Tuesday, March 11, 2008

Liver - Shliver!

Thanks to all that commented on my last post. I have thought a lot about what the value of Tysabri is for me. With PML as the only possible side effect, it's a little funny that the choice would be easier: if I die, then too bad, if not, I'll have the best medicine around. On the other hand, liver trouble is somewhat more like the thing I'm trying to avoid: a slow decline in health. It's less decisive, less appealing somehow than a quick clean solution like PML or no MS. On the other hand, liver damage is a pretty common side effect. I don't consider liver damage when I take tylenol. When I consider the alternative, MS symptoms that I KNOW happen, I can clearly see the quality of life difference. On the whole, I am pretty sure that Tysabri is the best solution for me. Thanks for everyone's comments and concern.

Saturday, March 8, 2008

7th Infusion

Last friday I had my 7th infusion of Tysabri. My neurologist called to tell me that there was some evidence that Tysabri caused some liver problems and so a liver test will now accompany my infusion each month. It seems there is never a treatment that doesn't have side effects. It makes the choice of what to take difficult. It probably seems funny that someone who already decided to take the risk of PML would be more worried about the liver problems but I never really considered PML a possibility I don't think. I have found that I'm quite a bit less tired these days. If Tysabri can stop the progression of MS and give me back some of the energy I need in my daily life, does that make it worth ruining my liver slowly? I'm not sure.

Carnival of MS Bloggers

MS Awareness, Blogging Friends, and a little Link Love

There are at least 137 MS Bloggers out there actively discussing whatever suits their fancy. Below you will find many of these suspects....wait... I mean lovely blogger friends who happen to have multiple sclerosis.

Remember how I mentioned a group project was in the works? Well here it is. As the founder of the Carnival of MS Bloggers, I'd like your help in spreading the word, and in doing so we will strengthen the bonds of our own little Multiple Sclerosis Blogging Web (and share some linkie love with each other). If you are not an MS Blogger, but are a regular reader here, please feel free to help spread the word too.

Here's what you do:

  1. Copy the entirety of this post
  2. Create a new post and paste this content
  3. Visit 3 of the blogs listed below which you were unfamiliar
  4. Leave a comment on their blog encouraging them to participate
  5. Please add Brass and Ivory to your sidebar, if it's not already
New editions of the Carnival of MS Bloggers will be presented bi-weekly at Brass and Ivory. Previous editions will be are archived here and the button below has been revised to include the new link. Please update your sidebar.

Names of the Blogs - Name of Blogger (if known)
and # of posts in 2008 (as of 3/5)

9 Brand New MS Bloggers joined the blogosphere in 2008!!

New! Carole's MS Blog (Carole) 49
New! Great Mastications (Orla) 37
New! Movin' On with MS (Sammie) 26
New! Me, Myself and MS (Emma) 10
New! Being Ammey 8
New! Blogbuster (Daniel) 6
New! Etsy Crest (Shelby) 6
New! Serina's Blog 5
New! I'm Beating MS (Michael) 2

Most Prolific MS Blogger - so far in 2008!!

Jim's Deep Thoughts (Jim) 231

Top 10 Rather Prolific MS Bloggers - so far in 2008!!

A Stellarlife (Diane) 109
Merely Me's Multiple Synchronicities (& Sclerosis) 90
Friday's Child 70
My Journey - Living Well with MS (Diana) 69
Sunshine and Moonlight (Kim) 65
The MonSter Ate My Branes! (Natalie) 65
Queen Mediocretia of Suburbia 60
Brass and Ivory (Lisa) 56
Brain Cheese (Linda) 52
Maybe I'm Just Lazy (Julie) 51

28 Moderately Prolific MS Bloggers - so far in 2008!!

Maggsbunny (Maggie) 48
Living with Multiple Sclerosis (TC) 47
MS My Way (Callie) 43
Bugs, Bikes, Brains (Shauna) 39
Dancing with MS (Lazscott) 37
Trying to Catch My Breath 37
A Florida Journal (SwampAngel) 35
Now We Are Six (Tish) 33
Reality Check (Michael) 32
Access Denied (Herrad) 31
Multiple Sclerosis Blog (Charles of MSBpodcast.com) 30
MS Activist (NMSS) 29
Self-injecting Chinese Hamsters since 2007 27
Shirl's the Girl (Shirley) 27
Disabled Not Dead (Anne) 26
Life with MS (Trevis) 26
Living with MS (Blinders Off) 25
White Lightning Axiom - Redux (mdm) 25
Stevers! 23
Word Salads (Have Myelin?) 23
Danieldoo (Vivian) 22
Caregivingly Yours (Patrick) 20
Deo Volente (Lisa N) 20
Down the MS Path (Vicki) 19
Do You Have That in My Size? (Denise) 17
Jenn's Nook (Jenn) 17
Fingolimod and Me (Jeri) 16
Human Life Matters (Mark) 16

51 Mildly Prolific MS Bloggers - so far in 2008!!

A Life of Learning with MS 15
Behind Blue Eyes (Zee) 15
Katy and Mike's Adventure (Katy) 15
Living Life as a Snowflake (Sharon) 15
Mandatory Rest Period (Kim) 15
MS Maze (Mandy) 15
My Journey with MS (Christina) 15
The Multiple Sclerosis Companion (Pat) 15
'Tis Herself (Kell) 15
A Short in the Cord (Joan) 14
Blindbeard's MS Blog 14
Bubbie's Blog (Cathy) 14
One Crazy Chick (Chris) 14
Pat's Pond (Pat) 14
Rants and Musings (Cutter) 14
G and K's Mom 13
MS Toolkit 13
Newly Diagnosed with MS (Andrea) 13
One Life (Stephen) 13
MS Not Just a Diary (Doug) 12
Rayne's World (Jayme) 12
Chaos Personified 11
My MS Journal (Jaime) 11
Purely Patsy (14 yr old Patsy) 11
Victoria Plum - Technician! (Victoria) 11

26 Less Prolific MS Bloggers - so far in 2008!!

Broken Clay (Katja) 10
Mark Pickup (Mark) 10
My Chain Driven Ride through Life in Alaska (Michelle) 10
Deborah Does Navel-Gazing (Deb) 9
Funky Mango's Musings 9
Inside the Mind of a Squirrel 9
Living Well with MS (Michon) 9
No Time for MS (Courtney) 9
Sorting It All Out (Michael) 9
Travels With Lucy (Virginia) 9
MS Caregivers (Prudence) 8
Can You Hear Me Now? (Donna) 7
Irreverence is Justified 7
Multiple Sclerosis Notes 7
My Tysabri Diary (Lauren) 7
Chris Has MS (Chris) 6
Diary of MS X (7 Divas) 5
Electrical Disturbance (Stephan) 5
Know Multiple Sclerosis 5
MS in the OC (Frank) 5
MS News and Notes (Deb) 5
MS Recovery Diet Blog (Ann) 5
The Endomorph (Ruth) 5
The Jaws of My Life (Jaws) 5
Time to Deal with MS (Homer) 5
YodaMamma MS & More 5

38 Barely Prolific MS Bloggers - so far in 2008!!

Some of these folks have multiple blogs or co-blog and are loved none-the-less!! Let's help spread the love and let them know that WE know they are appreciated.

Carolyne's MS Odyssey (Carolyne) 4
Defeating Illness (Chris) 4
Intent, Context, Perception (Chris) 4
Libbi's MS Journey (Libbi) 4
MS Recovery Diet Blog (Judi) 4
My Autoimmune Life 4
The Life & Times of Sancho Knotwise (JM) 4
The Zen Pretzel Trick (Zen Angel) 4
When it's Raining... (Keeley) 4
Kebenaran - The Truth 3
Montana Homecoming (Sister Jane) 3
Ms Quill 3
Reality Chick (Keli) 3
Catch My Disease (Lisle) 2
Clods and Pebbles 2
Dissonance 2
Georgia MS Advocates 2
Lazy Dog Public House 2
Looking Forward with MS (Pamela) 2
Surviving MS in Alaska (Michelle) 2
These Pretzels Are Making Me Thirsty (Trrish) 2
Troy's Multiple Sclerosis Experience 2
You Me and MS (Judi) 2
Camille's MSadventures 1
Comment Column (Virginia) 1
Erik's MS & Lyme Blog 1
Hop Bloody Hop (Philip) 1
Jenn's Journey with MS (Jenn) 1
Living with MS (Cyndee) 1
Mismorphic's World of MS 1
MS Musings 1
MS Real Life Stories & Issues (Kristin) 1
Postcards of My Life (Sherry) 1
Rebooting Times 1
Shoester (Doug) 1
The BS of My MS (Heather) 1
The Perseverant Pincushion (Trish) 1
Tysabri Help (Deej) 1

Having too many items from various posters to count:

LJ Users with Multiple Sclerosis

And finally - 26 MS Bloggers who have been silent in 2008!!

Angst on a Shoestring (Gina)
Dandelion Wine (Lynx)
Doug's MS Journal (Doug)
Imagine Bliss Butterfly (Suzy)
It's Not All in My Head (Optimist)
Just Above the Abyss (Heidi)
Life with MS , seeking a cure (Karyl)
Managing MS with Tai Chi (Joel)
Managing Multiple Sclerosis
Michele's Blog
Mike's Place
MS - My Scene (Virginia)
My Complications (Amanda)
My Demyelination (Tina)
My MS Experience
Object of My Injection (Michelle)
Say It Isn't So (Mouse)
Talk Story with Kimberly
The Great NetXperiment
To Be Continued... (Jaime)
Truth and Beauty (Baraka)
Tryin' to Imagine Bliss (Suzy)
What is MS to Me (Dave)
Willy's MS Rants
Wind Among the Reeds

Hard to categorize:

I Have MS (Tim)
Huggins' MS Pages (James)
MS - A Personal Account
MS Protocols (Jeff)
MSB's Podcast
MSing Around
Multiple Sclerosis Blog and News
Multiple Sclerosis Sucks
OUCH! It's a Disability Thing
Squiffy's House of Fun

Thank you for helping to build a stronger MS Community.