13 Diseases that are Difficult to diagnose

Here we go again. Those of us with lupus are on another list of "diseases that are hard to diagnose."

Check it out:
http://www.insurancequotes.org/13-most-difficult-diseases-to-diagnose

The list includes:
- ALS (Lou Gherig's)
- Fibromyalgia
- Lupus
- Crohn's
- Cushing's Disease (which is basically the same effect as being on a lot of prednisone, only your body is creating the cortisol)
- Celiac Disease
- Chronic Fatigue
- Lyme Disease
- Parkinson's
- depression and bipolar disorder
- hypothyroidism
- MS
- Mesothelioma


IMO, this article, while interesting and a good jumping off point for debate, is full of excuses.
Patients are needlessly suffering untreated for years on end not because these diseases are hard to diagnose but because our system and its priorities are seriously messed up.

And now, my 9 *real* reasons these 13 diseases are hard to diagnose:

1- Assumptions. Doctors don't take patients' concerns seriously and assume they are "just depressed," so it takes several visits before they even start looking for an actual physical problem. This is markedly worse when the patient is female. If you aren't bleeding profusely, you're probably imagining your problems and you just want attention (oh yeah the doctor's office is where I go when I want attention. HA!)

2- Ridiculously short time with patients. The cost of overhead (rent, office staff, etc.) is so high and insurance companies put the squeeze so hard on doctors by discounting allowable payouts, that if doctors spend more than 8 minutes with a patient, the doctor is losing money.

3- Priorities are upside-down. Doctors do not realize or believe they are in the business of customer service, and that without patients, they have no medical practice. And yet, when we go into their offices, we are last priority. After the office staff, the insurance company, the pharmacist, the lab techs, the drug reps and the pizza delivery guy have all been taken care of... OK, now we can see you, Mrs. Jones. Oh she left? Well there's more where she came from. She's probably a hypochondriac anyhow.

4- Patriarchal CEO attitude. Most American doctors want to operate in a top-down, giving orders kind of manner, rather than a cooperative partnership with patients, even though the patients may have more knowledge than the doctor on their own condition. Some doctors are threatened by empowered knowledgeable patients and get angry when we go looking for answers in chat groups and on Web MD. I had a doctor fire me as a patient because she didn't like me "challenging her authority" by bringing in articles and asking questions. And she mocked me for trying alternative medicine. Many don't want to listen to us when we ask for specific tests or for them to consider we might have a certain disease. Look I've got all day to check it out and my life depends on it, so let me be involved!

5- Poor listening. American doctors (as a group, with some exceptions, but as a group) have terrible listening skills. How can you figure out what is wrong with me if you won't listen? I had doctors tell me I had bronchitis- and I wasn't coughing! I had no phlegm! I've had bronchitis at least a dozen times, and this was not bronchitis. But they wouldn't listen. Then they gave me antibiotics which made me even sicker.

6- Gadget-happy. American doctors rely so much on technology and fancy tests that they have lost touch with their intuition. They have a reputation among the international community of being test-happy and making every event far more expensive than necessary.

7- For-profit health care. As long as making a buck off people's suffering is the number one priority- and it is for big pharma, insurance companies, and even hospitals- the priorities are going to be screwed up.  The kindest doctors in the world can only operate so effectively inside this system. If they want to be free of the demands of these hungry hungry hippos, they have to operate a cash-only, no insurance, no office staff (no overhead) practice. And then they can spend all the time they like with patients, relax, and let it be all about the patient's suffering and how they can ease or end it.

8- It's never lupus. Thanks a lot House, MD, for your one-man led anti-awareness campaign.

9- Reluctance to diagnose. doctors don't *want* to diagnose these diseases. Lately it seems to be harder and harder to get and to hang onto a lupus diagnosis. I can't speak to whether that is the case with MS or ALS or Parkinson's, but from what I'm hearing from other lupus patients, doctors seem to be going out of their way to avoid diagnosing people with lupus, and even trying to un-diagnose people with lupus who have been living with it for years. It used to be simple- if you have 4 of the 11 classic symptoms, you were diagnosed with lupus. Now it seems they want you to have all 11 plus certain blood tests (ANA, anti-DNA, C-reactive protein, etc.). It's like they've run out of room so they had to raise the standards. Like when a university has too many qualified applicants, so they raise the minimum SAT score.

I don't know if the government is pressuring doctors to avoid the lupus diagnosis so they don't have to give disability status, or if the CDC doesn't like the statistical trend of exploding rate of autoimmunity, so instead of making people healthier they tweak the numbers by refusing to diagnose... Call me a conspiracy theorist, but there's something weird and fishy going on here when the same symptoms that would have got you diagnosed 20 years ago are no longer sufficient for definitive diagnosis. I'd really like to know what's going on behind closed doors on this one.


And those, my friends, are my 9 reasons which these 13 (and many other) diseases are supposedly hard to diagnose.

Carla Ulbrich
The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
get the book! http://tinyurl.com/348hroc

The Straight Poop

OK, people, it's time to give you the straight poop. Well, actually it's more likely shaped like a question mark. Yesterday, I ate so many carrots, including a glass of carrot juice that today my poop was orange. Upon sharing this, I heard back from my friends who eat lots of spinach and get green poop, and those who eat loads of beets and have fushia poop. Who says poop has to be brown? Poop the rainbow my friends!

The great thing about eating something brightly colored, then seeing it in your poop, is that you now know how long it takes food to pass through your digestive system. If you've ever changed diapers, you know that just a few hours after feeding the baby peas, you get green poop. Healthy babies digest very quickly.

The fact is, as we get older, most of us here in the US don't poop enough, and we don't look at our poop, and neither do our doctors. But poop and poop habits (or lack thereof) can tell you a lot about a person's health. So let's talk poop.

According to Dr. Oz, who talks about poop a LOT on his show, "You should see a doctor if you poop more than four times a day or if you don’t go to the bathroom at least every other day.   To help cure constipation eat things like fiber, probiotics (yogurt, kefir) and drink lots of water.  You should also read Dr Oz’s segment on Constipation Causes, because there are other things that can constipate you, even if you drink lots of water and eat plenty of fiber.  Also, overuse of laxatives can cause constipation."

Know what else causes constipation? Narcotics.Yes, voice of experience here.

Know what can cause the other extreme, over-pooping? Celiac disease, IBS, Crohn's, and food sensitivities, such as gluten intolerance or lactose intolerance (anyone here watch the Big Bang Theory where Leonard always has a poopfest if he eats dairy? New meaning to "big bang"...). And in my experience, overconsumption of caffeine. Pooparama!

Speaking of Dr. Oz and his frequent poop-themed segments, I thought bodily functions were not allowed on network TV... unless, I guess, you have a white lab coat on. hmm, maybe if I sing my poop songs in a white lab coat, I can get onto more radio stations. Wait... you can't see my clothes on the radio...

Well, this is internet, and for now it's uncensored, so please enjoy today's theme song, The Colon. Keep eating healthy fiber, drinking plenty of water, and enjoying your quality time in the small room with one seat (hopefully only one seat).

Happy healthy pooping to you all!
And in the spirit of Triumph the Insult Dog, this was a great blog topic....
for me to POOP ON!



Carla Ulbrich
The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
http://tinyurl.com/348hroc

Fat, Sick, and Nearly Dead

Fat, Sick and Nearly Dead! I can relate to that. Except I was super-skinny, sick and nearly dead. Then I went on prednisone and that fixed the skinny part quick!(Thankfully I've been off it now for 4 years).

Fat, Sick and Nearly Dead is a great new documentary about Joe Cross, who was 100 pounds overweight and suffering from a painful autoimmune disease. And also on prednisone. I just got back from a viewing of the movie at Whole Foods, where Joe himself was on hand to answer questions and lead discussion.

In my house, spoiling movies by telling too much about what happens is a big no-no, punishable by the other person getting to choose the next 6 movies.  But I can tell you what's on the movie's website, which is that he decides to go on a 60-day juice fast and travel across the US, talking to people along the way about food, lifestyle choices, and juicing. Then he meets a guy at a truck stop who has the same exact rare autoimmune disease. It's a great story.

Joe is spreading the message about the incredible healing power of fruits and vegetables, and also of fasting (juice fasting that is). He is changing hearts and lives. He's an inspiration. He's also Australian. And.. tall. (well, I'm only 5'2"). Post-movie at the Whole Foods in Princeton, NJ:

The movie is inspiring, eye-opening, and at times, humorous and light-hearted. He doesn't preach. He just leads by example.

You can buy the DVD at his website, or watch it on netflix (available at netflix via streaming only at present). http://www.fatsickandnearlydead.com/reviews/

Cheers!

Carla
Carla Ulbrich, The Singing Patient
www.thesingingpatient.com
Author of "How Can You NOT Laugh at a Time Like This?"
http://tinyurl.com/348hroc

Primary Food

Do you ever wonder why some people can just eat junk food and sugar, and smoke cigars, and still be healthy? It hardly seems fair. And then you meet some people who are super-careful with everything they eat and they seem so miserable and look pale and weak.

Often when we see something like this we chalk it up to genetics or good luck, but there is one factor that can’t be overlooked, and that factor is referred to by Joshua Rosenthal (head of the school Institute for Integrative Nutrition) as Primary Food.

Primary food... what does that mean? It means your work, your relationships, the fun you have, how meaningful your life is in general, and how much you are enjoying it.

It seems that how happy you are with your life may be even more important than what you put in your mouth, as far as determining how healthy you are.

Think about it... the times you’ve been in love, or consumed by joyful work, such as making music, or doing art, or anything creative- you forgot all about food, didn’t you? And yet you felt great.

My acupuncturist once said to me that you send little “live” and “die” messages from your brain to your body all day long. So it’s really important that you have something to live for. Not just something to *not die* for (people need me at work and at home) but something to *live* for (I can’t wait to start on that project, or go camping with my kids, etc.).

So that, my friends is why I’ve been absent from the blogosphere for the last 3 weeks. I decided to fill up on some primary food, because my life was getting out of balance. Too much grunt work at the computer (zillions of e mails, networking, book promo, etc.) and not enough joy.

I decided to go back to this awesome music camp in New Mexico where I taught during the summer 1999-2004 and have myself a week of fun, sun, mountains, stars, great kids, awesome fellowship with other teachers and music, music, music. I’m pooped, my clothes are covered in camp dust, and I had a blast. I feel full.

So... primary food! What brings you joy? Who are the meaningful relationships in your life, and are you getting enough time with those people? Can you schedule more Vitamin F (fun) into your week? Tell me about your primary food-  who in your life fills you up, what you like to do that makes you feel alive and happy to the core, and so on.

Having Fun with Wigs (guest blogger)

Today we have a guest blogger, with a post about wigs. Some helpful hints and resources here. I have lost my hair in varying degrees 3 times now because of lupus and prednisone combined. Both the disease and prednisone cause hair loss. 

The first time I lost my hair, I just wore hats everywhere and tried (unsuccessfully) to hide from friends and family with cameras. In 2002, thanks entirely to one of my sweetest girliest friends, I got and wore a wig. I spent $40 on it, and it was worth every dime and more. I felt so much better about going out, and going out and seeing friends was really therapeutic for me. 

Though I’m pleased to have my full head of hair again- so full in fact, I don’t think I could cram it all under a wig… I’m now a fan of wigs, when the situation calls for it. As always, I welcome your thoughts and comments and experiences in the comment section.

Now here’s our guest blog:

Having Fun with Wigs

Lupus is a chronic autoimmune disorder in which the body's immune system attacks its own healthy cells. This disease can lead to several complications, including (but not limited to) joint pain, swelling and sometimes even alopecia (hair loss).

As many medical professionals, such as those in medical billing and coding, know, hair loss can be debilitating to one's self esteem, often leading to dissatisfaction with one's own appearance. However, an extremely viable and often overlooked solution to hair loss is the use of a wig. If worn appropriately, a wig can look like an authentic head of hair, and oftentimes wearing wigs is an easy, hassle-free way of changing one's hairstyle frequently with little time or effort. Once a person grows accustomed to the idea, wearing a wig can become a successful and enjoyable experience.

Finding a Wig Store:

The first step in obtaining a wig is knowing where to go. A plethora of wig Web sites (such as Wilshire Wigs, wigs.com, Wig Warehouse) are available with just the click of a button, offering a wide selection of wigs. Visiting a local wig store, which can easily be found through the phone book or a Google search, allows customers to buy a wig in person.

Choosing a Wig:

Next in the process of obtaining a wig, consider factors such as face shape, skin color, hairstyle preferences. Visiting a brick-and-mortar wig store allows a person to get live help, and perhaps to try on wigs before purchasing them. Comparatively, online wig stores often offer informational tutorials about what types of wigs fit certain types of faces, allowing a person to peruse the selection in the privacy of their own home. Either way, many resources have been made available to clients to help with choosing the right wig.

Wig Cost:

Some wigs can be quite expensive, sometimes costing hundreds of dollars. For the thriftier customer, visiting wig outlet stores or purchasing clearance wigs may be a better option. These are often listed in the "outlet" or "clearance" sections of online wig stores, and sell for as little as $15! Another advantage of buying affordable wigs is that it provides one with the opportunity to buy multiple wigs, such that one's hairstyle can easily be changed at will.

Getting Your Health Insurance to Reimburse You for Your Wig Purchase:

People suffering from lupus-induced alopecia (hair loss) may be eligible for reimbursement by their health insurance company for wigs purchased after their diagnosis (click here to learn more). Research your health insurance company's list of "covered expenses;" there should be a section dedicated to prostheses and prosthetic devices.

Some tips when applying for insurance reimbursement:

- refer to the wig as a "cranial hair prosthesis." It is crucial to avoid the use of the word "wig" when filing a claim for reimbursement, in order to ensure that it is taken seriously and accepted.

- have your physician sign your completed insurance form and fill out a "prescription" for a cranial hair prosthesis, detailing the source of alopecia and accentuating the fact that the purchase of this "device" was for emotional well-being, not for cosmetic purposes.

-Insurance reimbursement policies may vary from state to state, so it is important to be aware of what the policy is for your area before claiming reimbursement. One can also find more information by contacting your insurance company or visiting the company’s Web site.

Some final thoughts:

Once the technicalities of buying a wig are taken care of, the process of choosing and shopping around for a wig, and then wearing it, can be quite enjoyable. One good thing about wigs is that a person need not concern themselves with their own hair. No longer will a person be subject to lamenting their hair's natural grease or frizz or flatness.

If a person wearing a wig is dissatisfied with their hair, the solution is quite simple: remove the wig. This allows one the opportunity to be much more adventurous with their hairstyles than before. A person can try out bangs, short hair, long hair, braids, anything, without the long-term commitment that one would have to suffer if it were their actual hair. Multicolored wigs or wigs with unusual colors (such as fiery red, neon pink or lime green) can be tried out at will, worn to costume parties, dance clubs or even on a day in the park with friends, just for fun. 

Although lupus and alopecia initially induce feelings of dread, sadness and perhaps insecurity, a dreary situation can be turned around by changing one's outlook on their own situation. A loss of one's own hair may invoke feelings of discomfort in one's own skin, but a person also loses the responsibilities and insecurities that result from having a head of hair. One now has the luxury of reinventing their appearance in literally any way they please, and the possibilities are endless!

- Patricia Walling is a web content designer for several health care

related sites. She self-identifies as a perpetual student of medicine,

and can be found most of the time researching anything related to the

field. She lives in Washington, and as a result of the long winter

there is itching for the sun to return so she can run outside and

play