Shrinking… shrinking…shrunk.

12 08 2013

This post has been sitting, unpublished, for quite some time. It’s been tricky for me to hit the post button on this one. But, here I am, in bed, on dilaudid, facing the possibility that I may be checking in for my fourth (FOURTH!) hospital stay of 2013, and it seemed a good time to let this one out there…

I have a really good dishwasher now. I’ve never had one before. This one has all sorts of settings, like how hot you want the water to be, how sanitary the dishes should be when they’re done (which, by the way, does this mean that dishes typically emerge un-sanitary?) and how long you want it to wash for, when you want it to start, and what you’d like for breakfast in the morning. Before, my dishwashers were just on and off. And they just picked up the grime from the dirty dishes, swirled the grime around a bunch to mix it into a brown grime batter, and redistributed it on all the dishes, so I could have the pleasure of standing at the sink for another hour chipping dry grime batter off all the dishes as they came out of the dishwasher.

But this one is different. This is a DISHWASHER. If I set it on super hot, sanitary rinse, heated dry, extra forceful water-guzzle-put-a-hole-in-the-ozone setting, I can drop completely full bowls of cereal in that puppy and have squeaky clean dishes an hour and a half later. It’s awesome.

Except for one thing.

After running it like that for the first time, I was unloading the dishes and putting them away. I have an über-organized container cabinet. It’s the only thing in my life that’s über-organized, and I’m crazy about it. Lids go on the containers, and they are stacked by type and size. None of this nesting the containers inside each other, letting the lids go all willy-nilly mess. And if by some act of God I lose a lid or a container, and I end up with a floater, it stays tucked away to the side for about a week, giving its partner a little time to show up under the kids’ bed, before it goes to the trash. I will not tolerate uncoupled containers or lids.

So, I’m unloading dishes. I pick up a glass container and its respective plastic lid. I try to pop the lid on as I spin around to place it in the cabinet. But the lid won’t go on. I look in the dishwasher, study the lid, look at the brand of the container, double checking I have the right pair. I do. I try again, and it won’t go on. I put it down on the counter and push on one side. It pops into place. I push on the other side, and it pops into place, but the first side pops up. So I push it down again, but this just sends the other side back up. I stood there, like a fool, pushing on this lid, going around in circles, for a solid five minutes, with little tantrum breaks. I was being pranked, I felt sure.

After it sunk in that if someone really wanted to Ashton Kutcher me, Tupperware wouldn’t have been at the top of their list, the reality of the situation came into focus. My crazy dishwasher and it’s boiling water had shrunk the lid of the container, just a tad. Enough to send me into crazy-times in my kitchen that morning.

The pieces went into the recycling bin.

This is a post that’s been weighing on my mind for quite some time. It’s not a post about dishwashers. It’s a post about money. Specifically, what role money plays in the lives of those with long-term serious illness.

It’s a subject that rarely gets mentioned in any sort of a relevant way, I feel. Sure, you hear about people on NPR whose lives have been ruined by hundreds of thousands of dollars of devestating medical bills, who’ve gone through bankruptcy again and again and lost their homes and jobs and insurance won’t cover their life-saving treatment. It happens to good people. People who don’t deserve it. It’s a horrific situation.

You also see people all over social media raising money for the kid down the street with cancer, or the mom who got hit by a car and is in a coma, or the soldier who came back maimed and can’t work. And those people have thousands of dollars raised for them by caring individuals in their communities and annonymous well-doers touched by their facebook page and businesses who host fundraisers (and get a shitload of awesome publicity, ahem.) If you’re one of the people who’s given to families in need, I commend you. We need more people like you in the world, who are sensitive to the suffering of others and want to help fellow mankind have an easier walk through the rocky roads of life’s hardships. And if you’re a person who’s been sick, and your friends and families have rallied around you and helped with your medical bills and living expenses and maybe even given you gifts and sent you on vacations, that is awesome and I am happy for you. I really am. Because I know first hand what a stress money issues become on sick people and their families. It can take over your life. Fast.

But most of us are in the middle of these. Most of us either have some insurance, which leaves us with giant co-pays and deductibles and procedures not covered, or don’t have insurance and get hospitals to write off some of the bills and work out payment plans for what’s left over. Either way, we’re drowning in debt that follows us around the rest of our lives, knowing full well we’ll just keep wracking up more debt for as long as we live, and we probably have less income than we used to, because we miss work and miss pay, or our spouses have to take time off to care for us, and we’re trying so, so hard to squeeze the lid on the container. It used to fit! It IS the lid that came with the container! But now there just isn’t enough lid to squeeze around the rim. What happened?

This is my monthly budget: Every single paycheck, I write down what expenses we have, then I subtract them all from the paycheck amount, and then I use the negative number I end up with at the end to revisit the expenses and determine what’s not going to get paid this time.

If we have an emergency, and we always do, forget it. We either can pay for it and sacrifice another bill, or we can not pay for it. We most often opt to not pay for it.

Many of us with diseases live like this. Many of us get hospital and doctor and lab bills every day in the mail that we throw into a pile on the kitchen table. When that pile gets too big, we move it to the BIG pile in the office. When that pile gets too big, we box it up and throw the box in the basement. Which we periodically dump out and frantically search through when we need a copy of a birth certificate or car title or something because we can never find those stupid things. (Or, that’s just me ?)

Many of us don’t answer 800 numbers, or any number we don’t recognize, because we know it’s a bill collector. Many of us write and re-write and re-re-write the numbers in different orders, hoping to somehow make it all add up. Many of us ponder bankruptcy, but feel like we maybe aren’t really there yet(?). Many of us grapple with the decision of whether or not we should try to work and risk our health for the sake of paying bills, and risk losing our tiny disability payments and Medicare that we spent 3 years fighting to get. Many of us are seized by guilt every moment of our lives for the burden we’ve placed on our families.

Money is so paradoxically personal, and yet on display, in American culture. Polite people don’t really talk about it. You’re not supposed to tell people how much you make, or how much you spend. You’re just supposed to look like you make and spend an appropriate amount, whatever that is. Eric and I have been struggling with money for years. We’ve spent a lot of our lives trying to hide that fact from people we know, making excuses for why we can’t go to Bermuda for a wedding or rent a beach cottage with friends or why we just “needed some more time to try to find the right place” when we moved in with his parents. Fact is, we’re broke. Some of it has to do with bad money management habits, not being frugal enough, not saving the right amounts.

But mostly, these days, it’s because of my disease.

If I was well:

-I could work at least part time and make good money. Enough to fill in the gaps anyway, and even save a little. I’m educated! I could earn a few bucks. I did, before I got sick.

-I may have been in a position to upgrade my busted computer and software so I could continue to do some freelance graphic design, and my kids would have a better tool for educational purposes. Instead we struggle with an old, broken down machine that’s beyond software upgrades and is useless to half of the internet, and can’t run Adobe programs without checking out to race its engines every five minutes before ultimately just giving up all together.

-I would never have gotten to the point of having a credit score in the double digits that feels beyond repair with loads of medical bills. And, by the way, if anyone ever tells you that medical debt doesn’t matter on your credit report, they’re lying! They don’t know what they’re talking about! Come talk to me and I’ll let you ride in my 23% APR car that I had to buy with my awesome medical bill credit history.

-I wouldn’t be so desensitized to medical bills that I just made no effort anymore with them. When you have ONE, and they ask you to set up a payment plan, ok. That’s doable. When you have 25, and they all want you to set up a payment plan of $20 or $50 or $100 a month, not so doable. So you just ignore them all. I’ve devoted way more energy and time into correcting insurance mistakes, billing errors, applying for aid, reapplying for aid, etc. than I have to just trying to be as healthy as I can. Seems like a bad deal for the insurance companies to me, when the stress they create literally makes me sicker, but what do I know about the big bad insurance industry?

-We probably wouldn’t have been in such a pinch when Eric had a dental emergency a few years back, and left us with a huge bill we couldn’t pay. And dentists, unlike hospitals, are under no obligation to accept your payment-plan plans, and can insist on nothing less than two payments of half over two months, or nothing at all, which is what ours did, so we paid nothing and three years later without warning they started garnishing it from his wages, so our paychecks have been hundreds of dollars less than they should be the last couple of months.

-And maybe we’d have some savings so that when Eric went to a good accountant to have his taxes done and found mistakes from years past that meant we owed a bunch of money, we could have paid it then and there. Instead, we offered payment plans (are you seeing a payment plan theme in my life yet?) and while the federal government accepted it and now deducts a relatively small amount from our bank account every month for the rest of forever, the state government just didn’t, and again, started garnishing wages, so that our already smaller paychecks lost another couple of hundreds of bucks for a few months.

So let me do that vague math for you: Our income is almost $1000 short per month these days.

I don’t care how much you make, that’s a pretty devastating shortage. Trying to hide that sort of financial crisis just doesn’t work. It’s rent that can’t get paid, kids that don’t get to go to summer camp, internet that gets turned off, gas that can’t get put in the tank, groceries that don’t get bought. It’s not hide-able.

But I’ve been (almost literally) killing myself to pretend like everything is ok. We have a lovely (rental) home and a car in the driveway, kids who do the summer reading program at the library, a guy who goes to work in a suit and tie everyday, a mama who goes to yoga twice a week (which she gets for free in exchange for doing some work for the studio) so everything looks perfect from the outside.

But we are so -not- perfect. I am crumbling. I am fatigued from trying to squeeze this lid on my life. I’m sweating, out of breath, trembling, with bleeding blisters on my fingers, trying to make this lid bigger than it is.

And so I’ve started telling my friends. I just couldn’t pretend anymore that things were fine. And you know what I started finding out? Many of them aren’t fine either. They’re struggling to pay off student loans and car payments and and it gives them nightmares, or they’ve ruined their credit scores by ignoring their Target card statements, or they’ve got a mortgage bigger than they can handle and they’re living off their 401K.

But we all put on our lipstick, fill our wine glasses, and smile and chat about lawn mowing services.

For REAL y’all?

Look, if we all suck with money, then we need to acknowledge it, stop judging each other, and stop comparing our own insides to other people’s outsides. ESPECIALLY those of us who are struggling with illness. Money is a source of stress, and stress is poison to a sick person’s body. Lying is also a source of stress. Money and lying together are enough to shut you down.

And if you’re one of the ones who DOESN’T suck with money, help a sick sister out! And I don’t mean by giving your money away. (Fundraisers are nice, but I wonder how much they help people in the long run?) I mean by supporting your friends who aren’t doing so well in other ways. Like, first off, don’t invite us to the Bahamas. We can’t go. Instead, come over to our houses, bring us booze, sit down at the table with us, and help us work out our budget. Tell us what you’ve done to get your finances in order. Talk to your rich friends to find out if anyone is, or uses, a good fee-only financial adviser who will donate their services for a short time to help get things on track. Offer to babysit for free if we need our spouses to get a second job to cover expenses but the thought of being home alone with the kids for 20 more hours a week is terrifying. Help us sort through medical bills and call hospitals to make sure everything is being billed correctly, because that alone can be a full time job. Cook us dinner once a week, because time with friends is like medicine, nights out on the town are just not an option for those of us who are financially challenged, and saving the cost of even one meal can be helpful to us.

It sucks putting this out there. It does. It’s degrading and embarrassing. I feel like I am too smart for this to be my life. But it is my life. And a few weeks ago, when I was feeling particularly hopeless and I was sobbing to my parents after we had to tell the landlord he was only getting half the rent payment and the next half would come with the next paycheck (hopefully,) I heard myself saying “I am just so terribly disappointed in life. This is not how I thought it was going to be.”

And it got me thinking that I bet most folks who’ve been handed a serious diagnosis are feeling the same thing. Not only are we less able than we’d like to be, less energetic, less clear-headed, more restricted, more isolated, but we’re probably all pretty fucking broke, and angry and sad and stressed out and ashamed of that.

Well, I’m ready to at least stop being ashamed. I may be angry and sad and stressed out still, but I can at least stop being ashamed. How about you? Ready to slap it on your sleeve? “POOR AND PROUD!” Let’s start a movement, y’all.

There’s just absolutely no reason we should pretend to keep up with the Jones’. The Jones’ might be underwater with their upside-down mortgage, paying for their automatic sprinkler service with the credit card that’s almost maxed out, the balance of which they’ll just transfer to the next lowest interest rate offer they get so they can max that one out too, strapped with huge car payments and if anyone loses their job they’re ruined next week. Maybe not, but my point is, you’d never know.

For those of us who are sick, we simply can’t afford to worry about what we can’t afford. If you are the supporter of someone who is sick, please remember that in almost every circumstance, the financial side of disease is just as eroding to our well-being as any physical symptom. Ask us of we’re ok, and listen to us when we say we’re not. That’s all. Listen. Without judgment. Without political agenda. If we can all just admit that the damn lid shrank, toss it out and move on, there’d be a lot less crazy in the kitchen.


Well, then.

13 05 2013

It seems I’ve committed the worst of blogging sins. I’ve started and stopped and started and teased and stopped.

Here’s the thing, folks. Two kids, a crappy computer, lots of weird moves and shuffles in life, and the blog hit the back burner. I’ve thought of it often, and I’ve been asked about it and I get comments every now and then with questions from readers, and I’m always like “one day, I’ll get back to that!”

And a year later…

My last post was a year ago.

My next-to-last post was a year before that.


If you’ll have me, I’d like to tip-toe back into this space. But maybe in a different way?

I like to write. A lot. But your time is precious, and so is mine. And you don’t have time to read epic-length blog posts, and frankly, I don’t have time to write ’em.

But I’ve had so many, many relevant experiences and thoughts and ideas in the last year, and I’d really like to be sharing them again. It’s cathartic to me at the very least. And it’s potentially helpful to some of you.

So let’s try again, K?

Here’s the quick rundown since my last post: That illness I spoke of last? Yeah. Resulted in 4 nights in the hospital, with an attack, step throat, and a staph infection in my bladder. It was SWELL. But the hospital let little 5 month old Esther Pearl stay in the hospital with me, sleeping in my bed, with no interruption to her nursing schedule, Eric in the pull-out chair thingy next to us, so it all worked out ok.

Then life went all roller-coaster on us, and we ended up moving to Alexandria. For Eric’s job. That told him he HAD to move or he’d lose his job. So we lost our house to not lose his job. Then he lost his job anyway. And we were stuck in Alexandria, in what felt like The Most Expensive City In The World in The Most Expensive Apartment Ever.

So that was fun.

(He found a new job after a few months, and he’s doing great now, and we moved out of that dumb expensive apartment and to a more rural area of western Northern Virginia in a great big old stone house with swings and a big yard and a marsh and a creek. It’s all good.)

So, I was ok-ish until spring of last year. Specifically Mother’s Day 2012. The day porphyria came to visit. It apparently decided I needed a Mother’s Day vacay, so we checked into the hospital, porphyria and me. We stayed for 4 days or so. In the end, it was all worth it: The hospital gave me a lovely little Mother’s Day gift of some decorative ceramic measuring spoons from Pier One. Win!

A few months later, in August, another attack slammed me out of nowhere. (OK… Not exactly out of nowhere, but more on that later.) This time, it was my birthday! Weeee! Four nights that time. But again, as with the Mother’s Day gift, the hospital pulled through with gluten free doughnuts stacked up and topped with whipped cream as a special “cake” for me. Even though I was too busy puking to eat it, I was pleased as punch, as it was the first time in YEARS I didn’t have to make my own birthday cake.


My special birthday cake concoction on the left. A regular, glutenous chocolate cake on the right, that they threw in for my visitors. I was told it was the worst cake ever in the history of cakes.

So then on New Year’s Eve, which was also our 5th wedding anniversary, porphyria was all “Oh? Another special day we can spend together? Let’s hold hands!” I woke up New Year’s Eve morning thinking I was going out on the town with my groom-of-five-years. I ended New Year’s Eve in the ER with yet another FALL RISK bracelet on my wrist, pumped full of fun mind-altering drugs, aiming for the little bean-shaped vomit caddy the hospital so generously provides, coming up for air to tell my date (Eric, of course,) stories about the orange children’s chairs floating in the corner of the room. Yep.


Eric took this in between vomits. It was a very fleeting, drug-induced, shit-eating grin. In my head, in that moment, I was probably telling off the imps who kept shaking their little butts in my face. It was a weird night. Pain+Delirium+Narcotics+Fever+Dick Clark’s NYE Special on TV= Weird Freaking Night.

That one was almost a week in l’Hotel l’Hopital, thanks to a very special strain of the Flu From Hell. Not only was a pain pump not keeping up with the ninjas punching me in my stomach, but I couldn’t breathe without some O2 assistance to boot. It was, by far, the scariest, most horrible hospital stay yet, thanks to some serious incompetence on the part of the hospital staff (to be discussed later) and some serious asthmatic behavior on the part of my lungs.

And last, but not least, to round out this last year of getting to know porphyria all the more intimately, I was yet again invited to be a guest of the hospital for 5 days, thanks to an infected port. That was a couple of weeks ago. The port was yanked (without sedation and with very little pain medication, by the way; A really fun story for another post!) IV antibiotics were administered in the hospital for five long, boring days, a picc line was put in, IV antibiotics were continued at home (mostly by my six year old daughter) for another 2 weeks, and now that I have absolutely no sign of flora or fauna or bacteria or fungus or elves in my system whatsoever (thanks to 2+ weeks of shooting powerful antibiotics straight into my veins,) I’m allowed to have a new port put in, which happens this coming Friday.

That’s where I am with this. Two years in a nutshell.

I’d love to share more with you about each of these ordeals, and what I’ve learned (and not learned,) but not here, not today. I’ll feed you little bites, yes? We can do this snippet by snippet.

And when the bullshit explodes like it does, I’ll give you play-by-plays in realtime! No more playing catch up. How does that sound? (Friday should be good, y’all. Watch out! Should I live-Tweet the surgery???)

Don’t be mad at me for disappearing. Let’s just pick up where we left off. Pretend that year didn’t go by. And get ready for some more me!

Moving right along…

12 02 2012


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?


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.


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 ;)}

A Labor of Labor.

18 06 2010

So, I’d been waiting to post until I had something really great to update you on. Specifically, that I’d found a wonderful midwife and my plans for a homebirth were moving along smoothly. But that’s not what’s happening thus far. I’m going a little crazy, though, so I thought I’d take this opportunity to vent. And also, if I’m typing here, I can’t be obsessively checking my email, looking for a reply to one of the sixty-two emails I’ve got floating around out there to various midwives/doulas/birth class instructors, to which I’ve had NO REPLIES THUS FAR!

I thought I had the whole thing wrapped up. As soon as I found out I’m pregnant, I contacted a homebirthing midwifery duo, and explained my situation (porphyria and all,) and asked for a consultation. After our initial appointment, they said they felt comfortable enough with the situation, and trusted my instincts, and trusted that I would keep track of things during my pregnancy with my hematologist. Eric and I discussed whether or not we wanted to even meet with any other midwives. We agreed that we liked them, they seemed willing to take me on, and we just knew they were the right ones for us. So no, we would not even bother interviewing anyone else.

The following week was when I got sick, so I weathered that storm, and when I came out just fine and we knew Babo was fine, we decided we’d contact the midwives and tell them we’d like to sign a contract with them. The only thing holding us back was the price. Homebirthing midwifery care is NOT covered by insurance, (because if we all had our babies at home, how would the hospitals make their money,) so we’d have to come up with the money on our own. Compared to a hospital birth, homebirth is FRACTIONS of the cost, but it’s still a hefty chunk. Their particular rate, which seems to be the going rate around here, is $3000. That covers all prenatal care, the birth, and postnatal care. (Compare that to a hospital birth, with the national average cost being something like $15,000-20,000, JUST for the birth itself.)

So three grand isn’t much, relatively, but it has to be paid in full by the 35th week of pregnancy, and that was going to be a strain on us. So when I emailed them to say we’d like to hire them, I also explained our dire financial situation, in the hopes that perhaps they offered an (unadvertised) sliding scale. I also told them that I’d had a brief attack, but that everything was fine, and now I knew that the worst possible scenario wasn’t as horrible as I thought it’d be.

So, about eight days after I sent that email, I got one back saying that, in light of the recent attack, they were now feeling uncomfortable and hesitant about taking me on. They’d have to discuss it and get back to me. I was crushed. I’d already gone over and over with them how important it is to me to stay out of the hospital, and how my pregnancy is not a “high risk” pregnancy, the way it is for someone, with, say, insulin-dependent diabetes, or someone with, I dunno, a heroin addiction. Really, there’s no risk posed to the pregnancy at all, which I’ve had confirmed by a couple of different hematologists.

I don’t think I have the energy right now to explain all the reasons I believe in homebirth. I just do. It’s safer. It’s better for mom and baby. It’s statistically proven. If you don’t believe me, research it yourself. And don’t believe what your favorite OB says on the matter, because OBs are surgeons, and have been trained that all births are potential emergencies and that babies need to be rescued from the uterus.

For these and many other basic, fundamental reasons, I believe that healthy mothers should be having their babies at home, away from the risk of dangerous interventions and infections that come with hospitals. And I believe that I, in particular, must stay out of the hospital.

Let’s review my triggers: Stress. Medications. Infection. Chemicals. Bleach. Reduced caloric intake.

Let’s look at a hospital: A staff that is not properly prepared to handle natural childbirth, nor is prepared to handle porphyria, which certainly would be STRESS-inducing for me. A staff that is trained that all things should be treated with MEDICATION, especially childbirth. Hospitals are hotbeds of INFECTIONS. The rooms are cleaned with harsh CHEMICALS, and the sheets are BLEACHED til there’s no tomorrow, and there’s no avoiding these two things, no matter what. And in a hospital, women are strictly FORBIDDEN TO EAT while laboring, so that when they have to heroically cut you open and rescue that baby, there’s no food in your stomach to pose a risk of aspiration.

Need I say more?

Now, if there’s some real, true, medical emergency while I’m in labor, I won’t hesitate to transfer to a hospital, if my or my baby’s health or life is in danger. Otherwise, my butt does not belong in a hospital.

After I got that email from the midwives, I twiddled my thumbs, awaiting their decision. After about 12 days of not hearing anything, I finally sent another email, making my case once more, but telling them that if they were at all uncomfortable with me, then we’re not a good fit. I certainly don’t want a midwife around who’s paranoid about treating me.

After another FIVE days or so, I finally got the word from them that would not be taking me on. They only specialize in “low risk” pregnancies. Oh. My. Lord.

How many times do I have to explain this??? I’m NOT HIGH RISK, PEOPLE! Just because I have a disease with a name doesn’t mean something bad will happen. The worse thing that porphyria brings is an attack, right? I feel attacks coming on for days. If I were to have an attack while pregnant, I’d get with my hematologist, and we’d treat it and stop it. Done. It’s not like an attack can come out of absolutely nowhere, and send me in to anaphylactic shock. If something about labor brought on an attack, I’d have plenty of time to deal with it. It’s not going to make me seize up and foam at the mouth all of the sudden. It just doesn’t happen for me that way. Besides, I’m being super careful about carb intake and getting glucose treatments every other week, and my hematologist is seeing me monthly to monitor me.

I really can’t help but think that this is the issue: I am having a homebirth, and something goes “wrong,”… Let’s say the baby turns breach all of the sudden, which is rare but could happen, right? So we decide to transfer to the hospital. Of course, baby being breach has nothing to do with porphyria at all. But we get there, and I tell the OB on call that I’m transferring from a planned homebirth (already a strike against me, since OBs and hospitals are not known for being friendly to HB transfers,) and that I have porphyria, so we’ll have to take a lot of consideration in administering any drugs that may be necessary. Then the medical community has a really good reason to give the midwives all sorts of guff, right? “How dare you take on a patient with porphyria! You never should have taken a high-risk patient!” Then the midwives come under scrutiny just because, and they have to deal with that fallout.

There was a midwife in the area recently who made a couple of decisions differently than the medical community would have liked, and she came under such fire that she decided to stop practicing. On the one hand, I get where these midwives are coming from. If they sense any chance of the medical community being able to give them crap, they back off, in order to preserve their practice and offer homebirthing midwifery care to as many women as possible. But on the other hand, in doing so, plenty of deserving women are robbed of the choice to have their babies at home. AND, we’re subjected to the same big-medicine/insurance/liability game that we’re trying to avoid in the first place.

I’m trying to take this in stride, and just calmly move on to the next option. The problem with that is that there aren’t but so many options around here. So I’ve literally sent emails to every midwife I can find in the area in the last week, and I’ve heard nothing. Not a freaking thing. It’s like I’ve been black-listed or something.

And now I’m 15 weeks pregnant without a practitioner, and I’m not sure what my next move should be. I need some sleep, and I’m certainly not getting any these days.

Keep your fingers crossed for me that someone will A) write me back, and B) trust me. I’m tired of begging people to trust me when it comes to my health and my body. Really, really tired. But I guess I just have to keep on speaking loudly and clearly, until someone stops and listens.

So, that’s where I’ve been….

15 05 2010

So my worst nightmare became a reality.

I had an attack.

While pregnant.

It started a couple of weeks ago I guess. Really, the second I found out I was pregnant, I started feeling shitty. But that’s pregnancy, right? I figured fatigue and nausea were par for the course, and even though I was getting hit harder than I did with Adelaide, I figured it was because I also have porphyria, and maybe it would just be a little more intense.

But then there was the pain.

I remember feeling a little crampy with Adelaide, and being freaked out by it. But this time, when the cramps turned into exercises in deep breathing, I scoured the internets to assure myself that cramping was perfectly normal in early pregnancy. Some is, of course. But not lots. So I thought, well, maybe it’s a UTI. I’m no stranger to those. And it’s pretty common to get bladder infections in pregnancy. So that must be what it is. Yes. UTI.

I went to a Patient First, and told the doctor that I had AIP, was about 7 weeks pregnant, and was having pelvic pain, but no bleeding, and I needed a urine culture. He promptly replied, “What’s porphyria? How do you spell that?” Great.

Culture came back clear as could be. But he said that the symptoms matched with a UTI, so why not try an antibiotic anyway? The first one he suggested was a big two-red-triangle no-no on the porphie unsafe drug list. So he panicked, and rather than rationally and calmly decide on the next best thing, he threw a bottle of amoxicillin at me.

I never took it.

I downed cranberry pills for the next several days, and convinced myself that the pain was easing up. It wasn’t really, though.

By this past Thursday, queasiness had turned into full-fledged nausea, and even a little vomiting, which I still tried to attribute to being knocked up. I took Adelaide to her homeschool co-op, and couldn’t eat because I was so nauseated, and I gritted my teeth through the morning, still in denial that the pain was bad bad bad. By the time we left school, I was so miserable that I cried the whole drive home.

I emailed my hematologist a couple of times that day. First to say that I was freaking out a little about having such strong pregnancy symptoms that were so perfectly mimicking porph symptoms, to which she replied that she was sure everything was fine, and we’d kick up the glucose infusions if we needed and if worse came to worse she’d suggest some pain meds that were safe during pregnancy.

Then I emailed to tell her that taking any pain meds made me really uncomfortable, and I’d rather get hemetin, since it’s “just” a blood product, and not something with neurological effects. She went along with that.

Then I emailed to tell her I was going to the ER because I give up.

So Thursday night, Eric drove me to the Bon Secours ER facility in Harbour View. The plan was to waltz in, announce that I have porphyria, am pregnant, and in increasingly severe discomfort, and required an immediate glucose drip and another urine culture for a UTI, and that I would NOT be accepting any pain meds.

I don’t know what I was thinking.

I did waltz in and do all of that, and explain to several clueless nurses what AIP is. And then the PA on duty swaggered into the room and said “So, when you were in the ER last fall, they were considering celiac sprue. Have they abandoned that idea?”


“Uh, I have porphyria. I need glucose.”

“Yeah, well there’s really no test for porphyria, so you can’t really know if you have it.”


“Uh, yes, there is. And I have it.”

“No, those tests come back with false negatives and positives all the time, so you can’t pay much attention to them.”


“I’ve tested positive twice, and I have Acute Intermittent Porphyria Type II. I NEED GLUCOSE.”

By the way. As for those tests. I looked up my hospital records from my attack in the fall. The preliminary urine tests they ran look for two things that would point to porph: ALA and PBG levels. A normal ALA range is 0-35, and my level was 157. A normal PBG range is 0-8.8. Mine was 130.  hmmph.

So, this was the first time I’d ER’d it since my diagnosis, and I always figured that in the event I needed emergency care, the docs would be glad that I was so educated and absolute about what I needed. I never guessed I’d have to prove to them all over again that I have the freaking disease.

It was obvious to me that this guy saw “porphyria” on my chart and googled it real quick. He ran his own battery of invasive, offensive tests, but as I continued to bombard him with AIP information and medical lingo, he sort of lost his resolve and finally gave in and admitted that I needed a push of glucose. Three hours after I arrived.

So then shift change happened, and doctor number two came in, and I had to do the same thing all over again (although, he was a little quicker to accept my story.) But by that time, I was in really severe pain, with a kickin headache, and I was really, really trying everything I could to get through it without meds. I had an ice pack strapped to my head and was rocking back and forth, trying to get in a trance. And crying. I cried a lot. I finally asked for some tylenol, which doc told me was perfectly safe during pregnancy (I don’t think I ever took any with Adelaide,) and it helped take the edge off the headache. Just enough to let the excruciating abdominal pain really shine through.

So doc starts trying to convince me to take something stronger. He told me that he used to work as an OBGYN, and that opiates are considered perfectly safe during pregnancy. He told me that, in fact, heroin is an opiate, and that moms who use heroin throughout their pregnancies give birth to perfectly healthy babies.

I had a feeling that his idea of healthy and my idea of healthy are two different things.

But after agonizing over the pros and cons of being in severe pain and distress, versus taking an opiate that medical science claims has no effect on a fetus, (and after thrashing and screaming and sweating and not being able to meditate through the pain anymore,) I gave in and accepted a 10 mg morphine drip.

He also recommended an antibiotic drip, since there was a tiny bit of bacteria in my urine, and he told me that UTIs are really dangerous in pregnancy, so treating them is essential.

After these two drips, the pain calmed down, and the puking began.

I puked all the way home, and all through the night. The urinary retention kicked in, too, so every 10 minutes I was on the toilet, pushing little squirts of pee out while Eric did pee-pee dances for me.

The next morning, I woke up and puked. Eric took Adelaide strawberry picking, which had been planned for a week and she was totally excited about, so I didn’t have the heart to tell her she couldn’t go. They came back with big smiles on their faces, and a huge bucket full of bright red, big, juicy strawberries. And red lips.

Eric tried to get a little water/food into me, but I promptly rejected even the most trivial amounts of anything that went in. I entered the puking-up-bile stage, until I was all empty of that, too, and just dry-heaved the rest of the afternoon.

I went to the hospital for my infusion of hemetin and glucose. Again, deciding to get the hemetin was heart-wrenching. There have been no studies on the effects of it on a pregnancy, and it’s recommended that it be avoided by pregnant women, save for only the most dire of situations.

This was dire alright.

Normally, in an attack, I’d get four doses in four days of the hemetin, but my hematologist was not comfortable with that. She only let me have one, in the hopes it’d give me the boost I needed, and we’d follow-up with lots of glucose.

So I knew it’d take a day or two for the hemetin to make any difference, and I went home to suffer. I told Eric I was absolutely NOT going to take any more pain meds, and that he’d have to just help me through it.

But he and my mom couldn’t deal with watching me writhe. My mom decided to get a hold of Jennifer, who was my palliative care nurse when I was hospitalized last fall. On the phone, she first tried to convince me to head to the ER, where I could receive pain meds under supervision. But I told her about my less-than-impressive experience the night before, and adamantly refused to go back. She understood. So she talked me through my options. She explained that receiving the 10mg drip in the ER of morphine was equivalent to about 30mg orally, so if I took 10mg orally at home, it wouldn’t knock me for such a loop. And we sort of hashed out the risks to my unborn that come along with me being in severe agony and distress and anxiety. That’s almost as bad (if not worse) than a chemical. (In fact, another pregnant mom friend of mine had recently told me of an article she read about a study showing that high levels of anxiety are more detrimental to a fetus than alcohol consumption. So we decided we should start a new trend of drinking up. For the sake of the baby.)

I gave in and took a 10mg of my liquid morphine, and it was the perfect amount to take the edge off the pain, let me rest, and not send me into complete lala land.

Rinse and repeat.

I think I took three or four doses over the next couple of days, and each time, I had to have my arm just about twisted off. Eric had to keep reconvincing me that I was making the right decision.

I’m still not sure about that. But what’s done is done.

I got three infusions of glucose this past week, and I’ll get three more next week. It’s not fun. It’s 500 grams of sugar being pumped into me over the course of 30 minutes. I leave the hospital feeling like I could lift cars, and then crash and burn an hour later. Only to then crave massive quantities of cheesecake and ice cream. Sugar is addicting, did you know?

But the pain is 100% gone. The nausea is mild, and what I’d associate with typical first-trimester gunk. I’m tired as hell, but there are ways to deal with that (like plopping Adelaide in front of the TV so I can nap. Several times a day.) Oh, and in the ER, they did an ultrasound of Babo, who appears perfect with a healthy heartbeat. And single. Thank god.

So I’ll raise my glass of sugar water to getting through that, and may it be the only time during this pregnancy I have to go through it. No more drugs for Babo!

National Porphyria Awareness Week Day 2

20 04 2010

I’m very, very tired. Thanks to Babo. So this may be a bit cheeky and incoherent and come across as a not-very-thought-out juvenile rant, but it’s what I’ve got the energy for.

Quit your smokin.

At least around me.

Here’s the thing:

I used to smoke. My husband used to smoke. But I have to say: when I smoked, I like to believe I was a relatively considerate smoker. I didn’t smoke while standing in amusement park lines. I didn’t go to outdoor concerts and light up in the middle of the crowd. I didn’t sit on sidewalks outside of my place of employment and blow smoke on all who entered. And I certainly never even CONSIDERED lighting up when there were children around. Now, I’m positive that more than once, it’s awful likely that my smoke touched someone’s nose who didn’t want it touched. But I at least made huge efforts to avoid that.

And now, as the fates would have it, smoke can make me very,very sick. True, it can make you very, very sick, and everyone in the world. But it can make me FOR REAL, immediately, sick. Me and every other porphie, and asthmatic, and people with allergies, and cancer patients, and folks with Multiple Chemical Sensitivities (which comes along with LOTS of conditions,)… And my message to all you smokers is that you never know who is or was or will be standing next to you, or who is or was or will be forced to pass through your stupid offensive smelly cloud.

You know it’s stupid. You know it’s offensive. And you know it’s smelly. I’m sorry you’re addicted, and I understand that you have the “right”, but puh-leeze. Use the part of your brain that is not yet rotted with tar and think about how you’re affecting all the people around you. (Of course, maybe you flat out don’t care, in which case, I, in turn, wish you many nights of insomniatic hacking.)

The other day, my friend Heather, the other porphie, met me at a playground so that the two year old little girl she babysits could play with my  Adelaide. The playground we chose is a Norfolk City Park playground, which happens to be located directly across the street from the campus of the hospital where she and I get our weekly infusions.

We arrived around 11:45 or 12, and it seemed like a busy little park. But then I realized that our two girls were the only children actually playing on the playground, which was odd, considering the amount of activity around the playground.

Then it dawned on me.

All of the benches were full of hospital employees. In scrubs. Wearing hospital badges. Smoking cigarettes.

Not fewer than ten of the shits.

The hospital campus, which is comprised of Sentara Norfolk General, Eastern Virginia Medical School, and Children’s Hospital of the Kings Daughters, banned smoking several months ago.  Smoking is not allowed anywhere on the property, including the farthest reaches of the most remote parking lots.

So instead, the employees are going across the street to the FREAKING PLAYGROUND so they can blow their nasty shit in our CHILDRENS’ faces.

They even set up a little coffee can ashtray for themselves. Which, later during the day, an 18 month old discovered and picked through before her pregnant mom could hobble over and stop her.

I’m so absolutely appalled by the absolute GAUL of these people. They’re medical professionals, and while I don’t expect them to be perfect in their personal lives, nor do I care if they are, I can’t believe they WANT to humiliate themselves in that way. Because that’s what they’re doing. I, and Heather, and the other moms, had no respect for these doctors and nurses, and if I’d recognized any of them as any of the nurses that treat me, I’d request another nurse. Wouldn’t skip a beat. And how would THAT look their superiors? All I could think was that some of them must work at CHKD, and treat dying children all day, and then use their lunch hour to contaminate the nearest playground with toxic air. Idiots.

I’ll be sending letters to the hospital and the city, asking them to work together to remedy the problem, and it probably won’t make a difference, because it is, after all, an outdoor public space, and I guess people have the “right” to light up there.

I just wish that I had the right to not get sick there.

So next time you’re about to step outside and partake of your nasty little habit in a public space, just please, for my sake, take a half a second to consider who you may be forcing that horrid stuff on. And don’t give me any lecture about your “rights” when I ask you to take your cancer-causing, attack-inducing air pollution elsewhere.

The end.

Calling all vampires!

12 04 2010

I forgot to tell you all about the phlebotomy thing.

So, for whatever reason, getting the hemetin infusions, while good for controlling porph attacks, can also increase hemin levels (duh, right?) which means too much iron. High levels of iron can lead to an attack, and I was even told by my hematologist that she’d like me to stay on the “slightly anemic side.”

So, only a couple of weeks into the treatments, my iron levels were too high (of course, because it’s me, and why wouldn’t they be?) (And also, phtthtthtth to all you people who think that my being vegetarian means I’m a walking medical journal entry for anemia.)

So, when the iron is too high, the way to remedy that is to bleed me. Yep. Take the blood right outta my veins. Stick the leeches on and let ’em go.

Not really leeches.

The nurse used my port, rather than an arm vein, and was supposed to take 20 viles, but could only get to 17 because the port got all backed up with clotting blood.

And here’s what all my blood looks like.

mmmm. bloooood.

Yep. There it is. Just chillin on the table. Ready for the ol’ garbage can. Which I felt totally guilty about, by the way, since there was a patient RIGHT NEXT TO ME getting a blood transfusion. I felt so dirty, like I was burning dollar bills in front of a homeless person or something. (My nurse told me that years ago a patient who got regular phlebs would take the blood home in a plastic freezer bag and use it to fertilize his roses. But hospital regs have since changed and they won’t let me take mine home to fertilize my roses. I asked.)

Yeah, I almost fainted when it was done. Not because of the blood loss. But because of the freaking blood loss. Seeing it all just sitting there in tubes on a table…. It was so strange. Blood is life, you know? I watched it pour out of me and fill up tube after tube and I wondered if they were going to leave me with any, and I sort of symbolically felt my body collapse a little, like it was sinking in on itself. Like a beach ball with an air leak.

It’s a very surreal experience, a phlebotomy. Lucky me, I get to look forward to more!

I have to admit, it was made all the more interesting by the fact that I was, at the time, reading through the stupid Twilight series, and I couldn’t help but note all sorts of dumb irony: the timing of my decision to read my first ever vampire tale (and a lame one, at that,) having my blood sucked, having it sucked because of the disease I have, which is responsible for the myth of vampires in the first place… It’s all just stupidly too much. Seriously, I think I’m growing fangs. Right now.