’d make me stay at the hospital, as the first two times were done as part of a bigger inpatient stay, and this was supposed to be outpatient.

I whisk through registration, and only wait for about ten minutes before it’s time to go back and gown up. I’m cool as a cucumber, watching some Netflix and joking with the nurses. They come to take me into the procedure room and other than the knowledge that this is going to hurt quite a bit, I’m still doing okay.

The first two times I had this procedure, it was done on an emergency basis, so I wasn’t able to do things like fast and limit my fluid intake. They tell me this time, that could be why the “twilight sedation” didn’t do much for me. The truth is, the first time I wasn’t given much of anything due to my blood pressure being too low; the second, I was given very little. This time, the nurse cooks up a cocktail I can feel; although I didn’t fall asleep (because, well, having a wire shoved into the sorest part of your abdomen isn’t really dreamland material), but I did find myself following trains of thought and being generally spacey. The nurse kept bringing me back to reality by loudly asking me to breath deep breaths; I couldn’t see the stat board, but I assume that even with the oxygen and my CPAP, my pulse ox was dipping. This is common for me when I have to lay flat on my back, which is why I never sleep that way.

When the procedure was over, they wanted me to shimmy from the procedure table to the gurney. I remember distinctly, both times before, being allowed to sit up, come off the table, and then turn around and hop on the gurney. This time, because I had been given much more sedation, they would absolutely positively not allow me to do this (and actually denied that it had ever been done, but whatever). Part of my chronic issue is that my arms and legs are very weak, so between the soreness in my abdomen, the terrible pain in my lower back from having to lay absolutely flat for so long, and the weakness in my limbs, this shimmy plan was not going to happen. So they grabbed some big burly doctor/orderly types, and yanked the sheet with me on it onto the gurney. Let’s leave it at: I cried. It fucking hurt. It hurt my newly punctured abdomen, and it really hurt my screaming lower back. They look at me like I’m an idiot, and without even putting something under my head to support it, they wheel me to post op.

Because of the pain, and that I metabolize sedation super fast, once I was in post op the first thing I asked for was if I could sit up. They bring me a recliner and my back is forever grateful. The nurse starts taking the personal items off of the gurney, notably my cpap machine, which some nurse has graciously packed up for me after the procedure. Except.

See, my CPAP: it’s a machine I use at night that forces air into my throat and lungs in order to bypass any partial or full blockages my epiglottis or other anatomy puts in the way. Sleep apnea is becoming fairly common, and I can name at least ten of my friends who use some sort of apnea device to sleep or who have had surgery because of it. And most machines have a water reserve, since pushing dry-ass air into your mouth and nose all night can be harmful; the machine humidifies the air (great for when I’m sleeping in hotels!), and you can control how little or much humidity is released. However, the big fat honking rule, for what I feel are fairly obvious reasons, is that you have to empty the water chamber before you pack up the CPAP. In case it’s not obvious, failure to do that means that the electronics that make the CPAP work get water all over them, and they think it’s a spring break wet tee shirt contest and stop working.

So I’m in post-op, and the post-op nurse is moving my CPAP case from the gurney to a table in the recovery space. She notices the bag is soaking wet. I groggily try to explain to her that I’m betting the nurse left the water in the chamber, and the machine is now broken. Now, to be fair, this has happened twice before to my particular machine. Since it is often people other than me who pack up my stuff, it’s been packed with water in it before. However, the big difference is, when my friends have mistakenly packed it wet, it was after a full night’s sleep, so there was very little water in the chamber. The nurse in the procedure room had filled it as though I was going to sleep for eight hours, and then only used about an hour’s worth of water.

We plugged it into the wall, and I was right. It tried to start up, but it wouldn’t go.

I don’t think I’ve seen more nurses turn pale white. Fucking up someone’s personal, very expensive, medically necessary machine is, one would guess, one of those things nurses don’t just get away with. All of a sudden, there was a lot of hustling and bustling as they were trying to figure out what to do. Secretly, Rave and I knew that she had an old machine back home, so worse came to worse I could use that, even if it wasn’t set to my specficiations, at least long enough for me to see the doc and get a new one. But even with that in hand, my biggest concern was making sure that from the moment we discovered they were responsible, and there was absolutely no way I had done anything to cause this, that Johns Hopkins was buying me a new effing CPAP. (And what good timing, as mine is old and makes a lot of noise compared to the newer models!)

Then the charge nurse announces that they can’t legally release me until they know I have a CPAP to use that night, and if we couldn’t figure something out, they’d have to put me in a room. No way, I thought. I tell Rave to call my sleep doctor’s office and explain the situation to them, and see if I could get a loaner or something. Johns Hopkins is doing the same thing on their end. I covertly planned that no matter what my doctor’s office actually said, I would tell them I was getting a loaner, and I’d figure out the finanicals later.

But as it turned out, my doc’s office does loan out machines, pretty much indefinitely, if yours is broken. However, it was now 2:15, and the office in Frederick (about an hour away) closes at 4:30. So my discharge goes in fast forward: I’m given some morphine to make the drive home a little less unpleasant. Since I’ve had this sort of drain before, they skip teaching me how to take care of it. They grab me a bunch of supplies, since I need saline flushes for the drain and they’re pretty hard to come by over the Internet; there’s other stuff, but I have most of it at home. And then they even call one of their orderlies to help Rave carry all the stuff back to the Duckbus so we can hurry our way to pick up the loaner.

We get to Frederick with plenty of time to spare, and it takes us all of 20 minutes to get the loaner. I get a phone call from Johns Hopkins Customer Service, as they’re just checking in that I was able to get to my doctor’s in time. I told her I was, and that I would be in touch very soon about how Johns Hopkins plans on fixing this issue. I must have sounded like a bolded statement, even though I was half-asleep from all the meds, because she gave me her personal line and promised that JH would replace the machine as soon as we could figure out all the details.

This is what I get for thinking any procedure involving me would go smoothly and without incident. I’ll be offline for the rest of today and possibly tomorrow recuperating from yet another tap of the Del keg. So far, the draining fluid looks serous, or not infected, so that’s a very good sign.

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Own Your Own Happiness

March 19, 2013 at 12:00 pm (Living, Mental Health) (, , , , , , , , , , , , , , , , , , , , , , , )

Your happiness relies on you. You rely on your happiness. It’s a reciprocal relationship, one where you feed into your happiness bank, and it pays you in dividends. When you are feeling less stressed, more relaxed, more focused, more satisfied with your life, it’s easier to achieve your goals, whatever they may be. If you don’t feed your happiness bank, your life becomes a constant struggle to find a moment of peace, and you get diverted from the things that you want to be doing, in an emergency-like feeling of desperately needing that release.

happiness piggy bank

The problems may start because the people in your life – your lovers, partners, friends, co-workers, clients, employees, etc – also somewhat rely on your happiness. When you’re not feeling sad or stressed, you’re easier to work with, more fun to be around, and more able to give and receive love without hesitation. So it’s in their best interest to try to make you happy, in whatever way they can intuit that. Because it’s hard to ask, and get an honest answer to, the question, “What would make you happier?” And even if you ask it, and get an honest answer, it may be hard to manifest exactly what that person needs.

We all want to nurture the people we care about. It’s an innate feeling, hard to fight. If they are physically harmed, we want to be there with band-aids and antibiotic cream. If they’re suffering from grief, we want to give them a shoulder to cry on and things to distract them. If they’re feeling unloved, we want to give them as much attention and affirmation as we can. And if we’re not careful, two very unhealthy and unfair things result from this.

The first is that we give so much that we aren’t feeding our own banks. Everyone has heard of burnout, but few people are savvy enough to recognize the beginning symptoms, so it gets discovered too late. We spend so much time feeding other people’s banks that we aren’t doing things that make us happy, or only make us happy as a side effect. Even if making other people happy feeds you in some way, if you aren’t getting anything in return – and it’s very hard for sad, depressed, angry, lonely, neglected-feeling people to give much, since they feel empty themselves – then you’re spending what little you have supporting others. This can work in short-term situations, like when your friend loses someone close to them, but in the long term it leads directly to burnout.

The other side of this, the more insidious and dangerous side, is that the other people comes to see you as their sole or primary provider of the happy. If they aren’t taught to find their own happiness, but instead are taught that complaining to others about their bad-feeling feelings results in getting time, attention, support, money, or whatever else makes them happy, they become mice in an experiment, pushing the “happy” button over and over again, addicted in a way, to whatever it is that others have done to make them feel better. They become resentful and angry when you can’t feed them as much as last time, or if you have other things to focus on, or even if you just need a break to refill your own ability to engage.

It’s a trap we all fall into. We see each other on both ends of the spectrum, the one burned out from trying to make everyone happy, and also desperately trying to milk whatever happiness we can get from those who support us. In this cycle, we totally forget that we are able to do both of these things on our own, and in the end, it’s a better and more reliable way to get what you need.

We all suffer

Think of it in terms of money, because it’s an apt analogy. If your friend is unemployed, and you give them enough money to live on (not just an emergency fund to pay a bill or keep them housed), eventually the motivation to get their own job and support themselves starts to evaporate. As you realize that you can’t keep it up long term, and you start to lessen or withdraw your financial support, the friend blames you for not being able to pay their bills, or to buy food. They can’t see past the fact that really, that responsibility was always on their shoulders, and they just chose to rely on someone else rather than their own ingenuity and self-worth to get it done. There’s nothing inherently wrong with taking a break from supporting yourself – whether financially, emotionally, or spiritually – as long as it’s a “break”, and not “a new reality”.

I heard somewhere recently that “depression is the grief that comes from the death of part of you”. That when you realize you have to make a big life change, where something you’ve relied upon for your strength, identity, or survival (or some combination thereof, like a marriage) is over; you go into a state of grief. Sometimes – oftentimes, mayhaps – this starts not when the change actually happens, but when you (consciously or subconsciously) realize that the change needs to happen. I had already phrased this differently, for my own life, as “depression is a sign that you’re afraid to change something.” So when I get sad, angry, lonely, frustrated, or depressed, I look around my life and start to sort out what change I’m resisting or running away from.

running away from home

What makes things difficult and complicated, is that sometimes – oftentimes, mayhaps – the gut reaction is to try to fix or change whatever is making you depressed, rather than facing what it really means. And this is where we start to look to others to feed us; instead of facing the fact that you’ve become radically insecure about your place in the world, and that you need to bone up and face that, work on it, change it into something better, you start to rely on your loved ones and family to make you feel more secure. Again, though, that’s something that’s best only done in an emergency-type situation – if it will keep you from, say, killing yourself or turning to self-harm (alcohol, drugs, cutting, indiscriminate sex, going into debt shopping, etc) – but it’s not the solution. It might feel like it, because in the short term you do actually feel better; but it’s only skin deep. You can’t keep burning people out in hopes that they will fill the hole in your heart; if you can look back and see a trail of dead relationships, well, you know what they say about seeing a problem happen over and over again – it means the problem is you.

OLYMPUS DIGITAL CAMERA

But it’s sounds so easy on paper – make yourself happy. In reality, it’s hard work. Sometimes it sucks, especially in the beginning. You need to figure out what you’ve been doing that keeps you unhappy – staying in a bad relationship, giving too much of yourself away, not focusing on what makes you feel good, etc – and get it under control. That’s where most people resist the hardest – they don’t want to do it. They don’t want to break up a bad relationship, they feel like they can’t, for one reason or another. And we’re fucking talented at creating bullshit reasons why we can’t do something that will severely mess up the status quo. “But this job that pays me shit wages will lead to better things!” exclaims the person who doesn’t have enough money to pay the bills, “And it’s fun, and it doesn’t feel like work to me, and I like the people I work with, and I don’t want to have to take a job that isn’t fun or convenient. So I can’t do it.” Yes you can. It will suck, and you’ll be unhappier in the short term, but when you go to sleep at night knowing that your bills are paid, you have better health insurance, and you don’t have to sweat out the next car repair, you’ll thank yourself. Not only that, but you’ll appreciate the hard work and sacrifice that you made to get to where you are – believe me.

I have faced this sort of thing so many times in my life, I start to wonder if my diagnosis of “Major Depressive Disorder” (having many depressive episodes over a long period of time) isn’t a misdiagnosis of something more simpler – “Afraid of admitting you’ve made a mistake and don’t want step up and fix it.” I’ve made tons of mistakes in my life; maybe more than most people. I had a vision in my head of what I really wanted, but every time I got close to it, I started sacrificing things that were vitally important to my sense of self to attain and maintain it. I married Mike because I wanted something resembling a normal home life – I wanted a husband, and children, and I wanted to feel safe and comforted in that sort of arrangement. Even when it became clear that children weren’t going to just show up on their own, I still clung to this idea that he and I were a family, not a relationship, and you don’t break up with your family, right? So when he emotionally manipulated me, lied to me, cheated on me, lied to my friends, cheated on his other relationships, used money to control and manipulate me, and demanded that I keep up this appearance that everything was okay; I fell into it. I fell so deep that when it came to leaving him, I ended up waiting until he left. Yes, even after I called him on all the bullshit, I was willing to stay and work it out, because you don’t break up with your family. Even after we were separated, I tried to keep him involved in my life in some way, keep him in the role of being my family, and the more he rejected me, the worse I felt.

But anyone who’s been by my side while this has all been going on, can easily tell you that the separation has done miraculous things for me. It has freed me from all of the things Mike was afraid of, namely my transition, but a million other things, too. I was able to reclaim the course of my life, and took power in sitting down and figuring out what was really important to me, because I had learned the long, hard lesson that other people was the wrong answer. I truly believe that’s why Hel did two things in the course of my ordeal – one, she wouldn’t accept other people as a valid reason to allow me to continue living, and two, she declared that I could never make other people my main focus in life.

But things are getting dangerous in that realm of my life, because so many people are trying to get my focus. All of them seem to only want a part of it, but when you add it all together, I can point to many little issues in my life coming directly from this. I have insomnia because often it’s late at night when one or another one of my friends, lovers, clients, etc, think/know that I’m not actively working/writing/doing spirit work, etc (even though often they are very, very wrong) and so they pick 1am as a great time to process what’s going wrong with our relationship. (It doesn’t help that many of my friends/lovers/etc have jobs or lives that allow them to have these conversations at 1am, either.)

...and that has it's own effects on my health and well being.

…and that has it’s own effects on my health and well being.

I get frustrated at myself, because a terrible side effect of this is that even when a person only contacts me once, asking when they might get a piece of my time and attention, I overreact. I react with all the stress, frustration, and unhappiness that has built up from each one of these requests, and there have been many. I also feel like crap, because I should be overjoyed that so many people love me so much that they want my time and attention, and I sound like a privileged brat when I complain about it. “Oh, I’m too popular! I only wish more people didn’t give a shit about me! Woe is me!”, right? It also has the added detriment of making the people asking for my time – probably because they’re lonely, or sad, or depressed, or in some other way feeling negative about themselves or their life – feel even shittier, because I’m complaining about getting exactly what they wish for; people who want to spend time with me.

There have been warnings, too. I’ve had two very clear, verified by outside sources, knocks on the Del skull that other people are starting to take focus away from what the Gods want me to be doing; which right now, that means mostly writing, resting, and contemplation. All three of those things don’t seem like they are as important as spending time with people, nor do people tend to feel bad for interrupting such things. I was ranting the other day, when someone dared hint that maybe working on the book was really my problem, that if I had a regular 9 to 5 job, in an office somewhere, that was going through a crunch time (I have a deadline coming up that I have to meet if I want my first book to come out in June, which is very important to me emotionally as well as financially), no one would dare insinuate or state that I should just stop working and spend more time with my family/friends/lovers. Now yes, if someone was in “crunch time” for, say, a year, I could see advising them to not forget that life exists outside of work. But I only got the book deal three or four weeks ago, and the “request” of spending the year in contemplation three months ago, so it’s not like I’ve been in my hidey hole for too long. I also do go out, although mostly to events, but there’s a social element to those things and it means I’m not just spending my time in front of my computer, getting a severe lack of Vitamin D for lack of seeing the sun.

I even got some outside verification that this current frustration could be a test – whether or not I will bail on my promises to Hel at the first opportunity, and make other people a priority, rather than manage to set clear and unbending boundaries around what Hel and I both want out of what time I have left. It’s not like either of us didn’t expect this; I spent much of 2012 spending time with people, making them my focus, and so like the friend who starts expecting you to pay their bills, I’ve made many people accustomed to getting my time and attention fairly easily.

The deeper lesson here, as I am beginning to realize, is this “happiness bank” analogy. I have a lifelong (even in my childhood) issue of being so afraid of not being liked, of being alone, of not having any friends or lovers, that I go way further than most to make my people happy. I mean, again, look at my last marriage; I stopped myself from doing things I really wanted to, to keep Mike happy. I wanted to change my last name. I wanted to bottom more often. I wanted to start taking testosterone. I wanted to buy more men’s clothing. I wanted to keep my hair short/shaved. I wanted to date other people. These, and so many other things, I deprived myself of because it might make Mike feel the least bit uncomfortable. He was so used to me doing these things, he didn’t even see them. And when I brought them to light, he would blame me for doing these things without being asked. That’s true. He never outright said, “Never bottom in public, it really upsets me and reminds me that you don’t bottom to me anymore.” What he did, was get very sad and withdrawn when I bottomed to someone else. I didn’t like seeing him like that, and didn’t like being around him. Easy answer, right? I fed his happiness bank with a little of my own; I gave up bottoming in public so he would feel better.

But where I seem to be failing in this lesson is that when I take a step back, and try to illustrate to my people (my shorthand for “friends, family, lovers, clients, etc”) that I need them to start feeding their own happiness bank, and stop expecting my weekly direct deposits, they feel like I’m doing something directly to hurt them, or am being mean to them. It feels hurtful for me to ask them to be responsible for their own sense of peace, because I’m taking something away from them. It is hard to stay resolute in that, and stand by my own boundaries, even with the God-threat of losing all of my relationships over my shoulder the whole time, because like every other human, when I see people in pain I want to make them feel better.

I can’t. My happiness bank is currently overdrawn, and I have to fix it now.

What everyone's happiness bank should look like!

What everyone’s happiness bank should look like!

It starts with the most direct and dire situation – I need time to write, edit, re write, and produce the book. It’s not an exercise in ego, this project; it’s a direct line to making more money. I don’t want to get into numbers, but let’s say my alimony is barely enough (and sometimes frankly, not enough) to keep living life the way I have been living it. Events think I’m getting big in my britches when I tell them I can’t afford to pay for my own hotel, but really, it’s because I’m living on about an eighth of the resources I had a year ago. This weekend, I attended an excellent workshop on how to make more money as a presenter, especially how to do it without just demanding that events give you more in terms of compensation, and it wouldn’t be terribly hard to do some of those things. Of course, however, that they require my time and attention. This book is only one step in that direction – of being able to continue doing pastoral care counseling, teaching classes, writing blogs, facilitating ordeals, mentoring, etc – and not charge an arm and a leg to do it. It would be easier on me, and on the world at large, if I can ask many people to give me small amounts of money (paying for a download, buying a book, getting a reading) than it would be to only require my clients to pay me larger amounts of money in order to survive. I can help so many more people if I distribute my financial need among all the people I’ve touched with my words, my actions, my rituals, my classes, etc.

But I need the time, energy, spoons, to set these things up. That’s, understandably, have to come from somewhere.

Like many people who have found themselves in this situation, when I talk to people about this, they’re completely understanding – as long as that time, energy, attention, spoons, etc, doesn’t affect them. Like I have this secret cache of people to whom it’s much easier for me to say “fuck off, I need to do this other stuff.” Clients think I should tell my friends to fuck off. My friends think I should tell events to fuck off. Events think I should tell my lovers to fuck off. My lovers think I should tell everybody else to fuck off. And my Gods?

There’s that scary threat. That I’ll lose it all if I don’t do the Work. And like any good submissive, the prime directive is “take care of the property”, in this case, my life and ability to live.

So instead of writing sixty different emails to people about feeding their own happiness banks, I wanted to write a blog post that might help even more people. Maybe you need to feed your own bank. Maybe you’re burnt out from feeding other people’s banks. Maybe you’re suffering from depression because you’re afraid of the piece of you that has to die in order to make a change.

First of all, this is a universal experience. Every single human being experiences all of these feelings, at different points in their lives. Some people have it harder, especially if they have biochemical predispositions for feeling depressed, insecure, out of control, or in some other way not able to rely solely upon themselves for their own happiness. It is important to reach out to someone who gets paid to help you with that, though – because that’s the reciprocity. That’s why a therapist is better than relying on all your friends; the money makes it worth their time, and they can feed their kids and pay their bills at the end of it. (This weekend, I learned about the “resentment fee”, that is, how much money will it take so I don’t resent you for asking me to do this thing for you? It’s a useful tool for entrepreneurs who are trying to figure out how to price their services.) So if you are scared of the prospect of feeding your own happiness bank, especially if the need feels too great, it might be a good idea to seek out a therapist or other professional to get you on the right path.

Secondly, you need to know what makes you happy, and learn how to achieve those things without anyone else’s assistance. And before you tell me that “being around other people” is one of those things, you can go to a concert. Join a book club. Go to a bar. Throw a party. Do things where you create and control the situation, rather than relying on others. As I recently said, it’s so much nicer and easier for me to make time for other people if I don’t also have to invent the fun thing we’re going to go do. If you ask me out to a dinner and a movie, and you pick the restaurant and the film, I’m so much more likely to feel enthusiastic and willing to futz with my calendar to go; whereas if you just whine “I want more of your time!”, thus dumping the responsibility of finding said time, and then filling it with something more than just staring at each other, which makes it feel onerous and work-like.

wambulance

Take control! Make things that make you happy manifest. Throw your own party, instead of waiting to be invited to one! Go out and meet people, rather than expect your friends to invite you to places where potential new people might be. Put on your big kid pants and if you have to fake the confidence, the self-esteem, the security in your self, your attractiveness, do it. Practice little steps, if you have to. But I promise you, when you feel more in control of our own happiness, you’ll have more love and devotion to pour onto those around you, rather than sucking them dry of theirs.

So if you’re burned out? Say so. Don’t lay the blame at the people who have burned you out, because you chose to feed them as much as you have. It may be difficult to wean them, but in the end it will be worth it. Please remember that taking time for yourself, and solitary activities, is not self-indulgent. It is fucking necessary in order to be healthy and peaceful enough to engage with others without a bad attitude. Read books. Watch documentaries. Write a shitty novel (or a great one, whatever, just don’t pressure yourself about whether it’s good or not), it’s the doing, not the result! Take up a solo hobby by watching videos on You Tube. Make “office hours” – days of the week, hours of the day, that you respond to emails from friends, or take phone calls from them, or in other ways give to others – and make them public if you have to, so people know when you’re willing to engage, and when you’re busy taking care of yourself.

You can do it!

You can do it!

Don’t be afraid to unplug. Many of my friends have been reveling in the feeling of turning off their phones, disengaging from the Internet, not watching television, and then figuring out what to do with their time. We let so many things suck us in, distract us from the real flow of our lives, that sometimes we stop living. Mike was infamous for his “clicky games”, spending hours playing Farmville and online poker, and then complained that I didn’t spend enough time and attention with him. I understand the need for these things to help you relax, but honestly, I find they are usually just as stressful as they are relaxing. Maybe promise yourself two hours a week – a week – where you turn off your phone and disengage from the computer. Tell people if you have to, but sometimes it’s better when you don’t.

Remember that in our age of everything-on-demand, that you don’t owe anyone an immediate response. No matter if they call you, text you, email you, send you a chat, a message on social media, a comment on your blog, whatever; you have never made a promise to respond in a certain amount of time. Teach your friends by example that they shouldn’t expect you to be available to them at every hour of every day. If they complain, ask them what they expect in terms of response time, and then respond with something reasonable, taking the rest of your life into consideration. I had to make the decision that no one – not my mother, not my lovers, nobody – is owed immediate responses. If it’s an emergency, they’ll tell me so, and then I can decide if I can engage with their emergency or not. They have other people they can turn to, and if they don’t, that’s on them.

In the reverse, there’s nothing nicer than getting a message from someone that explicitly says that no response is necessary, or expected, or that I can get to it whenever I have the time. (Just, be truthful about this; if you know you’ll get pissed if you don’t get a response in two months, don’t say you don’t care at all.) So when you send someone something that requires a response, let them know they can take their time with it. After all, I’d much rather receive an answer when my friend is calm, collected, relaxed, and has time to spend on it, rather than a dashed-off, two word response that makes me feel disregarded and bothersome. Decide that quality is more important than quantity, and that you’d rather have a single email a month that was chock full of attention to detail, and interesting information, than six emails a day that are written while they’re simultaneously doing four other things.

short reply

If you’re in a relationship, be brutally honest about how much time you need from another person to feel engaged with them. Even if you’re afraid they’ll tell you they can’t meet it, it’s better to not be in a relationship where you feel hungry all the time, than to be in one where your partner is constantly feeling like they are neglecting you. It creates this terrible loop where no one is happy. And if the person you want can’t give you what you need, you have a decision to make. If you can get supplemental happiness from other sources (namely, yourself, but also other people, things, hobbies, etc), then know that you’ll be expected to feed yourself from those things in perpetuity while the relationship is happening. If you can’t, then no matter how sexy, charming, interesting, or stellar-in-bed they are, you’ll both feel crappy all the time, and it’s better off not to engage. If you’re already in the relationship and realizing that you have vastly different expectations in terms of time and attention, you have to be radically honest with yourself about whether or not you can live what what they give, and if you can’t, then you need to “take care of the property” and walk. Not every break up is about the lack of love or desire; sometimes, incompatibility is more than just liking different kinds of movies or having different hobbies; it can also mean that what you envision a “relationship” as, and what they envision, are too different, and neither of you will be happy. Fuck, read 50 Shades of Gray if you want a good example of what that kind of relationship looks like.

50 shades sucks

Beware of emotional manipulation. It can be really subtle, and most of the time, the person doing it isn’t even aware of it. But a statement like, “Oh, I really want to go with you on the cruise, and I think it would be good for our relationship, but alas, I don’t have the money…if only I could find some…” may sound like an honest statement about one’s financial situation, but it can also be a form of manipulation – implying that if the person wanted good things for the relationship, they’d happily pay your way on the cruise. But that way lies dragons, my friends. Big, ugly, nasty ones that I’ve fought time and time again. It starts out small, but once someone realizes it works, they will continue to do it. Model good behavior by stating your needs and wants in direct statements, rather than wishy-washy emotional ones. “That cruise sounds like fun, but I don’t have the money. Is it possible for you to pay my way?” I had an ex who would come over to hang out, but every time we left the house to do stuff, they wouldn’t tell me they didn’t have their own money until we were there. I remember standing outside of a nightclub, her having gotten all dressed up, driving over there, and only letting us know that she didn’t have the cover until we were on our way inside. It worked, though – for years, we paid her way into everything. I had another ex who, instead of telling us she didn’t have money for food, would just choose not to eat, and make a big dramatic show of it. But it worked; we paid for her food more often than not.

But what did those people also do? They also became exes. Because over time, they kept taking without giving. It’s okay if you don’t have the money once in a while, or if you’re up front when you’re invited – “I’d love to go, but I don’t have the money.” or “I’m coming for a few days, but I need to watch my budget when it comes to ordering food.”

The same goes from time, attention, emotional energy. It’s easy to give time to someone when you don’t have a lot going on. If you are asking me to give up time I need to be working on the book; then when I ask you for time during finals week, you better be ready to give it back. If you know you can’t afford to make that sort of sacrifice, then don’t ask someone else to do it for you.

tally

It’s not like you need to keep a tally of who did what for whom when. It’s more of a feeling. You should feel like spending time with your people is a fun, happy, feeding you sort of thing. It’s okay if once in a while, you decide to spend time with someone else because it makes them happy, even if it’s a little inconvenient for you. But if you see your friend calling, and always press “ignore” because you know phone calls with them inevitably last three hours; if you turn down invitations to things you enjoy because someone will be there who will monopolize your time; if you feel guilty posting about a fun night out with a friend because you know you’ll get five nasty emails asking why you had time for that but not for them; it’s time to take a step back and figure out where the problem(s) are.

At the core of it all, though, the one thing you have completely and utterly within your own control, is your own happiness. If you catch yourself thinking, “If so-and-so would only do things differently, I would be happy”, you need to take a moment and rephrase that. “Why is so-and-so doing things that way, and do I necessarily need to engage with them while they do it?” is a start. But really, the better questions are things like, “Okay, regardless of what my calendar says, what would make me happy this weekend?” “Instead of sitting at home, moping about having nothing to do and no one to do it with, I can be researching groups in my area that do stuff I like, or find a party to attend, or call up some friends I haven’t spoken to in a while.” Ask yourself, “What can I do, all by myself, to make this situation better?” If the answer feels difficult, or emotionally challenging, know that you’ve hit a much deeper hole, and it may take some time and attention to fill it, but you can. In a way, you have to. Because if you aren’t the arbiter of your own happiness, then you’re surrendering a level of control over your life; and you’ll still only have yourself to blame if it isn’t making you happy.

Do it. Make a list, right now, either in the comments, on your own blog, on your Facebook/Twitter/Tumblr, or even just on a piece of paper – five things. Five things that would make your life a little happier. A little less stressful. A little more carefree. And it’s okay if these things aren’t inherently fun in and of themselves – “saving up enough money to pay off the car note” doesn’t sound like a lot of fun, but if not having to worry about getting repossessed will make your life happier, then it’s still worth listing.

Then, hold yourself accountable. Each day, ask yourself what you’ve done to make one of those five things come to fruition. You don’t have to do them all in a day, and I’m sure many of them are actually made up of several microsteps of their own. “I brought leftovers to work for lunch, rather than ordering out, and took that $20 and put it in the ‘pay the car note’ fund.”

..and we all know how I feel about awesome metal lunchboxes, right?

..and we all know how I feel about awesome metal lunchboxes, right?

You, my readers, know that ordinarily, I’d post my own as an example. But in this case, some of them are involve other people, and I don’t feel comfortable posting that. But know that I have my own list, and I’m doing this too. And I welcome emails or messages about this exercise, as long as you understand that until my writing deadline is met, I have a limited amount of time I can spend on email (#3 on my list).

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