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.

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)

 

 

 

 

 

 

 

 

 

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

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! I'll let you all know how this all works out!

 

Blessings, Margo

 

 

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

OMG-Surgery, Whine, Whine, Piss, Piss

Human beings-and I here I mean me-are funny creatures. I spent the whole summer waiting for my shoulder surgery to be scheduled, complaining that I need it done, the time couldn't pass quickly enough, all I wanted was a date.

 

Well, I have a date, October 19th, and now it feels as if that date is a train barreling down a track straight at me, and there will never be enough time to prepare. Food, toilet paper, paper towels, arrangements to make, the need to open cans and jars and cook with my left hand.

 

And the pain. I remember how much pain there was after the doc I grew to hate put the rod in. And how he belittled the pain. Later, after the Yale Pain Clinic had diagnosed me with chronic pain, I asked the surgeon if he had ever had a broken bone, or had any period of pain in his life, and he admitted he hadn't. That was my last visit with him and soon he left the practice.

 

This time, a doctor I know and trust will remove the screws and the rod (if possible) which have been impinging on my rotator cuff, and then clean out the rotator cuff, for good measure. Oh, joy, I cannot wait to see if the surgery riles up my neuropathy, which runs down my forearm and into my hand. Neuropathy pain sucks.

 

Yes, my anxiety is rising, and the whole thing is bringing up hospital flashbacks, and acute loneliness, for I will come home to an empty house.( Except for Roxy, of course).  Meg will be working 60 to 70 hours a week at our local nuclear power plant, mandated during the planned shut down (for refueling and double checking every piece of equipment).  This will go on through November, and she will have enough on her plate with the new baby and her 12 hour work days.

 

My friend Peggy is working full time, and I will need to have outside help come in, to help with bathing, dishes, etc. And a nurse to come in to check for infection. And the final blow is that I won't be able to drive for six weeks, so I'll have to miss my weekly therapist's appointments, at the time I need to see her he most.

 

Well, this has turned into a finely miserable entry. It feels as if all I do is spew anxiety and then whine about it! I know that patients who go in with a positive outlook do better in surgery and healing, so I had better get my rear in gear and start to fake positivity a little better, so I can make it through!

 

Hope you all are hanging in. I certainly will.

 

Blessings, Margo

Moving into Fall

It is amazing to discover that summer is over. I spent a lot of it waiting for an appointment with my ortopedic surgeon, which finally happened at the end of August. While I was waiting I went to a family reunion, of sorts, in the Poconos, where my parents. have a cabin. I was able to spend time with my nephew Luke, his mother, my sister Catherine, her gentleman friend Bob, my brother Luke, his wife Mary, Meg, Myla (who is now three months old!) and Adam, and then, later, my nephews Eric and Brian (Luke and Mary's sons) , and Eric's girlfriend Amanda.

 

I didn't get to spend enough time with my parents, however, as they have a seperate, small, winterized cabin, where they stay to escape from the chaos in the lower cabin. I have mixed feelings about these get togethers. Some of us suffer from depression, some from bi-polar, others from near(or full blown) alcholism, and some are completely oblivious to all of this! It makes for an interesting mix, and a certain amount of tiptoeing around each other.

 

Of course , everyone else can escape into the woods, or down the stream, or out on the lake. I am pretty much stuck in the cabin area, because I walk with a  cane or rolling walker. Dirt roads, woodland paths, and lots of rain made it difficult  get around. But I read a lot (murder mysteries) and napped and visited with whoever happened to be around. And I am glad I went for the visit, despite our collective craziness.

 

Now I must move on to the next hurdle. My shoulder surgery is scheduled for October 19th. I've been waiting for this surgery for the last two years, but now I am dreading it. I went through this 3 years ago, and know quite well what I am in for-an unfortunate feeling of deja vu.

 

Tonight I am purposely not looking too far ahead, but as time passes, I need to reach into myself to activate Warrior Woman yet again. Maybe I'll look more at it more next week!

 

Blessings, Margo

 

 

 

And Unto Me a Grandchild was Given

Yes, I am still alive and doing okay and living in SE CT. And yes, I am a grandmother! Meg had her baby by C-section on June 15th, and I feel so blessed that I got to be in the room, holding her hand while the baby was delivered. A girl! Meg had kept her secret up til the end. I watched the baby emerge from the incision, and, after they weighed and suctioned and wrapped her up, I was the first one to hold her, to bring her over to Meg to see. Meg named her Myla.

I am overjoyed. I spent the first 10 days "sleeping" on Meg's couch, helping when I could, and going home during the day to sleep. I am grateful that she live a half a mile up the road, so I can go over most days to hild Myla, and that Meg doesn't mind my dropping in.(I always call first, though.)

Meg"s boyfriend, Adam, seems to be taking on the role of daddy, although she was already pregnant by artificial insemination when she met him. He lives and works in RI, and comes down on weekends. I give then privacy on weekends, but cannot wait for Mondays, so I can go over and hold Myla  and sing nursery rymes to her. I have also tauight her to stick out her tongue, as my mother taught Meg ast the same age.

Babies are amazing, and the fact that Meg(at 34) is old enough to have one is still amazing to me. I love that I was there at the moment she crossed the line from maiden to mother, archtypally speaking, and felt myself becoming even more of the Crone, even though my menses stopped long ago. This is not bad, for the Crone carries the archetype of wisdom, and I hope to grow into the role more as I age as gracefully as possible.

As for everything else, well, Rene is still shutting me out, and I now understand that I was making big changes, and as she struggles with change, I may have beeen something of a threat to her. I still love and miss her, but have pretty much accepted that she's gottta do what she's gotta do, and am moving on with my life.

The summer has been filled with physical therapy, and chiropractry, and my regular round of doctor's appointments,with some massage therapy and accupuncture thrown in, because I think alternative therapies do help.
I saw my surgeon, Dr. Bell,for my one year after gastric bypass appointment. I have lost over 180 pounds since my heaviest in April '05, and am a shadow of my former self!
My annual bloodwirk came out alright, and I have an appointmrent with a plastic surgeon, though I probably have to have the shoulder surgery before I can excize the incerdable rolls of skin and left over fat that weigh me down now.

I am sorry, yet again, it has taken me so long to post. I seem to go through periods of inertia when it comes to the computer. After a few days away, I am overwhelmed by all the e-mails, and cannot find the energy to catch up. Plus the dining room, where my computer is, is not airconditioned, and I am definitely not a summer person. Some days I feel trapped in the living room, where I run an old air conditioner practically full time.

Thank you for you concern and e-mails to me, asking how I am. They make me realize how much my friends out here in computerland mean to me, and I an grateful to all of you.

Blessings, Granny  Margo :)