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.

What do you do when your partner is not taking care of his or her health?

What do you do when your partner is not taking care of his or her health...at least not in a way that is up to your standards?

If I have a new symptom -- an ear ache, a twisted ankle, a mysterious rash - I will at least call my health care team to describe what's going on and ask for advice. I do know a lot about my own body, and about basic care for basic conditions -- but even so, I will seek medical opinions and consider them as additional data to be factored into my decision about how to take care of myself.

Richard is different. He likes to wait to see if the symptom will go away by itself, or if it will shape itself into some pattern that he can describe. He will consult a doctor when he believes his situation is serious enough. But that moment comes way too late by my measure. Although, I do have to admit that he is pretty healthy, and there have only been a couple of times when his delay had potentially harmful consequences.

This is a real source of tension for us. We have not figured out how to resolve it. I certainly can't make him do it my way, but neither can I sit quietly and watch him injure himself though inaction (imho).

Have you had a similar struggle? How do you handle this situation?

Grand Rounds is Up at A Chronic Dose

Check it out. Laurie from A Chronic Dose asked folks to submit their best post of the year. Check it out

And the November Pain Carnival is also up - the theme is Thankfulness.

Genetic Screening and Love

Would you want to know the genetic profile of the person you're falling in love with? Would you want to know before making a forever commitment if your partner to be had the genes for sickle cell anemia or cystic fibrosis? Would you want to be in the position of knowing the potentially defective genes you're carrying and having to decide whether to tell the person you're dating? Well genetic screenings are going on. Would you want one?

This is from The Daily Princetonian:

"What if the internet matchmaker eharmony.com required a blood test? Or if first dates ended with a thumb pricks instead of a kisses and classified ads included family medical histories? While none of these things have happened as far as I know, increasing emphasis has been placed on a new factor in determining compatibility of couples: genetics.

Earlier this semester the Center for Jewish Life (CJL) hosted a genetic screening. The Human Genetics Program at NYU Langone Medical Center contacted members of the CJL and worked to provide the University community with genetic carrier testing. Participants will soon find out if they are carriers for 16 different diseases.

The NYU Genetics Program website promises that screenings, which are done with a blood sample, will "identify changes in a person's chromosomes" and "ensure that your children will not suffer from these diseases." The information could impact who you date and how, if at all, you conceive a child."

Grand Rounds is Up

at Sharp Brains. Check it out.

Invisible Illness: A Two-Way Street for Couples

Fibromyalgia, chronic fatigue syndrome, Complex Regional Pain Syndrome (CRPS), Reflex Sympathetic Dystrophy (RSD), endometriosis, lupus, chronic pain and on and on and on. These invisible illnesses (real illness in a body that looks ok from the outside) force the sufferer to carry an extra burden. In addition to the pain, fatigue, fever, and fear of the illness, these sufferers must continually face insinuations that they are not really sick but just stressed or tired, or even lazy and self-serving.

For couples invisible illness can become a two-way street.

Ruth and Ben

Ruth had always been gutsy. That was one of the qualities Ben loved most about her. She kayaked level four rivers, para-sailed over Ocean Beach, and could hold the revolved half moon yoga pose for as long as she liked. She wore her physicality as if it were a costume that proclaimed her warrior role in the world.

After Ben and Ruth had been married for two years, Ruth started to feel exhausted after walking the dog. Taking out the garbage left her arms aching for hours. Sometimes Ben would come up behind her and knead her neck and shoulders. Lately, if he touched the wrong spot, she yelped -- as if he had poked her with a hot needle. And even though she was sleeping more than usual, she sometimes felt as if the air itself were draining her of all energy and will. After many visits to specialists, Ruth was given the diagnosis of fibromyalgia.

Ben was sympathetic, for three months. He bought Ruth fragrance free bath oils and organic chicken soup. He walked the dog. He sat next to Ruth and massaged her fingers, which were a pain-free zone. And he stayed inside with her, in her new world, a world that had previously known no boundaries and was now tightly circumscribed by pain and exhaustion.

After three months, Ben got restless. He paced the floor as if looking for the path that would lead them back to their old life, the one that should never have been interrupted by this misfortune. His impatience grew with such force that it soon became the lens through which he viewed Ruth. When he tilted the lens in a more benevolent angle, he would say, "You seem more energetic today. Maybe this thing is finally turning around." On more testy days he might say, "Maybe if you did more, you'd feel better." Through any angle of the lens, he was seeing what she was or what he wanted her to be, not what she had become.

Ruth grew more introspective as she struggled to treat herself with compassion and to accept that fibromyalgia was a condition to live with and not an event to medicate. Ben grew agitated and pinwheeled desperately from possibility to hope to disappointment.

Ben couldn't bear to see Ruth's infirmities, and Ruth couldn't tolerate Ben's insistence on activity and optimism. It wasn't only that Ben, finding Ruth physically unaltered, found it hard to assimilate illness into his estimation of her. It was also that Ruth, in working to accept and accommodate to her new limitations, could not abide Ben's buoyancy, nor could she see the fear and sorrow that were underneath it.

They were becoming invisible to each other. This is the toll that invisible illness takes on couples.

The partners' trajectory, once so unequivocal and entwined gets split. Illness inserts itself into some very tender places in the relationship -- into the image partners have of each other, into the activities and routines the relationship depends on, into the kitchen and into the bedroom. Illness gets to make decisions that once belonged to the couple. Illness casts its broad shadow, and the partners are left to try to find each other in the ebbing light. And if the illness itself is an invisible one, its ability to distort the relationship dynamics is even more insidious.

What can a couple in this situation do?

To do nothing will lead to greater invisibility and distance. As with many couple situations the key is hard core, no holds barred, honest communication. The couple needs to develop a new language that incorporates illness rather than avoids it.

Ruth needs to be able to explain to Ben what she is feeling and how it is affecting her. He does not recognize the cues or have the sensors to know what she is experiencing, so she needs to draw him the map of her illness. One useful indicator couples can incorporate into their language is the 1 - 10 scale (where 1 is let's go to Cancun and 10 is shoot me now). In this way, both partners can see the illness and discuss its implications.

But it isn't enough to just understand how big or small the illness is at a given moment. Ruth and Ben need to talk about how to interact -- what questions can they put to each other, how can they state their needs wherever they are on the illness scale, how can they signal the need for attention or for alone time, how can they be together in silence and in inactivity.

And in addition to asking for what they want, they need to explain what they don't want. Ruth needs to be able to say, "I am taking care of myself in the best way I know how. When you tell me to try going for a walk or how well I'm looking, I feel diminished. Like you don't know me and don't appreciate how hard I'm trying."

And then Ruth can take it one step farther and ask for what she needs from Ben - who really does want to help. Ruth can say, "Ben, I know you're worried and want to help. What would really help is if you could acknowledge that you do see both my pain and my efforts; and just ask me how you can help instead of making suggestions."

And Ben needs to let Ruth know how confusing this is for him and that he can't always tell how she is doing and needs her to let him know if this is a good day (or hour) or a bad one. Ben needs to let Ruth know how alone he feels and that he wants her to invite him into her illness. That when he can help her or comfort her, he feels close to her.

And they both need to be able to have their own form of down time - whether that's meditating or watching football. Again the key is communication. Instead of disappearing into the ozone, each needs to tell the other that he/she is taking a break.

Sometimes, just putting explanatory words under the actions, like subtitles, helps the partners get through it together.

Helping Couples Cope with Breast Cancer

Helping Couples Cope with Breast Cancer
from the Patriot Ledger

Social work professor Karen Kayser hoped her research would help couples cope with breast cancer. What she didn’t expect was how useful it would be when she was diagnosed with breast cancer 21/2 years ago.

“I knew how important it was to have a positive outlook and a supportive partner.”

Breast cancer, she’d learned, is a “we-disease,” and women and men each coped better when each received support.

“I knew it would be important to talk about my husband’s feelings as well as my own,” she said. “I made a concerted effort to be aware of what he was going through, and he was able to support me.”

In essence, Kayser put into practice what she learned from the clinical trial of her Partners in Coping program, developed to help couples communicate and support each other.

In the three-year trial, 26 couples at Mass General Hospital and Dana-Farber Cancer Institute in Boston met nine times with an oncology social worker to focus on specific topics, such as balancing the illness with household and family responsibilities, emotional responses to vulnerability, and feelings about sexuality. After six and 18 months, they answered a follow-up questionnaire.

The control group of 26 other couples were referred to a social worker, the more standard approach. The couples ranged in age from late 20s to late 60s, and all the women had cancer that had not spread and had been diagnosed within the past three months.

“The couples in the program tended to do much better coping than the control group,” Kayser said. “They were talking about their stress, empathizing with each other and showing affection. Over and over, people would say, ‘These are things I think but never talk about.’ Coming into a neutral place and having someone facilitate the discussion opened up what was going on.”

The program was especially helpful for younger couples, who in general found the diagnosis more distressing because of their age and the demands of working and raising children, she said.

“It’s all about people coping with stress and trauma,” Kayser said. “How can you take something devastating and transform it into something good in the long run?”

Grand Round is up at Mexico Medical Student

This Grand Rounds (the week's collection of posts from the health blogosphere) at Mexico Medical Student even includes music.