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!