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

Gaining a Sense of Control

Welcome to Caregiver Friday!!!

Let’s face it, we all have control issues.  Can you think of anything greater than everyone in the world responding the way you want them to?  Wouldn’t life be so much easier if all you had to do is pass out pages of a script for everyone to read from so the plot moves along and there’s no tension?  It would be great, but it would also be boring.  So how can we gain a sense of control without becoming control freaks?  After all, caregiving or being a wellness partner could become a slippery slope to the command center of the “Kingdom of Control”.  Now you may be wondering why I say that when it often feels that you have absolutely no control over the situation…that’s the conundrum.

So what do you have control over?  The only thing you have control over is how you respond to each and every interaction.  You have no control over whether the patient takes his or her medication.  (I’ve seen too many patients “cheek” the medication.  That’s where you give them the pill, they hide it on the side of their cheek till you leave and then they spit it out)  You have no control over whether the patient eats or drinks.  You have no control over the patient’s desire or wish to get well.

The question for you, the caregiver, is how will you handle each and every decision.  This is both on the intellectual/factual level, and on the emotional and spiritual level.  You may be surprised that they all don’t match, but that’s one of the things that makes us human.  It’s about isolating each experience and evaluating it for its own merit.  The tendency is to collect them and then when they you can’t hold any more having a melt down because of overwhelm.

This creates an interesting discussion.  If you take each experience separately, make a decision and move on do you have the consciousness to consider that experienced completed.  That means not taking the emotional baggage from one experience and super-imposing it on the up and coming experience.  This could be or possibly is one of the greatest spiritual practices monks around the world are trying to achieve, so you’re in good company.

It’s really about keeping your side of the street clean.  Clarity can be freeing and that’s how you gain your sense of control.

Do you have an instance you’d like to share?  How do you assume a sense of control as a caretaker?  What have you learned that you’d like to pass on to others?

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

When is Uncertainty a Blessing?

One of the things we hope for when we go to the doctor is a definitive diagnosis.  If you’ve ever looked at the amount of information med students need to learn, book learn, in two years is utterly amazing.  Is it any wonder that even through years of education and training they don’t always have all the answers?  Over the years of going to doctors I’ve revamped not only my expectations of my doctors, but I’ve reformulated my view of their stance in the world.  The truth is that doctors are only human.  They possess all the character flaws the rest of us possess, but they are trained to keep ignorance at bay so that we presume they have all the answers.

One of the things I’ve looked at is what happens when a doctor says “I don’t know”.  Many of you may find that statement scary because the doctor should have the answer.  I only get scared when they don’t tell me they don’t know and go on treating me for a diagnosis that is unsure.  I’d rather give my doctor the elbow room to tell me they didn’t know, without shame or judgment, as long as they are egoless enough to refer me to another doctor that may have more experience or conducts research on people with specific symptomatology.  It’s when the ego gets in the way that we’re all at risk for missed diagnoses.

If you have a doctor who says “I don’t know” and “I’d like you to see this doctor” then you should give them a standing ovation because they have potentially saved your life without dispensing any treatment.  They are secure in their knowledge and skill to understand that no matter our expertise we all have limits.  Understanding and honoring those limits can definitely mean the difference between life and death.

Have you had an experience where a doctor exhausted their own knowledge and sent you on to someone else?   How did it work for you?  What’s your relationship like with your original doctor?

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

Lowest Common Denominators

The truth is that those who are well and those who are facing a chronic or life-threatening illness share one big secret.  We all suffer from death anxiety.  It’s interesting because the Ancient Greeks felt that to live “the good life” you had to meditate on your death.  This year Irwin Yalom came out with a book titled “Staring at the Sun”, talking about death anxiety in our culture.

Does meditating on death for those who are ill hasten the inevitable?  When we meditate our death do we speed things along when we’re in the midst of fighting for our lives?  That’s not the reality and not even what the Greeks meant when they spoke about meditating on your death.  They were truly focused on generativity, what you leave behind in this world and what you stand for while you’re still in this world.

Throughout last week’s meditation sessions we each had the opportunity to reflect not only on our lives and what our lives mean to us, but having the opportunity to get to know ourselves at the deepest levels.  Kim Rosen,, led us through an amazing array of meditations based on poetry.  She provides workshops on the transformative nature of poetry and she does this with grace and passion.

Until I went back to school I never read poetry except for those poems required in high school english.  I’ve always been a huge music lover and have found that poetry is musical.  It has a rhythm and can provide an inner melody.  Depending on who you read will determine the existential questions that are front and center.  I’m fascinated by Mary Oliver.  A poet who lives in New England and truly takes on the question, and then challenges the reader about what will each of us do with our one precious life.

Be surprised…go pick up a book of poetry and just thumb through the pages.  You’ll begin an inner dialogue that will inspire and challenge you to take a position on life and death.  It puts into words the feelings we all have in an eloquent and flowing message.

Share with me your favorite poems and poets.  Maybe we could create a resource for meditation and a dialogue about meditating on our death.

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

Pay Attention to your Priorities

We’re in the midst of a very big election.  Don’t worry, I am not about to spend your precious time on election details.  As we get ready to vote, we all make decisions about which issues are a priority for us and our families.  We determine what we want the focus to be of the incoming administration.  We debate, even fight, over what’s “right”, but truly that’s personal in nature.  So where am I going with all this?

While watching Extreme Makeover Home Edition, the story centered on a little boy named Job.  Job was diagnosed with leukemia at age four.  After beating the leukemia he contracted a damaging pulmonary virus and he needed a double lung transplant.  Following the transplant he’s on medication that has caused cataracts in both eyes and his body has swollen beyond recognition.  He’s not in a wheelchair, but the amazing thing is he’s a regular 10 year old.  He is a hero in his town and after last night’s show across the country, but the biggest lesson came from his mother.

She made a statement, “Appreciate those things that most people take for granted”.  It may seem simple, but it is one of the most powerful statements I’ve heard in a long time.  The truth is that those who don’t face a health challenge take things like what they eat, the amount of sleep they get and their ability to move freely as if it’s a right, with no strings attached.  It’s different for those of us facing a chronic or life-threatening illness.

For some sleeping through the night is triumphant.  (As someone who was awake every hour on the hour last night I am very cognizant of sleep today).  Maybe it’s eating a meal and not having it upset your GI tract.  There are many things that when they happen are big news…so it’s important to pay attention and cherish those moments.  Don’t let these moments go by as the absence of something bad or challenging.  Take that full night of sleep as a gift and pay attention to how you feel when you wake from that peaceful slumber.

Small things are not small when we give them attention.  They can be the one factor that gives us a little hope that our body remembers the days prior to the illness.  The goal is to have more and more of those moments, but till you do, take each one as a nugget of hope and remember it’s not a small thing, no move toward wellness is small.

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

How Do You Walk in the World?

Welcome to Caregiver Fiday!!!

So I’ve been giving some thought to how you walk in the world as a caregiver.  There are so many opportunities to display different modes of operating and I will talk about some “archetypes” over the next couple of weeks to focus the discussion, but today I have two visuals.  Do you walk this world as a duck or a sponge?

Let’s get real for a moment.  After you read this entry, take a couple of minutes to really reflect, even meditate on this question.  First the duck.  As they say, “water rolls off a ducks back”.  In people terms that means that you don’t let anything get to you.  You may present as stoic to the world, unphased and unnerved.  Others may view you as a bit cold or uncaring, even though that’s the furthest thing from the truth.

Then we have the sponge…pick any color you want to be.  The sponge absorbs every nuance of emotion.  They are the ultimate receivers of the world and are often overwhelmed by their lot in life as a caregiver.  They are so empathic that it takes over their emotional world.

Which is better?  That’s really not for me to say, but for you to understand which works better for you given your own emotional composition and your personal circumstances.  I think in a perfect world, the ideal would probably be a combination of the two.  Having the capacity to let the inane slide past you and absorbing the important aspects of providing compassionate care to another. 

Trust me, balance is not easy to achieve.  It takes a lot of practice, maybe even takes a practice (more to be revealed).  The secret to any relationship is not to be the iron maiden and allow nothing in, nor melt into a pool of emotional mayhem leaving everyone without a safety net.

How do you balance your roles as a caregiver?  Do you feel balanced or do you fall more toward one end of the continuum?

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

It’s Time to Pull the Plug

Don’t get alarmed, I’m not talking about asking you to disconnect life saving devices.  I’m asking you to pull a very different kind of plug, the plug on your emotional bathtub.  It’s time to drain the tub and see what lurks beneath the water.

Facing a chronic or life-threatening illness can create a lot of emotional crap.  Just like in any other standing body of water, when you allow things to fester bad things begin to grow. 

At first it may be fun to be in the tub, soaking and relaxing, but you wouldn’t sit in there for days or months, would you?  The same is true for your emotions.  If they sit there unmoved, allowed to increase their negativity over time it can be devastating.

I’m a firm believer in rituals because I feel that symbolism and action combined are a powerful pair.  Create some type of ritual or literally fill a bath tub and pull the plug with some type of intention or prayer.  No matter the path you choose, watch the water or the emotional muck drain and feel that relief that comes with pulling the plug. 

If you give yourself permission and the opportunity you’ll feel lighter both emotionally and physically.  When facing a health challenge, do you really want to be lugging around more weight than necessary? 

How have you pulled the plug and let the negativity drain?  I’d love to hear your story.  I support you in this and I encourage you to let me know if I can be of any service in this endeavor.

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

Spending without Ending

Don’t leave the site…I’m not going to talk about money although it is on many people’s minds and causes stress.  I’ll leave that for another post.  I am talking about the fact that any form of energy can be spent including our own healing energy.

Take a moment and think…Where am I spending without ending?  Maybe you aren’t getting enough sleep.  Maybe you aren’t eating right.  Maybe you haven’t been as diligent taking medication (I’ve certainly fallen into that category at various times in my life).  Every time we spend we are racking up bills and eventually we’re going to do one of two things…pay it back or declare bankruptcy.

What would bankrupting our bodies and our health mean to you?  In the money world there is a huge blip on your credit rating for seven years, but do you think you can get off that easily with your health?  What’s the real cost of spending without ending?  How many more hospital visits will you have and will they be longer as a result of your personal energy spending?

The idea that there are no free lunches is true.  Every action has a consequence and unfortunately when our bodies are the collateral we can be in big trouble.  Let’s start a revolution for those facing health challenges and find a buddy who you can share your wealth with, meaning that you share of your gifts and talents.  Each of you can also encourage each other to put money in the emotional and physical bank for a rainy day (Just don’t invest with the idiots who created the financial crisis).

Create a persona energy budget for yourself and try and stick to it.  I’m realistic, we’re human, we’re all going to overspend, but keep it within limits.  Don’t let your energy system and your health have the “big crash”.

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

What are you Curious About?

It’s one thing to know that you have an illness, but do you know about the illness?  I’m not talking about how to get rid of the illness, I’m talking about the illness/disease itself. 

On a personal note, I was diagnosed with an auto-immune disease at the age of 12 and unfortunately I didn’t know the ramifications of the disease process.  I knew my grandfather had the same disease and that scared the hell out of me…but I knew one thing, it wasn’t going to kill me.

It wasn’t until I was in my late twenties that I began to take an interest in my illness.  Not a morbid kind of curiosity, but a “I want to know more about this ” out of innocence curiosity.  I’ve been blessed with the best doctors in the world.  They are not only knowledgeable and compassionate, they are always on the lookout for the newest and greatest treatments and most importantly; they are always willing to dialogue with me.

I’ve used my medical team to understand the biology of the disease and how the treatments interact with the illness.  I follow up on website related to my illness and through those avenues I receive articles and more opportunities to learn.

I first had to not be afraid of how the disease would impact my life.  I had to push through the fear about the obstacles and know that I’d find the internal resources to get over the hurdles.  I also had to find medical providers who would share with me what they knew beyond the treatments so that I could reduce my anxiety about what would come next or what the long term effects of treatment would be.

Finally, I have to keep in the curiosity mode because, as you know, science and technology are changing every day and that’s important for restoring hope.  I hope you become curious about your illness beyond the catastrophe side of the disease and believe it or not the mind-body connection will respond.

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

Life on Autopilot

Yesterday I drove from Denver to Santa Fe, about 570 miles.  I got an early start so there wouldn’t be too many people on the road and I was right!  Once I got beyond the suburbs, down to the more rural areas I put the car on cruise control and down the road I went.  It was a straight ride down I-25.  It got me thinking about when every day is about taking medication or going for tests, it’s easy to put life on autopilot, but what happens when we remove ourselves to that go along for the ride mentality?

Keeping things systematized is how keep structure in your life and that most likely reduces anxiety, but does it dull your other senses?  How are you keeping engaged?  Are you still involved in activities?  I can tell you that if you enjoy an activity keeping up with it will boost your immune system.  It provides you with joy and that’s always good for the cells.  It gets you thinking about your life as it related to your life before the illness, that’s good.  Depending on the activity it keeps you connected to others.

Autopilot or cruise control is great for vehicles, but in life, there needs to be a balance between turning over responsibility and “going for the ride” and being so entrenched that it’s overwhelming.  If you have any ideas I’d love to hear them.  Share how you stay engaged, but keep the medical aspects of your journey to wellness within the bounds of structure.

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

Fear the Fear

Last year I went back to school…it was time.  I’m working on my PhD focusing on “Art as a healing modality when facing chronic and life-threatening illness.  I only tell you that because I had a realization last night while writing my paper for the up and coming class.  The class is on Wisdom and Civilization.  Throughout the paper I’ve been writing about the mess the United States is in economically and began thinking about fear.

It’s impossible to turn on the television and not be scared by the news.  If that weren’t enough we’re in the midst of a heated presidential election and the television ads would make you want to set up home in the United Nations.  So how is it that we’ve come to fear the fear more than the situations we’re facing in the world?

Fear is the one thing that will generally derail all the hard work you put into getting well.  I can understand fearing the illness because you may feel that you’re fighting something that not only has a mind of its own, but seems to have the resources to put a good fight.  But when we begin to fear the fear, we’re challenging ourselves to engage in a conflict that is self-made.  We invoke fear in others by telling them horror stories of the disease process or of treatment.  We invoke fear talking about the financial impact of an illness.  We invoke fear when we believe it’s punishment from a Supreme Being for something we did wrong.

Fear is not the enemy.  Fear is not the arena to put your resources.  Fear is a distraction, a large one I’ll admit, but still a distraction.  Being fearful detracts you from putting your full attention on health progression.  Don’t give in to the imposter, challenge the real thing…the illness.