Pure Exhaustion.

Good heavens. This post is two days late because this week has been a hot mess. The past couple of days after work I’ve come home and crashed till super late. I’m getting literally nothing accomplished. When it comes to our body, and our PH, I think there are just days like this. Some days, or weeks at a time, we sleep an abnormal amount, have chest pain and what not merely because our body is a lot more tired than we think it is. My lungs are super tired this week, so I’m merely trying to keep up.

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Anyways, T-shirt orders are due November 2nd, so contact me BEFORE THEN to get your orders in! Payment is DUE NOVEMBER 5th. If you don’t pay, you don’t get your shirt! Email me for all t-shirt inquiries. haley.ann.92@gmail.com

On a T-shirt note, there are TWO MIND OVER MATTER SHIRTS available in my Etsy shop! If you’re interested in purchasing, snag them while you can. Click on the link below!

http://www.etsy.com/shop/PHenomenalPHinds?ref=search_shop_redirect

A lot of you are asking If I will be doing a vlog again (video), and I miiiiiiight, and this time with my camera so It doesn’t look and sound crappy. Some of you have sent me more questions to answer for the FAQ section, so I’ve kinda put the two together! I will do a question video. Woo-hoo! Submit your questions over the next couple of weeks, and then I will put it up. I really don’t care what the question is, or what it pertains to. Have fun with it! Submit your questions to my email, in the comments, or even my twitter (to the right of this post.) Get your question in ASAP!

Anyways, the news for this week is finally posted! Enjoy the song of this week, which fits our Holiday perfect, Witchcraft by Frank Sinatra. A fabulous classic if I do say so myself! Enjoy your week loves, turn in orders, questions, and what not!

-haley.

Watch Your Words.

Ok y’all. I sit back, I smile, and when I’ve had it, IM DONE. This weekend, I feel like I’ve experienced that over and over, and I just watched my point be proven for me.

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When I was first diagnosed, I wanted nothing to do with support groups, mainly because all you do is sit around, and talk about your life that’s falling apart. What about that is supportive? But I actually liked getting involved with my association, and found it productive for me. Moving on, I created my blog because like stated before, I wanted something uplifting, and more about daily life rather than consistently talking about how this disease sucks all the time. We know it sucks, we don’t need to hear about it. My point is proven even further when in The Fault in Our Stars, Hazel makes fun of her support group for the same reasons. It’s a drag, rather than a place to be uplifting. I’m a member of several support groups, and I understand that we have days where we rant (like right now for instance) because we reach our limit. Understandable, especially when you contact a close friend, or relative to vent it out to them. When you have people consistently posting their rants, mishaps, medical bill problems, family issues, “I can’t breathe”, “my life is falling apart” ALL the time on one page that is labeled “Support Group”, then I’m just confused. Before you get all huffy and puffy, like I said we have those days. However, I think a support group is for asking questions, saying you have this available, or “I’ve been on this medication and I’m feeling so much better”, even to “I’m having surgery tomorrow so wish me luck”. I get those posts, and I understand those posts a whole lot better.

Bottom line, some people are turning support group into Negative Nation, and I’m tired of it. I invented Mind over Matter for a reason because mentally, if you can’t fight and accept your disease then how in the hell do you expect your body to keep up? Stop ranting. Stop being negative, and PHight. If you’re a member of a support group, watch your words, what you say, and what you post. Other people see it, process it, and linger on it. And quite frankly, a lot of use just don’t need it. Be positive, stay positive, and support each other. Rant over.

-haley.

Go Up.

I hate the holidays y’all. I don’t know what it is, but there is just something that changes in the air that makes me inconceivably sad, and moody.

I’m fine with Halloween, and after that it becomes a downhill slide of emotion. I can already feel them coming, and I’m doing my best to push forward. The demons haunting me lately are just the usual that always attack my self-image. My eating habits, and what not have just been so overwhelmingly ridiculous, and I’m tired of trying to fight to be skinny. PH doesn’t leave a lot of room for physical activity, so we have to manage how we eat, which is just fabulous. Anyway, self-image has been eating away at my body for so long, that if it were up to my mind, I would be as skinny if not more than I’ve ever wanted to be. It’s such a downhill drop.

It doesn’t take a lot of thinking to push me over the edge, but lately life has been one big frustration after the other. Dieting, money, school, work, the kids, Rocco’s health, and last night I found myself mentally dangling off a cliff. As y’all know I’ve dealt with self harm for so long now, and it truly takes a lot to pull yourself out of that hole. Most people look at it like we are attention seeking individuals, which is such a judgment. Most people who do it because of themselves hide it. I kept it very hidden for a long time because this is something I was fighting on my own, and didn’t want help. The long sleeves, thick watches, layered bracelets in order to keep it hidden from friends, family, co workers, and students was annoying, and I was at my wit’s end. Last night I ended up in front of my kitchen knifes contemplating. Why people self harm you might ask? It’s merely a distraction of pain. We are feeling emotionally stressed, and strained so we do whatever physical harm to distract ourselves to focus on an easily solvable physical pain. Physical pain requires a sometimes simple, and easy fix. Emotional pain is not as easy, you can’t just put a band-aid on it, or pop a pill. “Thats the thing about pain, it demands to be felt.” -Augustus Waters The Fault in Our Stars. I contemplated for a while last night whether I was going to put yet another scar on my wrist, whether I was going to wear long sleeves the next couple of days, or whether I wanted to ride this downhill roller coaster once again. I called Rocco over, and we walked back to my room, and went to sleep.

You only can make the decision to get off the downhill roller coaster. You may not be where you want to be right now, but maybe in a year you will. Little daily steps have to be put in motion to go UP. I’m tired of being down. We go down much faster, and scarier, and the feeling in our stomachs is sickening. Going up, now that’s progress. You have a clearer view of the world around you, and its a little scary, but exciting. Right? Go up.

fios7The Fault in Our Stars

Isn’t that quote just lovely? An awesome reminder to participate in The Fault in Our Stars contest!! Go look under the contest tab to see how! FRIDAY a winner will be chosen! πŸ™‚ Enjoy our song of the week, Chasing Pirates by Norah Jones.

-haley.

T-shirts, T-shirts, T-shirts. Oh my!

Ok y’all! T-shirts are finally official. READ CAREFULLY.

The shirts will be gray, featuring the black design (flower lungs) on the front. On the back they will read, “Pulmonary Hypertension Awareness Month 2013 http://www.phenomenalhaley.wordpress.com”. That text will be in PURPLE. A short sleeve shirt will be $15, Long Sleeves are $18! Contact me about shipping through my email. If you want to order, please email me! haley.ann.92@gmail.com. I will need your payment by November 2! I handle orders through my email only. πŸ™‚ So that’s how I’ll communicate with you! Thank y’all so much! I’m so excited!

ALSO, don’t forget to enter The Fault in Our Stars quote contest! Submit your favorite quote to my email by October 24. The computer will randomly pick its winner on October 25th! What will you win for this simple task? A Just Breathe T-shirt and a copy of FiOS. You NEED to read this book y’all. Here is a random pic from the set of Augustus (Ansel) helping Hazel (Shailene) put on her oxygen cannula. Did you have a mental breakdown? Maybe not, but I did. So romantic. Anyways! Visit the contest tab for more information. ansel

-haley.

Yay!

Yay! Short little post to let you know the coloring pages are up in my Etsy shop. πŸ™‚ You are able to pay, and download them immediately. They aren’t perfect, or amazing, but I think a good idea for passing time (psh, I still love coloring) especially for our PH kiddos! Enjoy loves! πŸ™‚
-haley.

Change Is Good.

meeeeeeeeeSo, there have been many changes this week already! The first one was I dyed my hair. FINALLY. Yes, I enjoyed being blonde, but I wanted something dark for fall, and my hairdresser is amazing! She did the perfect in the middle thing for me (I’m scared to go too dark), and I’m so happy. Also, our song of the week is Wait Up (Remix) by Tokyo Police Club. I recently discovered this band, and I’m so obsessed! Even my students love them. For sure, check them out. Aaaaannd the final, and most exciting change is MY STORE on Etsy!! I’m so excited. I’m not a website guru, or millionaire, and can’t sell my shirts through here. Sooo, if I ever have extra shirts, they will be in my Etsy store. Also, I will have paintings (that’s HOW these shirts come about by the way) that are made to order sometimes, and simple COLORING PAGES for YOUNG PH PATIENTS! Just a way for them to not feel completely down about themselves, and give them a unique way of expressing themselves, despite their differences. So, keep a watchful eye on my Etsy store for art, coloring pages, jewelry, and antiques! You never know what could be posted! The link is below, as well as under the “SHOP” tab at the top. Also, DO NOT FORGET to enter The Fault in Our Stars quote contest! The winner will be chosen October 25th!! Enjoy the changes loves! It’s a good thing sometimes!

http://www.etsy.com/shop/PHenomenalPHinds?ref=search_shop_redirect

-haley.

Happy Caturday!

So, I thought I would give an update on my little man, Rocco! He may be little, but he is a huge part of my life.

roccoIsn’t he handsome?!

Just for those of you who are new to the blog, I am the living definition of a cat lady. I’ve always been around cats, and dogs my whole life. We had a full blood collie growing up (RIP Rusty), and he passed away when he was around thirteen years old. After that, my family really didn’t feel like replacing him, and we still had about 5 cats in the house. No, you couldn’t smell litter boxes, and our house was very well-kept! Moving on, I’ve just always been around cats. I adopted Rocco spur of the moment when he was only six weeks old. I was newly diagnosed, on bed rest, and he gave me something to do. Well, a lot of things. I was bottle feeding this brand new kitten, washing him (he was covered in fleas–lovely), and he became my baby. Since then, we’ve been a wonderful dynamic duo. A little over a year ago, the girl with a lung disease learned that her cat was also suffering from possibly the same disease. Instead, this summer, we finally found out that Rocco has such a severe case of asthma that it’s almost a form of cystic fibrosis. He has a lot of gunk in his lungs that causes him to cough to the point he can barely breathe, ALL THE TIME. Last I wrote (I think) was about him not doing so great, and we were getting ready for an echo. The echo led us to the diagnosis, and now we’re able to properly treat him. Now, we treat Rocco with breathing treatments, steroids for breathing, and diet change of course. Thats about all we can do especially when he is going through a “coughing” stage. He’ll cough for what seems like two months straight, then not cough for six. Its insane, but I’m thankful for the good months. Unfortunately, we aren’t in one right now because he’s coughing as I type this.

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Overall, I did not deal with him being sick at first. I couldn’t handle it at all. It put me in a very down place for a while, because this is my three-year old cat child who is now suffering with what I deal with too. I still get very upset thinking about it, however, I am beyond grateful that somehow I ended up with this spoiled little guy because anyone else would not know what it takes or feels like, and would’ve tossed a “sick” pet out. I know the feeling because my long time boyfriend did that to me. Rocco is not sick in my eyes, but merely deals with something I deal with too. Yes, I’m the crazy cat lady, and I’m so beyond attached to this handsome kid! He was there for me as a newly diagnosed PH patient, a breakup that soon followed (Rocco was the BEST thing that ever came out of that! haha), and lord knows what else. He’s the best thing to wake up to in the morning, because I look like shit, and he doesn’t care. He is the best, and he deserves the best I can give him. Rocco WILL be healthy one day, and we are fighting to keep him that way. Best buuuuuuddy in the whole world. Rocco Ricardo! β™₯

photo(35)Cute little creeper!

-haley.

Friday Favorites

So I thought I would discuss things I’m obsessed with right now since I haven’t done this in a while. At least once a month I try to do a post of my favorite things at the moment (I try to stick to ten, and sometimes I get carried away!), but I thought I would try one for October. Its my favorite month, so why not? I hope y’all enjoy, and that this might encourage you to branch out and try new things.

1. The Fault in Our Stars

How is anyone not obsessed with this right now? The book is so fantastic (hints the contest currently running on the blog) , and it’s just amazing in every way. The fact that this is centered on her lung cancer, Augustus’s charming personality, and just everything in between about suffering from a disease makes it a must read. It’s great to those who don’t quite understand our thought process, and to those of us who deal with disease it registers even more. The movie will be here June 6th. Read the book anyway.

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2. Oxblood

So, it’s a trend I picked up on and soon became obsessed with it. I’ve found myself attracted to clothing, lipstick, nail polish, and just anything in general that’s oxblood. It’s very chic, very fall, and one hell of a way toΒ  make a statement. I’m loving the oxblood trend so far, but hoping it doesn’t get overly abused like mint did.

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3. Pumpkin EVERYTHING!

I’m totally the crazy lady that lives off of anything Pumpkin through what seems like January. Seriously. You’ll find pumpkin coffee creamer, baked goods, candles, hand sanitizer, lotions, body sprays…yea. I even have my class using pumpkin sanitizer right now! They love it! Don’t forget the famous Pumpkin Spiced Latte at Starbucks.

pumpkin

4. After School Boy Blazer by Essie

Lately, I’m really not into putting designs on my nails. I don’t know if this is laziness, or just I don’t find it “in style” anymore, but I just love slapping a color on and going. I really wanted a perfect fall color (I loooooove dark polish), and Oxblood aside, my favorite is by Essie! After School Boy Blazer is a perfect dark midnight blue, that almost looks black on your nails. But it’s not. πŸ˜‰ Also, I just really love the name too as ridiculous as that sounds.

essie

5. Fancy Earrings

So, I’ve always been kind of intrigued by fancy earrings, but lately I’ve been buying more. I have no idea why earrings intrigue me so much, but I believe that they can really kind of display your character in a way. I’m always buying bedazzled ridiculous ones, and I love it. I had to buy an earring rack thing (if you follow me on Instagram you saw it, and its awesome) but yea. I just love earrings. These are probably my favorite pair!

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6. Claire Marshall

So this seems like a bit of a ridiculous one, but I’ve recently discovered Claire on youtube, and I love her videos! She’s a makeup artist, so she does beauty, hair, fashion and vlog videos. She’s super funny, down to earth, and we have a lot in common. Including the cat obsession, our cat children look exactly alike. Not to mention, her tattoos are gorgeous as well. Loooooove her! You can find her on Instagram as well.

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7. Jaaaazzzzz

I just have to say it like that. Anyways, life gets crazy in the fall for me (school starting) so I need some calm somewhere. I feel like this is a time of year when we all start listening to “chill” music that fits the weather, and its cloudiness. Except it’s almost never cloudy in Texas. But Rocco and I have just been getting some awesome work done listening to jazz. He falls asleep most of the time, but when is he not? My favorite track ever right now is Dear Lord by the John Coltrane Quartet. I heard this song on the Cosby Show and “Shazamed” it (that fancy little app on my phone—I use it a lot!), and I LOVE this song. Other favorites are of course Pat Metheny, Miles Davis, and Walter Scharf (background music of Jerry Lewis’s Nutty Proffesor).

JC

8. Cointreau Citrus Margarita

Oh my, I found this lovely jewel at Olive Garden. I’m not a big drinker, but this was soooo incredibly good. I love orange flavored things, and this simply tastes like fancy orange juice. So in love with this y’all! I had to control myself, but I shall be going back for another. If you follow me on Instagram (@haleyann92)Β  you saw this picture a couple of weeks ago. Ammmmaaazing.

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9. The Buckle

So this is probably right now (besides Forever 21) my favorite store of all time. Yes, its outrageously expensive, but I always find something (well, a lot of somethings) that are fantastic for my body. Not to mention, the sales associates are super friendly (almost annoying haha) and can put together great outfits for you. I wonder if they’re trained in that. Anyways, I find a lot of great items I love that last me a looooong time there. I find that when I shop from Charlotte Russe, and places like so, my clothes start “pilling” which leads to a “worn” look super quickly. Nina Garcia warned us of this in her fabulous book, The Style Strategy, which taught me a lot about my wardrobe, and how to shop smart. I don’t have fancy stores in my hometown, so The Buckle seems like my go-to place, and they never disappoint. I should probably get a job there. hahahaha.

buckle

10. Halloween

It’s definitely that time of the year, and I’m obsessed with this every year. Growing up, Halloween was not scary in our family, spooky, or awful. My mom decorated the house with pumpkins, (we had a two-story house so we even had pumpkin garland wrapped around the staircase railing which was super cute), and it seemed like “It’s the Great Pumpkin Charlie Brown” was playing in every room. Halloween was about cute, pumpkin things, and dressing up cute as well. My brother was always a fireman, biker boy, or something of the sort. Dad looked ridiculous, and us girls were princess’s of some sort. It was never considered a demonic holiday, but just something to do together as a family. I can’t stand people who turn it into that, look at us like we’re awful people, but I understand where you’re coming from, so I’m shutting my mouth. Moving on, Halloween is still something fun for me (even though the costumes are outrageously slutty for my age group), and I can’t wait till I have my own kids to dress up. My house has cute decor everywhere, and even Rocco finds himself dressed up! hahaha. Anyways, I call it “Rocco’s time of year” since you can find black cat stuff everywhere. I love Halloween, and we also have fun with it in my classroom. Happy Halloweeeeeeeeen. Almost.

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Nothing Is Impossible.

Thank y’all for all the lovely feedback on the T-shirt video. I’m surprised y’all had such positive thoughts on that. Maybe if I do more, I’ll start filming them on my canon instead. Moving on, a lot of people have been contacting me about how they are plagued with idea that they can’t have kids because of PH, then I have people asking why we can’t. This is a subject that means a lot to me because its been heavy on my heart lately, and I beyond love kids. In the words of Rodgers and Hammerstein’s Cinderella, “And because these daft and dewey-eyed dopes keep building up Impossible Hopes, Impossible?! Things are happening every day!”

THE NEGATIVE

So lets throw it back to the beginning of exactly why we cant have kids. Pulmonary Hypertension is a rare, incurable lung disease that affects the heart as well, and requires life-sustaining treatment 24/7. Pregnancy is hard on a normal person, so could you imagine a pregnant PH patient? It would be very hard to get around, our exhaustion that we already have would double because of the baby, not to mention when the baby starts growing and pushes up into our chest? Also, why our heart is affected by PH? It pumps double the rate a normal persons would to get blood and oxygen through to our body fast enough. When your pregnant, your blood volume increase, therefore giving your heart even more blood to pump. Now you’re at risk for clotting. Don’t forget! You also are not allowed to take your life-sustaining medication because you’re pregnant. The mortality rate for a person that gets pregnant with PH is around 80%. So that’s what can happen to US. Lets talk about the baby…

Bottom line, if mom isn’t healthy will baby really be healthy? Mom walks around with an 85% oxygen saturation (normal is around 97%), so lord knows how much oxygen this child is actually getting. Mom is at risk for blood clots, not active because she’s tired, and Mom can’t take her life-sustaining medication because she’s pregnant with this little person. It’s not little person’s fault at all, but its a difficult situation. There are SO many risks for little person because the mom harboring and growing them is slowly dying. Labor and delivery is another story of stress on the heart as well. Bottom line, pregnancy is a serious serious serious adjustment and problem. Thats awful, because children are not.

Any normal person would say, “Well then birth control for life!” Aha, not so fast young grasshopper. PH patients already have a risk of blood clotting, heart attack, and stroke by itself. Could you imagine ingesting a treatment that would actually double that for us? Yea, not a good idea. So you’re left with crappy condoms that are not 100% which leave you with “BE EXTREMELY CAREFUL.” That sounds fun doesn’t it? I’m not going to even talk abortion because there are so many judgmental people out there that do not truly understand what would happen, but whatever.

THE POSITIVE

So after all this negativity I’ve felt like I’ve pumped you with, here is the actual positive. Yes, you will have to be extra careful your whole life. But I’ve also met people who have PH, and have had their own children AND survived! Miracles do happen, and God can work through us. Religion aside, if that just doesn’t happen, I always turn to surrogacy. It’s a beautiful thing because its your child being grown in someone else’s body. You have to find the right person (I just don’t suggest strangers) and it has to happen the right way. Look into a fertility doctor, and a OBGYN for all that mess, because I just don’t know all the rules. And last but not least, adoption. I work with kids everyday and FALL IN LOVE with them. Seriously, there’s about 5 that I would love to take home and make them mine. Sadly, kidnapping is frowned upon. But if I can love someone else’s kid that incredibly much, I think I’m definitely suited for adopting.

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It seems like there is an awful lot of negative, and bottom line there is. It’s all how you look at it. In my opinion, I pray that The one and true God can heal me (I’ve had an almost 100% recovery so far) , and if it’s right that pregnancy will happen one day AND I WILL survive. Until then, I see surrogacy and adoption as a wonderful thing that still overcomes all that negativity. And to the men out there, who judge us patients because we cant birth your children, I’m sorry that you live such a closed minded, heartless and negative life. True love overcomes such horrible obstacles. May your life be filled with its own obstacles (and it will) for judging such a personal one of ours. πŸ™‚ God bless you!!

-haley.