Episode 26 – POTS Diaries with Keeya from MN

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:29 Jill (Standing Up to POTS): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook, and today we are speaking with a patient and advocate who is raising awareness of dysautonomia, mast cell activation syndrome, and Ehlers Danlos Syndrome with her professional expertise as a lobbyist, her two talented poodles, and a lot of humor. Keeya Steele is the patient behind ‘Hells Bells and Mast Cells’ which includes a blog, videos, and photos on various social media accounts. She shares information and her own experiences, which have gotten pretty harrowing at times. Most recently, she overcame her symptoms and won a nationally televised competition, and then she got ESPN to do a piece about dysautonomia and mast cell activation syndrome with footage of a tilt table test and everything and her story only gets more exciting from there. So Keeya, thank you for speaking with us today.

01:29 Keeya (Guest): Thank you for having me.

01:31 Jill (Standing Up to POTS): So, let's start with some basics about you. What's your age? Where do you live? What is your day job?

01:38 Keeya (Guest): So, I live in Minneapolis, MN and I live with my 2 toy poodles who are quite familiar with social media and, as you talked about going to nationals in Tulsa. I was laughing really hard because I was really excited for this podcast and I got a new microphone and I'm like really into audio quality now. And when I was chronically ill, I couldn't exercise my dogs in the summer. It was too hot with dysautonomia. And so I would, every summer, once in a while I would let in a single fly into my condo to help exercise my dogs and just last night, I let a single fly into my condo just to like, you know, make them happy and stuff. Well, I sat down to record this podcast and that fly came out of nowhere, and so the last five minutes I've been running around, chasing a fly – Sancho's exercise fly. So, they keep me busy. They bring a lot of humor to my life. They're great companions. I work full time in government relations, lobbying for state funding for a research university, and in my free time, I like to talk about mast cells.

02:45 Jill (Standing Up to POTS): Your fly tip is the most creative chronic illness tip I have ever heard. What a way to exercise your dogs. OK, this is great. Let's keep it going. How would your friends or family describe your personality?

3:00 Keeya (Guest): Well, I asked them this 'cause I just I didn't want to misconstrue my personality. One of the things they said was honest so off the bat I'm good there. Also very strong willed and those two qualities will get you into trouble sometimes. But I deliver those truth bombs with some humor, and they say I'm quite smart. So I think they keep me alive for that reason.

03:24 Jill (Standing Up to POTS): [Laughs] Now normally I would ask what your life was like before you had any signs or symptoms of any health issues, but I think you were so young that you couldn't have any memory of time before that. Do you mind telling us about your earliest signs of any health issues?

03:44 Keeya (Guest): Yeah, so I was diagnosed with mast cell activation syndrome at 29 and by that time, you know, I was so disabled, like crawling around my condo and in so much pain. And if you asked me that question, I would have said, well, you know, in my early 20s I had gastrointestinal pain. Food became really difficult and then I started having like the dizziness and all those very severe complications. And then as I learned about mast cell activation syndrome and learned how complex and how it can affect any part of your body, I was like, wait a second. Like, I had allergies in 4th grade. I had asthma. I could never get my breathing really under control. I had issues with hormones in my teenage years and depression and anxiety. And then recently, I dug a bit deeper. I looked into my baby book and I don't know about other people’s babies book, but usually it's like cute photos, like grandma and grandpa's wishes, and little cuts of hair. And mine has my ferritin levels in it. It has recommendations for orthopedists, and so I realized I had interstitial cystitis starting at age 3. And I dug up my urology records just from elementary school, and it's more than an inch thick, so I had like over 100 supposed UTIs [Transcriber’s note: A UTI is a urinary tract infection], but it really was just inflammation of the urinary tract from mast cell activation syndrome. They could never like figure out what was going on, they were sterile infections, which means, like you know, the bacteria wasn't there. So it's been mind-blowing because, I asked my mom, I was born with strep. So, we know that infections, physical stress, emotional stress, toxins, chemicals, can trigger the mast cells and I came out with an infection when I was born, so it's no surprise that this has been building up over years.

05:42 Jill (Standing Up to POTS): Then what was your childhood like? Like, what kind of kid were you? Was your health a major factor then?

05:50 Keeya (Guest): I think in some ways ignorance was bliss and I just tried my hardest. I guess I'm strong willed and just thought a lot of times as a child, as many patients do like, “I'm not trying hard enough. Oh, it's all a mental game,” and I still competed in track and field even starting in 4th grade with asthma. It was funny 'cause sometimes after running for a while I would feel better. And now I know that histamine dumps and you can deplete your, like, your mast cell chemicals and after a certain amount of time you can experience a little bit of a relief. But I struggled in school. I was very smart and then I would hit these walls and especially like getting into middle school. When it came to the springtime, my parents and teachers thought I was having a lot of anxiety around the end of the year, especially like finals or big tests and what I believe was really happening was spring allergies were hitting. And we would joke - it was scary at first, but my brother and I would experience hemiplegic migraines where we would lose half of our vision. We would become numb halfway through halfway down our body we would have trouble lifting our arms. It was kind of like a stroke-like migraine. And then it just became a joke because we didn't know what was going on and you kind of have to laugh off that your 4th grader and your second grader are like having these weird reactions that no one can explain. But when I look back at it, every time I had, I went to the emergency room for those stroke-like migraines, we had had like a party outside for school in the spring. So, and then also my urinary tract infections stopped abruptly when I started Claritin for seasonal allergies. So there's a lot of gold in my medical record about mast cell disease, and it has given me a lot of validation. I don't want anyone to suffer more than they have to from these diseases, but especially children who don't understand what they're going through and might internalize those symptoms or their abilities. That's just so heartbreaking.

08:04 Jill (Standing Up to POTS): Yeah, that's a good point, and that resonates with me. Like it's so easy to blame yourself for so many shortcomings for so long. For you - when did things start to get serious enough that you were like, OK, I can't just laugh this off anymore. Like when did it get debilitating?

08:22 Keeya (Guest): Yeah, when I was 29 years old I believe I ran for City Council. I work in politics, that's what I do. I was chair of the Park Board at the time. I had built my reputation as a strategic planner in the community and that was what I had dreamed of for a very long time. I worked at the state Capitol at the Senate and when I was campaigning, I could not push my body to do what I knew I needed to do to win. You know, that includes door knocking - 10s of thousands of houses, going to events. I remember, like, shaking at events and like, you know when you get like hot and then cold and then you feel like you're gonna throw up and your body just starts revolting and I blamed myself. I blamed anxiety. I started to question if I was strong enough to be a leader, if I even deserved to run. And I hate remembering that. I hate that I did that to myself, but I was not elected. And I tried to rest and do self care, a lot of yoga afterwards, which didn't turn out to be my friend. And then in January I was having a lot of muscle pain and at work on a marble staircase I fell down the staircase. And I was like, well, I've been having a lot of GI pain. Maybe I just like don't have the right nutrients. Maybe it's a vitamin deficiency, and my rheumatoid factor was through the roof. And that's kind of what started like digging into like well what's going on. I went to rheumatology, gastroenterology, endocrinology, all the "-ologies”. My Christmas card literally was "ology”. And I got worse. Dysautonomia kicked in. I started struggling to get to my car in the morning 'cause I was so dizzy and I couldn't figure out how to get from my condo to the car. But once I was sitting down, I was fine. So you know just those little things. And it wasn't until December of 2015. So, January 2015, I fall down the stairs. My body starts falling apart. I'm throwing up I'm dizzy, I'm on the floor. Weird things start happening I'm like well Crohn's disease doesn't cause your throat to swell shut, does it? I don't know, like very confusing. Until I started flushing in about October of 2015 and I was like, oh, this is looking like an allergic reaction. My gastroenterologist passed me off to Dr. Afrin who happened to be at the University of Minnesota where I work. So I was very lucky to be able to do mast cell testing. Five positives, no problem for me. I remember testing and like just wishing they would leave me on the floor because I was - I felt so terrible, but I considered myself very lucky that I was able to be tested and received the basic treatment right away. And then continue to work with Dr. Afrin to address those different chemicals that mast cells release.

11:21 Jill (Standing Up to POTS): Yeah. So, for anybody listening who's not aware, Dr. Larry Afrin is like one of the very very VERY top mast cell experts in the whole world. So it was lucky that he happened to be right there at your university at the time. Gosh, now that you have all this knowledge and presumably you've dialed in some things, what were the worst symptoms that you had to still live with after that?

11:45 Keeya (Guest): Yeah, once you start treatment it doesn't disappear right away. Treating mast cell disease is very hard because it's so individual and so the doctor can't say, “Oh, these are the three treatments that mast cell patients benefit from.” No, you have to try everything. And because mast cells react to things in the environment and kind of overreact and view chemicals as threats sometimes, sometimes the medication you're given can make you very ill and send you to the emergency room, but you don't know until you try it. So there were like three years of trial and error that were pretty violent. My worst symptoms were like waking up. So your mast cells have a circadian rhythm and one of the telltale signs is waking up at 2:00 AM and you're hot and you're covered in hives and your intestines are squeezing you like it's gonna crush you. I remember like needing to go to the bathroom and just wishing I would blackout because I was in so much pain. And it's terrifying because I live alone and, like, not knowing if you're going to lose consciousness and what that's going to look like. Of course, having your throat swell shut, you start - you have to learn when you need to ask for help. And it's scary to learn that and always err on the side of going to the emergency room. But you have to learn what medications you can use as rescue medications and when you actually need emergency care. And then the psychological effects of mast cell disease are horrendous, because when your brain is inflamed you can lose the ability to make good decisions. So not only are you an allergic reaction where you need to make the correct decisions for your safety, but in a lot of cases it instigates a sense of doom and you feel like you're dying, even though like nothing has changed around you. You could even not even have rashes and you can have the sense of doom like something is really wrong, something bad is going to happen, and then you start to feel so overwhelmed by that doom that you're like, Oh, I just, I don't want to be here. You have to train yourself to reach out to someone or to get help. I have – Sancho's trained as a service dog and he interrupts those reactions. He comes to my face. He slaps me in the face when I start crying and I start experiencing that anxiety. And then I say, “Hey, stop it,” and he slaps me in the face again. And then I go get my medication because that is our routine and it has saved me many times because I live alone, and I know like once I am, you know, kind of slapped out of that doom cycle, I get the medication and think, “Oh I should tell someone I'm going through this right now,” and sometimes I do need to go to the emergency room and I need that IV of steroids to get out of that, that cycle. But and knowing that those feelings aren't real, you know, you can tell someone that, but it's very hard when your brain is inflamed because the brain is not functioning correctly anymore.

14:49 Jill (Standing Up to POTS): Yeah wow, this is so much for you to take on, especially as someone who lives alone. And is that part of what made you decide to start your blog, or how - how did Hells Bells and Mast Cells come to be out of all this struggle?

15:08 Keeya (Guest): So, I was diagnosed in December 2015 and I believe in like January of 2016 I was like, “Oh, I'm diagnosed. I'm gonna be fixed.” Haha. [Laughs] And I'm going to go on vacation and celebrate. Probably don't do that in your first month of mast cell disease diagnosis. I'm not trying to rain on anyone’s vacation, but I caught a virus and that sent my mast cells into a huge spiral and it hit me just as I arrived by myself at the hotel with Sancho. He was an emotional support animal at the time luckily, and I had a slow what they call a slow leak where the mast cells are like dripping all those chemicals into your body and they're building in their building, to the point that I was like all the fluids were leaving my body, it was completely disgusting and I'm so sorry to that hotel staff. But I was so confused and felt such anxiety and I was freezing. I got into the bathtub with my clothes on and was just like, OK, whatever happens, happens. Luckily Sancho was there and he started crying. And I was like, oh, I can't leave this dog. Like, that is what pulled me out of that severe mast cell reaction, and I called someone - EMT was there and went to the hospital and they didn't know like what I needed. They put Benadryl in right away. My liver was shutting down and I just kind of had that life-or-death moment and, in that moment I was like, “I enjoy writing. But I actually haven't written anything. I should start writing about this experience,” and I was like, well, if I live, I gotta start a blog then. And so I I took that very - I take my life and death experiences very seriously [Laughs] And, you know, I started the blog and it wasn't funny. It wasn't funny at all. It was very sad, it was a vent, it was painful. And then those little bits of humor started creeping in and I started enjoying it more. But also other people started enjoying it more and they started taking interest in my story, they started learning about mast cell disease, and the more that I looked for that humor and, like, mast cell disease is completely ridiculous. It is so complex and it's ironic there's a joke in just about every hour of mast cell disease. So, I started looking for it and realizing that that humor could help serve not only other people, but help me feel better and, you know, inspiration doesn't always like kick me in the butt to keep going, but humor can kind of encourage me along the way.

17:46 Jill (Standing Up to POTS): So do you mind if I read a little passage from your blog that helped me?

17:51 Keeya (Guest): Absolutely go for it.

17:53 Jill (Standing Up to POTS): [reading from Keeya’s blog] “So the main reason I created this blog was because my Facebook friends couldn't handle my oversharing. Turns out everyone wants to be your Facebook friend until you post something boring, frightening, or disgusting. Well, I'm not boring! “Chronic illness has increased what I like to call my generous honesty. Life is too short for small talk and I left all my shame in an ambulance in Florida. I have never sugarcoated my illness and if you ask me what I did last weekend, I'm going to tell you which body part broke. “I share my experiences on social media for many reasons. One, I live in solitary confinement and poodles are bad listeners. Two, sometimes I need validation that my disease is total shizer and I'm a badass. Three, therapy is expensive, and my last therapist quit the profession, which is way more insulting than being unfriended on Facebook. “But most importantly, my posts help people. Yes, my stories are terrifying and sometimes disgusting, but everyone has a body that is probably going to do some scary shizer before inevitably falling apart. “I feel a duty to normalize illness and disability because for every 10 people who unfriend me, one person privately messages me and thanks me for sharing my experience.” So, that helped me because I had been worrying about how much of myself and my health issues to share publicly. And even like with this podcast, you know, doing it a lot of things come out and it's easy to think, “Oh, people don't want to hear that. It's not really that appropriate,” but I think you're so right that if there's one person out there - I always think of people lying awake at night in pain because that's when I used to listen to podcasts. And I always think about how if there's one person out there right now getting something out of this, if it's making that long, painful night even 5% easier, then I don't care if 100 other people are thinking, “why is she doing that? That's so lame.” And it helped me to read it in your blog and I imagine, I imagine that as more people find you, your ratio gets better right? More and more people are thanking you for your blog and fewer and fewer people are unfriending you?

20:02 Keeya (Guest): There will always be people who criticize you and, you know, I wanted to run for office, be elected, and so you think about your image all the time and it was like exhausting and there's no way to have like a perfect image. So why not have an authentic image? And I know that I can help people by talking about pain and suffering and isolation and sharing the tips that helped me get through life. So I'm kind of over the, like, polished political imagery and I'm having fun. Like, I remember I was sick, I had just had my gallbladder removed and I had Sancho with me and he was on the floor, and I couldn't figure out how to get him on the hospital bed because he's an 8-pound toy poodle. He's not one of your service dogs that's gonna go get your iPhone for you. Like, no, and I like I was so confused and I put on Facebook, I was like, “Oh, Sancho’s stuck on the ground,” and they're like, “Get a stool for him!” Like, it is my community and I love the mast cell disease and dysautonomia and EDS communities because if I don't have a joke that day, someone else does, and someone else can make me laugh. And so that is how you find people that will help build your resilience and give you tips to survive.

21:42 Jill (Standing Up to POTS): That’s fantastic. Can I ask about another of your blog posts that describes how you became allergic to your own hormones? Do you mind sharing about that?

21:54 Keeya (Guest): Yeah. So, one of the areas of my life that I was always ashamed of was that when I started getting my periods I would have these bouts of severe anxiety, depression, and lethargy that no one seemed to make sense of. And my mom would take me to all these specialists, psychologists, therapists, and when I had these reactions, I'd feel like that sense of doom. I would feel suicidal, I just had this overwhelming sense that I had so much mental pain about nothing. Nothing had changed in my life. Nothing had happened at school. I mean those were the questions I was asked like, “Well, like did a boy say something mean in school?” Like, no! Like, and they would you know, they would ask all these questions and I couldn't tell him what it was, but this overwhelming doom was so strong that I just didn't want to exist anymore. And and then it all of a sudden it would go away. It would just leave and what I realized is that yeah, it was when I was ovulating. And then my period would start and it would disappear. And it was once I understood that schedule, then it was very helpful but also didn't alleviate the symptoms. Just because I knew what was going to happen, it didn't make it any better. I told my friends and family, I'm going to feel this way. I need help. And it's terrifying for friends and family when you're having such strong thoughts that you don't want to exist anymore and there isn't a whole lot they can say or do to alleviate that pain. So that was a very hard time in my life. But then, you know, like my period would start and I would crush school. I would just compensate for that week that I was down and out and hope that that week wasn't like during finals or some big events. And I think in my late teens, premenstrual dysphoric disorder started becoming more known and I understood that was what I was suffering from is that, again, ovulation was causing these reactions that they didn't really understand how it was working with people’s bodies, but that it could cause these overwhelming feelings, even though the person physically was functioning fine. And then when I was diagnosed with mast cell activation syndrome and Dr. Afrin was taking my history, I said - he asked if I had issues with anxiety, depression - and I said I had premenstrual dysphoric disorder, I had had suicidal thoughts often with it, and he did not blink. Because that is very common with mast cell activation syndrome. Again, those chemicals are released out throughout your entire body, which includes the brain. And when your brain is inflamed, doom happens. And for me I was able to find a birth control or a hormone pill - I like to call them hormone pills because each brand has different amounts and types of hormones that I take continuously so I don't ovulate because my I can't handle it. It is one of the worst symptoms. It shuts down my entire life and I would take kidney stones over that kind of pain. I can't describe - I mean, I know a lot of people have experienced it and that is terrible, but to describe it to someone who has not experienced it is pretty difficult. So, it's very interesting, I think, in the PMDD communities, when we would talk about treatments, it was interesting that everyone had different success with treatments and that is characteristic of mast cell activation syndrome - every individual patient is different and our bodies view different things as treatments versus threats.

25:42 Jill (Standing Up to POTS): Man, and so you have just been through so much hell. But I'm excited now to ask you now about your recent victory at a national championship. Can you tell us about you and your dogs and what you guys have been up to?

26:00 Keeya (Guest): Yeah, so when I was getting sick I had just started training Quixote in dog agility, so that's competitions where they have jumps, tunnels, and teeter totters, and you follow a certain course for time. And he's always been my athlete. He’s competitive and like likes a high drive dog, loves food, and he enjoyed it so much. He stopped barking at me at night when I was reading and took to training. But I started getting like very sick to the point that I couldn't lift my arm up not even to my shoulder to point him where to go. I literally became allergic to exercise. I was having trouble with air hunger. I was dizzy. There are certain turns I couldn't do, and luckily, I had a specialist who encouraged me to continue with the sport if it made me feel happy in the long run. Because it's not just our physical health but also our mental health. And I noticed that as I continued with it, you know, I ran for about one minute and I felt better afterwards. I felt like it was a reset for my body. I think it's also important to know I have hyperadrenergic response, so I think that kind of like helped me get through it. I was wondering why, like, I didn't faint like some of my other mast cell disease friends. So I never had issues with that. But it helped with that like buzzing wired feeling and I felt a lot better afterwards. And I didn't have that kind of experience, like I couldn't run for a minute around my building with that kind of adrenaline 'cause there was no time clock and like people cheering you on. So, anyway, for the past five years we've been competing and like it's a challenge. And, uhm, some weekends were better than others, but in the past year he qualified for nationals and it was very exciting. And I was put on fludrocortisone. [Transcriber’s note: Fludrocortisone is the generic name for Florinef, a corticosteroid often prescribed for POTS]. I did the tilt table test last summer and finally was like tested for dysautonomia, which I think I had experienced for at least - at least five years. I did the tilt table test and all of a sudden I could connect that terrible, horrible feeling, I know everyone gets a different flavor of feeling, but with like my daily life, like the heaviness of like being crushed through the floor and not feeling your legs, I'm like, oh, that feels like last weekend for sure. So, I got fludrorcortisone and it actually lowered my blood pressure, which surprised me because I guess my body wasn't trying to overcompensate anymore, and I felt confident enough to go to nationals because I had blood flow, and honestly, because of the pandemic, there were no spectators. There was social distancing. People had to wear masks. I would have had to wear a mask anyway because of mast cell activation syndrome. And it was the safest environment that I could have been provided as a competitor. I also had disability accommodations that allowed me to be close to the ring and have a chair next to the ring so that after my runs I get really bad tremors and I have trouble breathing. And it was a wonderful experience. Like, I came in and I had a great run the first day and then I slowly fell apart and my dog - my 11 year old dog - slowly fell apart, too. And that was not the point the point wasn't to like, you know, get first place I, but it was to go out there confidently and enjoy myself and do the best that I could, both athletically and also, just like as a dog owner, to have fun with my dog. Like, I made sweatshirts, I sent little photos of Quixote to all my friends and family to make videos, I made videos of all my runs. Like you can do so much more than just focus on the competition, and I will always cherish those memories. I have these videos and he hardly just had a great time. I mean, he was – like, his tongue was hanging out his mouth the whole time and he wanted to play and so it was very rewarding, and I am so glad that I went.

30:06 Jill (Standing Up to POTS): So how did you get ESPN to explain what mast cell activation and dysautonomia were? I was so amazed! And then they came up with the footage of the tilt table test I was like, “Oh, how did she do that?”

30:18 Keeya (Guest): So I had been videoing my experience for the past year and I suddenly felt confident to do videos. Like, it's really about sharing your story. It really takes like one person to, like, “Oh, why don't, why don't you do this? Why don't why don't you write this down? Or why don't you make a TikTok video?” And I started feeling more confident and I had been blogging for five years. I had been sharing my story for five years. So, I pitched my local newspaper who had written a story about me - I want to say two or three years ago – my condo became unsafe because my neighbor installed a ventless dryer, and so the fumes were going straight into my condo. I didn't have any money left from medical bills to make any improvements or buy air filters, and so I had to do the GoFundMe. I was sleeping on my office floor. Like, I have been through the hard times and had to advocate through that. So they did a wonderful story talking about mast cell activation syndrome and helped me to raise money, so I pitched them a happy story about a dog. Who doesn't love a puppy story? And then I shared with AKC who puts on the event, like thank you for providing these disabilities accommodations for you - for me. I am also sharing my story with my local newspaper and just really appreciate the support. I think they sent it to ESPN and suddenly I was running around being like, “I am an ESPN athlete!” And like nothing is more exciting than someone who has been diagnosed with an allergy to exercise, who has dysautonomia, to be on ESPN. I mean, that is absolutely thrilling. And because I had been telling my own story, because I had been making those videos, they used my footage. And I think that is one of the most rewarding things as a disabled or chronically ill patient is to be able to accurately tell your own story from your perspective, because it's really easy to get it wrong, especially when you're talking about abilities and the way people want to identify. So it was great to see that tilt table on ESPN and I am just so proud and I just hope that other patients feel that confidence. Like, go out there and try it. Literally nothing to lose by, like, pitching your story and making videos, writing. It can be, you know, paintings, creative. Enjoying yourself.

32:54 Jill (Standing Up to POTS): I thought that was as exciting as your story could get until I heard what happened next. You had quite a scare and then quite a surprise. Can you tell us about that?

33:11 Keeya (Guest): Yeah. So, I thought like ESPN was the peak of my life. [Laughs] Never, never think that. Never think your peak is over. And I went home. I watched ESPN and I was like, “OK I am satisfied with life.” And then a week later, my ankle starts itching. And I looked down and there is a big fat tick in my ankle. And I scream and like have a panic attack. It's so fat that it just rolls off my ankle. Like, absolutely terrifying. I took a picture of it, and it was identified by a university as a Lone Star tick which we do not have in Minnesota. So, I call it my little hitchhiker. It must have hitchhiked and spent a week in my condo. So, these are the things of nightmares. And in that moment, I had like a panic attack because you hear horrible things about tick borne illnesses. Again, infections can trigger mast cell activation syndrome. I had worked really hard to improve my baseline. I had done all these treatments, spent this money. You know, mast cell patients literally make strategic decisions every hour to try to improve their health. It is a ton of work and I thought all of that was going to be destroyed by this single tick, and like really wreck what all the joy that I had had at nationals. And within 24 hours I had a fever, I had lesions all over my body, and then my Achilles tendon started being affected. And because I have EDS, I was very concerned that they might rupture. It got so painful that I couldn't even have like a sheet over my ankle without crying. And I started doxycycline, an antibiotic for tick borne illnesses, right away. And for about a week or two weeks, I'm blanking - I'm probably blacking out that time right now - I couldn't walk and I was literally crawling around my condo. I was crawling to the bathroom 'cause I could not use my ankles. I was crawling to get food, and I thought, you know, this - that was my peak. That was it. ESPN athlete’s crawling around and then it got better and I could walk. And I went to a hair appointment, 'cause that's what one does when one starts to walk again [Laughs] and hair appointments are very difficult with mast cell activation syndrome. I try to avoid them and only do them maybe twice a year because there are tons of fragrances in hair salons and I had noticed, like, Oh my stomach doesn't feel like in pain anymore like the rest of my body feels pretty good. Like my ankles are still sore, but I feel good. And my hairdresser did my hair and I was like, “I think I'm not - I'm not reacting. I don't feel like vomiting right now. Like, maybe I'm in remission.” And she's like, “Well, do you want me to style your hair?” And I was like, “Let's try it.” I haven't had my hair styled in five years. I haven't had product - I bring my own shampoo and conditioner into the hair salon when I have to go get my haircut, and she styled it and I was like, “It smells like orange creamsicles.” Like, mast cell patients often smell like chemicals, like not the actual beautiful things that normal people smell, but the like the death. That's what we pull out, our nose pulls out, our immune system is like, what is the threat? And it’s like, orange creamsicles. And uhm, then I called my mom and she picked me up and brought me to the bar and we ordered a bunch of food, and I was fine. I had alcohol. I was around other people. I couldn't smell things and it just kept escalating. So like, that was Wednesday. My 35th birthday was Friday, and I became like a diva because I was like, “I want candles on my cake. I want two cakes. I want flowers. I want people at my birthday party.” Like, I had spent my birthday alone for the past five years. And even say, like if someone came over, and they were completely scent-free, it was so exhausting and painful that I couldn't enjoy the day. So it was easier for me to be by myself, on my couch watching TV, you know, on my computer, text messaging. But like, no, I went big for this birthday and I had 35 candles and it was completely ridiculous and my face got like exploded with smoke. But it was wonderful. And then two days later I booked a trip to Florida and I left because I didn't know how long remission would last and it was clear that like, everything was going well so I wanted to go to the ocean and for the first time I could sit in the sunshine and the heat and the humidity and it was no problem. So, I for a week I swam in the ocean. I jumped in a pool full of chlorine. I ate a sandwich bigger than my hat. I had a few cocktails. Like, it was heaven to me, and everything brought me joy. When I showed up at the hotel, the concierge handed me a bottle of water. Now that sounds pretty basic to most people. I have not been able to drink other types of water for the past five years. I could take that bottle of water and drink it. When I got that sandwich that was bigger than my face, I put it in the refrigerator, and I ate it as leftovers afterwards. You can't do that with mast cell activation syndrome because it builds histamine and will make you feel like you have a demon in your belly otherwise. So, I was like thrilled to be eating a day-old sandwich on vacation and I had a wonderful time. And since then, it's just like every day I go on a different adventure. I've been hiking, running, I mean, kayaking, paddleboarding. I love being outdoors. Again, I was a Park Board chair – like, Park and Rec is in my blood. But just the simplest things bring me joy because I have come from such a place of gratitude of knowing what it's like to not be able to lift your head off of the pillow on your bed without throwing up. So, I'm just completely elated right now.

39:49 Jill (Standing Up to POTS): So, it is so fun to watch your blog show the joy that you are finding in remission, but I just have to laugh because some people are probably listening to this, knowing that doxycycline can sometimes help mast cells, but other people are probably listening thinking that tick bite was like your Spiderman moment, and that's what put you in remission. And so just to clarify, you think it's the doxycycline, right?

40:15 Keeya (Guest): It's the doxycycline I like to tell people that I'm going to join The Avengers. So, uhm just watch out for my my action debut. Move over ESPN! But it's the doxycycline because, you know, you want to be on the lowest dose possible of any medication while inhibiting your symptoms and I went down to 50 milligrams and I started experiencing symptoms pretty quickly. So I'm on 100 milligrams every day and, you know, things can change. My mast cells can become more reactive, but right now my gut is healing. I have been able to come off the fludrocortisone. I do not have symptoms of dysautonomia. I had to reduce my salt intake because it was making me incredibly sick. So that is hilarious. And it's very fun to, you know, be in summertime and to enjoy all the things. I used to have to sit in my condo with the shades drawn and I would pretend that I was in a blizzard in order to cope emotionally with summertime.

41:26 Jill (Standing Up to POTS): Wow, oh, we're so happy that you're getting to experience some joy and some of these simple things. Wow. All the humor in your blog is something that we all love and it's really striking about how you're able to write about some of these really serious issues with a lot of humor. How much does that come naturally? How much is in the moment? How much do you work to find humor afterwards? How does the humor find its way into all these serious problems?

41:59 Keeya (Guest): I think I'm definitely like that five year old kid that, like, tells a joke and then gets attention and it's like, “Oh, I'm going to do that again!” Because when I started my blog it was like I'm venting, venting, venting, no one clicking on my blog. I'm really sad. No one understands. And then I tell a joke and it's like, oh that's funny. Like OK, I'll do it again. But I believe it - I believe that humor is a muscle and that the more that you look for it, the more humor you find in things, to the point that I walk around my condo laughing at myself because I think I'm so funny and I try to only pull out the gold jokes and share those publicly because, let's be honest, they're not all that funny, and some of them are probably quite weird. So, but whatever, like, gets you through those terrible moments. Like, you know, I'm in remission and I want to tell people that like to have hope. But that's not really realistic sometimes. Like, that's very hard when you're in a lot of pain. Pain changes the way that you think, but I feel that humor is a little more relatable, little more attainable when you're in that pain, because you can be that morbid, dry, like, sarcastic person. And like I remember I came out of surgery and I feel really good after surgery because I - my mast cells are usually taken care of. My mast cells are busy fighting whatever slices and dices the surgeon did to me and I'm on steroids and pain medication. And so like, my friend brought me home and I was like, I'm going to make her lunch. Like, that's what every person after surgery says, and she's like, OK, whatever. I'm going to let this girl do whatever she wants. And she's tired from my surgery. And she's like going to the bathroom and every time she like went to the bathroom or went in another room, I changed my outfit. And I just like, gave her the willies after a while, but it's like you gotta look for those absurd moments. Like it's OK if people think you're weird. It's OK, like, I will laugh at your jokes. And also it's a very good tool for educating people. Mast cell disease is incredibly complex and boring and I think I deserve a medical degree by now. But telling jokes helps other people understand in a very palatable way.

44:30 Jill (Standing Up to POTS): That's so great. If people want more of this combination of humor and education, where can they find you online?

44:41 Keeya (Guest): I have a blog at HellsBellsandMast cells.com and then my handle is @Hellsbellsandmastcells at Instagram and Facebook and I think my Twitter is HBmastcells. I'm everywhere and I'd love to connect and laugh with you.

45:04 Jill (Standing Up to POTS): That's awesome. Keeya, thank you for sharing your story and insights with so much openness. And I have personally gotten a lot out of your blog posts over the years, your approach to raising awareness with humor is something I really admire. So thank you for all that you do. Good luck with agility competitions and remission and we hope things just keep getting better.

45:31 Keeya (guest): Thank you.

45:32 Jill (Standing Up to POTS): And hey, listeners, remember this is not medical advice. Consult your health care team about what's right for you, because we're all so different. But thank you for tuning in. Remember, you're not alone. And please join us again soon.

45:49 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast, and I would add, if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2021 Standing Up to POTS. All rights reserved. [Transcriber’s note: If you would like a copy of this transcript or the transcript for any other episode of the POTScast, please send an email to volunteer@standinguptopts.org]