Electronically Speaking

Happy New Year to each and every one of you.  It gives me great pleasure to start the first blog of 2016 with good news: Suzanne Kelly has won a DIGITAL_BOOK_THUMBNAILcopy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 by being the first reader to comment on the last blog of 2015. Suzanne, please email me at SlowItDownCKD@gmail.com with either your address or that of the friends you thought would benefit from having this book… and thank you for the opportunity to start off the New Year with good news.

I’ve been looking at quite a few CKD pages on Facebook and was, once again, reminded how quickly things change. Only one of the three pages I listed in 2011’s What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is still in existence.  That’s The Transplant Community Outreach with 5,897 members which is “… an online support group of individuals and families who are recipients, are waiting for a transplant, are donor family members, caregivers, or those who have a connection with organ What is itdonation and transplantation.” I like that they’ve asked me to post this blog weekly, although it is about moderate stage chronic kidney disease.

I offered another list of such pages in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 which was published only last year.

  • Kidney Disease and Diet Ideas and Help 1
  • Show Your Scars Tour
  • Kidney Disease Is Not a Joke
  • The Transplant Community Outreach {I write Kidney Matters for them at their request.}
  • Renal Patient Support Group
  • Chronic Kidney Disease
  • P2P {Peer To Peer}
  • But You Don’t Look Sick
  • TCO Women’s Health
  • Kidney Disease Shout BoardDigital Cover Part 2 redone - Copy

To the best of my knowledge, Show Your Scars Tour, Chronic Kidney Disease, and TCO Women’s Health are no longer with us. But, there are loads of additional pages for us, including some secret groups that I don’t think I’m at liberty to write about. Comment if you’d like to know more about secret groups and I will gladly contact the administrator of the appropriate one for you. Some of the other pages I read are:

  • Kidney Advocates which is a brand new page administrated by the ever striving advocate, James Myers. This man has invited me to post the blog on every page he’s involved with.  If it’s possible, he may be more serious about advocacy than I am.
  • Kidney Disease Ideas and Diet 1 (not to be confused with Kidney Disease and Diet Ideas and Help 1) whose former administrator has become an online friend since we share so many of the same issues in our personal lives. The purpose of this page is simple: “…Sometimes in Unhealthy%20Kidneylife we need a little hand up. Battling kidney disease and getting new dietary instruction can be hard. Every stage is different. We are here to help.”
  • Stage 3 ‘n 4 CKD Kidneybeaners Gathering Place, a smaller, highly active group moderated by my favorite weisenheimer, Robin Rose, who – as a lay person – has an incredible understanding of medicalese. As she writes, “Stage 3 ‘n 4 CKD is a unique place to live – predialysis medicine isn’t that available… so we gather together to share, to support, to learn, to research, and to thrive together… speak your story, your experience, your feelings, your research… let’s commit to staying healthy together!”
  • Women’s Renal Failure Support Group which is fast becoming a favorite since I can be a bit of a prude, but this is women only (as they have to keep reminding men who try to post on the page).

These are some I’m active on are (in alphabetical order):

British Kidney Patient AssociationGFR

Chronic Kidney Disease Support Group

Dialysis & Kidney Disease

GM Kidney Information Network

I Hate Dialysis

kidneys5Kidney disease isn’t for sissies

Kidney Disease, Dialysis, and Transplant

MANI TRUST

People on dialysis

Renal Patient Support Group

There’s even a page for the buying and selling of Chronic Disease paraphernalia which is called, appropriately enough, P2P’s Chronic Illness Awareness Buy & Sell and administered by Sandie Jones who is also the administrator of Peer to Peer (P2P). That’s no surprise, but it is innovative.

And last, but not least, we have (ahem) SlowItDownCKD where I post Chronic Kidney Disease related medical tidbits that I’ve found by perusing different medical sites, Twitter, Instagram, Pinterest, newspapers, medical journals, even medical texts. I am limited as to what I post since I’ve made it a firm policy to post only what I understand. Whoops, there go the CKD diet cookbooks right out the window.kidney-book-cover

These posts also appear on Twitter as @SlowItDownCKD. I have found some really CKD informative people or organizations to follow there. My all-time favorite is @kidney_boy, nephrologist Joel Topf, who answers my questions and includes me in as much nephrology work as he can considering I’m a layman. Lay woman?

Same for @nephondemand (Dr. Tejas Desai) who also answers whatever I ask. I also follow nurses, doctors, teaching institutions, renal dieticians, anyone who is some way connected to CKD.

I am surprised every time a doctor, nurse, teaching institution, or renal dietician follows me. I make it very clear that I am NOT a doctor, just a layman (Oh, here we go again: lay woman?) who has Chronic Kidney Disease and wants to make certain everyone, everywhere in the whole wide world, is aware of its existence so they’ll get tested.

happy birthdayAh ha! You are hereby notified that I intend to give presents on my birthday, which is February 2. No, it’s not my 70th yet; that’s next year.  I just like to give presents.  Keep an eye on the Facebook page P2P’s Chronic Illness Awareness Buy & Sell for details as they’re released.

Here’s hoping 2016 is, indeed, Sweet 16 for you. There’s nothing wrong with making each new year the best year you’ve had yet.  Gratitude and service are the way to go in my book (Yep, I’m punning.)fireworks

Until next week,

Keep living your life!

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