Wednesday, December 31, 2008


I know why God did not call on me to free His people from Egypt. If He would have given me the staff Moses had, instead of using it for Holy purposes, I would have gone around beating Pharaoh over the head with it - repeatedly. Every time he agreed there was a problem with holding the people captive, and every time he said he would let them go and didn't and acted like he didn't know WHAT I was talking about.....WHAM!! Smack upside the head. And I would have enjoyed it. I would never have made it to the big events of plagues and the like and I would have had zero lasting impact, except to give Pharaoh an elephantine headache and, with any luck, a concussion. God had much bigger plans for Pharaoh (AND Moses) and His were more effective and long-lasting.

I'm trying to keep that in mind as certain doctors in my employ (yes, they are being paid by us) condescend to me while spouting erroneous information and often mistake-laden advice. So far I have resisted all urges, strong though they may be, to conk my doctors on their collective heads with my hefty medical chart. I have to remind myself I doubt this would be deeply instructional to them. It would temporarily provide a burst of fun and entertainment in my life and, in light of the circumstances, that is not without merit. However, my celebratory moment won't further my diagnosis so, I abstain.

By way of disclaimer I want to say there have been some intelligent and caring diagnosticians who have graced my life with true concern. They remain humble, life-long learners who have not confused the image in the mirror with the God of the Universe. Unfortunately, theirs appears to be a small fraternity and I can only hope it is accepting new members.

Back to my rant......a couple of my current doctors are quite the Balaam's Donkeys without near the wisdom issuing from their equine lips. (If you've come here to listen to me be politically, theologically, or eschatologically correct then all I can say is, "Bummer!") These "Brothers of Perpetual Illness and Pharmacology" condescend to grace us with their proclamations and issuances concerning our health. We are expected to bow to their superior wisdom in much the same way the kingdom was expected to hail and applaud a very naked Emperor strolling by in his "new clothes." An example:

Two days ago I followed up with ONE of my specialists (I have to employ a different doctor for all varying body parts as no one body part is connected to any other.) This particular doctor looked at one set of tests which were positive, another set of tests which were negative and positive (both looking for porphyria) and announced, "I think the best thing to do is just wait until you have another attack and then, when you go to the emergency room, tell the doctors to check you for it." Mind you, this advice from a physician who has only crossed paths with six porphyria patients in his entire career. His advice to "self-advocate" would be presuming:

A. I am not damaged neurologically as in the last two attacks
B. The hospital would have any idea how not to compromise my labs (which has already been done because they don't see porphyria often and don't know how to properly handle lab samples - they have to be kept in complete darkness like vampire blood)
C. I am not given meds which could kill me
D. Part of Balaam's herd isn't working that night, someone is actually educated about porphyria and, unlike YOU, dear doctor, listens to me.

Now, I don't mean to go all "feminism" on you here but I can't imagine a MAN showing up in his doctor's office with a heart attack only to be told, "Well, Fred (especially if that wasn't his name) let's go ahead and letcha have another one of these old things and, if ya live, maybe we can figger somethin' out for ya."

Porphyric attacks can be anywhere from mildly damaging to fatal as there is an enzyme missing that helps you clear toxins from your blood. These episodes can be brought on by a genetic disorder or other conditions. But under no circumstances should a physician recommend someone have one. Unless it was for themselves and then, I'm all for it.

If you have porphyria, there are many, many medicines you can't take because they can trigger an acute attack. You have to be hyper vigilant about what goes into your mouth. I have always had lots of reactions to pharmaceuticals, as have many people in my family. Reactions don't mean you have porphyria. But if you have other signs and symptoms, could be. Have you ever urinated what looks just like dark port wine? Yes, many times. Swollen liver/spleen? Check. Neurological damage? Yes. Bad labs? You got it. Severe abdominal pain that feels like you were just shot at point-blank range? Yes, yes, oh-my-possibly-inappropriate-word, yes. Ever had positive labs for porphyria? Uh, yeah. So I'm just thinking, it might be porphyria. But now my Job's advisor wants me to just go ahead and have another attack.

He wouldn't be alone. One doc wanted to treat me for an ulcer because of the abdominal pain. When I told him another body-part doctor, my gastroenterologist, had been part of the paparazzi at my last endoscopic photo shoot and assured me I did not have an ulcer, he continued to try and prescribe FIVE DIFFERENT ULCER MEDICINES. I turned each one down, repeating, calmly (believe it or not), I did not have an ulcer and, besides, I couldn't take those medicines as I had already been on them for what the gastro guy DID find: stomach irritation. And they all caused me major side-effects. He was so moved by my touching tale that he picked up the prescription pad he had been writing on and tore up the paper right in front of me with a heavy, knowing sigh. Knowing, that is, I was a pain-in-the-posterior patient who could simply not be fixed with a quick prescription. The worst kind. We make them look bad. I realize that and sympathize (okay, no....not that's a lie).

I know I'm looking for the nearly impossible: A caring, smart-as-a-whip doctor who, if he or she doesn't know, won't give up and consign me to more diminishment; who won't see this as a personal affront to the ego but as a challenge and an opportunity to help.

Anyone who has been through a medical mystery or major difficulty has asked the question, "Why can't I get answers or a doctor who knows what's going on?" That's normal. And we can't give up. But I also ask God, "Why am I hitting so MANY brick walls?" The only thing I can think of is, "Hey, it's not all about me." For every Robynn Reilly who squawks and talks and rattles cages, there are hundreds of people who don't know what to do and will remain caught in their illnesses. Disturbers can make a difference. We have to possess the determination to fight back for ourselves, our families, our friends. So, God knows I tend to dismantle brick barricades one way or the other and perhaps He has seen fit to use me in the "War of the Walls."

I hope it's that noble. Knowing me? It's probably not.

Copyright 2008


  1. Oh Robynn - all I can say is Amen and I'm with you sister!
    Whoa -have you ever got a "way with words". I'll have to remember to have a dictionary at the ready each day, when I check your blog.
    I'll be back!

  2. I tried to access your new blogsite. I got a notice that said that it didn't exist. Will you double check the address please?

  3. You have just expressed, on a grand scale, what I've felt many times as I've waded through the medical community over the years. I hope more than anything that the perfect doctor for you will soon be found. He/she is out there ... it's like a soulmate ... you will find each other I'm sure. But I love your vigilant nature and I know God is using you in His grand plan. So keep fighting!

  4. Robyn's me...going back in your archives to look for Dad died of an auto-immune disease similar to Lupus...we went to specialists all over the country...covered our windows with special film to keep out sunlight, etc, etc. Diet and medicines--a huge problem. Dad even lived on baby food for a while. As a result, I have a major in "hospital," and therefore, forgive me if I am now so bold as to claim a very slight glimmer of understanding for what you are facing...I can better pray for you now, and I promise you, my sister, that I will regularly and passionately petition on your behalf! ~Janine XO