5. How to use Energy Healing to Get Well

Emily Wallace

Energy Healing

Have you wondered just what energy healing is? All of this “woo-woo” stuff gaining traction in 2017? (Especially here in Los Angeles.) Learn about shamanism, reiki, and other weird but magical things in this episode from two unlikely women.

Emily Wallace

“Once I committed to my emotional, mental, spiritual health that’s when I started to thrive” -Emily Wallace

Emily is a NYC based Intuitive Energy Healing Practitioner and Shamanic Reiki Master Teacher. After many years of battling chronic Lyme disease—visiting the hospital, bound to bed, not working, cared for at home by her parents—Emily found her way to 75% through antibiotics and various herbs and supplements. Desperate to do more than merely survive, Emily found energy healing. She was an unlikely client, poking fun at the whole thing. But, to her surprise, it worked. After surrendering to this modality she truly healed and stopped hearing from her symptoms. Today, Emily is thriving at 100% and, after getting certified at the Omega Institute, she has turned her good fortune into a passion for helping others using her own energy work. She is the founder of www.lightheartedhealingnyc.com

To book appointments with Emily, please see above link or visit her on social media @lightheartedhealingnyc

Listen to this episode if you are especially interested in:

  • Lyme disease
  • Herxing
  • How healing the emotional, physical, and spiritual helps us heal the physical
  • Holistic healing—using Western and Eastern modalities
  • What Shaminism is
  • What Reiki is
  • What Energy Healing is
  • Why it’s important to track your symptoms
  • How to love your Lyme away
  • Awesome self-care tricks
  • Love languages
  • More on how I quit coffee

Resources mentioned in episode:

Happy listening!

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Why I’m Matcha Obsessed

 

It’s all of the buzz right now: We are experiencing a bit of obnoxious “matcha madness” in Los Angeles,  and I’m joining in on the trend. But I’m hoping that as an ex-coffee junkie, my message is more palatable for the masses. Are you confused about what matcha is, WHY matcha is, and how the hell to make it? Allow me to explain..

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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!

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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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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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Treating Anxiety, Part III: Lyme disease

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“I just have a deep sense, a deep inner-knowing, that I am safe in this world now,” I told my mother one day in early 2013. It was true. For a girl who seriously suffered from panic attacks and PTSD, I had gotten so far in life.  I had worked through my issues very seriously, utilizing everything from medication to meditation, and it was all proving worth it.  Life’s anxiety inducing situations rarely spun me into a panic— deep down I could feel that the Universe was my ally, not my enemy. My risk-taking, fear-facing, and spirit-searching had left me with (what seemed like) an excess of emotional and physical freedom. And I attached to that freedom like it was my identity,  endlessly exploring my options, hopping the fences that said “no entry,”  and following my heart’s desire to go to the parts of the Earth that were untouched. I didn’t want to walk away from this life unscarred, untouched and inexperienced. In an effort to affirm this preconceived notion of myself, I took a camera man and  got my photos taken while rolling around in the dirt as an expression of my free-spirt. This attachment to identity and proving myself…it got me sick. How ironic that, in an attempt to solidify myself into one small box called “free-spirit,”  I got bit by a tick, I contracted Lyme disease from the tick,  and everything I thought I knew about myself violently unraveled.  It was terrifying. That “sense of safety” I had confidently chatted about to my mother months earlier was tested and, as it turns out, fear is a whole different beast when it’s NOT irrational. But it had to be faced and overcome because if I had acted from fear when it came to healing from Lyme disease, I would have died.

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Fall Down, Get Up, Repeat.

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Ideally, I would wake up at 7 am everyday and immediately scoop a fresh wad of coconut oil into my mouth for fifteen minutes of oil pulling. After spitting out the freshly swirled toxins, I’d down 16 oz. of fresh celery juice. Then I’d use green tea to get my caffeine buzz on, journal, pray, and meditate. Around 8:30 am, I’d  start responding to emails and writing. I’d make my morning smoothie around 9:30, do more work, eventually get to a yoga class, make a raw salad for lunch, take an hour to rest, hit an infrared sauna or acupuncture, get some joyful activity in like socializing or dancing, and end my night with a healthy ,balanced meal, my necessary supplements, powdered magnesium, and red root tea. I’d then zap with my TENS machine and be in bed with a delicious story by 10 pm to read for thirty minutes before I passed out, benefitting from a solid 8 or 9 hours of perfect rest. IDEALLY. Sounds overwhelming right? So perfect it’s jarring. That’s why it’s an ideal. Because right now I’m sitting in this cafe writing and eating french fries. I woke up at a lagging 9:30 am,  oil pulled for ten semi-bearable minutes, drank coconut water, drank a couple of cups of coffee (instead of the more advantageous tea), responded to emails, made my smoothie by 11:30 am,and got out of the house— not to do yoga but to work. Also, I forgot my supplements at home. Eh, oh well.

I am imperfect. At everything. Including healing from Lyme disease. A shorter way to get the point across is to say, “I am human.” But I have found that statement to be ineffective; we need specific examples in order to actually believe that other people are just as human as we are. Or I do, anyway. I’ve always felt a little paranoid that I was missing some very important piece of information about this whole life thing— especially the whole healing from illness thing. Like other people had the rules—the user manual, the directions—and I didn’t. I would often get advice from other women—people who had previously suffered from Lyme—and I used their advice as an opportunity to beat myself up. Everyone was doing it better than me! “Your” diet was better than mine (or at least you were more disciplined about it), “you” were a better meditator, you saw the “right” doctors, took the “right” herbs, did the “right” research, spent money on the “right” things, you drank better water, had a better air purifier, did the “right” energy work, etc.  I thought I was bad at being sick (and “you were good at it??)  I cried every single day even though I knew it was harmful to my central nervous system. I cried every single day. And I thought maybe if I could just stop crying, I’d be doing it right.  I looked at people who seemed to hold it together—was that the right way, I wondered? I looked at people who worked serious jobs—was it a more serious job I needed? I looked at people who took two years off of work—did I need to take off? It was an endless mind-fuck. And now people are looking at me through sick eyes and wondering some of the same things: what does she do that I am not doing? She’s better at it than I am. I can’t be as disciplined as her. What’s her diet? Her protocol? on and on.. I’ve heard  you say these things and I’m here to tell you all about how I fuck up.

It’s important for me to write this as a wellness advocate— as a person who preaches a certain diet and lifestyle—to let you know, that I fall short a lot of the time. We cannot all be Kris Carr or Louise Hay. I hold myself to pretty high standards as you saw in my “ideal day.” Some practices have just become habit for me—no questions asked. And other practices—the ones that have less severe consequences— I have to work hard at. And some things, I’m just waiting on the willingness to carry out (like quitting coffee). The most important thing is that when I do fall off of the horse, I get back on. And that I get back on quickly. One of my dear friends once told me, “there’s only one rule. The rule is that you never, under any circumstance, beat yourself up.” That’s the rule I carry with me. It makes it much easier to get back up if I’m not whipping myself into a state of unrelenting weakness, forcing myself to stay down.

Two weeks ago, I was in Hawaii—my first vacation in three years. I took the vacation thing to heart. I ate all wrong, consuming more dairy and gluten than I’ve had in at least a year. I over did it physically, doing long hikes without shoes/water, and I didn’t get enough sleep. Oops. A few days after getting back to LA and trying to get back into my healthy groove, it was my birthday. Again, I bailed on my raw afternoon salad, I ate sweets that night, and instead of prayer and meditation, I spent the whole morning crying. Then it was Thanksgiving and, again, I “cheated” on my diet eating some extra desserts because… it’s the holidays!

It’s true. It’s a very hard time of year to eat a mostly-vegan, gluten-free diet. So, I fucked up a little. Every single day, I fuck up a little. Either I eat something a little off of the perfection I’m going for, I drink too much coffee, I forget to exercise or I don’t rest enough. It is challenging to fit it all into one day and have a job and live with any bit of flexibility. So, I don’t. But I do always wake up with the intention to try. I am always willing to get back on the horse when I fall off. My inner dialogue after whatever poor choice I made is something like this, Ok, that didn’t feel great. What’s next? Should I maybe consider doing it differently next time? Should I drink some detox tea or hit a yoga class? Or do something else that makes me feel good now? It’s OK. It happens.  If I don’t beat myself up then I have the space to compose a solution. So, let’s be real: you’re probably going to slip up this holiday season and abandon some of your custom self-care practices. What do you do then? Keep going, be kind to yourself, allow humanness and try again. And please know that all of us—all of us—are fucking up, too.

With fun and love,

Jackie

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The Power of Passionate Living

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Fuck the power of positive thinking. Spirit is far superior to the brain.

“Show me how you fight.”

“Show me how you live.”

“Show me who the fuck you are!”

– Aaron Eckhart in “Bleed for This,” the new Ben Younger biopic based on the life of boxer, Vinny Pazienza.

Do you know about Vinny Pazienza? Or maybe you know him better as the Pazmanian devil?  Don’t feel bad if you’re drawing a blank. I had never even heard his name before I went to the screening of “Bleed for This” last week. Of course I didn’t know his name—I didn’t even know the World Series were presently happening until I called a friend last night and she was like, “can I call you back. I’m watching the World Series.” And I wondered who was playing but forgot to google it because I just really don’t care. So it’s no shock that I didn’t know about the life of a pro boxer from the 90’s.

Vinny Pazienza is known to have the greatest comeback in boxing history. In 1991, on the heels of great success, a grave car accident left him with a broken neck. Doctors gave him the unsettling news that he may never walk again and that the boxing ring was undoubtedly only a part of his history—not his future. He wouldn’t have it. Fueled by fierce determination to fight again, Pazienza passed on spinal fusion surgery and opted to be fit with a halo—a medical device screwed (literally) into his head for a few months so his upper body would remain entirely still while his bones mended. The halo was a risk; spinal fusion would guarantee a future that involved full mobility while the halo simultaneously put him at risk to never walk again BUT if it worked, he’d have a shot at the ring. His friends, family and doctors saw him as delusional—all were confident that he would never fight again. Ignoring the doctor’s orders, Vinny secretly trained while inside of the halo—an act that is incredibly dangerous considering that one misstep—one bump or fall— could push the screws through his skull impacting his brain. He had a shitload of passion and determination. He needed to fight, he needed back in the ring—nothing would deter him from getting well. Indeed, he returned to the ring within a year and won his first fight back. It was a title win… he got one of those big belts.

In the movie, the bloody  story is supplemented with inspiring music and montages, ramping up the audience to get busy living their own life with an equal amount of passion and perseverance. Music and montages can make the most horrific experiences seem almost desirable, can’t they? Life isn’t like that. I’m sure it was an incredibly challenging year for him—I’m sure it SUCKED. But  he had a goal, and he had a fervor and zeal that kept him moving toward that goal— that kept his cells bursting with energy. He was not “thinking positively,” his spirit was at work. And THAT gets my rocks off.

The ecstasy I felt watching Vinny conquer his injury reminded me of “Meru.” Do you know about Meru? Meru is a Himalayan mountain with a summit at 21,850 feet known to some as the new Everest—in fact, it’s technically a harder climb with its icy vertical faces. The first completed ascent was made in 2011 by a team of three pro- climbers—Jimmy Chin, Conrad Anker, and Renan Ozturk. It was their second attempt as a team.In 2008, the three gave it an honest go but they made the calculated decision to descend before triumph due to dangerous weather conditions. Chin, Anker, and Ozturk were determined to reach Meru’s summit to spite the painful conditions, and after a couple of years, they decided to play with mother nature at her most violent…again. This time, they had hard-earned knowledge of the mountain and they were set to succeed. But, five months before their planned ascent, Ozturk had a skiing accident so brutal that it has continued to be referred to as”near-fatal.” His vertebrae were shattered, he had a cranial fracture, and was facing a stark future.

Five months later, he climbed Meru with Chin and Anker and made summit—a task that verges on inhumane. Just in case climbing the mountain twice wasn’t enough, they also filmed and completed a beautiful documentary called—wait for it— Meru. Like Pazienza, Ozturk was determined, dedicated, and full of life- force-passion—nothing would stop him and nothing did. He had a full recovery and continues to climb today. How the fuck?  Thankfully, you don’t need to have a passion for fighitng or climbing a mountain. You don’t need to “live on the edge” to know what I’m talking about.

When I was first diagnosed with Lyme, I KNEW I would beat it. I wouldn’t live with it. I wouldn’t be a person that “managed symptoms.” I imagine it was the same way Pazienza and Ozturk looked  their fate dead in the eye and said “no.” I had no choice. I loved life too much to be inhibited by an illness. I was too determined to experience the abundant juice and zest. I refused to suck on a dry orange. But then I got sicker, and it got scarier, and I got more and more beaten down and worried that maybe I didn’t have what I needed to beat it. And in those moments, I needed to remember two things. I needed to remember that *some things* are beyond my control. Let me be very clear. I know people who were not as lucky as Ozturk and Pazienza.  I know the people who are stuck in wheelchairs for life because of freak accidents. People that are not actively choosing to put themselves in danger, die or end up paralyzed. It’s “unfair” and I am in no way suggesting that if those friends of mine had a little more determination and passion, they would reverse their condition. NOPE. I believe that certain things are beyond our control. I’m not a monster. I needed to have compassion for myself and my reality BUT I also needed to remember the stories that prove the impossible IS possible. Lyme IS curable. I needed to remember that healing could happen even when the doctor (a human being with an MD that makes mistakes all of the time) swears it can’t. I needed to see the people who were hit with the “irreversible” obstacles, REVERSE them. And that includes all of the people who are in a wheelchair AND living their best lives. In fact, that’s even fucking cooler.

About one year into my illness, I was crying on the phone with a friend— a friend who had a complete recovery from Lyme. Crying about how sick I felt, about how lost and alone I was, about how weak I was, how ugly and depressed I had become, and how completely terrified I was. I was pacing back and forth in my bedroom fueled by anxiety. She wouldn’t listen to my complaints or my symptoms. She kept redirecting my attention to my heart. “You need to get in touch with the most powerful part of yourself. Think back and remember a time where you felt the most powerful. Think about how you felt before you got on stage for the first time or something..I’m sure you have something.” I stopped pacing. I did.I felt a surge of energy boil in my core and overflow into the rest of my cells—my fire.

I was in the fourth grade. I was uncool, becoming more timid by the day, and a complete liar in an effort to make friends. I felt more and more ashamed of who I was on a daily basis. Was it my father’s abuse catching up to me, was it the school I was in, the cruel kids I was surrounded by? How had I gone from an entirely confident and optimistic kid to one that profusely sweat and blushed with embarrassment at the sight of herself? I sat upright in the school auditorium waiting for my name to be called: I was signed up to perform for the Storytelling contest that day in front of my whole grade. I had been practicing, “The Three Billy Goats Gruff” with my mother, and I felt READY. I didn’t know I wanted to be an actor yet. Looking back, I don’t know why I was so excited, so ready, so talented. I just was. The teacher in charge called my name and I walked confidently up to stage. I was handed a microphone, I turned on my heels to look out at my peers and something happened. They couldn’t touch me. I was free. I was lit up and ready to explode. And  I did. I was brilliant and I knew it. I held the audience captive—even the girls who would have loved to hate me— they couldn’t. I sparkled through my last line and figuratively dropped the fucking mic. I wasn’t surprised that I won—I knew I would. THAT power—the kind I had before my brain knew *too much* about life.

I tapped into the power I felt when I auditioned for Fiorello H. LaGuardia High School—the steadfast confidence and the surety that I WOULD get accepted. I was 13 and the audition process was a day long—performing  monologues, improv,  interviews, memorization tests. I walked into one interview room that had wall-to-wall mirrors in it, and I eyed myself sweeping across the floor. My back was straight, my heart was full, and I was being PULLED forward. I wasn’t pushing or forcing. I was letting passion carry me.  I did get accepted and within one year everything took a nose dive. My brain became too active, my father started using drugs, I was distracted by boys, I hated myself,  and self-medicating was the only solution. Brene Brown says we can’t selectively numb. We can’t. As I numbed my dark thoughts, I also numbed all of my passion until I was left empty.

By 19 years old,  I had cleaned up my act and started thawing out. My passionate light was burning again and melting away all of the icy stuff, but I never fully recovered. I still knew too much—I still thought too much. I used my brain to outsmart my humanity forgetting that while my heart might be where the scary feelings are, it’s also where my power is. When I got sick, I needed my spirit more than ever. I needed to get out of my own way, shut the thoughts down. I needed to tap into the part of me that shouted  “I AM CAPABLE OF ANYTHING. I’VE GOT THIS.” I started closing my eyes and remembering that pure feeling in my body and every time I tapped into that same power I felt at 9 and 13, I felt brighter and lighter and stronger and way more capable of accessing full health. It’s no easy feat when you can barely find the energy to get out of bed, let alone the PASSION to get well, but if I could just tap into it every now and then, if I could just find  the surge to keep going then I’d keep going and slowly but surely… I went.

I love being alive. There is so much sweetness, so much power in this life and I want IN. I want in. I use that same passion, the same drive, the same need that Ozturk used to get up Meru and that Pazienza used to get in the ring, to experience this life free from illness. The same fire I used to mount stage at nine years old, and the same fire that fueled my admission into LaGuardia is what keeps me going—I am determined to live my best life. While I am about 1,000 times better than I was, I am not always free from illness and pain (and I highly doubt that Ozturk and Pazienza are free from pain). I woke up today exhausted, with pain in my joints and sore feet. I’m not going to run a marathon today (or ever because I have no desire to), I’m not even going to do yoga today. But I have two choices: To obsess over my pain and my fatigue, beating myself into a deeper darkness, OR to take a little trip into my lively spirit and let it do the steering. I got out of bed, I drank a green juice, and I got to the coffee shop to do some writing. I’m in warrior training. It’s more hardcore than surviving Meru or getting my nose broken for some big old belt. I’m in training for mind, body, spirit thriving and  thinking has nothing to do with it. It’s pure fucking spirit. It’s heart. And all of us have it.

With fun!

Jackie

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The Symptoms, Part II: Physical

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The symptoms! Everybody wants to talk about the symptoms. I view healing as a rhombicosidodecahedron— a shape with 120 edges. There seem to be endless tools/ sides and alley ways— all need to be used.”Symptom-bonding” is one very small (albeit necessary) part , but if we get stuck there too long then we miss the 119 other aspects of healing.  At some point, when I started taking note of the things that zapped my energy vs. the things that gave me energy, I noticed that talking/obsessively thinking about my symptoms was actually a ZAPPER. Trying to “figure it out” made me more sick and more confused. Every little sensation I experienced sent me on a panicked google spree, zapping my energy and ruining my day. Once I learned the hard way, I took a different approach: Instead of googling (and almost never finding anything helpful) I would take a nap, eat some celery, meditate, go to an infrared sauna, laughed out loud at something, or do any number of things that actually took me one step closer to wellness.  I stopped talking about my symptoms for the most part, and got busy doing things that brought me joy and wellness,  but that doesn’t mean that symptom talk  is not a crucial part of the road to wellness. At first, I needed to feel heard, understood, and validated— especially with an illness as elusive as Lyme disease.

I, like many people with Lyme, initially got stuck in symptom research -mania. Of course I did. I was trying desperately to figure out what was happening to me, to gain some sort of control over my body, and I was questioning whether or not I even HAD Lyme disease thanks to the doctors around the world that claim Lyme is not real. I have had doctors look at my POSITIVE Lyme blood tests, hear my symptoms and say, “it’s not real,” or, “I don’t like Igenex so I don’t count them,” or, “Lyme is treated with antibiotics. If you took antibiotics then you have post Lyme disease which isn’t really Lyme disease.” And to all of those MD’s I have said, “So then what do you propose I have?” Only to see raised eyebrows, shrugged shoulders, and a confused response of, “well I don’t know. You’re an interesting case.”  COOL. It’s no wonder I  questioned myself and my symptoms.  It’s only natural to become hyper focused on your “condition” when the world at large seems to resist it. You start googling, looking for validation, looking for a solution and asking any fellow Lyme sufferer—”Did you have joint pain, heart palpitations, trouble breathing, trouble walking, seizures, etc.” Becoming  a symptom- fanatic happens in an effort to save our own lives.

At Wellness Companions we work with newly sick people all of the time that want to dive right into symptom-bonding. We get it: the gratification of someone else understanding what you feel, validating what you feel, confirming that you’re not crazy, AND giving you hope that it can/does/will get better is indispensable—especially  in the beginning stages of illness. And, yes, it’s extra important when most people in your life probably couldn’t begin to understand what you’re feeling. I got more and more angry the more I tried to describe what I was feeling to others. They didn’t get it, they’ll never get it—how could I expect them to? But I get it and I’m here to tell you: You HAVE the symptoms, you’re not making them up, they are likely Lyme disease symptoms, you can trust yourself, and I suggest you take your power back and get busy doing things and talking about things that actually make you feel better! Trust me, it works.

I’ve decided to list off and describe my main symptoms, list some solutions I found for them, and leave it here for anyone who might need just a little reassurance that what they’re feeling is entirely “normal.”  But I have one request: I urge anyone who is chronically ill to shift attention from the symptoms to radical self-care as often as possible. Because I want to see you thrive. And I want to hear your stories about getting well. I am not suffering from many of the below symptoms anymore, but the more well I got, the more I realized I wasn’t making any of it up and the more respect I had for what I went through and how the bacteria ravaged my body. I’d love for this post to be a space where folks can share their symptoms and solutions—feel free to comment below. In the often isolating word of illness, it’s so important to not feel alone.

That “flu” feeling: You know the malaise, the aches, and the sore throat that hit the day before you get the flu? Yeah, I lived with that on and off for a couple of years. I had it early on in my illness, and I kept convincing myself that it was just a very weird cold. I wish I had stopped treating it like a cold and started treating it like Lyme disease. Solutions: REST, Neti pot, infrared sauna.

Extreme fatigue and weakness: Lyme made me hella tired. More tired than I had ever been—more tired than I thought was humanly possible. There were days when I couldn’t hold my head up. There were days where the stairs were too hard. I was too weak. Extraordinarily weak.Driving was scary and I had to pull over more than once to take breaks. Getting dressed was a chore, and I sat down in the shower. My eyes burned, my face hurt. My voice was weak. Cooking for myself was difficult. I was too weak to hold a baby, to carry a grocery bag, or to …smile. Everyday tasks became unreasonably difficult. It’s  a very “normal” reaction to Lyme and, yes, I thought I was making it up. Please save yourself from that torture— you’re not making it up. What helped: RESTING, acceptance, prayer, meditation, ozone therapy, IVIG, herbal supplements, BIE, acupuncture, infrared saunas. quality diet. 

Insomnia: The Devil’s work. I’d stay awake for 50 hours straight, and when I did sleep, it was rare to get more than 3 hours in a row— I tossed and turned, wept in pain, thrashed out of frustration, and then got up and tried to survive another day.  I tried everything: Exercise, no caffeine, massage, meditation, every natural supplement you could imagine, baths, candles, movies, reading, whale fucking music and the list goes on. I tried Trazadone which made me suicidal and Kolonipin which had equally damaging effects.I really am so sorry if you’re suffering through this. It got better for me, and I believe it will get better for you too.  What ended up working: Ambien worked OK, Valium was better, and a natural supplement called Tranquil Sleep from Natural Factors, inner-child work, breath work. 

Joint pain: It sucks to have arthritic pain. I spent many nights icing my knees and heating my hips. My joint pain moved through my body—it could be there one second and gone the next. It was stabbing and awful. Sometimes, my wrists got it, my fingers, my toes and ankles, but my knees took the hardest hit. I’m sending love to your sweet joints!  What helped: curcumin supplements, poke root oil, epsom salt baths, moderate exercise, anti inflammatory diet, TENS machine, acupuncture, ice packs, heating pad.

Myalgia pain/ muscle soreness/ foot soreness: Yes, I was one of the lucky ones who got that all-over pain they talk about. So brutal. My back was indescribably tight at all times— no amount of massage or acupuncture or rolling around on a tennis ball relieved the pain for any significant amount of time. The pain kept me up at night. And my legs felt like I had just done a 30 mile hike every single day. Some things made pain worse especially when herxing. The Cowden Protocol made the muscle pain so much worse that I eventually had to stop it because standing up became way too painful. Stretching and exercise made me hurt more—especially yoga. What helped: anti-inflammatory diet, curcumin, magnesium, infrared, IVIG, Ozone, ice packs, heating pads.

Muscle twitching: Nothing feels like powerlessness more to me than when my muscles twitch uncontrollably.  I had it all over my body— my face to my toes. It especially sucks on the face—the eyes. I don’t experience this much anymore. I’ve realized that exercise can set it off.  My best solution: Magnesium and/or magnesium with calcium. 

Brain fog: This is a sad one. I found myself constantly word-searching, forgetting names for the first time in my life, and walking around in a complete daze. One day, I couldn’t remember how to write out a check. It’s very painful and felt quite literally like I was losing myself, my ability to think. There was a time in my life that I felt very on-point. The brain fog of Lyme made me feel like I was constantly missing the point, the bullseye, just a little OFF and dreamy and tired. It was deeply depressing. What helped: essential oils especially frankincense, Omega 3 and 6, sleep, forgiving myself and trusting it would get better, rest, moderate exercise, meditation. 

Heart palpitations: I’ve actually had these for a long time. They got worst with Lyme and scared the shit out of me many nights.  What helped: CoQ10, breathing, staying calm.

Breast pain: I was in terrible breast pain every single day for about one year. It hurt to hug, it hurt to lie on my stomach, it all hurt. I’m not sure how this plays into Lyme but for me it came with the illness. Good news: I NEVER experience this one anymore not even much when I’m PMSing. How I fixed it? under wire free bras. That’s it. Or no bras. Let the babies breathe. 

Anxiety/ Depression: Read last weeks post for my in-depth experiecne with Lyme depression. My anxiety was just as bad. I will comment on that in the future. Try meditation, supplements like ashwagandha, acupuncture, massage,  clean eating,  a creative project, gratitude lists, and therapy. If you need extra support from anti-depressants, don’t be ashamed to ask. 

Thyroid/hormone dysfunction: Yep, my hair started thinning—quite a lot. I lost weight. I lost my appetite, my periods got much more painful. I lost temperature control in my body, and my circulation was shit.  It was very scary. I took naturthroid for a while, but I didn’t love it. A friend introduced me to a supplement called Xenostat that helped me a lot! After I started taking it, my hair started growing again.  Also, the progesterone-only “mini pill” or “pop pill” helped my periods and balanced my hormones. 

Dry heaving/ nausea: I have done far too much dry heaving over the last couple of years. I have felt extremely nauseous more times than I can count. Super hot. What helped: homemade ginger tea. Add lemon and cayenne for  an extra healthy kick. Aloe Juice saves the day—drink it 30 minutes before a meal. Also, try waiting 30 minutes before a meal and one hour after a meal before drinking any fluids. That’s a gem.

Other sensations came and went like intense ear pain (I constantly felt like I had a super painful ear infection.), swollen glands, shortness of breath, and numbness and tingling. Other common symptoms that I’ve discovered from talking to people with Lyme are air hunger, night sweats, dizziness, gastrointestinal dysfunction, bladder pain, seizures, fainting, fever, bells palsy,  and headaches—all very common.

Crazy, huh? It’s hard to even remember all of the symptoms because there are so many. But they’re all SO real.  How could one disease present with SO many seemingly unrelated symptoms? I don’t know. I don’t question it. I don’t bother. It’s a waste of my time and my time is needed for healing. I just know that the symptoms are 1.) real 2.) treatable and 3.) reversible.  I urge you to refer to this list any time you feel alone and misunderstood. I urge you to take note of your pain, welcome it, and then get busy focusing on how to care for yourself. We are so powerless over so much of what happens inside of our body. The best way to heal is to take power where you can get it: self-care, treating the symptoms, focusing on the things that bring you joy. focusing on something like taking a photo, taking a bath, or meditating gave me energy and made me feel powerful!

Feel free to comment here to the symptoms you relate to or to add to the list so that someone else can feel heard. Let’s start the solution revolution.

With fun and love,

Jackie

 

 

 

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A Note for my Caretakers

caretakers

Dear Caretakers,

I imagine that this will be the first of many letters and many conversations between us. I’m starting here in a seemingly distant and formal way  because I’m not strong enough for the more intimate teary-eyed conversations right now. I’m also unsure of who needs to read this letter, and I want to give each and every one of you an opportunity to know that you are seen. As I ascend to wellness and the fog is slowly clearing, the vast impact my Lyme disease has had is coming into focus. I look around and I see many faces who have fought with me, and I have no idea what your experience has been, how hard it might have been for various reasons— I never asked. I’ve counted 20 of you who were very close to me over the last three years— 20 of you who I consider to be my main caretakers. 20 of you who were present for much of the suffering, many of the needles, too much of the heartbreak and all of the unthinkable need I was experiencing. But that leaves out maybe 200 people— or more— who donated, prayed, tracked my progress on Facebook, or worried about me. This letter is for all of you, whoever needs it: those of you who fought with me on an almost daily basis on the front lines, those of you who stayed back in the trenches gathering much needed supplies, and  those of you who prayed from your bedroom.  You were not my cheerleaders— you were my ARMY. I write every week about my story—my personal struggle with Lyme disease, stored trauma, and chronic illness. Yes, I often touch on how grateful I feel to have had the most compassionate army of people surrounding me, protecting me from all angles, but it’s come to my attention recently that you have been at war, too. This isn’t just my story—you’ve had your own journey watching someone you love suffer and fight for wellness. And no matter what part you played in this particular journey, your feelings— whether past, present, or future— are valid.

I can empathize—I’ve watched all members of my immediate family,  suffer for most of my life, and I’ve remained unable to do much of anything to help. While I have seen physical illness take hold of people, my family mainly suffers from addiction and mental illness—heartbreaking diseases that impact all surrounding loved ones. Addiction is called a “family disease” for a reason—the powerful current ripples out larger and larger often affecting generations of people whether they’re drinking OR NOT.  People suffering from diseases like these tend to be under the delusion that no one else is affected, that no one else could possibly be in the kind of pain they are in. But I can assure you, there’s PLENTY of suffering to go around. And it’s that type of thinking, that you’re not allowed to have feelings because you couldn’t possibly be suffering more, that prolongs the effects and keeps the current going strong. For a long time, I didn’t let myself really experience the hurt and abandonment I felt because I just assumed that my father suffered more than I did. He talked often and loudly about his own fucked up childhood and made it clear that my own was a cake walk compared to his. I have no idea if that’s true. But I watch people tormented by that voice all of the time—it says, “oh, but my father had it so much worse than me. He was abusive BECAUSE he was abused so I should just be grateful for what I got.” Or, “My mother was the one who suffered in her illness, I can’t possibly make that about me.” It seems like a very compassionate and empathetic voice but really its DNA is that of martyrdom and martyrdom is the tidal wave on the horizon preparing to wipe you out. IF that voice is active around my Lyme disease, if you are one of the 20— or one of the few hundred— and you have suffered through my illness let me just say your pain is valid, your fear is valid and whatever you experienced or begin experiencing is 100 percent valid. I’m not delusional—I’m not saying that Facebook friend #427 is wildly affected by my Lyme disease and needs to seek counseling. I’m just saying that whoever you are and however you’ve been affected—I hope that you have given/ are giving yourself an opportunity to feel it.

I can’t imagine  what it must have been like to be with me every single day through such horror, so many breakdowns, and so much illness. I have no idea what it was like for you to listen to me talk about my own impending death on repeat. Or what it was like for you to watch me go from excited about the full life I had in front of me to bed ridden and in tears every single day. I don’t know how it felt to lose your fun, reliable and available friend. I don’t know what it’s like to care for someone at such a young age, to not know if they’re going to get well and to be terrified to lose them. I don’t know what it was like to stick me with needles while I yelled out in pain, or  what it was like to leave my house when I so obviously didn’t want you to leave. Or how painful it might have been to hear me talk about how suicidal I was or how much I hated myself for being sick or how much I just “couldn’t do another single day in my body.” I imagine that, at moments, I may have felt safer in my own body than you felt watching me—I always held some sense of knowing that I was going to be ok (one day), and you might not have had that. Maybe you were scared to leave me alone, maybe you were scared to hang up the phone with me after I expressed so much pain. Maybe you’re scared that I’m going to abandon our friendship or relationship now that I don’t “need” you anymore. Maybe you’re scared that I’ll forget about you. Maybe this experience kicked up some old experience you’ve had with illness and death in the past or maybe it’s scared you…maybe now you know too much about the in’s and out’s of illness, fucked up doctors and how the medical system doesn’t EXACTLY have our back. And maybe you’re fucking mad at me. I don’t know. I know that I’m incredibly grateful for every single moment that you loaned your hearts to me, and I know that your love has altered me forever.

You people have inspired me every single day to be a better human. You have taught me through your own kind hearts and incredible efforts how to show up for the people I love. I am grateful for each and every thing you did for me. For you who held me day in and day out, always believed in me, and made me feel beautiful when my lips were purple and I was under 100 pounds. You who flew around the world with me to care for me while I got Ozone therapy. You who put me up in Florida and wheeled me around Disneyworld so I could have a day of magic in the midst of shit. You who sent me care packages, called, and texted endlessly. You who made me fundraisers and rubbed my body when it hurt. You who changed me into pajamas, who helped me get up stairs and hills, who brightened up my day with smoothies, food, and laughter. YOU are my fucking heroes.

I sincerely hope that you’ve gathered your own support through whatever journey you’re on—your own army—and that, if you haven’t, you begin to get help now if you need it. This is not just a message about my Lyme disease. It’s also a message to say that no one gets left out of life’s obstacles. Pain is pain—it’s relative and credible no matter what. And while I’m not particularly ready to counsel with you on how the past three years have potentially hurt you, I do want you to know that you are in my thoughts. I hope you know that I think of each of you everyday. That I know I couldn’t have gotten well without your endless support and love. I hope you know that I’m not going anywhere, and that now we get to do all of the fun things we’ve been planning for the last three years. I hope you know that every single hug, every text message, every phone call, and every time you held me while I sobbed, screamed and cried took me one step closer to health. And please know that as I heal, I imagine all of us healing together.

With Fun and Love,

Jackie

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