Does it Keep You Up at Night? How to Find Reliable Medical Information In-Between Doctor Appointments So, you had your doctor’s appointment in the morning and you’re replaying the appointment again in you head. The doctor reviewed your health status and gave you a list of To Do items that he’d like for you to…
Posts Categorized: Good Attitude
“Spring passes and one remembers one’s innocence. Summer passes and one remembers one’s exuberance. Autumn passes and one remembers one’s reverence. Winter passes and one remembers one’s perseverance.” ― Yoko Ono https://www.goodreads.com/quotes/tag/aging Many times, bladder and bowel problems go along with aging. My birthday is this week and to be honest with you, aging has been…
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…
I wrote my memoir as I blogged about the topic of neurologenic bladder over several years. My story is unfortunately common because bladder problems many times go undiagnosed and haunt many. Imagine my surprise when I discovered that my many symptoms were because of a broken bladder. I had no idea. Then imagine my second…
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…
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
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