The Theme of Beyond Embarrassment is shed the shame and stand proud!
Questions & Answers Part 1 of 2
Q. 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.
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Book, Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel, coming this Fall
We are so excited to share with you the cover of our book. What I find surprising is that as I have been showing the cover not a single person has asked me about the fig leaf on the cover. Well Adam and Eve were embarrassed in the garden…Aren’t you glad they did not try to cover themselves with a Poison Oak Leaf? We would never be…
It is starting to get exciting. Here are some blurbs to get you ready for a great read.
Blurbs (ReviewCover 5s)
Beyond Embarrassment is for everyone who has ever had to face a daunting medical or physical challenge. It is truly inspiring, offering suggestions for managing life’s hurdles. I was engaged with JoAnne’s story and have no doubt others will be too.
While I was prepared for the book’s medical content, what really made a lasting impression is JoAnne’s honest, forthcoming and will-to-succeed story. None of us wants to end up with a neurogenic bowel and bladder, as JoAnne shares, but few can overcome what could be such a life halting condition, as she has done. It is within her generous spirit to tell about her experience. Her goal is to help others avoid the show stopping situations that she had to confront. I particularly like the Knowledge Nuggets and Tips. Each highlights points that JoAnne feels would be of particular importance to readers. And, I agree, they are!
I strongly recommend that health care professionals read this and share with their patients who would benefit from JoAnne’s story. It will make for better, more understanding practitioners, and enhance their patients’ will to succeed.
Elaine Plummer, RN, BSN
Always Discreet Ambassador
A “very powerful and important book . . . an impressive achievement.”
Jonathan Kirsch, Attorney, Trademarks, Publishing, and Copyright Law
“Beyond Embarrassment is a book that helps friends, family, and those afflicted with a Neurogenic Bladder understand and deal with it. As our population ages, you know or will know, someone with a Neurogenic Bladder. Problems develop from hereditary genes, from accidents, from trauma, from aging, from diseases totally unassociated with bladder issues.
JoAnne Lake has studied and written a face-saving book for those who have to deal with this condition. Frank, open and researched to the max with Julia Parker, it explores the ways of dealing with this malady.
An excellent resource book and one that lets you know you are not alone and can avoid the embarrassment.”
James A. Misko, Award Winning Author of As All My Fathers Were and three other novels.
I am offering to help authors develop story lines and plots for characters with bladder and bowel disabilities on this blog and on Twitter. My rationale is that these very people have been the brunt of jokes for too long and it is high time that the media wakes up and gives some prime time to help those with disabilities reclaim acceptance and dignity. Jokes that are common are offensive and degrading and even harmful because they result in fear of being discovered. Therefore, people avoid being open about this subject. Often people wait too long for help because of the shame and fear.
Soon Biosleuth and I will have a book available. The title is Beyond Embarrassment : regaining your life with neurogenic bladder and bowel. We are in the process of getting blurbs for the cover of the book. We have asked Jim Misko to write one for us. He is an award-winning author: my publishing Mentor, through the Palm Springs Writers Guild. Since he is writing another book, I suggested to him that that he consider cultivating a studly character, a man’s man, one who is popular with the women, looked up to by the town folk, but because of his military service is incontinent. He could go into the trials associated in finding the protection he needs. Working through the loss of whizzing at the urinal, to becoming proficient at using a catheter in the stall and then needing to dispose of the catheter privately, because male toilet stalls don’t provide much privacy, let alone a secluded disposal system for waste.
Here are other character development ideas for all of you authors out there:
For years I have had a neurogenic bladder and bowel. My sacral nerve is damaged – it doesn’t control my bladder and bowel like it used to. My bladder and bowel are paralyzed and flaccid. For my bladder I use a women’s intermittent catheter and I eat a lot of raw foods and try to keep active to keep my bowel moving. Today I want to write about neurogenic bowel . . . Or my very sluggish bowel. The kind of bowel that if I ignore and eat anything, my gut will stop up like a batch of bacon grease kitchen pipes.
The primary symptom of my neurogenic bowel is dire constipation, (a rock hard stool that could be sold as bricks if I wanted another business) if I do not move around or eat well.
Favorite Fresh Foods
In the morning I start my day with a berry shake and often I eat fresh avocado or some other raw item. I always keep cut-up vegetables handy.
Eating like this gives me energy. I find that I do not need to take stool softeners to help with my sluggish bowel if I pay attention to what I eat. My rule of thumb is to try to make sure I eat something that is uncooked and contains only one ingredient at every meal.
Stem cell research is touted as the next tool through which medical breakthroughs will be achieved. Since 2004, millions of dollars in grants have been awarded to educate the public and fund stem cell research in California (CA), after a proposition was approved by voters to create the California Institute for Regenerative Medicine (CIRM). 1% of that funding, to date, has been set aside for urinary tract/kidney disease research [https://www.cirm.ca.gov/our-progress/stem-cell-research-funding-overview]. But stem cell research is controversial, right? Doesn’t it involve the use of embryonic stem cells which are derived from harvested embryos? Aren’t people worried that people will choose to terminate pregnancies for profit and that would be an ethical issue? No! – Not all stem cell research uses embryo-derived cells. Stem cells are found throughout the body in various adult tissues including bone marrow, which can be used to obtain stem cells, referred to as “adult stem cells”. These are the cells that your body produces naturally, that inhabit various tissues that need to be regenerated constantly: bone marrow (blood cells), adipose (fat) tissue, mesenchymal cells, or even the dental pulp of your teeth contain adult stem cells. Mesenchymal stem cells (MSCs) derived from the bone marrow or from within the vasculature within fat tissue [Zuk, P. A., 2001] can ultimately become bone, cartilage or fat cells. Research studies have shown that MSC’s can mature and incorporate into living lung, liver, heart [Li, J. H., 2008] and even the brain. Stem cells can also be harvested from muscle (a source that is easily accessed and available in large quantities). Although embryonic stem cells were initially favored as it was thought they were more flexible to become any kind of tissue, this has been shown to not be the case. Adult MSC’s have been shown to be just as efficient in developing into vascular cells, for instance [De Coppi, P., 2007].
Last night I was invited to join friends for a free concert. What a delight.
The evening was sponsored by Umbrella Ministries, a nonprofit, strictly volunteer, Christian organization that reaches out to mothers who have lost a child. The evening was full of hope and promise. The founder, Daisy, got up and spoke about the complete devastation she experienced when she lost her child. The words she wrote were put into a book eventually, and used to help others. She included words of scripture and practical advice that continue to heal broken hearts.
The power of Scripture. The power of words. The power of not feeling alone.
There is that part of us, in our very core that begs to have people understand us. Sometimes mere words cannot be spoken that convey what you want to say or even what you want to hear. Feelings and emotions can be too sharp; too painful. Some topics are just too emotional, too personal, too embarrassing, and too raw.
Last night as I sat feeling tender and very glad I was a part of something bigger than myself, it got me to thinking: this blog that you are reading started much in the same way as Umbrella Ministries.
Journaling is like a little seed . . .
The needs of my body and soul are pretty basic:
2.A clean restroom
3.Plenty of sleep
Do I ask for too much?
I keep up very well with my family, most of the time. They do not offer me sympathy because I do not have a working bladder or bowel. They do not notice and do not care because there is more to our life together than my physical limitations. I lead a full life and enjoy most of it, but not always.
Just because I do not talk so much to my family about my restrictions in life, it does not mean that I do not have them. My fleshly constraints sometimes impact those I love the most and they do not even remember the reason why.
At night my muscles ache and I have severe pelvic pain. If I complained to my domestic dears every time it happens I am sure they would avoid me like the plague. I try to foster wonderful experiences with my family during the day.
At night I get bone tired. Stay out of my way, I need my sleep. I can become short-tempered and irritable. But, for the most-part, my family knows this and steer clear of me.
Just when you think you have seen it all, along comes a new product that takes the cake.
A garment protector that adds freedom to your step . . . On extra hot days it can offer a breeze down below. A freedom only the brave (or more immodest) once experienced.
How about a cotton adhesive panty alternative? It even offer options! The original “patch” is cotton fleece that is attached to the crotch of any pant. They come in different colors: tan, black, white and of course denim color, that can be worn in jeans, shorts (well if you are a gal), exercise wear and all sorts of pants. The colors offer a discreet protection from female drips and moisture that we as women deal with which makes this product a win-win situation. Regardless of the situation, they are perfect for travel, exercise, maternity, sports, and the needs of men and women in the military. Did you know that military is included because in the field they do not have an opportunity to stop of at the laundry mat and because of a rash that can occur for wearing dirty underwear going commando is the safest choice.
Last Saturday I attended my very first meeting of the Palm Springs Writers Guild. Our Guest Speaker was Ms. Sheryl L. Roush founding member of Speak and Market like a pro She was a very motivating speaker. She gave us an outline and tools to write for our own speaking engagements explaining our books. That night I was so motivated by what I had learned, I went nocturnal and completed the steps she taught us.
I selected my main thought, ISOLATION NO LONGER, came to mind. Then I brainstormed ideas from my main point. I followed her out-line, and wahah… Here is my explanation, well some snippets anyway, of the book waiting to be published for you.
My name is Enid , I am 50 years old, and I live in Puerto Rico. At the age of 24 I was diagnosed with invasive cervical cancer. Consequently I had to undergo a radical hysterectomy and radiation therapy. Approximately 6 years ago I was diagnosed with neurogenic bladder as a result of the surgery and radiation…20 years later! And regardless of how cautious I am when I self-cath, the bacteria has “colonized” my bladder. Now every 3-4 weeks (no exaggeration) I have to take intravenous antibiotics for 14 days since the ESBL e-coli bacteria has become resistant to all oral antibiotics. My doctors fear that eventually the bacteria will also become resistant to the IV antibiotics, but that there’s nothing else that they can do. They’ve suggested that I visit doctors in the U.S. but due to financial reasons and my job, this is not possible. Has anyone had a similar experience? Suggestions please. Thank you.
“Let Every Day Be Christmas”DSC_0811
by Norman Wesley Brooks
Christmas is forever, not for just one day,
for loving, sharing, giving, are not to put away
like bells and lights and tinsel, in some box upon a shelf.
The good you do for others is good you do yourself.
Peace on Earth, good will to men,
kind thoughts and words of cheer,
are things we should use often
and not just once a year.
Remember too the Christ-child, grew up to be a man;
to hide him in a cradle, is not our dear Lord’s plan.
So keep the Christmas spirit, share it with others far and near,
from week to week and month to month, throughout the entire year!
written December 17th 1976
by Norman Wesley Brooks
U.S. Design Engineer (1923–2002)
Now don’t laugh at me when I explain why I appreciate my bathroom trash can so very much! You will surely agree with me when you find out why. Now I know what you are thinking…a trash can for a counter..is she for real????
My toilet area is in a tiny little space with no counters, so the trash can sits next to my toilet. I have a procedure that involves a lot of steps and a great deal of waste (which is where that big trash can comes handy):Long gone are the days when I could simply pee like a racehorse, wash my hands and leave.
http://dianedevine.com/ When I was a young girl my father had a picture that hung in his home. I...
Having coping strategies in place is more than important and necessary for a healthy productive life. Our goal is to go out and live our lives.
Often pain is involved, concerns for possible embarrassment if we have an accident, and a factor of feeling isolated because we have a great fear of others discovering that we have toileting issues. Often we have bladder infections that render us helpless until we get what we need. Our goal is to live life to the fullest. Here are some coping strategies that help me.
Many people ask me about incontinence and think because I have both bowel and bladder incontinence that it must be a death sentence. Well I am here to remind you that it is not and despite some hustles, life goes on.