The Phlebotomist and My Body: Who’s in Charge Here?

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I was anxiously waiting for my name to be called in yet another poorly-lit waiting room. Doctor’s offices were once just an occasional means to an end: I went feeling shitty and I’d leave with a script from the omniscient doc to feel better. Now, they’re as common as my trips to the grocery store, and they no longer inspire hope but instead hopelessness. Lyme disease has both blessed and cursed me with a deep connection to my body so I KNOW immediately when something feels bad, and these rooms— they feel fucking bad. I waited, growing more anxious, feeling like I was stuck in a cage, wanting to see the sunlight, jealous of all of my friends enjoying the beautiful day. Call my name, call my name. I got up three times to check the sign-in sheet. Twitch, Check my phone, shift positions, take a sip of water, look at the clock, check my phone, try to focus on something else, and repeat. And one hour later, one second before I developed Trichotillomania, my name was called. However, this is always a false sense of relief since all that happens in this time is that I get to stretch my legs while I’m ushered into the next room where I’m asked to wait just a liiitttttlllee while longer. This particular experience was at Quest Diagnostics, a lab for drawing blood, so I felt extra annoyed that what could take five minutes —IF PEOPLE WERE FUCKING INTELLIGENT— was becoming a full-blown interruption to my evening. The woman who was about to draw my blood directed her stink of apathy at the computer screen, never even looking at me. I hated her for it— she wouldn’t even acknowledge me if we were riding an elevator together yet she was about to wrap a giant rubber band around my bicep so that my veins screamed and then jab a sharp object into the one of her choosing. I sat staring at her. FUCK YOU: ACKNOWLEDGE ME. Acknowledge the person whose information you’re staring at: You know my full name, birthday, weight, height, marital status, physical ailments, and my fucking financial bracket based on insurance so LOOK UP AND SAY HI. I was super moody. When she finally turned around, it was to grab my arm, get a vein, and stick me (I get stuck with needles at least three times a month so it’s not like I’m a stranger to the sensation or super uneasy about it anymore). This one hurt, and the fact that I had been holding my breath in anger for almost 2 hours wasn’t helping. It hurt so much more than I had expected, and it didn’t stop hurting. It throbbed. I squealed which provoked her to unsuccessfully attempt pulling the rubber band off which only made the needle shift in my vein so it was jabbing me harder. “Stop pulling the rubber band,” I pleaded. “Oh my, I’ve never had this happen before, I’m sorry,” she kept saying. I didn’t believe her. She pulled the needle out and the crease in my elbow pulsed with no relief until I passed out.

When I finally came back to full(ish) strength, shivering because I had sweat so much, I started to cry. I felt so violated…again. I was flooded with memories of doctors, hands, and needles meddling with my body. I thought of all of the healthcare providers who treated me like a mere inconvenience. I was overwhelmed. After another few minutes of getting back into the present where there is infinite safety I realized, for the umpteenth time, that my body is so smart, and it was teaching me yet another lesson. I hadn’t been on point with my self-care the previous couple of days, and it was like my body needed a reset. I needed a reminder that self-care comes first — I had been pushing myself both physically and emotionally: I didn’t eat enough that day, I had rushed to the doctor’s office, I had packed my schedule too tightly resulting in anxiety, and I wasn’t giving myself space to process Ian being gone, my Mother being here, and IVIG dose number four starting the very next day. I was being hard on myself about finances and beating myself up for all sorts of things. I had gotten out of my habit of ninja-level self-care, unfairly leaving the weight of my needs on my phlebotomist which resulted in a loss of consciousness. Interesting.

It was a much easier time when I trusted “the doctor.” I was taught to always trust medical professionals. “The doctor” always knew better: “what did the doctor say? did you go to the doctor? The doctor said you need to take this. The doctor said you were fine. The doctor said it’s just anxiety. The blood work came back fine so let it go..” I LOVED the virginal world of trusting people with any sort of medical degree. In 2013, I walked in to see my first lyme literate ND who happens to also be famous for her experience and research in the world of Lyme. I immediately undressed so she could see all of my rashes and, after 30 minutes of face-and ass-time, I left with prescriptions for three different antibiotics. She didn’t order any blood tests or get much of a history on me — she was busy and it was fine. I’m impatient anyway; I’ve always been on board for a quick-fix. Hence, I’ve always loved antibiotics. When the first round didn’t work, I gave over my credit card number freely for 15 minute conversations with this ND, and I took her advice for 10 solid months. I took something like 450 oral antibiotics over that time, prescribed by her. In all fairness, she continued to ask me if my body could handle them and I continued to say, “yes, if YOU think it will get me well then I can handle it.” I took crazy expensive herbs prescribed by her and my acupuncturist, never really researching anything. I didn’t want the responsibility of caring for myself, truth be told. Who does? I need so much —can’t “you” just do it? I was like, “charge my credit card, charge it however much you need, as long as you say what I’m buying will work.”  Then, one day, my body fought back and started screaming at me. I had not had that experience yet — the experience of being in -tune with my SELF. Up until then, ten months into illness, I simply dosed myself as much as possible, blindly letting my doctor do what was actually my job: decide what was right for my body. So when I started experiencing a profound weakness every time I went to grab a bottle of antibiotics, I was confused. I would gag at the thought of swallowing another pill, I could actually feel my muscles weaken when I went to open a bottle. I couldn’t deny that my body was telling me something. It was shouting at me to STOP.

In retrospect, that’s when my recovery truly began: November of 2014. I needed a new treatment plan. It was between getting a PICC line and going the all- natural route(something I had NEVER in my life wanted to touch. I was madly pro quick-fix, and nothing about chewing on celery seemed quick to me). I had two friends in my life, both of whom had recovered from Lyme, one with a PICC line and the other all-naturally. But they gave me the same advice, “listen to your body, only you know what is best for your body. No one can tell you what to do, everyone is different.” This is true especially with elusive illnesses like Lyme disease where there truly is NO ONE WAY to getting better. Each body is different, and listening to my own intuition was the best advice I could have received .It was so clear. I knew, for some reason, that the only hope for my recovery was a natural route— healing from the inside-out. I began seeing certain medical professionals that treated me with kindness and care, and I started treating myself,  researching and listening first and foremost to my body through all different kinds of herbs and treatments. I was improving, but I wasn’t getting nearly as well as I wanted to be. Again, I listened to my body and to what was being shown to me by “the Universe,” if you will, and all signs pointed to Ozone therapy with a Doctor, who treated many Lyme patients  with success (now including me!), in Bali, Indonesia. It was in Bali that I first noticed just how much my relationship to my body had changed.

Lying on a long, flat medical table in a dark room finished with medical equipment that reminded me of a mad-scientists basement, I was waiting anxiously to get stuck with my next needle for round two of Ozone. The previous needle had brought me close to fainting, but after my best friend spooned sweet tea into my mouth, I recovered just fine. My doctor, a warm, light-hearted Balinese man in flip-flops, was leaning over me, his shirt falling on my face, gripping my forearm in search of a juicy vein. Squeeze- nothing there. Squeeze harder ..HARDER… a little something but not enough. Then he shifted to my left arm while his nursing assistant kept hold of my right.Get off of me, get off of me. Tears formed, I grew hot, and my body was shaking. I wanted to be treated with delicacy. That was the first time I realized I was traumatized from all of the doctors who grabbed me, touched me, poked me, dismissed me, misdiagnosed me, and mistreated me. My body, the same body I had abandoned and dismissed, the same body I had betrayed (especially when I went to visit the doctor) the 27 years prior, was now like my own child: I had lost my naivety, and I knew that if I didn’t protect my body then NO ONE would. Treating myself with such delicacy and love has been a major factor in recovery. Ever since I started being my own greatest ally, it’s been an uphill journey—albeit slow as fuck because apparently I needed a lesson in patience, but uphill nonetheless.

My doctor in Bali wasn’t doing anything wrong (he needs to find a vein) and my ND, though over-saturated with patients and a bit careless, was doing what I asked of her: more antibiotics! My phlebotomist, that bitch from last week, wasn’t NECESSARILY doing anything wrong either. My doctors aren’t supposed to act like the parents I never had (which I seem to just expect from EVERYONE). In this confusing world of illness, where I am so powerless over so much, including certain provider’s bedside manners, AND competency, I can focus on the one thing i do have power over: self-care. Am I showing myself the kindness and love that I wish the medical world would show me? Am I eating enough, drinking enough, and resting enough? Am I welcoming joy and wellness into my life? Am I keeping my schedule manageable? Am I turning to my friends for help with doctors appointments and blood-draws and IVIG treatments? If I think I’m not getting the right treatment, it is my job to first listen to what my body needs, second to do the research and see how I can get my needs met, then walk into a doctor’s office and advocate hard for myself. A doctor, like everyone else, is ICING ON THE CAKE. First, I need to bake the cake. I AM IN CHARGE HERE.

With Fun, love, and power,

Jackie

PS: for support on your journey with illness, we are here

 

 

Health Tip Tuesday: IVIG Tips

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My particular IVIG dose goes on for 5 days in a row/ 5 hours a day so these suggestions may not be appropriate if that’s not your treatment plan. This list came about after 4 treatments, a few mistakes, and the experience of a couple very smooth treatments:

1. Stay Hydrated – I drink at least 2 liters of water with lemon and 16 oz of coconut water a day. It prevents severe migraines and extra pain/ nausea. I always make sure to have enough coconut water around so I get electrolytes. If you prefer Gatorade, have at it.

2. Stay ahead of the pain– I take ibuprofen 400 mg before treatment and before bed.It seems to be enough to stay ahead of the headaches and body aches (Tylenol doesn’t work for me).  My first 2 rounds of IVIG were more brutal and I had to take extra ibuprofen. It DOES get easier. I’m finished round 4 with minimal headaches

3. Take your prescribed pre meds– I’m prescribed Benadryl pre- drip and I’ve not stopped taking it.

4.Have meals prepared-Hopefully, you have someone taking care of you for the five days of treatment. I try to fill my fridge and cabinets with healthy food the day before and let my care-taker know what I *should* eat. By the time, IVIG starts I want to eat garbage food so it’s important for me to keep up with healthy meals. I’ve experienced both a robust appetite AND no appetite during treatment so I let my caretaker know that I’d like them to force food on me if need be. My body needs the fuel. If you have nausea, try Zofran.

5.Stretch/ walk– Lying on the couch or in bed all day isn’t ideal, but it tends to happen when we’re so tired. My dear friend gave me a stretching routine for before and after treatment. It’s very mellow, but it’s enough to give my body a break from the soft bed. Also, just lying on the floor for a while can do good if you’re too tired to walk/ stretch.

6.Stay calm/breathe– AS ALWAYS, breathe. This is not a time to stress and worry about all of the “to do lists” rolling around in your head. Your body is working really hard. This is a time to rest and welcome healing.

7.Have things to do – 5 hours a day/ 5 days in a row.. inside and immobile can really get to anyone. It gets to me. Try to have plenty to do. I personally like to learn new vocabulary, watch TV, read (if I can), photo shop some photos, etc..

8.Ask for visitors– ASK FOR HELP! It can get lonely, depressing and boring being inside all of that time. Ask your friends/family/feel good people to come hang and don’t hesitate to ask for something from the store if you need it.

9.Massage – If you’re lucky enough to have someone who will massage you for free, then get on it! If not and you can afford someone coming to your house once or twice then get on that! Massage has never felt so good to me.

10.Ice packs/blankets– I seem to be very sensitive to the temperature. Ice packs really help me stay cool and comfortable and relieve my pain. I often fall asleep with them. And blankets obviously do the opposite. I always have both near by. Staying comfortable in mind, body, and spirit is key.

OH, one important extra tip: If you’re having severe side effects, ask your provider to slow the drip down so it goes over a 6 hour period. This can do wonders!!

If you need continued wellness support – we are here.

Fun and love and lots of healing!

Jackie

Stand Together Yet Not Too Near Together: On Romance

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“…But let there be spaces in your togetherness, And let the winds of the heavens dance between you. Love one another, but make not a bond of love: Let it rather be a moving sea between the shores of your souls. Fill each other’s cup but drink not from one cup. Give one another of your bread but eat not from the same loaf Sing and dance together and be joyous, but let each one of you be alone, Even as the strings of a lute are alone though they quiver with the same music. Give your hearts, but not into each other’s keeping. For only the hand of Life can contain your hearts. And stand together yet not too near together: For the pillars of the temple stand apart, And the oak tree and the cypress grow not in each other’s shadow.”

Khalil Gibran, The Prophet:  On Marriage

Ian, my partner and main care-taker who I started dating just a few months after getting sick, just left on a six-month long trip. GASP. I start round 4 of IVIG today and he’s not here. DOUBLE GASP. Shocking, I know. To ease the blow, I’d like to address the question I continue to meet: “Oh my god, Ian’s leaving for six months… WHILE YOUR SICK. ouch. You’re OK with that?” In short: “abso fucking lutely” (to quote Big from Sex and the City). I have the relationship that I’ve been dreaming up since my days as a school girl, if you can believe it. Yes, he’s “leaving me” to go on his trip while I’m sick. HA. That’s one way to put it. Here’s how I see it: Ian is living his life, he’s leaving for six months because he has an epic dream to fulfill and Lyme Disease doesn’t steal dreams – neither do I. You know what else I keep from infiltrating my life and controlling me/ my dreams/ my relationship? Fear. I choose to see this time apart as a blessed time that I get to have my own evolution, focusing solely on my recovery in mind, body, and spirit. I imagine that when he and I meet again in a few short months, we will be all the more equipped to love one another wholly and truly. I wasn’t always this way. I just reread that sentence and was like, “who wrote that? Not me.” I got to this particular relationship after a grueling trek, escaping the many booby traps set for me, and learning my lesson the super fucking hard way.

My undeniably defective childhood really worked in my favor — it was like receiving the “Everything you Should Never Do: Rules for Life” handbook. I’m forever grateful to own that book. I flip through the metaphorical pages for reference every single day. Like all of us, as a child, I was a victim of circumstance. I was in an abuse cycle with no freedom or insight to choose otherwise. I look back on my childhood only with a deep sense of relief that it’s OVER; that I can wake up in my own bed and choose who comes in my front door. When I tasted some personal freedom at the age of 13, I was quickly addicted to the power of choice. I do not want to be held down by anyone or anything. I run away when I feel controlled. I watched my Mother suffer, making faulty choices, under my Father’s tyranny. We all suffered, and I vowed to never be a pawn in a dictatorship dynamic again. I would never marry someone I didn’t love (like my mom did). I would never marry someone like my dad. I would never raise a child in a home like that.

The only sure-fire way I knew to get around my nurtured instinct (which was to date alcoholic assholes) was to date “safe” people. I moved all the way to Hawaii with my low-risk-assessment investment. I moved to Maui (arguably one of the most romantic places on Earth) to participate in a passionless romance. We bickered like an old couple in a scenery that demanded loving with abandon. He was wonderful, sweet, soft, safe, and everything my Father wasn’t so I spent nearly four years convincing myself to stay, and I grew to love him very much in that time — like he was my big brother. He was my excuse, in fact, for why I was unaffected by my childhood …see, I’m dating a totally normal, nice man, I don’t need therapy. I could have settled and stayed, but it would have been out of fear. I knew I wasn’t happy, and I was the great protester against the restrictions that fear conceived. I wanted my freedom, and I took it. I left for Los Angeles, ready to grab the big-life I craved by the balls and have my fucking way with it. I left vowing to NEVER end up in a passionless romance again — safe or not — it wasn’t worth it. The next person I was with, I decided, I would crave and love and feel an intense physical desire for.

I got what I wanted. I met a charismatic man who met the criteria: I craved him, all right. I was addicted to him, obsessed with him, unable to exist without his validation. The ups and downs were more extreme than my previous experience with hard drugs. At last, my childhood trauma caught up with me, and I had met my Father in age-appropriate, rock-star form. Our turbulent relationship held the potential to completely destroy my life. I almost did everything I vowed never to do: marry someone I didn’t truly love, marry my Father, BE my Mother, and raise a child in an almost identical setting to my own loathed childhood. I suffered so badly in the cycle of abuse and insanity that I still wake up almost everyday grateful that it’s over. It’s over because I fled. I got the fuck up out of there, this time deciding that if my only options were “passionless,” “abusive,” or a horrifying combo of the two, then I would happily live out the rest of my life SINGLE.

Totally defeated, I sought help. What was wrong with me? I had a lot of work to do, and for some reason– that I can only describe as grace –I was prepared to change. I wouldn’t even go on a date, let alone flirt with a person of the opposite sex for about 4 months. I had spent at least ten years using sex and coquetry as a way to legitimize my existence and suddenly, swiftly, I was different. I began dating. This time, I didn’t throw myself into a mosh pit of men. I sat and observed, confident and patient, waiting to be asked to dance and then, if satisfied, perhaps we’d dance again. No rush. I had a sense, a deep intuition, of what I wanted. “I want a man who I want to do everything with; and a man I don’t need to do anything with,” I stated over and over again.

ENTER: IAN

Fun fact: Ian is actually only in my life BECAUSE of Lyme Disease. We share a mutual bestie who suggested we meet (platonically) since we had similar struggles with chronic pain/illness. If Lyme brought me him then it’s all been worth it.

I was undeniably attracted to him and intrigued by him but what really won me over was his uncanny ability to leave me the fuck alone. Here was a man who did not pester me, that wasn’t needy, jealous, or controlling. A man who knew how to ask me out, to take me out, to compliment me, respect me, show me kindness and love, and then disappear for a few days because HE HAD A LIFE, and I wasn’t prematurely at the center of it. We dated for three months before we committed to one another. I knew I was falling in love with him one sunny day in June, just a few weeks before we had “the commitment talk.” I knew I was ready to venture into a relationship with him, but I didn’t know how it would go. With help from my friends, I lived in the day and not in the future. I was present for each new development staying “properly invested” as my dear friend Laura would say.

How it has gone? Better than I could have EVER imagined. The love between us is fierce and grounded; stupidly romantic and entirely “realistic.” A friend once told me that “maturity is delayed gratification.” I have spent the last couple of years with Ian endlessly gratified because of the solid foundation we slowly built. Don’t get me wrong: He’s a super annoying MAN: he has a poor memory, he’s messy, and he has this ridiculous tendency to rob homes of all of their coffee mugs. My own cabinets have been depleted of mugs to which he responds, “drink coffee out of a bowl!” No. And, oh my god, all of those things bring a goofy hormonal smile to my face. He’s just my favorite human. So how have we had such a successful relationship in the midst of illness? Why hasn’t he left me after all of the crying I’ve done, and all of the fun I lack? How is it that just when I believed I was at my least lovable and least sexy, I found the true love of my life, and a man who makes me feel sexier than ever? And– WHY IN THE FUCK AM I OK WITH HIM LEAVING FOR SIX MONTHS?

Ian is no stranger to chronic pain and though he is one of the most active people I know, he, too, has been through various struggles of the body which has been a breeding ground for compassion. He also just so happens to be naturally good at putting himself first while simultaneously being a present, and caring partner. I remember the first time I cried in front of him. I broke down, saying things you pretty much never want to say, “Do you think I’m pretty..?” etc.. He held me for a while, comforting me, “You’re so beautiful and great and special and smart..” and he kissed me everywhere, and then he LEFT. Hahahahahaahah. He left me in tears. Thank God. Ian has taken such great care of me while never losing sight of his own personal goals and ambitions, and I have taken great care of myself while being a supportive girlfriend, and never losing sight of my own personal goals and ambitions. It’s hard for resentment to grow in a garden like that. I have a support network that extends way beyond Ian, and, more often than not, he is NOT my first phone call when I am in crisis. I, personally, have to be aware of my tendency to look for my adult partner to fill the role of “parent.” My first step is always to meet my own needs. Talk about freedom: a life where I meet my own needs/ parent myself.

So when this long-term trip came up, a trip that he has been attempting/planning for over 3 years ( before I came into the picture), I got on board to support him (sometimes ungracefully). I want to be a catalyst of my partner’s growth, not a hindrance. I remember once when I was itching to get Ian to TELL ME WHAT TO DO about a career path. I said, “You’re supposed to tell me to keep acting. You’re supposed to tell me that that’s what I’m best at and I shouldn’t stop. ” Blatant Subtext: I need validation. He looked at me, obviously unwilling to give in to my childish demand and said, “I will support whatever makes you happy. That’s what I’m supposed to do. I trust you.” A world where I get to do what’s best for me and not try to fit in the mold “he’s” prematurely created for me to make him happy? Genius. And I long to do the same for him. I trust him, and I believe he needs to do this trip. This doesn’t mean that I’m not afraid. I have fears by the dozens: What if he gets hurt, what if he meets someone else, what if he falls out of love, what if I fall out of love or meet someone else, what if he doesn’t want to come back, etc.. It’s just fear, “story-time” if you will. Control is an illusion anyway so I sit powerless, in the certainty of uncertainty — enjoying the journey, watching it unfold — taking care of myself and wishing him the best trip.

I recently had a life-changing energy healing session, and this particular Reiki master said, “if I had a prescription pad and needed to prescribe a treatment for Lyme Disease, I would simply write ‘love yourself’.” Love starts with self. “Give your hearts but not into each other’s keeping,” as Khalil Gibran writes.

Fun and Love,

Jackie

PS: If you’re having struggles with your relationship, I suggest you reach out  Here

Health Tip Tuesday: Omega Supplements

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If you’re like me and terrified of any extra Mercury finding its way into your system then you are probably looking for special ways to introduce omega fatty acids into your diet without also consuming fish.

Omega 3 and 6 are necessary, AND it’s not necessary to consume any kind of fish in order to get them. I consume a ton of hemp seeds, chia seeds, and walnuts. These mostly account for your Omega 6 intake and it seems to be overwhelmingly true that you NEED both.

I just found the brand, OmegaZEN which has a vegan omega 3 formula and it’s working beautifully for me. I urge you to look into what would be right for you especially if you are detoxifying from heavy metals but need to find a way to supplement. Anyone who has other helpful tips/suggestions on this topic, please leave a comment!

Fun and love,

Jackie

East Coasting: A Photo Essay

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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

Healthy Enough to Feel Like a Lunatic

THE PART OF GETTING WELL YOU CAN’T BE PREPARED FOR:

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I am red and dizzy, hot and overtired sitting at LAX waiting to board a flight to NYC. It’s my first time solo in an airport without wheelchair assistance in almost 2 years. It’s a flight that I’ve diligently avoided for over 2 years- unable to imagine being in New York, my home town that holds too many emotional memories; the city that never sleeps. Why would I EVER travel to the city that never sleeps when all I could do (whether I wanted to or not) was rest. I’m terrified to go to New York City. I’m terrified of the emotional and physical stress. Seeing my family has gotten harder and harder for me over the years as the less than pleasant experiences pile on, and I’m saying goodbye to my boyfriend of 2+ years (AKA my main care-taker) so he can go off on a six month-long journey of his own, and I’m doing it all on a crazy budget of zero dollars because I’m broke. Once upon a time, ESPECIALLY while living in NYC, I was capable of housing a tremendous amount of emotional and physical stress. When I got sick, well, I got TOO SICK and had no space for emotional stress. Hence, I didn’t go to NY, I didn’t allow anything “anxiety based” to infiltrate. My sole focus was, and had to be about, self-care – taking baths, eating food, and drinking water. Life  “simplified” under the  most complicated circumstances. I was just like “gimme my blanky, rub my back, I just gotta keep living.”  Now, I have this little bit extra, this bit of energy totally available for usage, and the emotional stress (of things that have little do with illness) start making up for lost time. It’s like I haven’t seen or talked to my best friend in two years so we have LOTS of catching up to do: finances, romance, family, career, friends, and exercise – there’s so much to talk (think) about! Isn’t it lucky that I’m well enough to think about things other than “where’s my fucking blanky. I need use it to block the sunlight! OK now- put Aladdin on so I can calm down!”  Well, yeah, it’s lucky and great AND somehow so much harder than I thought it would be. First of all, I’m  getting better- I’m not just SUDDENLY  better and back in my old life, flying trapeze with no trauma from the last 2+ years of needles and pills and reckless doctors. It is so much harder than I thought it would be. There’s going to be stress because I’m not enlightened enough to be stress free, but HOW do I balance as I step back into this world as a functional-enough-to-visit-home individual? How do I balance as an individual that’s just functional-enough to consider writing on all of these topics for my piece this week:

 Thursday: It seems like anxiety is coming up a lot with one of our wellness-companion clients, I should talk about my own struggles with anxiety. I’ll start off with my first panic attack when I was ten, then talk about my panic attacks in my early twenties and then about how it all changed with illness.

Then I remembered that this trip to NYC was looming. I’ll write about my relationship with NYC and how much it has changed over the years. I’ll talk about my deepest, darkest secret: that I was not only born on Staten Island, but I was raised there, too. I’ll talk about how terrifying it is to see my family and why. I’ll talk about having a new experience there because illness has changed me.

Friday: I had to go to the Department of Social Services for Food Stamps I should talk about all of my experience with needing government assistance. God, I feel like a piece of bacon in this joint- everyone is looking at me because I don’t fit in: I’m young, white, pretty, my shoes are in one piece, and I’m  not strung out. I don’t even smoke. I’ll write about how this was never supposed to be my life, my father promised me the world: my own apartment in Manhattan, any college I wanted, and support in whatever career I chose. Then he started smoking crack and the next thing I knew we were on state insurance and I had no access to doctors. Yeah, that’s what I should talk about.

And, I started writing that, but then I remembered that Ian, my partner, is leaving on a six month long journey this week.  Maybe it would be cathartic to talk about saying good-bye to Ian and all of the fear I have about him leaving. I can disclose how much I love him, and how much he’s cared for me, and how deep my abandonment issues run (well, the world knew about my abandonment issues like forever ago.) Yeah, I’ll talk about Ian and romance while chronically ill.

Then I found myself laid out in bed one afternoon very sick. I’ve been functionally sick this week, not like last year – when the stairs looked like Mt. Everest. I’ve been exhausted and in pain.  It’s not surprising that I feel like garbage: my boyfriend is leaving, I’m traveling to a place I do not want to be, I have SUCH LIMITED funds that I spent hours in a cesspool of germs just to beg or food stamps, not to mention that I AM NOT “ALL BETTER,” I’m just healthy enough to fly alone, walk, hang out with people, talk, laugh, sit in a government-run agency for 3 hours, pack,  hold space for saying “BYE I LOVE YOU,” to my boyfriend, AND actually feel all of it.  I can’t just hide from, or bandage up my truth with gratitude lists, meditations and, I don’t know, cucumbers. I’m an unenlightened and totally emotional human. So what in the fuckity fuck do I do?

I found something really interesting recently. In the text-book of Alcoholics Anonymous, it says: “Assuming we are spiritually fit, we can do all sorts of things alcoholics are not supposed to do. People have said we must not go where liquor is served; we must not have it in our homes, we must shun friends who drink; we must avoid moving pictures which show drinking scenes; we must not go into bars; our friends must hide their bottles if we go to their houses; we mustn’t think or be reminded about alcohol at all. Our experience shows that this is not necessarily so. We meet these conditions everyday…. his only chance for survival would be someplace like the Greenland Ice Cap, and even there an Eskimo might turn up with a bottle of scotch and ruin everything!…In our belief any scheme of combating alcoholism which proposes to shield the sick man from temptation is doomed to failure. If the alcoholic tries to shield himself, he may succeed for a time, but he usually winds up with a bigger explosion than ever….So our rule is not to avoid a place where there is drinking, if we have a legitimate reason for being there…Therefore, ask yourself on each occasion, ‘have I any good social, business, or personal reason for going to this place? Or am I expecting to steal a little vicarious pleasure from the atmosphere of such places?’ If you answer these questions satisfactorily, you need have no apprehension. …But be sure you are on spiritual ground before you start and that your motive in going is thoroughly good.”

For me, I can change the words from alcoholism to “chronic illness” and liquor to “emotional stress.”  Stress cannot be avoided unless I go live with the Dalai Lama and, even then, a yak might go wild and try to chase me in which case, my body will LIKELY respond with stress because I don’t like being chased. So how do I keep balanced so that when I face the scary stuff, my body doesn’t completely FALL APART? It’s an ongoing struggle. The main thing for me is to feel the feelings in my body without attaching a story to them. Or to stay in the facts. Like “I’m sad Ian is leaving,” instead of “what if Ian leaves me, meets someone else, gets hurt, gets in trouble, or decides he doesn’t want to come back to LA for some reason.” That’s what I like to call “story time,” and as many of you know, story time can be dangerously entertaining and enticing. Noticing the thoughts in my head that are 100% fear-driven and not based in reality is step one. Pausing, taking a deep breath, getting present, and stating what IS true is step two. That’s an honest place I can make progress from. Knowing that I’m sad Ian is leaving, I’m nervous about my trip, and am concerned about finances, and have a treatment coming up, what can I do to stay balanced? Here’s some of what I did and some of my game plan:

I called/ texted a few of my closest friends something like :”I’m really scared…here are all of the things that are happening, and I might need a little extra support over the next few weeks.” This simple practice gives me the feeling of support- people know what’s going on in my life and they have my back.

I called Eva before I got on this flight because I needed to talk about the specific illness/stress combo and how to combat it.

I made sure to pack some of the healthy food I need in case I can’t get to the “right kind of store” right away. Jesus, being unwell is SUCH A PAIN IN THE ASS.

I humbly got food stamps before I left so I could buy the healthy food I need. I took some yummy snacks to the office and a book that made me happy. I know how to prepare myself for the scary things that feel bad today.

I made sure to buy enough water for the plane ride.

I called my grandmother, told her I’d be coming, and that I might not have much energy. I told my Mother and Uncle the same thing. I do not plan on over exerting myself.

I take it ONE MOMENT at a time. Just do the next right thing- the advice my dad gave me a decade ago that never fails.

I chose not to see my Dad because I don’t spend time with people who ONLY bring me stress and heartache. That’s like an alcoholic going to a bar with no one and for no good reason. So, the only people I will see on this trip are the feel-good people.

I will take time each day for myself- resting, reading, writing, listening to guided mediation, going on light walks, and things of that nature.

I will lower my insane expectations of myself and allow myself to show up as best as I can, and no better than that. That means that I don’t try clean my Grandmother’s roof or like save my brother from his lifelong pain but instead focus on breathing and watching a funny movie with both of them.

I will allow others to care for me, and I will be kind to myself. I made sure to pack comfortable clothing- because seriously- now is not the time to worry about looking good.

The list goes on, really. There are endless ways for me to take care of myself and none of them will necessarily “cure” the pain, the stress, and the anxiety. It WILL be sad to say goodbye to Ian and it WILL be hard to spend time with my family AND my financial reality remains a stressful one. (Sidenote: I just spilled an entire cup of gingerale on myself in hour one of this plane ride. So my ass is now soaked and sticky. That’s not fun and also maybe I’m less functional than I thought). That’s OK. I don’t have to resist it or attach myself to the other story I have which is that “stress WILL TAKE ME OUT.” That story is scarier than the stress itself: the story that emotional pain will physically hold me down and likely never let me up again, therefore making me all the more nervous when my anxiety begins: ARE WE the smartest mammal? Illness has made me afraid of emotions in a way because, for a long time, I truly did not have the capacity to deal with anything other than just stay alive. Now, I’m here, on this plane with soaking wet pants lucky that I have space for more and learning how to balance it. In the end, yeah, I feel lucky to be alive and I feel lucky that I GET to feel it all.

With fun, love, and sticky pants,

Jackie