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

Advertisements
Personal Life

Its Been a Minute.

Sorry it’s been a little bit y’all. I have so much writing I want to do right now, and I’m currently cleaning up my novel in order to submit it for a contest, and also I have another heavy subject on my heart that I need to write about. Until then, there is a NEW CONTEST that ends two weeks from today. Submit a pic of your PH Pet(s) that get you through these insane times. I have no idea what I would do without my Rocco, even though we both have crap lungs. Send me your pic, and a random person will win a Just Breath Tee! Remember, whoever wins this contest will have their shirt shipped March 28th. Winner will be chosen March 12th. Send your pic to haley.ann.92@gmail.com! Also, we will post pictures with your permission. 🙂

Processed with VSCOcam with c1 preset

 

Novel? Yes, Novel. I’ve been busting myself on a work of fiction that is heavily based on my life. I drew from personal experiences, but yes, its fiction. Anyways, a lot of people are requesting to see it because Pulmonary Hypertension is the big star in the book. However, I’m just not quite ready for that yet. Previews are always nice though, right? So here’s a little sneak peek below. If you copy my words, please give credit and quote me. If you STEAL, I will find you with my fancy Texas lawyer. Give some feedback, and let me know what you think loves.

This is a scene where the main character is having an echocardiogram done.

“It wasn’t a child, it wasn’t kicking its way out of my body, and people didn’t crowd around asking if I was excited. But it was my heart, it wasn’t shitty, and it wasn’t broken. Beating vigorously, I watched it trying. I couldn’t help but stare in amazement that this unbelievable organ was locked up inside my chest, and how wrong I was in my attempts to stop its wonder.”  -Haley Ann

Life With PH

Throwback Thursday.

So in the spirit of Thursday, I thought I would participate in a little throwback.

20140220-133454.jpg

This picture. It was taken in possibly November 2010, when treatment was unsuccessful, I had just spent an entire week in Houston trying to find a treatment, and I was having to wear oxygen. I was pale, I was cold, and yes I have tubes in my nose. As you can also see, I’m in my own home because I wouldn’t have been caught dead out in public wearing oxygen. Why? Because for so long oxygen tubes have been nothing but a symbol for the sick, diseased and elderly. It’s not attractive, and most of the time people stare. So why mess with it?
I love that my point of view has changed dramatically, and it’s going to be funny to see if America’s does too after June. What I love about John Green is that he gives you raw information and makes it beautiful. He puts ugly truth into a paragraph, and it’s amazing. He put a girl wearing oxygen twenty four seven into his book, and made America fall in love with it. Pretty soon, that same girl (Hazel Grace) will be on the big screen and no one will be able to hide their eyes from seeing the cannula crammed up her nose. No one. He made oxygen, this ridiculous annoyance, beautiful.
I think it’s sad that patients like myself, and most teens compromise their health in order to appear normal, and don’t in fact want to wear their oxygen. It shouldn’t even matter anymore. Loves, you were never normal! Don’t throw away and damage your body even further to attempt at existing in a normality that was never even there in the first place! You were always PHenomenal. Wear your oxygen, proudly.
DONT FORGET! This is the LAST DAY to go like the Facebook page to possibly win a just breathe t-shirt!! Check out the contest tab for more info. facebook.com/phenomenalhaley

-haley.

Life With PH

Monday Funday! Yea, Right.

Got a case of the sucky Mondays? A contest can fix that! Finally! We are pretty much caught up on ALL of our shipping (and sending out goodie packs), so the contest shall commence! Yes, we got behind in the past on shipping because of trying to keep up with all the shipping when it came to the T-shirt mishaps AND contests. However, the new rule for contest winners! ALL WINNING PACKAGES ARE NOW SHIPPED THE 28th OF EACH MONTH. Whenever you win, it’ll be shipped the 28th, no matter WHEN you win. That is the official shipping day to keep us on track, and to keep our winners happy! Moving forward…

contest

To kick off our first contest in 2014, it’s a super easy one. All you have to do is find the official Facebook page (Facebook.com/phenomenalhaley) and like it! Everyone who likes the Facebook page will be put in the system, and one random person will win a Just Breathe T-shirt! So head on over, and like the page! It’s as simple as that. The Facebook page keeps you updated on my life, contests, upcoming events, blah blah blahhhh. Sometimes its just easier to pop on Facebook and update that quickly! So please find us to stay further in tune with whats going on on the blog! Y’all are awesome, so participate. 😉 Have a lovely week y’all! Its only the beginning!

-haley.

Life With PH, Personal Life

Emotions Are High.

Finally, Rocco is asleep and I’m done crying. I honestly do not know how you caregivers do it sometimes, and I reached my breaking point today.

Processed with VSCOcam with p5 preset

The meaning of Caregiver to us patients has always been who’s provided for us from the beginning. Who comes with us to appointments, drives us home after surgeries, and who is at our side when this disease shows its ugly side through our challenging bodies. I never thought much about how my Dad has felt towards me, and after being a caregiver to Rocco Ricardo through a very rough almost six months, I’m losing it. Rocco came to me shortly after being diagnosed, and was in a way a caregiver to me. He was the consistent lovable force through very ugly times, and looked to me as his “mom” for just as much love and support as he was showing me. From day one he has always been my baby, and this is truly one of those cases where he, in turn, rescued me. When his episodes started happening I really hoped for a change. I’ve prayed, shoved pills down his throat, liquids, diet changes, and we see his doctor more than I see mine in a year. I really felt that miraculously he would improve, and that the good phases he goes through would get longer, and eventually his episodes would just stop. After all, he is only three years old? Why is my eighteen year old cat still climbing his bony self up tree’s and my three-year old is in the house sleeping all day? It’s not fair. Not at all. Rocco’s bad month has extended into almost six months. His doctor said that his lungs are looking worse, he sounds worse, and dad and I are taking different shifts when it comes to administering treatments to keep him breathing. I cried today because I’m exhausted. Hooking tubes up, paying for medical bills that don’t seem to help, keeping him somewhat breathing, distracting him, and keeping him happy. I am so damn tired, yet I will still do all of these things even at four in the morning just to see Rocco somewhat breathing good (the best he ever will), sitting upright, walking around, and attempting to be happy maybe one hour a day. Last Friday I watched him aspirate a liquid medication that was supposed to help, and he almost left us. After an hour of treatments and hooking up my oxygen to blow in his face, he finally was breathing in big chunks of air. Today he coughed his lungs up, and treatment after treatment he put his head down, and tried to hide from me while I caught myself yelling at dad asking why he is acting weird, and to figure it out. I watched myself finally realize how terrified I am of death, and that my three-year old is definitely not far from this black hole. I realized that I have never been so scared for him, and that I am losing one of my caregivers. He was there for me when I was on bedrest, experimenting with treatments, and when I cried my eyes out into his black fur through a breakup. Now Its my job to make him as comfortable as possible, and to be his caregiver. I’m exhausted, I’m upset, and I don’t know  how the parents of any kid with a disease can do this. I cried today because I am so questionable of death, and am scared to see him in his last moments not acting as himself. Kuddo’s to you caregivers, and what you do for ANYONE, child or adult, that needs assistance. There are not enough words to describe the unknowing and numbing pain you experience as a caregiver, that you were not originally warned of. Thats all I have to say about that.

-haley.

Life With PH, Personal Life

Float On.

Whew, hello week. Have I mentioned how frustrated I’ve been lately, and how I don’t even know what I’m frustrated at? No, it’s not the Superbowl. I hope everyone had a great time because all I was concerned about was the halftime show. Which by the way was beyond fantastic.

Moving on, while talking with friends on Friday (well more like screaming at each other through a cloud of smoke over Bohemian Rhapsody) I explained that I was “floating” through life, and having fun at that. Floating, its such a relaxing little word. There is absolutely no weight to it, and within the eight letters harbors an easy definition. Never have I been so relaxed and satisfied with an answer that I’ve given before, and I didn’t give much thought to it…till now. Everyday I stare into the hopeful eyes of young kids. Their hope somewhat radiates throughout the school, and rattles my bones. They give me a maddening peace, and make me love them even more everyday. I can’t imagine not having one of these crazed, mess creating machines eventually, and the thought of coming down off this cloud to obtain that seems unbearable, yet peaceful. Am I making sense yet? Here I was my whole life thinking that I only belonged firm on the ground, and my mind was completely shut off to any other options. I didn’t care what fun was, or meant, I just wanted to keep walking, and keep focusing. After a while I found myself mentally exhausted, my feet hurt, and I had no idea why I felt so dreadful. And then I realized, this wasn’t the future, and I need to stop trying to make this my future. It’s the present, and I’m lucky enough to have it as it is. It was time to kick off my shoes, relax, and enjoy.

float

Overall, life is just ridiculous, and at times can be lonely but I don’t care. I’ll know when to come off my cloud, when I’m ready to face the crowd again, but life is just fun for now. You don’t necessarily have to be young, or single to float, but what are you doing exactly? Are you traveling so fast, and so furious, and if so, what for? Just stop, don’t become irresponsible, but enjoy. Float in the moment, savor the moment, and stop pushing life to happen. Stop forcing everything, and stop exhausting yourself to make all the right pieces fit. Relax loves, after all, “Life is what happens while you’re busy making other plans.”

Check out the song for the week, Float On by Modest Mouse, a perfect song to jump around and scream to in your room. Appropriate, huh?

-haley.

Personal Life

Oh, Happy Day!

Oh my goodness loves. I am sick, for the first time this year. I really just want to sit at home, and write, but having two jobs doesn’t permit that. Ugh…moving on.

Happy Monday I guess! I’ve never really thought about Martin Luther King Jr. Day even though what he did was beyond amazing. It has always just been one of those days where we got off from school, and I had no idea until half way through it that we were celebrating him. I sound awful I know, but its the truth. I was raised into believing that absolutely no one is different from you, despite their appearance. As a result, I had a wide variety of friends that were different races and what not, and I never thought once about it. I still have a wide variety of friends, and now I even work with kids in which most of them are not white. Being raised with that outlook has made me ten times stronger in associating a bond with them, because I love learning about their cultures, and them in general. I couldn’t imagine living in a time period when that would’ve been shamed. Well, I guess I can.

mlk3Wow, just absolutely wow.

 

Back to the main point. Like I said, Martin Luther King Jr Day just happened to slip by until I saw a post this morning that woke me up. A friend of mine who had extreme trouble getting pregnant (happened to be blessed with her first boy), but could not get pregnant again decided to adopt. She ended up with a beautiful baby girl who just happens to be half black (I think), and she is the cutest thing ever. She is absolutely wonderful, and this multiracial family is just fantastic. With Pulmonary Hypertension, I too one day might be looking at adoption. I too might have a multiracial family, and I will in fact be proud of that. I absolutely love the kids I work with everyday who are different races. No, they are not mine, and if I can love them that much I think I am suited for adoption. Bottom line, I just wanted to say how thankful I am for MLK Jr. because I get to work with these amazing kids. I get to actually talk to them, and love on them, and it’s not a crime. Also, my family one day just might be complete. I am so incredibly thankful.

Also, just a little fun fact. The cover photo on this blog (and where even more pictures were shot in a Fashion Post) just happens to be at an abandoned school in my hometown. This school was shut down in 1972 because it was a predominately “Black” school, and finally integration started to take place making this educational facility not needed anymore I guess. I absolutely love it, it’s a wonderful part of hometown history, its creepy, and it made for an awesome photo shoot. Enjoy the song of the week, Dearest by Buddy Holly. Happy MLK Jr. Day y’all!

stephanieMy friend, Stephanie, in front of Summit. Beautiful building. You can check out my photo shoot pictures around Summit in “Fat Ankle Fashion: Boot Season!”

-haley.

PH Fashion

Fashion Friday: Feel Good.

Oh, finally. I have not forgotten, in fact this is a daily subject in my life. Also, a passionate subject. FASHION FRIDAY!!!!

So, usually I’m giving tips on how to cover up some medical PH mishaps (fat ankles, red blotching, tubes, oxygen, cold) due to medication that we take, but lets not forget about the MENTAL side to our disease. We can cover our bodies however we need to, but we also need clothes to make us feel good. When I think about amazing fashion that makes us feel good only one person immediately comes to mind. betseyBETSEY JOHNSON.

Of course its Betsey. Of course. If you have no clue who I’m talking about, lets sum it up to the queen of pink, fun, and staying true to yourself. Betsey is a designer that started in the 60’s (Alley Cat by Betsey). She had a great, and extravagant taste that didn’t stop her! She stayed true to her crazy fun self, and pushed through. Now she’s an extremely successful and well-known designer. She’s famous for doing a cart-wheel at the end of her runway shows, and these aren’t the boring runway shows either. The models are laughing, playing around, blowing kisses, and all of this is encouraged by Betsey. Her clothes, shoes, perfumes, sunglasses, socks, purses, and even cards and stationary sets are a hit! You can find her at Macy’s, Dillards, Nordstrom, and Michael’s for your cards and pens! She’s fabulous.

betseycollage

Moving on, her personality is just contagious. Never has she once acted like she cared which is so refreshing. She’s truthful to the core, and everyone needs a “Betsey” in their life. In fact, the world needs a whole lot more of Betsey! Many times I’ve used her leopard fuzzy socks to wear into surgery because not only are they warm, but fabulous. So, if you are looking to add a little spice to your life in fashion, or anything of the sort, think Betsey! Just looking at her products will make anyone smile. Fashion Icon at its finest. Thank you Betsey for being you! Happy Friday Loves. Take care of every part of you!

Processed with VSCOcam with x1 presetRocking my new Betsey Blues.

photo(125)Betsey “Raven” Sunglasses right before my first specialist appointment.

photo(124)Betsey shirt!

-haley.

Want to see more of Haley’s daily life, and fashion? Follow her on Instagram! @haleyann92

Personal Life

I’m Not Sorry.

I get tattoos. I love showing what inspires me, and what has heavily influenced me even on my body.
I love art because things that are created come from within, and are so beautiful they can’t be described correctly.
I love black cats, especially Rocco. I don’t think they’re bad luck, I think they’re just as beautiful as any other cat if not more. I don’t believe in animal, or human discrimination.
I quit school. Not necessarily because I hate it, but I already have medical bill collectors harassing my phones, and I don’t need anymore debt.
I believe in loud lipstick. Life is short, wear the hot pink lips.
I like vodka. After you apply the lipstick, have some fun, responsibly of course.
I love giant high heels. Life’s short, doesn’t mean your legs have to be.
I love 50’s early 60’s music. It’s incredibly fun to dance to, especially when you’re making breakfast.
I start every morning by watching I Dream of Jeannie. I think the light-hearted comedy is perfect to wake up to, and that doesn’t make me weird.
I’m either utterly obsessed with something, or not interested at all. That does in fact make me weird.
I believe in being realistic, and then God will take over when he needs to. I believe children deserve the absolute best.
I guess I’m really passionate about conserving the past, history, art, and the way things were done. I love history. I believe that if anything sparks my interest to become completely, and utterly educated on it. I love meeting new people, and talking to complete strangers. The weirdest people can be the coolest, and friendliest people. I believe that in a way I was born to raise hell, and get people’s attention. I’ve never been one to follow rules, conform, or stay quiet. It can be unfortunate sometimes, but it’s my life. These things are me, and honestly I’m just tired of apologizing for who I am. I am not sorry, not anymore.

_MG_8326-2

Briley Dockery Photography

-haley.

Life With PH

I’m Still Surviving.

I’ve become one of those people who follows “survivor” accounts, quotes, and what not to stay updated on all that cool lingo. However, with Pulmonary Hypertension, we are on life-sustaining treatment which I guess in a way means we are constantly surviving. I have trouble calling myself a “survivor” because I’m not quite done yet.

photo(122)

It may seem like a negative outlook to many, but a lot of us still have this same view whether we realize it or not. PH is still barely caught in the doctor’s office being its usual invisible self. Even after diagnosis, there is still no cure available. Treatment is built around the idea of making it to the end of the day, and not falling apart. People love to say that “we are survivors” yet I really want to say “of today. We WILL be survivors.” Now that sounds better. I’m totally guilty of the survivor talk too though. It’s not a bad thing at all, but it’s highly unfortunate, and can be changed.

Lets rewind for a minute. Someone asked me someday how long I’ll blog until I completely focus on school (which I finally quit.) Three years ago, I would’ve buried my head in my schooling, and opted for the more stable job. However, I’ve began to step back, and analyze things more closely. This blog is my life, and what I want to DO with my life. My writing, my goals, and my PH community are what keep me going, and I’m not stopping. I’m aiming for lights. And overall, this all ties back into calling ourselves Survivors. If it wasn’t for not having a cure, for suffering through treatment, and mental trials, I would have nothing to write about. This keeps me going so one day we can call ourselves Survivors rather than Surviving. All of this will get out there one day, spark interests, get attention, get people thinking, money donated, and hopefully curing Pulmonary Hypertension. We will Survive, and we will be a Survivor one day saying that we went through our time “surviving” with a treatment, and became a Survivor with a cure. The catch? I need your help getting there. You know what to do y’all. I’m glad y’all are my community of supporters. You are the absolute best.
Check out the song this week, I.G.Y by Steely Dan. “What a beautiful world it will be, What a glorious time to be free.” Check it out y’all.
-haley.