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

Saturday, September 29, 2007

See Russia


Even though I was born in the 60's and remember the Cold War vividly, I would love to see Russia. Russia has a rich history that links it to Europe.

When I was learning German history, Russia had an important part to play in keeping Napoleon at bay. The Russian aristocracy were well known for their extravagant lifestyle. Even John Paul Jones after the American Revolution went to Russia to build a Navy there.

Evenso, this glittering past was built on the backs of the serfs... their descendants dwelled under Vladimir Lenin and Joseph Stalin.

Travel to Russia. See for yourself the rich heritage, the twelve time-zones, the cities, museums, and cathedrals. Frankly, I want to see St. Petersburg.


Peter the Great built the city to be a "window to Europe." It was the capital until after 1918. It is a magnificent haunting masterpiece reminiscent of Prague. The streets and the waterways contrast with the brooding majesty of the Winter palace.

This city is three century years old. It is definitely a monument to a past glory.

On a more personal note, my sister-in-law lived in St. Petersburg for several years as a student and as a museum guide. I have always thought that the people of Russia were white Caucasian, but she is definitely from Mongol heritage. She tries to explain the beauty of this city, but as Americans we have no idea what she means.

And, being from the American West, where everything is extremely new, how can she explain of buildings that are many century years old?

How can she explain about something that we can never understand unless we see it. Sigh.

Here is a service "Travel All Russia" who will help you travel to Russia, get visas, and provide tours to St. Petersburg and Moscow. Even though the Iron Curtain is down, it is still hard to get a visa to Russia. So this visa offer is worth it. They will also help you find a good airline to Russia.

Russia has the mystery of the east and the practicality of the west. It is worth seeing.

Dos vadanya!

Friday, September 28, 2007

The Honored Doctor

Anthony Fauci, tireless enemy of disease and advocate of medical research, is receiving another of his profession's highest awards

By Sue Anne Pressley Montes
Washington Post Staff Writer
Friday, September 28, 2007; Page B01

Routinely, his gray Toyota hybrid is parked from 6:30 a.m. until late at night outside Building 31 at the National Institutes of Health in Bethesda. Sometimes his colleagues leave notes on the windshield that say things like, "Go home. You're making me feel guilty."

But Anthony S. Fauci has made a career of long hours, exhaustive research and helping the public understand the health dangers stalking the planet. As director for 23 years of the National Institute of Allergy and Infectious Diseases at NIH, his milieu is the stuff that scares the daylights out of most people: bioterrorism, deadly flu epidemics, the enduring specter of AIDS.

The rest of this article is here.

My Thoughts: Dr. Fauci was the doctor that discovered a way to put WG in remission. Unfortunately for us and fortunately the world, his powerful intellect was diverted to AIDS research. We really wish (and hope) that he will come back to us soon. Maybe he will even cure us...

Kushiel's Chosen

By Jacqueline Carey
ISBN-13: 973-0-765-34504-2

Reminder: This book has adult themes. I do not recommend allowing children or teenagers to read this book.

Phebe, Kushiel's Chosen is back having adventures in the land of the gods. She has found that Melisandre (who escaped a traitor's death) is plotting against the new queen. Phebe goes to La Serenissima and discovers...

Well, I am not going to ruin the plot. Once again Carey has delivered. There is less "rod and weal" with the same amount of danger as the last book. Phebe has matured some and her Casseline escort also matures.

If you remember from the first book, he was a quite arrogant.

I give this book a 4.5 stars. I wasn't quite as gushy as the first book. But, it was a good read.

Changeling

By Yasmine Galenorn

ISBN: 978-0-425-21629-3

"Three sisters ridding the Otherworld of evil--one monster at a time."

This particular paranormal romance is about Delilah, a half-elf half-human were. She doesn't have one of those sexy strong were-animals. No, at the full-moon she becomes a cat. Meow!

This book is better than her first one--Witchling. I had a few laughs when Delilah gets caught in a sticker bush. The combination of mystery, romance, and paranormal added some interesting plotlines. I still think Galenorn needs too work on her characters (make them more loveable... maybe), but it was not a waste of time.

I will give this book 3.5 stars just because it will not stay in my library for a second or third read.

Insurance for your home

A home is the biggest investment that you can make. And in Nevada, you need to have insurance while you are buying or refinancing your home.

When my brother refinanced his home, he didn't realized that his home insurance did not go with the new mortgage. It was a mess. He had to spend a lot of time and quick talking to get his insurance back. The mortgage company had cancelled it. Because it was cancelled they tried to charge him more for the reinstatement. Yea, it was a mess. He eventually was able to prove that it was the fault of the mortgage company.

So you might want to check out this U.K. company that offers house insurance. They are an ethical company that offer the following:

1. One premium to pay
2. One renewal date to remember
3. One policy document to keep safe

If you need to make a claim, they promise to respond to your claim within twenty-four hours. They offer mix and match elements to help you find the right policy for you. Check them out.

Thursday, September 27, 2007

Methotrexate and Alcohol

When I was on methotrexate (MTX) my doctor gave me two pieces of advice: take folic acid every day and NEVER drink alcohol.

One of the major side-effects of MTX is liver inflammation. To make sure the patient on MTX has a healthy liver, the doctor orders blood tests to check liver proteins. When I was on MTX for a year, my liver proteins began to rise. I did not drink that entire year (in fact, I have not had alcohol since I was diagnosed). My doctor took me off MTX.

Some doctors do allow their patients to have alcohol in moderation (once a month or less). But because of the side-effects I would be very careful of any alcohol.

OK, I gave my warning.

Poetry Thursday: The Travelling Show

Autumn's End

Amber stone hung low in the sky;
Demeter’s harvest moon.
A lone bird stirs in early dusk
‘Mid pale and pearly blues.

Frost’s fingers touch the cooling earth
As Ra descends—a western
Death. Night lingers long as winter’s breath
Breathes hard upon our necks

Published in Bibliophilos in 2001.

I wrote this poem while I was living in my private utopia. My husband and I had received an offer to work in Germany. I worked on my English degree with a few friends and my favorite professor Dr. Atkins.

Today, I dream of my time at UMUC in Germany. I dream of writing and talking and laughing. I dream of my first best friends. And yes, I am sure that it is wish fulfillment. I'd like to go back to the University environment--but not the one that I see on T.V. and in the news.

NO! I want to go back to my time of memory. I had a couple of professors who encouraged me to be better than I am. Who worked with me on my writing skills. And, who talked with me about psychology, history, and literature.

We never know what we have until we have lost it.

The Essential Heart

ISBN: 7464-61557-2

I was introduced to Heart's music in 1988. I had joined the U.S. Navy and I was in an unfamiliar environment. Ann and Nancy Wilson were two rock goddesses singing the words to my desires.

I remember when they sang "Dog and Butterfly." It was my song. Tears and desires. Like Abba (another favorite band) they have slipped into the mists of the past.

So I was very happy when I found this limited edition of Heart with all my favorite songs. Yes, Crazy on You, Dog & Butterfly, and All I Wanna Do.

Wednesday, September 26, 2007

Some Information About Cyclophosphamide (Cytoxan)

Cyclophosphamide, also called Cytoxan, is classified as a “cytotoxic agent” because it has a toxic effect on many types of cells (“good” cells as well as “bad”). Cytoxan was first used as a chemotherapy drug for the treatment of cancer.

Researchers trying to find a cure for certain types of vasculitis discovered that cytoxan was able to suppress the immune system. This medication became the first effective treatment to suppress immunologically–mediated diseases and some forms of vasculitis such as Wegener's Granulomatosis (WG).

For vasculitis diseases, lower doses of cytoxan treatments than are used to treat cancer. However, the doses of cytoxan to treat vasculitis are still high enough to cause a significant number of side–effects. This drug must be used with great caution.

Side-effects include the following:

1. Serious bladder inflammation and bleeding from the bladder wall.
2. Anemia (low red-blood count), which causes fatigue.
3. Low platelets, which leads to a risk of bleeding
4. Risk of infection if the WBC (white blood count) becomes low (warts, shingles, and other types of infection)
5. Infertility (in men and women)
6. Premature menopause in women
7. Higher risk of developing certain types of cancer (leukemia, lumphoma, myelodysplastic anemia, skin cancer, and bladder cancer).

Prevention of possible side-effects include the following:

1. Get blood and urine tests every 2 weeks
2. Drink at least 8 eight-ounce glasses of water a day (mostly in the morning after taking the medication)
3. Take the antibiotic every day
4. Follow up with your rheumatologist as instructed
5. Keep in touch with your primary care physician

My Analysis: Cytoxan is usually taken with prednisone. There are at least two ways to take cytoxan--I.V. and orally. I took cytoxan for 11 months (every four weeks) through an I.V. My symptoms included nausea, thinning hair, low WBC, and problems with cognitive function.

I had cytoxan the second time orally for six months. I had the same symptoms. I learned to drink lots and lots of water. (I was only allowed 2 liters because I also had kidney problems).

Because of my severe vasculitis problems (almost died the first time), cytoxan was the hammer that suppressed my WG. But I had some toxic problems with it. I hope that my maintenance drug (imuran) will keep my WG in remission.

For more information about cytoxan and side-effects go here.

Tuesday, September 25, 2007

Under Orders

By Dick Francis
ISBN: 978-0-425-21756-6

Before Dick Francis was a best-selling author, he was a jockey. All of his books have some aspect of this world. He truly writes what he knows.

I found Francis when I was a student at BYU. Sometimes I had enough of school. I would walk down to the town library in Provo and read. That was the place that I first read his books. It gave me a hunger to travel.

This book is just as good. It is one of his later books about a jockey turned investigator. With his understanding of the racing world, he is able to find plots and murderers.

I really enjoy Francis' books. I give this one 4 stars.

Dating for Seniors

I am not in the senior category yet. Almost. Give me a few years. And, as you know from my posts that I already have a hubby. But, there are some of you out there that might be looking for a significant other or even a buddy. As a senior, you are probably not interested in the bar scene.

When my mother's best friend died (she was in her late 60's), her living husband was very lonely. We would give him a ride to the senior center (hotbed of romance). We would pick him up a few hours later. His home was about 45 minutes away from the center and with his eyesight (practically blind) it wasn't a good idea to let him drive. So he used to describe the games (bingo) and the girls (single grandmothers).

I am not sure if the senior centers are the same, but being technologically savvy you might be interested in online senior personals. I should mention that registration for this website is free. I would like to mention that when you meet someone you don't know to be careful. That goes for someone you meet online or even someone you meet for the first time...

But, if you want to meet someone close to your own age who could be the right companion for you, senior dating is a place to look. What are you waiting for?



Witchling

By Yasmine Galenorn
ISBN: 0-425-21254-8

Because this book is in the same genre, I can't help but compare it with LKH's books. (LKH=Laurell K. Hamilton). Anyway, it is a good start, but the characters are not as interesting to me as LKHs. It just doesn't have the depth of LKHs characters... although I guess that may be because this book is a romantic suspense instead of horror.

And maybe my bias is showing. Galenorn does a very good romance. She is a little short on her mystery plot. (This is a problem that I see with most of the romantic suspense except for Jayne Castle.) I know in romance that the focus is the relationships, but I like more.

But, if you want some good writing, romantic suspense, a little mystery with elves and other creatures... You will probably like this book.

I give it 3 stars. I think that as she writes more for her audience, her writing will change somewhat.

Some Information About Methotrexate

Methotrexate (MTX) is used to treat certain types of vasculitis. For Wegener's Granulomatosis, it is used as a maintenance drug. Like any drug used for suppressing the immune system, methotrexate has good aspects and bad aspects.

The following list contains the possible side-effects of this drug:

  1. A small number of patients will have nausea or develop a mouth ulcer. To counteract this problem some patients take the drug as a shot.
  2. Pneumonitus (inflammation of the lungs) which mimics pneumonia with cough and fever. This side-effect can happen at any time in the treatment (beginning or after several years).
  3. Liver problems such as scarring or cirrhosis.
  4. Anemia (low red blood count) which causes fatigue.
  5. Thrombocytopenia (low platelets), which leads to a higher risk of bleeding.
  6. Leukopenia (low white blood count) which may increase the risk of infections.
  7. A slightly increased risk of developing lymphoma, a type of caner after taking MTX.

Prevention of MTX side-effects:

  1. Blood test every 4-6 weeks.
  2. Take 1 mg of folic acid every morning
  3. Follow-up with your doctor (rheumatologist) regularly
  4. Keep in close contact with your primary care physician.

My experience with MTX:

My first maintenance drug after cytoxan was MTX. I took 12 1/2 mg of the drug for almost a year. That level was unable to contain my WG. I had to go back to oral cytoxan for 6 months.

After talking to other patients about taking this drug, I found that they are on 25 mg and higher. Because it is hard to take this drug orally at this amount (25 mg), they take it as a weekly shot. Some of them take up to 5 mg of folic acid to prevent mouth ulcers.

The day they take the drug, they are usually fatigued and nauseous. Not everyone has these symptoms, but they all say that they feel fatigued for at least 24 hours. Evenso, this drug is much gentler than cytoxan and many WG patients are relieved when they change from cytoxan to MTX.



For more information on this drug go here.

Monday, September 24, 2007

The Hard Way: A Jack Reacher Novel

By Lee Child
ISBN: 978-0-440-24103-4

"Jack Reacher was alone, the way he liked it, soaking up the hot, electric New York City night, watching a man cross the streat to a parked Mercedes and drive it away. the car contained one million dollars in ransom money because Edward Lane, the man who paid it, would do anything to get his family back."

The above synopsis intrigued me. Jack Reacher was an investigator in the military... Now (in the book) he is a bum. But, for some reason he finds situations that need his touch. This time a woman and child have been kidnapped. But, Edward Lane, the husband, doesn't unhappy about the loss of his wife, but not the loss of his step-child.

The plot is interesting. I really enjoy Jack Reacher, main character. The writing is good. I would give this book 4 stars.

Sunday, September 23, 2007

Sunday Scribblings: My Name Is ...

My name is Erica.

My family came from Iceland. We are from Eric the Red. We did not embrace the One God. We were hidden. If you had read the stories, you would know that Eric never acknowledged Christ. He never acknowledged the One God. He was from the priestlines of Odin. He knew better.

Our family were the secret of Odin's resurrection. He took our bodies over and over for centuries. When one elder had carried him to the age of death, Odin would jump to the next in line. They had to be of the bloodline. Odin could not tolerate another's flesh and blood. That is our sacrament.

When my grandfather realized that Odin's bloodline was narrowing, he saved us by moving to the new country. In this country we were not slaves to Odin's pleasure.

Then Ragnarök came. Most unworthies know of the one Ragnarök, when the Christians killed the myths of the Alfather and his companions. But there were two. I declare that WWII was the second Ragnarök. Hilter tried to possess Odin instead of being possessed by him. All know the failure. All know the insanity. Hilter died by his hand and Odin possessed another.

Now Odin is in the U.S. He is in my grandfather's great nephew. He is searching for me. I am the only one left.

Friday, September 21, 2007

Kushiel's Dart

By Jacqueline Carey
ISBN: 0=765-34298-7

Warning: This book has explicit sex scenes with adult themes. If I had any teenagers, I would not allow them to read this book until they are able to handle very adult themes or have left the house. Also, there is a lot of S&M in the book... I won't get into that subject on this blog.

OK, I have given you fair warning that this book deals with adult themes. Now I will gush. I picked up this book on Wednesday afternoon and had completely read the entire 901 pages by Thursday afternoon. Yes, I slept approximately 3 hours (got caught by the hubby).

The plot was complex. The main character was well-developed. I am now well-versed in the history of this country and surrounding neighbors. I even know a lot about the religion. I was fascinated. The book is a fantasy bildungsroman, an epic tale worthy of Bradshaw and other well-known fantasy writers.

I was so wrapped up in the story that I felt like I was in a waking dream. It was that good.

This weekend I will get the next two books Kurshiel's Chosen and Kurshiel's Avatar. I will be hard pressed to write anything myself. I will have to read this book more than once to get all the nuances.

Have I gushed enough?

Thursday, September 20, 2007

Snow in September

Article here at RGJ.

We had the first snow of the season on the Mount Rose Highway. It was wet and sticky and pretty heavy. AND really early. Last year we barely had any snow.

Also, they are having Street Vibrations in Reno. The bikers showed up in their summer clothes. They ended up buying more leathers. Since it is 69 degrees at 5 p.m. PST, everyone is shivering. The weather has abruptly changed.

I think the weather change is giving me a cold. I am huddled up in blankets.

Art and Healing: Using Expressive Art to Heal Your Body, Mind, and Spirit

By Barbara Ganim, M.A.E., C.H.C.
ISBN 0-609-80316-6 1999


Healing and curing are two different processes.

According to Barbara Ganim, curing is what your doctor attempts to do with pills, medical intervention, and surgery, but healing is the attempt to bring balance and harmony to your body. Only you can heal your body.

I do not agree with Ganim that many of our diseases are caused by stress and negative mind images. It smacks too much of blaming the victim for the disease. However, as I read the book and tried out different exercises, I began to feel peace and calm throughout my system. I wondered if maybe some of my reaction to my disease was affecting the way my body was healing or not healing.

Ganim divides the book into three parts: narrative, visualization, and processing the exercises. As she pointed out, drawing is only half of the work. To get the most out of the book, you need to understand your drawings, so that you can heal.

For instance, I drew a warrior woman with arrows and a hatchet in my body where I hurt such as my shoulder joints and my kidneys. I will admit that my drawing skills are not good. My warrior woman was a stick figure. This image showed me that I believed I was in the middle of a war. I fought the disease and I was not winning.

After reading the questions to process the drawing, I drew a second picture of a pond with a rainbow waterfall. These images showed me that instead of fighting my disease, I needed to relax.

Overall, this book is a good read with beautiful art to punctuate the lessons in visualization. Ganim stresses that you do not have to be an artist to use this book. Open up your inner child. Enjoy the process. Every squiggle, every mark has meaning. Then, take the time to listen . . . to yourself.

Search for HDTVs in Stores Near You

If you have been watching the news (a few months back), in a few years the TV transmitters will change from sending analog signals to digital signals. If you don't think this doesn't affect you, think again. Unless you have a doo-hickey that changes signals, you will not be able to get any of the public stations.

Ummm.

Even now a few stations are sending both signals at this time. Of course, we are told that it will be great. It will be like changing from cassette tape to Cds or from VHS to DVD. The noise will be gone.

But it means that you will need to buy a new TV. Krillion has this great setup where they can search for hitachi HDTV or other products that are in your area. Buying a TV is a great investment. I know that I wouldn't buy it online. So you can see what is offered in your area and you don't have to waste time looking for the product. Krillion will tell you the location of the HDTV. And then, you can check it out.

Perfect. I think this is a great idea.

Sponsored by Krillion.com

Wednesday, September 19, 2007

The Poor Poor Bears

In this article Another Bear comes to Town, a female bear had climbed up a cottonwood tree in town. They left her there. Another bear, I think in Sparks, was tranked by the biologists. This bear fell thirty feet.

On T.V. they assured us that the fallen bear was OK. Unfortunately, that statement is not true. Because of the drought (no snowpack this year so no water in the high country) and fire, about seven bears have come down to the cities (Carson City, Reno, and Sparks) to find food and water. The biologists said that this happens every so often. But personally I think that because we are building farther into the wilderness that the bears have less area to roam for food.

And, it looks like we will have a grand winter. Already the snow has started to dust on elevations of 6,000 feet. We are above 5,000 feet in Carson City.

Lucky for us the bears (even though brown) are actually black bears. They do NOT attack unless cornered. We are probably going to see many bears die this year.

Again... poor poor bears.

Dark Side of the Moon

By Sherrilyn Kenyon

ISBN: 0-312-35743-5

This book is basically about two people from different backgrounds who meet and fall in love. There is some fighting, soul-suckers, and underworld activity. If you are into suspense, paranormal, romance, you may like Kenyon's writings.

Now, Kenyon is on the New York Times Bestseller list. And, if I was reading this story for the first time, I would love it. However, I have now read over five of her books. After reading the first two chapters, I was bored. I put it down. I flipped through it and read another chapter. I couldn't help having this deja vu feeling. I had read this book before... nope its copyrighted in 2006. I hadn't read it before.

I checked the characters. I checked the plot. I read the ending... Yes, I admit it. This book was too much like her last one. The characters seemed the same. I feel that she needs to create a new world with different plotlines or maybe write in another genre. Get some blood flowing. Make it intense.

Don't get me wrong. Her writing is impeccable. She is a five star writer. But, to me this was a 2 star book.

Buy Your Cell Phone Online and Get Expert Service

I am not too much into internet shopping. I am one of those older people that view handing out my credit card information to a faceless corporation with suspicion. However, if you read the news, anyone can steal those numbers nowdays... even your waitress when you pay for that fine, but expensive dinner.

What does this have to do with cell phones? Well nothing really. What does apply is Cellular Sales, a Verizon Wireless Select Certified Agent, is launching a full site where you can buy cell phone service from Verizon Wireless (the nation's most reliable wireless network).

Not only will they provide cellular sales, but they will also provide a "local mobile expert" to hand deliver the phone and teach you, the customer, how to use to phone, including transfering email or contact records to the new phone. How is that for service?

You can go to their web site to find a location near you.

I have got to admit that my cell phone has been a life saver on a few occasions. My husband gave me the phone so that I could call the hospital or my doctors if I was having medical problems. It has been a real relief. So I am sure that this company with their focus on customer service (I really like that idea), will work hard for you.

Sponsored by Cellular Sales

The Harvard Medical School Guide to Healing Your Sinuses

By Ralph B. Metson, M.D. with Steven Mardon
ISBN 0-07-144469-6


Let us cut to the chase—I highly recommend “The Harvard Medical School Guide to Healing Your Sinuses.” I picked this book because it had the magic word sinuses in the title. After I started to read, it became obvious that it had been written in understandable English and not technical jargon.

For instance, Dr. Ralph Metson uses simple language to describe the sinus structure. He illustrates the emptiness of the sinuses. The sinuses are not an organ like a heart or a kidney, but are more like caves covered in bone. Then, he explains how the sinuses can get clogged and filled with bacteria, viruses, and fungi.

The crowning cap to Dr. Metson’s writings is his advice on how to heal the sinuses. Although much of the information is for acute and chronic sinusitis, we can use this same information to keep our sinuses healthy.

One technique that Dr. Metson recommends is nasal irrigation. He explains that keeping the sinuses healthy also helps the body rid itself of bacteria and viruses that can cause colds and infections. He suggests rinsing the sinuses at least twice a day after brushing our teeth. The term he uses is “brush and flush.”

Using his advice on nasal irrigation, I was able to clear a sinus headache without using painkillers or decongestants.

Some of the topics in this book are “How Your Sinuses Work,” “Nonsurgical Treatments for Sinusitis,” “Surgery for Sinusitis,” and “Special Considerations.” In “Special Considerations,” Dr. Metson talks about Wegener’s Granulomatosis. It is a very short explanation, but it does bring awareness to the sinus issues associated with our disease.

I will definitely keep this book as a medical reference.

Arthritis under assault

Abram Katz, Register Science Editor
09/10/2007

Many people think of arthritis as minor aches and pains. For most people, that’s all it is.

But, about 1 percent of the adult population — some 2.1 million people, two-thirds of them women — have rheumatoid arthritis, which is far more than wear and tear of the joints.

Rheumatoid arthritis is believed to be an autoimmune disease, which means the sufferer’s own immune system mistakenly attacks tissue that surrounds the joints. The complex disease probably is influenced by genetic and environmental factors, too.

The rest of this article is here.

My Analysis: Although my disease deals with the blood vessels, it is related to RA (Rheumatoid Arthritis). We have been able to use the same treaments that were first used by RA patients. One treatment (Remicade) does not work for us, but another (Rituxen) does.

I believe that if RA research was better funded, it would help us too. So I find this article hopeful as well.

Tuesday, September 18, 2007

Welcome to Villa Nicoletta

Tucked on the north shore of St. Thomas, Villa Nicoletta is a luxury villa complete with four bedroosm, deck, kitchen, tiki bar, pool and spa. A fabulous holiday or honeymoon getaway from the world. As you can tell from these pictures that it is gorgeous. No I haven't been here, but I'd like to see it.

Who wouldn't love the possiblities here. Sun. Sand. Sea. The palms trees swaying in the breeze.



The St Thomas Condos in the Virgin Islands has other amentities in Villa Nicoletta too: plasma TVs., wifi, and a home theater. But why would you need those things... did I mention the ocean?

As I said before, I have never been to St. Thomas, but I have been to Cape Town. Cape Town had yellow and white beaches. We would walk in the sand, feeling it squish through our toes. I am quite fair so I have to cover up.

I would wear my swim suit under a longish shirt. I would sit near the beach and listen to the ocean hit against huge rocks that protected the beach. From the pictures, St Thomas looks like the same beautiful quiet place. The waves crashing against the beach have its own music.

So if you are planning on a lovely beach holiday in the winter (or fall)... the villa looks like a great place to take the family.

Sponsored by St Thomas Condos.

Running Blind

By Lee Child

ISBN: 0-425-20523-8

Here is another library book. I have read a few of Child's books and I was prepared for a "Bourne Ultimatum" ride. He delivered.

Jack Reacher (the character) left the military about three years before this story. He was a MP investigator for crimes such as rape. In this book, some of the women in the cases he investigated were being murdered one by one. The strange thing about these murders as they seem dispassionate. The bodies are found in military grade paint. None of the women show any reason for their deaths. The pathologists are stumped.

The story line was great. However, having been in the military, the favors that Jack pulls from his buddies (still active military) was not reasonable. Although any retired military member can request airplane rides, there are space restrictions. I know one guy who waited for a ride to England and ended up in Turkey.

I have to admit that retired and active military people do stick together (more than is understood in the civilian society). The military is a life-changing event. But back to the book.

This book was a good read. Five stars.

M.D. Anderson-led team reports possible key to autoimmune disease

Body's own DNA coupled with a peptide ignites immune response usually aimed at fighting infection

HOUSTON – A human peptide that acts as a natural antibiotic against invading microbes can also bind to the body’s own DNA and trigger an immune response in the absence of an infection, a research team led by scientists at The University of Texas M. D. Anderson Cancer Center reports in an early online publication in Nature.

“This combination of the peptide and self-DNA activates the same immune response pathway as a virus does,” says senior author Michel Gilliet, M.D., assistant professor in M. D. Anderson’s Departments of Immunology and Melanoma Medical Oncology.

The rest of this article is here.

My Analysis: This look at the DNA and peptide repsonse to certain people's immune systems could be a breakthrough for all autoimmune diseases. I am very hopeful at this line of research.

Monday, September 17, 2007

Learning Language Over the Internet

A lot of my friends know that I have a few foreign words at my fingertips.. I even took a few German courses when I was in Germany. But I have to admit that I am not fluent. I can ask for a beer, meal, or hotel room. I can count in German and in Spanish. And, I have a few greetings in Japanese. But fluent???? No.

As you probably know, the global marketplace also means learning enough business language to conduct business in other countries. It can cost 1500 dollars or more for fluency. In fact, when I was in Japan, the Japanese would pay English speakers just for the chance to talk to them. There is nothing like experience in learning the idioms of English (or other languages).

The hardest thing for me in German was the cut phrases (Tag instead of Guten Tag). It took me a long time to realize what I heard. And yes, it made me look like a slightly retarded foreign woman.

Myngle has a solution to the problem. They are putting together a language website to help foreign speakers learn the desired language from native speakers. They can help the beginner or advanced conversationalist. And one thing I learned about language... If you want to keep it, you need to practice it.

So in my opinion, this website is a very interesting idea for learning a new language before that business trip or vacation. Bon Voyage!

Sponsored by Myngle.com

Silver Master

By Jayne Castle (Jayne Ann Krentz)

ISBN: 978-0-515-14355-3

I really enjoy having some paranormal suspense mixed up in my romance. And, Castle (Krentz) delivers. The story line is about a stolen relic. Davis is searching for the relic and meets Celinda. The sparks fly.

There is a couple of villians, dust bunnies, and relics. I have to admit that the dust bunnies (alien pets) add some cozy humor to the books. When I finished the book, I had a warm glowing feeling... It is really a chick book.

So if you want a feel good book with paranormal and mystery elements, this book is for you. I give it a five stars for character, writing, and plot.

Change from passive patient to an active advocate for your own health care.

By Martin F. Downs
WebMD FeatureReviewed by Brunilda Nazario, MDWithout doubt, communication is crucial to good health care. When people take an active role in their care, research shows they fare better -- in satisfaction and in how well treatments work. A passive patient is less likely to get well.

Yet patients often don't speak up for themselves, says Dr. Paul Haidet, staff physician at the DeBakey VA Medical Center, in Houston.

The rest of this article is here.

My Analysis: This is an excellent article about getting the best health care by communicating with your doctor. We have found with WG disease that if we are passive in our treatment, we are likely to have more problems. The treatment is very toxic so knowing what is coming next is very important. Also, the treatment causes cognitive difficulties.

A good suggestion for those who are having difficulties is to have an advocate--member of the family is ideal, but many hospitals have services for patients. The object to health care is to get better... that is the goal.

Sunday, September 16, 2007

Sunday Scribblings: Collections


I have always considered myself NOT a collector. My mother was into fabrics and crafts. She has a large mobile home filled with stuff. She would collect rags so that she could make rugs.

In my case, I have had to be able to stuff my few clothes and things into a few bags and off I would go (that was when I was in the Navy).

However, I cannot claim non-collector status anymore. I have bookcases in the bedrooms. I have piles of TBR (to-be-read) books on my writing table. And, I have piles of books to give to the library.

Yes, I am a bibliophile. A collector, yes?

Saturday, September 15, 2007

Mount Dragon

Douglas Preston & Lincoln Child
ISBN: 0-812-56437-5

I discovered this book at my public library. I like reading different genres. I had become tired of my urban fantasy reading a couple of months ago so I went looking for some mystery/thrillers.

In the interest of science and good literature, I dove into Mount Dragon. It started out a little slow with a lot of characters. For the first chapters, I had to keep five characters straight. They seemed somewhat alike. But as I began to understand the premise, DNA medical breakthroughs. And when I began to sort out the good characters from the bad characters, I began to enjoy the story.

Oh yea... and the good characters and bad characters were complex. I could almost cheer for Scope (corporate money giant). And, the really good character Levine was weak. But ... now I won't spoil the end.

The end was so different than what I expected. Except for the slow start, I would read this book again. It was five stars.

The Mean Kitty Song

Friday, September 14, 2007

The Taste of Night: The Second Sign of the Zodiac

By Vicki Pettersson

ISBN: 13 978-0-06-089892-2

I don't know why I am reviewing these books. I almost flunked second grade because I refused to do book reports. As the story goes, my mother spent half a summer cracking the whip so I could pass second grade. The problem was I didn't like to write the reviews, but I did like to read the books.

Well, 'nuff about me. This new book of Pettersson set in a different Las Vegas than I spent my time in (you have to read the review about the first book) was OK. I know she is trying to fight in a market that carries heavyweights like LKH. She will get there eventually.

I think she needs to do more work on her characters. The story was good. The premise was good. But, I am having a hard time liking Joanna Archer.

So, so... read it. It is NOT a total waste of time. I would read it again.

When in Rome

My main bloodline is the Norsemen. So when I say I love to travel (and conquer) you would understand... maybe. But I do love to explore new worlds. That is why when a few years ago my best friend went to visit her husband in Italy, I was jealous.

She talked of the markets were she found beautiful silk scarfs. And she grew verbose about the food. It was fresh. It was good. The pasta was divine. She learned a few Italian words "Grazi, etc." The closest that I have come to Italy is when I was in a small airport in Swizerland. I looked out the windows of the airport and saw the Alps. They were covered in snow. Beautiful.


I would like to see Rome someday. Particularly St. Peter's Basilica, the Spanish Steps, and the Colosseo. So I looked up a few tourists sites. I found this website with Rome hotels in the center of the city. From my experience, it is better to stay in the center of the city because that is where you will find the best restaurants, museums, and interesting places.

This website also had Rome apartments for a longer stay in the city. This website even had a guide to the best Rome tourist sites, English speaking cab drivers, and other amenities.

As they said on the site, "Roma, non basta una vita" (Rome, a lifetime isn't enough). So after your first trip, you may be planning for a second.

Sponsored by Romaclick.com

Thursday, September 13, 2007

Poetry Thursday

The traveling poetry show is at The Polka Dot Witch today. Enjoy the poetry.

My offering is next:

Golden Pumpkin

Leaves, green-yellow
clipped by crickets
worn drab by the desert sun

You push to life:
a destiny fulfilled
from a small seed

The Scent of Shadows: The First Sign of the Zodiac

By Vicki Pettersson
ISBN: 978-0-06-089891-5

Vicki Pettersson was a dancer in Tropicana's Folies Bergere in Las Vegas. She turned in her sequins for a laptop and this story was born. At least that is what it says in her author's page.

For a dancer turned writer, this was a decent book. It has a dark brooding heroine with a camera. She finds that her life is not really what it seems. Her mother is some type of super-hero. The heroine, Joanna Archer, doesn't find out her true heritage until she almost dies.

Once again this story was decent. I wasn't too enthralled with the heroine in the first few chapters. She seemed like a whiner. But she did change in the end.

The story category was fiction. I think it should have been in the sub-genre of urban fantasy. I was expecting a mystery.

Also, if you are trying to find the real Las Vegas in this story... ummm it isn't there. I have lived in Las Vegas for several years. And, there is a few of those sex-pot areas, but they are confined to a small area behind The Strip. I have got to admit that I like the surrounding desert much better than the city itself.

On a scale from one to five, the story was about a three, the character was about a three and 1/2, and the writing was about a four. It was good for a first book. I hope Pettersson keeps writing and keeps developing her novel skills.

Cameras and My Life


When the first heavy cameras were invented in the 1800's, the Native Americans (and even other native peoples) believed that some of the spirit was captured in the camera. Even today, I am sure that you know some folks who refuse to have their picture taken. My mother and grandmother used to put their hands on the lenses. Don't photograph me, they would say.

My first camera was a small camera that had cartridges. I don't remember the name, it was so long ago. But I would take pictures of leaves, buds, and rocks. I liked to capture the needles on a pine or a pine cone. Some of my best pictures are of bees and other insects drinking nectar. I have one picture where I have a unique perspective of a castle wall.



This picture is of the clock tower in Rodenbach, Germany.

My husband became interested in digital cameras in Germany because he could crop and alter the pictures easily. It wasn't until I decided I needed to take pictures for my hobby Amateur Radio that I decided to get into digital cameras.

As I searched for the perfect model, I found something exciting. The cameras were light and easy to use. There were so many different brands. Some were so small that you could put them in your pocket.

There are so many makes and models now days. A good start would be canon cameras. They have pocket cameras, EOS bodies, and camcorders. Before I went digital, I loved the EOS rebel 35 mil. It was great.

My tip for taking pictures...? If you don't take them, then you don't have those special moments.

Sponsored by Ritz Camera.com & Electronics.

Wednesday, September 12, 2007

Sierra Sage Cloud


Thanks Don. I see a lifetime of words here. So much of my life has been centered around a career (military, electronics, typesetting, etc.). Now my life has changed to understanding chronic illness, medical, supplements, and treatments. Maybe in five years, I should do this again.

Kiss. Kiss. (Anne Bishop)

Crossing The Line Between Tired And Fatigued

Science Daily — Jennifer Sieck knew something had to be done when she would lie in bed most of the day and night. “It would be a big deal and everyone would get excited if I’d come down to the living room and could sit there for 10 or 20 minutes,” the 38 year old says.

An estimated 20 to 30 percent of all primary care patients tell their physician that they feel fatigued.

Sieck was more than just drowsy; she was fatigued, and no amount of sleep could shake her exhaustion. “It’s not about being tired, it’s about being in a state where you are not yourself,” she says.

The rest of the article is here.

My analysis: Fatigue is a common symptom with WG patients. The medication and disease are both factors for this side-effect. My first year with WGs, I slept 10-12 hours a day. I would eat breakfast, sleep, eat lunch, sleep, and eat dinner and then sleep. As my labs became better (inflammatory markers), I slept less and less.

So if you are having problems with fatigue, talk with your doctor.

Rolling with the Blue Angels

Video is here.

The Blue Angels would put on quite a show when I was going to military school in Pensacola. They were fun, but the pilots off the Air Craft Carrier were better... really.

We had a couple of aircraft zoom in, do a few tricks, and zoom away. It was the Blue Angels only faster.

Go see them if you get a chance.

Tuesday, September 11, 2007

After the Leveling of the WTC's Twin Towers 11 September 2001

Rumors flew in the mailroom as I stood
hearing of two planes flown into the World
Trade Towers, flown into the mercantile
symbol of the world—acts of terrorists.
"Tell me which airline," I cried. "My brother
works for United." They said, "This is war."

Blaring from TV and radio—"War,
this is an act of war"—the frank words stood
against a horrifying act. Brother
of Islam performed Jihad against a world,
a world not their own. Young sons, terrorists,
sacrifice their lives against mercantile

concerns. "Allah, protect us from mercantile
nations. Allah, strengthen our arms for war."
I wonder how these young men, terrorists,
could justify killing us. So I stood,
numb, that nineteen young men could steal my world,
my peace. I wail, "Are you not my brother?"

The towers collapse as someone's brother
leaps from eighty floors. How could mercantile
business concern us as this crumbling world
destroys? Smoke, glass, dust covers … scenes of war …
covers Lower Manhattan. Many stood
watching them implode. They cheer, terrorists,

claiming the dragon's death. The terrorists
forget we also have mother, brother,
sister, wife, husband, child. We ate, slept, stood
as they did—no monsters here. Mercantile
corporations provide needs. Yet if war
is what they want, we will search the whole world
to discover their holes. Searching the world,

we will exterminate the terrorists.
"One Nation Under God" howls for the war
which would pit Jesus Christ against Brother
Islam. Towers, symbols of a mercantile
world, were destroyed, but freedom still stood.

The world's a wasteland, smashed by a brother—
a terrorist brotherhood. Mercantile
interests demand war. In the mailroom, I stood.

***I wrote this September 18, 2001. I watched the memorial today on T.V. It still brings me to tears.

Monday, September 10, 2007

Angel-Seeker: A Novel of Samaria

By Sharon Shinn

ISBN: 0-441-01260-4

If you have read Archangel, you will find that this book (Angel-seeker) contains some of the background stories of people and angels who were in the earlier novel. However, you don't need to read the other stories to understand what is happening.

Samaria is a world of technology and magic. And in this story, two women Elizabeth and Rebekah live in two different cultures in the same world. They meet peripheraly as they become involved with angels (beings who sing to keep the world in harmony.)

Shinn's world is very complex and very interesting. I enjoyed her books enough that I have read at least three in the series.

My favorite novel is Shinn's debut novel The Shape-Shifter's Wife.

Shinn writes well and is not mid-list. She has earned her National Bestselling status.

Association study with Wegener granulomatosis of the human phospholipase Cγ2 gene

Peter Jagiello,#1 Stefan Wieczorek,#1 Philipp Yu,2 Elena Csernok,3 Wolfgang L Gross,3 and Joerg T Epplen1

Abstract:

Background
Wegener Granulomatosis (WG) is a multifactorial disease of yet unknown aetiology characterized by granulomata of the respiratory tract and systemic necrotizing vasculitis. Analyses of candidate genes revealed several associations, e.g. with α(1)-antitrypsin, proteinase 3 and with the HLA-DPB1 locus. A mutation in the abnormal limb mutant 5 (ALI5) mouse in the region coding for the hydrophobic ridge loop 3 (HRL3) of the phospholipaseCγ2 (PLCγ-2) gene, corresponding to human PLCγ-2 exon 27, leads to acute and chronic inflammation and granulomatosis. For that reason, we screened exons 11, 12 and 13 coding for the hydrophobic ridge loop 1 and 2 (HRL1 and 2, respectively) and exon 27 of the PLCγ-2 protein by single strand conformation polymorphism (SSCP), sequencing and PCR/ restriction fragment length polymorphism (RFLP) analyses. In addition, we screened indirectly for disease association via 4 microsatellites with pooled DNA in the PLCγ-2 gene.


Results
Although a few polymorphisms in these distinct exons were observed, significant differences in allele frequencies were not identified between WG patients and respective controls. In addition, the microsatellite analyses did not reveal a significant difference between our patient and control cohort.


Conclusion
This report does not reveal any hints for an involvement of the PLCγ-2 gene in the pathogenesis of WG in our case-control study.

My Analysis: There may be other gene involvements. It is great that these scientists are researching this aspect of the disease.

Sunday, September 09, 2007

INTP

You Are An INTP

The Thinker

You are analytical and logical - and on a quest to learn everything you can.
Smart and complex, you always love a new intellectual challenge.
Your biggest pet peeve is people who slow you down with trivial chit chat.
A quiet maverick, you tend to ignore rules and authority whenever you feel like it.

In love, you are an easy person to fall for. But not an easy person to stay in love with.
Although you are quite flexible, you often come off as aloof or argumentative.

At work, you are both a logical and creative thinker. You are great at solving problems.
You would make an excellent mathematician, programmer, or professor.

How you see yourself: Creative, fair, and tough-minded

When other people don't get you, they see you as: arrogant, cold, and robotic


I already knew it, but I am giving my thanks to Harmonyinline for this personality test.

I'm a Cool High Nerd


NerdTests.com says I'm a Cool High Nerd.  What are you?  Click here!


Thanks from Terry at I See Invisible People.

Sunday Scribblings: On Writing

Before I start on my writing day, I put my pen to my small journal. Each day I write two or three pages of just anything that pops in my head.

I might write of my problems: housing, husband, writing, etc. Or I might write of my successes. Or I might write words, any words, babbling brook across the page.

What I do remember is the feel of the pen as it scratches across the page. I smell the paper and ink. I hear the scrub jays squack in the background. I have to admit I really like those old pens with nibs. There is something special about writing fast with one of them in my hand.

Once I have calmed down and I'm ready to write (a meditative state of sorts). I check my list. Yes, I need to write on my blogspot. And then, I need to work on fiction elements. Thursday I need to prepare a poem and then... and then...

Some days I have plenty to write. Other days, I feel tired or bored. On those days I use my rituals. I clean my writing area (table, computer, and books). Sometimes the dust on the table is like the dust in my head. I light a candle. I turn on my Ipod and listen to classical music (somtimes opera) or rock.

Or I take a shower. A shower is a really symbolic way to clear out the rubble.

Or I look for metaphors. Sometimes I try to quiet my mind until I hear echos. Then I dip in my hook and out comes pictures and character and whatever else. Sometimes my ideas don't come until I am trying to sleep. They pop out whole just before I start snoring. I really hate that.

But the best days, the days that I like to remember are when I am so involved with the story or poem that hours disappear. When I look up, it is time to make dinner and my stomach is grumbling.

Why do I write? I have mentioned that I started writing before I could read or write. I would scribble on paper and then read it to my friends. I started writing my first journal after I was six years old. I wrote my first poem, a limerick, at ten. I used to critic my grandfather's poetry when I was 8 and 9. He would send them to me to look over.

I don't know why I write. It is a compulsion. It is my addiction. It is my life.

Madeleine L'Engle

Don at Siedon's Sanctury wrote a touching tribute to a woman who touched all of our lives through her book "A Wrinkle In Time."

We will miss you.

Saturday, September 08, 2007

Identification of Novel Wegener’s Granulomatosis Susceptibility Genes

Abstract
Wegener’s granulomatosis (WG) is a multisystem, necrotizing, granulomatous vasculitis that affects about 3 in every 100,000 people in the United States and is equally prevalent in males and females. Diagnosis of WG is difficult, and many physicians are unfamiliar with the condition. Thus, there is a significant unmet medical need for improved diagnostic tests. Development of new diagnostic and therapeutic approaches to WG has been substantially impeded by lack of understanding of the causes of WG.

Many lines of evidence suggest that a major cause of WG is infectious insult of genetically susceptible individuals. A handful of susceptibility genes have been examined as possible etiologic factors, but to date both the genetic and infectious factors underlying WG remain unknown. Identification of WG susceptibility genes would, however, provide a very promising avenue to the development of improved diagnostic and prognostic tests as well as new targets for therapeutic management. Although technologies for disease gene discovery are radically improving, the application of such technologies is highly dependent on the availability of collections of DNA samples from affected individuals and their family members.

This proposal describes a strategy to collect blood samples and prepare DNA from individuals with WG and their immediate family members, and to conduct comprehensive clinical chart review in order to obtain powerful data for results stratification and analysis. The obtained samples and clinical information will lay the foundation, and be absolutely required for, future studies to identify WG susceptibility genes.

Read the rest of this article here. If you are eligible to be in this study, contact information is in the article.

Franchise Business

I don't normally endorse franchise businesses. But vendstar seems to have a good thing going. Vendstar provides an opportunity for individuals and entrepeneurs to start in the vending business.

Oh heck, if I had the capital and energy, I might try this one out. The biggest problem would be where to set up your vending business. I know that I have seen these machines in restaurants, stores, and even auto shops. When I was living in Germany, we saw these machines on the base.

I know I used to see the kids standing around the machine, begging their mothers for coins to put in the machine.

So check it out.

Sponsored by Vendstar.

Glass Houses: The Morganville Vampires Book One

By Rachel Caine

ISBN 0-451-21994-5

Normally, I don't read young adult novels. But, I really enjoy Caine's Weather Warden series. I slogged through the angst of being too young in a college world.

The protagonist Claire Danvers is a young genius in a weird town. Because she is too young and too smart, she is noticed by one of the more popular girls.

Take the angst, take the unpopularity, and then add vampires... Then you start to have a good story. I won't spoil the end, but Claire finds a house with misfits.

It is an engaging story. Personally, I didn't want to remember the days of unpopularity. So I won't read it again. But, you know I just wasn't the right age for this novel. A pity.

Systemic vasculitides: immunogenetics and familial clustering.

Fietta P.
Osteo-Articular Department, Rheumatic Disease and Internal Medicine Unit, Hospital of Parma, Via Gramsci no. 14, 43100 Parma, Italy. farnese15@libero.it

The systemic vasculitides (SV) are a heterogeneous group of rare affections characterized by a primary process of inflammation and damage of the blood vessel wall. Their etiopathogenesis is still unknown, but a complex interaction of multiple factors, such as age, sex, ethnic background, immunogenetic mechanisms and environmental influences, is probably involved. A genetic predisposition to SV is suggested by both familial case clusters and immunogenetic studies. The available reports on familial SV via the PubMed (National Library of Medicine) and Biosis indices, as well as personal observations, are summarized here.

Furthermore, the evidence for a role of genetic predisposing factors is reported. The literature review suggests that several SV such as giant cell arteritis, Takayasu arteritis, Kawasaki disease, Wegener's granulomatosis and Henoch-Schönlein purpura, are governed by multiple genes encoding host defence molecules and probably triggered by environmental agents. Genetic factors seem to be implicated not only in the susceptibility, but also in the severity and outcome of SV.

PMID: 15083896 [PubMed - indexed for MEDLINE]

My Analysis: There is a genetic predisposition for the vasculitis diseases. But they need a trigger. And, this abstract also says that they do not know what triggers the diease yet. I have been saying this since I was diagnosed with Wegener's.

Friday, September 07, 2007

A Fun Website

I had heard about Trustedplaces in facebook. I have a profile there. Anyway, it is a great new community site where you can talk about places you have been. You can dish the dirt or give full praise.

When I logged on using my facebook account, I went through a survey to see my taste in food, music, cities, and people. Well it did lead me to some interesting essays. I am going to spend more time here. Really.

The favorite page is about london restaurants. Sign on and review.

Sponsored by Trustedplaces: Real Places. Real People

Giving Blood, Giving Life

The Ramstein south-side gym crouched against a cloud-covered horizon. Its squat ugliness and dirty-white walls contrasted sharply with its new purpose. Instead of supplying airmen and soldiers with exercise bikes, strength training equipment, or a basketball court, today the gym housed a blood drive.

Only six days before, I had heard a plea on AFN radio for blood donors. Like many other Americans around the world, I had felt helpless after the terrorist attack on New York and Washington. I wanted to help. So here I was standing in front of the gym, taking a deep breath before walking in. I was determined. I would allow a stranger to insert a needle into my arm.

The gym had been set up in a logical fashion. First, I signed in, picked up the paperwork, and read the literature. Next, I presented the paperwork to a technician who entered it into a computer. At the next stop, my blood pressure, temperature, and hemoglobin were taken. I waited, then talked to a young woman who asked me my sexual and drug history. In less than two hours, I received my donor bag.

Easy? Well, no. Within ten minutes of arriving at the gym, a group of airmen with flak jackets and helmets evacuated everyone at the blood drive. One airman told a donor that she could not leave, but that she had to walk with the other blood donors to a safe distance until the "all clear" was given.
When we reached the courtyard opposite the gym, another airman called us to stop. "It was a mistake," she said. After talking to other blood donors, I concluded that we had just been caught in a military exercise. The result—many of the evacuees left without donating blood.

My next adventure occurred when the blood pressure cuff tightened on my arm four times before the machine finally decided that I had blood pressure. (For a moment, I wondered if I was one of the walking dead.) In the excitement, the technician forgot to write my hemoglobin reading on my paperwork.

I know, I am adult, and I should not whine, but the hemoglobin test requires the technician to prick a donor's finger for a drop of blood. After capturing the blood, it is inserted into a machine, which displays a number. If the number is over twelve, the hemoglobin reading is good. For some reason, the prick for this small drop of blood seems to hurt more than when the needle is inserted for the blood donation.

Well, I can proudly say that I was pricked twice. My technician, a red-haired freckled Botticelli angel, was properly apologetic. "I know your hemoglobin was good," she said. "I just can't remember what it was." I submitted again, and went on my way.

In each stage of my blood-donor journey, I waited and waited. Those of us in line began exchanging blood types. I am an O positive, I would say, what are you? A negative, A positive, B negative, O positive, and O negative were some of the answers. Once the ice was broken, we would exchange private information. I am here with my husband. I work as a civil servant. Or, I am a soldier or airman.
One young airman was giving blood for the first time. He reminded me of the first time I gave blood. I was a student at Brigham Young University and was a shy, scared twenty-one year old. Another student ahead of me calmed my fears by telling me that he was an AB negative, a very rare blood type. Whenever the Red Cross needed his blood, he said, they would call him in to donate. I told the airman what this student told me—it won't hurt . . . much.

Finally, at the end of this journey, I sat on a blue chair watching the lab technician wash my arm with iodine and prepare my vein for the needle. A sharp stab, then the blood began to flow. I chatted with a young woman who was waiting her turn. "What was the fastest time anyone filled a bag?" she asked the technician.

"Four minutes," he said. "But the man had veins like a freeway."

Twenty minutes later, the technician snipped off my donor bag. I looked at it. The bag hung limply from his hand. "Is it enough?" I asked.

"Well, it might be considered low-volume," he frowned, looking doubtful. "But thank you for coming. We really need the blood." Then he added, "Tell your friends."

Despite the evacuation, my pricked fingers, and my low-volume donation, I will give blood again. Why? Because as I shared my stories with other donors who were waiting to give blood, I realized that even though I was not in the military I was part of this community. I had shared a gift that would save someone else. I had given life.

Published in Stars and Stripe 2001.

PS... Because of my disease, I cannot give blood. Thankfully, when I needed blood over 4 years ago, it was there.

Writing as a Way of Healing: How Telling Our Stories Transforms Our Lives

By Louise DeSalvo
ISBN 0-8070-7243-5

We want to heal. We want to live our lives as close to normal as possible.

According to Louise DeSalvo, healing comes from understanding the positive and negative aspects of our disease. This concept means that instead of being overly optimistic or despondent that we need to critically examine how this disease has influenced our lives. It is through this examination that we can reconcile our emotions and body. It is through this examination that we can learn to live with and conquer our disease.

After reading DeSalvo’s book, I realized that in a small part I am using her technique to understand why I became ill and how I am coping with Wegener’s Granulomatosis. Each day, I write of my experiences in a journal or on my blogspot about my routines, my doctors, and my symptoms. I wonder if there was anything that I could have done to minimize or even stop the disease before it took over my life.

I now know that this disease is not of my choice. I now understand that becoming ill was not my fault. This knowledge has brought profound relief to my psyche.

Another aspect of writing our stories is giving help to others who are in the same situation. DeSalvo talks about “Wounded Body narratives.” In these narratives, individuals write about their illnesses such as AIDs and cancer and how it impacts their lives and the lives of their loved ones.

When I first became ill, my husband and I searched the internet for some idea of what I had. We found very little. What we did find was scary. From this experience, I feel an obligation to provide information and help to others with wounded bodies.

Overall, this book made me think differently about sickness and health. I would read it again.

Sweat Suits and other thoughts

After a dayshift (in the Navy), we would pull on some sweats and go to the gym. Because we had a Physical Training test every six months, we had to keep in shape. Part of the test included pushups, situps, and a 1 1/2 mile run.

The Air Force PT test was slightly different from ours. They would get on a stationary bike for a set amount of minutes. According to weight and height, the test would tell if the airman was in shape. They might have had to do situps too, but it was awhile back... so I can't remember.

I had a lot of different sweat suits because they were so comfortable. Yea, I am getting to the point...

Boxing Depot has some Sweat Suits by Everlast for men and women starting at $14.95. They also carry the Ultimate Sauna Suit by Realsauna, neoprene workout shorts, and slimmer belts. You'll like the prices and look like a boxer... or in my case a sailor again.

Sponsored by Boxing Depot.com

The Harvard Medical School Guide to Healing Your Sinuses

By Ralph B. Metson, M.D. with Steven Mardon
ISBN 0-07-144469-6


Let us cut to the chase—I highly recommend “The Harvard Medical School Guide to Healing Your Sinuses.” I picked this book because it had the magic word sinuses in the title. After I started to read, it became obvious that it had been written in understandable English and not technical jargon.

For instance, Dr. Ralph Metson uses simple language to describe the sinus structure. He illustrates the emptiness of the sinuses. The sinuses are not an organ like a heart or a kidney, but are more like caves covered in bone. Then, he explains how the sinuses can get clogged and filled with bacteria, viruses, and fungi.

The crowning cap to Dr. Metson’s writings is his advice on how to heal the sinuses. Although much of the information is for acute and chronic sinusitis, we can use this same information to keep our sinuses healthy.

One technique that Dr. Metson recommends is nasal irrigation. He explains that keeping the sinuses healthy also helps the body rid itself of bacteria and viruses that can cause colds and infections. He suggests rinsing the sinuses at least twice a day after brushing our teeth. The term he uses is “brush and flush.”

Using his advice on nasal irrigation, I was able to clear a sinus headache without using painkillers or decongestants.

Some of the topics in this book are “How Your Sinuses Work,” “Nonsurgical Treatments for Sinusitis,” “Surgery for Sinusitis,” and “Special Considerations.” In “Special Considerations,” Dr. Metson talks about Wegener’s Granulomatosis. It is a very short explanation, but it does bring awareness to the sinus issues associated with our disease.

I will definitely keep this book as a medical reference.

Disease clusters: should they be investigated, and, if so, when and how?

Paul Elliott & Jon Wakefield
Imperial College School of Medicine, London, UK,
University of Washington, Seattle, USA

Abstract:
Individual cluster reports are subject to several difficulties in interpretation. Although they rarely lead to new aetiological insights, a public health response to delineate the size and extent of any excess risk may be warranted. Further investigation, where merited, should usually include an examination of data for different areas and/or different time periods. A statistical evaluation of disease clusters is often secondary to a detailed appreciation of issues such as the availability and quality of data, confounding and bias in the selection of areas for study.

My Analysis: I am kind of astounded at this evaluation of disease clusters, considering many of the disease clusters for WG do provide more information on what triggers the disease. Considering that none of the scientists have been able to find the cause of this disease (they were looking for triggers such as virus, fungus, etc.). Just recently scientists have found a disease cluster that was caused by silica. In the U.K. organic solvents such as TCE are being considered as culprits...

So study those disease clusters... it might help the rest of us.

The Great Reno Balloon Race



I can't believe it is that time of year again. The Great Reno Balloon Race is back. Normally, I don't go to this event because it is so crowded. But I hear that there is nothing like watching the balloons rise in the air in the early dawn.

And of course, this event has been all over the news. Some of the events occuring in Reno today and throughout the weekend are Dawn Patrol, Glow Show, Tissue Paper Balloon Launch, Kids Corner, Balloon Boulevard, and Balloon Blackjack. Of course, there had to be blackjack... we are in Nevada, ya know.

My husband is talking about seeing the Dawn Patrol. Apparently the balloons ascend at 5:30 a.m. (still dark). It is a dangerous maneuver, but oh, so beautiful.

Thursday, September 06, 2007

You: The Smart Patient: An Insider’s Handbook for Getting the Best Treatment

By Michael F. Roizen, M.D., and Mehmet C. Oz, M.D.
ISBN 0-7432-9301-0

Navigating the medical system during a crisis can be extremely hard. The authors of this book advise patients to become smart about their own treatment and care before taking on physicians, pharmacists, and other medical professions.

A smart patient has a copy of his/her medical records, researches doctors and treatments, and appoints an advocate for the times when he/she cannot speak for him/herself. All of these strategies can be useful for a Wegener’s patient.

Some of the subjects in this book include “finding doctor right,” “let’s play operational,” and “prescriptions drugs.” Each of these subjects is written in lay terms with a playful attitude. There is nothing serious here. But, these subjects are deadly serious in keeping us in good health either during surgery or staying in the hospital.

This book contains checklists and addresses to help you find the best doctors, hospitals, and health insurance for your condition. Also, the information in this book can be used for any medical problem because it contains the basic information on how the U.S. medical system works.

Many of these ideas have been used in Bruce’s (WG patient) website. Some of the forms in this book can be found at the RealAge ® Website here.

I was impressed with the information contained in this book. It is definitely staying in my personal reference library.

I'd Like to Go Back to Orlando

I had a great time in Orlando, Florida. And truthfully, if I ever got the chance to return I would be on the plane (clearing my throat), I mean, in my car and I would drive down there. I do have problems with planes. Because of being immune-suppressed, I either have to avoid planes or wear a mask. I know other WG patients take the risk, but I haven't been on a plane since 2003.

But, back to the subject. I really love Orlando. There are so many places you can go and see. The weather is fine. And it is not that far from the beach... Well, OK it is closer to the beach than Carson City, Nevada.

I am sure that if you have already decided to vacation in Orlando, I don't have to remind you of the Disney World and Sea World attractions. And I bet you are looking for the best selections of hotels, car rentals, and flights throughout the greater Orlando Florida area. This website at hotels orlando is just what you are looking for.

This site offers travel and vacation arrangements in the Orlando area, with a travel guide containing entertainment options.

So take the family or significant other to a great vacation spot. It could be fun.

Sponsored by Orlando.com

Poetry Thursday

You can find the traveling Poetry Thursday at Left Handed Trees.

My poetry offering is here.

Wednesday, September 05, 2007

High-dosage Prednisone Use

This picture is of me about three months or more after my diagnosis of Wegener's Granulomatosis. In the first three months, I was on I.V. Cytoxan (1400 mg) and 100 mg. of prednisone.

If you look closely at the picture, you will be able to see the the classic signs of high-prednisone use: moon-face, belly, double-chin, and humped back. At this time, I was dizzy, tired, and nauseous. I was also dealing with the psychological symptoms of high-prednisone use: paranoia and voices.

Because of my cytoxan use (and now imuran), my hair which is gold in this picture has changed to a dirty blonde. If you read my reflections on hair, you will realize how traumatic this has been for me.

Now I am on 5 mg. of prednisone. I am beginning to fit into my clothes again. Life is getting better and better.

So those of you who have been searching on google about prednisone and side-effects, send me an email. We'll talk.

Advances in Immunosuppressive Therapy

Marder W, McCune WJ.
Division of Rheumatology, Department of Internal Medicine, University of Michigan, Ann Arbor, Michigan.

Despite the intense interest in biological agents, traditional immunosuppressive drugs remain the mainstays of treatment for systemic rheumatic diseases that involve the lung. Herewith, we review the mechanism of action, administration and clinical use of immunosuppressive drugs, including cyclophosphamide, chlorambucil, azathioprine, methotrexate, leflunomide, cyclosporine, and mycophenolate mofetil. Emphasis is placed on the use of sequential therapies, in which cyclophosphamide is used to induce a remission, and then drugs such as methotrexate or azathioprine are used to maintain the remission.

In addition, new regimens that avoid the use of cyclophosphamide for severe forms of vasculitis such as Wegener's granulomatosis have been recently described. Finally, significant benefit has been found when interstitial lung disease due to scleroderma is treated with cyclophosphamide.

This represents the first evidence that immunosuppressive drugs are efficacious in rheumatic disease-associated interstitial fibrosis and provides a rationale for developing therapeutic regimens that optimize efficacy and safety.

PMID: 17764058 [PubMed - in process]

My Analysis: Without the experimentation of rheumatologists, WG patients would still be dying at an extremely high rate. I don't know which doctor experiemented with cyclophosphamide (cytoxan) on the first WG patient in the 1970s or 1980s, but he saved us.

Part of the modern treatment for this disease is to use cyclophosphamide to suppress the immune system of patients who are in danger with this disease for about six months. After the first six months, the patient is put on methotrexate or azathioprene. I have been on both of these medications and I did better on azathioprene than on methotrexate. Some people do better on methotrexate.

Although this is the first evidence of the safety of these regimens, as patients we have already known and are grateful for these medications because our lives have been lengthened from 6 mos. or less to almost 30 years.

I have survived almost 5 years with this disease.

If You are Planning a Vacation In Orlando Area

In 1988 I was in Orlando for Navy boot camp. For a successful completion of bootcamp, we were given two discounted tickets to go to any theme park. I picked out "Sea World" and "Epcot ® Center."

My friends and I had a blast. We were in the Navy white dress uniform. I was so afraid that I would get something sticky on it like ice cream or cotton candy. But it was sunny and the rides were great.

Orlando still has the same great places. You can get your Disney World Tickets at OrlandoFunTickets.Com. They have discounted tickets for Disneyquest, Downtown Disney Pleasure Island, Disney's Typhoon Lagoon and Blizzard Beach Water Parks. They aslo have discount tickets for all Orlando dinner shows such as Arabian Nights, Medieval Times, and Pirate Dinner Adventure.

But, what excited me was the Busch Gardens in Tampa Bay. I have always wanted to see The Serengeti Plain, the largest free-roaming animal exhibit in the U.S. I am sure I could get my husband on the train.

Sponsored by OrlandoFunTickets.com

Wegener's granulomatosis in 2 adolescents

[Article in Dutch]

van der Aa LB, van der Heide M, Sprikkelman AB, Brinkhorst G, Tytgat GA, van den Berg JM.

Afd. Kindergeneeskunde, Emma Kinderziekenhuis AMC, Amsterdam. l.b.vanderaa@amc.uva.nl

Wegener's granulomatosis was diagnosed in 2 boys, aged 17 and 16 years. The first presented with pain in the right flank, without coughing or dyspnoea. He did have peaks of fever, night sweats, weight loss, headache, and epistaxis. The second presented with progressive dyspnoea, haemoptysis, malaise, and headache. Because an infection was suspected, both were given antibiotics, but without effect. Chest X-rays revealed infiltrative abnormalities. A lung biopsy in the first patient and a nasal biopsy in the second revealed a granulomatous inflammation, and both patients had an elevated titre of antineutrophilic cytoplasmic antibodies (ANCA), with a cytoplasmic pattern, and an elevated result of the ELISA test for antiproteinase-3 (PR3). Both patients recovered after aggressive immunosuppressive treatment. Wegener's granulomatosis is a systemic necrotising vasculitis, mostly localised in airways and kidneys. The disease is very rare in children, but may be life-threatening.

Therefore, in children with pulmonary problems resistant to antibiotics, it is important to consider a diagnosis of Wegener's granulomatosis and test for ANCA and PR3.

PMID: 17763812 [PubMed - in process]

My Analysis: WG can happen in the very young as well as the very old. One problem with reading older information of this disease is that it implies that only older people get the disease. The last statement of this abstract is important. "Children with pulmonary problems resistent to antibiotics . . . test for ANCA and PR3."

Tuesday, September 04, 2007

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Walking in the World

There are two reasons I walk: for health and for creativity.

As I walk for my health, I feel my lungs fill with air, I feel my body tighten and release, and I feel myself--one step at a time--become part of the world around me. Near the end of my walk, my lungs begin to release and I begin to breath easily--not in short dizzy bursts.


As I walk for my creativity, my body becomes second to the birds calling around me. I see finches, chickadees, and quail. They fly around me. I see roses, grass, and sage. The cars and trucks around me become transparent as I hear the wild wail of a dog, protecting its territory.

My feet slow as I feel the curling roots of trees under my feet. My feet slow as I breathe deeply.

I become part of Father Sky and Mother Earth. Peace. peace. peace.

Why I Feel Strongly About Alzheimer's.



When my Grandma Bagley started to be forgetful, we just thought that it was aging. Her doctor said it was hardening of the arteries. But, in her 70's and early 80's before she died, she needed to be watched and cared for because she didn't even know when she had eaten. She eventually died in my father's arms. In her case, the disease was never diagnosed and was very benign.

But my Grandma Helen was a different story. The disease went immediately into dementia and paranoia. Her life turned from a quiet life to trauma. After she tried to run my mother down with her car, the State of Utah took over her care. They gave her medications that completely burned her brain out. Once she could not walk or eat by herself, she was given back into my mother's care. This grandmother spent the rest of her days in a wheelchair, drooling on herself.

The reason I would like to see a cure or at least help is because I want to see these people live their last years of their lives with dignity and not the trauma that I saw with my grandmother. And yes, I am kind of afraid that I might follow ... It would be fatal to me to have Wegener's Granulomatosis and Alzheimer's.

Memory Walk sponsored by the Alzheimer's Association provides the public with the opportunity to raise awareness and funds for Alzheimer care, support, and research. There are at least 5 million people in the U.S. affected with this disease.

In my area, Carson City is having a 4.23 mile walk around the historic Carson Capitol grounds. This walk will include seeing the Capitol building, through the historic section of Carson City, and near the Governor's mansion. In Reno, there will be a 17.96 mile walk on the Bartley Ranch Regional Park.

The Memory Walk is nationwide. Sign up early at the Alzheimer's Association.



Sunday, September 02, 2007

Sunday Scribblings: The End

The writing prompt today is "The End." I was going to post one of my poems about death called "To The End," but something happened today that put death on my balcony.

Yesterday, there was this little finch. He looked like all the other finches, he ate like all the other finches, but he didn't move or preen. He would stare into space for a long time. I thought he was napping. My hubby thought he was thinking.

What we didn't know is that he was dying.

This morning my husband sat and talked to this little bird as he gasped his last. My husband put him in a plastic bag and buried him.

Why am I crying? He was just a little bird. It happens to all of us. We only knew him a day. But still the tears leak from my eyes.

I hope that he did not feel pain.

I hope he was calm to the end.

Chronic Fatigue In Rheumatological Diseases

1: Neuro Endocrinol Lett. 2007 Jul 11;28(4) [Epub ahead of print]Links

Not in the mind but in the cell: increased production of cyclo-oxygenase- 2 and inducible NO synthase in chronic fatigue syndrome.Maes M, Mihaylova I, Kubera
M, Bosmans E. MCare4U Outpatient Clinics, Belgium.

Chronic fatigue syndrome (CFS) is a medically unexplained disorder, characterized by profound fatigue, infectious, rheumatological and neuropsychiatric symptoms. There is, however, some evidence that CFS is accompanied by signs of increased
oxidative stress and inflammation in the peripheral blood. This paper examines the role of the inducible enzymes cyclo-oxygenase (COX-2) and inducible NO
synthase (iNOS) in the pathophysiology of CFS. Toward this end we examined the production of COX-2 and iNOS by peripheral blood lymphocytes (PBMC) in 18 CFS
patients and 18 normal volunteers and examined the relationships between those inflammatory markers and the severity of illness as measured by means of the
FibroFatigue scale and the production of the transcription factor nuclear factor kappa beta (NFkappabeta) . We found that the production of COX-2
and iNOS was significantly higher in CFS patients than in normal controls. There were significant and positive intercorrelations between COX-2, iNOS and
NFkappabeta and between COX-2 and iNOS, on the one hand, and the severity of illness, on the other. The production of COX-2 and iNOS by PBMCs was
significantly related to aches and pain, muscular tension, fatigue, concentration difficulties, failing memory, sadness and a subjective experience of
infection.

The results suggest that a) an intracellular inflammatory response in the white blood cells plays an important role in the pathophysiology of CFS; b)
the inflammatory response in CFS is driven by the transcription factor NFkappabeta; c) symptoms, such as fatigue, pain, cognitive defects and the subjective
feeling of infection, indicates the presence of a genuine inflammatory response in CFS patients; and d) CFS patients may be treated with substances that
inhibit the production of COX-2 and iNOS.

PMID: 17693978 [PubMed - as supplied by publisher]

My Analysis: Although this is about chronic fatigue syndrome, this analysis is also about Wegener's Granulomatosis (and possibly other rheumatic diseases.) Right after my first crisis with WG, I was fatigued from only a little effort. I could take a shower and then need a four-five hour rest. Even after eating I needed a nap.

As I my immune system became suppressed and the inflammation receded, I could do some things and only needed a half hour naps. I wonder if part of this response in WG patients are in the cells as suggested by this study on CFS.

Saturday, September 01, 2007

Labor Day Weekend & Grilling

I just realized that my parents didn't grill.

I have learned about grilling from watching my husband prepare the fire--charcoal and newspaper in a cylindrical can. He lights it with a cigarette lighter. Eventually (after the newspaper burns away) the charcoal glows.

After about 30-45 minutes, he is ready to throw on the potatoes wrapped in aluminum foil. About 45 min. to an hour later, he throws on the steaks. We pick a barbecue sauce (he has his own BBQ sauce recipe, but...) to pour on the steaks as they sizzle on the grill. (There are no GAS grills in our house... GAS is a dirty word.)

The food is to die for.

My parents didn't grill. They would dig a pit near the house. We would find rocks (there were plenty of them) to put around the pit so that the fire would not spit and set the bushes on fire. We lived in the northern desert of Utah. It was not as hot as Nevada, but it could get hot some years.

Once the coals were hot enough, we would put our vegetables and potatoes wrapped in aluminum foil under the coals (we would put butter with the vegetables). After an hour or more, we would check the vegetables and potatoes. A little squeeze ... and we knew they were soft enough to eat.

I am sure that if we had put a grill on top of the fire, we could have cooked meat. But, at the time, my parents were vegetarians.

I am an avid carnivore now. Don't ask and I won't tell. (My nephrologist is trying to make me into a vegetarian again... kidney issues.) Thankfully I am doing well disease-wise. I would rather quit drinking beer (which I have) than quit eating steak.

So have a restful Labor Day... for those who work. And, I'll watch the hubby grill.