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 found a hobby and it’s a pretty time consuming one. But one that at least let’s me be creative and create lupus awareness all at the same time! I know I should’ve have done this a long time ago, but I guess it just wasn’t right yet, until now.
I’ve been quite busy with this new project and am sincerely happy that I’ve got supporters and subscribers.
This channel is dedicate to describing my 9.5 year journey with lupus — from unknown symptoms, diagnosis to stability.
Also, just for fun, some videos will be about the going-ons in my life and how to keep busy while unemployed. However, the focus of the channel is mainly to retell my experiences with this disease.
In 2 weeks, I have uploaded 5 videos — 3 of which detail my struggles with lupus, from beginning until now.
I’m newly inspired to share my stories with the youtube public. I’ve got a list of episode ideas lined up and am excited to film these brief glimpses of my life. Ideally, I’d like to put up 2 videos a week — 1 lupus focused and another fun focused.
There will be at least 1 new video every week, I promise.
As Lupus patients know, alopecia or hair loss is a common symptom. It comes and goes with flares. Losing my hair was actually one of the first symptoms I had before I was diagnosed.
Back in high school (a good 10 years ago!), I’d notice my hair would fall out more often than the “normal” 50-100 strands a day and began to get concerned. So much so I brought it up to my doctor who then told me there was nothing to worry about and that I should stop stressing. This would reduce my hair loss and regrow it in no time!
Well, amid the garden-variety high school teenage angst and drama I was able to breathe a sigh of relief when my hair did, in fact begin to grow back. Did I change anything about my life to speed it along? Nope. I figured it was just a fluke and that was it. Until other key lupus symptoms started up, but that’s another blog post!
This post is about my current struggle with lupus: alopecia! Around the same time last year, I noticed my hair began falling out again. It was noticeable, but could easily be hair sprayed in place to hide the thinning areas. After a couple months of using Nioxin as my mom had suggested, baby hairs began growing. By early October my hair was a few different lengths — my regular hair (about 14 inches) and the newly growing hair (about 3 inches).
Everything was good until April of this year rolled around. The same spots that suffered hair loss last year were thinning out again! I figured it was stress that was the culprit! Living in Jersey with no job and no friends was really exacerbating my depression, too. Of course, because I had danced this dance before, I knew what to do. I switched out my regular shampoo and conditioner for Nioxin and tried my hardest to keep a calm attitude about the ups and downs of my current situation. No too long after, baby hairs grew in — but even more hair began falling out! The Nioxin and my scalp couldn’t keep up with the hair loss!
I had read that triamcinolone shots directly into the scalp helped reduce hair loss and encouraged hair regrowth. Since I had a healthy supply of triamcinolone cream from last year’s winter hands, I began slathering the steroid cream on my scalp in hopes of having the same effect as the shot would.
Currently my routine is to wash my hair every other day with the Nioxin system 2, use the scalp treatment and on days I don’t wash my hair, apply the triamcinolone cream directly to the scalp.
Below are pictures of my head, left side, right side, an increasing part and finally the way I style it to cover the spots. I put all my hair up in a bun and use a hair clamp these awesome black hair combs to pull my longer side burns up to cover the bald spots.
It’s too early to tell, but we’ll see how this all works out…
Who would’ve guessed full-on breaking down in a crying fit about not having laundry done earlier this week would perk me up thus far? And because of that episode, I had a wonderfully productive couple of days! It felt so nice to regain some normalcy in my life, even just doing the most mundane things! I woke up Tuesday morning early enough to have coffee ready for Jeff as I saw him out the door to work with a hug and a kiss. This was a daily ritual that has been neglected since my bout to depression hit hard a few weeks ago. Some things most would consider the daily grind, felt simply incredible to me. A much welcomed change.
Let me explain.
I’ve been fighting depression for gawd knows how long. It had always been managable with medication and small pick me ups, like seeing old friends, dinner at my favorite restaurant, or being plesantly surprised that I lost a couple pounds without even trying! It’s these simple things would keep my world in balance. But all that changed earlier this year.
My contract position at NBC ended at the beginning of the year. I knew I would have to look for another job. Staying home for a couple weeks was a nice change from working a full-time job. But when a couple weeks turned into a month and that turned into two months, it started to drive me crazy.
Before the crying fit, the depression would render me completely useless, a shell of a person. Jeff would leave for work and I would hold my post in bed until he came home. Feeling both anxiously overwhelmed and completely unmotivated. Throwing pity parties and hating myself for being unproductive. I felt completely paralyzed. Things had to change.
I saw a psychiatrist in February when the depression began to affect both our lives. She prescribed some meds that really didn’t do much for me. The results were negligible and I promptly returned to my regular routine after tapering off.
Depression loomed for another few weeks and then the turning point hit. I broke down and cried my eyes out in Jeff’s arms. He assured me everything would be ok and that I had nothing to be sad about. Hearing rationale from an outside onlooker instead of my own inner voice gave me clarity. So I guess sometimes it takes breaking down to cheer up.
I couldn’t wait to get back to the warmth and safety of my bed after getting up to see the doctor this morning. I’ve been feeling under the weather for the past few weeks now and have found an uncomfortable comfort staying in bed all day, wrapped up in my blankets and nodding off.
Uncomfortable because I know I should should be out and about staying active. But, I feel so tired all the time, no matter how much I sleep the night before. This sluggish feeling has overtaken my days. This insatiable need to rest has really gotten me demotivated to do anything else. I find it a chore to get up and it seems like the only reason I do is to take my meds then it’s back to bed.
I don’t feel like the person I was before and this worries me. Doctor’s suggestion? Double up on meds and painkillers for sinus headache. We’ll see how this goes.
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.
I’m in a funk, a slump. I can’t shake this feeling that’s been taking over me for weeks now. Obviously, it has something to do with me being currently unemployed. It’s got to be, right? I hope so. Nothing to do, nothing to wake up for. I’m allowed to sleep in all day/afternoon — great right? Not for usually productive me! This has been torture!
My daily routine for the past 3 weeks can be summed up as waking up, reading (paragraphs if that and not books or even pages), cleaning and sleeping. Throw in applying for jobs, updating my facebook status and tweeting and there you have it.
It’s too cold to go outside for a walk or enjoy the outdoors. Even getting necessities like food and water are a chore when it’s 9°F outside. Plus, no job = no $ = no disposable income = no retail therapy. Sigh.
“Bored” does not even come close to how I feel during the hours of 9am-6pm (when Jeff’s at work). I’ve lost interest in watching tv, cooking and wedding planning, etc. All of these things I used to enjoy now seem more like a hassle. I sit in bed and get caught up in just…being here.
My thoughts are a mile a minute, but there’s nothing specifically I think about. I’ll start a magazine or a book then put it down a few pages into it. My short attention span’s been getting the best of me. My mind’s energized yet my body’s fatigued, I’m motivated yet unmotivated at the same time— its a such a difficult thing to accurately describe. All I know is this feeling’s not welcomed anymore.
I’ve tried to work it out using the elliptical machine, practicing yoga and meditating — nothing’s worked. I think I’m suffering from the “winter blahs,” aka Seasonal Affective Disorder (SAD).
It’s only moving to the east coast that I’ve truly experienced different seasons of the year. Growing up in southern California it’s sunny year round so even if I was predisposed to SAD, it wouldn’t affect me because of the minimal differences between the seasons.
I don’t remember feeling this down last year, but there are many reasons for that. Starting with the fact that it was my first white winter, excited? Oh yeah! Second, I was coming off of the high I was experiencing of moving cross-country with Jeff. Third, new place so many things to see and do! And so on. I was perpetually distracted so much so the winter blues had no effect on me. But I guess this year’s different.
At the beginning of every year I make resolutions that I no doubt break within a few weeks. Without fail, my goals for the new year dissolve as my will power decreases. I start off strong. I buy a special journal to track my progress. I purchase healthy recipe cook books. I accumulate all these neat toys (weights, dvds, exercise bands, yoga cds) making sure I’ll stick to it this year and finally finishing something I started. I have every intention to better my life by making changes for good. You’d think that by accomplishing these new years goals and the benefits I’ll reap should be enough to motivate me, but sadly, each year prior it hasn’t.
Most of my resolutions are your typical run of the mill: lose weight, lead a healthy life style (physically and emotionally) save money, keep in touch with friends and family, etc. But this year I’m getting a little more specific.
Through reading about mindful meditation, I’ve learned to have a happy life, I needed to look inward. For too long I cared too much about how I was perceived by others. I used to compare myself to my family/friends/acquaintances and due of my low self esteem, I almost always didn’t come close to measuring up.
Meditations and affirmations have taught me that life is not a race to be won. Life should be about living and enjoying all there is to the fullest! Now with that said this year will be the year I will truly live my life.
Resolution 1: Take charge of my health.
Being both physically and emotionally stable have always been at the top of my to-do lists. It was only these past few months that I began taking it seriously. For the physical component, I intend to exercise weekly, if not daily. 45mins out of my day is a small price to pay for healthy heart, lungs and mindset in return. Also, I want to bounce back to my slender self after being on high doses of prednisone, which caused bloat, moon-face and a 4 pant size upgrade — seriously!
Along with exercise, I will be more aware of what I consume. A healthy diet can be mood-altering for the positive as well as contribute to the energy I’ll need for the exercise component. I resolve to cut down on sugar (this includes glucose found in breads and pasta), caffeine and nicotine. Sweets are treats, decaf coffee isn’t so bad and well, nicotine patches will have to do for now until I’m no longer dependent on it.
The emotional aspect ties in with the physical when I practice my daily yoga session. It’s amazing how quickly your frame of mind changes with you breathe deeply and mindfully. I’m able to focus on relaxing and not my never-ending to-do lists. Again, only a few minutes a day will (and has) helped me align and center myself for better mental well-being.
Specifically, my action plan for accomplishing this resolution is to practice yoga sun salutations in the morning, workout on our elliptical machine for at least 45mins a day in the afternoon and meditate nightly.
Resolution 2: Save, spend less and detox.
Hands down this has been the most difficult resolution in past years to stick to. I used to think that coupons and discounts were my friends until I realized had these “deals” not made their way to my inbox or mailbox, I wouldn’t be making unnecessary purchases in order to take advantage of the “savings.” I’d find myself scouring online sites and in-stores for something I didn’t need just to use the coupon! What a horrible way to save money! It made no sense and because of this behavior, I’ve got credit card debt — again.
I’m going to tackle this resolution this year by making only necessary purchases. Especially since I’m in between jobs aka unemployed and without income. When I eventually re-enter the workforce, I’m committing myself to the 10% rule. Basically 10% of my paychecks will go directly into my savings account, no ifs and or buts! In retrospect (20/20, remember?) I should have done this a long time ago…
Also, no more buying in bulk (because more often than not I end up paying more for what I think is the “better” deal), jump in my car or online to buy something I don’t need just because a coupon is about to expire. Spending money on clothes would be only on an as needed basis since I already own 30+ pairs of pants and countless tops. Also, accessories count towards this material checklist. I own too many purses (yes, I actually admitted to it) and over 70 pairs of shoes! Who needs that many pairs of shoes?! Apparently, I thought I did.
Which brings me to my third subtopic under this resolution — material detox.
Let me give you some more back ground on this. I’ve recently gone on this kick of “being more with less.” My reasoning behind it is simple: Clutter-free space, clutter-free mind. I have too much stuff already and I was continuing to accumulate more everyday. This had to stop!
“… about simplifying your life and really living. Here, you can learn how to create a life with more savings and less no debt, more health and less stress, more time and less stuff, and more joy with less obligation.”
Project 333: The Basics
When: January 1 – March 31, 2011
What: 33 items – clothing, accessories, jewelry, outerwear and shoes.
What not: these items are not counted as part of the 33 items – wedding ring or other sentimental piece of jewelry that you never take off, underwear, sleep wear, in-home lounge wear, and workout clothing.
How: Choose your 33 items, box up the remainder of your fashion statement, seal it with tape and put it out of site.
What else: consider that you are creating a wardrobe that you can live, work and play in for three months. Remember that this is not a project in suffering.
Resolution 3: Keep in touch.
Friends and acquaintances have entered (and some exited) my life for different reasons. Sometimes for the good and sometimes for the better! It’s not only having friends, its maintaining the relationship aspect behind every good friendship that is important to me. I want to stay in touch with my friends on the west coast, especially since I’m 2,441 miles away and without any new friends here. Facebook has taken the place of the intimate and heartfelt correspondence you’d only get through a handwritten letter or card and sometimes a small surprise of a letter in the mail from a friend can make my week! However, with the prevalence of high-speed, micro- communication, its either facebook or texting nowadays. This year I resolve to keep open and thoughtful communication with friends and relatives whom I only occasionally converse with.
Not quite sure if this is true for this year or for any of the previous years for that matter. But I do know that I’ve experienced plenty of “firsts” this last year before turning the big two-seven. 2009 was 365 eventful days, to say the least.
Life
We celebrated our 1 year engagement anniversary. Still planning and saving for that fall 2011 wedding, fingers crossed!!! Things are still going strong and I really can’t complain! Strangely enough, had our first movie date out in this past year, too. Of all things, we saw Dinner with Schmucks. LOL!
Also, we renewed our lease until next November. Apartment hunting during this time was out of the question and my stress level was already at its peak. We really can’t complain about Brookchester, well, except for the hooligans puking their brains outside our office window and the inconsiderate laundry machine hog that drives her 8 loads to our nearest facility, leaving none for anyone else to use. I thought I had her schedule figured out, but she threw us a curve ball last Friday. But that’s for any other post. Another thing, still no doggies allowed. Which means another year with out the unconditional, excitable love only a dog can give. Don’t get me wrong, Pepper’s alrite… when she wants to be!
Career
Began contract work at NBC in July and sadly, this position will cease in 2 weeks. Learned quite a bit about the industry and what a powerhouse NBC really is. Although this specific position is not where I want to being my career, NBC would have been a perfect starting out company for my HR goals. But who knows, something might open up and maybe I’ll get my chance to get my foot in the door of the HR department here. Their company culture definitely made me reminisce of MRM days which had a younger workforce striving to please . Ordering take out into the late-night work hours and finally leaving the office, only to see each other again to brainstorm in a few hours.
Well, not sure where I’ll land next, but where ever it is, ideally it will be stable and a keeper. I hope it’ll be permanent and have health benefits, too! Some more fingers-crossed!
Health
A trip to CA, a trip to hospital. Totally exhausted myself trying to visit with all my friends and family. Apparently I had a vitamin K deficiency. Who knew? So some supplements and bananas every morning. But all in all, it was a much needed, worthwhile trip. However, shortly after coming back to the east coast, even after the banana breakfasts, I still felt fatigued and everything hurt. Of course, I brushed it off as the excited good stress from landing the NBC position. Yeah, not so much. It was another flare! 103 temp and nearly an ER visit. Then back on prednisone again. SIGH! 60mgs and yesterday started 2.5mg for my last 2 weeks.
Let me start with the pros of prednisone:
Less fatigued
Reduced pain
Halted alopecia
Regained my appetite for food
Reduced flares
And true to form, there are the cons:
Moon-face
Bloating
Irritability
Gained 30 pounds
Wearing 4 pants sizes larger
This too, shall pass…
Loss
My baby girl. My min pin passed away this year. She was 14 years old. Titi definitely had a good run. Mom to 12 baby pups and actually outlived a few of them. I just wish I could have been there with her in her last days. But my parents were and I knew they took just as good of care for her final hours as they have for the last year I’ve been on the east coast. She will be dearly missed.
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.
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!
September 21, 2011
gooddeeddoer
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Strangely enough, had our first movie date out in this past year, too. Of all things, we saw Dinner with Schmucks. LOL!
