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  #1  
Old Sat Dec 17, 2011, 01:14 AM
Marrowforums Marrowforums is offline
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Join Date: Jul 2006
Posts: 845
Sharing your story on forums and blogs

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The Marrowforums Tell Your Story forum

Many patients want to share their experiences day by day or week by week as they fight for their health. When you write about yourself regularly online it's called blogging.

You can post at Marrowforums, set up your own blog, or do both. Below is information about what's involved, and a comparison of posting at Marrowforums with using a blog.

If you have a blog, please post in this thread and let us know about it!


Using Marrowforums

At Marrowforums you can share your ongoing experiences as a patient by posting in the Tell Your Story forum. Just start your own thread there and keep us up to date on your life. You are welcome to post photos too. For details see How do I post? and Can I put a picture in my post? in the FAQ.

The focus at a forum website like Marrowforums is conversation and interactions among people at the site. You can expect comments, questions, suggestions, and other reactions when you tell your story. A forum site is a good place to make friends with other people in similar circumstances.

Joining Marrowforums is free and Marrowforums is ad-free.

You don't have to set up anything to use Marrowforums, just register. The site is already set up and ready for you!
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  #2  
Old Sat Dec 17, 2011, 01:14 AM
Marrowforums Marrowforums is offline
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Join Date: Jul 2006
Posts: 845
Using a blog

At sites designed for pure blogging (rather than conversation and interaction) you make regular posts, with or without photos, on a dedicated set of web pages. You do most of the talking and your news updates are the primary content. You can think of a blog as a public diary. Other people can usually leave comments or sign a visitors log, but what they write isn't displayed as prominently.

There are many blogging sites that are free to join, but these sites may be supported by advertising that can appear on your blog page. Some sites let you choose your own domain name (e.g., myaplasticstory.com), but you'll have to pay for that.

You have to go through a number of steps to set up a blogging site. You control almost everything about your site, but that takes more work than posting at a forum site.

Don't forget to consider privacy when posting about yourself online. Read the Marrowforums Privacy Policy and the privacy policies of any blogging site you use.


Medical patient blogging sites

Some websites specialize in blogging for medical patients. A number of Marrowforums members have blogs at these two sites:
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Sample blog page at CaringBridge


General Blogging Sites

General blogging sites let you create a blog for almost any purpose, choose from thousands of styles, and choose part of the your blog's address (e.g., mdsbegone.wordpress.com).

Among the well-known blogging sites are
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Sample blog page at Tumblr
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  #3  
Old Sat Dec 17, 2011, 01:15 AM
Marrowforums Marrowforums is offline
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Join Date: Jul 2006
Posts: 845
Letting people know about your Marrowforums thread

If you've posted your story in a thread here at Marrowforums you can give your family or friends a link to your thread.

Here's how to get the address of any thread you have started, so you can send it to people you know:
  1. Select My Profile from the Quick Links menu at the top of any forum page.

  2. Click the Find all threads started by (yourname) link. You'll see a list of threads you have started.

  3. Click the title of your thread.

  4. Copy the address from the address bar, e.g.,
    http://forums.marrowforums.org/showthread.php?t=2245

Letting people know about your blog

If you have your own blog you are welcome to put a link to it here at Marrowforums.

Here are three ways to do so:
  1. Post in this thread and tell us where to find your blog.

  2. Fill in the "Home Page URL" field in your user profile. For example, set your Home Page URL to
    http://www.caringbridge.org/visit/my-name-here
    or
    http://www.carepages.com/carepages/my-name-here
  3. Put a link to your blog in your forum signature. Here is the syntax to use for a link in your signature:
    [url=http://www.caringbridge.org/visit/my-name-here]Visit my blog[/url]
    or
    [url=http://www.carepages.com/carepages/my-name-here]Visit my blog[/url]
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  #4  
Old Sun Dec 18, 2011, 11:48 AM
mausmish mausmish is offline
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Join Date: Mar 2010
Location: Maryland
Posts: 450
Karen's transplant blog

First, I want to thank Neil and Ruth and everyone who participates in Marrowforums for making this such a fantastic site - an invaluable resource for information exchange and moral support. I've been a member here since not long after my MDS diagnosis two years ago. My bone marrow transplant was a year ago. I've blogged about my experience at http://www.mausmarrow.com/.
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #5  
Old Wed Feb 8, 2012, 10:14 AM
MBreuer MBreuer is offline
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Join Date: Feb 2012
Location: Rockville, MD
Posts: 1
Aplastic anemia and MDS Foundation - Would you be interested in sharing your story?

Hi Karen:

I've looked at your blog and you obviously have a lot to say about your MDS experience. Would you be interested in writing a short (300-500 word) story about your experiences for our web site and online publication? If so,
please send me an email at breuer@aamds.org. I can provide you with more details about our "Stories of Hope" if you contact me. Thanks.
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  #6  
Old Wed Feb 29, 2012, 03:36 PM
Thomas H. Purvis Thomas H. Purvis is offline
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Join Date: Feb 2012
Location: Lucedale, MS (USA)
Posts: 2
For the Record

I too am one of those who suffers MDS to the extent of living of "OPB".
(Other Peoples Blood)

Which is of course sufficiently not good!

Especially when added to the is the fact that I also suffer prostrate cancer, which can not be effectively treated with radiation as a result of my lack of production of white blood cells to fight the inherent lack of immunity tat the radiation treatment will create.

As a result of absolute Agent Orange exposure, the VA is of course giving the treatment for these medical conditions. For whatever that may or may not be worth to others who have developed either of these diseases.

Sincerely

Tom Purvis
173rd Airborne Brigade (Vietnam)
1968
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  #7  
Old Thu Sep 6, 2012, 08:22 PM
Tina K. Tina K. is offline
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Join Date: Feb 2012
Location: Oviedo
Posts: 2
Severe Aplastic Anemia and Ashley Jade

Ashley is 14 years old and was diagnosed in November 2011 with SAA. She is very slowly recovering but still needing occasional transfusions. We are unsure if the ATG treatment she received in December will eventually work or if she will need a Bone Marrow Transplant. Anyone looking to read more about her or find more people with SAA please go to her website. Facebook.com/PrayersforAshley

We look forward to seeing anyone who has input or wants to share their experience there
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  #8  
Old Thu Mar 21, 2013, 11:42 PM
capnchris capnchris is offline
Member
 
Join Date: Sep 2011
Location: Beaufort, North Carolina
Posts: 2
Sharing My Story via Blog

I have been encouraged by several friends to record the events of my upcoming Allogenic Stem Cell Transplant by starting a blog. Please feel free to have a look, and if you want to , submit your email address and you will get a short email when I update . You can unsub at any time.

Although most of the subscribers are just my friends who want to know what's up, there are also more than a few Oncologists, FNPs,ANPs, Hemotologists, and several seasoned Nurses ( 20 yrs Exp at Stamford doing BMTs, and 20 yrs at Duke) some friends in the Insurance world, some of the staff at my local hospital and clinic as well as a few from Duke. Now if we could just get some Big Pharma Reps, we could have some lively discussions.

I hope we get a good mix of patients and medicos, and healthy caregivers too, and will be encouraging comments, both from the medicos who I am trusting to correct me if I err in terminology or Docspeak and other brave patients who have been where I am headed and can offer advice.

I invite you to check it out http://capnsmarrowblog.blogspot.com/

Cheers,

Chris Siegel
__________________
Chris 60, dx 9/2011 MDS,(RCMD w 9qdel) 6 cycles Dacogen. Currently on Neupogen and Aranesp 1x wk, ,transfusion dependent, Scheduled for BMT April 2, 2013 at Duke Med , Durham NC. Allogenic, Sister 10/10 match. Whoopee!
Read all about it here http://capnsmarrowblog.blogspot.com/
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  #9  
Old Fri Mar 21, 2014, 11:23 PM
Thomas H. Purvis Thomas H. Purvis is offline
Member
 
Join Date: Feb 2012
Location: Lucedale, MS (USA)
Posts: 2
MDS to AML

Quote:
Originally Posted by Thomas H. Purvis View Post
I too am one of those who suffers MDS to the extent of living of "OPB".
(Other Peoples Blood)

Which is of course sufficiently not good!

Especially when added to the is the fact that I also suffer prostrate cancer, which can not be effectively treated with radiation as a result of my lack of production of white blood cells to fight the inherent lack of immunity tat the radiation treatment will create.

As a result of absolute Agent Orange exposure, the VA is of course giving the treatment for these medical conditions. For whatever that may or may not be worth to others who have developed either of these diseases.

Sincerely

Tom Purvis
173rd Airborne Brigade (Vietnam)
1968

MDS went to AML after 3-years of treatment.

Do not know exactly what w
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