Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, Emotional Health, Empowerment, Healthcare, living with chronic illness, Living with Illness, newly diagnosed illness

Truth Be Told

We teach children to tell the truth.  We take an oath to tell the truth when we get on the witness stand.  When we watch Superman, we hear “Truth, Justice, and the American Way”.  We’re caught up in the premise of truth and yet when we go to the doctor, we often hold back telling the truth.

Let me be clear, omission of facts (data) is not living your truth.  Minimization dilutes truth!  Trying to be or act the way our provider expects us to be/do diminishes our truth.

This is what I’ve learned after being a patient advocate for over twenty years.  If you don’t tell the truth, the raw, nitty gritty details, your healthcare provider is working with insufficient data.  If you don’t give your provider all the information, it’s like leaving ingredients out of a recipe…what a disaster.

Truth is a two-way street. If you aren’t honest with yourself, how can you be honest with your provider?  If you’re having a flare, don’t just believe it’s a passing thing and doesn’t need attention.  If you’re in pain, don’t dumb down the number on the 1-10 scale so the provider thinks you’re brave and can handle the pain with minimal intervention.  The opioid crisis is predicated on a lack of truth, making providers hesitant to prescribe narcotics for pain.

Truth is a funny thing because many believe it works on a sliding scale.  I want you to ponder the idea of truth on a sliding scale when it comes to your health and well-being.  I’ll give you an example.

One of the times I went to therapy, I was seeing a Jungian analyst.  He was a highly competent psychologist and I liked him a lot.  I trusted him.  After eighteen months of seeing him I walked into my session and initiated termination because I felt “healed”.  He was persistent in asking me if I truly believed what I was saying.  I’m stubborn!  I left therapy, telling myself I was healed.  Nine months later I was driving and pulled into a gas station to use a pay phone (I’m dating myself) and called him.  He answered, the first words out of my mouth were, “I need an appointment, I’m crazy” (not in the clinical sense, in my personal experience of how my life was going.)

I learned a lot about truth telling from that experience.  I learned that telling the truth didn’t diminish my worthiness or my life in my therapist’s opinion.  By telling my truth, I healed more quickly.  Best outcome was I felt lighter walking in my own shoes.

I encourage the patients I advocate for to be honest with their providers.  There’s a caveat here, sometimes patients feel they are telling the truth because they don’t remember/recall the complaints they’ve had between appointments.  It’s interesting that we believe an episode or experience isn’t important to tell the provider.  Every aspect of your health experience is important to the provider.

What’s the first truth you’ll tell?

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Doctor's Visits, Empowerment, Healthcare, living with chronic illness, Living with Illness, newly diagnosed illness

Still on the Journey…With Renewed Passion

I’ve been working in the healthcare field for over thirty years.  I’m a mental health provider, focused on the impact illness has on our physical, emotional, and spiritual lives.  When I started this blog, my intention was to share my insights and experiences as both a provider and a patient.  If you’ve read any of my blog posts or gone to my website (www.gregkatz.com), you know I’ve had an autoimmune disease most of my life.  In addition, I’ve nursed many animals with varying degrees of illness and written about their journey.

Over the past eighteen months, I’ve been enrolled and graduated with a graduate certificate in Health Humanities and Ethics.  It has opened my eyes to many unanswered questions for both patients and providers about their experiences in healthcare.  My classmates came from all healthcare arenas.  Our discussions punctuated the challenges of working in healthcare because of finances, policy, research, insurance, access, and a host of other dilemmas.  It has expanded my understanding of healthcare and made me a more informed and sensitive provider.

As I relaunch this blog, I wanted to share the direction I’m headed.  This year I’ll write about my experiences personal and professional.  I’ll explore how we can address doctor/patient relationships for optimal health.  I’ll share reviews of books related to both patient experiences and those of healthcare providers (educationally and in practice).  One of the key areas I’ll address this year is the concept of “legacy”. What are we leaving behind?  How will we be remembered?  What are we doing to improve our own situations and those of others?

I’m excited to explore these topics.  I’ll be sharing interviews with individuals showcasing personal experiences of illness as well as the handcuffs felt by many providers as they try and reconcile the realities of medicine with their intention for entering the field.

I hope you’ll join me on this journey and participate in the conversation.  Your voice is important because it’s about what we have in common, not what divides us (sound familiar).  I want all voices to be heard around the table because this is how we can advocate for what’s needed, what’s right, and what heals!

If you’d like to share your story (patient or provider), please email me at greg@gregkatz.com!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, Healthcare, Living with Illness, overcoming adversity, Spirituality and Health, Storytelling

How Does It Feel to Be You Right Now?

We live in tumultuous times and it’s scary waking up every day with so much uncertainty in the world.  The truth is, even when things are in alignment politically, socially, and atmospherically, the person we are is always in the uncertainty zone.  How is that possible?

We’re complex beings physically, mentally, and spiritually.  If you look around your community, watch the news, or truly listen to the stories told by your friends and family you come to understand the depth of our complexity.  Unfortunately, along with complexity comes fragility, that sliver of vulnerability that exposes our human Achilles heel.

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My father called me a couple of days ago and opened our conversation with, “You know I’m at an age where a lot of people I know are dying.”  If nothing makes you vulnerable (at least in your own mind) mortality usually creates an emotional and spiritual gash in our armor.  It makes everything frighteningly real.  It exposes our imperfections while simultaneously accentuating our strengths.

We greet one another with the age-old question, “How are you?”  What are we really asking?  If you ask the question, are you prepared for the truth? I like the question “How does it feel to be you right now?”  It’s a question of connection.  It gives the person you’re connecting to the ability to be in the moment.  It gives each of us the opportunity to understand what it’s like to live in the body, mind, and soul of another human being.

I was involved in an ethics discussion about the interaction between doctors and their patients.  We were exploring the idea of empathy. When we have these discussions, the debate is often about sympathy and empathy.  Noted anthropologist, and one of my mentors, Angeles Arrien expanded the continuum.  Her research and experience shared that sympathy amplified suffering because it emphasized the pity we felt for the another.  Sympathy often comes from the vantage point of “better you than me”.   When we’re empathetic, we end up doing the work for the other person, letting them off the hook because we take on the pain.  However, if we feel compassion we don’t have to go into the emotional state of the other, but we can be totally present.  The state of presence is healing.

Where are we going with all of this?  I want to be present with you.  I want to know what your life is like right now because it’s your true story.  When you share how you are right now there’s an aliveness we can experience any other way.  Let’s shift our perspective and begin asking this very important question and see how our experiences with others change and deepen.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, Empowerment, Living with Illness, newly diagnosed illness

What Makes Us…Us?

We all have that moment when we look in the mirror and truly see ourselves for the first time.  It might be the day of a big birthday, graduation from school, or for some, the diagnosis of a chronic or life-threatening illness.  It’s a moment when clarity mixes with curiosity.  A split second when you ask the question, “Who am I?”

I spend a lot of time in my studio and I listen to podcasts to keep me company.  This is a recent shift because music used to be my go-to studio mate, but there’s so much to learn that the podcast has been like being in a virtual classroom.  Listening to podcasts coupled with watching interviews on the DVR gives me plenty of material to convert into creative iterations of my life.

On Super Soul Sunday Oprah interviewed Pastor A.R. Bernard.  A pastor for forty years he has one of the largest congregations in the country.  Well-spoken and thoughtful, he gives you the feeling like you’re sitting in his study ready to experience an epiphany.  He turned to Oprah and said, “Every personal crisis starts with an identity crisis!”  Can you think of anything more poignant when considering the diagnosis of an illness?

When we couple the question of mortality, quality of life, and identity in one equation we’re faced with a big challenge…who are we?  What makes us who we are?  What do we need to learn?  How will this/these experiences change my life, change me?

I’ve facilitated thousands of hours of support groups over my twenty-five years as a therapist.  The question of identity is center to a diagnosis.  All too often people surrender to a label.  All the qualities they embodied prior to the doctor saying, “I’m sorry to tell you….” disappear into thin air.  There is a tendency to redefine ourselves by our diagnosis, our side-effects, even our limitations.  What would happen if we redefine ourselves by adding qualities instead of subtracting them.  Imagine adding qualities like determined, dedicated, self-loving, and conscious to your personal identity!

If I’ve said it once I’ve said it a hundred times in these posts, “We may not get well, but we can always get better.”  So how has your identity been altered?  What do you see in the mirror that you may not have seen prior to your diagnosis, or other life challenge?  What new qualities will you inhabit with your ever-evolving identity?

We’re all in this together…I’d love to hear your thoughts!

Posted in after the diagnosis, overcoming adversity

We Need To Change How We Interact In This World

Valentine ’s Day is right around the corner and stores are displaying merchandise and cards for the occasion.  I started thinking about the messages sent by some of the big companies like Ma Bell and Hallmark and what’s been lost with the invention of Facebook and other social media.  Ma Bell wanted us to “Reach Out and Touch Someone”, and Hallmark told us buying cards, “When You Want to Send the Best”.  These two company taglines spoke more, to me, than just about commercialism, but how we interact in the world.

I’ve watched the number of birthday cards dwindle significantly over the past four years.  I used to have a mantle full of cards, and now it’s down to a select few.  Don’t get me wrong, I get plenty of Happy Birthday messages on Facebook, but it’s different.  We no longer have to plan on how we interact.  We are now able to wake-up in the morning and see who we need to send a birthday wish, congratulate for an achievement, or commiserate about a dilemma.  What happened to sentiment?  Have we lost the ability to connect more than electronically?

I sent out a bunch of cards today because there are people who I haven’t spoken to in a while that I wanted to send a special message.  I want to appreciate certain people who have supported me, kept me in the loop of their lives while I’ve been traveling the country.  It gave me an opportunity to say I took the time to spend a few minutes devoted to connecting with you.  I know I may be a bit over the edge, but social media has left too many people connected to others with only a dotted line, and they’re still lonely.

When going through difficult times we need to make those phone calls, send those calls, and show that we’re making an effort and that this person matters to you more than just a count on your Facebook page.  Illness, divorce, death, financial struggle to name a few are life events that require deeper connections to emerge with a sense of peace and to have the ability to continue on life’s pilgrimage!

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, Illness Narrative, living with chronic illness, Living with Illness

We Walk This World As Pilgrims

We’re familiar with the pilgrims of the Middle Ages struggling to make it to the Holy Land. They overcame many obstacles, fought wars, and hopefully in the end found peace. There are many who make pilgrimages for personal reasons; physical challenges and healing of health issues, emotional freedom, or attaining spiritual enlightenment. The truth is that we walk this world as pilgrims because we’re all in search of something, even if you’re not aware of what it is in this moment.

Last night I facilitated a call for students working on their doctoral dissertations. I believe these students are on their own personal pilgrimage. They are expanding their personal and professional boundaries. They are taking on a pursuit that will change their lives forever. They are creating a soapbox on which they will stand for the rest of their lives. As someone who has completed this process I am honored and privileged to serve as their Sherpa, carrying the heavy load when necessary giving each pilgrim the space to move forward on their journey.

Richard R. Niebuhr, noted scholar from the Harvard Divinity School, stated “Pilgrims are person in motion, passing through territories not their own-seeking something we might call completion, or perhaps the word clarity will do us well, a goal to which the spirit’s compass points the way.” When we set out on a pilgrimage we have a nagging question that keeps showing up in our lives and is demanding attention. Many believe that the “good” life is one where we have a sense of completion. We have tackled the challenges set forth by that whisper in our ear nudging us to take action in our lives.

Roger Housden in Sacred Journeys in a Modern World writes, “Whatever its destination, what sets a sacred journey apart from an every day walk, or a tourist trip, is the spirit in which it is undertaken. It is sacred if it sensitizes the individual to the deeper realities of his or her own being, and those of the world in which we live.” Our pilgrimages are sacred because it’s part of our narrative. It is a catalyst for change. As Pilgrims we are making conscious what has been seeking a voice, an answer, or possibly leading us to new questions.

I’ve sat in many counseling rooms with those facing life-threatening illness and each person’s pilgrimage had similarities, seeking hope, some sense of control over their lives, and empowerment. Since not everyone who is diagnosed with an illness recovers, some individual’s pilgrimage is seeking a good death and making sure they do not have an unlived life.

Whatever your pilgrimage I hope you make each step a conscious one. Your pilgrimage will keep you consciously engaged in your life opening your body, mind, and spirit to new heights. Set out on a pilgrimage and experience the wonder this journey to the depths of soul will reveal!

Facing a chronic or life-threatening illness and looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to take an Art and Healing pilgrimage?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

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 after the diagnosis, coping with chronic illness, coping with life threatening illness, Having a Voice in Healthcare, living with chronic illness, overcoming adversity

I Wish My Vet Saw People

If you follow me on Twitter (@GregKatz2), Facebook, or on these posts you know I have a black lab named Tashi that was diagnosed with MRSA (Methicillin-resistant Staphylococcus aureus) about seven years ago. Half her life has been spent visiting doctors, taking a host of medications, and having numerous tests where she’s been poked and prodded to get cultures. Throughout this process she has endured pain and discomfort, never giving up her loving nature.

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After fighting her most recent infection for the better part of a year, I’ve had the chance to be grateful for her doctor (Dr. B). He’s dedicated to her well-being. He took her case and as a result changed the infection control policies at the Veterinary Hospital. Most of all, I’ve watched him spend time with Tashi, never giving up on her and always trying to make her as comfortable as possible. What could he teach medical students who will eventually be treating us in doctor’s offices and hospitals?

Meet the patient where they are. I’m fortunate because I feel as if I’ve become partners with my medical providers. I always ask questions and I’m aware of the latest research on my own conditions. There is no power play in the exam room. Our vet is very sensitive to the power dynamic and when he examines Tashi he sits on the floor so he can see her eye-to-eye. He will often bow his head so that she knows that he doesn’t have to be dominant, in theory. He’s also the keeper of the treats, always a way to endear himself to her.

Follow-up is very important to the health and healing process. I feel like I’ve attracted patient positive doctors. They’ve been concerned and their follow-up has been extraordinary. One of my doctors had ordered some lab work and I didn’t do it within a timely manner. I received a phone call from him saying he hadn’t seen the results come across his desk and wanted to make sure I had gone for the lab tests. I felt like he was definitely looking out for me. Dr. B goes above and beyond the call of duty. After Tashi has an office visit, the phone rings about 8pm a couple of days later (after the vet office closes), the doctor checking to see if she’s making progress. Wouldn’t you like a follow-up call from your doctor to see if you’re making progress?

Dr. B always dialogues about side-effects and outcome strategies. He’s clear about what I’m willing and unwilling to do for treatment. Some of the medications Tashi has been on have had such horrible side-effects that they have been removed from the repertoire of possible treatment strategies. Minimizing suffering while seeking treatments that work is paramount to us working as a team. Dr. B doesn’t make it a “my way or the highway” session.

What can you take away from my experience with a vet that treats Tashi as if she were a person? Never allow your doctor to talk down to you. Be clear that you may not have gone to medical school, but it’s your body, your health, and your journey. Let the doctor know what’s important to you regarding the relationship. I always share with the doctor my professional background in healthcare so he knows from the start I’m going to be very involved (sometimes too involved when I begin to self-diagnosis. Read my post on anchor bias).

Select a doctor that makes you feel like you’re a priority. Unfortunately I spent five months taking Tashi to the vet a minimum of three times a week for treatment so I had a lot of time to ask questions and discuss her progress. Stay in contact with your doctor so he has up-to-date knowledge of how you’re doing. Many healthcare systems have email for their staff; use it! Don’t be afraid to ask questions in between appointments.

Lastly, find a doctor who has a strong commitment to compassion. Dr. B has always treated Tashi as if she were his own. He has done amazing amounts of research on her condition and is always looking for the latest and greatest treatments for her condition. I wish he saw humans because I’d be his first patient!

Looking to explore how to select a physician that is willing to partner with you?  Looking for education, support, and inspiration when facing a health challenge?  Visit http://www.survivingstrong.com

Want to explore how art improves healing?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2