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.

Sometimes Plans Have to Change

By Kiara Tatum

Life doesn’t always go according to the plans, especially when you have PH.  You can plan for a great outing with your friends; maybe see a movie and have a nice lunch with your friends.  But with a chronic illness like PH, you may wake up that morning and feel not so good and have to cancel the planned outing with your friends.  Sometimes your plans just have to change.

I was recently hospitalized for five days, but I had lots of plans made.  I had a doctor’s appointment, meetings to attend, a meet and greet to prepare for at my church, prepare for the upcoming spring 2013 semester, a blog to write for PHA, and had to….  I had plans!  So of course when I started to notice that something was wrong, I ignored it.  I denied that something was wrong.  However, I needed at least one more day to get some things completed because I couldn’t stop just right yet.  But then my body knew it was time to go to the hospital, it was not letting me do anything.  I could barely walk from the living room to the bathroom without hugging the wall and feeling short of breath.  Well then I thought, I’ll go into the emergency room, get stabilize, and be out in and out.  That was doable.  So true because of these plans I had, I had certain things that had to get done before I could call ambulance.  So here I am ready to go to the hospital, and I’m calling around to people to ask if someone could come get the display board to finish it for me.  I figure if I couldn’t finish it; someone else could finish it.  I had everything laid out, so it would be real easy.  Well no one was able to do it for me.  And after an hour, more than an hour, I decided to call the ambulance.

I get to the hospital, and things don’t go according to my plans either.  I get put on fluids since I was dehydrated, and I get all the testing like blood work, chest x-ray, EKG, etc. completed.  The on duty doctor reviewed my results and says I need to be admitted.  Well that didn’t work with my plans.  So now I’m a little frustrated.  Okay so re-strategize.  I’m in the hospital a day or two which gives me plenty of time to be ready to teach for the spring 2013 semester, which is still doable.  After hours of waiting for a bed, I get admitted.  The ICU experience didn’t go according to plan either.  While in the ICU, what could go wrong at that moment did go wrong, so this prompted my PH specialist to have me transferred to his hospital as soon as a CCU bed became available.  So now I’m angry and furious.  I know I need to go, but this just really changed the plan. 

I have PH that drastically changed my life almost seven years ago, and now the one thing that has been keeping me afloat the last few months was going to be taken away from me.  I couldn’t teach if I was in the hospital.  Now my plans have to change again because of PH.  I couldn’t stand for it again.  These plans made were needed to make myself feel like I was productive and that I was like everyone else that worked and earned an income, and it was something that I loved to do.  I was angry, hurt and sad.  I started to panic, and I knew that I had to at least try to hold on to my teaching position.  I contacted the school and was informed that I could have someone cover the classes for me while I was in the hospital and the whole semester if necessary.  I also received a telephone call from a newly appointed dean, and he reassured me that whatever happened I would have a position at the school. 

So what can we do when PH disrupts the plans we have?  We can’t do anything.  Hardest lesson to learn, but it must be learned.  We have to just be okay with the fact that plans change.  If I wasn’t going to be able to teach this semester, then it was just going to have to be that I couldn’t teach this semester.  We must eventually accept and let go of the anger, the frustration, the let down, and accept that sometimes plans have to change.  Having PH means were going to have a lot, more than those without a chronic illness, of changes to our plans.  Those changes to our plans at first may seem to anger you, make you feel sad and hurt, but it will make you stronger and more creative.  It’ll all be okay.

A New Year, Let's Reflect!

By Kiara Tatum

It's a new year, and what usually happens at the beginning of the year is that people start to make new year's resolutions.  We feel that it's a time for new beginning, a time to start over, and a chance to make things better.  However, we still have Pulmonary Hypertension, and we still have a not so smooth journey ahead of us.  And a typical problem for everyone, regardless of chronic illness is that after a couple of months,--four months if your a little more dedicated--you stop working on your resolutions.  Going to the gym 3-4 times a week turns into paying for a membership that you never use.  I would tell you to throw away those resolutions; however, I know that they are important to us all and give us guidance over the next year.  What I would suggest is to look at some of these tips that may help you to accomplish those resolutions this year.

1. Reflect on last year.  Look at those resolutions that you developed last year, and give some positive and negative feedback to yourself: what worked well and what didn't work; did you learn or discover anything new about yourself?  Review the one's that you accomplished, and think about why those resolutions were accomplished.  Sometimes it's because they were realistic, clear, concise and rewarding.  Maybe those resolutions challenged and pushed you, but were within your limits to complete.  Then look at the resolutions that you didn't accomplish.  Were they unrealistic and too complex?  Were they too far beyond outside limits?
2. Know your strengths, weaknesses and limits.  I'm good putting together a lesson plan; however, I can't seem to keep my apartment organize.  I can walk two blocks without stopping; however, I can't do an hour Zumba workout. I can design a great calendar/schedule; however, I'm such a procrastinator that the schedule doesn't really help.  I'm sure over the years that you have discovered what your strengths are and what your weaknesses are as will as your limits.  So don't forget about them when creating resolutions.
3. Let go.  Sometimes we hold on to the past and that feeling we have no control over.  It's time to let go of it and move on.  If I'm holding on to the anger of having of PH, then I'm never going to be able to find out how much stronger I have become since my diagnosis.  Whatever has been said to you or done to you in the past; learn to forgive and let go.  Sometimes journaling about it the situation, writing a letter that you won't mail out, talking to person in an empty chair, or even crying it out can help you to release the feeling and finally let go of it.
4. Pick a word for the year.  It's a creative way to do New Year's resolutions, but with just one word.  This chosen word will be your focal point throughout the year, and it will guide you on your not so smooth journey. Read more at Create Write Now.  If my chosen word was Hope, then Hope will guide me throughout the year.  Whenever something seems to hard or challenging; I will remember to have hope and will get through it.

I hope this tips will help you through your New Year's Resolutions.  And remember just because it's a new year, and you have a fresh start; it doesn't mean that it will be an easy and smooth journey.  Throughout every year, we have our ups and downs, so just don't be too hard on yourself.  Learn from it and let go!  If you have tips you would like to share with others, please post in the comments.  Happy New Year!!!

What Are You Eating?

By Kiara Tatum

One of the many hardships when dealing with Pulmonary Hypertension is the diet and nutrition.  As young adults, we tend to be on the go and just grab something that's quick and easy.  However, as you are aware, most of us have to restrict our diets to either low carb diets, low sodium diets, and we have to watch our vitamin K intake.  It's uncomfortable to be at out with friends knowing that you can't eat and enjoy majority of the foods listed on the menu.  Since the holidays are upon us and many of us have been eating since Thanksgiving, I would like to share some tips to eating that have helped me to watch my sodium levels during this holiday season.

1. Limit your fast food.  As I have been doing my holiday shopping, I have been out for hours.  I try to eat before I go out and bring a granola bar with me.  This way I'm not eating at fast food restaurants while out and about.  Although if you do have to eat out, look at the nutrition menu for the restaurant.  I find that a hamburger and small fry no salt is high in sodium; however, not as bad as Chinese food or a cold cut sandwich.  If you can eat one slice of pizza, then you can also do that as well.  As a drink for each meal out, get a bottled water.  No extra sodium to worry about counting with water.

2. Don't add salt.  Don't use the salt shaker after a meal has been already cooked.  And if your cooking your own meal just don't add salt.  In fact, I stopped buying salt years ago.  I only use Mrs. Dash to add flavor to my foods, and I don' miss the salt. Also cooking with onions and peppers as well as different fresh herbs adds flavor to your food instead of salt.

3.  Say no to processed foods.  This means no mac and cheese, flavored noodled soups, flavored rice, etc.  And don't put cheese on your burger or your sandwich.  It will save you a lot of sodium. A slice of cheese can be almost 340mg of sodium alone.  There are some snacks you can find that have no or little sodium.  I found potato chips that have 15mg per serving of sodium and with a sandwich and a bottled water, I have very filling and tasty meal.

4.  Do your own cooking.  It's hard to cook especially if you're only cooking for one person, but leftovers are good if probably stored.  Using meat that isn't already seasoned or meat that isn't already cooked is best since most of those meats will have higher levels of sodium.  I've also found ways to make a low sodium pizza meal that isn't too bad.  Cooking my own meals allows me to be creative and learn more about cooking healthy meals that my eyes, taste buds, and stomach will all find savory.

5. Read food labels.  It's very important to read food labels for the amount of sodium that's listed.  This will help you in all areas of nutrition and eating healthier not just with sodium levels.  I found a spaghetti sauce that's 40mg of sodium per serving.  So with whole wheat spaghetti, ground beef and spaghetti sauce, I have a meal that's about 120mg of sodium.

6. Use a smaller plate.  If you are going to a holiday party or dinner at family's home, then ask for a smaller plate.  Especially since you won't be sure what was added to the meal for flavor.  Most plastic plates are smaller than a dinner plate, so if they are plastic plates, then you should be okay.  And don't pile up your plate with lots of food.  If you put food all over the smaller plate, then your eyes will think you have a lot of food.  Either way your stomach will get nutrients and be full.  And don't go back for seconds.  Wait 2-3 hours before eating again, which means no dessert right after you eat dinner.

These are just some of the tips that I have learned over the last years about eating healthier and keeping low sodium levels in mind.  For more information about pulmonary hypertension and diet and nutrition visit PHA website.

Life ... and Death

By Michelle Joy Guerrero

How bad could death be?

Life.  Death.  I've never tried looking at these as two intertwined points in our lives. I've always thought that they are two separate dots: one being the starting point, the other being the end point.  Never did I consider thinking about that one straight line connecting the two.

When I learned that I have this disease, death became my monster.  I feared that it may be too close, or, if not, this disease might be an end point stretched well enough to make a dash – a prolonged death, a lifetime uselessness.  I feared that I may not become anything but a parasite.  I spent 3 sleepless nights thinking about how my life would unfold from then on, and then a lot more days in denial that this has no cure.

But there are things we have to accept, and the first one of them is the fact that Pulmonary Hypertension has no cure and that, second, in the natural course of things we will die from it.  It’s only after that time of acceptance that we can really move on with life.  It’s only after we stop fantasizing that we will all be cured from this that we can clear our minds and think about how we want our lives, to be rewritten by us, and not by this disease.

With this disease, we turn 180 degrees and change our lives in an instant.  It’s sometimes one of the things we believe to be negative, because we have to lose and quit a lot of things.  But death has its own beauty.  We live our lives thinking that soon, all that we have may just disappear: our careers, our independence, our active lifestyles, our adventures.  All the things we have now and all the things we want to have later, will go on the same day our hearts and lungs give up.  But once we think a little deeper than all these worries, we discover that the only thing that we worry about is life.  We think about how we would all live despite having a disease that threatens us.  We start to lose interests over things of material values, and instead start living  a life we want to look back to on our death beds.

If I’m going to die next year, do I have to cry for a year or run away from the fact that I am indeed dying?  What do I gain if I cry?  Does life become better if I run away from it?  I gain nothing, and life does not become sweeter if I run.  It only becomes worse, and my condition will only worsen.

Everyone dies.  Even the richest man dies.  Even the greatest doctor dies.  The only difference between everyone’s deaths is how much one is prepared for it.  But how do we prepare for it?  We live in the moment.  We pursue careers we want to pursue.  We spend time with people we love.  We read books we've always wanted to read.  We listen to music.  We go out and get to know our neighborhood.  We watch movies we used to have no time for.  We tell people how much we love them.  We say sorry and thank you to people that deserve them.  We laugh, and we laugh harder.  We do things that will be good for our body.  We eat proper meals with our specific diet.  We exercise to keep us fit.  We take our medicines on time.  We sleep well.  We live our lives thinking and making sure that we don’t have regrets floating in our heads when it’s finally our time to go.  We do things that make us happy, and we do all the things we could to make sure our disease does not ruin our lives.  We live ensuring ourselves that when that time comes; we peacefully say it’s time.

I used to fear death, until I came to think that it’s too shallow to look at it as the last day everyone refuses to face.  Although it had always been the end point, the only thing that really matters is how beautifully and smoothly we've drawn the line from start to finish.  And although we know that there will always be an end point in the future, we are never really sure how close it is.  So go on, draw the line beautifully until you reach the end, or, better yet, draw the line as beautiful and long as you can so that when the day comes that PH finally has a cure, you can simply draw over that point and move the final point much, much further.