Wegener's Granulomatosis - Coping With Chronic Illness, Newly Diagnosed Patients

The following link as a video presentation forcoping with Wegener's Granulomatosis, a presentation by David Hellman, M.D.

Socializing for Introverts

My friend Lynn Raye Harris posted about socializing. Now she is an introvert. I know because we were good friends in Germany as liberal arts majors.

I am also an introvert. But, we did not have a hard time socializing. We did it the introvert way. Time: around noon or so. Place: Ramstein PX. Three or four of us would show up. We'd all get a coffee or two and then we would talk about the projects we were working on... or whatever took our fancy. It was great and we had fun.

Now if you are an extrovert, you would probably think that we are a pitiful small group for socializing. But, it was big enough for us. Introverts don't need to gladhand. Introverts need some time to be by themselves. Introverts get grouchy if they don't know anyone at the party.

I remember when I used to go to parties with my sisters. They were both extroverts. I would stand back and they would get more and more excited as they met people they DIDN't know. I couldn't understand them and they couldn't understand me.

A few years ago, I took a course about the difference between the different types of learners and mainly the extreme differences between extroverts and introverts. Extroverts need to bounce ideas off other people. They are the real socializers. Introverts need to bounce ideas off themselves. They need introspection time. Most people are bits of both. But there are some people like myself who are extreme. Yep, I am happiest when I am reading, writing, or dreaming. All of these are solitary occupations. (except for blogging... )

So when you see that woman or man hiding in the corner, don't feel bad for them. They are probably introverts, trying to catch their breaths... getting a little alone time.

Genetic Study for WG

This info appeared on another WG site today about the Canadian
research. I thought I'd copy it here to spread the news to a wider
audience. From Diana P.


Hi everyone,

I thought it might be time that I posted an ad for the study again!

Our researchers have identified two candidate genes (genes that seem
to be at a higher frequency in the WG population than the regular
gene pool), but in order to solidify this genetic basis we are in
need of more participants with a definite diagnosis of WG.

What we ask of our participants is:
-complete a consent form and questionnaire
-have a one-time blood draw

It's completely free to participate, and if you live outside of
Ontario, I will send you a 'blood kit' that includes the vials you'd
need for the draw, FedEx shipping materials and waybill, and customs
documents in order to get the biological specimen back into Canada.

If you're interested in participating, please send an email with "WG
genetic study" in the title to clinicalgenet.research@gmail.com
I'll respond as soon as possible!

I will be at the Vasculitis Foundation symposium in Rochester next
month to hand out kits for the study. I'll be at the Kahler Grand's
lobby each day of the symposium, so please keep your eyes out for me!
I'm very excited to get to meet whoever is able to come!

If you'd like to see what we're up to, follow this link.


Wishing you the best in health,

Alida Pokoradi
clinicalgenet.research@gmail.com

Hey advertisers! This one's for you

I am a creative writer. And, SocialSpark.com has just given me the opportunity to go full reign on my strongest talent. I can see myself sitting on a horse with a book in my hand. Read and be literate. Or I am wearing Levis for plus women. I can see the denim stretch to fit my well-shaped (huge) derriere.

Ummm... Here is an ad taken from the Budweiser Superbowl commercial. I am running through the brush at very slow speed with a Dalmatian training me. Then I become the next driver for the Budweiser team. Unless I fall down from exhaustion. (meds, ya know).

Well, let me be a little realistic here. I could be a poster girl for medications (imuran?) or a Weggie girl (Weggie is the shortened name of Wegeners) or as a reader.

So what are the products and advertisers that I would enjoy writing for? How about books. I love to read and write. I would love to be sponsored by Amazon.com, Borders, or Barnes and Noble. I spend enough in their stores that it would be nice if they would spread the love my way.

Or clothing? I spent a fortune at JC Penneys and UGGs last year. Cars? Subaru. I didn't even blink. We had a subaru in Germany. It was the best car for getting out of snow drifts. I want another one.

Technical or Computers? Ummm... Dell, Apple, I would love to write for any of the computer companies. My dirty little secret is that I was an electronics technician before I was a writer. I worked on huge computer systems in the Navy. After the Navy I repaired a telecommunications switch. And, later I repaired PCs in the 1990s. So I know a bit about the innards of a computer.

So I am open and ready to write for you. Advertisers... come on down to Socialspark and see what we can do for you. It has a lot of great writers there.

Clinical trial of Etanercept for Wegener's disease shows no benefit

A Johns Hopkins-led study designed to evaluate the ability of etanercept to maintain disease remissions in a serious autoimmune disorder has failed to show any benefit. Etanercept, also called Enbrel, is a common treatment for rheumatoid arthritis and other types of joint inflammation.

"We had hoped that this approach to the treatment of Wegener's granulomatosis would be useful in preventing disease relapses," says John H. Stone, M.D., associate professor of medicine, director of the Johns Hopkins Vasculitis Center, and lead investigator of the study published in the Jan. 27, 2005, issue of the New England Journal of Medicine.

The rest of this article is here.

In short, Etanercept does not work for WG patients.

My Analysis: Research is good in finding what works for chronic illness. Too bad that this medication will not help WG patients. However, it is another step towards some medication that can help us.

Mom on a Mission

I have been doing a little wandering throught the blogsphere lately and found this blog called Mom on a Mission. I was really impressed with the causes that she is involved in such as being a Kiva lender for small loans.

Her last post is about hunger in America. Now in Northern Nevada because of the rising gas and housing prices, we are seeing folks who are lining up at the food banks. They just don't have enough money to pay for food. Just last year, I was paying about sixty bucks for groceries that I pay about eighty to ninety bucks now. The milk is over four dollars a gallon.

Even our WG discussion group is beginning to talk about how hard it is to pay for medication and treatment. (This stuff is vital for our survival). So kudos to Mom on a Mission. And, check her out. You'll be glad you did.

Invitation to Helium

So to all my friends and readers, I have been placing a lot of my short stories and memoirs at a publishing site called Helium. This site is dedicated to helping new, intermediate, and expert writers through ratings and peer critiques. Peer critiques are done on the forums and not on the site.

I have been with this group since June 2007. So far I have submitted work for their weekly contests, which I did well. I have submitted work at their Marketplace, which to be honest, I didn't do so well. But, this site has tons of opportunities for the working writer.

So here is a the site if you would like to check it out:
Helium
Helium Marketplace

For those of you who are freelance or technical writers, Helium has opportunities in Science, Autos, Parenting and a host of other opportunities. Some folks on the Marketplace place have done very well. The contest subjects last one week. If you win the contest, you can make a nice chunk of change.

As for any site that promises to publish your work, read the TOS first.

Thanks for the post for the Vasculitis Foundation

I know that Sultana posted a very good post about the Vasculitis Foundation. And, I know that she told me that I didn't have to blog back, but I felt guilty about leaving it so long. Yea, I know... I realize that I have this need to finish all my obligations, even the little ones.

You see Sultana has a blog called Celebrating Life. Many of her posts are about her childhood in Malaysia and her life in Hungary. It is very interesting and very touching... I have lived in Japan so I have seen some of the restrictions placed on women in Asian countries.

She lives life very simply and happily. Go see her blog and you will see what I mean.

Earthquake Swarm Update

Last night we had five more earthquakes with the intensity of 1.0-2.0 or somewhere in that area. Even though the swarm seems to be quieting, many of the folks in the Mogul and Verdi area, which is northwest of Reno, are making preparations for the big one.

One family sleeps in their RV. According to the stores, flashlights, batteries, and first aid kits are not staying on the shelves. So far we are Okay.

Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry (Hardcover)

This book is about Julia Garrison, a Boston area woman, who has a stroke at work. Through her trials, her husband and family help her through the trials of having a stroke at only thirty-seven.

Her story is about the doctors, the nurses, the family, and her strength. At one point she was told that she would never walk again.

As a WG patient, I have dealt with a lot of doctors. Some have been very good. Others especially when I began my WG trek, thought I was crazy. Talking to a lot of people who have chronic illnesses, many of these stories have the same elements.

If you are interested in reading this book, it is on Amazon.com. It has turned into the book of the month for the WG discussion group.