050: Jaelin & Natalie Palmer on Living with CRPS and Trigeminal Neuralgia
Uninvisible Pod with Lauren Freedman
Shownotes Transcript
Jaelin Palmer is a 25-year-old activist and organizer living with CRPS (complex regional pain syndrome, or reflex sympathetic dystrophy) and TN (trigeminal neuralgia). She was diagnosed with CRPS at 15, following a jaw surgery gone wrong; the TN diagnosis came much later, despite her extreme chronic facial pain. Her mother, Natalie, joins us in this special mother-daughter interview not only because she is Jaelin’s full-time caregiver, but also because we so value her perspective as the loved one of someone living with chronic invisible illness. Both women have gained and lost so much in the experience of living with and striving through chronic illness, and have a wealth of knowledge to share. Jaelin is a happy, social individual, committed to a number of causes – but chief in her interests is LGBTQIA inclusion and awareness (she and her sister McKenna founded the Yucaipa Rainbow Coalition), as well as chronic illness activism (especially with groups like Fight Like A Warrior). In their journeys, mother and daughter have learned what it means to be an advocate – both for oneself and for others – and sat down with Lauren to enlighten listeners with their message of hope, love, and strength.
**Tune in as Jaelin & Natalie share… **
that Jaelin had jaw surgery to fix an underbite – and it was this surgery that caused her TN and CRPS
Jaelin’s ambition to succeed and to learn: that she was in too much pain to finish high school, and had to transition quickly to home schooling in order to get her diploma
that both Jaelin and Natalie experienced medical trauma in having to explain Jaelin’s pain and constantly relive her story in the early days of her diagnosis and treatment – but they’ve learned how to better communicate with doctors since then
that at one stage in the process of diagnosis, one doctor made the outrageous recommendation that Jaelin (then 16 years old) lose weight to calm her jaw pain
that there are 50 million people in the US living with autoimmune disease – more than with cancer and heart disease combined
one of the main reasons autoimmune disease research is misunderstood and underfunded (and patients are often first referred to psychiatric care) – because the majority of people living with these illnesses are women
Jaelin’s acknowledgement that Natalie was “ferocious” in the push for her care
that Jaelin graduated magna cum laude from college, and would like to go to law school – but is limited by her illness
that pursuing healthcare with chronic illness is a full-time job
Natalie’s recommendation that adults teach their kids the process of participation in one’s health and insurance needs
the discovery that Jaelin’s jaw surgeon had knowingly damaged nerves in surgery – which left her with lifelong chronic pain – and she was beyond the statute of limitations to sue for malpractice
that Jaelin had a second surgery to improve her comfort levels
that Jaelin weaned herself from opioids as much as she could during a fellowship in Washington, DC
the importance of registering with university disability offices to take advantage of opportunities to reschedule tests, etc – which are a student right
why Jaelin is upfront in communication with professors and other figures of authority in her life
why CRPS and TN are both nicknamed “the suicide disease” – because both rank in pain above childbirth, and roughly 25% of patients take their lives because of the pain
that Jaelin had her gallbladder out, but didn’t even notice the pain because as it compared to her facial pain…the gallbladder was barely a blip
that Jaelin lives through moments of doubt, questioning her sanity AND her identity because of her chronic pain
that Jaelin has Type 2 TN on both sides of her face, and as such is not a candidate for microvascular decompression surgery
that Jaelin is currently seeking treatment with doctors at UCLA and at the Mayo Clinic
that Jaelin helped plan LA’s inaugural Autoimmune Walk, along with Barbara and Haley Ramm
that the first thing Jaelin does every day is check in with her online community
that Jaelin struggles to make ends meet because of her disabilities
tip tops not only for patients, but also for caregivers and loved ones of individuals living with chronic illness This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com)