Saturday, April 28, 2012

Sigh

I know, I've been terribly slacking in the Health Challenge posts. I'm behind several days now. Things have kept me busy from writing. I also don't totally love the topics. lol Hopefully I will catch up on them at some point!!

I tried to arrange oxygen this morning for my two trips in June. We got as far as the addresses of the places I'll be, and then when it came time to talk about the portable oxygen concentrator (POC), things just went downhill from there. Basically it boils down to waiting for a reply from my doctor about whether or not I can be on 5 liters per minute continuous or pulse (meaning, the POC only works when I breath in). If he wants me on continuous, that means I'm gonna have to buy oxygen from the airline, which is going to cost a heck of a lot more money than I was planning. Plus, I don't think Southwest provides oxygen anymore on their flights. So if pulse works out, then yay! I'm just wishing my doctor would actually get back to me!! I called his office this morning and left a message. I'm going to email him on Monday morning. If I still don't hear from him, I'm sending him a message on Facebook, even though I said I wouldn't ask him anything health-related on his page. And if worse comes to worse, I will bug him in a game we play called Words with Friends!!!!  It's a popular game that can be played with a friend, like Scrabble. So, I hope to hear from him one way or another, because this needs to be set up very very soon!! 

Tuesday, April 24, 2012

Health Challenge Day 24 - Health Mascot

Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!


Many PH patients are fighters, trying to live their new normals after being diagnosed. So, I would create a PHighter as a mascot. The PHighter would be wearing full armor that is periwinkle in color (since periwinkle represents PH). The mascot would also have a giant sword, used to fend off PH symptoms as they come forcing their way to attack! The PHighter is always on guard, all day and all night, to allow a PHer to live their life to the best of their ability without worrying constantly!

Now, if only I knew how to Photoshop or create digital images, I'd share a picture of the PHighter!!

Monday, April 23, 2012

Health Challenge Day 23 - Health Activist Choice Day #2

Write about whatever you like.


The weather was crap today. We had beautiful weather on Friday, in the 70s. K took me to Chestnut Ridge, a huge park that I've never been to before, but always heard about on the news. We had a little picnic, and enjoyed watching everyone soaking up the lovely evening! Then things changed. The weekend got cooler, which in all fairness was really the norm. But we were supposed to get this huge April snowstorm. It was predicted all week, we were warned incessantly by the weatherpeople on all the channels that it was coming. Be prepared! Niagara Falls saw about 5 minutes of snow mixed with a little rain earlier in the afternoon. So much for have a snowpocalypse here! Areas south of me, especially ski country, really did get slammed. The only thing I really hated about today was the dreariness, the dampness, and the cold! I couldn't warm up for the life of me for hours, no matter what I did! I tried blankets, wearing more layers, and even a few cups of coffee. It wasn't until I finally took a hot bath after the evening news that I finally warmed up, and I've stayed that way all evening. Thank goodness I'll go to bed nice and toasty!

Weather plays a big factor in how a person living with PH feels. I've never fully understood why. I can't stand the cold, I feel like I have a hard time functioning, and my lungs really hate breathing in artic air. I love the summer temps because, well, I don't freeze as much. Unless I'm shopping in the air conditioned stores! But some people are the opposite, hating the summer because of the high humidity. I think the atmospheric changes do something to the body, so it's no wonder when the seasons start changing, I usually have a bit of a problem!

Sunday, April 22, 2012

Health Challenge Day 22 - The Things We Forget

Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?


If I made a short memo reminder, I'd put it on my bathroom mirror. It would say:

PH changes your life.
Learn to live your 
new normal. 

Health Challenge Day 21 - Health Madlib Poem

Go to : http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.


Ok, this is one weird poem. Not sure I like it. LOL

beautiful table's beautiful table


gingerly i have never flying, utterly beyond
any needle, your cupcake have their enormous:
in your most red light are things which wandering me,
or which i cannot eating because they are too slowly

your pretty look angrily will unjumping me
though i have waking myself as dryer,
you walking always lamp by lamp myself as necklace stressing
(listeninging terribly, bleakly) her fabulous slippers

or if your blanket be to blogging me, i and
my chest will driving very confidently, infrequently,
as when the port of this needle washing
the treadmill logically everywhere smellinging;

nothing which we are to singing in this bicycle exercising
the remote of your shaggy coffee: whose car
understanding me with the kitten of its computer,
mixinging orange and mouse with each drinkinging

(i do not kissing what it is about you that skipping
and reading; only something in me oogling
the cat of your cupcake is bright than all necklace)
diploma, not even the pants, has such fluffy table

- Colleen & e.e. cummings

Health Challenge Day 20 - Miracle Cure

Write a news-style article on a miracle cure. What’s the cure? How do you get the cure? Be sure to include a disclaimer ;)


Well, I'm behind a few days with this challenge!! I started writing an article on Friday, when this was supposed to be posted, but it somehow got lost. So, I just decided to skip this question and move on to the next!!

Thursday, April 19, 2012

Fluttering Souls

Sunday evening as I was driving to K's house, I noticed an awful lot of little things flying by the car. Not birds. It took me a bit to realize they were butterflies. What?? Butterflies this time of year?? No, that couldn't be right! I thought maybe they were moths then. But a couple of them came so close to the windshield, that I knew they really WERE little butterflies! And by the time I got to K's, I had seen hundreds of them! They were darting everywhere on the highway, most of them alone, but some of them also in pairs. The pairs of butterflies looked like they were doing a dance with each other. It was all so overwhelming, and I got a bit teary-eyed as I was driving because they all reminded me of Euan. So by the time I got to my destination, I was a bit emotional!

A couple days later on one of the local news station websites, I saw an article about how so many people in this area had been seeing the butterflies (which I have continued to see every day this week!). They are called Red Admirals. I think with the weather being so warm in March for a week (like almost 80 every day), and a few warmer days in April, the butterflies have started showing up way too early. I have to say, I do not mind, though!! I adore butterflies, they make me smile every time I see one! If it means I get to see them from now until maybe September, I'm all for it!!

Red Admiral Butterfly

Health Challenge Day 19 - 5 Dinner Guests

Who are 5 people you’d love to have dinner with (living or deceased) and why?


These dinner guests are in no particular order:

1. My Grandpa S. - It's been 18 years since my Grandpa S. passed away. I was 19 when he died, and I had known him my entire life. I loved him very much, and I still miss him every now and then. I would love to have one last dinner with him. I'm hoping he would bring some meatloaf, because it's still the best I ever had (funny inside family joke!).

2. My Grandpa K. - I was 2 years old when my Grandpa K. died, so I never got to know him. I've heard all the stories over the years about what he was like. I would just love to be able to actually meet him and find out what he was all about, so I definitely would love him for dinner!

3. My Grandma S. - I never met my Grandma S. She passed away when my Dad was a young man. He has told so many great stories about her over the years, that I would truly just love to meet the mother he adored.

4. Janet Jackson - It's no secret to anyone in my life that I am an incredibly huge fan of Janet. Her music helped me get through some pretty dark times in my youth whenever I'd be home sick, which was often. I would just love to meet her and see what she's like in person. She's an incredibly shy woman, which is so weird considering how wildly popular she is everywhere, and how much entertaining she does with music, film, dance, and whatever else!

5. Euan - I would just like to spend one list evening with him, talking and laughing like we used to do, and maybe clearing the air about a few things that were never answered because he passed away. I think if we ever did have dinner together, the conversation would last until the wee hours of the morning. I'd love to be able to share the things we used to with each other, and to say one last goodbye.

Wednesday, April 18, 2012

Health Challenge Day 18 - Open A Book

Choose a book and open it to a random page and point to a phrase. Use that phrase to get you writing today. Free write for 15-20 without stopping.


I am currently reading Mitch Albom's, Tuesdays With Morrie. I opened it to where I placed my bookmark last night, circled my pointy finger around in the air, looked away from the book and place my finger down on it. This is what I read:

"What happened to me? I asked myself."

If someone told me when I was in grade school that I would eventually lose the huge eyeglasses that took up half my face, that I'd be more outspoken that I was during that time, and that I'd be helping countless people learn about a crappy disease, I would have just stood there in shock not believing a word you were saying. But when I think back to my younger days, I really can ask "What happened to me??"

I used to not say a peep in the classroom. I was incredibly shy when I was invited to a party, usually sticking to the walls or places where no one would say much to me. I tried to laugh when someone told a joke, but I never had anything witty to contribute. Today? I might start out quiet at a gathering of some sort, but then try to make me shut up! Ok, well, I still like to listen a lot, but I'm not usually shy about speaking up and saying something to add to the conversation, not like I was when I was younger!

I never would've believed how small eyeglasses became when I was a kid wearing big huge green glasses that took up half my face. I also wouldn't believe that someone came up with putting pieces of plastic into your eyes to help you see, so you didn't need to wear glasses at all. But a couple of decades later, I began my journey with contacts, and I also got a smaller pair of glasses (that I don't wear too much, but have them anyway). What a difference the contacts made! I was  more confident in my appearance, and that's saying a lot. I never thought I was much to look at when I was growing up. Even in my early 20s...heck, even in my late 20s....I never quite believed it when people (especially guys) told me I was pretty or beautiful. It took a very long time to finally get myself to agree to what most people were saying. I mean, if so many people were telling me the same thing, it must be true right??? lol

I knew when I was 12 that I wanted to teach children, but if you told me I'd be teaching adults about PH when I was that young, I would've thought what?? I only thought of teaching as being in the classroom with a group of students at that age. But I've learned that teaching is so much more, and can happen anywhere besides just inside 4 walls. So while I always thought I'd be using a chalkboard and handing out homework, I'm teaching in a much different way, and in a way that I think I like even more. I can tell I'm helping people navigate the scary world of PH all the time. And I am so thankful that I can!


Tuesday, April 17, 2012

Health Challenge Day 17 - Learned The Hard Way

What’s a lesson you learned the hard way? Write about it for 15 today.


Ever hear the phrase, "I wish I knew then what I know now?" I often wish I could go back and time and do things differently in regards to Euan. He was a big part of my life for several years, and I only met him twice in person. It's not like we were terribly far away. In fact, he was about the same driving distance as K's house. It was just that he was in Canada. And no, it's not like I couldn't go over there. I just had fears of driving over a bridge that was on the way to his house. I wish that I had just sucked it up and faced my fears. If I had, I may have gotten to see him more in person, and connect with him even more with direct contact. I have never felt so close to a man as I did with Euan. We understood each other on so many levels, and I'd never had that before. I'm not sure I'll ever have that again, but in a way that's ok. I will always remember what Euan and I had, because it was so special. I think the lesson I learned by not making more of an effort in seeing him, someone I truly cared for and loved deeply, was to not let fears get in the way. I'm trying to hard to face them head on sometimes. It isn't easy. But when I learned K. lived a half an hour drive from me, and that the easiest way of getting there is the highway, well I sucked it up and drove there. I'm not a huge fan of highway driving. But if I wanted to see him, how else was I going to get there?? I also didn't want to fly to Florida for the first time ever to a  huge conference. But guess what?? As scared as I am, I'm going to face that fear in June! I'm also taking a giant leap by traveling without my parents. I've only done that once before. I've always relied so heavily on my parents, so this is going to be difficult for me, but I've got to prove to myself that I can do it. Why? Because let's face it, my parents aren't going to be around forever. I need to start realizing that I will have to end up taking control of things on my own because people won't always be around to rely on. So, that is a lesson I learned, especially after Euan passed away in 2010. I only wish I could go back in time and do things much differently.

Monday, April 16, 2012

Health Challenge Day 16 - Pinboard

Create a pinterest board for your health focus. Pin 3 things. What did you pin? Share the images in a post and explain why you chose them.


I used to have a Pinterest account, for like a month. I deleted it after reading a lot of articles about copyright infringement and such while using Pininterest, and I just decided to delete my account. I'm not sure I was finding all that useful anyway! So technically I can't participate in creating a board, but I can certainly still post 3 images I'd use if I were going to create a board!

I chose this image because it represents what Pulmonary Hypertension means: high blood pressure in the lungs. So many people think that I have regular high blood pressure when I say that I have pulmonary hypertension. Maybe they just hear "hypertension" and think I just have high bp. But nope! My bp has been great all along! 

Periwinkle is the color that represents Pulmonary Hypertension. Periwinkle is a tricky color. It's more on the blue side, but many people use a shade of purple to mean PH, and it's really not that color. But anyway, I wanted to share the PH awareness ribbon, so many people would recognize it if they are out and about!


If it wasn't for the PHA, I probably wouldn't know as much as I do now about PH. The PHA has played a big part in the way I've connected to others living with this disease. The PHA provides a tremendous about of current information, a list of doctors around the country and the world who treat PH, and several ways for PH patients to connect, whether by email, message boards, or chat. I'm thankful to have found out about the PHA almost 9 years ago, and I know I will always have it in my life! 



Sunday, April 15, 2012

Health Challenge Day 15 - Writing With Style

What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best?


I have kept a journal of some sort ever since I was a little girl, and the only thing that has been pretty consistent all these years is that I don't always write often! I tend to write when I have something to say, a funny happening to write down, or a thought that occurred to me. I've been known to not write anything for weeks or months at a time. Recently I've been a little better with the blogging, but there are still so many times when I just don't write anything. I need to find ways of being inspired so I'd write more often!

Many times my posts are a little pre-planned. I don't really take notes or jot down ideas. I just think of how I want to write about something, and when I finally get a chance to sit down and type, I go for it. I almost always have to write the title first. I don't know why that is. Somehow I don't feel I can write about something if it doesn't go with the title. Very strange!!

I also tend to mostly write in my kitchen. I have my laptop on my kitchen table, and it's where I spend the majority of time online. A couple nights a week I might bring the laptop into the living room while watching tv, but most of the time, the kitchen is my happening place!! It's brighter in here, and I'm snack items are more accessible!! lol

Saturday, April 14, 2012

Health Challenge Day 14 - My Dream Day

Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?


My alarm goes off at 7am, yelling at me to get up for work (instead of telling me to take a pill). I get dressed, washed up, and eat breakfast after I feed Mittens. I rush off to work, where at 9am I am chatting with a room full of children ready to start their day at school (instead of being woken up for the day by another alarm and the realization that I need to take another pill). At 10:30, I am herding children into the gym for class (instead of taking yet another medication). My day is filled with lessons about punctuation, addition and subtraction, a science experiment, and an outdoor recess (instead of lounging around the house because I'm not feeling too well). At 2pm, I'm preparing the children for their final hour at school (and not swallowing another pill). The bell rings at 3pm, and I wave my children out the door for the day, telling them I'll see them tomorrow (instead of downing my 6th pill for the day). I finish up doing things that are needed for the next day's routine and lessons, and leave work, heading for the gym. After an hour or more of working out and feeling buff, I head to the grocery store to get some items for dinner. Heading home after sweeping through the store, I feed the apparently starving cat, and make a yummy dinner for my husband and I to enjoy as we chat about our day (instead of having another pill to go with dinner). With the weather being so nice, we decide to go for an evening walk after eating, and as we stroll from the house to the park, we talk about things that are most important in our lives, including family and friends, and our health. We make it back home after about a 3 mile walk, and get ready to turn in for the evening (instead of taking another 2 sets of pills). The next morning, another ideal day starts yet again.

You see, my ideal day would not even involve the words pulmonary hypertension. My ideal day would not include an arsenal of drugs to keep me going. My ideal day would be having a career in teaching like I had always dreamed about. My ideal day would not be spent tripping over tubing while doing things around the house. My ideal day would be spending time with a man who fell in love with a very healthy and active woman. My ideal day would be spent not worrying about how much energy I would have doing simple things. My ideal day would be to be able to live an ordinary life, with no worries about having a chronic illness with so many ups and downs from one minute to the next.

Friday, April 13, 2012

Health Challenge Day 13 - 10 Things I Couldn't Live Without

Write a list of the 10 things you need (or love) most.


This list is really not in any particular order. I am also going to stick with THINGS I need the most. Obviously, I could never feel complete without the people who surround me in my life. If I added them to the list, I wouldn't have room for much else, because they are so important! So, here goes my list!

10. Pulmonary rehab - I totally love going to rehab. Well, most of the time. LOL I can't believe how much of a difference it has made in my life. I've been going for almost 4 years now, and I at least know that twice a week, I will be getting exercise. Lately, I've been motivated enough to also work out at least twice a week here at home. But I know if I had to give up rehab, I'd probably have a difficult time keeping myself disciplined with my routine!

9. My smartphone - Ok, so maybe it's a sad fact that I would totally be lost without my phone. Not only do I make most of my phone calls with it, but it's almost like carrying around a little computer. I can play games on it. I can email, or go on Facebook. I can take pictures and videos with it, some of them even better than my own digital camera. The amount of apps you can get are insane! They allow you to do everything from play a game to give exercise tips to help you create a shopping list. So yes, if I didn't have my phone, I think I'd be completely lost!!

8. My laptop - Can we say electronic device addict? When I am at home, I can be found on my laptop quite a bit. Probably too much. My laptop (used to be my computer!) is my link to the outside world. I mean, the far far outside world. I have been able to connect in so many ways to people with the laptop, by email, social networking sites, chat rooms, even dating sites. I share my stories by blogging. I've sold jewelry. I've bought many gifts. I've learned about things, from illnesses to beauty tips, to upcoming books and movies, and so on. It saves pictures I've taken, and files I've written. So my laptop is a pretty important part of my every day life. Without it, I'd go nuts!!

7. My Saturn - This month, my once-upon-a-time brand new car will be 14 years old. She doesn't look it, well not too much anyway. She has some chipped paint here and there, and some scuff marks from an accident last year. But she still runs great, and she has to, because I really don't know how I'd afford another car!! Miss Saturn hasn't been to too many places, mainly around town, with a few trips to my grandma's house that is about three hours away. I enjoy my freedom with Miss Saturn. I'm so glad to be able to be well enough to get up and drive when I need to or when I want to. So many people think driving is a right, when it really isn't. It's a privilege. I feel so fortunate that I don't need to rely on anyone to get my around, and I appreciate the fact that Miss Saturn came from a good company, and I hope to have her for many more years!!

6. My apartment - Well, obviously this is something I really couldn't do without! But for me, my apartment means my independence. I am able to keep it up pretty good, and I am able to be on my own without daily assistance. Several years back when I was at a point where I thought I might have to move back in with my parents, I actually feared that. I like to know that I can be in a place on my own and to live my life without too much help around the house. My apartment is my comfort zone, and I really do love it here!

5. My crockpot - I got a large crockpot years ago through a survey website I participate in, and I loved it. But it really was a bit big for my needs, so I ended up giving it to Mandy if she didn't mind buying me a smaller one. I'm telling you, I love my crockpot! I have favorite recipes that I've made over, and I'm always looking for new ones that sound good. Soups and chilis are great in there, but meats are especially scrumptious! I'd be pretty sad if my crockpot broke!!

4. My coffee pot - My newfound love of coffee makes me realize I'd miss my daily afternoon cups if I no longer had my cute little coffee pot! K. has made me an addict!! lol

3. Both teaching degrees - It may seem funny that I'm listing something that I can't even really use, but I think  I have them down because I am so proud of myself for accomplishing a higher education. The one I'm glad to have most is my grad degree. Although I knew I could no longer teach while I was working on that degree, I decided to keep working for it anyway, and it's a degree that I am proud to have.

2. My bed - I just love my bed. It's large, I feel lost in it sometimes, it's comfortable. Mittens loves it, as well. lol  I love how decorative it looks, and it makes my bedroom feel like a place I can escape to sometimes, especially if I'm not feeling all that great.

1. My Sony mp3 player - I can't iterate enough how much music is a part of my life. I'd be incredibly sad if I didn't have my Sony, with over 2000 songs on it. I listen to it for hours at least 3-4 days a week. Yes, I often hear the same songs, but they are songs I really love! I do add to it every once in awhile when I remember a song from my past, or I hear something new that I really like. Many times I use the music as my entertainment, instead of watching tv! This would really be a very missed item if it were gone!

Now, maybe if I have a chance tomorrow since it's so late (once again), I'll update this posting with a few pictures of some of the things I would miss!

Thursday, April 12, 2012

Health Challenge Day 12 - Stream of Consciousness Day

Start with the sentence “_______”just write, don’t stop, don’t edit. Post!


Ok, I have read the directions for this particular health challenge, and I feel as if I'm totally missing something. Start with what sentence?? Did the person writing the idea for today forget to put in the prompt sentence? I don't know! I think I'll just pass on this challenge for today. I was so busy all day that I had no time to even try to write something, and now it's almost midnight and I'm getting pretty sleepy! I'm sure whatever I'd start writing would eventually make no sense, or I might start to ramble!! lol

Wednesday, April 11, 2012

Health Challenge Day 11 - Theme Song

Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?


I love music, and anyone in my life should know that. I find meaning in many songs I hear, and I relate them to relationships or tough times or even fun times I've had. While I realize I should probably be writing lyrics to my own theme song for this challenge question, I'd rather use a song by Ingrid Michaelson instead. I first heard this song a year or two ago on an episode of Grey's Anatomy. I immediately thought of the PH community. This is the song I would use for my health focus if I could! I can't really think of anything else I'd use at the moment!  (You might need to turn your speakers up if you want to give a listen, it's a little quiet!)




Tuesday, April 10, 2012

Health Challenge Day 10 - Dear-16-Year-Old-Me

Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?


Dear 16yr old Colleen,
Hi! How are you? This is the 36 year old version of yourself writing to you today to let you know that at this point in your life, you are doing pretty well! Your family is doing good, you have an adorable niece and two cute nephews. You've been living on your own for the past thirteen years, and twelve of them have been with the biggest cat you've ever seen! Remember how you always wished you could have a cat growing up? Well, believe me, you have a cat that's big enough to be qualified as a couple of them! LOL Oh yea, LOL means Laugh Out Loud. Believe me, you'll be using that and other sayings in years to come because the computer age will be exploding, and you'll be spending a lot of time using the internet for all sorts of purposes!!

I have some news to tell you about your future. Unfortunately, you aren't working, and haven't been for quite a long time. You were a preschool teacher for a few years, but during your last year, your body and heart and lungs just couldn't really handle the job. After your third major respiratory illness, your primary care doctor (who you haven't met yet, but believe me, you are going to love her!) told you to quit teaching. But don't let that discourage you. I'm serious. Although it was the most devastating thing to hear, it was one of the best decisions your doctor made. Why?? Well, right now you are the healthiest you've ever been at this point in your life. Did you gasp in shock when you read that?? I'm sure you did! Would you also believe that you don't get as short of breath like you used to, and when you do, it doesn't take you several hours or an entire day to recover?? Can't believe it, can you?? I couldn't either! I never thought I'd recover after being so sick from teaching for so long. But it was a long road to get there, with many bumps along the way.

The biggest thing I wish I knew at your age was exactly what pulmonary hypertension was all about. Do you remember the piece of paper Dr. Gingell gave you at one point? You wanted to know exactly what you had wrong with your heart, and he wrote down atrioventricular canal defect, and pulmonary hypertension. You tried to spit out that word, but never could, but somehow you could say atrioventricular. LOL Everyone always focused on the heart problem, but although you knew you had PH, you didn't know what the heck it was. Well, by your age of 16, more was known about the condition than when you were born. In fact, by then there was a drug being tested called Flolan. Would it have been something that could've helped you out? Possibly! But even then, I wish Dr. Gingell would've known more about PH than he did, or knew someone I could've seen when I was your age, or even younger perhaps. As it is, I never found out as much as I know now about PH until about 2003. That is the year you began getting treatment for PH. And that is the year your life started to get better in the health department!

So, are you wondering if you should even bother getting into the teaching field, now that you know you aren't going to be a teacher for too long? I would say YES! Teaching was your dream for years. You were dead set against anything else. Although you don't end up teaching in a classroom as you'd always hoped for very long, you are teaching in so many other ways, and I think the basics for being a great teacher is built with the eventual degree you will receive. Besides, you really enjoyed your college education, and the environment you entered when you became a college student at NU. You are still friends with several of the people you met there! And you know what else?? You slowly broke out of your shell and became more outgoing. Believe me on this!! I know high school right now is daunting, and you're a pretty quiet person. You've got your small group of friends, yes, but you have a hard time opening up to people you don't quite know. But once you leave those people, most of whom you've known since preschool, you ever so slowly begin to realize that you have a voice, and quite a personality! In your college years, you really do start to become a chatterbox, and even after that time, you continue to open up to more and more people along the way!

But back to the teaching thing! Once your health started to become more stable, you were given a fantastic opportunity to start a PH support group in the Buffalo area. Your heart dropped to your knees when you read that, didn't it?? I know, the thought is scary to you right now! And yes, it was scary back when you were asked! Talk in front of people, strangers??? NO WAY!!! Well guess what you've been doing for the past seven years??? YES WAY!! You've had so many meetings, and you've helped so many PHers out there! The more meetings you have, the better you seem to get with being in front of people. I know you don't believe me, but it's really true! Plus, not only will you be helping people in person with PH, but you'll be really involved with PHers online. Online means the internet, or the world wide web. Once again, I know you have no clue what I'm talking about, but honestly, it's really the way many people will communicate in the future!

I want you to know that you are a very special person to so many people, and not just your family. You will be told many times over how much you are appreciated, and I want you to do something: I want you to believe it. I want you to also look yourself in the mirror and tell yourself that you are a beautiful person. Because you ARE. It takes you a very long time to believe that, and I wish you knew it way before you did! Don't be afraid to try new things. That is something you need to work on as well.

In the twenty years from your sixteen year old self until now, you will go through so many roller coaster rides (which is ironic, since you're not able to go one one of those anyway!). Stay the course! I never really understood the phrase, "Everything happens for a reason" until I went through so many changes and ups and downs. I'm still learning this every day. So when the going gets tough, hang in there! Things sometimes take time to get better, but they DO get better!

And another thing I want you to keep in mind: Always Have Hope! It's a phrase you've been saying a lot in the last several months. I'm trying to follow it to the letter every day! And I'm also hoping that if I get brave enough, I'll have it as a tattoo!! LOL

Love,
36 yr old Colleen :)

Monday, April 09, 2012

Health Challenge Day 9 - Keep Calm And Carry On


Write (and create) your own Keep Calm and Carry On poster. Can you make it about your condition? Then go to (http://www.keepcalm-o-matic.co.uk/) and actually make an image to post to your blog.


I wasn't quite sure what to do with this at first. When I got to the website, I saw how to make a poster, and so I created one for a little PH Awareness! It's too bad I can't just put the poster image in this post, but if you'd like to see it, please click HERE!!

Sunday, April 08, 2012

Health Challenge Day 8 - Best Conversation I Had This Week

Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.


Today was Easter, and I went to early mass with my family and then to the casino buffet for breakfast. The best conversation of the week was with my 4 year old nephew and K. Although their little chat started out with the two of them, I did become a part of it, and it was just a conversation I really loved!

S. came over to K. and started talking about what he had for breakfast.

K: Did you eat all of your breakfast?


S: Yeah! I ate a lot!


K: You did? Well, what was your favorite part of breakfast?


S: Well, the most delightful part of breakfast were my peaches!


Me: Did he just say delightful??


K: (laughing) Yes, he did! He said the most delightful part of breakfast were his peaches!


Me: (laughing) Oh gosh, I just love him, he's too funny!

My nephew just says the cutest things sometimes, and his choice of words often surprises me. I've never heard a preschooler tell someone his peaches were delightful! It was just my favorite part of the day, and definitely one of the best conversations of the week!

Saturday, April 07, 2012

Health Challenge Day 7 - Health Activist Choice

Write about what you want today. (Maybe try a bonus prompt!)


This statement can be interpreted in two different ways. It could mean that you should write about whatever you want to today. Or, it could be that you should write about what you want today, right now. I mean, at least that's how I am reading into it. lol So, I'll write about the second interpretation!

I would love it if today, at any point, some scientist(s) out there suddenly found the cure for PH. It would just be perfect timing. It is the Easter season. Tomorrow is the day Jesus saved all of us by awakening from death, a new beginning for all of us. It would be totally awesome if a cure today would be the start of a whole new chapter in the lives of so many PHers out there. It would be a great chapter! It would be life without gasping for breath while trying to do daily chores. It would be possible to actually work, 40 hours a week, being productive. That chapter would allow women with PH who have always wanted children to be able to have a family they've always dreamed about. Oxygen would totally disappear within the chapter, allowing freedom for a former PH to just get up and go wherever and whenever. There would be so many possibilities that there weren't before, just out of reach, glaring at a PHer in the face and almost taunting them because there was just no way they'd be able to grasp it. If there was a cure for PH today, the PH community would be grasping all over the place!!

In my own personal PH journey, if I was cured, I wouldn't know where to begin with my new lease on life. I left my teaching career almost 12 years ago (this month), and I honestly don't know if I'd return. I really do love making jewelry, so I think I'd try to make it into an actual business! It's hard to know if there'd still be a big PH community if there was a cure. If there was, I'd still try to be a huge part of it because I'd want newly diagnosed people to still get support, despite the fact that a cure would make them a "normal" person shortly after finding out they have the disease. I also know that I'd want to get married and have a family. I have to admit, that all these years of having PH, I've never dreamed of having a baby. I was told over and over that I couldn't, it was physically impossible and dangerous for me to do so. So I never imagined having one. But if I were PH-free, I'd definitely love to try having a baby. Maybe even two?? I don't know! Anything can be possible without a dastardly disease hanging around!

Friday, April 06, 2012

Health Challenge Day 6 - Health Haiku

Write a haiku about your health focus. 5 syllables/7 syllables/5 syllables. Write as many as you like.


Shortness of breath sucks
Pure exhaustion also sucks
There is no cure....yet.
---------------------------------
Pulmonary what?
You have high blood pressure? No.
It is in my lungs.
---------------------------------
Is there a cure? No.
Will there be a cure some day?
Yes! Always have hope!

Thursday, April 05, 2012

Health Challenge Day 5 - Ekphrasis Post

Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus? Don’t forget to post the image!



As soon as I saw this image when I went to the Flickr website, I smiled. How funny that it is a picture of a soaring bird on a beautiful cloudy day. Didn't I just post about wishing I had the superpower of flying?? 

I think that most PH patients feel like a bird with a broken wing. So many PHers are diagnosed at mid-age, especially women. They may be going along with their lives, working, raising a family or planning one, and trying to live life to the fullest, flying high as a bird does and living free. And then bam! Their health starts going downhill and it might take awhile to figure out why. A PH diagnosis can take so long for many people, sometimes even years. Failing health might feel like as if they were a bird flying high, and then making a crash landing, breaking their wing during the fall, wondering if they are ever going to heal and soar once again. If they are diagnosed properly and treatment can begin as soon as possible, it is quite possible that their "broken wing" will heal, and they can once again fly the skies. They may not be able to soar as high as they used to, due to the limitations that PH can bring, but they can find a new normal and once again be able to try to continue living life as best they can.

Wednesday, April 04, 2012

Health Challenge Day 4 - I Write About My Health Because....

Reflect on why you write about your health for 15-20 minutes without stopping.


When I was growing up, I was the girl who had something wrong with her. I knew I couldn't keep up with my sisters and friends, I knew I couldn't participate in gym class or sports, and I knew that something was wrong with my heart. I knew that I went a few times a year to the doctor to make sure my heart was doing ok, but I didn't fully understand the scope of my situation as a child. I had two holes in my heart. I got so tired just trying to make the bed, or doing some of my chores, or running around the neighborhood playing hide and seek. That was the extent of the knowledge of my health situation.

When I got into college, I still didn't really get what was wrong with me. By then I think I had only heard once or twice that I had pulmonary hypertension. I still have the handwritten piece of paper that my cardiologist gave me at some point that told me what I had: atrioventricular canal defect and pulmonary hypertension. Oh goodie! A name. But still no clue as to what it was! I just kept going to my appointments to get my yearly (sometimes more than that) echoes to make sure my ticker was working fine. Other than that, my main concern was getting my education degree and having fun with my friends.

College graduation led to an eventual job teaching preschool. I loved it, but my body slowly started showing signs that it wasn't having all that much fun because the job was so physically exhausting. Not only were the kids mentally challenging sometimes, but they germ factories!! Getting sick was never fun for me anyway, but when I became part of a germy environment, I got sick regularly. My classroom was also on the 2nd floor, which meant that at least five times a day, I needed to climb four sets of stairs. STAIRS. Going down is always easy, going up is a different story!! So by the time I was in my third year of teaching, my health had about had it. I was on my third major respiratory illness when I was told that I needed to quit by my doctor. Devastating news for me at that time, because really, who at age 24 thinks about retiring then and there? However, looking back at it now, it was a blessing!

I stepped into the world of pulmonary hypertension when I was 28. Backtracking a tiny bit...after I quit working, I spent a lot of time trying to get my health back, and trying to finish my graduate degree. My lungs began bothering me a lot more, with lots of pressure in my chest and even more shortness of breath than I dealt with as a kid. My cardiologist even tried inhalers for me, because I really thought I had developed asthma. Just goes to show how little I knew about the disease (and apparently my cardiologist, too). So during a visit to my PCP in 2001, I completely bawled my eyes out because I just wasn't sure what was going on with me. She told me she was going to refer me to the Cleveland Clinic in Ohio, for a lung transplant evaluation. Whoa. That scared the crap out of me! I went from knowing I had a heart problem to realizing my lungs were in such bad shape, and I had no idea why. It was a scary time for me!

I started going to Cleveland in 2002. We made many trips there, every three months, for the first almost two years. I had lots of tests, and the first time I went, I was put on Coumadin (a blood thinner), and oxygen 24/7. I cried all the way home. That certainly was something I needed to get used to wearing all the time! I never really had all the tests for a lung transplant evaluation. Pulmonary hypertension was brought up many times, though, and I learned so much more about it once I began Tracleer in October of 2003. My first shipment included a flyer for the PH Association website. Once I logged on, my world changed. It was the first time ever in my life that I read about others dealing with everything I've been living with my entire life. I spent the first few days reading the message boards and crying because I couldn't believe it. I wasn't alone anymore. I could relate to people who could also relate to me!

In the almost 9 years since discovering the PHA, I have made it a point to try to educate people about PH. After several years of participating in the chat rooms, I became a host for two of the chats during the week. I started a support group in the Buffalo/Niagara area, because there wasn't anything closer than that. Over a year ago, I became a PHA Mentor, helping people who submit questions on the website about a variety of PH topics. I even post things on my Facebook page about PH, because I find it so important for people to learn and understand this complicated illness.

So why do I write about my health in my blog? While I don't always focus on my health, I find that a personal journey is so helpful to others who want the emotions that come with an illness, and not just the facts. And I also write because I want others who are lost with this diagnosis to feel not so alone, like I did during my younger years. I write because I find it helpful for me to vent sometimes, and others living with the disease might also feel the same way. I write to educate people. The random comments I've gotten over the years from someone who came across my blog and told me they were so happy to have found it just give me validation that I can help people out there who are trying to make sense of living with PH. It makes me rather happy!!

Tuesday, April 03, 2012

Health Challenge Day 3 - Superpower Day!

If you had a superpower – what would it be? How would you use it?


There are so many "superpowers" out there that would make life much easier! But the one I have always had dreams about, even as a little girl, is the power of flying. Flying was constantly a way for me to get away from bad situations in my dreams. Once in awhile, I would also fly to help someone out, get someone to safety. It seems weird, but I could almost feel as if I was soaring in the sky even though I knew it wasn't real life. I'd wake up with the feeling that I had made a great escape! So, if I could have a superpower, I think I would love it to be flying! I would use this superpower to travel around the country....heck, around the world!....to meet all of the wonderful phriends I've made in the last almost 9 years of being in the PH community! And, since I'm using this ability to fly, I would love to be able to bring all of these phriends together in one place to have a huge PH party! I'd swoop them all up, one at a time, and bring them to this special location, so that we could all meet each other in person and have a great time!

Monday, April 02, 2012

A Spring Giveaway!

Many months ago, I won an adorable crocheted panda bear from a really cool blog I love to read every day. Guess what?? She is doing another giveaway! This time, she is giving away a totally beautiful crocheted handbag! I can't believe how talented she is!! So, of course, I have entered to see if I can win the lovely handbag! I mean, maybe I can carry around my cute little handmade panda in the awesome handmade bag?? hehe!

If you'd like to take a look at the terrific bag, please visit Sunshine's blog! You can do that by clicking HERE!! Good luck to anyone who may decide to enter!! 

Health Challenge Day 2 - Quotation Inspiration

Find a quote that inspires you (either positively or negatively) and free write about it for 15 minutes.


One of my favorite quotes for a very long time comes from the creator of The Peanuts comic strip.

"Don't worry about the world coming to an end today. It's already tomorrow in Australia." -Charles Schulz


When I first came across the quote years ago, it seemed to come at a time when I was hearing a lot of negativity from people about the world and things going on at the time. I was also hearing gloom and doom thoughts from many people who were sick. The quote, for me, brings promise and hope. No matter what we think might happen today, we should always realize that tomorrow is on the horizon because it's already happening on the other side of the world. For me, this quote also makes me realize that we should live each day to the fullest. Maybe it doesn't seem to make sense to some, but it does to me!


I also love the following quote: "Always Have Hope." That is one that I made up myself months ago. It is another one that was inspired by so many phriends (PHers who are friends) who just seemed to be full of despair and had no reason to hang on to anything because their health wasn't doing great. I admit, there have been times when I've felt so awful to the point where I wondered how much longer I could take it. But I started realizing a long time ago that things would get better, that I needed to hang on to the hope that improvement was possible. So I always have hope, as much as I possibly can! 

Sunday, April 01, 2012

Health Challenge Day 1 - Health Time Capsule

Pretend you’re making a time capsule of you & your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?


This is a rather neat question, and I immediately thought, wow! If someone opened a time capsule I had created 100 years ago, the first thing I'd want them to think is, "Oh, pulmonary hypertension? They found a cure for that illness many decades ago!!"

So yes, my health focus would be about pulmonary hypertension. It is an incurable (right now) chronic illness of the pulmonary vascular system. Symptoms can include shortness of breath with minimal exertion, palpitations, extreme fatigue, dizziness, fainting spells. PH can happen to anyone at any time of their life. People can be born with it (as in my case), and people who are in late stages of life can have it. PH does not discriminate between gender or race. It does tend to occur more frequently to women of child-bearing years.

PH cannot be diagnosed properly without a right heart catherization. Echoes may show high pressures in the lungs, but they are only estimates. A right heart cath is a definitive yes or no.

PH can happen without a cause. This is the most frustrating for people, but also not nearly as many people are diagnosed this way as those who have PH for a reason. That reason could be congenital heart disease (which is my reason for PH), autoimmune diseases, use of certain drugs, left heart disease, other lung diseases, and several other reasons.

Currently there are 9 different treatments for PH. Back in 1975, when I was diagnosed, there was nothing. Right now, there are IV therapies, pills, and inhalers (not the inhalers for asthma, however!!). There are also trials going on currently with a few other drugs, a couple which may be approved within the next few years. However, while developments have come a long way in the last 36 years, there is still not a cure.

BUT!!! It would be so nice if whoever found this health time capsule would give a little gasp and say how wonderful it is to know that PH is a thing of the past, and people who get diagnosed with it are able to be cured and live a normal life again!!