I don't write an official "journal." Rather, I write chapters - currently, I am working on a book with the working title: "From Complications to Grace: A Family Doctor's Journey." This will be the "rest of the story." My first book, "Complications: A Doctor's Love Story,":chronicled Steve's first year of End Stage Renal Disease, discussed Home Dialysis in some detail, and basically told the story of finding an atypical love in midlife.
Another great tool for journaling is, of course, blogging. This very simple accessible tool allows us to chronicle our own lives - and to be diligent at the discipline of regular writing. (Try your own at http://www.blogger.com/.)
Why should we journal anyway?
In my experience, journaling - by whatever techique you happen to like - is inexpensive therapy. It collects our thoughts, allows us to ventilate, and most importantly, allows us to keep track of what we've gone through. It facilitates enormous catharsis.
My favorite journaling outcome is that I can say, " I may be stressed or struggling right now, but look what I've made it through! This is a relatively easier time. I can certainly make it through this."
Simply put, journaling reminds us that we are stronger than we might believe at any given moment.
Look for "From Complications to Grace: A Family Doctor's Journey" sometime this winter. It won't be boring. And I'm open to any modifications of my working title. I remember that Steve's preferred title for the first book was "Steve Williams is Sexually Gifted."
Journaling keeps our humor accessible, even when we are grieving.
Take care,
Linda Gromko, MD
Linda Gromko, MD is a family physician whose husband, Steve Williams, received five Home Hemodialysis treatments per week beginning in 1/08. He switched to Home Peritoneal Dialysis in 1/11. Sadly, Steve died in April 2011 - one week after a leg amputation. Dr. Gromko's blog explores issues of treating Renal Failure at home, making the treatments more user-friendly, and supporting the all-important caregiver in the family on Home Dialysis.
Sunday, August 28, 2011
Saturday, August 13, 2011
How Could a Caregiver Miss Dialysis?
My husband Steve will have been gone, i.e. dead, for four months as of today. I have slept, almost uninterrupted, for that entire time - not waking up to reposition him through the night.
He wasn't a "typical" dialysis patient, if such exists. He had "Critical Illness Myopathy," and therefore, had limited movement. He was wheelchair-bound. He couldn't move himself to a sitting position or turn over by himself. All activities of daily living required assistance.
Home hemodialysis gave way to home peritoneal dialysis when blood access points became unavailabe. Finally, after a leg amputation, Steve's body just gave out.
My life has been full of changes - the greatest, of course, is that I miss Steve. I'm very busy: with my medical practice, with rowing, with writing. And most of the time, I get by with just managing the busy-ness. It isn't avoidant; I feel more normal when I'm occupied.
I remember when a friend's husband was very ill and transitioned to in-Center dialysis, she commented that she missed doing home dialysis.
I "got it" then, of course. She probably missed the closeness of the required attention, and sensed the foreboding of the change.
I miss the ritualistic closeness - the time Steve and I spent together in this chosen path. We knew it beat the alternatives hands down: the alternatives being death or in-Center dialysis.
I miss the movies we watched during dialysis, the ever-present cooking shows (even when Steve's sense of taste was altered and his appetite was so limited), the political prorams, and our favorites "Dexter" and "The Deadliest Catch."
I miss the fact that I could do something for him - and with him - that made the nightmare of renal failure more tolerable. Mostly, of course, I just miss him.
Steve's birthday comes up on August 16, just days away. Each anniversary, each special day, brings new rememberences. I'm not sure what I'll do on that day - but I'm sure I won't let it just sneak up on me and blindside me the way the Fourth of July did.
Joni Mitchell's song lamented, "Don't it always seem to go, that you don't know what you've got til it's gone?" Well, I knew what I had - then and now - a good man, a soulmate, a partner.
Take care,
Linda Gromko, MD
He wasn't a "typical" dialysis patient, if such exists. He had "Critical Illness Myopathy," and therefore, had limited movement. He was wheelchair-bound. He couldn't move himself to a sitting position or turn over by himself. All activities of daily living required assistance.
Home hemodialysis gave way to home peritoneal dialysis when blood access points became unavailabe. Finally, after a leg amputation, Steve's body just gave out.
My life has been full of changes - the greatest, of course, is that I miss Steve. I'm very busy: with my medical practice, with rowing, with writing. And most of the time, I get by with just managing the busy-ness. It isn't avoidant; I feel more normal when I'm occupied.
I remember when a friend's husband was very ill and transitioned to in-Center dialysis, she commented that she missed doing home dialysis.
I "got it" then, of course. She probably missed the closeness of the required attention, and sensed the foreboding of the change.
I miss the ritualistic closeness - the time Steve and I spent together in this chosen path. We knew it beat the alternatives hands down: the alternatives being death or in-Center dialysis.
I miss the movies we watched during dialysis, the ever-present cooking shows (even when Steve's sense of taste was altered and his appetite was so limited), the political prorams, and our favorites "Dexter" and "The Deadliest Catch."
I miss the fact that I could do something for him - and with him - that made the nightmare of renal failure more tolerable. Mostly, of course, I just miss him.
Steve's birthday comes up on August 16, just days away. Each anniversary, each special day, brings new rememberences. I'm not sure what I'll do on that day - but I'm sure I won't let it just sneak up on me and blindside me the way the Fourth of July did.
Joni Mitchell's song lamented, "Don't it always seem to go, that you don't know what you've got til it's gone?" Well, I knew what I had - then and now - a good man, a soulmate, a partner.
Take care,
Linda Gromko, MD
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