Personal Life

Ch-Ch-Ch- Ch-Changes.

I’ve pretty much diagnosed myself with the worst case of writers block ever. I’m not feeling inspiration, a drive, or anything else currently but to instead focus on my book. I really don’t want my blog to suffer (it’s what propelled me into writing) so I am attempting to keep my head above water with all of this. With that being said, some serious changes are coming to the blog.

It’s not just about PH anymore. This topic is what started the blog on issues that everyone overlooks with a disease, from fashion to tattoo’s, doctor appointments, and what not, but now its evolved. As I continue through my daily life, I realize how much more I would like to write about other things. Education, my heritage, other issues that need the spotlight of activism, and even little things like my room and pill bottle organization. YES! It will be synergy between my serious writing, and thoughts, to little daily things that help us progress. I think that, overall, is what I need and what people will enjoy more. I hope these changes are more enjoyable to my readers, and also help me find my inspiration a little better. 😉

yourstory

With that being said, now we can focus on the book. YES! A Haley Ann book is in the making. However, it’s a young adult fiction book. I will start releasing certain quotes on posts WITH a poll, and you can vote (anonymously) if you liked it! While talking with Colleen Brunetti a couple of weeks ago who is in the process of writing her own book, and it’s already successful, I told her whats stopping me is talking about the book itself. I really don’t want to hype up the book if it’s not worth hyping up, which is why I need your help. You get to be the editor, and audience. So please take time to read, and vote!

Now to wrap up everything, song of the week is The Rain Song by Led Zeppelin because I needed a little classic rock to remind me of song good times with family. What a beautiful piece. I hope you continue to have a lovely week! The next post? Haley’s Room. Prepare thyself.

-haley.

Advertisements
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.

Life With PH, Personal Life, PH Health

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.

Processed with VSCOcam with b5 preset

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.

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

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

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.