My MS Story

I’m not brave. Brave people have choices. I was given no choice.

 

The story begins on Valentines Day 2012, the day I ended a year relationship and did not shed a single tear. I felt cold. I liked it. Something after that day changed my personality, I needed to be “high” all the time.  I’m not talking about doing marijuana or any other drug, I needed that feeling of elation all the time.  My personality became extremely impulsive.  There were some activities that I adopted that were beneficial, like my running. I started running 10+ miles everyday, I was after that runners high.  3 miles just didn’t do it.  I needed to run all of Manhattan.  I would skip meals.  I liked the feeling of having control over what I put into my mouth.  I became an excessive caffeine addict. One venti soy misto just wasn’t enough, I needed three.  I liked my cigarettes. I liked my cigarettes with my coffee, with my vodka clubs, on my fire escape, after my runs, …you get the point.  I shopped excessively, hence my extensive sweater and skull tank top collection now. 500 dollars once a week on my credit card didn’t scare me, but not being “high” did.  I would drink a lot. Needed to get that feeling. Needed it.  I liked this quote. “Moderation is a fatal thing. Nothing succeeds like excess.” And that’s what I lived by. What was I after? I still don’t know to this day.

Three months into this impulsive stage of my life I started noticing something was off. I would walk to school, which was 25 blocks away, and I would sit down in my seat and be pretty much blind in my one eye.  I would blink it a million times, stretch it open, try to get something out of it that was causing the vision block. Nothing worked. After calming down, taking off my jacket, and finishing my coffee it would go back to normal.  I often joked about my condition in class.  I would say things like, “I can’t read the board because I’m blind in one eye.”  My roommate said it was probably the face wash I was using, my dad said it was because I was a vegan, my mom told me to eat fish.  I often tweeted, “Run 3 miles, go blind in one eye, run another three.” I had no idea what was wrong with me. I thought I wasn’t getting enough vitamins between my running, veganism, and skipping meals. I started taking supplements daily. No change.

By the end of May, I still didn’t go to a doctor, and my eye was only getting worse. My girlfriend and I were on vacation in Myrtle Beach and I decided that this week I was going to eat fish and see if their was a difference in my vision.  I ran every morning in the hot sun of South Carolina, completely blind in my right eye. I remember eating Mahi Mahi and Salmon and convincing myself I was feeling better.  I remember this particular walk my girlfriend and I took on the beach.  She asked me about my eye, and I responded, “It’s definitely getting better, it must be the fish.”  But I think I knew it wasn’t getting better. I remember walking around and everything glistened in the sun, it was all a blur.  I couldn’t focus, I felt like the sun was too bright, and I could barely see.  It was quite beautiful, it felt like a dream.

In June I finally decided I would go see an eye doctor on Park Avenue.  An ophthalmologist to be exact.  An ophthalmologist deals with diseases of the eye.  I sat in the waiting room, my eye actually feeling a little better.  I had no idea what the doctor was going to say, I wasn’t nervous though. He was an older gentleman, seemed to be very knowledgeable. I liked that.  He looked into my eye with a bright light and told me to look left and then right.  Three seconds after that, he told me that the nerves in my right eye were all damaged and some were dead.  What did this mean? My eye was slowly dying? I was confused.  He then gave me a color test. He told me to look at the same shade of red while closing the left eye and then the right eye.  The red had a tint of gray in my right eye, the bad eye.  I then did a typical eye exam. My right eye couldn’t even see the biggest letters on the chart. All wrong.  I started crying right then and there, I knew something was wrong. How could I put off this problem for two months?  The doctor handed me a tissue like he deals with this all the time.  And this is what he said, “Considering your mother has Multiple Sclerosis, and the fact that you are suffering with Optic Neuritis, you most likely have Multiple Sclerosis.”  I was balling, he told me I needed to get an MRI immediately.  I left the doctors office and went into the waiting room.  I needed to go home. This can’t be happening. I sat down in one of the chairs and called my mother. “Mom, he thinks I have Multiple Sclerosis, I need to come home.” My mom started crying, and screaming. It was the most painful feeling I have ever felt. Here I was in New York City, two hours away from my mother, crying in a doctors office, as I listen to my mother scream in pain asking God why.  She kept repeating, “This is all my fault. Why God why? Why my daughter?”  I was on the next train home.

That week at home I scheduled my MRI in Manhattan, since I had to go back to work.  I was working blind in one eye for three months now, no difference now, except now they think I have an incurable disease.  I went to my MRI alone. Of course I didn’t want to go alone, but I knew as soon as it was over I could jump in a cab and go home.  I don’t even remember being nervous for my first MRI.  I remember just telling myself that everything was going to be okay and this was just something I had to do. I prayed to God the whole time I was in that small hole that made loud clicking noises.  I envisioned myself on a beach. I envisioned myself being healthy.  They gave me a small ball I would squeeze if I needed a doctor. I kept wanting to squeeze that ball and get out of this horrid nightmare, but I knew if I squeezed it, I would have to start over. And I just wanted to be done.

My grandmother, told my mom about Wills Eye in Philadelphia. She said she prayed about it and it “laid heavy on her heart for me to go there.”  So that week, my mother and I made the trip into Philadelphia to see a doctor at 8am.  I remember always enjoying this time with my mother. We would laugh about our condition and make it a complete joke.  It was the best medicine.  I went in for a variety of eye tests, that I didn’t do terrible on.  I told the doctor that I was a vegan.  Sure enough my mom jumped in, “And she was smoking and only eating 500 calories a day!” Leave it to my mother.  The young doctor looked at me with these eyes that I knew he was judging me. Probably thinking, this girl doesn’t need an eye doctor, she needs a therapist. I remember being at the hospital all day. Test after test after test. The doctors sent me home that day with no answers. They said we needed to wait for my MRI results to be in to find the real problem.

The next week my test results were finally in, I picked them up from the opthamologist office and of course I decided to read the results myself, because I am definitely a qualified doctor.  “Lesions on the brain atypical of Multiple Sclerosis.”  Atypical? Okay, Doctor Monica, what does that mean? You don’t have Multiple Sclerosis? No brain tumors. Okay, that’s a relief. No cancer. Another relief. “Needs to be tested for Vestibular Disorders.” What? Doctor Monica needed to google that immediately. What did I read? DEATH. DEATH. DEATH.  I called my mom crying. She told me to stop reading the results without a doctor, I was only going to make myself sick.  All I knew was that I had lesions on my brain, but they didn’t think it was Multiple Sclerosis anymore. What the hell.

The week after that I had my first appointment with a Neurologist in Southern New Jersey. A handsome older man, who also was my mothers doctor.  He looked at the pictures of my brain and said, “You do have lesions on your brain, but they don’t correlate to a typical diagnosis of Multiple Sclerosis. We need to get you a detailed blood test and also a spinal tap.”  So that’s when I thought I had aids, syphilis, Hepatitis, blood cancer, and everything else under the sun. I just WANTED a diagnosis of Multiple Sclerosis, because obviously something was wrong with me, and I would rather it be Multiple Sclerosis than any other fatal condition.

I went shopping before my spinal tap. I bought cool hospital clothes. I called them my “hospital pants”, if I was going to be coming out of the hospital in a wheel chair I needed to look hot.  The hospital gave me socks so my feet wouldn’t be cold in the hospital gown they gave me.  My mom came with me, I remember dancing around in my hospital gown making everyone laugh.  I was given the option to go under during the procedure or stay awake. “Can my mom come with me?” The answer was no, but I had an amazing nurse named Sandy who was also a mom.  I decided to stay awake during the procedure.  There I was on a stretcher.  I thought about my life. What was I doing on this stretcher? A couple months ago, I was running around Manhattan, loving my life. And now I have something seriously wrong with me.  I stayed positive.  The doctor took me into the surgery room and told me to curl up in fetal position, it was comforting. I held Sandy’s hand as he numbed my back by sticking a needle into my spine. It was the most bizarre feeling.  Now it was time to draw fluid from my spine, the first time he went in, he hit a nerve. My entire leg felt like it got electrocuted and I screamed in fear and started crying.  I held onto Sandy. She wasn’t my mom but she was the only comfort I had. She told me it was going to be okay.  I was vulnerable and listened to her. Twenty minutes later, he finally got the spinal fluid he needed. Now it was time to draw about a quart of blood from my arm. Maybe not a quart but it felt like that.  Ten test tubes needed to be filled. I talked to Sandy about her son, maybe she would hook me up. Am I crazy? What mother would want a sick girl for her son? After all the blood was drawn I was rolled into a recovery room where the nurses would feed me caffeine and I could watch television and see my mother.  I wasn’t allowed to walk, or do anything physical until I felt better.  I really didn’t feel that bad though.  When it was time to leave I was rolled out to the car in a wheelchair. My mother limping by my side. I often wonder how my mom felt in this moment. She needed the wheelchair more than me at that moment. Well, we both needed wheelchairs.

The next week I was back at Wills Eye in Philadelphia.  If you feel frustrated with this horrific story at this point, and are screaming at the screen like, “WHERE IS THE DIAGNOSIS?” You know exactly how I felt at this point. The spinal tap results were sent to Wills Eye and they also had my MRI results to compare it to. After another long day of testing I finally got called into the doctors office. The spinal tap results were weird.  Over 90% of people with MS have oligoclonal bands in their spinal fluid.  They said that three bands need to be present for a true diagnosis of Multiple Sclersois. I only had two bands. Normal people have one band.  Weird. And confusing. Plus the lesions on my brain were atypical of Multiple Sclerosis.  So this is what the doctor said, “You don’t have Multiple Sclerosis. You need to start taking vitamins. You like the gummy ones right? Take those.” My mom and I started crying and thanking God. I didn’t have Multiple Sclerosis. I was just severely malnourished.  We went straight to the bar across from the hospital on Walnut Street. It was time to celebrate!

I told everyone that they thought I had MS, but now I don’t. I even wrote a tweet about how God healed me.  And how positive thinking healed me.  I went for a follow up appointment with my neurologist Dr. Sam, he wasn’t satisfied. He wanted me to get another MRI and his take was that I was in the early stages of Multiple Sclerosis.  I was angry.  Why couldn’t the doctors get their stories straight? FIGURE IT OUT. Don’t tell me I need to take my vitamins and then tell me I am in the beginning stages of acquiring an incurable disease. Ridiculous. “There’s nothing we can do at this point, we just need to be patient and see what the next MRI says.”  Okay. Lets be patient. Lets wait while my brain slowly deteriorates. Lets be patient. I don’t have time to be patient.

The next MRI came in early January. Do you believe it has already been almost a year since the story started? My best girlfriend came with me that day. She sat in the waiting room for me the entire time. Two and half hours. That’s love.  The MRI was a little different than last time, he wanted a scan to be also done on my spine now,  since I was experiencing this electrocution feeling whenever I put my head down. Great. The lesions have spread to my spine, I thought.  I also needed to be injected with contrast this time around, something that makes your brain light up. Joy. Shortly after the injection I noticed my tongue getting itchy, the back of my throat feeling tense, and my whole body started itching. I waited another couple minutes praying my throat wouldn’t close. I didn’t want to press the panic button and have to start all over. The feelings got worse, I needed to get out immediately, I felt like I was dying. I pressed the panic button. As soon as I got out the doctor came running in and asked what happened? I gasped, “My throat is tensing. My tongue is itchy.”  He said I was having an allergic reaction to the contrast, which is rare, but I needed medicine to stop the reaction. He injected me with some anti-allergy and shortly after I felt better. Hives completely covered my body, and those took a while to go away.  Back in the noise making tunnel, only an hour more to go.  I wanted to die.  I wanted to be a normal 22 year old again. I wanted to drink with not a care in the world, and be hopeful about my future. But everything was changing.

I walked home that day with Kelsey, extremely groggy. I went into my room, pulled the shades, and slept the entire day. I didn’t want to wake up.

The next week, I had my neurologist appointment. They compared my old MRI to my new MRI. I had new lesions that formed, that WERE typical of Multiple Sclerosis. Dr. Sam told me right then and there I had MS. And I needed to think about what medication I would want to be on, that would slow the progression. My mom exclaimed, “But we still aren’t sure that she has it right??” Dr. Sam responded, “No we are sure.”  My eyes teared.  My mom looked scared.  All  I could think about was my future husband. My future children. My career. What would I become? What would happen to me? I had no answers.  Dr. Sam said I was healthy and strong, and my prognosis looked good. But he wasn’t sure either, MS is an extremely tricky disease. It’s incurable and no one knows what direction it will take.

I went home that day and stayed in bed all day.  My other best girlfriend came over and brought me green juice and vegan muffins. The way to my heart.  I was heartbroken.  The life I envisioned for myself was completely different. I didn’t pencil in, “Maybe get an incurable disease” to my life plans.

I started going to a new neurologist closer to where I lived in Manhattan.  There is an MS specialty center at the NYU hospital in Manhattan.  It was perfect.  I was under great care, and I started Copaxone. Copaxone was a daily injection I give myself. (If I remembered) I get weird feelings in my head sometimes, pins and needles are a daily occurance, and I lose feeling in my limbs sometimes, but you know what, it’s okay. I can deal with it.  I take it day by day.

After moving to Philadelphia, I adopted a 100% plant based whole food diets and went off all medication.  I made the decision to not inject myself daily with medication that I really didn’t know the long term effects. But what I do know, is that there is no harmful side effects to a clean diet.

My life has changed. But I don’t think it changed for the worse. I think my diagnosis made me a better person. More grounded. Not as impulsive. More careful. I take care of myself now. Before all I cared about was instant gratification. Not what would happen down the line. I am so thankful for the support group I had during this time, I don’t know how I would have done it without you guys.  Especially my mother. Thank you for showing me that nothing is out of reach, even when you have an incurable disease.

Thanks for reading my story! And keep up with my blog for lots of fun things.

XOX

Monica

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One thought on “My MS Story

  1. I stumbled across your blog by a miraculous string of clicks across social media sites, but I believe it was by no coincidence… I have a strong faith that everything experienced in life happens for a specific reason. I read your story and your other posts, and I am completely inspired by your positive view of life. Somehow without intending to, I found hope, something that I haven’t been familiar with in a long time. Last year around this time, I was admitted into the hospital and diagnosed with anorexia, something that I never chose, but continuously blame myself for. Everyday I battle against the reality of my life and the grip that this mental illness has on my mind. Just like you I take it day by day. I know we are not in the same circumstance, but in reading your story I didn’t feel as alone as I usually do.
    You claim that you’re not brave because you weren’t given a choice, but I honestly think that you are. I believe that waking up everyday and getting out of bed despite the struggles is brave. I believe that choosing to focus on optimism even though there’s temptation to be weighed down by negativity is brave. And I believe that forcibly carrying a burden you did not volunteer for is the bravest thing at all.
    I’ve typed this reply and erased it twice in fear that I would be met with an implication of being “some internet creep”. But throughout the day my thoughts were tortured by the idea of not saying something that could potentially make a difference in your life, as you did in mine. I would like to say thank you for giving me a glimpse at the light that life has to offer. I wish you the best in whatever road that life has you travel.
    Stay Strong.

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