Allow me to give you the eBook, “Beyond Embarrassment.” My husbands birthday is tomorrow so giving is in the air. Please enjoy and share this with your friends. Free on Kindle May 21-25 “Beyond Embarrassment: Reclaiming Your Life With Neurogenic Bladder and Bowel” by JoAnne Lake with Julia Parker MS, MLIS and Lora Plaskon MS,…
Posts Tagged: Beyond Embarrassment
Trudy talks about Pelvic Pain: Pelvic pain has many causes; endometriosis, menstruation, constipation, for me I am sure mine was caused by bladder infections that cropped up nonstop, because of my underactive bladder. With all of the drama and head games swirling in my head I, at one time, I lost my identity. Was I a sexy…
Question for Trudy: Hi! First I want to say thanks for being brave and speaking out about this problem. I have small, flaccid neurogenic bladder. My question is should I wear diapers? I do wear menstrual pads, but sometimes they are not strong enough to keep the fluid in, so I must change them from…
Question: Hi “Trudy, I’m starting to urinate on my own after 5 months of a neurogenic bladder. Mine was caused by a viral infection of my brain and spinal cord. My diagnoses were Acute Disemminated Encyphalomyelitis and Transverse Myelitis AND Meningitis. A pretty big attack to survive of my nervous system. I’m happy to share…
Question: Dear Trudy, I would like to be part of a support group of neurogenic bladder. I am very concerned about it as far as the urologist advised me to self-catheter twice a day. I am in shock. My husband is helping me right now but I have to get used of it. Also I am…
When we wrote Beyond Embarrassment, the goal was to offer comfort and compassion to those dealing with neurogenic bladder and bowel, because this disability is so embarrassing. The tag line, for Trudy Triumph, the blog and the book, is…Shed the shame and stand proud. This award shows that the judges understood the point of our book and I am thrilled…
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.”
“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
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?
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..
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?
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
I am looking for an online support group for kids who have neurogenic bladder and have to self cath every day. Can you help?
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
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