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

How We Live

It seems that we continually talk about how we live which is a good thing because the alternative isn’t very appealing.  However, there is a continuum and that is from birth to death and all the stages in between that create a life.  We haven’t talked much about end of life issues in these postings so that will be coming soon; but today I did want to focus on the act of living, not simply existing.

The ancient Greek philosopher, Socrates, believed that the unexamined life wasn’t worth living.  If we don’t examine our lives is it really a life or merely an existence?  If we don’t look for our contribution to the world and are complacent with the idea that there is a birth certificate with your name on it and some day there will be a death certificate with the same name, then we’re simply existing.

This isn’t about whether or not you have been given a license to abandon all responsibility and take on risks with wild abandon.  It does give you the rights and privileges that come with being born.  It does give you the right and it’s almost as if you’re expected to fill up all the space you’ve been given.  We all have boundaries, but you’d be surprised how many of us don’t expand to our full potential.  For some it’s because it may be too much work, and for others it’s simply apathy.  If it’s apathy then it’s time to light a fire under your rear end.  It’s time you step up to the plate and try and hit the ball out of the park. 

I want to be clear, how you do this is entirely based on your values and your belief system.  It’s based on your dreams and desires utilizing the skills and talents that you were given at birth.  The Motley Fools, two guys who talk about investments have a book titled “Die Broke”.  I’m saying that you should die broke with all the energy, creativity, and opportunity you were given at birth.  The world will be a better place for your zero balance.

Posted in Caregiving

What I Know for Sure…

Welcome to Caregiver Friday!!

Doesn’t the phrase “know for sure” sound nice?  Isn’t it the feeling you want when you are involved in the day-to-day care of someone facing a health challenge?  Surety brings peace of mind.  It gives you a sense of comfort and eases any doubts you may have about your role as a caregiver.  Then we come to a truth that many don’t realize; to know something for sure can only be the result of inner work.  Peaking in to your soul and answering the big questions.  What you know for sure has little to do with factual knowledge and a lot to do with soul knowledge.

When serving as a caregiver/wellness partner you are constantly bombarded with questions in hopes of making sure that you’re doing the caregiving thing correctly.  I’ve seen this to be a bigger factor for women because as natural caregivers there seems to be a bigger stake in getting the caregiving thing right.  If you allow them to, the questions will drive you mad.  They can become your greatest nightmare or your biggest gift…it’s your choice.

Let’s get back to the statement in the title, “What I know for sure.”  The answer to that statement is the foundation for more than just caregiving; it impacts your faith in human nature, your sense of fairness in the world, and your personal identity.  That’s why it’s so important that you take the time to do the inner work required so that every aspect of caregiving becomes an extension of who you are at your core.  It’s not about “becoming” something; it’s about living your truth.

I don’t think we, those outside your household, ask those of you providing care “what you know for sure”.  I’ve heard this type of conversation at memorial services when the caregiver/widow(er) does their own lessons learned sessions and shares that information with others.  My request is that you don’t wait till the person you’re caring for dies.  Take the time to do this inner work and seek your personal truth.  Your truth will emerge when you tell your story, so tell your story in detail and as often as you possible.  It will change your world…”that I know for sure!”

Posted in Having a Voice in Healthcare

Is There a Cut-Off Point?

Healthcare is being debated in Congress and one of the issues on the table is the rationing of healthcare.   People are concerned that treatment they need won’t be available to them because there are parameters that prohibit you from receiving a particular treatment, medication, or even surgery.  NPR had a journalist on discussing this matter and some of the callers brought up some very interesting issues.

One caller L. stated that his father at 87 years old needed a valve replacement.  The family sat with him and discussed the pros and cons of the surgery.  After careful consideration they decided not to proceed with the surgery.  The outcome?  He lived for another two years and didn’t have to spend six months recuperating from a drastic surgery. 

60 Minutes had Ira Byock on discussing these parameters and it brought some interesting issues to light.  One patient age 63 was having lung and kidney failure.  He was going to need a double transplant, but in order to be considered the patient needed to start exercising and eating.  Dr. Byock discussed the possible need for CPR and the patient decided that yes, he wanted to be resuscitated in case his heart stopped.  Is there any quality of life at this point?  I believe that’s the question that is on everyone’s mind; how can you decide what’s enough and when do you stop any treatment allowing the patient to die.

I wrote an entry about informed medical decision-making.  It’s important that each of us has as much information as possible when making these life and death decisions.  Is it fair that the medical community puts conditions on care?  In order for a recovering alcoholic to receive a liver transplant they need to have at least one year of sobriety, that’s a parameter that doesn’t seem to be argued.

During these debates I hope you’re considering your own quality of life and what limits you would put on your own treatment strategies.  These are the times when digging deep can save you a lot of pain and anguish and save your family from making decisions they may not want or be able to make on your behalf.  The other side of the coin is deciding when it’s time to fight for treatment you believe will extend not only the length of your life, but the quality to live that life to the fullest.

Take some time to really consider your wishes as it pertains to end-of-life care.  Think about what you and your family are willing to endure.  The 60 minutes interview talked about how many people live out their last weeks of life in the intensive care unit.  Is that something you would want for yourself or would you prefer to have other plans in place.  Talk to your providers about all the options.  Have a living will or a durable power of attorney for healthcare in place outlining in detail your wishes.

Let your voice be heard during this debate.  Your elected officials are making decisions that may impact not only the type of care you receive but the amount of care you receive.  Should it really be up to them?

Posted in Emotional Health, Spirituality and Health

Strength Training

How strong are you?  If you go to the gym you can measure your strength by using some of the apparatus in the gym.  Aside from muscular strength in your arms and legs you hear trainers talk about core strength; the strength in the torso of the body, abdominal and back.  It’s easy to measure your strength on the physical level but what about measuring your emotional or spiritual strength?  Is it possible to develop a workout program for you mind and spirit?  What would it look like?  How would you know the workout is working?

Developing emotional strength takes practice just as if you were working out your bodies muscles.  You develop your emotional strength by experiencing your emotions and allowing them to unfold in their own time.  When you give yourself the freedom to express yourself fully you give your emotions room to expand and become stronger in how they manifest.  Full emotional expression is freeing, stress reducing, and an authentic way to life your life.  It comes down to willingness.  If you didn’t grow up in an environment where emotions were expressed then this may be a challenge, but it can be learned.  It requires that you place yourself in environments where emotional expression is not only modeled, but encouraged.  This is why support groups are a great model for authentic emotional expression when facing a chronic or life-threatening illness.  Being in an environment where emotions are present or right below the surface gives you a safe place to experiment.  It’s like having your own emotional strength building gym.

Have you ever tried to measure your spiritual stamina?  It’s not like you can start running and see when you get tired, although the concept is similar.  Spiritual stamina requires that you find inner guidance providing you with a sense of faith and hope.  Developing your spiritual stamina is not about dogma; it’s about knowledge of your beliefs, values, and intuition.  Having the capacity to find comfort and peace by going within is building spiritual stamina.  Some may need a personal trainer just like when training the physical body and they turn to spiritual directors to help fortify their spiritual stamina in the face of a health challenge.  Knowing that there are others willing to support your is empowering.  It punctuates the knowledge that you have your own internal and external resources for health and healing.

Remember that developing your emotional and spiritual strength is just as important as developing your physical health when facing a health challenge.  Finding outlets that will support this development is the key.  Learning to ask good questions of yourself and others serves as a catalyst for this type of development.  It’s about coordinating your strength building efforts between the mind, body, and spirit.  Don’t underdevelop one area and over develop others…you’ll live life lopsided.

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

Minimum Daily Requirements

Ever look at the list of vitamins and minerals on the side of any food product in the grocery store?  Do you pay attention to what the minimum daily requirements are and how they impact your life?  Are you conscious of what your body needs in order to function normally?  One of the things to consider is that when facing a health challenge we’re not talking about minimums because the body has to function at full throttle in order to overcome the obstacle.

It’s easy to think about what the minimum daily requirements are for the physical body, but what about our emotional or spiritual being?  What are the minimum basic requirements you need of hope, perseverance, or faith?  It’s easy for our level of hope to be diminished.  Many of us facing a health challenge are way below a sustainable level of hope, what does that do to the immune system?  What happens if you’re starving emotionally or spiritually?  If there is nothing in the well, what are you going to do to quench your thirst?  The word sustainability is used in regard to food and the environment, but what about sustainability in your emotional and spiritual life?

When we’re feeling depleted emotionally and spiritually many begin feeling isolated and depressed.  Even though feeling depressed or sad may be “normal” after a diagnosis, being stuck in the ditch isn’t going to serve you on any level.  How do you keep your head above water?  Gratitude is one place to start.  Being grateful for those in your life who are supporting you will raise your level of hope and comfort.  Empowerment will fortify your mind, body, and soul.  It will raise your level of sustainability going beyond the minimum levels, and experiencing a surge of hope sparking the immune system to rev its engine.

Why do we settle for minimums when we’re at the crossroads to health and healing?  It’s critical to your journey of health and healing that you raise the bar on your expectations of yourself.  Having the capacity to incrementally increase your levels of hope, faith, and perseverance will connect the mind’s message to your body and spirit that it’s time to up the ante and minimums are no longer acceptable.  You are in the driver’s seat and it’s time to set your internal thermostat to a higher level so you’re never depleted and can acquire the resources you need toward health and healing.


Posted in Having a Voice in Healthcare

Decisions Decisions

When diagnosed with a chronic or life-threatening illness not only do you have the shock of the diagnosis, but now you’re required to make all these decisions about your care.  Our age of technology sends most of us running to the internet for information and options and in many cases it helps and in others it increases the confusion.  Do you think it’s possible to discuss with your doctor all the options to come up with a feasible treatment plan?  What if the doctor talked to you and not at you, would that make a difference?  Wouldn’t you rather be a partner in your care than have a plan super-imposed on you like clothing bought off-the-rack?

The only way you, the patient, should be making decisions about your own care is if you’re thoroughly informed.  Making off-the-cuff decisions isn’t good for you and will leave you angry at the medical community.  The internet may provide a foundation of information, but it can’t go through a decision-making process for you so there has to be a better plan.  Becoming an informed patient means having a dialogue with your doctor and coming to an understanding about the pros and cons of each treatment option and how the two of you can tackle this health challenge.

There is a group called “The Foundation for Informed Medical Decision Making” ( that focuses on how patients make decisions and is looking at outcome studies when patients are fully informed about their options.  I’ve spoken in the past about the fact that if you go to a surgeon they are going to want to do surgery, as an example.  Each provider has some stake in the treatment plan because it’s their specialty, it’s what they know, and it’s how they know to solve the problem.

Business week had an article discussing ways to reduce healthcare costs and they shared a scenario from the Spine Center at Dartmouth-Hitchcock Medical Center.  They said, “patients with back problems are show a video that walks them through various procedures and provides data showing that outcomes are similar whether or not they have surgery.  Once the program started, spinal surgery rates dropped 30%.”  A 30% reduction in spinal surgeries, so how does the domino effect apply?  Thirty-percent fewer spinal surgeries means 30% fewer chances for surgical errors that result in medical malpractice suits.  Thirty-percent fewer spinal surgeries means less chance for the patient to acquire a hospital based infection like MRSA or Cdiff.  These are big things to consider.

It doesn’t matter what your diagnosis, informed decision-making is crucial to your well-being.  It will empower you and that in and of itself increase your confidence in the treatment and the provider.  When you feel empowered it increases your level of hope and that’s important for your recovery.  Informed decision-making means that your voice is heard and your place in this world as an individual, not a number is honored!

Posted in Emotional Health

Anchors Away

I’ve only been on small sail boats a couple of times when I was a kid.  As an adult my boat experiences have been on cruise ships, a very different experience.  The thing both types of boats have in common is the anchor.  The anchor keeps the boat stationary, keeps it from drifting with the current, and allows the boat to create a temporary resting place.

When facing a chronic or life-threatening illness an anchor can be viewed in two ways.  First it can be the stabilizing factor that keeps you in place long enough to face the issues at hand.  It prevents you from drifting away from the core issues facing you regarding treatment or symptoms related to your health challenge.  On the other hand, the anchor can be the thing that prevents you from exploring new opportunities.  It’s the piece of the puzzle that keeps you tethered to old ways of thinking.

If you haven’t created a new mind-set following your diagnosis being tethered to the past can be detrimental to your emotional and spiritual stabilizers that guide you on your journey to wellness.  Keeping yourself attached to the fantasy of a life without the current challenge is just that a fantasy.  Being anchored to an illusion is a house of cards waiting to fall. 

Let’s take a look at it from another perspective.  If you’ve made the internal adjustments following your diagnosis then the anchor may be what you need to stay in one place long enough for the benefits of treatment or new information to take hold.  We all need time to assimilate information into our being and the anchor can be that force that keeps you in one place long enough for your to see the results, hopefully the results you desire.

Where am I getting with all of this?  A lot of how we deal with a diagnosis is based on our frame of reference.  The impact is based on the perspective we take about the health challenge and whether or not we feel empowered or helpless.  My hope is that you find ways to shift your perspective to that which is empowering.  An empowered patient is a better partner with the medical team who is working to minimize symptoms and disease progression.  Your frame of reference will also serve as the lens through which all your experience passes.  Developing the capacity to shift your perspective is a step toward optimism and hope; both necessary ingredients for health and healing.

Posted in Caregiving

Your Chief-of-Staff

Welcome to Caregiver Friday!!

Wouldn’t it be great if we all had someone who would give us counsel, look out for our well-being, and protect us from everything in the world?  That’s exactly what the President has in his Chief-of-Staff.  I was thinking about how this interprets into real life after watching a rerun of The West Wing.  In the episode, the President is off to give the State of the Union address.  As is customary, a member of the cabinet is left behind in case of Armageddon and the Capitol building is destroyed killing all the government officials in the building.  The cabinet member selected to remain out of the capitol was the Secretary of Agriculture.

As the President is leaving for the speech he says to the Secretary, do you have a best friend?  Is he/she smarter than you?  Would this person lay down their life for you?  That’s your chief-of-staff.  How about that, three simple questions to determine who that person would be in your life.

Translate that to your life as a caregiver/wellness partner.  We need advisors because we’re emotionally connected to the outcome of any decision.  We have a skewed view of the world and about its fairness.  There are lots of opportunities for you to make life more difficult than it needs to be and having someone who can tell you the caring truth is a lifesaver. 

Having a community is critical in our culture.  We are social creatures and isolation is bad for your physical, emotional, and spiritual well-being.  Experiencing support, love, and protection from another human being who can be objective will help give you perspective about your own life and about the decisions you have to make as a caregiver/wellness partner.

It doesn’t matter what your personal issues are as a caregiver; creating the capacity to look at the big picture is important.  Utilizing your “chief-of-staff” as a sounding board gives you time to weigh options, gather information, and make informed decisions.  Recruit your own chief-of-staff and see how it may improve your quality of life…it’s a win-win situation.

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

When Will It End?

As I wrote the title for this article it made me think about how many ways it can be interpreted.  I guess the truth is that it all depends on what’s going on in your life at any particular time.  I believe it’s a question we all ask ourselves at one point in our lives; maybe a bit more when we’re facing a chronic or life-threatening illness.

The responses that immediately come to mind for those facing a health challenge are; the treatments, the pain, the fatigue, the isolation, and a host of other options.  I guess if we flip the question around there’s always another perspective for us to explore and that question is, “Why would we ever want it to end?”

I guess you’re wondering what the “it” could be when facing a health challenge.  I know not everyone feels this way but many feel that their health challenge was/is a gift.  Whether or not you believe that to be true, the never-ending aspects of a health challenge may be closer ties to family and friends, a better knowledge and acceptance of your own body, a heightened or re-engaged spiritual life.

It doesn’t matter which road or question you choose because your journey is unique.  There isn’t anyone who will experience this journey the same way so the answer to the question is at your own discretion.  I would ask that you ask yourself one of the two questions I posed and see where it leads you.  Give yourself the freedom to see if there is a point in time when the question flips from one to the other and possibly back to the original.

It’s all about your story and don’t let anyone ever rob you of your story.  Your story is the foundation of your healing process and it can give you clues that will aid in your journey of health and healing.

Posted in Spirituality and Health

Forces Greater Than Us!

Ever stand at the edge of a large expanse and yell at the top of your lungs waiting for the echo?  It’s amazing how often in pop culture, television, movies, music, etc, we get the echo of what’s happening to many of us at the same exact time.  Tropical storm Ida is causing quite a disturbance in the gulf and there’s nothing we can do about it.  We can’t change the course of the storm, we can’t move the country out of harm’s way, and we can’t force people to take appropriate measures to insure their own safety.

In the United States we suffered a tremendous last week at Ft. Hood when a member of the military opened fire amongst a crowded room of unarmed service personnel and civilians.  While this was happening an angry employ entered his previous place of employment, opened fire killing one and injuring five employees.  Once again in these cases there is a powerlessness felt because some force whether it be created by nature or man himself sets something in motion and unfortunately we’re right in the path of the turbulence.

Why am I bringing this up in a forum that discusses illness?  You can’t elude an illness.  It doesn’t put a GPS locator on you and hunts you down, it happens.  The unfortunate part for those of us diagnosed with a chronic or life-threatening illness is that we can’t get out of harms way once the disease is set in motion.  We can begin treatment, but that’s like brining FEMA trailers in after the storm has hit.  Avoidance may be a coping mechanism for emotional issues, but when it comes to physical health avoidance can be fatal.

No matter how powerful we think we are there are still forces greater than us.  It would be great if we could overcome every obstacle but we can’t.  Doctors can’t heal every disease, clergy can’t heal every spiritual hurt, and mental health professionals can’t heal every disorder/life malady.  Does that mean we’re powerless?  Certainly not, it means we have to get better at using the available resources we have at our disposal.  We have to enlist the support of every opportunity, person, and invention/creation that could serve us on our journey to health and healing.  Yes there are forces greater than us, be we are a greater force than some…let’s make sure we know it and use that knowledge.