On Mucus, Urine, and Peace

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Mucus:

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

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

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

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

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

Me: “excuse me?”

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

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

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

What a dick.

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

Oh, Medi-cal.

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

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

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

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

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

Urine:

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

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

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

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

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

Happiness

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

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

QUIET. TEARS. SWEAT.

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

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

Other things I wrote/ am offering this week:

On patience

On romance

with fun and love and peece,

Jackie

 

 

 

 

 

 

 

Pulling for Latoya

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This was my infusion week. My drip line was removed yesterday, and I am restlessly recovering now. During infusion weeks, I have a hard time deciding what to write/when to write/how to write. It seems like all of my energy— creative and otherwise— is sucked from me and stuffed in a bag for safe-keeping until I’m ready to play again. How do I rally? Day one of my infusion, I watched that Tony Robbin’s documentary everyone is raving about, “I Am Not Your Guru.” It’s a good watch — “I mean nothing mind-blowing, nothing I don’t already know,” says my self-righteous ego.HAHAHA. Except that I did learn something new and my mind was blown over this one thing: Push motivation vs, Pull motivation. Push motivation is exhausting, he says, you’re pushing yourself, using willpower and discipline to accomplish your goals. The push will never last long-term because you get burnt-out. PULL motivation, on the other hand, requires no “rallying,” no forced effort; you are being pulled—you want to do it, you don’t have to do it. This is crucial advice for those of us who are sick—so sick that there’s no room for push. So sick that push can actually delay healing and drain our adrenal glands. PULL, however, feels fulfilling, joyful and bring us toward healing. So, I thought, what am I pulled to write about this week while my IVIG infusion drips? There’s something I haven’t been able to stop thinking about for a couple of months now—something I feel utterly PULLED towards, therefore, something easier to write about with an IV in my arm, aching pain circulating through each cell of my body, and a deep exhaustion that makes me wonder if I’ll ever stand up again. I am pulled to an upright position. I am pulled to an upright position for Latoya and all of those just like her.

In early June, I sat in static LA traffic, the sun blasting through my windows— attempting to blind me or burn me, adding pressure to an already tense situation. I sat, nail- biting,  1.5 miles from my home (a ride that should take 3 minutes), watching the red light change to green, to yellow, to red again. . .on repeat. I switched on KPCC, our local NPR, and happened to catch A Martinez interviewing John Hwang, creator of “Skidrow Stories,” an online photography series documenting the lives of the homeless that live on skid row in Downtown LA. My mind was ripped from self-obsession, traffic obsession, obsession around my illness, and directed toward the immense calamity happening just 7 miles SouthEast of where I luxuriously sat. I was PULLED, pulled to know more, pulled to help, pulled especially in the direction of one woman he met on skid row. I wrote to John after I heard the interview asking if I could write about him, his mission, and his friend, Latoya—he graciously agreed and thanked me for my interest. I also asked if I could accompany him one time which he kindly agreed to as well. I love the work John Hwang does—the work he was pulled to do.

Standing on a bridge in downtown LA, killing time in order to wait-out the traffic (yes,traffic, the way I was introduced to him. . .maybe there are benefits to traffic), John randomly chatted with another pedestrian on the bridge—nothing out of the ordinary, just some face-to-face human connection—something that, I suppose, IS becoming extraordinary. John remembers, “So we’re just having this conversation and then he tells me he was on the bridge because right before he saw me he was going to jump off and kill himself…He said that somehow our conversation made him feel better and gave him hope in life…” That moment inspired John to spend time on Skid Row—just…talking to people. In an effort to share these stories—of tragedy AND triumph— with his friends, he pulled out his camera and asked if he could take  someone’s picture. Hwang has no interest in exploitation, he has never had a gallery or exhibit—he even turned down CNN’s interest in making a documentary series. But the pictures are what put John Hwang, “Skid Row stories,” and it’s inhabitants in the spotlight. It’s what helped us to see the people, and hear their voices…#LIVESMATTER. Skidrow Stories is a way to support and encourage the thousands who live forgotten and ignored. John Hwang is actively changing the lives of people on Skid Row by listening to them. By listening to people like Latoya…

Latoya is a woman who would likely intimidate me on the streets: angry and quietly volatile— that’s how I imagine her. Like most people who present themselves with anger, drug addiction or mental illness, there is a story, a background. A story that needs to be heard and loved, not overlooked. Latoya has been hardened from unfathomable trauma, a life so unfair it seems like fiction. John noticed that every time a dog would pass her by, she’d soften, and her tender heart— her innocence—would break through like a bit of light at the end of a long storm. Hwang questioned her one day on why she had such a different reaction to dogs. She said, “dogs would never hurt you like people do…”

Latoya was repeatedly raped by her stepfather until she was 11 years old when she decided to run away. Her family chose not to look for her so they could continue collecting welfare checks on her behalf. She met a pimp on the streets as a pre-adolescent.  When Latoya was 11, she was in the throes of human-trafficking and working as a child prostitute. When she contracted HIV in her late teens, she was left— dropped and abandoned…again. That is when she started using hard drugs on the streets. Latoya prefers to stay on drugs in an effort to numb her sense of worthlessness and loneliness. How many people only see “homeless drug-addict,” when they look at her? I wonder. Her story is, unfortunately, not even close to “unheard of.” Her story is one of tens of thousands.

When I was young and naive enough to think that the world could operate in “fair terms,” I thought a lot about the homeless community. I remember driving by a vacant, off-white house, the paint was peeling, the windows were boarded up, and the front door seemed to be made of steel. It was a big-enough house—big enough to make me wonder why it was taking up all of that hardened space, dead energy, offering nothing back to the world. People were living on the streets, and so I wondered like I thought anyone would, “why don’t we fix that house up for the homeless.” I would see this could-be-shelter from the back seat of our suburban SUV and have grand fantasies of cleaning up the place, and painting it some bright color, inviting all of the homeless people nearby to live inside. I imagined myself cooking for them (I owned one of those cookbooks for kids so I could get by). I imagined smiling and laughter: a community of strangers feeling loved, seen, and heard. I felt pulled to make that happen and didn’t know where to begin (because I was like eight). As time passed and my innocence passed with it—I came to realize the vastness of the homeless community, the intricacies of our government, and then I was really stumped. I turned a blind eye.

I live in Los Angeles, a city where homelessness is multiplying daily right alongside the billionaires. I drive past people all day, every day. Women and men walk the double yellow line with signs like, “please have compassion. anything would help.” They stare at me, and I usually have nothing to give—sometimes a Lara bar or two, but more often than not, I just look away. In fact, I usually lock my door because I’ve been taught (through experience) that as a small woman, I am unsafe. But this epidemic cannot be denied. All people deserve to be seen and heard. I feel pulled to do something. I want to know Latoya. I want to know all of the pre-adolescent girls, gearing up to run away from home because they are being raped by their guardian, and I want to take them to my magical bright  house where we smile and make food all day. I felt inspired to get immediately over to Skid Row and talk to people, too. Maybe even find her, hug her, love her. And I feel completely unsafe doing that on my own, but I can’t ignore the PULL I feel, the aliveness that pull generates.

Yesterday, I got shit news. I received scary blood test results that sent my central nervous system into an anxiety-ridden shock and eventual collapse. Just as I was pulling myself together from that news, I got the news that I was denied federal disability because my condition isn’t “severe enough,” and I can “adjust to different work even though I am  hindered.” And then I cried. I cried because I feel abandoned by the system, by my doctors, by the minimal friends and family who haven’t shown up, and by my body. When I think about my childhood, I don’t just have abandonment issues because of my parents. I think about all of the onlookers—the neighbors who didn’t call the cops, the family members that didn’t rescue me, the teachers that never checked in when I was clearly losing my shit, the cops that didn’t show up, and the justice system for letting down my mother and therefore me. It’s those people that I WISH would have said something. . . at least acknowledged what was happening and asked if they could help. I felt all of that sadness again yesterday, the heartbreak. And with my own devastation, I felt an even stronger pull to tell Latoya’s story—because none of us should be denied our truth.

With love,

Jackie

PS: find skid row stories on Facebook

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

The Story I Never Tell: There’s No Silver Lining

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My body was breaking out in mysterious rashes.
I’d discreetly lift a pant leg to reveal the repellant red rash and ask people what they thought.
They’d say, “ Huh, that’s weird, but I promise you it’s no big deal.”
Or, “Don’t worry so much.”
Or, “Be positive. Have positive thoughts.”
I was positive when they first broke that they were no big deal, and I was positive as time went on that they would heal.
Weeks passed. I was panicking.
The rashes got worse.

I saw an herbalist.
He examined me and gave me some herbs saying, “don’t worry. It will clear up in a couple of days. These always work.”
I left his office positive that I was holding the solution in my hands.
I was relieved.
I took the pills. I took his advice, putting tea tree oil on the irritated areas.
The rashes continued to infiltrate my body without my consent.
I was concerned. People said, “I’m sure you’re fine. Stay Calm.”

I saw a doctor at Urgent Care and he suggested it was Lyme disease.
PHEW. I felt naively positive about the diagnosis.
At least it’s not bed bugs or psoriasis, I thought.
Because NOTHING is worse than bed bugs, right?
Wrong.

I was told to find a lyme literate doctor in the LA area.
Easy, not a problem, right?
Wrong.
I was turned down by four or five different offices.
“We aren’t accepting new patients.”
“We have an opening two months from now.”
“We are 1,000 dollars for your first visit.”
I cried.
Why was finding a doctor such an obstacle?
Why didn’t anyone want to help me?

I found a reasonably priced doctor in San Diego that was willing to fit me in.
PHEW, I was positive THAT was the beginning of the end.

I drove to San Diego, and the doctor prescribed three different antibiotics for a duration of two months.
I left her office absolutely certain that an attack plan like that was more than enough.
It was good I caught it so early, she said.
It was good I was being pro active about my health, I thought.
I would be one of the lucky ones– I’d escape the terror presented with Lyme, I told you.
I put about $2,000.00 on a Credit Card that day for the doctor’s visit, the medicine, and herb tinctures to support my body. I thought I’d pay it off quickly.
I took 456 oral antibiotics in two months.
I was tired.
I reminded myself that it was temporary; that I would get well soon.

Two months passed.
I took my last pill and posted on social media, celebrating, “the end! Back to the mountains”
I went on a hike.

Two days later, I got sick with merciless flu-like symptoms.
I was scared; I could tell something was wrong.
I convinced myself that my body was adjusting to being antibiotic free.
Two weeks went by and the flu-like symptoms lulled into my new normal.
I stayed positive, and I stayed busy waiting to hear the results of my blood tests.
I was positive they would be negative. They HAD to be negative.
I told you they would be negative.

The results came back positive for active Lyme infection.
I fell onto a bench in Union Square, NYC.
I sobbed.
It made no sense.
I felt so alone.

My doctor said I needed to do another few months of antibiotics including an intramuscular injection called Bicilin.
“Do you think you can you stomach more antibiotics?” she  asked
“I can stomach anything that will get me well. Promise me it will get me well.”
“This is the best course of action, especially with the Bicilin,” she said.
At least I had an action plan. OK so another few months.
I COULD and WOULD handle it.

Insurance refused to cover the Bicilin.
I started fighting with insurance.
Day after day I listened to hold music,I got transferred to person after person who could not/ would not help me.
I was being denied such a basic right.
If the doctor says it will help cure me of this hell, why would insurance deny paying for it?
Months went by, fights ensued, and we finally gave in to paying out-of-pocket.
My mother generously paid 1,000 dollars to get me a month of shots at $100 a shot.
People said, “You have this shot now. Be positive. It WILL do the trick.”
I was certain that the shot would cure me; the doctor told me it would.
I was grateful that my mother could pay for it.
I stayed grateful.
I got so much sicker.

I tried to apply for disability.
I got turned down.
I kept working instead.

Four months of antibiotics went by. I can’t count the number of pills I swallowed.
A daily dose of red pills, blue pills, white pills, pink pills, and one
long, painful shot in the ass that left me limping for a day or two.
I slowly suffered.
I consumed countless disgusting herbal tinctures and hundreds of supplements that I didn’t know existed – just to combat the fucking armed rainbow terrorizing my gut.
I was counter- attacking Lyme from all angles.

I started writing a script.
I kept working.
I stayed positive.

I swallowed my last Clarithomycin feeling very sure that it was over.
I posted a photo of myself laying in the sun, “antibiotic free!”
I kept wanting YOU to think that I was “getting better.”
Because I kept needing to think I was getting better.
A week went by, I was doing well!

Suddenly: Crippling pain.
Suddenly: Insomnia.
Suddenly:Muscle spasms, sore soles, ear pain, confusion, and heart palpitations.
Suddenly: darkness.

I went away from social media. I had nothing positive to say.

I dropped out of acting class; I couldn’t do it
I dropped my short film; I couldn’t do it.
I stopped eating, and I stayed in bed.

I called the doctor AGAIN.
She put me on a new regiment of antibiotics — a set of colors I had yet to experience.
I took them for a month along with my newly prescribed sleeping pills that didn’t work.
My body was giving out.
Lack of sleep, all of those pills, and Lyme Disease were officially kicking my ass.

I couldn’t sit up.
Laying down hurt.
Social events were the loneliest events.
Showing up at work was the greatest acting challenge I had ever been presented with.

I called my Uncle from my serving job one morning.
It was 6 am LA time, and I was cleaning up a cafe preparing to serve people on no sleep and belly full of pills.
I wanted something… some sort of comfort that my father couldn’t offer me.
He said, “Oh honey, I’m sorry, but be positive, don’t forget to be positive.”

Be positive? It’s like watching someone laid out on the concrete getting their face bashed in and standing across the street from them, watching, and shouting, “Don’t worry, man, THINK positively. The pain will pass. Hey- at least it’s temporary.”
Instead of crossing the street, getting down to their level, holding them, and saying, “I’m here. Where does it hurt? How can I help?”

My mind, body and spirit pain were expanding, wrapping me into a straight jacket.

I was a prisoner.

I couldn’t fight and my perp was a tough mother fucker.

I took myself to the Hollywood Mental Health clinic at 8 am one Monday morning.
I stood in line with homeless people who blew their noses too loudly and stood too close to me.
I just needed to survive.
I wouldn’t tell anyone.
Not until I felt better. Not until I could stop crying.

I couldn’t do antibiotics anymore.
I decided that I would beat this naturally; antibiotics weren’t working.
I was 100% sure that was the right choice.

I had no money which presented a great obstacle if I wanted to heal naturally.
My credit cards were maxed out already from this medical hell.
I kept working: serving, acting, babysitting, and a few other random jobs I used to pay my rent, feed myself, and go to acupuncture.
At least I had a job, at least I could pay my rent. The money would come, I told myself.

I did a fundraiser, and you guys supported me BIG TIME.
The fundraiser allowed me to quit my waitressing job.
You sent me to Florida to get peptide shots.
I was SO excited/ hopeful about those peptides.
I posted about all of my gratitude and progress.

Weeks passed. Peptides helped but it was apparent they were not the solution.
I never said that out loud.
I couldn’t.
It was too painful.

Onward. I found a new, highly recommended Lyme doctor in Los Angeles. I felt so good about her.
She could over see all of my care here.
She cost $600.00 out of pocket for the first visit.
After much deliberation, I used some fundraiser money for it.
She WAS going to get me well.
I told you that she was.
I was being just as strong for you as I was for me.
So that you wouldn’t get scared and run away.

She ran a host of new blood tests.

I didn’t post when the blood tests came back with numbers that terrified me.
I couldn’t understand exactly what they meant.
She wouldn’t review them with me unless I paid 300.00 for the follow-up visit.
I emailed:
ME: “I can’t pay you but will you tell me what these immunoglobulin numbers mean?”
DR. : “Chronic disease.”
ME: “Lyme disease or something else.”
DR. :“Lyme, something else, or both.”

I felt let down by her.
I felt let down by my San Diego doctor who kept filling me with antibiotics.
I felt let down by my family.
I felt let down by my General Doctor again and again and again.
I felt let down by peptides.
Let down by the Cowden Protocol.
Let down by some friends.

Let down by my body and myself.
This was too dark; I got back into action.
What CAN I control? Where can I find positivity?

I went to Bali for two months of ozone therapy.
My best friend took the journey with me and paid my way where the fundraiser fell short.
My mom helped a lot, too.
I was so grateful.
stay grateful stay grateful stay grateful.
I put those blood test numbers out of my head.

I got stuck with 40 needles in two months.
I cried a lot. I was in horrible pain.
I didn’t sleep.
I showed up anyway. I went to yoga anyway. I meditated anyway. I wrote anyway.
I loved anyway.

I was very sick the day we left Indonesia.
So sick that we had to fight to get on the plane.
“She looks too sick,” Cathay Pacific employees said as they ran around trying to determine whether or not they wanted to let such a sickly human on the plane.
What the FUCK do I look like?” I wondered.
It had been a year and a half, but I still didn’t even really believe that I was sick.
I still don’t, sometimes.
Denial helps.

I got back to LA.
I attacked life immediately because I HAD TO BE better.
I promised you I would get better in Bali.
Within 24 hours, I was at an audition that nearly killed me.
Ozone therapy helped more than anything else had, but I pushed it.
I couldn’t do it; I was back in fetal position.

I got an easy front desk job at a yoga studio.
Then they let all the front desk people go.

I got food stamps.
I got unemployment.
They took away my food stamps.

Through a series of events, I found out I needed the IVIG treatment.
It seemed/seems this would be my last step.
If I needed IVIG, I would GET IVIG.
I immediately made phone calls.
I asked my General practitioner.
He said Yes.
I was ecstatic.
Then he left the room for 15 minutes, came back, and said, “On second thought: No.”
He said, “Well, you’ve made it this far so you can make it a few more weeks without treatment.”
Did he just say, you haven’t croaked yet so like let’s roll the dice- your chances are good, I thought, did he just fucking say that.

He sent me to specialists instead.
I was hopeful the Infectious Disease doctor would help.
She immediately turned me away, “your case is too complicated for me.”
I’M QUOTING: NOT PARAPHRASING.

I went to a Rheumatologist.
He said it would take him many months of hearing my history before he would even examine me.
He argued with me about the existence of Lyme Disease.
I didn’t want to fight anymore so I cried.
He diagnosed me three months later with Chronic Fatigue Syndrome or Fibromyalgia.
He said, ‘I’ve never seen someone so young, so sick. I’m sorry.”
That didn’t make me feel better.

I saw an Immunologist.
I felt hopeful.
He said I had asthma, am severely allergic to dust and mold, and have a fucked immune system.
Then he went on a mysterious leave of absence.

I casually told my Neurologist that I needed the IVIG thinking he couldn’t give it to me.
He said, “Oh you want IVIG, I’ll give you IVIG.”
What a fucking miracle.
I was so excited.

I was excited until the pending authorization was the catalyst for months of fighting and phone calls.
It got denied because Lyme disease was listed as my condition.
It took months to sort out and appeal.
It finally got approved. I was thrilled.
I called the infusion center to make an appointment all sweaty with giddiness
There was a problem. An insurance problem.
It wasn’t going to work.
I cried.
A week went by. I got sent to a new infusion center.
I called them. There was a new and more complicated problem this time.
But at least I got the approval, people said.
Stay grateful stay grateful. Eat well. Do what’s in your control. 

Weeks, maybe one month, later, after countless phone calls, I had a date to start infusion.
I was nervous it would fall through, but chose to be positive.
I was beyond excited.
I posted on social media what a triumph it was.
I started telling people! I was preparing for my life-changer.
It was Friday, and I was due to start on Monday.
Friday at 4 pm, I got a phone call.
It fell through again.
There was a new problem with the home nurses. I needed to find a different doctor for my first infusion; it was too high risk to start at home.
My body was overwhelmed, swinging on the pendulum between fierce excitement and fierce disappointment.
I wanted to give up so many times.

I did, thank the freaking heavens and angels, finally start my treatment one Wednesday afternoon.
How triumphant.
I received the drip everyday for 5 days.

There were side effects. I got a superficial blood clot.
I was up all night dry heaving with migraines. I had intense pain all through my body. I was spoon fed and carried to bed when I couldn’t lift my hand or stand up.
THAT was my triumph? My big celebration? I would prefer celebrating over a big job, an engagement, a new home, a pregnancy, a diploma, or anything else that wouldn’t result in dry heaving with migraines.

Onward.
Last month, in May, I received my second infusion.
It was easier. Much easier.
And I feel positive effects. I, again, feel hopeful.
But the authorization has run out, and the infusion center has to resubmit it to my insurance. I was scared for weeks.

I just found out that it has been approved. Exhale
But then, I have no idea where the next check is coming from because unemployment ended. I worry about my next meal. I worry about the side effects of treatment. I worry that I won’t get well. I’m sad, so sad, that this is how I’m spending my 28th year.

I talk to government-run agencies everyday just trying to get my needs met.I feel invisible.
They say, “Hopefully we will get this sorted in 3-6 months.”
3-6 months? Because I need to eat TODAY.

I’m running really low on ink in my silver-colored pen.
My positivity gasket is running on empty.
Gratitude is slipping through my hands; I’m too tired to hold it.
My heart is heavy, and my body wants to sleep.

YES, there’s been massive progress:  I can sit up, walk, climb stairs, smile, laugh,  I’ve put on weight, and I have color in my face. YES, I’m grateful for so many things. YES,
it will pass, like everything else does. And, YES, I still have remnants of belief in myself and my strength. I still have a thread of hope that I will heal completely.  But I am fucking tired.
The uncertainty is weighing on me. I don’t want to fight for my life anymore. I beg of you: hold me, ask me where it hurts, and how you can help because I am down, lonely and afraid.

Love,

Jackie