Winter Time Preparedness

It's nearing the end of January, and boy has it been a brutal wintry season already! Blizzards, bitter cold, and something called a "polar vortex" entered into the vocabulary of over half the country in the last several weeks. Places that do not usually see very much in the way of chilling temperatures and feet of snow have been crying uncle!! People are already counting down the days until spring, but honestly, I would just love to see a day above 25 degrees!! I happen to live in an area notorious for dealing with the cold and snow, but that doesn't mean I ever get used to it! In my humble opinion, I would rather be in the middle of summer with hotter temperatures! But that is just me!!

So, how does one with PH deal with the winter weather? I posed this question a couple weeks ago to phriends, and I got some great responses! Since it's still pretty bad out there, and not letting up yet, here is a compilation of their suggestions!

~James: In cold weather, I stay in if I can. I read where I could experience pump problems in extreme cold temps, do not want to tempt fate. But if I have to go out, I run my 02 tubing under my clothes to keep it from freezing, and I bundle up in multiple layers. Also, have the heater in the van warming things up before I get in.

~Alex: For inclement weather, I always keep extra pairs of socks and gloves in my purse starting in October. Keep them in a ziplock so they don't get wet or dirty. Usually wear 2 or 3 pairs of gloves and socks due to Raynauds. Layer on tops and wear tights under pants or jeans. Always scarf up and wear a hat. But with Raynauds so bad, I tend to not go out when weather is bad.

~Rita: The cold here in Montreal has made it impossible for some of us PHers to go outside for more than a few minutes. When I absolutely have to go to an appointment, I wrap a scarf around my face and limit the amount of time (mere minutes) spent walking from public transport to the hospital door. Otherwise, I cab door to door.

~Cindy: I try to pick days to go out that will be the warmest of the week. Otherwise, I just wear coat, gloves, and hat.

~Jenn: I don't go out if I don't need to. If I do need to venture out, I dress as warm as effortlessly possible. Several years ago, I made the decision to stop caring about my appearance in the winter and just bundle the hell up. Leggings, warm pants, double socks, 3 shirts, bulky winter jacket, scarf, mitts, hat, huge winter boots. Even though it's hard to move wearing that many layers, I at least feel like I'm trying to keep warm. (When I see people wearing shoes in the winter I don't understand what they must be thinking - also t-shirts are incomprehensible to me during these months ((unless, of course, it is my first layering of shirt)). lol I do everything I can to try and stay warm. But mostly, I wait for spring.

~Stuart: Well I am probably not one to answer the winter question, but I always keep a blanket and some food in the car and make sure I have plenty of water at home.

~Stacey: I have Raynaud's too, and when I lived in the mountains, I made sure I had a warm hat and kept my core warm. Instead of wearing gloves, I wore special mittens that zipped open at the fingers with very thin gloves inside. Mittens tend to keep hands warmer than gloves. Neck warmer or scarf and ear warmer headband. Sunglasses to block wind. Ski type socks and waterproof boots with plent of good tread. Warmed up the car for several minutes prior to leaving the house and made sure I always had gas in the car. Always had a stash of air activated hand/foot warmers in extreme cases. Thin long underwear under all of my clothes (top and bottom). Hot drinks, salve for under my nose as I always got super dry, good lotion (Aquafor), chapstick, ice scraper with brush...I think that about does it!

~Erin: For winter which I always have, lol, I do soup for lunch regardless because it keeps me warm for the rest of the day and tea is my best friend besides my husband...I hope this helps.

~Bonnie: I get hubby to warm the car and always keep extra gloves in the car.

~Susan: On surviving the winter, here is what I do: 1. Wear Cuddleduds under my regular clothes; 2. wear mostly sweatsuits or warm sweaters; 3. use Hot Hands when needed; 4. use a space heater in my drafty house; 5. wear a coat that's certified for really cold weather; 6. cover my head when I go out.

~Neeta: Winter care: I am fortunate to have a wonderful husband who gives me door to door service. This comes in handy since my shortness of breath does not allow  me to wear heavy clothing to be comfortable and walk even a few feet! However, I will always cover my nostrils with a warm scarf so the air I breath is warm going into the lungs. MN (Minnesota) winters are very harsh. Even for 10' or less of walking to the door, I make sure gloves are on and a something covers my scalp. No long johns...or other heavy clothing in layers. Even my shoes are easy to take off - backless ones since bending to put them back on, is not a joke! I pray that my hubby outlives me so, selfishly, can be cared for him like a Princess!

I happen to follow many of the suggestions provided above in order to deal with the winter months! In the last couple weeks, I have only gone out twice, since the temperatures here have mostly been in the single digits with well negative degree windchills! When I do have to go out, and I'm by myself, I make sure my car is heated (thank you to the person who invented the car starter!!), and I wear layers. I makes sure I have my hat on, hood up over that, and scarf wrapped around my hood and my face. My gloves are on, and I'm ready to go! I also try to carry several days worth of my medications with me in case I get stuck somewhere. But mostly, I try to stay home where it's warm and if I really, really need something, I ask family and friends if they are able to get it for me.

And I also THINK SPRING!!!!

~Written by Colleen Schnell

Carson's Journey with PH+

    Carson Smith was diagnosed with Pulmonary Hypertension (PH) and Pulmonary Veno-Occlusive Disease (PVOD ) her freshman year of high school and has not let the disease slow her down. She is currently enrolled in a Masters of Public Health degree program.  Upon graduating this will be her second Master’s degree.

   

    Since we last heard from Carson in her “PHA Journey’s” article, she has faced a number of great achievements, difficulties, and eye-opening experiences, all allowing her to grow as an individual.

   

    In 2009, Carson graduated from Washington University with a degree in Anthropology. She worked for a year and used this time to adjust to her limits. During this time she was faced with the stress of having her files transferred from a children’s, to adult hospital, and meeting with new doctors who were not aware of her medical history.  Being a natural born athlete however, physical activity helped her cope. Soon, Carson was alerted that she was no longer considered sick enough to remain on the lung transplant list. The news left her with bittersweet feelings. While there was a breath of relief to know she was healthy enough to be kept off of the list, it also left her with a lack of security. Carson had already experienced the process of being added to the transplant list. With this background she knew that if one day she did need a transplant, she would have to go through the strenuous process of getting back on the list, and waiting for a donor.

  

  In August of 2010, Carson enrolled in Morehead State University in Kentucky where she pursued a Master’s degree in Public Administration.  By December of 2010, she found herself being rushed to an emergency room and later airlifted to a hospital in St. Louis. Doctors had discovered an accumulation of fluid in Carson’s lungs, leaving her sedated for 6 days and in the hospital for a total of ten. Carson had always considered herself lucky because she did not experience a lot of the things other PH patients did. She was never reliant on oxygen, and was always able to take oral medication. Upon being discharged from the hospital, Carson realized once again that while she was not on oxygen, and was able to continue in certain physical activity, she still suffered from a severely dangerous disease. Even with this setback, she graduated in 2012 and enrolled in a Master’s in Public Health program in August of 2012.

   While faced with the complications of living with a chronic disease, Carson has sustained a positive attitude, and has learned to appreciate the little things in life. She has maintained an attitude of resilience, and believes it is a trait that all PH patients should adopt. She states “it is so much better to try and have to quit, than to not try at all. You have to continue to fight, and use your support network.” For doctors, Carson believes you should “allow patients to test things.”

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