Saturday, May 23, 2009

PH Walk/Run for Research- A Victory !


The Piedmont PH support group had its annual Walk/Run for PH Research on May 17TH.
This is my group and doing a walk is something I have wanted to do for a long time.
I did it ! I walked 5k for PH Research .I am so excited even though it was a week ago.We had good support with runners and walkers alike and it was raining all day.We were able to raise 10,000.00 which was our goal.All in all it was a victorious day for everyone.The walk was not as easy as I hoped.There were steep hills that wanted to stop me.With patience and perseverance I prevailed !!!
Awareness and Advocacy for our disease is part of my daily life.I have been busy contacting our Congress members about the new bill H.R. 1030.Hopefully we will have our first official meeting with a Congressman this month.I am excited and full of hope.
I have hope that this bill will pass and we will have more support for research and awareness.I have hope for myself.I just had my 21St anniversary with this illness.At one time I never thought I would live this long.Today there is hope for me,for you and everyone else in this great big world we live in.I will continue with the awareness and advocacy work I do.In the meantime and in between time I will walk !
Our support group has big plans this year.We are having a golf tournament in September and possibly a yard sale with proceeds going to PHA Conference Scholarships.We have our work cut out for us but we are a great team.With a fantastic leader.Cindy I love ya girly !!! You rock .
I pray that this Memorial Day Weekend is full of joy for all.
Peace

Tuesday, March 31, 2009

This is the day which the LORD hath made; we will rejoice and be glad in it.

The title of today's entry is one of my favorite passages from the Bible.
I am so grateful to be alive!
My mom is feeling so much better.She is out of the hospital and recovering at home.She has decided to not move back to Connecticut.Her decision had us all a little concerned but the truth is my mom loves her independence.She is not ready to "have to live with someone". Not yet ,not today.It was an odd situation that brought her decision about and it's way to long to get into on here.I have faith .She is being taken looked after.
As for me,well it's my birthday today.I don't hide my age.I am 46 and I am proud to say so.I don't feel like I am getting older physically and that really is a blessing.The true miracle is that I have lived to see this age.Having PH has given me to opportunity to see miracles everyday . I am the miracle today,,woohoo !!!
I was diagnosed when I was 24 and was told I wouldn't live more than 2 years without a transplant.Well here I am 20 + years later and I am ALIVE & KICKING.
Amen

Friday, February 27, 2009

My Mom

I have been at the hospital every day for the past two weeks.My mom has been very ill.It's hard to see this active ,lively woman in such pain.She is incredibly strong and I admire how she has handled her hospital stay. She can no longer live alone.So once she heals my dear mum will be moving to Connecticut.She will no longer be an hour away. This is what needs to be done.I am not well enough to take care of her and admitting that has really gotten me down. She wants me to be happy with my life and not to feel guilty or have any regrets.I told her I am happy with my life.Even though I have had PH for so many years,the gifts I have received are countless.It has been a blessing in disguise.The only regret I have is not having the strength to care for me mum.
I have been home for 2 days now and have only been able to talk to her on the phone.I am taking my doctors orders to rest.A hospital stay for me is not an option.So the phone is our connection for today.I will have to get used to that .I will not be able to just drive over for lunch or meet her and go shopping.Our visits will have to be well planned for everyone.My brother is a great person and she will be with him and his family.My nephew is happy that his "abuelita" -that's grand mom in Spanish will be with him.My prayer today is for my mom,and for me to be easier on myself .Self forgiveness is so much harder than forgiving others.
Peace be with all of you my phabulous phfriends !

Monday, January 19, 2009

It's Been a Long Time Huh ?

I know I have not kept up with my blog.I have been busy with life ,PH and all that it entails.
I wanted to share something that I learned over this past Christmas & New Year .It is something that I read and it really hit home.It's called Lesson in Contentment .
Here are four steps to develop contentment in your life.
1. Stop comparing yourself to others. When you compare your life with someone else’s, the only place it can lead is toward discontentment. There will always be people who appear to be better off than you, but you don’t know their real circumstances.
I recall counseling a husband many years ago, and he said he wished his wife could be more like so-and-so, and he named a woman in our congregation. What he didn’t know is that the woman was a functioning alcoholic causing incredible heartache and stress for her family and for her husband.
That’s why the Bible teaches it is unwise to compare (2 Corinthians 10:12).
2. Be grateful for who you are and what you have. Learning to be content requires that you stop any “when and then” thinking – “When I am ___________, then I’ll be happy.” (You fill in the blank.)
The reason we fall into this trap is that we may actually be content for a little while but it won’t last. But, more than likely, someone else or something else will come along and drain the contentment from your life.
But listen, you are unique. God created you to be like nobody else, so why would you want to be anyone else. God is perfect, and you were his perfect choice to be you. Understanding that is a huge step toward being content with your life.
And then look at all the things God has given you. So often we allow what we don’t have to so dominate our focus that we forget the many wonderful things we already have, not only material blessing, but far more important things, such as family and friends.
3. Give yourself to others. If you will begin giving yourself to others, sharing what things you do have, sharing your time and your talents, you will find yourself learning to be content. Helping others will give you an appreciation for what you have and who you are, but more importantly, you will find yourself growing content. Why? Because God designed us to serve and share with others, and until we do that, we will feel great discontent.
4. Focus on things with eternal value. The real secret to becoming content is to focus on the things that have eternal value. It may be a familiar teaching to you, but Jesus said we should store up our treasures in heaven, and not on earth “where moth and rust destroy, and where thieves break in and steal” (Matthew 6:19-21 NIV).
As I read this on December 31st.I realized that all of his applies to Ph'ers and the struggle we have with our limitations or desires to do as much or more than others.I know that we are all very special.We all help each other and we all do what we can.Individually we may not be able to do a whole lot but put us together and we can achieve anything.Our support groups ,advocacy and awareness is our way of "giving of ourselves".I can honestly say I Do Not know of one PH'er that does not give !
So to all of my Phamily.I love you,trust you and look forward to growing with you this year.
"lesson in contentment" by Rick Warren.

Wednesday, December 17, 2008

Scrooge

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 !!!

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 !!!

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 !