Sometimes it feels like I’ve only been in the hospital for 3 very long, very blurry days. Other times I feel like I’ve been here for six months already. I know all the different nurses and techs by their first name (and have nicknames for most of them, like Nurse Anxious or Nurse Snake). In reality, I’ve been here for 14 days exactly.
My days are pretty similar and rote. A nurse comes in at 6am to give me meds and get my vitals. Usually they drag the scale in and weigh me then, too. There’s no use in trying to go back to sleep, because the parade of phlebotomy, examined by the day’s attending doc, breakfast being delivered, the rounding doctors arrive, and then it’s 10am. Even if I do get back to sleep, the whole circus begins again around 1pm, this time with the additions of specialists like physical therapy or IV tech or whomever else wants to talk to me. On and on, I sleep for 10 minutes here, half an hour there. The doctors begin to notice I’m not getting enough sleep.
That might have something to do about me falling out of the bed.
One of the odd symptoms that people with untreated or undertreated sleep apnea develop is falling asleep sitting on the edge of the bed. Many of them don’t remember sitting up or moving at all, others catch themselves nodding off a few times but you don’t think about laying down (at least I don’t). You begin to rock back and forth and usually sometime in this process your hips and back go cataplectic (go limp) and if you’re lucky you wake up as you fall backwards onto your bed.
In this particular incident, I do not remember sitting up, waking up, nothing. I only become aware that I am falling and I should go limp so I don’t break anything. I don’t even have proof I fell from a seated position, and in fact by the way I landed I’m not sure I did. But at the time, I was just aware that I was on the floor, tangled in both my catheter and oxygen tubing. Oh, and somehow in the fall my gown fell off, so I’m buck naked.
The fall made a fair amount of noise, at least from my perspective. However, my door was shut and I didn’t hear anything that resembled the “OMG A PATIENT JUST FELL OUT OF BED” alarm I assumed they implanted in all their patients. In fact, I began to become aware that my call button was back in the bed and I didn’t know if I could reach it without pulling on the tubes I was tangled in. I had just started slowly pulling myself towards the bed when the night tech randomly decided it was a good time to check my foley output. Instead she finds me on the floor, naked, looking pretty damn shook up and twisted up in my tubes. It takes her a moment for her brain to get over the surprise and call the nurses.
So yeah, I think everyone is duly concerned about my lack of sleep. Last night they brought in a BiPAP for me to use. I thought of BiPAPs as being the bigger, badder brother of a CPAP. Something that looked like this:
Or maybe this:
But what came through my hospital room door was this:
Needless to say, I was a little intimidated. However, the night went okay. It wasn’t one of those “Oh What a Miracle!” mornings that some people get when they try CPAPs or BiPAPs, but I slept uninterrupted for at least four hours, which for this joint is like a record.
So when are you coming home?
Nobody knows for sure. I could easily be here for another week, or less, or more. The doctors are basically waiting for my body to say “Whoa there with the pee storm!” – there’s something your kidney does when you’re “done”, and they’re waiting for that to happen. I am making remarkable progress – I have lost over 50lbs of water weight. That’s an average of 4-5 liters a day. I have been taking in less than 2 liters of fluid (believe me, not fun for a fat kid who was raised on the idea that you can always drink all the water you want).
I am going to end with the totally predictable link to my medical-needs Amazon wish list. Let’s pretend I’ve done the “I really hate asking for things and I know I’ve asked for a lot already” dance and you’ve followed with the “Del, it’s okay, shut up already.”
It has been updated to reflect things that will be handy when I come home from this stay.
Again, thank you to all of my friends, followers, supporters, family members, for all the things you do. I appreciate every prayer, every email, every small gift, every visit, every odd chat session, every “thinking of you” e-card, etc. Thank you.
It’s now been officially a week since I have been admitted to Johns Hopkins. Although Rave and I both had tingly spidey-senses that a hospital trip was close at hand, we had no idea what we were in for.
I have been slow in telling people why I’ve been admitted, primarily because I’m still wrapping my brain around it and the effects it will have on my life going forward.
I have congestive heart failure. Specifically, right sided congestive heart failure, which is the rarer of the two. The doctors believe it was caused by my obstructive and central sleep apneas – a long story about which I am saving for another time.
I am requesting as strongly and seriously as I can that you do not ask questions or offer information (especially anecdotal or third-party info) about the causes, treatments, lifestyle adjustments, etc. THIS REQUEST PERTAINS TO THE INTERNET EVEN MORE SO THAN IN MEAT SPACE. One of the reasons I’ve been hesitant to post about this is because I am really not in a space to hear suggestions from everyone as to what to do next.
My second impetus for this post is more practical. In a perfect world, Rave would be here with me 24/7 until I was discharged. In the past, she’s done her best to attempt it but graciously accepted when she needed other people to step in. This time, things are much more challenging for us both as a unit and as two separate people.
What would be of help is people who could come and spend an entire evening with me (Ernie and Cookie Monsters may be warded against if necessary.). Throwing us a tank of gas (there are better turns of phrase, I’m sure) or helping us obtain parking passes. Specifically making plans to pick Rave up and take her to do de-stressful things. Rave may have some other ideas, and you may come up with ways to help that we didn’t think of.
I’m only going to add this next bit because I feel it’s necessary no matter how many times people have said it is not: Thank you from the bottom of my heart. We both loathe asking for assistance, especially with how generous our tribe has been for us, and we would NOT be asking if we saw many other alternatives.
Here’s the thing – I may be in here for another full week. In fact, that’s on the low end of the spectrum. It’s one of those visits where there is a goal to be met that can’t really be influenced by willpower or any kind of effort.
If you feel you want to help, contact us using our shared email address – delandrave @ gmail . com.
This is a wonderful article about how we lack the kind of language we have for love, jealousy, and other human experiences, for pain. We have moved away from seeing pain as a spiritual experience as medical science has learned how to dull it past the point of overwhelming sensation (at least some of the time).
What language do you use to describe your pain? Do you use the same words with your doctors as you do with your loved ones or caretakers? Are there works of literature that you feel expresses the kind of pain you experience, or details what it is like to be in acute or chronic pain?
The following is an incredibly well executed essay on how doctors, naturopath, and Internet hoo-has completely misunderstand the role of weight, obesity, and nourishment in fat patients. Long time readers of my blog will hear echoes of things I have written about here, but I appreciate the ability to share someone else’s story, especially when that story took courage and steadfastness to post.
Originally posted on Ballastexistenz:
This isn’t a post I like to write. The idea to write it always comes after someone, who is not communicating with me in good faith, approaches me and makes snide remarks about how I can possibly need a feeding tube if I’m fat. Except they usually go beyond calling me fat. They usually make some reference to my weight that makes it sound like I’m unusually fat, just to make things worse. In one case, a known repeat cyber-bully (he has made threatening phone calls to a friend of mine — if I’d recognized him on sight I’d have deleted his comment unread) even told me he’d lost some relatively minor amount of weight during the course of a disease I don’t even have, and that therefore since I was still fat, clearly I couldn’t have any of the diseases I do have. It’s clear that most of the…
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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.
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.
It’s been a while, hasn’t it?
It’s my fault, of course. Not just because I am the blogger in the equation, but because the current health struggle is complex. Probably the most complex since the surgery last December. It hit me at a very inopportune time, and has been one of the most difficult depression triggers I’ve dealt with. I am hanging in there, doing my best to keep pushing and keep living and not give in to inertia, shame, fear, and pain.
Part of why I am writing this post now, why I have come out of the dark, is that I need you. I need allies in my current situation. I need people who know what’s going on to answer the questions and comments people will make behind my back. I need people who will understand why I might be making different decisions, why I might not want to talk about certain things, and why I might walk away from conversations that stir my turbulent emotions any faster than they’re already dizzying me. My work “season” is about to begin, so hiding at home is no longer an option.
Here’s the story, as best as I can relay it. Back in early March, I noticed my legs and ankles were getting very swollen. I had never understood how much vanity I took in having slender, muscular calves and feet until I didn’t have them anymore. I also developed shortness of breath, even when doing the smallest things – I would take the six steps into my bathroom and have to recover. I started having a deep chest cough, so I thought maybe the breathing problems were just a portend to a chest cold/bronchitis/etc. These symptoms progressed, getting more and more difficult to function. It felt like someone had wrapped my chest in an ace bandage.
The next symptom is the hardest to write about, so bear with me. I have these two pairs of jeans that I call my “jeans of requirement” (a vague reference to Harry Potter). These pants fit me for the last ten years, from my heaviest through my medically unsafe weight loss and back again. For some reason, the way they’re cut or something, they might fit differently, but I could rely on them. So you’ll understand when I tried to put one of them on, and could not fasten the button, I was downright scared. I took a deep personal inventory to examine the possibility I’d gained so much weight that they just wouldn’t fit, but in the end I know I’ve been eating well, getting up and moving when I can, and hadn’t been particularly laid up more than usual.
Then we noticed that this was happening all over my body. My feet became so swollen my shoes didn’t fit. The skin on my calves and lower thighs was stretched so tight, the smallest touch was painful. My fingers and arms were also chubbier than usual, and finally when I saw pictures of my face I noticed that even my neck and cheeks hadn’t been spared. I got really, really scared.
I started a new round of doctor’s appointments, and the first thing that gave me a little solace was that my doctor confirmed that I was suffering from edema (swelling), and specifically anascara (swelling that happens all over your body). It is most pronounced in my lower abdomen and legs/feet. It was also determined that my shortness of breath was because of the swelling putting pressure on my lungs and diaphragm, making it harder to get deep breaths. Swelling like this is a big symptom, but it could have hundreds of reasons, so this is why if you follow me on Facebook, I’ve been going to a lot of doctor’s appointments lately.
To put it in perspective: one doc’s estimation after looking at CT scans of my body, is that I am currently carrying 50-70lbs of a combination of fluids in my body. This is not “I am PMSing and feeling kinda bloated”; this is “The pants I accidently ordered three or four inches too big are all I can wear now, and even they are tight.” None of my shoes fit comfortably. I had to buy special socks because normal ones were causing deep indents in my ankles.
I had some hope in the beginning that this would be more straightforward than my other medical mystery solving tours, but that’s been shot to hell. I’ve basically been the hot potato that various specialists throw at each other. And like any other mystery solving tour, doctors find other things that aren’t related to the issue but need to be addressed – one highly suggested I see an ophthalmologist to rule out edemic pressure on my eyes causing my double vision, but it turned out I’ve just had a lazy eye since childhood that no one ever diagnosed so now it’s bad enough to cause most of the weird eyesight I’ve had lately. The eye doc wants me to follow up with a different specialist, but obviously that’s been put on the back burner for now.
Another reason I haven’t felt like narrating this part of the journey is that many, many different possible diagnoses have been suggested and/or tested for, and most of them are pretty major/life changing kinds of diagnoses. Since I’ve already told a handful of people, I guess it’s safe to say that 2 kinds of cancer are near the top of the list right now. But I don’t want to be the boy who cries cancer before any solid diagnosis has been made. I can say that heart failure and/or other heart problems have been ruled out – my ticker seems to be doing pretty well, all things considered.
When it comes to real life stuff, the swelling has killed any sense of self-esteem I usually have in abundance. I look fatter than I have ever been my whole life. Even having seen the images that prove the “weight” is NOT fat tissue didn’t really help. There are places where the swelling is pulling my skin in very painful ways. I hate how I look. I hate how I feel. I hate that my pannus – that part of me that had been cut away – has fallen again due to the swelling. There is pressure on my surgical scars. I can’t walk more than a few steps before the pain becomes intolerable. Although I’ve always gotten dirty looks from people when I’m in my wheelchair (the looks are meant to communicate “If you got up and walked around, fatty, you probably wouldn’t need that chair”), it has definitely become more pronounced since the anascara.
It has not been unnoticed that the one part of me I had come to some radical acceptance with is now the one brought to the forefront of my attention. Is there a size or weight where being fat is less acceptable? You hear things like that from people all the time – “I’m okay with being 240, but if I cross into 300 I’d shoot myself.” Or “I’m okay with being overweight, but I’d never want to be ‘morbidly obese’.” I know that you can’t let what others say interfere with your self-esteem, but it’s also true that these ‘throw away’ comments have to stick somewhere.
Because the universe is a big cosmic joke, I’m supposed to be getting ready to teach at a sacred sexuality event next weekend. I am teaching some things that I am pretty uniquely qualified to teach, but the idea of being at an event about sex and sexuality feels pretty horrible while I’m trapped under all this fluid. As Rave often says, “I’ll just put on my educator hat and get the job done”. But underneath that hat, I am pretty depressed.
Part of what I’m asking for help with is if you’re going to THE Beltane next weekend, or know someone who is. I am sure there will be people who will be asking about my apparent weight gain, both to my face and behind my back. I know some people will be curious out of a legitimate desire to know what’s going on with me, too. But I’m just not in a place where I feel like retelling the story over and over again. Nor do I want people trying to make me feel better by throwing an arm around me and telling me I’m still attractive or whatever. I just want to teach awesome classes, have fun with my friends and play partners, and spend 4 days not making phone calls and emails to my various doctors or looking for rides to appointments. If you can do anything to help create this safe zone for me, I would be deeply appreciated.
(In particular, the owner of the location tends to comment about my weight whenever he sees me, and I am literally dreading what he will say when I get there. If you are genuinely close with said person and can explain things to him, that would help too.)
So where I stand with the mystery hunt is that cardiologist has cleared me, and infectious disease did find an infection, but that’s not the cause of the issue. Next is either endocrinology or nephrology, once I get through a sleep study (because there’s a infintessimal chance that this could all be because my CPAP needs to be reset. It would be wonderful if it turns out to be that easy, but I’m not placing any bets.)
So there’s the update. I am looking for help with two things:
1. A comfortable recliner. It seems that sleeping in a chair is working better for me right now, but the recliner we have is very, very low to the ground and getting out of it hurts my knees a lot. I don’t care if the material has holes or scratches in it, just that it is tall enough for me to get out of easily, and that the reclining mechanism works well. Rave has the exact measurement for how tall the chair should be, so if you are local and want to help us hunt on Craigslist and Yard Sales you can email her at delandrave at gmail dot com.
2. Volunteer Drivers. I’ve been going to many more appointments lately, so my regular pool of drivers are getting a little burned out. I have my own car, which I prefer because I am comfortable in it, but I will ride in other cars as long as they are high enough off the ground. I particularly need drivers the times it is most difficult to find them – between 11a and 6p, Monday through Friday. I have appointments in Hagerstown, Baltimore, Lutherville, and Frederick. The actual appointments are usually an hour long, plus travel time. It is vitally important that we arrive on time, and I would rather be 5 hours early than 5 minutes late. (Not literally.)
Drivers must also be able to lift, pack, and push my wheelchair. You are welcome to do a dry run on a day when I don’t have to be somewhere – you can come over and push me around the mall or a store or something to get the hang of it.
I can’t pay right now – money has been a real issue lately – but I can offer a variety of barter. I can send a “Rave for a Day”, who is happy to do laundry, clean and organize areas, babysit, mend torn clothing, etc. She’s pretty spectacular and multi-talented.
Again, if you might be able to help with driving, email delandrave at gmail dot com.
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.