tag:blogger.com,1999:blog-88667899393802700252024-03-05T00:19:33.877-05:00Di's PAH JourneyDianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.comBlogger23125tag:blogger.com,1999:blog-8866789939380270025.post-52199463952235871932009-11-18T09:28:00.002-05:002009-11-18T09:35:15.420-05:00Pulmonary Hypertension Awareness In Davidson County NCI have waited a few days to post this.The truth is I really want to be in DC right now with the patients for advocacy day,but I know we don't always get what we want.I was however able to speak to an editor of a free magazine that is distributed to over 100 locations through out the county I live in.It is called Davidson Focus.They used my story on Pulmonary Arterial Hypertension with some pics from our learning day last week. There will be 22,000 issues of this magazine given to all the hospital,doctors offices,herbal and vitamin shops,and physical therapy centers,etc..Hopefully one person will read it and learn something .<br />Here is the link to the pdf page : http://dcfocusmagazine.com/focus.pdf<br />I am on page 20 I believe.if this does not work then go to :<br />http://dcfocusmagazine.com/neighborhoodspotlight.html<br />Click on see all stories and it will let you download the story as a pdf file.I hope this works.<br />Have a great day.Happy Awareness Month !!!<br />Peace PhamilyDianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com7tag:blogger.com,1999:blog-8866789939380270025.post-68664154388139004552009-11-07T17:42:00.004-05:002009-11-07T18:05:37.620-05:00November is Pulmonary Hypertension Awareness Month. Pass it on!When I first heard I had PAH,I felt totally overwhelmed and went into denial.The information the doctors gave me that day was too much and way too scary.I had just had my first cardiac cath.I thought they were mistaken.Not me ...No way !<br />The first thing I did after that was to cry.I had also been told it was very rare and the only other person that had it in the area,actually lived in Massachusetts and she had just had a heart/double lung transplant.<br />At that time there were so few of us in the country,I relied on the people I met at the transplant support group.There were no groups or even websites for Pulmonary Hypertension available.I felt very alone with my diagnosis.Even so I stayed connected to these people because they gave me hope.Then my brother in New York was diagnosed followed by my sister.We had each other to talk to,but that was a few years after I was diagnosed.<br />Today I am a co-leader to a PH Support group.I have many friends all over the U.S. with this disease.I no longer feel alone and I my life is full of hope !!<br />The best advice I heard from everyone was to listen to my doctors and fellow patients.Take extra good care of myself and change my life style.It took me awhile,but that is exactly what I did.I cleaned up my act,lost weight,started to exercise and lived life to its fullest a day at a time.<br />That was over 20 years ago and I still try to live my life my by this advice .I exercise,keep my weight in check,listen to my doctors and stay very connected and involved with my phfriends and phamily.They have saved my life many times and I love them all .My brother passed away 2 years ago from this illness He was a fighter and held on for a long time. My sister is very strong and a fighter as well.We stay in touch with each other and share news that we hear about PH.<br />For awareness month this year,I am reaching out to more doctors with information on PAH.I am trying to get my story published in a local medical magazine and I continue with the advocacy work that I love so much.My personal goal is to reach out to 5 primary care doctors with info on PH and try to get them involved with PHA.I have already done this with one,4 more to go.<br />If you have PH or know someone that does,try starting a blog or join the big PH family on face book.Spread the word...it's awareness month !Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com1tag:blogger.com,1999:blog-8866789939380270025.post-5815561286179004482009-11-05T19:51:00.002-05:002009-11-05T20:00:21.072-05:00Pulmonary Hypertension Learning DayTomorrow I will be at a learning day .It has been put together as a joint effort between Duke University Hospital and U.N.C in Chapel Hill.<br />I was asked to speak in the afternoon,so I will be on the panel with a doctor,nurse and and 2 pharmacist.Wow ! I had no idea it was going to be a panel type thing .I thought it was going to be a small meeting.Anyway it is an absolute honor to do something like this.I will follow up on Saturday and give more details and maybe even pictures.<br /> On another note: Fort Hood.How terribly sad.So many people have been and will continue to be effected by this.I pray that they have peace in their hearts soon.<br />The irony of it all.A psychiatrist loses it and does what he has been helping others not to do.May God have Mercy on him.<br />PeaceDianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com0tag:blogger.com,1999:blog-8866789939380270025.post-19847243601946194082009-11-02T14:28:00.003-05:002009-11-02T14:50:47.853-05:00Awarenss Month is Here !!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHoHLIvzdgXdJUYvjbkfppuAR1JK1y58UyMFD2JhjRrF7sXUw91WpmyeRokIqunYw6ukRsL2s8tsuFI5edqJS3QNP8EucRece0nGsBYAxYa8cj1NGzIzgSDMBaeC_KUSEBsuWKnz9juDHU/s1600-h/Diane+Ramirez+,Cindy+Pickle,Senator+Kay+Hagan+and+Janet+Cecil.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 243px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHoHLIvzdgXdJUYvjbkfppuAR1JK1y58UyMFD2JhjRrF7sXUw91WpmyeRokIqunYw6ukRsL2s8tsuFI5edqJS3QNP8EucRece0nGsBYAxYa8cj1NGzIzgSDMBaeC_KUSEBsuWKnz9juDHU/s320/Diane+Ramirez+,Cindy+Pickle,Senator+Kay+Hagan+and+Janet+Cecil.JPG" alt="" id="BLOGGER_PHOTO_ID_5399595118017171842" border="0" /></a>The picture above is me,Cindy Pickles ,Senator Kay Hagan and Janet Cecil at her DC office-we had coffee and doughnuts together.What a treat !<br />I know it has been awhile since I posted on here.I got kind of lost doing so many other things.I have found my way back-so here I am .<br />As I have already said November is Pulmonary Arterial Hypertension Awareness month.I plan on writing everyday about PH.Personal stories,new info etc.<br />First I would like to begin with an update.I went to Maryland and DC last month .There were three of us from North Carolina and we wanted to lobby.That is exactly what we did.We met with Senator Kay Hagan.We told her about PH,how it effects us,how many patients there are in NC and we asked her to bring our bill H.R. 1030 into the Senate.She said she would take it into consideration.We also met with Jennifer from Senator Richard Burr's office.Gave her all the facts and info and asked the same thing.She passed the info on to his Public Health Expert.We are hoping they will do something together.Following up on this is imperative.<br />I so enjoy advocacy.I love the whole legal process,going to Washington DC and meeting new people.Doing this has helped me in a way I wasn't expecting.It has boosted my self-esteem.I honestly feel that I can make a difference.We all can make a difference.We are a phamily that cares for each other and holds each other up when we are down.<br />One of the perks from our trip last month was an invitation to tour the White House.There were 4 patients and 3 caregivers touring the white house on October 16Th.it was totally awesome!<br />We also got a chance to meet the entire PHA board and fill them in on what we have been doing.<br />I went to a support group meeting there and got a chance to visit with Ellen for a few minutes and take some pics.It was a great trip.We accomplished what we set out to do.We were also able to drop off a legislative kit at Congressman Butterfield's office.That visit made it official.All 13 reps and both senators from North Carolina have now been presented with H.R 1030.The Tom Lantos Pulmonary Hypertension Research and Education Act of 2009-woohoo !!!!<br />As of today in N.C. we have 4 co-sponsors and 2 senators considering our bill.I hope and pray that we will get more co-sponsors and get this bill passed.Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com1tag:blogger.com,1999:blog-8866789939380270025.post-85526829951217789792009-05-23T12:24:00.005-04:002009-05-23T12:39:09.596-04:00PH Walk/Run for Research- A Victory !<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaXXAnROqUzp_aovgzfP8fJDgKgQ4u0yyuVywvaPs3-I-2neR_vSF67Cx72Crvxv1Cl8XV2ngBL4GPdHLSbC1ic10wYqgSclvyc6EDaMP1tGW08uJ8V71NQjpL-2osxg5afNUIe_KnUFEF/s1600-h/I+Did+It.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 320px; height: 243px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaXXAnROqUzp_aovgzfP8fJDgKgQ4u0yyuVywvaPs3-I-2neR_vSF67Cx72Crvxv1Cl8XV2ngBL4GPdHLSbC1ic10wYqgSclvyc6EDaMP1tGW08uJ8V71NQjpL-2osxg5afNUIe_KnUFEF/s320/I+Did+It.jpg" alt="" id="BLOGGER_PHOTO_ID_5339059527914754114" border="0" /></a><br />The Piedmont PH support group had its annual Walk/Run for PH Research on May 17TH.<br />This is my group and doing a walk is something I have wanted to do for a long time.<br />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 !!!<br />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.<br />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 !<br />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 .<br />I pray that this Memorial Day Weekend is full of joy for all.<br />PeaceDianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com2tag:blogger.com,1999:blog-8866789939380270025.post-76477132972629518012009-03-31T12:12:00.002-04:002009-03-31T12:25:47.450-04:00This 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.<br /> I am so grateful to be alive!<br />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.<br /> 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 !!!<br /> 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.<br />AmenDianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com2tag:blogger.com,1999:blog-8866789939380270025.post-77557120223442922632009-02-27T13:06:00.002-05:002009-02-27T13:17:19.219-05:00My MomI 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.<br /> 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.<br /> Peace be with all of you my phabulous phfriends !Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com5tag:blogger.com,1999:blog-8866789939380270025.post-84857368966855193242009-01-19T14:51:00.002-05:002009-01-19T15:02:23.163-05:00It'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.<br />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 .<br /> Here are four steps to develop contentment in your life.<br />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.<br />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.<br />That’s why the Bible teaches it is unwise to compare (2 Corinthians 10:12).<br />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.)<br />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.<br />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.<br />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.<br />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.<br />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).<br /> 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 !<br /> So to all of my Phamily.I love you,trust you and look forward to growing with you this year.<br />"lesson in contentment" by Rick Warren.Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com3tag:blogger.com,1999:blog-8866789939380270025.post-88270164866938076022008-12-17T20:34:00.002-05:002008-12-17T20:48:10.745-05:00ScroogeI will start anew<br />I will make amends and I will make quite certain that the story ends ,<br />on a note of hope<br />on a strong amen<br />and I'll thank the world and remember when I was able to begin again!<br /> My favorite Christmas Story and favorite quote !<br />I am going to watch my scrooge now and I know I will feel the gratitude I always feel after<br />watching the movie.It's a great story of transformation,renewal and hope for the future .<br /> AMEN !!!Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com1tag:blogger.com,1999:blog-8866789939380270025.post-52151893067327194202008-12-07T22:51:00.002-05:002008-12-07T22:56:28.651-05:00Christmas Time is HereI 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.<br /> 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.<br /> That's all folks !!!Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com3tag:blogger.com,1999:blog-8866789939380270025.post-68770468830220165892008-12-01T23:31:00.002-05:002008-12-01T23:41:16.613-05:00Awareness Month is Over but Awareness Goes OnNow 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.<br />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 !Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com1tag:blogger.com,1999:blog-8866789939380270025.post-35609200600341232042008-11-28T11:06:00.002-05:002008-11-28T11:25:55.866-05:00Attitude of GratitudeToday I am grateful for Life ! The miracle of waking up to see another day is a wondrous happening.<br />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.<br />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.<br />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.<br />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 !<br />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.<br />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.<br />Peace be with you today and always<br />(((((((hugs)))))Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com2tag:blogger.com,1999:blog-8866789939380270025.post-65878728760166962582008-11-26T00:01:00.004-05:002008-11-26T00:12:32.334-05:00PH Awareness in the NewspaperWell this is the last of the awareness efforts that I have done..So far anyway.<br />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.<br />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:<br /><a href="http://www.the-dispatch.com/article/20081125/ARTICLES/811250301/1009/living?Title=Woman_wants_to_raise_awareness_of_pulmonary_hypertension">http://www.the-dispatch.com/article/20081125/ARTICLES/811250301/1009/living?Title=Woman_wants_to_raise_awareness_of_pulmonary_hypertension</a>_<br />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.<br />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.<br />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 !Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com3tag:blogger.com,1999:blog-8866789939380270025.post-24095038245582832652008-11-24T18:17:00.003-05:002008-11-24T18:41:00.107-05:00Lobby Day-Mission AccomplishedAs 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)<span class="blsp-spelling-error" id="SPELLING_ERROR_0">Medeta</span>,<span class="blsp-spelling-error" id="SPELLING_ERROR_1">Sharee</span>,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.<br />As for lobby day itself.It was fun,hectic and exhausting !We went to the luncheon.<span class="blsp-spelling-error" id="SPELLING_ERROR_2">Rino</span> from <span class="blsp-spelling-error" id="SPELLING_ERROR_3">PHA</span> spoke.Then Congressman Brady spoke for a few minutes.Congresswoman <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Capps</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_5">ph'er</span> in the family.She was adorable and did a great job.Another patient Donna <span class="blsp-spelling-error" id="SPELLING_ERROR_6">Pederson</span> spoke after her .Her story was compelling.She is definitely a strong warrior woman.<br />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.<br />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.<br />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 ..<span class="blsp-spelling-error" id="SPELLING_ERROR_7">lol</span><br />I picked up some goodies for my honey and myself and then it was time to get on the bus and head back to <span class="blsp-spelling-error" id="SPELLING_ERROR_8">PHA</span>.<br />What a day.I met so many people.I saw some of the most beautiful architecture in these buildings and I got to shop,,<span class="blsp-spelling-error" id="SPELLING_ERROR_9">woohoo</span>.Most importantly we did what we set out to do.<br />Mission Accomplished !Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com2tag:blogger.com,1999:blog-8866789939380270025.post-40654812893915478652008-11-23T17:21:00.004-05:002008-11-24T18:16:11.323-05:00PH 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.<br /><a href="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">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</a><br /><br />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 !<br />(((((hugs))))Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com2tag:blogger.com,1999:blog-8866789939380270025.post-83000275952522133582008-11-18T17:56:00.002-05:002008-11-18T18:17:54.475-05:00Blogging Day for PAH AwarenessToday is national blogging day.Sounds funny but it is a way to get some awareness out there about Pulmonary Arterial Hypertension.We need to tell our stories to as many people as possible.<br />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.<br />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.<br />There are still a few other things my group is working on but they will be explained in detail when the time is right.<br />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.<br /><br />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.<br />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.<br />I may not be able to post until I have returned from D.C.<br />Peace be with you .<br />(((((hugs)))))Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com3tag:blogger.com,1999:blog-8866789939380270025.post-45393479539636107262008-11-14T21:33:00.004-05:002008-11-14T21:53:27.008-05:00The Dance of Joy for Cindy,,woohoo !!<div><br /><br /><br /><br /><div><a href="file:///C:/Users/Diane/Desktop/snoopy.gif"><img style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 98px; CURSOR: hand; HEIGHT: 146px" alt="" src="file:///C:/Users/Diane/Desktop/snoopy.gif" border="0" /></a><br />Well as you can see snoopy is doing the Dance of Joy !!!</div><br /><br /><div>One of the things our support group has been trying to do with no luck has been achieved by our fearless support group leader Cindy Pickles.She had 3 minutes to speak in front of the town council,even though she had already been told it was too late.She went and spoke anyway.The mayor and other members were so moved that made it retro-active and now in the Town of Lewisville North Carolina November is officially PH Awareness Month..Go Cindy !!!!! I am so proud of her and so blessed to have her in my life.She is a great teacher and friend.</div><br /><br /><div>There are a few other major things that are supposed to happen sometime this week but I won't get into any details.I am afraid to jinx us.Hopefully we will be able to do these before we leave for the congressional luncheon.Rest assured I will let you all know what it is when it happens.In the meantime Dance ,Snoopy ,Dance !!!!!<br /><br /></div><br /><br /><div><br /><br /><div><br /><br /><div><br /><br /><div><br /><br /><div><br /><br /><div><br /><br /><div></div></div></div></div></div></div></div></div>Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com2tag:blogger.com,1999:blog-8866789939380270025.post-81799216811548411372008-11-11T08:39:00.004-05:002008-11-11T08:54:32.320-05:00Awareness Rocks<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAKqiCtH1fvXr4sMK0JIg-5odGM7auM-QJT2XUXlgH18k9UPWQzKgSLqp4l_2vG1TmhJVPRUWMtiQtVlleL0uZftg4z093k2nn8mC6gw7ZCVQfxy5J-KovBra9wgXj_5NJPRMQR385NhKL/s1600-h/logophawareness150.jpg"><img id="BLOGGER_PHOTO_ID_5267397970115910738" style="FLOAT: right; MARGIN: 0px 0px 10px 10px; WIDTH: 89px; CURSOR: hand; HEIGHT: 150px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAKqiCtH1fvXr4sMK0JIg-5odGM7auM-QJT2XUXlgH18k9UPWQzKgSLqp4l_2vG1TmhJVPRUWMtiQtVlleL0uZftg4z093k2nn8mC6gw7ZCVQfxy5J-KovBra9wgXj_5NJPRMQR385NhKL/s320/logophawareness150.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtsSJ1k6goRr1y07voy3ZPy8plLnFibL0LL96WzbP6Iv0FX1NMVail6CiOfxA1wFegKXecein8-GutnUbSnTDtP_9r5TBHl9LhzUxzprITJQH9NlPtZMBB6ZnWhuohar5BKVt13uIbbsLD/s1600-h/ribbon.jpg"><img id="BLOGGER_PHOTO_ID_5267394380341749362" style="FLOAT: left; MARGIN: 0px 10px 10px 0px; WIDTH: 74px; CURSOR: hand; HEIGHT: 150px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtsSJ1k6goRr1y07voy3ZPy8plLnFibL0LL96WzbP6Iv0FX1NMVail6CiOfxA1wFegKXecein8-GutnUbSnTDtP_9r5TBHl9LhzUxzprITJQH9NlPtZMBB6ZnWhuohar5BKVt13uIbbsLD/s320/ribbon.jpg" border="0" /></a><br /><br /><div></div><br /><br /><p>PH Awareness Rocks !!!</p><br /><p>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.</p><br /><p>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.</p></div>Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com2tag:blogger.com,1999:blog-8866789939380270025.post-55870137081154349762008-11-09T22:38:00.003-05:002008-11-09T23:12:28.904-05:00So What is PAH ?<span style="font-family:georgia;color:#330033;">Pulmonary Arterial Hypertension is a rare illness ,it's incurable and there are only a 6 medications currently available for treatment.PAH is actually very hign blood pressure in the lungs.The arteries thicken causing the heart to work harder and harder to pump the blood through the thickened arteries.If left untreated it is deadly.</span><br /><span style="color:#330033;">This illness has symptoms that are so similar to others illnesses that it often gets misdiagnosed.</span><br /><span style="color:#330033;">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.</span><br /><span style="color:#330033;">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</span><span style="color:#330033;"> ,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.</span><br /><span style="color:#330033;">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.</span><br /><span style="color:#330033;">I also have a younger sister that has this illness and she hangs tough and is a fighter to the core.</span><br /><span style="color:#330033;">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..</span><br /><span style="color:#330033;">Peace and big ((((((hugs)))))</span>Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com1tag:blogger.com,1999:blog-8866789939380270025.post-87427541774560532612008-11-09T13:17:00.003-05:002008-11-09T13:27:47.883-05:00Sunday News<span style="color:#6600cc;"></span>I just read about President Elect Obama wanting to reverse some of the policies that President Bush has put into effect.One of them being stem cell research.That would be such great news for all PH'ers.Stem cell research is being done in various parts of the world regarding PH.There has been some exciting progress.I wonder how much more progress would be made if the US did some research of its own ?<br />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.<br />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.<br />It's an easy kind of Sunday afternoon.Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com0tag:blogger.com,1999:blog-8866789939380270025.post-61171788883802618432008-11-06T23:13:00.002-05:002008-11-06T23:16:48.086-05:00I forgot to Add the Pictures<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCfBJddpANaQonll-itmDvjNkd5iGE-Ib1zZUvlbaEGEFPOULMl4Fp9-7KZ0bqhaFwKThOTuudXPcwm-jmw30lSn76tcXrkV2mcZmR4CI_NWE5u13yXp6OyLVh-92-Yjnce7fJ86D1NYbX/s1600-h/Silver+Hearts.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 243px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhCfBJddpANaQonll-itmDvjNkd5iGE-Ib1zZUvlbaEGEFPOULMl4Fp9-7KZ0bqhaFwKThOTuudXPcwm-jmw30lSn76tcXrkV2mcZmR4CI_NWE5u13yXp6OyLVh-92-Yjnce7fJ86D1NYbX/s320/Silver+Hearts.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5265764745003723794" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPWNTb1ZE4xHqr4z54kQHqIsj1M_CToF5DAoJJRWVfG6Xi36sl65Rz8QIExxCzjLF5E2QZbjfhInD0zrXPZCQizZe3gcZQKvhTO_4ZcEcfL59L2gD5r-n6-9tUWTpTPFimn4-EV3jdNIgG/s1600-h/Amethyst+Hearts.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 243px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPWNTb1ZE4xHqr4z54kQHqIsj1M_CToF5DAoJJRWVfG6Xi36sl65Rz8QIExxCzjLF5E2QZbjfhInD0zrXPZCQizZe3gcZQKvhTO_4ZcEcfL59L2gD5r-n6-9tUWTpTPFimn4-EV3jdNIgG/s320/Amethyst+Hearts.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5265764736446927970" /></a><br />OK I forgot to add the pictures.What can I say I am new at this. Oh well I live and learn everyday.<br />It's good to be me...lolDianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com2tag:blogger.com,1999:blog-8866789939380270025.post-33597115796271959022008-11-06T22:53:00.000-05:002008-11-06T23:01:20.778-05:00Ph Awareness Oh yeah<span style="font-family:verdana;color:#663366;"> Well today was an interesting day.As you may have heard November is PAH awareness month.I got two calls today for our group to do PH presentations.Woohoo..it's very exciting.</span><br /><span style="font-family:Verdana;color:#663366;"> 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.</span><br /><span style="font-family:Verdana;color:#663366;"> 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.</span><br /><span style="font-family:Verdana;color:#663366;"> 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.</span><br /><span style="font-family:Verdana;color:#663366;"> Anyone just had to share that today.</span><br /><span style="font-family:Verdana;color:#663366;"> Be well...God Bless....and always Smile,Smile Smile </span>Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com1tag:blogger.com,1999:blog-8866789939380270025.post-73105449552753395012008-11-05T11:13:00.000-05:002008-11-05T11:18:29.086-05:00In The Beginning<span style="font-family:georgia;color:#993399;">In the beginnig there was oodles of denial.</span><br /><span style="color:#993399;"> PAH,,not me -no way !!</span><br /><span style="color:#993399;">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.</span><br /><span style="color:#993399;"> 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.</span>Dianehttp://www.blogger.com/profile/16841298512742035116noreply@blogger.com4