Monday, April 16, 2012

Words to live by -- or make you think

I’m a thinker. Sometimes I may think too much and I’m sure other times I don’t think enough, either or here are some thoughts that may get you to thinking as well.

Having a chronic illness is not a pleasant thing. Some of us are “hit” harder than others. Some of us dwell too much on the negative and that it’s a life threatening disease; you must remember with proper treatment pulmonary hypertension is a doable disease. Being or thinking negative thoughts can possibly make things worse for us. Being anxious is not a good thing when you are sick; so shake it off and always take a step up.

A few years ago, this was sent to me. I don’t know who wrote it but it is an inspiration. One of those priceless moments.

One day a farmer's donkey fell down into a large well. The animal cried piteously for hours as the farmer looked down into the well and tried to figure out what to do.

Finally, he decided that the animal was way too old, and the well was useless and just needed to be covered up anyway; it just wasn't worth it to retrieve the old donkey.

He invited all his neighbors to come over and help him. They each grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and loudly cried.
Then, to everyone's amazement he got very quiet.

A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw. With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up on the dirt.

As the farmer's neighbors continued to shovel dirt on top of the animal.... he would shake it off and take a step up. Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off!

Life is going to shovel dirt on you, all kinds of dirt. The trick to getting out of the well is to shake it off and take a step up each time.

Each of our troubles is a steppingstone. We can get out of the deepest wells just by not stopping and never giving up!

Shake it off and always take a step up.

And don't forget to smile -- it is contagious.

Saturday, April 14, 2012


As a child my Aunt bought me (from a yard sale) the book and records of Cinderella and one of my favorite songs from it was: A Dream is a Wish Your Heat Makes

A dream is a wish your heart makes
when you're fast asleep.
In dreams you will lose your heartaches,
whatever you wish for you keep.

Have faith in your dreams and someday,
your rainbow will come smiling through.
No matter how your heart is grieving,
if you keep on believing
the dream that you wish will come true.

I think of that now when I have this chronic disease, the dastardly disease pulmonary hypertension. My dream of course, would not to have it at all. Then, well I’m not sure it’s a dream, but I would like to get up from a chair and not have to worry about carrying my pouch – sometimes I wear it around my wasit but then if I do, it’s difficult to sit with it on so it’s just easier for me to carry it – some days it feels like it weighs 20 lbs when in fact it’s only about 4+ lbs. The pouch contains the pump and I “stash” a few other things in it as well, pen, paper etc.

I have an IV infusion medication. A tube goes into my chest and then follows the vein right into my heart. I am attached to this 24/7/365. I mix my medicine every other day and attach it to the pump that is attached to the IV line. “Have faith in your dreams and someday….” Someday maybe I will have another medication that won’t be attached to me. An oral medication would be great. Or maybe with all the research going on they will find a cure. Whoo Hoo on that one.

I think about the dreams that others mention. A trip to a favorite place, an extended vacation. Doing great at their job, finding romance :o}. There are all sorts of dreams. I think about the words to "The Impossible Dream"
To dream ... the impossible dream ...
To fight ... the unbeatable foe ...
To bear ... with unbearable sorrow ...
To run ... where the brave dare not go ...
To right ... the unrightable wrong ...
To love ... pure and chaste from afar ...
To try ... when your arms are too weary ...
To reach ... the unreachable star ...

And I think of Susan Boyle with her amazing voice that brings tears to my eyes and chills up my spine. She had a dream… and she gives me hope. She is an amazing inspiration to me and the words to "her" song; like I said, chills. One of the best inspirational videos ever - Susan Boyle – Britain’s Got Talent 2009

Remember to smile, it’s contagious.

Friday, April 13, 2012

Did you know…..

Friday the 13th. Variously believed to be a lucky or an unlucky day. Every year has at least one Friday the 13th, but never more than three. In numerology, the number twelve is considered the number of completeness, as reflected in the twelve months of the year, twelve hours of the clock, twelve gods of Olympus, twelve tribes of Israel, twelve Apostles of Jesus, the 12 successors of Muhammad in Shia Islam, etc., whereas the number thirteen was considered irregular, transgressing this completeness.

Friday has been considered an unlucky day at least since the 14th century's The Canterbury Tales, and many other professions have regarded Friday as an unlucky day to undertake journeys, begin new projects or deploy releases in production. Black Friday has been associated with stock market crashes and other disasters since the 1800s. And other traditions have the unlucky days as Tuesday the 13th or Friday the 17th. So depending upon which side of the ocean you are from, depends on which is a lucky or unlucky day.

So there you have it. It’s either lucky or unlucky. I prefer the lucky part myself. A lot of gratitude can change that attitude and today I was asked to list 10 things I couldn’t live without. With what I have been through, that just “ain’t gonna happen”.

I believe in being positive or having a positive attitude, I believe in being grateful for what I do have as simple as that may sound. I joke with phriends that I used to be rich and famous, now I’m poor an infamous. Having a life threatening dastardly disease just takes the “wind” away from you sometimes. So if we think positive and do “what the doctor orders” we should be on the right track to an almost “normal” as we can make it, life. Having a disability or an overwhelming disease can be life changing and life altering. Our routine is now compromised; although many have been known to get back into their grove; been able to go back to work; to live with their family. I have not been that lucky; but I’m doing and that’s what is important.

I have always considered 13 as a lucky number for me, just one of those things when I hear unlucky or a negative thought, I do my best to change it or turn it around. Sometimes it works, sometimes it doesn’t.

Remember to smile – it’s contagious
Try it, you’ll like it :o}

Thursday, April 12, 2012

This morning I looked in the mirror

This morning I looked in the mirror as I usually do; and I saw a face that I don’t always like to see – a pale face with lips bordering on being that deep red or bluish in color. This is not a good sign – to me it means something is wrong. I’m not sure if it means an increase in medicine is needed or an increase in oxygen. We have been trying to lower the oxygen so I really don’t think it is that. I guess I should write to my doctor – dah.

The morning started as is typical for me and as the day progressed it went from bad to worse. Something that is not a good thing when you are SICK… and it’s not having a cold sick but a having a life threatening disease sick. I have pulmonary arterial hypertension. A disease of the lungs and heart. If you are not on proper treatment or medication, you can and may be very short of breath; have a bluish tint to your skin; chest pains or heart palpitations; swelling of the ankles, legs and belly; dizziness or even pass out (not usually all of those symptoms at one time but possibly several) – typical symptoms for several heart or lung related diseases. I guess that is why it so difficult to diagnose.

Tom came over a little early today and I went to the kitchen to start the “we have left over ham from Easter and it’s time to make pea soup”, soup. I got out an onion, went to the counter and almost screamed – ANTS were on my counter. YUCK, YUCK and YUCK!!!! I got a paper towel and my spray cleaner and went at it. Cleaned the whole counter off and then noticed some more ANTS climbing up the side where the sink is YUCK, YUCK and YUCK again!!!! Then I noticed those critters on the floor, I was being invaded. I was spraying and wiping and got out the vacuum cleaner (Tom used that) and away we went. I checked under the sink and found some ant traps (but no ants) and strategically placed the traps on the floor and at the edge of the sink. I thought we finally had things under control so I started with the soup.

I diced the onion and put it in the pot to get them that light golden brown and I worked on the carrots, again dicing them. Dicing takes time and also energy and I looked over by the sink – guess what ~ MORE ANTS!!!!! I got out the vacuum cleaner again and attacked them, then I figured as long as I have it out I might as well do the dining room and living room… I put my IV Remodulin pouch over my head so it wouldn’t fall off my shoulder and away I went. I cranked up the 02 a notch and started on those two rooms… Tom sat and watched TV or tried with all the added noise. I finally finished and went back to the kitchen…. AND MORE ANTS.

The vacuum cleaner was in use again, for some reason they were heading toward the doorway that leads to the dining room, creeping along the floor at the edge of my braided rug. We lifted up the rug and no signs of the little beast there; so apparently they were using that as a guide. But where were they going? I have a small “door mat” at the kitchen door and no little beasts there either and I thought after we looked under that one that that rug has seen better days and needs to be replaced. Here I am being invaded by ants and I think about a door mat. We decided to head for the local hardware store; buy a door mat, some more ant traps and some ant spray. Off we went.

We bought what was needed and headed back to my home. MORE ANTS!!! But not as many as with previous trips to the kitchen. Out comes the vacuum cleaner once again and actually I left it in the kitchen the last time I used it. Tom sprayed in the basement, just in case. I put out a couple more ant traps and I’m keeping my fingers crossed – trying to get those toes crossed too that they will finally be under control.

So the counters were washed and disinfected, the floor was also washed (guess I forgot to mention that one), the rug was vacuumed several times and the soup was made and is very tasty. I haven’t been to the kitchen in about an hour and I’m not sure I want to go there. Tom said before he left he will probably itch all evening thinking about all those ants – I said how do you think I’ll feel. :o(

Well, I went back in to look at that face in the mirror and with my exceptionally busy workout today, and it’s still pale!

Always remember to smile – it’s contagious.

Tuesday, April 10, 2012

Keep Calm and Carry On

Good words to live by. Not always as easy as one may think especially when you have a life threatening, progressive disease, like pulmonary hypertension (boo siss). When first diagnosed, many are scared out of their wits but with proper diagnosis and treatment it is a very doable disease. So let us Keep Calm.

So the thought being. Keep Calm and Carry On. Life can get back to being almost normal. Many when they do get on those proper meds can go back to work or pretty much their life in general; the life they had before diagnosis. The only difference being, they are now on a medication.

Keeping Calm is easy enough if you think about it. They have what they call pursed lip breathing, it helps to calm and is just pretty good not too bad either – in general. You take a deep breath in to maybe a count of say 5 or 6 – then “blow” it out slowing through your lips as if you were blowing out a candle and to the count of 7 to 10. Good exercise for the lungs and relaxes the body as an extra bonus.

Pursed lip breathing is also good when you do exercises if you start to feel like you’re a little sob (that’s short of breath – thank you very much). Again, it helps relax your body on a whole and gets you back to doing what you need to do – to carry on.

When we are calm, we can carry on. Knowing how to pace yourself or knowing what your limits are is also important in both keeping calm and carrying on. Some with a disability know their limits; some find those limits the hard way. Either or, try to keep them in mind.

And always remember to smile -- it's contagious

Monday, April 9, 2012

Spring has sprung

That is a phun saying – spring has sprung, the grass has riz, I wonder where the daises is? The bird is on de wing, ain’t that absurd, I always thought the wing was on de bird.

Today I went out to the house (where Tom lives and I used to) for Easter dinner. I was focused on the drive out and making sure I had what I needed to bring. It’s a family dinner and we all bring something; Tom cooks the ham or whatever we may be having for our holiday dinner and the rest of us bring the fixins. Menu: ham, mashed potatoes, sweet potatoes, corn, salad, deviled eggs, pickled eggs, rolls and for dessert 3 pies. Since I have to moosh my food for another 2 weeks, I had the potatoes (both) and a deviled egg. I must admit it isn’t a pleasant thing to moosh food in general and pies especially. They always tell you eye appeal is important when you eat. Well, my thought is, it all goes to the same place and I’m sure it isn’t pretty looking when it gets to where it’s going, so I’m just helping it along.

It was a great dinner, the table was set for 10 and our daughter and family of 5 from IN couldn’t make it. I don’t get to see everyone as often as Tom does. He lives closer to the other kids and of course he can get out more often than I do. (He sometimes stops on his way back from my place; they live just down the road from him.) Great conversation and several times there were 3 or 4 conversations going on at the same time… it was phunny to pick up on one, lose part of another and then try to figure out who was talking about what. Did tickle my phunny bone and it was great. Talking is great exercise for the lungs, ya know.

After dinner we sat around and talked some more. Then dessert. Either apple pie, peach pie or pumpkin pie (Tom’s favorite). I had a small slice of each which was the equivalent of about one normal slice and mashed them down good. Dollop of whippy cream added a special touch.

Naturally, I ate too much and when I do that I have difficulty breathing. Having pulmonary hypertension I have to be careful about filling my belly too full. Too much fluid, too much food; all that pushes against your diaphragm which in turn pushes against your heart and lungs. Some do not have that problem, but I sure do and it is very, very frustrating. What’s that term – portion control??? I try very hard not to overeat; with a family gathering, it’s hard. Even though we don’t go overboard on what is served I think just having extra pholks around, one tends to eat a little more and is was sooo good.

On the drive home I noticed the “green” that is now spewing forth on the trees, bushes; nature showing what she is in general. Some of the “buds” were an apple green in color, some a little deeper green, others had a red tint and some even had white blossoms. Spring has sprung.
The sky was full of those big puffy clouds (Cumulus clouds) that look like cotton candy and reminds me of summer; in the distance I noticed “grey” sky which is not always a good sign and it is supposed to rain tomorrow.

It was a peaceful drive home with lots of sites to see; the trees, the bushes, flowers in bloom, well some of them. Spring is an adventure each and every year; it’s one of my favorite seasons. A new birth, a new beginning.

It all did make me smile and smiles are contagious.
(I guess I forgot to click post > yesterday)

Thursday, April 5, 2012

Light Houses

Lighthouses mark dangerous coastlines, hazardous shoals, reefs, and also mark safe entries to harbors, to give hope in a dangerous situation. They act as guideposts for ships at night or in a storm. They are a beacon of hope.

That’s what those with pulmonary hypertension need – a beacon of hope; hope for a cure; hope for a better life; to see light shining through in times of turmoil. Our ph specialists will guide us through those storms of uncertainties and lead us to that beacon of hope; whether it be with proper treatment, more research or advanced awareness. Unfortunately, too many doctors still do not know or understand what pulmonary hypertension is and it can be present in all ages from infant to seniors. It does not discriminate with being a male or female or ethnic background but is most common in woman of child bearing years.

Symptoms of PH may include: Shortness of breath with minimal exertion, chest pain, unusual fatigue, a dry cough, edema, heart palpitations, fainting and dizzy spells.

The disease described as "progressive and fatal", causes blood vessels in the lungs to thicken, restricting blood flow therefore making the right side of the heart overwork and may lead to heart failure. It can be a silent killer but can also be treatable and therefore prolong your life. Studies show that most patients experience a one to two year delay between the onset of symptoms and a confirmed diagnosis of PH.

Symptoms range in severity and a given patient may not have all of the symptoms. PH may be secondary to other contributing diseases or there can be no known cause. Untreated, however, PH can have a worse prognosis than many forms of cancer. Did you know lung disease is the fourth leading cause of death in the U.S., responsible for one of every seven deaths?

People with PH before realizing what they have, often go to a doctor complaining of shortness of breath and unusual fatigue. If they are overweight or getting a bit older, their doctors may tell them to lose some weight and get more exercise.

That is why it is often misdiagnosed or overlooked as a lung disorder or as a complication of a large number of respiratory or cardiac disease disorders.

Remember, with proper treatment you can maintain a somewhat normal life and many have been known to go back to their regular routine. It is scary but it is also doable. It is a lung / heart disease so we need to take care of both.

Remember to smile - they are contagious
And focus on that light.

Wednesday, April 4, 2012

I write because….

I write because I hope that somewhere along the way I will be able to help someone – someone who may be newly diagnosed with having the dastardly disease or someone with the dastardly disease and is having a not so good day. Either way, I will listen and encourage that sharing; to let them know others do understand.

Pulmonary hypertension is a rare life threatening disease of both the heart and lungs… no cure as yet but now several “therapies” are available and several are in trial – there is hope. Hope for a cure.

Each of us who have this disease is unique – no two of us seem to be the same. Some may have it secondary to another disease some they may have not found out why but deep down there will be a why. There always is. Some of us are on multiple therapies - some on only one. Unique???

Many doctors are doing research, not only to find a cure but also the why and what can be used to slow or stop the progression. Did I mention it is also a progressive disease? Well it is.

With the therapies that are out there now, this disease is very doable. The key is to being properly diagnosed. Too many times it is mis-diagnosed; symptoms mimic heart problems other lung issues such as asthma – and several others. Then there are some of those doctors who will say “it’s mild, not to worry”. Well, dah, it’s a progressive disease – very doable but it is progressive and if it can be treated at the mild stage it will just take that much longer for the progression to progress. Makes sense to me.

Being a Support Group leader I receive calls from pholks, usually newly diagnosed who are scared and I can’t blame them. Again, I mention with the treatments/therapies available, it is very doable. You will have a new normal but you can do many things you did before – many are able to go back to work, some have to readjust their lives. Remember doable.

We are never guaranteed an easy life and as in climbing a mountain, sometimes we have to go down in order to reach the top. Life can be a challenge but also a joy. We need to focus on those joyous moments.

Remember to smile – it is contagious.

Monday, April 2, 2012

Talk is cheap

When I was in high school I used to save “Quotable Quotes” from the Sunday paper and the one I remember the most and has been a lesson in life is: Talk is cheap – I’m sure many of you have heard that but have you heard the rest of it. Talk is cheap but you can’t buy it back. I learned that lesson the hard way.

Again, while in high school a friend told me something about another friend that I believed to be true so I also passed it on. We both found out the hard way that the statement wasn’t true and we hurt another friend’s feelings. At this point I don’t even remember what it was about but I do remember the results and how something said so innocently could spread like wild-fire.

From that point on I tried my best to be sure what I said wasn’t something that I would regret saying or more importantly, something I could not buy back.

Now, with having a life threatening and rare disease it is important to remember when you say something about it, especially to a newbie, it should be something that is understandable and not something to fear although it is a scary disease. Pulmonary Hypertension – rare, progressive, life threatening and no cure as yet. Then I also remember there are several therapies that help retard or slow the progression of the disease. It is doable with proper treatment and we are all so different with what will work for us.

Remember to smile – it’s contagious  another good quote

Sunday, April 1, 2012

Sharing and Stories

A couple of weeks ago I met a phriend. One of those phriends you have emailed, spoken to on the phone but have never met. Well, we decided to meet and she came up to my neck of the woods from the Pittsburgh area.

It was a “let’s meet for coffee” thing. I live near a major outlet mall and I thought meeting there would be convenient for both of us. Easy access for her from the Interstate and it’s only 3 miles from where I live – what more could one ask for.

Now that I think about it, it was St. Pat’s Day. I emailed and said I would be wearing a hot pink sweater – figuring everyone else would be in green. Something to keep in mind when you meet for the first time; wearing something that stands out. I also mentioned I would be the one with a hose in her nose and a tube in her….. hmmm chest. <<< that’s an inside joke for those who have pulmonary hypertension and are on an IV Medication. :o}

We are both involved with pulmonary hypertension, I being a patient and support group leader and she being a caregiver. She told me about herself and her concerns and interests and I told her about me – now that I think about it, a lot about me and I’m usually the listener.

We talked about what’s on the horizon for PH – actually that’s the title for our next support group meeting which is toward the end of this month. We talked about coping about sharing joys, fears and concerns. You name it, I betcha we talked about it and I won’t go into specifics as it would be too long and I would probably wear my fingers out typing it all. But if I would I could place it in a time capsule and take it out in a year or so and see if my thoughts/concerns would be answered – continued research to find a cure, continued awareness; there are still too many doctors who don’t understand the seriousness of this disease. That pretty much hits the nail on the head.

We shared our stories and had tears of joy or laughter at times and also those tears of sorrow that can come from pain, be it physical or emotional; that pain that can afflict someone with a rare and life threatening disease such as pulmonary hypertension – the Dastardly Disease; the pain and emotions a caregiver has to endure as well. They also have very emotional needs. What would that time capsule reveal as to their concerns?

We spent almost two hours chatting away and ended on a happy note – those are the best to end on. I had a great time and I believe she did as well. I am looking forward to our next “let’s meet for coffee”.

Always remember to smile – it’s contagious