Need A Pick-Me-Up

By Kiara Tatum

I don’t know about you, but I have been having an extra hard time these last few weeks.  And all of sudden last week it hit me that it was my good friend’s birthday.  She died from PH last year in October.  She was my first friend that I had gotten to know, and we became good friends and had more in common than just PH.  We talked about everything and even cried together.  It just been sad to not be able to do that with her anymore.  I have been in a fog for almost an entire year and not really coping well with her death because I tried to cover it up.  So I think I just needed to let the hurt, the anger and sadness out.  I needed a pick-me-up.

But I think as we are ending another year with holidays and celebrations, we are all going to be cycling with feelings of sadness and anger which we are going to need some fast acting pick me ups to get us through these months ahead.  I have been finding that journaling is my go to pick me up, but sometimes even journaling is hard for me to be honest with my words.  So I've been allowing music to do my feeling for me.  Let music—Pop, Country, R&B, Rap, Jazz, Classical, Rock, and any genre—be your voice and just let go!

Music heals the soul.  One of my favorite songs on my playlist that always helps me fight another day against PH and have hope is Roar by Katy Perry.  It came in handy when I was just feeling down about the unknown.

I got the eye of the tiger, the fire

Dancing through the fire

'Cause I am a champion

And you're gonna hear me roar

Louder, louder than a lion

'Cause I am champion

And you're gonna hear me roar

You have to fight this illness with faith, hope, and music.  Because this illness has a way of bringing you to places you don't want to go to, it can be difficult to find your way back. So let the music play on!

Depression and PH

Depression is a battle many people with Pulmonary Hypertension and other chronic illnesses have to face from time to time.  Living with chronic medical conditions puts strain on a person not only physically, but emotionally, spiritually, socially, financially, and cognitively. This can be very overwhelming if not addressed.

Find the Source

First, we must step back and as clearly as possible examine what could be causing our depression.  What is the root of our emotional pain?  Medications and their side effects can cause depression.  There are some medicines that cause pain that could be making the depression set in or the medication itself causing emotional imbalances.  I like to not only read the side effects of new medications from the pharmacy, but also look up the medicine online.  My favorite website is www.webmd.com , but keep in mind everything you read online (even a reputable source) may have misleading/scary information.  Also, discuss what you are feeling to your doctor.  He/She may know the source and can help you better cope with the cause of your depression, whether it is medication side effects, pain management or another source.

Reach Out and Talk It Out

When I was depressed I wanted to just stay in bed with my head covered and block the whole world out.  Some days I cry very easily.  At first it was hard to open up about how I was feeling, but after I started to talk about it I started feeling better.  There are different ways and people you can reach out and talk to about your feelings:  close family and friends, PH support groups and mentors, and counselors.  I have my husband to talk to, but my mom lives far from me so I call and email her.  I have also attended support groups and counseling.  Often, I communicate with my mentors about certain issues that may arise or just to talk to a friend.  That constant communication helps me cope and provide clarity about what is stirring on inside my mind.  A couple links to PH mentors are http://www.phassociation.org/Mentors and http://peernetwork.net/.

In Addition…

There are other ways to help with depression or even preventing from getting depressed although it does sneak up on you sometimes:

• Get involved with volunteering, clubs/organizations (like a book club), or use your special talents to help others
• Meditate on positive messages, such as Bible verses, quotes, or proverbs
• Journal-- writing it out is another way I found of releasing my feelings
• Relieve stress by making lists, delegating responsibilities, using planners and alarms
• Talk to your doctor about medication for depression
• Get out, not just seeing the doctor, getting your labs done, or going to work, but to have fun!

Living with PH and other chronic illnesses can be overpowering at times.  I don’t want it to rule my life and I don’t want it to rule yours.  If you have any other ways you cope with depression please share so we may help and uplift each other.

May peace be with you,

Shawna

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!!!

Put Your Headphones On

Getting Through Those Down Days

Living with pulmonary hypertension is like being on the Kingda Ka roller coaster at Six Flags as you're propelled by a hydraulic launch mechanism to 128 miles/hour in two seconds. When you first receive diagnosis, it's an immediate life adjustment. Being unable to do certain activities like swimming, hiking, working out in the gym or walking the mall, that other young people our age take for granted can cause stress, frustration, sadness, anger and other feelings. We have great "sun shining" days, and there are those "stormy, cloudy" days. Here are some pick-me-ups for getting through those down days:

1. Put your headphones on. Listening to inspirational lyrics can get you through the not so good times. One of my favorite songs on my playlist is "Skyscraper" by Demi Lovato. I put this song on repeat until I feel the words in this song:

You can take everything I have

You can break everything I am

Like I'm made of galss

Like I'm made of paper

Go on and try to tear me down

I will be rising from the ground

Like a skyscraper

Like a skyscraper

It's a great to have a preset playlist ready to go during your down days, so that you can just go to it and start to play it as soon as you feel a storm brewing. I usually will sing out the song loudly and dance around my room. It's such a great release for me.

2. Get creative. Start a journal and don't worry about punctuation, grammar, spelling, and neatness. Just write it down! You can even draw, paste pictures or words, or doodle. If you don't know what to write; you can write a letter to someone, or ask yourself questions: what was a low point for me today, what makes me sad, what makes me happy, or if my life could be any way I wanted, what would it look like? It's your journal entry to express how you feel, so do it any way you want.

3. Get focused. Guided imagery is relaxing and healing that uses your imagination to direct your focus. Find a quiet place to sit with no distractions around. You can sit with your legs criss-crossed on the floor or sit in a comfortable chair. Put your hands palm side up on your legs and close your eyes. Take a deep breath in for a count of five, hold for a count of five, and release for a count of five. Repeat a few times. Start relaxing each part of your body from your head down to your toes by focusing on that body part and relaxing it. Now image you're on a beach; you feel the sun shining on you and can hear the waves crashing into the rocks. You can feel the sand between your bare feet as you're walking down the beach. You are safe and at peace. You are relaxed and when you feel like you can open your eyes again; then do it. This a great way to refresh and re-energize yourself.

4. Get it out. If you need to cry, scream out loud or into a pillow, punch a punching bag or a pillow, or a combination of these things; then do it. But limit the amount of time you stay in that place. I give myself no more than 10 minutes to cry and scream, and then I'm done. I can't stay in that dark place, and neither can you. So just get it out, and move on to some of the other ideas for getting through the down days.

5. Call a phriend. No one can truly understand what you're experiencing, so sometimes it's helpful to call a PH-friend that can listen and identify with how you're feeling. That phriend has been there before and can help you through a tough time.

I know it gets difficult to always be hopeful, positive, happy and smiley, so don't be so hard on yourself when a bad comes your way. Check in with yourself on a regular basis by asking how am I really doing today. And when you feel a little down, do one of the pick-me-ups. Feel free to share some your own ideas here with other GHers.

Well, If Laughter Is the Best Medicine...

PH sucks, and we all know this. But if we have to have it, we may as well find the humor in it. Maybe my slightly twisted sense of humor got an extra boost through all this, or maybe it’s because I delight in the ironic, but I usually find something funny at my hospital visits. Here are a few stories…

The very first time I found PH to be hugely ironic was during the diagnostic process. Right after a definitive diagnosis, they subject you to a whole bunch more tests to try to determine why you drew the short PH straw in the first place. One of the tests is the VQ lung scan, where they look for little clots that might be causing the issues.

What everyone failed to tell me until minutes before the test was that the dye they inject into you in order to view these itty-bitty places in your lungs is radioactive. Which means YOU are radioactive for several hours after the test. Which means you just might get pulled over for suspected terrorist activity if you are driving home and the cops happen to have their radiation scanners running.

Really? You’re going to inject me with dye, shove me into a tube (being “driven” by a tech in training I might add) and then let me go home while running the risk of getting pulled over for being radioactive?? What else you got?!? (Side note: I was not pulled over, but I kind of wish I had been. It would have been fun to explain.)

Then there was the time I went in for a cardiac MRI and my appointment was bumped for the convict already in the tube, because earlier he was running late getting there from jail. Uh-huh, he can go first, I’ll wait.

Both cardiac MRI’s have had music pumping into the machine to distract me from the tube inches from my face, that I can not escape. Both times some song has come on about not getting enough air or watching every breath you take. Okay, that second song is just creepy and stalker-ish anyway, and 10 points to anyone who names that tune.

Then there are the medical professionals I come into contact with. There was the tech in my second right heart catheter that bore a remarkable resemblance to Harry Connick Jr. That wouldn’t have been so bad if I hadn’t been strapped to the table and stripped of my dignity due to the, er, preliminary procedures for a RHC through the groin.

I have started to threaten to collect a fee from every hospital personnel who strolls by my gurney while I wait in the hall for my turn in the cath lab, stops, back tracks, and exclaims, “OH, you’re too young to be here!” Seriously, I’m going to start charging, and then I will single-handedly pay for you all to attend Conference in June of 2012 because I will have collected that much money.

I delight in schooling marginally informed professionals about PH, particularly when they dare say, “Oh, PH, sure I know all about that. So, they treat you with oxygen, right? And then, what, give you steroids or something?”

There are many benefits to being well informed about your disease. But rattling off a bunch of information to a respiratory therapist who shot you a dirty look when you tried to explain what PH is, and then stated the above quote, is priceless.

Please don’t get me wrong, this isn’t about bashing those whose care I have entrusted myself with. Because I am incredibly blessed to be in the hands of people whom I consider to be the best of the best in medical care, and certainly the best for me. I’ve said this many times, but I’ll say it again, the doctors that care for us in the PH population are hands down the most brilliant and compassionate people I know, and I am grateful for them every day.

What all of this is actually about is finding the lighter moments in the times when I really want to cry. See, in the face of something as sobering as PH, you have to find the humor. It’s a defense mechanism for me, pure and simple. I also figure if I have to be put in all these compromising situations, when I’d rather be doing just about anything else, I have the right to get just a little sassy, at least in my own mind, and maybe out loud if really necessary.

C-O-U-R-A-G-E

I feel like I have been to the Wizard of Oz to receive my badge of courage. While a lot of people have trouble looking at the bright side or weathering the storms, somehow I got lucky and just seem to be strong when I need to be. Don't get me wrong, I have my moments just like anyone else with a chronic illness. I sometimes just have to be angry or cry my eyes out, then I just pick back up and go on. I was thinking the other day that the word courage can remind us of a lot of things.

C is for caring and concern. This to me can be for yourself and others. I have to be concerned about my own health and how I take care of myself to care for my family. Also, with PH and lots of other illnesses, your family, friends, doctors, etc. care for you.

O is for optimism. Without a positive outlook on life, people are never as happy as they could be. I am not saying that this is always easy. I tend to lose sight of the positive on my third or fourth trip to the bathroom thanks to the side effects of meds. I try then to find the humor in the situation, as in, "Wow, I am getting to read a lot of this book!!"

U is for the unexpected. Try to be ready for it, and thank God when he pulls you through.

R stands for ready. Be ready for the fight of your life. People with PH are sometimes sick for a long time before they are even diagnosed. Then after dealing with all the tests, they have to endure the stress of side effects of medications. All the people I have met thus far in the PH community are so up for the fight, it's amazing.

A is for answers. We all want answers in life, yet with PH there are no concrete answers as to why people get this disease, especially for the people with idiopathic PH. I was told I have this because my lupus caused it. Yet, no one can tell me why I have lupus. Also, there is no cure yet, so we have to be courageous until that day comes.

G is for -- lets be honest -- gross. The side effects we PHers have to tolerate are just that, gross! I despise a headache, and the GI symptoms (I won't even go into details about that!). I am sure that others have their own stories to tell!

E is for education and expectations. I think about all the support groups and people out there trying to spread the word about PH to patients, family members, medical professionals and the public. I think about why we're all so focused on education...because we all expect that one day it will come full circle in the form of a cure.

I find that this combination of thoughts just leads me to be hopeful; that one day no one else will have to go through all this. I worked in the medical profession and have seen so many wonderful things, that it is impossible for me to believe that this can't be over come as well. Tell me what courage means to you!!!

God Bless, JennRN

Living Breathless

So last May I was going along with life. Working part time as a registered nurse and taking care of my family. This family consists of my three year old daughter, two at the time, and my wonderful husband. Life then was breathless, because God had given me so much. I had overcome my Lupus symptoms enough to be able to be a momma, what I always dreamed. Then I realized I couldn't breathe when I did certain simple activities, like walking into work. So off to the doctor I went. The following week was a whirlwind and left me just as breathless as life itself. I was diagnosed with pulmonary hypertension on Friday of that week. Life as I had known it would never be the same.

Even with all the changes that my family and I have had to make, I can still honestly say that I have a wonderful life. I have life. I have the breath I need to keep living and to watch my baby girl grow up. I may not be here for as long as I would like, but I get to live my dream of being a momma. I can no longer work as an RN in the same unit that I was working in. I never thought that I was meant to be a stay at home mom, but I am learning with everything else that this is a blessing in itself.

Being breathless has allowed me to really see things for their beauty. I love to plant flowers, sometimes it’s really hard for me, but to see them bloom in the sunshine and to be able to enjoy this is one thing that I have learned not to take for granted. I can't rake leaves, or mow grass, but I can feed the birds and watch the squirrels. I am trying to teach my daughter to enjoy the small things like this. It is so much fun to watch her giggle at the squirrels when they chase one another in the yard.

I am thankful that I have been diagnosed in the generation where science and medicine have come so far. Twenty years ago I may not have had a very good prognosis. With all the research and medications available I will be able to live longer, even breathless.

With God's Love JennRn

On Acceptance (One Breath at a Time)

Today I was so out of breath walking to the library on my college campus in the wind and cold that once I got inside the doors, I just collapsed in the entryway and sat there on the floor panting for awhile. I watched people come and go through the doors, some giving me looks, others just passing through. I used to be embarrassed about things like this… sitting down in the middle of a store because my legs hurt from walking, or running into class late, panting so loudly I’m sure the whole room could hear.

I’m not embarrassed anymore, maybe because I’ve toughened up to the weird looks and snarky comments. Still, sometimes it gets to me a little. I’ve had people tell me my central line is gross. I’ve had guys break off relationships with me because they found out I couldn’t have kids. I’ve had friends turn away at the beginning of a friendship once they find out I could die because they don’t want to get attached. It’s like, “Hey man, I get it…” but at the same time, I can’t help feeling hurt. I didn’t ask for this disease. I didn’t ask not to be able to have kids, or to have an IV in my chest, and I sure as hell don’t want my life to be cut short because of something completely out of my control.

But this is our reality. Those who want to judge us and put us down for having pulmonary hypertension aren’t people we want in our lives anyway. I hope all of you are able to find people who love you and care about you despite your disease. I know I have an amazing group of friends and family that are supportive, loving, and understanding. I don’t know what I’d do without them really. My boyfriend once told me that having PH is kind of like a “good people detector.” The ones who are genuine and caring will stick around, while the shallow jerks will just walk away.

Don’t ever apologize for your position. When people tell you that you’re gross or weird, just ignore them, or have some kind of witty comeback to whip at them. I refuse to let their words bother me anymore. When it’s hard you can always turn to your friends and family for support. Don’t feel badly about stopping for breath…-even if it means sitting down in the middle of the grocery store. Don’t feel badly if your pump alarms in the middle of a lecture or performance. Don’t let uninformed people get you down, and if they are being really rude, maybe the best comeback is to explain to them what pulmonary hypertension is in a really nice way… they’ll probably regret how rude they were. Maybe next time when they approach someone they won’t be as offensive, and then there’s one more person educated about this disease! Accepting PH in my life has been challenging. For most of my journey with PH, I’ve tried to deny that I have it, and always felt embarrassed and scared trying to explain it to anyone. By trusting myself I was able to get to the point where I have everything I need to take care of myself: family and friends who support me, medical professionals I trust, and an inner strength that keeps me afloat when strangers are looking at me funny. Once you accept yourself and the new you with PH, it is strengthening and makes daily events less stressful. Stay strong everyone, and don’t apologize for what you need to do to get through the day!

We are hope.

What does it mean to have pulmonary hypertension? I’m sure we all remember what it felt like when we were given our diagnosis. After weeks, or sometimes months of tests and doctors, as we sit in a small enclosed hospital room, we are finally told what is causing our shortness of breath, chest pain and fatigue. “You have pulmonary hypertension.” Well what the hell is that?!? I had never heard of this disease before, I had no idea what it was, or how much my life would change after that moment. Every day we are faced with challenges now, stairs seem to loom in front of us, we have to ask our friends to wait up at the mall, and maybe we are saying no to going out because we just don’t feel up to it. Floods of meds and new ways of life pour down over us, and we become nurses and experts in PH ourselves. We have to, and we all do so with the bravest faces.

So what does it REALLY mean to have pulmonary hypertension? Well, “Pulmonary hypertension is high blood pressure in the arteries of the lungs that can lead to heart failure.” Jeeze, how scary does that sound? And there are websites out there with wrong or out-dated information that are WAY scarier than that! But that still doesn’t explain what it means to have pulmonary hypertension. Having PH makes you a warrior, a rock amongst the waves. You are a strong individual, who despite being dealt a bad hand, has come through it and still finds a way to smile everyday for just being here. People will put you down, people will leave, and others will tell you there’s something wrong with you, that you are inadequate in some way. NO you aren’t. You are more than adequate. You are over-adequate. We put up with incredible struggles daily just doing regular things. I have some people approach me asking what my Flolan pump is, or what that plastic looking stuff is on my chest. I always explain it to them, as patiently as possible, (but it’s become a pretty monotone, emotionless statement). “I have pulmonary hypertension; it’s a rare incurable disease. I have extra tissue in my pulmonary arteries so my heart has to work super hard to pump out blood. I’ve got a permanent IV in my chest that delivers meds to me 24/7 and without it I might not be alive today.” Most people respond with “Wow, I don’t know how you go through all that… I could never do that.” I just smile and say thank you, I’m making it through. We are strong. We are much stronger than those who put us down, and we are plenty strong to kick this disease.

Hope is so important along with our strength. I know there was a time when I didn’t have hope, and it’s not a good place to be. Why act like you are dead when you aren’t, you know? We are amazing people, amazing young adults. Don’t forget that. We’re dealing with this illness in the prime of our lives. Some of us are just starting families, or just settling into careers, or starting school, excited for our future. We have all these dreams and ambitions, and then BAM, we have pulmonary hypertension. And that threatens to drain us of our dreams and goals…but we can’t let it, and we don’t. We keep on fighting, because we have hope, and we are strong! And look at us! Many of us have surpassed our “life expectancy” rates by quite a bit! This is incredible, and it only makes every moment of life better, every bit of food taste fuller, and every sunset more beautiful. So yeah, I know how much having PH sucks, just plain out SUCKS. But we should remember every day that there is hope, that we ARE the hope, and the strength, and that as PH warriors, we will get through this.