Showing posts with label neck. Show all posts
Showing posts with label neck. Show all posts
Thursday, July 22, 2010
Thursday, May 6, 2010
To Walk Again
Editor's Note: Before my surgery, I waddled like a duck. I shifted my weight from foot-to-foot and consciously used my abdominal muscles for balance (most folks are unconscious of this process). I couldn't travel more than half a block before the "creeping numbness" would hit my thighs, causing my right leg to collapse. In addition, a year before surgery, I had slowly stopped my regular exercise routine. For years, I walked 5-7 miles a day, swam 90 minute laps in an Olympic size pool, greeted the morning with tai chi, and ended the day with a yoga salutation to the moon. I use to say to folks, "I'm a fat girl, but a fit-fat girl." I had strange pride in the strength of my arms, the balance of my body, the purpose of my gait. When my arms started to shake after a swim and I could no longer leave the pool, I was heartbroken. When the numbness and coordination left my feet, and the pain of dystonias crippled my toes, Sugar was heartbroken ("What? No more long walks?") The worse thing, though? Being told by the docs eight months ago, "No more Yoga."
As I've said many times, occupational and physical therapy saved my life. (I also sent a huge "thank you" letter to my Yoga trainer-- as you'll see, 23 years of Yoga saved my ass. Literally.) You've already read the story about my left hand. I was willing to put up with horrific medical care if it meant that I could use my hands, relearn to walk, and regain my balance. Relearning to walk means retraining the brain. For me, it had very little to do with my legs. It is a long, intense, fascinating process. I've split the journal entries about walking into 3 parts.
Part One
We are dancing. A tall, strong, beautiful Austrian with a gentle mouth and analytical eyes is holding my arms, encouraging my sway. Back-and-forth. One foot. Another foot. Movement forwards, movement backwards. I feel my butt contract, and my abdominal muscles are pulling and pushing my body. It's a conscious move, and reminds me of strength built through years of Yoga and Tai Chi. I am centered and focused on the "moment." To know my body can still move, that there is still strength in some muscles? Wonderful. I have no idea if my legs are moving, and I don't care. I can not feel my feet, and my brain is convinced they are turned outwards, inwards or missing altogether. I suddenly worry and lose my focus. Are my feet even there? I turn slightly to my right and try to see them in the mirror. I stop. I don't want to know what they are doing. I'm not ready for that reality. But the numbness doesn't creep up my legs, and the soft swaying reminds me of a dance. A waltz. Who else but an Austrian could teach this former "twirling white girl at a Grateful Dead concert" to actually dance one of the most beautiful, graceful movements in the world? The music in my head aids my concentration, and I hear the first encouraging words since my surgery: "Good job, beautiful."
"Do you want to lift your legs, try to walk?"
The Austrian is smiling, encouraging my progress. My arms are weak, shaking. I can not feel the floor and my hands lose their grip on the parallel bars. The pain in my shoulders is excruciating. The muscle spasms in my back continue to crawl along my spine, and they (those damn spasms are not a piece of me, they are a separate entity with their own agenda) try to interrupt my progress. I imagine (briefly) chopping my arms off. Anything to relieve the pain. In the end, I don't care. I tuck in my butt-- suck in my gut-- take a deep belly breath-- and lift my right leg. I feel strong, Part of a dance. Confident. A second physical therapist is holding my other side, helping me balance on the bars. A third therapist is following us in a wheelchair. All I see is an end point, a chair at the end of the bars. Waiting. Eight simple steps. I start to sweat, shake and slow down-- but, I stay focused on the chair. I feel the slight movement of my abdominal muscles. The contraction of my butt. I consciously relax, hit my meditation pose, and remain focused on my goal. The chair is 3 steps away, and I have not stopped my dance. I smile.
"Do you want to try and turn around, before sitting?"
I am ecstatic. Who knew that you could learn to walk without feeling your legs? My brain has just learned that my abdominal and butt muscles can trigger a step, keep my balance, unlock my knees. Granted. I would have preferred to feel the floor on my feet, the push of my legs. Before we had started the dance, I had stomped my feet to test the sensation, and I felt no reverberation. Nothing. I suspect the stomping was more of a trigger for the brain, a remembrance of my former (non-waddled) gait.
I start to turn, and I feel the support of the team as they help me keep my balance.
I wake-up in bed. My face is wet, I'm confused, I'm tired. Damn. Another seizure. I grin, though. I laugh. For the first time in almost a year, I did not waddle like a duck. I walked.
ZEN
As I've said many times, occupational and physical therapy saved my life. (I also sent a huge "thank you" letter to my Yoga trainer-- as you'll see, 23 years of Yoga saved my ass. Literally.) You've already read the story about my left hand. I was willing to put up with horrific medical care if it meant that I could use my hands, relearn to walk, and regain my balance. Relearning to walk means retraining the brain. For me, it had very little to do with my legs. It is a long, intense, fascinating process. I've split the journal entries about walking into 3 parts.
Part One
We are dancing. A tall, strong, beautiful Austrian with a gentle mouth and analytical eyes is holding my arms, encouraging my sway. Back-and-forth. One foot. Another foot. Movement forwards, movement backwards. I feel my butt contract, and my abdominal muscles are pulling and pushing my body. It's a conscious move, and reminds me of strength built through years of Yoga and Tai Chi. I am centered and focused on the "moment." To know my body can still move, that there is still strength in some muscles? Wonderful. I have no idea if my legs are moving, and I don't care. I can not feel my feet, and my brain is convinced they are turned outwards, inwards or missing altogether. I suddenly worry and lose my focus. Are my feet even there? I turn slightly to my right and try to see them in the mirror. I stop. I don't want to know what they are doing. I'm not ready for that reality. But the numbness doesn't creep up my legs, and the soft swaying reminds me of a dance. A waltz. Who else but an Austrian could teach this former "twirling white girl at a Grateful Dead concert" to actually dance one of the most beautiful, graceful movements in the world? The music in my head aids my concentration, and I hear the first encouraging words since my surgery: "Good job, beautiful."
"Do you want to lift your legs, try to walk?"
The Austrian is smiling, encouraging my progress. My arms are weak, shaking. I can not feel the floor and my hands lose their grip on the parallel bars. The pain in my shoulders is excruciating. The muscle spasms in my back continue to crawl along my spine, and they (those damn spasms are not a piece of me, they are a separate entity with their own agenda) try to interrupt my progress. I imagine (briefly) chopping my arms off. Anything to relieve the pain. In the end, I don't care. I tuck in my butt-- suck in my gut-- take a deep belly breath-- and lift my right leg. I feel strong, Part of a dance. Confident. A second physical therapist is holding my other side, helping me balance on the bars. A third therapist is following us in a wheelchair. All I see is an end point, a chair at the end of the bars. Waiting. Eight simple steps. I start to sweat, shake and slow down-- but, I stay focused on the chair. I feel the slight movement of my abdominal muscles. The contraction of my butt. I consciously relax, hit my meditation pose, and remain focused on my goal. The chair is 3 steps away, and I have not stopped my dance. I smile.
"Do you want to try and turn around, before sitting?"
I am ecstatic. Who knew that you could learn to walk without feeling your legs? My brain has just learned that my abdominal and butt muscles can trigger a step, keep my balance, unlock my knees. Granted. I would have preferred to feel the floor on my feet, the push of my legs. Before we had started the dance, I had stomped my feet to test the sensation, and I felt no reverberation. Nothing. I suspect the stomping was more of a trigger for the brain, a remembrance of my former (non-waddled) gait.
I start to turn, and I feel the support of the team as they help me keep my balance.
I wake-up in bed. My face is wet, I'm confused, I'm tired. Damn. Another seizure. I grin, though. I laugh. For the first time in almost a year, I did not waddle like a duck. I walked.
ZEN
Saturday, May 1, 2010
Before the journey begins
CL here, prepping for the upcoming upload, while recovering from (yet another) fall because my silly brain won't cooperate with my body...(sigh)...have I mentioned lately that seizures and wobbly legs truly suck?
Anyhow, I've been trying to give my Kaiser Vallejo rehab experience some perspective-- maybe, over time, things will look different. The problem? They look worse. I know I was a difficult patient-- I was sad, grieving, in constant debilitating pain, and trying to make the best out of a bad situation by keeping a "stoic" outlook. Plus, I threw the medical folks (nurses and doctors) for a loop. They were hopelessly unprepared for anything that fell out of the Spinal Cord Injury (SCI) "normal" realm-- especially rare autoimmune diseases and central nervous system disorders. They tended to ignore non-SCI issues, or slap a band-aid on anything that got severe enough to trigger more SCI problems. Having seizures 2-3 times a day? Never happened as frequently, before surgery? First, deny that they were "real" seizures (apparently, "grand mal seizures are the only ones that count"-- yep, a direct quote from one of the nurses). Most of the nurses refused to chart the incidents until roommates, physical therapists and other patients said "hey! that's a seizure!" when I "faded out" (I lose time and memory, so I have no idea when I have them unless someone notices something or Sugar sounds an alarm). On my second day in rehab, the physical therapist noticed a 10 minute complex partial seizure that the nurses could not ignore. What did they do? They told the doctor, who then doubled the seizure meds without consulting my neurologist and letting me know about the change in my dosage! Again! (as you'll learn, the doc loved to change medications and dosages without telling me, first...fun times...not...) Oh, and it gets better...
Hmmm, gotta fever? Not too bad. Not severe enough to call the doctor. What? You have an autoimmune disease that causes fevers, and it will leave a rash with a distended belly, kidney failure and fluid in the lungs? Sure, we believe you. Maybe. Never heard of it before, although it's noted in your chart. Oh, what's that? You have a stomach ache, and believe you're starting an autoimmune reaction? It's probably acid reflux, nothing to worry about, you just need to lose weight. Nope, we don't need to read the Mayo Clinic notes on your disease. Huh? What's your problem, now? Hmmm, that's a HUGE rash on your belly. Maybe this is something we can't ignore. What? You need medicine right now, or it will get worse? Um, okay. Let me talk to the doctor. (20 HOURS LATER) Oh, yeah, doctor says we can start you on the autoimmune medicine. He doesn't need to speak with the specialist, he thinks he can treat it. (10 DAYS LATER) "The doctor spoke with your specialist this morning. Yeah, it's bad. We guess the autoimmune response made the SCI recovery more challenging. You should have said something, when it started..." (yes, uh huh, because it was ALL MY FAULT THAT THEY IGNORED ME).
I was willing to cut the medical folks some slack for not knowing how to recognize partial seizures, dystonias, and rare autoimmune diseases. I even cut the doc and nurses some slack for ignoring my heads-up ("um, hey, this is called an AUTOIMMUNE REACTION and it will get worse unless you give me my medication RIGHT NOW. It will even put me in autonomic dysreflexia and KILL ME, if you continue to ignore what's happening to my body"). I'm not willing to cut them slack for poor patient care and lack-of-response for SCI related incidents, however. I have an incomplete spinal cord injury in my neck. C4 Asia C is the official diagnosis. I have autonomic dysreflexia, bowel and bladder incontinence, and I can not stand or walk without assistance. Leaving me in the shower, unattended, for over 90 minutes? Unacceptable. Turning off the nurses' call light for the main station and not coming to help me go to the bathroom? Unacceptable. Not opening my meal containers because you have a "pinched nerve" in your neck? Really? Unacceptable. Leaving me in my urine soaked wheelchair for TWO HOURS and refusing to help me? Unacceptable. Falling out of bed, unable to call the nurse because they disconnected the call button-- and then refusing to come, when I yell for help in the middle of the night? Unacceptable. My favorite? The nurse doesn't like the ALARM sounding, every time my blood pressure reached the danger zone? She resented having to follow the autonomic dysreflexia protocol for someone who was "congested and just probably getting a cold?" (yep, another direct quote) Her response? Just TURN OFF the machine without recording the incredibly high numbers ("they are probably wrong, anyhow")-- and then tell the doctor, "there's nothing wrong with the patient" when she calls for an update. Seriously. Insane, unacceptable behavior.
I know I left rehab too early-- but, I wanted to leave. No matter how wonderful the physical and occupational therapy was, the medical team was going to kill me. Why? From what I can figure out, they seemed to think I wasn't "as bad as everyone else," "didn't really need to be there," and I "made things harder for the sicker patients" by "spending too much time talking to them and not minding (my) own business." Oh, and my favorite complaint about me? I was "too cheerful and social." Yes, smiling, saying "hello" and asking "how are you?" to other patients was discouraged by the nurses. Daily. Even the daytime nursing supervisor responded to my comments about my care by MOVING ME TO A DIFFERENT ROOM, so I was farther from the nurses station and couldn't overhear their "complaints about the difficult patient in room 3019B (me)."
Insane and unacceptable.
I was the patient. I was there to be cared for and treated in a safe environment. The physical and occupational therapy teams were awesome. The medical team needed to learn SCI treatment protocol, and the value of caring for patients as though they were a member of their own family. The frightening thing? I suspect some of the nurses actually treated their own family members like they treated me-- like dirt, something to be swept away and ignored. Some of the nurses were fabulous, and you'll read about them in my journal. They have a difficult, challenging job. The doc is one of the best SCI specialists in the country; but he was unwilling to examine anything outside of the SCI world that would impact my recovery, like painful autoimmune diseases and debilitating seizures. I learned to like him as a human being, and I learned to respect his amazing SCI knowledge. Now, if only he could see beyond the injury and view me as a human being. That was his challenge during my treatment and recovery.
Ah yes, memories...so, before I start uploading the journal, here's the daily moment of Zen:
The journal begins tomorrow, and the journey is ever-evolving...ciao! (and kisses from Sugar)
Hmmm, gotta fever? Not too bad. Not severe enough to call the doctor. What? You have an autoimmune disease that causes fevers, and it will leave a rash with a distended belly, kidney failure and fluid in the lungs? Sure, we believe you. Maybe. Never heard of it before, although it's noted in your chart. Oh, what's that? You have a stomach ache, and believe you're starting an autoimmune reaction? It's probably acid reflux, nothing to worry about, you just need to lose weight. Nope, we don't need to read the Mayo Clinic notes on your disease. Huh? What's your problem, now? Hmmm, that's a HUGE rash on your belly. Maybe this is something we can't ignore. What? You need medicine right now, or it will get worse? Um, okay. Let me talk to the doctor. (20 HOURS LATER) Oh, yeah, doctor says we can start you on the autoimmune medicine. He doesn't need to speak with the specialist, he thinks he can treat it. (10 DAYS LATER) "The doctor spoke with your specialist this morning. Yeah, it's bad. We guess the autoimmune response made the SCI recovery more challenging. You should have said something, when it started..." (yes, uh huh, because it was ALL MY FAULT THAT THEY IGNORED ME).
I was willing to cut the medical folks some slack for not knowing how to recognize partial seizures, dystonias, and rare autoimmune diseases. I even cut the doc and nurses some slack for ignoring my heads-up ("um, hey, this is called an AUTOIMMUNE REACTION and it will get worse unless you give me my medication RIGHT NOW. It will even put me in autonomic dysreflexia and KILL ME, if you continue to ignore what's happening to my body"). I'm not willing to cut them slack for poor patient care and lack-of-response for SCI related incidents, however. I have an incomplete spinal cord injury in my neck. C4 Asia C is the official diagnosis. I have autonomic dysreflexia, bowel and bladder incontinence, and I can not stand or walk without assistance. Leaving me in the shower, unattended, for over 90 minutes? Unacceptable. Turning off the nurses' call light for the main station and not coming to help me go to the bathroom? Unacceptable. Not opening my meal containers because you have a "pinched nerve" in your neck? Really? Unacceptable. Leaving me in my urine soaked wheelchair for TWO HOURS and refusing to help me? Unacceptable. Falling out of bed, unable to call the nurse because they disconnected the call button-- and then refusing to come, when I yell for help in the middle of the night? Unacceptable. My favorite? The nurse doesn't like the ALARM sounding, every time my blood pressure reached the danger zone? She resented having to follow the autonomic dysreflexia protocol for someone who was "congested and just probably getting a cold?" (yep, another direct quote) Her response? Just TURN OFF the machine without recording the incredibly high numbers ("they are probably wrong, anyhow")-- and then tell the doctor, "there's nothing wrong with the patient" when she calls for an update. Seriously. Insane, unacceptable behavior.
I know I left rehab too early-- but, I wanted to leave. No matter how wonderful the physical and occupational therapy was, the medical team was going to kill me. Why? From what I can figure out, they seemed to think I wasn't "as bad as everyone else," "didn't really need to be there," and I "made things harder for the sicker patients" by "spending too much time talking to them and not minding (my) own business." Oh, and my favorite complaint about me? I was "too cheerful and social." Yes, smiling, saying "hello" and asking "how are you?" to other patients was discouraged by the nurses. Daily. Even the daytime nursing supervisor responded to my comments about my care by MOVING ME TO A DIFFERENT ROOM, so I was farther from the nurses station and couldn't overhear their "complaints about the difficult patient in room 3019B (me)."
Insane and unacceptable.
I was the patient. I was there to be cared for and treated in a safe environment. The physical and occupational therapy teams were awesome. The medical team needed to learn SCI treatment protocol, and the value of caring for patients as though they were a member of their own family. The frightening thing? I suspect some of the nurses actually treated their own family members like they treated me-- like dirt, something to be swept away and ignored. Some of the nurses were fabulous, and you'll read about them in my journal. They have a difficult, challenging job. The doc is one of the best SCI specialists in the country; but he was unwilling to examine anything outside of the SCI world that would impact my recovery, like painful autoimmune diseases and debilitating seizures. I learned to like him as a human being, and I learned to respect his amazing SCI knowledge. Now, if only he could see beyond the injury and view me as a human being. That was his challenge during my treatment and recovery.
Ah yes, memories...so, before I start uploading the journal, here's the daily moment of Zen:
Sunday, April 25, 2010
And now, for something a little different...
...THANK YOU to Lisa the Cat Lady, Cece the Crazy Bitch, and Popeye the Wonder Dog, for keeping folks posted on events following the surgery.
...THANK YOU to the Federal Government for awarding crazy lady her disability. Yes, miracles do happen!
...THANK YOU to the Kaiser Vallejo rehab facility for pushing, torturing and challenging crazy lady, on her road to recovery. She will forever mumble "suck the gut and tuck the butt" when she needs to "center her spirit" and "focus on the moment."
...THANK YOU to Judy, Tyler and their wild pack, for taking care of me and giving crazy lady piece-of-mind during her hospitalization.
...and, THANK YOU to the wonderful readers of my blog, who have sent well-wishes, Glee music, MST3K DVDS, Black Adder puns, and beautifully knitted caps. You are AMAZING.
Luv,
Sugar Sweet
(and, of course, my crazy lady)
Tuesday, March 9, 2010
To fear (and love) life
(Warning: This post contains bad words, medical angst, and no fluff. Don't want to read it? Go here for puppies and pretty thoughts.)
Yeah, so, here's what crazy lady has taught me about fear-- you let it rule your life? You stop living. Don't get her wrong-- fear serves a purpose. It stops us from injury, illness and pain. Eventually, though, we all need to jump off that cliff, take the risk, and trust in ourselves. Her recent life's mantra is: "If I let fear make all of my decisions, I would cover my body in bubble wrap and refuse to leave my lazy-boy."
So, seven doctors. All specialists, all top neurosurgeons in the country. UCSF, UCLA, Stanford, Mayo, MGH...you name it, she has spent many months seeking their opinions. It was her version of "mitigating the risk" to "prepare for diving off that cliff." Crazy lady is part of the Kaiser system, and Kaiser is not exactly known for cutting edge technology (interestingly, though, they are known for amazing rehabilitative care following spinal cord and brain surgery). Spinal cord surgery procedures have not changed much in over 30 years, especially in the neck. Some of the most interesting advancements in nanotechnology have not reached human clinical trials, yet-- and, the powers-that-be estimate another 30 years, before the technology is ready for human consumption. Cervical spinal cord regeneration with stem cells? If she could relocate to Tokyo and Israel, then maybe that would be an option. Unfortunately, it's not a realistic approach in the U.S.A., thanks to an ignorant moral minority that put medical research 15 years behind-the-times during IBY (Idiot Bush Years). Obama is doing a lot to change the backwater approach (see here for details), but progress is slow.
Anyhow, I digress. After all of the second opinions, she found some consistencies:
(1) no one knows what, exactly, will be done during surgery, and they have to take a "let's open you up and see what we get" approach,
(2) no one can predict the outcome, and
(3) no one will know anything until 2-3 days following surgery.
Why so many unknowns? Spinal cord injuries are "crazy, unpredictable beasts." When they remove the spinal column and tumors, there will be a surge of spinal fluid, and the bruising and lesions on the cord will have a chance to "breath." In crazy lady's active imagination, her spinal cord (named "Cornie") has an ornery personality. Cornie could decide, "hey, I like my new-found freedom" and be content to stay "as is" with no change to crazy lady's current condition. Or, Cornie could say, "fuck it, you wanna play games? Take this," and then go completely (to quote one neurosurgeon) "ape shit."
Best case scenario? Five days in the hospital, home for 3-6 months of rehab (including in-home occupational and physical therapy) and recovery. The second best case? After 5 or more days in the hospital, transfer to a rehab facility for up to 18 months of inpatient care. There's a whole bunch of "little" stuff she needs to prepare for-- problems swallowing, feeding tube, losing her voice, drainage shunt for the spinal fluid, incontinence-- and, the docs are doing what they can to work around some existing issues that won't go away with surgery (autonomic dysreflexia, autoimmune complications, paralysis and seizures are her current biggies). All-in-all, crazy lady and her docs are preparing for the worse, and hoping for the best.
So, how do you mitigate risk and reduce fear, when there is absolutely no way of predicting the surgery's outcome? You start by planning for each and every contingency. No matter your age or health, it's important to...
(1) make sure you have an updated Last Will and Testament-- and communicate your wishes to anyone impacted by your will! You can find free templates here.
(2) complete an Advance Health Care Directive. The State of California has an excellent web site here, and Kaiser Hospital provides a helpful guide that anyone can use (download here).
(3) as part of your directive, include personal health care wishes-- and, make sure you communicate these wishes to family and friends. Let people know-- do you want to die at home, or in the hospital? Cremation, burial, or frozen bits? Donate your organs? It might be morbid, but taking these extra steps to communicate your wishes will seriously reduces stress, in the long run.
(4) make sure your dependents (like me!) are taken care of, no matter the outcome. I'm staying with my foster mom and her clan during and immediately after the surgery. Crazy lady has made sure my shots and insurance are up-to-date, and I'm looking forward to my pedicure this weekend.
Finally, find a way to turn the negative into a positive. Crazy lady understands arrogant bitches because, well, let's face it-- she is my caregiver and we share many of the same personality traits. She likes her brain? I love my brain! She adores her voice? You should hear me speak! She enjoys her luscious, long, light brown locks of hair? You should see my golden, thick coat. The surgery might impact her brain and voice, and crazy lady has planned for those scenarios. But, you should have heard her cries when she learned that they would be SHAVING HER HEAD AND NECK. Duh. Her central nervous system can't communicate to her brain, so the surgery requires easy access to both regions of her body. Listening to her complain, you would think they were talking about something serious, like a feeding tube or brain damage. Nope, those things did not stress her out. However, talk about shaving her head? The woman FREAKS OUT.
Ah yes, vanity and pride are cruel human traits. Crazy lady had to take time to convince herself, "It's only hair. It will grow back. Why not make it a positive experience?" So, this morning she had her hair cut off. All of it. She saved the locks and sent them to Pantene for cancer wigs:
The actual hair cut was free and painless (the Clip Joynte donated their time for charity, a "wow, awesome" surprise!) The only downfall was the bald spot she discovered in the back of her head:
Thank dawg that friends and family have been sending crazy lady beautiful scarves, caps and hats, to keep her delicate scalp warm and toasty:
So, there you have it-- a date for surgery, a lesson in fear, and some tips for dealing with life events. Plus, a little something good came out of this world of unknowns. How cool is that?
Crazy lady has decided to have the big, bad, risky surgery. March 16tth is the pre-op, and March 22nd is the actual day of surgery. Her insurance runs out in June, and she really can't afford to wait for the Social Security Administration to get their heads outta their asses and do the right thing. If she's gonna die or be completely paralyzed, she might as well have health insurance during those critical points in her life. The number one response she hears?
"Why are you so calm? I would be scared shitless."
"Why are you so calm? I would be scared shitless."
So, seven doctors. All specialists, all top neurosurgeons in the country. UCSF, UCLA, Stanford, Mayo, MGH...you name it, she has spent many months seeking their opinions. It was her version of "mitigating the risk" to "prepare for diving off that cliff." Crazy lady is part of the Kaiser system, and Kaiser is not exactly known for cutting edge technology (interestingly, though, they are known for amazing rehabilitative care following spinal cord and brain surgery). Spinal cord surgery procedures have not changed much in over 30 years, especially in the neck. Some of the most interesting advancements in nanotechnology have not reached human clinical trials, yet-- and, the powers-that-be estimate another 30 years, before the technology is ready for human consumption. Cervical spinal cord regeneration with stem cells? If she could relocate to Tokyo and Israel, then maybe that would be an option. Unfortunately, it's not a realistic approach in the U.S.A., thanks to an ignorant moral minority that put medical research 15 years behind-the-times during IBY (Idiot Bush Years). Obama is doing a lot to change the backwater approach (see here for details), but progress is slow.
(1) no one knows what, exactly, will be done during surgery, and they have to take a "let's open you up and see what we get" approach,
(2) no one can predict the outcome, and
(3) no one will know anything until 2-3 days following surgery.
Why so many unknowns? Spinal cord injuries are "crazy, unpredictable beasts." When they remove the spinal column and tumors, there will be a surge of spinal fluid, and the bruising and lesions on the cord will have a chance to "breath." In crazy lady's active imagination, her spinal cord (named "Cornie") has an ornery personality. Cornie could decide, "hey, I like my new-found freedom" and be content to stay "as is" with no change to crazy lady's current condition. Or, Cornie could say, "fuck it, you wanna play games? Take this," and then go completely (to quote one neurosurgeon) "ape shit."
So, how do you mitigate risk and reduce fear, when there is absolutely no way of predicting the surgery's outcome? You start by planning for each and every contingency. No matter your age or health, it's important to...
(1) make sure you have an updated Last Will and Testament-- and communicate your wishes to anyone impacted by your will! You can find free templates here.
(2) complete an Advance Health Care Directive. The State of California has an excellent web site here, and Kaiser Hospital provides a helpful guide that anyone can use (download here).
(3) as part of your directive, include personal health care wishes-- and, make sure you communicate these wishes to family and friends. Let people know-- do you want to die at home, or in the hospital? Cremation, burial, or frozen bits? Donate your organs? It might be morbid, but taking these extra steps to communicate your wishes will seriously reduces stress, in the long run.
(4) make sure your dependents (like me!) are taken care of, no matter the outcome. I'm staying with my foster mom and her clan during and immediately after the surgery. Crazy lady has made sure my shots and insurance are up-to-date, and I'm looking forward to my pedicure this weekend.
Ah yes, vanity and pride are cruel human traits. Crazy lady had to take time to convince herself, "It's only hair. It will grow back. Why not make it a positive experience?" So, this morning she had her hair cut off. All of it. She saved the locks and sent them to Pantene for cancer wigs:
Wednesday, October 14, 2009
An undignified response
Ah, drama. What can I say? I live with a drama queen, and she has been going through a bit of personal hell, right now. I feel her angst and have been providing the necessary comfort. It's pretty amazing how sensitive we are to our human's feelings. They're depressed? We snuggle. They're in pain? We snuggle. They're joyful? We play, followed by snuggle. I know some folks have been asking, "what's up with crazy lady?" To make a very long story short and sweet (because I AM NOT A DRAMA QUEEN), crazy lady is not having surgery. She's decided to give treatment a chance, for 6 months. The docs made it clear that the surgery would NOT fix the damage to her spinal cord. The surgery has a 33% chance of "stabilizing" her spinal cord for a little while; and a 67% chance of failure. Failure includes paralysis from the neck down and a feeding tube-- so, NO. Not now. She's giving treatment and alternate therapies a chance. She's also trying to make peace with the fact that the current damage is permanent, and she will be wearing a neck brace and carrying a cane for a long, long time.
Crazy lady has decided that this blog is about ME, and not her illness, treatment and angst. Instead, she plans to create (yet another) blog about her journey. The docs have asked her to keep a video diary, so they can monitor her progress over time. She figured, "what the hell? I might as well write about it, too." She'll post a link to her new blog, once it is up & running. Be forewarned, though-- crazy lady holds nothing back. You will be blessed with the gory details, if you decide to read about the new crapola in her life. 
I'll keep you posted. Meanwhile, please try to avoid the "keep a positive mind" sentiment, if you leave a comment. It really pisses her off, these days. She's having a hard time finding something positive about a 5 mm spinal cord "hanging by a thread" in her neck. If you're looking for a perky and positive response to her current crisis, I suggest you read a different blog. I mean, geez-- this woman writes horror for a living! She would appreciate sick and twisted humor, though...
Tuesday, September 29, 2009
Can you find me?
Crazy lady has been preoccupied with doctor's appointments and work angst. The temporary "cure" for her neck troubles made things worse, and she is not enjoying the pain, paralysis and muscle spasms. She also misses writing, and she is testing voice recognition software as an alternative to typing words. So far, she has had so-so success using the software.
The downfall? She is spending less time with ME. The QUEEN in our household. So, while crazy lady was preoccupied this morning, I went outside. This means that I used my beautiful, delicate paws to OPEN THE DOOR and hide from she-who-must-be-obeyed. She knew I wasn't a "runner," (like Abby, the last one) but she was still worried when she saw the open door. Did someone break into the house? Was I stolen? Hmmm, there were paw prints on the glass...hah! I escaped and built myself a nest:
When I heard her on the deck, I tried to sneak out of the nest-- but the bushes rustled too loudly, and my bee-hind was too large. She found me trying to wiggle out of my hiding spot. Like my indignant glare?
She was impressed with my cunning and dexterity, however. She called me a "cat," and drew comparisons between my gorgeous self and the Evil Ones. Wicked, wicked tormentor. I am plotting my revenge...anyhow, she also decided to make a small video:
You will notice that I am an excellent Huntress. See if you can find me in the video, as I decimate the pig. Enjoy!
The downfall? She is spending less time with ME. The QUEEN in our household. So, while crazy lady was preoccupied this morning, I went outside. This means that I used my beautiful, delicate paws to OPEN THE DOOR and hide from she-who-must-be-obeyed. She knew I wasn't a "runner," (like Abby, the last one) but she was still worried when she saw the open door. Did someone break into the house? Was I stolen? Hmmm, there were paw prints on the glass...hah! I escaped and built myself a nest:
When I heard her on the deck, I tried to sneak out of the nest-- but the bushes rustled too loudly, and my bee-hind was too large. She found me trying to wiggle out of my hiding spot. Like my indignant glare?
She was impressed with my cunning and dexterity, however. She called me a "cat," and drew comparisons between my gorgeous self and the Evil Ones. Wicked, wicked tormentor. I am plotting my revenge...anyhow, she also decided to make a small video:You will notice that I am an excellent Huntress. See if you can find me in the video, as I decimate the pig. Enjoy!
Wednesday, September 23, 2009
Early morning play and snuggle
So...crazy lady is drugged and on bed rest for a while, thanks to a neck injury. I'm fine, but she is cranky. She says she feels like a swollen, stuffed, puffy, fat, monster tree trunk. I say she's a drama queen. She hates remaining inactive for long periods of time-- and the docs even said "restrict your computer use!" Regardless (because compliance is always an issue with crazy lady...), she took some video of our morning snuggle and play time. It was a mellow play time, but she used the opportunity to run me through some commands. I'm suppose to be at "sit, stay" at the beginning of the video. If you listen carefully, you can hear my release command, "okay," and my wonderful response to "come."
Did you see my funky response to the "sit" command? I like to find an area that doesn't hurt my bum-bum. Crazy lady is so stoned that she actually let me get away with some stuff! Hey. I'm still pretty and perfect-- can't you tell?
Here's the bad thing-- because of her neck, crazy lady needs surgery. She can't foster Kelly. She had to tell Judy from Walkin the Bark Rescue that they needed to find another foster parent to take care of this total sweetheart. If they can't find another parent, then Kelly won't get the surgery she needs. I'm bummed, of course. I'm worried about Kelly, and I was looking forward to having another dog in the household. If you know anyone who can take care of Kelly, please have them contact Judy at dogs@walkinthebark.org.
As always, THANK YOU! I have the best fans in the world! (Hmmmm...I'm a little too perky...did crazy lady slip me some of her drugs?!?)
Did you see my funky response to the "sit" command? I like to find an area that doesn't hurt my bum-bum. Crazy lady is so stoned that she actually let me get away with some stuff! Hey. I'm still pretty and perfect-- can't you tell?
Here's the bad thing-- because of her neck, crazy lady needs surgery. She can't foster Kelly. She had to tell Judy from Walkin the Bark Rescue that they needed to find another foster parent to take care of this total sweetheart. If they can't find another parent, then Kelly won't get the surgery she needs. I'm bummed, of course. I'm worried about Kelly, and I was looking forward to having another dog in the household. If you know anyone who can take care of Kelly, please have them contact Judy at dogs@walkinthebark.org.
As always, THANK YOU! I have the best fans in the world! (Hmmmm...I'm a little too perky...did crazy lady slip me some of her drugs?!?)
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