Life With PH

Two Years!

Happy Monday my loves!

I am trying to get inspired, but right now I’m enjoying some quiet time with Rocco Ricardo to reflect on art, read, and edit my book. Whenever I feel the need to write, I will definitely make a post, and try to this week. In the meantime, thank you to all of you who have made this blog possible. Without your support, curiosity, love, and eyeballs to read this text it would be pointless. So thank you again. Song of the Week will be I only Have Eyes for You by the Flamingo’s. Its very much the ending of summer, and all I can think about is that American Graffiti feeling. What a fantastic song to close with. In the meantime…

Processed with VSCOcam with f2 preset

-haley.

 

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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.

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.

PH Health

Heart Healthy Week: Be Your Own Hero.

Happy Heart Healthy week!! The week of “Valentines Day” I post everyday about something that is “heart” healthy. Not literally, like Cheerios, but things that will help your mental and emotional self this week rather than men, women, and “single awareness.” I think we get lost in a sea of red hearts and chocolate, and forget to love ourselves. This is hard for even me to write because this is definitely a challenge. Lets work on it together! Even if you are in a relationship, take this whole week to focus on you, and loving you…then love your person. After all, if you can’t love yourself, can you truly be happy with anything?

Movie Monday

I chose movie instead of music because I already did song of the week, which is Sentimental Reasons by the one and only Nat King Cole. An amazing, and true love classic. For those of us celebrating by ourselves this Valentines Day, I chose a movie with the perfect logo, and cutest story. I don’t need to see a couple fall madly in love, and I don’t need to feel isolated from the “love” world. I do need something that makes me feel like I can love life, others, and myself. Whip It| Be Your Own Hero. This movie has that perfect indie edge, and ridiculously cute story line. I fell in love with the characters immediately (who doesn’t love Ellen Paige), and how this was legitimately about being your own hero, and saving yourself. A great feel good, and laughable movie. Also, it takes place in the greatest state ever. So, relax and turn this flick on to save yourself from any doubts you could possibly be having. Life is beautiful, and so are you.

whipit

-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.

Personal Life

Vlog Venting.

Happy Monday. My life is once again just completely centered on putting out little fires that seem to keep popping up everywhere. This video contains info on T-shirts, my posters, and of course whining about my daily dysfunctional problems. Moving on, Song of The Week is Low Shoulders by Toro Y Moi. Check it out because quite frankly that is keeping me happy right now. You will all know ASAP when the shirts are in! Also, WordPress change the video settings, so I can no longer just insert a video. Click the link below to watch. Thanks!

Vlong Venting: Monday Mishaps

Personal Life

Change Is Good.

meeeeeeeeeSo, there have been many changes this week already! The first one was I dyed my hair. FINALLY. Yes, I enjoyed being blonde, but I wanted something dark for fall, and my hairdresser is amazing! She did the perfect in the middle thing for me (I’m scared to go too dark), and I’m so happy. Also, our song of the week is Wait Up (Remix) by Tokyo Police Club. I recently discovered this band, and I’m so obsessed! Even my students love them. For sure, check them out. Aaaaannd the final, and most exciting change is MY STORE on Etsy!! I’m so excited. I’m not a website guru, or millionaire, and can’t sell my shirts through here. Sooo, if I ever have extra shirts, they will be in my Etsy store. Also, I will have paintings (that’s HOW these shirts come about by the way) that are made to order sometimes, and simple COLORING PAGES for YOUNG PH PATIENTS! Just a way for them to not feel completely down about themselves, and give them a unique way of expressing themselves, despite their differences. So, keep a watchful eye on my Etsy store for art, coloring pages, jewelry, and antiques! You never know what could be posted! The link is below, as well as under the “SHOP” tab at the top. Also, DO NOT FORGET to enter The Fault in Our Stars quote contest! The winner will be chosen October 25th!! Enjoy the changes loves! It’s a good thing sometimes!

http://www.etsy.com/shop/PHenomenalPHinds?ref=search_shop_redirect

-haley.

Life With PH

Be Their Person.

A disease lurking in the background of any type of relationship is always heavy and a very tricky balance. Romantic especially, but do we put any thoughts into our friendships? Do we actually need to groom, re-balance and gain perspective on these type of relationships? Even though its your best friend, well, yes. Because if a disease eats away your organs and life, its likely to get to anything it wants to and it becomes your job to fight it.

person

Since my life has been somewhat a wreck lately, I’ve been watching fictional characters live theirs and I’m much happier. AKA, I’m hooked on Grey’s Anatomy and have finished so many seasons in one week its embarrassing. Yes, its unhealthy but we wont go there. I don’t recommend watching greys if you have a rare disease but they make very valid points sometimes. I have found myself bawling my eyes out over junk, drooling over Patrick Dempsey but I was really interested when Izzy (one of the main characters) was diagnosed with cancer. I watched as her friends had no idea how to handle her, react or what to say. She was admitted into the hospital (where they work) and kept saying that she was fine. So all her friends took those words and tended to their jobs while Izzy sat in her hospital bed, bored, alone and knitting. Eventually chemo caught up leaving her extremely sick and she ended up having to go back into surgery. If anyone knows Doctor Miranda Bailey (LOVE HER) she told the friends what a crappy job they did and tomorrow, do better.

Why am I telling you this? Because there is so much truth in it, its ridiculous. All the time we try to show everyone how strong we are with our disease. That it has our lungs and that’s it! We are fine, we are good, we don’t need anything…except we do. And that’s ok. Stop trying to play strong when you’re going to a very big appointment, surgery or maybe when its a bad breathing day. Communication gets you places and your friends have no idea what you might need or want. They are trying to do anything you say so when you reply with, “I can handle it” then that’s what they hear and move on. You have to speak up. I tell Candice all the time that I will have enough family at a surgery and that I need a friend. Luckily, she was there when the doctor told me I was in heart failure and she got to hear that breakdown, but I’m glad I didn’t have to do that by myself. If you’re the friend and not the patient? We always pretend that we’re ok, but really we are struggling. Whether that’s physically or mentally, we have demons like anybody that can catch up at anytime. You need to be actively present in their life through ANYTHING. That nine o’clock at night run to Starbucks helps in more ways than you can imagine. We’ve already lost what feels like our own body. We can’t even control it anymore and we are living day-to-day hoping we make it through alive. Don’t make us feel like we’ve lost you too. I don’t care if we say we’re fine, no one wants to be alone at the hospital. Would you? No one wants to sit at home by themselves reflecting on how empty their life is. Step in and be there. Our life is hard enough physically, and mentally is a whole other battle. Don’t forget to breathe for yourself.

What I’m trying to get out is, be their person. Thats all anybody really needs is a loving family… and their person. It’s a tough job, can you handle it?

-haley.