Vanessa Grenier talks endometriosis, crohn’s disease and fatphobic doctors.
Listen on: Apple Podcasts | Google Podcasts | Spotify | Stitcher | RSS
Transcript
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
Today I’m talking to Vanessa Grenier about endometriosis and crohn’s and terrible doctors who think that weight loss is the solution to every problem.
This week’s transcript is going to be a little late because of my own grumpy body and crowded appointment schedule this week, so I apologize about the delayed accessibility.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
[guitar riff]
Brianne: So tell me about your health as a kid.
Vanessa: So growing up I’ve always kind of been the sick kid, even when I was born. So I had the umbilical cord wrapped around my neck, like several times. And so… but long story short, fast forward to like fifth grade. I got super duper sick and the doctors didn’t really know what was wrong. my parents took me to several doctors who were like, “I don’t really know. Your daughter’s sick, but we don’t know what’s up.”
Brianne: And what did your symptoms look like at that point?
Vanessa: So I had really bad stomach cramps. It felt like just daggers stabbing in my belly. Like anytime when I woke up it was just awful. I always passed gas a lot. My parents just made fun of me like, “Oh, you just eat a lot of beans!” I’m like, “Yes, but I hate beans.”
Brianne: Like by itself it could be funny.
Vanessa: Yeah. And I had a lot of kidney issues, so I have come to find out that I had reflux of my, I think it was right kidney. But I ended up being hospitalized for about a month and everybody was kind of like, “You don’t really seem sick. What’s wrong?” Like I was in the hospital ward with all the kids with chemo and I’m like, “Uhhh my kidney’s screwed up and my guts are funny. I don’t know what’s wrong.”
Brianne: “It’s kind of a mystery, but an uncomfortable one.”
Vanessa: Yeah, and they’re like, “I think she just maybe has anxiety.” And so they just kind of kept telling my parents that I just have a lot of stress in my life and that I maybe just needed to slow things down. It was like, “Okay, well, not really stressful but… that’s fine.”
Brianne: You’ve gotta get some good child de-stressing activities in there.
Vanessa: Seriously. And I mean, I guess to a certain extent, I probably did have some anxiety growing up as a child because my parents split when I was, I don’t know… How old was I? Shoot, pretty young. And so we bopped around from mom and dad’s house. So of course that probably adds to a lot of stress. At the same time, it’s also kind of like, hello! Something very real was happening, but doctors were just not really wanting to listen. And so they were just like, “Okay, she’s really super sick. We’ve got this kidney issue and don’t really know what’s wrong with your guts.” But the kidney… sorry, I also have brain fog, so… [Vanessa makes a noise like a record scratching]
Brianne: No, no. I will say, like I forget the word for malaria every time it comes up. So throughout the episodes I’ve tried to call it so many different things because of my own brain fogging so… [Vanessa laughs] So I don’t mind and I’m not worried about linguistic accuracy, we’ll say.
Vanessa: Perfect. Sounds great. But yeah. And so I don’t really remember all of what was wrong when I was younger and what all transpired. But I was in the hospital for about a month and they finally got everything figured out and rearranged with my kidneys and I was healthier. But I still, my gut was just shitty. And they’re like, “Well, maybe you’re just lactose intolerant, don’t eat milk.” So it’s like, okay… so I drink soy milk, but still, you know.
Brianne: And were you on any medication? Did they put you on any medication for the kidney stuff, or did it just kind of… pass?
Vanessa: I was on… Oh, what was it called? Shoot!
Brianne: Something! It’s okay.
Vanessa: Oh my lord. It as an antibiotic. And it’s a really common one, but now of course, drawing a brain fart as to what it was.
Brianne: But there was some medication and it helped. But then even once that was cleared…
Vanessa: Yeah, even once that was cleared, I still was just super sick and I kept getting UTIs and kidney infections and they told my parents that maybe it would just resolve. And so I don’t know. Apparently the reflux did resolve. But of course… Man, I was trying to talk through everything with my boyfriend. Like, here’s the story I remember, so I don’t forget things. Of course now everything just whoosh!
Brianne: No, it’s so hard to remember all of the details. And it’s fine to get the gist of it, but once you think back, you’re like, “Oh man, there was a lot of stuff going on.”
Vanessa: Yeah. And I just remember as a kid, the first time I remember just realizing that I’m not normal, I was in a Payless and my stomach just felt like I had somebody just daggering and like punching in my stomach. And I just lay down on the ground and my mom was like, “Oh, what’s wrong?” And then after that I went to the hospital. And then so fast forward, I have kind of always had shitty periods as a kid. I started menstruating in the fifth grade. And so that’s pretty young for…
Brianne: Yeah, that’s pretty early.
Vanessa: And then I was like, “I don’t know what’s happening! I must’ve done something wrong!” And I told my mom and she’s like, “Oh, you’re a woman now!” So I was just like, “What does that even mean?” [laughs]
Brianne: Great.
Vanessa: And so I just, my entire life growing up, people were like, “Oh, it’s shitty periods. Periods are awful. They’re meant to be awful. It’s just part of being a woman. You’re lucky, it’s great.” And I was a very active kid in high school. I played volleyball and softball, but then I slowly had to start pulling away from that because I couldn’t just keep up with everybody. It was too hard. I was so exhausted and my coaches wre like, “Run that suicide faster. You can do this.” And then the last time in practice I was running a suicide and then my knee just kind of gave out and it just dislocated for no reason.
Brianne: Oh, that’s a bonus!
Vanessa: So I was like, “Thanks body!” And then I didn’t get super… like I got the worst sick around 2014, I think it was. I was in hair school, I was going to hair school full time and working as well. And so I was doing something every single day. And the first time I got sick I was in the ER for about 13 hours with my friend. And it was just awful. And they were like, “Oh, you have tattoos? Okay, okay. Oh, is this your girlfriend?” And they’re like, “Oh, are you drug seeking?” And what does this all have to with… like I’m sick, help me.
Brianne: Yeah. “I’m confused by all of your questions.”
Vanessa: I know! And at about hour 10, they finally were like, “Alright, we’re gonna do a CT, let’s see what’s going on.” And I come back from the CT and they’re like, “Oh, so you have a pulmonary embolism. If you have family in the area, you should probably call them because this is very serious.” And I’m thinking like, “Oh. My. God. I went into the ER just because I had stomach cramps and really bad period pains and I felt like I had a migraine from hell. And then they’re telling me now I have a pulmonary embolism. And so I called my sister, I called my mom, and I’m freaking out. And everybody was like, “Okay, okay! We’ll be there. It’s okay. We’ll figure it out. We’ll figure out a way to get there.” Maybe, I don’t know, 20, 30 minutes later, he’s like, “Oh, j/k! I read the scan wrong. You actually, it’s just you have a nodular something on your lung.” And so I was like, “Uhhh, okay…”
Brianne: “Is that better?”
Vanessa: I know! Uhhhhhhhhhhh? So they gave me, they asked if I wanted painkillers. I was like, “No, I don’t want painkillers because they don’t work.” And they were just like, “Are you sure? You should probably take these, you’re in pain.” So I originally was like, “Okay, fine, I’ll take them just so I have them.” And it was, of course 10 milligrams of oxy that doesn’t do anything, but for some people it works some and I’m just that lucky person that it doesn’t. And so, fast forward a couple months after that, I got a call from the Seattle Cancer Care Alliance and it was first thing in the morning and they’re like, “Hi, this is so and so calling from the Seattle Cancer Care Alliance, we’re calling because your doctor told us you have lung cancer.” And I was like, “Whaaaaaaaaat?”
Brianne: “Excuse me, stranger?”
Vanessa: And at this time I had just started dating this guy. He’s my boyfriend now, we’re still together. But we had just started dating maybe like a month, and I’m bawling, and it was the first time that we stayed the night with each other and he’s like, “ahhhhhhhhh.” We hang up and I look at him and he’s like, “What’s going on?” And I’m like, “So…. I think I have lung cancer.” And he was just like, “What?!” We just start… And I’m crying and he’s holding me like, “What the fuck is happening?” And I’m like, “I don’t know! Oh my god.” And then all of a sudden I get all these emails from the Seattle Cancer Care Center about living with cancer, how to cope with it, what to do, here’s all these steps and financial processes. And I’m like, “[gasps] I have cancer.”
Brianne: “And this is how I found out.”
Vanessa: Yeah. And so I was like, “Oh my god.” And then I waited for like a month for the appointment and the doctor… I get in there and I was like, “So do I have cancer?” She just starts laughing and she was like, “No, you don’t have cancer. You have a nodule on your lungs.” So I was like, “Oh, okay. Well… What?!”
Brianne: Yeah. “Who told the cancer people that I have cancer because they’ve been sending me a lot of information that is terrifying.”
Vanessa: And about cancer.
Brianne: Yeah! Oh my god.
Vanessa: Yeah. And so she’s like, “Oh, I’m sorry. That’s just kind of general stuff that we send over.” I’m like, “No!”
Brianne: Rethink that.
Vanessa: Exactly. I’m like, this is the Seattle Cancer Care Alliance. Like you guys are the top, so you should kind of get your stuff together, guys, like what the heck. And so that was resolved like, “Okay, so you’ve just got this nodule on your lung. We don’t really know what it is, we’ll follow it.” And so that ended up being fine, but then I still just kept getting excruciating periods. But then the period pain just kind of throughout, even when I wasn’t on my period. And I kept going to the ER like, “I don’t know what’s wrong! And they were finally like, “Okay, we’ll do a pelvic ultrasound. I don’t really think you need it, but we’ll do it.” And so they come back and they’re like, “Oooh, yeah. There’s a mass on your ovary.” And I was like, “Okay.” So they send me home and they were like, “Yeah, follow up with your doctor, blah, blah, blah.” And my doctor calls and I’m now, I’d graduated hair school. Oh, of course. I missed the most important part of hair school too. So, it’s in the middle of hair school. So I’ve been in hair school for maybe a year now and I’m in the final phase. I’ve got maybe a couple months more to go. And I was doing a perm wrap with one of my instructors and my fingers went numb. And I was just like, “This is really bizarre. I’m not really functioning right.” And then I started, I thought that I was having a normal conversation just like this, like we’re talking now. And then she just looks at me and she’s like, “Are you okay?” And then I dropped the perm wrap and I was like, “What are you talking about? I’m fine.” And then I started stumbling through my words and she’s like, “I think you should sit down.” And she said that I was just looking at her like, [Vanessa says drawn out nonsense syllables]. And I thought I was talking like normal.
Brianne: Right. And it’s like a word salad.
Vanessa: Yeah. And so later, like maybe an hour later, I’m washing this woman’s hair and to me it felt like really warm water. And the client just like, shrieks out because it’s ice cold water. And so I was like, “Well, allright.” And then maybe 20 minutes later I got a really intense migraine. And then just from there I was like, “Okay, I need to go home.” I went to the ER and they’re like, “Yeah, I don’t know. It kind of sounds like you maybe had a mini stroke. But your heart is okay. Like everything is fine.”
Brianne: …Now.
Vanessa: Yeah. And so I was like, “Okay, well…” So it’s just another weird thing to chase. And then, so moving back into the future…
Brianne: Sure. So you have a mass.
Vanessa: Yeah. And so I have a mass on my ovary and I’m at work at the salon and I am on my break. I’m like, “Oh shit. I have a couple of missed calls from my doctor, let me see my voicemail.” And she’s like, “Hey Vanessa, this is Doctor so and so, can you please give me a call back?” So I call her and she says, “We think you might have ovarian cancer.” And so I was like, “What?!” So here we go again with the fricking cancer. So I was like, “Ooooookay.” She was like, “You need to have surgery because we need to figure out what this is. You’ve got to get a biopsy, blah blah blah.” And so now I’m going to a gynecologist and the gynecologist is just like, “Oh no, we don’t think you have cancer.” And so I was like, “Okay, then what is it?” She was like, “Well, I think you have endomeetriosis.” And I was still like, “What is that?”
Brianne: Right, so here’s another thing…
Vanessa: Yeah. And so it’s now March 2015 and I go in for my first laparoscopic surgery, and sure enough I have endometriosis. That mass ended up being a chocolate cyst and it totally just took over my right ovary. So they took my right ovary. I still have the tube, but no little ovary, I’ve just got little lefty. [laughs]
Brianne: Just the one.
Vanessa: Just the one guy! And my doctor, like I knew nothing about endometriosis and she was just… I trusted her fully and blindly and was just like, “You are my goddess, you saved me! Like, oh my god, you’re giving me my life back!” And she was like, “I have endometriosis myself, this is what I did.” And so I just blindly followed her and I did lupron for… She wanted me to do it for six months but I could only stand it for three because oh my lord. I don’t know if, do you know what lupron is?
Brianne: No, so tell me about that.
Vanessa: So it’s… I forget, of course, the technical term for it, but it’s like a hormone replacement thing. But they also use it for prostate cancer, like a chemotherapy drug.
Brianne: Intriguing, intriguing.
Vanessa: It is… It is a very gnarly, it’s awful. It didn’t work for me. Some women find that it works for them, but it was just the absolute worst thing. I had really awful hot flashes, like the most intense hot flashes. I gained 80 pounds in a matter of like, I don’t know, two or three months.
Brianne: Wow. Like a lot of hormonal side effects.
Vanessa: A lot! And my doctor was just super like, “Um, I think you’re eating things wrong and you’re not working out.” So I was like, [groan]. And she told me, “Maybe you should stay away from eating fast food stuff. Maybe try and cook at home more.” I’m like, “I don’t eat fast food. Like, come on lady.” And she just latched on to the weight gain and was like, “There’s something you’re doing wrong.”
Brianne: Suddenly!
Vanessa: “It’s something you are doing wrong.” And so I was like, “Okay, yeah, I’m just magically gaining weight. Interesting.”
Brianne: Yeah, “I made a choice to become much less healthy aggressively over three months in all of my habits, and that explains it.” Yeah.
Vanessa: Yeah, exactly. And I started getting all of my endometriosis pain coming back and she was like, “No, there’s just absolutely no way Vanessa. I excised everything. I got rid of your endometriosis.” So I was like, “What, lady?” Like it’s not possible to just cure of endometriosis because that’s not a thing.
Brianne: Yeah, like you can remove the tissue. But that doesn’t mean that there won’t be more forming because I mean, we menstruate every month, so…
Vanessa: Right? Ugh, yeah. And so I had just a hell of a time trying to find a sort of birth control drug to help maintain my periods. And of course with endometriosis you shouldn’t have estrogen. But I didn’t know that until several years down the line doing my own research. And my doctor, she was like, “Well, I really want to put you on an estrogen pill because lots of women find that this suppresses their menses. But your blood pressure’s just too high. You’ve got to work on your blood pressure. Maybe lose some weight and it’ll lower your blood pressure.” And so I was like, “Okay.” And so I started seeing a physical therapist, tried to do everything. So I was like, “Yeah, I can’t exercise.” Like I am so exhausted that blowing my hair just exhausts me. “It’s because you’re not working out, you know, you had a surgery, you’re probably depressed.”
Brianne: “You’re deconditioned.”
Vanessa: Yeah, “You’re deconditioned, you’re depressed, you’re eating ice cream.” And so I was like, “Oh god, no.” And so I finally did progesterone only, and I of course can’t remember the name of the pills that I tried. But so finally progesterone only and I was getting my menses maybe like once every other month. And so I was finally like, “Cool, I get my suppressed menses every now and again.” But I just had extreme nausea all the time. But I’ve come to find out that’s also because I have crohn’s.
Brianne: Right. And so at this point, can I pause you for a second? Because you had stomach problems kind of the whole time, but no other event to make you think more or less about it, it’s just like a feature of your body up until this point?
Vanessa: Yeah.
Brianne: And then actually I was also wondering, so you said they told you when you were younger, “Maybe you’re lactose intolerant, avoid milk.” Did you do any other dietary stuff along the way before diagnosis?
Vanessa: No.
Brianne: No, that’s fine. There’s so many things that people try, it’s always worth asking. But many of them aren’t helpful and I’m sure, especially when it’s crohn’s. Okay. So you’re nauseous a lot from the birth control.
Vanessa: Yeah, and finally I was just like, “I don’t really know what’s going on. My gynecologist isn’t listening to me.” And I had just maybe a year of me emailing her every couple months being like, “Hey, I have all this pain.” And she was like, “Look, Vanessa, I don’t really know what to do with your pain. You should maybe go see a pain management person or see a therapist.” And so I was like, “What?!”
Brianne: Yeah. “Okay…”
Vanessa: Yeah. And I was like, “I get it. You don’t think my pain is real.” And so finally through instagram and just using the hashtag EndoStrong or EndometriosisAwareness, I found a bunch of other women who were like, “Hey, do you have an endometriosis specialist?” And I was like “An endometrial who, what? There’s a specialist for that?” And they were like, “Duh, there’s a specialist for everything.”
Brianne: That’s true.
Vanessa: [laughs] I know! And so I was just like, “Well, I guess duh. The joke’s on me for never knowing, right?”
Brianne: Yeah. I mean you think that should be a gynecologist’s job. I assume the specialist is a gyno, but…
Vanessa: Yeah. And you would think that a gynecologist would be like, “Hey, you have endometriosis. Let’s get you to the specialist who knows what they’re talking about and what they’re doing.” But nope, my doctor didn’t even mention that this was an option. And so finally, after I finally broke up with my doctor who told me that I had several different forms of cancer.
Brianne: Sure yes, that seems fair.
Vanessa: I know! I found a new primary care doctor, just from google searching doctors and finding people who had different reviews. And of course, who’s going to write reviews? Some people… [tentative noise] So that’s kind of hit or miss sometimes. But I found one, my primary care doctor, and she was just, she was my quarterback. Finally after years and years and years of just seeing a bunch of different doctors and people being like… Oh, also I forgot to say, my gynecologist before I dumped her, I started losing weight. And so I’ve lost now almost all of the weight that I’ve gained.
Brianne: From the medication?
Vanessa: From the medication, yeah. And she was just like, “Oh, Vanessa, if you had cancer, you would have lost 60 pounds.” And by this time I had lost 40. And so I looked at her and I was like, “Hey doctor, it’s not that I think I have cancer, it’s just that I think something is wrong. I’m losing weight and I’m not trying.” And she’s like, “Well, you’re eating better.” Like, “Yes. Sure, that’s the initial weight loss could account for, but I’m steadily losing and I’m not trying.” And she just looked at me and she put her hand on my shoulder and she goes, “Vanessa, your body is super excited to be losing weight. I think you should just piggyback on that.”
Brianne: Oh my god!
Vanessa: And my jaw just dropped.
Brianne: Jesus.
Vanessa: And I just… I was like, “Okay.” And at that time I was like, “Yep, I’m never coming back to you.” Because no, that is not real. That is not a thing, piggyback on your… what?!
Brianne: No! Definitely not a thing! In addition to other parts of your story where you’re like, “Well, instead of treating me, you’ve repeatedly told me to lose weight. Now that I am and I’m also worried about it, you’re like…” God. I mean people talk about this all the time. I know that. About how fucked up medicine is with respect to weight. But even so, it’s so fucking shitty to hear the moments. Like you’re a doctor, you should know better! Rapid weight loss isn’t a good thing.
Vanessa: Right? I know. I’m just like, “Whaaaaaaaa?” And so I finally… okay, so back into the future, or I guess past again? [laughs]
Brianne: Wherever we are!
Vanessa: Yeah. I don’t know. And so back to talking with my new awesome primary care doctor.
Brianne: Okay, new PCP.
Vanessa: And she was like, “Okay, so we need to send you to the ER again.” And so I was like, “Ughhhh, god, they’re not going to do anything for me.” But she’s like, “Well, I need to just make sure it’s not your appendix or your endometriosis, that you don’t have any cysts that are rupturing or blah, blah, blah.” And so I was like, “Okay, I see your point, I get it.” So of course I went to the ER again and they were like, “Yeah, we don’t really know what’s wrong. All your scans look great. You don’t have any cysts. Your pelvis, your uterus… It’s all remarkable!” Like, oh, great.
Brianne: Yeah. “You’re missing an ovary, but otherwise it looks good.”
Vanessa: [laughs] Yeah. They were like, “Oh yeah, you’re losing weight. You’re nauseous all the time. You can’t really eat. You get sick all the time. Yeah… gluten fucks up your guts? Maybe don’t eat it.” But I don’t, so… But I’m still sick. And so I finally get my endometriosis specialist, which I had to fight to get to because I have state insurance, which I am so thankful and lucky for, but I had to jump through so many hoops to get to the different specialists and doctors.
Brianne: Like getting referrals approved and stuff, that kind of thing?
Vanessa: Yeah. And then sometimes I’ll get the appointments and then it’ll come down to a couple of days before and insurance will be like, “Yeah, we’re denying that request so you can’t get that scan done anymore.”
Brianne: That’s so frustrating.
Vanessa: And then it’s just like waiting, waiting, waiting. And so I go in and see this endometriosis specialist and it was just like night and day. She just listened and was just like, “Yep, something’s wrong. And I think that you have to have another surgery.” So I was like, “Ugh. Dammit.” And it’s so unfortunate that that’s the baseline of care for women with endometriosis is that we’ve got to cut your guts up to see what’s going on in there.
Brianne: Because that’s the laparoscopy, which is pretty standard for endo, right?
Vanessa: Yeah.
Brianne: For everything… Like diagnosis, treatment, yeah.
Vanessa: Yeah. And even, it just blows my mind too that I’ve met women who have been like, “Yeah, I have endometriosis and my doctor tells me that there’s nothing they can do for me. That it’s just a lifetime of surgery and that’s it.” So I was like, “Well I mean, there’s way more than that, but like, okay.” And so it just breaks my heart that doctors are just so like, “I don’t know. I will tell you anything and everything to get you out of my office and out of my hair because I don’t know how to help you.”
Brianne: Yeah. “If I can’t do it, then please just go.”
Vanessa: I know! Gosh. And so I finally had my second laparoscopic surgery in October of this last year, so October, 2018. And so I’m healing up great. So far so good. You know, every now and again I’ll get the pains from endometriosis. I now have an IUD and oh lord, the first few months with that though were [highpitched sound].
Brianne: Tough.
Vanessa: Yeah. I was like, “Why did I do this to myself?!” But I just had to keep reminding myself that I was A, healing from a surgery and everything was just kind of trying to heal and fuse back together and then B, my body’s just trying to get used to this thing in my uterus.
Brianne: Yeah. And what kind did you get?
Vanessa: I got the mirena.
Brianne: Which is like, low hormone but hormonal, right?
Vanessa: Yeah. And I also discovered too with that lab, the second lab, that I have adenomyosis. And so that is also why I have really painful periods or in between periods. So adenomyosis is just basically endometriosis in your uterus, for like layman’s terms. So you can develop like really painful… oh shoot, words man. Like endometriosis that just basically develops into the uterine wall.
Brianne: So it’s like not shedding properly? So you’ve got some stuff staying in there that does not want to be there.
Vanessa: Nope. Yeah, my uterus is marbled and beautiful.
Brianne: Oooooh, that sounds fun.
Vanessa: I know, I’m so fancy. [laughs] But then after that surgery I was just like, “Something is still wrong. My stomach is just always upset. I’m in the bathroom all the time.” And it was just intermittent, like it was constipation and diarrhea. In 2014, they were like, “Well maybe you might have crohn’s.” But I wasn’t presenting with all the classic… They were like, “Well you don’t have diarrhea yet.” But then of course it eventually happened. But it’s just like, why do people think that crohn’s is just diarrhea? It is so much more than that.
Brianne: Yeah, it’s pretty varied.
Vanessa: And I forgot to mention too, I also have neuropathy, neck and shoulder pain and joint pain. And for a while they were thinking maybe I had fibro. And so they were like, “Yeah, you have fibromyalgia.” Then I went and saw this naturopath and she was like, “Uhh, fibromyalgia is just kind of like a junk term. It’s just something that they call it. They just throw medications at you.” And I was like, “Oh, okay. So help me. What do I have though? Or like, I dunno, instead of just saying, ‘Yeah, no.’ Help me.”
Brianne: Yeah. I think that’s what’s so hard about fibro especially, it’s a symptom cluster diagnosis, but it basically is idiopathic nerve pain and fatigue. So it’s like… you have it, we don’t know why. Maybe it’s treatable by lyrica, which has some pretty tough side effects from what I understand. But if it helps, that’s great. And if it doesn’t help, then now you have these symptoms and we can’t explain them. That’s a frustrating thing, yes, about fibro diagnoses.
Vanessa: Yeah. And then I forgot to mention too, because I’ve had so many chronic illnesses, I also have POTS, which I know you know, but for people that don’t know it’s postural orthostatic tachycardia syndrome. But a lot of people in other episodes have had it too.
Brianne: Yeah. I think it’s just a really common comorbidity. Because they also don’t know what causes it, so it seems very likely that it’s caused by whatever is underlying the rest of it. Like I think it goes along with neuropathy a lot too. And that makes sense because it’s probably, I mean it’s a nervous system dysfunction as opposed to a cardiac dysfunction. But it sucks!
Vanessa: Yeah. And before I got the POTS diagnosis, I was just like, “God, I don’t know what’s going on!” I blacked out at workand they were like, “Whoa, that was really scary.” I was up talking one moment, walking up stairs, and then just bloop! On the ground. And before I saw a cardiologist, he was looking at me like “POTS? Where the heck did you get that from? Like get off of google, lady.”
Brianne: Yeah. “Stop googling your symptoms.”
Vanessa: I know! And so I was like, “No, my ortho…” Because I also had hip pain. I have impingement in my hip, it’s lovely. But then she used to do family medicine and she was like, “Well let me see if I can try and use my brain to figure out what’s going on.” And she was like, “I think you have POTS.” And then of course I got the tilt table test, but the cardiologist after he scoffed like, “Huh, where did you get that? That’s not a thing.” So he eventually got me the tilt table. He was a real gem of a guy.
Brianne: So the first one didn’t do tilt table?
Vanessa: Yeah. No. So the first person was like, “I don’t really know how to diagnose this, so let’s get you to a cardiologist.” And she just did the general like, “I’m going to have you sit, I’m going to monitor, and then stand.”
Brianne: Yeah. That’s all I’ve done.
Vanessa: Yeah. And this cardiologist I saw, he didn’t want to look at me. He would either talk to my boyfriend or the ground. I was just like, “Yep. Definitely not coming back to you.”
Brianne: Yeah. That’s one of my least favorite characteristics in people in general. People in general that we meet that only talk to my husband. Like, “Oh good, I’m glad that I’m standing here.”
Vanessa: Yeah. “I exist too, come on guys!”
Brianne: But especially when it’s about your own body. Like… That’s messed up.
Vanessa: Yeah. And so he was just like, “Yeah, I don’t really think something’s wrong with you. Maybe you should just eat some salty snacks and get some exercise. If you lost some weight, I can guarantee you losing weight would be so much better. Have you also tried yoga?”
Brianne: Yeah. Oh my god. That’s like… That’s good. That’s all of the tropes at once.
Vanessa: I know! So I was like, “Cool, cool, cool. Thanks guy. See you never, bye.” But so he finally begrudgingly was like, “Ugh, I guess I’ll do the tilt table, we’ll see. It’ll probably come back normal, but let’s do it.” So he did the tilt table and then he was like, “Oh, you do have autonomic dysfunction. My bad! Whoops.” And he was like, “So when you do go upright, your heart rate just sky rockets.” And so I have high blood pressure anyways. And so they were like, “We don’t really know why you have high blood pressure. You’re not diabetic, your blood sugar is fine. You’re overall generally healthy.” And so I was like, “Something is wrong. I’m sick.” And also in the mix too, I saw a sleep doctor and so went and did a sleep test. And so I have sleep apnea. I hated getting used to my frigging cpap, it was just the worst. Like it’s not cute looking at all and it’s loud, noisy, it’s uncomfortable and just meh. But eventually… I kept taking it off and just not wanting to sleep with it. But the thing that scared me the most was I actually had an apnea while sleeping and I was in the sleep where you’re kind of sleeping but you’re starting to wake up, and then all of a sudden I stopped breathing and I was aware of it because I was kind of awake. But I was like, “Okay Vanessa, you need to just wake up because you’re not breathing.” But I didn’t, I was just still not breathing. And then I opened my eyes and I was like, “Okay, I’m awake but I’m not awake!” And then I was just finally like, “Oh god, air!” It was the scariest thing. So like, yep, right, mask. Forever and always, never again.
Brianne: That seems like a better option. And did you notice a difference in anything? Just because sleep quality can really help, obviously. It’s not like the…
Vanessa: End all.
Brianne: Yeah, whatever we can say. It’s not the solution to all of your problems, but did you notice a difference when you started using a cpap?
Vanessa: Uhhh… kind of. I mean, I was still super tired, but the rings around my eyes got less, but I just still couldn’t figure out what was wrong. Like I had exercise intolerance still. Sometimes I could walk to the corner to get the mail. Sometimes I couldn’t. Sometimes I could walk down the block to the park. Sometimes I couldn’t. Sometimes I could do stairs, sometimes I couldn’t. So there was just no rhyme or reason. So doctors were like, “Yeah, this doesn’t really make sense lady. I think you’re kind of…” They were like, “You’re making it up, because who’s healthy to do one thing, one moment and then the next they’re like, ‘I don’t really think so.'” And at the time I was working full time, well, four days kind of almost full time. And I work at a tattoo shop and I run the front desk. And so they’re like, “Oh, you’re one of the bosses? You’re in management? You’re sick? There’s no way you’re in management and you’re as sick as you are.” And so I was like, “Well, I don’t know what to tell ya. I’m doing it.”
Brianne: Yeah. You have to, so… you’re making it work. And were you sitting a lot? That was a sitting job.
Vanessa: Yeah. Thankfully my job is… Oh my god, I don’t know what I would do without my boyfriend or my job. It’s my second family. Without them, I feel like I would be so lost because I work three days a week now. And even then, sometimes it’s too much and I just… Thankfully I know my limits now and they’re super supportive and they’re like, “Yeah, whatever you need. If you need to take a sit, that’s fine. If you can’t lift something, ask for help. Ain’t no thing.” And so I’m super fortunate in that aspect because a lot of people aren’t able to work. And one of my bosses, her brother-in-law has crohn’s. And so she’s like, “I see his life and he’s not working.” So they’re like, “You’re so lucky to be working.” I’m like, “I know! I am so lucky!” But I’m also so lucky and fortunate to just have bosses or people that work with me that are so understanding. Whereas at the salon they’d be like, “Okay, ummmm, you need to figure out what’s happening, because you need to sit again?” They’re like, “You’re my apprentice. You can’t be sitting.” And so I was like, “I’m sorry!” And eventually they were just like, “Yeah, you can’t do this anymore.” And so I worked in the call center for a while at the salon and I was just like, “I’m miserable. I hate this. I’m not doing hair. I’m getting yelled at by crazy people about their hair mix-ups.” And so then my boss at the tattoo shop, she was like, “Hey, do you want to come work with us again?” Something happened where they needed somebody and they only needed somebody part time. So I came back only working two days a week and then slowly, eventually they were just like, “Hey, do you want to do this?” And I started kind of feeling better and I was like, “Yeah, I can do this. I can be a boss.” Nooooo I could not. So I did. I tried for, I think it was maybe a year before my boss was like, “Yeah, hey, uh, do you want to maybe work a little less?”
Brianne: Yeah, like, “How is this going for you?”
Vanessa: And I was like, “Fuck no, I don’t want to work less! I’m great. I’m doing fine.” Like I got this, this is fine, this is fine. And then it got to a point where I was like, “Yeah, no, everything is not fine. I need to work three days a week and I can’t pick up any shifts.” And I was just beating myself up a lot because I felt unreliable. But I eventually realized like, “Hey, it’s not me that’s unreliable. It’s my body.”
Brianne: Right. And that’s hard because it feels like it’s the same. Like, “I’m just making a choice to not push through it.” On and on and on to a point that becomes totally unsustainable, like you say. Versus if you’re like, “I’ll just only work three days a week,” that can feel like not enough somehow. Like if you’re not hitting that limit of like, “Oh, this is as much as I’m physically capable of doing,” which causes burnout. I dunno. I’m now talking about myself, which is…
Vanessa: Oh no, you’re fine.
Brianne: I’m just thinking about it because it so resonates. And because I’ve talked to, including people with crohn’s, about like, how does work work? Like what accommodations would be ideal or what hours would be ideal? And it’s so individual.
Vanessa: It’s so hard. It is so individual and it’s so hard to find that balance. And even now some days, I had maybe a month and a half of just great. Because after getting diagnosed with crohn’s, I was taking prednisone and it was like, “Ahhhhh! Magical!”
Brianne: Which, we haven’t actually gotten to your crohn’s diagnosis in the story story. So why don’t we go back to the story?
Vanessa: Okay. Yes. So back to the story. Sorry guys.
Brianne: Yeah. If you’re taking detailed notes on a timeline…
Vanessa: I know people are probably like, “Come on! Stay on the line.” But so also, the shitty neurologist I saw. So bringing back to that point. He was the first doctor that I was like, “Okay, I’m going to put down all of my symptoms, just write them all down.” I don’t really care about doing them in a timeline because that’s just not really how my brain works. I just kind of remember them and write it as I go. And so I didn’t think to put it in a timeline as it occurred in my life because there’s just so much shit. And so he stopped me and he goes, “Wait, why are these not in chronological order?” And I was like “What?” And so I told him, “Well, I just wrote them down as I remembered them.” And he goes, “Well, my brain works chronologically. I don’t know about yours, but let’s get back to your little list.” And that’s what he told me, get back to my little list. And I was just like, “Uggggh, guy.” And of course it was in the nicer part of town in Seattle, so you could see most of my tattoos. And in the middle of talking about my symptoms he just says, “Why do you think women get tattoos?”
Brianne: [laughs] What!
Vanessa: Yeah. And so I was like, “Because they want them?” And he goes, “No! Why do women get tattoos?” And it’s like, “Because they want them, dude. Like, why do guys get tattoos?” And he was like, “Okay, well anyways, back to your list.”
Brianne: Oh my god. I don’t want to know what you think, because you obviously have an idea that you’re testing that is probably very offensive.
Vanessa: I know. It was just super bizarre. And so I was like, “I’m here for you to help talk about my brain.” And he was like, “Well, I guess you just have migraines.” And so I was like, “Oh wow, thanks for telling me something that I already know.” So he was just not helpful at all. I can’t even remember half of the shitty things he told me because he was just a not nice dude. And I probably in retrospect looking back, I should have complained because he said so many awful things in that little 30-minute visit that we had. And, oh! Because I have state insurance, he tells me, “I’m surprised that you got an appointment with me because we don’t take your kind here.”
Brianne: You’re like… “Thank you? For…”
Vanessa: I know, I was like, “My kind?!” And so it’s just like, well, I feel very fortunate being a white woman and having state insurance because I don’t get a lot of the pushback that people and minorities probably do. And that is so heartbreaking. And ughhhh, but that’s a whole nother story.
Brianne: Yeah. Of like, “Well, if you don’t have the fanciest insurance – whatever that might be, because insurance is a mess anyway – then you don’t deserve the level of care I provide where you come into my office and I judge you on your personal appearance.”
Vanessa: Right? He was just another doctor on the list of bad doctors. And then so fast forward to the diagnosis of crohn’s. Since 2015 I’d seen this GI doctor and I’ve had… I can’t even begin to tell you how many colonoscopies I’ve had, probably two or three, and I’ve had an endoscopy.
Brianne: Lots of scopes.
Vanessa: I know. And so I was just like, “Listen, something is wrong. No healthy person wants to go through the prep of a goddamn colonoscopy and then have a colonoscopy happen. Like, no, nobody, it’s not fun.” And my primary care doctor, she also had just recently gotten diagnosed with crohn’s. And so she was like, “Hey, you kind of sound like me. I’ve got a hunch. Let’s do an MRI, an MR enterography, of your abdomen.” And so we did that, had to do a little prep, drink some bottles and hang out in their office for an hour.
Brianne: All the gross stuff.
Vanessa: I know! And so they did the MRI of my bowels, and then waited a week for that. And she sent me an email and was like, “Hey Vanessa, you have crohn’s!” And that was November.
Brianne: Okay. So pretty recent.
Vanessa: Yeah, pretty recent. And so I went back to my GI doctor and he’s like, “Yeah, something’s wrong. I don’t really know what, but you could probably have a stomach bug, because that’s what the MRI could mean. You know, it could just be inflammation from a stomach bug.” I was like, “Oh my god.” But on the MRI it showed loops in the bowel and multiple reactive lymph nodes in my abdomen. So yeah. And so that’s what helped get me the diagnosis of crohn’s. So he was like, “Alright, let’s go and do your colonoscopy number two!” And I was like, cool, prepping for it. And we do it and it comes back normal. So I was like, “What? Are you kidding me?” And so he’s like, “Hey, I don’t really know what’s wrong. Let’s try the pill scope. Let’s do this.” And so I swallowed the little pill camera, but even that wasn’t usable because it just went through… my body digested it way too quickly. Every single image was blurred. And so I was like, “How the…?!” That’s my luck, of course. But thankfully my GI doctor was just like, “Well alright, something is wrong obviously. Let’s treat you as if you have crohn’s. So let’s move forward. And if you magically get better taking the prednisone and pentasa, then that’s the trick. You have crohn’s.” So I was like, “Alright!” Because I’m also anemic, we don’t know why. And I don’t have, they couldn’t find any bleeding anywhere. So sure as shit, I took a prednisone and within the first couple of doses, everything was gone. All of my joint pain was gone. I felt like a whole new person. I could eat gluten and feel great. Whereas it got to the point where I finally kicked gluten out of my diet and didn’t eat gluten anymore. If I took a bite of bread, I was just bloated instantly. And listening to your podcast actually, I heard about the gluten bumps, I had that! And so once I stopped eating gluten, those bumps went away. I stopped having those painful rashes on my arms. [sighs]
Brianne: Gluten rashes. I understand why people are skeptical. Like in the world where people say, “Well if you don’t have celiac, you don’t have a problem with gluten!” And you’re like, “Okay, well… bold. Bold statement.”
Vanessa: That’s not true!
Brianne: So prednisone is great while you’re taking it. But then you probably needed to come off of it at some point, right?
Vanessa: Yeah. So I’m currently tapering off of it and I’m only on 10 milligrams now and starting tomorrow I get to cut the pills in half and do that for two weeks. But I am so ready to not have prednisone in my body anymore because the rage is real. Like, oh. my. god. Like, “WHY ARE YOU DRIVING SO SLOW?!” Okay, they’re driving normal, they’re going the speed limit. This is fine.
Brianne: Yeah. This is the steroids talking.
Vanessa: And then when I got to like 20 milligrams was when my face started swelling, I’m still dealing with the residual swelling. Everything felt taught, my skin was just like, “Ugh. Everything hurts.” But now I’m a lot better. But all of my other pain is back. So I’m kind of worried that pentasa isn’t going to be the drug of choice for me. And I might have to do something like humira, but it’s such a scary drug. They’re all such scary drugs. If it works, it works.
Brianne: Yeah. Which is the extremely frustrating thing, right? So that’s early in the treatment stages and that makes sense. And yeah, crohn’s drugs are all pretty intense from what I understand. But if you can find one that works for you, it can make a very big difference in like all the things. Gotcha. Gotcha.
Vanessa: So, in addition to crohn’s, I also have… well I guess before I got the crohn’s diagnosis, I have nonalcoholic fatty liver disease. And so that was a doozy and a half to try and figure out what was wrong. Because I saw a hepatologist and she was like, “Yeah, liver does not feel pain. That’s not real. Livers… no. Nuh uh.” So I was like, “Well, I have pain where my liver is.” She was like, “Wellllllll. Yeah, it’s not liver pain.” Okay, thanks lady. So she was just convinced that all I needed to do was stop eating McDonald’s. Again. I’m like, “I don’t eat McDonald’s lady, what is with the McDonald’s?”
Brianne: Sound advice, if you’re in the middle of filming Super Size Me and actually only eating McDonald’s. But if that’s not your diet, then it’s really amazing that this many doctors make that assumption.
Vanessa: Right? Yeah. And they were like, “Uhhh, limit the stress in your life. You’ve probably got a lot of anxiety.” I’m like, “Yeah, I’m anxious sometimes, but I don’t have stress like you’re thinking.” Like normal people life stress. And sure, the stress of chronic illnesses on my body. But it’s like, those are things I cannot control. Literally can’t control that. And so she was like, “Yeah, just exercise. Lose some weight. Eat better. Your liver will thank you.” And so I was like, “Okay…”
Brianne: Just like your body was so happy it would magically…. god.
Vanessa: Yeah. And this entire time my liver enzymes have been high and nobody thought like, “Oh my god, look at this! Her liver enzymes, let’s check this out.” But so I fired her and hired her boss, and she’s one of the best hepatologists in Seattle. And so I went back to her and I was like, “Hey, yeah, I saw your colleague. She told me that livers don’t feel pain.” And she’s like, “Oh yeah. Well that’s a very common misconception. People who have nonalcoholic fatty liver disease do feel liver pain.” And so I was like, “Oh, hey, you need to tell that lady.” So that was one little tidbit I learned. And so I was like, “Well, I’m the rare… The one little issue with livers that does feel the pain. So thanks for ignoring me lady.” But then I’ve been doing more research and just stuff on my own and come to find out that crohn’s can cause liver issues. And we’ve been trying to figure out why I have liver disease because I stopped drinking and I started eating better. In theory, my liver should have fixed itself, but it hasn’t.
Brianne: So it’s a maybe byproduct of everything else but also maybe something that you can tackle on its own, kind of? Yeah. But mystery. And so we’re at the present now?
Vanessa: Yeah. At the present now. And I see my hepatologist tomorrow. She’s got this fancy little paddle, I don’t even remember the name of the test, but it’s some sort of paddle that sends sound waves into your abdomen and just measures the fat deposits on your liver to see if you’re in cirrhosis or if you have scarring or anything. So I was like, “Okay, cool.” So I don’t have to get an MRI. Less radiation. That is awesome.
Brianne: Much less invasive than everything else that you’ve been through? That sounds good.
Vanessa: Seriously, yes. Sign me up.
Brianne: Okay. And then the other thing now that we’re caught up, but I’m wondering, because you mentioned it a couple of times. Like you’ve done lots of research over the course of all of these things. So is there anything else that you have tried or want to try? Like whether it worked or didn’t work or you know, just across the board, how has your own research impacted all of it?
Vanessa: So what I have found that works for me the best with my pain or nausea or trying to get myself an appetite back has been marijuana. That has been… Like CBD has been an absolute game changer for me. Without it, I wouldn’t be able to function. Even when I get migraine, I’ll just be like, “Oh my god!” When I start to fill that titch at the beginning, I know it. I need to get that CBD. And then let’s see, of course diet, changing my diet, not having any gluten. I don’t eat any soy products because that has the estrogen, and then the endometriosis, gotta stay away. Let’s see. And then of course with my neuropathy, I take an old school antidepressant called nortriptyline. But I’m kind of finding that it doesn’t really help, but at least it’s been helping to keep my migraines at bay. So at least there’s that.
Brianne: That part is good. Yeah. It’s funny how when you have a lot of symptoms, you might notice differences in funny places.
Vanessa: Yeah. Yeah. And then… Oh, acupuncture! Acupuncture has been so helpful for me. I see my lady, I’ve been seeing her for the past four years now. Well three, actually three years and she’s been so helpful with helping me manage my POTS syndrome and endometriosis and all of that fun stuff.
Brianne: You just feel broadly a little bit better, which is the only way to measure these things.
Vanessa: I know. And I mean, it took a while for it to really kick in. Like I would say it probably took maybe two months of going maybe twice a week just because of how bad my migraines wre. I was getting probably like, five out of seven days a week I was having a migraine.
Brianne: That’s a lot of migraine.
Vanessa: Yeah. Like vertigo to the extreme and like I was on a boat, you know. And sometimes it gets so bad, I have to just keep my head cocked to the side like, “Oh, don’t worry. It’s okay!”
Brianne: “I just don’t need that other eye.” It does feel like a boat. It’s weird.
Vanessa: And what else have I tried? Yeah, narcotics don’t work. I can’t take like ibuprofen or tylenol because of my liver. But then it also just doesn’t work.
Brianne: It doesn’t help and it’s not…
Vanessa: Then why take it?
Brianne: Yeah. There’s no gamble there. And so that’s the kind of stuff because you never know. Sometimes diet is the thing. Sometimes it’s not. Sometimes… yeah. I’ve talked to a few people who like acupuncture. My insurance discounts acupunctureand I haven’t actually done it yet, but I want to. It’s interesting with stuff like that too, like, oh, an insurance company thinks that it might be worth not exactly covering but supporting in some way. So that’s kind of cool. Yeah, that’s a bonus. And we talked about work, we kind of talked about the other parts of your life. Is there anything else that you’ve been thinking about or that has come up while we’ve been talking or while you were listening to other episodes that we haven’t gotten to?
Vanessa: I mean, I feel like there probably is lots of stuff. But now I’m like mrrrrrr.
Brianne: Yeah. We’ll hang up and then you’re like, “Oh my god, I didn’t talk about this one thing that was huge two years ago.” It’s okay. That’s normal.
Vanessa: [laughs] But yeah, I mean, and then the whole other thing too is with friends. I did lose a lot of friends. Like, I’m super open and honest with my experience, and I did initially get a lot of pushback from people just being like, “Oh, you’re seeking… Like ‘woe is me’ kind of shit.”
Brianne: Yeah, “You’re just being really negative.”
Vanessa: I know. I’m like, “I’m just existing in my world and just sharing.” And since then I’ve had a couple of people just be like, “Hey, thanks to you, I have gotten diagnosed with endometriosis because I’ve been told my entire life that this was normal. Like, just to suck it up.”
Brianne: That this level of pain was normal.
Vanessa: Yeah. Or just people who… Like, I have friends that suffer from migraines and they’re like, “Yeah, I’m going to go talk to my doctor because maybe I have occipital neuralgia like you.” And I’m like, “Oh yeah, do that.” But I just… I don’t know. And so one of my friends, well she’s not a friend anymore, she was like, “I’m diabetic and I don’t tell people, so like, why are you? Like you are just, you complain so much.” And so I was like, “Wellll, maybe we just shouldn’t be friends anymore.”
Brianne: That’s like a great schism at the heart of chronic illness is like, people who think that it should be private and you should never talk about it. And then people who are like, “Hey, I’m going to make a social media account to talk about it because then I can connect with other people.” And like, there are a lot of benefits and sure, if someone who is not into that sees it, they might be like, “This is really intense.” But like, okay, don’t read it. Like there’s a whole community out there that it’s working for.
Vanessa: Just keep moving along. Or just maybe stop following me. I don’t know. But then that also does kind of hurt because I’m like, “Oh, my friend stopped following me.”
Brianne: Yeah. When it’s like your personal account or whatever and you’re like, “Oh, okay, this is just actually what my life is like. It’s not entertaining or positive enough for you.”
Vanessa: Yeah. But I just feel like for me, I dunno man. I just feel like I just… I vent, you know, and if it helps somebody it helps somebody. And if it doesn’t, then if anything it helped me because I just needed to get it off my chest instead of holding it in.
Brianne: Yeah, I feel that way. Like, I’m sure in 10 years I’ll read over my twitter and I’ll be like, “That’s a real… you really were expressing yourself there.” But it’s fine. It gets it out of my head. I get that. And then with people… So in real life, how has it been? I know you’re talking about your real life friends, but you live in a city, are you able to participate in very many things or does that kind of go up and down?
Vanessa: No. I have… oh boy. So when I was at my sickest, all I would do was just work, sleep, work, sleep, work, sleep, make plans, cancel those plans because I needed to work, sleep. And people just didn’t understand it. Or they’d be like, “Oh, I saw that you went to this drag show, but you said that you were sick because you didn’t go to this other thing.” I’m like, “Well, I kind of pick and choose these things.” It just sucks because you get to a point where you have to decide what is important enough to try and show up and try to be there. Yeah.
Brianne: And also to sometimes weigh the ways that different things will affect you. If you’re like, “Well I’d like this thing better, but it starts at nine and this other thing starts at seven and at least then I can show up.” Like there’s different factors. Or knowing about the bathrooms or whatever. Like the food.
Vanessa: Oh totally. Yeah. And the time that things start is for sure a difference. Like a couple of people are like, “Oh yeah, let’s do this thing starting at 10!” Like, yeah, no, I’m ready for bed at 10 o’clock. And it sucks because I’m only 32 and I want to do all these cool and fun things and do shit that everybody else is doing. But my body will literally shut down if I stay up past a certain amount of time. Like we stayed up til midnight watching Ozark last night and this morning I was like, “Why did I do that? I’m so nauseous!”
Brianne: Yeah, that was wild! I definitely fight that impulse. And even at home… my husband wanted to rewatch Game of Thrones from the beginning before the new season comes out. So we’ve been watching it and I hadn’t actually seen all of it, I gave up last time, this isn’t relevant. But now I’m sucked in and I’ll be like, “Oh well it’s, 8:30, we could definitely watch one more.” But the truth is if I stay in front of the TV that long, I’ll feel like crap. But then sometimes I’m like, “Well, I want to do it anyway because I deserve to enjoy this extra hour!”
Vanessa: I need this!
Brianne: That I’ll pay for later! Like your brain tricks you sometimes into feeling like you’re treating yourself, but actually…
Vanessa: I know, but you’re not!
Brianne: We live in a small town now. We moved here after a lot of my stuff and one of the best things about it is that nothing happens after nine.
Vanessa: Nice.
Brianne: Like, we didn’t go because I was not feeling well, but there was a comedy open mic like two weeks ago that was at seven. Like, nobody ever does comedy at seven because everybody is too sober to enjoy an open mic night. But even that can happen that early. So it’s a real… It’s exciting.
Vanessa: Yeah. Yeah. I mean I don’t really go to a lot of live shows anymore. That used to be my life. Like we used to go to concerts and shows all the time and see live bands, but the lights are just too bright for me. Even if I close my eyes or wear sunglasses inside, like I don’t care, I’ll be that weirdo wearing sunglasses.
Brianne: If it works.
Vanessa: If it works, it works, you know? And then people are like, “Oh, are you drunk?!” Like, yep, sure. That’s it. Or like, “Oh, you’re hungover!” I’m like, “Uh huh. I’m hungover.” [laughs] But when I first started taking the prednisone and pentasa, I was like, “I’m on top of the world!” Just hanging out, going to shows, hanging out with friends, doing stuff, doing extra stuff at work. And then it finally crashed. And I was like, “Oh no, what am I doing?”
Brianne: I didn’t really have that energy.
Vanessa: Yeah. Nope. But it really just goes back to finding your limits and realizing your limits and then just understanding that it’s okay to have limits.
Brianne: Yeah. And that’s hard. It just is. I think we’ve covered all of my things.
Vanessa: Yeah, I think so too. I don’t think I can remember anything because of my poo brain.
Brianne: I get it. I get it, there are days. But thank you so much for talking to me!
Vanessa: Of course. Thanks for wanting to talk to me!
[guitar riff]
Thank you for listening to episode 27 of No End In Sight!
You can find Vanessa on instagram @sweetmannered, you can find this show on instagram @no.end.in.sight.pod, and you can find me on both instagram and twitter @bennessb.
This week on twitter I asked people about how long it took them to get a formal diagnosis after they first suspected that something was really wrong with their bodies, and I’ve been getting so many answers that I encourage you to check out if you like the stories on this show. I’ve been retweeting them with #DaysToDiagnosis, so you can check them out that way or scroll back a bit in my feed.
I’ve got many more stories to share with you, so make sure you subscribe on itunes or stitcher or wherever you get your podcasts. And if you’ve been enjoying the show, I would be so grateful if you could share a review on iTunes so that other people know what to expect.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And finally:
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. One of these days I’m going to get to work on some spring and summer patterns. I’d love it if you checked us out at digitalartisanal.com.