My Top 10 Simple and Affordable Wellness Suggestions

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This week, I’m in my second of twelve IVIG treatments. Five days in a row, six hours a day, I’m receiving IV Immunoglobulin therapy. It’s really hard on my body. I’m writing to you with an IV in my right hand (I was too out of it to take the practical idiocy of this into account- I’m a “righty” and I can’t get my hand wet.So I’m filthy)   an IV in my left arm, and some kind of head, neck, and back pain that has kept me up too many hours of the nights/ early mornings. I am mostly miserable. Considering the circumstances, for this weeks post, I’m going to take my business partner, Eva Fischer’s advice: “It’s OK to Can’t” and keep it simple.

Here is my tailor-made list of simple and affordable healing “musts.” Just to be clear: this is MY list- formed from 2 1/2 years of experience and many wise suggestions from fellow “spoonies” and some doctors. I’m simply sharing my experience. I’m not suggesting it’s the only way…I’m suggesting you create your own list.
But I’m definitely right on all accounts. 🙂

10. Sunshine: Vitamin D is an essential aspect of healing, and, it’s way more powerful to get it from the sun than to take it in supplement form. Fortunately, for those of us located in sunny parts of the world, it’s easy to step into a pool of sunshine and stay there for fifteen-thirty minutes. I understand it’s not that convenient for everyone. Regardless, I urge you to set aside time to let some of your skin touch the sun. It will lift your spirits and enhance your health. It’s important not to wear sunscreen. Sunscreen blocks vitamin D production. You can produce up to 25,000 IU of vitamin D between 15- 30 minutes of sunshine depending on other factors (skin tone, time of day, etc… ). Another quick FYI: glass blocks all UVB so, although it might boost your mood which is great, you will not get vitamin D if you are behind glass (glass= window).

9.Lymphatic Drainage: AKA: Exercise. I don’t use the word “exercise” because, if you’re like me, that word suggests something way more aggressive than what you might be capable of. Whatever it is you’re healing from will likely determine how much and what kind of movement you can do. It’s an individual quest to find the exercise that’s right for you. Regardless, I try to strategically move at some point in the day to assist in draining my lymph system. Light walks are a good call- you can even double fist it and get your sun time this way! Riding a bike (stationary or not) is amazing for draining, and usually really nice for my body. I often lay on my back with my legs up and pedal in the air. That is an effective and gentle way to move without causing too much strain on my body. It also ends up being a core work out which always makes me feel stronger and happier. If you have a trampoline,  use it! JUST MOVE A LITTLE.

8.Probiotics and stuff: Find your necessary supplements. I think it’s safe to say that probiotics are good for everyone. Your immune system starts in your gut and probiotics keep your gut healthy- it’s really simple. Take them in the morning on an empty stomach and at least 30-50 billion flora a day. If you’re on antibiotics wait AT LEAST two hours between abx and probiotics as abx just kill the good flora you’re taking. I also take magnesium, coQ10, Curcumin, esterC, L-lysine, and B complex daily among others. If you do some research you can find out what the best supplements are for you. God knows, I have tried them all , but it gets expensive and, so, I’ve found my most helpful ones and stick to them. It’s also important to give your cells a break as they get over saturated. Sometimes, I just take a day or two completely off.

7.Breathe: That’s right! This annoying word. This can come in the form of meditation, reading, watching TV, doing EMDR (I highly suggest the incredible EMDR anxiety release app- $5.00) or just sitting still and breathing. It’s so important to take deep breaths and avoid stress getting caught in my body. I’m no breathing expert. I forget to breathe  A LOT. I take my own suggestion to breathe usually around 3 or 5 am when I wake up in pain and with overwhelming thoughts about the future. I put a hand on my belly and just keep breathing into it- I keep returning my attention to whether or not I’m breathing until I fall back asleep. Take time, as often as possible, to take deep breaths and move your anxiety through instead of letting it get stuck. Stay present, do one thing at a time, and keep it simple. Stress IS never helpful or worthwhile. Sometimes, the greatest action I can take for my well-being is to breathe. Hint: Kundalini Yoga will keep you breathing 😉

6. Rest- STUPID REST. I have a negative physical reaction to that irritating word. But, alas, it has been made royalty in the well-being courts, and I bow down to it. I avoided rest for far too long, and I blame my restlessness for keeping me sick sometimes- so now, I try to take it very seriously. I turn off for the night, and make sure I have a full 8 hours of being in bed even if I’m not sleeping that whole time. I’ve found, I also need to take time midday. My personal goal is to take an hour every afternoon/ evening where I turn my phone off and do nothing but read, watch tv or lay still and breathe. On top of that, I need one FULL DAY OFF per week. That means, I have one day where I do not put any pressure on myself to accomplish ANYTHING. I understand that not everyone is lucky enough to be in this position (those of you with children). For those who can, I suggest a full day of expecting nothing of yourself but to eat, hydrate, take your supplements, and enjoy a day of rest! I’ve come to LOVE these days. From the girl who had a panic attack every time she was forced to sit still, that’s pretty incredible.

5. Gratitude lists-  I don’t want to speak for everyone, but I can always find PLENTY to be grateful for. That doesn’t mean we’re not all allowed some moments of sadness, anger, and even self-pity. SURE! Go for it! It’s all just practice. I’ve been practicing writing gratitude lists for almost a decade and the result has been profound. I was once such a complainer, and I rarely complain these days without a whole list of positives birthed from the very same place the complaints come from. Being sick can get really dark for me, and I’d say gratitude lists are the flashing lights that keep me moving through the tunnel. Get it? The light is not at the end of the tunnel- it’s here and now…when I’m grateful.

4.Joy- Find SOMETHING that lifts your spirits and do it!  Like gratitude, I can often, if not always, find some moments of joy in my day. Prior to writing this blog (which has been my recent source of joy), I picked up my camera and took a photo a day for 365 days.I can’t tell you how many times the simple act of taking some photos changed the whole of my experience for that day. Now, during the hardest time of my life, I have these photos to look at…something fun and positive came out of that shitty year. Whether it’s watching cartoons, listening to good music, dancing,  singing in the shower, or working on something I believe in, my cells crave joy, and I feel healthier and lighter when I give it to them.

3. Toxic free- I Removed as many toxins as possible. I replace any harsh toxic cleaners (bleach. yuck) with more natural cleaners (better yet just use baking soda and vinegar). I use aluminum free deodorant (try thai crystal- it does work!) I use a natural toothpaste, natural hand wash, dish cleaner, body soap, laundry detergent, and removed all forms of mercury from my life (fish, fish oil supplements, amalgam fillings). There are so many pollutants and harsh chemicals around us (and in our food) so I do my best to control what I can. I never, ever saw myself going this route, I was a bleach using, aluminum using, don’t give a fuck human. But, I’m on that mission for total wellness now 🙂

2.Eat- Unless I’m doing a cleanse of some sort that is good for me, I don’t stop eating nutritious food! Sometimes, our appetites suffer as a result of being sick, and I’ve certainly been there. When I cut all of the crap out of my diet and I was so sick, I had a really hard time staying on top of eating. I suddenly dropped 10 pounds which is a lot on my small frame. I started just force feeding myself three nutritious meals a day. Now I happily consume food. I seem to be hungry all of the time which is great news! My daily menu generally consists of this: Celery juice on an empty stomach, followed by a glass of water with my supplements, followed by coffee,then a smoothies of 2 bananas, 2 dates, a cup of wild blueberries and some sort of protein that I can take my xenostat with. Lunch is a giant (mostly raw) salad: I use two different kinds of greens, cucumber, celery, radish, hemp seeds, a full avocado smashed with raw garlic and lemon, an engine 2 black bean burger and Bragg’s organic olive oil. Dinner is usually a toss-up, but I tend to go for something like rice, beans, sweet potato mash or cauliflower mash with sautéed snap peas and a turkey patty. Obviously, I’m on an extremely strict diet. For snacks, I eat nuts, seeds, fruit, veggies, lara bars, go raw Spirulina crackers, and gluten-free toast with coconut oil. I urge you to find the foods that are most important to your well-being and eat them everyday.

1. Stay Hydrated- OH! My favorite. My mother calls me the “hydration bully” for a reason. I average 2.5 liters of rehydrating fluids a day. It’s much harder for infection to live in an alkaline body, and one of the best ways to alkaline is by drinking water with citrus- for me, usually lemon or lime. It’s also super important to have a good filtering system!  Green juices are also hydrating especially straight cucumber juice or celery juice, and then, there’s the beloved coconut water! I make sure to buy organic coconut water with NOTHING ELSE in it and I usually squeeze some lime into it. Then there’s herbal teas, and making your own ginger tea which usually makes me feel really good. I just heat up some filtered water with sliced ginger in it and let it steep. I add lemon or cayenne if I’m feeling extra spicy. It’s SO important, especially if you’re participating in ANY detox methods to drink loads of water.
Speaking of hydration, I’m currently drinking coffee. I’ll be on my couch watching “A Big Fat Greek Wedding” until treatment is over.  We’re all just doing our best.

With Fun and Love,

Jackie

In Loving Memory

 

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My father is not dead- not by medical standards. Not yet. Tick tock- I’ve been waiting for him to die, watching, angrily, as the more innocent go in his place. He’s more..missing with an expectation of no return- I expect he’ll die, lonely, on his lifelong search for the unattainable. I tried. I tried to show him that maybe I could BE all he was searching for, but there’s no competing with the ever- sparkly temptress crack cocaine. She comes with immortal magic AND hookers. At some point, it’s just demoralizing to compete with that world ESPECIALLY when it’s for the attention of an abusive lunatic- the whores can have him. I let him go. He’s now an unrecognizable imposter still called my dad. He’s the walking dead. This kind of grief is very complicated- losing someone completely before they’ve actually departed. I tried to avoid the feelings for a decade, covering my heartbreak up with “forgiveness,” “acceptance,” and “apathy.” When I got sick and was stripped of all of my defenses, maintaining any sort of relationship with my father felt like voluntarily signing up for a causeless war that puts me in the front line alone with no protection or weapons. Being on a mission for total wellness, that would be insane of me. Instead, I faced my past- my devastating heartbreak, and, very recently, uncovered the love I had forgotten all about.

It’s SO easy to vilify my father: he’s an abusive crack addict/ alcoholic, narcissist with sociopathic tendencies, cheater, liar, and he left my family in shambles. I spent most of my childhood tortured by fear, wishing my parents would divorce, or wishing him dead. He was a scary, nasty, and handsy drunk that I could honestly say, I did not love. SO when, at my very impressionable age of 9, my Dad sobered up and ripened into a tall, dark, handsome, and rich man, I was bamboozled into falling in love. I didn’t know how to brace myself for a love like that so I just let myself fall like the naive child I was. I was totally taken by him. My heart went all fireworks every time he held my hand or gave me a hug or said something nice to me. When he wanted to be with me, when he wanted to take me on a date, I put on my best dresses and sat cross-legged across from him at fancy restaurants as I tried to be his peer, his most beloved. Sound a little weird? TOTALLY. It is weird. It’s unhealthy but kind of sweet at best and like super creepy at worst. It’s the truth, though, my father was my first all-encompassing love. And my first (arguably my only) shattering heartbreak.

In 2001, after just a few short but poignant years of sobriety, he started drinking again. There were signs. He was being cruel, and he had that look again: that feral look. I lived with an unshakable faith that my father, MY FATHER, would NEVER use again so it was very confusing for me the first night he didn’t come home. At 6 AM, on my way to school I asked my mother what happened. She said, “ I’m not sure what happened- I think Dad’s in the hospital. Maybe a car accident? He’s drinking again.” I was dumbstruck. I thought about it for the rest of the day in a sort of daze- a world where my dad drinks again? The puzzle pieces didn’t fit- it just didn’t fucking fit. I admittedly have an active and dramatic imagination, but I could have never thought up what was about to come.

2001-2003 were bad years- challenging and disorienting, but they were also the hopeful years. Yes, the downward spiral was picking up speed, and, yes, really nasty things were happening in the home, and, yes, my father was not only drinking, but also snorting coke, and not coming home and acting unstable at best but, he still had a job, and it appeared from my 15-year-old perspective that, at any minute, he’d change his mind and it could all just magically go back to “normal.” I attempted to sway him- believing if he loved me enough, he’d come around – be my knight in shinging armor again. He had an office in a dark corner of the house. It was filled with all of the expensive things that he purchased at the height of his simultaneous success and sobriety. In 2001, he sat behind a big oak desk, smoking cigarettes, clicking away at his computer, and taking business calls that he always sounded so authoritative and intelligent on. By 2003, it was a drug den. He locked the door, and left the lights out so there was always an uncertainty about whether or not he was even in there. His oak desk was now piled with clutter of all sorts and his drawers were filled with the paraphernalia of his new lifestyle. I sometimes knocked on the door. I often wondered if he was around, if he would be willing to see me- if he would maybe hold me once more, and tell me it was OK. I would write him letters and slip them under the door with high hopes of how they might affect him.

He responded to one of my letters, and I saved it all of these years. I think I saved it because it is this one piece of loose leaf that proves what he and I had together- the love we shared as father and daughter. It slipped out of a book the other day, and inspired this post. From late 2003:

Dad,
There are just some things I have on my mind that I want you to know. I want you back in my life…You haven’t hit rock bottom yet because you still have a family who loves you…don’t let that slip away. I hate seeing you do this to yourself but I believe in you. I have hope that you will pull through this. You have a problem that you understand better than any of us so all I truly get is that you are in lots of physical and mental pain. I see the anxiety and guilt in your eyes. I just ask one thing: please don’t turn your back on me and pretend I don’t see what’s going on. I see it, but I still love you soooo much and am extremely concerned about you. I just want you to know that people still care…especially me..hitting rock bottom is when you lose that. I LOVE YOU. I hope you can feel this deep in your soul. LOVE, JACKIE

and on the back of the piece of looseleaf, he returned this…

Jackie:
When did you get so smart? So mature? Sorry I am giving you this particular lesson this way. Yes, I am in a really bad place filled with fear and guilt. It’s nobody’s fault and no one can help. It’s all up to me. Unfortunately, the same things that have given me success in life bring me to this place. It’s part of who I am and I have to overcome it. There is no denial on my part. I see and feel everything which is why I will prevail! I need you to stay strong and stay on course. I feed off that. Ultimately, this will make me stronger and a better person. Don’t cry baby- let me see your strength. Show me how people like us handle things! You know what I mean- I know you do. God damn I’m proud of you! Love, Dad.

I remember reading that letter and feeling so much hope- dad was on the horizon! The very next thing I remember is Crack-the fucking Devil’s drug- I’ve never seen anything like it. That drug hijacked what was left of my father’s heart, his spirit, in the middle of the night, leaving no time for me to say my goodbyes. That letter is the last thing I have from him that resembles the man I loved. The years 2003-2005 were the most violent, destructive years we lived through. I wondered often whether my Mother would get out alive as there were ever-increasing attempts to take her out. I wondered nightly whether or not my father was alive. I heard his screams in the middle of the night (if he was home).  He’d convulse on the couch so fiercely that his crack pipe would fall out of the pocket of the terry cloth robe his body was now too frail for. If he was alive, I considered killing him myself which, by the way, I am VERY GLAD I never fully attempted.  He lost his job, our cars, our house, and my parents divorced all in those 2 years. The last engagement I saw between my parents as married people was October of 2005 when my dad said, “Jackie, there’s one last thing I want you to see me do to your mother,” and then he spit a wad of yellow phlegm right on her face so it dripped off of her nose. That was not great. See- IT’S EASY TO VILIFY MY FATHER.

I thought I walked away from all of that unaffected. It was my mission to move on and be unaffected. I numbed it- who could begin to deal with all of that garbage AND continue living a life? I talked about my past like it was some story- someone else’s life. “Yeah like that time my dad had hookers in the house and beat my mom and threatened to eat my dog,” I’d laugh while others would crane their necks in silence.  I moved 6,000 miles away from home, and I decided to be the best daughter I could be regardless of who he was. All that meant was that we maybe talked once every six months, and I sent him a “Happy Birthday” text. The last time I saw him, 2 years ago, he was so high that I swore/ hoped I was leaving him for dead, and I had NO PROBLEM leaving. Five minutes after I left him, my doctor called to let me know that my Lyme results came back still very much positive.

When I got sick and my father was what he had been for 15 years (absent and high) I fell apart. I lived, I think, with some reservation, that if I ever needed my father desperately enough, he would show up. Surely, if I got sick, he would revert back to 1999 Dad. When I had to face the reality that my father was no help whatsoever but only a hindrance to my well-being, I was faced with a level of grief so painful, I thought I’d never get over it. As a coping mechanism, I again turned to hate- vilify the asshole.  I felt and often feel the anger, but he’s not just this one thing. He’s not just “monster.”

When I found that letter, I remembered everything I ever loved about him, and I remembered how much he loved me. There was good there- there was even something innocent there, I think. I can take an eraser to my hard edges that leave no room for mistakes. I can see the whole, messy, imperfect picture. It’s weird, I know, to talk about him in the past. It’s so complicated to grieve the loss of someone who is still bodily alive…somewhere…I don’t even know where. Today, I wish he was dead just so I could talk to him. I really do miss that man- the man in that letter.

I remember my father telling me one day in 2004 while we both fiercely sucked down cigarettes in his Porsche, “The opposite of love is not hate, the opposite of love is not caring.” I TRIED so hard to not care about my Dad- just to show him. Wouldn’t it be so easy to not care? But I’m on a fucking mission to heal, and that has meant unveiling all of the nasty shit, facing it, and finding what lives underneath- an innocent, unshakable love. It also means, staying the hell away from the toxic, lunatic man he’s become. But, dammit,  I love you, Dad- can’t wait till you find peace.

Fun and Love,

Jackie

How I became High Maintenance: A Top 10 List of how Illness Changed my Life

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10. I wear therapeutic bras: That’s right. One of my bras looks like the bra Robin William’s wore to play Mrs. Doubtfire. Yes, the under garments of my sexy 28 year old body are that of a 50 year old drag queen. I started experiencing regular breast pain just months into my diagnosis. I braced myself before each hug, I couldn’t lay on my belly, and it hurt like hell to take my bra off OR put it on.I had the intuitive thought one day, “what if it’s the underwire?” It did seem like every time I had a longish stint of being braless (YEAH I’m one of those lucky bitches- I don’t need a bra) I’d notice less pain. So, I tried it out. I found a bunch of underwire free yet supportive bras and, within a month, the pain completely went away and has yet to come back. Even DURING PMS, I’m not in much pain. You can hug me, shake me, accidentally bump into me, and, most importantly, SQUEEZE me. I highly suggest both sexy underwire free bras from Free People, sports bras, and SERIOUS therapeutic bras from “True& Co”- I promise, you’re even sexier for taking care of yourself.

9. I stay caught up on current events: This might seem like something I should have been doing for the last decade but, unfortunately, I was not that person. Seven years ago, I actually thought that Newt Gingrich was a town in New England, and I was like, “what’s all the fuss about Newt Gingrich- must be like the Hamptons’ of Maine.” I didn’t even know New England was a part of America until I was like 12 when my father suggested I attend college in “New England” and I cried because I didn’t want to be across the ocean. Geography is not my strong suit. So it’s pretty shocking that, these days, I’m the super annoying person that’s all, “Did you hear about Putin? The shooting? The blizzard? the oscars? Paris? Syria? Isis? Donald fucking Trump. Ted Cruz is a canadian. David Bowie is dead. Theres a new show coming to BBC, BERNIE SANDERS, abortion, immigration….” I often want to talk about the news because it’s the first time in my life I know what’s going on so I’m gonna capitalize on that shit. With illness, came a lot of time on my hands and some extra curiosity. Turns out, it’s VERY simple to stay in the loop. NY Times emails, Twitter, and some NPR, and you are swimming in information. All I really needed was a reason to sit still and Lyme Disease gave me an excess of that.

8. Phone Time: You probably loathe the idea of calling a customer service rep about something- OH just the thought of listening to that atrocious hold music that makes you question whether or not you even want a phone anymore! Yeah, it’s the worst. It’s also a part of my daily life. My speed dial consists of the phone numbers of my medical insurance, doctor’s offices, pharmacies, and my assigned case workers at various government- run agencies. It’s exhausting and, at a certain point, these calls are unproductive and actually harmful to my well-being. Therefore, I limit my calls- I can no longer attack these institutions with incessant dialing and yelling. Instead, I balance. I make one call, maybe two , a day and then spend the rest of my day not thinking about my medical “to-do’s.” I’m a lucky MOFO with lots of friends which means that outside of these “hours of operation” calls, my phone buzzes constantly. You know that airplane mode button on your nifty little device- the one that makes you appear off the damn grid. I USE IT- often. I’m an airplane mode PRO. When I need quiet time, decompressing time, or time to just be unavailable, I swipe up, click left, and take a deep breath. My phone is almost never on past 10 pm or before 10 am. Nothing is urgent enough for me- I am not the President…of anything.

7. I breathe (more deeply, and more frequently): I’m a distracted, fidgety, impatient, and excitable human, and that has been my lifelong default setting. Even when I had time to sit still or relax, I couldn’t focus. When I moved to LA at 24, my restlessness reached a new extreme. I stopped reading, watching TV, meditating, writing, or like, just sitting. I had so much extra anxiety which I medicated with work and exercise– I worked about 4 different jobs, and in between shifts went rollerblading, conquered the rings, took hot yoga, went running, and discovered new trails to explore. I did anything that induced emotional numbing via movement. I mean, I was avoiding my wildly painful grief and heartbreak-  my body was incredibly smart. I sit still today. I need to. First, it was forced and felt like torture. Now, it’s voluntary and I often enjoy it.  I need quiet time. I write for about 2 hours every morning. I average about 45 minutes of reading everyday, an hour of TV time, and 10 minutes of meditation. AT some point, every afternoon, I put my phone in airplane mode and nothing is allowed except a book or TV for one hour. I get more done now, too. Who knew?

6. I’m much tidier: About a year into being sick, I got the advice to make my home a serene, healing environment that I loved being in. I hadn’t had a “serene” environment pretty much ever in my life (except for those 2 years I lived on Maui). I grew up in chaos, and, as an adult, I was NEVER home (see number 7) so I didn’t need a nice environment. I was also a total hoarder- a saver of everything that might have the slightest meaning. I lived in survival mode so I was always like, “I might need that one day!” Things were cluttered, confused, and chaotic. Not anymore! I’m creating a peaceful, joyful, and organized living space for myself. I put things away when I’m done with them, hang my jackets up when I get home, I almost always know where my keys are, and I open bills as soon as they come in. I throw things away or GIVE THEM AWAY as soon as I no longer need them, AND..I make my damn bed daily! Marie Kondo, the NYT bestselling author of, “The Life-Changing Magic of Tidying Up,” has been my main source of inspiration. Check her out! I no longer have the luxury of making a mess and being OK with it.

5.What I spend my money on- Gone are the days of reckless spending on that shirt, that trip, and those shoes. Today, almost all of my money gets spent on supplements (hundreds of dollars a month), natural treatments like acupucture, and the most expensive food in the market. It’s hard to hustle which means it’s hard to have an excess of money to spend, and, when there is some extra money, I’m way more excited about that juice cleanse, or spirulina powder than I am about the Jeffrey Campbell shoes. I DO, of course, occasionally buy something for fun, or take a trip, but it’s always well thought out. I buy it because it brings me the kind of joy that will, in fact, enhance my physical, mental or spiritual wellbeing.  It’s unreasonably expensive to keep myself alive which brings us to..

4. FOOD- I grew up with a mother who told me “raisinets” were healthy because “at least they have raisins in them.” I grew up on powdered soups and the occasional steak or meatloaf dinner. I loved creamed spinach and creamed corn, and I considered these excessively healthy options. So, when I entered my late teens and started eating Kale, quinoa, veggie burgers, cottage cheese, almonds, and fruit, by god, I thought I couldn’t get healthier. I mean, I was a pack a day smoker but kale cancels that out, right? I had no idea what the world of wellness and clean eating actually looked like. The exclusions in my diet, today, were strategically made to 1,) starve Lyme and inflammation/ keep my body in an alkaline state and 2.) to rebuild my immune system so it can work it’s magic. I do not consume any eggs, pork, gluten, dairy, sugar, canola oil, MSG, natural flavors, corn, soy, or citric acid. This means that I read every ingredient label detecting for one of these ingredients and, if it’s on there, I don’t eat it. It’s intense. Go try to buy an in store hummus or frozen veggie patty that has no canola oil, citric acid, eggs, or soy in them. It’s hard AND expensive. What I find surprising, though, is the consistent follow-up question I’m posed with, “what DO you eat?” I mean, I eat everything that isn’t on that list which is like more foods than I could possibly fit into this paragraph. I eat organic veggies, fruit, grains, legumes, oils, meats, nuts, seeds, nut butters, and my signature 2 raw cloves of garlic a day. Yeah, I stink. I drink enough water to have earned the nickname, “Hydration bully,” and i also love me some coconut water or celery juice. But let’s get really real: I drink coffee- it’s pretty much the most joyful substance in my life, I eat potato chips that are like organic and made with coconut oil (but still..) and sometimes I cheat BIG: I’ll just say “fuck it,” and house an “In N Out” burger, or pizza, or ramen, or a cupcake, or movie theater popcorn WITH butter. It’s rare that I cheat BIG because it’s totally not worth the follow-up pain, but I don’t want to pretend to do this stuff perfectly..

3. I’m softer : UHM NO- I am not talking about my atrophying muscles, inner critic, but thanks for the reminder. GEEZ, sometimes my head is such an asshole. What I have is a softer heart and outlook- a softer experience around my own humanity and yours. Pre- illness, I could be harsh and judgmental of the human experience. My standards for humanity were irrational, unreasonable, IMMORTAL. I blamed people for their suffering, “they brought it on themselves, that will never happen to me” kind of attitude. For example, a few years back, I was very good friends with a woman who was struggling with an unknown illness, and I suggested that if she simply leave her destructive romantic relationship, she’d probably get better. Sure, I do believe that toxic relationships can do great harm to the body, but, in the end, I was blaming her. I wanted it to be her fault that she was sick. Nobody, I repeat, NOBODY, wants to be sick. I’m not so scared of human experiences today. When people tell me about their divorce, illness, miscarriage, abortion, heartbreak, financial trouble, etc.. I feel for them and hold a loving space for them. Look into Dr. Brene Brown’s talk on empathy vs. sympathy. Being sick taught me a shit load about true empathy. Today, I’m also not as demanding of myself or others. People are allowed to make mistakes in my world today. Even more importantly, I AM allowed to make mistakes today. We really are all just doing the best we can. Here’s to an imperfect practice of this thing called life!

2.Aint Nobody Got Time For That!: AKA: I have a very limited number of fucks to give. OR, the more popular phrase, I have a limited number of “spoons.”  The “spoonie” term and theory was deveoped by Christine Miserandino and is now used worldwide by sick and suffering people to describe the sensation I am calling “a limited number of fucks to give.” When you are a healthy person, each day comes with an unlimited number of possibilities, but when you have something like chronic illness dictating how many possibilities you get that day, you are a “spoonie.” The idea is that we wake up in the morning with just a few spoons to use and each time we use one, we’ve got one less- our energy is a little more depleted. So we have to be strategic every. single. day. My strategy: I do not welcome anything into my life that doesn’t support me emotionally, mentally, or physically. I’m on a mission for total wellness. If it doesn’t enhance my spirit or my health, it GOES. For me, that included a few relationships- those hurt the most. The best advice I ever got around illness is this: “Do what feels good all day long.” It’s amazing how when I started focusing on only the things that feel good, how much more I started saying NO to people, and how much started falling away from my life. When it was life or death and I was forced to put my every action under a magnifying glass, I realized that I was engaging in a lot that didn’t ultimately serve my highest purpose. What an incredible awareness!

1.I’m an insomniac- I have NEVER had sleep issues. I didn’t know jack about how painful insomnia was. My brother, on the other hand, has been suffering from it all of his life. When I was a kid, I’d wake up all casually well rested (like an asshole) and I’d pass by my brother’s room and see him in some sort of rotated, mutated form, looking like a wild animal that had taken a tranquilizer dart to the face mid outburst and finally, with one last squeal, passed out. He could never wake up in time, he was always moody, and I judged him. No wonder he hated me. When I got sick with Lyme, it came on slowly. First, I just couldn’t sleep through the morning sun. Then, I had a hard time falling asleep. And then, nine months later, I STOPPED SLEEPING. First I tried household drugs: Nyquil, benedryl, and dramamine- sometimes, feeling desperation around 3 am, a combination of a few. Nothing worked. I was now not only sick, and on zero sleep but also heavily drugged and emotional. I started crying all of the time- just constantly. My good friend always reminded me that sleep deprivation is a legitimate form of torture used by military systems worldwide. It’s true- watch Zero Dark Thirty, or Homeland- sleep deprivation is the first tactic. Just imagine being more exhausted than you’ve ever been and incapable of sleeping for nights on end. People are always confused, “But if you’re exhausted all of the time, shouldn’t you just be able to sleep?” Jonathan Franzen says in The Corrections, “his tiredness hurt so much it kept him awake..”  That’s what it’s like. My face hurt, my body hurt, my anxiety was unmanageable. When it came time to try to sleep, it felt like Satan was taking control of my body. I’m NOT kidding. To date, I have been prescribed Trazadone, Ambien, Valium, Kolonipin, and tried every natural version of sleep medicine you can name. I have had varying experiences with each drug. Nothing truly worked, guys- not until I started getting healthier. I could be awake for a full 60 hours in terrible flares. I could have walked 5 miles in a day, or done yoga, meditated, stretched, had no caffeine, done an infrared sauna, not eaten for 3 hours before bed, watched something soothing, listened to whale music, classical music, EMDR, focused on my breath, prayed my ass off and/ or done ALL of those in one day AND, STILL, NO SLEEP. Any solution you had for me, I tried. These also came with varying degrees of success rates. I’ve done yoga, taken a hot bath, popped a valium, then had my back rubbed while I was sung to and, GUESS WHAT, NO SLEEP. That shit is rough. Today, I sleep. I don’t sleep well necessarily, but I mostly sleep. Sometimes it’s with the assistance of Valium but more often it’s with “Tranquil Sleep-” the most potent natural sleep aid. I focus on my breathing, I don’t let the negative thoughts take over, BUT, when I’m in super bad shape physically, I still can’t sleep. IT’S PART OF THE ILLNESS, and it sucks. I repeat- the MAIN thing that has made my sleep better was getting healthier. I beg of you, be compassionate and understanding and loving towards people who cannot sleep (whether they are sick or not)- including yourself.
If you stuck with me for this long and read all of those then I have a little gift for you. I have a number “zero” bonus feature. Guess what I talk about now more than ever in my whole damn life? Did you guess Bowel Movements? That’s right. Us sick folk are just CONSTANTLY being asked how our bowel movements are. And then, we start talking about it together or doing things like coffee enemas. My dear friend and business partner for “wellness companions” sent me a coffee enema kit and said, “we can Skype for your first one in case you need help!” NOTHING WEIRD HERE, GUYS… just all of us trying to manage our own shit and stuff.

With Fun and Love,

Jackie.

Ru Paul “Rules”:

My dear friend spent his weekend at “DragCon,” in Downtown Los Angeles,  where all of the famous Drag Queens from “Ru Paul’s Drag Race” gathered to inspire all of those who have that extra splash of color to their inner rainbow. Or maybe the Queens were gathering for the financial profit- doesn’t matter. When I was asked if I wanted a souvenir from the event, I frantically said, “yes! yes- anything that says, ‘if you can’t love yourself how in the hell are you gonna love somebody else?’ duh! ”

I got home last night after an awful Mother’s Day, feeling all depleted,  and this poster sat on my bed. I yelped. I squealed, “Ian! Look what I got!!!” My “on- the- spot happy” was in rage.  I just so happened to have a perfect sized frame that had my “vision board” in it. With no regret, I tore the vision board out and put my new poster in. THIS pretty much covers the idea behind every magazine clipping I carefully placed on that new agey creation, anyway.  Within 5 minutes, it was framed, and I was like, “This is going to go right above my bed!” And Ian, the boyfriend, was like, “Remember that time I bought you an iPad and you were just like, ‘cool, thanks.’ I’ve never seen you so excited about something.” It’s true.

BEST PART: the poster was free. No financial profit was had. SECOND BEST PART: Read the first paragraph from my post entitled “Read This” from  5 days ago- I talk about this exact quote.

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WITH FUN AND LOVE, Jackie Shea inspired by Ru.

I DON’T LIE.

If you read my post yesterday, you know about that time I went hiking in $5.00, child-size, Calvin Klein boxer briefs AND my boots. Here’s a photo of that for your enjoyment:

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If you read my post yesterday, you know that I’m still grieving my trusty, rusty hiking boots that served me well for like 7 years. Thanks, BOOTS. Thanks for keeping me safe, giving me the nickname ‘boots,’ and for always making me feel damn sexy and wild. RIP.

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Read This

L1130949Since the beginning of time, unclothed people of all races and all places were preaching what the Beatles put into pop music centuries later: “All you need is love, love, love is all you need.” Today the message is everywhere. It’s in the cliché, framed decors from Target, hanging in the hallway of many suburban homes, reading something like, “Love is patient, love is kind, love never hurts..” It’s spray painted it on buildings or tattooed  on flesh. We hear Ru Paul every week on Ru Paul’s Drag Race say, “If you can’t love yourself, how IN THE HELL you ever gonna love somebody else? NOW, she knows something about love (if you’re not watching Ru Paul’s Drag Race, get on it people, it’s the ONLY reality show offering a colorful spiritual experience). There are countless books on the subject of love, yoga teachers are preaching it (probably in Sanskrit so you don’t understand, but you’re all “Namaste” anyway), the person guiding your meditation is like, “send love out reverberating through the room, the city, the world” And you’re probably like, “MMMMM love… I’m starving, my legs are numb, I need to do the dishes, I want a manicure, oh I should check my bank balance. Bring it back. mmmmm love…I have to pee” I have a friend who completely beat Lyme Disease say, “people always ask me what got me well, and, the truth is, I think love got me well. Love heals.” Love heals.  Good news: I, too, am a lover of love. I, too, believe that love heals. In fact, I KNOW it does, and it’s not all that complicated.

It was just a month ago. I went north to Ojai, CA, for the day to meet my boyfriend, Ian, on one of his cycling routes. Ojai is a picturesque, lazy little town. It’s encased by beautiful mountains and populated by the down-to-earth wealthy – each shop on the main strip closes by 5 pm which is when all of the locals eat their home cooked vegan meals, read, and go to sleep. The non locals are there to camp, to visit the hot springs, to hike, to “adventure.” I have a really hard time in “adventuring climates” these days. I was a pro, low maintenance adventurer – all I needed was my hiking boots and I’d figure the rest out as I went. One time, I  hiked in a pair of children sized CK boxer briefs because that was all that I could find on a whim, but I had my trusty hiking boots. They were my companions, my symbol of freedom –  freedom to go and be wherever, whenever. It looks DIFFERENT now. Those boots are gone and my new ones are 6 months old and still look new. The mountains mock me, I swear. They tease me like childhood playmates, “Hahahah ,You’re not well enough to enjoy this giant playground. You just stay in your TIME-OUT and watch all of the others have all the fun.” I mourn the girl I once was.

I know enough now to know that ANY “getaway” has the potential to cause this deep sadness which, in effect, causes more symptoms. I feel my cells get tired from the depression and I watch my body, piece by piece, fall into the darkness of the STORY, “I’m never going to get better. I’m never going to be spunky and fun and ABLE again. I want to climb those mountains and I can’t. This is some sort of cruel joke. I want to be free. Please let me be free.” And, every time I create this particular story, that’s when I start to cry. Gets me every time. I mean, who wouldn’t sob with a story like that rolling around in their brain? My mission, on this trip to Ojai, was to avoid the story and just enjoy the sunshine.

It was a FAIL. I met up with Ian already fatigued. I felt ugly and isolated from all of the smiling tourists. I felt isolated from the sunshine. Ian is annoyingly unswayed by my little tantrums and suggested we get food. With my head down I was like, “whatever. sure. I mean, fine. I guess I should eat. I hate everyone.” That’s what came out of my mouth, and in my head, I was like, “Please stop this train. You don’t need to go into this feeling,” and I’m praying and I’m talking to my inner child (YUP- IT WORKS) , and I was considering just leaving because maybe I just couldn’t handle it today. Nothing was working- I went down the rabbit hole quickly and ungracefully. By the time we sat down to eat, I had reached that tear- jerker part of the story that I mentioned earlier, and I was crying. Mostly anxiously sniffling and feeling the sweat on my palms build up while I stared out of the cafe window, watching the world I didn’t feel apart of. Ian got quiet which made me MUCH MORE ANXIOUS because now I’m like, “great AND he’s going to break up with me because I can’t pull myself together and I’m no fun to be with and I can’t climb the mountains with him and I’m the worst.” And, THAT , is precisely when I start weeping. That is ALWAYS the final sentence in my tragic story. There’s no further to fall. Now, as far as my head tells me, I’m going to be sick forever AND alone.

I had maybe managed to chew and swallow three fork loads of a NOT gourmet salad in-between tears. I kept my head down, shamefully, and asked for a to-go box the next time the waitress came over. My head was wild with thoughts, “do I go home? do I fight through? HOW AM I EVER GOING TO BEAT THIS ONE? I’M IN TOO DEEP.”

The to go box was gently placed in front of me by a smiling waitress, “here you go!” I opened it to find a folded, uncolored coloring page- the kind that the diner offers to children with the hope of keeping them occupied. Written in big letters with crayon, it said, ‘READ THIS.” I really love surprises, so I unfolded it intently, and it read, “DON’T CRY. YOU ARE LOVED.” I immediately broke into hunched over, uncontrollable sobs. The world had reached out, put its arms around me, and gave me a great, big, warm bear hug. I felt safe enough to cry in its shoulder. The sunshine I had felt isolated from radiated around me. I smiled, first while crying, and then calmly. I glanced towards the waitress with my hand on my heart, “thank you,” I mouthed.Image-1-2

The mountains looked beautiful. I took photos, including that self-portrait of me up there, with my wings, in the woods. I interacted with Ian gracefully and lovingly – we even found time and energy to play hot lava. Near the end of the day, I said, “that note saved the day. Have you noticed how much lighter I’ve been since I got that note? That it was ALL i needed?” It WAS magic. He said, “Yeah, I should have thought of doing that myself.” Yeah, no kidding, Ian, get it together. Just kidding- that dude is a rock star of the love.

I make it a practice to never under-estimate the seemingly tiny things we do that can have an impact like that. That one little note made me smile, which made Ian smile and will likely make YOU smile. Maybe your heart will feel lighter now, too. Maybe you will have a better day. That waitress, I don’t even know her name, is still saving the day with her love. It works, and sometimes it’s that simple, “All you need is love, love, love is all you need.”