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May 25th, 2007


maguire708
02:11 pm - Tysabri and Breastfeeding?????
Depending on my next MRI I may be starting Tysabri next month for my MS. I am breastfeeding my 2 month old and haven't been pumping since I never even considered this an option until now (I am starting to pump after vacation next week so I don't have to deal with overproducing or pumping on our trip, but I doubt I'll get more than a few weeks at most)... Tysabri is so new I don't think there are any studies on it regarding breast milk, but just in case I'm asking in my MS and Breastfeeding communities... ANY info is helpful!

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June 12th, 2006


maguire708
12:44 pm - Less than a month left to buy discount tickets!
The Third Annual Team Wench MS Fantasy Ball will be held on July 15, 2006 at 8:00 PM at Michael's 8th Avenue in Glen Burnie, MD.

This year the Ball takes us into An Arabian Night where a seat at the sultan's table has been reserved just for you! TICKETS are available for $50 each and group tables of 10 for $450 are also still available... but remember they are only available at these prices for a limited time so be sure to claim your place soon!

We are pleased to announce that in addition to 40 Thieves and Darcy Nair, the Desert Dreams Belly Dance Troupe is on the roster for the night's entertainment!

Our wonderful photographer Tony K. will be returning to preserve your memories. A fortune teller will be available to glimpse your future and Bindi and Mehndi artists will be on hand to enhance your costumes.

The raffle is better than ever with: cloaks courtesy of Half Moon; jewelry from R.E. Piland, Nagle Forge, Illusion Jewels, and Sapphire & Sage; 90 Minutes of Massage from Amanda Costales; costume items from Tall Toad, A Very Merry Seamstress, and Costumes in Time; and of course many more prizes waiting to be won!

While the raffle tickets, photos, and other special purchases are cash-only on the night of the Ball, this year, for the first time, raffle tickets may be purchased in advance!

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March 9th, 2006


maguire708
01:03 am - MS, breastfeeding, and donating my body (or bodily fluids) to science
Dr. Thomas Hale is going to use MY MILK in a study of the drug Avonex! I registered at http://neonatal.ttuhsc.edu/lact/ 4 years ago and again about 2 years ago and I fit an upcoming study! If you're on Avonex and breastfeeding please go register... he may need more volunteers!

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June 17th, 2005


maguire708
04:25 pm - 2 weeks until our MS Fundraiser!!
More about it at http://www.livejournal.com/users/maguire708/84453.html

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May 28th, 2005


maguire708
12:03 pm - Whew!
The OLD STYLE Avonex was GREAT last night... NO side effects! I quit taking the new style because of extreme side effects (literally couldn't roll over in bed about 3 hours after getting the shotand took about 12 hours for me to get moving) and I'm extremely relieved to know that I can go back to getting treatment!
I reported my experiences to the FDA via the Avonex 1-800 number... nobody knows why there's a difference, but I was gratified to learn I am not the only one to report increased side effects from the premix.

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May 27th, 2005


maguire708
08:54 am
Today's project is working on writing my MS story... I've written it before, but it's been several years and as I approach my 12th diagnosis anniversary next week, I figure I should contemplate the changes in the disease (in my body and in general), the changes in treatment (when I was dx'ed there were NO medications for MS, just meds for symptom management), and the changes in my life... I think this is going to be a slow process...

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April 14th, 2005


maguire708
11:03 am - Less than 24 hours to go...
And less than $200 to go!
When I cross that $1,000 line I'll be dying my hair VIOLET for the MS Walk in Annapolis on Sunday. If I cross the $1,500 line the hair goes rainbow-wild. Hopefully the hair can be a conversation starter and raise awareness wherever I go for a while.

This disease is multifaceted, that's why the ribbon of hope for MS is glittery silver and reflects all colors.
No two people experience it the same wayCollapse )
Current Mood: melancholymelancholy

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April 5th, 2005


maguire708
01:40 pm - well over 1/2 way but I guess I'm keeping the hair!
Thanks so much to you all who played along yesterday!
I have over $500 in donations (online and checks) and met my initial goal even if I didn't make the $1,000 in 24 hours challenge I set up. I guess I'll keep my hair (though I might dye is some crazy color for the walk!) I truly appreciate all of your love and support. I know I made the fundraising fun and silly yesterday, but you all know how incredibly serious this topic is to me. I can't find the words to express how your generosity has touched my life and how much knowing you are there puts a positive light on things even when I'm feeling run down.
Thank you thank you thank you!
julie

p.s. If you were afraid I'd make my goal and shave my head the deadline has passed... for that one... the deadline has NOT passed for donaing though! https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=72557&lis=1&kntae72557=7D6D0F8E87DE42E08FEAB5B180434792&supId=14657510 is the link to donate or email me is you want to send a check!

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April 4th, 2005


maguire708
07:47 pm - Update...
Still about 1/2 way to the $1,000 goal... my stepdad says I should up the ante with a tattoo on my bare scalp... but I'm not agreeing to that... yet...

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maguire708
10:44 am - Less than 14 hours to go...
I'm up to 9 pledges... I hope to top $1,000 in pledges today (bringing the total up to 1105.00 from yesterday's base) with 100 pledges.
https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=72557&lis=0&kntae72557=875FB69202814F3595F2FF95058B504F&supId=14657510
Don't forget... I'll take it all off on April 17 at the Annapolis MS Walk... with your support!!

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