It’s about that time of year again nearly 9 years ago when the Lupus symptoms were at their worst. This was a blog post that I had written a few years ago detailing my symptoms and struggles then finally diagnosis with the disease. From, what I remember, this was actually the same post that got me the audition for the Could I have Lupus campaign.
From Soup to Nuts
So it was only a few days ago that I got the info about participating in this blog, to find out that I only have a day before the deadline of the 14th to complete my entries. I’ll try my best to be detailed yet concise, kind of a contradiction – kind of like Lupus.
But before I dive into my symptoms, misdiagnosis, and eventual battle with Lupus I’ll get a bit of background on me first.
I’m 24 years old and have lived in Southern California when my parentes and I moved from Milwaukee, WI when I was 2 years old. Since grade school, I was always an outgoing and happy kid. I had plenty of friends that I would ride bikes with after school, study with for exams, and hang out with during the summertime. We’d eventually go on to junior high, then high school, but managed to reconnect as if no time had past.
I was a great student throughout school, both in extra curricular activities and academically. I was very much involved in school activities. From junior high through high school, I was involved in girls’ volleyball, Spanish club, yearbook staff member, vocal ensemble, orchestra, Key club, talent shows, and our high school philanthropic club, Argos (school mascot) Against AIDS and Cancer.
But as was most teenagers, I began to slack off my senior year of high school. I guess it was a normal regression at the time for kids my age to care less about school. “Can’t wait to be done with school! No more 0 period classes, gross lunches, or parents dropping or picking me up from school!”
I had already taken my SAT tests, applied to colleges and was ready to coast for the last year of my high school career. Senior year started and I was excited and apprehensive. My boyfriend Daniel and I have been dating since sophomore year. He was a great guy, but had other ambitions that were not similar to mine after high school. We’d disagree then fight. All this began around the same time my symptoms first appeared.
The achy knuckles, shoulders and knees were mostly bearable, but very uncomfortable. There would be some days I couldn’t get out of bed and my parents attributed that to laziness or staying up too late the night before. They didn’t know or realize that fatigue was hitting me hard. I would be late for school or work other days because when I would eventually get out of bed, it would be a struggle for me to get my clothes without the help of my mom because of the painful joints.
I couldn’t take it anymore and didn’t understand what was happening. I tried remedying it myself by sleeping earlier, eating healthier and attempted to live a less stressful life. I’d take time out of each day to reflect and meditate. Daniel and I eventually broke up because we felt that the stress we were causing each might be a factor in my declining health. But nothing worked. I finally went to the doctor to check out these symptoms after my hair began falling out in clumps.
The achy joints were uncomfortable, the fatigue was manageable, but that hair loss scared me and was serious enough for my parents to take me seriously and realize that I was just being lazy all this time. There was something wrong and we were going to learn it the hard way.
We’d go to different doctors that basically all said the same thing, “Its stress.” They said stress causes your body to react differently and that’s the reason for the symptoms.
It wasn’t too much longer after we sought the advice of the doctors that I began to lose weight rapidly. I wasn’t able to keep any food in my body. With in a month’s time I had lost 35 lbs. I remember it vividly. My mom had to take in my winter formal dress because I had lost so much weight, she had to replace the lace up back with hooks otherwise the dress would slip right off my now tiny frame.
“Are you taking diet pills or drugs? Tell me the truth,” my parents would ask me. It was heartbreaking because they weren’t sure if something had changed in my happy life to make start using drugs. I assured them I wasn’t doing any drugs and that I was just as scared as they were about what was going on with my body.
My doctors were no help. Gave me prescriptions that were supposed to relax my muscles and stress balls to work out my achy joints. But that was about it.
June 2001 was my garduation. Summer came and went. The symptoms never ceased. I guess I just learned to live with them.
It was Fall now and I began my first semester at Cal State Fullerton. It was an exciting time. Drove myself to school, choose my own classes and times, no assigned classroom seating – so much independence! It was those little things in life that made me happy.
It was December now and this month would be a milestone month for me. It would be my 18th birthday and I was rounding out my finals for school. The symptoms were still lingering, but I guess I had enough going on in my life not to focus too much on the joints and fatigue.
It’s January and a visit to the emergency room showed I had severe pneumonia. It was winter and I was work late nights at a local bookstore along with studying late for finals. That combination with my prior symptoms was too much for me to handle.
I had a 105 degree temp which prompted the doctors to keep a close eye on me. The nurses and staff weren’t able to tell my parents what to expect from here except that I’d be kept in the hospital for observation since the pneumonia medicine was given to me high doses to alleviate the fever and coughing.
Everything from here is what my mom told had happened.
My parents had left for the night and promised to be back tomorrow morning. I had slipped into a coma later that night and wasn’t discovered until the next morning when a nurse had tried to wake me to draw blood. My parents arrived and thought I was still sleeping as well. The nurse came back and asked it I was a heavy sleeper and if they could wake me up so she could draw blood for tests. My mom had tried to wake me up, but soon noticed there was something wrong.
Apparently I had a stroke and slipped into a coma the night before. I finally woke up the next day to find the right side of my body completely paralyzed. My arm, my leg, my face – nothing was working.
With my parents hope, the help of the hospital staff and my courage to overcome – I slowly relearned to walk, talk, write, feed myself, and use my motor skills again.
It was Lupus, this disease I never heard of before. Was it contagious? Was it hereditary? How did I get it? I was just as confused as my parents but we listened intently to the doctors explanations and suggestions for a healthy normal life.
I was finally well enough to be released from the hospital with the doctor’s blessings.
It was only a month later I had my second stroke. This time it was more damaging and my motor functions I had just relearned were gone once again. Luckily the stroke affected the same area of my brain, instead of another area that would have debilitated another area of my body.
This time is was more serious. My mom quit her job to help me with physical therapy and watch over me once I was released from the hospital. I had to cancel my second semester of classes and would be taking off school for the rest of the year.
I felt bad for my mom, trying to stay strong for me. I knew inside she felt a sense of guilt, even though there really wasn’t anything she could do to prevent this. I guess she felt that all she could do now was to help me through this tough time and only empathize with me along the way. My dad tried to be strong too, but it was just as difficult for him seeing his only daughter go through something so heartbreaking especially at the beginning of her adult life.
Today, my 18-pills-a-day days, weekly MRIs, CAT Scans, blood tests, hospital stays are over for now. I’ve been stable and I’ve recovered from my strokes and regained about 95% use of the affected areas. I currently take multivitamins after stopping Plaquenil about 3 months ago.
It has been 6 ½ years since my diagnosis. New friends I make would never guess I had 2 strokes or even know about my condition and what I’ve gone through until I tell them. But I make an effort creating awareness about Lupus and how much it has affected my life in positive and negative ways. This experience has taught me and made me realize how strong I am. That my parents determination to help me through this is a unconditional love that comes from deep inside their hearts. I’ve had my ups and my downs, but I’m a fighter that will keep fighting until there’s a cure.
I look forward to the future and can’t wait to see whats in store for me. I’ll continue spreading the word, if not to one day find a cure, at least give solace to those recently diagnosed and are unaware of this elusive disease. Please view my other links to get to know me better! Thanks!
Philanthropic organization: http://themissdeeds.com/missmoxie.aspx