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

Anxiety, Angst, and Apprehension

I have a confession to make.  Even with all my years of patient empowerment work I hate when I have to confront a medical/dental professional.  I get the entire conversation written in my head like a bad Broadway play, full of villains, twists and turns, and someone coming out of it worse off than when they started…usually me.

I had some dental work done a couple of weeks ago and 24 hours after the work I noticed that it didn’t feel good.  I had some pain and the right side of my mouth that was never sensitive before was not sensitive to hot and cold.  Of course as timing would have it the office had closed for vacation so I had 10 days to have this mess swirling around n my brain.

My biggest obstacle, and maybe you can understand, was the shift that takes place from everything being okay to being less than perfect.  I felt like the dentist had let me down, not that she didn’t anything wrong professionally ( at least not to my knowledge).  Thee was definitely a sense of dread that I felt as I picked up the phone to call the office the first morning they were open for business.

I asked the receptionist to speak with the doctor.  She asked what was wrong and knowing the work I had done speculated (scary when the receptionist speculates), but I figured if she was going to get me to the doctor she could speculate to her heart’s content.  Fortunately, she got me in yesterday afternoon.

The dental hygenist asked me what the problem was so I told her.  My next words were the most telling.  In a discouraged tone I asked, “Please make it better”.  The dentist came in and told me what she felt the problem might be and proceed to make the necessary adjustments. 

So what about the sensitivity to hot and cold?  The dentist told me that she had some work done and that her teeth became sensitive to hot and cold and it resolved itself over time…it took a year.  Now I’m once again in the dread space but we’ll take it one day at a time.  I must have the same procedure done on the other three quadrants of my mouth.  Better wait or I’ll never be able to eat again.

I know you’ve been waiting for the moral of the story so here it is:  It’s natural to feel apprehensive when needing to confront a medical professional.  We’ve elevated the doctors on extremely high pedestals and all we have to go on is our bodily experience.  Here’s the important point.  Your bodily, emotional, and spiritual experience is all that matters.  If there’s a problem it’s up to the medical professional to fix it.  This gets back into the need for doctors and dentists to do a better job of informing their patients about results of procedures.  If the dentist had told me what might happen at least I wouldn’t have freaked out and had 10 days to stew in my own juices.  The partnership has got to get better.

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

Lessons From Bhutan

It’s amazing to think of the number of countries in this world that adhere to their roots.  They maintain practices for centuries and whether due to choice or circumstance modernize but don’t abandon what anchors them in their beliefs and customs.

There’s a book that was turned into a television show called A 1000 places to see, and one episode was a trip to Nepal and Bhutan.  So what’s so important about Bhutan and what lessons can we learn?  It seems that Bhutan’s culture is built around equity and empathy.  They understand that the well-being of the country is dependent on the well-being of the people.

They took the travelers to a “typical” Bhutanese home and it’s astounding to see the interior of the home.  They have a common room used for cooking, living, and sleeping and then they have a room dedicated to prayer.  They have a room dedicated to prayer making Buddhism an integral part of their lives, not an after thought or a “should”.  If you look at the research on spirituality and health there is a connection between well-being and spirituality.  If you’ve been diagnosed with a chronic or life-altering illness  how could spirituality impact your daily life.

I’m not recommending that all of us with a health challenge move to monasteries or sit on mountain tops, but what about mindfulness?  How would your healing journey be propelled forward if you had a connection to something bigger than you?  How much comfort would you receive having a connection to the Universe?

I guess I’m wondering how much spirituality plays into the quality of life for the Bhutanese people.  It is a culture where the government measures Gross Domestic Happiness.  I’m not kidding, they measure the degree that the people in the country are happy.  Don’t you think that impacts the health of the nation?  What if you measured your level of happiness, where do you think you’d fall on the happiness meter?  What could you do to increase your level of happiness?

Is newer always better?  Technology and scientific advancement has certainly made living with a chronic or life-altering illness easier.  Science has made dramatic changes not only in the longevity of those living with a health challenge, but has improved the quality of life for those of you facing those challenges.  However, we have basic needs to meet our emotional and spiritual needs and maybe practiced rooted in ancient traditions are just as potent for the mind and soul as any science and medicine can be for the body.

Posted in Caregiving

If Meredith Grey Said It, It Must Be True

Welcome to Caregiver Friday!!

One of the things about television shows in syndication is the clips they show reminding you of those special moments.  I saw a clip from an old Grey’s Anatomy where Meredith, played by Ellen Pompeo, is standing on a vacant piece of land with a floor plan of house lit with candles.  Meredith turns to Derek (McDreamy) and says, “Let’s be extraordinary together instead of being ordinary separately”.  That’s an incredible statement to make in any relationship, but apply that to your relationship with the person you love who is facing a health challenge, see the power?

There is a synergistic energy that takes place in relationships.  It’s the exponential power that comes with love, memories, and compassion.  What can you accomplish together, as a couple?  How does your relationship create a united front on the path to health and healing?

I believe that being extraordinary together refers to so many levels of a relationship.  It’s about being able to tell someone you care about your biggest fears. It means that the person you’re caring for can be honest without being judged.  Each of you has a safe haven in the heart of the other…that’s extraordinary.

The problem in many relationships where a health challenge is present is the amnesia of the connection between the two of you.  There isn’t a lot of research on relationships where one person has a health challenge and the other is serving as a caregiver.  There are patient studies and caregiver studies, but what about the third party…the relationship.

The relationship is an energy force.  It has a life all its own.  The relationship is not only the ties that bind you together, but a life force you created with the other person.  It’s something that evolved over time and doesn’t diminish simply because an illness is present.  It does afford you the opportunity to make better decisions about how to care for the relationship.

What would make the relationship you have with the person your caring for extraordinary?  Are there snippets from your own past with this other person that made you feel larger than life?  How can you capitalize on those opportunities and memories to carry each of you forward on your own paths to health and healing.  You each have your own journey to wellness and at points along the path you come together and walk together.  During those moments on the same path you become extraordinary.  Take in those moments and experience them fully.  Experience your magnificence!

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

What Would Your Tattoo Say?

What?  A tattoo?  Have you gone mad?  I can hear you thinking those thoughts, maybe even gasping out loud at the thought of getting a tattoo, but do you know what I’m referring to?  The advertising age has brought us to the brink of slogans and tag lines.  They have made these phrases part of our everyday vernacular and to top it all off, we use these sayings on a regular basis.

Why would someone with a chronic or life-altering illness get a tattoo?  I’m not expecting you to really get a tattoo, but I am wondering what phrase, thought, or belief you hold as your motto.  Think of the following phrases and see how they reflect on your own thoughts related to your current health status: “In it to win it”; “Bring it on”; “Knowledge is Power and Hope is everything”; “fighting on ever front”.  These are all-powerful sayings and they catch your attention.  Do any or all of them ring a bell for you?

Why do we create these phrases and slogans?  Because they allow us in simple terms create a sense of purpose and active participation in our treatment.  They create a mantra that we can say to ourselves over and over to remind ourselves that the next moment in time will be better.  They give us a foundation upon which we build our personal life platforms.  These words help provide meaning to the senseless experience of a chronic or life-altering illness.

The sayings are all positive thoughts.  They provide each person with the catalyst to move forward toward an increased sense of control of their lives and steps toward improving quality of life.  They are simple to remember, catchy, and can spread like wildfire so you can recruit people to support you with a simple phrase.  It’s what unites people, your support team, to move toward health and healing.

What’s your motto?  How does it help you cope with your current health status?  What words of wisdom do you have that you’d like to shout from the rooftops?  Think of this as your rooftop and let us in on the words you’d tattoo to instill hope!

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

Breaking Mental Habits for Health and Healing

We all do it.  We get into a groove and we continue down the same path over and over because we know it and it feels comfortable.  What’s the it?  The it is everything and anything we think, feel, and do in our lives.  We learn how to do something and it becomes a habit.  Our responses to events and experiences become a habit.  How we resolve challenges becomes a habit.  All these habits keep you in an insulated zone that explodes following the diagnosis of a chronic or life-altering illness.

The trouble is that once the doctor delivers the diagnosis how long do you have to reconvene your inner committee to begin changing your old habits?  The funny thing about habits is that the experts say it takes thirty days to develop a new habit; that’s the good news.  The bad news is that for many of you it takes this devastating news to initiate the thirty-day new habit regimen.

Why do you need new habits? The biggest challenge many who are confronted with a health challenge face is their own thought patterns.  We’ve been conditioned, in our industrialized western culture, to believe we are entitled to good health and long life.  Did you know that at the turn of the twentieth century the life expectancy was 47 years of age?  We’ve come a long way baby, but not in our thinking, simply our technology and scientific advances.

We’ve begun to see a thought revolution evidenced by the number of people who have turned to exercise or spiritual practice, but the negative thought patterns are difficult to combat given the economic crisis, the housing crisis, the healthcare crisis, etc… you get the picture.  That’s why it’s so important for you to begin your new mental habit today because a change in your mental habits will result in a change in your body’s ability to fight disease.

It has been proven time and time again that the mind-body connection is powerful.  Developing mental habits of gratitude helps instill a sense of hope that tomorrow can or will be better.  Developing a sense of presence negates what might happen tomorrow or what happened yesterday because now is all that matters.  These habits aren’t easy and often they require someone who can serve as a guide along the way.

Over the past twenty years I’ve been privileged to serve as a Sherpa for those facing a chronic or life-altering illness.  I evolved into this role because those who came before shouldered the burden while I gathered new strength, developed new coping mechanisms allowing me the time I needed to breathe and adjust to the “new normal” of my life.  Having someone who will carry the burden on the emotional and spiritual level affords you the opportunity to expand your personal potential.  It will give you the freedom to explore what works for you to change your mental habits and revitalize the vision of you life.

You owe it to yourself to develop these new mental habits following your diagnosis.  Finding ways to expand your world of possibility will ignite your immune system because it too needs to experience hope.

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

Before and After

There is a threshold that you cross when you’re diagnosed with a chronic or life-altering illness.  It is a threshold no one wants to cross but as the population lives longer, environmental impact changes the air and water we breathe and drink, and the natural course of nature, there is an increase in the number of people who will be diagnosed.  Like any other major event in your life you probably think you’re the same person after as you were before the diagnosis.  It’s an interesting point, but it may not be true.

In order to k now where you are you have to know where you came from.  Geneaology has become an increasing important activity for many adults, do you know why?  Because our history informs the course of our lives.  It’s not a matter of predestiny, but your ancestors set the tone for who you would become.  How does this apply to your life with a health challenge?

Exploring where you come from means looking at how your ancestors survived the stresses of everyday life.  It means learning hard and painful facts that show that you and your ancestors are not newcomers to strife, angst, and despair, but found ways to make meaning of the challenges and overcome hardship.

This knowledge can be the foundation of your own resiliency plan.  Of course there are exceptions to every rule, but even finding out what life was like for those a generation or two before you can have healing powers of its own.  In my family there are members who had the same auto-immune disease I have and knowing that I can see how they lived their lives prior to medical advances I have the benefit of today.  Were we heartier stock back in the day?  I don’t think so, what I do know is that our ancestors were better at re-inventing themselves as a result of their challenges. 

Where do you come from?  How does it color your view of the world and of your health challenge?  Are there any secrets to surviving and thriving you’ve picked up by finding out about your ancestors?  Let us know so we can share our knowledge, wisdom, and hope.

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

Making Decisions

Why is it that some people are seen as being good decision makers?  What qualities do they possess that earns them this title?  Can anyone be a good decision maker?  Would it benefit you following your diagnosis to become a good decision maker?

We could spend hours, days, months, probably even years discussing the biology of decision-making.  Leave it to say that a lot of it is done in the prefrontal cortex.  The thing that Jonah Lehrer points out in his book How We Decide ,  is that it’s the information in the brain cells coupled with our emotions.  Seems like a fairly straight forward explanation, the trouble is what happens when you’re overwrought with emotion or are too cut off from your emotions?

This is where achieving a level of balance is important in making decisions.  When you’ve had enough life experience you may hear yourself saying that you know intuitively what decision to make.  That’s probably true in most life decision-making moments because you’ve had plenty of practice and practice leads us to learning all the moves.  Our capacity for learning is important in decision-making. 

The problem arises following a diagnosis of a chronic or life-altering illness because it’s entirely new to our experience.  Most people don’t have a data bank of information to rely on regarding the decisions made regarding their previous diagnosis.  That means one thing, a steep learning curve and mistakes.

One way to gain the information you need without having to have lived the experience is to hear the stories of others.  Support groups and autobiographies written by famous people who have overcome adversity, particularly as it applies to health and healing is a huge wealth of information.  If you are willing to put in the time and the patience to absorb all the information, you’re decision-making skills will be greatly enhanced.

You have a great opportunity to become a better decision maker following your diagnosis.  Learn how to incorporate all the tools to increase your energy and to make your journey to wellness an easier process.