As part of my pain fighting routine, I swim 3 times a week at the Physical Therapy facility I was treated at recently. I now have a gym membership which allows me access to all the equipment they have, including their lovely, warm pool. I have been doing this for about 2 years.
A few months ago, I noticed someone new in the pool. I'd see her once in a while and my only -- admittedly short-sighted and somewhat prejudiced -- thought was that she was obviously an athlete because she was in excellent shape, the kind of shape anyone would be envious of but those of us who've spent our lives as non-athletes can really envy.
Most people in the pool stay to themselves unless in a class or you've simply seen each other far too often not to say hello. By nature, I tend to stay to myself and go about my routine, which takes about 1 1/2 hours. It seemed to me that this girl -- who is probably in her early 30s but that's young to me -- was of a similar mind: keep to yourself, do your thing and leave.
Last week, I arrived just as the arthritis class of about 4 women were leaving. This girl was also in the pool but was in the jets at one end which usually signals the end of your workout. So I expected her to leave soon and to turn off the jets. But she stayed. I started, as I do every workout, by walking up and down the pool -- forwards then backwards 30 times. After about my 5th lap, I glanced up to find this girl half kneeling on the seat by the jets nearly in tears. I couldn't remain silent.
I said, "I can feel the waves of pain coming off you. You're having a bad day, right?"
And she started to cry. Just tears coming down her obviously agonized face.
I added, "I honestly do know how you're feeling."
And she started to tell me her story.
Nothing I had assumed was true. Her body's excellent condition is genetics; she hasn't worked out since 2000 because of a back injury which lead to neck problems which lead to low back problems and on and on and on... with no real relief. She wears a pain patch (I don't know what kind of medicine it is) that she rolled her eyes at and said how much it didn't help. She talked about her doctor and the rest of her pain team, all of whom she likes except the pain doctor himself (on a team with a neurosurgeon, pain psychologist and others). She said he was an ass and didn't hear anything she was saying and she was beyond frustrated.
Sounded like deja vu and I told her some of my own story. We talked as I continued my routine and she lingered in the pool, doing more stretches and floating, as we all do when we're done working out. She told me she's not a talker or a cryer but she'd reached her saturation point that day. As we were alone in the pool for about an hour, we talked and compared notes and commiserated. It is rare that you, as a pain patient, have this kind of opportunity to actually talk to another pain patient. Unless you're in a support group -- and so many of us aren't joiners by nature and our pain makes us even less likely to join -- there is no give and take between people going through the exact same thing, dealing with chronic pain, as we are.
She left the pool before me but I followed a few minutes later. When I got to the locker room, she was showering and I could hear her efforts to just move in the shower. By the time I was dressed, she was drying off and nearly in tears again.
I said, "It hurt to even get dressed, I know."
That's when she turned to me and said, "Thank you for talking to me. I'm usually not a talker but you really helped me today."
I got a little choked up, I admit, because helping people going through the same horror I've been going through for 40 years feels good. I actually find something -- finally -- good in what I've experienced with pain. If I can give one person a little understanding, then that helps me in return, to feel I'm accomplishing something for someone else. It's a great feeling.
I told her, she was welcome and to just remember there really are people out here to understand.
She told me her schedule and I told her mine. I wasn't able to get back to the pool this past week but I'll be there this coming week. If I run into her again, great. If not, I know I gave her a moment of understanding and, sometimes, that's all it takes to lift our burden, at least for a few moments.
The girl in the pool said I helped her but she helped me just as much. I got a kick in the ass for making assumptions about other people but I also got validation in return for my empathy and that is as a better pain pill than most.
Saturday, May 28, 2016
Friday, May 27, 2016
DNA Pain Study
I am a patient at the USC Pain Management Clinic (Los Angeles, CA), have been for approximately 30 years. About three months ago, I became part of a DNA study about how the body of a chronic pain patient processes pain medication. It involved a DNA swab of the inside of each cheek and filling out some rather long, in depth questions about different aspect of my pain, of my daily ability to maintain my health, myself and my life. I got the results this past Monday.
The outcome told me that I am NOT susceptible to opioids . I already knew that from my lengthy dance with pain meds; trying this, trying that, etc etc etc. But having it written in medical-study ink gave some power to me as a patient. This study indicated strongly that I can be given opioids with no risk of physical addiction.
This is a new study and I don't know if it's taking place anywhere other that USC. But it seems to me that this is a HUGE step forward in pain treatment. If doctors can run a DNA test to see which medications a patient is and isn't reacting well to or has the potential to react poorly to a drug or family of drugs, addiction from doctor prescribed opioids would drop significantly. Which would mean more effective treatment of acute and chronic pain, especially chronic pain. People who can chemically process opioids would be able to rely on them without doctors and hospitals and family and friends and the public thinking them drug addicts.
This is just a first step. But it's an excellent step. One I will continuing taking part in. My recent visit to my pain doctor also included filling out questions again. They are lengthy and address different aspects of chronic pain and how it effects your life but that's a good thing. Details given by patients along with the DNA information is how treatment of pain is going to grow past the sense that you're a criminal if you ask for pain medication, even with good cause.
I have been fortunate to be treated at USC Pain Management Clinic by Dr. Linda Rever for 30 years. She knows me. She knows my reactions to different treatments; we've tried everything there is to try over time. And we might go on trying new things to see if my treatment can be taken in a different direction for better pain relief.
The study also showed my body's reaction to the other medications I'm on; a cocktail of multiple pain blockers. It showed I have a tendency toward toxicity with two of the medications in that cocktail so now the doctor knows to track those two drugs more carefully, to test for side effects. This is also information for *me* to use. I now know what to watch for in myself and to track what is and isn't normal reactions to the medications I take each day.
This is a powerful step forward in the shadow of the CDC's recommendations about opioid prescription, it's advice to try everything BUT opioids before prescribing them. Which sounds fine unless you're the person in pain right now. Not in a week, not in three months, NOW. Trying hypnosis and meditation and using psychological tools to overcome pain sounds great. But from someone who is often stricken with pain so bad that I am immobile, the only thing that will allow me to live to the next day when I am stricken with this level of pain is serious pain medication.
Not to knock these other treatments. I've been meditating regularly for about 30 years. Every night and, if it's a bad day, more often. I regularly see a psychologist who helps me deal with living every day with chronic pain. I've tried hypnosis and acupuncture and acupressure and things that seem like Voo Doo. I'm not telling anyone not to try alternative methods of pain relief. But access to opioid medication is necessary. Until something else comes along to indicate more precisely how each person should be treated -- possibly a DNA study of chronic pain -- they are the best option we have.
The outcome told me that I am NOT susceptible to opioids . I already knew that from my lengthy dance with pain meds; trying this, trying that, etc etc etc. But having it written in medical-study ink gave some power to me as a patient. This study indicated strongly that I can be given opioids with no risk of physical addiction.
This is a new study and I don't know if it's taking place anywhere other that USC. But it seems to me that this is a HUGE step forward in pain treatment. If doctors can run a DNA test to see which medications a patient is and isn't reacting well to or has the potential to react poorly to a drug or family of drugs, addiction from doctor prescribed opioids would drop significantly. Which would mean more effective treatment of acute and chronic pain, especially chronic pain. People who can chemically process opioids would be able to rely on them without doctors and hospitals and family and friends and the public thinking them drug addicts.
This is just a first step. But it's an excellent step. One I will continuing taking part in. My recent visit to my pain doctor also included filling out questions again. They are lengthy and address different aspects of chronic pain and how it effects your life but that's a good thing. Details given by patients along with the DNA information is how treatment of pain is going to grow past the sense that you're a criminal if you ask for pain medication, even with good cause.
I have been fortunate to be treated at USC Pain Management Clinic by Dr. Linda Rever for 30 years. She knows me. She knows my reactions to different treatments; we've tried everything there is to try over time. And we might go on trying new things to see if my treatment can be taken in a different direction for better pain relief.
The study also showed my body's reaction to the other medications I'm on; a cocktail of multiple pain blockers. It showed I have a tendency toward toxicity with two of the medications in that cocktail so now the doctor knows to track those two drugs more carefully, to test for side effects. This is also information for *me* to use. I now know what to watch for in myself and to track what is and isn't normal reactions to the medications I take each day.
This is a powerful step forward in the shadow of the CDC's recommendations about opioid prescription, it's advice to try everything BUT opioids before prescribing them. Which sounds fine unless you're the person in pain right now. Not in a week, not in three months, NOW. Trying hypnosis and meditation and using psychological tools to overcome pain sounds great. But from someone who is often stricken with pain so bad that I am immobile, the only thing that will allow me to live to the next day when I am stricken with this level of pain is serious pain medication.
Not to knock these other treatments. I've been meditating regularly for about 30 years. Every night and, if it's a bad day, more often. I regularly see a psychologist who helps me deal with living every day with chronic pain. I've tried hypnosis and acupuncture and acupressure and things that seem like Voo Doo. I'm not telling anyone not to try alternative methods of pain relief. But access to opioid medication is necessary. Until something else comes along to indicate more precisely how each person should be treated -- possibly a DNA study of chronic pain -- they are the best option we have.
Monday, April 18, 2016
Some Sad Words
I am stunned and in shock and don't know what to say yet. But this is my Facebook post from this morning. For now, it will have to suffice.
My sweet friend, Tyr Jósue Rousseau passed from liver failure last night. He was 36. I met him as a teenager and over the years grew to love and appreciate the beautiful human being he was. Loving and generous and just so, so kind. He became my confidant and companion in silliness. He was a delight. His demons were strong but he fought as hard as he could. His body failed him but his spirit was so strong. Love and deepest sympathy to his husband, Finor André Rousseau and his sister, Margarita Valencia. Love you both so much. Tyr will always be in my heart.
Now, a week later on April 23, I'm not quite in so much shock, although this past week has seemed like a very horrible dream. I thought I'd just write and see what happens.
I met Tyr, as I said, when he was about 18 years old. He and his friends (George and Scorpion) would hang out behind the booth my business partners and I had at the Palm Springs Street Fair every Thursday night. The boys caught my eye because they were Goths but also because they were sweet when they bought incense from us. As time passed, I got to talking with them, especially Tyr, and he eventually joined me in the booth to help sell intense on Thursday nights. Between customers, we'd talk about anything and everything and came to know each other pretty well.
He and I started meeting up for lunch and/or a movie or just to browse Borders in Palm Desert. I was invited to his house and he pet/house sat for me in Yucca Valley when I had 7 cats. After the first time, he swore he'd never sleep in my house alone again; it spooked him. He also saved me from several computer tantrums, always patient with my low-tech knowledge.
Then came my obsession with the TV show, The Sentinel, and in particular with one of the stars, Garett Maggart. Tyr joined me for a charity event in Big Bear, California at the Moonridge Zoo (an animal refuge for injured wild animals that cannot survive in the wild and which has a different name now that they're moving to a new site: Big Bear Alpine Zoo). The zoo is Garett's chosen charity and every year fans of The Sentinel would get together for an online auction to raise money for the zoo. There was also an on site auction the day of the event. We raised well over $10,000.00 each year.
The first time Tyr and I went, in 2002, we had a great time looking at the animals and talking with fellow fans and just hanging out at a really cool place. The zoo was on a hillside with dirt and gravel terrain which could be a bit slippery. Without any fuss, Tyr would offer me his arm, worried that I might place a step wrong. He was like that, gave what was needed without any attention being paid to what he was doing or why he was doing it. He gave me dignity when I might have felt uncomfortable asking for help.
We waited in line for Garett's autograph and, as we drew closer to the front of the line, Garett had already mentioned the presence of another "dude" (the people who attended the even were mostly women) but when he finally saw Tyr clearly, the first thing he did was stand up and say, "Ozzy fucking Osborn!" See the picture below for clarification.
I love this boy, this gentle man he grew into in front of my eyes. He was a website designer and did my website for me in exchange for tattoos (when I was a tattoo artist). I always enjoyed tattooing him because he complained the whole time but never wanted to rest when I offered. While tattooing winged lips on his thigh right above his knee, I heard some of the most creative cursing I've ever encountered. He called me names, laughing and crying and just generally trying to get through it any way he could. But he came back for more so it couldn't have been too horrible an experience! Such a good guy. So caring and generous and fun to be around.
I will always love him. Though he was 20 years younger than me, there was rarely an age issue. Once in a while he wouldn't get a reference I made -- and I often was clueless about things in his life, which he then taught me about -- but, other than that, we were equals. He went to a few plays with me. He came to my parents' house in Huntington Beach to help with computer problems. He called a few days after I had my 3rd neck surgery and was healing at Mom and Dad's. I was so out of it on pain meds that I didn't remember talking to him but I apparently talked to him for quite a while. *That* was something he always liked to bring up to tease me about.
Tyr meant the world to me. When he met Finor, I saw how happy he was. I saw how important this new man was to his life. And I kinda fell in love with Fin a bit, too, because he made my friend so happy. I attended their formal wedding at their house in Palm Desert. It was such a beautiful day. The yard was gorgeous, as were the grooms. I cried a bit, I'll admit. Fin came to be my friend, too.
When they moved to Portland, Oregon, our lives separated, as lives will when distance becomes involved. But I talked to Tyr on the phone and we e-mailed a lot. I saw him and Finor only a few months after I moved to Corona. They came to my house and we had a good time before they had to leave to drive home to Portland.
That was the last time I saw Tyr and I didn't talk to him much after that, either. Do I wish I'd been more insistent on communication? A little. But Tyr's life had gone in a direction I couldn't be part of and so did my life, veering off from his. I thought of him often, though, and continued to consider him a dear friend. I always will.
His passing has been extremely difficult to deal with and I don't know what will become of Finor. I worry about him now. I know Tyr would want him to be cared for and I will always care for Finl. He knows I'm here for him forever and always.
I will miss my sweet friend. I will always have regrets that he didn't get to experience more of life. But Tyr was someone who grabbed life and strangled every bit out of it he could. His life was as large as he was.
I've run out of words. I love you Tyr. RIP.
My sweet friend, Tyr Jósue Rousseau passed from liver failure last night. He was 36. I met him as a teenager and over the years grew to love and appreciate the beautiful human being he was. Loving and generous and just so, so kind. He became my confidant and companion in silliness. He was a delight. His demons were strong but he fought as hard as he could. His body failed him but his spirit was so strong. Love and deepest sympathy to his husband, Finor André Rousseau and his sister, Margarita Valencia. Love you both so much. Tyr will always be in my heart.
Now, a week later on April 23, I'm not quite in so much shock, although this past week has seemed like a very horrible dream. I thought I'd just write and see what happens.
I met Tyr, as I said, when he was about 18 years old. He and his friends (George and Scorpion) would hang out behind the booth my business partners and I had at the Palm Springs Street Fair every Thursday night. The boys caught my eye because they were Goths but also because they were sweet when they bought incense from us. As time passed, I got to talking with them, especially Tyr, and he eventually joined me in the booth to help sell intense on Thursday nights. Between customers, we'd talk about anything and everything and came to know each other pretty well.
He and I started meeting up for lunch and/or a movie or just to browse Borders in Palm Desert. I was invited to his house and he pet/house sat for me in Yucca Valley when I had 7 cats. After the first time, he swore he'd never sleep in my house alone again; it spooked him. He also saved me from several computer tantrums, always patient with my low-tech knowledge.
Then came my obsession with the TV show, The Sentinel, and in particular with one of the stars, Garett Maggart. Tyr joined me for a charity event in Big Bear, California at the Moonridge Zoo (an animal refuge for injured wild animals that cannot survive in the wild and which has a different name now that they're moving to a new site: Big Bear Alpine Zoo). The zoo is Garett's chosen charity and every year fans of The Sentinel would get together for an online auction to raise money for the zoo. There was also an on site auction the day of the event. We raised well over $10,000.00 each year.
The first time Tyr and I went, in 2002, we had a great time looking at the animals and talking with fellow fans and just hanging out at a really cool place. The zoo was on a hillside with dirt and gravel terrain which could be a bit slippery. Without any fuss, Tyr would offer me his arm, worried that I might place a step wrong. He was like that, gave what was needed without any attention being paid to what he was doing or why he was doing it. He gave me dignity when I might have felt uncomfortable asking for help.
We waited in line for Garett's autograph and, as we drew closer to the front of the line, Garett had already mentioned the presence of another "dude" (the people who attended the even were mostly women) but when he finally saw Tyr clearly, the first thing he did was stand up and say, "Ozzy fucking Osborn!" See the picture below for clarification.
At the time, Tyr carried this lunchbox with him everywhere. He was seriously Goth. His hair was down to his waist but it was pulled back in this picture. Garett was fascinated with him and, ever after, I always teased Tyr that Garett liked him better, which never failed to make Tyr laugh. Even when I went to events alone, Garett would ask after Tyr. He made an impression everywhere he went.
By the following year, the Goth look had mostly faded away, leaving this beautiful face and knowing eyes revealed. This is a picture of Garett, Tyr and myself in 2003 at the Moonridge Zoo charity event. Garett insisted on all three of us being in the picture and was making jokes and all three of us were laughing so hard that this is the only picture of many that really came out clear, when one of us wasn't moving due to laughter. I think this was my favorite year in Big Bear.
As you can see in the picture above, Garett's about my height, which is far short of how tall Tyr was. So, in 2005, I guess he thought they had to be the same height. This is Tyr trying to be short and Garett trying to be tall. Tyr had cut all that beautiful hair off, too, and started wearing glasses. I took him to get his hair cut off and I think I cried the whole time; he just laughed, mostly at me.
And, finally, in 2006, the picture that embodies Tyr to a "T". He didn't want me to take his picture and actually refused to have a picture taken with Garett that year. He was feeling unattractive and had been depressed. It took some convincing to even get him to go with me that year. So, while he was sitting on a bench at the zoo, I just pulled out my camera and waited him out. He eventually looked at me and ducked away so I didn't get a picture of him at first. Then I got this one... with editorial comment.
I love this boy, this gentle man he grew into in front of my eyes. He was a website designer and did my website for me in exchange for tattoos (when I was a tattoo artist). I always enjoyed tattooing him because he complained the whole time but never wanted to rest when I offered. While tattooing winged lips on his thigh right above his knee, I heard some of the most creative cursing I've ever encountered. He called me names, laughing and crying and just generally trying to get through it any way he could. But he came back for more so it couldn't have been too horrible an experience! Such a good guy. So caring and generous and fun to be around.
I will always love him. Though he was 20 years younger than me, there was rarely an age issue. Once in a while he wouldn't get a reference I made -- and I often was clueless about things in his life, which he then taught me about -- but, other than that, we were equals. He went to a few plays with me. He came to my parents' house in Huntington Beach to help with computer problems. He called a few days after I had my 3rd neck surgery and was healing at Mom and Dad's. I was so out of it on pain meds that I didn't remember talking to him but I apparently talked to him for quite a while. *That* was something he always liked to bring up to tease me about.
Tyr meant the world to me. When he met Finor, I saw how happy he was. I saw how important this new man was to his life. And I kinda fell in love with Fin a bit, too, because he made my friend so happy. I attended their formal wedding at their house in Palm Desert. It was such a beautiful day. The yard was gorgeous, as were the grooms. I cried a bit, I'll admit. Fin came to be my friend, too.
When they moved to Portland, Oregon, our lives separated, as lives will when distance becomes involved. But I talked to Tyr on the phone and we e-mailed a lot. I saw him and Finor only a few months after I moved to Corona. They came to my house and we had a good time before they had to leave to drive home to Portland.
That was the last time I saw Tyr and I didn't talk to him much after that, either. Do I wish I'd been more insistent on communication? A little. But Tyr's life had gone in a direction I couldn't be part of and so did my life, veering off from his. I thought of him often, though, and continued to consider him a dear friend. I always will.
His passing has been extremely difficult to deal with and I don't know what will become of Finor. I worry about him now. I know Tyr would want him to be cared for and I will always care for Finl. He knows I'm here for him forever and always.
I will miss my sweet friend. I will always have regrets that he didn't get to experience more of life. But Tyr was someone who grabbed life and strangled every bit out of it he could. His life was as large as he was.
I've run out of words. I love you Tyr. RIP.
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