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

Expect the Worst…Hope for the Best

Years ago I was fretting about some college exams and my mother made sure I understood, “You expect the worst, hope for the best and most times it ends up somewhere in the middle.”  I was reflecting on that philosophy this week while going through some of my notes from reading I’ve done in the past couple of months. 

I read, “Dancing at the River’s Edge”.  The book is co-written between a woman with lupus and her doctor (the doctor’s portion much more interesting than the patient’s).  There was a line in the book where a doctor says to the woman, “I can make you better, but I can’t make you well.”

This line resonated with me because it followed the expect the worst…hope for the best mentality.  The idea that once you receive the diagnosis there is always a crack in the cosmic egg.  That one little Achilles heal that even if you recover leaves a spot of vulnerability.  It’s the reason why it’s so important to revel in the joy of health on any level.

The first question to ask yourself then is, “What is better mean?’  It would require you to take an inventory regarding your physical, emotional, and spiritual being and mark that as your baseline…the starting point.  If you were to “get better” what would that look like?  How would you know you’re experiencing “better”?

Understanding your personal health continuum allows you to become more intimate with your life on many levels.  It allows you to tune into your body, mind, and spirit so you’re better able to provide the resources they need to improve your current situation.  Having the ability and the willingness to move up the health continuum propels you on your pilgrimage to health.

Like the line in the book says, you may not be well, but better is an improvement and that leads to hope.  Hope is the foundation for moving along the health continuum.  It fortifies body, mind, and spirit. 

What does better look like to you?  How would you like to work on “getting better”?  Are there things you’d like to commit to so you move in that direction?  I’d love to hear the actions you’re taking to “get better”.

Posted in Having a Voice

Women Should Be Outraged

I read a lot of health related articles and blogs.   Recently one article in the NY Times caught my attention because it showed the gender bias in our society.  The article was about drugs for lupus.  A new drug for lupus hasn’t come on the market in almost 50 years.  The old treatments are used but nothing seems to be emerging as the new kid on the block.

What concerns me is that the article also stated that 9 out of 10 diagnosed with lupus are women.  If 90% of the cases are women why are women more outraged about the lack of new treatment strategies.  I may not be a woman, but I can certainly be outraged by what seems to be a clear case of gender bias.  Would the same lack of advances happen if 90% of those diagnosed were men?  I Think Not!!

The follow-up question is what is going to be done about this?  Are women’s groups talking about the need for more research, clinical trials, and eventually treatments that will aid those diagnosed with this disease?  How can women’s groups come together and make it a real Women’s Health Crisis?

I know I’m probably preaching to the choir, but 50 years is a long time to go without any new treatment strategy.  If that were true of other diseases we’d be in a lot of trouble.  We’ve got science and technology, so is it the money?  Is Lupus not a high-profile disease?  Do we need some big celebrity to be diagnosed or a politician in order to get things moving along?

What are your ideas?  How can those diagnosed with lupus and their loved ones come out and take a stand for more research.  This illness is often debilitating for those diagnosed so new treatments are not a nice idea, they’ve got to be a priority.  I’d love to hear your views on this health crisis.

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 art and healing, Emotional Health, Spirituality and Health

The Never Ending Saga

Ever stand at the ocean’s shore and look out on the horizon?  What do you see?  I’m a beach baby and love the water, specifically the ocean, and what I was always amazed about was the vast openness.  The never ending water reaching out to where sky meets sea.  It’s that feeling that things will never end that those facing a chronic illness every day.  There is a constant reminder that the illness is ever present and most likely will be for the rest of our lives.  As someone who has faced an auto-immune disease for over thirty years I’m well aware of the impact the point with end has on one’s psyche.

Flannery O’Connor wrote, ” I have never been anywhere but sick…In a sense, sickness is a place, more instructive than a long trip to Europe, and it’s always a place where there is no company, where nobody can follow.”  I’d like to add, and hope no one ever wants or has to follow in those footsteps.  O’Connor dealt with lupus throughout her life and understood, quite eloquently, the impact physically and spiritually that a long road toward wellness can have on one’s inner journey.

It can take a long time to accept and embrace the “new normal” we have to live when our lives will always contain an element of medical treatment.  Many can’t understand the experience of having a host of doctors on your Christmas card list, but they become an integral part of the lives for those facing chronic illness.  It would be great to be able to take a vacation from chronic illness, but unfortunately, it goes on and on so it’s up to us to be able to take mental and emotional vacations.

I’ve found that one of the great ways of taking a frequent vacation from illness is by creating art.  It gives me time to enter “the zone” and in that space all outside distractions disappear like fog when it’s touched by sunlight.  The creative juices flow and it overrides the ick/discomfort/annoyance felt toward the illness or transforms what could become the “pity pot” to something beautiful and resourceful.

I’d love to hear how you are taking a vacation from your chronic illness…even if it’s just for a moment.