How Do You Educate Others While Still Enjoying Yourself?

I am an open book, about pretty much anything in my life; especially with my health. You wanna ask me a question about it? I'll gladly answer, as long as you ask it in a way that is not rude, disrespectful or inappropriate. But I've noticed that not everyone is that way. 

Yesterday when I walked into class, I took a seat beside my classmate and friend who is deaf. He and his interpreter were talking about this guy who kept asking questions about why he was deaf and about being deaf while at a party. My friend said that he eventually snapped at him and told him that he wasn't in the mood to answer questions because that's not why he came to a party. The interpreter and my friend asked me what I would've done in that situation. I simply replied with, "I would answer his questions." 

In which I got a response from my friend, "So if you were at a party, drinking and just having a good time, you'd be okay with people asking you questions about your scar?" 

I told him yeah and that it happens quite often honestly. I don't hide my scar, so and I am fully aware of the fact that I am going to get questions about it. Questions I am willing to answer. I did say though, that I answer the questions all similarly. I tell people when they ask, that I've had open heart surgery because I was born with a heart defect. My answer typical suffices their curiosity and they don't feel the need to ask more. However, some people do ask me about the defects that I have, what medications I'm on and other things. And at that point, if we are in a social setting and I don't want to answer, I'll nicely offer to meet up with them some other time to talk about it. That way if they truly want to learn about it and they aren't just being nosy or just don't know what else to talk about with me - it puts the responsibility on them to come to me at a later date. 

I pointed out that I believe it is my responsibility as a CHD patient and fighter that I help raise awareness. Now do I like that sometimes my scar is the only thing that people notice about me? No. But part of education and raising awareness about an illness or a disability, is showing the people who ask these questions, that your illness and disability does not define you and it is not the only aspect of your life. I also think it is important to remember that if you snap at someone or make snide remarks about their questions, you may turn them off from wanting to learn more about the disease or disability. And that will never help the cause. That will never help educate. It will never help find a cure. 

So while I understand that it gets old answering the same questions, it's part of our life. Whether we like it or not. We just have to make the best of it. I can say though, that the majority of people I have come across, once I answer their question and explain to them what a heart defect is, they are happy with the answer and then we continue on with the original activity or topic. Very rarely do I get people in social settings that continue on with questions - especially personal ones. But my advice that if that does happen to you - just nicely tell them that you'd love to answer their questions sometime later when you have more time and that if they want you can meet up sometime to answer them. It leaves the door open for you to educate them if they want to, you haven't been rude and possibly turned someone off to learning more and you've educated them already in the fact that there is more to you than just talking about your illness or disability. 

Hope and Love,

Becca 

Share Your Story!

Dear Readers, 

I am on the e-mail list for Photobucket which is an online free photo editing site where you can upload your pictures, edit them and share them with others. Its an amazing site and I have found some amazing photos that are beautiful on there. Although I myself am not a very good photographer and don't really have the patience to get any better - I thought some of you might like to share your story through photos on this site. 

Photobucket is holding a Stories Contest called 'Life is an Adventure' and the winner will get $25,000! There is no limit to how many stories you can enter - but each story should be different as should the pictures. I thought that through this contest we could help share our stories of survival, triumph and hope. Help spread awareness about CHD, PH or any other illness you feel strongly about.

If you want some more information, go here. Please note though - all photos must be your own!

If you aren't a good photgrapher (like myself!) feel free to comment below though and share your stories of adventure, survival and hope!

Hope and Love,
Becca

Clearing Up Some Misconceptions About Health Insurance

Hi, 

I was having a conversation with one of my followers about how people just don't seem to understand what it means to be chronically/terminally ill. People in my experiences are the most clueless when it comes to the healthcare topic and being able to keep a job while being chronically/terminally ill. 

I get a lot of: "Well just get a job." Or "Oh I'm sure you'll find health insurance." Which is completely false and an ignorant comment on their part. Here is what I posted and I wanted to share it with you all because I think those who are perfectly health don't really understand just how hard it is to get health insurance when you are chronically/terminally ill or have a pre-existing condition.  

" It amazes me too how very little people know about how being chronically and/or terminally ill can effect all aspects of your life. A lot of people see me smiling and laughing at school, and they figure I can do anything. But they don't see the side of me that takes 45 pills a day, sleep with oxygen at night and get out of breath when just walking up a flight of stairs. They don't get that some days are better than others when it comes to my illness and they don't realize just how expensive keeping me alive is.

They are used to going to the doctor once a year while I go every 3 months. They think getting sick means getting a cold and having a prescription for some allergy medication. They don't think about needing to get approval from a health insurance company or having to deal with being denied the medication because it is too expensive. They don't have to deal with trying to find health insurance when no one wants to insure you because you're too expensive. It's frustrating and sometimes, its disheartening. But I am committed to spreading awareness that way more people will realize, this isn't just some flu like thing that once I get better its gone. This is going to live with me my whole life.

 As of right now, I am on my state's medical insurance but once I turn 21, I will have to put on my dad's. My dad owns a small engineering firm and I worry that because of my health insurance costs, his insurance premiums will sky rocket and he will end up going bankrupt... all because of me. I hope that once I graduate from college with my Psychology degree I will be able to get a job working as a child psychologist with a hospital; that way I can get good health insurance.

But what happens when I get sick for weeks on end and can't make it to work? I can't afford to get fired from a job. I can't afford to miss work but I have no control over it. Because of my heart and lungs, when I get a simple cold it turns into something horrific that makes me miss weeks. My senior year I missed 70+ days of school. If I do that at my job, there is no way I'd be able to keep it which means, bye-bye insurance and I can't afford to not have that... I'd die."

It is easy to sit there and tell someone to get a job so they can get health insurance. But its different when you yourself have a chronic, pre-exisiting condition and/or terminal illness that no one wants to insure you for that reason. So please, before you tell someone to just "get a job to get health insurance" remember that we would if we could.

Hope and Love,

Becca

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.