9 Fun Ways You Can Look After Your Emotional Health

Learning that you have pulmonary hypertension (PH) or another life altering disease can bring on many emotions.  Everyone affected will experience different emotions throughout their journey and cope with their diagnosis in their own way.  Each person will learn what makes them happy and develop ways to make the best of life and stay emotionally well.

What do you do on a daily basis to help your emotional health? The PH community has spoken out and want to share their experiences with you. If you feel you are having trouble coping with a chronic illness, maintaining your emotional wellness or just want to see what others are doing to stay well, check out the information below. These nine fun tips are sure to brighten your life.

1)  Stay in touch with family and friends.

Having positive relationships with the ones you love is an essential part of staying emotionally well. These people are your first line of support. Make sure to participate in family activities and friendly get together’s when you feel up to it.  Even a simple phone call can make your day so much better. According to Teresa McMillian, “Sometimes it is wonderful to just spend some time on the phone with a friend just chatting about nothing.”

2)  Surround yourself with support by connecting online.

In today’s world, there are many ways to connect with people going through experiences similar to you.

Attending a local support group meeting can help you meet a network of people and help you realize you are not alone. With busy lives, it may be hard to attend all of these support group meetings. Luckily, with modern day technology, we have the ability to receive support from many different channels directly from home. There are many ways to connect online. Community created Facebook groups are one popular way to connect online and are helpful to many people. These groups give people the ability to receive support almost instantly by connecting with people from all over the country and world who are going through similar experiences. People in these groups become close friends and are always there for each other. With such strong support opportunities available, no one should ever feel that they are alone in their journey. Join one of these groups today to meet your new friends! 

3) Make time for a pet in your life.

The health benefits of being with and around pets are substantial. Pets provide us with companionship and comfort when we need it the most.  People in the PH community love their pets! Pets are there for companionship when no one else is around and bring happiness when things aren’t going well.  Alice Jones-Jaehne says that her Maltese/Poodle has been great for her husband and herself and helps her PH. Alice says, “I walk him daily whether I feel like it or not because he needs it.” Pets not only bring happiness, they promote physical activity. If you can’t adopt a pet, find someone who has one and arrange a play date! Pets are sure to make you smile when you need it the most. 

Do you have a story about how your pet has helped you cope with PH? Visit PHA's website today to share your story and a picture of your pet to show how important your pet is to you!

4) Take time for yourself. 

Although family and friends are important, make sure you are getting enough time to yourself.  Sometimes your mind needs a time out and being alone is the best way to relax.

Stillness practices are something that can be done when you are alone. According to the Center for Contemplative Mind in Society, stillness practices are one way to encourage contemplation and spiritual healing. Stillness practices include things such as meditation and sitting in silence. These practices can quiet the mind and make it easier to take every moment as it comes.  Many people in the PH community say that meditation helps them get through the day. Learn more about the benefits of meditation to see it if is something that can help you.

5) Express your feelings and relieve stress through creativity.

Sometimes you may be feeling so many emotions and not know how to express them all. Creative expression can allow you to express feelings openly and freely.  

Haley Lynn is an artist who uses creative expression to express her feelings.  The beautiful art you are looking at are just some examples of Haley’s work. She shared her feelings about emotional wellness and what art does for her.

“Emotional wellness with any disease is so important because it’s the most ignored. Emotional pain isn't something you can just pop a pill for like we do with our bodies...it requires a lot more work. It needs to be taken care of just like our physical bodies. I've been an artist my whole life, whether its sketching, painting or writing. I don't really know why I do what I do, but it's more like something I HAVE to do to keep going. It's a release of energy. When it comes to my disease it's this area where I'll always feel comfortable...expressing current feelings, raising awareness and communicating. It's just me.”

Creative expression is a great coping tool. Other forms of creative expression include journaling, writing, photography, scrapbooking and crafting. Remember, there is no right or wrong way to be creative.  Just be creative in ways that allow you to express yourself, relieve stress and relax.

7) Be active if you can.

Everyone stays active in their own way. How do people in the PH community stay active?

Debra Webster does yoga with the help of a yoga instructor. Debra says, “Still being active keeps me going- I know I am lucky to be able to do that. I have a daily yoga practice that with the help of my yoga instructor I maintain a log and we track my progress. I really look forward to that 30 minutes in the early morning to get me going and set for the rest of the day.” See what a PH specialist had to say about alternative forms of exercise like yoga.

Patty Sandoval Sralla does pulmonary rehab. According to Patty, “Pulmonary rehab twice a week makes a big difference.” Although staying active benefits some people, it is not for everyone. Check out PHA’s website and talk to your doctor to learn more about PH and exercise. 

7) Enjoy the benefits of parks and recreation.

Chances are you have a park somewhere near you! Parks and recreation benefits the community by promoting health and wellness. America has celebrated July as “July is Parks and Recreation Month” since 1985. “July is Parks and Recreation Month” provides the opportunity to bring awareness to and spread the message about how important parks and recreation are.  The National Recreation and Park Association (NRPA) offers a wide range of programs and services. 

Parks and recreation is for everyone, including you! Parks and recreation departments are going above and beyond to make events and activities accessible to everyone. Measures are taken to make sure your diagnosis does not stop you from enjoying the benefits of parks and recreation. Aside from making facilities accessible to everyone, recreation opportunities are available for people of all abilities. Not all parks and activities are active. Passive activities include exposure to natural surroundings, museums, environmental education programs and much more.  Many communities have passive parks or plans to develop them in the near future. Passive parks provide the opportunity for activities such as relaxation, sightseeing, picnicking, etc. Many passive parks include art, sculptures, flowers and other things to ensure a beautiful environment.  There are tons of events and activities taking place this month in honor of parks and recreation month. 

8) Take the time to laugh.

Laughing is one of the most important things you can do. Make sure to laugh at yourself when you need to! On the topic of laughter, July is National Tickle Month. Who knew that tickling is an important part of staying well? Check out these fun facts about tickling .

9) Last, but certainly not least…Enjoy the little things in life

Sometimes, it’s the little things in life that bring us our greatest joy.  When things get tough, remember to enjoy the little things that life brings us. Beautifully put:

By Laura Johns, Patient & Caregiver Services Intern 

Going from Miles to Inches

It’s that last mile of the race – you feel your mouth getting drier and your breath getting heavier. You see the track getting smaller and your surroundings start to blur. Your legs have grown weak from the previous miles, and it seems like asking them to push through just one more is preposterous. Suddenly, you hear claps and cheers and chants. The blurred sidelines crowded with people start to come into focus in your peripheral, and you feel their encouragement rush through you. More claps, more cheers, more chants, and those spectators with cups of water in their hands stretched out, your dry-mouth is instantly cured. Gulping down the refreshing water as well as the crowds’ support, that last mile turns into a couple of inches. Your legs burst with energy, your lungs get a second wind, and your body is rid of defeat. Thousands of claps, thousands of cheers, and thousands of chants. You collapse at the finish, panting with a smile on.

Defeat is really only a state of mind, and your strength can build, crushing all negative thoughts with the encouragement and support of others. 

Receiving news about your life-changing diagnosis, a chronic disease with no cure like pulmonary hypertension, can trigger feelings of sadness and despair. Many challenges are faced while you’re figuring out how you’re going to live with these new limitations, ones that you may not have ever thought you would have to experience in your day-to-day life. It’s these challenges that can really start to weigh on a patient and make it seem as if their surroundings are blurring, their passions might be getting pushed aside, and their dreams may start to lose their focus, even slipping past their peripheral sight. 

Regaining the strength to reignite a thirst for life is heavily contributed to by community. Patients don’t have to crawl and climb alone, specifically those who are living with pulmonary hypertension, as there are organizations, just like Pulmonary Hypertension Association (PHA), that offer a multitude of resources. Support groups engage in conversation with those who may be experiencing the same challenges, but most importantly the same successes. Seeking out local specialists also provides security and comfort. Receiving care from doctors whose careers are dedicated to your specific needs can greatly improve the journey of finding the right treatments that work specifically for you.
 
Another facet that provides a more tangible support are products and tools that cater to a patient’s limitations. PoppyPocket, a product I created for my father who was diagnosed with colorectal cancer, offered him an alternative to the bulky fanny-pack that carried his transfusion pump delivering his medication. Since PoppyPocket allowed him to discreetly wear his pump underneath his clothes, he was able to sleep comfortably, without worry, and he was able to regain freedom in his mobility. All aspects of community, organizations, doctors, clinics, support groups, events, products, tools, etc. infuse freedom into every patient’s life. 

For those who are living with any illness, all of these resources are your glasses of water. All these resources are there on the sidelines of your fight clapping, cheering, and chanting. You aren’t alone; your miles of challenges and struggles will feel like inches, with the support of your community. 

Live boldly,

Julie at PoppyPocket. 

http://poppypocket.net/

http://poppypocket.wordpress.com/

https://www.facebook.com/PoppyPocketLLC?fref=ts

Photo credit:

Runners: http://www.flickr.com/photos/48932289@N03/4555346592/sizes/l/in/photostream/

When it isn't PH

I have this long-running joke that I drew the short straw in my family gene pool. In my twenty-nine years (ok, ok, thirty-one!), I have received diagnoses of tetralogyof Fallot (a congenital heart defect, you can read my story here), systemic lupus erythematosus, immune thrombocytopenia purpura, cervical cancer, acquired angioedema and other autoimmune diseases.

A few weeks ago while perusing Pinterest, I came across a quote that said,

“God gives us only what we can handle. Apparently God thinks I’m a bad-ass.”

Truer words have never been spoken… er- written.

Through all the things I’ve endured in my life, I’ve never had that ‘woe is me’ mentality. Quite the opposite, in fact. My mom has a photo of me in a hospital bed after my second heart surgery, arm stretched out thrusting my pretend sword in the air yelling just like He-Man, “I have the power!”

He-Man was my hero (no She-Ra for this gal!), and if he could defend Castle Grayskull from the evil Skeletor, than I could beat whatever came my way. And that is essentially how I’ve always tried to live my life.

It wasn’t until recently, two words were spoken by quite a few of my doctors that I began to get fearful of my diseases, and what they could lead to.

Pulmonary Hypertension.

As a pediatric cardiac ICU nurse, I know all too well about pulmonary hypertension. In my clinical experience, there were never any good outcomes.  That’s not to say that there aren’t any, but since I worked with such a fragile patient population, I unfortunately didn’t get to see any.

I also knew I was starting the pulmonary hypertension workup with two strikes already against me: a congenital heart defect and lupus, which are both causes of PH.

Once I reported to my rheumatologist that I was progressively getting more short of breath, it was a whirlwind of specialists and tests galore. I went to a pulmonologist, my cardiologist, my hematologist; I did PFT’s, chest CT’s and more blood work. All of it came back abnormal, everyone had his or her own opinion, but nothing could definitively say it was pulmonary hypertension or not.

All involved parties decided that a cardiac catheterization would finally put the question to rest. I hadn’t had a cath since 1987, right before my last open-heart surgery. I’d say I had a pretty long run before I needed one again.

Once the catheterization was scheduled, I had a few weeks to prepare. When faced with the possibility of a new diagnosis, I’m usually digging through my nursing textbooks, doing Google searches, and reading online discussion boards. Yes, I’m fully aware of my neurotic tendencies, but this time, I was actually staying away from most online resources (except the links sent to me by PHA!) to try and maintain a little sanity.

It wasn’t until 6 days before my cath that I got my hands on the radiologist’s final report of one of my CT scans. I’m thinking it was a big, fat mistake that I was given a copy, but I got it nonetheless. I went straight to the bottom and read ‘Conclusion: probable pulmonary artery hypertension.’

My calm, collected, make jokes demeanor went right out the window. I just knew it was pulmonary hypertension. And apparently, so did the radiologist.

During the pre-admission testing the Friday before my cath, I found out I would recover in the Cardiac Procedure Recovery Unit (CPRU), or the Cardiac Intensive Care Unit, which is actually where I’m a nurse. It never crossed my mind that going to the CICU was a possibility, further heightening my nerves.

You would think I would have remembered that all PH patients recover in the CICU after any type of procedure, but the more distressed I became, the less I remembered I was a nurse. All I could focus on was knowing where I woke up determined the outcome.

I’ll skip the details of my weekend before Monday’s catheterization; just know that my wonderful husband did everything he could to help ease my mind.

In the cath lab, the doctors and nurses were wonderful. I was given pain and sedation medications, but I was so nervous and fighting them. I was too scared to fall asleep, for fear of waking up in the CICU. Eventually, one of the nurses said, “Marla, go to sleep.”

So I did.

I woke up to a nurse practitioner telling me she was going to removed the catheter from my groin, and the next thing I know, I became very dizzy and the voices around me began to sound farther and farther away. I vaguely remember hearing someone yell, “I need Atropine and some help in here!” as an oxygen mask came down on my face.

Attempt number two at waking up, I was scared to open my eyes. I didn’t know where I would be.

I opened them.

CPRU.

Not only did I not have pulmonary hypertension, I didn’t require any type of intervention. I was shocked and relieved. And happy; oh, so happy.

Throughout my 6-hour flat-time recovery, my husband and sister kept me entertained, spoon-fed me, and coworkers came to visit. How wonderful it was to not have them taking care of me in the CICU!

A few doctors and a nurse practitioner from the Adult Congenital Heart Defect team came in and out, too. They all said the same thing; I had them quite nervous I would be going home with a pulmonary hypertension diagnosis.

Not this time.

I have the power!

By Marla DeFusco

Tweeting About Scleroderma Is Not Just About Scleroderma

By Karen Vasquez, www.themightyturtle.com

June 3rd, we’re going to get #Scleroderma to trend world wide.  I did not say, “might”, or “we are going to try”.  We will do this.  Scleroderma will trend.  Because as Yoda said, “Do or donot.  There is no try.”

Oh my God, WE’RE ALL GOING TO DIE!!!!

When I was diagnosed with scleroderma in 1994, I was told by doctors I could drink and shop all I wanted, because I was most likely gong to die. For a few years, that’s exactly what I did.
 I figured out that what the doctors said was partially true:  I was going to die.  What I forgot was, someday, we’re all going to die.  I know.  You’re shocked.  Someday, we are all going to die.  We are not going to live forever.  I know you just placed the back of your hand on your forehead, gasped and retreated to the fainting couch.  That’s okay.  I can wait…
Welcome back.  So, scleroderma and Sarcoidosis, along with God knows what else has been progressively killing me, for 20 years, so far.  Surprise!   I’m still here.   And it might not kill me.  I could have a total meltdown and cry that my life is over because my body is slowly hardening like the fiberglass epoxy and lead based paint I worked with while I was in the Navy.  I could have a melt down, wander in the street blinded by my own tears and get hit by a bus.  Living every day like it is your last is stupid.  I hate that song by the way.   I learned from my grandfather, never say goodbye.  It’s always so-long, because we will always meet again.  Here on this plane of existence or another.  Bite me Tim McGraw.   (Seriously, if you ever divorce Faith, give me a call and bite me.  I would totally be your rebound FWB.  Sorry Tim,  I can’t be in a committed relationship with someone who lives like they are dying.)

So I reached out and touched some people, and not on OkCupid.  Well, mostly…
In 2009, I finally started writing and reaching out to others.  Since that time I have become exponentially healthier mentally.  For years, I felt like my diagnoses had taken away my life.  scleroderma and sarcoidosis took away many things, but it did not take away my life.  Yes, I missed many things because of too many things medical to list here.  I have had pain and damage to my body that at times sends me to a quiet place to cry.  So, I learned to feel those feelings, express them, get up and get on with it.  We all have challenges in life and experience pain in many ways.  No condition is less valid than another.  And the past 20 years of my 42 (Yes, I do give my age.  I am proud of every year & every wrinkle.)  I have the greatest gift of all, my son.  It was a huge risk, I almost died, but what I had, could have happened without scleroderma.   A rheumatologist I had at the time was also pregnant.  She told me to watch my blood pressure because of my age.  I had a one in a million chance of complications.  So, of course, I had HELLP syndrome. I should really consider playing the Lottery.  Living a full life does not happen without risks.  We don’t have to have kids to live a full life.  We need to live our life in the now take step out of our comfort zone with some risks.

We have a lot in common, but we are not the same.Through the magic of the interwebs, I met fellow patients with different diagnoses, but shared experiences. No. I don’t think we should all fall under the same umbrella.  We need to maintain our identity to raise awareness about specific diagnoses and new symptoms.

Why June 3rd is not just about scleroderma.
Scleroderma is a classified by a group of specific symptoms occurring at the same time.  

    PulmonaryHypertension
    Esophageal Reflux 
    Interstial Lung Disease 
    Dyspnea
    Vasculitis

You know what?  You and I don’t have time for all of this.  Go to SclerodermaResearch.org, SclerodermaCare.org FESCA.org or SclerodermaCareFoundation.org.  Just google it.

Get to the point already.
Not everyone is on Twitter, but what happens on Twitter, makes the news.  And because all 7 billion of earth’s population is not on Twitter, that makes our goal of getting #scleroderma to trend, a possibility.  On June 3rd, getting #scleroderma to trend will be a reality and we need your help.

June 3rd is Monday.  Don’t people have to work?
Yes, a majority of people will be working.  The odds of one being in front of a computer are high.  Why not use this  noble cause to mask that Monday visit to I canHaz  Cheeseburger?

You can’t Tweet from you computer at work , you say?  You don’t have to break the rules, use your phone!
I know that all of you reading this post right now, would never dream of using work time to play around on Twitter, but I do know you could squeeze it into a break.  So ,when you step away from the hustle and bustle, and tweet from your phone. Download the app to your phone.   Follow the prompts.  Ask a friend.  Call tech support.  It’s FREE to tweet!  Use that alarm app you never use to remind yourself to tweet.

You can set up automated tweets, free!
If you would really like to get into the spirit, download Tweetdeck app to your computer.  Yes, it does work on a Mac.  I use it on mine, and unlike Hootsuite, it’s free.

Short on time or don’t know what to say?  No worries!  Retweet!
You can go to @TurtleMighty, @Short_of_Breath, @pixiecd13, @srfcure, @bouncetoacure, @TreatmentDiaries @sclerodermatt, or any Twitter person in this list: Let’s Set The Trend https://twitter.com/TurtleMighty/set-the-trend/members and Retweet anything with only the tag #scleroderma in it.  Stay away from anything that says miracle cures.  There will be snake oil.  But if snake oil sneaks in, it will only improve our numbers, so don’t sweat it if you accidentally RT some snake oil.  They try to look legit, but they are not fooling anyone.  (Yes, I am talking to you @Trips to Jordan!)

Why ONLY #scleroderma?
The goal of a tweet is to get the most info in the least amount of characters.  We can do that.  Our goal June 3rd is to get #scleroderma to trend. There is no second place, no runners up and no one organization or foundation directly benefits financially from this.  Make no mistake, non-profits have everything to gain by participating. We will ALL be a part of #scleroderma breaking through the confines of Twitter into the mainstream media.   Foundations who do tweet about #scleroderma get the bragging rights to say they participated.  They can get their name out there before World Scleroderma Day, June 29, so people know what scleroderma is, who they are ad what they do.  Non-profits can tell patients, caregivers and the world that they know that we are all in this together, understand that we all stand on the shoulders of giants.  Research of just one disease helps patients with different diagnoses.  One great example:  Beneylysta, the first FDA approved treatment for Lupus, EVER, is now being researched to treat Vasculitis:  a condition where the body's immune system attacks blood vessels. Sound familiar?  Yeah, it’s a condition of patients with scleroderma.  Like I said:  Different names, same team.  You are already on the team.  Play in the giant sandbox that is Twitter with us, June 3rd and set the trend.-
KarenVasquez