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.

1 comment:

  1. Hi there! I'm a youngish mother too- I'll be 30 this year. I've been diagnosed with PVH for almost a year now. I found your blog via PHA message board archives and was happy to see you're still blogging! Hopefully your in better health now than when this post was written. I'm suffering from a massively horrible head/chest cold currently. Blah. Nice to "meet" you!