What is a time of joy for many women was my darkest hour.
My first year of college I didn't gain the "freshman 15," I gained the freshman 40. Blindsided by a case of mononucleosis, just before spring break, my body went haywire.
Unlike standard mono symptoms, I began ballooning at an alarming rate, and I couldn't sleep. I gained 40 pounds of water weight within a few weeks, and developed excruciating pain throughout my limbs. I rapidly transformed into a real life Violet Beauregard, my legs so swollen I couldn't wear socks.
The semester ended and I came home to months spent in waiting rooms. My doctor said "mono just takes a while to kick." That didn't explain why my arms felt like they were on fire.
After drawing 12 vials of blood, the infectious disease specialist thought I had Lupus -- which didn't explain my memory loss. The rheumatologist said I'd "eaten too much McDonald's at school and gained weight from depression." I was depressed, but not from Big Macs; I was depressed because no one knew how to fix me.
Finally, my mother took me to a Lyme Disease specialist. Our neighbors had Lyme, and she recognized the symptoms. My doctor had tested me for Lyme, but the standard Western Blot test (the blood test for Lyme) can be inaccurate.
In California, it's also unlikely to receive diagnosis because Lyme originated on the east coast, and some don't believe it's prevalent west of the Mississippi. Without the signature "bulls eye rash" or memory of a tick bite, there's little chance of diagnosis. There are other blood tests, not covered by most insurance carriers, that give a clearer diagnosis.
My mother, regardless, was right and six months after mono, I started treatment for Lyme Disease.
I spent the majority of the year in bed, imagining all of the college I was missing. I lost all the water weight, as my depression let up (mostly from medication) and my pain became manageable.
I began classes at the local college part time, and, like many 19-year-old girls, I met a boy. We fell in love. He performed beanie baby puppet shows at the IV clinic to help me forget there was a needle in my arm, and made me watch the Food Network with the hopes I'd get hungry enough to eat. He understood, and I needed that.
We had our ups and downs; I pushed him away when I felt too sick, and ran back when I felt better. Finally, it came time for him to move cross-country for graduate school, but I was too sick to leave my parents, doctors, and comfort zone, so I stayed behind.
Meanwhile, college was not what I imagined. I muddled through, despite the fact that my reading comprehension had severely declined with the onset of Lyme. I received a handicap parking placard because I could barely walk to class. Before morning classes, I got injections of Bicillin -- a giant needle pumping a small milkshake of antibiotic into my lower back over the span of 10 minutes. One day, by the time I made it to class my whole back was covered in blood; the injection site had leaked.
Later, I switched to Rocephin, an antibiotic that you mix with saline before self-injection. One night, there was a party at my house and as I mixed the vial a girl across the table asked if I was a heroin addict. She added that I really looked like I could be.
Instead of graduation, I went to the ER. My best friend read me excerpts of Chelsea Handler books while I was doubled over in pain from Rocephin-induced gallstones. I kissed college goodbye, sure that I'd traded the milestones of young adulthood for waiting rooms that smelled faintly of iodine. I'd missed out on the-best-four-years-ever-raucous-co-ed-spring-break life, and all I had to show for it was a lousy diploma and no fear of needles.
After graduation, I moved a few hours away for a fellowship at an awesome nonprofit. At first, people tiptoed around my disease. Some didn't understand why I didn't eat much. Lyme causes food sensitivities, so food and I aren't really friends. Others didn't understand why I had handicapped parking. Walking IS really hard.
Lyme is cyclical, so nobody understood why I was fine to go out one day and totally immobile a week later. I didn't talk about it with people, so my friends and boyfriends didn't understand; I'd put up a good front, not wanting help or special treatment, and when I'd get too sick I'd snap, driving them away. Those relationships never went anywhere, but the fellowship did.
The nonprofit hired me, with benefits, just before I lost insurance through my parents. On my first visit to my new doctor, she handed me a pamphlet stating that Lyme specialists were preying on gullible patients who weren't sick. She wouldn't treat me.
I went back to my old specialist and continue to see him years later without the assistance of my health insurance. The one thing more infuriating than doctors not believing you're sick is paying your medical bills out of pocket, despite having insurance.
So, here we are, nearly nine years after this story began. In retrospect, I realized a tick bit me just before my 18th birthday, and the disease lay dormant until mono weakened my immune system. That, however, is just my origin story.
Now, I have a job I love, even though it's really hard to get out of bed every morning, and between my nonprofit salary and medical expenses I'm nearly broke. I have a handful of great friends I can be myself with because they have problems too --cancer, Lupus, Addison's, depression, you name it.
I'm not the weird sick girl I was in college. As I get older, hiding my problems isn't really cool or mysterious, it's isolating and depressing. Now, I'm taking things one step at a time, with the hopes that one day I'll fully recover, and maybe others won't have to go through all of the pain, money, and waiting rooms I did.