When it Rains, it Pours

Hey everyone, I'm alive and well.

HA just kidding.  I haven't quite figured out what the definition of "well" is but I am determined to do so.

This blog is long and full of content but totally worth the read - bear with me!

Here's the scoop:

Since my reaction in January, I have been living at home.

During my reaction and the following week, I had felt trapped in my basement suite and I had really began to appreciate the saying "there's no place like home".  If I was going to be sick, I wanted to be sick in my own bed in my bedroom, not in my basement of my place in the city. 

The only reason Mom had refused to take me home earlier was that we had to be absolutely sure that the Nipawin Hospital would carry the right IVIG product in case I needed another treatment.  (She may never admit to this but it's also a challenge to get Mom out of the city... she's what you would call a shopaholic...).  We had to eliminate all the chances of another reaction.  

Finally, Nipawin received their order of IVIG product and Mom said we could go home.  Mom and I packed up most of my suite right then and there.  To be completely honest, I sat on the couch and ate Hickory Sticks while Mom did ALL of the packing.  Our 2003 'Granny Van' was as packed as full as it could be.  

We arrived home and that's honestly as much as I remember aside from sleeping A LOT.  Maybe I don't remember because nothing really eventful happened or maybe because I just don't want to remember.

I do remember how excited I was for the February break because I found out that my family on my Dad's side was coming to spend the week with us.  Finally something that I could look forward to! 

I was getting exhausted as the days went by and I really wasn't doing anything at all... (if you ask my family, I was just being a 'lazy teenager' but my ITP served as a deadly excuse for all the laziness I wanted).

I decided to go to town to get bloodwork.

Platelets - 20 - LL

For my particular case, 20 is in the treatment zone but it is not life or death.  Dr. Pearson called and we discussed my options and what to do moving fowards.

"This one is up to you, Tianna.  It depends on how you are feeling.  I can book you in for treatment tomorrow or we can wait this out."

My decision was already made.

"Treatment, please.  I can't stand being this exhausted all the time."

So that was that.  I was told to go to the Nipawin Hospital the next morning for treatment.

Mom and I packed some essentials... my laptop, some chips, y'know, whatever will help us get through another treatment.  It took a little while to get all set up because we had to go through how this whole treatment thing was going to go in order to avoid another reaction.

Our Plan:
- Slow the rate of the blood product down (it may have been too high in comparison to my actual weight rather than the average "adult" weight they go by)
- Smaller bottles (an overall less amount of product may reduce the chance of a reaction)
- Different type of blood product (gamaguard instead of gamunex)

We were sure that we had eliminated all possibilities of a reaction so we decided that it was time to proceed with treatment.

I absolutely hate IV's but that doesn't matter in my life.  Once my nurse got my IV in, she hooked up my first of eight bottles of gamagaurd.  This treatment took over eight hours to complete and I was scheduled to return the next day for my second course of treatment.  Because of my hate for IV's, the nurse allowed me to keep the IV in my hand for the night.

I returned home and was greeted by my ENTIRE Schmaltz side of my family.

I was excited to see everyone but totally exhausted from my treatment (and slightly discouraged and annoyed that it took 8 hours and I would have to miss out on my family for another day).

I was hugged and kissed and asked a ton of questions.

"How was treatment?"
"Did they get the IV in okay?"
"What are your counts like now?"

After a little while, I went to my bedroom to lay down.

I felt weird.

That's the only word I know to describe what I felt.  I didn't feel sick but I didn't feel normal so I went out to the kitchen and sat at the table with my Grandma, Mom, and Auntie.

"Mom, I don't feel right."

I was sitting on a chair, leaned forward with both my hands on my head.  Then it started to happen.

My jaw started to tremble uncontrollably.

I slowly put my hands down and looked at mom.  Then the tears started to flow.

In that moment, I knew that I was having another reaction.

Unfortunately, my little cousin walked over to ask my Auntie a question at the exact time this all happened which left her confused (and very intrigued because health topics have always interested her).

Mom helped me back to my bedroom and got me to lay down (and as most of you already know, my bed is easily my favourite place on the planet so my Mom didn't have to tell me twice).  So far it was just the trembling but shortly after, my muscles were beginning to go into 'fight or flight' mode too.  Mom called the Royal University Hospital to find out if Dr. Pearson was on-call.  Thank God he was.  Mom handed me the phone once the call was directed his way:

"Hello"
"Hi Dr. Pearson, it's Tianna"
"I know, what's going on?"

Clearly, his response was enough to show how wild my platelets have been and how much work he had been putting into my case.

Mom, Dr. Pearson, and I talked about what to do.  Dr. Pearson recommended certain medication to give to me while I was having my reaction.  Mom followed his directions which did end up easing my reaction.

While on the phone, we also discussed what we should do about the next course of my treatment that was supposed to take place the next day.  It was decided that there was no way I could get another dose of IVIG ever again so needless to say, I did not return to the Nipawin Hospital.

"Tianna, maybe we could keep doing IVIG treatments and then giving you the medication that Dr. Pearson recommended.  That way if you react we can deal with it right away."

I responded with,

"I would rather die than have another reaction again."

After our phone call with Dr. Pearson, I laid in my bed and rested for a couple of hours before returning to the living room.  Mom proceeded to take the IV out of my hand.  I knew that she was a nurse and had experience but this did not make it any easier to watch.

My counts were up by about 15 platelets after this course of treatment, leaving me with minimal energy levels.  I got through my reaction and I got through the February break quite smoothly but I was feeling quite hopeless with low levels and now, no way to treat my ITP.

***

Bloodwork was happening every single week.  We wanted to catch a pattern and be ready for any significant drops.  My symptoms were all out of whack.  

Petechia all over resulted in higher counts than normal

Excessive bruising resulted in higher counts as well

The whole "No news is good news" should've been "No symptoms is good news" but that statement didn't match my case either.  

I was exhausted ALL the time which really wasn't an indicator of anything anymore.  My "As needed" on my lab req. became always.  I always needed my blood counts checked and I always needed to be on top of everything.

My Platelet Graph since December

Since my first big reaction, I was put on Dr. Pearson's "ITP Check-in List" meaning that he would call me every Thursday to check in on me.  After I reacted a second time, he gave me his cell phone number.  He texts me often to check in on me and I text him whenever something about my health changes or whenever I have any questions.

Again, I'm likely one of the only 18-year-old girls who tells her hematologist almost as much as her own best friends but that's just one of the many things that makes my story so unique.

***

In the middle of March, I went to Wynyard to see my boyfriend and his family.  While I was there, a huge snowstorm hit, making it almost impossible to go anywhere, even across town to the hospital.  The night before, Carson and I were talking when he noticed this red dot in my eye.  It was a single spot of petechia that wasn't new to me.  This exact dot would show up whenever my counts were low.    Then after looking closer, we noticed that there were petechia all around my eyes and on my eyelids.  I immediately texted Dr. Pearson and told him about this dot in my eye and the other petechia.  He insisted that I go for bloodwork in the morning.

I got my bloodwork taken but they told me that I likely wouldn't get results until the next day.

*Side note: Every lab is different.  Some labs will tell you your counts when they know, some will print you a paper, and some won't tell you anything at all.*

I got back to the house and texted Dr. Pearson saying that we wouldn't have results until the next day. He told me that with the symptoms I had described, it would be best for me to start treatment.

Now I probably have you all confused because I just finished stating how I can't have another treatment.  Dr. Pearson and I discussed other types of treatments and our Plan B treatment was a steroid.

Prednizone is the steroid that everybody talks about for ITP (and a multitude of other things) but I was refusing for a few reasons:

1. I got told that I was going to have to try prednisone back when I was still enrolled in University - not the best time to add yet another thing to my already overflowing plate
2. It causes sleep problems which I already have enough of without the prednisone - believe it or not, I actually have a difficult time falling asleep and have had this problem since I was a baby. Sometimes my family calls me nocturnal and honestly, they aren't far off.
3. It causes mood swings that can be extreme - I already experience those and I don't think anybody could tolerate me if they got any worse
4. It causes acne which I have been fighting for years and finally have been on top of recently - you gotta be crazy to expect me to jump back into that battle again
5. It causes stomach issues like nausea and bloating which I had been dealing with for the past 6 months - again, you gotta be crazy.

Basically, there are so many side effects that I had already had been dealing with making it so NOT worth it. 

Dr. Pearson had arranged for me to try a 4 day course of Dexamethazone which is a steroid similar to prednizone but done in a shorter time frame.  

I went to the Pharmacy and picked up my course of Dexamethazone.  I was instructed to start taking it at night and then take it for the next few days.  

The next morning, I texted Dr. Pearson about my insane mood swings and weird appetite.  He told me that it was completely normal and basically to expect the unexpected.  

I made it home and explained to my parents what had been going on, basically warning them about my emotional state.  Mom asked me if I would like to go to my cousin Mackenzie's NE hockey game in Nipawin the next night and I literally responded with:

"Mom, I don't know if I will be socially acceptable by tomorrow night."

I didn't know what to predict.  I had another laugh/cry attack on the couch that night which entertained both of my parents.  Aside from that, my mood swings leveled out and I convinced myself that I should go to the hockey game to support my cousin.

Once we got to the rink, every loud sound made me tear up and want to cry.  I was a nutcase but trying to play it cool.  I was thankful when the game was over, even though I enjoyed it.

I took my last course of the steroid and then waited a week to get blood work.  

Here's the pattern:

March 16th, 2018 - 29

March 23rd, 2018 - 74

March 27th, 2018 - 123

April 3rd, 2018 - 103

The pattern continues but basically, the Dexamethazone worked.  It sent my counts up.  Although they still fluxuate, my counts have been more stable at a higher count.  

***

In May, we travelled to Eatonia for my cousin's First Communion and Conformation.  Despite my counts staying high, I wasn't feeling very well.  This time it was my stomach again.  

(How cute is Shayla though??)

To give some backstory...

I have been the biggest fan of milk products FOREVER.  I love basically every milk product.  For the past few months since my H. Pylori was cleared, I had been in denial.  Every time I ate a milk product, my stomach would kill me.  The stomach ache got worse each time but it was tolerable. 

Until this.

Basically, Mom, Janay, and I were travelling to Eatonia.  We left later in the day which gave me time to go to my grandparents and have a milkshake with Grandpa Dan (Grandma Myrna makes the best milkshakes ever).  Anyways, once we finally hit the road, I was in the very back of the van, Mom was catching up on some work stuff in the passenger seat and Janay was driving.  We were about 10km outside of the Choiceland Co-op where we usually stop to fuel up and/or use the restroom.  Unfortunately, I got the typical stomach ache I usually get after eating or drinking a milk product.  Except this time, the stomach ache was unbearable.  I started to sweat and get lightheaded.  I made Janay turn down a dirt road so that I could get out and go to the washroom.  

Needless to say, I am not in denial anymore.  It took me until I had to LITERALLY squat, on a dirtroad, in a rain storm, to know that I am CLEARLY lactose intolerant.  

Aside from that pitstop on the way down, everything else went as planned.  My stomach continued to bother me because I still ate everything that was served, lactose or not.

After that weekend, we returned home and I worked to cut out lactose as much as I could without using pills.  The following weekend we were to drive to Kitscoty, Alberta for my cousin, Jaxon's graduation.  A couple of days before we left, I came down with a brutal cold.  Of course, any hit to my immune system results in a hit to my platelets.  My platelets dropped from the 100 range to the 60-70 range.  Don't get me wrong, 60-70 is still good.  The amount I dropped by is what bothered me.     Aside from me feeling like shit due to more than one reason, we got through that weekend as well.  

I went to Wynyard again when I got back home from the grad.  When I arrived, Carson handed me lactose pills. (Again, so thankful for Carson!!)  Ever since then, I have been using my pills to get me through meals that have lactose hidden inside of them.  The thing with changing a diet so suddenly is that it's hard to remember to take pills before eating specific foods because I've never had to before.  I often forget my pills and have to make people turn around so I can go back and get them or I run out and forget to pick up more.  It has only been 2.5 months of cutting lactose out but it has been a HUGE change in my life.  

(PS- if you ever see me not eating much or at all somewhere - it is likely because I forgot my pills and can't take the risk of getting sick - I'm embarrasingly forgetful)

***

To get you all the way caught up to where I am today, my counts have remained stable.  I am still lactose intolerant and feeling much, much better after cutting it out of my life.

There is one health issue that I haven't mentioned before that has recently come up.

Since last summer, I have been having troubles breathing.  I gasp for air.  I feel like I can't breathe so I gasp or yawn to feel relief.  Originally, I blamed it on my back,

Something must be out of place causing my breathing to be funny

Then I blamed it on a cracked rib,

I have all the symptoms of a cracked rib, it must be that

Then one evening while I was in university, Mom came over.  I found out that I had a scholarship deadline in literally an hour and I hadn't even started applying - Yes, I am an extreme procrastinator on top of being very forgetful!  Instantly I couldn't breathe.  I was gasping for air.  I couldn't breathe as soon as something began to stress me out.  

Anxiety, I thought

Finally, I went to a doctor about it and she sent me to get a Spirometry test to check my lung function.

After getting my test done, I was sure that I couldn't breathe properly because who on Earth can exhale for so damn long?!

I got a call from my Nurse Practitioner saying that she wanted to see me.  Basically, my breathing got significantly better after taking the blue inhaler.  My N.P. told me I have asthma and it has been flaring up, therefore I need to be taking my blue and orange inhalers.

I got diagnosed with asthma approximately a month ago.  I had been taking my inhalers every single day,  WAY more than prescribed and getting no relief.  

I kept saying to people,

I don't think I have asthma, I have anxiety.  These inhalers aren't working!

On Wednesday, I went to work.  I was working away when I felt like I couldn't breathe so I took two puffs of my blue inhaler and I reached for my orange inhaler when nothing came out of it.  I quickly walked to my boss's office and asked if I could run to the Pharmacy to get a new inhaler.  With his approval, I rushed over to the Pharmacy and told them what had happened.  The pharmacist was filling me a new inhaler when she asked how many times I use it a day.

"Lots..."

"Like more than twice a day?"

"Yes.. lots..."

Basically, the pharmacist told me that I've been overdosing on my inhalers and that I need to go to the doctors office and book an appointment because clearly my inhalers aren't solving my problem.

I get back to work about 15 minutes later and call my mom to tell her what they had said at the Pharmacy and to tell her that I still can't breathe.  She told me to book an appointment but I insisted that she call to book me in.  

"Go to the clinic now, I got you an emergency appt"

So I texted my boss saying what was going on and rushed over to the clinic.  My N.P. looked at my charts and told me that my lung function and oxygen levels are normal.  The inhalers did help during my Spirometry test but my baseline levels weren't a concern to begin with.  She proceeded to do some more testing and asked me questions, diagnosing me with anxiety.  

Ironically, the testing alone made me anxious.

She prescribed a pill that is strictly to help with anxiety, sleep and apetite.  I was also instructed to stop taking my inhalers because they were increasing my anxiety.  

I started my anxiety medication on Wednesday night.  I didn't know what to expect but it knocked me out for 13 hours.  I spent the rest of the day on Thursday barely being able to function.  I had negative amounts of energy.  I spent the entire afternoon napping.  My boss told me to take the day off of work to rest but I was still supposed to babysit that evening at the lake.

I asked my sister if she would like to go for ice cream in town, hoping that the ice cream would give me more energy.  She agreed to drive if I paid.  It was a deal.  

Mom had bought me Regular Strength lactose pills instead of Extra Strength so I took 4 pills with me for my ice cream, assuming it would be enough.  It wasn't.  

As soon as I finished my ice cream, I looked at Janay with panic in my eyes and said,

"Janay, we need to get home, NOW"

So I quickly paid and we got in the vehicle to get home.  I kept telling Janay to drive faster because I felt SO sick.

Of course, Janay decides this is the time to become an animal lover!  She slows down in the middle of our road and says in a cheerful, loving voice (like the true 'animal lover' she really is),

"Tianna! Look at the cute calf!"

The animal loving side of myself did not shine through.  I didn't care about the calf or anything, for that matter, except the toilet.

We got in the driveway and she was slowing down to park when I jumped out and ran into the house to go to the washroom.

My dad, standing on the front lawn must've almost fallen over.  I hadn't moved that fast in... well.... ever.. and I jumped out of a moving vehicle.

To put this into perspective, when I get sick because of lactose, I'm usually sick for a couple of hours.  In this moment, I had 10 minutes to be sick before I had to leave to get to the lake on time to babysit.  Unfortunately, life doesn't work like that.  Janay was my only hope so she got in her vehicle and took off to go babysit for me.  

I finally started feeling better around 8:00 that evening, aside from being overly exhausted.  I finally got to bed and slept perfectly fine until 4:00.  I felt so nauseous.  I phoned my mom and said,

"Mom I need a bucket, I'm going to puke"

She came running with a bucket and I threw up.  After awhile I fell back asleep.  

I took the day off work today because I have felt so gross and drained.  

Here are some things I have learned:

1. IVIG reactions are absolutely brutal
2. You can still eat ice cream when you are lactose intolerant (THANK GOD), but you better damn well be sure you have the right kind of pills or easy access to a bathroom.. not kidding
3. I will never have just one health problem... I will have multiple and they will all hit me at once
4. An excessive amount of snow makes it really difficult to get across town especially when you have to help pull other people out of snowbanks in order to get past
5. Always check the lab's hours, especially on a snow day
6. Dexamethazone is kinda totally random and fun (but I don't want to have to do another course of it)
7. Mom can get out of bed, into the kitchen, and back to my room within 30 seconds when I call her saying I'm gonna throw up - pretty speedy for a not-so-speedy person! 
8. It is okay to take a day or two to myself to rest and recover
9. My week wouldn't be complete without a text message from my Grandma Colleen saying, "Counts?"
10. Again, I have some of the best people in my life supporting me

Basically, my life has been chaotic since day one.  If it's not one thing, it's another.  I've been trying to keep busy because it distracts me from what is going on inside my body.  

I recently got a job (like I've been talking about) and it was really scary to make such a big commitment after so many months of being unpredictably sick and unstable.  Right now, I might be as healthy as I ever will be so I am taking advantage of it.  It means a lot to me to have gotten hired because of how sick I have been.  I am simply someone that my employers are taking a chance on, and I can't thank them enough for that.

Again, thank you to everyone who has been supporting me.  This journey is a wild one but I wouldn't be gettting though it without all of you.  

Don't worry, my story isn't over yet.

Your fragile friend,

Tianna

Rock Bottom

Brace yourselves.  This is when shit hits the fan, big time.

The rest of high school was uneventful.  I got through my classes, achieved high honours, and even had the privilege of giving the Valedictory Address at my graduation in June of 2017.  The final months of high school were filled with plans for my future.  Scholarship deadlines were left, right, and centre.  I was stressed out but for a good reason.  I was exhausted all the time but I was convinced that it was due to the amount of weight that I had on my shoulders.  Anyways, at the end of August 2017, I moved into my basement suite in Saskatoon where I would be living while attending the University of Saskatchewan.

Grad 2017

I had my class schedule, my textbooks, and my bus pass.  I was nervous but I was ready.  My schedule was pretty sweet (Thanks Mom).  Mondays and Wednesdays I only had one class during the day that went from 10:30-11:20am.  This was perfect for me because I didn't have to wake up early. On Fridays I had class from 9:30-11:20am which was also pretty great because I was able to travel home and make it to the school just in time for the football games.  Tuesdays and Thursdays on the other hand.... 8:30am-4:30pm.  This day consisted of my two most difficult classes and two other ones.  Needless to say, these days were mentally and physically draining.  I did my absolute best to work through my exhaustion that had been following me since high school... still convinced it was the stress because everyone knows just how stressful university is.

At this point in my life, I had been going for bloodwork as needed.  Since being extremely fatigued is one of my most prominent symptoms, I had made many appearances at the RUH lab.  (Shout out to Rachel and Rayna Morris for conquering the tunnels with me... after getting lost multiple times).  Throughout the semester, my platelet counts had been slowly tapering off.  I sat most of my grade 12 year around 30 but they have been slowly dropping since then.

It wasn't until December 11th, 2017 that I dropped within the treatment level.  Because I had recently turned 18, the new treatment range for Adult ITP patients is anything below 30 (30,000).

Platelets - 20 - LL
Platelets - 19 - LL
Platelets - 15 - LL

My new adult hematologist, Dr Pearson, called me about my levels and discussed the game plan.  He wanted to treat me at Saskatoon City Hospital the next week for two days as an outpatient.  It seemed simple enough but because of the horrible timing, it really was far from being simple.  To put this into perspective, I was a university student preparing for 5 final exams and a Bio Lab final, along with all the final papers and assignments due.  My parents also just flew to Arizona that morning so there was no way that they would be able to be with me while I was in the hospital.

This is how everything went down:

Monday, December 11th, 2017 - Indigenous Studies 107 Final & English 113 Final (and make time to sign blood consent at the hospital in between my two, 3-hour finals and during the office hours...which is where I met Denise, the receptionist who I now talk to on a regular basis)
Tuesday, December 12th, 2017 - IVIG treatment
Wednesday, December 13th, 2017 - IVIG treatment
Thursday, December 14th, 2017 - Biology 120 Final

It was absolute chaos.  But thankfully, my family is very supportive.  My Grandma Colleen drove to the city Monday night and stayed with me in a hotel close to City Hospital.  Originally, I thought that I would be fine by myself.  I figured that I would either catch a bus, get a friend to drop me off and pick me up or just drive myself but little did I know, the nurses decided to leave my IV in my hand overnight, making my left hand extremely stiff and sensitive.  There was no way I would've been able to drive.. but that didn't stop me from offering after Grandma and I got lost in the city a couple of times.  My Grandma Myrna and Grandpa Dan also made their way into the city and went out for supper with us at the Pink Cadillac one night (I was in need of a milkshake and I think Grandpa Dan agreed that it was a good choice).  I received multiple messages and phone calls from family members and family friends, all checking up on me and asking if I needed anything.

As you all probably could've guessed, studying in the hospital was not very effective.  I was tired and distracted.  It was also difficult to do things on my laptop using only one hand.  I likely could have appealed to write my finals at a later time due to medical reasons but I decided that it was my best bet to write them while the information was still fresh rather than three months later.  It was such a HUGE relief to have that week over with, you have no idea.

My counts went up to 58 after that IVIG treatment.  This was exciting for the nurses and my Grandma because my counts were higher.  This was not exciting for me at all because it was ONLY 58.  I just assumed that they only went up that much because it was a shorter treatment and in the course of two days.  That was that.  I was released the day that my parents were flying home from Arizona so that night, we all went for supper at Montana's that was conveniently located right beside where I lived at the time.  They too were excited that my counts had gone up.

Once I was done my finals for the semester, I returned home for the Christmas break.  I was super pumped about all the good food but more pumped that I didn't have any homework, for the first time since summer!

We celebrated Christmas early due to my cousin's hockey schedule and my university schedule.  It really doesn't matter when Christmas is celebrated because Grandma Myrna always has the table (and 3 other tables, and both the freezers, and the counters, AND the cold storage room/former playroom) right FULL of baking.  I am not kidding.  It is awesome.

This Christmas played out a little bit different than I had expected...

It was supper time and we all filled our plates right full.  Everybody ate until they were full to the top.  The boys went back for seconds but made sure to add extra mashed potatoes (a family favourite).  The food all looked and tasted SO good.  I ate what was on my plate (which was less than normal and significantly less than what most people were eating).  I wasn't trying to be rude by not eating very much but I truly wasn't hungry.

My mind was telling me yes but my stomach was telling me no!

 I didn't have any dessert and I didn't have any goodies as the night went on.  The next morning I tried to eat breakfast (which I usually sleep through and miss anyways) but I got really full right away and didn't feel great.  I concluded that I just wasn't used to eating breakfast, therefore, my stomach was trying to adjust.  I tried again at lunch, still couldn't eat.  I tried not to make a scene as I nibbled away at this and that, feeling instantly bloated and sick.

It wasn't until we went to Eatonia to celebrate Christmas with the other side of the family that my eating patterns became noticeable and concerning.  My Grandma Colleen makes tons of appetizers for our Christmas meal: surprise spread, chicken wings, rollups, shrimp ring, spinach dip, etc.

I love appetizers.  Chicken wings are actually one of my favourite foods so obviously, I was excited to dig right in! But instead of getting sauce all over my face while filling my tummy with the delicious honey garlic chicken wings, I grabbed the smallest plate I could find and put two wings and a couple of crackers on it to eat.  My Mom and Dad both shot me looks that translate to "Tianna, smarten up!" but I couldn't help it.  I just wasn't hungry.  I couldn't even finish what was on my plate before feeling gross and over-the-top full.

Basically, my whole Christmas consisted of me being hungry, staring at food, watching other people eat, and getting told to eat more.  I wanted to eat so badly.

Despite my troubles with eating over the break, I thoroughly enjoyed seeing the family and having time off of school but unfortunately, all good things come to an end and I was headed back off to the city for Semester Two at U of S.

My grandparents & I

I attended my first day of classes, missed the second day due to an upset stomach, and spent the majority of the following day at a walk-in clinic on 8th Street.  By the time Friday rolled around, I was ready to go home and see if I could kick this stomach problem.

Again, my life decided to take an unexpected turn.  I knew my platelets had dropped to about 15 the previous week but Dr Pearson said, "If you're not worried, I'm not worried" and I wasn't because it wasn't out of the ordinary for me to be low and it really just wasn't a good time to be treated.  Saturday evening rolls around and Mom looked me over, checking for speckles and bruising.  Everything remained the same.  Mom then went to the 5:00pm church service.  She was back home within an hour and a half.  In that amount of time, my symptoms got significantly worse.  I had petechia everywhere.  My sweatpants bruised my legs... aaand my butt looked like it had been majorly scratched (from pulling my pants up).

"Oh my God. You are very low.  Pack a bag, we're going to Nipawin Emergency Room right now" stated Mom

Once we got to the ER, I was taken into an assessment room right away.  We did not wait long before someone came to see me and get the lowdown on my case.  I had hardly even started to explain my ITP history when Mom enthusiastically says,

"Look at her butt! Tianna show him your butt!"

So yes, he saw my butt.. along with every other person that happened to walk into the room while Mom was there because I was just so 'fascinating'.

Anyways, after I mooned a bunch of people, the lab technician came in to take my blood.  (Shout out to my future cousin-in-law Veline Griller for being awesome.  I'm a really tough patient, especially when my counts are as low as they were).  After she took my blood, we waited and waited.

Platelets - 2 - LL

This was the second lowest I had EVER been.  I was admitted right then and there for a two-night hospital stay.

To back up the bus just a little bit, when I was treated the previous time in my grade 11 year, Dr Sinha took extra tubes of blood for general testing before giving me the IVIG treatment.  The reason for testing before a treatment is that the IVIG is a blood product so it masks what your system is actually producing or carrying with whatever is carried in the product.  It takes approximately 6 weeks before the blood product is completely cleared out of your system.  Anyways, I found out two important things:

1. My blood type is A-, the second rarest type
2. I am IgA deficient

No, not the IGA grocery store.  I was confused too.  Our blood's plasma carries multiple different types of antibodies.  I don't have any IgA antibodies, making me IgA deficient.  This is extremely important because IVIG is a blood product and I need the type of IVIG that has the lowest concentration of IgA so that I don't have an allergic reaction.  I had always been treated with Gamaguard IVIG in the past because it was the type with the lowest concentration but because it has a bunch of different parts of blood combined from multiple donors, it is impossible to know for sure if it contains any IgA.  I always just hope for the best which has so far worked for me.

Nipawin hospital didn't carry Gamaguard IVIG but they did carry Gamunex IVIG which is the next best thing.  We discussed it with Dr. Pearson who approved the Gamunex IVIG and I signed the blood consent, fully trusting that this product would work as well as Gamagaurd IVIG has always worked for me.

Due to me arriving so late at the hospital, my treatment finally began at around 1:30am and continued for about 3-4 hours although I don't remember much because the medication they gave me through the IV before the Gamunex made me fall asleep almost instantly.  I do remember being thankful that there weren't any traumas that night because I was put in the trauma room in the ER as they were shuffling rooms around.  By the time I got my room, I was already done the first part of my treatment.  The next treatment was to start 24 hours after the last one started so I waited in the Nipawin hospital all day doing nothing but watching Netflix and snapchatting my boyfriend.  At around supper time, Janay agreed to go to the Venice House and get me some honey garlic chicken wings because I was craving them SO badly.  Like I said in a previous post, ITP lows make me extremely hungry but this time I couldn't eat because of my stomach acting up.  I ate about three chicken wings and looked at Janay, helplessly, and said,

"I'm full... I really can't eat another one, I might burst"...

Janay & I

"Tianna eat another one."

I nibbled at another one before insisting again just how full I was and getting up to go to the bathroom.  The wings were really good but I still just could not eat.  This was extra frustrating when my appetite is so big.

Eventually, my next treatment began and ended.  My blood was drawn the next day and I had gone up from 2 to 11 to 37.  Again, I was not happy.  I got released Monday morning, giving me time to get home, pack, and head back to the city for university again.  Mom was wary of letting me go back because of how unpredictable my platelets had been so she insisted on coming with me and staying with me at least for that week.  She helped me with cooking and cleaning and was willing to come to classes with me if I absolutely needed someone.  I felt much better and didn't seem to have any complications with my treatment.  I mentally noted that I didn't even get a headache that I usually get after an IVIG treatment.  

I had NO idea what I was in for.

Mom and I crawled into bed to watch Netflix for an hour or so.  At around 11:00pm, I got up to brush my teeth.  I remember standing in my little bathroom, in front of the mirror when I felt as if I was turning to stone.  Every single muscle in my entire body felt like it was hardening under my skin.  I called Mom over and asked her to feel if my muscles were actually hardening, to see if she could tell. She gently placed her hand on my shoulder and I screamed out in pain.  She tried another spot, the same reaction.  She got me to lay down on my couch while she asked me a few questions, like any nurse.. I mean, mom, would.  In the process of that, my jaw started trembling uncontrollably.  It made me giggle a little because I was nervous and had no control over what it was doing.  I looked like a child who stood outside in the winter time too long.  This stumped nurse Carlene, which lead to a call to the Healthline (811).  Mom explained my history and what was currently happening but they insisted on speaking to me.  They asked me the same questions and got the same answers then promptly said,

"Go to the nearest emergency room right now"

So my Mom repacked my bag (in about 30 seconds) and off we went to the RUH Emergency Room at around 11:30pm.  By this point, my whole upper body was shaking and trembling.  I was wearing a sweatshirt and Mom said that she could see the muscles in my abdomen moving around, making my stomach look like it was fluttering.  After sitting in the waiting room chair for a long time, the trembling relaxed but did not stop.  Eventually, around 3:30am, we were called to a different section where we waited to see the doctor on call.  I stood up and walked down the hall to that waiting room.  Just that small amount of walking was enough to make my whole body tremble and shake all over again.  A lab technician took me into a room to take my blood.  He was the third person in 9 years of needles to get blood out of my right arm.  My counts were still up higher than before and everything else came back normal.  I had to give a urine sample as well and similarly, everything came back normal.  The doctor finally called me into the assessment room.  We gave him the details of my situation and he was getting ready to do a physical assessment. He barely touched me and I was screaming in pain, worse than previously that night.  His face said all we needed to know: he was stumped which led to a call to Dr Peason (again).  Together, they decided that it was likely just a reaction to the blood product they gave me and that I would have to wait it out until the worst of the reaction is over.  

Mom and I arrived back at my place at around 5:30am, absolutely exhausted.  I crawled into bed, wincing in pain with every movement.  The pillow hurt the back of my head.  The sheets made my back and legs ache.  The blanket was unbearably heavy.  Everything hurt SO bad.

Always needing my mommy

Then the part that scared me more than I can even say... Mom had to somehow crawl into her side of the bed without moving a blanket, sheet, or pillow, and without making the bed shake at all... I was impressed because Mom isn't the most graceful person, but she got in without causing me too much pain.  The next part I was worried about was if she rolled over in the night or accidentally kicked or touched me in any way because I could not handle any contact.  My muscles were so tense.  You know how it feels after you do a really good work out? It was that type of sore... x100000000.  We woke up about 4 hours later because I had a much-needed appointment with Dr Pearson at City Hospital at noon.  Fortunately, he spent two hours with us, discussing everything and trying to get to the bottom of what was happening with my body.  

Up until this point in my life, my symptoms and counts had been so predictable.  I would always fall in the Fall, around October or November.  I would get petechia on my lower legs and have more random bruising on my arms and legs.  My symptoms were so consistent that I could literally guess a number and be within 5 of what my count actually was.  Everything was changing now.  I couldn't predict anything and I was dropping at random times.  

Dr Pearson also tried to give me a physical assessment with little to no luck because my muscles were still so tense.  The major thing to look for in an ITP patient is an enlarged spleen.  I often give Dr Pearson a hard time when he tries to feel for mine because it either tickles causing me to laugh or I am too sore to be touched.  On a side note, before I was released on Monday morning, I had an ultrasound for my spleen which confirmed that my spleen was enlarged which is what we thought was causing my appetite loss.  Often if a spleen is enlarged, it pushes on the stomach, creating unwanted pressure which can affect one's appetite.  In this particular situation, he was unable to feel for my spleen because of my condition but we did schedule a follow-up ultrasound to check things out.  He agreed and concluded that I reacted to the blood product they gave me.  We were unsure of why though.

Was it because it was Gamunex instead of Gamugaurd?

Did it contain IgA?

Was the rate of infusion too fast?

Was the dosage too high for my body weight?

There were multiple factors that could have caused my reaction.  Dr Pearson told me that he has seen tons and tons of reactions but none quite like the one I was having, which sparked a little more interest in my case.  He told me to alternate between 600mg of Advil and 600mg of Tylenol, every two hours.  

The next day, my muscles began to release a little bit but I still could not be touched.  Then, the headache hit me and it hit me hard.  I was maxed out on painkillers and they didn't even dent the pain.  The pain was so strong that it made me vomit uncontrollably for a few hours.  I remember crying to Mom,

"I just want to be knocked out"

Mom spent hours phoning different hospitals and offices trying to get ahold of Dr Pearson because this all started to happen right at the noon hour when every office is on lunch break.  We finally got ahold of him and he said that there was a different medication he could prescribe for me but it would make it much worse afterwards, meaning that it would help now but make me even sicker after the headache is gone.  Finally, I found a comfortable position, next to my pail, and fell asleep for a few hours.  In this moment, I learned that counting backwards from 100 by sevens does, in fact, work.  This nap was much needed because my headache wasn't nearly as powerful when I woke up.  

At this point, I had still only been to one or two of my classes and I was almost three weeks in.  I was stressed out about being this sick and I was beginning to get more stressed out thinking about all the homework I was going to have and how on earth I was going to catch up and be prepared for midterms that were approaching quickly.  That's when Mom popped the question,

"Tianna... do you remember the last time you have actually felt good and rested?"

"No, I can't remember"

That was all she needed to hear.  She called Dr Pearson and asked his opinion and he fully supported/encouraged me to follow through with what we were thinking.

I needed to move home and be with my family and get better once and for all. 

Or I could go back on vacation...

This was a really difficult decision because it truly felt like my ITP had defeated me.  I had been fighting for so many years, working as hard as I could to live my life and be successful despite everything that comes along with an autoimmune disease holding me down.  ITP has been a tough battle but I seemed to be in the lead for so long until this year.  Everything was falling apart.  I was embarrassed to tell people I dropped out of university because all throughout high school I had a 95%+ average.. I am capable of achieving things if I put my mind to it and work hard.  This reaction though, made me feel hopeless.  ITP really was in complete control of my life and now I'm just waiting to figure out how to take control again. 

Since this, it has been a waiting game.  I go for weekly blood work to monitor my platelet levels.  I haven't been able to get a job or do any extra schooling because my ITP has been too unpredictable to make an honourable commitment.  But don't worry, my battle with ITP is not over and this story has more to it.

Here are a few things I have learned:

1. I'm not a morning person...at all
2. I really like honey garlic chicken wings
3. Grandma Myrna has enough food to feed most of Carrot River and she likely won't turn you away if you stop in (10/10 would recommend Grandma Myrna's Coffee Shop & Bakery)
4. Just because your Grandpa Colin and Dad think that you have an eating disorder does not mean you do.. why on earth wouldn't I eat my favourite foods?!
5. Getting hospitalized in between finals was a super bad idea
6. I have become satisfied with final marks that are in the 50's.. a pass is a pass, my friend
7. If you ask any of the Nipawin Hospital staff if they've seen my ass, the answer is probably yes.. Thanks for that, Mom
8. Mom is really good at getting whatever food sounds good to me because at that point, we were desperate to get anything into me while we could
9. On another note, Mom is not capable of getting the inside fudge part of a DQ ice cream cake at 11:00pm.. unfortunately
10. Grandpa Dan likes ice cream almost as much as I do, making him the best person to have a milkshake with
11. My reaction was brutal.  I would rather die than go through that again.
12. I am capable of sleeping 18 hours a night for multiple nights.. a sick girl needs her rest
13. I have THE BEST people in my life

Even though there is more to my story, I'd like to thank Mikayla, Rachel, Rayna, Grace, Kaden, Shanelle, Eric, Ellie, Freya, Erin, Josh, and Miranda for taking notes for me and helping me to get my assignments in on time when I wasn't able to be there.  I'd like to thank all my family and friends for being so supportive and understanding. Above all, I'd like to thank Dr Pearson, Dr Sinha, all their amazing staff, and everyone in the health field that has helped me with my ITP in the last 9 years.  Also a huge shoutout to my parents for being there for me 110% and always pulling strings and doing everything you can to support me in every single way.  You guys are all amazing and I honestly could not have gotten to this point in my life without you.  It's truly incredible how supportive the people in my life are and how crucial that has been to my recovery.  I can't fight my ITP battle alone.

Thank you, from the bottom of my heart!

Although my journey is not over, and maybe never will be, there is still more to my story.  This reaction was me hitting rock bottom.

I can only go up from here.

Your fragile friend, Tianna

Take the Risk

Fast forward to February of my grade eleven high school year.

June of Grade 11

Everyone's biggest worry was if they were going to have a valentine for the upcoming Valentine's Day.  The second semester was in full swing.  I was so focused on my classes that I almost didn't notice the speckles beginning to accumulate on my lower legs and ankles.



Here's the drill:

"Mom! I have speckles!"
"Let me check you over"
"Ugh fine"
*out comes the flashlight*

We concluded that these symptoms fit the "as needed" criteria for bloodwork, as stated on my standing lab requisition that I'm sure most 16-year-olds don't carry with them wherever they go...


We were right.  I was low.

Platelets - LL - 10

By this time, I was getting used to how these types of situations played out:

Symptoms, bloodwork, results, hospital, IVIG, more bloodwork, go home, repeat.

We loaded up the van the next morning and went to Nipawin.  Because my counts were at 10, Dr Sinha wanted to know my count the next morning to see whether I was dropping lower or increasing. In pediatric ITP patients, treatment is administered when patient's platelets are less than 10 (10 000)... so when I was exactly at 10, it was touch and go.

The bloodwork in Nipawin proved that my platelets were heading in the wrong direction.

"Platelets, could you please make a U-turn and try to go in the right direction?" I thought

Platelets - LL - 8

Although I only dropped 2 platelets overnight, I was in the treatment range, therefore, we continued our trek to Saskatoon Royal University Hospital which was going to be my home for the upcoming days.

Jamie & I

My ITP symptoms are quite fluent.  Petechia, random bruising, fatigue... and hunger.  I get SO hungry.  As most people know, I can't usually eat a lot.  I can eat the typical lunch and supper (occasionally breakfast but I usually wake up at noon due to the fatigue anyways) and snacks throughout the day.  This day was no exception.

Breakfast - Tim Horton's pulled pork panini + fruit smoothie
Lunch - Tim Horton's grilled cheese panini + donut + frozen lemonade
Lunch #2 - Red Lobster... The Ultimate Feast + biscuits + caesar salad
Supper - Ribs + fries
Supper #2 - Hospital meal
Evening snack - Ice cream with Jamie

My parents couldn't believe how much I could eat.  Even after that, I wasn't completely full.  I just got cut off for some odd reason..  Anyways, my tummy was (almost) full and I was ready to battle my ITP.

Dad prefers MY hospital bed over the chairs..

This episode was quite uneventful.  Everything ran smoothly and my platelets were heading upwards.  Now this time I was slightly disappointed that my platelets decided to cooperate so quickly.  I could've used an extra day.. or two or three.. to stare at the very attractive male nurses and med students that were taking care of me.



At one point there were two very attractive guys in the room beside me.  Fortunately, they were standing on the other side of the window so we could see them clearly.  I was a little too far to the left to get a great view like my mom had in her chair.  When I turned to talk to her, I saw her lower her phone and snap a picture of them through the window.  I didn't even ask her to do it.  Proud daughter moment.

Anyways, my platelets were back to a safe zone and we were ready to go home.

***

Just when I get through one battle, I'm onto the next one.  Shortly after my platelets crashing, we got a call from a surgeon notifying us that I got a surgery date for my jaw.  I had an underbite as a kid which led me to braces at a young age.  Unfortunately, I wasn't done growing, therefore, the final result of my braces altered and shifted.  I was unhappy with my smile because some of my teeth were behind, and some were ahead.  They didn't line up properly.   We walked back to the orthodontist's office and decided to go with the other option this time: braces and jaw surgery.  To put this into perspective, I went to ortho for the first time on February 8th, 2007.

Jaw surgery - August 16th, 2016

Of course, my platelets had just fallen not too terribly long before and we had no idea what they were going to do.  They really do have a mind of their own.  We were worried about how they would hold up during this major surgery.  Platelets have a HUGE role in any surgery and anything that needs to recover.  If I go into a surgery with low platelets, my chances of bleeding are higher and my chances of clotting are lower.  Between my hematologist and surgeon, they created a game plan specifically for my case.  I was given tranexamic acid which is a pill that helps healing and prevents bloodloss.  Despite not being able to eat or drink anything past midnight, these pills were an exception.  I was to take them the night before, the day of, and three days after my surgery to minimize the chances of me bleeding excessively during surgery.  Due to me needing to take the pill for three days after, I couldn't have my jaw wired shut.  Instead of the wire, they elasticised my jaw.  This totally sounds like I had it easy because elastics are stretchy but there was no way my jaw could open any further than enough to swallow my pill.  Luckily, everything went as planned and there were no complications.  I did learn that if you leave an open bag of popcorn twists out overnight they will get stale, making them easy to flatten.  When they were as flat as they could go, I could slide them in through my elastics and let them melt on my tongue.  The texture did not apply to me because of the state I was in and I tell ya, having something that wasn't blended up was a magical experience.  Throughout my surgery and recovery, my platelets stayed reasonable and cooperative, thankfully.

 My 2016 year was quite hectic regarding my health but looking back, I consider myself lucky.  My jaw surgery was, and still is, one of the biggest, most life-changing events to ever happen to me.  There was so much that I didn't know going into it.

Would my platelets get me through?
Would I wake up?
Would I bleed to death?
Would I look ugly?
Would I regret changing how I look?
Would my recovery be okay?

SSLC billet group

I was scared shitless. But I didn't want anybody to know.  I texted "I love you" to all of my family and friends that weren't there with me before I went into surgery.  I really was unsure of what was going to happen to me after I walked through the doors to the OR but everything turned out okay.  It was a big step to adjust to what I now look like.  I spent a few months after my surgery looking like a Dr Seuss character called a "Who".  Certain muscles in my face were still healing, leaving me looking slightly odd.  My mom still told me that I looked cute.  

My ITP really does determine the path my life takes.  My platelets and I are an unpredictable team but we manage to make 'er through everything.

I think it's time to share a few more things I learned from this experience:

1. Jamie Kowalchuk is the best at bringing snacks
2. Hot med students are really the key to getting better
3. Don't look in a mirror the day after you have jaw surgery... 
4. If your dad says he invented a new kind of soup, it's likely the fish and rice that they had for supper blended up
5. Popcorn twists will become your favourite food if you can't eat anything else that is solid
6. It is possible to watch seven seasons of Greys Anatomy in two weeks
7. Don't even try to eat a Smokie at SSLC, your jaw is not healed enough.  Just pack protein drinks in your backpack for later
8. Get yourself a mom who takes pictures of hot guys for you and you're set for life
9. It is totally acceptable to eat 5 meals a day when you have low platelets
10. I am fragile, not sick.  This is when I started using that term to describe my ITP

Most importantly, I learned that it is okay to be scared.  In all fairness, like I said in my first blog post, I don't like change at all.  My jaw surgery was a permanent change that was literally changing the way I look forever.  It's safe to say that I took a huge step outside of my comfort zone and I'm so grateful that I did.  Don't be afraid to take risks.

Your fragile friend, Tianna

Setback

Life was good and everything seemed back to normal.

Summer of 2014 was finally here and we could only think of one, really great way to spend it: Carrot River Landing.

We packed the truck up and hauled the boat behind, making sure we didn't forget the tube, our water skis, or the fishing bait.  Phone chargers were left at home because when the Schmaltz family camps, we "rough it".

No power.  No cell service.  No running water.

Yes, we survived.  When we weren't on the lake or around the fire, we're playing endless rounds of UNO or Skipbo, outside with the volleyball, or challenging each other to a game of Checkers or Chinese Checkers.

Livin' my best life!

As long as it's not too windy outside, my family is on the lake, taking in all the water has to offer.  If it is too windy... steer clear of dad because everybody that knows him knows that he HATES the wind.  Fortunately, we were able to take the boat out onto the water.  After a few hours of fishing, I convinced my dad to let me go for a ski.

"Please dad, I'm tired of fishing, can I ski?" (I wasn't even fishing anyways...but eating chips was getting boring)

After cutting in and out of the wake a few times, my back was starting to feel stiff, but then it began to hurt, really bad, causing me to let go of the rope that connected me to the boat.  I sat in the water while my dad looped around to get me.  I convinced myself that I was good to go for another round...which was a bad idea but fun while it lasted.  After this, I was really sore and blamed my back pain on that.

I told myself over and over that I would just get better tomorrow.  But tomorrow became the next day which turned into the next month.  The pain continued to bother me.

My family went on a two week road trip to Nanaimo, British Columbia later that summer.

1981 kilometers = 22 hours

The trip was long but it felt like it took forever.  Our equinox's seats did not do magic on my mysterious back pain but seemed to do the exact opposite.  No matter what position I moved my body into, nothing eased the pain.

Laying across my sister in the back seat? No.
Sitting up like a normal human? Nope.
Slouching enough to put my feet up by dad's head? Distracting and painful.

I resorted to sitting on pillows which didn't really fix anything but felt better than anything I had previously tried.  Don't get me wrong, B.C. is absolutely beautiful and my back pain did not stop me from experiencing the unique wonders of this astonishing province.  I did not let anything hold me back from swimming in the ocean, picking peaches, feeding kangaroos, or climbing in waterfalls.  I ate way too much ice cream, peaches, and seafood, leaving me with my back pain AND a tummy ache!

School started back up early in September.  I was just beginning my grade ten school year, nervous and excited.  I joined the Senior Girls Volleyball team and began to practice with them the first week of school.

I had a love for sports and that numbed the back pain that I was experiencing.  I carried on and pushed through the pain which seemed to become more difficult to ignore each time I exerted myself.

"It's nothing," I thought, "I'm just sore from practice and it'll go away"

The second week of being on the team became the last week of my entire high school volleyball career.

Monday, September 8th, 2014
Everybody knows how dreadful Mondays are but I had no idea just how bad mine would be.

I woke up (after at least more than one wake up call) and got ready for school.  Because my dad coaches the football team and runs practices before school, Janay and I would either quad or drive 'Old Pam' on the trail across the field to my grandparents' house where the bus would come to pick us up.  After school, Janay had volleyball practice so I went on the bus to Grandma's house.  September is a busy month for my family because not only is there dance, football, and volleyball going on, hunting season was approaching.  I had strict orders to go back home after the bus dropped me off to practice target shooting with my compound bow.  Over the years, I have learned that my guide(s) can do just about everything... except make the kill shot so it was in my best interest to do my part and be prepared.

Once I got the target set up and verified the distance with the rangefinder, I was good to go.  My black and green release was snug on my right hand while my arrow was knocked into place.  My hair was pulled back and my shirt was tight to my arm.  I was set.  As soon as I pulled back, something went seriously wrong in my back.  It took everything out of me to fight the pain and follow through with the shot at the target.  I slowly walked to retrieve my arrow, hoping that my back pain would release but I had to stop and sit on the target.

My friend, Kristian, always used to tell me, "Tianna, I've never seen you cry!" If only he saw me at that moment.

I cried, releasing anger and pain with tears rolling down my cheeks.  I tried to continue with my target practice but this was a terrible lapse in my judgement.  The next shot confirmed that something was really, really wrong.

My back became steadily worse.  I went to the doctor and went for different types of testing.  It all showed that I had nothing wrong.  My back began to spasm uncontrollably.  At this point in my life, the only thing that helped the pain was a really strong muscle relaxant.

"Take 1 twice a day"

I took the first one of the day and 30 seconds later, I was sleeping... I woke up 18 hours later.  I decided that I couldn't take that pill twice a day or else I would be sleeping for the rest of my life.

I'm sure you're all wondering how this has anything to do with ITP and why I'm not just going to the chiropractor or taking Advil.  This is why...

"Go to the chiropractor," we were told by almost everyone who heard about what I was going through. People swear that they can fix everything almost instantly, which I don't doubt at all!  But imagine having approximately 15% of platelets that a "normal" person has.  Chiropractors aren't always gentle, or I guess I should say, as gentle as I NEED them to be.  If I were to go to a chiropractor with low counts, there is a high chance of me walking out with more damage (due to my ITP) than back pain relief.  So needless to say, chiropractors were not something we were prepared to risk in my particular situation at that time.

"Take some Advil!"
It knocks the pain right out after poppin' a couple 200mg pills.  I believe you.  But Advil and ibuprofen are medications that fall into the Anti-Inflammatory category.  They impair the action of the few platelets that I have.  Again, having low platelets, I need every platelet to be as sticky as possible.  Most of the painkillers that would really knock out my pain and reduce inflammation could take a toll on my platelets, causing more negative outcomes than positive.

Robax Heat Wrap

It wasn't easy getting pain relief.  I tried all sorts of remedies like ice, heat, back braces, Tylenol, stretches, and topical rubs.  I resorted to sleeping in a Zero Gravity lawnchair for quite awhile as it put more pressure on certain parts of my back, reducing the spasms.  I also went through a ton of Robax Heat Wraps.  In the end, I could only truly rely on those muscle relaxants for a bit of relief.  My mom decided that it would be best to divide the muscle relaxant tablets into many minuscule pieces because apparently, 18 hours of sleep is a little excessive and the teachers frown upon sleeping through class.

Lawnchair bed

I quit the volleyball team because being on the sidelines all the time became too difficult as I really wanted to play and it physically hurt my back to be sitting on the wooden bench.  I gave up dance because I was missing so much choreography that there was no way I would be able to catch up.  The rest of my school year was dedicated to finding answers about my back while hoping that my platelets were staying stable.

I started to go to physiotherapy to strengthen my back and work on exercises but the relief I would get from a session would last for a short time afterwards if I was lucky.  In the end, we decided that physio alone wasn't the answer.

At around Christmas time, I noticed that my left foot felt different.  It was heavy and not cooperating as well as I wanted it to.  The more I paid attention, I realized that it was numb... from my knee down.  I had no feeling which is why it was feeling like more of a weight than anything.  This scared the doctors, which scared me.  I was scheduled to have an MRI but that didn't pick up anything.

"Pinched nerve? Bulging disc? Tumour?"

I was scheduled to have an MRI and fortunately, it came back clean.  Over time, my leg regained feeling and worked properly again.  We went through the spinal pathway with Bourassa & Associates but remained without answers.  I was determined to play badminton, no matter what.  That determination led me to a sports therapist based out of Nipawin.  I hobbled into his office and the way he looked at me, I knew he was thinking, "this is bad".

Curt Cummings works magic.  I don't know what he did exactly, but he did something that fixed me.  I walked out of his office standing upright, without pain.  When I returned home, I took it upon myself to send snapchats to my friends of me, bending over backwards, in the mirror.  This might sound ridiculous but to put it into perspective, I hadn't been able to stand straight up in months.  I was hunched over since September... this was now April.  I couldn't even straighten my back, let alone bend it backwards.  This was a BIG deal.  Finally, I was getting some relief.

Although Curt fixed me, I still have chronic back pain.  There is absolutely no comparison to how painful it was back then, but some pain is always here.  I gave up all of my sports, except badminton.  But to play badminton, I still had to take part of a muscle relaxant (weaker strength) and Tylenol.  Additional to that, I had to rub Voltaren or A535 on my back throughout the day and wear IcyHot patches during games.  If I failed to do those things, I would pay for it.  I was never able to smash a birdie because my back restricted me from swinging properly.  My worst fear on the court was being flick served..which my opponents picked up on quickly.  Despite the pain and all that I put my partners through, we were successful.

Cameron and I played every season together from grade seven to grade eleven, medaling multiple times in NESSAC competitions.
Kyler and I played together in my very last season, making it to regionals.

Just like my ITP, I have not let my flawed back rule my life (for too long).  They are both a major part of my life and influence my decisions daily.  Both ITP and my chronic back pain restrict me from doing certain activities.  For example, I can't go sliding down Pasquia Park hill because my platelets are too low, my back isn't strong enough... and mom won't let me.

We never did find out exactly why my back flared up the way it did but we know that certain things influenced it:

• When I was a baby, I never crawled.  As a result, certain core muscles are undeveloped.
• I have mild scoliosis.  The muscles on the left side of my back pull and get strained more than on the right.
• When I fell in volleyball in grade eight, I jammed something in my hip that may have messed things up in my back
• ...and all the things that I'm sure didn't help (waterskiing, a 1981km roadie, and shooting my bow)

After this long write up, I'd like to share a few more things we learned:

1. Always listen to your body, even when it is inconvenient 
2. Just because something works for someone, doesn't mean it will work for everybody
3. SUV's are terrible for people with bad backs
4. My mom should stick to travel souvenirs like keychains and coffee mugs... not Monkey Trees (google it)
5. Being able to bend over backwards is a super big deal 
6. The second biggest part of a backpack is always "Tianna's Personal Pharmacy"
7. I am truly the most annoying person to travel with

Two steps forward, one step back.

Your fragile friend, Tianna