Lets All Just Take a Deep Breath

I actually survived this week! College is stupid and teaching school has just gotten off to a rough start. Lets hope yálls week was much better! Its Fashion Friday!!

I am a jewelry hog, end of story. I love jewelry sooo much and have to be careful about not over doing it! A student actually asked me this week if I was rich because I’m always wearing “fancy” jewelry. Oh that made my day! I’ve always hunted for a “lung” necklace, and thought it would be a cool yet different thing to own. I’ve hunted forever until I discovered Etsy and I’ve been blown away at the stuff this site has to offer!! Oh my gosh I’m so in LOVE with Etsy! If you haven’t checked it out, please do. You can find almost anything on Etsy! Of course, I typed “lungs” into the search bar and it had so many search results including this beautifully sculpted necklace. I absolutely love it!! This is perfect PH fashion, its a conversation starter and you are not going to see it on everybody! Plus its a very reasonable price for such a high quality handmade item. Check out Etsy and see if its available! This is definitely at the top of my list. Sorry this Fashion Friday post is so short, but i am sooo needing some nap time with my cats. Nighty night yáll.

-haley

Hot Pink Oxygen

I AM EXHAUSTED. And there are no other words for my mood right now other than I hope yáll are having a better day than I am.

So, while in Houston I had to do my 6 minute walking test (which every PH patient does) and of course my oxygen saturation dropped to 80 which isnt so great, because the normal saturation level for people my age is 95 and up. My walking tests are always like that even though I feel absoloutely fine and not short of breathe at all! So its very frustrating trying to understand why my body says I’m not getting enough oxygen, yet I feel like I am. Following these bad results I always get a speech about how I need to start wearing my portable oxygen for heavy duty walking or even out to the mall and things like so. This is just so irratating, mainly because we all know what portable oxygen looks like. We see it jammed up the noses of the eldderly, the extremly sick or the hospitalized. The only time I’ve ever been in public with my oxygen was at walmart and of course people were staring. Its just a very difficult image to deal with and to present to people. So I guess I’m just gonna have to get back into the swing of it! I’m trying just mainly wear it at home so I wont have to deal with it when it comes to the public. Its amazing how much oxygen does help though! I put it on and its amazing to feel the difference, and how much more oxygen I’m getting. For people who have to wear their oxygen in public, I applaud you! I am glad you are able to do that, because for me Its still a mental battle. I feel fine, therefore I want to look fine and don’t want to portray this image of a “sick” person when I don’t even feel it. Its a very frustrating mental block for me to get past, but something I will to have to work on.

In the meantime, I’m all about changing the medical world look and making it a little more fun. For instance, I HATE surgery socks. We all know that the operating room is extremely cold and part of the surgical teams job is to keep the patient warm! Being on blood thinners, I am ALWAYS cold, so for my last heart cath they steamed my blankets. Oh yes, I was a happy little patient. But also with every patient, they slip these ridiculous looking surgery socks on you’re feet. I hated them, because yes, I am that crazy girl who wants to look good before, during and after my surgery! So to counteract those terrible things, I bought some leopard print Betsey Johnson fleece socks. They are amazing and so freaking comfy, and not to mention CUTE! So anything I can find to make PH look a little better, I take it and run with it. For all you people on Oxygen, I found COLORED CANNULAS! I know that these have been around probably a while, but I have never seen or even heard of them! I think these are great for spicing up your oxygen lifestyle and are great for kids too!! So far, they have been pretty cheap, so I might find myself breathing through a hot pink tube pretty soon!

Well I hope this somewhat helps what yáll are going through with being on O2 and maybe It’ll help me along the way! Its definitely hard to accept some facts and lifestyle changes with this disease, but that is all part of it. Have a lovely week!

-haley

Fat Ankle Fashion

Happy first Fashion Friday yáll! 🙂

What in the heck is a Fashion Friday? Well, lets just start with that I am a fashion freak! But being on certain medication and PH treatments, lets just say it can have some effects on your body. My problem? FAT ANKLES. No joke. I’ve always had pretty skinny and bony feet, until I got put on vasodilators. These pills cause swelling (edema) in people’s feet which means the more I stand, the fatter they get because all my water is sinking down into them. I’m always on the go and doing something, and even when I’m standing in front of the mirror applying my makeup, I can feel them puffing up. They are the most embarrassing thing ever! I remember the first night I slipped my shoes off and happened to look down at my feet. I set them up on the stool in front of me and cried like a little girl. I thought I was so ugly! I may not be crying like a little girl anymore about it (well sometimes), but I’m working around it!

Everyone else may not notice my huge ankles, but I do. And when something bothers you, you’re just uncomfortable all day. With that being said, every Friday I want to introduce trends, clothing and accessories that are great for PH patients that work for issues with our bodies all the way to things that are just plain cute. So, sit back and enjoy your first Fashion Friday…I hope. 🙂

FAT ANKLE FASHION – WITH SHOES

In the summer, my swollen ankles are so much worse than usual so I definitely feel like an outsider when it comes to not being able to slip on a pair of shorts and cute little sandles! Finally I thought, “Psh! I’ll work around that!” I still continue to slip on a pair of shorts anyways, however I choose my shoes a little differently. Boots are a fantastic go-to. There are a ton of different options and styles on how to wear boots and what boots exactly. Whatever you choose whether its riding boots, high heel boots or straight up cowgirl boots, your ankles will be covered! Here I’ve chosen to show you the amazing Frye 8” Harness Boot (Available at Urban Outfitters). Since we are still in pretty hot weather, throw on a casual dress with some simple accessories and let the boots lead the way. Camilla rocks them perfectly! Take notes, yáll!

Now that we’ve covered the more casual side of this, time to dress it up! Ankle wedge booties! These beauties are the best. I’m using Deena & Ozzy Studded Wedge booties (Available at Urban Outfitters) as an example. Now these are perfect for that one event where everyone is going to be wearing heels, and you cant even attempt that right now at the risk of your feet exploding! Wedges are a perfect, still classy alternative. They offer more support and with styles like these,  they’ll cover those ankles too! For this particular look you can pair it with a long sheer flowy skirt, short skirt, skinny jeans and of course a knee-length dress. Dress them up or down and have fun with color when it comes to these black things! Add some awesome accessories but not over powering. Let the shoes do the talking.

I hope yáll enjoyed your first Fashion Friday, and picked up some great tips – swollen ankles or not!! Have fun with your style whether you’re a PH patient or any patient that’s covering up edema or just having fun. Be comfortable and confident with your situation, no matter what that might be! 🙂

-haley

Total Comfort for a Total Recovery

What a long week its been, and its not even Friday!

I was due for a checkup with my specialist in Houston, because where I’m from we don’t have a specialist for Pulmonary Hypertension. So we have drove forever and made it down here yesterday. Its been about 2 years since my last heart catheterization, so I was fully prepared to have one when I came down.

PH patients have heart caths not only diagnose this condition, but to also measure pressures and look at the structure of the heart itself. We go through our regular checkup, walking tests, blood work, echocardiagrams and sometimes heart caths are necessary. I’ve had two so far – one in my leg and one in my neck. If they go through your femoral artery (the leg/groin area) you have to lay flat for 6 hours after the surgery (to keep from busting that artery back open), your leg will be sore and bruised for a while after, and you risk some nerve damage. I have nerve damage from my first heart cath. I get severe pain in my right leg, it’ll give out on me going downstairs and strength wise its just a lot different than my left now. When it comes to the neck cath you can leave practically an hour after, however your neck will feel awful almost immediately! I could not move and it wouldn’t stop bleeding for a while after either. I couldn’t believe how comfortable I couldn’t get! No pillow would support my neck right and not to mention the pain. We went to a pharmacy to pick up my pain pills right after my surgery and my dad bought me this goofy looking pillow that he thought would help. I was just so ready to be back to the hotel and lay down that I didn’t think twice about the pillow.

This “Total Pillow” was my hero! Dude, this thing was legit. I could bend it any way I wanted it, but mainly I would fold it in half where it cupped the back of my head and supported my neck perfectly. I didn’t have to move it or try to lift it at all. Definitely saved my life when it came to surgery recovery!

So on this trip I brought it, fully prepared to take on the wrath of a neck heart cath. Luckily, my recovery is going excellent! Just an echo, blood work, walking test and a check up! For some of you who want to know exactly the medications I’m on are: Norvasc, Adcirca, and Warfarin. The Norvasc has worked so well for me that we are having to lower my dosage!! I am definitely lucky when it comes to this recovery, and didn’t have to have a heart cath. But that doesn’t stop other PH patients from having to go through them!! So if you have to have a heart cath anytime soon and know its going to be in your neck, get this pillow! Its amazing and I know you’ll find one! I have ugly blue, but looks like they have some cute colors and designs available now. Definitely may invest in a cute one to bring with me to the hospital for future caths to match my leopard surgery socks. Be a patient IN Style and IN comfort!! 😉

-haley

Go With The Flow…And Burn Some Calories While You Do It!

Happy Monday lovelies!

I don’t know about yáll, but even though summer has reached its end It doesn’t mean we should stop working on making our bodies look great and healthy. For Pulmonary Hypertension patients, working out is an absolute no-no unless you’re really lucky! With PH and any physical activity, we usually black out accompanied with low oxygen levels and high heart rates. Even after treatment plans, some PH patients still can’t workout. Luckily for me, my treatment has been wonderful and I’m able to exert myself just a bit. I still can’t run a marathon or go to the gym and pump weights, so I’ve had to find certain workout routines that my body can handle, but will still actually make a difference.

I’m so excited about sharing this program because I actually did it as a PH patient and saw real results. This is a program called “Body Flow” by Les Mills. It’s a combination of Yoga, Pilates and Tai Chi that’s intended to build flexibility and strength but its ALL ABOUT BREATHING! You’re going pretty slow through these stretches as well as strength training exercises but the whole goal of the class is to control your breathing! And the best part? You’re burning around 400 calories while doing this. I did this through my community college and I was in love from the beginning! You wear comfortable clothing, no shoes and you’re on a yoga mat the whole time. Some of you know, I use to be a dancer way back when. My diagnosis with PH really destroyed that, and I still have no idea how I did half the things I did and survived. I thought I would never be back to my old self, the flexibility I had and the strength, but after doing this class for 5 months I felt completely different.

I’m just sayin’, if you have the ability to workout with your PH and even if you don’t have PH, DO THIS CLASS! Of course let your instructor be aware of your condition. But in my opinion this is one of the best options when it comes to exercise with this disease because it’s all about breathing and controlling your heart rate. I love Zumba and things like so, but I have to be very careful when it comes to pushing it in those types of classes. I feel my heart rate rise and know that im not in a good spot. I may be burning some awesome calories, but I’ve passed out doing Zumba.

By far, Body Flow by Les Mills is fan-freaking-tastic. If you’re capable, do it!! Excercise is important. Take a look at your local classes and see what they have to offer! 🙂

-haley

Slow and Steady Wins the Race

Well, I am entering basically my last week of complete and utter freedom. I teach school and I’m also a college student, so as of the 27th I’ll be back to slaving away at both. Most of the country is getting back into our school routines whether its with yourself or your children. Either way, its always sort of tough. And when you throw in your health it can really just unbalance the whole situation. So after a few semesters of college, I’ve somewhat realized what it takes to not completely lose my mind and let my health unravel as well. The first semester I actually should’ve gone to college with all my friends I couldn’t because I was waiting on a treatment plan, taking tons of trips to Houston Texas to see a specialist and having heart caths. I started a little late but I’m in full speed now!

I think its tough for any PH patient to take on school because it increases your workload on top of what you already have with the demands of our bodies and possibly a job. I’m lucky enough to be able to have a job and go to school, and if your doing that too with your disease then I applaud you. Its easy to convince yourself you’re completely normal, and when you throw yourself out there with the “normal” you realize how much extra it takes to keep up. So whether you are just going to school, working or both – take my advice. You aren’t normal, so provide a little extra cushion and time to keep up like so.

First things first, your schedule should never interrupt your sleep time. Rest is so ridiculously important and makes a huge difference. I’m a very “GO GO GO” type person who never really unwinds, but I’ve had to teach myself to do so (with the help of melatonin) because it can make a difference at how I “GO GO GO” during the day and whether I’ll actually be able to do it. So, if you’re a mom that’s running all over the place, remember to stop, breathe and rest. And if you’re a college student (and a mom too), rest really does make a difference. Your heart needs it.

Take advantage of the disability center and with telling your professor about your disease. I’m not saying, you need to make a huge deal about it and walk in with a “I have PH” shirt on, but they should always be aware. Something could go terribly wrong one day, and when they don’t know then paramedics don’t know, and could do something wrong that isn’t compatible with PH treatment. Bottom line – your professor should know. This gets me thinking about medical ID bracelets too. I have one, but I just straight up don’t wear it. If you do, then congrats. I just cant bring myself to. Also, parking is a HUGE issue. You shouldn’t have to hitch hike to class – sorry, you just cant! People think its no big deal, but walking a lot is a huge deal. My dad was very concerned about this when I started college, so he got me a handicapped plaque and it helped. I encourage this and if you don’t feel comfortable with getting one, then talk to the disability center and see if they can set something up. But I’m warning you, anyone who knows anything about PH knows that its basically invisible. Unless you’re wearing oxygen, no one can really tell anything is wrong. Well, I got to my college campus one morning for a class, chose a handicapped spot, parked my car and hung my plaque up. I gathered my stuff and started walking to class when a man started yelling at me. I turned around to him rudely asking, “Is this your car?” I replied yes then he followed up with, “Are YOU handicapped?!” I was BLOWN AWAY at the question and was highly offended. I yelled back “YES I AM!” and stormed off. When I came back from class, I saw a ticket waiting on my car for a “not parked wholly in side the lines” excuse. OH HECK. I took a picture of how my car was parked just to prove how ridiculous the situation was, because my car was parked just fine. To sum this story up, my dad and I went to the Dean of the school and it was handled immediately. I don’t care what happened to the man or the officer. I didn’t cross that parking line, but you sure crossed MY line.

All I really have to say about going to school with PH is be patient with yourself. College is tough so don’t overwork and push yourself too hard. You know where the limit is.

If you have a child with PH that’s attending public/private school, then I say promote it to the staff till the cows come home. People do not understand the complications, expectations and the demands of this disease. Its going to be real easy for a teacher, gym teacher or fellow student to overlook it and push the child. Make ALL STAFF very aware of what is going on with your child. I would take it so far as to printing off a PH info packet on what the disease is for each teacher and the principal, because bottom line its invisible and they wont see it. Your child will be in gym, out on the playground, walking up stairs, racing with friends or asked to participate in fitness tests. Awareness will save a lot of hassle and possibly your child’s life. I wouldn’t slack when it comes to making the school aware.

I’m sure you’re even more excited for school now, aren’t you? I thought so. Take it slow, my fellow PH’ers. Oh and have some fun back to school shopping, because I will for sure. Urban Outfitters, here I come!!! 🙂

-haley

Lets Get This Started

Well, I’ve finally decided to create a blog! I was receiving lots of emails and messages from people about their PH and journey with it. Its very inspiring to be a person who wants to be contacted and it made me want to start my own blog on my fight with this disease. I am new at this, so don’t judge.

Pulmonary Hypertension is a rare, incurable lung disease. A lot of people have no idea what this is, unfortunately. If you would like to know more please visit http://www.phassociation.org

This disease is not only a hard diagnosis to deal with physically, but mentally. Many people think that being diagnosed with something is about finding whats wrong, receiving your treatment then going on your way. Wrong. Yes we need to pick up and go on with life but there is much more to a “recovery” than that. You’re now embarking on a journey of accepting yourself physically and the new challenges you must meet with  medication changes, surgeries and therapies. You’re also dealing with yourself mentally, and this is highly over looked. Mental is the killer part and takes a lot more work than popping a pill to make that pain go away. For me mentally, my PH is a roller coaster. Some days I’m very positive about my disease and feel good about fighting it, and other days are very negative and disappointing. And I know I’m not the only one that has this issue. I was mad at the world when I was first diagnosed and in fact stopped my treatment with intentions to die, because I thought that death was my fate. I was put in a body that couldn’t function, and was numb emotionally. One day I met my brother for lunch on his work break and saw him with an awareness ribbon pinned to his work vest, as well as a “PHenomenal Hope” bracelet wrapped around his wrist. I realized how much support I had, and how much everyone else wanted me to fight. So I picked my negative self up and started treatment a week later.

The point of this blog is to discuss these issues PH patients deal with, as well as families, friends or just readers in general. I also want this to be a place where I can share tips and things I do to help live a healthy life style as a PH patient. I want you all to feel PHenomenal, just how I’ve been teaching myself to lately, because you are.

-haley