One missing....

I have seven wonderful brothers and sisters. Together as siblings we have weathered many storms; Mom’s cancer years, Dad’s sudden massive heart attack and Michael’s rare disease.

I love them both collectively and individually and share unique relationships with each of them, especially with my three sisters. As women and mothers, we travel a road distinct from my brothers. We recognize features in each other that nurture the treasured place we come from. Others comment about the similarities we have, which are proud moments for me.

The last few years, I've shared a weekend with my sisters at an exclusive B&B up north. (That's what I call my youngest sister’s home!) This year, four turned into three because my oldest sister was missing. Ovarian cancer treatment currently limits her choices, but a faithful and hopeful optimism continues, leading her towards a healthy future.

I struggled with whether or not we should do sisters weekend this spring since all of my sisters weren’t able to partake. Should we still go regardless of my oldest sister’s plea to go with out her? This particular week was picked months ago for an opportunity to watch our nephew’s high school play performance. We certainly didn’t want to disappoint him in having “the aunties” from his Mom’s side in the audience.

During my decision making process I began to recall times when I encouraged my siblings to do things without me during some of our personal healthcare circumstances. That actually helped me make my final decision.

We don’t always get to choose what we do, or if it will be together or apart. There are seasons each of us will walk a narrow path purposely built only wide enough for one. In life’s occasions one might be missing, either temporarily or permanently. I believe the best way to honor anyone missing is to live life joyfully and make decisions that best represents them. Joy isn’t simply defined by what is, but in what was and in anticipating what is to come.

In grief, one is acutely aware of something missing and eventually learns to adjust accordingly. In grieving my parent’s death and then my son Michael’s, I have experienced the importance of making choices filled with life giving energy. My parents often said, no matter what, with or without them, we are a family. They showed us that in standing together, we lighten the load of life’s burdens. Now I see my siblings demonstrate that philosophy, respecting the words of wisdom passed down by two people we adore.

I just returned home from my northern retreat with my two sisters. We had a good time but certainly aware of one sister missing. In our hearts, she came with us. We look forward to the next time we are all together to Be The Change!

Ways to be a wise consumer

WCCO News recently reported about Gov. Mark Dayton ordering competitive bidding for state contracts and a new level of financial disclosure. The story grabbed my attention since I have over twenty years of medical insurance experience plus it shouts Be The Change!

Real reform begs each of us, from legislators to healthcare consumers, to have a renewed focus on where our money is going. We must consider how much bang we get for our buck not only in the quality our dollar purchases in healthcare, but also in terms of insurance reimbursement standards.

The days are over when consumers only concern is insurance out of pocket costs in comparison to their premiums. Consumers have a type of vested interest in the ways medical insurance administration act as wise stewards with our healthcare dollars, which translates into available healthcare options and overall costs. It all goes hand in hand.

Be The Change supports financial disclosure and bidding competition for health plans. It’s necessary to build new pathways for some much needed change in that healthcare arena. Corporate profit can not continue to dictate the choices patients and families must then struggle to cope with, especially in the case of chronic and rare diseases.

Cub or Rainbow isn’t the only place we need to be wise consumers. Insurance choices such as a Health Savings Account and other similar plans is creating a product awareness that puts much needed focus on the cost of healthcare services rendered in relation to insurance coverage. Health insurance companies play a big role in the healthcare environment and need to reform along with everyone else.

Ask your clinic, hospital, pharmacy and even your insurance company about the varying competitive costs of services and reimbursement rates. Information is powerful therefore shop around, get more equipped to make wise consumer decisions and Be The Change!

Can I Be The Change?

Following a presentation I gave a few days ago at the University Of Minnesota, School Of Nursing, Be The Change continued in an energizing discussion with a Nurse Practitioner.Her provider plus educator perspective fueled all sorts of possibilities each of us, equipped with an individual set of medical experiences, can improve healthcare.

Is it possible for any of us to really Be The Change? The question begs to be asked by any patient, family member or provider desiring a change right now, not sometime in the near future.

Can anyone be the change at their current job and relationships in and out of the work environment? The answer is yes! It is possible. First and foremost, believe anyone can Be The Change, regardless of job title or college degree. The somewhat daunting task to change should never stop us from being the one who begins a chain reaction.

Consider these simple suggestions as a way to Be The Change, starting today!

• Be the one who says good morning to others even if yours wasn’t
• Be the one who gives respect to any job ranging from mail clerk to CEO
• Be the one who won't exceed work break or lunch time allowances
• Be the one who refuses to have a bad attitude or gossip
• Be the one who consistently smiles and says thank you

You might be thinking, how can any one of these small changes make a big impact? In order to be changed in a way that is altering and sustaining, minor daily modification are required. Remember, it’s often little things that are overlooked when searching for a dramatic change.

These suggestions may seem simplistic in words, but moving the words into action is no small task. However, perseverance will make the ordinary become extraordinary. Your change affects others and turns into shared ownership that positively impacts everyone around you. Encouraging them to be the change too.

Be The Change challenges each and every one of you, whether you are in healthcare or not, to start today on your individual path to Be The Change. Feel free to share your story with me at http://bethechangemn.com/share-your-story.

At the close of every Be The Change presentation, I say, “One nurse, one doctor, one person leads by example affecting others and is the change”.

Be The Change, you might be the one!

It's Orientation Day!

Be The Change participates in the Park Nicollet Health Services, Orientation Learning Day. Each month I share a small portion of Michael’s story with new nurses just beginning employment with Methodist Hospital. The primary focus of my talk is death and dying, highlighting a few details about Michael’s last, end of life hospitalization.

Death, especially when it involves a child is not an easy topic to discuss. Honest dialog from someone experiencing the unthinkable supports the many who deliver that avenue of care daily. A family member speaking about the specific nursing required during that end of life phase, steps in the right direction towards strengthening partnered relationships between patients, families and their providers. Dispelling the “you against me” myth and instead uniting us in a common goal.

An emotional topic such as death and dying, presented to a healthcare audience who walks the end of life road with patients and their families, has proven to be a valuable partnered relationship. Park Nicollet Health Services is displaying in action a commitment to patient family centered care by including the patient family perspective in their orientation process.

Be The Change presentations create opportunities for patients, families with their providers to use real life experiences as a tool for healthcare improvements. Speaking out on behalf of patients and families, I make their perspective present and attach it to medical expertise. A partnership that nurtures the human experience as well as impacts the quality of medical care through a shared ownership centered in respect of each others role.

This type of healthcare impact is being overlooked by many medical departments and healthcare organizations. The patient family perspective must be present in all healthcare exchanges from daily patient care to corporate management, in order to form a relationship between patient, family and provider that’s not only healing but sustainable. It’s the very thing that’s been missing in previous attempts at improving healthcare delivery.

We have nothing to loose, only so much to gain when we partner together and connect our areas of expertise. Allowing patients and families to stand side by side with their healthcare providers, inside and outside of medical crisis, is the best possible outcome for everyone.

Usually it’s the little things, which really make a big difference. At Park Nicollet orientation I tell a story about a nurse that made exceptional arrangements for a tired mother, recovering from a mastectomy to be with her son just admitted into the hospital. The nurse became a significant partner, giving more than just small necessities the mother needed to stay with her critically ill child. A priceless gift of time was given, nurse to mother, since that hospital admission was her son’s last.

Stored inside that experience is an example of a human experience profoundly influenced by a nurse who already knew how to Be The Change. Thanks to Park Nicollet Health Services, its value can be proudly shared.

Every task, big or small invites us to Be The Change!

Michael's Heaven Day

The funeral was over. Flowers occupied random empty spots in our house. Silver foil containers filled the refrigerator. Michael’s room appeared the same as the morning he left it for what became his last hospital stay.

The morning after the funeral, sitting silently at the kitchen table, were the heart-broken weary remains of a family unsure of how to proceed. That’s when I started to weave together something my brother shared with me a few days prior.

Words shared in a conversation my brother had with Jessica, resonated in his spirit and prompted him to speak it out to me. He suggested my family take a trip immediately following the funeral, to allow some unfamiliar space and time without interruption to assist the healing start. Although difficult to do without Michael, that’s what we did. Middle of March 2005 just days after Michael’s funeral my husband Donn, our daughter Jessica and I boarded a plane headed to Florida.

Looking back on it now, I can honestly say it was a string of divine intervention. Beginning with faith filled words spoken then shared, to a travel agent able to plan a trip for us in a matter of hours, despite spring break challenges. On to other extreme acts of kindness lovingly demonstrated by others, such as those who knew Jessica’s hearts desire to see a Twins game under the Florida sun.

We rarely speak of that March trip in 2005, unlike our other vacations that we relive in story after story and pictures galore. However, it deserves attention especially since it filled purposes beyond earthly comprehension. What began as a respite from the unimaginable became a time of grace. In our new family dynamic as three plus one angel we talked, laughed, cried, and rested. For days we repeated that process, safe in Florida's embrace. What resulted was a resolve to focus on Michael’s life, not his death and press forward to the day we see him again; all because of love.

Love surrounded us on that trip. It was the gentle force we desperately needed to step out in faith. Its flow continues, supporting the decisions that keep moving us forward. In any situation, even healthcare, when life’s good and bad are spoken out and shared it makes overwhelming possible. Words turn into a compass that gives direction to a path never walked upon before.

March 10^th, fondly referred to as Michael’s Heaven Day by a family six years lonely for the dream weaver. We can honestly say we walk through our grief knowing unlimited depths of love and confident waiting in and on the other side of painful grief experiences is the very One who holds him now.

In memory of the change maker, our hero Michael Zimanske, Be The Change!

Busy, busy, busy

A friend recently reminded me of the hidden treasures stored in being busy, especially in a fast paced society where the word busy is used repeatedly. Quite often it’s the answer to, “How are you?” Think about how many times you use the word and if you’re not too busy, ponder these thoughts.

There are many who wish they could be busy. The shut in who is forced to stay indoors because of the weather or the cancer patient too ill to leave the bedroom. I think back to the extreme busy in the dialysis months with Michael and the three to four days a week devoted to that life saving schedule. Every time Michael wishing he was busy with something other than kidney dialysis. There are patients and families enduring that intense schedule right now, which makes my current busy schedule, appear minimal. The fading memory of overwhelming busy has given me a new approach to the not enjoyable on my to-do list by thinking, it’s better than a day at dialysis. Calling to mind the hopes and dreams of a little boy who at one time wished he’d be busy with anything other than managing the affects of a rare disease.

Today, February 28, 2011 Rare Disease Day, look at busy from another perspective. There is two types of busy. One we control and one is beyond our control. Hundreds of rare disease patients, similar to Michael, have very little say in how they are forced to be busy with rare disease treatments such as dialysis and how the disease controls them and large portions of their lives. On the other hand, most types of busy are in our control, putting us in the driver’s seat setting the pace, which gives the opportunity to question, is my busy pace at the right speed, allowing it to be the gift that it is?

Sitting in the front seat co-piloting the life of our son Michael, a rare disease hero, I was involved in an “out of our control” busy, which provided a renewed outlook on a busy day. Watching Michael live and die from a rare disease transformed my busy way of thinking into a more truthful reality.

You can read inspirational stories about other rare disease patients at Inspire in recognition of Rare Disease Day 2011. These stories contain transforming words.

In honor of all the R.A.R.E. patients and their families who are currently very, very busy thank you for reminding us what busy really means. It’s important to never be to busy to Be The Change.

A relationship with your primary care physician

An article recently published in The Wall Street Journal Health Blog, “Survey: What Doctors Want to Tell Patients (And Vice Versa)”, left me a bit shocked at some of the information yet excited to read patient and provider results together.

One of the key points that caught my attention was on the issue of respect and appreciation. According to the survey 70% of doctors said they were getting less of it from patients and patients said the more they were being treated respectfully and listened to, the more satisfied they were with their physician. To me that’s not surprising.

Featuring the results of the two surveys in the March issue of Consumer Reports indicates doctors said forming a long term relationship with your primary care physician is the most important thing patients can do to obtain better health care. Since 76% of physician’s say it would help “very much”, how can patients develop long term relationships amidst the current primary care physician revolving door? In my healthcare alone, my primary care physician has changed three times in the last five years due to change in clinic location and moving to another state.

These survey results support a key focus of Be The Change; The importance of strengthening patient provider relationships. Many current healthcare concerns would be diminished if we simply put more attention on the relationship between patient and provider. It’s the beginning, middle and the end of every “best possible outcome” we hear so much about in all types of healthcare from preventative to crisis emergency care.

Mothering a child with a rare disease as well as a breast cancer patient myself, I have spent many years developing all sorts of relationships with medical providers ranging in the good, the bad and the uncategorized.

Try these suggestions in forming a patient-primary care physician relationship:

• When making the first appointment indicate you will need additional appointment time, which allows enough time for examination as well as questions and discussion.

• At the first appointment discuss your intention to develop a long term relationship between the patient, family, and the physician including the clinic. Clearly define your expectations regarding appointment availability, how physician can be reached during the day and call back philosophy. Discuss emergency, nightly and weekend care protocols.

• After the appointment record pertinent information in a patient-provider notebook brought to every following appointment, including prescription information.

• Access if this physician met your needs both medically and relationally. If not repeat the process. That’s the most difficult part in developing a good relationship with a primary care physician. If the first appointment didn’t go as expected, make another appointment or seek out a different physician. Either way, the additional investment of time and energy will be well spent if the unthinkable happens to you or a family member.

Similar to relationships outside the medical arena, a relationship between doctor, patient and family evolves over time. Intentional effort centered in kindness and respect that comes from all parties makes a good solid relationship. In my experiences, when I viewed my doctor as a real person with human qualities like mine such as fatigue, frustration, fear and vice versa, we were better equipped to build an honest, trusting relationship.

Respecting, appreciating and improving the relationships between patient, family member and provider will most definitely enhance the human experience that occurs inside the medical one. All of us will be more satisfied with the end result when we consistently ask the question, how can I Be The Change?