Trudy Triumph's Neurogenic Bladder Blog

Beyond Embarrassment: The Launch

I want to share the words I said at the launch.  They were spoken with a lot of emotion.

So much of life is in the smallness of moments…but harder to mark.  And even harder to remember….Tonight we are enjoying the grand celebration to mark the completion of a book, a book that took far too much of my time.

The deeper the difficulty fulfilling the dream, the brighter the outcome of the fulfillment. The sweeter the celebration.

I feel honored that you are here for our celebration.

Allow me to offer you some background on how this book actually came about.

Try to think back to a time when you faced a life changing

Situation that you wanted to run from.

When I left the doctor’s office on that fateful day after my diagnosis of urinary retention I was glad to know the root of my problems but I also I felt humiliated, defeated, and overwhelmingly and embarrassed.

My many confusing symptoms were caused by a broken part…and to make matters worse it was…down there…

As I continued my daily life I had a menagerie of thoughts I needed to work through. Sometimes facing the world was difficult.  To help process my thoughts I started journaling sometimes as prayers to God.

I had so many notes I decided to start an anonymous blog TrudyTriumph.com, under the pen name Trudy Triumph.

On February 12 of 2012 I posted my first blog entry sharing with the world about how I felt about my diagnosis of neurogenic bladder.

The book started then too.

Here we are 4 years later the book was born, hard labor and a collaboration that happened, beyond my wildest dreams.

When I imagine the reaction of my friends and family to this book and its topic, I feel a bit queasy because, now they will have a peek into my very private life.

Part of me does not exactly want to be remembered in connection with a toilet, yet I see toileting dysfunction as a last frontier of topics that need to have mature acceptance and an active audience.

Here I am talking to you about bladder and bowel problems. This was once an unspeakable topic for me. I knew that good girls did not discuss such topics.  Now you can see the deep crevice in my mind, I needed to cross.

And yes I not only crossed it I threw my paddle away!!

We finally have a book that is by a patient, for a patient.  Now the world will see the other side of the story.

I would like to do a reading from Beyond Embarrassment

Beauty from Adversity

I collect sea glass — pieces of clear and colored glass that were, at some point, thrown into the ocean, broken, and are now polished and made beautiful from years of being tossed in the waves and scoured on the sand. The excitement is in the hunt as I walk along the beach, enjoying the water and waves. Imagine: what was once garbage has become a treasure beyond measure.

On my birthday one year, my adult daughters whisked me off to an island near our home to look for sea glass

As I walked on the beach with my daughters that day, I glanced down. Right between my toes sat a cobalt blue pebble.

If a bottle floats on the sea and never encounters a storm or smashes into some other debris, it may come to rest on the sand and eventually be buried forever. But if it hits rough seas and crashes on the rocks, it will break. The resultant fragments will be tossed about and eventually burnished into the treasured pieces of sea glass that I collect.

Are not our setbacks a bit like sea glass? As we encounter adversity, we are forced to adapt and grow. I encourage you to find what works for you — everyone is different and lives with his or her own unique cir­cumstances I have shared my story with you from the first symptoms to diagnosis, from early strategies to the routines and processes that have helped me live with my new normal. My hope is that reading about my journey may help you discover your own path. As you travel through rough patches, may you be encouraged by the knowledge that others share your struggles and are living their lives in the best way possible.

And now this book Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel is a reality.

There are many people who made this night possible.

First of all, I would like to thank my compassionate, brilliant, and encouraging husband, Randy Lake. He is my partner in life, and I am so very grateful. He has been supportive of my wrestling with issues as a patient and loving me through difficult situations. The topic opens up aspects of our private life as well. He agrees with me that this story will help people, so he is willing to lay his privacy aside.

After I started the blog, my urologist Dr. Lora Plaskon suggested that I write a book her confirmation was empowering.

My luck did not end there. I have a dear friend, Julia Parker, who is a research medical librarian she really believed in this dream and made it her dream, too. When Julia started adding her research and grounded ideas, we got excited because the manuscript became balanced, complete, and credible, my story and her in-depth research, like yin and yang.

My road to finding the healthcare and support I need is sprinkled by lovely people.  Before I retired my colleagues at the Kent school District, including the school nurses at each facility, helped make my working possible.

My dear friend Dr. Earl Bardin whom helped me on the right path to good medical care.

Along the way in the early days when my confidence was rock bottom I had proofreaders who provided me sound advice and encouragement:  Susan Kopczynski Jostrom, Kathy Imahara, Susan Engle, Joan Burt, Elaine Plummer, Mary Etter, Sandy Newcomb and Renee Meade. They gave me great ideas and helped me see that my project had potential to continue. What they saw was raw and slight but these women took the time and offered up hope and saw potential in my writing.

I also want to thank the people, some anonymous and some not, who have shared their heartfelt stories and expertise with us.

I had encouraging writing coaches, kind and so very talented editors,    So many people helped with this project.  Too many to even name.

Beyond Embarrassment offers coping tips, facts not just for those who suffer from neurogenic bladder and bowel but others that might have a difficult diagnosis to overcome.

I want to reassure others afflicted with medical disorders that they are not alone, never forget we need to advocate for ourselves, that there are ways to cope, and life can be wonderfully lived.

We all have the right to shed the shame and stand proud!

No I am not Crazy, I have a Bladder Infection

I realize lately I have been complaining a lot about my well being. I apologize for thatPhoto #4, but since I feel rotten and this is my blog, you get to ride along. Personally, kidney- bladder infections are the pits. I have been letting my family practice doctor handle my chronic bladder infections these days; perhaps it is not working out so well.

Last Wednesday I felt an infection start. My urine smelled like ammonia; I knew I was in trouble. The doctor told me to “make sure I needed antibiotics”, so I waited until my urine was cloudy and my bladder and body was wracked with so much pain I could barely stand it. I went to the Saturday clinic, thinking that I could drop off a urine sample and then get some antibiotics.

But, no, this is where my story gets started . . . .

After inspection of the cloudy urine, I was told I needed to wait until 9:45 to see a doctor. I was not going to be given antibiotics until I saw a doctor. It was a Saturday and I had a baby shower brunch that morning, a visit with my daughter after that, and a WACAP Auction (Fundraiser for Homeless children) to go to later in the day. So for 2 hours I waited on that uncomfortable chair, in agony, as my body throbbed. And, of course, I did what any red-blooded American girl would do in that situation: I wept. I cried because of the discomfort. I blubbered because the system is so screwed up. I sobbed because I was infuriated that I knew I was getting a bladder infection on Wednesday, but had to wait until my urine was cloudy. I was outraged because the doctor insisted on seeing “cloudy urine”, my kidneys hurt and their degeneration was once again evident, as I tried to sit on that horrible chair.

Wait, it gets better . . . there’s more!

So, I was finally called in and my tears flowed. By that time, my eyes were puffy and I had to have my temp taken, my blood pressure taken, my height: all the time-consuming stuff . . . I admit I was not patient with the nurse. I explained that I was a “frequent flyer”, that my records were on file . . . nonetheless I needed to to answer all of their questions. By this time, I felt ready to faint.

Now, here it goes. She left the room and came back: With a Form! Just one more, she says. How much alcohol do you drink on a scale from one to 10; and Do you think you are clinically depressed? Oh my goodness!! NO, I told her. “I am not an alcoholic; I am not clinically depressed. I had a very painful bladder infection and was made to go through so many hoops to get help.” “I was honestly really angry and I cry when I am frustrated.”

Finally, I was able to see the doctor, and given antibiotics.

They did not kick in until the next day, so I continued with my Saturday appointments still prickly and pissed off from my morning encounter with the healthcare system.

Bladder infections are the pits. Sorry to unload. (Whew, that does feel better)

Please tell me how you handle this stuff?

 

Beauty from Adversity The Book Beyond Embarrassment

sea glass
I collect sea glass —

pieces of clear and colored glass that were, at some point, thrown into the ocean, broken, and are now polished and made beautiful from years of being tossed in the waves and scoured on the sand. The excitement is in the hunt as I walk along the beach, enjoying the water and waves. Imagine: what was once garbage has become a treasure beyond measure.

On my birthday one year, my adult daughters whisked me off to an island near our home to look for sea glass.

As I walked on the beach with my daughters that day, I glanced down. Right between my toes sat a cobalt blue pebble.

If a bottle floats on the sea and never encounters a storm or smashes into some other debris, it may come to rest on the sand and eventually be buried forever. But if it hits rough seas and crashes on the rocks, it will break. The resultant fragments will be tossed about and eventually burnished into the treasured pieces of sea glass that I collect.

Are not our setbacks a bit like sea glass?

As we encounter adversity, we are forced to adapt and grow. I encourage you to find what works for you — everyone is different and lives with his or her own unique cir­cumstances I have shared my story with you from the first symptoms to diagnosis, from early strategies to the routines and processes that have helped me live with my new normal. My hope is that reading about my journey may help you discover your own path. As you travel through rough patches, may you be encouraged by the knowledge that others share your struggles and are living their lives in the best way possible.

 

Kirkus Review, They liked it!!

TITLE INFORMATION                    KIRKUS PICTURE
BEYOND EMBARRASSMENT

Reclaiming Your Life with Neurogenic Bladder and Bowel
JoAnne Lake and Julia Parker
Triumph Media Press (241 pp.)
$16.95 paperback
ISBN: 978-0-99-643054-8; December 1, 2015

BOOK REVIEW

Lake’s debut offers a candid memoir of her experience with neurogenic bladder and a wealth of practical advice about coping with its daily complications.
Five million Americans suffer from neurogenic bladder, which has symptoms and stigmas similar to incontinence. It occurs when nerves between the brain and bladder are damaged, often due to spinal injury or prolonged vaginal delivery of a baby. Lake, a Seattle-based special needs educator, had several strikes against her, including heavy lifting during her youth on a California farm, a difficult first labor, a hysterectomy that included removal of her cervix, and back surgery
on a herniated disk. By age 55, her pain was intense enough to require a urologist’s attention. It turned out that urine retention had stretched her bladder and left her prone to frequent infections, so Lake now had to use an intermittent catheter for every bathroom visit.

This book arose from her anonymous blog, begun in 2012 under the name “Trudy Triumph.” By revealing herself as an NB sufferer and discussing it in detail, she reassures others that they’re not alone: “I see toileting dysfunction as a last frontier of topics that need to have mature acceptance and an active audience,” she says. The text, attractively laid out with leaf motifs and inset boxes, is packed with helpful tips on diet, exercise, hygiene, and intimacy issues. A nitty-gritty chapter on urinary devices and aids recommends adult diapers and special toilet seats and provides a diagram for inserting a female catheter. While useful, however, some sections aren’t always pleasant reading for the squeamish.

The book’s second part, “Blog Chatter,” is less essential, but its reader testimonials reveal the diversity of NB experiences. Lake seems clued-in and research-savvy, so she might have been able to write the “Knowledge Nuggets” and answer the reader Q&As without “Biosleuth” Julia Parker on board as a medical consultant. Appendices list suggested products, books, and websites, and the glossary is especially useful. Epigraphs from the Bible add an appropriate inspirational aspect, with Lake encouraging readers to see “setbacks a bit like sea glass….As we
encounter adversity, we are forced to adapt and grow.”

An invaluable resource for NB sufferers.

 

My author page

 

Who takes care of the Medical Frequent Flyers? (AKA – Please don’t give up on me; I’m still here!)

Lately I have been a “Frequent Flyer” – that is, with multiple doctor’s offices.  I have been in to visit my urologist, a “doc in a box” emergency care clinic last Saturday, and today, I am heading out to my family practice doctor.  WHY?

All because I can’t seem to get these bladder/kidney infections under control.

The pain is distracting, as I know many of you understand.  I have had back pain because of my kidney and bladder that seems to take over my body because it makes my whole body hurt.

What I have a hard time comprehending, digesting and determining is to whom do I go when the problem persists?  A few months ago I was in the emergency room due to a kidney infection.  No kidding, it caught me totally off guard; I thought it was an appendicitis, it hurt so much. Once in the emergency room, I was told to book an appointment with my “doctor”.

I automatically booked one with my urologist.  When I got there, however, my doctor was out of the office and the Tech lady asked me, ”Who is treating your kidney infection?”  I thought, “ummm, well I thought YOU were,” but perhaps I should have gone to my family practice doctor.  I was given some antibiotics and told to take them for a week.  I could tell however, just by how my urine smelled after the course of antibiotics was complete, though that I was still in trouble. I dutifully stopped taking them.  Sure enough, the pain and cloudy urine showed up several days later, again, now, on a Saturday.

I was told by my urologist’s assistant that if I have an urgent problem I need to go to a “doc in a box”: no more emergency calls or dropping off urine at the lab. So, I walked into a clinic and was given another antibiotic.  I hoped I got something that would do the magic.  I got the lab results today and the culprit turned out to be “E. coli”.

Today, I have an appointment with my family practice doctor.  I still have pain, and low energy.  I hope he can help me.

I guess the reason I am sharing this with you is that I am still really confused. I feel like the little puppy going around and asking, “Are you my mommy?”

I know that I am a “Frequent Flyer”; I am just not sure who to go to for my various medical needs. It scares me to death to have to go to different people for my “health basics”.

I understand that additional and new strains are being put on our doctors, now, so I am trying to be patient and wait until new systems are put into place.  Until then, do I need to get sicker and sicker because I am a medical headache for the US medical system?

This morning I was reading the news online and read an article through the BBC about how good the UK Health Care System is for “End of Life Care” – the best rating of any medical system in the world [see http://www.bbc.com/news/health-34415362].  I happen to know, through readers of this blog, that getting to see a urologist takes a long time and that continuous care from that urologist is impossible, at least for those of you who have written to me.  The urological patients are referred to “Continence Nurses” after diagnosis. I’m not inferring that the care provided by these dedicated nursing staff is inferior, just that access to the urologist themselves is blocked after they have been referred. I do hope it is comforting for my friends in the UK to know that End of Life issues will be so easy for them, at least.

How about this wonderful life?  The one that we only have one to live? I still see myself as a healthy person, even though I have a chronic illness. I have a long life to live, many things to do . . . .

HOLD THE PHONE, NOT SO FAST!!  Is this where we are heading? How about when what I need is NOW (or yesterday)? Medical costs aside, I want quality care now and I do not want a system like the UK, thank you very much!

Have you had a hard time finding consistent medical care?  Please share your story with us.

We are better together.

Trudy

 

 

 

Let’s talk about Holding your Urine

Not long ago I received this comment from the Ask a Question part of the blog. Photo #4

 Dear Trudy.

I’m a 23 years old male who thinks I have neurogenic bladder, yet not diagnosed. Here is my story, about 4 months ago I took shower with cold water and the next day was like a hell, I went to toilet like 20 times, but nothing happened during the night, I mean I didn’t wake up to urinate. Anyway the following month was up and down, some days were good, some days weren’t.

Two months after that, I made very silly things due to my social phobia. I cannot go toilet in public spaces, actually it is very hard for me to go toilet except, my house. During those days I had to travel a lot, and I had to use public toilets, but I couldn’t. I held my urine like 4-5 hours for first day, later 2-3 hours and for 1 week all this time I was holding my urine. When I got back home, after all this incidents, I felt weird on my bladder area and urine flow. My urine was not like how it used to be and sensation of urge to urinate has decreased. I went to doctor and he tested me with a urine flow meter and said yes there is a problem.

I don’t think it is a bladder problem. I think it is neurologic bladder, cause sensation is disappeared now.  I am able to go when I got the toilet,  but in morning I can’t feel urge to go to toilet. I start to urinate after 5-8 seconds. I hope you can give some idea about what I have and how I am going to manage it. 

Sorry for my English, I’m not from UK or US.

Best Wishes, Utku

Dear Utku,

For years had symptoms of Neurogenic Bladder not understanding what that was..  But a turning point for me was when I got very sick with bladder problems.  Neurogenic bladder is a bladder problem.

I worked at a school and toileting breaks were few and far between.  So, at times, I was unable to use the toilet when I felt the urge.  I wanted to be a good employee so I ignored the urge to empty my bladder and in doing so I caused more problems for myself.  I became very sick.

I was pressing my urine out. That act should have been a clue that something was wrong.  I was relatively comfortable and in a holding pattern, just like you.  I thought I would be able to go on for years with clear urine and dealing with a broken bladder. I finally went to a urologist because of the extreme pain. There was blood and an infection in my urine.

The reason we should not ignore these symptoms is because the urine back up can harm our kidneys. We need to be kind to our kidneys.

I am sorry about your inability to use the toilet when you are out and about.  It is very important that you try to empty your bladder when you feel the urge.  If you are like me and cannot feel the urge to urinate.  Try to watch the clock.  Try to go every 3-4 hours. It is best for your bladder and kidneys. Please see a doctor about this.  Holding urine can cause a lot of problems.

Thank you for your question. Please know that you are not alone. Get the professional help you need.  You can even show this blog post to your doctor if you think it will help you better explain your concern.

Best wishes to you and God Bless. Trudy

Here are some links to learn more..I hope they help…

Dangers of Holding Urine For Too Long

Holding your urine

Do readers have suggestion for Utku?  How do you push past the fear of using a public rest room?

Limericks from an 18 Year Prostate Cancer Survivor Guest Author Jim Yount

jim 3

WHEN I COULD NO LONGER PEE PAST MY TOES

MY DOC PUSHED A TUBE UP MY HOSE

I KNOW HIS INTENT

BUT I KNEW WHERE IT WENT

WHEN IT’S TIP CAME OUT MY NOSE

 

Do I have a treat for you. Finally guys it is your turn. Because of Google Analytics I know that most of my readership are men so perhaps you are reading this and you are incontinent because of prostate cancer. Please enjoy a guest blogger, Jim Yount.

 

Are you interested in being a guest blogger? How about joining our Circle of Friends?

 

Dear Trudy,

I am enclosing the material we discussed. I am an eighteen year prostate cancer survivor. In step with your blog “TrudyTriumph.com” I wrote the limericks over a period of several years post-surgery and radiation treatment. I did not observe humor in the hospital nor my urologist’s office, so I made an effort to give some laughter from my perspective to my doctors and their staff. I would recite a limerick to them about their treatment, exams, and their side effects of their efforts. I figured it was better to laugh that cry.

Some of these are pretty raw and exaggerated, which is the nature of limericks. They are pretty chronological in order and recorded for copy-right protection.

Please enjoy and smile,

Jim Yount

 

UROLOGY RADIO ONCOLOGY

 

SANDRA, SHARON, AND DEBBIE TOO

WITH MARKERS RED, WHITE, AND BLUE

DREW A MAP ON MY BUTT,

SO THEIR PHOTONS COULD FIND THEIR WAY THROUGH

 

IN A ROOM WITH A NICE COOL BREEZE

AND MY PANTS PULLED DOWN TO MY KNEES

MARY JO SAYS LIE STILL

I SAY THAT I WILL

BUT WHAT SHOULD I DO IF I SNEEZE?

 

DEBBIE, JANET AND THE BENCH WARMER, AND OLIVIA

TALK TO ME ABOUT TRIVIA

THEY SAY WITH A BOIG SMILE

HANG AROUND HERE A WHILE

WE’LL ZAP YOUR C-A TO OBLIVIA

 

TOM I’VE ONLY ONE WEEK TO GO

ALTHOUGH TIME GOES BY PRETTY SLOW

TO GET RID OF THIS ROT

I THANK YOU A LOT

YOU’VE LENGTHENED MY LIFETIME I KNOW

 

I’M FEELING MUCH BETTER THESE DAYS

THANKS TO YOUR CARING PROFESSIONAL WAYS

AND TO YOUR FINE STAFF

ALWAYS QUICK WITH A LAUGH

I THINK YOU SHOULD GIVE THEM A RAISE!

 

THERE WAS AN OLD MAN FROM TEMPE

WHO WAS FILLED WITH JOY AND GLEE

WHILE HE WAS TRANQUILLY DREAMING

HIS DOCTOR WAS REAMING

SO NOW HE CAN ONCE AGAIN PEE

 

I CALLED UP MY DOCTOR TODAY

ABOUT THE RESULTS OF MY LAST P S A

HERE’S WHAT HE SAID

“JIM YOU ARE NOT DEAD”

OH BOY, DO I LIKE IT THAT WAY

 

THERE WAS A MAN FORM PAH RUMP

WHO WAS LEFT WITH A NAUGHT BUT A STUMP

WITH HIS DOCTORS PRESCRIPTION

AND NURSE KAREN’S DESCRIPTION

HE PUMPED UP HIS TRUMP FOR A HUMP

 

IN A DOCTORS OFFICE IN WHICH I TAKE STOCK

NURSE KAREN WORKS FOR MY UROLOGIST DOC

SHE HELD ONTO ME

WHILE MY DOC HELPED ME PEE

BY SHOVING A STICK UP MY COC

 

WHEN I COULD NO LONGER PEE PAST MY TOES

MY DOC PUSHED A TUBE UP MY HOSE

I KNOW NOT HES INTENT

BUT I KNEW WHERE IT WENT

ITS TIP CAME OUT THROUGH MY NOSE

 

January 2010

 

THERE WAS AN OLD MAN FOR LAKE PLACID

WHOSE DEMEANOR WAS INCREASINGLY ACID

SINCE HIS SURGERY WENT ASCEW

HE COULD NO LONGER SCREW

BECAUSE HIS ORGAN WAS FLACID

 

THERE ONCE WAS A WOMAN NAMED ALICE

HOW GAVE HER HUSBAND CIALIA

IF SHE ONLY KNEW

SHE’D TURN BLACK AND BLUE

FROM THE BANGING SHE GOT FROM HIS PHALLUS

 

FOR A BIOPSY OF MY PROSTHETIC MASS

TRANQUILIZED, THE DAY QUICKLY DID PASS

ALL I REMEMBER OF THAT DAY IN DECEMBER

IS SOMEONE’S COLD HANDS ON MY ASS

 

LITTLE WILLIE WAS ONCE A GO-GETTER

BUT LATELY HAS BEEN LIMPER, SORER, AND WETTER

THIS STUFF THAT I HAVE

CALLED DR. NAIR’S SALVE

HAS MADE LITTLE WILLY MUCH BETTER

 

I KNOW A UROLOGIST NAMED INGER

WITH WHOM I WISH NOT TO LINGER

BUT HE’S AS GOOD AS THEY COME

FOR A GUY WITH NO THUMB

WHO CAN PRACTICE WITH ONLY ONE FINGER

 

AND I KNOW WHERE IT GOES!

 

JULY 2011

 

MY DOC SENT ME TO ONE OF HIS CRONIES

WHOSE TREATMENTS ALL TURNED OUT TO BE PHONIES

HE SENT IN A YOUNG LASS

FOR A SHOT IN MY ASS

WHICH MANAGED TO SHRIVEL UP MY COJONIES

 

THERE WAS ONCE A UROLOGIST NAMED KELLY

WHO GAVE ME A SHOT IN THE BELLY

“IN MIRACULOUS WAYS

IT WOKS IN SEVEN DAYS”

SURE ENOUGH, IT TURNED MY WEE WEE INTO JELLY

 

ROLF PANKE IS MY HARD WORKING DOC

HE TREATS PATIENTS ALL ‘ROUND THE CLOCK

AS CHRISTMAS DRAWS NEAR

DOCTOR ROLF, NEVER FEAR

SANTA ILL FILL UP YOUR SOC

 

 

 

 

 

Author Interview, Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel, Part 2


Q. Do you have a mentor for writing publishing and speaking, and if so, how did you get that mentor?

A. I would have made so many mistakes without my mentors in the various steps with this book. My editors and book coaches have mentored me. Before I made a decision to find a publisher I joined the Palm Springs Writer’s Guild and I was paired with an author of multiple books, Jim Misko. He offered invaluable advice to keep me away from scammers in the publishing world. I also have a public speaking mentor for Toastmasters, Debbie O’Brian.

……………………………………….

 Q. What do you wish you knew before you started?

A. I wish I knew how expensive it is to get a book published.

……………………………………………….

Q.How do you balance writing and home life and a social life?

A. I think being a writer is a different breed in itself. I am lucky because my family is patient with my sneaking off by myself to write. I know I am a thinker and I like to analyze things. I also like to carry a notepad around so when I think of things I can remember them by writing them down. Social life is not overly important to me.  I enjoy my friends and family but I also like to write.  I try to give each quality time.

……………………………………….

Q. How can I buy a book?

A.Before December 1, there will be an opportunity to pre-order the book at a discount. The book will cost $16.95 (Actual price) after December 1. You can pre-order the book for $16.95 no tax, free shipping before December 1 from my website www.trudytriumph.com I also have an author page, amazon.com/author/joannelake you can pre-order there too.

 

Afterwards the cost will be the normal price plus tax and shipping.

 

After December 1.  There will be an opportunity to buy from Amazon, my web page if you live in the USA or order from major on line book stores.

…………………………………………………..

 Q. How is the world a better place because of your book?

A. I had two major goals in writing this book. The first one was to put together a how-to manual. A guide to live easily with neurogenic bladder and bowel.  Often times sufferers are home-bound and find it difficult to venture out.  I wanted my book to act as a springboard for others to go out and live a great life.  The other goal was to get people to talk about bowel and bladder issues in general.  So often this is a taboo subject and because of this there are many that do not get the medical help they need before things get really out of hand.

…………………………………………………..

Q. How can we as fans help you get the word out?

A. When we are ready please write a short review on Amazon or another e-trailer site—good, not so good, or bad. Remember honesty is the best policy.

The book will be ready for preview in a few short months.  If you are interested in a preview copy please contact me at TrudyTriumph@gmail.com

Help spread the word about the book on your existing platform, especially during the week of December 1, 2015.  If you blog I have materials I can send you.

Share ideas with me and brainstorm additional ways we might further expose the message to an even greater audience.

Thank you,  JoAnne Lake aka Trudy

Industry ‘must do more’ to Improve Urinary Catheters

CathetersI saw this article on BBC News and need to pass it on to you.  Please read it.

Industry ‘must do more’ to improve urinary catheters

When I was first diagnosed with urine retention I was instructed  to buy reusable red rubber catheters.  After the use of the catheter I was instructed to wash it with dial soap and let it air dry on a paper towel.

Only to find out later that other countries and even some major medical facilities

DO NOT RECOMEND REUSING INTERMITTANT CATHETERS BECAUSE OF INFECTION.

I think we as a community need to demand better care.

OK that was my soap box.  Have a safe day.

Beyond Embarrassment, Author Interview


Photo #4

The Theme of Beyond Embarrassment is shed the shame and stand proud!

Questions & Answers Part 1 of 2

What was your inspiration for writing Beyond Embarrassment?

A. I was understandably upset when I first found out that I had a neurogenic bladder. I could not talk about my medical problem because I was too embarrassed. Two things happened as I began my research and living with my neurogenic bladder:

I could find nothing on how to cope with neurogenic bladder and bowel and that made me frustrated.

I started the blog and then the book to get people talking about neurogenic bladder and bowel and to offer useful life tips for living.
……………………………………….

Q. How long did it take to write this book?

A. About three and a half years.

……………………………………….

Q. Where did you get the information and Ideas for your book?

A. I read books, I looked things up on the internet, I kept a journal and I joined support groups.
I got some of most helpful ideas from support groups. As an educator I need to break daily lessons down for the students to understand. I found I was doing, so in my mind, as I tried to live my life and daily cope with this disability.  As I came up with solutions for myself to make my life easier I wrote them down in my blog.

……………………………………….

Q. What do you like to do when you are not writing?

A. I enjoy my family and friends. I like to hike, movies, and reading.

……………………………………….

Q. What was one of the most surprising things you learned in creating your books?

A. I was happily surprised by the wonderful people I met that share my disability of neurogenic bladder and bowel. I was also surprised by the fact that I went from sheer fear and dread and complete shame to becoming beyond embarrassment in living with this condition.

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 Do you have any suggestions to help me become a better writer? If so, what are they?

Brainstorm, edit and read, read, read.

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As a child, what did you want to do when you grew up?

At a very early age I knew I wanted to teach. I also wanted to be an author. My father is a published author. He inspired me to write. As a high school student I remember looking up at the ceiling of the Library of Congress and promising myself that someday I would have a published book there someday.  By the way, my Library of Congress Number is 2015908628 if you want to look it up.

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Q. What was one of the most surprising things you learned in creating your books?

How persnickety some agents are… I am self-published because I could not sell my idea. Many were shocked by the topic which was surprising to me since toileting is a daily activity for everyone. The other surprise is how long I needed to work on this project by myself before I got others excited about the idea.

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If you could cast a character with neurogenic bladder and bowel in the Hollywood, who would play your character?

A. I have often thought that it would be cool if more authors would write in a character with neurogenic bladder and bowel. I have even offered on my Twitter and Facebook and LinkedIn accounts to help other authors to develop a character with this disability. Now to answer your question. How about Reese Witherspoon in a Legally Blonde 3. After marrying her hunk husband she has a rough vaginal delivery and ends up with no bowel and bladder control. She is still adorable and completely with it as she learns to navigate her life with incontinence. Some light humor, but mostly inspiration.

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I will post the rest of the interview next week.

 


 

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