A blog detailing the health and life of a Wegener's Granulomatosis
(Granulomatosis with Polyangiitis) patient.

Wednesday, February 27, 2008

Be Oyster Aware

"What did one Oyster say to the other Oyster?

If you think that I am any good at jokes, you have got to be kidding. Or else you don't know me very well. So you tell me what an oyster would say to another oyster. (I am shaking my head like Jake on Two and a half men, singing "men, men, men, men, manly men" and so forth.)

Actually, Gulf oysters are a serious subject if you are immuno-compromised like any one who has a chronic disease. The oysters are delicious, but please don't eat them raw or undercooked. They have a Vibrio vulnificus bacteria that can cause severe illness and/or death in someone at risk.

And anyone with a vasculitis disease especially Wegener's Granulomatosis is at risk. So if you are going down to the gulf coast for the warmth and the sun, remember to Be Oyster Aware!

Thursday, February 21, 2008

Nevada Earthquake

WELLS, NEVADA: About 0630 this morning a 6.3 earthquake was centered in Wells, Nevada. The area is about ten miles from Elko. Reports of the earthquake have been made in Utah and as far south as southern California.

Official reports are that NHP (Nevada Highway Patrol) has been called to help Elko police with damage in Wells.

Unofficial reports are that eight buildings are damaged and down. Also, there have been at least six after-shocks felt in Wells.

Update: Pictures

Sunday, February 17, 2008

Sunday Scribblings: Teeth

I have my father's teeth. When you look at my two front teeth, you will see a straight one and one tooth angled about 15 degrees to the back of my throat. I was self conscious of that tooth. I would put my thumb on the back of that tooth and press it forward. My father would tell me that if I did it every night that my tooth would straighten.

Of course, his tooth was much the same as mine. He had several of his bottom teeth zigzagged across his gums. Instead of zigzagging, my bottom tooth proudly stood in front of the other teeth.

When I had my first session with the dentist (about 14), the dentist filled about ten of my cavities. I had soft teeth just like my dad. And then he pulled out the proud bottom tooth.

"I can fix the front tooth," he told my dad. "But she would need braces and your insurance doesn't cover it."

My father told me if the tooth bothered me that I should just not smile. It was not going to get fixed.

Sometimes, I think that I was shy because of my teeth. I was unable to smile without being conscious of it. My two younger sisters had much better teeth. They could smile. They had boyfriends.

When I look in the mirror today, I don't even notice my front tooth. It just gives me some character. Even my dentist doesn't mention the tilt. I had to have six caps on my back teeth. He drilled out the old fillings. Some of these globbed up fillings had been in my mouth since I was fourteen.

And, his last look at my teeth? They look good, he told me. And for me? It is the first time in years that I haven't felt any pain in my mouth.

Thursday, February 14, 2008

Analysis of Wegener's Granulomatosis Responses to Rituximab: Current Evidence and Therapeutic Prospects.

Aouba A, Pagnoux C, Bienvenu B, Mahr A, Guillevin L.
Department of Internal Medicine and the French Vasculitis Study Group, Assistance Publique-Hôpitaux de Paris, Université Paris, 5-René-Descartes, Hôpital Cochin, 27, rue du faubourg Saint-Jacques, 75679, Paris Cedex 14, France, achille.aouba@wanadoo.fr.

Available data on small numbers of patients with refractory and/or relapsing Wegener's granulomatosis support very good overall outcomes with rituximab, an anti-CD20 biotherapy targeting B cells, in combination with ongoing immunosuppressants, apparently independently of antineutrophil cytoplasm antibody (ANCA) status.

Rest of the information is here.

My analysis: Another drug that will help WG patients.

Tuesday, February 12, 2008

Professor Randy Pausch's Last Lecture

http://www.oprah.com/videochannel/videochannel_player.jhtml?video=1178&category=31

This link for this video from Oprah's spirit collection was passed around by some of our WG friends. The professor has three children and is dying of pancreatic cancer.

It makes me glad that I have been given five years (and probably a lot more) because of the treatment for my disease.

I admit. This video made me cry.

Patient safety toolkits available online

Rockville, Md.—The Agency for Healthcare Research and Quality has 17 ways to help health care providers and patients enhance patient safety and reduce medical errors—The AHRQ Patient Safety Tools: Improving Safety at the Point of Care.

A total of 17 toolkits, produced under AHRQ's Partnerships in Implementing Patient Safety grant program, include a variety of evidence-based tools, including training materials, medication guides and checklists developed in the field. They are designed to help health care institutions, dentists, physicians, nurses, hospital managers and others provide (and consumers receive) safe, quality health care at various points in the health care process—in the hospital, the emergency department, the intensive care unit, outpatient settings and when patients are discharged from one setting to another.

The toolkits are free, publicly available and can be adapted to most health care settings. Materials range from checklists to help reconcile medications when patients are discharged from the hospital to processes that enhance effective communication among caregivers and with patients, and toolkits to help patients taking medications. Information also correlates with the Joint Commission's National Patient Safety Goals, which promote system-wide improvements in patient safety.

For a complete list of topic areas or to access toolkits online, log on to www.ahrq.gov/qual/pips .

My Analysis: Sufferers of chronic disease should look into these toolkits. Usually when WG patients leave the hospital (at least in my experience), they need help in reconciling medications, treatments, and limitations. It is helpful to both the patient and the caretaker. We had to come up with our own strategies.

Thursday, February 07, 2008

Gong Hei Fatt Choy


Happy New Year! I kinda like the idea of celebrating another New Year. I like the dragon dancers and the parades. The red envelopes of cash are quite good too. Despite the gloomy financial predictions of the markets, I do believe the "Year of the Rat" will be a good money year.

So hugs around. Have a great day!

Saturday, February 02, 2008

20 Foods To Snack On For Enhanced Productivity

Most people eat to lose weight, get healthy and build muscle. There are some people, however, who snack correctly in order to enhance their productivity. The following is a list of 20 foods you can eat to improve your eye-sight, improve your performance, energize your brain and keep your day on track

read more | digg story


Just a note from this blogster: Many of these foods are good for inflammatory diseases. I really enjoy avacados and olives. Another food that can help with inflammation and brain power is wild salmon. So eat for your health.