Monday, May 31, 2010
Sunday, May 23, 2010
Occupational Therapy
(Per Wikipedia, "Occupational therapy promotes health by enabling people to perform meaningful and purposeful occupations." IMHO, the best way to fine-tune motor skills in the hands? Perform meaningful activities? Give some purpose to your life? Massage me, baby! Work those hands! Mmmmmmm...lovely...)
Saturday, May 22, 2010
Friday, May 21, 2010
Eeyore's Lost Tail and Doggy Zen
So, to acknowledge her funk, I give you a moment of Eeyore:
And, to give us all a moment of inner peace and sanctuary, here's Doggy Zen:
Saturday, May 15, 2010
Monkey See, Monkey Do
Hi - It's Crazy Lady's sister Cece again. Recovery has been a road full of lots of twists and turns and CL asked me to pop in a give you all an outside view once again.
Things have been less than ideal for my big sis right now. Hospitals and rehab and at-home support services are not new to me, but it is different when it is your sister. The same sister who used to terrorize the mean neighborhood boys into complete submission.
That said, I'm going to bring you back to the time last month when I participated in my second therapy session with Crazy Lady. It was about two weeks post-op. My sis was in a bit of a daze when my parents and I arrived. She had just had a seizure, the nurse informed us. She had fallen out of bed that night, or had a seizure and had fallen, they weren't sure. Also, her blood pressure was jumping around and she had to be monitored constantly. Crazy Lady was still positive about attending her physical therapy session.
The physical therapy rehab room was like something out of the movies. It was new and big and shiny. Mirrors, exercise equipment, parallel bars for walking, rows of therapy tables. The physical therapist that worked with Crazy Lady was young and positive and, thankfully, very aware of my sister's multiple conditions that needed to be monitored.
So when Crazy Lady started hallucinating, the therapist was immediately concerned. "I see a monkey over there!" CL mentioned, looking perplexed. "Do you have monkeys here?"
I immediately started giggling. Couldn't help myself. Please note in my description above, nowhere do I mention monkeys in the room. Therapy Lady scanned the room herself, "No we don't have monkeys here," she replied slowly. We were near the end of the session and Crazy Lady was perched between two parallel bars, taking slow and difficult steps. My sister had explained earlier that it is hard to figure out how to walk when you can't feel the bottom of your feet.
Therapy Lady stood in front of her and I stood behind, ready to catch. Ha, bad idea if you ask me. I have ADD and as soon as I heard the words "monkey in the room" I wandered off to find the critter myself. She didn't fall, so you can relax. When I got back (no monkey found), Therapy Lady was giving Crazy Lady the third degree, "So, is the monkey furry?"
"Yeah, is it telling you to do strange things? Does it talk to you? Does it want you to hurt anyone?" I had to chime in. Therapy Lady was not amused by my helpfulness. Crazy Lady was, though. We laughed all the way back to her room.
In the room things got less funny fast. The changeover with the nursing staff resulted in a drop-off of communication, and blood-pressure checks were discontinued. By the time... almost two hours later... the checks continued, her blood pressure (no surprise) had shot up. I was tempted to hook myself up on the monitor, pretty sure mine was reaching new highs after dealing with a hostile anti-social doctor and nurses who didn't believe anything they didn't read in a chart (her earlier blood pressure recordings had disappeared).
Not the best day ever. We later found out that an earlier doctor had reduced Crazy Lady's pain meds by 75% without telling her, triggering a number of problems. Boy, was she pissed. Even the nurses were appalled.
Crazy Lady thought my post might offer some comic relief, but I'm afraid this was less funny than I thought it was going to be. I did consider buying her a giant stuffed monkey for my next visit, but our mom was not amused by the idea. Maybe next time. Sugar will probably tear it to pieces. All the more reason to get one, perhaps.
Sunday, May 9, 2010
Happy Mother's Day...?
(a moment of parental Zen? or, an evil plot, masterminded by moi? you decide...)
Friday, May 7, 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
Monday, May 3, 2010
Comfort
Editor's note: for the next 4-5 days, things are a bit foggy. I was having at least 2-3 seizures a day, and I was struggling to do as many tasks as possible, on my own. Some of my struggles were due to my own stubbornness-- other struggles were due to the fact that the nursing staff made it clear that they had "more important, sicker" patients to deal with, and I was an "inconvenience" (yep, direct quote...). Thank goodness I had my computer. My journal is a rambling mess-- but, I was testing the voice recognition software, so I recorded everything that was going on, at the time. By the third day of rehab, the head honcho nurse gave me permission to incorporate Sugar into my recovery. I never felt comfortable having Sugar stay with me at the hospital because I never felt safe. However, her visits lifted my spirits. I found this journal entry, and I realized that her visits helped in other ways, too...
My First Sunday
My roommate won't stop wailing. Not the soft cries I make, while hiding in the bathroom. Large, loud, horrendous cries of grief. She is another miracle, trapped in a body that refuses to cooperate. She can't eat, so she depends on a feeding tube. She spent months in ICU, unable to walk, to communicate. Now, she can walk, she is finding ways to communicate, and she knows how to express her emotions. She has the most beautiful smile I have ever seen-- and the most heartbreaking cry I have ever heard. Her husband sleeps next to her bed, in a small chair the nurses have provided. He cares for her every need. He bathes her, takes her to the bathroom, gives her medication, and has even learned to feed her using the stomach tube. He has left her for a much-needed respite, and a moment of prayer. She is devastated without him, and she won't stop crying.
No one comes to visit, to check on her. I call the nurses, but they refuse to help. "Nothing we can do, we have other patients that need us, it's almost shift change." I try to talk to my roommate over the curtains, across the room, to let her know that she is not alone. The distance doesn't help. I call and ask a nurse to help me into the wheelchair. She refuses, again, there are more important patients that need her help before her shift ends. I crawl from my bed and climb into the chair. By myself. Falling, not caring, because someone needs to do something. I'm not saint. I'm tired, sad, in pain-- but, I find a way to plant a smile on my face and drag myself to my roommates bed.
I touch her hand. She continues to cry.
"Hi. What can I do to help? Do you need something?"
Her mouth is so swollen that she can not speak, but she communicates with her hands and grunts small words. It's a mix of English and Tagalog, but I understand what she says.
"Ah, your hubby is at church. He'll be back soon. Did you see my dog, Sugar, today?"
She smiles.
"Sugar is beautiful, right? She's a service dog. She takes care of me. I miss her. Not the same as your hubby, but she's a part of me, you know?"
She stops crying and touches her left chest.
"Yes, a part of my heart. So, do you like dogs?"
She nods her head and touches her chest, again, smiling.
"Ah, I see, you love dogs! Well, let me tell you Sugar's story..."
I stay by her side and hold her hand. I tell her Sugar's story of abandonment, rescue and service to humankind. Her husband enters the room and we don't even see him, we are both so enthralled with Sugar's life. In the end, she laughs. She looks up and sees her husband. She claps her hands in joy.
I wheel back to my bed and call the nurse. For once, someone comes and helps me to my bed.They have had a shift change and it's the gentle nurse, the one who (I've learned) will always be ready to help, no matter the emergency or need. She has only been assigned to me once, but I remember her care, attention, and kindness. As she tucks me in, the nurse whispers, "We're not suppose to encourage patients to talk too much with each other, get involved in each others lives. It's important to respect each others privacy. But, what you did? That was a beautiful thing to do. She looks happy."
I did nothing special. I cared for her like I wish someone would care for me. I treated her like Sugar cares for me, every day I am with her.
All I did was give comfort to someone who was feeling alone.
ZEN
My First Sunday
My roommate won't stop wailing. Not the soft cries I make, while hiding in the bathroom. Large, loud, horrendous cries of grief. She is another miracle, trapped in a body that refuses to cooperate. She can't eat, so she depends on a feeding tube. She spent months in ICU, unable to walk, to communicate. Now, she can walk, she is finding ways to communicate, and she knows how to express her emotions. She has the most beautiful smile I have ever seen-- and the most heartbreaking cry I have ever heard. Her husband sleeps next to her bed, in a small chair the nurses have provided. He cares for her every need. He bathes her, takes her to the bathroom, gives her medication, and has even learned to feed her using the stomach tube. He has left her for a much-needed respite, and a moment of prayer. She is devastated without him, and she won't stop crying.
No one comes to visit, to check on her. I call the nurses, but they refuse to help. "Nothing we can do, we have other patients that need us, it's almost shift change." I try to talk to my roommate over the curtains, across the room, to let her know that she is not alone. The distance doesn't help. I call and ask a nurse to help me into the wheelchair. She refuses, again, there are more important patients that need her help before her shift ends. I crawl from my bed and climb into the chair. By myself. Falling, not caring, because someone needs to do something. I'm not saint. I'm tired, sad, in pain-- but, I find a way to plant a smile on my face and drag myself to my roommates bed.
I touch her hand. She continues to cry.
"Hi. What can I do to help? Do you need something?"
Her mouth is so swollen that she can not speak, but she communicates with her hands and grunts small words. It's a mix of English and Tagalog, but I understand what she says.
"Ah, your hubby is at church. He'll be back soon. Did you see my dog, Sugar, today?"
She smiles.
"Sugar is beautiful, right? She's a service dog. She takes care of me. I miss her. Not the same as your hubby, but she's a part of me, you know?"
She stops crying and touches her left chest.
"Yes, a part of my heart. So, do you like dogs?"
She nods her head and touches her chest, again, smiling.
"Ah, I see, you love dogs! Well, let me tell you Sugar's story..."
I stay by her side and hold her hand. I tell her Sugar's story of abandonment, rescue and service to humankind. Her husband enters the room and we don't even see him, we are both so enthralled with Sugar's life. In the end, she laughs. She looks up and sees her husband. She claps her hands in joy.
I wheel back to my bed and call the nurse. For once, someone comes and helps me to my bed.They have had a shift change and it's the gentle nurse, the one who (I've learned) will always be ready to help, no matter the emergency or need. She has only been assigned to me once, but I remember her care, attention, and kindness. As she tucks me in, the nurse whispers, "We're not suppose to encourage patients to talk too much with each other, get involved in each others lives. It's important to respect each others privacy. But, what you did? That was a beautiful thing to do. She looks happy."
I did nothing special. I cared for her like I wish someone would care for me. I treated her like Sugar cares for me, every day I am with her.
All I did was give comfort to someone who was feeling alone.
ZEN
Sunday, May 2, 2010
The first 3 days
The beginning
My first thought after 7+ hours of surgery? "I'm alive. Take that, hah!"
My second thought? "Fuck, I can't move my body, son-of-a-bitch, what the hell, someone help me NOW."
Yeah, the inability to move my legs and arms had managed to put me in a total freak-out. The doctor came over, ran some tests, and mumbled something about "swelling." She left, and another doctor came to my bedside. She looked about 12 years old, and her head barely reached the top of the recovery bed. "Remember me?" she asked. "I was the neurologist who watched your nerves during surgery."
My intelligent, productive, helpful response?
"Really? Last I checked, I was ASLEEP during surgery. I don't remember a damn thing."
(Have I mentioned the "sarcastic bitch when scared and in pain" personality trait? I blame genetics, of course. Just look at my sisters.)
This sweet, young, adorable pixie actually GIGGLED, when I spoke to her. I was not being funny. I would have lifted my arms and moved my fingers around her throat, if I had any motor function left in my body. She is one lucky pixie.
"Everything is fine" (giggle) "Your nerves checked out fine during surgery" (giggle, giggle) "I'm sure this is just swelling or spinal cord shock" (giggle) "Feeling will return soon, within a couple of days" (giggle, wave, run for her frackin life)
24 hours later, the pixie was vindicated. Somewhat. I could move my arms and legs. Still weak, can't walk, can't feel a damn thing-- and no way can I eat solid food. Choke, choke, choke, But I can move. The nurse keeps staring at me and laughing. Do you think she finds my flailing leg pushing the food cart funny? Probably. I find it funny, too.
Wish I were a better person. Wish I was happy to be alive, to have some motor functions (damn left hand still won't move, and my toes suck because they won't listen to my brain). I'm scribbling on paper towels, only 5-6 words at a time, using my right hand, the only one that works, the one I never used to use. I need to start my story, even though this situation SUCKS. (Editor's note: "sucks" was underlined five times, with many exclamation marks-- I admit, a bit overly dramatic...)
This was found on the margins of a Vogue magazine, written later that night:
fuck, pain. pain, pain, pain. the numbness has left my shoulders, and my entire body is on fire. electrical jolts in my fingers, and muscle spasms are in my neck, arms, hands, butt, abdomen and chest. there are "creepy crawly" bugs running under my skin. (Editor's note: I knew there were no bugs crawling on my skin. I just called the feeling "creepy crawly bugs" because it felt like something was climbing across my shoulders, arms, legs and neck. It's a weird type of nerve pain.) i almost wish the dead and numb feet, legs and hands would spread to the rest of my body. i miss the pre-surgery days of numbness. this pain sucks. the seizures won't stop. make it all go away.
Day 2
OMG, OMG, OMG. The most gorgeous human being has walked into my room. Brown skin, glorious smile, butterscotch eyes. Yum. Yep, my hormones are fully functional, too bad I feel like a floppy porpoise and can't get laid. Orgasms are on the no-no list, and why bother with sex if...? (Editor's note: orgasms can cause autonomic dysreflexia) Damn, he's hot. Damn, he's a doctor. Oh, double-damn-- he's head of the fucking department, married with many kids. No harm in lusting after someone though, right? Oh wait. He thinks I'm a good candidate for rehab in Vallejo. Awesome news. Best program in the state, maybe the country. They'll teach me to use my legs, arms, live life. They'll find a way to control the autonomic dysreflexia. How cool is that? Damn though, the hormones have turned me into a giggling 14-year-old that will agree to anything, right now. I am even writing like a hormonally-crazed adolescent from the 80s. OMG? Cool? Fur shur? Where do those words come from? My mouth? YECH. I suspect I am channeling that silly pixie neurologist.
Day 3
son of a bitch. i made it to vallejo rehab, but i have no idea what's going on. the paramedics put me on my new bed and left. my family is here. the doctor won't talk to me. he talks, but it's to confirm info in my chart. he doesn't listen. i try to tell him that i have other diseases, serious things wrong that will impact my recovery. the nurses said my seizures are worse, daily. muscle spasms are horrific. i'm starting a small fever, which could become something bad. very bad, very fast. he refuses to hear me. i get so frustrated that i tell him to call and consult with my pcp in san francisco, with my autoimmune doc, with my neurologist. he refuses. "i treat spinal cord injuries, that's all i need to know" he strips me naked in front of my sister and parents, and i ask them to leave. they don't need to see me poked and prodded. they already had to hear too much about my life, my health, the things i did to hide my illness from them before surgery. this doctor won't listen. he doesn't know why i asked my family to leave. he is holding a safety pin and sticking it into my body parts, causing spots of blood on the sheets. poking my anus. i feel nothing. i am freaking out. why don't i feel something, anything???
my family doesn't need to hear me scream.
(later, scribbled on the inside of a bag, hard to decipher some words)
it is 3 am and i can't stop crying. the doc told me i should be able to deal with more pain, that i should not ask for meds until i was an 8 out of 10. that's barely able to move due to pain. i ask for meds when i am at a 5 or 6, because i know it will get worse. i tell him that my autoimmune disease causes muscle and chest pain, but he doesn't believe me, he doesn't understand, he goes ahead and lowers the amount of pain meds prescribed by my PCP and surgeon, and HE DOESN'T TELL ME. i have to hear it from the nite nurse. she makes me feel weak, mocks my pain, says i am too sensitive to pain. i have to beg for an extra pain pill. i am begging like a fuckin addict, but i can't move my shoulders and arms because the muscle spasms won't stop. i'm scared. the nurses walk away. no one will talk to me, tell me what's happening, what to expect in the hospital. not knowing, not having a schedule? my worst nightmare. is a little compassion, comfort too much to ask for? they agree that the doctor is challenging, and tell me to talk to him. they refuse to ask the doctor on call to change my pain meds back to my ORIGINAL DOSAGE. at least they should let me know if someone will help me get to class, dress me, feed me breakfast in the morning. they've already forgotten to feed me lunch and dinner today, and they made fun of me when i tried to open the apple sauce, to take my ever-changing meds. i can't use my fingers, no strength, barely hold this pen, even with breaks. tried using my teeth. ouch. okay, it was kinda funny, and i had to laugh at the silliness. they finally helped me when they saw i couldn't do it. still, i can't stop crying tonight. damn. this is not what i expected, wanted, dreamed about...so sad...so hurt...this sucks.
ZEN
My first thought after 7+ hours of surgery? "I'm alive. Take that, hah!"
My second thought? "Fuck, I can't move my body, son-of-a-bitch, what the hell, someone help me NOW."
Yeah, the inability to move my legs and arms had managed to put me in a total freak-out. The doctor came over, ran some tests, and mumbled something about "swelling." She left, and another doctor came to my bedside. She looked about 12 years old, and her head barely reached the top of the recovery bed. "Remember me?" she asked. "I was the neurologist who watched your nerves during surgery."
My intelligent, productive, helpful response?
"Really? Last I checked, I was ASLEEP during surgery. I don't remember a damn thing."
(Have I mentioned the "sarcastic bitch when scared and in pain" personality trait? I blame genetics, of course. Just look at my sisters.)
This sweet, young, adorable pixie actually GIGGLED, when I spoke to her. I was not being funny. I would have lifted my arms and moved my fingers around her throat, if I had any motor function left in my body. She is one lucky pixie.
"Everything is fine" (giggle) "Your nerves checked out fine during surgery" (giggle, giggle) "I'm sure this is just swelling or spinal cord shock" (giggle) "Feeling will return soon, within a couple of days" (giggle, wave, run for her frackin life)
24 hours later, the pixie was vindicated. Somewhat. I could move my arms and legs. Still weak, can't walk, can't feel a damn thing-- and no way can I eat solid food. Choke, choke, choke, But I can move. The nurse keeps staring at me and laughing. Do you think she finds my flailing leg pushing the food cart funny? Probably. I find it funny, too.
Wish I were a better person. Wish I was happy to be alive, to have some motor functions (damn left hand still won't move, and my toes suck because they won't listen to my brain). I'm scribbling on paper towels, only 5-6 words at a time, using my right hand, the only one that works, the one I never used to use. I need to start my story, even though this situation SUCKS. (Editor's note: "sucks" was underlined five times, with many exclamation marks-- I admit, a bit overly dramatic...)
This was found on the margins of a Vogue magazine, written later that night:
fuck, pain. pain, pain, pain. the numbness has left my shoulders, and my entire body is on fire. electrical jolts in my fingers, and muscle spasms are in my neck, arms, hands, butt, abdomen and chest. there are "creepy crawly" bugs running under my skin. (Editor's note: I knew there were no bugs crawling on my skin. I just called the feeling "creepy crawly bugs" because it felt like something was climbing across my shoulders, arms, legs and neck. It's a weird type of nerve pain.) i almost wish the dead and numb feet, legs and hands would spread to the rest of my body. i miss the pre-surgery days of numbness. this pain sucks. the seizures won't stop. make it all go away.
Day 2
OMG, OMG, OMG. The most gorgeous human being has walked into my room. Brown skin, glorious smile, butterscotch eyes. Yum. Yep, my hormones are fully functional, too bad I feel like a floppy porpoise and can't get laid. Orgasms are on the no-no list, and why bother with sex if...? (Editor's note: orgasms can cause autonomic dysreflexia) Damn, he's hot. Damn, he's a doctor. Oh, double-damn-- he's head of the fucking department, married with many kids. No harm in lusting after someone though, right? Oh wait. He thinks I'm a good candidate for rehab in Vallejo. Awesome news. Best program in the state, maybe the country. They'll teach me to use my legs, arms, live life. They'll find a way to control the autonomic dysreflexia. How cool is that? Damn though, the hormones have turned me into a giggling 14-year-old that will agree to anything, right now. I am even writing like a hormonally-crazed adolescent from the 80s. OMG? Cool? Fur shur? Where do those words come from? My mouth? YECH. I suspect I am channeling that silly pixie neurologist.
Day 3
son of a bitch. i made it to vallejo rehab, but i have no idea what's going on. the paramedics put me on my new bed and left. my family is here. the doctor won't talk to me. he talks, but it's to confirm info in my chart. he doesn't listen. i try to tell him that i have other diseases, serious things wrong that will impact my recovery. the nurses said my seizures are worse, daily. muscle spasms are horrific. i'm starting a small fever, which could become something bad. very bad, very fast. he refuses to hear me. i get so frustrated that i tell him to call and consult with my pcp in san francisco, with my autoimmune doc, with my neurologist. he refuses. "i treat spinal cord injuries, that's all i need to know" he strips me naked in front of my sister and parents, and i ask them to leave. they don't need to see me poked and prodded. they already had to hear too much about my life, my health, the things i did to hide my illness from them before surgery. this doctor won't listen. he doesn't know why i asked my family to leave. he is holding a safety pin and sticking it into my body parts, causing spots of blood on the sheets. poking my anus. i feel nothing. i am freaking out. why don't i feel something, anything???
my family doesn't need to hear me scream.
(later, scribbled on the inside of a bag, hard to decipher some words)
it is 3 am and i can't stop crying. the doc told me i should be able to deal with more pain, that i should not ask for meds until i was an 8 out of 10. that's barely able to move due to pain. i ask for meds when i am at a 5 or 6, because i know it will get worse. i tell him that my autoimmune disease causes muscle and chest pain, but he doesn't believe me, he doesn't understand, he goes ahead and lowers the amount of pain meds prescribed by my PCP and surgeon, and HE DOESN'T TELL ME. i have to hear it from the nite nurse. she makes me feel weak, mocks my pain, says i am too sensitive to pain. i have to beg for an extra pain pill. i am begging like a fuckin addict, but i can't move my shoulders and arms because the muscle spasms won't stop. i'm scared. the nurses walk away. no one will talk to me, tell me what's happening, what to expect in the hospital. not knowing, not having a schedule? my worst nightmare. is a little compassion, comfort too much to ask for? they agree that the doctor is challenging, and tell me to talk to him. they refuse to ask the doctor on call to change my pain meds back to my ORIGINAL DOSAGE. at least they should let me know if someone will help me get to class, dress me, feed me breakfast in the morning. they've already forgotten to feed me lunch and dinner today, and they made fun of me when i tried to open the apple sauce, to take my ever-changing meds. i can't use my fingers, no strength, barely hold this pen, even with breaks. tried using my teeth. ouch. okay, it was kinda funny, and i had to laugh at the silliness. they finally helped me when they saw i couldn't do it. still, i can't stop crying tonight. damn. this is not what i expected, wanted, dreamed about...so sad...so hurt...this sucks.
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:
Subscribe to:
Posts (Atom)
Posts
