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.