Becoming an Activist

Inspiration can and has come from the most unlikely of places.  My latest inspiration has come from of all places the airport and the plane ride “home.”  These days especially during cold and flu season, traveling stresses me out.  Every time I hear somebody cough, I freak out and part of me wants to go into panic mode.  Germs are all around us and I’m kind of REALLY immunocompromised. 

My good immune system first of all isn’t as strong as it should be so it can’t fight off things like it should instead of attacking the “bad things,” it just attacks my body causing all this autoimmune disease fun.   Maybe for Christmas I’ll get my immune system some directions or maybe even a GPS so it stops getting lost and attacking the wrong things?!  I’ll have to work on that… 

I know that I’m supposed to wear a mask, especially in airports yet it makes me feel kind of uncomfortable and self-conscious.  I mean yes the mask isn’t the most comfortable thing in the world, but it’s more that doing that is a physical sign that something is wrong with my body.  One of the best things yet one of the worst things about lupus or my newest diseases are that “I don’t look sick.” 

If you saw me traveling yesterday, I would have looked like any other weary traveler.  I like that as long as I can conceal and try not to feel, I can “pretend” to be normal and healthy.  Unless you saw what was in that perfectly pink and flowery luggage I was wheeling behind me (suitcase completely full of meds and medical equipment) or that I obsessively wiped down everything with Lysol wipes or me using hand sanitizer like a champion or when I put my face mask on, that one would realize ohhhh there might be more than meets the eye…

The other things can pass for just anyone else with maybe some germaphobe tendencies.  The face mask might as well be a flashing neon light saying HEY YOU LOOK AND OBNOXIOUSLY STARE AT ME.  I’ve had some of the most interesting encounters while wearing my super awesome mask (it has colorful flip-flops on it).  Typically they look at you like you’re carrying swine flu plus MRSA plus pneumonia and for good measure you’re also trying to bring the plague back.  Well actually sir or madam I have an immunodeficiency and this is to protect myself from idiots like yourself who along with your children coughing everywhere are driving the germ express.  Infections can make me really sick really quickly and I’d rather not spend Christmas in the hospital. 

But last night as people were getting off our plane, I had the most magical encounter with a family.  There was this cutest little girl who was getting home from her Make a Wish trip.  I’m guessing this child has had an organ transplant because her parents had on t-shirts about the importance of donating life.  Anyways her mom said to her, look at her wearing her mask like she should be.  What a good role-model for you.  This little girl was so stubborn and hated wearing her mask too.  But she saw me, “a big kid” wearing the mask and seemingly okay with it and I think something clicked inside that little girl. 

Such a brief encounter, but that moment something clicked inside me too.  I’m sitting there in a mask and I realize for goodness sake, I can’t be embarrassed or ashamed or insert word here because I have to wear this thing for my own health and well-being.  I know I’m a feisty and stubborn individual and I realized that I’m being ridiculous.  I need to take a stand.  I could either slink over in my seat embarrassed by my situation or I could proudly rock a mask like nobody has rocked a mask before...

Those that are closet to me probably already know which option I’m going to choose.  I rocked that mask through the rest of my airport experience.  I am going to become a voice and a face of lupus and sjogrens and celiac and CVID.  Well maybe I can’t tackle them all at once, but I’m going to do what I can.

I want to use my story to raise much needed funds for research so better treatment options can be found.  I know I already spread a little sparkle and glitter everywhere I go, but I also need to be spreading awareness too.  I’m dreaming big and I want to become a voice on Capitol Hill.  I want to educate our law makers about the harsh realities of lupus life and encourage them to support lupus research.  I want to share my stories in a perfectly purple ball gown at lupus galas and fundraisers.

I already have some fantastic ideas for how I’m going to spread awareness when I totally rock the Princess Half in February.  I also have some other pretty awesome special projects in the works.  This is just the beginning and the sky’s the limit.  I went to bed and woke-up feeling ridiculously happy and ready to take on the world.  When I’m determined, nothing will get in my way and anything is possible.  All I can say is I hope the world is ready for me because I’m certainly ready to take it on.        

Finding the Fun in FUNgal Infections

It’s kind of funny how things that would have driven “old you” crazy and last year you would have not been able to handle, have now become common place and just another day in the life.  I’m still playing the fighting two infections at once game (thankfully that number hasn't increased) and it’s gone from a serious struggle, to basically the “norm.”  There's this whole fungal infections have been playing games of hide and seek in my GI system since September.  Who knows how long it was hiding prior to us seeking it in September? 

I should probably make a tinder for it so it can find "true love" or even a fun night elsewhere and leave me alone.  If anyone is looking for a good time, its interests include: causing a ruckus, inducing nausea and the occasional vomiting.  It’s quite the strong-willed organism and the mild anti-fungals do nothing for it.  Maybe when stupid doctors make me try them, they’re in my stomach laughing thinking silly human thinks this will stop me?!  Hahahaha Try again.  Obviously I know that the infections aren’t saying these things, but at times I know what they are saying without them actually saying anything we're just on that level.

Thankfully I have some amazing specialists that understand my current circumstances are “complicated” as we’re in the process of diagnosing an immunodeficiency disease. They are willing to put me on long-term antifungals and antibiotics.  I was dealing with that fun on vacation as my old internist is functionally useless and if I wasn’t moving soon I’d be firing another doctor.

Due to the risks of this antifungal medication on my liver, I can only take it three times I week.  I’ve also learned that the fungal infection loves sugary foods so I mostly drink water.  I gave up desserts on-board the cruise to have some extra fruit or I avoided the juice or drink I may have wanted to instead enjoy something else sugary. It’s this really fun balancing game.  On the antifungal days I’ve learned I have more freedom to have some more sugary foods before I end up getting sick or curling up into a ball because my stomach hurts so badly. 

Yesterday on the flight home I was wearing my super awesome face mask and as always nausea was still quite prevalent.  I ended up getting sick on the plane and freaking out the flight attendant.  I was fine and like okay I’m kind of used to this so lets keep doing my thing.  She insisted on giving me stacks of paper towels, stacks of barf bags, and a whole white plastic trash bag I could use at my leisure. 

Last night on that plane, it hit me that life’s about finding the fun in FUNgal infections.  I could have been so angry and like why me and why did I throw-up as soon as I got on the plane (I mean I know why I throw-up because I took a risk and had dessert with lunch), but instead I dealt with the situation, popped some gum and kept smiling and doing my thing.  At this point, I try to not let things get me down as I’m not all about life.  I mean I throw the occasional pity party, but I don’t do my daily exercise as I swim through seas of self-pity.   

It's all about your attitude and how you respond to something.  I can’t be wasting my time or precious energy on feeling sorry for myself about things I can’t control.  Instead I’ll just focus on things I can control.  I’ve learned from that experience one shall never leave home without gum, a travel toothbrush, sanitizing wipes, and some barf bags.  See I’m still learning something new every day!

Status Quo-dom

For me, I’m the first to admit that I’m an overachiever and a perfectionist.  “Good enough” has never and will never be “good enough” for me.  I never liked the status quo.  I like to challenge myself, challenge the limits of what is possible and keep on striving for improvement.  This translates to all areas of my life from lupus life to how I approach doctor appointments and even how I ended up deciding to tackle a half marathon.

My malcontent with the status quo is what led to me pursuing and finding another immunologist.  If I listened to my one specialist, I would still be suffering silently with no answers and nowhere close to finding answers.  He wanted to keep taking on the “wait and see approach.”  I could no longer deal with that so I decided to go on a quest for some answers.  This new dr is actually incredible and she’s just so bouncy and full of life.  We were actually laughing in my appointment.   Laughing at my misfortune, but I’ll take it!  You’re either going to laugh or you’ll be crying and I’m much more team laughter.

She actually wants to take on the challenge that is my case and wants to find some answers.  She believes I have another disease to add to my ever growing list.  That’ll mean another abbreviation, another fight, another treatment protocol, another whole set of worries and concerns yet this will also mean some answers.  Reasons to why I keep on ending up in this constant state of infections, why fungal infections keep on playing in and wreaking havoc on my GI system, why my immunoglobulin levels are so incredibly low, and why I don’t respond to medications like I “should.”

At this point I’m stuck.  Do I hope I have another illness as that could bring about some much desired answers?  Do I really want another incurable illness?  Do I want to best case have monthly IVs forever?  Do I want to keep having to worry about any infection or illness sending me to the hospital?  I’m trapped on this Ferris wheel of doom and there's no way off.  I'm in a lose/lose situation.  I have no idea what I want or what I hope for anymore. 

Sometimes I almost find myself hoping I have this illness as then maybe starting treatment for this will help my constant state of infections that I’ve been really struggling with.  I’m tired of struggling, I’m tired of all the puking and barf buckets.  I’m tired of everything making me nauseous even with anti-nausea meds.  I’m tired of the fact that I’ve learned to master the art of car puking and puking on my runs. 

Yes I’m tired of all this crap, but at the same time I’m not ready to give up or accept this as my new reality.  Most people would accept this and try to move on, but that’s not me. I’m going to keep fighting, keep seeking answers and keep doing what makes me happiest.  If that means that I’ll master the art of run puking then I’ll do it.  I have half marathons to run and if lupus won’t stop me than neither will this. 

My current discontent with this status quo-dom has also led to me wanting to become a voice and an advocate for change especially when it comes to the lupus world.  In the past 50 years, only one drug was approved just for lupus.  That drug has failed for me and most likely induced a cancerous precursor (hello another abbreviation and my dear friend, M-GUS) so every day I pop pills that were designed to treat organ transplants and cancers.  These drugs come with awful side effects, but then again that’s the cost of staying alive.  That is unacceptable.  I will use my story and use my running of halfs to spread awareness for lupus and raise money for research. 

I can no longer be afraid to share my story.  I have a story, I have a journey that can be shared, can be used to inspire others.  If I’m afraid to open up and share my story, afraid to take a stand, afraid to fight for change, afraid to raise money for lupus research then how can I expect others to not be afraid and do these things for me?!  I need to be the change I wish to see in the world, I need to share my story, I need to make a difference and by doing so I hope to inspire others to impart change in their own sphere of influence.          

Wanderlust

When I was younger, I enjoyed traveling, but at the same time I didn’t crave it or “need it.” Then in late December 2008, I was diagnosed with Celiac Disease. We had a family trip to Disney planned for that January. That was my first trip since being gluten free. The chefs at Disney were able to feed me safely and I didn’t get sick once that week! Since then, Disney has become our go-to destination.

They could feed me and my mom safely and it is also very wheelchair accessible. I became a creature of habit and I knew it was going to be safe there so I didn’t really want to try or go anywhere else. I became almost terrified to travel elsewhere and step outside of my comfort zone. Even the smallest amount of gluten makes me violently ill and I found (and still find it) it hard to trust places to feed me safely.

Even the thought of trips outside “the world” led to lots of anxiety then once I got diagnosed with lupus, my perspective definitely changed. At first I was still truly terrified to go anywhere else as I didn’t want to deal with the lupus stuff plus celiac and all my other autoimmune illnesses. Slowly I started to change my perspective and become intrigued at the idea of traveling elsewhere, but ultimately I couldn’t bring myself to go anywhere else.

Then many times this past year, I came face to face with my own mortality. At one point, I could physically feel my body shutting down and I was terrified. I made bucket lists and a list of things I hoped to do before I die. I didn’t think I was going to live through Christmas 2013 so I really didn’t think I’d live long enough to accomplish things on my lists.

Through those experiences something inside me clicked and my attitude completely changed. I came to the realization that life with chronic illnesses is so unpredictable and I have to make the most out of life NOW. Yes I know that at any time lupus could kill me. Yes I know that I can very well become another tragic disease statistic or I could defy all odds and live to 122.

I think that point has hit my parents really hard too. I’m their youngest, I’m their “baby.” They’re supposed to be able to protect me, but nothing they can do will protect me from this. They’d trade places with me in a heartbeat if they could, but unfortunately that’s not an option either. They’ve become focused on making memories and having fun now versus doing things “some day.” As “some day” isn’t really guaranteed, everything can change in an instant. We’ve traveled more and made more magical and wonderful memories in this past year than we have any other year prior to this.

Cruising has become our escape from the world of chronic illnesses. Each day is filled with adventures and shenanigans and the most beautiful frolics. It’s a great compromise as during the day, I’m free to explore new lands and go on adventures yet I know at night I can safely go back to the boat where they can prepare me allergy safe meals. There’s this sense of peace and serenity I find at sea and I believe I’m happiest there. There’s no specialist appointments, no fighting with the insurance or medication companies and no trips to the pharmacy.

It has become our way to celebrate life, bravery, and defying the odds. On these adventures, I feel hopeful and like I can do this and I’m going to live forever so I can take my (future) children on a Disney cruise and on the most splendid adventures. Instead of fighting lupus and everything that goes along with it, my priority becomes living in the moment and the pursuit of happiness. Yes I still have to deal with and be mindful of my restrictions, but I’m becoming a master at managing that stuff.

Ever since my latest cruise, I’ve wanted, no actually I’d say it’s more of a yearning to travel and see the world. On that trip we sailed from San Juan and went to St. Lucia, Antigua, Grenada, Barbados and St. Kitts. Such an awesome itinerary and I loved all of our ports of call! Everywhere on that cruise, was my first time going to that place. It really opened my eyes to life outside my comfort zone.

I love planning trips, I love day dreaming about places to go, I love pricing cruises “just because,” and I’ve made a list of places I want to go before I die (and the list keeps on growing!). While traveling, I just feel so free. I’m not afraid for my future, I’m not the lupus girl, and I just feel so alive

For my next adventures, I’m going on a 7 night cruise next month. Just to the Caribbean so nothing too exciting or crazy, Yet it’s going to be so beautiful and peaceful and I’m ready to escape this icky weather we’ve been having recently! Plus we’re bringing along with us my 9 year old cousin and partner in crime and I haven’t seen him in almost two years so that’ll be some added fun.

My next big adventure will take me to Denmark, Estonia, Russia, Finland, Sweden, and Norway. That is the adventure I’m BEYOND excited for! These places are all so unique and have such rich history. I’ve been learning about the places I’ll be sailing to and personally I find it all fascinating. Just planning this adventure has gotten me through many bad days. Some days I want to say I’m done, I can’t do this anymore then I remember or they remind me about this trip I have and how I have to be “healthy” enough to enjoy it. Other days just day dreaming about these adventures is enough to get me through the puking, severe pain, and just pure dreadful days.

I think wanderlust perfectly sums up my life right now and it’s become one of my new favorite words. There’s so much out there, outside my little bubble and outside my comfort zone. There’s some of the most beautiful lands and most fantastical adventures still waiting to happen. I crave adventures, I want to see the world and experience things unlike I’ve ever experienced before. To quote one of my favorite Pixar movies, “Adventure is out there” and I can’t wait to see what my next adventures will have in store for me!

Maybe?

On Friday, I got my latest blood test results and these results don’t make any sense.  I’ve googled and googled and I’ve tried to make sense out of all of this, but maybe it’s almost best to stop trying to make sense out of the nonsensical.  I know that nobody can probably help me with this until I see my newest new immunologist which isn’t until November 14^th.  At this point, I can’t help but wonder at what point does the quest for answers become more destructive and troublesome than having no answers? 

I left Florida in July under the presumption that I was going to see some specialists and get some answers.  I left my friends, a “family” and what I loved to try and “get my health issues under control.”  I’ve seen countless experts at some of the best hospitals in the country.  I’ve gotten more blood tests done than I can count and I’ve had lots of other medical tests done.  We haven’t really gotten any answers.  Each round of testing, each new specialist appointment has only led to more confusion, more frustration, and more unknowns and truthfully I’m getting kind of tired of all of this crap.

I feel like some of these doctors have no real sense of urgency when it comes to this.  Let’s wait and see if your blood work improves.  Let’s wait and see then send you to even more specialists.  They seem to think that my only job and all I’ll ever do is be a “professional sick person” and that couldn’t be any further from who I am and who I aspire to be.  I have goals, hopes, dreams and aspirations.

I feel like right now I’m at this impasse.  For goodness sake, I’m only 24 years old and I’m supposed to be “at the healthiest times” of my life.  If this is my healthiest, than I’m truly afraid for what the rest of my life will have in store.  This past year alone, I’ve had two different cancer scares (thyroid cancer and multiple myeloma), I’ve watched my diseases get worse, I’ve seen medications fail, and I’m dealing with long term side effects of the medications that I took to “remain functional.”  I honestly don’t remember the last day I woke up feeling well or had a pain-free day yet I try to not let that stop me.       

Maybe I’d be happier if I just embraced all these glitches and loaded up on meds so I can function and go back to doing what I loved?  

Maybe when I stop actively seeking answers, answers will find me?

Maybe in some cases no matter how many doctors I see, they won’t be able to “fix me”?  

Maybe somehow, someway everything will be okay and I don’t need to be “fixed’? 

Maybe this quest for answers is not the best or healthiest thing? 

Maybe all of this is just a lesson so this control freak can learn to let it go and appreciate what I have now versus wishing and hoping for answers and a “healthier” future?

I’ve definitely learned that there are no right or wrong answers.  There’s definitely no guidebook or instruction manual on how to best handle my interesting combo of illnesses.  I've come to terms with the fact that everything I do, I’ll end up questioning and wondering if this is/was the best course of action.

This past week, I've realized that I can’t keep putting my life on hold til I get answers  Maybe there are always going to be more questions than answers?.  Maybe I just need to embrace the struggle, fake it til I make it and believe in this crazy journey?  At the end of the day, I know that no matter what I need to keep pursuing my dreams.  This is my life not my specialists nor anybody else's and I just need to do what makes me happy.  

Who Says?

Yes I might be quoting a Selena Gomez song this week.  It came on my iPod during my run today and it helped inspire this post.  This song reminds me of the summer of 2011 that I spent as a camp counselor at a camp for children with special health needs.  It was the summer before the lupus diagnosis.  I knew I was sick, but I was blissfully unaware to how sick I was.  My campers loved that song and we had many dance parties to this song.  We’d turn it on, break out our best dance moves and just enjoy that moment.  We were all so happy and living in the moment it was just so beautiful.

I’ve never been one to follow the “norms” or do what I’m “supposed” to be doing.  I was reading books and I started kindergarten at the age of 4 because according to my preschool teachers I was “too smart” to be in preschool.  I’ve read Voltaire and Hemmingway for fun.  Oh and I’ve even looked at my dad’s old analytical geometry textbook just for fun and because I was intrigued by the subject matter.   

When it comes to my health issues and what’s been happening to my body this is no different.  Things don’t go how they’re “supposed” to be going.  I’m not responding to medications like I “should.”  If they say something is rare and probably won’t happen, chances are pretty good that it’ll probably end up happening to me.   Throughout all of this I feel like I’ve become tenacious, in a way I’m like a bouncy ball.  Things keep happening and I just keep on bouncing back.  I’m here to keep fighting, to keep defying the odds and to keep proving everyone and everything wrong.

Right after the lupus diagnosis, I was talking to one of my advisers and they told me I should probably plan on dropping out of college to enjoy the rest of my life as I’m probably going to die anyways.  I’ve also dealt with similar comments from professors.  Not only did I not drop out of college, but I graduated with two majors.  My first one was Biobehavioral Health and my second one was Human Development and Family Studies: Lifespan Human Services Option. (I know it's a mouthful and I bet you can’t say that last sentence 5 times fast J ) Who says people with lupus can’t successfully complete college or lead a productive life?  Well obviously those idiots did, but I did what I did best and proved them wrong.      

On my birthday adventures, I went zip-lining, I snorkeled with sea turtles and I greeted every sunrise with an enthusiasm most others couldn’t muster.  Who says life with a chronic illness has to be boring or means you can’t travel? Oh yeah I’ve gotten comments like that from some... Not only did I absolutely love my adventures, but I thrived that week!  I’m currently planning my next HUGE trip which will (hopefully) be a Northern European adventure of a lifetime.

When it comes to the Princess Half things are no different.  A girl that battles nerve pain, arthritis (in the vast majority of her joints), nausea, headaches, heart issues and so many other issues every day signed up to voluntarily run 13.1 miles just for fun.  Most of my healthy friends wouldn’t even consider doing that.  Yet there I am lacing up and taking on the world.   I’ve found such a sense of peace and I’ve fallen in love with the sense of freedom I find on my runs.  Who says people with lupus can’t be active?  People have told me that I’m crazy and they have no idea why I’m doing this to myself.  Well then again they don’t battle half the things I go through daily so I just smile at them and say why not?

Last week was kind of dreadful as I was dealing with yet another bacterial infection and the fungal infection in my GI system came back to play.  Who says you can only get one infection at once?  It takes a true champion and overachiever to get two completely different ones at once.  Then this champion completely rocked 4.1 miles today (my longest run to-date!)!!! 

My journey so far has been unexpected and definitely a struggle in more ways than one.  Yet through these struggles I’ve developed even more strengths.  I understand the importance of the everyday little things and making the most out of life.  I’m truly one that tries her best to seize every day and love the life I’ve been given (well some days are definitely easier than others) plus I've become one that gets to defy the odds, prove the specialists wrong, and make them truly think (all good things of course). I've discovered (as long as it falls within my realm of restrictions) that I'm the only one who says what I can and can not do.

Heading into this week I’m cautiously optimistic and surprisingly hopeful.  Yes we have more questions than answers but then again I’ve almost become used to it.  I’m just I have no reason why, there’s no logic or reasonable explanation behind it, yet I know better than to question it happy.  Who says one in my circumstances can’t be happy?  When I have a million reasons that I could be crying, I’m finding 1.5 million reasons to smile and be happy instead.      

Picking Up the Pieces

When you are little, you are taught that when you are sick you go to the dr and they can help make you better.  When you’re sick, you take medicine and that makes you feel better. You are never taught what if you see doctors and they don’t know how to fix you or they can’t make your boo-boos better?  What if instead, they give you the sad eyes and make you want to pop open a bottle of wine?  What if the medicine you take to try and fight your one illness causes a whole new set of issues and illnesses?

Those are the questions and issues I’m currently dealing with.  I’ve seen doctors at some of the “best” hospitals in the nations and I’ve gotten the I’m not sure what’s going on/I’ve never seen this before/I don’t know the best way to help you.  Some of the medications I took to try and keep the lupus under control seems to have induced an immunodeficiency (or at least that’s what they believe).  Now I’m seeing specialists and trying to figure out the best way to deal with this new issue while still dealing with the lupus and all the other issues.

Throughout all of this, when medical science is seemingly failing me, I learn that I can still cling to hope.  After all I’m an optimist and like to believe in happily ever afters.  I’d like to believe that maybe one time instead of an appointment leading to more questions than answers, we might have more answers than questions.  Hope is like this little glass mirror.  I cling to it, I won’t let it go, and I carry it with me everywhere I go yet I also know that it’s very fragile and it can be easily broken.

Every specialist appointment that mirror shatters and I’m left picking up the pieces and trying to put this mirror back together again.  I’m left finding reasons to still hope and still believe even though I’m feeling dejected, frustrated, and discouraged.  It’s definitely not easy and at times it might be some of the hardest things I’ve had to do.  It’d be so much easier to be cranky, miserable, hate the world, and give up instead I keep on trying to find reasons to be happy, keep laughing, and keep fighting.

As soon as I almost have this mirror back together again, it’s time for yet another specialist appointment and once again the mirror shatters.  I’ve come to almost dread specialist appointments as I know what it most likely means.  I get to pay a co-pay for somebody to confuse me even more and try to crush my dreams.  (I’d much rather be spending that money on new shoes or fitness gear)  Truthfully all of this is exhausting and can really take a toll on a person. 

Thankfully I have some amazing people in my life that will stand by me, break out the super glue, help me pick up the pieces and try to put things back together again.  They help me find things to get excited for and to keep fighting towards.  Also, I’ve discovered my passion for traveling.  Traveling has become a great escape from this world of doctors and illnesses and medical crap.  Planning and day-dreaming about my next adventures is a great distraction even on the worst of days.  There is so much of the world to see, so many adventures to be had, and it's all so exciting!  

This upcoming week is three doctor appointments and some more medical tests.  I’m not really looking forward to and kind of dreading this especially Friday as I have an early morning double feature.  Yet I remain hopeful that maybe this week, these new doctors will have some answers or at least be willing to fight for me to find some answers.     

Living with Intentions

I’m the classic perfectionist, overachiever, and doer.  Up until July, I had a job I loved working with people I loved and I was living the dream. Then my health took a turn for the worse, I had to pack-up, leave what I’ve grown to love and come “home” to focus on my health. 

All of this made me miserable and I became sad and angry.  Sad that my life was reduced to me being a “professional sick person” and angry that while I would give almost anything to get my health under control and be back where my heart belongs, there was not a damn thing I could do about it.  My drs told me my only job was to “rest” and focus on me.  I’m the furthest thing from a rest-er.  I hated having no sense of purpose or intentionality with my days.  I was going crazy. I felt like I was floundering and wasting my days away.  None of this is “me” and I’m usually one to find happiness in every situation.

I recently got back from a beautiful 12 day birthday extravaganza and on this trip I found happiness, true happiness for the first time since I left Florida.  Each day was full of new adventures and frolics.  On this trip something hit me and I realized I need to make some changes in my life.  I could either be miserable or happy, the choice was all mine.  It’s not going to be easy, but I’m going to do my best to choose happiness. 

In a way I’ve realized that I’m almost “lucky.”  Not lucky that I have lupus, the disease is progressing and we’re at an impasse, but lucky that I have such supportive friends and family.  Lucky in that with this time right now I can find, pursue, and devote my time to whatever lights my soul on fire and makes me feel alive.  It’s like one of my favorite running tanks “Stay close to anything that makes you feel glad you’re alive.” 

I can take classes (I’ve already signed up for one since I’ve been back), I can write my autobiography, I can blog or vlog, I can find new hobbies (maybe I’ll realize that I’m super awesome at knitting (I doubt it, but anything’s possible)).  Nothing is impossible (well besides the facts that I have to be mindful of my restrictions and immunocompromised state) and I’m going to live with intentionality.  I’m going to find ways to more productively fill my days.    

Time is a gift and it’s not a guarantee.  Nothing in this world is guaranteed besides death that is.  I don’t want to squander my days away by just surviving, I want to live, truly live.  I’d rather die young after an awesome life full of the most splendid adventures than live to be super old and be absolutely miserable.  I want to make the most out of and really enjoy the time I am given.  So here’s to embracing life, living with intentions, and seeing where the world takes me.    

Introduction

My name is Ashlie and I’m 24 years old. I’m a dreamer, a doer, an overachiever, and an optimist. I like to believe in happily ever afters, I love tutus, traveling, all things sparkly, all things neon, and dancing in the rain. I put the glad in GLADiator and the fun in dysFUNctional, but honestly it kind of works for me.

I'm just trying to live my life and bring happiness to this crazy, messed-up world we live in, but of course life is never simple or easy. I have disease ravaging my body which is currently kind-of putting a damper on my plans. Lucky me has won the autoimmune disease lottery and I have lupus, sjogren’s syndrome, celiac disease and an autoimmune thyroid disease. Despite all of this, I’ve caught the running fever and I’m training for my first half marathon.

This is my journey through the world of uncertainty and unknowns as I battle lupus and whatever else throws my way while training for the Disney Princess Half (and whatever other races I decide to conquer).