Grand Rounds Vol. 5 No. 17 Will Be Hosted Here on January 13

Long time reader and admirer of Grand Rounds (a weekly rotating collection of the best posts from the health care blogosphere). First time host.

I am delighted to have this blog be home base for the upcoming January 13 Grand Rounds. I hope I am overwhelmed with your wonderful and eclectic submissions.

I'd like to offer as a suggested - but optional - theme the topic of: Connections.

I often blog about the connection between two partners and how that connection affects the experience of illness and how illness affects that relationship.

Connections can be between people, groups, ideas, opinions, facts, devices, places, events, etc. The connection can be positive or negative, predictable or surprising. The connection can involve you directly, or you may be a witness. I am interested in your stories, experiences, and thoughts about how the connection between things led (or could lead) to an outcome that was in some way beyond what could have happened had those things remained apart.

You are also welcome to submit a post on any other topic that's of interest to you.

Please send your submission by Sunday, January 11, 2:00pm EST. You can email it to: bkivowitz at gmail dot com

Please use the following format in your email:

Subject Line: Grand Rounds Submission

E-mail Body:

1. Post title
2. Post url
3. Short description of the post
4. Blog title
5. Blog url
   

I look forward to reading all of your submissions. Thank you.

Making Pain Go Away

Here's a word I never used in the before time -- titration. I knew its meaning, but it had no function in my pre-illness life. I didn't titrate how many eggs to put in a cheese omlette or how many gallons of gas I needed to make the drive from San Francisco to Mt. View. I just broke eggs and filled the tank.

For the past three weeks my attention has been riveted on titration. Determining how much to go up on which meds at what time intervals to get my pain back in control has been my mission. In the ole days, my mission might have included helping others. But pain makes its own decisions, and I become its loyal soldier. I follow where it leads, head down, tail tucked.

So I make an adjustment to the medication regimen and like a hawk scanning for prey, I scrutinize the meridians of my body for any evidence that this new combination of meds is reducing the ripples of pain. The outside world ceases to exist.

My pain specialist does guide me. But she also reminds me that pain is individual, and I just have to keep titrating until the cocktail works.

There's that word again. Titration. It has come to have a mythic quality about it.

I just want a recipe.

Richard, my voice of reason, reminds me that I will keep trying and I will get better - in a few days, maybe weeks - but not years, not like before. I try to hear him, but often I just can't. Pain is louder.

But I keep titrating. Two pills twice a day. Then three pills two times a day. Scan for a reduction in pain blips. No. OK then. Three pills three times a day. That's my limit. Not because I get impaired by side effects. Luckliy, I have none. But more meds than that and I cross some arbitrary line that exists only in my mind. The too-many-pills line.

Pain and I eventually come to an agreement. This level of medication for my life back.

I take the deal. Gratefully

December Pain Carnival

is up at How to Cope With Pain.

Happy New Year

I wish you all a new year filled with health, love, and peace.

When Pain Returns

These have been rough times. For the past six weeks, I've been feeling ripples of the old pain coming back. They usually slide around at a level 3 or 4, which means I can still follow a conversation and drive by myself. On some days they crescendo to a 7 or 8, which means I lay very still and try to make myself as small as possible, as if by doing so I can corral the pain into a narrower orbit.

Each day I wake up with the fervent belief that today will be the turning point. By late afternoon, I'm looking at my array of medications and debating whether I should take them in order of potency or just chug them down like a drunk doing shots. Pain will do that to you.

Richard so easily slips back into sage caretaker mode. We have been on this ride so many times that he automatically knows how to balance intrusion and distance. He also know how to ask to be invited to enter my orbit of pain, rather than clumsily assault me with volleys of helpfulness.

He will say, "Can I sit with you now or do you want to be alone?" "Do you want my help to problem solve about medication or do you want me to stay out of it?" "How do you want me to tell you if I think you are making a mistake?" And most of all, "How can I help you, my love?"

His presence, his questions anchor me to possibility, to choices that point to a realm beyond the pain. He can't actively stop me, but his steadfastness deters me from plunging into the vortex, which is always a pain spike away.

These have been rough times. But at least I am measuring this experience by time and not by eternity. I do now know that I will be helped, and I will, thankfully, find the next path out of pain.

An Unexpected Conversation in a Waiting Room: The Hope Pyramid

I wrote this post earlier but wanted to repost it as a New Year's offering to all of you. To those of you who have been struggling; to those of you who have had some of your dreams come true; and to those of you who feel like you're still in the dark tunnel. This is a message of hope that was given to me unexpectedly, when I really needed it. I wish you a new year filled with health and peace.
Barbara

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The second pain management clinic I went to, in June 2000, in one of the major Boston, Harvard-affiliated teaching hospitals, was overcrowded and dingy. The tired olive walls of the waiting area made the orange plastic chairs that circled the room all the more jarring. The thick haze of pain coming from the crowd of patients made it hard to breathe. Everywhere I tried to rest my eyes I saw clenched jaws and jiggling feet and silent tears. My chronic pain was at a high point, and I was at a low point in my search for relief. I stopped my own jiggling and clenching for a moment and noticed that the woman sitting next to me seemed unusually serene. Her hands were resting quietly in her lap and her eyes were focused on some invisible point beyond the agitation around her.

To both our surprise, I turned to her and said, “You seem to have a calmness that doesn’t come from overmedication. How do you do it?” To my surprise, she answered, “I always have hope.” She chuckled and added, “I also have chronic back pain and quite possibly a brain tumor.” I asked her to tell me where she finds her hope. I really wanted to know because I had yet again been disappointed by all the treatment options I could fathom to address my mysterious chronic pain condition and was dipping into the muck at the bottom of the depression barrel.

She said that there is always something to be hopeful about, no matter what condition you’re in. When you have health, you can be hopeful about having any of your dreams come true. Once your body fails you, you can rest your hope in your emotions. You can hope that you will still feel love and compassion for others, and for yourself. If your emotions become emptied, you still have your spirit, and you can hope to connect to something greater than yourself, something that has a light to shine on your shadows. And when the spirit is gone, then you have already become something else, and who knows what hopes await you there.

We had this conversation over seven years ago. I never knew what happened to that woman in the waiting room, but I can still hear the assurance in her voice. I still have ups and downs with my pain condition, but I have learned that there is always something to be hopeful about -- you just have to keep looking.

I am honored to have been nominated for the 2008 Medical Weblog Award in two categories -- Best Literary Medical Blog and Best Patient Blog.

The finalists will be announced on January 5. Then from January 6 - 12, readers can vote.