Note: Originally written May 2015.
When someone asks you to describe yourself is it a difficult question?
Do you define yourself by your career?
Your role in your family?
Roughly a year ago my best friend sent me a personality test she had really enjoyed and thought had helped her a lot in her journey to self discovery. I set out to take it and as I read each question I was confused. Do I answer as the old me – self motivated, ambitious, outgoing and confident, or as the new me – withdrawn, unmotivated, timid, exhausted?
I was completely lost. In a moments time, the life I knew and truly cherished had slipped away.
I am not exaggerating when I say I cherished my life. Frequently a status and photo will appear in my timehop app with a memory of me doing something as ordinary as hiking with my pup, an adventure the two of us tackled most days of the week, and I am exclaiming how fortunate I am and how much I love my life.
I was not born wealthy, or poor. My parents are from Michigan. I grew up in California but with Midwestern values. Our days consisted of school, sports, and a dinner my mom prepared that we ate together as a family at the table. our vegetables were corn or green beans from a can (I preferred the green beans).
We went to catechism on Mondays with the rest of the catholic kids from school and on Sunday’s mom would bribe us with Taco Bell if we could get through an hour of mass without causing a scene.
I guess I should tell you that “us” consists of:
- my older sister, who was the boss and who we followed blindly, even if the order was to sniff her stinky arm pit, thankfully this relationship has matured and I haven’t sniffed her pits in ages and following her blindly would be perfectly acceptable because her moral compass is on point.
- me, the neglected middle child (as if! my childhood was built around fairness)
- our baby sister who was a mean, mean, mean little girl who would dig her nails into our arms to get her way, but she has grown into a kind, nurturing, loving adult, that as far as I know, no longer uses her nails as weapons.
- My parents who still to this day seem happily-ish married after more than 35 years. They have definitely shown us what commitment looks like through the good and the bad, sickness and health. My parents were never the parents that made you feel like you had to go to college, get all A’s in school, or not mess up. We have my parents unconditional love and support. As long as their girls are happy, healthy and safe, they are happy.
I was a little above average in high school i would have to say (this may be the delusional self confidence my dad instilled in me speaking). I was student body president, key club secretary, homecoming queen, prom queen, received a scholarship for most athletic senior (along with many other scholarships), I took all the AP classes offered, I had a job, and I was incredibly social.
College proved that I had been a big fish in a small sea, but my confidence never wavered. I swam in college and did well (not great.). I received good enough grades, and great ones when I was interested in a topic. My social life continued to thrive. I went to college for a loooong time before finally deciding it was time to grow up and get on with it. I finally left the junior college and earned my bachelor’s degree within 18 months and before even graduating I found myself interviewing for a great career opportunity which I ended up getting and to this day I continue to thrive in.
My life post-school consisted of being a bit of a workaholic. The job I got was selling insurance for a company in Minnesota but with a territory covering two beautiful counties on the Central Coast, both of which have universities. Translation: That means I worked and studied hard (don’t think passing state insurance tests teaches you the slightest thing about actually selling or understanding insurance because it does not) and I played real hard on my down time. By this point in my life I had become a full on wine-o and loved practically any beer. I now had money to spend and a flexible job that gave me plenty of time to spend it. Life was good.
As I got older I had to work harder to remain fit. In my free time from work and socializing I took up hiking, then I found triathlons. I got hooked. Don’t get confused, we are NOT talking iron mans, we are talking sprint tri’s. They consisted of Roughly two hours of my day, a swim, bike ride, and run, and I was typically met at the finish line with a beer instead of a water. They were the perfect way to stay motivated to workout, and enough of an adrenaline rush to feel hooked.
If this life sounds obnoxiously perfect, it is meant to. I’m trying to paint a picture of invisible illnesses. From the exterior this life looks as good as any, maybe better.
Don’t get it confused, I have suffered my share of adversity. I am the child of a father who is a recovering alcoholic who later got hooked on pain medications after an injury. His pattern was to abuse substances, and then attempt recovery.
This has been a lifelong battle my family has quietly fought.
I have also had my fair share of heartbreak from boyfriends.
I have made poor choices that have landed me with less than ideal consequences.
I’ve lost family member and friends I care deeply for.
I’ve tried and failed at a number of endeavors.
I am not everyone’s favorite person. I can be bossy, pushy and have been referred to as pretentious.
Overall though, I try to be a kind person who makes good choices and treat everyone with respect and understanding.
I have a chronic illness.
I have an invisible illness.
I have a kidney disease called IGA Nephropathy.
(update from 4-8-2016: I’ve now been diagnosed with multiple autoimmune conditions in addition to this original diagnosis because when it rains, it pours right?)
We discovered this disease on June 4, 2013 after months of trying to diagnose why I had such elevated levels of blood and protein in my urine, and why I had gotten a cold that took almost 6 months to go away.
There is no cure for what I have. From what I understand, we will watch for “flare ups” my entire life and do our best to protect my kidneys in hopes of avoiding the 60ish% chance that I’ll need a kidney transplant. A transplant will not cure me either, it will simply give my body a new kidney that it can damage.
If I had to guess I’d say this disease became active inside me sometime in 2010. That was the first year a doctor noted my elevated blood pressure. I assumed my blood pressure was high because of the new, stressful sales job I was in, and maybe from the few extra pounds I’d started carrying around with me. Then I started to notice that on my frequent trips to Minnesota for work, my feet and ankles would swell to a point where I couldn’t wear my shoes. I thought I must be eating out and drinking too much on these trips and also that I was sitting far more than usual which was somehow messing with my blood flow causing the swelling? I mean I had no idea what was going on. I had began suffering frequent headaches and my overall health seemed to deteriorate a bit. I frequently had low energy levels and started to lack motivation.
So why are you here?
Why should you want to be a part of my journey? Or even share yours with me?
In my journey I have felt alone. Misunderstood. Abandoned. Loved. Supported. Judged. Admired. And the list goes on and on and on…
Have you felt any of these emotions? Have you wished for a safe place to share them? Or to talk to someone who has been there? Someone that might possibly understand what you are feeling?
If you are lucky like I have been, you are surrounded by loving, caring people that truly want to be there for you.
The catch is that unless someone has been there, experienced what you are experiencing, how can they be the support you need?
How can our loved ones support us and be there for us at the times that we don’t even know what we need?
If you aren’t so lucky to have the support I do, you need this even more!
I want to share my story, my lessons, my struggles, and especially my successes in an effort to help others through their own hard times (whatever those may be), and be a constant reminder that LIFE KEEPS ON!
My mission statement for this website:
To use this website as a platform to reach anyone with a chronic illness, invisible illness, anyone who has required a medically necessary termination of a pregnancy, or has miscarried a baby (or multiple miscarriages God forbid), an injury that has altered their life dramatically, anyone who has had to navigate doctors and insurance companies, or anyone who has felt lost or alone in fighting any struggle, and the caregivers, and loved ones who support people living these uphill battles; to act as a safe place for these people to share, learn, grieve, celebrate, and support others through life’s challenges. I want to share mine and others story, lessons, struggles and especially successes in an effort to help others while simultaneously having a safe and comfortable outlet to journal my journey and remind people that LIFE KEEPS ON!
Thank you for being here and I hope you find whatever it is you need here.