Friday 23 February 2018

The Beginning

It's hard to believe that someone's life can be changed, altered, or flipped in just one day.  Little did I know that when I got my diagnosis, I wouldn't just be on the next page or chapter.. my life became a different genre, foreign to what I had ever known before.  If you know me well, you'd know that I HATE change.  Due to that, I have the same bedding on my bed from when I was just a toddler.  Still, to this day, nothing is more comforting than my white blanket covered in purple lilacs.  My mom would tell me that it's time to replace it because it's getting old and has nail polish stains on it... Personally, I think Janay's artwork builds character and gives it a unique look. With that one, minor example of a major part of my personality, you can imagine how clueless I would have been when I was experiencing "a weird rash" and "lots of bruising" that has never happened prior to this.  That was just the beginning.

The last of the bright, colourful leaves were hitting the ground in the final few days of fall.  My dad was busy with his 6-man football team as he held practices every morning before school, preparing them for the provincial run of the season.  His love of football radiated and became contagious.  I completely blame him for my obsession and love for the game.  According to my baby books, I had been to a provincial final in nearly all the sports before I was a year old.  I likely had no idea what was going on in any of those sports aside from football.  I was the pudgy baby on the sidelines that would raise her hands and cheer as soon as the Carrot River Wildcats would get a touchdown.. which was something my dad took pride in because his coaching skills were working on the field.. and off the field. 

It was late October when my dad was holding down the fort while my mom, who is a Registered Nurse, was away at a Diabetes conference in Montreal, Quebec.  Of course, as a nine-year-old, my biggest concerns were how on earth dad was going to do my hair (because it wasn't wacky hair day this time..) and what I was going to be for Halloween.  Those worries became the least of my problems.  I was new to the high school as a grade five student at the time when I noticed this really weird rash so I called my mom.  

"Is it bumpy?" No.
"Is it itchy?" No.
"Is it on top of your skin?" No.

She was puzzled and encouraged me to go to the doctor.  Although I had this "rash" and more bruising than normal, neither my dad nor myself were too terribly concerned because I didn't feel or look sick.  We actually decided that it was kind of interesting how my skin was becoming full of speckles.  That's when my little sister, Janay, decided to state her opinion on the matter. 

"Daddy, Tianna needs to go to the doctor.  Something is wrong." 

Of course, we knew it wasn't normal but we did not see the urgency until Janay, seven-years-old at the time, seemed so convinced and set on what the next steps needed to be.  Finally, we went to the doctor. My "rash" got the name petechia.  Basically, I had tiny blood vessels breaking under my skin. If you imagine dotting yourself with a red pen, that is what my petechia looked like.  My doctor ordered an urgent CBC (Complete Blood Count).  My results had the letters "LL" beside one of the counts...

LL - Platelets - 1

This meant that my platelet count was dangerously low and I was at an extreme risk of a potentially fatal bleed.  Most people don't even know what platelets are; I know that I didn't at the time.  Basically, the blood is made up of white blood cells, red blood cells, plasma, and platelets.  Platelets are what help our bodies clot.  They help to heal bruises and cuts.  When someone's platelet counts are low, they are at a higher risk for bleeding.  I didn't understand what the big deal was at the time because everybody will bleed if they cut their finger or pull out a tooth.  I learned that the biggest concern is not the external bleeding so much as the internal bleeding.  

Platelets are measured in thousands.  A normal person has 150 000 - 400 000 platelets (150-400).  I was at 1000 platelets (1).  This meant that a sneeze or a headache could cause my brain to bleed.  Fortunately, my doctors knew exactly what to do and how to treat me.  

Once we received those results, the game plan was made quickly.  No matter how many times the X's and O's got rearranged, this game plan did not make sense to dad, or anybody except the doctors.  Dad called my mom to tell her what was going on. 

"Tianna's templates are low"
"Templates??"
"Yeah... like she could bleed to death"
"OH! Platelets! Her platelets are low!"

Needless to say, my mom has a much better understanding and wider vocabulary when it comes to the medical field.  Dad and I packed a bag with some clothes, toys, and homework before we hopped into the little green car that was named "Old Pam".  The car got us from Carrot River to the Prince Albert Hospital.  Dad grabbed my bags and placed his hand gently on the small of my back.  I cannot emphasize enough just how gentle he was.  Honestly, I don't recall him even having his hand there because he was so gentle yet there was a bruise on my back, exactly where he had his hand, in the shape of his hand.  Hopefully, that will give you an idea of just how fragile I really was. 

I remember all the nurses and doctors busying around with other patients, weird noises, beeps on machines, children crying... just about everything you'd expect to see in the pediatric ward of a hospital. Then it was my turn.  The staff turned their attention to me and it was time for my IV (intravenous).  I had only had flu shots and immunizations prior to the bloodwork earlier in the day.  I didn't think anything of another needle because I had never had any issues.  Boy was I wrong. 

The nurses tried and tried and tried and tried to get an IV in me but nobody could get it.  I have a pretty high pain tolerance but by this point, I was hysterical.  I still have marks on my arms and hands from where they poked me that day.  Dad kicked everybody out of my room because he knew how much pain I was in and how scared I had become.  I recently learned that my dad had a similar experience when he needed surgery on his shoulder which explains why he acted the way he did.  About an hour later, the staff came back to try again.  As soon as I realized, I hopped up off the bed and ran into the bathroom in the room and locked the door.  There was no way I was getting poked again, I thought. 

Eventually, a nurse named Cagey got my IV into my right forearm.  I named my teddy bear after her. At the time, she was my hero (next to my dad who tried to save me from them). 

The rest of my stay at that hospital was kind of a blur.  I remember how difficult it was to do my homework because I couldn't use my dominant right hand.  Believe it or not, my dad wouldn't do it for me even though his dominant left hand worked perfectly fine! My sister and grandparents came to visit the next day.  Janay made sure that she found my DS and a bunch of games so that I wouldn't be too bored.  The best part about my hospital stay though was the ice cream they gave me at every meal.  Hospital food is "wannabe" regular food, in my mind, but ice cream is good no matter where you are or what time it is.  My mom came home from her conference and stayed the second night with me in the hospital, allowing dad to get a better sleep in a much comfier bed.



Bloodwork the final day showed that my platelets had responded to the IVIG treatment (Intravenous Immunoglobulin) and I was free to be discharged.  Although my platelets returned to the "safe" zone, I never reached the low end of normal and I am still yet to do that.  



After this episode, we learned a few things:

  1. The body does not have anything called a template
  2. The football team will survive if Coach Schmaltz leaves an intern and the drama teacher to coach a game
  3. "Old Pam" can safely travel 179 km to Prince Albert.. and 179 km back home
  4. Dad should focus on sports, mom can focus on health-related issues
  5. Needles suck but being sick sucks more
  6. Ice cream is the best medicine (I already knew that.. just proving my point)
Enjoying my ice cream!

I was diagnosed with ITP (Idiopathic Thrombocytopenia Purpura) and I am quite sure my response was, "English please??". 

Never in a million years would I have thought that the best way to describe me would be as "fragile".  
ITP is an autoimmune disease that has become chronic for me. Basically, my immune system is attacking my platelets because something has tricked it into believing that my platelets are foreign invaders. Nobody knows the why behind it. 






I am planning on writing about my experiences, what it's like to live with an autoimmune disease, and how ITP has impacted me as a way of sharing something that is kept in the dark and as a way of coping.




-Your fragile friend, Tianna


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