18 YEARS

My birthday is coming up. In a few short weeks I will be 36!

Not quite sure how that happened so quickly… but here we are.

As this day approaches I have been thinking about age, and all that comes with it.

I know age is just a number… you are only as old as you feel.  

It’s just that THIS specific number represents a huge milestone in my life.

I have now officially lived longer with FSGS than I have without it.

I keep asking myself…

How is it 2018 already?

How have I made it 18 years (?!?!) as an adult?

How did I get here?

Let’s set the scene: It’s 1999, I’m a senior in high school, and my biggest worry is if I can find the right shoes for my homecoming dress (hint: I did!) and one day at school I realized my ankles are swollen.

Don’t you just love those 90’s shoes?!
Love those 90’s fashion choices

I thought maybe I’d had too many Cuca’s burritos (shout out to the Redlanders who know the struggle), but the swelling continued throughout the week. I saw a doctor, who ordered a urinalysis, and diagnosed that I was having kidney issues due to loss of protein.  The next day I was referred to a Nephrologist– a doctor who specializes in kidney function.  

It all happened so fast.

At the time I had absolutely no idea what was going on.  Was it serious? Was it just a minor issue?  Could I take a few meds and feel better? I couldn’t even begin to fathom the ways that day would change my life and start me on a path I never could have anticipated.

It was in January of 2000 that I received the official diagnosis of Focal Segmental Glomerulosclerosis (FSGS).  

That day stands out in my mind for multiple reasons:

  1. It was my first time having to spend the night in a hospital (other than when I was born of course).
  2. It was a friend’s 18th birthday and she brought me lotto tickets! Not only did I win the lottery that day (literally – $10!! and figuratively– receiving a rare disease diagnosis), I also set down a road of self discovery, lots of pain, personal growth, and having to grow up faster than I would have liked, all the while coming to realize I was a much STRONGER person than I ever imagined I could be.

I was still a kid, only 17, when I received that fateful diagnosis.  I was a naive teenager. I thought I could take some medicine and I’d be better.  It didn’t even cross my mind for one moment that it would last this long… that it would be a chronic illness I’d have to deal with the rest of my life.

I had NO IDEA what I was getting into. I had never been sick before this, never broken a bone, never even had to go to the hospital. The worst physical ailment that had befallen me was getting the chickenpox, TWICE. Sometimes I look back and envy that young girl who still envisioned a bright and shiny future.  Other times I look at that girl and feel bad for her and the treacherous journey she had ahead of her with NO CLUE what was coming. When I was diagnosed, I was a little scared but just could not grasp the severity of the diagnosis.

I didn’t even cry.

It was on that day that every plan I had for my future went straight out the window, without me even realizing it.  I wanted to live away at college, study abroad, backpack through Europe, stay at hostels. I wanted to be young, wild, and free.

Life had other plans for me.  

Starting to show signs of Prednisone induced “moon face”

I was able to do the college thing for a few years, but ultimately ended up on dialysis, tied to home because of my need for extra care.  

I never got to travel, I never went to graduate school as I had always planned to, I never lived or studied abroad… or even outside of California for that matter. Although, if you are tied to home… it’s pretty freaking lucky that home is sunny, beautiful Southern California!

img_2920
UC DAVIS class of 2007 – still rocking that moon face 

Through a few transplants (I don’t have the space to get into it here… way more details on that to come in a future post!), I struggled through college but made it out the otherside… degree in hand. 

It was my own experience with the healthcare system that led me to my career in politics in my 20s. I saw how flawed the system was and how many people were hurting and not receiving the care they NEED TO LIVE because of insurance issues.  I dealt with plenty of those myself along the way. Fighting for my own care and having to play my own patient advocate inspired me to give back through public service. I wanted to help those who struggle to help themselves.

Family and this new passion led me to living in Sacramento.  

It was in California’s capital city that I discovered new passions and met amazingly smart people who were trying to change the world.  I made an entirely new group of friends who, now, are like family. There are so many experiences I ended up having in life that because of that diagnosis… and I’m grateful for every one of them.  

Sailing around Puerto Vallarta 2010
Thunder Valley with the Sacramento fam

Instead of being young, wild, and free I was young, tired, and home bound seemingly ALL THE TIME.  I gave up trying to imagine a life without FSGS a long time ago.  All it did was bring pain and proved, repeatedly, to be a fruitless exercise.  What was I going to do… wish it all away?  All I was doing was wishing for a life that ceased to be possible the day of my diagnosis.

My disease is now an adult.  It’s been here 18 years and has no plans on leaving anytime soon.  I learned acceptance many years ago, and I have to say, it was the best thing I’ve ever done! It allowed me to live the life I had to the fullest extent possible.

Zip lining through Puerto Vallarta

So… in honor of the big 36 for me and 18 for my FSGS, I have a few fun things planned within the next few weeks that will bring the thrills back. I will do a post on my adventures after I make it through. STAYED TUNED.  Things are about to get… lively.

For a few brief moments… I will be young… wild… and free (like a BIRD).

~ Bridget (BIRD)

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