I will start anew
I will make amends and I will make quite certain that the story ends ,
on a note of hope
on a strong amen
and I'll thank the world and remember when I was able to begin again!
My favorite Christmas Story and favorite quote !
I am going to watch my scrooge now and I know I will feel the gratitude I always feel after
watching the movie.It's a great story of transformation,renewal and hope for the future .
AMEN !!!
Wednesday, December 17, 2008
Sunday, December 7, 2008
Christmas Time is Here
I know I haven't posted for a few days.I have been busy getting ready for Christmas.I am still writing out cards and getting the wrapping done.All should be set tomorrow.We were going to decorate today but neither one of us was really feeling up to it.It was cold here and the thought of being out in this weather was not appealing.
My support group leader and I have been talking about New Year's resolutions for our support group.There is alot we want to do and all of it has to do with awareness in one way or another.Since I am the advocacy chair I am already making an agenda of where I would like us to start i the new year with the new congress.We shall see.
That's all folks !!!
My support group leader and I have been talking about New Year's resolutions for our support group.There is alot we want to do and all of it has to do with awareness in one way or another.Since I am the advocacy chair I am already making an agenda of where I would like us to start i the new year with the new congress.We shall see.
That's all folks !!!
Monday, December 1, 2008
Awareness Month is Over but Awareness Goes On
Now that November is officially over.I am thrilled to say that many ,many ph'ers had great success .PH was in the news,newspapers,blogs ,websites,chat rooms,Capitol Hill.It's amazing to me that so many of us that are ill can achieve so much.We are such a strong-both mentally and spiritually-group of people.It really is astonishing.I am proud to be a part of this wonderful group of go-getter's.
What's next? Awareness and Advocacy.H.R. 6568 did not pass this year.I am already making an agenda for meetings with reps and senators in 2009.I have also talked to a couple of the support group members about meeting with our new Governor.Time will tell.So we march forward,together hand in hand,in peace and love for each other.With hope now leading us into action.We will all see changes made in the area of Pulmonary Hypertension.Science is taking us into new frontiers and our spirits are letting us go along.Oh the miracles that I know will happen.I am excited about the future for me,for you and for those that will find out they have PH in the future.They will have an even better chance....Thank God for that !
What's next? Awareness and Advocacy.H.R. 6568 did not pass this year.I am already making an agenda for meetings with reps and senators in 2009.I have also talked to a couple of the support group members about meeting with our new Governor.Time will tell.So we march forward,together hand in hand,in peace and love for each other.With hope now leading us into action.We will all see changes made in the area of Pulmonary Hypertension.Science is taking us into new frontiers and our spirits are letting us go along.Oh the miracles that I know will happen.I am excited about the future for me,for you and for those that will find out they have PH in the future.They will have an even better chance....Thank God for that !
Friday, November 28, 2008
Attitude of Gratitude
Today I am grateful for Life ! The miracle of waking up to see another day is a wondrous happening.
I woke up early this morning ,had my coffee ,took my meds and started baking.Two pumpkin pies are baking as I write this and the smell is almost intoxicating.I have more to do and I am sure I will over do it.My back and neck are starting to hurt.Just for today they will not impede my day.
I am making a small turkey with all the fixings tomorrow.It will be a very small affair for my mom,Dale and his dad and myself.I am grateful that I can do this.Despite the pain.
Having and attitude of gratitude often makes my day go smoothly.Don't get me wrong I am not always a "happy camper" but I do try to stay positive.
My attitude can make me or break me.That decision is totally up to me.It's called free will.I can choose to be miserable even when the most beautiful things are happening or I can choose to find the miracle that exist in my life that day.I believe in miracles.I believe that God in heaven gives me something special everyday.What I choose to do with it is up to me.That's free will baby !
Today I live,I breathe,I laugh,I try to dance,I bake ,I smile ..I have loving,caring people in my life .See that -six miracles right there and that's just the beginning.
Pulmonary Hypertension has played a major role in this attitude.I used to take things for granted.Not anymore.PH keeps things in perspective.It is a constant reminder of how to take care of myself or when I have over done it. So as hard as this illness is at times-it gives me the attitude of gratitude.
Peace be with you today and always
(((((((hugs)))))
I woke up early this morning ,had my coffee ,took my meds and started baking.Two pumpkin pies are baking as I write this and the smell is almost intoxicating.I have more to do and I am sure I will over do it.My back and neck are starting to hurt.Just for today they will not impede my day.
I am making a small turkey with all the fixings tomorrow.It will be a very small affair for my mom,Dale and his dad and myself.I am grateful that I can do this.Despite the pain.
Having and attitude of gratitude often makes my day go smoothly.Don't get me wrong I am not always a "happy camper" but I do try to stay positive.
My attitude can make me or break me.That decision is totally up to me.It's called free will.I can choose to be miserable even when the most beautiful things are happening or I can choose to find the miracle that exist in my life that day.I believe in miracles.I believe that God in heaven gives me something special everyday.What I choose to do with it is up to me.That's free will baby !
Today I live,I breathe,I laugh,I try to dance,I bake ,I smile ..I have loving,caring people in my life .See that -six miracles right there and that's just the beginning.
Pulmonary Hypertension has played a major role in this attitude.I used to take things for granted.Not anymore.PH keeps things in perspective.It is a constant reminder of how to take care of myself or when I have over done it. So as hard as this illness is at times-it gives me the attitude of gratitude.
Peace be with you today and always
(((((((hugs)))))
Wednesday, November 26, 2008
PH Awareness in the Newspaper
Well this is the last of the awareness efforts that I have done..So far anyway.
This is an article that was written in the local newspaper.I sent this reporter a ton of information about PAH.We spoke a few times on the phone and then finally the day before I left for Washington D.C,we had and interview that lasted almost 2 hours.She asked a lot of questions,that I answered to the best of my ability,and she took about 8 pages of notes.
I think she did a fantastic job.The article is well written and you can tell she read what I sent her and she listened closely.I wanted to be able to involve a few people from my support group but it didn't work out that way. So here is the link:
http://www.the-dispatch.com/article/20081125/ARTICLES/811250301/1009/living?Title=Woman_wants_to_raise_awareness_of_pulmonary_hypertension_
I don't know how to make tiny url's so please be patient as I learn.You can leave a comment at the paper if you wish or leave me one.I hope you enjoy.
If every PH'er was able to get even a small article done in their area .Awareness of this illness and all that we go through would boom.Just a thought.
I know I started this in time for PH Awareness month but the reality is that awareness is an every day thing we have to do.We need to teach others.We need let other patients out there that are not connected know they are not alone.We need to continue learning.We need help for ourselves with PH.We can do this I know we can !
This is an article that was written in the local newspaper.I sent this reporter a ton of information about PAH.We spoke a few times on the phone and then finally the day before I left for Washington D.C,we had and interview that lasted almost 2 hours.She asked a lot of questions,that I answered to the best of my ability,and she took about 8 pages of notes.
I think she did a fantastic job.The article is well written and you can tell she read what I sent her and she listened closely.I wanted to be able to involve a few people from my support group but it didn't work out that way. So here is the link:
http://www.the-dispatch.com/article/20081125/ARTICLES/811250301/1009/living?Title=Woman_wants_to_raise_awareness_of_pulmonary_hypertension_
I don't know how to make tiny url's so please be patient as I learn.You can leave a comment at the paper if you wish or leave me one.I hope you enjoy.
If every PH'er was able to get even a small article done in their area .Awareness of this illness and all that we go through would boom.Just a thought.
I know I started this in time for PH Awareness month but the reality is that awareness is an every day thing we have to do.We need to teach others.We need let other patients out there that are not connected know they are not alone.We need to continue learning.We need help for ourselves with PH.We can do this I know we can !
Monday, November 24, 2008
Lobby Day-Mission Accomplished
As you know I went to Washington D.C. to be part of "lobby day" for PAH.There were six of us that went together.Cindy (support group leader),Tonya(co-leader)Medeta,Sharee,Meg from South Carolina and myself.We drove up in a van and it was a long trip.We all wanted to eat and needed bathroom breaks at different times.It took us 9 hours there and about the same to get back. I can honestly say I don't know if I will go again next year with the same set up.All in all we had great conversations,we laughed and got to know each other better.So it turned out to be a good thing.
As for lobby day itself.It was fun,hectic and exhausting !We went to the luncheon.Rino from PHA spoke.Then Congressman Brady spoke for a few minutes.Congresswoman Capps was not able to be there. Dr.Park spoke giving a rather quick and educating synopsis of PH.One of the students there was our own Tonya's granddaughter.She shared what it was like to have a ph'er in the family.She was adorable and did a great job.Another patient Donna Pederson spoke after her .Her story was compelling.She is definitely a strong warrior woman.
Our group had 2 main things to do.We needed to stop by Elizabeth Dole's office to thank her .When we met with her this past summer she had agreed to take our bill H.R. 6568 to the Senate.She did not get re-elected so our thanking her was a priority.She wasn't in her office but her manager sat with us and listened to what we had to say and assured us he would let her know we were to thank her.
Then it was literally off to the races.We were set up for a photo shoot with our other senator Richard Burr and the students from one of our schools.Well we were told to be on the senate building steps @ 2Pm.We were there but no one else was.We then found out they were taking the photos on the steps of the capitol building across the street and the Senator was ready to leave. We hustled as best we could to get there and we did it !! A little short of breath but a great picture was taken of Cindy,Tonya ,Senator Burr and myself..phew !!! It was cold and windy-we felt every bit of it.
We were also given tickets to go sit in the Senate Gallery to watch everyone in action.The line through security was too long and it was outside.I already had icicles forming on my face so we opted to go shopping in the gift shop instead.So much more fun ..lol
I picked up some goodies for my honey and myself and then it was time to get on the bus and head back to PHA.
What a day.I met so many people.I saw some of the most beautiful architecture in these buildings and I got to shop,,woohoo.Most importantly we did what we set out to do.
Mission Accomplished !
As for lobby day itself.It was fun,hectic and exhausting !We went to the luncheon.Rino from PHA spoke.Then Congressman Brady spoke for a few minutes.Congresswoman Capps was not able to be there. Dr.Park spoke giving a rather quick and educating synopsis of PH.One of the students there was our own Tonya's granddaughter.She shared what it was like to have a ph'er in the family.She was adorable and did a great job.Another patient Donna Pederson spoke after her .Her story was compelling.She is definitely a strong warrior woman.
Our group had 2 main things to do.We needed to stop by Elizabeth Dole's office to thank her .When we met with her this past summer she had agreed to take our bill H.R. 6568 to the Senate.She did not get re-elected so our thanking her was a priority.She wasn't in her office but her manager sat with us and listened to what we had to say and assured us he would let her know we were to thank her.
Then it was literally off to the races.We were set up for a photo shoot with our other senator Richard Burr and the students from one of our schools.Well we were told to be on the senate building steps @ 2Pm.We were there but no one else was.We then found out they were taking the photos on the steps of the capitol building across the street and the Senator was ready to leave. We hustled as best we could to get there and we did it !! A little short of breath but a great picture was taken of Cindy,Tonya ,Senator Burr and myself..phew !!! It was cold and windy-we felt every bit of it.
We were also given tickets to go sit in the Senate Gallery to watch everyone in action.The line through security was too long and it was outside.I already had icicles forming on my face so we opted to go shopping in the gift shop instead.So much more fun ..lol
I picked up some goodies for my honey and myself and then it was time to get on the bus and head back to PHA.
What a day.I met so many people.I saw some of the most beautiful architecture in these buildings and I got to shop,,woohoo.Most importantly we did what we set out to do.
Mission Accomplished !
Sunday, November 23, 2008
PH Awareness -Something my group has done !
I know I have been hinting at my support groups awareness activities,well here is one we did on Wednesday before we left to go to the congressional luncheon.We were interviewed by Fox News here in NC .It was shown on Wednesday evening and of course we couldn't see it because we were on a road trip.We had watchers that called us and told us about the report.Everyone thought the news did a great job. Here is the link to see it on the website for fox news.
http://www.myfoxwghp.com/myfox/pages/Home/Detail;jsessionid=A1B1F84284EDE108DEAF9AC01DA28EB1?contentId=7902481&version=1&locale=EN-US&layoutCode=VSTY&pageId=1.1.1&sflg=1
I know I need to write about the lobby day at D.C.We had a great time,but I am still recouping from the trip.So I will update that tomorrow.Have a great Sunday !
(((((hugs))))
http://www.myfoxwghp.com/myfox/pages/Home/Detail;jsessionid=A1B1F84284EDE108DEAF9AC01DA28EB1?contentId=7902481&version=1&locale=EN-US&layoutCode=VSTY&pageId=1.1.1&sflg=1
I know I need to write about the lobby day at D.C.We had a great time,but I am still recouping from the trip.So I will update that tomorrow.Have a great Sunday !
(((((hugs))))
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