The following section was created when I was rehabilitating from a lupus episode in 2001. I have left it as it was originally created, which will include: typos, grammatical errors and formatting errors. Please bare with it as you read. I look at this from time to time to remember how far I have come. The only changes that have been made are the divider images, so they match my page. You know me... everything has to match!
I was born on May 12, 1982. I grew up and lived life as any teenager would. Parties, late nights, study groups, cheerleading, sports, drama, and even student council, I was quite the joiner.
I was diagnosed with Lupus SLE when I was 15 years old (Lupus is an autoimmune disease: you can read more in the Lupus Link section). Now high school is hard enough, but to be sick and not look sick is even harder. There are those people who look at you and say "why can't you do this?" And at the time, I didn't want to be sick. So I ignored it and I was very lax in my health care. One of the biggest mistakes I will ever make in life was that.
After 4 year of aches and pains, things that could be controlled, my world was flipped into what seemed like a bad dream. April 25, 2001 is a date my family and I will never forget.
In December of 2000, I started to get migraine and tension headaches very badly. I had no idea that my body was trying to tell me something was about to take a turn for the worst. I chalked those headaches off to stress and thought nothing more of them. When the pain was too intense for me to function I went to see my doctor. She game me two types of medication, one for migraines and one for the tension headaches. I have to tell you, pain is pain, and mine was so intense I could not tell night from day, let alone migraine from tension. So I used the migraine medication way too much. This prescription was a horrible idea. We succeeded in helping with pain, and also in masking the symptoms of something far worse.
In late April of 2001 I went to work as usual, but I found it hard to work and concentrate. My right hand was not responding to what my brain was telling it to do. I could not move my computer's mouse, so I did what any foolish child would do. I switched sides and used my left hand instead, again, ignoring the symptoms. I thought maybe I was just tired.
Later that day, I went with my mom and her boss to lunch and they noticed something different about me. I was slouching and slurring my words, like I was "drunk". My mom asked me if I had over medicated myself, but she knew that was not true as she kept my strong medication with her. My mom called my sister who then had an appointment made for me with the doctor later that day.
My concentration and my lack of functionality caused me to go home early. I drove (scary huh) to meet my mom and dad at the freeway exit, about 5 miles from my job. I look back on that and think, how foolish!
By the time we got to the doc office, I had taken a turn for the worse. I couldn't talk, and I couldn't control my right arm and it was all I could do to keep it from flailing. In the waiting room I was trying to read a book and started to cry. I couldn't turn the pages.
The doctor I saw was not my own. So she asked my mom if I was "developmentally challenged". I cried even harder. She asked me to have an x-ray taken of my hand. This was a horrible experience. I could not keep my hand still, how was I going to take an x-ray! The technician was loosing his patients after the 5th time around and I was being exposed to far too much radiation. We finally got on that was good enough and were sent home. This doctor told us I would be fine.
I wasn't fine. I went back to my doctor the next day worse then the day before. I am thankful that my mother is so aggressive with my health care. I had worsened over night and now both arms were uncontrollable and I still couldn't talk. My doctor stepped into the room, took one look at me and left to call a Neurologist. She knew that quick that there was something wrong. The Neurologist came in and examined me. He said I had "vasculitus" which was the swelling of the small veins in the brain, and he gave me a steroid (prednisone) regiment to follow for five days.
By the end of the fifth day I wasn't any better, in fact it was worse. Now, I could not walk very well. Finally, I fell and couldn't get myself back up, this is when my parents had had enough.
This is where things get a bit hard to remember. During this time at home and over the next month or so I don't remember much, so most of this I have read in my journals or people have told me.
I spent five days at the local hospital and nothing they did helped. They were going to let me go. They didn't know what was wrong with me. My mother had enough, she yelled at anyone who would listen and she got me transferred to a hospital in South Sacramento with U.C Davis studies.
There was a team of five doctors waiting for me to arrive. I got there at 3:00 p.m. by about 5:00p.m they had a diagnosis and a prognosis. Without them, I would not be here today.
I had stopped moving, I couldn't do anything for my self anymore. It turns out I had Lupus Cerebritis combined with Antiphospholipid Antibody Syndrome (APS). Roughly translated, my blood is too think and clotted in my brain.
Lupus most commonly attacks the kidneys. Leave it to me to get the one no one knows how to deal with. They did a full blood wash called plasmapharesis. This procedure was done three times. It was explained to me like this, it is like washing your clothes, it takes more than one rinse to get all the soap out. I was also given one gram of steroids for three days and lots of other medications.
It was tough on everyone. I had to be fed, bathed, changed, and my mom was literally carrying me to bathroom so I would not feel that all my independence was lost. The steroids made me the meanest person you would ever meet. I was paranoid and the smallest things would set off a mood swing. I did not sleep for any extended period of time. I refused to take my medicine, and because I was over 18, they had to listen to me. I was seen by the Psychologist at my parents'request. The Psychologist declared me to be under "medication induced psychosis", and my parents were granted medical power of attorney. I am very glad they did this. I don�t feel I was in the right mind to make medical decisions for myself
After almost a month, I was transferred to a rehabilitation center in Vallejo. The normal stay is 13 days, I was out in 5. I learned how to walk, read, eat on my own and dress. Even got some computer time in, though I did not know where to go once I was on it. It was the hardest time in my life. My parents would leave everyday for about an hour, and I can remember staring at the clock waiting. "We will be back when the little hand is on the three, ok?" I would watch and wait.
You never truly know how much you need something until it is taken away. The smallest things like, "you dropped your straw", normally you would pick it up, I looked at my mom. I thank god everyday for giving my family and I the strength to endure. A special thank you goes to my mom and dad. They spent every wakening moment with me in the hospital. THANK YOU! I love you.
I had to wait until almost a year before I could apply to drive again, but I am proud to say, I have that privilege now. I don't try to remember what happened during those months, and I don't think I want to. I am just glad that I have the opportunity to share some of my knowledge with people. If you are young (or even older) and you have Lupus, I am a person who can truly say "I know what you are going through".
I take coumadin now for my APS and I will be on that for the rest of my life. I don't mind, I like to think of it as a vitamin. It's just something that helps me out. I have blood test done every week to two weeks to test my INR level. Coumadin is very touchy and is countered by many things.
My Lupus SLE has been in remission for over 2 years now. It is the greatest feeling! To wake up and be able to jump out of bed, and to do the things I love to do. I am still very careful and watch what I do in life.
I never thought I would be able to go back to school, but I am on my way to becoming a Registered Dental Assistant (RDA). I still do not remember some people and places but sometimes all I need is to have my memory jogged. And I am currently trying to master the art of telling time.
I was truly born at 19. My life has changed so much and I never want to go back to the old one. I have a boyfriend who loves me and will stick by me through thick and thin, which I never thought would happen. My family and friends are all on my side and life is good. I am growing up and I do not want to stop.
Life is not always measured by the number of breaths you take,
but by the moments that take your breath away!