Posted in Having a Voice, Personal Conviction

Why A Pilgrimage

People have gone on pilgrimages for hundreds if not thousands of years.  Many pilgrims were those with a life-altering diagnosis hoping for a miracle.  If the person were too sick to make the journey and they have the means they would hire someone to walk the pilgrimage for them as a surrogate and then make their way to the pilgrimage site to attain the healing words.

Today’s pilgrimages are often different.  They are the journey not of hundreds of walking miles, but many miles below the surface of our psyche.  It is the determination to keep moving forward believing there is always one more thing that can be done, even if that one thing is pain control.  It’s the commitment to making your voice heard so that hopefully within your lifetime researchers will be closer to developing tests and treatment that become patient specific.

 Think about the news for screening men for prostate cancer.  The new bio-research is developing the technology that will be able to evaluate for certain proteins or other markers making diagnosis more accurate and the need for unnecessary biopsies will disappear.  These are incredible times and it’s fueled by those of us who continue talking to our medical personnel, the researchers, our politicians and our foundations to keep them on the path of this journey.  Being part of monumental change can be daunting, but thinking of the internal boost your soul will receive knowing you’ve been part of creating “personal medicine”. 

Think about how good it will feel if you get to be the recipient of the technology or research that you stood up to have completed.  You make history and that’s priceless.

Posted in Anonymity, Community, Having a Voice

Alone But Not Forgotten

Day in and day out we hear about the big name illnesses.  Those are the life-altering illnesses that receive celebrity endorsements, create foundations, have huge money for research and a community so people don’t feel alone.  What about those illnesses that don’t fall in that category.  This week I watched “Extreme Makeover: Home Edition” featuring a young girl who has an illness that only 25 people in the world have…can you imagine.

During the show, they brought in another child who had the same diagnosis and the bond was immediate.  The relief each of these children felt was palpable.  Feeling like you come from another planet does not aid in creating the fighting attitude to conquer the challenges of a life-altering diagnosis.  It’s when we can say to someone, “This is how I’m feeling” and they can respond honestly “I know how you feel” that we feel understood.

Maybe one of the best things we can do it when we encounter someone with someone with an orphan illness, simply give them the space to share their experience.  This isn’t about solving anything, but giving them the platform to be seen and heard.  It’s a great time to give these individuals and families the opportunity to step out of the shadows.

Illness is lonely enough, and as a pilgrim walking this path can be daunting.  Fortunately, many people with these diagnoses have doctors that can be their Sherpa on this path.  These doctors are often doing research to gain information and in turn create treatment strategies.  We all can use a Sherpa to help us on what is often a long and arduous journey.  Who’s your Sherpa?

Posted in Self-Nurture

How Available Are You?

Many of us who are caretakers on this planet are taxed even more when confronting a life-altering illness.  For the first time in years, maybe ever, your personal health can concern for self must come first.  If you’ve been the one who everyone calls for advice or the person that everyone calls to volunteer for some activity how will that change.

The key is not only self-preservation but participating in your own healing and hopefully a cure.  In our age of technology we’re by nature very connected.  It’s been a long time since it took weeks to get messages from one person to another.  Technology allows us to reach another person in second and no matter where they are located.  With mobile technology you’re never far from a phone or e-mail.  Latest technology will allow you to access Internet while flying in a plane.  How accessible do we need to be?

When walking this world as a pilgrim, caring for your own health and well-being it’s important that you find ways to disconnect.  The disconnection from being available is so that you can begin to connect deeper with yourself.  It’s important to tune into what makes you feel better.  It’s imperative to reduce levels of stress as researchers continuously find that stress aggravates most health conditions.

Don’t give in to temptation and sacrifice yourself for some cause or because it makes you a better friend.  You’ll be the best friend or family member in the world by showing by example that we can all be more connected when we make ourselves less available to the outside world and infinitely more available to our internal world.

Posted in In the Know, Personal Conviction

Making Changes

Most of us only make changes out of necessity.  We are great at talking about making changes, especially at the beginning of the year.  Unfortunately there isn’t a lot of momentum to implement the change and keeping things status quo are just a lot easier.  This is all true unless you’re facing a life-altering diagnosis and then everything changes.

When walking this earth with this type of challenge we begin to ask ourselves questions we never knew were inside us.  I’m not only talking about the questions like “what is the meaning of life?” but more questions about our own character an what we’re really made of based on our actions.  This is the time to begin looking at how to take this challenge and create opportunities for change that extend beyond your illness.

It’s about extending your life beyond words.  This is the time to take the words and listen deep within to see if what you’ve been talking about for years really resonates within or was only hot air.  If the words have substance then the next step is to figure out how to bring them to life.  How will you give your words the voice in the world it deserves.

When looking to bring our words to life it’s crucial that we believe it’s possible.  We need to know that when we make changes we will see results.  We need to know that even in the short term the outcome brings us closer to believing we have an internal engine that can achieve great things.  It’s not about running from something, but running toward something, you need to decide what that something is and how it will move your personal mission forward.

What would you like to be more personally invested in?  What small increments of change can you begin today?  It all starts with something small.  We need to get the pebble rolling down the hill so it gains momentum before big changes follow.

Posted in art and healing, Having a Voice, Self-Nurture

Keep an Open Mind

Keeping an open mind if often easier for us as patients than it is for the medical community.  However, I have run in to many people facing a life-altering illness who think treatment is to be done one way and one way only.  I was watching “Grey’s Anatomy” last night and one of the patients in the hospital awaiting treatment was a hands-on healer.  She went and healed various patients in the hospital much to the chagrin of the medical staff.

The true test came when one of the doctor’s child was critically injured and was on a respirator.  The doctor approached this woman to do a healing so her son could breathe.  After the healing, miraculously and thanks to the writers the child was able to breathe on his own.  The point here is that healing can take place in many ways besides pharmaceuticals and machines.

When deciding on a treatment plan it’s important to discuss all types of treatment options with your doctor and other treatment providers.  Remember, everyone needs to be kept in the loop so there aren’t any surprises.  If you’re going to an acupuncturist, tell your physician; and tell your acupuncturist about the medication your taking because it will impact the pulses she’s trying to bring into balance.

I’ve worked with people to bring about healing through art.  I find that ultimate self-expression is often a great catalyst for the body to step up to the plate and find its own balance.  If you believe in prayer look into the work by Dr. Larry Dossey.  It’s all individuals so don’t take a universal treatment protocol as your only answer.  Get your doctor to see you as an individual and not as a disease.

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

The Lone Ranger

Have you ever wondered how far removed we are from the animal kingdom?  I have this discussion with my vet every so often in regard to my cats.  We discuss the fact that cats have not been domesticated as long as dogs and every so often their natural instincts play out.  I began thinking about we as humans and our nature connection.

This afternoon I went to speak with the Rabbi at one of the local synagogues.  Having been raised Jewish I had some questions about where I feel I fit in the religious community.  As I move forward in my Doctor of Ministry degree I am exposed to many religions, faiths and spiritual concepts.   Having practiced only one faith I’m more inclined to be intrigued by others…it’s not like I’m looking to convert; I’m just looking for answers to those “what is the meaning of life” questions.

I’m currently reading the translation of Teresa of Avila’s “The Inner Castle”, a great woman, but obviously not Jewish.  The Rabbi commented that as a faith Jews are community based.  The Jewish faith is not a monastic tradition.  It was one of those Aha moments.  I’ve read lots about monastic traditions and although appealing, especially when things get crazy, I’m a community based person.

So what am I trying to say?  I want you to consider how you practice your religion or spirituality best.  Do you feel more in line with a solitary tradition or do are you more suited to a community/group based practice.  I find comfort in praying with others.  I feel energetic when I’m surrounded by the energy of others.  I feel part of something larger than myself when I am in the company of like -minded others.

This is important for our lives and pilgrims because it will impact your healing process.  If sitting alone and meditating works for you then that’s you’re chosen healing process.  If sitting on a pew in a church, praying the rosary, then that’s how you’ll heal best.  We all have a primary mode of connection both with people and with our God or whatever your spiritual source.

Know thyself and aid in your own healing process.

Posted in In the Know

Small Changes May Have Big Results

Having just entered 2008 many of us have made New Year’s resolutions.  We know that many of us will be drifting away from our resolutions just about now, the average is about two weeks.  What if you’re ability to control your health came is small, easily digestible changes to your daily routine.  You may be laughing but it’s true and not difficult to make part of your daily routine…I’m talking about drinking tea.

 Research is increasingly showing us that drinking green tea has health benefits.  I know we live in a coffee culture, believe me I’m one of the many that loves coffee, but the research seems to be growing about the health benefits of green tea.  It’s not only the tea itself but the ritualistic nature of drinking tea that I believe adds to its healing properties.

Coffee seems to be an on-the-go type of beverage.  In many homes and businesses it’s always brewed or brewing.  Tea on the other hand requires you to stop for a moment to prepare the tea and then a couple of minutes waiting for it to steep.  Finally after the tea is ready there is an inclination to drink tea more leisurely reducing stress and giving you a moment to center yourself and then proceed with your day.

If you look at the Japanese tea ceremony, it’s centered around the ceremonial experience.  It takes time.  It is connected to visiting with others.  All of these components, ceremony or ritual, spending time with others and the natural healing properties of the green tea add up to health and healing.  It’s a small change with the potential for a huge payoff.  Aren’t you willing to add momentum to your healing process by drinking green tea?

Posted in Personal Conviction

Let’s Not Forget About the “Care”

I heard an interview on Good Morning America with talk show host Glen Beck.  Glen had gone into the hospital for outpatient surgery and it was followed by complications that became very serious.  During the interview he was outraged by the care he received in the hospital.  It became so bad while he was in the hospital that he wanted to die.

The message is how do we put the “care” back in “healthcare”.  We have a nursing shortage in this country and the trickle down effect is more patients and fewer nurses.  I recently spoke with a woman who was wait listed for nursing school.  It wasn’t about her qualifications, but they didn’t have enough instructors to teach, limiting the number of students they could accept in the program.

Having a relationship with you healthcare provider is essential.  It’s easier to achieve with a doctor you see regularly, like your general practitioner.  When we have a health crisis we’re often starting from square one with new medical providers and if you’re not a good advocate you may get lost in the shuffle.  It’s not about will you get care, but what kind of care will you get.

Remember in “Terms of Endearment” when Shirley MacLaine began shouting for her daughters meds?  I’m hoping you don’t have to get to the point of screaming, but having a voice is crucial to getting the best care.  The optimal experience is to become self-empowered and ask for what you need.  Unfortunately, we’re not always in a position where we can advocate for ourselves.  It’s crucial that you have someone who can advocate for you and who knows you well enough so they can help you maneuver the system. 

Hospitals are often on very tight financial strings and it’s time that we aided in the healthcare revolution.  As patients we should be entitled to a level of care that is universal.  We shouldn’t have emergency rooms with a ten hour wait.  We shouldn’t have physicians who are working over eighty hours a week and expect them to be conscious both physically and spiritually.  Be a part of the change and become empowered to ask for the care you want and deserve.

Posted in Anonymity, Community

It’s a Small World

I was surprised to read that Dorothy Hamill, the famous ice skater, was diagnosed with breast cancer.  I wasn’t any more surprised than hearing that one of my neighbors was diagnosed, the difference is the world wide notification of the event.  It’s easy to believe that if we’re not a celebrity that we can keep our health secrets to ourselves, but that’s an illusion.

 There are obvious things that would tip off our friends and family that something health related was happening.  Someone may notice pill bottles in a cabinet.  Some treatments will leave the person without hair.  Some people may have to use some sort of a device to help with mobility, other signs are a bit more subtle.

What’s not subtle is showing up in your doctor’s office only to find someone in your circle already sitting in the waiting room.  That’s exactly what happened to me one afternoon and after the initial sense of awkwardness passed we could both release  a sigh of relief because we didn’t have to pretend to each other.

The world is a much smaller place than you can imagine, especially with technology keep us linked together.  You don’t have to share your health concerns with anyone, but be aware that you can’t crawl in a hole and be anonymous forever.  Most of us don’t have the option of staying in our homes with health professionals coming to us until our health issue is resolved or markedly improved.  We will be out in the world and you’ll find others are having similar struggles.  Know you’re not alone, and that may be enough to provide a small nudge of support.  It will at minimum reduce your feelings of isolation.

Posted in Community, Having a Voice, Partnerships

Who’s On Your Side?

It’s scary to think that the Presidential race is in full swing.  The Iowa caucus yesterday was the kick-off of the race for the White House.  I’ve heard lots of discussion about the war in Iraq and the a bit less on the economy even though polls show that’s the number one concern of the American public.  If the politicians aren’t discussing what’s number one, how do we have any chance of them discussing healthcare.

It’s at this time that we can have an impact on the political process.  Who is going to back funding for research for new medical treatments?  Who’s going to address the co-pay situation…I have one medication that if I had an 80/20 split I’d still pay $200 a month for one prescription.  Who’s going to pave the way disease prevention strategies and programs?

When facing a life-altering illness these are the questions you ask not just during the presidential campaign, but every day of the year.  For some illnesses, if a celebrity didn’t take center stage the illness would fade into the background and it wouldn’t receive funding, even if research institutions wanted to work on the project.  It’s why many individuals are finding ways to self-fund research.  I saw a story on World New Tonight about a mother whose child had cancer.  There wasn’t funding for the necessary research so she started a campaign to raise between 2 and 3 million dollars to make it happen.  Her first fund raiser, selling cookies, raised approximately $200,000.

 I’m in awe, but now it’s time that the politicians realize who they are working for…US!  Hold your politicians accountable and make your voice heard throughout this election year.  It could save your life!