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:

http://www.facebook.com/hspecialsurgery  

Attendees will be able to ask lupus-related questions and get answers from a panel of experts, which includes rheumatologists, dermatologists, and social workers.

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

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

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.thesingingpatient.com

www.bestpossibleme.com - health coaching

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

get the book! 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