It’s the annual New Jersey Walk for Lupus Now event and I’m super excited that I’ve reached my second fundraising goal with a month to spare! I’ve since increased my goal to $500 and hope I can exceed this goal by walk day on 10/23/11.
Please help support me and the Lupus Foundation of America find a cure! Any and all donations are greatly appreciated.
I stumbled across teacherwishlist.com while searching online for nearby volunteer opportunities a couple weeks ago. It was an interesting concept. Teachers upload a wishlist of classroom supplies for their students, parents or donors purchase the items to donate to the classrooms. Pretty simple.
Although I am not a parent, (pet-parents count too though!) I decided to check out the lists around me to see if I could help out with their needs. Once I entered my zip code, a search populated 10 schools within my area. I was somewhat surprised to only find 2 teachers, both from the same school, utilizing this site!
From their about page: In a recent survey of elementary and middle-school teachers, 71% reported spending an average of $462 per year out of their own pocket on classroom supplies and learning tools.* Teacher Wish List was created to thank teachers for their generosity. (How many other jobs require employees to pay for supplies?) This service makes it even easier for parents to continue to help teachers.
I guess most teachers aren’t aware that this site exists or maybe they feel a little strange asking for donations. I know some teachers send home a list of supplies that are needed for each student, so the responsibility then is on the parents to purchase the items. I see parents and kids roaming the aisles of Target and other local “everything” stores for their Back to School supplies, lists in hand!
The supplies that were on the lists I looked at on the site were for Preschool and Kindergarten classes. Tissues, paper towels, stickers, puzzles, etc. These items were specifically for the classroom — for everyone to use. The requested supplies were everyday items that I could pick up at Target and wouldn’t break my budget either. So I decided to help out. I emailed the teachers and let them know that I wanted to donate the items on their individual lists.
I went to 2 stores and found all the items and in total for both teacher’s lists it only cost about $65.
Items from Preschool and Kindergarten class wishlists. This shows only one class. Just double what you see and that's the second class!
Target has this incredible dollar section right at the front entrance of the store. I found these and other age-group specific topics of cards, like geography, math, science, etc. But since I was purchasing for kids 6 and under, I felt these would be best suited for them.
$1 each at Target
Some may recognize these “Play Packs” from my haul video. You’re never too old to color!
"Play Packs" come with crayons, stickers and mini book.
I fondly remember making paper puppets out of white paper bags like these. You just glue a bunch of stuff on it, draw a happy face and then carefully stick your tiny 5 year old hand into it (not to open all the way) and ta-da! A new friend!
Supplies for paper puppets!
Both classes cheered for Silly Bands. I don’t get it, I must be getting old. But I’m glad the kids love them!
Silly Bands...??
The teachers were both very grateful for my donation. We made small talk and I told them I was always interested in teaching, the younger kids especially. Who doesn’t want to play with little kids and color all day?! Have juice and crackers for snack time — omg, a designated snack time?! Yes! I love the order within the chaos and the little smiling face aren’t bad either.
So I’ve only posted 1 entry for July and felt the need to give stillinbed.com the same love I’ve been giving to Good, Bad and Ugly with Lupus.
Upon signing in here today, I noticed there were a bunch of comments on my trypophobia post. It seems like I only managed to reply to 1 of the comments sometime last year. For that, I’m truly sorry. I’ve reply back to the 37 other comments individually and feel a sense of accomplishment and relief in doing so. I hope all is forgiven and those who commented will continue to read my future updates.
New happenings:
I’ve started a personal journal. You know, the kind I write stuff I can’t share with the world. This all of course, in the name of personal growth and self-enlightenment. Keeping this journal has been a goal of mine for a long time, but I just wasn’t disciplined enough to start one and be consistent with it, until now. This was all brought on by a movie I saw over the weekend, Any Human Heart — which originally was a book written by William Boyd with the same title. I fell in love with the story and inspiration was sparked, then putting pen to paper began!
I found time to clean my closet and organize my shoes to donate to the Women’s Rights Information Center, which their “Career Closet” (helps low-income job seekers shop for outfits and accessories) is run by Past & Present Boutique.
Pepper normally chases after the laser pointer light, like most other cats. She’s fine with but not with It’s actually pretty funny to see her happily playing and chasing the first dot, but as soon as I change the laser to the circle, she runs and hides!
Kind Bars. I received one in a BirchBox and fell in love! I was so happy to find them at Target. They’re delicious and nutritious! “Kind’s all natural whole nut & fruit bars put an end to hunger by delivering all-natural nutrients like fiber, protein, calcium and iron.” Perfect for my anti-eating days. A bar and a multivitamin usually do the trick for me!
You can take the girl out of Little Saigon, but you can’t take Little Saigon out of the girl!
I was homesick for delicious Asian dishes like my mom’s home cooking and all that’s familiar to me in Orange County (I’ve lived there since I was 2!). The closest thing we’ve got is run-of-the-mill Chinese take out and a Mitsuwa about 20 minutes away. But getting those authentic Vietnamese dishes were out of the question. So, I decided to cook my own! I made bò lúc lắc (literally “shaking beef” – seared beef with sautéed onions), bánh xèo, (literally “sizzling cake” – crepe entree typically with pork, shrimp and bean sprouts), thịt kho (caramelized, braised pork belly with hard boiled eggs served over rice), and bánh phồng tôm (shrimp/prawn chips flash fried). Sadly, none of the dishes tasted like my mom’s, but Jeff liked it!
Almond milk. I came across this simply because I had a coupon for it and didn’t want to pay full price for the lactose-free milk I normally get. So delicious and good for you too!
The Lupus Foundation of America (LFA) gave me the rare opportunity to publicly share my personal story about Lupus in a national ad campaign in 2009 in hopes of creating awareness and helping others recognize early symptoms. I got word last week the the Lupus PSA Campaign will be renewed again for another year! That’s 3 years running!
Super ecstatic to be apart of such a great cause in 2011! Watch for me on tv and on the radio! However, it looks as though the AdCouncil is no longer overseeing this campaign, but ads and website are still up!
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 parents 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 graduation. 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.
Below is a repost of my initial blog about my involvement with the Lupus Foundation of America’s PSA Campaign, Could I Have Lupus. I was fortunate enough to be involved in this campaign. Please forward this message along — it may save a life.
Lupus is a chronic autoimmune disease that can last for many years. It can be life-threatening and damage any part of the body, including skin, joints or organs. Individuals with the disease can experience a wide range of symptoms, including fatigue, hair loss, painful or swollen joints, fever, skin rashes and kidney problems.
The cause of lupus is unknown. The disease triggers the body’s immune system to mistakenly attack and destroy healthy cells and tissue as if they were viruses, bacteria and other germs. Ninety percent of individuals who have been diagnosed with lupus are women of childbearing age (18-44). It is three times more common among minority women than in Caucasian women. There is no cure for lupus however; it can be managed if detected early. In particular, minority women must be educated about the disease and its symptoms. If they suspect they have lupus, they should then ask their doctors for a medical evaluation.
The new PSAs feature real women who have lupus. They portray women who have symptoms that might be related to lupus but these women have not yet asked their doctors the most important question, Could I have lupus? The PSAs conclude with the tagline, For answers. For support. For hope.
The campaign encourages women to visit Could I Have Lupus Official Site or call toll-free at 1-800-994-9662. By visiting the website or calling this phone number, women can learn more about this disease, its symptoms and local resources they can contact. They can also upload their personal stories, post comments and create a much-needed communal dialogue about lupus.
>It has been over 3 months since my last blog and for that I’m sincerely sorry. I don’t even know if anyone reads any of these, but just for myself, for therapeutic reasons, I should’ve been writing more often. So it resumes…
A lot has happened in these past few months. Let’s start off with the good news! Lupus Diaries I figured the Lupus Diaries
http://lupusdiariesvolunteer.com/ was something where I could contribute a few of my Lupus blogs to just share my experiences with the disease and hopefully, aid someone that was diagnosed in letting them know that they’re not alone and these are a few things to expect throughout the transition. Well, I got a call from the agency that promoted the diaries site sometime in November saying they liked my writing and wanted to know if I’d be interested in sharing my story to others — in a commercial, radio and magazine campaign!
I said sure thing! I’d love to be able to create any awareness possible about Lupus and help shed some much needed light on this disease and its effects on the body. So, the next step was to let work know about this and hopefully ask for their cooperation in allowing me to take time off to participate in this once-in-a-lifetime opportunity. Luckily, my work place felt the same way I did — this was a chance I couldn’t pass up!
Tuesday, November 25 First was the all day commercial shoot. I hung out by the craft service table and had my lipstick re-applied by a makeup artist. I felt pampered and at the risk of sounding lame, special. I was cast as the English speaking “talent” while Yesinia was doing the Spanish speaking parts. When I first met her during the wardrobe fitting the Friday before, I knew she had a light most people don’t possess. She is a very vibrant girl with enthusiasm and brightness I wish I had on my worst days. We filmed different settings and I would’ve never guess the amount of time to shot a :30 sec ad! We’d do a scene over and over and over again. Just to make sure we got the shot. All in all it was a great experience. Met a great group of strong girls and now I can add commercial star to my repertoire!
Monday, December 15
It’s funny, the agency would call and give details of the remaining shoots in pieces. First they weren’t sure of the date or time, then it was the location. I guess thats the just way the industry is. Anyhow, Todd and I get to the recording studio and we’re welcomed very warmly. I was somewhat prepared to do the radio spot, although was not given any prompts or scripts to read. I figured it would be just a one on one interview of sorts. I was hoping to see some of the girls I worked with on the TV ad, but no luck. It actually turned out that only myself and Yesinia would be doing the radio spot.
It took Todd and I about 1 hour to get to the studio from OC. Total time in the studio, ~30 mins. Total time recording, ~ 20 mins.
Tuesday, December 16
I get a frantic call from the agency asking me to get to the studio to do the voice over parts for the commercial and that it needs to be done today! The clients that were funding this project wanted the commercial wrapped up and requested the agency to contact all the girls that participated in the ad last month to come into the studios for an impromptu voice over session. As the recording session the day before, it took no time to wrap.
Thursday, December 18
Photo shoot today! I’ll keep this short and sweet. I felt pampered! Full makeup, hair and food!! I got to see some of the girls from the tv ad and we chatted and updated each other about our going ons. Excited! Shot after shot, frame after frame — total about 200 pics! These were going to be placed in magazines and possibly billboards across LA.
——-
Some butterflies, eating on the run, PTO days and a few trips to LA later – I feel like participating in the Lupus PSA has done me good as I hope it does other good too.
> Apologies for the vanishing act. I’ve been consumed with work among other issues but some how managed to find some time to do good. I’ve been to a couple charity run/walks in the past few weeks.
Make a difference in those lives affected by Lupus. Come out to support the volunteers and runners/walkers who are helping creating awareness about this disease and one day, find a cure.
Time and Place Date: Sunday, October 5, 2008
Time: 7:30am – 10:30am
Location: La Mirada Regional Park – La Mirada, CA
Street: 13701 Adelfa Drive
City/Town: La Mirada, CA
American Heart and Stroke Association
I am twice a stroke survivor. Your participation is vital to our success in raising dollars for heart disease and stroke research and education. Thanks for committing to help in fighting our nation’s No. 1 and No. 3 killers—heart disease and stroke. You are making a difference.
September 21, 2011
gooddeeddoer
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