Wednesday, May 5, 2010

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.

Friday, April 16, 2010

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?

Wednesday, April 14, 2010

Psychosomatic, Real, or both?

well, here's a loaded topic. Psychosomatic illness.
It's amazing to me that emotional problems can cause physical ailments. Frankly, I don't think we've studied this enough.
I was listening to the radio on the way home from work today, something I rarely do, so I think perhaps I was supposed to be listening. You know, divine guidance.

The program was "The World, " a news show on NPR featuring international news, and they were discussing the health problems plaguing the people of Haiti. Now that the initial wave of injuries caused directly by the earthquake has subsided, the hospitals are seeing large numbers of people with unexplainable conditions- things with no discernible physical cause, like itching, and even a woman with partial paralysis. The doctors are saying on this program that many of these people are suffering from psychosomatic illness- physical problems caused by unexpressed emotions.

No patient wants to hear that they are causing their own illness, or that they are imagining their symptoms, or that it's all in their head, or even that it's psychosomatic, so this is a delicate issue. How do you treat someone who is suffering from physical symptoms, when you the doctor know that the root cause is emotional trauma? They are saying these people need talk therapy, but I'm saying initially, how do you even get them to agree to that if you don't first agree with them that their physical pain is real? In my mind, this is the perfect place to use a placebo. If the power of the mind is causing their problems, let the power of the mind also help them get better- distract them, and then also strongly urge them to get talk therapy so they can get at the root of their problem.

Now, once you've opened this Pandora's box, you really have to ask- doesn't nearly every ailment have an emotional component to it? 18 years ago, after watching one of my friends refuse to grieve, then die of a tumor wrapped around his heart, I realized even cancer can be psychosomatic. Doesn't mean it wasn't real. It as so real it freaking killed him. But what I mean by psychosomatic is emotionally-related. Whoever said emotions won't kill you... I disagree. maybe not this second, but they can eventually kill you.

So, after having very real symptoms that can be measured by blood tests, MRIs, and all that, and getting diagnosed with 4 different autoimmune diseases, and nearly dying of kidney failure three times now, I feel like, OK, they know it's not in my head. But what *is* in my head?

I'm really at this point willing to entertain that some or even possibly all the root of my autoimmune problem is between my ears, that my mind is powerful enough to create kidney failure, anemia, joint pain, fever, you name it. Because if I can create it, then I can STOP creating it. So I'm totally willing to explore the idea that maybe it *is* psychosomatic. And what I mean by that, again, is not that I'm imagining it, but that maybe i'm creating illness, or creating an environment in which illness can take over, by the thought patterns and emotions that I allow to habitually occupy my being.

Feelings are real. Feelings are powerful. Feelings can be destructive. They can also be healing and creative.

I recently got involved in co-counseling, a somewhat obscure movement wherein people counsel each other as peers. There are guidelines and workshops, its' not a free-for-all, and generally it's anonymous; you don't socialize with the people you see in these groups. The idea is to release your pent-up feelings and to break old patterns of feeling, thinking, and behaving.

I heard about this movement via an obscure self-published book called "healing lupus" by waverly evans. She claims to be completely cured of lupus through co-counseling, since 1978. that's a pretty long time to be symptom-free, and she was *really* sick. Same disease as me, just as sick, now symptom-free. Frankly, I think I'd be pretty foolish to not look into what she did and give it a try. So I'm doing it, once a week, and I feel really good about it so far. And the weekly groups cost nothing. My favorite price. It also goes by the name reevaluation counseling, in case you want to google and look for a group in your area.

OK, friends, time to sign off for now. I'm still struggling with insomnia, and have now watched every single episode of Law and Order: Criminal intent, seasons 1-7 via netflix. there aren't any more L&O episodes of any kind available for instant play on netflix, so now I'm watching... Columbo.

Thanks for reading. Hope you enjoyed this controversial topic! Chime in!

Monday, March 29, 2010

raw paleo diet cures lupus? discuss!

http://www.myhealthblog.org/2010/03/26/lupus-treatment-success-rate-100-via-paleo-diet-in-france/

This guy says we should all be eating all raw, including raw meat (ew!)
I totally agree that diet has an incredible impact on health, and that we should avoid dairy and processed food.
I've even heard you should avoid the nightshade family of food (tomatoes, potatoes, peppers, eggplants), and i don't eat these foods much at all. They all give me heartburn anyway.
After I learned what margarine was made for- to fatten up turkeys- I gave that up as well. Anything buttery that won't melt? gross.
Eating loads of fresh veggies and fruit? I think everyone agrees with this, even our government, and they're not exactly cutting edge with nutrition.
I'm not so sure i'm ready to give up rice or nuts and seeds, but I will entertain the idea.

And this I know: I darn sure am not eating raw meat.
That just doesn't make sense to me, because I read elsewhere that 100% of lupus patients have low stomach acid. How are we supposed to digest it? And secondly, raw meat is filled with pathogens, and we have suppressed immunity; how are we supposed to fight off things like salmonella- and worms? ew, ew, EW!!!

All the same I am pleased to see someone doing some research on the impact of diet on lupus, because it is something we can control it's not drugs, and it is an affordable cure.
As for my feelings on raw meat?
Well, feel free to disagree.
In fact, discuss.

note: rebuttal article:
http://www.scientificamerican.com/article.cfm?id=evolving-bigger-brains-th

Well wishes to you all-
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
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http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Thursday, March 25, 2010

why i refuse to step on the scale

OK, seriously?
There's now a $160 scale that will tweet your weight. Meaning, you step on the scale and it posts your weight on twitter.com for the whole world to see.

No way am I stepping on that scale, or any other scale. Because stepping on the scale and looking at the number, not to mention broadcasting that number, sets off a cycle of obsession and compulsion in me that I can't control. Being female, and American, I am, as required, obsessed with my weight and size. And, as required, I judge and value myself by how big or small I am and how good or bad I look.

The messed up thing is when you're dealing with a chronic illness, you often don't have control over your looks or your size. So now on top of judging yourself for your inability to work full-time, or to do basic things like keep your house clean, or enjoy simple things like going to parties or taking a nice long walk, I get the added bonus of judging myself for how I look and what I weigh when the illness and drugs have drained the color out of my face, made my hair fall out, given me a rash and zits, and made me puff up like a balloon with water retention.

So, no, I'm not getting on the scale. Because somehow, I can magically eat nothing and gain 5 pounds.

Everyone says, when they decide to lose weight (and let's talk about that terminology, shall we? How can "losing" something be good? Let's call it "decluttering." I'm going to declutter my thighs!... ) What was I saying? Oh yes, everyone says they're losing weight for their health. If you're really losing weight for your health, then you should be looking for permanent changes to your diet. What we often see, thanks in part to shows lie the biggest loser, celebrity fit club, bride boot camp, etc., is people making radical changes, eating food they don't like, feeling deprived and hungry for the entire time, doing workouts they despise and ultimately looking forward to the day they can go back to sitting in the la-z-boy eating whatever they like. That is not helping your health. It's not just being overweight that is tough on your body. Losing weight is tough on your system- all that fat getting jogged loose, running through your veins and kidneys- and gaining weight is also hard on your body. In fact, that's what kills most anorexics- their heart fails as they put the weight back *on*. Same with those who have been in concentration camps; they have to be eased back into eating full meals. So, we can't just jerk our bodies around, living irresponsibly most of the time then going on extreme diets here and there to "atone." We have to find something we can live with, period.

In high school, I counted calories. I didn't need to. I was a size 5. I marched witha tuba and did aerobics records- for fun. In college, I gained about 10 pounds, so I went on a slim-fast diet. 2 shakes and 1 meal a day. a couple years later, the same 10 pounds (I guess technically it was a new 10 pounds, built from a new set of calories, but on the scale it was the same number), I went on weight watchers. I was always hungry, but it worked. Once I developed lupus, all bets were off. I lost weight for no reason, without trying, and at first I didn't mind. I'd never been too thin before. Then again, I'd never had kidney failure before, and i'd never been too weak to get out of a chair on my own. Then I went on prednisone and gained 40 pounds in teh first month. Talk about demoralizing! Obviously we all know fat does not equal health. But clearly, thin does not necessarily equal health either. (Do I need to repeat that?) So what equals health? It's not a number, and that is why I am not using the scale.

Health equals vitality. Health equals joy, energy, being able to pursue your dreams, wholeness, wellness, peace, well-being.

According to the world health organization:
"Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."
See, not even a single mention of weight.

Since developing the illness, the scale does not correctly reflect whether or not I've eaten properly. It doesn't factor in my water retention from kidney issues or drug side effects. it doesn't play by the rules. It doesn't tell the whole story. And it sets off my neuroses, and makes me want to starve myself and do intense exercise, both of which will only make me worse off than if i'd never stepped onto the scale. (Is it any coincidence that the US population has scales everywhere you look and probably more fat people than any other country? I don't think all those scales are helping!)

I do not measure my well-being by a scale.

Does this mean I just gave up and decided to be fat? Hell no! I've just decided this is not a tool that is helpful for me, because my weight fluctuates wildly during the week (well to me 3-5 pounds when you're 5 ' 2" is wildly), and it is more discouraging than helpful.

Instead, I have committed to lifestyle changes that I am working to make both permanent and pleasant. I trust myself enough now not to binge on foods that I shouldn't be eating. I eat what I should be eating to nourish myself- a vegan diet (no wheat, dairy, sugar, meat), and that number will take care of itself, as will all my other numbers. I get blood tests. I go to both the MD and the acupuncturist. If I'm getting worse, they will notice. But I'm not. I'm getting better, and everyone is noticing. I really am doing this for my health.

Since giving up the scale and going vegan, I've tightened my belt 2 notches. Weight loss- excuse me, de-cluttering- is just a bonus, because what i really want is to feel great, to be well, to have energy, and to enjoy healthy food, to find healthy food that I can eat and enjoy for the rest of my life. And there, I've made great strides.

So, no thanks, I'll pass on the fancy scale, and on reading people's weight tweets. Until they come up with a scale that measures my spiritual well-being, I'm way more interested in reading tweets about making tofu tasty.