Wednesday, December 17, 2008
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 .
Sunday, December 7, 2008
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
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
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
Wednesday, November 26, 2008
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:
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
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
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 !
Tuesday, November 18, 2008
I had an interview today with a reporter for The Dispatch ,a newspaper in the area that will be featuring a special on PAH next week.This is something I have been working on for the past month and the interview finally happened.Now I just need to wait and see how it turns out.I will get extra copies for my family and I will post the link for the website on here as soon as it is on line.
I am really excited because tomorrow we leave for Washington D.C. There are 6 of us going together and I am sure we will have a good time.I can't believe I will be at the congressional luncheon..YAY!!!! I hope and pray that we will be able to reach some of the senators while we are there.Who knows,maybe the bill will pass this year.Time will tell.
There are still a few other things my group is working on but they will be explained in detail when the time is right.
So far,we got a proclamation for one of the towns in our support group,we have a PH Awareness table set up at Baptist Hospital.It was set up yesterday and will be there until the 21st.I had my interview today for a newspaper and there is still more to come.
On a completely different note,I just found out about my phriend Mason.He has been in rejection and is in the hospital.I had no idea.He was unconscious and intubated the last I heard.He is a very strong young man.I pray that he will be all right.I pray that his family gets all the comfort and support they need through this difficult time.
Actually I pray for all us Ph'ers .That a cure may be found.That we get the comfort and the support we need everyday day of our lives.
I may not be able to post until I have returned from D.C.
Peace be with you .
Friday, November 14, 2008
Tuesday, November 11, 2008
PH Awareness Rocks !!!
I have been up since 6am .I woke up thinking about the different things my support group and I want to accomplish this month.We have a full plate and if we are able to do it all ( and we will),it will be totally awesome.
There really isn't too much else going on with me right now.All is quiet on the eastern front.That is how I like it. I am busy doing PH stuff and beading ,beading, beading.My PH hasn't been bothering me.Thank God ,everyday I thank God. It's still early so lets see what this day brings.I may even post again later.
Sunday, November 9, 2008
This illness has symptoms that are so similar to others illnesses that it often gets misdiagnosed.
Shortness of Breath,Fatigue,Bluish tinge to the lips,Dizziness and Fainting are all symptoms of PAH.It effects women 4 to 1.There are approximately 100,000 people in the U.S. that have PH.
I was diagnosed with this "mystery disease" in 1988.At that time there were 150 diagnosed patients in the United States.The information available was extremely limited.There were times when I learned something new about this illness before my doctors.At times we learned together.It was difficult ,there were no medications available .I was put on a blood thinner to prevent blood clots and listed for a heart/lung transplant.Those were my options.
So much has changed since then but we have a long way to go.I want to let everyone know about PH and how it effects so many people.You see there really is no age group and even though woman get it more than men,I know quite a few men with this illness including my own brother Ariel,that passed away in December 2007.He had been dealing with PH for many years and his heart gave out.A massive heart attack was too much for his body to handle.
I also have a younger sister that has this illness and she hangs tough and is a fighter to the core.
So PH Awareness and Advocacy has become my passion.I do it for my brother that didn't live long enough to see a cure .I do it for my sister and myself.That we may live longer and better days.Most importantly I do it for the future PH'ers.The people that already have this disease and don't know it.The people that are fine today and will be diagnosed one day in the future.I have had the blessing of living with this illness for over 20 years.I hope to be here another 20 years,but if not I know I will have had a hand in helping with the future,and the outcome of this illness.If you read this and have any questions,,ask away.If you have any of these symptoms please please see a doctor.There may not be a cure yet,but there are medications that make life with PH totally do-able.I've done for 20 years..
Peace and big ((((((hugs)))))
As for me,well I am doing just fine.I over did it yesterday and triggered some back pain,but I am over it today.
It's a beautiful,sunny autumn day .The trees have such magnificent colors and the sky is a pristine blue.I am going out to enjoy this wonderful weather that mother nature has given us.I may even take some pictures of the country side in full color.
It's an easy kind of Sunday afternoon.
Thursday, November 6, 2008
We will be speaking at some nursing schools.A few of the group members (including myself) are working on getting our stories in local newspapers.We will be setting up a table at one of the major hospitals in the area and The Fox News channel here in NC will be doing a story.I don't have the date on that one yet but I will let you know.
So in keeping with all the advocacy and awareness activities I have been involved in,I have decided to post a picture of the PH awareness bracelets I make and sell.
It's fun to bead.It keeps me focused on one thing,what's in front of me.When I wear mine I will get questions about the bracelet and I am given the opportunity to talk about PH.So this little jewelry idea I had has some great perks.
Anyone just had to share that today.
Be well...God Bless....and always Smile,Smile Smile
Wednesday, November 5, 2008
PAH,,not me -no way !!
That was 20 years ago. Now the denial is gone and acceptance is a part of my life.Don't get me wrong.Just because I can accept my PH doesn't mean that I love it.The reality is that is has helped me to live a better way of life and the flip side of that same coin is that it can be a total bummer.
I try to stay positive through it all.I know that laughter and a lihjt heart can be more healing and helpful than negatives thoughts .So I giggle as much as I can .I dance when my body permits,and just try to enjoy the simplest things in life everyday.