Where Did This All Come From?

Some people think SlowItDownCKD is a business; it’s not. Some think it’s a profit maker; it’s not. So, what is it you ask? It’s a vehicle for spreading awareness of Chronic Kidney Disease and whatever goes along with the disease. Why do I do it? Because I had no idea what it was, nor how I might have prevented the disease, nor how to deal with it effectively once I was diagnosed.

At that time I was a college instructor. My favorite course to teach was Research Writing. I was also a writer with an Academic Certificate in Creative Non-Fiction and a bunch of publications under my belt. It occurred to me that I couldn’t be the only one who had no clue what this new-to-me disease was and how to handle living with it. I knew how to research and I knew how to write, so why not share what I learned?

I wasn’t sure of what had to be done to share or how to do it. I learned by trial and error. People were so kind in teaching me, pointing out what might work better, even suggesting others that might be interested in what I was doing. I love people.

First came the books. I’d written quite a few how to(s), study guides, articles, and literary guides so the writing was not new to me. I asked for suggestions as to what to do with my writing and that’s when I learned about unscrupulous, price gouging vanity publishers. I’m still paying for that mistake with my first book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, but it was a learning experience.

You already know the blog was born of necessity when an Indian doctor explained to me that he wanted his new patients to read What Is It and How Did I Early It? Early Stage Chronic Kidney Disease, but they couldn’t even afford the bus fare to the clinic. That’s when I got the bright idea of blogging a chapter a week so he could translate and print the blog post, and then the patients that did make it to the clinic could bring the blog back to their villages for others to read.

It would work! But first I had to teach myself how to blog. I made some boo-boos and lost a bunch of blogs until I got it figured out. So why do I keep blogging? There always seems to be more to share about CKD. Each week, I wonder what I’ll write… and the ideas keep coming.

Then my New York daughter, Nima, started teaching me about social media. What???? You could post whatever you wanted to? And Facebook wasn’t the only way to reach the public at large? Hello LinkedIn. A friend who is a professional photographer asked me why I wasn’t using my fun photography habit to promote awareness. What??? You could do that? Hello Instagram. My step-daughters love Pinterest. That got me to thinking…. Then someone I met at a conference casually mentioned she offers Twitter workshops. What kind of workshops? She showed me how to use Twitter to raise CKD awareness.

When I was diagnosed back in 2008, there weren’t that many reader friendly books on anything having to do with CKD. Since then, more and more books on the subject have been published. I’m laughing along with you, but I don’t mean just SlowItDownCKD 2011, SlowItDownCKD 2012 (These two were The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, until I realized how unwieldy both the book and the title were – another learning experience), SlowItDownCKD 2013, SlowItDownCKD 2014 (These two were formerly The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2), SlowItDownCKD 2015, SlowItDownCKD 2016, and SlowItDownCKD 2017. By the way, I’m already working on SlowItDownCKD 2018. Each book contains the blogs for that year. 

Have you read the guest blogs or book review blogs to get a taste of what’s available now? Last week, Suzanne Ruff guest blogged. She wrote The Reluctant Donor, which I just wrote a review for on Amazon. Her guest blog explains what her book is about. Don’t forget Dr. Mandip S. Kang’s book, The Doctor’s Kidney Diets which also contains so much non-dietary information that we as CKD patients need to know. Another very helpful book is Drs. Raymond R. Townsend and Debbie L. Cohen’s 100 Questions & Answers About Kidney Disease and Hypertension. Neuropharmacologist Dr. Walter Hunt wrote Kidney Disease: A Guide for Living. Renal Dietitian Nina Kolbe wrote from her perspective: 10 Step Diet & Lifestyle Plan for Healthier Kidneys. Dr. Mackenzie Walser wrote Coping with Kidney Disease: A 12 – Step Treatment Program to Help You Avoid Dialysis. I also just wrote an Amazon review for Who Lives, Who Dies With Kidney Disease by Drs. Mohammad Akmal and Vasundhara Raghavan.

While I may or may not agree with all or part of the information in these books, they have either been mentioned, reviewed, or guest blogged on SlowItDownCKD because I want you to be aware of whatever help may be available to you.

That, of course, brings us to the Facebook support groups. I miss my New York daughter and she misses me, so we sometimes have coffee together separately. She has a cup of coffee and I do at the same time. It’s not like being together in person, but it’s something. You can find support the same way via Facebook. Since I’m both running out of room and have periodically reviewed these groups, I’m just going to list a few. You can use the search bar at the top of your Facebook page for others.

Kidney Disease, Dialysis, and Transplant

The Transplant Community Outreach

P2P

Kidney Disease Ideas and Diets1

People on Dialysis

Chronic Kidney Disease in India

Friends Sharing Positive Chronic Kidney Disease

Chronic Kidney Disease Awareness

CKD (Kidney Failure) Support Group International

Kidney Warriors Foundation

Kidney Disease is not a Joke

Kidney Disease Diet Ideas and Help

Sharing your Kidney Journey

Mani Trust

Dialysis & Kidney Disease

Kidneys and Vets

Women’s Renal Failure

I Hate Dialysis

Mark’s Private Kidney Disease Group

UK Kidney Support

Wrap Up Warm for Kidney Disease

Stage 3 ‘n 4 Kidneybeaners Gathering Place

 

Until next week,

Keep living your life!

 

 

Facebook and CKD

Victorian clockIt’s been a slow weekend with me really wondering if I were sick or just fatigued.  Fatigued won, so here I am back on track – just a little slower.  I love it when things work out the way I want them to, even if it’s an almost the way I want them to.

I’m lucky.  I have plenty of support here from Bear, the daughters and the almost sons-in-law, and the neighbors.  But many people don’t have others to talk to, much less do for them.  That’s why I’ll be writing about online support groups today.

The blog has a major presence on Facebook.  That started with Aaron Milton’s invitation to join P2P, (Peer To Peer) – Support for The Chronically Ill and Friends & Family several years ago.

This is a closed group of 6,198 members with invitation by email. As with most closed groups, the idea is for the members to be able to freely discuss whatever troubles them.  I’ve also noticed lots of support for other than illness issues here… and loads of sharing happinesses.Book Cover

Although I do not have a transplant, shortly after What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published, Rex and Linda Maus asked me to post this weekly blog on The Transplant Community Outreach’s page under the heading KIDNEY MATTERS.

I remember trying to dissuade them from this idea since I only knew about early stage, but they were adamant… and I’m still posting the blog there. This is a public support page with 5,633 members.  I’ve received a number of comments indicating that all stages of CKD patients are welcome.TCO

Then there’s The Renal Patient Support Group (RPSG) Facebook & BlogSpot, another closed group, with 5,305 members. I find this group extremely interactive concerning rides, requests for new information, and information about local treatment centers that you won’t find elsewhere. Their Shahid Muhammed has added a link to this blog on their page.

people talkingChronic Kidney Disease, End Stage Renal Failure is a smaller (71 members) closed group.  It is quite homey and inviting. When I go there, I feel like I’m visiting my neighbor.  That doesn’t mean it’s not worthwhile, though.  Sometimes you need that homey feel to understand what you’re reading. Betheny Whipple does a fine job of welcoming the members.

Kidney Disease, Diet Ideas, and Help 1 with 7,611 members is another closed group.  You can usually like a closed group to join or inbox the administrator.  This is how they describe the group:

“This is a closed, private group run by genuine Kidney patients for people with Kidney Disease including Dialysis to Transplant also for Carers to be able to offer and receive their support and knowledge in complete privacy from your friends on Facebook, to cover all aspects including discussing openly and sharing ideas on how each of our members is coping , how it affects us in day to day living, medications, side effects also their Diets , Drinks and lifestyle in accordance to our individual requirements and to also share ideas and recipes for CKD.
ALWAYS SEEK MEDICAL ADVICE BEFORE TRYING ANYTHING NEW. “

All the Facebook support groups remind you they are not doctors.  It is important for you to remember that so you check with your nephrologist before trying anything new.  Better safe than sorry.cadesus

Notice, too, that most support groups welcome family, friends, caregivers, and others somehow involved with the kidney disease patient.  The groups usually do not discriminate, but welcome all who are interested.

One of the newer groups is Kris Osborne’s Women’s Renal Failure Support Group, a closed group with 579 members. There is a free give and take about (surprise!) specifically women’s issues.  While I’m post-menopausal myself, I find I especially enjoy the younger women’s baby-shots-5posts about whether and if they can become pregnant, the hints and advice they give each other, and their generous support along this difficult journey for CKD sufferers. (Must be the wanna-grandmother in me rooting them along.)

Larry W. Green’s People of Color Renal, Kidney, Dialysis, and Transplant Support  is not restricted to people of color, although there are many posts that deal specifically with this group of particularly at risk for CKD people. It is a closed group with 207 members.  I think he nails the problem with reaching minorities in his description:1399816_10151944012192488_153026929_o

“People of Color Renal, Kidney, Dialysis and Transplant Support Group is for sharing information on people who are close to renal failure, dialysis or on dialysis or who have had a kidney transplant in the hopes of educating and offering support. Renal failure is the most prevalent among the minority communities but they are the least informed with options of dealing with this epidemic. This group is just not for minorities only but for all concerned with End Stage Renal Disease.”

By the way, the key word in all these support groups is ‘sharing.’

There are many other groups I post in because I feel they are so worthwhile in their efforts to educate CKD sufferers by sharing information AND by allowing them to vent, question, rant, and – of course – providing an opportunity for their members to support each other.sad face

Some of the others are: GM Kidney Information Network, Kidney/Renal Failure Support Group Durban, Kidney disease isn’t for sissies, Kidney Disease is Not a Joke Group, Kidney Disease in Saudi Arabia, Kidneys-R-Us (Not an organ selling site.  This is illegal in the U.S.), World Kidney Network, UK Kidney Support, National Kidney Foundation, Canadian Kidney Connection, and The Bhutan Kidney Foundation.

I know I’ve left out some really good support sites, but I’ll plead lack of space.  Some of the foreign sites are excellent and it’s fun to see how they deal with CKD differently than we do in the U.S.  Well, maybe my sense of fun is different from yours, but I enjoy it.

I haven’t included any addresses because all you need to do is go to Facebook, and cut and paste the group name in the search bar.  Ready, set, go!

Wait! I do want to end on a personal note of congratulations.  Friday night was the August birthday dinner for my sweet husband – Bear, my youngest daughter – Abby, and our wonderful almost son-in-law, Sean.  There were three different kinds of goodies, including ice cream cupcakes, a confetti cake (that I baked) and a Black Forest Cake.  Guess who didn’t have any of these.firworks

Until next week,

Keep living your life!