Friday, 30 December 2016

New Year, New Blog

I've decided to start a new website and blog. I felt like I needed a fresh start, and wanted a space that could be more personal for me. I still plan to write about my life. Living with pulmonary hypertension will still be a big theme for me, but I'd like to be able to write about whatever interests me as well.

If you're interested in following me in my next blogging journey, please update your book marks to: http://www.worship-and-tribute.com/blog

Friday, 16 September 2016

Give Canadian Pulmonary Hypertension Patients Access to Life-Prolonging Treatments

I started a petition about a week to help Canadian pulmonary hypertension patients gain access to more available treatment options.

Unfortunately, many Canadians with pulmonary hypertension are denied treatment options and access to newly FDA approved medications that are available in the US simply because of cost. With a disease as serious as pulmonary hypertension, patients cannot afford to wait for better treatment options to become available and accessible to everyone.

To learn more, and to sign petition, please click here.

Pulmonary Hypertension News also wrote about why Canadians have access to less treatment options, my petition, and a bit about me. That article can be found here.

Thank you for everyone who has taken the time to learn more about my petition, sign and share it.

Wednesday, 31 August 2016

"There Was Little Support For People With The Same Rare Disease So She Stepped Up"

A photo posted by serena (@worshipandtribute) on

"Life can change in an instant. One day you feel great, your health is good, you are on your way to living the life you've always dreamed of. The next, you start feeling less than great. And then even worse and eventually you're being told you're sick, more than just a pesky cold that won't go away. Suddenly you have to start incorporating regular doctor's visits and time for treatment into your schedule. This isn't what you were prepared for and you never got a warning this would happen to you. Life has taken a complete 180 without your consent."

I was recently featured on Diply! Please visit the source to read more about my efforts to raise awareness for pulmonary hypertension.
http://diply.com/different-solutions/article/woman-riases-pulmonary-hypertension-awareness-rare-disease

Tuesday, 30 August 2016

Subscription Box Review: calmbox Review

What is calmbox?

calmbox is a monthly subscription box including several different items to help promote mindfulness, unwinding and finding the calm within everyday life. Items range from music, tea, candles, natural products, motivational items and and inspiring books. The theme for August's calmbox is "calm summer evenings." A portion of proceeds from every box is donated to charity. This month a portion was donated to charity: water.

How Much Does it Cost?

calmbox costs $35 USD, plus free shipping for one month's subscription. However, first timers to calmbox can enter the code "CALM" during their checkout to receive $5 dollars off their first purchase.

calmbox August 2016 Review

The calmbox arrived quickly, and all items were received in perfect condition. The shipping box is quite lovely, and has lots of little details. The inside of the lip of the box says "breathe" with a heart, which I found very fitting for someone with pulmonary hypertension. The other outside edges of the box contain calmbox's social media platforms, along with a quote by Buddhist monk Thich Nhat Hanh about drinking tea in a mindful way. It was at this moment I knew that calmbox would be my favorite subscription box that I have reviewed.

I like that calmbox helps promote inner peacefulness, but is also conscious on a more global level. Knowing that part of their proceeds goes back to a charity is a really nice idea (its like two gifts in one!) Their boxes are also packed using eco-friendly materials.

The calmbox included an array of goodies to help one achieve calmness. It also came with a write up about each item, the charity that a portion of the proceeds were sent to, and the months theme.

One of the first items I noticed was "Everyday Positive Thinking" by Louise Hay and friends. I actually purchased this little book a couple of months and read a motivational quote each morning to try and start my day on a positive note! This book is definitely a good choice for the calmbox. I think reading a quote while enjoying a some of the Sweet Tangerine Positive Energy tea by Yogi included in the box would make for a really nice way to start the day!

I also noticed a tin of Sencha Green Tea Mints in Cherry Blossom Flavor. I used to work at a Canadian Tea store that sold these mints and they are seriously delicious. I thought they were no longer available, so I was very pleased to receive a tin my favorite flavor! The mints are gluten-free, vegan, and non-gmo. They are also sweetened with stevia instead of sugar, making it a mint that could be enjoyable for many people with diet restrictions, such as myself.

The box also contained the perfect items to meditate and calm your mind with. The calmbox included a box of Triloka Heart Chakra Incense Cones. (The heart chakra is located in the centre of the chest, and deals with the circulatory system, heart, lungs and chest area. Again, very fitting for someone with pulmonary hypertension!) The calmbox also included a small amethyst stone, with a little fact sheet about the beliefs and uses of the stone.

Another great item that was included in the August calmbox is 10 ml of CHILL essential oil blend by Frisky Fish. The small roll on is a mixture of lavender and peppermint- the perfect blend to help soothe you down. I usually roll my eyes when people talk about how great how essential oils, but I now see the light. I used the CHILL roll on when I had a terrible head cold and it helped clear out my sinuses! I am also wearing a little on my temples right now to help me relax.

Last but not least the box contained a bar of Tom's of Maine Relaxing Beauty Bar, which I am looking forward to trying because it smells amazing. (I love the smell of lavender, it is so calming and it reminds me of my grandmother who I miss.) The bar is made with calming lavender and botanical oils, vitamin E and olive oil to help relax you while keeping your skin moisturized.

Overall Thoughts

I would strongly recommend calmbox to anyone who likes to meditate, or is hoping to become more mindful and would like to promote calmness within their life. The box seems like good value for what you receive, and knowing that part of your purchase goes to a charity certainly helps you feel like you are also giving back to someone else. All the items are carefully picked. calmbox did a great job thinking about items that would be pretty user friendly to people with diet restrictions, along with picking items that made out of organic ingredients. I have reviewed several subscription boxes now, and based on my interests and lifestyle, calmbox contained the most items that I would actually use, and would be excited about using.

Sunday, 21 August 2016

Subscription Box Review: T-Surprise

What is T-Surprise?

T- Surprise is a monthly subscription box that promises to help you discover 4-5 different varieties of teas from around the world. The box also includes snacks and tea accessories.

How Much is T-Surprise?
It costs $25 (CDN) a month for subscription month.

T-Surprise August 2016 Review
The box was delivered within another box, so everything was shipped in perfection condition. The box is more petite than most subscription boxes that I had received, which is great if you are short on space.

The box included two lemon ginger energy bites. They are gluten-free, vegan and paleo- which is another score for me since I usually can't eat the delicious snacks included in subscription boxes. It can be difficult finding snacks that I can take with me on the go, so I am glad T-Surprised introduced me to a Canadian company that makes cleaner snacks!
A small sample of sea-buckhorn tea. The bag doesn't include information about the tea, but a list of information was included within the box. The write about this tea includes both its health benefits and history. After reading the health benefits of sea buckthorn, I am very interested to try it and see if i can benefit from its cardiovascular and anti-inflammatory benefits.
A sample of matcha. Again, the bag doesn't include much information but the piece of paper included in the box does give you a recipe to make a match frosted cocktail (and yes, it sounds delicious.)
There isn't much information available on this bag of tea, and because T-Suprise appears to be a Quebec based company, a lot of what is available is in French. This tea does not appear to be in the list that came in the box. There is another tea on the list that appears to be missing in the box. Perhaps I got the wrong sample of tea?

Edit: upon further investigation it appears that branding for the tea in question does not match the one on the list, but the description of it is correct.
Here is a picture of the list that included more information about the tea, along with two ready to steep bags of tea.

The bags of the tea on the list do not match how the two pictured look. I could tell them apart because I worked at a few tea stores throughout university, but I wonder if this would be harder for someone who is newer to drinking loose leaf tea?

The list includes information on how to steep the two bags of tea, both of which are to be made iced. Having the tea pre-measured and in a bag ready to steep makes it easier to make the perfect picture of iced tea.
This month's T-Surprise box also included a mini matcha whisk, a coupon for Cook It (that is entirely in French,) and a little card to help you guide on how to brew various kinds of tea.














Over All Thoughts
T-Surprise is a good value for all the little goodies that your receive. Some of the samples of tea were quite generous as well. There was also a different variety of tea within the box, which makes it appealing to anyone who is looking to try anything new, or is new to loose leaf tea. The iced teas smell delicious, and I was happily surprised to have received a snack (that is made in Canada!) that I could actually eat.

It should be noted that you would need something to steep loose leaf tea in to enjoy most of the teas in this box. Loose leaf tea is higher quality than bag tea, so this a worthwhile investment anyways! (Once you try loose leaf you can't go back to bagged tea, trust me.)

It would be nice to have more information directly available on the packages of tea.  Having the ingredients listed right on the bag could also help anyone with allergies, or restrictions due to medications feel safer while enjoying their tea. It may also be a good idea to include the website to the tea company right on the bag in case anyone enjoys it so much that they would like to purchase more.

Thursday, 18 August 2016

PHighter Friday: ​​Starése

#MiraclesHappen

Hello fellow PHighters! 
What an amazing privilege to share my story with you all today.
My name is Starése Coote and I am a 30 year old wife and mother, living in Somerset West, South Africa.

When I was diagnosed at the age of 27, my husband and I had only been married a year and were planning our futures without a care in the world. As you can well imagine, our rose-tinted honeymoon phase came to an abrupt halt with my diagnosis, but even though the last three years have brought many unforeseen challenges, it has definitely created an even stronger bond between us. I am so grateful for his unwavering love, support, sacrifice and strength.


My PH journey began like many others' with breathlessness that slowly increased over time and strange bouts of gasping for air even when doing mundane things like making the bed - clearly not normal, but when you consider yourself to be a healthy young adult with your whole life ahead of you, you don't pay too much attention to the initial symptoms.


At first I was misdiagnosed with exercise-induced asthma, but before I could even start the inhalers, my grandparents-in-law made an appointment with a Pulmonologist to get a second opinion. I am so grateful that they convinced me to go see a specialist because I was quite happy to just accept the asthma diagnosis and carry on. But thanks to their generous offer to pay for the appointment, I went and received a very different diagnos is: Primary Pulmonary Arterial Hypertension. As I am writing this I can still vividly remember how I felt when the doctor explained what that meant, leaving me in a pool of tears with a very devastating prognosis. Most of you reading this will know what it is like to be told you have a very short life expectancy and won't be able to have children etc etc, but I look back at the way I received my diagnosis and realize that the hopeless picture that was painted was not true at all! Three years on and I am living my life filled with abundant blessings - not least of which is my precious baby girl that I gave birth to a year ago! That's right - PH couldn't stop me from fulfilling my dream to have a baby!


At the time of my diagnosis my PH was very advanced and I had reached the dreaded syncope stage. I even lost consciousness once while lying in bed fluffing my pillow! That mini sit-up proved to be a bit too much for my struggling heart, so needless to say I was not in a good place.

We had to leave our hometown in Johannesburg because of the high altitude (Johannesburg is 1700m above sea level) and after a brief stint in the UK, we moved back to South Africa to our current home in Somerset West which is a beautiful coastal town in the Western Cape province.

While in the UK I started taking a very high dose of calcium channel blockers which proved to be just what my narrowing pulmonary arteries needed. My mean pulmonary pressures went from 62 to 27 in a matter of weeks - praise God! And just a quick note on the topic of faith - I seriously cannot imagine being on this journey without my belief in an Almighty God carrying me through the rocky terrain of this mysterious condition.

God has been so faithful along the way.


But let me get back to having a baby after being diagnosed with PH. I just want to say that I in no way advocate going against doctors' orders when dealing with an unpredictable disease and a decision of this magnitude, but this is my story of doing just that.


After my diagnosis, my desire to be a mom was crippling. I found myself deeply depressed and I hate to say this but I even felt a bit of resentment towards those around me having babies. It was a very dark time emotionally even though my body had physically made a remarkable recovery. I felt normal again and had no obvious trace of this disease ruling my life except for the medication I took each night. In a way it was harder to accept that I wasn't 'allowed' to have a baby because my body felt strong again. I honestly felt deep down that I can do this!

Initially my husband was not on board with the idea which is totally understandable - he had nearly lost me once and was not about to take any chances. If I'm honest, his resistance to the idea and my overwhelming belief that I would be fine put a lot of strain on our marriage, but after about 10 months of visits to my cardiologist that showed that my PH was stable and my heart back to normal, we finally and very prayerfully decided to fall pregnant.


Besides the usual pregnancy discomforts and 17 weeks of terrible morning (afternoon and evening) sickness, I had a very normal pregnancy. I was monitored very closely of course, but all the doctors were amazed how well my body coped!

I was admitted to hospital early because it was suspected that I might have developed a blood clot, but my time in hospital ended up being a really chilled experience of just relaxing before the birth.
It was decided that I would deliver at 37 weeks via c-section  which was scheduled for the 12th of August 2015. All I can say is that seeing our baby girl for the first time was one of the most exhilarating moments of our lives!

I went  straight into ICU for 24  which was just a precaution in case my heart struggled to get rid of excess fluid post delivery. Thankfully I cruised through ICU without any issues and was reunited with our perfect princess, Micaela Grace,  the very next day.

Micaela has just celebrated her first birthday and she is absolutely perfect! We are eternally grateful for the privilege of being her parents and for the miracle her life represents.

Over the past year my pressures have slowly increased again, so I will be going on new medication soon to bring it back down again, but I am trying not to fixate on the numbers. I have learned that the human body has an amazing ability to fight, adapt and recover. Don't lose hope even if you are physically in a bad place right now because things can turn around very quickly!

I love making connections, so don't hesitate to add me on Facebook or connect with me on my blog www.goingwithgrace.co.za

I have loved sharing my story and if you have taken the time to read through it then I am truly humbled. Thank you!

Keep on PHighting brave ones!

A little bit of faith and hope can go a long way.

Love,

Starése

Wednesday, 10 August 2016

Life With PH: Saying No, for Now, to Being a Parent with PH



http://pulmonaryhypertensionnews.com/blog/2016/08/09/why-pulmonary-hypertension-might-prevent-me-from-being-a-parent/

"I went to a doctor’s appointment in March to see a rheumatologist, who placed me on another medication that causes birth defects. Again, I was warned not to get pregnant. I did something I try not to do at doctor appointments. I began to tear up, and I told her that I wasn’t supposed to have children anyway and I am too scared to adopt because of my dreaded life expectancy. At that moment, she began to talk to me a way none of my other specialists have..."

Please visit Pulmonary Hypertension News to read more.

Friday, 5 August 2016

PHighter Friday: Elsa

My name is Elsa. I am a South African citizen, currently residing in Australia. I was born with congenital heart disease and a VSD was closed at age 10. During the procedure it was discovered that I had PH and I was left with a ASD that could not be closed due to the pulmonary pressures. I was not put on any medication at the time and was just sent home.
I suffered from frequent chest infections and in 1986 I ended up in hospital for 6 weeks with pneumonia and water in my heart sack. I nearly died but with the grace of God and my mother's persistence to insist a different antibiotic I pulled through. I started drinking Garlic and Parsley, and cod liver tables every day and until today I never had a chest infection again. Please note that this is my personal experience and in no ways intended as a medical opinion.*
I met my husband and got married in 1993. We were married for 5 years before we decided to start a family, but knowing the risks we consulted a intern specialist before and we were advised not to have a baby and rather seek alternative options. My husband's sister offered to be a surrogate mother and our baby boy was born healthy and strong without any health issues.


In about 2004 I was getting out of breath more easily and was sent to the city to see a specialist. He was brilliant and started me on Adalat, Spiractin and Aspirin. I was advised to start using nocturnal Oxygen too. This was the first treatment I got since 1983 when PH was diagnosed. It made a huge difference in how I felt and the oxygen at night would charge my batteries for the next day. I have always known my limits and would live accordingly but the new medication and oxygen just made my life easier.

I believe in living life as normal as possible and I have been working as a qualified hairdresser. When we moved to a rural location I opened my own hair salon from home, and worked full-time from 9-5 as a stylist. I had a full time maid that would help with chores in the house. This way I was free to work in my salon.

In 2011 PH south Africa was established and I was asked to be on the committee to raise awareness. We had a very active group, but in 2013 my husband was offered a position in Saudi Arabia and we moved to Jeddah. At first I thought the heat would affect me, but it did not, and living at sea level made a huge difference in how I felt. I had more energy.

I have joined the Saudi Association for Pulmonary hypertension as a honorary member assigned to Patient support. As a foreigner to a closed Muslim community that was a very big honour. I have learned a lot about the disease when I was invited to the International seminars we had in Oman, Abu Dhabi and Jordan.


In 2015 my pressures went up to 120 and I was put on Sildenafil as a treatment. I am using 75 mg of Viagra, and my pressures have since dropped to a stable 75.

Earlier this year we moved to Australia and I decided to have a career change. I have taken up a course in Pastoral Care and Dementia, and I am volunteering at the local nursing home 3 times a week.

I have always been a positive person, and I would not let my condition define me. I live life to the fullest, and believe that a positive attitude to live is beating the disease with at least 50%. If you look around you will see people that is worse off than yourself, and that keeps me going and motivates me. I live in a 3 level house and the stairs is a challenge, but I do one level at a time. I go for lengthy walks on a level surface and that is the best exercise for me. It is important to listen to your body and rest when you need it.

I am 43 years old now, and I am still going strong. Don't give up hope!

A doctor once told my mother I would not live to the age of 10....and gosh did I outlive that prediction. Live life to the fullest of your ability, and stay positive and strong. Thank God for every


day as it is a precious gift.

Take care and feel free to join my Facebook page SAUDI ASSOCIATION FOR PULMONARY HYPERTENSION - SAPH.


*The PHight or Flight Project does not endorse or recommend taking any medications, including natural supplements without discussing them with a medical professional. Please be sure to discuss your treatment options with a professional, such as a specialist. The PHight or Flight Project does not offer medical advice, and the opinions are based solely upon the writer.

Wednesday, 3 August 2016

Tips for Keeping a Pulmonary Hypertension-Friendly, Low-Sodium Diet

Many people living with Pulmonary Hypertension are on a no- to low-sodium diet. But trying to keep to such a diet can be very challenging, and create obstacles for dining with friends, even for preparing your own meals.
People with PH are advised to maintain a low-sodium diet because salt can cause water retention. The volume of blood that your heart has to pump increases when too much water is stored in your tissues, making a diet high in sodium dangerous for people with PH. Hearts with PH are generally working overtime, which is why a low-sodium diet is so important.
You should always talk to your healthcare provider and PH specialist about your diet. Your doctor will be able to advise how many mg of sodium you can consume per meal/per day, which will differ from person to person.
Below are some general tips I have learned for navigating on a low-sodium diet.

1. Tips for Eating at a Friend’s House

If you are invited over for a meal at a friend’s or family member’s house, be sure to discuss your dietary needs with them ahead of time. At first I found this difficult, and felt like a major pain. But I quickly realized that although PH is unique, having dietary restrictions are not.
  • If you are going over for a meal at another person’s house, you can always offer to bring a meal for yourself. That way, hosts aren’t obligated to create something special for you, and neither one of you will miss out on the bonding that happens over a nice meal.
  • Eat a snack or meal before heading out for dinner. If friends are serving salad before dinner, you can always snack on that and bring or make your own dressing if they do not have a low-sodium salad dressing available.
  • You can offer to come over after dinner for tea and dessert if it will be a longer dinner party.
  • Don’t be afraid to bring your own condiments or whatever you need to ensure you have a meal that is safe for you.

2. Tips for Dining at a Restaurant

When dining at a restaurant, be sure to let your server know that you cannot have salt in your meal. It is always easier to add a pinch of salt for flavoring, than to try and take salt out of an already prepared dinner. I find that many places also over-salt food, making it risky to eat prepared meals regularly.
When I go out to eat, I explain that I cannot have salt due to a very serious heart issue. I say this because I look healthy and, because of this, servers and chefs do not always take my request seriously. Again, it can feel a little strange explaining this, but I have gone out with friends who have celiac disease or are vegan, and they also have to make special requests. Failure to make a request understood has resulted in a few episodes where my heart felt like it was trying to self-destruct. Not fun.
  • Be sure to ask what the chef would recommend for your request.
  • Fine dining restaurants and cafés that serve food made from fresh produce will be able to better accommodate your needs than a fast-food chain.
  • Some places will be happy to make something off-menu for you. Your best bet is to get a protein that isn’t seasoned ahead of time, along with some veggies.
  • Ask for pre-made sauces with salt to be served on the side. (This way, you have better portion control of how much salt you consume.)

3. Tips for Preparing your Own Meals

Salt is hidden in everything, from butter to broth. Below are some tips for creating meals that will fit your sodium-restricted diet. Preparing food can be tiring and taxing, especially for those of us living with a chronic illness. Don’t be afraid to ask for help if needed. Take advantage of those days you feel well enough to cook, and freeze leftovers that can be heated up for a day where you don’t have as much energy.
  • If you are making your own meal, be sure to stay clear of recipes that require a lot prepackaged items. An example would be a curry recipe that calls for a pre-made jar of curry sauce for butter chicken.
  • Look for a recipe that will actually instruct you on how to make the curry sauce. You can alter any recipe as needed. Omit the salt completely, and substitute low- to no-sodium products for products the recipe calls for.
  • Avoid prepackaged foods and meals as much as possible, as they will contain more sodium.
  • Always try to use products that contain either no or low sodium, such as no-sodium broth and butter.
If you find that your meal is a little bland, there are several companies that make low- to no-sodium seasonings and sauces. One company you will be able to find anywhere is Mrs. Dash , which offers salt-free seasonings and marinades. Another, called Mr. Spice, creates organic, no-sodium marinades and sauces. Some super markets also offer their own brands of low- or no-sodium cooking products, such as broth.

*This post was originally featured on Pulmonary Hypertension News.

Tuesday, 2 August 2016

4 Things Not to Say to Someone with Pulmonary Hypertension

http://pulmonaryhypertensionnews.com/blog/2016/08/01/4-things-not-to-say-to-someone-with-pulmonary-hypertension/

"I found that after I was diagnosed with pulmonary hypertension, I received a bunch of off-brand advice. I realize the majority of what I heard from others was an attempt to make the situation better. Unfortunately, some of the words I received at times have been hurtful despite the well intentions behind them. I began to find it quite difficult to feel like I was biting my tongue in an attempt not to hurt other people’s feelings, even though their advice felt like it was minimizing what I was going through. As a blogger, I also became scrutinized online by strangers who tried to give me unsolicited advice and “words of wisdom” that simply do not apply to my situation."

Please visit my blog Life With PH over at Pulmonary Hypertension News to read "4 Things Not to Say to Someone with Pulmonary Hypertension."

Tuesday, 19 July 2016

The Worst Advice You Can Give to a Pulmonary Hypertension Patient

I’ve spoken previously about the day that I was diagnosed with pulmonary hypertension. There are a few moments that stick out from that day that will probably stay engraved in my mind for eternity. When I was first diagnosed, the doctor promptly gave me a life expectancy. It couldn’t have come at a worse time. I was 25 and just starting my career after working less than ideal jobs since the age of 15. I was obviously devastated to hear that my life was ending during a time it felt like it was just beginning. It felt like someone crumpled up everything I worked so hard for and threw it in the trash. As I started to cry my doctor said, “Any one of us could die at any time. I could die in a car accident.” This was the first time I heard this expression, but sadly, it wasn’t the last time.

As the days, weeks, months, and even two years have dragged on, numerous people have told me that anyone could die at any point, that the future is promised to no one. While I am aware of everyone’s mortality, living with a fatal illness is a very different experience than the advice I have been given. I know that the people who have said that “anyone could die at any moment” and “the future is promised to no one” are attempting to comfort me. However, these pieces of advice are often coming from a very privileged source. The doctors who have told me this are able to work full days and have a family. The people my age who have told me this are purchasing their first homes and traveling.

The advice that “the future is promised to no one” is often said in an attempt to equalize my situation with the rest of the population. Unfortunately, I am not like the majority of the population. I had about a one in a million chance of developing idiopathic pulmonary hypertension. Because the disease is considered rare, Canada does not have access to less invasive medications that have been available on the market for nearly a decade. Because PH is so rare, medications are very expensive, meaning that new medications are not always introduced in Canada, or are not approved for funding.
Pulmonary hypertension causes damage to the heart and lungs, eventually leading to organ failure and death. It is a progressive disease that leaves many people breathless and disabled. I myself am disabled because of pulmonary hypertension, and am oxygen-dependent for certain activities. I was on oxygen 24/7 for over a year after diagnosis. Knowing that PH is progressive, and that I might be that sick again, is very frightening.

While death is promised to us all, there is a difference between living with a fatal illness and living without one. Although I try my best to live in the moment, there is often a dark cloud hanging over me. I worry about what will happen to me. I worry about the slow progression of the disease leading to further disability and death. Life is filled with difficulties and tragedies. However, not everyone will understand the feeling of the dark cloud that living with pulmonary hypertension can put over your life. Able-bodied people who say that “everybody dies” in an attempt to over-comfort are forgetting one of the scariest things of living with a fatal disease: the progression.

In some ways, fatal illnesses are almost romanticized by popular culture. There are so many movies who have used this plot to write a love story. While I am very lucky to have someone who has stood by me through all of this, I know that having a fatal illness is not a selling point. It can create a lot of chaos and complications. My life revolves around medication, doctors’ appointments, tests, restrictions, limitations, disability, and oxygen. I know that not everyone is as lucky to have the kind of love I have in my life. Life-threatening diseases are scary, and sometimes they chase people out of our lives.

I often feel like I am living a fine line between quality and quantity in my life because I choose to do what I can while I can still do it. While all of us will someday die, not all of us will have to live with the burden of having a fatal illness, especially as a young adult.

What’s the worst piece of advice someone has given you about living with pulmonary hypertension?

*This article was originally posted to Pulmonary Hypertension News

Tuesday, 12 July 2016

Pulmonary Hypertension and "The Spoon Theory"

Do you know what the Spoon Theory is? Have any of your friends called themselves a Spoonie?
I didn’t know what the Spoon Theory was until a few months after I was diagnosed with pulmonary hypertension. I found out that I was Spoonie after reading more about the theory. If you have a chronic illness, like pulmonary hypertension, you might relate to the Spoon Theory as well.

Read more about Pulmonary Hypertension and "The Spoon Theory" over at Life with PH

Friday, 8 July 2016

Who Should Raise Awareness for Pulmonary Hypertension?

I am excited to announce that I have a weekly column called "Life with PH" over at Pulmonary Hypertension News. Please be sure to visit the source below to read my first entry about my experience wearing oxygen in public, and whether it helped raise awareness for PH.

Who do you think should be responsible for raising awareness for PH?

Thursday, 30 June 2016

PHighter Friday: Tina P.

 Pre-Transplant,
during my stable years.
I met Joel in high school when I was 16 years old. We were young, selfish, foolish, naïve 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 http://beadonor.ca/

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.