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

Ever Ask Yourself…How Did I Get Here?

Welcome to Caregiver Friday!!!

I believe the title of the entry says it all.  I know during the marriage ceremony we all pledge to take care of someone “in sickness and in health”.  I wonder if we really believe the “sickness” part would or could ever show up and then suffer buyers remorse.  Obviously as we age the idea of diminished capacity of some sort will arrive, but it’s the unexpected illnesses earlier in life that ambush the lives of not only the patient, but everyone in their family.

I can go on about taking care of yourself emotionally and physically and I believe that’s important.  However, what I really want to focus on are the “dark” thoughts or the “shadow side” of being a caregiver. I’ll give you a for instance.

When I used to run divorce groups I would ask each member to tell me a revenge fantasy.  They would emphatically say they didn’t have any ill will toward their ex-spouse.  I would ask them to think about it and come back to group the following week and see if anything changed.  Oh what a difference a week can make.  The revenge fantasies were detailed and cathartic.  The caution is to remind each person there are only fantasies and in no way, shape or form be carried out, but simply released as a way to express disappointment, despair, betrayal or a host of other emotions.

So let’s be clear, I’m not saying to have revenge fantasies toward the person you’re caring for, but there is an alternative.  It’s important that the gremlin thoughts be acknowledged and released.  Festering won’t help your compassion factor.  The other thing is that I was taught a long time ago, “you get out of something until you’ve been totally in it”.  This is my suggestion.

Take some time when you aren’t responsible, on call as a caregiver and think seriously about the impact the illness has had on your own life.  Take the time to acknowledge the loss and the shattered assumptions about what life would be like if you both were healthy.  I’ve mentioned in the past that the life you and the patient are living are a “new normal”.  Give yourself permission, or let me write you a permission note that says if this is the path my life is taking, how can I make it the best and most memorable life ever.

I remember a story years ago on Oprah with a woman dying of metastatic breast cancer.  She had young children and was concerned she would be forgotten.  She created videos for every important occasions in the childrens’ lives i.e. birthdays, confirmation, prom, wedding, etc and her husband would make sure the kids got these videos over the years.  Obviously that’s on the patient’s side of the equation.  On the caregiver side is the ability to understand that no matter how much control you’d like to assume, control is finite if not a fantasy.

Trust me, this is no way a reinforcement for “God doesn’t give us more than we can handle” or “what doesn’t kill us makes us stronger”.  I’m not into the cliche end of caregiving.  I do believe in acknowledging your time, effort and commitment to a process that has no definitive end (for some).  It’s knowing that when the times get tough, the tough honor their emotions and know that angry thoughts or frustration don’t make you a bad person, they make you human.  The ability to feel the entire range of emotions is what keeps you in balance.  It provides you with the reality check so many in the trenches of illness rely upon for their sanity.

By having a full range of emotions you’ll be able know how you got where you are.  You got here based on your values, your love, your commitment and your compassion for another human being.  You got here because you hold an Olympic Torch lighting the path for healing.  You got here because you’re human.

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

Flu Be Gone!

It’s that time of year when every doctor’s office, pharmacy superstore and grocery store are beginning to set up their stations for flu shots.  There is still some debate over the flu shot or influenza vaccine, but there are certainly some things to consider.

(Disclaimer:  I am not a doctor, nurse, physician’s assistant and in no way, shape or form am I dispensing medical advice…these are my personal views based on my personal experience and information received from esteemed medical professionals)

I remember about fifteen years ago friends of mine were getting the influenza vaccine.  I decided that year, even though I had received it previously, to forgo that year’s vaccine.  I took a trip to visit my family in early January and on the plane began feeling ill.  Unfortunately, I spent the next three weeks in bed with one emergency room visit for severe dehydration.  Needless to say I’ve been in line every year since then to protect myself.  My medical provider sends out preprinted forms because they want to encourage me to get my vaccine since I’m in a high risk category.

So what’s the truth about the vaccine.  First and foremost, please consult your doctor before venturing out on your own and just getting the vaccine.  Many who are considered high risk, including all of us with chronic and life-threatening illness are encouraged to get the vaccine.  The one big caveat is if you are truly deathly allergic to eggs.

Last night I heard a microbiology lecture by Dr. Christine Nyquist, head of pediatric infectious disease and The Children’s Hospital.  Her recommendation is to get the vaccine.  The bacteria from someone sneezing or coughing can sit on a plastic or metal table for up to 48 hours.  I know I don’t clear my entire house every 24 hours.

As the weather changes and we become more aware of the impact the winter months can have on our health it’s important to take this one step in being your own health advocate, check to see if you should get the influenza vaccine.  You could be saving yourself needless health complications and by avoiding the flu you can devote your energy and focus on your journey to healing.

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

What Grade Did Your Hospital Receive?

According to HealthGrades the death rate at top ranked hospitals is 70% lower than those at poorly ranked hospitals.  Did you hear me….70%.  Are you willing to be at risk if your hospital isn’t at the top of its game?  Can we as consumers begin a backlash against hospitals that aren’t making the grade?  I don’t know about you but I’d be willing to travel many miles to insure that I had a greater chance at living following a hospital stay.

Unfortunately geography seems to play a role in the standings.  Are you in a desirable geographic location for survival or should you start praying now?  If you live in the East North Central region (Illinois, Indiana, Michigan, Ohio and Wisconsin) you’re in luck.  Your region had the lowest overall risk-adjusted death rates.  Unfortunately if you live in the East South Central region (Alabama, Kentucky, Mississippi and Tennessee) then you may need more than medical talent to come out of the hospital still breathing.  Of course I’m exaggerating a bit, but why are such discrepancies even tolerated in our country.  Could it be that money is at the root of all of this?  Do you think that healthcare for those of us with a chronic or life-threatening illness should take this into account when selecting elected officials on November 4th?

According to the article “…that if all U.S. hospitals performed at the level of top-rated five-star hospitals, 237,420 Medicare patient deaths could potentially have been prevented from 2005-2007”  What if your loved one could have been one of the more than 200,000 potential people saved by better care?  Did I get your attention now?

Dr. Samantha Collier, chief medical officer of HealthGrades said “Until then (the time when all hospitals are at the top of their game), it is imperative that anyone seeking medical care at a hospital do their homework and know the hospital’s quality rating before they check in”.  Her word “imperative” should catch your attention.  This is not a suggestion, it’s a marching order.  She’s telling you, yes a doctor is giving you inside information, that to increase your chances of survival when treated in a hospital, you have to do your homework.  Doctor’s will not tell you this information.

What’s the first thing you’re going to do after you read this article?  You need to go to http://www.healthgrades.com and find out how your hospital rates.  Don’t wait any longer, you’ve already waited too long.  Now you have this information, that means it’s your responsibility to make sure you get the best hospital care possible.  Don’t say I didn’t tell you!

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

Is Vitamin D at the Root of All our Problems?

A few months ago I wrote about the impact of Vitamin D deficiency on breast cancer patients.  As I’ve continued my research I’m finding that it’s not just breast cancer but a host of illnesses that are at the mercy of Vitamin D.  I began looking for more clues when it was announced that the pediatric community was recommending doubling a child’s Vitamin D intake for healthy growth.  In order for a child to double their Vitamin D intake it will require supplements.

So what have I learned since this announcement?  The Archives of Neurology reported a study that compared Parkinson’s patients, Alzheimer’s patients and healthy patients on the Vitamin D continuum.  The study reports that Parkinson’s patients had the lowest levels of Vitamin D.  Obviously this will require more study, but this is the kind of information that gives researchers a clearer picture of what’s happening inside the body and what could potentially change the course of a disease.

If that’s not enough let’s move on the next disease and the Vitamin D connection.  Many children with Cystic Fibrosis (CF) have a Vitamin D deficiency.  This is the case even though they are receiving restorative Vitamin D doses and yet they are still below adequate levels of Vitamin D.  What impact is this deficiency having on treatment and on quality of life, not to mention mortality rates?

Are more diseases look at the connection between Vitamin D and illness and consistently finding that we are suffering from Vitamin D deficiency, wouldn’t you begin to make checking Vitamin D levels a priority?  What other diseases are worsened or putting patients at treatment disadvantages because they are Vitamin D deficient?

Are you willing to talk to your doctor about your Vitamin D levels?  Could it improve your health?  Put it on your list of questions for your next doctor’s appointment…let’s keep ahead of the curve.

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

Become an Action Hero

It would be great if we could get a call on a special phone, go into a closet and come out with a new and improved persona.  If nothing else we’d get great costumes.  You may not have a secret identity, but you can become an action hero.  Becoming an action hero requires that you stop thinking and start doing.  It’s not enough to think about the changes you want to make in your life and start doing it…take baby steps if necessary but don’t be stuck in analysis paralysis.

Small changes can make a big difference.  If you’re looking at changing your eating habits and the idea of a diet (to improve coronary function, reduce cholesterol, reverse diabetes) then start modifying your food choices.  Men’s Health Magazine always has a feature titled “Eat this, not that”.  They will often compare similar food items and tell you which is the better choice.  Having the information, not calling it a diet and feeling a sense of control improves your chances at making long term modification and healthier choices.

For exercise maybe you don’t have to go to the gym.  Bob, the trainer on “The Biggest Loser” recommends that when you go to the store or mall, park as far as possible from your destination and walk.  This doesn’t require long-term gym memberships or expensive equipment, it takes being conscious of where you park.

When it comes to rest many stopped taking naps when they were babies.  Let me tell you how I feel about naps.  I believe they are one of the most self-indulgent actions on the planet and I fully support them.  Now it may not be possible to take a nap during the week, but look at the weekends.  The truth is you can’t ever make up for lost sleep.  Sleep is a perishable commodity, once it’s gone it can never be recovered.  But you can give yourself the advantages that come with sleep, like rejuvenating your body, giving yourself the opportunity to reduce stress and anxiety and to renew your enthusiasm for the day.

Small actions can have big results.  Change is difficult and if you take it in small steps the big actions are sure to follow.  If you need encouragement create an Avatar (comic like character) with you as a superhero, print it out and marvel at all you can accomplish.

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

Duet

Welcome to Caregiver Friday!!!

I’m going to take things from a different angle today because as you’ve found out nothing about illness stands alone.  Today is my 10th anniversary and to celebrate I want to share with you how illness and caregiving within love relationships can get derailed and how to make sure everyone stays on track.  First remember that you, the caregiver, are a co-patient.  Everything that the patient experiences gets translated into some force that impacts your life as well.  In yesterday’s entry I wrote about endurance and as a caregiver, you too need to build your level of endurance.

The three things most couples struggle over are: Communication, Sex and Finances.  It’s a universal so don’t feel bad if you’re struggling with any of these, you’ve got plenty of company.  The question is not do you struggle with these issues, but how will you resolve these issue.  I’m going to talk about three areas that couples facing a health challenge need to consider to keep moving forward with their relationship.

Communication is obviously the biggest factor that comes in to play between couples that aren’t facing a health challenge so can you imagine how that gets amplified when you throw an illness in the mix.  The stress level is not increased arithmetically, it’s increased exponentially.  Fear is at the heart of the communication breakdown.  The patient is afraid if they voice their concerns the caregiver will leave.  The caregiver fears that being honest will kill the patient (both literally and figuratively).  So let’s be honest, things will be said that aren’t pretty or nice.  The question is are they true.  I was writing a paper for school and I found this quote in a book about healing trauma, “Intimacy comes with honesty, not from ‘making nice’.  I’m not suggesting that you kick someone when they’re down, but clearing the air is what keeps relationships alive and well.

Communication breaks down when one or both members of the couple bury their fears, even though both of you are well aware that they exist.  For instance from the patient’s side they may be wondering : Will I be a burden to my partner?  Will I be able to provide for my family?  The caregiver may be thinking: “I don’t know if I’m strong enough for this?  or “This isn’t what I signed up for!  Both are wondering how will you ever get out from under all the medical bills.  Pretending these thoughts don’t exist is ridiculous…the question is how do you deal with them.

You can obtain the services of someone who will provide a safe environment to explore these avenues together, whether it be a psychotherapist, coach, or spiritual director doens’t matter.  It should be someone you trust, and who understands these particular issues.  You may choose not to do the exchange verbally, but do it in the form of journaling.  Rose Offner has a book Journal to Intimacy.  The book is divided into sections relating to the relationship and it allows each person to write their thoughts in the journal.  Each person then reads the response and can write a response of their own.  This will only work if you both commit to being a part of that journey.

Intimacy is also a big issue in relationships.  Let’s say it out loud…S-E-X.  Yes that’s right, couples have sex but during times of illness that may not be a part of the picture.  Don’t confuse love with sex and don’t confuse intimacy with sex.  Intimacy is about the bond between two people.  It’s about being able to share hopes and dreams and fears.  It’s about being to feel free to share difficult things with your partner and know that how you are viewed by them won’t change.  I know it’s scary, but it can be done and it is important to maintaining the relationship.  Intimacy is about connection so find ways to connect.  Instead of sex, maybe it’s about rubbing your partner’s feet (not me I don’t let anyone touch my feet).  Maybe it’s about making the other person breakfast in bed.  Remember that means the person with the illness can make the caregiver breakfast in bed ( we know the person with the illness unless they are in the last stages of illness will have good days and they can offer these loving gestures to their partner).

Let’s see we’ve talked about communication and sex…anyone up for politics or religion? (just kidding)  You will each gain strength from the other.  Caregiving should not be about obligation, but love and compassion.  Love and compassion should also be returned from the person you’re supporting…don’t let things get so out of balance that you feel you have nothing left to give.  So I guess “Balance” is the third side of the triangle.  If things get to out of balance bringing it back into balance can be more painful then some treatments.  Become intimate with your emotions.  Know when you’re feeling out of balance and share that with your partner.

Communication, Intimacy and Balance are three key aspects of maintaining a healthy and loving relationship through a health challenge.  From personal experience I can tell you that opening up about your fears is not easy, but it makes the relationship stronger.  It helps you build a foundation of trust and mutual respect.  Look out for each other’s health and know that I’ll say a prayer for you and your relationship in honor of my anniversary.  Thanks for sharing this special day with me.

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

The Endurance Factor

Athletes at all levels know the importance of training and practice.  They are engaged in routines that for months on end so they will be at their peak performance before the season begins.  Unfortunately, those facing a health challenge don’t get that luxury.  When facing a health crisis/challenge you receive the diagnosis and a treatment plan is put in place.  For many the beginning of treatment is within days or weeks of the diagnosis, so how do you prepare yourself for the journey.

The old saying that life is not a sprint is a marathon is true.  Every day we are faced with challenges and as we learn we can utilize the knowledge to make the next leg of the journey easier.  How do you develop endurance to make it through treatment when you have no basis of comparison for an event of this magnitude?  You chunk it down into parts that are manageable.

The 12-step programs talk about one day at a time.  I worked in an outpatient drug and alcohol treatment facility and one day at a time is important.  What the general public often doesn’t hear is that if one day at a time is too big to wrap your arms around than make it one hour at a time.  Many treatments require successive days of treatment, we see that especially in radiation therapy.  The treatment can seem endless, taxing and overwhelming but only focusing on today’s treatment and putting blinders on to other days is step one.

Unlike the athletes that train for months, as a patient going through treatment you train in the moment.  During times of intensity call in your support troops.  Take as much off your plate as possible.  It’s the difference between a flood light and a spotlight.  The spotlight is focused energy.  By removing everything and anything that doesn’t serve your wellness in the moment allows you to focus all your attention, concentration and energy on getting through the next treatment and then stop.  You’ll have plenty of time to spend focusing on the next treatment the next day.

Endurance is not only physical, but our soul needs stamina.  When our stamina both physically and spiritually is depleted do what the government is doing and borrow some stamina.  It’s like pinch hitting, the support team can’t go for your treatment (although that would be great), but they can offer their energy when you feel like you can’t take another step.  This is for you and your primary wellness partner.  Accept the generosity of others to cook a meal for you.  If you need errands run let someone else pick up your dry cleaning.  If you want to relax let someone create a CD of your favorite music (if you don’t have an ipod), or maybe have someone read to you (one of Robin Cooks’ medical mysteries may not be your first choice).

Treatment is a marathon.  If you listen to the stories of marathon runners they will all tell you that there is a point in the race when they all hit the wall.  The point when their legs are burning, their will is diminishing and they are questioning why they ever started on the 26.2 mile trek.  Amazingly it passes and then the last few miles are run as the first few miles were run, with freedom, energy and determination.  Don’t abandon the race because you hit the wall.  Like in the movie “An Officer and a Gentleman” if you can’t find a way to go over the wall go around it or under, but get past it.

My thoughts are with all of you who are hitting the wall.  Know that you have what it takes to get to the finish line and I’m standing on the sidelines cheering you on as you continue your courageous journey to health.

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

What’s the Take Away?

I attend a lot of teleconferences regarding health, business and spirituality.  Most of the time I walk around the office with a headset and the phone attached to my belt.  At the end of the teleconferences most of the facilitators will ask, “What are you leaving with today?” or “What was the nugget you heard today?”  They do this so that you feel you get value from their call.  I’m constantly on the lookout for the nuggets that others get from their personal experience with a health challenge.

This morning I was watching Good Morning America and one of the co-hosts, Robin Roberts, showed a preview for her Nightline special this evening.  It shows what the past year has been like for her since her breast cancer diagnosis.  She remained on the air throughout her treatment and now is sharing her  nugget.

Last year Robin published a book that had 7 steps or 7 somethings, and as she went through treatment she would repeat over and over, it’s a chapter of my life…it’s not the whole story.  When asked if she would write a book about her breast cancer experience she said no because the cancer is only a chapter in the story.

So if you’re still reading this here’s the nugget she gave this morning, “Make your mess your message”.  The great thing about a phrase that so rich is that it’s open to interpretation.  How will your convert your mess into a message?  What message do you want to send to your family and friends about who you are as a person, beyond your illness?  Are you a role model and a goal model?  These are all things to consider in the big picture.

How will you make the mess (the illness) your message?  Share with me some of your ideas because I know you have as much if not more insight than Robin Roberts.

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

Pay Attention to the People You Meet

Yesterday I had the opportunity to attend a speaking event co-sponsored by the Lupus Association and the Arthritis Foundation.  The first speaker is a psychologist who spoke about attitude and illness and how they dance together.  The real inspiration came at the end of the program when a woman was introduced to speak about the importance of exercise when facing a health challenge.

Delaina was in pain throughout her twenties and thirties.  At one point she was urged by a provider to have a test to see if she had rheumatoid arthritis.  She had the first test done and indeed that was the diagnosis.  She went on for further testing and the rheumatoid arthritis was confirmed and so was a diagnosis of fibromyalgia.

The following day, after receiving the diagnosis, Delaina went to the nail salon and they were running behind.  While waiting she noticed an older woman walking in with difficulty.  Since the salon was running late the two women had a chance to talk.  Delaina asked the woman if she had arthritis.  The woman confirmed the observation and then Delaina shared her 24 hour diagnosis.  The woman turned away and began to tear up.  She turned to Delaina and said with regret, “I’m sorry”.

They continued the conversation and at the end of the conversation the woman offered Delaina two pieces of advice as a gift.  She encouraged Delaina to read the book, A Course in Miracles and to learn to love herself.  This “chance” meeting impacted Delaina immensely.  Delaina has many accomplishments including becoming a competitive body builder (that’s a whole other story).

At the end of her talk I went to speak to Delaina because her story was very inspiring.  I encouraged her to write a book to share her experiences and spread the message of hope.  I commented on the “chance” run in with the woman in the salon and Delaina said to me, “I’ve been having a lot of those ‘chance’ meetings”.  That’s the A-Ha moment.  Is it really chance?  Was she supposed to be in the salon to meet this woman?  Was it a good thing that the salon was running late so Delaina would have a chance to converse with this woman?  Is synchronicity a chance event?

Think about the people you meet every day.  Why are you meeting these individuals?  What message are you supposed to take away from the “chance” meeting.  How many messages or opportunities have you missed because you haven’t given yourself the gift of consciousness?

What “chance” meetings have you had and how have they impacted your life?  How will you work on your level of consciousness?

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

I Fired My Nurse

It’s important when facing a chronic or life-threatening illness that we maintain some level of control over our lives.  Being at the mercy of others isn’t good for the psyche.  Unfortunately some members of the medical community feel that they are always in control and we should act like marionettes.  The truth is that the medical community is in our employment…they work for us.  Here’s what happened.

I have lab work done on a quarterly basis.  My appointment was on Friday so I went to the lab on Tuesday and to my dismay there was no order from the doctor.  Tuesday afternoon I got a call from the nurse telling me that the order was placed and I needed to go since my appointment was Friday.  I shared that I had a already taken my morning to visit the lab and left because the order didn’t exist.  She kept telling me that it was my responsibility to get the lab work done before my appointment.  When I said I didn’t know if that would be possible, she told me the doctor wouldn’t refill my prescription before he had the lab results meaning I would run out of medication.  I was mad…very mad.

I went for my appointment on Friday and had a great visit with the doctor.  We talked about new tests I’d read about to determine how I metabolize medication; different treatment options and reviewed the labs that I was able to squeeze in.  He asked if I had any other questions and told him I had some concerns about how the office was run.

First I asked what happened to the nurse I’d been working with for six years.  He told me she had been promoted (that made me happy).   I told him I felt the new nurse was rude, argumentative and judgmental.  When I told him that the usual standing for lab orders didn’t exist he said to me, “We’ve talked to her about this and I guess we’ll have to talk to her again”.  For me the story has a happy ending.  I told the doctor that I didn’t want this nurse ever calling me or having anything to do with my healthcare.  He is willing to have the former nurse, now supervisor, be my contact person with the office.  I very grateful that he could hear my concerns without being defensive.  He looked for solutions that would make his office run smoother and offer me, the patient, great care.

We have rights as patients and one of those rights is to be treated with respect.  We are the CEO of our health and that comes with some responsibility.  It means that when we’re not getting what we want we have to be assertive and let the medical community know where the gaps in service exist.  I don’t want to struggle through my healthcare system, I want to devote all my time and attention on my journey to wellness.

Ever have a similar situation?  Please share so that we can build up a fountain of strength for those who need to take the plunge and assert themselves with their healthcare team.  It can mean the difference between life and death.