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.

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

07/13/2008 08:07:43

http://www.couldihavelupus.gov/community.cfm?&action=viewPost&postid=85

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 18^th 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

Facebook: http://profile.to/christinatran/

Continued from 4am.

1. Health Update

Prednisone - Love it or hate it, I need it. To quote Rick James, “…it’s a hell of a drug!”

My rheumatologist put me on 60mgs of prednisone after my latest flare.  I’ve had a higher doses earlier in my diagnosis nearly 9 years ago, but I’ve also had much less — like zero mgs when the lupus was controlled and stable!

Tears welled up in my eyes as he wrote out the prescription.  This wasn’t good. This meant my lupus active. Active enough to prompt daily doses of an immuno-suppressant  and that square one was on the horizon and back in sight.

Although I knew what this steroid would do for me, I was more concerned about what it would do to me. We’ve danced this dance before.  The bloating, water-retention (moon-faced, buffalo-humped and prego-bellied), ravenous cravings, irritability, acne, bruising, insomnia and depression, just to name a few side effects. But even with all this — it’s better than oh say, passing out, ER visits or just full-on body breakdown so badly it hurts to be laying down, doing absolutely nothing.

“The benefit outweighs the risk,” I was told time and time again by my rheumatologist and internist, along with every other physician that has ever prescribed me anything for my lupus. Strangely enough, this has become my mantra on those days (that are certainly unwelcomed and should come few and far between) I have to struggle to get out of bed just to down some more pills to keep me a functioning part of society.

Now, does it really outweigh the risks? Let me tell you…

{Bitching ahead, proceed with caution}

I started on 60mgs on August 30. 5 days later I had gained 8 pounds. At this point, I noticed it would take me another helping to get me to feel full for my meals, although what I ate didn’t change, the amount I did slightly. Another week passes and I’m at plus 8, total of 16 pounds 2 weeks into it. This was not good. Clothes began feeling tight and the moon-face was starting to develop. Give it another 2 weeks and I’m now a good 25 pounds since August 30.

During the third week I was feeling much better and had called my doctor to tell him the great news, but more to beg him to let me reduce the 60mgs to something that would also decrease my bipolar-like mood swings and insatiable appetite. He agreed and I was on 45mgs and then 30mgs a week later.

By now, I’ve had to buy new clothes, a good 4 sizes bigger and what little self-esteem I had to begin with was shot to hell. I was irritable, sad, angry but most of all disappointed.

Like it or not, lupus chose me. This is a treatable and most of the time tolerable disease. It’s just when I overextend myself, stretched too thinly among the things I juggle day in and day out and without proper decompression and management of the stress that lead to these flares.

It’s this that disappoints me — I know I should be taking better care of myself. Stop smoking, eat healthier, keep hydrated, exercise, leave work at work, take time for myself, but most of all ENJOY LIFE! But even when I relapse into yet another flare, all I can think of (shameful to admit) is “how much weight am I going to gain this time?!” instead of “I’m grateful for the chance at recovery…”

2. Money Matters

Four letter words: Save, Debt, Plan and Rest.

What more can I say? We have every intention to save money and not rack up debt (and a wedding to plan/save for too btw), however this is much easier said than done. It’s frustrating and almost defeating to save anything when we’ve already cut back what we can. I’m sure there’s more opportunities where we could do-without, but we’ve been so accustomed to this life already anything less wouldn’t be us.

He’s got a compulsive dvd purchasing habit when they’re still in 10+ at home in their plastic wrapping, my 10+ magazine subscriptions, our consumption of water in single bottles instead of gallon jugs, his sugar-free Red Bull addiction, my monthly massage membership, our outrageous electricity bills at $200/mth, AND our $$$$ grocery trips 2-4 times a week! We’ve got enough food to last us through the winter in our cupboards and fridge!

It’s troubling that I can’t have a moments rest when my mind is spinning at 100mph about random things. I really wish I could just turn my mind off with a flip of a switch, but things aren’t that easy. Rest is something I know I need to indulge in, but I simply can’t when there’s to much to do, see, read, research, blog, buy, etc…

3. Social Happenings

The Carnegie Club with Sinatra Saturdays! Can’t get much better than this!

This is a great venue, neatly tucked away from the hustle and bustle of the streets yet opened up to a 2-story cigar bar as we entered. We would’ve never known about this place even if we passed by it everyday.

Dark, smoky, intimate and sultry is how I’d describe it. Very relaxing and upscale, but not pretentious. Low lighting, classy waitresses and soft, deep red, velvet seating to complete the look.

I was very happy to meet some of his other co-workers, one of which was celebrating his 29th birthday. I would’ve posted some pics, however in the current state I’m in I’ll spare you the moon-face and the forced smiles. We must and will go back soon.

4. Latest addictions

I guess when you quit (in progress) one vice, you pick up another.  But at least the habits I’m switching out are for the better and easier on the pocketbook!

Goodreads swap and Bud’s beef jerky — inexpensive pre-owned/read books (pay for shipping only) and salted, dehydrated meat from Iowa. Anyone that knows me would be shocked at these admissions. Me and second-hand don’t go, but that was then and living paycheck to paycheck has made me see the error (and prissy preferences) of my ways.

5. New Beginnings

Still cutting down on the caffeine and tapering down my smokes to just 5 a day! I think I’m on my way to nicotine-free by December 31, 2010! This habit needs to get kicked. If not for health reasons, then definitely for monetary reasons! $7/pack in NJ and $13/pack in NY?! I’ve got a wedding to panic/plan/pay for!

Also, probably joining the droves of job-seekers after NBCU contract expires at the end of the year. Gawd help me…

In trying to positively deal with my stress, expectations and worries about money, career, LIFE in general, I decided I should seek out other “20 somethings” that have or are going through these frustrating times as well. Thank goodness I found some books that we’re exactly what I was looking for!

I’m reading 20 Something Manifesto by Christine Hassler and am about half way through it. It’s a relief to know that I am not alone in this journey and there are others out there that don’t have life’s answers either. But it’s ok! We’re not supposed to and although,  save and debt are four letter words, unfortunately they’re apart of everyone’s life at some point in time. It’s how you manage and handle the stress that’s important.

Meditation has helped, only when I do it of course. I try to sit still every night before bed to relax my mind and get it use to shutting down as I drift off into slumberland. It’s truly amazing how difficult it is to do nothing…

So it’s after 4am and I’m sitting in the dark with Pepper at my feet, blogging on my phone in my kitchen.

Let me preface that brevity (sort of) is key in this blog. Although most of my blogs are fairly lengthy in nature — at 4am, really? I should be stillinbed(.com) snoozing! So please excuse this (somewhat) laconic entry (possibly littered with formatting issues), I will detail more when I’m not writing on my phone and after I have my coffee (decaf now for 2+ weeks!).

1. Health Update
I had a my first flare in NJ several weeks ago. 103 temp and total body breakdown — joints, muscles, head, face, you name it. Prednisone, my familiar frienemy! Second first, allergies to ragweed — Claritin my savior!

2. Money Matters
Budgeting is easy until I try to start and try to stick with it. Wedding fund — what’s that? Um, no more new credit cards? Devastatingly evil and yet so difficult to resist!

3. Social Happenings
Some new fb friend adds and a couple unique outings in NY highlights.

4. Latest addictions
Goodreads swap and beef jerky.

5. New Beginnings
Maintaing caffeine-free and (fingers-crossed) nicotine-free by December of 2010. Also, probably joining the droves of job-seekers after NBCU contract expires at the end of the year.

Good for now. Until the sunrise…