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

how to help a friend who has a chronic illness

	Dear Carla, I have a female co worker who has been recently been diagnosed with lupus. She is due back at work on Monday. She is one of those people you would do almost anything for. Do you have any suggestions to offer emotional support? She is married and has 3 kids, which must be a drain right there. Beyond emotional support, is there anything else do you think that can be done to help? thank you!! Hi - What a wonderful question. I'm pleased for your friend that you have the desire to help. The first question to ask yourself is: What are you good at? And what are you comfortable doing? For example: sitting and listening, making small talk about light subjects, running errands, cooking, laundry, cleaning, dog-walking, babysitting? Going to doctor appointments together? The household tasks are hard to keep up with when you are ill, and especially if you are using what energy you have to go to work- and then you come home to children who need you. So, I would suggest thinking about what you can offer that you can follow through on, then ask your friend if you can help with that. If she says "no thanks" then just let her know if she thinks of some way you can be helpful, please ask. We can be proud, we patients, and it takes a while sometimes to learn to accept help. But maybe she'll be receptive right away. Thanks on behalf of all of us who have been there for viewing her with compassion and trying to find a way to be supportive. Carla Ulbrich The Singing Patient http://www.thesingingpatient.com Everyone else- when you have been sick (with anything, even a common cold, but especially if you've had a serious and/ or chronic illness), what did you wish people would do or say for you? What kind of help did you want? Please comment! I'm very interested in hearing, because I think it's different for everyone.

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

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

Sharing Your Experience, Strength and Hope with Others

I'm a contributor to the website Allexperts.com on the topic of lupus.
I frequently get questions from people asking me to diagnose them- they send me all their lab numbers and want me to tell them whether I think they have lupus.

I guess they figure allexperts.com is manned with MDs or lab techs who are answering these questions in their free (ha!) time, but no, it's usually just folks like me, a fellow patient with a few more years' experience.

And even if I were an MD, I don't think I would diagnose someone over the internet without actually seeing them in person.

Still, I am really glad people reach out for help and write to the website, because it's so important not to just sit at home alone wondering if you're going to be OK while you're waiting for 3 months to see the specialist, in patient purgatory.

Most recently I was asked whether lupus was genetic and whether there were any new breakthrough tests. Here is my response (with name removed):

Hi-
Thank you for writing.
I'm so sorry for all that your family has endured.

There still isn't really definitive proof that lupus is genetic, but there definitely seems to be a connection to pregnancy and things flaring up.

Regarding tests- I do not know of any breakthrough tests.
But I can tell you if you ever do get definitively diagnosed with lupus, the medical solution will be to suppress your immune system. That will give you relief from symptoms, but as you can imagine, going through life with a suppressed immune system has its own set of problems that come with it.

I don't know about you, but when I developed lupus and my body was turning against itself I wanted to know why, for heaven's sake! All these tests and drugs and diagnoses- but no one could tell me WHY?

20 years later (I was diagnosed in 1993 after 2 years of going to doctors getting one different diagnosis after another until they finally looked for lupus), I have come to believe that my illness was caused by chronic stress and a diet lacking any real nutrition. I drank a lot of diet soda and rarely ate a fruit or vegetable, worked at a job I hated, 6 days a week, and had no time for fun or for doing what I wanted to do with my life. Not a recipe for well-being!

In 2002, I had 2 mini-strokes and was on 9 drugs plus chemo and transfusions to get the lupus problems under control. I am now symptom-free and drug-free. I live a life I love and I eat a lot more real food (I'm not perfect- I do eat chocolate!).

I was tested for delayed food allergies (most regular MDs will not take that seriously), and after I eliminated gluten, dairy, and nutrasweet, all my lupus tests went negative- as in no sign of disease.

So... I'm just one person, but I'm one very healthy person who used to be very sick. In fact I'm healthier than most of friends who don't have lupus! I do aerobics 3-5 times a week (Sweatin' to the Oldies never gets old!)- this is something I only dreamed about when I was hobbling around using a cane, unable to leave the house for a month because I couldn't get up and down the one stair to the outdoors. We can get better.

I wish you well, my friend, and send you love light and hope
Carla



Having read and answered dozens of these questions now, I think most people who write in are looking for hope and reassurance, and to know that someone cares.  If you have some of that to offer in any area and are willing to give an hour or so a week of your time, hop on over to allexperts.com and sign up to be an expert. Or join a local support group, or an online chat group, if you have an illness, and be there to help people who have just been diagnosed. You might be surprised what you have to offer a fellow human being who needs a little support.

Carla Ulbrich

The Singing Patient: Author, Humorous Songwriter and Entertainer

_____________

www.thesingingpatient.com- performance  info and dates
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 Carla's book! http://tinyurl.com/348hroc

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

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