Hello and welcome to episode 1 of season 2 of the podcast Tips and Tricks on How to be Sick.
I’m Eirenne and I will be your host as we talk about navigating the world as people with chronic illnesses, both physical and mental, disabilities, and the ways in which the world isn’t necessarily designed for us.
Before we begin, some administrative housekeeping and some thank yous are in order. Content note for the next bit: discussion of animal illness and death. Skip forward about 2 minutes if you need to avoid that.
It’s been more than a year and a half since the last episode of this podcast, with some disruption of it before that, because my assistance cat, Diana, was in hospice until she ultimately passed in August of 2019. She was with me for nearly 18 years, acting as an assistance animal for about 2/3 of that time, and for the last couple of years we had together, she’d developed a sound-triggered seizure disorder, and the sound that triggered her seizure activity was the sound of my keyboard clicking, my mouse if I clicked too fast, or the crinkle of cellophane packaging. As she was more important to me than just about any other creature on the planet, I willingly let anything that interfered with her quality of life slide, including typing up episodes and transcripts for this podcast. Once she passed, I entered a full year of mourning for her, which I’m sure seems silly to some people because she was “just” an animal — but no, she truly was more important to me than just about anyone else, and she deserved to be fully and properly mourned.
But let me back up a little bit, to the point where she entered hospice, at the beginning of 2019. I didn’t know how I was going to manage paying for the meds that kept her comfortable and engaged until she was ready to leave me, but this community stepped in and sent me donations big and small to help defray the costs of her veterinary care and I could not be more grateful for the extra time you gave me with my baby girl. I got an extra seven months with her that I would not have been able to manage without everyone who donated or boosted my updates to their own networks, so thank you all so very much.
And now, in this episode, and in honor of Dysautonomia Awareness Month, we’re going to discuss dysautonomia and the ways it can present in different people, both on its own and in conjunction with other disorders.
What is dysautonomia, anyway? Well, it’s a dysfunction of the autonomic nervous system, which tells you nothing unless you know a little bit about how the autonomic nervous system functions and what it does in the body. So let’s take this in two parts – what the autonomic nervous system does, and what things happen when it doesn’t do its job correctly.
The nervous system is broken up in two major parts – the Central Nervous System, or the CNS, and the Peripheral Nervous System, or PNS. The CNS is basically your brain and your spinal column, and the PNS is everything else. From there the peripheral nervous system is broken down into two halves, the somatic nervous system (that’s all of the stuff you have conscious control over, like muscle movements) and the autonomic nervous system (that’s all the stuff you don’t have complete conscious control over, like breathing, heart rate, sweating, digestion, arousal, etc.). The last bit here is what we’re focusing on.
You’ve probably heard of fight-or-flight, right? Where you get a jolt of adrenaline and you prepare to defend yourself or run away from a threat (whether that threat is a literal physical one or not). It increases your heart rate, makes you breathe fast, dilates your eyes, slows down digestion. The flip side to that is sometimes called rest-and-digest, where your body slows down your heart rate and breathing, narrows your pupils, and stimulates saliva production and digestion. I’m not trying to get into an exhaustive anatomy and physiology lecture today, so this is a pretty simplified overview, but I think it’s enough to make it easier to understand what can go wrong if this system is out of whack.
Dysautonomia is one of the constellation of diagnoses I have, secondary to having Ehlers-Danlos Syndrome. But it’s important to note that dysautonomia can be part of a whole lot of different conditions, not just EDS, and that ‘dysautonomia’ is the broad classification of all the varied ways the autonomic nervous system can break, so not everyone will have the same set of symptoms, depending on their own specific diagnosis. If you hear me talk about a symptom that I have, and you with your own dysautonomia don’t experience that thing, please don’t think I’m suggesting that you don’t have dysautonomia. For indeed, the human body is a vast wonderland of potential malfunctions, and we all get our own special mix of them.
In my life, my dysautonomia symptoms tend to be elevated heart rate at rest, unstable blood pressure with exertion, random low grade fevers, unpredictable GI function (sometimes things get stopped up for no reason, sometimes the opposite happens) nausea, and dizziness. So much dizziness. My favorite is when I’m lying in bed, trying to sleep, and my heart is racing like I’ve just run up several flights of stairs, and I’m so dizzy that I’ll fall off the world if I try to roll over. (This is 100% sarcasm, this is not at all my favorite anything.) Being in the heat makes everything worse, though I’m usually ok in cold temperatures. Standing up quickly is a fast way to make me black out and end up on the floor, so I don’t do that if I can help it. Standing up for too long makes me more prone to all of the above, so I try to avoid prolonged standing, even when I’m doing things that require it, such as cooking in my dinky little kitchen where my wheelchair doesn’t fit. And through all of that is the brain fog. I will have times I can’t form thoughts or I’ll lose my words halfway through expressing a thought, or I’ll completely forget something that I’ve known for years, or that I was just thinking about. I never feel as stupid as when my dysautonomia is flaring up and I can’t remember simple things that I’ve definitely known for most of my life.
I do my best to manage my symptoms with salty foods, lots of water, strategic use of caffeine, and changing position slowly. I keep bottles of Gatorade on hand, because getting dehydrated is the worst thing you can do for dysautonomia symptoms, and is usually the first thing you can try to fix on your own to correct them.
I’m not the only one in my family with dysautonomia, either. My cousin was recently diagnosed with it, though hers presents really differently from mine. She doesn’t have EDS, and as far as we know, her dysautonomia is there all on its own, not connected to another condition. She’s given me permission to talk about her case as well, so that you can hear the different things that we experience.
My cousin is a band director, which means lots of time outdoors with the marching band three seasons out of four. From band camp in the middle of summer to Friday night football games all autumn, this means she’s on her feet in triple digit heat in the summer to near or below freezing temps in the autumn. That’s not exactly fun for anyone, but when you toss in an autonomic nervous system that doesn’t quite measure up, it can get dangerously bad. In my cousin’s case, she doesn’t sweat in the heat, which means her body can’t cool itself off. This has led to multiple heat strokes every summer where she’ll get so hot she passes out, then she’ll vomit uncontrollably, pass out again, repeat, combined with an intense pain in the back of her skull where the spine connects. At this point she says she has to wear an external temperature monitor to make sure her body temp doesn’t go above 102 degrees Fahrenheit (that’s 38.89 Celsius) before she can cool down, because otherwise she’ll easily hit 104 F (that’s 40 C) which is very dangerous. She limits her outdoor activities to only days when it’s 80 F (26.67 C) or cooler, and she uses instant ice packs in the summer to help cool her body down when she has to be outside.
She’s lately been having days where she has the brain fog that so many dysautonomia patients describe: difficulty formulating thoughts, inability to find the words to express her thoughts, getting lost in familiar areas (like her neighborhood), trouble judging distance or depth when changing environments (like going outside and going down steps). She’s told me that her symptoms definitely got worse after the birth of her daughter, which is a pretty common thing in childbearing people — pregnancy puts a huge stress on the body and it can knock even initially stable body systems out of whack, so if you’ve found that you have symptoms that increased in frequency or intensity after a pregnancy, you are not imagining it.
When I asked my cousin what she wishes she could have known at the start of all this, she said that since she’s still in the beginning parts of this (she’s only in the last months gotten the dysautonomia label and she’s still getting testing done), she says to be patient. “Doctors have more patients than just me and I need to trust that they’re working in the right timeline with everyone’s best interests in mind. Also to not feel ashamed about it. Like, I can’t control what’s going on in me. I’m just along for the ride and other people need to know my limitations. Communication is important. That way I’m not being neglectful when I let my daughter play outside without me watching her every movement. (Side note, that’s how my parents did it and I had a great childhood [I think] so I don’t even care haha she can go out and play. I check on her and she understands my body doesn’t work right.)”
I’m so grateful to my cousin for letting me share a bit of her story with you all. Any comments or questions you send my way for her I will be sure to pass along.
Now, for a different set of experiences, let’s turn to the interview!
So today we’re going to be talking with Allegra and Owen; they’re a couple of my local friends with whom I share some medical adventures. One of the diagnoses we all have in common is dysautonomia. We’ve all got some different symptoms, so let’s chat with them and see how this works out in their lives; what kind of symptoms and presentation that each one of them has.
[Eirenne]
Allegra, Owen, welcome to the podcast.
[Allegra]
Thank you for having us.
[Owen]
Thank you for having us.
[Eirenne]
So let’s jump right in. What kind of symptoms do you have? Like — you can get as specific, or not, as you feel comfortable.
[Allegra]
Sure, I can go first. Well, I — my main symptom is perennially low blood pressure. My blood pressure never really gets to normal levels, even on a good day, even when I’m eating my 10,000 mg of salt a day and having my gallon of water like I’m supposed to. It still always sinks down way lower than it should. I also get the kind of stereotypical pulse racing when I stand up for too long from POTS, but I also have moments where my pulse just plummets for no apparent reason and will just be very, very low no matter what I do and no matter how active I am. On top of that I definitely get the brain fog; my IQ seems to change whether I’m lying down, sitting up, or standing. Which is always fun; I’ll forget anything anyone says to me while I’m standing up. And a few other miscellaneous symptoms which of course I can’t remember right now because I was standing and cooking dinner before this.
[Owen]
Isn’t that how it goes? Yeah, so I have similar symptoms to Allegra. My diagnosis is just dysautonomia, it’s not specifically POTS, but I do have a lot of the postural orthostatic symptoms. So, like, I can black out when I stand up or if I’ve been upright for too long. My vision will just kind of decrease, tunnel in down to a point, and when it gets really bad and I’m sort of about to fall over, colors get weird is the best way I can describe it. I also — there just sort of various other autonomic things besides my circulatory system. I can’t really absorb water very well into my bloodstream. If it’s electrolyte balanced it helps, but still drinking a lot of water doesn’t really seem to hydrate me. I have low blood volume and my hematocrit is always high, so I always show as a little dehydrated on blood work, no matter how much I drink. I can’t regulate my temperature very well, so in the winter I’m always cold and my hands and feet are like ice, but in the summer I don’t sweat, so I can get really overheated really easily and I don’t even feel it or notice. So that can be a little bit dicey and I have to keep an eye on things.
[Eirenne]
So how long ago did you first notice having your symptoms? Regardless of when you were actually diagnosed or went through some testing, how long ago did you notice the symptoms as a thing on their own, as opposed to, oh, I’m doing something and therefore I’m hot. Like, hey, this is just a thing that is happening to me.
[Allegra]
I remember being a teenager and I would just be out and about in normal summer temperatures and get heat stroke at the drop of a hat. And I remember passing out several times as a teen and not knowing why. My parents were always very, very concerned, but then I would go and get testing and nothing would come up, I’d be perfectly normal. But I think the first time I noticed something that, oh, oh this is wrong, I remember picking up my cat, sometime after puberty, I was probably 14 or 15. And I felt my heart just racing and racing and racing as I held this cat up on my shoulder, and I was convinced I was having a heart attack. I didn’t tell my parents because I didn’t want to, like — I felt like I was going to die, and I didn’t want to say it out loud. So, for years I just kind of assumed I had an underlying heart condition that would one day kill me dead, and never said a word about it because I was way too scared to confront it. And of course, it was that I was standing and holding something, and my pulse was skyrocketing and it felt real scary.
[Owen]
Sounds super stressful.
[Eirenne]
It definitely sounds scary.
[Owen]
I remember being probably 10, 11, 12, and having — I mean, I always got dizzy after standing up. Whenever I stood up my vision would black out, and whenever I would try to explain it, well, just don’t stand up so quickly! Or I — I would say I was a fairly athletic kid. I did dance, I was in dance class a couple of times a week. But even with that, if I would run up the stairs, by the time I got to the top of one story I would be, like, gasping for breath and my heart would just be pounding just from that short, sort of, burst of exertion. Even though I could dance for two hours, or do 300 crunches, you know, or do ballet barre for 40 minutes, no problem, no stamina problems. And I would bring that up and it was always kind of brushed off and no one really knew what to do with it. And I didn’t really know that I was different until I was seeking my EDS diagnosis and learning more about POTS.
[Eirenne]
So I’m guessing that since you were both teenagers, you probably hadn’t heard of dysautonomia as itself when you were first noticing these symptoms?
[Owen]
Definitely not.
[Allegra]
No, not at all.
[Eirenne]
I’m the same way. I had symptoms for a long time before I had a clue there was a name for the collection of things that were happening. I was actually just talking to my spouse today about the fact that, looking back through time and thinking back about particular symptoms that I had, I’m like, ohhh, I bet that was part of this and we just didn’t know that at the time.
[Allegra]
Oh yeah, all the time! I look back at every weird injury I got and I was like, oh look, that was a dislocation. Oh, I passed out that time, I know exactly what it was, I had just gotten a shot and there was adrenaline in my system and that makes my dysautonomia go crazy and I passed out. Everything makes sense once I had a name for it.
[Eirenne]
People talk about, why do you bother going for diagnostic stuff when it’s, you know, something they don’t have a cure for? I’m like, because knowing what it’s called makes it way less scary. If you know it’s dysautonomia that’s making your heart race, you’re much less afraid that you’re having a random heart attack at age 14!
[Allegra]
Exactly.
[Owen]
Definitely. And it also — having a diagnosis makes it easier to find community and also find strategies that help you cope. Like, treatments – medical treatments – for dysautonomia are not particularly awesome, and there are some medications but they all have some pretty significant drawbacks and they’re not right for everyone, but there are some lifestyle things, some tricks and little things that you can do to mitigate symptoms. And I know that I learned all of those things from other sick people. My doctors don’t know any of them, really.
[Eirenne]
That’s the whole reason this podcast was started. Because doctors, even nurses who are intended to do patient teaching, don’t have the experience with it. They only know what they are taught, and if they don’t have the experience, and they don’t know anyone with the experience, then they never learn all of the stuff that falls through the cracks. And that’s where we come in.
[Owen]
Exactly!
[Eirenne]
Exactly – we have to teach each other because nobody else is going to. None of us should have to go through this on our own; we shouldn’t have to reinvent the wheel every single time one of us gets diagnosed. We should be able to take the lessons that other people have learned and be able to apply them to our own lives.
[Owen]
So many of these things are not necessarily things that a doctor might feel comfortable recommending, right? Like, a lot of these are not particularly scientific or well-tested. It’s like, I tried this once and it made me feel better, so maybe you can try it, too.
[Allegra]
Or little things, like pulse how you tense your legs when you’re standing so you’re literally just pumping blood up your legs when you’re standing still. Doctors aren’t going to think of those things because they’re the coping mechanisms that we develop by living with them.
[Eirenne]
So how do you deal with it? What your big coping mechanisms for this? The sorts of things that you need to do day-to-day if you want to do your normal daily activities, assuming you can do your normal daily activities when your dysautonomia is making a nuisance of itself?
[Allegra]
Well, for me, the big thing is that I haven’t been able to. I had a successful career in the culinary industry which I had to completely abandon, not necessarily because of the Ehlers-Danlos diagnosis, but because of the dysautonomia. I was a fall risk in kitchens with sharp and pointy things, so I had to leave the culinary industry for good; I sometimes can’t even cook in my own house. It was very much an emotionally difficult decision; I’m currently fighting my disability claim. But the major lifestyle changes for me are that I have to really vary my position; I can’t be sitting up all day or standing all day or lying down all day, because each one of those makes it worse in a different and creative way. I also have to eat so much salt, which is, in my case, not a bad thing. I’m obsessed with salt, and the history of salt, and collecting salt, so it’s kind of an excuse to indulge one of my passions. But drinking my gallon plus of Gatorade or other electrolyte beverages every day is definitely challenging. And just losing my ability to do so many things I love. Travel is more difficult, going out with friends is more difficult. I’m — as it gets worse it feels like it’s an uphill battle of always trying to make these micro adjustments or major adjustments, and they work for a little while and then something else gives out and it’s back to square one and fighting that battle again.
[Eirenne]
Owen, what about you? What kind of things do you need to do to cope day-to-day?
[Owen]
Dysautonomia is definitely — it’s up there. I don’t know that I could pick out one thing that limits me most, but my mobility is fairly impaired. I’m not a great walker, I have a sort of mystery, undiagnosable spine problem, and so a lot of the time when I go out I use a manual wheelchair which does help with not passing out from POTS. I still get dizzy, but if I go limp I don’t really have anywhere to go, so that’s pretty convenient. There are definitely things — I am not a good water drinker. Allegra is a really stellar hydrater, I am not. I can’t absorb a gallon of water in a day, no matter how much salt I eat. And especially — I’m currently having digestive motility issues so my stomach — I’m having to make choices between hydration and food, so that right now I’m not drinking anything that doesn’t have calories in it.
[Eirenne]
Yikes.
[Owen]
Yeah. At least some calories, right — coffee, at least it has cream. But salt does help. There’s also certain products like oral rehydration solutions that help. I’ve used DripDrop, which definitely makes me feel better. I don’t like any of the flavors, so I wouldn’t necessarily say I recommend it from an enjoyment perspective, but I can’t really complain about the effects.
[Eirenne]
So many of the things that we do taste horrible.
[Owen]
Yeah.
[Allegra]
Truly.
[Eirenne]
I have a similar relationship with Gatorade that I drink fairly frequently to keep my own heart rate and blood pressure in relatively appropriate ranges, and there is one, only one flavor that I find tolerable. That flavor is Green Apple, by the way. It tastes more or less like Apple Pucker, if you’re an alcohol drinker, it’s basically like green apple schnapps.
[laughter]
[Eirenne]
Only it does better for you than actually drinking the alcohol.
[Owen]
The lemon and berry flavors are less offensive than the watermelon flavor. If you really, really like artificial watermelon flavor, that one might be for you, but it’s not for me.
[Allegra]
Yeah, for me it’s powdered Gatorade Zero. I go through a gallon of it a day and I hate every single flavor, but when I’m dehydrated enough, which is basically just all the time, I can hardly taste it and I only start tasting it when I’m mildly hydrated, which is usually when I stop and gag and put it away and try not to look at it for another 15 minutes until I have to drink more.
[Eirenne]
That’s basically my relationship with Gatorade. When I don’t need it, it tastes slimy. That’s the best way I can phrase it; it tastes slimy.
[Allegra]
I agree! I does taste slimy.
[Eirenne]
Exactly, it tastes slimy. But when I need it, I don’t taste that. So I drink it until it tastes slimy, and then I stop.
[Owen]
I’ve literally never been hydrated —
[Allegra]
Ever, once.
[Owen]
— I’ve never been hydrated to the point that Gatorade tasted too salty or too gross, it always tastes refreshing. Yeah, never ever.
[Eirenne]
Oh, you poor boy. Ok, so, we’ve talked about the things you do to manage it, and the things that your dysautonomia can keep you from doing. So, if you think back to when you first started having significant, life-impacting problems that you can at least now trace to dysautonomia, what sort of things would you have found helpful to know back then? If you could, you know, reach through time and tell your younger self some thing, or if someone else could have told your younger self some things about dysautonomia, or about how to handle it, what would you have found most helpful to know back then?
[Allegra]
‘Don’t go hiking up the tallest peak in the Caribbean, you idiot?’ is top on that list. The shot of straight adrenaline that it took to get me down off that mountain was exciting and I never want to repeat it, but apart from that one traumatic experience that was absolutely caused by the dysautonomia, I would probably say don’t let your mother tell you to reduce your sodium intake and let your body guide you. Because I was doing the right things back then; I was heaping salt on everything I ate, I was drinking a ton of Gatorade. I remember sneaking Gatorade because it made me feel half human. And also to just not feel like I had to keep up with my peers, that I could sit down and I could take it easier and that that was all right.
[Eirenne]
Mhm, yeah, the ‘you don’t have to do all of the things, all of the time, with everyone else’ was a big thing for me, too.
[Allegra]
Also just, you’re not lazy. I think that is the biggest thing; it shapes almost every chronically ill person I know, of just this understanding that — of growing up with not being able to keep up is just this, at least for me, this sense of well, I’m just lazy.
[Eirenne]
‘I should be trying harder.’
[Allegra]
Exactly!
[Eirenne]
‘If I tried harder, then I could do it.’
[Owen]
Absolutely.
[Allegra]
When it’s not the case; you are actually fighting a harder battle.
[Owen]
Yeah, growing up especially in the ballet world, I was getting hurt all the time, and I was always in pain and always a mess, and I genuinely thought that everyone else had the same struggles as me and was in the same amount of pain as I was and that I was just a baby about it and not trying hard enough. Because, especially when you’re young and have basically no perspective, it’s impossible to know how it feels to be in someone else’s body and two, you have no way of knowing that your experience isn’t average. And so I would tell myself it’s ok to take breaks. More breaks. No, no, no, more breaks. And to not push myself so hard. And I think I would also send a pair of compression socks back in time, because those can be pretty helpful.
[Allegra]
Yes!
[Owen]
One of the fortunate things about compression stuff becoming such a trend in athletic wear is that it’s very available now, which was not even as much the case five, 10 years ago. I have a really great pair of compression socks that are wool, they’re washable wool, and they’re so comfortable.
[Allegra]
I wish I could wear compression socks. My fibromyalgia, which is one of my other diagnoses, mostly presents as this really intense skin sensitivity, so anything tight that’s around my skin I can think of nothing else.
[Eirenne]
Ouch.
[Owen]
Yeah, that’s a tough one.
[Allegra]
It’s unbearable.
[Eirenne]
For me, I’ve got compression stockings but my proportions are a little weird. Like, my limbs are slightly short, and so the ones that fit around my legs are slightly too long and so they end up rubberbanding around my knees, so I tend not to wear my socks all that often. But, I have a couple pairs of compression leggings that — they’re relatively light compression, but they’re still helpful. I’ve actually ended up recommending them to other people who have as-yet-undiagnosed dysautonomia. When I had a friend describing that water tasted gross and that no matter how much water they drank they still didn’t feel good and they were still dizzy, and I’m like, try salt. And salt helped, wonder of wonders! As did getting a pair of compression leggings. It’s like, hmm… You start seeing these things when other people describe their symptoms to you and you’re like, hey, that’s familiar.
[Allegra]
Yep, that’s how—
[Owen]
Yeah, absolutely. I’ve been helping a friend of mine who recently got diagnosed with orthostatic hypotension, and it’s pretty mild for her, but you know, it’s enough that — she’s still figuring out mitigation strategies, and she’s in that stage where, ‘oh yeah, now all my weird, incongruous symptoms make sense!’ so I’ve been helping her and giving her some advice, and compression stockings and salt were the first two things.
[Allegra]
Yeah, I would not have gotten any of my diagnoses if not for a friend posting about her POTS experiences. She started writing about them on her Facebook posts and being very open and upfront about what the symptoms were and how she was dealing with them. And one day I sort of stopped and read one said, wait, no, that’s exactly how I feel every single day! And I was able to reach out to her and say, hey, what’s this about? She gave me a whole bunch of resources. I went in, I then realized I had this other disease, Ehlers-Danlos, in the family and it was co-morbid and I looked into that. And then the most amazing thing happened a few years later where I was doing the same, I was describing my journey and she contacted me and said, hey, can you tell me more about this other condition — it turned out she had that, too. So we actually ended up helping each other, and it is the foundational reason why I’m outspoken about my disabilities and about my symptoms, because somewhere out there someone is listening who hasn’t been diagnosed yet, who does not have a name for this, and I want them to find it.
[Owen]
I found out about POTS, that was like the first form of dysautonomia that I knew about. I found out about it when I was trying to figure out what was wrong with my joints. I just kept getting told that I was hypermobile, hypermobile, hypermobile. They’re like, well, it shouldn’t be causing any of these problems. Except, I had all of these problems.
[Eirenne]
Yes, thank you, your diagnostic label is nice, but it doesn’t cover everything. Let’s find out what the rest of this is, please.
[Owen]
Right, exactly. They’re like, well, usually this is benign. I’m like, well, I’m in a lot of pain, so. I found on a forum people talking about hypermobility and that’s where I first heard about EDS. It was something I had to bring to my doctor; she had never heard of it, she kept trying to diagnose me with Marfan’s Syndrome, which is a sort of similar disorder but people with Marfan’s have to have a particular body type which is very much not me. And it was like, oh, you almost fit all of the diagnostic criteria for this but you’re just too… short.
[Eirenne]
Allegra, Owen, thank you so much for coming on to talk to us today. This has been a really enlightening conversation and I’m sure it will be helpful to a lot of people.
[Owen]
Well, thank you for having us.
[Allegra]
Thank you so much for having us on.
As I said at the end of the TBI episode, we have some new things in store for season 2. The fantastic karaburrito has revamped all the show’s artwork which you can see on our website or any of our social media pages, there’s a new YouTube channel of the episodes in the works for those that prefer that format, and very exciting to me, our Support page is now live with some options to support the podcast beyond rating, reviewing, subscribing, and sharing.
As always, if you check the website for this podcast, you’ll find a full transcript of this conversation, plus links to all the things we talked about today.
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Tips and Tricks on How to Be Sick 