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.

Florida Trip!

On the 20th of June, I along with my family will be boarding a plane and headed for Florida! Because I was born with a lung disease called Pulmonary Hypertension - we are going to an annual conference that takes place every 2 years and this year it is in Florida! I went to the last conference and I loved it! I got to meet people who had the same thing as me, talk about our experiences and make great friends. (Or in the PH community they are called PHriends.) This  conference to me is a lot like heart camp. We are all dealing with the same thing. We are all understanding and accepting of one another. We may not see each other very often, but when we meet up at the next conference it is like nothing has changed and we are still great friends.  

Along with sitting in on some interesting topics (such as how to live with a low salt diet, which I need to start doing again) I myself will be part of a panel that talks about creativity as a form of coping; specifically writing/blogging. I will also be attending a support group meeting for teens with PH and then later that night I will be going to an after party for PH patients who are between the ages of 20 - 30 to meet, have and just talk. Get to be normal, regular, young adults. And to add to the excitement, my family and I will be visiting Disney World! 

I know it will be hot and sweaty in Florida - but I am so excited! I can't wait for it! I'll make sure to take lots of pictures and share this amazing, uplifting and inspiration event with you all when I get back!

Hope and Love,

Becca 

Sorry it's been a while

 Hi!


 Sorry I haven't written in a while. I came down with what we think was the flu. I had a fever for about five days straight and just felt awful. And on top of that I had to go in for some of my finals. Thankfully I am now feeling much better and I have finished my first year of college! It's amazing to me how fast this year has gone by! It's amazing to me how just a few years ago the idea or even the thought of me going to college wasn't something the doctors or my family thought would be able to happen. Yes we hoped and fought for it, but it wasn't always a definite yes I'd love to go to college and here I am, my first year of college done!


On top of that I also have some great news about this summer! I have written a few articles for Pulmonary Hypertension Association. It is an organization for people who have Pulmonary Hypertension; like myself. Every other year they also have an International Conference and this year it is going to be in Florida! We had planned on going so I could see some of my friends and catch up with them. About two weeks ago though they contacted me and asked me to be on a panel and talk to patients, caregivers and family members about how creativity has helped me cope - especially my writing and Sign Language. I am so excited to be able to do this! On top of getting to see all my friends, I will be able to help families and patients learn great coping strategies. It's all amazing and I am so excited!!


Other than that, not much else is going on. Tonight I will be going to my church's talent show and performing American Sign Language; so that will be exciting! I promise to update more often now that I am not sick!


Hope and Love,
Becca