Fabulous Friday Favorites.

Happy Friday lovelies! You made it to the end of this week, we’re going to make it a fabulous weekend, and smile like crazies. ๐Ÿ™‚ I don’t even know anymore. Its been a rough couple of days, but a week ago today I was in a hospital bed. I don’t know what can be worse sometimes? Needles, and people monitoring how much you pee, or dealing with people who betray you? Hmm. Anyways! Its Friday favorites time because it’s been a while, and I’m not quite feeling fashionable. For those of you who aren’t familiar with this type of post, I do it to encourage you to branch out and try new things! Soo, lets jump right into it!

 

MUSIC

I’ve been on a Fleetwood Mac kick like nobodies business. Seriously, they are timeless. When you want to feel happy, you can turn on a song like Gypsy, and when you feel like crying you can listen to Silver Springs. I’ve done my fair share of crying! And come on, Stevie Nick’s fashion? WHO can get over that? Purely amazing. I would love to be her, right now please.

fleetwood2

 

MAKEUP

This sounds crazy, but I got Chella blue eyeliner in my Ipsy bag last month. What is Ipsy? For ten bucks a month you get this cute little bag, and awesome makeup designed around your preferences delivered to your door. My bag for this month is on its way, and I’m excited! My first bag did not disappoint me! Primers, eyeshadow, then blue eyeliner. I know, you probably just rolled your eyes. I literally just read an article (I think in Glamor) about how blue liners are in style, and fun to play with. This brand of blue liquid liner is AMAZING! Goes on clean, easy to apply, and a fabulous shade. It looks very chic, and yes I wear it all the time. If you want to see what all the buzz is about on Ipsy, or join, you can check it out here: http://www.ipsy.com/r/7aj7. It’s a great deal, and a great thing to treat yourself to once a month, even for younger girls. ๐Ÿ™‚

ipsy

BOOK

I’ve been attempting at getting involved on Hitrecord. If you’ve never heard of it, it’s an open collaborative company that was started by (the amazing) Joseph Gordon-Levitt. His ideas are brilliant, and what makes Hitrecord brilliant is these just aren’t his ideas. People from all over the world submit writings, pictures, designs, audio, videos, and they turn it into a TV episode, or create stories, or BOOKS, or songs. Its fantastic. Check it out if you’re an artist, or think you might want to contribute. I’m excited to read this open collaborative book that came out (three now, I believe) The Tiny Book of Tiny Stories.

hitrecordbook

 

CLOTHING

I am so beyond obsessed with kimonos. They are so in style right now, and I hope they never go out of style. They make a statement, they’re comfortable, they’re artistic, they are everything. You can find one that I’m sure would interest your style pretty much everywhere. Forever 21, Etsy, and if you are willing to spend big bucks, Free People. Channel your inner Stevie Nicks, and sport a kimono.

kimono

 

SHOW

My inner 90’s streak has been peaking through this month, and I’ve been watching 3rd Rock From The Sun almost nonstop. The humor is fantastic especially on a bad day! Sit down, and watch Joseph Gordon-Levitt’s sass mouth, and long hair cheer you up. I never thought alien humor could ever interest me.

thirdrock2

 

NAIL POLISH

This month has been so crazy that I don’t even have an official favorite nail polish picked out. But, I’ve been wearing nothing but bright pink on my nails to make me look tan. So, such brands as Piggy Polish, and China Glaze have great neon-like options. You do need to be prepared to have a glossy top coat ready (you should have that anyways) because they don’t say on the bottles, but most of these colors will dry matte. AKA, no shine. So, prepare thyself!

chinaglaze

 

MOVIE

I warned you about the 90’s streak….but I’m so in love with 10 Things I Hate About You. If you, or your daughter is having a sucky day, pop this flick in and enjoy Heath Ledgers adorableness, as well as Joseph Gordon-Levitt. Such cuties, and the perfect 90’s comedy. Rest in peace Heath.

tenthings

 

DRINK

Seriously, I haven’t been drinking a lot lately, or going out. I’ve hit an exhaustion period with my PH where all I want to do is lay around the house. However, when I did go out, my friend Jess always gets me a White Russian. Vodka, Kahlua, and milk. Delicious.

whiterussian

ITEM

Like I said, this has been a super chill month, and I wish I had better answers for y’all. But, my favorite and most used item this month would be my Betsey Johnson cards. I’ve been sending out Thank you to loves who have helped me, and what not, and I’ve loved writing actual letters. Plus, who wouldn’t be excited to write with a Betsey Johnson stationary?! You can find the collection at your local Michael’s store.

betseystationary

Okay loves! I know I wasn’t super exciting, but its the end of the week, and we are all tired! Celebrate, smile, and relax. Dont forget TODAY is the LAST DAY to participate in the current contest!! Check out the CONTEST TAB for more details!! ๐Ÿ™‚

-haley.

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Good Business, Good Health.

This week has been…interesting. I finally stopped taking my pain, and nausea pills because they were making me feel crazy. In the meantime, my short of breath has gotten worse, and I’ve been wearing my oxygen! Good grief I hope things improve soon.

Anyways, on top of this dreary week, I wanted to bring up a subject that might be a thorn in some people’s paw. However, view it as me taking the thorn out of your paw, and helping you. It applies to everyone, and its a fine line we as patients walk everyday. But this is a great way to keep yourself in check.

Your disease is not a pity party theme.

There, I said it. We do feel as though we should gain respect from others, and they should notice what we go through. If they do, then they do. Its our job as awareness raisers to grab their attention, and show them, in a unique way, what we deal with, how sucky it is, and why they need to know. Thats just good business. Thats turning your disease into magic, and doing what you’re supposed to do with it, or what you feel called to do with it. Some people have PH, don’t care that they have it, and don’t want to make a fuss. I respect that. They don’t feel called to awareness raise. Then they are some who are making people want to slam the door in their face. What could we do that is turning people off? How could they not want to help a poor person who can’t pay astronomical medical bills, and who can hardly move fast, and doesn’t sleep, and– see? I’m doing it right there. It’s the wrong way to handle all of it.

Pulmonary Hypertension is awful. Pulmonary Hypertension is scary. It’s scary that from day-to-day you have to wonder whats happening inside your own body, and if it’ll make up its fickle mind to live. It’s scary to look so normal, and to feel so normal that the public doesn’t recognize your disease, and before you know it, you don’t either. Pulmonary Hypertension is a big nasty invisible monster, and our natural reaction is to get un-happy. But the fact is, we all have enough negativity in our life. Sure we can bitch, and moan, and post awful things, but people are drawn to positivity. End of story. They like seeing things that make them happy. They like seeing realistic things as well.

happy

So, what could I be doing wrong? You aren’t doing anything wrong. How could I be portraying my disease? Now, there’s a question. I can’t speak for anyone else, but I am drawn to strength. Pulling your boot straps up, putting your cannula in your nose, and trucking forward. I hate pity parties, any kind for that matter. I don’t care if you have the worst of the worst disease, and the worst of the worst situation. No one will be in attendance at a pity party, because quite frankly, its stupid. People see that, and they scroll right on. Portraying strength, showing strength when you feel like you have nothing else to give? People will read that. Portraying the reality, and how you’re are dealing with it somewhat positively? People will support that, support you, read that, love that, and anything else.

Dont portray Pulmonary Hypertension as this big sad monster inhibiting your life, and your depressed, and its awful, and your life sucks, and you can’t pay the bills…no one likes that. No one wants to support PH. Soon they tag PH with whiny in their mind. Show them facts, and show them strength while remembering, and not forgetting what you deal with. By doing this, you will in turn find your own strength, and move forward.

-haley.

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?”

takeabreath

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.

Anonymous Haley.

So this has been one crazy week! Its Saturday, right? Tuesday night I had a fever, and some pretty bad abdominal pain that continued into Wednesday. Dad and I decided to go to the Emergency Room, and sure enough it was my appendix. I was admitted, finally had surgery Thursday night, and I’m finally home now. I’ve never been in the hospital for more than eight hours, so this was definitely a new experience.

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While hospitals, needles, and whatever else have never bugged me, this time I was highly disturbed. I’ve never been under anesthesia for a surgery, and this would be the first necessary time. Most people are shocked to hear that I do not want to be under, but its a serious fear of mine. While laying in my bed waiting for over thirteen hours, I tried over and over to tell the surgeon as well as the nurses that my primary doctor needed to be contacted because of my Pulmonary Hypertension. Everyone knows that with PH, and right-sided heart failure, anesthesia is a huge risky deal. Finally, I decided to call him myself in which he immediately, and calmly took action. Thursday evening I was wheeled down to the Pre-Op room in which only my dad was able to wait with me before they took me back. At this point, I haven’t seen my primary, I have no idea if the doctors are actually prepared for me (I know they’re doctors but they still had no idea to what extent PH is), I’m on the edge because I have no idea if I’m coming out of this alive, and anyone who knows me knows I’m going to snap like a twig while watching and judging everything. Let me tell y’all, I had the worst Pre-op nurse in the history of all my visits. Like I’ve stated many times, my dad and mom know exactly what they’re doing especially in this hospital. She was condescending towards them, and I could see the flames shooting out of their eyes which had me extra wired. On top of that little disaster, my sister was telling me by in which we acted our stupid goofy selves that doesn’t include hugging, and the nurse says, “Well if something happens you are going to be sorry you didn’t hug her.” WHO in their RIGHT MIND reminds the patient of death RIGHT BEFORE they are going back? That is horrendous patient care on so many levels that I can’t even go into. Mr. anesthesiologist decides to come back and talk to me in which he asks about my PH, then tells me I look nervous. I answered yes, then he turns to my father who I can tell is getting wired as well and says, “Well you don’t have to be nervous since your daughter’s pregnancy test came back negative.” I am the type of patient where I will do everything myself, because I don’t want my privacy violated. I don’t even let them publish my room number, so when people call, they have no idea where I’m at in the hospital. What a privacy violating, horrifically not funny thing to say to my Dad, and also how degrading to say in front of the patient. I would’ve murdered y’all, but I looked up and saw my primary walk in, and burst into tears because I was so relieved someone with a brain had entered the room. While talking to the anesthesiologist (Mr. not being pregnant is funny) My primary discovered he had the completely wrong medications picked out for me that would’ve clashed with my breathing. Thank God for him showing up, and chewing the guy’s ass. After he talked to me for a little bit, and exited with my father, I was wheeled back, moved to the operating table, and don’t remember a thing.

So after my life story that I just had to tell y’all, I hope you dealt with my complaining. I do not know how people who stay long periods of time do it! I lost all sense of time, privacy, and everything else. However, I had excellent nurses, and nurse techs helping me through everything! Such wonderful people! So my loves, that’s why I’ve been more like anonymous Haley instead of PHenomenal Haley! But I’m back! Thank you to everyone who texted, commented, prayed, sent positive thoughts, and overall showed appreciation towards me. You really learn who your true friends are when they are just as scared as you, and trying to keep track. Thank you so much to people I havent even met who showed support! I felt beyond loved!

Now for a speedy recovery (hopefully) , and that my giant C02 pregnant belly deflates soon. Oh, but I’m not pregnant. Har Har Har. Prepare yourself for a new contest, and a hospital do’s and dont’s post next week!

-haley.