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 coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness

Have A Good Life: Lessons from Vacation Part 1

Recently I took a Trans-Atlantic cruise from Barcelona to Fort Lauderdale. After stopping at a few ports it was time to cross the Atlantic Ocean, a journey that would be seven days across the sea. The trip was fourteen days so there was plenty of time to interact with other passengers along the way. It’s not uncommon to become friendly with people you see over and over throughout the trip. On the last day when everyone is getting ready for departure we say our goodbyes. One person shook my hand and said, “Have a good life”. I walked away and began to think about this interaction. It left me wondering about the people we meet every day and the impact they have on our lives.

Unless you meet someone and make plans to cross paths in the future it’s likely you’ll never interact with those you meet along your life path. I found it interesting to exist in a microcosm of the world.   Twenty-eight hundred passengers and about fourteen hundred crewmembers created a city on the sea. The people I gravitated to I met at activities such as lectures and other scheduled meetups. Two weeks gives you plenty of time to maintain ongoing discussions in an attempt to get to know the others on the ship.

It’s not as if you become friends with everyone you meet, but you do have an affinity for certain people. You seek these people out because they become your onboard social network. It makes the trip more enjoyable, and in some cases friendships do develop.

It was the statement, “Have a good life” that made me consider who enters and exits my life over time. There are people who I have spent a lot of time with and over time when the group disbands the associations remain in tact through Facebook and other social media, but the day-to-day interaction seems to dissipate. How do we measure the impact and the lessons learned from those who enter and exit our lives? What is it that these people we gravitate to are sent to teach us on our journey of life? How can we make the most of the interactions we experience and develop a deeper understanding of our social nature and its impact on health and healing?

I’m grateful for the people I met, the stories I heard, and the experience of sharing the gift of travel with wonderful people. I was happy to deepen friendships with those I have traveled with before and extend my social circle with those I met who I know I’ll see again. I’m grateful for the life lessons I learned through anecdotes and activities. It’s important to know that all we want for each other is to “Have a good life”, but to hear it is reassuring!

Looking to further your journey of health and healing?  Visit http://www.survivingstrong.com

Want to explore how to have a good life through creativity?  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, 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

Posted in Caregiving, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, overcoming adversity

The Unified Person

One of the things I had to break myself from doing when I spoke was splitting parts of myself. I can look back and see how I had confused indecision with no commitment. If you’re wondering what I’m talking about let me give you an example. I would be discussing an issue and would find myself saying, “A part of me….” How is that possible? Did I really think that only the cells in my right pinky believed a particular thing and the rest of body was in revolt? I’ve spoke with many people over the years that try and exile a part of the body that is causing them trouble but that never seemed to work. Unifying the body, mind, and spirit is the only path to health and healing.

If we divide ourselves in physical, emotional, and spiritual beings it’s like having three people fighting for limited resources. When we unify our forces we create an incubator for healing. It’s that incubator that provides a safe place to nurture a strategy for growth, renewal, and peace. It takes some work, but it reaps huge rewards.

Dr. Jeff Miller shared, “Body and soul cannot be separated for purposes of treatment. For they are one, and indivisible. Sick minds must be healed as well as sick bodies.” Having had the privilege of spending thousands of hours with individuals facing chronic and life-threatening illness I understand the importance of a unified front. You can’t play the game we did as kids, if mom says no ask dad, because we diminish the odds for health and healing.

We have to remember that when we’re facing emotionally draining situations our bodies defenses are compromised. The ideal situation is that when one of the three components that makes us whole is feeling compromised the other two can step in and bolster the compromised part of our being. If you’re emotionally drained your faith may take over, sending in reinforcements helping until you’re emotionally restored. (I’m not talking about mental illness, that often requires the help of a mental health or medical professional)

We all have to remember that all three parts of our being won’t be firing on all engines all the time. There is a dance that happens between the three and understanding that our being is always in a fluid state will make the ebb and flow more natural and not so scary!

Experiencing the ebb and flow of the physical, emotional, and spiritual parts of your life?  Visit http://www.survivingstrong.com

Want to explore how to create a natural state of balance with body, mind, and spirit?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, newly diagnosed illness, overcoming adversity

Dead Sea, Black Sea, Red Sea…Pink Sea?

You may be wondering is there really a pink sea; Google it and see what comes up. The truth is there is no Pink Sea, but today is October 1st and you may be experiencing a Sea of Pink. Today begins Breast Cancer Awareness Month. The use of the color pink has brought enormous attention to the Breast Cancer community. It has become defining, creating a community of those diagnosed with breast cancer, those living beyond breast cancer, and their families.

I was in Houston in April at the annual conference of the Arts and Health Alliance. While I was in town walking the main road an army of pink passed me. They were in the midst of their annual Avon Walk for the Cure. Women, men, and children all wearing pink to show their support for the Breast Cancer community.

The color pink linked to the breast cancer community has created a link and a way for community members to show their connection to the community. It becomes more prominent this time of year when buildings change out their white bulbs for pink bulbs shining a pink glow against their buildings in support. Pink ribbons are in full bloom like a field of wild lavender. It’s truly amazing that an illness has gone beyond the diagnosis and has created a community of hope, inspiration, and education.

The breast cancer community has created a culture and that’s not an easy thing to do. They have brought together the medical community, the corporate community, and individuals for a common cause. We’ll see a month filled with news stories about mammograms, treatment updates, and news of new medications such as Perjeta (a drug given FDA approval this past week).

You may not be a fan of the pink culture. Barbara Ehrenreich, noted author, is anti-pink. On an NPR interview she was clear that she didn’t want to be buried with a pink Teddy Bear. She doesn’t want to be defined for having an illness. She may not want to be defined by the pink culture, but it has served many raising money and pressure to find a cure and new treatments.

It doesn’t matter if you support the pink culture. It does matter that you support those facing Breast Cancer and all other illnesses. Perhaps we can find ways for other illnesses to find a culture that will help make their need more notable!

Are you or a loved one facing Breast Cancer?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to heal 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, End-Of-Life Care, Grief, living with chronic illness, newly diagnosed illness

Can We Really Deny That Children Die?

Last week I wrote my 900th post for this blog. When I wake up in the morning I’ve started thinking about what could I possibly have left to say about health and healing, life and death, and overcoming adversity; and then a story pops up that all I want to say is, “REALLY?”

The Riverside Unified School District has banned John Green’s book The Fault in our Stars. The book has been cited as a book that will last the test of time because it’s a story about love, relationships, quality of life, and death. I read This Star Won’t Go Out by Grace Esther Earl, a real life account of a teen with advanced stage thyroid cancer. Earl and John Green had become friends and although there are similarities between the book and the memoir, Green’s book is fiction.

What was the reason for the Riverside Unified School District removing Green’s book from the middle school library? They didn’t want kids this young 11-12-13 to face mortality. They believe that reading about a teen dying would be too much for these kids to handle. Are the kids in Riverside living in a bubble like the Buddha prior to embarking on his journey to enlightenment?

Do you think that the principal of the school, the librarian, and some parents who voted really believe that children don’t get sick and die? I don’t know about you but if you ever watch television you can’t help but see a commercial for St. Jude’s Children’s Hospital. We have an entire network of hospitals in this country devoted specifically to the care of children and the Children’s Miracle Network. We have the Make-A-Wish foundation, giving children with life-threatening illnesses the opportunity to fulfill something on what we would call their “bucket list”.

I understand that death is difficult to speak about even for adult, but it does happen and denying it only causes greater pain. My hope is that no child has to personally experience illness and death, either their own or that of a loved one, but it will happen.

I’m disappointed that a school district would remove a book like this from their library because they are queasy about the topic. What I know about kids, maybe more so than adults, is that they are extremely resilient. They are inquisitive and would take these topics and want to discuss them, not shy away from them. When I was in high school, one quarter of health was devoted to death and dying. A progressive move on the part of our school district. Perhaps I should give Riverside Unified School District the name and number of my high school so they could temper their own resistance and fear.

Children die and it’s terrible. Removing a book that raises important questions is a travesty. The school should be ashamed of themselves.

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

Want to discuss difficult topics with children through creativity?  Visit http://www.timetolivecreatively.com

Follow me on Twitter:  @GregKatz2