SharingOurDays.com

Last SharingOurDays Post

2007-04-08T16:27:00.000-07:00

Hi Y'all!

As many have guessed, SharingOurDays is taking a possibly permanent sabatical. My time with SharingOurDays was important and rewarding, but other time commitments have pushed it off my to-do list.

Thank you so much to everyone in the community who have shared so much and added to the lives of so many. My positive thoughts and prayers go out to you all.

- sean

Sean Spence
MS Advocate

SharingOurDays HealthBlog Headlines -- 3-13-07

2007-03-13T06:52:00.000-07:00

Just Worth Reading
"Reunion Opportunity"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"I am Voting for the One Night Stand..."
My Year of Healing (Breast Cancer)
http://mbupdate.blogspot.com/

"Happiness is Two Big Dogs and Miles of Beach"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

"Self-Portrait Challenge -- Online Tools"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

"Positive for Lyme!"
Erik's Multiple Sclerosis Blog (Multiple Sclerosis)
http://blog.thesmithlife.com/

"This Will Be Short"
My MS Journal (Multiple Sclerosis)
http://mymsjournal.blogspot.com/

Research
"A Sweet Promise from Sweet Wormwood"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

Surgery
"To Sleep, Perchance to Dream"
To Keep You, A Breast (Breast Cancer)
http://melnorth.blogspot.com/index.html

Treatment
"Little Does the Tumor Know"
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"Chemo Begins Today"
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

"Survivor's Guide to VNS: Part 10 -- Effective Settings"
Living with Epilepsy (Epilepsy)
http://scott-lwe.blogspot.com/

SharingOurDays HealthBlog Headlines -- 3-12-07

2007-03-12T07:54:00.000-07:00

Advocacy
"Update on Back to Columbia... WSHIP Lite: A Bad Idea"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

Just Worth Reading
"A Dying Person's Gift of Love"
Dying Man's Daily Journal (Bain Tumors)
http://hudds53.wordpress.com/

"Booby Prize"
To Keep You, A Breast (Breast Cancer)
http://melnorth.blogspot.com/index.html

"Again with the Damn Hair"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

"Good and Bad News"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

"A Very Important Day"
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"Thank You and Coming Home"
My Cancer Trek (Cancer)
http://mycancertrek.com/

"Life Goes On"
Leafing (Caretakers)
http://leafing2.blogspot.com/index.html

"Seeing the Sights of New York City"
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

"I See You"
A Life Less Convenient (Lupus)
http://www.alifelessconvenient.com/

"Cooking Cabbage"
Libbi's MS Journey (Multiple Sclerosis)
http://themonsterstory.blogspot.com/index.html

Treatment
"Wigged Out! Chapter 30"
traci-jerseygirl (Breast Cancer)
http://traci-jerseygirl.blogspot.com/

"Drugs that Heal, Drugs that Harm"
A Pastor's Cancer Diary (Cancer)
http://cewilton.blogspot.com/index.html

SharingOurDays HealthBlog Headlines -- 3-10-07

2007-03-10T06:43:00.000-08:00

Good News
"All Clear -- Sort Of"
A Pastor's Cancer Diary (Cancer)
http://cewilton.blogspot.com/index.html

"Day 26"
Another Dose!! (Hodgkin's Lymphoma)
http://jeffhartnett.blogspot.com/

Just Worth Reading
"Back to Feeling Lucky"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"Unacceptable"
Biography of Breast Cancer (Breast Cancer)
http://biographyofbreastcancer.blogspot.com/

"You Got the Right One, Baby!"
To Keep You, A Breast (Breast Cancer)
http://melnorth.blogspot.com/index.html

"Chemo Angels: Chapter 29"
traci-jerseygirl (Breast Cancer)
http://traci-jerseygirl.blogspot.com/

"She's Full of It!"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

"Dana Reeve 1961-2006"
Laurianne's Hope (Lung Cancer)
http://lauriannes-hope.blogspot.com/index.html

"That Day"
A Life Less Convenient (Lupus)
http://www.alifelessconvenient.com/

Treatment
"Breast Cancer and Fat Old Men"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

SharingOurDays HealthBlog Headlines -- 3-9-07

2007-03-09T06:08:00.000-08:00

Blogging
"Blogging is Hard Work"
Living with Epilepsy (Epilepsy)
http://scott-lwe.blogspot.com/

Good News
"All Quiet on the Western Front"
To Keep You, A Breast (Breast Cancer)
http://melnorth.blogspot.com/index.html

"Good News... At Long Last"
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

Just Worth Reading
"Blogging Family"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"Commando Dancing"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

"Day 143 -- I Don't Want to Die"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

"I Didn't Know I was Worried..."
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"This is Where I Live Now"
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"Bug Life/Niets is Zeker"
NotPerfectAtAll (HIV/AIDS)
http://notperfectatall.blogspot.com/

Treatment
"Emergency Room!"
My Cancer Trek (Cancer)
http://mycancertrek.com/

SharingOurDays HealthBlog Headlines -- 3-8-07

2007-03-08T06:58:00.000-08:00

Advocacy
"March 5th-9th -- National MS Week"
Object of My Injection (Multiple Sclerosis)
http://objectofmyinjection.blogspot.com/

Healthcare Bureaucracy
"To: Albert B. Einstein, M.D., Executive Director, Sweedish Cancer Institute"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

Just Worth Reading
"My Latest Breast Cancer Heroes"
Breast Cancer Victory (Breast Cancer)
http://www.breastcancervictory.com/

"Photographing Beauty Despite Cancer"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

Made Me Think
"There's No Age When It's Not Unfair"
NPR: My Cancer
http://www.npr.org/templates/story/story.php?storyId=5497708

Non-Profit Work
"Sims Family ALS Research Fund"
Never Give Up (Lou Gehrig's Disease)
http://billsims.spaces.live.com/

Treatment
"Decisions, Decisions"
To Keep You, A Breast (Breast Cancer)
http://melnorth.blogspot.com/index.html

"In the Chemo Room"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"Recovery"
My Cancer Trek (Cancer)
http://mycancertrek.com/

2007-03-07T03:11:00.000-08:00

Good News
"So Far, So Good -- No Sign of Cancer Spread"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

Just Worth Reading
"It Was a Beautiful Day: Chapter 28"
traci-jerseygirl (breast cancer)
http://traci-jerseygirl.blogspot.com/

"Cancer: The Cliffs Notes"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

"Day 141 -- Unforgiveness is an Enemy"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

"Advice for the Doctors"
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"You Gotta Laugh" (Several Entries)
My Cancer Trek (Cancer)
http://mycancertrek.com/

"Living Large"
Nightmare Hall (HIV/AIDS)
http://nightmarehall.blogspot.com/

"Self Portrait Challenge -- Online Tools"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

Treatment
"I'm Not a Doctor, But I Play One on TV"
To Keep You, A Breast (Breast Cancer)
http://melnorth.blogspot.com/index.html

"Support Groups"
Appendix Cancer Survivor's Blog (Cancer)
http://appendix-cancer.blogspot.com/index.html

"Weak for a Week"
Richard French (Cancer)
http://rdfrench.spaces.live.com/

SharingOurDays HealthBlog Headlines -- 3-6-07

2007-03-06T05:41:00.000-08:00

***Shameless Self/Blog Promotion***
"27 Days and Counting -- 1500 Miles for Multiple Sclerosis"
Missouri to Manhattan (Multiple Sclerosis)
http://www.missouritomanhattan.com/

Insurance
"Gang Member"
A Pastor's Cancer Diary (Cancer)
http://cewilton.blogspot.com/index.html

Just Worth Reading
"Angels"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"An Early Frontrunner"
To Keep You, A Breast (Breast Cancer)
http://melnorth.blogspot.com/index.html

"The Monday Fuzz Report"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

"Of Boobs and Breasts, Real and Silicone"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

"Dealing with Uncertainty and Loneliness"
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"So Very Tired"
Ellie Skees -- Age 8 (Cancer)
http://ellieskees.blogspot.com/

"Gopal Metro"
Shawn's HIV Blog (HIV/AIDS)
http://blogs.poz.com/shawn/

"One Deep Breast -- 'Mud Haiku/fib'"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

Treatment
"Chest X-Rays and Breast Cancer"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

"Day 22"
Another Dose (Hodgkin's Lymphoma)
http://jeffhartnett.blogspot.com/

SharingOurDays HealthBlog Headlines -- 3-5-07

2007-03-05T05:50:00.000-08:00

Well, I had completely finished today's listing and my computer crashed when I hit "publish." Ugh. Here we go again...

***New to SharingOurDays***
"After the Tears"
To Keep You, A Breast (Breast Cancer)
http://melnorth.blogspot.com/index.html

***Shameless Self/Blog Promotion***
"29 Days and Counting -- 1500 Miles for Multiple Sclerosis"
Missouri to Manhattan (Multiple Sclerosis)
http://www.missouritomanhattan.com/

Just Worth Reading
"Will I be Someone Who Used to Have Cancer?"
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"Japanese Household"
My Cancer Trek (Cancer)
http://mycancertrek.com/

"Progression"
A Life Less Convenient (Lupus)
http://www.alifelessconvenient.com/

"Winter Bike Race Report: 2nd Place!!"
Surviving MS in Alaska (Multiple Sclerosis)
http://icensnow.blogspot.com/

"'Stay Tuned'"
MozartMovement (Parkinson's Disease)
http://mozartmovement.blogspot.com/

Treatment
"Appetite"
Leafing (Caretakers)
http://leafing2.blogspot.com/index.html

Remembering a member of our community

2007-03-04T05:44:00.000-08:00

Hey Y'all!

In the post following this one, you will find the daily HealthBlog Headline Listing.

This week, we who follow SharingOurDays had the first passing of one in our community. We know him simply as “Dad” – one of three main players in the caretaker blog “Leafing” (http://leafing2.blogspot.com/index.html).

Oddly, I’m sure he did not know that I would consider him a member of our community. But many of us read about him and his battle with Alzheimer’s nearly every day.

Learning of his passing was difficult for me and I have not yet figured out if there is anything SharingOurDays can do to offer special recognition to those who leave us. As I write this, there are at least two more of our group who will not likely be with us much longer (for obvious reasons, we won’t name them).

For now, though, I encourage you to visit “Leafing” and offer your positive thoughts and prayers to Dad’s family. He had a long, mostly good life. His daughter, Carrie, does an excellent job of commemorating that life.

Take care.

Sean Spence
Founder, SharingOurDays
http://www.sharingourdays.com/
http://www.missouritomanhattan.com/
seanspence@earthlink.net

SharingOurDays HealthBlog Headlines -- 3-4-07

2007-03-04T04:57:00.000-08:00

Healthcare Advocacy
"Advocacy Video"
My MS Journal (Multiple Sclerosis)
http://mymsjournal.blogspot.com/

Insurance
"Treastment Without Insurance"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

Just Worth Reading
"Your Share of Happiness"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"It's My Birthday -- and I have a Gypsy in my Garage!"
Cheeky Librarian (Cancer)
http://cheekylibrarian.blogspot.com/

"Appetite"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"Just Thought You Should Know..."
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

"Weak Arm"
Surviving Multiple Sclerosis in Alaska (Multiple Sclerosis)
http://icensnow.blogspot.com/

Not Enough Time Left
"Day 138 -- Age Old Dilemma"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

Treatment
"Medication Sheets at Epilepsy.com"
Living with Epilepsy (Epilepsy)
http://scott-lwe.blogspot.com/

Work Challenges
"Quick Update"
The Multiple Sclerosis Companion (Multiple Sclerosis)
http://mscompanion.blogspot.com/

SharingOurDays HealthBlog Headlines -- 3-3-07

2007-03-03T06:17:00.000-08:00

Healthcare Advocacy
"Back to Olympia"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

Journaling/Blogging
"The Write Way to Heal"
A Pastor's Cancer Diary (Cancer)
http://cewilton.blogspot.com/index.html

Just Worth Reading
"Alive, Well and Not Too Traumatized..."
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

"Friday Favorites"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

"Look Good, Feel Better"
Laurianne's Hope (Lung Cancer)
http://lauriannes-hope.blogspot.com/index.html

"Returned"
A Life Less Convenient (Lupus)
http://www.alifelessconvenient.com/

"Feeling Sorry for Myself Today"
Libbi's MS Journal (Multiple Sclerosis)
http://themonsterstory.blogspot.com/index.html

Made Me Think
"Courage"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

Particularly Needs Positive Thoughts/Prayer
"Day 138 -- It's a New Battle"
Diary of My Battle With Cancer (Cancer)
http://donnewitt.blogspot.com/

SharingOurDays HealthBlog Headlines -- 3-2-07

2007-03-02T05:24:00.000-08:00

Just Worth Reading
"Doors"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"I Am Going to Pluto!!"
Cheeky Librarian (Cancer)
http://cheekylibrarian.blogspot.com/

"A New Month On the Calendar"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"The Next Step"
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"Some Men by Terrence McNally"
Living in the Bonus Round (HIV/AIDS)
http://bonusroundblog.blogspot.com/

"Bob Woodruff's Return to ABC"
Never Give Up (Lou Gehrig's Disease)
http://billsims.spaces.live.com/

Passing
"My Thanks to All and an Update"
Leafing (Caretakers)
http://leafing2.blogspot.com/index.html

Political
"Don't Read this if You are Easily Disturbed!"
Tim's HIV Blog (HIV/AIDS)
http://blogs.poz.com/tim/

Tough News
"Day 138 -- I Refuse to Accept the Death Sentence"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

Treatment
"A New Tension Tamer"
My Year of Healing (Breast Cancer)
http://mbupdate.blogspot.com/

SharingOurDays HealthBlog Headlines -- 3-1-07

2007-03-01T04:30:00.000-08:00

I apologize for the two-day intermission from the HealthBlog Headlines. I run elections for a living and Tuesday was Election Day, which threw me off. We are back on track, now. Take care.

- sean

Good News
"Good News and Other Uncharted Territory"
NPR -- My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

Healthcare Politics
"Hospital News"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

Just Worth Reading
"Big Prize Continued"
Dying Man's Daily Journal (Brain Tumor)
http://hudds53.wordpress.com/

"My Dirty Mouth is Famous!"
Biography of Breast Cancer (Breast Cancer)
http://biographyofbreastcancer.blogspot.com/

"Gentlemen Prefer Cancer Patients"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

"A Mixed Day on the Front Line"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

"An Elephant in the Fridge"
NotPerfectAtAll (HIV/AIDS)
http://notperfectatall.blogspot.com/

"Little Miss Snowfall"
Shawn's HIV Blog (HIV/AIDS)
http://blogs.poz.com/shawn/

"Answer: An Unusual but Limited Collection..."
A Life Less Convenient (Lupus)
http://www.alifelessconvenient.com/

"The Goldfinches are Back in Portland"
Libbi's MS Journey (Multiple Sclerosis)
http://themonsterstory.blogspot.com/index.html

"MidWinter Blahs"
The Multiple Sclerosis Companion (Multiple Sclerosis)
http://mscompanion.blogspot.com/

"I Want to Go Home Now"
Day by Day with Parkinson's & Peripheral Neuropathy (Parkinson's)
http://peripheralneuropathy.blogspot.com/index.html

Made Me Think
"From the Ashes"
Appendix Cancer Survivor's Blog (Cancer)
http://appendix-cancer.blogspot.com/index.html

"Create a Connection -- Challenge to Stretch"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

Passing
"Dad -- 1930-2007"
Leafing (Caretakers)
http://leafing2.blogspot.com/index.html

Poetry
"Guilt by Paula Apodaca"
Living with Epilepsy (Epilepsy)
http://scott-lwe.blogspot.com/

Religion -- Christian
"The Outreach Program"
The Pink Factor (Cancer)
http://thepinkfactor.blogspot.com/

Support
"Trouble Enough"
A Pastor's Cancer Diary (Cancer)
http://cewilton.blogspot.com/index.html

Treatment
"The 'New Norman' and our Desire for Better Treatment"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

"Do I Need Patience or a Thyroid 'Vitamin'?"
My Year of Healing (Breast Cancer)
http://mbupdate.blogspot.com/

"Off Chemo for Now"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"Packing Up"
My Cancer Trek (Cancer)
http://mycancertrek.com/

"New York City, Here We Come!"
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

"Day 17"
Another Dose (Hodgkin's Lymphoma)
http://jeffhartnett.blogspot.com/

"Lyme Test Results are Back"
Erik's Multiple Sclerosis Blog (Multiple Sclerosis)
http://blog.thesmithlife.com/

SharingOurDays HealthBlog Headlines -- 2-26-07

2007-02-26T04:40:00.000-08:00

End of Chemo
"Drugs, Fuzziness & Tattoos"
Breast Cancer Victory (Breast Cancer"
http://www.breastcancervictory.com/

Just Worth Reading
"Keeping Contact"
Dying Man's Daily Journal (Brain Tumor)
http://hudds53.wordpress.com/

"Erma Bombeck was Right"
Cheeky Librarian (Cancer)
http://cheekylibrarian.blogspot.com/

"It's Nice to Be Home"
NPR -- My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"Update"
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

"But Wait, There's Still More!"
Nightmare Hall (HIV/AIDS)
http://nightmarehall.blogspot.com/

"Bored"
Surviving MS in Alaska (Multiple Sclerosis)
http://icensnow.blogspot.com/

Political
"Sunday Scribbling -- Puzzled"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

Science
"Six Cell Rules Broken by Cancer"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

Treatment
"Transplant"
Another Dose (Hodgkin's Lymphoma)
http://jeffhartnett.blogspot.com/

"Alive Hospice"
Never Give Up (Lou Gehrig's Disease)
http://billsims.spaces.live.com/

SharingOurDays HealthBlog Headlines -- 2-24-07

2007-02-25T04:18:00.000-08:00

**New To SharingOurDays**
My Cancer Trek (Cancer)
http://mycancertrek.com/

Just Worth Reading
"Day 133 -- It's Time to Rise Up"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

Made Me Think
"Inspired"
NotPerfectAtAll (HIV/AIDS)
http://notperfectatall.blogspot.com/

Treatment
"CT Scans"
Appendix Cancer Survivor's Blog (Cancer)
http://appendix-cancer.blogspot.com/index.html

"Herceptin in the United Kingdom"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

SharingOurDays HealthBlog Headlines -- 2-24-07

2007-02-24T05:37:00.000-08:00

Funny/Inspiring
"Ridiculous, Party of One -- Your Table's Ready"
Biography of Breast Cancer (Breast Cancer)
http://biographyofbreastcancer.blogspot.com/

Just Worth Reading
"A Good Week"
Leafing (Caretakers)
http://leafing2.blogspot.com/index.html

"Getting to Know You"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

Good News
"Good News on the Chemo Front"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

Religious/Christian
"Have a Little Faith"
The Pink Factor (Cancer)
http://thepinkfactor.blogspot.com/

Special Need for Positive Thoughts/Prayer/Whatever
"Untitled -- New Tumors Found"
Bomb in My Belly (Cancer)
http://bombinmybelly.typepad.com/my_weblog/

Treatment
"Vitamin D May Lessen the Pain for those on Arimidex"
Life with Breast Cancer
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

SharingOurDays HealthBlog Headlines -- 2-23-07

2007-02-23T04:26:00.000-08:00

Advocacy
"Field Trip No. 2: Lobbying in Olympia"
The Assertive Cancer Patient
http://www.assertivepatient.com/

Just Worth Reading
"Having Your Priorities in Order"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"Exorcizing My House"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

"Oxaliplatin & Oxalis -- Day 7 of this Cycle"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"What a Day..."
Richard French (Cancer)
http://rdfrench.spaces.live.com/

"A Couple of Things..."
My MS Journal (Multiple Sclerosis)
http://mymsjournal.blogspot.com/

"Home!!"
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

"Help"
NotPerfectAtAll (HIV/AIDS)
http://notperfectatall.blogspot.com/

Poetry
"Poetry Tuesday -- The Body Knows"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

Symptoms
" Come on Lord You Can Do It."
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

"Tremors Galore!!"
Day by Day with Parkinson's and Peripheral Neuropathy (Parkinson's Disease)
http://peripheralneuropathy.blogspot.com/index.html

Treatment
"Rest Day"
Another Dose!! (Hodgkin's Lymphoma)
http://jeffhartnett.blogspot.com/

SharingOurDays HealthBlog Headlines -- 2-22-07

2007-02-22T06:34:00.000-08:00

Just Worth Reading
"More Kindness"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"The Sweet Days of Playing Sick"
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"Guilt"
E. is for Epilepsy (Epilepsy)
http://epilepsy-paula.blogspot.com/index.html

"Lunch with Rhe De Ville"
Living in the Bonus Round (HIV/AIDS)
http://bonusroundblog.blogspot.com/

"Whoosh"
A Life Less Convenient (Lupus)
http://www.alifelessconvenient.com/

"Grumpy this Morning"
The Multiple Sclerosis Companion (Multiple Sclerosis)
http://mscompanion.blogspot.com/

Symptons
"Still Fighting Fatigue"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

Treatment
"More Test: Chapter 27"
traci-jerseygirl (Breast Cancer)
http://traci-jerseygirl.blogspot.com/

"Today, I Haven't Felt Healthy"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"Chemo Round Five is Completed"
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

"VNS Settings Changed"
Living with Epiliepsy (Epilepsy)
http://scott-lwe.blogspot.com/

SharingOurDays HealthBlog Headlines -- 2-21-07

2007-02-21T04:57:00.000-08:00

Just Worth Reading
"Day 129 -- It's a Bit Confusing"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

"Interventions"
Leafing (Caretakers)
http://leafing2.blogspot.com/index.html

"7, 8, 9"
Another Dose! (Hodgkin's Lymphoma)
http://jeffhartnett.blogspot.com/

"Self Portrait Challenge -- Black & White"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

Made Me Think
"Building Ourselves"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"Burdens Beyond the Cancer Ward"
NPR -- My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

Post-Treatment
"After Cancer Treatment"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

Sex
"Sex & Cancer"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

Treatment
"Breast Conservation"
Biography of Breast Cancer (Breast Cancer)
http://biographyofbreastcancer.blogspot.com/

SharingOurDays Headline Listing -- 2-20-07

2007-02-20T03:38:00.000-08:00

Thanks for bearing with me yesterday. My limited technical prowess did not extend to overcoming problems of connectivity while on the road. I'll do my best to prevent that in the future. Now, on to today's headlines...

Charities
"St. Baldrick's Foundation"
Laurianne's Hope (Lung Cancer)
http://lauriannes-hope.blogspot.com/index.html

Death
"Loss"
Appendix Cancer Survivor's Blog (Cancer)
http://appendix-cancer.blogspot.com/index.html

In Memoriam
"RIP Barbara Gittings"
Living in the Bonus Round (HIV/AIDS)
http://bonusroundblog.blogspot.com/

Insurance Companies
"Dear Insurance Company: Chapter 26"
traci-jerseygirl (Breast Cancer)
http://traci-jerseygirl.blogspot.com/

Just Worth Reading
"Chicken On The Run"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

"Field Trip No. 1: To Buy a Hallmark 'Cancer Card'"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

"The Robin in My Backyard"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"Plodding On"
Richard French (Cancer)
http://rdfrench.spaces.live.com/

"Here's to Dads"
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

Political
"President's Day '09: A Look Ahead"
Shawn's HIV Blog (HIV/AIDS)
http://blogs.poz.com/shawn/

Post-Chemo
"Freedom?"
My year of Healing (Breast Cancer)
http://mbupdate.blogspot.com/

Religious -- Christian
"God Given Opportunities"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

Symptoms
"Frosty Sunshine"
Surviving Multiple Sclerosis in Alaska (Multiple Sclerosis)
http://icensnow.blogspot.com/

"Testing... Testing... This is Only a Test"
Day by Day with Parkinson's and Peripheral Neuropathy (Parkinson's)
http://peripheralneuropathy.blogspot.com/index.html

Treatment
"Day 128 -- Back in Hospital"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

Technical Difficulties

2007-02-19T06:55:00.000-08:00

Hey Y'all,

We're having some technical difficulties on our end and won't be able to post today. Hopefully it will be solved by tomorrow. Sorry about that.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
seanspence@earthlink.net

SharingOurDays Headline Listing -- 2-18-07

2007-02-18T10:10:00.000-08:00

Family
"Happy Birthday Mom: Chapter 25"
traci-jerseygirl (Breast Cancer)
http://traci-jerseygirl.blogspot.com/

Just Worth Reading
"Click Out Cancer"
My Experience with Hodgkin's Lymphoma (Hodgkin's Lymphoma)
http://journals.aol.com/jackiepie/
MyExperiencewithHodgkinsLymphoma/ (broken link)

"Sunday Scribbling -- 'Crush' First Crushes"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

"The Crocuses are Up in the Yard"
Libbi's MS Journey (Multiple Sclerosis)
http://themonsterstory.blogspot.com/index.html

"On-Line Auction to Benefit MS"
Surviving Multiple Sclerosis in Alaska (Multiple Sclerosis)
http://icensnow.blogspot.com/

"Sleep? What's that???"
Day by Day with Parkinson's and Peripheral Neuropathy (Parkinson's)
http://peripheralneuropathy.blogspot.com/index.html

Made Me Think
"Accepting You Are Dying"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

Symptoms
"Day 127 -- Pneumonia This Time"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

Treatment
"Day 2 of Chemo -- Feeling Better"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"Round Five Begins!"
Ellie Skees -- Age 8 (Children/Cancer)
http://ellieskees.blogspot.com/

"Days 5 & 6: TLI in the Books"
Another Dose (Hodgkin's Lymphoma)
http://jeffhartnett.blogspot.com/

SharingOurDays Headline Listing -- 2-17-07

2007-02-17T05:19:00.000-08:00

Fun
"Post-Treatment Mid-Life Crisis, Chapter 4"
Biography of Breast Cancer (Breast Cancer)
http://biographyofbreastcancer.blogspot.com/

Just Worth Reading
"Fake Drug, Fake Illness: A New Urban Legend is Born"
The Assertive Cancer Patient (Breast Cancer)
http://www.assertivepatient.com/

"Mom"
Leafing (Caretakers)
http://leafing2.blogspot.com/index.html

Treatment/Research
"Coffee, Breast Cancer and Chemo Brain"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

SharingOurDays Headline Listing -- 2-16-07

2007-02-16T04:39:00.000-08:00

Community
"Like Groucho Said..."
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

Just Worth Reading
"The Thursday Status Report"
Leafing (Caregivers)
http://leafing2.blogspot.com/index.html

"Days 3 & 4"
Another Dose!! (Hodgkin's Lymphoma)
http://jeffhartnett.blogspot.com/

"Watch Me Die... On YouTube!"
Shawn's HIV Blog (HIV/AIDS)
http://blogs.poz.com/shawn/

"Video Diary #23: Valentine's Day Video"
Living in the Bonus Round (HIV/AIDS)
http://bonusroundblog.blogspot.com/

"Poetry Thursday -- Prose"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

"Cancer Stories: Shelli's Dad, Mike"
Laurianne's Hope (Lung Cancer)
http://lauriannes-hope.blogspot.com/index.html

"Back to Seattle..."
My MS Journal (Multiple Sclerosis)
http://mymsjournal.blogspot.com/

Special Need for Positive Thoughts/Prayer
"Sad Thoughts"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

Treatment/Research
"Herceptin"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

"Doctor Visits About Lyme"
Erik's MS Blog (Multiple Sclerosis)
http://blog.thesmithlife.com/

"Off with Their Heads!"
Parkinson's Straight from the Horse's Mouth (Parkinson's Disease)
http://parkinsonsfromthehorsesmouth.blogspot.com/

New to SharingOurDays -- Shawn's HIV Blog (HIV/AIDS)

2007-02-15T19:50:00.000-08:00

Hi Y'all!

Here's a good blog about Shawn, who has had HIV for quite a while. He seems pretty optimistic and has an easy, kind of hip writing style (he looks like his is in his 30's). Have a look.

http://blogs.poz.com/shawn/

Take care!

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

SharingOurDays Headline Listing -- 2-15-07

2007-02-15T05:44:00.000-08:00

Healthcare Finances
"The (High) Cost of Cancer Treatment: I"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

Just Worth Reading
"Still Spinning Like a Cyclone"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

"Day 124 -- A Set Back"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

"Light the Night Brunch/Award"
My Experience with Hodgkin's Lymphoma (Hodgkin's Lymphoma)
http://journals.aol.com/jackiepie/
MyExperiencewithHodgkinsLymphoma/ (broken link; cut & paste)

"Personal Update"
Never Give Up (Lou Gehrig's Disease)
http://billsims.spaces.live.com/

"Snow Clogged Arbor"
The Multiple Sclerosis Companion (Multiple Sclerosis)
http://mscompanion.blogspot.com/

"My Uplifting Valentine's Presents"
Day by Day with Parkinson's and Peripheral Neuropathy (Parkinson's)
http://peripheralneuropathy.blogspot.com/index.html

Living with Ongoing Health Conditions
"Depression After Cancer"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/depression-after-cancer/

Made Me Think
"Simultaneous Truth"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"Lose More Slowly"
NPR: My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

SharingOurDays Headline Listing -- 2-14-07

2007-02-14T06:03:00.000-08:00

Just Worth Reading
"The Mental Challenge"
NPR -- My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"Holding Steady"
Leaving (Caretakers)
http://leafing2.blogspot.com/index.html

"The Latest"
Ellie Skees -- Age 8 (Children)
http://ellieskees.blogspot.com/

"Days 1&2"
Another Dose (Hodgkins Lymphoma)
http://jeffhartnett.blogspot.com/

"Follies: A Picture Gallery"
Living in the Bonus Round (HIV/AIDS)
http://bonusroundblog.blogspot.com/

"This n' That"
Nightmare Hall (HIV/AIDS)
http://nightmarehall.blogspot.com/

"Self Portrait Challenge"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

"Cancer Stories:Blue's Mom, Sharon"
Laurianne's Hope (Lung Cancer)
http://lauriannes-hope.blogspot.com/index.html

Made Me Think
"Dying is a Downer"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

Treatment/Research
"Survivor's Guide to VNS: Part 9 -- Device Settings"
Living with Epilepsy (Epilepsy)
http://scott-lwe.blogspot.com/

"Valentine's Day"
My MS Journal (Multiple Sclerosis)
http://mymsjournal.blogspot.com/

SharingOurDays Headline Listing -- 2-13-07

2007-02-13T04:34:00.000-08:00

Healthcare Policy/Advocacy
"Back from Olympia!"
My MS Journal
http://mymsjournal.blogspot.com/

Inspired Me
"Epilepsy Heroes & Self-Loathers"
E. is for Epilepsy (Epilepsy)
http://epilepsy-paula.blogspot.com/index.html

Just Worth Reading
"Love Her Eyes and Her Wild Wild Hair"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

"Cancer Movies"
The Assertive Cancer Patient (Cancer)
http://www.assertivepatient.com/

"Stamina-less!"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"Update & Radio Clip"
Leafing (Caretakers)
http://leafing2.blogspot.com/index.html

"It's Been Too Long"
NotPerfectAtAll (HIV/AIDS)
http://notperfectatall.blogspot.com/

"Our Pre-Anniversary Celebration"
The Daily Warrior (Lou Gehrig's Disease)
http://mylifeasawarrior.blogspot.com/

"Leasehold Interest"
A Life Less Convenient (Lupus)
http://www.alifelessconvenient.com/

Made Me Think
"A Few Words Could Change a Life"
Dying Man's Daily Journal (Brain Tumors)
http://hudds53.wordpress.com/

"You Gotta Have Friends: Chapter 24"
traci-jerseygirl (Breast Cancer)
http://traci-jerseygirl.blogspot.com/

"There Really Are No Excuses"
My Cancer
http://www.npr.org/templates/story/story.php?storyId=5497708

Political
"Certificate of Inequality"
Living in the Bonus Round
http://bonusroundblog.blogspot.com/

Religious -- Christian
"Day 122 -- Getting Better"
Diary of My Battle with Cancer
http://donnewitt.blogspot.com/

"More than Conquerers"
A Pastor's Cancer Diary
http://cewilton.blogspot.com/index.html

Treatment/Research
"Taking Effexor for Hot Flashes
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

SharingOurDays Headline Listing -- 2-12-07

2007-02-11T18:06:00.000-08:00

Here are "today's" headlines from the blogs linked to SharingOurDays. We've tried to categorize them for easy access. The way we organize this listing will certainly develop in the coming days and weeks as we figure out how to make it most user-friendly. Note that many of these are from the last 24 hours, but many are older. I pulled all of the headlines from February. In the future, I'll just pull the headlines from the previous 24 hours. - sean spence (seanspence@earthlink.net)

Healthcare Policy/Advocacy
"Advocacy Conference 2007"
http://mymsjournal.blogspot.com/

Inspired me
"Butterfly Kisses"
My Year of Healing (Breast Cancer)
http://mbupdate.blogspot.com/

Just worth reading
"Overdue"
Bomb in My Belly (Cancer)
http://bombinmybelly.typepad.com/my_weblog/

"Day 121 -- No Church Today"
Diary of My Battle with Cancer (Cancer)
http://donnewitt.blogspot.com/

"Good Weekend -- Not So Much"
Living with Epilepsy (Epilepsy)
http://scott-lwe.blogspot.com/

"The Boost"
Another Dose (Hodgkins Lymphoma)
http://jeffhartnett.blogspot.com/

"Bravo to Broadway at Beadtime"
Living in the Bonus Round (HIV/AIDS)
http://bonusroundblog.blogspot.com/

"Advanced Germ Containment Device"
A Life Less Convenient (Lupus)
http://www.alifelessconvenient.com/

"Bartonella, Lyme and Multiple Sclerosis"
Erik's Multiple Sclerosis Blog (Multiple Sclerosis)
http://blog.thesmithlife.com/

"Signs of Spring Abound"
Libbi's MS Journal (Multiple Sclerosis)
http://themonsterstory.blogspot.com/index.html

"Getting Back to Normal"
The Multiple Sclerosis Companion (Multiple Sclerosis)
http://mscompanion.blogspot.com/

"Under the Weather"
Surviving Multiple Sclerosis in Alaska (Multiple Sclerosis)
http://icensnow.blogspot.com/

Downs & Ups with Daddy
Day by Day with Parkinson's and Peripheral Neuropathy (Parkinson's)
http://peripheralneuropathy.blogspot.com/index.html

Made me smile
"Vacay"
Biography of Breast Cancer (Breast Cancer) http://biographyofbreastcancer.blogspot.com/

"A Dog's Life"
As the Tumor Turns (Cancer)
http://spinningtumor.blogspot.com/

Made me think
"How I Cope"
Dying Man's Journal (Brain Tumor)
http://hudds53.wordpress.com/

"Control"
Appendix Cancer Survivor's Blog (Cancer)
http://appendix-cancer.blogspot.com/index.html

"Stoic? Not me. More about feelings"
Life Changing Cancer (Cancer)
http://dahlborg.blogspot.com/

"Why"
MOZARTMOVEMENT (Parkinson's)
http://mozartmovement.blogspot.com/

Poetry
"Change"
The Daily Warrior (Lou Gherig's Disease)
http://mylifeasawarrior.blogspot.com/

Political
"Like Pulling Teetch"
Nightmare Hall (HIV/AIDS)
http://nightmarehall.blogspot.com/

Recovery
"Recovery"
The Pink Factor (Cancer)
http://thepinkfactor.blogspot.com/

Related to Treatment/Research
"The Mammaprint Test Offers More Treatment Options"
Life with Breast Cancer (Breast Cancer)
http://blog.healthtalk.com/breast-cancer/life-with-breast-cancer/

"A Glimpse of the Grail"
A Pastor's Cancer Diary (Cancer)
http://cewilton.blogspot.com/index.html

Shameless Self-Blog promotion
"Training"
Missouri to Manhattan (Multiple Sclerosis)
www.MissouriToManhattan.com

Special need for positive thoughts/prayer
"We're All In This Together"
My Cancer (Cancer)
http://www.npr.org/templates/story/story.php?storyId=5497708

"Decisions, Uncertainty, and... Peace"
Ellie Skees, Age 8 (Children Blogs)

http://ellieskees.blogspot.com/

The new SharingOurDays "Daily Headlines"

2007-02-11T17:38:00.000-08:00

Hi Y'all!

I'd like to introduce you to a new SharingOurDays feature -- the daily digest. Starting tomorrow/Monday morning, to the best of my ability, I'm going to provide a daily listing of many of the headlines from the blogs collected on this site. They will be my recommendations for the day's reading. This way, you can quickly scan the headlines each day and you'll know if there is a blog post that might be of particular value to you.

The idea came from my friend John Combest, who keeps a daily listing of political headlines from news outlets here in Missouri. If you are interested in that sort of thing, I encourage you to check out www.JohnCombest.com. For politicos like me, it is well worth the 10 minutes each morning.

Hopefully this new feature will provide an ongoing tool for folks who are getting a benefit from learning about the lives of others. The rewards I have received from this little project have been immense for me, and I hope others will continue to find greater and greater benefit, as well.

Please let me know any time you have a suggestion for improving SharingOurDays. The whole point is to offer something meaningful to the members of our little community -- and YOU are the best person to help us improve.

Take care.

- sean

MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

New to SharingOurDays -- Laurianne's Hope (Lung Cancer)

2007-02-02T03:34:00.000-08:00

Hi Y'all!

Laurianne died of non-smoking lung cancer at 25; this blog is written by her sister, Lynda, and her father, Hankon. I have to say that non-smoking lung cancer freaks me out a bit. I smoked for the better part of 14 years (I'm 36 now and quit when I was 28 -- yes, the math of that is kinda scary). How can I be essentially okay after years of stupidity while this woman loses her life? Laurianne, wherever you are, my heart goes out to you today.

The blog talks a lot about Lynda and Hankon's feelings and also highlights stories of other folks that relate to their experience.

Check it out at http://lauriannes-hope.blogspot.com/index.html.

Have a great day!

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

New to SharingOurDays -- Leafing (Caretakers)

2007-02-01T05:46:00.000-08:00

Hi Y'all!

First, you might note that I'm adding a section to the blog for caretakers. There is a lot for us to learn and understand from those who take care of others with ongoing health conditions. To be honest, it makes me think about what the last 10 to 20 years of my life with MS will be like. Maybe they'll be fine, but I might need a lot of help. What if my legs don't work? What if I can't go to the bathroom by myself? Will there be anyone there for me? I honestly don't know.

"Leafing" is pretty intense at times. It is written by Carrie in Ontario, CA about her experience helping her mom, who has gallbladder and liver cancer, and her dad, who has Alzheimer's Disease. Double whammy. She is the kind of angel we should all have in our lives. Through her blog, we can, just a little bit.

http://leafing2.blogspot.com/index.html

Take care.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

New to SharingOurDays -- The Daily Warrior (Lou Gehrig's Disease)

2007-01-30T04:49:00.000-08:00

Hi Y'all!

I have had some requests lately for more blogs from people with ALS/Lou Gehrig's Disease. They are hard to find, but here is a good one from Tammy.

http://mylifeasawarrior.blogspot.com/

Tammy's profile:
Name:Tammy
Location:Northern California, United States
I'm a 45yr. old, newly married woman on the front lines fighting ALS(www.alsa.org). Life is good and I have won many battles but I need to win the war! This is my life as a proud warrior that has beat the odds with humor, faith and love. I have survived 16 years with much more to come.

"The Daily Warrior" is full of strength and beauty. Please check it out.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

We're back!

2007-01-29T04:42:00.000-08:00

Hi Ya'll!

Sorry there haven't been any new posts for the last week. My job has had a particularly intense week and SharingOurDays has suffered for it. I think everything is back on track now, though, and we should be back to daily posts.

Thanks for sticking with us! More tomorrow.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

New to SharingOurDays -- Appendix Cancer Survivor's Blog (Cancer)

2007-01-17T02:40:00.000-08:00

Hi Y'all!

Have you ever even heard of someone with appendix cancer? Apparently it is very rare. Carolyn's blog is about her experience with appendix cancer.

http://appendix-cancer.blogspot.com/index.html

Check out the excerpt below, and visit her blog. It will be worth your time.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

This excerpt is from Monday, January 15, 2007...

Life as a Cancer Patient
When I left the hospital after my appendectomy, I began my life as a cancer patient. I wasn't ready yet to use the term survivor, though I'd been told everyone alive with a cancer diagnosis was now termed a survivor. To me, a survivor was someone who was still alive 5 years later, or who had at least completed treatment. I had a long way to go.

I remember several things about my transition to life as a cancer patient. I remember waking up mornings and for an instant my morning would be normal. Then, once I was more fully awake, I remembered that my world had changed, it wasn't a normal morning. "Normal" was gone, I had cancer.I remember feeling so out of place in an oncology office at first, I felt I didn't belong there. I looked around the oncology office waiting room and saw people who had lost their hair, who were very thin, who looked ill. Was I one of them? I felt a mistake must have been made. I felt great, I felt healthy. I wanted to leave and go back to my normal life. But normal was gone.

I remember hardest part; seeing the pain my diagnosis caused my husband, my kids, my parents, my best friend, my sisters, my in-laws. And I couldn't make it better, I couldn't change it. My best friend summed it up best. She called me one day and said she just wanted to hear the dishwasher run. She said she wanted our normal back. She wanted our lives to be the way they were before I had a cancer diagnosis. She said she had been home contemplating my diagnosis and had heard the dishwasher run, and for a minute she felt everything was normal again, everything was the way it was supposed to be. She'd stood and just listened to the dishwasher and remembered normal. Normal. I mourned the loss of the normal life I had taken for granted. Life had changed so rapidly and so unexpectedly. Would life ever be normal again?

New to SharingOurDays -- Cheeky Librarian (Cancer)

2007-01-15T06:35:00.000-08:00

Hi Y'all!

Teresa alerted me to her blog for those with oral, head and neck cancer.

http://cheekylibrarian.blogspot.com/

I'm so glad she did because it is well written and shares a lot. Check it out!

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

New to SharingOurDays -- The Pink Factor (Cancer)

2007-01-14T06:16:00.000-08:00

Hi Y'all!

This is definitely something new for SharingOurDays. SusieQ has apparently been blogging for nearly a year, but wasn't writing about illness because she was just diagnosed with ovarian cancer last month. The blog provides an important portrait of someone before and after being diagnosed with an ongoing health condition.

SusieQ strikes me as brave and optimistic. Please check her out.

http://thepinkfactor.blogspot.com/

Take care.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

Update -- Ellie Skees (Children)

2007-01-11T04:06:00.000-08:00

Hi Y'all!

Below is an update from Ellie Skees, the beautiful eight-year-old girl in Orlando with cancer. It is an excerpt from yesterday's entry. Check out the whole thing (with some great pictures) at http://ellieskees.blogspot.com/

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

Wednesday, January 10, 2007

Photos!

Today is pretty much a quiet day for Ellie. She had a difficult night. She threw up once in the middle of the night and had some severe leg pain. The nurse came in an gave Ellie something to help her sleep, so the rest of the night was un-eventful. Last night the realization hit us that one of the anti-nausea medications is a steriod which always makes Ellie extremely hyper. She appears to be doing great...until the crash at the end of the day. Still, the benefits outway the side-effects of this drug, so there's not much to do but be aware of it. It's very tricky because it's hard to keep her from overdoing it when she appears to feel so well. The energy is a false energy that tries to just burn up instead of going back into Ellie's body for healing. So today we had a little talk, and thankfully Ellie is a very reasonable and logical little girl. As we were talking, her legs were boucing and her hands were moving constantly. Of her own accord, Ellie began doing some deep breathing (the way that we do for pain control...also to help Ethan "get his control back") and her limbs became still. She really seemed to grasp the concept. Putting it into practice on a moment to moment basis all day long (when she's trying to zoom her IV pole up and down the hall) is a little tougher, however...

New to SharingOurDays -- traci-jerseygirl (Breast Cancer)

2007-01-10T04:06:00.000-08:00

Hi Y'all!

We haven't added a breast cancer blog in a while and this is a good one:

http://traci-jerseygirl.blogspot.com/

Traci has written an awful lot about her experience with breast cancer (as well as her mother's experience with it). It is a good skim for someone who does not have cancer, and a must-read for anyone who has cancer of just about any kind.

Take care.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

New to SharingOurDays -- Never Give Up (Lou Gherig's Disease)

2007-01-09T04:51:00.000-08:00

Hi Y'all!

Here's the first post in a new category for SharingOurDays -- Lou Gherig's Disease. Powerful stuff and interesting to read. Bill seems to have an approach to life that could benefit all of us.

http://billsims.spaces.live.com/ -- excerpt below

Take care.

- sean

Sean Spence
MS Advocate and Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

This excerpt is from January 4:

Random Observations

A few observations and other things I've learned sinceI became ill.

People are much kinder than I ever imagined. There have been so many acts of kindness bestowed on me by friends and complete strangers that I can't begin to list them all.
Most people talk too much and listen far too little, including me before I lost my voice.
It's amazing what you can learn to do with your toes, and your nose, once you lose the use of your hands.
Itches, even things that itch terribly, will go away on their own given enough time.
I wish I'd bought my Select Comfort Sleep Number bed years ago.
Your bowels aren't controlled by motor neurons.
Having good disability coverage is much more important than having life insurance.
I would rather have my arms and legs cut off than lose the ability to speak, seriously!
I'm told that brushing someone else's teeth is incredibly difficult.
Wiping someone else's behind is an act of love.
Your head is much harder and stronger than you think.
Your tongue does a heck of a lot more than just taste food.
Not a day goes by that I don't see the hand of God working in my life, I just wasn't paying attention before I got ill.

New to SharingOurDays -- Notes from an Alzheimer's Caregiver

2007-01-07T06:25:00.000-08:00

Hi Y'all!

After a request from a reader for Alzheimer's blogs, I searched and searched for one that I thought would make sense for SharingOurDays. Man, it was tough. I finally found "Notes from an Alzheimer's Caregiver" at http://alzheimersnotes.blogspot.com/.

You should definitely check it out. And please let me know if you know of any others.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
seanspence@earthlink.net

New to SharingOurDays -- Diary of My Battle with Cancer

2007-01-02T05:48:00.000-08:00

Hi Y'all!

Check out "Diary of My Battle with Cancer" at http://donnewitt.blogspot.com/

This will particularly appeal to readers who are more Christian than others, but has value for pretty much anyone. Don is a pastor in New Zealand and has an interesting perspective. It reminds me, by the way, that I'm having a hard time finding blogs from folks of other religious persuasions, or even other races. If you have any suggestions, please let me know.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

Happy New Year!

2007-01-01T07:28:00.000-08:00

Hi Y'all!

I'd like to start the new year by thanking everyone who reads the site on a regular basis, and everyone who has a blog listed here. I have learned amazing things in the last couple of months, since starting SharingOurDays. And it has amazed me that people visit the site from all over the world, every day.

Very slowly, we are starting to build an audience, so I'm going to keep scouring the Web for blogs that I think we will find interesting. Please continue to post or e-mail me (which happens more often, oddly) any time you have suggestions for improving the site, or for blogs that should be added.

Thank you for your time and interest. Good luck in your journey. Thanks for sharing.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays.com
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

New to SharingOurDays -- A Life Less Convenient (Lupus)

2006-12-31T11:52:00.000-08:00

New SharingOurDays reader Sue Cline has suggested a blog that is one of the most impressive I've seen. Incredible images and writing. Jen Burke is the writer and she has lupus; I am incredibly impressed with the work she produces basically every day.

http://www.alifelessconvenient.com/

Here is an excerpt from December 25, 2006:

Drag is not an option
By Jen at 12:44 am on Monday, December 25, 2006

As soon as you put on a mask or go in drag, your world is a tad distorted. Your world shifts as others’ perceptions of you change.

Business drag: put on your suit, get your game face, and go.

The fact of my disclosures here changes what kind of mask I can wear for future employers and clients. That said, for employers and schools since ‘98, I have had to disclose my illnesses to receive accommodations under the American with Disabilities Act. If folks don’t know that I’m ill and have proof of my claims, there is no way they can be expected to make any reasonable accommodations.

In disclosing, I give up privacy. Privacy in exchange for equalizing the playing field by giving me a route around my limits. My disabilities are invisible, unless you’re seeing me at a doctor’s office maybe, or see me limping on a bad day, or something else along those lines. For the most part, people have told me they would have no idea that I was sick based on appearances for the most part (some days, I look green and not nearly as cute as Kermit); appearance-wise, folks have told me that I look like the healthiest one in the room (which was kinda scary occasionally, considering how thin I was at various times over the years when people made this remark).
“But you don’t look sick.”

No, I don’t, and I make every effort to look as good as I can, which is why I’m hyper about maintaining weight and staying fit. And that extra helping of blush didn’t hurt me none, yet looking healthy in some ways gives me a different problem: I have to convince people of sickness and its impact on my life without making myself sound like I will be terminally incompetent.

By default through disclosure, I give up the disguise of the professional, of wearing business drag, because I have told employers, schools, and most recently the bar about the facts of my life, about the facts of inconvenience, altered schedules, and altered states.

Early in the disease, I was learning through trial by schedule. I didn’t know what I could and couldn’t do. The only thing to do was to try something and then see if I crashed and by how much. Now, there is no point in being anything but honest in my limits, since the truth of illness comes out anyway, especially since I’m at a hospital at least once a week and normally more.
The encouraging part of the post for those who are in the same boat and wondering: clients have never questioned me. I negotiated fair deadlines that took into consideration some days of possibly being flat on my ass - just in case because I can’t take my body’s ready performance for granted.

As for employers: when I was resuming and interviewing heavily in ‘04, firms were receptive to what I listed as my needs and the fact of illness once I disclosed in the interview. I was hired despite my limits because of what I presented in my resume. The biggest health-related disruption in my life then that altered my work with a firm had nothing to do with my health; it was my mom’s cancer diagnosis. The responses that I received in ‘04 were the biggest boost to my confidence - the responses to my work weren’t being altered because of my illness and that employers still looked at what I produced over the years in law school and at work.

The downside I’ll describe in terms of what I’ve learned: I’ve learned that many people simply don’t know *how* to work with someone who has a disability or is chronically ill, which means I have to provide the know-how and roadmap for how to make it work, how to set deadlines, how to set up communication and quality checks and so forth. I’ve also learned that if an employer still has the mindset that you *must* show up 8-16 hours a day in one physical location everyday, we simply aren’t going to work out, but that is the truth that everyone knows: not every person is a good fit with every employer.

New to SharingOurDays -- Richard French (Cancer)

2006-12-28T04:31:00.000-08:00

Richard is a teacher in England who does a great job of telling us about his treatment and pretty much every aspect of his life. It is a very active blog with lots of pictures. Pretty cool.

http://rdfrench.spaces.live.com/

Here is an excerpt from December 28, 2006:

Day 93 [C1D14] - Flat, Tired & Soooo Unmotivated
Thurs 28th - Healthy So Far

The really good news is that 14 days in to the first cycle and so far, as far as I'm aware, I haven't experiencd any major side-effects to the chemo. There are niggling minor side-effects such as nausea and occassional vomitting (hope you're not eating your breakfast!), and the infamous metallic taste and feel, oh and aching feet and limbs. The biggest impact, however, seems to have been to wipe me out of any motivation for anything, I'm assuming that this is part fatigue and part psychological.

Since last Wednesday I've felt incredibly flat, there seems to be no fuel for any form of enthusiasm or motivation, from eating through to Christmas. Of course there is the outside possibility that this isn't to do with the treatment at all and that in fact I've simply, and finally, evolved in a to a super couch potato!!!!

New to SharingOurDays -- My Year of Healing (Breast Cancer)

2006-12-25T02:11:00.000-08:00

You'll like this blog from Mary. She writes very long entries, with lots of detail -- plenty of it emotional, plenty of it medical, and lots of personal insights.

http://mbupdate.blogspot.com/

This is an excerpts from Friday, December 22, 2006:

To B or Not to B
One of the many positive outcomes of this cancer experience has been having so many wonderful people walking beside me along the journey. Of course my friends and family have been with me every step of the way, but I have also met a lot of new friends along the way. Alice, one of Bo's landscaping customers and a breast cancer survivor herself, is one of my new friends. Ever since she heard about my diagnosis from Bo, she has been doing so many things to support both me and our family - from sending cards, books, and gifts, and baking blueberry pies (my favorite), to arranging dinners to be prepared and delivered by the ladies of the Stonehouse neighborhood for the entire month following my surgery. This week, she scheduled an appointment for me to go to Richmond to get fitted for my prosthetic breasts. (Alice had a lumpectomy and didn't a prosthesis; however, she had visited this particular store for wigs while she was undergoing chemo.)

Thank You, and Merry Christmas!

2006-12-25T02:05:00.000-08:00

Okay, not everyone does Christmas, but I do, so I wish everyone the best on this holiday that is important to me and my family.

For everyone else, happy holidays! These days mean so many different things to the people who visit SharingOurDays. Some of them wonderful and some of them pretty crappy. Whatever is happening with you right now, I wish you your own piece of happiness today. We all deserve it.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
www.MissouriToManhattan.com
seanspence@earthlink.net

New to SharingOurDays -- Ellie Skees, Age 8 (Children)

2006-12-22T03:21:00.000-08:00

Jeez, it is hard to not get a little teary as I write this. Today I'm blogging in with the first entry about a child with cancer. Her name is Ellie and she is eight. The blog is written by her mother. Now I've read more and I dare you to read it and not cry. But you'll also find the strength of an amazing little girl and the family who loves her.

http://ellieskees.blogspot.com/

Here's the entry from Wednesday, December 20...

Snowglobe Surprise!

Yesterday we went to Michael and Kathy's (John's uncle and aunt) for a visit, and ended up staying over night and all day today. We had a great visit, and it was like a mini-vacation for me. I was able to read, watch TV, and enjoy my computer (after Michael fixed it for me...it had been doing some strange things lately). I even got the creative outlet I had been needing - I was able to rearrange Kathy's living room. In case you are wondering, no I do not randomly go around rearranging people's furniture (that would just be rude)...I had been helping Kathy with this before Ellie got sick, so it was a continuation of a former project fo me. (O.k, I guess I'm kind of lying...if you're reading this, then in all likelihood I have rearranged your furniture before...maybe more than once...maybe even long distance with pictures or over the phone...drawn diagrams on napkins in restaurants...or perhaps talked about it but never gotten to it - yep, that just about covers all of you except the ones I haven't met. How rude!) Sorry, back from that rabbit trail. Ellie had fun too - yes, I do remember that I have a daughter. She had a blast - she watched TV, sat in front of their new and beautiful fireplace, watched families of racoons come up on the back porch to eat the cat food, played on the computer and got some special attention from Michael and Kathy. John was working both days, but he stayed the night with us.

Tonight when we arrived home, there was a gigantic inflatable snow globe in our yard waiting for Ellie from Jenn & Jim and family, Mom and Gary, and Grandma Jean and Grandpa Jim! I woke Ellie up just before we pulled into the driveway and she was shocked. When she finally got her bearings, Ellie jumped out of the car and ran across the yard. I did get some video, but I'm having some technical difficulties with putting it on the blog, but I do have a picture of when they set it up.[Thanks guys for doing such a special thing for Ellie - she was so excited! She has been admiring other people's Christmas decorations, especially the snow globes. Thank you, Jenn for coming up with such a wonderful idea. I'll try to get a good picture on tomorrow of Ellie in front of it in case I can't get the video to work.]

Ellie has a clinic appointment to check her blood levels. I think everything is dropping, particularly her hemiglobin. It will be good to find out if she needs any transfusions before Christmas. We also plan to bring Ethan home tomorrow...I just need to unearth his bed. We miss the little guy, and I know that he's puzzled and disturbed because of all the upheaval. He's happy and doing well for the most part, but he sometimes has dreams and thoughts that he's never going to come home again. He also dreamed one night that I left him in a building. I know, it's so sad. As soon as he's home again, he should see that we are still the same famly that we've always been. Poor little guy. He sometimes says "Mommy (or Daddy) tell Papi and Bubbie 'thanks for taking care of my little buddy'." We obligingly (and gladly) thank them and for some reason that just tickles his little heart.

Oh, I also wanted to let you know that if you post comments, you may want to check back on them because I do try to reply to them, particularly if you ask questions. Also, if you sent in a comment but haven't seen it posted, or I never answered your questions, please re-post your comment. I know that I have lost at least one...I accidentally deleted it before it posted...anyway please don't hesitate to try again. I'm so sorry if I've missed any. I do enjoy hearing from you, you are all so encouraging and it always blesses my heart to know so many people are out there loving us and praying for us. Thanks so much!

Entry I like from "Breast Cancer Victory"

2006-12-21T05:44:00.000-08:00

Here's an excerpt from one of the blogs we track, Sylvie Fortin's "Breast Cancer Victory." Chemo is starting to get to her. Sylvie is tough, though, and I'm betting she's going to be just fine.

Check out www.breastcancervictory.com

Here's an except from yesterday's entry...

Halfway Done And I Hit A Snag
20 Dec, 2006
Well, it’s hard to imagine, but I’m already halfway done with my chemotherapy treatments (yippee!). And there’s something I’ve learned along the way…

It gets tougher as the treatments progress.

I don’t know if it is like this for other chemo patients, but I have found that with each treatment, I get more and more tired and feel more dragged out. Napping is becoming less of a luxury and more of a necessity each time I have a treatment.

New to SharingOurDays -- My Bladder Cancer Journey

2006-12-20T07:46:00.000-08:00

We had a request to find blogs related to bladder cancer, so here we are. This first is from "A Dived Reef," who often posts more than once a day.

http://my-bladder-cancer-journey.blogspot.com/index.html

The following post is from Tuesday, December 19...

Perspectives

I was out this morning and talking to an old friend who has to have heart surgery. It was an interesting conversation as the worry is that it is 4 months to get the angioplasty and "I could drop dead tomorrow!" So one of the things he is doing is sorting out all the "dead" things in a "Dead File" - who to contact, what bank accounts and insurances are held where and so on. That brings it home to you having to sort these tings out. I have most of my stuff well organised but I don't have a dead file yet. It wouldn't be a bad thing to make sure that everything was in order and available rather than trying to sift through my office and find it all.

Bit of a sobering thought. I guess if I did it next year as a project it may be useful - not that I am planning on doing anything that would need it but just in case of course :-)

New to SharingOurDays -- This Cancer Survival

2006-12-19T08:28:00.000-08:00

Nancy is in Canada and offers her very genuine account of her fight against cancer with a not-so-supportive family (that's my undertstatement for the day). Don't read this blog looking for much sunshine.

Here's the most recent post, from Monday, December 18, 2006...

open letter to my father at christmas time

I recently had to debase myself and ask my father for a loan to pay for a Speech Language Pathologist. Despite my Canadian address, rehabilitation for cancer survivors is not paid for by the government. They'll be happy to save your body, but to hell with your life!!

(Someday I'll tell you about how my father's wife once told me that not only do I NOT deserve financial support for my disabilities, but that I should pay the government back for my cancer treatment. She wasn't even trying to insult me ... she actually believed this drivel.) My father thinks that my reports about late effects are lies. (umm, New England Journal of Medicine?)

Here's an email I'm working on to send him (if only ...):

Since you mentioned it, if you're truly interested in improving my well being there are a number of things you can do. First is to starting insisting that your wife take full responsibility and apologize for her abhorrent and abusive attack against me in your home, that happened now more than three years ago.

And to apologize for the abusive and malicious comments that she's made in reference to my struggles. Namely, that "she pities me". I can't tell you how demoralizing it is to see you put your own selfish need to pacify your wife before defending your own daughter's right to be treated with dignity, honesty and respect.

Second is to acknowledge the full truth of the damage that has been done to me by way your abandonment and neglect and dismissal of my health issues. Instead of believing in me and advocating for me, you joined with the health community and wrote me off as a mental case in need of chemical restraints, restraints that you were only too happy to provide as a dutiful pharmacist and eminent business owner in our modest little hometown.

So not only failing as a father, but also corrupting your professional life. This ended any possibility of a public apology, since saving face publicly was priority one. Tell me, how DO you sleep at night. (Oh yeah, the easy access to narcotics.)

The point being, who the hell are you to expect a detailed explanation about what late effects treatments are for?

You've consciously chosen to remain ignorant about my situation and then are arrogant and presumptuous enough to interrogate me, in a pathetic attempt to save face and continue to undermine and ruin my reputation and credibility.

And, scene!

Entry I like from "Life Changing Cancer"

2006-12-15T05:02:00.000-08:00

Here's an entry I like from Lynne Dahlborg's blog, "Life Changing Cancer." It is from Monday, December 11th. There is a permanent link to the site here at SharingOurDays if you ever need it.

http://dahlborg.blogspot.com/

Expectations

Expectations are dangerous things. We can have "good" expectations, or more accurately, expectations of good things to happen . . . "I'm looking forward to Christmas, it's going to be wonderful!" (words either of my children could speak at any moment in the next two weeks), and expectations of bad things to happen . . . "I'm worried that that pesky, damn spot of cancer in my abdomen was a metastasis, or can cause a metatasis because it connected to my lymph or blood system." (The last part is according to the pathology report that was available this past Friday, and these are thoughts I've been having a lot over the last few days.)

Why are either of these dangerous? While anticipation and yearning can be powerful, intense feelings, and windows to some of our internal process about an upcoming event, deciding how that event is likely to unfold is dangerous. I learned some of this perspective years ago when I took a weekend workshop with two women who then referred to their work as "The Love Project." They have since changed their name to Teleos Institute, and like most ongoing projects out in the world, they have a website. "

Have no expectations, but rather abundant expectancy" was one of the original "Love Principles" articulated by Arleen Lorrance of the then "Love Project." A full list of the principles can be found at their website, and I'm including them here as well. While they are essentially simple, they can also be unpacked to provide useful principles for changing the way we think about ourselves, our lives, and those we encounter on our life journey.

Receive all people as beautiful exactly as they are.Be the change you want to see happen, instead of trying to change anyone else.

Create your own reality consciously.Provide others with opportunities to give.

Have no expectations, but rather abundant expectancy.

Problems are opportunities.

As I thought about writing about expectations, expectancy, and the ideas of Diane K. Pike and Arleen Lorrance of Teleos Institute, I reflected on the number of times in the months since I began this blog that I have discussed and described some workshop I've attended in the past.

So, I want to name that yes, I did attend a lot of workshops, that I saw them as part of my spiritual journey, and now I'm happy to name one or more pieces that I got from doing the work I did. At least the learning isn't all lost to time!

So, about my expectations. Okay, so I remember the principle, but I don't always live it fully, I admit. As time passed with my clean scans, I expected to feel delighted and relieved to reach the six month mark without needing treatment and without experiencing additional effects of the gallbladder cancer. Instead, I admit I've spent the last four weeks, since the week before my November 17 scan, worried. (I just counted the weeks, to see if my sense was indeed correct, that's it's been that long.)

So, the six month anniversary of my diagnosis has come and gone, and I haven't been feeling lighthearted and pleased, but rather anxious and fearful. How can I shift from my anxiety to a place of expectancy, or openness to the possibility of "good" things, and a trust that if "bad" things happen, I can handle them? Just asking the question helps me begin to think about it all differently. If I am committed to living fully in the time I have (and I am), then living in fear and anxiety is not fulfilling my deep desire. Feeling that desire, that yearning, and withdrawing my expectations of outcome and timing can be a good place to start. Don't misunderstand, it's not that I don't want to live many, many more years. It's just that I don't want to miss the moment, the present, the now of my experience because I'm worrying about what's going to happen next month, or in six months, or a year, or five years. I think that expectancy is about living in the now, and not in the unknown future. That's what I want, to be here now.

New to SharingOurDays -- As the Tumor Turns (Cancer)

2006-12-13T13:33:00.000-08:00

Dang, this one is going to kick your ass a little bit. Lymphopo is "a single woman in my fifties, in debt, no income, no health insurance, and then that grapefruit-sized tumor wedged between my lungs turns out to be a malignant high-grade highly aggressive stage IV lymphoma. How much worse can it get? Bwahahaha! Stay tuned and find out."

The writing is good and the perspective is important, powerful. If you want an extremely personal perspective on life within the U.S. healthcare system, here you go.

http://spinningtumor.blogspot.com/

The following post is from Monday, December 11, 2006...

I Hurl Like A Girl
"This is not a novel to be tossed aside lightly. It should be thrown with great force." -Dorothy Parker

You're always hearing people blather on about how cancer made them a better person. Not me. I can't say that cancer has made me a better person, but I sure as hell can say it's made me an angry, bitter person. And, somewhat unexpectedly, it has also taught me how to pitch a blazing two-hundred-mile-an-hour fastball. Or rather fast book. Specifically, those ubiquitous "inspirational" cancer books.

These two gifts from cancer, the bitterness and the pitching, are not unrelated. And raise your hand if you're shocked to hear: it's all about the money.George Scott once said, "Nobody throws harder than Nolan Ryan. Not even God." But ol' George had never seen me take on a pile of "inspirational" cancer books.

The first book I hurled so hard it broke the sound barrier was Lance Armstrong's famous cancer story, It's Not About the Bike: My Journey Back to Life. Go read the 700 reviews on Amazon: I don't think there's one that doesn't use the word "inspirational." The message being, See? If Lance Armstrong can beat advanced cancer and go on to win the Tour de France, YOU CAN TOO!Feh. I admire what Mr. Armstrong has done and all, but how in the hell am I, a middle-aged bankrupt uninsured nobody, even remotely like this superhumanly fit young billionaire celebrity? As soon as he was diagnosed, Armstrong held a press conference announcing the bad news, and within hours dozens of the planet's leading oncologists were clambering aboard his bandwagon. Twenty-four hours later his crack team of brilliant cancer luminaries started his treatment.

My diagnosis at the underfunded overcrowded public charity Hospital for the Indigent Damned was delivered to me by a 12-year-old rotating resident whom I never saw before or since. And even though I have an extremely aggressive stage-IV cancer, it was another six weeks before my treatment began.

According to a new study being presented this week at the American Society of Hematology convention, "Patients from deprived areas had a higher relative risk to die compared to patients from affluent areas...The existing deprivation gap in relative survival for both men and women confirms that cancer survival depends on socio-economic background and is inequitable."

Survival: it's all about the money. I bet fame doesn't hurt either.

The second book I tossed aside at Mach 2 was Breast Cancer Husband: How to Help Your Wife (and Yourself) during Diagnosis, Treatment and Beyond by Marc Silver. The underlying assumption that runs throughout this book is that the readers are overwhelmingly affluent and insured.

In a chapter called "The Price of Looking Pretty," Silver tells the BC husbands: "If you've got the cash, don't scrimp. A wig fashioned from luxuriant human hair can run well over $1,000. For that price, your wife gets hair that shines and swings." Hmmm, let's see, shiny swingy hair, or paying the utility bills this winter? Tough decision.

In a chapter called "Hey, Big Spender," Silver writes: "The New Normal isn't just about coping with the specter of cancer as well as lingering side effects. It's also about enjoying every day. For many couples this leads to what women jokingly call 'the tumor upgrade.' In other words, retail therapy." New cars! Exotic vacations! Remodeled kitchens! And, he adds, "Guys deserve a treat too. Hey, you were a good caregiver. Go ahead, knock yourself out!" Followed by stories about men who treated themselves to sports cars, drum sets, and new SCUBA diving gear as rewards for being such good breast cancer husbands. I nearly broke a window pitching that one.

Even the books that I liked were chock full of privilege and supersonic hurl moments. In young handsome hotshot actor Evan Handler's Time On Fire: My Comedy of Terrors, he tells about how his influential well-to-do parents pulled strings to get him into the best program with the best doctor at Sloan Kettering. Fwooosh!

In The Red Devil: A Memoir About Beating the Odds, young beautiful hotshot editor Katherine Russell Rich remarks that a big advantage of living is Manhattan is that there are more oncologists to fire. And fire them she does, any time there's a personality clash. Zing!I don't have this little luxury over at Our Lady of the Damned. There's only one board certified oncologist on staff, and he doesn't even see patients. He just comes in from his private practice one day a week to instruct and oversee the residents. But on the bright side, I'm rarely assigned the same rotating resident twice, so any personality clashes can't last more than the requisite 7 minute clinic visit."

Cancer survival depends on socio-economic background and is inequitable." And inequitabilty makes me bitter. Once upon a time, I had health insurance. Until I turned 50 and the premium outstripped my income. But it was a lousy limited policy, and even if I had been able to keep it, this cancer would have bankrupted me.

Sometimes I come across web sites that make me so angry I want to pitch my computer out the window. But here's one that made me slam my forehead against the keyboard and cry: The Lime Project. It's about Heather, a 34-year-old potter who was recently diagnosed with Hodgkin's lymphoma. A bunch of her friends have put on a fundraiser, posing naked for a cheesecake pinup calendar they're selling to raise money for Heather's medical expenses."

Unfortunately, Heather has no prescription coverage on her medical insurance, and because she is working, she doesn't qualify for government aid," these friends tell us on the web site."

The medications that will keep her alive physically are going to kill her financially, and even if she survives the cancer, she may not survive the debt...the medical bills keep rolling in, much faster than her salary can cover them. We're naked so Heather doesn't go broke. So buy a calendar. Or five. Or just donate. Or buy pottery from Heather- she can finally make things again after not being allowed to touch any clay during the course of her treatment. But help us help Heather. We love her. And none of us want to see her win her fight against cancer, only to be held under crushing debt for the rest of her life just to stay alive."

Is this a fucked up inequitable world or what, when even an insured cancer patient's buddies are reduced to stripping and posing naked on a calendar so she can afford medical care? And then people try to blame it on the Prednisone when I can't stop crying.

So, dear readers, let's review what we've learned today: The existing deprivation gap in relative survival for both men and women confirms that cancer survival depends on socio-economic background and is inequitable. I just want you all to read those words one more time. Especially the word inequitable. This means that some lives are valued more highly, and are more worth saving than others.

Anyone want to join me for a pint of bitters?

The only cancer book I've loved totally and without reservation. RIP Miriam.

New to SharingOurDays -- Surviving MS in Alaska

2006-12-11T05:55:00.000-08:00

This is kind of a fun one, from Michelle.

http://icensnow.blogspot.com/

This post is from November 2...

Back to Winter
I had a good time in San Francisco, I really enjoyed spending time with my daughter. I never has soo many comments about how young I look. She would call me "Mom" and people would stop and asked if they heard right. Most people think we are sisters. Sound's like bragging, it's not, it's just funny. It runs in the family. My mom came to pick me up when I was a junior in high school and SHE got stopped by a teacher asking her for HER hall pass, I was disgusted, not understanding. My mom just laughed. NOW I understand :)

San Francisco has a CRAZY bicycle scene! I wanted to rent some bikes and ride, but we couldn't fit it in. So now I'm back, work is a nightmare. 3 people walked off the job in 3 weeks. State jobs aren't as great as they used to be. My workload is the largest it's ever been. I can't wait until this weekend, work is wearing me out. It's cold here, in the 20's. It's actually good winter biking weather as everything is frozen, easier to ride in than slush. We have a few inches of snow. Lots of sparkly frost. The sun was shining bightly this afternoon, it was really beautiful.

I had no MS problems in San Fran. That was nice. I was good and took my shot every night. I have to take a day off the shots every now and then as I get sore. I can only inject in my mid-section, I don't have enough sub-q fat on my arms and legs, the med was getting into the muscles which is really painful, causes hours of cramping. Taking a day off the shots once a week helps it all heal up a bit.

I hope everyone is doing well, I have not had time to check anyones blogs lately.

Hey Charles, I fixed you link, sorry about that. It should work now!

Life is good, everyone!

Teri Garr's birthday

2006-12-11T05:53:00.000-08:00

Yes, today is Teri Garr's birthday. For those of us who follow the world of MS, we know that Teri is one of the great ambassadors for our community. She has accomplished so much, separate from her ongoing health condition, and I, personally, am grateful she has turned her attention and talent toward making things better for the rest of us.

New to SharingOurDays -- E. is for Epilepsy

2006-12-02T08:16:00.000-08:00

Here's a great one from Paula Apodaca about her life with Epilepsy:

http://epilepsy-paula.blogspot.com/index.html

Here's how she describes her blog:

There are social barriers that keep people with E. out of normalized life. I want to talk about these things, so my blog isn't about treatments or surgical techniques. To me, it's more important to talk about E. with an emphasis on the experiential, social and cultural elements of epilepsy, in place of the medicalized jargon we have all been subjected to.

New to SharingOurDays -- Living with Epilepsy

2006-11-29T06:52:00.000-08:00

A reader requested that we add a section for epilepsy-related blogs. There aren't as many out there as I would have expected, but I've found some good ones, and here is one from Emeriol. You have to wade in just a bit to get the real value of it, but I found it well worth my time.

- sean

This post is from November 20, 2006...

No more seizures
I have not had any more tonic-clonic seizures since the last one I had at work. Since then, I printed out about 200 seizure first-aid cards and the director had them passed out to all of our staff. Hopefully if I have another one, my co-workers will be better prepared to take care of me. That, and another 200 people will have received detailed information about taking care of people who have sizures. I'm sure they will run into more than just me...

Link List at Bottom of Page

2006-11-27T03:24:00.000-08:00

Hey Y'all,

I'm not sure what has happened, but all of our site links have moved to the bottom of the page. I've probably screwed something up and will try to figure it out tonight. Until I do, just scan down to the bottom of the page for all links.

Sorry for the inconvenience.

- sean

Reader Suggestion -- Bomb in My Belly (Cancer)

2006-11-27T03:12:00.000-08:00

This cancer blog was suggested by Lynne Dahlborg (Life Changing Cancer -- http://dahlborg.blogspot.com) and can be kind of sad, but extremely well written and thoughtful, not to mention very funny at times. The writer is Louise Anonymous and I think I may love her just a little bit.

Thank you so much for passing this on, Lynne!

- sean

This excerpt is from November 23...

Finis

So the online discussion took place today. I'll talk about that another time.

I also had my CT scan today. (Yes, the technician asked if I might be pregnant; I politely told him I had a hysterectomy). Radiant1 posted a comment in response to this postscript explaining that technicians are required to ask the pregnancy question, and asked him- (or her-) self how I would prefer techs handle the question. I understand that it needs to be asked -- better I be affronted for a moment than have someone expose her fetus to radiation. What bothers me is when the tech has clearly read my file and requisition, both of which clearly state that I am a 26-year old female who is having a pelvic CT for ovarian cancer follow-up. Today the tech knew the name of my oncologist, that I hadn't had blood work to test my kidney and liver function, and that I had had contrast pelvic CT scans in the past. Ding ding ding! What does that suggest? That perhaps as a gynaecological cancer patient I've had a hysterectomy?

I think I would prefer that instead of asking the pregnancy question of gyn/onc patients, techs ask "Have you had a hysterectomy?" And if the answer is no, then they can ask "Is there any chance you may be pregnant?" Obviously if they don't know someone is a gyn/onc patient, then they can't tiptoe around the pregnancy question. Hell, in the end I don't know how much I care about the whole thing. It bothers me, yes. But it certainly shouldn't drive me crazy. They're only doing their job, after all.

New to SharingOurDays -- Another Dose! (Hodgkins Lymphoma)

2006-11-25T05:57:00.000-08:00

Hey Y'all,

Here's a blog from Jeff, who has Hodgkins Lymphoma. What I particularly like is that Jeff has a huge nework of supporters who contribute to his blog on a regular basis. If we all had a network like this, life would be a lot easier.

- sean

"If you fail to plan, you plan to fail"

After last week's bombshell, this week has been spent developing a plan of action for handling my relapse. I ended up not getting my port placed on Tuesday, since we wanted to hammer our the exact details of treatment before geting carried away.

Basically, my PET shows 4 or so cancerous masses in various locations around my chest, and some activity in my neck (where presumably this all started). My doctor, Jeffrey Wolf, Craig Moskowitz from Sloan-Kettering in NY, Stephen Foreman from City of Hope in LA, Michael Kaplan from Stanford, and Patrick Swift from here in Berkeley all have agreed on the same treatment.

Here's the low down:

Month 1: 2 cycles of chemotherapy, each cycle will be 3 straight days of chemo. I'll be in the hospital since it's a tough couple of days on the body. I'll have a week, possibly 2, off, then a second round. The regimen is called ICE for the type of drugs used (ifosfamide, carboplatin, etoposide).

Month 2: 4 weeks of radiation. A half-hour or so each day they fire up the X-Ray machine, and aim it straight at anything that's left after the chemo.

Month 3: A Stem-Cell Transplant (also known as a bone marrow transplant). This is pretty rude procedure meant to annihalate any remaining cancer left in my body. So there it is, it appears that the next couple months are all planned out pretty well. I need to spend the next week or so getting things in order, and figuring out what I'm going to do about school. I'm also considering continuing the treatment back in NY, possibly at Sloan-Kettering, or someplace closer to Albany. Those exact details need to be hammered out, but in the meantime I'm planning on starting the first rounds of treatment here, since regardless of the location, the treatment will be the same. I head in to the hospital Monday morning, they'll place my port (permanent IV), then do a quick biopsy to double check that the cancer is still hodgkins.

Phew, what a week!

-Jeff

New to SharingOurDays -- My Experience with Hodgkins Lymphoma

2006-11-23T05:45:00.000-08:00

Here's a great blog from Jackie about her experience with Hodgkins Lymphoma.

This excerpt is from yesterday, in its entirety...

Happy Thanksgiving

Today, Steve brought home an article from a newspaper about cancer survivors and how it affected their outlook on life. This study showed that most survivors feel that cancer changed their life and in most cases for the better. Most survivors feel stronger, have a new appreciation for life, and are driven to help others with the disease. I found it so interesting because that is how my cancer affected me. Amazing how so much good can come from something so terrible! My wish is that people who know my story and read my journal learn what I have learned from having this disease through my experiences.

When I was first diagnosed, my parent's doctor told them that in a year or two I would forget I ever had cancer. That was a silly thing to say! There is not a day that goes by when I do not think about it. I must admit that on rare occasions it makes me sad to remember all that I have been through. But usually it is with happiness that I remember this experience because of the new life it has given me. And I always look back with thanks for the gift of my life and for everyone who helped me through this time.

I want to wish everyone a Happy Thanksgiving!

New to SharingOurDays -- Nightmare Hall

2006-11-22T05:27:00.000-08:00

Hey Y'all,

This one is different from any blog we've yet posted at SharingOurDays. "The Dreamer" is a long-term HIV survivor and the blog only tangentially (is that a great word or what?) relates to his condition. But he does talk about it on a fairly regular basis. We wanted to include it because The Dreamer really has a lot to say and is a pretty good writer. It brings home the point that we are so much more than just a disease, and yet that colors everything we say and do and feel.

- sean

The is an excerpt from yesterday's entry...

Techno shootout at the mall

Ahhh the retail holiday season has kicked into high gear (Bah humbug!) once againm and according to Gee Dubya Boosh the economy is going gang busters, at least for the rich it is, for the rest of the sheeple it'll be charging the plastic up to the limit once again, "we can't disappoint little Pugsley on Christmas morning."

Every store I've been in is decorated, playing holiday Muzak and has rolled out holiday merchandise for sale. I drove by a local TJ Max and there were signs in the windows advertising "Genuine iPods coming in December, limit 3 per customer." I suppose yuppies give iPods as stocking stuffers, what's a few hundred bucks when stuff like Benz's, Beemers and $20,000 $100,000 home theater systems as main gifts.

New to SharingOurDays -- A Pastor's Cancer Diary

2006-11-21T05:25:00.000-08:00

This is one of my favorite blogs, yet. It is written by cancer survivor Pastor Carl Wilton and overflows with heart, humor, and thoughtfulness. The bottom line is that I just plain like him, and you will, too.

This is a short excerpt from yesterday's entry...

During my chemotherapy, I simply didn’t have time for anger. I had to marshal all my emotional resources in the service of just getting by. The reality is, I’ve probably been stuffing my anger about the cancer for some considerable time. When I received first one clean PET/CT scan report, then another (in late May and early September) that was no time for feeling angry, either. I was supposed to feel relieved (and one part of me did, of course).

So what happens to all that suppressed anger? The answer seems to be that it’s coming out, inappropriately. I find I have a short fuse, these days, for petty frustrations. Other people around me have noticed it, too (in truth, they picked up on it before I did). It’s as though there’s a little voice in my head that keeps whispering, “You shouldn’t have to put up with this nonsense: you have cancer!”

New to SharingOurDays -- My Cancer (Cancer)

2006-11-20T06:42:00.000-08:00

Who knew that NPR has blogs on its site?!? I'm sure lots of folks, and I'm pretty excited to discover it. Leroy Sievers is a beautiful writer who is creating an incredible chronicle of his life with cancer. Man, it is definitely worth our time.

The following excerpt is from November 16...

The Holidays Have Begun

Well, the holidays have clearly begun. Personally, I think it should be a crime to put up Christmas decorations or play Christmas carols until the day after Thanksgiving, but clearly all the retailers feel differently. There was Christmas stuff up before Halloween. That should be a felony.

The holidays are always a time for reflection. Last year at Thanksgiving, I didn't know that there were tumors growing in my body. I was going about my life in blissful ignorance. This year is different in so many ways, some obvious, some not. In many ways, I have a lot more to be thankful for: old friends who have stood by me in the bleakest times and new friends who already feel like old friends. I have learned many lessons and been reminded of things that I knew, but had maybe forgotten. And I have all of you, the family that has grown up around this site.

Of course, there is one sad thought floating over the holidays. I think it's probably in the mind of every cancer patient. Will I be alive for the next Thanksgiving or Christmas or New Year's? Who knows? The sad truth is that some of us probably won't be here next year. That's just the way it goes. But that shouldn't take away from this season.

As I've said before, I've postponed my next chemo until after Thanksgiving, so I expect my body and my appetite to be ready for dinner. That night, am I going to be worried about whether it will be my last Thanksgiving? Nope. And I think I will have that second piece of pie -- and yes, I will have whipped cream on it, too.

New to SharingOurDays -- The Assertive Cancer Patient (Cancer)

2006-11-19T07:55:00.000-08:00

Boy, this is a great one. It is written by Jeanne Sather, a professional writer who has lived through cancer and has a lot to offer anyone living with an ongoing health condition.

Excerpted from the bio on Jeanne's blog...

Jeanne Sather, author of The Assertive Cancer Patient, is an outspoken advocate for the cancer patient’s point of view. She has written about taking part in clinical trials, living with incurable cancer, “pink ribbon” marketing run amok, strategies for getting through cancer treatment, how to help when a friend has cancer, and much more.

Jeanne has also been interviewed by major newspapers on such topics as her firing while in cancer treatment, writing your own obituary, and teaching doctors how to say goodbye to dying patients. Jeanne coined the term “MIA doctors” to refer to doctors, in particular oncologists, who disappear when their patients are dying.

Jeanne began her career as a journalist, working for newspapers, magazines, and wire services, including Newsweek in Tokyo, Reuters in Seattle, MSN (also in Seattle), and a number of other publications.

New to SharingOurDays -- Life Changing Cancer (Cancer)

2006-11-18T08:49:00.000-08:00

The following post was taken from Monday, November 13, 2006. The actual post is longer, and I encourage you to read it. The author, Lynne Dahlborg, is a good, thoughtful writer.

Love, Cancer and Vulnerability

Lately, I've been thinking about the vulnerability of loving a person with cancer. Like many folks who are diagnosed with cancer, after my gallbladder cancer diagnosis I found that some of the folks in my life drew closer, and some pulled away. Those who drew closer have provided amazing emotional, physical, spiritual support for me. And those who have withdrawn are suddenly not in touch and not connected. I don't know whether any of my friends in the second group made a conscious decision to withdraw, or if it just happened somehow. And I don't know how many of my friends in the first group, those who have moved closer to me, have thought about the consequences of their closeness.

In the 1980s, two friends of mine were killed while vacationing in the Caribbean. Murdered on the beach, those of us left behind felt shock and horror at their sudden death. This may sound like an obvious observation, but their deaths brought me the realization that when we love someone, two things can happen. They can leave us, through death or dissolution of the relationship, or we can leave them, through our death or a decision to end the relationship. Those are the options, really. It was the first time I was able to articulate the true vulnerability of loving someone, whether it's a friend, an intimate partner or a family member.

In the past, I have been one who withdrew after a cancer diagnosis. My friend Willa was diagnosed with lung cancer almost three years ago, and soon after, we spent a wonderful afternoon eating and talking and sharing stories. She was determined to fight her cancer, and seemed convinced she would win the fight against the cancer. I left that wonderful day with a strong intuitive sense that she would not survive the cancer, and then I had to decide whether to be with her, loving her, but feeling strongly she would not survive, or whether it was better for me to withdraw. I did withdraw, except through cards and emails and phone calls. I didn't see her again before her death in May of 2005. Given that situation again, with my own experience, I would not withdraw, but I would need to decide how to talk with her about my own feelings about her illness. It's tricky.

New to SharingOurDays -- Parkinson's Straight from the Horse's Mouth

2006-11-17T14:11:00.000-08:00

This blog is from Barbara Waters in New Mexico. She can be angry, funny, vulnerable. Always very real. It is definitely worth a read.

This excerpt is from Saturday, September 30, 2006...

Big Brother Is Watching

The hounds of hell are always snapping at your heels when you have PD. Worst of all are the unceasing side-effects, like the bronchitis I've been battling since my birthday on September 26. My gift was escaping pneumonia this time around. Second worst is constantly being harrassed by the Medical System. My two health aides reported my eating out during Hazel's visit as well as my weekly visits to the beauty parlor. Now I'm being dropped from their Medicare services and coverage. Look, folks! The only Wonder Woman ever to be cured of Parkinson's Disease. She tries to walk. She talks. She thinks. She eats. She has clean hair! Step right up and see her in her cage. Just fifty cents!

New to Sharing Our Days -- Sean's Blog, MS Cycling Saga

2006-11-16T04:38:00.000-08:00

Hey Y'all!

It is a little insane to start two projects so closely together -- SharingOurDays and this other blog. But that's just how it has worked out. For a while now, I've been moving toward making some sort of grand gesture in the name of better living with MS, seeking to provide some inspiration for folks and maybe raising a little money.

First, I thouight about walking from one end of Missouri, where I live, to the other. That idea began to fall away when one of my knees -- both are bad -- started to hurt. Yes, I'm kind of a wuss. However, not one to just throw in the towel, I decided to try biking instead of walking. So far, that is working out pretty well.

Since I had figured the walk would take somewhere between 14 and 21 days, I decided to stick to that timeframe, which means the trip can be a much greater distance. After a good bit of thought, I decided to completely give in to my tendency toward the grand -- my psychologist mother likes to "joke" that I suffer from delusions of grandeur. So I'm going to New York City. Yep, I'm calling it "Missouri to Manahattan for Multiple Sclerosis."

That's right, a fat guy with MS is going to spend the next several months training for a 1500 mile bicycle ride. Hopefully I'll raise some money, all of which will go to the National MS Society. Hopefully I'll actually make it.

Please join me at http://mscyclingsaga.blogspot.com for daily updates and we'll find out together.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
seanspence@earthlink.net

New to SharingOurDays -- The Multiple Sclerosis Companion

2006-11-15T08:30:00.000-08:00

This entry is from November 2, 2006. Check it out...

Post Mortem on a Wedding?

Can we actually say that? How about a "wrap-up?"The wedding weekend is over and I am finally feeling unwell. We knew it was coming. The elation has worn off and the return to the rest of my vacation was a let-down.How can that last sentence make any sense? As a life-long student of language and cultures, it is a very specifically medical phenomenon. A Multiple Sclerosis phenomenon. The stress was masked by the emotional high, but it was there and doing its damage.

Yes, I am serenely happy to have added my daughter's love to our family. PappaDog is a great guy and we feel blessed. But we welcomed him ages ago; he's always been welcome in our home.

Yes, the ceremony and reception went well, exceptionally so. But they cost a fortune (for us and our kids) and now we all must adjust our finances, that were already overloaded, and Christmas is pretty much shot. Money-wise.

Yesterday I began to collect the clues of the cost to my physical and mental health. My out-going emails are getting mixed up, and I am simply not going to answer any for a while. The phone makes me jump, and I can't hear callers when I answer. A small, nagging headache points up the painful electricity at the back of my neck. I am literally dotted with tiny hives from the change in diet and a medicine patch is creating one big red rash.

My immediate boss, the one who writes the comics column, wisely insisted I take a week to prepare and a week to recover from the festivities. But not working makes me anxious. About keeping my job, about paying the bills, about dealing with Husband RJ, because I am underfoot at times I'm usually at work. Even about the blogs and my video games. Geez Louise!

Guess I'll go for a walk and contemplate the season. It's bright and sunny and warm. And I'll occupy my mind with counting blessings. That should tie me up the rest of the day.

See? I'll survive.Just wished I felt well. Not feeling well is leaving me exhausted and weepy, when I should be still celebrating. I want to still be celebrating.

SharingOurDays gets a new URL, keeps old one

2006-11-14T07:33:00.000-08:00

Hey Y'all!

First of all, let me say thanks to everyone who has visited and continues to visit SharingOurDays.com. We've only been up for a few weeks, but we've had new visitors almost every day. It is pretty exciting, to be honest. Running this blog, I get to read some pretty amazing stories, and feel as though I'm getting to know people of every kind, all around the world. Thank you for sharing that experience with me.

Second, I'd like to announce that folks can now find us at www.SharingOurDays.com. The old Blogspot URL still works, too, but now we have an easier way to get here and tell others how to get here.Take care, and please keep sharing your stories.

- sean

Sean Spence

MS Advocate & Founder, SharingOurDays

www.SharingOurDays.com

seanspence@earthlink.net

New to SharingOurDays -- At Least It's a "Good" Cancer (Breast Cancer)

2006-11-13T06:43:00.000-08:00

Lucky

For much of my life, I've been relatively glad that I haven't won (or played) the lottery. That's right. It always seemed to me that I had pretty darned good luck, but in a mild way; and I worried that any exceptional good luck (like a multimillion jackpot) would have to be offset by a commensurately horrible experience.As you can imagine, since March 13, I've been thinking that now is a fine time to start playing the lottery.

My diagnosis was a piece of really crappy luck. And everything that has happened as a consequence is stuff that I would happily forego, if only I didn't have to have this diagnosis. And yet, it turns out that the luck baseline changes once the diagnosis is here. Although it's always sounded ludicrous to me that flood victims, for example, praise God for getting them through the flood alive (I think, shouldn't you be pissed at God for sending you a flood??), now I understand. A horror strikes, and you don't get to use your old frame anymore.

So then, I think, I've been very lucky. I was lucky that the tumor was only half the size that the doctors thought before surgery. I was lucky that there was no spread into my lymph nodes, and no metastasis. I was lucky that my veins held up to the chemo, and I never had to get a port or a pic line. I was lucky that my skin had no problems with the radiation. I was lucky with timing: we delayed the start of chemo until I finished teaching in spring, and I started teaching in fall two weeks after the end of chemo.

So I lost a summer--but I've otherwise been able to stick to the normal seasonal schedule of my life. And I was lucky that it was summer when I had to sit nauseated on the couch, since I was not expected to be anywhere by my job, and could continue getting paid without having to take formal leave--working when I could manage to. Think of the incredible luck, and luxury, of that.And I've been phenomenally lucky--in the sense of "the harder I work, the luckier I get"--because I am well insured and had planned well. Two years ago, we switched insurance plans into the most powerful and flexible PPO that USC offers. This year, I'd put extra money into our medical spending account (thinking we'd get lots of eyeglasses and physical therapy).

Also, though I didn't end up needing it, I signed up for the supplemental disability plan. All of this means that I have had virtually no financial concerns through this whole process. My out of pocket maximum for the year is just $1000, and much of that was covered by the spending account, so we've probably written less that $200 in checks so far. If I needed to go on disability, I would get something close to 6 weeks at full salary, and after that would get over 50% of my salary.

I contrast this with the experience of my aunt, who has had to go through treatment for cancer without private insurance, and who has had to forego certain treatments or certain drugs--or be told that she can't be treated with a new protocol until she gets substantially worse, because that protocol is so expensive that it can be provided for her only if her need is dire. She owes tens, if not hundreds, of thousands of dollars to her oncology hospital, and the only asset she can maintain as a result is her home.

Cancer treatment is brutal and unhappy anyway (even if I sounded chipper). When I hear other people's horror stories about insurance denials, high bills, and struggling to work throughout chemo, I feel astonished and relieved that things have been so "easy" for me. Lucky, lucky.Oh, and last week I had my first three-month check--blood tests and physical exam. I got the all clear until late January. I'm in Philadelphia at a conference, feeling energetic and healthy and fully involved in my life again. Lucky, lucky.

New to SharingOurDays -- Dying Man's Daily Journal (Brain Tumor)

2006-11-12T14:49:00.000-08:00

Hey Y'all,

Dealing with my MS, I don't know how many times I've said "either you laugh or you cry," and I think we all probably feel that way sometimes. I'm moved by this blog and the journal entry below, from November 9, 2006.

- sean

Joking About My Brain Tumor

I made a comment in a posting a while ago about laughing and joking around about my brain tumor. I have had several people ask how can you laugh at a brain tumor. I received a comment for sooty, who I think best summed it up. Sometimes you just have to laugh or you will cry.

Within a 12 month period I had a heart attack (my 4th), followed by a heart procedure in which a stent was placed in my heart. It was discovered I have a brain tumor. It was later discovered the tumor triggered epilepse. I was diagnosed with severe carnal tunnel in both wrists. I was diagnosed with periferal neuropathy. I was diagnosed with diabetes and some where in the middle of that I was diagnosed with the heart failure.

During that same 12 month period, our home was broken into 3 times, we were the victims of a home invasion. For my medical reasons I was forced to leave work, and we relocated to a different city, to be closer to various doctors.

All in all a pretty stressful year. It was originally with my brother Eric that the joking started. He usually picked up from my doctors appointments. It was to the point were it seemed after every appointment I was telling him, I was diagnosed with something new. First question he always asked, when I got into the car was “well what did the doctor have to say”. I need a heart procedure. Next appointment, “well what did the doctor have to say?” Brain tumor and on it went. The joking started with how I was going to have to stop going to see the doctor because every time I did, I had something new. It became almost overwelming and it was laugh or you will cry. Likely at the beginning the joking was a way of dealing with it hiding the nerves the worries. Gradually, it became more relaxed and even fun, all in a very light hearted way.

With the realization of the seriousness of my heart condition all of the other conditions seemed to just drop from sight. My tumor is slow growing and in the short haul will have minimal if any more effect on me. I will be gone before it causes any significant problems so it is like a none issue.

The main joking about the tumor comes from the questions the doctor asked shortly after my diagnosis. Conversation went something like this.

Dr. “Do you have any strong urges to do anything inappropriate”?

Me, “Huh”

Dr. “Do you ever have any urges to do anything such as urinating in public’?

Me, “NO”

Dr. “Do you ever feel the urge to expose yourself in public”?

Me, “NO”

Dr. ” Do you ever have the urge in inapporpriately touch or fondle another woman”?

Me. “NO”………. wait a minute now doc, hmm, when do you think this part might start kicking in. haha.

So I tease and get teased about partiucularly the flashing. You have to know me to really know that is something that just will not ever happen, tumor or no tumor.

A brain tumor is a very serious issue and can be a very frightening issue. I do not want to in any way minimize what others with the same condition are going through. It is just my circumstances are unique and allow for that teasing.
I really enjoy the teasing and joking. So, if you ever see me coming down the street….wearing a trench coat…..close your eyes. haha

New to SharingOurDays -- Living in the Bonus Round

2006-11-10T06:12:00.000-08:00

Welcome to the Bonus Round. My name is Steve. I'm an AIDS survivor and this site is a personal diary. I started it back in the stone age of the Internet. I was really, really sick; stuck in bed. I needed a way to let my friends and family know how I was doing, day by day -- and to record my last thoughts before dying.

GeoCities had just come online giving out free websites. So, I created my site in the form of a diary. And soon, I was getting email from all over the world. I began to see it as a way of saying, "Look. I existed. I was here."

Online diary/blogs are not such an amazing idea these days. But back then, when the Net was new, I was one of the first. Only about 1/3 of a college class even had email. (I know because I asked once when I did a presentation.)

Well, I didn't die. In fact, I wrote a musical instead. And I survive. And people sing my songs. And now we're headed back to New York with another musical.

The diary has evolved a mixture of blog, opinion, diary entries, road trips, and (now) a backstage look at the making of our new off-Broadway musical in New York called "The Big Voice: God or Merman?."

New to SharingOurDays -- Libbi's MS Journey

2006-11-09T12:39:00.000-08:00

Libbi talks about all kinds of things. Entries like the one below remind us of the "little" things with which we must deal when we have ongoing health conditions.

Lazy Leg and other lovely symptoms

I have a lazy leg. Sounds a little strange, I know, but - there ya go. Strangeness is my constant companion, along with fatigue and pain."Lazy leg" refers to one of my least favorite MS symptom - the one that results in my right leg not responding appropriately when I try to do something with it that should be (pardon the pun) a no-brainer. Like, for example, walking. Or lifting my foot to step onto a curb or a stair. Or pulling on the right leg of my jeans or leggings.

This 'lazy' right leg of mine simply won't (or can't) do what it's supposed to do. So when I get dressed in the morning, I have to sit down and pull the leg up so I can put it into the leggings. I have to remember to be very careful when I'm trying to navigate on streets with sidewalks and curbs, because this 'lazy' leg will sometimes fail to raise itself high enough, and my toe will catch on the curb. And I'll lose what minimal balance I still have. And I might well fall.This is the reason I always use a cane when I leave the house; I just can't trust this damned lazy right leg of mine.It happened again this morning, when I was out on the front porch watering the plants.

The leg got a wee bit lazy and I somehow managed to trip on the doormat, and almost fall into the front door. Luckily, I still have relatively active reflexes, so I managed to put out my right hand and hold onto the door jamb (our front door is glass, and I don't want to contemplate the results of my falling into it, headlong) until I could regain my equilibrium.So there are canes stored at both front and back doors, so I won't make the mistake of going out without one.

And you thought it was a drag to remember your keys!

New to SharingOurDays -- NotPerfectAtAll (HIV)

2006-11-07T09:26:00.000-08:00

"NotPerfectAtAll" is written by Dragonette, of the Netherlands, diagnosed in December of 2005 with HIV.

Here is an excerpt from October 28, 2006:
As I write here I find that it is increasingly difficult to limit myself to things that won't reveal my identity. Already if someone I know stumbled across this page and read it carefully they would know who I am. At some point I will have to stop. Maintain my privacy. But not yet. It's a compulsion. It's keeping me afloat. I have taken to writing in Word first and then extracting what I am comfortable with to this webpage, which is not the purpose of this blog for me at all, I mean, to be blunt, it was supposed to be the plastic tub next to the bed I would heave into once in a while. But I can't be too risque (risque! ha ha... I always wanted to use that word, it is a sexy cheesy Danielle Steele/Jackie Collins type of word, like allure, and evokes assosiations of daytime encounters in hotels, sunglasses crossing through the lobby and skincolored stockings and beige raincoats).

New to SharingOurDays -- MozartMovement (Parkinson's)

2006-11-06T10:17:00.000-08:00

http://mozartmovement.blogspot.com/

"MozartMovement" is written by a female Registered Nurse, diagnosed pretty recently with Parkinson's Disease. I like the way she writes. The passage below has a Christian reference or two, but I don't think non-Christian readers will find this pervasive in her journal entries or objectionable in any way. Her entries display a lot of common sense, a good connection with reality, and a poetic soul.

Here's an entry from Thursday, August 31st...

Identity

Today I was reading an article about a Parkinson's Disease treatment, and encountered the unfortunate phrase "(so-and-so) was losing her identity to Parkinson's..." Now, I've only been diagnosed since March, so my perception may be different than that of a long-term PWP (Person With Parkinson's). But regardless if I'm up in the morning and functioning as a nurse, or totally disabled in a nursing home, I will still be me! Granted, my self-image has been remodeled over the past year. Last July, high blood sugar. March, Parkinson's. May, osteoporosis. I'll admit I used to be proud of my high level of wellness, and my characteristic efficiency. Now, I have to carefully consider consumption of carbs. Walks are no longer effortless. I have to make time for tedious resistance exercises. I'm no longer able to quickly accomplish my charting at work or to cheerily pick up for others. I'm grieving the loss of the old me and inserting the new me into projected future scenarios. Truth be told, I needed to be remodeled. Christ requires humility and daily thankfulness. Things aren't perfect? More thankfulness! Some might speculate that we are dealt illnesses according to what we choose or deserve. I wouldn't have thought Parkinson's would be God's customized plan for me, in fact I can think of a lot of reasons why not. But life requires faith, regardless of our wellness level. Maybe this is God's reminder-plan for me.

New to SharingOurDays -- Day by Day with Parkinson's

2006-11-04T07:13:00.000-08:00

With Michael J. Fox so much in the news, we've all been learning more about Parkinson's Disease. Here's a blog I've found by a woman with both Parkinson's and a condition about which I've never heard, Peripheral Neuropathy.

http://peripheralneuropathy.blogspot.com/index.html

- sean

Sean Spence
MS Fighter & Founder, SharingOurDays.com
seanspence@earthlink.net

New to SharingOurDays -- Tim's HIV Blog

2006-11-03T07:39:00.000-08:00

Hey Y'all!

You have to wade through just a bit to get to the heart of "Tim's HIV Blog" (under the new category to the right, "HIV/AIDS Blogs) but the wading is worth it. Tim talks a lot about "thriving with HIV" and this attitude shines through.

Tim has good advice for living long-term with HIV, such as the following passage:

****
For those of us who have become disabled and unable to work a daily job; we must be vigilant and watch the changes in the world today, and when energy costs keep rising, we have to be very proactive to be able to keep our way of life stable and independent if we are going to have any comfort in our private lives in say 10 years from now. For those of you who are still young and able to work; you must also be proactive and spend your money wisely so that you can also be better off in 10 years from now. It is not hopeful that things will get any better in the world, so making the right choices to keep you from becoming helpless is of the utmost importance.
****

Check it out.

- sean

Sean Spence
MS Fighter & Founder, SharingOurDays.com
seanspence@earthlink.net

Launching SharingOurDays.com

2006-11-02T07:26:00.000-08:00

Welcome to SharingOurDays.com -- an online community for those of us living with ongoing health conditions.

If you are like me, and either have an ongoing health condition or love someone who does, then maybe you've found that sharing our stories with others like ourselves can be powerful and life-affirming.

That's the point of SharingOurDays.com. Our goal is to provide a central location for online journals, written by people from around the world, sharing their experiences with ongoing health conditions. Sometimes the content of this site will be sad, other times scary or happy or crazy or just whatever. Every day, right here, we will learn and laugh and cry about life and death and everything in between.

Please join us.

- Sean

Sean Spence
MS Fighter & Founder, SharingOurDays.com
seanspence@earthlink.net