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Teona Studemire talks EDS, M.E., and public benefit programs.

Transcript

Brianne: I’m Brianne Benness. And this is No End in Sight. A podcast about life with chronic illness.

[guitar riff]

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.

[guitar riff]

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 becom