Saturday, December 17, 2011

How to destroy your finances in 5 easy steps

Hello friends!

Are you sick and tired of having a roof over your head?
Are you bored by the humdrum existence of knowing where your next meal will come from?
Are you completely numbed out by the dull, unchallenging routine of making ends meet?

It's time to shake things up! You, too, can experience the roller-coaster thrill ride of financial insecurity- but wait, don't order yet! You can also have unimaginable pain *AND* we'll throw in - for free!!! - the judgment, blame, and ostracizing by your friends, neighbors, fellow church-goers and (former) co-workers. 

Sound too good to be true? Think it's out of your reach? You can have all this and more with this easy 5-step plan. I'm not just the President of The Financial Ruin Academy; I'm an alumnus. I've done it. I know it works. And now I want to share it with you.
How to destroy your finances in 5 easy steps!
  1. Get a college degree
  2. Get a job
  3. Get sick with something serious and/ or chronic
  4. Get fired for being sick (this step is easy- no effort involved! Just drag your tired butt in to work one day and- "hey look, I don't work here anymore!")
  5. Attempt to pay for your medical bills and rack up debt (again, easy, because you won't have income but you will have usual expenses- plus these new exorbitant medical expenses. Don't worry; even if you have insurance you'll still find this step of racking up unbearable debt will take care of itself).
* Please note- this plan to financial ruin may not be as effective in Canada, or any country having universal health care.

Step 5 can be achieved via several methods, and some are more effective than others:

a) credit card debt
b) second mortgage on home
c) pile on student loans
d) personal loans from friends

If you really want to experience the financial ruin thrill-ride, option c is best. Here's why:

Credit card loans. If one day, you need to declare bankruptcy, credit card loans can be forgiven (student loans and mortgages cannot). Credit cards are unsecured debt. They have no recourse, except to ruin your credit score. And, hey, you can get that and more with the options b and c.

Second mortgage on home. These are easy to get, and if you default- boom! no house! Pretty fast road to financial ruin. And good luck finding another house, or even an apartment to rent. Now we're getting somewhere. But wait! I think we can do even better. See, if you get kicked out of your home and it's foreclosed upon, the debt is gone with it.

Student loan. Defaults cost you massive fees, which are then tacked onto the loan. And even if you go bankrupt, these loans are not forgiven. There is no getting out of these loans! So... if you want to have drama and financial ruin in your life for all time, you too can have the security of knowing you'll always have financial insecurity! You'll never be out from under your debt. If you want to stay on this thrilling ride, this is the way to go!

Personal loans can be forgiven (but rarely forgotten) and rarely involve fees or hefty interest.

So let's review: Credit card debt, if you go bankrupt, only costs you your pride. And let's face it, if you're chronically ill, you gave that up long ago. Mortgage defaults cost you your home; personal loans cost you your friends. So really, the coup de grace is to put that medical debt onto come loan you can never get out of- student loans. Now, on top of your debilitating illness, you have a debt load you cannot possibly repay, and which will never be forgiven.

If you've enjoyed this lesson and would like to enroll in our program of Financial Ruin for Life (TM), please send $1 billion to RDR,  PO Box 6284 Somerset NJ 08875. Please feel free to write the check from your student loan account.

**********
*this article as inspired by the unfortunate and true story of Kristin Rawls, a fellow graduate of The Financial Ruin Academy. read her story here (contains profanity): http://tinyurl.com/6p5gqjf

Carla Ulbrich, The Singing Patient


www.youtube.com/user/carlaulbrich- funny medical songs

Tuesday, December 13, 2011

Beating back the creeping crud

Well, it's that time of year. The central heat is on, the sinuses are getting dried out and irritated, the cold air is upon us, and the germs are moving in and taking up residence in those poor mucus membranes.

For the first time in years, I have bronchitis. And why do I think I got sick? Well for starters, just last Wednesday I was boasting about how I never even catch a cold anymore- not in several years. Never do that.

Seriously though, what causes people to fall ill with a cold, or bronchitis, or the flu- anything contagious is the combination of these 2 factors:

1) exposure
2) susceptibility

We can only control #1 to some degree. Unlike the Japanese, people in the US don't wear a face mask when they are ill. And we certainly don't stay home. We go to work and "power through," which sadly just makes the illness last longer. And spreads it to everyone around us. And if someone in your house is ill, it's pretty hard to not be exposed to it. And do you ever think about the fact that you've never seen anyone in a train station or an airport clean things like door knobs and chair handles, which are touched by hundreds of people daily? Yeah, we're going to get exposed to germs. And that's all part of keeping the immune system awake and useful.

But susceptibility, there's something we have some power over. Our daily habits make us weaker or stronger. What we eat, how much we sleep, whether we get enough water and fiber and vitamins, how happy we are, whether we get sufficient exercise.

I actually felt the sore throat coming on last week, but I "powered through" because I had things to do, such as rehearsing for several gigs this week. Now, sadly, I'm canceling those gigs because I'm SICK... because I didn't rest when I knew I should, and I went out in the cold, damp weather multiple times with a sore throat. Stupid. But I own up to my part in this- I've been overworking for 2 years now, hardly ever taking a day off, and that, my friends, was dumb. I made myself very susceptible. In fact I'm lucky it took this long for me to end up with bronchitis.

So, I'd like to share with you what I'm doing to kick it.
  1. Ear oil. Make your own ear oil: http://tinyurl.com/5cjbfo
  2. Umcka. homeopathic cold cure. i started it last week but forgot to take it Saturday because I was too busy" gigging. This stuff usually works really well for me- if I feel something coming on, I start taking it, and it never becomes a full-blown anything.
  3. echinacea
  4. vitamin C
  5. rest
  6. water
  7. raw garlic
  8. cold-eeze (zinc)

We'll see how fast I can lick this. Meanwhile, the most important lesson I take from this experience is this: If you have to pee, and you also have to blow your nose, pee first. Trust me on that one.

{12/16/11 update: it only took me 3 days to get back on my feet- shortest bout of bronchitis I've ever had! I don't know whether to thank the Umcka or the ear oil, but it's one or both of these, because the other things in my list have always been there before, and those bouts of bronchitis always lasted 10-14 days. I'm back! If I had to get "normal people" sick (as in "just" bronchitis), at least it didn't last- and it didn't make my lungs close up like it did 8 years ago. Onward! We now return you to our regular postings about gum, gluten, and other random topics.}

Carla Ulbrich, The Singing Patient

Friday, December 2, 2011

Gum

My gum-chewing days are essentially over. And while that will probably save me from getting TMJ, I do miss having something to chomp on in place of dessert, or while I'm concentrating on writing, literally chewing on an idea. And especially on an airplane, popping my ears.

But I chew gum no more, because I can't find gum that does not contain nutrasweet.

What's wrong with nutrasweet. Let me get the list. Literally.

According to http://www.ethicalinvesting.com/monsanto/aspartame.shtml ,
some of the symptoms of aspartame poisoning include:

    Headaches/Migraines, Dizziness, Seizures, Nausea, Numbness, Muscle spasms, Weight gain, Rashes, Depression, Fatigue, Irritability, Tachycardia, Insomnia, Vision Problems, Hearing Loss, Heart palpitations, Breathing difficulties, Anxiety attacks, Slurred Speech, Loss of taste, Tinnitus, Vertigo, Memory loss, Joint Pain. 
     Furthermore, it is implicated in worsening or even triggering these conditions:
    Brain tumors, Arthritis, Multiple sclerosis, Epilepsy, Chronic faigue syndrome, Parkinson's Disease, Alzheimer's Disease, Mental retardation, Lymphoma, Birth defects, Fibromyalgia, Diabetes, Thyroid Disorders.


Every single one of these contains nutrasweet. Well, OK, not the batteries.


Nutrasweet, which I used to parttake of daily (mostly in the form of Diet Coke, but also gum), is an excitotoxin, and anyone with autoimmune issues should avoid all excitotoxins. In fact, everyone should avoid them, but those of us with a diagnosis of something serious will be especially better off if we keep them out of our diet.

On the day we finally see a "wanted" poster in the post office for aspartame, underneath its photo will be these known aliases: Nutrasweet, Amino Sweet, Equal, Spoonful, and Sweet One. Like a wanted murderer, perhaps they are changing the name again to avoid the bad press that nutrasweet is getting. This "food" should never have been allowed into the food supply, but if you've got deep pockets and know the right people, I do believe you can get the FDA to approve cyanide as safe for infant formula.

Don't just take my word for it. Read some of the many articles on wellsphere.com about aspartame poisoning:
http://www.wellsphere.com/wellpage/aspartame-banned

Or read this webpage:
http://sweetpoison.com/

Or this one:
http://www.naturalnews.com/034320_aspartame_sweetener_side_effects.html

Don't count on the government to protect you from unsafe foods. Take on that responsibility yourself. And if you're looking for hidden nutrasweet in food, just know this- if the label says "attention phenylketonurics: contains phenylalanine" then it contains nutrasweet. And for me, that means it's not going in my mouth.

Nutrasweet for me means migraines and/ or diarrhea. Yeah, I just typed that publicly. I get diarrhea. TMI! Well, I don't, now. Because I don't poison myself anymore with soda and gum containing nutrasweet. I accidentally ate some nutrasweet recently when I bought some *regular* lifesavers (*not* sugarfree). I ate 3, then- 100-yard dash to the bathroom! WTH? The only unusual thing I had eaten that day was lifesavers. So, I went and read the package, and even though they were *not* sugar-free, they contained nutrasweet.

Why would they do that? Because nutrasweet is 16 times sweeter than sugar, and cheaper to manufacture. So, they can use less sugar and increase their profits.

Apparently, nutrasweet (aspartame) is also an effective preservative, which I assume is why they use it in that stuff they give people before a colonoscopy, and in prescriptions like cellcept. (Which may be why I couldn't tolerate high doses of cellcept. Boy was I mad when I read the pamphlet and saw nutrasweet in the ingredient list- I gave up Diet Coke, my favorite drink, and I also gave up chewing gum, because of the nutrasweet, and now my prescriptions were sneaking it into my system - and I didn't even get the enjoyment of a gut-rotting fizzy treat?).

 So, if you are avoiding nutrasweet, assume nothing and read all labels. Simply look for the warning (always in bold letters) "attention phenylketonurics: contains phenylalanine." If you're looking for a gum without nutrasweet, I'll save you some time: there isn't any. It ALL has nutrasweet in it, unless you go find some natural gum at the health food store (like "Glee" gum).

Looks innocent, right? Big Red! I chewed that as a kid, nothing but sugar and whatever gum is made of (rubber?).


Not health food by any stretch, but also not something that was going to cause migraines and diarrhea. (Oh, that's that word again. How many times can I put that disgusting thought into one article? Hopefully as many as it takes to  make nutrasweet seem like the non-food that it is).
And now, chew on this (actually, don't chew on this):

Always read the label!




Read the labels and if you're having health problems, consider eliminating this "food" from your diet.

Well wishes, my friends.

Carla Ubrich, The Singing Patient and Health Coach



www.bestpossibleme.com - health coaching- visit this site to get a free e book on nutrition!
www.youtube.com/user/carlaulbrich- funny medical songs




Tuesday, November 29, 2011

Inflammation

Inflammation. It is the hallmark of many diseases (perhaps *all* diseases), including lupus.

We have an epidemic of inflammation in this country, and it's killing us. There is a direct link between inflammation and obesity, inflammation and cancer, inflammation and diabetes, inflammation and lupus, and certainly inflammation and pain.

From what I can tell, anything with the suffix "itis" is inflammation.
bronchitis= inflammation of the bronchial tubes
nephritis= inflammation of the kidneys
pancreatitis= inflammation of the pancreas.
Etc., etc. etc.

So what causes inflammation and how can we get rid of it?
Inflammation is like a fire. There is always heat associated with inflammation. It can range from simmering smoldering embers to a full-on 4-alarm blaze. When I've experienced joint swelling and pain from lupus, those joints are always hot, like they are literally burning. The fire, or irritation, is "the bringing of a bodily part or organ to an abnormally excited or sensitive condition." And what would cause this- what would ignite such an internal fire in a human body? The human body is inflamed by stress, toxins, allergens, and food additives.

To reduce inflammation, we can use 2 approaches: 
  1. stop feeding the fire. Remove the offending irritants by reducing stress, identifying and removing allergens and toxins, and avoiding processed foods.
  2. douse the fire with anti-inflammatory substances. This includes either:
  • drugs (anti-inflammatory drugs, which include NSAIDs - nonsteroidal inflammatory drugs such as Advil, Aleve, aspirin, etc. as well as more heavy duty anti-inflammatories, such as corticosteroids and chemotherapy).
  • more natural means. and we have 2 choices here:
  1. eat an anti-inflammatory diet. This would involve no sugar, no dairy, little meat, few grains, lots of vegetables.
  2. take supplements. Specifically fish oil. More specifically, high-grade pharmaceutical, clean fish oil, such as Barlean's, every single day.
Approach #1 (stop feeding the fire) is a great first step for anyone and everyone, and for some people might be enough- especially if they learn of food allergies and sensitivities and take those foods out of their diet. For example, if you learn you have Celiac disease and remove all gluten (and for some people, dairy as well), you will have no more Celiac problems. Do what you can to remove toxins from your environment and allergens and "fake foods" from your diet. For me, removing aspartame and MSG meant no more migraines, and removing gluten meant no more joint pain, and much better digestion.

Other folks, especially those with chronic inflammation, will need to do more. So which of these options is best?

The problem with taking anti-inflammatory drugs long-term is that these drugs, though effective at relieving pain, are hazardous to your health. An anti-inflammatory diet is a wonderful choice, though it can be hard to implement at times (especially when eating out). In general, I believe everyone should try to move their diet towards being less inflammatory. Less sugar, less meat, no artificial sweeteners, lots more veggies.

One thing I believe we can all do every day is to take high-grade fish oil daily. Douse the inflammation. Put out the fire! My current favorite brand is Barlean's. It was recommended to me by an MD. He believes anyone with lupus should take fish oil daily. So do I.




If you or someone you know would like to talk to me about reaching your health goals, send me an email. I am a holistic health coach. E mail me for a free one-hour health consultation, whether it's about implementing an anti-inflammatory diet, losing a few pounds, or finding life balance- anyone who wants to achieve their health goals, big or small- e mail me at carla@thesingingpatient.com .

'til next time, be well, my little fishies!

Carla

Carla Ubrich, The Singing Patient and Health Coach



www.bestpossibleme.com - health coaching- visit this site to get a free e book on nutrition!

Thursday, November 17, 2011

a breath of not so fresh air

Hello faithful readers!

Today's topic: fresh air.
I just returned from a music conference where a friend of mine (Angela) is fighting an uphill battle to make people aware of MCS (Multiple chemical sensitivity). She has been crippled by it. She lost her job because of mold exposure (at the job!) and, if I remember correctly, she traces her MCS onset to the mold exposure.

I understand it to a small degree, because I have sensitivities to smoke and perfumes, and can end up either sneezing or getting a headache from a short exposure. Her consequences are far more serious. And the reason for her attempts at increasing awareness is not to garner sympathy, but to get people to reduce the amount of chemicals they spray on themselves before going into a confined crowded space to interact with others.

"The right to swing my fist ends where the other man's nose begins." - attributed to Oliver Wendell Holmes, Jr.   Perhaps, too, your right to perfume the air with toxic chemicals ends where my nose begins.

Every year Angela brings organic healthy liquid soap and lotion and stocks the lobby bathrooms of the hotel with them, to reduce the chemical fragrance load at the conference. Still, in order to participate, she has to wear a gas mask most of the time at the conference (partly because the hotel is a little moldy). Still, small changes like changing the soap and lotion mean that (unlike previous years) she can now occasionally remove the mask and have a conversation.






Much better than the typical nasty pink soap, which i must say, suspiciously resembles (in both color and fragrance) the pink urinal cakes. Not that I use the men's room (except in desperate gas station situations)- but I once had a job cleaning toilets. Yes, the glamorous life of show biz, I know. Well, hey, I could only go up from there.

Where were we? Oh, yes, fragrance. I'm baffled that so many people "freshen" the air in their homes with chemicals- plugins, stickups, sprays, perfumes- I can just feel my lungs closing up. When we were discussing the public overload of cologne and perfume before the conference (often just walking down the street I have to cover my face to avoid inhaling a gallon of cologne-saturated air)- knowing the amount of neurotransmitter interruption caused by these chemicals, it starts to make me miss good old fashioned B.O.  Maybe that's what my dog likes about sniffing another dog's butt- at least it's organic.

OK, maybe we don't want stinky homes- or armpits- but there are plenty of natural non-toxic effective ways to de-stink.

For the pits: Burt's bees or tom's deodorant. As a major bonus, they also do not contain aluminum, which is linked to Alzheimer's. And anti-perspirant may be linked to breast cancer. (Think about it: our bodies want to sweat and we won't allow it? This can't end well.) Here's my favorite:




For the home: house plants clean the air. I've had peace lilies in the living room for years, and I also just got a snake plant, which is commonly used in the bedroom because it gives off lots of oxygen at night.




For the home: Moso bags are charcoal, which absorb toxins. You set them in the sun outdoors for an hour once a month so they can offgas (release) all the toxins. They last for 2 years. 500g size is for one normal sized room.




And for the car (Dear God, if I have to ride in another taxi that smells like a pink-pine-tree-cigarette...): Mosu bags also come in small sizes for the car!



Happy breathing~

Carla Ubrich, The Singing Patient and Health Coach


www.bestpossibleme.com - health coaching

Wednesday, November 9, 2011

Lupus and Diet

Today I spoke/ sang for a support group at the SLE Foundation in NY City. What a great group of people.
Lots of great energy and ideas bouncing around, and I was heartened and inspired by the open-mindedness, strength, willingness and ease of communication. Right near Penn Station, too- really easy to get to!



I've mentioned this before, but I'll mention it again. Support groups for lupus have come a long, long way in 20 years. When I first became ill with lupus, support groups had 2 allowed topics: prednisone and lawyers. Any talk of alternative medicine or emotional stuff was shut down. So happy to say that is no longer the case. I watched today as a patient brought up her concerns about cellcept and placquenil to the rest of us, and we were all able to inform her of our experiences, helping to ease some of her anxiety and sort things out so she could make a decision. Beautiful.

From their wall (if this were a bumper sticker, it would be like "baby on board!"):


Typically when I talk, I tell my story and how humor, creativity, alternative medicine and diet helped me get my health back. When speaking to this group today, the focus was really about how I got to be in a drug-free remission, with all my hair and enough energy to do what I want to do in life. And we talked a LOT about diet. People interjected with comments and questions, which was great- I love an interactive dialogue, versus a monologue (90% of my gigs are a "performance" and all the audience does is clap and occasionally sing along when invited to do so). I learn things too. (For example, I did not know that 1/3 of lupus patients have RA and 1/3 of RA patients have lupus. Explains why the "purple jewelry" charm bracelet I have has both an RA blue ribbon and a purple lupus ribbon).

I was surprised how very interested- not just receptive, but really interested- these patients were in hearing about diet. And that is what we talked about most.

There are 2 diets I've seen out there which both claim to heal/ help/ even cure lupus patients:
Paleo Diet ("caveman" diet that is meat and veggies- and lots of raw food)
Lowfat Raw Vegan (no meat! but all raw food, both fruits and veggies).

Seems confusing- all meat, no meat- what's better?
Perhaps a better question is: what do these 2 effective anti-lupus diets have in common? And from what I can tell, it's a lack of dairy and a lack of grains, particularly gluten. This diet is known as the GFCF diet (gluten free, casein free- a.k.a. dairy free) and has been used effectively with numerous autoimmune diseases and autism.

My hope and dream in going to speak to lupus (and MS and myositis and RA) patients is to one day hear back from some of them that they tried a GFCF  diet, and it helped to reduce or eliminate symptoms, and helped them to reduce or eliminate their need for immune suppressants. And for those who have trouble learnign this diet on their own, I offer reduced rates for patients as a health coach, where I also support and educate people so they can relearn to eat in this somewhat counter-cultural way. It isn't easy at first, but it gets easier after you adjust. And even when it's at its hardest, it's easier than being on prednisone. I have my life back. My desire is to give this gift to others suffering from lupus.

If you or someone you know would like to have a free one-hour health consultation with me, whether it's about gluten-free or not- anyone who wants to achieve their health goals, big or small- please e mail me at healthcoach@bestpossibleme.com .

On another post I'll talk again (I have before) about the other 2 bugaboos I eliminated:
MSG and nutrasweet. Happy trails 'til next posting~

Carla Ubrich, The Singing Patient

www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich- funny medical songs


Saturday, November 5, 2011

Most Women with Lupus Can Have Successful Pregnancy Outcomes


Most Women with Lupus Can Have Successful Pregnancy Outcomes

Results from Multicenter NIH PROMISSE Study Find Pregnancy Safe for 80 Percent of Women with Lupus

Chicago, November 5, 2011—Promising research led by investigators at Hospital for Special Surgery may offer hope for women with lupus who once thought that pregnancy was too risky.

Results from the multicenter National Institutes of Health (NIH) funded PROMISSE initiative, being presented Monday, Nov. 7 and then during a press conference on Tuesday, Nov. 8, during the American College of Rheumatology’s 2011 Annual Scientific Meeting in Chicago, show that most women with stable lupus can have successful pregnancies.


“There was a misconception, based on outdated experience, that women with lupus should not try to have children,” said Jane Salmon, M.D., the study’s senior author and Collette Kean Research Chair at Hospital for Special Surgery in New York City. “Now that our treatments are more effective and we have a better understanding of the disease, we can identify a window when pregnancy is safe and outcomes are good for mother and fetus.”

Historically, women with systemic lupus erythematosus (also know as SLE or lupus) have been advised not to become pregnant because of risks to their own and their fetus’ health. SLE is a chronic inflammatory disease, in which the body’s own immune system attacks tissues of the body and can cause complications during pregnancy.


Drs. Salmon, together with Jill Buyon from New York University Medical Center, and their collaborators evaluated 333 pregnant women with lupus from the PROMISSE Study (Predictors of pRegnancy Outcome: BioMarkers In antiphospholipid antibody Syndrome and Systemic Lupus Erythematosus), which seeks to identify biomarkers that predict poor pregnancy outcomes. The research team found that 80 percent of lupus patients had a favorable pregnancy outcome.

Patients with lupus may be free of symptoms for long periods of time and then experience a disease “flare,” when symptoms such as rash, joint pain, chest pain, swollen legs, bruising and/or fatigue suddenly appear.

“Most women with stable lupus, defined as limited disease activity and no flares during the time of conception and the first trimester, had successful pregnancies,” explained Dr. Salmon, who is also the principal investigator of the PROMISSE Study. “We learn from these results that timing is a most important element for successful pregnancy in women with lupus and that avoiding pregnancy during periods of increased disease activity is essential.”

In the study, two categories of pregnancy complications were evaluated: the health of the mother and of the fetus. The research team studied development of mild, moderate, or severe increases of lupus activity, or flares, in expectant mothers. For the fetus, the study examined the worst outcome – death – or situations in which the well-being of the child would require extended hospitalization in a critical care unit.

Of the 333 women with lupus studied, 63 had poor outcomes. Ten percent of mothers experienced preeclampsia, a serious complication characterized by the onset of high blood pressure and appearance of protein in the urine. Ten percent experienced mild or moderate flares at 20 weeks and eight percent experienced flares at 32 weeks. Nineteen women experienced death of the fetus and 30 women delivered before 36 weeks or had newborns of small gestational size – smaller in size than normal for the baby's sex and gestational age, commonly defined as a weight below the 10th percentile for gestational age.

None of the women in the study was pregnant with more than one fetus, took more than 20 mg/day of prednisone, or had abnormally high excretion of protein or impaired kidney function. The women who experienced complications had more active lupus at 20 and 32 weeks and higher levels of antiphospholipid antibodies.

[My question here is- did the pregnancy trigger the flare for these women? If the active lupus doesn't kick in until week 20, the women is already pregnant at the time the flare starts, so her lupus being "stable" is not a guarantee that her pregnancy will end well. How can we know whether a woman is in that 80% or the 20%? Since I have met women with lupus whose pregnancies ended in miscarriages and one whose pregnancy triggered a flare that is still active, 10 years after the fact, I would still temper the hope for a good outcome - very good news for women with lupus who deeply desire to bear their own child- with the caution of a possible very bad outcome. Know the risks going in- for 20% of these patients, the pregnancy had a bad outcome. How is that statistic in comparison with healthy women? How many healthy women have pregnancies resulting in their own poor health and/ or miscarriages? Probably not 20%. Of course, 80% of pregnant lupus patients having a desirable outcome is far better than we believed it would be.]

The PROMISSE study was funded by the National Institute of Arthritis, Musculoskeletal and Skin Diseases of the National Institutes of Health in 2003 to identify biomarkers that would predict poor pregnancy outcomes in lupus patients. To date, the PROMISSE investigative team has enrolled 647 volunteers who are monitored with monthly checkups and research laboratory studies looking at genes and circulating proteins that may predict the course of pregnancy. PROMISSE will continue through 2013 with $12.3 million in support over ten years from NIAMS and the office of Research in Women’s Health. Dr. Salmon and co-investigators from 11 academic centers will continue to examine a broad range of genes and molecular pathways that can affect pregnancy in women with lupus, and, it is anticipated that their findings will have applications for the prevention of miscarriage and preeclampsia in healthy women.

The PROMISSE Study is coordinated by Dr. Salmon; Other investigators include Michael Lockshin, M.D., and Lisa Sammaritano, M.D., at Hospital for Special Surgery; Jill Buyon, M.D., at New York University School of Medicine; Ware Branch, M.D., at University of Utah Health Sciences Center; Carl Laskin, M.D., at Mt. Sinai Hospital in Toronto, Canada; Joan Merrill, M.D., at the Oklahoma Medical Research Foundation; Michelle Petri, M.D., MPH, at Johns Hopkins University School of Medicine; Mimi Kim, D.Sc., at Albert Einstein College of Medicine; and Mary Stephenson, M.D., at the University of Chicago.

About Hospital for Special Surgery
Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 2 in rheumatology, No. 19 in neurology, and No. 16 in geriatrics by U.S.News & World Report (2011-12), and has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at www.hss.edu.

Lupus Research Findings

Below are highlights of patient-focused research from Hospital for Special Surgery that will be presented at the Annual Scientific Meeting of the American College of Rheumatology (ACR) in Chicago, from November 5-9. This information was forwarded to me by the Hospital for Special Surgery. I have pasted it verbatim, minus the room locations for the conference. My comments on the research findings are inserted below each study.

Hospital for Special Surgery Physician-Scientists Share Advances in Rheumatology Research

Chicago, November 5, 2011—Hospital for Special Surgery physician-scientists who focus on arthritis, lupus, vasculitis and related conditions are traveling from New York City to Chicago this week to share their recent findings at the 75th Annual Scientific Meeting of the American College of Rheumatology (ACR).

Highlights of presentations by Hospital for Special Surgery physician-scientists include:

Most Women with Lupus Can Have Successful Pregnancy Outcomes


Investigators of the NIH-funded PROMISSE Study (Predictors of pRegnancy Outcome: BioMarkers In antiphospholipid antibody Syndrome and Systemic Lupus Erythematosus) evaluated 333 pregnant women with lupus and found that 80 percent of patients had a favorable pregnancy outcome. The findings provide reassurance for patients with stable lupus, who are contemplating pregnancy, and suggest factors that merit caution for the minority of high-risk lupus patients. “Patients enrolled in this study had inactive lupus at the time of conception and during their first trimester, which we believe explains why a large majority of these women had successful and uncomplicated pregnancies,” explained Jane Salmon, M.D. “Now that our treatments are more effective and we have a better understanding of the disease, we can identify a window when pregnancy is safe and outcomes are good for mother and fetus. Our findings should change the way patients and physicians view pregnancy in women with lupus.”

[Would like to know more about the 20% who didn't do so well. It's nice to encourage people but also wise to caution them. What women should *not* to try get pregnant? I met a lupus patient who had survived 9 miscarriages. My next blog post will give further detail on their findings.]

Life Challenges Prevent Those with Lupus from Keeping Doctors’ Appointments 

Healthcare providers at the Mary Kirkland Center for Lupus Care observed that many patients failed to keep doctors’ appointments, which can lead to less-favorable outcomes in these lupus patients’ care. Researchers at the Center examined this patient population, largely homogenous with low socioeconomic status, and found that most of these individuals did not attend their appointments because of either tardy or unreliable transportation, such as ambulettes, or because of insufficient childcare. “Healthcare appointment compliance is critical for a lupus patient’s care, because timely communication with their physician keeps both parties up-to-date on prescription and care instructions,” explained senior author. Doruk Erkan, M.D. “By not following up with scheduled appointments, patients may stay on a course of medication that should be changed, which could quickly become dangerous.”  

[ OK, clearly the current system of patients schlepping all over the place and killing a half day to get 8 minutes with a doctor isn't working, especially for people of lesser means. Heck, even those of us of medium means, once we get there, have a hard time sitting around in crowded, germy, cold, fluorescent-lit waiting rooms. We obviously can't go back to the old days of house calls- doctors are too used to having everyone come to them- but perhaps we can move forward and embrace technology, allowing patients to phone, e mail, text, or skype in their appointments. It's not as good as in person, but it's better than people not having an appointment at all. And let me just point out, at least for me, the appointment is *two* appointments because I have to go to the lab a week before the appointment to get my blood drawn. That one can't be skyped or phoned in- I have to go- but maybe a traveling lab service? Maybe at a local Walgreens? I was at one point going to a clinic who wanted me to come every single week- one for labs, once for some other test, once for my appointment- and I wasn't allowed to drive because I wasa anemic. I had to get someone to drive me every time, and it was an hour from my house. I said "Can't I just get my blood drawn near my house?" They said, and I quote "Well this is more convenient for us." Seriously??? We have to make things more patient-friendly. Period. That is what I get from this research. ]



Rheumatoid Arthritis Patients Have Low Expectations After Knee Replacement Surgery 

Compared with osteoarthritis (OA) patients, individuals with rheumatoid arthritis (RA) who undergo total knee replacement surgery have lower expectations about their postsurgical outcomes. These lower expectations could cause some patients to slack on their postsurgical rehabilitation, leading to worse outcomes. The researchers compared 62 RA patients with 124 OA patients to make their conclusions. “If rheumatoid arthritis patients are healthy enough to have surgery, they should really expect good outcomes. It would be a real shame if these patients could have significantly improved function, but don’t because they expect to be able to do less in their postsurgery therapy,” said Lisa Mandl, M.D., co-author of the study and rheumatologist at Hospital for Special Surgery. “What we can do as doctors is ensure that we educate our patients properly,” said Susan Goodman, M.D., HSS rheumatologist who led the study.


[I don't have RA but I do agree with the belief and the finding here that is you expect a bad outcome, you will help create a bad outcome by both your belief and your actions which line up with that expectation- a.k.a "self-fulfilling prophecy."]

One-Year Results of Cardiovascular Intervention Program in Lupus and Antiphospholipid Antibody 

Results from the first year of a three-year cardiovascular disease prevention counseling program in lupus patients show that the program’s patients are motivated to better control their cardiovascular health by maintaining healthy diet and exercise regimes. However, while there was a significant improvement in diet and exercise habits, the findings do not show a significant improvement in clinical parameters such as high blood pressure, body-mass index, or cholesterol profile at one-year follow-up. “We’re encouraged that these patients are working hard to improve their cardiovascular health, and it is possible that they will have improved results after the study has reached the end of its third year,” said senior author Doruk Erkan, M.D. “These results demonstrate just how difficult it is for lupus patients to improve their cardiovascular disease risk factors that would be relatively easier to achieve in most other individuals.”


[OK, and now how about some info as to *why* this is the case? I guess in order to find this out I'd need to be at the conference this weekend. But, since I just learned about this conference, and my time machine and transporter devices are on the fritz, I'll just have to wonder. This is a very discouraging bit of news, that motivated lupus patients can change their lifestyles and yet not lose weight or improve their overall health. Why is this? Are they on drugs that cause weight gain? What diet cahnges and what exercises were they doing? More info, please. Don't leave us powerless and hopeless.]

Tweaking Withdrawal of Rheumatoid Arthritis Medications Before Surgery May Reduce Disease Flares 
To minimize infections, doctors stop giving anti-TNF medications before surgery.  These medications are powerful immunosuppressants and effectively control disease activity in RA patients.  However, it is not known how long anti-TNFs should be held prior to surgery to ensure the best outcomes in patients.  Stopping them too early may put these patients at risk for RA flares, which may complicate recovery. This study found no increased risk of infections in RA patients taking anti-TNF medications compared with those not on these medications, and a trend toward more postoperative flares in the anti-TNF patients. Different anti-TNFs were held seemingly arbitrarily, with no correlation to half-life.  Rheumatologist Lisa Mandl, M.D., senior author of the study, said more evidence-based studies are needed to determine optimal timing of pre-operative use of these medications.

[Interesting. Worth studying. I don't have RA, so not much else to say.]

Stress Triggers Disease Flares in Patients with Vasculitis 

Stress can contribute to disease flares in those with Wegener’s granulomatosis – a form of vasculitis that causes inflammation that destroys blood vessels. This is the first study to show that mental health is a risk factor for patients with vasculitis. “When this disease flares, people are really sick. It affects the lungs, sinuses, kidneys and nerves, and can cause fever and rashes,” said Robert Spiera, M.D., lead author of the study and director of the Vasculitis and Scleroderma Program at Hospital for Special Surgery. Dr. Spiera suggests that doctors be attentive to the psychological health of these patients along with their medical care.

[ Well, I'm glad we have a specific study to back up what we already know- stress triggers flares in ALL diseases. Science often seems to have the job of proving that common sense is... wow, true. But nowadays you can't go around spouting common sense without a scientific study to back you up, or you'll get sued. So, thanks science! Stress is BAD!]

About Hospital for Special Surgery :



Founded in 1863, Hospital for Special Surgery (HSS) is a world leader in orthopedics, rheumatology and rehabilitation. HSS is nationally ranked No. 1 in orthopedics, No. 2 in rheumatology, No. 19 in neurology, and No. 16 in geriatrics by U.S.News & World Report (2011-12), and has received Magnet Recognition for Excellence in Nursing Service from the American Nurses Credentialing Center, and has one of the lowest infection rates in the country. From 2007 to 2011, HSS has been a recipient of the HealthGrades Joint Replacement Excellence Award. A member of the NewYork-Presbyterian Healthcare System and an affiliate of Weill Cornell Medical College, HSS provides orthopedic and rheumatologic patient care at NewYork-Presbyterian Hospital at New York Weill Cornell Medical Center. All Hospital for Special Surgery medical staff are on the faculty of Weill Cornell Medical College. The hospital's research division is internationally recognized as a leader in the investigation of musculoskeletal and autoimmune diseases. Hospital for Special Surgery is located in New York City and online at www.hss.edu

About Carla Ulbrich:
Carla Ulbrich is The Singing Patient and author of How Can You Not Laugh at a Time Like This?, a book which has received the Lupus Foundation of America's Seal of Approval. She lives in Central New Jersey, has released 5 CDs of funny songs, and has strong opinions on the topic of lupus, as she has been living with it for 20 years. An avid user of alternative medicine and a reluctant user of mainstream medicine, there is hardly anything Carla hasn't tried to regain her health. And a lot of it worked. Carla is very active, and has fully recovered from stroke and kidney failure to resume touring and performing as a comical songwriter. Many of her songs are about her "adventures" as a patient ("Sittin' in the Waiting Room," "On the Commode Again," "Prednisone," etc.) Hear them here:
 www.thesingingpatient.com

Monday, October 24, 2011

Enter to win a year's worth of Gluten Free Goodies!


Hello my Gluten-free friends!

Just stumbled upon this chance for you to win a year's worth of Gluten Free Yummies from French Meadows Bakery. The info is on Christine Miserandino's "But You Don't Look Sick" website:

http://www.butyoudontlooksick.com/articles/spoon-lady-speaks/win-1-year-supply-of-french-meadows-bakery-organic-gluten-free-products/?utm_source=feedburner&utm_medium=twitter&utm_campaign=Feed%3A+bydls+%28ButYouDontLookSick.com%29

Sounds yummy, and I do feel better since going gluten-free several years ago. Remember of course, even gluten free cookies are still... cookies, so make sure you also get in your fruits, veggies, and whole grains.
Here's to health eating and feeling great!

Carla Ulbrich
The Singing Patient, author of "How Can You NOT Laugh at a Time Like This?"


www.bestpossibleme.com - health coaching



Thursday, October 20, 2011

Great Resource for Lupus info and Support

On October 8, I attended and performed/ spoke as The Singing Patient for the Lupus Summit in Charlotte, NC.

Room full of Lupus Thrivers and their loved ones


I had the pleasure of meeting a bunch of other fabulous lupus patients, and I was doubly impressed. First of all with the patients, and second, with this incredible chapter of the LFA.

The patients. Lupus patients are real survivors. The indignities we tolerate are too many to mention. The chronic pain, the years of being told we're imagining our problems, the disfiguring side effects of the drugs, people telling us we are sick because we have sin in our lives, or they ask weird questions like "isn't that AIDS?".. or they suggest that maybe we'll get better if we get pregnant (never mind that I wasn't married when someone suggested that, and I certainly had no energy to raise a child, AND it turns out pregnancy can actually trigger lupus or make exiting lupus worse- UGH!).

This is a chronic disease, so we're looking at a lifetime of more of these indignities.  It's one thing to survive a plane crash, or any other event that happens in an instant and then is over. That is remarkable and worthy of celebration. But it is another thing entirely to survive day after day and year after year of struggle with illness.

That kind of struggle changes you profoundly. And hopefully for the better. And this, if you survive it all, can make you into a very interesting, strong person, often with a twisted wicked sense of humor. And that is what I love about my fellow lupus patients. The strength, the resolve, and the humor. We are true survivors.

These are the kind of people I met at the Lupus Summit. Women who have been abandoned by loved ones, who have survived multiple miscarriages, stroke, organ failure, and more, and who have often gone on to make their lives better because of these difficult events.

The LFA Piedmont Chapter. 

with Christine John Fuller

When I first went to a support group in 1994, I was depressed by it. It was full of people who were in pain, unhappy, and had no hope. And the moderators shut down any talk of alternative medicine, or even working through emotions. All we could talk about was prednisone and disability lawyers. Thankfully, I decided to look elsewhere, because I did not want to end up in a wheelchair getting all my bones replaced after settling for prednisone as my only course of action. And I found a lot of things that helped me to get back off the prednisone and stay well.

And now, all this time later, I'm happy to say that support groups have changed a lot in 17 years. I'm particularly impressed with the open dialogue, the talk of self-care and dietary changes, and the responsibility I see patients taking for their lives. We can get our dignity back, and reclaim much of our health.

The Lupus Summit is ridiculously cheap- only $15 to attend!! and happens annually in Charlotte, NC. And if you're too far away to attend, you can watch videos of many of their presentations online for *free*. They are archived here (my talk will be archived here eventually, too):
http://vimeo.com/28278431

Kudos to Christine and Elaine for running a stellar chapter of the Lupus Foundation of America. You are making a difference, and I hope other chapters will follow your fantastic example.

with Elaine Neilson
Carla Ubrich, The Singing Patient

www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich- funny medical songs

Monday, October 3, 2011

Guest post: Lupus and MS


Multiple Sclerosis and Lupus: The Connections

Today we have a guest blogger, Chipper Nicodemus, writing in on the topic of the commonalities between Lupus and MS.

What is Lupus
Lupus is a chronic inflammatory autoimmune disorder that affects the skin, joints kidneys and other organs. An autoimmune disorder is a condition in the body where the immune system incorrectly and mistakenly attacks and destroys the good, healthy body tissues. Lupus is one of more than 80 autoimmune disorders. 
Causes and Risk Factors of Lupus
The exact cause of Lupus isn’t known, but some researchers believe that the disease occurs after an infection with an organism that looks like a mistakenly identified protein and wrongfully is then attacked. In a normal body the immune system’s white blood cells usually protect from the harmful substances, but in a person with Lupus the white blood cells are mistakenly attacked. This happens because the affected immune system cannot tell the difference between healthy and harmful cells. Women are nine times more likely to get lupus than men.
The Treatment of Lupus
The main goal of treatment of lupus is to reduce symptoms, and control the autoimmune process all while keeping the body’s ability to fight the disease. There is no cure for Lupus, but anti-malaria drugs are used to battle skin and arthritis symptoms. More severe or life threatening symptoms, such as heart or lung issues, require treatment with stronger medications in the form of various immune suppressants.
What is MS
Multiple sclerosis, like Lupus is an autoimmune disorder, affects over 300,000 Americans and is a chronic central nervous system that affects the brain and spinal cord. Each MS symptoms can last for days, weeks or sometimes even months and there are periods of reduced or even luckily no symptoms.  Some of the more common symptoms are loss of balance, muscle spasms and even problems walking, but even extend to sexual problems, incontinence and speech problems.
Treatment of MS
Similar to Lupus, there is no cure for multiple sclerosis, but there are therapies that can slow the disease down. The goals of the treatment of MS is to control the symptoms and help the patient keep a good quality of life. Different types of medications are used to slow the progression of MS and can be taken for longer periods of time. There are medications that reduce muscle spasms, reduce urinary problems and sometimes antidepressants are prescribed for mood or behavior symptoms.
How Lupus and MS Relate
There are several similarities between Lupus and MS, including many key symptoms and affects. Sometimes Lupus can mimic the symptoms of Multiple Sclerosis and only a doctor can correctly diagnose one or the other. The following list are some examples of how Lupus and MS relate.
Autoimmune disease
Onset in early adulthood
Women more likely affected (90% of lupus patients and approx. 85% of MS pateints are women)
Chronic disorders
Treatments ease symptoms rather than cure
No cure
Do you have MS or Lupus or know any family members or loved ones that do? Please feel free to share your experiences below in the comments.
This guest blog post was written by Chipper Nicodemus, an SEO Assistant at Healthline.com. Healthline Networks has extended its health search technology services to include specialized health tools that address the patient pathway – from symptoms to treatments, to doctors, to medications.

Healthline Networks, Inc. • Connect to Better Health

Comment From Carla:
It is interesting to note that you can have both lupus and MS. There’s no rule saying you can only have one autoimmune disease, or even just one disease. I know someone who has lupus and cancer. I myself have 3 autoimmune diseases (lupus, Raynaud’s, Sjogren’s) and fibromyalgia.
What is interesting to note is the commonalities amongst autoimmune diseases and the strong trend towards their mostly affecting women, and mostly women between 20-40. For thoughts on the gender issue, see my previous post on that topic here:  http://lupusandhumor.blogspot.com/2011/09/why-do-more-women-than-men-get.html

Carla Ulbrich, The Singing Patient
_____________
www.bestpossibleme.com - health coaching

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin 


Friday, September 30, 2011

Candida. Part One of many, I'm sure

Today's topic is Candida. Not the female name. Not the Abba song. The fungus, the yeast, also known as thrush (in the mouth), a.k.a. yeast infection (in the hooha). But if you have Candida infections in the hooha or the mouth, you've probably got a systemic problem- you're swimming in yeast.
And here's the thing about systemic yeast overgrowth- the symptoms overlap a LOT with autoimmune disease.
  • Frequent stomach pains and digestion problems
  • Skin problems (skin infections, eczema, psoriasis, acne)
  • Foggy brain / Trouble concentrating
  • Constant tiredness and exhaustion
  • Anxiety
  • Mood swings
  • Obsessive compulsive disorder (OCD)
  • Anger outbursts
  • Irritability
  • Headaches
  • Intense cravings for sugars, sweets, and breads
  • Itchy skin

Knowing how hard it is to nail down a diagnosis of most autoimmune diseases, especially lupus, wouldn't it be good to find out whether we had a yeast overgrowth? Perhaps even just a yeast overgrowth, and not an autoimmune disease. Or maybe an autoimmune disease that was caused by or made worse by a candida overgrowth... Definitely worth looking into.

What causes candida overgrowth? One really big precipitating factor is use of antibiotics. The rapid rise in Candida overgrowth in the US immediately followed the beginning of widespread use of antibiotics. There are good, friendly bacteria in our intestines that break down our food and the fiber in it. They also keep the candida in check. But antibiotics are like atom bombs- they kill everything, not just the one bacteria the doctor prescribed it for. The good bacteria become "collateral damage" and now we leave the door wide open for the candida to move in and take over, wreaking havoc.

Unfortunately, another thing that causes candida overgrowth is use of steroids such as prednisone, the very drug we are using to treat the symptoms that were possibly caused by candida overgrowth.

Twice I have gone on a candida diet - anti-candida, not pro candida, though most of my life I've been on a pro-candida diet and didn't know it. Lots of sugar and carbs. Both times were after a 9-month course of prednisone. Once I used the diet plus herbs, and once I used the diet plus nystatin (a prescription which is hard on the liver, but effective).

I got to thinking "It's time again," as I have not done a candida diet/ treatment program since my 3rd round of long-term prednisone, and I'm pretty sure I have a Candida problem again. I was waffling on pursuing the idea again when I received a letter from someone who heard me on the radio back in January in Florida and had totally cleared up her lupus by doing the candida elimination. She sent me the info for the National Candida Center, and I'm working with them now. Thank you, universe, for that confirmation, and friend, for taking the time to write me.

I'm doing some tests over the weekend to be certain, and I'll tell you all about those in the next post.

Are you curious as to whether you might have a candida overgrowth?

Do these self-tests here:
http://www.nationalcandidacenter.com/candida-self-exams/

To your good health and mine!
Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.bestpossibleme.com - health coaching
www.youtube.com/user/carlaulbrich - funny songs

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get the book here: http://tinyurl.com/348hroc

Tuesday, September 27, 2011

Lupus Speaker/ Blogger/ Author Sara Gorman in NYC this Thurs. 9/29

Hey friends!

Coming up very soon is a great opportunity to hear from Sara Gorman, author of Despite Lupus.
She is presenting a workshop in New York City on Thurs. Sept 29 at noon on living well ... yes, despite lupus!

Please note: although it is free, you need to call and reserve a space in this workshop.

This is a monthly series, and if you are in or near NYC and have lupus, what a great resource.

I tried to upload their gorgeous flyer onto this blog to no avail (I'm not the most tech-savvy blogger on the planet). So I'm pasting in the info here. Bottom line- here's the info.


Thursday, Sept 29, 12-2 PM
Place:  Conference Room A, 2nd Floor
Topic:   Living Well, Despite Lupus!

Sara Gorman, Health Blogger, lupus patient of 10 years and author of “Despite Lupus: How to Live Well with a Chronic Illness”

The SLE Workshop is coming up!

If you have lupus, you know first-hand the emotional and physical challenges that can accompany life with a chronic illness.

Please join us for this special guest presentation by author and health blogger Sara Gorman, who will share her perspective on  her most important lessons on living well, despite her illness.

Sara Gorman was diagnosed with systemic lupus at the age of 26. As she relates in her book,  she was determined not to let lupus rewrite her plans for the future, as she fought to maintain her demanding work schedule, social life and invincible attitude. But after four years, she felt  she was “fighting life, not living it.”

In Sara’s words, she began to “work with the disease rather than against it, and decided to start living well – despite lupus.” Learn about the steps she took to redirect her life to achieve this.   
A native of Indiana and graduate of the University of Notre Dame, Ms. Gorman resides in Virginia with her husband & two young daughters.

After the presentation, Ms. Gorman will join us for an informal group discussion where members can share their thoughts and experiences regarding this personal topic, as well as an open discussion.

You will also have an opportunity to meet Lysa Silverstein, our new Social Work Intern and SLE Workshop Coordinator. Please contact Roberta

PLEASE CALL TO ATTEND: To attend the workshop or for additional information, please call Roberta Horton, LCSW, ACSW (212) 606.1033  and leave a message with your name and phone number. Space is limited.

The SLE Workshop is a program of Hospital for Special Surgery’s Department of Social Work Programs.  Summaries of selected programs are available on our Hospital’s website at www.hss.edu/SLEWorkshop

~~~~~~~~~
Hope to see you there!

Carla
Carla Ulbrich
The Singing Patient
www.thesingingpatient.com

Tuesday, September 6, 2011

Causes of Autoimmune Diseases

Last time, we discussed possible reasons why more women than men develop autoimmune diseases. In the case of lupus, it's 9 women for every 1 man who is diagnosed with lupus.

Slate.com offered some possible theories for the causes of autoimmune disease, based on the gender imbalance: genetics, pregnancy/ birth leaving another person's cells in your body, and estrogen. Here's the problem with these theories: the new conventional wisdom is that genetics do not really cause disease. As Dr. Oz would put it, "Genetics load the gun; lifestyle pulls the trigger." Wish I had a better, less violent metaphor, but it does get the point across. Genetic tendencies are not our inevitable fate. Just because I'm in a bar, it doesn't mean I'm going to get drunk. (Slightly less violent metaphor?)

Now before I sound like I"m blaming the victim, let me state 2 things. One, I've been living with lupus for 20 years, so I'm talking about me, too. Two, many of us are doing things we *think* are good for us, usually because we've been told that it is, but it turns out to be a problem in the long run. I'm trying to empower us to get better, so please take this not as fingerpointing at the sick person, but fingerpointing at what is possibly making the person sick. I honestly believe that none of us wanted or chose to have lupus.

In my opinion, everyone with an autoimmune disease should be tested for the following:
1) Vitamin deficiencies, especially Vit. D
2) heavy metal poisoning, including mercury
3) Celiac disease and Gluten intolerance
4) other food allergies
5) Candida overgrowth

Any one of these, and certainly a combination of these, is going to cause problems. And if left untreated, the problems will cause problems. Multiplying like rabbits. And not the good cute rabbits who lay chocolate Cadbury eggs on your lawn on Easter. Mean rabbits.

And here's the thing I was talking about before- when we do stuff we think is good for us, like stay out of the sun because we have lupus, we worsen our vitamin D deficiency. We *must* supplement with high quality vitamin D if we are avoiding the sun, or live north of Maryland, esp. between October and May. Symptoms of vitamin D deficiency include depression, chronic fatigue, weight loss, diabetes, heart disease, stroke, osteoporosis. http://www.vitaminddeficiencysymptomsguide.com/

There are so many examples of us doing something that's not even fun, thinking we're making ourselves healthier when in fact we're making ourselves worse. You would think if you're going to pay the price for bad decisions, you could at least enjoy yourself along the way. We get a cavity, so we go to the dentist, and he gives us a filling. that's made of MERCURY, a known toxin, extremely poisonous. It can cause rashes, muscle weakness, kidney function, memory impairment, neurological problems, insomnia (is this sounding like lupus to anyone?). BTW, there are non-mercury fillings available.But you need to ask your dentist if (s)he is mercury-free. If your filling is silver in color, it definitely has mercury in it,  as much as 55%. http://en.wikipedia.org/wiki/Mercury_poisoning

We think we're being healthy eating whole wheat bread. Sounds like a nice hearty, healthy food. But not if you have Celiac disease or gluten intolerance. Celiac causes malnutrition. If you have Celiac and continue to eat foods that contain gluten, it will kill off all the villi in your small intestine and make you unable to absorb nutrients from your food. You can then stuff yourself and still be starving from malnutrition. Now there's a magic trick I don't want to volunteer to be a part of. Milk products- another food we were told was healthy- is also a problem for people with Celiac. http://www.webmd.com/digestive-disorders/celiac-disease/celiac-disease-symptoms . People gluten intolerance suffer the same symptoms as those with Celiac, but the blood tests come out different. http://gluten-intolerance-symptoms.com/

get tested for other food allergies. 100% of lupus patients have food allergies. 100%?! And food allergies come in 2 sizes: immediate (you know these- you eat shrimp, you have hives a few hours later; you eat peanuts, you can't breathe; me, I eat pineapple and my tongue immediately itches then hurts for 3 days- those kinds of food allergies are obvious); but then there's the delayed reactions- you could eat something then get joint pain that doesn't show up for as long as 4 days later. Who's going to figure that out? Well, a blood test, that's who. Or, alternately, the elimination diet. http://en.wikipedia.org/wiki/Elimination_diet . People blame autoimmune diseases and symptoms on genetics, sin, bad karma, or some symbolic psychological issue manifesting itself... Yeah, OK, and maybe I'm just allergic to cheese. On top of whatever I started with, I developed so many new allergies after taking prednisone, I practically needed to live in a bubble. A latex free bubble that is.

Here's another one, and all too common. We get the flu or bronchitis and we go to the doctor- the responsible thing to do- and he gives us antibiotics. Which, if you have a cold or bronchitis, doesn't really help, because those are viruses, not bacteria. But we take it anyway to "avoid getting a secondary infection," but really because that's the only trick the doc has up their sleeve. When the only tool you have is a hammer, everything looks like a nail. Well, when you take antibiotics, they kill off all the good bacteria in your digestive system. Yeah, our digestive system is filled with all kinds of cooties, and we need those cooties. Those good cooties are what we need to multiply like (good) rabbits. Once the good cooties are killed off, the bad cooties, especially candida can take over and wreak havoc. And not just the "inconvenience" of having a smelly yeast infection or thrush, which are gross, but I'm talking systemic problems: brain fog, digestive problems joint problems, exhaustion, irritability, headaches, rashes, sugar cravings, and worst of all- zits! oh Lord not zits! http://www.candidasymptoms.net/#candida_symptoms . Know what else causes candida overgrowth? Steroids. Prednisone. Oh the irony.

OK, that's a lot to chew on, even though it's gluten free. And you could just go on a candida diet or gluten free diet without getting tested, but trust me. Both of those diets are so challenging, especially at first, that you'll want to know for sure that you need to be on them. It will help you stay motivated. You can get tested for heavy metals, candida antibodies, celiac and gluten intolerance antibodies, and vitamin deficiencies and most of these tests are just blood tests. The celiac one can involve an endoscopy and that's  a bigger deal, but if you have celiac and find out, it would be a life-changing piece of information.


Until next missive-
Carla

Carla Ulbrich, The Singing Patient
_____________
www.thesingingpatient.com
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich

"I am reading Carla's book How Can You NOT Laugh at a Time Like This? and loving it. I LOVE Carla's songwriting, so I'm not surprised that her prose writing is as smart, funny, and insightful as her music." - Christine Lavin

get the book! http://tinyurl.com/348hroc