Moving right along…

12 02 2012

Hiya.

I’m thinking of coming back.

I took a year off from blogging, in case you didn’t notice. I had a baby, and a million obligations, and I’m no Amanda Soule.

But maybe I’ll come back here now.

A WHOLE LOT has happened. Life-wise and porphyria-wise. And as I’ve been searching for my own answers and solutions lately, I’ve been thinking that maybe, just maybe, some of my questions could be someone else’s answers, because things tend to work that way. And maybe it’s not fair for me to be withholding my experiences, since there is so very little out there about my disease.

So shall I go way back to a year ago, and start fresh? And leave you with a cliffhanger to entice you to tune back in?

Yes, I think I shall.

The last post I entered was announcing Esther Pearl’s birth. She’s 13 months now. A little stinker, she is. Crawling at 6 months, climbing onto the kitchen counters at 8 months, walking at 10 months, and trading stocks at 12 months.

Esther Pearl, the Stinker.

After she was born, I stayed home for a couple of weeks, snuggling, sleeping, loving the new little pumpkin. And recovering from my vagina being completely ripped to pieces by a human being who was a little bit stuck in me for a lot too long. Recovery seemed slower this time than with Adelaide. Maybe because this time my age started with a 3? But for whatever reason, I dragged. I crept back to life, one hesitant little step at a time (being careful to never spread my legs too far lest I, ahem, rip things back open. Sorry.) I was really, really happy though. I can remember standing at the kitchen sink, wearing the baby on my chest, hearing Eric and Adelaide giggling in the next room, and weeping with joy because I was now a Mother Of Two, hand-washing dishes and scraping poop out of cloth diapers!

Yeah, that didn’t last long.

Eventually I got back into the swing of things, taking Adelaide to co-op, teaching flute, trying to make it to the Unitarian Church now and then, dragging Adelaide around the neighborhood on a sled whenever we got an inch of snow. And the winter blues caught up with me, though  not as severely as in years past. I had a few days of feeling stuck and sad and I’d cry for no reason, but those days would pass quickly and I made it through relatively depression-free.

I’m thinking somewhere along there, in late Feb or early March, I got a little sick,  and started feeling a bit porphy. So I resumed my weekly hematin infusions. Remember, I’d stopped them while pregnant because of a lack of information about the effects of hematin on a fetus. But I went as long as I possibly could after having her, until I was finally feeling the effects of not getting it. I remember being afraid that it would make my milk taste bad, and that she wouldn’t want to nurse (which would be a problem, since she’s never, ever accepted a bottle. By the way, as a side note, this means that to this day, Eric and I have yet to get a proper date night. Just so ya know.) But my worries were in vain. Even if the stuff did make my milk taste off, after spending 3 or 4 hours away from her food source, which wasn’t something she was used to, she was happy to have her boobs back and nursing was never an issue.

I think I kind of coasted along for the next couple of months, but stayed kind of sick-ish. Like, virusy and infectiony. Then, one night in mid-may, after spending a few days flying solo since Eric was out of town for work, I had a really, really, long day. I was asked to perform in an alumni flute choir performance for my former flute teacher from the Governor’s School for the Arts, who was retiring. I’d spent 2 days in a practicing frenzy. The alum pulling it together, who had actually graduated, like, the year before, who was currently studying flute somewhere fancy, picked the piece and sent me the music, via email, literally 2 days  before the performance. This wouldn’t usually be a problem for me, as I’m generally good at sight-reading and flubbing through, except that in this case, she picked something “simple”, and by “simple” she meant Senior Recital for Julliard simple. So, I did what I could to practice it, hoping that 180 tempo would manifest in something like a, I don’t know, 60 tempo, and figured there’d be plenty of alum there to play over me and I could just “pretend” on the fast, fancy runs.

She’d asked me to show up at the big theater hall at 2pm to rehearse, so I arranged for my parents to watch Adelaide, and I strapped EP on and walked in to the practice room, to find that the alum group consisted of me and about 4 other people. All of whom were exactly 19 years old. They stared at me with my baby carrier and raised their little teenage eyebrows, saying um? that’s, like, cute? um? is it, like, a boy?

Awesome.

I was told I’d be taking the second flute part by myself. I felt the sweat immediately run down my legs, Christina Aguilera style. Whatever. Only the most important musicians and teachers from my high school years would be gathered there that evening to take in the performance. No pressure.

We practiced for all of about 10 minutes, when the non-human prodigy college freshmen decided they’d rather be texting than practicing. So I walked across the street to  find something to eat, which resulted in a wilted bowl of lettuce with dry slivers of carrots and a quarter of hard tomato from Wendys because thats what happens when youre gluten-free and vegetarian. Knowing my stress level was up, and I’d been plagued with what felt like a UTI for weeks, I knew I needed to carb-load to stave off the porphy monsters, but I think all I could manage to find carb-wise was soda or something.

Anyway, the performance was supposed to take place after the GSA Orchestra concert at a special surprise reception. So, the concert stared at 7, and I had my parents bring Adelaide and meet me at 8 (she loves to watch me perform,) thinking the concert would be over around 8:30, the reception would start, I’d play, and be out the door by 9:15.

Well.

The concert lasted until 9:30. The reception didn’t start until 10. And then the 19 year olds told me we were playing at the end of the reception. My poor little girls lasted and lasted and lasted, until 10:30 or so, and, just as I was told we’d be going on in 5, EP melted. the heck. down. In a panic, I stepped out, nursed her,  begging her to pleeeeeease just fall asleep, and she conked out JUST as someone opened the door to say I was on.

I strapped her into the Ergo, her little sleepy head flopping back, and walked onstage. I played. Everyone thought it was the cutest thing ever. I smiled. I bowed. I grabbed my stuff and got the hell out of there.

Can you see the little bump on the front of me, second from left? That's a sleeping EP.

On the way home, I felt that ickiness that happens when a fever’s starting in. The heebie jeebies in my hips. The shivers. By the time I walked through my front door, my throat was scratchy. I kept telling myself I was just exhausted. I fought two little over-tired, cranky girls whose sleep schedules were completely off, into bed somehow. Eric was actually due to arrive in the middle of the night. I tried to sit up in bed and wait for him. By the time he got home at 2am, I was a shivering, sweating, lump of feverish mess with a blazing throat and delerium.

He spent the next day trying to nurse me back to health. We were both thinking it, but neither of us were saying it. We knew it was the perfect formula for an attack.

By noon, the popsicle he’d talked me into ingesting was making its  second appearance.

Then the back and abdominal pain hit, and between that and my throat, it was too much for me to handle. By the way, ever throw up violently when you had a sore- no, fire-breathing-needles-in-your-tonsils throat? It sucks, is what it does.

Eric didn’t like where it was going. He wanted me on pain meds and in the ER asap. I wanted to stay home with my 5 month old and avoid pain meds because of her refusal to accept any other form of nourishment than my actual boobs.

So, did I stay or did I go?….

And there’s that cliffhanger!

{Thanks for reading again. I think I’m going to be glad I came back ;)}