Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Empowerment

Who’s On Your Side?

We all need people on our side when things get rough.  We all face adversity and in those moments of despair, challenge, and simple questioning it’s important to know who is on your side.  I’ve seen the best and worst in recent days and I’d like to share both accounts with you.

I work with a woman who is currently one-thousand miles away from home.  Her husband and three children are home and she’s in contact with them throughout the day.  Recently, her daughter was accused of cheating while taking a final.  The teacher believe she saw the young woman looking down at her cell phone during the exam.  As luck would have it, the young woman’s phone was taken the night before by her father, so the cheating on those grounds was an impossibility.

What hurt the most is that the teacher accused the student in front of the class.  My colleague called the school, spoke with the administrators and got to the bottom of the matter.  The administrator agreed that the cheating would be expunged and then asked my colleague what she felt would be appropriate to rectify the situation.  My co-worker said that since her daughter was accused before the class, an apology before the class and the administrator agreed.  How’s that for knowing that someone is on your side.  This young woman knows that “right” is on your side and that there are people (her parents) willing to go to bat to defend her honor and integrity.

On the flip side is another recent turn of events.  Management for a company was challenged by their client about a business practice.  In turn, the upper echelon sent the front line managers and accusatory email with the tone of a reprimand.  I don’t know about you but my leadership training has always taught me that before taking action you get all sides of the story so you have a clear picture of the situation.  In addition, you hired your staff for a reason and if your client is having concerns don’t you have enough respect for your own staff to address them in a respectful and inquiring manner?  I heard the story and imagined myself in that predicament.  I can’t imagine feeling like my own company was against me.

So how does all of that related to the theme of Surviving Strong?  It’s critical that you believe your support team, both medical and personal are always on your side.  I remember reading Jerome Groopman’s book How Doctor’s Think, the story in the introduction of the book tells it all.   He tells the story of a young woman who was diagnosed with an eating disorder and for twelve years she was passed from one doctor to the next searching for the root of the problem.  It wasn’t until the last doctor set her records aside, took out a clean pad of paper, and asked her tell her story from the beginning.  He was on her side.  He knew that if he was going to help her it was imperative that he believe in her and her story.

In order to achieve peace of mind, strength of body, mind, and spirit, and a sense of community knowing who is on your side is important.  It’s a crazy world and knowing with your whole heart that you’re not in this alone can make or break your journey to health and healing.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness

The Anxiety Fugue

Yesterday I talked about taking my black lab, Tashi, to the vet because of her trouble walking. I wrote about needing cue cards because the questions I should have asked escaped my consciousness in the midst of the exam. What caused my lapse in consciousness? What is it that prevented me from following my own protocols that I’ve set in place for my own healthcare when it came to Tashi? Anxiety!

Anxiety can be an overwhelming tidal wave of angst. It causes panic attacks and evokes a stance of fear. I don’t find myself to be an anxious person, but when anxiety does strike it strikes hard. It’s not invited. It’s a party crasher to our lives. I’ll give you an example.

I’ve got asthma. It’s under control with the use of a couple of inhalers. I am under a doctor’s care and have had numerous pulmonary and cardiac tests to insure that I’m getting the right care. I don’t know if you’ve ever had trouble breathing, but the anxiety of not being able to breathe, for me, is worse than not being sufficiently oxygenated. There is an anxiety of doom and potential death.

Prior to taking Tashi to the vet she was having trouble walking. She was agitated and would move around the house quickly and without purpose. Her back was hunched like one of those black cat pictures you see at Halloween. You could look in her eyes and see the angst she was feeling.

Watching Tashi struggle evoked my anxiety. Instead of waiting for the exam I was already struggling with her impending euthanasia. For me, in that moment, there was only one ending to the story and that put me in a tailspin. By the time I got to the vet I had forgotten my own medical exam process. I didn’t have enough clarity of mind to ask the questions I knew in my heart needed to be asked. It wasn’t until I got home that the fog cleared and the questions surfaced.

When anxiety strikes it can be debilitating. This is why when facing a chronic or life-threatening illness it’s important to either record your doctor’s visit or bring a family member or friend as a witness. There are too many of us who miss vital information when the anxiety fugue hits and when it comes to our health and healing we don’t want to miss anything!!

Experiencing Anxiety?  Facing a chronic or life-threatening illness?  Visit http://www.survivingstrong.com

Want to alleviate anxiety through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, living with chronic illness

I Need Cue Cards When Visiting the Vet

The saga of my black lab Tashi continues. At the beginning of last week I noticed that she was having some trouble walking and would drag her behind on the ground. Noticing the symptoms I took her to the vet and had her anal glands expressed. Unfortunately, that didn’t seem to do the trick and over the course of the next twenty-four hours her walking continued to be problematic.

I decided to take her to the vet and see what else may be going on. The vet, a new doctor to the practice, examined her making his observations. After checking for a bowel blockage, he determined that the problems with her legs buckling were neurological in nature. He prescribed a medication that would take about a week to build up in her system. The question I kept asking the doctor is, “Why would something like this have a sudden onset? And “If it wasn’t neurological what else could it be?”

Twenty-four hours goes by and she’s still in a lot of discomfort. I was rubbing her hind legs and thought I noticed a hemorrhoid and then realized it wasn’t her rectum; it was gynecological. Of course, as many of you know who have pets, they only present symptoms or get hurt once the vet closes. It was 8:03 and the vet closes at 8pm.

The next morning I took Tashi to the vet without an appointment. I figured I’ve paid for the building at this point; the least they could do is see her without an appointment. The staff is terrific and took her right in for an exam. She was prescribed a host of medications. Once again I asked the doctor if he still thought the problems with her legs was neurological and he feel that is still an issue.

I need cue cards because I’ve read Dr. Jerome Groopman’s book How Doctors Think and I didn’t follow most of his recommendations. I didn’t ask at the initial consult what else it could be if it wasn’t neurological. I’m better at the human health issues, but when it comes to veterinary medicine I’m at a loss. As you know, our anatomy and physiology is not the same (well maybe if you have a pet chimp/gorilla it may be close).

I’m following the treatment strategy we’ve outlined at the last visit. Her walking is greatly improved and not sure if it’s because we’re treating the gynecological issues or if the steroids have made all the difference. Perhaps it’s a bit of both which only leaves me more confused. I think I’m going to skim Groopman’s book again because I still have my doubts and I want to go in with a clear head. It shouldn’t be a surprise that when we’re with someone or a loved pet who is sick, our emotions take over and all rational thinking goes out the window.

I would love to have a set of cue cards with the questions I need to ask; that would be ideal. Instead, I’ll put some questions together and be prepared for her follow-up visit to determine her progress. She’s feeling better and that’s most important. I do want to make sure going forward that I’m better prepared!

Facing doctor’s appointments and lab work?  Want to be prepared for your doctor’s visits?  Visit http://www.survivingstrong.com

Want to explore health and healing through creative outlets?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in Having a Voice in Healthcare, Living with Illness

Medicine and the Human Factor

I was watching the news yesterday when a report about a Southwest Airlines pilot hit the airwaves.  Evidently, the pilot didn’t know that his mic was stuck in the on position and he went on a tirade about the fact that the flight attendants were either gay, old, or fat, leaving him with limited choices for sexual exploits.  It obviously took those on the radio frequency by surprise, but more importantly it raised some eyebrows amongst the Southwest Airlines crews.  So what does this have to do with being diagnosed with a chronic or life-threatening illness?

It’s been discussed and written about in multiple books about how physicians refer to patients as “the kidney in room 202”, or “the brain tumor in 202”, reducing you, the patient, to the most minimal of descriptions.  Why is this important?  Because the goal is to have the medical team look at you as the total package, not simply your disease.  There is more to you than simply your diagnosis; the diagnosis is a part of you, it doesn’t define you.  When or if we hear providers speak this way it reduces our faith in them as people.  This is why so many medical schools are starting to incorporate Medical Humanities into their curriculums.  The idea that if you bring some humanity into the medical arena the relationships between physician and patient get better, diagnostics are more accurate because future physicians are being trained to listen to the patient’s story; their illness narrative.

If you haven’t read Jerome Groopman’s, “How Doctor’s Think”, please finish this post and rush to the bookstore for a copy of this book.  If you’ve been diagnosed with a chronic or life-threatening illness this book should be surgically attached to your body so you have it handy at all times.  The introduction shows the importance of the illness narrative because it helped diagnose a young woman who had been battling her illness for over 15 years.

Words are powerful so using them to improve the doctor-patient relationship instead of hinder it is crucial on your journey to health and healing.  As your illness narrative unfurls it provides vital information for your care and treatment.  The doctor should be more of a detective then mechanic.

What would you like your medical provider to know about you?  How do you think your story could help in your care and treatment?  What have you been leaving out of your story when you visit the doctor, that could be the linchpin that makes you better or well?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Medical Record Transparency

Ever since the economic collapse last year the word that has been thrown around is transparency.  People want to know what’s really going on and how it will impact them.  Transparency is not exclusive to the financial community, the medical community has increased its discussions about transparency thanks to patient advocacy groups.  Medical records have been the source of tremendous tension between doctors and patients because of the secrecy of the record.  As discussion increases about healthcare reform, the conversation about opening medical records is ever increasing.

Many healthcare providers and hospitals are going to electronic medical records.  This is both environmentally sounds, and more efficient for the providers, but what goes in your medical record?  We know that your vital statistics, lab reports and most importantly your doctor’s evaluation is part of the record…so why is it so secret?  As a patient I like to know what my doctor is thinking.  Jerome Groopman’s book, How Doctor’s Think allows patients to understand the doctor’s process for arriving at diagnoses and treatment plans.  As a patient, if I’m able to understand how my doctor thinks then I believe we could partner better and increase my level of health and healing.

Making it difficult to get hold of your medical record is frustrating.  Providers have used various discouraging tactics to deter people from requesting their records and that’s wrong.  Dome medical providers believe that giving patients access to their own medical records will increase lawsuits, but research shows otherwise.  Personally I know that having access to your medical record is crucial because mistakes happen.  I was visiting my dermatologist and as the medical assistant was reviewing my record I happened to see that my record showed that I had been diagnosed with skin cancer…NOT TRUE.  I asked her about removing this from my record and I was told that it couldn’t be removed, it was a permanent part of the record.  Needless to say when my doctor entered the room I once again brought this incorrect diagnosis to his attention.  He removed it from the record.  If I hadn’t seen my medical record I’d have this false diagnosis and it would follow me around the rest of my life.

Why is this important?  If you’re applying for disability insurance, long-term care insurance, life insurance or another health insurance program this kind of information would raise your rates if the company even extended you a policy (That might change with healthcare reform).  More importantly, having information that is wrong skews the future of your own healthcare.  Doctors who believe the wrong medical record will follow that sequence of thinking when treating you.

Having access to your record will improve the relationship you have with your doctor.  It does two things, puts in a checks and balance system, and makes the doctor become more mindful of what they put in the record.  Knowing what’s in your medical record is crucial to the future of your  health and well-being.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness

Too Many Deaths from Errors

I was reading an article in the Wall Street Journal yesterday about how hospitals are owning up to their errors.  I think this is great because studies show that the big malpractice suits come not because of the malpractice, but because the physician/hospital didn’t acknowledge the wrong nor did they apologize…I guess they’re making progress.

The statistic in the article that was staggering was that “Medical errors kill as many as 98,000 Americans each year, according to the Institute of Medicine, a government advisory group.”  That’s a big number, one that we really need to be conscious of each and every time we go to the doctor, get a new prescription, have a procedure done, or most of all enter the hospital. 

The problem is that we’ve been indoctrinated not to ask questions.  New drug dispensing systems like bar codes that have to match the drug container with the wrist band on the patient are important steps in saving lives, but it isn’t enough.  We need ongoing training to be ramped up.  There are states in the country that don’t require continuing education for healthcare professionals.  The only reason most of them do take continuing education is that is lowers their malpractice insurance. 

It’s critical that patients and caregivers become savvy about the medical profession.  Books such as Jerome Groopman’s, How Doctor’s Think should be the first book that people go buy following a diagnosis.  In fact I believe the newly diagnosed person should drive (after the shock wears off) from the doctors office to their favorite bookstore to buy that book.  We have to begin to understand how doctor’s think so we can ask better questions, challenge them when necessary, and keep them accountable.

Do yourself a favor, become informed, keep a watchful eye for omissions and errors like anything related to sanitation issues, and most of all have a voice.  Be empowered to ask questions because the last thing anyone wants is to be one of the 98,000 Americans who die annually from medical errors.  You have a part to play in this equation.