zebras are blowing up in lieu of treatment due to today’s medical community. Women are sorely the largest community of Zebras.
zebras are blowing up in lieu of treatment due to today’s medical community. Women are sorely the largest community of Zebras.
Not kidding, some days are this bad…..
A self-report questionnaire developed by sleep researchers to determine sleep fulfillment
Chronic Diseases are famous for fatigue! Fatigue is not a strong enough word to describe the exhausted weakness that over takes the body. Keeping our eyes open let alone concentrating on anything is impossible. Even our most loved activities can not do it. When the chronically ill body says sleep. sleep it is..
Insufficient sleep is now one of the most significant lifestyle factors influencing whether you will develop Alzheimer’s disease. During sleep, a remarkable sewage system in the brain, called the lymphatic system, kicks into high gear. As you enter deep sleep, this sanitation system cleanses the brain of a sticky, toxic protein linked to Alzheimer’s, known as beta amyloid. Without sufficient sleep, you fail to get that power cleanse. With each passing night of insufficient sleep that Alzheimer’s disease risk escalates, like compounding interest on a loan.
Parenthetically, and unscientifically, I have always found it curious that Margaret Thatcher and Ronald Reagan – two leaders who were very vocal, if not proud, about sleeping only four to five hours a night – both went on to develop the ruthless disease of Alzheimer’s. The current US president, Donald Trump – also a vociferous proclaimer of sleeping just a few hours each night – may want to take note.
Insurance companies know the damage sleep deprivation can cause, not only on our bodies but the economy.
All individuals on the healthcare team must take this problem seriously, since Medical Errors are the third leading cause of death in the country. All providers must know the patient safety threat is great when the team is likely functioning on very subpar levels due to sleep deprivation. Try sleeping in a hospital.? It is a cliche often said hospitals are not for sleeping…….Well maybe they should be!
Perhaps you have also noticed a desire to eat more when you’re tired? This is no coincidence. Too little sleep swells concentrations of a hormone that makes you feel hungry while suppressing a companion hormone that otherwise signals food satisfaction. Despite being full, you will still want to eat more. It’s a recipe linked to weight gain in sleep-deficient adults and children alike.
Worse, should you try to diet but don’t get enough sleep while doing so, it is futile, since up to 70% of the weight you lose will come from lean body mass, not fat. Turn these facts around and you realize that plentiful sleep is powerful tool for controlling your appetite, your weight and keeping your body trim. Sleep the pounds off no one said ever, but I am willing to try.
Sleep is perhaps the greatest treatment we have. How many times have we heard of comatose patients, zzzzzing off for months, even years, then wake up. New and improved.
Actually fatigue and not just the everyday midafternoon crash is common. A good strong cup of coffee or tea is where my mind wanders too during those times. However the fatigue that comes with chronic diseases is so very much more profound that descriptions can’t depict it accurately. No caffeine actually helps. Your body wants to crash, so lay down, if even for just 20 min and be sure your doctor hears about it. Many serious illnesses have extreme fatigue as an early symptom. A blood sample may reveal the cause. IE: Anemia? Encephalitis? Sjogrens, MS, Heart Disease and even some Cancers.
A chemical imbalance is easy to treat with supplements and can have you up and at ’em in no time. A chronic health condition is a different matter altogether. Have you heard of spoonies? We are a large group of people throughout the world that gauge our energy levels, fatigue actually by the number of spoons spent in a days time. We all start out with the same number. Every activity from waking, dressing, stressing, shopping, working, spends spoons. By late morning many times I am already out of spoons. Other Chronic disease sufferers may be able to get through dinner with their number of spoons. When our spoons are depleting a significant nap is in order to regain enough spoons to say hi to the family and go back to bed. Did you know sleeping burns up spoons? Imagine that. …
Remember sleep is a good thing, use it.
The Moon Tells the Sky, The Sky tells the Sea,
The Sea tells the Tide,
And the Tide Tells Me.
Sleep tight friends…..!
Today’s health care we understand has problems. Right? Well almost every system involved in the world has problems. Mainly since man is involved in their creation or management. Let’s take finance for instance. Our money is pretty darn important to us. If we are among those with enough of it to worry about, there are consultants to help ease our anxiety. However, Health care is a life or death system, and it is screwed up. Today especially.
First of all there is not just one facet of health care that we can go to for all our care. That works well. Our system needs healing to be its focus. Our primary focus ! A system patient centric that’s purpose is to Mitigate pain and reverses the crawl of disease or eliminates it altogether when possible. We need to rid our failing system of the intrinsic forces at work impeding it.Insurers practicing medicine far from the patients bedside for money making purposes does not enhance our system. It interferes with it. It is actually deadly and a deterrent that must be regulated away.
Decades ago we would ask around if we needed to locate a good doctor and someone almost always had a recommendation. Family Doctor, or Pediatrician, we would find one we liked and we had a tendency to stay with them. For a lifetime in many cases, or until we moved away or something like that. Today these brief encounters with strangers on our corners located in bright new buildings may be great for the revenue stream but does not add a twat for the patient. It defers empathy which is desperately needed to discuss treatments, the time to go over the difficult diagnosis, or to just get a correct one.
Doctors would be able to call in a specialist if needed, and when all was improving then we would be back to basics again. Our doctors knew our OB’s, our Pediatricians, Orthopedics involved with the entire family. Or at the least hadthe file right there. They knew our personalities, family genetics and habits. Good and bad. Their partners knew us as well in case they had to fill in. This worked out very well in many ways, especially with diagnosing. If our Doctor knew Dad had heart issues since he was 40, when Junior started running out of breath at 30 doing menial yard work Doc knew right where to start looking. Or Susie had a car accident ten years ago, and she banged her head. She was knocked out for a few minutes. Now ten years later, and suffering headaches, Doc knew where to look first. By the way Mom had a long history of migraines, and anemia issues. It could have been a long round about search but her Doctor was familiar in her details of life. It takes time to develop that kind of trust and familial intimacy. 15 minutes on a TV screen or in an office won’t cut it. Patients and their medical care team are to be partners. Patients must be looked at as individuals not as numbers or a quota on a graph. Patients made to feel inadequate won’t open up or participate. They must feel safe in being honest and in sharing their thoughts and questions. No one is more of a specialist for a patient than the patient. Working together as in the past will help to eradicate many of today’s medical conundrums.
But Not today. We now have a doctor for 15 minutes. The suggested protocol today requires we start with a Primary Care Practitioner. They are actually today most likely to be General Practitioners, Internists, Family doctors etc. However, they act more like facilitators.Or we are allowed a visit with a PA. A physicians assistant. Almost as knowledgeable as a doctor working over her or a student does not infuse confidence. A patient who lacks trust in their care giver has little chance of healing. Which is counter-productive if you ask me. There is becoming a serious shortage of Primary Care doctors. We get our 15 minutes, often in a day that the system that pays our PCP requires them to at least see 100 patients. Or more per day. My husbands last pulmonologist told me it was not unusual for him to see 250 patients some days! I can’t remember details about 10, even trained could you honestly say you could be familiar enough to treat or diagnose hundreds in a day? Error free? That begs incredulity. Our PCPs operate mostly as a landing spot for all the other specialists we now must see, for 15 minutes, and to send their reports to. It is actually dangerous today to go to a doctor or hospital. I am not being facetious, it’s true. The fox is guarding the hen house, well disguised.
Do you remember that game we used to play at parties, where one person would whisper a story to another person next to them? Then that person did the same thing to the next person next to them, repeating the same story. And on and on until the story comes back to the first person who whispered it out. Only now he doesn’t recognize it as the story he first told. It’s now changed, a lot! Well that is how our health system functions. Imagine if you had to go to the hospital? A new doctor, or a hospitalist, another specialty, and another doctor and string of nurses totally unfamiliar with you, having to depend completely on what someone put in a computer. Remember when we were first learning about computers and mistakes happened all the time. We were told garage in and garbage out.
Here’s how it is most likely to work. We call in talk to the nurse, tell her/him our story. She makes us an appointment, takes notes between calls and starts a file on us and whomever else called. At the appointed time, We go in see the doctor for our 15 minutes. Half of that quarter hour he is reading the nurses notes, asks us a few questions, checks the boxes on the computer, watches the clock and has to decide what our problem is. Symptoms are Fatigue, palpitations, out of breath, sore mouth, itchy ears, joint pain, burning eyes and always thirsty. Our patient tells him its like having the flu every day.Mr. P tells the doctor he is very achy. These symptoms have been getting worse and he guesses he has had them for several weeks. The Doctor stands when times up, he’s ordered blood work to be drawn, and Mr. P. should come to see him again in 3 weeks. At 100 per day minimum, times 5 days a week, times 3 weeks. About 1500 or more office visits with various patients later.
Blood work results were loaded into the Electronic Health Record, by a nurse or lab or Hmm? ESR is a little high, not bad though CRP also, everything else looks good. Doctor decides it is probably a flu, or sinus infection. He will give an antibiotic, let’s see if we can get you better. Then the DR Says, ” he notices you can’t take penicillin?” You answer,” why not?” He states,” the record says you’re allergic to it”. ” AHH, not that I am aware of,” you tell him. And it begins. The errors. Fortunately Mr. P. was awake and responsive, alert and could correct the error.
Are you aware that more people die from medical error each year than only two other causes altogether? Over 250,000 people die and more are maimed, every year! Let that sink in a second. More than all types of accidents or shootings together. More than from Cancer, heart disease, car accidents etc every year!
So back now to our patient and his PCP. Doctor gave him a script for 750 mg of Cipro for 5 days. “Glad we caught the penicillin error,” Patient thinks, “Whewwww that could have been bad”. The patient leaves the office a little uneasy. He starts the script as directed because he wants to feel better. Within 72 hours he has developed horrible pain new in his left ankle and right elbow. Plus he continues to have all the symptoms he started with that sent him to a doctor to begin with.
He calls the doctors’ office frustrated and ill at ease. His new situation is relayed to the nurse, and she says she will let the doctor know. As he waits anxiously for a call back from the doctor his wife calls him to check in, she’s thoughtful that way. She had been researching her husbands symptoms and believes hubby may have Sjogrens Syndrome or another autoimmune issue. She tells him to look it up at the Mayo Clinic or Cleveland Clinic sites. PubMed or Johns Hopkins too. Good trustworthy informative sites loaded with information. It truly is a new day. If more patients used it more lives may be protected. Meanwhile the doctors’ office called back, and he was told to ice the joints that hurt and take a 500mg tylenol for the pain. Also, to come back to see him next week. An appointment is made and he goes to his computer. As long as he’s looking things up he decides to check out the side effects of Cipro, he is really hurting since he started taking it.
Now he is shocked! He immediately decides to stop taking the Cipro. He read that this is a broadspectrum antibiotic, made to kill anthrax! A Fluoroquinolone antibiotic which are very controversial. The FDA has labeled them to watch out for attacks on your tendons and ligaments plus these can literally change the mita chondria in your DNA.Aortic aneurysms are also possible. Another concern. Decides he will not finish the script.
The Sjogrens Syndrome research ticks off all the right boxes. It is an autoimmune disease that attacks moisture producing glands, the exocrine glands and others. The glands that are involved with creating moisture? We are mostly water in our bodies, so this could be difficult. The info suggests either a Rheumatologist or a Neurologist is preferred for treating Sjogrens. There is no cure but serious damage can occur if left untreated. Now he has a conundrum.
He wonders. Why didn’t the Doctor just give me the Penicillin? Didn’t he believe me when I said I wasn’t allergic to it? Why wasn’t Sjogrens considered as a diagnosis? Is it because I am a man and more women usually get it? Why wasn’t I informed of the Achilles tendon and ligament damage potential from the Cipro? Even after I called and informed them of my new pain? Questions galore and he felt worse. His body ached but no fever. Wouldn’t the flu cause a fever? Trust has left the room.
If no infection the Cipro can cause havoc in the body. It attacks soft tissue if it can’t find an infection to gobble.It is listed as a secondary medication, definitely not a first line medication. No warning from the doctor, why didn’t I read that pamphlet the pharmacist put in the bag with the pills? I will from now on and I will ask the doctor point-blank what the side effects are whenever I get a new medication. No I should always ask! Old or new.
Sometimes the article on the Fluoroquinolones said that the side effects may not show up for months or years. How would anyone ever put two and two together to know that a medication you took maybe 6months ago caused the problem? No I am going to ask about every prescription from here on. They are expensive medications, definitely more than the penicillin or any others I have had? Wondering why.
Next week he kept the appointment, being hardly able to walk or use his arms. Now both ankles, and elbows were inflamed and hurt worse than his original complaint had . He spent ten of the 15 minutes allotted for his appointment bombarding the doctor with questions. This week he had his wife accompany him to ask questions that he might forget to ask. He asked several times to be referred to a Rheumatologist because he was concerned he might have Sjogrens Syndrome. The doctor related that he didn’t believe the Cipro had caused any extra pain or harm since he gives it out often, and he never heard from a patient about anything like this. His drug Rep has told him these are excellent and safe. He prescribes it often as it will find any and all kinds of infections. That helps insure us there are less return visits from patients.( He didn’t mention that many insurance companies and medicaid and medicare won’t pay for return visits anymore). It is supposed to be an incentive for the medical practices to do a better job getting it right the first time. Except the good intentions back fired. Now the doctors are using nuclear weapons to kill off mosquitoes. Follow the money. Our doctor works for a large corporate hospital affiliation, he is an employee.
All those new rules, insisted on by insurers are causing real conundrums.
To top it off the doctor was not aware of the current black box warning on the medication. The most dangerous warning a pharmaceutical can get. The patient was refreshing the mind of the doctor, but the primary companies protocol called for him to use it. So the doctor not being aware ignored the warning.
The doctor ordered more blood work looking for autoimmune markers. He would make the referral based on the outcome of the blood test. Our patient asked for the referral now anyway since the blood work doesn’t always show the markers every time. The doctor agreed, and He was told the nurse would put in a referral and call him when it was set up. It took 3 weeks to get the call, and another two weeks to get into see the doctor. Meanwhile the blood work confirmed the Sjogrens titre was elevated. Becoming an astute patient he began drinking water, a lot of water which every article his research taught him said that was an imperative now and always. If indeed this is Sjogrens Syndrome, the Rheumatologist would need to decide if it was primary or secondary before initiating any treatment plan. His hope now was that this particular Rheumatologist was familiar with the disease. Researchers warned in the literature that even though it is not as rare a disease as once thought many doctors and medical schools are way behind the curve on it. Rare difficult to treat disease syndromes are not money makers, unless progressed significantly. Patient P has decided being his families advocate seems to be the prudent thing to do.
Patient P. asked for a copy of all of his blood work to take with him to his appointment in two more weeks. His wife was going along and would take notes. He also asked the nurse from the doctor if the error about the penicillin had been removed from his file. No, It was still there. He instructed her to remove it asap! She said she would. But needed to discuss it with the doctor first. One can only hope.
About me it asks? Yikes…… Well here goes…..I am a passionate and spirited mature woman of faith. Faith in God, My Lord and Savior always comes first in my life. Also, I am a mom, of four. I was a wife 3 times, 2 times widowed. That was rough! Rougher in every way more than I ever thought it would be.! I had no understanding of what the loss of a spouse entails. I was caretaker to each of them until they passed from their medical error catastrophes.. So after the last one passed I decided enough. Not that a companion wouldn’t be nice since always being a fifth wheel is not. But I am done with the idea of any long term relationship . I could not experience that kind of loss again.
I believe God has a purpose for this single oneness He has me in today. So, I will wait as He slowly reveals His plan for me to come. That is just fine with me. I know those plans are going to be interesting and challenging at the very least. I also know good will come from it.
I am also a braggadocious Grand mom, Stepmom, Aunt, Sister, Cousin, and Friend of many. A woman who has much to say about a great deal. An Opinionated INTJ personality. I was born this way so what I can do is try to use the golden rule as often as I can. You don’t know about INTJ’s? That’s easily remedied, google it. There aren’t many of us which I heard from some is a good thing. Ha, it’s all about perception. We are frustrating to be around I am told. Mainly because we are right. About almost anything and unrelenting. Just ask us. It is by MBTI standards the personality called the Mastermind. So by popular demand, (actually a few friends and family suggested that I write down a few of my experiences, notions, opinions. Certainly not so I wouldn’t drive them all crazy with my thoughts and comments)? Right?
‘Oh For crying out loud’ was born. Born once in 2015 and then, Born again. More Recently. Now it is ‘Oh For Crying Out Loud & it’s Echoes’. I know it’s a long name, but I have trouble with being short. We all have our faults, I am A work in progress.
As the Good Lord has seen to bless my life with many diverse and rare maladies along with a humongous family, really large and in its fullness of unique and rare nutty complex diagnoses. It seemed fitting to share the oft time mountainous climb many of us experienced through our trips and travails of medical errors and not. We learn by sharing, not only things but experiences, knowledge and in doing we help others. We give up privacy and risk ridicule and humiliation, but how else would you know what helps, works, or doesn’t
Well enough about all that……for now. Blessings and hugs to you and I pray you are helped by my little blog, insights, theories, stories and thoughts. Which more will follow soon. The Lord willing.
Until later……SS . View more posts