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!

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