Teona Studemire talks EDS, M.E., and public benefit programs.
TranscriptBrianne: I’m Brianne Benness. And this is No End in Sight. A podcast about life with chronic illness.
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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.
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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.
Teona: Yeah.
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.”
Brianne: Yep.
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.”
Brianne: Beighton
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…
Brianne: “Okay…”
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 sho
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