Devastation

Imagine being told that you can't go on your last family vacation right before you were about to leave.

This is how my weekend started out.

In July, my sister and I found out about our upcoming family trip to Maui, Hawaii in February 2019.  I knew that the trip was booked into the end of the midterm week but I remained hopeful, thinking that there's no way my midterms will be on the last two or three days of the week.  With that sliver of hope, I knew that there was also a great possibility that I could have midterms and that if I do, I might not be able to go on my trip.  I tried to remain optimistic but I didn't allow myself to get excited.

I was driving somewhere with my boyfriend and his family when my class information came out.  With that, I knew that my exam schedule was somewhere hidden within the multiple pages of information about the course.

English - February 15th
Psychology - February 15th

I hadn't found out my other two at that point but I was in a panic.  We were to fly out on February 13th.  My nightmare came true.  I was at a loss of what to do because as most of you know, university professors are not very understanding, especially of vacations.  Most times, it is stated in the syllabus that a trip is not a valid reason to miss exams.  I had to think fast, weighing my options.

Should I email my professors now that I know? Will they be more understanding because I found out this early on?  Will they tell me to suck it up?  Will they let me write a supplemental exam at an alternative date?

My mom happens to be close friends with one of the college professors that taught a different class.  I figured that she would be a good resource to give us some direction about this tricky situation.  Basically, she told us that considering it's the midterm week and not finals, they would be more understanding.  She also added that I should explain that this trip has been planned far in advance and that I am genuinely worried about my outcome and explain that I want to achieve in my classes.  I wrote up my emails and fortunately, both of my profs were understanding and told me that I could write a supplementary exam before I left on my trip.

Once I got back to school, I realized that I had more online options for classes as my options were limited at the college.  I decided to drop English and enrol in Geology.  At this point, I was in two classes that I had to attend and two online classes.  I didn't realize how much reading I was in for but I was up for the challenge.  On the bright side, neither of my online classes have midterms.  In the end, my psychology midterm got moved to March meaning that my classes were no longer a barrier.

The days felt like they were drawn out and slow moving.  Our trip felt like it was forever away.  I finally started to get excited last week when I attended my last Sociology class before I was to fly out.  I had arranged for notes to be taken and I had already finished all of my quizlets for each of my classes.  I finished packing my suitcase for the trip and packed another suitcase for my trip to my boyfriend's house on the weekend.  I remember being panicked because I didn't have enough clothes. I texted Carson asking if I could wash some clothes at his house so I could throw them in my other suitcase as soon as we got home and of course, he agreed with no hesitation.  I had lists left, right, and centre about what needed to be done and packed.  I was ready.

Friday morning I attended my last class.  My biggest worry at the time was convincing my dad to let me stay with my boyfriend until Monday morning instead of Sunday night.  I was upset because I hadn't seen Carson in over a month and he was busy with his last weekend of choir.  I had planned to drive out Friday after my class, spend the night at his house, and go into the city with his parents to watch the final performance.  Little did I know, my life was going to spin out of control.

I had been monitoring my platelets quite closely for the last year.  As a routine check, I went to get my counts after the Christmas break.  I got a call from my doctor saying that I am at a critically low level of neutrophils.  The normal range is 1.5-8.0.  I was at 0.7.  I was basically told to not get sick and to go for bloodwork the next week.  I was still at 0.7.  During this time, I had been in a text conversation with Dr. Pearson who didn't seem too concerned, even if I dropped lower.  He told me that he was headed to Hawaii on Friday before we left.  I knew he was a good doctor, but who flies to the same country as their patient when she's in a crisis? I'm just kidding.  He was going there anyway but it was kind of ironic and weirdly enough, it provided me with a sense of relief.

Friday rolled around, I went to class, went to the hospital to have lunch with mom and her nursing student, Mallory.  I was grouchy because dad and I were fighting about when I needed to be home.  After eating and ranting to mom, I headed down to the lab and got my bloodwork done.  I asked if they could tell me my neutrophil counts but they responded with, "sorry, we don't give out results".  This took me by surprise because I had been there for the past two weeks and received my results no problem.  They sent me to the front to sign a paper and pay a fee to find out my results.  I figured that I didn't have much of a choice because Dr. Pearson was out of the country and wasn't able to let me know.

A lady came out with forms for me to sign but proceeded to tell me that if my doctor adds anything to my lab requisition I won't be able to get the results.  She was strongly discouraging me and I was trying to explain that I've been dealing with ITP for quite a few years with no change in my lab req but she was persistent.  I figured that she thought that I was just a young person that didn't know what I was getting myself into.

I thought to myself, "Don't you think that if a young person knows what a damn neutrophil and platelet are she should be able to sign a consent form to get her results?"

I ended up just giving up on that conversation and my mom assured me that she would call the clinic and find out my results.  I didn't need to wait for that conversation to happen.

I was on the road when my phone rang over the Bluetooth in my vehicle.  It was my doctor.  He told me that my platelets were at 152 and that my neutrophils are at 0.2.  He was very concerned and said that he would be in contact with my hematologist.  I told him that Dr. Pearson was out of the country so he would have to get ahold of a different person, which he did.  I had also told him about our upcoming trip, hoping that these counts would not affect our plans.  He said he was going to call me back as soon as he knew anything.

I had a bit of a meltdown and a moment of self-pity.

"Why me?"
"Why can't everything just be normal for once?"
"Why are my platelets good and now something else is crashing?"

I pulled myself together when he called me back saying that he has good and bad news.  The conversation was a blur.  The words I remember were,

"Dr. Brose and I both agree that you are not stable enough to go on your family vacation."  

If I caught anything before I went, during my travels, or while I was in Hawaii, I would need to seek immediate medical care which could amount to hundreds of thousands of dollars in a minimal amount of time.  It was not worth the risk.

He proceeded to tell me that I needed to avoid all contact with anything that could get me sick and that if I got a fever, I needed to get to the emergency room immediately.  Of course, knowing that information I took it seriously but I ask a lot of questions to gather information from every angle I can think of so I asked him what would happen if I didn't go to the hospital.  He hummed and hawed a little bit and he said,

"You could die."

I remained calm over the phone and really appreciated the kind compliment he gave me about my blog.  As soon as I got off the phone I had another meltdown.. this time it was not as 'mini'.  The tears poured down my face as my hopes of Hawaii were crushed.  I silently scolded myself for letting myself get so excited about the trip.  I was also told how serious this was and how my life was on the line.

I was told that I was to get bloodwork done on Monday and Thursday.  If my counts did not go up, a bone marrow biopsy was going to come into sight.  This in itself scared me.  Every aspect of it.  The procedure.  The results.  The aftermath.

My parents spent the weekend going through every single alternative there was for the trip.  At this point, their decisions were completely dependent on my Monday counts.

No pressure Tianna, but if your counts aren't up one of us won't go to Hawaii either

I was an emotional mess. My anxiety was through the roof.  I couldn't calm down.  I was crying on and off, uncontrollably.  Once I finally felt like I got my crying under control, I would think of something else or talk to one of my family members and something else would trigger the tears.  My stomach wrapped into a tight knot.  Jeff made some potato soup (that was delicious) but I couldn't put anything into my stomach, I felt more nauseous with each bite, knowing fully that it was my elevated anxiety levels.

I went downstairs to go to the washroom, hoping to relieve some of my nausea and I ended up vomiting all of my food up.  It immediately calmed my stomach enough that I could go upstairs and watch some tv and try to enjoy what was left of the evening.  I asked for a pail just to have beside me and I laid on the couch with my heated blanket, still feeling nauseous and chilled.  During this time, everything was fresh and I was receiving multiple messages from friends and family members.  The support was overwhelming and I really needed to hear what you guys had to say.  I don't like to admit when I'm not okay, but I knew that I wasn't okay.  I also am not one to post a sap story to get attention,  I post my story to cope and to keep people informed but when I posted on my social media platforms, I needed support and I got support so thank you.

***

Throughout the weekend I was on the phone with my mom and then my sister and then my dad and then my grandparents non-stop.  I didn't know what was going on.  I felt helpless.  It was a lot to take in.

Laurie and Jeff were there to comfort me and they told me that they were trying to remain calm for me but they were pretty rattled too because of the state I was in and the uncertainty of my future.  Of course, when bone marrow testing comes into the conversation, you know that they are talking about cancer. Nobody mentioned that chilling word but we were all thinking it.

***

Throughout all of this, I felt uneasy because I wasn't working with who normally gets me through crises.  As much as I trust doctors, I value Dr. Pearson's opinion in situations more than anyone.  Finally, on Sunday afternoon, he sent me a text:

He was hopeful that this was an autoimmune malfunction and that bone marrow was not an option right now.  We had a very insightful conversation that lifted the biggest weight off my chest.  He even mentioned the possibility of me going on my trip.

After a bit of thought, I decided that I shouldn't go.  This was a pretty big decision for me but I really had to make sure my priorities were in line.  As much as I would love to travel to Hawaii and experience it with my family, it is not worth the risk of me getting sick and potentially putting my parents in debt.  I decided that if there wasn't going to be a bone marrow biopsy in the near future and that if I am able to go on with my daily life but just to be careful, my family should go and enjoy the trip.  Fortunately, my auntie is going to take my place and hopefully have an awesome time as well.

***

I was to complete bloodwork Monday morning.  I went to the lab that I had frequently visited last year while I was working through my studies.  It was nostalgic.  For a moment I almost didn't know if the lab was on the left or right of the hallway but it came back to me in a split second.

I handed my lab req to the secretary and wrote down an additional doctor that I would like my lab results to be forwarded to.  After what seemed like one of the shortest waits, I went in to get my bloodwork done.  The typical 5-minute process goes like this:

Lab Tech: Hello, how old are you?
Me: 19
Lab Tech: *looks at my lab req* "can you spell your last name for me?"
Me: S-C-H-M-A-L-T-Z
Lab Tech: "When's your birthday?"
Me "November 2nd '99"
Lab Tech: "Okay I think we're good to go"
Me: "I take the butterfly needle and I have really tiny veins.  They usually go out of this one on my left arm"

As soon as I sit down, I roll my left sleeve up and make a fist.  This helps my veins to pop out a little more than they already are, but still usually not enough to make the bloodwork an easy process.  Only very seldom do I let lab tech's draw blood out of my right arm.  I either have to really trust them and their skills, or my left arm is really beat up and needs a break.  Both options are risky because my right arm has a low success rate in this area.

Anyways, today (Monday), I had a student.  They always ask my permission and I always tell them that they can give it a shot but that I'm usually not anybody's favourite because my veins are so tricky.  Of course, I get a little flood of anxiety and break a sweat because I know all too well how it feels when they miss the vein and poke the needle around at different angles in my arm and/or have to retry.  The lab tech today put the needle in, and it looked as if the blood was ready to go.

"Right on," I thought, "he's got it."

I undid my fist which normally allows the blood to run into the test tube but my blood slowly trickled a little way and then it stopped.  He then started to wiggle the needle around, hoping to get the blood moving again but didn't have luck.  I was hoping that he was going to decide to just retry but he decided to keep jabbing the needle around.  There was a point where the needle, originally pointing upwards towards my shoulder was pointing sideways to my other arm.  This hurt.  I often bite my lip and jab my fingernail into another finger to cut the pain but that only goes so far.  Finally, he got it and the tube filled up really quick.  He got the bandaid on and told me to apply pressure, which is also part of the routine while the lab techs put the labels on the test tubes and dispose of their supplies used.  Towards the end, I explained how I deal with ITP and that surprisingly, my neutrophils are in a crisis and not my platelets.  I told him that I need to know my test results ASAP as my parents were still making some finalizing decisions on the vacation and because my doctors needed to know what to do with me.  He went to the back and talked to somebody and came back to tell me that it isn't possible to find out my results right away but I will get them later in the day or tomorrow.

(L-R: Sheena, Me, Tiffany)

Earlier in the day, I had texted both my cousin, Tiffany and a really good family friend, Jamie who both work in different departments of RUH.  Jamie was working in a different hospital but Tiffany's schedule aligned perfectly with ours.  About 20 minutes after my blood was taken, Tiffany gave me directions to get to her ward.  We had a really good visit for about half an hour.  It was really nice to talk to someone face-to-face that understands both the medical and emotional side.  Tiffany, like many other people in my life, has always been just a call or text away, no matter the distance.  She's always been there to vent to and she's like the older sister I never had but always wanted.  This visit truly made my day and lifted my spirits after a couple of really terrible, emotional days.  As soon as Tiffany's break was over, Jeff was back ready to pick me up.  Perfect timing.


My doctor phoned me with my results because again, they were critically low but this now wasn't a surprise.  My neutrophils jumped to 0.35, still alarmingly low.  My leukocytes were a little bit lower but higher than previously.  My platelets, for the first time in 10 years, did not show up with an "L" or "LL".  Finally.  They are at 162.  I've been staring at the beautiful, climbing line on my platelet tracker with a glimpse of hope.  Maybe remission is on its way for ITP.. maybe.



After a very thorough conversation with my doctor, I was reassured once again.  We were going to monitor and go day-by-day.  I am scheduled to get bloodwork done again on Thursday.  A bone marrow biopsy right now is not in the near future because we want to get a trend before we do more testing.

Basically, from what all of my medical team has explained to me, the best way I can explain what is going on in the simplest of terms is that my body is doing one of two things:

1. Autoimmune Disorder: My immune system is attacking my neutrophils faster than my body is making them
2. Other: For some reason, my body is not making enough neutrophils meaning that there is an underlying cause that we need to get to the bottom of

From the way Dr. Pearson put it, he is more convinced that this is an autoimmune disease, meaning that although I am at high risk, I would be at a higher risk if this wasn't an autoimmune disease.

At this point, we are hoping and praying that it is autoimmune and not something else but we don't know for sure.  Only time will tell.

***

On top of this chaotic weekend, in the middle of the day on Saturday, we received the news that my great grandma Marie passed away.  She was on a downhill spiral for approximately the past 6 months so this news was something that we knew was coming any day, but that being said, you're never really prepared to hear that a loved one has passed.  Grandma Marie was a wonderful lady who had a bold personality.  Her fashion sense was second to none.  For as long as I can remember, she always rocked her leopard print clothing and I always think of her when I see anything with that pattern.  She always spoke her mind, no matter what the context.  Grandma celebrated her 97th birthday a couple weeks prior to her passing.  

Additionally, when we first heard that she had gone to the nursing home and wasn't doing well, I drove to Leader to visit her.  We had a really good visit for about 45 minutes before I decided that grandma could probably use some rest.  My auntie Delsa, who took care of grandma, was due to be visiting grandma in the home.  Of course, if you know my grandma, she is very anxious and sometimes impatient.  She kept asking when Delsa would be there and I kept assuring her that she would be there soon.  I was planning on staying until Delsa got there but decided it was best to go.  When Delsa arrived, grandma told her that I was there.  Delsa, who knows that grandma gets quite mixed up easily, questioned her.

"Tianna? Cory's girl? The one that lives way up north in Carrot River?"

Grandma assured her that it was me and Delsa just figured that she had a mix-up.  Little did she know I was actually there.  We had a pretty good laugh about this and it's one of my favourite memories.  

My grandma had a life well lived and it was her time to go.  I am thankful for all of the memories of her and I will miss her deeply.

***

At this point, things were not playing out in my favour.  This trip was not meant to be for me.  Additionally, as if I needed a final sign, a snowstorm hit Maui.  I had already made up my mind before hearing about this but I am confident that I will be able to go on a hot vacation another time that there is no snow on the ground there while I'm trying to escape the snow here.  

As of right now, I don't know what the near or far future holds for me.  We're opening another mystery door and we're going to get to the bottom of this.  I am in good hands and I am hopeful.  I am not emotionally stable as it has been a rough week.  I might not be emotionally stable for a while, only time will tell.  This is my update as of right now.  It is as much as I know and this blog is not as humorous as I have tried to make my other ones but right now, this particular blog post is a coping post.  I need to get my thoughts out and I need to share what is going on.  

Thank you from the bottom of my heart for all of your support.  There are too many names to individually thank but each and every message brings a smile to my face, and tears to my eyes.  Thankfully, because of all of you, my tears are happy tears.  I am happy to have such an amazing support system.  I have said it before, and I am going to say it again: 

I would not be here without all of you and your unconditional support.  Thank you so so so much. 

***

I am not going to make a humorous list of what I have learned from this experience because I haven't gotten to the reflective point of this situation yet.  I want to add that I am NOT an expert in the neutropenia area or any other blood areas aside from platelets and ITP.  I'm convinced I could win an argument about ITP/platelets against almost anyone (aside from doctors and hematologists of course) because it is all I know.  My take on my situation is not a professional opinion or a resource to be used to anything because I am learning.  I am constantly digesting new information and not relying on a google search.

All that I know is that this situation has been shitty and one of the worst weekends of my entire life.  I know that I can't go on my trip and I know that I am unstable, in a lot of ways.  But I know that I will be okay.  I know that I can get through any test and that I can get through any news, good or bad.  This is another bump in the road and right now, it feels like an impossible mountain to climb.  I was hit blindsided by this but I will get through it.

Just a simple reminder: I am not sick or unwell.  I feel completely normal and as odd as it is, better than normal.  I'm simply trapped in a vicious cycle of autoimmunity.  Please don't tiptoe around me but considering my high risk of becoming ill, please do not be offended if I avoid contact with you or do not associate with you.  It is nothing personal and I am just protecting myself.  On another note, if you are sick, even have a trace of something, please do not plan to have any contact with me.  I feel terrible saying this as I know how common sicknesses are and I really hate living my life this way, but until we know what is going on, I need to take precautions.

Again, thank you for all of your support and kind words.  If you have any more questions or concerns, shoot me a message, even if you have never talked to me before.  I actually met one of my really close friends from doing a blog post around this time last year (another reason I'm thankful for having this blog).  Reach out if you want.

If you've made it this far, you're awesome.  Thank you.

Your not-so-fragile friend,

Tianna

Anxiously Awaiting

Hey everyone! It's been a while.

I have been busy busy busy.  I dove back into my studies in the fall.  I started out with only two classes so that I would get a taste of university again without letting my stress take over again.  Stress is, undeniably, one of the largest, most impactful factors that lead to autoimmune disease crisis.  Not saying that stress is the only thing that can cause a disaster, but it can definitely be the last push to get you over the edge.

You're gonna think, "what a nerd" when I say this but I actually missed school.  Don't get me wrong, I loved having a break and taking 6 months off of school was exactly what I needed to get back on my feet but it got BORING.  There are only so many movies and tv series on Netflix to keep me occupied  (I will post recommendations at the bottom). I was so excited to go back to school because it meant that I was getting better. I could finally see the light at the end of the tunnel.  I got back in my groove and it felt SO good.

My schedule was fantastic:

Tuesday - 7:00-9:50pm - Sociology 111
Friday - 9:00-11:50am - Psychology 120

I had a breathable amount of schoolwork.  This allowed me to set goals and work towards deadlines.  I found myself in my studies and I was reminded of why I loved learning.  Fortunately for me, my classes are Distance-Ed, meaning that I can live at home and go to school nearby.  This was the perfect alternative for me while I was (and still am) recovering.

Psychology 120 Potluck! (I am on the far left on the TV screen)

My platelets have remained stable.  October 27th was a big day for me.  I was almost in remission.  So close.  I hit my all-time record high of 148!  This was huge for me.  I had spent the last 9 fall seasons in crisis, getting bloodwork nearly every other day.  I was constantly texting my friend,

"Hey! Tell the teacher I'm gonna be a bit late, getting bloodwork"

ITP became so much of a chore at the end of every year and this year, I just felt relieved.  It felt like an absolute miracle.  I happened to be at the high school tutoring the afternoon that I got my results back and I remember coming into the library with tears in my eyes I was SO happy.  Then, of course, I sent out my count to my parents, grandparents, and then I made a facebook status, Instagram story, snapchat story, and probably posted it to every other social media platform I have access to.  I could not contain myself.  The positive comments and messages I received back were heartwarming and greatly contributed to the joy that I felt that day.

I was 2 platelets away from remission.  I thought for sure that I was done with all this ITP stuff but then I dropped to 128.  Don't get me wrong, that is a great number!  I was happy and still am, but a number above 150 would have been the absolute best news I could have ever received. Fingers crossed that it won't be long before my platelets decide to add a few more to the family!

Brooklyn & I

It scares me to even say this... but... (knock on wood)... my health has been fairly stable as a whole.  I haven't been sick in a long time.  I have had a few bumps in the roads but nothing as serious as what I was going through last year around this time.  I recently got treated for H. Pylori again.  My stomach was starting to bug me and considering that I didn't want a repeat of last Christmas, I went to the doctor and started the antibiotics early.  The treatment for H. Pylori is insane.  Basically, I was on 3 antibiotics and an acid reducer.  I was taking close to 14 pills per day for two weeks.  I am so sick of swallowing pills it's not even funny.  On the bright side, I ate as much as I could during this Chrismas holiday... and additionally, I probably ate as much as I would've last year too!  To say I overate is a bit of an understatement...

It was the night of the 26th and we were getting ready to head for home in the morning.  We were sitting on the couches visiting with our grandparents when I got really hungry.  So, I ate 4 Chrismas oranges.  Then I ate a couple handfuls of cotton candy.  Then a bowl of canned cherries.  Then canned peaches.  Then some chocolates.  Another orange.  Chips.  Popcorn.  And this was all AFTER we ate a big supper!  I really did have to make up for what I missed out on last year!

Christmas was great and the food, of course, was a huge highlight.

For the past couple of months, I have been battling with my ears.  I had a really bad outer ear infection in my left ear that lead me to the ER.  I thought that I ruptured or seriously damaged my eardrum because my hearing was not as sharp as it usually is and I was experiencing an extreme amount of pain.  The ER doctor prescribed me eardrops which helped for the most part.  I went to the doctor a couple of weeks ago because both of my ears were bugging me.  She looked in the right one and said, "yep. that one's bad" and then she looked in my left one and said, "oh my God. Eardrops won't even help at this point".  Fortunately, one of the antibiotics I was on for my stomach also worked for my ears and they are, for the most part, better.  My doctor originally said that she thinks I have chronically draining eardrums, meaning there could potentially be a hole.

I was referred to an ENT doctor and had my appointment last week.  I had been waiting on this appointment for a really long time (or what felt like it) and my ears had progressively gotten worse.  Mom and I drove to Nipawin on Friday morning for my 8:30am appointment (ughhhhh way too early).  We checked in and sat outside of the room where I was waiting to see my new ENT doctor.  I was still a little groggy and maybe half asleep when the door opens and my doctor walks out.  My jaw might have dropped to the floor and I may have whispered "oh my God" out loud.  He was so good looking I couldn't contain myself.  I'm talking young, 6 foot something, hot as hell.  So we get in and sit down and he asks me what I do and I literally can't talk.  I stuttered until I finally got out that "I'm a student".  I was hoping that mom would help out with the conversation because I was obviously distracted the entire time but she must've been distracted too.  Anyways, the appointment was all fine and dandy until he wanted to stick this long probe thing up my nose.  It basically went to the back of my head.  That thing was WAY in there.  But it was okay because I was too distracted to hardly notice.  This, we realized after, would've been the perfect time to take a photo to "look back on the procedure Tianna had gotten done" but really just look at the hot doctor.  Opportunity missed BUT I have his card and might just call him up if my ears get bad again... not that I'm wishing or anything...

In all seriousness, he said that my ears were pretty well healed and that was great news.  So as far as that goes, I'm in the clear.

My underlying medical issue for the past little while, on the other hand, has been a difficult one to manage...

Anxiety.

I am gaspy.  I get gaspy.  I gasp all the time.  Non stop.

I have no idea why.  It feels like I am not getting enough air.  I started on 15mg Mirtazapine in the summer and by the fall, I had upped my dosage to 30mg and I had a referral to a Psychiatrist.  This in itself was scary.  I'm not crazy so why should I be going to one of those doctors?  I had so many thoughts going through my head but I got there only to find out that there was nothing he could do and that I was on the right track.

He also asked me if I smoke marijuana... which has been the weirdest question I've been asked to this date... the answer is 'no' by the way.

My anxiety is different because I have the symptoms but I don't feel any different.  I don't feel stressed or anxious, I just suddenly cannot breathe properly.  My breathing gets worse in the evening and progressively gets worse as the night goes on.  My family doctor (NP) has been unsure of other medical alternatives for me because I do not have depression.  Most anxiety medications are also used as anti-depressants but considering that I only have anxiety and not depression, my options are limited.  To make things more complicated, there are lots of medications that can impact my platelets so I am always trying to avoid those alternatives as well.

At this point in my life, I am frustrated and at a loss for how to explain it and how to deal with it.  I hate going out in public when I gasp all the time.  I feel the need to try to fight my gaspyness or try to do it discretely but the more I want to hide it, the worse it gets.  I am trying to find a solution and recently, I have invested money in the Calm app.  The sleep stories have helped me relax and go to bed at night and now I am venturing into the meditations.  I have mixed emotions about meditations... I don't really believe in them... but at the same time, I don't have many other options.  I've been trying to do them before I go to bed and they have been working for the most part.  They make me feel relaxed but I wouldn't say that they stop my gasping for a long enough period of time.  I know that I am going to have to try to do them more throughout the day but I am struggling to manage my time and juggle all of my other things going on as it is.

Right now, I am in 4 classes.  My schedule is the exact same as last semester except I have two online classes.  Online classes require a ton of reading and work.  I have been working all day, every day to get caught up and stay ahead in my classes.  I hardly have time to take a break and grab a snack.  That being said, this is just the beginning and I am trying to get into a routine that will allow me to have a life that doesn't revolve around my computer.  I am just not there yet.  This courseload alone is double what I had done last semester and I am ready for it but I am wishing that I had a little more me time.

Basically, my breathing is caused by stress and causes stress.  It's a vicious cycle and I am trying so hard to figure out how to end it.  My breathing alone has caused me social anxiety.  I am always hoping that I blend in enough that nobody will notice my breathing but I am constantly aware that it is a part of me that I cannot hide.  It is something that I cannot consciously decide to quit doing.  It takes work, lots and lots of hard work and dedication to overcoming this mental health issue.  I am hoping that by explaining this, you will get a better understanding of me and what I am going through every day.  I am more than just the "gaspy girl".  I don't want to have to explain my story or feel the need to explain it everytime I am out with people but I also do want you to be able to ask me about it if you want to.  I'm an open book and this blog is almost like my diary.

My anxiety has honestly been one of the biggest things in my life that I have been dealing with.  It is an underlying issue in all of my other problems that come about.  I don't know why my anxiety started but I do think that my disastrous health episode last year caused me a lot of extra anxiety and has since become a trigger for it.  I get especially gaspy and short of breath when I am waiting for a doctors appointment or waiting for my bloodwork results.  It is unconscious but predictable.

To be completely honest, my anxiety has taken up what's left of my free time. I have been completely focused on my schoolwork as I am working for a high enough GPA to transfer to a different university but I am thankful that all my resources are so close to home.  This allows me to work on my health with great support while working towards an education.

Couple of things I've learned:

1. Always jump on a photo opportunity - especially when the doctor is a 10/10! C'mon Mom!
2. My gasping does not define me but it is a huge part of who I am
3. Meditation isn't all that bad...
4. It is incredible how much better I do in school when I don't feel like I'm next to my death bed; I was getting 50's last year, barely getting through my classes, and only thinking about sleep and now, I'm pulling off high 80's!
5. Damn it feels good to eat and not be sick all the time
6. It is quite possible to eat 2.5 gingerbread houses in the course of a week...
7. It is crazy how much can happen in a year

Netflix Recommendations - as promised:

• Switched at Birth
• The Fosters
• Greys Anatomy
• Life in Pieces
• Gossip Girl
• You
• Atypical
• Shameless

This past year has been a wild one.  Thank you all for sharing this journey with me!

I am hoping that this year brings answers and high numbers, happiness and good health!  Here's to 2019!

Your fragile friend,
Tianna

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