Monday, August 15, 2011

The Naked Patient

This article is first in a series that will address patients, caregivers and the medical community.

From my point of view, the most important aspect of medicine is the patient, so this series of articles will address our loved ones first.  If you have been a patient for a long time, you are familiar with most of what will be stated here, but if you have just entered the twilight zone of medical nightmares, you are in uncharted waters and there is a code of silence meant to keep you suffering in silence in perpetuity.  No, it is not all in your head, it is real and it must end.

This article is long and you should read it because there are no shortcuts to understanding what it is like to be a patient for the rest of your life, even if you think that your situation is temporary (a common misconception perpetuated by the medical profession and EVERYONE around you.  Hope and denial go hand-in-hand with lack of information about medical conditions)

Patients - The Naked Truth

It is high-time you become empowered and understand the reality of your illnesses and the status of the medical community.  First of all, understand that very few medical professionals are on your side.  You are nothing more than a dollar sign that pays for their medical malpractice insurance, their golf games at the country club and a better quality of life you will ever have.  You also pay for their staggering medical school student loans and make up for those gazillions of hours they spent sleep-deprived through their internships.

You need to know:
  • Your medical condition's name and all the research done about it.  
  • What works for most and what does not for others.
  • Go to forums for people who suffer from your condition. Use the websites that ask for donations and research to get better educated, but for YOUR condition, read what others have undergone and what they are still going through.  This will help you avoid falling into the same patterns of neglect and medical abuse.
  • Know your symptoms.
  • Be aware of your pain levels.
  • Know your medications - Names, used for, prescribed by, frequency of use, how they affect you - what you find intolerable - how effective are they.
  • State clearly who can speak on your behalf and who else they should communicate with on your behalf.  It is important that your loved one(s) can interact for you when you are unable to do so and that they can ask questions that you may not have thought of asking. - Put it in writing and make DAMN sure it is in your chart and your husband or wife has a copy in his/her wallet.
Take a printed sheet of paper with all the items stated above and made sure the doctor has a copy and another copy goes into your medical file.  Keep one in your wallet at all times and add or minus any prescriptions ordered for you and by whom. 

Have you been in a work accident? Is the pain in your back killing you? Do you live with CHRONIC PAIN? 

DEMAND

You must demand they do FLEX X-Rays for your back.  A regular x-ray will not show if there are hairline fractures in the bones that make up your spinal column.  They ALWAYS save the FLEX X-rays for the very end of your insurance coverage.  You know why, right?

Let me tell  you something YOU need to know - If you have broken bones or torn muscles, there is no amount of physical therapy, acupuncture, massage therapy, aqua therapy, icing or cooling or voodoo magic that will r-e-p-a-i-r anything that is broken.  

The only solution is a GREAT surgeon with loads of experience and success rate and physical therapy after the surgery that could last for months to get you as functional as you can possibly be under the circumstances.

You need to know this because these people will have you jump through hoops to milk your insurance company and your savings account.  If you are new to this game, you may have some reservations and be incredulous because after policemen and firemen, we have been taught to have a great deal of respect for anyone in the medical field.  It is assumed that they are the experts and know what is best for you.


No, they don't know better.  They know money, they know the pharmaceutical representatives and the perks they get for prescribing stuff you may not need or is three times more expensive than a prescription that will work better for you.  

What perks? One of our doctors got an-all-expenses paid trip for him and his family to the Bahamas for "attending" a one-day seminar.  Yeah! they don't get a t-shirt or coffee mug,  They get big ticket items, and in many cases, a healthy reimbursement the patient knows nothing about.
  • Your medical insurance pays for all those shenanigans and the vast majority of surgical specialists own a piece of the action in physical therapy clinics.  It is their bread and butter before, during and after surgery.  You are the meal ticket baby! 
  • Your out-of-pocket expenses will mount quickly no matter how good your insurance coverage - private or Medicare - claims to be.
  • You will be enduring pain you don't have to endure - Think about it; you are suffering from pain from something that is broken and now you will endure additional pain from exercising and aggravating the site of injury by putting additional strain on broken bones.  The massage therapist will be putting additional strain on your body by pressing on parts that should not be touched.  Your acupuncturist will be wasting your time and money. - All these people will get paid by your insurance and the deductible comes out of your pocket.  In the meantime, the real problem has not been addressed once, and you continue to be in excruciating pain while they tell you: IT IS ALL IN YOUR HEAD.
  • Your pain management doctor will administer anything and everything to "take the edge off" from the pain.  He/she will inject you, prescribe and manage the amount of drugs entering your system to alleviate your pain.  However, your mind, your brain, your cognitive ability and other internal organs will be affected.  Some of those medications will be used on a prolonged basis and they are known to be destructive to the heart and the liver or the kidneys.  - Do you need this? NO, you don't.  What you need is for the problem to be addressed correctly and all these intermediary steps skipped completely.
  • YOU will not be the same person you used to be.  How your pain and condition treats you will affect your immediate family and change the roles everyone was used to performing.
  • IT IS NOT YOUR FAULT - you did not cause this (whatever your condition is) and you don't mean to make anyone's lives difficult, but it will be a challenge because things have changed.
  • DEPRESSION will happen if you live with constant pain.  BE AWARE, let people know how you feel and treat this SYMPTOM of your condition accordingly.  Do not let it fester and ruined your life and that of those around you.  Sometime, medications cause lethargy and depression.  Be AWARE of this as well.
  • COMMUNICATE clearly with your support system (your wife, husband, children or partner) and LISTEN to them as well.  They know how medications affect you in ways you don't see or notice.  Your judgment may be impaired for a while and it is okay to allow someone else to do what is best in the best way they can handle it (it may not be YOUR way)
CHRONIC PAIN

Chronic pain sucks and it sucks big time.  NO ONE understands what it is like to be in pain 24/7 and still attempt to function like you did before your body was attacked by a permanently disabling condition.  You do.  Only you know to which extent you are able to handle the pain and how far you can go on in your daily activities.  Proper pain management will only be achieved if you are clear on your medical condition, its causes and your level of tolerance and acceptance.

PAIN LEVELS

Level of pain 9 to 10 = The pain is unbearable and you are suicidal.  YES, it is THAT severe and people have killed themselves in order to stop the pain.  IF YOU ARE HERE, GET MEDICAL HELP IMMEDIATELY.
Level of pain 7 to 8  = You are too close to 9 and you can barely move.  Going to the kitchen for a glass of water is an ordeal and you rather go thirsty. It hurts to breathe. IF YOU ARE HERE, GET MEDICAL HELP IMMEDIATELY.
Level of pain 5 to 6 = If you DON'T move too much, too quickly or attempt to do more than what is absolutely necessary, you can do self-care on your own, but it takes you all day to motivate yourself.
Level of pain 3 to 4 = You are more functional but you hurt a lot.  You have become used to overcompensating with other body parts to make up for the one(s) that hurt.  You lean on one side of your body more, you walk less, you use implements to assist you in getting through the day. 
Level of pain 1 to 2 = The pain is more of an annoyance than anything else. You are able to function more normally than most people in the higher range, but you know that something is NOT right with you.  You can control the pain with medication and even some physical therapy that targets and strengths your muscles. 

SPEAK UP!!! 

You have to get out of the mind set that doctors are mind readers.  They also don't spend enough time with you to get to know you and take the totality of your life and lifestyle into consideration.

The medical profession has become a lousy health care delivery system that resembles a factory assembly line no matter how elegantly appointed their offices are.  If you have the feeling they could careless what happens to you after you have left their office, go with your gut feeling.  They really don't care.  You are just one of the many bills they submit for payment and if your insurance does not reimburses them at a high rate, they'll drop you like a hot potato.
  • Speak up and don't let anyone minimize your situation.  If you feel pain, don't tell them you are sore.  Tell them the truth and repeat it often until they get it through their heads.
  • Show up with all your questions printed on a sheet of paper and do not allow them to rush you out because "your time is up" - Write their answers under the questions and make sure you repeat their answers back to them with any concerns generated from their answers.  If they are vague, ask them to clarify their answers.  If you get the feeling they don't know what they are talking about or could careless about your concerns, it is time to get a SECOND opinion.  By the way, THIRD opinions are even better.
  • Ask them to repeat what you just said to them and address the issue(s) you want to have taken care of and to describe the protocol to get you back to work, on your feet, back to what you consider normal or the new "normal" 
If there is a new "normal", you want to know what that means to you and how it is going to affect your daily life.  You want to know all the facts ahead of time and talk to people who have been through the same thing you are going through.
  • Do NOT let anyone tell you that "it should not hurt" "I know someone who is doing just fine after having the same thing happen to them" "You'll be playing golf in no time" "It is all in your head" or a variation of platitudes that are designed to make you doubt yourself and keep your mouth shut by suffering in silence. 
YOU don't have to suffer in silence.  As a matter of fact, you should be as vocal as possible and shout it from the rooftops because that is the only way you will get the QUALITY OF CARE you need and deserve.  Millions of people are suffering in silence because they have become accustomed to this dysfunctional health care system that is not designed or geared towards the benefit of the patients.

If you need to express your concerns and no one is listening, ask to speak with a patient advocate.  If that does not work, take your written concerns to the hospital administrator or mail it directly to your doctor.  If that does not work, take all your documentation to a malpractice attorney because at this point, you have done all you could to get your issues resolved.  I am sorry, but sometimes, this is the only way they hear you - It is, after all, a FOR PROFIT BUSINESS - and money talks.


There is something repugnant about the way patients are treated in this country and how miserable their personal lives become after a surgery or chronic condition.  

Americans are forced to go back to work when they should be on permanent disability with a team of medical professionals ensuring their quality of life is the best they can have.  After all, QUALITY OF CARE = QUALITY OF LIFE whether we like it or not.  

Americans are forced to endure pain they don't have to endure and worst of all, if they are married, their spouses are automatically expected to shoulder the burden only medical professionals should handle.


Next article: Spousal Caregivers: The Naked Spouse  Related Article: The Naked Doctor




Image: digitalart / FreeDigitalPhotos.net

6 comments:

BlueTrooth said...

Ironic that I just had a flare-up that started an hour ago. I'm a very sympathetic person, maybe I felt your hub's pain as you focused on this piece? Just kidding, of course. You offer good advice. Particularly the part about physicians being mind readers or even remembering your condition from one visit to the next. I finally became an empowered patient after three years of expecting my Doctor to remember, magically, every detail of my condition. No, I do not fault my Doctor, she is without a doubt an ANGEL. I love her like a Sister, but only after some real frustration.
Right now, I'm leaning very far to my left to relieve an exceptional amount of pain in my right shoulder blade area. This is nothing new, but it is infrequent. Usually once or twice a month I experience a level 9 emanating from some area of my body which pisses me off to no end. It's frustrating that I have no control and the "attack" has no precursor to warn me. It wasn't until I started a diary that my Doctor got an accurate perspective. Even if you are "soldiering through" your pain, write a daily diary about where it is, what it feels like (ie compression or penetration) and why you "think" it might have been triggered. If or when it impacts your ability to be social or meet your obligations as an employee, employer, family member or Parent be sure to document it. This gives your physician some idea of severity without providing the moans and groans. Remember, your physician deals with a variety of patients that range from very low and very high pain thresholds from one to the next. By writing it down, you provide a significant indicator of the severity. It can also provide YOU with clues regarding the triggers.

And with that, I'll say kudos to Olivia for bringing this issue up. And I dare say that Universal Healthcare won't change the necessity for YOU, as a patient, to take steps to ensure proper care. Although I will say the new electronic files have helped my Doctor to remember our discussions from one visit to the next. Thanks to Pres Obama and the ACA ;)

cheeriogrrrl said...

This article is EXCELLENT, and a must read for ANY patient and/or their spouse/caregiver. Many patients don't yet understand that they need to be in charge of their own care, so you've provided a valuable service for health care consumers. As always education is key!

skbeal said...

Excellent advice. The healthcare system in this country is a disgrace. We live in an age where politics and money take precedence over the needs of people. Insurance companies, doctors and the pharmaceutical companies are doing everything they can to rob patients of the essential basic care they need. It seems to me that the Hippocratic Oath has gotten lost in all of this. Wise patients should learn all they can about the procedures that are recommended for them. The same goes for dental care.

Amanda aka LibrlOkie77 said...

Olivia,

This has hit home for me and my Spouse. No one truly knows what chronic pain is until you live with it. I never thought that at my age I would be in chronic pain and as I get older it will only get worse. How do you explain to a 4 1/2 year old that Mommy's pain is not going to get better and that you cannot play with him right now. I I happen to have a Pain Doctor that will do everything he can to get me off as much pain medication as possible. I just had a procedure to burn my nerves last week, 2 out of the 4 nerves are better. The other 2 are causing me extreme pain and my sciatica has started acting up again. I hopeful that this week they will calm down and I will be in less pain. I will never be pain free but the thought of less pain gives me some hope.

My Spouse is very supportive and has stayed with me through the ups and downs. No other Family member truly understands but him. One asked me if there was a time limit on disability. I am like you are a freaking idiot. SSDI is not always permanent, but it most cases people are disabled for life. Many have asked my Husband why he stays with me, because in their eyes I am a complete failure. He tells them "He loves me and I am not dead".

Amanda

Olivia Emisar said...

Amanda,

I get it. If you have the time read the other post: The naked spouse and let your hubby read it. He is not alone and neither are you. We are all the "invisible" population.

The extended family is rarely of any help and contribute to the aggravation because there are hurt feelings as well as nerve damage and chronic pain. We all want everyone to "get it", but they either choose to be ignorant or are too stuborn and want everything to be the way it was. Denial can be very powerful.

As far as the kids, I too get that. We have spend our entire time together making things as "normal" for them as possible. They turned out to be great empathetic children.

Hang in there, you are both doing great.

PEACE

sandinbrick said...

It's a good post, especially familiarize yourself with the med your Doctor gives you. When I had a herniated disc in my neck, I went to 6 Doctors, before finally getting to the bottom of it. They told me it's all in my head, gave me meds off label. Something you might want to write about. One shot did the trick. After all that. I know my Doctors do get perks from Big Pharma, but I do not take anything until I look it up and do the same for my campanion. He thinks Doctors are God. What can you expect. There was a time when they made house calls. I don't trust any of them. Thanks Olivia, this was most helpful to me. I have everything in order, since that Schiavo case. My sister will make decisions for me, in case I'm not able.