Posted in after the diagnosis, Anonymity, Caregiving, Community, coping with chronic illness, coping with life threatening illness, living with chronic illness, Living with Illness, Personal Conviction

What Do You STAND for?

The three major networks did something unheard of Friday evening.  The three networks combined forces, resources and audiences for “Stand Up To Cancer”.  It was a combination infomercial, telethon, education forum and entertainment.  The hope was to raise money for cancer research.  The commentators kept referring to the “dream team”.  The “dream team” refers to the network of cancer researchers on the brink of amazing discoveries for cancer treatment and cure.

It’s amazing that an illness takes center stage on the major networks during prime time.  The idea that together we’re stronger was certainly emphasized along with the opportunity to bring together big entertainment names shared amongst the networks.  It is truly a tribute to ingenuity and technology when the networks for the good of the country and those facing devastating disease can be helped.

Then last night ABC showed “America Stand Up”, all this standing could make you tired.  The show was a tribue to our troops who are fighting overseas for our freedom.  It’s through their commitment and bravery that change can happen in the world.  Remember, this is about supporting the troops, not supporting the war…there is a big difference.

All in all what does this tell us.  It punctuates that when we come together we’re stronger.  It shows us that standing for something, anything is enriching and builds our immune systems.  When we feel engaged and empowered to be a part of something bigger than ourselves we experience gratitude and that feeds the soul.  The notion that we can alter the course of history is worth noting.  We’re able to bring to the public’s attention information while asking for help to make the world a better place?

What do you stand for?  How do you think it impacts your life?  How do you want to use your voice?  Share it with us and let’s stand together!

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Posted in Anonymity, Caregiving, coping with chronic illness, coping with life threatening illness, Having a Voice, Living with Illness, Partnerships, Personal Conviction

Politics and Caregiving

Welcome to Caregiver Friday the Sequel…

I obviously got a bit confused yesterday thinking yesterday was Friday.  Well I’m here to tell you it feels like Ground Hog’s Day reliving my own Friday, but here it is.

We’re truly in the midst of the political season.  I want you to consider how you will use your vote now and in November.  This isn’t about party lines, political parties or specific candidates.  This is about your searching your soul as a caregiver and deciding how your needs will be addressed in the coming years.

Ask yourself the following questions:  How will health coverage be handled?  As a caregiver the amount of health insurance/coverage will have an effect on how far your money goes?  Who will put more money into research for the disease the person I’m caring for is challenged?  This has an impact on the likelihood of a cure being found or at minimum new treatments that could increase the patient’s quality of life and decrease the stress on you as a caregiver.

Research how the national organizations devoted to your disease are positioning themselves in the political arena.  Understand what their concerns are and do they match yours.  Remember that all politics is local no matter the scale of the election.  Politics is certainly subject to the ripple effect; the pebble drops and ripples out to the edge.

We often hear patients speak up for their needs in the political arena, but what about you the caregiver?  You’re not merely an after thought, you’re in the thick of the medical arena so your voice has to count.

Truly, this isn’t about one political party or another.  This is about your voice, not being anonymous and getting your needs met so you can increase your quality of life as well.  How will you use your voice?  Share with us how you hope to make an impact on the coming election(s), all of them, national down to the local!

Posted in Anonymity, Community, Having a Voice

Truth Telling Helps Overcome Adverse Reactions

When confronted with a life-altering illness we depend on our doctors to provide the best treatment for our condition.  As you begin treatment the hope is that your doctor discusses both the positives and negatives of any treatment so you’re decision is based on informed consent.  The pharmaceutical companies job is to bring new products to market to improve our health, but unfortunately many don’t know what the long term impact of their inventions will be.

If you have seen one of the many medication commercials on television you’ll notice that at some point in the commercial a voice will come on giving you the potential side effects.  The difficult part is that this may only be a short list of the possible side effects.  There are two parts to this dilemma, the lack of long term data and the lack of reporting by us the consumer.

Studies show that doctors and patients seldom report adverse reactions (side effects) to the drug manufacturer.  As pilgrims on the journey to health it’s important that your voice be heard.  Remember in school when the teacher would “ask your question because others have the same question”?  The same is true with medication side effects, if you’re having them the odds are good someone else is having them.  If we don’t come forth this doesn’t get documented and accurate and informed decisions about treatment options don’t get made. 

Stepping out of the patients place of anonymity you do two things; you allow you doctor to help with the side effects either by altering the dose, changing the medication or in all likelihood giving you one prescription to handle the side effects.  Second is that you are speaking for many people who are taking the same medication.  You have the opportunity to become a partner with your physician and the pharmaceutical company in creating medications that retain their efficacy while diminishing side effects. 

The other important factor is that when doctors or patients inform the pharmaceutical company about the side effect, they are required to include that information to the Food and Drug Administration (FDA).  This allows the FDA to make better decisions about the safety of a medication.  Do your part, don’t stay quiet!  If you have side effects, report them and become part of the solution.

Posted in Anonymity, History, In the Know

Homage to our Heroes

When we walk this world as a pilgrim we are in search of answers.  Sometimes the questions are those of an inner nature, emotional or spiritual.  Other times the questions are very pragmatic, especially when facing a life-altering diagnosis.  The questions that rise to the surface are related to research, treatment options and new frontiers.

It’s important to know about the researchers who are working on your particular health issue.  Become familiar with their names and talk about them.  It’s important to increase their name recognition because that brings attention to the work their doing and down the road can result in increased funding for research. 

There are some great men like Dr. Judah Folkman who prefer to be quiet heroes.  They don’t like to be in the spotlight and deflect the attention from individual attention to repositioning himself as part of a collaborative.  His work in cancer research is heralded as ground breaking and the foundation upon which much of today’s research is based and yet his humanity always shined through.

In a recent Newsweek article, following Folkman’s recent death the article referred to his tenacity when facing scientific skepticism.  They go on to share the fun other scientists had with his ideas, almost in a mocking fashion.  But the tides would turn and researchers would come to understand not only the plausibility of his work, but the realization that his work could and would be the epicenter of treatment coming down the pike.

The article shares a great quote from Folkman about the asking questions to get ahead.  He said, “You have to think ahead, Science goes where you imagine it.” So give the researchers working on your behalf the honor they’re due.  You can always find out about the work by logging on to the associations and organizations that support your health issue.  Become a pilgrim and find your own soap box.  The result down the road can be great findings that can improve your health and the quality of your life.

Posted in Anonymity, Having a Voice, In the Know

Is it Really Possible to be a Tourist?

Ever hear the saying “Been there, done that, bought the t-shirt”?  When we are a tourist we go somewhere as an observer.  We participate on the fringe.  We look, often are told not to touch and at then end of the day we smile because we enjoyed ourselves.  There is not attachment to the outcome because the only expectation is to have fun.  Why do some people facing a life-altering diagnosis live their lives like tourists?

The easy answer is fear.  If someone receives a life-altering illness and takes no action, without really giving it careful consideration it’s like being a witness to a horrible accident, only in this case they’re the victim.  On the other hand, there are people who receive the diagnosis, go to the doctor, engage in treatment but are removed from the process.  For them it’s like having an out of body experience (not sure how that happens when it’s their own body).

Those of us who walk this journey as pilgrims know that we have to get down in the trenches and sure enough we’re going to get dirty.  There are times, like on the 500 mile pilgrimage in Spain, that you’re thinking the journey will never end and the suffering, pain and exhaustion are endless.  In many cases, the challenge has defined margins but it’s hard to see the end when wind is blowing in your face (like all the media discussing longevity, research trials and the endless pharmaceutical commercials on television).  What we need to remember is that having faith in our journey is the primary means of being a participant in your care. 

The pilgrimage is long because you have to show commitment to your healing.  The pilgrimage is long so you can have time to weed out of your life those things that don’t matter or get in the way of living a better, less burdened life.  The pilgrimage is long because you need time to take back the control you lost when you received your diagnosis.  It’s a time to regroup and re-attack.

We can’t afford to be tourists in life when facing a diagnosis.  Remember, those who are well behaved rarely make history.

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 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.