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From missing Thanksgiving and family parties to navigating the "reentry anxiety" of the holiday season, this episode explores the intentional boundaries Chelsea and their husband have set to protect their health while raising two "neuro-sparkly" children. It is a candid look at the intersection of parenting, disability, and the profound impact of simple acts of consideration from friends and community members.
🗝️Key Takeaways
- The High Stakes of Common Viruses: For those who are immune-compromised and chronically ill, a simple virus can result in weeks of total isolation and physical exhaustion.
- Adrenal Insufficiency & Steroid Stress: Chelsea details the "nightmare" of having to increase steroid intake to help their non-functioning pituitary gland fight infection, leading to intense physical and "ragey" symptoms.
- Medical PTSD Triggers: Being confined to bed due to illness can be deeply triggering for those with medical trauma, often mirroring the isolation of a difficult postpartum recovery.
- Leaning into the Village: Recovery requires a radical acceptance of help. Chelsea shares their journey of becoming better at asking for support from family and their husband for daily tasks they physically could not perform.
- Intentional Health Boundaries: Living as a chronically ill parent involves strict hygiene protocols, such as masking in specific settings, using hand sanitizer, and teaching kids about germ safety to limit exposure.
- The Impact of Consideration: Small gestures, like a friend proactively putting on a mask without being asked, can take a massive emotional weight off a chronically ill person's shoulders.
💬Sound Bites
- "A virus is a very different experience when you are immune-compromised... even the tiniest cold becomes this ridiculously long exile from my own life."
- "I had to up my steroids... which was its own nightmare of physical symptoms and ragey symptoms."
- "Anytime I am super sick and I can't leave my bed, it is incredibly triggering for me. I get flashbacks."
- "I'm still on day three of a horrible headache... since my pituitary tumor, I will get a migraine that'll usually last the day, then a lingering headache for three or four days."
- "When people take the initiative and don't get offended or don't even make it a thing... it takes a huge weight off my shoulders."
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Special Thanks to Steve Audy for the use of our theme song: Quiet Connection
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