Fifty Facts.

I hope everyone is enjoying their week so far. I had a terrible weekend, so I think I’m going to unload with a ton of emotional writing on the blog. So lets kick it off with something a little more light-hearted like a post of “Fifty Facts” on myself. Lets see how well this goes.

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1. I was named after Haley’s Comet.

2. I hate space.

3. Speaking of space, Tony Nelson is probably the only astronaut to ever have my heart, and I wish I could be Jeannie when I grow up. (If you didn’t get that…shame.)

4. My dream career is to teach, not to be a test-giver, or scorer.

5. The mountains are heaven on earth.

6. I am spiritual, not religious.

7. Studying Native beliefs in a way made sense of how I should be living my life.

8. Rain, and clouds are the most favorite of favorites. I’m not into sunshine.

9. I believe in equality; and yes I’m a feminist, not a man-hater.

10. I’m an old soul.

11. I want four kids, possibly five. Don’t tell me that’s too much, I’ll figure it out myself.

12. Rocco Ricardo is my love.

13. I don’t seek a relationship, or marriage. What will happen, will happen organically.

14. I believe in mother nature’s healing.

15. If you don’t like my music, it will be difficult to get a long with you.

16. You cannot understand the creators love for you if you do not understand how to love the people you can see. I believe in loving people.

17. Throw your beliefs onto me, and I will throw you out of my life.

18. Disrespect me once, and that’s the only chance you had to begin with.

19. I was a trouble maker in high school, not for usual reasons. I just believed in calling it how I saw it which made people mad.

20. Yes, I have severe anxiety.

21. I think I eat grits once a week. Its comfort food. Is that sad?

22. Eggnog latte’s are my favorite holiday drink.

23. Despite my opinions, I am a very open-minded person.

24. I like to adapt.

25. I don’t like labels, or titles, or status’.

26. I’m inconsistent because that’s just how I function, if you can even call that functioning. There is no time management skills in my life, and I own up to that.

27. I love a lot of qualities about my hometown, but I strongly dislike the values and people.

28. I don’t believe in watching the news.

29. I believe its important for your kid to be involved in a physical activity, but an art based one as well. Art is beyond important, and the ability to communicate those underlying talents and emotions. Art is a universal language to be able to sit, communicate, and understand more.

30. I can’t decide on a favorite anything hardly.

31. My mind works two ways; utterly obsessed or completely uninterested.

32. I’m not shy, or moody. I’m just socially selective.

33. I am weird, and I don’t care.

34. I own a record player, typewriter, and eight track table. Yes, they all are used regularly.

35. I have a heated mattress because who survives without one?!

36. I plan to be in New Mexico within five years.

37. Writing is a happy part of my life, and I do it for me.

38. Being a patient with Pulmonary Hypertension gave me a lot of direction, determination, and opportunities. I’m glad they were here, and now I’m ready to move forward.

39. I wrote a book. I don’t know if I can ever publish it because yea…

40. I collect wedding rings (obviously cz.)

41. This is the first Christmas where I’m actually getting into the spirit. I bought a tree for my back living room…

42. I don’t actually know how to correctly play any instrument. I pick them up, and I can play by ear. Its something that my brother, dad and I have in common.

43. I can’t stand people who cannot listen to others opinions. When you walk around believing only what you think is right, or what you know, you live a very close-minded life. How terrible.

44. I am an accessory NUT. I love jewelry, coats, shoes, bags…you name it. Clothes are another nightmare.

45. My favorite part of my job is holding screaming patients down. SO FUN. Sounds terrible, I know. I miss teaching my students, but I feel like I’m exactly where I need to be.

46. Anything mid-century, or sixties, and I would probably love to own it.

47. Dancing is my favorite. Any type of dancing.

48. I used to never watch anything scary. Now I’m almost through all seasons of American Horror Story.

49. I’m not a very private person. What ever happens, I will tell people; there are no secrets.

50. I’m attempting to enjoy my life, and love me. Its not working out so far.

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More To It Than Meets The Eye.

Invisibility; one of Pulmonary hypertension’s biggest, and most irritating problems. I have three types of people in my life. The people who are there when something is up, understand, and are doing their best at supporting me. The people who are attempting to learn, and understand this confusing disease, then last, the people who have heard it, seen it, probably don’t understand, and “don’t have time to.” We are human, and tend to do stupid human things like judge others on their outward appearance. Ahh, what a fatal mistake. Doctors judged me on my outward appearance for years, so long in fact that when I was eighteen they didn’t know how much longer I was going to live. Yet, I looked perfectly healthy. I may look fine, and act fine, but PH is still an extremely fatal disease. Judging people by their appearances is not just a social flaw, but a life threatening mistake. I can’t even count on both of my hands how many children, just children, died from PH this year, and how many people are in the hospital PHighting it right now. Its ridiculous. So how much longer are you going to think that this is “no big deal?”

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With that being said, I hear patients talk all the time that they wish their best friends, significant other, parents, and sisters brothers cousin would understand. Remember PH’ers, they are not going to understand, and really it’s not their job to. Their job is to be supportive towards you. If they are trying to understand, then bonus points for them. Support is really the main key in lifting a patient’s spirits, not understanding. I’ve made a post like this before, but here I go again with just a little updated refresher!

THE DO’S AND DONT’S FOR THE PATIENT IN YOUR LIFE

–Don’t Suffocate

When something happens, a new diagnosis, loss of a family member, bad test result, we tend to flock to that person, and back them into a corner for a response. Wait until the crowd dies down a little, and for a quiet moment to show your support in a non-harsh way.

–Don’t Ignore It

“Everyone’s texting them, so it makes no difference if I do.” Really, I mean really? What animal taught you to think that way?

–Do Send a Card

The art of the hand written note, or letter, is pretty much lost. We have social media, texting, Facebook cards, and everything else that substitutes it. When someone receives a card, it shows that you went out of your way to sit down, and write them. It’s a nice thought that few go through with.

–Do Respect Privacy

It’s not everyone’s business that their cancer, disease, or whatever is back, and got worse. Some of us patients are extroverts, and vent when something happens, and others invest privately in a few people. Respect that if you are one of the few chosen. My rule is, if they’ve posted on social media about it, then its ok for me to share with who I think I need to.

–Don’t Offer Fake Support

There is a difference in real support, and “support.” For example, the girlfriend in the movie 50/50 wouldn’t go to chemo with her boyfriend, because she didn’t want to mix with those “bad vibes.” So she only drove him to treatment. Horrible, horrible, horrible girlfriend. Real support consists of hospital stays, visits, knowing exactly what is going on, checking up no matter what time it is, going to events, helping at events, and not leaving the patient even questioning if you’ll be there.

–Don’t Make It a Big Deal

Don’t freak out, make it big, and exaggerate everything. It makes it hard on the patient when the disease becomes the rock. It’s just something that happened to us. When you constantly remind us of what flaw we have, its annoying.

–But DO Make It a Big Deal

At the same time, don’t blow it off. For me, my “diagnosis anniversary” is a big deal. When you blow that off, that can set me off. When a conference, meeting, 5K Marathon, or support group meeting is no big deal to you, you are kind of failing, and being an asshole. It’s a tricky balance of knowing what to make big, and when to do it.

–Don’t Exhaust Yourself

We aren’t asking for the royal treatment by any means. This friendship, like any, is different and has its quirks. It should be no big deal to you. You can still make all the difficult stuff just as much fun, and easy to breeze through. Just like any relationship, it takes two people, and appreciation to make it work.

 

This by far isn’t everything, however, I’m on a series of different pain medications after surgery this week, and I’m having a little trouble focusing! haha! Thank you to every person who texted, prayed, checked on me, and showed true support. It means more than you know! Now, let’s have a fantastic Monday. Check out the NEW CONTEST UNDER THE CONTEST TAB!! Its easy, and exciting! Also, Song Of The Week is BAAAAAAACK! Enjoy the new hit single, Cheap Sunglasses by RAC.

-haley.