Fear

Hey everyone, it has been a hot minute.

***

In all honesty, I haven't really felt like writing an update because a lot has happened both medically and in life in general.

Long-story-short, I had an episode in Alberta where my platelets crashed. At this point IVIG and steroid treatment were out of the question as both are deemed ineffective for my ITP. Unfortunately, the out-of-province hematologist I was referred to did not seem to care about my health history. This lack of care and respect for a patient in critical care led me to leave against medical advice until I could get proper care for my disease. 

Fortunately, my platelets bounced back up on their own and have been relatively stable. 

However, if you know me or have been following along with my story, fall is a scary season for me. And no, not because it's Halloween. My platelets have a tendency to drop below safe levels putting me at an increased risk for a brain bleed. Just a reminder but when my platelets are less than 10, a sneeze or headache can result in death; hence, the name 'fragile friend'. 

Further, my other autoimmune disease, Neutrophilia, means that I don't have a strong immune system AT ALL. As mentioned in previous blogs, if I get a fever and do not get to the hospital in time for immediate treatment, I will die. It is time-critical.

How does COVID-19 impact me? Why do vaccinations matter to me?

Right now, I am scared that my platelets are going to drop as they routinely do this time of year. I am watching and praying that the big bruise on my leg doesn't result in a platelet crash. I am scared because if my platelets crash, I do not know my treatment options and a splenectomy might be my next bet. I am scared because either way, if I need treatment, there will not be a hospital bed for me. I am scared because I will have to stay home, hoping I don't sneeze or get a headache, hoping my anxiety stays low enough that I can function, hoping I have enough energy to get out of bed every day. I am scared of being so fragile that a hug could kill me. 

I am scared that my neutrophils might crash if I get any sort of illness. I am scared that if I get a fever, I will get to the hospital and they won't have room for me and I won't have a fighting chance. 

I am 21 years old and I am eligible for my third vaccine booster shot because of these disorders. 

Remember H1N1 back in 2009? I was too late for my vaccination. I caught it. I got deathly ill. It flipped my immune system into attacking itself and, we have significant reason to believe that it is the sole reason that I have ITP in the first place. So what would happen if I got a variant of COVID-19? What will my body do then? I might not end up in the ICU or super sick at the time, but I might have years and years of autoimmune disorders to come. 

I respect people having their own choice to what they inject in their body. I don't fully agree with how everything has been handled thus far in the pandemic. But, I do know that healthcare workers are working their asses off. And I also know that people like myself, are fearing their lives because of the lack of consideration from the general public. 

Maybe you don't know anyone that has had COVID-19 or a bad experience with it. Maybe you don't understand what over-capacity in the hospitals means or maybe you just don't care too much because it doesn't impact you directly. Right now, I am telling you that it impacts me and threatens my life. If you consider yourself a part of my life, I ask you to reflect on this and your actions. I plead for you to do the right thing in helping others have a fighting chance. I know that if my platelets crash while this pandemic is happening, I could die. 

Your scared, compromised, fragile-friend,

Tianna

Saving Grace

Hey everyone! It's definitely been a while...

Since February, my neutrophils have fluctuated minimally.

My family was able to enjoy their vacation to Hawaii and I was able to facetime them every day. It was tough not being there but I was glad that they could still enjoy the trip. I was torn between wanting to know every detail and not know anything at all.

Although I had to stay at home for most of the break, I was able to surprise my little cousin at her birthday party. This probably wasn't a good idea because children carry a lot of germs, the party was at a hotel swimming pool, and lots of my family was sick, but being the stubborn person I am, my mind was already made up.

At the end of the week, my family's travel plan got a bit messed up when Janay and dad missed their connecting flight and ended up stuck in Vancouver overnight... with the van keys. Mom and auntie made it back to Regina when they were supposed to but they had no way to drive home so I drove to the airport to pick them up. Mom and I finally arrived home around 11:00pm. Everything was supposed to be fine until it wasn't.

I got chilled. I was trembling and shaking. I decided to have a warm bath which didn't do anything except make my chills worse. I started to panic a little bit. Mom covered me up with some blankets in an attempt to get me warmed up but that is when the fever hit. I had been texted Dr. Pearson who had given me detailed instructions on what to do at each temperature rise of the thermometer. With a rising temperature, mom and I decided to pack our bags and go to the hospital.

Mom, being the speedy person she is, decided that she needed to have a shower and get ready before going to the hospital. I, on the other hand, was freaking out because "If I don't get to the hospital in time, I will die". Needless to say, there were some few things yelled back and forth.

When we got to the hospital, I was seen immediately. The protocol is to place an IV then take a bunch of samples of blood. Once the bloodwork comes back, they decide if they are going to give me antibiotics intravenously.

I had been sitting at 0.1-0.3 for the past week. I get blood work done, the results come back, I am at 0.7 which was a big enough jump for me to not need antibiotics. I was free to go home and sleep (at peace, finally).

***

As the days and weeks passed by without much change in my neutrophils, I decided that living under a rock is harming my mental health. I began to resume daily activities, with caution. I was told to avoid sick people, wear a mask (which I didn't), wash my hands, blah blah blah. I did my best and somehow didn't get sick.. for the first while. Then it seemed that I was getting sick with colds every other week. I was prescribed so many different types of antibiotics that all of the names are sounding too familiar, almost as if they are my daily meds.

***
March 18th, 2019. I received a text from Dr Pearson:

"As the low neutrophils are not spontaneously improving and as you are having recurrent infections, I think it's time to check your marrow. This will: a) ensure that it's healthy and b) help us develop a treatment plan to get them up"

I knew this was coming but I wasn't ready for it. I don't think I would have ever been ready for it. But I had to be because I was scheduled to go in three days later on March 21st to have the procedure done.

***

Mom, dad, and I drove into the city the day before to ensure that we were there on time and that I had a good night sleep. 

The next morning, I was instructed to take a Lorazepam and Advil as soon as I woke up. Then we headed to the hospital where I met Dr Pearson.

I have had a lot of needles in my life and I know that I have a high pain tolerance so I figured I would be fine to go in by myself. So I did. First came the freezing needle. Right into my SI joint area. Then came the tears. That needle felt like it was about 10 inches long, stabbing into me, sending pain all the way down my leg into my toes. I texted dad and told him to come in.

I thought to myself, "If I can't handle the freezing needle, how the hell am I going to handle the rest of the procedure?"

My parents came into the room and sat beside me. It felt like the 15-minute procedure was taking forever.

Mom and dad told me after that Dr. Pearson was struggling to get a piece of my bone because my bones were so strong (I guess drinking all that milk pays off). They told me that he had sweat dripping off his forehead because he was 'drilling' so hard. What was supposed to only take 15 minutes ended up taking closer to 45 minutes.

I remember telling Dr Pearson that the lorazepam wasn't working because I wasn't relaxed or falling asleep. He assured me that my adrenaline was too high and that I would get through it.

The rest is a blur. I am not sure if I have amnesia from the adrenaline of the procedure or what exactly happened to my memory. Apparently, we walked to Dr Pearson and Denise's office to give them gifts. We also apparently went out for pizza. When I got home, my friend Taryn came over to visit. I ha
ve no memory of any of this.

I vaguely remember waking up in the van and sitting up, realizing that the freezing had worn off. My memory is spotty for the next little while.

What I do know is that my pain was outrageous for several weeks. I couldn't even dress myself for the first little while. I was completely dependent on my family.

Finally, after a couple of weeks of waiting, my results came back. My bone marrow was healthy meaning that I did not have cancer.

My neutropenia was autoimmune.

***

The results of this procedure also showed that my thyroid levels were abnormal. I was diagnosed with Hypothyroidism and put on medications that I will be taking for the rest of my life. This diagnoses made sense and completely lined up with the way I had been feeling.

***

Since March/April, my health has remained quite stable. I go for bloodwork often to keep tabs on my levels and I am in constant communication with my hematologist and doctors. I am so beyond thankful to be in such good hands.

***

On another note, I have moved to Lethbridge to continue my post-secondary education. I accepted my offer at the end of January, just before my health crashed again. This time, I wasn't going to stay home - I was going to work through it, and if I'm being honest, it has not been easy.

I love Lethbridge - the atmosphere, the people, the location. It is beautiful here. We live in a wonderful place, close to the university and close to a park where we have been able to go for walks and play frisbee golf.

Moving 10 hours from home to a place I had never been before was tough. I had to say goodbye to my family, friends, and pets knowing that I wouldn't see them for a couple of months. My closest relatives are roughly four hours away.

In addition to moving here, I have decided to take a full course load (5 classes) which I haven't done since my first semester of university before my health failed me. The change of pace has been both refreshing and draining. I love school and learning but I need a break. Reading week cannot come soon enough.


I am struggling to cook, clean, keep up with homework and study while trying to find time for myself. There are only so many hours in a day to get everything done. My biggest struggle right now is trying to get enough sleep. I know that this sounds like a lazy millennial complaining but sleep is SO essential to my health. If I don't get enough sleep, everything starts to spiral downward. I have missed a few classes of university just to sleep in or to go home and nap. As hard as it is for me to do, I have to make sacrifices to stay above water - my health comes before my schooling.

Honestly, university is tough for me right now. From not being able to understand my professors to struggling with exams, I'm not passing with flying colours. I feel that the effort I am putting in isn't being reflected which is discouraging but I have to keep reminding myself that I can get through it.

"A pass is a pass"

***

Finally, Taffy.

About a week before I was leaving for university, I stopped at my grandma's house to
check on the newborn kittens. I noticed that one wasn't thriving but I had to go photograph a wedding so I texted mom to check in on it. Later that night, I was driving back home and I had a gut feeling that we should go check on the kittens one more time. So, at 10:00pm, I drove to grandma's house. In the shop, I could only find one kitten. In the distance, I heard a little noise. I climbed around to find a cold, lifeless little kitten laying all alone on the cement floor. I picked it up and it squirmed a little bit. It was alive.

I ran into the house with the kitten, not knowing what I had gotten myself into but refusing to give up. Grandma didn't think that she would make it but I said, "If she doesn't make it, at least I can say that I tried".

We warmed up a bean bag and laid her on it to try to get her warmed up. Once her temperature was back up, we gave her some kitten milk in an eyedropper.

Grandpa made an impromptu incubator for the kitten and I took her home.

I walked into my house with the kitten and announced to my parents:

"So... I did a thing"

Dad was clearly not impressed but mom, who rescued five kittens herself when she was younger, was eager to help. That night, mom and I took shifts with the unsettled kitten. I spent the next day googling how to take care of a newborn kitten and reaching out to support groups. I drove to the vet to pick up some supplies. We had been told by many different sources that the survival rate of kittens this young was really low. I didn't care. I was going to do everything I could.

We spend the next few days bottle feeding, stimulating her to go to to the washroom, bathing her, and warming her up. It was a full-time job.

 After the rough first night, I was anxious about how the rest of the nights would go. But, to our surprise, she decided to sleep right through all of the following nights.

I got attached really quickly to the little kitten that I named Taffy.

Our dilemma: Taffy needed to be bottle-fed for approximately 6 weeks, requiring around the clock care. I was moving to Lethbridge in a week and had signed a lease that stated that no pets were allowed.

I knew that we were going to have to give her up but the more time I spent with her, the harder it was. I decided to text our landlord about our situation. After a couple days of waiting for his response, he called me to let me know that he and his wife were okay with me bringing her to Lethbridge with me.

We knew that this was going to be a huge responsibility. We had to somehow manage school with mothering this kitten. Luckily, the way all of our schedules worked out, Taffy only had to be home alone in the morning for an hour or two. Because she would wake up at 7am every single morning, it gave us enough time in the morning to take care of her, get ready for school, and put Taffy back to sleep for her morning nap. Fortunately, she would sleep the entire time we were at school.

Taffy has grown like a weed. She is 8 weeks old and weighs about 2 lbs. She is strong and healthy. She loves to play and spend time with us. She is spoiled rotten and really bad (like any kitten). We love her so much.

Personally, animals have been amazing for my mental health. I have always wanted a pet that could be with me through these years of my life. I have put up many arguments to my family, trying to convince them that I should be able to get a pet. I feel as if the situation with Taffy was fate. I didn't decide one day that I was going to adopt a pet. She was put in my path, or maybe I was put in hers. Either way, we needed each other. If I hadn't been in the right place at the right time, she wouldn't be alive right now. She is truly my saving grace.

***

Things I have learned:

1. It is okay to not be okay
2. New adventures are wonderful for the soul
3. Somethings are just meant to be
4. Animals truly are the best thing for my mental health
5. Everything will turn out in the end
6. I am a damn good cook when I want to be but I hate cooking

Now... back to studying!

Your not-so-fragile friend,
Tianna

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