I Hate Dialysis Message Board

Dialysis Discussion => Life NOT on the list => Topic started by: kitkatz on October 24, 2017, 08:02:32 PM

Title: Blog "Life Not on the List"
Post by: kitkatz on October 24, 2017, 08:02:32 PM
I am thinking I will start a blog called: "Life Not on the List".     It would be my thoughts, ideas, questions and life about and around my life on dialysis.

Maybe a new Facebook page.

Title: Re: Blog "Life Not on the List"
Post by: iolaire on October 25, 2017, 06:54:19 AM
I like blogs, Facebook makes it so hard to find older content and is not indexed via the search engines.  If you want to still have Facebook from your blog you an use one of many WordPress plugins to post your blog posts to Facebook.  Even Jetpack that is created by Automatic the main maintainers of WordPress and operators of Wordpress.com (free blogs) provides the Facebook posting functionality.

For example I subscribed to the IHateDialysis facebook group for a few days but quickly removed it form my feed because there is no organization.  I'm sure the same questions get answered time and time again without people reading the old content like they might here.  Its impossible to link to previous posts on facebook using the mobile app, and often impossible to even find older content...
Title: Re: Blog "Life Not on the List"
Post by: MooseMom on October 25, 2017, 08:16:27 AM
That's a great idea, kitkatz.  I know I'd read it.  Do you think you'll really do it?  I hope so!
Title: Re: Blog "Life Not on the List"
Post by: Rerun on October 25, 2017, 10:15:23 AM
Sounds good!

  :cuddle;
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on October 29, 2017, 07:16:30 PM
My blog will be called Lifenotonthelist.com.  Give me a few days to get it all set up and then I will post a link so you all can see my musings.
Title: Re: Blog "Life Not on the List"
Post by: Michelle2016 on October 30, 2017, 12:05:06 AM
Recently I read one article about artificial kidney. They will start clinical trials at the beginning of 2018. Iím very excited about it.

I never imagined we can have the cellphone we  are having today. Itís magic. 

I think ithe new ArtificialKidney will change many peopleís life. Especially people  can swim with it. It can keep eGFR up to 20-25. Itís amazing.



Title: Re: Blog "Life Not on the List"
Post by: Simon Dog on October 30, 2017, 06:51:29 PM
http://lifenotonthelist.com is up waiting for KitKatz to do her thing.
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on October 30, 2017, 11:37:42 PM
I am reading wordpress info as fast as I can so I can start this blog.

Help me out with topics or ideas to write about or discuss.

I plan to spend at least one day a week putting new content into the blog.
Title: Re: Blog "Life Not on the List"
Post by: iolaire on October 31, 2017, 06:14:48 AM
I am reading wordpress info as fast as I can so I can start this blog.

Feel free to reach out to me if you have questions. I've ran various WordPress sites since b2/cafelog was forked to Wordpress in 2003.
Title: Re: Blog "Life Not on the List"
Post by: smartcookie on October 31, 2017, 06:59:14 AM
Topics I would like to hear about:

Knowing dialysis is really the only option.
Dealing with good and bad dialysis days.
Learning how to deal with the renal diet.
Creative comebacks for people who ask why you can't get a transplant.

You rock, Kitkat!!  I can't wait to read your blog.
Title: Re: Blog "Life Not on the List"
Post by: kickingandscreaming on October 31, 2017, 08:14:17 AM
I'm a professional WordPress designer, so I know a lot about working with WordPress.  Ask me anything.  I don't know which theme you have chosen, but not all themes are created equal.  Some are poorly coded. Some are ugly.  Some  are beautiful but poorly coded.  And much of the difference between a pro and not-pro managed site is the difference in SEO (search engine optimization) which influences how well your site will be found by search engines.  That may not be important to you, but if it is, it behooves you to learn the best ways to publish your content.  There are "tricks" to the trade.
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on October 31, 2017, 09:00:30 AM
I did my first blog today. www.lifenotonthelist.com
Title: Re: Blog "Life Not on the List"
Post by: MooseMom on October 31, 2017, 09:21:14 AM
Fantastic!  I've just subscribed to your feed, I think!  I've never subscribed to a feed before, so let's see how it goes.  Is there a way to create a password so that we can log in and leave comments?  I think I'm missing something here

Edited to add:  It has just occurred to me that you might not welcome comments but would rather keep your blog as a vehicle for venting!  Whatever the case, I really look forward to reading it as I know it will help a lot of people.  Well done!
Title: Re: Blog "Life Not on the List"
Post by: SooMK on October 31, 2017, 11:20:49 AM
Very professional looking. I look forward to reading it.
Title: Re: Blog "Life Not on the List"
Post by: Xplantdad on October 31, 2017, 11:26:20 AM
Very nice KitKatz!  :thumbup;
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on October 31, 2017, 12:48:38 PM
MooseMom I love conversation and would welcome comments on the blog.
Title: Re: Blog "Life Not on the List"
Post by: MooseMom on October 31, 2017, 01:07:59 PM
How do I create a user name and password?  When I click onto log in, there doesn't seem to be an option to create them.  Could you help me? 
Title: Re: Blog "Life Not on the List"
Post by: kickingandscreaming on October 31, 2017, 04:59:19 PM
Quote
How do I create a user name and password?  When I click onto log in, there doesn't seem to be an option to create them.  Could you help me? 

It's easy.  At the bottom of each full blog post (not the blog excerpt page) there is a comment section.  You just make up a username (whatever... something you will remember) and password (something that no one is
likely to guess.  And then write your comment.  That should do it.

If you do a search of "password generator" you will find lots of sites with tools to help you generate a good, strong password.  Here's one: https://www.random.org/passwords/?num=5&len=8&format=html&rnd=new

Good luck!
Title: Re: Blog "Life Not on the List"
Post by: iolaire on October 31, 2017, 07:03:27 PM
Quote
How do I create a user name and password?  When I click onto log in, there doesn't seem to be an option to create them.  Could you help me? 

It's easy.  At the bottom of each full blog post (not the blog excerpt page) there is a comment section.  You just make up a username (whatever... something you will remember) and password (something that no one is
likely to guess.  And then write your comment.  That should do it.

To do that click on the title of a post to go to the full post page rather than the home page of the blog. Ie http://lifenotonthelist.com/?p=27 and you will see the comments area, there you just need to enter your name and email to comment, no password needed.
Title: Re: Blog "Life Not on the List"
Post by: MooseMom on October 31, 2017, 10:08:00 PM
Thanks, Iolaire and k&s.  Just so that I don't look like a complete idiot, I assure you that the comment section WAS NOT THERE when I first looked at the blog.  I've commented on blogs before!  But to be fair, it's entirely possible that I looked at the blog just seconds before the comment section was included.
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on November 02, 2017, 03:52:31 PM
You might have caught me in the middle of posting something,too, MooseMom.  I am trying to post things.  I have a lot of stuff I have already written I want to post, but do not want to overdose the blog. 
Title: Re: Blog "Life Not on the List"
Post by: iolaire on November 02, 2017, 08:34:04 PM
Kitkatz do you know you can publish your posts with a future date/time so they are released when that time arrives?  So if you want you could set up the posts in advance.
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on November 08, 2017, 10:51:57 PM
That sounds cool. I will have to figure that out.  Meantime I scrawl my wanderings into word and cut and paste into the blog.
Title: Re: Blog "Life Not on the List"
Post by: PrimeTimer on December 19, 2017, 10:43:35 PM
We'll need to figure out how to do a conga line here on the site for your 3000 treatment in January.  :bandance; :bandance; :bandance;

In the meantime, have yourself a Merry Little Christmas! :santahat; :snowman; :christmastree; :rudolph;
Title: Re: Blog "Life Not on the List"
Post by: MooseMom on December 20, 2017, 08:53:38 AM
What a great idea, PrimeTimer!
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on January 02, 2018, 10:03:27 PM
I have updated my birthday posts on my blog today.  I will be doing the OKC trip soon on it, too.
Title: Re: Blog "Life Not on the List"
Post by: PrimeTimer on January 03, 2018, 10:13:18 PM
 :birthday; Happy Birthday! Celebrating for a WHOLE month?!! Everybody should! I don't know what butt cards are, I can only imagine   :sir ken;     ...great, now I can't get that image out of my head! My brother and I use to send each other "dumb cat cards" but your butt cards sound funnier.


Title: Re: Blog "Life Not on the List"
Post by: kitkatz on February 11, 2018, 04:09:49 PM
New post on my blog www.lifenotonthelist.com
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on February 15, 2018, 12:41:17 PM
New posts up on the blog. 
Title: Re: Blog "Life Not on the List"
Post by: MooseMom on February 16, 2018, 08:29:13 AM
Thanks for telling us all about the reunion last year.  It was fun to read!
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on August 19, 2018, 02:49:32 PM
New posts on the blog folks.
Title: Re: Blog "Life Not on the List"
Post by: Simon Dog on August 19, 2018, 08:25:26 PM
Very interesting post, sounds like quite an adventure.

Sorry to hear about the 15 uses when 16s prescribed.   I've learned you have to check the Rx you are given, and watch the machine for high pressures, errors, etc.  I lost a blood setup because I relied on the tech to monitor the arterial chamber; blood got too low in it; air got in the lines; and I lost a setup worth of blood.   I've prevented that same mistake from happening on 2 subsequent occasions.
Title: Re: Blog "Life Not on the List"
Post by: MooseMom on August 21, 2018, 01:02:23 PM
New posts on the blog folks.

I'm exhausted just reading that.  You all have been busy!
Title: Re: Blog "Life Not on the List"
Post by: iolaire on August 21, 2018, 01:10:31 PM
I hope you are enjoying the updated house. 

Also thanks for providing the complaint letter, short and to the point...  its a good example as people often go so far off track in complaints with unimportant or even unrelated content.
Title: Re: Blog "Life Not on the List"
Post by: Simon Dog on August 21, 2018, 02:16:00 PM
Nice complaint letter.  I like the part about "propose a solution".

I only filed one once.  I used a 180 filter (106kg edw), and a clinic in TX had (emphasis, had) a policy of "160s only for visiting patients".    The final outcome was termination of that policy.

I pointed out that using a smaller filter on me was no different than me leaving early AMA, and that they work to educate patients to make them understand the later is a bad idea.
Title: Re: Blog "Life Not on the List"
Post by: Whamo on November 07, 2018, 11:54:54 AM
I got kicked off the transplant list because of skin cancer.  I have a nasty tumor.  They're talking surgery for 10-12 hours that might kill me.  I'm using cannabis oil on it instead.  It seems to be helping.  I'm going to get a stronger strain from my pot head step son.  He knows more about it. Anyone with any experience with cancer and dialysis please share your experience with me.
Title: Re: Blog "Life Not on the List"
Post by: kristina on November 08, 2018, 04:13:23 AM
I got kicked off the transplant list because of skin cancer.  I have a nasty tumor.  They're talking surgery for 10-12 hours that might kill me. 

Hello Whamo,
I want to send you my best wishes for your treatment and hopefully your doctors find the best way forward for you. These days doctors can often help with radiotherapy, chemotherapy and some other newly developed treatments and hopefully there is a positive way forward for you & to get back on the kidney-transplant-waiting-list takes just about five years.
I wish you lots of strengths and all the best wishes from Kristina. :grouphug;
P.S. Cancer treatments are no longer as crude and hopeless as they were in the past and many methods of treatments have become very "refined" and don't look any longer as hopeless as they were in the past. Good luck !
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on January 19, 2019, 07:33:36 PM
I have been a wild woman posting things on my blog. www.lifenotonthelist.com
Title: Re: Blog "Life Not on the List"
Post by: MooseMom on January 20, 2019, 02:21:15 PM
I do so enjoy your blog!   :2thumbsup;
Title: Re: Blog "Life Not on the List"
Post by: PrimeTimer on January 30, 2019, 10:44:50 PM
I enjoy reading it too. Hope my comments were attached to the thread over there. I'm still learning...
Title: Re: Blog "Life Not on the List"
Post by: Simon Dog on January 31, 2019, 06:57:04 AM
20 years ... wow!!
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on February 16, 2019, 08:42:55 PM
I have posted some of my short fiction writing practices as I work on my writing skills.
I am currently teaching my self how to write fiction properly.
I am using the diy/MFA book for a start.
I am also taking Udemy writing courses as I can afford them.
I study and then I practice writing.
I have a long story I am into writing now also.  Over 6,ooo word written.
I am taking that story slowly into creation.

Title: Re: Blog "Life Not on the List"
Post by: kitkatz on February 28, 2019, 10:18:51 PM
New dialysis articles are up on my blog:  lifenotonthelist.com.
I have also updated my writing  course I have been doing this year. 
I have posted a few fiction short stories.
Come on over and hang out.
See my artwork. 
See life being lived as a permanent dialysis patient.
Twenty years strong.

Title: Re: Blog "Life Not on the List"
Post by: PrimeTimer on March 05, 2019, 10:03:18 PM
It's a nice easy-going blog. I like it.  :bump;
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on March 05, 2019, 10:45:15 PM
Thanks Primetimer.  I am doing March Kidney Month Now on the blog.
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on March 28, 2019, 03:47:43 PM
http://lifenotonthelist.com/dialysis-fatigue-march-national-kidney-month/
A new post on the blog today!

I write about dialysis fatigue.
Title: Re: Blog "Life Not on the List"
Post by: PrimeTimer on March 28, 2019, 08:48:22 PM
No doubt your article about dialysis fatigue will help anyone experiencing fatigue from anything and not just dialysis. I'll be sure to take notes.
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on April 07, 2019, 08:32:11 PM
I started a closed Facebook Groupo called lifenotonthelist.com https://www.facebook.com/groups/495826724155937
It goes with my blog lifenotonthelist.com.    It is for Permanent Dialysis Patients and their care givers, plus anyone who is on the transplant evaluation list and wants to talk about it.
Title: Re: Blog "Life Not on the List"
Post by: superrick on April 29, 2019, 04:53:29 AM
I have been told by my unit in Southend on sea, Essex, England, that I dont qualify for transplant because I have to have a black dona such as myself only.
I cant believe that is true as my black buddy had his white wife donate a kidney to him 10 years ago in same hospital and he is fine.
Isn't this grounds for discrimination law suit?? I am currently not being put on the list due to this.....
Title: Re: Blog "Life Not on the List"
Post by: iolaire on April 29, 2019, 05:52:54 AM
Here in the US Iíve read that African Americans have longer waits as there are less donors that are similar to them so there may be some sort of matching or antibodies unique to each race?

But I donít know why they would no list you and let you wait for a compatible kidney?
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on April 30, 2019, 10:28:40 PM
https://chronicdiseasecoalition.org/patient-advocate-spotlight-katherine-soto/

I was interviewed for the Chronic Disease Newsletter
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on June 22, 2019, 09:02:26 PM
My new article on my blog.  http://lifenotonthelist.com/ten-things-to-do-while-on-dialysis/
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on July 31, 2019, 11:39:46 PM
I posted an update on my life and times at lifenotonthelist.com.
Title: Re: Blog "Life Not on the List"
Post by: PrimeTimer on August 02, 2019, 11:44:14 PM
I posted an update on my life and times at lifenotonthelist.com.

Thanks for sharing, kitkatz. Always enjoy your blog. Love your art! 
Title: Re: Blog "Life Not on the List"
Post by: Jean on August 04, 2019, 01:24:39 AM
Kit, your blog is just amazing.
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on August 08, 2019, 04:00:44 PM
Thank you Jean.  I do work on making things interesting.
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on October 24, 2019, 03:35:07 PM
A new post.  This one is on happiness and how to put it in your life.

http://lifenotonthelist.com/putting-happiness-into-your-life/      :flower; :bandance; :flower;
Title: Re: Blog "Life Not on the List"
Post by: kitkatz on October 31, 2019, 10:50:46 PM
http://lifenotonthelist.com/renee-fisher-and-co-interview/  Blog stuff is new
Title: Re: Blog "Life Not on the List"
Post by: PrimeTimer on November 01, 2019, 12:39:13 PM
As a kid my family lived next to a lady who had a large flower garden. She use to cut bouquets and bring them over to my mother. Since my mother grew flowers of her own she asked our neighbor why she was bringing her flowers. Our neighbor simply replied that if you want your garden to grow then you have to share it. Hmm. She may have been right about that. My mother's garden was beautiful...and so was our friendship with the neighbors.   

Thank you for sharing your blog and interview with us, kitkatz!