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.)