Thursday, February 26, 2009

Advocacy is the extra bag I tote

A new bill was recently presented in the HOUSE - HR 1030. It is about Pulmonary Hypertension and what this disease can do and now we desperately need to have our Federal Representatives co-sponsor this bill. I have written to several and will continue to write to more until we can get this bill to pass in the HOUSE and move on to the SENATE. This is what I emailed.

Honorable Congressperson (you can copy this and fill in your Representatives name):

As a member of the pulmonary hypertension community, I urge you to co-sponsor H.R. 1030, the Tom Lantos Pulmonary Hypertension Research and Education Act of 2009.

Pulmonary hypertension is a simplified name for a complex health problem--continuous high blood pressure in the pulmonary artery in the lungs, resulting in an enlarged heart which can lose its ability to pump. Many associate PH with common high blood pressure instead of a distinct and grave illness. Someone with high blood pressure can live 30 or 40 more years. Without treatment, 50% of PH patients die within 2.8 years of diagnosis.

Symptoms of pulmonary hypertension may include: Shortness of breath with minimal exertion, chest pain, unusual fatigue, a dry cough, edema, heart palpitations, fainting and dizzy spells. Pulmonary hypertension is described as progressive and fatal.

The sooner a PH patient receives effective treatment, the better their prognosis. Several treatments are available, but patients see an average of three physicians before a fourth makes an accurate diagnosis--often losing a precious year, or more importantly, the deterioration for quality of life.

The Tom Lantos PH Research and Education Act of 2009 Co-sponsorship of H.R. 1030 brings us one step closer to...

  • preparing more physicians for prompt and effective management of PH
  • raising public awareness about PH symptoms
  • increasing the effectiveness of clinical researchers in the PH field

Your co-sponsorship supports improved diagnosis, improved treatment and the search for a cure to this deadly disease. Please help slow the progression of this dastardly disease and extend our quality of life.

Thank you in advance for your valuable support.

You sign your name along with address and phone number. To find out who your Representative is go to: type in your zip code (may need those additional 4 digits) and send it on.

To those of us with Pulmonary Hypertension this is so very, very important. We almost made it last time -- and every minute counts with the 111th Congress -- politicians can be slow as busy as they get.

Remember to SMILE ~ it's contagious


Saturday, February 14, 2009


It's called sweethearts day -- and many other endearments. We send or give or receive flowers, candy and sweet cards or notes saying how special someone really is in our lives. We write romantic poems or fun and lovey sayings. Something to make this day special and loving.
The history of this day has a few mysteries that follow it, one being: "One legend contends that Valentine was a priest who served during the third century in Rome. When Emperor Claudius II decided that single men made better soldiers than those with wives and families, he outlawed marriage for young men — his crop of potential soldiers. Valentine, realizing the injustice of the decree, defied Claudius and continued to perform marriages for young lovers in secret. When Valentine's actions were discovered, Claudius ordered that he be put to death. While in prison he fell in love with his jailers daughter and sent her notes signed "from your Valentine"..... So there you have it -- or one of them.
Now I didn't get flowers for Valentine's Day but I did get a HUGE box of chocolates. I couldn't find an appropriate picture of a box of chocolates so hence the picture of roses -- another symbol of love and affection. This box of chocolates is too big to fit on my lap now that's a lot of candy. I have limited myself to only 3 pieces of chocolate a day -- I should be done in about a month. It really is big.
Tom and I celebrated Valentine's Day by giving each other lovey dovey cards... he is so good about getting cards and buys just the right one and he also brought over lunch and the chocolates.
Our one daughter invited us for dinner on Sunday (the 15th) -- we had steak and shrimp and fixings and this was also to celebrate our anniversary which is today. I told the kids today is so special because it is our anniversary and it is also a Holiday (President's Day) *;*. Again special cards but no special lunch == I had made a meatloaf Saturday night and we had ml sandwiches... good enough for me and it was for Tom too.
Remember to smile, it's contagious...


Wednesday, February 11, 2009

Be Prepared

This past Sunday was Boy Scout Sunday at the church my daughter and her family attend. Jerod is now a Boy Scout and Nolan is a Webelos or Tiger Cub -- not sure on that one, whichever is the youngest. I was invited to attend this special service to honor scouts and scouting.

With the exception of the Pastor doing prayer requests and upcoming notices, the whole service was conducted by the Scouts. From the Scout Master, Den Mothers, Scout Leaders to the scouts themselves, a brief history of scouting, the religious aspects of scouting; Bible scripture being read and applied to their daily living. It was a very impressive presentation. Of course, anything involving my grandchildren is going to be impressive and emotional for me... *;* Jerod carried the Boy Scout Flag in and also did a "reading", Nolan helped with the collection and had a proud toothless smile when they all sang their songs.

"Scouting has always been about preparing boys for life," says Chief Scout Executive Jere B. Ratcliffe. "Through the Scout Oath and Law, almost 99 million youngsters have learned to help and respect other people, exercise their minds and bodies and know right from wrong." A recent study by Louis Harris & Associates found that three-fourths or more of Boy Scouts believe the program teaches them right from wrong, helps them feel more self-confident and provides them with new skills. I think we all know this part of scouting.... To be prepared.

And being prepared brings me to one of my adventures that has almost become typical for me. Last Friday, Hailey, my granddaughter (cousin to the above boys), was having a concert at school. As mentioned, if I am able I will attend anything I can that involves the grandkids. Well, it happened to be a night that my friend was coming for dinner; she also was looking forward to seeing the kids preform. So when Mary Lou arrived, off we went to the Middle School; next town over and about 10 miles away. I drove. We were about half way there when my car started to act up. It slowed down when I gave it gas and then it would (pardon my English) fart :o) I haven't a clue as to what would cause this. Mary Lou said be sure when I go out again to have someone with me -- JUST IN CASE. Wow, does that sound familiar. (I might get into that later)

The concert, I think a better description would be talent show, was awesome. Those kids; 6th, 7th and 8th graders were amazing. Some sang by themselves, some in groups of 2 or three. Some had amazing voices, some sang off key. Some played the guitar, some drums one even played the piano. Just brought a smile to my face and tears to my eyes -- and it was soooo LOUD. But a great performance by all. I got goose bumps when Hailey and her friend sang their song. They done good. (I also brought my tape recorder and recorded her singing -- and remembered my camera this time)

The trip back home was pretty much ok, my car did act up a bit but not like on the way over. We made it home, cooked dinner and chatted the evening away and I think maybe my car needs to be used more than once or twice a month.

Now for my being prepared. When I go out anywhere I have a routine of sorts. I have my back up medicine -- JUST IN CASE -- I have enough oxygen, plus extra -- JUST IN CASE -- I bring my cell phone -- JUST IN CASE. I am ready for any minor inconvenience -- JUST IN CASE. Well, Sunday on my way to church, I did have my medicine and oxygen but I forgot my cell phone -- left it on the charger. Dang. I was about halfway to the church when I remembered and I thought to myself -- self, people survived many years without cell phones. I will be fine. I get to the interstate area (have to drive past it) when the car started acting up. Now luckily the speed limit isn't too fast at that point because my car was barely moving. I knew I couldn't stop there as I was on the overpass and I was soooo hoping I would make it across the bridge. I did put my flashers on so those behind me would know I wasn't being some senile old person not knowing how to drive *;* and finally found a spot where I could pull over. Well, low and behold who comes pulling up behind me but a State Trooper. Whoo Hoo. He comes to the car and asks if everything is o.k. I explained that my car was acting up and even mentioned the farting -- well how else can you describe what was happening. It put a smile on his face too.... He said he didn't know that much about things like that and asked where I was going. It would be another 3 or 4 miles down the road to the church. He said he had something to do and would drive out that way after to make sure I made it. I made it -- the church service was great -- I made it home with a couple of fartters... Life is good. I'm not going to get into living life and having pulmonary hypertension and all the restrictions and complications that are involved with that. This is long enough -- read some previous postings.... :o)

Now don't forget to SMILE -- it's contagious