Friday, April 11, 2014

When PH is the Least of Your Worries

I wrote this several weeks back. And then I didn't publish it. Why? Well... I was wrestling with feelings of faliure and vulnerability. I'm a health coach - I help people get and stay healthy. And I have been sick as a dog for months. If I published this, would people think I'm not good at my job? If I'm so good at this, why can't I get better and stay better? (Even my doctors are stumped, by the way). Nothing I've been dealing with is PH related. Maybe auto-immune though... we're just not sure.

And while these feelings of inadequacy were authentic, I'm also being too hard on myself. What I really preach is facing whatever you're handed head on and powering through it however you can. Always thinking outside the box. Always believing your body is capable of more than it might feel it can be. Always believing that if you look and work hard enough, you can re-gain control on some level.

So, anyway, I'm publishing this NOW. And I'm owning the fact that I am going through something that is beyond my skill set, and even the skill sets of my doctors so far. And I'm claiming the fact that I'll get better again anyway. Yeah... I can do this. Soon would be nice.


So, let's make a deal. When you get PH (or any other rare, life-threatening, incurable, blah-blah-blah illness), you get a FREE pass. That's it! No more medical drama. You only have to deal with that one thing. Sound good?

I think so too, but alas, it is not to be.

This last... er, several months, have been a doozy. Let's highlight since November:

Auto-immune flare (I assume), followed by a series of joint issues.

Two viral infections and a bacterial infection - all at once. Recover, get a good two weeks reprieve.

A cold. Recover.

Flu-like illness: high fever, pounding head, clogged sinuses, the works. Recover, get about four good days, and then re-lapse which turns into...

A peritonsillar abscess: Walk-in clinic visit for extreme throat pain where I am then called "Boo-boo" and "Baby" by a highly inappropriate doctor. How do I attract these people?

Subsequent ER visit where, among actual real screw-ups,  I also discover the hard way I am allergic to morphine, followed by an attempt at oral antibiotics which again I discover the hard way I am allergic to, followed by new antibiotics which work but "require extra monitoring with pulmonary hypertension" - yes that was actually in the medication literature. I assume my corresponding bouts of dizziness can be attributed here.

My dentist also informs me this particular abscess is what killed George Washington. While it turns out she may be using old info, this is still illustrative of how fun such an event is.

Again, I get about four good days. And then the throat pain returns. I tried really hard to handle it, and succeeded really well in fighting it back for a few days. But, a night of violent puking thanks to something that disagreed with me put me over the edge.

Back to a new walk-in clinic. Ever see a doctor who is hearing a PH heartbeat for the first time? I have! But at first I thought he was just freaking out because he suspected an infection in my heart, courtesy of the above string of illness, which is what he said he thought it was, and that freaked me out too. And I got another fast-tracked trip to the ER.

I am fine. Just fine. (Well, except for the new case of strep throat - the only thing that came from ER visit #2). The wonky heart sounds are mine, normal for me, courtesy of PH. And I am so freaking sick of being sick. I can't figure out what's wrong, and neither can my doctors. And since I've seen no less than ten doctors and PAs of various specialties and modalities in the last month in an attempt to get well, it's safe to say this is a mystery.

I am normally really really good at staying healthy. In fact, I haven't had more than a cold since 2009. That's a darn good run, especially for PH! And I'm good at helping other people to stay healthy, and even regain health. Why I can't solve this eludes me - I'm using all my tricks and then some.

So, I've battled several more colds since I first wrote this, and on good days I work (on bad days I've worked a lot too), I've traveled quite a bit, I'm still a mom who had to get food on the table and attend to the kiddo. And I'm still desperately working on what I'm usually good at - being healthy in spite of PH. I'm even exercising at full tilt again, after a necessary several months off. Sometimes I think I'm a weeble wobble... down, up, down, up...

Oh, and I've discovered I am a difficult patient. But I promise I don't mean to be. Maybe I get a bit snarky when ill. And maybe it is because every time I have to deal with medical professionals when I am in trouble, I have the following conversations. Here, for your enjoyment.

Question: "On a scale of 1 - 10 how bad is your pain?"
Answer: "I gave birth and it took 37 hours. My perception is skewed. Please define pain." (What I'm really saying is I have a ridiculously good pain tolerance and I am not a good judge when I am in crisis because I put up with too much).

Statement: "Oh no! You can't possibly have (insert rare illness complication here), that's really really rare,"
Answer: "Yup. And I got PH at a one in a million chance. Rare happens to me. Let's check anyway." (What I am really saying is check anyway. Because it is obvious statistics and me are not a good match.)

Statement: "Well, we're just going to hang a bag of fluids to that IV now."
Answer: "Nope. No way. It might kill me. No... Really... No. Can I have some water, please?" (What I am really saying is I know you are a fantastically wonderful and caring and skilled medical professional and you STILL don't see many PH patients and you STILL might kill me if you hang that thing to an IV. Don't.)

Seriously, this had better be it for a while.

Monday, April 7, 2014

Facing a Fear

Did you know that the fear of public speaking is often cited as the second most common fear amongst humans?

Yeah, #2 (Flying is #1). That means people are more afraid of public speaking than snakes, spiders, (or octopus if you're me), and even death.

Well, I understand that fear! Despite both a theater and teaching background, for the longest time the idea of standing up in front of a crowd and delivering a speech, which somehow has to be so much more refined and ideally powerful than teaching a lesson to six-year-olds, or reciting lines and... ahhhhhhh!!

Seriously, I have been known to shake in my stilettos before, during, and after (okay, stilettos are a poor choice for such an event). I have been actually able to feel my heart trying to escape my chest, and it isn't the PH at play.

None of that mattered though when I was approached prior to the PHA International Conference of 2012 and asked to be the keynote for the Founders' Dinner. Oh sure, all the fear flashed through my head, but how does one turn something like that down?

So, I said yes. And continued to freak out. And wrote and re-wrote and re-wrote a speech. Then my best friend edited it, and my mom gave me a brilliant idea on how to practice, and another friend snapped me back to reality and out of a potential melt-down a few days before, and another friend insisted in putting a glass of wine in my hand just prior to delivery, and... well, I didn't keel to the floor after all.

And now, public speaking doesn't bother me so much. In fact, I kind of dig it.

So, this speech is dedicated to:

Rachel - my editor, ass-kicker as needed, and best friend since we were 18.
Mom - who knew exactly the trick I would end up needing to practice this enough not to shake.
Joshua - for, as usual, making the frank matter-of-fact observation that made me believe I could do this.
PHA - for, also as usual, trusting me with a task I didn't know how I was going to pull off, but did anyway.
And you, the PH Community - who gave me the strength from the beginning, and make me want to fight harder every day.

Thank you.

Saturday, April 5, 2014

What Drives Us: Making Sense of the Senseless

In 2010 I was attending my first PHA International Conference. I had been asked to sit on stage at a breakfast event, one speaker on a panel of "Next Generation of PHA Leaders", a request that left me rather surprised. At that time, I had no idea about the crazy ride I was embarking on with PHA, or the rolls I would find myself in, still to this day looking behind me thinking, "Don't you want someone else for this? It's just me here..."

Anyway, I was there because of my activity with Generation Hope. The young adult group I helped co-found. Others were there for their fundraising, advocacy, and awareness work. Near me sat a beautiful young lady named Lauren Johnson, just 17 years old.  She was a fundraiser and worked to get her story in the media. She was articulate. She was effective in her efforts. She was full of life.

She died yesterday.

Still in college. Unexpectedly. The best I can gather, after a very rapid decline nobody could see coming. I hadn't spoken to her since that day in 2010, but that doesn't really matter. Because when this happens, it is always personal. Always.

I saw the news pop up on my Facebook newsfeed. The way I most often get word of a passing (totally bizarre). I just stared at her face. Numb.

Yes, this time it is just numb. I feel like I should feel something. And I can't, really. Because if I feel anything through the ones like this - the ones where PH just suddenly strikes and takes someone who seems fine, it opens up a shit storm I don't know how to face. It starts with the knowledge this will happen again and again, and it ends knowing that it could just as easily been me.

So many times, people say to me, "You do so much!"  

My answer: She died from the disease we share. Every month it seems, I watch this happen. So, it isn't enough. Ever.

All I can say is that until I no longer have to feel (or try not to feel) the impact of person after person passing away from my disease, then my fight will never be enough.

Together though... if everyone kicks in more than they are able. Maybe these stories will no longer haunt my days.

In Lauren's own words, "It is hard, because we don't have... something everybody knows, like breast cancer, or diabetes, or tons of different diseases...we have something that nobody really knows, and we're the only ones that can fight for it... We're our own advocates."

This is the link to our video:

Our section starts about 11 minutes in.