Sunday, November 14, 2010

And Here We Are...

Original Date: November 28, 2009 
Wow. So this is it. The final post for PH Awareness month. Will I keep writing after this? I’m really not sure. It’s been an interesting trip, to say the least. I’m glad I put things out there, that much I know. I found it somewhat therapeutic… and a little exhausting. It’s hard to face your fears head on and put them into words. I hope people have learned a lot about PH. I’m not sure what else I have to say, but if something comes to me, I’ll be back. In the meantime, a little closure for this month…

A reader asked me about the title of the blog – and an explanation seems fitting at this juncture.
Sea glass is one of my favorite things. We used to live just around the corner from a beach in Massachusetts. I would often walk along the shore in the off-season and collect sea glass. It was calming, relaxing, often just me and the waves. When the time came to pick a name for some internet moniker, sea glass seemed fitting just because I like it so much. The more I thought about it though, the more I realized sea glass is also something of a metaphor for me. When you see it, tiny pieces tossed smooth by the waves, it looks nothing like the original form it once had – probably a bottle of some sort. But, it is still beautiful and unique. Although a piece of something, it is whole in its own right. It is kind of like having PH (or going through any major trial, I would guess)…I’m still the same person I was before I got sick. I’m on a hell of a ride – being tossed around by things I can’t control, there are major changes to my world, but I’m still me. Just different in some ways. Hence, the title of this blog.

It is weird to write about all this intense stuff. I wonder what people think. Those that see me often might suspect I have a flair for the dramatic, given my choice of words and the stories I have told on this blog. I, like so many others, “don’t look sick”. Of course, my insides tell a much different story, but you wouldn’t know it to look at me. I hope most times I don’t act sick either. People don’t know unless I tell them. For me, it is more about looking down the road and what they say is to come and wanting desperately to avoid it. It is also about knowing where this journey has already ended up for so many (see previous posts about medication and life expectancies) and wanting to take up the fight on their behalf as well. Both reasons are why I am here writing this.

I am floored by the support I have received. At the risk of slipping into the cliché – touched beyond words (but I somehow have still found a few to write…). This blog has brought some amazing stories to life. People I’ve never met, but who got the link from family, have reached out to me. I’ve gotten gifts of support in the mail at the perfect time, heard from distant relatives I haven’t seen since I was a young child, and this must be only the beginning.

Someone at PHA recently mentioned to me that they think that Pulmonary Hypertension is almost as prevalent as Multiple Sclerosis (MS), but before you met me, had you heard of it? Probably not. Had you heard of MS? Probably! The Center for Disease Control (CDC) still isn’t sure if PH is an incredibly rare disease, or still drastically under-diagnosed.

For those of you who take the time to read, thank you. If you passed on the link, thank you-thank you! I don’t necessarily know who has done it, but I know many people must have since the number of hits have been so great! (That 1,000 mark is just around the corner!)

Please, please keep spreading the word about PH until no one any longer has to be very sick before being diagnosed. Keep spreading the word until there is adequate funding and research towards a cure. We’re getting there – the people working on it, from fund raising to the labs, deserve immeasurable thanks and respect, but until we actually arrive at the day where we can say, “Oh yes, I had this disease, and it was life changing, but I’m all better now!” we haven’t come far enough.

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