When I was 17, my life changed for the better...

When I was 17, I was diagnosed with children's Primary Angiitis of the Central Nervous System (cPACNS), also known as primary central nervous system vasculitis (PCNSV). The term "primary" refers to the fact that there is no other underlying disease or additional disease that occurs because of this illness.

You probably don't know what this illness is. PCNSV is considered an "extremely rare" disease because it affects 2.4 persons per 1 million people. It is even more rare to diagnose PCNSV in children...this is known as cPACNS. Both PCNSV and cPACNS are considered part of the major illness: Central Nervous System Vasculitis.

I was diagnosed with cPACNS at the age of 17 in 2005.

CNSV happens when the immune system attacks the body and mistakenly identifies the blood cells in the brain (and/or the spinal cord) as the enemy. As a result, these blood vessels become inflamed and a whole myriad of symptoms can occur.

Everyone's story with CNSV is different. There is no standard recipe or treatment of symptoms.

This is my story. I hope to raise awareness about my rare illness, provide hope to other people who live with an illness, and express how I live my life now with this invisible illness.

CNSV is under the umbrella of diseases called "vasculitis". Vasculitis is such a rare type of illness that Microsoft and the Internet don't even consider it a real word, they think it is misspelled. It is the same with the word "rheumatologist" - the type of doctors that specialize in vasculitis because they examine the blood vessels. Microsoft and the Internet also do not consider the word "rheumatologist" as being part of the English language. 

I hope that this blog can help bring these words into the dictionary of Microsoft and the Internet. If the words "cancer" and "cardiologist" can be included, why not "vasculitis" and "rheumatologist" ?

When I was 17, I was a very different person. The people I spend most of my time with now would not have  recognized me. I was much louder, more ambitious, more determined to get out of the city I was in and start living a new life according to my rules. That all changed in the summer before my senior year of high school. A lot of things changed that summer. And a lot of changes that I did not notice yet at that time were put into motion.


Ever since I was young, I LOVED theatre. My first role was the role of Snow White in my school play. I was actually only in pre-school at the time in the Philippines. I was five years old and was able to perfectly memorize the script and follow directions. I remember my cousins (more like my siblings at the time) teasing me because I had to be "kissed" by Prince Charming. My love for theatre increased as I grew up. I was in How the Grinch Stole Christmas, Annie, West Side Story, and my teachers loved all the mini-plays and skits that I led with my friends from elementary school and throughout high school. I even acted in French.  You see, I lived in Ottawa, Ontario from ten years old to eighteen years old. It's a bilingual city and I was part of the French Immersion program in high school. My parents had forced me to be part of the immersion program upon entering junior high. I did not want to be part of it at the time, because most of my current friends were attending the extended program (where you just learn French as a language and the subject of social sciences  was also taught in French. They didn't have to learn math, science and all other subjects in French except English, art, home economics, and woodshop in French, like in the French immersion program.)


So it was in Ottawa, at age 17, that everything changed for me.  In grade 11, I had been planning my future. As a Type A personality, I liked lists,  plans, and schedules.  My plan at that time was to apply to the University of Western Ontario, in London, Ontario. I think I was planning a double major in political studies and modern languages, and then intended on applying to law school at Queens, with the intention of becoming a criminal lawyer. The year before in grade 10, we had a "career" class, where I submitted this plan to my teacher. I delineated the career of a criminal lawyer, and basically wrote a "welcome brochure" for the University of Western Ontario. I was all set in these goals, and I figured there was nothing stopping me. I had top grades. All I was worried about was money - where would I get my financial aid? I was driven to become the best at everything I did so I can get the best scholarships, so I can get out of the city where I was feeling suffocated by the pressures put on me by family, and the stress of living a life that I did not want. I had given up on God at that time, to take me out of my circumstances, and had begun relying on myself to rescue me. I just didn't realize at that time - that Jesus was carrying me. Just like it says in the Footprints poem - when there is only one set of footprints during the sad times in life, it is then that Jesus carries us.


The summer of 2005 was the summer before my senior year of high school. Unlike other high school students, I was not making the most out of the "last summer of my childhood" nor was I able to enjoy a healthy social life, because my parents at that time were strict on all of my activities, and I was devoid of having the simple pleasures of socializing that other teenagers my age had at that time. My only social activity was spending time with family and playing on the soccer team on Monday evenings.

There were warning symptoms of cPACNS/PCNSV throughout my life that we just did not catch. When I was 10, I lost vision in my left eye and everything had gone black. I went to a neurologist but he never told us the reason behind why I went blind. My vision eventually returned to my left eye and I never thought about it until now - after having done research on CNS vasculitis. Apparently monocular visual symptoms are a characteristic of CNS vasculitis, also known as amaurosis fugax. 1% of the population of those diagnosed with CNS vasculitis will develop this symptom - so already at the age of 10, luck was already against me. (A friend did the math, and he calculated that my CNS vasculitis is one out of 168 people who share this symptom with me, out of the 7 billion people on Earth. When you put that into a percentage, it comes to about 0.000024%).
   
In the summer of 2005, I started complaining about these severe headaches. My mom thought that I was getting migraines because she has migraines - she figured I just inherited this poor medical condition (if only it was that simple!). I went to see my family doctor and he assumed the same thing, and prescribed me Tylenol 3. Nobody knew at that time that this was one of the major early symptoms of central nervous system vasculitis.

A couple of days after that, I had a fever - I had not had a fever in years. I was always considered the "healthiest" in my family because I hardly got sick - it seemed like my immune system was superior to others, forbade any virus, and easily attacked any germs that I came into contact. Little did I know at that time, that my immune system will soon be attacking me.


On Monday, July 25, 2005, I woke up with my sisters. We had spent the night before having a mini-sleepover. My younger sisters were 12 and 10 years old at that time. I remember trying to tell them about a dream that I had, but I did not realize that while I was telling them this dream, I was having trouble with word formation, and had trouble expressing my ideas. This is called aphasia - another characteristic of CNS vasculitis.


That day, my parents told my sisters to empty their piggy banks and count their money so that they can make a deposit in their first bank account. I was supposed to be helping in the counting. I don't know if I was unsuccessfully counting because the inflammation in my brain was increasing, or maybe because I was just angry that my sisters had money was never taken away from them, and that their life was happier and less stressful than mine, because my parents treated them differently.


My family and I went to the mall where my mom set up my sisters' new bank accounts. At ScotiaBank, I sat down on the couch and opened the book, "The History of ScotiaBank." It was a brown book with some pictures in it that seemed to be from somewhere around the time of the Great Depression. I remember being able to read the title, but when I opened the book, I just couldn't seem to read the rest of the words. This confused me. What was going on? (Losing the ability to read is also part of aphasia).


When we arrived home, my mom saw that I was upset. She thought it was because I had not seen any of my friends that summer. She sat me down and asked me what was wrong. I said, "I forgot how to read."

"What do you mean you forgot how to read? Of course you can read." She asked my youngest sister to bring me one of her books. It was a book from the series "Harry's horrible, no good, very bad day" (something like that - I remember that type of book so I recognized the title) - but when I opened the book, I was only able to discern a couple of words. I could not read the rest.


By this time, my mom figured something was seriously wrong. She called my aunt Marissa - a primary care physician - and my aunt Marissa spoke to me on the phone. She asked me the standard test of neurological questions, such as what is my full name (I only remembered my first), count to ten (I could only count up to seven), and some other questions that I failed. She told my mom on the phone that they needed to bring me to the hospital immediately.


At that time, my step-father was at work, locking up the building. My mom called him and when he came home, we all got in the car and started driving towards the hospital. I didn't know we were going to the hospital. I thought we were going to see our regular family doctor. While we were in the car, I became confused when I realized that we were on the highway. I did not know my parents were driving me to the Children's Hospital of Easten Ontario (CHEO). On the way there, I developed severe hallucinations and thought that demons were chasing us on the highway (hallucinations probably developed from having watched the movie Constantine the night before - since then I do NOT watch horror movies).  I became extremely agitated in the car and my step-dad pulled the car over in the highway. We were  so blessed and lucky that there was an off-duty ambulance driving behind us. My step-dad flagged them down with his cellphone. The two ambulance people were afraid that I might overpower them and run off into the highway - due to the current amount of adrenaline in my body. They waited for the firemen and policemen to close off that part of the highway so I can be strapped down to the ambulance.


My last memories are of my mom trying to hug me in the backseat, and then being put into the ambulance. Apparently I must have had some lucid moments when we arrived at the hospital, because my mom had mentioned that I had asked, "When can we go home?" It was going to be a long time before I got to see home again.


It was on July 25, 2005 that I had my first symptoms of a stroke/transient ischemic attack. At CHEO in the ICU, the doctors and nurses tested me for every illness under the sun and could not find out what was wrong. While they were testing me, my body began to deteriorate and I fell into a coma for thirty-two days. I am so blessed for all the prayers that poured out to me during this time. I had family by my side day and night.

Some people think that when you are in a coma, you cannot see others or sense them. But I did. I remember faces of people that were there, and I even had some dreams of conversations with people that were there. I dreamt that my best friend Izzy told me that we were 24 years old, and she was in journalism, and I had already graduated high school with four awards. When I came out of the coma, I actually argued with my mom about my age - truly thinking that I was 24. It was a while before reality hit me and I remembered that I was simply seventeen.


The doctors had told my parents that I was going to die. There was a point where I was losing so much blood, I needed six blood transfusions. There was a point where my body stopped breathing for me and I had to be intubated for about a week…people should generally be intubated for three days. The doctors believe that this caused the damage to my vocal chords, which explains why I currently cannot yell across the room without effort, and why my voice is so "soft", and people ask me more often to speak louder rather than to be quiet.


I don't think the doctors could have diagnosed me in time without my aunt Marissa, researching everything she could to figure out what was wrong with me. She pushed the doctors to do a brain biopsy on me, and it was then that they discovered that I have children's primary angiitis of the central nervous system (cPACNS). This was later confirmed by the doctors at SickKids Hospital in Toronto.

After the doctors knew my diagnosis, I was treated promptly with the standard recipe of chemotherapy and steroids. While my physical health began improving, it took a while for the rest of my whole health to catch up.


Wellness includes five parts: physical health, emotional health, social health, intellectual health, and spiritual health.

Physically, I had a lot of work to do. My body had forgotten how to walk, and so at the age of 17, I was learning baby steps again like a toddler. I was just glad that I was able to learn to stand up by myself and walk by September 2005, in time to meet Mats Sundin and other Toronto Maple Leaf Players at SickKids Hospital.  My biggest challenge was the stairs. It would take a while before I can freely run up and down the stairs, skipping two steps at a time, and jumping the last four steps to the ground.

Emotionally, I was a rollercoaster. I was extremely grateful to God that He saved my life - but I didn't have a chance to realize how grateful I should be until I heard the stories from everyone else's perspective on how close I was to death, and what they had gone through while my body was falling apart.

Then there were the days where I felt out of place. I was supposed to be a senior in high school. I was supposed to be on the Student Executive Council. I had all these extracurriculars planned out so that my transcript and university applications would look great. I was supposed to have started school in September, but instead I was still at CHEO, requiring monthly infusions of cyclophosphamide.

I felt left behind as I watched my friends discuss their plans for university and write out their applications since university applications were due in the winter of 2005. I knew that I would be missing that deadline - how can I apply to university when I did not have enough grade twelve credits to apply with? I felt my social health starting to deteriorate.

After I was discharged from the hospital at CHEO, I went to see a psychologist for testing. He told my parents that I would not get the same grades that I used to get, and I would probably be a C+ average student. Well I have never had a C+ average in my entire life. I have never even had a B average. That was unthinkable to me. I chose to reject it, and I chose to reject that the school teachers and doctors told me that I should just wait a year to "rest" and think about finishing high school next year.

Well here is where my old determination started coming back. I actually wrote letters and sent requests to teachers for homework and assignments. I was eventually able to set up my own home study during the first semester of my senior year. By January 2006, I was ready to go back to school and become a "regular student" - I graduated with (translated to U.S. terms) a 4.0 GPA (I forget the specific average on the 100 scale that my school used, 93 point something I think) and an award in social science and French Public Speaking.

You could tell there was a major difference in me from the first semester and second semester. During the first semester, I would attend school once a week (I had one philosophy class taught in French, then I would go to another classroom to complete my own studies under the supervision of the teacher there. I remember a seventh grade boy talking to me, thinking that I was a "new girl." - I didn't know what to say because at that time, my personality felt so altered that I couldn't come up with any comebacks or comments. I also hated having to fully explain myself too. At my high school we had three floors. Well, during the first semester, I still had trouble taking the stairs, so the school allowed me to have the special key to use the elevator. There was a student in the elevator with a broken leg. He looked at me without seeing my invisible illness, and asked me why I got to take the elevator. I said simply, "Because I can't use the stairs.")

Mentally and intellectually, I began improving. I was not afraid to read anymore (before I had thought I would have to relearn how to read, and wind up in kindergarten again).

Socially, I began to value my close friends and give love more to those who needed it.

If you haven't heard the song, "Live like you were dying," by Tim McGraw yet, do so. This song is basically one of my inspirations for life.

Spiritually, I would have not have been a stronger person if it were not PCNSV. God used this illness to rescue me and take me out of a situation that I had given up on. Because of PCNSV, I made the move out to the West Coast, where I lived with my aunt Marissa and uncle John for a while. In January 2007, I attended Trintiy Western University. It was through TWU that I became a stronger person, made the best friends that I could have, and met my husband.

My remission started in 2006. For five wonderful years I had perfect health and eventually tapered off all drugs. I was completely drug free for one whole year before my immune system attacked the nerve behind my left eye at the end of my honeymoon in Paris in May 2011, giving me optic neuritis.

In September 2011, PCNSV flared up again with seizures. This was called status epilepticus - and if I had known all about cPACNS beforehand, I would have known that I had the potential to develop a seizure disorder.

This invisible illness can attack at any time, but I choose not to live in fear of it. Instead, I choose to live life to the fullest, and live fully for God, so that He can work through me. Because I know that He has kept me alive through all this time for a purpose, and whatever that purpose is, I am not going to stop living so I can find out what that purpose is.

To all of you with an invisible illness too, have hope, and have faith. 2 Corinthians 1:9 says, "Indeed, we had the sentence of death within ourselves so that we would not trust in ourselves, but in God who raises the dead." I have never trusted God more than I do now. Before I had trusted myself more than in Him, and God has proven again and again, that His plans and His ways are better than mine.

 I can imagine what my life would be like if I had not gotten PCNSV. I would probably still be in Ontario. I would currently be in law school. I would be so career-driven that I would forget about the important things in living like loving others, giving to those in need, and making the special moments count.

Primary CNS vasculitis is considered an "extremely rare" disease. It occurs in 2.4 people out of 1 million. I was once told that getting PCNSV was like winning the lottery. Looking back on my life now, and everything that God has made since PCNSV, I would take PCNSV over the lottery any day.