08 Glaucoma + Inflamation-itis Things (episode page)
Description: On this week’s episode of the podcast, Beata talks about being an adoptee with no family health history to rely on, accessible transportation, her work with the NGO Glaucoma Eyes, and getting published in an anthology of adult adoptee stories. She was born in Poland with cataracts, developed glaucoma during childhood, and is now dealing with some autoimmune issues including Hashimoto’s disease.
Hey there and welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.
Nothing said on this show, or in any of it’s associated content should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck.
It’s been a rough week it seems, for everyone, all over the place. Through many sad and scary events the world over, we’ve all been reminded of just how tenuous our grip on life can be. I wish that there is something I could say about the events of this week that doesn’t feel patronizing, offensive, or ridiculous, but I certainly haven’t been able to come up with anything yet.
I’ve been hearing from a lot of people that they’re not doing so well health-wise at this time of year, and real talk: neither am I. Just about every autumn, my health declines quite a bit. I’m doing really not great right now, worse than I’ve felt in over a year, and have been reminded of just how isolating and scary this can be, especially when there’s no relief in sight. I learned last week that I’ve already lost two of my doctors, the two I need the most right now, and will be losing the rest of them when I have to switch to medicaid in January. This isn’t the end of the world, but after working so hard for so long to assemble a great team of compassionate and collaborative physicians, it’s quite scary to know i have to start all over again with a dramatically reduced pool of doctors.
I’ve also been hearing from people having insurance nightmares of their own, and tis the season for crying about health insurance. Here in the US, it’s open enrollment season, which means that everyone needs to choose their health insurance plan for the coming year. As you probably know, it’s a ridiculous system that we have. It is a system has been broken for a long time, continues to be very broken, and it’s the patients who get caught in the middle.
People have lots of ideas about what The Problem with our system is, but there is no ONE problem, it’s all a mess. Thanks to the Affordable Care Act, more people are insured than ever before, but coverage does not necessarily equal easy or affordable access to care. Many of the cost control measures built until the legislation were stripped by the active opposition to the law. They may not have worked, but we’ll never know, so the long trend of rising costs has continued to spiral so far out of control, I can’t help but laugh maniacally every time I look at a medical bill because they are just so absurd.
It’s not just the US that’s facing difficulties with our medical system. Massive cuts in Canada, especially in Ontario, have hurt everyone involved, leaving vulnerable patients in the lurch. In the UK, there is a movement to privatize their National Health System, which poses an existential threat to the care of millions. For refugees and areas affected by conflict, like Syria, people are unable to get access to basic medical care or medications, furthering the already horrific toll of that long and terrible war.
I can’t really say anything that might make you or me feel better about any of this, and whatever current healthcare nightmare you happen to be facing. All I can do is offer solidarity in a time where we’re all feeling quite raw and uncertain of what might happen next.
On this week’s episode of the podcast, I talk to Beata, who was adopted from Poland by a family from Buffalo, NY. She has vision impairment because she born with cataracts and developed glaucoma during childhood, both of which are conditions affecting eyesight. Beata is now dealing with some autoimmune issues including Hashimoto’s disease, a condition where the immune system attacks the Thyroid gland causing inflammation and interfering with its ability to produce thyroid hormones.
Beata is on the board of Glaucoma Eyes, a Non Governmental Organisation that offers Worldwide Patient Support to people who live with Glaucoma. They are working to raise awareness for glaucoma internationally, and supporting educational programs for patients, doctors and other medical staff.
I asked Beata to explain a bit about glaucoma and cataracts, and what it’s like to be a young person with an “Old People Disease.”
Beata’s interview was one of the earlier ones I did, and because she mentioned she had been waiting on some test results, I called her to follow up and see if she was able to get any more answers. That call is at the end of the episode, and we also talk about the recently published anthology of stories from adult adoptees called Flip the Script, which Beata was featured in.
If you’re new to the show, welcome. If you want more of In Sickness + In Health, you can find us in your podcast feeds, on insicknesspod.com, and on social media @insicknesspod. Please, rate and review us on iTunes, it helps other people find the show, and Let us know what you think of In Sickness + In Health so far, and I hope you enjoy the episode.
Thank you for listening to In Sickness + In Health. Check out the show notes for links to some of the stuff we talk about in this episode including a link to purchase Flip the Script, and more information about glaucoma and Beata’s other conditions. Subscribe and stay tuned for everything we have to come, and check out our Dysautonomia Series from our first week! Let us know what you’ve liked about the show so far. Please rate and review us on iTunes, which helps other people find the show, and tell your family, tell your friends, and tell your doctors!
And don’t forget to be excellent to yourselves and each other.