Heavy, Dull, Tight or Full

Hello loves.

Its been forever…well, a whole week. But here is kind of whats going on that’s keeping me from updating yáll.

-I’m working full-time at the school (and pulling 12 hour shifts to get things done).

-I’m a full-time student.

-I do photography.

I seriously feel like I don’t even have time to breathe, and that in itself is starting to reflect with my body. Like I’ve said before, I’m a GO GO GO type person and with my hectic schedule I’m getting maybe 5-6 hours of sleep a night. Plus, I’m a night owl (insomniac.) So I’m totally never resting, I’m working a ton, on the weekends I’m finishing school assignments and doing photography sessions. Well, for about 3 days now I’ve been having some chest pain. I think its due to not having adequate rest and just time to relax. So I’ve gone through an oxygen tank this week and I’m about to put another on. We’ll see how the rest of this weekend goes, then I might be calling my doctor on Monday.

Sooo Chest Pain, PH’s best friend. It comes and goes and every time you go to an appointment they ask about it. Some doctors are concerned, others aren’t. It’s a very common thing that can have a lot of different causes, but could always have the possibility of being something serious. But when do you know to pick up the phone? After much research and actual experience, I know when it’s not just the day-to-day “simple” chest pain we get. When its heavy, dull, tight or full its time to get the doctor on the phone. It’s almost related to Angina, which is a slight delay in the blood flow to the heart. And beware, this can be brought on by anything! Smoking, exercise, emotional stress, cold air, certain foods. Keep a close eye on your pain. You’re the only person who knows what they are feeling. Don’t suffer silently.

I love blogging and I’ll try to make more time. My brother reminded me tonight “You’re just like everybody else except this one big thing.” So to all my PH’ers out there, SLOW DOWN. Cause it’s kicking my butt so far.

On a happier note, I had time for shopping today and im enjoying my skinny ankles. I hope they are here to stay!!! 🙂

Skull top from TJ Maxx, Black Skinnies from Dillards, Red flats from Charlotte Russe

-haley.

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Purple And Scarves And Fall, OH MY!

Fashion Friday!!

Yea, I totally missed last Friday but I remembered today! Go me. Tomorrow marks the first day of fall!! This is for sure my favorite season, it comes with some mixed emotions this year (due to singleness hahahaha) but I will always love fall. The clothing, colors, cold and PUMPKIN EVERYTHING! I think we can all agree that one of our favorite fall accessories are scarves. And with this trendy thing we can still show our support for this disease.

Pulmonary Hypertension’s awareness color is a lilac purple. I’m not a huge fan, but I’ve adjusted to it well! I randomly came across a website called scarves.net
You should totally check it out because they have every scarf imaginable! So of course I found this cute lil’ old lilac thing. I love that it’s not completely plain purple (boring) its got a cute pattern and the scarf itself curls. How cute! The best part?! PH awareness month is in NOVEMBER! You can wear this to keep yourself warm AND show some support! Best idea ever.

“Carlie Paisley Ruffle Scarf” Available at scarves.net

It was a short fashion friday, but I think yáll got the point. Happy Fall my loves! Go enjoy a Pumpkin Spiced Latte. 😉

-haley.

My Baby

Sorry I’ve been away for a bit! Working full-time while being a student has its moments and I barely have the energy to put this together. I wanted to finally post about my baby, Rocco, since I’ve had a very emotional week with him and really, I just need to vent it out.

You’re totally saying to yourself, “Why does she need to vent about her cat?” Lets backup. I adopted Rocco when he was 6 weeks old and too young to be away from his mom. He had fleas because he had been kept in a backyard (which contributed to his problem now, unfortunately) so I immediately had to take care of him 24/7 to get rid of them. He was too young for treatment so I washed him twice a day with dawn dish washing soap and combed him. Then about every other hour I would bottle feed him, take him to the cat box, play with him then he would finally crash. I was on bed rest from PH so I had time for all of this! On top of taking care of this cat/child, I cleaned like crazy and kept him in one room to prevent him from sprinkling fleas everywhere. I got about 2-3 hours of sleep a day. When he slept, I slept. I guess taking care of him like a child, he definitely became my baby and I quickly became momma.

Fast forward to today, Rocco just turned two years old on August 24th. I didn’t think we would make it though. Rocco started these weird coughing episodes that honestly sounded like hairball’s in December. I didn’t think anything of it until it became about February and they were still happening. After googling it, I suspected Asthma and took him to the vet. She said it sounded like it as well and gave him a steroid shot. We thought everything was great…until he was back to it a week later! I took him back in July with these on and off episodes and the second vet said the same, except we tried steroid pills. Once again, he didn’t react. So we went back in August and spoke to the third doctor in the building. At this point I was definitely expecting something cardiac. After listening to all my doctors and knowledge about pills, I’m not stupid and I know how to communicate with doctors. This doctor decided to run a chest x-ray and blood work. We got the results and I absolutely lost it. Rocco has an enlarged heart and fluid in his lungs which ultimately means heart failure.

I CAN NOT COMPREHEND how my baby who wasn’t even 2, is in heart failure. On top of all this, before I got diagnosed every doctor I visited said it was asthma and never checked me for anything more – and this was done to Rocco. I should’ve known better and still blame myself. So right now all we can do is give him lasic to get the fluid out of lungs (we’re on the same one!!) and put him on a broncho dilator to help the breathing. It’s awful to see him gasp.

The worst part about this is watching his personality change due to the heart failure taking its toll. He sits on one spot, doesn’t walk around much…he just isn’t Rocco. The irony also kills me but somewhat helps. I know what it takes to take care of him, so I know God put him in my hands for a reason. It’s just very depressing to know there is no help for him other than comfort. I love my baby and this is the hardest thing lately, and I guess I somewhat understand what my parents think about my diagnosis, and me being so young. I just had to tell my cats story, because he is PHighting too. I Love my Rocco, show him some love too!!

-haley.

Obsessions

So this post doesn’t have much to do with PH. But yáll can live with that right? Good. 🙂

I just wanted to share the latest things I’m in love with, well because I feel like it. This is just an arrangement of things that mean a lot to me and that I like to talk about (obviously) and maybe you can check them out as well. Here weee goooo.

BLACK CATS

This will ALWAYS be an obsession. I had my first black cat when I was 8 years old. She was crazy, smart, talkative and still is her sweet self today at 11 years old. I love my little Fantasia – shes beautiful! With having her, I knew I wanted more! I just love the panther look and 2 years ago I was determined to make another mine, and I did. 🙂 I brought little Rocco home at 6 weeks home, and had to bottle feed him. I was on bed rest for PH and he was perfect company and someone to take care of. As a result, we both are super close. I’m going to have to do a complete separate post about my Rocco and the ironic challenges we are going through with him. But anyone who knows me well and has been in my room, there is black cat stuff everywhere. They’re beautiful, simple and sweet. And will be my next tattoo. Isn’t Rocco handsome?! 🙂

MICHAEL JACKSON

I will always defend him, and even with all of the strange things that consumed his life he was an amazing artist, dancer and person. And not to mention extremely sexy until about 1990. Oh I love Michael, just like the rest of the world! “Dancing isn’t about thinking, it’s about feeling.” Oh and look at that, Michael with a black cat…perfect!!

BUTTER LONDON TROUT POUT

I am a nail polish freak. And it seems like the rest of the world is getting there too! I paint my nails about twice a week, and almost immediately if they chip. So I have a little collection of colors growing in my room and so far my absolute favorite that I got on sale this week would be Butter London’s Trout Pout. It’s such a cute pink, however these polish’s are normally $14 a piece. I got a buy one get one free sale this week at Ulta. Be prepared to pay big bucks with no sale. But anyways, I love this color.

JANIS JOPLIN

I’ve loved this bluesy girl for a long time, but just recently I was curious enough to watch an interview she did back in 1970 and fell in love with her even more! Her personality was so true blue, honest and she was extremely smart. Her life ended such a sad way and she didn’t have much to be happy about, but she was extremely talented. Check her out, if you weren’t already a fan. Woo-hoo, proud to be a Texas girl with Janis.

GOODWILL

It sounds ridiculous, and I just don’t care. I grew up thrifting, and still do. I’m not saying I live in a thrift store and don’t come home with bags of questionable stuff (ewww). But really I hunt for vintage finds and have run across some amazing stuff so far!! LOVE it.

PUMPKIN SPICE

Who isn’t obsessed with these?! Other than the millions of calories and sugars you consume within 20 minutes and the 10 pounds you’ll put on instantly, these things are fall heaven. Seriously, if I’ve been good (I make a lot of exceptions) then I’ll treat myself to one. Join the club if you haven’t already.

BETSEY JOHNSON

Another thing that will always be on the obsession list. I love her, her clothing, stores, personality…just everything.

SCHOOL SUPPLIES

I’m a teacher, and I hoard little things because I’m trying to plan for the big picture someday (my classroom). I get ridiculously excited with cute class decor, erasers, new crayons, coloring pages, stamps ANYTHING! I love it all! I have to pry myself away from Walmart and Target most of the time cause they have such cute stuff. Oh school…my happy place!!

MARVIN GAYE

I’ve been loving his music the past week! It fit my very chill mood and has even fit our cloudy weather the past couple of days. Sad life he lived as well, but once again, such talent.

Random much? Yes, but I hope you enjoyed it anyways.

-haley.

Bye Bye Benjamin.

I’m totally about to write out of anger, and yáll are just going to have to deal with it.

College just sucks. Some courses are entertaining and I’m glad I took them (my education classes) and others are ridiculously annoying. But when it’s all said and done, if you want that fancy piece of paper you must have it all done and last but definitely not least, paid for. And this is what brings me to such pure insane anger. I’m about to sound like a total ass, and sorry ’bout ya’ if you get offended. I see scholarships EVERYWHERE for all kinds of ridiculous things, yet after many many hours of sitting on a computer I have yet to find one for PH or a young college student with a lung disease in general. I’m not saying pity me, but if we are offering a scholarship to someone who’s left-handed, I call BS. Maybe I’m not looking in the right places (and direct me if you know where to look) but I’m just getting hacked yáll. I have a 4.0 GPA as well and I’m working full-time! It’s definitely been hard to meet college payments on my own cause lets face it, shit happens…for instance, a speeding ticket. 🙂 I want my degree so awfully bad and this semester was the first time I’ve ever taken out a loan cause I just cant do it anymore. I see so many students doing the same thing. I know it’s a never ended debate and discussion, but seriously I think something should be done about it.

Not only is it hard for a “normal” person to complete college, but when your body doesn’t quite keep up like everyone elses, it can definitely seem impossible. (See my post “Slow and Steady Wins the Race”). I think financial stress can also just cause a crazy chain reaction with what goes on in your body. I don’t want to be pitied, at all. I’m just sayin’, if Suzy Snowflake gets granted a scholarship for having green eyes, I’m kinda going to want to lunge across the table and strangle her. If you are having issues like this too, I feel for you, BIG time. I work hard to keep up as well as keeping my grades up, so every once in a while it would be nice to see my total come to zero. END OF STORY.

-haley.

 

Fat Ankle Fashion: Round Two

Fashion Friday!!!

Holy moly, there is so much going on in my life right now, I don’t know which way to look first. I almost forgot about it being Friday!! Oh no!! Moving on….

My medication was kind of switched around when I went to Houston, and I was taken off Norvasc for a little bit while they changed my dose. So the most magical thing happened, my fat ankles disappeared!! I was so happy that I took a picture of my foot and put it on my Instagram (You can follow me at haleyann92). Oh yes, I abused having skinny ankles. I wore heels, my fancy sandles and traded out my long dresses for short ones! Well now I’m back on the miracle drug and fat ankle fashion was needed all over again. Woo-hoo! Round two of Fat Ankle Fashion, but with clothes!!

For a while I just thought I would have to stick to jeans to cover these awful things up, and then I saw the light one day! MAXI DRESSES! DUH! This is such an amazing, cute and stylish alternative to spice things up! Plus, Maxi dresses come in all kinds of styles, prints and colors so it will never ever get boring. In Texas, it’s going to stay pretty warm for a while, so I can keep wearing these probably into November. We will see though. I love this one, because we are getting ready for fall and I think it has lovely colors!! Its simple, elegant and says so much with so little! You feel fat but you arent little darlin’s! Believe you me. And you especially wont look fat in this. 🙂 Maxi dress shopping tomorrow? I think so.

Black Hills Bold Dress available at modcloth.com

-haley

Texas Ink

Hello lovelies! So, I am full-out sick yet I’m still having a pretty good week! I would love to wear my oxygen, however, putting a cannula up a stuffy nose is a little useless. I cant wait to get my first full paycheck, not only because paying for school but retail therapy! DUH! I’ve also had a craving for a new tattoo lately. Oh yes, I love tattoos. I wanted one for a long time and was told that it wouldn’t be a good idea having PH, so I avoided the hassle. But finally the craving got to be too much to handle and I did it anyways. Somewhat with my doctors permission. I’m totally that patient yáll. The one the doctor just wants to secretly murder cause I’m never really quite doing what I’m suppose to be doing. But for the most part I listen!! 🙂 I’m not TOO horrible.

I presented the idea to my doctor back in February, asking if it would be ok. Since I was finally doing better, he said he thought it was fine as long as the artist knew the risks. That was the other thing, making sure the artist understood the medication I was on. The thing about Pulmonary Hypertension, is most people develop blood clots as a side effect, so most doctors put us on a blood thinner like Coumadin or Warfarin. I’m on Warfarin, and being on a blood thinner we get our “pro-time”or INR checked at least once a month to see how thick or thin our blood is and keep it in a certain range. Believe me, I’m totally that patient with a million missed calls on my phone because I haven’t had my blood checked in two months. One time they scheduled a little intervention for me on why I had to come. Oh yes. I’m awful. Do as I say, not as I do people. Well the risks with any blood thinner is not to get bumped (especially your head) or cut cause you’ll bleed or bruise more easily. I even had to switch to a soft bristle tooth-brush because my gums would bleed. So, before having a needle go through my skin a thousand times a minute, it was a good idea to be off that medication for at least a week. It was a risk that I don’t recommend doing without doctor approval.

A month later, I chose the best place in my town to get tattooed at! Which is the most important step. I also went in 2 weeks ahead of time to show my artist what I wanted and to see if he could do it. My original tattoo wasn’t a possibility in the area and size I wanted and he was honest with me by saying no. So we decided on my backup plan which worked perfectly and I love it more than my original choice. Chris (my artist) was clean, calming, funny and helpful! He took time to help me choose exactly what I wanted and he made me a little less nervous when tattooing me. Did it hurt? Somewhat. It felt like a cat scratching me over and over. After about 15 minutes, it starting to sting a little more and more but I was shocked at how horrible it wasn’t! I love my tattoo and definitely want more (in hidden places). Don’t let your disease stop you!! Pursue it, WITH doctor approval!

I have “PHenomenal Hope” tattooed across my left side on my ribs. The capitalization of the PH symbolizes my PH obviously, and I wanted it close to my chest since this is where my disease originates. Plus, rib tattoos are just pretty. Excuse the cheetah print bra. The tattoo is actually straight across, but my arm is lifted pretty high! I absolutely love my tattoo and it’s something I’ll never regret. The recovery hurt more than the tattooing in my opinion! I was super sore, and actually ran a fever the next day! So prepare for that. I didn’t bleed or bruise at all throughout the process either. Lucky me. So yea, I’ve joined the ink clan. And I’m ready for more. Prepare for Kat Von Haley.

-haley

You’ll Grow In My Heart

Sneezy nose, body aches, and chills…I think I’m getting sick since I’m back to spending most of my day with kiddos, and all kinds of germs! Despite the whining, screaming, and dealing with sickness all the time I am absolutely in LOVE with my job. It’s amazing to watch teachers that teach from the heart and others who are there to collect their paycheck. I’m sorry, if you don’t love kids get the HECK out of this profession. I have always had a soft spot for kids, I absolutely love them, and for a long time have looked forward to the days when I can show off my baby bump as well as my moody teenagers. Having Pulmonary Hypertension has definitely put a dent in this dream.

Going to work is a daily mental battle for me. Most people think that dealing with PH only happens when you’re in a hospital. WRONG. The littlest things set it off. For a long time now I’ve wanted children of my own. I know what I want, and I know what is right for me.

I’ve always had my mind set on four kids, and still do if its possible. One of the questions I asked right after I got diagnosed was, “Can I get pregnant?” When the doctor told me the mortality rate was around 85% for women who try to carry with PH I was absolutely heartbroken. I was going to be one of “those girls” going through the adoption process for years, getting turned down left and right, and spending thousands of dollars. I wanted my baby bump, to know what it felt like to have my own, and I did not understand (and still don’t) why this disease kept taking things from me. Working with kids, I treat them like my own because in a way I feel like its the only chance I’m going to have to connect with a child and take care of them. It’s very hard to let go for the summer and watch them grow up. I got SO attached to my class from last year (it was my first year of teaching) and actually cried the first two days of this week watching them go to their different classes. I get very emotional when they show improvement too.

Having kids is just a touchy subject. I dated a guy for a very long time, and when his sister in law got pregnant it was very hard to cope with. I was truly happy for her, but being around pregnant friends in general, I have to lock up my green eyed jealous monster with a smile. He did not understand how worthless it made me feel knowing I couldn’t do that, especially when he played with his nephew. I realized he wasn’t trying to make me feel worthless at all he was enjoying his family, but with those unresolved emotions it can just bring up the sadness all over again. And when someone doesn’t understand that or support you, that’s even worse. Walk away from that person immediately.

I found this lovely picture on Pinterest about adoption that says “You grew in my heart instead of my tummy” and that made me so happy. I’ve watched a good friend raise her adopted daughter who is just wonderfully cute, and completes their family perfectly. My mind is slowly starting to accept adoption, and I’ve talked to my doctor about surrogacy when the time is right. If you are going through this as a young woman, or have gone through this, I feel for you. You don’t understand until you’re going through it yourself, and its amazing the little things that set it off. I love my pregnant friends dearly, as well as their children but I definitely avoid the hospital gift shop with it being covered in pink and blue “welcome to the world” crap. I always take a friend with me when visiting friends who just delivered in the hospital, so someone can take the breakdown I have when we leave that floor. Therapy helps so much in so many ways! One day this wont be as big of a demon to fight, but for right now its one of the biggest. I will get through it someday and so will you. Explore your options, talk to your doctors, support your pregnant friends and talk to someone. For me its been the only way to somewhat heal.

-haley