Smart Podcast, Trashy Books Podcast

173. Managing Chronic Pain with Books – An Interview With Elyse

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.

Read the transcript

↓ Press Play

This podcast player may not work on Chrome and a different browser is suggested. More ways to listen →

Here are the books we discuss in this podcast:

If you like the podcast, you can subscribe to our feed, or find us at Apple Podcasts, Spotify, or wherever you listen to your favorite shows!

Thanks to our sponsors:

More ways to sponsor:

Sponsor us through Patreon! (What is Patreon?)

What did you think of today's episode? Got ideas? Suggestions? You can talk to us on the blog entries for the podcast or talk to us on Facebook if that's where you hang out online. You can email us at [email protected] or you can call and leave us a message at our Google voice number: 201-371-3272. Please don't forget to give us a name and where you're calling from so we can work your message into an upcoming podcast.

Thanks for listening!

This Episode's Music

Book Adeste Fiddles 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.

You can find their music on iTunes, Amazon, or wherever music is sold.


Podcast Sponsor

Clockwork Samurai

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.

As a physician, Jin Soling can see that the Emperor is cracking, relying on Opium to drown his troubles. The Qing Empire is failing, and war with the British is imminent, but the man to whom Soling was once engaged has a bold idea to save it.

A leader within the Ministry of Engineering, Chang-wei suggests an alliance with Japan, whose scientists claim to have technical advancements that could turn the tide of the war. But Japan has kept itself in isolation for the last two hundred years, cutting all diplomatic ties with the Ch’ing Empire. Chang-wei must enter the island nation in disguise to seek an alliance–an alliance forbidden by the Japanese shogunate.

Seeking to escape the politics of the imperial court, Soling arranges her own passage on the airship to Japan. But once they land, Chang-wei and Soling become targets of the shogunate’s armored assassins. Caught between two empires, in a land distrustful of foreigners, the deadly war machines are the least of their worries…

Download it today!

Transcript

Click to view the transcript

This podcast transcript was handcrafted with meticulous skill by Garlic Knitter. Many thanks.

Transcript Sponsor

The Wrath and the Dawn

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?

Remember to subscribe to our podcast feed, find us on Apple Podcasts or wherever you listen to your favorite shows.
Smart Podcast, Trashy Books is part of the Frolic Podcast Network. Find many more outstanding podcasts at Frolic.media/podcasts!
Categorized:

Uncategorized

Add Your Comment →

  1. Crystal says:

    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.

  2. kitkat9000 says:

    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.

  3. kitkat9000 says:

    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.

  4. Milly says:

    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.

  5. Nettle says:

    I love everything about this podcast. Reading it was a wonderful way to spend some time this Christmas.

  6. Coco says:

    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.

  7. LML says:

    On a lighter note, the cover of the transcript sponsor’s book is beautiful. I continue to appreciate the transcripts.

  8. Elyse says:

    @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

  9. Susan says:

    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. 🙂

  10. Helena says:

    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!

  11. LML says:

    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.

  12. kitkat9000 says:

    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.

  13. LauraL says:

    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 ….

  14. 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.

  15. Tiffany says:

    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?

  16. Susan says:

    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.

  17. Kazen says:

    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!

  18. kisah says:

    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.

  19. KW says:

    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.)

  20. lauredhel says:

    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.

  21. Hashi Girl says:

    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.)

  22. Bee says:

    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! 😉

  23. Coco says:

    @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.

  24. Coco says:

    @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.

  25. Elyse says:

    @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.

  26. Jazzlet says:

    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.

  27. Coco says:

    @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!?

  28. Susan says:

    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.

  29. Helena says:

    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).

  30. Susan says:

    @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.

  31. Jazzlet says:

    @ Coco thank you, you made me laugh out loud for real. Then made my husband snort when I read that list out.

  32. DianeN says:

    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!

  33. Helena says:

    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! 🙂

  34. Carole says:

    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…

  35. Emily Z says:

    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.

  36. Sapphire says:

    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…

Add Your Comment

Required fields are marked *

You may use these HTML tags and attributes:
<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

*


This site uses Akismet to reduce spam. Learn how your comment data is processed.

↑ Back to Top