Dont Ask.

Naturally, when you reach a certain age you are asked almost every day if you are “dating”, “seeing anyone”, “talking to anyone”, or god forbid “getting married.” No, no, no, and hell no. And guess what? I’m not available either. I’m not against any of this, and if you are then go you. I will be sure to mail your gold star, but stop asking me. I don’t get offended, I just get tired.

You see, at one point in my life that was my life. Utterly focused on the future, all I saw were children, a wedding, and BOOM that was it. That was all I ever thought about, and not an ounce of effort was put forth past it. Yea…things are slightly different. Not to re-hash old shit, but my world fell apart. I picked up the pieces, got over it, and once my world was somewhat put back together it was no longer the same place. For a long time I searched for who I thought could be a new “love” and all my efforts failed. As I sensed their lying, playing, stupidity, it just aggravated the fact that not only did I feel stupid to be looking, but I wasn’t ready. I’m still not, and I don’t care if I ever am.

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All my friends out there who had a kid, got married, getting married, or have serious loves, then go you. You are doing what you want! I can truly honestly say I’m not pulling a “cat-lady” moment saying that I’m happier single, but truthfully, I am. I don’t want to be criticized for it either. Yea, I check the single box on all my tax, and important documents. That box literally looks no different from the marriage one, except the wording beside it. My cat and I are very happy together y’all.

I’m glad that your marriage makes you feel complete, or your children. I really am! I desperately want my children someday, but I want my vodka, and book first. I may want my kids, but I can honestly say that I really don’t ever know if I actually want a marriage. Sorry that’s a jagged pill to swallow, but its the truth. I don’t crave a romance (unless I’m listening to Nat King Cole, or reading John Green) but hey, its fun to pin wedding crap on Pinterest! Maybe one day I’ll date, maybe marry, maybe not. So no, don’t ask me if I’m dating, or talking, or getting married. That was once my world, and what an awful and lonely world that once was.

-haley.

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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.

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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.

Four Years.

I was only fifteen years old while watching my freshman English teacher scribble inside of a John Lennon book that she decided to give to me while repeating, “Life is what happens while you are busy making other plans.” She said this often, and as fascinated as I was with the quote, I had no grasp of the concept. I mean, doesn’t every fifteen year old know exactly what they are doing with their life? I did. Mrs. Hepler had spent that year critiquing short stories I wrote in private, and we continually bonded over the Beatles, writing, and feminism. She saw something I guess, and felt the need to repeatedly say that quote to me. Its been seven years since I put that book on my shelf, and since I’ve sat in a desk in Mrs. Hepler’s class.

seventeen2Two weeks pre-diagnosis.

You see, my life was all planned out at one point. I was graduated, eighteen, had a fabulous relationship, and even though I was walking into a hospital at five in the morning well aware of what was about to happen…I still thought I was in full control. I remember the nurse having me sign “death papers” in case anything happened. That sting of reality hit hard because I had been eighteen maybe two weeks. I mean, werent my parents supposed to be signing these? I recall the same nurse taking literally eight tries to start my IV, and feeling the frustration of my family standing around telling me their goodbyes before I was wheeled off. But I had to remind myself that this was surgery, I would be asleep soon, and it was all no big deal. The masked female telling me that I had to be awake took another hack into my control theory, and soon I watched it crumble when they injected me, and slowed my breathing. I felt a giant tube squeeze its way through my throat, and watched a cord weave its way into my beating heart on a glowing screen. Doctors chatted around me in professional gibberish that I was too tired to comprehend, and soon I was being yelled at because I was losing consciousness, and bleeding out. Then with blinding lights flipped on, and nothing but silence filling this tiled blue room, I heard my doctor say, “Its your lungs.” My control was shattered.

At first I was told I was physically dying, and then I was just mad. Later, I felt like mentally I was dying, and wanted to actually physically die along with my broken heart, and my life was a collage of unidentifiable direction, misleading information, and trying to fight for control. I’ve been PHighting for a long time. I’ve taken pills, had more tubes shoved into arteries, scans of my organs, and oxygen crammed up my nose. Four years has gone by quick especially when you are told you only have two years left to live. At times I really thought I would rather take my own life, than to continue to fight this tiring disease.

The blue prints in which I thought I had planned my life out perfectly went through the shredder a long time ago. At one point, you just have to sit back and think, “what the hell happened?” But this weird, and unpredictable road has been painful, but as I’ve said before, there is an odd beauty in pain. I saw this John Lennon book collecting dust on my shelf the other day, opened it and read a little message from Mrs. Hepler. I smiled, and soon everything fell exactly into place. I’m still me…but my life really did happen despite my other plans.

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Four years strong.

This is dedicated to Tricia Hepler, who without, I probably would have a ridiculous amount of comma’s on this page. In fact, I bet I still do. What a fantastic person, writer, and general artist you are. Thank you.

-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!

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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

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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!

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-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!

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-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.)

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-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.

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-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.

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-Movie

No comment.

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-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.

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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.

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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!

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-haley.

Instagram @haleyann92

Facebook.com/phenomenalhaley

Freedom; Oxygen of the Soul.

Lately I’ve been catching myself saying, “I can’t do that because…” , “Lord knows what would happen if…” , and blah blah blah. It hit me how much I’m limiting myself because of my dysfunctional lungs. I don’t even try, I just instantly throw on the brakes. Therefore, I’m always on the sidelines, I’m always watching, I’m always wishing that I could do such fun stuff…screw it. I’m doing it. Its JUNE! Its summer! It’s a beautiful time of year to crawl outside of your cave, and look into things you’ve never considered. Am I suggesting a running with the bulls? Of course not. But why, why do we make our priority in life to just survive it?

We really tend to find ourselves existing within the limited walls of our disease. We make excuses, we follow doctors strict orders, we take those pills and endure these side effects, and we are therefore living in a disabled rutt. Sounds messy doesn’t it? Thats because it is. This is part where doctors usually want to strangle me. The whitecoats (doctors) are used to seeing the worst of the worst, and prescribing the up most strictest care. They have to, and I respect it. But they really do forget about the soul on the inside of the defective body. I’m not letting my shell rule my life; end of story. I will take care of my shell so that I may continue to have a life, and I will be careful with my shell, but I will not enter the twilight zone of getting so lost in the care for this disabled shell to keep living only to realize I have no life. Make sense yet?

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I’m getting better at taking my pills. Stay on top of your meds, endure the stupid side effects, and communicate with your doctor.

My oxygen goes where I go, just in case. Yours should be a travel companion too, despite whether you wear it all the time or not.

I plan for the worst, and hope for the best. You should be doing that as well. Think through what you’re doing, and the possible outcomes.

Educate yourself. The more you know about lungs, blood pressures, hearts, medication do’s and dont’s, the absolute better.

Know your body. Truly know what you can and cannot do. I go into over 10,000 elevation every summer because I know I’ll have no issues. What happens if I do? I have all my meds, oxygen, BP&O2 monitors, and I know where the nearest hospital is.

Do what you love. Try everything in small quantities, and don’t push your limits.

There is so much more to life than just surviving it.

-haley.

Find Haley on instagram! @haleyann92

Find Haley’s Facebook page! facebook.com/phenomenalhaley

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