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, 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, Doctor's Visits, living with chronic illness

Ethics On Call

I’m fortunate to live near the University of Colorado Health Sciences Center. The school has a medical school, nursing school, dental school, and pharmacy school. Having these four disciplines on one campus affords them the opportunity to create programming that cuts across all four professions. They recently started a monthly ethics discussion raising issues the staff and students may/will come across in their careers.

Yesterday’s talk was about Physician Assisted Death, a topic that not only cuts across cultural and religious arenas, it is also being debated in many state legislatures. The presentation focused on two cases, both women, a twenty year old with end stage ovarian cancer and a forty-eight year old with leukemia. The cases were both interesting, but what I found particularly interesting were the responses by some of the students about the ethics involved.

I’ve been a mental health practioner for over twenty-five years. I’ve spent most of my career working with those diagnosed with chronic and life-threatening illness and I can tell you, you never know what how you’re going to react until you’re in the situation. Training is good because it gives you a basis for your decisions, but it’s the things not in text books that float around you like a cloud waiting to rain down at any given moment.

One of the things that caught me off guard was one student who was quite vocal. He was responding to a question from the moderator, but his sense of surety was a bit unsettling. I believe in having conviction but when it shuts off the possibility of anything contrary entering one’s consciousness I get concerned. My hope is that when these students enter clinical work and throughout their careers they will have the awareness that nothing in ethics is black or white. If you’re not comfortable with the “gray” zone, then perhaps medicine is not the right field for them.

What can I tell you after participating in yesterday’s dialogue? Create operational definitions with your physician about what you mean when you use words like suffering, distress, and control to describe your health. Have as many things written down in your medical chart about your wishes about care, especially end-of-life care. Don’t’ leave it up to the medical staff to assume, guess, or translate your wishes, make it know and do so with conviction.

The less you leave up for interpretation. Give yourself the peace of mind you need and deserve by having the hard dialogues with your medical providers. It will save you a lot of trouble and will reduce the risk that your wishes won’t be honored!

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

Want to express yourself 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, Living with Illness

What I Continue To Learn From My Dog About Living With Illness

I have a black lab mix, adopted from the shelter at 9 weeks old. Her name is Tashi, from Alice Walker’s book The Color Purple.   We’ve shared many amazing times together and continue to do so even though she’s slowing down a bit at the age of thirteen. About seven years ago she contracted MRSA (Methicillin-resistant Staphylococcus aureus), a staph infection that is often drug resistant. In the past, we would tame the infection and get at least a few months of remission. Currently, we’ve been fighting a never-ending infection that keeps mutating eluding our efforts for remission.

I can tell you about the long list of doctors and tests she had endured, but I want to focus on the appointment we had yesterday. It was time for a new culture because the antibiotic we’ve been giving her the past six weeks stopped working. The progress stalled and that just means without further intervention we would start moving backwards.

The doctor came into the examination room and we had our usual conversation about treatment possibilities and then he took Tashi to the back to secure the culture. The culture entails giving her lidocaine (a numbing agent) to minimize her discomfort. The doctor then takes samples the size of a pencil eraser from her foot. He then closes the puncture site with sutures that she’ll have in for the next three weeks.

When the doctor walked her out to the lobby he told me when to expect the results. He then said, “This is the best she’s ever done, I guess we become accustomed to things that we never thought we’d have to endure.” It was an odd thing to hear, but I got it; she’s a trooper.

Every time we got to the vet I’m amazed that she doesn’t fight me upon entering the building. The staff adores her and gives her love. The doctor, the perpetrator of what some might call medical intrusion, adores her and treats her with the utmost respect. She has an innate understanding that even though these people inflict pain, no one is out to harm her in any way. Her level of trust and “go with the flow” mentality seems to diminish the trauma and pain of the procedures she so effortlessly endures.

Healing environments have to be built on a foundation of trust. Trust that the medical team is on your side and that anything they’re doing is to help, not hurt. They need to find ways to provide a level of comfort because procedures can be painful and are often scary. Tashi is always surrounded by a loving energy that seems to shield her from the trauma of the procedure.

Tashi is a role model for what it takes to keep on going with a potentially life-threatening illness. She is able to endure procedures, endless rounds of medications causing side effects like loss of hearing and yet she’s loving, playful, and trusting. Trust is something so crucial on the health and healing journey and I continue to learn how it manifests by watching what Tashi endures on a daily basis. She’s my teacher.

Diagnosed with a chronic or life-threatening illness? Looking for support, education, and inspiration? Visit www.survivingstrong.com

Interested in Art and Healing? Visit www.timetolivecreatively.com

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

The Benefits and Pitfalls of Having a Prognosis

It shouldn’t be a surprise that after you receive a diagnosis of a chronic or life-threatening illness the recommendation is to get as much information is possible. It’s easy to research an illness in our age of technology. In addition, many of those diagnosed with a particular illness have founded organizations to support those with that diagnosis with the intention of providing information and support.

The idea of getting information and meeting with your doctor is part of the pilgrimage to health and healing. Is information-seeking behavior a Western society cultural phenomenon? I’ve read many accounts about Asian cultures who don’t share the diagnosis of cancer with the patient. It’s a way of protecting the patient from weight of the diagnosis. In this case, the patient isn’t given the choice; it’s hard to fight cultural norms.

One of the things most people want to know about is the prognosis. We’re conditioned to want the know about the outcome before we’ve even started treatment. A prognosis is a number. It’s a guess, an estimation, based on past anecdotal and research metrics. The prognosis for some is a saving grace because the odds are in their favor and a curse for some because the numbers don’t favor their survival.

I watched an interview on Good Morning America with Stuart Scott from ESPN. Scott was diagnosed with cancer. He tried to create as “normal” a life as possible but he was in for a huge surprise. Two years after his first diagnosis and treatment, he was given another cancer diagnosis. He told Robin Roberts that he did something very different after the second diagnosis; he chose not to know the prognosis.

Scott explained that the decision about self-preservation. He didn’t want the prognosis because he didn’t want to be frightened. He’s sharing his belief that knowing the prognosis could possibly bias his body, mind, and spirit connection as he devoted his whole being to health and healing.

We know there are no guarantees that we’ll all live long lives. The prognosis is like playing the odds in Vegas. How would you bet if you saw the odds on the board at the casino based on your prognosis? Do you go for the favorite, or the long shot? Are you optimistic or pessimistic? How does knowing the prognosis impact your motivation, perseverance, and will?

One of the key points that Scott made during his interview was his personal belief that there’s a difference between being alive and living. He believed that knowing the prognosis would impede his desire and ability to live. He didn’t want to simply be alive; he wanted to give his all to his family, his work, and himself. His desire to continue living life to the fullest was as much a part of his treatment as any medication given by the doctors

Do you thrive or dive with too much information? When is too much information a help or hindrance? What would you do differently with your life if you were given the prognosis, good or bad?

Looking for education, support, and inspiration when facing a chronic or life-threatening illness? Visit www.survivingstrong.com

Interested in Art and Healing? Visit www.timetolivecreatively.com

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

No One Is Immune From Worry

I’ve been working in the field of chronic and life-threatening illness for over twenty years. Sitting in an amazing number of support group meeting rooms I’ve been witness to stories about how the participants came to know of their diagnosis. The stories all included a common component, the moment they knew something was amiss worry set in and accompanied them along the path to diagnosis.

Over the past couple of months I’ve been having a number of pulmonary symptoms. My breathing has been labored and simple exertion has sent me running for my inhaler. The inhaler is supposed to be used as a rescue measure; I needed a lot of rescuing. This problem breathing sent me to the doctor and on the odyssey began.

While telling the doctor my story he decided to do an EKG. Prior to entering the doctor’s office, I never considered the notion that it could be my heart. I felt my blood pressure rise. I wasn’t concerned with the test; it was more the element of surprise that created this sense of panic. The test was easy and fortunately it didn’t show any abnormalities. Then came the next surprise, he was sending me for a nuclear stress test.

Along with the test for these problems I was due for a colonoscopy, the joys of reaching fifty (actually I’m a couple of years late). I was given the laundry list of prep for the test and then set off to the GI department. The doctor came in and explained the procedure and then asked if I had any questions. I explained that I was a medical social worker and knew the process. I also told him that I couldn’t change the results of the test as I was laying on the gurney. I would await the results of the test and at that point in time I would take whatever actions were necessary.

I was telling my mother this story and she said, “I bet your doctor wished he had a hundred patients like you.” I had a calm and recognition that at the time of the test I couldn’t change the results. My body would do or done whatever it was going to do and the only “control” I would have would be how I handle the findings/results.

So why did the initial tests cause worry and the colonoscopy didn’t result in the same angst? The EKG was a surprise. I wasn’t surprised by the pulmonary tests, but the cardiac tests caught me off guard. The same with the colonoscopy; it was scheduled and I prepped for it so I was prepared for the test itself, the results remain to be determined.

It doesn’t matter how prepared we are, there are things we will worry about. Worry tends to be a useful emotion because it never changes the outcome. The only thing worry does it raise blood pressure, make us anxious, and propel our mind into a spiral of “what ifs” that ends in creating worse case scenarios.

We’re not immune to worry. How we handle the worry is the only control we can ever possess. Understanding what our worry triggers are can help as we move through life. It allows us better understand our psyche. We become more aware of our fragility and that is a scary process. There is a difference between fragility and vulnerability (something to be explored down the road). Fragility leaves us exposed to what we perceive as harmful to the body, mind, or spirit.

What do you tend to worry about? How do you handle that worry?

For more information about living with chronic or life-threatening illness go to www.survivingstrong.com

Interested in art and healing visit www.timetolivecreatively.com