My Normal; it’s Not Your Normal

What is your definition of normal? Would you like mine? Well, mine is not going directly to college and getting a BS, BA, MS, MA, MS, PH.D, or any other degree. What about working a full time job? Well, that used to be my new normal, In fact its still my sisters normal, but for me, it’s far from my normal.

Don’t get me wrong, I grew up in a household with two college graduates, One went to Law school. I was taught as far as I remember that you needed to get a College education to make it in this world. This was constantly reinforced through high school. Both my older sisters graduated. One obtained her teaching credential after high school.  The other received her BS in Business at UCI. My path was different.  I was accepted to Fresno State University following graduation from high school.  I accepted; but my normal had other plans.

I know I’ve written this before, but I never thought I’d be a sicker adult than I was a child.  I was dead wrong. I was only able to be on campus at Fresno State one semester before I was forced to resign. I than applied and successfully was enrolled with Arizona State University online. Unfortunately, both times, my normal forced different plans.  My normal was a series of stacked medical issues, hospitalizations, medicines and all the related issues.  It has now been five years and I only have 3 semesters.  At this rate, my normal will be graduation in 2100 or so.

ASU was amazing, extremely helpful and eager to help me to be successful. Unfortunately, my health decided to once again interfere with the normal life. When I became sick in January 2013, I had no idea that it would literally turn my life upside down. Yes, I was overdosed with steroids, suffered steroid toxicity and severe Cushings syndrone.  I also developed secondary diseases, some temporary and some permanent damage from that, but I never thought it would change my path forever.

It made me realize that the cookie cutter path that many “healthy” people travel  will never be the path that I would follow.  I call it my “NEW NORMAl.” Trust me, I would love to work full time and provide for my future family.  Physically, I can’t.  I was raised to be self sufficient and contribute to society.  I will always try to do so – if my new normal lets me. I grew up being taught that you need to contribute to society; work, volunteer, be a good person . . .

This morning I woke up at 3 a.m. while receiving my every 3-week IVIG infusion.  C.Diff. was back, severe nausea and the other nastier side effect.  Once again, my new normal struck.  This week began incredible, I started to see a personal trainer and had my 3rd appointment with him.  Things were looking up, I felt stronger, encouraged and maybe was doing something regular normal.  But my new normal had other plans. The truth is that being a chronically sick adult is hard; it upsets the best laid plans over and over and over again.

Sick adults are treated very different than sick children; many think we are a burden on society.  We didn’t ask for it,  we didn’t cause it, it just is. I wish I was like my sisters and other family members. Sometimes I feel like they got the great end of the stick – the one with the candy on it.  I got the other end, just a stick and it kept hitting me over and over and over again. I wish that my health wouldn’t be this unpredictable.  Its hard to explain to someone who doesn’t know what its like, but thankfully my parents get it.

When I was 18, I was super sick. I would sleep 20 hours or more a day was even too weak to walk to the bathroom. We went from doctor to doctor, but no one had any answers to why I became so much sicker. This also took a toll on my family. I know everyone was on edge and about to snap and snapped. It even got to the point that my sisters were convinced after seeing the stress this was doing to everyone, that I was faking it. That went on for about a month, I was angry, sad and most of all – hurt. No one knows how much it actually sucks unless you walk a second in my shoes, my normal, not theirs.   This search led to great news, not, a new diagnosis of a rare immunodeficiency disease and in fact I was about a month away from death if I wasn’t treated.

This is the thing, no one can truly believe that someone can be this sick, this look and over and over again that we must be faking it.  I’m sick of the dirty looks and people yelling at me when I use my handicap plaque because I don’t fit the mold of what they think a disabled person should look like. I am sick of getting asked, “so when will you finish school or get a job.” My answer is simple, when I am able too.  I wake up fighting for my life everyday and if if the most I did today was go to the pharmacy, pick up my meds, and breathe – I would consider that a win. Some weeks like this, I did 2 personal training sessions and thought, wow, I’m normal, and not my normal.  My new normal reminded me last night that I’m not.

This is my life. I got dealt a crappy hand and I am doing my best to live in a world not made for us. I am blessed to work with a nonprofit that helps medically fragile children and their families with various type of financial assistance.  I speak on compassionate and palliative care.  I blog, sometimes, with the hope that my experiences help others.  I might not be back in school yet, but I will. My goal is to continue my education one day when my health will allow me too.   In the meantime I will continue to be an advocate for those whose normal is not your normal.

 

6 thoughts on “My Normal; it’s Not Your Normal”

  1. I know the today was hard. You rocked your fitness training this week. You’ll rebound baby. I know you will. I loved your blog with all is raw truth and continual hope.

  2. Hi. I heard you on npr. You have a wonderful smile and disposition, despite all the hardships. Thanks for sharing your incredible story with the world.

  3. I am so glad I found your blog! I have been up all night searching the internet for information. My beautiful 20 year old daughter was born with complex cyanotic heart disease including Hypoplastic Right Ventricle and Tricuspid Atresia (Along with 7 other defects). Happy news! She has found someone amazing that accepts her health and understands that she will not be able to have biological children. But we need help! Her pediatric Dr just dropped (transitioned) us to adult care. Bailee is getting married in December and we can not find a gynecologist that knows anything? What do you do? Who have you found? Are there Drs out there that specializes in this? Or does your cardiologist take care of birth control for you? Any insight would be greatly appreciated. I am so happy for you and your fiance! He sounds amazing and I hope you have a beautiful life together! 🙂

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