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Showing posts from 2012

Have You Ever?

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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 Letchworth 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, th…

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 …

Creativity

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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!?

My Little Man

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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!

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

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!

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

Is NOT

High blood pressure

*****

Pulmonary hypertension

Is NOT

Asthma

*****

Pulmonary hypertension

Is NOT

COPD

*****

Pulmonary hypertension

Is NOT

Obesity

*****

Pulmonary hypertension

Is NOT

Sleep apnea

*****

Pulmonary hypertension

IS

High blood pressure in the lungs

*****

Pulmonary hypertension

IS

Life-threatening if not treated

*****

Pulmonary hypertension

IS

Diagnosed by right heart cath

*****

Pulmonary hypertension

IS

Treatable

*****

Pulmonary hypertension

IS

Life changing


Eisen-what??

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 hyp…

Spoons Anyone?

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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 …

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.

YET.

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 he…

Giving Thanks

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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 be…

Experiment

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. O…

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 …

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 …

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 t…

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!

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
-Gender
-Pregnancy
-Altitude
-Other diseases
-Drugs and toxins

You can read more about these risk factors HERE!

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:

-Dizziness
-Low blood pressure
-Fluid retention
-Irregular heart rhythms
-Nausea
-Excessive bleeding
-Dehydration
-Nosebleeds
-Liver failure
-Blurry vision
-Loss of hearing
-Headaches
-Anemia
-Nasal congestion
-Sinusitis
-Flushing
-Muscle pain
-Heartburn
-Diarrhea
-Jaw Pain
-Bone pain
-Rashes
-Itching
-Swelling

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.

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 ep…

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.

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): …

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 hel…

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

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!).

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.

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 …

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 t…

Right Heart Catherization (Sounds Fun, Right??)

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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 pulmon…

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!

Sometimes It's PH!

Shortness of breath.

Extreme fatigue.

Dizziness.

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.

BUT!!

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!!

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

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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 …

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 …

Halloween Pics!

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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! LOLCan you guess which one is mine?? :)


What A Crock!

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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 t…

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 …

T.I.R.E.D.

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 Niag…

Winning!

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!

Giveaway Participation!

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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 someti…

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…

Ooooh , Technology

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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…

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…

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…

One-Hit Wonder

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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, the…

Changes

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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 slee…

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_ …

Aging

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 thin…

Absence

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!!

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!

Playing Tourist In My Own Backyard

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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 fro…