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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Ten Hard Lessons I’ve Learned About Being Chronically Ill

February 5, 2014 at 1:14 am (Chronic Pain, Disability, Living, Living With Chronic Illness, Medical, Mental Health, Spiritual, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , )

I’ve been struggling with chronic pain and illness for over six years now. In that time, I’ve come to some difficult situations and choices, and for the most part had no source material to turn to. Being without a specific diagnosis means that there are less places to access wisdom by those who have gone before – I read some that share symptoms or challenges with my reality, but even those who have a name for what’s going on find that there are times when your only choice is to struggle through and make the best choices you can. Sometimes we choose wrong; we do something that makes things worse, or we choose a doctor who treats us poorly, or our behavior during times of stress alienates the very people who want to support you the most.

These lessons are by no means definitive, or the only lessons I’ve learned, but instead I’ve chosen these because in hindsight I really wish someone would have given me advice (or even a clue!) in hopes of avoiding some of the inherent pitfalls involved.

10. There is a difference between someone who wants to help you, and those who want to solve your problems.

The people who have been the most supportive in times of difficulty are the ones who chose to assist me specifically so I could do more for myself. The ones who end up burned out and resentful are the ones who chose to do things in hopes of either doing things for me, or doing things with the expectation that things will get better in some form of permanent fashion. I could continually ask people to scratch my back, or someone could buy me a backscratcher. (And here’s where I thank the anonymous person who did exactly that.) You could volunteer to take dictation when I can’t type, or you can help me find dictation software I like or suggest another way of sharing my thoughts (like a podcast). This lesson taught me not only how to tell what a person’s intentions are (to help or to solve), but how to phrase requests in very specific ways so even those who are inclined towards solving end up doing things that make us both feel good. If I know you’re a “solver”, instead of asking for something nebulous (like, “I need a way to move my legs more without causing pain”), I take a little more time and ask for something more specific (“I need one of those cycle bikes that rest on the floor and have a motor, here is a link to a few I like on Amazon.”)

If I’m unsure of what the specific need is, that’s when I turn to the helpers. Because they are focused on supporting my independence as much as they are focused on the challenge at hand, their brainstorming will naturally drive itself towards choices that give me more freedom and less reliance on others.

I’m not saying one is bad and the other is good; I’m saying that in order to lean on my support system without burning everyone out, having a general sense of how someone feels helpful can expand and strengthen your team. Just like you go to Joe when you want to gossip, and choose to go shopping with Pat because they have a style sense that matches your own; knowing who is best qualified to get your through a hurdle makes it easier to ask and receive with the least amount of guilt. Which leads me to…

9. People generally want to help as much as they can; those that won’t or can’t will make themselves known.

It seemed somewhat obvious to list “Asking for help is hard”, because you don’t need to be chronically ill to know that. What I’ve learned about opening myself up to receive help when I need it is that sometimes the “obvious” choice isn’t the right one. One of my people who drive me to doctor’s appointments comes from 3 hours away to do so, usually coming in the night before and leaving that evening. They’ve done this even when my appointment is less than 20 minutes from my house. I have tons of friends who live closer, but many of them have legitimate reasons why they can’t help out. Before I figured this out, I would totally freak out when I thought I knew the absolute “right” person for the job, only to have them decline or just not respond to my requests for help.

Another facet of this lesson is that although it can be downright frightening to be honest about something you need – especially if it requires large amounts of resources like time, money, or commitment – it’s better to be forthright. Even if someone can’t solve the whole problem, they may be able to help you by breaking the ask down to smaller chunks and delegating it to a larger pool of people. It might be difficult for someone to drive to my house, then drive to a doctor’s appointment two hours away, take me home, and then go back to their house. Instead, maybe one person picks you up and drops you off; another gets you at the docs and takes you halfway home, where someone who normally makes that commute can take you the rest of the way. Or if you need to clean house because you’re having a party, instead of asking one person to come the day before and help you out, you can throw a “pre-party meet-and-clean” so your shy friends can both do something helpful and get to know a smaller group of people before the throngs show up.

Before I learned that, though, I would frequently ask not for what I needed, but for what I thought people wouldn’t be offended by when I asked. I had to learn the very hard way that although it might be easier to ask for someone to drop me off somewhere and I’ll just use my walker to get around; if I wake up that morning and my arms aren’t up to the walker, I’m totally screwed unless my friend is physically able to deal with the wheelchair and has the time to stick around for my whole appointment. Or if I needed money to cover some over-the-counter medical stuff, I would sit and agonize over what I “really needed” and what I could “live without” or “make due”. Usually, someone would find out that I was using duct tape to hold bandages on or stealing alcohol wipes from the doctor’s office. They’d sit me down and remind me that people generally want to help, because knowing that their friend is in a bad way makes them feel helpless. Giving them the opportunity to make a difference makes them feel like they’re really doing something.

I also had to learn that there are people who will tell you many times that you can call them anytime if you need anything, but they are only being polite. In fact, I think one of the reasons that chronically ill people usually dismiss vague offers of help like these is because we’ve learned that there’s a good chance they won’t come through. Not necessarily because they don’t care or don’t want to (although there are people who don’t), but because they don’t have the resources or ability to help in the ways you need. You just get to a point where you know asking is a waste of time, even if you think they might be a good choice for one reason or another.

8. If your friend has stopped inviting you to fun group things, it is sometimes okay to check in and ask why.

If you’re wracking your brain to remember what you might have done to offend someone, because all of a sudden you’re no longer “on the list”, it could very well be because you weren’t able to attend enough other events because you didn’t feel well. Or maybe because the place where the party is a fourth-floor walkup. Or maybe because they know you don’t drink and so inviting you to the bar seems mean. And honestly, sometimes they’re worried about reminding you about all the cool stuff your friends are doing that you can’t participate in anymore.

I tend to tell people that these days, I see an invite as a way of saying, “We want you to know you are wanted”. Even if it’s obvious that I can’t participate, just knowing that when they were thinking of the top 25 people they want to go skydiving with, you’re number 23. Sometimes, I use the opportunity to see if some sort of adaptation can be made so I’m included – my friend has an upcoming birthday bash, but her apartment is up several flights of stairs; I asked her if maybe a day-after brunch could happen in a wheelie-friendly restaurant. Done! Other times, people are being too cautious about what I can and can’t do; I might have to bring a chair and take lots of breaks, but I am able to go to the bonfire in the woods given enough time.

7. If you’re feeling left out of fun things, make fun things happen in places and ways you can handle.

There are lots of times when I’ve been home on a weekend night, mooning over all the cool things people on Facebook are claiming to do that I can’t for one reason or another. And it’s not always about health/ability; I might not have the money, or couldn’t find a ride, or required me to RSVP too far in advance. Honestly, it didn’t occur to me right away that the answer was to take charge and plan fun things that were tailored to my needs. Now that I live in a completely-accessible place (thank the Gods!), I have been hosting more stuff. Not only do I know the place is accessible, but if I need a quick breather or if I get a bout of nausea/vertigo/pain/etc, I can duck into my room for a little bit and let my guests entertain themselves. And if I need to check out of the festivities completely, it doesn’t mean everyone has to leave. I just elect someone to take over hosting duties and disappear into the Del Cave.

And if the fun things that I want to do are location specific (like going to the Drive In), I can do my homework to make sure the place is accessible. I can also set up somewhere to be the Temporary Del Cave, whether it be in the car, in a friend’s spare room, or even the handicap stall. I tend not to carpool, so if I need to check out early no one else is inconvenienced (except whomever’s driving). If food is going to be part of the fun, I can call ahead to see if the food on premises is Del-safe; if not, I can usually find a small thing to pick at and bring food to eat on the way home. Even if I am worried that I will have to cancel last minute, I can make sure that people are as invested in doing the fun thing as much as seeing Del at the fun thing, so if I have to back out I know people are still having fun.

Even when I’m at my sickest, I’ve still entertained guests. I just make sure they’re informed up front that I’m not doing well and they should bring things to entertain themselves, or maybe even make plans to go be a tourist or go shopping at the Outlet Mall, so I don’t feel like they’re sitting outside my bedroom door breathlessly waiting for me to feel social again. That way, we both get to spend some time together, and no one feels mislead or guilty if I need a nap. It doesn’t hurt that we have wi fi and an off-brand Roku device, as well as tons of odd books to read. The town we live in has a few cool things to do, and we’re pretty close to places like Gettysburg and Baltimore if you really want to get your tourist on.

6. Needing a lot of down time, alone, can be spiritually enriching.

At first, any time I had bodily-enforced down time, my gut reaction was distraction. What book can I read, what show can I watch, what silly online game can I get lost in? Those are still good stand-by distractions, but when I’m experiencing more down time than up time, it can feel like I’m wasting my life. It only emphasizes all the things I wish I could be doing, or things I expected myself to be doing at this age that have been replaced with this stupid reality I did not want nor asked for. I start slipping down that greased slope towards the maw of depression. Depression brings it’s own symptoms and challenges, and it complicates your health situation that way. I struggled a lot with depression last year, but what became the rope ladder that got me going in the right direction was finding purpose in my rest. I re-started my meditative practice. I found some great online videos of seated yoga, wherein the guide repeatedly tells you that if a pose or stretch is painful, to just breathe and wait for the next one. I began sitting in front of my altars and just letting my mind wander. I began writing for the sake of writing, instead of feeling pressured to cater every word towards a goal – a new post, a new class, a new ritual, etc. I started a personal diary.

The more I found the usefulness in stillness, the more I began to see bodily-enforced down time as something to look forward to. It let me choose to slow down, even if I didn’t have to, which helps keep me from overdoing it. Even if I’m away from home, being able to find a quiet place to sit by myself and just listen to the nature around me can help me enough so I don’t have to run home at the first sign of discomfort.

It also helped me clear out some cobwebs in my Godphone pipeline. Whodathunk it was easier to hear the Gods when you weren’t constantly doing things or thinking things? It also gave me the joy of feeling the presence of my Gods when I didn’t need them; to be able to sit and commune with them without any goal or purpose other than to be. It fills my heart with joy when I have the distinct pleasure of sharing my life with my Gods, even when all I can do is lay in bed and open myself to them. It has definitely strengthened my bond with Hel, who quite enjoys my company and a cup of tea from time to time.

Just finding ways that make stillness productive in its own way, while still being relaxing and stressless, makes me appreciate that my body reminds me to do it from time to time.

5. Be honest, with yourself and with others, about how much time you can spend with them, and how you want to spend that time.

Maybe I’m in the minority, but I would rather have one incredibly long and windy phone call a month than seventy billion text messages a day. Not only do I know it is very likely I can find an hour to commit to said phone call, but it just feeds me better. I see text messages as a tool of necessity – I’ll be there in 20 minutes, Do you know BobJo’s phone number, Are you free for a phone call tomorrow, that sort of thing. This is also why I am rarely signed on to any online chat service. It feels too demanding – answer now or I will ask you sixty times if you’re still there!

It also means that if I’ve just spent a whole weekend with you in person, I can guarantee that I will spend the next week in lots of down time. I value in person time quite a bit, but I’m also content if it only happens once or twice a year. I understand that we all have busier lives now, and the convenience of immediate communication in McNugget sized bites is undeniable, but it just doesn’t feel right for me. I know this paints me as a luddite, and I don’t care. I care so much more about the quality of the time we spend together, doing things that we will remember and that matter to us, than trying to live up to demands of being always accessible and immediately responsive to all of the people who matter to me, all of the time. I am one of a few people I know who not only shuts off my phone from time to time, but I also leave it at home! Aghast, I know! (It may sound a bit crass, but now that both of my parents are dead, I no longer worry about there being an emergency I need to know about right away. I figure there’s nothing I can do about an emergency that can’t be done when I turn my phone back on, or check my email, etc.)

I know that I’ve been shit about answering email, but I’m making a real effort to get better about that. It’s not going to happen overnight, though. I get a lot of email, and the majority of it is the kind that implies a timely and personal response. I am also working on organizing my inbox so messages don’t fade into the abyss that is “the next page”, buried under reminders that Barnes and Noble is having a sale this week. I decided to focus on email because I enjoy exchanging written words with people; and email no longer comes with the expectation of an immediate response (unless it says so). I find that even if someone assumes everyone answers email in 24 hours or less, as long as I send them a thoughtful response that shows I took my time to think about what I wanted to say, I’m usually forgiven.

The point I’m trying to make here, though, is that no one has the right to dictate how you spend your time but you. Obviously, some kinds of relationships will want more time than others, but even then I consider quality over quantity.

4. “Go to the doctors” is not a solution of any sort.

Often, when I write about my symptoms, especially when I am worried about what they might mean, people tell me to see a doctor. On the outside, it makes sense. But the part that makes me want to pull my hair out is when people expect that a single doctor’s visit will somehow provide anything resembling answers. No matter how much information you bring with you, no matter if you write down your symptoms and questions beforehand, no matter if you’re self-educated about your condition or what tests might be necessary to figure out what’s going on, doctor’s appointments are rarely about answers. It only seems to apply if you’ve been seeing a doctor on a regular basis, have limited discussions to a certain subset of your symptoms, and have undergone tests and studies and what have you; then, maybe there might be some sort of resolution like surgery or treatment. 90% of my doctor’s appointments go exactly the same way; I come prepared to discuss my symptoms (including how they are limiting my ability to live life), and the doctor orders tests. The tests come back, and if I win the doctor lottery the first round of tests *might* show something treatable. Most of the time, it’s the beginning of a long road, where you are referred to several specialists, who all start from ground zero (because they don’t rely on prior doctor’s thoughts or opinions).

One of the biggest issues I’ve faced with the “go to the doctors” conundrum is along the way, someone will find an actual problem. In fact, I’m willing to bet that the more doctors you see, the higher the likelyhood that they will find something. This sounds like a positive thing, and in a way it is. It was good to know I had a giant abscess in my abdomen that needed to be removed. But it also meant that for the next ten months, it was the only thing I saw doctors for. Time and money being limited, it meant that I failed to follow up on tests from my neurologist, endocrinologist, and all the other specialists that weren’t related to the abscess. When I finally have the time to go back to these other specialists, I am always chastised for the lapse. Some tell me that I’m obviously not serious about finding treatment, and tell me to see another doctor.

On top of all of that, when I’m brutually honest with a doctor about the time issues involved, they act like they should be my only focus. I had been cleared for an uterine ablation three years ago (and I really need one), but the problem has always been that I have to schedule it four or more months in advance. By the time the surgery rolls around, I’m almost always in the hospital or about to be, for something completely unrelated. I have cancelled four ablation appointments so far. When I tell my OBGYN that the only way this will happen is if I can get it sooner, they act like I am asking for VIP treatment.

Another example: I saw a new neurologist last week, and I’m pretty excited about working with him. But I told him up front that I’m in a time where I can chase tests and make appointments and such, but that time is finite. I already know I have a new abscess growing in my abdomen, and there are a few other medical situations that are getting more serious. I explained to him one of the reasons I haven’t been able to get a diagnosis is because the doctor takes too much time to order and review tests and by then I have something more urgent to attend to. So what did he do? Schedule a test for a month from now, and a follow up two months from now. As I’m seeing my PCP this week about some stuff I am pretty sure will be determined to be more urgent, I might as well not bother.

Even with excellent insurance, there is a financial cost to all of this test chasing and multiple appointments too. I have to have money for gas, parking, and sometimes have to pay my driver. I frequently have to pay a fee so I can get copies of the results for other doctors (although this has gotten better since concentrating most of my specialists and my PCP through Johns Hopkins, since they have an electronic patient folder system where they can see what everyone else is doing). There are other kinds of costs, too, like spoons. I am worth absolutely nothing on a day when I have a doctor’s appointment, and doubly so if there some sort of test. Although Rave helps me a lot, I still spend time making the appointments, finding someone to take me, figuring out what I need to bring, if I need to fast or not eat certain foods, knowing and bringing what I need for comfort, etc. And none of that even covers the times I do all of this only to find out I can’t be seen, or if the machine won’t accomodate me, or if there’s no point to the appointment because the doctor hasn’t received the results yet. It’s ridiculous.

So yeah, when someone suggests I “go see the doctor”? I just laugh quietly to myself.

3. You are the only arbiter of what you put in your body/what you do with your body, and you don’t have to answer to anyone about it.

I can’t even begin to tell you how much shit I’ve been given about choosing to take opiates for pain management. Or about taking antidepressants (even though I take the kind I do because it also helps with nerve pain). Or about not eating healthy food every single minute of every day. Or about having an alcoholic drink (a single one) once every six months or so. Or about which supplements/vitamins/homeopathic remedies I should or should not be taking. Or people sending me articles about new medicines or treatments with the expectation that I will immediately talk to my doctor about it. And as those who have read the rules of this blog already know, I get tons and tons of people recommending alternative therapies, from yoga to acupuncture or reiki to magnets.

It can be difficult, because most of these people are legitimately concerned about your health and well being. They’re not trying to be obnoxious or naive. It is something they can do that makes them feel helpful. And oftentimes, they actually do know someone personally who has benefited from these choices in some way.

My decision has always been about quality of life over quantity of life. When I found myself breaking down into tears because the restrictive diet I agreed to try denied me the pleasure of having ice cream when I wanted it, (and this may sound juvenile but it is absolutely true) that I didn’t want to live if it meant I couldn’t gain what little comfort I can. I have been weaned off of opiates, and my quality of life went to zero (and doctors made the decision to put me back on, and chided me for agreeing to go off in the first place). I’ve tried to be open minded about alternative therapies, but especially now that I’m on a fixed income, I don’t have a ton of money I can invest in something that only has a small chance of making a difference. I can’t afford to shop in exclusive, trendy supermarkets in order to stick to a nutrition plan, especially if I don’t like what I do get to eat.

I make choices that don’t take my health into consideration. Everyone does. Whether it’s opting to forgo an exercise regimen, or getting tattoos when it may increase your chance of infection, or eating something knowing full well your body will hate you for it tomorrow,  or skipping a meal every day in order to fit into that killer dress this weekend, it’s not hard to find examples of people making personal choices about how they treat their bodies that we might not agree with. Just because I am chronically ill does not mean I surrender the same right. I have to pay the same piper everyone else does. A life that is devoid of pleasure, comfort, and the occasional indulgence is practically inhumane, in my honest opinion.

3. If all you talk/write about is being sick, then the only thing people will know about you is that you’re sick.

Being chronically ill or in chronic pain is a very lonely thing. It is full of complex emotions and challenging moments that one really needs social support to endure. It can be liberating to express your inner dialog – your fears, your frustrations, your sadness, your oddly funny moments – so people might better understand what it’s like. It can help when your words encourage others to share similar stories, or even just leave a “I feel that way too” comment on something you wrote in a moment of despair. I would never, ever discourage someone from finding ways to communicate their struggle that ultimately help them face their illness with more resolve.

But before I started my second blog, most of my friends and acquaintances used this blog as their sole source for keeping in touch with me. As I consider this a blog – a place where I have a general topic and all of my writing ties into that topic in some way – everything I shared related in some way to either my personal experiences being chronically ill, or my insights about chronic illness and spirituality and the intersection thereof. However, many of those friends thought this was more like a journal – an accounting of my day to day life experiences – they began to think that I was consumed by illness and did nothing but go to doctor’s appointments and sit at home in pain. They didn’t call or write or visit because they were afraid to impose themselves, what with me being sick and all. I even had some professional issues because of this blog, where people refused to hire me or offered me smaller contracts so as to not overtax me. I realized that the blog had become a real issue, and I had to do something to remind people that I am still a dynamic, passionate, and lively person who has a lot of life to live yet. One of the solutions was to start Sex, Gods, and Rock Starsand take some time to promote it and build a following of folks who were only reading this blog because it was my sole expression online. It has been a real challenge, as making sure I am writing enough to keep both projects worthwhile (and to fulfill the Purposes for both – including my spiritual agreements about them). Sometimes I write more here, and sometimes there, and sometimes neither site gets updated for a while. But in the end, it has helped tremendously in creating a more realistic image of who I am as a well rounded and vital person who happens to also have chronic pain/disabilities.

2. It takes time to accept that the likely hood of “getting better” is not that great; not only do you need to accept it, but those closest to you need to, too.

Obviously, this is not applicable to every chronically ill person in the whole world; you may have relapsing-remitting MS where there will be periods of time where you feel pretty healthy. Or in a year from now, scientists will make a big discovery about your illness and there may be better treatments or even a cure. It’s possible that after years of not knowing what was making you feel so poorly, the right doctor will stumble onto a diagnosis that has known treatments to alleviate your suffering.

But for me, I’ve radically accepted that I don’t know what tomorrow will bring. At the same time, I have no delusions that it will take one thing to completely treat my suffering and sickness. Even if I got a diagnosis, the chances of it being something curable are pretty slim at this point – I’ve been tested for most of that stuff already. When those closest to me string their hopes on a someday cure, it makes me feel like they are not only ignoring the present but that they aren’t paying real attention to my journey thus far. There’s optimism, and there’s self-delusion. I’m optimistic that someday doctors will know why I feel sick/pain that may lead to more targeted treatments, but I also accept that if that happens some of those treatments are things I’m already doing (like pain management) and others will almost definitely take time before they work. I mean, knowing you have cancer doesn’t mean that in a week you’ll be completely cured.

I need people who can dig in and see the reality of today alongside me. I can really only deal with this in small chunks – maybe not quite “one day at a time”, but close – and if all you want to talk about is some nebulous future, I can’t relate to that at all. Deep inside of that optimism, too, there are crunchy bits of judgement (if you only took this more seriously, you’d already have a diagnosis/treatment) and denial (it’s not possible to have these symptoms and there be no singular cause). I have lost important people in my life because they failed to accept the reality of what is, rather than keep their eyes shut tight, hoping for the pipe dream of tomorrow.

It also subtly communicates that the lack of a panacea is my fault – I’m not choosing the right doctors, getting the right tests, chasing the right diagnoses, talking about the right symptoms, etc.

One of the relationships I had to end because of this kind of thinking was my therapist. I sought him out to be someone I could work through my feelings about my medical situation with, but by the fifth session he was so frustrated that my doctors had failed to diagnose my “obvious case of MS” that I had to ask him to stop yelling. The next few sessions comprised of me gently encouraging him to be patient with the process, and when I finally realized I had become his therapist, I ended the relationship.

1. Do whatever you have to do to survive. 

I mean this literally and figuratively. Even if you hate taking daily medication (or in my case, testing my blood sugar four times a day), if it makes your life an easier place to live, it’s worth it. If you are starting to hate or mistrust your doctor, get a new one. Ending relationships that only complicate your life and cause you more stress and pain may be difficult, but if it will eventually make it easier to get through the day, do it. Taking a break from seeing doctors because you need to save the money you usually use for co-pays in order to pay rent/buy food/pay bills can be a legitimate decision. Telling your doctor that a medication is on your insurance’s third tier (the most expensive one) and that you need a less expensive option is completely understandable. Finding plans or cards from pharmaceutical companies that will net you discounts on your meds might make your doctor sigh because OMG paperwork, but ignore their huffing and bring it anyway. Asking your friends to remind you of cool memories so you can read them when you’re in despair is not selfish or self-centered. Saying “no” to a doctor is always an option. So is “I want a second (or third, fourth, fifth) opinion”. Refusing to settle for a physician’s assistant and wanting to see the MD in your doc’s office makes sense if you’re medically complicated. Late night trips to the ER because you are in excruciating pain, or having a symptom that is scaring you (like chest pains or not being able to take a full breath) are not wasteful.

Don’t let anyone ever make you feel bad for making the best choices you could, given your resources and knowledge. 

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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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Am I Lying?

May 8, 2013 at 7:14 pm (Chronic Pain, Disability, Hospitalizations, Living, Living With Chronic Illness, Mental Health, The Journey Towards Diagnosis) (, , , , , , , , , , , , , , , , , , , , , , , , , , , )

It’s been a difficult time. This past trip to Johns Hopkins has left me running on very low energy. There’s been a lot of sleeping, a lot of powering down, a lot of what I call “spoon banking”, times where I purposefully go into low energy mode because I have a lot of high energy commitments coming up, and I want to feel as good as I can when they happen. I’m looking at one of them this weekend, going to an event I’m kinda nervous about for a lot of reasons.

It’s been hard. The wound VAC experience hasn’t been as wonderful as no one told me it would. Basically, to be a little graphic, three times a week a nurse comes to my house to rip out foam that’s been stuck inside my wound, under negative pressure, which has partially adhesed to the wound. It hurts, each and every time, and it was only my mentioning that they used lidocaine when I was in the hospital that the nurse even thought of it.

I’ve started many blog posts, both for here and my other blog, but none of them have grown into anything worth posting. I usually only have a few paragraphs in me before I start to fade, or when all the drugs I’m on kick in and I get all fuzzy and it becomes very hard to focus. I know that people are interested in what’s been going on, have been waiting to hear how I’m feeling and how I’m recovering, but I don’t know how to make a meaningful post out of ‘Ow, sleepy, more ow, more sleepy.”

But even when I’m not actively blogging on a regular basis, I still do check in with WordPress. I read some of the other blogs I subscribe to. If I feel like I need a kick in the pants, sometimes I took at my stats. Mostly I just look at the numbers as they slowly decrease – and that makes sense, as less people read my blog when I’m not writing anything – but I also enjoy reading the search terms, the phrases that people put into search engines that lead them to my blog. Most of the time I find them either educational (I may actually write more about my experiences about both panniculectomies and hernia repairs, as many people come here looking for information about them), or humorous. My most favorite of all time is “If I eat a crow, will I get sick?”, which I assume lead the person to my post about going gluten free.

This week, however, I had a search term that made me ponder. I read it, and it made me think. It said, very simply, “Is Del Tashlin lying?” (I added the capitalization to my name.)

I am not as surprised as you might think I am. I have detractors, and I’ve written about them before. I’ve always been the kind of person that people either really like or really hate; very few people meet me and think, “eh, whatever”. I never delude myself into thinking that there aren’t people out there who have had extremely bad experiences at my hands, or reading my words, or being a part of my life. I know I’ve hurt people, I’ve alienated them, I’ve done or said something that made them think I’m a terrible person.

I honestly believe that’s true of just about anyone. In fact, sometimes it’s easier to find people who think a specific person is a terrible, awful human being, than it is to find someone to stand up for them and speak to their strengths.

When I first met the now STBX, I asked around about him. I didn’t know him very well, and we didn’t have any friends in common, so I was hoping to find someone I could trust who would calm my fears about dating someone so far outside of my social circle. And as the story goes, he had a few friends who I knew tangentially through others (gamer geek circles tend to overlap) who told me he was a stand-up fellow, and I decided to date him. He even admitted to me on our first real “date” that he had cheated on his first wife. I took that to mean that he was willing to be honest with me about both his strengths and his weaknesses, and that was attractive to me. I admire someone who is willing to offer up a full picture of who they are when you’re starting to get to know them. Usually, we’re too busy trying to put our best foot forward, to look as attractive as we can, in hopes of roping the suckers in. It meant a lot to me that he was so honest. It gave me hope.

And before we jump to the end of the story, there was definitely a middle. There was struggles and successes. I refuse to lock all of my good and uplifting memories of our relationship into a box and only focus on how things ended. I am doing everything within my power to continue to see him as I did in the beginning; someone who is neither all-bad or all-good, but a complicated person with as many successes as failures in his life.

In that vein, I’ve asked my lovers, family, and others close to me to keep their thoughts and feelings about the separation to themselves. I have asked them to be civil with him and his new family when they find themselves in social situations with them. Even though many of them are as hurt as I am, feel personally betrayed by the whole situation, because they bought into much of what they saw and felt about him as being not just a good partner for me, but a good person in general. But I think part of what makes that complicated, is that we all try hard to see our friends and family-of-choice as being generally good people. We try to downplay the parts of them that we don’t agree with, or aren’t as pretty or good or civil. How many times have you been in a relationship where you’ve done something to hide your partner’s lesser qualities? I think we’ve all been there, whether it was me explaining away the rampant anti-social behavior of my first husband, making excuses for the anti-semitism of another lover, the untreated alcoholism of yet someone else, etc. I don’t claim to be perfect, and I don’t date perfect people either.

In fact, when I fall in love with someone, I try as best I can to fall in love with their weaknesses, their imperfections, the things that most people would see as negative. I don’t go rooting around looking for them – I know they’ll show their face in good time – but when they become apparent, I open my heart even harder and tell myself that if I’m really in love with this person, I’m in love with all of them – even the parts that embarrass me, or that aren’t socially acceptable, or the parts they hate the most.

Sometimes this can be healing: I’ve loved many people’s bodies when the owner of that body couldn’t. I’ve loved people’s fight with their sexual orientation or gender identity. I’ve loved them as they made choices that would turn out to be bad for them, or bad for both of us. I strive to love beyond just the good parts, the hidden parts; to me, that’s the ground where real intimacy lies. When you can look into someone’s inner monsters and tell them they are loved.

How does any of this have to do with whether or not I’m a liar?

I used to be a really big liar. Growing up, lying was like breathing. I remember telling kids in the new school I found myself in, 4th grade, that I had a metal implant in my leg. Whenever I felt ignored or left out of something, I would go to one of them I had spun this tale to, and would say something like, “My ‘ML’ hurts!” and they would immediately leave whatever they were doing to spend time with me.

I find that story funny now, for somewhat obvious reasons. Now a days, I am terrified to talk about the depth and breadth of my disability, specifically for many of the reasons that I lied about it when I was 11. I don’t want people to be my friend out of pity. I don’t want people to stay away from me because my chronic illness makes being my friend/lover more difficult. I don’t want to shake the “I’m in the hospital” banner too often, lest it start to feel like a child crying “wolf”, and not being able to rally support when I really need it.

I also had to face a big challenge from Loki during my shamanic crisis. One of the things He demanded from me was that I never lie. I can bend the truth, I can embellish for storytelling purposes, I can avoid talking about something or omit details: some people see these things as equitable to outright lying. And maybe it is. But the promise I made was that I would never say something that was out-and-out untrue.

I am not perfect. When I am upset, especially when I am in an argument, I am apt to say whatever comes to mind in the moment, including things that are said merely to wound the person hearing them. Frequently, these things are untrue. In the moment, I find it extremely difficult to hold back from doing that; my passion takes over and my desire to hurt the person who is hurting me takes over. I hate it, it’s a part of me that I see as imperfect, a part of me I would hide from people if I could.

I sometimes know what I have to say in order to get a certain response. People who see me in the hospital sometimes comment that maybe the reason I run into problems with pain management is because I can look at a doctor and calmly tell them I’m in 9 out of 10 pain. I’m not crying, or rocking back and forth, or breaking down. I can be emotional about some things, but pain is no longer one of them. I deal with pain so often, almost always, that it is totally possible for me to truly be in excruciating pain and still have a calm demeanor. With these new bandage changes, I would be completely wrecked every other day if I let the pain take me to such an emotionally rendered place. I need to stay stoic so I can get up, go on living my life. If I let all the pain I feel all the time control my emotional state, I would very likely never get anything done ever, and would spend every single day in bed falling apart.

That’s part of what has made the last two weeks especially difficult for me. I’m not far from that. The bandage changes are Monday/Wednesday/Friday, first thing in the morning, and I find that at least for now, those days are basically “survival” days. I’m happy if I do more than just watch streaming video and use the bathroom those days – feeding myself is a victory. This weekend will be a test, to see if I can heal enough from Friday’s change that by Saturday, I can have a little fun and teach some classes. I’m totally up for the challenge, and I have to be: sometimes wound VAC treatments can last more than three or four months, and I have a very deep, very big wound. On the brighter side, I am showing some small signs of healing already, but it’s not going to be a short journey. I will be working in and through this for a long time, and I know that I am going to have to start making those days more productive if I’m going to get through this mentally.

I understand that I could choose to take more time off, to decide that this isn’t going to get any better and just close myself down until the wound is better. The problem is? I just did that, from August to February. I don’t want to do that anymore. I have a strong emotional and mental need to get out of the house, to get back to a semblance of a normal life, or as much of one as I can handle. I know I can’t be a superhero all the time, and that I will have to make choices all along the way to remind myself that I’m still not “well”, whatever that means these days. But I refuse to just sit in my house and feel sorry for myself and my pain for a year or longer. Seven months was enough.

I also accept that this is the new normal. I know a lot of people use the idea that “someday things will get better” as a way to keep their spirits up and hope alive. I have learned, through the last year’s experiences, that saying that to myself is lying. I struggled in my marriage to remind my spouse that there was no magical day coming when I would no longer have chronic pain/illness/disability, that there was no magic doctor out there waiting to give me a magic diagnosis that was going to fix everything. To me, where I am in the process, that sounds about as realistic as winning the lottery and marrying royalty and living in luxury for the rest of my life. I know that’s not my road, I know it in my bones, and I refuse to let anyone around me live in that illusion, so I have to start with myself.

I have to accept each moment as it is, not as I hope it could be, or how it might be someday. I have to accept that even if the wound VAC does what it’s supposed to and keep me from getting any more abscesses, it doesn’t mean that I won’t still have chronic pain, worsening diabetes, diminishing mobility, etc.

When I was in the hospital this last time, someone I’ve been kinda sorta flirting with came to see me. That was a big deal to me, because I still struggle with being completely open with potential lovers about the reality of my health situation. My STBX really made me gunshy about that; I don’t want to feel like I’ve sold someone a bad bill of goods by convincing them I am more healthy/painfree than I reall am, but at the same time, I don’t want them to think that every single day of being in a relationship with me will be about doctors and hospitals  and medical devices. It was hard for me to have my crush there, but it was also important. I needed to know that they understood that this is an integral part of my reality now; that for me, being in the hospital is a somewhat “normal” event, rather than the earmark of an emergency. I needed them to see what it’s like to wait for days as doctors try to figure out what they’re going to do, which is very unlike the image we get from television that doctors are obsessed with just your case and is putting all of their resources towards you until they have an answer. There’s a lot of hurry up and wait in the world of dating someone with a chronic illness.

It’s hard, because in some ways it’s like leading the conversation with your inner monsters. You don’t get the option of hiding it, or waiting until something happens to reveal what makes you less than perfect. From the moment you spend more than a few minutes with me, my imperfection is brutally honest with you. It’s there, in a way I can’t lie about.

Am I lying? Man, I wish I were. I wish I had the luxury of making all this shit up, when in actuality I’m in great health and having a wonderful time day to day. I wish my life was full of all the things I wish I could have, the things I expected I would be doing at this age. I wish I could go out tonight to a bar, have a few drinks, hang out with my friends, and go dancing. I wish I could create a world where this wasn’t my day to day existence, believe me.

But I will always have detractors. I will always have people, for whatever reason, who feel the need to either highlight the honest imperfections I have (which I don’t mind so much), or make up shit to make me look bad (I mind a bit more). But in the end, the only weapon I have to win something like that is to keep on keepin’ on, living my life as honestly as I can, and prove them wrong by just being as open and honest as I can.

So in case you Googled “Is Del Tashlin lying?”, the answer is yes. Every day, Del Tashlin is downplaying how much pain he is in. He is pretending to be totally okay with all of his chronic health problems, and that his disability never depresses him or makes him angry. He lies to himself, all the time. But to you? That’s up to you to decide. Google won’t know the answer.

 

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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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Don’t Panic

April 14, 2013 at 2:06 am (Death and Dying, Hospitalizations, Medical, Mental Health, Spiritual, The Panniculectomy) (, , , , , , , , , )

The theme of this hospital stay seems to be “Don’t Panic”, like the large friendly words they put on the cover of the Hitchhiker’s Guide to the Galaxy. Except in my case, I keep being told not to panic over things that I feel pretty strongly are totally panic-worthy.

I come into the ER thinking I had liver toxicity, and it turns out that I have another serious infected pocket of tissue, and yet I am supposed to somehow be relieved by this news.

Then I find out that this new pocket, although smaller than the one that was removed surgically in December, has a “skin membrane” and also has “air pockets”, both signs that it will likely have to be surgically removed rather than treated via antibiotics. Yet the fact that it’s smaller is somehow supposed to make me feel less worried.

The fact that this time, they put a drain in and practically nothing is coming out, whereas the last few times it was so productive they had to use two or three bags at the moment of insertion to contain all the output, is supposed to be reassuring. Even when the nurses keep saying, “This probably means it’s not in the right spot.”

I almost never manifest a fever or other stereotypical signs of infection until it’s at “going to kill you if you don’t get to an ER” level of infection. Yet, the fact that I don’t have these stereotypical signs is supposed to make me feel good. In addition, since nausea is not a typical sign of infection (and yet every time I get an infection my nausea gets markedly worse), I shouldn’t be worried about my inability to eat (yay weight loss, says the nurse) or that the nausea is so strong I scared my nurse into giving me a EKG because of my symptoms.

Even though I’ve already blown three veins, when I start to feel the signs that the antibiotic they won’t be sure I need until Monday is burning through my IV line, I should sit tight and suffer until the line actually blows, because it’s really important. If I ask the doctor to wait to give me the antibiotic that burns my veins out until they can use a PICC line to infuse it, I am going against medical advice. (Yes, for asking.) I am being irrational about blowing out my veins, because using a caustic med before we know if it will actually treat me is rational.

When my pain quality and location changes drastically in the span of two hours, getting bad enough to wake me up after less than a hour’s consecutive sleep in four days, I’m supposed to be reassured that since none of my vitals changed, that everything is totally okay. I don’t know about you, but knowing something got much worse and there’s no apparent reason, scares me way worse.

I don’t know. I used to love Johns Hopkins, but now it’s just turning into another shitty hospital with nurses who don’t give a shit and doctors who hate you because you’re on pain meds. It’s another ER where I get shunted from room to room for 36 hours. I’m expecting Dr WLS to walk through the door any moment now.

And this hospitalization came at a really fucking terrible moment in my personal life. Yes, including the time I was hospitalized two weeks after my husband dumped me. I really needed, psychologically among other reasons, to have a few weeks where my health was not center fucking stage. I needed to spoons to have some big conversations, and instead the things I could have fixed three days ago are starting to fall apart. I’m losing my ability to be rational and objective, and just want people to stop being stupid jackasses, rather than have to spend an hour finding a nice way of saying, “Cut out your stupid selfish behavior you twat”. I need to get the work I’m doing, done. I need to be have the ability to answer emails. I was ready for this shit in December, but not now.

Things really, really suck. A lot. I am very depressed, and very disheartened. You may see me or talk to me and I’m all smiles and jokes, but inside I feel like I did all this fighting for a life that sucks, that I tried to save something that will just continually disappoint me. In a fucked up way, I feel the same way about my life as I did about my marriage in those two weeks before my STBX dumped me; like staying and fighting is the only decision I’m allowedto make, because of what I believe, but my intuition says RUN RUN RUN.

I don’t get it. I could probably handle this if it was something different, new, interesting. Hearing that I may have the same problem over and over again over the next few years is not comforting in the least.

Oh, and PS? They’re talking about more surgery. Possibly in the next few months.

Don’t panic, my ass.

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The Unexpected Blessings of Pain Management Medications

March 31, 2013 at 5:46 pm (Uncategorized) (, , , , , , , , )

It’s easy, sometimes, to get negative when you suffer from chronic pain. I mean, I’m almost afraid to open with that statement, lest my reader go “duh” and skip the rest of the post. I’ve written a lot here and other places about how my pain makes me angry, tired, upset, depressed, lonely, and frustrated. I’ve tried to includes some thoughts as to how it makes me happy, awake, contented, stable, connected, and calm; but it’s not hard to see how those times may be much fewer and far between-er.

I was having a chat with a friend who also suffers from some acute and chronic pain, and we were commenting on the effects of opiates on memory. It is very true that since I’ve been on the heavier opiates, and on a more regular regimen (rather than just taking them whenever things get really bad), my memory has gotten much worse. I’ve been lucky that I have someone in my life who helps me keep track of things, both physically – where the hell did I put that thing?!? I just had it three minutes ago!! – and temporally, like constantly telling me what time it is, even though I not only asked three minutes ago, but I’m sitting at my computer with my phone right next to me, both of which proudly display the time.

Now, granted, some of this is just Del being the peculiar creature he is. One of the tradeoffs of being a deeply introspective and mystical thinking sort, is that mundane and material things sometimes baffle the shit out of me. I have strong anxieties about every day things like filling out forms, or being on time. I get wrapped up in whatever I’m doing in the present moment, like highway hypnosis, only awakening when I realize I haven’t peed in five hours or I’m practically falling over from exhaustion or low blood sugar. Rave is excellent at making a plate of fruit, cup of tea, or whatever else I have been overlooking, magically appear next to me specifically so I can concentrate on whatever I’m working on and not deteriorate to a point where recovery takes longer than it should.

In a way, though, the opiates effect of making me much more focused in the present moment, is it’s own blessing. Sure, it’s annoying as hell when someone shows up at my door and I’ve completely forgotten we had made plans, but when it comes to things like having a meaningful conversation or working on an essay or devotional piece, people notice that I’m fully invested and hard to distract. Although, the distraction issue surfaces in a different way; if we’re talking about cars, and all of a sudden I see or hear something completely unrelated to cars, I might go off on a tear about this new subject and forget we were ever talking about cars to begin with. You might laugh, but when I think it’s important, I may jot down the subject of the conversation or the reason someone asked me to listen, specifically so if I get off track I can glance down and remember what I’m supposed to be talking about.

When I talk to people about meditation, one of the biggest hurdles they struggle with is letting go of the immediate past or the immediate future. They can’t relax into the present moment because their brain is too preoccupied with what just happened to them, or the thing they just read/saw/did. Or they might be fretting about things they could be doing instead of meditating, or get stuck making a mental list of all the tasks they need to tackle once this meditation thing is over with. I don’t have that problem, and I admit it’s partially due to the opiate’s effects on my brain. It might take me a few minutes to let go, but once I do, I almost have the opposite issue! I forget what I was just doing, or what I am supposed to be doing right after I finish. I let the thoughts and feelings of the meditation guide me to whatever I do next, which can be useful sometimes, but not so much when you have deadlines or pressing needs that must be addressed.

Overall, I am thankful for this opiate-influenced ability, though. It can be easier for me to let go of harmful emotions, if I just remove myself from any reminders of why I might feel that way. I can wake myself out of a ruminating state much quicker, and let myself get lost in whatever is more productive than sitting around bemoaning my current state. I can have fun tonight, even though I know tomorrow is going to be challenging in some way.

This is a big change for me. I’m a Libra, and one of the qualities we supposedly share is that we rehearse. Before I go to a party, I lay in bed imagining the people who are going to be there, and the conversations we’re likely to have. I play out what I’m going to say, and try to guess what questions they might ask and how I should answer them. Before each class I teach, even if I’ve taught it a hundred times, I take a quiet moment to look over my outline or notes and picture myself teaching the class. In fact, I can feel very flustered if a situation I’ve rehearsed in my head goes wildly differently in real life.

However, the opiates have softened this for me. Although I still rehearse, I don’t get so hung up on things happening exactly the way I project. I am quicker to tell myself, “It will be what it will be”, and not let myself get stressed over creating mental flow charts of “If they do this, I’ll do that, and then if they do this other thing, I’ll run off to the bathroom to avoid reacting to it where they can see.”. I can release my expectations and instead allow myself to fully experience the reality of what I’m engaging with.

This also helps me tremendously in my interpersonal relationships. Instead of projecting what I want or need onto someone, I can relax and explore who they really are and how they are different than the version I’ve created in my head. (Oh, come on, I can’t be the only person who thinks this way.) I can focus on someone’s crisis without getting overly distracted by my own feelings and needs. And honestly, people can tell me things in confidence, because unless it’s somehow shocking or important enough to leave a lasting image, I’ve probably forgotten it five minutes after you finished telling me.

It’s important to me to remember these positives, because the world is very good at reminding me about the negatives. People who don’t understand or experience chronic pain try to be encouraging by suggesting that if I try an alternate form of pain control, someday I might be able to “get off the drugs”. It is very hard not to be able to drive myself places, and the main reasons I don’t drive is because should something terrible happen, the amount of opiates I’m on would make me a liability. (Even though long term use obviously creates a level of tolerance, that won’t likely be taken into consideration if I get into an accident.) There are lots of reasons why the opiates limit me, but at the same time, they bring their own blessings and allow me to do and experience things I wouldn’t be able to otherwise.

Thank you, Mistress Poppy, for bringing pleasure with the pain, gifts with the sacrifice, and unexpected blessings among the suffering.

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Maryland House Bill 1453

March 6, 2013 at 8:50 pm (Chronic Pain, Disability, Living With Chronic Illness, Medical) (, , , , , , , , , , , , , , )

You may have read some of this on my Facebook page, but it’s so vitally important to me I’ve decided to develop an entire blog post about this.

I’ll start by providing you the link to the NORML page about this bill:
Maryland House Bill 1453

From NORML’s page:

Delegate Curt Anderson (D-Baltimore) has introduced legislation, House Bill 1453, that seeks to make Maryland the third state to legalize and regulate the adult use of marijuana

House Bill 1453 would create a system to regulate and tax cannabis in a manner similar to how the state handles alcohol. It would instruct the Maryland comptroller to license marijuana retail stores, wholesale facilities and testing facilities and apply an excise tax of $50 per ounce on wholesale sales, with proceeds going to fund treatment programs to prevent alcohol, tobacco and drug abuse.

This is an issue very, very close to my heart. As many of you know, I suffer from extreme chronic nausea, sometimes unable to eat even a single meal a day. Although I am on a nausea medication with a very high potency, even when it removes the sick feeling I still don’t find food attractive (instead, it just reminds me how I’m going to feel when the med wears off). I have used cannabis in the past to great success; but since I’m beholden to a pain contract in order to obtain opiates, I am randomly drug tested with the risk of being thrown out of the program with no more than a single month’s prescriptions (and no support for withdrawal, which can in some cases be  lethal). Therefore, I can no longer take the risk of using an herbal supplement that I *know* works, not just for my nausea, but for my pain, insomnia, and neurological symptoms like tremors and dystonia.

Even though this bill isn’t for legalizing medical marijuana per se, by decriminalizing it completely, there’s strong evidence that my pain doctor cannot remove me from the program for engaging in legal usage of herbal supplements, as long as they aren’t contraindicated with my current regimen. And even though it’s risky to admit, my pain doctor has, on more than one occasion, made vague references that he wishes this were available to me, but that the program cannot condone the use of illegal substances. So by decriminalizing the sale, possession, and usage of cannabis, you’re not only helping our economy, freeing up our police force to focus on violent crime, and legalizing access to a substance that does less harm to the human body over time than either alcohol or tobacco; you’re also de facto allowing patients access to a powerful supplement that has been proven to be of aid to persons with MS, AIDS/HIV, cerebral palsy, and many other conditions. Because after all, if doctors can’t deny you service because you use legal intoxicants like alcohol or tobacco, then my fear, and the fear of many others in programs that rely on urinalysis to gain access to treatment, would be alleviated for good.

Even if you, personally, don’t enjoy cannabis, and wish that others wouldn’t use it, that doesn’t mean that it shouldn’t be available to the thousands and/or millions of adults who use it responsibly already. There are so many worse crimes we could be spending the millions of dollars we do on enforcing a law so easily circumvented. And the mandatory minimums are a joke; people with small amount of cannabis get longer prison sentences than rapists or child molester. It’s ridiculous, and has to stop.

If you live in MD, click on this link to send a message to your legislators about this issue. If you don’t, you can put my zip code into the form – 21742 – (it will ask for my street name, if you need it email/FB/Tweet me and let me know) and just tell them about me and my story. It has been proven that legislators vote their conscious in the absence of communication from their constituents; but vote differently if the people inform them they feel strongly one way or the other. So even though it’s a little internet form letter, it still gives them an additional push towards voting the way the people want.

Thank you. I really mean it. Even if you just read this, now you know my story and hopefully that will urge you to action.

The link, again, to the NORML page where you can contact your legislators.

The full text of the bill is also available here

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What about it?

February 18, 2013 at 4:03 pm (Chronic Pain, Disability, Living With Chronic Illness) (, , , , , , , , , , , , , , , )

“What about Dying for a Diagnosis?” Winter asks, in that way good friends, or sometimes shamans, ask someone about something they’ve been overlooking for longer than they should have.

“I know, I know…I just don’t know what to say. ‘Things are going the way you’d expect’ doesn’t make for an interesting blog post,” I reply.

I’ve made several fairly popular and viral posts over at Sex, Gods, and Rock Stars lately, and have three or four posts sitting in my word processing program, unfinished. (I tend to jot down ideas as they come to me and then develop them in small segments until I reach a stride in my writing and finish a post. Sometimes, either possessed with a strong opinion or a timely matter, I will conceive and write an entire essay on the same day, but most of the time I work in starts and stops as spoons allow.) But none of them are for here; and there are more reasons than merely not having anything earth-shattering to say about my current roost in my medical journey.

And it’s not untrue: things have slowed down incredibly since the surgery. I assume weekly posts that entail mostly of “I’m still healing, still dealing with post-op pain, and the doctor visits have been pretty routine.” Other than one of the surgical drains developing a crack and having to be removed at home (by me, not knowing that there was a significant amount of tubing inside my body – I just knew that the drain was no longer holding suction (which is how it works) and the stitch had blown, so it was going to fall out eventually anyway) and a bit of swelling around the center of my scar that I plan on having checked out by the surgeon’s office sometime in the next week or two, there hasn’t been a lot of dramatic action in our hero’s story.

It’s also not entirely true, either. My chronic pain has shot through the roof, with more days finding me in bed doing the bare minimum I need to get through the day than days where I spontaneously decide to do something like catch a movie or go out on an errand. I was also doing something I call “spoon banking”, where when I have a commitment coming up that will require much more energy than normal, I will spend the week(s) leading up to it getting extra rest and being judicious about what I really need to do, in the theory that if I don’t use the energy now on less important things, I will have (a little?) extra when the time comes. I attended my first teaching gig/event in six months this past weekend, and I think that the practice paid off, as it really wasn’t until Sunday evening when I started “feeling it”.

It was good to get out like that. Not just because it was an important personal step in healing from the separation, but because too much introversion makes Dels depressed, and depression comes with its own tangible consequences in levels of pain, sleep disturbances, and mental health symptoms that only muddy the waters in terms of figuring out what the heck is wrong with me. It wasn’t easy, as it was one of those events where I felt like I was running from one thing to another, rather than leisurely enjoying my first large-scale test of my constitution by giving myself liberal amounts of rest between commitments. It’s a side-effect of being one of the programming director’s right hand men as well as his roommate; should something come up where he needed someone with skills I possessed to fill in, it’s hard not to turn to your lovers and say, “Um, hun, is there any way you could…” Of course, this is not how Winter tends to ask me to do stuff: it’s more like, “Dammit! I still can’t find someone to invoke Water or Fire at opening ritual! And it’s in two hours! What am I going to do?” And like most decent people, if there’s anything I can do to ease his stress and make him feel good, I’ll do it. So my “workload” at the event shimmied up from teaching two classes, to three, to also helping produce a ritual, to being in a second ritual, to judging a contest, to helping him find other people to fill in where I couldn’t, and so on.

But this entry is not about that. It’s about my avoiding this blog, and knowing damn well that Baphy only let me start Sex, Gods, and Rock Stars if I promised not to forget that this was my first and most important commitment. It doesn’t help that I was offered a book deal last week, a collection of some of my more spiritual blog entries, and when I submitted links from both SGRS and Dying for a Diagnosis, most of the DfaD essays were relegated to the category of “Cool Things Del Has Written”, which was to say “Not Really Meant for This Book”. Now, I’ll say that the publisher has offered me a few options, including providing formatting services should I want to put out a collection of blog entries that fit this category (but not carrying it under their watermark), and I find myself once again feeling like I may be neglecting this blog, not just in the writing sense, but also in the sense of it being considered part of my voice on the Internet (and beyond, when/if the book(s) come to manifest.

It’s also true that when I was praying about whether or not I should (or could) start the second blog, I bargained that whereas reading about my frustrations with the health care machine and/or my funeral arrangements and/or the spiritual revelations being chronically ill has given me weren’t exactly going to get me international stardom (or many blog subscribers – I had always assumed that the majority of DfaD’s readership was made up of people who already knew me, plus a smattering of other spiritual folk suffering from chronic conditions who found solace in what I had to say on the subject), SGRS was much more in my personal wheelhouse. I already have a reputation and/or following from my vocation as a kink and spirituality educator, as well as a shaman and spirit worker, and the bargain included the idea that once people found SGRS, they might wander over here to see what else I was writing. And sometimes that’s true; but I definitely have twice as many subscribers on SGRS than here. When a new post goes live here, I get something like 150 people clicking links on social media to see what’s up; on SGRS, it’s almost double that.

It’s not surprising; there are many more people interested in, well, sex, Gods, and rock stars than they are about death and dying. This blog is much more personal, and so it may not be of interest to those who don’t know me personally. But it doesn’t help when I use my essay-writing spoons on developing things for SGRS and only waiting until something major (good or bad) happens in my life to blurt out something on DfaD. I could very well be doing more research, thinking, and praying about the spirituality of illness, pain, death, and dying; which would, in turn, inspire me to write more essays here that aren’t so reliant on knowing the particulars of my medical situation or my history with terrible surgeons/lazy doctors/pain management techniques/etc. In fact, I felt bad when I saw that a small handful of people, upon seeing that I had a new blog with much snazzier and less agonizing essays on it, unsubscribed from reading this one in favor of the other. I’ve also seen a decline in how many people bother to click on a social media link to read what’s here, whereas more of them are inspired to give me a few moments of their Internet browsing time when I’m writing about spirit work or devotional practices.

It doesn’t erase the fact that I still don’t have a diagnosis, after almost eight years of suffering. That one of my primary spiritual identities is that of the Dying Man, the person who speaks for those who are much more aware of the limited time we have on this planet, and the messages we desperately wish those who patently ignore this impending deadline (ha! pun!) would pay attention to. I’ve had “The Five Top Regrets of the Dying” essay a friend emailed to me sitting in my bookmarks for probably a month now, meaning to write something about it for DfaD, but instead I’ve been spoonbanking to go to a spiritual kink event and enjoying the blush of a book deal.

What it does, is it lets me feel like there’s more to me than this. It’s something I’ve written and spoken about quite a lot; this fear that what I leave behind will only be linked to the fact that I’m chronically ill, when in fact I’m a much more multifaceted and vivacious person who just so happens to also be chronically ill. It lets me taste this feeling of being a rock star, even while I’m being pushed around in a wheelchair and sleeping rather than partying late into the night/early into the morning. It comforts me, and those around me, to know that all the information and experiences in my head will be passed on to the next generation, so they won’t find themselves having to rebuild a modern form of shamanism/ordeal mastery/spirit work/ritual creation/etc from the shreds of those who were too sick to take a moment and write it all down. One of my mentors and friends, Raven Kaldera, churns out book after book, not taking any time to promote one or the other for very long, because he too feels this need of getting all the information/experiences out there before his chronic illness takes him (or, since we both believe in the concept of being able to communicate after death, at least makes it harder for us to get the point across).

So here’s the skinny on what’s going on with me medically: I have noticed that I am losing weight at a scary rate again; not only the 40lb weight loss I had on Dec 28th, but more than that. And yes, I’ve gotten my handful of “you look great” compliments, and it’s hard to sift which ones mean “You look really good for someone who had major surgery a month ago” from those that are really saying “You look thinner, and thinner for you always means healthier, right?” I’m still wearing supportive garments over the surgical area, although now I do it more when I’m going to be super active or if my abdomen hurts, rather than every day. There’s a growing swelling around the center of my abdomen that is causing the scar to heal inverted (dipping inward rather than keloiding), and I’m going to see Dr. Sacks about that sometime very soon.

My chronic pain has been a devil to me, and my muscles have been locking up, misbehaving, or cramping painfully much more often than they did prior to surgery. My pain doctor was…I was going to say “less than thrilled”, but it was much more like “really pissed off”…at the drug combination I was given by Johns Hopkins (although I did mention that JH tried to contact his office many, many times, both to get his consult on what to give me, as well as to secure that it was okay to release me on that combo, to no avail). And it’s not helping as much as you’d think. I mean, it is helping with the surgical pain for the most part, but my chronic pain eclipses it. I’m very worried, because there are three tiers of pain management – think of it this way: there is “have some occasional Vicodin for when things get really bad, but mostly rely on NSAIDs to get through it”, there is “okay, here is some OxyContin, and have this other narcotic when things get really bad” (which is where I’m currently at), and then there’s “We need to start talking about permanent pain management options, like implants or lifelong narcotic plans”.  Basically, I’m at the place where if I get anything stronger to help with my pain, it will be considered going from tier 2 to tier 3, and there’s nothing above that. So if I accept going to tier 3 now, if things get worse as I age, or if I grow a tolerance to the tier 3 treatments, there’s nowhere else to turn but learning to accept a very painful reality. So there’s really nothing he can do to help manage it, except offer up lifestyle changes.

I am looking into getting a mobility scooter (y’know, rather than a Vespa) in hopes that by the summertime, where I do a lot of events at a local campground, I will be able to get around independently rather having to rely on golf carts to get around. (Renting a golf cart just for my own purposes is rather expensive, even just for a weekend, and hoping that one that is being used as the camp-wide “taxi” will get me around in a timely manner has been..less than optimal, as a teacher/presenter/busy person. There are also places a golf cart isn’t allowed to go, that I’m hoping I may be able to access on a personal scooter.) It will also mean that I won’t need someone to push me around unless wherever I’m going makes bringing a scooter with me impractical or impossible. This weekend really drove home how dependent I am when I’m using a manual wheelchair I can’t self-propel; twice I was trapped in my hotel room because the person I relied on to get me around was unable to do so. It wasn’t their fault – in one case, poor Rave had been running herself ragged and really just needed a nap, which was completely reasonable – but it is a somewhat terrifying feeling when you really want to go somewhere but you can’t do it because no one can help you. Having a scooter would make both the camping events easier, as well as the hotel ones, as the model I’m looking at is built to handle both. I just need to hope my insurance will cover it – which it probably will – and I can get it settled in time.

I’m also thinking about alternative forms of pain management, but it’s hard. I really feel that acupuncture didn’t help, and the therapist I was seeing is someone in whom I have full faith in their abilities. I’ve been told that sometimes you need to shop around to different “schools” of acupuncture (there are several different techniques), and maybe a different one would be more useful. I’d give my left arm to find a massage therapist, but as I’ve said earlier, current none will treat me because of the infection issues. (Which I still find incredible on a long-view basis – since all the ones I spoke to, I told I would just have to rely on amateurs who were willing to rub my muscles, and who wanted to learn better techniques so they could help, and they were fine with that, but they weren’t willing to work with me professionally – but I totally get it from a smaller-view, as it was a ‘cover your ass’ move on their part.) I’ve been working on learning some basic stretching exercises, and moving around a little bit each day with intent, in hopes that maybe something like chair-yoga or chi-gong might be useful in loosing up my spastic muscles. It’s just difficult because I’ve tried so many of these ideas before, in a variety of ways, and they’ve never done more than given me a few hours relief, if that.

Okay, I’m out of blogging spoons now. I’m half-slumped over and my hips hurt from sitting upright. But there, Winter and Baphy, I’ve written a Dying for a Diagnosis post. Now let’s just see if I can keep finding interesting things to say.

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He’ll Look Around the Room; He Won’t Tell You His Plan

January 1, 2013 at 1:59 am (Hospitalizations, Living, Living With Chronic Illness, Medical, Spiritual, The Journey Towards Diagnosis, The Panniculectomy) (, , , , , , , , , , , , , , , , , , , , , , , )

Maybe it’s all the opiates, but I keep wanting to say something profound about how this year was full of upheavals for me and sound all poetic and mystical and intelligent. But really, I think it would just be rehashing stuff I’ve already said and done, and after surviving my ordeal I have very little desire to look backwards anymore – at least for now. I am choosing to look towards potentiality, towards the empty status update box, the (mostly) empty Google calendar, the blinking cursor at the beginning of the open Word document, and taking a nice deep breath.

A lot of my recent Underworld journey* put my feet on a very specific path, and the first step, 2013, is about being a year of contemplation – and really, things have all fell in line to make that very easy. I’m moving into a house where I will need much less help taking care of myself; both in that it is all on one floor and therefore I can make my own food, do my own laundry, and the like, but also because I will be living with my full time slave who receives such joy in her service. (And boy howdy does it make a difference when someone who you rely on for assistance does these things with an open and happy heart, rather than a resentful and lazy one.) I have much less teaching commitments, and I’m not really planning on chasing down more. (My plan is to submit to events I’ve never taught at before, just to see what’s out there, and possibly choose to ::gasp:: attend a few new things, too.) I have enough money to pay my bills and just a little extra to have a nice day now and again. I have the ability to focus on doing a little more work from home when I need more scratch, and a little less when I don’t.

Except for the all the follow up doctor’s appointments and the regular medical merry-go-round, I really don’t have a lot of reasons I have to leave the house. I mean, I love my friends and will want to see them from time to time, but there’s something to be said for the fact that we looked really hard to find something in the much more accessible city of Frederick, only to end up in the much more out-of-the-way city of Hagerstown. A casual trip to Baltimore or DC would be much more of a drive now than it was before, and we really only have a handful of friends who live less than 30 minutes away from H’town. On top of that, we found a tiny little complex that’s mostly meant for senior citizens (who were cool with us moving in when they found out I was disabled), so I expect our neighborhood to be quiet and respectful as well.

After the crazypants monkeyhorseplay that was 2012, the idea of spending a year in sacred contemplation sounds absolutely, well, divine to me. I know it scares some of my closer friends and lovers, because I do have a tendency to cocoon away from the world and not notice how long I’ve been gone until someone comes in and pulls me back out again. But I will have to find a balance, because I need this time of quiet, stress-free thinking and feeling if I am going to truly figure out what happened to me on Dec 28th.

I know many people are waiting with somewhat baited breath to hear about what happened to me and why it was decided that I was to return to the land of the living, but unfortunately it’s going to take me some time to piece it all together. Instead of something like having a dream, or even a living/waking experience, it was more like I came to in ICU with a head full of foggy memories that weren’t there before, even though I didn’t have the physical connection to those memories. I am fumbling at words here, and most of the examples or metaphors I would use might only serve to confuse the matter. For those of you who have had ecstatic trance experiences, or dissociative episodes, or perhaps even possessory experiences when you were the seat/horse, it kinda felt like that – like you’ve come back to your body, and you know it’s seen and done things that your consciousness wasn’t present for, but every so often something triggers a memory, a foreign thought, that feeling of being right on the tip of your tongue but not quite there.

Luckily, Rave was at my bedside and ready to jot down notes of the things I remembered in the immediate hereafter, when I was still in ICU and hadn’t yet fully realized what my brush with death was. I just had all these memories that both did and did not feel like they belonged to me. Like I said earlier, I’m grasping at words and failing quite a bit.

Over the next few days, I did some talking to various mystical types who were able to just listen to what I had to say and give their insight when they had any. I know when I get to the new place and set up my altar, some of the images will coalesce. When I get time to journal freely, and to get back into a meditative practice, and do all the shaman/spirit worker type things I have been putting off for a while now, it will all come into view.

So for now, I leave you with two thoughts based on my Journey:

1. Everything you do is a choice. You may feel like you have no say, like it’s the proper thing to do, that it is required of you, but in the end, the only things you have to do is “stay black and die!” (-Joe Clark, Lean on Me) That is, everything that is outside of your autonomic system is a choice. Spend a day being conscious of all your choices, every one. Do you always drink coffee that way, only because it was the way your mom drank coffee and so that made sense to you? Do you have to be someone’s girlfriend just because you slept with them last night? Do you know why you chose not to shower today, why you put your hair up, why you were mean to your coworker? Think about it, and become painfully aware of every single choice you make, and wonder what would happen if you fell out of step, made a different choice, went in a completely different direction?

2. Every time I go into surgery, I get a song stuck in my head. I have no idea why this was the song of my panniculectomy, but it was also heavily used as the background music for my Ordeal. It is “Pumped Up Kicks” by Foster the People. It is about school shootings, so that you’re trigger warning.

I like this second version a little better; and yes, I first heard this song on The Voice. Sue me.

 

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