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

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.

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

On May 24^th 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.

6 Tips for Facing Retirement as a Young Adult



In December of 2013 I was diagnosed with Idiopathic Pulmonary Hypertension. Although my symptoms came on quite quickly, I was only diagnosed once I was in severe right-sided heart failure and required supplementary oxygen 24/7 a day.  Months prior to my diagnosis I had finally started my first adult job after years of pushing tea and cupcakes. This was not as fun as it sounds, and finding a job with a Fine Arts degree in a tech city is no easy feat. 



I went back to work about 6 months after my diagnosis, which in hindsight, was way too soon to return to work. I was eager to return back to the job I loved, interact with people, and feeling like I was contributing to society again. More than that, I wanted a distraction from what was going on in my life. I managed to work part-time a few months short of a year, but realized I was in no condition to work. Unfortunately, it became clear that the stress and physical demands of working was too much for me and I had to give up my newly found career.

I really do have a bunch of 'island time' themed
outfits.

As such, at the age of 27 I had to retire, and I have been retired now for nearly a year. 

I wanted to share what I have learned in the past year about being retired in my 20’s. Retiring as an early adult is uncommon. Therefore, very little support and information is available for this kind of transition.

So aloha- welcome to the island. Grab your beverage of choice and your favourite Hawaiian print shirt. (If you don't have one yet, now is the time to invest in one!)



1) Netflix and Nap



Chances are if you have a chronic illness or a condition that is preventing you from working, you will need some down days. Don’t feel guilty for needing some time to take it easy on your body; this is part of the reason why you are no longer working. If your body is telling you that you need a down day, reach out and take it. Take naps as needed. I know my body needs extra TLC compared to most people my age because it works so much harder just to do simple tasks (like breathe.) 

It is okay to find a good show on Netflix and slowly marathon your way through. Just be sure that watching iZOMBiE isn’t the only thing you do for a month straight. Although majority of your family and friends will be at work or at school during the day, it is still important to use and limit your TV time wisely.



2) Stay Sharp



According to a study found here 42% of college graduates never read another book after university. After I stopped working for a bit I noticed that I no longer felt as mentally 'sharp.' In order to try and maintain my brain I read several books a month and write.


Books have been a great source of entertainment for me. Fictional books can allow you escape reality (if only for a moment.) Inspiring and self-help books can help you cope, and find hope. Trashy memoirs are usually an easy read and thoroughly enjoyable.



If you want to continue to learn on an educational level, you can always find books in your area of interest. iTunes also offers “The Open University” which has free lectures and content on various subjects. If you are really ambitious in continuing learning, you can try and create your own lesson plans which is a great way to still set goals and deadlines for yourself. (Some of us A type personalities really miss having that kind of structure.)

Books and lectures aren't the only way to stay sharp. You always find activities that incorporate    working out that brain muscle in a way that feels more like play. Puzzles, word searches and logical/spacial thinking work books are all a great way to keep that hamster in your brain on the wheel.

Documentaries also available on Netflix and YouTube for those days where you want to learn from the comfort of your couch and sweat pants.


3) Creative Outlet

Creative outlets are important to both develop and hold onto during your transition to retirement. Hobbies and interests are often things that we naturally enjoy doing. Sometimes our illnesses might take away our ability to do certain activities that you previously enjoyed doing. As such, you may find yourself on the hunt for new interests and hobbies.

It is really important to maintain a creative outlet. Being creative and having hobbies will still provide you with a sense of being able to accomplish a goal. I know that when I stopped working I felt a sense of loss. How could I accomplish anything if I didn't have deadlines and the demands of an office to meet? I learned to set my own goals, and to create my own accomplishments. Sometimes my goal might be to do one small drawing in a day, or to work on writing an article.

Having a creative outlet can also have many beneficial side effects. It may help reduce stress and anxiety.

Drawing and writing aren't the only ways to have a creative outlet or hobby. Hobbies can range from crafts, scrap booking, sewing and playing music to volunteering, playing cards and cooking!


4) Keep Moving

It is very important to keep as active as possible. Unfortunately, some chronic illnesses can make it difficult to stay active. Pulmonary Hypertension, for example can cause disability as it leaves people breathless. It also has the potential to cause dangerously low oxygen saturations. As such, it is recommended that you speak to your doctor to discuss the best way for you to stay active.

I am disabled due to having Pulmonary Hypertension, but try to stay as active as possible. I will try to walk at least a mile each day. Walking on flat land is easier for me, so if the weather sucks or I am having a bad symptom day, I will walk around the house until I reach the mile mark. I also try to get up to walk for 5 or 10 minutes if I have been sitting for an hour.

If walking without a destination sounds boring to you, you can always go to the mall or to a museum. Both provide climate controlled environments with flat land (and elevators if you are unable to do stairs.)

At the world's worst wax museum.

In addition to walking, I try to stay active by doing a 20 minute session of yoga or Pilates from the comfort of my own home. There are great and affordable apps for yoga and Pilates, and there are also free videos on YouTube as well. Depending on your abilities, you may be able to adapt these works out by doing chair yoga.


5) Treat Yo Self

Ah, the catch phrase that might ruin this generation (and my bank account.) It is very important to take care of yourself. Try to get enough sleep. Eat as healthy as possible, but also know when it is okay to cheat. Bottom line, you should be able to feel like you can enjoy your retirement. We shouldn't be punished for not being physically capable of working.

Make plans for whatever adventures you are able to do. This can range from trying a new cafe, going to a new museum or trying a weekend get away. Find ways to make yourself smile. It can be as simple as putting a bird feeder outside of a window.

6) Find Yourself

It can be very difficult to retire during what should be the prime of someone’s life. Even older people have a difficult time adapting to the transition of retirement because of how heavily careers and professions are weighed in with our perception of ourselves. In order to get to know someone, we often ask “what do you do?”

While many of us are or were very passionate about our careers, I have learned that jobs are usually on the more superficial layer in terms of defining someone. For example, if someone heard what my former title was, they might assume that I studied business. I never took a business course in my life. (It was all learned through pushing cupcakes, baby!) My real passion has always been being creative. I went to university for fine art (drawing, painting and sculpture) but now I use freelance writing as a form of being creative. So my former career did not really define me, and my current retired status doesn’t really define me either. I have always been a very hard worker, and very career driven (hence why I started a blog a few months after facing a heavy diagnosis.)

Facing retirement so young can certainly be challenging. I still have my days where I question my self worth because I can no longer contribute in the ways I used to, or desire. However, I am proud of myself for having such a big obstacle and still accomplishing everything that I have through freelance writing. My diagnosis, as cheesy as it sounds, has taught me a lot about myself, and even other people in my life. It has also pushed me to continue to try and find myself and be the person I want to be despite everything.

Subscription Box Review: Be Brave Box

This is my first subscription box review. I hope to do more in the future, and can hopefully have a give away at some point. I decided that I wanted to start reviewing subscription boxes because they seem like a great idea for people with chronic illness. When I was diagnosed with PH I was sent so many lovely flowers. Unfortunately, I had to throw out of the beautiful flowers that my friends and family sent me. As someone with a lung condition, it didn't seem like a good idea to have flowers. I felt so terrible because I knew that people who cared about sent me those flowers to let me know that they were thinking of me. Even worse, I know that they spent a lot of money on me. (I used to work at a flower shop and know how expensive arrangements can be.) I think that subscription boxes can be a great alternative to gift to someone with a chronic illness, or to treat yourself to. My best friend Melissa got me a 3 month subscription box for my birthday and I absolutely love getting a surprise each month! (Thanks Mel!)

Be Brave Box Review

Taylor, the founder of Be Brave Box

The Be Brave Box is a bi-monthly Canadian subscription box. It is a subscription box that is aimed towards people with chronic illnesses in the hopes of brightening their day. The box is said to be filled with about 5 surprise items that surround the overall theme of Be Brave Box.

Unlike other subscription boxes, the Be Brave Box was started by a 16 year old named Taylor and her father. Taylor has a rare and genetic form of Chronic Kidney disease, and was diagnosed in November 2011. She received a kidney transplant in August 11th, 2015 from her father. After her transplant she was house bound for 6 weeks because her immune system was suppressed. During this time she brain stormed the idea of the Be Brave Box. Needless to say, this box is created for people with chronic illness by someone who understands what it is like to have a chronic illness. Taylor knows what it is like to be in a hospital for days or weeks,  and the hassle of going to constant appointments, and the waiting that is involved for every appointment and medical procedure.

Taylor has stated on the Be Brave Box website that "There are always going to be good days and bad. I want Be Brave Box to be another good part of life because we just need more good in our lives."

Products received in box:
- Postcards: Three post cards made by a Canadian artist. Unfortunately, the artist is not named so I cannot credit them.
- Bracelet: Be Brave Bracelet made by Magic Mixes. The bracelet incorporates ancient Chinese symptoms that are believed to bring good luck, healthy, and protection to the wearer. The bracelet also contains Blue Howlite beads which are believed to be calming, and to help provide strengthening energies.
- Tea and Honey: Three sticks of honey, and three bags of Stash tea in pomegranate raspberry green tea, chamomile, and licorice spice.
- Bottle Cap Key Chain: made by a young lady whose daughter has Blouts disease. She creates bottle cap key chains to raise awareness for Blouts disease and other rare diseases.
- Lip Balm: Natural gingerbread scented lip balm made by HappyBeeLipBalm on Etsy.

Packaging: received in an oversized envelop sent through Canada Post. Items wrapped in red tissue paper with confetti sparkles. Personalized Be Brave Box sticker held items in tissue paper. Came with a product overview of what was in box, along with a welcome postcard from Taylor.

Cost:
- Canadian: $21 CDN for a one month subscription, shipping included. 
- International: $29 CDN for a one month subscription, shipping included. 

Over all thoughts:

The items in the Be Brave Box that I recieved

I think that the Be Brave Box is an awesome idea, and something that is needed within the chronic illness community. I admire Taylor for being so young and so ambitious along with all of the other obstacles that she faces. (I'd also like to mention that her website looks very professional!)  The packaging looked very pleasing, along with the card that detailed the items in the box. I like that this box is made by someone who understands what having a chronic illness can entail.

My favorite products are the bracelet (because of its positive message,) the honey sticks and the lip balm (it smells amazing and goes on light but offers a creamy moisturizer to the lips.) I really enjoyed that a lot of the products were made by independent people. As someone with a rare disease, I also appreciated that I got to learn about another rare disease through the key chain. I could see a lot of my other friends with chronic illnesses enjoying these items as much as I do.

I send a lot of postcards and letters to some special friends that I have made online who also have PH. The postcards contain some encouraging words, so they will be great to send out to any of my friends who are having a challenging time. The post-cards have no formatting on the blank side, and the Canadian artist is unnamed. As someone who went to art school, I really wish that I could credit the artist. I like that this box will encourage other people with chronic illnesses to send old fashioned letters. I have made a few pen pals through this experience with PH and I absolutely love moving away from technology, and sending some good old snail mail.

I believe I received one of the first Be Brave Boxes as it only launched in the new year, and is offered on a bi-monthly basis. Overall, I really enjoy the message and the theme behind this subscription box. The fact that it was created by a 16 year old is even more impressive. I thought that the items in the box fit the overall theme and message that Taylor was trying to convey, and I could see this box bringing a smile to someone's face.

Many people with chronic illnesses gear themselves towards more natural products after diagnosis. I thought that the fact that the box contained honey, and a natural lip balm along with a bracelet that contained a back message about a Chinese symbol for strength was very well thought of, and something that other people with chronic illness could enjoy and feel safer using. I would have liked to see organic loose leaf tea instead of Stash tea, although this might reflect more poorly on me than the actual box. I am a bit of a tea snob, but once you have loose leaf tea there is no turning back!

I know I got excited when I received it in the mail (it shipped fairly quickly as well.) I think that the Be Brave Box has a lot of potential, and I can see it growing in the near future. Thank you for letting me review the Be Brave Box, Taylor! It was an honour to speak to such an inspiring, young business woman!

To learn more about Taylor and the Be Brave Box please visit and follow the sites below:

http://www.bebravebox.ca/
https://www.facebook.com/bebravebox
https://www.instagram.com/bebravebox/

*If you would like me to review your product or subscription box please contact me at phightagainstph@gmai.com

Cross-posted: When a Doctor Said 'Hope Won't Help' My Chronic Illness'

An article I wrote is up on The Mighty​ today. Below is a clip of the article. Please feel free to read more at the source.

"The day that I was diagnosed with pulmonary hypertension, a doctor waltzed into the room and announced that I had five, maybe 10 years left to live. He had spoken to my parents first about the news. I looked over at my parents to gauge their reaction. Was this really happening? My mama said very strongly, “It will be OK, because we have hope, and we will get through this.” The doctor seemed almost angry by what my mama said. He nearly cut her off to say, “This isn’t cancer. Hope won’t help you.” That was pretty much the end of the conversation. Well… actually, it wasn’t.

I was going to leave this part out, but it didn’t feel authentic. After what the doctor said I threatened to end my life. If hope couldn’t help me… if there was no hope for me, how could I possibly face each day? I was instructed to go have more blood work and go home after my parents convinced the doctor I would be safer at home with them than at their ward. It was a few days before Christmas. None of this felt like the movies."

Please follow the link below to read more:

http://themighty.com/2016/03/pulmonary-hypertension-how-having-hope-helped-me-get-better/

The Side Effect That I Wasn't Warned About

"oh brother"

When you are first diagnosed with something, you are usually warned about side effects. Upon the diagnosis of Idiopathic Arterial Pulmonary Hypertension I was warned about side effects of the disease and side effects of the medication. PH can cause a variety of symptoms, or side effects, such has shortness of breath, chest pain, swelling, and heart failure. Some of side effects of some of the medications I take? Liver failure, cancer, anemia, low blood pressure (in all the wrong places,) head aches, stuffy nose. General malaise is probably a side effect of both the medications and the PH- and maybe life. I was prepared for all of that, but then something else set in.

Guilt.

I have suffered from both external and internal guilt as a side effect of PH. I feel such incredible guilt, although the feeling has faded as the years have gone by. I sometimes still find myself plagued by it. It is difficult to see how such a catastrophic that I had such little control over runs down hill. It effects so many other parts of my world.

I feel guilty because my life isn't the only life effected by all of this. Sometimes I find myself saying "sorry, I am sick." Apologizing for something that I have very little control of. Saying sorry, even though I know these situations will happen again. Unable to work, I still live at home and rely on my parents. I am sure they planned to retire soon, and I feel like I messed up their golden years because my golden years currently overlap with theirs.

Me living at home is also expensive for my parents. There are obvious medical costs, plus my crazy expensive food (because I eat mostly fresh and organic foods.) I see how my side effects so deeply impact them in various ways from socially to their well being. I hate that something that happened randomly hurts us all so deeply. I try to handle this human experience as graciously as possible, but it isn't always possible to sugar coat things. A positive attitude will help get you through the day, but it won't change the fact that I struggle going up a flight of stairs. I also think that you have to admit when things suck. It wouldn't be healthy to ignore your challenges, or to try and dress up a wolf as unicorn and hope that it doesn't eat you.

I feel guilty because the life I planned with my boyfriend is now very different. Sometimes I feel like I have very little to offer to the relationship. On paper, I feel like I kind of sound like a lemon. "Free to a good home: 28 year old girl-woman who can't drive, work or breathe on her own (for certain basic activities.) Very expensive special diet. Comes with Boston Terrier that you must also take care of." Hopefully from that line you can tell that I have a sense of humor, which is one of my selling points, beside my really cute dog.

Spencer has stuck by my side through my diagnosis, which I am so grateful for. (But it also has made me feel guilty.) He has so much life a head of him, and I don't want to stop him from following his dreams. This experience has really shown me what is valuable. Through all of this proverbial crap I have become a more supportive and grounded person. However, that doesn't change the fact that I probably won't have biological children. Or the fact that I am not sure if I will be comfortable adopting because a few doctors gave me the life expectancy of a hamster at the start of all this. I worry that my situation will effect what jobs he will want. I don't want him to take the job with benefits over a dream job because of me. I don't want him to have to take a high paying job that he hates because I cannot work. We were supposed to be partners. Equal partners with different strengths and weaknesses to balance each other out. I am strong as hell- but are these new found strengths valuable for "real life?" I feel like I am not apart of real life, but a mere by stander watching from the outside. I know he doesn't view me as an invaluable counterpart, but sometimes I wonder what I truly can contribute to our relationship.

I also feel a lot of internal guilt. At the very beginning of all of this I blamed myself for getting sick.

"I must have done something wrong."
"Healthy people don't get sick."
"Was my diet really that bad?"
"Did I really stress that much more than my peers?"
"What did I do so differently than other people my age that this happened?"
"Am I being punished? Did I get sick because I am a bad person?"
Those are some of the thoughts that I really struggled with. I felt as if that I must have done something wrong to get sick, especially because I was diagnosed with a rare disease. Overtime I have tried to accept that the perfect storm must have been going on in my body that allowed the disease to develop. I didn't do anything to "deserve" this, it just happened.

I believe that holding on to and hoarding negative emotions are not healthy. I have made progress releasing a lot of the guilt that I feel over being sick. Obviously life happens, and the feelings bubble up from time to time. However, it is important to handle those feelings appropriately. I accept that I didn't do anything wrong to get sick. There was probably nothing that I could have done to prevent it from happening.

I also accept that my parents love me so deeply and unconditionally. My parents helping me, taking care of me and going well above and beyond the call of parents of a 28 year old child are all an act of love. I know that them taking care of me, and supporting me isn't even a question, hesitation or thought for them. They want to take care of me. I know that they would want me to feel loved through their actions, and not like a burden.

I also know that Spencer loves me, and rarely sees the disease. He understands that although being sick dictates very important aspects of my life, the disease isn't who I am. He supports me through all of this, and sees who I am truly am- which is why he sees me as an equal and valuable counterpart to the relationship. I know that his companionship is something that he chooses to offer me, and he that this is another act of love.

It has taken me a few years to slowly release all of the guilt, and to slowly accept all of the love that others want to give me. I've learned that being sick isn't the time to start denying yourself love and simple pleasures. For me, it has become a time to indulge in all the good things that I can. For me, I try and find the beauty in every day.

(Please note: I refuse to refer to it as "my disease" or "my illness." I have no ownership over it, and it is not a characteristic or trait.)

Happy International Nap Day!

Sammy enjoying one of his many daily naps

Happy International Nap Day!

As someone with Pulmonary Hypertension I know how valuable a good nights rest and cat nap can be. I couldn't resist the opportunity to write about the benefits of napping for this special occasion.

I come from a family of troubled sleepers. Getting a good night's rest is something that I have struggled with since my youth. Throwing a sleepless night on top of dealing a chronic condition can feel like the ultimate recipe for disaster. A lot of people with conditions like Pulmonary Hypertension can tire easily because of all the extra work their body is doing to function. Having lower than normal oxygen levels can also be very tiring on the body. I know that when I don't have a good nights sleep I usually have a harder time functioning the next day. Sometimes it feels like I have a flare up of symptoms as well. Other times I can get a great night's sleep and still feel tired.

Along with struggling to get a good night's sleep, I have always tried to avoid naps. When I was younger my mom would try to encourage me to take a nap. I would always say that I didn't need one and try to wiggle my way out of it. My mom, being the smart lady that she is, said that if I didn't fall asleep after resting for 10 minutes that I was allowed to get up. This trick always worked, and I always ended up napping despite believing I didn't need one. This has been a habit that I have recently adopted again as an adult. I will often lay myself down for 10 to 15 minutes. If i don't fall asleep, at least I rested and relaxed. Making time to rest and relax and something precious that has been lost in our society. We often think that if we make time to surf the web or watch TV that we are making time to relax and rest, when that simply isn't the case.

Sometimes I feel like a need a good nap after having a big night the day before. I am always sure to set a timer because napping for too long can actually make you feel worse. The sweet spot for napping is 45 minutes or less. If you nap for more than 45 minutes you might end up feeling more tired. I enjoy 20 minute cat naps because they leave me feeling recharged. Power naps are great if you just need a little rest. It will leave you feeling refreshed (and in a better mood if you are like me and get reeeallllyyy cranky if you are tired!) If you decide that you need a 45 minute nap, you will benefit from going into REM sleep which can aid with creativity.
Casper has created 'Napping 101' to tell you more about the benefits of napping, and how to achieve the perfect nap. I tried to avoid napping after diagnosis. I didn't want to admit that I was tired or that I needed extra sleep, mostly because I didn't want to seem "sick." I felt ashamed of needing naps in my 20's. I have learned though that napping is for people of all ages and abilities. My boyfriend (who is younger than me) naps after playing hockey or having a late Saturday night. Napping is for everyone, regardless of their health situation. In fact, our bodies are designed to want to nap because human survival depended on alertness.

The benefits from napping range from an increase in productivity, to reducing stress and anxiety. The best times for napping are between 1 and 3 p.m. Avoiding napping after 4 p.m as napping too late in the day or evening can interfere with your regular sleep time. Make sure your nap area is a comfy cave with a comfy mattress. I always change into comfy clothes, hop into bed with my teddy bear, eye mask and of course...my supplementary oxygen! If you don't have an eye mask, I would recommend one for napping as it can help block out the sunlight. I also use my eye mask at night. I find it works as a "horse blinder" and encourages me to sleep. As I mentioned in a previous post, a bit of Badger Balm Sleep Balm hits the spot as well! The Sleep Balm has lavender and bergamot oil in it which is super soothing when trying to wind down to sleep.

Please see the Caper 'Napping 101' image below to learn more about the benefits of napping, along some helpful tips on how to become a napping expert!

Happy International Nap Day! Do you have any favorite napping habits? Share in the comments below!

My Experience: Depression and Pulmonary Hypertension

Facing a serious and potentially life-threatening disease is no easy feat. When I look at my life, it is now divided into two parts. Before diagnosis and post-diagnosis. I am also divided between who I was before this all happened, and who I am now. It has affected every aspect of my life, such as ending my career, to complicating my relationships with not only my partner but my parents and friends.



I was diagnosed with Pulmonary Hypertension at the age of 25, and it completely unraveled me. I had lead my life thinking that I had my whole life ahead of me, only to find out it may end out much sooner than I would have hoped. I was certainly aware that I wasn’t invincible, but being a young adult gives you a false comfort of time. Throughout my youth I was a bit of a loner, and worked very hard to balance a part-time job while attending university. I was preparing for later, for when I thought life would really get good. I was saving up to move out, started my first real career job, dreaming of getting married and thinking about having kids when I found out that I have PH. I feel like I was treating life as a lay-away plan, hoping to enjoy it once I reaped the fruits of my labour. What I really wanted was a simple life, and that is what I was waiting to enjoy. It feels like my diagnosis has taken many of those plans away from me. As you can imagine, it became very difficult to find anything to look forward to.



I have struggled with depression my entire life. I remember being as young as four or five years old the the first time I had dark thoughts. I was a very shy child and also suffered from crippling anxiety. I was often ill as a child and had spent some time in and out of the hospital. I learned in school that being sick and hospitalized often as a child can contribute to depression and other mental disorders later on in life. I began to really struggle with depression as a teenager. I was eventually offered medication from a family doctor. I politely declined, feeling it wasn’t the right choice for me. 



I was very hard on my self, and I never felt I was good enough. I am not sure where this feeling came from because my parents have always been incredibly supportive. I put an unreasonable amount of pressure on myself. Depression affects everyone differently. I had a hard time finding value in myself, or value in the life I was trying to make for myself. I felt like such a loser no matter how hard I tried at things. I felt unlovable and unworthy (even though I had incredible love from the people in my life.)

Unfortunately, I couldn’t see how good my life was for a long time. 

It took the brink of death to help me really appreciate life. This isn’t to say that life after diagnosis is a blessing, or that I no longer struggle with depression. After diagnosis I was recommended medication to treat my depression. I explained to my doctor’s that of course I was depressed, look at the news I had just received. I politely declined medication for treatment for depression once again.



The depression I now faced was paralyzing. I cried before bed and when I woke up, and sometimes I cried throughout the day. I barely spoke or ate. I became withdrawn. It was hard to find a reason to get up most days. That is the weird thing about living with Pulmonary Hypertension. I want to live so badly, but not under the conditions the disease offers to my life.

 I decided that I was tired of wasting my valuable time feeling so terrible- so I started seeing a life coach, and spoke to my alternative health practitioners about my depression.

Living with a life-threatening or chronic condition can understandably place a damper on one’s life. Suddenly it feels like we are in a world we no longer belong in because of accessibility issues, or the need for medical equipment. Sometimes it can be hard to enjoy aspects of life because of the all of the side effects of medications, the new equipment we need to stay alive, the pain we feel, the emotional burden we carry, and whatever else comes along with a disease.


I found myself having a hard time knowing who I was anymore. The disease weighed so heavily on my self-esteem. Suddenly, I felt and looked like a different person and it wasn’t a version of myself I liked. I would cry sometimes looking in the mirror, seeing how frail I looked, and having a nasal cannual attached to my face made me self-conscious. Prior to PH I knew who I was, and I had already created and obtained my own identity. After diagnosis I had to figure all of that out again. I am still trying to figure out who I am (and who I can be) now.



Unfortunately, there is still a stigma around mental illness and chronic conditions (like PH.) To the naked eye people with depression, PH, or both, can look ‘fine.’ A lot of symptoms are chalked up to being in our head, or easily fixable (which is often not the case.) What outsiders fail to realize is that we would much prefer not to have these problems. I didn’t decide to have Pulmonary Hypertension, but life had other plans.

 If I had my way, I would have preferred to have a life less complicated by disease.

I hope that this can bring light to the fact that depression, and other mental illnesses like Post Traumatic Stress Disorder (PTSD,) are very common among people within the Pulmonary Hypertension, (and chronic illness) community. We are constantly exposed to triggering environments. Such as the hospital, where routine tests are often performed. This environment, the treatments and the tests are often associated with negative memories and experience. I experience vivid nightmares where I wake up because of the sound of my scream, covered in sweat.  I also have panic attacks when I have to go back to the hospital where I was diagnosed. They left me in a wheel chair facing the wall while I cried.  This hall way is where I used to do a walk test. Needless to say it was hard to get good results when all I was reliving the worst experience of my life. Luckily, these nightmares and attacks rarely happen anymore- but of course I still struggle. It would be very difficult to go through many of the experiences of having a life-threatening illness and come out of unscathed.



If you are struggling, please do not be ashamed to find the right treatment for you. There are lots of ways to seek treatment. Talk to a doctor, family member or friend that you trust. When finding professional treatment, do not settle. Find someone who you have a connection with, someone who you trust and helps you feel a little safer. There are not only doctors you can talk to, but psychologists, social workers, life coaches, alternative health practitioners and so on. These qualified specialists can help discuss various treatment options with you as well, and help you develop coping skills.



Ironically enough, my depression is probably the best it has ever been in my entire life. I have found a regimen for myself that works well for me. I practice different alternative therapies along with meditation and yoga. I know that I am human and still allow myself a few days if needed to be sad. This usually happens after a PH appointment. It is very difficult to get used to, but I try very hard to live in the current moment. Even though things may suck (for lack of a better word,) there are still things around me that I can enjoy. There are also many things that I am grateful for. This experience has really taught me to appreciate things more, including myself. When I was first diagnosed I thought I shouldn't enjoy things until I got "better." Now I have learned to try and enjoy things while I can.

My life isn't perfect, or what I had hoped it would be. However, my quality of life was so bad before that it has helped me appreciate my health now. Sometimes I get caught up thinking about the future, which can be pretty scary. It is human to be scared, but you have to be able to find the right balance. I give myself a few days to deal with the grief, but try to let deal with my emotions and let them go. What I am going through isn’t easy, so I have learned to be more patient and kind with myself. This has also helped me learn how to be more compassionate towards others.  I am no longer hard on myself. I have also learned how to love myself, which I desperately needed to do in order to take care of myself and truly love those around me.



I hope that this can encourage anyone who is struggling to reach out. Please know that you are not alone. Reach out to someone you love and trust, and find the best treatment plan for you. Don't be afraid to speak up about how you are feeling, and be kind enough to yourself to find help.

xo Serena

How to Support a Friend with an Illness

Being a friend to someone with an illness like Pulmonary Hypertension doesn't come with a set of instructions. I recognize that as a young adult it can be challenging to try and support someone through an illness like PH, cancer, MS or even depression. It can be hard to know what to say, what to do, or to emotionally handle it.

I know first hand how difficult it can be for some people to maintain a relationship with someone post diagnosis. Some friends and family members stopped talking to me after I was diagnosed. Some have admitted that it was too difficult for them to support me, and that they had no idea what to say to me. At first I found their honesty frustrating. They had just assumed that it was too hard without even trying to talk to me once post diagnosis. As a young adult, I understand that other people my age may not have the experience or wisdom yet to know how to best support a friend with an illness. Even elders can lack this wisdom. The special kind of compassion and patience it can take to support a friend through a journey like this is not universally taught.

I recognize the unique set of challenges that supporting a friend with an illness can entail. I wanted to share what I have observed through my own challenges in the chance it can help provide insight to anyone else in a similar situation. It is okay not to know what to do or say sometimes. Illness can be a very difficult thing to face.

1. It is Okay to Just Listen

I have recently learned that I have been very guilty of making this mistake. I have a friend who struggles with mental illness, and we often discuss what we are both going through. Because I want to help, I have tried to offer advice in the past. It took sometime, but I have finally learned that sometimes it is okay to stay silent and just listen. Listening is often the best way to support someone. Your friend may not be looking for advice, but just someone to share their ups and downs with. Sometimes advice, even given with the best of intentions, can be counter productive. A solution that may work best for me may not be something that works for my friend. If you find yourself stuck in a situation where you have no idea what to say, it is possible that you are in a situation where it is best just to listen and offer your support. I think it is in most of our human nature to want to make things better. We desperately try to think of words and advice to help make things better. Unfortunately, there are certain situations where words simply fail.

I have had 'healthy' people try and give me advice in an effort to help. Even with the best of intentions, their advice is often impractical for my situation. As you can imagine, it can be a little silly to get advice about being disabled from someone who is healthy, works full-time and can go up a flight of stairs without getting short of breath. I remember a lot of friends and family trying to comfort me during my lowest of lows after I was diagnosed and was on oxygen nearly 24/7 for over a year. To say I was depressed feels like an understatement. In an effort to comfort me, many friends told me how they would backpack across the world if they found out they had a life-threatening condition and how I should see the world while I could. That is an absolutely lovely idea, but it is also unrealistic for a lot of people facing life-threatening illness. If you can't climb a set of stairs, how would you backpack across the world?

2. "That Sucks!"

This is very intertwined with tip number one. I think having a positive attitude can help alleviate some of the suffering that we are in control of. However, I don't think it would be human to try and ignore other feelings like sadness, disappear and disappointment when set backs happen. I also think that it is important for the person who is facing an illness (like Pulmonary Hypertension) to try and find the bright side in situations for themselves.
When another person tries to point out the bright side it can sometimes feel like their struggles are being undermined.
Again, I think it is human nature to want to help and trying to find the positive can feel like the right thing to do. It can be a good way to stay positive, but it is important to know when it is okay to be positive and when it is okay to be realistic. A friend or family member certainly goes through these struggles and set backs with their loved one who has an illness, but their struggles are different than the person with the illness. It can seem easier for a 'healthy' person to try and point out the positives in a negative situation because they usually cannot relate to what is physically going on. When things suck, it is okay to admit that things suck! It is totally okay to agree with your friend about their day or situation sucking.



Being positive, and looking for the bright side isn't a bad thing but be sure to be mindful of the situation. For example, pregnancy for women with PH is strongly advised against. It is very unlikely that I will have children of my own because pregnancy for women with PH has a high mortality rate. Sometimes, in an effort to be supportive, my family will say "you never know- maybe someday." I would rather have them agree that the situation sucks like my good friends Beavis and Butthead. Having them say that it is still possible, when it isn't, sort of feels like they aren't on the same page as me which I need in order to have their support. If they still think something is possible when it isn't, they cannot understand my loss.

3. Neutral Ground Hotel

If you got this reference we should be best friends. If you didn't, lets just pretend number three is just called "Neutral Ground." This may seem really obvious to some, but you can still talk to your friend the way you did before their diagnosis.

What did you used to talk about? The Bachelor? (I think Cailia is going to win.) Making a Murderer? (I am two episodes in- don't tell me anything!) You can certainly still talk about those things. Those are your interests that you probably bonded over together in the first place. I don't always talk about being sick, nor do I want to. I have only certain people that I talk about it with or share so much with. Talking about things too much can also make it more difficult to get over what is happening, and can make me relive a bad event too many times. Sometimes I want a nice distraction! I want to go out with my friends and have a good time. For me, this means that I enjoy their company and we talk about the things we used to and have a good laugh. (A good cry is okay too!)

A lot of things can change after diagnosis. I know that I have changed, but I still really appreciate and value catching up with a good friend over a cup of tea. It is something I did before that I can still do, and really enjoy! You can still enjoy parts of your friendship that you used to have, and still have.

4. Put Oxygen on Yourself First

I have only been on an airplane twice in my life. Once to go to Montreal, once more to fly back home. (I watched Lost too many times and cried during take off, but I felt like a bad ass flying home by myself.)

It turns out flight attendants don't actually give you instructions anymore on how to survive a catastrophic event on an airplane. Instead, you watch a movie. I learned that if you want to survive a crash, you must put an oxygen mask on yourself before you can help anyone else. If you run out of oxygen, you won't be able to help other people. This might feel like the most challenging step for a lot of people, but at the end of the day everyone needs to practice self love and care for themselves.

Supporting someone through a difficult situation like illness can be very challenging. It takes very selfless, caring and special people to hold our hands through these hard times. Sometimes people feel selfish for having their own needs, and try avoid tending to them. However, you need to take care of yourself in order to take care of others and to keep yourself well. Don't be afraid to take a time out and have a bubble bath, or whatever else you may do that makes you fee good. It might be a lot on you emotionally to support a friend with an illness, and that is understandable. Be sure to acknowledge and tend to your own feelings as well.

As a friend of someone with an illness, you may have your own set of challenges. Do not be afraid to talk about about your own challenges with your friends. Friendship goes both ways, and often times we want to be there to be support you as well. I like being able to support my friends because I like helping others, and feeling as if they can still rely on me. Your challenges may be different than ours, and that is okay too. Life happens differently to everyone.

Thanks for reading, and thank you for all my good friends and family members who support me.

xo Serena

"If you have a loved one who suffers, you can be a compassionate ally for him... Play the role of a bell of mindfulness. Your squeezing the hand is like a bell, lovingly calling your friend to come back to himself. That squeeze means, 'I am here for you. You don't need to do anything but breathe.'"
 

— Thich Nhat Hanh, No Mud, No Lotus, p. 42.

Preparing for the Holidays

Spencer telling me Star Wars spoilers

Hello everyone! Sorry I haven’t written any posts or had any PHight Fridays in a while. I hope to have more PHighter Friday stories in the New Year to share with all of you. If you are interested in writing for a PHighter Friday please send me a shout at phightagaisntph@gmail.com. From there I would be happy to send some examples, along with various questions to help with the writing process.

As the holidays approach I thought it might be nice to do a little post about how to prepare for the holidays. I know that although the holidays are supposed to be a happy to time, sometimes the holidays can be difficult for a handful of reasons. I was diagnosed with Pulmonary Hypertension a few days before Christmas, and I had my RHT on Christmas Eve. Needles to say I feel my emotional roller coaster go up and down a lot during the holidays. The holidays can also be physically demanding (even for people without a chronic or life-threatening illness!)


Here are four suggestions to help prepare you for the holidays;

1. Get a Good Night’s Sleep

Many people with PH (and other conditions) can feel worn out and tired more easily than the average bear. The holidays can be an exciting but also a very busy time. It is important to try and reserve your energy wisely.

The first step in keeping a good amount of ‘gas in your tank’ would be to get a good night’s sleep before an event, like New Years or any other holiday gatherings.

Here are a few quick tips to getting better sleep;

-To ensure you have a goodnight’s I would recommend turning off electronics (like your phone) 20 minutes to an hour before you want to sleep. The light omitted from many electronics can trick your brain into thinking it is daytime, thus making it difficult to fall asleep.
- Try to do something relaxing 20 minutes before bed. This will help clear your mind of unnecessary clutter and thoughts. What do you find relaxing? Some people prefer doing a bedtime/relaxing yoga routine before bed (you can find some for free on Youtube.com and Pinterest.) There are also various meditations and soothing noises for sleep that can help you drift off. Here is a list of some of the best-rated apps to help with sleep.
- Scents can be very soothing, which is perfect for helping you feel relaxed enough to get a good night’s sleep. Lavender is one of the mostly largely accepted scents associated with relaxing and a good night’s sleep. If aromatherapy and diffusers aren’t your thing I would highly recommend Badger Balm’s Sleep Balm. It is made out of essential oils, but comes in a wax rub form instead of a liquid. It isn’t messy, it is very easy to use, and it only involves one step. I rub a little bit on my temples when I hop into bed. I absolutely love the smell of lavender and bergamot in the Sleep Balm. (I am getting sleepy just thinking of it.)
- Read a few pages or a small chapter of a good book before bed.
- Don’t be afraid to nap for 20-40 minutes the day of an important outing!

2. Take Care of Yourself

Preparing for Christmas Eve by slothing around

Remember to take care of yourself. If you are not feeling up to something, ask if you can reschedule. Chances are everyone would feel happier knowing that you felt well enough to enjoy something more than you would have if you were tired, in pain, not feeling well etc. I know that many of us struggle with the associated risk of ‘cancelling’ plans but sometimes things are beyond our control. This is why it is so important to put yourself first. Good friends and family will understand. They would want you to tell them how you are really feel and what would be best for your situation.

Don’t hesitate to ask for help, or to let others know how to make a situation easier for you. Don’t be afraid to need to relax before, during or after an event. Don’t be afraid to take a day to recoup after a gathering. Take a sloth day. Stay in comfy and cozy clothes, cuddle up with a cup of tea and your favorite human, or animal (real or stuffed.) Have a bath, marathon a TV show, read a good book, draw, surf the web, meditate. Just relax if you need to (and don’t feel guilty about it!) PH or not, everyone is entitled to a good sloth day after dealing with all the business that the holidays can bring.

3. Eat Right

One year in high school my friend Aileen gave up sweets for lent. I vividly remember saying “what good is life without dessert?” A little dramatic, I know. I certainly eat better than I did in high school
(I am on a gluten-free diet, and try to eat mostly healthy goodies,) but I maintain the idea for myself that everyone needs a good treat everyone once in a while. My only advice is to pick and choose your dessert wisely. Make sure to indulge in something that you will really enjoy. At the end of the day, I don’t think I will regret any of the cupcakes that I have eaten. I thought about it more, I won't.

My favorite special treat are the cupcakes from Kelly’s Bake Shoppe in Burlington, Ontario. My poor boyfriend has to drive me all the way to Kelly’s on the regular. The cupcakes at Kelly’s (which I swear by) are not only gluten-free, but also vegan and made in a nut free facility. Kelly’s also uses whole ingredients along with organic and fair-trade ingredients. Even better than that, their cupcakes (along with donuts, cookies, muffins...) taste amazing. My boyfriend is a little on the picky side when it comes to my venture into healthier food, and he loves them! They are unlike any vegan/gluten-free cupcake you have probably ever tried. They are not good for ‘gluten free’ or ‘vegan’ cupcakes (which can be dry, or have a funny texture.)  They are just good. Okay- I rambled too long on this one. I really like Kelly’s. I think I should go before New Years to get some cupcakes for my celebrations.

Enjoying a cupcake at Kelly's

*Fun tip: their cupcakes freeze very well. Freeze some and keep them on stand by for a rainy day. I always treat myself to one after a PH appointment.

A very serious issue in terms of PH and dietary needs is maintaining a low sodium diet. People with PH are advised to have a low sodium diet because salt can cause water retention. This is a problem for people with PH because the volume of blood your heart has to pump increases when too much water is stored in your tissue. Hearts with PH are generally working overtime, which is why a low sodium diet is so important.

If you are going over for dinner at someone's house, make sure to let them know about your low sodium diet. I know that this is a pain the butt, so I will often ask if I should bring a meal for myself, or come over for dessert. You can always eat a meal before going over and have some salad with low/no sodium dressing while at your family or friend’s house. This way you’re not missing out on any bonding over dinner. Don't be afraid to bring your own condiments or whatever you need to ensure you have a meal that is safe for you.

If you are going out to a restaurant for dinner, be sure to let your server know that you cannot have salt on your meal. When I go out to eat I explain that I cannot have salt due to a very serious heart issue. I have to say this because I look healthy, and because of this, servers and chefs have not always taken my request seriously. This has resulted in a few episodes where it feels as if my heart is trying to self destruct. Not fun. Be sure to ask what the chef would recommend for your request. Some places will be happy to make something off menu for you. Your best bet is to get a protein that isn’t seasoned a head of time, along with veggies. Ask for pre-made sauces with salt to be served on the side. This way you will have better portion control for how much salt you do have.

Salt is hidden in tons of things from butter to broth. If you are making your own meal, look for low to no sodium products. Stay clear of recipes that ask you to use a lot pre-packaged items. An example of this would be a curry recipe that calls for you to use a pre-made jar of curry sauce for butter chicken. Look for a recipe that will actually ask you and instruct you on how to make the curry sauce. You can alter any recipe as needed. Omit the salt completely and add low to no sodium products that the recipe calls for.

If you find that your meal is a little bland Mrs. Dash offers salt free seasonings and marinades. (Southwest is my favorite seasoning. I put it on corn or potatoes with a bit of organic butter.) Another company called Mr. Spice creates organic, no sodium marinade and sauce. Their sauces are so flavorful you probably wouldn’t guess that they don't have sodium! I was very happy to find their products; they have been a total life saver for me. (Some of my favorites from Mr. Spice are the Honey BQQ sauce, and the Hot Wing sauce.)

4. Have Fun

Sammy posing in his Christmas
sweater.

This is one of the most important steps- have fun this holiday season! As I have mentioned before, I know how hard the holidays can be when you have something as serious as PH. It affects everyone so differently. We all have different abilities, and perhaps issues. This is my third Christmas since being diagnosed, and I am looking forward to (hopefully) having my best Christmas and New Years since diagnosis. I know that I am very fortunate to improve the amount that I have, and to have the energy level that I have. Things aren’t perfect, and things can be really hard- but I want to take advantage of good things when and while I can.

I have learned through this experience how important it is to utilize my good days. I’m going to say yes to opportunities that I feel well enough for, and want to do. I will also say no thanks to anything that sounds like it might be too physically or emotionally demanding (or that I just don’t want to.) Remember, it is okay to take care of yourself. Sometimes that means saying no to some invites. Your true friends will understand if you explain the situation to them.

If the moment approaches and you are feeling up for it, celebrate! Have fun, laugh, take pictures and make good memories. If you can’t stay up till mid-night on New Years have your own count down. Celebrate in your comfy clothes, or dress up. Stay in or go out. Do whatever feels best for you, and will bring you the most joy. Kiss your dog, partner, teddy bear or even a consenting stranger at a party for the countdown.

Wishing you all a very safe and happy 2016.

Serena xo

See some of my holiday fun on Instagram