Moving right along…

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 }

Birth Day.

I introduce to you Esther Pearl.

About 30 hours old.

She is perfect in every way.

She was born on December 27, around 12:30 in the afternoon. In a birth tub in our living room.

Her birth story goes a little something like this:

A week or so before my “due date,” which was December 12, and a date I tried very hard to not take seriously AT ALL, my Braxton-Hicks contractions were getting more and more regular and rhythmic. Each night, they’d start up and sometimes come every 7 minutes, and sometimes every 3 minutes. They sort of fooled me a few times, but I wasn’t really buying it. I had a fear during this pregnancy that I would never spontaneously go into labor. See, I wasn’t allowed to with Adelaide. My CNMs (Certified Nurse Midwives, who are hospital midwives in this state,) decided there was an urgent need to induce my labor a day before my due date, so I was hooked up to Pitocin for all 24 hours of my labor. The medical community robbed me of a lot of innate confidence that I had previously held that my body would know how to have a baby, and part of my reason for planning this home birth was to restore some of that.

So for the last three weeks or so of this pregnancy, I was in labor. I went about my days as best I could, working around contractions, and spent the evenings half-timing half-not caring about the contractions, and not sleeping at all. The contractions were never, ever painful. Just taxing. I was exhausted.

Finally, on the Sunday I reached my 42 week mark, with a foot or more of snow on the ground (which NEVER happens around here, mind you,) I decided it was good and time for baby to come out. I wanted to be patient, and trust that babies come when they are ready, but I was getting too tired. AND, there was some reason to believe that something was actually stalling my labor, causing it to putter out each time my body tried to get it going. The baby was in a less-than-perfect position, at times being completely posterior, and perhaps with a head that wasn’t tilted just right. I did exercises to attempt to move her, which helped a little. She turned to the side some for me. And I went to the chiropractor every day of that last week, in hopes of aligning my pelvis, to align her, so that when labor started, it would continue. But on that Sunday, after 24 hours of really regular (painless) contractions, I was wiped out. I needed her to be here.

So a tablespoon of castor oil and some very particular doses of herbs and homeopathics came into play that Sunday evening, around 8:30 or so. And the contractions came, and came, and came. They got closer together, more intense, but never painful. But when I lied down to rest, they’d stop, so I’d take more herbs. And then walk. When I got in the tub to relax, they’d stop. So I’d take more herbs, and walk some more. As long as I was walking, moving, swaying, rocking on the birth ball, dancing on the toilet, the contractions would happen. But I had to work to keep them going. I laughed with my husband, chatted with my friends. I had a rather good time, and was convinced that it wasn’t working because it didn’t hurt. I’d feel a contraction come on, and I’d lean on Eric’s shoulders, and I’d hum and rock my feet back and forth, and envision my cervix opening, opening, opening, and I take a deep breath, and it’d be over. And I’d laugh some more.

Sometime when the sun was up, I was ten centimeters dilated. What? How did that happen? Where was the painful, screaming, I-Can’t-Do-This-Anymore labor that was supposed to tell me I was almost ready to give birth?

So, I started feeling slight urges to push, so I did. But something didn’t feel right about it. I never got to feel that urge with Adelaide, because by the time pushing happened, they’d pumped me full of epidural anesthesia so I’d stop complaining about how horrible the Pitocin was, and the CNM told me when to push and for how long, and I had to trust her that it was working. But this time, I knew my body would lead me in the process. Or, it was supposed to anyway. But I got nervous. I felt the urge, but when I pushed, it didn’t feel right. It didn’t feel effective. I tried and tried and got a little scared. Maybe I couldn’t do it, afterall. I tried for about 45 minutes, and I desperately needed a break. Someone in the room told me to take one. Breath through the next few contractions. Try to relax. Part of my cervix had come back, and I was trying to push against a lip. This happens to us, you know. The sphincter that is the cervix will open when we are relaxed and at peace, and can close right up if we are scared or threatened. I was certainly feeling scared and threatened by my own idea that I was doing something wrong and would end up being transferred to the hospital.

So I took my break and got into the tub in the hopes of relaxing. I got on hands and knees and rested my head on the edge of the tub. And the next contraction that came was amazing. It overwhelmed me with the urge to push. THAT’S what it’s supposed to feel like! I couldn’t stop my body from pushing, no matter how hard I tried. So I pushed. I went with it. And about 10 minutes later, there was a little head ready to emerge. (I pushed for over two hours with Adelaide- thanks to the epidural. So to push for just a few minutes and already have a baby ready to come out blew my mind.) Another push, and a head was born. And then I waited for the next contraction… and it didn’t come. I waited, with this little head hanging out of me, and waited, and waited. I reached down and felt her soft little head, and thought, “Huh. There’s a head alright. Right there between my legs. Huh.” It was actually really about a minute, but it felt like much longer. Not because it was painful or anything. It was just… alarming? Shouldn’t the rest of the baby come out soon? Finally, the next contraction came, and I pushed, and there was some resistance, and then I felt that I was being helped and she was being pulled a little. (I later learned that she had a little bit of shoulder dystocia and needed a little tug.) And then her warm little body slid out, and I heard her squawk at me from behind. I carefully turned around and lifted my leg over the cord, and looked at my baby for the first time, who Eric was holding just above the water’s surface. I took my baby into my arms, and Eric hugged me from behind and we were giddy and amazed and we loved her. We forgot to check if she was a boy or girl, and it was several minutes before we thought to look. (I was certain she was a he, throughout most of my pregnancy. It was a little shocking to see that she wasn’t a he. But a good thing, since we’d long ago landed on a girl’s name, but never did land on a boy’s name!)

After a few minutes of snuggling in the pool, I was helped into the bedroom, all the while holding Esther Pearl as firmly as I could against my chest, and once in bed, her placenta was born. It was placed into a plastic bag and tucked next to us, as she was still attached to it. We would not cut her cord until we were certain that the placenta had finished its job of delivering oxygen and blood to her. I offered her a nipple, and she accepted with vigor. We snuggled and cooed at each other. Maybe an hour (?) or two (?) after her birth, Eric cut her cord, and we weighed her (8 lbs!) and put her first little cloth diaper on her, and wrapped her up in a warm soft blanket, and we rested together.

About 20 minutes after the birth.

She is now three weeks old, and weighs 10 pounds (!!!) and is alert and happy and, well, fairly “easy.” She is never not in someone arms. I wear her in a sling or wrap most of the day (which has been a little bit of a challenge, finding just the right one with just the right fit, to accommodate my weak back.) She sleeps next to me in our bed, as Adelaide did for her first 2 and a half years of her life, and nurses a lot. Adelaide adores her, and comes into the bedroom every morning to hold the baby right away. She loves holding her baby. She sings to her and tickles her toes. And soon, Esther Pearl will smile at her and let her know that she’s watching everything her big sister does.

Laundry on the Line.

As I begin writing this, Adelaide is playing with her dinosaurs on the floor next to me. This is a relatively new thing, that she’ll sit and play by herself without needing my constant attention. Just in time, right?

I’ve been absent from my blog for a bit, sort of on purpose. I’d read over some of my recent posts and found that the spirit of what started this blog was missing. When I started, it was because I had a huge, traumatic thing happen, and my way of coping was to laugh at it. Without finding humor in the situation, it would have been just too much. Too heavy. Too thick. So I chuckled. But after nine months of dealing with a constant, nagging feeling of fatigue and nausea and aches and pains, it got less and less funny. And so did my blog posts.

Not to say that I am or was some great humorist. But I was laughing at myself, and other people told me that they were laughing right along with me, so I think I was accomplishing a little of what I wanted to accomplish.

But then I got more angry than anything, and it bled through.

So, being pregnant, I’ve been very conscientious of this anger. I believe wholeheartedly that it can affect my unborn baby’s health and well-being. And I’ve been afraid that blogging will send me into a tangent that will raise my blood pressure, so I’ve avoided it.

Instead, I’ve been reading and learning and soaking up information about stuff. Not the stuff you’d expect so much, like baby-birthing or my disease. (Although, I do visit mothering.com for nice natural parenting and pregnancy articles, and occasionally I check out babycenter.com to see what size fruit or vegetable Babo is this week. And that’s English cucumber this week, in length.) I’ve been reading blogs and visting sites and checking out books from the library that just make me happy.

SouleMama has been my most favorite in the last couple of months. Amanda Soule is the author of a couple of books about creating things for the home, and she’s got four kids and is apparently perfect in all ways. She really exemplifies what and who I strive to become as a mother and a home-maker (ick. I hate that term.) I mostly find her inspiring and love her recipes and can’t wait to get started on my sewing lessons so I can start making the same dresses for Adelaide that she makes for her daughter, also Adelaide. But sometimes, I have to admit, I kind of a little bit want to smack her. I read about the things the accomplishes in a day with four kids and I look at my own disaster of a moldy kitchen and I decide that jumping off a bridge would be easier than trying to make three homemade meals from scratch each day, and sew a few dresses and take the kids to the beach and teach them where clouds come from in between those meals. But I try to keep it in perspective. Baby steps. I will do what I can when I can. She may have four kids, but she doesn’t have porphyria, dammit.

I’ve also been reading Gluten-Free Girl and the Chef a bunch, trying to glean meal ideas and basic kitchen inspiration. Through this blog, I learned about Udi’s Gluten Free bread. I found it at a local market, and my life has seriously taken a turn for the better. The bread is ~gasp!~ just like real bread! I get to throw together a PB and J for the first time in over a year, and enjoy it!

I’ve found Rhythm of the Home, filled will great articles and tutorials, and a bunch of other blogs and sites that have inspired me to do things like convince my husband to give up TV at dinner so we can sit at the dinner table as a family. He does so a bit reluctantly, but he knows it’s not something he could easily argue with, ya know? And I’ve been cooking huge batches of soups, to eat half now, and freeze half for when I’m too pregnant to cook. For me-time (ha!) I’ve been reading the Girl With the Dragon Tattoo series, instead of escaping to stupid TV that rots my soul and makes me feel mushy. (Although, I did plow through all five seasons of Weeds on Netflix for a couple of weeks there, while I hand-sewed bo0-boo bags and birthday crowns for Adelaide’s fourth birthday. And I have to mention that my ex boyfriend has a role in Weeds, starting in season 5, and continuing this season, which I won’t see until next year because who in the hell can afford cable with premium channels? He’s the crazy anti-abortionist nutjob. On the show. Not in real life. And he’s marvelous and my claim to fame at the moment.)

Now, the days of going to the pool or the beach in the mornings are nearing an end. Adelaide started her two homeschool co-ops this week. She’s loving it. And I’m loving the 3 hours I get to sit and talk to other mammas twice a week while someone else keeps her entertained and educated and discourages running with scissors.

I’ve just decided that, though I hurt a lot, and though I’m often too tired to think straight, and though I spend a day in bed here and there, I cannot give up and decide to just be “sick.” I’ve become dangerously close to identifying myself as the “sick” girl. And once that happens, it’s a hard u-turn to make. I got a good wake-up call recently when I responded to a post on a porph discussion group. A woman wrote to say she’d just found out she was pregnant, and wanted to know if anyone had any experience with dealing with porph while pregnant. She was nervous. I know the feeling.

The first person to respond to her, one of the regulars on the list who seems to have an answer for everything, told her of her own horror stories of being pregnant and having several miscarriages and complicated births and almost dying, etc. She told the woman that specialists are necessary, pregnancy is “dangerous” for “us,” and that homebirths are certainly out of the question. Now, while I certainly feel much sympathy for this woman’s experiences and loss, I didn’t want for the newly pregnant woman to ONLY hear scary things. I can’t imagine how that would have affected me in my early pregnancy! So I pretty quickly responded that I’m currently pregnant, it’s going well, my first pregnancy went well, and when issues arise they can be dealt with in a safe and effective way. And that I am having a homebirth, thank you very much. I encouraged her to explore all of her options, talk to as many doctors, specialists, midwives, doulas, mammas, that she needed to in order to feel comfortable making a decision about her birth choices, and to relax. Enjoy being pregnant and forget about being in control of things.

I got slammed by the old woman who knows it all. I was even accused of not being sick enough! NOT SICK ENOUGH! She questioned whether or not I’d ever had a “real” attack, and basically told me I had no right to speak to any of these issues and was passing along dangerous information.

I never responded to her. I read her blast at me and I realized, right then and there, that I can NEVER turn into that. I don’t care how sick I get. I can never turn into the person who is determined that I’m the sickest, and that I will always be sick no matter what, and that I should give up all hope for being healthful and happy.

And THAT is just why I took a break from everything porph for a while, including my blog. My porph hasn’t taken a break, but I’m certainly not letting it take over. I’ve decided that I’ll try to equalize this space for a bit. Instead of it only being about my health and porph related things, I will make it more about whatever I need it to be about. And, in turn, it will hopefully contribute to my well-being, rather than contribute to my sick-being.

Along those lines, here are a couple of things I’m liking right now:

Boo Boo bags. Handsewn. That's a lot of handsewing.

Jungle Safari AND Fairy Princess Birthday Cake. For the Jungle Safari Fairy Princess.

The 26 Week Bump.

Warming up and drying off, after the last outside pool swim of the year.

And I just can't help but love this.

Coping.

So my official rejection letter came in the mail this week. My Social Security Disability claim was denied. “While your disease causes some mild discomfort, your attacks are infrequent and do not prevent you from working.” So says the person who’s never met me who sits in a cubicle in some nondescript office building somewhere.

I knew to expect this. Seventy per cent of all claims get denied the first time, and have to be appealed. So I’m appealing. I have an appointment with a lawyer (a reputable one. Not one who screamed at me from a commercial during The Price Is Right,) on Wednesday. But even as I was expecting the denial, I wasn’t really prepared for all the things it said about me and my disease in the letter. It was really infuriating. It said that my attacks are being controlled by prescribed medication. No they’re not! My attacks are being controlled by my own diligence in avoiding triggers, and when an attack happens, I have morphine in my pantry. I’ll let them know during the appeal hearing that I’m happy to stay on morphine all the time if they’d like me to, in order to “control” my attack symptoms, and we’ll see who’d like to hire me then!

Anyway, at least I’ve got the letter and can move on with the process.

Otherwise, things have been OK-ish. We hit a pretty stressful time in the lives of the SasserStroms a couple of weeks ago, and it really tested my resolve. I had a couple of days of not being able to stop crying, partly because of what was going on, partly because of hormones, and partly because I knew being upset could make me sick, which just made me more upset. I’ve had some abdominal pain as a result, and I’ve been even more tired than I was, but I’m really, really, really working hard to stay calm. The situation has been resolved for now, and I can breath a little easier, but I’ve learned to expect that with us, there’s always something major around the corner. So finding ways to remain clear and steady and being at peace with the way  things go down is an absolute must for me.

On a positive note, Eric started a new job, which is going well so far. The pay is the best part. We’d been so broke for so long, after losing four jobs between the two of us in the last three years, that to have a decent steady income now is foreign to us. I’m gonna start acting like Eric’s Grandma, who, raised during the depression, now hides her money around the house in vases and pillow cushions, and won’t spend a dime on anything, ever, even though she’s kind of loaded. She takes the jelly packets home in her purse if you take her to IHOP. She will have everyone’s leftovers boxed up at a restaurant, even if your leftovers are just the lettuce and parsley garnish on your plate. At the country club where Eric’s parents were members, she’d go into the bathroom and use all of the lotions, Qtips, mouthwashes, and hairsprays that were on the counter as a courtesy, just because they were there and she wanted to get her fair share of free things. There’s even stories of stashing airplane bottles of liquor in her purse during international flights, even though she doesn’t drink. I love her. And I will turn into her. Being poor for so long can do that to you. (And I’m not at all  exaggerating when I say poor.)

Anyway, that’s (hopefully) behind us now, and we can actually pay all of our bills every month, which is great.

I’m working pretty hard to plan Adelaide’s Jungle Safari Fourth Birthday Party at the moment. So far, I’ve made invitations. And ordered party favors online. I have big plans for this one, but I know me and plans, so I was smart and decided to have the party at the park, so that when none of my big plans for activities and decorations actually happen, there’s a playground to fall back on.

I can’t believe my little baby is a four-year-old. I can’t believe I’m about to do it all over again. Lots of deep breaths are in order.

Baby Adelaide.

Oh, and in two weeks I turn 30. It never seemed strange or scary to me, 30. I’m actually kind of excited. I think it’s sort of cool and grown-uppy sounding. Will my parents stop telling me what to do come midnight August 28? Maybe. Probably not.

And to leave you with: Some pictures of my Peace. This is how I handle the stress of our life. This is what refreshes me. What makes it all OK. As much as I have to complain about living where I do, this is what I will never complain about. Having the beach right next to me for most of my life has made the ocean like an appendage. I need it and feel weird when my toes go too long without being in sand. The salt water makes me feel healthy, and the sun warms my insides. (Though, I own a beach tent for the first time in my whole life.) Summer is my religion, and the beach my sanctuary. This year I will put some beach in a glass jar, so that when I can’t get warm in February and the darkness makes me sad and I’m tired and sick, I’ll remember that it’s just around the corner…

Coasting along.

I haven’t updated in a while, so I thought I’d let you all know that I’ve worked things out. In rather unconventional ways. But worked them out nonetheless.

I’ll be having the home birth I need. As long, of course, there is no emergency situation to send me to the hospital. I am happy and calm and at peace now, and finally feel like I can focus on what comes after the birth: a baby. I finally went ahead and started a registry on amazon, which was somehow a symbol of my starting to nest. And nesting is somehow a symbol that I am feeling settled.

I have had no other problems since the sixth week of my pregnancy. I’m now 20 weeeks. I’m tired, but so is every pregnant woman. But pregnancy-tired is actually not as bad as porphyria-tired. I’m avoiding triggers, and had been continuing glucose infusions every other week. I think I’ll cut those out, though. The last infusion left me feeling nauseated and extremely fatigued. Pregnant bodies respond to glucose differently, and I think that pumping 500 grams of the stuff into my bloodstream all at once is a little much.

I had trouble putting on weight at first, but I think I’ve got about 6 or  7 lbs on me now, which is SLIGHTLY below average, but not unhealthy. It’s different than with Adelaide. With her, at 20 weeks, I think I’d already found 15 lbs or so. But all pregnancies are different, just like all babies and children are different.

Little Babo is tumbling around in there more and more. I love when I finally lie down at the end of a busy and exhausting day being mommy and wife, and I can focus on Babo. I’ll place a hand on my tummy and feel the kicks and pokes and gymnastics. It’s wonderful.

I’m feeling slightly stressed about how we will fit another person into this house. It will be fine for a little while, but two bedrooms and one bathroom is going to get small real quick. It’s already small. I could really do with another bathroom, quite frankly. Sharing one with a man and a 4 year old takes all the peace out of anything that can possibly happen in a bathroom. While Babo is a baby, s/he’ll sleep in our room (we are a co-sleeping family. No cribs allowed.) But once he’s older and I’m ready to reclaim my bed space, he’ll need a bed. In a room. That Adelaide will share for a while if he’s a she, but if he’s a he, I foresee the need for another bedroom sooner rather than later. Already we are making major adjustments to her room. Babo won’t sleep in it, but all his/her stuff will. I forgot how much stuff they take. It’s little stuff, but stuff.

So that’s where things are for now. Nothing exciting on the porph front (thank goodness!) and a healthy, normal pregnancy so far.

Adelaide's shot of my belly.

A Labor of Labor.

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….

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?”

What?!?

“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.”

WHAT!?!

“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.”

OHMYWHAT!?!?!?

“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!