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.

A lot of people with Lyme disease—especially Australians— go to Bali for this one doctor and this one treatment. Penny was in her forties—she had an incredibly sweet demeanor, long nails, tan skin, a great body, she wore modest shorts, a tank and flip-flops. Her hair sat in an effortless pony tail, her face was untouched by makeup.  I had so many questions, “when, how, what have you tried, what are your symptoms, do you work?” I was constantly comparing myself to others with Lyme, I was on a mission to find out whether or not I was making it up, whether or not it seemed likely that I would recover—or maybe I was on a mission to feel less alone. Most of what she said was all too familiar to me. Her words confirmed that Lyme was real.  She knew how tired I was when I said I was tired; I knew how much she needed to rest even though she didn’t want to. Together, we understood the loneliness. So few actually understand what I felt, what I was going through. It felt like a hit of validation any time someone else talked about the symptoms I had been complaining about: We can’t all be making up the same symptoms. We aren’t in fucking cahoots. But there was one big difference. I was newly sick —just a year and a half in— and she had been sick since she could remember.

I remember Penny sympathetically saying to me, “I think it’s harder for you. Because you know what feeling good feels like. You know? I never really knew that. I don’t really know what it is to do a cart-wheel on the beach without pain. It’s been this way since my early teens. But you know what that feels like. And it got taken away. And, I can’t imagine how hard that must be.”

“………..Really?” I asked, dumbfounded.

“Yes. don’t you think?” she said.

I didn’t. I definitely didn’t think. I thought she was way off.  My god, I was so glad I hadn’t been sick my whole life and, to be fair, I still am glad about that. But now… now I get precisely what she was talking about.

Recently, it torments me—the memories of effortless late nights and early mornings, the fearless dive into sugary desserts, the hikes without pain, the ability to hustle and spend my money on things that weren’t about my health, the ability to push through, the tight body, the very rosy cheeks, the falling asleep without the assistance of melatonin, 5-HTP and sun-theanine, the drinking coffee first thing in the morning instead of celery juice and water and tea, the plan-making, and jam-packed schedule, the giant smile I’d have as I ran uphill, downhill, and through the hills, the dancing, oh the late- night- anytime dance parties, the bountiful, delicious hope that lived inside of me for my bright future, and the innocence—the not knowing the dark underbelly of life.

My positivity reserves are all used up, they are tattered and unrecognizable now.

And here’s the confusing thing: I’m so much better now! Today, I CAN make plans, I can hike, I can be spontaneous again, and I can work again. Most of my days, I feel very alive. But it’s not without work. It takes a very careful house of cards to keep me stable and that takes up a lot of my precious time. Time that I would much prefer not making doctor phone calls, or peeing into a cup or getting blood drawn or screaming while I receive an infusion on my couch. There was a time when feeling like I feel now would actually be the predecessor to getting a cold. A time where I would lay low and wait to get back on my feet. But this is the new “on my feet.” So, when I sit at home writing a post or memorizing lines or sending emails, sometimes I remember when it was all so much different—a different body and a different mind. A mind before illness. A mind free from years of discouragement, rejection, and crazy depression.  A heart free of the trauma that three years of illness comes with. A free and happy and hopeful body—before I knew that my body could abandon me.  I would be lying if I said I didn’t miss it. I would be lying if I said that sometimes I wish this didn’t happen, sometimes I wish nothing changed, sometimes I wish I didn’t need this lesson in order to grow to my fullest potential. But I did.

I’ve posted a lot about my triumphs and how much I’ve grown as a human and about how I wouldn’t have it any other way. Blah blah blah. It’s not untrue. I DO feel that way. And I also feel betrayed and ripped off and really really bummed that the second half of my twenties were spent….suffering. I imagined those years would be full of very sexy successes. But, in so many ways, they are my most fucked.

From what I’ve learned, my current experience is extremely common. Since I’m safe now and not desperately trying to survive, I’m more aware of how difficult it’s been—what a beating I took. I’m less focused on needing to lie down and be spoon-fed so I get some nutrients and more focused on the fact that I used to be able to wake up without joint pain. I see clearly all I’ve lost and I’m not entirely clear on everything I’ve gained. Not yet. I’m trying to welcome my new self to the table and get to know her and respect her. And I also try to use my old memories to my advantage when they come stampeding in. I use them as fuel to keep striving for health, for a pain-free body, as fuel to persevere. It will always be different than it once was because I am different. I am forever altered. For better and  worse. I can find that little seed of hope that’s left over and nourish the fuck out of it—start sewing up the tattered positivity reserves. I can just keep going. If there’s one thing I’m good at it’s keeping on no matter the circumstances.

Just keep swimming.

Fun and love,

Jackie xx

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.

The episode proves nothing. Oh, I’m sorry, it proves one thing: There is a very expensive item at Whole Foods that claims to cure heartburn. But—surprise— it doesn’t. Of course, this does us no good because he never divulges the name of the product. But we all know to be suspicious at Whole Foods, right? RIGHT? Instead of using facts and stats and, well, science, he spends his time mocking a world that he clearly knows nothing about—a world that has many advantageous options, a world that helps people—if not, saves people—from pain, heartbreak and illness. Being biased when it comes to medicine can literally take someone’s life.  So, if you happened to catch Bill Nye shamelessly (and ineffectively if you really paid attention) try to debunk any treatment plan that is not FDA approved or available at the pharmacy then I want to offer a deeper, more comprehensive and truer reality.

To be clear, I’m not interested in any radical opinions about medicine whether they are Western or Eastern.  I think the modalities compliment each other nicely—I have healed using both, and I still use both on a daily basis. Where Eastern falls short, I go Western and vice versa. I strongly believe that people should be well-informed, well-researched and do what works for them— that treatment is individual and personal. I think people should never feel bullied into or out of whatever way they deem best to care for themselves.  The only generalized belief I have about healing from something as destructive, cunning, and chronic as Lyme is that it requires a three-fold approach: spiritual, emotional and physical. All three must be met equally to have full success.  Point being, I am not biased. I am, HOWEVER, a person who got sick with something that is a hell of a lot less straightforward than say, a sinus infection—something that is notoriously well-treated with antibiotics. A serious illness and a lack of funds forced me to open up to a world of possibilities when it came to medicine, and I guarantee you, Bill Nye has had no such experience nor did any of the guests on his show.

Considering the wide array of medicines and treatments that are not recognized as Western medicine, I thought it was quite ambitious to debunk ALL of them in just 30 minutes. Of course, he doesn’t at all do what the title of the episode suggests— instead he focuses on magnetic knee bands, sound therapy, and a mysterious $50.00 potion from Whole Foods. Oh, I’m sorry, he also gives us about one minute on homeopathy. He never touches on acupuncture, herbs, infrared saunas, massage, Reiki, supplements, ozone therapy, vitamin drips, exercise, meditation, or FOOD.

He spends the first many minutes of the episode explaining how medicine becomes medicine: Research. Research includes 2 groups, a group given the new drug and a group given a placebo, the results are looked at and effectiveness is determined. I thought this show wasn’t for children? Nye breaks down this process as simply as possible and then for the rest of the episode forgets to ever mention whether or not the alternative medicines he preys on were tested that way. Of course, most aren’t because they can’t get funding to do research—he says himself that alt medicines aren’t researched so consequentially he has no stats or facts.  Alt treatments aren’t given the same kind of money and don’t have backing from big-pharma.  Not to mention that medicine NEVER starts as medicine. If antibiotics are made from mold and fungi then there was a time when they weren’t considered medicine either, right? They had to undergo the process he describes and weren’t discovered until 1928 and chemo wasn’t used in cancer patients until some years later. Remember just some months ago when weed wasn’t medicine? Cancer patients use it now.

But, to be fair,  there are some things we agree on. He suggests people tune their “quack-o-meter.” I would suggest the same. Except that I know lots of “quacks” that have their MD and are prescribing— oh I don’t know—painkillers, psych drugs and antibiotics by the dangerous handful.

His handy check list to help us tune our quack-o-meter involves things like:

“does it claim to be better because it’s natural” 

Mine involves things like:

“Is the doctor taking your symptoms seriously or are they sending you away with some steroids and no blood work.” 

“are you biased” (ahem ahem)

Like him, I believe in research. People should be protecting themselves and doing research on whatever treatment plan they’re after. I think one of the best places to start is by asking people you respect who have recovered from what you have, what they did to get well. And then following it up with a couple of practitioner opinions and your own detective work in books and on the handy computer. He doesn’t approach research the same way—I guess it wouldn’t be entertaining or laugh out loud enough?

Instead, in an effort to debunk sound therapy, he sent an  “in-the-field researcher” to see a sound therapist in Haight Ashbury San Francisco—a notorious hippie-zone. I’ve got to hand it to them, they found one of the kookiest, craziest kinds of healers out there.  They found a man who claims sound therapy can heal cancer, shrink tumors, and get people off their Parkinsons’ meds.  They got the guy on tape screaming at organs. Yikes. It’s shocking. And horrible and can be dangerous to make such extreme claims—claims like “I can cure cancer, ” OR claims like,  “Bill Nye Saves the World.” Seems like the two of them are cut from the same cloth, doesn’t it?  The unfortunate truth is that I have equally terrifying scenes I can recount that take place in a Neurologist’s office. It was also dangerous, shocking and horrible to find out that my neurologist over-prescribed a medicine that could have killed me and failed to notice for five months. It was also horrible when my first doctor for Lyme kept prescribing me handfuls of antibiotics without ever so much as checking my CBC.  It was also shocking when that male OB GYN looked me in the eyes and told me I had a tiny vagina and a beautiful uterus. OMG.  My experience with sound therapy was much more pleasant than those very Western experiences.

As far as sound therapy, I had great experiences —albeit, I visited two in-demand centers that know precisely what they’re doing with those big Himalayan crystal bowls. And I’m here to tell you, it’s a fucking incredible meditation. Relaxation is a key component to combatting illness. The less stress in the body, the less acidic your body is and the easier it is for your immune system to function and fight disease. Your organs and glands aren’t working extra hard to monitor stress reactions. This is researched and proven. SO, wouldn’t something like deep meditative states encouraged by relaxing environments be useful to sick people? It is also proven that  sound therapy specifically is beneficial for stress-induced illness. Why did Bill fail to mention that? Maybe because he hasn’t had a real run-in with illness? Maybe because he has access to good doctors and vacations to the Caribbean whenever he wants them?

Let’s be clear: Just like there are very bad/ dangerous MD’s out there—quacks, if you will—there are also poorly trained and, yes, dangerous healers out there. I should know, I’ve had good and bad experiences with both sets of people. Again, staying well-informed and being your own advocate is key. It is discreditable to discuss the dangers of sound therapy without also discussing how many people are dying because of over-prescribed painkillers. And there are statistics for that.

Bill Nye brings on one guest who veers to the left in his expert panel. He  had legitimate things to say about crystals, sound therapy and complimentary medicine and he was talked over, and mocked by Bill multiple times. It’s a shame because he had solid arguments and it seemed like Mr. Nye was all too overwhelmed to actually address anything he was saying. The “expert panel” was cut short so that a three minute   “comedic stand-up” act could take the stage. Really? I thought this was about science and medicine? The comic makes fun of Deppak Chopra, white people over-buying Buddhist statues and white people ruining what was Yoga. I don’t disagree— what was an amazing spiritual and physical practice is now a hip trend, a fashion industry.  But there’s a lot of incredible yoga teachers and studios. There’s a lot of people living up to the traditional practice. And, more importantly, it helps sick people. It helps people with pain levels, it helps with lymph drainage, it helps with stress levels, and it helps people who are rehabilitating and building their strength back.

I know people who have healed from various illnesses using solely Western medicine or solely Eastern medicine or a combo of the two. And I know people who have died. It can’t all be summed up with science OR the law of attraction.If 34 billion dollars a year are spent on supplements and vitamins and alt medicine then why in the fuck aren’t we looking at what lies beyond that number: people aren’t feeling well and doctors aren’t always helping. Bill tells us to save our money, but we are simply trying to save our lives. I think the much bigger question here, a question that deserves attention and research is:  Why are people feeling so bad and why isn’t the medical industry fixing it?

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. 

Ian took off of work and came with me to the appointment. He was  immediately kicked out of the consultation room due to HIPAA laws. It was all a new experience. No one has ever been kicked out of a consultation with me before, and I have had many friends come to appointments with me. Ian was sent away because he is not my “husband.” Of course, I immediately perked up, wondering, “Hmmm will this make him propose?” I can’t help it. But the doctor pulled me out of that fantasy with all of the scary annoying information that I’m constantly being dealt.

ME: “Can we wait for Ian so that he can absorb all of this information you’re giving me? That’s why he’s with me.”

Doctor: “How much schooling do you have? Are you educated?”

Me: “excuse me?”

Doctor: “Did you go to school? Can you absorb information?”

Me: “I went to school. Some college. And longer training in my field.”

Doctor: “Ok so you don’t need Ian to absorb this information. You’re smart enough.”

What a dick.

He had on one of the most blatant toupees I’ve ever seen. I wanted to rip it off his head and do mean things with it.  Him and his stupid toupee.

Oh, Medi-cal.

Ian signed some paperwork and made it back in time just to hear one last thing. The old toupee’d doctor shook Ian’s hand and said, “Just make sure she doesn’t get sick. Because if she gets sick, what we are worried about is that her immune system can’t fight infection so she could get pneumonia and die. You two have a good day.

You’d think that they would have rushed to get my IVIG figured out considering the threat of death they kicked us out the door with but no: They still haven’t even submitted my file to the infusion company. COOL.

So, while I’m slightly rejoicing over the magical feeling of ‘normal’ illness, I have a little voice—no a giant voice—shouting “don’t get sick. Too late. DEATH awaits.”

Also on a much less dark/devastating note, I am bored as fuck. I am bored, slightly depressed, and lonely and wondering how in the ever-loving fuck I did this for two years!? I stayed in bed, at home, walking from the kitchen to bed to the bathroom for two years. It’s been 24 hours and I feel like a lunatic.

I’m amazed by what we can tolerate as humans when we have no other choice.

Urine:

February 13th was my first day off in a while. It wasn’t even a day off. It was just the morning and afternoon that I had off. Another miracle! I used to have everyday at home and now it’s so sparse that I sometimes crave days to stay at home. In fact, the truth is that on February 13th, I had to cancel plans to stay home so I could pee into a bottle for six hours in “Peece.”

Let me explain: I have this new amazing doctor in New York (that my mother generously paid for) and he suggested/ordered a heavy metal pee test. That’s not what he called it. He used more pro lingo like “urine sample.” I was grateful for the test. It’s the first time in my illness that I feel ready to deal with whether or not I have heavy metal toxicity. Yes, I got my amalgams removed, and took ALA, and ate lots of cilantro, and took loads of charcoal and detoxed like a mofo so it’s not like I wasn’t already taking some actions, but, all of this time, I didn’t have the emotional or physical capacity to find out IF I was actually toxic—I was in NO position to chelate so it didn’t seem constructive to find out IF I was toxic. But now I’m ready.

I received the kit. It was  a cardboard box equipped with a giant plastic bottle, a plastic cup for you to pee in and then transfer to the bottle, and then a small test-tube  vial to eventually send off. You also have to keep your cherished pee in the fridge all day as you add more and more. YUM. I have a slight— or maybe major— obsession with my pee. It’s like a competition I have with myself everyday: How clear can I urinate today? How hydrated am I? Am I acidic or alkaline? It may seem ridiculous but these are the things that get me through. I was uncannily excited about seeing what a giant jug of a day’s pee would look like,  and, I’m here to tell you, it looked FAB. A slight yellow tint but otherwise just hydrated perfection.

I NEEDED to show Ian and my roommate. I needed to brag about my ph levels and my pretty piss. Ian got grossed out and I got mad at him. We often fight about things like this. I think it’s OK to pee in the shower; he thinks it’s disgusting. I think it would be fun to cross streams in the shower; he thinks it’s disgusting. I think it’s hilarious to pee on or near each other when we’re in the ocean; he, again, thinks it’s disgusting. OK, fine. We agree to disagree.

But it only seemed fitting that for Valentine’s day, I would need his help dealing with my urine specimen. I wasn’t going to be home to hand over my specimen to the FedEx guy so he needed to do it. What a man: he rushed home from work and the handoff was successful. That was, for sure, the sweetest thing he did for me on Valentine’s day: passed my beautiful urine to a total stranger.

Happiness

On the topic of romance, last week Ian and I had a terrifyingly vulnerable “chat”—maybe it’s classified as a fight?  But we don’t really fight. He talks, I talk, I cry, we hug, we have sex. We weren’t exactly disagreeing or raising voices—is that what classifies a fight? I don’t know. I grew up with very real fighting so maybe I’m nt the best to ask.

Regardless, near the end of this “talk,” I was scrunched up, sweating, and nauseous and he was standing against a door frame. He said, “I guess all I really want is for you to be happy. I just want you to be happy. Sick or not.”

QUIET. TEARS. SWEAT.

He thinks I’m unhappy? Am I unhappy? After we made up and moved on, I had to do some investigating. No one has ever looked through me like that and accused me of being an “unhappy” person. I’m smiley, and sparkly, and joyful and also…moody. That night, I thought (and haven’t stopped thinking), what is happiness? Happiness is short- term. It’s a state of mind that comes and goes. I don’t even want to walk around happy all of the time: How boring, how false, how inauthentic. Still, it was painful to finally admit to myself: I am not happy; I am hopeful. The last three years of illness have taken a toll on me. I have, truth be told, been more sad than happy. But I certainly don’t need to berate myself for this—I have compassion for myself, AND I’m ready to outgrow some of what has held me down. But still, the more I thought about it, happiness is not the end goal. Too much pressure. I know enough now to know that I have no idea what life has in store for me—there will be joyous times and shit times.  I think being “happy” is a bullshit blanket statement. I almost wanted to take that word right out of my vocabulary. I was so mad at it. I wonder how many people feel pressured to be happy? It’s not what I want.

I want PEACE. I want an inner peace so sturdy that it can hold the joy and the sadness—the ups and downs. What a freedom to not be striving for happiness. It lands me right in the present moment. Peace. When do I feel most peaceful? When I am most connected to something bigger than me. When I am helping others. When I am present. HERE, doing the next right thing. Whether that’s peeing in a bottle, drinking lemon cayenne water to bust my mucous, watching Schitt’s Creek,  getting on the stage to perform, writing, having sex, talking to friends, and the list goes on. Peace is possible. I’m excited to have something new to strive for everyday. I feel free.

Other things I wrote/ am offering this week:

On patience

On romance

with fun and love and peece,

Jackie

 

 

 

 

 

 

 

While we’re on the Topic of Women: What’s up with our Immune Systems?

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His teeth moved in his mouth like they weren’t cemented in place—were they dentures or just loose? Was it a twitch he had in his jaw that made his upper teeth push against his lower teeth rocking them forward like that? Was it just his age—will my teeth soften too one day? Jack was in his nineties, after all. That’s why I liked him so much—he had almost a century of life in him, nine decades of sorting through the garbage life can sometimes hand you—learning about humanity, empathy, and compassion.  His eyes had seen so much and his heart had held agony and released it more times than I could even imagine. I sat at a diner with him on Maui—the island I dubiously called home and the island he inhabited only in the winter, escaping Canada’s cold. Living there, I sometimes felt like I was either waiting for him to come or missing his presence—he was always on my mind. I met him a couple of years earlier when I was vacationing on Maui. I overheard him in a conversation talking calmly and precisely about the effects of growing up with alcoholism in the home. He didn’t grow up that way. It was not his path, but he seemed to understand what it was like and have a compassion that I had yet to meet. I stuck to him, maybe he became one of my collectible father figurines. I don’t really know. I only know that I wanted to learn from a man with a heart like his.  So I jumped on the opportunity to spend as much time with him as possible over those few winter months of 2011 in an effort to learn faster— I was dying to get ahead of myself, get ahead of my youthful age of 24, desperate to outsmart my humanity and escape the traps that maybe he fell into. Why, oh why, wasn’t I already at that plateau—that juicy plateau of nothingness and comfort. I was tired of navigating—no more obstacles, please.  I sat with my head resting on the top of the booth and said, “do you think I’ll be successful in life?”  Jack said, “I see you. I see how hard you’re trying. You have to be careful. You’re going to exhaust yourself. Women have a tendency to overdo it. I’ve seen it all of my life. Some women suffer in an effort to over achieve. If you’re not careful, you’re going to burn out way too early in life. I see it in you.” I knew he was right in that moment. I mean, we were just trying to have a cheeseburger on a Saturday night, but my head was diving into the future, diving into all the things I needed to accomplish between that night and the age of 34: I’ve gotta get home and do the dishes, dust the floor, have sex with my boyfriend, do we have enough sex, do I please him, do I want to live here, what am I going to do for a career if I’m not acting, when am I going to write my book and pick up my camera, and I haven’t read the news all week, and this all has to be done in the next 10 years so that I can have a child, and my god, I don’t think I want to do that on Maui so I should probably start preparing for my move to…somewhere..Colorado, Los Angeles, New York, Oahu. But I also  knew his caution wouldn’t work, I would have to experience the burn out myself before I was willing to change. I got sick with Lyme disease two years later: The ultimate burn-out. And from the moment I was diagnosed,  I couldn’t help but hear his sentiment on repeat in my brain. I was only 26 and ready to tap out. And when I started to meet woman after woman after woman who were all also sick with Lyme or autoimmune challenges, I started seriously pondering the source of our “sickliness.”

I know roughly 80 women (mostly under the age of 40) that are sick with Lyme, autoimmune disease, cancer, or mysterious and rare illnesses yet to be diagnosed or completely misunderstood. I know about ten men with similar struggles. These are all people I have directly spoken to—or befriended— over the last three years. 75% of those affected by autoimmune disease are women with thyroid diseases and lupus holding a 10:1 ratio. Autoimmune related illness is one of the top ten causes of death among females under the age of 64. People are dying—mostly women. It is estimated that 50 million Americans are suffering from autoimmune disease while around 13 million are suffering from cancer worldwide (just to give an idea of the magnitude).  The funding for cancer research is much higher than the funding for autoimmune diseases—never fucking mind Lyme funding or research.  As far as Lyme disease, there is no clear indicator if it affects women more than men. There hasn’t been enough research done because it is not recognized as a chronic or life-threatening condition. (It is. It is both of those things.) It seems to present differently —drastically so—between the sexes (perhaps due to hormones, our immune system response, and the fact that doctor’s don’t always hear us), but with Lyme I only have my personal experience: Everyone I have met with chronic, debilitating Lyme disease—upwards of 50 people— has been a woman with the exception of four men. FOUR. So WHY are women experiencing exaggerated illness specifically in our “child-bearing” years? Is it like my friend Jack said—because we are trying to be and do it all in the 21st century? Or is it because our immune systems are… whacky (I’m no doctor), or is it because we are being ignored by the medical community?

In too many instances, we aren’t taken seriously from the exam table. Doctor’s are quick to diagnose women as “hysterical.” Oh, I’m sorry, they don’t use that term today—because it’s not the 1600’s— the term “hysterical” has been changed to a more palatable yet still completely insulting “depressed” or “conversion disorder.” Jennifer Brea speaks eloquently and vulnerably on this topic and how it has affected her life on her most recent ted talk. Please watch it. On women, Brea says with grace: “Our immune systems are just as much a battleground for equality as the rest of our bodies.” I am lucky that I haven’t had to deal with the life-threatening consequences of this particular brand of dismissal. Sure, many doctor’s I’ve seen have denied Lyme disease’s existence and many have questioned if I was just really depressed and needed to get more exercise, but because I was lucky enough to have a physical manifestation on my body that produced the diagnosis of Lyme disease almost immediately, I could shrug the uninformed doctor’s off more quickly. Having a confirmed diagnosis from almost the start worked deeply in my favor. However, in order to get well, I had to become my own doctor because I couldn’t find a single MD who was willing to listen to me and truly care for me for a manageable price. I used doctors as extensions of my care, as my associates but I was the boss—again, as a woman, I had to take on more work and more stress to get the job done. I watch my boyfriend do little to no research on his physical issues. The doctor simply takes care of him—sure it’s not as complex as Lyme (that’s debatable), but not a single doctor has ever suggested that his pain was due to being under-exercised or over-sensitive. He talked; they listened. I have talked;  they have laughed.

But that can’t be the only reason we are getting hit harder. Is it because of our hormones? Is it because of the battleground we are biologically built with in order to reproduce? Hormones are complicated as fuck (again, I’m no doctor). High estrogen/ low estrogen and high progesterone/low progesterone can have disastrous effects on the system. Well what the fuck? How are we supposed to stay in balance at all times. Many of us take extra amounts of estrogen or progesterone (putting our bodies through the wringer so that we don’t get pregnant) in our birth control. It has been noted that excessive amounts of estrogen end up suppressing the thyroid and activity of NK cells (natural killer cells).It has been studied and it is hypothesized that the reason women get hit harder with autoimmune disease is due to the relationship between estrogen and the immune system.  We  KNOW that hormones play a role because it’s been researched that our illnesses are directly affected by our cycles: ovulation, menstruation, and menopause. We tend to experience a serious symptom upgrade during any of these cycles. Speaking for myself, it’s fucking brutal. But then there’s pregnancy. Pregnancy. The whole creating life thing we do.  Dr. Steven Gundry, an expert on autoimmune issues, says in response to why women are more affected than men:  “A woman’s immune system must be able to do two things that are diametrically opposed; always be on the lookout for pathogens like bacteria and virus and parasites, but simultaneously switch to totally ignoring the largest parasite ever when you become pregnant. I believe, along with many others, that this dual role contributes to confusion for the immune system.” And, on top of that, some say that some fetal cells get leftover in our bodies after birth waging war confusing the shit out of our immune system. WHAT? OK so our bodies are much more complex than our male couterpart. Does that explain it? It hasn’t been proven.

Autoimmune disease and Lyme disease and their acute effects on women are being examined and heard, but then what about all of the other women I know that are suffering in similar fashions without a diagnosis. Or with a different diagnosis. I just keep coming back to my old friend Jack. Are we way too hard on ourselves? Are we burning out trying to climb to the top of our career, have children, be a homemaker, and a good friend  and do it all within our chilbearing years? It’s a lot to ask for, isn’t it? It’s stressful—are our minds constantly busy and stressed trying to be everything to everyone? Is it our reaction to stress? Is it the pressure of our biological instict to  be a shoulder to cry on while men find a way to quite literally “turn it off” and compartmentalize pain?  None of this is to negate the stress that men experience. I wouldn’t trade places with them—I really wouldn’t. I just want to offer an honest look at our complex bodies and minds and in the hopes that we ease up on ourselves—maybe even expect less of ourselves (EEEK). That we slow down. That we rest more. That we keep speaking up for ourselves and being heard.  That we come together and love one another. That we take just some of the pressure off in an effort to live presently and more fully.

Fun and love,

Jackie

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Clean Eating: My “Controversial” Diet

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I gave up booze and drugs at the startling age of 17—the age many (or most?) people are just getting started. Jaws still drop when I mention in passing that I, in fact, do not drink and haven’t in over a decade, but the news doesn’t land with the same deafening impact it did in my early twenties when my peers found such a choice to be blasphemous. I am no stranger to the often judgmental— but sometimes inquisitive— reaction I get from strangers or new friends (or even “friends”) about my lifestyle choices. Choice. If you want to call it that. But I quit drinking because it was destroying me and I really want to live…fully and vibrantly. And in order to LIVE fully, vibrantly, and, ironically, limitlessly—I now follow an extremely strict diet as well, a diet that generates the same jaw-dropping, mind-boggling reaction— “Why do you do that to yourself?  What DO you eat? Do you have any fun, ever? How do you do it?” I’d like to address these questions I am faced with almost daily.

I do this FOR myself  because it is one of the things that saved my life. I do it because I prefer to be in a pain-free body. I do it because I like to have energy and sleep well and because I really really like that I have essentially starved Lyme disease out of my body. I do it because I  love to be alive and I love to feel alive. I do it because I was very sick and willing to do whatever I needed to get better and, as it turned out, I like this way of life a whole lot better. I do not feel deprived—I feel rich and fulfilled.

What do I eat?  I eat fruits,vegetables, all meat (with the exception of pork), rice, legumes, nuts, seeds, and dark chocolate. That means I am free of alcohol, coffee, gluten, dairy (with the exception of goat dairy and ghee), refined sugar, soy, pork, eggs, corn, MSG, canola oil,  and any weird preservatives like citric acid.  And, yes, I have fun. I actually have much more fun because I’m healthy, which affords me the opportunity to actually go outside, exercise, socialize, work, and play. I have a big full life AND I have a big full menu of delicious foods to choose from. And for the people who earnestly ask me how to do it, for those of you who are also sick and looking to jumpstart your immune system or relieve a little pain or just clean up your act in hopes of a brighter future, below is a practical look at how I do it. But, first, a quick disclaimer: This is the diet that works for me. I deeply believe that we each have an ideal diet—I cannot say what’s best for you, listen to your body.

On an empty stomach every morning, I drink 16 oz of celery juice followed by filtered water and probiotics. Following that, I make a strong green tea blended with coconut oil and cacao powder.

Breakfast: A smoothie of 2 bananas, a cup of wild blueberries and pure hemp protein

Mid morning snack: Apples with almond butter or just apples OR Food for Life exotic black rice bread with sliced tomatos, avocado, and olive oil

Lunch: A big salad with kale, spinach, or arugula base and toppers of radishes, cucumbers, tomatoes, hemp seeds, avocado mash, and a Sunshine, Engine 2, or Hillary’s veggie patty on top. Dressing is lemon, olive oil and salt.

Snacks: Carrot sticks, gluten free crackers, nuts, dark chocolate, Lara bars,

Dinner: Brown rice, steamed or sauteed veggies, black beans OR a turkey or beef patty OR a homemade soup and black rice bread OR brown rice pasta with pesto and some raw veggies.

Delicious and mostly clean comfort food: Coconut oil purple heirloom potato chips by Jackson’s Honest, Amy’s gluten free and dairy free mac and cheese, gluten free and vegan desserts (there are so many, be careful with this one—they’re still often full of sugar. Read ingredient labels), goat cheese and Jilz gluten free crackers. If you live in a big city then you would be surprised just how many options are out there of delicious tasting and clean foods. I have eaten many gluten free, dairy free pizzas in Los Angeles and I have MADE the creamist mashed potatoes using only cashews to make them creamy. It IS possible to enjoy this diet.

Favorite resources for cooking this way: Kriscarr.com, Anthony William medicalmedium.com, Soupelina (get the cookbook on amazon!) and my friends that have passed down incredible recipes and gems for superfoods to me.

Also: I cheat! I mean, I really cheat! Every once in awhile, I have the cake or the bread or the—I don’t know—ENTIRE brick of cheese. I love french fries and I love them with mayo and I try my damnest to balance out the fries with leafy greens, but I’m sure I’ve failed. Now, I usually retreat from these choices quickly since they don’t taste as good as they once did AND they don’t make me feel good but I’m telling you that “cheating” IS  a part of clean eating…for me, anyway.

Get your nutrients, enjoy your food, live your best life,  do not beat yourself up, and use this as a resource if you ever need it.

Fun and love,

Jackie

 

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.

A couple of days after my 26th birthday, a mysterious rash began to take up space on my skin. MY skin. Why am I powerless over what happens to my very own protective shell? Why is it my shell, if it’s so vulnerable?  One itchy bump on my thigh, one itchy bump on my elbow, and one itchy bump on my butt later, I realized I might have a little problem. The anxiety set in. I was overly attentive, looking at the newly forming rashes every few minutes, “did it go down, did it go up?” Days passed and the rashes were only expanding. I had one on my calf growing more irritated by the minute and wider by the minute. Like it was alive. I lied  in bed one night on the phone with a free-spirited young man I was loosely dating. I was scantily clad in cotton underwear and a tee- shirt. I was examining the rashes, half invested in our conversation, half obsessed and anxious about my mystery ailment. Slowly, like a hippo’s eyes surfacing on a placid river, a red bump formed on my upper thigh. I watched it come, and I watched it grow. Three more bumps then streaks overtaking the upper part of my thigh—a part of my thigh that was meant to be sexy and welcoming.  And a weighted anxiety began to torture me. “I’ve gotta go,” I quickly hung up the phone, and the googling began.

What in the ever- loving- fuck was happening to my own body? I researched psoriasis, bed bugs, impetigo, poison oak, poison ivy, and spider bites. I was impatient— I tormented myself with questions that I wouldn’t be able to answer unless I was a doctor.  I quit drinking coffee in an effort to magically cure myself. I tried every type of cream and anti-allergy pill. I did everything a young waitress with no insurance could do and nothing worked. I kept naively thinking, “once I work this rash situation out then life can just go back to normal.” I had lived my life that way and with that false idea: get over this obstacle and then I’ll coast. But, in that state,  I was constantly seeking the coast and anxious to get the hurdle over with. When so much of life is an obstacle, well then you’re really just asking to miss a lot of life, right? Part of the reason I HAD such bad anxiety was because I could not tolerate the messiness, the discomfort, of LIFE. Life is messy, hard, and full of detours and if I couldn’t tolerate that… well then life would be …intolerable.

I was desperate to FIGURE IT OUT so after two weeks of no answers,  I took myself to urgent care and was promptly told that I likely had Lyme disease. I was relieved, “cool, I’ll take some antibiotics and then go back to my normal life.” My anxiety dissipated. I was a survivor; I knew how to get my needs met and I knew how to show up for the tough times… Or so I thought.

I was immediately met with a resistance I had never known before. Part of the world seemed to be collectively AGAINST me healing. I felt like I was at war.

I instantly tried to find a doctor. No one would see me on short notice; no one would see me for a manageable price—the beginnings of anxiety, abandonment, and frustration in dealing with the medical community.

I finally saw a doctor, and the cost went directly on an already debited credit card—the beginnings of financial anxiety.

The antibiotics didn’t work—the beginnings of a deep fear that I wouldn’t get well.

My family didn’t show up for me—the beginnings of a loneliness, abandonment and anxiety full of depth. I constantly wondered if I would be cared for.

Lyme disease began affecting me neurologically— Lyme anxiety, a different beast altogether.

Insomnia kicked in and I stopped sleeping for nights on end—My anxiety took me over and I started saying, “it feels like satan is trapped inside of my body.”

I got so sick that working suffered, I had to back out of creative projects, I could barely waitress, and my debt expanded—rational financial panic, rational panic about the potential my future held.

I lost weight, I lost hair, I lost color in my skin—Anxiety about losing my looks, my most used coping mechanism in this life. Also, the “I might actually die” anxiety.

I traveled around the world seeking treatments—I was afraid of needles, afraid the treatments wouldn’t work, afraid I’d disappoint people, never work again, and the list goes on.

I cried all of the time—Anxiety that I would lose my boyfriend to this disease, anxiety that I would end up in the psych ward, that I was actually losing my mind.

I wasn’t sure I’d survive OR, God forbid, what if  I would have to LIVE WITH Lyme disease.

 I would have rather died. In fact, I wanted to die. 

I’m glad I didn’t.

I’m glad that I kept calling the doctors even when they disappointed me.

I’m glad that I put the treatments on a credit card; I’m glad I faced the fear of doing a fundraiser and let my friends and family support alternative treatments.

I’m glad I tried the antibiotics, and I’m glad I was willing to do alternative treatments. I’m glad I faced fears of each new treatments and jumped in with a zest and a need for life.

I’m glad I felt the rage and the heart-break caused by my family’s initial absence, I’m glad I talked about it, I’m glad I took my mother to therapy, and I’m glad I have the option to forgive.

I’m glad I never stopped seeking new solutions to my sleep issues, and I’m glad I found one.

I’m glad I kept my creativity alive by allowing myself to be imperfect. I’m glad I faced the fear of backing out of projects, putting work on hold and resting for a while.

I’m glad I quit waitressing and trusted the universe. The universe provided.

I’m fucking glad that I showed up no matter how I looked or felt. I looked you in the eye when i was pale in the face and 97 lbs and needed a wheelchair, I looked you in the eye and said, “I’m so fucking afraid, but let’s keep going if you don’t mind pushing.”

I’m glad that I stayed in bed when I was afraid I’d miss out on something cool; I’m glad I got out of bed when I was afraid for you to see my face; I’m glad I said “yes” as often as I could and “no” when I knew it would disappoint you.

I’m glad I yelled at doctors and asked for help and risked losing everything— including my own life— in an effort to get well and thrive.

Because now I’m out on the other side and it has all been worth it. And I’m not just saying that because it’s kind of a radical thing to say—I mean it.

Sometimes I think about anxiety: the pumping heart, tingly body, erratic thoughts, paranoid eyes, and I think, “that’s a body that really really wants to live.”

Maybe my anxiety is my desire to live run amuck. Maybe it’s my anxiety that I have to thank for pushing me to fight for life.

I love being alive, I desperately want to live.

Lyme disease, in many ways, birthed my greatest fears into reality. And I faced them head on, sometimes with an army of people behind me and sometimes alone. But I made sure to face each and every one. And I feel like I have a brand new life. I do not have some identity I’ve wrapped myself in, some identity I’m trying to prove. Today, I live more free than I was in the first place: I am deeply in touch with the softness, the fragility and truth, of my humanity (and yours), but also now I  really  know what the fuck I am capable of.

Go show ’em what you’re made of. It’s worth it.

fun and love,

Jackie

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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