Posted in Healthcare

Lack of Insurance and Self-Medication

I’m witnessing first hand how desperately we’re in need of “good” healthcare reform.  I’m working with a guy in his mid-forties.  He’s overweight, has high blood pressure that he takes medication for, and is under a tremendous amount of stress. 

The other day at work he told me he was having heart palpitations.  He didn’t understand that what he was experiencing wasn’t a palpitation but an irregular heartbeat.  I asked him to call his doctor immediately.  The problem is he lives in Florida and we’re working in Texas.  It was a Sunday afternoon so I had him leave a message so they would get back to him first thing Monday morning.

He’s off on Monday, so on Tuesday he reported that he spoke with the Nurse Practitioner (NP) and she wanted him to come in for an EKG.  He told her he was out-of-town and that he’d call back in a few days.  He’s not going for an EKG locally because he doesn’t have insurance.  He’s hoping the NP will simply write a prescription for a new drug with different side-effects instead of checking to see if there are greater problems.

In addition, on his own, he’s changing the dosage of his medication.  All of this is frightening, but it’s indicative of a healthcare system that is so expensive that those without insurance will sacrifice their health, possibly their live because it’s too expensive.

Personally, I would never leave my house if I didn’t have health insurance.  I’m fortunate and grateful for the insurance I have.  I can’t imaging having to deal with a long-term health issue and potentially making sacrifices because each doctor visit or prescription meant possibly not making a mortgage payment, or putting food on the table.

I’m not sure what the solution is, but there’s got to be a better solution than what’s currently on the table.  I don’t believe the new healthcare reform will change all that much, and for people like my co-worker I don’t know that his ability to obtain reasonably priced healthcare will be in his future.

For those without insurance, many of the pharmaceutical companies have patient assistance programs.  If you need a low-cost or no cost doctor visit check a community based health clinic.  Many are funded to provide services to those who are uninsured.

Whatever you do, don’t play doctor.  Don’t self-medicate.  Don’t take it upon yourself to determine what tests you need or don’t need.  This is the time for you to make your voices heard because healthcare is vital to the sustainability of our culture.

Posted in art and healing, creativity and health

With A Song In My Heart

Welcome to Art and Healing Wednesday!!

I grew up in the NY/NJ metro area.  One of the joys of living that close to New York City is the opportunity to see Broadway shows with the original cast and just as they open.  Being involved in drama in high school, we often went to the theater to learn, but most of all to enjoy the performance.  I’m particular to the Broadway musical.  They are timeless, demonstrated by the revival movement on Broadway, and convey wonderful messages.  It’s interesting to see some of the shows that have done very well over the past years.  The two I’m thinking of in particular are Rent,  and Spring Awakening.

I wanted to focus on these two because they really focus on what I believe are social issues.  Rent spotlighting the AIDS crisis, and Spring Awakening dealing with teenage sexuality.  What compels these composers and playwrights to create these works?  It’s their personal conviction to use their voice, their words, and their songs as a way of getting a message out to the masses.  It gets their message out in a social acceptable manner, much different from picketing or shouting negative words at press conferences.  In addition, they get to share their personal experience with these social concerns.

Think about the musical for a second.  In many, unless it’s a rock opera, the characters have dialogue and then at poignant moments break out in song.  I watch the movie Hairspray quite often.  I’m always amazed at how the song punctuates an experience, emotion, or message far better than mere words.  It’s the combination of the words, the music, and the person singing it that brings it to deeper levels of experience for the audience.

Every time I watch Hairspray, I often wonder what the world would be like if we lived it like a musical.  We go through out daily lives and at specific moments of joy, anger, or some other intense emotion we broke out in song how the world would change.  I say this because following the diagnosis of a chronic or other life-altering illness you may experience deeper emotions that come and go often without any warning.  Imagine having a song that you could sing that allowed the angst or the bottled up frustration to melt away on the breath of your song. 

There’s a song in the show Hairspray that I listen to often as a reminder of how during times in our lives things have to change…hopefully for the better.  The song, “I know where I’ve been” is moving and a definite show stopper.  I hope you find a song or songs that allow you to express yourself melodically so that you can release the emotions that don’t serve you and intensify those that do.  This is one more way to activate your immune system through the mind-body connection.  The song sung with feeling tells the body what it needs to know.  What a fun way to communicate.

I hope you go out and find your song.  Let me know what musicals or songs have proven powerful for you so we can share the wealth!!

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

The “Impossible” Dream

Last night after I got home from work I was scanning the online version of the New York Times.  On the front page was a headline about U.S. Senator Lisa Murkowski.  Murkowski is a republican Senator from Alaska.  Recently, Murkowski lost her bid for re-election in the Alaska primary election.  The article discussed her decision to try to win as a write-in candidate (we’ll see how that goes).

The thing that caught my eye was a comment she made in a press conference.  She told the listeners, “In the Ancient Aluet language, there is not word for “impossible”.”  Whether or not you want to believe that applies to politics is irrelevant.  The idea to focus on is how have we become a culture that focuses on what’s impossible?

Following the diagnosis of a chronic or other life-altering illness the messages the mind sends to the body is important for healing.  If the mind tells the body that health is impossible then the body will come to believe and eventually give up. When taking on a health challenge the body, mind, and spirit must be in sync.  The same message must run through all levels of your being.

Fortunately, technology and scientific advances have made what was once “impossible” ….possible.  Think of the medications that have been invented.  Consider treatments like cyberknife that twenty years ago would have been “impossible”.  Look at the growth in utilization of complementary therapies like acupuncture to relieve symptoms and stress (although thousands of years old its acceptance has risen in the past decade).

I’m not sure why we dwell on the impossible.  Perhaps it’s a comfort to some when their treatments don’t work.  perhaps the idea of something being impossible relinquishes them of any responsibility they have for their own health and healing.  It’s perplexing because every day brings new possibility.

There’s a good book that came out some years ago called, The Art of Possibility, written by Rosamund and Benjamin Zander.  It’s a good jumping off point to kick-start your revised belief system.  Give yourself every opportunity to get better and believe in what’s possible!!!

Is there something you believed was impossible?  How are you handling making the shift from impossible to possible?

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

What Do You Want?

I was thinking about this question because it would seem obvious.  As I pondered the question, “What do you want?” what I realized is that if you’ve been diagnosed with a chronic or other life-altering illness the answer is simple; your health.  Once I thought about the simplicity of the answer it made me wonder about the real question that follows the diagnosis of an illness.

The question we should be asking is, “What don’t you want?’  If you what you want is health, then the actions would seem straight forward.  You would engage in activities that promote health.  You can read articles, take classes, follow the doctor’s orders and the hope is that you will get better, even if that means not getting well.

However, if you ask the question, “What don’t I want?” it places the emphasis in a different direction.  It makes you look at the possibilities of hitting obstacles and then forming solutions to avoid those potholes.  The obvious things for many people when asking the question, “What don’t I want?” is obvious; you don’t want to die.  I’m wondering once you get past that existential horror; what do you really not want?

I know for me any time I ask myself that question the immediate response is “pain and suffering”.  Short-term pain I can take and understand, but long-term, non-relenting, never-ending pain would be another story.  One of the things I have to focus on in my planning is to make that wish very clear to the person who is my Durable Power of Attorney for Healthcare.  In addition, I want to discuss this with my doctor and other family members so we’re all on the same page.

What I know is that when I ask the question, “What don’t I want?” It shifts my thinking.  I’m more inclined to think of ways to avoid what I don’t want.  I may accomplish that with food, rest, and exercise.  I may avoid those things I don’t want by engaging in my spiritual practice.  I may avoid isolation by joining support groups, or as I’ve noticed lately from my cell phone statements, calling and texting are ways for me to stay connected and feel the love others have for me.

Asking the question, “what don’t I want?” makes me and hopefully you think about quality of life issues.  I’m hoping that it engages you in your care so you can work tirelessly at avoiding those things you don’t want.  You have to identify them so you can make plans to avoid those pitfalls. 

I’d love to hear what you don’t want and the decisions you’re making to avoid those obstacles.

Posted in Caregiving


Welcome to Caregiver Friday!!

You may be wondering why the title of this post is written as it is so let me explain.  I’ve decided to take the next 9 Fridays, taking each letter and writing about an aspect of caregiving that corresponds to that letter.  So as they say in the song from the Sound of Music, “Let’s start at the very beginning, a very good place to start.”

“C” is for Courage

When I speak of courage in caregiving I’m not thinking of the courage exhibited by our soldiers as they go off to war, putting their lives on the line.  I’m talking about the courage of conviction and the courage of consciousness.

The courage of consciousness means your ability to recognize the importance of caregiving.  It’s the courage to be aware of the vulnerability of the person you’re caring for due to illness or injury.  It’s your level of character that draws you toward the intricacies of caregiving.  It’s courage on the emotional and spiritual levels.  Courage is a big issue, just think of the Lion in the Wizard of Oz.  It entails much more than simply running into burning buildings; it is a different type of challenge zone when caring for someone sick or injured.

The courage is that of commitment.  It’s easy to say you’re going to be a caregiver either out of duty or love and another to actually follow-through and act on those convictions.  It’s the capacity and the courage to commit the process; for many quite a long haul and without knowing at the beginning how it will end.  It’s a commitment to the person and the courage to maintain the relationship through what will often be difficult or challenging times.

It boils down to this…Caregiving is courage of the heart and soul.  The word for courage comes from the French word “coeur” meaning heart.  That’s where courage resides and I thank you for having the courage to serve as a caregiver in the life of someone who is currently challenged by illness or injury.

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

Who’s the Master and Who’s the Student

**A note of gratitude…This marks  the 600th post on Pilgrim Pathway/Surviving Strong.  Thank you for sharing this journey with me!!**

Everyone wants to think they’re an expert, especially in the field of medicine.  We know that medicine, diseases, and treatments change frequently.  What our bodies are exposed to changes.  What technology provides for treatment changes.  How we gather information propelling forward on our journey to wellness changes.  I say this because there may be times when you have an emergency, or your provider is away and you meet up with a doctor who isn’t as disease savvy as your own…what do you do?

I know that many doctor’s/medical providers may feel threatened because the words “I don’t know” are not usually part of a medical provider’s vocabulary.  I think they choke on the words instead of showing humility.  It can be difficult for many patients to assert themselves in these instances because we’ve been indoctrinated to believe that doctor’s know all, and will guide us in the direction of wellness.

Let’s talk about assertiveness for a moment.  When I was in high school I was part of a team who was asked to serve as hall monitors for night school at the beginning of the school year.  We’d provide the adults with the layout of the school and show them to their classrooms.  I’d be standing in the hallway when a meek mannered individual would approach and ask in an almost whisper, “Can you tell me where the assertiveness training is held?”  Aside from the smirk in my head, I’d show them to the class and report back to my post.  I was amazed and thrilled that so many of these individuals were doing something about the non-assertive nature.

Back to our matter at hand…it’s important to have the capacity to be assertive, not aggressive.  It’s about setting boundaries if the medical provider’s information seems a bit off-base.  It’s fine to ask if there’s a specialist on-call who can serve as a second set of eyes and ears.  It’s legitimate to request from the provider why they are choosing this treatment or medication at this time.  There are some providers who may believe this is questioning their ability; that’s when it’s imperative that you offer the medical provider your expertise.  You’ve been living with this health challenge, and you know your body, so why aren’t you the master and they the student?

The likelihood that you’ll encounter this situation is most likely to happen if you visit an emergency room where the  doctor on-call is from a specialty other than the one that treats your specific health challenge.  In many cases, specialists who deal with chronic and life-altering diseases practice in groups to help us, the patient’s, avoid this type of situation.  One other place this shift in master and student might occur is if you’re traveling and you’re out of reach of your usual provider.  Don’t be afraid to ask them to contact your own physician (be assertive)…trust me they’ll understand and in many cases they’ll be thankful.

You are the master when it comes to dealings about your own body.  If you pay attention to your physical, emotional, and spiritual barometers you’ll be able to navigate your way assertively to health and healing.

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

Expect the Worst…Hope for the Best

Years ago I was fretting about some college exams and my mother made sure I understood, “You expect the worst, hope for the best and most times it ends up somewhere in the middle.”  I was reflecting on that philosophy this week while going through some of my notes from reading I’ve done in the past couple of months. 

I read, “Dancing at the River’s Edge”.  The book is co-written between a woman with lupus and her doctor (the doctor’s portion much more interesting than the patient’s).  There was a line in the book where a doctor says to the woman, “I can make you better, but I can’t make you well.”

This line resonated with me because it followed the expect the worst…hope for the best mentality.  The idea that once you receive the diagnosis there is always a crack in the cosmic egg.  That one little Achilles heal that even if you recover leaves a spot of vulnerability.  It’s the reason why it’s so important to revel in the joy of health on any level.

The first question to ask yourself then is, “What is better mean?’  It would require you to take an inventory regarding your physical, emotional, and spiritual being and mark that as your baseline…the starting point.  If you were to “get better” what would that look like?  How would you know you’re experiencing “better”?

Understanding your personal health continuum allows you to become more intimate with your life on many levels.  It allows you to tune into your body, mind, and spirit so you’re better able to provide the resources they need to improve your current situation.  Having the ability and the willingness to move up the health continuum propels you on your pilgrimage to health.

Like the line in the book says, you may not be well, but better is an improvement and that leads to hope.  Hope is the foundation for moving along the health continuum.  It fortifies body, mind, and spirit. 

What does better look like to you?  How would you like to work on “getting better”?  Are there things you’d like to commit to so you move in that direction?  I’d love to hear the actions you’re taking to “get better”.

Posted in Caregiving

The Will To Live

Welcome to Caregiver Friday!!

Today I hope to accomplish two things: offer a tribute to my mother-in-law who died last Wednesday 9-8-10, and provide some thoughts about the long-term impact of caregiving and the domino effect of caregiving.

First my tribute:

We all hope for a parent who will provide love and nurturance throughout our days.  Even though we understand mortality cognitively, understanding it emotionally and spiritually is an entirely different ball of wax.  My mother-in-law was a wonderful wife and mother to three (now grown) children, and seven grandchildren.  She was adored in her community as the prominent director of an early childhood education center, and a kind sister to her three siblings. 

Unfortunately my mother-in-law suffered the long-term effects of caregiving.  My father-in-law had a massive stroke after open heart surgery and for the first ten years she took care of him.  The last ten years he was in a nursing home, but she continued to care for him, bring him what he needed, got frustrated when he wasn’t getting the care he deserved and as a result suffered from the biggest fallout from caregiving…depression.

I’ve met way to many caregivers that don’t recognize the signs of depression and therefore don’t get treated.  Depression is a downward spiral and unfortunately she paid the ultimate price…her health.  Knowing the impact caregiving has on the psyche she tried her hardest not to pin that responsibility on her children and unfortunately that decision led to a rapid decline in her health and ultimately her death.  She shouldered the pain of caregiving for her children for as long as possible.  Her three children were by her bed when she died…a true testament to the bond between mother and child.

It’s as if she held on to the pain of caregiving so her children wouldn’t have to live with that overwhelming burden.  As I mentioned in a previous post, not recognizing the impact of caregiving, much to our regret, can have long-term impact on one’s physical, emotional and spiritual health.  There isn’t enough attention paid on the price of caregiving, not matter one’s age it has an impact.  There needs to be more education, more intervention, and more recognition of what is sure to become one of the greatest epidemics of our century.

She will be greatly missed for her love, caring, and compassionate soul. 

The other thing I wanted to address is the notion of one’s will to live.  This is important for caregivers to understand because no matter how you hard you try, sometimes the person you’re caring for still dies.  My mother-in-law had been admitted to the hospital with pneumonia and a fever.  After a couple of days she seemed to improve, and the once again a few days later the fever returned.  The doctor explained to the family that he didn’t believe she would recover from this infection.

At that point, the family decided to shift from treatment to comfort care.  They moved her to a larger room so her son, my partner, could spend 24/7 with her.  Once she had moved to the bigger room I believe she understood the path in front her.  I believe that without treatment, without any hope of recovery she let go and died in a matter of hours.  She’d held on for so many years that I hope letting go was a choice and a relatively easy decision.  I believe that even in an altered state-of-consciousness she had enough soul awareness to understand the path in front of her.  I’m hoping her conscious decision to let go was one more way she could take care of herself.

As caregivers it’s important to understand that we can only control so much.  We can’t live for the other person or want to fight for life for the other person.  We have to give each person we’re caring for the opportunity to make those final decisions for themselves either by letting go and dying or by making sure they have Durable Powers of Attorney for Healthcare so we’re clear about their wishes and decisions.  I wish you strength and peace on your caregiving journey.

Posted in art and healing, creativity and health

The Spoken Word

Welcome to Art and Healing Thursday!!

Thursday you ask?  What happened to Art and Healing Wednesday?  Well the truth is that I like many of you live my life by routine, I guess some might call it auto-pilot.  I’m usually off from work on Wednesday, but my co-worker needed a few days off so I worked yesterday.  When I logged in later in the day I realized my mistake that I hadn’t been mindful of my time and space.  I was just floating through and thought it was just another day.  So I stand corrected and look for Art and Healing next Wednesday…now back to our regularly scheduled programming.

A friend of mine, Kim Rosen, wrote a fabulous book titled, Saved by a Poem.  Kim is an amazing performance poet and an even more provocative workshop leader.  When I was at her book signing in October she said something that made me stop and really focus on the spoken word.  She said that there’s a difference between memorizing something and learning something by heart.  Memorizing is that torturous activity invoked by teachers to get us to enjoy poetry or learn certain facts.  The truth is that memorizing something keeps it in our short-term memory like when we cram for a test, but it doesn’t stay.

The spoken word on the other hand is something that inspires us to go deep within and attach those words to meaning, heart, and soul.  Learning a poem by heart, or a song, or anything spoken/sung means that you attach meaning to it.  It provides you strength, comfort, or a clearer way of expressing ourselves.  There are certain poets whose work I admire and work on learning, but I still need prompts.  It’s an ever evolving process for me, but one that is simultaneously challenging and comforting. 

I watch someone like Kim Rosen and I’m amazed at the number of poems she has learned by heart.  She has a great tickle file in her mind, her heart, and her soul.  She’s able to bring forth the spoken word that fits any given situation.  It provides a container for discussion as well a way to challenge our beliefs or to get us to strengthen our life position.  The spoken word is one more way of utilizing your creativity to support your health and healing practices. 

On your journey to wellness I hope you speak many words from the heart.  The spoken word, no matter the form, is pure and that purity allows for ultimate self-expression.

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

It Hit Me Like a Wave

I grew up in New Jersey not far from the Jersey Shore.  My horoscope sign is Cancer so I’m a big water person; always have been, probably always will be.  I remember playing in the ocean for hours, swimming, bobbing up and down and occasionally being knocked over by a big wave…back then I thought it was fun.

I remember the first time I had to give someone a positive result to their HIV test.  The moment I told them they were HIV+ it’s as if time stood still, the floor under their feet gave way, and they vanished to a far away place.  They got hit by a wave and there was no way to prepare for this kind of news.

It doesn’t get any easier to tell someone they are facing a life-altering illness.  I was diagnosed with an auto-immune disease as a kid so I don’t really remember a time when I wasn’t in doctor’s offices, at the pharmacist, and hoping for the next latest and greatest treatment.  I grew up with my diagnosis.  Those who believe they are healthy and get this news after living their entire lives healthy it’s like a tsunami hit them, and sucked them under the water.

If you speak to surfers they can tell you how best to navigate the waters.  There are always choices to be made such as whether or not to ride the wave,  allow the wave to pass over you, or to be temporarily consumed by the wave.  Each one takes a conscious decision because how you’ll emerge out from under or over the wave depends on this conscious decision.

I’m sure if you’ve met others who have a similar diagnosis or are facing a health challenge; there are those who ride the wave better than others.  I’m sure if I began to break it down there are components of their emotional and spiritual make-up that contributes to this state-of-mind.  Research tells us that clear and thorough information, a good social support system, and an optimistic attitude are contributing factors to successfully riding the wave.

How will you ride the wave?  What will you do to prepare for that wall of water coming at you so that it does the least amount of trauma?  How will you make the necessary decisions so you don’t get knocked over and consumed by the wave?  If you have any ideas to share we’d love to hear from you.