3. Lyme Disease: How to Self-Care with a Demanding Job

Halley Feiffer

 

Lyme disease:

 

Halley Feiffer ignored her symptoms until they were drastically affecting her lifestyle. It was backstage in the middle of a performance, when she realized that she couldn’t rely on booking effortless jobs and she needed to go to the doctor. Through treating Lyme and strategically monitoring her self-care, today Halley manages a jam-packed schedule and demanding atmospheres. Find out how in this episode!

More about Halley:

Halley Feiffer is a bi-coastal actress and writer. Currently she is writing on “Kidding,” the upcoming Showtime series starring Jim Carrey. Halley was diagnosed with Lyme disease three years ago in New York City.

Listen to this episode if you are especially interested in:

  • How to keep working with your symptoms!
  • How to self-care with a demanding job
  • How to manage stress
  • Dr. Richard Horowitz
  • Antibiotics vs. holistic treatment
  • Lyme diet options

Happy listening!

Budd Chiari: How to Live Well with this Rare Liver Disease

Nick Smoke

Budd Chiari:

Nick Smoke’s life was overwhelmingly altered the day he found out he had a rare and life-threatening liver disease called Budd Chiari. At 24 years old, he was a working actor with a flourishing career and no reason to be seriously worried about his health —he didn’t drink or smoke, he took good care of himself, and had already come through a lot in life; It seemed like he could finally relax. The next couple years of his life tested him physically, emotionally, and mentally and, today, he sits on the other side: Back to work, in love, and excited for what comes next. Of course what happened in between is a story not to be missed—find out how Nick got better, and how he lives today so he can remain as symptom-free as possible.

More about Nick:

Nick Smoke is a working actor in Los Angeles. You can find him on instagram @mrnickys, on Twitter @nickysmoke and you can follow his Tumblr blog, Too Young to be Here. If you are a person dealing with Budd Chiari, you can direct message Nick on any of these platforms.

 Listen to this episode if you are especially interested in:

  • Veganism and how it helped Nick
  • California doctors specializing in this field
  • Transplant listing and surgeries
  • How to be a friend/ family member to someone in the throes of illness
  • Depression and how to move through it.

Give a listen and comment below or on any of your podcast platforms!

xo

 

1. Lyme Disease: How to Get Properly Tested and Other Healing Gems

 

Jill Skibba

After two decades of harsh and debilitating symptoms, Jill Skibba finally got the Lyme testing she had been begging doctors for all along. The test came back lit up like a Christmas tree: Positive and then some. Find out what test was taken to get the reliable results, what Jill did/does to get better, and her amazing advice to fellow Lyme disease sufferers.

Jill Skibba is an aesthetician and microblading expert residing in Los Angeles. You can find her on Instagram @jill_skibba and you can read more about her journey with Lyme disease here.

 

Listen to this episode if you are especially interested in:

  • Lyme insomnia
  • Tips for traveling and adventure while sick
  • Lyme symptoms
  • California doctors
  • How to heal when your body rejects all natural solutions
  • How to be a good friend to people in the throes of illness

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Me, Too: Extended

Me Too

I saw the Facebook statuses—my newsfeed was full of brave women coming forward, openly talking about personal experiences with sexual harassment… #metoo, and then some. And it made me—me the “healing out loud” girl—uncomfortable. What in the fuck? I couldn’t believe that this patriarchy-conditioned part of me that I thought was dead was suddenly awake for a feeding. In my upbringing, I was trained to hear “sexual harassment” and immediately follow the words with “always the woman’s fault.” That means I have blamed myself for countless horrifying interactions. I didn’t claim victim; I have seen myself as the perp. The 2016 election started to break down those old ideas I had; I started to see misogyny and sexual abuse more clearly and honestly, but I still sat in my self-made jail with a head full of regret and shame for all of the sexual harassment I thought I caused myself. But ALL of these women were writing #metoo with personal stories included, armed with the keys to my handcuffs, ready to show me the escape route if I wanted to be free. I did want to be free. I had been standing atop the cliff, peering over the edge for hours thinking, jump jump jump, it will feel good. And in a sudden burst of willingness, I went for it:

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Being Unproductive is Underrated

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“Kryptonite” by Three Doors Down was playing as a crowd pleaser in-between sets at a Maui music venue. It was 2011—too many years since Kryptonite had been popular. But that’s typical of time-lagging-feet-dragging island life. I rolled my eyes because I was an artsy snob from New York City,  but secretly I loved the song.  If I go crazy then would you still call me Superman? If I’m a blah blah blah (I don’t know what they’re saying here) would you still be there holding my hand? In my hidden, honest depths, I sang along nostalgic for high school.

In a moment of courage, I blurted, “I know this song is awful, but I kind of love it.”

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Growing out of the Ashes

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We left early in the morning for Sequoia National Park last Tuesday.  I woke up excited for an adventure—a new place, lots of rocks, big trees, and people I love to share life with. I showered, put on in-the-car clothes, double-checked my suitcase for hiking boots, warm socks, an iPhone charger, and sunscreen. We had booked the trip a couple of months prior—my uncle and I debated dates and national parks on the Facebook messenger app ( I’ve found it secretly amusing for years that Facebook is our primary form of communication). When he initially asked if I would be able to join him and my Aunt in Sequoia, an intoxicating joy shot through me— an appreciation for a healthy life that I can’t imagine will ever find its way to evaporation.

“I CAN. ”

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The Curse of Knowing how Healthy Feels

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I was observing my surroundings. How did I get here? I was lying on a flat table with one needle in my right arm and one in my left—the one in my right drawing dark, heavy, apathetic blood  from my sick body so it could pool in a machine where it got an expensive make-over,  the one in my left  feeding me an upgraded, strawberry-like vibrant blood. My dear friend sat next to me with a book she was reading aloud to keep me calm. Two innocent-faced,  pretty nurses that didn’t speak much English were nearby watching multiple patients. We were in Bali, Indonesia. My eyes grew fainter, my body more restless as though something inside of it was dying and fighting for life. The needles hurt, the treatment exhausted me,  I was afraid. Across from me was another woman receiving the same treatment but with no friend sitting at her bedside. How do you do this alone?  We struck up a conversation because it was weird to be receiving such an intimate treatment in the same room and not say a few words like, “hello. funny to see you here.” or something. As it turned out, we were both in the grips of Lyme disease.

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Bill Nye Saves the World?

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That is a mighty declaration Bill Nye makes in his new Netflix show’s title, isn’t it? Especially since his “entertaining” op-ed-esque message in episode two on alternative medicine is mostly destructive. Normally, I wouldn’t be interested in watching anyone try to debunk alternative medical treatments because it is just a way for me to get unproductively angry, further taxing my adrenal glands. But on a particularly boring Saturday night, I got a text from a friend, “Bill Nye has a new show on Netflix, episode 2 is on alternative medicine. Check it out—some good stuff.” We can call this friend (who I love dearly) a world-class instigator. I was already mad because considering his kitschy name—”the science guy”—I assumed it would be very anti-anything-that-isn’t -Western medicine. But masochism and feistiness won: I watched. The episode far exceeded my expectations: I was left more angry than I imagined was possible by a short 30-minute segment. I wasn’t feeling personally offended that Mr. Nye disagrees with anything slightly to the left, I was angry at the much larger effect is has on the mysteriously sick population to use your platform to sell ideas that could potentially be harmful. In an effort to turn the unproductive anger into something productive, I would like to do a little debunking myself.

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On Mucus, Urine, and Peace

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Mucus:

I’m home sick—”normal” sick. I have plump yellow and green stuff building up, breaking up, and making its way out. The “normal- sick” sensation remains one to rejoice over. I didn’t experience this for a couple of years—something about Lyme making it impossible for my immune system to work enough to fight common infection—I don’t get it. But what I DO get is that yellow stuff equals normal infection and that’s the kinda thing I’m after. So, hooray, right? Well, not quite.

A couple of weeks ago, I received an emergency phone call from my immunologist. I’m on Medi-cal. For the most part, Medi-cal doctors do not emergency- phone- call me—I’m lucky if they know who I am, can find my files, or call me back after I leave a 911 message. It’s been one of the most frustrating things about being sick: bad doctors, poor treatment. But as the most unpleasant of pleasant surprises, a couple of weeks ago, I got two emergency phone calls, one after the other, “Jacqueline, we need you to come in first thing in the morning to review your recent blood work and get the process started for the IVIG.It’s very important we get going.” I know what my numbers are (I’ve been following them closely and consistently telling the doctor that I need to get started on the IVIG) but still the phone call scared me. It must be bad if the doctor is going out of his way to call, I thought. 

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I am Lonely; I am Loved

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Throughout illness, I could not simply or efficiently answer the question I was so often presented with: “how are you?” I’m sure the answer seemed like an obvious, “not good.” To  the outside eye— I was undeniably amidst a shipwreck. I was skinny and pale and frail and depressed and being told there was probably no way out.  But “not good” didn’t resonate—it wasn’t true. The experience of being sick  felt (feels/felt/feels) dynamic.  I was learning indispensable lessons. I was developing as a human, deepening as a spirit and as a creative. I was gaining a wealth of knowledge and a sea of love and compassion. How could I be miserable about such a beautiful makeover?  I was very hopeful—always, almost painfully hopeful. I once read that “hope is the opiate for the truly hopeless.” I wondered if that was me. I still wonder if that is me. Maybe it is, but it feels more true to say that it has been light and dark all at once. All of my life, maybe—I have felt the lightness in equal proportion to the darkness. Amongst these monumental inconsistencies was the desperate loneliness I felt while absorbing more love than I even knew existed. A love not only from my fellows but also from myself. But what brings me to this post is not necessarily the reflection of the past (although, I am very much reflecting) but the feeling I have presently: Why after getting so much healthier do I still sometimes feel so completely heartbreakingly alone?

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