The Definition of Health, and my quest to settle for nothing less

I think of health as a spectrum.On one end, you're dead. On the other, you're flourishing.

Anyone who's everhad a houseplant or a garden knows the difference between a dead plant and a live one, and also the difference between a plant that is doing OK and one that is flourishing.

The World Health Organization defines "health" as:
"a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity."

Let that soak in.
Not merely the absence of disease.
Complete well-being.

When we are diagnosed with a chronic illness, we are told to "accept" our illness and to settle for something far less than the WHO's definition of health. We are told by our doctors that such a dream is now unattainable for us. I have refused to believe this from Day 1. I do not and will not accept it.

I have tried all kinds of alternative medicine over my 21 years since being diagnosed. A lot of it has helped me tremendously, and I've been able to taper off all the lupus and blood pressure drugs, each of the 3 times I've had a flare. And my flares are not minor. They involve kidney failure, congestive heart failure, pleurisy, anemia, and even a stroke. Not mention hair loss, weight loss, fever, exhaustion, neuropathy and chronic pain. (OK I just mentioned those).

Our mainstream doctors are trained to treat us with only 2 tools: prescriptions and surgery. Yes, prescriptions such as prednisone are the reason I am still alive and able to sit here and type about anything at all. 50 years ago, lupus was a death sentence. So I definitely appreciate the existence of life-saving drugs, and I take them when I'm in trouble. I am NOT anti-drug.

However, long-term prescription use is *always* going to have consequences. And sometimes those consequences are very serious. And anyway, drugs can't get you to "flourishing." They can get you to the "not dead" zone, or even the "OK" zone, which is the best we're told top hope for. But being diagnosed in my early 20s, I wanted more than just getting by with "OK" for the next 40-60 years.
(Especially since "OK" seemed to mean, from the folks I saw at support groups back then, being 50-100 pounds overweight from the steroids, and thin to no hair. And in some cases, frequent surgeries to replace bones eaten by the steroids. How was this OK?).

Thus, my search for better answers all this time. I wish I could type up every single thing I've tried in one concise blog post, but we're talking 21 years of experiments on myself. And what works for one person doesn't always work for another.

However, there are 2 basic, sustainable habits I would recommend every lupus patient try:

- Qi Gong (also spelled chi gung). This is a deep-breathing, slow-moving Chinese art much like Tai Chi. Make sure you find a practitioner/ DVD that teaches healing chi gung, not warrior chi gung.

- diet modification (eliminating gluten, dairy, eggs, diet soda, sugar). This can be done on your own, or with a health coach, or setting up a pair or more of you to do it together. Or you can do what I did, and get a system that makes it very easy. Here is the system I've been using for the last 63 days. It's both really nutritious *and* it detoxes your system. It has completely eliminated my need for narcotics and I have slimmed down by 6 pounds with no exercise. I'm really pleased with this.

http://www.isagenix.com/en-US/Isamovie#cat=weightLoss&vid=9jeIL82Of9I

Cheers and good health!

Carla
The Singing Patient
carla@thesingingpatient.com

http://www.thesingingpatient.com

Exercise, Pacing yourself, and Richard Simmons

I committed myself last summer to getting serious about regular exercise, and getting stronger. I had to be patient with myself, and let myself take breaks, work incrementally, and listen to my body. And I love how I feel after a great workout.

Unfortunately, when I've been in the middle of a lupus flare, fast-paced, sweaty aerobic workouts were not an option. I missed them a lot. They were a great stress reliever, fun, and of course good for me.

Pushing too hard too fast can lead to worse than sore muscles or injury; it could set off a lupus flare for me, or leave me in fibromyalgia pain for several days.

One other consideration: I also had to pick a workout I like.
I love music. I love to dance.  So one of my "when I'm better" fantasies was to be able to again do the aerobics record (yes, record! an LP!) that I used to do when I was 15. I loved that record. I forget the title of it, but it was Joanie Greggains and it had all kind of great music on it: Hall and Oates, BeeGees, Village People. Not on my top 10 favorite albums of all time, but great music for working out. And way better than that boring drum-synthesizer non-music track on most music videos these days.

Of course, after I had a stroke in 2002, I couldn't even get up and down one stair, never mind do aerobics. So back then I started really small. I got in the pool and kicked around. Then when I could get up and down the one stair to the outdoors by myself, I went for short walks. To the stop sign and back. A few yards further each day, with my cane, never far from the house, just in case I fell. I worked on it a little every day. Eventually I could climb stairs and get around normally, without a cane.

Fast forward about 2 years. I found a copy of that Joanie record on ebay and Joe transferred it to CD for me. But there was no way I could do the workout. I mean I was literally crawling up the stairs on all fours at that time. How was I ever going to be doing jumping jacks, leg lifts, and running in place? I tried it anyway, in a moment of pure wishful thinking/ delusion, but I just could not get through it and I ended up with a big migraine.

So I started out just walking. Brisk a walk as I could do, which for me was one 20 minute mile. I know that's not fast, but that's what I could do. Me and my ipod, with David Lee Roth singing "Just a Gigolo," looping around the neighborhood. After I eliminated dairy from my diet, I had more energy and I threw in short little passages of jogging. Bolstered by my newfound energy, I decided to try the Denise Austin "Fat Burning Blast" 25-minute workout that I used to do (on VHS). Aimed too high again. Needed percocet that night. Back to the walk/ jogs.

Then I remembered Richard Simmons. His videos don't have a lot of jumping around, and that jumping was what always aggravates my system. So I got his Disco video (great tunes!). And at first, I just did one song. Because it takes me time to learn all the moves, and I had no stamina. Then two songs. And after a couple months I could get through the entire workout.

After sweating with Richard all summer, I went back and did the Denise Austin video and now I could handle it just fine! So, I added in a Dancing with the Stars video to the mix. Wow, that was hard. I had to stop the video and catch my breath a few times. But no pain. It took a while, but now I can get through the first 2 dances (that's 30 minutes of swing and jive) without much trouble. So... it was time for the ultimate test: Joanie Greggains! I put on the CD, and Yes! I did it! And I felt fine. It was challenging, but I did not need percocet or any other remedy afterwards.

People whose lupus is not under control have to be even more gentle and more careful. It's important to move. It's important to be wise. It's also important to hope and to try.

And it was patience, persistence, listening to my body, and Richard Simmons and his totally doable workouts with fun songs that made it doable for me. Dare to dream big, but start small and check in with yourself.

Yours in 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

The ANA Test and SLE lupus

The ANA test. It is the antinuclear antibody test. Though it is used to help diagnose someone with lupus, it is not a definitive "lupus test." Read below of an e mail I received from someone who is trying to get a definite lupus diagnosis (a very frustrating place to be), and has put a lot of stock in getting a positive ANA test result (positive ANA test result would go in the "might have lupus" column, but negative ANA result does not rule lupus out). I have added in explanations for all the abbreviations, since I know now everyone who reads this knows the medical lingo.

 
Dear Carla,

I have been being treated for SLE {lupus}/MTCD {Multiple connective tissue disorder } for about 4 yrs. I've had DVT {deep vein thrombosis}, PAH {Pulmonary arterial hypertension}, spilling protein, Anemia, low white blood cells, low RBC {red blood count}, low hemocrit {iron deficiency}, low vitamin D, high CRP {C-reactive protein, indicates inflammation}, c3/c4 complements {protein linked with immune activity} mildly elevated, high sed rates {indicates inflammation} in the hundreds {that is extremely high}, etc. - all the symptoms you can imagine, but always a negative ANA. 

The entire time I've been on many medications from prednisone, methotrexate, to now placquenil for the last 2-3 years about. My Dr. has ordered another ANA panel. I just want a definite answer. I don't believe any one can cause a ANA positive test but I do believe my medicine probably controls it and my flares. So I want a true diagnosis. Should I stop my medicine before taking this test again? wait till I'm in a bad flare? Is having the test done on one of my bad days enough, or should I sit in the sun as crazy as it sounded? No, I don't want to be sick either! God knows I've suffered enough! But I just want a real answer. It seems to me that I'm tittering and the Dr. is not sure what I have. If doing something will make me ill but give serenity in knowing the truth I need to know, I'm going out of my mind! Thank you for listening and hopefully you can give me some insight.
- name withheld

Hi (name withheld)-
I know how frustrating it is to not have a definite diagnosis.
It took me 2 years of visiting bunches of doctors before I was finally diagnosed with lupus.
I did have positive ANA at the time. But here's the thing about that ANA test. It is not a perfect, specific yes/ no "lupus test."

You can have a positive ANA and *not* have lupus. You can have a negative ANA and yes, have lupus. The fact that there is not one test for lupus is one of the reasons it is so hard to diagnose. Lupus is diagnosed with a combination of tests and symptoms (past and present). One big red flag is inflammation and you certainly seem to have that. You may find this article helpful: http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

I had severe lupus and have been able to turn it around with diet and lifestyle changes. In fact, my ANA tests are now negative.

I would like to strongly encourage you to NOT try to make yourself sicker so you can get a definite answer. I understand why you want that answer once and for all, but I'm not sure you can get sick enough to get the answers you want.

Whenever I'm being told to go get a test, I always want to know what will change once the results come back? (Some tests are just unnecessary and expensive). What if you go sit in the sun, stop your medications, send yourself into organ failure and your ANA test still comes out negative? And what if it comes out positive? Well best case scenario is now you are very very sick and they still may hesitate to call it lupus. For some reason, they just don't like to hand out that diagnosis. But if they did call it lupus the only thing that would change is your having a label for it. The medications would be exactly the same.

I understand it's frustrating. I truly do. You are not alone. It routinely takes people (mostly women, mostly being told they are crazy or hypochondriacs while they are suffering) 2-5 years to get diagnosed with something like lupus. I was so frustrated by my chasing a diagnosis for 2 years that I just broke down and desperately prayed to God for a correct diagnosis. I was diagnosed the next day.

My suggestions to you (besides trying a desperate plea to God) is to just assume you have lupus, or something autoimmune and serious, or MCTD which is in my opinion lupus by another name. They are treating you for lupus, judging by the drugs they are giving you.

Instead of trying to get sick enough to finally get that answer you deserve, consider turning it around and thinking about how to get healthy again, reclaiming your health and leaving all this medical mess behind you. That may sounds crazy, but it's possible. If you'd like to read a bit about more about what I do to stay healthy, here is my blog http://lupusandhumor.blogspot.com/

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

guest post: helpful tips on living with lupus

Today we have a guest post from author and lupus veteran (26 years and counting!) Mida Giragosian. I'm always interested in the insights of people who have lived with lupus (or any disease) for a long time. 26 years with a chronic illness will most certainly teach you something.

Here is her post:

Hi, my name is Mida Giragosian.

I was diagnosed with Lupus at the age of 21, and now I’m 47. Yes, I had a lot of life-changing problems in between those years, but now I look, feel, and sound better. We can all help each other get through hard times. I lived by these tips:

·      Live by FAITH, one day at a time

·      Write down things that make you happy. The list can motivate you every time you look at it

·      Always dress up as if you’re going to a party. If you look good, you feel good
More tips can be found in my book, but it is most important to wake up every day and to remind yourself: I WILL OVERCOME. Remember that everyday is a blessing, and that your disease does not define YOU!

For more information you can visit: www.youwillovercomethebook.com
Find us on Facebook: https://www.facebook.com/YourWillOvercome

What are your thoughts on these tips? And if you were to boil down your own lupus/ wellness wisdom to a few sentences, what advice you would give to other people dealing with lupus? What helpful tips would you offer them?

Leave your comments below!

'Til next post-

 Carla

Carla Ulbrich

The Singing Patient - humorous speaker, songwriter, and author

www.thesingingpatient.com

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

Finding Support

When you're feeling lousy, it can be hard to do something like get up and ask for - or even look for- help. I have been there. But I want you to know things can get better.
They don't usually get better all by themselves, though. It does take some work.
And I know it can seem hopeless, and endless at times.

But it really can get a whole lot better. It has for me. I was so sick I had a stroke and kidney failure, congestive heart failure, anemia, the whole 9 yards. I am now married, got my hair back, kept my kidneys (they are functioning normally), got full function of my hand back, and I'm happy.
I work out, teach guitar, wrote a book, I travel, I perform comedy-music shows, I go out and have fun with friends. I can even get an "A" on dance dance revolution. In fact, sometimes I'm doing so well, my lab tests turn up completely normal.

You would never know I had lupus if I weren't sitting here typing about it.

I say all that not to brag, but to let you know there is hope.

But none of us get better all on our own. We all need help, including and especially emotional support.

Not everyone is fortunate enough to have a lupus support group in their town. But there are some other resources.

There are lots of great chat rooms on the web, some of them specific to lupus. I like this one (though I haven't been on it for a while):
http://forum.wehavelupus.com/forum.php

 And this one seems quite active:
http://chronicbabeclub.ning.com/

This one has an active lupus section, but also sections for all kinds of other illnesses, and over 94,000 members:
http://www.healingwell.com/lupus/

Of course, meeting face to face is even better, if you're feeling up to leaving the house.
Start with the Lupus Foundation of America (LFA):
http://tinyurl.com/45gzkvq

If there aren't any chapters of the lupus foundation in your area, there may be some meetup groups. Go here and enter your zip code (Some groups cost a few dollars per meetup; some don't): http://meetup.com/

Sometimes there is a support group at your local hospital. Open up your options by attending groups for any autoimmune disease.

Additionally, when you're surfing around on the internet late at night lonely, bored, or in pain, there are a number of lupus blogs out there you can read (including mine) by bloggers who post about their journey. You can read, leave comments, or - if feeling ambitious- start your own blog to vent feelings and ask readers to interact.

This is the lupus foundation's blog, but if you look along the right column, there is a list of links to a bunch of blogs written by lupus patients.
http://lfa-inc.blogspot.com/

This is my blog:
http://lupusandhumor.blogspot.com/

Carla
~~~~~~~~~~~
Carla Ulbrich, The Singing Patient, is the author of "How Can You *Not* Laugh at a Time Like This? Reclaim Your Health with Humor, Creativity and Grit"
http://www.thesingingpatient.com
http://tinyurl.com/4j8qfc4