#28 - Olympian Figure Skater Has Vasculitis

Lovely Russian figure skater, Irina Slutskaya, has been coping with vasculitis .

Ms. Slutskaya started with a case of pneumonia in the summer of 2003, which went on to becoming bronchial asthma. This progressed to pericarditis (inflamation of the sac lining of the heart). Now the disease has progressed to vasculitis.

The origins of vasculitis remains unknown. According to the Lupus Foundation of America, vasculitis is associated with:


systemic lupus erythematosus
rheumatoid arthritis
polymyalgia rheumatica
scleroderma
Wegener's granulomatosis
temporal arteritis
cryoglobulinemia
erythema nodosum
tumors
leukemia
lymphoma

(http://www.lupus.org/education/brochures/vasculitis.html#1)

Although uncommon, vasculitis can occur on its own.


Ms. Slutskaya was told by her physicians that she should take time off. She declined stating that she felt "empty" when she did not skate.

She suffers with frequent pain and swelling in her legs and chronic fatigue.

This has cut into her training time and as reported by NBC.com has caused some fatigue near the ending of her performances.

I watched her short program last night and she was absolutely radiant.

BRAVO! to her for following her bliss. She is beauty in motion.

I remember watching her in the 2002 Salt Lake City Olympics and took an immediate liking to her.

She commented last night that since 2002 she has learned that life does not end with figure skating.

She has been tending to her ailing mother. Her mom has kidney disease, had a kidney transplant, but now is requiring a new transplant. Ms. Slutskaya has been taking her mother to the thrice weekly dialysis appointments.

I am all for Team USA winning Olympic medals, but this year, I have my eyes set on seeing Irina Slutskaya winning the gold.

:)

RESOURCES:

NBC Olympic News: http://www.nbcolympics.com/figureskating/5074660/detail.html

Lupus and Vasculitis:
http://www.lupus.org/education/brochures/vasculitis.html#1

Biography and Fan Site:
http://www.irina-slutskaya.com/biography.htm

#27 - Howie D of the Backstreet Boys - Lupus Advocate

Howie D. (Dorough) of the Backstreet Boys lost his beloved sister, Caroline, to lupus in 1998.

You can read Howard's personal testimony about this experience here:

http://www.doroughlupusfoundation.org/CelebSpokesMessage.html

Howard and his family decided to help others with lupus by funding research through the Dorough Lupus Foundation:

http://www.doroughlupusfoundation.org/press.html

Much thanks to the Dorough family and all of our unsung heroes who step up everyday to help us fight the good fight against lupus.

PICTURE CREDITS: http://www.doroughlupusfoundation.org/CelebSpokesMessage.html

#26 - America's Next Top Model - Lupus Advocate

You know that I am not doing so good with the whole "lupus thing" when the depth of my writing is about television.

So it goes.

I have been battling big time with fatigue and a migraine cluster from h-e- double hockey sticks. I get one, sometimes two hours out of a 24 hour day in which I can function reasonably well.

That's it.

I would go hide under the bedcovers if lying my head down on a pillow didn't hurt so bad.

So I watch television, because when it is this bad... I don't write very well, I can't read... forget about sewing... well... I am just not a fun gal to be hanging with.

But, in spite of the "woe is me" complex... I saw something of import on television this evening that is worth reporting in the world of lupus.

Season two of Tyra Banks America's Next Top Model was having a run today on VH-1.

Season 2 features a drop dead gorgeous young lady named Mercedes... who ahppens to have lupus. In the episode I saw, she was stating that her hair was starting to fall out because of her lupus medications.

No small wonder considering that the girls are coached and drilled for 10 weeks (if they that last that long) in preparation for a finale runway show for the two best contenders.

Mercedes happens to have been one of the top two.

In speaking about her lupus during the time of the taping of that episode, she reported that she didn't tell people that she has lupus.

I don't blame her one bit.

She said she didn't feel like dealing with people asking her "How are you doing?" all the time.

I praise her for changing her mind, though, in being more forthcoming about her personal encounter with lupus.

She is now a spokesperson for World Lupus Day for the Lupus Foundation of America:

http://www.lupus.org/news/spokesperson.html

Good for her!!

If we all keep quiet and slink away to a quiet corner when the disease overtakes us... we will lose the battle against lupus for generations to come. People do not think about diseases like lupus unless someone is drawing attention to the reality of this disease.

I am not saying that everybody must speak up about lupus, but someone like Mercedes who is very much in the puiblic eye can do great good by adding her voice and image.

So Bravo to Mercedes... you are MY America's Next Top Model!

PICTURE CREDIT: http://www.lupus.org/news/spokesperson.html

#25 - Hip Hop Producer, J Dilla Update

Hip Hop producer, J Dilla (also known as Jay D) was put to rest yesterday (Valentine's Day).

He was diagnosed with systemic lupus about three years ago and had developed serious kidney complications.

All Hip Hop online news does an excellent job in explaining lupus and honoring J Dilla's work:

http://www.allhiphop.com/hiphopnews/?ID=5357

My heart goes out to J Dilla's mother, his family and his friends.

He was only 32.

He has an album that is due to be released this week.

Lupus is an equal opportunity disease.

It has no respsect for talent, age, or social status. It attacks women and men: mothers, daughters, fathers, and sons. It strikes down people of all races, but research is showing that it is more 2 to 3 times more prevalent in African-Americans, Hispanics, Asians and Native Americans.

Reading about J Dilla's early demise is a wake up call to just how serious this disease can be.

Learn more about lupus and consider donating to research here:

http://www.lupus.org/

#24 - Hip Hop Producer Dies of Systemic Lupus

James Yancey, age 32, also known as Jay Dee and Jay Dilla died today of systemic lupus.

Rolling Stone reported him as one of the top 10 producers of soulful hiphop music.

Read more here:

http://news.bbc.co.uk/1/hi/entertainment/4706602.stm

#23 - Author, Peter Benchley, dies of Idiopathic Pulmonary Fibrosis

The writer of JAWS, passed on today at the age of 65.

Peter Benchley's widow has reported that he died of idiopathic pulmonary fibrosis.

This disease can be caused by pollutants, but it is also associated with autoimmune diseases such as lupus, rheumatoid arthritis, and scleroderma.

I am sorry about his passing. His book gave plenty of folks a summer thriller that is unforgettable.

To learn more about idiopathic pulmonary fibrosis please check out this site:

http://www.pulmonaryfibrosis.org/ipf.htm

#22 - Understanding Blood Tests

Oh, those pesky lab results!!

What is a WBC?

What's the scoop on CBC's?

If you are driven to ask questions such as these, you probably deal with autoimmune disease.

Here's the scoop:

http://tjsamson.client.web-health.com/web-health/topics/GeneralHealth/generalhealthsub/generalhealth/cardiovascular/blood/blood%20tests_count.html

Read up! Take notes!

Who knows?

Maybe there is a pop quiz in your future?

;)

Sister Loretta Mary Holy Card Water Tiger

#21 - Chronic Fatigue

Chronic Fatigue Syndrome is a sister to lupus... in my humble opinion.


Symptoms of Chronic Fatigue Syndrome include:

*muscle pain and/or twitching

*joint pain but without swelling or tenderness

*on-going flu-like feelings

*headaches which may be migrainous in character

*problems with balance

*unrefreshing sleep pattern

*sore throats

*enlarged glands

*intolerance of temperatures extremes

*alcohol intolerance

*postural hypotension (low blood pressure)

*sensitivity to bright light and loud noise

Read more here:

http://news.bbc.co.uk/1/hi/health/medical_notes/1002458.stm

Thanks for the Comments!

This was formerly the Welcome page.

I did not want to delete this entry because there are some great comments.

Take a peek.

:)

#20 - Send Michael Moore Your Health Care Horror Stories

Activist and filmmaker, Michael Moore, is looking for people who would be willing to be interviewed for his next film about HMO's.

You can read about this film project here:

http://www.michaelmoore.com/words/message/index.php?id=193

#19 - Day #8 of Mabel the Migraine Monster

I am on day #8 of Mabel the Migraine Monster .

You can read about Mabel in my Life with Lupus Archives here:(http://journals.aol.com/lrttklly/LupusLeftovers/entries/202)

Mabel is a cluster migraine that is associated with active lupus.

I think she hangs around too much.

She is being so naughty that my vision is blurring and I have a terrible time expressing my thoughts verbally. But, for some amazing reason, I can write fluently. THANK YOU GOD!

The migraine pain is crazy making.

I had to see my PCP (Primary Care Physician) on Saturday morning. Wanted to just do a quick physical and make sure we were on base with the cornucopia of medications that I am prescribed.

Good idea to have someone on my medical team keeping an eye on me.

I was feeling defensive about having to go.

I am still often in "pre-lupus" mode when I visit physicians. Before lupus, my symptoms were dismissed. I was not really listened to and certainly was not taken seriously.

It took a skin biopsy and a cluster of observable symptoms over the course of a looong time to confirm that I am not a hypochondriac and that the physical suffering is very real.

So I went in feeling the old pre-lupus chip on my shoulder, and instead was treated respectfully... but, I got "The Look".

Ellen and I often referred to "the look" as she battled against the ovarian cancer.

Medical people take you very seriously now. And they get that gently kind look on their face. It's scarier than not being believed. Because "the look" means "I know you are really, really sick and unfortunately I am very limited in what I can do for you."

So I got "the look" on Saturday and a quick refill prescription for the migraine/pain medication.

I also got an updated tetanus shot.

The lab person who gave me the injection gave me the lecture on how my arm was really, really going to hurt for the next few days.

I had to laugh about that.

It aches a little, but good grief, what I wouldn't give to only live with a little achy bump like that everyday for the rest of my life.

A tetanus shot doesn't hurt when you have chronic pain.

It is nothing.

This migraine, on the other hand is one of my stumbling blocks.

When I hurt this bad, I am weak and shaky from the non-stop pain. I get sick to my stomach a lot.

When the medications kick in... the pain does not stop... the medications turn it into background noise. It is still there, but I am sedated so it does not bother me as much.

And I hate feeling like that, because I have to lie down (or fall down), and I am dopey. I don't feel like very good company. I get disorganized and I have trouble speaking. Conversations are exhausting.

This is magnified this week as I try to arrange for Little Bear's first big "Kids' Birthday Party Bash". We are renting bowling lanes and going all out this year for him. This is what he really wanted, and I have to do all the phone calling and such.

So I was on the phone a lot today and am now a drooling idiot in a world of hurt.

Hubby is bringing dinner home, none of the chores are done here, and I feel about ready for bed right now.

Whoopee.

I need Mabel to go take a vacation in Iceland or something.

You can learn more about lupus headaches here:
http://www.lupusmn.org/Education/Articles/HeadachesandSystemicLupus.htm

#18 - Stem Cells from adult: New Treatment for Severe Lupus

Thanks to Karyl (http://journals.aol.com/klconard1/GlimpsesofEternity/)
for the heads up on the results of a new study that uses stem cells harvested from the patient's bone marrow in order to treat severe cases of systemic lupus.

Read the details here:

Associated Press:

http://news.aol.com/topnews/articles?id=n20060131160109990008

And here:

Journal of the American Medical Association (JAMA):

http://jama.ama-assn.org/cgi/content/short/295/5/527