I want to take time to follow up on my last entry. I activated my "I've fallen and I can't get up" button system last week, and am wearing it around the house full time now. I find I am having mixed feelings about it. I keep saying to myself, "I'm only 57 years old! I'm too young to have to wear one of these!" Now, I know that age has nothing to do with disability, and disability only slows me down, it has not stopped me. I know I can feel any age I choose, with a bit of imagination, and can choose to feel-and act-young or old, one after the another, if I wish. But the refrain still echoes in my mind, "I'm only 57 years old..."
And I am quite aware that the button does nothing to help me not fall. It only helps if I fall so badly that I can't get up. So far I have always managed to get up (except for that one time, right after surgery, when I had to call the fire department for lift assistance, but even then I managed to scoot myself to the phone), so unless I break a hip or something, I am paying big bucks (for me) for something I hope I'll never use.
So I have been asked, how did I get here? Poorly controlled diabetes, over the course of more than thirty years. I was not bad the whole time. In good times, I controlled my blood sugars very well, balancing food, exercise and insulin well. In bad times I gave up, still giving myself insulin, but eating badly and not exercising. And I have been depressed on and off my whole life.
This lead to one of those invisible, under-discussed, exquisitely painful diseases: peripheral neuropathy. It happens when nerves die. I have a weird, almost unexplainably painful feeling/non-feeling situation in my feet. Huh? you say. I have numbness and buzzing and pin-and-needles and pain in my feet, and right arm and hand. The former is from diabetes, the latter from the injury to my arm. It is a kind of pain that only those who have it (and there are other causes beside diabetes) can understand. There is no way to explain that I actually have pain somewhere that is numb. And asleep. And buzzing. All at the same time.
The upshot of all this is that have very little feeling in my feet, no real sense of where they are in space, therefore where I am in space. Not only do I trip over my own feet, I trip over the floor as well, and, set free on a road, I walk like a drunk, wandering wobbly legged from one side of the road toward the other, three steps forward, one step back. Hence the walker. With it, I don't have the back and forth across the road problem. and am much less likely to trip over my own feet.
Diabetic neuropathy can also mess with inner organs-the heart (I had open heart surgery at age 43), the kidneys (OK so far) and body regulating systems (like blood pressure). Hence the orthoscopic hypotension, where my BP falls so drastically when I stand up. Ironically, I didn't fall at 380+ pounds, somehow my weight kept me grounded. (Yes, I did fall at work and smashed my right arm, but that was because I had the phone cord wrapped around my feet.) Now, at 162 pounds, I'm on the ground all the time.
I am considering a housemate, though I've grown to love living alone. And a roommate will not keep me from falling. As I have said before, I try hard to stand still before I start, but don't always remember-like when I get up in the middle of the night to use the bathroom. I land in the hall a lot.
Now, don't get me wrong. I sound as if I fall daily. This is not true at all. I go down a couple times a month, and rarely as spectacularly as two weekends ago. It is just often enough to make my daughter crazy, my friends worry, and me frustrated. I want to thank all those who commented with worry, concern and care on my last entry, and reassure all that I am trying very hard not to fall.
I think the best suggestion was to only fall on pillows. I am considering a couple of options. 1) to pillow the floor throughout the entire house or 2) to have a "pillow suit" made, one which will cover me from head to toe, leaving out only my eyes and nose. What do you think?
Blessings, Margo
Wednesday, January 24, 2007
Tuesday, January 16, 2007
Be Careful...
Be careful what you ask for, you might get it.
After nearly three months "home bound" and rarely leaving the house, Workers' Comp decided I no longer needed an aide, therefore I am no longer stuck in the house-I have been freed! I can drive short distances, like to physical therapy.
I felt like a bird whose cage has suddenly been opened.
I decided I had to do something exciting now that I was out. I chose the Annual Neighborhood Progressive Christmas Dinner for my exciting event. It is a party that follows Christmas. We start at one house for appetizers, a second for salad, a third for entrees, and a final house for dessert. The celebrants include everyone who live in the fifteen houses in our little Historical District, kids, boyfriends, girlfriends, parents, grandparents, partners, anyone who happens to be around. It is a chance to catch up in winter, when most of us hibernate.
For me, the exciting part was to be getting all dolled up to go-my first shower alone, nice clothes, make up, real shoes-as opposed the my 5x sweats and Birkenstocks I've been hanging out in. I planned go out and knock my neighbors dead with my whole get up. A few had all seen me grubby, cranky, and in pain, most had not seen me at all for the few months. Now I would have the opportunity to show off a bit, my whole weight loss, my one set of nice clothes that fit. And I knew it would get me out among people, a real struggle in my present life.
I was looking forward to it all week. Saturday dawned gray and gloomy, but I was happy. I went to physical therapy, discovered that driving on bumpy roads (the only kind we have in CT) is quite painful. I didn't care. Came home, took a nap, then a shower. In my 5x bathrobe, I wandered into the kitchen to start making the appetizer I was taking. My time line was set: make food, get dressed, find and apply makeup, find shoes, take cane and food and set off up the street.
Thinking of all this, I opened a my pantry door, reached in, then felt myself take a small step backwards, then another larger step. First I was surprised. Then the news flash sliced through my brain: "Oh sh*t, I am out of control." And in that split second, I was. I reached for the doorknob, and missed. Blasting through my head was a mantra like cry: "Don't fall on your right shoulder!" I turned left, aiming for the table. My feet seemed to have a life if their own, pirouetting in a complex series of shambling moves over which I had no control. I missed the table because I was now moving faster and faster, reminiscent of an out of control whirling dervish.
By now I knew that I was going to go down. Unfortunately I was headed towards the edge of the kitchen counter. After that things got too complicated to document clearly. I know I hit the edge of the counter, turned enough to eventually land on my (left) buttock. Somehow or other, I scraped my inner arm (left), banged my left chin and shoulder, then landed on the floor, hitting my head on the pantry trim on the way down.
When everything came to a stop, I lay on the floor, holding the top of my head, trying to assess where I hurt. At first I thought I had just banged my shoulder and head. But when I sat up there was blood on the floor. I took my hands away, and the were bloody too.
My first thought was: "There goes the party." I have promised Meg that anytime I fall, bang my head and bleed, I would call 911. So I did, grabbing a handful of napkins to staunch the flow of blood. The 911 operator told me to stay where I was. I told him I'd had to stand up to reach the phone, so I might as well go sit in the living room where I'd be comfortable.
Luckily I could grab some laundry in the dining room, because I did not want to greet the EMT's in my huge bathrobe. I found I had grabbed 5x sweats, but put them on anyway, trying to keep pressure on my wound, and talk to the 911 operator all at once. Then I sat there holding the phone and shaking.
But by now I was seeing the funny side of all this. The ambulance would arrive just as the entire neighborhood was heading toward cocktails. Sure enough, the ambulance rounded the corner and half a dozen neighbors came to huddle around the ambulance and worry. Claudia, God bless her, barged right past the EMT's to see if she could help.
So off to the hospital I went, giving the royal wave to neighbors as we bumped out of the village. [As an aside, if you have never ridden in an ambulance, and I hope you never do, the ride is very, very bumpy.] Sometime in the middle of all the chaos I had managed to call Meg, too, because she called Peggy, who
eventually arrived join me at the hospital.
We arrived at the ER to discover the waiting room overflowing, every cubicle filled, people lying on gurneys in the hall, nurses looking stressed, and the triage nurse frantic. She looked at me for 30 seconds and gave me my first big break of the day. She told the EMT's to take me right into Fast Track. As I got on the gurney, I began feeling silly... I shouldn't have called 911, I shouldn't make a big deal about hitting my head, there wasn't that much blood...
Peggy arrived and told me to shut up (that's what friends are for), and soon after, the doctor came in and said the same thing, only more nicely. He asked a lot of questions, peered at my head, and announced I had a mild to moderate concussion and needed stitches(!) After rummaging around looking for the surgical stapler, he gave up, and actually put in three stitches. Soon after, I was out and on the way home.(This is Fast Track at its best, but, alas, one needs to arrive by ambulance to get into Fast Track quickly!)
I did actually make the third venue of the party, clean, but scraggly haired, in smaller sweatpants, but size 5x on top, so I didn't have to bother my head, no make up, wearing white socks and Birks, with a headache to end all headaches, and Peggy along to prop me up. I made a quick round to tell everybody that I was okay, while Peg ate some dinner, then retired home quickly to my recliner, where I am still sleeping these days.
Such was my exciting event. Rather different from the one I had in mind.
I am still grappling with this, my third trip to the ER due to bloody falls in the last year. I have ordered an emergency button to wear around my neck, which will be good if I ever fall and am not able to get up, but does nothing to stop me from falling. I am unwilling to say so to Meg, who worries way too much about me, but I'm falling way too often, and (so far) none of the dozen or so doctors I've talked to have as much as a suggestion to help-except to be careful.
And I am!
Unfortunately, it's just not possible to be aware every minute. Most of us spend a lot of time spacing out as we move from one room to another, or reach into the cupboard. And as soon as I drift a bit, my feet start drifting, too, off to one side, or backwards, because I have no sense of my feet, and where they are. This leads to not having a real sense of where I am in space, a dangerous thing, in my experience.
And this does not take into account of my BP which drops twenty points when I stand up. This is easier to deal with- I just stand still for ten seconds until the dizziness passes. Except when I'm in a hurry and forget. But really, I'm much better at this than thinking about every step. My cardiologist actually put me on meds to raise my blood pressure, but it hasn't helped.
And such is life. I keep reminding myself that although I didn't have the
experience I wanted, I'm still free from my stay-at-home constraints. I am not exactly jumping with joy in my life, but tomorrow I will drive myself to p.t. again. Maybe by next month I'll be strong enough to put my walker into the car, so I can go walking at the Casino or mall. By spring, I'll be into onto other things. And if I fall? I'll haul myself up, once again, and keep going. As usual.
Blessings, Margo
After nearly three months "home bound" and rarely leaving the house, Workers' Comp decided I no longer needed an aide, therefore I am no longer stuck in the house-I have been freed! I can drive short distances, like to physical therapy.
I felt like a bird whose cage has suddenly been opened.
I decided I had to do something exciting now that I was out. I chose the Annual Neighborhood Progressive Christmas Dinner for my exciting event. It is a party that follows Christmas. We start at one house for appetizers, a second for salad, a third for entrees, and a final house for dessert. The celebrants include everyone who live in the fifteen houses in our little Historical District, kids, boyfriends, girlfriends, parents, grandparents, partners, anyone who happens to be around. It is a chance to catch up in winter, when most of us hibernate.
For me, the exciting part was to be getting all dolled up to go-my first shower alone, nice clothes, make up, real shoes-as opposed the my 5x sweats and Birkenstocks I've been hanging out in. I planned go out and knock my neighbors dead with my whole get up. A few had all seen me grubby, cranky, and in pain, most had not seen me at all for the few months. Now I would have the opportunity to show off a bit, my whole weight loss, my one set of nice clothes that fit. And I knew it would get me out among people, a real struggle in my present life.
I was looking forward to it all week. Saturday dawned gray and gloomy, but I was happy. I went to physical therapy, discovered that driving on bumpy roads (the only kind we have in CT) is quite painful. I didn't care. Came home, took a nap, then a shower. In my 5x bathrobe, I wandered into the kitchen to start making the appetizer I was taking. My time line was set: make food, get dressed, find and apply makeup, find shoes, take cane and food and set off up the street.
Thinking of all this, I opened a my pantry door, reached in, then felt myself take a small step backwards, then another larger step. First I was surprised. Then the news flash sliced through my brain: "Oh sh*t, I am out of control." And in that split second, I was. I reached for the doorknob, and missed. Blasting through my head was a mantra like cry: "Don't fall on your right shoulder!" I turned left, aiming for the table. My feet seemed to have a life if their own, pirouetting in a complex series of shambling moves over which I had no control. I missed the table because I was now moving faster and faster, reminiscent of an out of control whirling dervish.
By now I knew that I was going to go down. Unfortunately I was headed towards the edge of the kitchen counter. After that things got too complicated to document clearly. I know I hit the edge of the counter, turned enough to eventually land on my (left) buttock. Somehow or other, I scraped my inner arm (left), banged my left chin and shoulder, then landed on the floor, hitting my head on the pantry trim on the way down.
When everything came to a stop, I lay on the floor, holding the top of my head, trying to assess where I hurt. At first I thought I had just banged my shoulder and head. But when I sat up there was blood on the floor. I took my hands away, and the were bloody too.
My first thought was: "There goes the party." I have promised Meg that anytime I fall, bang my head and bleed, I would call 911. So I did, grabbing a handful of napkins to staunch the flow of blood. The 911 operator told me to stay where I was. I told him I'd had to stand up to reach the phone, so I might as well go sit in the living room where I'd be comfortable.
Luckily I could grab some laundry in the dining room, because I did not want to greet the EMT's in my huge bathrobe. I found I had grabbed 5x sweats, but put them on anyway, trying to keep pressure on my wound, and talk to the 911 operator all at once. Then I sat there holding the phone and shaking.
But by now I was seeing the funny side of all this. The ambulance would arrive just as the entire neighborhood was heading toward cocktails. Sure enough, the ambulance rounded the corner and half a dozen neighbors came to huddle around the ambulance and worry. Claudia, God bless her, barged right past the EMT's to see if she could help.
So off to the hospital I went, giving the royal wave to neighbors as we bumped out of the village. [As an aside, if you have never ridden in an ambulance, and I hope you never do, the ride is very, very bumpy.] Sometime in the middle of all the chaos I had managed to call Meg, too, because she called Peggy, who
eventually arrived join me at the hospital.
We arrived at the ER to discover the waiting room overflowing, every cubicle filled, people lying on gurneys in the hall, nurses looking stressed, and the triage nurse frantic. She looked at me for 30 seconds and gave me my first big break of the day. She told the EMT's to take me right into Fast Track. As I got on the gurney, I began feeling silly... I shouldn't have called 911, I shouldn't make a big deal about hitting my head, there wasn't that much blood...
Peggy arrived and told me to shut up (that's what friends are for), and soon after, the doctor came in and said the same thing, only more nicely. He asked a lot of questions, peered at my head, and announced I had a mild to moderate concussion and needed stitches(!) After rummaging around looking for the surgical stapler, he gave up, and actually put in three stitches. Soon after, I was out and on the way home.(This is Fast Track at its best, but, alas, one needs to arrive by ambulance to get into Fast Track quickly!)
I did actually make the third venue of the party, clean, but scraggly haired, in smaller sweatpants, but size 5x on top, so I didn't have to bother my head, no make up, wearing white socks and Birks, with a headache to end all headaches, and Peggy along to prop me up. I made a quick round to tell everybody that I was okay, while Peg ate some dinner, then retired home quickly to my recliner, where I am still sleeping these days.
Such was my exciting event. Rather different from the one I had in mind.
I am still grappling with this, my third trip to the ER due to bloody falls in the last year. I have ordered an emergency button to wear around my neck, which will be good if I ever fall and am not able to get up, but does nothing to stop me from falling. I am unwilling to say so to Meg, who worries way too much about me, but I'm falling way too often, and (so far) none of the dozen or so doctors I've talked to have as much as a suggestion to help-except to be careful.
And I am!
Unfortunately, it's just not possible to be aware every minute. Most of us spend a lot of time spacing out as we move from one room to another, or reach into the cupboard. And as soon as I drift a bit, my feet start drifting, too, off to one side, or backwards, because I have no sense of my feet, and where they are. This leads to not having a real sense of where I am in space, a dangerous thing, in my experience.
And this does not take into account of my BP which drops twenty points when I stand up. This is easier to deal with- I just stand still for ten seconds until the dizziness passes. Except when I'm in a hurry and forget. But really, I'm much better at this than thinking about every step. My cardiologist actually put me on meds to raise my blood pressure, but it hasn't helped.
And such is life. I keep reminding myself that although I didn't have the
experience I wanted, I'm still free from my stay-at-home constraints. I am not exactly jumping with joy in my life, but tomorrow I will drive myself to p.t. again. Maybe by next month I'll be strong enough to put my walker into the car, so I can go walking at the Casino or mall. By spring, I'll be into onto other things. And if I fall? I'll haul myself up, once again, and keep going. As usual.
Blessings, Margo
Saturday, January 06, 2007
Happy New Year?
Happy New Year to all. I have been browsing around the Internet and lots of people are making resolutions, optimistically looking forward to all the possibilities the years will offer. Needless to say, I am not one of them.
I know that Warrior Woman, that part of me that keeps me moving forward no matter what, is alive and doing her job. I am doing my physical therapy exercises at home as well as at the p.t. office. I've tried driving a couple of times, but still don't feel safe, so I have accepted another week or two of being home. I am thinking of places I can walk once I'm free to drive again. I have even answered an Internet match e-mail.(Thank you, Becky, you didn't think I'd take up your suggestion from several months ago seriously, did you?) But of course, I can't drive yet, so I can't get out there to meet anyone yet.
But I am not filled with enthusiasm about anything-a sure sign of depression. I am once again in the dark pit, and have been for quite a while. I am quite able to put on the happy face for a few hours, a day here or there, an entry or two here, but afterwards the smile goes and I am left alone in my house, with nobody to talk to and nothing to do.
Meg calls with questions about what to do in her life, and when I have asked her to take me to a doctor's appointment, she has complied. But if I ask too much, she makes me aware of it. Peggy calls most days, and drops by for brief visits on the weekend. I go for physical therapy twice a week. Other than that, I am alone at home and talk to no one. The days are long and the nights are filled with HGTV and the Discovery channels.
I rarely fall into blaming myself for being alone anymore. I do not believe it is something I do or did, or that I am unfriendly, or not worth being friends with. I know my strengths-compassion, a nonjudgmental attitude, self-awareness, inner strength and a stick-to-it-ness that kicks in whether I want it to or not. I know at least some of my faults-I am neurotically early, I am afraid of peoples' rage, I am such an introvert that I have to retreat to know what I am feeling. And perhaps worst of all, I was born with my cup half empty. Telling me to be optimistic is like telling a chronic depressive to just cheer up.
But none of this explains why I am so alone. People who have partners or families or friend they go out with or coworkers they like have no idea what it is like to speak to no one for literally days on end. No, this is not a pity party. It is a form of musing, to put life into perspective.
I think I am alone because life, the universe, fate, the gods, the Goddess, whatever, dealt me a series of long term blows and I had to let go of everything to concentrate on survival and then healing. There is no great plan to teach me some big lesson, although I have learned some things about myself, loyalty, and courage. There is no big reason, no Goddesses or fates or fairies who stepped in to smite me down like God did Job. It all just is, and I cannot fix it right now. I can only keep going as I am.
I cannot screw up much enthusiasm this New Year. Each of the last three years has been miserable in its own different way. And I have kept on keeping on. I will do the same this year, blindly believing that things can only get better...or worse. Either way I will keep on keeping on.
Blessings, Margo
Sunday, December 31, 2006
Joyeux Noel, in retrospect
I have not been quiet this week because I had a depressing Christmas. I actually had a good Christmas Day. Meg called around 8:30 AM-they had been up for at least an hour with the baby by then-and came to get me at 9:30. Myla had just fallen asleep as I got there, so Meg put her down and we (mostly they) opened presents, including the baby's, until she woke up an hour or so later. We had saved a gift for her to watch unwrapped, but as soon as I began tearing the paper off, she burst into a loud wail, with big fat tears puddling up in her eyes and overflowing down her cheeks.
I am only slightly ashamed to admit that her loving mother and adoring grandmother bust into laughter at her reaction! Then, of course, we had to try it again to see if her response was the same. It was and I am much more ashamed to admit that we roared again. We did eventually get her quieted down, and put away anything else that was wrapped for a later time.
I was home by noon, and napping by one! Peggy (my best friend from childhood) picked me up at 5:30, and drove me to her house for Christmas Dinner. Her son, my god/dess son, Ian was home from Pitt, so the three of us exchanged gifts, and sat down to a wonderfully eclectic meal of stuffed salmon, green beans, pearl onions, homemade mashed potatoes, and cranberry-orange compote. Peg is a very good cook, and we sat around a bit drinking wine for a while.
Then Ian drove me home, came in, drank brandy and stayed to listen to me talk about the state of the world and my world in particular-an rare opportunity for me to vent a bit. And surprise Ian, too, because he has no real concept of my (or his mother's) life. As a trade off, he came up later in the week and unloaded his considerable misery on me, along with a lot of theories of comparative literature which are way above my head!
Ian left around 10PM Christmas night and I, who had joined him in a small amount of brandy, fell into my recliner/bed and slept the sleep on the righteous. All in all a good day.
Blessings, Margo
PS Don't drink and drive, but do enjoy your New Year's Eve!
I am only slightly ashamed to admit that her loving mother and adoring grandmother bust into laughter at her reaction! Then, of course, we had to try it again to see if her response was the same. It was and I am much more ashamed to admit that we roared again. We did eventually get her quieted down, and put away anything else that was wrapped for a later time.
I was home by noon, and napping by one! Peggy (my best friend from childhood) picked me up at 5:30, and drove me to her house for Christmas Dinner. Her son, my god/dess son, Ian was home from Pitt, so the three of us exchanged gifts, and sat down to a wonderfully eclectic meal of stuffed salmon, green beans, pearl onions, homemade mashed potatoes, and cranberry-orange compote. Peg is a very good cook, and we sat around a bit drinking wine for a while.
Then Ian drove me home, came in, drank brandy and stayed to listen to me talk about the state of the world and my world in particular-an rare opportunity for me to vent a bit. And surprise Ian, too, because he has no real concept of my (or his mother's) life. As a trade off, he came up later in the week and unloaded his considerable misery on me, along with a lot of theories of comparative literature which are way above my head!
Ian left around 10PM Christmas night and I, who had joined him in a small amount of brandy, fell into my recliner/bed and slept the sleep on the righteous. All in all a good day.
Blessings, Margo
PS Don't drink and drive, but do enjoy your New Year's Eve!
Monday, December 25, 2006
Have a Joyful and Blessed Christmas
To All my Friends in Blog-land,
Thank you all for your concern, prayers, help, laughter and comments!
On this Holy Day, I count myself Blessed.
Merry Christmas to all, and to all a Good Night.
With gratitude. Love, and Blessings,
Margo
Thank you all for your concern, prayers, help, laughter and comments!
On this Holy Day, I count myself Blessed.
Merry Christmas to all, and to all a Good Night.
With gratitude. Love, and Blessings,
Margo
Saturday, December 23, 2006
I Wish I Had a River
I wish I had a river
That I could skate away on...
Joni Mitchell
I have all my good enough Christmas plans in place. I am saving wrapping presents for tomorrow, so it will seem Christmas Eve-y. My new couch arrived, and it is absolutely wonderful. Meg has bought the cinnamon buns we always have Christmas morning. I am working very hard to be upbeat when I talk to anyone, and I definitely don't want to be a downer here.
But through my dark glasses, it feels as if even those I know who also suffer Christmas depression, who rush around too much and superhuman their ways through the Holiday madness into exhaustion, are doing better than I am. Mostly, I am lonely, a complaint I have whined over all year long. I have even had well meaning people offer advice ranging from relax and enjoy your solitude to well, get your butt out there and meet new people, join a group, volunteer, DO something. None of these people have been living with chronic pain, facing, then recovering, from major surgery. I have no doubt that I will do something as soon as I am able, but still I'm sad and alone, during all these long, boring days leading up to Christmas.
I have only to think of anyone who is incarcerated, or mourning the death of a loved one, or sick, or homeless, or hungry, or caught in a war over which they have no control, and I feel ashamed. I know as well as most, and better than some, that this is the season for giving, not throwing a pity party. A time to celebrate the renewing of light, both at Solstice and Hanukkah, and soon a celebration of family and heritage at Kwanzaa. A time to meditate on the birth of a child to a virgin, an event which many think is part of a cycle reaching back to ancient times. A time to be thankful for the family and friends I do have.
And I am thankful, truly, and do meditate on the meaning of the season, and, in my own small way celebrate, by having a tree and giving gifts. I have simply been stuck at home for too many days, with no way to get out and get moving. When I can drive, I will take my shiny bluewalker with the seat (for when I am dizzy or tired) and go people watch while I walk from one end to the other of the Mohegan Sun Casino- I live between the Sun and Foxwoods, which is the biggest casino in the western hemisphere. What a weird thing to have in the middle of the woods only 5 miles away!
I need to walk, and casinos are better than malls, because I spend less. (My gambling limit is $20 three times a year, and I stick to it.) Meanwhile, between bouts of misery and sorrow, I am working to be busy here inside, despite the gray days New England has been blessed with lately. I read journals, play online games and solitaires and roam the Internet. I sit on my new couch for a different view of the living room (in which I have been living, day and night, since October 20th). I am even sending out a few Christmas cards, though it is lucky that Christmas really ends on Twelthnight, or Three Kings' Day. This gives me plenty of time!
I really do wish those who love the holidays, or value the religious aspects of their holidays, or are lucky enough to be busy with family and friends and are loving it, the very best joy of the season. And for those who are struggling, I hope you can make it through the season with some sense of hope for the future. I know from personal experience that human nature is strong and resilient, and enables us to endure and even grow and change.
Blessings, Margo
That I could skate away on...
Joni Mitchell
I have all my good enough Christmas plans in place. I am saving wrapping presents for tomorrow, so it will seem Christmas Eve-y. My new couch arrived, and it is absolutely wonderful. Meg has bought the cinnamon buns we always have Christmas morning. I am working very hard to be upbeat when I talk to anyone, and I definitely don't want to be a downer here.
But through my dark glasses, it feels as if even those I know who also suffer Christmas depression, who rush around too much and superhuman their ways through the Holiday madness into exhaustion, are doing better than I am. Mostly, I am lonely, a complaint I have whined over all year long. I have even had well meaning people offer advice ranging from relax and enjoy your solitude to well, get your butt out there and meet new people, join a group, volunteer, DO something. None of these people have been living with chronic pain, facing, then recovering, from major surgery. I have no doubt that I will do something as soon as I am able, but still I'm sad and alone, during all these long, boring days leading up to Christmas.
I have only to think of anyone who is incarcerated, or mourning the death of a loved one, or sick, or homeless, or hungry, or caught in a war over which they have no control, and I feel ashamed. I know as well as most, and better than some, that this is the season for giving, not throwing a pity party. A time to celebrate the renewing of light, both at Solstice and Hanukkah, and soon a celebration of family and heritage at Kwanzaa. A time to meditate on the birth of a child to a virgin, an event which many think is part of a cycle reaching back to ancient times. A time to be thankful for the family and friends I do have.
And I am thankful, truly, and do meditate on the meaning of the season, and, in my own small way celebrate, by having a tree and giving gifts. I have simply been stuck at home for too many days, with no way to get out and get moving. When I can drive, I will take my shiny bluewalker with the seat (for when I am dizzy or tired) and go people watch while I walk from one end to the other of the Mohegan Sun Casino- I live between the Sun and Foxwoods, which is the biggest casino in the western hemisphere. What a weird thing to have in the middle of the woods only 5 miles away!
I need to walk, and casinos are better than malls, because I spend less. (My gambling limit is $20 three times a year, and I stick to it.) Meanwhile, between bouts of misery and sorrow, I am working to be busy here inside, despite the gray days New England has been blessed with lately. I read journals, play online games and solitaires and roam the Internet. I sit on my new couch for a different view of the living room (in which I have been living, day and night, since October 20th). I am even sending out a few Christmas cards, though it is lucky that Christmas really ends on Twelthnight, or Three Kings' Day. This gives me plenty of time!
I really do wish those who love the holidays, or value the religious aspects of their holidays, or are lucky enough to be busy with family and friends and are loving it, the very best joy of the season. And for those who are struggling, I hope you can make it through the season with some sense of hope for the future. I know from personal experience that human nature is strong and resilient, and enables us to endure and even grow and change.
Blessings, Margo
Sunday, December 17, 2006
Christmas is Coming
Christmas is coming,
The goose is getting fat,
Please put a penny in
The old man's hat.
If you haven't got a penny.
a ha'penny will do,
If you haven't got a ha'penny,
God bless you.
-Old English Carol
It's coming on Christmas
they're cutting down trees
putting up reindeer
and singing songs
of joy and peace
I wish i had a river
I could skate away on...
-Joni Mitchell
Christmas is coming, all too quickly for nearly everybody I know. I have been meditating a bit on how I feel this Christmas, and these two songs seem to sum it up. The former is one we sang at Shipley, the all girls school I attended from four to fourteen. I can still see us, in our short, forest green, pleated gym-type uniforms, over long sleeved white cotton blouses, all wearing wite socks, brown tie shoes and our forest green bloomers over clean while undies. There we stood, lined up by height (me at the left end of the back row) singing Ye Olde Englishe Christmas Caroles to our assembled parents, the fathers having been coerced into coming home early (by commuter train) at a time when they would have much rather worked late, then hit the club car before confronting family Christmas duties.
Never mind, I did learn all the words of lots of old British Carols, and they come floating back to me at odd moments of the holiday season. I learned a lot more Advent and Christmas Carols when I sang in my church choir for a decade or so, long ago. I especially love Advent carols. Surprised that this pagan was so active in a church choir? Shouldn't be-I have always been interested in religion, ever since I left my Episcopalian universe for a Quaker boarding school- a study in opposites that sent me on to (eventually) major in Comparative Religion, a truly useful major for a woman planning to be divorced and needing a job badly.
Anyway, as an adult I put in a decade of hard labor in a local church. I don't think anyone else in that church went to more retreats and study groups and Bible courses during that time period. In the end I realized that I kept banging my head on misogyny and homophobia, with which the same denomination is still struggling to this day. Good thing I didn't hang out, waiting for change. In reality, by the time I left the church, the Goddess, the feminine side of the Divine, had claimed me, and I could no more refuse Her than Paul on the road to Damascus could deny his own, more dramatic calling.
As I hum the first song, I think about the historical Jesus and his birth story. More than two millennium later, we know something of the outcome of this birth to a young single mother, already in labor, riding a donkey into a strange town teeming with others vying for room and board, all because of some governmental regulation about taxes. Mary (a Goddess figure if there ever was one) didn't know about Christmas or Christianity, she just gave birth in the straw, accepted first, shepherds, then (no doubt) curious townies, followed by three Kings bringing offerings of unthinkable wealth, along with a warning to get out of town quick. And off they set for Egypt on that donkey with a new born. No wonder she pondered all this in her heart. Any mother would.
Christmas has come a long way. Mostly downhill. I am not out in the Christmas Crush (being home bound, still, six weeks after surgery), but most of the people I talk to are either strung out with stress, or tired of the whole idea. And, since I am watching more television than usual, even I have not escaped the rampant consumerism. The ads are all about buy, buy, buy, buy, spend, spend, spend. That child born in the stable or cave or wherever, grew up to be a man who would be appalled by it all. I am absolutely sure of this.
If the historical Jesus was anything like the stories his life generated, he would be far more likely to be putting his last penny into an old man's hat (on his way to heal some lepers, no doubt, then on to teach those without any pennies about the power of Peace on Earth) than out buying one of his disciples' kids a Tickle Me Elmo. Which I will no doubt be buying for my granddaughter Myla next year. I am quite able to admit I don't always practice what I preach (and I bet Jesus himself didn't either. He was human, after all.)
The second song is also one I hum every Christmas. Depression always creeps up on me as Christmas nears. It has been a year since Rene moved out, and the second song is about lost love, so you might think I'm in an anniversary funk. Except that I have hummed it every Christmas for years, long before she came into my life. I suspect it is a generational thing. My grandmother had perfect-Christmas-itis. She passed it down to my mother, who passed it down to me.
In my childhood home there was always too much alcohol, a Christmas Tree fight, and some sort of mild catastrophe that sent my mother into a tailspin. Which I recreated for Meg, who miraculously seems to have escaped such a need for perfection. I have rid myself of the need for a perfect tree and family dinner, but somehow I cannot pull myself out of the depression which settles painfully around my shoulders like the dimming of the light that comes along with the Solstice, the shortest day of the year. (Solstice is a pagan celebration, and the reason that Christmas was moved to this time of year. Many Biblical scholars believe Jesus was born in the spring or early summer.)
Over the years I have gained several techniques to cope with this kind of depression. I have come back to the most helpful of these: choose five things that will "define" Christmas for me. If these five things happen, the I will count it as a "happy-enough" Christmas, and let go of other hopes, expectations, and fantasies. This year's five are:1) get a tree up 2) give gifts to those I love 3) buy myself a couple of small presents to open Christmas Day 4) spend time with Peggy, and her son Ian, who is my god(dess)son and 5) spend time with Meg, Myla and Adam. There is a sixth which I always do anyway; make a donation to charity.
Then I go about making sure these five things happen. Luckily, I have also learned to choose thing that are quite possible. The (small artificial) tree is up, and only needs a few decorations. I've ordered nearly all gifts on line-for those I love and myself. Peggy has invited me for dinner-some oddball, non traditional meal, I'm sure. And Meg has invited me for Christmas breakfast and gift opening- a meal I have organized for the last two decades. She is even more excited than I am!
There. Christmas is taken care of. It will not stop the dimness of depression completely- it never does-but it will somehow bring joy into a life which is still on hold as I wait for healing and change. I hope the man who was the historical Jesus, the latest in a long history of dying and rising gods born to a virgin mother, would understand.
Blessings, Joy and Peace,
Margo
The goose is getting fat,
Please put a penny in
The old man's hat.
If you haven't got a penny.
a ha'penny will do,
If you haven't got a ha'penny,
God bless you.
-Old English Carol
It's coming on Christmas
they're cutting down trees
putting up reindeer
and singing songs
of joy and peace
I wish i had a river
I could skate away on...
-Joni Mitchell
Christmas is coming, all too quickly for nearly everybody I know. I have been meditating a bit on how I feel this Christmas, and these two songs seem to sum it up. The former is one we sang at Shipley, the all girls school I attended from four to fourteen. I can still see us, in our short, forest green, pleated gym-type uniforms, over long sleeved white cotton blouses, all wearing wite socks, brown tie shoes and our forest green bloomers over clean while undies. There we stood, lined up by height (me at the left end of the back row) singing Ye Olde Englishe Christmas Caroles to our assembled parents, the fathers having been coerced into coming home early (by commuter train) at a time when they would have much rather worked late, then hit the club car before confronting family Christmas duties.
Never mind, I did learn all the words of lots of old British Carols, and they come floating back to me at odd moments of the holiday season. I learned a lot more Advent and Christmas Carols when I sang in my church choir for a decade or so, long ago. I especially love Advent carols. Surprised that this pagan was so active in a church choir? Shouldn't be-I have always been interested in religion, ever since I left my Episcopalian universe for a Quaker boarding school- a study in opposites that sent me on to (eventually) major in Comparative Religion, a truly useful major for a woman planning to be divorced and needing a job badly.
Anyway, as an adult I put in a decade of hard labor in a local church. I don't think anyone else in that church went to more retreats and study groups and Bible courses during that time period. In the end I realized that I kept banging my head on misogyny and homophobia, with which the same denomination is still struggling to this day. Good thing I didn't hang out, waiting for change. In reality, by the time I left the church, the Goddess, the feminine side of the Divine, had claimed me, and I could no more refuse Her than Paul on the road to Damascus could deny his own, more dramatic calling.
As I hum the first song, I think about the historical Jesus and his birth story. More than two millennium later, we know something of the outcome of this birth to a young single mother, already in labor, riding a donkey into a strange town teeming with others vying for room and board, all because of some governmental regulation about taxes. Mary (a Goddess figure if there ever was one) didn't know about Christmas or Christianity, she just gave birth in the straw, accepted first, shepherds, then (no doubt) curious townies, followed by three Kings bringing offerings of unthinkable wealth, along with a warning to get out of town quick. And off they set for Egypt on that donkey with a new born. No wonder she pondered all this in her heart. Any mother would.
Christmas has come a long way. Mostly downhill. I am not out in the Christmas Crush (being home bound, still, six weeks after surgery), but most of the people I talk to are either strung out with stress, or tired of the whole idea. And, since I am watching more television than usual, even I have not escaped the rampant consumerism. The ads are all about buy, buy, buy, buy, spend, spend, spend. That child born in the stable or cave or wherever, grew up to be a man who would be appalled by it all. I am absolutely sure of this.
If the historical Jesus was anything like the stories his life generated, he would be far more likely to be putting his last penny into an old man's hat (on his way to heal some lepers, no doubt, then on to teach those without any pennies about the power of Peace on Earth) than out buying one of his disciples' kids a Tickle Me Elmo. Which I will no doubt be buying for my granddaughter Myla next year. I am quite able to admit I don't always practice what I preach (and I bet Jesus himself didn't either. He was human, after all.)
The second song is also one I hum every Christmas. Depression always creeps up on me as Christmas nears. It has been a year since Rene moved out, and the second song is about lost love, so you might think I'm in an anniversary funk. Except that I have hummed it every Christmas for years, long before she came into my life. I suspect it is a generational thing. My grandmother had perfect-Christmas-itis. She passed it down to my mother, who passed it down to me.
In my childhood home there was always too much alcohol, a Christmas Tree fight, and some sort of mild catastrophe that sent my mother into a tailspin. Which I recreated for Meg, who miraculously seems to have escaped such a need for perfection. I have rid myself of the need for a perfect tree and family dinner, but somehow I cannot pull myself out of the depression which settles painfully around my shoulders like the dimming of the light that comes along with the Solstice, the shortest day of the year. (Solstice is a pagan celebration, and the reason that Christmas was moved to this time of year. Many Biblical scholars believe Jesus was born in the spring or early summer.)
Over the years I have gained several techniques to cope with this kind of depression. I have come back to the most helpful of these: choose five things that will "define" Christmas for me. If these five things happen, the I will count it as a "happy-enough" Christmas, and let go of other hopes, expectations, and fantasies. This year's five are:1) get a tree up 2) give gifts to those I love 3) buy myself a couple of small presents to open Christmas Day 4) spend time with Peggy, and her son Ian, who is my god(dess)son and 5) spend time with Meg, Myla and Adam. There is a sixth which I always do anyway; make a donation to charity.
Then I go about making sure these five things happen. Luckily, I have also learned to choose thing that are quite possible. The (small artificial) tree is up, and only needs a few decorations. I've ordered nearly all gifts on line-for those I love and myself. Peggy has invited me for dinner-some oddball, non traditional meal, I'm sure. And Meg has invited me for Christmas breakfast and gift opening- a meal I have organized for the last two decades. She is even more excited than I am!
There. Christmas is taken care of. It will not stop the dimness of depression completely- it never does-but it will somehow bring joy into a life which is still on hold as I wait for healing and change. I hope the man who was the historical Jesus, the latest in a long history of dying and rising gods born to a virgin mother, would understand.
Blessings, Joy and Peace,
Margo
Wednesday, December 06, 2006
Not So Good Day
Today has been a bad day-I have been hurting more than the last week or so. And I am once again feeling sad and lonely. I guess the two probably go together. I am down to taking pain pills twice a day (along with the fentynal patch I've been on for three years now), and spent the first half of the day waiting until the pain hit a level five and a half to take my first pain pill of the day.
I spent all day catching up on e-mail, going to various favorite sites and trying to convince myself that I am fine, just fine. And of course, in one way, I am fine. I saw my surgeon last week, and he was delighted, not to mention amazed that this long time diabetic healed so well (the incision, that is) and without any infection. He was beaming when he left, and was even nice to my worker's comp worker, who turned up to make sure I actually did have the surgery and am not ripping off the system.
Actually, she's okay, and has enabled me to take a cab to and from physical therapy, so I can go back to the people with whom I rehabbed the first time. Luckily I love them, because it will be a long, painful project. Ugh. On the other hand, I get the excitement of leaving the house twice a week, and even the 15 minute ride is out of the house! And it is 15 minutes, both ways! Such wild excitement.
I know that such good worker's comp treatment will end all too soon-probably by the end of the week, for I "ought" to be driving by now-never mind that I don't feel safe doing so. Not only will my free rides end, but my aide, too. Alas, I am still afraid of taking a shower alone, because if I am unsteady getting in or out, my first response is to reach out to brace myself with my right arm. A real no-no.
Part of my problem today is probably because Christmas is fast approaching, a difficult time for me.
Never mind, I've done my therapeutic crying for today, and tomorrow is almost here, and no doubt be better, or at least different.
Blessings, Margo
I spent all day catching up on e-mail, going to various favorite sites and trying to convince myself that I am fine, just fine. And of course, in one way, I am fine. I saw my surgeon last week, and he was delighted, not to mention amazed that this long time diabetic healed so well (the incision, that is) and without any infection. He was beaming when he left, and was even nice to my worker's comp worker, who turned up to make sure I actually did have the surgery and am not ripping off the system.
Actually, she's okay, and has enabled me to take a cab to and from physical therapy, so I can go back to the people with whom I rehabbed the first time. Luckily I love them, because it will be a long, painful project. Ugh. On the other hand, I get the excitement of leaving the house twice a week, and even the 15 minute ride is out of the house! And it is 15 minutes, both ways! Such wild excitement.
I know that such good worker's comp treatment will end all too soon-probably by the end of the week, for I "ought" to be driving by now-never mind that I don't feel safe doing so. Not only will my free rides end, but my aide, too. Alas, I am still afraid of taking a shower alone, because if I am unsteady getting in or out, my first response is to reach out to brace myself with my right arm. A real no-no.
Part of my problem today is probably because Christmas is fast approaching, a difficult time for me.
Never mind, I've done my therapeutic crying for today, and tomorrow is almost here, and no doubt be better, or at least different.
Blessings, Margo
Friday, December 01, 2006
World AIDS Day
Today is World AIDS Day. All day, I have been thinking of the women at the Women's Prison who are HIV positive, and their friends, those I never knew there, who died in the 80's and early 90's, usually alone, in the single cells of an infirmary full of nurse and doctors who, at best, didn't care and, at worst, were full of fear, disgust, even hatred towards all who had the disease.
It's better now, of course, if dying in prison can ever be "better." There is a great inmate-manned Hospice program, and no one dies alone anymore. And now far fewer die there of AIDS related illnesses, because of better meds and state mandated HIV medical protocols. And most nurses and doctors at least understand the illness, which takes some of the fear factor out. Some are still prejudiced and disgusted, though. Some are wonderful.
But, as one inmate told me, "It's a drag to have HIV in general, and worse in prison" because there is still stigma, lack of understanding, and real ignorance in the prison population, and a few correctional officers who can be cruel. [Most C.O.'s are good people, doing a good job, respectful of all inmates who stay out of trouble. HIV is just another illness to them-like diabetes or arthritis.]
Some of the inmates in my groups of positive women got HIV while in prison in the 80's. Back in the day, so my long term or recidivist positive women in would say, there was less vigilance and therefore more drugs in prison. Most of the time there was one underground needle for all those who used in prison. In the morning it would be in one side of the prison, in the afternoon the other side. Nobody knew about AIDS-or considered it a "gay disease"-so they took turns shooting up, passing the virus back and forth and all around. Their stories would make me cry.
Then somebody would remember some funny story about so-and-so who had AIDS, and suddenly the whole group of women-including me-would be roaring with laughter as one would leap up, take on another persona and act out the whole story.
I laughed more in those groups than I did anywhere else in my life. Then I would go back to my office and cry.
Of course, many woman got HIV from their husbands or partners, who used needles, or were on the down low. Some got the virus from working the streets, the only job they knew, to feed their children, or their habits. And in reality, it doesn't matter how anyone-men or women-acquired the virus. It is living with the virus that is important, getting into medical treatment and taking the meds correctly that is important.
I don't want this to turn into me standing on a soapbox, beating my breasts, and whining about the obvious. I came to care about those funny, manipulative, sacred, courageous, angry, frustrated, even dangerous women in my HIV positive groups.
I was also enraged by them, and those who were not (yet) positive. Some were in deep denial that they were at risk, or putting others at risk. A few were just uneducated about HIV, and many didn't know who to ask about the rumors they heard about HIV. Some care and use condoms when off drugs, but not when using. Some don't care at all.
As an HIV counselor, I tested people-inside the prison and out-and have been the one who had to tell people their tests came back positive. In a split second their lives became "before" and "after," a terrible experience for all. I likes the group and educational aspects of my former job best!
The sad thing is that we need a World AIDS Day at all. This is an epidemic that was preventable by the 90's, but our country's leadership, many of our churches, a lot of conservatives and middle-of-the -roaders refused to allocate funds for research (it was a gay disease, who cares?) or allow meaningful education to sully their, and more especially, their children's, ears.
Gee, come to think about it that part hasn't changed much-studies show that abstain only curriculums do not stop epidemics. Now many don't care because large numbers of African American and Hispanic women are turning positive now.
HIV/AIDS is now a World-Wide pandemic, rampant in Russia, China, India, and growing fast in South America. It is the only preventable pandemic, and especially (but not exclusively) in third world countries there is not enough money for life saving medication. And it is a disease of women and children. it makes me sad and angry and frustrated.
The point of this, I guess, is educate yourself, your children, your grandchildren, your neighbors and their children and grandchildren, even complete strangers if you have a chance. Nobody is completely immune. Educate your grandparents, your elderly widowed parent, for the elderly are a fast growing positive population. Be careful, negotiate sex with a new partner before you are in bed, use condoms, reach out and help (or hold) those who are positive, donate money to reputable programs that help with medication and education.
Today I am also remembering the gay men we lost to this epidemic. A whole generation of men who never got to live beyond their 20's or 30's. One guy I went to school with. A friend's brother. Several men I loved dearly. Those who pulled me into the fight against AIDS, to whom I am still grateful.
I hope that someday, maybe in my lifetime, but certainly in Meg's or Myla's, we will no longer need a World AIDS Day.
Blessings to all, especially those who are HIV positive, Margo
It's better now, of course, if dying in prison can ever be "better." There is a great inmate-manned Hospice program, and no one dies alone anymore. And now far fewer die there of AIDS related illnesses, because of better meds and state mandated HIV medical protocols. And most nurses and doctors at least understand the illness, which takes some of the fear factor out. Some are still prejudiced and disgusted, though. Some are wonderful.
But, as one inmate told me, "It's a drag to have HIV in general, and worse in prison" because there is still stigma, lack of understanding, and real ignorance in the prison population, and a few correctional officers who can be cruel. [Most C.O.'s are good people, doing a good job, respectful of all inmates who stay out of trouble. HIV is just another illness to them-like diabetes or arthritis.]
Some of the inmates in my groups of positive women got HIV while in prison in the 80's. Back in the day, so my long term or recidivist positive women in would say, there was less vigilance and therefore more drugs in prison. Most of the time there was one underground needle for all those who used in prison. In the morning it would be in one side of the prison, in the afternoon the other side. Nobody knew about AIDS-or considered it a "gay disease"-so they took turns shooting up, passing the virus back and forth and all around. Their stories would make me cry.
Then somebody would remember some funny story about so-and-so who had AIDS, and suddenly the whole group of women-including me-would be roaring with laughter as one would leap up, take on another persona and act out the whole story.
I laughed more in those groups than I did anywhere else in my life. Then I would go back to my office and cry.
Of course, many woman got HIV from their husbands or partners, who used needles, or were on the down low. Some got the virus from working the streets, the only job they knew, to feed their children, or their habits. And in reality, it doesn't matter how anyone-men or women-acquired the virus. It is living with the virus that is important, getting into medical treatment and taking the meds correctly that is important.
I don't want this to turn into me standing on a soapbox, beating my breasts, and whining about the obvious. I came to care about those funny, manipulative, sacred, courageous, angry, frustrated, even dangerous women in my HIV positive groups.
I was also enraged by them, and those who were not (yet) positive. Some were in deep denial that they were at risk, or putting others at risk. A few were just uneducated about HIV, and many didn't know who to ask about the rumors they heard about HIV. Some care and use condoms when off drugs, but not when using. Some don't care at all.
As an HIV counselor, I tested people-inside the prison and out-and have been the one who had to tell people their tests came back positive. In a split second their lives became "before" and "after," a terrible experience for all. I likes the group and educational aspects of my former job best!
The sad thing is that we need a World AIDS Day at all. This is an epidemic that was preventable by the 90's, but our country's leadership, many of our churches, a lot of conservatives and middle-of-the -roaders refused to allocate funds for research (it was a gay disease, who cares?) or allow meaningful education to sully their, and more especially, their children's, ears.
Gee, come to think about it that part hasn't changed much-studies show that abstain only curriculums do not stop epidemics. Now many don't care because large numbers of African American and Hispanic women are turning positive now.
HIV/AIDS is now a World-Wide pandemic, rampant in Russia, China, India, and growing fast in South America. It is the only preventable pandemic, and especially (but not exclusively) in third world countries there is not enough money for life saving medication. And it is a disease of women and children. it makes me sad and angry and frustrated.
The point of this, I guess, is educate yourself, your children, your grandchildren, your neighbors and their children and grandchildren, even complete strangers if you have a chance. Nobody is completely immune. Educate your grandparents, your elderly widowed parent, for the elderly are a fast growing positive population. Be careful, negotiate sex with a new partner before you are in bed, use condoms, reach out and help (or hold) those who are positive, donate money to reputable programs that help with medication and education.
Today I am also remembering the gay men we lost to this epidemic. A whole generation of men who never got to live beyond their 20's or 30's. One guy I went to school with. A friend's brother. Several men I loved dearly. Those who pulled me into the fight against AIDS, to whom I am still grateful.
I hope that someday, maybe in my lifetime, but certainly in Meg's or Myla's, we will no longer need a World AIDS Day.
Blessings to all, especially those who are HIV positive, Margo
Saturday, November 25, 2006
Giving Thanks
Not surprisingly, I have been meditating on giving thanks these last few days. Mostly I have always given thanks for the good things in my life-Meg, Myla, family and friends, the beauty of where I live, my partner and job, the food on the table, the abundance in my life.
This year, I have come far enough to be thankful-at least to some degree-for the difficulties life has handed me in the last three and a half years. I have lost both job and partner, ice cream comfort eating and 200 pounds, friends and financial comfort, my sense of balance and independence, and more. But because of all this, I have had time, days and days of time.
I've spent a lot of those days in serious pain, physical and emotional. I have cried me a river, fallen into the dark pit of depression and been stuck there, and crawled out, almost literally. I have had surgery four times, rehabbed three times and am in the beginning stages of my fourth. My years as a diabetic caught up with me-I'm dizzy a lot, cannot feel my feet, and now fall a lot. And more.
But, as I meditate this weekend of thanks, I realize I am grateful, and blessed, to have adjusted enough to be happy sometimes. Despite it all, I like the life I have now, and the one I see just over the horizon. I have more surgery ahead of me, this time to remove the approximately 15 or more pounds of hanging skin left by my weight loss. But I now believe I will eventually get back to my HIV poz women in prison, and find other ways to volunteer in the community, hopefully with women.
And I am beginning to make new friends, slowly, and mostly online, but it is a start. Of course, I've had Peggy as a friend forever-53 years to be exact! What a gift to be thankful for. I really like living alone right now, too, even though at the moment I am relegated to the first floor only. I love my antiques and tatty old furniture and mismatched chairs. And I can keep it as clean-or cluttered-as I want to. [I am sure Rene feels the same!]
I find this all quite amazing. I really hadn't noticed that some happiness had crept into my life and lingered. I knew that sometimes l felt happy, but then some huge chunk of reality [like needing a walker, or no help when I got home from the hospital] would land on my head and knock me flat for a while, but these days when the crisis headache is over, life looks good again. Quite amazing, all things considered.
I am grateful that I can recognize that even when life throws me curve after curve, I can call on Warrior Woman to come to my aid, and can be strong and grounded and keep on getting up. Completely alone and on my own, if necessary.
A good recognition for a Thanksgiving Weekend, and I am truly grateful.
Blessings, Margo
PS Rene has begun posting again occasionally in her journal Growing Old Younger, over at aol, and often posts stuff I enjoy thinking over. M.
This year, I have come far enough to be thankful-at least to some degree-for the difficulties life has handed me in the last three and a half years. I have lost both job and partner, ice cream comfort eating and 200 pounds, friends and financial comfort, my sense of balance and independence, and more. But because of all this, I have had time, days and days of time.
I've spent a lot of those days in serious pain, physical and emotional. I have cried me a river, fallen into the dark pit of depression and been stuck there, and crawled out, almost literally. I have had surgery four times, rehabbed three times and am in the beginning stages of my fourth. My years as a diabetic caught up with me-I'm dizzy a lot, cannot feel my feet, and now fall a lot. And more.
But, as I meditate this weekend of thanks, I realize I am grateful, and blessed, to have adjusted enough to be happy sometimes. Despite it all, I like the life I have now, and the one I see just over the horizon. I have more surgery ahead of me, this time to remove the approximately 15 or more pounds of hanging skin left by my weight loss. But I now believe I will eventually get back to my HIV poz women in prison, and find other ways to volunteer in the community, hopefully with women.
And I am beginning to make new friends, slowly, and mostly online, but it is a start. Of course, I've had Peggy as a friend forever-53 years to be exact! What a gift to be thankful for. I really like living alone right now, too, even though at the moment I am relegated to the first floor only. I love my antiques and tatty old furniture and mismatched chairs. And I can keep it as clean-or cluttered-as I want to. [I am sure Rene feels the same!]
I find this all quite amazing. I really hadn't noticed that some happiness had crept into my life and lingered. I knew that sometimes l felt happy, but then some huge chunk of reality [like needing a walker, or no help when I got home from the hospital] would land on my head and knock me flat for a while, but these days when the crisis headache is over, life looks good again. Quite amazing, all things considered.
I am grateful that I can recognize that even when life throws me curve after curve, I can call on Warrior Woman to come to my aid, and can be strong and grounded and keep on getting up. Completely alone and on my own, if necessary.
A good recognition for a Thanksgiving Weekend, and I am truly grateful.
Blessings, Margo
PS Rene has begun posting again occasionally in her journal Growing Old Younger, over at aol, and often posts stuff I enjoy thinking over. M.
Saturday, November 18, 2006
An Interesting Week?
I would like to make an interesting entry about almost anything, but it's been a long, slow week. And practically nothing has happened. Again, this is not a complaint. Life is what it is. Sharon, my aide comes in for two hours three days a week. She helps me shower, does a bit of light housework, visit for a while, then is gone.
A nurse drops by once or twice a week to take my BP, listen to my lungs and heart, and change my bandage, for I have developed a "chair sore" on my coccyx. I would sit less, but my downstairs is basically four rooms, and that is my world at the moment. I'd go out for a walk, but it's difficult to use my walker left handed. And getting it down the porch steps, let alone back up, is problamatic.
Of course, I did have a couple of exciting moments last night. I got up, stood still briefly, assessed myself as not dizzy, took two steps into the hall, and quickly realized I was not only dizzy, but would never make it to a chair. [ I have chairs placed strategically throughout the house.] Knowing that my surgeon has forbidden me to fall, lest I undo all his brilliant work, I had a true moment of panic. Then, in a second of brilliance, I threw myself against the wall, back first.
I slid down the wall rather too fast and landed hard on my no longer ample rear end, irritating my "chair sore" no end (pun intended). I sat there a while, wondering how on earth I was going to get up. Then I gathered myself together, scooted across the floor to the phone, and called 911 for lifting help, for I could not for the life of me figure out how to get up without using my right shoulder.
Neither could the two firefighters who soon arrived. They usually lift people by the shoulders, and were rather surprised at my vehemence when I declined that option. They brainstormed ineffectually until I turned over onto my knees. One grabbed my left shoulder, the other grabbed me around the waist and both hauled up. A lovely, graceful moment, one of so many in my recent life. I did thank them profusely, though I had come way too close to screaming in pain.
Then I had to report the fall to Meg, who somehow managed to elicit a promise from me to tell her whenever I have to call 911. Luckily, it was very late and she has to get up at 3:15 AM, so I could leave a reassuring message on her machine. Of course she did call me back at 4:45 AM, just before she left for work, to make sure I really was okay. Glad that is over, at least for now. Eventually she'll use all this as ammo for putting me in some old folks home by the time I'm 60! [NOT] :)
That's what has been happening in my life; remind me not to complain when life gets busy again. I get giddy thinking about the freedom of driving again! Soon I'll be able to run my own errands, do my on shopping, escape from these four small rooms! Only another week or two, to live through. Then I can complain about being tired all the time again. :)
Blessings, Margo
A nurse drops by once or twice a week to take my BP, listen to my lungs and heart, and change my bandage, for I have developed a "chair sore" on my coccyx. I would sit less, but my downstairs is basically four rooms, and that is my world at the moment. I'd go out for a walk, but it's difficult to use my walker left handed. And getting it down the porch steps, let alone back up, is problamatic.
Of course, I did have a couple of exciting moments last night. I got up, stood still briefly, assessed myself as not dizzy, took two steps into the hall, and quickly realized I was not only dizzy, but would never make it to a chair. [ I have chairs placed strategically throughout the house.] Knowing that my surgeon has forbidden me to fall, lest I undo all his brilliant work, I had a true moment of panic. Then, in a second of brilliance, I threw myself against the wall, back first.
I slid down the wall rather too fast and landed hard on my no longer ample rear end, irritating my "chair sore" no end (pun intended). I sat there a while, wondering how on earth I was going to get up. Then I gathered myself together, scooted across the floor to the phone, and called 911 for lifting help, for I could not for the life of me figure out how to get up without using my right shoulder.
Neither could the two firefighters who soon arrived. They usually lift people by the shoulders, and were rather surprised at my vehemence when I declined that option. They brainstormed ineffectually until I turned over onto my knees. One grabbed my left shoulder, the other grabbed me around the waist and both hauled up. A lovely, graceful moment, one of so many in my recent life. I did thank them profusely, though I had come way too close to screaming in pain.
Then I had to report the fall to Meg, who somehow managed to elicit a promise from me to tell her whenever I have to call 911. Luckily, it was very late and she has to get up at 3:15 AM, so I could leave a reassuring message on her machine. Of course she did call me back at 4:45 AM, just before she left for work, to make sure I really was okay. Glad that is over, at least for now. Eventually she'll use all this as ammo for putting me in some old folks home by the time I'm 60! [NOT] :)
That's what has been happening in my life; remind me not to complain when life gets busy again. I get giddy thinking about the freedom of driving again! Soon I'll be able to run my own errands, do my on shopping, escape from these four small rooms! Only another week or two, to live through. Then I can complain about being tired all the time again. :)
Blessings, Margo
Sunday, November 12, 2006
House Bound
House Bound
Well, I am still here and healing [way too slowly] in Southeastern Connecticut. I am being well taken care of by an aide who comes to help two hours three days a week, and a nurse who comes once a week. My staples came out Monday, and Wednesday and Friday I had real showers, thanks to Irene and Sharon, my aides. Alleluia!
My PA says the outside is healing nicely, and I've started occupational therapy too, to begin breaking up scar tissue...holy shit from a holy cow! I had forgotten-or blocked-this kind of pain from 3 years ago. There are not enough pain pills in the whole universe to mitigate the pain of breaking up shoulder scar tissue!
But mostly I'm bored. I have been "home bound" for three weeks now, except for two outings to the doctors, and one to vote. I can't drive, and probably won't for another few weeks-at least. As long as I'm stuck here, I can continue to receive services here. And even after I can drive, it will be for short distances only.
Now I sound as if I am whining. I am not. I am grateful to be on the other side of this surgery, knowing that eventually I will have a life to build, though it is not yet clear in what direction.
Meanwhile, after three full weeks of sitting (and sleeping) in my recliner, I have decided that I hate my living room. Well, not all of it. I love the paintings on the walls, one of which is Hope, one of Judi HeartSong's Light Series. She is blue and silver and her eyes follow me when I move around. Her name says it all; the wise, knowing eyes have given me hope enough to move on, time after time.
I also love my antiques, an old, handmade sled on legs, which I use as a way too small coffee table, and my Pennsylvania Dutch all wooden pie safe bureau, both of which my mother gave me, along with a huge old copper apple butter bucket. I have filled it with homemade dolls and bears and other stuffed animals. And I love my fireplace, which now has a propane fire in it, complete with remote control(!).
And, although it is way too big, I'm okay with the TV console, which is tall and wooden. It holds a lot of stuff, though, and keeps the corner of the room anchored.
That leaves the sofa. It is a perfectly fine sofa, well made, fits the space, a Forrest green, now with a rose slipcover on it for a change of pace, and I've had it fewer than 10 years. I have come to focus all my hatred on this poor, innocent piece of furniture. It sits under the bay window, and every time I look out the window, I am stabbed with my irrational hatred.
The sofa came from neighbors when they upgraded to leather. I know they spent a lot of time and money on finding it. I know it will probably last another ten years. I know it is reasonably stylish, though plain. I know I hate it. unreasonably.
So yesterday i asked Peggy to smuggle me out of the house (remember, I'm supposed to be house bound) to the store where i bough my recliner. i had seen a sofa there that i loved, but had worked hard to put out of my mind. it is too blue. it is too rough. it is way too big for my overarmed living room. it has red flowered pillows. it has an ottoman that covers one square mile. It was way, way too expensive.
I love it. I bought it all, including the ottoman. I must be crazy.
I am going to have to completely rearrange the living room, get rid of some pieces I love (or al least move them upstairs) rehang pictures all over the room, and all at a time when I cannot lift my right arm up to my shoulder without screaming. Although the sofa won't arrive for a month or so, I suspect poor Peg and Robin, who have been my support system throughout, will end up doing all the dirty work!
Still, I can't wait. I have only had one new sofa in my life, which I bought as a newlywed. I loved it, but it began to fall apart after about 15 years. I let it go sadly when we were given a secondhand couch by a neighbor. (There seems to be a pattern there.) Though not my taste at all, it lasted until I received the sturdy, innocuous one I have now.
Don't you think I deserve a new sofa every 36 years or so? I do. and thank goddess I have nobody to consult or ask permission! I'll let you all know how it all works out.
Blessings, Margo
Well, I am still here and healing [way too slowly] in Southeastern Connecticut. I am being well taken care of by an aide who comes to help two hours three days a week, and a nurse who comes once a week. My staples came out Monday, and Wednesday and Friday I had real showers, thanks to Irene and Sharon, my aides. Alleluia!
My PA says the outside is healing nicely, and I've started occupational therapy too, to begin breaking up scar tissue...holy shit from a holy cow! I had forgotten-or blocked-this kind of pain from 3 years ago. There are not enough pain pills in the whole universe to mitigate the pain of breaking up shoulder scar tissue!
But mostly I'm bored. I have been "home bound" for three weeks now, except for two outings to the doctors, and one to vote. I can't drive, and probably won't for another few weeks-at least. As long as I'm stuck here, I can continue to receive services here. And even after I can drive, it will be for short distances only.
Now I sound as if I am whining. I am not. I am grateful to be on the other side of this surgery, knowing that eventually I will have a life to build, though it is not yet clear in what direction.
Meanwhile, after three full weeks of sitting (and sleeping) in my recliner, I have decided that I hate my living room. Well, not all of it. I love the paintings on the walls, one of which is Hope, one of Judi HeartSong's Light Series. She is blue and silver and her eyes follow me when I move around. Her name says it all; the wise, knowing eyes have given me hope enough to move on, time after time.
I also love my antiques, an old, handmade sled on legs, which I use as a way too small coffee table, and my Pennsylvania Dutch all wooden pie safe bureau, both of which my mother gave me, along with a huge old copper apple butter bucket. I have filled it with homemade dolls and bears and other stuffed animals. And I love my fireplace, which now has a propane fire in it, complete with remote control(!).
And, although it is way too big, I'm okay with the TV console, which is tall and wooden. It holds a lot of stuff, though, and keeps the corner of the room anchored.
That leaves the sofa. It is a perfectly fine sofa, well made, fits the space, a Forrest green, now with a rose slipcover on it for a change of pace, and I've had it fewer than 10 years. I have come to focus all my hatred on this poor, innocent piece of furniture. It sits under the bay window, and every time I look out the window, I am stabbed with my irrational hatred.
The sofa came from neighbors when they upgraded to leather. I know they spent a lot of time and money on finding it. I know it will probably last another ten years. I know it is reasonably stylish, though plain. I know I hate it. unreasonably.
So yesterday i asked Peggy to smuggle me out of the house (remember, I'm supposed to be house bound) to the store where i bough my recliner. i had seen a sofa there that i loved, but had worked hard to put out of my mind. it is too blue. it is too rough. it is way too big for my overarmed living room. it has red flowered pillows. it has an ottoman that covers one square mile. It was way, way too expensive.
I love it. I bought it all, including the ottoman. I must be crazy.
I am going to have to completely rearrange the living room, get rid of some pieces I love (or al least move them upstairs) rehang pictures all over the room, and all at a time when I cannot lift my right arm up to my shoulder without screaming. Although the sofa won't arrive for a month or so, I suspect poor Peg and Robin, who have been my support system throughout, will end up doing all the dirty work!
Still, I can't wait. I have only had one new sofa in my life, which I bought as a newlywed. I loved it, but it began to fall apart after about 15 years. I let it go sadly when we were given a secondhand couch by a neighbor. (There seems to be a pattern there.) Though not my taste at all, it lasted until I received the sturdy, innocuous one I have now.
Don't you think I deserve a new sofa every 36 years or so? I do. and thank goddess I have nobody to consult or ask permission! I'll let you all know how it all works out.
Blessings, Margo
Monday, October 30, 2006
this too shall pass
well, i never made it to a nursing home. i got caught in workers' comp hell. it's a long story, too long to type with my left hand, but suffice it to say that i was home alone for most of the last week, fighting with my case worker, who had hired a healthcare company that kept no-showing. Wednesday, i fired them- a heady moment-and called my worker to demand a new company, and my lawyer to back me up, and the new company arrived early Friday morning.
and that's the short version!
i did have some help, mostly from peggy, who has stopped by most days, from robin, who calls daily, and twice from the local visiting nurses, despite my case worker's angry statement they would not get paid.[i've already spoken to my lawyer-they will get paid!]
so how have i been? you may well ask. well, i made it through, through my pain, my loneliness, my rage, my fear of falling-I did go down once, but managed to land softly and get up-my anger over my situation, my inability to take the tops off my meds or crush them, my continuing doubts that surgery was the wrong choice, and way too many hours of television, because anesthesia messes up my ability to retain what i read.
i have also been feeling sad and alone in the world. but i have once again been caught in the cycle of asking myself why i have so few friends. something i've done? or not done? with my head, i recognize it has been because i have been out of work-and out of the world-for over three years now. but emotionally it feels as if it is something i've done wrong. this too shall pass, it always does
and why has my daughter not been around at all, to drop by with[or even without] myla? i know she is working 60 to 70 hours a week, has the baby, and adam just moved in last week. also, all three of them have been miserably sick, especially myla who can't breath and nurse at the same time, and keeps screaming with frustration. just a few small things, you know, :) still, i miss her.
today i had my first check up post surgery. i am doing well, all things considered, but have to keep the staples for another week. it may well be three or four weeks before i can drive. on the other hand, i can start mild occupational therapy here at home. it is a small step towards having a life again.
blessings, margo
and that's the short version!
i did have some help, mostly from peggy, who has stopped by most days, from robin, who calls daily, and twice from the local visiting nurses, despite my case worker's angry statement they would not get paid.[i've already spoken to my lawyer-they will get paid!]
so how have i been? you may well ask. well, i made it through, through my pain, my loneliness, my rage, my fear of falling-I did go down once, but managed to land softly and get up-my anger over my situation, my inability to take the tops off my meds or crush them, my continuing doubts that surgery was the wrong choice, and way too many hours of television, because anesthesia messes up my ability to retain what i read.
i have also been feeling sad and alone in the world. but i have once again been caught in the cycle of asking myself why i have so few friends. something i've done? or not done? with my head, i recognize it has been because i have been out of work-and out of the world-for over three years now. but emotionally it feels as if it is something i've done wrong. this too shall pass, it always does
and why has my daughter not been around at all, to drop by with[or even without] myla? i know she is working 60 to 70 hours a week, has the baby, and adam just moved in last week. also, all three of them have been miserably sick, especially myla who can't breath and nurse at the same time, and keeps screaming with frustration. just a few small things, you know, :) still, i miss her.
today i had my first check up post surgery. i am doing well, all things considered, but have to keep the staples for another week. it may well be three or four weeks before i can drive. on the other hand, i can start mild occupational therapy here at home. it is a small step towards having a life again.
blessings, margo
Monday, October 23, 2006
doing well, all things considered
well, i made it through shoulder surgery, hospitazation and home to my wonderful house, roxy the chihuahua's extatic joy, and a small bit of indepedance. and now, after a couple of days at home, i'm headed back to a rehab hosital.
and i am not wildly happy about it, either. but i see no other option. i am unstable on my feet, and in pain and on medication. i can only face so much, and struggling to live left handedly with all the above problems.
so when the visiting nurse finally showed up this afternoon there was a very,very small flash of relief when she said she thought i was too much of a risk to be alone right now. there was also rage and grief and something close to murderous frustration. i spent weeks preparing for surgery, and my time in the hospital, and i'd asked for a consultation from o.t. before i left. i was completely honest with him, and he was either stupid, or not listening to me.
and the visiting nurses should have gotten someone out here on sat, not mon late afternoon, espicially since i called then each day, requesting help.[what part of "i need help" did they not understand?] i also called other visiting nurses associations and the hospital, and nobody offered so much as a suggrestion. very,very frustrating!
so i'll be gone for another week or so, but i'll be woking hard to get home asap. and that's the news from here in sotheastern connecticut.
blessings, margo
and i am not wildly happy about it, either. but i see no other option. i am unstable on my feet, and in pain and on medication. i can only face so much, and struggling to live left handedly with all the above problems.
so when the visiting nurse finally showed up this afternoon there was a very,very small flash of relief when she said she thought i was too much of a risk to be alone right now. there was also rage and grief and something close to murderous frustration. i spent weeks preparing for surgery, and my time in the hospital, and i'd asked for a consultation from o.t. before i left. i was completely honest with him, and he was either stupid, or not listening to me.
and the visiting nurses should have gotten someone out here on sat, not mon late afternoon, espicially since i called then each day, requesting help.[what part of "i need help" did they not understand?] i also called other visiting nurses associations and the hospital, and nobody offered so much as a suggrestion. very,very frustrating!
so i'll be gone for another week or so, but i'll be woking hard to get home asap. and that's the news from here in sotheastern connecticut.
blessings, margo
Monday, October 16, 2006
My Parents' Visit
My parents arrived last Wednesday, and left this morning. It was, as always, a difficult visit, but also a good one. My Mom is 81, my Dad is 83. They have been married 58 years, some good, many bad. Interestingly enough my mother denies there were many bad years, even though, during my late childhood and young adulthood, I remember her telling me how stuck she felt, how she would leave him, but had no way to support herself. I also remember acting as go-between, going from room to room, telling each what the other said. ( I am the eldest child, and took care of a lot of things.) I remember more than my siblings, because I was my mother's eldest, her confident.
Three years ago, the day before I fell at work, she was diagnosed with bowel cancer, after years of refusing a colonoscopy because "it was too embarrassing." My brother called the next evening to demand I get to the Poconos ASAP. Alas, I was in no shape to travel, and Mom was in no emotional shape to come to the phone.
We didn't connect for the over month, while I struggled in the hospital, then at home, and she had had surgery, too, and eventually chemo. When we did finally talk on the phone, all I could do was cry and ask her to keep fighting to live.
It was a terrible time for both of us. But, while the seeds of separation were being sowed between Rene and me, my parents marriage began to get better. My father recognized he couldn't imagine life without her, no matter how nitpicky she is. And my mother decided she didn't want to die yet (though she came terribly close), and was surprised that my father came to the hospital everyday to sit with her. I think Mom suddenly recognized that, in his own inarticulate way, he did love her, and she did love him despite his many foibles.
I now find them funny and frustrating, interesting and irritating, stupid and wise, sniping at each other and taking care of each other, the synthesis of 58 years together, good and bad. I cried when they left, hoping like hell that they will make it to next spring, when I can see them again. They leave the Poconos soon, to go back to Denver, where they live eight months a year. I will miss them.
We didn't do much on this visit. Mom was not feeling well, and Dad was happy to hang out doing crossword puzzles and reading the newspaper. I had wanted to take her to see the ocean again, but instead we spent four hours in the ER. The night before they came, she fell and banged her head hard, but, intent on getting to CT, she stemmed the bleeding, and refused to go to the hospital. She refused Wednesday night when I told her she should go, all day Thursday, and most of Friday. She is a stubborn woman.
Finally she muttered that her headache was getting worse, and her vision was blurred. The next thing she knew, I had taken over, and we were on our way to the ER. After a long wait and a CAT scan, a doctor said she was lucky, had no bleeding in the brain. Because she is profoundly deaf, I had to explain what a brain bleed could mean, and why she should have gone earlier. And yet, oddly enough, our time together at the hospital was quite enjoyable a time to talk, catch up, enjoy each other.
My father and I went to the grocery store together, so I could buy food for my recovery. He kept me laughing by talking about their grocery shopping together. Mom makes the list, splits it, and each take a cart and a separate section of the store. Dad's idea is to finish as fast as possible, throwing items in his cart as he hustles (as much as an 83 year old man can hustle) down the aisles she has assigned to him.
My mother, on the other hand, is slow, looking for just the right chicken, detergent, frozen dinner, reading labels as she creeps down her aisles. Dad finishes first, of course, and stand at the front of the store, metaphorically tapping his feet, holding his impatience in check. Finally Mom finishes, finds him, sends him back for the correct items that he missed, and finally they check out together.
I just laughed, and told him to follow along, not worry about getting the correct items, and he happily followed me around the store, then just as happily paid for my groceries-an added gift for me!
We also got together for breakfast with Kevin and Betsy, Rene's brother and sister-in-law and it was really wonderful to see them again, They were family for 14 years, and I miss hanging out with them. Kevin is kind enough to offer to help me with projects around the house, and occasionally I take him up on his offer for small jobs.
Then, that afternoon, we went to Rene's for coffee. It was the first time she has invited me to see her new house, and it was great to see how happy she was to see my parents-who were, afterall, her family for 14 years, too. I was interested to see what she had done with her house, and it was very Rene, indeed, with Disney stuff everywhere and three desk areas for all the work she does, on line, and cutting articles out of three newspapers, to put in her history journals. She did admit that she had done a lot of cleaning up to get the house ready for our tour.
It was really nice to see her and her environment, but painful that she never asked me how I'm doing, or commented on my weight loss. or wished me good luck with the surgery on Thursday. I felt left out, and sad. I still miss her presence in my life, though I know our decision to split was the right one. I don't know if she will ever get over her anger, or if I can let go of some of the cutting things she said at the end. Breaking up is hard to do, to coin a phrase.
My parents enjoyed seeing her a lot, and I am thankful to her that she invited us up to see her.
Now, it is time to turn my mind towards surgery. I need to catch up on housework, bring clothes downstairs, because I won't be climbing the stairs, for fear of falling. I have been ordered not to fall for at least six months post-op, a scary proposition for someone who falls hard at least a couple of times a month.
I also have to prepare mentally, put myself into a positive, relaxed and trusting place, because I believe we heal better when we can connect the spiritual component of life to our bodies.
I also realize that I will not be able to make entries in my journal or make comments in those I read for a long time after surgery, so I seem to be writing a more often, with longer entries than in the past. I have been living a bit more vicariously through the journals that I read, recently, and I think that has to do with Meg going back to work 60 to 70 hours a week, and my need to prepare for surgery.
Someday, I will have a busier, more meaningful life, but now is the time to put energy into recovery.
Blessings, Margo
Three years ago, the day before I fell at work, she was diagnosed with bowel cancer, after years of refusing a colonoscopy because "it was too embarrassing." My brother called the next evening to demand I get to the Poconos ASAP. Alas, I was in no shape to travel, and Mom was in no emotional shape to come to the phone.
We didn't connect for the over month, while I struggled in the hospital, then at home, and she had had surgery, too, and eventually chemo. When we did finally talk on the phone, all I could do was cry and ask her to keep fighting to live.
It was a terrible time for both of us. But, while the seeds of separation were being sowed between Rene and me, my parents marriage began to get better. My father recognized he couldn't imagine life without her, no matter how nitpicky she is. And my mother decided she didn't want to die yet (though she came terribly close), and was surprised that my father came to the hospital everyday to sit with her. I think Mom suddenly recognized that, in his own inarticulate way, he did love her, and she did love him despite his many foibles.
I now find them funny and frustrating, interesting and irritating, stupid and wise, sniping at each other and taking care of each other, the synthesis of 58 years together, good and bad. I cried when they left, hoping like hell that they will make it to next spring, when I can see them again. They leave the Poconos soon, to go back to Denver, where they live eight months a year. I will miss them.
We didn't do much on this visit. Mom was not feeling well, and Dad was happy to hang out doing crossword puzzles and reading the newspaper. I had wanted to take her to see the ocean again, but instead we spent four hours in the ER. The night before they came, she fell and banged her head hard, but, intent on getting to CT, she stemmed the bleeding, and refused to go to the hospital. She refused Wednesday night when I told her she should go, all day Thursday, and most of Friday. She is a stubborn woman.
Finally she muttered that her headache was getting worse, and her vision was blurred. The next thing she knew, I had taken over, and we were on our way to the ER. After a long wait and a CAT scan, a doctor said she was lucky, had no bleeding in the brain. Because she is profoundly deaf, I had to explain what a brain bleed could mean, and why she should have gone earlier. And yet, oddly enough, our time together at the hospital was quite enjoyable a time to talk, catch up, enjoy each other.
My father and I went to the grocery store together, so I could buy food for my recovery. He kept me laughing by talking about their grocery shopping together. Mom makes the list, splits it, and each take a cart and a separate section of the store. Dad's idea is to finish as fast as possible, throwing items in his cart as he hustles (as much as an 83 year old man can hustle) down the aisles she has assigned to him.
My mother, on the other hand, is slow, looking for just the right chicken, detergent, frozen dinner, reading labels as she creeps down her aisles. Dad finishes first, of course, and stand at the front of the store, metaphorically tapping his feet, holding his impatience in check. Finally Mom finishes, finds him, sends him back for the correct items that he missed, and finally they check out together.
I just laughed, and told him to follow along, not worry about getting the correct items, and he happily followed me around the store, then just as happily paid for my groceries-an added gift for me!
We also got together for breakfast with Kevin and Betsy, Rene's brother and sister-in-law and it was really wonderful to see them again, They were family for 14 years, and I miss hanging out with them. Kevin is kind enough to offer to help me with projects around the house, and occasionally I take him up on his offer for small jobs.
Then, that afternoon, we went to Rene's for coffee. It was the first time she has invited me to see her new house, and it was great to see how happy she was to see my parents-who were, afterall, her family for 14 years, too. I was interested to see what she had done with her house, and it was very Rene, indeed, with Disney stuff everywhere and three desk areas for all the work she does, on line, and cutting articles out of three newspapers, to put in her history journals. She did admit that she had done a lot of cleaning up to get the house ready for our tour.
It was really nice to see her and her environment, but painful that she never asked me how I'm doing, or commented on my weight loss. or wished me good luck with the surgery on Thursday. I felt left out, and sad. I still miss her presence in my life, though I know our decision to split was the right one. I don't know if she will ever get over her anger, or if I can let go of some of the cutting things she said at the end. Breaking up is hard to do, to coin a phrase.
My parents enjoyed seeing her a lot, and I am thankful to her that she invited us up to see her.
Now, it is time to turn my mind towards surgery. I need to catch up on housework, bring clothes downstairs, because I won't be climbing the stairs, for fear of falling. I have been ordered not to fall for at least six months post-op, a scary proposition for someone who falls hard at least a couple of times a month.
I also have to prepare mentally, put myself into a positive, relaxed and trusting place, because I believe we heal better when we can connect the spiritual component of life to our bodies.
I also realize that I will not be able to make entries in my journal or make comments in those I read for a long time after surgery, so I seem to be writing a more often, with longer entries than in the past. I have been living a bit more vicariously through the journals that I read, recently, and I think that has to do with Meg going back to work 60 to 70 hours a week, and my need to prepare for surgery.
Someday, I will have a busier, more meaningful life, but now is the time to put energy into recovery.
Blessings, Margo
Saturday, October 14, 2006
Musings
I have been musing lately about the changes in my life since I fell three years ago. At the time, I had no clue what had happened to me. Oh, I knew I'd broken my arm, needed arm surgery, and was in pain. I had no idea that surgery would cause severe nerve damage and pain, that my career was over, Rene would move out, I would lose 200 pounds and end up on Social Security Disability. Talk about A Changing Life.
I am still coming to term these changes, though I believe I am learning to accept them. Pain became a prison for a while, and I had to work very hard to find a pain clinic with doctor I could trust. I am still on pain meds, but am feeling much freer these days, and I hope my shoulder surgery will help some. I am learning to live with the peripheral neuropathy in my right arm and hand, caused by the surgery done in '03. This a permanent condition.
I know now that I will return to prison-as a volunteer with an HIV+ group. It is not what I want, or what I was trained to do, but it is something that I can do with the women who need lots of nonjudgmental support.
I still miss Rene, but know the relief of having the house back to a cleaner, sparer, quieter mode. She has a lot of belongings (which I labeled stuff, but it is all important to her), and took over two bedrooms, the downstairs hall, and spilled into the dining and living rooms. It's a small house, and I realized even then that I was suffocating in it. I can breath easier now.
I am still processing the weight loss. I know I look different, but my mind has not caught up with the changes. I still look for armless chairs when I go somewhere, even though I fit in chairs with arms with no problems now. I cannot stand the acres of sagging skin which wrap my body in what I see as major ugliness. I'm odd in that I always liked my big body, and don't like my body now. I need serried plastic surgery. This means fighting with my insurance company (which has already turned me down once), and facing at least three or four more operations, which will need to be done at Yale.
For the time being I am being very forgiving of myself by not looking beyond the shoulder surgery I will have this Thursday, at a local hospital. More inner body work will rise when I have energy to do it. I am well aware of the issue in my life, though, and this alone is real progress.
Being considered disabled by Social Security is just weird, especially since nobody seems to know when and how much money I will get. I can accept the fact that I do fall, hard and relatively often, because of autonomic and peripheral neuropathy. And walking with a cane or rolling walker has become just part of life now, whereas at first I was embarrassed. Using them beats cracking my head on the floor and having to call 911.
And the more life changes, the more it becomes the same-with more changes! I still struggle with depression and a distrust of all things that push me to move before I have digested everything on some inner level. I am always going to be a strong minded introvert!
This means I move slowly with change, but also that I keep moving forward no matter what, sometimes at a snail's pace, occasionally with a beautiful leap, as graceful as any ballerina. I have no idea where this stick-to-itiveness comes from-I didn't have it in my youth-but I am grateful for it now. (thank you for your thoughts on Gratitude, Christa, of This Crazy Life, see my favorites list).
As I muse on all this, I realize that, while I am sorry that I fell, I do not regret the changes that fall has caused. A new and different life is slowly emerging. Not one I would have chosen for myself, perhaps, but one I am learning to live with, even occasionally like. This pleases me.
Now, I must add that life will take a major dive in five days, when I have my shoulder surgery. I will be miserable, lonely, sorry for myself, struggling to use only my left hand, dependent on strangers as well as friends for a while, but now I have no doubt that I will handle whatever the universe throws at me. Perhaps slowly, but certainly surely. And I am glad to know this about myself.
Blessings, Margo
I am still coming to term these changes, though I believe I am learning to accept them. Pain became a prison for a while, and I had to work very hard to find a pain clinic with doctor I could trust. I am still on pain meds, but am feeling much freer these days, and I hope my shoulder surgery will help some. I am learning to live with the peripheral neuropathy in my right arm and hand, caused by the surgery done in '03. This a permanent condition.
I know now that I will return to prison-as a volunteer with an HIV+ group. It is not what I want, or what I was trained to do, but it is something that I can do with the women who need lots of nonjudgmental support.
I still miss Rene, but know the relief of having the house back to a cleaner, sparer, quieter mode. She has a lot of belongings (which I labeled stuff, but it is all important to her), and took over two bedrooms, the downstairs hall, and spilled into the dining and living rooms. It's a small house, and I realized even then that I was suffocating in it. I can breath easier now.
I am still processing the weight loss. I know I look different, but my mind has not caught up with the changes. I still look for armless chairs when I go somewhere, even though I fit in chairs with arms with no problems now. I cannot stand the acres of sagging skin which wrap my body in what I see as major ugliness. I'm odd in that I always liked my big body, and don't like my body now. I need serried plastic surgery. This means fighting with my insurance company (which has already turned me down once), and facing at least three or four more operations, which will need to be done at Yale.
For the time being I am being very forgiving of myself by not looking beyond the shoulder surgery I will have this Thursday, at a local hospital. More inner body work will rise when I have energy to do it. I am well aware of the issue in my life, though, and this alone is real progress.
Being considered disabled by Social Security is just weird, especially since nobody seems to know when and how much money I will get. I can accept the fact that I do fall, hard and relatively often, because of autonomic and peripheral neuropathy. And walking with a cane or rolling walker has become just part of life now, whereas at first I was embarrassed. Using them beats cracking my head on the floor and having to call 911.
And the more life changes, the more it becomes the same-with more changes! I still struggle with depression and a distrust of all things that push me to move before I have digested everything on some inner level. I am always going to be a strong minded introvert!
This means I move slowly with change, but also that I keep moving forward no matter what, sometimes at a snail's pace, occasionally with a beautiful leap, as graceful as any ballerina. I have no idea where this stick-to-itiveness comes from-I didn't have it in my youth-but I am grateful for it now. (thank you for your thoughts on Gratitude, Christa, of This Crazy Life, see my favorites list).
As I muse on all this, I realize that, while I am sorry that I fell, I do not regret the changes that fall has caused. A new and different life is slowly emerging. Not one I would have chosen for myself, perhaps, but one I am learning to live with, even occasionally like. This pleases me.
Now, I must add that life will take a major dive in five days, when I have my shoulder surgery. I will be miserable, lonely, sorry for myself, struggling to use only my left hand, dependent on strangers as well as friends for a while, but now I have no doubt that I will handle whatever the universe throws at me. Perhaps slowly, but certainly surely. And I am glad to know this about myself.
Blessings, Margo
Sunday, October 08, 2006
Letter to the Hospital
This is the letter I finally sent to the local hospital about some of my experiences 3 years ago. I think it has helped me feel clearer about my upcoming stay after shoulder surgery, though I am not looking forward to it. I also gave a copy to my Dr and his PA, so they would know why I am so anxious, even though I know this stay will be shorter and easier.
Do not feel you have to read it, either, I am posting it because people have asked about it. I have removed the hospital's name and the doctors' whole names, because they don't really matter.
Margo
Dear (patient advocate)
Three years ago, on Thursday Aug. 7th, 2003, I fell at work and, because I was hugely obese, went down like a redwood tree. I ended up with a large butterfly fracture of my right upper arm, and terrible bruising from my breast to my thigh on the right side. I was sent to ----- by ambulance. I am writing this letter to review some of the difficulties I encountered during my hospitalization at -----.
I was greeted by Dr. S. and his (then) PA, Mr.T. My arm was X-rayed, put in an ace bandaged type cast, then I was given pain meds and sent home. I was told that their practice's new arm and hand surgeon, Dr K. would do surgery on the arm early the next week.
During my time in the ER, nobody x-rayed any other part of me-like my neck or back-nor was I examined in any other way-an issue which soon became a big problem for me. I went home, took my pain pills and began to decompensate right away. By Sunday, I was unable to get out of my chair, and my partner called 911.
I went back to -----, and was admitted to the over crowded, understaffed orthopedic floor. I was in the second to the last room on the right side in the bed nearest the hall. Since no roommate would open her curtain, and I could not see into the hall, my view for the next 10 days was the TV and a blank bulletin board. After this I was sort of in and out of it for several days.
On Monday morning, my then PCP, Dr. D. dropped by, and was alarmed when I didn't know who he was and that my bloodwork was all out of whack. He ordered an MRI for me, because he was afraid I was having a brain bleed, but he was told that, because I weighed 368 lbs, hospital insurance would not cover the cost of fixing the MRI machine, should I break it. Therefore an MRI was out.
If I had been examined by a doctor or nurse, either in the ER or when I first arrived on the floor, it would have been clear that I was having a "body bleed" for by then I was black from breast to thigh, and getting darker daily. I knew this, and so did the aids who helped me bathe, but I did not know that officials-like my nurses and doctors- did not know, so I never mentioned it. (I was very naive about hospital errors back then. I've learned a lot since then)
All of this I found out later, of course. At the time I was confused and scared. I would wake up two or three time a night, terrified, swimming into consciousness with no idea where I was. After a long while I would gather all my courage and call out, "Where am I?" The first couple of times my roommate would tell me I was in the hospital, but soon tired of my waking her. She would hit her bell and tell the answering nurse, "She's doing it again," and bored, angry sounding voice would erupt over my head, telling me that she had already told me three-or four-times I was in the hospital. I still wake up at night with that feeling of terror at not knowing where I am.
I fared little better during the days. Each time I was to go for a test or X-ray, a team of people would appear at my bedside, some commenting on, or complaining about, how difficult it was to move me, leaving me stammering apologies about my weight. Each move was exquisitely painful, for my arm was still in the original ace bandage wrapping, still unset, and hugely swollen.
One aide actually pushed on my injured arm to get me across the chasm between bed and gurney. When I screamed in pain, she snapped, "Listen, Missy, we have to get you up and moved. Screaming isn't going to stop us." My one small, pitifully proud moment of the whole hospital ordeal happened when I snapped back, "No, you listen, Missy, my arm is unset and unattached and if you push on it I will scream." She had the grace to look slightly abashed, but was no less rough in subsequent moves, though she stayed on my left side from then on.
Nor did I fare much better on the way to and back from testing. I was in an elevator with my eyes closed, trying to contain my pain, when one of the orderlies said to the other, "This woman is too fat to live." The other answered, "Well, she probably won't be living long anyway." I lay there feeling flushed, terrified, and totally humiliated. I kept my eyes closed until they dropped me off at some door for some test.
Then there was the fiasco of blood draws. My right arm was out of commission and I am a hard draw. Knowing this, I was polite to the people who came sometimes twice a day to draw blood. After only a few days, however, I had black and blue stick marks from my left hand up to my shoulder-mostly from misses. The last straw was when I woke up to find someone trying to get blood from my armpit. I called a halt to blood draws, loudly and clearly. A nurse came in and said they would get their best guy to get the required blood that day.
This phlebotomist turned up with another man who was apparently in training. It should have been clear by then that I was not an ideal candidate for someone to practice on. However, the so called "best guy" insisted the second man try three times, before he was willing try. He did get my blood, second try, and left me quietly sobbing with anger, frustration and pain.
Why did the so-called best guy make me be stuck three times before he tried, knowing by the marks and bruises on my arm I was not an easy draw? I'm still wondering. I finally got a port put in, something that should have been done several days earlier.
One evening, after my blood work had improved, but before surgery, an elderly woman was brought in from a nursing home. From my side of the curtain, I heard her grandson telling her over and over that she would be okay now, she was in the hospital, and he would be back to sit with her first thing in the morning. The orderlies put her in the bed beside mine. A nurse told her she had to go down the hall quickly, but would be right back to settler her in. The woman moaned for a long time, while I spoke soothingly to her through the curtain, then she fell silent.
Three hours later, ( I know because I was watching prime time TV), I called for my next pain meds. I told my nurse that nobody had been in to settle my roommate. She looked horrified and pulled the curtain aside. It was too late, the woman was dead. Now, she probably would have died anyway, but her pain could certainly have been eased had a nurse returned, as promised. Within fiften minutes, her body was gone, and the bed was being cleaned. I found this experience to be quite traumatizing, though no nurse that night or the next morning would discuss the incident with me. It was as if we all were to pretend it never happened.
And then there were the smaller problems, not so much medical as practical. I could not take the tops off hot food, or unwrap a sandwich with my left hand alone. The food service person informed me that opening food was not her job. So at each meal I had to ring my bell, inform the nurse I needed help, and then wait, sometimes for 30 to 40 minutes, before someone would show up to help me.
The same was true for the bathroom. I could walk, go by myself, and get back into bed, but I could not get up from the bed without help. Sometimes I waited an hour for help with that, even though I began to become a bother, ringing at 20 minute intervals.
The physical therapist and occupational therapist would arrive one right after the other in the late afternoon, after I was exhausted from getting up to use the bathroom and sit in my chair on and off all day. They kept urging me to exercise the rest of my body to keep myself strong, but never were able to arrive any earlier, or one in the morning and one in the afternoon.
When my bloodwork was finally close to normal, and Dr. K. did the surgery, I was less able to help myself and more dependent on the nursing staff, which was terribly understaffed, due to vacations, and "a bug going round." I turned out to be allergic to morphine, so I had to ring for pain meds and wait so long sometimes that I was in real agony, struggling to breath slowly, with unwanted tears sliding down my face when the nurse finally arrived.
Please know that for the most part, I was well aware of the stress on the nurses, and that there were sicker patients on the floor than I. I am by nature polite, and was careful to thank the nurses and aides for their help, friendly towards most staff members, and quite patient until towards the end of my stay, when I became totally desperate to leave the hospital. Some staff members were actually wonderful to me, smiling and helpful no matter how tired, even to the point of anticipating my needs. I truly appreciated them, and know they are working in the right place. Other staff members-especially nurses-were over-worked, over-tired, curt and spoke down to me, as if being fat also made me stupid.
Finally, on a Friday morning, Dr. K. said I could be released to a rehab place, and the discharge nurse came in to tell me they were holding a bed for me somewhere (I can't remember where now) and they would send an ambulance for me "soon." I understood that to mean that same day. Nobody came for me Friday, but I figured they would show up Saturday morning. By Saturday afternoon, I was desperate to leave, then was told by a nurse that no place sent an ambulance or took in new admissions on weekends.
I had a meltdown, and threatened to leave anyway, but, of course, the hospital held the upper hand, and that was made clear by the nursing staff, who went so far as to call Dr. K. on his weekend off to give me a lecture, even after I had already capitulated and said I would stay.
By Monday, my only thought was to go home. When the discharge nurse came bustling in shortly thereafter, asking why I wasn't going to a rehab place, I told her what had happened. She was shocked, but then had the grace to come back to tell me she had gottenbusy, and hadn't finished the paperwork, and she was sorry.
By then it was too late. I had been it that awful room, in pain and humiliated about my weight for almost two weeks, with nothing to look at but that empty bulletin board, and I wanted out. And so my doctor released me, to go home way too early, forcing me to set up many of the services I needed myself.
All in all, those two weeks were among of the worst experiences of my life. And, as you can tell, I am still angry about my treatment at -----. I still wake up in the night, terrified, not knowing where I am. And I have gone from trusting ----- to take good care of me to massive anxiety at the thought of having to be admitted there again.
Since then, I have chosen to have two other surgeries at Yale, where I was treated as a competent individual, respectfully and with dignity. Despite anxiety which was leaking out my ears, I found both experiences to much better than my time at -----.
I am writing this letter for several reasons. The first is that at the time I received my evaluation, I was still unable to write at all, so I let it go. As time has passed I have become more angry, not less.I have had to spend a lot of time in hospitals, and now I have anxiety attacks before each admittance.
Although I have lost nearly 200 lbs. since 2003, I think I am most angry about the way I was treated for being obese. I heard the snickering and comments about my size; it was, and is, totally unacceptable. I wonder how many other obese people have been subjected to the same kind of humiliating treatment. Perhaps some sort of sensitivity training is in order?
The second reason is that I am hoping that by writing this letter, I will exorcise some of the demons that linger three years later. I have gone into my subsequent hospitalizations with completely negative expectations, to my own detriment. While I have become more assertive and self advocating because of my experience at -----, I have also had to deal with the anxiety causing memories of that experience.
The third reason is that I am scheduled for surgery at L&M on October 19th. Dr. M. will be removing the rod and screws that Dr. K. put in, and cleaning up the rotator cuff. I am truly scared about spending time on that floor again. I hope that my experience will be radically different this time, but I am more anxious than usual before hospitalization.
I believe strongly that the mind/body connection is a critical part of healing, and that my anxiety is detrimental to this. I am hoping that this letter will be a method of changing my anxiety, and of having my experience this time be much better than the last time.
Sincerely,
M. P. S ( I signed my full legal name, not using Margo, because I had switched into my attorney's daughter mode somewhere in the middle of writing it)
Do not feel you have to read it, either, I am posting it because people have asked about it. I have removed the hospital's name and the doctors' whole names, because they don't really matter.
Margo
Dear (patient advocate)
Three years ago, on Thursday Aug. 7th, 2003, I fell at work and, because I was hugely obese, went down like a redwood tree. I ended up with a large butterfly fracture of my right upper arm, and terrible bruising from my breast to my thigh on the right side. I was sent to ----- by ambulance. I am writing this letter to review some of the difficulties I encountered during my hospitalization at -----.
I was greeted by Dr. S. and his (then) PA, Mr.T. My arm was X-rayed, put in an ace bandaged type cast, then I was given pain meds and sent home. I was told that their practice's new arm and hand surgeon, Dr K. would do surgery on the arm early the next week.
During my time in the ER, nobody x-rayed any other part of me-like my neck or back-nor was I examined in any other way-an issue which soon became a big problem for me. I went home, took my pain pills and began to decompensate right away. By Sunday, I was unable to get out of my chair, and my partner called 911.
I went back to -----, and was admitted to the over crowded, understaffed orthopedic floor. I was in the second to the last room on the right side in the bed nearest the hall. Since no roommate would open her curtain, and I could not see into the hall, my view for the next 10 days was the TV and a blank bulletin board. After this I was sort of in and out of it for several days.
On Monday morning, my then PCP, Dr. D. dropped by, and was alarmed when I didn't know who he was and that my bloodwork was all out of whack. He ordered an MRI for me, because he was afraid I was having a brain bleed, but he was told that, because I weighed 368 lbs, hospital insurance would not cover the cost of fixing the MRI machine, should I break it. Therefore an MRI was out.
If I had been examined by a doctor or nurse, either in the ER or when I first arrived on the floor, it would have been clear that I was having a "body bleed" for by then I was black from breast to thigh, and getting darker daily. I knew this, and so did the aids who helped me bathe, but I did not know that officials-like my nurses and doctors- did not know, so I never mentioned it. (I was very naive about hospital errors back then. I've learned a lot since then)
All of this I found out later, of course. At the time I was confused and scared. I would wake up two or three time a night, terrified, swimming into consciousness with no idea where I was. After a long while I would gather all my courage and call out, "Where am I?" The first couple of times my roommate would tell me I was in the hospital, but soon tired of my waking her. She would hit her bell and tell the answering nurse, "She's doing it again," and bored, angry sounding voice would erupt over my head, telling me that she had already told me three-or four-times I was in the hospital. I still wake up at night with that feeling of terror at not knowing where I am.
I fared little better during the days. Each time I was to go for a test or X-ray, a team of people would appear at my bedside, some commenting on, or complaining about, how difficult it was to move me, leaving me stammering apologies about my weight. Each move was exquisitely painful, for my arm was still in the original ace bandage wrapping, still unset, and hugely swollen.
One aide actually pushed on my injured arm to get me across the chasm between bed and gurney. When I screamed in pain, she snapped, "Listen, Missy, we have to get you up and moved. Screaming isn't going to stop us." My one small, pitifully proud moment of the whole hospital ordeal happened when I snapped back, "No, you listen, Missy, my arm is unset and unattached and if you push on it I will scream." She had the grace to look slightly abashed, but was no less rough in subsequent moves, though she stayed on my left side from then on.
Nor did I fare much better on the way to and back from testing. I was in an elevator with my eyes closed, trying to contain my pain, when one of the orderlies said to the other, "This woman is too fat to live." The other answered, "Well, she probably won't be living long anyway." I lay there feeling flushed, terrified, and totally humiliated. I kept my eyes closed until they dropped me off at some door for some test.
Then there was the fiasco of blood draws. My right arm was out of commission and I am a hard draw. Knowing this, I was polite to the people who came sometimes twice a day to draw blood. After only a few days, however, I had black and blue stick marks from my left hand up to my shoulder-mostly from misses. The last straw was when I woke up to find someone trying to get blood from my armpit. I called a halt to blood draws, loudly and clearly. A nurse came in and said they would get their best guy to get the required blood that day.
This phlebotomist turned up with another man who was apparently in training. It should have been clear by then that I was not an ideal candidate for someone to practice on. However, the so called "best guy" insisted the second man try three times, before he was willing try. He did get my blood, second try, and left me quietly sobbing with anger, frustration and pain.
Why did the so-called best guy make me be stuck three times before he tried, knowing by the marks and bruises on my arm I was not an easy draw? I'm still wondering. I finally got a port put in, something that should have been done several days earlier.
One evening, after my blood work had improved, but before surgery, an elderly woman was brought in from a nursing home. From my side of the curtain, I heard her grandson telling her over and over that she would be okay now, she was in the hospital, and he would be back to sit with her first thing in the morning. The orderlies put her in the bed beside mine. A nurse told her she had to go down the hall quickly, but would be right back to settler her in. The woman moaned for a long time, while I spoke soothingly to her through the curtain, then she fell silent.
Three hours later, ( I know because I was watching prime time TV), I called for my next pain meds. I told my nurse that nobody had been in to settle my roommate. She looked horrified and pulled the curtain aside. It was too late, the woman was dead. Now, she probably would have died anyway, but her pain could certainly have been eased had a nurse returned, as promised. Within fiften minutes, her body was gone, and the bed was being cleaned. I found this experience to be quite traumatizing, though no nurse that night or the next morning would discuss the incident with me. It was as if we all were to pretend it never happened.
And then there were the smaller problems, not so much medical as practical. I could not take the tops off hot food, or unwrap a sandwich with my left hand alone. The food service person informed me that opening food was not her job. So at each meal I had to ring my bell, inform the nurse I needed help, and then wait, sometimes for 30 to 40 minutes, before someone would show up to help me.
The same was true for the bathroom. I could walk, go by myself, and get back into bed, but I could not get up from the bed without help. Sometimes I waited an hour for help with that, even though I began to become a bother, ringing at 20 minute intervals.
The physical therapist and occupational therapist would arrive one right after the other in the late afternoon, after I was exhausted from getting up to use the bathroom and sit in my chair on and off all day. They kept urging me to exercise the rest of my body to keep myself strong, but never were able to arrive any earlier, or one in the morning and one in the afternoon.
When my bloodwork was finally close to normal, and Dr. K. did the surgery, I was less able to help myself and more dependent on the nursing staff, which was terribly understaffed, due to vacations, and "a bug going round." I turned out to be allergic to morphine, so I had to ring for pain meds and wait so long sometimes that I was in real agony, struggling to breath slowly, with unwanted tears sliding down my face when the nurse finally arrived.
Please know that for the most part, I was well aware of the stress on the nurses, and that there were sicker patients on the floor than I. I am by nature polite, and was careful to thank the nurses and aides for their help, friendly towards most staff members, and quite patient until towards the end of my stay, when I became totally desperate to leave the hospital. Some staff members were actually wonderful to me, smiling and helpful no matter how tired, even to the point of anticipating my needs. I truly appreciated them, and know they are working in the right place. Other staff members-especially nurses-were over-worked, over-tired, curt and spoke down to me, as if being fat also made me stupid.
Finally, on a Friday morning, Dr. K. said I could be released to a rehab place, and the discharge nurse came in to tell me they were holding a bed for me somewhere (I can't remember where now) and they would send an ambulance for me "soon." I understood that to mean that same day. Nobody came for me Friday, but I figured they would show up Saturday morning. By Saturday afternoon, I was desperate to leave, then was told by a nurse that no place sent an ambulance or took in new admissions on weekends.
I had a meltdown, and threatened to leave anyway, but, of course, the hospital held the upper hand, and that was made clear by the nursing staff, who went so far as to call Dr. K. on his weekend off to give me a lecture, even after I had already capitulated and said I would stay.
By Monday, my only thought was to go home. When the discharge nurse came bustling in shortly thereafter, asking why I wasn't going to a rehab place, I told her what had happened. She was shocked, but then had the grace to come back to tell me she had gottenbusy, and hadn't finished the paperwork, and she was sorry.
By then it was too late. I had been it that awful room, in pain and humiliated about my weight for almost two weeks, with nothing to look at but that empty bulletin board, and I wanted out. And so my doctor released me, to go home way too early, forcing me to set up many of the services I needed myself.
All in all, those two weeks were among of the worst experiences of my life. And, as you can tell, I am still angry about my treatment at -----. I still wake up in the night, terrified, not knowing where I am. And I have gone from trusting ----- to take good care of me to massive anxiety at the thought of having to be admitted there again.
Since then, I have chosen to have two other surgeries at Yale, where I was treated as a competent individual, respectfully and with dignity. Despite anxiety which was leaking out my ears, I found both experiences to much better than my time at -----.
I am writing this letter for several reasons. The first is that at the time I received my evaluation, I was still unable to write at all, so I let it go. As time has passed I have become more angry, not less.I have had to spend a lot of time in hospitals, and now I have anxiety attacks before each admittance.
Although I have lost nearly 200 lbs. since 2003, I think I am most angry about the way I was treated for being obese. I heard the snickering and comments about my size; it was, and is, totally unacceptable. I wonder how many other obese people have been subjected to the same kind of humiliating treatment. Perhaps some sort of sensitivity training is in order?
The second reason is that I am hoping that by writing this letter, I will exorcise some of the demons that linger three years later. I have gone into my subsequent hospitalizations with completely negative expectations, to my own detriment. While I have become more assertive and self advocating because of my experience at -----, I have also had to deal with the anxiety causing memories of that experience.
The third reason is that I am scheduled for surgery at L&M on October 19th. Dr. M. will be removing the rod and screws that Dr. K. put in, and cleaning up the rotator cuff. I am truly scared about spending time on that floor again. I hope that my experience will be radically different this time, but I am more anxious than usual before hospitalization.
I believe strongly that the mind/body connection is a critical part of healing, and that my anxiety is detrimental to this. I am hoping that this letter will be a method of changing my anxiety, and of having my experience this time be much better than the last time.
Sincerely,
M. P. S ( I signed my full legal name, not using Margo, because I had switched into my attorney's daughter mode somewhere in the middle of writing it)
Wednesday, October 04, 2006
Computer is Down
I have not disappeared, my computer is giving me problems. I shall return and try to catch up ASAP. I am using Meg's computer briefly.
Surgery is roaring down the track at me. I went to meet with an anesthesiologist today, who explained about the special nerve block they will be putting in. Friday I see my surgeon's PA, who will explain the surgery more. Then next week I go to pre-admittance testing. My parents arrive on the 11th, leave the 16th, and the surgery is two days later.
When I ge back online, I will publish the finished letter to t hospital, which I mailed off Tuesday.
Blessings, Margo
Surgery is roaring down the track at me. I went to meet with an anesthesiologist today, who explained about the special nerve block they will be putting in. Friday I see my surgeon's PA, who will explain the surgery more. Then next week I go to pre-admittance testing. My parents arrive on the 11th, leave the 16th, and the surgery is two days later.
When I ge back online, I will publish the finished letter to t hospital, which I mailed off Tuesday.
Blessings, Margo
Saturday, September 30, 2006
Every Now and Then
...I Fall Apart.
Last Sunday, I had a small meltdown. I don't cry or scream or reach out when I have this kind of meltdown, I just go to a very dark place in my psyche, and give in to all my fears and self loathing. I roll around in my misery, feeling totally alone, helpless and hopeless and very much the victim of life gone awry.
Of course I am the recipient of a life gone awry, but there is no victimhood there, just stuff that happened that changed my life. I know I am still working to keep abreast of all the changes, but even if I hadn't fallen and ended up in chronic pain and disabled, I would be dealing with some other set of changes-such is life.
I could not see that last Sunday, I only knew I was going into another surgery, scared and alone, afraid of the pain, of the rehab, of living alone post surgery and all the problems that entails, and angry at how unfair life was. I spent most of the day watching TV and wishing I could cry and/or whine to a real person.
Monday morning I got up and went to physical therapy where I did a bit of both to Gail, my physical therapist. By afternoon, I began to figure out why I hit the pits so hard and unexpectedly. I have been working on a letter to the hospital where I spent nearly two dreadful weeks, three years ago, after my fall at work.( I will publish it tomorrow.)
That hospitalization was one of the worst experiences of my life, and come October 19th, I will be back at the same hospital, on the same orthopedic floor, and I am really scared about it. The letter, which I am going to send, is one major step I am taking to erase the fear and move beyond that bad experience. Only after I do, will I be able to accept that this new surgery can possibly be helpful.
During the rest of the week I finished the letter, bought a recliner in which to recover from surgery, and began to think about what else I could do to make my hospital stay less difficult. This will include finding out the name and number of the patient advocate, and speaking to the dietitian before I go in, because of the weird diet I must live on (protein, protein, protein, then fruit and veggies, then water, water, water).
On top of all this, my parents are coming for a visit, pre-surgery. They arrive on Oct 11th and leave the 16th. Surgery is the 18th. My parents have not been in CT in about 5 years, because my mom has been sick on and off. She wants to see the ocean one last time, and I want to hang out with her more than I did this summer. I suspect this will be their last visit to CT.
Although they spend 4 or 5 months in PA, then fly back to CO, where they live the rest of the year, I am not thrilled that they are driving themselves. Dad is 83 and Mom is 81, and both are stubborn as the devil, so I am no longer protesting the trip. They will spend three nights at a motel, and two more at my house. They have not stayed here in over 15 years because Rene (who they loved) filled up most of the house. I'll let you all know how this all works out.
Blessings, Margo
Last Sunday, I had a small meltdown. I don't cry or scream or reach out when I have this kind of meltdown, I just go to a very dark place in my psyche, and give in to all my fears and self loathing. I roll around in my misery, feeling totally alone, helpless and hopeless and very much the victim of life gone awry.
Of course I am the recipient of a life gone awry, but there is no victimhood there, just stuff that happened that changed my life. I know I am still working to keep abreast of all the changes, but even if I hadn't fallen and ended up in chronic pain and disabled, I would be dealing with some other set of changes-such is life.
I could not see that last Sunday, I only knew I was going into another surgery, scared and alone, afraid of the pain, of the rehab, of living alone post surgery and all the problems that entails, and angry at how unfair life was. I spent most of the day watching TV and wishing I could cry and/or whine to a real person.
Monday morning I got up and went to physical therapy where I did a bit of both to Gail, my physical therapist. By afternoon, I began to figure out why I hit the pits so hard and unexpectedly. I have been working on a letter to the hospital where I spent nearly two dreadful weeks, three years ago, after my fall at work.( I will publish it tomorrow.)
That hospitalization was one of the worst experiences of my life, and come October 19th, I will be back at the same hospital, on the same orthopedic floor, and I am really scared about it. The letter, which I am going to send, is one major step I am taking to erase the fear and move beyond that bad experience. Only after I do, will I be able to accept that this new surgery can possibly be helpful.
During the rest of the week I finished the letter, bought a recliner in which to recover from surgery, and began to think about what else I could do to make my hospital stay less difficult. This will include finding out the name and number of the patient advocate, and speaking to the dietitian before I go in, because of the weird diet I must live on (protein, protein, protein, then fruit and veggies, then water, water, water).
On top of all this, my parents are coming for a visit, pre-surgery. They arrive on Oct 11th and leave the 16th. Surgery is the 18th. My parents have not been in CT in about 5 years, because my mom has been sick on and off. She wants to see the ocean one last time, and I want to hang out with her more than I did this summer. I suspect this will be their last visit to CT.
Although they spend 4 or 5 months in PA, then fly back to CO, where they live the rest of the year, I am not thrilled that they are driving themselves. Dad is 83 and Mom is 81, and both are stubborn as the devil, so I am no longer protesting the trip. They will spend three nights at a motel, and two more at my house. They have not stayed here in over 15 years because Rene (who they loved) filled up most of the house. I'll let you all know how this all works out.
Blessings, Margo
Thursday, September 21, 2006
Well, I Guess I'll Survive, Afterall
A few days have gone by, and I have come realize it is not so much the surgery I need to worry about as the pain and recovery. I'll write about the pain issues another time. Whether I go to a Rehab place, or come home quickly, I will have to spend a fair amount of time alone, using only my left hand. My right arm will be in a sling, and hurting.
I have to plan ahead for such things as being unable to open my pill bottles, or grind up my meds or my ice (which I do so they will dissolve quickly because I have such a small stomach now) or open cans or bottles or scramble eggs, or put on a bra, or button my jeans, or change my jewelry ( it may not be expensive, but I love wearing it!) or change the toilet paper roll, or use the cane and rolling walker I need for balance ( when I use my walker left handed, I roll in circles!)
Now this time I am not complaining, or whining and moaning. I am just planning ahead as much as possible, knowing that more issues I haven't thought about will pop up, willynilly. I will ask neighbors to help with many of these issues, although it will be hard to ask. I am way too willing to go things alone. I am already getting suggestion from people, some workable, some not so helpful. I well remember how much hard work Rene put in, and, of course, my mother has one arm(but she lost her left arm!) so I do know what I'm in for. Even my recliner is "right handed" as the handle is on the right and stiff.
Rene's brother Kevin and Jodi (with an i) of Looking Beyond the Cracked Window, have volunteered to drive many miles, so I can see my therapist. And I will request all the help possible from worker comp-like someone to come in daily and help for a while, and rides to and from physical therapy.
I have (at least for the moment) moved from anxiety into planning. I know that anxiety will creep up to grab me again, but now I am seeing that I can muster energy to plan ahead, so I will not feel as helpless as I did three years ago when the rod was put in.
Perhaps Warrior Woman will, once again, come through for me!
Blessings to you all, Margo
I have to plan ahead for such things as being unable to open my pill bottles, or grind up my meds or my ice (which I do so they will dissolve quickly because I have such a small stomach now) or open cans or bottles or scramble eggs, or put on a bra, or button my jeans, or change my jewelry ( it may not be expensive, but I love wearing it!) or change the toilet paper roll, or use the cane and rolling walker I need for balance ( when I use my walker left handed, I roll in circles!)
Now this time I am not complaining, or whining and moaning. I am just planning ahead as much as possible, knowing that more issues I haven't thought about will pop up, willynilly. I will ask neighbors to help with many of these issues, although it will be hard to ask. I am way too willing to go things alone. I am already getting suggestion from people, some workable, some not so helpful. I well remember how much hard work Rene put in, and, of course, my mother has one arm(but she lost her left arm!) so I do know what I'm in for. Even my recliner is "right handed" as the handle is on the right and stiff.
Rene's brother Kevin and Jodi (with an i) of Looking Beyond the Cracked Window, have volunteered to drive many miles, so I can see my therapist. And I will request all the help possible from worker comp-like someone to come in daily and help for a while, and rides to and from physical therapy.
I have (at least for the moment) moved from anxiety into planning. I know that anxiety will creep up to grab me again, but now I am seeing that I can muster energy to plan ahead, so I will not feel as helpless as I did three years ago when the rod was put in.
Perhaps Warrior Woman will, once again, come through for me!
Blessings to you all, Margo
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