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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June 11, 2013 at 2:06 am (Disability, Living, Living With Chronic Illness, Mental Health) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , )

When I think of home
I think of a place where there’s love overflowing
I wish I was home
I wish I was back there with the things I been knowing

Wind that makes the tall trees bend into leaning
Suddenly the snowflakes that fall have a meaning
Sprinklin’ the scene, makes it all clean

Maybe there’s a chance for me to go back there
Now that I have some direction
It would sure be nice to be back home
Where there’s love and affection
And just maybe I can convince time to slow up
Giving me enough time in my life to grow up
Time be my friend, let me start again

Suddenly my world has changed it’s face
But I still know where I’m going
I have had my mind spun around in space
And yet I’ve watched it growing

~”Home”, The Wiz

I’ve been spending a lot of time here in the Apartment at the End of the Universe, as my current health situation requires it. I’m still healing a wound from the inside out, in hopes that by doing so it will create scar tissue where I’ve been developing these abscesses. I’ve been attached to a machine called a Wound VAC, that basically sucks out the fluid from the wound, helping it heal faster and keeping any pockets from forming. I have a nurse who comes to my house three times a week to change the bandage and check the wound, and in order to receive that service I have to remain “homebound” – which has been explained to me as “a state in which leaving the home is very difficult or a major effort”. There’s the practical side of it – the nurse comes here three times a week, so I have to be here for those visits, and can’t make arrangements to get the same service somewhere else (which was the opposite of what I was told in the hospital, but whatever). As I didn’t know that the home nurse could be taken away if I am no longer considered “homebound”, I mentioned to her an upcoming weekend trip, and that’s when I learned that I can’t even discuss with her leaving the house on a regular basis for anything other than a family emergency or somesuch. So I’ve just been having a few “family emergencies” lately.

It is a hard thing for me to accept, this idea that I’ve been classified “housebound”. I mean, I am deeply grateful that the nurse comes here, rather than me having to make arrangements to be driven to the local wound care center three times a week. Right now, my only means of transportation during the “work day” is a woman I pay an hourly wage to drive me places, supported by a few incredibly awesome friends who drive long distances to take me to appointments when my driver cannot. I flat out could not afford to pay to go to the wound care center three times a week; they have a van they could pick me up in, but then I’d have to use either my walker or cane to get around as there would be no one to push my wheelchair around, and the layout of the center would mean a great deal of walking. Walking has become more and more difficult for me, as my legs have been both swollen and very painful to touch, much less walk on. There are days I use my walker just to get around my house, which isn’t very big.

I also have been adapting to living in Hagerstown, which is in western Maryland, not close to either where most of my friends live, or a major urban center. It’s about an hour and forty minutes to Baltimore, and two hours to DC. I don’t have any friends who live close enough or who have open enough schedules to get together to do anything fun; there’s not a whole lot going on in the general area that could be done between the time Rave gets home from work and we go to bed without a significant amount of driving. We really feel like the “…at the End of the Universe” part of our house’s name has turned out to be more true than even we originally thought. We can’t jaunt out to a Tuesday night BR class or a Frederick munch without significant planning. There’s not a whole lot for non-drinking weirdoes to do in Hagerstown outside of going out to eat, which we can’t really afford.

This happens to intersect with a lot of other pondering I’ve been doing about the concept of “home”. The last few weeks, since I’ve been trapped at home a lot (save for a couple of weekend events), I’ve been spending my solitude doing a lot of mental processing about the divorce. It sounds ridiculous, but even though I suspected something was amiss in our relationship for months before the shit hit the fan, I was completely unprepared for the reality of our separation. Added to that, I really expected how he and I would deal with our separation completely differently. He continually swore that he wanted to remain “friends”, that he would uphold his oath to be my “family”, but other than terse emails about logistics (mostly money), he refuses to talk to me at all. I’ve offered to meet him face to face, talk to him on the phone, or even trade emails, but he doesn’t even say “no”, he just refuses to respond. Any time a conversation turns from logistics to anything personal, he cuts off correspondence completely and/or only responds to the parts of the messages he wants to. I find it so ironic, because I would never have guessed that it would be me reaching out and trying to start the reconciliation conversations; I am pretty honest with people that I am very, very rarely (if ever) friendly with my exes. This is not the first time that my partner tells me that they want to be friends with their exes, but then when things end they actively ignore me and pretend I don’t exist unless they absolutely have to deal with it.

I was very hesitant to get married a second time. My first marriage was pretty much a huge disaster, where I suffered emotional and mental abuse, and the relationship-I-call-spousal-even-though-we-never-got-married wasn’t much different, although to be transparent I feel that relationship was bad for both of us in hindsight. I also constantly struggled with my ability to trust my STBX, knowing he had a history of cheating on his partner and not much relationship experience under his belt. But what happened to change my mind had nothing to do with love or romance (especially since neither of us are particularly romantic people). I really had begun to feel that he and I had created a family unit; my love for him was as much familial as it was erotic.

I have a complicated relationship with my birth family. I love my mother and my sister very much, and I talk to them on a semi-regular basis. But that’s about all I have in my corner – I never really met anyone from my father’s extended family, so I don’t have any relationships there, and my maternal family…well, “black sheep” doesn’t even begin to explain how they treat me. I mean, they try to be friendly when we’re forced to be at a family event together, but none of them call me or know anything about my day to day life at all. And this lack is something I have keenly felt for a long time – I have a whole composition notebook I filled with angsty prose and poetry back when I was 24 or so, most of which was directly about my lack of “home”.

One of the terrible things I had taken away from me when I went through my shamanic transition was that the town I grew up in, the only place that really had any nostalgic magic for me, I lost that connection with it. I used to go there from time to time and go to places I used to hang out at when I was a kid, and I would get a sense of deep love and belonging from the place. I could “fill my cup” of having a place that fed my need to have a place I knew intimately, a place where I could find my way around without a GPS or a map or Yelp or anything like that. Where I could speak to the land spirits without much difficulty, on a regular basis, and knew what kinds of offerings they liked and where to leave them. When I left NY for MD, it was like someone went back to my hometown and turned all the spirits away from me; I describe it as “tasting like ash”. It feels like it belongs to someone else, someone I used to know, but isn’t accessible anymore.

When I married Mike, we were also making a commitment to live in Maryland for at least 10 years. We had discussed it at length, considered buying a house and creating roots. Before then, we weren’t sure if we would go back to NY (since we were both natives there) or maybe hang out in MD for a few years, or what. No, we made the considered decision to created family-of-choice ties with our friends and lovers in Maryland. That’s why our wedding was less focused on us declaring love for each other, and much more focused on the concept of “creating a family”. For me, this was so incredibly important and emotionally satisfying, because it gave me something I had been looking for; a sense of “family”, and a sense of “home”.

This year, due to a lot of little and big reasons, I decided that I would start looking for new-to-me events to teach at, and maybe take a break from some events I have attended for many years. So far, it’s been pretty good; but tonight I’m dealing with an unexpected consequence of that decision. Due to the “housebound” stuff, as well as some other medical stuff going on, I am home on this night for the first time in at least seven years. This week is Free Spirit Gathering, a Pagan camping event in Northern Maryland that I have attended since 2003. This is one of those events that I don’t even contemplate when I make a year’s calendar; I just know I’m going to be there. The last few years, I’ve been the department head of their mobility and roving security department, as well as teaching a few classes. It was the first big event I attended after moving to Maryland. I know probably more than 50 people who attend the event, and most of them I consider to be friends, if not family-of-choice. I stay in the same cabin with my Leather family every year, and we all know which beds are for which people. It’s not even discussed or thought about, it just happens.

Over the past month, it became clearer and clearer that I couldn’t go, at least not for the week. I tried very, very hard to change that, because this depressive funk I’ve been stuck in would definitely benefit from being around my family of choice, being in a place/time that feels homey to me. I love the campground where this event takes place, and feel connected to it as many others do. And there is an energy that awakens the land during this particular event that I do not feel when I am there with other groups.

At the same time, many of the things that make the event feel homey were starting to fall apart. My partner Winter decided not to attend; this was the one event we attend together where we spend a lot of time just hanging around each other (rather than running from one thing to another). I understand why he decided not to go, but then we got into a very strange place in our relationship where we stopped talking. I’ve reached out to him and told him I would really like to talk, and, like the STBX, I just get silence. I decided that must mean he needs time to deal with this strangeness, so even though today is his birthday, I decided not to call even though I very, very much wanted to. I feel the lack of our connection deeply; not just the lack of communication, but like I do not matter to the Clan we both belong to – another family I have tried to make my own. I feel like decisions are made without even thinking to let me know, much less asking for my input. I don’t understand where I stand in the structure, so I have decided not to push the issue and just let things happen as they do. But I can’t say I’m happy about it.

My Bear Family, another family-of-choice I love dearly, has also declared that this year is the last that they’ll attend FSG. I completely understand this decision, as the FSG community has been very negative (and at times, downright nasty) to some of us, and it’s just best that we leave places where it’s clear we’re not wanted. However, there isn’t another event that we all attend en masse. In fact, we haven’t all been in the same place since the STBX left us. I don’t know what the future of our family will hold, as we used to have a clearer vision as to who we were and what we wanted to do, but we don’t spend enough social time together to talk about it or actually make anything happen. I’m hoping that maybe, if we mutually decide to skip FSG, that maybe we can all decide to go somewhere (an event or not) together once a year, if not more often, just so we can all hang out together.

So maybe you’re beginning to see why I feel so…divorced…from feeling like I’m at “home”. The place I live in is nice, I love this little house, but it feels so much like a “landing pad”. I don’t want to put down roots here, because I don’t like living so far away from any of my close friends or any semblance of a social life. I’ve been openly thinking about moving to Massachusetts, but I don’t know how I’m going to afford that, or deal with many of the issues that I’d have to settle before I could do that. I’d have to find a completely new medical support system. Granted, I do have a group of friends who live within a two hour radius of each other, so at the very least I wouldn’t feel quite so solitary in the sticks.

I remind myself that this is supposed to be a year of contemplation, and living in a place that feels temporary does contribute to that, as well as being forced to stay home more often. I’m just having a terrible time keeping “contemplation” from becoming “rumination”, where I start to think about all the things that have gone wrong in my life in the past two years and how I ended up where I am now. A lot of my current situation was not by choice at all – I did not choose to move to Hagerstown, it just sorta happened. I did not choose for my STBX to completely cut me out of my life. I did not choose to develop new illnesses that make leaving the house even more difficult than it was before. I did not choose to have my financial situation tank quite this badly. I don’t want to sound like I was just standing there while all these things happened to me, as though I had no control at all; I know that’s not true, but that’s another contemplation/rumination issue again.

So here’s the question, then: Am I meant to have a family? Or is this something I am too much of a monster/non-human to ever achieve? Is anywhere ever going to be “home”? Am I ever going to look at a mountain, a river, an open sky, a horizon and know that this particular place sings to me like no other? Am I ever going to collapse into a bed and really feel 100% comfortable to be myself in that space? What do I need to do to make these things happen? Is it worth it, if I think I don’t have much time left?

I have this (pretty standard) desire to die “at home”. I absolutely do not want to die in a hospital. I want to be somewhere I feel totally comfortable, where I feel loved by both the people and the vaettir of the place, where I can release my attachments in the safe knowledge that the love I feel will go with me to the other side. And what I’ve realized this past month, is that I don’t know where this place is, or who will eventually end up being in that circle. It’s tempting to look at the people I hold close right now and know they’ll be there, but if you asked me eight months ago, I would have given you a much, much different answer than I would today. Nothing is permanent, everything is possible. I’m starting to wonder if I should just embrace the idea of dying alone, so I don’t have to worry about all the drama and heartache that goes into finding these things. I’m so tired of it. I’ve put so much work into making so many families, only to have to leave them in ruins, or be asked to leave as they outgrow me, or find out they never took it as seriously as I did, or whatever. Maybe this is why when I reach out to my ancestral line, I get crickets. I belong to no family, I have no line, I have no home.

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