Living with Chronic Illness: Sometimes I Get Tired

Just wanted to make a disclaimer that this is NOT a motivational Monday Saying.

Aloha,

I hope everyone has had a good weekend. For me, this was the first weekend in one year where I did nothing. And it was awesome. As of October 1st, I quit working in the emergency room 3:30pm - midnight for the last year taking only 3 days off. A schedule like this throws your whole sleep and energy schedule out of whack, especially when you do this 1x/week on top of a traditional 9-5. And this year, I had countless all-nighters studying for two board exams. This has been an exhausting year.

I feel like my body is still catching up on a year's worth of missed sleep. I still feel really tired and out of it all the time.

In the last few weeks, it's been difficult for me to take my medication. I've mentioned this several times in the past, but for all my new readers out there, I have an autoimmune disease called Lupus. It's a disease in which my immune system is attacking the good and bad cells of my body causing me to get sick. Fortunately, my Lupus has been controlled and mild-moderate since my diagnosis in 2010. For more on that history, you can read my My Lupus Story and interestingly how Lupus affected my hair here.

I don't know if it's just that I've been tired lately and catching up on sleep or if I'm just really getting tired of taking multiple vitamins and medication each night. For those who have to take multiple pills for whatever reason can probably relate.

There have been some nights where I am just too lazy to take them. It's a lot to take. On lazy nights, I usually can summon up the energy to at least take my actual Lupus medication. I know that's bad. And hypocritical as I work in the medical field preaching med compliance. Agh. I am only human. 

I was too lazy to arrange my pill bottles "blog-worthy" so here's a sneak peak into my life. I have only one prescribed medication which generically is called Plaquenil. The rest are over the counter but a must take as my Lupus has made me deficient in others areas. The aspirin is for prevention of blood clots. There are two bottles of the same thing as one is almost empty.

I summoned the energy to prepare my daily dose of the night. Just looking at it makes me want to gag. 

I know that may not be much to others who are really suffering out there. 

There are just days when I have bad days. And lately, I have been having bad days in which I hate having to swallow all these pills and the mere thought of having to do so sickens me. Looking at it sickens me. Having to open each bottle and taking one out sickens me. 

Ugh. I know I shouldn't complain. There are others far worse than I am.

I am blessed and as healthy as I could be given my circumstance.

Life is what it is, but you know what, sometimes living with a chronic illness can get tiring too.

Cheers as I am about to take my concoction to keep me going.

Xoxoxo

P.S. Sorry this was a depressing post but I am only human.

Lupus Made My Hair Funky?

Hello everyone!!

I was inspired to do this blog post after looking in the mirror one morning. My alarm clock went off. I snoozed it ;) Eventually got out of bed to get ready for work. 

While brushing my teeth, I looked up to the mirror and saw my hair. Half of it was wavy and the other half was straight. My initial reaction was "what they heck?" and my second was to chuckle. 

For those of you who do not know, I was diagnosed with Lupus, an autoimmune disease, in July 2010. You can read more about my story here. 

One of the side effects of having Lupus is hair fall out. My hair fall out was pretty severe after my diagnosis. It was traumatic and difficult to deal with. You can read that story here. In Fall 2014, my hair started to fall out again. Not as much as it did initially in 2010, but enough to make me feel like this was happening all over again. It lasted for about 3 months and my hair grew back. Then in Fall 2015, it started again. This time less severe than my second experience. What is it about Fall and hair loss? I must admit, I fear the upcoming Fall season due to history repeating itself.

....back to the present, I looked up in the mirror today and saw my hair. Parts of my hair are wavy and other parts are straight.

(Excuse my poor lighting but I just had to take a picture. Impromptu style)

I've noticed this many times before since my hair started growing back. I've told my friends and family about it and we would laugh about it. 

When I looked in the mirror that morning I was reminded of how prominent the difference was. I was reminded of the trauma that I experienced but also the recovery and resurrection from it. And I suppose it adds humor to the seriousness of Lupus and the hair fall out trauma.

BUT DANG!! It totally looks like I half did my hair. LOL

As funky as my hair is after it grew back, I am so grateful and thankful that it did grew back. Hair is important to us females. I had a lot of it before. It was hard to see it fall in clumps.

I have most of my hair back now. It may be half straight and half wavy, but it's still my hair. And it's a reminder that I can still kick Lupus in the butt!

Xoxox

November Grateful Challenge Part 2

Here is part 2 of my November Grateful Challenge! Check out part 1 and why I'm doing this challenge here.

So far, this experience has been a great one! We don't really realize (until we really think about it) how blessed we are. 

Let's get started!

1. EMPLOYMENT. I love what I do and I love my employer. I have been so blessed to have been able to make and keep the friends I have made in all my jobs. My current employer is a wonderful place to be. It definitely feels like a second home. This week we celebrated my office "roomie's" birthday. She received a heart bouquet of flowers from a secret sender ;) We have an inkling of who it may be. The smile on her face was priceless. 

2. MY HEALTH & STEPPING OUT OF MY LUPUS SHELL. My health is not in the greatest shape due to my  diagnosis, but I am thankful that it is at a manageable level. I am living and functioning like any other "normal" person. There are struggles, but there are also triumphs and still a feeling of normalcy. In the 4 years of having Lupus, I finally attended my first (well second if you count a Lupus walk as my first) Lupus fundraiser. It was an event held at the Sofitel Hotel's Riviera 31 Bar & Lounge in Beverly Hills where, oddly enough, my high school prom was held. Ohhh the nostalgia!

The Purple Carpet

Channeling my bae, Queen Bey

3. FRIENDSHIP. I've known this girl since I was 9. Nearly 20 years of friendship! She was my date to the Lupus fundraiser event. We had so much fun looking at all the celebrity lookalikes. Without my glasses, I saw people that looked like Kobe Bryant, Chris Brown (with tats and all!), Common and Nicki Minaj. I was in faux celebrity heaven. My friend's vision is 20/20 so she was quick to burst my celebrity fantasy bubble. Haha. I love this girl!

Lupus Awareness Fundraiser

An unflattering photo of us laughing at something! Makes me smile anyway :)

4. CHILAQUILES. My most favorite Mexican breakfast ever!! I've tried many a places that serve chilaquiles. This is from Casa Chocolate in Arlington Heights in Los Angeles. BEST I'VE EVER HAD (cue Drake's Best I Ever Had)

May you all have a beautiful beautiful weekend <3

<3<3<3

Hair Chop!

Before

So it finally happened! 

GOT MY HAIR CHOPPED, YA'LLS!!

Drum roll please......


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Oh the anticipation!

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After

Cut: Right below the shoulder with layers. 

Sunlight is my filter

This lupus hair fall out wasn't playing! 

I heard that hair short was best for thinning hair. Short hair worked for me four years ago when I was first diagnosed and when my hair fall out was a bajillion times more traumatic.

My experience this time around isn't AS bad but still rough because as I said in my post about my hair falling out again, hair for us females means something to us. It's traumatic to see it fall in abnormal amounts. 

My current hair fall out opens up a whole can of warms. It brings me back to the pain I felt four years ago. It makes me worried about my health (hair fallout tells me my lupus is very much active). So many thoughts, so many emotions, so many worries.

Part of me was really sad to cut my hair. Growing out my hair and keeping it long was my "F*@k you" to lupus. I went from AT LEAST 75% of my hair falling out to about 85% regrowth. Yeah, yeah. Who knows what the actual percentage was... Point is I lost A LOT A LOT of hair BUT I also grew most of it back. Since my hair is naturally a big poof ball, I was able to create illusion of my once redonkulously full hair. 

HAIR EVOLUTION
Once my hair stopped falling out in 2010, I did use BioSil which is a hair, skin and nails regrowth and strengthening supplement. I honestly felt like it worked back then. As for right now? Since my hair is still falling out, I think it is just slowing down the process for now.

The evolution of my hair since it fell out in 2010 (I don't have many pictures from 2010- 2012 when my hair was at it's thinnest. I hated taking pictures!). 

Summer 2013

My hair was stronger and I was finally able to let it grow out without constantly cutting it

May 2014

Poor quality picture, but I wanted to show you how long my hair was

June 2014

My hair was loooooong

July 2014

Hair cut to right below my chest

September 2014

I cut my hair as it was starting to fall out in late August. One day I woke up with hair all over my pillow and I thought Enough! I cut it right above my chest. It continued to fall out more and more and so I chopped it off!

October 2014

Pictures the day I cut my hair

I was really digging the peekaboo brown underneath. Chopping off my hair means chopping off most of my peekaboo. You can still see the peekaboo brown but it's not as in yo face as it would be with my hair long. With sunlight (as in my after picture above), the contrast is more apparent.

No strong sunlight

SHORT HAIR PERKS

- I am using less hair products which makes them last forever! And it saves me money!

- My hair dries so much faster!

- I have less knots (my hair was crazy knotted underneath ALL the time. Rats nest!)

- Style time is cut down by more than 50%

- My hair does not get caught underneath my arm pits or even my car door...WIN

I haven't had my hair this short by choice since 2007 but I suppose change is nice :-) still re-learning how to style it but it's all coming back to me now. And it is quite fun to play around with. 

Just because I cut my hair short, my struggle does not end: Insecurities about hair continued and future fallout, concerns with my health, and feeling like I have "lost" (I know, silly talk!) a mini battle. Despite my crazy talk, I will continue to fight fight fight!

I am a lupus warrior! I am not giving up. 

<3<3<3

The November Grateful Challenge! Part 1

Living the hustle and bustle of life makes it easy to forget our many blessings. We get caught up in life and we do really forget to stop and smell the roses.

I've decided to take part in the November Grateful Challenge! The November Grateful Challenge (or 30 Day Grateful Challenge, whichever or whatever you want to call it) is about taking the time to recognize what you are grateful for each day in November.

I will do weekly compilations instead as they give me an opportunity to really reflect on the past week instead of rushing to post something daily. It's just easier for me. You may choose your own execution! :)

Let's begin! :)

1. Welcome to the world, Baby J. You came two weeks early!  I am so happy you're healthy and that you gave your mom (one of my closest friends from high school) an easy time with the delivery! :) You are immensely loved <3

2. I came across this photo last week on Pinterest. Just looking at this little guy makes me happy. I had dinner  and went shopping with Ben last night and I must say, this is how he makes me feel :) (*Cue the cheesy "awwww"s)

(Original picture source: unknown)

3. This Mickey/Minnie Mouse hooded sweatshirt from Uniqlo. It's just a sweater you may say, but there's so many things about it that make me feel so happy and blessed!

a) It was on sale from $29.90 to $19.90! 

b) Who doesn't love Mickey and Minnie?? 

c) I write a lot about my little nephew. He loves Mickey whom he calls "Baka" (I'm not sure how he got that! LOL). I knew that him seeing me in this sweater would make him oh so happy! A smile and sparkle in his eye are things that warm my heart immensely. 

(Here's a mini sneak peak of my hair chop! Read why I did it here)

What are you are grateful for this week?

<3<3<3

Blame It On The Lupus: Hair Loss

Hair loss.

Just those two words by themselves do not have any positive connotations.

Hair loss.

A symptom of lupus.

Hair loss.

Something I experienced when I was first diagnosed with lupus in 2010.

Hair loss. 

One of the most traumatizing experiences I have ever gone through.

Hair loss.

An ever more reminder that I have lupus and an even bigger reminder that my lupus is active.

This was my hair May 2010, two months before I was diagnosed with lupus. My hair was thick. It was crazy thick. Whenever I got my hair done, my stylists would tell me, "you have such thick hair." Drying my hair took forever because there was just so much of it.

July 2010 was when I was diagnosed with lupus. As you would imagine, my life changed. My body changed. My emotional well-being changed.

One of the most prized possessions of women is hair. Some may call it vain, but it is what it is.

Hair is many things to different women. Hair is feminine. Hair is beauty. Hair is sex appeal. Hair is an avenue for self-expression.

I lost all of that when most of my hair fell out progressively (but rapidly) after my diagnosis. It fell out in clumps in the shower. It fell out in bunches when I wasn't in the shower. Imagine my head of hair in the picture above diminished so much that you could see my scalp in multiple sections. I had bald spots.

As a female, a 24 year old female (at the time) who felt like I was on top of the world, in my prime, hair loss was one of the most traumatic experiences to crush my world.

I tried to wear headbands to disguise some visible scalp areas. I sat in the back of class so no one could stare at my head. I cut my hair short and short as they said short hair conceals thinning hair. I rarely left my home. If I did, it was to go to school, to my internship and to the home of my boyfriend  at the time.

I cried every day, every single day.

I tried to keep a happy face for everyone, especially my mom who took my diagnosis worse than I did. I broke down this one day that I remember it so clearly. It brings tears to my eyes 4 years later. I was watching TV on the living room couch. My mom came behind me and said, "your hair. We can go buy a wig. Let's go buy a wig." And then she started crying. With a brave face, I said "no. It's okay." She insisted, I refused. She left and I ran to my room bawling.

On another occasion, I remember my brother was brushing his teeth. I was combing my hair. And I turned around so he can see the back of my head. I asked, "can you see my bald spots?" He took a gulp and with a crack in his voice he said  "yes." My brother and I don't "talk" about serious stuff. But he knew. He knew how much it hurt. He hurt with me. He hurt just to tell me.

I don't have too many pictures of myself from 2010 - 2012 just because I avoided them. I felt so ugly. I had the steroids "moon face" due to meds. My hair was falling out. I was a not cute hot mess. I felt like (excuse my French) shit. 

Spring 2012 was when my hair started to grow back. I was taking a biotin supplement which I think helped speed up the process. I've tried shampoos and this spray that did not work. For nearly 2.5 years, I kept my hair short to conceal. By spring 2013, my hair was thicker and growing faster. Most, but not all, of my hair grew back. I was happy with it. 

By 2014, I felt beautiful again. 

This is me in May 2014. This was the first time I felt genuinely pretty in years. 

Fast forward to September 2014. I notice my hair falling out more and more. I know it is normal for hair to fall out daily. What was falling and how rapid was not normal. 

Mini clumps were falling out in the shower. I constantly felt tickles on my arm due to loose hairs falling onto them. 

I woke up one day with many hair strands on my pillow (it wasn't as traumatic as in 2010, but still very much so). I got my hair cut right above my breasts within 2 hours of waking up. 

It's happening again I thought to myself.

I cried. I panicked. My hairdresser noticed my  random small bald spots. I told her to comb lightly. And she did. Mini clumps of hair would drag out with the comb.

She saw my face. "You'll be okay," she said. "If you got through it before, I don't see why you can't get through it again."

These are mini claw clips. I used to need 4 to keep my hair up in a secure bun.

Now, I only need 1 or 2 if my hair is feeling very poofy. It's a sad reality. It makes me sad when I tie my hair up to see gaps at the side of my head. It's so weird that my hair dries a gazillion times faster because it's a lot thinner. It's so weird that I when I hold my hair, I notice a grave difference in what it was months ago and even years ago.

My most dreaded moments of the week: washing my hair in the shower and seeing the hair at the drain. 

I know it's not the end of the world if my hair falls out. But it opens up a whole new can of worms: of flashbacks, insecurities, worrying about my health. 

In all honesty, hair falling out now freaks me out. I'm getting older. Hair doesn't always grow back as you get older. Hair falls out. Two odds against me. Granted, I'm in late 20s, still young, but still getting older. 

I'm not really sure how to end this blog post.

I really feel like I just spit out a whole bunch of words.

If you made it this far, thank you for reading...and you're a trooper :)

<3<3<3

Four Year Purple Anniversary

If you read my post on My Lupus Story, you will learn a big part of me: I have Lupus. As a refresher or for your knowledge, Lupus is an autoimmune disease in which the immune system is hyperactive. This means, my immune system is in overdrive. My immune system cannot distinguish between the bad cells and the good cells of the body. Instead of destroying the bad cells, my body destroys both the bad AND good cells.  Destroying good cells is not a good thing. It leads me to getting sick in all types and forms. Lupus can affect any organ of the body with the kidneys being the most common. Kidney problems is a major functioning organ of the body. When the kidneys don't work, your body has difficulty functioning...okay, my intended refresher lasted longer than I had hoped...but I hope you learned something :)

Every year in July, I celebrate what I call a "Purple Anniversary." Purple is one of the colors that represent Lupus (the other is orange). My Purple Anniversary is my celebration of life. It's my "F*ck You" to Lupus saying, I'm still here and I'm happy and healthy to the best that I can be. 

Every year, I try to do something in the outdoors. Lupus patients are sensitive to the sun rays. Too much sun exposure (and some are more sensitive than others) can lead to a Lupus episode, or flare. In the past, I've done bonfires at the beach in the late afternoon when the sun is down, afternoon beach trips, and dinners. I also make my guests wear purple :) I'll link all my relevant Lupus stories below if you're interested in seeing my Lupus journey.

This year, I didn't have my typical Lupus celebration. I felt that I had a lot of triumphs and celebrations this year, that those successes in themselves were a big "boo yeah" to Lupus. This year, I've paid off both my undergraduate and graduate school loans, I found out I was able to keep my $18,500 scholarship (long story), I was stepping up at work as a leader, I had many amazing birthday celebrations, I went to the Philippines. To be honest, by the time July hit, I was celebrated-out!

So this year, I didn't quite have the typical July celebration but I do feel I had a lot to celebrate. My triumphs and my feats are enough "F*ck Yous" to Lupus. 

I have a lot to be thankful for. Lupus still has time to progress and takes it course, but for the time being, I am as healthy as I can be. And I hope and I pray that I can continue to be. 

So here's to celebrating another year of life, health and happiness. I don't necessarily need a certain month to kick Lupus in the arse ;)

Happy One Year Purple Anniversary

Happy Two Year Purple Anniversary

Happy Three Year Purple Anniversary
Lupus Awareness Month
Graduating With Lupus

YEAR THREE

Beach Bonfire

YEAR TWO:

Wine and cheese party

Afternoon beach date

YEAR ONE:

Dinner, beach and gelato

Dinner party with purple flowers

YEAR FOUR: I JUST KEPT CELEBRATING LIFE

Philippines Trip

Leading a pilot program at a major Los Angeles hospital

Freedom Party: CSUN Edition

Freedom Party: UCLA Edition

And the celebration continues...

<3<3<3

Lupus Awareness Month

Happy Lupus Awareness ACTION Month!

(credit: www.mdjunction.com)

Once again, May has been designated Lupus Awareness ACTION Month - a time to bring awareness to this horrible autoimmune disease that affects the lives of millions. Even with the growing Hollywood spotlight on Lupus (thanks to Snoop Dogg as his precious little girl has lupus), there are still millions of people out there who have never heard of lupus. And this is NOT okay.

Hopefully, this  month can produce the awareness and education, which produces support and donations, which funds research to find more effective medication at maintaining lupus, or even better, CURING lupus.

Sounds simple right? Kinda...Awareness only works if we actually start that discussion about lupus. 

How can we start that discussion? you might ask.

Simple! 

May 16 is "Put On Purple Day." I'll be wearing purple and so will my friends, my family, and my coworker who knows. They will tell their friends, their family, and their coworkers to wear purple on May 16. Their family, their friends, and their coworkers will ask "Why? What does purple mean?" And TA-DA! Discussion started.

Awareness doesn't mean expertise. I'm not asking a lot from you who may be reading this.
I just want you to know that lupus exists and oftentimes it hurts. Lupus is not typically something you can "see" in a lupus patient. Lupus patients are often told "you don't look sick" by those that don't understand. We need to stop this ignorance.

If this post is all you read then I'm okay with it. At least you know it exists. If you got this far into this blog post, thank you.

And if you want to be an even greater super star, check out the links below to learn more.

Lupus Awareness ACTION Month
What is lupus?
Frequently Asked Questions About Lupus


Lastly, please don't forget to PUT ON PURPLE on May 16. If that's all you can do, that'll make my heart happy.

<3<3<3