Life With PH, PH Health

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.

Advertisements
Life With PH, Personal Life, PH Fashion, PH Health

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

 

Life With PH, PH Health

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

Life With PH, Personal Life

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.

Life With PH, Personal Life

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.

Life With PH, Personal Life, PH Health

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

Life With PH, Personal Life, PH Fashion

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.

Life With PH

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.

Life With PH, Personal Life, PH Health

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.

Processed with VSCOcam with b1 preset

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.

Life With PH

I Have No Fear; I Have Only Love.

Isn’t it crazy that after a while we don’t even feel alive anymore? After diagnosis, we spend almost every day of our lives PHighting to stay alive, yet after all this exhausting work we don’t even feel alive. We are numb; numb to hospitals, numb to needles, numb to bad news, and eventually numb to any type of emotion that requires work. How do we find ourselves on the track to living life, and feeling alive once again? Lets work on that this week.

stevie

Obviously when we have to “fight” for things in our life we get pretty tired. Putting up a fight, I mean, doesn’t that prove our love for something? Fighting to stay alive because it’s so precious, fighting to keep someone in our lives because we love them so much, fighting to prove our points, fighting off feelings? Soon, you just realize there is too much fight, and not enough life. I think this society has glamorized “fighting” for things, as if it’s so “sweet”, and makes it seem worth it. What about relaxing? What about enjoying life? What about things unfolding organically, and naturally? What about someone who you don’t have to work on keeping in your life? That sounds pretty brilliant to me. Let me put it this way; I’ve fought for pretty much everything, including my life, obviously. I’ll be doing that the rest of my time until these medical geniuses find a cure. I don’t have time to fight for anything else. That goes for people who aren’t even suffering from some type of disease.

Life is so incredibly short. The only things you should be fighting off are dark feelings, dark people, dark demons, and of course for what you believe in. Dont confuse that with fighting for other people. Fighting for them to be present, fighting for them to understand, and fighting for them to love you. There is no time, no energy, and nothing else that needs to be wasted on fighting. I will not fight a feeling; if I have it, I express it, and what happens from there happens. I don’t drown my feelings out, I feel them full on no matter how awful they may be. How I deal with that is a different story. I wont fight to prove a point, I merely state my point, and I’m done. Above all, I will never fight to keep anyone, no matter how important, in my life. I only have so much room in my heart, and that’s precious. I caught myself these past two weeks fighting for other people, fighting feelings, and fighting against myself. Never again. Let life happen. Feel Free. I feel pretty alive right now, and I’m not fighting; not one bit.

-haley.

Check out the NEW contest, and our song of the week Gypsy by Fleetwood Mac.