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!