Release.

17 02 2015

Dear Sabrina,
You, my friend, have a lot on your plate. You are overwhelmed and stretched too thin. You’re exhausted and ill. You’re in pain. So take it slow, and keep it simple! You were doing really well there, for a while, with the whole letting-yourself-off-the-hook thing, especially when it came to tidiness and housework and everyday BS! What happened? True, you moved into your inlaws giant, cold house, against your will and wishes, because you HAD to when Eric lost his job. Again. And so now, you cohabit with a woman who’s found that old hook you discarded months ago, polished it up a little, and jammed it in, right about at the third rib or so to hang you back up. But WHO GIVES A SHIT IF SHE’S PISSED EVERYDAY ABOUT EVERYTHING! You’ll never change this, or her. You’ll never please her, Eric will never please her, SHE WILL NEVER BE PLEASED, Sabrina. And she and they will never listen, like, LISTEN-listen, and the only form of communication in this house will always be via a door: how loudly it’s slammed. Their disfunction isn’t your disfunction, Sabrina. Don’t take it on as your own. Just take deep breaths, remember that you’re smart and funny and brilliantly witty, and let it go. Tackle your to-do lists in order of what YOU feel is important, not the order of importance dictated by the other people miserably bouncing around this giant house. Be kind, courteous, and do your best to respect the shared space. If they had true love, compassion and empathy in their hearts, they would understand that the lump in your right breast takes priority over the kitchen counters being schmucky. Make that mammo appointment, sweet self! And they’d get it that the abnormal PAP is more worrisome than the girls’ bedroom staying picked up to impossible standards 24-7. Schedule your follow-up PAP, sweet self! They should totally know that chronic fatigue, constant pain, and impossibly uncomfortable constipation keeps you from being able to scrub the bathroom more than twice a week. Make your gastro appointment, sweet self! Sabrina, you have permission to remove the hook, once again, from your side and bat it away. Focus on what you CAN. Focus on finding comfort, joy, grace and gifts. Focus on breathing deeper, stretching longer, walking further and standing straighter. Focus on hugging and kissing and tickling and hand-holding. Focus on making appointments with specialists and getting the kids to the eye doctor and your husband to the dentist and the family to the chiropractor. Focus on staying as happy, healthy and full of life as you possibly can. The people surrounding you are full of their own miseries, and the less miserable you become, Sabrina, the more miserable they will want to make you. They want your company. They don’t want to accept responsibility for their own bubbles, so they’re gonna try to pop yours. Protect your sweet girls and your sweet self from this, Sabrina. Your life depends on it.
Love ALWAYS, your Sweet Self.💋❌⭕️❌⭕️

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Next?!?

28 03 2014

Here I go, blogging on a stupid iPhone. But I’ll do it, this once. I’m feeling a strong pull to get some things out of my heart and into the world. (Maybe one of you blessed readers will send me a pretty computer in the mail to replace the one that a toddler decided to explore and destroy, thus allowing me to share with you in a manner that doesn’t drive me crazy from typing on a phone screen. A phone, people!)

I’m at a pinnacle of sorts. On an edge. A razor’s sharp, shiny edge. One wrong move and I fall hard. Or slice myself right down the middle, from crotch to head? Maybe that.

I came home from the hospital again seven days ago from yet another week-long stay. I’ve stopped writing about my attacks because I doubt they’re interesting to anyone anymore, yeah? But for those of you keeping track, it was a grand total of something like 7 visits (totaling about 48 days or so?) in 2013, and 4 so far for 2014. Each incident brings a new complication, becomes a little harder to treat, requires more intervention. I lose energy, momentum, will, dignity, modesty each time. My body doesn’t feel like mine anymore. There are no more private parts. After as many catheters, monitors, enemas, scopes, and cameras as I’ve had stuck in and on my body, there is just no room for propriety any longer.

I’ve gone through being unresponsive with only 4-6 breaths per minute, prompting the rapid response team to race to my bedside. I’ve laid perfectly still and remained calm while they told me they were about to administer a drug to stop my heart, in the hopes of resetting it and breaking it from the pattern of supra-ventricular tachycardia it was stubbornly racing through. (Feeling your heart straight-up stop is terrifying and exhilarating and I’m almost inclined to recommend it.) I’ve experienced moments of searing nerve pain so excruciating that all I can do is beg the nurse to rip all the clothes off my body, so I squat on the bed naked, minimizing anything coming into contact with my skin, and cry, because no medications stop nerve pain. I’ve watched blood splatter out of my mouth during moments of violent hurling, from the gashes burned into my esophageal track after such constant illness. I’ve had two ports yanked out, and three put in, because after several months of hemetin and dextrose they gunk up and stop working, essentially threatening my dripped-in promise of life.

And these attacks have, for the most, fallen into a neat little pattern. About four days before my period is to start, I usually feel the first twinges of pain. Usually less than 48 hours from that point, I’m hooked up to my machines and pumps and I’m struggling to post squinty smiley pictures on social media to assure everyone I’m fine.

Seeing as the attacks are following such a tidy calendar, the obvious (to many) conclusion is to eliminate that calendar. Take away my cycle. Treat me with hormones. I started talks with one of my doctors, who happens to be a smart, quiet, funny researcher from NIH for whom I have a great deal of respect and fondness, about just this a couple of months ago. In my mind, we were talking about birth control pills (or a shot or IUD or something,) to stop Lady Flo in her tracks. But In his mind, we were not discussing birth control at all.

We were discussing menopause.

Dr. NIH wants to give me a hormonal therapy that will send me into post-menopausal hormone levels. He dropped a few printed pages of a study done on the treatment for AIP, and said “This is what we’ll do. Find a gynecologist to work with and we’ll get stsrted.”

Just like that.

As though facing menopause at 33 is something I shouldn’t take issue with. Sure! Let’s shut the ovaries down! Dry that silly uterus up! Gain weight! Get hot flashes and mood swings! Kill what libido remains after 5 years of chronic illness! Make sex painful and difficult! Get wrinkles and saggy parts! Turn old, now!

Of course it may not be quite that extreme. And I don’t mean to be offensive to women who are menopausal! (I’m being hyperbolic here because I’m sort of panicking, obvi.) I’m not one to say that I’m dreading menopause, WHENEVER THAT MAY NATURALLY HAPPEN.

But y’all. I’m 33. I’m not 100% sure I’m done with my baby making! I’m feeling (other than sick and exhausted and beat-down,) pretty bangin and confident, actually. I’d like to sit in this third-life space for a while, experience my thirties as a 30-something year old. Not having to worry about significantly increased risks of lady-cancers (I already have a greatly increased risk of liver cancer to work with,) with crazy-times mood swings and even less energy that I have now.

Maybe I’m making too big a deal of it .

Maybe I should do it and shut up .

Maybe I can’t.

This has literally stopped me in my tracks. Reading through the study has not encouraged me, with only about a 25% rate of good results, out of only FOURTEEN WOMEN , one of whom died… But if I don’t, then I am selfishly robbing my family of the opportunity to not lose their mother/wife/teacher/housekeeper/meal-maker/laundry-doer monthly to serious illness and recovery.

I don’t know what to do. Obviously I have more research to sift through, but it’s hard to come by, and no clear answers are going to glare at me from the pages of study summaries . I have a strong feeling that my decision will ultimately be made from my gut. The one that bleeds when it’s upset with me. My heart. My silly heart that beats too fast and too hard and needs round- the- clock monitoring at times.

This is the beginning of the end of living in denial for me.

You see, I truly have been in denial since I was diagnosed. You may not think I have, but I have. Each time I experience an attack , I think it’s the last (you’d really think I’d have caught on after the 12th or so hospitalization…) And I have a deeply buried belief that I am responsible for being ill, that my symptoms are not some disease that I innocently inherited through no fault of my own, but that are manifestations of my own poor decisions and sins. And that porphyria wouldn’t rule my life if only I didn’t let it.

It’s time to face my life head-on now. Either find a way to live peacefully with the disease , or find the fortitude (and energy and money) to fight the disease. I think there are merits in both. Validity in wanting rest and surrender and passivity, and validity in not wanting to roll over and settle for this as a way of life.

Which way will I go?

It’s time to make some choices.

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New AIP treatment in the works?!?

22 05 2013

I got an interesting email yesterday. It’s really technical, but here’s the exact text, straight from the American Porphyria Foundation:

Alnylams Pharmaceutical presented data on their new AIP treatment at the recent International Porphyria Congress in Lucerne Switzerland.

In pre-clinical models of the human disease, they demonstrated RNAi therapeutics targeting ALAS-1 can completely block the abnormal production of toxic intermediates of the heme biosynthesis pathway that cause the symptoms and disease pathology of AIP.

They expect to identify a final development candidate by late 2013 and advance ALN-AS1 into the clinic in 2014. ALN-AS1 is a subcutaneous RNAi therapeutic targeting aminolevulinate synthase-1 (ALAS-1) for the treatment of acute intermittent porphyria (AIP), an ultra-rare genetic disease. ALN-AS1 has the potential to be a therapy for the treatment of acute porphyria attacks, as well as a prophylactic approach for the prevention of recurrent attacks.

To view the presentations from Alnylam and Dr. Robert Desnick’s Mount Sinai team, see below: Note that Protect the Future doctor, Dr. Makiko Yasuda, made the following presentation on the Mount Sinai research.

http://www.alnylam.com/capella/wp-content/uploads/2013/01/Desnick-AS1-PorphyriaCongress-May2013.pdf

Alnylams presentation:

http://www.alnylam.com/capella/wp-content/uploads/2013/01/ALNY-Porphyria-AS1-Pres-May17-2013.pdf

Visit the Alnylam site and read details of this exciting news:

http://www.alnylam.com

Now, what I think this means, is that a new treatment, that happens to be some sort of subcutaneous device (?) can treat an attack more effectively than hemetin and glucose, and when used as a preventative, can provide two weeks or more of protection against triggers. I come to this conclusion after reading through the PowerPoint presentations and, while I’m no doctor, I’ve been around a lot of them lately. And I think I’ve picked up some of the foreign language they speak, known as medicalese. It’s a difficult, awkward, overly-verbose and nonsensical language, often scribbled illegibly. If you have more experience with this highly coded and secretive language, and better understand what the hell those PowerPoints are saying, please do share.
But, if I’m correct, and I think I am (wink wink) then maybe this means an end to weekly infusions in the future? Maybe it means every few weeks, I can just go get a little injection or something? That would be… Life-changing. Huge.
I’ll keep you updated on any more news about the study as I get it.





A girl at every port…

17 05 2013

So I’m home and re-ported now! The surgery went well. I was at least not awake this time. (I’ll have to share the story of getting the infected port out with no sedation next post…)
I know the staff of IR (interventional radiology) well now, thanks to a cranky old port that required quite a bit of… intervention. So I felt pretty comfortable going into it this time. After some back-and-forth with the anesthesiologist about which drugs we could and couldn’t use, we landed on a pretty simple plan.
In the freezing cold theater of IR (I came prepared this time with wool socks,) he started me with a hefty dose of fentanyl to take the edge off. It made me relaxed and friendly. We were all besties there for a few minutes, me and my anesthesiologist and nurses. I shared my hopes and dreams, funny stories, embarrassing stories, dark secrets, and promised to name my next child after them all. Then he gave me the actual anesthetic and that was that.
I woke up asking for more of it.
I remember them telling me it’s what killed Michael Jackson, see why he liked it so much, hahaha… Geez. Glad they didn’t mention that little nugget of trivia before sending it into my bloodstream.
I felt good and woozy for a whole, then the pain came, so they generously dosed me up with some toredol and morphine. After an hour or so of laying around and nibbling gluten free pretzels, I decided it was time to go. I stood up and promptly decided it was in fact not time to go.
There it was… The sea legs and double vision and nausea and floppy muscles.
I’m home now and still a bit woozy, but I’ve managed to eat something decent, but the morphine has worn off and my chest and neck hurt like a bitch. I forgot how bad this hurt the first time! It absolutely sucks folks! Good thing I have a cabinet full of narcotics, which I’ll be dipping into momentarily.
Before I go, I leave you with a treat. They removed the picc line after surgery was over (they used it during surgery instead of starting an IV.) And pulling a picc seems so closely related to extracting a giant blackhead, so Eric couldn’t resist taping it for your viewing pleasure 🙂 Click here to watch it.
Enjoy!

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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.

Oops.

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.

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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.

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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

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 ;)}





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.