Sunday, March 28, 2010

Kite Festival, Cherry Blossoms, and Smithsonium Museums

Today one of my kids and I went out into DC for the International Kite Festival and Cherry Blossoms kick off. It was a beautiful spring day in the district, and tons of people were out enjoying it, just like we were. We jumped on the metro soon after noon hit.From the Spring to China Town, onto the Yellow line, but really, we needed the orange line... that delayed us by 20 minutes or so. We walked slowly enjoying the day, as so many visitors rushed passed us. It felt almost as if we were walking in slow motion. When we rounded the corner to the National Mall, the throngs of people were like waves hitting the beach. National Epilepsy Walk was being held, The Kite Festival and the Cherry Blossoms were attracting more and more waves onto the sand. There really were so many people we were forced onto the street as the cars whizzed by us.

We walked past the Washington Monument and it seemed even more people were flying kites, picnicking, or just sunning themselves! The sky was littered with kites today as participants flew their home made or store bought kites.

It was such a beautiful day full of excitement! But it was a short day too. After a short stay in the Smithsonian Castle, we went thru the African Museum with their artifacts and beautiful and intriguing things, and we also went thru the Islamic exhibits. Believe it or not, there was an exhibit dedicated to the Nuns and Sisters who came to this country as nurses and teachers and architects! Such fascinating things there!!!

We exited through the back of the Castle and headed for the metro. When we got home, I slept for 3 hours before Carly woke me saying she was hungry.

Although this was a packed 3 hours today, I was loosing energy by the 2 hour and absolutely needing to rest for some time. I'm glad we went!! And like I told Carly, these museums are still going to be here! We can always return!!! And we will!!!

Friday, March 26, 2010

me myself and I

So I'm Flippymom.. aka Alex. I've got three teen aged daughters who, when they were really young, I was diagnosed with a terminal incurable condition. I was actually given 2 years and told to make memories for my kids to have of me.

So let me back track a couple of steps and let me tell you what my terminal incurable disease is. I have a rare, orphan, invisible disease called Pulmonary Arterial Hypertension. Women are the ones mostly affected, in their child bearing years. BINGO! that's me! Studies are showing that for every 5 women with Pulmonary Arterial Hypertension, there is 1 man. But, for me this is the saddest part, babies are being born with this horrible disease. The elderly are also getting. I guess it would be fair to say, anyone of any age, gender or ethnicity can get Pulmonary Arterial Hypertension.

There are some reasons why people get Pulmonary Arterial Hypertension (PH). Some get it secondary to other diseases such as lupus and scleroderma. others get it because of methamphetamine usage or even diet drug usage. and, wouldn't you know it, I fall into the category of not knowing why i got it... idiopathic, or of unknown causes.

When I was diagnosed in 1998 there was only 1 FDA approved drug for PH, Flolan. Flolan is a drug infused through IV. At the time, only Remodulin, which was still in clinical trials and called UT15 at the time, was the only drug for PH in clinical trials. Since I was so incredibly sick, going into a double blind study would not have been a good thing for. A double blind study just means that some people get actual drug while others get essentially a sugar pill, only Remodulin was given as a shot into the fatty areas of the body, much like a diabetic would get their medications.

So, Flolan it was! I was on Flolan for four years. There was a catheter in my chest 24 hours a day, with medication that I would have to make myself like some kind of freaking pharmacist, and then have to hook myself up to the medication that I carefully put into a cassette, making sure every last teeny tiny bubble was removed. Of course there were side effects, weight loss, diarrhea and nausea, jaw pain, leg pain, flushing of the face, etc.

Finally, after enduring four years of Flolan, I was well enough to be removed from Flolan and be put on a brand new FDA approved drug, which was just one tiny pill twice a day! No more mixing meds, no more line infections, no more side effect. It is a dream come true!

There are now I believe nine FDA approved drugs on the market for Pulmonary Arterial Hypertension. PH is no longer a death sentence as it was before, as long as a patient is on medications and treatment.

I lead 2 support groups in the D.C. area, am trying to get a pediatric support group up in the air, and am doing so well! Thanks be to God!! and my doctors, Dr Frost in Houston TX, and Dr Girgis in Baltimore MD at Hopkins.

I'm sure I will add more to this blog as I get going...

For the Cure!!
Alex ^i^