rarelydefined.blogspot.com

Rarely Defined

The truth is rarely pure and never simple" (Oscar Wilde). - This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder. Friday, August 7, 2015. Pre-op Appt, Med appeals. Well what a day? Ironically my secondary insurer also denied the med "b/c you need to have tried other things first", lol? Wait to change to new heart drug until after surgery - eit...

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The truth is rarely pure and never simple (Oscar Wilde). - This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder. Friday, August 7, 2015. Pre-op Appt, Med appeals. Well what a day? Ironically my secondary insurer also denied the med b/c you need to have tried other things first, lol? Wait to change to new heart drug until after surgery - eit...

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Rarely Defined | rarelydefined.blogspot.com Reviews

https://rarelydefined.blogspot.com

The truth is rarely pure and never simple" (Oscar Wilde). - This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder. Friday, August 7, 2015. Pre-op Appt, Med appeals. Well what a day? Ironically my secondary insurer also denied the med "b/c you need to have tried other things first", lol? Wait to change to new heart drug until after surgery - eit...

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rarelydefined.blogspot.com

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Rarely Defined: November 2014

http://rarelydefined.blogspot.com/2014_11_01_archive.html

The truth is rarely pure and never simple" (Oscar Wilde). - This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder. Wednesday, November 26, 2014. VP Shunt surgery (revision, #32 or 3).Discharged. Surgery which was delayed from Thurs to Fri due to to high of an INR was post-poned to Fri morning but finally occured! Non-the-less I am just extremel...

2

Rarely Defined: February 2015

http://rarelydefined.blogspot.com/2015_02_01_archive.html

The truth is rarely pure and never simple" (Oscar Wilde). - This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder. Friday, February 27, 2015. Living in the Light. 'Patients as Partners', Febr 28th, Rare Disease Day. I am pleased to introduce 'Living in the Light'. Usually (though not always) disagreement just means a lack of experience with wha...

3

Rarely Defined: June 2015

http://rarelydefined.blogspot.com/2015_06_01_archive.html

The truth is rarely pure and never simple" (Oscar Wilde). - This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder. Monday, June 29, 2015. Uncertainty re Shunt plan, EP (Heart) Study details (scheduled Weds, July 1st). Anna just asked that I call her back either later this afternoon or Weds (I was at ERT till 6 and kind of got distracted doing p...

4

Rarely Defined: July 2014

http://rarelydefined.blogspot.com/2014_07_01_archive.html

The truth is rarely pure and never simple" (Oscar Wilde). - This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder. Thursday, July 31, 2014. Neurosurgery post-surgery Appt. Looking at IT/Dr.Dickson, talking to Plastic Surgery/UW. To be honest I am continually (but so grateful) amazed! DrBragg is going to talk to Dr.Dickson (Patti replied alm...

5

Rarely Defined: January 2015

http://rarelydefined.blogspot.com/2015_01_01_archive.html

The truth is rarely pure and never simple" (Oscar Wilde). - This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder. Monday, January 26, 2015. Frustratingly grateful, grateful for Providers who don't give up. It's one of those things where usually I can hear her drawing off CSF (sort of a mild gurgly or suctioning sound) but couldnt this time, pe...

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crazyheartmama.com

I Hate Piñatas | Crazy Heart Mama

https://crazyheartmama.com/2015/02/03/i-hate-pinatas

Living Life. One Heartbeat at a Time. This entry was posted on February 3, 2015 and tagged #CHDAwareness. Books about congenital heart defects. Congenital heart defects awareness week. I’m so excited to share with you guys that my book is finally out today! There are a few different ways you can help make this book launch a success. 1 Buy the book. It’s officially out today in paperback and e-book on Amazon.com and you can order your copy here. You don’t have to write a lot, but just a few words to...

running4rare.org

Phil’s Friend | Running for Rare Diseases

http://running4rare.org/2015/04/30/phils-friend

Darr; Skip to Main Content. Runners and RARE Community Partners. 2016 Runners and RARE community partners. 2015 Runners and RARE Community Partners. 2014 Runners and RARE Community Partners. 2013 Runners and RARE Community Partners. April 30, 2015. 12 Comments ↓. Garrett was playing catch with his old brother in our living room last Tuesday (an activity he thoroughly enjoys.) He fell awkwardly and ended up with a spiral fracture of his right femur. Garrett is now in a cast that covers most of his...As a ...

savingcase.com

Standing up for “invisible” illnesses - Saving Case & Friends

http://savingcase.com/index.php/2012/08/20/standing-up-for-invisible-illnesses

Join the Hunter Syndrome Research Coalition. Join the Hunter Syndrome Research Coalition. Standing up for “invisible” illnesses. Standing up for “invisible” illnesses. Posted Monday August 20, 2012 by Melissa. Can you pick out everyone with a disability? What does a disability look like? Case looks and acts so “normal” sometimes that I have to fight for his needs in the face of assumptions that he can act, walk, talk, and behave like a typical child. How did you react? I was clearly annoyed. On that same...

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Monday, August 24, 2009. If your close friend come up to you and ask you. (with a cheeky face.). What will you replied? I was happily talking and laughing with the others and suddenly come this question. V stands for wat? Me hahahahahah with the others. and noticed the question asked.). huh. V stands for wat? A man happened to walked behind me heard it. and all my friends burst out laughing! Subscribe to: Posts (Atom). Cater your BBQ food here! View my complete profile.

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rarelydefined.blogspot.com

Rarely Defined

The truth is rarely pure and never simple" (Oscar Wilde). - This blog reflects my personal life with but not defined by MPS I- reflecting the peaks and valleys of this dx., and my life despite a rare disease while rarely falling within the standard definition of this disorder. Friday, August 7, 2015. Pre-op Appt, Med appeals. Well what a day? Ironically my secondary insurer also denied the med "b/c you need to have tried other things first", lol? Wait to change to new heart drug until after surgery - eit...

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rarely dressed

Height='96px; ' id='Header1 headerimg' src='http:/ 4.bp.blogspot.com/-6woeiMquFBI/T4cYT9ODm4I/AAAAAAAAABM/YlL9AJTOyBk/s1600/rarelydressed.jpg' style='display: block' width='512px; '/. Monday, August 5, 2013. Romper Wet Seal Purse Wet Seal Sandals Paul Gurung Target. Dino tee Urban Outfitters Cargo Pants Charlotte Russe Sandals Zara. We wanted to share with you guys some pics we took earlier this summer! Hope everyone had a great monday! Sunday, June 2, 2013. Street style is a trend I am loving more and m...

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Rarely Dusty Books

Thursday, April 3, 2014. Motorcycle club crack: Cole by Megan O'Brien. Lately I have this new guilty pleasure: reading MC biker romance stories. It started with watching Sons of Anarchy. Of course, followed by reading some Kristen Ashley novels and from there on I lost control. I’ve now read quite a few different stories and bought even more. My latest read in this genre is Cole. By Megan O’Brien. It’s one that is far less gritty and much tamer than most of the MC stories so far. Tuesday, March 18, 2014.

rarelydustybooks.com

Rarely Dusty Books

Thursday, April 3, 2014. Motorcycle club crack: Cole by Megan O'Brien. Lately I have this new guilty pleasure: reading MC biker romance stories. It started with watching Sons of Anarchy. Of course, followed by reading some Kristen Ashley novels and from there on I lost control. I’ve now read quite a few different stories and bought even more. My latest read in this genre is Cole. By Megan O’Brien. It’s one that is far less gritty and much tamer than most of the MC stories so far. Tuesday, March 18, 2014.