Thursday, June 27, 2013

Does Diagnosis Even Matter If the Treatment Is the Same?

I was test for auto immune and told "probably lupus." I had a skin biopsy which stated "could be lupus." My rheumy does not think it matterswhat the diagnosis is because the treatment is same whether it's lupus or MCTD.

I have or had over the past 30 year all or almost all of the criteria on the lupus list. My problem is that they have not happened altogether at once.

Also, about the kidney: a few times my urine was coke color, but it was never collected at the time. Never know when it will happen.

Is my doctor right that it does not matter what the label of the disease, or should I be told?
Thank you.


Thanks for writing in.

I believe it's important to keep a symptom diary so doctors can have the most data to work with.
That is my first suggestion. Start keeping track of your daily symptoms. Also go back and reconstruct as much as you can, when you think this started, what your first symptoms were, and all symptoms with dates as well as you can remember.

It took me 2 years to get diagnosed with lupus, because I kept going in with different symptoms each time, and was so exhausted I couldn't remember all the other symptoms I'd had recently. No one suggested I keep a symptom log. I think it's important to have as much data as possible when you've got autoimmune stuff going on.

If you have odd-colored urine, maybe go into an urgent care center (they are fast and do walk-in appointments and sometimes have a lab on site). Ask for a urine test, telling them your concern about the odd-colored urine. It could be blood.

I think having a specific, definite diagnosis is helpful because
1) it makes it so much easier to go find books and support groups and read up on all your options.

2) Yes the treatment is basically the same for most autoimmune diseases. In mainstream medicine: immune suppressants. In alternative medicine: build up your health through nutrition, rest, and sometimes alternative therapies like acupuncture or reiki, etc. But there are some things that are specifically bad for certain diseases, so I think specific diagnosis is important.

You might like this article by Dr. Mark Hyman on autoimmune diseases: "how to stop attacking yourself"

Your doctor has to put some kind of diagnosis code on his forms, so he could at least let you in on what he's writing on the forms. I would ask "What diagnosis are you writing down? Why did you choose that one?"

The odd colored urine is important to report.
Lupus can definitely go after your kidneys. You should be able to find out your kidney function without a biopsy. Pee in a cup, collect in a jug for 24 hours, get blood tests. I've had 2 kidney biopsies- they were a royal pain, they are not entirely safe (you have major blood vessels in your kidneys and could end up bleeding internally or getting infected) and we learned nothing from the ordeal. So I say, collect pee and blood to see if your kidneys are OK.

I know from the people who write to me that doctors for some reason are more hesitant to give out a lupus diagnosis. In fact I wrote a blog post about this- it's my most popular blog post, if that gives you any idea what a problem it is to get diagnosed with lupus these days.

I would just ask him to tell me what he's writing on your lab forms as the diagnosis code. You have a right to know.

Hope this is helpful. Wishing you all the best

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"

Monday, June 24, 2013

Disability Discrimination?

I saw this short film (below, 7 minutes) at the Arts and health Alliance of NJ meeting, and wanted to share it. It's called "Anything You Can Do."

It made reflect on both how I have discriminated or ignored people in wheelchairs, and also some of the stares and weird treatment and inappropriate comments I got when I was very ill (in the airport getting wheeled around and some kid goes "I wish I could get a ride." When I was still experiencing kidney failure and congestive heart failure and anemic, getting out of my van at the drugstore and a cop accosting me for using the handicapped space. Someone saying to me "I wish I could just lay in the bed and read.")

Sometimes people see the error of their ways. Once I was riding in the airport motorized cart, and this middle-aged couple saw me on there, so they asked the guy to stop because they were tired. I guess they saw a young person on the cart ("you don't look sick") and figured, "hey if she can get a ride, they must be giving them out to anyone.") When I struggled to get down from the cart, and pulled out my cane to steady myself, I could feel them recoiling. Because they had assumed one thing then quickly realized they were wrong. Of course, I got better. There are many people who never become fully ambulatory again.

One of the ways physically handicapped people are discriminated against/ left out is just by oversight. Sure, a lot of places (not all places!) have ramps now for wheelchair access, but where do those people sit once they are inside- like if it's a theatre? What about people who need walkers? One theater in West Orange, NJ, just renovated its Maurice Levin Theatre to accommodate more special needs guests. They reduced the number of total seats so that they now have 14 wheelchair spaces with companion seating, and 42 seats with spaces for walkers in front of them.

Comedian and speaker Brett Leake ( ) has a wheelchair that morphs into standing position, so that he can look people in the eye and be part of the conversation. Otherwise, he's just looking at knees and crotches. That can only be fun for so long. I was once the short person at an outdoor all-day metalfest in July, at everyone's armpit level in the crush of people in front of the stage. It got old really fast.

Well, without further ado, here's the great little short film called "Anything You Can Do":

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?"

Monday, June 17, 2013

Kale! How to not hate it

It's the most nutritious food known to man.
But if you don't now how to prepare it, it's the also most repulsive food known to man.

Trust me, I know.
I'm a lousy cook.
I'm such a lousy cook even my trash can says "No really, I'm stuffed. I can't eat another bite. Try the garbage disposal. He looks hungry."

But, I got wind of how nutritious kale was, and I'm always looking for ways to naturally improve my health. So, I went and bought a big bunch of green curly-looking leaf kale at the grocery store.
And I cut it up, tossed it in a bowl, but some salad dressing and it was.... DISGUSTING!
I made myself eat it, but blech! Never again.

I told some friends about my awful kale debacle, and they said "Oh, you have to remove the stems."  OK, I can do that. "And then you have to massage the salad dressing into the kale leaves." Massage my food? Seriously? If I'm not getting a massage, you're darn tootin my food isn't getting a massage- especially when I'm still not really sure I'm going to enjoy the taste of it any more than the first time I ate it, without its "massage." So I didn't even try that, but I did have kale salad at Whole Foods, and realized, okay, if you put enough garlic on it, you can't taste the kale.

So I bought another bunch of kale. And decided to make kale chips. I watched a video on youtube. It looked so easy and sounded so tasty. Mine were... charcoal chips. Burnt.

OK, one more try. And this bunch had a recipe on it- on the tag hanging off the twist-tie.
I tried the recipe and... it was edible! I have since tweaked it, and now- dare I say it- it's practically delicious.

Here it is. Sorry it's not real specific about amounts, but
1) it depends on how much kale you're using and
2) that's just how I roll (might explain the lousy cook thing)

Rip kale leaves off stems (my dog loves kale stems, by the way).
Wash kale thoroughly.
Steam kale until it is bright green but not completely wilted.

stir in a bowl with:
- splash of olive oil
- teaspoon or 2 of fresh lemon juice (OK you can use bottled)
- couple forkfuls of minced garlic (I used the kind in a jar so it's not too strong)
- few dashes of salt
- sauteed onions (optional, but really turns it from just OK to actually tasty)

Serve alone as a side dish or on top of a tortilla with hummus on it.

Even my vegetable-phobe husband likes kale when it's cooked this way.

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer - Carla's book "How Can You NOT Laugh at a Time Like This?" funny medical songs