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Extra Supplies to Pass On

Extra Supplies to Pass On

A reader has some new supplies that she wants to pass on. I understand the devices we use are expensive, but just a reminder: if the seal is broken in transport, throw it away. And to our kind benefactor, Thank you! We are all better, together. God bless you for...

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Current Events

Current Events

JoAnne Lake is available for readings and presentations. Contact her at, joanne@trudytriumph.com

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First Encounter with CompactCath, my Free Sample

First Encounter with CompactCath, my Free Sample

Currently I use Speedicath by Coloplast.
Currently I use SpeedicathIMG_5584 by Coloplast. For those who do not know Speedicath is small and looks like a skinny tube of lipstick. The complaints I have heard about Speediacath is that it is too short and one sometimes has to touch the lubricated ridged tip to insert it easily. This catheter has served me well over the years.

Now I am provided with another option.IMG_5579
The sample I received was size twelve french. Fourteen french is what I normally use. Measure

My first time using the catheter I definitely needed

two hands. ( I can’t resit this tid bit. Most medical pictures have a woman separate her labia with one had and insert a catheter with the other. For my book Beyond Embarrassment I had a graphic artist change that in a picture, because just by the fact of a woman opening her legs her labia opens as well. Which is a good thing for the first time I inserted this new catheter!) I needed one hand to hold the device and one hand to pull the tubing out of the wound container. As I pulled the tubing through the protective sheath, the white cylinder you see in the picture. (which is great because I am sure this will cut down on infection) I got a little pinch because I did not pull it down far enough.

I then pulled on the wound tubing to insert the catheter in my bladder. There is no lubrication to the catheter yet the catheter is easily inserted. An excess of lubrication can cause a yuky build up over the day so it is nice that they have this feature. The urine flowed out quickly.

The ring shape made it easier to hold.

Countless times I have dropped a catheter in the toilet. Not a fun fishing expedition. This is a part of the design that is surprising to me. It is secure in my hands and easy to held while using.

I am sure insertion will get better with practice.

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New Back Cover of Beyond Embarrassment

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

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Summer fun . . . Do not let a Neurogenic Bladder Stop YOU

Summer fun . . . Do not let a Neurogenic Bladder Stop YOU

I was accommodated at this stop.
I was accommodated at this stop.
My memories with my grandson were the best.
My memories with my grandson were the best.
Breathtaking beauty, I almost missed because I was not sure how to handle my neurogneic bladder.
Breathtaking beauty, I almost missed because I was not sure how to handle my neurogneic bladder.
My Husband Randy and Grant.
My Husband Randy and Grant.
Now that Summertime is almost here I want to tell you about a Sheri Griffith River Rafting Trip, I took in Utah last April.

I DID IT!!

Well of course a river rafting trip means a day long excursion with no restrooms. Because I use a woman’s intermittent catheter to pee, excusing myself to take a swim is not an option.

I also get concerned with sanitation. How clean is the river water? What about my neurogneic bowel? AN ENTIRE DAY, seemed overwhelming.

Luckily I have a husband that does not have the same concern. He told me that even if the worst happens, you will have lasting memories. I am so glad that I followed his advice.

It is easy to fall prey to worry. I had no reason to feel as I did. The day went well because I made some arrangements with the owner before I went out.
1. I was honest and told them that I have a neurogneic bladder and bowel. That meant that I had to have clean water and a portable toilet.
2. There was a chance that I would need to stop along the way.
3.My back was fragile and I needed to sit forward.

No problem, when I arrived I rode with the owner of the company and sat forward in an ore raft.

I had chance to talk to him about other accommodations he had made with others with all kinds of disabilities. He said that they do it all of the time.

I give this tour company my highest rating. I thank them from the bottom of my heart for giving me an exhilarating experience and great memories with my family!
******************************************
About the tour
Hidden along its path are wonderful steep-walled canyons that were carved by this powerful force of nature over the thousands of years. To experience the Colorado River up close and personal, on a few-day Colorado River rafting trip, is a lifetime experience not to be missed.

http://www.griffithexp.com/

Utah’s Premier Company | Rafting Trips out of Moab UT on the Colorado River – Sheri Griffith Expeditions
About the Company
http://www.griffithexp.com/why-pick-us
Sheri Griffith, Why PICK USWhy Pick us| Utah’s Premier Company | Rafting Trips out of Moab UT on the Colorado River – Sheri Griffith Expeditions Sheri Griffith River Expeditions has received numerous awards for business ethics and community involvement. Including the prestigious “Best of State Award” for River Outfitter and is the only Moab based outfitter to be recognized by National Geographicas one of the “Best Outfitters on Earth.”

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Kidney Kindness for the Neurogenic Bladder

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..

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Calling all Underactive Bladder Patients!

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

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Awards for Beyond Embarrassment