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.
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
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.”
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.
Not long ago I received this comment from the Ask a Question part of the blog.
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
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…
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?
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.
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.
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.
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.
Do you have any suggestions to help me become a better writer? If so, what are they?
Brainstorm, edit and read, read, read.
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.
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.
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.
There is always a time about mid-month when I see my medical supplies dwindling. The package is emptying and I know that my next box will arrive in a week or so. When anticipated arrival does arrive I say a quick prayer of THANK YOU GOD because I know that that box contains lifesaving supplies for me.Or what about the moment the pharmacist says that is the end of your refills. Does one call the doctor imminently for a new prescription or wait and run the risk of not having what you need when your doctor is out of town or the office is closed? These are real situations that those of us with chronic illnesses find ourselves in.
Just this month I experienced this drama, a frustrating situation because when the pharmacist told me that I had no more refills I notified my doctor’s office. They mistakenly thought that I was asking for more mediation. The problem for me is that I did not need more medication at that time, I was just planning ahead. Now I have a compounded liquid antibiotic that has a short shelf life in abundance. My husband thinks I should just buy it, I will. I appreciate my doctor and I will just pray that when I use this medication that it will still be good. Besides if I do not use it I will also have my insurance company to deal with because like all of the medication and devices in my life there are major costs involved.I have doubts that the insurance will pay for the needed drug twice.
It is a good thing I have a doctor’s appointment next week. I am courteous what the doctor thinks I should have done.Should I order when am desperate or notify the doctors office that my prescription had run out?
There are many folks that save up for the big one. The big earthquake, the volcano eruption or heaven forbid the dirty bomb. Very ugly scenarios for sure. I know during the Y2K scare I loaded up on toilet paper, Clorox bleach, flour, sugar, and canned goods. It all came to naught but I was prepared. I still want, from the bottom of my heart want to stock up on medical supplies.
I am unable to stock up on my medical supplies. For those I am truly dependent on the mail delivery system. The company that produces them. The airplanes or trains or automobiles that transport them and then the blessed delivery man that drops them off. We are also dependent on the insurance company monthly hand-out.
I am not the only individual in this predicament. Many of us rely on medical supplies. I rely on catheters, a compounded antibiotic. Some others rely on insulin, wound care supplies, special foods, and so many other lifesaving substances.
It would be proper for the insurance company to let us have a little extra for an emergency? We carry spare tires in our cars. We have back up batteries in our smoke detectors. We have substitute teachers in our schools. We dam rivers for a reserve water supply. We carry extra gum in our purse just in case we have to whisper in an ear. I have alternative shoes for each outfit.
Perhaps it is a “consider the lilies of the field” situation. I need faith.
It is a good thing I have a doctor’s appointment next week. I wonder what the doctor thinks I should have done? Order when am desperate or notify the doctors office that my prescription had run out? I am sure you get my drift. How do you feel at the end of the month?
This is the second post about heavy metal poisoning and neurogenic bladder and bowel. This is a post you might consider giving to a young person that thinks smoking cigarettes makes them look cool. Cigarette smoke is an excellent source of heavy metals and one of the sure ways to bladder cancer. Perhaps a young rebel might consider how cool it is to need to wear diaper or have bag strapped to a leg to catch the urine because there bladder is gone.
Heavy Metals Part 2
This is a continuation of my blog about heavy metals and how unknowingly we can be exposed and how that exposure can cause nerve damage that can lead to neurogenic bladder.
Here are some examples of common exposure. After dry cleaning clothes I try to air them out, but mostly I try to not wear clothes that need to be dry-cleaned. I always thought it was because I did not like the smell, now I understand that I am perhaps a bit more physically sensitive. I like to quilt and was given some old wool. I got sick before I discovered it had been dry-cleaned.
I did not realize that old tires could pollute the garden. It was tempting for me to use old car tires to warm up the soil for bigger plants. Now I know better to use them. Sure they can make your tomatoes grow like gangbusters, but the toxins will leach out and cause heavy metal exposure. Mascaras can have some heavy metals. There can be arsenic in mascara. To help me avoid this, I have permanent makeup on my eyebrows and eyeliner. Works for me!
A lot of health foods and supplements are really from China and packaged in the USA. Recently, I bought a veggie protein powder at a reputable health food store. Upon inspection I discovered it was manufactured in China. It is amazing to me that we need to pay attention to this. Packaged in the USA is not the same as made in. Watch out! It is common knowledge that the FDA does not have the same standards for supliments as it has for prescription drugs. So if we consider that other countries do not have the same growing standards that we have in the United States then buyer beware.
Some of the bad metals are lead, cadmium, arsenic, aluminum, and mercury. Heavy metals are heavier than water. They are found everywhere: in our water, cigarettes, air, and food. At times chemicals and fertilizers used to grow our food include some heavy metals, so our bodies are exposed to plenty of them. Since I grew up in an agricultural community, I was surrounded by fields and exposed to some of the spray from crop dusters flying overhead. It is unfortunately easy for our systems to be overcome by the presence of heavy metals. It is not a matter of if we have heavy metals in our bodies, but how much.
Toxins can have a drastic effect on the bladder. Exposure to heavy metals may cause a variety of central, peripheral, or autonomic nervous system injuries. Heavy metals such as arsenic can be found in drinking water and are known to cause many cancers, including bladder cancer10. Cigarette smoking is known to generate more than forty-five known or suspected chemical carcinogens that can lead to numerous health problems, including bladder cancer11.
What all of this boils down to is that heavy metals are everywhere and that some of us are a little more sensitive to heavy metals. I know for a fact that I fall into that catagory. And exposure to heavy metals can lead to nerve damage which can lead to neurogenic bladder and bowel.
Carnahan, Jill M.D., “MTHFR gene mutations and glutathione production,”
posted Oct 5, 2013, accessed April 9, 2015, http://doccarnahan.blogspot.com/search?q=MTHFR.
Mink PJ, Alexander DD, Barraj LM, Kelsh MA, Tsuji JS., “Low-level arsenic exposure in drinking water and bladder cancer: A review and meta-analysis,” Regul Toxicol Pharmacol. 52, no. 3 (2008 Dec): 299-310. Epub 2008 Aug 26. Review. PMID: 18783726. doi:10.1016/j.yrtph.2008.08.010.
11. Fowles J, Dybing E., “Application of toxicological risk assessment principles to the chemical constituents of cigarette smoke,” Tob Control 12, no. 4 (2003 Dec): 424–30. PMID: 14660781 PMC: 1747794. doi:10.1136/tc.12.4.424.