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

Is Your Life Lived Conditionally?

I’ve been watching Oprah’s Super Soul Sunday, watching some amazing interviews.  Watching these interviews begins to engage my inquisitive mind and I begin to think about our relationship to others and ourselves.  We’re complex beings and we all have gifts and talents that allow us to live successful lives, and contribute to the Universe.

I guess the big question that comes up is, “How conditional is your relationship to your gifts and talents?”  I ask that question because for many of us have to squelch our gifts and talents to make it day-to-day in our jobs and everyday life.  We engage our gifts and talents when we have “free time” or in times of crisis.  Is that any way to treat your gifts and talents?

Which of your gifts and/or talents would you like to explore further?  What benefits do you derive when you engage in activities that utilize your gifts and talents?  Do you find that when you engage your gifts and talents there is a positive impact on your physical, emotional, and spiritual well-being?

Illness is just one of the many transitions we may experience in life.  During these times of transitions, obviously filled with stress and anxiety, there is a need to utilize all the resources, inner and outer, that are available to you.  Your gifts and talents don’t only have to be a well you go to when you’re thirsty.  Your gifts and talents can be a mainstay of your physical, emotional, and spiritual life.  They can be the nourishment you need to survive and thrive.

These are troubling times, even without an illness.  However, a diagnosis obviously complicates matters.  I’m amazed each and every time I engage someone in a conversation and they share their gifts and talents.  They’re face lights up so bright that it’s like looking into an eclipse; it’s blinding.  This is the exuberance that allows us to create a healing environment within our bodies, and in our interactions with others.

What gifts and or talents will you summon today and how will you infuse your day with possibility?

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

How Proactive Are You With Your Symtoms?

I’ve been very aware of my body for a very long time.  I know that many of you will say, “Well of course you know your body, what’s new?”  Well the truth is, and those of you with an illness I’m sure will concur, when you have an illness you have a new and intensified intimacy with your body, inside and out.

There are times when simple little things may turn in to big things.  While I was away, working out-of-state, I noticed that the amount of gum I was chewing had increased sharply.  You may be laughing at this point asking why chewing gum implies a symptom or illness.  Well to tell you the truth, I didn’t think about it for a couple of months.  When I returned home I began to wonder, much more focused, about what this could mean.

As I began to ponder what this might mean to my health it occurred to me that maybe I was chewing gum because I was thirsty.  As I began to explore this as a symptom I began to wonder about diabetes.  My maternal family has a long-standing history of diabetes.  My mother was diagnosed about four years ago with diabetes and began insulin injections a few months ago.

It was time for my annual lab tests checking my liver function and lipid panel.  When I called the nurse in the dermatology, I asked if it were possible for her to add a glucose test to the panel.  I was hoping she would be able to add this test instead of sending me to my primary care physician for this non-dermatology related lab test.  She did add this to my lab order.

I had the tests done and not only was my lipid panel great, my glucose level was right in the middle of the normal range. Obviously these results were great relief and one of those moments when I followed up an inkling in my body.  Having this knowledge of my body, my family history, and an knowledge of common illness symptoms helps as I move through life as a person with a long-standing health challenge.  My hope was not to add to the list of diagnoses on my medical chart.

How well do you know your body?  How much do you know about your family medical history?  Are you attuned to your body and do you notice subtle changes in your physical being?  These are important on your journey to health and healing!

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Life Motivation, living with chronic illness

Everyone and Everything Needs Energy!

Energy makes the world go round.  It’s something that is palpable and drives us to move forward in our lives.  Every system needs energy.  Every organization needs energy.  I had an experience last night that made me think about how organizational energy translates to personal energy, and in turn health and healing.

I attended a meeting of the art guild that I belong to, a textile arts guild.  The organization has about 275 members and has been in existence for twenty-four years.  Like many organizations there is an old guard, those who founded the organization or have been members for over twenty years.  These were the original leaders of the group and shaped the path of the organization.

I had been the President of the organization for two years and during that time I was always conscious about not only the energy at the meeting, but how to keep the energy level high and people engaged between meetings.  My monthly President’s message in the newsletter were meant to get members thinking, not only about the organization, but their role in the organization, and where they fit in the great world of art.

Last night I attended the meeting after a five-month hiatus (I’d been working in Tennessee).  The meeting was “fine”.  I don’t believe that “fine” is a compliment.  It’s just a comment on the meeting moving along.  Even the speaker was less than dynamic.  I was hoping to get re-energized after the five-month hiatus.  The only thing I was energized by were the moments when I reconnected with friends I hadn’t seen in a long time.

So how does that translate to your own health and healing?  What do you get excited about?  What keeps you engaged in your life and your healing journey?  How do you generate excitement for yourself to keep learning, continue experimenting, and design a life that will leave you with no regrets at the end of your life?

Energy is palpable.  It’s a force that is in you and around you.  Energy is what the body needs to heal.  Energy allows you to be tenacious in your healing journey.  It’s the momentum we need to tackle the challenges faced with any health challenge.

How do you experience energy in you and around you?  What happens when your energy level is less than optimal?  Are you sensitive to energy levels in others, even in groups and organizations?  How will you check your energy gauge and keep it above empty?

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

An Interesting Medical Journey for my Black Lab

You’re going to think I’m a bit strange because the story I’m going to share is about my dog.  Believe it or not, my dog Tashi has had more medical problems than most of us will have in our own human lives.

It all started about five or six years ago when she acquired Methicillin-resistant Staphylococcus aureus (MRSA).  I don’t know how she acquired this infection, but it has been recurring relentlessly over the years.  Unfortunately MRSA isn’t curable, it becomes a chronic, potentially life-threatening condition.

The incident this past week started last Wednesday when Tashi awoke limping.  Her back foot (location of the MRSA wound) was swollen.  She ate breakfast and took her place in the family room and didn’t move for seven hours.  We decided to take her to the emergency vet that evening because she wasn’t engaging in normal activities and she couldn’t get up off the floor on her own.

The vet we saw, a young vet, was quite personable and very good with Tashi.  He did a thorough exam and was respectful of her pain limits.  The thing that caught my attention was his personal shock at how swollen her foot and leg had become.  He was perplexed hoping that maybe she had an issue with a bone or joint.  Because of the MRSA he had to be very careful about any biopsy or culture because he didn’t want to spread the MRSA if in fact it was present.

The radiograph didn’t show any abnormalities, a huge relief.  He did perform a culture of the wound on her foot, non-invasive.  He also prescribed a very strong antibiotic and pain medication.  We took her home with the hope that  she would begin the healing process.

Unfortunately as Thursday progressed, her leg became more swollen and this was worrisome.  The next step was to take her to her regular vet.  One more appointment and when he saw her foot he was also a bit perplexed and concerned.  She wasn’t putting pressure on her foot and the leg was swollen up to her hip.  He prescribed a second antibiotic and now we wait for the culture results.

The sad part is that animals can’t tell us other than behavior about their physical problems.  I feel fortunate to have medical professionals that are engaged in her well-being and take measures to create increased odds at healing the infection.  I didn’t know that the field of veterinary medicine doesn’t have a specialization in infectious disease.  The specialty seems to be on the horizon, but until that happens either a general practitioner, or in Tashi’s case her dermatologist/allergy doctor have to serve as our medical resource.

How does this translate into the experience of humans?  We don’t always have an answer for symptoms that arise from an illness.  It’s important to feel comfortable going to a specialist if you don’t feel that your illness/symptoms are getting better.  In addition, I felt it important for her regular physician to see her because he knows her history and her body.  He understands her response to past medications and infections.  He knows her temperament and tuned into her response when he exams her.  These are important because her history may have clues to heal the current medical dilemma.

Things are still uncertain and the fact that she’s over twelve years old doesn’t soothe my anxiety.  I can see the desire in her eyes to get better (my personal projection) but I’m hoping we make it through this health crisis.  I hope you maintain that fire in your soul to get better or well.

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

Transitions!

Yesterday I spoke about the closing of Visual Aid, an important San Francisco nonprofit.  I received an invitation to a fundraising event taking place in the coming days.  You may ask why would a nonprofit that’s closing continue to promote events.  I’ll tell you why; it’s because they are forward thinking.  They are showing their true concern for the participants in their program.  Julie Blankenship, the Executive Director, is creating a transition plan for those who have depended on the organization for over twenty years.

Transitions are difficult for everyone, but when you have a chronic or life-threatening illness transition becomes a way of life.  I’m not saying transition is easy, but I am saying it becomes more of a constant than for those without a health challenge.  It’s one of the most trying aspects of a health challenge…change!

What if we took the idea of transition management and applied it to our lives?  As someone with a health challenge, it’s easy to get caught up in the trials and tribulations of the day-to-day uncertainty of what our bodies will do at any given moment.  It’s not uncommon for medications to change their level of efficacy.  Symptoms may change or emerge without notice (symptoms don’t send a warning to our conscious selves).

I’d like to say that change is easy, but I’d be faking.  Change is often equated to loss.  This is apparent when we see the emails coming from Visual Aid as they begin the final phase of their story.  I hope we can all take lessons from as we move through out own set of change and loss.  Visual Aid is being proactive, supportive, and compassionate in their transition.  How can we become more proactive in our lives when it comes to our health (I’ll discuss this more in days to come)?  How compassionate are you to your own body, emotional state, and soul?

Transitions allow us to seek options.  They provide us with a continual set of crossroads allowing us to consider alternatives.  Possibility has to be a part of our consciousness.  What lies ahead for the participants of Visual Aid I can’t say, but I can ask you, what are you going to do today to manage your life transitions?

Posted in after the diagnosis, art and healing, Autobiography, coping with chronic illness, coping with life threatening illness, creativity and health, Having a Voice in Healthcare, Storytelling

Who Will Fill the Gap?

I received a very sad email this morning.  Visual Aid, a San Francisco nonprofit, is closing its doors at the end of the month.  Visual Aid’s mission is to provide resources to artists with life-threatening illness to continue creating works of art.  They provide financial assistance, an art supply bank, entrepreneurial workshops, and exhibition opportunities in their gallery.

I found out about Visual Aid almost 3 years ago when I began doing research for my dissertation, “Artists and Illness: Narrative and Its Impact on Autobiography and Meaning Making”.  The Executive Director, Julie Blankenship, a true arts community leader, assisted me in finding and scheduling artists to interview for my research.  This is the love and care that Julie has offered the Visual Aid community for the past eleven years.

This organization has served as a place for artists with life-threatening illness to make connections aiding in eliminating the isolation often felt by both artists and those with an illness.  They have served to gain exposure for artists who may not have the resources to buy art supplies or promote their work because they have limited connections in the art community.

Why has this organization been so important?  They have given voice to a community that holds a story we don’t often hear.  Visual Aid artists tell their pathography (stories of their life and illness journey) that we usually only read about in books.  I came to see clearly that artists wouldn’t write their pathography, but they certainly create works of art sharing that journey.  I was and still am deeply moved by the artists’ works of art, their story, and their generosity to share these personal moments in their lives.

So who will fill the gap?  Illness isn’t going away!  Artists with illness aren’t disappearing from the planet, although eradicating illness would be phenomenal.  Who will be the guardian angel for these artists with life-threatening illnesses?  These stories need to continue because they are a part of our social fabric.  The provide insight into the disease and healing process.  They share experiences of the social aspects of illness that can only be told through art.

Without an organization like Visual Aid we may potentially lose part of our cultural story.  Even though the stories of individual’s illnesses will continue, without the artists’ stories, it will be incomplete.

As we say goodbye to Visual Aid, I hope you’ll consider ways to continue promoting the stories of artists’ with illness.  We need to have the complete story of healing and/or coping with illness, not just the written word!!!

Posted in art and healing, Autobiography, coping with chronic illness, coping with life threatening illness, creativity and health

Where I’ve Been…Where I’m Going

It has been almost five months since I last wrote, but I’m back to share my experiences, thoughts, and questions I’ve developed over that period of time.  The last 6 months of 2012 was spent completing my doctoral dissertation, and the first five months of this year I have been in rural western Tennessee for work.

I had the enormous pleasure and honor of interviewing artists with chronic and life-threatening illnesses for my dissertation.  I completed my dissertation the end of July and successfully defended my dissertation the end of March.  I have to share that being called Doctor is a bit surreal, but still pretty cool.  It has been a long journey, six years to complete this accomplishment.

What have I learned from the dissertation journey?  I learned that when you are totally engaged in a process the time flies.  I learned that being of service to others is a blessing.  I learned that it’s never to late to begin a journey that fills your soul.  The completion of the dissertation was a huge accomplishment.  However, the oral defense was a spiritual experience.  Having three examiners share some special time, ask provoking questions, and request that I delve deeper into the subject I spent over two years exploring was uplifting, exhilarating, and terrifying.

The last part of the dissertation process took place while I was working in rural western Tennessee.  I spent over four months in a farming community.  It was a close-knit community and somewhat isolated from things I take for granted like cultural centers and a bookstore.  However, I did learn about living in community, knowing everything about most of the people in a town, and how to thrive in a new environment.

I’m back at home and getting ready to travel to San Francisco for graduation.  This will be the culmination of my educational career (at least I say that for right now).  I’ll spend some time with my friends who took the dissertation journey with me and also received their PhD.  I’ll be honored by the faculty for this glorious accomplishment, and celebrate the result of perseverance, tenacity, and love of a subject.

Where will I go from here?  I want to begin sharing my background in art and healing.  I’d love to come to a state, city, town near you and share the impact of your personal narrative on how you share your autobiography and its impact on meaning making.  We all have a story that needs to be shared.  Our culture requires that we share our stories so that we create a cosmic gestalt.

I look forward to sharing this next part of my journey.  I hope you’ll join me!

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

Why Are We So Caught Up in Reality TV?

I have to admit that when it comes to television; I’m hooked on reality shows related to singing and dancing.  I’ve been watching NBC’s The Voice, and they are down to the final four.  These four are competing for a record contract, and of course, fame.  What I like about this show is that they don’t have an age limit, so it’s really about the talent, not the teenybopper vote.

I’ve heard Anderson Cooper confess that he’s a reality television junkie.  I guess when you cover tragedy all over the globe; reality television is a break from reality.  So why do we need to escape from reality?

Those of you who have been diagnosed with a chronic or life-threatening illness know how hard life can be since the diagnosis.  It makes you wonder how much more real can you get than living your life filled with doctors appointments, lab tests, and trips to the pharmacy.  Being in your body is as real as it gets, so why don’t you have your own reality television show?

It’s interesting how illness can be a storyline on a television show, but not the focus of the show.  Obviously there have been illness specific movies or theater productions focusing on illness such as WIT or The Diving Bell and the Butterfly, but no network or cable show focusing on the reality of real life illness.

I’m grateful when actors such as Michael J. Fox are guests on talk shows because he discusses the reality of living with illness.  He gives an unfiltered account of his life with Parkinson’s disease, and how he prepares himself when he has to go to work.  That’s as real as it gets!

Everyone in life has some type of struggle, but illness poses unique challenges.  It impacts not only you but also your family.  It can physically separate you from others, more out of fear and ignorance than from malicious intent.  You’re often misunderstood because throughout the day your life may revolve around other things than going to the grocery store and picking up the kids from soccer.  It’s multifaceted and often feels like a tightrope act.

When you’re watching reality television, please give yourself credit for living a life that is more real and more important than any program on television.  Become the success you are striving for and that will prevent you from being voted off the island!

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

Lessons from Bella

I have two dogs and both have had their fair share of medical issues.  I’ve talked much more about my black lab Tashi who has suffered with recurrent infections due to MRSA.  I’ve learned a lot about facing illness and creating a new normal from her.  This past weekend my other dog, Bella, visited the vet because of a cyst in her ear.

As it turns out, Bella has a hematoma in her ear.  It was drained and a cortisone injection to reduce the swelling was administered.

During the examination the doctor noticed Bella required dental work with the probability that a tooth would need to be pulled.  If that weren’t enough, she has a cyst in the middle of her head that we decided is she’s going to be under anesthesia should probably be removed.

Bella was sent home with a bandage covering her ear.  Unfortunately, she kept trying to remove it so we had to get one of those big radar dishes for her head.  The poor thing was bumping into walls, tripping over things, and was generally a bit disoriented.

This morning I took Bella to the bet for her procedure.  She was very good in the exam room, probably because she was scared.  She began to shiver.  Her anxiety was evident and trying to console her did little good.  The vet was very good with her and he too tried to console her.  So why am I talking about a 10-1/2 year old dog?  Because dogs don’t understand their pain, the medical procedures they endure, or adjusting to medical devices for their own protection.

On the other hand, as humans we also don’t understand pain, medical procedures, or medical devices that become part of our every day lives.  Too many of us try and make sense of our illnesses, but is that even possible?

When we enter the medical arena we often try and hide our fear and anxiety, but it still always comes through.  Because illness is so disorienting how do we try and alleviate the panic?  It’s important to have people in your life that will help you disperse the anxious energy.  Talking, engaging in creative activities, finding a spiritual director, illness coach, or psychotherapist helps with those anxious moments.

What would happen if you really experienced the anxiety so you could disperse it into the universe?  We expend so much energy trying to hide it or suppress it that we are continually exhausted physically, emotionally, and spiritually.  I had a clinical supervisor who said, “You can’t get out of something if you’re never in it”.  It’s like dancing around the mouth of the volcano…sometimes you have to jump in so you can know what you’re getting out of, experientially.

My dogs are my examples for coping with illness.  They seem fearless, truly a projection.  They provide me with insights into the illness experience that I wouldn’t have made conscious any other way.  It is because of that, that I am eternally grateful and I make sure any way I can be of service to them I will.

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

No Day But Today…

What if every day were encapsulated and once it’s over it’s gone forever?  How can we best utilize the resources we have on any given day?  How much extra energy are you spending on what you can’t change?

These are all big questions.  I saw a quote today that inspired me, “Don’t let yesterday use up too much of today.”  You may not be carrying around the energy from the past few days, but are playing scenarios in your head wondering the “what if” question?  How much time are you wasting on the Monday morning quarterback strategy as you face life with a chronic or life-threatening illness?  It’s an important question because every drop of energy you use on what already happened detracts from the energy you need to deal with what is happening in the here and now.

I’m sure for some people ruminating over past events have a certain level of comfort.  Let’s face it; we’ve already lived it, so we know it.  However, wouldn’t you rather start fresh and approach the day as a new beginning?  Living the day for what it has to offer allows you to stay in action.  It promotes a healthier life view and that translates into immune boosting activities within your body.

The other element involved in allowing yesterday to eat up today is the simple matter of time.  We’re only given twenty-four hours in a day.  As the song from the musical Rent reminds us, that translated into five hundred twenty-five thousand-six hundred minutes.  So how do you measure a year?

Robbing yourself of time today limits your life experience.  It prevents you from capturing the experiences, and information you need on your journey to wellness.  I realize that we can’t start and finish everything every day, but most of us carry around too much from previous days clogging up the new experience pipeline.

What will you do today to limit yesterday’s intrusion into your life today?  It’s all about containment.  Let the past be the past unless you’re using it for lessons learned, but don’t try and relive the past…that’s only in fantasy and science fiction movies.