Wednesday 23 December 2015

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

Tuesday 15 December 2015

Cross Over Post: "I Want Kids, But My Progressive, Fatal Disease Means I Can Never Get Pregnant"

The website xojane asked me to do a re-write of an article that I previously wrote here (previous article can be found here 'Why I Shouldn't Get Pregnant.') xojane posts a lot of real stories from other young women facing a variety of different issues. Some are fairly light hearted, others are more serious. If you haven't been there before, check out their website. I have even found a few other articles by other young women with Pulmonary Hypertension.

If you are interested in reading the re-write of the article I wrote for xojane please follow the link: http://www.xojane.com/healthy/pulmonary-hypertension-kids

I would like to add that xojane changed my title to be a real bummer. They also took the liberty of adding some pretty lame tags to my entry like 'death.'

Here is a preview of the article:


"December 21, 2013 is the day that forever changed the course of my life.On this day, I was told that I had Pulmonary Hypertension. I had never heard of this disease before, and chances are you haven’t heard of it either because it is fairly rare.
The news I received was bad, very bad. In addition to being rare, PH is also progressive, incurable and fatal. The doctor came into the room and announced that I have 5, maybe 10, years to live. I was only 25.
I looked out the window of the doctor’s office and saw many of my plans for the future floating away. I was immediately advised against pregnancy because of the high mortality rate associated with it for women with PH. I hadn’t even had time to process all my other losses.
In simple medical terms, Pulmonary Hypertension is considered a contraindication to pregnancy. Pregnancy for women with PH increases the risk of death for both the mother and child."

Please read the rest here