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.
Friday, May 27, 2016
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.
Thursday, November 19, 2015
Really just a new poem. I've been in Oregon since November 12 and will be here until November 22. I'm here hunting for a place to live as living in Southern California is an impossibility for me now; far too expensive. I'm not sure this is where I'll be going. I'm sort of on a fact-finding mission. But, on the drive up here, especially through central California's farmlands, the breadth of the drought the state is suffering was palpable. And disheartening. This is the poem that is the result of driving north on I-5.
Driving North
on I-5
(Oregon)
A
modern dustbowl –
signs
asking:
“Does
growing food mean
wasting
water?”
as
we fly past a
cutoff
for Yosemite;
grapevines
going rusty
in
the autumn sun as
we
pass Dos Amigos View Point.
The
land is bone-dry,
dry
as papyrus,
brittle
as a forgotten soul.
By
the time we pass
Crow's
Landing
the
sun is setting,
glancing
off the paper-thin
limbs
of desiccated trees.
As
we miss our last chance
to
turn toward Yosemite,
even
I begin to flake
into
peeled-back bark;
behind
us,
all
we see is dust.
Saturday, October 17, 2015
What Does a California Girl Do When It Rains?
First thing, I get pretty excited. I love the rain and have missed it over the past few years. So, yesterday, while I was outside in my painting studio (a semi-enclosed patio) and it started to rain, I looked up sharply and smiled and told the dog: "That's rain. Remember rain?" He didn't have much to say about that but he did go frolic in the wet grass for a while.
The rain passed quickly, lasted only a few minutes, but it left me thinking and this is what resulted:
That's really all I had to say about it! But, having poetry return to me, as it does in jerks and twists, made me think again about the idea I had to start a poetry blog. As I'm still pretty new to the blogging world, I was just wondering if any of you would be interested in reading and taking part in a poetry blog. It could encompass my own poetry and, in response, I would hope you'd share yours here, also. It could also cover poets we all love, poets we're just discovering. I'm anxious to have new poets introduced who I may not have come across but you have.
The other thought was a poetry Facebook page that would serve the same function.
So, what do you think? Leave your thoughts in the comments, please.
The rain passed quickly, lasted only a few minutes, but it left me thinking and this is what resulted:
California Rain
You
stab my sun-dried senses with Petrichor;
the
perfume of swollen sand
and
desert chaparral –
the
free nature of your Hollywood landscape.
The
breeze opens her arms
to
your cooling touch,
alien
fingers of moist love –
saturated
need – and I,
I
feel the brittle corners
of
my petrified thoughts
wriggle
in the mud at my feet.That's really all I had to say about it! But, having poetry return to me, as it does in jerks and twists, made me think again about the idea I had to start a poetry blog. As I'm still pretty new to the blogging world, I was just wondering if any of you would be interested in reading and taking part in a poetry blog. It could encompass my own poetry and, in response, I would hope you'd share yours here, also. It could also cover poets we all love, poets we're just discovering. I'm anxious to have new poets introduced who I may not have come across but you have.
The other thought was a poetry Facebook page that would serve the same function.
So, what do you think? Leave your thoughts in the comments, please.
The Beginning of the First Ten Years
Ski racing, especially downhill, is a dangerous activity and there are many accidents. It would be really too bad to lose everything because of a crash.
-- Hermann Maier,
Austrian Alpine Skiing Olympic Gold Medalist, 1998
I wasn't a ski racer, let alone an Olympic downhill level racer. I skied the pace I skied, relatively fast for an amateur skier who only got the opportunity to ski three or four times a year. The people I skied with could keep up with me, but rarely did. My Uncle Jack and I skied at about the same level which is why I always treasured his company -- the fact that he was a fun guy to be around helped, too.
Snow skiing was the family sport. Not just my parents' and siblings' sport but that of my aunt and uncle and cousin along with my mother's multitudinous aunts, uncles and cousins. It was like a tribal meeting whenever we'd make the big ski trips to Mammoth Mountain, California. And I was arguably the best skier out of everyone. I was about 8 when we began skiing in Big Bear, California. We all took lessons, we all liked the experience, except for my sister who really never took to it like everyone else and who soon was pregnant with her first child -- I'm 8 years younger than my sister and she married at 19. Even my little nephew and niece were skiing from the time they could walk, on little "ski skates" hanging between someone's poles that we held horizontally so the kid could be between our skis. Even some of the family friends joined in. Skiing was just something we did, something we enjoyed.
In 1973, when I was 14, I was attending a small private school in Ojai, California. One spring, the entire school planned a trip to Mammoth for a week. I happened to be home visiting and the family and I were going to meet the school up there, take advantage of the timing and go on a trip. When I say "spring", I mean April-ish. The snow was usually okay to ski on until May or June back then -- you know, when we had predictable weather? I'm fuzzy about all of the particulars as both time and injury have clouded my memory. But this is what I recall.
As I've already written in my poem, "The Fall" (which is contained in the last few blog posts), it was a beautiful day the day my father, my brother-in-law (Wally) and I decided to take on the biggest challenge any of us had faced on that mountain: the very top of Mammoth, "The Cornice". This was a very steep run with a concave -- rather than a convex -- curve to it. In fact, you had to take a narrow trail down to get on to the run, almost having to jump a little from the narrow approach to the run itself.
Dad went down first and had just turned around to tell Wally and me not to follow him, that the run was too icy, when I -- standing on the narrow approach, ready to get to the run any second -- felt the snow just crumble beneath my down-hill, right, ski. And the world disappeared in a jumble of beautiful blue sky and hard, icy, slushy white. It was, I imagine, like tumbling in a clothes dryer. Round and round and round I went. My body hit the snow and bounced, hit the snow and slid, hit the snow and tumbled, hit the snow and cracked. The ski poles I had in each hand -- safety straps around my wrists -- poked me in the face, the eyes, my ribs. My skies, secured in those days by a safety strap around the ankle, hit me in the head, the back, the legs.
Through all this, my brain was rejecting what was happening. In fact, I have an odd memory of seeing my body falling from a higher vantage point, like I was standing on the top of the next run over looking down. Then, like a door closing, everything stopped. Even sounds seemed to have ceased. Then I heard voices telling me not to move, to lie still. People brought pieces of me down: my sunglasses that had fallen off, the shirt I'd had tied around my waist and other little paraphernalia I'd had with me. So, there I lay, head downhill, on my stomach, arms and legs splayed, skies hanging off my boots and poles still hanging from my wrists.
Then Dad was there, frantic of course, and he told me, again, to lie still. But by then I'd done a quick check to see what hurt and nothing really did. I think I was pretty cold and numb and, most likely, in shock. So, after a while, I sat up. Dad unhooked my skies and poles and sat there with me for a while. Then, deciding I really was okay, I slowly got to my feet... and nearly collapsed. My stomach felt like a cannon ball had hit me in the gut. My head felt like it had been run over by elephants. My legs felt like they were everything but broken, as did my arms.
Dad had me sit down again and took my skies and stood them in the snow uphill from me, crossed in the universal sign of distress so that the ski patrol would know we needed help.
Unknown to us at the time, Wally -- who'd remained at the top of the run and had watched me fall -- had already sent the ski patrol but they'd gone by while I was standing up before Dad had put my skies up in the snow. So when a second ski patrol team came down the run, they stopped to help. I think they had to call for a sled and, while we waited, they asked me all kinds of questions, checked me over for broken bones, etc. And then packed me into the sled when it arrived. They wrapped me up and strapped me in, head downhill, and one of them took the front of the sled and another took the back of it and down we went.
Again, my memory is hazy but I remember snow in my face and my head hurting more and more, feeling like blood was rushing to it, which it probably was doing as the ski patrolmen had to negotiate some very steep runs to get me to the bottom. And it seemed to take a very long time, longer than it normally would take to get from the top of the mountain to the bottom. Twenty minutes? Thirty? I had no idea what kind of time passed.
My next memory is being in the ski patrol infirmary.
And that's about it for this time. It's important to know the beginning of the tale so that the rest of it will make more sense. It's a 40+ year story and I appreciate you sticking with me as it unveils itself here!
Saturday, April 11, 2015
Guardian Angel
What
is it called when a thing that was defined by necessity as
"uncertain" changes its very nature to become redefined as
"stable"? If I knew, I'd know how to title this post; as it
is, I'm waiting until I finish to figure that out.
I
ask that question because I've spent the majority of my life with a
sword dangling over my head, almost literally. The accident I wrote
of in "The Fall" left me with multiple complicated injuries
that went undetected for many years, then went untreated for many
more while a cadre of doctors from the four corners of the
Continental United States poked, prodded, X-rayed and examined me and
collectively threw their hands in the air about what, if anything, to
do to help me.
Eventually,
in 1984 when I was 25, I had cervical spine surgery to correct a
herniation with complications I will never truly understand. This
happened at Loma Linda University Hospital in Loma Linda, California
(east of Los Angeles). Four years later, I had another cervical spine
surgery at the same hospital. That surgery was botched but I wouldn't
find that out for 18 years.
After
Loma Linda, I went to USC University Hospital for Pain Management.
When my symptoms seemed to indicate more of the extensive damage in my
neck might need surgical attention (again), I was sent to the
Neurosurgery Department at USC. There I found a wonderful doctor, Dr.
Stillerman, who put off surgery, thinking it wasn't time to do more
than keep me as stable as possible -- my collection of neck braces
was impressive -- and see how I progressed. He was replaced by Dr.
Samudrala who has turned out to be my guardian angel.
In
2004, I went in with my annual MRI for my annual visit with Dr.
Samudrala and he looked at the new films and said I needed C-4/5
corrected as soon as possible, which turned out to be a week after
that appointment, on my 45th birthday. Surgical techniques had
changed over the years so this experience was vastly different
(better/easier) than my 2nd surgery 18 years prior. Once I'd healed
(this time, a plate was implanted so I had no neck braces), Dr.
Samudrala told me he thought I'd need at least one more surgery in the
near future. So I continued to be monitored by my Pain doctor and saw
Dr. Samudrala as needed.
He
soon moved on to Cedars-Sinai and I followed him there for annual check ins since he was
the one doctor out of dozens I've seen who spoke to me honestly and
simply as one person to another. He then moved to Glendale Adventist
Hospital and I followed him there, too. So, two years ago -- in 2013 --
when the little finger and ring finger on my left hand went numb
overnight, my first thought was "Oh, shit, it's my neck"
and I immediately contacted Dr. Rever, my Pain doctor, who ordered a
new MRI and, when she read that report, told me to go see Dr.
Samudrala, which I did.
At
that point, Dr. Samudrala was no longer doing complex surgery. He
said he thought I needed both C-3/4 and C-6/7 worked on and that
would be a long, hard, delicate surgery so he wanted me to go back to
USC. Which I did. This was in August 2014. The doctor I saw at the
USC Keck Spine Center sorta wasted a few months treating me as
though my injury was new, ordered a CT scan and flat X-rays, then
ordered an EMG (because my left arm from the elbow down was
tingling/numb even though I had elbow surgery to supposedly correct
that in early 2013). After all that, he said he wasn't comfortable
operating because he didn't think he could do enough to significantly
aid me in getting better. He sent me to UCLA.
After
days and days of phone calls, I got an appointment but it turns out
the UC system doesn't take my health insurance (I have
individual Blue Shield and no one wants to take individual insurance)
so I arranged to see someone at UC Irvine (they mislead me, telling me they
did take my insurance but, as stated already, it turns out no UC
hospital will take me). So, frustrated beyond belief, feeling
helpless and aggravated and in pain and exhausted, I turned back to
Dr. Samudrala for help.
He'd
told me months before that, if necessary, he'd help me get in to
Cedars-Sinai and it turns out they will take my insurance. But...
I
had an appointment yesterday (April 9) at Dr. Samudrala's new private
practice in Pasadena and the news was both really good and really
bad.
Let
me back up a moment. When I spoke to Dr. Samudrala on the phone after
the visit to UC Irvine, he calmed me down with a few words of support
and reassurance and told me to go see him. Two weeks after that
conversation, which eased a lot of severe stress for me, came my
appointment yesterday.
He
looked at my test films (CT, MRI, X-ray) then came into the room, sat
down near me, looked me in the eye and said, "Let's see what
your reports say". These were the reports from USC and the test
reports. So he read them sitting there with me. Then he looked at me
and asked what my main symptom was and I said what I've told every
doctor, "Pain". I have no obvious neurological symptoms: no
paralysis, no weakness in my limbs, no obviously treatable issues
that can be traced directly back to specific injured nerves,
herniated discs or bone fragments.
He
asked me to refresh his memory of the surgery that he did 10 years
ago so I did and he said, "Now I'm remembering. Actually, I'm
remembering the nightmare." The look he gave me spoke volumes.
He told me he remembered opening me up and seeing a mess inside, that
he probably should have cleaned out more bone but he was mainly
concerned with correcting a rapidly moving forward bend to my spine
that was impinging on the spinal canal at that time. So he did that,
put in the plate and closed me up. That was a long enough surgery.
A
few weeks later, when I returned for my first post-op visit with him
at USC, he said he thought I'd need at least one more operation "by
the time you're 40". As I said, I turned 45 on the day of
surgery. He can't tell age very well I don't think.
He
was pleased with my healing and, three months later, after spending
all that time healing at my parents' house, Dr. Samudrala released me
back into Dr. Rever's hands.
Back
to yesterday. After reading all the reports and looking at all the films, speaking to me and listening to me, he said, "The reason no one wants to do any
surgery is because it's too dangerous and no one wants to make you a
quadriplegic.” He said that if where we were sitting was “1”
and the moon was “10” on a scale of how dangerous surgery would
be for me, I'm at about 7 ½ to 8, far too dangerous right now. And I
agreed. So did my dad, who usually goes with me to these kinds of
appointments just to be a 2nd
pair of ears.
So,
while Dr. Samudrala scared me with the prospect of the danger of
surgery, he reassured me that my neck is pretty stable right now.
“You grow bones where you shouldn't be growing bones,” he told
me. “The entire right side of your cervical spine has boney
growths.”
He said I could go see one of 2 doctors at Cedars-Sinai but they won't do surgery on me, either. I see no point in putting myself through unnecessary doctors' visits, not to mention the drive from east of L.A. to Beverly Hills.
All
of this was scaring the hell out of me, you understand, and I walked
in to the appointment beyond stressed. The past two years have been
their own kind of hell that no amount of description will truly
describe.
I,
of course, asked where this left me and he said it left me with him.
He wants to see me again in 6 months. Then he did the most remarkable
thing anyone has ever done for me. He'd been holding my hand
throughout this discussion but he squeezed my hand and said: “I'm
not going to leave you. I'll always be here for you.” I must have
looked as struck dumb and as amazingly grateful as I felt because he
said, “Does that make you feel better?” and I nodded and said,
“You have no idea. You're going to make me cry.” He said it was
okay to cry but I held off until I'd made the appointment for 6
months from now and Dad and I left the office. Once in the hallway,
though I sorta collapsed against the wall and started to cry. I was
overcome by his compassion, his honesty, his reassurance, his
humanity not to mention the cancellation of the on-going, threatening near-certainty that
I'd need a 4th
cervical spine surgery.
A
weight that was becoming almost too heavy to bear lifted off of me
yesterday and I've been in a bit of a mental muddle since.
My
next step will be back with my Pain doctor now that we have a clear,
realistic view of my physical situation. Dr. Samudrala said that now
I need to treat my pain. I need to medicate myself, something I've
been loathe to do for many years. I have a cocktail of pain-blocking
meds but they only work so much. I've had prescriptions for
narcotic-strength pain meds for many years but have rarely used them.
I need to use them now. And I need to ease the hell off myself. I've
had to be strong for nearly 35 years. It's hard to relax from that
kind of hyper-vigilance.
It's
going to take some experimenting and a
lot
of work on my part to learn how to be this new evolution of myself,
this person who is truly a chronic pain patient. I've known that's
described me for many years but I never really accepted what that
means and it's going to take a little while for me to internalize,
understand, and accept this new designation. But I will work it into
my world view. It may take some time but I'll get there.
This
post is by way of me expressing just how important Dr. Samudrala has
been -- and continues to be -- to me. This is why I tell people that if they're uncomfortable with a doctor or what a doctor says doesn't ring true, then that isn't your doctor. Keep looking for the right person who fits your needs. And I think I just found the title of this post.
Friday, March 13, 2015
Escapade 2015
Last weekend marked the 25th anniversary of Escapade, the little
California slash convention that is the remarkable work of two very
energetic, very enthusiastic women, Charlotte Hill and Megan Kent.
Now, they would tell you that the con works only because of their
vast number of volunteers and, to a point, they're right; the
smooth-running event relies heavily on knowledgable volunteers.
BUT... Charlotte and Megan were smart enough to blackmail
those volunteers into working for the convention. And I will say
right now that Escapade has always been a joy to attend from it's
early days in Goleta, California to its current incarnation at a
hotel near LAX.
Before
last year, I hadn't attended Escapade for over a decade. During that
time, the con had moved from north of Santa Barbara in Goleta to
south of Santa Barbara in Ventura, but I never experienced the con
there so I can't speak to the difference between that location and
the current location. I can say that the LAX local allowed me to
attend once again because I'm a "local" and didn't have to
contend with travel and hotel costs, leaving me free to pay for a
membership and purchase a dealer's table last year. This year, I only
was able to attend for one day, Saturday of Escapade.
I
arrived a bit before 10:00, took the Star Trek buttons I was donating
to the con's charity to the art show then dropped off a few of the
fanzines I edit and publish at the Orphan Zine table before I rushed
off to my first panel. But by that time -- fifteen minutes into my
con day -- I had already encountered a handful of people I hadn't
seen in many, many years and some I had only seen again last year
after a long dry spell.
The
first panel I went to was "Mainstreaming Slash", a panel
that was being filmed to be used as promotional material for the
convention. It was very well attended and very lively. The discussion
was about how we, as slash fans/writers/artists/etc, feel about the
producers and other show runners of our favorite series acknowledging
slash and, in some cases, talking about slash on screen and, in yet
other cases, either playing up to the slash fans or purposefully
"straightening out" their characters who are slashy. It was
a very interesting discussion. Concerns about the powers that be
wanting to cash in on slash were mentioned as well as our proprietary
leanings about slash. Some thought mainstreaming slash is inevitable,
some didn't, some didn't seem to mind the idea of slash "coming
out of the fandom closet", some did. Excellent panel, run by
Charlotte and Megan.
The
second panel I attended was "Captain America" and I
attended it because I simply adore the new Marvel Universe and have
always loved Cap. What I hadn't really thought of was writing slash
Captain America fiction or even looking for it to read. I don't know
why I hadn't thought of it, I simply didn't. But listening to people
discuss the large numbers of Cap writers and the various takes on the
the character of Cap and that of Bucky Barnes/The Winter Soldier
really took my mind in a direction it had never gone before. I really
enjoyed listening to these women who are obsessed with these
characters; their enthusiasm was quite contagious.
"Say
What You Mean" was the next panel I attended. This was about how
to convey your intentions when giving online feedback. It was
interesting but not something that brought up too many points that I
hadn't already thought about quite thoroughly as a zine editor of 30
years. It was fun to listen to everyone, though.
I
spent time in the Dealer's Room talking with friends and talking with
friends in the halls as we encountered each other. Quite a few people
attended this year who didn't last year due to the 25th anniversary
so I saw people I hadn't seen in well over 10 years. As always, it's
lovely to reconnect, to update contact information, to reminisce, to
laugh and to cry a bit.
My
last panel of the day was "Tumblr 102: Into Darkness". I
attended because I have no idea how to work Tumblr and have been
frightened of it! I'm still in the dark about it but some of the
mystery and fear of the unknown was washed away as I tried to follow
the discussion. Tech is most definitely not my thing.
More
time was spent catching up with friends before the day ended with the
song vid show. As always, it was great fun, despite there being
several videos about fandoms I couldn't identify. A great way to end
my con-going day.
Also,
this convention coming so close to the loss of Leonard Nimoy was a
good thing; I really needed to reconnect with fandom.
I
hope to be able to attend all of the next Escapade, not just
Saturday. I really have missed that sense of community, of continuity
as new fans attend and bring their fresh outlook to the mix.
I
think Charlotte and Megan do a shockingly excellent job running
Escapade. I highly recommend it to any slash fan out there.
[Fyi:
“slash” refers to fiction/art/videos and other creative
undertakings based on two – or more – characters of the same sex
in a sexual and/or romantic relationship. You have been warned!]
Subscribe to:
Posts (Atom)


