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Summer is quickly approaching and before you know it we will be in Philadelphia at UOAA’s 7th National Conference. With so many new and exciting things planned it is sure to be the best ever! I know whenever I attend a conference I plan well in advance and create my own personal schedule to ensure I do and see all that is of particular interest to me.  This includes conference sessions, social activities and taking some time for local sightseeing in a place I may never have been before. I also always go out of my way to try a new food or beverage native to a particular city or state and in this case it will be an iconic “Philly cheesesteak”.   

As UOAA’s Advocacy Manager I’m very excited that this conference is being held in Philadelphia, a city so very rich in history and quite frankly home to our country’s first advocates.  Here is my twist on ways you can take advantage of this city and our conference, if you have a soft spot for things “advocacy”-related:

  1. Be sure to sign UOAA’s Ostomy and Continent Diversion Patient Bill of Rights during Exhibit Hall hours at the UOAA booth. These signatures will be collected for potential use in advocacy efforts to improve quality in ostomy health care. You also can see one of the 12 surviving original copies of the US Bill of Rights at the National Constitution Center while in Philadelphia.
  2. Pay tribute to our country’s first advocates and visit the Independence National Historic Park to walk in Independence Hall where our founding fathers signed the Declaration of Independence on July 4, 1776.
  3. Celebrate your independence and and see the most famous cracked bell in American history – the Liberty Bell.  You can see it for free at the landmark Liberty Bell Center.
  4. Calling all superheroes!  On Wednesday, August 7th at 2:45 pm attend the UOAA Advocacy Session United Ostomy Advocates to the Rescue”! Come hear first-hand from some of UOAA’s advocates on how they use their “superpowers”, and also learn more about current advocacy efforts underway at UOAA. Leave our national conference empowered to make a positive difference!
  5. Many times in advocacy we face an uphill battle and feel like an underdog. For decades now Philly has been known for the ultimate underdog tale in the Rocky movie series. Show your resilience and run/climb the infamous Rocky stairs at the Philadelphia Museum of Art.  There are 72 stone steps and at the top you can chant “Yo, Philadelphia! I did it!”. Or you can take a picture at the statue of this legendary “Italian Stallion” located near the bottom of the steps.
  6. Philadelphia is known as the “City of Brotherly Love”.  Show your love for the ostomy community and go to Love Park to get a picture at the “LOVE” statue designed by Robert Indiana.

    Love park

  7. Be sure to stop by UOAA’s booth in the Exhibit Hall to pick up some of our self-advocacy tools and educational resources for use when you get back home in your own advocacy efforts.
  8. When it comes to advocacy and activists I can’t think of a more wiser and inspiring person than the fascinating and influential Benjamin Franklin! Not only was he one of the founding fathers of the United States, but he was an author, politician, postmaster, printer, inventor, scientist, diplomat and statesman. Of interest to the ostomy community is that he was the inventor of the flexible urinary catheter and founded the first public hospital!  If you have time, visit the Franklin Science Museum or just drive by the Benjamin Franklin Bridge. As an advocate I am inspired by so many of his famous quotes. I often say the key to advocacy is not only raising awareness and educating others, but also patience and perseverance.  Here are a few of my favorite quotes by Ben Franklin:

“Tell me and I forget, teach me and I may remember, involve me and I learn.”

“He that can have patience can have what he will.”

“Justice will not be served until those who are unaffected are as outraged as those who are.”

“Energy and persistence conquer all things.”

    9) On Saturday, August 10th, at 2:15PM, please pop-in to contribute to UOAA’s first-ever research study by completing a short survey.  This data will help us make improvements to the underserved ostomy population. Upon doing so, you will also be entered into a drawing to win a prize!

   10) Join us during the conference Closing Ceremony at 3:30PM on Saturday, August 10th where we will be recognizing for the first-time the top advocate in the ostomy community! The Mighty Advocate Award, sponsored by UOAA, is a new biennial award intended to honor one individual for his/her significant accomplishments and contributions to support UOAA advocacy efforts and/or has brought greater ostomy awareness in the United States. Your presence will help make this a special moment in our advocacy history!

 

In conclusion, I’m excited to put a name to the face of the many advocates who have emailed me or have worked with me on advocacy efforts over the past couple of years, and meeting more of the people we strive to make an impact every day in our work at UOAA. See you in Philly!

UOAA conference speaker strategically uses humor to help ostomy patients

By Ed Pfueller, UOAA

If you’re a patient of Janice Beitz, PhD, RN, CS, CNOR, CWOCN-AP, CRNP, APNC, ANEF, FNAP, FAAN,  she will likely look you in the eye and know when to employ humor and when not to. If you’re in a rut you may get an ostomy joke to break the ice. “You think this bag is full of crap? You should see my bother in law,” she once quipped, breaking down all barriers for a man struggling to adjust whose brother-in-law seemingly fit the description.

Dr. Janice Beitz is a longtime WOC Nurse and educator who will speak on the power of humor and hope in emotional healing after ostomy surgery.

Ostomy surgery and chronic illness is not a laughing matter, but how you handle it can be a key to your success. It does not seem to be a coincidence that some of the most well-adjusted ostomates tend to have a sense of humor. Humor can change a negative mindset for you and those around you.

Dr. Beitz has over 40 years of nursing experience in acute, sub-acute and outpatient care settings. She’s explored the science behind laughter and health in academia and has seen it in patient settings. She will be a featured speaker at UOAA’s National Conference in Philadelphia this August.

Her talk is entitled, Intestines Are Soooooo Overrated: Psychosocial/Physiological Issues For Ostomates. She’ll discuss the social, psychological and physical issues of having a fecal or urinary diversion. The session will describe the findings from scholarly work on these areas of interest. Strategies for ostomates to achieve a high quality of life including therapeutic use of humor will be emphasized.

Dr. Beitz also teaches the next generation of WOC Nurses as the director of the Rutgers University Camden Wound Ostomy Continence Nursing Education Program (WOCNEP). Students she has taken to visit the jovial and globetrotting members of the Ostomy Support Group of Philadelphia have left in shock. “They turn to me and say these people have traveled more and have a better life than I do!” Dr. Beitz said.

“They are seriously funny,” Dr. Beitz says of the Philadelphia group led by Stanley Cooper that is always laughing and living life to the fullest.

“She is committed to her students. She is committed to all WOC nurses, and she is committed to all patients that need a WOC nurse to ensure they receive the best possible care,” Stanley remarked.

“Janice loves to have a good laugh and will supply a good laugh when she can. When she spoke to our group, she started off with a funny cartoon from a newspaper that she projected on a screen.” Stanley.

“One thing she said to me after her appearance was that she always wanted to enter a room after being introduced to KC and the Sunshine Band singing Get Down Tonight. That is the type of good spirited, happy, energetic person that she is” Stanley said.

Emotional health will be touched upon in many other conference sessions as well. A session geared toward young adults will address body image and self-confidence with an ostomy. Relationships and sexuality sessions will often center on emotional health as well. Overcoming physical challenges often comes quicker than lingering emotional ones.

For those who have not had a UOAA Affiliated Support Group experience, the peer support at conference can provide a sense of camaraderie that gives an enlightening experience for the many who still struggle with the day-to-day challenges of living with an ostomy. Caregivers are also not forgotten at conference with a session on how to cope with caregiver stress.

UOAA’s vision is a society where people with ostomies and intestinal or urinary diversions are universally accepted and supported socially, economically, medically and psychologically. Connect with us locally, online or at conference and get on a positive path.

At the conference, perhaps we can arrange to turn up “Get Down Tonight” as we welcome Dr. Beitz to give us a laugh and hope about life with an ostomy.

The Benefits of Giving Back In Spite of Your Health Challenges

By Lynn Wolfson

We all want to feel like valuable members of our community. However, many times we are held back by personal issues, lack of time or just a complete lack of knowledge on how to contribute to help others. For those who have not had the experience, they do not know the emotional elation that one gets by helping others.

Let me tell you a little about myself. I was born with a genetic disease that prevents my digestive track from functioning as it should. Consequently, I am fed through my heart (Total Parental Nutrition), I defecate into a pouch attached to my abdomen and I catheterize to urinate four times a day. All of this medical equipment did take me years to accept and learn to take care of on my own. However, once I learned, accepted and had my independence back, I wanted to give back to my community.

I started by participating in my local UOAA affiliated ostomy support group. I attended national ostomy conferences and met many people who also had ostomies. I then joined the Digestive Disease National Coalition in Washington, DC and learned how to lobby for Bills which are needed for the digestive disease community on Capitol Hill. There I met many people active in the digestive disease community and joined The Oley Foundation.

Lynn Wolfson is assisted by her service dog Zev as she travels for advocacy and conferences around the country. Lynn has battled Hirshprung’s disease since childhood.

After several years of attending national conferences with the United Ostomy Associations of America, The Oley Foundation, and The Digestive Disease National Coalition, I decided to create my own support group. I named it: The Weston Ostomy Tube Feeding Group. The group meets monthly from August to May and discusses many important issues regarding people with ostomies and enteral/parental patients.

Then I decided I wanted to help my local community. I started going to the Jewish Community Center and learning how to knit hats for cancer patients. I had not knitted since I was a little girl. I was not too optimistic since I have tremors. However, the ladies in the group taught me how to knit on a loom. I now make beautiful hats which I donate weekly to cancer patients. I was really feeling proud of myself.

One week there was a senior fair in the ballroom at the JCC while I was in my knitting group. I took a break from my knitting to go and check out the senior fair. While walking around the fair, I saw “Jet Express” and I stopped and asked about it. I was told that this was a service which the Goodman Jewish Family Services provided to seniors for $100 a year. The service is to pick up seniors and to bring them to medical appointments, shopping or social engagements. They needed volunteers to pick up these seniors. This sounded like fun to me. I called up Pam at Jet Express and signed up.

Since signing up, I have enjoyed taking seniors to medical appointments, the beauty salon, shopping or just spending the afternoon with a senior going wherever they would like. I find the seniors so interesting. I have one senior that has lived in Florida since the 1950s and she tells me what South Florida was like when she first came. Some seniors are here alone. Their children live out of state and they are lonely. I have one senior who I take out to lunch weekly. I find I learn so much from these seniors and I bring them home so happy. As happy as they feel, I always feel happier that I could do this for them.

Left, UOAA Advocacy Manager Jeanine Gleba with ,right, Lynn Wolfson taking part in the DDNC Day on Capitol Hill.

I then found out about The Cupboard – the kosher pantry which services individuals or families who cannot afford groceries, and Holocaust Survivors. The Cupboard is also part of the Goodman Jewish Family Services. I go to the Cupboard weekly to take grocery orders from the clients and help deliver the groceries. Since I cannot carry due to my medical equipment, I have a partner who can carry the groceries when I am delivering. I do the driving. Again, I really enjoy meeting and talking with all the clients. They are so appreciative of everything we do for them!

Many of the clients who are having a difficult time, emotionally, physically or financially are so elated when they see us, as they know they are not alone. I know for myself, that each one of us was given a “deck of cards” on life and there is no one that has received a perfect deck. We all have “rotten” cards. Those people that can overcome these “rotten cards” will be the most successful and happiest. However, as humans, we all need a hand in helping us to overcome our individual challenges.

Once we can master our personal challenges, there is no greater joy than giving back to others. Helping others helps each of us to love life even more and appreciate our individual gifts. Life is a matter of attitude. Those with a positive attitude can not only overcome their own challenges but also help others do the same.