On Mucus, Urine, and Peace

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Mucus:

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

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

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I Don’t Want to Lock up my Feelings

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When I was home for the holidays, a basket full of papers and old chachkies was handed to me. I was meant to sort through it and throw stuff out. It was like a grab-bag of old family memories—things that brought a smile to my face, others that made me grimace. I pulled out a purple book, decorated with Esmerelda from the Hunchback of Notre Dame. I immediately recognized it as the first journal I ever kept—I was 11. An age that I was unafraid of my passions, an age that offered a soft FULL heart and a spirt that, as an adult, I can’t quite find. As I read some of the brilliantly sweet things I wrote, I felt sad that I ended up taking such a violent detour, I felt inspired by my young self, and I laughed…hard.

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East Coasting: A Photo Essay

Ian and I travel

Following up with last week’s post, this is an update of how it’s been going on the East Coast. In summary: better than expected! I’ve been almost myself. It’s been exciting to watch myself do a lot of the things that I couldn’t do even six months ago.

Getting off of the plane last week, I walked right past the wheelchairs and smiled. I didn’t just not NEED a wheelchair;  I HAD ENERGY- like plenty of it. Ian and I went to sleep at my Grandmother’s that night. Oma came out to greet us on the special corner where her home sits in the urban sticks. The corner I played on, ate Mr. Softee on, talked to all of the neighbors on, hung out with Alley (our childhood dog) on, and eventually departed on. It’s the corner I did all of my leaving from. Every time I got on a plane, it was from there, a diagonal shot from the front door to the cab, I said goodbye. When I moved to Hawaii, when I’d go home to Hawaii and eventually LA- that’s where I said goodbye. I’ve said countless hellos and goodbyes on that corner. It’s the corner that holds all of my “I love you’s.” I’ve said those words so many times right there, I bet the concrete holds some of my heart.

Ian and I got out of our cab and I said it again, “Oma! You’re so little. I love you. I’ve missed you.” Of course, even at midnight, Oma had food for us. It’s VERY hard for her to understand the extreme diet I have. I mean she’s 85 AND German so to her being gluten free, sugar free, and dairy free means I eat whole wheat tortillas, honey nut cheerios, and “those hairy fruits I bought for you- what are they called- kivis?” My heart really swelled for the effort.

I asked her to take a picture with Ian and she yelled at me. Then later, apologized profusely because she didn’t realize I wanted a picture of her AND Ian, “Oh boy, I hope I didn’t offend him,” she said. I got one anyway.

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We went to Lyme, Connecticut the next morning. That’s right, Ian’s family is from LYME, and, yes, that IS where Lyme Disease gets its name from.

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I imagine that photo above is what it would look like if we traveled together. I took this photo so the paper is merely a prop, BUT I was totally reading it at some point.

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At the Lyme Beach Club, Ian taught me how to catch crabs. I squealed like a scared little shit, but I got a great photo.

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We ate THE BEST Lobster rolls at this joint, and RANDOMLY this little New England beach town joint had GLUTEN FREE rolls. Very exciting.

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We took Amtrak back to Manhattan in the rain.

In the heat of deep Brooklyn, we took a walk and stopped to cool off like a couple of NYC kids. Ian found White Castle super entertaining. We consumed none of their food FYI. Ian left for Germany a few hours later, and we said our goodbyes and “I love yous”  on that precious corner before he got in a cab.

That evening, Juliette and I reunited and did what we like to do: we ate some real fucking food. Well, we ate real food that Juliette crafted masterfully for us in a Brooklyn apartment with the perfect view of NYC.

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Michael, who just so happens to live in Oma’s neighborhood came to hang the next day. Michael and I worked together on a feature film 10 years ago. Reminiscing about our time together and making new memories, we laughed and laughed AND did a photoshoot.

I got to spend time with my Aunt and Uncle. I haven’t seen them in over two years, and FINALLY, for the first time ever, I saw my Uncle’s band, The Smoking Gun, play in the Hampton Bays at this small-town, water front bar and grill. My Mother came out, and we DANCED. You guys- look at me –  Killin’ it with the healthy. My Uncle’s band was so good. To be honest, knowing how talented he is and what kind of music he likes, I thought I was going to get stuck listening to some eccentric jazz music which I WAS NOT excited about, but I was totally freaking wrong. If I had known how much fun it was to see them, I would have gone about 10 years ago. My Aunt showered me with gifts and my Uncle showed me 600 photos from their recent trip to Peru and Ecuador. At photo 200, I was sorry I asked to see any 🙂

Back in Brooklyn, Jessica came to visit me. My oldest friend, and my chosen sister, she loved on me for 2 days. I forced her to do my hair for a few hours and cuddle me which she HATES. Jessica also hates sleeping with me because I like closeness and I’m a mover and a shaker. Also, I talk in my sleep and stuff, but she slept with me anyway – with a giant pillow between us so she had her own space.

In an attempt to throw some shit away at my Grandmother’s, I started taking a trip down memory lane. AKA: MY HORRIFYING PAST.

First of all, that photo of me in the red sunglasses was NOT TAKEN ON HALLOWEEN, nor was it a “joke photo.” That’s just how I dressed. Also, it is a representation of how hard it was to take drunk selfies before the iPhone. That upper photo pretty much represents me as a teenager- drunk and peeing and pouring shampoo on my dear friend who was stuck in the bathtub? And lastly, I graduated from High School which is almost shocking considering that looking at my report cards, I pretty much did poorly ALWAYS in EVERYTHING except drama. But I celebrated graduating with my tongue out – of course.

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Pretty normal. Check out those tights. They’re for 80 year olds- just looks like I have a bunch of sagging skin or something. Jessica calls this my young “stripper pose.”

And also just the proof that my Brother has disliked me for a very long time.  “The Easter Bunny That Ate my Sister” is a 10 page intricate story WITH vivid illustrations. “I wondered why the Bunny ate my sister and not my pet snakes or something,” he writes. Gee, I don’t know, it’s YOUR STORY, and it could have gone down however you wanted.

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I found this book in the very same box that held my parent’s wedding album.  So that was funny.

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And this is what I’ve mostly been doing the whole time – hanging with my childhood “best friend”/ “daughter”/ “baby”/ “Victoria”/ DOLL. Nothing weird here, guys. Her eyes just look weird because I gave her “pink eye” like 20 years ago and then didn’t actually know how to fix it, but she’s doing great otherwise. SUPER NORMAL.

Check me out, living life and stuff.  Just a few more days of New York loving then another “I love you, Oma” on my home base corner and off to Los Angeles for IVIG treatment number 4!

Fun and Love,

Jackie

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Health Tip Tuesday: Eat Garlic

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Consuming raw garlic works as a natural antibiotic! Amazing, right? It fights fungal infections AND yeast which I found so fascinating and exciting AND curious that one time I stuck a clove of garlic up my vagina ..and that’s how I ended up LOSING a whole clove of garlic up my vagina. Apparently you can stick a clove up there if you’re worried about yeast infections so I did just for funnies, and then I LOST IT. Definitely, be sure to attach a thread or cheese cloth to the garlic.

The way I consume garlic these days (everyday, actually- so I ALWAYS smell like garlic) is by crushing it up and putting it on top of salads with olive oil and avocado.

It’s always one of my main suggestions especially for Lyme suffers.

Here is a link to some helpful garlic-consuming-instructions to follow:

Avoid These 6 Common Mistakes When Using Garlic As an Antibiotic

PS: That photo up there is me shouting at my friend Eric, “I lost the garlic!”

Fun and Love,

Jackie

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10 Things my Mother Taught Me:

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10. On Anatomy: How to use a tampon: I was a late bloomer; I didn’t get my period until I was nearing 14. I had also been lying about having it for some time since it was considered heinous in my junior high to not have to visit the bathroom every 2 hours to change your tampon (a bloody piece of cotton you stuffed inside yourself aka: the symbol of womanhood)? So, when I did finally pop, it was very exciting… UNTIL I was invited over to my best friend’s house to go in the pool during “that time of the month”— I couldn’t simply go for a swim. Enter..My first attempt at THE TAMPON. My mother brought some “OB’s” into the bathroom, handed me one then waited outside the door for me to finish. “WHAT HOLE DO I PUT IT IN?” I shouted. Ah, the days of innocence, when I didn’t know where that hole was. “Not the hole you pee out of,” she said. “I can’t find it…oh wait I think I found it… now what?” “Now you push it in.” OW. Was she kidding? NOPE. NO WAY. Nothing should go in there. “It can’t be that hole, it hurts too much—can you just help me…doesn’t water stop the bleeding anyway?” “No, you have to use a tampon,” she said, “It might be easier if you lay on your back.”  I needed more space -that’s how we ended up in my bedroom. We tried every size, every kind of tampon, and every position the physical form could possibly endure. I was frustrated. “Can’t you just do it for me?” I finally asked all shameless and stuff. She paused, exhaled, deliberated, scrunched her face and said, “no.” I can’t even remember if we (I ) got the tampon in that day, but we both learned very important things: I learned which hole to put it in, and she learned that I was still a virgin.

9.On the Arts: Music (i.e Michael Jackson is a man): My mother wasn’t/ isn’t known for her cleanliness. The way I knew it was tidying time was when the music was on and my mom was dancing and singing around the house. She’d do a one two step, and then fluff a pillow. One two step, snap her fingers, sway, and wipe something off. While she shuffled, I was very busy in an imaginary life more satisfying than that reality. One day, however, I heard a sudden burst of , “A BOO BA BOO BA BOO. a boo ba boo ba boo,” which threatened the fun even my own imagination could have. It won me over, “who is this? I love her,” I said and started dancing with my mom. “It’s not a girl..that’s a boys voice — it’s Michael Jackson and the Jackson 5. The song is called ABC.” Obnoxiously, now jumping around with my mom, I said, “THAT’S A BOOOYYY?” If it wasn’t The Jackson 5, it was Stevie Wonder, Sinead O’Connor, Tom Petty, Lucinda Williams, Ricki Lee Jones, The Eagles, The Rolling Stones, or Joni Mitchell. Oh, and I LOVED JONI. There were always Joni Mitchell and Ricki Lee Jones CD’s in my Mom’s car, and I could never remember which one I liked. I accidentally slipped in Ricki Lee Jones expecting to hear “Big Yellow Taxi” once and was apparently nearly traumatized, “THIS is not the woman who sings about the mean old daddy, is it? I want the one who sings about the mean old daddy.”  Joni sings about the mean old daddy and the milk and toast and honey, too. Ricki Lee Jones sings about nothing because I can’t understand anything she says. So my mom taught me some of the artists I don’t like as well.

8. On Safety: Kidnappers have all kinds of tricks: YUP. I guess parents have to teach us this stuff, huh? One night, IN THE DARK, we were walking to the car in a quiet, suburban grocery store parking lot (already scary), and my mother casually said, “Now be careful, kidnappers have a new way of getting kids— they’ve been hiding under cars so at night they grab your ankles and take you before you get in the car.” I must have lost color in my face and maybe like never gained it back? Here I am, 28, still thinking about it; If I walk to the car alone at night, I walk haltingly. I tremble inside a little trying to get in the car before the monster under the car can catch my ankles and eat me or something? Also, what an incredibly dumb move, kidnappers..what if you miss your 10 seconds of ankle vulnerability? Do you just get run over?? Nonetheless, thanks for this gem, Mom—it has literally been of zero help.

7. On Health: Drinking too much water can kill you: I drink a lot of water, and I highly suggest everyone drink a lot of water. When I ask my mother how much water she drinks, she says things like, “Well there’s ice in the coca cola I drink- that counts you know.” And then I get on her, “that does not count and that is not enough water.” And one day, in the middle of one of these arguments where I was being self-righteous about hydration my mom said, “You’re such a hydration-bully, you know drinking too much water can kill you…you have to be careful, you can flood your brain with too many fluids.” COOL. WHAT? I did my research and, yes, it’s true, an obscene amount of water CAN kill you—it’s incredibly rare and very difficult to consume the amount of water it takes unless you’re doing a ton of physical activity. Later on, I asked my mom where she came to the conclusion that water is fatal and she said, “Oh I don’t know, my father saw it on the news once and always warned us because it really scared him so I guess that’s where.” And that is how “anxiety disorders” have gotten passed down from generation to generation.

6. On Grammar: The word is “proposed,” and pronounce your T’s: When I was a “cute” (actually I was considered ugly) little girl totally obsessed with marriage and babies (actually, I still am), I would take note any time somebody got engaged by stating,”He engaged to her, mom!” Or I would ask, “OOO, did he engage to her?” And, every single time, my mother would remind me with increasing frustration, “The word is proposed. He proposed. He proposed. He proposed. They GOT engaged.” huh, what’s this alien word proposed? That’s how I processed that information. It’s a good thing it sunk in at some point because I’m pretty sure Ian would be rethinking engaging to me if I still said that shit. The other thing she really gets on me about is the pronunciation of T’s. Getting very dramatic and aggressive every time a T is missed, putting on her best lazy, valley girl teenager body language and repeating, “it’s not Clin—iiinn,” and then changing to an upright professor who fucking took Shakespeare for a decade or something and says, “It’s ClinTon.” I don’t know why this has come up so many times around Bill and Hillary, but it has. Considering, I’m the only one in my immediate family who does not have a New York accent, I find this terribly annoying yet totally EFFECTIVE. I never want to miss a T around her— god forbid she shames me for being some ghetto valley girl. Moms are so annoying.

5. On hygiene: The more you shave, the hairier you’ll get: I shaved for the first time in the fifth grade because I was curious, sneaky, and trying to get an in on the popular kids. I sat in the bathtub, found a razor (it was probably rusty) and shaved. Afterwards, I ran downstairs all excited, “MOMMMMM!!! guess whaaaaaaat, I shaved, I shaved, I shaved!” I thought she’d be proud of me and say something like, “Oh wow! good job!” But, instead, her face morphed, she put a hand over her eyes like she just couldn’t take another problem in this house then slapped her leg and yelled, “WHY? You don’t need to shave, why would you do that without asking? You know… the more you shave, the hairier you get.” I was like, “WHAAAATTT? Seriously??” She reminded me again and again for the next five years until there were bigger problems like my Dad’s crack addiction. Many years later, I asked, “Why did you get so upset when I shaved for the first time?” And my Mother said, “Oh, I don’t know, I think I just wanted to be there with you. Also, now they’re saying that whole theory on shaving making you hairier is actually a myth so..” Oh, cool, more unnecessary anxiety.

4. On Cleanliness: Getting in bed with your jeans on is disgusting: Again, my mother is not known for her cleanliness or organization skills so when there is something that bothers her, my ears really spike up. We lived in NYC together so all day long, your body comes into contact with the most disgusting things like subway seats and other things that a million other people touched that day and haven’t been cleaned in a decade. Not to mention, that I would wear jeans like 6 times before actually washing them because who wants to go to the laundromat?? When I’d crawl into bed with my jeans on to read a book, my mother would say, “EW. your jeans have been touching subway seats all day, don’t sit in my bed with them.” It’s like her one ‘tidiness’ pet peeve, AND, I have to say, I appreciated this lesson. It’s true. That is fucking disgusting.

3. On Classic American Sayings: “I need this like I need a hole in my head”: It’s a good saying— very clear. When I write my book, this will be the title of the chapter on my childhood. It pretty much sums it all up. My dad was a maniac and all, but my mom had a lot more presence in my life. Her reactions to the storm were just as horrifying as the storm itself some days. She’d be so sad and so angry, repeating day in and day out, “I need this like I need a hole in my head.” And I didn’t understand it or know what it meant, but it was always my cue that mom was in a wicked bad mood and most likely dad was the reason for it and DEFINITELY everything would be better if I wasn’t alive. Too dark? too bad.

2. On SEX: How to give a blowjob: OK OK. That was for dramatic effect- she didn’t give me a visual tutorial or anything. But I DID request and receive in depth instructions. It’s not her fault, I was curious and an incredibly persistent MOFO; I would get the answers I was looking for. I came home from school one day. It had been another long day of pretending that I knew what the cool kids were talking about when they said words or phrases I had never heard in my life. I was 12, a little confused, and had enough. I confronted my mother in the basement while she was in the middle of her 25th viewing of Annie Hall and cracking open her 100th sunflower seed. I sat on the coffee table and said, Mom I have some serious questions..” Naievly, she said, “OK,” paused Woody Allen, and  got catapulted into a world even more uncomfortable than his affair with his step-daughter. I took it as far as I could, not letting her off the hook, “So, how do you get him hard again? Oh it needs to be hard before you have sex? You put your mouth on it and like all the way in? And so then he puts his mouth on your vagina? And that feels good? That’s what getting eaten out means?” Oh, it went on for an hour, at least. As uncomfortable as she was, she winced through the answers to every question including, “So you do this with dad?” EVERY MOTHER’S DREAM DAUGHTER.

1.On Strength, and Courage: Never give in to panic attacks– This is the most profound thing my mother ever taught me, and, in my opinion, her greatest accomplishment as my Mother. I may have been a late-blooming-menstruator; but panic attacks invaded my brain at the ripe young age of .. ten. The thing that set me off: I found out Mama Cass died choking on a ham sandwich and thought, what if I choke during lunch at school and nobody hears me? I spent the next couple years crying through classes, begging to go home, going through stints of not eating, and trying to convince myself that I was safe. But I was a child with no real life references that made me believe I was safe. My father was a real dick about it, but my mother would hold me in bed at night as I sobbed, “I’d rather have anything else but this. I’d rather have cancer.” No kidding— I have been in physical hell for over 2 years, and I would never trade it in for a life of panic attacks. My Mom had her own debilitating past/present struggles with panic attacks;  her knowledge and compassion were indispensable. All of my peers thought I was certifiable, but my mother kept explaining, AND she kept making me show up for life— she never bailed me out. My turning point was 7th grade field day. That morning, I had a wicked outbreak of panic. I was hysterical, “I’m not going, don’t make me go, I can’t go, please mom, please mom,” unable to breathe, I was pleading. I think I ended up in the closet at some point. My mom said, “You have to go, you cannot let anxiety win. I promise—if there was anything dangerous about this field day then I would not let you go. Please trust me.” I sort of did trust her but the panic was stronger. In the end, I was forced to get on the stupid bus. I went unhappily and full of terror.The kicker?  I had a fantastic day; I even won a first place ribbon for track. I’ll never forget running that track, feeling free or running through my door that afternoon shouting, “Mom . mom, I had the best day thank you so much for making me go!” And she said, “see that!” That was it. Anxiety has never controlled me. I moved to Hawaii, I moved to LA, and I’ve done everything in between that has ever scared me. Best part, I do not suffer from panic attacks anymore. I have shit loads of anxiety (SO DIFFERENT), but the beast that controlled me for so many years on and off has dissipated. I pass this on to all parents with children who have anxiety. Honestly, it’s not just the most important thing my Mother taught me; it’s been one of my greatest lessons in life. And, for that, I will be eternally grateful to my Mama. Thank you, mom, for not giving in to my demands. You were right. That’s what all Moms want to hear, right?

With Fun and Love,

Jackie

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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.

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