Wednesday, May 30, 2012

For Good

PH is always a one-two punch. Up. Down. Fly. Crash. A great appointment? Flying! A bad one... seismic crash. An incredible time connecting with other people who really get you (see posts below). Fly. Another patient dies... a child, like Molly Dunne, or someone just your age, as happened again this week,  and it's the crash again. A dear friend in dire health straights... and you freeze, just waiting and praying for it to be okay. And the events always seem to come together. Up. Down. Crash.

Last year I sat in a funeral for a baby girl, the daughter of a friend. There was absolutely nothing in that moment that could have been said to me to bring peace or make the situation okay, at least I didn't think so. How do you justify tragedy?

Well, the priest somehow managed to find just the right words. He spoke of our tears that day, how they were blessed. He said we have a choice in life. We can open our hearts and love, and risk our hearts being broken. Or, we can keep our hearts closed, and the price for that is a shriveled and cold heart. Each of us sat there that day totally broken-hearted, the tears flowing. And yet, it was because of the choice we had made to love the family who was saying goodbye to their baby girl. And so, because we opened our hearts, those tears were blessed. We had done the right thing, as painful as it was.

In that moment, I did feel peace. The pain of what I was witnessing didn't leave, but somehow, somehow... it was going to be okay, because in the human experience, here we were with open and broken hearts, loving someone who needed it.

I could not help but to relate all this to having Pulmonary Hypertension too. Being so involved in the PH community means I see and experience a lot of heart break. A lot. More than I feel like I can handle sometimes. And yet, I've chosen to open my heart. And if I have to be here, it is a blessed place to be. To make a difference. To have people coming into my life and change it in ways I wouldn't have imagined. I never knew I could so unconditionally love people I had never met, or only spent a handful of hours with, and yet... here we are.

I am totally obsessed with the song "For Good" from Wicked, have been for a long time, but it's been the kind of couple of weeks where music really grabs you (well, grabs me, anyway) and helps you through a rough patch.

The song speaks of how people come into our lives for a reason, how they help us, and we help them in return, and all of this results in changes in our world, big changes, for good.

I guess that sums up the PH experience right now. Alone, we are limited. Together, we can change each other for good.

I can't find a good original clip of the song online, but Glee did an amazing version:

And they lyrics...

(Elphaba) I'm limited Just look at me - I'm limited
And just look at you  
You can do all I couldn't do, Glinda  
So now it's up to you  
For both of us - now it's up to you...

(Glinda): I've heard it said
That people come into our lives for a reason  
Bringing something we must learn
 And we are led  
To those who help us most to grow
If we let them  
And we help them in return  
Well, I don't know if I believe that's true  
But I know I'm who I am today
 Because I knew you...
Like a comet pulled from orbit  
As it passes a sun  
Like a stream that meets a boulder  
Halfway through the wood  
Who can say if I've been changed for the better?
But because I knew you I have been changed for good

(Elphaba): It well may be  
That we will never meet again
 In this lifetime  
So let me say before we part  
So much of me
  Is made from what I learned from you
You'll be with me  
Like a handprint on my heart  
And now whatever way our stories end
I know you have re-written mine
By being my friend...
Like a ship blown from its mooring  
By a wind off the sea
  Like a seed dropped by a skybird
  In a distant wood  
Who can say if I've been changed for the better? 
 But because I knew you

(Glinda): Because I knew you

(Both): I have been changed for good

(Elphaba): And just to clear the air
I ask forgiveness
For the things I've done you blame me for

(Glinda): But then, I guess we know  
There's blame to share

(Both): And none of it seems to matter anymore

(Glinda): Like a comet pulled from orbit
As it passes a sun
 Like a stream that meets a boulder
 Halfway through the wood

(Elphaba): Like a ship blown from its mooring  
By a wind off the sea
Like a seed dropped by a bird in the wood

(Both): Who can say if I've been Changed for the better?
 I do believe I have been Changed for the better

(Glinda): And because I knew you...

(Elphaba): Because I knew you...

(Both): Because I knew you... I have been changed for good...

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Thursday, May 24, 2012

What is Healthy?

So I think I am in a period of transition. I recently went back to school at the Institute for Integrative Nutrition to become a health coach, and it's causing some shifts.

That's right. The sick girl is going to tell other people how to get healthy. Go figure! But no, really, it's an idea I'm very excited about. What I most want to do is support families who have children with special needs that benefit from a special diet. In short, there is a great deal of evidence that conditions such as ADD/ADHD and autism may be improved by dietary changes and intervention and I am totally fascinated by that.

Throughout the journey, I've been promised by the school that my life will be revolutionized as well. And it's already happening. Even before I started my studies I had been contemplating changes to our diet. For me, I want to eat much more plant based. For my son, I want to feed him in the healthiest way possible, and that means questioning some of the nutrition "facts" we've been raised with (milk does not always do a body good, folks!). For my husband this means the poor guy is kind of along for the ride as I do all the shopping and cooking... but I want this to be a good thing for him too, both for his health and for his happiness (the man loves him some hamburgers!). So, I can't just make sweeping changes in the house without an uprising. And that's really okay. Slow is better anyway.

Here's the hard part of the conversation: I also want to support my husband to be as healthy as possible because there's a lot on him as our primary financial provider and, let's face it, the one who may at some point solely care for our son. That is not a pleasant conversation. But it's in the back of my mind, always.

And then, there's me. What does it mean to be healthy when you are sick? I have two different thoughts on this, kind of like a devil on one shoulder and an angel on the other.

The little devil reminds me that I was raised on tofu and sprouts and home made yogurt (nasty stuff!) and, well, I got PH anyway! There is a limit to what diet can do and prevent. So screw it, raise a glass, pass the nachos!

And then there's a much more practical side that reminds me that to best fight PH, the rest of me has to be in the best shape possible. Thankfully, I can exercise right now and I love it, so that's good. And I really do love healthy food, unusual foods, and to cook. Eating very healthy is a huge job. There are political and social consequences to consider with the food industry, and I want to vote with my dollar with what I buy. There's the planning and prep. There's making a green smoothy one day and really liking it, and trying something new the next day and gagging and spitting it out. And some days I'm going to have to remind myself that this is worth it - that it will support me to be in top fighting shape for this PH battle.

You hear people say that if you have your health, you have everything? Or you have something go wrong and they say, "Well at least you have your health!". Well, by any definition, I don't have my health. And yet... maybe I do. Because I can still move around and make wise choices and make a decided difference in my outcome. So, screw that quote, because there's more than one way to look at this big picture.

Oh, and if I could loose these damn extra pounds, that would be nice too. Because I am certain that as stubborn as my body has been, if I could shake them, it would be so much better for my heart. And a healthy heart is the ultimate goal here.

Sunday, May 20, 2012

Getting Out of My Own Way

Just an observation... after a pretty intense week, with the incredible Generation Hope meet-up, followed by the devastation caused by the death of a little seven year old patient, Molly, and and a fair amount of fury at another smack-down with my specialty pharmacy company (who failed to deliver medication as scheduled AGAIN), I had reached my limit. I was starting to get a little irrational, as evidenced by my very very short fuse with all things annoying. My Irish temper was rearing its head and I could not decide between curling up in a ball and crying, or hitting something.

And then, I stepped away from it all for the weekend.

It wasn't exactly intentional to do so, in fact it had all been scheduled out before this shit hit the fan, but I took a break from all things PH (except my meds, of course!) After the Saturday run-around with my son, consisting of t-ball practice and a friend's birthday party, I threw my hubby a surprise birthday party on Saturday afternoon and spent today (Sunday) building a beautiful memorial garden for a dear friend who lost her baby girl last fall.

It's just dawned on me that this is the first time in a long time I haven't been focused on advocating for PH. Don't get me wrong, I love what I do. I am so incredibly honored that I even get to do it at all. But when I am advocating for PH, fighting for better care for patients and myself, reading about all the pain this disease causes and trying to help where I can... well, it can wear you down.

I'm not complaining. But I do think I'm having an epiphany of sorts. It's true - you can only care for others if you are caring for yourself.

It just felt good to dedicate a weekend to something else. Maybe I should do that intentionally a little more often.

Tuesday, May 15, 2012

Chasing Dreams, Part Two: This is Where it all Comes Together

In my last post I talked about a whirlwind trip to DC, but the weekend wasn't done yet. Now it was time for the Generation Hope Meet and Greet in NYC.

Joshua and I rented a car and grabbed PHA Staffer Debbie and her sister, fellow patient, Alex. After a great dinner (and fro-yo!) in Silver Spring we were off to NYC... starting at 9pm.

We drove through the night, laughing harder than I have in a really long time, tears streaming down our faces kind of laughing, and arrived in Newark NJ in the middle of the night, tumbling into bed close to 3am.

Then it was up and at 'em again the next morning. I could not have started my morning more perfectly... a knock on my door, and there stood Braden, a fellow patient who had come in to meet up with us. Braden is special to me. A little while back she had contacted me out of the blue because of this blog. She found it in the hospital while being diagnosed. She said it gave her hope. The fact that she reached out to let me know that made this blog all worth it. I started it to make a difference. To educate people, to tell my story, to let them know the crazy ups and downs, and maybe share a laugh about some of it (because if I don't laugh at the absurdity of this crazy disease, and the situations I have come into because of it, I just might loose it). It was incredibly gratifying to know it did make a difference for even one person. In fact, that communication has kept me writing.

 Braden rocks. I mean, I knew I liked her online persona before, but in person it was abundantly clear in about 20 seconds, she and I were going to be fast friends.

Stumbling our way through the Newark to NYC transportation system, we met up with the rest of the Generation Hope crew who had come into the city. All told, 11 patients and three caregivers that day. So cool to see people's eyes light up and to hear the squeals as connections were made with online friends now standing there in person.

Meeting for the first time

 We started at Ellen's Stardust Diner near Times Square with, what else, singing wait staff! From there it was a wander through an outdoor market and into Times Square, ending at a coffee shop on a corner.

Happy Birthday Song!

Here We Are!

 A little later on, it was down to just me, Joshua, Braden, and my very dear friend Wendy (Wendy and I met online three years ago - the first mom/PH patient I was able to connect with, and we've stayed fast friends ever since, even visiting a few times a year. It's been amazing.)

We all talked together quite a bit, and then after a while the conversation sort of broke off. Joshua and I were chatting, and Wendy and Braden began to exchange stories... finding they had so much in common. I could hear the excitement in their voices. I could hear the connections being made. After watching everyone together all day, and especially then, in that moment, it hit me. This is what we started Generation Hope for. This is what it was all about. I watched them hug their goodbyes... and I completely choked up. All of this. These past four years, from feeling so isolated and lonely and frightened out of my mind, to tentatively reaching out, to having crazy cool opportunities to reach out, to seeing all this come together... this... this is what I was meant to be here for. This is why we did what we did with Generation Hope. I honestly don't think I will ever ever forget that day, and especially that moment.

Wendy, Braden, Me, Joshua

We ended our night with seeing RENT! off Broadway... a blog post for another time as that is a show that has had very profound meaning to me since diagnosis.

Can't wait for Conference in Orlando in just over a month!

Monday, May 14, 2012

Chasing Dreams, Part One: Washington, DC

So... the weekend. Everyone is asking me about my weekend. And I've been trying to articulate it, but I can't seem to do it justice. Doesn't mean I won't try though... this blog needs an update anyway.

I have just returned from a marathon four days on the road chasing dreams and seeing some come to fruition. It's a long story, so for today let's just start with Thursday and Friday. Here's what happened...

I got up at 5am on Thursday morning and headed to the train station - bound for Washington, DC. My goal was to visit Capitol Hill and lobby for the Tom Lantos Research and Education Act of 2011.

Take a minute (and two seconds) to view this video and see why it was so important for me to do this... (direct link:

So, I arrived in DC mid-afternoon and hopped a commuter rail to Silver Spring, MD to head to the Pulmonary Hypertension Association where I had a lot of fun seeing staff and holding a few planning meetings for the upcoming 10th Annual International PH Conference. Dinner with one wonderful staffer capped off the evening. If you haven't had a chance to meet some of the PHA staff, you really should. Quite simply, some of the most wonderful people I know.

Friday it was off to Capitol Hill. I met up with the lobbyist, Dane, who is working with PHA and we were headed to the office buildings of the House and Senate.

Outside Senator Blumenthal's Office
It was an interesting experience. We had appointments with two out of three of my representatives. Well, representatives for my representatives. They send their health guys to meet with constituents.

I told my story and Dane covered the legalities of what the bill entails. Everyone was very receptive and nice, but there is much follow-up to do. It's so incredibly easy to contact your representatives and ask them to co-sign this bill. Without co-signers, we don't have a bill. With enough co-signers we are practically guaranteed this bill. Please join us! Simply visit this link and use the directions and even a letter PHA has provided: HERE

We were there on official business and so it was very cool to see the underground transportation systems between the House and the Senate. My only gripe is that security took away my snacks! Apparently, you can't bring food or drink into the Congress building... nuts, seeds, and dried fruit are dangerous stuff (well, the nuts I guess can be, but really??). Oh well... it just made for one very hungry afternoon as there was still much to do that day!

Leaving Capitol Hill shortly before noon, it was back to Silver Spring via the train for probably one of the coolest experience of my life. Fellow PH patient, my good friend Joshua, was waiting for me. Joshua and is one of my closest PH friends and he is one of the people who gets me through. You need that when you're going through this.  It helps that we share a lot of other things in common (our obsession with research on PH, and more simple things... like fabulous food, and mutual childhood crushes on Donny Osmond!) And as I was to find out, we get along in person pretty well too. Actually, we squabble a bit, and he throws little pieces of paper at me and teases me relentlessly... it's kind of like having a brother around. He cracks me up, and I have immense respect for the way he has faced this disease.

 Anyway, we were to go visit United Therapeutics (UT), whose office buildings for their company Lung, LLC just happen to be just around the corner from PHA.

If you're not familiar with United Therapeutics, I suggest you become so. They are an amazing company. They make Remodulin in all its forms, as well as Adcirica, and these two drugs keep a lot of PH patients alive, myself and Joshua included. The company was founded by a woman named Martine Rothblatt. Her daughter has PH and in the early 1990s there were very limited treatments for the disease, and certainly not enough of them. United Therapeutics exists to meet the needs of rare lung diseases, and the research and medications they've come up with since have improved and saved so many lives. I love the history of the company - a mother changing the world for her daughter's condition, and helping so many others along the way.

So, we had this tour scheduled and we really didn't know what to expect.... maybe a walk through some cubicles and a meet and greet with a few staff or something? Oh no. Not at all.

What can I say... they rolled out the red carpet for us. We were met by Clare Miller, the Sales Training and Development Manager, and she introduced us to Patrick. Patrick is a Senior Vice President of Manufacturing with United Therapeutics. 

We got a behind the scenes tour on how Remodulin is made. From this white powder to IV, Sub-Q, or inhaled form (with pill forms and an implantable pump in the works!), this one little medication changed my life. "Little" is a ridiculous understatement, actually. The production, and the impact, is hardly "little". Revolutionary is more like it.

The production process is extremely complex, and the sterile environment it has to be produced in was amazing to see. We couldn't actually go in to any of the production rooms of course, but many had windows where we could peek in behind the scenes.

When you see what goes into this massive production for a drug that really serves a relatively small population, you begin to glimpse why it is so expensive to get and so highly regulated.

From the production tour we headed over to the new buildings - crazy cool place! They take such good care of their staff (light therapy rooms, Japanese tea room, hammocks, and all!). We sat down with Larry Sommerville, Senior VP of Sales and Marketing, and were also pleasantly surprised to be joined by Trish Dixon, Associate Director of Marketing. At this point I needed a Tyvaso break and as I took the nebulizer treatment, Trish walked by and saw it... she couldn't resist popping in and we're so glad she did!

Larry had prepared a series of slides for us, telling us all about United Therapeutics and the companies they hold. Each with a goal of a better today and tomorrow for patients with rare lung diseases. And then they peppered us with questions. What was it like to be a patient? What were our experiences? What did we want them to know? What did we wish could come next or be done differently? I think it's okay to speak for Joshua here and say we both felt immensely gratified at the personal interest they took in us, and in the way they listened.

Larry, Me, Trish, Joshua

From there it was lunch at 3pm (Finally! I was really missing that trail mix!) and back to PHA for phase two of our adventure... details to come soon.