Sierra Sage

It's my birthday

2009-08-19T09:15:00.000-07:00

And, I have survived another year.

More than anything I am grateful that my doctors are pro-active about my health problems. Wegener's Granulomatosis can be a scary disease because it can affect any organ in the body.

I am also grateful to my husband for taking care of me when I was extremely sick. As for the present, he is trying to get me back on my feet again mentally and physically. After taking chemo drugs and prednisone, it can be a long road back.

It has been six years and eight months since I was diagnosed with this disease. I am still kicking.

Clipart from .iband.com

How Does Vasculitis Affect You?

2009-08-14T13:04:00.000-07:00

Guest Post by Kat Sanders

Vasculitis is the common term given to a group of diseases that is characterized by the inflammation of the blood vessels. It is pretty rare, but if it affects you, it could become serious depending on the extent to which your blood vessels are affected. In general, Vasculitis patients’ white blood cells penetrate the walls of their blood vessels and cause damage to the tissue that surrounds them. Besides this, they also obstruct blood flow to the organ in which the vessels are located.

Vasculitis is sometimes caused by an infection or as a side-effect as an adverse reaction to a drug. But in most cases, no one knows why it occurs and why the body’s own immune system turns against it. Although there is no known cure for Vasculitis, it is not always life-threatening. But it is still dangerous because:

Not many people know that such a disease exists and there is a high probability that they will not recognize the symptoms when they start to show.
It may take up to a year to correctly diagnose Vasculitis through physical examinations, X-rays, blood tests and blood tissue samples.
The symptoms are not always present and so, may be misleading.
People with this disease sometimes look very healthy.
It can only be managed and not cured.

The severity of the disease depends on the size of the inflamed blood vessels and the organs in which they are located. Inflammation in vessels leading to your heart, lungs, or kidneys may be more serious and even lead to death if not managed properly.

Vasculitis is said to slightly affect men more than women and Asians more than any other community. (*Editor note: In Europe and the U.S., vasculitis affects mainly Caucasians. China has the fastest growing vasculitis sufferers at this time.) If you think you or anyone you know may be exhibiting a few symptoms of this disease, do not hesitate to see a good doctor.

By-line:
This article is written by Kat Sanders, who regularly blogs on the topic of online engineering degree at her blog The Engineering A Better World Blog. She welcomes your comments and questions at her email address: katsanders25@gmail.com.

Editor notes by Cynthia.

Latest News in a WG Patient's Life

2009-08-10T07:45:00.000-07:00

This latest news has been under the radar for about four years. My immune system showed some problems after I finished a course of cyclophosphamide (oral). I took this drug for six months before I went to imuran.

Anyway, I have been in remission for awhile, but my doctor has been more concerned about keeping my disease under control. In June 2009, my doctor finally decided that I needed to have some lab work to further understand some of my WBC numbers. Three of my gamma globulin numbers were so low that we decided that I should see an immunologist.

Since I deal with Tricare, I need to have a referral to see specialists. In late July, I saw an immunologist. One of the problems with dealing with an immunologist in a sparsely populated state is that the immunologist does not have the experience dealing with my type of problem. He did have the clinical background so we are doing several tests to see how my immune system is reacting, which includes blood tests and a patch test.

I will know what to do after the tests in late August. The immunologist is in communication with my rheumatologist, which is a good thing.

I still don't know what to think about this latest development. It is obvious in my limited experience that the chemo has caused this problem. I have talked to other patients who have had other problems caused by continued use of cychlophosphamide. (cytoxan)... One patient had kidney cancer and the other patient had a slowed digestive tract.

It seems from my viewpoint that if I have problems again with Wegener's that I will have to use another drug to get it under control. I don't want to borrow trouble... but, this drug (cytoxan), which is the gold standard in keeping WG under control might not be a good thing for me.

It has been six and a half years since I started this journey with Wegener's Granulomatosis. I still feel okay. I am still trying to stay well or as well as I can. I am grateful that I am still alive and still kicking.

Vasculitis: lessons learned

2009-06-22T10:55:00.000-07:00

Here is an important editorial by Philip Seo in the "Current Opinion of Rheumatology."

Very important points in this editorial are that cychlophosphamide is the best current treatment for run-away vasculitis, that trials outside the US have provided important information about vasculitis disease, and that the phenotype (or body type) of the individual patient needs to be taken into consideration when treating vasculitis.

My opinion: It sounds like that rheumatology (treatment of such disease like vasculitis, arthritis, etc) is learning some valuable lessons in treating my disease and others in the same category.

Germany Vol. One Photos

2009-06-05T08:43:00.001-07:00

Germany Stock Photos (Landstuhl, Kaiserslautern, Spangenberg, etc.)

The photo on the left is part of the photo package.

80 photographs in TIFF format. You can edit any of these formats to fit your project. Because the photos are in TIFF format, the pixels have depth and clarity not found with JPEG format. Each photo is close to 9 meg. The file contains information about each photo.

The pictures were taken with a CD Mavica digital camera by Edward "Otto" Tune

These eighty photos are on a Light Scribe CD in a paper envelope. You can buy them on the sidebar. If you like this item, we may be able to offer other photos from this same photographer, including trains, desert scenes, etc.

Photos come from these areas in Germany:
Kaiserslautern: The German word Kaiserslautern means the Kaiser's purity. Kaiserslautern received this name because it was the Holy Roman Emperor Frederick Barbarossa's favorite hunting and fishing area. Another nickname for Kaiserslautern is Barbarossa town, referring to the same Emporer.

Several towns around the city have Celtic tombs (Rodenbach, and Miesau) that are about 2,500 years old. Plus there are old military enforcements dating back to WWII. Just a few kilometers from the city is an active military base - Ramstien AFB. This base still has several soldiers, airmen, and NATO soldiers that live and work there.

Landstuhl: Landstuhl is the German word for county seat. This town is filled with government buildings for the Rhineland-Palantine area. The largest military hospital in Europe (Landstuhl) hospital is near the city.

Nanstein Castle: Burg Nanstein is also called the Landstuhl castle. This castle was built by the Holy Roman Emporer Barbarossa in 1160. The castle was taken by the Knights of Sickengen through marriage in 1474, who were Protestants. Franz Von Sickengen, trying to put the area under Protestant rule attacked one of his neighbors. In retaliation three Princes of the Holy Roman Empire (Catholic princes) attacked the castle and killed Franz Von Sickengen (1523). His sons and grandsons rebuilt the castle, but it was blown up by the Palantine Elector in 1668.

Since 1856, the Sickingen family and local members of the community have excavated these ruins. The inner courtyards have become a popular place for festivals and rock concerts during the summer. It has some beautiful views from the third level of the castle

Also, Spangenberg and some Roman ruins found along the autobahns.

Terms of Use: All images are in a TIFF format and can be modified for commercial or non-commercial use. Once modified please include a photo credit, such as "Photo courtesy of Edward "Otto" Tune."

If you want to redistribute these photos (coffee mugs, mouse pads, etc), please contact the photographer for permission at ottotune@gmail.com.

Long-term management of patients taking immunosuppressive drugs

2009-06-03T07:07:00.000-07:00

Denise C Hsu, Immunology Registrar, Department of Immunology, Concord Repatriation General Hospital, Sydney; and Constance H Katelaris, Professor, Clinical Immunology and Allergy, University of Western Sydney

Summary

The number of patients taking immunosuppressive drugs for the management of autoimmune inflammatory conditions is increasing. The general practitioner needs to be active in preventing, monitoring and managing the adverse effects of these drugs even long after the treatment has ceased. Monitoring is required because immunosuppressive drugs increase the risks of infection, malignancy, cardiovascular disease and bone marrow suppression. Some drugs have additional risks which require specific monitoring. Vigilance is needed as adverse effects may have atypical clinical presentations.

The rest of this information is here.

My comments: Another problem with long term immunosuppressive drugs like cychlophasphamide is that the patient can only take this drug so long without adverse affects. It can cause cancer in the bladder and possibly the kidneys. So the doctor (rheumatologist or gp) need to keep this in mind when treating any chronic disease and especially vasculitis.

What you don't know can kill you!

2009-05-28T12:30:00.000-07:00

A family turns its pain, tears into a weapon against rare disease

BY KIMONE THOMPsON, Senior reporter Special Coverage Unit

THEY say what you don't know can't hurt you. But in the case of the Creary family, who lost a loved one to the little known disease vasculitis, ignorance proved deadly.

If they had been better guided by the medical doctors from whom they sought attention, their only son Ricardo Lee could have had more time with them, or at least have been more comfortable in his last days, the family is convinced.

"That has been painful, very, very painful because we sought the best medical treatment ever," says bereaved mother, Olive Creary. "It wasn't a case where he was ill and nothing was done. We went to Florida like three times to see the dermatologist, he went to Cleveland, Ohio where the Vasculitis Centre is located (but we didn't know it at the time), and when he wasn't getting any better, there was just no mention of seeing any other specialists.

The rest of the story is here.

My comments: I feel so badly for this family. It is something we tell newly diagnosed patients the importance in having an experienced Vasculitis doctor. Most doctors do not have the experience to treat us.

Familial Churg-Strauss Syndrome in Two Sisters*

2009-05-28T11:33:00.000-07:00

Authors: Naomi Tsurikisawa, MD, Sonoko Morita, MD, Takahiro Tsuburai, MD, Chiyako Oshikata, MD, Emiko Ono, MD, Masami Taniguchi, MD, Hiroshi Saito, PhD, Yukiyoshi Yanagihara, PhD, and Kazuo Akiyama, MD

Abstract:
Churg-Strauss syndrome (CSS) is an uncommon systemic vasculitis with an increase in the number of eosinophils in the peripheral blood and tissues. Its pathogenesis is unknown, and there is no evidence that genetic factors influence susceptibility to this disease. We present a case of familial CSS in two sisters with atopic-type bronchial asthma and negative perinuclear anti-neutrophil cytoplasmic antibody results. We investigated the human leukocyte antigen typing of the sisters and their six living siblings but found no evidence for heritability of CSS. To our knowledge, this is the first report of familial CSS.

The rest of this article is here:

My comments: It has only been recently that there have been reports of familial Wegener's Granulomatosis and now the first case of familial CSS. A few patients including myself point to industrial chemicals, etc for this increase in vasculitis disease. At this time, there is no known trigger for these diseases.

Fishing is good for what ails you

2009-05-27T14:07:00.000-07:00

Will Atkins 27.MAY.09

David Cosner suffers from Wegener's Granulomatosis, a rare and life-threatening autoimmune disease. Gazette writer Joanne Foote has chronicled his struggles in a couple of articles. A graduate of Bowie High School, he started college last fall at Texas State University in San Marcos, and made the Dean's List in his first semester.

David is hooked on fishing and started a fishing club, the Texas Bass Cats, at Texas State. He had to miss a fishing tournament due to a health setback that put him in the hospital over spring break.

The rest of this story is here.

My comments: It is good to hear about Wegener's Granulomatosis patients that are doing well.

American Idol - I've had enough

2009-05-21T12:57:00.000-07:00

There were two years when I loved watching American Idol. I enjoyed Randy and Paula's comments. I adored Simon's testiness. However, that changed when Chris Daughtry was voted off about two years ago.

Chris D. is now a familiar voice on the radio and that year's winner has disappeared into a cloud of obscurity.

I am only going to say this once. And, it is my personal opinion. There are too many teenage girls being allowed to vote. They should have to be 18 to vote. If not, then these teeny-boppers should only be allowed to vote once.

Why? Last night on American Idol (it was the only thing on TV I could stomach), Kris won and Adam lost. No... I have not been following American Idol. And NO I won't be following Idol next year.

So Adam if you ever get around to reading this blog, I think that you have a GREAT future in store for you. You have the voice (resonant and range). You have the charisma. And, you have the looks (fallen angel).

When I saw you sing the songs of Queen and rocked with Kiss, I was totally amazed. The future is at your feet.

I was even impressed with your good sportmanship. In a few years, when everyone has forgotten the American Idol winner of this year, you will be up there on stage.

Living in the shadow of a silent killer

2009-05-20T10:20:00.000-07:00

Michelle Hopkins, Richmond News
Published: Friday, May 15, 2009

Looking at fitness instructor Cheryl Sharpe, what you see is a slim, attractive woman who exudes health and vitality.

However, her healthy exterior belies the fact that the 34-year-old lives with Vasculitis, a rare disease that could kill her. Vasculitis is a family of 15 rare diseases.

The rest of this story is here.

My Comments: The reason that I like this story is that if you talk to any WG patient, they have a much similar story. Usually they had good health until suddenly they began to get fatigued with lungs, sinus, and/or kidney symptoms. WG is an auto-immune disease, which means that something triggers the immune system to start attacking the body. WG is still a mystery disease because the researchers still do not know what triggers it.

In my case I used to hike up and down the hills and mountains of Germany. When I became ill, my doctors were convinced that if I hadn't been in such good health that I would have died from the disease.

Now I am chunky from the meds. But, when you look at me, you would not realize that I have a chronic disease.

UNC Kidney Center

2009-05-12T07:44:00.000-07:00

UNC Kidney Center-Learn about kidney diseases such as Anca Vasculitis and FSGS, get to know our faculty and staff, research our fellowship program, and much more.

First paragraph on the site (the title of this post is linked to the kidney center):
Welcome to the ASSIST Study web site! The purpose of this web site is to keep you updated about the study results. Recruitment and data collection for the first survey ended in February, and I anticipate that data collection for the second survey will end in April. You may want to visit this page periodically because we will post result updates during the coming year.

My Comments: I participated in a survey last year, but I am not sure if it was this one. Anyway since I have kidney disease associated with my Wegener's Granulomatosis, I am pleased when certain organizations and medical institutions are interested in helping vasculitis patients. Because we are considered an "orphan disease" (very few people get this disease), most of our drugs are not designed for our disease. Thankfully a few of the drugs for RA can be used to help us.

So yes I am grateful when I find these types of services.

Earthpaint opens retail shop to sell all-natural products

2009-05-11T09:44:00.000-07:00

Anne Fitten Glenn • published May 10, 2009 12:15 am

WEST ASHEVILLE – Tom Rioux inadvertently stuck his hand into a can of paint labeled “nontoxic” while helping paint the Zen Center of Asheville a few years ago. Soon after, his hand swelled up to the size of a small melon, and he decided then and there to develop paints truly devoid of toxic chemicals.

My Comments: Tom Rioux has a rare vasculitis disease called Wegener's Granulomatosis. He thinks that his disease was caused by 25 years of house painting. So to help other painters, he has started a company that sells real non-toxic paint.
Great job, Tom!

The blog title links back to the newspaper article.

My Vasculitis Story

2009-05-09T07:15:00.000-07:00

The entire story is linked on the right column if you ever want to read it again. My story is neither worse nor better than thousands of other Wegener's Patients. I have left out a few details, but I think I wrote the important moments.

If you suspect that you have a Vasculitis disease, the Vasculitis Foundation has a list of doctors who can diagnose you. Also, the volunteer staff at the Vasculitis Foundation are very helpful.

My Vasculitis Story: Not the final chapter

2009-05-08T09:22:00.000-07:00

This morning I was listening to "How far is heaven" sung by the Los Lonely Boys. I love the song, but I am pretty happy that heaven is much farther away today than it was that first year.

After I finished 12 courses of IV cytoxan, my doctor put me on methotrexate. This medication had its own problems. I was on 12.5 mg, which is a low dosage, but my stomach could not tolerate it. I have talked to other patients who have been on methotrexate and they are on 2x the amount I was. My doctor kept me on this medication for a year, but it didn't hold the inflammation.

At the same time I was started on lisnopril for my kidneys and high blood pressure. My nephrologist in Las Vegas Dr. Gross, would check me and then shake his head. I was still around 3.0 creatinine level. Plus later in the second year my creatinine levels started to rise (3.3).

Also both my husband and I started looking for jobs. It was a very hard time because my husband had not had a job for almost two years. He had spent most of that time taking care of me. I did get a job, but it was too early for me to work. I started a job with a loan company as a loan officer. I worked for them for six months before I started to decline again.

Back to the lisinopril, I started to vomit every day after I started taking it. I couldn't gain any weight and was still underweight even though I had been on prednisone for two years. Finally, my rheumatologist realized that it was the lisinopril causing my problems. As soon as I got off this med, my creatinine levels started to drop and I quit vomitting. I started to gain weight.

My husband found a job in Carson City. I followed him there.

Just a note: It had been two years and I was still dealing with active disease. I did not go into remission until July of 2007. My disease wasn't even quiet. I was very fatigued. When I was working, I would come home, eat, and then go to bed (around 7 p.m.). I would wake up at 6 p.m. and start again. The only days that I seemed to feel better was on the weekend when I slept most of the days away. As I said again, I was too hopeful about my recovery. I hadn't recovered yet.

In Carson City I became ill again. This time I had secured my rheumatologist (Dr. Scully) before I moved. As soon as Dr. Scully looked at my labs he was really worried. He put me on oral cychlophosphamide at 225 mg for six months. Plus my prednisone went up to 40 mg. (I talked him out of 60 mg because of my reactions of before) And yes, I had some toxic reactions to the meds near the end of the six months.

Even more, I began to gain weight. My nephrologist told me that I would have to control my eating. I finally had to tell him that I was eating less than I ever had before... And since my special kidney diet included white rice and white bread, these items were not helping my weight gain. I have been vindicated because this year when my imuran was reduced I lost ten pounds almost immediately.

In addition after the second year of WG, I had a tumor in my left breast, which I had to have removed. Thankfully it was benign, but my husband and my doctor were really worried about it. Could it get any worse?

Actually it got better. In the early part of 2007, I began to listen to Cindy about using Omega 3s for inflammation. Up to this time, my rheumalogist was very worried about my inflammation markers. The inflammation had stayed high for almost four years. No matter what type of mediction or combination, the inflammation was too high.

Also, whenever I talked about getting another job, he would ask me if I really wanted to take the chance. It was too easy to get infections, germs, bacteria, etc. from the general population. He wanted me to stay as isolated as I could.

So I began to give Omega-3 a try. I began to take it three times a day. At the same time my rheumatologist changed my meds to imuran and began weaning me from the prednisone again. In one month we saw a significant drop in my inflammation markers. I thought Omega 3. My doctor thought imuran. But, something was working... finally...

Before my doctor wouldn't tell me my chances. But, just a few months ago he said I should live to my 70s and beyond.

In July 2007 I was officially in a chemical remission. We still have scares. The swine flu (any influenza for that matter) comes to mind. Oh yes, and I had shingles. Also, I have had problems with my WBC (white blood count) and RBC off and on through the entire period of six years. If my WBC doesn't change after my imuran was dropped, I might have to take shots... again. I hate shots.

Anyway, thankfully my final chapter is not over yet. I still have many years to live. And maybe you'll see my writings again someday.

My Vasculitis Story: Chapter four

2009-05-07T08:54:00.000-07:00

As you probably remember from the last chapter, my goal was to get to Travis AFB to a rheumatologist who could take over my treatment. When my husband and I reached Travis AFB, we had to reschedule the appointment because of the problems I had had with the meda-vac.

We drove from Las Vegas to Travis AFB (outside San Francisco), which took several hours. I slept while my husband drove. We stopped to eat when I needed to take my medication. When we reached the base, we realized that we needed to find a place to stay. The rheumatogist's nurse was very sure that we would have to stay awhile so that I could get my infusion and get the proper labs and tests. My rheumatolgist wanted to make sure that my travels had not derailed my treatment.

The nurse gave a list of housing options on and off the base. So the next hour we went from place to place looking for an open room or apartment. Finally, we found the Fisher House next to the hospital. They gave us a room. If you know anything about the Fisher House, they have homes at several of the bases so that military families can see their loved ones in the hospital. They don't charge for the service, but do take donations. In my case, they were very happy to help us. My husband had just lost his job, I was ill, and it was plain that we wouldn't be making much money anytime soon.

So if you ever want to donate to a good charity, the Fisher House is one of the best.

Anyway, my husband and I made ourselves useful around the house. In this house there were only two people as staff so they were grateful when I made sure that the dishes were loaded into the dishwasher and that my husband emptied the garbage in and around the house. They even gave us each a polo shirt for our help.

As for the medical services, my rheumatologist lowered my prednisone to 80 mg. and she was able to get my I.V. infusion for the next day. She asked us to stay at least a week so that she could make sure that I was tolerating the infusion. Also, the bad news was that she was leaving the military and starting up her own office back East. She found a doctor in Las Vegas who could continue my treatment.

Just a note. By that time I had been on 100 mg. daily for three months. I stayed on 80 mg. for another three months before I started having severe problems with this medication.

As I look back, the time at Travis AFB was idyllic. I slept, ate, walked, and watched the mist settle on the hills outside the base. Sometimes I had double vision and sometimes I was nauseous, but I was very sure that I would be better soon. When the week passed, I was happy to be back on the road to Las Vegas - not because it was better in Vegas, but because I needed to be warm. I was cold all the time.

Another good news that I received at Travis AFB is that my creatine levels had lowered to 3.0. It is the small things that make you happy when you are this sick.

When we reached Las Vegas, I had to go through tons of hoops before I finally got my doctor even though the rhuematologist from Travis AFB had called ahead. In fact if she had not called I might have had troubles getting a doctor. Soon my doctor realized that I needed to stay away from the general population. Whenever I needed to go to the base hospital near North Las Vegas, I went straight to the Internal Medicine section.

I became scared when my four weeks between infusion was almost up and I still didn't have anyone to give me the infusion. Finally I was given a referral to Dr. Middleton, a rheumatologist in Las Vegas. He had way too many patients, but he did his best for me. He scheduled an outpatient infusion in time.

I want to note that infusions became less and less pleasant for me each time I went through them. My rheumatologist dropped my infusion from 1400mg to 1200 mg because I had lost so much weight. But, after about eight hours after each infusion I would vomit several times before I settled down even though I was given medication to stop the vomitting. By the time I had the sixth infusion, I dreaded going for the infusion.

What helped me most through these trying times was a little dog called Herky. We were staying at my brother's house, and little Herky (the house dog) would cuddle up near the back of my legs. I would fall asleep comforted because I knew that this dog guarded my sleep. I was terrified of sleeping because it was too much like dying. It took me a long time before I was okay with falling asleep.

Also, as the months wore on, my mind began to disintegrate. I lost my short term memory. I became paranoid. I would scream and cry around six o'clock every evening. My husband became afraid of letting me alone. I had thoughts of suicide. My doctor tried to calm me with xanax, but it didn't work.

Then I began to get fuzzy. There is a lot that I don't remember in that year. My behavior was very similar to someone who is having problems with dementia.

One time I thought I had overdosed with one of my medications. My husband took me to the hospital. After a blood test they told my husband that I had not taken any of the medication. They wanted me to see a psychiatrist. I was so upset with the ER doctors and my husband that I tried to jump out of a moving vehicle. My husband was trying to drive and holding my arm. The only thing that saved me was I was too weak to do anything.

Another occasion I walked away from him and he couldn't find me. He was frantic. I had to be watched all the time.

Also I would go into these fugues where I didn't know anyone or what they were saying.

Finally, my husband talked to my internal medicine doctor... And I went into a fugue state in front of him. It scared the doctor so he called my rheumatologist immediately. After they talked, my internal medicine doctor told my husband that I had been on high dosages of prednisone too long. They immediately dropped my medication to 60 mg.

I don't know the exact date, but I think it was around the beginning of August when they started dropping my prednisone. When I went to see my family at a family reunion around the 19th, I had been dropped to 40 mg. It was at that dosage that my personality started to come back. It wasn't until I was weaned to 5 mg or so that I became myself again. And in many ways, I wasn't sure if I was real or not.

This picture is at my family reunion with my husband. If you notice I have all the classic signs of high prednisone use. My face is tight and I have a bulge in the middle of my stomach. My hair came out in clumps from the cytoxan. This is after about eight months on high prednisone usage. At the time I couldn't look into a mirror without crying.

As I began to get weaned off the prednisone, I began to grieve for my lost health. As my husband said, because I had been put on heavy medications, my mind had not had the ability to accept the changes so it took awhile for my neurons to fire again ... I think I cried a lot at that time.

Also I wasn't sure if I would ever be able to write again. I had lost everything. Thankfully I still had my husband. But, even he was really grateful when I began to come back from the abyss.

(story continued tomorrow)

My Vasculitis Story - next chapter

2009-05-06T10:25:00.000-07:00

At this point I should thank my husband. Without the constant care and worry, I might not have survived the first year of my treatment. A lot of things happened including we had to leave Germany in the middle of my treatment. I ended up being medavac'd to the US during the start of the Iraqui war.

Because most of the soldiers and support personnel were getting ready for the Iraqui war, I got lost in the system. I was in one of the bases on the East coast waiting for a flight to Travis AFB, which never came. Eventually I was told that I would have to stay for at least three days or more. They were not interested in my health or my problems.

Fair enough.

My husband was frantically trying to find me and the personnel refused to even give me the phone. I didn't know what was happening. All I knew was that it was March and I was given a room with three other people with a broken window. I knew that I couldn't survive in that room another night. I had taken out all my clothes and wrapped them around me so that I could survive the cold. I had one thin blanket. The other blankets had been given to the injured soldiers on our flight. They had no more... None.

Finally, they offered to take me to a hotel on base. What I didn't know was that I would have to walk a distance to get food. However, it was the first shower that I had seen in two days. I agreed. Then they gave my husband a telephone number to that room. Before I even laid down... he was on the phone. He called a friend that lived not too far from the base... They rescued me and I slept in a real bed.

The next day I was on a plane to Las Vegas, Nevada to my brother's home.

What made this experience so noteworthy is because I was on 100 mg of prednisone. With that much prednisone in my system for over a month, I couldn't think or care for myself. I had been medavac'd so that I could be near nurses if I had a problem. Well it was a mistake.

There had been special provisions made for my kidney problems, but the nurses on the plane didn't have my food or provisions. The plane had a problem and we ended up going to England for repairs. Then we went to the U.S. An eighteen hour flight ended up being almost thirty hours. Once again there was no heater...

When the nurses found out that I had been rescued from their care, they told my husband that he could be in big trouble. He shot back with the information that I was a civilian and he was a retiree. And, because of my treatment he might take it up with the VA or other body... He didn't care which... and he was especially angry about the broken window.

By the way I could barely walk, but they wouldn't let me sleep during the day.

I did make it to my brother, who was astounded at the change in me. I was a walking skeleton. It was at this point that my family realized that I was sick. Really sick.

My husband came about a week later on a regular flight from Germany. In two days he had packed me up for my trip to Travis AFB. At this time I had had two IV transfusions of 1400 mg of cytoxan. I was taking 100 mg of prednisone a day. I was taking a multi-vitamin, high blood pressure medication, and taking shots for my red blood cells. Apparently the cytoxan was killing my RBC quickly. I was fatigued all the time and could barely walk or hold my head up. I was nauseous too.

My cognitive abilties had degraded rapidly. My husband said that I was as responsive as a turnip. I was not me. One thing he told me later is that he was so worried that I would die. When we reached the States, and I survived the treatment from the military nurses, he knew that I would survive.

I am too mean to die, yet.

(more to the story)

Continued: My Vasculitis Story

2009-05-05T08:05:00.000-07:00

I have tried to explain many times to friends and family how it felt to lose my ability to think. Being able to think through problems or even to write was such a vital part of my personality that when I lost it for a time, I felt like I lost myself. The only person who even understood what I tried to say has a hole in his brain from an accident that should have killed him twenty years ago. It is one of those things that if it hasn't happened to you, then you will never understand.

When I was put into the ambulance on my way to Homburg hospital, a small teaching hospital some distance from Ramstien, I didn't know what was ahead for me. I felt some relief that I was going somewhere to someone who would be able to rescue me from my symptoms. I wouldn't die.

I was carried into the hospital because by that time I couldn't walk or even lift my head. I looked up into the faces of a man and woman in white coats. They asked me in German to tell me how I came to this point. I told them of my eyes, my roving pain, then going to the opthalmalogist. I talked about an autoimmne disease. When I was finished, the man (who I found out was one of the head doctors and instructors) patted my shoulder.

He then said in English: "You can relax now. We will take care of you."

There was such relief. I had been holding my brain, my mind, my heart together. I knew they would find out what was wrong with me. They would not leave any stone unturned.

The next day the nurse who spoke a rudimentary English tried to take 20 vials of blood out of my arm. She couldn't get more than a drop from my arm. So at that point they scheduled me for a blood transfusion.

Because my brain and body was filling up with creatinine, (I was up to 8.8), I can't remember the actually timing of events. I know that they took me down into the lab so that they could put a tube in my neck into my carotid artery that went to my heart. It was used for my blood transfusion.

Also, they started me on a procedure called hemofrieze. I think that it is actually called hemo pharesis (or something like that). The patient is connected to a machine and her blood is circulated through several filters. The albumin is stripped out of the patient's blood and replaced with new albumin. This procedure saved my life. I had it done three times a week for two weeks. It is very cold unlike dialysis. I had one dialysis procedure (which is warm)... They didn't want my body to get used to dialysis because my kidneys might not heal enough to come back.

Additionally, they took a biopsy of my kidneys during the first couple of days. I laid on my front, while the doctor put a needle in my kidney. It pinched for a moment. They made me lie on a stone for 24 hours so that it would heal. I was sore and hurt for awhile afterwards.

It is amazing how a person can adapt to almost any situation. I began to use some of the German that I learned in school. I talked to other patients. There was an older man who was connected to the dialysis machine for 8 hours a day. I think now that he was at the end of his life.

Because of the creatinine levels in my blood, I was unable to think clearly. And then two weeks into the treatment, one of my doctors told my husband that he had good news. They could treat me and even save my life because I had a vasculitis disease.

"What's that?"... we had no idea. My husband looked it up when he got home from the hospital. But after looking up information on vasculitis and Wegener's Granulomatosis, he became grimmer than ever. In 2003 the information online was not hopeful.

That night they gave me my first infusion of cytoxan. The doctor who prepared me for the infusion explained that I might have some adverse reactions (nausea and possible vomitting) after taking the infusion. Fortunately for me, the first infusion was fine. I have to admit that I was in tears when I was told that the cytoxan would most probably make me infertile. Funny, I was 41 and had never thought that I wouldn't have a child eventually.

But it was necessary. I have learned to use those words. It was necessary. And it saved my life. I was able to get up and walk the next day. I began to show some life in me. I even showed interest in books and movies. I didn't read well because I was on 100 mg of prednisone. I still slept a lot. And because my kidneys were not stable yet, I started having high blood pressure. Even worse, I lost so much weight that I was a skeleton. I went from 180 pounds to 140 pounds. I didn't look good at all.

It was a personal triumph when they took out the tube in my neck. And when I was allowed to go home, I was so happy. But it wasn't over yet.. not by a long shot.

(story continued tomorrow)

My Vasculitis Story

2009-05-04T08:23:00.000-07:00

In November 2002 I lived in Rodenbach Germany, near the Ramstein AFB. My husband was a contractor for the military and provided electronic support for some of their network systems.

I had started a Master's degree course with Oklahoma University for Adult Education when I began to have problems with my eyes. Also I was having roving pain problems, especially in my kidneys and shoulders. The doctor dismissed my pain problems saying that it was probably arthritis, but he was more worried about my eyes. He thought I had conjunctivitis. He provided medication to put in my eyes, but after three days my eyes went from pink to a blood red.

After he looked at my eyes again, he decided that I needed to see an opthalmalogist. It took another month to see the opthalmalogist. So it was early December before I saw this specialist. After the opthalmalogist looked at my eyes, he decided that I could have problems with an autoimmune disease or that I might not clean my eyes well. Instead of sending me to a rheumatologist, he gave me 800 mg of ibuprofen to take three times a day. He went on vacation, while I tried the medication.

In a few days my eyes lost the inflammation (not red any more). But, within another week I began to have problems eating and drinking. For two weeks I was either having problems with vomitting or diarrhea. My husband began to take me to the Landstuhl ER. Unfortunately, the ER was mostly used to treating blunt trauma (for soldiers) or heart attacks (for retirees). In my case, they told my husband that I had mental problems and that I needed to see a psychiatrist.

I went back to my primary care physician who was appalled at the change in my condition. It had been fast and severe. I lost several pounds and couldn't eat anything. He said kidney infection and gave me an antibiotic. Then he scheduled me for a blood test in two days. All this was happening between Christmas and New Years Eve. I was lucky to find anyone at the hospital. And, I was confused and couldn't move. After taking the medication, my husband had to carry me to the bathroom because I couldn't walk. When I took a bath, he needed to take me out of the tub.

My husband took me to the hospital that day for my labs. He was getting worried. He couldn't understand why the doctors couldn't find out what was happening. And, I was going downhill very quickly.

After my labs, my husband almost carried me through several hallways to get to my doctor. As we turned the corner, he was running towards us with a wheelchair. They settled me in, and he told my husband that I was losing my kidneys. It took a few hours, but I was put in the I.C.U.

At the time I didn't know how sick I was... My husband knew at that time that he might lose me. Even the nurses were not hopeful of my condition. They tried flushing my kidneys, giving me prednisolone (through an I.V.), and calling other hospitals that dealt with kidney problems. Eventually, they found a hospital near Ramstien that dealt with rare kidney diseases. But I had to hang on one more night.

I was completely wired up with a heart monitor, cathetor, etc... Even the nurses weren't hopeful about my survival. In fact before I was sent to the other hospital (by ambulance) the head nurse walked into my room.

She told me that I didn't have long to live.

"I know," I answered her. And then she left. I knew that I had to hang on until we found some one, some doctor, who would be able to help me. I couldn't die in Germany. It would hurt my husband too much.

(story continued tomorrow)

VASCULITIS AWARENESS WEEK - May 3 - 9, 2009

2009-05-03T07:43:00.000-07:00

This is vasculitis awareness week in connection with other autoimmune diseases.

I will be refreshing my information on Wegener's Granulomatosis this week.

If you are interested in supporting the Vasculitis Foundation for supporting research for these diseases you can donate at the Vasculitis Foundation.

Did you know…. Most people with Vasculitis don’t even look sick?

2009-04-30T10:14:00.000-07:00

….There is no cure for Vasculitis; treatment is aimed at helping reduce symptoms.

….Vasculitis is an autoimmune disease where the body starts to attack itself?

….The ‘systemic’ forms or generalized types of Vasculitis may affect many organ
systems at the same time?

….Vasculitis affects people of all ages from children to older adults?

....It may take months to years to get a confirmed diagnosed of Vasculitis?

….The family of Vasculitis diseases are considered rare through out the world?

Support the Vasculitis Foundation

Vasculitis Awareness Week

May 3rd thru 9th 2009

Swine Flu and other thoughts

2009-04-29T08:10:00.000-07:00

Yesterday, I was standing in the post office behind a woman who was coughing in her fist and then touching the counters next to us. The counters follow the line all the way to the postal clerks.

Of course I was paranoid. Not only do I have to worry about this swine flu epidemic, but I also have to worry about my lowered auto-immune disease. A few months ago my doctor lowered my imuran because my white blood count was non existent. To you who don't understand this reference, white blood cells increase when there is infection or illness in the body. It kills and cleans out the infection.

In my case because I have an auto-immune disease, my medications lower my WBC so that I can live... It keeps my disease under control. However, when the WBC is too low, I am susceptible to infections and illnesses like flu. So I have to have a balance.

Interesting that when I use balance I also think of emotional balance. To keep well, I need to keep my life relatively stress-free. My disease can flare if I have been under prolonged stress. So now I know that stress and illness can go hand in hand. And in my case, it can be a killer.

So when I made it to the postal clerk, I mentioned that the woman (who looked like she was not too smart anyway) was coughing in her hand and touching the counters. She assured me that they would wash the counters with a disinfectant. I felt better. Even though I still had been exposed to this woman's germs, I knew that I would be okay.

However, I have stockpiled hand cleaner. I still wash my hands often. And, I am still pretty isolated except for my post office and grocery runs. So hopefully, I will get through this newest scariness scott-free. Maybe.

Added note: 11:30 a.m. There is one confirmed case of swine flu in Reno, Nevada. It is a two year old child, who has not traveled to Mexico and has spent most of her time in a day care center.

Serialized Novel is UP

2009-04-27T08:11:00.000-07:00

Yes, the first chapter (prologue) is up at Scrambled Sage . New chapters will be psoted Monday and Wednesday.

Check Out German Photos on Ebay

2009-04-25T12:43:00.000-07:00

Germany Volume One digital photos on sale at Ebay. My husband is the photographer and he has done a fine job with a CD Mavica digital camera.

The photos are in a Tiff format so they can be cut down to any size you need for your projects.

The picture on the left is an example of his work and is on the CD.

Photo is courtesy of Edward "Otto" Tune.

Serialized Novel Announcement

2009-04-24T09:42:00.001-07:00

Starting April 27th, 2009, I am going to put serialized chapters of my novel Shira online at my creative writing blogspot Scrambled Sage. When the novel has been completely put online, I will offer my readers the chance to get the whole novel in pdf form for a small price. At this time I am think about 1-2 dollars. Anyway, if you read my blog, you will get the whole novel online. :-)

I would love to hear from you ... (strengths, weaknesses, etc.) So here's the first announcement.