Julia's Fight with Chronic Illnesses

My name is Julia. I'm 22 years old, but you won't find me doing things your typical 22 year old would be doing (i.e. attending school, having a job, going out with friends, etc). Instead, I'm living with my mom and dad, chugging Ensure drinks in a fruitless attempt to gain weight, my boyfriend washing my hair in the sink because I'm too weak to do it myself.
At the beginning of treatment in summer 2019, you'd find me wearing blue nitrile gloves and prepping the PICC line in my upper arm for one of three IV antibiotic infusions each day, lugging my oxygen concentrator in the car to head to an appointment, or sipping bone broth with the hope it wouldn't come back up later.
From September to November, it was rare to find me out of bed at all. 

When I was nine years old, I developed a slew of frightening symptoms within months after being bitten by a tick on a camping trip with my family. My eyes stopped connecting with my brain properly, something called "depersonalization", causing me to feel like I was watching my life through an autopilot dream from the inside of a fishbowl; migraines that caused me to lose vision and vomit from the pain for hours at a time; mood swings cycling between rage and despondency; inability to catch my breath, chest pain, and rapid heart rate, even if I was just sitting still. 
Over the years, these symptoms increased in severity and new ones were added to the already overflowing platter. No matter how many doctors we saw (upwards of twenty, all of different specialties), we came out of every appointment without an answer, having been shrugged at and occasionally told that I was suffering from an anxiety disorder.
In high school, I was diagnosed with severe depression. I spent much of my time on psychiatric medication and in therapy, but none of this alleviated the pain I was experiencing. 
It all came to a head when I was temporarily attending school in Los Angeles; I became so exhausted I couldn't keep myself awake for more than a few hours each day, nor could I keep down any of the food I was eating due to the severity of my nausea.
My parents brought me home and straight to my primary care ND at the end of 2017, who first diagnosed me with mono from a plunge in my immune function, and then tested me for Lyme disease. The results came back positive.
Since then, I've seen three different LLD's (Lyme-literate doctors) to whom I am eternally grateful; they brought to light everything I'd been experiencing for the past thirteen years.

In September, I spiraled downward yet again. It seemed there was something big getting in the way of my treatment, something that we were missing. I was so weak I could barely keep my body upright. I was running fevers daily, becoming exhausted all the time again, and losing weight, even though I was eating regularly. My heart was pounding relentlessly and off-beat, my shortness of breath increased so much I began gasping for air, and my chest ached. Something wasn't right, and my LLD agreed, so I had an echocardiogram and met with a cardiologist.
In the beginning of October, I was diagnosed with myxomatous mitral valve degeneration. Details about this are listed below in the "diagnoses" segment.
After more tests were run, it became very clear that I am immunocompromised, have markers indicating an autoimmune disease, and I am in metabolic acidosis, which means my kidneys are failing to regulate the pH of my blood and causing it to be acidic. 
My PICC line was pulled in October and all Lyme treatment is on hold until I get more answers and the more acute symptoms under control. 
Until then, I play a constant game of good day/bad day roulette. 

DIAGNOSES:
I suffer not only from chronic Lyme disease, but from several advanced tick-borne co-infections, including Babesia, Bartonella, Anaplasma, and Ehrlichia.
On top of those infections, I also have several other diagnoses:

- POTS (postural orthostatic tachycardia syndrome). This causes my heart rate to be extremely high, resting or standing, and my blood pressure to be very low. 

- PCOS (polycystic ovarian syndrome), which is a hormonal imbalance that may eventually lead to infertility.

- Hypermobility spectrum disorder/connective tissue disorder: eventual genetic testing will determine which form of HSD I have (possibly one of 13 different subtypes of EDS - Ehlers-Danlos Syndrome). My connective tissue is weak and overly flexible; this can cause many problems down the road such as chronic physical pain, complications during surgery, joint dislocation, etc.

- Dysautonomia, a condition that causes the autonomic nervous system to malfunction (or not function at all) and put all of the bodily systems into distress. Both POTS and EDS are classified as dysautonomic illnesses.

- MCAS (mast cell activation syndrome), an immunological condition that causes histamine reactions at random to any external substance at any point, causing flush reactions, hives, redness, itching, bloating, rashes, etc. The mast cells in my body will react to anything and everything as though it is an allergen, even when it isn't.

- MVP (mitral valve prolapse)/myxomatous mitral valve degeneration. The mitral valve in my heart has collapsed in on itself and is regurgitating (leaking) blood back into my heart, starving other bodily systems of necessary blood. Although this is a common condition that usually causes very few symptoms for those affected, my regurgitation rate is high, and I experience clear symptoms that range from mild to severe depending on the day.  As this is a degenerative condition, I will eventually need open heart surgery to replace the mitral valve when it finally fails. 

Because of all of these diseases, I experience a wide range of symptoms.
I can go a day or even a week feeling okay, and the next I will be rendered bedridden by cluster headaches/migraines, shortness of breath, heart palpitations, joint pain, nausea & vomiting, physical weakness, recurring fevers, chronic fatigue/intense exhaustion, and countless others. My day-to-day health is entirely unpredictable, which disables me from working, attending school, and ultimately living a normal life. 

I am on supplemental oxygen for shortness of breath, several supplements and prescription medications, and for several months, had a PICC line (peripherally inserted central catheter, or IV port in the upper arm) so I could administer antibiotics from home. I am in the queue to see several different specialists with high co-pays and months-to-years-long waiting lists. I also require cell membrane repair therapy at a specialty clinic out-of-state, which is incredibly expensive, but is my only ticket to a possibly tick-borne-illness-free future. 

Insurance covers very little of my treatment; the CDC does not recognize advanced tick borne illnesses (for more information on this, see the documentary Under Our Skin or visit www.lymedisease.org). Even HSD and dysautonomia are greatly misunderstood in the medical world, which is why these chronic illnesses are often referred to as "invisible illnesses". Those of us who suffer from invisible illnesses are constantly disregarded and humiliated by doctors, told we are "faking it" despite endless evidence, and often fail to get the treatment we need to thrive - or even to live.

I'm lucky that I have parents to support me while I'm too sick to work, but my mom is working multiple jobs and my dad is at the age that most people would be retiring, but since they're still financially supporting me, he can't retire, and is searching for a job so he can continue to do so. All of my family's money goes toward my medical bills and basic living costs. I applied for and received a grant from the LymeLight Foundation, the money from which can only be used for very specific treatments. Because my unwellness is spread so far and wide, the grant cannot begin to cover all of it, and I'm asking for your help. 

I'm currently spending much of my at-home time working with an editor to process my autobiography. Storytelling has been a passion of mine since I could speak, and writing since I could hold a pen, and in the past several months, I've chosen to put my love of writing, knowledge of chronic illness, and fascinating, funny, traumatic, frustrating, beautiful and wonder-filled past into print. My story deserves to be told to educate & connect with others, and remind those who are also struggling that they are not alone. 
I desperately want to live a full life; I want to heal so I can attend school and get the credentials for a job that will allow me to help others. Things like international travel, camping trips, and even things as simple as hikes are far-fetched fantasies. I look forward to the day those things are tangible and reachable, not impossible dreams. I want to live comfortably within my own body, and repay your generosity tenfold. 

My Mom (Katharine), Dad (Charlie), partner (Nathan), and I all thank you for your generosity.
Thank you for helping me towards a livable life.