She Has Taken Half My Heart

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

arty heart

She Has Taken Half My Heart

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

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

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Difficult Choices

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

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

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

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

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

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

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

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

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

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

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

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

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How to Talk About Pain –

July 16, 2014 at 9:30 pm (Uncategorized)

This is a wonderful article about how we lack the kind of language we have for love, jealousy, and other human experiences, for pain. We have moved away from seeing pain as a spiritual experience as medical science has learned how to dull it past the point of overwhelming sensation (at least some of the time).

What language do you use to describe your pain? Do you use the same words with your doctors as you do with your loved ones or caretakers? Are there works of literature that you feel expresses the kind of pain you experience, or details what it is like to be in acute or chronic pain?

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Fat people and feeding tubes.

May 15, 2014 at 3:26 pm (Uncategorized)

The following is an incredibly well executed essay on how doctors, naturopath, and Internet hoo-has completely misunderstand the role of weight, obesity, and nourishment in fat patients. Long time readers of my blog will hear echoes of things I have written about here, but I appreciate the ability to share someone else’s story, especially when that story took courage and steadfastness to post.


This isn’t a post I like to write.  The idea to write it always comes after someone, who is not communicating with me in good faith, approaches me and makes snide remarks about how I can possibly need a feeding tube if I’m fat.  Except they usually go beyond calling me fat.  They usually make some reference to my weight that makes it sound like I’m unusually fat, just to make things worse.  In one case, a known repeat cyber-bully (he has made threatening phone calls to a friend of mine — if I’d recognized him on sight I’d have deleted his comment unread) even told me he’d lost some relatively minor amount of weight during the course of a disease I don’t even have, and that therefore since I was still fat, clearly I couldn’t have any of the diseases I do have.  It’s clear that most of the…

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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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Meritus Hospital in Hagerstown, MD: The Worst ER I Have Ever Visited

October 19, 2013 at 4:27 pm (Uncategorized) (, , , , , , , , )

I try, when I can, to make the hour drive to Johns Hopkins Hospital when I think I’m having a medical emergency. However, on October 12th, I thought I might be having a heart event of some sort, and realized that I needed to get to the closest ER possible. This meant driving 10 minutes to the Meritus Hospital ER, which turned out to be the worst choice I have made, medically, since having surgery with Dr. WLS.

Over the week prior, I had reoccurring headaches, and increasing pain/weakness in my right arm. On my birthday, October 11th, the pain had become severe, and had spread to the right side of my torso, including over my sternum area. I really didn’t want to go to the hospital on my birthday, and I kept telling myself that it was the “wrong arm” (as, stereotypically, heart events cause pain in the left arm). However, by 3am I was having a hard time taking deep breaths, and the pain in my chest was pretty significant. I woke Rave up and told her I thought I should get checked out, even if it’s just to rule out a heart event. 

I had other reasons to worry: I’ve had a bunch of irregular tests lately when it comes to my blood, my blood pressure, and my doctor was suggesting a statin because my HDL was a little (but only a little) high. My blood sugars have been high regularly, and it had been hard to regulate it because I kept having to go off my Metformin due to CT scans and other tests. (Metformin raises your body’s sensitivity to insulin, which helps a diabetic use less insulin – or none at all – to regular their blood sugar numbers.) And the pain I was feeling was pretty damn severe, especially in my right arm. In fact, the reason it’s taken me this long to write about this is because my right arm is still in severe pain –  7 out of 10 pain on a good day – and my hand and fingers have had some weakness as well, which has made it hard to type at all.

So Rave woke up and we drove down to the Meritus Hospital. I’d been there once before, for what turned out to be a superficial blood clot. I wasn’t very impressed then, but it wasn’t awful.

When we arrived, I was pleased to see that there weren’t many other people in the waiting room. One of my biggest reasons for being hesitant about going to the ER is the fact that often, we have to wait hours upon hours before anything significant happens, and I feel bad that the person who brings me there has to stay up all night (or longer) just so I can find out it’s no big deal. Also, ER waiting rooms tend to fill quickly starting on Friday night and lasting through the weekend, since people can’t call their regular doctors for less emergent stuff – or they wait until the end of the work week to seek treatment, so they don’t have to miss work.

The ER has big signs as you enter that say something like “If you are experiencing CHEST PAIN or SHORTNESS OF BREATH, please inform the registration desk immediately”. Since they were both happening to me, I rolled up to the desk and pointed to the sign and said, “That’s me.” I waited about five minutes before a triage nurse came out and led me directly to a EEG machine to determine if I was having a heart attack right then. Things looked a little abnormal, but not “OMG” abnormal, so they walked me through the rest of triage and then brought me back. 

That was the end of anything that made sense for the rest of my visit.

A doctor came and saw me about 30 minutes after I was brought back, which seemed like a little too long for someone who might be having some sort of heart event. After listening to my lungs and asking me some questions, he decides I need a breathing treatment. I look at him and ask how that would help my heart problem, and he said, “Well, this will help us rule out something like an asthma attack”. “How about the fact that I don’t asthma?” Anyway, we had to wait for a respiratory nurse to come and administer the treatment, maybe another half hour. As soon as I was hooked up to the mask, other nurses came and tried to take me to CT and X Ray, and were told to come back when I was done. The breathing treatment did nothing for me but make me feel high and unfocused, which was not conducive to me answering the hundreds of questions nurses and doctors and techs had for me over the next two hours.

When I told the CT tech that I have had over 20 CTs in the last year, she freaked out a bit. “We usually recommend no more than 6”, she says. So I ask her, “Do you think this CT is absolutely necessary?” …and of course she says, “Yes.” I’ve asked that question every time I am asked to have a CT, and never ever has a doctor said, ‘Oh, well, now that I think of it, maybe we can do something else.”

When I got back, the IV ordeal began. The first tech poked me three times before she gave up, even though I showed her where most phlebotimists have had good success getting a vein. Then the doctor came back with an ultrasound machine, so he could visualize the vein before poking. Even with that, it took him three different tries to get a good line. This did not instill any confidence in me whatsoever. After that, I was given a small amount of pain meds – that did jack shit – and sat waiting for almost two hours. Also, after I witnessed my doctor put the needle in, then reach to a shelf with the same glove (thus contaminating the shelf) in a very habitual manner (which means this has happened before, with other patients), I asked him to change his gloves before he proceeded. In every other medical situation I’ve ever experienced, a request to wash hands or change gloves has been met with immediate compliance and no questioning. This doctor, on the other hand, looked confused and angry, and tried to explain to my why it wasn’t necessary. When I tried to point out how he was wrong, he copped an attitude and stripped the gloves off in a way that clearly communicated “I totally don’t want to do this, and I’m angry you asked”. 

After this, a brand new doctor comes to see me – maybe because of the glove issue, since I saw the first doctor still there. This part is going to make me seem less PC, but I hate doctors who can’t speak English well enough to be understood. This new doctor was some flavor of Asian, and I couldn’t understand her at all. I had to have her repeat herself three or four times, and then I would try to restate what she said to make sure I got it right. I was told I had a PE, or pulmatory embolism, which is a pretty fucking big deal, life and death stuff. She told me I would be admitted for observation and for further testing. I didn’t feel I had a choice, since I had a PE, so I agreed.

One of the big things about Meritus that makes it a bad hospital is that the ER is the nicest part of the hospital. Once you get admitted, you’re shown through hallways and rooms that are old, dirty, not well kept, and feel depressing. Not that I’m usually overjoyed about being in the hospital, but many decorate the rooms so it seems a little less like you’re in a prison. This fact was made sadder when I found out that the hospital had been completely renovated only a few years ago.  I was put on the “observation floor”, and considering how little actual “observation” I recieved, this misnomer should probably be changed.

I was brought a meal I couldn’t eat much of, and then the nurse chastised me for not eating more. When I explained to her I had food sensitivities that made most of this inedible, she told me that she would talk to someone in dietary to come up and discuss better food choices. Not only was it inedible because of my diet, but it was also completely unappetizing. I am pretty sure their miniscule portion of scrambled eggs were from a powder, having eaten my fair share of powdered eggs in my time. The only thing I was given to drink was coffee, which I can’t have because I am sensitive to caffiene. 

During the intake, I was never asked about what meds I take. However, I was grilled at length about every single personal item I had brought with me. From my glasses to my underwear and my wallet to my Nook. I stopped at one point and asked the nurse “Is there a lot of theft in this hospital that makes this necessary?” She looked sheepish and said, “Oh, no, no.” But it did come across as though they were much, much more worried about someone stealing my phone than knowing what meds I take or what medical conditions I have. (Which no one ever asked me except at triage, and that was from a set list, which didn’t include many conditions I have.)

Then I spent hours just sitting around. No tests, no doctor visits, no pain or nausea meds, nothing. Finally, Rave started chasing doctors and nurses down to find out what was going on or to ask if I could have more meds. This is when we both directly observed hospital personnel, on several occasions, sitting around talking amongst themselves about non-medical subjects (at least twice we saw really obvious sexual/romantic flirting going on).

Also, there are signs on the walls everywhere that informs you that personnel have smartphones, but “rest assured they are not being used for personal use, but to enable communication in the hospital”. Although I applaud hospitals experimenting with new tech to facilitate better care, these were the most annoying thing in the world. The problem was not the phones themselves, but that caregivers (at every level, from techs to doctors) would always answer them. No matter if they were in the middle of administering a test (like the CT), or explaining your health status, or while you were trying to explain what you were feeling so they could treat you. It’s like all of the bad habits of smart phone usage in the general public in a condensed form. It was so frustrating.

When I asked about my home med schedule, I was informed that I should take them from my own supply (which I always bring with me to the hospital, but not everyone does). Later on, a nurse or doctor (I was never clear on who was who, since no one introduced themselves to me, ever) flipped out about this, and demanded me to both list every med I took, and that I have Rave bring my med bag home at the first chance. Since they never gave me any of my maintenance meds while I was there, I’m glad we didn’t. It took forever to get any meds from the nurses, and every instance was treated as though I was being totally unreasonable for wanting nausea or pain meds. There are big posters that proclaim that they have a committment to treating pain, but my experience was the exact opposite. And this wasn’t the typical, “Wow Del, you’re on a really high home regimen of pain meds, so we don’t want to give you any more”, because I am on (comparatively) much, much less pain meds than I was a year ago. 

Finally, after waiting over 6 hours for the cardiologist to come (even though the other doctor said everything about my heart looked just fine, which was suspect in itself since I have heart problems they never asked about, like an enlarged heart), having been assuaged that I was next in line at 9am and it was now 3pm, the hospitalist came in and I asked her if there was any reason for me to stay in the hospital if everything looked good. At some point, the fact that I was told I definitely had a PE kinda went away, as no one else had heard this when we asked. Also, the fact that I had been told I was to be given a diruetic since my legs were swollen never happened either. So at this point, I see no effing reason why I needed to stay any longer. The hospitalist actually agreed with me, but asked me to wait a little longer so the cardiologist could sign off on my discharge. 

The hospitalist came back about 3 minutes later and said, “Oh, he won’t be able to get to you for a while, so you can just go home.” She took out my IV and told me she’d be back in a minute with my discharge papers. 10 minutes pass. 20. Then I decided to put on my clothes to make it clear I was leaving. A phlebotomy tech comes in and tells me I need another blood test. I tell her I was told, definitely, that I was only waiting for papers to be discharged. She, very confused, went and talked to the doctor, the exchange of which happened right outside of my door. The phlebotomist was clearly of the attitude that I was just being beligerent, even thought I had been calm and collected (no matter how angry I was at this whole fiasco) when talking to her. The doctor comes in and says, “Oh, you need to do this test before you can be released”. I said, “No. You said I could go home now, and the only thing in the way was getting the discharge papers. I’m holding you to that.” She shrugs and says, “well, we don’t really need it anyway.”

As one last “Fuck you, Del”, as I signed my discharge papers, the nurse pulls out a “Against Medical Advice” (or AMA) document. This is what you have to sign if you leave a hospital when the doctors have clearly told you you shouldn’t. She tries to quickly explain that because I refused to stay for another test, I had to sign myself out AMA. 

“Bullshit.” Was my answer.  I refused to sign. This means that if I ever go back to that hospital, I will be marked as a non-compliant patient, which definitely affects the care you receive. But you couldn’t drag me back there if my life literally depended on it.

There was one moment of levity, though. At one point, a tech came to put on the EEG machine and started using masculine pronouns. The nurse or doctor who came in heard this and tried to correct the tech. The tech looked at me and my only answer was “I chose a gender-neutral name for a reason!” For the rest of the exchange, the tech used male pronouns while the doctor/nurse used female ones. It was amusing.

But not amusing enough to make me ever want to go back there. Or send anyone I care there if they need more than stitches. I will find a better local hospital, or I will endure the drive to JH.



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You’ve got to be kidney me!

August 21, 2013 at 11:10 am (Uncategorized)

Hey, I’m allowed a painful pun, as I am hopped up on the goofballs.

What I mean by that is, I am currently in Johns Hopkins emergency department, waiting for a bed to open up so I can be admitted.

This starts about eight days ago. I started peeing a lot – like 10-15 times an hour – and then the nausea hit. I was getting very little sleep, like 3 or less hours a night. Then my kidneys started to hurt, and I decided it was time to get thee to an ER.

Long story short, they debated admitting me then, due to my history with infections, but decided against it. They gave me a new-to-me antibiotic and antiemetic and turfed me. I mean, I am not a fan of being a patient, but it did muddy the waters some.

I was scheduled to make a work-related trip, 10 hours by car from home. If the docs told me it was no big deal, I could go without worry. If they admitted me, there was little I could do about it. But telling me that the infection *usually* merits a stay, and then setting me free, made things tough. I felt pretty crappy, but this trip was extremely important for both professional and personal reasons. Even so, I was totally looking for some external source to give me permission to cancel. I asked for and received three forms of divination, hoping to be told I could stay home.

In the end, I decided to pray. As the trip was partially in service to two of my most important gods (Loki and Hel), I prayed to them. Send me a sign, a nudge, a way to know what you want. If you want me to go, give me the spoons and energy to get packed and be ready for the trip by the time we need to leave.

The first thing that happened was, I felt an overwhelming urge to shave my head. I had been growing it out for some time and it was actually getting pretty long. But if it were up to Loki, I would be bald all the time. At first, I thought this was him taking advantage of my weakened state, but as the hair started to come off, I realized for the first time how much I felt literally weighed down by my hair. It was stringy and frequently damp from my night sweats. And I wasn’t particularly happy with it.

I also realized right away that my God phone was in much better working order. This helped me understand Hel’s point of view on the matter – that sometimes, you have to choose the riskier path to make life worth living. frequently, I make choices that rock my boat the least.

So even though I had no idea what would happen, I got my shit together and made it to MA in one piece, more or less.

While I was there, I was keenly aware of not feeling well, but had much bigger shit to think about. My wonderful boyfriend and devoted girl did everything within their power to help me get through it.

We knew there was a price to be paid as soon as we set sail for home. My symptoms went haywire. BY Monday, I was puking up my meds again. So after some discussion with some of my doctors – who, by the way, were pretty damn pissed I didn’t get admitted the first time – I limped back to John Hopkins ER.

after a grueling 6 hour wait, I was brought back and immediately shit got real. They’re sure I have a kidney infection but it’s obviously worse than first thought. now they’re doing additional tests, because some of my symptoms aren’t quite what they expected, and now they’re hunting to see if I haven’t developed an abscess on or around my kidney. yeah, that’s what I said.

So here I am, alone in JH ER waiting for a bed to open up so I can be admitted. The plan is, at the least, high test IV antibiotics (since I can’t keep my meds down) and aggressive abscess hunting. The hard part is that I’m alone. Rave spent all available time off to go to MA,and then stayed awake all night with me here. I’m waiting for a friend to come help me – I get confused and distracted in hospitals.

I do. Not. Regret my choice to go. I just, as Winter put it, can’t catch a fucking break.

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A No Good, Very Bad Day

June 14, 2013 at 2:01 am (Uncategorized)

Today was pretty much that – just a no good, very bad day.

I had my first appointment with Johns Hopkins Pain Management department. I don’t remember if I told this story to you yet, faithful readers, so I apologize if this is old news. When I was released from the hospital in April, the Acute Pain team increased my opiates to help with the pretty intense surgical pain I was dealing with – remember, I was going home with a large open wound – and I made it abundantly clear that it was vital that they communicate and get clearance from my pain doctor. They told me they had, and I called his office to verify and was told I was clear to go home. The hospital gave me a week’s worth of meds and I was to follow up with the pain doc right away. Well, when I went to his office, I was informed that no, he had not agreed to this regimen, and he was refusing to write more scripts at that level. I never got to speak to him directly, and was sent home empty handed. I lived on my secret stash of extra meds until I was able to persuade my surgeon to write a month’s worth, to cover me until today.

And keep in mind, when I was released from the hospital, the plan to switch to JH’s pain clinic was already in place. So I stupidly assumed that there wouldn’t be a problem getting, if not the same regimen, a slightly stepped down version now that the wound is closer to healed.

The appointment was made for me without my consultation, and was scheduled during an event I attend every year without fail. I called every week, sometimes twice, in hopes of a cancellation so I could be seen sooner. This did not occur, so I had to limit my attendance of the event to just the weekend, much to my sadness.

I first met with an intake doctor, who got to hear the short version of my six year struggle with chronic pain. It was she who informed me that it was up to the doctor if he would write scripts for anything, and I started having an internal panic attack. I was literally down to my last few pills, having gone through most of my extras waiting for the surgeon. I had not even imagined such an outcome, and would have made different choices if I had known.

The doctor came in, and the highlight was that he was a genuinely nice, engaged doctor. He seemed actively interested in me and what I had to say, which is not a given these days. However, even though his tone of voice was pleasant, he had some pretty terrible things to say.

The biggest surprise is that their pain clinic doesn’t actually prescribe opiates. He informed me that the way they work is in conjunction with a patient’s primary care doctor (PCP); they send the PCP a list of what to prescribe, and the PCP writes the scripts. Their theory is that it is best if the majority of your medications are all prescribed by the same physician, which holds merit. However, since my current PCP had worked to get me into the first pain program I was in specifically because he was uncomfortable writing me a maintenance opiate regimen, I knew this would not end well. They did, in fact, call him and ask if he would play ball, and unsurprisingly he said no. Before they called, they had stressed that I really needed to find a PCP closer to where I live now (I haven’t changed PCPs since the separation), and now I have to.

Tell me: How likely do you think it is, that I can find a new PCP who is a) covered by my insurance, and b) can see me in the next month, and c) is willing to write opiate scripts that are managed by another doctor?

Because that’s exactly what I have to do. He did agree to give me a month’s worth of scripts (including a new med called Mobic, which supposedly potentiates opiates better, and a large increase in my tricyclic), but it was dependant on me committing to making this happen. I even shared with him that I had looked for a local PCP a few months ago, specifically looking for one that participated under the JH umbrella, and none of them had new patient appointments in the next three months, if at all. His assistant did give me a little hope: she said if I find one and the only block is not being able to see me in a timely manner, their office will call and push the issue on my behalf.

If that was the only commitment I had to make in order to get my meds, I would have been stressed but accepting. The next item was a hard swallow, and readers of this blog will totally understand why.

I have to meet with a weight loss specialist; one that he has worked with in the past, at JH.

Now, the upside is that she isn’t a surgeon nor does she advocate WLS. (I reiterated that part of my history, including and stressing the part where at least three neuros have said that the rapid weight loss program Dr. WLS put me on may have caused and/or triggered my chronic illness to start with!) But no amount of hemming and hawing would change his mind: no weight loss doc, no meds. He stressed that she works via physical therapy and “appropriate exercise”, whatever that means, and nutrition counseling. I told him I was already on a antiinflammatory diet that is very healthy, but no dice.

I am not pleased. But a chronically ill pain patient has to do what a chronically ill pain patient has to do, I guess.

As a final fuck you, they wrote my oxycontin prescription with smaller doses of immediate release pills instead of the larger extended release doses, merely because their automatic system didn’t have my dose as an option. So instead of four pills a day, I have to take 12, in two groups of 6, at different times. I am not looking forward to figuring out if I’m actually going to have to set an alarm for the middle of the night to take a pill, or if my metabolism of the med will let me sleep through the night.

I had to race from that appointment to my surgeon’s office on another floor, even though I made it clear to the pain people I had another appointment to make. The surgeon’s appointment was in the last time slot of the day, so there was a chance that if I were too late he’d have left for the day.

I arrived a few minutes late, but I had called them from the pain clinic to let them know I was coming. They told me if I were more than 15 min late, I might be SOL. In hindsight, I should have taken the chance to laugh.

I waited for over an hour to see the surgeon. My companion/driver took the opportunity to run my scripts to the in-house pharmacy. The receptionist hinted that something had gone awry, but gave no details. Finally, I was called back.

The reason I was seeing him is because my home health nurse had a freak out. On Monday, she was measuring the depth of my wound (which she does every time she changes the bandage), and something odd happened. We know it’s been 11cm or thereabout lately, but this time she met resistance after 5 or so. She pushed gently, and something gave way, leaking a large amount of fluid – some of it looked infected. She had originally wanted me to go to the ER, but eventually we agreed that I would make an emergency appointment to see the surgeon instead.

I told him this story. He didn’t even pull the gauze out of my wound, but stuck the cotton-tipped applicator (looks like a super long q-tip) in about 4-5cm, and saw no problem. I tried to explain to him that it was likely he was meeting the same “resistance” that the nurse had, but it was obvious he was rushed. He saw no obvious signs of infection or any other concerns, so he advised me to tell the nurse to make sure she’s getting the sponge all the way into the wound (pushing lightly against any pressure). He asked after my writing, and I told him I had seen a few search hits that used his last name. (I honestly can’t remember if I had used it before or not.) He was surprised that I blogged about him, and told me he’d be googling my name and his to see if he found it. (Hi, there, Dr. Sacks, if you or one of your residents are reading this!)

To add insult to injury, even though they had the scripts for almost two hours (half an hour longer than they had told my companion they’d be ready), I still had to wait for another 30-40 minutes before we could finally leave. All of this waiting meant that we had to negotiate Baltimore’s Inner Harbor on a Orioles’ game day, which is no picnic.

When I got home, Rave had already returned from work. After my companion left, she informed me that the landlord had been to the apartment on Wednesday while I was at a different doctor’s appointment. He had come to fix our hot water pressure, as it was down to a trickle. However, it seems he decided to tour the entire apartment, including both our bedrooms and bathrooms (completely out of the way from the kitchen) and is not pleased with our housekeeping.

Our apartment is disorganized, which we both totally own. We’re still figuring out where everything goes, and there are wound VAC and other medical supplies in boxes in the living room, where the nurse does my bandage changes. However, the important distinction (to me, anyway), is that our place is clean. The carpets had been vacuumed, the kitchen floor had been mopped a few days prior, the dishes were in the dishwasher, etc.

Either this distinction didn’t matter to him, or he is a harsher critic than we, but he had sent Rave an angry email informing her that he considers the state of our place in violation of our lease, which we are going to reread forthwith. He has given us 30 days to straighten up or he will consider the lease broken.

Rave and I came up with a game plan of three parts. I am going to write a very calm and polite letter to the landlord, reminding him that he had been informed prior to the lease signing that one of us is disabled and was just about to have major surgery; there is only so much I can personally do to keep the clutter down to a minimum, and the medical supplies in the living room must stay there in some form or fashion. (I’m not thrilled with the idea of having the nurse work in my bedroom.)

Secondly, Rave, and to what extent I am able, I, will focus our efforts on making things look more organized. He also specifically complained about our garage (calling it a fire hazard), because we have chosen to use it for storage rather than for a car. There is a large, clear walkway from the garage door to the door into the house, but obviously this is not enough. We may have to find a more permanent storage facility to store some of our things in, and/or decide to chuck some of our stuff towards a Goodwill or something (even though we’ve already significantly paired down our belongings, the AEU is much smaller than where we were living before, and we both have a lot of “stuff”, like my lunch box collection, that there just isn’t room for in the house).

The third part of the plan is to eek together enough money for a maid service to come in and do an overall cleaning a day or two before his inspection. Not only does this allow us to focus our limited time and spoons on organization, but if he claims that we fail muster again, we will have some form of proof that we made an effort to make the place cleaner.

This situation is hard for me in a lot of ways. I have some deep triggers around my living space being dirty, which I see as something different from cluttered. I’m not a fan of either, but clutter I give into because I just don’t have enough spoons to care. But Rave cleans both bathrooms once a week unless we’re away for the weekend, we both keep the kitchen counters wiped down and the dishes from getting out of control, and generally we keep surfaces clean because I have a large open wound and a propensity for infection. I am also really not okay with the landlord, who is basically a stranger, poking around in my bedroom. He had to have walked all the way through to look at my bathroom, which means he could also be masking a reaction to the rather large Death altar in there. (Our other altars can pass for curio collections, but the Death altar is pretty blatant.) There was also some…ahem…adult items out in plain view.

But this may be a blessing in disguise. As I wrote in my last essay, we love the layout of the AEU, and the neighborhood is nice and quiet, but neither of us is in love with Hagerstown. It would make my life a million times easier if we lived closer to Baltimore, but we nixed that due to Rave’s commute. Rave hates her job pretty hard, and it looks like the feeling may be somewhat mutual, as they’ve taken her off the floor and out her back in training. It’s also draconian about taking time off, even when it’s been for things like “my partner needs to go to the ER” or “I told you two months ago my partner was having surgery that day”. She really needs a job with a little (not much) more flexibility, and one where her coworkers are at least more polite about not liking her and purposefully excluding her.

So if the landlord decides to be a dick and evict us, it would just give us more reason to take a closer look at Baltimore, and possibly in getting Rave a better job in the bargain. We’re not happy about the possibility of moving again so soon, but if our landlord is going to threaten to evict us over a little clutter, it’s best we learn this now and not, say, when we can’t do anything about it.

So that was my no good, very bad day. Tomorrow, I get to jaunt off to Pagan camp and see most of my Bear family. Of course, my STBX and his new poly family are there too, but these days, that’s the least of my concerns.

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Helpful Things TO Say To Someone in Chronic Pain

May 10, 2013 at 12:35 am (Uncategorized)

A follow up to the other entry I reblogged, a list of suggestions of things that people with the chronic pain actually want to hear.

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Helpful Things TO Say To Someone in Chronic Pain

May 10, 2013 at 12:35 am (Uncategorized)

A follow up to the other entry I reblogged, a list of suggestions of things that people with the chronic pain actually want to hear.

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