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.💋❌⭕️❌⭕️



People who need people.

7 04 2014

There’s something about a rainy Monday morning that turns me into a soppy, contemplative, ugly-crying, junk food-craving mess. Especially a rainy Monday morning following a hot mess of a weekend. (You know.)

We all acknowledge that I’m headed toward break-down, right? I’m in my Coming-To-Jesus moment. So close to the tipping point.

I have a very best friend who’s also having her Moment, and maybe it’s because of her and her pain and her need for real, true help, that I’m looking so hard at my own face in the mirror this morning. Her crisis is fairly monumental. Mine is not yet. But her wake-up call should be fair warning to me. I should accept this gift of someone else’s alarm and get out of bed before my own alarm starts screaming in my ears.

I had a panic attack yesterday. My first in years and years. It’s no real surprise. I’ve been in a retrograde as of late , revisiting aspects of my past life, both good and bad. My late teens and early twenties were such a tangled rat’s nest of coming into my own and losing parts of my soul. I was so full of promise, full of motivation, a bright shining star of drive and curiosity. People thought I was going places. People believed in me and took chances on me. I dutifully did my best to make them proud. I worked hard, lusted after learning and set myself up to gain as many new experiences and branch out into as many networks as I could.

Unfortunately, I was also in a whole lot of physical pain, a whole lot of the time (and didn’t know why of course,) and physical pain can easily fade into emotional and psychological pain, until they are one and the same. I started having panic attacks, and I figured out that drinking alcohol would temporarily stop a panic attack, so I did a bunch of drinking. I needed it. Couldn’t make it through without it. I went to some terrible psychiatrists, went on all sorts of pharmaceuticals that made me fat and zitty and emotionless and sleepless and numb, but nothing did the trick like beer. Lots and lots of beer. (Good, fancy beer of course. Then you can call it a hobby and say you like learning about how beers are brewed or some bullshit like that. I’ve now given up that facade and drink wine from a box. Because I’m poor.)

Between the immense pain I was almost always feeling, and staying either drunk or hungover, I spent my early twenties inching further and further away from all that promise of great things to come, and found myself falling into irrelevance and obscurity and without the network of support I worked so hard to create. Depression took over everything.

I’ve been close to putting the fire out over the years since, but I’m still dancing around, stomping out flares, never quite able to stop the smoldering. I’ve had some wonderful moments, and beautiful children, and a supportive partner, lovely sunshiny days with sand in my toes, big smiles on my face, happy moments with laughter and joy. But underneath it all has been that annoying depression pit blowing smoke in my face, no matter which side of it I stand on.

I’ve lost control (as I have over the years from time to time) and too many flames have popped up in too many places and I’m over my head. It’s either get some help dowsing the flames, or burn.

For whatever reason this happens to people, my way of coping has been to rebel or something? Have a mid-life (third-life?) crisis kind of thing? I’m so overwhelmed with scary thoughts and anger, that I’ve wanted to disconnect from Right Now. And be in another place and another time. Like my back-thens. When things were hopeful and fun and there was still a good enough amount of serotonin pumping from my brain. I’ve started eating meat again, digging out dusty old CDs, contemplating crop-tops for this summer. Putting myself back in my 21s. But I forgot about the ugly flip side: The panic attack, I’m floating off the face of the earth and can’t breath and will surely die or stay permanently out of my mind side of my 21s.

It sucks.

I tried to eat brunch with one of my most favorite trusted people yesterday. As we sat on our bar stools and decided which fancy DC version of snobby eggs and meat we wanted, the panic hit me. Boom. Out of nowhere. Just like that.

Hello, old friend. It’s been years! Where have you been? Mucking around the darkest recesses of my psyche? Oh? What’s it like down there? Why don’t you tell me all about it while I sit in this brunchy place-to-be-seen and pretend to be interested in turkey hash and lox on a salad! How about we hold hands, spin around and get dizzy together! What’s that? You want me to hold my breath and see how long I last before passing out? Ok! Uh-oh! There you went and took my perception of reality again, you tricky panic you! I better find a way to make it into the bathroom and stare in the mirror for a few minutes to remind myself of who I am and what I’m really doing right now! But then, how will I ever manage to walk all the way back to my seat ALL BY MYSELF? Maybe all these people in the restaurant know you’re here. Maybe they can see you. Yep. Definitely they can see you. And hear you. You’re not staying invisible enough! We should leave. It’ll be better if we’re alone. Except then you might kill me! Ugh. What do I do? The thought of us staying here together seems impossible! But the thought of us being somewhere else together seems awful too! You’re so high-maintenance, panic. I hate you.

I had to make my friend leave brunch early because I really, honestly thought I might just fall right off the bar stool and make a fool of myself.

I also was having a really, really hard time not losing my fucking mind and screaming and crying and begging to be taken to a hospital and knocked out so I could just wake up on the other side of it, in a psych ward, with gallons of Xanax. Can you imagine!?! The lady with perfectly smoothed hair and pretty coral lipstick, in her boyfriend jeans and booties and latest thrift score of a gorgeous Banana Republic silk trench, just dropping then and there, grabbing the server by his shirt and screaming “Take me to a hospital! I’m going insane! The monsters are eating me!!!!” foaming at the mouth, black mascara making blobby raccoon circles around wide, crazy eyes… I almost wish it had gone down Iike that. It seems so dramatic and interesting.But no, when panicking, I must always maintain the picture of calm and happy on the outside, and somehow I do it well. (The picture below is actually me at that brunch. While I spun out of control. Can’t you tell? The other picture is the night before. If only I knew what was coming.)

Eventually the panic caused some nausea, I did some throwing up, saw some blood of course, and the physical pain took over and drowned out the panic.

So that’s one way to cope.

What are we all going to do with me?

So yeah. Before this shit gets out of control again… I gotta find something to grip onto and pull myself together. I have importance, and my brain knows to tell myself that, but my heart is having a hard time believing it. It seems easier on me and everyone else to just fall apart and be done with it, because I forget that I matter to people. People, like my kids. My husband. My parents. My friends. There are actually people and things in this world who need me, like my dear friend who’s in the midst of her own falling apart and deserves my shoulder to lean on. Plus, I have some plans for what’s to come next, and they’re fairly important plans.

So could someone get on over here with a fire hose? Sheesh. I’m exhausted.



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 ;)}

Laundry on the Line.

9 09 2010

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 for nice natural parenting and pregnancy articles, and occasionally I check out 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.


16 08 2010

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.

26 07 2010

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.

What Would a Porphyric Do?

9 04 2010

(I’m trying out a new look here. I felt the other was getting a bit stale. I may change it again, until I’m fully satisfied. I wish I knew more about how to make it look exactly how I want, but for now I’m stuck with the freebie themes that wordpress provides. Unless somebody brilliant wants to help me out in exchange for some gluten-free brownies.)

I’ve been getting a lot of messages and emails lately from people who are new to the world of porph, or who are waiting for a diagnosis. It’s driving me nuts. Not that I’m getting contacted,  (AT ALL! Keep ’em coming!) but that so many people have one of the same two stories: 1. They’ve been diagnosed, and now are facing a world of doctors with no information for them, or B. They’ve done their research, their symptoms match up, and they’re desperately seeking a medical professional to believe them and test them PROPERLY, so that they can get a diagnosis.

I have to say, I’m pretty darn lucky that my story went the way it did. I only spent 4 agonizing hospitalized days before I was handed a diagnosis (if you don’t count the 15 years of mystery symptoms and ER visits.) Many people suffer through days, weeks, months, even years, in that kind of crisis, in and out of hospitals, with incorrect diagnoses, before a doctor will land on porphyria. I don’t understand it completely. It’s a disease. With a list of symptoms. And tests that can be done. Yes, it’s rare, yes the test is a little tricky, but it absolutely exists, so why are doctors so hesitant to “go there”?

I wish I could give out the right answers to everyone who writes to me asking if I know what they should do next, but I’m just figuring this shit out myself. I have no idea what I should do next! I get most of my advice from the yahoo group of porphies, and from the APF. But the thing with internetting it is that I have to censor the information as I see fit. Pick and choose. When it comes to medical information, so much floats around and not all of it is good. And I’m the first to admit that I’m REAL gullible when it comes to anything medical. I’ve learned to stay away for the most part, but I’ve been known to spend hours on webmd, and at the end of a session, I’ll have diagnosed myself with 24 different ailments, and when Eric comes in from work, I’ll explain to him slowly that we only have a matter of weeks left to be together, because my watery eye is a sign of West Nile Virus, and my  bad breath points to pleurisy, which is almost certainly a sign of heart failure, which was probably brought on by cardiomyopathy, a result of drug abuse and WHY DID I HAVE TO TAKE SO MUCH ADVIL FOR PMS WHEN I WAS IN COLLEGE??? WHAT WAS I THINKING!!!???

So yeah. No more wembd for me. At least the yahoo group is full of real, actual porphies who have lots of experience being porphyric. And that’s worth loads in a world full of doctors who don’t bother researching the disease because so few people actually have it, and they can’t make money off THAT, now can they?

The APF has named April 17 – April 24, 2010, National Porphyria Awareness Week. I’m not usually psyched about so-called awareness campaigns for diseases, because the way I see it, we’re all afflicted with something, and we should all be aware of each other all the time as humans. Being well and getting good, solid, healthful care should be a given. I shouldn’t have to run- or walk- or jumprope- or bowl- or rock (in a chair)– for-a-cure. I shouldn’t have to don a rainbow’s worth of colors of rubber bracelets to let the world know that there are people who have diabetes or cervical cancer or ingrown toenails, or to remind us to all stay fit and feel our boobs and get prostate exams and notice irregular moles. We shouldn’t have to “fight” for our “cause” to “win” the “race” for money, just so we can all be healed and well. Please don’t think I’m an asshole. I’m not. (Insert “that depends on who you talk to” joke here.) I get it. People get diagnosed with a disease and they are overwhelmed with emotion and underwhelmed with information and they are scared. Or they’re told that their child has something terrible and probably won’t live, and they become obsessed to the core of their being to change that prognosis. God knows I would! I just think we shouldn’t be forced to waste our precious, valuable, life-giving energy on raising funds to save our lives, or our children’s lives, or our sisters and brothers and neighbors and best friends and grandmothers lives. Why can’t medical research be something that our community views as a necessity and happens for each individual citizen (and when I say citizen, I of course mean of the world.) Furthermore, why can’t we live in a non-toxic world? One where we’re not all poisoned by emissions, saturated fat, lawn fertilizers, plastics, autolyzed yeast extract, extra biggie super gulp Mountain Dew, clorox, marlboros, rGBH. Why can’t our children be fed nutritious, pure, fresh food when they go to school? Why aren’t we all so acutely familiar with, and aware of, our bodies that we don’t feel we have to rely on a dude with a white coat to tell us if something’s amiss?  Why can’t we embrace physical activity from the get-go and ride our bikes to the market, or live within walking distance of, I don’t know, anything? Why can’t real, true healthfulness be a given, a part of our Normal, and not just the sort of chatter we expect from extremist crunchies in birkenstocks?

Alas, it’s not my world we live in. Our “health” system does ABSOLUTELY, INDISPUTABLY revolve around $. And I must concede that if there’s hope for every single porphie to get a prompt and correct diagnoses, and receive thorough, valuable and proper care, then we’ll just have to appeal to the ones with the dollars. Turn porphyria profitable, right? And the way to do that is to make sure as many people as possible know about it.

So in honor of National Porphyria Awareness Week, I’m going to post every day during that week, and scheme up some goodies. I want to do a something or two during the week to “raise awareness,” but more so, I’d like to take the week to brainstorm, along with all you readers, about how to carry out an ongoing campaign that extends beyond the boundaries of a week and a foundation. (Not that I don’t appreciate the foundation and it’s existence.) Something meaningful that can take a tiny little step toward helping us all think of this disease as an ailing branch of the diseased tree of life… How should we better nourish the soil, and make the roots stronger?

I’m going to give a glimpse of the Daily Life of Sabrina during that week. You’ll get to read all the minutiae that normally doesn’t get posted, as my blog has thus far been reserved for my Big Moments. But I’d like to share all the little dirty details, and how I’m managing (or not) to cope with them. For instance, right now, the awful nerve pain in my neck and left hip is kicking in from sitting at this computer for too long, and I’m also super exhausted and need glucose. So I’m going to pop some vitamins with a glass of glucose water and try to stretch my legs before I plop on the sofa and let the wave of fatigue pass (hopefully.)