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

New Applications for Treatment Options

The longer I work with those facing chronic and life-threatening illness the more amazed I am at the growth in technology and treatment options.  One of the great things is the ability to take something that is out on the market and find new applications for its use.  By finding new applications you save lots of time in the creation of a treatment modality and refinement becomes the priority.

As you may have read in an earlier article I attended a conference on COPD (Chronic Obstructive Pulmonary Disease).  While walking through the exhibits area I met Jasti Salem the clinical area manager for Electromed Inc.-SmartVest.  We began talking about the SmartVest for its use with COPD patients.

The SmartVest is a vest that vibrates and as it vibrates it loosens the mucus that is built up in the lungs, obstructing the airways.  This treatment has been used for a quite a while for patients with Cystic Fibrosis (CF).  Usually the patient wears the vest twice a day for about 30 minutes.  Jasti showed me the research study showing the positive results for patients with COPD.  The vest is light weight and washable.

It’s this type of collaboration and thinking outside the box that works in the patient’s favor.  By taking technology that already exists and adding new features that not only increase the efficacy of the treatment but the comfort for the patient is important.  When treatment is comfortable and easy you’re more likely to be compliant with your treatment plan and gain big results.  This leads to an increase in self-empowerment.  It allows you to increase your quality of life.  When you increase your quality of life you become more optimistic and optimism is a key player in the mind-body connection.

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

Every Person Has a Legacy

It was very sad to hear that Paul Newman died Friday after facing cancer.  Looking at all the news stories it’s amazing all the ways that Paul Newman had come into our lives.  The most obvious is his film career and his marriage to Ms. Woodward.  He’s also noted for race car driving and if that weren’t enough a brand of foods promoting healthier ingredients.  He started camps for children with life-threatening illnesses.  That’s a pretty big legacy.

When diagnosed with an illness one of our thoughts is often “How will people know that I was here?”, or “What mark will I leave on the world?”  These are important questions but aren’t tied to how much money you have or what you donate to causes.  Your actions can serve as your legacy.  When your words and actions match you leave a lasting legacy.  When people who know you believe you are an authentic person, that’s a legacy.

Often one of the legal parts of a life-threatening illness is a will.  The will distributes your earthly assets.  What about another type of will, a living will that doesn’t refer to medical treatment, but the values you hope you leave behind.  Leaving behind or stating clearly while you’re alive the values you hope to have demonstrated is a powerful gift for those in your life.  It can be the foundation for others to base their lives.  It’s a powerful legacy because it lives in the hearts of the people you care about.

If you have the money and want to build a wing of a hospital or put your name on a building, that’s great.  If you want your loved ones to know the importance of a good work ethic, kindness, compassion, family and love then all you have to do is share your hopes and reflect on your actions.  It’s very powerful!

Posted in after the diagnosis, Caregiving, coping with life threatening illness, Emotional Health, Having a Voice, living with chronic illness, Partnerships

Creating a New Mantra

Welcome to Caregiver Friday!

Ever feel that once you assumed the role of caregiver that you automatically became a magnet for every negative emotion in the world from those around you?  Ever wonder how things you did every day before the patient got sick that were fine are now the bane of their existence?  Ever wonder why you have become the human fly paper for the negative emotions expressed by the care recipient?  I could go on and on but I think you’ve got the point.

The truth is that the care recipient (the patient) is going through enormous turmoil and they are, as the Buddhists say, leaking.  They have a reduced capacity to govern their feelings because they are overwhelmed…and so are you.  The difference is some say the illness is a “get out of jail free card” for their behavior.  The truth of that statement doesn’t matter, the outcome is what matters.  So what’s the new mantra for caregivers?

“This Has Nothing To Do With Me”

The reason that the emotion is directed your way is because you are there.  You have devoted your time, energy and compassion to assisting the patient in getting well.  It’s not that they don’t appreciate it, but if they spoke to or treated friends the way they speak and treat you at times those folks would be gone.  The first question to confront is what truth is there in the complaint.  We’re all at fault at times so keeping your side of the street clean is primary.  This doesn’t mean you should hold back how you feel, but definitely choose your battles.

The mantra “This has nothing to do with me” should be tattooed on the palm of your hand.  You’re going to need a constant reminder so if you’re not into tattoos then consider post-it notes on the mirror of your bathroom, by the telephone or by the computer.  It’s going to take some time to say that fly paper is all dried up, the magnet turned off and the complaint department closed.

Understand that this doesn’t mean you stop caring for the person, but you are refusing to take on their emotional turmoil when you have enough of your own.  It’s okay to set parameters for dialogue.  Discussions are good, arguments don’t serve any purpose.

Some may say that you shouldn’t judge a person before you walk a mile in their shoes.  We’re not judging the person with the illness.  We’re creating a container of understanding by visualizing their leaking emotions.  For some of the folks you’re caring for it may seem like a breach in a nuclear reactor so you may need to say your mantra over and over again.  It’s kind of like the 12 step programs and the serenity prayer.  When people need a moment to regroup they say the serenity prayer to ground themselves.

I hope you can see that by accepting this new mantra you’re not becoming uncaring; in fact I think you’re extending your care because now you have a new level of understanding.  Instead of feeling bogged down by the anger or frustration by the patient you can chalk it up to a breach in the nuclear reactor.

How are you handling the frustration expressed by the care recipient?  This is an important aspect of caregiving because left unresolved it leaves you, the caregiver, feeling unappreciated and that leads to resentment.

If you have a mantra that gets you through your caregiving experience please share it with us.  The goal is to create a strong caregiving community full of resources and support.

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

Lessons from Oprah, Jenny McCarthy and the Warrior Mom

Yesterday Oprah’s choice of guest hit it out of the ballpark.   A woman, Monica Jorge, who had everything going for her, a loving fiance, a 9 year old daughter and she just gave birth to a baby girl.  Unfortunately the story takes a huge turn for the worse.  Right after giving birth they learn that the woman has contracted a flesh eating bacteria.  In the end the new mom along with internal surgery had both arms and both legs amputated.   At this time she’s had 37 surgeries and isn’t finished yet.  Let’s look at the lessons we can learn from Monica as it relates to anyone facing a chronic or life threatening illness.

1.  Follow the Chinese proverb, “Fall down seven times, get up eight”.  Perseverance is crucial for anyone facing a health challenge.  Having the capacity to explore your limits will get you through the challenge.

2.  Unearth deep in your soul what your priorities are.  If your family is a priority understand that not having you around will be a bigger detriment than the struggle with your illness.  If your work on this earth isn’t done then make sure everyone around you knows that you still have work to do, include the Universe in on that memo.

3.  We all need champions.  Jenny McCarthy works extensively promoting information and policy reform for families facing autism.  Know who the champions are that face the same health challenges.  Here are just a few: Cancer: Lance Armstrong; Parkinson’s: Michael J. Fox; Multiple Sclerosis: Montel Williams; Spinal Cord Injury: Christopher Reeve; Post-Partum Depression: Brooke Shields; HIV: Rudy Galindo.  These individuals bring recognition and a spotlight that can bring money for research and treatment.

4.  The human spirit is larger than the human body.  If we look at the challenges Monica faced there was a well of energy that was superhuman.  She was able to go down deep and summon the courage and conviction to not only beat the illness, but to get through rehab in record time so she could care for her family.  Loving connection is that force that recharged her battery and defined her mission.

5.  Throw pity out the window.  This isn’t to say that having the “why me” moment shouldn’t be a part of your life, but give it a container and set limits.  You have a lot of work to do and the pity pot will drag you down, lower your immune system, increase depression and create a scenario where pessimism reigns supreme.  If you need to express those feelings set a time during the week with a finite amount of time and go to that place and then get back to the job at hand…getting well.

Find a hero that you can relate to.  Monica’s story was so big and so amazing but I know these kinds of stories exist in your own neighborhoods.  There are lots of amazing people who are fighting illnesses in your community, you don’t have to look far.  Overcoming adversity is the name of the game.  Come up with a plan and fight for the life you want.  It may not be the life you intended, but it’s all you got so do the most with the resources you have.  You’re a miracle, so live like one!

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

When Everything Falls Into Place

You’re past the point where the doctor has said those words “I’m sorry to tell you…” and you’ve either begun treatment or have moved beyond treatment.  Along the way once you got over the shock there’s often a moment, a crystallizing moment when everything falls into place.  The clouds that obstructed your vision have cleared and the reality of the illness has taken center stage.

When the fog clears the moment that can be most beneficial is when life crystallizes hard and sharp.  There is little if any ambiguity about what lies ahead and how you’re going to handle it.  This is the point of empowerment.  You have reached the understanding of what it will take to stay healthy.  You have come to a deep understanding of your inner resources and you’ve put them to use to overcome the health challenge.  You have enlisted the help of others who will be your surrogates when your energy is low so the momentum doesn’t falter.

My hope for you is that you have a crystallizing moment.  There can be no greater adjunct treatment then disposing of the pity and the “I can’t” attitude and moving toward the place of hope and achievement.  I’ve said it before and I’ll say it again, not every disease is curable.  Healing is very different than cure.  Holding on to your self-sufficiency is critical.  Understanding that decline is not losing, it becomes a new normal…unfortunate, but sometimes reality.

Know that as you move along your journey to wellness there will be always be challenges, but the line is drawn in the sand…you’re empowered to experience your health any way you choose, I hope you choose healing.

Posted in after the diagnosis, coping with chronic illness, coping with life threatening illness, Emotional Health, living with chronic illness, Living with Illness, Personal Conviction

Life Lessons from Determined Individuals

Part of my morning routine along with feeding the dogs and drinking coffee is watching the start of Good Morning America.  It’s amazing the tidbits I hear about new treatments, clinical trials and even simple life lessons.  Today is one of those days.  Chris Cuomo (son of former NY Governor Mario Cuomo) shared a news story about a 12 year old boy names Levi Johnson.

Levi Johnson was born with Cystic Fibrosis (CF), a devastating lung disease.  Most parents would shelter their children from any chance at infection and the child would be fairly insulated physically and socially.  Levy achieved a phenomenal achievement.  He won 2nd place in a National Bull Riding competition.  That’s not just great for someone with CF, it’s amazing for any kid his age.

I began thinking about all those I work with who have some type of chronic or life threatening illness and began counting all the self-limiting stories we all tell ourselves about what’s possible.  What if you had someone in your life who would encourage you, support your or simply challenge you to get out their and keep riding (metaphorically)?  What is it that you want to do and what’s stopping you?

It’s clear that not all of us even when healthy would have been able to achieve what Levi achieved, but there is something in your world that is equally as important to you that’s waiting for you to begin.  Hopefully it’s something just outside your reach so you have to stretch a bit, but it’s doable.

If nothing else take a lesson from this 12 year old boy…get back on your own bull and keep riding.  The limitations we impose on ourselves can be more harmful (especially emotionally and spiritually) than the disease itself.

Let me know what you’re going to tackle and let’s see how we can support you!!!!!

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

Treatment with a Guarantee?

It’s interesting to read about medical providers who are not only coming up with innovative treatment plans, but also finding that good medicine is good for the medical providers bottom line.  I came across an article in the business magazine “Fast Company”.  They showcase cutting edge ideas and this one about healthcare caught my attention especially in the midst of a political campaign where the candidates are talking about healthcare reform.

The treatment in the article is a coronary artery bypass graft.  They state that they are charging a flat fee and if the patient incurs any preventable complication putting the patient back in the hospital, the hospital picks up the tab.  They have come up with a forty step process that standardizes the treatment protocol so no one involved in the patient’s care overlooks any one item.  Accountability is included in this process helping to cut down or eliminate missed steps increasing the success rates.

Does the 40 step plan work?  Glenn Steele Geisinger Health System’s CEO had the procedure done and it was successful.  Following the surgery he received an e-mail stating that 113 people had accessed his medical records during his stay, all authorized.  This is why they believe the 40 step plan works because everyone is kept in the loop.  Can you imagine coordinating 113 people for one patient?  This increases communication and keeps everyone on the same page.

They say this is their first process to be implemented but more will come.  I believe that any time you can increase communication surrounding the care of the patient it’s a true benefit.  When everyone is speaking the same language, following the protocols it means that there is less confusion, and that means less chances for the patient to be harmed.

It’s important that we continue looking for ways to increase access to healthcare.  If we can do this while still maintaining the highest levels of care so that fewer complications result in fewer deaths we’re ahead of the game.  When all eyes are on the patient that’s good.  Don’t get me wrong, I understand that all eyes are on the patient and the pocketbook, but for now we’re heading into uncharted territory.  Let’s sit back and see where the next leg of the journey takes us.

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

Caregiving Can Be Lonely

Welcome to Caregiver Friday!

Over the past couple of weeks I’ve attended many conferences on specific diseases.  At each conference I’ve had the opportunity to speak with caregivers of all ages, both male and female and the theme that seems to be universal is loneliness.  Caregiving for someone who is sick or injured is very different than the care parents provide for children.  We attend to every need of an infant because they haven’t learned to care for themselves and developmentally they aren’t capable of caring for themselves.  It’s a different story for someone who is ill.

When caring for someone who is ill your caring for someone who knows and understands that there has been a change and not for the good.  They battle the feelings of sadness and grief as a result of their diminished capacity to care for themselves.  It’s very different when someone is conscious of their dependency and an infant who relies on it because they don’t know any different.

As the caregiver your stuck in between two worlds, the land of the sick (the person you’re caring for) and the land of the well (hopefully the place your dwell).  How do you reconcile these two worlds?  We know that friends and family will support us in the short haul, but what about the long haul?  What if an illness isn’t curable and you’re going to be providing support for many years to come…who will hang out with you that long?

Caregiver networks are crucial because they will be there for the long-term.  Finding ways to connect with someone who will understand the dilemma of being torn between two worlds validates your experience and helps with perspective.  On a personal note, my father-in-law had a massive stroke following open heart surgery 19 years ago.  My mother-in-law cared for him at home for the first nine years and then out of necessity we as a family found a nursing home that would more adequately tend to his health needs.  Why am I sharing this with you?  My mother-in-law has never found a network.  Aside from her three children, she has shouldered this burden on her own.  Her life literally stopped the day he had the stroke.

As the years have gone by my mother-in-law has increasingly retreated into a world of one.  She didn’t create a network and over time her world has become smaller and smaller.  It’s been a devastating things to witness because she has so much to offer the world and the world will never benefit from her gifts and talents.  She’s lonely on many levels.  Her expectation of what her life would be when she married my father-in-law hasn’t worked out the way it was intended.  She never expected to spend the last twenty years with someone who is so different than the man she married.

My hope for you is that you don’t retreat into a world of isolation.  It’s important to your own well-being to keep connected to the land of the well.  It’s vital to your health that you still find joy in the world even when the person you’re caring for isn’t at their best.  I’ve tried to talk with the family about the self-imposed prison my mother-in-law has created for herself.

How do you combat loneliness?  How do you stay connected?

Posted in coping with chronic illness, coping with life threatening illness, Personal Conviction

Oprah and the 140 Pound Tumor

On yesterday’s program Oprah had Dr. Oz to discuss what made news in medicine over the summer.  The big story (pardon the pun) was the woman with the 140 lb. tumor.  She lived outside of a metropolitan area and had been seeing her doctor for twenty years.  She was putting on weight that the doctor wanted her to lose but it didn’t happen.  Finally, after a couple of years they find that the weight is a tumor.  It has to be removed surgically in pieces, kind of like the de-installment plan.  The sad part of the story is that the tumor is malignant.

Dr. Oz tried without judgment to express his concern, at this point mainly to the viewership, that we’re all responsible for our own health.  If this woman was trying but couldn’t lose weight and the doctor didn’t have any ideas, move on and get a different doctor.  Many would argue that she didn’t want to know what was wrong and in the end it will probably result in her death.  So what’s the take-away from the segment?  They asked the woman what would she like to share and her response was get a second, third or fourth opinion if necessary, but don’t just sit back waiting for things to happen.

The truth is that economics and geography play big roles in our healthcare system.  Underserved communities often lack the continuity of medical care with doctors rotating in and out.  With gasoline at $4 a gallon traveling to urban centers may not be feasible, but the trade-off is possible death (of course I’m not talking about routine healthcare, but certainly when a specialist is needed or a diagnostician with cutting edge technology is required, find a way to get there).

We have to be more conscious about our bodies.  It’s important that we become intimate with our bodies, not in a sexual way, but as if you are having a relationship with your body.  You want to know every freckle, fold and mole.  It’s also important to turn up the volume on your intuition.   When you know something is wrong don’t stop asking the doctor to keep looking until you find a plausible and acceptable answer.

Don’t cut your life short by turning a blind eye to your body and your health.  Don’t look at medical providers as adversaries, but as partners in your healthcare.  Prevention is best, but if that’s not possible catching things early (before they weight 140 lbs.) will most likely save your life.  What’s your life worth to you?

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

The Importance of Specialists

I attended a conference on Multiple Sclerosis this weekend presented by the Colorado MS Society and Healthsouth Rehabilitation hospital.  The turn out was small, but those who attended certainly received lots of great information.  The speakers included a neurologist, a social security representative and an attorney who specializes in appeals for disability.

At the start of the day I was speaking to a representative from a drug company when a woman approached the table looking for information.  She shared that her mother has late onset MS and she was here to gather information.  When asked about her mother’s medical care the woman responded that her mother was seeing an internist.  My eyes and the eyes of the two drug reps grew wide with amazement, shock and bewilderment.

I believe that General Practitioners and Internists are great for two things: the every day illnesses we face like colds, flu, infections, more common illnesses and in addition I believe they are terrific diagnosticians.  It is their responsibility to continue asking the questions so that a proper diagnosis can be made.  This does two things: gets the patient the proper care and allows the physician to know there is another provider they can partner with on this particular patient.

It is crucial that once you receive a diagnosis for a chronic or life-threatening illness that you get a referral to a specialist.  The specialist should have a background in your disease and treat many patients with that diagnosis.  The specialist has additional training and keeps informed on the latest treatments, studies and clinical trials for medication.  They are the experts and for any specific illness a specialist is your best chance at health and wellness.

The neurologist who spoke at the conference this weekend shared that she has 500 patients with MS in her practice.  She’s connected to a community that focuses on options for MS patients both clinically and in the arena of social services.  One of the keys to being a good health advocate is getting the best care available to you.  This is not the time to pick a doctor because you’ve been seeing them for ten years.  Your health status has changed and this is no time for allegiance, but to find a provider who understands your disease process and helps you make strides toward wellness.

Don’t settle for less than expert care!