When I was 16 I had my first real boyfriend. Hormones, puberty, and "love" were all things that I was experiencing. Most of my friends were all in relationships, or were on the pill. After suggesting going on the pill by one of my close friends, I talked to my parents and they had agreed it was a smart move considering my periods had been irregular, and I was just beginning to be sexually active.
Being on the pill was fine for me, I didn't gain any extra weight, I didn't have mood swings, my period was regular, and everything just seemed really normal. I of course still used precautionary measures while on the pill, as everyone should.
After about six months of being on the pill, I started to get obscure bouts of blurry vision.
The first one I remember was over the summer, while I worked retail at the local mall. I was walking through the store on a particularly unpopular day, and my head started to feel really heavy. My eyes felt like they were going cross eyed, and my vision started to fade in and out. It was honestly like a bad drug trip, I felt like everything around me was moving in and out and I was stuck in the middle unable to stop it. It was pretty freaky, but it stopped after a few minutes. I went to the break room and drank some water, and carried on with folding the front displays of the store.
I never told anyone about it because I thought it was just because I was dehydrated, and it didn't happen again for awhile.
Around October of my senior year, It happened in class once or twice. Again it lasted a few minutes, and I would just ignore it. I would also get these blue spots on my fingers that would always hurt; like someone was stabbing me with needles. Come the beginning of January, after just cast in my last high school show of "The Addams Family," we were starting the nine hour Saturday rehearsals.
While at the first dance rehearsal, my right arm became sore. I thought that I probably had slept on it wrong, and tried to stretch it out. Later in the day, I was looking at myself in the large dance mirror and noticed that my right arm started to twitch a bit when I was standing still.
It was bizarre, I had no control over the moments.
The pain began to worsen and I was hit with a blurry vision spell. This one was the worse one yet, and my head was in excruciating pain. I sat down on the floor and my director came and checked one me. She had me sit off to the side and drink some water. The pain subsided, but I deiced to call my dad to come get me. I went home and went right to bed, I really didn't feel like myself.
The next morning, my right shoulder and wrist were bothering me. Had I pulled something? I couldn't think of how I could have injured myself. I spent that Sunday just lounging around the house, sleeping, and trying to get some homework done.
Come Monday, my dad wrapped my wrist in an ace bandage and sent me to school, hoping the pain would go away by the end of the day. It was the first Monday back to school after winter break, and my second semester classes had just started. In my Participation In Government class, we had to take a pre-course assessment test to see how much we knew.
Picking up a pencil to try and write my name seemed nearly impossible.
All of a sudden my vision became blurry again, and I tried to write anything, but I couldn't. After struggling to write, I told my teacher that my wrist was really bothering me and that I couldn't write my test. He sent me to the nurse where they looked at it, they said that it might just be sprained but no clear damage. Luckily my professor told me that they could have a scribe take the test with me on the next class day, until we figured out what was wrong with me. I sat through all the rest of my classes that day, physics and calculus, and I just knew something was wrong.
Laying in bed that night though, I began to have uncontrollable muscle spasms. My right shoulder wouldn't stop twitching. It was a constant shrugging motion, back and fourth. I walked out and showed my dad, and he was confused. He thought I was playing a joke on him, when really my body was moving all on its own.
The next day I went back to school, and I felt like I had no control over my own body.
In a matter of three days, I had lost nearly all control of mobility of the right side of my body. In lunch that day I called my dad crying begging him to pick me up and take me to the emergency room. I was limping through the hallway, I couldn't stop twitching, I couldn't even lift my own arm above my head without it falling. Picking up a pencil, my hand would cramp up and start shaking. When he picked me up he brought me to the ER, scared that something was really wrong with me.
We spent six hours in the emergency room getting tested for things. They took blood, did a neurological assessment, had me walk, they even did one of those old school vision tests. None of the doctors knew what was wrong with me. The prescribed me some muscle relaxers to help with the twitching, and they made me an appointment to get an MRI done. Unfortunately, I still had braces on, so before I could sit in a giant magnet, I had to get them removed.
We were able to make an appointment to get my braces off almost immediately, and my orthodontist replaced them with a plastic retainer.
A few days later I went in to get an MRI done. They tried to take pictures, but because of my twitching, I couldn't sit still inside of the machine. They had to give me anesthesia and put me under so that my movements wouldn't cause a distorted image.
After waking up from the anesthetic I threw up all over myself, and I had a tingling feeling going all the way down my left arm. I mentioned something to the nurse and she told me it was normal. The MRI's were sent to a neurologist who saw that I had unusual grey matter in my brain. He ultimately wanted to test me for Multiple Sclerosis, Early Onset Parkinson's, and Muscular Dystrophy.
Needless to say I was terrified, my dad was alone and had no idea how to comfort me, and everyone around me thought I was crazy. Guys at school would make comments about me, calling me the R-word. I looked like I was disabled, I had Bell's Palsy on the right side of my face, and I couldn't walk normally.
I had to drop out of two of my classes, which was hard for me because it meant I wasn't going to get my advanced diploma.
I missed so much school due to these symptoms; close to 3-4 times a week I would miss school. Doing anything was a hassle, getting ready took me longer. I wore leggings or sweatpants every day because I couldn't button my own pants. I only wore slide on shoes because I couldn't tie the laces. I didn't even wear makeup because I couldn't lift my right arm high enough to reach my face.
My first round of testing included something called an Electroencephalogram Test (EEG Test), which was to test for any irregular brain wave patterns. The doctors placed small sticky pads with wired connected to them around the circumference of my head. I had to sit in front of a few monitors, and I had to tap a button when I saw the color red, or at other clues they gave to me. The test took about 45 minutes, but I had glue in my hair for another week.
My second round of testing was Lumbar Puncture, or a spinal tap.
This one, this one was the worst. The basis of this test is to collect spinal fluid with a hollow needle to test for any neurological diagnoses. I was not aloud to eat or drink anything 24 hours before the procedure. I had to wear a hospital gown with an opening in the back, so that they had easy access to my spinal cord. Because this procedure involved spinal fluid, they do not give you any anesthetic other than a lidocaine shot to numb the area.
It was the single most painful thing I have ever experienced. It felt like my spine was expanding from the inside out. The numbing kicked in pretty fast, and the doctor inserted a needle between my 3rd and 4th vertebra to extract spinal fluid. After the procedure, I had to lay flat on my stomach to ensure no air bubbles would form in my spinal cord, otherwise air in the brain can be deadly.
After the spinal tap, I couldn't bend over for a few days.
I had to cover the puncture with a bandage, and I couldn't get it wet, which made showering really hard. Both the EEG and Lumbar Puncture came back negative for any type of neurological problem. It was so frustrating, we had been doing test after test to see what was wrong with me and everything came back inconclusive.
February break came around, and I went on vacation to Florida with my aunt and uncle. I was still having symptoms of whatever that was wrong with me, but I needed to get away. We went to a theme park one of the days we were gone, and it was a long and tiring day. I still couldn't walk on my own for more than a few moments without having to stop or sit down. By the end of the trip, I started to feel better. My twitching wasn't as bad, and I just felt more like myself again.
The symptoms subsided around mid March, it was odd, and my doctors were confused how the symptoms had just stopped.
I still would get unbearable headaches and migraines, but I could write normal again, I didn't have a limp, my face wasn't droopy. It was like a miracle, but my doctors still wanted to get the the bottom of what was wrong with me.
By early April, my neurologist scheduled me another MRI and a CAT scan, which was to take an X-Ray of my veins and capillaries. They injected me with a dye to aid in the image capture. The doctor told me that the dye was going to make me feel really hot, and that I might feel like I was peeing. I can indeed confirm that I felt like I was peeing myself.
Immediately after the MRI and CAT Scan, my dad and I went back into my neurologists office and he informed us that I had to be admitted into the hospital immediately.
The MRI showed that I had three blood clots in my brain, and that they think that I might have had a stroke.
The immediately did an external echo-cardiogram, which is a sonogram of the heart. There was like 4-5 doctors in the room while this was all happening, reading my scans, and trying to figure out what happened. The external echo showed that I had a tumor on my mitral valve, that was breaking off and causing blood clots in my brain, which had caused me to have three minor strokes in a course of three months.
I was relieved that we knew what was wrong, but how did this happen? The doctors did a blood test, which came back positive for Lupus Anticoagulants.
I was born with a rare auto immune disorder that causes my blood to clot more than normal, and mixed with birth control, it was inevitable that I would have had blood clots. My doctor told me that I was luck to even be alive, and that they had never seen someone have that many strokes and be nearly fine. My brain had rewired itself to compensate for the loss of functions I had for that time.
There was finally a light at the end of the tunnel, but it wasn't quite over yet.
They had me stay at the hospital for a few days for testing. I was put on a heparin drip, there I had to have an internal echo-cardiogram, and I had to receive lovenox injections in my stomach which were supposed to help reduce clotting.
The internal echo was terrifying. They gave me a local anesthetic so I was not completely knocked out. They had to place a tube down my throat with a probe at the end. The doctors wanted to get a better look at my heart from inside my esophagus. Halfway through, I woke up during the procedure. Apparently its a common thing to happen with local anesthetic, but I was so scared.
After I woke up having a panic attack and balling my eyes out. Luckily my step mom was there, and she comforted me. I called my sister and she talked to me as well, that whole day was a blur. Staying over night in the hospital was not ideal, although they did play lullabies every time a baby was born.
My cardiologist came to visit me the next day, and told me that I had to start planning for surgeries.
He told me that they would probably have to do open heart surgery, which would cause me to miss my senior trip, my senior ball, and graduation.
I think i straight up laughed in my doctors face and told him that there was no way I was missing my senior trip. I had paid hundreds of dollars for that trip, and I was freaking going. I wouldn't take no for an answer, and my dad had my back, so we agreed to schedule the surgery when I got back from my trip.
After getting discharged from the hospital, I had to give myself shots in the stomach twice a day. My abdomen was black and blue, and it was pretty painful to do anything. My doctor advised me to take it easy on the senior trip, and I had to take Warfrin sodium tablets once a day to regulate my INR level, which is medical jargon for how fast my blood clots.
I went and enjoyed my senior trip in Disney World with all of my best friends, spent my 18th birthday at magic kingdom, and I was so happy and I felt healthy. I didn't have any issues at all over the trip.
When I got home, I had another echo scheduled to check to size of the tumor.
By some miracle, my tumor was completely dissolved and gone. The blood thinners I was on had gotten rid of it, which the doctor had told me was unlikely. I was able to go to my senior ball, and walked the stage at graduation.
My doctor was amazed, and he said I was a one of a kind case. I graduated with a 3.6 GPA, and I had gotten accepted into my dream school.
I am healthy now. I'll have to be on blood thinners for the rest of my life though. I currently take Pradaxa twice a day, which is essentially a medication for old men, but it does the job.
Through all of this, I looked death in the eyes and decided that my life was actually worth something. I learned a lot about myself; how strong and resilient I really am. I couldn't thank my family, friends, and doctors enough for being patient and helping me through the hardest time in my life.
There was nothing scarier than feeling out of control of your own body, and that made me see and appreciate the world in a different way.
I'll never take my good health for granted again.