Get Out of Your Head and Into Your Body

Our brains are like steel traps.  Once we get an idea trying to release it like trying to take a bone away from a dog.  I listen to people’s stories every day and I’m amazed at what energy we all put into holding on to stories that don’t serve us and in many cases harm us.  I’ll give you a quick example and then an experience I had last week that really helped me understand the importance of release.

As I mentioned earlier in the week, my brother recenty had surgery.  Thankfully the mass was benign, but leading up to the surgery (he had six weeks to ponder) the thought that followed him like a dark cloud was the he would die and leave behind a young son.  He did the equivalent of mental pacing in his head.  His thoughts would return to this place every time he was alone with his son.  Pacing doesn’t do anything except wear a hole in your carpet.  When we mentally pace we’re like a hamster on the wheel, going fast but not gaining any ground.  How can you get out of your head?

The class I attended last week was on healing trauma through nature.  The morning began with something called “body prayer”.  “Body prayer” is awakening the body to the present.  It orients the physical, mental and spiritual so that we can pry ourselves loose from negative energy and recurring thoughts that keep us stuck.  Our leaders for the week used a combination of Qi Gong, Yoga and song. We’d spend a half hour each morning engaging in this practice.

We need ways to move the energy and create opportunities for resolution.  Having the opportunity to strengthen the body, relax the mind and fill the soul invites you to create new roads, roads to resolution.  When facing an illness, having the opportunity to find alternatives, develop creative conversations within your body and with others helps alleviate the stress brought on by an illness diagnosis.

How do you get out of those circular though patterns?  What types of body work do you use to create new thought pathways and detours to lose the negative thought patterns?  Share with us and help expand everyone’s potential.

Win, Lose or Draw?

I was listening to NPR yesterday and heard that Leroy Sievers, the journalist battling cancer and the blogger of “my cancer”on npr.org died on Friday.  I looked forward to Mr. Sievers’ commentary on the radio.  He wasn’t melodramatic.  His story wasn’t being told by a celebrity, but by just one more person facing a huge health challenge.

Yesterday’s radio program talked about how Mr. Sievers didn’t like the war analogy for fighting an illness.  He was concerned about what happens when you die…do you lose?  He didn’t feel anyone with the courage and determination to take on their illness should ever be considered a loser.

This got me thinking because I’ve often used the war analogy for fighting illness.  I sat and thought about being a warrior, fighting a war, having to be a victor or a victim and I came up with some interesting revelations.

The biggest is that the war analogy for me is about an archetype, the warrior, taking onhuge challenges no matter the odds.  When I think about someone facing a health challenge engaging in battle it’s not always for survival, they may be fighting to keep their dignity in the process or maybe they’re fighting for self-sufficiency, no matter what each person does experience a traumatic event.

Then I got to thinking about what happens when you die from an illness, did you lose the battle?  Another meditation and I realized that the battle is an epic battle.  It’s the battle that preserves your own story.  I believe that if you die you didn’t lose to your disease.  I believe you lose when you don’t live whatever life you have in front of you to the fullest extent possible.  The problem is that sometimes there is no win or lose because people surrender, so is it a draw?

Use whatever framework will take you out of the victim role and give yourself every benefit to regain or maintain your health.  There are enough analogies in this world that I’m sure you can find one that fits your psyche, your soul, and your intellect.  Don’t use another person’s yardstick to measure your own level of success.  Success in health is as individual as the disease.  Whatever you do, do it with gusto, bravado and love!

Vulnerability is Difficult to Watch

Sorry for the break in the flow of the posts.  I’ve been out-of-town over the past twelve days…some good times and some hard times.  My first trip out of town was to support my family as my brother went for surgery.  His doctor found nodules on his thyroid and it was too big to simply extract the node so the doctor felt the best way to biopsy the node was to remove the thyroid.

The surgery was being done in the hospital’s surgery center with the hopes that he would only be in for 23 hours.  Following the check-in my sister-in-law, my mother and I headed for the waiting room.  When the doctor returned from surgery he sounded optimistic from what he could visually see in the operating room but we’d know more after pathology got it’s shot at it.

We went up to my brother’s room, waiting for him to arrive from the recovery room.  Just as he was transferring from the guerney to the bed my father walked in to the room.  My dad isn’t a good patient, he doesn’t like hospitals and tubes, monitors and white coats are not his friend.  He took one look at my brother with the IV and the monitors and had to leave the room.

I followed my dad out to the waiting room where he was sitting, but not just sitting, he was holding it together the best he could.  I sat beside him and he started to cry.  Now it was my turn to tell him that everything would be okay.  We expect children to be vulnerable.  We put on band-aids and well wishes and magically the child is laughing again.  Vulnerability in adults is very different.  I think after seeing so much pain in the world and recognizing the pain in our own lives, the vulnerability sweeps over us like a Tsunami, catching us off guard.

That’s the interesting thing about vulnerability, we can’t prepare for it.  We don’t have solutions on how to cope with the vulnerability and in the end we feel like we’re at the mercy of an emotion that shatters our assumptions about safety and health.

The key to overcoming the pain associated with vulnerability is to be in it.  You can’t get out of something if you haven’t been in it.  Don’t dance around the mouth of the volcano, jump in!  Experience the rawness that comes with vulnerability and embrace, it’s a message and understanding and accepting our vulnerability is what makes us stronger.  We overcome adversity and then we develop a deeper understanding of our own soul stamina.

Brace Yourself for the Unexpected

I’m noticing that more and more illnesses are coming with an adjacent diagnosis.  If it’s one thing we don’t want is two illnesses for the price of one.  Why do certain illnesses have co-diseases that are likely to show up?  Do we have the stamina to fight more than one battle at a time?  If we get one of the illnesses under control are we more likely to have the second illness recede?

The dual diagnosis of illness is not a given.  In most cases it is a small subset of people that actually get the secondary illness.  I’ve had an autoimmune disease for over thirty years.  Unfortunately, I’m one of a mere 5% that have arthritis secondary to my primary diagnosis.  What if I had those odds for winning the lottery?  I’d love to be one of the 5% who get a lump sum pay out.

Sometimes illness is like lining up a set of dominoes.  The first one gets knocked down and then the rest start falling in sequence.  This is one reason that creating a good medical team is important.  If your illnesses fall in two specialties, like mine, make sure that you create an open line of communication between the specialists.  They should each know what the other is recommending, administering, prescribing so they don’t work against each other.

It can be discouraging to have the secondary illness show up.  It’s hard to pinpoint the timing, for me I had one set of symptoms for years before the secondary diagnosis revealed itself.  The last thing we want in the world is to be a mystery to our doctors.  Make sure you get to tell your entire story before the doctor is allowed to make suggestions.  Everything is relevant when making the diagnosis, the onset, how long, when, where, could it have been in a milder form that you didn’t notice until it flared?  You’ll be surprised, as was I, that the symptoms for the secondary illness began long before I was incapacitated, I just wasn’t conscious to the signs.

I hope if you’re diagnosed with a chronic or life-threatening illness that you only have to battle one.  I never would have thought to ask my doctor about secondary illness, it wasn’t part of my consciousness.  I just finished a book about a physician with Parkinson’s Disease and he was then diagnosed with Lewy Body Disease which is a form of dementia.  At the time of your diagnosis ask your doctor about possible secondary diagnosis that are often linked to your primary diagnosis.  Don’t be surprised, but don’t be paranoid about it either.  Know the signs so that if changes start to occur you can get treatment early and hopefully arrest the progression.

Medicine is Not Separate From Money

If you live in the United States you’re well aware of the ongoing debate about healthcare.  There is talk about Universal healthcare but if we’re talking about socialized medicine I’m not sure the insurance companies would allow that to happen.  There is no doubt that those with insurance and those with premium insurance are getting more costly procedures.  This became even more apparent to me this weekend on news reports of Christina Applegate’s diagnosis of breast cancer.

First let me say that I’m thankful that Ms. Applegate’s cancer was detected early.  What confused me was the method of diagnosis.  The news agencies all report that Ms. Applegate’s cancer was detected by a routine MRI.  I’ve been in the medical field for a very long time and I can assure you there is no such thing as a routine MRI.  Insurance providers try and hold off on paying for such procedures.  There are other tests that would have been completed first that are less costly, unless you have big name doctors, a great insurance plan or are willing to pay for the test out-of-pocket.

I guess the real concern is where is the truth in the story.  If there was another problem they were looking for and that was what instigated the MRI then say so, but don’t call an MRI routine.  How many individuals are going to their doctors asking for a routine MRI just like Ms. Applegate.  News agencies are reporting what they’re told, but they don’t seem to be questioning the MRI as long as they got the story about the cancer…isn’t that suspicious?

This is the reason that many need to have an advocate who will serve to empower you when going through a health challenge because unequal medical care results in death.  What will you do to request and if denied then demand certain procedures?  Are you willing to use your voice to get the healthcare you need?  I’d love to hear how you advocated for medical care of any kind?  Be an inspiration for the rest of the world!

Choose To Be Happy

Welcome to another Caregiver Friday!

One of my favorite books is “The Traveler’s Gift” by Andy Andrews.  I’ve mentioned his book a number of times because I believe the lessons are simple and can be adapted to anyone’s life.  I was thinking about the caregivers I know and aside from being tired, many have present with a sense of defeat.  They know that the care they provide is important, but it’s certainly not the life they planned for.

In “The Traveler’s Gift” the main character meets with Anne Frank.  The lesson she presents is “Today I choose to be happy”.  I know that it may seem like a difficult idea to comprehend, but finding a way to rekindle and experience joy is crucial to caregiving.

Energy is like money.   Every day you are given a finite amount of energy.  The key question is how will you spend that energy today?  Financial experts will say that you should always pay yourself first and then divide the remaining money for creditors, in your case, those who need your caregiving attention.

What would you do to pay yourself first?  What activities or spiritual practices will you engage in to invest in you for today?  The bigger question is can you keep it up and continue investing in your own happiness.  You may think that there is a disconnect between your personal happiness and the care you give as a care provider.  The truth is the two are directly correlated.  When you give yourself the gift of time and the experience of happiness you develop physical and emotional resilience.  You learn to disconnect from the drama of day-to-day caregiving and awaken to a new set of priorities that benefit you and the recipient of your care.

My wish for you today is that you make the right choices that keeps you connected to your center.  I hope you find ways that inject happiness into your life so you get to experience the sunshine in the sky and in your heart.

Side Effects? What About Rehab?

We all want the best treatment for our illness.  Doctors are supposed to provide you with a thorough outline of the side effects of medications and the possible risks involved with any treatment plan.  We hear a lot about rehab when discussing cardiac health or following a stroke.  Do we need to extend our focus on rehab as part of the treatment process?

I’ve known many women who have developed lymphedema following surgery for breast cancer.  There are physical therapy programs that have been created to help reduce the risk of lymphedema and/or prevent the onset.  How many breast cancer surgeons either know about these programs and/or are making them part of the treatment protocol?

As you go through treatment the impact of any illness could be short term, but often the impact is long term.  If that’s the case your “new normal” may have to include finding new ways of walking through life.  I’ve worked with a textile artist who has severe Rheumatoid Arthritis, as part of her own rehab plan she hired an Occupational Therapist to come into her studio and find ways of mitigating the impact on her body while creating art.  That’s a form of rehab that we often don’t discuss, as an example.

I believe the goal of any treatment needs to be first and foremost to eradicate or mitigate the impact the illness has on our body.  Following the treatment the goal is to maintain your health, but also to maintain the highest quality of life possible.  In order for that goal to be met you may need to consult with a physical therapist or occupational therapist.  Perhaps you need to create order in your home or office, than a professional organizer may be able to help you turn chaos into order.

There are many types of rehab both physical, emotional and spiritual.  Don’t rule any out!  Have any stories about what you did to improve your quality of life following treatment?

Long Days and Longer Nights

One of the biggest challenges for those facing an illness either on the patient side or the caregiver side are the feelings of isolation.  It’s difficult when most of your contacts, friends and family, have had no or very little experience with illness.  You look for a sympathetic ear and although they mean well you probably know the blank stares that come your way.

During the day it’s easy to create diversions because there is so much to do.  It’s once the sun goes down and the world gets smaller that the sense of isolation increases.  For the patient and caregiver, trying to support one another isn’t helpful because you’re both fighting the same demon.  You try and remember what it was like prior to the illness and although your activities may not have been any different, like sitting in front the of the television, the implications of your new circumstance ring loud like bells in church steeples.

It’s important that you each set up some type of communication plan.  Care groups form to help ease the experience by cooking meals, driving the patient to an appointment or by picking up the phone and making human contact.  I know that sleep patterns are often not usual so what do you do when it’s the middle of the night, you look out your window and every light on your block is out.  Remember that with technology there is always a part of the world that is awake.  Illness and caregiving is a universal experience.  There are both those who can’t sleep who you can communicate with online and those halfway around the world who are dealing with the day-to-day challenges of facing illness.

Don’t let isolation get the best of you.  Come up with solutions to create a strong community and make sure that you utilize the resources that are provided to you (both of you).  What do you do to tackle those sleepless nights?  Let’s share so that we make the world less of a lonely place.

Do We Need Pharmacists In Our Home?

I was shocked yesterday when I read a report about the increase in deaths due to medication mistakes.  The shocking thing is that these mistakes happened to people like you and me in their homes.  Yesterday the statistics were presented in the Archives in Internal Medicine, Vol 168, #14.

The journal states “Deaths from medication mistakes at home increased from 1132 in 1983 to 12, 426 in 2004.  Adjusted for population growth that amounts to an increase of more than 700 percent during that time”.  I read these statistics and was horrified.  We would all like to thing that we know enough about our medications that we wouldn’t make a fatal mistake.  What about those who are on multiple medications due to illness?

The scary part is that most of the mistakes in medications at home are a result of our ever increasing use of over-the-counter medications.  There are interactions that without a pharmacy degree we can’t predict.  The other cause cited in the journal is the medical communities increased writing of pain medication prescriptions.  We don’t realize that certain medications like pain medication reduce our respiration.   Depending on what other medications we’re ingesting we could be cooking up a recipe for disaster.

Of course it’s not practical to have a pharmacist living in your home.   If you are facing any health challenge be vigilant about what medications you take.  Before taking anything, consult your pharmacist.  It’s better to ask too many questions of your pharmacist, than run the risk of mixing medications and dying prematurely.  Do you really want to run the risk of a fatal mistake?

Your Circle of Influence

Ever wonder how many lives you touch?  Many believe that only those of a certain status can influence the life another.  This past Friday, Professor Randy Pausch lost his battle with pancreatic cancer.  His “Last Lecture” became an Internet phenomenon.  Then we had the opportunity to see him on Oprah.  If that weren’t enough his “Last Lecture” became a NY Times Bestseller.  He inspired many people both sick and healthy to live life differently.

If you’re facing a health challenge your circle of influence is greater than you realize.  You may not have a television special done about your life, but is that how we measure the influence or the mark we’ve made on the world.  Every day we have contact with people and it’s our inner nature that leaves an indelible mark on the lives we touch.

So maybe you’re not a TV personality, so let’s focus on who you are.  Think about who you have contact with on a regular basis and what part you play in their life.  It could be as simple as helping a child who has fallen at the playground get back up.  Perhaps you decided after you’ve retired to join the Peace Corps or Americorps or began volunteering in your community.  Perhaps in a year like we’re in now you’ve decided to put on your political hat and become part of a campaign.  You may have chosen to save the lives of animals who without adoption would be euthanized.

It’s not about your degree of fame that determines your level of influence; it’s the conviction in your heart that is the beacon of hope.  If nothing else, when you are facing a health challenge, hope is the key.  When you’ve been diagnosed with an illness you do have a choice about how you will live your life.  You can live life isolated and as a victim or you can see what being a part of a community and striving to make the most of each day can do for your health and the health of others.

You have more influence on the world than you can imagine.  You share your values with those at the grocery store, coffee shop and daycare.  By sharing who you are and living life in partnership with others you rub off on people.  We all want to make sure we leave a mark on the world.  If you don’t listen to Randy Pausch’s lecture or read the book or watch the You Tube of his talk, think about the change you want to see and be in the world.  Don’t wait till you’re better, doing something incredible will improve your health.  It doesn’t have to be a world wide web sensation…keep it simple and the impact will be huge.