Trudy Triumph's Neurogenic Bladder Blog

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New Back Cover of Beyond Embarrassment

Book Description:052915-BeyondEmbarrassment2_HiRes_Foreword2_6x9

Back Cover:

HEALTH/Women

Reclaim Your Life

Release the Fear and Embarrassment

For Women Who Suffer and Those Who Share Their Journey

JoAnne’s story is engaging. It inspires, while offering suggestions for managing life’s hurdles. In an honest, will-to-succeed style, this journey focuses on neurogenic bladder and bowel condition in which a person lacks control due to a brain spinal cord or nerve condition. The source can be aging, a chronic health condition, trauma, or many other causes. Often called an under active or over active bladder or bowel, its symptoms vary but the difficult daily reality is shared.

Valuable guide, much like a fresh prescription filled with practical advice
Educates, empathizes, and encourages women who struggle with the same health issue
Written with a girlfriend-to girlfriend feel, sharing the path to survival and success
Sprinkled with Tips and Knowledge Nuggets that high light points of importance
Encouraging and equipping the reader to live every day to the utmost

With medical input from expert medical research librarian and Biosleuth, Julia Parker, readers will discover current research and facts equipping them to meet their medical challenges and work with their medical teams. Valuable for healthcare professionals to share with patients

“Offers a candid memoir of her experience with neurogenic bladder and a wealth of practical advice about coping with its daily complications. An invaluable resource for NB sufferers.”

—Kirkus Review

“This is the best and most complete book on neurogenic bladder syndrome that I have read in my 30 years of family practice medicine. I will use it again and again as a resource and refer my patients to read this excellent book.”

—Kathy Matteson MN FNP ND Medical Provider

Kidney Kindness for the Neurogenic Bladder

About six months ago I was diagnosed with Third Stage Renal Failure. A wake up call for sure and I flipped of course because I am not the stoic sort. Please do not think bad of me, yes I grew up with Love Story too, I just do not want be the one saying long goodbyes. I know God is in control and in the end I have gotten used to the idea. Here is a little of what I have learned.

My husband and I had travels to do, so just yesterday was my first visit with the doctor who specializes in kidneys a Nephrologist.

What Is a Nephrologist?

https://www.davita.com/kidney-disease/overview/treatment-overview/what-is-a-nephrologist?/e/6884

A nephrologist is a medical doctor who specializes in kidney care and treating diseases of the kidneys. The term nephrologist comes from the Greek word “nephros”, which means kidney or renal and “ologist” refers to someone who studies. Nephrologists are also called kidney doctors. Nephrologists are educated in internal medicine and then undergo more training to specialize in treating patients with kidney diseases. They commonly treat chronic kidney disease (CKD), polycystic kidney disease (PKD), acute renal failure, kidney stones and high blood pressure and are educated on all aspects of kidney transplantation and dialysis.

For years I have been visiting the Virginia Mason Urology clinic, in Seattle Washington. Actually it is called the Urology and Kidney Transplant Department, Thoughts of dread swelled the first day I saw that sign. I was shocked to see the sign actually, I was not really thinking that there was such a strong connection between urological woes and kidney disease. “No dialysis or kidney transplant for me!” has been my mantra. Being real I need to know that even though it is unlikely it is possible for anyone with urological problems to end up with kidney disease.

My kidney woes likely started many years ago when I was living undiagnosed urine retention and then years following with back to back balder infections. For that part of the story check out my book, Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel.

So yesterday was my first appointment on the other side. I was ushered..

Calling all Underactive Bladder Patients!

Stanford Biodesign 2Hi All,

Not long ago I was contacted by some doctors from Stanford, who are interested in connecting with those of us that have an underactive bladder. I tried to get the scoop, but was told it was a secret for a while. I am passing this along in case you are interested in contacting them. If you do decide to help these fine folks, please let me know how it goes. I told them that I might be interested too, after I found out what they were working on. The underactive bladder is a real problem for many and it seems there is interest in helping us, thank God.

I wish you fine doctors at Stanford a windfall of positive results!

Calling all underactive bladder patients!

Stanford Biodesign is an innovative program located in the heart of Silicon Valley focused on solving meaningful clinical needs. Our team, composed of engineers and physicians, has a mission of helping patients with underactive/neurogenic bladder. Patients are at the heart of innovation – it is their need for better solutions that is driving us forward.

Therefore, we are looking to talk to you about your experiences to understand the issues of day-to-day management of your bladder. In return, we may be able to help you become one of the first patients who is finally free of self-catheterization.

If you or someone you know has been diagnosed with underactive/neurogenic bladder and is interested in helping advance underactive/neurogenic bladder research, please send an email to UAB.research.timm@stanford.edu with a subject “UAB research” and we will take it from there. Come be a part of helping the thousands of other individuals with this condition.

Sincerely,

The Stanford biodesign fellows

Mike Carchia, MD

Véronique Peiffer, PhD

Craig Stauffer, MD

Rich Timm, MS

Support for Children Learning to Cath

Dear Trudy,
I stumbled upon your site in my search for information about neurogenic bladders. Perhaps you or the broader bladder community can help me. I am curious if there are any other moms (or dads/families) out there that can offer advice, guidance, direction, maybe overall support for this mom in flux. My 6 year old daughter was born with a tethered spinal cord which has been corrected (twice) and in connection a neurogenic bladder. She is 90% potty trained. She is able to go during the day but cannot stay dry at night. Given her age (“pull ups” aren’t “cool”) at 6 the reality of cathing is entering our lives. Bottom line with level 5 reflex and the bladder condition cathing will definitely be in her future. Mostly likely 2-3 times a day so we know it’s actually emptied. She is NOT a fan of it nor does she really understand. Doctors are recommending a “Stoma” (aka port through her belly button). They say it’s much easier to access, cleaner and convenient. Overall an “easier” way to go. It can be reversed and she will still be able to go during the day. I don’t want to make a decision based on it being “easy” though i’m sure for one that has to cath convenience is a factor. My question to this community is does anyone have it? Do you like it? How has it bettered your daily life vs. cathing?

Dear Friend,

Thank you for the question. I am not a doctor so I would not be the one to offer medical advice but there are organizations that might be able to offer advice. Organizations we endorse are found on the blog resource tab. In the book Beyond Embarrassment, there are many more resources.

You might try this one first. Underactive Bladder Foundation http://www.underactivebladder.org/

I have personally met the founder and he is an honest good man. He would be a good to start with.

I hope all goes well, Trudy

Dear Trudy,

I am looking for an online support group for kids who have neurogenic bladder and have to self cath every day. Can you help?

Thanks,

Dear Friend,

I am not sure where you can find support groups for kids. Perhaps some information from the resource page on the blog and book, as well, will help.

Kids love to hang out and just be around other kids. Perhaps some would be too shy about discussing toileting with others.

I know from working in a school and going to the nurses room to cath myself there are several students who do the same thing every year. These kids go to the restroom and take care of business so they can go back to the halls and enjoy their friends. They consider it a quick in and out so they can get back to life.

If you feel like you are the one that needs a support group (I totally get that feeling, because as parents so many crazy things thrown at us) please call me. Email and I will send you my number. I know you’re afraid for your child and it is hard. Please try to see this through your child’s eyes. He will forever cath so this is normal for him. No sympathy needed. He will get on with it and live a good life, I am sure. Not long ago I watched a great documentary from Net Flex. Called When I Walk, It was great and I encourage you to watch it. It was about a young man going through life losing everything,walking, all of it, because he had Multiple Sclerosis. His mother gave him no sympathy. She was his cheerleader. She tells him, “You have one life, go out there and live it, think of all that have to live in slums! You do not live in a slum!” Please write and let me know what you think.

I hope this helps, Trudy

Are you Searching? Beyond Embarrassment can help!

Dear Trudy,

Hello all. I am a XX year old woman recently diagnosed with Neurogenic Bladder. I have a long history of UTI’s and urine retention which I chose to ignore for way to long. So now I am left with a bladder that does not contract at all. I have no neurological issues, feel healthy otherwise. But am told I need to self cath for life. I am looking for some inspiration from some women that have the same problem. The day to day is killing me emotionally. Any positive input would be great as I am new to this!

I assume you self cath….for how long have you been doing this? Fortunately I have been infection free for a while. Beside the normal bacteria in my urine from the self cathing. All 3 Dr’s I have seen said that is normal and as long as I have no symptoms of infection I am good to go. So fingers crossed that it continues this way. I want to lead a normal life again, although it is now a new normal.

As far as the antidepressants, I really just started them so I have a feeling it will be a while before I am off them. I was never depressed a day in my life. The actual anxiety is what kills me. My ultimate wish is to be this strong woman that prevails and continues a normal existence. But I know it will take time.

I am sure this is all in your book which I purchased on Amazon yesterday. But just looking for the inspiration….so for that I thank you! Just your responding to me is huge!

Dear Friend,

You are exactly who I write the book for. I wrote it for me too. We women who have questions and are searching. I hope you will find answers. When I was first diagnosed my burning question was how did this happen to my body?? You will find all of the causes that we could find. When you see all the causes you must understand that you are not alone, unfortunately you have a condition that many choose not to talk about.

Let’s start a conversation.

The depression will get better for you I hope, it did for me. I have a whole depression chapter in my book. It is a grieving you need to do. You have lost something and you are feeling the loss. Someday I hope you will wake up and feel like it is your new normal. Please seek help. Being alone with your despair is not good. Share with your doctor and someone close to you.

It does not make the bladder infection pain go away or the inconvenience any easier, I know. Greif is hard,

“Watch your way then, as a cautious traveler; and don’t be gazing at that mountain or river in the distance, and saying ‘How shall I ever get over them?’ but keep to the present little inch that is before you, and accomplish that in the little moment that belongs to it. The mountain and the river can only be passed in the same way; and, when you come to them, you will come to the light and strength that belong to them. ” – M.A. Kelty

“The world breaks everyone, then some become strong at the broken places.” – Ernest Hemingway

Healing Path Quotes

Let me tell you what I started doing. My kidneys are not doing so well because of my back to back infections. I experienced depression, as well, that was heard to shake, not long ago. So on Sunday evening I started serving food at the local homeless shelter. I am not kidding this is better than anything for my depression. This simple volunteer job has helped me with feeling appreciation for all that I have, and helps me to take my mind off my body.

I hope you will find a solution for yourself and find what works for you. Most important is, do not give up.

Trudy

Free eBooks of Beyond Embarrassment through Story Cartel

Read eBook Beyond Embarrassment: Reclaiming your life with neurogenic bladder and bowel for free.

All of the books you see on Story Cartel are free in exchange for your honest review. Discover your next favorite book and support the community of authors.

Beyond Embarrassment is free for a limited time.

Beyond Embarrassment is free for a three weeks, starting now, in exchange for your honest review, you have one week after the three week launch, to complete your review.

For book lovers, Story Cartel is a resource to discover great books and fresh authors; for authors, it’s a platform to build deeper relationships with readers. Our book has met the guidelines, so we are able to launch our book on Story Cartel.

You will support us, JoAnne Lake and Julia Parker, by leaving your honest review?

Beyond Embarrassment is completely free for a short time, but in return you support us by leaving your honest review, whether good or bad, of our book you downloaded from the website. Your reviews help us market our book and gives us valuable feedback to improve our writing.

Reviews can be left of Beyond Embarrassment on:
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•Anywhere you buy your books

Now go to storycartel.com and get out book for free!!

Third Stage Wake-Up Call: KIDNEY Health

Just as this blog, TrudyTriumph.com has evolved and progressed over the past few years, so have I. I started the blog to unload thoughts regarding the fear and anxiety I experienced as a urological patient with neurogenic bladder and bowel. As my body continues to morph, I count on you the reader to be in the wings; as I cheer for you, you can cheer for me (I hope). Life is never stagnant and as we exist, our form is always adapting and changing. It’s a law of physics! As my body changes, I need to constantly remind myself that my soul and attitude are primary to my contentment. Aging is an indication of our bodies wearing out. I just want to take the process a bit slow.

Speech by Trudy Triumph at CURE UAB Symposium, Denver CO

I was invited to speak at the 2nd International Congress on Under-active Bladder – CURE UAB, Denver CO. 12-3-15.

CURE-UAB is the only meeting dedicated to underactive bladder. The conference should help to create awareness for the aging UAB. The goal of CURE-UAB is to dramatically increase public awareness and translate research results into clinical care that will improve health outcomes in older adults.

I was invited to speak at the CURE UAB Symposium because I write about the underactive bladder. I am also a patient. I use an intermittent catheter, my kidneys are wearing down. I am a patient, but I refuse to be quiet because our voices need to be heard. I feel thankful to have an opportunity to share the patients voice.

My Notes.

Intro

I am one of 5 million people in America with bladder problems.

I feel humbled and honored to stand before you and right now.

Thank you for making this a priority.

You are working to make my life better and others as well.

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

situation that you wanted to run from.

I want you to understand this walk I am on and to get an idea of my challenges.

To see that it takes a lot to have my head held high in a society, that finds it is acceptable to make jokes, about a life threatening, sometimes humiliating condition.

I want you to understand why I write a blog and have written a book about my paralyzed private parts.

Body

My Early Symptoms were gradual over a period many of years…
•My urine flow became weaker and weaker
•At times I had bowel accidents as I walked
•I was lethargic and depressed but luckily for me I was working as an elementary PE teacher so I had little opportunity to give in to how tired I felt. My symptoms just made my job really hard.
•Food did not taste good
•Had a pain in the side of my body that would not go away.

Finding help

I went to several doctors was offered stool softeners, antidepressants for irritable bowel syndrome and depression.

This condition is difficult to diagnosis

Beyond Embarrassment: The Launch

I want so 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.

No I am not Crazy, I have a Bladder Infection

I realize lately I have been complaining a lot about my wellbeing. 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 . . . .

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