Thursday, 30 June 2016

PHighter Friday: Tina P.

during my stable years.
I met Joel in high school when I was 16 years old. We were young, selfish, foolish, na├»ve and completely unaware of what life had in store for us. I tell you this as he is an important piece of the puzzle that is my life. He is the most important piece. Back then, things were great! I was actively playing sports, attending school dances, was greatly involved in school committees, managed a part-time job and all while still living that crazy free-spirited teenager lifestyle. My only complaint health wise was that my left knee and surrounding area was always hurting. But, after a visit with a doctor it was confirmed that it was nothing more than a common sports injury called Patella Femoral Syndrome that would eventually go away. Or so we thought…

After high school, Joel and I left our hometown in Sudbury for the big bright lights of Toronto where we were to further our studies in College. As starving students, walking was our ultimate mode of transportation. But when my walk to school and back started to get more difficult, I started to question whether there was something wrong with me. Joel, however, thought that I might just be out of shape and suggested that I go for a jog with him. And so I tried, and failed royally. It was then that I knew I had to see a doctor. Shortly after, I was diagnosed with a mild case of asthma and was sent on my way with puffers and such to treat it. Me not being a doctor, did not think anything of it. Many weeks had gone by and I still had yet to see any improvement in my breathing, even while on medication. One hot summer day, I had what I thought was an asthma attack while working outside at work. I immediately rushed over to my bag where my Ventolin had been hiding and sucked in a few puffs. But it was not giving me the relief that this medicine was designed to do. In fact, it was making my breathing worse! It was then that I knew there had to be more to this. So I phoned up my family physician and explained how the medicine was not helping any of my symptoms and he suggested I stop taking them. Unfortunately, he never pursued or investigated any further. This seemed odd to me and was quite frustrating, but as a young adult still finding her way into the world, I didn’t want to question my physician. After all, he went to medical school, not me.

Not too long after being removed from the meds, I woke up one night with excruciating sharp pains in the chest which only got worse anytime I tried to lie down. At this point, Joel was getting very concerned and took me to emergency. After several tests were done, the doctors at the hospital discovered that I had what they called an over-inflated lung. Basically, my lungs were being aggravated by something, but they just could not tell what. And so they decided to refer me to a respirologist. 

I saw Dr. Born for the very first time in September of 2003, exactly one year after I started experiencing symptoms. He immediately sent me for a few tests including a heart echo, where they finally discovered that I had Pulmonary Hypertension. But Dr. Born was not convinced that this was my final diagnosis. He truly believed that my PH was secondary to something else, and did further investigations. His suspicions were leaning towards me possibly having a cancer called Mesothelioma or what most people know it as “the asbestos cancer." Now this truly did not make any sense to me as I had never in my life been exposed to asbestos, but weirder things have happened.

I was referred to Dr. Hutcheon, a surgeon who would perform a biopsy on me to either prove or disprove this theory. Dr. Hutcheon however, had some reservations about this possible diagnosis and wanted to explore a notion of his own. What if all this was due to blood clots in the lungs? So before putting me through an invasive surgery, he opted to look into his idea first by sending me for a chest CT scan with dye. Low and behold, he was right! The test showed multiple micro blood clots just chillaxing in my lungs having a merry old day. Thus, I got a final diagnosis of Chronic Thromboembolic Pulmonary Hypertension or CTEPH.

I was immediately sent to the Toronto General Hospital Thrombosis Unit, where they had already begun the steps necessary to start me on a much needed blood thinner treatment. But one mystery still remained…where were these clots coming from? Many tests and examinations following that proved to have no impact at all on unlocking this mystery. I had no family history of clotting, no weird abnormal gene in my blood and my recent activities showed it to be impossible for it to be a lifestyle thing. We were all clueless. Meanwhile, as the focus was primarily on the source of my blood clots, my PH was being completely put on the back burner and was not being treated. After hounding my doctors on that very fact, they finally referred me to a respirologist named Dr. Granton who they had mentioned to me was, and I quote “a doctor that had an interest in PH."

6 months post transplant:Went up and down 
what felt like a million stairs at this arena.
Did it without feeling short of breath at all
To be honest with you, before I met Dr. Granton, my knowledge on the severity of PH was pretty slim. I didn’t even know what PH was until I was diagnosed! It never occurred to me once that this was the very thing that would one day drive my life towards the path of a double-lung transplant. I mean truly everyone was so focused on the blood clots and their creator that I guess in some ways it told me that PH was nothing to be concerned about. Boy was that an understatement on my part!
In the midst of this mess, Joel and I decided to move back home to Sudbury to be closer to family. We were young, afraid and unsure of what to do next. 

The years following were a non-stop roller coaster ride of ups and downs. I had a wacky amount of tests done, saw more than my share of doctors and had way too many hospital stays. And still, no explanation was found on how I got those blood clots in the first place. Many different treatments were tried and played around with to treat both my CTEPH and my embolisms. Dr. Granton even tried his luck on giving me Viagra, but it actually unfortunately made me feel worse and so the medicine was stopped. Throughout those fun filled years, we also discovered yet another mystery; there were random holes slowly forming in my lungs and not one doctor had a clue what was causing it. After several tests were done, one open-lung biopsy, one needle biopsy and what felt like a million sputum samples, they discovered that it was a strange bug that was causing mayhem in my lungs and was the source of all these holes. It is called Mycobacterium Xenopi and it was making itself way too comfortable for my liking. Apparently lung tissue was its food of choice. A hard core antibiotic treatment was in order and it took a whole two years to finally kiss it goodbye! To this day, the doctors still have no idea where I picked up that sucker.

On top of all that, my knee problems had re-emerged with a killing and it was not letting up. In fact, the pain was starting to spread to my calf, my thigh and basically my entire left leg. This problem was supposed to dissipate in my twenties, but it was only getting more aggressive. This was seriously starting to concern me and so after a visit to my family physician, he decided to send me to physiotherapy in hopes that it would help. It was there that I learned that my knee pain/swelling was not acting at all like one affected by Patella Femoral Syndrome and that none of the physio therapist had ever seen the likes of it. Meaning, they had no idea what I had, but they were certain it was not Patella Femoral Syndrome. What was I supposed to do with this information?  

By November of 2006, Joel and I had had enough with our lives completely evolving around my
4 1/2 months Post-Transplant, bought this cup
specifically because of the saying. So appropriate.
health. We desperately needed a change and we wanted to finally start living! So we picked up our bags and made the grand move to Ottawa. Why Ottawa you ask? The better question is “Why not?”.
After finally getting settled in our new home, my thoughts started to drift towards what the physio therapists had said about my knee not being my original diagnosis and so I decided to finally get a second opinion from another orthopedic surgeon, Dr. Habib. Upon meeting me, he immediately decided to send me for the one test that I had yet to go for, an MRI of the legs. I was truly relying on this test to give us some kind of answers as I was frankly getting tired of my body producing so many unsolved mysteries. My body unfortunately did not want to wait the few weeks till my appointment as the pain was progressively getting worse and was actually starting to affect my ability to walk.

Joel acted out of concern once again, and took me to emergency. Over the years, I have dealt with many difficult situations involving doctors who are unaware on how to approach my rare diseases and this emergency visit was no different. After explaining to the doctors not only the pain I was feeling in my left leg, but my entire health situation, they unbeknownst to me, sent me for what is called a D-Dimer blood test. Without giving me any explanation at all, in a very panicked manner, they arranged for me to see the Ottawa Thrombosis Clinic the next day. In fact, they said if I didn’t go first thing in the morning, they would admit me to hospital. Like many, I am not a very big fan of the accommodations a hospital can offer and so I gave them my word and went on my merry way. The problem was that the much anticipated MRI was scheduled for that very morning! So I decided to go to the MRI first. Now this is probably not one of my proudest moments, but in all honesty I truly believed at the time that the ER doctors were overreacting slightly. I mean, it would not have been the first time and in my defense, they really didn’t explain to me why they needed me to go and what the test results showed. So going by that, I really felt that the MRI was more important. Of course when I didn’t show up at the thrombosis clinic first thing in the morning, they immediately called me to express how important it was that they see me. And so Joel and I made our way there.

Once we arrived, it was clear to me that the ER doctors failed to mention some important information to me as I was instantly lectured by both the admin staff and the doctor on how irresponsible it was to disobey the doctor’s orders. Apparently, my D-Dimer test results were astronomically high which indicated that I was perhaps clotting. And after a leg doppler was performed, it was indeed confirmed that I had a DVT in my left leg, which would absolutely explain the unbearable pain. But I was on a fairly high dose of blood thinners, so how was this possible? Well apparently that dose was just not high enough. From that moment on, Dr. Forgie became my regular hematologist and would for years to come be involved in my care. After a few adjustments to my meds, Joel and I were finally sent home.

In early February of 2007, not even a month after my first encounter with Dr. Forgie, I landed yet again in emergency with severe chest pains and a serious lack of oxygen.  After a chest CT with dye was done, the doctors were able to indisputably tell me that I had new blood clots to the lungs. So even with the new dose of blood thinners, I was still clotting. At this point, Dr. Forgie was extremely concerned and was determined to find the source of the clots as she felt it was the only way to solve this matter. By this time, the results to that very important MRI I had gone for was finally in and it just so happens that Dr. Forgie had access to it because it was done at the hospital. A lucky find indeed, as it showed that I had a very large Arterial Venous Malformation(AVM) in my entire left leg. What is this, you ask? It’s a knotted mess of extra veins and arteries all balled up together. It’s very rare and is mostly found in the brain, and so to find one in my entire left leg was definitely an interesting find. Apparently, I was born with this lovely thing and it has been shooting baby micro clots up to my lungs since birth. But as the clots were very tiny, it took a whole 19 years before my body seriously started reacting to it. The only true indication that I had, but would have never known was the pain I felt in my leg back in high school. Who would have thought?  So, an IVC filter was inserted to protect my lungs from any new clots and another adjustment was made to my blood thinners. 

The months following felt like a constant vicious battle of me vs. the blood clots. New clots were still forming and so my medicine required even more changes. My IVC filter had magically shifted which meant that it needed replacing and because of the extremely high dose of blood thinners I was on, bleeding was starting to become a serious problem. Life was definitely challenging us in ways we had not even imagined.

In the midst of all that drama, my PH care was transferred over to the clinic in Ottawa where I met Dr. Mielniczuk and Dr. Chandy  for the very first time. There, they decided to try treating my PH with Bosantan or Tracleer.  Unfortunately, after only being on this medicine for a few months the doctors decided to stop it as it was not producing the results we expected and was actually causing severe headaches. So once again, my PH was being untreated, but it was manageable.

From 2008 on, years would pass with my health being pretty stable. I did incredible things and am so grateful for those years! I worked a full time job, traveled to some amazing places, experienced exciting new things like skiing, and did my best to try everything and anything at least once. I enjoyed and cherished every waking moment with friends and family, and had quite a few good laughs as well as some meaningful conversations. I watched as my wacky childhood friends grew up, got married and became extraordinary mothers. My baby brother also made me an aunt of three and I am still very impatiently waiting for more nieces and nephews that I can spoil. But probably the most important celebration that occurred in those years would have to be when I finally got married to the man of my dreams, my high school sweetheart; Joel. We also bought our first home, which was oddly enough down the street from my brother. Life was good and we were so proud of ourselves for learning the tricks of living with CTEPH. In fact, we thought we were pros at it! We had it completely under control. But how can you possibly control something like that?

3 months Post-Transplant, Bought myself a fancy mask to help
with germ preventions. As my immune system is suppressed
now, this is an unfortunate reality of being post-transplant.
By the end of June of 2014, I was finally taking a well needed vacation from work. Joel and I had no special plans, but to relax and enjoy the beautiful June weather here in Ottawa. In essence, we were doing a stay-cation. It was something I was so looking forward to as the past few months had been extremely busy in both life and work, and I was getting tired. My breathing even seemed to be slightly affected, but I pond it off as me needing this wonderful time of doing absolutely nothing. Unfortunately, by the end of that week I didn’t feel any better. In fact, I felt way worse!  In the past, it had always been my clotting issues that had given me a run for my money and so I assumed that whatever was making me feel this terrible must have something to do with that. So I phoned up Dr. Forgie and was seen that day. As per usual, she sent me for a chest CT scan with dye to see if any new clots had emerged, however, the results showed something entirely different. My heart seemed larger and was showing signs of my PH having worsened.  My PH doc Dr. Chandy was immediately notified and an appointment to see him along with a few other tests were scheduled.  He also had mentioned starting me on this new drug that was specifically catered to CTEPH patients and was supposed to make me feel fantastic. It was called Adempas. Sadly, I never made it to those appointments as after another visit to the emergency department I was admitted to hospital. I spent several weeks in and out of hospital that summer. I was however still put on the Adempas treatment, but after a few months of it and the results not being as expected, Dr. Chandy decided it was time to look into other avenues.

So an appointment was scheduled to see Dr. Rubens so that I may be evaluated for the infamous Pulmonary Thromboendarterectomy (PTE) surgery, where they would remove those nasty clots permanently. I had been evaluated for this before but was told that my blood clots were too small and too far to reach and so I did not qualify. At this point, there was no harm in trying again, but regrettably the results were the same. This is finally where the subject of a double-lung transplant came into the picture. By this time I was 31 years old.

Being told that I needed a double-lung transplant in order to continue living was unlike anything I have ever experienced before. 

I felt helpless, scared and yet totally ready for a fight. After all, I had been fighting this battle for a very long time and I was not about to give up now. So in April of 2015, Joel and I picked up our bags once again and made the grand move back to where it all began, Toronto. Here, I would be put on the transplant list and would wait for that amazing life-saving gift. Why was the move necessary you ask? Well, there are only 6 hospitals in Canada that perform this miraculous surgery and Toronto General Hospital, being the closest one to me, requires all patients to live within a 2 hour proximity to them. Finally, after a few complications and bumps in the road, I was officially listed on June 22 2015.

Although I expected the wait to be long and agonizing, it surprisingly went by pretty fast. The hospital actually keeps you quite busy with appointments and physio that it truly helps fill up those days for you and keeps your mind at ease. After a few months of being listed, my health had deteriorated even further and I was admitted to hospital. At this point, the doctors decided that my heart was under way too much stress and needed a little help until a matching set of lungs came in for me. They decided to put me on ECMO, a device used to help deliver oxygen to the body. This would give my heart the much needed break it was longing for. Dr. Granton was back into the picture now and was the lucky one to shockingly tell us that the machine would be hooked up directly to my heart and not through the neck or groin as Joel and I had researched. This meant open heart surgery.  But at this point, what did I have to lose? So I put my big girl panties on and was rolled into to surgery. I was on this machine for 6 days, when the doctors came into my hospital room with best news in the world; they had finally found a set of lungs for me.

I am now 6 ½ months post-transplant and I feel amazing! Words cannot express enough how grateful I am to my donor and their family for this selfless gift they have given me. They have given me time to share more incredible adventures with my family and friends, especially my truly outstanding husband Joel. Remember when I told you that he was the most important piece of this puzzle? It’s because without him I would not have survived this so effortlessly. Without his words of encouragement, his love, patience and understanding, this journey would have been a lot more difficult. I say this because so many people focus on the patient; on their strength and their will and their ability to get through any difficult matter. Yet a lot of these people would not get through these ugly times without the love and support of another. I was lucky enough to have more than one person by my side, including my super amazing parents who sacrificed so much and went above and beyond just to be there for me. But as my husband, Joel was at the center of it all. He was there for me when I could not walk anymore and needed to be pushed in a wheelchair. He was there for me when bending down was virtually impossible without passing out and I needed someone to tie my shoes for me. And he was there for me when life took a sudden turn and we needed to put everything on pause and head to Toronto for transplant. And so this is my homage to all support people out there, THANK YOU FOR EVERYTHING YOU DO!

Joel and I are now back in Ottawa and I feel like I can achieve anything. I no longer fear stairs, or hills or parking lots or walking in general. I get excited over things like cleaning the house or being able to NOT park in handicap parking for once.  I can play with my nieces and nephews without running out of breath and I can sing and dance again!

4 months Post-Transplant,
Went to gala for organ donation awareness.
Danced the night away here!
If I could give anyone who is currently going through the transplant process right now any words of wisdom it would be this… I know it’s scary and you may feel at times like you can’t do it, but the truth is YOU CAN! Trust me when I say this, it is totally worth it! Just stay positive and remember what’s waiting for you on the other side, being able to breathe again, being able to live again! You are strong enough and you are worthy.

Although my journey may seem like a long list of unfortunate events I can honestly say that I am in a way grateful for them. I am proud of my story and how it has shaped me as a person. I would not be who I am today without it and am so happy with the “me” that I have become. Every scar on my body has a tale to tell and will forever be a reminder to me on how precious life really is, and how courageous and strong I can truly be even the worst of times.

*Editor's note: Did you know it only takes 2 minutes to register to become an organ donor in Ontario? Check your status or sign up here

Thursday, 23 June 2016

How My Diagnosis is Hurting Me

"What's wrong with me?"

This was a question I found myself asking only a couple of months before being diagnosed with Pulmonary Hypertension. Upon diagnosis an expiration date was stamped on my back like a carton of milk. I was officially diagnosed with Stage 3-4 'Idiopathic Pulmonary Arterial Hypertension.' The word idiopathic is a fancy word meaning that the doctors have no idea why I developed this disease. There was no rhyme or reason.

The word 'idiopathic' attached to my medical files has almost felt like a curse.

Upon diagnosis, blood work was drawn to see if the PH was caused by a secondary condition. But this only weeds out diseases that are detectable through routine blood work. Often times, PH is caused by a secondary disease. If the secondary disease is managed, it can potentially help stabilize the condition of the PH.

I have tried very hard for over two years now to seek the help of specialists outside of the PH scope. I have all these loose ends and puzzle pieces of different symptoms and clues. They all seem to overlap into a grey area, none of which really fit into the diagnosis of PH.

Unfortunately, as soon as another specialist reads the words 'idiopathic' and 'fatal' on my medical chart, the appointment ends. I saw an endocrinologist a few months after diagnosis. She told me that I had probably about 5 years to live, and that there was nothing she could do for me. That was the end of the appointment, without even asking about my symptoms or looking through my files. Since then I have had many failed attempts with other specialists, but I continue to keep trying to find answers.

All my medical files from the first year of my diagnosis start with the same line. "Serena refuses to take her one medication as she believes it makes her worse. Serena has improved since her last visit." I look back at the months leading up to diagnosis and I started taking a medication that can interfere with the autonomic/sympathetic nervous system- although this is extremely rare. (PH- by the way, is also extremely rare.) The autonomic nervous system controls certain functions such breathing and your heart rate.

I explained to every doctor that this medication made me ill. It would make me bedridden within a matter of days after taking it, even after I started making progress. Each doctor told me to continue taking it, but I could feel it killing me. I was prescribed nearly 12 different variations of this medication until I had enough.

I stopped taking it. I switched medical teams. My 6 minute test improved by 100 meters. (This typically only happens in PH 3 months after starting a new medication.) The last time I had started a new medication at this point was a well over a year ago.

There are handfuls of puzzle pieces to my diagnosis that don't add up.

The PH progressed at an alarming rate, which isn't impossible, but very unusual for PH. It takes about 2-3 years for most patients to receive a diagnosis of PH, which unfortunately, allows the disease progress to a later stage. (Sometimes the progression of the disease can be escalated by something like pregnancy.) For me, I developed symptoms in a matter of months after starting this medication and a plane ride. Specialists tried to convince me that I have had it for years, but before June of 2013 I was working at the busiest bakery in town lifting heavy boxes up a rather large stair case- something that would be very difficult for someone to do with PH. At one point in my life I was carrying drum kits and guitars, and loading them into a van. I worked out regularly with no symptoms up until October 2013.

A PH specialist that I was seeing said that I may have POTs because of a few symptoms I show. My regular bloods pressure is 80/50 which is abnormally low. (My blood pressure was this low before starting PH meds, which can lower your blood pressure.) My blood pressure also drops when I stand. My heart rate increases by over 30 beats, and my o2 levels drop. So many of my symptoms overlap with other invisible diseases, making them harder to diagnosis. POTs can also be caused by a nervous system dysfunction.

One of the main causes for PH is a congenital heart defect. Upon diagnosis I learned I had a valve open in the chamber of my heart, and that the hole was rather large. I've heard conflicting opinions over and over again about this hole. It has been so confusing to hear one specialist say I will die quicker without oxygen use, while another one said I am fine because of that hole. A cardiologist said that if I got the hole repaired there is a chance I could be in better shape. I was never given a cardiologist after my diagnosis despite the abnormalities that appeared in various tests. Despite the hole in my heart, I was still given the diagnosis of having an 'idiopathic' disease.

I also had a fistful of other unexplained symptoms that are typically tied to sympathetic nervous system. I remember laying in the hospital bed after my right heart cath telling the doctors that my feet and arms were tingling. They told me that it had nothing to do with PH and that it was fine.

I've had night sweats, muscle weakness, the inability to regulate my temperature, intolerance to the heat and cold, nerve pain in my thighs and head, along with having my blood pressure drop upon standing. My blood work has also came back irregular for  markers for various things, but again, the word 'idiopathic' stops any specialists from trying to put together these puzzle pieces. I sometimes feel like they see me like a lost cause.

In March of this year I finally saw an rheumatologist. She took a look at the blood work done from the very day I was hospitalized and diagnosed, nearly two and half years ago. She laughed a little and pointed something out to the student doctor. She then told me that I wasn't crazy, that something was definitely abnormal. I had a high amount of white blood cells. She told me that she had a gut feeling that I had Lupus, and I was immediately put on some heavy duty imunno-suppressants. I received a phone call three weeks later informing me that I didn't have Lupus, or any other rheumatoid diseases. I am still on the Lupus medication, just to see what happens.

I have come into my appointments with research papers, along with written timelines and events leading up to my diagnosis. I bring up my strange reaction to do different medications. They are a little bread crumbs leading me to somewhere. Unfortunately, my desire to be proactive in my treatment has not been with an open mind from the specialists I have seen. Several times I have heard "you have idiopathic PH, sweetheart" as if that is a concrete diagnosis.

The word idiopathic relates to any disease that arises spontaneously with an unknown cause. To have it treated as if it a concrete diagnosis that answers to all of my symptoms, and has been diagnosed through blood work, is beyond frustrating.

Thankfully, my family doctor is a wonderful and patient man. From the very start of my diagnosis he has said that he would do whatever he could to help me. I recently went to him with my concerns, and he is happily referring me to several different specialists. He even suggested that I research different specialists to see what one would have the most interest in my case. I have been referred to other specialists before, I think they feel scared to over step over any other specialist's work and diagnosis.

It is discouraging, but I will keep trying until...

Truthfully, a large part of me is frightened that my PH will not be managed in an optimum way if my other issues are not addressed. It is clear to me that they over lap, and it is terrifying to think I could get sicker because of this. I hate thinking that I might get sicker, or even worse, all because no one will listen to me. All because they see the word 'idiopathic.' That giant question mark has made it impossible to get a real second opinion, or another diagnosis from another specialist.

I have already had one specialist tell me that I am "not crazy." I try to stay hopeful that someday my puzzle pieces will make sense to a specialist, and that I can get better treatment to help me stay here and healthy for as long as possible.

Wednesday, 22 June 2016

Kawaii Box Review and Giveaway

My best friend Melissa got me a 3 month subscription to Kawaii Box back in February. It was such a great gift idea because I kept getting presents well after my birthday passed. (Who wouldn't love that?) As someone living with Pulmonary Hypertension some days, weeks and months are more challenging than others. Having a little present arrive at random has certainly helped brighten some of my more challenging days.

In an earlier post I wrote about how subscription boxes are a great gift for someone living with a chronic illness. It also makes a great gift to give yourself. Now you have the chance to get your very own Kawaii Box!

Kawaii Box was kind enough to send me their May 2016 box to review. Kawaii Box also wants to send one of their boxes to one my readers, so please be sure to check the bottom of the post for giveaway details!

What is Kawaii Box?

Kawaii Box is a monthly subscription box. Each box contains about 10-12 handpicked kawaii items from Japan and Korea. Kawaii Box often includes a mix of Japanese candy, accessories and stationary.

How Much Is Kawaii Box?
Kawaii Box is $19.80 USD a one month subscription. It also includes free shipping world wide!

Kawaii Box May 2016 Review

Above is a picture of the outside of the Kawaii Box. Even the shipping box is very 'kawaii' (a Japanese word for cute.)

Here is glimpse of what is inside the May 2016 Kawaii Box. Everything arrived in perfect condition, and each box comes with a 'thank you' card that describes each item in the box. Items are wrapped in tissue paper covered in hearts. The box also includes details about how you can take a picture of your box for the chance to win another Kawaii Box!

The May box included the following stationary items:
- Lucky Star Origami Papers: the back includes small pictures how to create star shaped origami with the papers.
- Puffy Dessert Stickers
- Hello Kitty Pencil Sharpener
- Animal Icon Stamp Set
- Pastel Bear Pen: after having received several Kawaii Boxes, I can attest to how much I love the pens they include in their boxes. They are perfect for writing letters and doodling. (The ink comes out very smooth!)

I have several pen pals and the stationary items in the Kawaii Box are always great for creating personalized letters and mail.

For snacks, the box included:
- Anapanman Corn Rings
- Kasaugai Chibi Vege Remune Candy
The above picture also includes heart shaped silicon bracelets that were also featured in the May box.

The fun accessories included in the Kawaii Box for May 2016 are:
- Cute Animal Socks
- Kawaii Girl Coin Purse
- Kitty Doughnut Squishy: My favorite item! It resembles Hello Kitty and is perfect to squish if you feeling nervous or anxious....or you can squish it just for fun too!

The last item included in the box is this Fluffy Pom Pom Key-chain. I tried to take a picture that would should off the shape and puffiness of the pom pom.

Kawaii Box has been one of my favorite subscription boxes. The stationary items are perfect for anyone who has pen pals, or likes enjoys being creative. The snacks are always very fun as well. Some of the previous Kawaii Boxes I received included interactive snacks that you make, which is really cool. It makes for a fun activity with a friend or by yourself.

As mentioned before, the Kawaii Box ships for free anywhere in the world which is a really good deal for a subscription box. It can take several weeks to receive an item because the box ships directly from Singapore. I have contacted their customer care about some of my boxes because some took longer than receive than others, and their staff are very helpful and friendly.

Kawaii Box Giveaway

There will be a Kawaii Box give away on my Facebook Page, but you may also enter here. To win a Kawaii Box of your own please enter the contest here: Kawaii Box Giveaway

Good luck!

Friday, 3 June 2016

Are We Missing the Point? How Gord Downie Helped Change the Way I Face My Illness

On May 24th Gord Downie and his doctor from Sunnybrook Hospital in Toronto confirmed that he was diagnosed with terminal brain cancer. Their report stated that Downie had been dealing with the very serious disease privately since December 2015. Later that week, the Tragically Hip, a band that Downie has been performing with for over 20 years, announced that they plan to have a tour this summer.

Long-time fans were obviously heart-broken to hear about Downie’s diagnosis, making purchasing tickets for their summer tour a more difficult endeavor. Presale tickets have sold out in less than two minutes. In fact, presale had sold so quickly that The Tragically Hip added four more tour dates to accommodate to the predicted madness that will happen as I write this article- the public sale of their tickets.

Fans are obviously upset over what has happened over the sale of The Tragically Hip’s 2016 summer tour. Other ticket outlets have been purchasing large quantities of the tickets available during the presale, only to resell the tickets at more than 5 times the cost of the original price of tickets. Ticket scalpers are obviously taking gross advance of a sensitive situation that should be treated with the utmost respect. To make matters worse, a portion of the original ticket sales is being donated to Sunnybrook Hospital. Who is profiting from the resell of tickets at nearly 5 times more their original value?

There have been on going news stories regarding the foul play made by the ticket scalpers. Fans have flooded social media to express their anger at ticket scalpers. Some have gone so far to make online petitions to protest the resale of tickets at such a high price. Tickets are going for over $8,000 USD- making purchasing a ticket from a scalper nearly impossible for the average Canadian. Scalpers are trying to profit off of someone’s illness, and are using bots to take away tickets from the average hard working fan. It is wrong- so outrageously wrong.

But are we missing the point? 

Reports on the resell of tickets by scalpers flooded social media and news outlets almost immediately after Downie shared his diagnosis. While it is iniquitous that ticket scalpers are profiting more than the band, and the hospital they were donating money to, this fiasco has overshadowed everything else.

For anyone who is familiar with my blog, I was given about 5 to 10 years to live about two and half years ago, after being diagnosed with Pulmonary Hypertension. I think that Downie’s diagnosis might have struck a different chord with me, and perhaps other people in my situation.

Two years ago I was given a life expectancy, and was severely disabled requiring supplementary oxygen 24 hours a day at the age of 25. Although I am still living with a very serious life-threatening illness, I am doing better than I was two years ago. However, I found that I became afraid of living for fear of making my condition worse. Going to concerts and shows was one of my most cherished past times in life, but I stopped going to them after my diagnosis out of fear.

I worry how the bass will affect my heart (something I have always had an issue with.)
I worry that I will need to wear my oxygen as the night goes on and I get tired.
I worry that I might have to wear a medical mask to protect me from germs.
I worry that people will stare at me because of my medical equipment.
I worry that strangers will ask, “what is wrong with me?” Which is always funny to answer, because I don’t feel like anything is “wrong” with me. I just happen to be sick.

Living with a terminal or life-threatening illness has sometimes made me feel like I am staring down a barrel of a gun. When I heard about Downie’s diagnosis, and how he planned to go on one of his best tours yet, it really encouraged me. Hearing the way he faced his diagnosis made me want to change the way I was facing mine. This man was also staring down a barrel of a "diagnosis gun" and he’s going to do what he loves to do anyways. Why wasn’t I doing the same? I realized I couldn’t keep letting life pass me by out of fear. Maybe it is time to test the waters a bit. Maybe I cant’t know what I can or can’t do without trying. I was lucky enough to score presale Hip tickets (please don’t hate me!) I also plan to go to a smaller local show next week just to test out the waters. The idea of going to a venue that houses nearly 20,000 with lots of stairs really freaks the heck of me, but I am hoping I will have a great time with no ill consequences to my health.

If only for a moment, can we shift our focus from how what the ticket scalpers are doing should be illegal, to how great The Tragically Hip and Gord Downie are?

Jack Chamber’s painting 401 Towards London No. 1
The Hip to me, are classic Canadiana, comparable to Jack Chamber’s painting 401 Towards London No. 1. When I listen to their music I can picture the Canadian landscape that surrounds me. This is mostly because of their phenomenal story telling. Some of The Hips most loved songs tell the stories of news events that took place in Canadian towns. Fifty Mission Cap tributes former Toronto Maple Leafs player Bill Barilko, and his mysterious disappearance due to a plane crash, and the eeriness surrounding the retrieval of his crashed plane. 38 Years Old recounts the fictional account of some 14 inmates that escaped from a prison in The Hip’s hometown of Kingston. Their lyrics and songs remain a vivid backdrop for Canada and its stories, both big and small. Real and fictional.

I want to thank The Tragically Hip and Gord Downie for lending their music to become apart of the soundtrack to so many people’s lives. I remember how excited a bar full of college students got when someone sang New Orleans Is Sinking at a Karaoke bar, in Waterloo, Ontario, just a few years before my diagnosis. I remember watching the music videos for Bobcaygeon and Ahead by a Century back when Much Music still played music videos, on early Saturday mornings before my parents were awake. Whenever Fireworks comes on the car radio my boyfriend, Spencer, sings along and squeezes my leg extra hard at “you said you didn’t give a fuck about hockey…” This will always be one of my favorite memories.

While I think that we can all agree that what has happened with the ticket scalpers in this situation is very disappointing and in bad taste, please don’t let it outshine what is really important. Gord Downie shared a very personal diagnosis with the public, something that I know is very difficult to do. I am sure that he and his family are facing something that is very hard to imagine unless you have experienced it. By letting the ticket scalpers cause so much anger, we are letting them place value on the wrong things. There is so much media attention surrounding this. Wouldn’t it be more beneficial to raise funds and awareness for brain tumors? Or discuss about the accessibility of drugs and treatment of diseases in Canada?

The way Gord Downie is facing his diagnosis has shown me how I want to face mine. It is also a good reminder for what is truly important in life, because I know that sometimes we all forget. Instead of focusing all of our attention on the negative, lets celebrate what was, what is and what will be.

Thank you so much, and I look forward to seeing you in August.