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

Monday, October 23, 2006

doing okay, 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 visitingt 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 hear? 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 frm 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

Saturday, October 14, 2006


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

Sunday, October 8, 2006

Lettter to 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.
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.
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 4, 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