Some Thoughts From a Blog Reporter

By Miriam Lippel Blum

This is my 100th post on DSEN, so I thought I would mark it with some reflections on the blog reports I write.  I work on the report at home, usually when I myself am on hemodialysis.  I use my laptop and type with the one hand not immobile because of needles.  Every three days I enter the worlds of the 114 people whose blogs grace DSEN's master list.   I report on whomever has new posts since the last time I visited and summarize what they have to say. 

It is an emotional journey sometimes, for the entire spectrum of life with CKD is represented here, and often written about with graphic detail and brutal honesty.  There are people with polycystic kidney disease, lupus, FSGS, diabetes, and other chronic conditions.  Every kind of renal replacement therapy is represented: peritoneal dialysis, conventional hemodialysis, home hemodialysis, nocturnal hemodialysis (in both home and in-center settings), and, of course, transplants.

There are people here waiting for transplants, people who are getting transplants, people who are living well with their transplants and people who are losing the precious gift of life they received.  There are caregiving family members here who write about the difficulties and stresses of that role.  There are young people here, single people, married people, married with families, and retirees. All united in that they live every day with the burden and challenge of CKD in their lives.

And sometimes they don’t want to live, or find it extremely difficult to live the life they might have but for CKD5.  Some are in chronic pain, distressed and depressed and their blog is where they cry with their words.   Some people find ways to live and be joyful despite their disease issues, some travel, still others take on the role of coach to help guide fellow sufferers using their own coping mechanisms as examples.

Then there are the renal physicians who blog and graciously share their medical knowledge, questions, and scientific updates. A few industry blogs are on the list giving a view into the business side of dialysis that deeply affects our quality of life.

It’s all here, the varied voices of the renal community, full of hope and despair, dreams and nightmares, triumphs and frustrations. 

I have become rather attached to “my bloggers.”  I find myself cheering at their joys and successes and feeling sad for their losses.  The hardest thing is when someone has no new posts for many months or even years and I wonder if they have died.  I quickly check on those, too, because I never know if this will be the day when they will return.

The blog report is my way to help dialyzors connect with others, and to provide access to information.  I feel I give bloggers access to more readers than they would otherwise have, and what blogger doesn’t want an audience?  Thank you, bloggers, for putting yourselves out there and sharing your thoughts.  I consider it a privilege to enter your worlds and report on them. And thank you, Bill, for letting me contribute in this way.

Comments

[Sidharth Sethi]

Bill, I want to congratulate you on the great effort you are doing to join the whole nephrology community, patients, doctors, parents and more...

I wish you all the best in life

[Linda Gromko, MD]

Miriam - It is a great service that you provide! Thank you for reading, cheering, and caring. You've provided personal comments which have been very useful to me. I appreciate your window on the varied CKD community. This could make an interesting book! Thank you, and take care. Linda (www.LindaGromkoMD.com)

[J. Brin Schulman]

Dear Miriam- Aunt Barb showed me your impressive blog. As a 10 year post living related kidney transplant, I had almost forgotten that I too have ESRD. It has certainly been a meaningful and successful journey subject only to the vicissitudes of time and aging.

I admire and respect your character and courage in all that you do.

I love you lots, Uncle J.

[Kamal Shah]

Dear Miriam - Congratulations on your 100th post at DSEN! I really like your blog reports. It is a great summary of what is happening on the CKD blogs from all over. Keep up the great work and thanks so much for doing this Miriam!

Kamal

[Debala]

Mir, you continue to be a heroine to me! I love ya, Debala

[Paula]

Dear Miriam,

Beautiful thoughts, beautifully written and shared. Poetry and prose at the same time. You are also a heroine to me. I agree with the earlier comment that there is a book in this...Love, Paula

[Kathe LeBeau]

Miriam...

Wonderful post, sensitive and poignant. Our world does run the gamut of highs to lows, and sometimes in the course of a day or an hour. Your following and reporting on all these separate journeys is a great part of DSEN and one I look forward to very much. Congratulations on your 100th post ... well done !!

[DoodlesMom]

Awesome post. My husband just had his transplant surgery last Thursday and after an initial bumpy start, he seems to be doing much better - his creatinine was 312 today (from 1100 a week ago)! It's been a heck of an emotional ride and I've been with him every step of the way - I've seen him afraid for the first time ... ever. I'm so glad to have found your blogsite, because without it we would have had so many questions unanswered. I've followed a few blogsites that are listed here and have asked some of them about their transplants as well. It's a great resource - please keep it up ...

[Beatrice Lippel]

I am astounded by the amount of work you have done this year, "single-handedly" but with the input of so many wonderful bloggers on DSEN. Your work has been a blessing, Miriam, and it makes me treasure even more our Friday night dinners together and our weekly Scrabble game. My heart opens at your knock on my door... Love from your Mom

[roberta mikles]

Miriam.. Your hard work has been such a benefit to DSEN readers and a LARGE 'thank you' is probably not enough. Thank you for sharing as you did and remember that so many value that which you are doing. We all look forward to your read. Best to you always,
Roberta

[John Daley]

Gday Miriam

Moving words from a person uniquely equipped to do this important task.

And not just any old task - your wise words and incisive comments are as helpful to the writers of these blogs as is the resource you create si helpful to this segment of the blogosphere.

I agree about the earlier comment regarding the potential for a book.

More to the point, all who read your work agree that you are doing a fantastic job in this work - and that you are a person highly personally suited to this work through your empathy, sensitivity, and work ethic.

Cheers Miriam! Well done!

John

[Tracy Lynn]

I can't tell you how much I look forward to your blog reports. Well done, you, and thanks.