The Luckiest Sick Girl

Today was not a good day.  Well, it was a fine day actually.  It’s sunny outside and warm and summer is here which makes it a pretty beautiful day, but I woke up this morning knowing it would be a bit of a struggle.  The last few days I haven’t been on my game.  I have been exhausted..not feeling up to doing much, not focused, stomach issues making me drag and kidney pain a little worse than average.  I woke up this morning with swelling so bad I could barely bend my fingers.  I put on 4 pounds in 24 hours just from swelling.  Possible from poor diet choices as well, I mean let’s face it when we don’t feel great, our “go to” can often be the unhealthy foods we aren’t supposed to be eating.  Who can resist comfort foods in a time when we aren’t feeling comfortable after all.  For me, sign me up anytime for chips and queso, pasta and ice cream.  It’s all I need to get by, forever.

Although these last few days have been rough and I am stressing that there may be something going on (probably with my kidneys as all the signs are there) I have been thinking quite about about the positives in my life and how lucky I really am.  I am often asked, as I was today by my nurse on the phone, how I am handling all the stress, or how I do handle it in general?  My go to response has always been “well, it could be worse right?”.  Yes.  It could be.  There are moments when I hate that I say this.  Where I tell myself, you’re crazy, how much more of this are you going to be able to handle.  Yet, I always come out on the other end.  Why?  Because it really could be worse.  I consider myself the luckiest sick girl in the world.  It’s all about perspective, and perspective can change based on how I am feeling.  So I felt today’s post would contain some ramblings on how our thoughts can take off depending on good vs. bad days and what I do to keep myself up beat.

Here’s the way I see everything on bad days…. I have multiple genetic diseases.  I have had 26 surgeries.  I have passed 100 kidney stones. My Bad days are getting too frequent.  I depend on medications to survive most days.  I’m struggling to survive. I deal with the stress of illness, work, being a parent, not worrying my loved ones, the things that might be and the things I know will never be because of my my illness.  I am alone.  No one understands.  My lifespan will probably be cut because of my illnesses. I don’t know if I can continue doing everything I do. I’m tired of the day to day suffering.  I am in so much pain. My doctors don’t know anything.  I have days where I am motivated to tackle the world and days where I am ready to throw in the towel, give up and doom my life to live on the couch and watch endless netlflix videos rated 2 1/2 stars.  Let’s face it, if they are not over 3 stars we know they are no good!  haha.  See, still have to throw in a little joke right?  That’s how I keep going.

Now.  Here’s how I see it on the good. I have multiple genetic diseases.  I have had 26 surgeries.  I have passed 100 kidney stones. I am having a good day.  My good and bad days are not greater than each other.  I have a pretty good life.  I have the support of my friends and family, always.  I have a husband that is beyond anyone I could have dreamed of having.  I have a daughter I was never meant to have.  I have a beautiful home.  I have a few pretty amazing doctors that will do anything for me.  I have a job and people I love to work with.  I am here.  I can keep going.  I have medicine to help me survive.  I have food! and I have netflix!

It’s all a matter of perspective.  I think far too often it’s easy for us (you know, the sick people) to focus on.. well.. being sick!  It’s hard not to when you are living your illness day in and day out.  Health is a priority for living life, especially if we have a notion in our minds of what that life should be.  Being sick, changes those notions, which in turn changes our priorities and our perspectives.  How do I deal with the stress?  Well I let go of the things that are not worth my time to stress over.  Does it always work?  Hell no, but I can always re-group re-align and move forward knowing what matters and what doesn’t.  It’s a good place to start when coping with a bad situation.  Looking at it a different way, focus on the positive and what I do have going for me rather than what has been taken away.  So what’s next when that doesn’t work?  Food!  of course!  we already covered that!   Sometimes that’s not actually an option.  Side bar! For many of us we have dietary restrictions and certain foods may make the current situation worse.  For instance being in the hospital with kidney stones/infection and having your doctor walk in on you downing some chik fil a and chocolate.  True story.  My kidney specialists face was priceless and it was worth it just to get his “what the fuck Maegan!” response.  Hahaha. I knew better and I didn’t care, it made me feel better!  No shame in that.  We ARE allowed to do the things we are not supposed to do spoonies!  Don’t forget that.  Live a little, piss off your doctor every now and then, at least if you don’t get a laugh, you’ll have a great story.  That’s what life is all about right?  Telling our stories.  If I didn’t have these stories to tell this would be the worst blog ever.  Not that I am saying it’s that great!  But boy do I love a good story and love telling them.

Coping mechanism number 3!  Why do I love telling stories? Because I love to talk (duh, for those that know me) and I love to laugh/make people laugh.  The best thing about telling your stories is not just for the reaction though, it’s for that other perspective.  My medical stories are not always very hilarious, yet when I start to share them, people always seem to find the humor in them and I love that about people.  What is life without a little humor and the company of those you love over a glass of wine and lots of laughter!

I could rant on and on about various things that help people get through tough times.  I can provide advice of lifestyle changes you can make to eliminate stress like doing yoga, eating healthy, etc.  If I’m going to be honest, it’s in your hands.  Only you have the ability to change your life and to find what it is that helps you get through the day.  If that means having days where you need to have a pity party then do it as long as the outcome will be something that will get you back on track.  Most importantly, coping and keeping a positive attitude requires your ability to embrace the constant changes your disease will throw at you and not letting it crush you.  It takes a while to get here, but those with chronic illness learn quickly that nothing can ever be predictable with our diseases.   Plans constantly get cancelled and your disease takes away things.  The sooner you accept this, the sooner you can move on and embrace your new reality.

We all need something to help us survive the pain, the nausea, the swelling, the hospital stays, the doctors visits, the medication side effects, the moments where we feel like we can’t survive.  Sometimes it just requires a second glance at the way we do things. Me?  I laugh, I talk, I eat and I am grateful.  It’s funny to say something like “Hey, I’m the luckiest sick girl”, I get it, these words just don’t go well together.  This is my reality though, and knowing, embracing and coping with it, that get’s me through today and on to the next.

~Just a Regular Sick Girl…and today, a positive one!

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