#52 - To Be Continued ... On Hold

Ah... lupus and traveling.

Feh.

My little travel log that I posted earlier this week actually takes a few hours to pull together.

Unfortunately, I am too sick again to write a in-depth entry.

This is what happens when you travel with lupus.

You have to take a vacation from the vacation.

I have pretty much been in bed, on the couch, or propped in a chair the past few days.

Not feeling so hot today either.

I pushed too hard and it is what it is.

Have a blessed weekend everyone!

#51 - Mabel Does Toronto

Oh yes she did!

What's a trip without Mabel the migraine monster packing her bag and slogging along for the ride?

Fortunately, I was able to medicate her into submission for most of our weekend in Toronto.

The trip was great, rejuvenating.

We got a great off season deal at the Delta Chelsea. (Toronto hotels, Downtown Toronto hotel accommodation, Delta Chelsea Hotel, Business Hotels)

Mabel, Hubby and I were ravenous from the long car trip so we had a bite to eat at our favorite pub. (Devil's Advocate , Toronto Business District Pub, Canadian, Dine.TO Toronto Bar / Club Guide).

Hubby went for his usual pub fare... the fish fry. I prefer to try something different from the menu each time we visit. I figure I might be making the chef happy by getting the opportunity to make something not frequently requested. I had delicious charbroiled chicken on skewers with very spicy peanut sauce. YUM!

The food and relaxation beat Mabel into submission, so we went shopping.

I got brave and decided to finally buy some concealing make-up to cover up the lupus scars and sores. Only in Toronto (as far as I know) can you find a qualified cosmetologist at the corner drug store!

She picked out Revlon New Complexion One Step. This make-up is SPF 15. It really worked well for coverup and did not make my skin worse. Unfortunately, I can not attest to animal testing if that is a concern for anyone.

This was the first time I have approached a cosmetologist since I became ill. I have become extremely sensitive about the marks lupus has been leaving on this body. Bad, vanity... bad! Bad!

The woman I talked with was so kind. She did not make me feel embarrassed nor did she make a fuss about the lupus thing. Yeah!

We went back to the hotel to rest up a bit and so I could play girly-girl with my new make-up.

We took a stroll up Younge, hit plenty of used book shops and went to the movies for the evening. Hubby needed some caffeine fortification for the evening and I picked up a triple threat chocolate brownie to sneak into the film. He buzzed on the coffee while I chomped on the sugar.

I love vacations!


I fell into a coma sleep as soon as we got back into the hotel... well, I waited until we got to our room... not too cool to plunk down asleep in the lobby.

(But, I thought about it...wink,wink.)

The weather turned big time to chilly rain by Saturday.

INDOORS!

We went to the Royal Ontario Museum. There is an exhibit of Korean art by Gim Gisan.
(Royal Ontario Museum Exhibitions & Galleries Current Exhibitions)

The visit was good, but a bit disappointing. The ROM is under major reconstruction right now, so the beautiful front facade is all covered up and some exhibits are in storage as galleries are being moved and renovated. The sketches of the new museum design are morenist hell... IMHO. Looks like they are planning on putting up some glassy pointy thing like the Louvre.

phooey.

The visit knocked me out. We stopped at a food court at College Park (College Park (Toronto) - Wikipedia, the free encyclopedia) for a quick bite to eat before going back to the hotel. Dominion food store has a fresh food mart in the food court. So you can purchase all kinds of fresh goodies that the store employees will prepare for you at the counter.

Our store clerk provided the best service... he was so happy and nice! The food was delicious, and his cheerfulness made for a great luncheon experience.

Back to coma sleep.... zzzzzzzzzzzzzzzzzzz. I was fading pretty fast for the remainder of the trip, but we tried to squeeze as much out of it as possible...lol!

After a few hours of sleep, we decided to catch another film.

The rain continued to rain and the chill continued to chill... so, of course that meant a late dinner of hot and spicy food! We stopped at a Nepalese restaurant for delicious chow. (:: KATHMANDU RESTAURANT - The Finest Indian and Nepalese Cuisine in Toronto ! ::). We split orders of chicken beriyani, samoya (spicy potato and peas in a dumpling) and butter bread. to be continued....

#50 - Mercury Dental Fillings Update

News on a recent study of children and mercury dental fillings was released April 18, 2006.

You can read a summary of the results here:

Studies find no harm in mercury dental fillings - Children's Health - MSNBC.com

If you just skim this article, you may believe that researchers have discovered that the amalgam fillings are not harmful.

And that is probably the conclusion that some folks would like you to believe.

But, READ CAREFULLY!!

This recent study is under heavy criticism and for good reason.

Who in their right minds does testing of mercury fillings on children?!!!

In human research this is considered unethical.

The parents of children participating in such a study must receive ALL information regarding the potential harmful side effects... current and FUTURE.

How could the researchers possibly know what harmful side effects may occur in the children's futures when experts can not agree on this?

In 1995 an extensive study was done in Germany of amalgam fillings. The study concluded that there was enough mercury in the saliva to be up to 100 times higher the the allowable recommendation by the World Health Organization (WHO).

Amalgam ban demanded in Germany

We do know that mercury causes the following physical symptoms:

Diagnose-Me: Condition: Mercury Toxicity (Amalgam Illness)

Be careful when you read studies.

Just because an "expert" or even a qualified researcher says so... doesn't necessarily make the results the whole undiluted truth.

The study in question fails to take into consideration the long-term effects of these mercury fillings.

Much, much more needs to be done before subjecting children to such nonsense.

If you are considering having your amalgam fillings removed...

PLEASE PROCEED WITH CAUTION!!!

Research also is showing that mercury levels may actually INCREASE from the removal of fillings.

Amalgam Dental Fillings - WA State Dept. of Health

You will find information regarding filling removal about 2/3's of the way down the page. You will also note that the information on this website conflicts with the information from the German study and the "Diagnose-Me" website.

#49 - Out of Town

Just a quick note to my online buddies...

Hubby and I will be in Toronto for the next few days...

this is a make-up for having to cancel our trip several weeks ago thanks to Ms. Lupus.

My e-mail box is overflowing...

my apologies to everyone.

I have blocked off a good chunk of next week to catch up.

Please all try to stay healthy.

Many prayers for so many of you tonight.

#48 - Looking for Readers

This is what happens to you when you are stuck in the house with lupus.

You get "cabin fever".

To break the monotony I have been keeping track over the past two months on where the readers are coming from.

Little Bear has been coin collecting and I have been looking up the states and regions while watching him enjoy his new hobby.

We are having a hoot!

Here are some states and American territories that I have not heard a peep from:

American Somoa
Arizona
Colorado
Conneticutt
Federal States of Micronesia
Guam
Hawaii
Iowa
Maine
Marshall Islands
Mississippi
Montana
Nevada
North Dakota
Nothern Mariana Islands
Oklahoma
Palau
Puerto Rico
South Carolina
South Dakota
Utah
Virgin Islands
West Virginia
Wyoming

And this is really cool...

Here are some of the nations that have checked in to Life with Lupus:

Portugal
Ireland
Germany
Canada
Russia
Italy
Phillippines
France
Hong Kong
Australia
United Kingdom
Japan
Turkey
Belgium
Malaysia
Venezuala
Mexico

Next time you think that you are alone with this lupus...

look at this list...

we have brothers and sisters all over the world struggling with the same challenges.


And...

if you would like to help us fill in our map list, please leave a comment or drop a line.

Thanks!

#47 - Miracles: Do They Exist?

I believe in miracles.

Just had to make that clear and get that out of the way so we can move on here with today's topic.

Is there anyone with a chronically debilitating disease who actually has NOT wished for a miracle?

Here is an interesting article written from the perspective of a skeptic:

BBC NEWS Magazine Modern miracles

I like what he shared in here because he addressed religious miracles that did not fall into the realm of cash flowing in exchange for the cure.

I don't know why some folks have a miraculous healing and others do not.

But, I do know this...

I have witnessed incredible suffering created by people who feel persecuted that if only they were mentally strong enough, or if they did something just perfect... that they would be healed.

I think of the likes of New Age author, Louise Hay.

She had a miraculous healing from cancer.

And I think that is great, but somewhere along the way... this has made her an "authority" on the "causes" of all sorts of ailments.

You know what she says about lupus?

That those of us with lupus lack the will to live.

You know... that is just ridiculous.

But, I know a lot of folks who buy into Hay's mode of beliefs. And that sure does cause a load of suffering for them when their body is going through a rough spell.

The same can be said for certain modes of Christianity. The attitude that you do not believe strongly enough... therefore, you are not worthy of that miracle.

You know... I doubt that this is what Jesus had in mind.

Call it a hunch.

Some of the oldest religions out there recognize the physical challenges of disease as a spiritual cleansing. That the burden of the physical ailment actually nurtures growth of the soul.

How about that?!

Some of the greatest spiritual leaders, teachers, saints... suffered physically big-time.

So, we the constantly ill... are we the unworthy opr the worthy?

I have absolutely no idea.

My attitude is that this lupus just happened.

That's it.

This is my life, this just happened.

Took me a few years emotionally to come to that conclusion.

But, if I was miraculously cured...

I sure would welcome that.

If you would like to... please share your miracle stories in the comments section or provide a link to your blog entry about this topic.

HAPPY EASTER, Folks!

#46 - On the Radio

I will be on the radio for the first time in a long time next week.

Igo into the studio tomorrow to record a listener commentary for our local NPR (National Public Radio) station.

Let's hope Ms. Lupus co-operates.

I will provide an audio link to the broadcast as soon as it becomes available.

#45- Lupus in the News - Hope for a Cure

There is a new treatment that recently has been made available to people with life threatening lupus.

This intervention does use stem cells, but here's the good news... the stem cells are retrieved from the patient's own bone marrow.

Read more here:

Stem cell therapy may treat lupus - Stem Cell Research - MSNBC.com

#44 - Embracing Gratitude While Coping with Lupus

Thank you to Dawn (Carpe Diem - Seize the Day) for providing the following link!


HSS - Embracing Gratitude While Coping With Lupus

#43 - Fun with ebay and Lupus Skin Problems

On very rare occasions I am willing to endorse a product.

I recently purchased several items from this ebay seller, BLACK BEAR TRADERS:

eBay Store - Black Bear Traders handmade soap natural lotion: Rough Gemstones Crystals, Stone and Mineral Specimans

I bought some soaps and oils.

I had asked the Seller about recommendations for something to heal my lips which have been horrendously sore for months now due to the lupus.

She tucked a free Healing Salve stick in with my purchases.

I tried the stuff, because I have truly run out of options... and the sores were gone in less than 24 hours.

Here is the link to the healing salve:

eBay: <*) (2) *HEAL ALL* Herbal Salve Stick *EARTHSONG* (item 9503916074 end time Apr-26-06 20:06:33 PDT)

One of the challenges with the lupus skin problems is that I am allergic to petroleum based products... which happen to be in practically any lip balm on the market.

I have used Chap Stick All Natural (ChapStick®) which was soothing, but no healing was happening.

Do you have any good lupus tips?

Add your suggestions in the comments section.

#42 - Lupus in Childhood

Here is a webpage for general information about childhood lupus:

Lupus in Childhood

#41 - Live Life to the Fullest

There was a memorial for Ellen on Sunday. Her theater pals and colleagues put together an art show and a celebration of Ellen's life. Everyone was encouraged to wear funky clothes, hats, and purses to honor Ellen's wonderful sense of fun.

I didn't go to the ceremony.

I was supposed to contribute her artwork from my personal collection to the exhibit, but somehow communications got screwed up and I did not know about the art exhibit or the memorial.

I found out the night before because someone in my family had read the newspaper and saw the news clip about the get together... which was open to the public.

I mean, that should have been invitation enough for me, but I had expected someone to call me.

Well, that's what I told myself.

So I cried and sulked all of Saturday night well into Sunday.

But, I think the phone call nonsense was trivial make believe on my part, because the reality was... I did not want to go.

I can speak of Ellen here in writing, but I could not fathom the public display of the tears that I knew would be flowing if I attended. I did not want to make a spectacle of myself, or make anyone else uncomfortable.

This was a celebration of Ellen's public life, and quite frankly, I had ceased to be a part of that life years ago when I quit theater and pursued my dream of living nice and happily cozy in a quiet family life. I tossed off the gypsy ways that Ellen and I shared.

That was sort of the end of part of the friendship we had. Theater is not just a career, it truly is a lifestyle.

The large portion of Ellen's life was no longer relevant to the daily life I have been leading, and the same held true for her perspective on how I was living.

She used to come out to the bars to watch me perform in the band, and I would spend my evenings off going to her shows and hanging out until the wee hours of the morning talking, talking, talking about the arts and the latest gossip.

Our friendship reignited almost four years ago when we ran into each other in a small Italian restaurant. That was a moment of Divine intervention.

We had agreed upon that almost instantly.

That restaurant was where we would scrape a few dollars together during our "hungry artist" years to buy a deliciously inexpensive plenty of leftovers tomorrow Italian feast.

I was there with my family to celebrate my Mother's birthday, Ellen was there with her guy for much more somber reasons.

She was going to have her first dose of chemotherapy the next morning. She wanted to enjoy a good meal before she started on that journey with cancer.

We bumped into each other within days after she was diagnosed with the ovarian cancer.

We had not communicated in eons. Ellen and I had only been bumping into each other once in a great while. I had been doing a few theater things before Little Bear came along, but once I became a mom, I didn't see Ellen anymore. Our lives had veered off in two different directions...

yet, there we were face to face in shock in the middle of a noisy restaurant.

I thought, oh God must have known Ellen would need me through this cancer battle.

Boy, was I wrong!

I needed Ellen.

I was diagnosed with lupus within a year after our friendship revived.

We still gabbered on and on about the arts, but now the weight of our discussions shifted mightily.

Life.

What is it?

Is this it?

What's next?

Any regrets?

Anything we would change and if so is it too late?

I can remember one car ride, we had been havig a quiet afternoon. We were at a red light and simultaneously the tears were flowing between the two of us.

"I have cancer," she said quietly. "I HAVE CANCER, DAMMIT! IT'S NOT FAIR!"

"I know. I love you."... I mean what else is there to say?

We went to the public library, sat together pouring over books and went for a sip of tea.

That is the turn it took with our conversations.

Loads of quiet, sometimes a long burst of what was dancing through our hearts, sometimes a lot of residual bickering from years of accumulated nonsense... and then a mutal agreement that life is too short to be petty... and then we would be goofy and call it a day.

I had always felt that I was Ellen's best friend.

"I have a lot of friends, you know."

"I know, Ellen, but you will always, be my best friend."

That is the thing with her... she had that gift.

Charisma.

Makes for interesting people and great theater.

A few weeks ago I won a candle contest.

Out of nowhere. I mean absolutely nowhere.

I had been thinking of Ellen doing her prosperity meditation for 40 days.

At the end of this meditation cycle, she won a beautiful coat from Lucky magazine. It was a great coat, but better still was the thrill of Ellen discovering that her prayers were being heard. I mean she wasn't chanting for a coat... she was just praying for a blessing any blessing onto her life.

But, a coat... well, a coat meant a lot to that gal. Ellen was as tiny as a little bird. She used to walk around in a huge baggy sweater (looked like a guy's garment) and say she was wearing "my man". For all I new, it was her boyfriend's shirt.

But, being draped in a warm comfy garment made Ellen happy, so that coat made her really happy. She would meet up with me and there she would be bouncing around in her brand new prosperity coat.

Yes, prayers are heard.

I was missing her desperately one night, I asked God to allow her to give me a sign, any sign to please please assure me that she knows how much I have loved her.

And I thought what a goofball afterwards. Shame on me for such a prayer.

Shortly after, I get an e-mail telling me I have won this huge prize from a candle website.

I won about fifty dollars worth of candles!

The packages started flowing in.

I danced around for joy with each delievery, but I had forgotten that plea to the heavens.

And then the final candle arrived.

It was a huge purple soy candle that smeeled of cookies. Handmade, scrumptious and the perfect gift for me. I love candles so much. I love the light they bring, the warmth they generate, and the delightful scents that make the home cozy.

Later that night I read the label on the candle.

You know what it said?

BEST FRIENDS.

The color?

Purple.

That was always my color since we were girls. Ellen was yellow and I was purple. Ellen would always toss a little purple into the things she made me because she knew I loved that color so much.

The scent?

Cookies.

The last thing I ever gave Ellen was a huge homemade cookie. We always had to have a cookie when we were together. I gave her one at Hospicee even though she couldn't eat it. She was actually lucid for a moment. I handed her the cookie, and she said, "Oh! A cookie! I had almost forgotten about that!"

She died the next day.

I know that God opened a little window in Heaven... I just know that this candle was no coincidence... it was a little gift from the heart from one pal to another.

So... no. I was not at the memorial.

I heard it was absolutely beautiful.

And tears were shed there... and I am glad for that. Yes, we should celebrate the life of a lossed loved one... but, I think Ellen would be disappointed if folks didn't shed a few tears.

This is my memorial... today.

I woke up this morning and decided the saddest part of the grieving is done.

Ellen, my memorial for you is this.

I promise to live life to the fullest, because that is what you have taught me to do.

You never missed a chance for a quick laugh, or a dash of goofiness to brighten up the day. You had your own style, you walked to your own beat, and you danced to your own music.

And that meeting at Tina's restaurant was the wake up call that life is too precious to surrender to despair.

So, sweety, this one's for you.

I am going to live life to the fullest.

I am going to write, write, write like you told me to.

I am going to publish like you asked me to.

I am going to sing until I pop.

I am going to make music even if no one is listening.

I am going to play like a kid again.

And I thank you.

The candle is really cool.

How DID you do that?

Love,

Lori