Friday, November 13, 2015

Pulmonary Hypertension Awareness Month

Congressional Luncheon 2014 and 2013 With fellow patients from all across the country

Each year in November, the Pulmonary Hypertension community joins together virtually, as well as in real life, to bring awareness to this horrible disease. It takes so long for Pulmonary Hypertension patients to be correctly diagnosed due to the many different conditions the symptoms mimic. It took nearly 3 years for me to be diagnosed properly with Pulmonary Arterial Hypertension, (PAH). Well, actually back them, it was still being called Primary Pulmonary Hypertension. Primary meaning there are no underlying conditions that could cause a person to get the condition. Now many years later, as we know, PH has been classified into several different conditions, and causes for the condition.... 

I'm still primary, or idiopathic,meaning of unknown cause. 

Back to what I was saying about November. November is our awareness month for PH, and for as long as I've known about awareness month, I've been getting proclamations from city, county and state government officials. I have been calling radio, television and newspapers trying to get them to have a segment on PH. An old high school friend of mine from Cerritos, CA, actually did this for several years. He is on air talent for a radio station in Long Beach, CA, and I was so thrilled that he wanted to do this for us!! :)
I have spoken on air at a local radio station in Texas, the first few years after diagnosis. In those times, awareness month was in September. I'm not sure why it was changed to november of all months! lol We're getting ready for Thanksgiving and all the holidays, as well as starting holiday shopping! I have had a few fundraisers in recent years, a Pizza For the Cure, a Paint Night for a Cure, are just two that i can remember off the top of my head. 
Many, many support groups and individuals hold major fundraising events, such as Wojo's gold tournaments, Long Beach's Fun Walk, just off the top of my head. 

But the one thing that I always look forward to is Congressional Luncheon and Lobby Day! Unfortunately though, the day was canceled. I believe it was so that others across the country who have a hard time traveling, but still want to be involved can join in on the advocacy by calling, emailing and writing in to their congressional representatives. 

The luncheon has always been a boxed lunch, but the speakers of the luncheon have a very very powerful story to tell! The last keynote speaker was Jessica Armstrong, a veteran of the armed services, who while serving in Afghanistan, developed Pulmonary Hypertension due to clots in her lungs. Chronic Thromboembolic Pulmonary Hypertension, (CTEPH). 

There are so many things that made Congressional Luncheon and Lobby Day so important for me, not just the patient, medical and professional speakers. not just talking to the Health Liaisons to the Congressional Representatives, sharing our stories and watching them so moved by the stories of all the patients that go and lobby, that they are inspired to go immediately and tell their bosses what they just learned.. and not just seeing all my fellow Pulmonary Hypertension patient friends! I guess it's all these things!

 I get to see my family again, yeah, they aren't just friends, but family. Those who know exactly what it's like living with a chronic incurable progressive disease that will one day defeat me, all of us. My family who support me and I hope I support them just as much! My family who cheer me on, share in my joys and hold me up in prayer when I'm down. These amazing people who any time of the day or night are just a click away! It's true that we share one major thing in our lives, but that one major thing is like an adhesive that bonds us together. 

I have been known to say, "why are we celebrating a disease that has taken so many loved ones away from us?" but now I know, we are celebrating our wins, the days we woke up and got out of bed, even though it took every ounce of strength and energy we had for the day. We are celebrating each other and ourselves! and of course, we take this each day out of this month, like I do every other day of the year that I am out and about, to raise awarenesses, in hopes that others out there will be diagnosed a lot sooner than the majority of us out here had been, to not be so severe in their disease and be able to not have to go on such invasive medications. 

Happy Awareness Month!! 

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