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

A photo posted by serena (@worshipandtribute) on Apr 22, 2015 at 6:31am PDT

"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

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.

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.

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

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

"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.

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.

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.

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."