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

Thursday, December 27, 2007

Benazir Bhutto Assasinated

Story is here.

Pakistan is in play. Democracy? or Al Quaida?

Update: I was watching the T.V. news updates on Bhutto's life. There were a few interesting facts that have come to light:

1. She knew that she might be assassinated. She left a note with her suspicions of who would kill her.

2. She was so caught up in the moment that she forgot how dangerous Pakistan was for her (a secular woman politician).

3. She had many enemies (Taliban, Al Quaida, and the Pakastani Army).

And lastly, she was elected twice and left Pakistan twice under charges of corruption (both times). My take on the corruption charges from watching Panamanian elections is anyone who comes out richer after a political career is corrupt.

Monday, December 24, 2007

Christmas Eve Caroling



One of our family traditions (besides bickering and fighting during the holidays) started when we lived in Salt Lake City, Utah near the grandparents. We would gather at my grandparents home on Christmas Eve with all the cousins, uncles, and aunts and sing Christmas carols.

When we moved away from them, we kept up the tradition. We would go from house to house and sing our favorite carols--Christmas Bells, O Holy Night, Silent Night, and Rudolf the Red-nosed Reindeer.

My mother was a trained dramatic soprano. My father sang baritone. The children were divided into alto and soprano. We could sing. And it was the only time that we were in "tune."

I do miss those Christmas Eves. So in honor of those great times, I found the lyrics to a great Christmas song. Merry Christmas, Happy Holidays... to all of you.

Caroling, Caroling

Caroling, caroling, now we go
Christmas bells are ringing
Caroling, caroling thru the snow
Christmas bells are ringing

Joyous voices sweet and clear
Sing the sad of heart to cheer
Ding dong, ding dong
Christmas bells are ringing

Caroling, caroling thru the town
Christmas bells are ringing
Caroling, caroling up and down
Christmas bells are ringing
Mark ye well the song we sing
Gladsome tidings now we bring
Ding dong, ding dong
Christmas bells are ringing!

Caroling, caroling, near and far
Christmas bells are ringing
Following, following yonder star
Christmas bells are ringing
Sing we all this happy morn
"Lo, the King of heav'n is born!"
Ding dong, ding dong
Christmas bells are ringing


Other Christmas Lyrics are found here.

Wednesday, December 19, 2007

Name That Alcohol

95%ALCOHOLIC

Shamefaced. Actually, I know much of this from my Navy years. At this time and because of my medication, I am not allowed to drink at all. If I did drink, it would be red or white wine.

I do not like Gin.

It just goes to show that memory (another reason I can't be an alcoholic) is getting better after I changed from cytoxan to imuran.

Wash Day

We live in one of the older apartment complexes that not only doesn't have washers and/or dryers, but also doesn't have any hook-ups for said washers and dryers.

It is a big production for me. At least two or three times a week, I gather up about two to three batches of clothes, walk down a flight of stairs, put the clothes in the car, drive to the laundromat, and then carry the clothes into the laundromat.

I really dislike doing the wash when the outdoor temperature is under 33 degrees. One day, I had only walked on the side-walk with ice on it (no clothes in hand). I slid and hurt my knees. I couldn't walk without pain for a long long time.

I am not complaining . . . much.

When I was growing up, we lived far away from electricity. We had to haul in our drinking water in big barrels. I used to wash the clothes in buckets and then hang them out to dry on the lines. I could spend days handwashing and handscrubbing those clothes. At the time there were six children and two adults.

So yes, it is much easier now. However, as I stand at the top of the stairs, I carefully feel for the next step. I know that the capricious wind is going to slam into my back and I will fall thirty steps, breaking my neck.

I know. I know... I have a huge imagination.

But I go through this scenario everytime I creep down those stairs with a basket of clothes in my hands, which is why I only take two or three batches at a time.

Carrying the clothes up the stairs is not quite so nervewracking. I am only tired, not scared.

I know. I could wait for the weekend and have my husband carry the clothes down. But, he works all week. He takes care of me. This is one of the chores that I have taken on so that I can care for him. It gives me self-esteem.

So I will take two batches of clothes down the stairs tomorrow. I will sit in front of the dryers and watch the clothes spin. I will fold them and put them away.

And, I will feel good. I accomplished something.

Sunday, December 16, 2007

Sunday Scribblings: Dance

The first time I went to college, I had a hard time chosing between music and dance. I am the girl that would stand in front of an orchestra recording and direct the music.

My mother had a music wand.

It would point, jab, and direct. It was magic. But--

I also loved to move to the music. I had rhythm. At six, I begged to be involved in dance. I wanted to be a ballerina and twirl on my toes. I was influenced by the Nutcracker Suite. Even today, the music and dancing is superb.

But it was a firm "No" from both my parents.

There is an age limit for professional dancing. And I started too late to perform. I can't regret it because I cannot blame myself.

I learned to love dance when I met Hyrum. Hyrum had been dancing ballroom from the time he was fourteen years old. At one time, his team went to Las Vegas for a contest. They did well for a small team from a very small town (10,000 people at the most including the surrounding rural areas).

I walked into one of those church dances and saw this guy with the moves. He could float. He could dance. All the girls were asking him to dance. I was in awe. Before, dance was a single performance. Remember, I really loved ballet.

And, this was the first time that any man had held me by the waist and masterfully turned me in time with the music. I was in love.

Now, when I look back, I wonder if I was in love with the man or the dance. I thought it was the man. I found out that it was the dance.

I don't dance anymore. I am too heavy for the lifts. My legs do not want to turn and I am not limber anymore. But, I still watch professional ballroom dance. I float on clouds--soft and steamy.

Wednesday, December 12, 2007

My Monstrous Personality

You Are a Ghost

Mysterious, independent, and often unseen - you always do things your own way.
You are introverted, shy, and even a little secretive.

People are dying to know you better, but you're a difficult person to know.
A lot of your contributions to the world are left invisible and unfelt.

Your greatest power: Blending in really well

Your greatest weakness: Being too passive

You play well with: Witches


About me: Ummm... ghastly or ghostly. I can blend in when I want to. And, then boom you wonder why you didn't notice me because I am all over you. And, it's all over except the screaming.

Also, a couple of changes and I could be a werewolf. LOL

Boo!

Tuesday, December 11, 2007

Bloody Mary: a "Jack" Daniels Mystery

By J.A. Konrath
ISBN: 0-7868-9074-6

Before I get into the book review, I want to mention that J.A. Konrath has a blog called A Newbie's Guide to Publishing. It has some good stuff on the business side of writing. It is very good and I recommend anyone who is into writing and publishing should check out his blog.

Lt. Jacqueline "Jack" Daniels, a murder detective, receives a report of excess body parts in the Cook County Morgue. Even worse these body parts are accessorized with Jack's handcuffs.

I won't tell you more of the plot, just that it keeps you reading. I did enjoy the humor. It was like reading an old friend. My husband has the same type of humor, so I had some real fun with his descriptions and laugh-out-loud humor. I don't usually find it in a murder mystery.

I would recommend reading this book. And I give it 4 stars.

Monday, December 10, 2007

Alzheimer's Foundation AFA " Your Time to Care"


My husband and I were given the opportunity to watch the Alzheimer's DVD "Your Time to Care" yesterday. It was a well-written and edited DVD to help caretakers with patients and family members with Alzheimer or dementia.

My husband wished he had known much of the information on this DVD. Why? Because the first year I had Wegener's Granulomatosis and was going through the treatment, I had dementia. Dementia or something similar...

You see, I had a severe reaction to prednisone. I was on an extremely high dosage (about 100 mg) for over three months. Between 100-60 mg., it was like someone had hit me over the head with a baseball bat. My husband had to lead me everywhere including the bathroom to use the toilet and the kitchen to eat. I was mostly in a trance.

When I reached 60 mg., my brain started to wake up a little. I began to have delusions (someone was out to get me). According to the Alzheimer DVD, delusion is a common symptom of dementia. Many of my beliefs were false. When I became more myself, I had to run these beliefs by my husband to see if they were true. He would tell me no. And because I trusted him, I would try to let them go.

Near the end of the day, I would become extremely tired. Because I couldn't remember what someone said to me about 30 seconds later, I would write down everything everyone said. I would keep practicing my brain. In the DVD, the AFA has noticed a symptom among dementia patients. Near the end of the day, many dementia patients become excessively tired because they have been trying to remember. They begin to have tantrums as the sun goes down, which is exactly what was happening to me. I would black out and find myself weeping in our bedroom. I wouldn't know why.

Also, I had another symptom of dementia while I was on prednisone. The symptom is called eloping. (I also wandered). I felt caged. Thankfully for my husband, I was also dealing with kidney issues and problems with my Wegener's so I was too tired to go far. I would walk out the front door and wander about 10-20 feet. He would search the entire house for me and finally find me outside. He would scold me.

My husband admitted that he would have treated me differently if he had known that I would have these reactions to prednisone. Getting completely off this medication has not been an option for me. And, after seeing the DVD (he watched it very closely) he said that he has gained some insight into my actions at that time.

I have been fortunate because once I went to lower dosages the symptoms of dementia mainly disappeared. But sadly, there are many people out there with Alzheimer's and with dementia that need your help.

Since it is the holiday season you can shop for this DVD or other gifts for caretakers (or patients) that could use help. Caretakers of dementia patients have the hardest role of all. They see family members become unruly children because of the damage to their brains.

If you don't want to buy a gift then donate to the AFA. All proceeds benefit the Alzheimer's Foundation of America who's mission is to provide quality care for quality of life to those who suffer from Alzheimer's.

Although finding a cure for Alzheimer's is important, it is also very important to help those who are suffering from this disease.

So this holiday season, remember those who need you the most. Merry Christmas, Happy Hanukkah, and Happy Kwanzaa. And Happy Holidays!

Sunday, December 09, 2007

Sunday Scribblings: Competitiveness

The few times that I tried to compete in physical sports, I had a bloody nose from trying to catch a softball, football, and volleyball. Or I put my back out by pitching softball. That time I spent three days lying on the floor moaning. Or I hurt my knees jumping. I wanted to win. I wanted to beat those naturally physical players. In the course of trying to win, I hurt myself badly.

So yes, I am highly competitive. I have learned to redirect my competitiveness to cerebral activities. For instance, I went back to college in 1998. I worked hard on homework. I worked hard on trying to understand concepts. I was a natural writer. So, I had a 4.0 average for two years. And, when I graduated, I was the symbol of academic performance.

Unfortunately, when I started my Master's Degree in Education, I became ill. Between the illness and the medication I almost didn't make it. But it was that will to compete turned into that will to live. Eventually I went into remission. And, because of the medication (cytoxan) I have lost some cognitive function.

Once again, I have learned to turn this competitiveness to other venues such as survival. I have turned this competitiveness to determination to write the best I can. I now have problems with grammar. I cannot see mistakes that used to be obvious to my eye. I cannot see my spelling errors. And, my mind makes puns that I do not see until I re-read a piece.

I cannot compete with myself anymore. I have learned to soften my sentences. I have learned to go with the flow. Orwellian sentences are only used to make a point or not at all.

What has changed in me? I am not so infatuated with brilliant language. I have learned to "get 'er done" with simplicity.

And in return? I have been given the gift of the fictive dream.

Friday, December 07, 2007

Let it Snow

"Oh the weather outside is frightful."

And it is 37 degrees. But I am sitting here in my apartment watching thirty or more finches, warblers, and chickadees eating sunflower seeds and cheeping.

I may have to put more seeds out.

On another note, one of my friends sent this very inspirational story about a child golf prodigy. This child's swing has been compared to Tiger Woods. He started playing golf at about three years old. But there is a lot more to this story. He had cancer.

So wishing you all a fun holiday season. And, enjoy the snow. I will.

Sunday, December 02, 2007

The long and winding road from silica exposure to silicosis and other health effects

Technological advances over the past half century, including wet drilling and improved ventilation, have contributed to substantially reducing the occurrence of silicosis among miners and other dust exposed workers. Hundreds of cases are, however, still identified each year in Europe and the USA,1,2 and silicosis is a major threat for workers in developing countries. Low salaries and less restricting and/or less enforced occupational hygiene standards have attracted many environmentally and occupationally demanding productions,3 and facilitated mining initiatives in developing countries.4

On the other hand, the "reappearance" of silicosis in wealthy western countries has resulted from the extension of occupational health surveillance to previously under scrutinised small or family owned businesses, and the immigration and illegal employment of non-unionised workforce from developing countries. Furthermore, the progressive clearing of the dark and thick cloud of silicosis cases, has been accompanied by the emergence of other diseases such as lung cancer, . . .

If you are a member, you can read the full text here.

My analysis: One of our WG patients has been studying the effects of silica exposure through the reports like these. One of the known triggers for WG is silica exposure. However, it is one trigger. Many WG patients do not know what triggered their disease. I don't know what triggered mine although I think that organic solvents was part of my downfall.