::: December 2005 :::

Q. Dear Frannie, I have a great deal of pain with interstitial cystitis.  I recently had a surgery, one of many, and my doctor wrote a prescription for pain meds.  He wrote it for 20 and not 30 which would have been a month's supply.  I did a stupid thing and changed it to 30 before I handed it into the pharmacy.  The pharmacy caught my change and called a detective, who then called me and my doctor.  I am going to be punished for this foolish mistake.

But, when I went to see my doctor for the followup appointment about my surgery, I was taken into the back office and told by a nurse that my doctor will no longer treat me.  I am 1 week post op, and I have no where to turn.  I thought doctors were not supposed to abandon patients, and if they didn't want to treat them, they were supposed to give them a 30 days notice to find a new doctor.  Here I am still with my stitches and I have no where to go and no doctor to turn to.  What can I do?

A.  From Frannie's point of view:  Life is definitely a situation of live and learn.  None of us were born perfect, nor do we live with other perfect human beings.  We all do the best we can most of the time, and when we don't, it is usually because of distractions in our lives that keep us unfocussed on our goals.  So please know in your heart that you are not a "bad soul" for making a mistake, move forward and learn from it, whatever lessons it teaches you.  In the meantime do not focus on your mistake, instead focus on how to move forward.

Pain is certainly a situation unlike most in our lives.  It takes over our world, clouds it and colors it with discomfort and dread about our future ahead, and the present moment. Nothing is more difficult to get through than moments of severe pain.  Nothing can cloud our judgments more than that time of feeling like we want the pain to stop.  In my book I talk about how this is.  Sometimes it can feel like an automatic reaction, wanting the pain to stop.

But we need to try and remain cognizant of what is right and what is wrong, and when we are in danger of losing our judgment because the pain clouds us so.  In dealing with pain it is good sometimes to have an advocate (friend or family member) speak for you when you are hurting beyond the point of reason, and to have this advocate contact a doctor for you or the nurse in the doctors office.  And if there is a mistake in the way the medication has been dispensed or with the pharmacy, it is better to have this advocate to help you think out solutions or work through these matters as well.  We just cannot always trust our reactions to fear of pain or to pain itself.

In the meantime, what has been done is done, and now it's time to move on.  I believe it unethical of your surgeon not to continue your care at least to a place where you are no longer acutely post-op.  At that point, given this recent history, find a new doctor, start as freshly as you can and do what is necessary to repair your mistake.  Hold your head high, and move forward from this, and continue to get your medical care that you deserve.  Each of us is equal in this life, and everyone is deserving of medical care.  Realistically I am aware that everyone does not get the care they deserve, but in a perfect situation, they should.

My dear girl, move on.  You have surely learned what is wrong and what the procedure should be in the future.  I am sure you will never do that again.  Anyone who does not allow you to overcome this mistake, does not deserve to be in your life.  Move forward. I wish you well my dear one.

A note from the Doctor's point of view:  Unfortunately your action abrogates that 'relationship' but your doctor should be willing to complete the post operative care.

-Joel S. Levine MD

Q.  Dear Frannie, I cannot accept what has happened to me in my life.  I used to be a high powered executive working for a large company.  Now, I have CFS and cannot even attempt my daily activities.  I have lost my identity and I feel like a "nobody".  How can I make peace with this in my life?

A. You bring up the big issue of acceptance, which is something that we all have to deal with.  When we become ill, our tendency is to deny what has happened to us, and believe each new day when we wake up that somehow we might be healed.  I remember when I first became ill, I would wake up each morning, look at the walls in my room and out the window, just as I always did before.  And then within minutes it would strike me....I am sick.  No one knows what is wrong with me.  Shortly after that I would rise from my bed engulfed in a fog that clouded up my life.  I spent the rest of the day, in and out of that fog, floating on what metaphorically felt like an ocean with rocky waves.  Waves of acceptance would hit me all day from behind, knocking me down.

What I mean by "waves of acceptance" is how we are able to go on with what we are doing and not have a thought about being sick, and then smack, we are hit with a wave of acceptance.  All of a sudden, the helplessness and fear of chronic illness becomes so overwhelming and we wonder how we will be able to cope.  These waves come over us for just long enough to make our hearts beat faster, add a feeling of panic, and just when you feel most overwhelmed, they disappear again for minutes at a time.  They can come as frequently as several times an hour, to only a few times a day.  But they are ever present for a period of time when accepting ones illness is the task at hand.

Just like with any adversity, these waves of acceptance can be quite uncomfortable.  They can take what was once a productive and fulfilling life and turn it into a life of panic and fear.  For a time while they exist, they can shake you up in a way that nothing else can.  And what do you do with them?  For me the saying of the simple phrase "And so it is" helped a great deal.

These waves of acceptance have a purpose.  They are slowly exposing your mind to the problem at hand.  Your mind cannot handle the implications of this new problem all at once.  And so, in waves you get bits and pieces of the problem, and begin acceptance with this information.  Over time, as your illness becomes your new reality, acceptance becomes easier, and you deal from a new place of reality.  These waves of acceptance are merely moving you toward a paradigm shift in your thinking.  It is your mind trying to deal with a new change in your reality.

Losing your identity and feeling like a nobody is all part of the process, especially if your self worth is wrapped up in "what you do" as it is with most people.  Most people function from a place of ego, and ego is strengthened by "what you do".  What you need to find out during this journey to wellness is "who you are". 

"Who you are" has nothing to do with what you do.  It is your unique inner essence.  It is what makes you a special human being.  It consists of your energies, your qualities and the light you shine on others.  It is truly who you are and cannot be affected by the things you do, or don't do anymore.  Your inner essence can be found by looking into yourself carefully.  Are you kind?  Are you compassionate?  Are you loving?  Are you honest?  By putting your qualities both good and bad down on a piece of paper and listing them, your essence will shine brightly enough for you to see it.  What are the qualities you have?  And the qualities you want to shed?  How about the qualities you would like to have?  You can be who you want to be.  Its a lot easier than most people think.  And it has nothing to do with what you do.

Once you are aware of "who you are", you are now dealing from a place of inner strength.  Then, having an illness is just a circumstance, and no longer your whole story.  Your story becomes who you are and who you love.  It becomes about strengthening those qualities and becoming proud of them.  You will then have something that no one can take from you and your illness can no longer weaken your mind.

Start from this place of inner strength and rebuild your life slowly.  If your task is to become well again, move forward and make that your goal.  If your illness is not treatable or curable, learn about it.  Find a good doctor, and use good treatments.  Yes, you may be disabled, but make the best of who you are from this experience.  Your whole world will no longer fall apart if you remain true to your inner essence.  You can cope with changes in what you do if "who you are" is not wrapped up in it.  If you need further help with this, please feel free to email me. I would be glad to help you.

The bottom line is that everyone is "somebody" and perhaps this journey is for you to discover, who you really are.  Who is your inner essence?  What makes you special?  And don't have it hinge at all on what you do.

Q.  Dear Frannie, I am a caregiver of a patient with a severe chronic illness.  My life has been turned upside down.  Now I feel the burden of being the only person who makes money, the only one to cook, clean and take care of the children.  We are in no financial position to hire anyone to help with any of this.  Aside from public school where my children are all day, I feel totally overwhelmed with my life.  Is this how the rest of my life will be?  Slaving all day at work only to come home to slave some more?

A.  Being a caregiver is one of the hardest things to do.  It involves taking on another life and making it as important as your own.  And if you have a busy life as it is, that leaves little time for yourself, your recreation, and reenergizing so you have more to give to your loved one. Respite or breaks from caregiving are a must.

You may or may not have chosen to be a caregiver but if you continue you are making the choice to do so.  You are giving a life, life.  What one who is sick and ailing worries about most is being abandoned by their loved ones.  And here you are by your loved one's side, doing all you can for them.  This is a special kind of love.

When one is coping with adversity and change, the best advice is to take things one minute at a time.  This path is there for a reason.  There are things to learn from it and you will find out what those lessons are through hindsight as the situation becomes more stable. 

In the meantime make the best of each moment.  Try to find loved ones and friends to give you moments away from the situation to gather your thoughts.  Do you have family or friends that can relieve you from time to time?  Try to set something up on a weekly basis so that you can look forward to the time alone to reenergize yourself.

My husband was in the same place you are now, at one point in time.  Now, almost 15 years later, he sees our family unit as strong and secure.  He sees that the love and the time he has given my children has given them the wings to fly.  He has seen that his support of me and love for me, has added to my inner strength.  And he has been able to rebuild his life to include the things that he was unable to do all those years.  Life has a way of teaching us important lessons about our priorities and helping us see things from a different light. 

If I can help in any way, please send me an email and I would be happy to help.  I think our favorite phrase when we were so very alone and abandoned by family was "this too shall pass".  And you know what?  It did.  Time and acceptance has a way of changing things, or if nothing else, the way you look at them. 

----------

Joel S. Levine MD, is from University of Colorado Health Sciences Center, in Denver, Colorado.  He is a Gastroenterologist and Internal Medicine doctor who deals with many patients with Chronic Illness.  He is a great patient, family and medical advocate. As always, I thank Dr Levine for this month's contribution.

~~~~~~~

Life-raft concept for the month: 

"We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread.  They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing:  the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way."  -Viktor Frankl

I would be the first to tell you all that the path we are traveling is not an easy one.  There are mixed views in the world of people who suffer from chronic illness and of chronic pain.  Some people are hardened by life and have little compassion for anything that is not happening to them.  Other people are so sensitized that they feel that protecting themselves from those suffering will somehow keep them from the same fate.  Then there are those who think they know what we feel because of a shortened version of our experience, and they try to give us advice.  Some individuals genuinely feel compassion toward our experience and try their best to help us.  And of course there are the myriad of people in between all these extremes who can get involved for a time, but when their lives become complicated their viewpoints change. 

Spiritually, it really doesn't matter in this life how other people see us.  Over time through experience you learn that ego is senseless, as every human being becomes stripped of ego, accomplishments, what they do, etc, sooner or later in their lives.  For many of you, it has happened sooner, rather than later.  Perhaps you are the first of your friends or family, to lose "what they are" to illness or circumstances.  If so, I am sure, it is difficult for you to endure something that you have no experience with.

What I have learned from my life with chronic illness is that circumstances in our lives can take "what we do" away from us, but they cannot take "who" we are.  This is of utmost importance. Most people in the well world confuse these two issues and they are not the same thing.  What we do can only be defined by the things we have done or are planning to do with our lives.  Who we are, is our inner essence.  It is what makes us special and what gives us our inner strength, light and purpose.  Once you know who you are, it is always yours.  And you begin to shine brighter than you ever have, when you were defined in the past by the things that you did.

Your personal truth can be seen in many ways.  And we find as we age, that it really doesn't matter what others think, what matters most is what you think.  And it really doesn't matter how others see your world, what matters most is the way you see your world.  This is what I want to stress to you most.  And this is the way from here on in, you might try dealing with the world.

When I speak about the way you deal with the world, I am talking about something that you can control in your life: your attitude. Your attitude is the crucial part of walking down the healing road.  Without a positive attitude toward healing and an openness to positive change, no positive changes can happen.  For when you see the world negatively, only negative things can come through to you.  It is only when you open your eyes wide, that you can see the rainbows all around you.  If you walk with your eyes shut to the world, not only do you stumble and fall, but you miss the flowers and the beauty along the way.

I have chosen to pave my path in flowers.  I learned a long time ago, that paving it in rocks, only allows me to see the rocks in my path.  If I pave my path in flowers, then flowers will bloom and grow along my way. 

I have mentioned many times about the walk I take each day through the mountain countryside.  On this walk, I cross over a bridge that goes over a small lake surrounded by the Rocky Mountains.  Now those mountains are covered with snow.  But every single day, there is a waterfall over the bridge that catches the sunlight.  And each day I go by it, I can see the colors of the rainbow on the water that catches the suns reflection.

Now, if I was looking down by feet, because I didn't expect to see anything beautiful, then I would not.  But when I raised my head up high and looked out for the first time with an open mind to beauty, I saw it everywhere.  I saw it in the green valleys and in the purple mountains.  And I saw it by the waterfall, in the form of a rainbow.

I would never have seen that rainbow, if I was determined I could see nothing.  All I would have seen was the concrete under my feet.  But when I made a conscious effort to look up and out at the world, and to find beauty, I saw it instantly.

There is beauty in our journeys through chronic illness.  There is beauty in our relationships and beauty in the love we share with others.  There is beauty in what they give to us, and how we can take the time to give more to them.  There is beauty in finding our way through the maze, and finding trusting souls to guide us.  There is beauty in our healing, and in our inner strength.

Attitude is our choice to make.  It is probably the only thing in this whole process we can control.  Remember this, and pave your path in flowers.  You will see the flowers bloom beautifully, along your path to healing.

Happy Holidays to all of you, as we wait for the close of 2005 and the beginning of our new and brighter life in 2006. I assure you, better days are ahead of you. Let us walk down this healing road together.

Always with peace and love,

Frannie

Frannie Rose, author of Fixing Frannie, available online at www.amazon.com and www.barnesandnoble.com is a Patient-Advocate, Inspirational Speaker and Writer on issues relating to keeping your spirit alive when dealing with chronic illness, and the medical system today.  Copyright 2004 Frannie Rose. All rights reserved.

-To send a question, send an email to FrannieRose12@aol.com.  You will receive a private answer and some questions will be published in this weekly column, anonymously.

isclaimer: Frannie Rose strongly urges list members to consult a health care professional on all medical treatment issues. Do not substitute any of the above information for that of your physician or health care provider regarding your medical condition.