My metamorphosis into a Kafkaesqe bug
by Anne R. Allen
Yes. I’m back!
A lot of readers have asked why I’ve been missing from the blog for the past five months, so I promised I’d detail my tale of woe when I returned.
It’s kind of a long story.
One that might have been written by Franz Kafka.
It could begin like this:
“When Anne R. Allen woke up one morning from unsettling dreams, she found herself changed in her bed into a monstrous vermin.”
So began my metamorphosis from successful writer to the reviled creature known to the medical profession as a “patient.” After a couple of nasty falls left me unable to use my legs, I spent two and a half months in two hospitals and three nursing homes, mostly getting worse. From mid-July to early September, my health continued to deteriorate as I was shunted from one facility to another, without a diagnosis.
The horrifying news of thousands of deaths from Covid-19 in nursing homes and hospitals didn’t help my physical or mental health.
I felt as helpless as a bug turned over on its back.
My Metamorphosis—The Cockroach Suit
After several unexplained falls at the end of June, which resulted in a lot of back pain, I woke up on that fateful July morning with wimpy, unstable legs. When I used the toilet, I was unable to get up again. I ended up having to call 911. (Not my most dignified moment.)
Because I’d called the paramedics to rescue me from two falls over the previous few weeks, I hit their rule of “three strikes and you’re out.”
Or rather I was in…the hospital.
My life turned into a nightmare as I was drawn into the medical vortex. There seemed to be no way out, despite some heroic attempts to rescue me by my friends and family. (Special thanks to my two Elizabeths!)
Luckily, I don’t remember a good deal of what happened. Hospital brain fog and medications kept me pretty out of it.
But I do remember being forced to wear a huge, hard-shelled cockroach outfit, otherwise known as a clamshell back brace. It was a huge, egg-shaped torture device made of hard plastic that cut into my underarms and breasts and made it impossible to do anything but scream in pain.
One facility refused to let me even sit up in bed without wearing the diabolical brace, so I lost strength in my whole body, not just my legs.
It was as if I’d been changed into a real bug.
A “Difficult” Patient
The cockroach suit was ordered by the doctor who first saw me in the emergency room. He thought my paralysis was caused by a minor fracture in a vertebra in my upper spine. He hadn’t got the memo that science doesn’t recommend immobilizing a patient with an inflexible brace anymore. Especially for a minor fracture. Most of the occupational and physical therapists who visited me said braces like mine hadn’t been used since the 1960s.
Then the doctor immediately declared I needed back surgery.
When I asked for a second opinion before going under the knife, he was furious. But because I know back surgery can be iffy and dangerous, I stuck to my guns. I’m so glad I did, because it turned out the fracture had nothing to do with my paralysis. It was the result of one of my falls, not the cause.
But that meant I got labeled a “difficult patient.”
Lost in Hospital Brain Fog
The hospital also labeled me a diabetic, which I am not. I suppose they figured if you’re overweight, you must be diabetic. So every 4 hours somebody woke me up to prick my fingers and test my blood sugar. They were always amazed at how low it was. Luckily, nobody injected me with insulin, which would have killed me. I found out this week that false diagnosis is still on my chart. Grrrr.
Then, to make things a little more fun, they stopped my prescribed antidepressants.
Meanwhile, they didn’t contact my doctor or access my medical history. The hospital doctor kept saying he was my doctor now. He had no interest in the extensive blood work my doctor had ordered the week before my hospitalization. The report on that lab work would have done a great deal to help with my diagnosis.
So I sank into a fog of depression and pain. After a stint in the first hospital, I was shunted off to one nursing home after another.
In one, a nurse did ill-advised surgery on mysterious blisters on my feet. The wounds from the blister surgery festered, resulting in necrosis, which meant more surgery in yet another hospital.
It wasn’t until I got to hospital #2 that a doctor finally figured out my body was fighting a massive infection. That’s when I finally got intravenous antibiotics and started to improve.
Some Humanity Returns
When I finally escaped from nursing home #3 (against their wishes) my own doctor was shocked. None of the facilities had notified her of anything going on with me except the foot surgery.
She had no idea I was now a paraplegic in a wheelchair, requiring 27/7 care.
She feared I was suffering from a kind of “hospitalitis.” My body had deteriorated so much during the two months of medical incarceration, I couldn’t even sit up without help and my arms and legs were covered with bleeding wounds from the constant blood draws and rough handling.
My doctor’s theory that inflammation from the infection had caused the muscle weakness in my legs was confirmed by a neurologist.
Both doctors affirmed that almost everything that happened to me after I got on the medical treadmill caused me harm.
I don’t mean to say all hospitals and nursing homes treat you this way. I went to one care home where they taught me to get around in a wheelchair and “toilet” on my own. (Yes. That has become a verb, alas.)
But I lost all those abilities when I had to go back into the hospital that insisted on the cockroach suit. I’m only now getting my strength back with the help of physical and occupational therapy.
I Get by With a Little Help from my Friends
During my two months of medical incarceration, I had no access to a computer—and limited access to my own brain because of drugs, lack of sleep, and that hospital brain fog.
Meanwhile, this blog would have died if it weren’t for my fantastic blog partner Ruth Harris and our multi-talented webmaster Barb Drozdowich. Plus all the knowledgeable guests who have filled in for me here.
Ruth fielded all the guest blog requests, which come in daily. 99% come from people who don’t read our guidelines, or choose to ignore them, so they’re self-rejecting, but others are great, so she couldn’t miss any of them.
Ruth also kept up her own monthly posts.
Barb, who is a tech wiz as well as marketing expert, also helped schedule guest posts. She not only wrote a great post herself, but did all the tech required for putting up each blogpost.
I’m grateful to all the guests Ruth and Barb invited to write for us: Sue Coletta, David Brown and Michelle Barker, Dave Chesson, Nate Hoffelder, Will Hahn, Debbie Burke, Mara Purl, Rachel Thompson, Paul Dinas, Becca Puglisi, Khaled Talib, Ev Bishop, and Robyn Rosie.
Slow Recovery
My first “return” post comes in Thanksgiving week because I want to express my gratitude to everybody who has kept this blog alive in my absence. Partners, guests, readers, commenters, retweeters—I’m grateful to you all!
I plan to post at least once a month for now, and hope to be firmly back in the saddle in the New Year.
I’m steadily improving with physical therapy, and I’m thankful for my therapists and caregivers as well. I never would have made it without them. When I finally got home after my ordeal, I was completely bed-bound, unable even to sit up. I needed 24/7 caregivers, so my savings depleted fast.
But now I can transfer to the wheel chair and wheel around the house and even out to the patio.
A lot of gratitude goes to my friend the Wordmonger, aka C. S. Perryess, who built ramps to my front door and patio, so I can go outside and breathe our fresh sea air. I’m sure it helps with my recovery. So do the veggies he brings me from Farmer’s Market every week.
I still don’t know when/if I’ll be able to walk again, but I’m working toward that goal. This week, I stood up with my walker and walked a few feet. It felt like a major triumph.
Don’t Ignore Your Body!
So why should other writers pay attention to my tale of woe? Because this kind of thing can happen to any of us as we age. Especially if you do what I did and work at your computer up to 18 hours a day.
If you’re blogging, keeping up with social media, and writing novels and nonfiction all at once, take lots of short breaks to move around. Pay attention to Ruth Harris’s advice on how to take care of your back. and what Rachel Thompson told us about keeping mentally healthy as we progress in our careers.
Too many hours of sitting without getting up and exercising is a recipe for bad health. I don’t think any of this would have happened if I’d set a timer to get me up every 20 minutes, as doctors and physical therapists recommend.
I would have been more aware of my increasing leg weakness and would have seen my doctor sooner.
So don’t do what I did. It can lead to very bad places. Places where you might have to wear a cockroach suit and feel like a giant vermin.
Good Things to Come
Barb and Ruth and I have lined up some great guests for the next few months.
In December, we’ll have visits from word specialist Kathy Steinemann, and The Critique MD, Christine Carron.
In January, we’ll host the annual “Crystal Ball” post from agent Laurie McLean, founder of Fuse Literary Agency. We’ll also have posts from creativity coach Lisa Tener and intellectual property lawyer, Joseph Perry.
For February, we’ll have a Valentine’s Day post from Irish humorist Tara Sparling and a return visit from the Digital Reader’s Nate Hoffelder.
I plan to be back with lots of advice on craft and marketing. I’m also working on Camilla Randall Mystery #8, Catfishing in America. Getting back to fiction writing is helping my recovery enormously.
Take care of yourselves, everybody–so you don’t turn into cockroaches!
BOOK OF THE WEEK
The first book in the Camilla Randall comedy-mysteries is only 99c!
GHOSTWRITERS IN THE SKY: Camilla Mystery #1
Murder and mayhem (and a bogus agent) at a California writers’ conference.
After her celebrity ex-husband’s ironic joke about her “kinky sex habits” is misquoted in a tabloid, New York etiquette columnist Camilla Randall’s life unravels in bad late night TV jokes.
Nearly broke and down to her last Hermes scarf, she accepts an invitation to a Z-list Writers’ Conference in the wine-and-cowboy town of Santa Ynez, California, where, unfortunately, a cross-dressing dominatrix named Marva plies her trade by impersonating Camilla. When a ghostwriter’s plot to blackmail celebrities with faked evidence leads to murder, Camilla must team up with Marva to stop the killer from striking again.
Available in e-book at:
All Amazons GooglePlay Kobo Scribd Nook
Available in paper at:
Whoa!!!!! That sound like a nightmare of epic proportions!!! So glad to hear you’re on the mend – sending wishes for further speedy recovery.
Loring–I’m improving every week. Just baby steps, but they keep me feeling positive.
Anne, my wife and I are SOOOOO happy you’re back! Wow! It sounds like you ended up in Guantanamo (lol). Seriously, we’re glad you’re with us again and will pay more attention to the time we spend sitting at the computer.
Ken–It did feel a bit like being a prisoner of war. 🙂 Yeah. The older we get, the less time we should spend sitting hunched over a keyboard.
Oh my what a terrible ordeal. Great to hear you’re recovering. Stay the course.
Maureen–I’m getting better every week. A long haul, but I’m determined to walk again.
Wahoo! You’re back.
It’s been inspiring seeing you tackle all this crazy cockroachishness with aplomb. Every week you’ve had some new success to report, & I anticipate those successes & improvements will multiply going forward.
Once again, I say, “Wahoo!” (& I’m not one for willy-nilly use of exclamation marks).
CS–Many thanks for all the help. And the exclamation marks!!!!!.
Holy #^$&* is all I have to say.
And welcome back! 🙂
Re: cockroaches & irrelevant info du jour—Al Pacino going OTT in Scarface calling them cock-a-roaches.
Ruth–I always think of the word being pronounced “cock-a-roach.” I remember a New York landlady who complained about an uncleaned apartment that was full of “cock-a-roaches and pieces of mouse.”
This treatment is absolutely absurd, but I know you aren’t the only person out there to have fallen into such a conundrum. I’m so sorry you got caught up in that.
Advice to everyone: If you don’t have a spouse/partner, have a trusted friend who will agree to be an advocate if you’re in the hospital. Give them a medical power of attorney with instructions to update your primary care physician on all things. When my sweet Daddy was in and out of the hospital in 2015, I went to Texas to live with him for three months. The day after I arrived, I had to call 911. At the hospital in Austin, he began talking nonsense about things best left in dreams. The doctors said he had dementia, which was ridiculous as he’d never exhibited any signs of it prior to this. After a bit of research, I told the doctors I thought he needed to be on a BiPad machine and asked them to check his blood gases. They didn’t want to, insisting it was dementia. I demanded it and got it. They immediately put him on the machine and within hours, his mind was as sharp as the tack he’d always been. I bought my Daddy another 6 months of life and while he was in and out of the hospital, I was there making sure that everything the medical professionals wanted to do seemed logical and justified.
Jeanne–Thank goodness you were able to rescue your dad after that misdiagnosis! (My infection had me talking gibberish at one point, too.)
We missed you, Anne. It is good to have you back.
Please keep recovering.
Ingmar–It’s good to be back. It’s great to have my life returning to “normal.”
Utterly horrendous tale, I was chilled and in disbelief. SO glad you’re back and feeling at least a little better now.
For once I want you to NOT put ANY of this into your next Camilla!
Will–I promise I won’t make Camilla go through any of this!
What a great pre-holiday surprise! Nice to have you back. A reason, among many, to be thankful.
Ken–Many thanks. I am going to enjoy writing for the blog regularly again.
YIPPEEEEE! :O))) How wonderful to hear from you — and that you see light at the end of the tunnel. Your story is so frightening, but your advice is spot on for us all. The medical power of attorney can be a godsend if you’re like me, spouseless and would be dependent upon my brothers.
I’m just so relieved that you are on a real road to recovery. I saw that you were the author of this week’s blog and literally squealed — lots of dog barking followed.
continued blessings to you, Anne…
Maria–Yes, I do see a light at the end of the tunnel. Thank goodness for physical therapy!
Wow, what a nightmare! If only they had contacted your doctor – if anyone had. Anne, so sorry you had to go through that and will be praying you are walking again just fine by next year. You can do it!
Alex–That’s the saddest thing. If the hospital had contacted my GP, I would have been in and out of there in a week and back to a normal life.
Thank you for sharing this true horror story! I have struggled with a myriad of health issues partially worsened on by a misdiagnosis five years ago. Once the right diagnoses starting coming in, I started getting better.
Sadly, it took me until this year, to discover a more misdiagnosis still on my chart. I don’t have diverticulitis or fatty liver, or even a predisposition towards diabetes or high blood pressure. It turns out I had one high blood pressure reading in the emergency room while I was in massive pain. All other readings are normal. I never had evidence of a fatty liver – one doc just made that up after he saw my weight. I have had blood tests that show otherwise, along with some of those great interior scopes – colonoscopies x3. I do struggle with weight. I have a myriad of other health issues, but those misdiagnoses hurt me for a long while.
So, I will.pray for you (think good thoughts, if that’s okay,) and hope you get to stay with the good doctors from here on out.
Tyrean–Unfortunately your story isn’t all that rare. Fatphobia in the medical profession is responsible for thousands of people being misdiagnosed or even killed. And there’s no sign of them getting any better. Fat people are the only humans even “woke” people discriminate against with impunity. When so many of us became overweight because of medication, you’d think they’d at least have compassion. But they’d rather kill us.
And why has not one person in the medical profession ever learned that blood pressure goes up because of stress? And that pain is stress? Don’t get me started…
A warm welcome back to you, Anne! Missed you much and sending you positive thoughts and virtual hugs on your continued recovery…xx
Harley–Thanks! It’s good to be back. 🙂
Yikes!!! I’m so glad things finally started looking up for you – what a horrendous ordeal you’ve been through. Sending you lots of hugs and healing vibes! I wish your own doctor had been consulted earlier – what a mess. Take good care of you! (And cheers for Ruth and the team!)
Jemi–Thanks. It was pretty horrendous. At least I got out. If they’d had their way, I’d still be there. And yes, Ruth and Barb were heroic in keeping the blog alive.
I’m glad you’re finally back home and recovering, Anne, and I hope you never have to see that ‘Doctor’ ever again…
Story–Amen. I’ve mentioned the doctor’s name to a number of nurses and therapists and they all have the same reaction. “Oh, no! That guy is toxic.”
????
I’m so sorry to hear about the horrors you’ve been through, Anne. What a frightening experience. Thank goodness you’re on the mend now. Sending positive thoughts your way.
Wendy–I am definitely on the mend. Every little step is a triumph. That keeps my spirits up. Thanks for the positive thoughts!
Wow! I knew you weren’t well, Anne, but I had no idea you were going through this institutional hell. I’ll have a different outlook on cock-a-roaches from now on. May your recovery improve back to a nice new normal, and it’ll be a slow road to be sure. Here’s some improvement advice from another Anne who I dearly respect – “Just take ‘er bird by bird, buddy”.
Garry–You’re right. 🙂 I have to take it bird by bird!
Welcome back! As much as I enjoyed your wonderful guests, I miss hearing from you!
Dominique–It’s great to be back. And I am grateful to all those helpful guests. 🙂
Holy crap, you’re lucky to be alive! You should sue that doctor.
Kessie–I’ve contemplated suing, but most people advise against it. Unless my disability is permanent, I probably don’t have much of a case.
Oh
My
God
I really have very few words to express the horror this must have been for you. Good Golly! But you are on the mend and you WILL walk again. I can tell that from your post.
We have all missed you and can’t wait to read your future posts. I am so happy you are getting better after this really bad experience. Wow.
Take care and continue to improve!
Patricia–It was pretty awful. Luckily I was in a fog most of the time. There’s lots of stuff I don’t even remember. But you’re right. I’m going to fight until I can walk again.
Not to sound incredibly tactless (a bad trait that I picked up from my mother, who could be called “a medium Karen”), but I do hope that once things get more comfortable for you, a pleasant phone call to a lawyer might be worth looking into. Seems there was a lot of incompetence spread out over those “fine upstanding medical facilities” that you had to deal with, of which the end result is you not being able to stand/walk to any degree of efficiency/competence.
Glad to hear of the tiny incremental steps of progress that you’re making with your health and we’ll continue to cheer you on for further degrees of success.
G. B. You’re right. If I ever have enough energy to sue, I could probably do it. But right now I have to use all my strength to build up my body again. It’s better for me to focus on the positive right now.
Thank goodness you escaped Bizaromedical World and are well on the mend! At home and recovering with help of dedicated professionals.
So glad your horror story has a happy ending in well in progress….rockstar doctor and friends, family, and colleagues ready to help.
And we get another Camilla novel!
Maryjo–“Bizaromedical World” is a perfect description. But yes, I have a happy ending ahead!
I am so sorry this happened to you, Anne! What a nightmare. I am not surprised, however, as this kind of thing happens a lot more than people think. Not necessarily a nursing home hop, but unnecessary tests, misdiagnosis, and trying to keep the patient in the wheel of tests and specialists. My spouse worked at a clinic for 10 years and then a small regional hospital for 20 years, in the medical lab. He was always appalled at the myriad of tests drs ordered, unneccesary tests to CTA (cover their ass) rather than what the patient actually needed.
Then, in 2014, we had a similar experience to yours, but without nursing home. Hubs broke a rib a year earlier, started having shortness of breath, pain in lung, and anemia. He kept telling docs he broke a rib last summer. They kept saying it had no bearing on his present problem as they tested for heart issues, cancer, even ordered a colonoscopy for good measure, even though he’d had one 2 years prior. After much trouble with med professionals looking for everything bit the problem, he finally got referred to a lung specialist in big city. Guess what: his symptoms were CLASSIC for a broken rib. It punctured the plural sac around his lung, and caused a slow internal bleed, hence the anemia that went on for months. The blood pooled in the sac, formed a gel that got hard, blocking his lower lung and causing the pain and shortness of breath long after the broken rib healed. The specialist did surgery, removed this mass around his left lung that was causing the pain, anemia and shortness of breath. His lung was being slowly squeezed up by this growing mass of blood and scar tissue. He didn’t need the XYZ heart tests, and blood tests and hospitalization for observation forced on him by the other doctors, he just needed a lung doctor to investigate his claim of having broken a rib 9 months earlier! Lung Doctor said that this was a very classic and common occurrence in a broken rib injury, and if anyone ever shrugs off “it’s just a broken rib” they are uninformed. But, the doctors we saw in our hometown , in the hospital where hubs worked at the time, kept sending him to the various specialists on their payroll looking for something that wasn’t there, ignoring the patient and his wife who kept saying, “but he broke a rib on his left side last summer” Nah, not relevant, they said. So yes, Anne, everyone reading this, stand up to them. They work for corporations. Our GP left the hospital and clinic system go private, and told us flat out he could not work for that place (huge regional medical Corp with hospitals statewide) because he said they required him to order so many tests all the time like a quota, and if he didn’t do it he would get yelled at by corporate managers. So he left, said he could not do that to his patients.
Sorry for the long post, but if we can help another by speaking out it’s worth it. Be aware that healthcare in America is a Big Business. Small practices and clinics get bought out by these huge conglomerates and their bottom line is money.
I am so sad to hear of the ordeal you went thru, Anne. Many, many hugs, and Hope’s that life is brighter going forward. I’ve missed you. And I absolutely love your Camilla series. Read them all twice, No place like home I’ve listened to 3 times in the past few years. Love and hugs.
Lily–Thanks for sharing this story. Unfortunately, this seems to be happening way too often. It’s good to hear I’m not the only one, but it would be better if we didn’t have stories like this at all. As somebody told me about American medicine: “Greed-based healthcare is not healthy or caring.” Ain’t that the truth. Sigh. I’m glad your husband survived his ordeal.
Oh dear God what an ordeal! I’m wishing a speedy recovery for you and an absolute cracker of ar in 2021! Stay safe love and virtual hugs from NZ
Maureen–Thanks for the good wishes for 2021. Let’s wish that for everybody. We need some positive stuff to happen, soon!
Wow! Thanks for the details, Anne. What a surreal experience. I am so sorry all this happened to you. So glad you are back at work. Thank you, again, for sharing details. Good lessons for us to heed.
Marlene–It was surreal. I felt I was moving in and out of a dream state all the time, and I kept hoping I’d wake up. I finally have, but I sure have a lot of work to do.
How appalling! I am so sorry to hear that happened to you. I hope your recovery continues.
Liz–I have some great physical and occupational therapists, and they’re working miracles, so I have a lot of hope.
Anne, I am so glad you survived such an ordeal with your writing skills and sense of humor intact. Your lesson for writers to keep physically active is a heartfelt one. Thank you for sharing your medical saga as a cautionary tale. You have built a wonderful community with this blog and many thanks to Ruth and Barb, as well as guest posters, for keeping it alive and well during your temporary absence.
Carmen–I’m so grateful that this blog community has survived my ordeal. It’s wonderful to be back.
Anne,
I am so sorry to hear your tale of woe, but happy to learn you are on the mend. Horror stories of medical care gone awry on more common these days, but yours reads like a gothic novel. I wish you a speedy and full recovery.
Thank you also for scaring the crap out of me until I finally stopped working and started moving. Of course, like you, I had read the warnings but until I learned of the effects a sedentary life had on you, I ignored them. No more!
Thank you for sharing, and welcome back!
Madison–My tale is a bit goth, isn’t it? But if my story keeps any writers from being as sedentary as I have been, it will almost have been worth it.
Oh my goodness, Anne, what an ordeal. I’m so sorry that you were put through such unnecessary anguish and pain. Glad to hear you have a good and caring doctor who got to the root of the problem.
I’ve always been very blessed and lucky where my health is concerned but as you say, that can change quickly. Yours is a cautionary tale that we should all pay attention to.
Do take care of yourself and don’t overdo it. We will all be here. Please know that I am praying for you and wish you nothing but a kind and healing recovery.
Annie
Annie–Good to hear from you! Yes. I was always healthy too. Never worried about health stuff. I kept expecting the leg weakness to go away. I am lucky to have a good doctor.
Anne, what a joy to see you back! You have now written a horror novel…except it ain’t fiction. So sorry for all you went through.
A friend once told me, “Remember, fifty percent of doctors graduated at the BOTTOM of their class.” Sounds like you were treated by the bottom one percent.
Wishing you a successful recovery.
Debbie–Thanks! It’s good to be back. Yeah. I keep thinking–I can’t put this in a novel. It’s too unbelievable. I like your reminder about the 50%. 🙂
Anne!! What a horrible nightmare you’ve been trapped in! My mind is well and truly blown reading your horrific experience. I’m so glad you’re back home. And thank heavens for your wonderful friends.
I’ll be including you in my prayers and rooting for you, every baby step you take. Sending you a Big Hug!!
Joy–Trapped is a good word for it. I felt like I was in a cage. But I would not have survived without my wonderful friends and family. Thanks for the prayers.
Horrifying. I’m so sorry you went through this and were treated in such a dehumanizing way. I’m glad you are back! And may God speed your recovery.
Ink–I’m glad to be back to being human. Also to writing on my blog. Thanks!
What a terrible experience, Anne. That doctor at the hospital should be taken to task. Putting you in a brace, when it’s known it’s bad and not contacting your GP for info about you is unforgivable.
I’m delighted to hear you are now on the mend, and it’s great to have you back. I’m sure you’ll get back to walking again. And thanks for the warning about sitting over a computer for too long at a time.
V.M. I have a feeling that doctor had some kind of financial “agreement” with the guy who made the brace. Apparently he puts them on everybody. With pretty much the same results. Do listen to the folks who tell you sitting too long is dangerous. Unfortunately, they’re right.
Dear Anne, I am incensed that you were treated as you were in American hospitals. Frightening and so wrong. I will remember every word of this post. My major take-away: make sure that your regular doctor knows when you have been admitted and gets on the case immediately. Be well, Anne. Blessings on you. I know you will come back whole and strong. You are a fighter, Beth
Elizabeth–Unfortunately we weren’t able to get in touch with my doctor to tell her. She has a phone service instead of a receptionist these days and they wouldn’t take a call from a non patient, even though I’d listed her as my emergency contact and she had power of attorney. And I was too out of it to make a phone call. You’re right that I’ve been fighting this with everything I’ve got. Getting private caregiving has been pricey, but it sure is worth it not to be in a “facility.”
Wow, Anne. I just read this aloud to my husband. We were both left speechless. By the way, I sure hope you have a good lawyer. And I’m so glad you’re back. Holy crap. Also, good advice about moving.
Martha–It is kind of a crazy story, isn’t it? I don’t think it’s worth it to sue anybody. It could be another horrific ordeal. But yeah, it’s great to be back.:-)
Anne, I’m gobsmacked. I had no idea of the torture you were going through. I don’t have anything helpful or useful to add but I am SO glad to see a post from you again. Wishing you every good thing and fortune now after your ordeal. Big (careful) hugs.
Tara–Thanks. Things are getting better all the time. We’re looking forward to your Valentine’s Day post!
Anne this is absolutely horrifying, not to mention reprehensible. I am so thankful you are on the road to recovery. I really appreciate you sharing this cautionary tale. Stay well!
This sounds wretched, and I’m glad you’re out of the hospital. It sounds like you’ll regain your mobility over time if you’re already taking a few step and working hard at the exercises – I’m rooting for you! It can be so hard to advocate for yourself when sick, and for the doctors to fail to tell your doctor anything is irresponsible. I’d suggest filing a complaint with the hospital – it’s not a lawsuit or anything, but a record of the mistakes they made with you could help a later case and protect someone else. Best wishes for a swift recovery. <3
Renee–Maybe a complaint to the hospital would work, but I’m not sure. I think the problem is a rivalry between two medical conglomerates. The hospital was Tenet and my doctor is Dignity Health. They are sworn enemies. It’s very childish. At least I’m out of their clutches.
Wow, Anne. I’m so sorry you had to live through such a nightmare. Your story sounds similar to an inmate who didn’t commit the crime. I’m guilty of not moving around as much as I should, and I’ve also paid the price. Nothing like your ordeal, though. {{{hugs}}} I am SO happy to hear you’re improving. Don’t rush it. Slow and steady wins the race. ????
Sue–I did feel a bit like I’d been incarcerated for a crime I didn’t commit. Those nursing homes can feel like jails. I hope you’ve recovered from your sitting-induced injuries. We all have to move around more than we realize.
My goodness, Anne! I’m glad to have you back and getting better. A perfect week for your return.
Best,
Kathryn
Kathryn–It’s good to be back. And a good week to say “thanks” to all the people who kept this blog alive.
Anne! Yay! So happy to see you back. And . . . holy kamoli! I’m thinking you have the start of a story here. One that is so outrageous some reader will say to you, “that would never happen in real life.” HOLY KAMOLI! It makes me very grateful that I have my sister who is a doctor to help me out with all things medical. I’m going to talk to her about your situation and let her know I expect some swooping in on her part if ever such a thing would happen to me. HOLY KAMOLI! Continuing to send you buckets of healing sparkles. <3
Christine–It helps to have a doctor in the family. 🙂 We look forward to your guest post next month!
Wow and I thought I had had a rough ride! My adventure happened about 10 years ago. In one year I was diagnosed with Myasthenia Gravis (MG), fibromyalgia and epilepsy. Another thing you might want to check is your magnesium (Mg) level. After refusing to take any more seizure meds for the epilepsy my neurologist suggested I take magnesium. I started reading up on it and learned a lot more than I ever knew. I have not had a seizure in 10 years! Interestingly, a low magnesium level is linked to seizure activity. Also, a serum level will not give you a true level which is why people are unaware theirs might be low. You need a cell count to get an accurate reading. The MG muscle weakness improved with taking magnesium and I’m convinced it slowed down the progression of the disease. If your potassium is low, chances are good your magnesium is also. I had been on a potassium supplement for a couple years before learning that little tidbit. I am also an RN and never knew that much about Mg. It is needed by every body system we have. You should look it up to find good food sources as well as which type of magnesium supplement will work best for you.The amount needed varies from person to person. Within two months of starting magnesium my fibro pain and sleep apnea quit. My balance was better and I was less fatigued. I’ll keep you in my prayers.
Quirky–I discovered magnesium a couple of years ago. It’s magic for getting rid of leg cramps and spasms. I take potassium, too. My doctor put me on it a while ago. It’s amazing how important minerals are to your wellbeing.
Hugs and prayers, Ruth. Hospital visits can be traumatic, even more so when they ignore your own doctor. Take care and heal fast.
tracikenworth—Thank you for your kind words, but this horrifying experience was endured not by me, but by my blog partner, @annerallen. We are all so happy and relieved to have her back with us!
Traci–Thanks! As you can see, it was me in the hospital and Ruth who heroically kept the blog going. 🙂
Sending virtual hugs. Glad you are home and healing.
Leslie–Hi there. I miss you! I hope there will be a time soon when it’s safe to resume the whole writing group.
Omg Anne. I’ve been checking up on you, especially for that period you weren’t around anywhere online. 2020 nightmare almost over. Be well, and we’re here. 🙂 x
Debby–I think the bad juju is on its way out. 🙂 I walked a whole 8 feet today! Back in August, I was able to post a few things to Facebook using my phone, and I think you saw some of my first posts. I knew people were worried about me, but I didn’t have the ability to tell people.
That’s amazing Anne! On step at a time, one day at a time will all add up! I remember when you posted briefly then faded out. I checked up on you with Ruth and Kathy. How utterly awful my friend, but everyday is anew for you now. Breathe. 🙂
Thank you for sharing! Keep well and take good care of yourself. May your craft give you the strength you need right now. Writing heals (take it from a cancer survivor:-).
Katarina–You’re so right! When I was finally able to sit up at the computer and start writing again, my whole body started healing faster.
Sorry to hear you fell into the grasp of the many incompetents. Yes, you’ll be walking again because you have discipline, humour, and determination. Glad that you’re back. All the best to you.
Jill–Thanks! I am determined. Walking a few more steps every day!
Oh, Anne! What a truly awful iatrogenic experience 🙁 I’m so sorry you went through all that. But so very glad you’re back and feeling better. Wishing you very good health from now on. <3
Elle–I had to look up iatrogenic and it’s such a great word! It describes exactly what I went through. That’s the word my GP used to describe what happened to me.
Your ability to write and spin a tale has never left.
swugar–Thanks a bunch. Storytelling can help us all in so many ways.
So glad you are on the road to recovery. I’m sorry it was a terrible ordeal at the hospital. My late husband was chronically ill with lung problems the 30+ years we were together, in and out of hospitals, and always somewhat sick. I learned that health is relative and we have to celebrate when we maintain where we are and our small improvements. Hope you continue to get better.
Natalie–That’s an attitude I’m working on: be happy for small improvements. Or even just maintanance. So sorry your husband had such a hard time.
Oh Anne, this is terrible, what a ghastly, horrible experience! I’m so happy to hear you’re back home and recovering with the help of your wonderful friends. Heavens, medics like the one you got who put you in the cockroach braces should be shot or at least thrown in a prison cell!
I’m looking forward to your next Camilla book – maybe you should throw in that hospital experience? It’s a Gothic horror but knowing you, I bet you could turn it into something fun…and take revenge on that awful doc and his obsession with turning his patients into cockroaches!
Cheers and enjoy a home-cooked Thanksgiving dinner, you deserve it…and don’t worry about overweight – fatphobia is another medical obsession that deserves getting trashed in one of your books!
Cheers and hugs from your friend from the other side of the (Atlantic) pond who’d wondered what had happened to you – it’s great to have you back!
Claude–Many thanks. I hope to have the new Camilla out for summer 2021. I’ve got the first draft almost complete. No hospital horror stories in this one, but I may deal with this stuff in another book. You’re so right about fatphobia. It kills a lot of people. I once went to a doctor for an infected bug bite on my leg and she did nothing but try to bully me into weight loss surgery.
Wow, weight-loss surgery to cure a bug bite? That sounds like something else you want to put in one of your books! And I’m looking forward to your new Camilla this summer, that’s excellent news!
Claude–Many thanks for the encouragement. It is wonderful to be back to working on a Camilla book. It’s so fun to be in her world.
It’s terrible when the people you turn to for help injure you further. I’m so sorry you had to slug your way through the dark to find a little light. I hope you’re dancing on the table tops again soon.
Thanks for the blog.
GB–I like that goal: dancing on table tops. Well, at least dancing. I hope I’ll be dancing by next summer. That’s one of my ambitions.
Anne,
I’m SO sorry you went through all that! *hugs* As you know, I’ve had my own medical struggles, which just this summer/fall included unexplained inflammation that exacerbated all the nerve damage issues in my feet and affected my ability to walk. So as I was reading your story, I was cringing so hard at everything they did wrong. Ugh.
A few years ago, the medical industry wanted to put me on a never-ending cycle of antibiotics for my C. Diff–never mind that it had been *caused* by antibiotics. Thank goodness I learned to advocate for myself (and wasn’t stuck in a hospitalized situation). With a bit of research and experimentation, I was able to “cure” myself within 5 days (after 2 months of misery) with just coconut oil. Who knew? Not the doctors, that’s for sure. *sigh*
As you said, the medical industry *can* be great. But it also can be very anti-patient and individual situations, seeing only charts or whatnot.
All the *hugs* to you–I’m glad to see you back, and I’ll second the notion to get a trusted friend to be your medical advocate, but let’s hope nothing like that happens again! 🙂
Jami–Thanks so much for stopping by. I know you’ve been through the medical wringer too. I had c.diff from antibiotics last year. For me what worked was a little kefir at each meal. I never thought to try coconut oil. Great to know it works.
Coconut oil quieted everything down for me, and then kefir kept it stable. So hopefully you won’t ever have more problems with c.diff, but if you do, now you know a plan B. 😉
I’m sorry to hear you’ve been through all that. I can relate in being a ‘difficult patient’. I have some chronic issues that are currently being hard to pinpoint and diagnosis. I started PT this month and that alone has helped immensely, but I’m still not sure if I’ve found the root cause. And dealing with doctors and trying to get them to dig can be a pain in the neck. Most just want to throw drugs at me and call it good, where I want to find the cause and fix that.
Patty–If your symptoms don’t match one of the popular diseases, most doctors don’t seem to have a clue what to do with you. I hope you can find the causetoon. But PT sure helps. I was so grateful to the doctor who said “you don’t need a neurologist or a rheumatologist. You need a physical therapist.” 🙂 And he was right. I’m getting better all the time. I hope you continue to improve with physical therapy.
I’m so glad you’re back, Anne, and I wish you a speedy return to full health! Thank God you listened to your own common sense.
xoxoxo
Kathy–Many thanks. I’m looking forward to your guest post for us next month. You can just send it to me. I’m taking over formatting and publishing blogposts as of this week.
Will do. Stay safe!
Searingly poignant, yet also funny, as only you could write it, Anne! I am so glad you have turned the corner. We’ve missed you so much.
Melodie–I’ve missed the blog and my online friends (and writing) a whole lot too. I’m glad to be back!
Hi Anne, I’ve never commented before, but have been following your blog over the years. Keeping you in my prayers for a speedy, safe recovery. Happy Thanksgiving–Am thankful to hear that you are improving and that your doctor was able to intervene. Cheers/Kindest Regards.
Claudia–Thanks for “de-lurking”. I’m getting better all the time. Thanks for the prayers and encouragement!
So glad to hear you are better. Stay strong and stay safe.
Missi–Thanks much!
Yikes! When doctors get it wrong, they can do so much wrong. 🙁 I’m relieved that you’ve managed to get a PROPER diagnosis and that you’re finally on the mend, despite their best efforts.
I have a friend who relearned has to walk twice, after medical malfeasance — in her teens and in her thirties. She actually found painting her toenails as good PT — and a way to add brightness back into her life.
My deepest sympathies for your seriously epic trials and tribulations. Rest up and heal smoothly!
Morgan–I hadn’t thought of painting my toenails to get those leg stretches working, but that might be a good plan!
So glad you’re back, Anne. Like you, I love to write and would happily sit at my desk doing exactly that for at least 18 hours a day. After reading your horror story, I’m so glad that life gets in the way. I’m learning to say, “No, I can’t do that” too. Sometimes that’s a very painful sentence to say or write, but an important one to learn. Looking forward to all the treats you mentioned and more from you. Best wishes for returned strength…
Leanne–It’s good to be back. But yeah. Get up and move around. Don’t end up like me.
Holy cow, Anne! I’m so sorry to read all this, and more to the point, that you had to go through all that! I guess like any other profession, there are good and bad practitioners. 🙁 So glad to hear you’re on the mend now. Here’s hoping 2021 sees you back to full health again. ????
D.D.–Many thanks!
What a terrifying story Anne.
I’m frequently reminded of how lucky we are in Australia, where a basic level of good medical treatment is available to all. And that people in countries like the USA aren’t so fortunate, because the idea of “everyone being looked after” has somehow been filed under ‘political’, rather than ‘health’.
Glad things are looking better for you Anne, and thank for the great blog.
If content is king, you are our queen.
Gabe–What a day-brightener! Many thanks.
I agree that US medicine is a mess. Greed-based health care is neither healthy nor caring. 🙁
Oh my goodness, Anne! I am so sorry for what you went through and very glad you are home and starting to recover! I am glad you have good support, both in the real world and online. If you need anything, please let me know. ❤️
So glad you have escaped the Medi-World Carnival (where the patient is ALWAYS incompetent to make their own decisions, 2nd opinions are treated as insurrection, and few ever follow the very good advice to, when all is deteriorating, back the hell off, reduce all meds, and start from scratch).
One piece of advice? I had a broken ankle, and was having major trouble regaining mobility. I saw an infomercial for a gadget called the Cubii (cubii.com). I swear this was a terrific way to both get some exercise, without risking falling, and in a way that didn’t stress a bad knee. It got me mobile in a matter of a few weeks.
Ask your doctor if you could try it. I still use it, and it saved my mobility.
And, yeah, I understand the connection the medical/nursing fields make between overweight and diabetes – no matter how little evidence, they just believe that you will FINALLY show a result to the tests.
No.
Linda–I’m glad you hear the pedaling helped your broken ankle. My doctor swears by pedaling devices like Cubii. if I ever get to the point where I can move my legs again, and he gives me the okay, I will definitely pull out my Cubii-style pedaling device.