Monday, December 31, 2012

Have You Ever?

Have you ever flown in an airplane?

Have you ever gone to Florida?

Have you ever been to a huge conference filled with people who were dealing with an illness just like you?

Have you ever been to Disney World?

Have you ever been on a jet ski?

Have you ever been to Ellicottville, NY?

Or been to Chestnut Ridge Park?

Or even Griffis Park??

Have you ever seen a buck? Have you ever seen 3 buck in one day??

Have you ever been in a hot tub where the sign says bathing suits optional?? 

Have you ever started challenging yourself because someone else was getting you to realize you COULD try to do things you've never done before??

Well.....I HAVE!! 

This is pretty much the short version of my year in review of 2012. It's been an amazing year for me. Not only has my health continued to be pretty much in control for at least the 4th year in a row (although I had a couple bumps here and there), I was able to experience everything above for the FIRST TIME IN MY LIFE. I have to say, this was one of the best years I've had in a very long time!! I can only hope and pray that 2013 brings on many more new FIRSTS, and continued good health! 


Saturday, December 29, 2012

Holiday Crazies

The holiday season is crazy enough with gifts to buy, goodies to bake, cards to write out, gifts to wrap, decorating, etc, etc. I usually enjoy the busyness to a point, as long as I'm not totally wearing myself out. So the past few weeks have been a little nuts, trying to get ready for Christmas, which came and went. Honestly, although Christmas day was very nice, and it was good spending some time with K. and some with my family, I didn't really feel the Christmas spirit. I think it's probably because I've spent two weeks worrying and helping care for someone in my life who has been complications with diabetes. I'm coming to the realization that it's a nasty disease. And it's terribly difficult to watch someone go downhill quickly if they aren't taking care of themselves like they need to be. I'm also realizing that trying to help someone who doesn't seem to really want the help despite the fact they need it is a very, very tough thing to deal with. It makes me irritated and hard for me not to sound like a bitch, and I try to control my words when I want the person to know that all we're trying to do is help them. It's been a pretty trying couple of weeks at times, scary at other points, and I will admit that I had many moments when I just broke down and cried by the time I got home. So needless to say, I've been praying hard that this person can get back on their feet, get to new doctors who actually specialize in diabetes, and that the New Year brings them much better health!!

Monday, December 10, 2012


Christmas is coming, and I have been buying gifts for a couple of months. I usually start my shopping in the summer, but for the past two summers, nothing has appealed to me. I've cut back a little on spending, and so for a couple friends, I thought I'd try a new craft. I have made so much jewelry for my friends in the last however many years, I'm afraid they might be bored with it! One of my friends took a class on how to paint on glass, and she came over a month go to show me how. As tricky as it can be, I'm loving it! So I thought I'd make a few gifts! The wine glasses are for two friends,  and the beer mug is for K. I wanted to do tennis racquets and balls, but the racquets got frustrating. lol Anyway, maybe I'll just keep painting glass as a new hobby? If I really wanted to go crazy, I could glue beads all over them, too!?

Sunday, December 02, 2012

My Little Man

It's rather hard to believe that 12 years ago today, I was given a small puffball of a kitten as a Christmas present. A dozen years later, and he isn't tiny! Mittens is my kid, and I just love him to bits. He has brought me so much joy, as well as aggravation! lol I don't know how many years he'll still be with me, but being that he's an indoor cat, I'm hoping it's many more!

So Happy Anniversary, Mittens! As mommy always tells you, you're the love of her life!

Friday, November 30, 2012

Annnnnnd, It's Over!

Today is the last day for Pulmonary Hypertension Awareness Month. I'd like to think I helped spread some awareness through my blog, my Facebook statuses (which were the same as  my blog, mostly lol), and this year, through my PH display at 2 hospitals! I'm very happy I was given permission to do the display, and I am hoping I can do it all over again next November! Until then, I will continue to try making people aware of this crappy disease, because:

-Anyone can have PH
-Age and gender make no difference
-The symptoms mimic other illnesses, so a person can be misdiagnosed for years
-If not treated as soon as possible, it can lead to right heart failure

Thursday, November 29, 2012

Just A Quick Fact

I get asked often when I'm seen by someone wearing the oxygen if I used to smoke. No. Never. Dated a smoker a long time ago, and it almost felt like I was smoking, but no. I've never touched a cigarette.

PH is NOT caused by smoking.

There is my simple PH fact of the day!

Wednesday, November 28, 2012

Is And Is Not

I wrote this a few weeks ago to include on my PH display board since I had some space and needed something to fill it!! Since I'm winding down on PH Awareness month, I thought I'd share this info again!

Pulmonary hypertension


High blood pressure


Pulmonary hypertension




Pulmonary hypertension




Pulmonary hypertension




Pulmonary hypertension


Sleep apnea


Pulmonary hypertension


High blood pressure in the lungs


Pulmonary hypertension


Life-threatening if not treated


Pulmonary hypertension


Diagnosed by right heart cath


Pulmonary hypertension




Pulmonary hypertension


Life changing

Tuesday, November 27, 2012


The combination of my PH and congenital heart disease is known as Eisenmenger's syndrome. A phriend's mother posted all about Eisenmenger's today on Facebook, because her daughter also has Eisenmenger's syndrome. Since Jane let me, I'm just copying and pasting her post here!

Eisenmenger's is also considered a rare disease by NORD. I couldn't find out approximately how many people have the disorder though but it has to be under 200,000. 

Eisenmenger syndrome progresses over time as a result of a complication of a heart defect and the effects of high bl
ood pressure in the lungs. This hole in your heart causes blood to flow or circulate abnormally in your heart. Oxygen-carrying blood (red blood) from the left ventricle mixes with oxygen-poor blood (blue blood) from the right ventricle. This mixed blood then returns to your lungs instead of going to the rest of your body, causing high blood pressure in your lungs. High blood pressure in your lungs (pulmonary hypertension), when significant, can cause serious medical conditions.

Congenital heart defects of this type include:

patent ductus arteriosus (PDA) - a connection between the aorta and the pulmonary artery which allows oxygen-rich (red) blood that should go to the body to recirculate through the lungs.

atrial septal defect (ASD) - an opening in the atrial septum, or dividing wall between the two upper chambers of the heart known as the right and left atria.

ventricular septal defect (VSD) - an opening in the ventricular septum, or dividing wall between the two lower chambers of the heart known as the right and left ventricles.

atrioventricular canal defect (AV canal) - a complex heart problem that involves several abnormalities of structures inside the heart, including an ASD, VSD, and improperly formed mitral and/or tricuspid valves.

Eisenmenger syndrome is a life-threatening condition requiring careful medical monitoring. Medications can improve symptoms and prognosis.

Symptoms of Eisenmenger's include:

cyanosis (pale blue or grayish skin due to decreased oxygen in the blood)
dyspnea on exertion (shortness of breath with activity)
shortness of breath at rest
chest pain or chest tightness
heart palpitations ("skipping beats" or "racing")
dizziness or syncope (fainting)
paresthesias (numbness and/or tingling of fingers and toes)
blurred vision

Complications of Eisenmenger's can be:

blood clots (e.g., deep vein thrombosis in extremities)
hemorrhage (bleeding)
brain abscesses
kidney failure

Some individuals with Eisenmenger syndrome who have no other health complications may live into middle adulthood, and a few may survive into the fifth or sixth decade of life.

Some considerations related to Eisenmenger syndrome include, but are not limited to, the following:

Pregnancy is not recommended for females of child-bearing age with Eisenmenger syndrome. Pregnancy may pose a high risk of death for the mother as well as complications for the fetus due to effects of low oxygen levels in the blood.

Any anesthesia and surgery is considered high risk and should be carefully planned. Collaboration with a cardiac specialist is recommended.

Air travel and high altitude exposure requires adequate hydration (fluid intake) and supplemental oxygen to prevent complications.

Severe headache, dizziness, syncope (fainting), or changes in level of consciousness should be taken seriously and evaluated on an emergency basis.

Smoking and alcohol intake are not recommended.

Coughing should be controlled or prevented with a strong suppressant medication to prevent risk of pulmonary hemorrhage (bleeding from the lungs).

Flu shots are recommended annually, and pneumococcal vaccine should be received according to the physician’s recommendation.

Eisenmenger syndrome treatment is aimed at controlling the symptoms and managing the condition. Although there's no cure, medications may help you feel better, improve your quality of life and prevent serious complications. Doctors don't recommend surgery to repair the hole in your heart once Eisenmenger syndrome has developed, and any surgery may be life-threatening. It's important that you're treated by a doctor who has expertise in Eisenmenger syndrome.

Monday, November 26, 2012

Spoons Anyone?

Quite a few years ago, I heard about the Spoon Theory, a story written by a woman, Christine Miserandino,
who is living with Lupus. She was trying to explain to a friend how she deals with her energy every day, and the friend didn't get it. So she explained it by using spoons. 

The Spoon Theory is a story that can fit almost anyone living with a chronic disease, not just Lupus. It completely fits the life of someone dealing with pulmonary hypertension. There are some days when I might have a ton of spoons, and I can do a bunch of things and feel pretty decent. There are even days when I miraculously end up with some extra spoons by the end of the day! And then there are those days when I might drop all  my spoons on the floor the minute I get out of bed in the morning. I have often used this story to explain to my family and friends how it feels to live with PH. They seem to understand when I tell them I don't have enough spoons to deal with something. It sucks, but at least it's a way to open their eyes.

Sunday, November 25, 2012

Over A Century Ago

The first ever reported case of Pulmonary Hypertension was recorded 121 years ago.

37 years ago, still not much was known about the disease.

Today, we have 9 FDA-approved medications to help improve symptoms experienced by the disease.

There is still no cure.


Friday, November 23, 2012

A PH Tip

Nothing makes my heart start racing with immense anxiety when I am faced with something most people take for granted: stairs. Or, a hill. I immediately think, "Oh crap, I have to get up that! I'm gonna die!" It may sound silly, but I truly hate the feeling of a rapid heartbeat and being so short of breath I think I might pass out. And the sad thing is, I've been slowly increasing the grade on the treadmill at rehab so I can face stairs or a hill a lot better. I do think it's helped me a little, but I still have that fear of climbing!!

So, here's a PH tip for going up stairs: Go up backwards. Seriously, I have heard some PHers talk about this, but all I could think was how utterly ridiculous that must look! Well, I tried it several times this summer. And guess what? You look utterly ridiculous, BUT, it's so much better than going up the regular way! I would get to the top and realize I wasn't going to die! The shortness of breath was minimal, and my heart wasn't ready to pounce out of my chest! Whoo hoo! So I try to do that whenever I see stairs, and I also try not to care what people must be thinking!! Who knows, maybe they'd go try it themselves...when no one is watching, of course. 

Thursday, November 22, 2012

Giving Thanks

Today is Thanksgiving here in America, and it happens to be a favorite holiday of mine. Mainly because of the food! lol No really, Thanksgiving is great to spend time with family and friends, and to eat. A lot. :)

I happen to be thankful for so many things. My family is my life, my friends are wonderful, and my health is stable at this point in time. I have a roof over my head, clothes to wear, and a very loving "kid" I just adore.

And it may seem odd to say this, but in a way I'm thankful for PH. Obviously I don't love having this illness, nor do I wish it upon anyone. But what I'm thankful for is that it's given me a sense of purpose. It's allowed me to help others. It's given me time. Time to spend with my family and friends since I don't work. It's given me the ability to empathize, to feel a connection and understanding with those dealing with PH or any sort of illness. It's allowed me to appreciate the little things in life. Had I been a healthy person with a busy lifestyle, I might not see all those wonderful small details that God has given us. So yes, I am thankful for PH in these ways, but I will surely be most thankful WHEN one day there IS a cure!

Wishing all of you and yours a very Happy Thanksgiving!!

Wednesday, November 21, 2012


Have you ever wondered how it actually felt to have pulmonary hypertension? I mean, I can say to you that I get short of breath just making my bed sometimes.  Getting dressed some days, especially after a shower, can be a challenge. And in the winter, if I happen to go out to a store by myself, I drive right back home if I can't find a handicap parking spot because I know parking any farther will make me gasp by the time I get into the store.

But are you wondering what that actually FEELS like? Well, try this experiment. Walk up a flight of stairs. But walk up those stairs breathing through a straw. Not just any straw. Use a straw meant for stirring coffee. While you're at it, plug your nose while going up those stairs, breathing only through that tiny straw. Are you gasping for breath by the time you get up there? Is your heart racing, feeling like it's going to bound out of your chest down the street?

Yeah? Well, now you know what it feels like I try to vacuum one rug. Or when I try to go for an extended walk in colder air. Or when I'm just having a bad PH day.

Tuesday, November 20, 2012

It's Personal - Part III

I was never allowed to take gym when I was going to school. I really can't remember what I used to do in grade school when my class walked down the street to the gym. Most likely it was just staying in the classroom doing something. In middle school, I would walk down to the 1st grade to help out the teacher. It was then that I realized I wanted to become a teacher myself! Many times a person might change their mind about "what they wanted to do when they grew up." I never did. I went to high school, and by the time I graduated, I still knew that teaching was what I was supposed to be doing. I got my undergrad degree in elementary education, and after that I started subbing. At that time, I didn't have to go to grad school for my Master's right away, unlike now. I'm actually happy about that, because I didn't know what I wanted to study. Subbing lasted for a month before I got a job as a teacher at a day care. That job lasted two months before I became a preschool teacher at Head Start. After working there for a year, I finally decided I wanted to get my Master's in early childhood education. I really loved the little kids! 

I continued working at Head Start, which was challenging and rewarding. It was also exhausting, both mentally and physically, but ESPECIALLY physically. I worked in a building that had two floors, and my classroom was on the second one. As a part of the job, I had to eat breakfast and lunch with my students, which meant we had to go all the way to the basement to eat in one of the cafeterias. This meant I was going up and down four flights of stairs with children at least twice a day, however, I often went up and down way more than that. Seriously, I look back today and wonder how I actually survived the job. The stairs weren't the only thing making me tired, it was also being on my feet a lot, and well, just dealing with 18 little tykes every day! And some days they were just NOT GOOD!! LOL 

During my third year at the job, I started getting major respiratory illnesses. I had double pneumonia the first time, around Thanksgiving. Then I had bronchitis a few months later. It was when I had my third bout with something lung-related that my primary doctor told me to quit my job. I was 24 at the time. Who really thinks they'd retire at that age?? I had never even considered quitting, no matter what the job was doing to my health. If it wasn't for my doctor, who knows what would have happened to me! I really don't think my body could've tolerated that job any longer if I had just kept on working!

So, I stopped teaching. I wasn't sure if I should bother finishing my Master's degree, but I did anyway. And then that was that. What next? My dream had been to teach, and now I couldn't. I spent a very long time just trying to get my health back and wondering what in the world I should do next. I also was referred to the Cleveland Clinic in Ohio for a lung transplant evaluation. I started going in 2002, and a year later I was put on Tracleer. My first shipment included a flyer that opened up an entire new world to me with the link to the website for the Pulmonary Hypertension Association. I spent a week reading the site, crying at the posts on the Message Boards, because OH MY GOODNESS, THERE WERE OTHERS LIKE ME!!! I eventually checked out the chat rooms, and I was hooked! I "met" phriends, and connections were made. It was the most wonderful thing ever!

I am not exactly sure of the year, but I THINK it was 2005 when I was approached about starting a support group in my area. My first thought was "Oh, hell no." I could handle being in front of a group of children, no worries. But in front of a group of adults?? It petrified me. I really didn't believe I could do it. But I said I'd consider it, and I prayed. I prayed about it hard. God must have seen something in me that I couldn't, because he slapped a "YES" on my forehead and I decided sure, why not? I'll give it a try. It still scared me, but I'd try! And after finally getting things set up, I had my first meeting! It was a decent crowd of people, and everyone was really thankful that I had started something. I realized that must have meant they might have felt as alone as I had all the years I spent growing up with PH and not knowing that there were others like me. I got home from the meeting and cried, tears of happiness that I was able to not only help someone else, but help myself cope with the isolation this disease can bring. 

Since then, I have come to the conclusion that I AM still teaching. I may not be in a classroom, I may not be in front of a room of little kids, or big kids, but I am in front of others who want to know more about this disease and how to live with it, not in spite of it. I have "met" so many other PHers in the world wide web communities such as Facebook. I've become a chat room leader on the PHA's website, and a PHA mentor. I get random calls or emails from people sometimes wanting to know all about what the heck they were just diagnosed with, and how in the world to cope. I'd like to think that I'm helping all these people, because I certainly felt so alone once, and received so much support when I finally found a place where people could relate to what I've dealt with my entire life. I know my purpose in life had something to do with teaching others, I just had no idea that God had a different idea of what my classroom would be like. 

Monday, November 19, 2012

It's Personal - Part II

So what do you do with a child who has a disability? And what do you do with a child who may or may not live for very long? Well, you do what is most important: you love her and let her live life as best she can. I spent my childhood playing with my sisters (whom I affectionately call sistores), running around with them, but always taking breaks. My mom signed me up for dance lessons, but I only made it through one class before she realized I wasn't doing that great. So I took organ lessons. I joined the Girl Scouts, which was fairly easy for me to do. I did Art Wheels. I did what I could do to have some fun. I lived my life! Yes, there were many hard times. Yes, I very often got short of breath running around. Yes, I took a LOT of naps. And I still do! Yes, I got sick often.  But I learned my limits, pushed past them many times, but I did ok. And I think the biggest reason why I'm still here today is because of my parents, especially my mom, and my sistores. I love my family dearly, and they all tried their best to make sure I did what I was able to do, or at least to be there to watch.

Sunday, November 18, 2012

It's Personal - Part I

My personal PH journey began when I was diagnosed at 9 months old. After two trips to a free clinic to get my shots, and the same doctor at the clinic insisting something serious was wrong with my heart, my parents took me to a cardiologist at Buffalo Children's Hospital. I was immediately taken to the back despite the room full of parents waiting their turn to see the doctor. Apparently I looked a bit too blue. After many tests, including a right heart catherization, it was determined that I had a severe heart defect (atrioventricular canal), and pulmonary hypertension. This meant that I was born with both problems, and no one knew until 9 months later. The AV canal - which is an atrial septal defect (ASD) and a ventricular septal defect (VSD) - could not be repaired by the time it was found. My parents were pretty much told to take me home and love me the best they could, because it was unknown how much time I'd have here. I can't imagine what they must have felt being told this devastating news!!

Saturday, November 17, 2012

Where To Turn?

A person gets slammed with a diagnosis of PH, probably after months or even years of trying to figure out what is wrong with their body. What in the world do they do now?? Who do they talk to about it? Family and friends may try to understand, or may not even be supportive. Finding other people who also live with PH can help a "newbie" in so many ways. Many years ago, before the internet changed the world, it was rather hard meeting people with PH. Today, the world wide web can bring people together in chat rooms, message boards, and social networking sites.Websites, such as the PHA and PH Central, can also provide information on how to get in touch with a PHer in person, through support groups. A newly diagnosed PH patient does not have to feel so alone with their disease!

Friday, November 16, 2012

At Risk

Although PAH can be diagnosed in anyone regardless of age, race, or gender, there are certain risk factors that can make some people more likely to get the disease. These risk factors include:

-Family history
-Obesity and obstructive sleep apnea
-Other diseases
-Drugs and toxins

You can read more about these risk factors HERE!

Thursday, November 15, 2012

Does That Come With Sides?

All of the PAH medications come with side effects. Some people experience side effects for a little while, and then they don't deal with them any longer. Some people have side effects constantly. Side effects can include one or more of the following, depending on the medication(s) being taken:

-Low blood pressure
-Fluid retention
-Irregular heart rhythms
-Excessive bleeding
-Liver failure
-Blurry vision
-Loss of hearing
-Nasal congestion
-Muscle pain
-Jaw Pain
-Bone pain

Wednesday, November 14, 2012

Under The Skin

I talked about Remodulin yesterday as being an IV medication to treat PAH symptoms. Remodulin can also be administered subcutaneously, meaning, under the skin. Subq Remodulin works in the same way as IV and inhaled Remodulin, by relaxing the blood vessels to allow more blood to flow and carry oxygen around, which then allows the heart to pump easier. Subq Remodulin requires site changes every so often, and are usually put into the abdominal region. Subq Remodulin can be quite painful for most users.

Tuesday, November 13, 2012

IV Medications for PAH

The very first type of treatment available for PAH was Flolan (epoprostenol). Flolan has been considered the Gold Standard in PAH treatments for a very long time. It's an IV med that goes straight into the heart via catheter. It dilates the blood vessels and allows the right heart to work more efficiently in pumping the blood. Flolan has a very short half-life, which means the medication only lasts a few minutes in the bloodstream. A pump connected to the line helps to administer the med, and the dosage is adjusted according to the patient's  body weight in kilograms. Flolan must be kept cold, and ice packs are used all the time while using the med.

Another type of IV medication is Remodulin (treprostinil). It also helps to relax the blood vessels to allow for better circulation of the blood in the body. Remodulin is requires a catheter and a pump to administer the med, but it has a longer half-life than Flolan. It also does not require ice packs for usage.

Room temperature epoprostenol was approved in 2010, called Veletri. It does not require ice packs or refrigeration.

Monday, November 12, 2012

Inhale, Don't Exhale!

Currently, there are two inhaled medications for PAH. These are nothing like the asthma meds you may be familiar with!

*Ventavis (iloprost): When used, Ventavis causes direct vasodilation of the blood vessels in the lungs, meaning the blood vessels relax and open up to allow more blood flow through the vessels. Ventavis treatments are done around 6-9 times a day, depending on how the PH patient responds and feels.

*Tyvaso (treprostinil): Tyvaso works very much like Ventavis, in that it goes directly into the lungs through inhalation, and opens up the blood vessels to allow more blood through the vessels. Tyvaso is done in 4 separate treatments a day, spaced evenly apart.

Sunday, November 11, 2012

Oral Medications

There are currently 4 oral medications approved by the FDA to treat PAH symptoms.

*Tracleer (bosentan): Tracleer is an ERA, which stands for endothelin receptor antagonist. Endothelin causes the blood vessels to narrow. Tracleer blocks endothelin, which is produced in overabundance in PAH patients. This helps to reduce blood pressure in the lungs, and to improve activity level. Tracleer is taken twice a day, 12 hours apart. Tracleer requires monthly bloodwork to check for liver failure.

*Letairis (ambrisentan): Letairis is also an ERA, and also works very much in the same way as Tracleer does. It is taken once a day. Letairis does not require bloodwork, although some doctors may still want labs checked occasionally.

*Revatio (sildenafil): Revatio is a PDE5 inhibitor. This means that Revatio relaxes the blood vessels of the lungs to increase blood flow, making it easier for the heart to pump. Revatio is taken three times daily. Revatio is commonly know as Viagra!

*Adcirca (tadalafil): Adcirca is also a PDE5 inhibitor. It is also know as Cialis. The biggest difference from Revatio is that Revatio is taken three times daily, and Adcirca is only taken once a day.

Saturday, November 10, 2012

Conventional Drugs

Many PHers are on one or more of the following conventional drugs to treat symptoms:

Calcium Channel Blockers (CCBs) - These are oral meds which relax the muscles around blood vessels which allows better blood flow. CCBs can also help to regulate heart rates. CCBs are only effective in less than 10% of PH patients.

Digoxin - Digoxin can help the heart pump. It can also help regulate the electrical activity in the heart. It is an oral med taken once a day. I've been on this medication for over 35 years!!

Warfarin (Coumadin) - Warfarin is a blood thinner taken once a day. It must be carefully regulated, so bloodwork is required often. Warfarin can be affected by foods and other medications, so a person taking it must make sure they monitor what they eat and the other things they ingest closely. I was on Coumadin for at least 10 years, and finally stopped it last year to try a baby aspirin instead. I can tell you that I don't miss Coumadin at all!!! lol

Diuretics - These meds help treat heart failure and fluid retention. They are oral pills taken once or twice a day to help reduce the amount of fluid in the legs and/or abdomen.

Oxygen - Yes, oxygen is a medication! Low oxygen can cause the pulmonary vessels to constrict and may worsen PAH. Oxygen levels should be maintained at 90% or above in PAH patients, and can be done be using supplemental oxygen. UNLESS YOU'RE LIKE ME!! My congenital heart defect doesn't really allow me to be anywhere near 90%, even when I'm on a high liter flow of oxygen. My body has become accustomed to the low numbers, but I usually wear the oxygen anyway just because I know it's at least keeping my heart from working too hard!

Friday, November 09, 2012

Mmmmmm, Drugs

Back in 1975 when I was diagnosed with PH, there wasn't anything to cure it, nor anything to treat it. My parents weren't given too much hope, and I can't imagine what that must have been like for them to know that I could die from this crappy disease at any point in time, whether it would be within my first year, or 50 years later. Somehow I managed to live for 28 years before starting one of several meds that had been FDA-approved by that time (in 2003). Today there are 9 drugs available to treat the symptoms of PAH, but the fact remains that there still isn't a cure. YET!

The approved therapies for treating PAH symptoms are:
*Conventional Therapies
*Oral Treatments
*Inhaled Treatment Options
*IV Treatments
*Subcutaneous Treatment
*Lung Transplant

Thursday, November 08, 2012

Types of PH

There are a few types of PAH (pulmonary arterial hypertension):

Idiopathic PAH: The cause of PAH cannot be found.

Heritable PAH: Formerly known as familial or genetic PAH, this type can be inherited, and is relatively uncommon.

Associated PAH: PAH is associated with another disease or condition, such as connective tissue disease, congenital heart disease, chronic liver disease, HIV, drugs and toxins, and more.

CTEPH (chronic thromboembolic PH): PAH is a result of blood clots in the lungs. CTEPH is the only type of PAH that can POSSIBLY be cured by a surgery called pulmonary thromboendarterectomy (PTE), which removes the blood clots from the lungs.

My PAH is a result of congenital heart disease, so I am in the Associated PAH category. I was diagnosed with atrioventricular canal, which is a fancy way of saying I have 2 holes in my heart. Yippee!! The holes have never been repaired, so I've been living with both for 37 years (so far!).

Wednesday, November 07, 2012

Too Many Initials

PH = pulmonary hypertension: I use PH since it's easier to say or type, but it's just a general reference to pulmonary hypertension. 

PAH = pulmonary arterial hypertension: PAH is when the right side of the heart needs to work harder to get blood pumped through the narrowed arteries in the lungs. If the right side needs to work harder, it becomes enlarged, and can eventually fail.

PVH = pulmonary venous hypertension: PVH is PH due to left heart disease, like systolic dysfunction, diastolic dysfunction, and valvular disease. 

Tuesday, November 06, 2012

Testing, 1,2,3

The right heart catherization mentioned in my previous post is the Gold Standard to diagnosis of pulmonary hypertension. But while it is very important, there are other tests given to help determine what may be causing the PH, if anything. These tests include:

Blood tests - An arterial blood gas (abg) is totally not a fun test at all. It's a blood draw, but the blood is taken from the artery, not the vein. It hurts!! But what it tests is the amount of oxygen in the blood. If there isn't enough, the patient may need to be put on supplemental oxygen. Other blood tests check for liver and kidney function, thyroid problems, collagen vascular disease, and any signs of infections or HIV.

Chest Xrays - The chest xray can determine if the right ventricle or pulmonary arteries are enlarged. It also can show if someone has scarring or emphysema.

Electrocardiogram - This test checks the electrical impulses of the heart.

Pulmonary Function Tests - PFTs measure how much air your lungs can hold. They also show how much air is moving in and out of the lungs, and the lungs' ability to exchange oxygen.

Exercise Tolerance Test - Also known as the 6 minute walk, this test is supposed to determine how well a patient can handle exercise. This is the one test that gets repeated with almost every visit to the PH specialist. This test is also one that I find many of my phriends can't stand, including myself. lol

Nuclear Scan - A V/Q scan checks for blood clots in the lungs.

Monday, November 05, 2012

Doctor Doctor

A pulmonologist or cardiologist are doctors who may see only a handful of PH patients in their practice in their career. Some have no idea how to treat PH. Some might think it's not that big of a deal and not offer treatment at all, just monitoring. When a newly diagnosed PH patient comes onto the message boards or into the chat room, the #1 recommendation given to them is FIND A PH SPECIALIST!! What's the difference? A PH specialist IS a pulmonologist or a cardiologist who either sees PH patients exclusively, or the majority of their patients are PHers. It is very important to see a PH specialist since they understand better what to do to help a PHer manage their symptoms.

My own personal experience involves my pediatric cardiologist. Since my PH is due to congenital heart disease, I followed a pediatric cardio for most of my life, up to my early 20s. Dr. G. was wonderful, and I really loved him! But when my symptoms started worsening in my early 20s, he gave me inhalers to try. I look back at this today and realize that he really may not have fully been aware of the symptoms of PH. I didn't even know anything about PH at that time, only that I had it. I didn't have any clues as to what it really meant when the inhalers didn't work, my symptoms continued to worsen, and I was referred by my general practitioner to the Cleveland Clinic for a lung transplant evaluation. I went several times before I was put on my first PH med, and received a flyer in the shipment of that med for the PH Association. That's when I began building my knowledge of everything pulmonary hypertension, and why I now insist that a person see a PH specialist so they get on the right path to treatment!!

Sunday, November 04, 2012

Right Heart Catherization (Sounds Fun, Right??)

I can't tell you the number of people who have come into PH chat, or posted on the PH message boards, who say they have been diagnosed with PH after have an echo done. While an echo is used often to try to figure out what's going on, an echo really never definitively diagnoses PH. The echo is an estimate. The numbers on an echo can be waaaaaay off compared to the actual numbers measured during the only test that truly DOES diagnosis PH: the right heart catherization!

The right heart catherization (RHC) is an invasive procedure. There is a tube inserted into the heart to measure pressures in the heart and lungs. This tube can be inserted through the groin, neck, or even the wrist nowadays (although I'm not sure how many hospitals are using this method, it's pretty new!). I hear most people can ask for some "happy juice" during the test, since usually the patient is not put to sleep, and it can be a little unnerving to go through. If the pressures in the pulmonary artery measure anything above 25mmHg, then the person does indeed have pulmonary hypertension.

Saturday, November 03, 2012

The OTHER Hypertension

As part of having pulmonary hypertension, I wear oxygen. I've been wearing it for the past 10 years at least. When I am out and about, I notice people looking at me, but I'm at the point where I don't care anymore. It's a part of who I am, and it gives me the ability to actually BE out and about! 

I have gotten my share of random strangers coming up to me asking why I'm on oxygen. Many of them are older, some are also wearing oxygen, others are children. When I am asked why I'm on oxygen, I tell them I have pulmonary hypertension. I'd say about 99% of the people say, "Oh, I have high blood pressure, too!" 

Well, that may be true, BUT, pulmonary hypertension has nothing to do with the high blood pressure everyone is familiar with! It is the OTHER hypertension. PH is high blood pressure in the lungs. If it is left untreated, it will eventually cause right-sided heart failure. 

Oh, and by the way, my regular blood pressure is just fine, thank you!

Friday, November 02, 2012

Sometimes It's PH!

Shortness of breath.

Extreme fatigue.


Chest pain.

Swelling of the arms, legs, ankles, or abdomen (edema).

These are symptoms of so many conditions. Doctors usually consider asthma, COPD, and being overweight right off the bat when a patient complains of these symptoms.


Sometimes it's PH!! Doctors really need to start including PH as part of the list of conditions to consider when a patient is having these symptoms! To find out more about this new awareness campaign that the PHA started this year, especially geared toward medical professionals, please go HERE!!

Thursday, November 01, 2012

It's November!! You Know What That Means!!

PH Awareness Month has begun! And while I have so much information to share about PH and what it is: the symptoms, the treatments, dealing with it on a daily basis, etc, I'm taking the time today to remember my phriends (friends with PH) who have sadly passed away from this crappy disease.

I became a part of the PH community when I started my first-ever treatment back in 2003. I didn't know there was a website available, and only discovered it after opening my first shipment of Tracleer. Every shipment includes a lot of paperwork, and a flyer for the PH Association was included. I logged on and began at least a week-long cry fest! The tears were of shock that there were others out there like me. They were tears of joy that there were others out there like me!! I read the message boards for days, every single message, and I started to post when I felt comfortable enough to share my story. It was an amazing experience, to finally be able to relate to others.

Not too long after that, I thought I'd try out the live PH chat rooms. I became hooked. It was so cool to share in real time experiences I've dealt with all my life. I will never forget the two ladies who made me feel so welcome in the chat room: Tanya (Seaspritemo) and Brenda (GeorgiaBrenda). Tanya was funny as hell. She made me laugh every time I was in the room, and eventually the few times I talked to her on the phone. She was a fighter, or a phighter,and had many problems to deal with on top of her PH. She passed away a few years ago, and I miss her spunk! And then there was Brenda. She had a quiet kindness about her, always had a "smile" in the chat room, no matter how she was feeling. She led the Wednesday night chats for a long time. About 4 years ago now, she missed several chats, which was really not like her. I tried calling the number she had given me awhile before that, but I always got an answering machine. Finally, per the suggestion of another phriend, I did some investigating on the White Pages, and found a neighbor's number. The gentleman at the other end was very kind, but also very sad to tell me that Brenda had passed away a few weeks before. I was so sad to hear that she was gone, too. I wanted to continue her Wednesday night tradition, so I asked if I could host her chats, which I continue to do to this day. 

So today I'm especially remembering these two ladies who made me feel so welcome in the PH community via the chat rooms. I have an unfortunately huge list of phriends who have gone before Tanya and Brenda, and ever since then, and I will always remember them as well. But Tanya and Brenda were the welcoming committee to the beginning of my online PH journey, and I just can't ever forget them. 

Tuesday, October 30, 2012

Winds, Lightbulbs, And Awareness

Yesterday, everyone along the East coast were prepared to be hit by Hurricane Sandy, especially areas of New Jersey and New York, which ended up being a couple of the worst hit places. Phriends from around the country started asking me how I was making out as early as yesterday morning, when nothing was happening. To be honest, I was expecting some big winds and nasty weather, but it wasn't going to be anything like those living right near the coast. We did have lots of rain here, and the winds were high, but we've had gustier winds than what was whipping up last night. The pictures from the storm have been jaw-dropping, and some of them just sad. Flooding in so many areas, tons of cars damaged, and buildings. Millions of people are without power. There have been some deaths, as well. There are a few phriends I haven't heard from since last night, so I'm praying they are safe and ok!!

Last night, I was frustrated with my indoor antenna because the reception wasn't too great. I kept moving everything around, and then googled some tips on how to make reception better. Of course, many articles were saying an outdoor antenna was a better option. So, as I sat there trying to watch The Voice, I had a "lightbulb moment." In my living room, there are two cables located on two different walls. The one cable I had used when I had actual cable, and then changed to the Dish. The other cable has just been sitting there. It occurred to me that I must have an antenna on the roof!!

Umm, HELLO??????  I've only lived here, what, almost 14 YEARS???? LOL

Sooooo, after The Voice was over, I shut everything off. I unhooked the indoor antenna, and hooked up the mystery cable. I turned the tv back on, and let it scan for channels. VOILA! I had 21!! I truly did have an antenna on the roof!!

I will be returning the indoor antenna as soon as I can, and just tell them what a dork I am that I didn't realize I had one outside the house. lol

And in final news, PH Awareness month is two days away!! November 1st, I will start using Facebook and my blog as an awareness tool to promote awareness of this crappy disease! I hope to also write regular posts in between, so sometimes I might have a couple posts in one day. I will also be putting my display board up at two hospitals, so I guess I actually need to MAKE it!! I have much of the supplies I want to use, so it shouldn't be too hard! I'll be posting pictures of it as soon as I'm done! I'm excited to be spreading the word about PH in so many different ways!!

Wednesday, October 24, 2012

Halloween Pics!

This post is to mainly see if the Blogger app can actually post more than one picture, which I see can! Thank you to the person who suggested using it!!

This post also is to show off the lovely artwork created by myself and my niece and nephew on Saturday night when I babysat! They are 7 and 5 years old respectively, and pretty artistic! I was told by both of them that my picture would warrant me having my own art studio. Gotta love kids and their wild imaginations! LOL

Can you guess which one is mine?? :)

What A Crock!

Several years ago, I used some points from a survey site I joined to get my first ever crock pot. It was a large crock pot, and my first meal from it was lasagna. I didn't know you could make lasagna in the crock pot!! Anyway, I used it several more times, but the size of it kept me from using it more often. I mean, I'm only one person trying to eat a ton of leftovers, and not everything freezes well!

So a couple years ago, Mandy's crock pot bit the bullet. Since it was near my birthday, I offered to give her mine if she'd buy me a 4qt crock pot. She agreed! The smaller size has been perfect for me!

This is the time of year when I love using the crock pot the most. Soups are the best, but so are stews. And although I usually despise dealing with bones and skin on a chicken (which is why I only buy boneless skinless chicken breasts), a whole chicken in there comes out SO GOOD!! See how cute it looks in there?? It literally falls apart when done, so it's pretty easy to deal with.And then I can make homemade chicken broth!

So, if anyone out there is considering a crock pot, I'd highly recommend it!! There are tons of recipes out there. It's simple to just throw ingredients together and get a delicious dinner by the evening!

Saturday, October 20, 2012

I'm Free!!

When I moved into my apartment back in 1999 (whoa, still can't believe it's been that long ago!), I signed up with the local cable company for tv service. There really wasn't many other options at that time. Years later, I decided to try one of the satellite dish companies. I know some people think satellite is not as reliable, and you lose the signal with a drop of rain. But honestly, in all the time I had it, I think I lost the signal a handful of times. So I thought it was fine for me!

Last month, I decided to join this century and upgrade my big old hunk of tv to a flat screen. I really like it, but I wasn't getting the full effect since I wasn't paying for HD programming. I wasn't even sure if I wanted to. But I was also thinking long and hard about ditching satellite altogether and using an antenna to get the local stations, which is what I watch the most anyway!

That is precisely what I did today. I bought an antenna at Target, paying a little more than I wanted to, but oh well! I set it up after dinner, and scanned for channels. I got 8 at first, but when I saw that it hadn't picked up NBC, I tried again. I can't live without NBC! The 2nd time I got 10 channels, including 2 NBCs. Ok, better than none!!! So the next step? Cancelling my satellite service!

I admit to being nervous about this step. Why? It wasn't about the argument I was expecting from the representative on the other end. It was more of letting go of paid programming that I've been used to all my life!! lol But really, why keep paying for channels I watch all the time that I can get for free by antenna?? Makes no sense to me, or my wallet!

So I made the call, and got all ready to defend my choice. But I didn't have to really. The lady I spoke with was almost like fine, whatever! Within 10 minutes, I was satellite free! One bill down the drain! And within the next couple months or so, I hope to be able to save enough for an internet streaming box for another way to watch tv and movies. All I have to do is pay for the box and I'm good to go! And if I can figure out how to hook my laptop to the tv, maybe I can watch things that way, too!

Tuesday, October 16, 2012


Today was a pretty busy day for me, and I'm exhausted!  I'm waiting for my wonderful heated mattress pad to warm up so I can go to bed rather shortly!! This is what my day consisted of:

1. Going to pulmonary rehab, after picking up my mom since she also had an appointment at the same time at the hospital.

2. Dropping my mom back off at her house about an hour later.

3. Rushing through a very quick lunch and a 2 minute clothing change at my house all within 15 minutes.

4. Driving 45 minutes to get to an ear doctor appointment, stopping for a tall decaf caramel macchiato at Starbucks on the way (yum yum!!).

5. Waiting 35 minutes in the tiny little room to see the doctor when I WAS ON TIME TO SEE HIM. Grrr, that always irritates me!

6. Going to A.C. Moore to buy everything in the store buy a trifold display, which I happened to get half off with a coupon!!

7. Browsing Old Navy in search of something to use my $25 gift card on, and walking out with nothing.

8. Driving back to Niagara Falls to run some more errands, including dropping off a package at UPS, and loading up on canned food for Mittens (I'm trying to get him off dry food, it's going to take a loooooooong time).

9. Walking around Walmart buying everything in the store buying the things I had on my list, and the things I did not.

10. Popping into Big Lots in hopes of finding a TV antenna, and instead walking out of there with boxes of Christmas ornaments for my new tree!!

11. Getting home way past my dinner time (and Mittens'), unpacking everything, making a quick dinner and crashing on the couch for the rest of the night!!

While I'm mostly glad that I am able to go out and about by myself for very long periods of time like I was today, the tiredness from it can sometimes get to me. I am exhausted, but not as much as I thought I'd be. Hmmm, that doesn't make sense, does it?? I guess maybe I am too tired to think and make reasonable sentences!!  Well anyway, the thought of a nice, comfy warm bed waiting for me to snuggle into is very appealing!!! So that is where I'm headed right about now!!

Friday, October 12, 2012


My last post from a couple days ago was in regards to a blog giveaway by Sunshine! She was giving away an adorable owl she created with her own two hands and some beautiful yarn. Well, today she announced the winner, and I totally froze when I read that it was yours truly!! I can't believe it! I'm really excited!!

You can see the announcement by going HERE!!

And I encourage you to be a follower of her blog, because she always has wonderful posts, and really beautiful pictures of the area where she lives!!

Thank you, Sunshine!! I'll definitely take a picture of my lovely new owl whenever she gets here! Yes, I have decided the owl is a she!!  hehe!

Wednesday, October 10, 2012

Giveaway Participation!

I've been reading a blog by a lovely lady named Sunshine for quite some time now! She loves to do little prize giveaways every once in awhile! I did win a great cookbook from her some time ago, and a sweet handmade panda bear (totally adorable), and I'll be honest, I'm a little selfish right now with the fact that I'd love to win what's up for grabs in her current blog giveaway!! LOL! I'll give you a little hint about why...her prize would go nicely with a new mug I received for my birthday last month that I totally adore and use quite often!! Here it is!

Isn't it a hoot??? LOL!!

So, any WHOOOOOOOO (I couldn't resist!!), Sunshine is giving away a cute handmade Amigurumi Owl! If you'd like to see it, please go here! You can also enter to win if you'd like! Don't just hang out at that post, read her entire blog if you can! She's a pretty upbeat person who likes to talk about life on the Cayman Islands, which totally makes me jealous sometimes!! 

Monday, October 08, 2012

Planning For Awareness

Next month is Pulmonary Hypertension Awareness month. In the last few years, I've been using my blog and Facebook to write about PH and everything that comes with it. From the diagnosis, to the types, to the tests involved to get that diagnosis, to the medications now available, you name it, I've shared it all! I plan to do the same again this year, but I'm also trying my best to do something outside the world of the internet. That is why I'm so very excited to share the news that I will be putting up two displays (so far!) at the two local hospitals in the Niagara Falls area!!  Thursday afternoon I had emailed the woman who schedules my PH support group meetings at St. Mary's, asking if she knew who I would ask about setting up a display in their lobby. The next morning I received an email from another person in the hospital, and I eventually talked to him in the phone about a time frame for a display. He is giving me almost two weeks! From November 9-21, I'll have some information available for people! YES!! So, while I was thinking about it, I asked a friend who works at Memorial Hospital if she knew who I could speak with there about a display. She gave me a name, I gave him a call, and this morning I got a call back from a woman who is letting me set up for three days! Hey, three is better than none!!! I can even sit at the table for whatever time I want to answer questions if I'd like! I'm just really happy to be able to share some information with people about PH!! So now I need to make a trifold display, and order some brochures to leave at the tables!! Lots to do before next month!

Saturday, October 06, 2012

Ooooh , Technology

A week ago, I walked out of Walmart with a brand new cellphone. I had been able to upgrade my phone, and knew which one I wanted, but I had been pricing the phone at various stores and websites before settling with the brick-and-mortar Walmart. The Samsung Galaxy SIII is now mine, and I'm still trying to get used to it! It's been a little different than my Droid Incredible. Some things are easier (like turning off the mobile data with one touch), and some things are driving me nuts (the keyboard is annoying!!). But really, I have been enjoying the upgrade!

My favorite part of the phone is the camera. I can take a picture of something in front of me, and then take a picture of myself by touching a button. The camera lens turns around inside to face me instead of me having to turn the phone around. How cool is that??? I take waaaay too many profile pics of myself for Facebook, and delete so many of them before I settle on one I like, because I can't see what I look like while trying to take the picture. Now I can with the backward lens! Whoo hoo!

With the new phone, I decided to see what Instagram was all about, since it's the latest craze. It's pretty neat! I've mostly taken pictures of Mittens so far. Easy subject! Here's one I love!

I'm typing this post on my phone, so I'm not exactly sure where the picture will show up when I post it. I also can't add more than one picture! Does anyone use an app for blogging that's better than Blogaway?? Anyway, hopefully I can learn to do even more with this phone. It's really neat to think how much a phone can become more than just an object to talk on! :-)

Friday, October 05, 2012

Meeting Time

I've spent the past week trying to get ready for my PH support group meeting tomorrow afternoon. I wish the weather around here would allow us to have meetings every month, or even every other month. I used to have them in May/October. May didn't always work so well because May is a busy month for people! Graduations, weddings, Mother's Day, you name it. The turnout for those meetings were often low, and we aren't a very large group to begin with. So this past year, I tried April/July/October. April was great! July I had to cancel. So tomorrow's meeting will be the last one for this year, and there will be a total of 13 of us. Not bad, really. But considering that the speaker is traveling all the way from the West Coast, and returning the same day tomorrow, I really wish we had more people coming!! I really hope he doesn't mind coming all this way like that!! I'm incredibly thankful that he is, however! He is going to talk about the PH Association, and what it does for people living with PH. I thought it was such an important topic, because I've been a member of the PHA for 9 years, and it's an incredibly vital part of trying to make people around the country, and even the world, more aware of PH! So, I'm hoping it's a great meeting regardless of the size of the group!

Sunday, September 30, 2012

Badly Breathing

The last couple days have been really bad for me in terms of my PH symptoms. I still get shortness of breath (SOB), but it's not as often, and not terribly bothersome. But yesterday and today were awful. I didn't even have to be doing anything to be SOB. I'm thinking the weather is playing a big role, even though both days weren't too bad out. It was nice and sunny, a little cool out of the sun, but not really humid. So who knows?? All I know is that at K.'s yesterday, I kinda squashed his plans of going to the park nearby to walk a short trail to see if we could find any buck. I was having a hard time just walking around my apartment earlier, so I really wasn't sure what a walk outside was going to be like, and I didn't care to find out. He didn't seem to mind, just continued to work on some stuff that I knew he'd want to get done anyway. I'm hoping I didn't disappoint him, but if I did, he never said so.

I got my flu shot yesterday morning, and while I don't think it contributed to my PH symptoms, the owie in my left arm didn't help any. Even now it hurts if I rub the area where I was stabbed! Ok, I wasn't really stabbed with the needle. The nurse was rather nice. So I'm vaccinated for another year. I'm hoping this winter will be kind to me like last winter. I didn't get sick, knock on wood!! It's a relief not to be sick. Having PH plus a cold just means I'll take at least twice as long getting better since I'm limited on what cold meds I'm allowed to be on. Decongestants are a huge no-no, even though I didn't know that when I was a kid and I took it for at least 20 years!! Here's to another germ-free winter!!

I am off to bed early tonight, since I don't really think I slept too well at K.'s last night. I was having a little bit of a hard time breathing since I only had one pillow, and I usually sleep on two here, or wherever I go. Plus when I finally drifted off to sleep, I woke abruptly who knows how long later to K. telling me I kicked him, and completely not remembering doing so. lol I asked him about it this morning and he didn't even remember talking to me! So who knows what happened last night, but I need to get to bed so I can make up for the interrupted sleep last night! lol

Tuesday, September 25, 2012

One-Hit Wonder

As I was driving home from pulmonary rehab today, I heard on one of the radio stations that it was National One-Hit Wonder Day! How funny, I've never heard of that before! So, I thought I would do a fun little post about artists who only had one major hit in their career. Now, there are soooooo many one-hit wonder hits that I decided to focus on the decade of music that I seem to absolutely love the most, and that is the 90s! I'm picking one song from each year of the 90s! Here we go!

1990: Biz Markie - Just A Friend

I can't tell you how much I STILL love this song!! I have it on my Sony mp3 player, and when it comes on, I just sing along!!

1991: Mark Mark And The Funky Bunch - Good Vibrations

This song brings me back to my high school days!

1992: Charles & Eddie - Would I Lie To You

I'll be honest, I forgot that I used to love this song!! Had I not seen it on the list I found on the internet, I would still not realize who the heck sang this song. Quite obviously, they didn't last too long!!

1993: The Proclaimers - I'm Gonna Be (500 Miles)

I still seriously can't stand this song. It was sooo overplayed when it was out, that I can't listen to more than a minute of it after all these years!!

1994: US3 - Cantaloop (Flip Fantasia)

This song reminds me of going to a dinner with my boyfriend at the time, and trying to get him to dance. It didn't work. lol

1995: The Rembrandts - I'll Be There For You

This song, of course, became huge because of the extremely popular tv show, Friends. Friends was one of my favorites, and I still watch the repeats whenever I see them on!

1996: Primitive Radio Gods - Standing Outside A Broken Phonebooth With Money In My Hand

I still absolutely love this song, but it has to be one of the most ridiculously long song titles ever!! lol

1997: Aqua - Barbie Girl

I'm really not sure how this song became a hit. I admit I liked it the first few times I heard it, but then I grew tired of it!

1998: K-Ci & JoJo - All My Life

I seriously think anyone who got married in 1998 used this for their first dance. It was soooo popular!!

1999: Len - Steal My Sunshine

The biggest hit I can remember from 1999 is this one! It did get annoying after awhile, but I have to admit, at least it was a happy little ditty!!

Well, these are the songs that were one-hit wonders in the 90s. I tried to be a bit diverse, instead of picking out all the dance songs! This was a rather fun post to do. I'll have to do  more like it!!

Sunday, September 23, 2012


It's officially the season of Fall, and I'm officially sad. Don't get me wrong, there are things about Fall I actually do enjoy. 

1.) I love the changing colors of the trees, especially when they are a gorgeous red, my favorite color! (I took these pics a couple years ago, the colors aren't changing quite that fast here yet! I was just using them for demonstration! lol)

2.) Fall means soup and stew season can begin!! It's so hard to eat a delicious bowl of hot soup when it's 80 degrees out! The crisp Fall temps make it much easier to create some sort of soup and enjoy it for dinners and lunches. Mmmmm, I'm wishing I had ingredients to make a pot right now!!! lol

3.) Fall also brings in the start of what I like to call, Bath Season. I'm usually so cold at night before I go to bed when the temps start to get chillier. I end up taking a bath before bed, so that I can warm up, get a bit sleepy, and then just crawl into bed all nice and toasty so I can sleep! 

What I don't like about Fall? Mostly, it's the cooler temps, especially in the evenings and the mornings!! It means that I don't wear shorts or skirts anymore when the air feels only in the 60s. It means that I can't really wear a tshirt or tank top without wearing a sweater over it, and even then, sometimes I'm just not warm enough! Worst of all, it means.......WINTER IS COMING!! BOOOOO!! I'm not ready for:

1.) Winter coats

2.) Winter hats - Ok, I love this hat, which K. bought for me last December! lol

3.) Winter gloves
4.) SNOW!!

Soooo, although there will probably be some nice days left before the above white mess shows up around here, I'll most likely be layered in winter clothing already to just stay somewhat warm. I wish I could afford a move to a warmer area, but that isn't happening! You'd think I'd learn how to adapt by now since I've lived here for 37 years, but noooo. Every year I feel like I'm a bigger wuss when it comes to the change in season!! 

Wednesday, September 19, 2012

One Year

About this time a year ago tonight, I was enjoying dinner with a man I had been chatting with for a couple  months online, and eventually on the phone. K. suggested meeting in person for a few weeks, and we finally did so September 19th. He was nice enough to say he'd come out my way, since he lives 30 minutes away. I waited for him outside the restaurant I suggested, and when I finally saw him walk around the corner, I felt rather at ease. It's funny, in the year since we've been dating, I don't think there's been any time that I haven't felt uncomfortable with him. I'm glad we met that night, and I'm even happier that he's been wanting to do things since. I haven't had too much luck with men, mainly because many are a bit intimidated with my health situation. I can understand that in some ways. Even K. hasn't been totally certain about it. I told him at one point that I can't tell anything about my future with my health since even _I_ don't even know what to expect. But he's been really understanding about the oxygen, and it makes me feel good. We've had a pretty nice year together, and I'm hoping it continues! :)


I hear so many people complain about getting older. Of course, I don't hear this from children or even teenagers. They seem oblivious to aging until they hit a certain point in their life when they realize that all they are doing is adding up the years. But the complaints about growing old sort of make me sad. Do people realize how blessed they are to actually BE older? Sure, I know aging isn't fun. The body loses physical abilities, the mind starts losing thoughts and words, aches and pains can become a frequent thing. I know this because I experience all of these things from time to time. I try not to complain too much, because I am THANKFUL for still being here.

This past Monday (the 17th), I turned 37. This is such a blessing for me. I wasn't given much hope about my future when I was diagnosed at 9 months old with PH and congenital heart disease. The guess from the doctors was that I'd live anywhere from a couple years to maybe 50. I'll be quite honest, I think if any of the doctors who had seen me as a baby saw me today, they would be very shocked to know I'm doing pretty well at the moment! I know I still have bad days or periods of time when I struggle with my health, but overall, it's nothing compared to when I was growing up trying to survive on no medications. So, I am incredibly thankful for every year I get. People look at me oddly when I say "Bring on 40!! Heck, I can't wait til I'm 50!" It just means that I can be here for another year with the people who mean so much to me in my life...even if it does eventually mean that one day I'll be walking around with a cane and hearing aids with lovely white hair!!

Tuesday, September 11, 2012


It's been almost a month since I last posted. I thought of a great post a few weeks ago, and then just never got around to writing it. I'm not too sure what the heck's gotten into me, but I haven't felt like writing lately. But hopefully I'll get back into it soon!!

Wednesday, August 15, 2012

Summer Fly-By

Summer is almost over, and it's making me really sad. I live for this time of year! I'm able to be outside much of the time (except for the really stupidly humid days which make me feel like I'm confined in a cold prison cell which is really my air conditioned apartment), and there are so many things to do! I've really enjoyed this summer so much, because I've done so many things with K. Oh, and I love summer because I can wear skirts and be barefoot almost all of the time!!! So it's depressing to me that it's coming to a close very shortly, and soon winter will be here. Although last winter was pretty mild compared to the standards for this area, winter is winter is winter, and I just don't like it one bit!! I'm hoping the winter weather will be tame again, because last winter actually allowed me to be out more than I thought I'd be. And I didn't have to wear long underwear on a constant basis!!! LOL!

Friday, August 10, 2012

Playing Tourist In My Own Backyard

K.'s birthday was last month, and I told him I wanted to take him on the Maid of the Mist ride down at the Falls. He mentioned months and months ago how he'd never been on it, and of course, the light bulb in my head went off! So Tuesday evening when were on the phone, I mentioned that the weather was going to be nice yesterday and then not so much the rest of the week. He decided to take a half day off of work, and came here so I could take him downtown. I was very excited! I have been on the Maid of the Mist ride twice, but the last time I was on it was 18 years ago! So I was excited for both of us to be going!

I drove downtown and found a parking spot that was a bit of a walk from where we needed to go. I just didn't want to pay for the parking lots that surrounded so much of the area down there, and besides, I needed to walk! We got near the Observation Tower, which is where you have to go to take the long elevator down to the dock for the boat. Here are some views from the top of the Tower!

After taking the elevator down, you go near the ramps that lead to the Maid of the Mist boat, and you are handed a lovely blue Maid of the Mist poncho/raincoat that you wear while on the tour. Of course, I did see a few people who never put it on, but I knew how wet we'd be getting, so I put mine on!

Shortly after donning the raincoat, we began to board the boat!

Our particular boat ride wasn't totally jam-packed like it can be, but I think it may have just been the time of day and the fact we were on it in the middle of the week. We went up to the top of it, and found a nice spot to stand. Not too long after, we were off! Here are some shots of the American Falls! My camera ended up getting quite waterlogged since we were getting so wet from the mist and the water from the Falls, so some pics look a little blurry. Sorry about that, but there wasn't much I could do with the power of nature! lol

The American Falls really got us wet, I mean to the point where I couldn't open my eyes for a few minutes because water was dripping down my face!! But after we passed them, things started to get better. And then we were facing the Horseshoe Falls!! 

The boat actually stays right at the Horseshoe Falls for about 5 minutes or so, and it's just the most amazing feeling ever being so close to such a powerful display of nature. I'm sure I am not the first to ever feel this way, but whenever I am at the Falls, I just feel such a closeness to God. I am in awe of the beauty and the force of the Falls, and I know that the only way the Falls could be there is because of Him. To me, it's awe-inspiring!

Anyway, the boat eventually turned around and started heading back toward the dock. We passed by the American Falls again, but didn't get as wet this time. I think we weren't as close to it! But we did pass by another boat that was heading toward the Horseshoe Falls, and you realize exactly how close you get to the Falls by seeing the boat!
We got back to the dock and waited for most of the passengers to get off the boat before we went down the stairs and exited, too. It was a great ride, and such a wonderful experience! K. really loved it, and he was so surprised at how close we got to the Horseshoe Falls. I reminded him that I did say we get up close and personal!! lol  We walked around at the base of the Observation Tower, where there's a very long set of stairs you can climb to get right next to the American Falls. I didn't have the energy to go up all the steps, but I told K. to do so since we were right there! And he did! He said it was so much more windier and wetter than when we went by it on the boat. He was pretty amazed! 

After drying off a bit, and removing our raincoats (we both decided to keep them for later use!), we started going back into the Observation Tower to take the elevator back up. But before we did, K. took this very cool shot of the tower from below!
We walked around the park for a bit longer before heading back to the car. I also drove to Goat Island, another area to view the Falls, but we didn't pay for parking (I can't justify $10, I wish the locals didn't have to pay that much!!). I did find one area near what's called Three Sisters Island that I could park for 20 minutes, so we did that and explored for a short time before heading home! Here are some random pics from the rest of our experience in playing tourists!! lol