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).