Too Much Pressure.

Hello August! I feel like I’ve made it over a crazy couple months of non-stop on-the-go Haley, and now things are slowing down. More writing, more calm, and more happiness. 🙂

I finally had a two month PH checkup, in which everything is ok except for a high heart rate out of no where, and I’m being referred to a new specialist that is closer rather than going to Houston. Also, I met a new primary doctor to handle all other issues who blew me away with not only his looks (hehe), but him thanking me for choosing him, and taking almost an hour examining me from head to toe to establish me as a new patient. He was very precise, and already knew Pulmonary Hypertension inside-out, and was quite interested that I had it. A PH patient’s whole world is full of pressure. The word hypertension literally means high pressure, high pressure in the lungs, high pressure in the heart, and I also found out that the pressure in my eyes is even high. When my new primary said, “I think we need to check your kidney’s for high pressure” I through my hands in the air with the response, “if there is anything that could ever have a pressure in my body it is high.” He laughed, but I was not as amused.

photo(64)

You see, with all this “pressure” existing within my body, it makes it extremely hard to deal with outside pressure from other unnecessary things and people. Someone said to me to other day, or more yelled, “I know you’re done” and that struck an angry chord. I walk around everyday breathing twice as much as you, with twice the pain, and other everyday issues (like almost passing out from just bending over) and I’m just tired. Why? Because I have a disease that just so happens to have a side effect of chronic fatigue. When everything in my body is built up to functioning on a high level with outside demands, my body sure does reflect “done.” Emotionally, and really, I’m trying not to be done, but my lungs really want to fold themselves in half. Sometimes people really do not comprehend the realities of this disease…but your lungs and heart are a big part of why you are able to read this. When they don’t work right, despite how fine you may look, you really aren’t. People think I’m lazy, people think I exaggerate, but one of my PH friends who is my age (and shares my name) just received a double lung and heart transplant. While being prepped in the hospital she looked damn fine, because it’s an invisible disease. Appearances are deceiving.

Overall, you as a patient, or even just a caregiver, or person will have a lot of pressure throughout life. When its unnecessary, get rid of it, and embrace what truly matters. I’d rather my heart be overjoyed than overworked.

Song of this week! Houdini by Foster the People. Its fun, and perfect right now. Enjoy this week which is the start of a new month!

-haley.

Shopping? YES!

Finally! After many many months of people asking, begging, and wondering…I can finally say that my Just Breathe Lung T-shirts are for sale! The catch? These are left over Tee’s from the Lantos grant. There is a very limited amount of sizes available. It will very much so be a first come-first serve system! Follow the directions below to finally purchase one! I will work through email only. 🙂 haley.ann.92@gmail.com    I hope everyone can finally have one! Thank y’all for being supportive, and patient!

lungtshirtdirections

Thank Y’all.

Finally, I am home. I have nothing left but exhaustion, and happiness. This was such a perfect trip! I wanted to thank my readers, and the PH Association for making it possible. This was an absolute highlight of my life. Most of you followed on Facebook, and Instagram, and thank you for that! I am so glad you got to see the events unfold online. To those who I finally met in person, that was such an uplifting experience. As most of you know, I was nominated for the Young PHA’s Outstanding Citizen Award which still baffles me. I watched so many other PH’ers get on stage to accept their awards, only to hear about all the amazing things they’ve done. They are some PHenomenal people doing PHenomenal things! It was hardcore proof of the importance of connecting with other people who are affected by the same disease as you. Get involved! It will change things. Congrats to all of those who accepted an award, got to attend conference, had an amazing time, branched out, and learned. Everyone has done amazing job in the PH community.

As I’m coming up on my fourth year anniversary of being diagnosed, I’m reflecting heavily on my original feelings towards this disease. How absent I was, blank, unresponsive, and I possessed not an ounce of fight. When you are diagnosed with anything it’s really starting a challenge of overcoming yourself. That sounds easy; you know you better than anyone else. Except, most people leave out one huge detail about a diagnosis. You are no longer you anymore. From day one, you are wearing a completely new skin, adapting to what feels like a completely new body, treatments, a new circle of people (or survivors) and everything you thought you once knew about yourself is dust. Well, some of it. Now you will be tested on your mental, and emotional strength, how far will you go to physically overcome, and to one day make it to an infinitive finish line called “survivor.” Overcoming yourself is not easy; it’s the hardest thing you will go through. In the meantime remember, that mental dominates physical. If you can understand, comprehend, and get a handle on this mentally…your body will catch up. Mind over matter. I had to dominate my own self, swallow pride, not listen to certain thoughts, cut certain people out, let doctors in, and really figure out what it is I exactly needed. It really is possible to pull yourself out of that dark place. The only thing keeping you down is you. Look at yourself and heavily evaluate what is going on, and what needs to be changed. It took almost four years exactly to get somewhat on the right track. You will fall off every now and then, or take a wrong turn. I struggle mentally, emotionally, and physically. This is a lifetime disease, and until we can get that cure, it will be a lifetime battle. Find the will to live, and hold onto it. There is beauty in this struggle. Who knew I would get to wear glitzy shoes, and accept a ridiculously heavy glass award, meet fans, take pictures, stay in a four star hotel, have people ask me questions, and have my face and story all over the world because of PH? Quite frankly, I’m thankful.

Train your mind to see the good. Mind over matter. Thank you to everyone for showing me the good side of PH! Its been a trip. Pictures are below! Thank y’all again.

-haley.

Instagram! @haleyann92

Facebook.com/phenomenalhaley

indycollage1

indycollage2

 

Fashion Friday Favorites!

Its FRIDAY y’all! Get happy! Friday Favorites are something I love doing, but when is the last time I did fashion friday? Today you’re getting two in one. How special! Friday favorites are existent to encourage you to branch out, and try new things. That makes life just a little more fun. Fashion Fridays are geared to help us with our bodies, and things we might be suffering from as patients. Onward!

FRIDAY FAVORITES

 

-Music

How did y’all know?! Of course its the Fault in Our Stars soundtrack! The directors, and whoever else did an amazing job with music just like the movie itself. This is something I was most worried about because I am a huge music person. I wanted my already favorite movie ever to have a fabulous soundtrack with unknown songs. They are so fantastic! I’m having a hard time deciding my favorite, but overall, I cant wait to have this on Vinyl.

tfiosmovie

-Makeup

I’ve invested in so much makeup lately, I do not know where to start. I think the more you experiment and get used to makeup, the more crazy you get. LimeCrime is probably my favorite to glance at, and finally I ordered some of their product the other day. They have extremely bright colors (even PH colored lipstick!) and I ordered the Black Velvet matte lipstick. BLACK?! Yes, black. I’m extremely excited to wear this “color” and test the high quality of this brand. So far, its had fantastic reviews. I’ve checked my mailbox fifty times already this morning since its supposedly out for delivery. I’ll post follow-up photos on Instagram if you are curious!

limecrime

-Book

Lord have mercy y’all. I’m in the process of trying to read like five books at one time. I’m really trying to get through An Abundance of Katherines by John Green, because anything by that man is amazing. I’m also fixing to start something called Never Let Me Go that a friend suggested. I also want to read Perks of Being a Wallflower, and Empire of the Summer Moon. Thats my ridiculously long reading list right now!

books

-Clothing– FASHION FRIDAY – FAT ANKLE SUMMER FASHION

Honestly, like with makeup, I’ve bought a ton of new clothes lately. This whole new trend with these flowy bohemian printed pants is absolute perfect summer fashion. No restrictive jeans, no shorts so you can hide your legs if you want, and if you’re swollen they hide your ankles! However, these printed pants are a little tricky. Unless you are a literal stick, you HAVE to try them on. They can hug in all the wrong areas almost 100 percent on the time. The super stretch spandex ones (mainly found at boutiques) will hug every crevice on your body, and out line every area. Beware. You really want to find the pants made of actual cloth, like cotton, and what not. I’ve only found one pair that hugs my legs in a good way, fits comfy, doesn’t outline weird areas, BUT are ridiculously long so I’m about to cut them. They are by Billabong, and were worth the investment. So if you are looking to spice up your wardrobe, remain comfortable, and hide some summer Edema, look into these lovely things! Pair with a neutral top that is not baggy, or printed. Remember, ALWAYS try them on!

billabong

-Show

I jumped on the Meth bandwagon…and started watching Breaking Bad. I wasnt too impressed at first, but it definitely has me hooked! If only I was making that kind of money to pay off my medical bills. It is a little rough, but its the kind of twisted that you end up swallowed in. Plus Aaron Paul? Um…Yeah, B*tch! (You’ll get that later.)

breakingbad

-Indy

Words cannot describe how excited I am to experience a new state, city, and to meet PH patients in person! It’s insane to me how the same month TFiOS comes out, I’m going to the exact city it took place in, and filmed! Lord have mercy. I encourage everyone to travel as much as they can. Make the arrangements, and stay safe while traveling! It’s not worth to sit at home. It’s a beautiful life; get out and see it before it’s over.

indianpolis

 

-Nail Polish

It may be summer, but I still can’t get into the swing of a bright polish. I’ve been wearing a lot of white, and just bought a new Essie polish titled, “Bahama Mama.” It sounds like summer, but it’s actually a pretty dark shade as well. I know, I know…but I don’t care.

bahamamama

-Movie

No comment.

fios6

 

-Accessory

I’ll just throw it out there that Texas is the best, hahahaha. Besides that fact, the state shape itself is just awesome and the most identifiable. I’ve been searching for a tiny little Texas necklace for a while now, and finally found one yesterday in a  small town boutique. Its perfect! You can shop on Etsy if need be to invest in your state pride.

Processed with VSCOcam with x1 preset

It was a somewhat short Friday Favorites, and Fashion Friday all rolled into one! Enjoy your Friday loves! I’m going to continue to drink coffee, listen to the TFiOS soundtrack, and repair myself emotionally. There is a reason its the number one movie in America right now! See some of y’all at conference. GET EXCITED!

-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

 

O2 and Iphones. What?

So, the other day (by the other day I mean like two months ago) I found myself experiencing some chest pain, and I just knew my oxygen was low. I found my little O2 sat machine, and of course it stopped working. We’ve attempted to revive the damn thing several times, but it flat lined a while ago. So, I settled on taking my blood pressure, but as anyone would know that still isn’t the same as knowing where your oxygen is. What to do…

I turned to my phone of course. Why not? I ask the damn thing questions, it has to be able to know something! Sure enough when searching the app store I found the perfect something. Its called the “Oximeter” app by DigiDoc. With that being said, this is an app on your phone. NOT a thousand dollar machine that ensures accuracy for the safety of the patient. This is an app, on whoever’s iPhone that downloads it. If you one hundred percent depend on this thing, then it’s probably not a good idea. You really have to get a feel for it, as well as its faults and quirks to know your true health, and know if you are at risk.

How is it measuring my O2, and heart rate? You take your fingertip and cover not only your flash, but your camera. It takes a couple of seconds if you are super still, and after its finished, it records your results. So it’s always nice to have a record of how you’ve been to show your doctor. Now, Accuracy. I’ve noticed when my oxygen is low the app freaks out. If it is below a reading of ninety percent, it will just saw low rather than how low. That kind of bugs me. But, at least I know its below ninety. Usually if I’m feeling not-great, and it reads something like “96” or “94” I know it probably means 92ish. Overall, I take in to count how I’m feeling, breathing, heart rate, BP, THEN that number.

pulsox

I think this is a fabulous app to have just in case, but should not be your only source. For right now its mine because I’m not a huge risk. But when traveling, and bringing your machines isn’t always an option, this little app should be. For $2.99, I think it’s a great “back up” investment.

Happy Throwback Thursday everyone! This is absolutely my favorite “Picture day!” Anyone knows by now that Instagram is my favorite app because I love pictures. Here is my throwback pic! This was taken at Philmont Scout Ranch in Cimarron, New Mexico. My brother was getting back on the Kwahadi Bus (Native Pride!), and we were telling him bye. I’m sure Dad was helping load the bus. Pictured from Left to Right: My Grandpa, John, Mom holding Holley, then meeee. Enjoy today!

Processed with VSCOcam with f2 preset

-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

Patience is Prettier.

Happy June everyone! I can’t believe I’ve finally made it to this month. Exactly two weeks until I leave for Indy! This is a very busy time, and I wanted to thank everyone for their patience. Not only is attitude a very tricky, and contagious concept, but I think patience is as well. How can I put this…

I am not just some college kid lounging around, going out with friends, and blowing things off. My average day consisted of getting up in the morning, working at the school until around three, then from there going straight to my other job till around eleven o’clock at night, coming home, trying to catch up on blog things, but most of the time I fell asleep. I am a very busy person. Now that school is out, I’ll have little opportunities and small windows of time to get things completed. In basic words; I push myself enough. If you push me, I will push back.

patience3

I’ve encountered some pushiness, and non patience. I understand frustration, but I will not be understanding in these situations. Right now I’m lucky enough to remember to make a blog post! So, patience. This is something that is quickly trickling out of our economy. We have smart phones that process things faster than computers, we have supermarkets with two-hundred cashier lanes open so you can get through faster, we have fast food drive throughs, and we want everything done now. We’re living a life where we don’t really have to be patient. So when the time comes to wait a whole 30 seconds for the internet to load, driving around a wreck, or waiting in line for a spray tan, we FLIP. Patience is a fabulous thing to exhibit. To hear the excuses of “I’m a paying customer” shows me that you value money over respecting another person. To hear “its their job” is another example of the non-respect you have for another person. When you are understanding, show compassion, and take time to evaluate the situation rather than just your feelings on your side of the story it begins to get easier for everyone involved. The other day I waited almost forty-five minutes on just my food. I got a little questionable of what was going on, but was not upset with my waitress, or cooks at all. I was once a waitress that lost an order too. This is life, full of thrown together mishaps, and somehow (maybe) we make it out alive.

Please look around and acknowledge the humans around you. Exactly that, they are human. Patience was built into your body. Start exercising, and practicing it more; I’m having to work on it too.

Thank you again for everyone’s patience.

Congrats to Karla, our Hazel Grace contest winner! TFiOS comes out FRIDAY! Our song of the week is Icarus by White Hinterland. Perfect, breathable summer song.

-haley.

Attitude Adjustments.

Attitude; Thats such a negative word to me. In fact, I just had discussions with some of my fifth grade girls, and how they are over loaded with it. I make them think that because they are growing up they need to learn how to drop this so-called attitude, but who am I kidding? It only gets worse with age sometimes.

This simple little moody word has a lot of power behind it. It’s a force of destruction, a glimmer of hope, and a knife in someone’s heart. When you step back, really look at yourself, and evaluate how you communicate with people you start to see that without actions, you’re left with your words only. Your ONLY communication. Your attitude; It can take a life of its own, and overpower you if it wants. What vibe are you giving off? How are you communicating? Whats overpowering you?

I’ve seen so much attitude lately that it completely blocks off any actual communication. People just don’t want to listen, they just want to be mad. They want to jam their words into people’s feeble ears, and make their points boldly. In return, you were never heard. I’ve seen humans with such bad attitudes that the oxygen in their nose is no longer beneficial because spiritually, and emotionally they just cant believe in themselves, or others. I’ve always said you had to drop barriers to let the good overcome you. Nothing will happen with a door shut. Drop it, open a door, and open your ears. Listening to others more than  you speak, being patient more than being forceful, looking for improvement rather than making points is so much more helpful.

Attitude; it can be a lifesaver. Literally. I had such a bad one about my disease. I really wanted to just exist within it rather than fight it. Developing, listening, improving really did change things. It changed my outlook, it changed my attitude. I became a teacher instead of a cop. I felt like instructing, and listening more than I did pointing out error. Some of us even had to make attitude adjustments about wearing our oxygen, me included. My attitude saved my life. Step back, and really evaluate yours this week. Is it worth changing? Because you are worth it.

Congrats to Karla, our contest winner! Thank you to everyone who submitted a “Hazel Grace” picture! They are all so beautiful. Our song of the week is So Many Details by Toro y Moi. Enjoy!

oxygencollagewinners

-haley.

Trapped; Pulmonary Hypertension Awareness Day.

Ahhhh, we meet again. I am alive, I don’t know if I’m well, but finally I’m making a brief post. The past few weeks have not been easy. Working fifty plus hours a week, running marketing for a local youth group, and bouncing back from surgery leaves little to no free time or sanity. Thank you to those who were actually patient with me. On top of that I’ve been wrapping up my Lantos project that I did with the Pulmonary Hypertension Association, and now I’m getting ready for conference! I’m definitely excited to meet some of y’all there.

Moving on! Today is national Pulmonary Hypertension Awareness Day. As y’all know, I want you wearing your Haley Ann shirt (if you have one) if not, wear purple! Take a picture and email me, and you could be featured on here or my facebook page. I’ll also be instagraming it up! You can find those two social media sites below.

facebook.com/phenomenalhaley

@haleyann92

About a month ago at a doctor’s appointment, I expressed some mental concern to my doctor. My anxiety level is high, and is definitely reflecting in my physical body because my emotions are so high-strung. His reply was very dignified, and he said, “I think you are very stressed, and very in tune with your body, so lets relax and not assume the worst.” His words actually  helped, except one small detail. I’m not in tune with my body at all. In fact, I feel as though I’m always fighting it. I want to be free; free from pills, needles, surgeries, check ups, oxygen, and its weird not to be able to do that. It’s weird that your soul is stuck…inside a defective body. I mean, really. For me, its been nothing but a disaster from day one of my existence. I’ve battled bladder, lung, heart, spinal, nerves, skin, and just about anything else. I know a lot of people out there feel this way too, and I’m definitely not special. Two weeks ago I was checked for skin cancer, and all I could think was, “Really? Haven’t I paid my dues?” At some point you just have to throw your hands up, and surrender.lungsrosesI’m not saying surrender to death by any means, but surrender to acceptance. Accept that this body is so fragile, and so beyond flawed despite its miraculous existence. The best thing you can do is step away, slow life down, and make time to care for not only your defective body, but your amazing self. YOU. Not just the body you are trapped in.Pulmonary Hypertension is a big, incurable, full-time disease. I don’t just suffer from it May 5th. I’m a year round, lifetime guaranteed customer of it. Take this one day to support those people who are caught in a trap.

-haley.

Song of the week! A much needed relaxing tune; So May It Secretly Begin by Pat Metheny

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. 🙂 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. 🙂

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!! 🙂

-haley.

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.