Living and Coping with PH

Living and Coping with Pulmonary Hypertension

Learning to live with PH can be an interesting journey to say the least. Making a place for this "uninvited guest" in your life that was not of your choosing. Now you are left with the decision of which way to go. You may experience many emotions ranging from blind fear to burning anger, guilt to bargaining with yourself. Either way, it's a process. From your relationships and how they may change and evolve to your own creative process or making plans for the future you are unsure of, to "will I ever work again" and the changing landscape of your friendships. We have tried to offer you something on each of these important subjects. Your Editor

Skill One

Letting your friends in both mentally and physically. Friendship is the greatest gift on earth and just having someone there to listen or laugh with, to share those fears and dreams with is irreplaceable. They often say a good get together with a friend over a nice meal and a few laughs is just as good as therapy. Learning to reach out and ask for help is sometimes difficult but people are usually only to happy to come to your assistance. There is no shame in asking someone to lend a hand.

Skill Two

Having PH or someone in the family with it can often be hard to cope with. Its important to have a place you can go to unload. Talking to a professional counsellor or even a friend can relieve anxiety and stress. Don't be afraid to ask your GP to do a depression scale test at a mental health review just in case you might need a little extra help. There is no need to suffer unnecessarily or try to be stronger than anyone would expect of you. You would be surprised at how much better you may feel.

Skill Three

Personal achievements can seem far and few between with a chronic disease like PH. You need to remember to celebrate the little things. Don't take anything for granted. Don't save the good china for special occasions & celebrate even the smallest of victories. We live in such a fast paced world fully of activity we are hardly ever still. Take time to reflect, to sit and listen to those sounds around you, to really appreciate the colours and the smells & open your mind to new possibilities.

Relationships with Pulmonary Hypertension

Although your relationships may change, a diagnosis of pulmonary hypertension (PH) does not mean that your relationships have to end. This e-learning guide holds helpful information on navigating all of your relationships as a PH patient.

Quick Tips

While maintaining strong relationships isn’t always easy, it is possible to find ways to ensure you’re receiving the support you need and the love you deserve. Here are a few tips to maintain healthy relationships with your family, friends, partners and yourself:

Take care of yourself before you turn your attention to others. Get plenty of rest, eat healthy, take your medications and keep a reasonable schedule.
Be forgiving of yourself. You are adjusting to a new life every day. Cut yourself some slack; you’d likely do so for others. You deserve it too.
Make time to do things you enjoy with friends and family.
Practice open and honest communication. Take the time to remember that you value those around you and that being in a relationship means taking time to work things out.
Reflect on your own feelings and needs so you can better articulate them to loved ones.
Be prepared for ups and downs. No relationship is perfect.
Don’t be afraid to ask for help when you need it. Therapists can provide help for individuals, couples and families, and may even have groups for people living with chronic illness.

These tips were taken from PHA’s Maintaining Healthy Relationships. Read the entire article for more helpful information. (www.PHAssociation.org (USA))

Working with PH

Working with PH may at first seem like a challenge, but it is possible! This guide provides tips to help balance working while taking care of your PH.

Tips for Working with PH

Know your rights. All employers have policies, and knowing your rights can help get through tough times if you have to miss work because of your illness. Consider meeting with a disability advocate to help you understand your Social Security Disability Insurance at work.
Don’t do it alone. Each state has an organization to assist those with disabilities return to work or assist with maintaining employment. Find your organization and ask for help – they are trained to advocate on behalf of the disabled.
Give yourself a break. Whether it’s a summer break, a week’s vacation or a personal day, take that time. Working with PH is not always going to be easy, and you need to have some “you time” every once and a while.
Don’t hide your illness. The whole company or office doesn’t have to know, but at least your direct supervisor and a close colleague or two should know that you are diagnosed with PH. This will help if you have an emergency at work, have to take a sick/personal day or need support on the job. Having someone in the know on-site helps when you’re having a not so good day or have to miss work.
Do it your way. Sometimes how others do the job may not be the way that you can do the job, so do what works best for you. Employers may be able to assist you with the right equipment you need to complete your job efficiently. This is another reason you won’t want to hide your illness from everyone at work.
Prepare ahead of time. Some mornings you may wake up to a bad PH day. By preparing the night before – or having a Plan B or even Plan C or D set up – you can still work despite not feeling so well. Lay out your clothes the night before, utilize a planner to schedule the day in advance and give yourself enough time in the morning before you leave for work.
Don’t be so hard on yourself. You may feel like you want to push through everything and be like every other employee, or even go beyond what’s expected of every employee. However, your body won’t always allow you to do that, and it’s important to remember that is okay. If you find you simply cannot finish an assignment because you need to take care of yourself, tell your supervisor and just do that. Sometimes being different, more creative and simply honest has a way of benefiting others as much as you.

Creative Expression

Medical research shows that creative outlets – whether they be through writing, painting, photography, or other activities – can lead to improved physical, mental and emotional health. Many patients utilize self-expression as a helpful way to cope with pulmonary hypertension (PH). These resources can help guide you towards your own form of creative expression.

Finding Ways to Relax through Creative Expression

Music Music can be therapeutic and stress relieving, whether you listen to it or create it yourself.

Journaling, Writing and Blogging Writing is something everyone can do - whether you share it with others or keep it to yourself.

Artwork Expressing yourself through art – such as painting, drawing sculpting – can give you an outlet for feelings that you just cannot put into words.

Photography If you don’t feel compelled to create with your own hands, capturing life through the lens can be another great way to express thoughts and feelings.

Meditation While meditation is not an outward form of creativity in the same way as the previous examples, meditation can help calm your mind and allow you to refocus your energy to tap into your creative side.

Self-Empowerment in the New Year

Make this the year to stick with your resolutions. Learn about PHA's resources that can help you empower yourself and make a commitment to a healthier you this year!

Maintaining a Positive Self-Image Pulmonary hypertension is a “whole life” condition that can influence everything in your day-to-day. Changes to your body, both real and perceived, can be difficult to adjust to, practically, intellectually and emotionally. Here are a few strategies that have helped others with PH reflect and improve upon their self-image.

Demystify Your Thinking – Without an awareness of the situations and circumstances that trigger negative thoughts, it’s easy to believe that you’re the only one who feels the way you do. By developing a critical awareness of the expectations you feel, it’s easier to recognize that your negative thoughts are just that – thoughts – and not direct reflections of reality.
Accept What You Can’t Change Today – While research has come a long way in the past two decades, PH is still a life-altering disease. Allow yourself to grieve for the dreams and activities you’ve had to give up.
Make Positive Changes Where You Can – Once you’ve accepted what you can’t change, it gets easier to zero in on areas of your life where you are willing and able to take control.
Call in reinforcements. Surround yourself with friends and family who make you feel good about yourself.
Be good to your body. Rather than focusing on the body you think you should have, focus on the body you do have. Work with your PH team to develop a nutrition plan, make sure you’re getting plenty of sleep, and don’t push your body too hard.
Stay active. Talk to your PH doctor about developing an exercise plan. Low-level aerobic exercise, even just a daily stroll around your neighborhood, can be good for your body and mind.
Celebrate your accomplishments. When you reach a personal goal or finish a project, take the time to recognize your achievement. Finding ways to formally recognize your successes can help you build new, positive identities post-diagnosis.
Change the way you talk about yourself. If you find that you’re putting yourself down a lot, challenge your negative thoughts by replacing them with kind words that don’t reflect unrealistic expectations. Using your feelings and needs as guideposts can be a helpful way of translating negative self-talk into language that’s more compassionate and realistic.
Stay in the moment. Your self-image, like life with PH, will have ups and downs. Your body, your health status, your outlook: none of these will stay the same forever. It can be helpful to think about every day as a new beginning, and appreciate each moment for what it is.

INTRODUCING PH PATIENT AND BLOGGER - SERENA LAWRENCE

Serena Lawrence graduated from the University of Waterloo 2012 where she earned an honors degree in Fine Arts. After she was diagnosed with Pulmonary Hypertension in 2013 she started the blog called The PHight or Flight Project where she began freelance writing and curating guest writer content. Serena enjoys a good cup of tea, little adventures and her Boston Terrier named Sammy. CLICK TO GO TO BLOG

4 Things not to say to someone who has pulmonary hypertension!

I found that after I was diagnosed with pulmonary hypertension, I received a bunch of off-brand advice. I realize the majority of what I heard from others was an attempt to make the situation better. Unfortunately, some of the words I received at times have been hurtful despite the well intentions behind them. I began to find it quite difficult to feel like I was biting my tongue in an attempt not to hurt other people’s feelings, even though their advice felt like it was minimizing what I was going through. As a blogger, I also became scrutinized online by strangers who tried to give me unsolicited advice and “words of wisdom” that simply do not apply to my situation.

1. “At least it’s not cancer.

”Pulmonary hypertension was recently upgraded to a rare disease, after being considered an orphan disease for quite some time. What does this mean? Pulmonary hypertension affects only a very small percentage of the population. For example, I have idiopathic pulmonary hypertension, which only effects about 1 out of a million people. In Canada, about 2 out of 5 people will develop cancer, and 1 out of 4 Canadians will die from cancer, based on 2010 estimates.

Based on these statistics, we can see that cancer is a more prevalent disease, meaning more people are aware of how devastating it can be. However, many pieces of literature about pulmonary hypertension state that it is worse than cancer. There is no chance of remission or a cure with the current treatments available for pulmonary hypertension. Treatments for pulmonary hypertension have advanced within the past decade, but unfortunately, it is still considered a progressive and fatal disease. Many of the treatment options also cause terrible side effects, and can be very invasive.

Can you tell I have pulmonary hypertension from my picture?

2. “You don’t look sick.”

Pulmonary hypertension can be both a very visible and an invisible disease. Some people with pulmonary hypertension may require supplementary oxygen, a mobility scooter and/or visible medication such as Flolan, which is administered 24/7 directly to the heart through a rather large pump. Other people with pulmonary hypertension may not require oxygen, or may have less discreet medication (like oral and inhaled.) Even when I needed to use a mobility scooter and oxygen, I found that people still questioned the severity of my diagnosis because I was rather young and still looked OK.

I think society has this vision of what a sick person should look like, and it is often someone who looks ill due to the side effects of chemo and radiation. Some of us may look totally “normal” on the outside. Pulmonary hypertension affects each person very differently.

You know that quote “be kind; everyone you meet is fighting a hard battle”? This rings especially true for people living with pulmonary hypertension, which is both very taxing physically and emotionally. It is difficult to adapt to such a heavy diagnosis. I was diagnosed over two and half years ago and my physical limitations still feel foreign and frustrate me to the point of tears. Feeling like I have no stability in terms of my future is also very confusing, and, well, devastating.

What most people assume being sick looks like.

3. “Eat, pray, love

”A lot of people who have never faced pulmonary hypertension will try to offer advice. I believe that most of the advice that I received (no matter how insulting or useless) is coming from a good place. People want to help. People want to be problem solvers.

One of the most infuriating pieces of advice I have received over and over again from strangers online and even people I know in real life is that I should go on some “eat, love, pray” mission. Dozens of people have told me that if they were me, they would travel the world and try all the exotic foods of the world before the worst of the worst happened.

Some people with pulmonary hypertension might be able to travel the world, others unfortunately may not. Why? Well, travel insurance would be very difficult to get. The whole nightmare of traveling with medications and supplementary oxygen. The chance of getting ill. Flying can be dangerous for some people with pulmonary hypertension because of the altitude. Oh, and many people with pulmonary hypertension have to be very careful with sodium intake. Too much salt can actually cause heart failure! Trying a new restaurant in town can be very scary; I can’t imagine trying to order a meal in another country. Traveling is expensive, and so is having pulmonary hypertension. And one more very important point…

Movies and books have a tendency to romanticize having a serious illness. It is important to remember that not everyone with pulmonary hypertension may be physically able to travel. Simply put, many people may not feel well enough to travel. The side effects of medications can be disabling, and this is without the physical limitations the disease may cause.

4. “Do this”

After diagnosis, I found that a lot of people who had never even heard of pulmonary hypertension tried to give me advice on how to get “better.” I believe that most of the strange advice I received has been from a well intended place. People want to be fixers and problem solvers, but sometimes, advice can come across as very hurtful (despite the well intentions.)

For example, many people associate the word “hypertension” with an unhealthy diet. Friends and strangers alike started offering me diet advice. I do believe that eating right can help with your overall health, but at the same time, pulmonary hypertension is very different than regular hypertension. There is no evidence that a certain diet can cause pulmonary hypertension. By the same account, going vegan and drinking green juices probably won’t be the magic cure I dream of. I was actually vegetarian before I was diagnosed and ate pretty healthy, minus the occasional poutine (did I mention I am Canadian?)

You should probably leave the diet advice to a professional. If someone wants your advice on something in terms of diet or spiritual guidance, let them come to you. It is OK not to have all the answers. Sometimes listening is the most helpful thing you can do!

More from Serena Lawrence.... Misconceptions about Pulmonary Hypertension.

When I was diagnosed with pulmonary hypertension, I learned that it was a rare disease. I had never heard of pulmonary hypertension before my diagnosis, and I learned that none of the people in my life knew about the disease either.

For those who might want, or need, to know, here’s some points to keep in mind:

  1. Pulmonary Hypertension is Different from Asthma

A few of my friends tried to sympathize with me when I was diagnosed with pulmonary hypertension by saying, “I understand how you feel. I have asthma.”

I’ve had asthma attacks, to the point where I was hospitalized for a week. From my experience, asthma and pulmonary hypertension are very different diseases, even though they both cause breathing problems.   I am not trying to downplay the severity of asthma. Asthma can be a very dangerous disease, but generally, it is a manageable disease.

People know what asthma is, there are far more medications to help treat it. There are more specialists and doctors available who understand and treat asthma. Although it can be life-threatening, asthma usually isn’t usually considered fatal.   Growing up with asthma, I was never really afraid of what my future might hold health-wise. I was never afraid that my asthma might stop me from doing something. It never prevented me from being physically able do a routine task, have a career, move out, or have children. Unfortunately, pulmonary hypertension has done all of those things.

While asthma and pulmonary hypertension are both diseases that can make breathing difficult, it is important to remember that pulmonary hypertension is considered to be much more severe and life threatening.

  2. My Lifestyle and Diet Didn’t Cause Pulmonary Hypertension

Most people know what regular hypertension is. Most people do not know what pulmonary hypertension is, and how it differs from regular hypertension.

I found that after diagnosis, many people thought that I had done something “wrong” to cause my pulmonary hypertension.   Some thought that my diet must have been bad, others asked if I smoked. (I never smoked a day in my life and was a vegetarian who tried to eat mostly healthy foods when I was diagnosed.)

Sodium can certainly make the symptoms of pulmonary hypertension worse, but my diet didn’t cause pulmonary hypertension.

Bad karma from another lifetime did not cause my pulmonary hypertension, either. (I wish I was kidding, but multiple people have tried to blame bad karma from a past life on my diagnosis.)

3. Out of Sight, Out of Mind

I spent over the first year after being diagnosed with pulmonary hypertension on oxygen nearly 24/7. I remember several months after I was diagnosed, I finally went out to a coffee shop with my boyfriend. I was at a point where I could finally take my oxygen off for small spurts while sitting.

My boyfriend took a picture of me sitting without my oxygen and I shared it online. I shortly received nearly 50 messages from friends and family congratulating me on getting “better.” That was an awkward conversation to explain to people — especially 50 times.   Not everyone with pulmonary hypertension requires supplementary oxygen, and sometimes people only need it for various activities like flying, sleeping, or walking.

The absence of oxygen doesn’t mean that someone’s pulmonary hypertension has gone away.

4. Just Because You Can’t See It, Doesn’t Mean It’s Not Real

Most people with pulmonary hypertension do not look sick. Even when I relied on oxygen 24/7 people looked at me with a puzzled face. I looked the same, minus that tank I was tethered to. If pulmonary hypertension is so serious, why do some of us look so good? (We’re cute, we can’t help it!)

Simply put, pulmonary hypertension is an invisible illness. Many people with pulmonary hypertension may look “fine,” but the symptoms of the disease and the side effects from the treatment can range in severity from patient to patient. Unfortunately, many people equate how good you look with how good you must feel.

Having to explain how serious pulmonary hypertension is just because it’s invisible can be very hurtful. Next time you see someone who looks “fine” using an accessible parking spot, don’t question their right to park there if they have the proper permit. Not everyone who is disabled requires a wheelchair. In fact, not everyone who is disabled requires medical equipment!

I might look like your average 28 year old, until you need me to bend down to pick something up or go up a flight of stairs.

What is the biggest misconception someone has said to you about pulmonary hypertension?

We face disability, disease and mental illness together!

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