Rays of light…

25 06 2015

A few days ago, Esther Pearl took my hand and walked me out to the big rock in the middle of the yard. “Let’s watch the sunset, mama! The sky is PINK!” It gave me those deep-down shivers, the kind that only happen a few times in a life. We sat and watched the sky morph from orange to pink and red and violet, while we played “camping” and she set up our pretend campsite. She noticed the fireflies coming out to play, so she ran and caught a few to say hello. It was a simple, clear, perfect stretch of time, as she invited me into her world and I chose to really join her there. We breathed deeply together and made pretend smores, we snuggled and watched the Earth around us settle into night and made up our sleeping bags on the rocks-turned-tents. I settled into her Space, where the only things happening were Us, colors in the sky, blinking lights in the trees, and the best, most perfect campsite ever. 

This morning, when I woke for the fourth bathroom trip of the night, I saw the sky coming into orange at the horizon. I took a chance: I rubbed Esther Pearl’s back and said “Would you like to come sit at the bathroom window with me and watch the sunrise?” 

She nodded yes and held out her hands. 

After a few minutes watching from the window, we decided to go sit on the front porch for a better view. I sat down on the front step, my four year old baby in my lap, the two of us tightly entwined for the tiny extra bit of warmth we needed against the lingering chilly night air. She’d sleepily look now and then at the horizon, “Look mama! The sky is PINK!” and giggle at the cat stalking invisible prey, take note of all the roosters calling to each other from every direction, yawn and rub her little hand on my back. We sat like this  for 10 minutes or so, while the sky between the tree line grew brighter: orange, pink, fire-red, yellow. Colors that happen no where else in the universe besides the precious moments before Mother Earth rotates to that exact point and Father Sun joins us for the day. 

After a particularly big yawn, Esther Pearl decided she wanted to return to bed and a couple more hours of sleep. It wasn’t until then that I thought to check the sunrise time on my phone, to find we were still 15 minutes away from the official sun-over-horizon moment. It didn’t matter though. She was happy we watched the colors, and she whispered to me that she’d do it again this summer at the RIGHT time. 

So I promised the next time would be at the beach, to watch the magical fire show over the ocean. And again, I teared up, and felt those deep-down chills as she nestled into my armpit to fall back asleep. 

Twice in three days, for a rare pure-bliss-and-peace moment? I’ll take it. Just when I was feeling so depleted, running on empty — My cup is overflowing now, and I know I will make it for another stretch. 

*As much as I wish I had a picture to share, I’m not sorry I left my phone behind for these moments. Hopefully you have a beautiful picture in your mind’s-eye of what we were seeing. If not: I suggest that now is as good a time as any to get outside and see for yourself. Next clear evening, pause your life and take in the sunset. And then set your alarm to wake up the next morning to watch the sunrise! You won’t regret it.





A Thanks-giving Promise

6 04 2015

Thanks to Lindsay Coursen, Laura Thompson, Elizabeth Parker and Jenny Huisenga’s collective decision and effort to fund-raise for us, we have LESS THAN $700 to go!!!!! 

WOW! 

Can I just say that our family is right bowled-over with everyone’s love and support and encouragement and kindness and empathy and compassion? You better believe that we are chomping at the bit to get the very most we can out of this opportunity and come home to a new life of implementing some remarkable changes to improve upon our overall health and happiness, as well as improve upon, more specifically, my unique health and pain management issues. And along with that, comes the very special privilege to seek out opportunities to PAY IT FOWARD. 

We take to heart that our journey through this lifetime is endowing us with the very important and solemn responsibility of teaching our children the truth of giving and receiving. Of graciously accepting and joyfully offering. Of humbly seeking help, and unconditionally and unabashedly acting upon a recognition of another’s plea for help. And you, who have shared our needs with others, who have given what you can, you have intersected with our life-path, and you have done good! (And well. This is one of those rare times when that phrase is intentional and grammatically correct;  when “good” is good😉.)

Though the financial portion of the chain of events required to make this trip happen has almost become a good strong link, another (unexpected) link has weakened, as many of you may know. Admittedly, I have felt panicky over this latest challenge: what started out with “this is probably just a 24 hour bug that hit me hard and the attack will subside as soon as the bug clears up” has turned into a much more serious and potentially dangerous situation RIFE with complicated…complications. Today I must make the difficult decision to do what I am worst at doing. 

I must choose to relinquish control. 

I pledge to do so to the best of my ability, while continuing to advocate for myself and responsibly act upon the doctors’ and nurses’ suggestions and “orders” (insofar as they do not conflict with my intuition or general knowledge of what is safe for porphyria) and I will accept that I can not change the outcome of whatever has been set into motion. 

Because maybe, MAYBE, I’m not supposed to! 

I can’t possibly predict which way this whole thing is gonna go, so there is nothing responsible or wise or safe about exerting stress-energy and control-energy over the infection lurking in my body. It brings me so much sorrow and disappointment to even ACKNOWLEDGE the possibility that come 5:30 am Friday morning I am not physically well or strong enough to get on an airplane and fly west. But if that IS what comes to be, there must be a very important reason for it. I will be open to learning, I will be receptive to the lesson. I vow to not let my selfish rage over my perceived unfairness of it all blind me to the likely simple, yet HUGE, and BEAUTIFUL, thing that I’m supposed to gain from that possible outcome.

Or, perhaps, tomorrow: 

My fever will break. The staph will exit my system entirely. I’ll get another PICC-line (the current is considered contaminated of course) to last me the month until they clear me for a new port. I’ll go home the following day (Tuesday) armed with my new IV meds regimen to REALLY, REALLY be thorough about clearing out every last residual bit of infection. I’ll spend Wednesday scrambling, panicking, giggling, taking care of last minute details. And with help from several – as in ALL – of the alarms, at 5:30 on the beautiful morning of Friday April 10, Eric and I will board our wide-eyed kids onto a big, real-life airplane, and we will try not to let anyone (especially each other!) see that we’re getting misty-eyed over seeing our beautiful girls so unabashedly and authentically and genuinely full of wonder, discovery, joy. 

Maybe. Juuuuussssstttt maybe. 

  





Oklahoma is the place to be!

18 03 2015



Theres an event next month. In Oklahoma. For folks with porphyria and their families. I’ve wanted to go, but I’ve been afraid to try to go, because everything’s been a failure as late and I can’t take failure anymore. 

But my friends want me to go. I want to go because my kids will meet other kids affected by porphyria in their life somewhere. Because my husband will meet other husbands of porphies. Because my family will get a break from the struggle and grind of everyday life with a sick mom. Because my kids have been begging to ride on an airplane.

My friends want me to go so I can network with other porphies, learn about the latest and greatest in porphyria land, and meet with the expert who will be there for a Q&A. 

So they set up a fundraiser for me, and at just two days in, I’ve almost got half of what I need. I’m starting to let myself think the trip will happen. STARTING TO. If I don’t get enough, I’ll at least pay a medical bill with what was raised. Which is something of significance. 

Here’s the grit on the event in Oklahoma. 

And here’s the link to the fundraiser. 

If my lovely followers would pass this link around the world and back, I’d be ever so grateful. My friends love me so much, and they remind me to take care of myself first. I have a hard time with that, as most of us with spouses or children or jobs or commitments do, but it is NOT AN OPTION, ok? Remember that. It is an ABSOLUTE. The simple fact is: if I stop taking care of myself to take care of my kids first, I will get sick and not be able to take care of my kids at all. If you don’t take care of yourself, you will crumble. You know that. SO DO IT. Like I’m doing it. By asking the world to give me a couple of dollars, per person, to help me get to the place where I may meet people who can help me find a healthier, happier quality of life. 

It’s certainly not easy, asking for help. In fact, for many of us, it feels damn-near un-doable. You’d rather crawl into a hole in the ground than ask your friends for help. (Especially monetary! Shudder.) But trust me: once you get past the initial horror of the ASKING part, I bet you’ll be shocked at how easily people oblige. People are inherently good (or I choose to believe they are, anyway,) and want to help whenever they can’t. They just don’t know how or when, unless you tell them. How often, when you’ve updated your Facebook status to let everyone know you’re back in bed or in the hospital or having the toughest day ever, have your friends said “what can I do to help?” Probably fairly often. 

Guess what. They are sincere, the lot of them. Instead of saying “oh just keep me in your thoughts!” or “thanks but I’m hanging in there!”… how about saying “well, a meal would be great. I’m too tired to cook. Would this weekend work?” Or what if you said “I’ve been in bed for three days and the kids have nothing to wear! Do you think you’d be able to come over this afternoon and maybe throw in a load of laundry?” 

Sounds uncomfortable, doesn’t it. 

But it doesn’t have to be. Your friends will be happy to help, most likely, just as you’d be happy to help them. 

And the upside to this is that you have one less worry, a bit more rest, and some energy to put into something that counts. Like your kids, your spouse, your job. And there’s certainly no shame in that. 



Sending you all love and light! 





Release.

17 02 2015

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

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Oh…. Yeah.

13 06 2014

There’s this thing I forgot all about. You know when you forget stuff that you think should be important enough to remember? Like the year you got married, or a fifty dollar bill in a coat pocket, or how much you used to love studying British literature because of that one professor who made it come alive…
This thing I forgot, it got lost. In porphyria. In motherhood. In budgeting. In laundry. In potty training and breastfeeding and doctors appointments and pain and stress and fatigue, in wine and Cymbalta, in isolation and play dates.
But, y’all: I remembered it last night.
What I remembered is: that music is at my cellular level. It is my stardust. I am made of it, and it of me. It tingles through my tissue like blood pulses through my veins. It is home to me. It is The Thing. Of my life. My Thing. And for years I was intimidated away from letting it happen, and had excuses of no time, not the right people, not the right equipment, no money, a disease, kids… All this shit that in my mind meant that I’d missed my boat and that was that. I lived ten years thinking I failed my potential. It never occurred to me (and WHY DID IT NEVER OCCUR TO ME) that I did NOT miss my chance. I’m not too old. Too tired. Too busy.
I remembered last night that making music wakes up little tiny places in me that have been dead for the longest of time. Like, I sat on my foot for ten years and it went numb, and last night it finally dawned on me to just stop sitting on my foot, and the feeling came back. And it was uncomfortable and tingly and tickly for a few minutes and I couldn’t put weight on it, but when the blood filled up the space again, I was all like “oh yeah! I have another foot! I can walk!”
It was like that. I found my other body part that had gone so numb it disappeared from my psyche. And can I just say, ahhhhhhhhhh.

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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.

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Next?!?

28 03 2014

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

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

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

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

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

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

We were discussing menopause.

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

Just like that.

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

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

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

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

Maybe I should do it and shut up .

Maybe I can’t.

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

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

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

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

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

Which way will I go?

It’s time to make some choices.

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