Sunday, November 14, 2010


Original Date: October 30, 2010

I am such a mess of emotions right now. From angry to humbled and heartsick, it’s been a hell of a ride these last few days.

I’ve spent the last week battling my specialty pharmacy company over a medication delivery. The specialty pharmacy is on my hit list right about now.

Long story short, I followed up on a medication delivery no less than four times, which then never showed up. Once I called customer service and just about set the rep’s ear on fire, I was ASSURED and PROMISED that my medication would be arriving today. Bullshit. None, nada, and I have run out (well, they think I’ve run out, I’ve kept a secret stash from the last time they screwed up, but shhhhhhh!)

I’m annoyed on one level and was (I’ll explain the past tense in a moment) livid on another. See, the thing with this company is that they require that you sign for your delivery of medication. Incidentally, the other specialty pharmacy who handles PH meds does not.

This is problematic on many levels. First of all, I’m not home bound. I’m blessed to feel well enough to live the life I’ve chosen, and that means some mornings I work and others I am out and about with my son. Not everyone with PH gets this choice. My medication allows me to do that.  Staying home for a four hour window for a delivery is a huge inconvenience.

This time though, it got personal. To stay home on Friday for the  medicine delivery that never came I had to miss my son’s preschool Halloween event. It’s a little silly to be upset about something small like that, but the truth is my moments are precious. I believe I will beat this thing  and I will live. But the odds are completely stacked against me. The odds say I’ll be lucky and unlikely to see him out of grade school.  I don’t get to have another kid and do it again, because childbirth is deadly.  So, to miss even a second, when I’ve committed to be there, becomes gut-wrenching for me. I don’t think I even realized how important these moments had become until I was denied one by someone’s stupidity.
I was also going to have to miss his soccer game this morning, but my dear friend and neighbor agreed to be on lookout for the package that still never came so I could go cheer him on. I am really blessed by the friends and family around me.

So, yesterday and this morning I was ready to roll heads. How dare some pharmacy company screw with my life? I got a little Momma Bear, I guess. Or, as my dad says, I really “got my Irish up”.
Then, I log on to facebook. And I find out that a girl whose story I have followed since my diagnosis has died from complications from her PH. She was 21. And now what? I can’t exactly stay mad over an inconvenience caused by my pharmacy company and ultimately my illness when someone else has died because those medications stopped working for her and her transplant attempt failed. Suddenly, my problem seems pretty minuscule in comparison.

So, as I sit here still wiping tears for Becky and her family, I’m reminded even more acutely than I was yesterday how precious every second is. How even as I felt foolish yesterday for being angry at missing some Halloween pictures of a bunch of four-year olds, I was somewhat justified. If we don’t find a cure for this blasted disease, the sadness Becky’s family feels at this moment, is the sadness all our families face, and that’s really hard to swallow.

Go hug someone you love.

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