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.💋❌⭕️❌⭕️



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.

New AIP treatment in the works?!?

22 05 2013

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.

Alnylams presentation:

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

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.

A Labor of Labor.

18 06 2010

So, I’d been waiting to post until I had something really great to update you on. Specifically, that I’d found a wonderful midwife and my plans for a homebirth were moving along smoothly. But that’s not what’s happening thus far. I’m going a little crazy, though, so I thought I’d take this opportunity to vent. And also, if I’m typing here, I can’t be obsessively checking my email, looking for a reply to one of the sixty-two emails I’ve got floating around out there to various midwives/doulas/birth class instructors, to which I’ve had NO REPLIES THUS FAR!

I thought I had the whole thing wrapped up. As soon as I found out I’m pregnant, I contacted a homebirthing midwifery duo, and explained my situation (porphyria and all,) and asked for a consultation. After our initial appointment, they said they felt comfortable enough with the situation, and trusted my instincts, and trusted that I would keep track of things during my pregnancy with my hematologist. Eric and I discussed whether or not we wanted to even meet with any other midwives. We agreed that we liked them, they seemed willing to take me on, and we just knew they were the right ones for us. So no, we would not even bother interviewing anyone else.

The following week was when I got sick, so I weathered that storm, and when I came out just fine and we knew Babo was fine, we decided we’d contact the midwives and tell them we’d like to sign a contract with them. The only thing holding us back was the price. Homebirthing midwifery care is NOT covered by insurance, (because if we all had our babies at home, how would the hospitals make their money,) so we’d have to come up with the money on our own. Compared to a hospital birth, homebirth is FRACTIONS of the cost, but it’s still a hefty chunk. Their particular rate, which seems to be the going rate around here, is $3000. That covers all prenatal care, the birth, and postnatal care. (Compare that to a hospital birth, with the national average cost being something like $15,000-20,000, JUST for the birth itself.)

So three grand isn’t much, relatively, but it has to be paid in full by the 35th week of pregnancy, and that was going to be a strain on us. So when I emailed them to say we’d like to hire them, I also explained our dire financial situation, in the hopes that perhaps they offered an (unadvertised) sliding scale. I also told them that I’d had a brief attack, but that everything was fine, and now I knew that the worst possible scenario wasn’t as horrible as I thought it’d be.

So, about eight days after I sent that email, I got one back saying that, in light of the recent attack, they were now feeling uncomfortable and hesitant about taking me on. They’d have to discuss it and get back to me. I was crushed. I’d already gone over and over with them how important it is to me to stay out of the hospital, and how my pregnancy is not a “high risk” pregnancy, the way it is for someone, with, say, insulin-dependent diabetes, or someone with, I dunno, a heroin addiction. Really, there’s no risk posed to the pregnancy at all, which I’ve had confirmed by a couple of different hematologists.

I don’t think I have the energy right now to explain all the reasons I believe in homebirth. I just do. It’s safer. It’s better for mom and baby. It’s statistically proven. If you don’t believe me, research it yourself. And don’t believe what your favorite OB says on the matter, because OBs are surgeons, and have been trained that all births are potential emergencies and that babies need to be rescued from the uterus.

For these and many other basic, fundamental reasons, I believe that healthy mothers should be having their babies at home, away from the risk of dangerous interventions and infections that come with hospitals. And I believe that I, in particular, must stay out of the hospital.

Let’s review my triggers: Stress. Medications. Infection. Chemicals. Bleach. Reduced caloric intake.

Let’s look at a hospital: A staff that is not properly prepared to handle natural childbirth, nor is prepared to handle porphyria, which certainly would be STRESS-inducing for me. A staff that is trained that all things should be treated with MEDICATION, especially childbirth. Hospitals are hotbeds of INFECTIONS. The rooms are cleaned with harsh CHEMICALS, and the sheets are BLEACHED til there’s no tomorrow, and there’s no avoiding these two things, no matter what. And in a hospital, women are strictly FORBIDDEN TO EAT while laboring, so that when they have to heroically cut you open and rescue that baby, there’s no food in your stomach to pose a risk of aspiration.

Need I say more?

Now, if there’s some real, true, medical emergency while I’m in labor, I won’t hesitate to transfer to a hospital, if my or my baby’s health or life is in danger. Otherwise, my butt does not belong in a hospital.

After I got that email from the midwives, I twiddled my thumbs, awaiting their decision. After about 12 days of not hearing anything, I finally sent another email, making my case once more, but telling them that if they were at all uncomfortable with me, then we’re not a good fit. I certainly don’t want a midwife around who’s paranoid about treating me.

After another FIVE days or so, I finally got the word from them that would not be taking me on. They only specialize in “low risk” pregnancies. Oh. My. Lord.

How many times do I have to explain this??? I’m NOT HIGH RISK, PEOPLE! Just because I have a disease with a name doesn’t mean something bad will happen. The worse thing that porphyria brings is an attack, right? I feel attacks coming on for days. If I were to have an attack while pregnant, I’d get with my hematologist, and we’d treat it and stop it. Done. It’s not like an attack can come out of absolutely nowhere, and send me in to anaphylactic shock. If something about labor brought on an attack, I’d have plenty of time to deal with it. It’s not going to make me seize up and foam at the mouth all of the sudden. It just doesn’t happen for me that way. Besides, I’m being super careful about carb intake and getting glucose treatments every other week, and my hematologist is seeing me monthly to monitor me.

I really can’t help but think that this is the issue: I am having a homebirth, and something goes “wrong,”… Let’s say the baby turns breach all of the sudden, which is rare but could happen, right? So we decide to transfer to the hospital. Of course, baby being breach has nothing to do with porphyria at all. But we get there, and I tell the OB on call that I’m transferring from a planned homebirth (already a strike against me, since OBs and hospitals are not known for being friendly to HB transfers,) and that I have porphyria, so we’ll have to take a lot of consideration in administering any drugs that may be necessary. Then the medical community has a really good reason to give the midwives all sorts of guff, right? “How dare you take on a patient with porphyria! You never should have taken a high-risk patient!” Then the midwives come under scrutiny just because, and they have to deal with that fallout.

There was a midwife in the area recently who made a couple of decisions differently than the medical community would have liked, and she came under such fire that she decided to stop practicing. On the one hand, I get where these midwives are coming from. If they sense any chance of the medical community being able to give them crap, they back off, in order to preserve their practice and offer homebirthing midwifery care to as many women as possible. But on the other hand, in doing so, plenty of deserving women are robbed of the choice to have their babies at home. AND, we’re subjected to the same big-medicine/insurance/liability game that we’re trying to avoid in the first place.

I’m trying to take this in stride, and just calmly move on to the next option. The problem with that is that there aren’t but so many options around here. So I’ve literally sent emails to every midwife I can find in the area in the last week, and I’ve heard nothing. Not a freaking thing. It’s like I’ve been black-listed or something.

And now I’m 15 weeks pregnant without a practitioner, and I’m not sure what my next move should be. I need some sleep, and I’m certainly not getting any these days.

Keep your fingers crossed for me that someone will A) write me back, and B) trust me. I’m tired of begging people to trust me when it comes to my health and my body. Really, really tired. But I guess I just have to keep on speaking loudly and clearly, until someone stops and listens.

National Porphyria Awareness Week Day 3

21 04 2010

My post today is in response to some of the comment threads on previous posts. I started replying to each specific comment, but then realized that I should bring the discussion of healthfulness to the table for all my readers.

It fits in with the topic of awareness, just because.

Several of you have written about being diagnosed at some point with IBS. Irritable Bowel Syndrome.

I was told I had IBS many years ago.

I’ve also been told I’ve got endometriosis, interstitial cystitis, fibromyalgia, chronic fatigue.

The common thread? These are all diagnoses of elimination. In other words, people who have pain, but no apparent source of this pain, get told they have one of these things, and are then told to take some pharmaceutical and shut up. A gyno told me that if I didn’t want to take birth control pills for the endo, then there was nothing she could do for me and I should leave. She wouldn’t tell me what CAUSES it, what I can to do relieve it non-drug-wise, what it was exactly, or even if I definitively had it.

IBS falls into that category: It’s abdominal pain and upset and a medical doctor can’t tell you exactly why it happens. They may make up some theories, and then tell you it’s your fault: You’re not eating the right thing, you’re drinking too much, you’re not exercising enough. Just the name, Irritable Bowel, implies that our body, and therefor our willful selves, aren’t cooperating. Like a naughty child. I can’t tell you how many times I’ve left doctors’ offices feeling guilty. As though I’ve done something wrong in my life to deserve pain. It’s something I’ve internalized and now hold as a deep-rooted belief. I’m having to spend a lot of energy correcting that now.

Other traditions that look at the whole picture of health, though, will tell you that something like IBS is an energy stagnation (or something similar,) which I truly believe. Whether it’s Traditional Chinese Medicine, Ayurveda, or some other Eastern philosophy, I highly recommend exploring the emotional and spiritual causes of pain.

Our abdomen is a very powerful place in our body, full of our life energy: It houses our organs that process food for energy, it houses our reproductive organs, it becomes a home to our babies, it controls the very air we breath.

IBS is a cop-out. A western medical way to explain away physical manifestations (including organ damage,) of emotional and spiritual pain that many western doctors aren’t prepared to deal with, because a pharmaceutical company hasn’t told them to do so.

That said, I suggest trying a gluten-free diet. It helped my stomach issues immensely. Trial eliminations of gluten, dairy, and then soy, may uncover mild (or not so mild) sensitivities and allergies that we learn to live with, unnecessarily. I also HIGHLY recommend the book Women’s Bodies, Women’s Wisdoms by Dr. Christiane Northrup. She’s a gyno who got sick of only treating the physical symptoms over and over, and decided to explore the other aspects of our complex well-being. The book is my go-to for almost everything that ails me. It’s also shown me peace when I thought there was no peace to be found.

And truth be told, Porphyria the Disease really responds to energy treatments. True, science has found the architecture of the disease, and we have (mumble-jumble) explanations for what happens and why (kind of.) But what about that abdominal pain? Even though it’s a recognized symptom of an attack, there’s no scientific explanation for it. Nothing shows up on an x-ray. Some people even undergo painful exploratory surgery, to no avail. The pain seems to originate from nowhere.

Or does it?

Some of the most effective pain relief I’ve experienced has come from deep breathing, meditations, and concentrating my own body’s innate healing powers on the pain. Just taking a moment to acknowledge pain and listen to it, wait for its message, is very powerful, rather than hurry to cover it up with drugs.

Now, my mamma didn’t raise no fool. I also know when to acknowledge my need for pharmaceutical intervention. Sometimes we have to break the pain cycle with pills, so that we can clear our heads enough to grapple with the underlying issues. I’m not objecting to all drugs all the time. I’m suggesting that we stop relying on them as the end-all be-all for health issues.

If any of you decide to pursue any of the Eastern traditions or food eliminations, please update me! I want to know how it works out for you.

Here’s to our health revolution!

National Porphyria Awareness Week Day 2

20 04 2010

I’m very, very tired. Thanks to Babo. So this may be a bit cheeky and incoherent and come across as a not-very-thought-out juvenile rant, but it’s what I’ve got the energy for.

Quit your smokin.

At least around me.

Here’s the thing:

I used to smoke. My husband used to smoke. But I have to say: when I smoked, I like to believe I was a relatively considerate smoker. I didn’t smoke while standing in amusement park lines. I didn’t go to outdoor concerts and light up in the middle of the crowd. I didn’t sit on sidewalks outside of my place of employment and blow smoke on all who entered. And I certainly never even CONSIDERED lighting up when there were children around. Now, I’m positive that more than once, it’s awful likely that my smoke touched someone’s nose who didn’t want it touched. But I at least made huge efforts to avoid that.

And now, as the fates would have it, smoke can make me very,very sick. True, it can make you very, very sick, and everyone in the world. But it can make me FOR REAL, immediately, sick. Me and every other porphie, and asthmatic, and people with allergies, and cancer patients, and folks with Multiple Chemical Sensitivities (which comes along with LOTS of conditions,)… And my message to all you smokers is that you never know who is or was or will be standing next to you, or who is or was or will be forced to pass through your stupid offensive smelly cloud.

You know it’s stupid. You know it’s offensive. And you know it’s smelly. I’m sorry you’re addicted, and I understand that you have the “right”, but puh-leeze. Use the part of your brain that is not yet rotted with tar and think about how you’re affecting all the people around you. (Of course, maybe you flat out don’t care, in which case, I, in turn, wish you many nights of insomniatic hacking.)

The other day, my friend Heather, the other porphie, met me at a playground so that the two year old little girl she babysits could play with my  Adelaide. The playground we chose is a Norfolk City Park playground, which happens to be located directly across the street from the campus of the hospital where she and I get our weekly infusions.

We arrived around 11:45 or 12, and it seemed like a busy little park. But then I realized that our two girls were the only children actually playing on the playground, which was odd, considering the amount of activity around the playground.

Then it dawned on me.

All of the benches were full of hospital employees. In scrubs. Wearing hospital badges. Smoking cigarettes.

Not fewer than ten of the shits.

The hospital campus, which is comprised of Sentara Norfolk General, Eastern Virginia Medical School, and Children’s Hospital of the Kings Daughters, banned smoking several months ago.  Smoking is not allowed anywhere on the property, including the farthest reaches of the most remote parking lots.

So instead, the employees are going across the street to the FREAKING PLAYGROUND so they can blow their nasty shit in our CHILDRENS’ faces.

They even set up a little coffee can ashtray for themselves. Which, later during the day, an 18 month old discovered and picked through before her pregnant mom could hobble over and stop her.

I’m so absolutely appalled by the absolute GAUL of these people. They’re medical professionals, and while I don’t expect them to be perfect in their personal lives, nor do I care if they are, I can’t believe they WANT to humiliate themselves in that way. Because that’s what they’re doing. I, and Heather, and the other moms, had no respect for these doctors and nurses, and if I’d recognized any of them as any of the nurses that treat me, I’d request another nurse. Wouldn’t skip a beat. And how would THAT look their superiors? All I could think was that some of them must work at CHKD, and treat dying children all day, and then use their lunch hour to contaminate the nearest playground with toxic air. Idiots.

I’ll be sending letters to the hospital and the city, asking them to work together to remedy the problem, and it probably won’t make a difference, because it is, after all, an outdoor public space, and I guess people have the “right” to light up there.

I just wish that I had the right to not get sick there.

So next time you’re about to step outside and partake of your nasty little habit in a public space, just please, for my sake, take a half a second to consider who you may be forcing that horrid stuff on. And don’t give me any lecture about your “rights” when I ask you to take your cancer-causing, attack-inducing air pollution elsewhere.

The end.

Happy National Porphyria Awareness Week!

20 04 2010

Sound the trumpets! Strike up the band! It’s National Porphyria Awareness Week, everybody!

So, I’m late. In my head, the week was from Monday through Friday. But upon further inspection, I realized that it actually began Saturday, and goes through Saturday, but a week starting on Saturday just doesn’t make sense to me.

And since I missed yesterday’s post I’ll do two today.

I’ve been a little distracted from all things Porphyria, though. Last week Eric did something to pinch his sciatic nerve, and he pretty much couldn’t get out of bed all week. A trip to the ER and then to Patient First, and now to Dr. LaPlace, tons of pain meds, steroids, antispasmodics, muscle relaxers and anti-inflamatories, hot tubs, pools, steaming showers, and a bunch of massages with holistic herbal massage gel (given by yours truly,) and he’s finally able to hobble around enough to at least get to work, but it’s certainly not cured.

Usually I’m the patient and he’s tending to me. Since I’ve known him he’s never been sick for more than two days. I don’t like this one little bit. I’m exhausted. He’s been trying to be as much help as possible, but most of the housework and child-rearing was left to me all week, and my poor little porphyria body can’t take that.

Oh yeah, and did I mention I’m pregnant?


We found out last week. I was going to wait at least a couple of weeks to go public, but last Saturday, Eric was bored and home all alone, and decided to post it on Facebook.

So, as soon as I found out, I emailed the hematologist, Dr. Bremmer, and let her know, because there’s not much research that I can find about the safety of hemetin on a pregnant woman, so I’m giving it up for now. I’ll still go in weekly for glucose infusions, just to give me that extra boost of protection. Especially because it may get hard for me to keep anything down soon, and that’s a perfect trigger for an attack.

But if this one is like my first, I’ll feel nauseated all day (much like I do right now,) but never actually throw up, and in fact, I’ll stuff my face with snacky food, looking for the anecdote to the nausea.

My pants are already snug.

So, the first trimester of pregnancy makes me super tired and annoyingly nauseated. Hmmm… Sounds like a normal day with porphyria to me!

I am more tired than I was, if that’s even possible, and the nausea is more persistent, and my food tastes and distastes are getting weird. It will be interesting to see if my life is substantially more difficult while pregnant than just while porphyric, BUT. The silver lining is that supposedly, the hormones that are making me so tired and sick are also supposed to protect me from an attack. The little information that’s out there about porph during pregnancy supports the theory that porph goes into remission for most pregnant women for those 40 weeks. Once Babo pops out, though (Adelaide has named her/him Babo,) the drop in hormones may bring on an attack.

Although, I’m not sure how breast feeding plays into that. I BFd Adelaide for 27 months, and fully intend to BF Babo for as long if not longer, and I’m pretty sure that all the stuff I read about the drop in hormones stimulating an attack was assuming that BF was not in the picture. (Which makes me crazy, but that’s another story.)

I’m very sad that I won’t be able to enjoy any mojitos on my porch this summer. But we’re all super excited to welcome Babo into our lives in December.

This blog just took on a whole new attitude, by the way 🙂

I’ll be posting tonight my official Tuesday post, as this is my offical Monday post. Tuesday’s topic: Be Aware of Your Environmental Toxicity. In other words, stop blowing your F-ing smoke in my face.