Life With PH, PH Fashion

Just Breathe.

Guess who’s sick?!!

Good lordy y’all. Its been a ridiculous roller coaster of illness, and I’m quite ready to be done with it. The sore throat started up today along with the chills and aches. I get strep every year, so I guess my time is up.

Anyways! I hope y’all are getting ready to enjoy your holiday. Maybe I will, we will see. I hope its been a good PH Awareness month as well! You don’t have to move mountains to get people’s attention on this. Simply posting something on FB, telling a friend about the blog or the PH association website will do…Anything!! ๐Ÿ™‚ And if you have, thank you SOO much. My little project this year was t-shirts. On a lazy day in August I decided to paint a pair of lungs which turned out a lot better than I had planned. When figuring out what to put on the shirts this was of course a must. With over 50 orders, everything was processed and I got them in yesterday! I am so excited to see MY PAINTING on a shirt that so many people are wearing. Its super exciting.

This has been a very exhausting month, and we’ve scheduled a heart cath in January to see if I’m still reacting to treatment. I think people underestimate our exhaustion. We appear fine, and that’s the worst thing about PH. You look completely normal and for the most part I try to act it. But in reality I have to keep myself in check, realizing what I can and cannot do. Naps are necessary , and I should probably work on getting more sleep at night. But all in all, just know that with PH it’s the inside that really does count. We are sick people, it’s just not as obvious. This disease is tiring physically as well as mentally for sure. Accepting, learning, treatment…It all gets very old. Thank you so much for keeping up with the blog as well as taking time to learn about the disease itself!! Happy Thanksgiving y’all!! ๐Ÿ™‚


Life With PH, PH Fashion

A Zebra Among Horses

Finally, I am back. And un-sick.

I thought I would share a little excitement over this PH campaign about zebra. At first I was like, “Why in the heck is Zebra all over their page?” After reading their back story on it, it made sense. Doctors are taught to think in a way “If you hear hoof beats, think horses not Zebras.” (Season 1 of Grey’s Anatomy this is actually said by doctor Shepard) This meaning, if someone walks in saying they cant breathe, just think its asthma and walk away. Associate common symptoms with common problems, don’t look for the rare disease. This just pisses me right off. PH IS the zebra of the medical field that they keep missing. My junior year of high school, I had just gotten to my English class and fell down coming in which was strange, but I just thought I had tripped. After the humiliation I sat down in my desk and remember feeling this horrible pain in my chest and dizziness. My friend Daniel in front of me kept asking “Are you ok, Haley?” While I answered, “Just give me a minute.” I thought my eyes were closed but apparently they were open while I was saying this, which means everything in my body was starting to shut down. And that’s the last thing I remember. I woke up feeling super relaxed and sleepy. Fulling gaining my vision and hearing back, I realized I was on the floor of my classroom with my teacher slapping my face, one of the assistant principles with a wheelchair and of course the laughing/starring “peers.” They got me out of the classroom, upstairs and into the main office for me to be picked up. One of my dads co-workers drove me to the hospital and I met my dad in the ER. We immediately were admitted to a lovely curtain room where they ran blood work and of course did MULTIPLE pregnancy tests. They came back negative (of course) and after that they had nothing to say. I love that because I was a 16-year-old girl who passed out, that they only thing on their mind was pregnancy. No EKG was performed which would’ve been a DEAD giveaway that my heart was not functioning right. Its moments like that that infuriate me because doctors are told to think this way. Why push it further? Why spend more money on testing? Psh, why believe the patient? I think doctors should have a new way of looking at things, TO SAVE LIVES.
ANYWAYS, PH is so misdiagnosed and undetected not just because of doctors but it takes a while for it to take effect on your body. I was diagnosed at 18 and told I wouldn’t live another two years. For seven years I complained, whined, “walked it off”, struggled, gasped and puffed on pointless inhalers. PH is a very invisible disease in a basic disguise. It IS the zebra among horses.

So WOO-HOO! Here is another Nail Tutorial with Zebra and of course, lungs! ๐Ÿ™‚ Start out with 3 coats of Essie’s “She’s Picture Perfect” but skipping the ring finger and painting it white. After letting it dry for about 10 minutes, take your Kiss black striper and stripe your ring finger into zebra. It’s really just a bunch of random lines! After that you will apply your lungs (using your Kiss white striper and Kiss glitter striper), then of course some Sally Hanson “Instadry” topcoat! ๐Ÿ™‚ I would love to thank my best friend Candice, for letting me PH her nails. ๐Ÿ™‚



PH Health

No “Decongesting” Anytime Soon

So this is pretty much exactly how I feel right now. I can’t breathe through my nose, which at the moment is acting like a fountain that only lotion Kleenex can stop. My right eye wont stop watering, and now I can’t hear out of my left ear because I blew my nose too hard. Yes, I am absolutely pathetic.

For many people its simple. Load up and go to the store to find your favorite cold medicine and be done with it. When you have Pulmonary Hypertension? No no no. You’ll be kickin’ it in bed all day with the Kleenex box, Tylenol, orange juice, soup and The Cosby Show. (Cause its simple one of the best shows ever.) Basically, you’re going back the basics of no decongestants or cold medicine AT ALL because you have heart problems, which doesn’t mix with those ingredients. The ingredient Pseudoephedrine causes some people’s heart to work harder and faster, and mine works hard enough. I knew I couldn’t take a lot of stuff, but in a desperate attempt to get rid of all this stuffed up mess I went to walmart and had this perfect liquid crap picked up until my dad said “That’s one the things you can’t have.” Which turned into the whole damn isle. So what do I do? Grab the Kleenex box and leave. OH MY LORD. Fighting a cold the old fashion way is just not fun. I feel like the pressure in my nose is going to explode, and now I can only hear my Michael Jackson CD through one ear. I am full to the brim on annoyances.

So beware PH people (or anyone with heart problems for that matter), don’t get a cold. And if you do, bury yourself in Michael Jackson music, soup, coffee and of course good old fashion TV. ๐Ÿ˜‰


PH Fashion

PH Awareness Nails (One of three to come)

PH Awareness Month is here so I plan on doing a TON of things to get people’s attention, and YOU should too. ๐Ÿ™‚ I will definitely be sharing.

Of course the first thing I attempt is nails, because it’s just so fun! You should definitely be trying these beauties too since they are wayyy simple. Practice drawing an awareness ribbon before you try it on your nail. Be sure to give plenty of time for your purple polish to dry before you try it on your ring finger. After completing the ribbon add some optional little sparklies around it. Don’t forget top coat!! ๐Ÿ™‚ *I will be buying a purple (periwinkle) striper so I can have an actual colored ribbon on my finger! Zebra and lungs are next!! Stay tuned!! ๐Ÿ™‚

Life With PH

Become A PHighter

PH Awareness Month is here!! You should definitely get excited and show some support. It’s amazing to see SO MUCH support for other diseases, so this isn’t impossible. Post it on the blog, your FB…DO SOMETHING. I suffered a long time not knowing what I had and neither did ALOT of doctors! I could’ve died all those years from each episode and was given 2 years to live at 18 years old, right after I graduated high school. People are suffering silently everyday from this invisible disease, so let’s make Pulmonary Hypertension VISIBLE!!

I hope yรกll have had a lovely Halloween (I loved it) and keep in touch with different discussions about this as well as awareness ideas. It’s THE month to become a PHighter!! ๐Ÿ™‚