referrals only from now on!

I had a really unpleasant experience Friday morning with an orthopedist. He asked for my history so I told him i had lupus and his immediate reaction was "who told you you had lupus?" "about 20 different doctors over about 18 years." Then he goes on to tell me he doesn't believe that diagnosis until he runs his own test or talks to my rheumatoloist. Then he wants to know if I had an internist, a cardiologist, etc. I say "no, I get tired of going to appointments and they're running redundant tests, so I just go to one doctor. I used to have all those specialists but I don't feel I need that many doctors." I guess in his mind, if i don't have about 10 doctors, I must not have lupus. Now look, I don't *want* to have lupus. I wish I didn't have lupus. I hope one day I don't have lupus. And now I'm sitting here having to defend this diagnosis to this jerk, when I didn't even go in there about lupus in the first place. I just want to know what this thing is on my friggin' arm. Is it a tumor? A mass? a Cyst? Why are we having this conversation???

But I can't let this go, so I convince him I have lupus by telling him the details of my most recent labs: postive ANA, double stranded DNA, high sed rate, nephritis. I tell him I've been on prednisone for over a year at 3 different occasions.OK, now he believes me. But now he has to scare the crap out of me by telling me how common it is for people who've taken prednisone to end up having hip necrosis (bone death in the hips). Gee thanks, that's really helpful. (How'd you like some face necrosis?) And so relevant to the conversation about whether or not i have cancer in my arm. Oh and if I ever have hip necrosis, I should come back and see him. Not no but hell no.

Now that we've sat through 2 excruciating opening acts, can we get on with the main attraction, the whole point of my being here? The test results, please. Well, it's a tumor, he says, delivered with the same dispassionate tone of voice you'd use to tell someone that the telephone bill just arrived.

Now he wants me to get this isotope test to determine whether it's benign (or not). I express concern- aren't they going to shoot radioactive dye into me. His response (and I quote) "so what?" So my grandmother died from an iodine test, that's so what. I have a history of kidney failure, and shooting poisonous crap into my veins is risky, that's so what.

Well the good news is, he is not qualified to work on tumors, so I never have to see or talk to him again. I have to go to an orthopedic oncologist. He referred me to one, but it occurred to me that anyone who's a friend of his might share his bedside manner, so I decided instead to save myself further insult to my existing injury, and possibly further injury as well. I suspect if they killed me or accidentally lopped off my arm they'd still send me a bill and say "so what?"

Lucky for us we have a friend in the area who is a really good doctor and a decent person, so we called him and got a referral to a different ortho oncologist. I'm not going to any more doctors without a referral from someone who knows them. And if they don't like it, "so what?"

In the future, I'd love to be able to take the "Who told you you have lupus" as a compliment to my appearance rather than an insult to my intelligence. I am glad don't look sick right now. But I don't like defending my diagnosis. Do doctors do this with other diseases? "Who told you you have cancer? Who says you have MS?" I don't know, maybe they do. But there's got to be a better way to present such a question.

taking requests

OK my fellow autoimmune sufferers.I am now taking requests!
what topics would you like me to attempt to write about in my next batch of humorous songs?
So far I've written about prednisone, the 24-hour pee in a jug test, the hospital from hell, doctors' waiting rooms, finding a good phlebotomist, losing too much weight and having no butt, and having to poop a lot.
send your suggestions!
carlau AT mindspring.com

there is only one disease

I'm reading a really mind-blowing book called "Never Be Sick Again."
It somehow manages to confirm everything I ever suspected about the origins of disease, the shortfall of modern medicine, the destructiveness of the American lifestyle, and the resilience of the human body, as well as the possibilities of becoming completely well, despite what we've been told about chronic illness.
Unfortunately, it's going to involve giving up junk food and eating a lot of vegetables. I'm already doing that, but it's going to involve even more changes than I've already made. I already knew that sugar, nutrasweet (and other artificial sweeteners), dairy, white flour (and for me, all wheat), meat were off the list for me and for the most part I've made peace with all that.
But rice cakes? wow, it never even occurred to me that rice cakes were unhealthy. Oh well.

But back to the bottom line of this book: there is only one disease, and that disease is (drumroll); cellular malfunction.
And there are only 2 causes of this one disease: nutritional deficiency and toxicity.
There are 6 pathways back to health: nutrition, toxicity (lack thereof), psychological (a powerful one), physical, genetic (advice here is mostly to avoid harming your DNA), medical (the advice on this one being avoid medical intervention as much as possible).

We blame so much on genetics. But we are not pre-programmed to self-destruct. The good news is (now that we've heard the bad news: most of what we eat and love is bad for us, much of it having a net negative nutritional effect on our cells)--- we can make changes and positively, even drastically affect our health and no longer live in fear of getting sick and old and incapacitated and dependent on others, including a heartless soulless medical system that inflicts as much harm as it does help. OK I may be adding a little of my own opinion in here along with the synopsis, but not much...

There is so much confusing information out there about health and diet. This one book cuts through all the BS. It is incredible to hear about the isolated cultures who are free from processed foods and are so healthy they live to 120 and beyond, doing vigorous folk dances and fathering children to the day they die, which happens peacefully in their sleep. They are so healthy they don't even have words for things like dementia. They don't even get colds. Until the paved roads come in, and along with them the processed foods.

In general, when he's asked to give advice for one dietary change, he tells most people to cut out dairy. I mean really, what other species would walk up to another animal of a completely different species and start drinking its milk? Cows are kinda gross when you think about it. And for those of us with autoimmune issues, cutting out all gluten products. We've heard that one before, haven't we? I've been gluten free for a year and a half, off the diet soda for 2 years and 95% meat and dairy free for about 6 months. I am mostly sugar-free as well. It does help. I've even dropped a size in clothing. I refuse to step on the scale, because I don't want to make this about weight and vanity; this is about health and a permanent lifestyle change, the pursuit of health, vitality, freedom, reaching my true potential, being energized, feeling great. Looking great is an awesome bonus.

The subtitle is Health is a Choice. Learn How to Choose It.

Empowering. Promising. I'm about halfway through, still reading, but I'm sold on this one.

massively humerus

OK well after all this wondering what all my shoulder pain is about, we have something of an answer. We've all been guessing at what it might be. If you're looking for a frozen shoulder to cry on, you'll have to look somewhere else. My shoulder is not frozen. i have a mass on my arm. The humerus, to be exact. The funny bone. the one that runs from your elbow to your shoulder. The only funny thing about this is what runs through the mind when you finally get a diagnosis for something you've been suffering with for years: "a HA! it's real! i told you so! Oh crap! it's real! is it going to kill me?"

A mass. that sounds so... massive. What does it mean? a mass of what? So of course I can't get any kind of game plan or more specific diagnosis until I go to an orthopedic guy/ gal. Sign. I hate limbo. I don't even like to do the limbo. But I can't go to the doctor anytime in the next couple days. I do guitar lessons and performances. I can't just cancel those unless i'm nearly dead. So I have to just get through the next few days then see if I can get into the specialist.

First the MRI. Then the XRays. Backwards, I know. Next I may have to get a catscan. What's the difference between a catscan and an MRI? Is the clanking sound more annoying? My right arm is getting so many pictures of it, it's starting to feel like Lindsay Lohan. If I don't look out it's going to start running around drunk to dance clubs with no panties on and buying designer clothes. And my left arm is getting a complex. "Hey I'm cute! Someone take a picture of me! How come the bad arm gets all the attention?"

I'm so tired of doctor appointments. where's my *&^* lollipop?

My theory is that it's arthritis caused by guitar playing. Or too many wise cracks, trying too hard to be massively humerus.

update: June 4. Geez it's a whole month later and all I've managed to do is get to the orthopedic guy (who was a jerk) and all I got from him is it's a tumor. Now I gotta go to an orthopedic oncologist. And maybe get some radioactive crap shot into me for yet another test. And/ or biopsy. Meanwhile thanks to acupuncture and massage, I am no longer in any pain. I still have yet to get my lollipop though.

not enough germs

So there's this new theory floating around amongst microbiologists about the cause of autoimmune disease (and allergies): we are overly hygienic. We're too clean. We don't have enough germs and parasites living in our body, so we are out of balance. It's an interesting theory, and I will certainly entertain the idea (although I'm not about to swallow a pound of tapeworms).

The part I disagree with is *why* we have an imbalance. Autoimmune diseases are most rampant in "developed" (a.k.a industrialized, or Westernized) countries. The microbiologists posit that what those countries all have in common is lots of hand washing, caution about germs,etc. and they think that's the issue: Kids don't play in the dirt enough, we wash our hands too often, etc.

Let me just say- I ate plenty of dirt as a kid. I played in a sandbox (where the cat sometimes pooped). We had recess at school twice a day, and no one washed their hands after. We shared a water fountain through my senior year. As soon as we got home, our parents sent us outside to play. I went to summer camp where we used a latrine. I am sure I ran into *plenty* of germs. And my mom was not hysterical about wiping them off me. And yet, I've still got not one, but 4 autoimmune conditions.

However, I will still entertain the idea that I don't have enough parasites, or microorganisms in my system because I also had *plenty* of exposure to antibiotics. And that is what I think is causing the imbalance, not soap.

Sadly, doctors were, at least in 1992, when i first got sick with lupus (but didn't yet have a diagnosis), indiscriminately giving out antibiotics, and i had 4 rounds of them in a row while they were trying to figure out what was wrong with me- and every single batch of them made me sicker. Full body rashes, vomiting, and escalation of the lupus.

I've taken them for bronchitis a bunch of times, I took them when I got my wisdom teeth cut out. I think it's pretty safe to say I've taken antibiotics between 12 and 20 times in my life, and I'm probably not unusual in that respect.

So if you're looking for a culprit, look past the bar of soap, which I will continue to use (though not antibacterial soap, just plain old normal burt's bees chemical-free soap- because I don't want e coli, thanks!), and look in the medicine cabinet.

Yes, antibiotics save lives, but there's such a thing as too much of a good thing.
Now, tell us how to rebalance our systems. will probiotics do the trick, or do we need something more gross?
Can I just go back to the playground?

PS would someone please study the connection between allergies and autoimmunity? Please?