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.
I try, when I can, to make the hour drive to Johns Hopkins Hospital when I think I’m having a medical emergency. However, on October 12th, I thought I might be having a heart event of some sort, and realized that I needed to get to the closest ER possible. This meant driving 10 minutes to the Meritus Hospital ER, which turned out to be the worst choice I have made, medically, since having surgery with Dr. WLS.
Over the week prior, I had reoccurring headaches, and increasing pain/weakness in my right arm. On my birthday, October 11th, the pain had become severe, and had spread to the right side of my torso, including over my sternum area. I really didn’t want to go to the hospital on my birthday, and I kept telling myself that it was the “wrong arm” (as, stereotypically, heart events cause pain in the left arm). However, by 3am I was having a hard time taking deep breaths, and the pain in my chest was pretty significant. I woke Rave up and told her I thought I should get checked out, even if it’s just to rule out a heart event.
I had other reasons to worry: I’ve had a bunch of irregular tests lately when it comes to my blood, my blood pressure, and my doctor was suggesting a statin because my HDL was a little (but only a little) high. My blood sugars have been high regularly, and it had been hard to regulate it because I kept having to go off my Metformin due to CT scans and other tests. (Metformin raises your body’s sensitivity to insulin, which helps a diabetic use less insulin – or none at all – to regular their blood sugar numbers.) And the pain I was feeling was pretty damn severe, especially in my right arm. In fact, the reason it’s taken me this long to write about this is because my right arm is still in severe pain – 7 out of 10 pain on a good day – and my hand and fingers have had some weakness as well, which has made it hard to type at all.
So Rave woke up and we drove down to the Meritus Hospital. I’d been there once before, for what turned out to be a superficial blood clot. I wasn’t very impressed then, but it wasn’t awful.
When we arrived, I was pleased to see that there weren’t many other people in the waiting room. One of my biggest reasons for being hesitant about going to the ER is the fact that often, we have to wait hours upon hours before anything significant happens, and I feel bad that the person who brings me there has to stay up all night (or longer) just so I can find out it’s no big deal. Also, ER waiting rooms tend to fill quickly starting on Friday night and lasting through the weekend, since people can’t call their regular doctors for less emergent stuff – or they wait until the end of the work week to seek treatment, so they don’t have to miss work.
The ER has big signs as you enter that say something like “If you are experiencing CHEST PAIN or SHORTNESS OF BREATH, please inform the registration desk immediately”. Since they were both happening to me, I rolled up to the desk and pointed to the sign and said, “That’s me.” I waited about five minutes before a triage nurse came out and led me directly to a EEG machine to determine if I was having a heart attack right then. Things looked a little abnormal, but not “OMG” abnormal, so they walked me through the rest of triage and then brought me back.
That was the end of anything that made sense for the rest of my visit.
A doctor came and saw me about 30 minutes after I was brought back, which seemed like a little too long for someone who might be having some sort of heart event. After listening to my lungs and asking me some questions, he decides I need a breathing treatment. I look at him and ask how that would help my heart problem, and he said, “Well, this will help us rule out something like an asthma attack”. “How about the fact that I don’t asthma?” Anyway, we had to wait for a respiratory nurse to come and administer the treatment, maybe another half hour. As soon as I was hooked up to the mask, other nurses came and tried to take me to CT and X Ray, and were told to come back when I was done. The breathing treatment did nothing for me but make me feel high and unfocused, which was not conducive to me answering the hundreds of questions nurses and doctors and techs had for me over the next two hours.
When I told the CT tech that I have had over 20 CTs in the last year, she freaked out a bit. “We usually recommend no more than 6″, she says. So I ask her, “Do you think this CT is absolutely necessary?” …and of course she says, “Yes.” I’ve asked that question every time I am asked to have a CT, and never ever has a doctor said, ‘Oh, well, now that I think of it, maybe we can do something else.”
When I got back, the IV ordeal began. The first tech poked me three times before she gave up, even though I showed her where most phlebotimists have had good success getting a vein. Then the doctor came back with an ultrasound machine, so he could visualize the vein before poking. Even with that, it took him three different tries to get a good line. This did not instill any confidence in me whatsoever. After that, I was given a small amount of pain meds – that did jack shit – and sat waiting for almost two hours. Also, after I witnessed my doctor put the needle in, then reach to a shelf with the same glove (thus contaminating the shelf) in a very habitual manner (which means this has happened before, with other patients), I asked him to change his gloves before he proceeded. In every other medical situation I’ve ever experienced, a request to wash hands or change gloves has been met with immediate compliance and no questioning. This doctor, on the other hand, looked confused and angry, and tried to explain to my why it wasn’t necessary. When I tried to point out how he was wrong, he copped an attitude and stripped the gloves off in a way that clearly communicated “I totally don’t want to do this, and I’m angry you asked”.
After this, a brand new doctor comes to see me – maybe because of the glove issue, since I saw the first doctor still there. This part is going to make me seem less PC, but I hate doctors who can’t speak English well enough to be understood. This new doctor was some flavor of Asian, and I couldn’t understand her at all. I had to have her repeat herself three or four times, and then I would try to restate what she said to make sure I got it right. I was told I had a PE, or pulmatory embolism, which is a pretty fucking big deal, life and death stuff. She told me I would be admitted for observation and for further testing. I didn’t feel I had a choice, since I had a PE, so I agreed.
One of the big things about Meritus that makes it a bad hospital is that the ER is the nicest part of the hospital. Once you get admitted, you’re shown through hallways and rooms that are old, dirty, not well kept, and feel depressing. Not that I’m usually overjoyed about being in the hospital, but many decorate the rooms so it seems a little less like you’re in a prison. This fact was made sadder when I found out that the hospital had been completely renovated only a few years ago. I was put on the “observation floor”, and considering how little actual “observation” I recieved, this misnomer should probably be changed.
I was brought a meal I couldn’t eat much of, and then the nurse chastised me for not eating more. When I explained to her I had food sensitivities that made most of this inedible, she told me that she would talk to someone in dietary to come up and discuss better food choices. Not only was it inedible because of my diet, but it was also completely unappetizing. I am pretty sure their miniscule portion of scrambled eggs were from a powder, having eaten my fair share of powdered eggs in my time. The only thing I was given to drink was coffee, which I can’t have because I am sensitive to caffiene.
During the intake, I was never asked about what meds I take. However, I was grilled at length about every single personal item I had brought with me. From my glasses to my underwear and my wallet to my Nook. I stopped at one point and asked the nurse “Is there a lot of theft in this hospital that makes this necessary?” She looked sheepish and said, “Oh, no, no.” But it did come across as though they were much, much more worried about someone stealing my phone than knowing what meds I take or what medical conditions I have. (Which no one ever asked me except at triage, and that was from a set list, which didn’t include many conditions I have.)
Then I spent hours just sitting around. No tests, no doctor visits, no pain or nausea meds, nothing. Finally, Rave started chasing doctors and nurses down to find out what was going on or to ask if I could have more meds. This is when we both directly observed hospital personnel, on several occasions, sitting around talking amongst themselves about non-medical subjects (at least twice we saw really obvious sexual/romantic flirting going on).
Also, there are signs on the walls everywhere that informs you that personnel have smartphones, but “rest assured they are not being used for personal use, but to enable communication in the hospital”. Although I applaud hospitals experimenting with new tech to facilitate better care, these were the most annoying thing in the world. The problem was not the phones themselves, but that caregivers (at every level, from techs to doctors) would always answer them. No matter if they were in the middle of administering a test (like the CT), or explaining your health status, or while you were trying to explain what you were feeling so they could treat you. It’s like all of the bad habits of smart phone usage in the general public in a condensed form. It was so frustrating.
When I asked about my home med schedule, I was informed that I should take them from my own supply (which I always bring with me to the hospital, but not everyone does). Later on, a nurse or doctor (I was never clear on who was who, since no one introduced themselves to me, ever) flipped out about this, and demanded me to both list every med I took, and that I have Rave bring my med bag home at the first chance. Since they never gave me any of my maintenance meds while I was there, I’m glad we didn’t. It took forever to get any meds from the nurses, and every instance was treated as though I was being totally unreasonable for wanting nausea or pain meds. There are big posters that proclaim that they have a committment to treating pain, but my experience was the exact opposite. And this wasn’t the typical, “Wow Del, you’re on a really high home regimen of pain meds, so we don’t want to give you any more”, because I am on (comparatively) much, much less pain meds than I was a year ago.
Finally, after waiting over 6 hours for the cardiologist to come (even though the other doctor said everything about my heart looked just fine, which was suspect in itself since I have heart problems they never asked about, like an enlarged heart), having been assuaged that I was next in line at 9am and it was now 3pm, the hospitalist came in and I asked her if there was any reason for me to stay in the hospital if everything looked good. At some point, the fact that I was told I definitely had a PE kinda went away, as no one else had heard this when we asked. Also, the fact that I had been told I was to be given a diruetic since my legs were swollen never happened either. So at this point, I see no effing reason why I needed to stay any longer. The hospitalist actually agreed with me, but asked me to wait a little longer so the cardiologist could sign off on my discharge.
The hospitalist came back about 3 minutes later and said, “Oh, he won’t be able to get to you for a while, so you can just go home.” She took out my IV and told me she’d be back in a minute with my discharge papers. 10 minutes pass. 20. Then I decided to put on my clothes to make it clear I was leaving. A phlebotomy tech comes in and tells me I need another blood test. I tell her I was told, definitely, that I was only waiting for papers to be discharged. She, very confused, went and talked to the doctor, the exchange of which happened right outside of my door. The phlebotomist was clearly of the attitude that I was just being beligerent, even thought I had been calm and collected (no matter how angry I was at this whole fiasco) when talking to her. The doctor comes in and says, “Oh, you need to do this test before you can be released”. I said, “No. You said I could go home now, and the only thing in the way was getting the discharge papers. I’m holding you to that.” She shrugs and says, “well, we don’t really need it anyway.”
As one last “Fuck you, Del”, as I signed my discharge papers, the nurse pulls out a “Against Medical Advice” (or AMA) document. This is what you have to sign if you leave a hospital when the doctors have clearly told you you shouldn’t. She tries to quickly explain that because I refused to stay for another test, I had to sign myself out AMA.
“Bullshit.” Was my answer. I refused to sign. This means that if I ever go back to that hospital, I will be marked as a non-compliant patient, which definitely affects the care you receive. But you couldn’t drag me back there if my life literally depended on it.
There was one moment of levity, though. At one point, a tech came to put on the EEG machine and started using masculine pronouns. The nurse or doctor who came in heard this and tried to correct the tech. The tech looked at me and my only answer was “I chose a gender-neutral name for a reason!” For the rest of the exchange, the tech used male pronouns while the doctor/nurse used female ones. It was amusing.
But not amusing enough to make me ever want to go back there. Or send anyone I care there if they need more than stitches. I will find a better local hospital, or I will endure the drive to JH.
I get a lot of odd search terms (what people put into a search engine and find my blogs). But one of my all time favorites has been “If I eat a crow, will I get sick?” I mean, it’s a good idea to check before diving into strange meat to see if there are any standard precautions, y’know, like not eating raw chicken. And honestly, I’ve never done the homework to find out the answer to that time-old question. I mean, I figure any source of meat, if thoroughly cooked, is probably edible.
But that’s not what I wanted to write about today. It is, however, a someone apt title for my newest and most amusing symptom.
I know it’s been a long time since I’ve updated you guys on my medical situation, and part of that is because I’m in a state of limbo; a brand new, completely different, confounding medical problem has become the star attraction. I’m wary to say too much right now, because it’s in that stage where my new PCP just spouted a lot of guesses based on what they saw in my bloodwork and some of the things are game-changers. I’ll put it this way: the person who accompanied me to the appointment disagreed with my remembering of what the doctor said, so to be extra clear that I wasn’t worrying over nothing, I emailed her and got some clarification (I was right, if that matters.)
So the new issue is my blood. There is something funky with both my red blood cells and my white blood cells. The only white blood cell disease that has been ruled out is leukemia. The red blood cell problem is likely just anemia; but the biggest symptom is what I want to write about because I find it so damn funny.
Pica is a disorder I’ve found endlessly facinating since I was a child. I have even devoured every episode of “Strange Addiction”, as most follow a formula of “Person who does weird thing” followed by “Person who eats a nonfood substance” (like toilet paper, bathroom cleaner, or cornstarch). I once even asked a friend about a trend on the show, where African-American women were in the majority of the latter-half segments. She told me that, indeed, pica is common in African-American women (as the wikipedia article says), and that she herself had tried eating a non-food item after an errant craving.
My pica snuck up on me. Normally, when I’m at home, I don’t use ice in my drinks unless, for some reason, I have to drink water. (I really dislike water unless it is very cold.) But as the dog days of August came in, I started filling up my ice tea tumbler with ice cubes before adding the tea. Once the iced tea was gone, I would suck on a few ice cubes and maybe bite them so they would break into smaller pieces (making them easier to suck). As time wore on, I was putting less and less iced tea into the cup, and just filling it with ice so I could eat the ice. I didn’t think of this as “eating ice”, though; I still thought I was drinking iced tea.
It got to a point where I could no longer deny that I was now skipping the iced tea entirely and just eating huge cups of ice. I would wake up in the middle of the night because my craving for ice was so strong. Instead of pouring myself something to drink with meals, I would just pop an ice cube in my mouth every once in a while. Finally, Rave noticed the trend and decided a) this is a “thing” now, and b) we needed to get smaller ice cube trays so I didn’t break my teeth or hurt my jaw.
It seemed pretty harmless. I figured that it was, at the very least, upping my water intake. Almost every time I’ve been to the hospital or ER, I’ve been dehydrated. The last trip, in August, I was so dehydrated my urine was reddish orange. When I get in pain, I stop drinking. I don’t know why, but I do. And when I am super nauseous, the only liquid intake I can handle is ice, or water with a lot of ice.
It became such a habit that I would fill a mug with ice before going to bed, both so if I awoke wanting ice it would be there and so I could use the water in the morning to take my pills. Rave now makes sure I have a cup of ice at hand most of the time she is home.
I saw the doctor last week and I first brought up the restless legs. It is a symptom I get any time I go into opiate withdrawal, but I am currently on a low dose oxycontin regimen and have no withdrawal symptoms other than the RLS. It’s so bad that there are full nights I’ve lost sleep because every time I laid down I would reflexively start rocking my legs. Even when I’m sitting up, I get this crawly energy that runs up my calves. Nothing else relieves the sensation but moving my legs. I do use my foot bike when the feelings are overwhelming, and the fact that is has a backup motor (so if I don’t have the power to push the peddles against resistance, my legs will still go in circles) is super helpful in those times, especially at 3am when I’m exhausted and just want to go to sleep.
Between my odd bloodwork numbers and the RLS, she was already thinking that something is up. When I told her about the ice, it clinched it. I basically have all of the markers of iron deficiency. So that’s in the works.
However, the pica has “grown”, I guess. It’s hard for me to admit this, but I am trying to keep a lighthearted sense of humor about it because otherwise I would probably freak out to the point of uselessness. In the past two weeks, I’ve had cravings for dirt (another classic pica symptom), cigarette butts, and wanting to chew on wood. I have not given into any of these for obvious reasons, and when I get the odder cravings I just get more ice and eat that until it passes.
I am not at all concerned about this being some sort of mental health issue, because if there’s any disorder I know for certain I do not have, it is OCD. I am not autistic, nor am I eating ice in some odd way of getting attention. In fact, I prefer to eat my ice in my room alone.
I also learned that pica gets its name from the Magpie (another reason why the Crow thing seemed appropriate) because people observed that magpies will eat just about anything.
So there it is. Maybe this is some odd coincidence, since I’ve always been fascinated with pica. I had a dog with pica when I was a kid, who ate all sorts of nonfood things. Now I know what she was going through, I guess.
I should know more about the blood issues in a week or two. Longer, of course, if they turn out to be more serious and require further testing.
…and the diagnoses are the spaghetti.
Still at Johns Hopkins, and it looks like this trip is going to end very unsatisfactory. After being absolutely certain that the problem lied in my kidneys, they have now ruled that out completely. I don’t really understand how, as some of my symptoms are unmistakeably kidney related, but the doctors assure me my kidneys are just fine, other than the small stone that is “in a place I shouldn’t be able to feel it”.
So today’s crazy noodle is some sort of lung issue combined with neuropathic pain. The chest x-ray they took showed that part of my right lung is not getting as much oxygen as it should. Of course, this could easily be explained by the fact that I’ve been having crippling flank pain for over a week now, forcing me to take shallow breaths, but of course that would be too easy.
From what the doctors said, it looks like their plan is to run a few more tests, let a few test results come back from the lab, but otherwise begin the transition towards discharge. They’ve already lowered my pain meds; normally I’d be cool with that, except around dinnertime I got another giant stabbing, burning pain in my flank and now nothing the nurses can give me helps at all. I spent most of the night sitting still in the chair, trying hard to find a position that doesn’t make me cry. Gah.
What really upsets me though, is that the doctors are already talking about how I should chase this problem down as an outpatient. However, and it’s not their fault, but I can barely keep up with all the doctor’s appointments I have now. Between not having a regular driver who can bring me from Hagerstown to Baltimore, not feeling well enough to leave the house, not having the money to fill any more prescriptions or other medical shite thrown in my direction, I don’t know what the hell I’m going to do to chase this down. They’re talking about attempting an MRI again, although this doc says she knows of a few machines that might accommodate me better than the one here. The intern stopped by this evening and asked me a bunch of questions that were dancing around the idea I might have MS: this is one of the most bandied about diagnoses I’ve heard since this all began, but the diagnostic criteria are either a) spinal or brain lesions on an MRI or b) ruling every other disease on the planet out first. I might actually be getting close to the latter, these days…
But I have to say, this hospital stay has been exceptionally hard on me. It’s a combination of factors: I’ve been alone more; every time I feel like I understand what’s happening with, and to, me the rules change; I’m in the “historic” building this time (if you think the 1970′s were “historic”) and the room isn’t as cheerfully appointed; I haven’t been able to eat or sleep like a normal human being in more than a week; oh, and let’s not forget Dr. Laing’s shenanigans. I can’t recall if I’ve ever secretly planned to sneak out of a hospital AMA before.
I also am feeling this crushing weight on my heart because, for so many years, loved ones were pressuring me hard to seek out Johns Hopkins in hopes they would be able to solve the greater Del mysteries. Now that I’m here and in the reality of it, people are constantly asking me why. Or why I haven’t moved on to somewhere else. Here’s the truth of it: it’s really not that easy for someone like me to up and move all of his health care around. I mean, I’ve been in Hagerstown for just about a year and I still have at least one doctor in Germantown I have yet to find a counterpart for. Getting my pain management shit transferred was a big deal (although, another benefit of having suffered through the wean is that if I don’t like what his next move is, I can likely find another pain management doctor fairly easily now), and now I have a huge amount of data here referring to my abscess adventures.
In fact, I debated going to the Hagerstown ER when the flank pain didn’t get better. I figured any hospital worth it’s weight should be able to heal a kidney infection, right? But the more I thought about it, the more complicated it got. We’d have to get all the office info for my JH doctors; they wouldn’t have any of the information about the abscesses; they would have to get all my CT results so they could compare now with before; and of course now that we know it isn’t a kidney infection but something more difficult, I’m glad I didn’t.
I have decided, however, that I am using the next few weeks as a time of omens. There are some big questions on my plate that I have been very slowly compiling data on, and depending on how this plays out some of those questions will be easier to answer. For example, if one of the doctors decides to go gung ho on finding MS or something like it, I would be more likely to invest and take the long route. And that’s all the hint you’re going to get.
But for now, I have to figure out how to sleep when my back and side on are fire.
This is going to be difficult to write. I almost never use trigger headings (warning people about potential upsetting topics), but this post deserves one: Trigger Warning: discussion of sexual assault, abuse of power.
There is also an anatomical image of a vaginal opening further down.
I’ve posted to Facebook my frustration over the way doctors have been tossing potential diagnoses at me left and right. At various points in time, I’ve “had” a kidney infection, an abscess on the kidney, a blood borne infection, another abdominal abscess, kidney stone(s), a pelvic infection, etc, etc.
In the course of this, I am being seen by an intern, Dr. Laing. (I am guessing on the spelling. Please note that I rarely use doctors’ real names on this blog, but for him I am making an exception.) At the time, I do not know that this is only his second day on this rotation (although he’s done it once before). He is a charismatic young doctor who looks like he’d make an excellent background character in a college library or Revenge of the Nerds movie.
Dr. Laing stops in and begins to ask me some sexual history questions. As y’all know, this doesn’t phase me at all. He is vague at first, when I ask him how this could be related to my problem. Then he tells me I am getting a pelvic exam to rule out STIs, and other problems with my magina area.
As someone who has experienced real, documented trauma at the hands of a crappy gynecologist, as well as someone who has psychological issues with strangers mucking with his bits, I start to feel a little panicky. I take a deep breath and start trying to make the situation as comfortable and “safe” as I can.
I start by asking for a female doctor to do the exam. It’s not that I have issues with male GYNs, really. I find informing a female GYN of past trauma translates into a much more compassionate and gentle experience. Dr. Laing says he will look into it; a few minutes later he returns to say he couldn’t find one but that there will be two female nurses in the room. I am unhappy (especially since it felt like he only spent a minute looking for a female gynecologist before giving up) but shake my head and accept that the intern will do my exam.
It helps the story to remember at this time that my chief complaint is severe pain in and around the kidney area on my back and side. Dr. Laing informs me we’re going to do the exam in my room, and I am surprised. I ask why we aren’t going to an exam room with, y’know, stirrups and shit. He assures me it’s going to be quick so there’s no need. He is, in fact, surprised that I am surprised.
I should have known something was going awry when he asked a nurse to get all the necessary tools, and when she arrived with them she had to give him a rundown as to what was there. I had requested he use a pediatric speculum, since we weren’t doing a pap smear or anything requiring more than a glance at my cervix. This, too, he pretends to accommodate, by leaving the room for a minute and returning empty handed. I happen to know that JH has an extensive pediatric unit, and I would bet something large that it has at least one peds speculum.
Finally, I carefully lay down, yelping at the pain in my side. Keep in mind, I hadn’t slept in 3 days because laying down was uncomfortable no matter what position – and he knows this. He decides to use an upturned bedpan to raise my hips a little, which digs into the most painful area on my back.
People are probably wondering why I haven’t refused to continue at this point. Again, I mention that the doctor is very charming, and I am honestly afraid that if I really stand up for myself I will get substandard treatment. Also, it bears mentioning that I have been the victim of sexual assaults, one of them perpetrated by a doctor. So being in this situation has already flipped me out emotionally and so I focused on being physically compliant as I could.
I lay down with the bedpan digging into my lower back. We mess around with the positioning of my legs. I am making a constant stream of pain noises and am trying not to squirm. He informs me we’re going to start with the speculum. This is not the tack I would take with such an exam; those of you who have played with vaginas know that it’s better to start with something small and work your way up, rather than the opposite. I accept my fate with a sigh.
This is when things start going downhill fast. He parts my labia and immediately pushes the speculum against my urethra.
As you can see, that’s like aiming for Manhattan and ending up in Staten Island. They’re connected, but not the same thing. Because I am in a fair amount of pain already, I just flinch away and try to close my legs. He takes this as skittishness and tries to relax me. I am somewhat non-verbal, which is exacerbating the issue. He attempts again, and this time I feel him trying to open the speculum as it is resting painfully on top of my urethra.
I react again, and this time he decides that this isn’t working so he’s going to skip to the manual exam. He says his objective is to palpate my ovaries. I tell him that many GYNs have tried to palpate me in this matter and have been unsuccessful. (My ovaries happen to be hiding in an area of my body with a lot of fat tissue.) He asks me to give it/him a try, so I sigh and nod.
Unshockingly, he takes two fingers and presses them against my urethra. At this point, I say something like, “That’s my urethra you’re trying to penetrate.” He apologizes, withdraws his hand, and then returns to push painfully against my…clitoris. That’s right, this newly minted MD thinks the vaginal opening is above the urethra rather than below it.
Let’s just skip ahead. He fails to palpate my ovariesm (not for lack of trying!), and by the time he’s done I think he knows he’s fucked up. He leaves without saying anything to me, which was good since I was crying. Both nurses who were there were shaking and holding their tongues until he left. It was validating to see and hear that the nurses were as concerned and frustrated as I was. One nurse in particular, who was my assigned nurse, went to great lengths both immediately after, and for the rest of her shift, to comfort me. We sat and talked about our lives, she brought me super secret nurse treats, and she let Rave and I go for a walk for half an hour.
Later that evening, the attending (Dr. Laing’s bosses’ boss) and the resident (Dr. Laing’s boss) came in to hear my story. I stressed that this was not a “OMG gyno exams are hurty” complaint, but a “he really should have known the difference between an urethra and a vaginal vestibule” sort of complaint. It turns out that Dr. Laing assured his attending that he had done several pelvics before; the attending wanted Dr. Laing to have another doctor assist him, but Dr. Laing went rove and did it on his own. The attending assured me that I would not see Laing again, ever, and that the attending would take a special interest in my case.
He also gave me the lowdown on what’s been going on. As I’ve written before, it seems like possible diagnoses are spaghetti strands and I’m the fucking fridge. I might or might not have had or currently have:
- a kidney infection, otherwise known as pyleonephritis
- one or more kidney stones
- an abscess on my kidney
- a third reoccurance of an abdominal abscess
- a peritoneal infection
- an STI or other reproductive issue
- ovarian cysts
- any two of these in combination
The attending assured me that we were only looking in two directions now: we can actually see the kidney stone, but it’s resting on the bottom of my kidney where it should hurt the least. However, I’m not acting like a kidney stone patient. Second, there have been a ton of white blood cells in my urine, which screams “INFECTION”; the current thought was that I had an infection of the bladder.
This meant that right after I had come to peace with the pelvic-from-hell, I had to let yet another stranger muck about in my cuntal region (or is that “cuntle”?) and do something painful. I tried to advocate doing it the next morning, but the doctor really wanted the results tout suite. (heh.)
Anyway, back to the conversation with the attending about Dr. Laing. We agreed I would never have to see Dr. Laing or deal with him in the future, and I further pushed that if I saw him again, I would scream and shout. This ultimatum, in addition to a bevy of other complaints, served me well. I haggled over pain meds in my negotiation about the exam for my bladder and won. I decided to push my luck one final time, and asked him for a standing order for a little extra pain meds when I was particularly hurty. (Otherwise, the process is kinda long: I have to complain to a nurse, who then has to call the on-call service doc and explain the situation, and sometimes that doc has to call my actual doc to verify that whatever I’m asking for won’t mess anything up. This can take up to several hours.)
So a few hours later, three very kind but nervous nurses came in to do the straight catheter. See, when you pee in a cup, sometimes you leave behind skin, hair, or other contaminants in there too. Getting a urine sample straight from the source eliminates a lot of that cross contamination. I know I have friends who get cathed for fun, but I am not one of them. Maybe my urethra is too narrow, or I just don’t enjoy penetration in that way. I was shaking the whole time, but my awesomesauce nurse held my hand and told me funny stories fro her life to distract me.
So that was yesterday. Today’s song is in a different key, a different time signature, a different genre.
From what I understand, we have definitively identified the following diagnoses as being accurate and applicable:
- one kidney stone, resting in the bottom of my kidney
- an infection, somewhere in my abdomen
- severe dehydration, and even IV fluids aren’t doing much to fix that
- severe pain in my right flank, that is very sensitive to touch?
However, I have symptoms that are not explained by any of that. So now comes the oddball testing, starting with an echocardiogram this afternoon. I’ve been assured there were be no more pelvics, though.
I’m trying very hard to ignore the fact that three different phlebotomists have tried to take enough blood for a blood culture and failed. One couldn’t find any veins, so he walked away without playing Bingo! first. The second got a good vein, but it was pushing very slowly and meekly, so they only got enough for the little-bottle tests, not the catheter test (knowing the name would likely help).
I keep trying to explain to my doctors that my medical situation, whether it be short term or permanent (anything in between is more likely), is never black-and-white. Now he can order those wacky tests the hospital wants to try out. My nurse keeps telling me I’m scheduled for an echo (which I’m pretty sure is a heart test) this afternoon.
There has been some upsides: The nurse I had yesterday when all this went down, she and I bonded a lot. We sat and talked about my separation, and my relationship with Rave, and teaching adults about sexuality; she talked about some of her past struggles and what it’s like serving the homeless population in East Baltimore.
Um. There has to be more upsides. I have my own room? (in the dingey, “historic” building) Well, I do like my ID doc – who is actually the boss of the ID doc I am seeing at their clinic. I like the resident and attending of Dr. Laing, who are caring and considerate when touching me. I am pleased that they’re taking my pain seriously, and not dismissing it outright when their theories on what’s causing it don’t pan out.
People have been asking how long I’m going to be here. The only clue I’ve been given is that the attending would be happy if I wasn’t here when he gets back on Sunday. However, some of the tests they are doing today take two to three days to finish, so something tells me I will still be here Sunday. How much longer after that, I have no idea.
Hey, I’m allowed a painful pun, as I am hopped up on the goofballs.
What I mean by that is, I am currently in Johns Hopkins emergency department, waiting for a bed to open up so I can be admitted.
This starts about eight days ago. I started peeing a lot – like 10-15 times an hour – and then the nausea hit. I was getting very little sleep, like 3 or less hours a night. Then my kidneys started to hurt, and I decided it was time to get thee to an ER.
Long story short, they debated admitting me then, due to my history with infections, but decided against it. They gave me a new-to-me antibiotic and antiemetic and turfed me. I mean, I am not a fan of being a patient, but it did muddy the waters some.
I was scheduled to make a work-related trip, 10 hours by car from home. If the docs told me it was no big deal, I could go without worry. If they admitted me, there was little I could do about it. But telling me that the infection *usually* merits a stay, and then setting me free, made things tough. I felt pretty crappy, but this trip was extremely important for both professional and personal reasons. Even so, I was totally looking for some external source to give me permission to cancel. I asked for and received three forms of divination, hoping to be told I could stay home.
In the end, I decided to pray. As the trip was partially in service to two of my most important gods (Loki and Hel), I prayed to them. Send me a sign, a nudge, a way to know what you want. If you want me to go, give me the spoons and energy to get packed and be ready for the trip by the time we need to leave.
The first thing that happened was, I felt an overwhelming urge to shave my head. I had been growing it out for some time and it was actually getting pretty long. But if it were up to Loki, I would be bald all the time. At first, I thought this was him taking advantage of my weakened state, but as the hair started to come off, I realized for the first time how much I felt literally weighed down by my hair. It was stringy and frequently damp from my night sweats. And I wasn’t particularly happy with it.
I also realized right away that my God phone was in much better working order. This helped me understand Hel’s point of view on the matter – that sometimes, you have to choose the riskier path to make life worth living. frequently, I make choices that rock my boat the least.
So even though I had no idea what would happen, I got my shit together and made it to MA in one piece, more or less.
While I was there, I was keenly aware of not feeling well, but had much bigger shit to think about. My wonderful boyfriend and devoted girl did everything within their power to help me get through it.
We knew there was a price to be paid as soon as we set sail for home. My symptoms went haywire. BY Monday, I was puking up my meds again. So after some discussion with some of my doctors – who, by the way, were pretty damn pissed I didn’t get admitted the first time – I limped back to John Hopkins ER.
after a grueling 6 hour wait, I was brought back and immediately shit got real. They’re sure I have a kidney infection but it’s obviously worse than first thought. now they’re doing additional tests, because some of my symptoms aren’t quite what they expected, and now they’re hunting to see if I haven’t developed an abscess on or around my kidney. yeah, that’s what I said.
So here I am, alone in JH ER waiting for a bed to open up so I can be admitted. The plan is, at the least, high test IV antibiotics (since I can’t keep my meds down) and aggressive abscess hunting. The hard part is that I’m alone. Rave spent all available time off to go to MA,and then stayed awake all night with me here. I’m waiting for a friend to come help me – I get confused and distracted in hospitals.
I do. Not. Regret my choice to go. I just, as Winter put it, can’t catch a fucking break.
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.