This week, Sarah and Elyse discuss chronic pain, conditions that cause it, and self-care through reading. This is a very frank candid discussion of chronic pain, weird things our bodies do, and stuff that affects women. If you get grossed out by discussions like that, you might want to skip this one – though I promise, a lot of it is very funny. If you’re looking for a break from the family togetherness this weekend, well, consider this our holiday gift to you. We talk about fibromyalgia, chronic fatigue, pain fatigue, and using reading to combat and comfort yourself when you hurt.
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Our music is provided by Sassy Outwater. This podcast features “Three Ships” by a UK duo called Deviations Project, which features producer Dave Williams and violinist Oliver Lewis – they have their own Wikipedia page. This song is from their Christmas album Adeste Fiddles.
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Transcript
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[music]
Sarah Wendell: Hello, and welcome to episode number 173 of the DBSA podcast. I’m Sarah Wendell from Smart Bitches, Trashy Books. With me today is Elyse, also from Smart Bitches, Trashy Books. We’re going to talk about managing chronic pain, different kinds of chronic pain, and how books help her when she is feeling pretty miserable. I want to warn you that, much like last week, this is a Not Safe For Work conversation; however, today, this is dropping on Christmas, so I’m going to guess that you’re off? Maybe you need a break from the family? Go get your headphones and hide for the next hour, because it’s a little gross at times, but it’s also very funny and very frank. So I just want to warn you, if you get a little grossed out by frank discussions about biological problems, you might want to skip this one? But one of the things that we talk a lot about is how women’s opinions and feelings and their self-diagnoses when there is a problem are often brushed aside, so we talk very frankly about a lot of problems, and maybe those problems affect you too.
This podcast is brought to you by InterMix, publisher of The Clockwork Samurai, the steamy new Gunpowder Chronicle novel by national bestselling author Jeannie Lin.
The podcast transcript is sponsored by Renee Ahdieh, author of The Wrath & the Dawn, published by G. P. Putnam’s Sons Books for Young Readers and available in print and eBook. This sumptuous and enthralling retelling of A Thousand and One Nights will transport you to a land of golden sand and forbidden romance. She came for revenge, but will she stay for love?
The music you’re listening to was provided by Sassy Outwater. I’ll have information at the end of this podcast as to who this is, and as always, in the show notes there will be links to the books that we discuss, and I will warn you in advance, we talk about a lot of books, so maybe you got a gift card for the holidays and now you’ll know what to use it on, right? Right!
So now, on with the podcast.
[music]
Sarah: You wanted to talk about chronic pain.
Elyse: I do. Well, nobody really wants to talk about chronic pain, but I think we should.
Sarah: Yeah, I think you’re right. So what is chronic pain?
Elyse: So I suffer from a condition that, fibromyalgia, which –
Sarah: Oh, but that’s not real.
Elyse: That is not real. It’s a fictional thing.
Sarah: It’s not real at all. You made it up.
Elyse: I did make it up. That is –
Sarah: On the internet.
Elyse: It is classified as widespread pain and chronic fatigue, and it’s different for everyone who suffers from it, so I hate trying to give specifics because everyone’s body is really different. For me, fibro is, I have very distinct flareups where I will have this kind of chronic, widespread, very deep pain in my body, and one thing that people with fibro say a lot is that they feel like, it’s like a muscle pain, kind of like when you have the flu and you’re very achy? But it feels like it’s way down deep inside your body, like in your bones, right. You can’t really, it’s like when you pull a muscle and you can identify acutely where that pain is coming from, and then –
Sarah: It’s a much deeper ache, in other words.
Elyse: Right. Right. And then a lot of people with fibro, myself included, suffer from weird skin pain, so, like, I feel periodically like I have a sunburn, but I don’t, where, like, your skin is very sensitive to the touch.
Sarah: Ugh!
Elyse: Yeah, it’s a weird, it’s a very weird sensation, and so, it’s also very terrifying when you don’t know you have fibro and you’re like, why does my skin all of a sudden hurt and feel really hot? Like, what, what’s that all about? And then also, chronic fatigue, so it’s, the closest thing I can equate it to is, like, I had influenza A once where, not like the stomach flu, I mean, like the flu they vaccinate you against where you, you have, like 103 fever and you just want to die. And that, like, muscle ache and fatigue was very similar to what fibro is. So when I say chronic fatigue, I don’t mean, like, I could really go for a nap after work. I mean it’s like when you go to the grocery store and you come home and your body is telling you if you don’t take a nap right now, you’re going to be sick. Like, you’re dizzy, you’re nauseated, that level of fatigue.
Sarah: I remember the first time I got the flu, and I got the flu twice in three years, and both times it became pneumonia, so I was, I was very well acquainted with that flu. I remember very clearly that it started with aching on my left side of my body. My ankles, my knees, my hips, and my shoulder, all on the left side, were aching so badly while I was driving the car –
Elyse: Mm-hmm.
Sarah: – and then by the time I got home, and you know, the flu hits you very fast –
Elyse: Right.
Sarah: – by the time I got home I was like, what the hell is wrong with me? But I at least knew, oh, this is what it feels like when you get the flu. Well, that’s great. Better clear my schedule for the next, you know, three days – turned out to be two weeks – but at least then you know what it is. When you don’t know what it is, that –
Elyse: It’s very scary.
Sarah: – that adds to the pain.
Elyse: Right. The other thing that – so, we don’t really, I should specify, we don’t really know if I have fibro. I have been diagnosed with fibro, but my, the specialist I see suspects that I have something else going on that at some point in my life will be broken out of the fibro diagnosis. Like, it’s very similar and related but not exactly the same, and the reason he thinks that is I also have chronic nerve pain, which is not necessarily a common symptom of fibro. I have neuropathy, where I have pain that radiates from my neck down both my shoulders, down my arms, and into my hands, and that’s not a typical symptom of fibro, but what they’ve found is that some patients who have been diagnosed with fibro, they have done studies that have found that they have as many as five times more than normal of these very small nerve fibers in their body? And so they think that there are some people who have that, and there’s, there’s actually a neuropathy, there’s something going on with their nerves that might be slightly different but related to what most people experience when they have fibro, but the truth is they don’t know. It’s a condition that affects mostly women. It’s not –
Sarah: Oh, well, then it’s completely made up.
Elyse: [Laughs] It’s not diagnosable with any kind of test. Like, there’s no blood work, there’s no CT scan that they can do. They basically just rule out a lot of other factors, and he actually told me when I sat down in his office the day I was diagnosed is, I said, why has it taken so long? I mean, it had, it had been years. I said, you know, I’ve seen so many doctors, and he said, people don’t believe that this is real because it affects predominantly women, and I thought, holy shit. I mean, the fact that he actually came out and said that, just –
Sarah: Mm-hmm.
Elyse: – you know, flat out, it’s pretty amazing.
Sarah: ‘Cause it’s a girl thing, that’s why.
Elyse: Right. It is, it’s a girl thing.
Sarah: Like PMS wasn’t real, except ho-ohhh, oh, it so is. [Laughs]
Elyse: Right, exactly. So, yeah, you know, and one of the things that always blew my mind was that a lot of the doctors who told me there was nothing wrong with me were women. So, it actually took seeing a male specialist to get a diagnosis.
Sarah: You know, I would like to be surprised, but I’m not, because when I started to realize that I was having problems with fertility, when I wanted to get pregnant and I could not, the female doctors that I saw first – and I don’t think that this is just because of their gender, but I’m surprised that it was – they were just like, oh, keep trying, it’s fine.
Elyse: Yeah. There’s nothing more discouraging than being really scared about what your body is doing and feeling really unsettled and out of control and then going to someone who’s supposed to be, you know, a professional and have the answers and have them dismiss you. I’ve probably, I mean, the furthest back that I can distinctly remember having significant pain was probably 2009 – well, it’s between 2007 and 2009 – and I was not officially diagnosed until 2013.
Sarah: Good grief.
Elyse: So, and some of the thing – I mean, I had a, my primary care doctor, who I no longer see, told me that she did not believe that it was an actual diagnosis when I asked her about fibro – yeah – [laughs] – yeah, so, no, she’s not my doctor anymore.
Sarah: I can’t even, I, oh, okay. Mm-hmm.
Elyse: But one of the mis- –
Sarah: Oh, you just read about it on Wikipedia, so now you think you know. Yeah.
Elyse: Right, right. So, you know, I think one of the things that’s really, really frustrating is, is being discounted and feeling like you, you aren’t being heard as a patient, and then to add to the fun, almost all patients with fibromyalgia also suffer from either depression or anxiety or both.
Sarah: Which is not surprising, given that you have this overwhelming amount of physical discomfort that you can’t figure out and make go away.
Elyse: Right. And then, so what happens is it gets thrown into, well, you feel this way because you’re depressed, or you’re not –
Sarah: Right.
Elyse: – your coping skills are bad, or it’s all in your head, which it is.
Sarah: And you’re doing it to yourself.
Elyse: Right, right.
Sarah: And if you, if you – [laughs] – if you did this, you wouldn’t have this problem.
Elyse: So, like, from 2007 to 2013, I had a lot of depression and anti-anxiety medication thrown at me by different medical professionals that really did nothing to help the situation, and you feel like a failure from that, too. You know, I’m taking these, these drugs that I see on TV that are supposed to make me feel better, and it’s not working, and I remember the day I went on fibro medication, which actually does work for some forms of depression, but it was a very different drug, and I was like, holy shit, I feel better.
Sarah: So how do you cope? ‘Cause you wanted to talk about how you cope –
Elyse: Yeah!
Sarah: – with books as part of your strategy to manage chronic pain, because part of, part of chronic pain, I imagine – I, I don’t have it – but part of chronic pain, I, I imagine is just learning what level on what day you can tolerate.
Elyse: Yeah, it’s very much, it’s, it’s a combination of really planning ahead and also being spontaneous, ‘cause I don’t know how I’m going to feel on a day-to-day basis, so I have to be spontaneous, and when I have a, a really good day, get stuff done that maybe I can’t do on a bad day?
Sarah: And also not live in fear that you’re never going to have a good day again.
Elyse: Right. And then the other part for planning is just really knowing, you know, how, how much you can take in a given day. I think one of the things that people with chronic pain or chronic conditions have to do that, that maybe normal people don’t do is you have to be aware of, if I do X, I will have to pay for it later, right.
Sarah: Yes.
Elyse: And how much am I willing to pay? And so I’ve been reading this book by Jill Shalvis, which is really, really good. It’s called Still the One, and it’s part of her animal magnetism series, but in the book, the heroine, Darcy, has, she was in a, a terrible car accident and, and suffered very severe injuries and, I mean, it took her a year to be able to walk again, and she will always have chronic pain for the rest of her life and has to cope through that, and one of the, there’s a scene where she’s going out to dinner with the hero, and she really, really wants to wear these sexy high heels, and she’s sitting there debating, okay, if I wear these shoes tonight, I will have to pay for this later on. You know, I will hurt because of it later on. Is it worth it to me to put these shoes on? And it’s not a, I think, a, a thought process that maybe everyone has to go through, and I was really amazed at how well she captured having that kind of pain and having to think that way because of, you know, having a chronic condition like that.
Sarah: I have a friend who also has fibromyalgia and who went through a very similar long saga of non-diagnosis when she was convinced that there was something going on, and she has that same experience, whereas if she overexerts herself and does something with a friend, her friend’ll be a little sore the next day. She will be in bed, unable to move, because ordinary overexertion she pays for at a rate of ten to twenty times what she used to. And she’s, she’s a pretty athletic person, so this incredibly frustrating, and it, it affects her in a way that she has to sort of mentally school herself daily about it.
Elyse: Yeah, it’s, you know, for me, it was a multi-step process. Incidentally, I don’t know if your mic is picking this up, but we have a Dewey cat right now?
Sarah: Excellent!
Elyse: He’s over here jingling.
Sarah: Hey, Dewey, how’s it going? I, I always appreciate pet guests. Spawn is next to me, but he’s sleeping upside down on his back and probably won’t make too much noise, ‘cause it’s not food time, but I’m, I’m glad to know there are cats. It makes the podcast better.
Elyse: It does.
Sarah: [Laughs]
Elyse: So when I was finally diagnosed with fibro, one of the things that I really liked is the rheumatologist that I see is part of a pain management program. So in order to see him, and he’s a very good doctor and I wanted to see him, when you first get diagnosed, you have to go through a multi-step process which is, you are required to go into counseling or therapy. Like, if you, if you are noncompliant, you cannot be his patient. You are, and, and not indefinitely, for a period of time, you are required to see a nutritionist, and you are required to see a physical therapist. You have to do all three things, or he will not treat you. So if you wanted to go in and just get medication, it’s not going to happen.
Sarah: I know that a lot of, about, about a few pain management doctors that friends of mine see, they don’t tell you who their pain management doctor is. Like you, even the patients are very guarded about it, because finding a good pain management doctor is very difficult.
Elyse: It really is, and so I think, for me, the psychological counseling was huge, because we live in a society where, I had to wrap my brain around the fact that not being well was okay, and it was, you know, you, one of the things that drives me nuts is you go on Facebook or Pinterest, and you see, like, all of these motivational quotes like, you know, pain is just the weakness coming out of your body or some bullshit like that for, I don’t know, I’m, I’m assuming it’s, like, for athletics. Like, no, pain –
Sarah: Pain is weakness leaving the body. No.
Elyse: Right. Like, no. Pain is a sign that something is really wrong here and you need to re-evaluate what you’re doing. And you know, I think we, we live in a society that champions going to work when you’re sick.
Sarah: Oh, yes.
Elyse: Pushing yourself past your boundaries, and –
Sarah: This makes me bonkers.
Elyse: Oh, me too. You know, being, I don’t have kids, but being the kind of mom who works forty hours a week and still has everything in her house look like Pinterest, right? It’s so we –
Sarah: I’m not like that. [Laughs]
Elyse: I’m not a mom, and I’m not like that. So you have to reset your thinking to, it is totally okay to take care of myself and to have self-care days and to say, these are my limits, and I am not going to push them, because this is not good for me. So, I have kind of a love-hate relationship with my body? I tend to think about it in the third person, like –
[Laughter]
Elyse: – you know, it’s not my body, it’s, like, this other person, and sometimes she pisses me off because she can be a real asshole, but I also have to take care of her – [laughs]
Sarah: Yep.
Elyse: – and it was so, so hard for me to say, okay, I’m working from home today.
Sarah: Mm-hmm.
Elyse: Okay, I don’t feel good, and it is totally justified that I don’t go into work or that I, you know, come home and take a two-hour nap after work, and I think that’s just something that everyone kind of has to work through individually, but one of the things that really helped me get through that was reading, and when I have a bad pain day, I’m so physically limited to what I can do that even hobbies like knitting or crocheting, because I have so much hand and arm pain, I can’t do those things, but I can always read.
Sarah: Yep.
Elyse: And so that’s really become my mental sanctuary. No, I mean, it’s also escapism, too, right? You know, I’m going to think about this book, and then I don’t have to think about the fact that I didn’t go to work today –
Sarah: Mm-hmm.
Elyse: – or I wasn’t able to do this other thing that I wanted to do.
Sarah: It, one of the, one thing I know that really frustrates many readers is when someone goes, decides to, to go off about how eBooks aren’t real and, and paper books are the only real and lasting item, and there are so many people for whom paper books are too painful to hold.
Elyse: Yeah! Absolutely.
Sarah: And eBooks have been, like, a physical revelation for them. [Laughs]
Elyse: Totally.
Sarah: It’s like, you know, your little quibbles about format and what you think a real book is are really kind of tertiary or completely unimportant when it comes to someone who physically can hold a book again because the, the pain is otherwise manageable with a handheld reading device that, that weighs, you know, three or four ounces.
Elyse: Or even think about the, the people who have a hard time seeing and large print books. I used to work in a bookstore when I was in college, and this was before eReaders, and the large print books, there weren’t a lot of them, and they were just so expensive.
Sarah: Oh, my God, they’re so, so costly.
Elyse: And you can just get an eReader and blow, or a tablet and blow the, the font size up.
Sarah: Oh, I do that. I do that. I have the world’s most excellent eyesight, and I, I mean, I’ve, I’ve worn bifocals since I was two, I have incredible strabismus. I’m super, super awesome cross-eyed. I can cross my eyes in all kinds of crazy directions. I’m 20/400 in one eye and 20/something not even very good in the other. Like, I cannot see anything without my glasses. I’m not legally allowed to get behind the wheel of a car without my lenses on, or someone’s going to come get me. [Laughs] And when I can crank the size of the text on my Kindle up to what I call great-grandma size, it is so relaxing.
Elyse: It, yeah, I mean, that is huge. Or even being able to alter the font, the color, I mean, all of that, I think, is really important.
Sarah: Oh, it is. So when you have people who are like, well, that’s not a real, you know, book, I just want to hit them with my very real, three-dimensional Kindle.
Elyse: The only disadvantage I’ve found with eReaders, and this is part of the reason I prefer paperbacks, is when I am using an eReader, because I cannot physically see how much left I have in the book –
Sarah: Uh-huh.
Elyse: – I convince myself that I can just go a little bit farther, ‘cause I’m sure I’m really near the end, and then –
Sarah: And you keep going.
Elyse: – and then it’s, like, three in the morning, and I’m like, shit!
Sarah: [Laughs] And sleep also affects your pain management.
Elyse: Yeah. I mean, unsurprisingly, people with fibro do not sleep well, and that’s a huge part, having, like, good, they call it sleep hygiene –
Sarah: Mm-hmm.
Elyse: – which I always think is funny, because it makes it sound like –
Sarah: Oh, no, good sleep hygiene is very important. My, my top three things to take care of myself – and I’m someone who does not have chronic pain – are, did I eat correctly? Am I getting enough sleep? Did I drink enough water?
Elyse: And those are huge. I, that’s one of the first things they tell you, you know, when you have fibro or something else going on is, your sympathetic nervous system is jacked up, so make sure you don’t have low blood sugar –
Sarah: Yep.
Elyse: – make sure you don’t get dehydrated, and sleep as much as you really think you need to sleep, which for me, if I were to just let myself go and not have to get up, I’m probably, I’d sleep probably about ten hours a night?
Sarah: Oh, easily.
Elyse: And I absolutely need eight hours. If I don’t have eight hours, I am pretty bad the next day, and I would say the longest I’ve slept at one point, like, straight through, is about fifteen hours, and my husband has been rallying for sleeping to be some kind of Olympic sport –
Sarah: [Laughs]
Elyse: – because he’s convinced I’ll medal. He’s like, I’m not, I’m not going to tell you it’s going to be gold, but we can get you a bronze, Elyse.
Sarah: [Laughs more]
Elyse: Basically, when I don’t feel good, I turn into a cat. I sleep a lot.
Sarah: Mm-hmm.
Elyse: I, like, search out sunlight, ‘cause sunlight helps, I think.
Sarah: Yep.
Elyse: And I get really bitey, like, irrationally bitey. Like, yes, I want, I want hugs and kisses, but I might bite you too, I don’t know.
Sarah: [Laughs]
Elyse: So –
Sarah: I generally think of my immune system as a somewhat silly thing. Like, it really doesn’t make a lot of sense. It’s very goofy, but I, I also, ‘cause you were talking earlier about how we are conditioned to feel guilty for taking care of ourselves –
Elyse: Mm-hmm.
Sarah: – as women, and even in American work culture –
Elyse: Oh, absolutely.
Sarah: – like, my husband has to be vomiting up two lungs and a kidney before he thinks that it might be a good idea to maybe not work out that day, but definitely not go to work.
Elyse: I, as a boss, send people home from work all the time, and they get pissed off at me, and I’m like, you, you can work from home, if – I’m kind of like a bartender – you don’t have to go home, but you can’t stay here.
Sarah: [Laughs]
Elyse: All you are doing –
Sarah: You’re the work bartender!
Elyse: – is infecting the rest of the office, and it is pissing me off. Like, you are not going to win any awards by sticking this out. Go the fuck home.
Sarah: And yet I got a lot of negativity when I was out of work for having pneumonia. You were out for a really long time, and I was like, well –
Together: – Yeah!
Sarah: Because, you know, I couldn’t get off the couch! [Laughs]
Elyse: I think that, in American culture, at least, there, we have a huge problem with ignorance about how our bodies work.
Sarah: No!
Elyse: And just how science works in general.
Sarah: No!
Elyse: Right? I know! It is absolutely shocking. You know, I think that people don’t understand, like, basic disease transmission, which blows my mind. The number of times – I used to work in this huge office building; I think there were, like, a thousand employees at any given time, so it was big, and the number of women I would see not wash their hands after they went to the bathroom blew my mind. I mean, it was like, what about kindergarten did you not pick up on? Right?
Sarah: Oh, my God.
Elyse: You sing the alphabet song in your head and scrub.
Sarah: And I know by your shoes who you are.
Elyse: Yes.
Sarah: I used to work in an office with a lot of young people who were in their twenties, and that was a huge problem, and I was like, I am going to get sick because you idiots don’t wash your hands, so I started doing anonymous signs in the ladies’ room, and they got, they started out pretty benign, like, wouldn’t washing your hands with warm water feel really good right now? And here, here’s some free lotion. Like, I would bring in a bottle of lotion; if you thought your hands were going to get dry, here’s a nice lotion. And then I, then it didn’t work, so I escalated. You know, washing your hands helps keep all of us healthy. And then I was like, it sure is great, the way you spread urine on to the copier. Thanks for that!
Elyse: [Laughs] Not to mention fecal matter.
Sarah: Yes! [Laughs]
Elyse: I’ve enjoyed my E. coli; thank you.
Sarah: I was so pissed. I was so mad that I had to start dropping words like urine and fecal matter onto, like, these signs because people didn’t wash their freaking hands!
Elyse: Both my sister and my mom are nurses, and there’s, like, a, a meme or something that says, you know you’re a nurse when you wash your hands before you go to the bathroom.
Sarah: Oh, and then after you go to the bathroom.
Elyse: And then after you go to the –
Sarah: And then you use a paper towel to touch surfaces within thirty feet of the bathroom.
Elyse: I’m, I have to flush with my foot, even if it requires, like, some kind of crazy fucking gymnast move –
Sarah: [Laughs]
Elyse: – and then –
Sarah: You’re on the balance beam and now the vault, and the toilet is flushed!
Elyse: – and then I have to, like, touch everything with paper towel. I’m very germophobic, especially, like, in public arenas and bathrooms. The literal worst experience of my life – I’m just throwing this out there – was being in O’Hare and having to go to the bathroom really bad in between flights, and you’re trying to corral all of your luggage and your jacket, and you’re sweaty, ‘cause you had to run from one terminal to the other, and sitting down in a giant hot puddle of someone else’s pee.
Sarah: If we are the gender that sits down to pee, how do we hit the seat? Who are these people that are twelve feet tall peeing from nine feet in the air?
Elyse: I don’t get it! I literally don’t get it. I’m like –
Sarah: I mean, I live in a house with three males, and there’s still less pee on the seat in my house than in a public toilet in a women, in a ladies’ room.
So what are some books that you, that you really use or that you look for, or what are plotlines that you look for to, to, to manage chronic pain and just feeling generally crappy?
Elyse: I read a lot of historicals when I feel sick or feel crappy or need to be uplifted. I was wondering kind of why that was, and, so this is my theory: when I read contemporary romances, because you’re in the present day, you’re in the current moment, they acknowledge kind of all the crappy stuff that’s still really going on, whereas historical romances are kind of like in an idealized past where we don’t worry about the servants or the fact that your teeth are probably falling out of your head or that odds are you’re going to die in childbirth, right. It’s kind of this nice, tidy little, self-contained, fictional world.
Sarah: Yes, and, like, the, the Bridgerton world of Julia Quinn’s novels, because there are so many past heroes and heroines among the characters, no one is going to get sick and die.
Elyse: Right. Basically, it is an entire world populated by dukes that look like Chris Evans and Sebastian Stan. That’s it.
Sarah: Yep!
Elyse: Like, that’s all you need to – and very pretty dresses.
Sarah: Great teeth.
Elyse: Great teeth.
Sarah: No morning breath.
Elyse: Right. I was talking to my husband the other day. I’m like, you know what I just realized? No one in romance novels gets up to pee after sex. Right?
Sarah: Which I don’t understand, because the PCU, the post-coital urination, is very important.
Elyse: It’s, it is, it’s incredibly important, and, and also, you know, almost to the point where it’s, like, part of the ritual. Like, well, thanks for that. I’ve got to go pee; don’t want to get a UTI.
Sarah: [Laughs]
Elyse: But can you imagine even, like, how much more awkward it would be in a Regency, ‘cause she’d be like, ah, hang on, I’ve got to slide the chamber pot out from under the bed. Don’t want to get a UTI and die because we don’t have any sulfameth drugs yet.
Sarah: [Laughs] In a world without Cipro.
Elyse: Right. [Laughs]
Sarah: We all pee in the chamber pot when we’re done!
Elyse: So it’s like, you’re not even getting up and going to the bathroom. You know, Mr. Darcy’s just, like, lying there in bed propped up on one elbow, and you’re squatting over the chamber pot, talking while you’re peeing.
Sarah: It’s so true. And yet, that is a crucial part of a lot of people’s lives. Romance novels are magic that way. We get to skip over the slightly more –
Elyse: I like, you know –
Sarah: – unpleasant parts.
Elyse: It’s like everybody poops, except in romance novels, and the streets of London are surprisingly clear from both human and animal waste.
Sarah: Oh, of course. Like, the heroine can just go run off down the street. No problem!
Elyse: Right, there’s not, there’s – [laughs]
Sarah: There’s no poo splatter. No poo splatter at all.
Elyse: The Thames definitely doesn’t smell like a sewer.
Sarah: [Laughs] I might have to call this episode poop in romance.
Elyse: [Laughs] Please do!
Sarah: It’s going to be the most – now, listen, y’all, this is not safe for work because of grossness! [Laughs]
Elyse: So tying back into fibro, one –
Sarah: Oh, God! [Laughs]
Elyse: – one thing – no! So, when, when I’m, so I’m sitting in my rheumatologist’s office, this is the day I was diagnosed, and I’m literally, I’m in tears, I’m crying, which is very common, because, not because I’ve been diagnosed, because I have been diagnosed. Like, this is such a, a huge thing that I have a name for this, and it’s real, and so I’m sitting here –
Sarah: And I’m not, I’m not out of my mind, and no one’s going to look down at me and talk to me like there’s something wrong with me and it’s all in my head, and, you know –
Elyse: Right.
Sarah: Yeah. It’s, it’s real, and maybe treatable.
Elyse: Right, and so he’s, and then he’s like, these are other things that go along with having fibro, and we’re going to talk about them. And then, because we weren’t having enough fun with the chronic pain, IBS is also thrown in there, which fortunately I don’t have, but because I have fibro, I like to pretend I do to get out of, like, awkward social situations. Like, I really, really, really wanted to go to your wedding reception, but my irritable bowel syndrome was acting up, so, sorry.
Sarah: No one argues with IBS.
Elyse: No one. They just look horrified.
Sarah: Did you know that there’s a romance novel where the heroine has Crohn’s?
Elyse: No!
Sarah: I love this book. I can’t believe I haven’t told you about this book! Okay, Toni Blake has the, the Destiny series, and the Destiny series all takes place in Destiny, Ohio. The first one is One Reckless Summer, which is, which is pretty good; I like that one a lot. But then Whisper Falls, the heroine moves back home because she has terrible, terrible Crohn’s, and when she has a flareup, she can’t take care of herself.
Elyse: And Crohn’s is…some serious shit; sorry, I couldn’t –
[Laughter]
Sarah: Boooooooo!
Elyse: No, I mean, I, I have known people who’ve had Crohn’s, or I do know people. I mean, that’s, that’s bad! I mean, you’re talking potentially removal of part of your colon.
Sarah: Oh, yeah.
Elyse: Yeah, they don’t mess around.
Sarah: And she moves back home because she has these episodes where she can’t take care of herself, and so she moves home to be closer to her parents, and she’s lost a lot of weight, she’s not very healthy, she’s physically still dealing with this physical condition that is going to just reduce her to the couch if she doesn’t, like, if she doesn’t take proper care of herself, and even then sometimes. It’s like, yay! Flare. But she falls for the, her new next-door neighbor who is a biker, and he, I think he fixes them at his garage, so he’s got motor cycles coming and going all the time, and she gets really annoyed about it. There’s a point where he comes over to help take care of her, and it’s the most intimate and touching scene, because he’s, he’s like, wow, this is really awful. Okay, how can I help you?
Elyse: That’s really amazing.
Sarah: I, I mean, and, and seriously, Crohn’s? Not a very sexy disease. It’s not like, it’s, it’s not like, you know, consumption, where you can sing a few arias and, and still –
Elyse: Right.
Sarah: – be beautiful before you die tragically during a, you know, big swell of violin music. No, Crohn’s is awful.
Elyse: Yeah. One of the –
Sarah: You should read that one.
Elyse: I will definitely read that one. The other thing fibro patients have that I do have, which is just so much fun, is urinary issues where you feel like you have a urinary tract infection, but you don’t? Which is really fun for distinguishing when you do have a urinary tract infection from phantom weird urinary pain? So I was recently, this is, we’re going to, just going to talk about pee. So –
Sarah: We’ve already talked about everything else!
Elyse: Right. I’ve, I’ve had kind of these symptoms, I thought it was my fibro, and I woke up at, like, three in the morning, I’m like, man, I don’t feel good, and realized, no, this is real. I’m peeing blood, and I need to go to the doctor. So I call my doctor, and of course when you’re peeing blood they’re like, eh, no, you’ve got to go to the emergency room. And I’m like, no, really, I know what this is. My body is screwed up. Like, I can just come in and get some antibiotics, right. No, you’ve got to go to the emergency room. So my husband takes me to the emergency room, and I’m lying there and feeling generally kind of miserable and, you know, just had to pee into a cup and hand it to a nurse, which is always really dignified, and the doctor walks in, and it turns out to be some guy my husband went to high school with –
Sarah: Oh, God!
Elyse: – and so he’s like, oh, hey, I see – Richard! Hey, how are you?
Sarah: [Laughs]
Elyse: And he looks at me, and he’s like, he’s like, yeah, so, I don’t know, I’ll just give you some Cipro. You want some Percocets too? I’ll get you some Percocets. I’m like, I, okay, yeah. So I was kind of just lying there tripping balls while my husband and his buddy from high school –
Sarah: Caught up?
Elyse: – got caught up, yeah.
Sarah: [Laughs] Be careful with the Percocet, because Percocet tends to bind you up and makes you amazingly constipated? Like, I, I am –
Elyse: Yes.
Sarah: – I am allergic to nonsteroidal anti-inflammatories, so I can’t take Advil, Motrin, Aleve, nothing like that. I can take Tylenol, and I can take Percocet. So there’s, like, a whole range of pain management that I do, like, okay, Tylenol and red wine will manage these cramps –
Elyse: Right, right.
Sarah: – but, but these cramps, I’m just going to go for the Percocet. But, like, Percocet comes with it, a whole regimen of self-care to ensure that you don’t injure yourself when it is time for your body to do what it naturally does with waste –
Elyse: Yeah.
Sarah: – because it is so incredibly binding, and I hear these stories of people who are addicted to Percocet taking, like, hundreds of them a day, and I’m like, do you poop? Ever? Ever ever? How do you do that?
Elyse: Oh, oh, I don’t, I don’t think so, because I had to take it after I had surgery last year, and I remember at one point telling my husband, like, I’m going to go to the bathroom. Whatever you hear –
Sarah: [Laughs]
Elyse: – don’t come in here. Right? Like, I’m, I was negotiating with God at that point. What –
[Laughter]
Sarah: My –
Elyse: – what I’d do to be able to go to the bathroom, and then –
Sarah: [Laughs]
Elyse: I had a friend who had a hysterectomy right after giving birth. It was one of those where they had, they had found, like, pre-cancerous cells, and it was like, okay, we’re going to wait ‘til, you know, you give birth, and then everything’s coming right out.
Sarah: Yep.
Elyse: And so, they had gone in vaginally –
Sarah: It’s like a, it’s like a clearance sale at a store that’s closing.
Elyse: Right. So they had gone in vaginally, and she said when they sent her home with the Percocet, they told her, be very careful you don’t get constipated, because you can strain so hard you tear your stitches, and things will fall out of your vagina.
Sarah: Oh, my God! [Laughing] Oh, God! That’s horrifying.
Elyse: That is horrifying. This is the worst podcast ever.
Sarah: I know! I’m like, I’m –
Elyse: [Laughing] I apologize to everyone!
Sarah: I feel like when I, when I post this, I need to post two. Like, we’ll post this one, and it’ll be all about terribly disgusting things and pain management with romance novels, and then I’ll do another one and it’ll be like, and this one is about flowers.
Elyse: Right.
Sarah: Flowers and fluffy clouds and, and some pretty smells. I –
Elyse: Like, do we need to start over? [Laughs]
Sarah: I can tell you, though, because I am a regular user – not regular. I have a, I have a prescription of Percocet that I get from my doctor at my annual exam. I get my EpiPen, I get my Percocet, and I get my blood pressure, I get an EEG, and then it’s, you know, out for the year, ‘cause I’ve got my annual exam – and I hide the Percocet in different places, and I, and, and one prescription of maybe twenty-four tablets will last me two years, ‘cause I hardly ever take ‘em, because the, the side effects are so unpleasant –
Elyse: Mm-hmm.
Sarah: – but I know that the minute I get one, I have to get the MiraLAX. Now, MiraLAX is the most wonderful thing ever, because a lot of laxatives will use oil to make things easier.
Elyse: Okay.
Sarah: For your, for your legislation to pass, it will use an oil. MiraLAX draws water to the bowel so that it is a much more controllable, less disgusting, and more pleasant passage of legislation. I really like congressional metaphors for this, actually, now that I think about it. [Laughs]
Elyse: Yes!
Sarah: So I have, I have the Percocet and the MiraLAX in the same place, because, you know, you got one, you’ve got to take the other. So I have kind of a formal relationship with my dad. Like, we don’t talk about things ever that are –
Elyse: Mm-hmm.
Sarah: – you know, I’m, no. So he had a prescription for Percocet, and I was like, okay, I’m about to send you an email that will embarrass us both, and we do not need to mention this ever again. But you are on Percocet, and I imagine you’re taking more than one a day, possibly two, up to four. This is the thing you will get. Here is a link for you to order it. This will arrive in your home in twenty-four hours. You will take this every day, twice a day, or you will be in deep, deep agony. And, like, two days later, I got a two-word email: Thank you. [Laughs] And that was it.
Elyse: That’s phenomenal.
Sarah: Because seriously, MiraLAX is about the only thing that will help me manage the horrible, horrible side effects. Percocet is some serious business!
Elyse: It is, and I’m going to – feel free to edit this out – as my beloved sister would say, it’s like trying to shit out an upside-down Christmas tree.
[Laughter]
Sarah: Oh, God! Oh, jeeze!
Elyse: [Extra-Wisconsin] Oh, yeah. So –
Sarah: Oh, yeah.
Elyse: So, so back to fibro and reading –
Sarah: Well, that was something.
Elyse: That was phenomenal. [Laughs] So, yeah, Jill Shalvis is actually one of my comfort reads, too. I really like her Lucky Harbor series, and then she’s got an Animal Magnetism series, although I will say this, not to Jill Shalvis, ‘cause it’s not her fault, but the nice people at whoever her publishing house is: make the dog on the cover of the book match the breed of dog on the inside of the book.
Sarah: Why would you do that?
Elyse: They, on, on Still the One, the dog in the book is a German shepherd, and the dog on the cover is an Australian shepherd. Like, at least get Axis or Allies right.
Sarah: [Laughs]
Elyse: Right? Like – it’s so annoying, ‘cause I keep reading it, and I’m like, where’s the Australian shepherd? What happened to him?
Sarah: [Laughs] Well, at least, at least the Photoshop of the pets has gotten better. Like, I know that Harlequin has done casting calls for specific dogs for some of their Kristan Higgins books, and so they go out and look for a very specific type of dog that matches the description of the book that’s already written, which is pretty smart. Hard to do if you’re a publisher, but pretty smart. The Photoshopping of a dog that clearly was nowhere near the same place as the person in the photograph, that, I’m glad, is coming to an end.
Elyse: It was so bad at one point, I remember thinking it was like someone cut the pictures out of a Fosters & Smith catalog and just, like, super, like someone –
Sarah: Get the glue stick! [Laughs]
Elyse: – someone at the Harlequin factory was just glue-sticking them on every individual book that came down the line.
Sarah: Get the glue stick, y’all. We need some glue stick. On it! [Laughs]
Elyse: Yes. So I read a lot of historicals when I’m feeling crappy. I really like Julie Anne Long’s Pennyroyal Green series?
Sarah: That’s a wonderful comfort read series.
Elyse: Isn’t it? And the first book is so good. It, the, the first book opens with the hero about to be – is it hanged or hung?
Sarah: I, it depends on who you ask.
Elyse: Okay. Well, he’s about to be one of those two things –
Sarah: Strung up.
Elyse: Right. For something he didn’t do, and he is, at the very last minute, rescued by the heroine, except he doesn’t know who this woman is or why she’s rescuing him, and so it’s, it’s a Regency, but there’re tons of action and movement going on in the book, and I really love that. I really like Eloisa James, and I’ve talked about her a ton. Let’s see, who else do I read a lot of?
Sarah: Did you meet her and cry on her?
Elyse: I totally fangirled at RT. I cl-, she was clearly disturbed. RedHeadedGirl was with me, and she can substantiate that I scared the shit out of Eloisa James.
Sarah: [Laughs] Oh, dear.
Elyse: So – also Elizabeth Hoyt. I love her books, too, and I think we scared the shit out of her, because I had been trying to find her at RT, and I was desperate to meet her and tell her how much I loved her books, and the only time we could find her was at the awards after-party, and we had already gone to bed. So I showed up at the after-party wearing yoga pants and a T-shirt and no bra to meet –
Sarah: Classy!
Elyse: Right, and people were like, who the fuck is that? And she just totally rolled with it.
Sarah: [Laughs]
Elyse: She’s like, yo. She was fine with it. No, I really love her books, so basically, all the authors that I’ve scared in person. Lisa Kleypas. I haven’t met her to scare her yet, but I love her books. I love the Wallflowers series.
Sarah: Those are also a wonderful comfort read series. One of the things I think that is, that, that those two sets have in common, the Pennyroyal Green series and the Wallflowers series, is that there’s a lot of family, either biological family or found family, taking care of one another in that world?
Elyse: Yes.
Sarah: Same with the Bridgertons. Like, in the Pennyroyal Green series, there’s a family feud, there’re two major landed families that have a longstanding history of, you know, scoring points off each other, and then there’re relationships and friendships and sibling relationships where they all sort of take care of each other and watch out for each other and give each other a lot of shit, and with the Wallflowers, it’s the same thing. It’s a found family of four women who do the same thing.
Elyse: And the sex scene in The Devil in Winter is, for some reason, the hottest thing I’ve ever read.
Sarah: I love that book so much. I mean, I, I start writing about that book, and I pick it up to look up a word, and then, like, two hours later I’ve read, like, a, more than half of it.
Elyse: And, let’s see, I, I do have the Bridgertons in my, I’ve, I’ve got these floating shelves in my bedroom, and that’s where all of my these-will-never-be-sold-traded-or-loaned-out comfort reads are? So the Bridgertons are up there. I have Lisa Kleypas’s books. I have, oh, Mary, is it Bay-log or Ballow [rhymes with mallow] or –
Sarah: Bal-ogg [Balogh].
Elyse: Balogh.
Sarah: Rhymes with Kellogg.
Elyse: Her Survivors’ Club series is phenomenal, and it will make you cry but also feel so good, and it’s another found family. It’s about this group of people, they’ve all survived the Napoleonic war, and they’ve come home either physically or mentally scarred or both, and they’re all completely unable to function within society, and then they get together at this guy’s castle, basically, and they just take care of each other. And the books take place fur-, further out in the future, but they always come back every year and have this reunion, and they’re the only people who can truly understand what the others have gone through, because they experienced it similarly. And one of the main – they’re all men, except for one woman, Imogen, and it’s interesting because they never treat her any differently because she was a woman and she had these awful experiences. She’s just part of that group that is united in, in having this really traumatic past, and the theme of all of the books is, it’s okay to have this thing wrong with you, and being in love doesn’t necessarily make it go away, but having people love you makes it better, and no matter how damaged you are, you still deserved to be loved. And they’re just wonderful books, but they are, they definitely make me weepy.
Sarah: So, what, like, one hint, one, one hit of a magic peen doesn’t cure all of the problems?
Elyse: Exactly!
Sarah: Oh, amazing! How does that work?
Elyse: It is really interesting. In the most recent book, which I think is Only a Kiss, it’s Imogen’s story, and the hero assumes that she was raped and that was what happened to her and why she was so traumatized, and that’s not at all what happened to her, and it’s kind of a, like, my pain doesn’t have to be that thing just because I’m a woman, right.
Sarah: Mm-hmm.
Elyse: You’re making these assumptions about what happened to me that aren’t true, and actually what happened to her is, you know, just this horrible, traumatic event that I can’t even imagine, but it takes him a while to realize, oh, I’m making all these assumptions about you because of your gender, and by the way, they’re totally wrong, and I’m an asshole.
Sarah: Sorry about that.
Elyse: Sorry about that!
Sarah: [Laughs] What other books do you recommend for people who are dealing with, with chronic issues?
Elyse: Anything by Nora Roberts. I really, really love her wedding series, the Bride Quartet, was that it? That’s –
Sarah: I love the Bride Quartet. I love it. Which one is your favorite?
Elyse: I – probably the first one. I like the idea of Mac kind of finding herself through photography. There’s this moment in the very beginning of the book where she talks about her dad giving her a camera, and her grandma being kind of shitty about it ‘cause her parents were getting divorced, and all of the pictures she took were really crappy until she and her friend were playing wedding, and she got, like, the perfect shot. And she does, I think you call it competence porn?
Sarah: Yep! Competence porn.
Elyse: So well. Like, I don’t even need the hero and the sex or any of that. It’s like I just, tell me about how you became a photographer; tell me about how you do your job. I love that. And what’s her other series that I like? It’s the sisters on the island, the name of which I can’t think of.
Sarah: There’s a couple sisters series that she has. There’s the sisters who run a book shop in Monterey, there’s the three sisters series where they, there’s the, the ones where they’re in Ireland. There’re a lot of sisters in her world.
Elyse: This is the one where they’re all witches.
Sarah: Ah, that’d be the Donovans.
Elyse: That’s the one. I really like that one. But I have to say, whoever’s re-releasing her books with these absolutely beautiful covers in trade paperback –
Sarah: Oh, aren’t they gorgeous?
Elyse: Oh, my God, it’s so bad for my budget.
Sarah: They’re truly gorgeous. They’re just, and they’re beautifully produced. Like, they’re nice to touch.
Elyse: Yes. Yeah, I want to spoon it.
Sarah: [Laughs] One thing I really like about Nora’s competence porn is that you get a very real sense of not only the person’s job and their career, but why it is the thing that they do, and it reveals their character?
Elyse: Yes.
Sarah: So the thing that they do is important for personal character reasons, as well as really being interesting to read about.
Elyse: Yes. I totally agree with that.
Sarah: She writes a lot of competence porn. I, I actually have her newest one – I think it’s out next month, and I was sent an early finished copy – and my realtor used it in staging the house ‘cause it matched the rug. [Laughs]
Elyse: You know, it’d be really funny if they showed your house and, like, that was gone when you got back.
Sarah: I was actually a little worried. Like, there’s an ARC and an early Nora, and I was like, if this is here for the open house, is someone going to swipe my book?
Elyse: Right? Yeah!
Sarah: Wouldn’t surp-, if somebody knew that that book wasn’t out yet, they’d be like, oi! Oh, I bumped into the table.
Elyse: I’m not going to lie: I’d do it.
Sarah: [Laughs] You’re not invited to my open house.
Elyse: Well, no.
Sarah: [Laughs more] So what are some other things that you do to sort of, if, you can sort of sense when bad shit is on the horizon physically, right?
Elyse: Yeah, I can, and a lot of it is just making sure that I’m taking care of myself, and I, I have a TENS unit that I love, and – so a TENS unit is, it’s a device that looks like a remote control, and then there are, like, sticky pads that are attached by cords, and so you put the pads on your body where you’re having pain, and then the remote control thing, it sends an electrical impulse –
Sarah: Hmm!
Elyse: – and it doesn’t, it doesn’t hurt. It feels warm and tingly, and it’s –
Sarah: It sort of resets your nerves. Like, hey, wait, no. No. Okay.
Elyse: Right.
Sarah: Now, much better.
Elyse: And it also has, like, a, a rubber massage function where it actually does stimulate, like, your, your muscles and your tendons, so. I’m using it now. It’s really, really creepy to watch, because, like, if I put it on my arm, my hand will, my fingers will move and stuff, and I’m not doing it intentionally. It’s just how it’s, the electrical impulses are, are working, and that helps a lot. I’ve found lots of sleep, sunlight, going for walks – let’s see, what else? Definitely cuddling Dewey. Having a pet, I think, is tremendously important to coping with, whether it’s anxiety or depression or chronic pain.
Sarah: Purring is very therapeutic.
Elyse: Purring is very therapeutic, and I swear he knows when I don’t feel good, because he’s like, okay, I’m just going to come over here and purr and make biscuits on you. But those –
Sarah: [Laughs] I’m going to knead your stomach; in a few hours, I’ll have a loaf of bread.
Elyse: Right, yes. Biscuits will be made.
Sarah: [Laughs]
Elyse: Other things –
Sarah: I’m sure you can hear Spawn. He’s eating and spinning his food dish around.
Elyse: That’s awesome!
Sarah: Dingy-dingy-dingy-dingy-ding.
Elyse: We got Dewey one of those little wobbly toys that you fill with crunchy treats, and they have to knock it around to get the treats to fall out? And so we don’t fill it all the time, obviously; it’s just sitting on the floor. Every now and then he walks up to it, and he just slaps it disdainfully, like, you’re empty.
Sarah: [Laughs] I am not amuse. Whap!
Elyse: Right. So, and some of it is, you have to learn to deal with the bullshit that comes with having any kind of, I call it, like, an invisible illness, and whether it’s a mental or physical illness, people will not believe you, and they will judge you, and that’s just the shitty reality of dealing with it. I would recommend everyone apply for FML, family medical leave, so, just as an extra level of protection. So what I do is, I, I qualify, obviously, for FML, and it’s not a big deal. Your doctor fills out some paperwork, and in fact, your doctor doesn’t fill it out; one of his nurses does and then stamps a signature on it that says yes, you have this thing.
Sarah: Mm-hmm.
Elyse: And it is protected unpaid time off, but you can take it in conjunction with time off. So if I have to be sick because of fibro and I take a sick day, I also let HR know that I am taking eight hours of FML during this time, and then, theoretically, your employer cannot come back at you for that, because you are protected. And it always blows my mind, the number of people that have these chronic illnesses that don’t do that. And I think it’s, it’s really important to protect yourself from that perspective legally.
Sarah: There are, unfortunately, a number of places where if you use a benefit like that, you become targeted.
Elyse: Yes.
Sarah: And it’s harder and harder to sometimes figure out whether or not using your family medical leave will result in your being honest about what kind of care you need and what you’re doing or you being targeted for replacement because you miss too much work.
Elyse: Right. That is, and, and I completely agree with that. I mean, it’s, it’s one of those scary things that it really depends on the culture you work in and the people you work for –
Sarah: It’s true.
Elyse: – you know, whether or not they view this as, as legitimate, and I’m, I’ve always been very honest with the people I work for. This is what I have, and this is what it feels like, and I’ve taken that route rather than the not discussing it route and kind of hiding it, and that’s just a personal choice that people unfortunately have to make. I know plenty of people who don’t want to talk about it because they don’t want to be targeted for some form of retaliation.
Sarah: And, like we were talking about earlier, the sort of work at the expense of all else culture does not help people who are otherwise excellent employees and, and very responsible people who need more time for self-care.
Elyse: Right. Yeah, absolutely.
Sarah: Or they cannot function.
Elyse: Absolutely. And people say shitty things. I mean, you know, I’ve had people tell me that, oh, my sister-in-law says she has that, but that’s just ‘cause she doesn’t want to work. You know.
Sarah: Oh, God.
Elyse: And –
Sarah: Ugh!
Elyse: Yeah, I mean, and, and that’s –
Sarah: Oh!
Elyse: – or I, oh, that’s, isn’t that –
Sarah: She’s, she’s just lazy.
Elyse: She’s just lazy. Or, you know, the, the implication is, I think, that people who have these chronic things that you can’t see are somehow milking the system, and, you know, my response to that is always, I put in fifty-five to sixty hours a week at my current job. I’ve never been on any sort of benefit, not that there’s anything wrong with that, and incidentally, prescription painkillers like opioids do nothing for fibro pain, so I’m certainly not drug-seeking, because I’m not taking any of those things.
Sarah: Yep.
Elyse: I come to work and ring the bell when I am in more pain than you can probably imagine, so suck my dick.
Sarah: [Laughs] That’s, that’s one of the things that I’m, like, that I, I always, I always wonder, like, if someone is used to dealing with pain, their low-level tolerance is higher than most people’s.
Elyse: Oh, yeah, and that’s actually a problem. I have really, legitimately hurt myself or been becoming ill, and because my pain tolerance is so high, I haven’t been aware of it?
Sarah: Like, oh, well, you know, this is like a 5 for me, where on another person that would be like a 9 or a 10 and an oh, my God, shoot me with morphine now.
Elyse: So the story I always tell is my mom, my sister, and I were on vacation in Chicago. We were walking around downtown, and we’d gone to, like, Water Tower Place and stuff, and I just was not feeling good. I was having, like, some lower back pain and just didn’t feel great, and so they went back to the hotel, and I told them, you know, I just need to lie down, something’s going on here, and they went, I think, to the pool or something, and I took a hot bath and then I lay down for a while, and then I got up and I passed up a kidney stone?
Sarah: Oh, dear God!
Elyse: And I had been walking around all day shopping with a kidney stone, passed it, and then I was like, okay, I’m good, we can go to dinner, because to me, the level of pain I was in was manageable. The other one was, I had my tonsils out when I was twenty-eight, and they told me, you know, like, this is the worst surgery to have as an adult, and you’re going to be in so much pain, and you still, make sure, you’re, you’re not even going to want to swallow your saliva, but you have to drink, you have to take care of yourself, and I get out of surgery, and, like, you know, the first day you’re all drugged up and weird anyway, but by the second day I was like, meh. And by day three, I had called my doctor, and I’m like, so what can’t I eat, ‘cause I really, really want a bacon cheeseburger, and he’s like, who is this?
Sarah: [Laughs]
Elyse: But, you know, it was just, it was, you know, I didn’t feel great, but I could deal with it; it wasn’t, like, horrid. So, yeah, your pain tolerance is definitely altered. And then I’m very lucky from a self-care perspective, too, because I do have a very busy, stressful, sixty-hour-a-week job. I have a part-time househusband who’s standing here looking at me, who does all of the cooking, which is good, ‘cause I can’t cook anyway?
Sarah: [Laughs]
Elyse: And I would say ninety percent of the cleaning, and does the laundry and irons my clothes for work and basically just takes care of me. And that was a process in our marriage, too, where it was just learning to communicate how I really felt and what I really needed, and, and, you know, how we were going to cope with this.
Sarah: Because I think in a lot of ways, you’re taught to diminish the pain that you’re in. Oh, no, no, no, it’s fine.
Elyse: And one of the things I had to learn that I still struggle with is no matter how shitty you feel, you are accountable for how you treat other people and how you make them feel, because when you’re in a lot of pain, you’re hyperemotional, and everything feels a lot harder, and it’s easy to be brittle and be mean and just not be pleasant to deal with, but you still own that. It is not the other person’s fault that you feel like crap.
Sarah: And you have to be able to manage yourself without making lashing out part of your therapy.
Elyse: Yes.
Sarah: So are there any books that you have read recently that you recommend that you want to tell everyone that they should go read immediately?
Elyse: Yeah, so I just finished Jenny Lawson’s Furiously Happy, and I reviewed it for the site, and if you don’t know her, she writes, she has a blog called The Bloggess, and she is absolutely hilarious, and she’s got a couple different disorders. She’s got rheumatoid arthritis; she’s also got anxiety, depression, OCD, and these are things that really challenge her daily, and her blog is both these really poignant reflections on that, but also just the funniest shit you can imagine. And so this is her second book, and it’s, it’s similar to the blog, where some of it, she’s talking about, like, times she’s called the suicide hotline, not necessarily because she was suicidal, but because she needed to talk to a person who told her it was going to be okay and that her depression was lying to her.
Sarah: Mm-hmm.
Elyse: And then you also have these chapters where she’s talking about how she wants an emotional support pony named Pony Danza and how she’s going to bring him on the airplane with her dressed in pajamas.
Sarah: [Laughs]
Elyse: And it’s just, it’s one of those books that makes you cry, and then it makes you laugh so hard that you should not be in public.
Sarah: [Laughs] Well, your, your review was hilarious. It was very, very well done.
Elyse: Awesome.
Sarah: And I also know that a number of people purchased it based on the review.
Elyse: Whoo!
Sarah: Yay!
Elyse: The other thing, you know – I don’t know whether or not you want to include this in the podcast or not – that you have to learn when you deal with chronic pain is, oh, hey! This affects your sex life. Surprise!
Sarah: And that’s a difficult thing to talk about.
Elyse: That is something that people – and that’s where I said, some of it is really planning ahead, and some of it is being spontaneous, because if I’m not having a pain day and I feel really good, it’s like, we’re not leaving this house, right?
Sarah: Mm-hmm.
Elyse: Because I don’t know when my next non-pain day is going to be. It’s, it’s, you have to learn how to, first of all, communicate that, but then also be okay with the fact that, that your sex life is going to change.
Sarah: Yep, and it’s going to be unpredictable.
Elyse: Absolutely.
Sarah: Which can be very frustrating for people who like to, you know, have a regular –
Elyse: Have sex.
Sarah: – schedule and also have sex when they are interested in doing so.
Elyse: There are, there are actually books out there on how to have sex with fibro or with chronic pain, because there are accommodations that, that you can make, but part of it is just you don’t feel good, and you don’t want to –
Together: Right.
Sarah: Right. But what kind of accommodations? I mean, we’ve already talked about everything else.
Elyse: Well, I think –
Sarah: What kind of accommodations can you metaphorically describe?
Elyse: So, so –
Sarah: I’m kidding, by the way, if you don’t want to talk about it. [Laughs]
Elyse: Oh, no, we can talk about it. So, I mean, there’s accommodations like, depending on the type of pain that you have or where it is located, I mean, even just positioning?
Sarah: Mm-hmm?
Elyse: You know, you, your, definitely sexual gymnastics are, are gone, which is cool, ‘cause I’ve reached, we’ve reached the age, too, where we’re both like, if we could both be on the bottom and somehow figure that out, we would totally do it.
[Laughter]
Elyse: So, so some of it is just positioning, but some of it is, you know, there are ways to be sexually intimate that don’t necessarily involve intercourse, right? And some of that is just –
Sarah: Nope.
Elyse: – if you’re not comfortable using that language or having those discussions within the context of your relationship – and as the Bitchery knows, I am a chronic over-sharer –
Sarah: No!
Elyse: – a shrinking, a shrinking violet, as Carrie would say –
Sarah: No, no, no, I never would have guessed.
Elyse: I’m looking at my bookshelf. Oh, I have to tell you guys about this book.
Sarah: Yes, please!
Elyse: ‘Kay. It’s super crazy, and I know that there’re going to be people listening whose ears are going to perk up and they’re going to be like, what? I need this! So, it’s very old-school-y, but I think it’s from 2013. It’s by Julianne MacLean, and it’s called Be My Prince, and so it’s the Royal Trilogy she has, so it’s set, like, in a Regency-type England, and there’s a fictitious country, I think it’s called Petersbourg. I think, I don’t know if it’s a reference to Russia; whatever. Anyway, so the crown prince is in England, and all of the eligible ladies are freaking the fuck out because rumor has it he’s there to find a wife, and they really want to get married to a prince, and the heroine – so you find out that his family got to the throne because their father was, like, a general or something, and there was a coup d’état, so the heroine is secretly the real crown princess, or should be crown princess of this country, and she’s kept it on the, the DL, and she’s got, like, a secret benefactor who’s helping sponsor her season, and she’s got to get this guy to marry her, and then I’m assuming her benefactor will do something or whatever so she can win back the throne that belongs to her family, but the problem is, she doesn’t really like the prince; she’s totally in love with the prince’s brother. So then it gets crazier, and I’m, I’m giving you guys kind of a spoiler, so SPOILER ALERT, but then the prince’s brother’s really the prince, ‘cause you find out he wanted to marry someone who loved him, not just wanted to be the princess, so –
Sarah: Good luck with that, dude.
Elyse: Right, so they switched roles top secretly, right?
Sarah: Ohhh!
Elyse: Ooohhh, yeah. It’s very crazysauce, old-school-y insanity, identity-switching, secret princess mayhem. It’s glorious.
Sarah: That sounds like a tremendous amount of fun.
Elyse: It does! Other comfort reads. Oh, I really like Ashlyn Macnamara?
Sarah: Really!
Elyse: I do! And I, I also like her anachronistic, tighty-whitey covers, because the her-, there, there’s some serious dude butt on her covers. I don’t know if you’ve seen these? Like, What a Lady Demands, he is totally wearing some skintight tighty-whiteys, and he’s got, like, a serious David Beckham ass happening.
Sarah: Right, and there’s just a tiny, tiny, tiny little hint of crack.
Elyse: And I actually saw her at RT, and she was discussing, like, there’s a team that has to sit down and discuss, like, the level of crack that is, it’s very specific and scientific, like, the amount of crack you can show and still have Amazon sell your books. So, yeah, and she also has one where the dude’s in a terrycloth towel, and she fully owned up to the fact that terrycloth was definitely not a thing in the Regency.
Sarah: Yeah, just a little.
Elyse: Just, yeah, sorry. So I, I enjoy her books as well, in terms of just kind of Regency crazy comfort reading, and I’m trying to remember the most recent one I read, and of course I’m completely blanking; I just know I liked it. It’s really not helpful at all.
Sarah: That’s okay, I, I’m pretty sure I can identify Ashlyn Macnamara butt-crack covers. That’s not going to be a problem.
Elyse: I feel like there’s more information I should be imparting to the listeners, and I’m just like, there is butt-crack on the covers, and the book made me happy.
Sarah: Sometimes that’s really all you need to know, you know?
Elyse: So –
Sarah: Sometimes you just need butt-crack and a happy book.
Elyse: Pretty much.
Sarah: [Laughs]
Elyse: I feel like butt-crack and a happy book, like, I, that’s the name of my band.
Sarah: Butt-Crack and a Happy Book? It’s a good name for a band.
Elyse: Yeah. I think so. I –
Sarah: [Laughs]
Elyse: I, and I told you guys, I just culled my, my romance novel collection, and –
Sarah: Mm-hmm.
Elyse: – and I sold some, and I was very freaked out about it. I was like, you have to promise me that they’re going to go to a good home and someone’s really going to love them!
Sarah: [Laughs] You had to thin out the collection to make room for me.
Elyse: I did. I did. It was getting really, really bad. We had, like, stacks and piles and little castles built, and Dewey was knocking shit down all the time and then looking at me like, well, you put it here.
Sarah: It’s your fault, lady. It, it is hard to let go of books that you like having around, but you need more room. Like, that’s a really hard line to draw.
Elyse: Yeah, I think so. I mean, for me it is, anyway, because I, I very much have memories of how I felt or what was going on in my life when I read a specific book.
Sarah: Oh, me too! If you have, if you have the tangential, or excuse me, the tangible col-, connection of where you were or what you were doing when you read that book, it, it not only affects what you think of the book, but it affects how you feel when you see the book on your shelf.
Elyse: Absolutely. I love Tessa Dare, and during my most recent flareup, it was one of those, I was still awake at three in the morning, and I’m like, there’s no way I am going to go into work and be anything remotely like productive, and so –
Sarah: Mm-hmm.
Elyse: – I, I emailed my boss and said, you know, I’m just not feeling good, and I kind of rewarded myself for not beating myself emotionally up over that by pulling the blanket over my head and realizing, or reading When a Scot Ties the Knot, and I read it in one sitting, and it was just absolutely glorious.
Sarah: It’s medicinally therapeutic books, right?
Elyse: Absolutely! And I, I think that’s one of the things that, you know, when I talk about self-care, you know, nutrition and rest and all those things are important, I absolutely could not give up books. I mean, they are one hundred percent vital to my mental and physical wellbeing, and I’m not sure people who aren’t readers understand that, that this is, I, I would not be okay without them.
Sarah: I, my problem is, is that reading time for me is incredibly important because it is the isolated quiet time wherein I only do one thing, and if it’s interrupted or taken away from me, I get really, really angry, and, you know, if someone is reading a book, that is not when you go talk to them.
Elyse: Absolutely.
Sarah: And so it’s not an activity where I can just sort of put my finger down and have a conversation and go back. It’s like, I’m, I’m not here right now, and I don’t want to be here right now.
Elyse: Exactly. No, I, I don’t know what it is about women reading in restaurants? When you’re, like, I, I have left and gone to this restaurant for lunch specifically so I can have alone time and read.
Sarah: Mm-hmm.
Elyse: Do not come over and talk to me.
Sarah: I don’t wish to be spoken to. My book is not an invitation to have a conversation.
Elyse: Right.
Sarah: I’m perfectly happy!
Elyse: Like, I feel like there’s a specific subset of dudes, when they see a woman reading in public, like, they get like, oh, lonely cat woman. I’m going to talk to her. Right?
Sarah: [Laughs] I was – okay, true story: couple years ago, we dropped our kids off at camp, and we were like, we’re alone in the car with just the two of us! We could do whatever we want for lunch! We’re really hungry, so let’s go to Taco Bell, ‘cause we haven’t had those new Doritos tacos, so we went to Taco Bell, and I’m having the Doritos tacos – they were okay; I liked them fine – and there was a man in the, in the Taco Bell, whole tray of delicious lunch, straight up reading Nora Roberts. I have never –
Elyse: Oh, yay!
Sarah: – I have never wanted to approach someone who was reading a book in a restaurant so badly, and I refused to allow myself to do it. Like, I was just –
Elyse: They were –
Sarah: – this is amazing. This guy is straight up into this Nora Roberts, and it wasn’t a suspense, it was one of the contemporaries, and I was like, you’re the man in your Taco Bell, reading, reading Nora Roberts, eating Doritos tacos, this is the greatest human being alive at this moment in this restaurant, second only to my husband, I love this guy! Would not let myself go talk to him, because he was reading! And that would be wrong.
Elyse: We were flying, we were flying home from Puerto Vallarta once, and it was really late at night, and we had one of those flights where I’m assuming they’re running the flight ‘cause they’re repositioning the plane, ‘cause there were, like, five of us, right?
Sarah: Mm-hmm.
Elyse: And the, the stewardess, or, I’m sorry, that’s not correct, the flight attendant –
Sarah: Flight attendant.
Elyse: – is like, just, you know, sit wherever you want and ring me if you want a snack, right?
Sarah: Yeah.
Elyse: And so I’m kind of stretching out to take a, a nap, and there’s a, an older gentleman sitting up the aisle reading a bunch of, he, like, had a stack of Harlequin Presents there.
Sarah: Awesome!
Elyse: I think, I was like, you get down with your bad Greek tycoon secret virgin secretary mistress pregnesia story, sir. I respect you.
Sarah: [Laughs]
Elyse: I, oh, that brings me – Harlequin Presents. I also Harlequin Presents when I’m feeling crappy, because they’re short, and I can mainline them, and I also really like the idea that you can be working at an ice cream shop, and a billionaire who has no time to do anything but somehow has all this free time will see you and spirit you away in his helicopter.
Sarah: Oh, billionaire tycoon CEOs in Harlequin Presents Land never have to do any actual work.
Elyse: No, absolutely not. And they have a lot of time to work out and tan, apparently.
Sarah: And they can just go on and find a boat and get it on it, and it’s fine.
Elyse: Yep, absolutely. They, their peens somehow sense virgins. It’s like a, like one of those water sticks?
Sarah: It’s a, it’s, it’s a divining rod.
Elyse: It’s a divining rod for, for starry-eyed virgins.
Sarah: That’s right.
Elyse: I have never read more books where somehow a virgin has a baby than Harlequin Presents. Like, it is remarkable.
Sarah: Oh, the, the ability of women to conceive miraculously in Harlequin Presents Lands is fascinating.
Elyse: It, it is, there’s some, some crazy shit in Harlequin Presents Land water.
Sarah: [Laughs] There really is. It’s so true!
Elyse: ‘Cause everybody gets pregnant.
Sarah: Oh, everyone is extremely fertile.
Elyse: Yes.
Sarah: Like, really, really fertile.
Elyse: So here’s a question, and this doesn’t have to be on the podcast or anything. So when you were struggling with fertility issues, was it really difficult for you to read that? Like, did you want to –
Sarah: Oh, yeah, if –
Elyse: – punch some authors?
Sarah: – if somebody had, like, oh, and then, you know, the, the, the epilogue had a baby, I, I specifically sought out books where babies weren’t happening.
Elyse: ‘Cause it always blows my mind that, it’s like, you can never get pregnant because you don’t have a uterus, but somehow she does, and you’re like, where the fuck is the baby?!
Sarah: [Laughs] It’s in her sinus cavity.
Elyse: [Laughs] Where’s it growing?
Sarah: Oh, yeah, and I, and if I read books where there were fertility problems and they were just solved by the right guy with the right orgasm, I was like, you know what? Uh-uh. Nope, nope, nope, nope, nope. Because, you know, if you’re going through actual fertility problems, there’s a whole host of things that could be wrong, and finding the right medical and chemical and medicinal balance, like, this cream and that patch and this pill, and then this cream, and then this pill, and then these shots – the shots are great – and, like, an entire Rockette line of doctors needs to be involved in getting you pregnant. It’s not just going to happen with the power of one orgasm.
[music]
Sarah: And that is all for this week. Thank you to Elyse for all of the extremely candid discussion. I hope you guys enjoyed that podcast interview and that you weren’t totally grossed out, ‘cause I would feel a little bad about that.
This podcast is brought to you by InterMix, publisher of The Clockwork Samurai, the steamy new Gunpowder Chronicles novel by national bestselling author Jeannie Lin.
The podcast transcript is sponsored by Renee Ahdieh, author of The Wrath & the Dawn, published by G. P. Putnam’s Sons Books for Young Readers, available in print and eBook. This sumptuous retelling of A Thousand and One Nights will transport you to a land of golden sand and forbidden romance. She came for revenge, but will she stay for love?
The music you’re listening to was provided by Sassy Outwater. You can find her on Twitter @SassyOutwater. This is Adeste Fiddles. This is Deviations Project. This is “Three Ships.” This is probably my favorite song on the whole album, ‘cause it’s so awesome. You can find this on iTunes, on Amazon, or wherever music is sold.
I will have links to all of the books that we discussed, along with the TENS unit that Elyse mentioned, and if you have any questions or suggestions or you want to reach out to Elyse, feel free to email me at [email protected].
But in the meantime, have a very happy holiday, and on behalf of Elyse and Jane and myself, we wish you the very best of reading. Have a great weekend.
[music]
Sarah: I’m really sad that, that we didn’t get a chance to do our Wisconsin and New Jersey advertisement for president.
Elyse: Yes! Oh, Scott Walker, you d-bag.
Sarah: Yeah. Listen, America, you, you don’t really want that, it’s a bad idea.
Elyse: So –
Sarah: Forgive me for imitating you to your face.
Elyse: No, no, that is totally fine.
[cool Christmas music]
This podcast transcript was handcrafted with meticulous skill by Garlic Knitter. Many thanks.
Transcript Sponsor
The podcast transcript this month was sponsored by Renee Ahdieh, author of The Wrath and The Dawn, published by G.P. Putnam’s Sons Books for Young Readers and available in print and e-book. This sumptuous and enthralling retelling of A Thousand and One Nights, will transport you to a land of golden sand and forbidden romance. She came for revenge. But will she stay for love?
Every dawn brings horror to a different family in a land ruled by a killer. Khalid, the eighteen-year-old Caliph of Khorasan, takes a new bride each night only to have her executed at sunrise. So it is a suspicious surprise when sixteen-year-old Shahrzad volunteers to marry Khalid. But she does so with a clever plan to stay alive and exact revenge on the Caliph for the murder of her best friend and countless other girls. Shazi’s wit and will, indeed, get her through to the dawn that no others have seen, but with a catch . . . she’s falling in love with the very boy who killed her dearest friend.
She discovers that the murderous boy-king is not all that he seems and neither are the deaths of so many girls. Shazi is determined to uncover the reason for the murders and to break the cycle once and for all.
This sumptuous and enthralling retelling of A Thousand and One Nights, will transport you to a land of golden sand and forbidden romance. She came for revenge. But will she stay for love?
It’s funny that you mention When A Scot Ties the Knot. I had pre-bought it, and was super-excited when it showed up on my Kindle, but I didn’t plan to read it right away, since I was reading something else, and also I wanted to save it. Well, the Thursday after I bought it, I came down with a mild stomach thing. Nausea, grossness, and a low-grade fever. It was enough to keep me home from work (I too have the bartender coworker)s, my kids were off to school (point of order, it was the second week of school and my son had already gotten sick, and this virus was him sharing with Mom), and I was too tired to do much of anything. I remember I just looked at it and went, “Eff it, this will totally make me feel better.” I just laid in bed and read that baby, and it was the best stomach virus ever. It was a perfect comfort read.
You know the commercial where they say “if you have 15 or more headache days a month, you may have chronic migraines?” Yeah, I’ve had months, lasting for years, where I’ve had upwards of 25. Do the math. Even now when my stress levels are at an all time low, I still have more than 15.
I have migraine-related vertigo as well. Like the headaches weren’t bad enough, let’s compound the pain with dizziness so you feel like the world is spinning faster than usual. Oh, joy.
The number of comments I’ve received about it all being “in my head” have nearly made mine explode. I generally shut them up when I ask whether they consider a 9mm to be an appropriate, albeit permanent, treatment option.
(And, no, I am not suicidal. It’s just that there are times when a migraine hits and I know it will last a day or three, and they’re always the worst for intensity. You don’t have to want to die to want the pain to end. It’s just that that’s the most expedient method available. Not the best, mind you, just the fastest.)
Seanan McGuire has written about her problems with (I believe) plantar fasciitis- her foot muscles have atrophied as a result of it. She has been verbally accosted by people who see her park in a handicap spot who believe she’s taking it away from someone else who could really use it. Christ, but I loathe people who think it’s alright to stick their noses into other people’s business.
It’s like it doesn’t count unless you are visibly, physically handicapped. I always want to yell “People do not need canes, walkers, oxygen tanks or wheelchairs to be unable to travel greater distances. So shut up and quit your bitching. You aren’t the police.” Hmm, truth told, I have on some occasions. Though not nearly often enough.
One other thing, for those of you celebrating it, Merry Christmas. For everyone else, Happy Holidays.
I hope everyone has a fun and safe New Year’s and that whatever 2015 may have held for you, may 2016 be better.
What a wonderful podcast! Elyse, thank you again for being so open – your previous article and this podcast now help people realize they aren’t alone. I too cried tears of relief when I finally got diagnosed with fibro because it gave me a language and a plan to finally live a new normal. Amazing how similar and different we all are!
I love to comfort read too – our tastes seem to be very similar. I will add that sometimes the more WTF, crazy ass books the better to totally get me out of my head. Can anyone say Shayla Black or Cherise Sinclair?
What I don’t like – very angst ridden books when I’m in a flare. Those books may be wonderful and redemptive BUT when I’m in pain and exhausted I don’t want to be sad through the process. Guess that’s why I totally gave up on lit fict.
To others who may be dealing with these issues all I can say is simply this: learn your limits, don’t apologize for taking care of yourself, but don’t let your condition define who you are. And most of all, communicate with your inner circle. If they love you they will support you. if you don’t get support you may have to let some relationship go.
I love everything about this podcast. Reading it was a wonderful way to spend some time this Christmas.
So, this turned into a novel…
My credentials:
Fibromyalgia
Endometriosis
Pelvic floor spasm
Chronic daily headache
Chronic migraine
Chronic fatigue
Insomnia
Depression
Generalized anxiety
Panic attacks
ADHD
OCD
…
And that’s just the stuff that’s not going to kill me today.
Tender. Lady. Syndrome.
I kid you not, a Rheumatologist, a real, honest to God, licensed physician, specializing in rheumatology, called my issue – Tender Lady Syndrome.
I very nearly made his jaw quite tender.
Polymyalgia rheumatica, which you can indeed be tested for (muscle biopsy), might explain your neuralgia better. Or a neck injury, or nerve damage in the neck, even a minor one well in the past, could explain the radiating down the arms nerve pain, though it being both arms makes this less likely.
I am really bad about researching my own issues, I find it very stressful, so I was unaware that the nerve pain you describe is not commonly associated with fibromyalgia. I have that all the time. The hyper sensitive skin, the pins and needles, that’s all stuff that I thought was part of the fibromyalgia. I have also described it as having a chronic feeling of having hit you are funny bone. That sparking, strange sort of sensation, but lasting for hours, even days, at a time.
The funny thing about a fibromyalgia diagnosis, is that everything that ever causes you pain can be attributed to fibromyalgia. I say funny, it’s absolutely not funny to have DVTs missed because – “Of course you’re having leg aches, you have fibromyalgia.” or actually having a severe case of the flu, but not being able to convince anyone that you’re actually sick. I jokingly say that I could walk into the emergency room with my arm off, detached from my body, dripping blood all over the place, and they would say, “Well of course it hurts, you have fibromyalgia.”
For me, this is the double edged sword of a fibromyalgia diagnosis. On the one hand people don’t believe it exists, or they think that the severity of the pain associated with it is less than you describe. On the other hand nothing else that comes up will ever be looked at on its own but always through the lens of the fibromyalgia diagnosis, because these people believe that you do indeed have fibromyalgia, and this explains everything.
On women being so dismissive of other women’s pain: I’d like to give them the benefit of the doubt, that they’re just assuming that their experience, in their own bodies, makes the pain I describe seem unlikely to be so severe, or even possible at all. But I have found it to be so consistent, across the board – neurology, pain management, gynecology, rheumatology, emergency room medicine, …, …, and even in nursing – that that explanation just doesn’t cover the prevalence of other women discounting my experience, with my body. Sadly, I think it’s more likely that they feel like they need to be harder, more logical, more black and white, so that they don’t look soft, feminine, in comparison to their male colleagues.
On the other hand, I find my male doctors to be surprisingly empathetic when it comes to my pain. My pelvic pain specialist is a man. My pain management doctor is a man. The rheumatologist that finally diagnosed my fibromyalgia is a man. I actually started to seek out men, for my health care team, because the women being dismissive of my issues was so common.
I think that men can be more empathetic, because they know that they are unlikely, or even entirely unable, to feel the pain that I’m feeling, and so they don’t discount it. I think they find the pain of women to be somewhat mysterious. That’s sad, but it seems to work in my favor.
On good days and bad days, and paying the price of each: I find that I’m going to pay the price for a good day or a bad day, so if I’m having a good day I’m going to go, go, go. Tomorrow’s probably going to suck anyway. I may as well get stuff done, or really enjoy myself on my good day. If I take it easy on my good days, hoping to make them last, I’m just throwing away a good day. Tomorrow’s probably going to suck anyway. On the other hand, I absolutely baby myself on my really bad days. Yes, tomorrow is likely to be a bad day anyway but, pushing myself will make it worse.
On constipation: Miralax, yes. All the yes. Also, seriously, get the Squatty Potty. I love my Squatty Potty. I may have an unnatural affection for my Squatty Potty. It’s almost as if the “bills” are being passed entirely by gravity. I find that, these days, I don’t have time to read on the toilet as things um…move? very quickly, but if I happen to be sitting there and reading, I am totally comfortable. I could sit on that thing all day long. It’s the second most comfortable seat in my house.
On pain tolerance and damaging yourself: Before I had my total hysterectomy, they tried to clean out my scar tissue and adhesions without removing any of my bits. This was my third surgery. While I was still in the hospital, my surgeon (pelvic pain specialist and god among men) walked into my room, turned, walked back out of my room, checked the room number and his clipboard, came back in and, with a truly puzzled look on his face, said, “Did you have surgery yesterday?”
Yep, I had had surgery the day before.
He later told me that he was actually confused because I looked so normal. Because I was up and walking around my room, without any assistance, had obviously groomed myself, was dressed in street clothes, and with no apparent pain, he actually was unsure that I had had surgery the day before. He thought maybe he had missed a day or two. He then pointed out that I had also not used my morphine button (I hadn’t even realized there was one), and had not requested any pain meds from my nurse for my entire stay.
He said, quite seriously, that he worried that my pain tolerance was too high. He stressed to me that if my pain was at a level that it was actually bothering me, I should treat it like an emergency.
He was the first doctor that’s been so explicit about that, but one of my earlier, doctors, a woman who had at first treated me like I was being a baby over my pain said, after assisting with my first surgery and seeing with her own eyes what was going on, that she didn’t know how I had been walking around with all of the adhesions and scar tissue I had built up and that my pain tolerance must be rather high.
I had thought that that first surgery was perhaps unnecessary, it seemed really rather extreme for some, normal to me, menstrual cramping. I only let them go in that first time because they thought I had cancer. I did not.
On the comfort read: I don’t think I do that. At least, I don’t do the comfort reread. I do have genres that I prefer to not read when I’m feeling really bad. Happy and light books, when I’m feeling really bad, make me crazy. I’d rather read something deep, perilous even, something that is totally distracting from my own pain. I think it’s like listening to the blues when you’re having a bad day. There’s a sort of commiseration, or even, by comparison, my pain isn’t as bad as that pain. Idk. I do know that some of the time, when it’s both a physically and mentally bad day, reading anything is likely to cause me stress. Because I can’t pay attention, I get very frustrated, there is Kindle tossing.
So… that’s me.
Thank you so much for having this podcast. It was also rather like listening to the blues. In the best way possible.
Sorry for the rambling.
On a lighter note, the cover of the transcript sponsor’s book is beautiful. I continue to appreciate the transcripts.
@Coco no need to apologize for rambling! And I know what you mean about attention span. Sometimes the best I can do is watch a Pixar movie from under a blankie
Thank you for this podcast and for dealing with the issues so frankly. It really resonated with me, and I have no doubt with many of the Bitchery, too.
Just getting a diagnosis (any diagnosis) is a huge part of the battle when you feel like crap and aren’t taken seriously. I had symptoms as far back as the 70s, and was finally diagnosed with fibromyalgia in the 90s. There wasn’t much in the way of treatment back then, and what I did get wasn’t very effective. Well, that’s partly because (as @Coco also attests) once some doctors have one diagnosis they quit looking any further. When the skin on my face began to spontaneously turn into scar tissue, they finally started doing more tests and discovered I had a whole boatload of autoimmune conditions. They’re all serious, but the one that has given me the most problems is lupus, in part because it can damage your major organs (yep). Chemotherapy is the treatment of last resort for when it gets really out of control.
My toughest time was when, in the middle of a flare, I was in a serious car accident that left me with injuries (some permanent) literally from head to toe. I spent a couple of years filled with surgeries and PT, with limited success because, as one doctor said, I have unforgiving flesh. No shit. My father was in the accident with me and was even more seriously injured–which was a further complication because I was my parents’ primary caregiver for about 18 years.
The pain and exhaustion are debilitating, and can often hit with little warning. I know it sounds crazy, but I’ve literally slept in my car overnight more times than I can count because I didn’t have the strength to get into the house after driving home. Heck, I’ve even slept on my office floor because I was afraid to get in the car in the first place. And, yep, sleeping in parking lots after crashing while shopping is a norm. (But I learned the hard way to never ever fall asleep on the train because you will be assaulted. Guaranteed.)
With just a few exceptions, I’ve rarely missed work–sometimes because I had dick bosses, but mostly because I’ve been afraid to give in to illness. That if I call in sick I’ll never want to go back. I’m fortunate to currently have a great boss who allows me a lot of flexibility. He knows that mornings are the hardest for me, so if I’m having a particularly bad time I can email him and let him know I’ll be late and when I think I can be there. He also tries to schedule meetings in the afternoons to accommodate me. And this from someone who’s a cross between Doogie Houser and the Energizer Bunny himself! I’m very grateful!
Reading is a solace in general. When experiencing a lot of physical pain or migraines I pretty much can’t read anything. But I definitely have easy or comfort reads (or rereads) when it’s more of a general malaise. Light romance, cozy mysteries, space opera, or even children’s books for the most part, with the occasional angsty read thrown in. No non-fiction, tho! And I’m currently catless, but cats make everything better. Don’t get me wrong; I love dogs but they’re more high-maintenance than cats and can be too much for someone with health problems to deal with.
Since I’m already oversharing waaaay too much, I’ll add that my nephew has Crohn’s and it IS a horrible, evil disease. He got it when he was in high school, and it was hard for him emotionally and physically. The life he had envisioned for himself was shot down in flames just when he was hoping to spread his wings. Instead, he was a virtual invalid. Plus, it was hard for him to even discuss his condition because of the taboos associated with anything relating to digestion/elimination. In just a few years, he’s had numerous emergency surgeries to remove large sections of his colon and repair other damage. Just recently, he almost bled out when a roommate ate some of his food and replaced it with something containing gluten. But he just turned 30, a milestone we weren’t sure he’d make.
I’ll quit now, but thanks for the opportunity to unburden myself to a sympathetic audience; it’s been very therapeutic. 🙂
Yes. I so identify with a lot of this. I was finally provisionally diagnosed this year with fibromyalgia, although my exact symptoms and pain locations/sensations are a bit different to yours—Fibromyalgia, the chocolate box of chronic disease: never know which symptom you’re going to get next. However, I had some sketchy autoimmune disease test results that have also put me on the “may develop more symptoms and turn out to be something else” further down the track.
Reading and writing are a huge part of my coping mechanism. There are few better ways to escape from reality for a while. I find that I can’t actually read a character with chronic pain or autoimmune disease, though, because it just hits a little close to home. And brings me out of the story and back into my own issues.
I think, until you experience chronic pain, you don’t realise how it will impact every part of your life. My life has definitely taken a very different path than I expected in terms of how it’s affected my studies, work capabilities, and relationships. I haven’t had a long-term relationship since I really became debilitatingly unwell at times, and I still struggle to think how it would work. It just seems like such a hassle and a massive burden to put on someone else! *I* think it’s effing annoying having to put up with it, and never being able to make plans in advance because I don’t know how I’m going to be one day from the next, and having to go home early from things because I have a pain attack.
And, honestly, when I’m going through particularly bad patches (which can last weeks or months), even the IDEA of first dates, and drama, and someone else’s moods and issues is *exhausting*. Fictional men often seem to be the easier choice!
Have any of you with fibromyalgia tried using magnets to relieve pain? I first learned of this nasty disease in 1995; my pets’ veterinarian had it. She used magnets to help and was thinking about whether magnets in a pet bed would help pets with chronic pain.
Talking about this post with a friend, she pointed out to me something I didn’t realize until I’d reread what I had posted- I do not have handicapped tags nor do I park there. It’s just that complete strangers have this annoying tendency to speak to me about all manner of things, including their complaints about people who “don’t look sick” parking where they shouldn’t. Never mind.
I was diagnosed with sinus headaches at the age of 13. It wasn’t until years later I realized that I’d been misdiagnosed- they were migraines all along. Primarily caused by hormones, stress and weather changes also impact me adversely.
Diagnosed as clinically depressed (age 16) and with endometriosis (also age 16), over the years I’ve also had crash-induced whiplash, anxiety, panic attacks, back injuries, IBS-D, diabetes, high blood pressure and problems with all the joints in the lower half of my body.
I have maybe a handful of occasions all year where I’m pain-free. They’re so infrequent that oddly enough I tend not to realize it at first. Unfortunately, it not only never lasts, it generally doesn’t do so for more than half a day at a time. Whatever, I’ll take it.
And still I haven’t suffered as much as others, including posters here. My doctors are also all male. Gods, but so much of this sucks.
Interesting podcast. Hang in there, ladies! One of my friends was diagnosed last year with fibromyalgia after years of being shuttled around. She started coverage under a new health plan when her husband changed jobs and her new primary care doctor immediately sent her to a rheumatologist. She is doing much better now with the right meds and diagnosis. She and I often discuss our chronic pain as I have degenerative arthritis and am being watched for rheumatoid arthritis. Luckily, I work from home. The guys who work for me are good about pointing out via IM when I start getting irritable with clients or project managers on conference calls. I don’t suffer fools all that well when I feel good and can get really testy when I feel like my fingers are going to fall off from pain or my knees ache from sitting too long.
Historical novels are my reading escape when a flare comes to call. Julia Quinn, Tessa Dare, Theresa Romain, Grace Burrowes, and others have distracted me through flares, arthritis-related injuries, and a hip-replacement. I keep a few historical titles on tap on my Kindle and my library wish list for bad days. My three dogs are also a comfort and their exercise needs get me moving when I’d rather be hiding with my Kindle under an afghan. The puppy is telling me it’s time to go outside right now ….
I’m really glad you did this episode and I hope all of the people with chronic issues that have posted here have more good days than bad ones in the coming year.
My mom has a form of muscular dystrophy, but because she looks normal people don’t believe that there is anything wrong with her and if they do, they think it is because of her weight and not anything that is medically wrong. She first started showing symptoms 21 years ago yesterday. She was sitting at Christmas mass and started to feel “off.” It wasn’t anything really specific, but she did have a bit of a cold, so she took some Motrin, which I think was new to the market at that time. Shortly after that she started experiencing some strange symptoms: double vision, mucus, and eventually having a hard time swallowing. My dad took her to doctor after doctor, but no one believed her, especially when she told them about the swallowing issue. They’d look at her and think that she was lying to them because she was a bigger woman. No way someone her size was having trouble swallowing. Weight-ist assholes. Their answer was to shuffle her from specialist to specialist, hoping she’d give up and just go away. At the same time, she just kept getting worse. She started having trouble chewing and had to force her jaw to move (she would push on her lower jaw, so it would move up and down) and her double vision had gotten so bad that she was walking with one eye closed at all times. When she first got sick on Christmas Day 1994, she probably weighed about 250 lbs, and by the time she finally got help, she looked nearly anorexic. The first person to take her seriously was my aunt–my dad’s older sister. She’s a neurosurgeon and had come to NYC for my cousin’s baptism in June of 1995. One look at my mom and she knew something was terribly wrong. She pulled my dad aside and told him that they needed to go to Long Island Jewish Hospital and to tell them that they were from out of town, which would allow them to treat her, despite not taking her insurance. A few days later, my dad dropped me off at school and took my brother to my grandmother’s house (Kindergarten had ended the night before) before driving the half hour to the hospital, where they immediately admitted her. She was put on a respirator because she couldn’t breath properly. I remember my dad coming to my grandmother’s house that night (it was a Friday and my aunt had Perfect Strangers on television) and I asked him where my mom was. He said the doctors wanted to keep her overnight. Well, overnight turned into nearly 4 months in the hospital and 3 weeks in a rehab, where she had to learn how to walk again. The reason she was there for so long was because the doctors couldn’t figure out what was wrong with her. She was literally a real-life episode of House, complete with misdiagnoses and treatments that nearly killed her. After about 2 weeks in the ICU, her doctor figured out that she has Myasthenia Gravis and was in a myasthenic crisis. MG is an autoimmune disease in which her immune system attacks the acetylcholine (a chemical that allows muscles to contract) in her body. They put her on immunosuppressants and another drug (I can’t remember what class of drug it is at this point–plus, I was only 8 in 1995, so they probably didn’t tell me back then).
I remember when my dad and my aunt (different aunt, but she too has a medical background–not as illustrious as the first aunt, though) told my brother and me what was going on and what she had. It was such a relief to know there was a name for what was wrong with my mom. I had no idea what anything meant (my brother probably understood even less, since he was only 5), but it had a name, so there was something that could be done for her.
For 13 years she was basically in remission, able to live her day to day life without an issue, but she got sick again in 2008 (with something completely different) and because the doctors had no clue what to make of her (even though they had the explanation staring at them in the face), they took her off her immunosuppressant and she went into another MG crisis. She was suddenly experiencing the same symptoms she had in 1995 (and hadn’t dealt with for a LONG time) on top of what was making her sick that time around. I was 22 this time and didn’t deal with things as well because I actually understood what was going on with her.
She’s basically been back in remission since 2009 (although she is still taking her medications, although in much lower doses than in years past). Recently she’s had other issues, ones that few people took seriously because they were “invisible” for the most part. Back in May 2014, she started having weird memory glitches–she’d wake up and not know what day it was, what she did the night before, why I wasn’t in my bedroom (I moved to California a month prior), and that my brother had a job. The first time it happened, she pulled up the guide on the television to figure out what day it was and was confused over why All My Children wasn’t on (AMC was canceled in 2012). She snapped out of it after about 5 minutes and thought nothing of it. Then, it happened again a few weeks later, but lasted about 10 minutes that time. At first she didn’t tell anyone, but then in October of last year, she had a really bad episode. She woke up early and couldn’t remember much of anything. She woke my brother and his friend, who moved in after I moved out, and when they realized something was wrong, they freaked. My brother kept his head enough to ask her some questions to see what she could remember. He started with older events (When did she graduate h.s.? How did she and my dad meet?) and going to more recent events (When did I graduate h.s. and college? When did she lose her job? What happened in Hurricane Sandy?). He noticed that the closer they got to 2014 the less she could remember. Basically, anything since early 2012 was a blank. He thought she might be depressed because 2012 was when her life went to shit. She saw her neurologist, but they didn’t find anything physically wrong, so she started going to a therapist, but that didn’t do anything. Finally, in May of this year, she got a diagnosis. She’s got a brain abnormality, which causes her to have sporadic seizures. Instead of having what most people think of as having a seizure, she goes into a trance, repeats things, and can’t remember things. When the episodes are over, she can’t remember them. They put her on an anti-seizure medication and luckily she hasn’t had an episode since late May (the meds hadn’t kicked in yet). The thing is, because she doesn’t have physical symptoms, people don’t believe there is something wrong. She was denied disability because the state doctors thought she was malingering. It wasn’t until recently (she has also been diagnosed with rheumatoid arthritis and now walks with a cane) that they approved her for it. Personally, I think that disability hinges on props. My aunt was diagnosed with emphysema and COPD in May and because she showed up with an oxygen tank when she went for her hearing, she immediately got disability. My uncle had a bad accident 10 years ago and was in a wheelchair when he had his hearing. He got disability then and there. I know people try to game the system, but this is seriously ridiculous.
I haven’t even finished the podcast (hit pause to use the blender and then I got distracted by the Great British Bake Off) but I had to throw in my two cents.
I have weird non-celiac gluten intolerence (no its not foodmaps BS, I eat most the things on that list fine) but the only way I can describe what gluten does to me is that normal me has plenty of spoons, maybe even a few extra, but gluten takes all my spoons. Its not the GI issues, which can be impressive, but I end up in pain all over my body, swollen joints, moody and emotional, extreme fatigue, and muscle weakness. My doctors agree that no its not celiac and I should probably never eat gluten again. I’ve seen one study recently that might almost explain what’s going on (linked NPR article at bottom) but I’m not sure it matters because no matter what the treatment is the same. I mostly just tell people I have celiac because I’m tired of being told I’m a faddist, or hypochondriac, or self-diagnosing. None of those people are people who knew me in the time right before eliminating gluten. They didn’t see a 21 year old walking with a cane, nearly pooping their pants regularly, shaking from exhaustion from walking across a room. They don’t see the scars from when my poor stressed gallbladder just gave up and had to be evicted. They didn’t see the malnutrition ridges in my fingernails, or my frame when I weighed 120lbs soaking wet (I’m 5′ 7″ and I don’t have a delicate frame).
I’ve also got allergies and asthma, as well as skin issues. All of these are mainly caused by my immune system being broken. Its hard to not see my immune system as the enemy, since it continually attacks my body, often while not attacking things it should attack. Leaving me with both an overactive immune system and a compromised one.
http://www.npr.org/sections/thesalt/2015/12/09/459061317/a-protein-in-the-gut-may-explain-why-some-cant-stomach-gluten?
I came back here to read more of the comments mostly because I was having a major freak out over my verbal diarrhea. I never talk about my physical problems to people, even those closest to me. The only people in my family who I even told I was sick were my mother and sister (although one brother later found out, presumably from my mother when I had to start chemotherapy treatment). My father never even knew I had lupus. I guess I felt “safe” with sympathetic strangers, so thanks for that.
But my point is how struck I am by the prevalence of autoimmune conditions in the posters’ accounts. Most of the autoimmune conditions I’m aware of disproportionately affect women. And most don’t present obvious outward indications easily visible to others (at least not in their early stages). Which means that they can be easily dismissed as exaggerated, not actually real, or simply physical manifestations of psychiatric disorders of hysterical women. Whatever the reasons for these all too frequent responses, I can only hope attitudes will change, and quickly.
Thank you Elyse and everyone in the comments for being so candid and forthcoming. I’m a newly minted medical interpreter (yea!) and recently worked with a lupus/SLE patient for the first time. Hearing your stories helps me get closer to being a competence porn heroine in my own life. ^^v Many thanks!
While I luckily don’t have chronic pain, I do have epilepsy, which is a life-altering condition that I’ve had since I was 11 (I’m close to 39, for frame of reference). When I have days where it’s more of a hindrance to me or I’m just feeling woe-is-me, I try to remember that there are others with this condition that weren’t lucky enough to find just the right medication or combo of medications that will stop most of the seizure activity, as I was; when someone’s careless strobe-effect lighting sends me to the floor in pain, though, or I have to explain to someone for the umpteenth-thousandth time that “No, I can’t have ANY alcohol – messes with meds”, I don’t feel quite as grateful as I should. I don’t have comfort reads so much as comfort genres – if I’m having a rough time of it, which unfortunately affects my memory, I don’t want something complicated and bogged down with details I’ll have to remember later.
The podcast mentions “how to”-style sex & fibro books in general. Are there any specific titles or authors you would recommend? (Newly diagnosed with fibro but have been dealing with sexual pain for over a decade and am hoping for clues. Maybe the new diagnosis can help with old ones.)
I am really loving this series of very, very frank discussions of romance, sex, illness/disability and various bodily functions, by people who know what they’re talking about! It’s excellent. I would love to hear a similar sort of podcast about breastfeeding and the many ways that can interact with all of the above. I find that sometimes people can be even more squeamish and circumlocutory about that than about excretory functions, which is a curious cultural phenomenon.
THANK YOU so much for talking about chronic illness and self care! We have to keep talking and sharing and making space for the conversations — there are legions of us yet so many don’t feel safe discussing.
I was diagnosed with Hashimoto’s Disease in 2005 and my doctor(s) didn’t even tell me that it was an auto-immune disease, I had to figure it out myself. My only advice was “take this pill, you’ll be fine.” I wasn’t. In the subsequent years, my life fell apart around my ears: exhaustion like you describe, depression, inability to walk due to pain; I thought I was going nuts. I’m alright only thanks to other patients sharing their stories and solutions on hashi-related social media boards. It is heartbreaking to hear how many women are dismissed by physicians. Although I lost several years of my life, I’m feeling so much better and understand the true meaning of ‘self-care’ and ‘boundaries’.
I’ve recently become the primary care taker for my mom while she is in treatment for breast cancer. I hadn’t read a romance novel since sneaking a few as a teen, but on the recommendation of a friend I picked up the Pennyroyal Green Series. I was hooked on this delicious form of self-care. After a stress-filled day, I can’t wait to delve into Spindle Cove or hang out with some Desperate Duchesses. I’ve devoured almost 40 novels (audiobooks included) in the past few months (yay public library!) and I think that Tessa Dare and her friends may have saved my sanity! I’m so grateful for your suggestions on the blog; I have only read 2 DNF duds so far.
I’m pretty sure this will be a life-long form of self care!
(Oh, and thank you for mentioning those Ridiculous pinterest quotes. Ugh.)
I loved this podcast. Very relatable to me – particularly the part about being weepy about finally getting your diagnoses. I have Crohns Disease and have always used reading (esp romance) as pain management/ antidepressent. I don’t know what I would have done without books.
I read Whisper Falls – it was great. the depiction of the heroine’s emotional state during a flare was super realistic. But as a Chronie I was sad the heroine didn’t have bathroom issues. I’m sure there’s all kinds of Crohn’s sufferers out there – but it seemed to me that the heroine got the most polite and romantic version of the disease. I wanted some gore! 😉
@lauredhel
As for your pelvic pain, I don’t know any books on the subject as I really try to avoid researching my own issues, but are you seeing a pelvic pain specialist?
My regular pain management doctor said it wasn’t an issue that they were really able to deal with there.
My pelvic pain is specific to my years of dealing with endometriosis and many surgeries related to it. Also, it’s related to stress. It is not directly related to my fibromyalgia.
Get a referral to a pelvic pain specialist. From there you might be referred to physical therapy.
The therapy involves normal things, stretching and relaxation, but it also involves intravaginal therapy. The therapist goes in and does pressure point therapy on the interior pelvic floor muscles. It sounds weird, but it works.
Also, stop doing kegels until you know for sure what’s going on. My pelvic pain specialist said that if any doctor or therapist told me I should be doing kegels, I should put on my pants and walk out the door.
Seriously though, the pelvic pain is a pain unto itself. See a specialist.
@Hashi Girl
My mother was diagnosed with Hashimoto’s disease as well. I was unaware that there was pain associated with it. Unfortunately, she has been diagnosed with fibromyalgia, polymyalgia rheumatica, degenerative disc disease (for which she has had five spinal surgeries), chronic fatigue, and a whole host of other diseases and disorders that are all capable of causing her pain and fatigue, as well as several that might kill her outright.
She’s a very hard patient to treat. She has good doctors treating all of her various symptoms. I would really like to get all of them into a room together, at the same time, to figure out what’s going on with her and come up with a treatment plan that will work, and not kill her.
Her neurosurgeon says there’s no reason for her pain after surgery. Her MRI’s are pristine; something else must be causing the problem. Rheumatologist says she needs to be in physical therapy, but her cardiologist says no, her heart can’t take it. Her pain specialists wants her on steroids, her endocrinologist says no, her blood sugars are out of control already.
Meanwhile, I’m at home trying to stress to my mother how oxycontin and morphine don’t (can’t) help with nerve pain and will only make you feel dizzy and drunk. She’s already fallen four times, and continues to take the narcotics that she complains are not working. So I’m on a constant repeat of, “Mom, narcotics are not going to work for your nerve pain. You need to take the neurontin, and the ibuprofen.) But since I’m not a doctor, I know nothing.
I have become her primary caretaker, she’s not easy.
There are days….
Grrr.
@Coco Oh yes, I love it when people assume narcotics will help. When I say I need to take my meds I mean a large dose of NSAID or at most a muscle relaxer.
I had a fibro enduced migraine over the holiday and wound up in the ER because I couldn’t break it. Toradol, Benedryl, Compazine and IV fluids are a God send.
Thank you all for this!
I have chronic pain as a result of adhesions on my guts. Laxido is my best friend (it works like the MiraLAX)who I see less when I am not in enough pain to need codeine, more if I do need codeine.
I would like to have better ways of dealing with the ‘you should try x it will solve all your problems’ brigade. I tend to let them spout on because I know they care and want to make it all better, but then I end up furious with them for all the assumptions they are making. What I am so stupid and my Pain Consultant is so ignorant that you think we haven’t considered all the options? And that’s without even considering the amazing number of suggestions for ‘cures’ with no basis in science. It is difficult for me to discuss the reasons whatever they are suggesting will not work without getting angry when they question what I say. Very few understand that what they see is me on the best of days putting all of my energy into being ok enough to see them, and that I will suffer for it the next day or two or three. Uff.
But books don’t ask me thse questions and let me forget the pain.
@KW
Oops! My comment, number 23, was aimed at KW.
lauredhl, I’m sure your pelvis is fine, you can go ahead with the kegels.
@Elyse
Zofran or phenergan, benadryl, and toradol is what I usually get. It works every time. If you remember, ask them to put you on oxygen while you’re in the ER. I can’t remember exactly all the science but it helps with pain.
Sunday night I was in the ER with a migraine. They decided to try something new. Zofran and fentanyl.
OMG!
It was truly excellent for about 20 minutes. Just long enough to get me discharged. It was back by the time I got home. The hangover lasted a full 24 hours. So yesterday I was hungover and I still have my migraine.
Last night I slept for 11 and a half hours.
The best thing for me, at home, is fioricet and flexeril. When that doesn’t work I go to the ER. Nothing else that I have is going to work.
And I have plenty.
@Jazzlet
Adhesions are the devil! Truly an unseen woe. And they cause all sorts of trouble.
I’m having surgery in a couple of weeks to clean mine up again.
Noni juice will cure everything that’s wrong with you.
As will aloe vera juice.
And colloidal silver.
And these terribly expensive digestive enzymes.
And this light bulb.
Or this necklace.
Or this lotion, patch, shoe insert, or headband.
Oh, and don’t forget this cleaning product that is better than all of the other cleaning products. It won’t cause the problems that you’re having, which are clearly due to the cleaning products that you are currently using.
Isn’t it handy that I’m selling it!?
@Jazzlet
Try this:
https://www.pinterest.com/pin/279575089344495915/
Re: Migraines. I used to really suffer from migraines, getting them on a weekly basis or more. None of the medications prescribed helped a jot; some, in fact, made them worse. But one day I realized I hadn’t had one in months! Turns out it was the Topamax I was taking for my lupus pain. Topamax has a lot of off-label uses, including as an anti-migraine drug. Sadly, you have to take the drug continuously for it to have any preventative effects; it doesn’t help to just take it once you already have a migraine. There are, of course, side effects which have to be considered, and it isn’t universally effective for everyone, but it was a life-saver for me. I still get migraines on occasion, but the frequency and severity are vastly decreased.
Susan: What kind of side effects have you experienced with the Topamax? My doctor has suggested I try it for my chronic headaches, since I’m not having much luck with Amitriptyline (Elavil).
@Helena: I’ve personally never experienced any negative side-effects from Topamax, and I’ve used it on and off for 15 years or so. I do have to have extra vision tests for glaucoma and (I think) color-blindness, but everything’s always been fine. If you have pre-existing liver or kidney problems, your doctor may need to monitor you to ensure you don’t worsen. I’ve also been warned of neurological problems/seizures if the dosage is either too high or too low–when you start or stop the med, you have to do so gradually so your system adjusts to the new dosages. I did have to stop taking it briefly once for this reason, but I really think that was due to an over-abundance of caution due to some other meds. Also, I’ve never been pregnant while on Topamax, but I think pregnant women have additional precautions, naturally.
I know that people react differently to drugs, and what works for one person may not work for the next, but Topamax has been a real blessing for me. I hope you can find something that works for you, whether it’s Topamax or something else.
@ Coco thank you, you made me laugh out loud for real. Then made my husband snort when I read that list out.
Thanks, Elyse and everyone, for sharing your experiences with chronic pain and other related illnesses. I also have fibromyalgia. I was actually diagnosed back in the 90s, the dark time when most medical practitioners refused to believe FMS was real. I was fortunate to have a doctor who was openminded about it. He listened to me and believed what I was saying, and he has always made me feel like we’re partners in fighting this maddening condition. And, yes, I do know how fortunate I was! His approach was to treat my chronic fatigue first, and it took us several years of trial and error before we hit on several meds and therapies that made restful sleep easier. Once I began sleeping better on a fairly regular basis I found that the pain was less intense and the flares didn’t last so long.
During those first difficult years I also found great relief in losing myself in books, but I went in a different direction than most people. I had always been a historical romance fan, but I discovered Suzanne Brockmann’s Navy SEALs books were exactly what I needed. The intricate plots and constant suspense (to say nothing of the hot military heroes!) kept my mind so busy that I was actually able to forget about my pain for hours at a time. The early JR Ward BDB series also helped, though I admit I gave up on her after the first 4 or 5. I moved on to other paranormals, and still enjoy certain of them today. I think what I needed in those early years was to lose myself in worlds that were totally different from my day to day life, which was circumscribed by exhaustion and pain and IBS and all of the other nastiness that FMS dealt me. And now that I understand and am able to deal with FMS better (it’s amazing how much retiring has helped, because I don’t have to deal with job stress anymore) I read a little bit of everything!
Susan: Thanks so much! I really need to find something that works better, but I’ve had bad experiences with previous drugs, so I always find the trial-and-error slightly terrifying! I’ve learned not to Google drugs anymore, since the only things that come up are worst case scenarios. My doctor said that some of her patients on it have experienced tingling sensations in their fingers, but that most people seem to tolerate it well. I was a bit concerned about potential cognitive effects, since I have to do quite close reading and editing for my job, and need to be able to think clearly. Which, of course, is not easy anyway when you’re having frequent headaches and fibro fog! 🙂
Finally catching up on the Podcasts after a busy holiday season and I loved this one. Thank you Elyse for sharing your journey with us. Clearly we are not alone…I have very severe allergies that affect how I live my life and I also decide how I am going to spend my day based on how I feel; not only in the morning, but on a check-in with my energy levels every couple of hours.
I had an anaphylatic reaction to anaesthetic in 2005 and have been on a person healing journey since then. Pleased to share that with healthier eating, meditation, energy healing and time, etc. I am much improved. However I still need to monitor my Chi energy levels and my greatest healing has occurred because I am gentle with myself. Yes I sometimes have to say NO to events I might want to attend, but I have such an enhanced quality of life for those things I do choose to do, and because I know this about myself, I also plan ahead and conserve my energies when I know I have an upcoming event I wish to attend.
So to increase my energy levels I meditate and do energy work, but I also read. YEA. When I need to chill and recoop my Chi, my husband is very supportive and I head off to my quiet room and get lost in a Cozy Mystery, Regency Romance, Contemporary Romance or a Paranormal.
I am always looking for books that leave me feeling good. HEAs required (even if there is a bit of struggle and work to get there) and lots of stories that generate hope, love, compassion, family support and connection,
and spiritual and magical books that show energy and emotional healing are real. These are the themes that float my boat.
Stories that have too much angst or violence or abuse and despair drain my chi. Books that in the end leave me laughing or feeling hopeful, joyful or content, these reading experiences enhance my chi, and it helps me feel better and optimistic and that is all part of my healing process.
Forgot to mention you can also channel sexual energies into the chi channels in the body to be used for physical healing, so Steamy Romannces can also be healing. RRRrrroww…
I have vestibular vulvodynia, which fortunately only acts up when I have sex or wear pants. I also have IBS, which is mostly just annoying. Oh, and migraines, (which have allowed me to boast that I’ve read myself sick). Plus shoulder, neck and wrist pain (particularly if I’m wearing a bad bra). OK, yeah, I have chronic pain.
My pelvic floor physical therapist was amazing. She helped me go from not being able to even use a tampon to enjoying vaginal sex on a regular basis. Trigger-point therapy (which is Western Medicine’s version of accupressure) has been immensely helpful in all my pain. She also had a lot of great diet suggestions and some techniques for dealing with the IBS. For example, one day I was really gassy and constipated. She had me relax face-down on a big exercise ball and slowly rock around. Then she left the room so I could fart in private.
Sex advice:
One of the best sex suggestions I’ve seen is to cuddle and make out while your partner masturbates. It’s intimate and not physically demanding, and I can do it even if I’m not feeling sexy. I also sometimes get turned on by it enough that we end up having sex anyway.
I also will go down on my partner. If being on your knees hurts, you can lie down with your head propped up on a pillow and he can thrust into your mouth. In that position, another thing I do is breast sex (basically lube up and wrap my largish breasts around his penis for him to fuck). I have to feel at least a little sexy, but it’s not physically taxing (except the shower afterwards).
For me, there are basically three positions that don’t hurt when I have vaginal sex, and they’re what’s not generally recommended for people with chronic pain: Me on top, facing forward or backwards, and doggy-style. Side-by-side (spooning or facing each other) also fails to cause pain, but doesn’t feel as good. Some people really like it when the woman lies facedown on the bed, possibly with 1 or 2 pillows under her hips. People also use pillows to support her in doggy style, and/or have her rest her head/chest on the bed. There’s also variations on “missionary” – her knees and legs up, pillow under her hips, him kneeling on the bed or standing next to a bed she’s on.
I find that orgasms help with most kinds of pain (although I know they can be very draining for some people). If you haven’t tried it yet, I recommend a clitoral vibrator during vaginal sex. Also, others with vulvodynia have done anal sex, but that’s often incompatible with my IBS.
I read your transcript and wondered if you have ever tried a chronic pain support group. It really helps me. I have had multiple spinal surgeries and still have problems.I can relate to your frustration with the medical community too. I was misdiagnosed at first too….it was torture going through physical therapy for something that wasn’t the real problem. And I am an RN!!!!I was told I am stoic. So now I am bitchy. I have to be to get my point across!! God bless all you folks…