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

Everything Changes

The change of season has happened on the calendar and depending on where you live in the world, the temperature may be changing as well.  It’s during this time of year that everything is in flux.  One day it can be hot and the next cold, one day it can be clear and the next snow on the ground.  No matter how hard we want the status quo it’s not in our control and I know for me that’s difficult.  We had hot weather and then one day it dropped thirty degrees.  I decided in that moment I was moving to a warmer climate.  I like things to be predictable, but I didn’t create the world and I can’t control everything around me.

This is one of those surrender moments.  When diagnosed with a health challenge things shift, and not always on schedule.  No matter how much we would like to control every outcome; we have to simply remain flexible enough that we can make the necessary adjustments on the journey to wellness.  If we don’t allow for the changes and we remain rigid in body, mind and spirit, we’re in for rough times and that works against the bodies natural healing abilities.

How can you ease the shifts that take place in your life? As you recognize that change is imminent, how will you prepare for each shift that presents itself to you?  Remember that shifts are not always for the worse; they can be related to healing and that in and of itself can be a shock.  We don’t like the word change and yet once diagnosed with a chronic or life-threatening illness, change becomes the norm not the anomaly. 

Because change can happen at any time it’s good to continue adding tools to your health and healing toolbox.  Finding ways to be more open, more loving, less critical or judgmental will take you far on your journey.  Establishing rituals for improving the mind-body connection will bring peace in times of struggle.  Creating celebration rituals when things change for the better is equally important because you must celebrate each and every success.

Mother nature takes charge of the change in the seasons and you can be the master and commander of your reactions to change in your own life!

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

Holiest Day of the Year

Today is Yom Kippur, the holiest day of the Jewish Calendar.  It’s the day that your fate for the coming year is sealed.  I’ll make this brief since the day is to be filled with thoughts about healing, repentance, and remembrance.  I know that religions all have holy days, but in the true spirit of the life we’ve all been given; isn’t every day a holy day.

Following the diagnosis of an illness wouldn’t it make sense that every day is considered holy?  Wouldn’t it make sense to make amends all along the say, not just at appointed times of the calendar year?  When you wake up in the morning isn’t that the miracle of the day?  Obviously if you can live any day without pain or suffering (physical, emotional or spiritual) you’ve hit the jackpot.

On this, the holiest day of the Jewish year I wish you peace, health, and happiness in the coming year.  I hope to be able to spend this time with you next year.  Peace!

Posted in Caregiving

The Evolutionary You

Welcome to Caregiver Friday!!

I’m continuously riddled with questions about our own personal evolution.  Studying human behavior for more than twenty years and watching my own evolutionary path has led me to want to expand this question to those around me.  We all evolve.  I’m not talking about physical evolution like going from apes to human, but an emotional and spiritual revolution (physical evolution does take place evidenced by the increase in life expectancy). 

I wish we could have taken a snapshot of your life outer and inner life at the time of the diagnosis for your loved one because the shifts or changes would be fascinating.  As time goes by what have you let go of that you thought at one time was important?  How have your belief systems changed?  What are you political views compared to the point of diagnosis, especially with debates about healthcare reform?  What has changed, if anything, regarding your religion or spiritual practices?  I bring these up because the shifts may be subtle but I believe they are very much happening on an ongoing basis.

So here’s the big question…Do you like the evolutionary you?  I ask because when I imply that we’ve all changed it doesn’t mean we always change for the better.  I’ve met many caregivers/wellness partners over the years who have become more cynical in their nature (unlike me who has been cynical most if not all of my life).  Perhaps you’re living a life with greater continual stress and it leaks out in your interpersonal relationships.  Looking in the mirror to see the evolutionary you and thinking back to the point of diagnosis is an eye opener.

I’m an artist and every so often I actually look at the evolution of my work. If I  look at the work I did five or six years ago I find it to be primitive.  The work I’m creating now how a better sense of finesse.  It’s more polished and that comes from practice.  The same is true with caregiving; what may have started as a challenge has now become second nature.  Questions you asked yourself about your ability to take on the caregiver role or juggling multiple tasks, errands, and life circumstances at once, you don’t give a second thought.  The ability and willingness to share yourself in a more vulnerable way as a result of caregiving has changed your relationships across the board.  How are you perceived now and how are you knowing that about yourself?

You will continue to evolve because the Universe wouldn’t have it any other way.  If you can’t think back to the point of diagnosis for comparison start today.  Take that snapshot and if you’re still in the caregiving/wellness partner role in a year look back and see your evolution.  We all need a starting point for reflection and growth!

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

It is the Best of Times…It is the Worst of Times

I can’t believe that this is the 400th post on the Pilgrim Pathway/Surviving Strong blog.  It’s an honor to write for you as we create a community all focusing on one thing, health and healing.

In the title I modified the line from Charles Dickens.  We live in a world filled with dualities.  Every day we are confronted with the good and the bad, the light and the dark, and optimism vs. pessimism.  This isn’t about believing the glass is half full or half empty.  This is about getting you to experience your journey on a deeper level.  It’s this moment that you’re being called to connect the mind, body, and spirit to tackle the state of the world and how that translates to your state of health.

It’s easy to believe that what goes on around us has nothing to do with what goes on within us.  As charming as that might sound it’s not true.  We’re constantly influenced by the media, our friends, and even the church/synagogue/mosque bulletin.  The news comes at you faster than a tidal wave and you’re expected to make sense out of it all.  These are the times for you to rely on your inner guidance.  Those stories, beliefs and values that carry you through these times, both good and bad, and provide you with the clarity you need to continue your journey.

Scientific discoveries, healthcare reform, stress levels, organic food, alternative therapies, these are just some of the good and the bad you have before you.  Taking the time to applaud those that serve you and eliminate those that don’t is your goal.  Finding those sacred places to experience quiet will give you the spiritual stamina you need to continue pursuing and cherishing the journey to health and healing. 

How do you view these times?  Are you building better relationships with friends, family and even your medical provider?  Do you give yourself the time and space to explore your part in the big questions asked by the Universe and humanity?  What’s the one thing you can do today that will bring you a bit of added peace?  When you experience peace, the Universe experiences peace.  Be a peace broker.  Be an ambassador for the mind-body connection.  Be a conduit for the awakening.

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

Medical Record Transparency

Ever since the economic collapse last year the word that has been thrown around is transparency.  People want to know what’s really going on and how it will impact them.  Transparency is not exclusive to the financial community, the medical community has increased its discussions about transparency thanks to patient advocacy groups.  Medical records have been the source of tremendous tension between doctors and patients because of the secrecy of the record.  As discussion increases about healthcare reform, the conversation about opening medical records is ever increasing.

Many healthcare providers and hospitals are going to electronic medical records.  This is both environmentally sounds, and more efficient for the providers, but what goes in your medical record?  We know that your vital statistics, lab reports and most importantly your doctor’s evaluation is part of the record…so why is it so secret?  As a patient I like to know what my doctor is thinking.  Jerome Groopman’s book, How Doctor’s Think allows patients to understand the doctor’s process for arriving at diagnoses and treatment plans.  As a patient, if I’m able to understand how my doctor thinks then I believe we could partner better and increase my level of health and healing.

Making it difficult to get hold of your medical record is frustrating.  Providers have used various discouraging tactics to deter people from requesting their records and that’s wrong.  Dome medical providers believe that giving patients access to their own medical records will increase lawsuits, but research shows otherwise.  Personally I know that having access to your medical record is crucial because mistakes happen.  I was visiting my dermatologist and as the medical assistant was reviewing my record I happened to see that my record showed that I had been diagnosed with skin cancer…NOT TRUE.  I asked her about removing this from my record and I was told that it couldn’t be removed, it was a permanent part of the record.  Needless to say when my doctor entered the room I once again brought this incorrect diagnosis to his attention.  He removed it from the record.  If I hadn’t seen my medical record I’d have this false diagnosis and it would follow me around the rest of my life.

Why is this important?  If you’re applying for disability insurance, long-term care insurance, life insurance or another health insurance program this kind of information would raise your rates if the company even extended you a policy (That might change with healthcare reform).  More importantly, having information that is wrong skews the future of your own healthcare.  Doctors who believe the wrong medical record will follow that sequence of thinking when treating you.

Having access to your record will improve the relationship you have with your doctor.  It does two things, puts in a checks and balance system, and makes the doctor become more mindful of what they put in the record.  Knowing what’s in your medical record is crucial to the future of your  health and well-being.

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

The Climb May be More Important than Reaching the Summit

Everyone has their own Everest.  Prior to being diagnosed with a chronic or life-threatening illness it may have been money, work, status, or family obligations.  The goals you set were based on the rules and expectations of your tribe.  You were a part of a collective that set parameters for being happy.

When you received the news of your diagnosis things changed.  Your priorities shifted, your world view had to be refocused, and your life trajectory took a direction.  When exploring your new life trajectory, health and healing are in the foreground of your vision.  Once the shock of the health challenge diminishes, you become capable of finding new opportunities as you climb your new Everest. 

The climb to the summit when facing a health challenge is no different from any other climb, but the stakes are higher.  It’s no longer about how you are seen by others, but how you see your inner self and how that projects out for the world to witness.  It’s true that the climb can be exhausting, frustrating, and confusing but it’s not a race; it’s a paradigm shift.  Having the capacity to make healthier decisions on the physical, emotional, and spiritual arenas of your life will provide you with great options and more generalizable tools for reinventing your life.

Your new Everest is able to be scaled.  Taking each leg of your journey with mindful steps will enable you to pace yourself as you head to the summit of health and healing.

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

Want to Play Twenty Questions?

In case you hadn’t noticed, we live in a consumer run culture.  We go  to great lengths to find the latest and greatest products and services that will make our lives better, more interesting, and full of beauty.  When’s the last time you went to buy a car, a large appliance, or big screen television?  The amount of time spent researching the product, test driving the car, getting the information from consumer reports and standing in stores watching screens, listening to speakers, and laying on mattresses in front of the world.  We ask questions as if we were going to marry the sales person, make a life long commitment to the product, or use the process as a measure of our self-worth.

So I have question for you?  Why aren’t you asking your medical team the same number of questions?  How is it possible that the moment you walk in the exam room you begin suffering from amnesia?  Things that were crucially important become an after thought, and discomfort and symptoms are not so bad or at most tolerable.  What if you asked your medical team, that includes pharmacists, the same number of questions you ask the car salesman? 

Isn’t your health worth the scrutiny of your medical team?  Are you less intimidated asking about mpgs’ than you are about nausea?  I could suggest that you begin thinking about your health challenge the way you think about a car, but that would probably be insulting.  To prevent me from doing this I hope you’ll begin giving your health and the journey to wellness the same energy you do to buying a large ticket purchase.  Can you think of anything more precious than your own life?  What lengths will you go to making your health a priority and making everyone aware of your priorities?  Are you ready to play twenty questions with your providers?  If not, then I hope you’ll refrain from buying a car, big screen tv, or kitchen appliance until you’re able to take the tenacity you have in buying these products and apply them to your health.  Let me know how it goes!

Posted in Caregiving

When You Care Enough to Send the Very Best

Welcome to Caregiver Friday!!

I spend a lot of time at the Hallmark store because I like sending cards.  I find myself in card/stationary shops everywhere I go looking for just the right card to say just the right thing.  Is there a perfect card?  No.  Are there cards that come close?  Maybe.  The truth is that cards are created for the masses.  They have to have mass appeal so they are generalized and it takes a lot of practice and research to determine what will attract the masses.

Why am I writing about cards?  I’m really not, I am wanting us to consider why we send cards, fruit baskets, and/or flowers to someone who is feeling well.  We want to ease their pain, make them feel loved, and pretty or delicious is one way to do it.  Overwhelmingly when you talk to people about what is the best medicine they will respond that a visit (if they’re up to it) is the very best anyone can send when facing a health challenge.  Knowing deep in your heart that there are people who are willing to look out for you, concerned for your well being, and want to partner with them on their journey is the greatest gift any of us can give.

Nothing substitutes for person-t0-person contact.  The question is are we as caregivers/wellness partners/loved ones afraid of the illness?  We have to remember that we’re not visiting the illness, but the person facing the health challenge.  No matter the physical, the emotional and spiritual parts of the person are whole and in need of attention.  How will you send your very best emotional and spiritual connections to those you love? 

Sending your very best is easy because it’s sharing the authentic you.  It’s sharing your time with someone who has etched their name and their essence in your heart.  Sending your best requires very little other than you being you…that should be easy so let’s share ourselves and let that be the gift of healing we offer to those we love.

Posted in Caregiving

Healthcare Reform?

Welcome to Caregiver Friday!!!

The month of August has been crazy for the politicians as they reported back to their home districts touting the new healthcare plan.  They’ve been holding town meetings that have been anything but calm, in fact they’ve been down right chaotic.  It seems constituents believe that whoever yells the loudest will be heard.  Unfortunately, when people are coming from a place of emotion all logic gets thrown out the window and the message gets lost.

I get that the healthcare reform has to include everyone.  I also get that by providing the consumer with choices we may in fact curb costs because competition may get insurance companies to come up with new strategies for attracting and retaining consumers.  Are you noticing anything in all this talk about consumers?  They plans seem to be focused on the patient.   What about the caregiver?  Don’t our representatives understand that we’re not only talking about the cost to the insurers and the insured, but what about the cost of caregiving to corporations and employees who are paying big tax dollars into the federal government?  Who do they think is going to pay for healthcare reform if they aren’t going to add to the deficit or add taxes?  You, the caregiver, are carrying the cost with your tax dollars.

It’s time that we look at the needs of the patients/consumers with one big caveat, how does the caregiver fit into the equation?  I don’t usually get political in my sharings, but I couldn’t simply let the matter go without chiming in during such a critical time in our policy formation and social/moral obligations as human beings.  My hope is that you will look carefully as to how healthcare reform will impact your life as a caregiver.  We know it will reduce some stress such as financial stress if everyone is covered, but what about the emotional and spiritual impact of reform.

Please let your voice be heard.  It doesn’t matter where you fall on the continuum of the debate, just stand up, be heard, and participate.  Caregivers participate in the health and healing of their loved one, now it’s time to expand the scope of your participation.

Posted in Caregiving

Caregivers Overcoming Adversity

Welcome to Caregiver Friday!!!

Every time I read a story about a caregiver who takes on the healthcare system all I can do is think of Sally Field in the movie, Norma Rae.  It takes a lot of courage, perseverance, and resilience to be able to take a bad situation and go on to do something miraculous.  Yesterday I talked about the problems hospitals are having in regard to medical errors and the safeguards that are being installed to save lives.

The group Mothers Against Medical Errors (MAME) is what happens when someone takes their own tragedy and say, “NO MORE”.  It would be ideal if groups like MAME didn’t need to be started but they do and there are people who are willing their stories, not only on how to avoid the tragedy, but if it happens how to cope.

I know, if you’re a caregiver, you’re saying to yourself, “Oh my God, I have one more thing to worry about”.  The truth is that when it comes to your loved one in the hospital you’re already on high alert and you’re already conscious of what’s happening to the one you love.  This is where the twist comes in; you have to be willing to make your voice heard.

I guess the best representation of this is Shirley MacLaine’s role in Terms of Endearment.  She made her voice heart, in fact she made her voice heard throughout the universe.  The truth is that when you don’t get the response you feel is appropriate, you have to escalate.  There are times that the escalation brings attention to your situation.  Yes, you may get labeled as being histrionic, crazy, or unreasonable, but I believe you can deal with that once the person you’re caring for is out of the hospital.

Businesses have lessons learned meetings all the time so they don’t keep making the same mistakes over and over.  Why don’t doctors do that with patients and caregivers.  Stop being anonymous, be heard, and who knows you could be the one who saves the life of your loved one!