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.



Dr. Porphyria Himself: Part Two.

12 11 2009

The Appointment is now a thing of the past. The good news is that while having lunch at the posh eatery, I spotted some sweet, beautiful, holy sweet potato fries on the menu, and Eric and I decided that would be my post-visit reward.

We went back up to the office at 12:50, and were called back at 1:15. For my 1:00 appointment that I showed up at 10:30 for. I guess 15 minutes late isn’t so bad, except I knew once I was “in,” I’d sit on the table and wait for another 30 cold, boring minutes. I had my weight and height checked: Still 5’5″, and up to 118.3 lbs! My BP was 124 over 70, which was excellently high (for me) and normal (for the general population.)

After a 20 minute sit in the exam room, a nurse practitioner entered and asked why I was there. I told her I was hoping she could answer that for me. So I explained the history, and at first she was skeptical. I could tell. When I told her about the red pee in the hospital, she tried to blame it on a bloody bladder infection that was noted in my records. I had to point out that it was in fact suspected at one point that I had UTI, but it was ruled out. Which I knew, because I had spent the entire evening before pouring over the medical records from the hospital with a red pen, making notes beside each bit I disagreed with and thought was incorrect. Like the part about “Patient is a 29 year old white female [I agree with that,] who appears uncomfortable and complains of mild pain.” WHAT!??! Mild pain my ASS! Appears UNCOMFORTABLE! So, if screaming and begging to die is complaining of mild pain, I’d hate to see what it looks like for someone to complain of severe pain.

OH! Another story, related to the medical records:

I read a part that the same idiot mild-pain doctor wrote that said “Endoscopy reccommended, and the patient received endoscopy on 9/29/09.” I don’t recall ANY talk of an endoscopy, and I’m puh-retty sure I’d remember such an event. (Endoscopy is the act of shoving a camera on a tube down one’s throat and into the intestines and stomach to explore for goodies.)

Just to double-check, I went to Eric and said “So, this idiot doctor wrote that I had an endoscopy! Isn’t that crazy? I never had an endoscopy, did I?”


“Uh, yeah.”

Oh shit.

“Yeah, the surgeon came in on Sunday and we all talked about it a lot and thought it’d be a good idea, so they wheeled you out on Tuesday and you had it done. I waited in your room for you, and you seemed fully aware of what was going on.”

If I wasn’t before I’m now a true believer in the fact that our brains block out traumatic events to protect us or something, because goodlordyjesus I have NO recollection WHATSOEVER of any conversation about an endoscopy, much less actually having the damn thing done! I realize I was doped up, but I remember plenty of other things from those days, like conversations with the hospitalist about it probably being pancreatitis, and Rose trying to tell me I weighed 50 pounds, and the nurses calling for security when Eric lost his shit after they gave me an aspirin for the worst pain of my life. It just completley dumbfounds me that I have no memory at all of the endoscopy.

Anyway, back to Dr. Mezey: After I finally sounded like I new my shit enough for the nurse practitioner to start actually feeling sympathy for me, she said, “Well, let’s see what the professor has to say,” and stepped out of the room.

Eric almost fell asleep in his chair while we waited, so I mad him get up and move around. He moved to the exam table, dangling his legs, while I sat in one of the chairs and organized my notes. My nose started feeling itchy all the sudden, so I scratched it. And rubbed a bugger right out of my nostril, which planted itself firmly on the outside of my nose.  “You have a bugger,” Eric said. “I know! You wanna get me a tissue instead of just sitting there?”

Of course, at this moment, the handle of the door turned.

“Help me! Help me!” I hissed, glaring at Eric, who sat paralyzed and giggling. The door swung open all the way as I tried to wipe my nose clean… with my right hand, just as the doctor extended HIS right hand to greet me. I was panicked. Eric had now managed to secure a tissue, but it was too late. The little thing had latched onto my right hand, and it wouldn’t budge.

I held up my left hand to shake the doc’s hand, and Eric stood up and turned to face the doctor, passing me the tissue behind his back.

So that’s how it started.

Good thing is, Dr. Mezey is old. I mean ooollldddd. So I have very little confidence that he caught any of that nightmare, and even if he did, he strikes me as the type of old man doctor who wouldn’t find it funny or mortifying, because a bugger is just another part of the glorious and fascinating workings of the human body.

He started off by telling me that he’s no expert in porphyria. Excellent. Glad I made the trip. However, he had seen a couple of porphies before, and he actually had consulted one of the US’s porph experts several times, so he did seem to have a decent grasp on the disease. He helped me find some alternative nausea meds to use in case of another attack, since the ones I’d been given previously were actually unsafe. The nurse practitioner would flip through my giant binder, (the one I’ve put together with all sorts of porph info that I’ll keep with me at all times from now on, in case of an emergency,) looking up drug names that he called out, to check to see if they showed up on the unsafe list. He also found me a non-narcotic pain med to try to wean to, in order to get off morphine. Other than that, he told me things I already knew, told me it looked like I was doing a good job researching things on my own, and told me to avoid triggers.

And that was pretty much that.

Life changing? Not a chance. But I didn’t really think it would be. Now I can say I’ve been to Johns Hopkins, and now I can move on. I’m figuring out (again,) that this is MY health and MY responsibility. Doctors can help me in an attack, but only if I tell them how to help me, and otherwise, it’s up to me to stay healthy and research triggers and keep diaries to see what hurts me.

We made our way back down to the first level, where the posh boutiques were (the kind where old ladies who wear hats shop for stuff to put in giant gold-gilded shopping bags and look burdened,) and we bought Adelaide a posh present from a posh baby boutique, and I ate  posh sweet potato fries. And then put on my hat.





Dr. Porphyria Himself: Part Uno

11 11 2009

We (Eric and I) are awaiting my appointment with Dr. Mezey. He’s the Johns Hopkins miracle worker who’s supposed to change my life. So far, we’re not off to a great start.

We arrived promptly at 10:30 this morning, after a 2 hour drive from Eric’s parents’ house in Round Hill, for my 11:00 am appointment time. The receptionist looked up from her magazine long enough to ask if I had my paperwork filled out that they mailed me. “I never received any paperwork,” I told her. I showed her the only two peices of paper that cane in the mail: directions and instructions. (I later watched two other patients check in and have the same conversation.) She gave me the paperwork to fill out there, and told me if I didn’t finish before I was called back, I could finish it later. I was, in fact, able to finish it before I was called. And by 11:30 I was still waiting.

Eric walked over to the window, and after a couple of polite “ahems,” pulled her out of her magazine to ask if she could remind the doc that his 11:00 is waiting.

“No, because he doesn’t see patients until this afternoon.”


“Her appointment is at 1:00,” she said, as she skimmed a lipstick ad in the issue of Glamour or whatever that was oh-so-enthralling.

Ok. “So you didn’t think to clear that up with me when I checked in at 10:30, and wrote on the sign-in that my appointment time was 11?”


So we grabbed our stuff and headed downstairs for lunch, and I cried a little. This is the office of the doctor who’s supposed to chage my life.

By the way, we’re not at Johns Hopkins The Hospital. We’re at an annex, which also happens to be a super-posh high end shopping center with snobby eateries. Of course.

More to come after the appointment…

Eric points out the posh sandwich and soup at the posh eatery.

Eric eats his posh sandwich at the posh eatery.

I slurp posh soup at the posh eatery.

The posh indoor/outdoor shopping center with posh boutiques and eateries... and a not-so-posh gastorenterologist office. Way to find some office space, Johns Hopkins!

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.