Spreading Awareness, All the Way to Germany!

Hey guys,

I am honored and so excited to tell you guys that a blog for people with Congenital Heart Defects has in Germany asked to use one of my past articles for their own blog. After corresponding for a few days back and forth, the article was published on its site just a few days ago. I posted a link to their website on my 'Favorite Links' section of my blog, so feel free to check it out! 

This is also exciting for me because I got to meet yet another person who has a congenital heart defect and the same lung disease I have, Pulmonary Hypertension. If that wasn't cool enough, she also has a pacemaker like me! I have met a lot of people who have pacemakers, sure. But none of them have had PH like I do! I thought I was the only PH patient who had one! 

It is amazing how the world can be so big but the internet can make it so small and you can meet and connect with people from all different countries that you otherwise wouldn't have even known existed! The written word can bring hope to the world and change. And know, its also brought me a new friend; all the way from Germany! Just another reason why I love to write and will continue to do so. 

Hope and Love,

Becca 

P.S. If you want to read my article on their website you can go here: Corience.

30 Things to Know about my Invisible Illness

My mom sent me a link to a website where they asked people to fill out this questionnaire about their invisible/chronic illness for invisible disability awareness month. Here is mine. 

1. The illness I live with is: Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Hypertension

2. I was diagnosed with it in the year: 1992

3. But I had symptoms since: 1992

4. The biggest adjustment I’ve had to make is: My low salt diet, no caffeine and no roller coasters

5. Most people assume: Just because I look healthy, that means I am.

6. The hardest part about mornings are: Having enough energy to actually get out of bed.

7. My favorite medical TV show is: ER, before it went off the air.

8. A gadget I couldn’t live without is: My pacemaker/defibrillator and oxygen tank

9. The hardest part about nights are: I lay awake, worried about my future

10. Each day I take __ pills & vitamins. 45

11. Regarding alternative treatments I: In my case, they don't work and are impractical.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. While having a visible illness may make people be more understanding since they can see it, I would rather them assume I'm like any one else and treat me as a normal person.

13. Regarding working and career: I worry about if anyone will hire me because of how much insurance will cost. I wanted to be a nurse for as long as I was little, but I know now that it is too physically demanding for me.

14. People would be surprised to know: I need a heart and lung transplant and I am not allowed to have biological kids.

15. The hardest thing to accept about my new reality has been: It's not a new reality for me since I've been living with this my whole life. But I've never gotten over the fear of dying. 

16. Something I never thought I could do with my illness that I did was: Graduate high school

17. The commercials about my illness: This question makes no sense 

18. Something I really miss doing since I was diagnosed is: I have never been able to breath like a normal person. I'd love to know how that feels.

19. It was really hard to have to give up: Roller coasters and salt. 

20. A new hobby I have taken up since my diagnosis is: Sign Language 

21. If I could have one day of feeling normal again I would: Go on a roller coaster, eat KFC, have Mountain Dew and go skydiving. 

22. My illness has taught me: Never give up and miracles do happen. 

23. Want to know a secret? One thing people say that gets under my skin is: "You look healthy." 

24. But I love it when people: Take the time to really understand what I'm going through. 

25. My favorite motto, scripture, quote that gets me through tough times is: "Be kinder than necessary, for everyone you meet is facing some type of battle." 

26. When someone is diagnosed I’d like to tell them: Just hang on, it does get better and it doesn't mean your life is over. 

27. Something that has surprised me about living with an illness is: I am not alone. I used to think I was, but I know now that I'm not. 

 

28. The nicest thing someone did for me when I wasn’t feeling well was: Just listen to me complain and be there for me, supporting me. 

29. I’m involved with Invisible Illness Week because: I know first hand what it feels like for people to think you're faking it or think you are healthy just because of how you look. I want people to become more aware that you really can't judge a book by its cover. 

30. The fact that you read this list makes me feel: Like there is hope that people will start to be more understanding and aware.

Blog Entry for ACHA

Hi everyone, 

I write blog entries for Adult Congenital Heart Association and I wanted to share with you what I wrote for this month's entry. Here it is: 

As all of you know, having a congenital heart defect means you have a scar—or a few of them. For the majority of my life, I haven’t felt too self-conscious about my scar. I like to thank the heart camp I’ve gone to since the age of eight for helping in that field. However, I won’t lie—when I started high school and my scar from my surgery in 6th grade was still bright pink and bumpy, I was self-conscious about it. I even went as far as to get special make up to cover it up.

I just didn’t feel like me. I felt like I was lying, or covering up my defect. Granted, my heart condition isn’t all of who I am, but it is part of who I am. If I take away that small part of me, I am no longer me. So with that in mind, I started to feel more comfortable with my scar. I wear v-neck shirts and scoop necks. I have no problem with my scar or my body.

But last weekend I was suddenly pulled back to my state of mind when I was a freshman in high school and feeling self-conscious about my body. I was invited to a BBQ for the organization that I give speeches for about my experiences with bullying. I was excited to meet the other speakers and learn who I would be working with. But then I started to freak myself out.

I started to worry that all the girls there would be in these tiny bikinis and have perfect skin. I worried and freaked myself out that these people would look perfect while I sat there with a huge, ugly scar on my chest. And I didn’t know any of them either, how was I supposed to make friends with people who looked perfect when I looked… like me?

Thankfully, I was pleasantly surprised. I forgot that there are people from all walks of life who also give speeches for this organization. Some talk about their past with eating disorders because they hated their bodies at one point too. There was another girl who had gotten bullied so badly she dropped out of high school and got her GED instead. There was another girl who wore the scars she got from suicide attempts on her arm.

I had convinced myself that I would be the only one who had insecurities about her body and herself. But I couldn’t have been further from wrong. The BBQ went great, and I really like the people that I work with. I know that they, of all people, will be understanding, kind and caring about how I feel and what I’ve gone through.

When I got home, my mom asked me if anyone had asked about my scar and why I had it. I smiled and shook my head and told her, “Mom, there were two girls who had cuts all over their arms. They don’t care about the scars. Maybe they didn’t even notice mine.” I told her with a grin. I have never felt more in my element than with this group of people besides when I had gone to heart camp. Like camp, these people and I had a connection and we understood one another.

But for those of you who, like me at times, have self-conscious thoughts about your scars—don’t. Your scar does not define you as a person. Yes, it is part of your life, but it is not your whole life. So don’t let it stop you from living the rest of your life. My scar doesn’t hold me back from wearing bathing suits and going swimming. I don’t let my scar hold me back from wearing a lower-cut shirt.

If you want people to forget you have a scar, then you start forgetting it first. I act like a normal, healthy, outgoing teen. That’s what people see me as because I don’t let my scar or my defect represent me. I represent me. Start letting your personality represent you and not your scar. 

Hope and Love,

Becca 

Knott's Berry Farm

Hi everyone,

So last week I went to Knott's Berry Farm for the first time! I performed there with my Sign Language group. And for those of you who don't know just what I mean by signing to music , here is a brief explanation. We put a CD into the player and while the music (lyrics and all!) is playing from the speakers, we interpret what is being sung into Sign Language. 


I had never been to Knott's Berry Farm before but I had looked up on the internet to see what rides they had. Sadly, I am limited to only a few rides. Usually the kiddie ones. Haha. This is because of my heart condition and the pacemaker/defibulator I have. Some of the seat belts for the rides, the ones that go over the shoulders could move the pacemaker/defibulator that is inside of me. And the G-Force from the roller coaster could possibly kill me. So it's best that I stick to carousels and water rides. Which I don't mind, thankfully. But I must say, I do miss being able to go on roller coasters. I am an adrenaline junky; so it is a bit sad and hard for me to watch all these people come off of roller coasters with these big smiles on their faces and know that I can't do that. I think one of the things I look forward to the most with a transplant is that I will be able to go on my beloved roller coasters again. While I miss Mountain Dew because I can't have caffeine and I wish I wasn't on a low salt diet - I miss roller coasters the most. 


However, I did have fun even if I couldn't go on the roller coasters. I went on the rides that I could go on and I enjoyed every minute of it. It was a great way to start the summer. I got to do one of my favorite hobbies, go on a bunch of rides and I hung out with a group of amazing people. I think it's important to remember that just because you can't do a few things - doesn't mean you can't have fun. 


Hope and Love,
Becca 

Here is a video of me doing American Sign Language to music to help you see just what exactly I do. 

Good and Bad News

Hi Everyone,

So I have some good news and some bad news. I'll start with the bad news that way we can end on a happy note. =D 

Lately I have not been feeling very well. I am tired, coughing constantly, short of breath and just all around - not feeling at my best. We have gone to the doctor twice now and each time they said that my lungs sounded fine. We took an X-Ray and they said that looked good too. So I got an ECHO yesterday, just to make sure that the function of my heart is doing okay. The doctor who looked at it said nothing stood out as worrisome so that is nice, but it still doesn't give us any answers. I am on some steroids to help, but so far I still don't feel very good. I have missed several days of math class - so I have withdrawn from that class. However, I am still in my biology class, English and Psychology and I am doing well in all of those classes. 

Now for the good news. A few months ago, I heard on the radio an advertisement for a non-profit organization asking for speakers to talk to kids about their experiences with bullying. I heard back from the woman today and I had a phone interview just a few minutes ago. I talked to her about growing up with my congenital heart defect, being bullied and even just the snide remarks strangers make because they don't understand why someone who looks so healthy can't even walk up a flight of stairs. Nothing is for sure yet, but the woman I spoke to said she loved my story and that she would leave a note for her supervisor to contact me within the next two months or so. She said that at that time they may not have an opening for me to fill but they would make sure to keep me on file for when they needed another speaker. She also told me that if I were to get the position, I would have to go to training twice a week for about four to six weeks then after that I would give a speech once or twice a month; I would get paid for this including the time spent in training. I am so excited and I can't wait to hear back from the woman!!!

Hope and Love, 

Becca   

Hope in the Hospital

Hi Everyone,

I went to visit two heart kids the other day at the hospital. My mom and I make an effort to go and visit the kids and their families whenever we can because we know how much it meant to us when people would come to comfort us when we were in the hospital. Both were little girls. I had met the other one before and last time I saw her she was full of energy; pulling at my necklace and jumping up and down in my lap. The day I went to visit her though she was extremely tired and she had been sleeping most of the day. It was just another reminder that one day you can be full of energy and then the next feel like you had nothing left in you; especially for heart kids when they are already so tired as it is. She celebrated her birthday on Monday and her mom got teary eyed when she said she had been hoping she wouldn’t have to celebrate another one in the hospital. I gave the mom a smile and told her, “She is young and won’t remember this birthday anyways. But what’s even more important is that she got to celebrate a birthday period.”  

The other little girl I went to visit was a little ball of fire! If she didn’t have the IV in her hand at first glance you would never have known she was sick; until you took a closer look at her and saw her blue lips and fingertips. This little was running all over the place, not giving a care in the world that her IV was pulling at her. We sat down on her bed while my mom and her mom talked quietly and the little girl started to put stickers all over my face as we laughed and played with her SpongeBob doll. A nurse came in and took her temperature and then asked to check her oxygen with the small pulse-ox. She started to cry and say she didn’t want it. (The pulse-ox is just a small piece of tape with a light on it that is able to see the percentage of air you have in your lungs; it doesn’t hurt or anything.) As the little girl cried and said she didn’t want it, I couldn’t help but blame her. While she very well knew it wouldn’t hurt, she still didn’t want it. She didn’t want anything more on her body. She didn’t want anything more done to her. She just wanted to sit on the bed, eat her Doritos and play with her toys like any other normal little girl should be doing. But instead she is cooped up in a hospital room with an IV stuck in her arm and having people poke and prod at her at all of the day and night. I placed my hand on the little girl’s lap and asked her if she would put it on if I did. She said yes and told me she wanted me to wear it first, so I did. She clapped when the machine said my oxygen was at 94% and then she gladly helped the nurse wrap the equipment onto her tiny finger with a big smile on her face. This little girl’s oxygen was at 77% but she had just as much excitement and energy as any other little girl I have ever seen. Once the nurse left the little girl crawled into my lap and told me, “We both have funny hearts.” I held back tears and gave her a peck on the top of her head and said “Yes we do.” When it was time for my mom and I to leave the little girl turned to her mom and repeated with tears in her eyes how she wanted to go too. She kept begging her mom to let her go home. I know the feeling all too well. . . While I know that the hospital is the best place for me when I am sick, I never want to be in there. I never enjoy being in there as a patient. I remember in 6^th grade I would cry to my mom and I would beg her to take me home. I remember telling her “Mom, I’ll even eat that horrible meat you cook if you just get me out of here!” I realize now though that my mom and dad hated me being in there just as much as I did. But I got out of the hospital and I have been able to live these past four years of my life like any other regular teenage girl. Gone to prom, went on Spring Break with my best friends and graduated from high school. I have no doubt in my mind that the two little girls I visited the other day will do the same.

Love and Hope,

Becca

You Can't Even Imagine

Hi Everyone, 

I was going through some of my old poems that I have written throughout the years today. I found a poem that I wrote this year for my creative writing class. The assignment was to write a poem about something that other people in the class would have no knowledge of. The teacher told us to write about something that other people may not be able to imagine themselves doing or going through. The topic I chose, was being terminally ill. Here is the poem: 

You Can't Even Imagine 

You can’t even begin to imagine

What it feels like

To know you are dying

You can’t even begin to imagine

What it feels like

To look at your parents

Knowing you may never see them again

Or how it feels to look around a room bursting with loneliness

And know that this place

This frightening place

Maybe the last thing you see before you die

You can’t even imagine

The horrifying embarrassment of having to ask your mom to help you to the bathroom

At age thirteen your strength is too fragile for you to even undo your own hospital gown

It feels as if you are back at age two

With your mom guiding you onto the freezing porcelain toilet then back down

Your dignity is stolen away from you because of your own body 

You can’t even imagine

Looking at yourself in the bathroom mirror

And seeing yourself for what might be the last time

The last time you see yourself and all you can see is your sunken eyes of sickness

The paper white complexion of a malicious infection eating its way through your body

Slowly swimming through your fragile veins and into your blood stream

You can’t even imagine

The sadness that consumes not only your mind

But every inch of your trembling body

When you see for the first time in weeks

Just how sick you truly are

You can’t even begin to imagine

The terror

Of having your life placed into the hands of someone else

You can’t even begin to imagine

The fear that overwhelms you when the mask is placed over your face

The plastic smell of medicine consumes your lungs

And you plead “please don’t let me die.”

You know that you are no longer in control of your life

You can’t even imagine

What it feels like

To know you may never wake up

From not only surgery

But also from this all too real nightmare 

In the class that I took we did peer editing. A boy who read my poem wrote me this: "I think you over used 'You Can't Even Imagine.' When I told my mom this she told me that his comments only proved my point even further of not being able to imagine what it was like to be chronically and terminally ill. Before you make a judgment on someone else, please try to picture what it would be like to be them. Maybe if we all walked a mile in each other's shoes, this world would be a much more understanding place. 

Love,

Becca 

Camp Family

Hi everyone!

This weekend I had my camp party where several of the kids from camp came to my house to swim, eat, watch movies and just have fun. I go to a camp for kids with CHD. (Congenital Heart Defect) We went swimming (for about 5 minutes because it was too cold! Lol.), we had a water balloon fight, squirt gun fight, roasted hot dogs for dinner and made smores over a camp fire.
We all sat down near the end of the night and watched old camp pictures of us from years ago. We only get to see each other twice a year, so this party was a great and much needed get together for all of us heart kids. Before I went to camp, I felt alone and like I was the only one with a heart defect. But camp has shown me and so many other kids out there that you are not alone and that there are people out there who know and understand what you are going through.

All the girls spent the night on Saturday and we stayed up till 4 AM in the morning. We talked about boys, movies, fashion and even dancing. But for the better part of the night we talked about things that we couldn't talk about with any of our friends at school. We talked about our fears, about the times when we have been made fun of because of our scars, the times when teachers haven't understood of our health problems and all the people out there who just assume we are healthy because we look healthy. My friend told us a story about how a teacher tried to take her to the principal's office for using the elevator at school, she had tried to explain to the teacher that she had a heart defect; but he hadn't believed her. Another friend talked about girls in Gym class who would say how they wished they had a heart defect so they wouldn't have to run the mile. We all shook our heads in disbelief. "They wouldn't want our lives if they had to take 40 pills a day, get a pacemaker, need a transplant, miss a whole semester of school and be locked up in a hospital room for hours on end." I told them and we all agreed.

We talked about how we consider ourselves lucky. We are lucky because we were born in a time where medical technology was growing and becoming better and better each day, keeping us alive. We also agreed that we are lucky to have heart defects. Strange, I know. But we all feel that having CHD makes us more accepting, understanding, loving and appreciative of life. We all agreed that we wouldn't want to be normal teens because we fear that we may not be as understanding and accepting of others. We all know what it's like to be different and we wouldn't want to cause anyone the pain we have had in our lives just because people don’t understand. Two of the friends from camp were once normal teens before they found out they had a heart defect. One ended up getting a transplant and the other now has a pacemaker/defibulator. They both said that they appreciate life so much more now that they know how fast it can all vanish.

I have grown up with these kids. We have all been there for each other through the hard times, because we all know what it's like to go through what we go through. I know that if I ever need someone to talk to, or a shoulder to cry on; the kids from camp will be there for me. We are a family. We are all there for one another. We are all supportive. We all care for one another. We all love each other. This is my camp family and I love them so much.

Love,
Becca

Doctor Visit

Hi Everyone,

I got back from my California last night. Our plane was delayed so I didn't get home till around 10:30 PM. My doctor appointment was pretty un-eventful, which is a good thing. They took me off of one of my medicines and put me on another, since the previous one I was on could cause lung problems along with Thyroid problems; hopefully with that medicine out of my system my Thyroid will go back to normal. Other than that, there were no changes. My pressures were still 80 - 85 (a normal person's Pulmonary Pressures are 10-15!) At some point they may take me off of another medicine and replace it with another; but at this time, they are not doing that.

I got to meet a little girl from California who has the exact same thing as me. She is 8 years old and had her 4th open heart surgery about a week or so ago. She was adorable. =) I always love meeting little kids who have heart defects because seeing an older kid with their defect really helps give them and their families hope. If I was able to grow up, then their kid may be able to as well. And I know that kids with heart defects need as much hope and help they can get. When I was talking to her about camp, how we both had Pic Lines at some point in our life and how we both have scars; she just randomly came up a hugged me tightly around the legs. I leaned down and wrapped her up in my arms. Later on the nurse talked to my mom and told us that the girl was extremely shy, so it was amazing how she felt so safe and comfortable with hugging me after she just met me.
Its tough being chronically ill, but if I can give a kid some hope and realize that she will be able to lead a relatively normal life, then I don't mind having a chronic illness.

Love and Hope,
Becca