Hello, dusty old blog.

I’m sorry I’ve neglected you for so long. It’s not you! It’s ME. I swear. Really. It’s all me. You did nothing wrong. I had a momentary lapse in judgement and just… left one day. Went out for milk and never came back. It’s what I do when things get too touchy-feely, too emotional, too serious. But I’m back now, so what do you say we give this another shot? I’ve… changed! Yeah. I’ve changed. 

So the BIG TRUTH of why I stopped sharing my innermost thoughts with the internet, and why right now is the time I’m choosing to open back up…. Is coming up! Keep reading friends! 😉 

I started this blog a billion years ago (2009!) right after I was diagnosed with Acute Intermittent Porphyria (AIP, or also now being called Hepatic Porphyria or HP. I’ll explain the re-name in a later post.) The idea, of course, was that I had just gone through this GIANT, life-changing, dramatic and traumatic event, and my way of dealing with it was to share. Overshare, actually. And try to make jokes. Historically, when I’d meet an uncomfortable situation, I’d greet it with sarcasm, wit, snide humor. It’s part of that whole nagging need to manage all the emotions in the room: Don’t let anyone, self included, feel negatively! Make them all laugh! 

Call me Chandler Bing. or Nick from New Girl. or Liz Lemon. I’m painfully self-aware, folks, that it’s an overdone trope, and likely an annoying character for others to have to endure… 

Yet here I am. I can’t NOT be this way. 

Do I ever feel anger and sadness and discomfort and fear? OF FREAKING COURSE I DO. 

Do I ever want to acknowledge those emotions publicly? NOPE. 

So what does a gal do instead of cry? MAKE JOKES.

Humor is my coping mechanism. And I think that’s valid and acceptable, and it helps many people get through otherwise grim moments. But the problem is…

It’s temporary, and doesn’t fix anything, and eventually, stops working. 

Friends, I found the funny/absurd/ridiculous/silly in porphyria…. until I couldn’t.

I tried and tried and tried to “keep smiling” and “stay positive” and “live laugh love” 🤮 but, y’all. Holy shit. It stops being possible after some certain amount of time. The hospitalizations become monotonous and grueling and lonely. The medications take their toll on a body and mind. The constant schedule of medical appointments feels meaningless and tedious. Having to work so hard for such a low baseline in terms of quality of life becomes heavy and burdensome, and writing about it felt trite.

I stopped feeling funny, and I stopped even being able to fake it. Depression and anxiety stuck their fingers in me and I lost the energy to pry them away again. I pulled back from people and life and relationships, and sort of folded into myself. I slowly backed off from most online interaction, and became a lurker. I lived in a dark space, gazing at other people’s social media posts through the slits of my closed blinds, convinced that everyone else was really NAILING it, while I was just… not. 

Eventually I found enough gumption to shift my energy towards pursuing a more permanent solution to all the bullshit that comes with living with AIP. I decided that the way my life was happening to me (and I mean that very literally, as I was in no way, shape or form, an active participant in my own life anymore,) was not acceptable, and the risks of a liver transplant no longer outweighed the benefits. I’ll certainly get deeper into the meat of what that looks like, but a non-exhaustive list would include things like: 

• 10 port replacements in 10 years, one of which required an emergency surgery with no anesthetic and very little localized numbing
• multiple septic infections, resulting in painful surgery to clean out my bones 
• heart stopping and restarting  
• code blue-ing 
• constant battles with pain meds and navigating the ever-changing political and social climate surrounding pain medication 
• avoiding psychological addiction while managing physical addiction to said pain meds
• being on a dilaudid IV pump that I wore like a fanny pack for a whole year 
• mental health crises fed and fueled by extreme sleep deprivation 
• PTSD from ALL OF IT  

So.. yeah. I had my doctor book an appointment with the transplant team at Duke. Wouldn’t you?

Lo and behold, right around the same time, I learned of a clinical trial happening for a new drug that was being used to treat hepatic porphyrias. I started hearing chatter amongst the online porphie community that folks in Europe who’d had early access to the clinical trials were having great success with this once-a-month injection drastically reducing the number of attacks and the severity of their acute symptoms. So, on a whim, I had my doctor also try to get me into the trial. I decided that whichever option worked itself out first, the transplant or the clinical trial, would be the correct path presenting itself, thereby relieving myself of the pressure of deciding which option was the right option. 

One of those two paths did end up opening up to me, and coming to fruition. That was just over five years ago. I am now half-a-decade deep into this particular leg of the journey. Which one was it, you ask? If you know me, you know. If you don’t, you’ll find out in subsequent posts! That’s not exactly the point of this post – we’ll get there soon though!

It has been seven years since I last shared anything on this blog and, as I mentioned before, almost as long since I largely stopped sharing on any other form of social media. Not only was I not feeling funny anymore and needing to focus on finding some long-term solutions to this disease, but I became more and more convinced that it was grossly self-aggrandizing to tell everyone all of my stories, all of the time. I began to loathe social media in general, and the influencer culture, and all of what I perceived as narcissistic souls who felt important enough to be entitled to command the attention of anyone they could. Of course, that loathing was rooted in insecurity, as I simultaneously coveted the shameless abandon of those who can bare their all with no fucks given. (This is an entire topic I plan to explore later in more depth; I am certainly not the first nor the only to feel this way, and plenty has been said about it already by much smarter and more articulate people than this little porphie, but I do see it as a relevant and necessary conversation to have, in the context of using an online platform to connect and heal.)

So why now? Why come back to this space after all this time, with all my very complicated feelings surrounding “creating content” still very much in play? (And yeah, blogs are officially considered “content”. I asked my 15-year-old, an internet professional.)

Unfortunately I don’t have any great reason for it, other than, it just feels RIGHT right now. 

I’m really sorry to be so anticlimactic, but that’s the truth of it. I am still struggling with both physical and mental health. I am still in a constant battle with My Swell Disease and with all the shit that comes along with living life with an invisible but serious chronic illness. Everything about my life is dictated by this one thing, this stupid fucking porphyria of mine, and I am at constant odds with this. My living situations, my career (or lack thereof), my child-rearing, my marriage, my relationships with my friends and family, my financial stability… (I like to say that if you’re lucky enough to win the porphyria lottery, you win _{the opportunity to pay} millions of dollars! Or: Have porphyria? The only thing that will suffer more than your liver is your bank account! Ba-dump-CHING! See? Jokes.🙄) 

I know, I know, I KNOW. If I can be at peace and live in harmony with this disease and see the challenges it presents as ***gifts*** then it will be easier, right? Right. 

But YOU get a monthly fucking bill for $190,000 for one dose of life-saving medication that you’ll need every 4 weeks for the rest of your life and see how well you sleep at night. (Spoiler alert: Not very well probably.) 

I guess it’s true, though, that I had a series of little mini-epiphanies and events over the last few months that led me to this moment of type-type-typing away. One of which was reading through my old posts, and reading comments on the posts, and reading old DMs and emails from people who found me through this blog. I remembered that my writing was a therapy in and of itself (an idea that my brain wants to automatically declare selfish, but my CBT has taught me to reframe as “it’s ok to be self-serving sometimes!”)

But I also was reminded of how many people seemed to find some sort of relief when they stumbled upon my blog. Most people who have recently been diagnosed with or are suspecting a diagnosis of porphyria (for themselves or a loved one,) probably haven’t read much about it other than absolute horror stories. Even the private online support groups can feel daunting, when all you’re reading is one nightmare after another. For many years the disease was written up very poorly in medical literature and didn’t match the lived experiences of actual patients. So it wasn’t uncommon for someone (ahem, ME,) to receive a diagnosis without any good source of information or support. (Reading through some of the very first posts on this blog illustrate this point well.) Terrifying doesn’t begin to describe that feeling.

Let me just acknowledge for a moment how dark and bleak and empty that house is, when you don’t think anyone else is living in it. 

So finding this blog, with a real, living, breathing, messy human behind it, navigating the world of porphyria and admitting how gross and awful and downright unpleasant it is, but at the same time raising babies and trying to make as vibrant a home and life as possible, was for at least a handful of people, a huge deal. It is ALMOST IMPOSSIBLE for me to believe this, this idea that other people were looking to ME for strength, support, comfort, camaraderie, a giggle even… but if I step outside for a second and look back in, I get it. 

One of the other little things I’ll share for now, that partly led to me actually hitting publish on this post (did you think this was the first and only draft I started over the years? Lollololollolol!): I was recently given the gift of being able to re-experience one of the happiest times of my life, even if it was just for a few hours. I surely will dive more deeply into this story later, but to re-cap it “quickly” (wink!): 

The band Everything at the Hamilton Live in DC

My most favorite band of all time, a band called Everything, got back together recently to play a big show in DC; they hadn’t played as a full band in well over a decade. I can not tell you how many of their shows I saw during my high school and college years (I even landed an internship with their manager during college, which was nothing less than a dream come true for the ambitious, driven, music-obsessed 19 year old I was at the time!) Getting to see them play again was the most invigorating experience I’ve had in a few years; and humbling, as I was reminded that dancing all night in shoes that are definitely not orthopedic is something that a 40+ year old can not expect to do without a very serious and strict recovery plan in place!

After a week of basking in the glow of such an amazing night, I was psyched to go see them play the very next weekend at a smaller but really unique venue. Unfortunately, the night before that second show, the band had to pull out as several of them had tested positive for the ol’ Covid. But the lead singer, Craig Honeycutt, decided he’d still go and do an acoustic set. 

Craig Honeycutt of Everything

My husband didn’t even have to ask me if I still wanted to make the trip for the modified show. We just knew we’d go no matter what. I’m not in the hospital (as I had been several years before when I planned to go see some of them play because that is The Story of My Life after all,) I’m healthy enough to handle two adventures in two weekends for the first time in years, so WE’RE GOING. And I was so glad we did. It was an outdoor-ish venue, and it was rainy and very cold for May. But the music, the scenery, the vibe, the heaters, the people, all came together to create something absolutely special. And even though it was an acoustic set rather than the entire band? Didn’t matter. Just as the previous weekend with the entire full band in a bumping, pulsing, multi-chrome-lit downtown club, this quieter, chillier, more rustic setting was just as transportive. I don’t know what to say… It’s nothing short of magic for me. A damn genie pops out of a damn bottle and says “what do you want?” and I say “to be 21 and carefree and happy and light and easy again” and the genie is like “ok here’s this music, swallow it and close your eyes.” and I’m instantly transported and I’m pretty sure I leave my physical body. 

In other words, it was great, and I forgot all the things that I have to worry about, just for a few hours of time, which was so very much what I needed. (Hang in there… I’m getting to how this ties into my return to blogging, I promise!) 

After his set, I walked over to let Craig know I was so grateful he decided to still come perform solo without the entire band and I started to try to explain that it’s more than just the music, it’s the experience, and the invaluable reminder of that feeling of hope and joy that I get when I listen to this particular music, and the benefits of revisiting all of that sensory input that flashes me right back to my late teens/early twenties… and, y’all. I started feeling myself getting… (gasp!) emotional. And I couldn’t find the joke to make to diffuse my feels! And, before I knew it, I was… tearing up (HORROR!!!) and I admitted, out loud, to this man who I’ve been acquainted with for 20 years and respect in a very professional way, that the two nights of music he created were so important to me because: 

there are so many reasons I shouldn’t have fucking made it this long. 

And it’s the truth, readers. It’s the truth. Over the last couple decades, there have been more things going against me than for. But, against those odds, here I am. Still kind-of-standing. And it took those two nights of music. MUSIC! To make me admit that shit out loud for one of the first times ever. And… not to, I don’t know, my therapist. But to the singer of a band I used to work for. _{(Sorry Craig for making it weird!)} 

So I spent the next days reflecting on that, looking for the reason behind that moment of coming to terms with this idea that maybe I shouldn’t be alive still, but I am, and dammit I better do something with that! How dare I NOT feel that same sense of hope and anticipation I did 20 years ago, when I have laughed in the face of dying more than once, deciding over and over again to keep living, and was able to savor (to borrow from Craig’s own words here,) the MIRACLE, the absolute miracle of being here, to stand in a room 13 years after a crushing diagnosis, and hear my favorite band play again.

Like I said, I’m still faltering and navigating and trying and falling and getting up and tripping and nearly dying and starting over and breathing through it all. By no means have I conquered anything. But I’ve learned some things in these 7 years of absence. (Mostly that I have so much more to learn.) So maybe it’s good to share some of this, in a place where folks are welcome to take it 

or leave it

     or not pay attention 

or eagerly consume it 

or whatever.

I also remembered that communicating is the only way to learn, and this is a space where I feel like there is a genuinely symbiotic relationship between “creator” and “consumer”. I learned things from my readers, my readers learned things from me, I learned things about myself just from writing, and my readers helped lift me up and provided some scaffolding while I was struggling to build upon what I was learning from the ***gift*** of porphyria. 

So let’s do this YET AGAIN, shall we? Give it another go? We’re all a decade wiser now, yes?

I have a running list of topics to explore in the future, some good, hardy stories to tell, and I also have some (blech) “content creation” ideas beyond this blog. 

like… 

dare… 

dare I say it….  

a podcast. 

Aaaccck I’M SO SORRY.

If you cringed, don’t worry, I did too. But shit, I entered my forties AND I went almost 2 and a half years of a pandemic without starting one, and I got my letter saying that if I don’t start my podcast soon I’ll be charged a hefty fine by the genx/elder millennial cuspers association, and we don’t want that. (Please refer back to the size of my monthly treatment bill.)

Rays of light…

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

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!



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.

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.💋❌⭕️❌⭕️

Oh…. Yeah.

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.

People who need people.

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.

Next?!?

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.

Shrinking… shrinking…shrunk.

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

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

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

Except for one thing.

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

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

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

The pieces went into the recycling bin.

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

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

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

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

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

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

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

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

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

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

If I was well:

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

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

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

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

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

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

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

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

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

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

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

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

For REAL y’all?

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

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

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

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

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

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

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

New AIP treatment in the works?!?

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

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

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

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

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

Click to access Desnick-AS1-PorphyriaCongress-May2013.pdf

Alnylams presentation:

Click to access ALNY-Porphyria-AS1-Pres-May17-2013.pdf

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

http://www.alnylam.com

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