Get Up and Get Moving!

By Kiara Tatum

February is Heart Month, and it’s time to get active.  Having PH slows us down, but don’t let it prevent you from physical activity. There are plenty of ways to move your body throughout the day.  Here are six helpers to get you moving:

1. Complete 30 minutes of physical activity a day.  This 30 minutes can be two or three segments of 10-15 minutes if you can’t do 30 minutes at one session.  Chair Yoga and Pilates are great workouts for people with PH.  But talk to your PH doctor before starting any exercise regimen.
2. Go for a walk.  I know it may be cold out now for some, so wait until the warmer temperatures.  You can take a 30 minute walk around your neighborhood.  If you have a dog, take him/her on the walk with you. If capable, go on a nice nature walk or hike with family and/or friends.  The inclines and not smooth paths are challenging, but are a great workout. 
3. Plan physical outings.  Trips to the mall for window shopping can be great exercise for you, your family and/or friends.  It keeps you walking and talking, and not sitting on the couch watching television.  A couple of weekends ago my friends and I went bowling. It was a great physical workout for me, and I spent quality time with my friends laughing and attempting to bowl.
4. Do housework.  Vacuuming the floor, dusting, sweeping, taking out the garbage, doing your laundry are great physical activities to keep your body moving for a while. Cleaning can be hard work, so go at your own pace.
5. Turn up the music and dance.  If you love listening to music, try music that makes you want to get up and dance.  I love to listen to Taylor Swift’s Red album because it makes me want to move.  I have great fun dancing and singing along to my favorite songs.  Whether you’re good or bad at it, dancing means your body is moving and grooving to the beat.
6. Play.  Play video games with the Kinect or Wii for movement.  Playing jump rope, hop scotch, or just playing uses energy, and you don’t even realize because you are having fun.  Playing with my nephews and nieces always takes lots of energy, and afterwards I’m always ready for a long nap. It also gives me a chance to behave like a kid again and have some fun and laughs with my family.

Remember that doing something each day and keeping yourself moving is better than doing nothing and staying sedentary.  It can help your heart get stronger, especially for those with PH.  Do what you can, do something you enjoy, have fun, but more importantly get moving!

Another Love Story

By Kiara Tatum

 

February is American Heart Month, and it’s almost Valentine’s Day.  I don’t have a sweetheart for Valentine’s Day, but this year I do have someone in mind that I would like to show my love.  That would be me, myself, and I.  I’m always hoping that each year I will find someone to love me for me despite my illness, but I haven’t found that one yet.  Which doesn’t surprise me because how can I love someone when I can’t even love myself with PH.  So this year, I’m going to love myself. Sounds easy enough; however, with PH, I don’t always love this life.  How can I love myself when I don’t like my circumstances?  How can I love myself when I have to take medication throughout the day?  How can I love myself when I have to drag around supplemental oxygen?  How can I love myself when I have to change my medication pump every 3 days?  How can I love myself when I…?  So sometimes life can be hard and I just don’t want this life and I can’t love the person that is going through this journey.  But this year, I’m making it my goal to learn to love myself more.  Not just on Valentine’s Day, but each and every day.
To help I refer to the love experts… romantic movies.  The formula usually is boy meets girl; boy loses girl; boy gets girl back.  Within this scenario, there is always some conflict why the boy and girl can’t be together.  Sometimes the girl doesn’t even know the boy exists, or the boy is only a best friend to the girl, and the girl dreams of someone else that she is supposed to be in love with.  Well in this PH journey, the boy is actually yourself, and when you were diagnosed with PH you lost yourself, maybe you lost friends, your job, control, and your lifestyle.  PH is the conflict standing in your way to loving yourself.  So we have to find a way to get yourself back and that is the journey of love we are going on with ourselves.  The journey to win yourselves back and fall in love with yourself.  Here are 5 simple ways to love yourself.

1. Get to know yourself.  The best way to do this is to start journaling.  You are more honest with yourself when you know no one else is listening.  Using guided statements, quotes or questions such as what’s on my mind?; what’s missing?; what keeps me fulfilled?; what are my favorite things?; what is my life like now?; what makes me happy, smile, laugh?; who am I now?; list how you a wonderful person, list things you love, have a conversation with your 99 year old self, etc.  You can find more examples of guided journaling statements and questions online, CreateWriteNow or in journaling or books.
2. Spend time with yourself. It’s great to just have alone time.  I like to listen to music and dance, go for a short walk, watch a good movie on Netflix or On Demand, do something creative, or just think.  It’s great to know what makes you smile, laugh, and happy.
3. Create a personal visual board.  This is a collage of images or words from magazines, books, photos, or from any other materials that resonate with you.  Cut those images and words out and paste on a big poster board.  When finished, look at the board and see what it reveals about your personality and preferences.
4. Do something different.  If you are always doing the same thing, you might lose interest in yourself.  So try a unique or a different activity: take a yoga class, try a new hobby, etc.  You will start to reconnect with yourself and discover more strengths.
5. Redefine your life.  You have been diagnosed with a chronic illness, and it caused you to lose your past lifestyle.  You may not be able to work or attend college classes, but that doesn’t mean you’re not productive, not successful, or not valuable.  You have to redefine those words for yourself according to what your life looks like now.  You have to show yourself some compassion and not criticize yourself for your life not looking like it once did since your PH diagnosis.

I met me and knew me, but then I lost that old me when I was diagnosed with Pulmonary Hypertension.  By getting to know me and spending time with me the way I am now, it’s helped me to fall more and more in love with me and build my self-esteem.  That girl I stare at in the mirror is more than just a girl with Pulmonary Hypertension and a congenital heart disease.  Sure she has thin hair from the medication, and dark spots all over her belly from injection sites and tape marks.  Lips are dry and a bluish color, and she has to wear a nasal cannula that connects to oxygen concentrator.  That won’t change.  But she’s more beautiful than ever before because she’s got beauty that can’t be seen but shines from within.  She’s got strength, hope, faith and love.  She’s got strength that can climb the highest mountains.  She’s got hope that soars with the birds, she’s got faith that can conquer any battle on the field, and she’s got a love that dwells deep in her heart for herself and others.  She always has a smile and a positive presence despite the hardships of her life.  That’s who I love and I’m falling in love with me.

So sometimes it’s not about finding another person that you can love and fall in love with.  Falling in love with yourself and loving yourself more can be more empowering to you than you know.  This Valentine’s Day love yourself and spend more time with yourself.  Enjoy American Heart Month and Happy Valentine’s Day!

 

 

 

 

 

I Am What I Am Because of PH

By Kiara Tatum

The Latin proverb says, “Sickness shows us what we are.”  Like the proverb, pulmonary hypertension has taught me exactly who and what I am.  My life drastically changed since the onset of PH symptoms 7 years ago.  I graduated from college and started my career, and then my losses began: financial stability, friends, my home, my car, control and independence.  However, my diagnosis of PH has many positive outcomes as well as negative.

I’ve been on this rollercoaster ride of loops and upward and downward slopes.  Before my diagnosis, I thought I knew what and who I was: a licensed social worker, a daughter, a sister, an aunt and a friend.  I exercised regularly with a trainer and ate healthy food.  My plan in life was to open a private practice and focus on psychotherapy for adolescents with emotional and learning disabilities.  After my diagnosis, I had to overcome many challenges and obstacles.  I slept on a futon in my mother’s living room.  We moved to a bigger apartment, but then I shared a bedroom with my little sister and later-on, with my sister and nephew.  My income went from a good salary to less than half that, and then I had no income for months.  But I still had to pay medical bills, an electric bill, car insurance and other bills.  I was depressed, angry and felt like I was nothing.  What I didn’t expect was that this PH journey would be good for me.  

I learned what I am from PH,  I am strong;  I have the strength I need to get up every day and take medication, to deal with the not so good PH days, and to be okay with having PH.  The strength I gained from rebuilding my life, a different life.  No more sleeping on a futon or sharing a bedroom; because I moved to my own apartment and I sleep in my own room.  I receive Social Security Disability Insurance with Medicare and supplemental health insurance.  I also teach as an adjunct instructor at my local community college.  I may not be able to climb Mt. Everest, but I have enough strength to hike to Stone Church in Dover, New York.  This strength I have allows me to overcome any obstacle such as heart failure that PH puts in my path.

Kiara with mom, niece, and nephews

My faith deepened.  I learned to rely more on God for my strength and guidance.  His strength and power gives me strength and provides hope when I’m weak, tired, depressed and angry.  My priorities in life have changed from self-focused to other-focused.  I share my free time in service for others such as volunteering in my community, being a support group leader for PH patients, etc.  I also realized that I have more support than I thought, and I formed stronger bonds with family and friends.  My mom, sisters, nieces and nephews have been there for me through the hospital visits, doctor’s appointments, but also through the fun days of family outings.   My nephews and nieces carry those heavy oxygen tanks for me, attend my PH support group meetings, and we spend quality time together.  Staying in contact with close friends is important to me no matter how far away those friends live; Facebook and texting help.  I created new friendships, “phriendships.”  I met and talk to people with PH from all over the world, through PHA conferences, support group meetings, Facebook and even focus groups.  My “phriends” and I go through similar experiences, so we empathize with one another and don’t have to explain PH. 

A chronic illness changed my life, negatively and positively.  What about you?  What are some positive changes PH has brought to your life? Comment below.