The Unpredictable Road Ahead

By Kiara Tatum

It’s the New Year 2014, and we made it through the obstacles of 2013.  However, it doesn't mean that 2014 is guaranteed to be easier than the previous year.  Life is a journey or perhaps it is more like a cross country road trip with family and/or friends, and you will have great moments and memories along the trip. However, you will also run into bumps on the road. Whether it’s a flat tire, running out of gas, overheating of the car, disagreements along the way, it’s definitely not an easy trip. Having PH makes our journey a little bumpier than others.

2013 was a very difficult year for me. I was grieving a loss of my good friend, who died from PH complications.  I had built up anger, and I was feeling very depressed and hopeless.  Also, my family grew with a brother-in-law and his family as well as a new baby nephew.   I started teaching two classes a semester at the local community college, so I had stress from work.  I started dating which is another posting in itself.  I was even hospitalized at the beginning of the year.  And I was involved in some conflicts that I was getting into throughout the year because of my anger and being on that emotional rollercoaster.

But I learned a few lessons in 2013 that will help me get through 2014.  I would like to share some of those things with you which you may already know or practice now.  

1. Let go of the anger.  I’m so tired of being angry about having PH.  I want a life that is not controlled by PH, a PH free life, but I know that doesn't exist for me at the moment, so I have to learn to live within the bounds of PH.  By giving up PH’s control over my life, I see that I have accomplished more this year than I thought would have been possible.  I've taught two classes each semester, spring 2013 and fall 2013 despite being hospitalized in January 2013 just before my first time teaching two classes a semester. I spent lots quality time with my family; I went to Boston for PHA on the Road; I spent time with friends near; and talked to friends afar.  I think I have spent enough time being angry about PH.
2. Be content in every situation.  I was reading a devotional one day, and it talked about being content in every state. It's a hard lesson to learn, but I'm learning it. Whether I'm spending time with my family or lying in a hospital bed, I will be content.  No matter what the circumstance is, I have to learn to be content.  No more wanting something different, no more anger, and no more hopelessness.
3. Know you’re never alone.  As a patient or even as a caregiver, family or friend of a PH patient, we take on a lot of the burden all by ourselves.  Situations become more difficult for anyone to handle all by yourself.  There was a moment when I was so low that I didn't know what to do, so I prayed and then called a friend.  She talked to me, and then after work she came to my house and stayed with me for a while.  We had dinner out and talked about what I was going through. Through my faith, my family, and friends, I knew I wasn't alone and that I was loved by a lot of people.
4. Have ME time.  I realized that I need on a daily basis at least 15 minutes to just be with myself.  I take that time to get away from others, my cell phone, Facebook, and television.  I take that time to either write in my journal or read a devotional. Make time to be with yourself.  This can be a time for meditation, a hot bath, or whatever you need to do for yourself to relax, renew yourself, and refresh from the day.
5. Be hopeful.  Stop faking being hopeful; just be it. Throughout the year, I was trying so hard to be hopeful, but I couldn't feel it inside.  I was so hopeless about my situation of having PH, not being able to have a child of my own, and feeling lonely.  But as I said before, I'm never really alone. I'm seeing that my family is growing, I have so much love in my life from others who care so deeply about me.  I let the hope of a cure, finding love, and so much more fill me up, so that I can make it through each and every day.  

These may help you get through 2014 when you come across those speed bumps on the road.  I have been able to get through those challenges, troubles, storms, obstacles along my journey to make it through 2013, and I am going to try to make it through 2014 despite PH.  Have a wonderful New Year!!!

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.

Please Understand...

By Suzanne Kenner

 

Having Pulmonary Hypertension means that many things change. Just because you can't see the changes, it doesn't mean they aren't real.

Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...

...These are the things that I would like you to understand about me before you judge me...

I am scared. I don't know what the future holds for me. Will I end up dead or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. PH has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry, please understand it's PH I am angry with, not you.

Please understand that having PH doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit, I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. PH has affected my lungs and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go out with everyone else, but it hurts when you exclude me. Maybe I can't do what everyone else can.

Please don't tell me you know how I feel. You don't! Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain. Even on a good day, I feel like you do after you have run a mile. Please keep that in mind.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been sick for years.  PH is a rare disease.  Even if I was only diagnosed recently, I can't be miserable all the time.  In fact I work hard at not being miserable. So if you're talking to me, and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. There currently is NO cure for PH.

Breathing Fire: PH and Anger

By Kiara Tatum

Have you ever gotten so angry that you wanted to hit something or throw something?  Have you ever been so mad that you gave a tongue-lashing to someone?  Have you ever been so angry that your body felt so hot?  I’m sure I’m not the only one who’s been there, but we have every right to feel angry.  We have a chronic, incurable, life-threatening illness that has drastically changed our lives.  

I get mad at people who just don’t get it; I’ve been mad at someone for staring at me while I’m walking with my oxygen tank.  I’ve been angry at my mom when she asks me if I’m okay; I’ve been mad when I see another medical bill I can’t pay.  I get mad when I can’t walk at the pace of other people; I get angry when I have to cancel plans with friends.  I get mad when I can’t focus.  I get mad when I don’t have any more spoons left; I get angry when I have to spend a day in bed.  I get mad when I can't go to the club with friends.  There are probably more than a 1,000 things that cause me to get angry about my PH and how it affects my life.  

But behind that anger is sadness and depression, and I’m most angry with having PH and my body.  The pressures and frustration of having a chronic illness build up inside.  It’s so hard to have an illness where I can’t take an antibiotic to get rid of it in 10 days.  I wake up and I’m still in the same body that I fell asleep in the night before.  I’m still sick.  I get frustrated when I know that I used to be able to do something and I no longer can do it since my PH symptoms started.  I have PH.  It hurts my soul, and I cry out sometimes.  But it’s okay to feel anger, sadness, and hurt.  

But just because we have PH, doesn’t give us a free pass to explode on family, friends, or complete strangers.  My sister once told me that it was hard to live with me because she didn’t know how I was going to be from moment to moment.  It’s hard to deal with the anger, so use some of the outlets available to us to deal with it such as posting on the Generation Hope Google email group or Generation Hope: Young Adults with Pulmonary Hypertension Facebook page or share at a local support group meeting.  We can also talk to a friend, family, or professional; write in a journal; pray; listen to music; or punch a punching bag.  Continue to have hope and be positive.  Also, remember that we are not alone with this illness and anger.  A cure is burning up!!!