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

• Posted by Jackie Shea in Grief
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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