Showing posts with label lupus. Show all posts
Showing posts with label lupus. Show all posts

Tuesday, May 5, 2020

Staying Positive During Quarantine

Like a lot of people with chronic illness, this quarantine is not my first rodeo.
I've been "grounded" before by severe bouts with chronic illness (systemic lupus, along with lupus nephritis, Sjogren's and Raynaud's).
Twice, it was severe enough to leave me completely bed-ridden for months.
I know a little about How to Quarantine.

Being cooped up doesn't have to be an endless sea of nothingness and depression.
We still have creativity and humor to keep our spirits up. And both of these traits nurture resilience. I believe that is in part because being creative gives us something to focus on besides everything that's not going well. And it can provide an outlet for emotion and self-expression, and even a sense of control.

In 2002, I was in the hospital with my kidneys failing, congestive heart failure, pleurisy, neuropathy- the lupus was raging out of control. They put me on 9 drugs and chemo to get it under control and I was getting really depressed from the chronic pain as well as being in the hospital and feeling defeated by lupus (again).

Then Saralyn, my silliest friend, came to visit me. She treated me just like things were normal, instead of awkwardly standing there not knowing what to say. She jumped from goofy topic to goofy topic until she got me to laugh. About maxi pads. And how annoying they are. It changed everything.

I stayed up late jotting ideas on scraps of paper, writing a really dumb song about how I hate maxi pads and how I can never find a normal box of pads- just weird ones. I was completely distracted from my pain and from the fact that I was in the hospital with 99 problems. The act of creation was an act of me reclaiming my sense of humor and a sense of control.

Now, that maxi pad song is not one that I share with the world, but it opened the floodgates. I spent hours every day for the next year, even as I was regaining my strength, writing about all the things that frustrated me (had plenty to pick from!) and I ended up writing an entire CD of humorous songs about surviving chronic illness. That CD went on to be played by a lot of radio stations and reaching a lot of other chronically ill patients. I got to pay it forward with the laughter. I took the gift Saralyn gave me and passed it on to my fellow patients.

And here we all are together, faced with a global challenge this time.
And I've been writing again. About wearing sweatpants, about trying to use Zoom, about cutting my husband's hair.

You don't need to be a professional to pick up a pen or create.
I encourage everyone to write, even if it's just for yourself. Or make something. Or find some "dad jokes" and get up and tell them to your family. Express yourself! Sometimes the best way to cheer yourself is to cheer someone else.




Wednesday, October 14, 2015

Selena Gomez "comes out" as a lupus patient

Lupus is still a fairly misunderstood illness. I still get strange questions about it, years after I was first diagnosed. Of course, I have to remember that when i was diagnosed, i'd never even heard the word "lupus" myself.

When a celebrity opens up about having an illness, it can potentially help bring more awareness and even more compassion to the illness, and more importantly, better understanding.

"Coming out" as a celebrity with a chronic illness is risky. There's the fear that people won't want to hire you for shows/ movies anymore because you might cancel the show/ perform poorly because you're sick. Decades ago, when celebrities developed cancer, they were completely hush-hush about it. They would find a doctor who would treat them in a remote place, under complete secrecy, and neither the doctor nor the celebrity would ever speak of it. Show biz is, indeed, a competitive business. No one wanted to jeopardize their career by admitting to not being in perfect health and able to work at the drop of a hat.

Speaking of hats, hats off to Selenaa Gomez, for talking openly about her recent diagnosis of lupus.
http://tinyurl.com/pwwrfv7

Wednesday, November 26, 2014

Lupus and General Health chat Tues. 12/2 5:30pmEastern

Tuesday, December 2nd
5:30 pm to 6:30 pm Eastern time 
Hospital for Special Surgery and S.L.E. Lupus Foundation present:
Lupus & General Health Chat
Hosted on the HSS Facebook page:
Attendees will be able to ask lupus-related questions and get answers from a panel of experts, which includes rheumatologists, dermatologists, and social workers.



Wednesday, October 29, 2014

Day 35: complacency, vanity

Day 35 on nutrition plan, and still feeling good!
Already hit one of my goals for this 30 days (going 30 days at a time), which was to slim an inch off my waist. I'm only 5 days into this 30 days...

So rather than set another "inches" goal, because I can't really control where/ when/ how my body decides to reshape itself (the first 30 days, my waist stayed the same, but my fanny shrank), I'm just going to set a goal to stay on the plan, and off sugar and carbonation as well (those aren't on the plan.... but they are my biggest saboteurs!).

I ran out of mental energy today, so instead of writing a song about today's thought, I have a song snippet I wrote a week or so ago about the struggle between choosing between surviving and looking good. Ever notice that cancer patients look fine- until they start getting treatment?! Yeah, same with lupus.

http://youtu.be/f5xUqoeMDIs



Carla Ulbrich
The Singing Patient
http://www.thesingingpatient.com

Saturday, October 25, 2014

Day 31: the visitor has returned

I was on a conference call the other day (group call where we discuss how we're doing on the nutrition plan) and they got to me and I, forgetting/ not caring there were strangers and dudes on the call,, said, well, I got my period!

Thing is, for me, with lupus, having my period in a normal fashion is a good thing. If it disappears, I'm in trouble, and if it comes back and stays for 6 solid weeks, obviously I'm also in trouble. Been in both those scenarios more than once. So, when it's close to normal, even though I don't *enjoy* it, I'm kind of relieved, perhaps even a tad grateful.

Well, maybe you weren't on the call, but there's no reason you all can't experience a tad of "What is wrong with you, Carla?'" to! Here's today's vlog and song:

http://youtu.be/sxg2HMcmh1g

Cheers!
Carla
http://www.thesingingpatient.com

Day 30! Functional Medicine

30 days at a time, this plan. And this marks the end of my first 30 days!

Recap of what's happened in the last 30 days:

- vastly reduced shoulder discomfort
- 3.5 pounds gone (with no exercise)
- 3 inches off hips!
- stopped caffeine without trying
- better sleep
- impoved energy
-numerous ridiculous songs :)
plan for the next 30 days:
drop another 1-2 inches from hips or waist
start exercising again: experiment! (tap?)
set up dental procedure
write more ridiculous songs

long-term goals:
feel great every day
hit my ideal weight and stabilize there
have the energy to do whatever i decide to do
remain a ridiculous person
write even more ridiculous songs
help anyone who asks

Also, I talk a bit about functional medicine, alternative medicine, looking for the root cause of illness.

http://youtu.be/Vim5OXwW5eM?list=UURC9gl53K4UW7qQVP5bAPjw


See you next time- Carla
http://www.thesingingpatient.com

Monday, October 13, 2014

Day 19

Day 19: The last of the 4 cleanse days for this month!
And sometimes you just have to have a sleepathon.
And by the way, for those keeping score, I didn't fart today!
(Joe, does that count as not mentioning farts on my blog?)



Carla
http://www.thesingingpatient.com

Tuesday, October 7, 2014

Day 13: Minor Breakthrough?


I felt good today! I mean, actually good.
I woke up rested.
I got a lot done.
I was in a good mood.
I went for a brisk walk!
Who is this person?!
Let's hope there are more days like this to come!

Meanwhile, someone somewhere could find a reason to write a blues song about this, so here it is (after a bit of rambling of course, and my showing you my giant tub of unfinished song ideas):



Carla
http://www.thesingingpatient.com
http://www.facebook.com/carla

Monday, October 6, 2014

day 12: sleepathon!

Day 12 turned out to be "recover from day 11 day."

Whenever I see people running 5ks or marathons for lupus I think wow- the only way most lupus patients could participate would be if they changed it to a sleepathon. I'd have been a serious contender today.

Of course I do believe it's possible to get well enough to run a marathon (if I wanted to), but I am not there yet- that's for sure!  But I'm working on it. And some days working on getting healthy means doing less.

I had a strange episode when I was 17 where for 3 days I kept falling asleep. On the couch, even behind the wheel. I was getting a normal night's rest, but I just kept falling asleep. After 3 days, it passed, and it never happened again. I will never know what that was about, but that is how I felt today.

My sophomore year of college, I was constantly falling asleep as well. On the couch in one of the classrooms (I think I slept through someone's entire music theory class on that couch), in the hallway with my books under my head. Sometime during my 2nd semester, my piano teacher asked me "We've been wondering- are you on drugs?" What?! We?!? The whole faculty is sitting around gossiping about me? I was, I'm sure, visibly shocked and offended, and assured him that was not the case. So then he suggested I get some multivitamins.

I had my wisdom teeth extracted right before that fall semester I don't think I've ever recovered from it. I've never been quite the same since. So once I'm feeling stronger, I'm going to look into possibly getting those pockets looked into and maybe filled in (where my wisdom used be). But no oral surgery right now. Right now, building health.




carla

http://www.thesingingpatient.com
http://www.facebook.com/carla

Saturday, October 4, 2014

Wednesday, October 16, 2013

What Advice Would You Give Someone Who's Just Been Diagnosed?

Yesterday, I was asked by a radio host what advice I would give someone who had just been diagnosed. Wow, where do you start?

Well I certainly know what NOT to say (By now, you've all heard my "Top 10 Annoying Things to Say to Someone Who's Just Been Diagnosed." No? it's here: http://youtu.be/NEL6puqRd-I ).

I think I said something about "you have more choices than drugs" and "you can make a difference in your own health" and maybe even "remember to schedule in something fun once a week" and to "take care of your emotional side, because there is a body-mind connection." Something like that. I don't remember. I'm rather "in the moment" when doing radio shows, so I don't usually remember anything I said.

I've not been asked that question on the spot before. Or maybe I have and I said something different.

Anyway, I've been in the process over the last month of creating a "Top tips for people with chronic illness" list, and I would love your input, especially if you yourself have a chronic illness. What do you appreciate hearing, or what would you tell another patient that might help them? Please share your thoughts in the comments section!

Patients helping patients- doesn't get much more therapeutic than that. No one knows like someone who's been there. Thanks for your input! Together, we can make a difference.

Carla

Carla Ulbrich
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient
http://www.youtube.com/user/carlaulbrich
http://www.linkedin.com/in/carlaulbrich

Sunday, January 27, 2013

Resources for people with lupus

Nobody can truly understand what you're going through the way another person with lupus does. Support groups, the good ones anyway, can be a great place to share without judgment, and to hear what's working for others. You don't have to figure this out all on your own.

This is courtesy of the Lupus Foundation of America, www.lupus.org.


to your health-
Carla
Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.twitter.com/singingpatient
www.linkedin.com/in/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

http://tinyurl.com/348hroc- Carla's book

Wednesday, December 19, 2012

Come Back When You're Sicker

Question:
I've had dry eyes for 12 years, constant phlegm in my throat for 3 1/2 years, dry mouth for 6 months.  7 doctors over 3 years can't figure out the phlegm problem. When the dry mouth came along 6 months ago, the internet led me to Sjogrens.  My primary doctor said, "Maybe. But if it is, there is nothing we can do but manage the symptoms."

At my annual eye appt., I told my eye dr. about the phlegm and dry mouth (he of course already knew about the dry eyes) and he said we need blood tests: "sounds like Sjogrens but we need to find out if it's primary or secondary."  Had the blood tests last week.  Can't get into a Rheumatoligist until the end of January.  In looking at the blood tests I still have no idea what I have.

ANA screen is positive and speckled (1:40). Rheumatoid Factor: 11 - says less than 14 is good.  Sjogren's Antibody (SS-A): negative.  Sjogren's Antibody (SS-B): negative. SED RATE: 2.  It sounds like Sjogrens but the blood test says no.  I read that of 11 Lupus symptoms and you need at least 4 to probably have lupus.  I only have the positive ANA. None of the other symptoms.  My middle right hand finger has been hurting at the bottom joint for a week and a half but I don't know if I injured it or if it's arthritis coming on.  That is the only thing close to maybe having 2 Lupus symptoms instead of just the ANA. I am baffled.  Any ideas?


Hello!
Thanks for writing.
It sounds like your symptoms are not severe enough yet that they have developed into an easily-diagnosed disease.

That's bad news in that it's hard for you to get an answer but good news in that you still have pretty good health and quality of life, it sounds. Doctors often tell someone like you "come back when you're sicker" so it's easier to diagnose. How about instead, if you don't get sicker and just get all better?

It definitely sounds like to me that something is "off" and you are getting warning signs from your body that you are on the wrong track, either with stress, or your eating habits, environmental allergy, or something else in your life that needs to change. It's causing your body distress and the symptoms are its way of asking you to get back in balance.

First I would look for food allergies, or other allergies, because of the phlegm.
The first thought that came into my mind when I read your message was "Is she eating dairy regularly?" Dairy can cause a lot of phlegm. Other food allergens are gluten, soy, eggs, nuts, corn, yeast.

Have a look at this article from Dr. Mark Hyman and see if it resonates with you.
http://drhyman.com/blog/2012/02/22/how-hidden-food-sensitivities-make-you-fat/



Another progressive, nutrition oriented MD is Dr. Joel Fuhrman (www.drfuhrman.com). He has had numerous success stories with healing "incurable" "chronic" diseases like Psoriasis and Lupus (and probably Sjogrens too- many people with lupus also have Sjogrens diagnosis, including me). I have reversed my bad blood tests and vastly improved my health by eating gluten-free and dairy-free and getting rid of nutrasweet (asparatame, diet coke) and eating a lot more plant food.

You don't have to slide downhill. You don't have to end up witha  disease that you can just "manage." You don't have to live with phlegm in your throat for the rest of your life. You can nip this in the bud and not have it turn into Sjogren's, or any other autoimmune disease.

well wishes-

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs

www.linkedin.com/in/carlaulbrich
www.twitter.com/singingpatient

"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 Carla's book! http://tinyurl.com/348hroc

Thursday, December 13, 2012

Growing Back that Gorgeous Head of Hair

A friend wrote me to ask my advice about her thinning hair. As you can imagine, losing your hair is never easy, and when you're a woman is devastating. I've lost my hair three times now during lupus attacks; sometimes most of it, sometimes just 2/3 of it. It's a big problem with lupus patients (most of whom are women, by the way), so I wanted to share our conversation with all of you.


Hi Carla,
Hope all is well with you and Joe.

After seeing my rheumatologist, he wants to put me on Plaquenil, mostly because I complained of recent onset of thinning/loss of hair which is freaking me out. But then I read about Plaquenil and its side effects and really freaked out. Would appreciate any insight if you have it if you've ever been on this drug and any comments you care to share.

My dermatologist had suggested Rogaine but my rheum said I'll be stuck on it for life (and it's expensive) and it only works "less than 60% of the time" according to its own website. He suggested my complex autoimmune disease along with my hypothyroidism (which is being monitored and medicated) are most likely the cause (and genetics, of course, like duh….).

Any insight?
Best,
(name deleted)


hi there-

Good to hear from you. Yes, I have a little experience with placquenil and a lot of experience with hair loss (and, happy to say, hair regrowth).

Placquenil. You probably know this but it's an antimalarial and they don't know why it works on lupus, but it does help with skin and joint problems, so they use it. I was on it for about 6 months back in 1994, but because of the risk to eyesight (possible blindness) i just couldn't make myself stay on it. I had no problems with it during the time i was actually on it.

I have no knowledge about rogaine, but I'm not a fan of anything that I have to stay on for life.
especially with such a low success rate.

Is hair-thinning one of the side effects of your hypothyroidism and/ or meds for that?

If you're looking to improve your hair health, I would go at it from a nutritional angle rather than throwing drugs at it. Doctors in general only have 2 ideas: drugs and surgery. So, I'm not surprised he offered you drugs. He probably thinks that is his job: diagnose and prescribe.

Nutritionally, I'm a big fan of ground flaxseed. I put it on smoothies, on top of salads, in (dairy-free) yogurt. Flaxseed will most definitely make your hair grow, nice and healthy. I actually find organic flaxseed at my local stop n shop. Back when I was a serious classical guitar player, I used to eat jello because the gelatin made my nails strong. That would probably work on hair as well. It is not vegan. Gelatin is made from horses. Just FYI. Vitamin E is another skin/ hair/ nail- benefiting supplement. Seeing results with your hair can take up to 6 weeks, so it will take consistency and patience.

One other thought- have you ever done an elimination diet?
7 days with none of the top allergens in your diet?
gluten dairy, soy, eggs, corn, yeast, and peanuts. Some people are sensitive to soy, so you can also cut that out.

Food allergies are common with autoimmunity, and if you eliminate the offending foods, the autoimmunity quiets down, and as a result your hair health will improve as  your overall health improves. As long as I stay gluten-free and dairy-free, my lupus blood tests are negative and I have no headaches, no joint swelling, very few tendon problems (I think sometimes the dairy sneaks into my food when I eat away from home, and dairy causes my tendon problems). Eating allergy-free has improved my health and quality of life tremendously.

Here's an article by Dr Mark Hyman that I like very much- 9 steps to heal autoimmune disease:
http://drhyman.com/blog/conditions/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/

Hope some of this is helpful to you-
Happy Holidays!
Carla

Carla Ulbrich
The Singing Patient: Author, Humorous Songwriter and Entertainer
_____________
www.thesingingpatient.com- performance  info and dates
www.youtube.com/user/carlaulbrich - funny songs
www.linkedin.com/in/carlaulbrich
www.twitter.com/singingpatient
get Carla's book! http://tinyurl.com/348hroc


Sunday, December 9, 2012

Lupus and Marriage

Dear Carla,

        My Girlfriend has been suffering from Lupus (SLE) for 3 years and she is about 18 years old.

        She was suffering from severe joint pain for a year. She has recovered much over the past 3 months, and now she is able to stand on her legs but can't walk.

        I just want to know: can a patient suffering from SLE get married?  Are there any problems that might occur in her married life in the futute? Or are there any problems caused to her reproductive system? Thank you.

Hello,
and thank you for writing in.
I'm sorry to hear of the troubles your girlfriend is having.

Can someone with SLE get married?
Well, yes, anyone with a disability can get married.

Will there possibly be issues that come up that would not be there if the SLE were not there?
Yes. For starters, someone with a chronic painful disease is going to need support. Emotional and sometimes physical help doing things. You may want to consider visiting some lupus support groups if there are any in your area, so you can talk to some other spouses of people with lupus to find out how they handle being the partner of someone with a chronic illness.

What about sex? You didn't ask that specifically, but it is part of marriage, normally. Being in pain and exhausted can lower the desire. And also there can be discomfort for the woman that can be helped by a personal lubricant (for example, KY Jelly or Vagisil). Sorry if that's embarrassing, but it's an important issue.

Finally, regarding reproductive issues. It is possible to have children if you have lupus, but it is riskier. There are more miscarriages in women with lupus, and also sometimes being pregnant can cause the lupus to get worse. But there are women who have lupus who have successfully and joyfully had children. (Specifically, author Sara Gorman and blogger Christine Miserandino are both lupus patients who have successfully and happily had children after developing lupus themselves).

Because lupus causes fatigue, it would probably be wise for her to either have a job or to have children, but having both is probably too much stress to have and also to be healthy. Lupus is aggravated by stress.

I'm not clear as to whether she's being treated at all- is she on any medication? Is she under a doctor's care? Lupus doesn't just get better all on its own like the flu or a cold. It's a serious matter and she need to see a doctor regularly to get blood tests to make sure her internal organs are okay.

Finally, I want to encourage both of you to look into some dietary changes for her. Because it sounds like there hasn't been as much improvement as you'd like (she can't walk still), it would be worth trying an elimination diet for one week: have absolutely no gluten (nothing with any wheat or oats or rye) and no dairy (milk, butter, cheese, ice cream, yogurt). On day 8, eat a normal amount of gluten and dairy, and see how it affects you. If she feels better on days 3,4,5,6,7 and worse on day 8 and 9, you will know you can improve her health with this diet change. Being gluten-free and dairy-free has dramatically improved my health.

I've got a lot of information about the things I've done to improve my own health since being diagnosed with lupus in 1993. You can either read it in my book http://tinyurl.com/348hroc , or have a look at my blog http://lupusandhumor.blogspot.com/ .

I wish you both all the best-
Carla

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com - performance  info and dates

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

www.linkedin.com/in/carlaulbrich

www.twitter.com/singingpatient

"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 Carla's book! http://tinyurl.com/348hroc

Tuesday, November 27, 2012

Lupus and sleep

Question:
Does lupus cause extreme need for sleep?

{This was so succinct I did not know whether they were asking on their own behalf and they were just too tired to type anything further... or whether they had a friend or relative show sleeps a lot and they were either concerned or suspicious. So I answered it assuming they were asking on their own behalf.}.
 
Hello-

Thanks for your question.
Yes lupus causes fatigue, sometimes extreme fatigue, and definitely requires that you get plenty of sleep, more sleep than you normally would, especially when the lupus is "flared up" (really active).

If you can get the lupus under control, you may not need quite the large amounts of sleep you do when you're flared up. But it is very important to get as much sleep as you need when you have lupus.


Allow me to also point out there is a trap of sleeping to avoid things, because you're depressed. Only you can really know when you've crossed the line between taking care of yourself and avoiding life.


(Thoughts on sleep, anyone? Comment below!)

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com - performance  info and dates

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

www.linkedin.com/in/carlaulbrich

www.twitter.com/singingpatient

"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 Carla's book! http://tinyurl.com/348hroc

Monday, March 19, 2012

Food Allergies Part One

A long time ago, I read a chapter in a big gray booked simply titled "Alternative Medicine."
It's a fantastic book; it has info on all kinds of ailments and their suggested methods of alternative (non-pharmaceutical) treatments listed for each.



Of course, I turned right to the chapter (well, page) on lupus. One thing that jumped out at me was the claim that 100% of lupus patients have food allergies. ONE HUNDRED PERCENT? That makes the odds of my having food allergies, well, 100%.

So how was I going to find out what my food allergies were?
I did some poking around, in slow motion. reading and phone calls- this was 1994, so there was no internet to speak of. And I lived in South Carolina- not the bastion of progressive thought. What takes you 10 minutes to find information on nowadays took me weeks and persistence in 1994, if I could find anything at all.

I ended up getting an ELISA blood test from an MD who did complementary medicine. That's what we were calling it in 1994. You could also call it integrative, alternative, holistic, or functional medicine. Or, if you're really closed-minded, or enjoy being and staying sick, or have all your money invested in pharmaceuticals, you call it quackery.

There are a lot of opinions out there about food allergies, and they all contradict each other. (Why should any information that could be so helpful be straightforward and simple?). Over this series of posts (I don't know how many there will be yet!), I'll explore food allergy symptoms, most common food allergies, conflicting opinions on food allergies, and methods of testing for food allergies. The perhaps  I'll reveal my own food allergies in case you want to bake me something toxic in an effort to bring about my early demise.

Stay tuned, healthy people- and all of you who are on the journey to reclaiming your health.

Carla


*** If you or someone you know would like to live healthier, happier, freer life, e mail me for a free one-hour consultation: carla@thesingingpatient.com . I am a holistic health coach! Talk to someone who has been there and is living well now. You've got nothing to lose, and everything to gain! Start living your best life. ***


Carla Ulbrich, The Singing Patient and Health Coach



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

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

Monday, August 1, 2011

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

Thursday, March 17, 2011

Thoughts on the new lupus drug, Benlysta

The lupus community is all abuzz over the release of a new drug designed specifically for lupus patients. Not a cure, by any means, but something that *might* help *some* patients reduce their need for steroids.

I voiced my concerns over this drug on my blog when I first heard about it. It is only effective in 42% of patients, which means it is only helping 7% more patients than a placebo (sugar pill). And considering how many times they can run trials and tweak numbers to achieve that result, it's probably no more effective in reality than a sugar pill, and waaaay the heck more expensive. And Lord knows what side effects it has (including death, if you want to call that a "side effect").

If Benlysta's promise is that it can reduce the need for steroids, well, so can lots of other things that are far less ricky and expensive. Like a gluten free diet, acupuncture, massage, eating lots more leafy greens and fruits, juice fasting, yoga. All those things are relatively inexpensive to do, have no risk, and they work.

Big Pharma saves lives, but it also takes lives.You know what's really weird? Lots of drugs actually cause the thing they treat. Prednisone- given to me to stop kidney failure- over the long term can cause kidney failure! Chemotherapy- given, among other things, to treat cancer- can cause cancer!

Thinking we can be restored to wholeness by just popping pills is the kind of stuff that comes from watching Alice in Wonderland too many times. "This one makes you smaller." "This one makes you happy."

How about "This one has limited effectiveness and costs $35,000 a year?"

Thank you, big pharma, for taking lupus seriously and putting our disease on the map so people will take us seriously. We appreciate the effort. If I get deathly ill again, I'll be taking me some prednisone to save my life. But currently I am well, and I got this way through a series of good choices.  I think I'll be sticking to my plan of actually building wellness via lifestyle and avoiding drugs unless I'm going into kidney failure.

Carla Ulbrich, The Singing Patient,
is the author of "How Can You *Not* Laugh at a Time Like This?"
Get Carla's Book at Amazon.com
www.thesingingpatient.com