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.
Recent Comments
includes TV's best portrayal of dialyzor
includes TV's best portrayal of dialyzor
Saying Goodbye to Headaches