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

It’s a New Dawn…It’s a New Day

I’ve been driving across the country the past couple of days.  I decided I would leave early in the morning to try to drive a few hours before any commute traffic might appear.  I’m driving the northern route along Interstate 80 and I’m driving east.  It’s amazing to see the sun begin to rise in the morning.  Driving along and see the sky begin to change colors as the sun rises is amazing.  We all know it’s a gradual process, but it’s as if one moment it’s dark and then it’s light.  If you pay attention to the rising of the sun, you’ll see the gradation in color.

I have a tendency to take a thought or idea and branch off into other ideas.  This process led me to begin thinking about the new Weight Watcher commercials starring Jennifer Hudson.  She sings, “It’s a new dawn, it’s a new day…and I’m feeling good.”  Watching the sunrise made me focus on the idea that ‘s a new day and what follows?  So what am I going to do with this new opportunity?

We awake, maybe you hit the snooze a couple of times, but then it begins…your usual routine.  It doesn’t seem like a new dawn and a new day because your day may seem very routine since being diagnosed with a chronic or other life-altering illness.  What can you do to make it unique?  Many years ago I had a daily commute to work that was 40 miles each way.  A friend of mine, a Buddhist priest, told me that it’s important to find something new every day on the drive.  It does two things: it makes the trip go faster, but more importantly it makes the routine seem fresh and new.  If we take this as a practice, it creates a shift in our consciousness.

It’s too easy, whether or not you have an illness, to create our days to look the same because the actions are the same.  What would you need to do to change one thing to make the day fresh and new?  How would you take your health and healing routine on a new route so that the day is fresh and new.  It is a new dawn and a new day, so how will you make that statement ring true for you?

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Posted in after the diagnosis

Everything Changes in a Second

If you’re old enough when asked where you were when President Kennedy was shot you zero in on that moment like it was yesterday.  If you’re a bit younger, a more recent moment in time was September 11th.  This brings up many thoughts and emotions and those experiences are relived every time you tell the story of what you were doing.  Many people remember where they were and what they were doing the day the O.J. Simpson was found not guilty of killing Nicole Simpson and Ron Goldman. 

Saturday the country suffered another one of those seconds in time when everything changes; an individual shot and killed six people and gravely injured Congresswoman Gabrielle Giffords.  Time is a funny thing because even though it’s the same we experience it differently depending on the situation at hand.  I’m sure on Saturday the people attending the Congresswoman’s event feel like time was a blur.  It becomes a domino effect when the news outlets begin reporting and we all get caught up in the horror.  Those directly impacted receive the support of a nation, but what about you?

I have no doubt that you remember the day you received your diagnosis of a chronic or other life-altering illness.  My story is a bit different because I was diagnosed as a child, and there had been an inkling when I was very young what lay ahead for my health.  How much do you remember about the day you were diagnosed?  What type of support did you receive on the day you were diagnosed and the days that followed?  Your story wasn’t covered on the news so how do you round-up support.

When a tragedy like the shooting in Tucson occurs it’s on every news cycle for days.  When you were diagnosed there was no media coverage so the first thing that happened was you had to tell people what just happened to you.  There weren’t media outlets reporting on the change that happened to you so the support you received was directly correlated to the number of people you were able to tell. 

One of the things that many people I’ve worked with in the past have done was to create a blog or a website following their diagnosis to keep their friends and family informed of their health status.  This allows people to offer words of support without having to be intrusive.  It also allows you to give those in your life up-to-the-minute information about your life without having to field lots of phone calls. 

What happened on Saturday was a tragedy for the individuals and families who were victims of the shooting; as well as the country.  Your diagnosis was also a tragedy.  It changed everything in your life in a moment, but the question to ask is, “How did you move forward following the diagnosis?”  and “How do you continue to move forward on your journey to health and healing?” 

A “second” seems so small and yet the fact that everything in a person’s life can change in a “second” give it a place of importance.  I hope you continue to take care of yourself and allow every “second” to count!

Posted in Caregiving

Stop Breaking Your Back

Welcome to Caregiver Friday!!

I know that some believe the big question is, “What is the meaning of life?”  Afer careful consideration I believe the big question is, “Why are we so afraid to ask for help?”  As caregivers you know how much responsibility you take on to make sure the life of your loved one is of the highest quality and least pain.  Unfortunately, many studies on caregivers show that not only do caregivers face emotional difficulties like anxiety and depression, but they also have a high degree of physical problems, particularly back pain.

Last night a story on ABC Nightly News with Diane Sawyer showed that help is available if you ask for it.  There are good people who are selfless willing to assist.  The problem is they can only offer to help if they know you need it.  The story revolved around a little 8yr old boy, Sam Parker.  Sam was born with Cerebral Palsy and is fed by a G-tube.  He’s immobile, doesn’t speak, and is blind.  His family was taken care of this 75lb boys needs since his birth.  unfortunately, his father had major heart surgery is unable to lift Sam making getting Sam up the stairs for bed difficult.  The family put out a call for help to the local high school and that’s where the magic happened.

The call for help was answered by the captain of the football team, Rudy Favard.  Rudy comes to the Parker’s home four nights a week at 8pm to carry Sam up the stairs to bed.  It’s interesting to hear about how Sam’s relationship with Rudy is developing.  Although you need help the patient may be a bit reluctant, but as we hear about Sam that uneasiness dissolves a new relationship/bond is formed. 

When Rudy Favard was interviewed he shares what a gift it is for him to be of service to this little boy and his family.  You can hear in his voice and his story how much joy the relationship with Sam brings.  When Rudy began helping Sam make it up to bed he was stiff and non-communicative.  Things have certainly changed; Sam now wiggles and giggles when Rudy carries him up the 14 stairs to his bedroom.

What if the family had never asked for help?  If they had tried to manage the situation themselves someone in the family could or would have been severely injured.  It would have increased the amount of stress in the family and that’s never good for a cohesive family bond.  Sam would have become the focus of the stress and that’s never a good thing.

Help is out there is we ask for it.  I’m sure some why we don’t ask for help is a combination of shame and pride, but let’s put that to the side an understand that it does take a village for us to move forward in our lives.  When a member of our tribe is ill or injured, others are willing to help ease the burden and keep the tribe together and moving forward on the journey to health and healing.

Looking for more caregiving tips?  Get your FREE e-course, The Courageous Caregiver at www.survivingstrong.com

Posted in Having a Voice in Healthcare

When Medical Studies Are Corrupted

Did you hear the big news yesterday?  The study that says that the measles vaccine in children causes autism turns out to be a fraud.  The British Medical Journal claims that study was an elaborate fraud.  It seems that Dr. Wakefield, the doctor that did the study was paid $700,000 for the outcome of the study.  What has this done with parents in the United States?  It caused parents to questions and in turn refuse vaccinations for their children.  There has been a drastic decline in the number of children being vaccinated…hopefully this will change.

Why is this an important topic?  Because many of you who have been diagnosed with a chronic or other life-altering illness depend on these studies, as do your doctors, to develop treatment plans.  This could mean the difference between getting better or getting worse.  It’s amazing that parents made their decisions based on one study.  I find that to be a bit unusual, but panic sets in and since autism is truly scary for parents I can understand them climbing on board to save their children.  So what does this mean for you?

It means that if you’re looking for particular new treatment options talk with your medical provider.  If you’re looking at specific studies ask to see the studies.  If there is only one study done ask the medical provider why they are willing to begin this treatment protocol without other studies to substantiate the findings.  There are cases where a study is ended early because the outcomes are so startling and the benefits of the drug are quite pronounced.  It’s okay to ask your medical provider questions about the studies they follow and in turn then use for treatment plans.

As patients, we have a responsibility to ourselves, our lives, and our families to be as thorough as possible when investigating treatment options.  The study about vaccinations and autism was done in 1998; that’s 12 years of trauma inflicted on parents who are struggling to decide about vaccinating their children.  In addition, parents who did vaccinate their children and their child is autistic have been suffering with their decision to vaccinate.  According to news reports, there are no studies that correlate vaccinations and autism, other than the one that was just deemed a fraud.

Be careful.  Be thorough.  Be curious.  Be a participant in your healthcare!

Posted in art and healing, creativity and health

What Do You Celebrate?

Welcome to Art and Healing Wednesday!!

We just finished the holiday season, but I’m still wondering what you celebrate?  We all celebrate different things for different reasons.  I’m not sure why but we often think of celebrations as religious or congratulatory.  In fact, life should be a celebration and for many it is, but following a diagnosis of a chronic or other life-altering illness finding something to celebrate may be a bit more difficult.

This question posed itself last night when I received my packet of postcards and brochures for a textile art exhibit opening next week at the Longmont Museum in Colorado.  The exhibit is called, “America Celebrates”.  Judith Trager, an internationally recognized textile artist and author, was asked to curate this show that will travel for the next three years around the United States.  Judith asked 53 artists, of which I am one, to create a work of art about something we celebrate.  The only requirement was that the piece had size limit of either 24×24 or 24×36. 

It’s one thing to celebrate an occassion, but what about milestones in your life?  For some there may be a celebration when you finish treatment.  Others may celebrate after numerous check-ups where there has been no disease progression.  Perhaps you celebrate because a new medication was finally approved bh the FDA.  In native or aboriginal cultures, celebration may take the form of song and dance.  Every culture is different, but it makes me think about how I want to celebrate milestones in my life. 

I create a Christmas quilt every year (I’ve got quite the collection), but what else can I celebrate by creating a work of art?  Maybe celebrating the fact that my auto-immune disease is steady, no flare this year during what is usually my circadian rhythm for such an event.  Perhaps it’s time to celebrate having health insurance at a time when the newly elected Republican majority hopes as of today to begin undoing healthcare reform. 

It doesn’t matter what you celebrate, but doing it creatively is fun and honors where you are on your journey to wellness.  I’d love to see some of your creations.  Feel free to e-mail me at greg@survivingstrong.com, or if simply hit the comment button and share a story about what and how you want to celebrate the life you’re living!

Posted in Emotional Health

Is “One” Really the Loneliest Number That You Ever Knew?

Last night I attended a group meeting where we discuss different topics related to one’s emotional life.  The topic for the evening was “aloneness and loneliness”.  It’s a topic I’m familiar with personally, but it’s something I think is part of the human condition and the topic never really leaves our lives.

Being diagnosed with an auto-immune disease as a child left me feeling lonely.  I was the only one I knew who was facing a health challenge and socially it left me at odds with myself and my social development.  I remember trying to avoid any discussion of my illness and didn’t know where to turn.  Doctors weren’t a support and although my grandfather had the same health challenge we never discussed it…I don’t think he ever dealt with it on an emotional or spiritual level.

As we went around the room last night many if not most of the group, when discussing loneliness, spoke about isolating.  Members of the group continued sharing and the word isolation kept coming up and the more they said it, the stronger my gut reaction was saying, that’s not it for me (even though that’s what I had said at the beginning). 

My A-ha moment came when about the 10th person talked about wanting to be a part of something, a group, a sense of belonging and that’s what combats loneliness.  In that moment, I realized that when I’m the most lonely is when I’m disconnected from myself.  My feeling lonely is a sure sign that I’m not paying attention to my own needs.  I’m trying to fill my life with events, and people, but not necessarily focusing on my heart and soul.

There was some talk about filling your life by making plans and that combats loneliness.  It reminded me of a story from my childhood.  I have a younger brother and he would chase me (don’t ask me why or why I participated).  I would yell to my mother, “Mom, he’s chasing me”, and she would reply, “Stop running and he can’t chase you”. 

That was my reaction to the idea of overcoming loneliness by making plans.  What happens when we stop running, when we stop making plans to fill our day, when we schedule our days so full hoping to be filled up?  I’ll tell you what happens, you go home exhausted and the loneliness creeps in because you never really dealt with it.

Being diagnosed with a chronic or other life-altering illness can be very lonely.  Very few of us have the opportunity that big stars like Michael J. Fox,  Suzanne Somers, or Montel Williams have where they wrote a book about living with their illness and then travel the country meeting others who are living the same experience dissipating the sense of loneliness. 

This is the benefit of support groups.  They give you a place where when someone says, “I know how you feel”, the odds are good they’re telling the truth, not simply placating you.  I’m a big proponent of support groups but there is a caveat.  The group needs to be facilitated by a trained and competent facilitator.  Nothing can leave you feeling lonelier than a group that has driven far off course and you’re still standing on the road wondering where everyone else went. 

How do you combat loneliness?  How do you foster a connection with yourself?  I’d love to dialogue with you about this.  Simply hit the comment button and think of this as your own support group where you’re not alone and hopefully that results in reducing your sense of loneliness.

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

Bags Fly Free

The airline wars have increased in number and intensity over the past couple of years.  Carriers are all fighting for your dollars and with high hopes that you’ll fill their seats.  Low cost carriers have depended on their low fares as being enough, but the idea of paying for bags has increased many carriers ticket prices in the mind of the consumer.   Southwest Airlines “bags fly free” has saved me lots of money, but my life isn’t an airline carrier.

What am I getting at?  We all have baggage, and if our lives were like Southwest Airlines, we’d be carrying around our baggage without any negative consequences.  The fact of the matter is when we carry around baggage we do pay a price; physically, emotionally, and spiritually. 

I’ll give you an example.  Along with Surviving Strong, (www.survivingstrong.com) I’ve had a portion of my business that has caused me concern.  It has taken up a lot of my time, effort, energy, and money.  I kept telling myself that things would change, but I can tell you that after lugging this project up the mountain for seven years I finally reached my breaking point.

I got a call a few weeks ago from my website carrier and the customer service agent told me I had a few domains getting ready to expire and did I want to renew them.  At  that very moment I woke up and said, “NO”.  I decided in that very instant that I’d carried this project long enough and it was time to put it on a piece of ice, chop that block of ice off the glacier and let it float away.

How did this help me?  I felt lighter immediately.  I realized that I’d be better able to concentrate on aspects of my passion and work that excite me to the extreme.  I understood in that moment that release can be the best medicine for the soul.  I recognized and chuckled at the self-talk I’d engaged in for years believing that if I did just one more thing things would change.

I’m more focused.  I’m more attentive to the things that need my attention, like creating art that’s focused on the healing nature of the body and soul.  I don’t have competing thoughts so my energy can be more focused and the intensity of a laser is much greater than the intensity of a flood light.

What bags are you carrying around that you’d like to leave behind?  Bags don’t fly free in your life, so don’t keep paying for carting them around.  I’d love to hear what bags you’re going to send-off into the sunset on that piece of ice floating away.  Just hit the comment button and share what bags you’ve decided not to pay for any longer.