Roller-coaster metaphors have been popping up around me a lot over the last few days. And while they do seem to match this particular part of my life path, I'm really not fond of them. The jostling, the racket of the track which never changes, being surrounded by people having the same ride and screaming their own experience into the air. That's *really* not my cup of tea.
I've been describing this period of impending transition as "Taking a leap with all the materials necessary to build a parachute on the way down." While it's funny and gets most of my point across, it's not exactly the metaphor I'm looking for either. Even though I don't know what's out there and I'm not sure how it's going to happen, I still believe pretty strongly that this leap is about creating and experiencing new heights much more than transforming potential energy into a wild kinetic ride only to land (hopefully softly) on the ground somewhere below.
There is A LOT of faith involved in making my current life choices. It's the kind of faith that invites fear to get the hell out of the way. It's not that I'm fearless or reckless or even particularly courageous. It's that my life is so full of love and blessing that I really don't have much choice but to know that things will work out in their highest and best good.
So, no. This is not a roller-coaster. And these materials aren't for a parachute after all. This is a hang-glider I'm building, and soon I'll be soaring with the eagles. This is stepping off a cliff knowing that my body and support system will be able to sense and ride on the invisible but powerful thermals that are just waiting out there to lift us up.
This is my love-note to all the people in my life who make up my hang-glider. The ones who stand straight and strong against the buffeting gusts. The ones who wrap close and hold tight. The ones who stretch wide and flutter and giggle in the breezes. The ones who bend into the wind and help me get where I think I want to go. Thank you for making the space and time for me to try my wings.
This is also a love-note to Spirit. Who sings in my heart, whispers in my ear, and lifts my feet off the ground.
It is the wind asking me "How good can you stand it?"
And my reply, "Even more than I can imagine tonight!"
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Tuesday, September 28, 2010
Friday, December 12, 2008
Did it!
Tuesday night I posted about going to PT and the ridiculous gymnastics my brain did essentially avoiding the homework I'd been assigned.
Wednesday morning, they didn't happen either.
Wednesday night I was still afraid of the damn things and now they were safely buried under a pile of other things. On the plus side, I did get a bunch of other housework done in the process of running away from the exercises. Frustrated with myself, I finally asked Max for help. (Thanks Autumn for the reminder that I could do that)
Thursday morning I continued to avoid them in the name of "getting ready for work."
Thursday evening I dodged them again in the name of "getting ready for Grind." (Grind was nice by the way. I had a couple people I'd never met before come up and talk to me about the x-rays I posted. I danced a fair bit. I got some extra encouraging PT words from a very attractive friend. I snuggled with Russell and groped Kaylee a little.)
After Grind though I was very aware that some part of my brain was still keeping score of the PT avoidance and making sure I knew what a bad person I was. Fortunately Kaylee snuggles are extra good medicine for that kind of thing.
This morning I had other pleasant distractions and valid reasons to keep avoiding the exercises before work.
This evening Max sent me an email that was mostly about something else but with a little direct sentence about dropping him a line when I finished my PT.
Ding! All of a sudden I was willing to push away most of the other reasons not to start.
I didn't jump up and do them right away after finishing my typical come-home routine. There was a good 30 minutes of futzing and prepping and rearranging and... Eventually, I was alone in my bedroom with the door closed so no one could see my mistakes. And then... I started. By the time I was doing the last couple exercises I wasn't fighting myself so hard. I was just doing it. The trick now is to not think about whether I'll do them tomorrow. Tonight I just want to announce: I FINALLY did it! I deserve a cookie! (Conveniently, there was a bake sale at work today so I've already had my cookie fix)
Wednesday morning, they didn't happen either.
Wednesday night I was still afraid of the damn things and now they were safely buried under a pile of other things. On the plus side, I did get a bunch of other housework done in the process of running away from the exercises. Frustrated with myself, I finally asked Max for help. (Thanks Autumn for the reminder that I could do that)
Thursday morning I continued to avoid them in the name of "getting ready for work."
Thursday evening I dodged them again in the name of "getting ready for Grind." (Grind was nice by the way. I had a couple people I'd never met before come up and talk to me about the x-rays I posted. I danced a fair bit. I got some extra encouraging PT words from a very attractive friend. I snuggled with Russell and groped Kaylee a little.)
After Grind though I was very aware that some part of my brain was still keeping score of the PT avoidance and making sure I knew what a bad person I was. Fortunately Kaylee snuggles are extra good medicine for that kind of thing.
This morning I had other pleasant distractions and valid reasons to keep avoiding the exercises before work.
This evening Max sent me an email that was mostly about something else but with a little direct sentence about dropping him a line when I finished my PT.
Ding! All of a sudden I was willing to push away most of the other reasons not to start.
I didn't jump up and do them right away after finishing my typical come-home routine. There was a good 30 minutes of futzing and prepping and rearranging and... Eventually, I was alone in my bedroom with the door closed so no one could see my mistakes. And then... I started. By the time I was doing the last couple exercises I wasn't fighting myself so hard. I was just doing it. The trick now is to not think about whether I'll do them tomorrow. Tonight I just want to announce: I FINALLY did it! I deserve a cookie! (Conveniently, there was a bake sale at work today so I've already had my cookie fix)
Thursday, October 16, 2008
Attitude Adjustment
Appreciation, Gratitude, and Happy Happenings:
(small note: There is so much fantastiness going on in my life that I'm not likely to remember all of everything I want to say. If you were part of some wonderfulness that did not get mentioned, please understand that it's likely because it's late and not because it wasn't as wonderful as everything else listed. k thanks)
(small note: There is so much fantastiness going on in my life that I'm not likely to remember all of everything I want to say. If you were part of some wonderfulness that did not get mentioned, please understand that it's likely because it's late and not because it wasn't as wonderful as everything else listed. k thanks)
- The obvious first order of gratitude is that there is so much to be thankful for I'm certain of my inability to record it all here tonight.
- The last two nights I've been able to share my bed with someone and feel skin touching my skin as I drift off to sleep.
- Russell: who is here nearly all the time, who never grumbles when I call him in from another room to move this thing or that thing 4 inches , who has an endless supply of head kisses for me, who does a very good job of being aware of and taking care of himself in all this too, who provides me with yogurt and eggos and tasty sandwiches, who reads me stories, who walks me around the block, who worries so quietly and cheers so loudly, who loves me very very deeply
- Autumn: who makes me cry (in the good way), who adjusts the world with a few words, who walks me to the bagel shop, who makes the tastiest pie ever,
- A.: who helps out all over the place, who shuttles laundry and clears tables, who watches movies and brings grapes, who can help to fix the stuff I'm not talking about without having to talk about it, who declares when it's time to feel accomplished, who already understands why it's so important to be here on a Thursday night
- Max: who inspires perma-grin just by making contact, who washes loads of dishes, who reminds me this is all an investment he intends to collect in due time, who takes care of me, who tollerates my stubborn instistance on finding some service task I can still do, who gives me attainable goals, who does things that result in wet pillows, who also loves me
- Internet: fetlife, instant messaging, blogging, reaching out and finding people in some of the least expected places.
- FMLA sick-leave: feeling confident that I have the money to pay people back for grocery runs and rent, knowing that I will still have a job when I'm well enough to do it again
- I'm still getting better,
Monday, October 13, 2008
Another Recovery Landmark:
I POOPED!!!
Ok, I realize this is really more information than anyone wants, but for those of you considering this surgery, you need to fully comprehend what a HUGE deal this is. Today is the first day since September that I have pooped without the aid of chemicals. And yes, that liberated sensation that we all know about and no one talks about does still accompany the post surgery poo.
In other landmark news:
The first post-surgical load of laundry is done with the aid of two consecutive visitors today. I really enjoyed having both ladies over and welcome more visitors at this time. It seemed pretty obvious to both visitors when my stamina was gone and it was time to go, so no need to worry about keeping me up too long.
Ok, I realize this is really more information than anyone wants, but for those of you considering this surgery, you need to fully comprehend what a HUGE deal this is. Today is the first day since September that I have pooped without the aid of chemicals. And yes, that liberated sensation that we all know about and no one talks about does still accompany the post surgery poo.
In other landmark news:
The first post-surgical load of laundry is done with the aid of two consecutive visitors today. I really enjoyed having both ladies over and welcome more visitors at this time. It seemed pretty obvious to both visitors when my stamina was gone and it was time to go, so no need to worry about keeping me up too long.
Sunday, October 5, 2008
progress with some challenges
(still Russell)
She's able to get all the way from prone to sitting up on her own, and from there to standing with just a little help arranging her walker. She's able to get to the bathroom and back with minimal assistance. I've been told that this morning she was able to walk with Max all the way to the elevators and back!
I've been reading everyone's comments to her and she's been very happy to hear them (and I bet ready to hold a computer herself tomorrow). We've had a bunch of people who've been wonderful coming in and helping take care of her. Her mom came in Saturday morning, V spent all last night here, Puck relieved her this morning, A. visited at some point today, both her dad and Autumn were here much of the afternoon, and of course Kaylee and Max have also been here a ton.
Wednesday, October 1, 2008
More Details
(Russell again)
We're back from food, but she's not in her room yet. The guess was that she'd be out of recovery somewhere in the 7:30-8:30 range, so we're good. I think the plan is that we see her installed, then Max and her mom head to their respective homes, and Kaylee or I spend the night curled up in her window-seat. We'll then rotate around over the next few days, (and I'll make sure to let people know when she's well enough for more visitors).
Surgery went an hour or two longer than they'd expected- her thoraco-lumbar curve corrected to about 24 degrees (from 57), and they had to balance that out in her thoracic curve so as to keep her shoulders even and lined up above her hips. I gather that was a pretty fiddly process to get just right. We've been told she'll be more or less unrecognizably puffy when we see her- being face-down for so long means that there's been a lot of fluid pooling. I'm going to be really happy to see her, though.
Tuesday, September 30, 2008
Prayer Request
Hi folks,
This time tomorrow I'll be at the beginning of the next stage of this journey. Russell will be updating the blog while I'm getting the ability to type and read back. Please keep me in your prayers and good thoughts (however you connect to spirit and good). Here are some of the things I'm inviting into this journey if you want to help more specifically.
This time tomorrow I'll be at the beginning of the next stage of this journey. Russell will be updating the blog while I'm getting the ability to type and read back. Please keep me in your prayers and good thoughts (however you connect to spirit and good). Here are some of the things I'm inviting into this journey if you want to help more specifically.
- Countless opportunities to appreciate the humor, strength, generosity, kindness and love of my amazing family and friends
- Amazement in the human mind and body's ability to heal and adapt
- Moments of pride for excelling at tasks once thought too hard to attempt
- Fast and clean healing of the tissue on my back that leads to continued strength and flexibility for years to come
- A stable and healthy spine that gives me the structural support needed to feel sound and grounded.
- Commitment to continuing to take care of my body
- A surplus of financial resources to meet my obligations
- A surgery and recovery that goes smoother than anyone could reasonably predict
Monday, September 8, 2008
Are you ok talking about this?
"Are you ok talking about this?" Several friends asked me this question last night. Almost apologetically, they ask for the details of my surgery and recovery. They are curious but don't want to overstep or stir-up more anxiety. "Hell, I blog about this stuff…" I reply in an almost dismissive tone. It occurs to me to ask if they are ok listening to me talk about this. I watch the way I rattle off the median statistics for a healthy adult's progression through surgery and recovery. Am I presenting as too detached? I certainly am anxious, but talking about it or not talking about it doesn't seem to make much difference.
The funny thing is most of these friends have just returned from Burning Man. While the two experiences don't directly compare the way we tell stories about them is remarkably similar. The month before the event, we simply can't avoid talking about it: when do you leave? what are you doing to get ready? do you have enough help? what are you expecting? what are the risks? how long are you going to be gone? why in the hell do you think this is a good idea again? Then we're gone, incommunicado, for about a week. We try to document the experience while its happening, but we know there's really not any way to convey this experience to people who aren't there with you. We come back, dazed and a little incapacitated for a while but full of stories to tell about hardships and triumphs and ridiculously stupid things we did. The big difference here… I don't plan to start this game up again next year.
Lately I'm trying to be more aware of the kinds of stories I'm telling about my future. I don't want to set up unreasonable expectations, but also want to avoid giving too much voice and energy to the worst-case scenarios. It's a surprisingly delicate line to walk. It's not going to happen, but what if it does? How do I stay optimistic and centered while still preparing for the worst? It's not necessary to ask "What could possibly go wrong?" so often. (Anyone who watches Joss Wheadon television knows that's a HORRIBLE question to start an episode.) The thing about story telling is when those questions get asked, the universe feels compelled to answer them clearly. I guess the best thing I can do is speak to the giant pile of resources and circumstances I already have lined up in my favor.
These are the stories I want to spend the most time telling over the next couple weeks:
The funny thing is most of these friends have just returned from Burning Man. While the two experiences don't directly compare the way we tell stories about them is remarkably similar. The month before the event, we simply can't avoid talking about it: when do you leave? what are you doing to get ready? do you have enough help? what are you expecting? what are the risks? how long are you going to be gone? why in the hell do you think this is a good idea again? Then we're gone, incommunicado, for about a week. We try to document the experience while its happening, but we know there's really not any way to convey this experience to people who aren't there with you. We come back, dazed and a little incapacitated for a while but full of stories to tell about hardships and triumphs and ridiculously stupid things we did. The big difference here… I don't plan to start this game up again next year.
Lately I'm trying to be more aware of the kinds of stories I'm telling about my future. I don't want to set up unreasonable expectations, but also want to avoid giving too much voice and energy to the worst-case scenarios. It's a surprisingly delicate line to walk. It's not going to happen, but what if it does? How do I stay optimistic and centered while still preparing for the worst? It's not necessary to ask "What could possibly go wrong?" so often. (Anyone who watches Joss Wheadon television knows that's a HORRIBLE question to start an episode.) The thing about story telling is when those questions get asked, the universe feels compelled to answer them clearly. I guess the best thing I can do is speak to the giant pile of resources and circumstances I already have lined up in my favor.
These are the stories I want to spend the most time telling over the next couple weeks:
- Russell, Kaylee, Max, my parents, my coworkers, and a wealth of extended chosen family are all standing strong beside me.
- I have a fantastic lead surgeon with a spectacular assistant surgeon all part of one of the area's premier orthopedic groups.
- I'll be having the surgery at a new hospital purpose-built for orthopedics.
- My body is young and healthy.
- The hospital is close to home (as in a matter of blocks) so even recovery check-up visits will be easier than many people have it.
- There are two remarkably comfortable beds in my home.
- I have a laptop and wireless internet so I don't have to feel so isolated.
- I have a fantastic health-plan and work for an incredibly supportive organization.
- I am generally self-aware and practiced at spotting unhealthy patterns and asking for the help I need to correct them.
- My partners have partners to lean on and places to go when things are challenging at home.
- While I still don't like or seek out pain, I have a much better understanding of how to process it than I would have 10 years ago.
- Most of all though, I know I am loved; that right there is going to make all the difference in the world.
Saturday, September 6, 2008
It started
Apparently, the threshold for surgery worries invading my dreams has finally been crossed. The most stressful part of last night's dream was the large number of school-aged children (relatives of some sort) roaming about needing attention and reassurance. Well, that and my inability to figure out how to get into the crocheted afghan/sleeping bag on my gurney or whether to lie face up or face down. I think Russell needs a bigger blanket on his new bed. :)
I'm quickly reaching the point where there's noting left to do but watch the surgery date approach like a freight train. I've been coping these last couple weeks (and this weekend) by busying myself with schedules and to-do lists, but those are both running out of space pretty quickly. My conscious awareness may be finding these kinds of activities helpful, but the sub-conscious mind in charge of body functions is not fooled. It's already calling for preparations. While I haven't significantly changed my eating or activity habits, I'm storing more fat and gaining weight. My body temp, which usually runs at a cool 97.9, has been slowly but steadily increasing over the last week. It was at 99.0 when I went in to donate blood yesterday although I'm not feeling particularly ill. I'm trying to pace myself, have some quiet time, stop fixating. I think I'm going to need more reminders and external support on this goal next week. Fortunately, I have a community of friends and family capable of doing just that.
I'm quickly reaching the point where there's noting left to do but watch the surgery date approach like a freight train. I've been coping these last couple weeks (and this weekend) by busying myself with schedules and to-do lists, but those are both running out of space pretty quickly. My conscious awareness may be finding these kinds of activities helpful, but the sub-conscious mind in charge of body functions is not fooled. It's already calling for preparations. While I haven't significantly changed my eating or activity habits, I'm storing more fat and gaining weight. My body temp, which usually runs at a cool 97.9, has been slowly but steadily increasing over the last week. It was at 99.0 when I went in to donate blood yesterday although I'm not feeling particularly ill. I'm trying to pace myself, have some quiet time, stop fixating. I think I'm going to need more reminders and external support on this goal next week. Fortunately, I have a community of friends and family capable of doing just that.
Wednesday, September 3, 2008
Gratitudes!
Time to toss out a list of things I'm really grateful for (in stream of consciousness order):
- Making it through the one-month count-down mark without panicking.
- Finding the exact shoes I'd searched 4 Target stores to find at Value Village... in good shape, on 50% off everything day.
- Piles and piles of quality moments with Russell.
- I'm extra super grateful for Russell in general.
- Taking Paige and Russell to visit my mom in my home town and spontaneously getting to introduce them to some of my old-school extended family (My mom took care of her in college, she babysat me, I babysat her daughter--who graduated college recently GAWD I'M OLD, and every year we still take cookies to their house at Christmas)
- Supportive--if sometimes a little stress inducing--comments from my coworkers.
- Having a seriously relaxed couple days at work recovering from the busy season.
- Easy on-line booking systems for the only nice campground I know about (yes, I know, some tree-hugger I am... but I like to visit trees, not take up residence with them)
- Spready Cheese on crackers (Russell who brings them to me)
- The guy at Quiznos who always gives me the discount price even though I order the wrong ingredients on my sandwich.
- Aleive that knocks out my cramps.
- Happy news from a redhead about to start school at Mt. Holyoke
- Paigelett now has extra time in her schedule
- Friends and Family (including Paige, Russell, and Max) who make time in their schedules to be with me even when they don't really have it.
- A mid-day massage appointment.
- The brand new extra comfy bed in Russell's bedroom (even if it isn't the one I'm sleeping on tonight)
- Having my own blog to occasionally fill with a pile of random happiness
Monday, September 1, 2008
All This and Better Please
Posted to LJ on: Apr. 18th, 2008 at 4:21 PM
A lovely and wise friend reminded me to let spirit in on this whole support structure thing. As such I'm going to list some of the best possible outcomes of this surgery so we can keep them in focus and help them happen.
A lovely and wise friend reminded me to let spirit in on this whole support structure thing. As such I'm going to list some of the best possible outcomes of this surgery so we can keep them in focus and help them happen.
- Countless opportunities to appreciate the humor, strength, generosity, kindness and love of my amazing family and friends
- Amazement in the human mind and body's ability to heal and adapt
- Moments of pride for excelling at tasks once thought too hard to attempt
- Fast and clean healing of the tissue on my back
- A stable and healthy spine
- Commitment to continuing to take care of my body
- A surplus of financial resources to meet my obligations
- A surgery and recovery that goes smoother than anyone could reasonably predict
Tuesday, July 29, 2008
Jay Williams 2-in-1
Posted to LJ on: Jun. 5th, 2008 at 7:58 AM
The appointment I made for June 20th has been moved to today at 2:15. Russell and Max will be going in with me (can I even begin to talk about how blessed I am?).
I don't have my book right now so I'm glad I made notes in LJ earlier about the things I need to ask my surgeon.
Ok now I have 10 minutes to get out the door so I can go work distractedly for a few hours. I had an unexpectedly late night last night. Not bad, just schedule-altering.
Feeling: Loved but Rattled
Posted to LJ on: Jun. 5th, 2008 at 4:06 PM
The rescheduled appointment today went really well.
Things moved quickly and on time (I don't remember the last scoliosis appointment that took less than 2 hours from car door to car door).
My entourage and I asked good questions.
My surgeon and his nurse gave good answers.
As soon as the last major round of questions was done, I felt like I'd hit a wall and just wanted to curl up and take a nap (yay adrenaline crash).
The surgery will be on October 1st arriving at 5:40 AM (who needs anesthesia if you don't bother to wake up?) at Swedish Hospital's new orthopedic building. All other schedules will work backwards from this date.
The appointment I made for June 20th has been moved to today at 2:15. Russell and Max will be going in with me (can I even begin to talk about how blessed I am?).
I don't have my book right now so I'm glad I made notes in LJ earlier about the things I need to ask my surgeon.
Ok now I have 10 minutes to get out the door so I can go work distractedly for a few hours. I had an unexpectedly late night last night. Not bad, just schedule-altering.
Feeling: Loved but Rattled
Posted to LJ on: Jun. 5th, 2008 at 4:06 PM
The rescheduled appointment today went really well.
Things moved quickly and on time (I don't remember the last scoliosis appointment that took less than 2 hours from car door to car door).
My entourage and I asked good questions.
My surgeon and his nurse gave good answers.
As soon as the last major round of questions was done, I felt like I'd hit a wall and just wanted to curl up and take a nap (yay adrenaline crash).
The surgery will be on October 1st arriving at 5:40 AM (who needs anesthesia if you don't bother to wake up?) at Swedish Hospital's new orthopedic building. All other schedules will work backwards from this date.
Monday, July 28, 2008
Porn Should Not Make You Cry
Posted to LJ on: May. 25th, 2008 at 10:14 AM
Here's the gist of a post I made on a friend's D/s discussion board:
Earlier this week I stopped in at Wild at Heart and picked up a book that had some promise. He's on Top edited by Rachel Kramer Bussel
Anyway, I finally got around to reading some of the stories this weekend and let me just say this book should come with a warning label. Most of the stories are well written (if a little tame for my reading tastes). But last night I stumbled upon the story "The Sun Is an Ordinary Star" by Shanna Germain. It starts off giving credence to the fact that it's in a collection of erotic fiction, but then blind sides the reader.
After the narrator finishes his flashback prompted by finding a pair of nipple clamps under the bed, he tells us about his wife's battle with breast cancer and we come to understand that he's about to pick her up from the hospital after her lumpectomy. The rest of the story recounts his big stupid guy mistake. He treats his wife like she's this fragile form that can be barely touched and certainly not capable of withstanding their previous sexual activities. This of course brings much frustration to both parties. In a moment of desperation she says "I need you to stop fucking me like I'm dying, I'm not dying. But every time you touch me soft, every time you ask if I'm okay, another little piece of me falls off." Then the author gives us 1/2 a page of "resolution" in which the narrator finds his gonads again and is determined to top his wife.
The more investment a person has in caring for his or her partner, the riskier our kinky D/s activities feel. I'm one of the luckiest girls I know--I have a primary partner with whom I can share my life, I have a dominant partner who truly understands what my submission is all about, I have a primary girlfriend who gets my top-juices flowing like no other and then goes shopping with me afterwards, and I have a whole community of friends who are there every time I reach out my hand. None of that changes the fact that I'm positively scared out of my whits of finding myself in the position described in the story above. What it does change is my belief about what will happen if I do find myself there. Things will work out. We're all strong smart people and none of us will stop loving one another.
Here's the gist of a post I made on a friend's D/s discussion board:
Earlier this week I stopped in at Wild at Heart and picked up a book that had some promise. He's on Top edited by Rachel Kramer Bussel
Anyway, I finally got around to reading some of the stories this weekend and let me just say this book should come with a warning label. Most of the stories are well written (if a little tame for my reading tastes). But last night I stumbled upon the story "The Sun Is an Ordinary Star" by Shanna Germain. It starts off giving credence to the fact that it's in a collection of erotic fiction, but then blind sides the reader.
After the narrator finishes his flashback prompted by finding a pair of nipple clamps under the bed, he tells us about his wife's battle with breast cancer and we come to understand that he's about to pick her up from the hospital after her lumpectomy. The rest of the story recounts his big stupid guy mistake. He treats his wife like she's this fragile form that can be barely touched and certainly not capable of withstanding their previous sexual activities. This of course brings much frustration to both parties. In a moment of desperation she says "I need you to stop fucking me like I'm dying, I'm not dying. But every time you touch me soft, every time you ask if I'm okay, another little piece of me falls off." Then the author gives us 1/2 a page of "resolution" in which the narrator finds his gonads again and is determined to top his wife.
The more investment a person has in caring for his or her partner, the riskier our kinky D/s activities feel. I'm one of the luckiest girls I know--I have a primary partner with whom I can share my life, I have a dominant partner who truly understands what my submission is all about, I have a primary girlfriend who gets my top-juices flowing like no other and then goes shopping with me afterwards, and I have a whole community of friends who are there every time I reach out my hand. None of that changes the fact that I'm positively scared out of my whits of finding myself in the position described in the story above. What it does change is my belief about what will happen if I do find myself there. Things will work out. We're all strong smart people and none of us will stop loving one another.
Full Circle
Posted to LJ on: May. 20th, 2008 at 10:48 PM
I'll be having my next scoliosis appointment with the surgeon who started this whole thing a year ago. I got to this decision by way of eliminating unacceptable options and talking to a variety of people with immediate experience of spinal surgery and/or the hospitals in question. Let me just mention again how fucking incredible my network of support around this is.
There's been enough dinking around looking for other options or other answers. He may act a bit like a car salesman, but he's saying the same things everyone else says independently and seems very well respected and has access to a qualified team of peers should he need assistance. I'm committed to sticking with him (and his team) through the rest of this journey.
The next appointment won't be until June 20th.
I'll be having my next scoliosis appointment with the surgeon who started this whole thing a year ago. I got to this decision by way of eliminating unacceptable options and talking to a variety of people with immediate experience of spinal surgery and/or the hospitals in question. Let me just mention again how fucking incredible my network of support around this is.
There's been enough dinking around looking for other options or other answers. He may act a bit like a car salesman, but he's saying the same things everyone else says independently and seems very well respected and has access to a qualified team of peers should he need assistance. I'm committed to sticking with him (and his team) through the rest of this journey.
The next appointment won't be until June 20th.
Sunday, July 20, 2008
Three book posts in one
I'm posting all of my book notes in one update.
Posted to LJ on Apr. 14th, Apr. 16th, and Apr. 18th, 2008
The Scoliosis surgery book arrived today. I sat down and read the first 88 pages at once. This might not seem like much until you note that I have a reading disability and reading that many pages in one 3-hour sitting is almost unheard of. Granted we're not talking graduate level text here, but I'm still pretty damned impressed with myself.
Take-aways from the first half of the book:
I can actually tell you where the pedicle is on a vertebra (important because thats where the attachment screws go in)
I can use fancy words like "progressive juvenile-onset double-major curvature" to describe my back.
I can be relieved that the majority of the rotation in my scoliosis occurs in the thoracolumbar curve and is less likely to cause cardiopulmonary problems.
I remember how "Cobb angles" are measured
I realized no one has ever bothered to describe the rotation of my thoracolumbar curve on the typical scale
I have all of the indications for scoliosis surgery and none of the contraindications.
Bone grafting is messy and bloody
Posterior approach surgery makes the most sense even if it does have the longest scar
That Dr. OLD feels confident enough in his ability to do the surgery entirely with pedicle screws gives me more confidence in him.
I want to remember to ask about short segment bone-on-bone techniques (bolded for quick reference) With the extent of my curve it might not be possible, but the potential benefits are worth checking on at least. "Compared to traditional posterior and anterior approach surgeries, the primary benefit of B-on-B is that typically about half as many vertebrae are instrumented , leaving more vertebrae and discs mobile. The level of correction obtained with this technique can rival (or exced) what is typically achieved using traditional surgical approaches."
I want to remember to ask where the surgeon plans to get material for bone grafting. Autografting from rib or iliac crest? Allografting from the bone-bank? DBM, BMP?
Need to exercise my lungs to prevent pneumonia post surgery.
Look up the video Yoga for Scoliosis with Elise Browning Miller
Choosing a Surgeon:
He strongly suggests establishing a system for keeping notes. At first I was thinking I was late to the game on this, then I realized I have a great system and I'm already using it. Right here.
Dr. Wagner's Scoliosis Research Society membership is a big plus in this book.
I haven't really talked to other patients. The book made it sound like I could ask the surgeons for patient references. It seems like something HIPPA would not promote, but might be worth asking I guess.
Evaluating Opinions:
Ask every surgeon these questions:
Magnitude of the curves (Cobb angle)
Which levels to fuse and why
Surgical approach to use and why
Best estimate of correction achievable
How many similar cases have you worked on?
Unusual complications or risks in my case
Dr. Old and Dr. Car-salesman were identical in their answers to any of the above questions we addressed
Paying for Surgery:
Total costs range from $75,000 to $300,000
Even when estimating the out of pocket expenses things can get tricky. Insurance may not cover: the whole surgical team (assistant surgeons, special anesthesiologist), preferred hardware, synthetic bone grafting stuff, preferred physical therapist
Expenses related to treatment not covered by insurance can be tax deductible if they exceed 7.5% of my gross income.
Establishing a Support System:
I'll be looking for several different kinds of support:
Emotional--not just talking about feelings, but cheering me on and kicking me in the pants as needed
Logistical--bringing stuff in, taking stuff out, cleaning stuff up
Physical--getting me up and moving
Familial--getting my family out and doing self-care
Preparing for Surgery:
Relaxation techniques--check
Preoperative Exercise and Nutrition--coming back to this
I need to work out how to take my existing meds while in the hospital
Need to get dentist and gyn exams done before surgery
No SM stuff on my back that won't be completely healed before surgery
Get a haircut ('cause those chairs and shampoo sinks aren't so comfortable post surgery)
Shave my legs (Ha!)
There are also lists of things to ask the surgeon on the last consultation, and stuff to pack with me.
The Hospital Experience from Admission to Discharge:
Relevant information this far ahead:
Looking at about 5-7 days in the hospital
Probably 24 hours in ICU
Not likely to be up for casual visitors until day 3 or 4
The recovery chapter:
3 weeks is the magic number
More moving=healing faster
Weight loss is expected because your body draws from the energy stored in fat for healing
Menstrual problems (oh fun)
A Getting your house and life in order:
Stuff I can do soon:
Purchase extension cords with switches for bedside lamps (possibly get a second bedside lamp)
Purchase a small electric blanket (can't have the heated mattress pad because of direct heat on the incision)
Purchase a nice breakfast in bed tray
More yoga pants
Posted to LJ on Apr. 14th, Apr. 16th, and Apr. 18th, 2008
The Scoliosis surgery book arrived today. I sat down and read the first 88 pages at once. This might not seem like much until you note that I have a reading disability and reading that many pages in one 3-hour sitting is almost unheard of. Granted we're not talking graduate level text here, but I'm still pretty damned impressed with myself.
Take-aways from the first half of the book:
I can actually tell you where the pedicle is on a vertebra (important because thats where the attachment screws go in)
I can use fancy words like "progressive juvenile-onset double-major curvature" to describe my back.
I can be relieved that the majority of the rotation in my scoliosis occurs in the thoracolumbar curve and is less likely to cause cardiopulmonary problems.
I remember how "Cobb angles" are measured
I realized no one has ever bothered to describe the rotation of my thoracolumbar curve on the typical scale
I have all of the indications for scoliosis surgery and none of the contraindications.
Bone grafting is messy and bloody
Posterior approach surgery makes the most sense even if it does have the longest scar
That Dr. OLD feels confident enough in his ability to do the surgery entirely with pedicle screws gives me more confidence in him.
I want to remember to ask about short segment bone-on-bone techniques (bolded for quick reference) With the extent of my curve it might not be possible, but the potential benefits are worth checking on at least. "Compared to traditional posterior and anterior approach surgeries, the primary benefit of B-on-B is that typically about half as many vertebrae are instrumented , leaving more vertebrae and discs mobile. The level of correction obtained with this technique can rival (or exced) what is typically achieved using traditional surgical approaches."
I want to remember to ask where the surgeon plans to get material for bone grafting. Autografting from rib or iliac crest? Allografting from the bone-bank? DBM, BMP?
Need to exercise my lungs to prevent pneumonia post surgery.
Look up the video Yoga for Scoliosis with Elise Browning Miller
Choosing a Surgeon:
He strongly suggests establishing a system for keeping notes. At first I was thinking I was late to the game on this, then I realized I have a great system and I'm already using it. Right here.
Dr. Wagner's Scoliosis Research Society membership is a big plus in this book.
I haven't really talked to other patients. The book made it sound like I could ask the surgeons for patient references. It seems like something HIPPA would not promote, but might be worth asking I guess.
Evaluating Opinions:
Ask every surgeon these questions:
Magnitude of the curves (Cobb angle)
Which levels to fuse and why
Surgical approach to use and why
Best estimate of correction achievable
How many similar cases have you worked on?
Unusual complications or risks in my case
Dr. Old and Dr. Car-salesman were identical in their answers to any of the above questions we addressed
Paying for Surgery:
Total costs range from $75,000 to $300,000
Even when estimating the out of pocket expenses things can get tricky. Insurance may not cover: the whole surgical team (assistant surgeons, special anesthesiologist), preferred hardware, synthetic bone grafting stuff, preferred physical therapist
Expenses related to treatment not covered by insurance can be tax deductible if they exceed 7.5% of my gross income.
Establishing a Support System:
I'll be looking for several different kinds of support:
Emotional--not just talking about feelings, but cheering me on and kicking me in the pants as needed
Logistical--bringing stuff in, taking stuff out, cleaning stuff up
Physical--getting me up and moving
Familial--getting my family out and doing self-care
Preparing for Surgery:
Relaxation techniques--check
Preoperative Exercise and Nutrition--coming back to this
I need to work out how to take my existing meds while in the hospital
Need to get dentist and gyn exams done before surgery
No SM stuff on my back that won't be completely healed before surgery
Get a haircut ('cause those chairs and shampoo sinks aren't so comfortable post surgery)
Shave my legs (Ha!)
There are also lists of things to ask the surgeon on the last consultation, and stuff to pack with me.
The Hospital Experience from Admission to Discharge:
Relevant information this far ahead:
Looking at about 5-7 days in the hospital
Probably 24 hours in ICU
Not likely to be up for casual visitors until day 3 or 4
The recovery chapter:
3 weeks is the magic number
More moving=healing faster
Weight loss is expected because your body draws from the energy stored in fat for healing
Menstrual problems (oh fun)
A Getting your house and life in order:
Stuff I can do soon:
Purchase extension cords with switches for bedside lamps (possibly get a second bedside lamp)
Purchase a small electric blanket (can't have the heated mattress pad because of direct heat on the incision)
Purchase a nice breakfast in bed tray
More yoga pants
Saturday, July 19, 2008
Dr Wagner
Posted to LJ on Apr. 8th, 2008 at 7:52 PM
Dr. Wagner is not cranky. OLD yes, cranky no.
Getting in to see him was a little akin to registering for classes at the U. Or at least as the UW registration experience is compared to the SMC registration experience. There were many more desks to stand at, repetitive forms to fill out, and gratuitous uses of computers. It wasn't particularly slow or even difficult to figure out, but it was much more complicated than walking in to a small clinic. Oh and once I got in the exam room there were like 9 different colored blinking lights that sent messages to the central control desk about my current status. Oh Oh and the X-ray machine was computer operated and reported its results out to some server so the doc could just log on to the computer in the exam room and find and draw on my films right there in front of me. (He was OLD but quite technically literate)
The results:
He said pretty much exactly what the last doc said. My case isn't exactly unique or noteworthy as scoliosis goes. My thoracolumbar (lower) curve is the most dramatic (bent and rotated), but the thoracic curve is clearly not just a compensation. If we only correct the lower curve there's a good chance I'll wind up looking more tilted than I do now. The surgery he described and the length of the fusion were the same as I heard before.
I did feel more comfortable with him than with Dr. Car-salesman. The UW clinic might be institutional, but at least they're up front and efficient about it. My only concern: Dr. Wagner is OLD, as in considerably less coordinated than his younger counterparts (he dropped stuff, knocked things over, and lost his train of thought during dictation several times). On the other hand, he's got TONS of experience. If something weird comes up chances are good he's already seen cases like it and will know what to do.
Where do I go from here?
The scoliosis surgery book shipped today so I'll probably spend quality time reading that with Russell over the next few weeks. Provided I don't learn anything new, I'll make calls to schedule surgery in the first week of May (call in May for surgery in October)
Dr. Wagner is not cranky. OLD yes, cranky no.
Getting in to see him was a little akin to registering for classes at the U. Or at least as the UW registration experience is compared to the SMC registration experience. There were many more desks to stand at, repetitive forms to fill out, and gratuitous uses of computers. It wasn't particularly slow or even difficult to figure out, but it was much more complicated than walking in to a small clinic. Oh and once I got in the exam room there were like 9 different colored blinking lights that sent messages to the central control desk about my current status. Oh Oh and the X-ray machine was computer operated and reported its results out to some server so the doc could just log on to the computer in the exam room and find and draw on my films right there in front of me. (He was OLD but quite technically literate)
The results:
He said pretty much exactly what the last doc said. My case isn't exactly unique or noteworthy as scoliosis goes. My thoracolumbar (lower) curve is the most dramatic (bent and rotated), but the thoracic curve is clearly not just a compensation. If we only correct the lower curve there's a good chance I'll wind up looking more tilted than I do now. The surgery he described and the length of the fusion were the same as I heard before.
I did feel more comfortable with him than with Dr. Car-salesman. The UW clinic might be institutional, but at least they're up front and efficient about it. My only concern: Dr. Wagner is OLD, as in considerably less coordinated than his younger counterparts (he dropped stuff, knocked things over, and lost his train of thought during dictation several times). On the other hand, he's got TONS of experience. If something weird comes up chances are good he's already seen cases like it and will know what to do.
Where do I go from here?
The scoliosis surgery book shipped today so I'll probably spend quality time reading that with Russell over the next few weeks. Provided I don't learn anything new, I'll make calls to schedule surgery in the first week of May (call in May for surgery in October)
Sunday, July 13, 2008
The Dramatis Personea
My Partners:
I also have an amazing network of friends and colleagues supporting me through this journey. I'm sure many of them will be mentioned before the year is over. Frankly, I can't conceive of a better, stronger safety-net to have in place as I take these first giant steps. They've all been amazing over the last 3 months while I finalized my decisions.
- Russell is my primary partner. We live together and do most of the traditional partnery things together. From pornographer to systems administrator, from DJ to taoist, he's an amazing boy and I'm very lucky to have him in my life.
- Kaylee is my girlfriend (She's also Russell's girlfriend both independently and as a triad). We have a fair number of things in common so we do a lot of straight-girl "girlfriend" things together in addition to our less platonic interactions. She really is the cutest thing ever and she's been here for me and with me for years. What a blessing to have a Girlfriend and a girlfriend all rolled in to one.
- Max is my dominant. Our connection is deep and goes beyond mere play-partners, but it's not a traditional romantic kind of thing. We both have independent lives outside of this relationship and respect and cherish that about each other. This is the kind of connection I searched for years to find. Every step of the journey was worth it to end up belonging to him.
- [Re-Edited: 9/29/10] Tony: Even though our paths didn't join until after the more dramatic parts of my surgery/recovery, Tony became a key part of my journey for a powerful year starting in May of 2009. It was a traditionally romantic relationship. There is something remarkable and refreshing about seeing yourself through the eyes of someone who is eagerly learning everything he possibly can about who you are and how you got that way. It is equally energizing to be the one learning in return. We taught each other many things and our paths diverged in May of 2010.
I also have an amazing network of friends and colleagues supporting me through this journey. I'm sure many of them will be mentioned before the year is over. Frankly, I can't conceive of a better, stronger safety-net to have in place as I take these first giant steps. They've all been amazing over the last 3 months while I finalized my decisions.
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