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.




And she travels.

6 11 2009

I’ve had a pretty good couple of days. Just a week ago I was thinking that I’d never get to feeling better. But I learned some things from some other porphies that seemed to make a big difference. Yes, we call ourselves porphies. Or, at least, I call ourselves porphies and they all seem to go along with it, so…

Someone (a porphie,) found my blog and sent me to the Yahoo! Porphyria group. There’s seriously a Yahoo! group for anything and everything as it turns out. So I started posting about my experiences and asking these folks for advice, and I got a LOT of feedback. Turns out, I was “smoldering.” I wasn’t in an attack any longer, since I’d gotten to where I was sort of able to get on with life, but I hadn’t made it to “remission” either. I was still getting really nauseated and occasionally throwing up (OK, occasionally = 2 or 3 times a day,) and I was still having quite a bit of pain, especially at night. Oh, and I had this really awesome freak-out attack thing!

It was late in the night, and I’d had a full day. Some neighbors stopped by to chat and see how I was doing, and we ended up sitting up with them until midnight or so (crazy us!) I’d taken all my meds around 11, which was some morphine, a reglan, a cimetidine and a colace. By 12 I started feeling sorta wierd, so I told the neighbors to “stick a fork in me, ’cause I’m done!” (just like that,) and Eric and I headed off to bed. By the time I was in bed, I felt like my whole body was crawling out of itself. Huh? Yeah, I had kind of this creepy feeling all over, in my tummy and legs and back, a bit like when I used to get restless leg syndrome when I was pregnant, only this was worse and more horrible. I started shivering uncontrollably, and Eric got really freaked out. He kept trying to calm me down, but the more he felt the need to calm me, the more I knew he was freaking out, so I just got more anxious. We fed off each other in this way until I was in full-blown panic attack mode. I was rolling around on the bed, kind of crying and moaning, looking for a comfortable position,  while my insides itched, and I became increasingly convinced that I was going permanently insane. I’ve imagined being permanently insane before, and THIS was NOT how I pictured it. Not at all. I was NOT happy about this scenario one bit. I’d imagined permanent insanity to be an ignorant and lovely kind of thing, where I believed I was A-OK, and was truly fine with the world I’d created for myself to live in, and only everyone around me knew I was insane, but it wouldn’t matter because I was happy. But rolling around with crawling insides and  the body shakes is NOT a blissfully ignorant sort of insanity by any means, and in fact falls into the category of Movie Subject Matters I Avoid At All Costs. Eventually Eric rubbed my back until we both fell asleep, me with my arms wrapped around myself, laying belly-down, knees curled up under me with my butt in the air, baby-style, and he, propped up on one elbow, with his other hand on my back, his head bobbing around on his neck and drool running down his chin.

So that happened. And I kept feeling a little sicker everyday, and then I got the magic answer.

After posting my drug regimen on the Yahoo! board, people started flooding my inbox with freak-outs. Turns out, reglan is on the UNSAFE FOR PORPHYRIA Drug List (!) and I was taking it three times a day!!! Also, cimetidine is controversial, with some saying it completely controls their symptoms, but others saying it makes symptoms way worse. AND,  I was taking Miralax regularly to fix what the morphine breaks (my ability to have bowel movements, that is,) and THAT is also on the UNSAFE FOR PORPHYRIA Drug List.


(Miralax side story: It had been a couple days since a good, you know… So Eric told me I needed to take some Miralax in prune juice. I told him if I did, he had to as well. So he whipped up two cocktails, which we pretended were end-of-the-day apparetifs, and named them Purple Ass Shooters. He brought the drinks into bed for us to chug while we watched Arrested Development on Hulu, and we hemmed and hawed, biding our time before we actually drank the awful stuff, and then I dumped my whole. freaking. glass. Yep, all over the bed and Eric. To Eric’s great credit, he didn’t even get mad. He just got up, changed the sheets and himself, and made me another drink. And then we drank them.

Eric ran to the bathroom immediately upon waking up in the morning, and visited it two more times before even going to work. Lucky bastard.)

So I’ve now stopped the poisonous drugs, and low and behold, I’m feeling TONS better! I’m starting Day Number Three without nausea and hatred towards humanity! It’s so exciting! And I also get to chew my doctors out for not paying better attention to The List, which will be really satisfying.

And now, we leave this evening for Round Hill. We’re off to see Eric’s folks for his 30th birthday weekend. I’m a little concerned, because I’ve learned how many things are triggers for attacks, and I will encounter ALL of them on this trip. We have to take our own sheets, which have been laundered in Seventh Generation non-scented detergent, as the standard stuff is toxic for me. I’m taking my in-laws a gift basket full of all-natural non-scented house cleaners and dish soaps and stuff, since regular stuff is full of chemicals that can almost-kill me. (By the way, they’re not good for YOU, either, even if you DON’T have porphyria, and they’re certainly not good for our Mother Earth, so feel guilty and stop using them. They’re not going to clean or disinfect any better than a bottle of vinegar can, and you’re slowly poisoning yourself. And if you ever have a porphie guest in your home, you could instantly poison them, and don’t say you’ll never know a porphie, because you’re reading this, aren’t you, so you know me!)

If I have an attack while in Northern Virginia, I’ll have to go to a hospital where they don’t know anything about me or my disease, so it could be frustrating. I’ve started making my ER binder, which every good porphie has. It’s got all my drug info, basic info about the disease, treatment instructions, my docs’ contact info, instructions for not using perfumes or chemical cleaners around me, etc. etc. But the binder isn’t done yet, so I can’t get sick until it’s finished.

Then Wednesday I’m supposed to have my big important appointment at Johns Hopkins. Although, I’m getting skeptical as to whether or not this will be worth my while. We’ve asked the doctor to call me before the appointment, so I can be sure he actually knows how to treat porphyria, and I’m not going to be just a guinea pig for him, but he hasn’t called back yet. It’s MY money and my time, and I won’t be a happy camper if I get there and it’s another “Wow! You have porphyria! That’s amazing! I really don’t know anything about it because I’ve never seen it before, but this is FASCINATING!”

I’ll shove my fascinating foot right up his amazed ass, is what I’ll do.

So here’s to safe travels and continued “remission” and knowledgeable doctors and non-toxic hand soap this week! And don’t worry, I’m sure I’ll have plenty to write about, as my mother in law will be under the same roof as me for a week. Oh boy.