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.


Addendum to Friday night’s post.

13 04 2010

Like I said.

Money makes the drugs makes the world go ’round.

Read that.

And hmmph.

Calling all vampires!

12 04 2010

I forgot to tell you all about the phlebotomy thing.

So, for whatever reason, getting the hemetin infusions, while good for controlling porph attacks, can also increase hemin levels (duh, right?) which means too much iron. High levels of iron can lead to an attack, and I was even told by my hematologist that she’d like me to stay on the “slightly anemic side.”

So, only a couple of weeks into the treatments, my iron levels were too high (of course, because it’s me, and why wouldn’t they be?) (And also, phtthtthtth to all you people who think that my being vegetarian means I’m a walking medical journal entry for anemia.)

So, when the iron is too high, the way to remedy that is to bleed me. Yep. Take the blood right outta my veins. Stick the leeches on and let ’em go.

Not really leeches.

The nurse used my port, rather than an arm vein, and was supposed to take 20 viles, but could only get to 17 because the port got all backed up with clotting blood.

And here’s what all my blood looks like.

mmmm. bloooood.

Yep. There it is. Just chillin on the table. Ready for the ol’ garbage can. Which I felt totally guilty about, by the way, since there was a patient RIGHT NEXT TO ME getting a blood transfusion. I felt so dirty, like I was burning dollar bills in front of a homeless person or something. (My nurse told me that years ago a patient who got regular phlebs would take the blood home in a plastic freezer bag and use it to fertilize his roses. But hospital regs have since changed and they won’t let me take mine home to fertilize my roses. I asked.)

Yeah, I almost fainted when it was done. Not because of the blood loss. But because of the freaking blood loss. Seeing it all just sitting there in tubes on a table…. It was so strange. Blood is life, you know? I watched it pour out of me and fill up tube after tube and I wondered if they were going to leave me with any, and I sort of symbolically felt my body collapse a little, like it was sinking in on itself. Like a beach ball with an air leak.

It’s a very surreal experience, a phlebotomy. Lucky me, I get to look forward to more!

I have to admit, it was made all the more interesting by the fact that I was, at the time, reading through the stupid Twilight series, and I couldn’t help but note all sorts of dumb irony: the timing of my decision to read my first ever vampire tale (and a lame one, at that,) having my blood sucked, having it sucked because of the disease I have, which is responsible for the myth of vampires in the first place… It’s all just stupidly too much. Seriously, I think I’m growing fangs. Right now.

What Would a Porphyric Do?

9 04 2010

(I’m trying out a new look here. I felt the other was getting a bit stale. I may change it again, until I’m fully satisfied. I wish I knew more about how to make it look exactly how I want, but for now I’m stuck with the freebie themes that wordpress provides. Unless somebody brilliant wants to help me out in exchange for some gluten-free brownies.)

I’ve been getting a lot of messages and emails lately from people who are new to the world of porph, or who are waiting for a diagnosis. It’s driving me nuts. Not that I’m getting contacted,  (AT ALL! Keep ’em coming!) but that so many people have one of the same two stories: 1. They’ve been diagnosed, and now are facing a world of doctors with no information for them, or B. They’ve done their research, their symptoms match up, and they’re desperately seeking a medical professional to believe them and test them PROPERLY, so that they can get a diagnosis.

I have to say, I’m pretty darn lucky that my story went the way it did. I only spent 4 agonizing hospitalized days before I was handed a diagnosis (if you don’t count the 15 years of mystery symptoms and ER visits.) Many people suffer through days, weeks, months, even years, in that kind of crisis, in and out of hospitals, with incorrect diagnoses, before a doctor will land on porphyria. I don’t understand it completely. It’s a disease. With a list of symptoms. And tests that can be done. Yes, it’s rare, yes the test is a little tricky, but it absolutely exists, so why are doctors so hesitant to “go there”?

I wish I could give out the right answers to everyone who writes to me asking if I know what they should do next, but I’m just figuring this shit out myself. I have no idea what I should do next! I get most of my advice from the yahoo group of porphies, and from the APF. But the thing with internetting it is that I have to censor the information as I see fit. Pick and choose. When it comes to medical information, so much floats around and not all of it is good. And I’m the first to admit that I’m REAL gullible when it comes to anything medical. I’ve learned to stay away for the most part, but I’ve been known to spend hours on webmd, and at the end of a session, I’ll have diagnosed myself with 24 different ailments, and when Eric comes in from work, I’ll explain to him slowly that we only have a matter of weeks left to be together, because my watery eye is a sign of West Nile Virus, and my  bad breath points to pleurisy, which is almost certainly a sign of heart failure, which was probably brought on by cardiomyopathy, a result of drug abuse and WHY DID I HAVE TO TAKE SO MUCH ADVIL FOR PMS WHEN I WAS IN COLLEGE??? WHAT WAS I THINKING!!!???

So yeah. No more wembd for me. At least the yahoo group is full of real, actual porphies who have lots of experience being porphyric. And that’s worth loads in a world full of doctors who don’t bother researching the disease because so few people actually have it, and they can’t make money off THAT, now can they?

The APF has named April 17 – April 24, 2010, National Porphyria Awareness Week. I’m not usually psyched about so-called awareness campaigns for diseases, because the way I see it, we’re all afflicted with something, and we should all be aware of each other all the time as humans. Being well and getting good, solid, healthful care should be a given. I shouldn’t have to run- or walk- or jumprope- or bowl- or rock (in a chair)– for-a-cure. I shouldn’t have to don a rainbow’s worth of colors of rubber bracelets to let the world know that there are people who have diabetes or cervical cancer or ingrown toenails, or to remind us to all stay fit and feel our boobs and get prostate exams and notice irregular moles. We shouldn’t have to “fight” for our “cause” to “win” the “race” for money, just so we can all be healed and well. Please don’t think I’m an asshole. I’m not. (Insert “that depends on who you talk to” joke here.) I get it. People get diagnosed with a disease and they are overwhelmed with emotion and underwhelmed with information and they are scared. Or they’re told that their child has something terrible and probably won’t live, and they become obsessed to the core of their being to change that prognosis. God knows I would! I just think we shouldn’t be forced to waste our precious, valuable, life-giving energy on raising funds to save our lives, or our children’s lives, or our sisters and brothers and neighbors and best friends and grandmothers lives. Why can’t medical research be something that our community views as a necessity and happens for each individual citizen (and when I say citizen, I of course mean of the world.) Furthermore, why can’t we live in a non-toxic world? One where we’re not all poisoned by emissions, saturated fat, lawn fertilizers, plastics, autolyzed yeast extract, extra biggie super gulp Mountain Dew, clorox, marlboros, rGBH. Why can’t our children be fed nutritious, pure, fresh food when they go to school? Why aren’t we all so acutely familiar with, and aware of, our bodies that we don’t feel we have to rely on a dude with a white coat to tell us if something’s amiss?  Why can’t we embrace physical activity from the get-go and ride our bikes to the market, or live within walking distance of, I don’t know, anything? Why can’t real, true healthfulness be a given, a part of our Normal, and not just the sort of chatter we expect from extremist crunchies in birkenstocks?

Alas, it’s not my world we live in. Our “health” system does ABSOLUTELY, INDISPUTABLY revolve around $. And I must concede that if there’s hope for every single porphie to get a prompt and correct diagnoses, and receive thorough, valuable and proper care, then we’ll just have to appeal to the ones with the dollars. Turn porphyria profitable, right? And the way to do that is to make sure as many people as possible know about it.

So in honor of National Porphyria Awareness Week, I’m going to post every day during that week, and scheme up some goodies. I want to do a something or two during the week to “raise awareness,” but more so, I’d like to take the week to brainstorm, along with all you readers, about how to carry out an ongoing campaign that extends beyond the boundaries of a week and a foundation. (Not that I don’t appreciate the foundation and it’s existence.) Something meaningful that can take a tiny little step toward helping us all think of this disease as an ailing branch of the diseased tree of life… How should we better nourish the soil, and make the roots stronger?

I’m going to give a glimpse of the Daily Life of Sabrina during that week. You’ll get to read all the minutiae that normally doesn’t get posted, as my blog has thus far been reserved for my Big Moments. But I’d like to share all the little dirty details, and how I’m managing (or not) to cope with them. For instance, right now, the awful nerve pain in my neck and left hip is kicking in from sitting at this computer for too long, and I’m also super exhausted and need glucose. So I’m going to pop some vitamins with a glass of glucose water and try to stretch my legs before I plop on the sofa and let the wave of fatigue pass (hopefully.)