Teona Studemire talks EDS, M.E., and public benefit programs.
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Brianne: I’m Brianne Benness. And this is No End in Sight. A podcast about life with chronic illness.
Drew: Hey, this is associate producer, Drew Maar. Before we get started, we wanted to remind you that no end in sight has a newsletter. It’s full of updates about Twitter conversations happening in our hashtag #NEISVoid, book and article recommendations about chronic illness and disability, and links to new podcast episodes and miscellaneous other media. If you are comfortably able to support our work. There are paid options available, but all core content will be free. You can take a look previous newsletters and subscribe over at NoEndInSight.substack.com. Today, we’ll be hearing from Teona Studemire about EDS, M.E., and public benefit programs. A few content notes for this episode: Teona mentions misuse of Lyrica at around minute 27, she mentions medical cannabis around minute 58, and she talks about a few pain medications an hour and 15 minutes in. Teona and Brianne referred to the pandemic a few times throughout the episode, but the bulk of the discussion about it happens about an hour into the interview. Before we start, here’s our 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.
Brianne: Okay. So I like to start just by asking people, how was your health as a kid?
Teona: Honestly, that one’s kind of hard because looking back… as an adult, looking at me as a child, I can see where there was a lot of things wrong, but as a child I didn’t notice any of it. I had a lot of really weird symptoms going on, and I was a premature child, so I was a whole trimester early. So I spent the first couple of weeks of my life in the NICU, and I didn’t go home until after… I’m pretty sure it was about a month or so after I was born. But I have a child, there was a lot of things going on. I experienced severe nose bleeds, all the time, and I completely omitted it from my memory. My mom and my dad have forgotten about it, but I vividly remember one day I was walking out of my room, and I just had this really bad nosebleed. And I was like, ” not sure what to do about this.”
Brianne: “Is this supposed to happen?”
Teona: “I’m not sure… is this the coming of Christ? Is it… am I dying? Is my body just weird?” And then I just would go on about life, not even thinking about it. But now as an adult, I’m like, “You were tired more than a normal child probably should have been. You didn’t do a lot.” I can definitely tell that my health was pretty rocky, but it’s definitely worse now of course, because everything’s more severe, but I was not healthy. I was not at the normal level that all the other kids around me were because nobody else dealt with severe nose bleeds and sleep apnea. I had really bad sleep apnea as a baby. To the point where my mom used to joke because… I had my adenoids removed when I was one year old. I snored… so… you could basically shake the house with how loud I snored, but it was good because when my sleep apnea arose… when that was a thing, if I stopped breathing everyone in the house knew because I stopped snoring. I snored the entire time I was asleep. But they removed my adenoids to 1.) Help with the snoring and 2.) Help with sleep apnea. I still have very, very mild sleep apnea. It’s nowhere near the way it was when I was a child, but it’s something that still carried over even after getting the surgery that helped with it. But that was the biggest thing I remember as a child, and I don’t recall if that was the result of being a premature child or what. I just… my mom used to tell me that that’s how things were when I was a baby. Everyone had to be aware when I was asleep because I stopped breathing pretty regularly and several times a night. I don’t know if I ever had to get the machine to sleep with, but I remember that someone always had to be in the room with me, or I would stop breathing.
Brianne: So, like you say, it’s definitely not typical, healthy child stuff, and it sounds like while you were in it, as you got a little bit older or you didn’t really know… you weren’t thinking of it that way.
Brianne: Which I can relate to.
Teona: It seems so normal, and then as an adult, you look at other children. I’m always looking at how children are in the world now because I’m 23. I’m so far away from being a child that I know that I’m in a different place, but I witness children going about their life, happy-go-lucky. And I’m like, “Huh, I don’t think Teona as a child could relate to these children in just the way they’re existing.” And I’m like, “Hmm. I’ll bookmark that to talk to my doctor about eventually.”
Brianne: Right, right. Put that on the list of just like, “Huh. Interesting, interesting stuff.” It’s so weird. Okay. So that was early, so fatigue and then the sleep apnea and your adenoids and the nosebleeds and were… Okay. I never know how to ask about progression, but what happened next for you health-wise? Did it stay kind of stable or were you aware of things changing?
Teona: It kind of stayed stable. When it came to illness things, I got sick often, but it didn’t seem more often than another child got sick. You know, I get sick at the drop of a hat, someone sneezes in a room too close to me and I get sick, but I remember… I didn’t have allergies back then. I didn’t… I seemed like it got “normal,” quote unquote, and then it stopped being illness symptoms. I stopped having nosebleeds, sleep apnea wasn’t something that was hanging over my head all day. No allergies, none of that, and then I started getting pain, and I didn’t connect the dots until later, but essentially when I was in middle school and right before I first got to high school, I started experiencing these random, sharp knee pains in my right knee. But it was so far apart that I constantly forgot about them. By the time I’d go to my pediatrician, I wouldn’t even think of bringing them up. I didn’t talk to my parents about it because I’m just like, “Oh.”
Teona: Shoot, my knee hurts.”
Brianne: Yeah and then…
Teona: Can’t do nothing. I’ll sit down, and then it started climbing. It seemed like the progression in the past four years has been wild cause it… or it has been more than that. Wow. Four years? It’s been about 10 years, but it started out as like sharp pains, you know, every now and then, once in a blue moon, and then just slowly started climbing, and I vividly remember… I was aware of the pain to a degree that I knew that I couldn’t do JROTC when I was in middle school. For some reason I wanted to do that… I think somebody tried to tell me it was going to be good for a scholarship or good for getting… being active or something. And I was like, “Okay I do need to get some activity in. I can’t do any sports, so let’s do that. And then the knee pain started, and I was like, “Huh… it’s probably not a good idea to do a physically taxing extracurricular with my knee being like this. Let me remember to talk to my doctor about it.” Teona doesn’t remember to talk to her doctor about it.
Brianne: Yeah I hear… so it’s in there, you’re making some different choices, but you’re not thinking of yourself as a person who has a knee problem that they need to fix.
Teona: Yeah it seemed like a bother.
Brianne: Yeah, it’s in the back of sort of.
Teona: Yeah, I noticed as I became an adult… I’m doing my adult things, minding my business, doing what… you know, working, being a young adult, 19 years old. And when… let’s see 2017 was three years ago. Okay so 2017 rolls around, and I can’t… whenever my doctors and I talk, we can’t determine if something happened in 2017 or if things stemmed over from birth. It could be both. It could be neither. It could be either/or. But in 2017, everything was good up until the latter portion of the year. I remember having the faint knee pains become slightly more regular, but not regular enough and not painful enough that I’m… you know, it’s becoming a regular thought in my mind. I’m constantly forgetting about it, which honestly I think I should have noticed. Things slip my mind way too often, and that’s not just because I’m neurodivergent but brain fog was hitting me even then.
Brianne: Right, you can see it now.
Teona: Yeah, and so, you know, 2017 I started noticing things, but then 2018 rolls around… mind you, I had a whole full-time job and everything, and I’m uncomfortable standing more than usual. And I noticed I have to shift my weight around because my right knee is just really becoming uncomfortable. Then 2018 hits, I stopped working at that job. I take… I’m unemployed for a good six months cause I couldn’t find another job. And I start my new job, and at the time I worked at a fast food restaurant, and the first month I’m in there, I’m not doing anything too intensive because I’m still learning, but my knee is hurting really bad now.
Brianne: Do you think you’d been ever standing that much before? Cause that’s obviously a really… anything in the service industry, you’re going to be standing all the time. And it’s a rude awakening sometimes. Was for me.
Teona: My very first job in 2015, or 2016 actually. Was it 2015? 2016. Yeah I got out of high school, went into working a year later. So I worked at a Walgreens, so I was on my feet for 8 to 10 hours. And that was normal. Like it was tiring, as tiring as it is for anybody else who has to do that cause they won’t let you sit. So my body hadn’t become used to it. Cause I was doing that there, I did it when I worked at my second job. I was accustomed to it, but for some reason standing just hurt.
Brianne: Yeah, at this point, it was not working anymore.
Teona: And I started… I was noticing. It wasn’t a once in a blue moon kind of deal. It was like, “Okay, once every couple of days. Once every day. Couple times a day.” You know, it’s changing up, and I’m like, “Huh, okay. Got to go to the doctor.” So I go to the doctor. They run a… they do an x-ray and everything, and they’re like, “Nothing’s wrong with you. Here’s some ibuprophen.”
Brianne: “Your knee looks fine.”
Teona: Yeah, “Your knee’s fine. You’re just dramatic.” So I’m like, “Okay, my doctor says nothing’s wrong. Let’s try out the ibuprofen. Maybe it’s just pain and I’m not… you know. Maybe like…” You know, just trusting them that nothing’s wrong. Okay. So I started taking the ibuprofen, and I’m like, “Dog, this ain’t… this isn’t getting easier. It’s getting worse.” So, and I remember… I vividly remember one moment. I was talking to my dad, and, mind you, I lost my insurance right after I first got my x-ray done. I couldn’t go back because I aged out. I turned… this is my 21st birthday? Yeah. 20? I think it was my 21st birthday. I lost my insurance cause I was on my mom’s insurance with… I think we had Medicaid or Medicare or something, and that was the age limit here in Florida. So I couldn’t go to the doctor, so I had to… I remember one day I was sitting there. The pain had gotten so bad that I was genuinely concerned because it was hurting a lot. And I couldn’t… It was really random, where I’d just be… not doing anything, just laying in bed, and it would feel like I’m being stabbed in my knee. And at the same time, my migraines started up, and they’re starting up bad. I’m getting hit with migraines that lasts for weeks at a time. I can’t… I can’t stand sometimes. I can’t walk. Seeing hurt so bad, and I vividly remember I lost my insurance, couldn’t go back to the doctor. I’d been… went up to visit my fiance, back when traveling was a thing.
Brianne: in the old world.
Teona: And I remember one night, we were all getting ready to go out to eat. We were going to go to this Korean barbecue. It was going to be a real fun deal, and I couldn’t… my knee starts hurting really bad, and I get this really bad migraine that was building, but it was just a headache early. I could deal with those, but suddenly I could… I was sitting keeled over, holding my head, and I’m wearing two sunglasses, and I’m underneath covers. And I was like, “I can’t deal.” It feels like something’s stabbing me behind my eyeballs, and I’ve never dealt with this before. Like I’ve never… I had never had a migraine. We all have had headaches every now and then, but a migraine… this was like… I felt like I was legitimately dying.
Brianne: Yeah, it’s next-level.
Teona: It ended up passing and my loved ones are very considerate and They’re like, well, listen, we don’t have to go. we can it’s okay. We just want you to be okay.” I remember my fiance just laid in the bed with me. I was just under a bundle of everything, trying to keep all the light out, waiting for the pain to pass. My knee is hurting so badly that no amount of… where I’m laying is comfortable and I’m like, “I don’t understand, like, I don’t know what’s going on.” I’m so confused because I’ve never experienced this level of pain before, and no one in my family deals with it. My mom gets migraines. We don’t really know where she gets her migraines from. Part of it is possibly caffeine-related cause she drinks so much caffeine that when she doesn’t get it, she gets a migraine. But outside of that, she’s the only person with migraines in my family that I know that has them chronically, like the way I do. I don’t know. I don’t even think hers last as long as mine does, but she’s only person I could think of that has dealt with something similar. But as for the pain part… if anybody in my family dealt with pain, they don’t talk about it. So I go home. And I’m like really sitting here. I’m like, “Okay, what am I going to do?” Because this is the topic… this is that point where, when you don’t have insurance, you have to decide: are you going to go to the emergency room anyway? Because you’re going to get sacked with that bill. And I’m going back and forth. I’m having anxiety attacks because I just became an adult, and I’m about to get… my only option is to go to the emergency room, and regardless of whether or not they give me an answer. I got to get a hospital bill. And I remember talking to my dad and he’s like, “It doesn’t matter. It doesn’t matter.” And I’m just like, “Yes it does! I only… I just got… I got baby credit. This going to plummet me.” And sure enough, they billed me $12,000 just to tell me nothing’s wrong and give me some ibuprofen. And I just… I felt so defeated because no one could understand what was going on, and doctors were treating me like I was just coming in for nothing and wasting their time or I’m just medication-seeking and everything. And they’re looking at me weird because everything’s coming back normal, and I’m like, “You think you’re confused? Imagine how I feel! The amount of pain I’m in, and nothing’s showing up on x-rays, but it feels like something should definitely be showing up on x-rays.” And it just gets worse from there. It seemed like that moment, I… June to August of 2017… or 2018, specifically was when everything just… full speed ahead. The second I started noticing everything going on, that was the second my body was like, “Oh, you see me now? Time to ramp it up now. You’ve been waiting 10 years to do this. You haven’t been paying me any attention. So I’m just going to make sure I send a regular reminder that something is wrong.
Brianne: Yeah. Like, “Buckle up.”
Teona: And that it does. It sends… every single day, it’s like something new is happening, and I can slowly feel it spreading. It went from one knee, to both knees, my ankles, to my hips. It always starts on one side, makes its way to the other, and it’s always each joint that coincides symmetrically with one another. And by the time this year rolled around… sorry. Whew. That just… brain just went all the way gone.
Brianne: It’s okay. It was in the middle… You were talking about your joint escalation. So you were saying one knee, both knees, and it was spreading one side, and then over. This is the one thing that my brain is good at is tracking the threads.
Teona: Listen, you and me… this is like a power team here cause my ADHD will send me out of the door.
Brianne: Yeah. Yeah I understand.
Teona: So I get to that point. Okay… This year and I’ve already… pain’s already ramped up. I’ve been going to physical therapy. They put me through some intense physical therapy for weeks, and that was expensive, so I stopped going.
Brianne: And were you… just… okay, just to get from the ER visit, which was like migraine slash knee pain, that was intensive and they’re like, “Guess what? Surprise! You’re fine,” and they send you home. And then you start to get more pain rapidly, and then were you paying for physical therapy out of pocket, basically? Since that is one of the few types of medical care that you can really… I agree with you it’s not affordable, but it’s… closer than anything else if you pay out of pocket, as sad as that is as a statement.
Teona: So essentially, I’ve… I missed a huge step here. It was the whole fight with my insurance. That was important. So, I lost my insurance in that June, that was the same month I started my job. My job has an open enrollment for the job insurance. I signed up for it. I get dental, vision, health. But then I go over the health care stuff and I’m like, “This literally covers nothing for preexisting conditions, and they’re going to consider this a preexisting condition, even if I don’t have a diagnosis.” So now is the time when I have to end that one, and I have to make some calls. So I call up… I go to the healthcare marketplace. I go, and I try to get insurance. I get… my state’s insurance call center that calls you to help find you plans calls me. We go over plans. I get this really nice lady, and she goes over plans. She’s like, “Okay. So here’s an insurance plan for you, and you won’t have to pay for your…” for the most part, she’s like, “when you go to a specialist, $5 copay. When you go to your doctor’s office, first three visits in a year are free, and you only got to pay a $3 copay after that. Prescription medications, about a dollar for certain things, for the most part everything’s covered, unless you have really specific medication.” And it’s literally my dream plan. There’s no deductible that I have to meet. Out-of-pocket maximum is like $2,500, which I’ll never reach. I don’t spend that much money, if my copay is like five bucks or less, never gonna touch that. So I’m like, “Okay, that’s exactly what I want.” So… I had to go do some work, so I was like, “Okay, I’m going to call you back, and we’re going to set this up.” Well, I call back, and I get another lady. And she doesn’t know anything about this plan. She doesn’t know anything about the lady that I was talking to, and she tries to give you this plan that’s worse than the plan that I got at my job. And I’m like, “No, no, see, I can’t do this.”
Brianne: Yeah. “This won’t help me.”
Teona: “I need something that’s going to cover preexisting conditions, and I need to either speak with the lady that I was speaking to… I got her name. I got her number… or see what plan she was talking about. Because whatever plan she was talking about, that’s the one that I want.” I went through literal hell trying to navigate all of this, and I had to make sure that my insurance through my job was canceled before the open enrollment period ended. I had to make sure that this lady was on the phone with me the whole time so that she could… you know, I didn’t want to get disconnected or risk losing it. And I finally get it. I can go to the doctor. So at the end of 2018, I meet my primary care physician. Wonderful lady, bless her soul, true angel, she’s friends with my pediatrician, and that was enough for me. So she’s like, “Okay.” And you know, the standard doctor stuff, ” You’re too young to be in this much pain.”
Brianne: Like, “That’s why I’m here.”
Teona: Yep. And so she’s like, “Okay, so we’re going to figure out what’s going on.” She’s ordering tests. She’s… you know, we’re like, “Okay, we’re going to send you to a specialist. We’re gonna do physical therapy.” So we get the physical therapy. My insurance doesn’t cover the copay for physical therapy. So it’s 50 bucks a session, and they realistically… they want me to go multiple times a week. I can only afford to go once or twice a week or every two weeks whenever I get paid.
Brianne: Yeah. It’s expensive.
Teona: Even when I go… mind you, this is before I got my… all of my diagnosis, so we don’t exactly know what’s going on, but we’re like, “Let’s see if we can just work out the knee, see if that’s what’s going on.” I go and, you know, it’s… I enjoy working out. This is the hard part. I had so much fun with the idea of the exercise equipment I was using. I… you know, I was like, “Okay, I’m going to get better. We’re going to get this solved, everything.” And then I just… it’s like… I just plummeted from there. I’m like, “Oh, why am I…” I’m in so much pain afterwards, and I’m not recovering, and I’m so I’m so tired. I’m so fatigued. I can’t get up. It put me on my butt for days, and I just couldn’t understand. I go back to the doctor and I’m like, “I can’t keep doing physical therapy. I don’t know if it’s because it’s not targeting something specific or what, but I can’t keep doing it. It’s killing me. It’s too expensive.” Cause like I’m not making anything. I’m 19, working at Chipotle, and the pay is not the best. I still live with my mom, but I’m paying for this out of pocket. So, yeah. You know, I’m letting her know like, “This isn’t working.” And I’m like, “I’m getting worse. I’m losing strength daily. Like I hold things and my arms just feel like dead weight after.” Like, I remember vividly, my mom… I was helping my mom with groceries, and I grabbed a gallon of milk. A gallon of milk is pretty heavy already, but I feel like I held a cylinder… a cement cylinder block, and my arms just felt like noodles. And I was like, “Okay, that… I’m sorry that tired me out.” So I go tell my doctor, and I’m like, “Hey, listen, I’m losing strength now, and I’m scared. I’m losing the strength in my body rapidly. I can’t walk. I’m unable to stand. I’m at my job leaning over the counter.” And she’s like, “Okay. Hmm.” So I remember she sits down. She’s like, “Okay. So I got an idea. And I really wish I could find that piece of paper because I would frame it. She put on it Myalgic Encephalomyelitis plus Ehlers Danlos Syndrome. And I think about this daily, because this is when brain fog really did me in. She tells me, “Okay, what I want you to do is do some research on these two things because these are… essentially these are things that I think could be what’s going on, and I want to go from there, but I want you to do some research, and I want you to tell me what you find, like how you feel about it.” Like the first appointment my doctor tells me, “Google this, and let me know what you think.” So I go home, and I forget about it. Hoo boy, do I forget about it. I forget about it bad.
Brianne: You were a different person then, you needed different things.
Teona: So the end of 2018 comes, you know, not much has happened. Aside from me getting some new insurance and getting a doctor who’s listening to me, and I get… this is when I get introduced to my rheumatologist. So I go see her at the beginning of 2019, and at first, we’re still… now mind you, like my doctor told me, you know, that’s not through. We’re going to pin up the note about the sticky note, but at the same time that, you know, that sticky note is waiting and gathering dust on my dresser, I’m currently being treated for fibro because no one else can figure out what’s going on. At one point I genuinely believed it was fibro because, you know, doctors are like, “Yeah, you know, all this localized pain? Fibromyalgia.” And I’m like, “Oh, wow. This makes sense.” This is me now, “No, it doesn’t. It didn’t make sense at all.” I think I was just latching on to the idea that it was going to be an answer, and I get put on Lyrica, and my rheumatologist is like, “Okay, monitor three months. You’re going to start out with 75 milligrams.” And this is me taking them. I’m not feeling anything. I don’t feel any relief. I don’t feel… I can’t even tell if it’s medication. You could tell me I took placebos and I’d a hundred percent believe you. There was no change in my body whatsoever.
Brianne: And no side effects, either? It was like nothing? Wow.
Teona: Nothing. I also started on topiramate at this time too, so I started taking topiramate for my migraines. That was the only medication I’ve taken in the past four years that has actually did something. It didn’t do anything for my migraines, but I knew I was taking it because it made me feel severe brain fog. And I could still tell I was getting migraines. It felt like the migraine was there, but it was muted, but still very much banging on the door.
Brianne: Got it. It’s like a weird barrier a foggy brain barrier.
Teona: Literal fog barrier around my brain. And then it made soda taste horrible, and when you work in food service total tasting like electricity is the worst thing. I literally couldn’t drink soda. Every time I had to drink it just tasted disgusting, and I love Sprite. I love clear soda. I don’t drink it often, so when I am drinking it, it’s delicious. But I couldn’t even drink that, and I’m like… this makes me… I had to tell my boss like, “Hey, I’m on a new medication. I’m not going to be at my best because this is the way it’s making me feel, and I’m waiting to get over that hump.” The hump never comes. I’m in that permanently. So they make me stop taking it, and the weird thing is, the next time I started taking it, at a higher dosage mind you, I don’t feel anything. All of that completely disappears. The only thing there is that soda tastes disgusting. It doesn’t help with my migraines, but I also don’t have that fog there anymore. It literally feels like I’m on a different medication, and nothing… I don’t even really understand it. My body just can’t process the medications I’m on apparently. So I go back to my doctor, and I met my rheumatologist. I’m like, “Alright, you’ve boosted me up to 150 milligrams twice a day. What else?” Or it was actually… it was, yeah. 75 milligrams once a day, 75 milligrams twice a day, 150 twice a day, and then eventually I was on 375 milligrams a day, once in the morning or… 150 in the morning, then the two whatever at night. Math is hard.
Brianne: whatever that math is 225
Teona: I’m gonna believe you and just go with that. Literally who’s going to check us. So I’m on that, and I feel nothing. Now, mind you, this is really wild because I’m like scrolling in bed, in pain, can’t get up, the normal stuff, and I’m like looking up stuff about Lyrica. And then I stumble across this Reddit forum where people are talking about the drugs they pop, and I’m finding out that people are popping Lyrica and getting high off of it. And this is me. ” getting high off this?” I can’t even feel anything. I’m in pain, and I’m… people are getting high off 75 milligrams of it. And I’m… this is me at 375… well I’ll be!
Brianne: Yeah. Not working. Not helping.
Teona: How are y’all doing? What’s going on? What what is y’all’s body’s doing that mine isn’t? So eventually I just stop it. This is not supposed to be a medication that you can stop. You’re supposed to taper off of it. It’s not a controlled substance, but you can have uncomfortable withdrawals. And this is me, “I don’t want to take it anymore.” I just stopped taking it. Completely. The bottle is somewhere over there. I just completely stopped taking it. I go back to my rheumatologist, and I’m like “You know, I don’t think I got fibromyalgia.”
Brianne: I wonder a lot, something about fibro is that like so many people with Ehlers-Danlos Syndrome are misdiagnosed with fibro that I also bet that like if hypothetically, you’re one of the people who’s misdiagnosed, and you join a patient group, you’re going to get a lot of reinforcement that people relate to what you’re going through, because so many people there, of course they relate to what you’re going through, because they’re also hypermobile. And there are people who have both diagnoses, and that’s an interesting thing because some people are like, “I have both, and they feel distinct for me.” And some people are like, “I have both, but they’re describing the same thing, so I don’t know what to make of that.” The intersection is weird, but yeah.
Teona: That’s why I got so confused because… so the big thing that was really confusing to me about fibro is that you’re supposed to have like this nerve pain when it comes to like you anything
Brianne: Yeah Allodynia, I think.
Teona: Yeah, and I couldn’t feel any of that. You know, I’m autistic, so certain fabrics just feel uncomfortable and painful in general because they’re a sensoral hell, but I don’t experience the fibro pain. And I was like “You know, realistically, what symptoms are fibromyalgia symptoms that are specific to fibro?” And I’m looking at them and I’m like “Hmm, realistically I don’t have any of these symptoms.
Brianne: It’s all joint pain, right? And migraines.
Teona: And there’s pain that isn’t exclusive to fibro because it’s usually symptoms that most people with chronic pain experience. Brain fog is partially inevitable when you’re experiencing pain 24/7. Your brain is like, “I’m working real hard to make sure you… you’re still good when you’re in all this pain, so like I’m tired.”
Brianne: Yeah It takes more work to maintain whatever this equilibrium is
Teona: So I ended up… I first go to my primary care physician, And mind you I remember… I remember the note and I’m like ” So I’ve done all of this medication for my migraines…” Cause like I didn’t even touch the migraines. I’ve been on like several different migraine medications that’ve done nothing. I’ve given up on that. I just suffer now. But I go to my primary care physician, and we’ve done all these blood tests. We’ve done all these x-rays. We’ve done physical therapy. We’ve tried medication, and I’m like, “I don’t think that I have fibro, and I remember that you were bringing up M.E. and Ehlers Danlos Syndrome. And I want to look into this.” Well, we look into the whole M.E. thing, and we start thinking about where it possibly could have come from. We started going over my symptoms, and she’s like… cause my lymph nodes are swollen, like all the time. I get sick at the drop of a hat. I can’t get out of bed because I feel like gravity is pulling me down, so consistently. I’m at the point where I’m considering getting a mobility aid. I end up getting my wheelchair, my first wheelchair, but I can’t use it for very long. I used it for a good four months before I lost the ability to self-propel, and I’m looking at her and I’m like, “Listen, I’m getting worse. And I’m terrified.” I’ve cried in my doctor’s office so many times cause I’m so scared.
Brianne: Yeah. Like, “What’s happening, and what can I expect if we literally don’t know what it is? How do I
Teona: Yeah. I remember I was going… I was getting tested for rheumatoid arthritis constantly, and like my rheumatologist was like, “You don’t have rheum. You don’t have rheum. You’ve got fibro.” primary care physician, and I’m just like, “She’s wrong!” I don’t know what I got, but she’s not listening to me. And I’m getting all these tests done, and she doesn’t care, and I’m scared, and I’m frustrated because I hurt all time and nothing is being done about it. Nothing is helping. I’m in pain. I can’t do anything. I’m losing my ability to live my life normally. So we go through the evaluation because there’s no true test for M.E. And she’s looking over everything, and she’s like, “That’s M.E. The fatigue you’re feeling for days and weeks after exerting yourself, even mildly, and the fact that you’re getting sick all the time, and your lymph nodes are constantly swollen, the migraines and the weakness.
Brianne: Did you get checked for POTS at that time, too? Since orthostatic intolerance is in the M.E. criteria, but it’s… it’s like one of the, and/or ones.
Teona: Yeah. I never actually got checked for POTS at all. It’s something that I’m still considering, but…
Brianne: But not at that time.
Teona: Yeah, not at that time. I didn’t even know what POTS was. I barely knew what M.E. was. So I go, we get that evaluation done. All my symptoms of M.E., like literally looking at the M.E. stuff, I’m like, “Oh wow, that’s me. Okay. That makes sense. Put that on checkmark. Okay. That rules out physical therapy?” She’s like, “Yeah. You’re not going back to physical therapy until we figure out everything that’s going on because it’s making it worse for you.” And it did. It made things 10 times worse for me I’m no… I can’t… I will never get back to the… whatever baseline I was at before physical therapy. That completely ruined everything for me. I can’t work out anymore, but that’s also because of Ehlers-Danlos Syndrome. So anyways, so I go… I thought… I go to my rheumatologists or whatever, and I, at this point I’m trying to… you know, I start trying to build up the confidence to tell her that I want to go another route because you know… obviously fibro’s not hitting. You keep telling me that rheumatoid arthritis isn’t there. I don’t know what else is left. So, but I’m like… you know, trying to get that information to her. It just doesn’t… it doesn’t reach. She is not listening to me. She’s never, she’s not present in the room when she’s standing five feet away from me. So I give up on that avenue. She’s sending me for more tests to get done. At this point, it’s the same tests have gotten done. I’m going over my charts regularly, and I’m seeing… all my charts say, “Hey, there’s some high inflammation markers here.” And I’m like, “Yeah, cause I’m inflamed all the time.”
Brianne: Yeah. You’re like, “And?”
Teona: Well, like, “What else is that pointing to?” Okay. And she keeps telling me I don’t have rheumatoid arthritis. She’s supposed to know there is a variation of rheumatoid arthritis that you can have where it doesn’t show up on a test. So maybe can we look into that avenue? Nope. She just… huge red stop sign in front of me and was like, “No, you don’t have any of the symptoms of it.” And I’m like, “Okay. Well what do I got the symptoms of, ma’am?”
Brianne: Yeah Like, “Great. It’s fine. I believe you that it’s not my first suggestion, but like let’s both come up with some ideas here. Come on.”
Teona: Yeah, like, “Can we be a team here?” No, there’s no team here. So, I go back to my doctor with this. This is 2020 now because 2019 is really uneventful. I got my M.E. diagnosis. That was the kind of it, unfortunately.
Brianne: And were you still working about the same? Were you able to work? How was the kind of coping with your life side of things, after the first diagnosis?
Teona: Well, everything changed and nothing at the same time. So my job is like, “We acknowledge that something is wrong, here’s 30,000 things for you to do. And we don’t care that you can’t bend.” Like I can’t lift. I can’t fill up the ice machine. I can barely stand. I need a chair. They’re having me do a lot. I have to keep the dining room clean. I have to keep the kitchen, the bathrooms clean. I have to do things in the kitchen to help people out in front. At one point, I was getting scheduled 10 hour shifts, and I couldn’t get a break because they just didn’t prioritize giving me one. And I remember one day I sit my manager down in the office, and I’m crying and I’m like, “Listen, it’s been a 10 hour shift. I haven’t had a break. I haven’t eaten. I haven’t sat down. I’m in an immense amount of pain, and I can’t come to work tomorrow because I’ve exhausted my energy for the week just doing this today.” And everyone’s freaking… nobody cares. No one takes me seriously, even at work, people just think I’m just in pain, and that’s fine.That’s not even normal to just be in pain all the time. This was around the time where I’m literally like, “No I’m disabled. I can’t do this. My life is severely impacted by this.” I can barely… I can’t work a 40 hour week. I’m barely pushing 20 to 30, and I’m on my feet all the time. And I just… I go home and it’s like every ounce of energy. I’m a negative battery. I walk around as a negative battery. I never feel well rested. I never feel energized. I’m completely drained every day. And I’m trying to arrange my schedule. “Okay. Give me a day off in the middle, and a day off on the weekends. So I have at least, you know it broken up.” But even that doesn’t help. I can’t do things around my house. I can’t clean. I can’t do… I’m noticing all my chores are slipping. Dishes aren’t getting done. Laundry isn’t getting done. House isn’t getting swept. The litter box goes… it takes me a day or two to get to the litter box because I can’t bend down to scoop it. And I’m noticing that I can’t do anything. And I eventually, like… I remember going, “Okay I need a wheelchair. I can’t walk around. I can’t do anything.” So I was considering, and I’m like, “My insurance isn’t going to… I can’t get a wheelchair cause I don’t have a diagnosis that they’re going to recognize.” This is before my M.E. was officially, officially diagnosed, so I got the chair before then. so I kind of just give up and then my friends are like, “We’re gonna fundraise. Whatever you gotta do, we’re gonna help you get a chair.” So I make a fundraiser, and I’m looking at wheelchairs online, used wheelchairs and different types of wheelchairs. I couldn’t go to an occupational therapist because I couldn’t afford it. And my… I couldn’t get a referral for it cause it wouldn’t matter because my insurance wasn’t gonna cover it. So I had to do this on my own, and I know that not having a wheelchair that fits you is going to do more harm than good, but I’m so desperate that I don’t have any other options. So I’m trying to fundraise. And then one of my friends in the city, they’re also disabled. They’re like, “I got a power chair now. I have a manual wheelchair that I don’t use anymore. And if you want, I’m not gonna ask you to raise more than what you’ve already raised.” I only managed to raise $250 for it and they said, “You don’t have to raise more than that. Whatever you got, that’s fine.” I got my manual wheelchair, and I love her, like, we’re going everywhere together, but then we’re also going nowhere because I’m on the second floor of an apartment. The world is inaccessible. My job doesn’t let me have a wheelchair. So the times that I do get to use my wheelchair feel really freeing, and I feel so happy, but then it all because now I can’t push myself. And my chair hurts, not because of the way it’s fitting, because you know, surprisingly that chair was really well fitted for me considering it wasn’t custom, but I’m experiencing… my joints feel like they’re shifting. And my wrists, like not even my wrists, like just my joints feel really sore. Like, it’s in the joint, like, digging in all my joints. So sitting in the chair is uncomfortable just because I’m only able to sit in a specific way because that’s kind of how the chair is. And so I eventually had to stop using my chair. I get my M.E. diagnosis, and we’re in like a gray area with my rheumatologist and, you know, still scared, freaking out all the time, losing it because my job isn’t accessible to me, and I don’t have a choice cause at this point I had to move out. I had to move out of my mom’s house in 2019. 2019, summer, my mom and I’s lease ends at the apartment that I’d been staying with her for the past five years as a minor and then adult. And she’s just like… she very politely kicks me out. It was like, ” I think you should get your own place.” And this is me, “Do you got get your own place money? Cause I don’t.” So there was like a whole emotional thing there because I’m scared. Now I have to get my own apartment, and that was just… my first apartment experience was horrible because I’m disabled. I’m at the point where I, realistically, can’t work. I’ve lost my ability to work, and I’m pushing myself to work 33 hours just so that I can make money. And I’m not making nothing. My mom was helping me out $300 of my rent, but I made… I had more bills than I had money. Remember that whole hospital bill thing? Yeah. My credit plummeted. I started this year off with a credit of like 400 and something cause I just ignored it because I didn’t have no choice. I couldn’t pay it off. All these bills for a doctor who barely looked at me. This man charged me $600, and he was only in the room for five minutes.
Brianne: Yeah he did not provide $600 worth of value to your life.
Teona: Absolutely not! Baby barely added $25 worth of value to my life. But I would have accepted $25 over 600. But I got this massive bill in collections because I ignored it because… what’s going to get paid anyway? I ain’t have $12,000, and I just watched them slowly take money out. Like, “Oh, well, she can’t pay that. She can’t pay that. She can’t pay that.” I’m like, “I’m glad you know because I wasn’t going to do it.” So it sits on my credit, it ruins it. I can’t apply for loans or anything. I can’t get a better job because nobody’s hiring. And even if they did, nobody wants a disabled person who can’t do most of the job tasks anyway. So, I’m dirt poor. I’m struggling every single month, because at the same time, I’m struggling financially, I’m struggling physically, mentally and emotionally because I’m in pain all the time and there’s no answers. And I’m pushing myself. The way life was at the time. So because of my apartment, I was on the second floor. So the stairs are already a problem. Well, I had to walk from my apartment down the road to the bus stop. Then I had to get on the bus, go all the way down to the beach where I worked, get off the bus, and then walk the rest of the way. If I miss the bus, that second bus, I had to walk 30 minutes, and I did that several times a week. So that also ruined my life because walking now… I used to walk all the time. I remember when I was younger, it was normal for me and my brother… we used to walk from different sides of the town together. That was me and my family because if you and your cousins want to go somewhere and y’all don’t have a car, that’s the only thing to do is to walk. Can’t do that now. Couldn’t do that then. And my fiance… he’s seen some stuff because I remember, I was like, you know, as usual complaining about the pain. I used to wake up and dread having to go to work, not because of the job part, I couldn’t even think about how it was going to be once I got there. The transit there, going from my home to the bus, to the next bus and then walking, and all the walking I had to do before I even made it to work. like the buses are so unreliable that I would miss them all the time, which meant I had to walk. And I couldn’t use my wheelchair because my apartment complex was so like laid out weird that there was no way for me to get around it. I couldn’t push myself up the hills, like I tried and it just did not work.
Brianne: It wasn’t helpful in those situations, yeah.
Teona: It hurt more. Like, this was around the time where I started noticing my hands are messing up. We’re going to get to 2020, and I’ll expand more upon this. But outside of not being able to self propel because my arms are getting weak, my hands are hurting. I can’t push like the handlebars, like it hurts, and there’s… even if I got stuff to assist, it was still not going to be able to be something I could do. And then I get to Chipotle, and I’m like cutting them peppers and doing all this stuff and hands killing me. Hands are killing me. Can’t do anything about it. Can’t wash dishes. I can’t hold a plate. I can’t hold a cup with two hands. Since apparently that’s the thing that everyone thinks is so special that they can do. can’t do that. Straws are all around my house. If you see me holding a cup like this, odds are, I’m holding it like this.
Brianne: All the time. Accidental dropping is probably a problem by now, right?
Teona: I literally just dropped a plate like two weeks ago with my last leftovers on it. I had bought Corel dishes that morning. I don’t know what happened. I bought those that morning, but that evening, lunch time came around, and it’s like the plate just flew from my hands. And I just stood there and stared at it for five minutes. Like, “Not only did you break your plate and you have to clean this up, but that was the only leftovers you had. So now you gotta order food because you don’t have the energy to cook now.”
Brianne: Your hands have already shown you that they are not gonna be cooking today.
Teona: Literally, so I’m, I’m dropping things. I can’t hold things. Life is living hell at this point. I can’t do anything. So we get to 2020, and there’s like a lot of little things that are going on but honestly there’s too much. But 2020 rolls around, at the beginning of the year I’m still using my manual chair, and I’m using a cane, and I’m just like, “Neither one of these things… neither one of these things are working for me.” And I’m at the point where I’ve done enough research on Ehlers Danlos Syndrome, I’ve talked to enough people… because, you know, I remembered the note. I remembered that there was another thing at the bottom of the note that I should probably have looked into. And I go look into it, and I look into the 13 different types of it, and then I look at the hypermobile type, and I’m like, “Well I’ll be damned if that ain’t every single Symptom that I’ve dealt with.” I subluxed my ankle at work one day, and I walked on it for two to three months before I realized it was out of place and that was why I was feeling the way it did. I just…
Brianne: but how would you know?
Teona: Exactly. exactly I just thought I twisted it in how I was waiting for it to untwist itself
Brianne: Yeah. Or like you’re like, “Oh, I hurt it, but the hurt already happened. So it’s just like going to heal on its own.” But like… nope!
Teona: That’s exactly what thought. It took… I was like shoving my ankle back into place and twisting it around like… doing everything cause it just felt like I constantly needed to pop it, and I didn’t understand that that was a sublux. Like I’m like, “Why is it feeling like that?” And it’s still really messed up now. That’s the… if an ankle is going to sublux, it’s going to be that one now. But I go back to my doctor, and I sit her down and I’m like, “Alright, so you remember that little sticky note you wrote me with like, you know, M.E. on it and then Ehlers Danlos?” So she was like, “Yeah.” And I’m like, “Yeah. So just know that I lost a sticky note, but I remember that something was on there. And I want to look into that. Like I went and I like looked on Google and I looked at the official Ehlers Danlos Syndrome society. I looked at so many medical journals. I’ve talked to Ehlers Danlos patients, and this was my whole life right here. This right here.” I was very flexible as a child. What I’m not is flexible now, because my joints have stiffened up so much, but that’s why at first I didn’t think about it, is because I’m like, “Well I’m not flexible.”
Teona: I don’t remember. How… is it 1 to 10?
Brianne: Yeah I think it’s 1 to 9.
Teona: 1 to 9? Okay. I’m pretty sure…. I think it was 7. It was minimum 5, 7 maximum. I don’t think I got all nine. So I went, I remember she was like, “Okay, so here’s what we’re gonna do. I want you to go back to your rheumatologist. I want you to tell her this.” Because you know, we want to make sure everyone on my care team is on part because she’s trying to send me to get these tests done again. And now mind you, I’ve learned how to talk to these doctors. I’m gonna name drop my primary care physician, and I’m gonna name drops some medical journals and some doctors, because otherwise you’re not going to think I know what I’m talking about. But I go to her and I’m like, “Alright so, the past couple months, me and my doctor had been doing our research in conversation about this, and we want to go into looking into Ehlers Danlos syndrome because I experience all the symptoms of it. I’ve experienced subluxations, and I want to make that’s a part of our evaluations on this end too.” She makes an attempt at doing the Beighton Score. Now mind you, at this point, I’m in my power chair because my friends are amazing and helped me get that, just like they helped me get my damn apartment.
Brianne: Yay! Friends are great.
Teona: They’re great. 2020 has been a hell of a year, a lot of good, hell of a lot bad, but one thing I can say is, I got some really good friends. So I have my power chair, and mind you, every time I go into the doctor’s office, I got a new mobility aid because she keeps trying to tell me that… she was the one that told me I shouldn’t use a wheelchair because I would weaken my muscles. And this is me, “But my muscles are already weak ma’am, so what am I supposed to do?”
Brianne: Yeah. You’re like, “There’s something to it, but you’re focusing on the wrong problem right now.”
Teona: Yeah. Like, “Maybe we should focus on why I’m weak in the first place and needing this before we talk about what might happen with me using it. Because if the only risk here is that my muscles are going to get weak, well that ain’t nothing different than day-to-day life, so…”
Brianne: Yeah, “That doesn’t really sound like a risk to me right now when it’s already my normal.” Yeah.
Teona: Yeah. Like, “At least I can get around. That’s definitely what’s different than now.” So I have my power chair. I’m loving it, living life, feeling like a baddie cause my chair’s beautiful. So I roll in there, and telling her this information, she makes this real weird attempt at doing a Beighton Score on me. Mind you, she ignores the bottom half of my body. She just like takes my arms and my fingers, and she starts bending them and doing all this stuff that mind you. She bent my fingers, and I still felt like she was bending my fingers days later. She did the thing where she did this.
Brianne: Yeah, the down one.
Teona: And this is my thumb for a week. “Why do I still feel like I’m being pushed against my wrist?” And I’m like, “You know, I’m pretty sure there’s something to that. Nobody feels that. Why would I still feel that?” Like, she bent my fingers. I still feel that. And she’s like, “Well, you’re hypermobile. You do have some hypermobility, but you don’t have Ehlers Danlos syndrome And I’m like, “You didn’t do the rest of it.”
Brianne: Yeah. Like, “Okay, tell me more about that.”
Teona: “Are you going to expand upon that or… No? Oh no you’re not going to expand upon it.” Now, mind you, this is where she changed her story, and this is what sent me. So for the past couple of years she’s been saying, “No, you don’t have rheumatoid arthritis. No, it doesn’t matter that your rheumatoid factor is like one point elevated. You don’t got it.” And this is her after I introduced Ehlers-Danlos, “Actually I think you have rheumatoid arthritis.” And I’m like…
Teona: “What changed?” Because my test results have been the same the past couple of years. My rheumatoid factor is going to be higher. It hasn’t raised beyond that slightly elevated point. I’m not even in the range for it. Here’s the normal, here’s that little gray area where they’re like, “Huh,” and then here’s “You got it.” I’m here. Which honestly at this point I don’t even think is enough because I’m having chronic joint pain and connective tissue problems. I imagine that even though I don’t have rheumatoid arthritis, that marker is still going to be very slightly elevated due to the nature of what’s going on in my body. So at this point I just ignore her. I leave the office. She gives me a test to go do that’s supposed to basically look at different… it’s supposed to be like, it’s called a Vectra. I don’t know what it’s supposed to be, but it’s supposed to be a way to look at the history of how your body has responded to pain for the past of years because she wants to try and evaluate for rheumatoid arthritis now. And this is me, “I’m not doing that.” One, because I don’t have the time. I don’t have a car. I can barely get to my own doctor’s appointments on time. I was supposed to get blood drawn again like a week or two ago, but how am I supposed to get there? I got a doctor’s appointment next week. I’m hoping if I can make it to the place to get my blood drawn this week, that can speed it up and get it to my geneticist so I can get that appointment done, but… oh that’s… I guess that’s a spoiler, but then I got Ehlers Danlos Syndrome. So I ignore her. I go back to my doctor, and I’m like “She doesn’t know what she’s talking about,” essentially. And actually I don’t go to her. I send her an email because the beautiful thing about my doctor is I can email her, and she responds.
Brianne: Yeah. It’s amazing!
Teona: Wow! So I emailed her, and I’m like, “Yeah. So I talked to my doctor, and she didn’t listen to me. I just want to go ahead with this. She’s like, “Okay, let’s find you a geneticist .” It took a while. Some of my friends on Twitter helped me to o. They were like, “Let’s see if we can find some geneticists that take your insurance in your area.” I don’t know if you know Sparrow on Twitter, but they helped me. They were in my DMs, like, “Okay. So I found these couple of doctors.” And it’s funny, one of the doctors that they found me ended up being my doctor.
Brianne: Shout out to Sparrow.
Teona: I love Sparrow. So I talked to my doctor, we ended up finding a geneticist that takes my insurance Dr. Percy is amazing. I go to his office and this was literally the most life-changing moment in my whole life. “The most life-changing moment in my whole life,” anyway…
Brianne: No, it fits here. It’s just how real it was. It’s a big deal.
Teona: So I go there, and he sits me down and he’s like, “Alright so I understand that you think that you may have Ehlers Danlos Syndrome.” And I’m like, “Yeah.” I walk him through the past four years. I walk him through stuff from my primary care physician, my rheumatologist. And I’m like, “Yeah, I did all this research. And I’ve been talking to other Ehlers Danlos Syndrome patients.” And he’s taking notes the whole time actively listening, and then he just looks up at me and goes, “I’m going to tell you right now you got Ehlers Danlos Syndrome, so there’s that. You’re right.” I almost started crying, and like… he’s literally just… he’s so casual and he’s like, “So your rheumatologist did you a huge disservice. They should have seen this in the beginning. If you weren’t responding to tests, you weren’t responding to medications… they should have sent you our way because this is textbook hypermobile Ehlers Danlos Syndrome and I’m like…
Brianne: Yeah. “Excuse me?”
Teona: He’s like, “Here’s what we’re going to do.” He doesn’t promise to cure me. He doesn’t promise to do anything. He’s like, “What I want to try to do is see if I can get you up to at least better mobility through some treatment options.” And he sends me… he gives me a packet of information for starters, because I forgot to mention this. Some other symptoms that have been amalgamated to this. So I thought I was lactose intolerant for a long time because I thought I was reacting to lactose. No. My stomach decides what it wants to like and what it doesn’t want to like. We had already done the whole test for Celiacs thing where I cut out gluten for a long time, and that was horrible. Never want to do that again. I eat too much bread and pasta and too many things that have gluten in it. And it was just very hard, very unhappy time because I rely on the sugars and carbs and everything to keep the dopamine going up here. But so we, we limited that out. Lactose intolerant? No, because although I will say my body prefers the lactose-free milk. It doesn’t care how much cheese I eat, butter I eat, cream I eat. It cares some days. I can eat the same meal two days in a row. One day, my body hates it. The next day, my body hates something else. And I have really bad GERD. I’ve had that my whole life, didn’t make the connection, didn’t make the connection. And it got worse. This is me now. Like I’m waking up… this is kind of gross, but I’m waking up and like stomach acid’s coming out of my nose and I’m like, “You know, definitely that’s not normal.” I’ve never experienced that before, so I know this is not normal, at least not for me. So there’s that. I’m experiencing all these intestinal problems. My bladder is horrible. I have had several accidents, not knowing why, and I have to drink so much water, so it’s horrible. And I’m all these things and I’m like, “Wow, this was all… It was EDS all along.”
Brianne: Yeah. All those things track to EDS or co-morbidities pretty directly, which nobody knows until they know. Right?
Teona: I tell him that I dislocated my ankle, and he like… and my thing is he doesn’t make me prove it. He doesn’t make me show him that I’m flexible or anything. Cause I tell him, and I was like, “Yeah, I’m not flexible anymore.” And he goes, “Yeah, that’s completely normal. When you’re in pain a lot, your joints are probably going to stiffen up.” And I’m like, “What is this validation?”
Brianne: Yeah. “Where did this come from?” I wasn’t expecting to be just flat out diagnosed and validated so much in such a short period of time. I thought I was going to be here for days, and he’s… within the first 30 minutes of talking to me, he’s like, “That’s 100% textbook Ehlers Danlos Syndrome.” And he’s like, “Here’s what we’re going to do. First thing first, we’re going to do some blood tests just to make sure you don’t have any nutrients that you’re missing.” Because I am… or was vitamin D deficient. I got that taken care of. I’m still on a supplement for it. And he was like, “We’re going to also take a look and see if there’s any connection between something you’re eating in your diet to see if we can ease up those symptoms in your GI.” And I don’t think that we will, because my body just hates me. And I’ve accepted that. I’ll be delightfully surprised, if there’s something I can do, but I’ll probably be really sad. Cause he’s probably going to say, “You got to cut this thing that you love out.” And I’m going to have to decide if I’m going to just suffer or listen to him. Jury remains, so we’ll see how that goes. But he’s like, “Yeah, we’re going to do this, that and the third.” And he gives me a packet of information from a medical journal from Google. And I have the PDF of this medical journal on my thing now, but not only does it include information about Ehlers-Danlos syndrome, it includes how Ehlers-Danlos syndrome can affect sex life. It talks about GI issues. It talks about vaginal and anal… rectal prolapse. It talks about medical marijuana and Ehlers Danlos Syndrome. All of these things. This is me like, “The only thing that I’ve been able to use that helps has been medical marijuana.” And I’m like, “Wow, this… I didn’t think I was going to find a doctor that supported that. Nice!” like, literally, I was looking over the packet, and I’m like crying because it’s literally telling… it’s reading me for filth basically. All of my symptoms, everything I experienced, from little things, are there. And like I’m telling him like at the time my hands have… I’ve lost the normal use of my hands that I had. My hands hurt all the time. I can’t hold things. I write, and I’ll write and then my hands are just like pain for days. I can’t hold things. I can’t wash dishes. I can’t do anything. And I’m telling him all these things and he’s like, “Yeah, no, that’s completely normal. We’re going to go, and we’re going to see what we can do. We’re going to see what kind of OT we can do, all this other stuff.” So I get that knocked out of the way. I get smart crutches because of my friend Faye, and those are amazing because now I have something I can use when I have the ability to stand. And then I go to my doctor, and I tell her this she’s like, “Yay.” I tell her, I was like, “Okay. Well I’ve reached the point where I need to start talking about a home health aid because I can’t do anything by myself anymore.” And I can’t rely on people to come and help me because my mom is busy, my dad works all the time and late at night, and my friends live 15 minutes away from me, but they’re also working. These are all people in my quarantine bubble, so I’m really glad about that, but they’re also still busy. Not everyone can… they can’t drop what they’re doing to come help me. So I’m talking to her about it. She’s like, “Okay, so here’s what we’re going to do. We’re going to try and get you a home health aid so that they can both help you out with… around the house making meals, but also doing some occupational therapy and some physical therapy.” Because my doctor… my geneticist was like, “Okay, so I want you to do physical therapy again, but we’re going to make sure that it’s not overexerting yourself, and it’s aware of the M.E. and the EDS so that you aren’t… basically something gentle. Something to see if we can still get some movement going that’s considerate of these problems.” Literally every step of the way, he’s validating me, but he’s also not forgetting about my M.E. My rheumatologist is still trying to send me to physical therapy and I keep going, “No. Never. No, because you don’t know what you’re talking about, and I’m not going to go back to some physical therapist who doesn’t know what’s going on with me and has never heard of my conditions.”
Brianne: Yeah. If they don’t know about even just… especially with PT, obviously it matters for M.E., a lot, but also with hypermobility if the PT doesn’t know about hypermobility, they hurt people all the time.
Teona: Yeah and I don’t… I can’t deal with that anymore. I’m already at that point where I have lost the ability to do pretty much everything on my own, and I just do it because I don’t have a choice. I can’t risk ruining things unnecessarily further. The most walking I do unassisted is to my dumpster, which is… even then, it’s not that far, but that’s a risk I take because I have to carry trash because that builds up. And I can’t use that and my crutches at the same time. And I can’t use that and my chair because I have to propel my chair, which means I have to hold the trash can.
Teona: And that’s already hurting because that’s one hand just holding the bag, filled with heavy stuff.
Teona: There’s so much that I can’t do now.And at the same time that this is happening… Oh! I’m visiting the possibility that I either have mast cell activation syndrome or I’m having just mast cell reactions cause at the beginning of the year, my allergies… I’ve never had allergies, but I step foot outside when there’s enough pollen and I can’t breathe anymore. I literally like… there’s a point I thought I caught COVID at the beginning of the year because I woke up one night and my lungs… I couldn’t breathe. I could only take short breaths. I couldn’t. I woke up crying and freaking out, and I called my mom I’m like, “Mom, I can’t breathe. I don’t know what I’m doing. I’m so scared. And I can’t sleep.” And I’m literally like boohoo crying because I’m so scared because I can’t breathe. And my stepdad comes over, and he comes to get me. And then, like, I remember at the same time, I couldn’t put my own shoes on. So he helped me put my shoes on, and he put me in the car went he took me to… an ER but not ER.
Brianne: Urgent care?
Teona: Yeah, an urgent care.And thankfully my insurance covers that for the most part. He paid for the copay. It was like 20 bucks, if that, but they monitored my heart, they monitored my breathing, they did an x-ray and everything, and nothing. They did a whole flu test. They shoved that little thing in my nose, which… I thought I got tested for COVID or something, because COVID was a thing, but we weren’t really aware of it at this time because this was in February.
Brianne: It was like in the news. It was in the country, but the country thought that it wasn’t, kind of.
Teona: So I could have gotten tested for COVID or I just got tested for flu I’ve never had a flu test before so I don’t even know if that was a normal thing or not. But they were just like, “Yeah nothing’s wrong.” So I go home, and it just keeps happening. And I started making the connection that I only ever experienced it once I went outside or if I have a window open. So I go talk to my doctor and she’s like, “Hmm, this might be allergies.” And I’m like, but I’ve never had allergies before.” And yeah, like I don’t have allergies. I experience a lot of mucus and stuff, but that’s because of M.E. I’m sitting here mucusy, one, because I think I’m getting sick or my body is Doing weird stuff, but I couldn’t figure out where this came from. And then I was looking into it. It’s common for people with Ehlers Danlos Syndrome to also have… not even just always have MCAS, but have some mast cell reactions to things. And I’m noticing I’ve always had sensitive skin on my face, but I’m starting to get an allergic reaction to something where I have red puffy under eyes, like swollen. I remember one day I got out of the shower and looked in the mirror and my eye was so swollen and puffy and red under my eyes. And they were itchy. And then another day it happened again. And I’m like, “Where’s this from?” And I’m still experiencing it. Sometimes it’s really faint, and then sometimes it’s just… I isolated, it’s not my glasses. I keep my glasses clean, my pillowcases clean, you know, everything. I still haven’t figured out what causes it, but there’s a lot of dust in my home. So I have to now be more like aware of this because I remember my AC was really dusty and my desk sits near it, and it was on, and I couldn’t breathe. I was like, Feeling the pleurisy because it’s connected to outside too. And I’m like, “Okay, let’s go off of this from an allergy standpoint. If it was mast cell activation syndrome, what allergy medication would be a good start? Just to test it out.” So everything points to Nasalcrom, which is like 10 bucks on Amazon. mind you, I ended up getting it after paying for… yeah mine is… where is it?
Brianne: Yeah I just held up my bottle for people listening. Yeah.
Teona: So I got that, but I ended up getting it after… cause I didn’t know Nasalcrom wasn’t sold in my pharmacy. So when I went to my pharmacy, I ended up with Claritin D and Nasacort, which… they’re cool. They don’t really do anything for the lung stuff. My Nasacort does, but Claratin D doesn’t do anything but make me sleepy. So I don’t take it. I’ll probably find one of my friends with allergies that take it and be like, “Well here’s an unopened box for you.”
Brianne: Yeah, “Enjoy.”
Teona: But I got some Nasalcrom. I bought a second bottle. I bought my friend who thinks that she may has have it one, because I’m like, “Well, until you can get to a doctor, try that out at least. And let me know because that’s what everyone was telling me to try. And you got way more possibility to have it than I do.” But that started helping. And I’m like, “Okay. Hmm.” Cause the other allergy medication isn’t working. So I’m still monitoring that one, and we’re going to see before I bring that up to my doctor as a possibility, but it’s like, “Hmm, that didn’t start happening until everything else started happening.” And that just seems to be the running theme is that my migraines didn’t start until my joint pain got worse. And when my joint pain got worse, that’s when everything else started and I’m like, “This is definitely odd.” Don’t know when everything officially… what happened? What triggered it? Who knows? It just seems like the more things that start up, the more other things start up, and not sure if it’s coincidental or if it’s just because I’m progressing in both age and my experience with my conditions that this is just a development that’s normal.
Teona: None of my doctors know. We just know that… at least that I got Ehlers-Danlos syndrome, and I got M.E., and at this point, as long as they know that, I’m good. It’s just so much… it took so much just to get to this point. That I don’t know. It’s rough to think about because I feel like I could have avoided a good amount of… I know that I’m lucky because I know it takes so long to get an Ehlers Danlos Syndrome diagnosis. And I got one within 30 to 45 minutes of being in my new doctor’s office. And my primary care physician was like, “Yeah, I have several young patients your age who have Ehlers Danlos Syndrome, and your story was just like theirs.” Oh, another key part here. So when I started writing… I have been friends with my AP psychology teacher from high school for five years, so after I graduated… me and her cool, love her to bits. She read my writing, and she commented on my Facebook post when I posted my piece that I had wrote. And the one that I wrote was like this really mushy piece, just talking about my fiance and I in our relationship. And I talk about my symptoms and everything and she reads it and she was like I love y’all And also I’m about to message you And I’m like huh So I look at my phone. I get a message. She’s like… the first thing she says,” Have you ever looked into Ehlers It’s so weird because all other zebras see me. They seen me coming a mile away and they’re like, “Yeah, that’s EDS right there.” And this is me, ” Is it But she was like yeah Have you looked into this Because I don’t know if you remember but I got this and you just read my life and I’m like well yeah I’m actually in the process of being evaluated for it She was like good because All of that was what I was dealing with And then it made me remember when I was in high school And she talked about that because I remember her showing us that she was flexible and everything. And it’s wild that I forgot about this.
Brianne: Yeah. It wasn’t relevant for you then. Yeah.
Teona: Yeah, and it so important because I remember like, she also had a baby, and a big thing with EDS… I remember that was a concern of hers because she has EDS and everything and… how hard it was on her, yeah. She just talked to me about it, and I’m like, “Wow.” That one moment like, that happened right before my EDS diagnosis, and the fact that she just read me talking about my experiences, and was like, “So you may want to look into this.” It’s no coincidence that all these people have been telling me for the past three years, “Hey look into this.” “Hey look into this.” “Hey look into this.” And then that’s exactly what it was. But like, the fact that others– other people saw it, but my rheumatologists didn’t, that’s the thing that’s so frustrating to me. There are people who don’t see me in real life, who can only read my words, and they saw it. And that’s what the difference is because see these people are listening when my rheumatologist wasn’t. She didn’t even look at me when I would go into her doctor’s office. And all it took was people actually reading the stuff that I say and talk about, and they’re like “That’s a zebra thing. Oh, that’s the textbook definition of a dislocation.” didn’t know what a sublux was. I didn’t know how it was different from a full dislocation, and when I found out I’m like, “I experience that all the time.” My joints pop, I sound like a rice crispy treat when I walk into a room. All of my joints are shifting and popping every day. I’m… they’re doing it as I sit here. Also I’m sitting cross-legged, and I don’t know why I’m doing that because that hurts.
Brianne: I’ve been moving every 10 minutes of this whole call.
Teona: I’m so fidgety that I try very hard to stay still, this is like… my body’s just like, “No, that’s not comfortable. You got to like have your legs sprawled out because if you’re putting any amount of weight on this ankle you’re going to pop it out of place.”
Teona: I’m a throw you into this too, because I listen to your podcast and everything. And like, just hearing stuff that you were talking about, right before all of this… cause I remember I was reading… I think someone came on, and they had EDS or you… you actually linked me to people who had EDS and M.E., and I listened to them, and I’m like, “Wow that’s wild. That’s… I’ve felt all of that.” And, “I related to that,” or, “I didn’t relate a hundred percent of that, but I relate to something similar to that.” And it’s like… the two things that doctors don’t seem to understand, and I got both of them.
Teona: And the hard thing now is like… cause I talk about this a lot. People think that just because you get a diagnosis that suddenly everything opens up to the world, but it doesn’t mean… getting a diagnosis doesn’t mean anything if nobody’s going to listen to you, and they don’t know that it exists. At this point like, I have my primary care physician, and I have my geneticist, and that’s enough for me. As long as they can get me the care I need, I’m good with stopping there, but the frustrating part comes… that if I have to add more people to my care team, I have to run through this introduction Again and again and again, and I have to continue begging doctors to listen because even the word of my primary care physician and my geneticist may not be enough because some doctors just don’t care what other doctors have to say.
Brianne: And they just don’t believe you about your own history sometimes.
Brianne: Like, “Interesting that another doctor thought you had that condition. I don’t so…”
Teona: Yeah, and like, I have to run through this thing with my rheumatologist where I basically tell her, “Hey you were wrong, and this is what my geneticist said.” Like a child going to the other parent because one parent says one thing and the other says another, “Well mom said.” Because I have to do that because otherwise she’s going to keep treating me for the same things that she’s been treating me the past few years and getting nothing out of it.
Teona: And it’s just… it’s so exhausting just thinking about all of the symptoms that I’m now dealing with every single day, and I had no understanding, like, I at least don’t have to freak out now because I know that it’s normal, and I’ve recognized it. But I’m still scared because what if it’s possible that there’s something else going on? Like, there’s always the whole, “What if?” thing because no one ever a hundred percent knows what’s going on with their body unfortunately. And at one point I was just so afraid of dying because I didn’t… I was getting so worse that I felt like I was dying because what else can explain feeling like the life is being zapped out of you, literally? And like what if I reached that point where I have no more life in me and nobody is listening? And it’s just so frustrating because I feel like I could have at least had a better shot at being at least at a better baseline than where I am now if I hadn’t been put through so much unnecessary treatment. Unfortunately that’s a part of getting a diagnosis, but it just sucks in hindsight because you wish that you could have just got here in the beginning and skipped all the time and the money and the medication, because my liver…. I know my liver hates me. Because there’s no way, after all the medication, all the ibuprofen 800… I have to pop so much pain medication, and none of it does anything because my body just doesn’t metabolize it. And that’s something I have to talk to with doctors and stuff, is letting them know, “Hey, I don’t respond to medication at all for the most part. Everything I’ve tried doesn’t seem to have any effect on my body whatsoever, so don’t be surprised if you put me on something, and I come back and go, ‘I didn’t feel any of it,’ because that’s where I’m at with the medication I’m on.” I got put on Gabapentin, a high dosage of it, and that didn’t do anything. I’m on Meloxicam and whatever the other one… Baclofen. And none of them feel like anything. I’ve just accepted that I don’t think that I metabolize medication, and I know that at least with Ehlers Danlos Syndrome, there is a gene that affects your ability to metabolize the controlled substances. My brain isn’t working when it comes to the exact ones. I’ve never had to be on them, so I can’t recall the names, but I’m gonna ask my doctor if that is trickles down to regular stuff, like muscle relaxers and anti-inflammatories and nerve pain medications because why can’t I feel any of them? How come they aren’t helping? I’m just glad that I’m at least in the place where I have mobility aids, and that makes a difference because I would be in a vastly different place if I didn’t have the ability to get around the way that I would like to. And I still can barely do that, but I have a better option, and I have a better team of support that helps which is leagues different than how things were in the beginning. I’m glad it didn’t take 10, 20 years, but these past three or four years have felt like decades. This has been so long, just because mentally I’m… I’m not here, ever, so it feels like it’s just dragging on. I’m not present of the amount of pain I’m in or the amount of brain fog I’m in. The fact that I’m even lucid now is what’s wild to me because I haven’t had coffee, I haven’t had water this morning.
Brianne: Oh my goodness.
Teona: Because my water bottle is all the way out front because I left it there last night, but I got lemonade. But yeah like I get worried that I’m losing my grip on reality, just because of how bad brain fog gets. That’s the biggest thing that’s affecting me, is that I can’t hold on to things that are happening in the moment most of the time. The fog doesn’t lift. I’m just stuck in it. I’m waiting for a little sliver of sunshine to shine through it, and that’s basically where I’m at everyday now.
Brianne: Yeah. Yeah and you’ve been talking throughout this about work too. Has… are you still working in the same place and schedule right now?
Teona: Actually no I… so I was very customer-facing the entirety of the pandemic
Brianne: Oh right. Of course, also I’m sure that the… for some reason, even though that’s obviously been a part of this entire timeline, I forgot how much it would impact customer-facing work. I’m like, in an alternate universe right now apparently. I haven’t left my house in a long time.
Teona: I wish that I could relate in the beginning. Cause this is me, “I left the house all the time to go get yelled at by people who wanted Chipotle in the middle of a pandemic.” But I was a cashier. I was a certified trainer, but I mainly did the cashier. So I was the most customer-facing person. In the job. So I… at one point we had someone catch COVID, and she didn’t get exposed at the work, but there was a possibility that she may have come into contact with people. And there were too many people getting sick around me, and one day I just got really sick. It was possibly just my M.E. just flaring up, but I stayed home for a while and I said, “Okay, I’m not going to come back to work until I get tested because…” This is also when my pleurisy was acting up. I couldn’t breathe. So I told my manager, “Okay, I’m gonna go get tested. I’ll come back when I do.” But testing, if you didn’t have a car, was hard to get.
Brianne: Right, cause it was all drive-in centers where they come up to your window or whatever? Yeah.
Teona: So I couldn’t go get tested and then… it’s just weird how life works, so my best friend had been waiting to get her stimulus check, and I was out of work for a week. I’d already paid my rent and everything. So I was okay with… I should have thrown this in I got a new apartment. It’s on the first floor. It’s amazing. My friends helped me get in here because when I had to pay my deposit and everything, I had nothing in my pocket. My job was not going to cover paying for this place, even though it was cheaper than my last one. But my best friend randomly called me. And she was like, “Hey, what you doing? You want to talk?” And I’m like, “Yeah I love talking to you.” And she was just sitting there real quiet, and then I get notification on my phone where she just Cash Apped me several hundred dollars from her stimulus check, and I’m like, “Girl, what are you doing?” And she was like, “I told you that when I got my check, I was going to help you out.” And I’m like crying and freaking out because I’m like, “What? What are you… I don’t even remember you saying that.” She’s like, “I told you that I was going to at least give you a portion of it. I didn’t get as much as I thought I was going to get, but I’m still giving you that.” And because she did that I paid off my August rent.
Brianne: Yay! And I quit Chipotle. I said, “I’m not coming back because I got put at risk.”
Brianne: Yeah, “It doesn’t feel safe.”
Teona: It didn’t feel safe at all, so quit which I was like, “Okay so… I’m going to find another job eventually, but I at least got a month and a half to do this.” Then before August 1st, I get a job offer. And they… they’re like, “It’s a work from home job until the pandemic is over.” And I’m like, “Oh okay.” So I interview for it. I’m not feeling very like hopeful or anything, I’m used to the disappointment of jobs either ghosting me or not hiring me. And then they hired me. So I quit Chipotle, and I start this job, and it’s 40 hours a week. And it’s still a lot. Like mentally, I’m not here, but because it’s work from home, I’m at least in a better spot, and also I got some understanding coworkers. One of my team leads has fibro, and we were talking about it and and stuff. So like, there’s a lot of understanding there. I’ve had to take days off. I’ve gotten some points accrued, but there’s some accommodations that I can get, at least to lower my hours from 40 hours a week which is what I’m going to be working on because I got promoted. So I’m going to wait until I finished some of the beginning stages of my promotion to do that, and I at least know that by the time the pandemic is over and it’s safe to go back, hopefully I will have a car, so I don’t have to deal with the transportation issues. Even if I have to go back to the office, it’s still a comfortable job to sit at and do. You know I would prefer to not have to do any of it because it’s still mentally exhausting, but it’s leagues better than the other job, and I don’t have to worry about hurting my body in the process. I just got to worry about what’s going to happen if I can’t get out of bed one morning, and that’s been a couple mornings, so it’s better with an opportunity to get even better. It’s a lot more promising which is a big change because my biggest problem was that my job, my old job required so much out of me for so little money, and now I make enough to maintain my house I might not always have things extra but I paid off my collections debt.
Brianne: Yes! I got $57 left. That’s gonna get paid next month. I didn’t… they took down a lot of it.
Teona: I ended up only having to pay about 6 or $700, but 6 or $700 is a lot when you don’t make more than $9,000 in a year.
Brianne: Yeah, that’s still like, a dark cloud just hanging over your credit, like you said.
Teona: My credit is fair, and that’s different. I haven’t been there in a long time, so I’m at least in a better… I’m in a better place financially, better place mentally, Yeah we still trying to get to the whole you know physically part. That’s probably not going to help, but I’m at least… there’s a goal. I might not reach it, but I’ll at least get assistance with it. If I can at least get some OT and PT that’s targeted for me, that’s a promising venture. And I’m going to wait on that. I’m waiting to hear back from the company that Does the commercials, they’re gonna call me and set up an appointment. If not, I’m going to call them, and be like Yo, did you get my referral?” But work is 20 times easier. I like my job which is different because I hated my job before because y’all was not finna sit here and yell at me and I’m getting paid only $10 an hour. I don’t like that.
Brianne: You’re like, “This is not enough money for how mean people are.”
Teona: And how much, like… how painful it was.
Brianne: Yeah. Like, I’m sorry but at this point, you don’t ask me to lift nothing. I will not fill up the ice machine. I will not lift something. I will not get anything for you. I’m going to sit here and look pretty and in pain because that’s basically where I’m at. That’s that’s my baseline, pretty and in pain because I will not exert myself to do anything if I don’t have to do it.
Teona: I’m okay with asking for help because I know I need it now. If my friends are here, I’ll be like, “Do you feel like grabbing that for me from up there?” Because if I do it I’m probably gonna fall, and that’s just the reality. And I love that I have a support group of friends that are just like, “Stop trying to do everything and sit down,” because I need someone to tell me that because I live alone. I’m used to having to do everything, so when people are around they’re just like, “You sit. We got this.” And my own dad, like… I remember one day he came over and cleaned for me, and he was just like, “You sit on the couch. I got this.” And he’s just cleaning around my house. 2020 has been both really hard and really good at the same time. Not really good. It’s been… It has had really great moments, but it’s been horrible at the same time. And that’s just… it’s like a weird push and pull kind of relationship because so much good did happen, and so much bad happened.
Teona: I’m just… I feel a lot more hopeful than I did before because I ran out of hope. I didn’t even want to entertain the idea of a diagnosis or getting assistance. I was trying to go for disability, but they told me I’d have to… I would only get $781 in benefits, and I could only make maximum of $1,280 before taxes. I get about $200 taken out of my check every two weeks. Realistically, that means I can only make a thousand dollars in a month, which means the same amount of money I was making at Chipotle. And I can’t do that because I can’t pay my bills off that money and $781 ain’t nothing.
Brianne: It doesn’t make the difference.
Teona: That’s rent. That is literally rent. Maybe part of a bill. Maybe. Depending on where you live or not even rent, depending on where you live.
Brianne: Right, not rent in a lot of cities, yeah.
Teona: There’s no point, and that’s the sucky part is that it’s so hard when you get asked, “When did you start being able to work?” And you have to tell them, “Technically I stopped being able to work a couple of years ago, but I still have bills to pay,” because they expect you… my mom put it into words perfectly. She’s like, “They expect someone to take care of you and pay for all your bills in the meantime and that’s not realistic.” My mom has a son. She has my brother. She can’t afford to pay for everything for me. I’m 23 years old. I’m five years out of the whole being a child and having my mom pay for everything for me willingly. Before she paid for some stuff, but now I’m officially completely independent from her, and I would literally just be a financial burden because it’s expensive being disabled. Nobody has the time to take me to all my appointments and pay for my bills and pay for groceries and make sure I eat and pay for my cats because my cats, at this point are a deal breaker. If anything says my cats can’t come, I’m not going to go because they’re the only thing keeping me together at this point because I live alone, and when things are bad, they’re in my face letting me know that they’re here for me. I can’t imagine going through all of this and not having my cats here because I wanted… I want a service dog, and it’s going to be a long time before I’m able to get one because the only options are to do it yourself, pay for training, or sit on a waiting list for like training and everything and it’s just like…
Brianne: It’s a lot of energy, a lot of time, or a lot of money. Yeah. Or all of them.
Teona: It’s too much. It’s like, literally everything regarding getting some kind of help when you’re disabled just seems so out of reach that you’re forced to do everything on your own. And then they have the audacity to ask you, “Well, why are you still working If you can’t work?” And it’s like, “Well, why am I still paying for rent if I can’t work?”
Teona: They won’t… my rent office doesn’t care that I’m disabled. They’re going to want their money on the first of the month. And I ain’t got no choice but to give them their money on the first of the month, or I’m going to get evicted. I didn’t even know that there was a time period where I could have applied for unemployment before my last job because I didn’t have any education on it. So I couldn’t show that I was unable to work at that time. I could have possibly filed for disability then, but I didn’t know.
Teona: So I had to… when I got back to working had to work, and that’s where the hard thing is, is that no matter what, we have to work. No matter what, we have to keep doing this because the world doesn’t stop just because you’re disabled. They are going to expect that you pay everything that you have to pay for. If you’re lucky you might get some leeway, but for the most part they don’t care. And they aren’t going to blink if they have to take something from you or kick you out because you have bills to pay and you didn’t pay it. And I can’t risk lowering my work hours and my money down to nothing on the off chance that maybe, just maybe they’ll get me disability. I’d rather push myself and work you know 35 hours a week and like try to get to a year of my job so I can get FMLA than sit around waiting for disability to come through, when even then it’s probably not going to do anything for me.
Brianne: And it’s so hard, partly because of the numbers, like you just said, it’s usually only a couple hundred dollars, and it’s definitely I think, usually under $800, I think in all States for SSI, and then SSDI… unless I have them backwards, SSDI is about work credit. So that one’s a little bit more fluctuating, but one of the things that just really gets to me, not like I’m the only one to talk about this, but we know with M.E and with EDS now, that diagnosis takes so long, so also the system like relies on diagnosis. You can’t be like, “Oh I’m undiagnosed, but I can’t work.” They’ll be like, “Yeah, right. That’s not a thing.” Even though it is.
Teona: That’s why I pushed so hard to get a diagnosis because I knew that no matter what, they’re not gonna care about me writing out my symptoms and life story. They’re looking for the diagnosis.
Brianne: Yeah. They have whatever system that they have for evaluating how disabling each condition should be, and that’s interesting…
Teona: It’s so arbitrary.
Brianne: Yeah it’s so arbitrary, and like, with M.E and EDS, I guess… as they’re kind of… they overlap so often, probably because they have like, a genetic relationship or whatever… risk factors, et cetera… the thing that you’re talking about is so common, I think, which is when people with fatigue like, “Yeah we can keep pushing.” It’s not the kind of impairment where I can’t do it; it’s the kind of impairment where I won’t be able to do it in the future if I keep pushing now. That kind of risk calculation is not built into, still, like, disability support services. And I would say true not just for government benefits, but like that’s true for most accommodation conversations. That’s true like all over, and it’s like, we know. The patient community and I would say probably most of the disability community is aware that like this is how these things actually go and these are the choices that we’re actually making, but like the reality is that most people with energy limiting conditions, hypothetically in some other utopia, like, would have a way better entire career if we could all like slow the fuck down as soon as we break down the first time. Like, if we all got to have, whatever that would look like, flex hours as soon as our body stopped working, we would be able to work longer. And I’m not even making the case that I think everyone should work forever, but like, in a world where things are just as productivity focused as they are right now, under capitalism, whatever, the reality of the math on this is that people would be productive longer if they could just take breaks. It’s so obvious and so… that makes me nuts, as someone who burnt my body out in my twenties.
Teona: Yeah and that’s what’s so frustrating because for example, with my job: I like my job, love my job. If I had the accommodation for when my body breaks down, I could get a break from it, take some, you know, days or hours and stuff, and then just jump right back in when I’m able to, I’d make so much money.
Brianne: Yeah, and like, relatively refreshed!
Teona: Yeah! Like, “Wow, body’s acting up. Let me go rest now, before it gets worse and feel better because I’ve rested or because I’ve went and relaxed and stuff or took time away from everything to unwind or…” For example, ideally, I’d personally just write for the rest of my life. If somebody were like, “Yeah I’ll pay you to write, but you don’t have to have a deadline, and we’ll pay you what you’re worth. Based off how you view your worth and not we view worth.” That’s very important. And, you know, “We respected and understood and accommodate your disability.” Perfect. I’d do so much writing from my bed. It’d be amazing. that’s no way shape or form realistic.
Brianne: Yeah, and it’s not well-supported by any business models that I am currently of, but so many of us are like, “How do we get there? What do we have to do?”
Teona: I’d love to get there. Life would be 10 times easier, but if I can’t get there, the least I would like is way more accommodations for work. So that when we don’t have a choice but to work, we don’t have to feel like we’re basically killing ourselves to do it. Before my apartment and before my new job, I felt like I was essentially taking years off my life every time I went to work because I put my body through so much and then I couldn’t recover. There was no recovery period. I had to go home, and I had to immediately clean, feed myself, take care of the cats, plan out, “Are we going to pay rent or a bill or are we going to eat?” Gotta make sure the cat stay fed above all things because they didn’t ask for this. Which means I’m probably not going to eat because I can’t afford it. There’s so much to cement that I had to manage because I couldn’t make enough money because I couldn’t push myself. I was at my limit, and my limit unfortunately didn’t match up with the limit for my bills. Like my limit’s down here and my like bills are feet taller than that, and I just… it’s so hard, and people… it’s so annoying seeing people say stuff like, “Oh people are just cheating the system or taking advantage.” And I’m just like “Do y’all know how hard it is to get disability?” I’m sorry. But I’ve never met a person who was genuinely faking it and being on disability because how would they have gotten there? At this point, you need a diagnosis. You need tons of evidence.
Brianne: And like, why? Cause like as we were just talking about like, by no means do I want to say that $800 is not a lot of money, obviously it’s a lot of money. Like if you owe someone $800 that’s a lot of money, but like the amount of like full work that would have to go in to conning that money from the government is not worth that money.
Teona: Honestly. It’s not like we’re suddenly getting a couple thousand dollars a month. If I got a couple thousand dollars a month, I’d be set. $3,000 a month in disability? I’m comfortable. I don’t have to push my… I don’t have to work. I can be disabled in peace, but no. They want to give me $781, and then they’re probably going to take a hundred or so out of that because you know they’re going to tax it. And then they’re gonna take a hundred some dollars out of it to go towards Medicaid or Medicare whichever one is it that comes with it when you’re on disability. You’re not getting enough to do much with outside of pay bills, and even then you’re probably gonna have some bills after that.
Brianne: Yeah if you are not disabled, there are easier ways to make $800 a month, which again, not to minimize how much money that is, but there are easier ways than faking a disability for life.
Teona: You have to put so much energy into faking a disability. I put so much energy into trying not to appear to disabled people in certain situations. I can’t imagine putting energy in, to that degree… it’s so much energy proving you’re disabled… to be faking the entire time and still get it? I’m not going to lie If you’re able to fake it to this point to get it, I want to know how you did it. What did you do? What did you say?
Brianne: You deserve it. Honestly? I’m not worried
Teona: Yeah like, they got it. Whatever they did, they did some finessing that disabled people can’t even do with all of our information. So somebody somewhere got some powers I don’t have. I might want to have a conversation with them to figure out, “Okay what did you do?”
Brianne: Yeah, “Tell me about the system.”
Teona: ”I got a little modicum of respect for you because I sure as hell can’t get it, and I got all these disabilities and all this evidence and all these notes from doctors and everything and they’re still denying me so… I just want to have a conversation. We’ll keep your identity private, but you know, let me know. What’d you do? Did you have someone on the inside?” Because it’s so damn hard. For no reason other than to keep disabled people from getting it, and I heard someone say that they expect you to die before you can get it. And that’s realistically how it is. They don’t want you to get disability, and another part of it, when you talk about how much money is actually given to you, they expect you to stay in subsidized housing. Which is another thing, as someone who grew up in subsidized housing, it’s hard getting into it. The wait lists are atrocious. I was trying to move to Baltimore five years ago. That wait list hasn’t opened up the entire time I’ve been trying to move to Baltimore to get into subsidized housing just to get evaluated for it. You can’t even apply because they’re like, “We don’t have any housing available.” And that’s so common. In places where there’s zero housing, especially with how gentrification is, you can’t get into these places, and it’s… your alternative is to stay in a regular apartment which means that that $781 they’re giving you? Gone. You’re going to pay for the rest of it out of your a thousand to twelve hundred dollars that you’re allowed to have. And it’s… the whole thing is rigged against you from the beginning.
Brianne: Yeah. Something that I think about a lot now because for me like mold was a big part of my problem…. has been repeatedly a big… like that was one of my triggers in terms of going from a regular person with some weird stuff to a person who was flat-out not operational, and like, that’s another part of it, is that environmental triggers in housing… we don’t even know about yet. It hasn’t been researched properly. I think most people have no idea… I had no idea for like the first two years probably that I lived in a moldy apartment. I wasn’t thinking about that. I didn’t think it would matter. I was just happy that I could afford it. It was cheap, in a city. It was a pretty nice apartment all things considered, but like, it had a moldy bathroom, and I thought that didn’t matter. But actually the discount on rent that I got on that apartment probably like compromised my health, maybe forever. That’s another thing that’s going on, and I know so many people who are in this situation where they’re like, “Yeah I think there might be mold in my housing. I think it might be playing a role, but like, what am I going to do about it? Like, I don’t even want to start the testing because I can’t act cause it’s expensive.” Later I ended up doing some pretty drastic stuff because of mold, but in my first apartment that had mold in the bathroom I was like, “Not thinking about it. What am I going to do? No point learning.” And that’s such a big problem with housing right now that’s mixed in really intensely with affordability and cost.
Teona: The house my mom and I stayed in when I was in… like, just out of high school, the subsidized housing, we had a mold problem, and it took… it was because that apartment was so humid. It held on to the humidity in the air because we’re… one, we were at the beach, and two, it was because of the way it was built. It was a brick house, and it was like… whatever moisture was there, stayed. And we used to have to give these a little dehumidifier things and put them everywhere, but realistically, it didn’t do much because the mold would keep coming back. Especially like, in areas where the pantry was or like, in certain areas of the home, mold was just such a problem. That’s how it is with subsidized affordable housing. That’s a big risk because first off, the houses are built cheaply, for the most part, which means that they aren’t going to come with all the things that will probably prevent the home from forming mold, which means the problem is going to be reoccurring in places where moisture buildup is like the bathroom or the kitchen, or if you have a laundry room, you know, places like that. So you take that, and then you take the fact that you can’t afford going anywhere else, and it’s like, “Only option I got is to sit here and watch them come and paint over it.”
Brianne: Yeah. Like, try not to think about it too much.
Teona: Yeah and it’s like, “Hmm I’ve been coughing a lot, but can’t really do anything. Can’t go anywhere.” What are you supposed to do but sit in it? And if you’re disabled and you managed to get on disability, and you get put in subsidized housing and that’s the situation you’re in, and that stuff triggers stuff in you, you don’t have a lot of options. You got to go on a wait list just to get to another place, and if you do, you’re probably going to deal with the same problem again. And it’s just… it’s so unfair, so are you supposed to manage that? What are you supposed to do but deal with it?
Brianne: It’s like a treadmill. Just like… running in place trying to keep going. It’s very difficult. Systems…
Brianne: So we’ve talked about so many things over the last couple of hours. Is there anything on your mind that we haven’t gotten to about chronic illness, disability, whatever?
Teona: If there is, my brain can’t conjure it up at the moment. I feel like the second I hit ‘end call,’ it’s gonna be like, “You know there’s some things that you and Brianne could’ve talked about.” And it’s like, “Yeah I’ll just tweet her.”
Brianne: I think that’s what always happens, is that every time, I’m like, “Is there anything else?” And people are like, “No, it’s been two hours, I think we’ve talked about everything.” And then we hang up, and then they’re like, “Oh, I should have talked about this.” And I’m like, “Don’t worry. There’s time. There’s always more.”
Teona: Yeah. And it’s like my thing is, I could talk all day. That’s my problem. So like I ramble about like everything and then be like, “Oh all these other things I could’ve talked about would’ve kept us on phone two more hours.”
Brianne: Yeah, I relate. Well thank you so much for taking the time to share your story with me today. I am excited to share it.
Teona: Thank you. I did not expect to be able to get in on one, and I cleared out my schedule for this cause I knew I kind to use a lot of energy here. And I was like, “If anyone’s going to get my energy it’s going to be her. I’m okay with it.”
Drew: Thank you for listening to episode 73 of No End In Sight! You can find Teona on Twitter and Instagram @tee_spoonie. They have a blog on their website teespoonie,com, and they are raising money for a service dog via GoFundMe. You can find me on twitter @fibrofuckboy and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on twitter and instagram @bennessb, and you can find many more conversations about chronic illness on twitter @RTsFromTheVoid. And don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, we’d be just as grateful if you left a podcast review on Apple Podcasts/iTunes. Thanks for listening.