Recently two important questions were submitted via the website about our book, “Beyond Embarrassment.” I’d like to take this opportunity to share them with you and give you a bit more insight into what it has meant for me, living beyond my neurogenic bladder and bowel. The EASY one, relates to our book cover: “Why…
Posts Tagged: support
I don’t know about you but I grew up in a rough neighborhood. It was rural Prunedale, California. Our school and playground got scrappy. I don’t remember any of my friends asking me how I felt. We just ran as fast as we could to the wall ball area so we could be first in…
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…
10 ways to find your joy Find joyful books, How about, Marley and Me? Find joyful people. Celebrate what you have, even the little things. Be creative. Help another. Organize a drawer. Take a load to Salvation Army. Stay away from the news. Forgive past grievances. Think of something that you can smile about. MY…
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
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!
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.
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.
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.
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.
I went to several doctors was offered stool softeners, antidepressants for irritable bowel syndrome and depression.
This condition is difficult to diagnosis
TITLE INFORMATION KIRKUS PICTURE
Reclaiming Your Life with Neurogenic Bladder and Bowel
JoAnne Lake and Julia Parker
Triumph Media Press (241 pp.)
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.
Like a ring of girlfriends we need to band together to offer support and acceptance. Perhaps your story can help someone. Please copy and paste questioner and send to; Trudy@writeme.com
Sometimes I think it is sad that I write to strangers because the people who love me would rather not know.