73 – Teona

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