Seaglass79's Blog

Crap Isn’t So Bad, I Guess

August 5, 2010 at 8:44 pm (Uncategorized)

Once again, this woefully under-updated blog stalks my mind until I sit down to write. Thankfully, I have work I am supposed to be doing and wish to procrastinate, so now seems like a good time to give in.

Let’s see… a really cool thing. Okay, freaking amazing thing.

I climb hills. No big deal to the average person, but may as well be Kilimanjaro to a lot of PH patients (more on that another day!). May as well have been Kilimanjaro to me not so long ago.

So, when I last left this blog I was having another Cardiac MRI, but hadn’t got the results back yet. Well I got them, and they were CRAP. I mean rotten. I mean my heart is huge, my hemodynamics suck, and I think medical professionals might turn just a little pale when they see it. I, on the other hand, just get nauseous at the sight of those pictures.

So, I sit in my doctor’s office talking to the nurse practitioner, a woman I have grown to love and admire these past couple of years. I depend on her for straight answers and a soft voice of reason. I’m arguing with her about the results, but really, I’m arguing with myself. I just can’t believe they are so bad, when I feel pretty darn good.

I left the office, got in the car, and cried my eyes out. Then I drove home and cried some more. I may have screamed just a little. Which is weird, because I don’t do that. But the thoughts “I am going to die” did cross my mind. And I had to fight them back with everything in me, and call on everything above me to help that.

See, this past winter, I felt like CRAP. More crappy than I ever have felt before, more crappy than I would admit to anyone else, and (let’s be honest) more crappy than I would even let myself acknowledge. But, if you look back at pictures from this winter and see the pale puffy me, and as I remember how dead on my feet I was feeling a lot of the time, I have to (hate to) admit it.

But then I did a lot of good for me things, like kept up with my acupuncture and holistic treatments, started Tyvaso (see post below), and started exercising. Here’s the amazing part – not just exercising, but like actually working out. Doing the Wii Fit. Jogging. Yes – JOGGING. Not a lot – but a couple of minutes. When I started, that couple of minutes put me on the couch totally dizzy and out of breath, heart pounding. But now that I’ve been at it for a while it is actually getting easy.

I was heart broken that the test results didn’t reflect all that.

So, how do I put together how I feel and how I function with how my tests look? I can’t – but I do attribute it to a higher power (God is very good to me!), the incredible support I receive,  and a whole lot of tenacity on my part too. I don’t think the medical professionals can actually explain all this either. And I’ve decided it doesn’t matter… because look what I can do…

This is the hill I was walking with a friend the first time I ever felt PH symptoms, about three years ago. I was pushing my infant son in a stroller. We got to the top and turned around, and suddenly it happened. I handed off the stroller and knelt to the ground, gasping and heart pounding. My friend said I turned gray. I had no idea what was wrong, but was soon to find out I had severe Pulmonary Hypertension.

A few weeks ago, I went out and climbed that hill again, this time symptom free. The test results may not look any better, but I am  living, walking, breathing proof that there are miracles and the tests only tell you so much.

I leave you with that for now… but I’ve recently returned from the International Pulmonary Hypertension Conference in Orange County, CA, and I really aught to update on that too… which means I’ll have to find another time I really want to procrastinate. Until then… I think I’ll go for a walk.