17 02 2015

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



People who need people.

7 04 2014

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

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

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

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

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

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

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

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

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

It sucks.

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

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

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

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

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

So that’s one way to cope.

What are we all going to do with me?

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

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




28 03 2014

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

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

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

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

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

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

We were discussing menopause.

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

Just like that.

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

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

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

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

Maybe I should do it and shut up .

Maybe I can’t.

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

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

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

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

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

Which way will I go?

It’s time to make some choices.


Shrinking… shrinking…shrunk.

12 08 2013

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.

And the big news is…

26 11 2009

Thanks to being diagnosed with a disease, I was left with a big decision to make. And there was a deadline on this decision. I ignored the decision-making process at times, but often, I agonized and wallowed and over-thought the whole thing. But then, last week, the deadline was approaching faster than I could deal with, and I was forced to make up my mind once and for all. Except that I had a few days with 24 hours each, and each of those hours filled with 60 minutes, all made of 60 seconds, which gave me approximately  432,000 opportunities to change my mind.

Alas, Tuesday I decided to lock in my answer.

I had to let my boss know whether or not I’d be returning to work. After becoming sick, my executive director generously offered to pay me half, and let me have until Dec. 1 to stay home and figure out if I could come back. Not bad, considering I work for a non-profit, struggling its due economic downtime struggle.

My job is part-time; nonetheless, pretty intense. Sure, being a surgeon or an air traffic controller probably beats my job in the intensity department, but still, My job entails dealing with 120 children, and their paying families, and 3 very artistic and strong and independent directors, and the staff of every venue we visit, and more record-keeping and phone-calling and attention-paying to every frip-frappin detail than you can imagine. Usually, if there’s a problem, ANY problem, it comes to me. Most often so I can take the blame and fix it, or at least so I can fix it for whomever IS actually to blame. If there’s a question from anyone, to anyone, I’m supposed to know how to answer it. There are parts of the job I love, and parts I really hate. But that’s any job, from what I hear.

So, in making the decision of whether or not to return, I had to weigh the following:

1. We’re dirt broke. And about to get dirtier, since Eric’s store closes next month, and he so far has not found a new job.

2. I’m still pretty sick, and on drugs.

3. We’re dirt broke.

4. Stress is a trigger for porphyria, and my job has enough stress for several people to share, but

3. being dirt broke is also very stressful.

4. The building where our offices and rehearsal spaces are located is toxic to me. In a bad, bad way. Full of mold, and full of horrible harsh cleansers that are used several times a day on every imaginable surface, and full of those evil little air fresheners that see you coming and spit foul-smelling poison on you as you walk by. My organization rents the space and has no control over what cleaning agents are or are not used. I literally came home feeling sick every night after being there last year.

5. I work around children, who are known for their ability to walk through their daily activities carrying life-threatening viral and/or bacterial infections inside their nostrils, and distributing them to any lucky soul who happens to come within a few yards of them. And, of course, illness is a porph trigger.

6. I could also NOT work and STILL get sick, like, in the unemployment line.

7. Staying at home all day every day is terribly boring and mind-numbing to me.

8. I like my organization, and they’ve had a hard time with turnover in my position, and I’ve looked forward to being the one to stick around for a while.

9. However, never knowing when, where, how or why I could end up really sick and in the hospital doesn’t help THEM out much, in terms employee stability. Especially since one of the early onset symptoms of an attack can be forgetfulness and confusion. Which did happen last time, leading me to screw up simple assignments, leading my boss to lose her shit, leading me to feel more stressed out, which brought on, well… you know.

10. We’re so up the creek in terms of money, and I mean it.  Have I made that point?

11. However, I have to believe that, in the words of one of my wiser friend’s very wise husband, “Everything will always eventually be OK.”

So Tuesday I lunched with my boss, and let her know the verdict.

I will not be returning to work.

Eric and I have decided that it’s not worth risking my health. If the job was in a different, less poisonous location, then MAYBE I could try it, but that doesn’t take away the stress, which could send me to the moon at any point, nor does it have any baring on me being exposed to a trigger outside of work, leading to an attack, which could knock be out again. I hate having to quit, but for my health, and for the well-being of the organization, I really think it is the best thing to do.

So now my new exciting mission in life is to start the process of filing for Social Security Disability. All of my doctors have encouraged me to do so, and have said they’ll provide whatever documentation is necessary. So I know I’m legitimately in need of it, but I can’t help but feel a little loser-ish. I mean, it’s not like I’ve thrown my back and can’t stand on my feet for more than 20 seconds, or like I lost an arm in a machine at the factory, or the explosion in the lab left me blind. Some days I feel completely normal and healthy, and I hope to have more and more of those days in the future. But the reality is, I never know when it could strike again, and knocking out extraneous exposure to triggers is crucial, as every time I have an attack, there is potential for more permanent nerve damage, or for the severity of the attacks to increase, leading to paralysis, especially respiratory (read: not being able to breathe,) or so I hear.

And maybe in a year or two I’ll feel more in control and I’ll be able to hold down a job, but for now, I don’t feel in control at all. I’m still on a good deal of morphine, and still puke if I look at the wrong food sometimes. I’m also having nerve pain issues more these days, especially in my face. Which Eric enjoys, because every time I say my face is hurting, he gets to say “Yeah? It’s killing me!” Ha.

So, maybe we’ll be really poor, but truthfully, we’d probably be poorer if I went back to work, thanks to the medical bills I’d wrack up.

At least this year, neither Eric nor I will be working on Christmas.

Oh, what have I done. Sigh.


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.



30 10 2009

Ladies and gentlemen,

I give you…

Purple Pee!

Number one: taken about 10 minutes after peeing. It had already darkened some, but not much. Sorry, I’d have taken an immediate picture, but was not fully prepared.

Number two: taken about 30 minutes post-pee. Getting darker. Iced tea.

Number three: about 50 minutes post-pee. Soda.

Numbers four and five: Just over an hour post-pee. This is probably about as dark as it’s gonna get today. It’s still out there, so if it gets darker, I’ll update.

Now, this is mild compared to what it was during the attack, but still. I bet YOUR pee won’t change colors! And see what I mean about it not really being purple? It’s more deep brown-red. Whatever. It’s not yellow. That’s the point.

Hope you’ve enjoyed the side show, folks. Donations can be placed in the jar.

*Disclaimer: Those of you who come to our home frequently know that we recycle glass jars by using them as drinking glasses. Don’t worry. The one used in this experiment will die its proper and due death in the recycling bin. You’ll never drink from it.