Life With PH

Go Up.

I hate the holidays y’all. I don’t know what it is, but there is just something that changes in the air that makes me inconceivably sad, and moody.

I’m fine with Halloween, and after that it becomes a downhill slide of emotion. I can already feel them coming, and I’m doing my best to push forward. The demons haunting me lately are just the usual that always attack my self-image. My eating habits, and what not have just been so overwhelmingly ridiculous, and I’m tired of trying to fight to be skinny. PH doesn’t leave a lot of room for physical activity, so we have to manage how we eat, which is just fabulous. Anyway, self-image has been eating away at my body for so long, that if it were up to my mind, I would be as skinny if not more than I’ve ever wanted to be. It’s such a downhill drop.

It doesn’t take a lot of thinking to push me over the edge, but lately life has been one big frustration after the other. Dieting, money, school, work, the kids, Rocco’s health, and last night I found myself mentally dangling off a cliff. As y’all know I’ve dealt with self harm for so long now, and it truly takes a lot to pull yourself out of that hole. Most people look at it like we are attention seeking individuals, which is such a judgment. Most people who do it because of themselves hide it. I kept it very hidden for a long time because this is something I was fighting on my own, and didn’t want help. The long sleeves, thick watches, layered bracelets in order to keep it hidden from friends, family, co workers, and students was annoying, and I was at my wit’s end. Last night I ended up in front of my kitchen knifes contemplating. Why people self harm you might ask? It’s merely a distraction of pain. We are feeling emotionally stressed, and strained so we do whatever physical harm to distract ourselves to focus on an easily solvable physical pain. Physical pain requires a sometimes simple, and easy fix. Emotional pain is not as easy, you can’t just put a band-aid on it, or pop a pill. “Thats the thing about pain, it demands to be felt.” -Augustus Waters The Fault in Our Stars. I contemplated for a while last night whether I was going to put yet another scar on my wrist, whether I was going to wear long sleeves the next couple of days, or whether I wanted to ride this downhill roller coaster once again. I called Rocco over, and we walked back to my room, and went to sleep.

You only can make the decision to get off the downhill roller coaster. You may not be where you want to be right now, but maybe in a year you will. Little daily steps have to be put in motion to go UP. I’m tired of being down. We go down much faster, and scarier, and the feeling in our stomachs is sickening. Going up, now that’s progress. You have a clearer view of the world around you, and its a little scary, but exciting. Right? Go up.

fios7The Fault in Our Stars

Isn’t that quote just lovely? An awesome reminder to participate in The Fault in Our Stars contest!! Go look under the contest tab to see how! FRIDAY a winner will be chosen! 🙂 Enjoy our song of the week, Chasing Pirates by Norah Jones.



6 thoughts on “Go Up.”

  1. Hi Haley,

    I love the quote “You are going to live a good and long life filled with great and terrible moments that you cannot even imagine yet.”

    My daughter, Brooke, is 15 and living with PH. She is a high school cheerleader, the older cheerleaders told her about a fan fiction rewrite of Twilight, Edward and Bella’s child has PH. We have not read it but I found it today, the girls said it’s a great book. I know it has a warning about sexual content and profanity.

    Was your blog this week your story or someone else’s? PH is so much to deal with. Hugs and prayers.

    Best wishes, Billie Keith

    Best wishes for you Sent from my iPhone

    1. Billie,
      Thanks for entering the contest!! Best wishes to Brooke, and I’m so happy that she continues to cheerlead and have friends! 🙂 I’m not huge into twilight, but that is very cool. This story was mine! Thank you so much for all the kind words! 🙂

  2. Hi Haley,
    I’m Roshni from Mumbai, India. I’ve been living with PH for years now, was diagnosed at the age of 8-9, now turning 22 next month. Because of the condition, I have always been underweight and am still struggling to gain weight, but given how we can’t do weight training, I have to stick to yoga and eating healthy. Been trying that for a long time and it’s not been easy growing up listening to your classmates and peers say ‘oh you’re such a stick, go eat a sandwich’ or ‘haha, you must shop in the kids section.’ It’s been very difficult, but I know what I’ve been through and I’ve been lucky enough to have friends who understand. All I wanna tell you is don’t give up, keep at it. I’m sure you’ll get to your ideal weight. Just stay positive and keep inspiring people the way you are!

    1. Roshni,
      Thank you so much for reading, and contacting me. Its crazy but so cool that you are all the way in India! Its good to hear the other side of the story, and that even being skinny has its downfalls. I’m sure you’re still beautiful either way. I’m a huge advocate for yoga! I absolutely love it! If you’ve ever done dance, I encourage that too. Most dancers have more muscles than school athletes because we train so hard. However, its like I forget about PH, and I have no idea how severe yours is. Thank you so much for the kind words, and thinking I’m inspiring! You’re awesome, and stay in touch.

  3. Hi Haley,
    I’m Roshni from Mumbai, India. I’ve been living with PH for lots of years now – was diagnosed with it around the age of 9 and am turning 22 next month! I have struggled all my life to gain weight which, trust me, can be very difficult given our health condition. No weight training allowed so all you can stick to is yoga, eating healthy, and sometimes walks. Growing up, I had to listen to things like “You’re a stick, go eat a sandwich,” or “Do you shop in the kids section?” People are ignorant so you can’t expect much, but earlier, especially in my teens, I would really break down. Anyway, I’ve been at it and I still keep trying to get to my ideal weight. What I’ve learned over time, though, is that people will talk and judge you, however you’re only given one body, so love it and be very good to it. Wear whatever you want and ignore what people have to say.
    I’m sure you’ll reach your goal too! Just don’t stop trying and do keep inspiring everyone with your PHenomenal positivity!

  4. Oops, my comment went through twice.

    I found your blog through PH Association, and I’m so glad I did because too many people are ignorant about PH in India; it’s great to find people who understand what I’m going through. I do dance occasionally, but learning it properly is a little difficult, because it can get quite tiring. Still love it and hope I can learn it professionally some day.

    Anyway, hope to keep in touch with you (the internet can be so amazing!)
    Take care!

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