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?

New at Be The Change

Check out exciting new links to Be The Change!


The NEW Be The Change Website
http://bethechangemn.com

Be The Change on Facebook
http://www.facebook.com/pages/Be-The-Change/197421696939529?v=wall

Be The Change on Twitter
http://twitter.com/bethechangemn

View Be The Change stories on YouTube
http://www.youtube.com/bethechangemn


Theresa Zimanske-Be The Change blog page has a new design too!
Always something new and exciting happens when you, Be The Change.

What is empathy....really?

Empathy as defined in the Webster’s dictionary is the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts and experience of another of either the past or present without having the feelings, thoughts and experience. Preferring simpler language, I think empathy means trying to imagine another person’s life without actually experiencing it.

A constant source of kitchen table discussion is uncertain needs of a friend with cancer or co-worker with a critically ill child. It can be a struggle to find the adequate margins and depth of empathy that matches the desired support. Understanding empathy begins with discussion but then moves into action, more clearly defining the word.

Empathy must also be found in our relationships between patient and medical doctor, offering another category of discussion around the table. An article written by Thomas Dahlborg recently published in Hospital Impact titled, “How a lack of empathy affects our healthcare” addresses some concerns as to why the importance of empathy between patient and physician seems lacking despite their oath.

This article strikes a very personal nerve for me because we consistently faced the empathy dilemma in our son’s healthcare. One of our challenges as a family with a critically ill child was getting the medical community to see us beyond the diagnosis, with eyes of empathy. The dynamics of a patient’s life and their family can not be excluded from the treatment plan. We were a real family with full time jobs and work demands, busy kids school and sports schedules, even a camper in the driveway before this horrible disease came to live with us. Taking that into account along with the many ways life had to change to make room for this disease was our new reality and affected Michael’s overall health condition.

Sharing real life experiences opens the door to increasing empathy by representing the patient family perspective in healthcare at Be The Change presentations. Talking about our human experience puts a real face to the diagnosis and raises the question of empathy in current healthcare strategies. Providers need to know the life of their patients in order to properly care for the total health of the patient and the family unit and our real life medical stories demonstrates the need for that.

While our son Michael fought against his disease, we as his parents were forced to fight an additional battle with what the disease was doing to our family. It would be unthinkable for a patient to treat an illness alone without the help of a doctor. The same is true in the healthcare battle with empathy; it can not be done alone. We share the responsibility of enhancing relationships between patients, families and their providers, the kind of relationship that creates strong partnerships and increases human capacity to practice empathy. Sometimes in the midst of discussion with Michael’s doctors about a possible procedure or surgery I had to remind them that this is my son; he’s a little boy not just a rare disease. Those words brought us into a new arena and allowed a decision about Michael’s medical care to be empathetic and statistical.

The need is here and now, for us to line up the patient family perspective with the medical perspective in the medical education system. Attaching Be The Change methodology to current medical curriculum is the missing link to putting empathy back as a priority in healthcare. Written and spoken curriculum taught by one who has lived the experiences of the patient and family perspective in health care, provides an education that can not be learned from any text book.

Be The Change MN agrees with the views of the article mentioned. “We must tackle the hard stuff” to radically increase empathy in healthcare and really Be The Change.

RMH at Childrens

The first Ronald McDonald House - RMH built within Minneapolis Children’s Hospital was recently highlighted on the local news this week, making it only the fifth in the nation. The Frick Family, interviewed as one of the first guests of this valuable means of support to families with sick children, spoke many of the same words of truth I also had years ago.

This type of temporary housing need wasn't one I ever considered my family requiring until we found ourselves, “on the other side of the fence”, which were actually some of the same words spoken by the Frick Family in their interview. In the case of critically ill children being away from home is an additional stress that’s often under stated in the medical arena, but dramatically impacts a patient and their family’s human experience, affecting the medical outcome.

There were days during Michael’s hospitalizations where being just a few steps away was simply too far from him and his fragile condition. We learned some creative methods in an attempt to acquire a short rest and yet be near our critically ill son’s hospital room. A make shift bed consisting of two pieces of furniture from the family lounge, pushed slightly together in an odd L-shape, was my least favorite.

Never guests of the RMH since our home is less than an hour’s drive from Twin Cities area hospitals, we still had the distinct pleasure of getting to know many families residing there while their children fought a medical battle. Their stories of appreciation and gratitude despite being away from home and extended family always increased my gratefulness for the times we returned home to ours. However, a home away from home such as the RMH inside Minneapolis Children's Hospital can meet the needs of parents not able to step away from the hospital due to a child's medical condition but still in need of respite, regardless of the distance they traveled to get there.

Be The Change supports every effort being made that gives families a place to call home in the midst of medical crisis. Kudos to Ronald McDonald House, Minneapolis Children’s Hospital and everyone involved with creating a one of its kind in the Midwest! Representing the patient family perspective through Be The Change, I’m confident that when we partner together in shared responsibility, tremendous needs are met for patients and families and demonstrate the true meaning of patient family centered care.

We all need a place to rest but even more so when the unthinkable is happening to one of your children. It provides room for each of us to Be The Change.

HELP Emily Koesters

One of my Schimke heroes is Emily Koesters from Nebraska, along with her parents Erin and Joe Koesters. Be The Change in MN recognizes and supports the tremendous need for research and testing of this rare disease.

Please, in honor of all the Little Giants affected by SIOD, consider their request below and help Emily Koesters.

Emily Miranda Koester’s Nebraska Little Giants Day 1st Anniversay, proclaimed by Governor Dave Heineman last year is coming up on FEBRUARY 10th!

The fight continues...life expectancy for Emily's disease (SIOD- Schimke Immuno-osseous Dysplasia) is age 8-15! Emily is 7 and 1/2 now.

The Schimke researchers are on the brink of a drug that may help PROLONG lives of SIOD. LET EMILY LIVE TO TEST IT!

Here's how to GIVE NOW:
1. Go to www.littlegiantsfoundation.org and click on the far right tab: GIVE NOW
2. Send us a check made out to Little Giants Foundation and we will send a mass mailing in. Address: Erin Koesters 15603 S. Hwy 6 Gretna NE 68028
3. SEND this site and/or FACEBOOK, LGF site to EVERYONE YOU KNOW to contribute!

We are setting a goal and deadline, which you may exceed, of $20,000.00. Think about it: We have at least 2,000 followers at 5 or 10 dollars a piece- we can do this by FEBRUARY 14th! Not only is this a TAX write off, but 100% of the money goes straight to the researchers for the drug! 100%!

We are parents pleading on bended knee!

Don't delay; Emily's life depends on it.

Believe-
Mommy Erin and Daddy Joe

BWAD

Did you know that Monday was Bubble Wrap Appreciation Day – BWAD? A couple of Indiana radio DJ’s began honoring this unique product with its very own appreciation day back in 2001. Intended focus given to bubble wrap enthusiasts everywhere. The Zimanske’s have their own special reason for appreciating this fascinating plastic sheet of fun. Another opportunity to chuckle and share happy memories of Michael goofing around with one of his favorite things, bubble wrap.

He would pop that bubble wrap over and over again until tempted to roll him up in it. He even figured out that rolling over it with his wheelchair made popping sounds without interruption. He loved the popping noise and the louder the better. Actually he just loved noise. I can remember trying to teach him the difference between noise that was necessary and noise that wasn’t! Now I can laugh at such wasted energy. Isn’t it funny how something once found so annoying is the very thing I now long for; just some plain and simple kid noise.

Michael’s death produced a premature and often confusing empty nest scenario for me. Adjusting the empty nest radar is one of the many things you learn to alter with a child who has special needs. That particular altering wasn’t too difficult since Michael use to proudly proclaim he planned to live at home until he was forty! I can recall him asking us if once he got married, could he and his wife live in our basement. As I began to live life without Michael, hidden in my subconscious was the blaring reality that I will never finish parenting my son. Fortunately, I’m surrounded by the lives of many other children, which comes as a tremendous blessing to a lonely mothering heart, yet makes it imperative to consistently assess boundaries and motives.

In my life, having another child to parent provides a motivation to keep moving forward. It offered acceleration to some of the grief process despite the intense sadness. Our daughter Jessica graduated from high school and left to college only fifteen months after Michael's death. I recognized it was the fresh new start she desperately needed, forcing us to look for one too, but it created a stifling quiet. All of a sudden it wasn’t just Michael's noise missing, all the noise was gone. It made me realize I really did like noise and led me to continue the legacy of a noise maker.

Celebrate BWAD this week, in honor of all the noise makers out there. Pop a few sheets of bubble wrap and make some noise. Don’t limit or be silenced in the ways you create noise, especially when it involves something you’re passionate about. Make it a distinctive sound we should all hear to Be the Change.