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

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

Dear (My Primary Care Physician):

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

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

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

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

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

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

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

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

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

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

Thank you for your time and attention to this matter.

Del Tashlin

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

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

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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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The Three Sided Coin

April 16, 2013 at 7:21 am (Hospitalizations, Living, Living With Chronic Illness, Medical, Mental Health, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , )

If you just want the short version, you can skim/scroll down to the “Here is the TL:DR Bookmark”, and start there. You’re welcome.

As you all know, I had a panniculectomy in late December, from which I healed much faster than expected. The surgeon had predicted a much more dire situation, but in the end other than a little breathing issues on the table everything seemed to be going fine. By February, the surgeon was ready to start scheduling my follow-up appointments six weeks apart; we had agreed before the surgery that we would be following up for at least a year if not longer, because there was a really high chance of post-op complications. Six weeks was the maximum time between follow up appointments, so that’s how well I was doing only two months after the knife.

In the middle of March, I noticed that there was some very slight swelling around the right-of-center part of my abdomen, around part of the surgical scar. The doctor has warned me that there might be odd swelling up to a year afterward, so at first I dismissed it. Also, I had just spend two and a half months “healing from surgery”, so I wasn’t keen to go running back to the doctor right away; I wanted to spend that time and energy getting back into the swing of things post-separation, booking some gigs and finishing the book. Every week I’d say to myself or Rave, “I should call Dr Sacks about this swelling in my belly; it looks a little worse.” And then I’d get distracted doing other stuff and wouldn’t. I kept assuring myself I had the six-week checkup already planned and if nothing else, I’d be seeing him then.

Six weeks finally passed, and I went to see him for the appointment. As soon as he walked in the room, my guilt jumped out at him and said, “Don’t be mad at me; there’s been some swelling. I kept thinking I should call you, but I was busy with other stuff and was afraid I’d have to go on hiatus again to deal with it.” He laughed; he reminded me that this is my body, not his, and if I want to ignore something I had the right to do so. He’d eat those words a few weeks later.

This is an interesting thought, and something worth going on a bit of a tangent on, if you’ll indulge me. (Again, if you want to skip ahead to the part where I get to the point, feel free.) Between having friends who deeply care and sometimes feel invested in my well-being, and being a blogger who shares their medical journey with the general Internet public, it can sometimes be overlooked that we’re talking about my body, and that everyone has made decisions that did not put their body or their health at the top of the priority list. Whether it’s extreme sports or eating a triple bacon cheeseburger with hamburger patties for buns, we accept that sometimes the experience is worth the risk. But when one is both public and chronically ill, people tend to want to bundle us in soft cotton and keep us from any extra suffering. It’s actually something I’ve read quite a bit about when reading disability advocacy and activism papers; that part of fighting for body autonomy is fighting for the right to do unhealthy or risky things with one’s body regardless of one’s state of health/ability when they make that decision.

In writing this blog for over a year, I frequently get emails, comments, or find myself in conversations, in which people basically inform me that they know more about how to treat my body than I do. That’s not what they say, but it’s what they mean. When someone sees me eating something delicious, but not the most healthy (or these days, merely something I’ve previously stated is a food or drink I am avoiding) they feel they not only have automatic permission to point this out to me, but in some cases, they physically take the food away or publicly shame me for making that choice.

During this hospital stay, people have been bringing me slushies from Sonic, which is a total Del comfort food. They’re basically fruit, simple syrup, and frozen water (and I get the ones that Sonic claims are made from “real fruit”, rather than just a flavored syrup), but it doesn’t take a food scientist to know that they’re full of simple sugars. My blood sugar numbers have been pretty shitty lately, and most of that is due to stress/pain. However, I’ve noticed a behavior among the nurses here that I really wish the rest of the world would take a cue from: they don’t care. When I get “caught” – when a nurse comes in to take my blood sugar only to see a half-empty Sonic slushy on my table next to my laptop – the nurse doesn’t actually say or do anything at all. It’s me, responding to years of programmed fat-and-sugar-shaming, that immediately jumps and says, “You caught me. I was having a slushy.” And it is Pavlovian, this response, because my experience from the last few days has shown me that the nurses don’t give a damn. It’s the people visiting me who make the judgement statements or even just a joke about how terrible it is that I’m drinking this thing.

It’s as if disabled/chronically ill bodies no longer belong to the person using them. We are community property, open to scrutiny and judgement by anybody, but most often by people who think they know better. However, I will assert that when a person feels entitled to judge another based solely on what they see/hear/know in the moment, or solely on what that person shares on the Internet, frequently their judgements say more about them than they do about us. Someone may attempt to shame me for my choices, as some sort of dodge or deflection about their unhealthy choices.

There’s more I want to say about this, but this tangent is getting really long and you’re more interested in what’s going to happen next in my hospital story, so remind me to come back to this sometime.

He didn’t think the swelling was anything particularly surprising or negative, but he sent me to get a CT scan right away to see if it was a new fluid collection or abscess. It turned out I had a much smaller (9mm) fluid collection, but that it was not infected. I got another drain installed via Interventional Radiology (IR), but there was (oddly) very little fluid coming out. What did come out was serrous fluid, or basically white blood cells. I only had the drain in for a week and a bit, as it mysteriously fell out of it’s own accord on that Sunday when I was at Charm City Fetish Fair.

The day before that happened, Saturday April 6th, was a very bad day. Even though I knew I needed to be up very early (for Dels) in order to go to Charm City and register, I could not for the life of me get any sleep the night before, mostly because I felt pain and nausea. It was bad, really bad. Probably the worst chronic illness day I’ve had in the last two years. We got to the hotel and I went right to sleep, woke up, did my class/panel, went right back to sleep, woke up for my volunteer shift, and then sleep. I couldn’t really eat or even drink fluids because I was so sick to my stomach. I emailed my surgeon and his PA to tell them how bad I was feeling and asking for their advice. Dr Sacks felt it was no big deal and to be expected, whereas his assistant thought going to the ER there and then was the better choice. As I was not feeling inclined to go to the hospital, and Dr. Sacks was assuring me it didn’t have anything to do with my abdomen, I decided to stay at the event.

As part of my earlier tangent, I wanted to add another point here. Again, feel free to skip this part.

Another way in which people outside of my immediate circle judge me and my choices is when they criticize me for leaving the house. I have lost count of how many times someone has suggested that if I only stayed home more often, or rested more, or did less work, or some other way confined my life to my bedroom, I would miraculously feel better and/or have taken better care of my body. They also feel entitled to make those comments because I openly write about financial struggles and have received donations from people in the past to help cover medical costs; and yet, I also write about going to parties or events or in some other way spending money on a social life that, in their opinion, would be better spent on medical costs.

I can’t stress enough how backwards this is. If I never go out and never do fun things, then my entire life becomes restricted to “being sick”. The only people I know – and I do know them – who want their lives to completely revolve around being ill/having medical emergencies, are mentally unstable. They thrive off of the attention people who suffer are given, and they are immediately jealous if someone else gets one iota of attention because that other person is also suffering. It’s as if there is nothing redeeming about them, nothing worth paying attention to or engaging with them over, except their illness.

I, and I like to think saner people, fight that perception with every bone in our body. I begged Baphomet to allow me a second blog specifically because my online presence had become completely focused on me being sick, and it’s not the only, or even most important part of my identity. But in order to do that, writing about my adventures is not enough; I actually have to go have them. Now, this doesn’t mean that I spend the grocery money (or the prescription money) on sex toys and roller coasters, but it does mean that – gasp – I choose to cut back on one thing in order to have fun, and also that – gasp – I frequently go out and do fun things when I “should” be home resting. Anyone who tries to shame me for leaving my house twice this month, putting off seeing the doc by a week or two, doesn’t understand or support the concept of people living full, complete, joyous lives. And that’s just sad, because it means that their life is so boring, so empty, that their idea of fun is to criticize and ridicule some random person on the Internet for doing something fun.

Sunday morning came, and our plan was to get dressed, eat some breakfast, take a look at the vendor mart, and go home. A friend of mine was in charge of vendors and was telling me that no one was buying stuff and the vendors were feeling kinda desperate. As I was getting dressed, I turned at one point and realized my drain was on the bed, and it was too far away from me to still be attached. Sure enough, upon closer inspection, I could clearly see the end of the tube that goes inside of the abscess lying on the bed like it was just another piece of my outfit. I emailed Dr Sacks and his PA again, and this time they both stressed that I should only go to the ER if I felt I had to, because there was really nothing the ER could do to assist me. I bandaged up the wound and left the hotel for home, spending most of the next two days asleep.

I was looking something up online about Isoniazid, my TB drug, when I remembered about liver-toxicity, which is a well known and documented side effect that hits those who get ill a lot. I brought up a page on the med and lo and behold, there’s a list of all of my current symptoms under the heading, “Seek out medical attention immediately if you experience…”

I had been waffling about calling a new PCP or going to see the old one. My PCP is no spring chicken, but at least I’ve been with him for long enough that I feel like he knows what’s going on and how to look at the bigger picture. However, I couldn’t get in to see him specifically, but another doctor in his practice. My ride shows up to take me to the appointment, and even she suggests we skip it and go directly to the ER instead. At this point, however, I’ve created this narrative in my head that says “If you go to the ER, it will be an emergency. If you go to the doctor, it will be no big deal.” I even reaffirm my decision when we reach the point in the journey where we could still peel off and go straight to the ER.

Well, we know how that played out. The PCP listened to what I had to say, and immediately knew she was out of her depth and I should go to, not just the ER in general, but the ER at Johns Hopkins, since I’ve been working with them and my files are all integrated. So my patient driver and I hop back in the car and reverse our trip to JHER.

It is quickly realized that I do not have a liver problem, but whatever is ailing me is fucking serious. I get admitted fairly quickly, even though it takes hours upon hours to get a bed. I start to feel much more ill as they park me in a tiny waiting room (which they now swear is a “staging area”) for two hours with no supervision, no one checking in to see how I’m doing, and a gaggle of very angry sick people who have also be relegated to this purgatory. Finally, Rave and I make enough of a stink combined that they move me back into the ER proper but we have to continue waiting for a “real bed”.

We learn that the new fluid collection has grown larger. It now has a “skin”, a membrane that holds it all together, which makes it really difficult to kill with antibiotics alone. They take cultures and try to determine exactly what is in there and what way is best to treat it. I end up losing the fight over getting a PICC line or central line when they start running Vancomyacin through my veins, and I blow three or four veins that first night alone.

The next few days are kinda blurry for me. See, at the same time, I started suffering from very short bouts of amnesia. I would forget where I was, or what I was doing at Johns Hopkins (I kept thinking I was back in High School). I got a neuro consult and although they’re testing just to make sure I didn’t have a mini stroke or temporal lobe seizures or anything like that, they think it might be a side effect of long term use of narcotic pain meds. I don’t know if I agree, but I do admire them for at least making an effort to make sure it’s not something more serious. They chided me a bit for not chasing the neuro stuff more aggressively (like going to get all the test my neuro ordered or going to see him more often) and I explained that I have been putting out fires since August and am doing my best.

Anyway, now you know enough of the backstory to get to the point.

Here is the TL:DR Bookmark

The Infectious Disease Doctors, The Plastic Surgeons, and The General Surgeons all agree.
The reason I am getting these infected abscesses in my abdomen is because of the mesh that was used during my ventral hernia repair back in 2009. Yes, that was Dr. WLS’s doing.
They used mesh to hold up and strengthen my abdominal wall, and in the process the mesh grew a “biofilm”, basically, a wonderful fertilized area for bacterial infections to grow and flourish.

Option One: “The Big Deal”

I will continue to have these infections while I still have the mesh inside of me. Removing the mesh, however, would be a big deal surgery wise. The mesh is covered in adhesions, and may very well be attached to my intestines, and it was put there for a reason. So this surgery, which I’ve nicknamed The Big Deal, would be a team of surgeons going in, finding said mesh (it doesn’t image well on CT or Xray), carefully removing all the adhesions, removing it from my bowels (which could get complicated very quickly, and include such favorites as “Bowl Resection”).

The surgeons are giving me all the exact same doom and gloom songs that they did about the surgery in December; that I will definitely be in the hospital for close to a month if not longer, that there is a really good chance I won’t make it through the surgery (especially now that I had a hiccup in the Dec one), and it will be a very long and difficult recovery with lots of creative agony and embarrassment. But this time, none of the surgeons want to do this surgery. They all feel this is something we should wait, and plan, and know the area super well beforehand, for the reasons we all know and have discussed.

The only way The Big Deal would happen during this hospitalization is if I spiked an abnormally high fever (like 104), or in some other way showed signs of advanced infection.

Option Two: “History Repeating”

My second option, which is still very much on the table for this hospitalization, is to address this specific abscess. That would entail having much the same surgery that I did in December; it would be much more superficial than The Big Deal, in that it would not entail cutting into the muscle wall or anything like that. It is still as dangerous as it was last time, but we also know that I did very well with the surgery itself and healed fairly well.

Option Three: “No Cuts, Just Infinite Pills”

This is the option most of the doctors (but not all) are currently advocating for, depending on how the next few days go while I’m here. This course would be to put me on really strong “nuclear bomb” home antibiotics, either via a PICC line or oral meds, for six to twelve weeks. After that, I would be given a permanent prescription for whatever antibiotic they feel will fend off more infections in the abdomen. I would still have the mesh, and that would still be fertile soil for growing infections, but the antibiotic would hopefully keep the infections from becoming anything to write home about.

Before you get all excited that there’s a non-surgical option, there are some big drawbacks to both being on a nuclear bomb level antibiotic for six to twelve weeks, and there are some bigger drawbacks to being on a permanent antibiotic prescription. Now, I’m saying “permanent”, but that makes the assumption that we never decide to try to correct the problem surgically.

Now, this makes it sound like I have a decision to make, right? Not really. I need to be informed about each of the options, and have a general understanding of how I feel about them and how seriously I want to pursue them. But how things like this usually play out is that the doctors will look at all the test results and data and make the best decision based on their knowledge and experience, and then recommend that choice heavily to me. It doesn’t mean I couldn’t chose to advocate the fuck out of a different choice if I really wanted it (like in Dec, when Dr Sacks kept suggesting reasons why we’d postpone the surgery another six weeks), but I’m the type of guy who trusts but verifies.

If we lived in a world where I could make a free and conscious choice, I would probably choose History Repeating for the right now, and then spend the summer preparing for The Big Deal. I’ve already reached out to Dr. Awesome and asked her if she might be willing to look at my current records and give me a consult over what she thinks is the best choice; but I did this with the covert agenda of asking her to be my surgeon for the Big Deal. Dr. Sacks would handle History Repeating, but I know from past discussions that he would feel uncomfortable doing The Big Deal all by himself. He and Dr. Awesome have worked together in the OR before, so it’s possible to get them to team up for The Big Deal.

Right now, they’re still trying to get a very accurate understanding of what types of infection I have growing in my abdomen, and also digging up information about the mesh that was installed – when, what type, where, etc. If I had to take a wild guess as to how much longer I am going to be here, I’d say at the minimum three more days, at reasonable maximum (barring surgery) I’d say a week or a week plus a day or two. If History Repeats, I would bump that up to two to three weeks.

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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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Looking Towards Surgery: The Plan

November 15, 2012 at 7:43 pm (Hospitalizations, Medical, Mental Health, The Journey Towards Diagnosis, The Panniculectomy, Tuberculosis (Inactive)) (, , , , , , , , , , , , )

I am happily writing this post from the comfort of my bedroom at The Squat. I was discharged today after my “two to three” day stay that was actually six. But a lot of good was done in those six days; the abscess was repunctured and all of the infected fluids that had collected inside was drained out and cultured. I found out definitely what kind of infection (or at least one of them) resides in my pannus and was given a strong antibiotic that will help clear up some of the immediate threat. I was able to start my course of Isoniazid while being observed in a medical setting to make sure I didn’t have any negative reactions to it; and I got a much better understanding of what I face when I go back in the end of December for my panniculectomy.

The biggest goal between now and then is to keep the infection(s) as low as possible. It’s unlikely I will be completely infection-free before the surgery; after all, that’s a big reason for the surgery, to remove not only the pockets of abscess, but all of the infected and necrotic tissue that has built up in my belly since the hernia repair in April (and who knows, maybe before). I have been chastised to take the bedrest “suggestion” much more seriously, so other than some low-key social gatherings (like going over to a friend’s house for Thanksgiving) I will be spending the majority of my time in my bedroom being a big ol’ slacker.

I not only have to go to a few follow-up appointments to make sure the infections are doing as well as they can, but I have to see a pulminologist to assess my strengths and weaknesses where a long surgery is concerned. I want to get my daily life in a place where I can convalesce for a month or more at Johns Hopkins without a lot of worries back home. This includes doing what I can to help Rave get the search for a more permanent place to live into full gear, getting my meager belongings that are here ready to be moved in my absence, and making sure that I have little to nothing to stress about so I can fully focus on getting better.

In an odd way, I feel that this unplanned trip to JH turned out to be a very good thing. I was feeling a bit at loose ends about the upcoming surgery since there was really nothing planned until my pre-op appointment with the plastic surgeon on Dec 14th. It gave my doctors a chance to think and experiment with pain management post operatively that really takes my (somewhat high) tolerance for opiates into consideration. (A regimen that actually brought the pain related to all of this down from a 7 to a 4 on a regular basis, that did not require IV access was put together the day before I was discharged. Because it increased some of the meds I already take by quite a bit, the chance to “try it out” before I was home and on my own not only to make sure it addressed my pain, but was something that didn’t leave me a drooling nonfunctional mess was appreciated.)

It also highlighted some weaknesses I need to address before the surgery. Rave busted her ass, like she always does, to be as available to me as she possibly could, but at the cost of enough repairative sleep to allow her to be fully functional at work without having to rely on her wakefulness drugs or caffeine, which in turn gives her migraines. When I go in for the long haul, it will be better for both of us if we can figure out a schedule that allows her to feel useful and be available to me when I need her, but also gives her “nights off” so she can get the sleep she needs. This means we may need to find other people who have evening/nighttime availability to spend time with me, but also make sure I have occasional daytime visitors who can help with some of the needs/tasks that I can’t ask a nurse or tech to do.

I think it’s important for people to understand that although visitors who come purely to socialize are nice and appreciated, it’s not the only reason I may want friends and family around. For instance, I had a really difficult time this visit getting the nutritional team to understand and meet my basic food needs, so having people bring me supplemental food and drinks can assure that I’m not going without. I may also want someone I feel completely comfortable with assisting me with things like hygiene, rather than having to ask a stranger, especially since the inpatient experience forcibly strips you of a fair amount of privacy and autonomy already. Being able to run down the day’s meetings with various doctors and other medical professionals with someone else not only helps solidify my own recollection – which I have issues with due to some of the neuro issues – but brings a fresh perspective and alternate points of view that may hold important answers for difficult situations. Sometimes, having someone else present while meeting with a doctor can help remind me to ask questions I may otherwise forget, or bring up subjects that those who assist me might benefit from knowing. Even something as simple as watching as a nurse dresses a wound in a particular way can then lead to having someone who can teach those who can’t be present when it’s demonstrated (but who will eventually be in charge of doing the dressing).

And it’s worth mentioning that this trip was incredibly emotional for me. Admittedly, part of the problem was that I got my period two weeks early (practically unheard of for me) so I’m sure my hormones were all messed up trying to deal with that. But I had two days where my anxiety was bad enough that the nurses were suggesting I take some of my anti-anxiety medication, and not having someone who could serve as a touchstone to reality exacerbated issues. I am, by no means, trying to guilt people about not being able to visit, especially since this trip was unplanned and happened to fall almost entirely during a work week, but more to share something Rave and I learned about the power of visitors.

One of my fears about how the planning for the upcoming surgery is falling out is that I have plenty of friends and lovers who are coming from out of town to be there directly before and after the procedure, but most of them will have to return home once I am stable. That leaves me with several weeks where I will still be stuck there, so it might behoove me to reach out to friends and family and set up some planned visits during that time. It can be anything from a local friend making the commitment to come “every Wednesday afternoon”, to other long-distance friends making a trip down to spend the weekend. If you’d like to volunteer for this important service, please email me at awesome.del@gmail dot com so I can start putting together a calendar. If you aren’t local and want to come for a visit, we have lots of resources not only for crash space, but also for people who can lend you a car, or drive you around, or provide meals so together we can minimize the cost. In that vein, if you have those sorts of things you could offer others, or skills/talents/abilities that we might be able to put to good use during this time, please let us know.

That being said, I think it’s okay to mention that in the next few days, Rave and I are beginning to collect funds specifically to help defray the costs of those who have the time and/or inclination to visit, but for whom money is an issue. It’s not the only reason we’ve decided to pass the hat, but it’s one of the most important ones. We’ll also accrue some costs that come with a long term hospital stay that medical insurance doesn’t cover – gas and parking costs, comfort items, etc. Most importantly, my insurance doesn’t cover any of the sorts of things one needs once home again, like bandages, tape, cleaning supplies, and the like. The nurses usually throw together a “care package” of items to help me out, but when I had the first drain in, we eventually ran out and had to source a lot of this kind of stuff on our own.

When the announcement goes out, there will also be things that people who live too far away, or for other reasons cannot contribute time, resources, or money, can do to be of assistance. For example, we will have a phone/email tree set up so people can be kept up to date with how I’m doing without having to clog Facebook (or share intimate details about my recovery with people I barely know) or having to wait until there’s enough for a blog post. We will need a few “captains” who can be in charge of a list of three or four people; make sure everyone gets information and also to collect questions/observations and aggregate them so the “home team” can address them without having to compose the same response several times. (You know, this sounds so complicated, but I’m actually kinda flattered that there are so many people who care about me and my welfare and want to be kept in the loop. When I stop worrying about the details and look at the bigger picture, I’m always humbled by how much affection there is for me in the world. Really.)

Finally, I have “appointed” my friends and (somewhat unofficial) clergy persons Hugh and Shelly to undertake the spiritual support side. There will be a post before the surgery that will help coordinate all the wonderful prayers, energy, and will-working that people have so generously offered.

For now, I’m very glad to be home and in comfortable surroundings. I’m pleased that I have a pain control plan that actually makes things tolerable, and can be proactive about fighting off some of the infection to make the surgery’s success easier. This was a welcome eye-opener on how Rave and I can better plan for what’s coming to minimize our stress and help distribute the work so no one person is overtaxed and everyone – me included – gets the care they need to get through this.

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You Can’t Get There From Here

November 13, 2012 at 8:21 pm (Living With Chronic Illness, Medical, Tuberculosis (Inactive)) (, , , , , , , , , , , , , , )

If you follow me on social media (primarily Facebook), you’ve gotten little updates on the current situation, but I’m going to tell the whole story -albeit in short form, or as short as I can make it- of this current trip to Johns Hopkins. Yes, I am back in the hospital again.

Friday, I took my first dose of Isoniazid (the new TB drug). I waited until then because both of my bad experiences with Rifampin peaked on the second day, and this way it would be a Saturday so Rave could help me or take me to the ER if things got bad. I admit I was pretty nervous when I took that pill, and for most of the morning and early afternoon I was hypervigilant to any ache or pain my body may have.

Part of this hypervigilance makes me aware of how bad the pain in my pannus had become. Ever since the beginning of November, the very bottom of my pannus has been extremely sore and swollen. A light graze against a doorjamb or accidental poke made me shrink back in pain. I hadn’t realized up until then how much it was affecting me, and even the way I was walking.

But I went about my day, watching Glee and getting ready to write my silly Glee blog. I took a break and was sitting on the porch reading Twitter, and I realized my belly pain had increased, and I was feeling a little antsy. I got worried, as Rave wasn’t due home for another three or four hours, so I went upstairs and crawled into bed in hopes that rest would make it better.

I felt marginally better, although I had started feeling like the room was pretty warm. I struggle with odd temperature disregulation all the time, so I didn’t think too much of it. Rave brought me up dinner but I wasn’t all that hungry.

In fact, halfway through I started feeling overly warm and dizzy. I laid down and decided to take my temperature. Good call – it was 101.5. This was troubling, though.

I have three medical things I’m focusing on right now: the wound on my back, the new TB drug, and my pannus/the upcoming surgery. For all three, I am supposed to go to the ER if I have a fever over 100, nausea, lack of appetite, pain/discomfort, etc. I decide to wait a bit and see if eating had somehow spiked my temperature, but three hours saw no decrease. It was time to go.

Johns Hopkins (JH) is about an hour and a half from where we’re temporarily living in Hagerstown. It was a long, tense ride as I felt increasingly uncomfortable and alternately cold and hot. When we arrived, there was a collection of JH’s security cars parked around the entrance of the ER. Turns out it’s a “crime scene”, according to the policeman who directs us into the ER. A judicious welcome?

Once again, the big whiteboard announces there is a four hour wait to see a provider. I have to admit, when I saw the motely crew of all sorts of people waiting, and the remnants of adrenaline from whatever “crime” took place before we got there, it made me think of Stefon. On Saturday Night Live (shut up, it is not dead, and I have a giant boycrush on Fred Armisen) Bill Hader has this reoccuring character on the Weekend Update segment named Stefon. He is an effeminite hipster club boy who comes on periodically to recommend the newest hot spots, usually in conjunction with a holiday. I’m writing this entry on my phone, so I can’t embed a video, but trust me and go look Stefon up on You Tube.

Now that you’ve done that, you’ll understand what the ER was like when we got there. Luckily, I was called to triage quickly and then fasttracked into the ER in less than an hour.

This makes me happy because we didn’t have to wait, but anxious because that’s *never* happened to me before (going into the ER straight from triage, except in the case where the ER was empty or having a slow night). It turns out we’re just going to wait in a private ER room instead, because I think we were there for at least four hours before we saw the actual doctor.

It turns out it’s not the TB drug; they’re not even concerned. It is, however, that my abscess has regrown to almost exactly its old size, except this time it’s full of pus and other infected tissue. A new drain is inserted, and they admit me to drown in IV antibiotics and see what happens. There was some talk of doing the panniculectomy now, but the plastic surgeon thinks that it’s best to try to remove as much infected tissue as we can before we go cutting it up.

They’ve also noticed that new parts of my pannus are showing signs of other infections. The pain from all this crap is bad, and unrelenting. I am struggling with the doctors for adequate pain control. At least they had a glimmer of understanding of my opiate tolerance; when they reinserted the drain this time, I was healthy enough for twilight sedation. Two or three miligrams of Versed and a few of dilaudid and I am still alert and oriented? Even with that, it takes me a day or two to get back to the same treatment I had when I was here last. Finally, as part of the steps towards discharge, the surgeon I really like (whom I have nicknamed Dr. Awesome) figures out a pretty workable solution that relieves a real portion of my pain *and* is something I can continue at home. (She increased both the amount and frequency of the opiates I take for chronic pain. She is the first to state openly that although the 2mg dilaudid IV that I’ve been getting feels good when it’s first pushed, it is still too small a dose for someone with my level of tolerance.) Now we’re hoping that the pain management doc will sign off on the increase, at least temporarily, so I can go home with my pain managed and supported through the surgery in December.

Once again I go through IV sites like cheap pantyhose, and the subject of a central line comes up but too late to do me any good. The antibiotics are shredding my thin, weak-walled veins. Both Zosyn and Vancomyacin have that effect on people with typical veins, and it’s just exacerbated with all the other meds they inject into my line.

One of the challenges during my last stay was that when they cultured samples from my abscess, they weren’t able to grow anything. This doesn’t mean there isn’t an infection, but that it is likely not a run-of-the-mill one. This is why when I came home last time there was a lot of talk about MRSA. However, this time the culture does grow something: Pseudomonas. When they tell me this (during a rushed physical exam with a student present), I fight back tears and I don’t know why. The doctor doesn’t give me any information about it.

When I get a chance to both consult my favorite doctors (Drs. Wikipedia and Google), it becomes more apparent why I had such a strong reaction. One of my friends who had died from HIV had Pseudomonas, and it’s one of those infections that people with healthy immune systems are rarely affected by. This is yet another diagnostically relevant piece of information – although my doctors and I have frequently used the term “immunocompromised” to describe my situation, I don’t have any real medical proof (other than observation and/or anecdote) that my immune system is weak.

There is the diabetes, which at any point in the game can weaken or damage a person’s immune system, but it bears repeating that regardless of how morbidly obese I am, my diabetes is pretty mild. My A1C hovers between 5 and 6, and frequently lowers to “pre-diabetic” levels. My blood sugar numbers are reasonable as long as I am not in severe pain or under a lot of stress. (Or eat a lot of processed sugars, which I have made good strides in that department.) Overall, my diabetes hasn’t been chronic long enough, or severe enough, to make it a viable scapegoat for this.

Before anyone goes there, I am HIV negative, although I did have a pretty serious scare in the 90’s when I had several false-positives in a row. At this point in my life, my exposure risk is low and getting lower. I haven’t had penetrative sex with a factory equipped penis in over two, almost three years, and the chances of it happening again is pretty low. (A tale for another day.) I do still pierce strangers both as pick-up play as well as suspension work, but I’m pretty well trained on how to avoid fingersticks and how to treat one to lower my risks.

The thought I’m having, and honestly have been having for years now, is Lupus. Yes, I know, it’s never Lupus, but sometimes House is wrong, too. My mom was diagnosed with SLE in her 30s, and it made her pretty sick right away. There is some heredity with SLE, and that link is most often between a mother and her first born daughter (which would be me). All along this journey towards diagnosis, I have requested the most basic screening test for it and have yet to get a result. However, there are lots of cases where someone has a negative ALA and still has Lupus. I am seriously considering contacting a rheumotologist and being seen before the surgery to start the longer process of ruling everything else out.

Anyway, regardless as to what lowered my immune system enough to bring on this infection, I was actually lucky. There are two strains of Pseudomonas: one that is “pan-reactive”, or that can be treated with standard (but strong) oral antibiotics; and the other is similar to MRSA, in that it doesn’t react to anything but the very strongest antibiotics. I have the former, so I’m taking a combonation of Cipro and something else (I can’t recall the name).

When they admitted me, they said it was for two or three days. Last time, it turned into ten. This morning makes it day seven, but there is a strong rumor that I am getting discharged today. We’re waiting to hear from my pain doc, approving the much stronger dose. I’m also thinking they’re also watching to see if there has been any reactions with all the new-to-me meds. I am really hoping I am released, as it has been more difficult than usual to get enough quality sleep, and I have started havin mirco-sleeps (where I go from being awake and focused on the day ahead to falling into a deep sleep in seconds, dropping whatever is in my hands and even snoring; only to wake up a moment or two later unaware as to what happened. I also find myself “coming to” having struggled to continue writing. I’ve had other sleep-related episodes and even asked if maybe the doc would want to add a sleeping aid so I could sleep through the night.

It’s hard to write about this hospital trip without mentioning a real difference between this one and the one before, but it touches on an idea I have for another DfaD post, so I’ll just put it out there and elaborate later. Last time, I was here for ten days and had somewhere in the ballpark of ten to fifteen visitors; this time, I am going into my seventh day and I have had three. I know that last time I made several FB posts requesting visits; this time, I was careful to make a single request that said I was interested in visitors (and then 2 posts looking for someone to give Rave a chance to go home). Other than two notable visits, including the lovely K and the fabulous M who jumped on a train and rode all the way down from CT to spend 24 hours with me, I was alone every day until Rave came after work. But like I said, there’s a bigger post floating around in this.

So hopefully this is the slightly more detailed version of what the last week has been like. I will definitely be posting to FB/Twitter when I am released and when I get home. For now, I’m going to try to catch a little more shuteye before the onslaught of the “dawn docs” come a’roundin’.

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This is Not The Surgery I Ordered, Sir

April 9, 2012 at 11:10 pm (Hospitalizations, Medical) (, , , , , , , , , , , , , )

I got a gentle nudge that I hadn’t written anything about my surgery in specific, and how the recovery is going. I can’t promise I’ll share all the horrid details, but I hope you’ll feel like you know what’s going on.

So last Thursday I started having lower abdominal cramps around 4pm. (Right after I posted, in fact.) I get these from time to time, and lately I’ve had some serious hurty bouts of them, so I figured it was one of those and slowed down and started watching my Netflix and trying to wait it out.

About two hours later, I started getting seriously nauseous. Also not alarming for Dels, so I took one nausea med, and then the other, stronger one when that didn’t seem to help. The cramps were getting pretty serious, and showed no signs of slowing down.

I really fought the idea of going to the ER, because I’ve been to the ER with ab pain before and one of two things happen – either they find nothing and I go home and eventually feel better, or on rarer occasions, it’s something really serious and I end up going through a medical ordeal. Neither of these appealed to me, and usually if I just wait, they go away.

I tell Ninja that if I”m still in pain at 8:30 I’ll entertain the idea of going. It comes and goes. Maybe the cramps are getting better, or maybe I’m convincing myself of this so I don’t have to go to the ER. 9:30 comes and goes, and it’s getting worse. Finally, at 10 o’clock we decide that at the very least, I might be able to get some heavy duty pain meds if I go, so we find someone to take us (yeah, remember that we both don’t drive? So we were calling friends at 10:30 at night looking for someone to take us!) and go directly to the actual hospital and not the more local ER extension. Although I’ll be seen faster at the extension, if it’s serious there’s only so much they can do before they have to transport me via ambulance to the “real” hospital, so we might as well just go there.

Let’s cut to the chase and say that I was in the ER for 36 hours without sleep or food. They kept moving me around, and once tried to move me to Labor and Delivery. They let me know that I needed surgery by telling me they had called The Weight Loss Surgeon (we’ll call him Dr. WLS) with whom I have some bad history. I wasn’t thrilled, but I knew why they did it – he’s also a general surgeon and because of his experience with bariatric patients, he’s the best surgeon to do abdominal surgery on someone like me. I later learned that I had a ventral hernia – my second – and it needed to be fixed.

This is what a ventral hernia looks like from the inside. Basically, part of your intestine breaks through the abdominal wall and can get trapped. It hurts quite a bit.

Dr. WLS shows up and the first thing he says to me is, “Weren’t you supposed to have weight loss surgery by now?” He and I have a bit of a back and forth, with me telling him that my neuro thinks that the rapid weight loss I experienced while under Dr. WLS care last time caused or exacerbated my neurological condition. Dr. WLS disagrees, telling me I likely have early onset Parkinsons (!!), and he demands to know who my neuro is. I tell him, and later on he actually called the neuro to demand why the neuro told me this when it was impossible. The neuro stuck to his guns, but Dr. WLS just dismisses this.

Anyway, I tell Dr. WLS that I’m not interested in weight loss surgery. He tells me that I have 3 options – I can go home and do nothing, but this is dangerous and can lead to serious complications, I can go to another hospital that “specializes in hernia repair” (he actually listed two other hospitals with bariatric units), or I can listen to his lectures on weight loss surgery and he’ll do the repair that night. He is surprised when I tell him I need time to think it over. I call patient advocacy and they aren’t pleased with these options.

Dr. WLS returns, a little cowed. We agree to disagree, and I make him promise that if he does the surgery, that he won’t bring up weight loss at all, or weight loss surgery in specific, until I’m seeing him in his office for surgery follow up. He agrees.

I am brought directly from the ER to pre-op, and I don’t know if I have a room to go to when they’re finished. They actually warn me that I may need to go back to the ER if they don’t have a room. This makes pre-op so much more fun. [insert Mike the Surgical Nurse story here]

The surgery goes well. I am wheeled into post op and I hurt all over. Not only from the surgery, but also from being in one position for so long, and also because I’ve had all kinds of tubes in me, some of which were still in (a nasal trumpet, which sounds more whimsical than it is, and a foley catheter). After a few hours, I’m taken up to a real room.

I was given an epidural to help with the surgical pain. It does okay – I still felt some discomfort when I moved, and I was hitting the dose button often – but I end up going into opiate withdrawal because they deny me my maintenance pain meds for over 48 hours and the epidural isn’t enough to ward that off. The hospitalist decided I am on too much OxyContin and cuts my (prescribed by my pain doc) dose in half. Somewhere along the way, they also tell me that my A1C is three points higher than it was six months ago, and now I need mealtime insulin. I’m baffled by this but do not argue.

Unfortunately, it wasn't tequila. Might have worked better.

Fast forward through some bad  nurses. It gets to be time to remove the epidural. Dr. WLS tells me that they’re going to walk me from the epidural to IV pain meds to oral pain meds. This is not what happens. They take the epidural away and I am given less pain medication than I take on a day-to-day basis to cope with the surgical pain. Obviously, this fails to quell the pain I’m experiencing. I stop eating food, and when doctors/nurses try to encourage me to eat, I tell them that I want to, and I will when my pain is below an 8. It takes almost 12 hours before finally I’m given a bolus of IV dilaudid, and am given the option of IV push pain meds to supplement the orals.

However, I’m totally guilted by everyone – the hospitalist, Dr. WLS, and even the nurses – every time I ask for IV meds. I can’t go home until my pain is controlled by orals, they say. I tell them that it’s insane to think that my day to day maintenance drugs are going to be enough to cope with not one, but three incisions in my abdomen, one of which is on a part of my body that experiences a lot of pressure when I sit up or walk. Even the night before I was discharged, I got a dose of IV meds. But they’re so keen to send me home, and at this point I’ve had less than six hours sleep in six days, I just nod my head and agree to whatever they say.

I get home and call my pain management doc just to inform them that I was in the hospital, and that I was given a med to deal with pain but that it was cleared by the hospital with them. They tell me that no one ever told them about the med, and if I have already filled it I am in breach of my contract. Thank the Gods I hadn’t. I get their okay to fill the med, but only if I stop taking my other breakthrough med. This sucks because the hospital’s plan was to augment my regular drugs with the new drug, not replace one of them. So needless to say I’ve been in some pretty bad pain since I’ve been home. But I have slept like I invented sleep, and that’s been good.

Just keep going until you feel less sugary, I guess.

If that weren’t enough, I was sent home with insulin, but with no instructions on how much to administer. I had to call the hospital’s diabetes educator, who was deeply embarrassed and shocked when I told her that no one told me how much to give myself. What’s funny, is that since being home, I rarely test high enough to warrant insulin, and when I do, it’s just over the limit for the lowest dose. I am having my A1C retested at my primary care doc’s next week; I think something hinky is going on.


Tomorrow I see the pain doc, and I’m praying together we can find a way to get my pain under better control. As of now, I can basically lay down (on one side, because I have a drain in the other), sit up for short periods of time, and waddle to the bathroom. Anything more than that is too taxing, pain wise.

The other surgeries, the D&C and the ablation, are on hold for now. I’m hoping to be well enough by mid-May to get them then.

And I’m bringing my nutritionist/trainer to the follow-up appointment with Dr. WLS, so she can tear him a new one if he tried to put me on protein shakes or threatens surgery. I like having attack jaguars.

So that’s where things are. I hate that this happened, I hate the timing of it, I am very serious about wanting to address why I keep having hernias (I have a weak ab wall; my trainer is all over working on that once I am healed from surgery), but for now all I want to do is sleep a lot.

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