Breathtaking beauty, I almost missed because I was not sure how to handle my neurogenic bladder.
My Husband Randy and Grant.
Now that Summertime is almost here, I want to tell you about a Sheri Griffith River Rafting Trip, I took in Utah in April.
I DID IT!!
Well of course a river rafting trip means a day-long excursion with no restrooms. Because I use a woman's intermittent catheter to pee, excusing myself to take a swim is not an option.
I also get concerned with sanitation. How clean is the river water? What about my neurogenic bowel? AN ENTIRE DAY, seemed overwhelming.
Luckily I have a husband who does not have the same concern. He told me, "Even if the worst happens, you will have lasting memories." I am so glad that I followed his advice.
It is easy to fall prey to worry. I had no reason to feel as I did. The day went well because I made some arrangements with the owner before I went out.
1. I was honest and told them that I have a neurogenic bladder and bowel. That meant that I had to have clean water and a portable toilet.
2. There was a chance that I would need to stop along the way.
3. My back is fragile and I needed to sit forward.
No problem! When I arrived I rode with the owner of the company; we sat forward in an oar raft. This gave me the chance to talk to him about other accommodations he has made with others who had all kinds of disabilities. He said that they do it all of the time.
I give this tour company my highest rating. I thank them from the bottom of my heart for giving me an exhilarating experience and great memories with my family!
About the tour
Hidden along its path are wonderful steep-walled canyons that were carved by this powerful force of nature over the thousands of years. To experience the Colorado River up close and personal, on a few-days Colorado River rafting trip, is a lifetime experience not to be missed.
Utah's Premier Company | Rafting Trips out of Moab, UT on the Colorado River - Sheri Griffith Expeditions
About the Company
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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.
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 to a different waiting area across the hall and observed several patients in wheel chairs. My stress level was a little high, but it did not come through with my blood pressure because that morning I participated in a over the top exercise class. Remember that physical exercise is good for blood pressure and high blood pressure is not good for your kidneys.
When I finally saw the doctor, he smiled, “ummm, your tests look pretty good.” I was thinking “If I have third stage kidney failure stamped on my chart, “How good is that?” Let me tell you what I learned from my doctor. He did not think I should even be there because usually he does not see patients until they were fourth of fifth stage.
I can live a long time this this condition. I am not sick yet and dialysis at fourth stage can be led off for many years. I walked out of there with a lighter step and will continue to be careful. Stay off the Advil, eat fresh fruits and vegetables. I do this anyway because it helps me with my neurogenic bowel.
All and all whatever looms in the future I will try my best.
How do you deal with difficult situations? Do you have a kidney story to tell? Please share.
Not long ago I was contacted by some doctors from Stanford, who are interested in connecting with those of us that have an underactive bladder. I tried to get the scoop, but was told it was a secret for a while. I am passing this along in case you are interested in contacting them. If you do decide to help these fine folks, please let me know how it goes. I told them that I might be interested too, after I found out what they were working on. The underactive bladder is a real problem for many and it seems there is interest in helping us, thank God.
I wish you fine doctors at Stanford a windfall of positive results!
Calling all underactive bladder patients!
Stanford Biodesign is an innovative program located in the heart of Silicon Valley focused on solving meaningful clinical needs. Our team, composed of engineers and physicians, has a mission of helping patients with underactive/neurogenic bladder. Patients are at the heart of innovation – it is their need for better solutions that is driving us forward.
Therefore, we are looking to talk to you about your experiences to understand the issues of day-to-day management of your bladder. In return, we may be able to help you become one of the first patients who is finally free of self-catheterization.
If you or someone you know has been diagnosed with underactive/neurogenic bladder and is interested in helping advance underactive/neurogenic bladder research, please send an email to UAB.email@example.com with a subject “UAB research” and we will take it from there. Come be a part of helping the thousands of other individuals with this condition.
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.
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.
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
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.
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Just as this blog, TrudyTriumph.com has evolved and progressed over the past few years, so have I. I started the blog to unload thoughts regarding the fear and anxiety I experienced as a urological patient with neurogenic bladder and bowel. As my body continues to morph, I count on you the reader to be in the wings; as I cheer for you, you can cheer for me (I hope). Life is never stagnant and as we exist, our form is always adapting and changing. It’s a law of physics! As my body changes, I need to constantly remind myself that my soul and attitude are primary to my contentment. Aging is an indication of our bodies wearing out. I just want to take the process a bit slow.
The first time I walked into the Virginia Mason Urology clinic, I was not prepared for what I saw. I was in a state of shock. Jolting my plans of a gigantic brackish lunch of briny fish and chips at the hospital cafeteria after the appointment, I read the words that cut deep. The sign did not merely say Urology Clinic, but rather, the sign that made me change my lunch plans, read Urology and Kidney Transplant. My immediate gut reaction, as I stopped dead in my tracks was, “Give me a break; shouldn’t they shuffle the really sick people in the back and discreetly discuss Kidney Transplant in hushed tones”. There the sign was: front and center, staring me in the eyes making me want to flee the reminder that the future of harboring chronic bladder infections was ultimately kidney failure.
Now, I am still far from the transplant stage but I am walking down that trail, so, in the future you will see a few more posts regarding my kidneys; as I learn for myself kidney tidbits, I will share those with you. I will probably get some things wrong. REMEMBER, I am not a doctor; just a patient that likes to leak private information, whine and write.
About two and a half years ago my urologist noticed that my right kidney was larger than the left. I felt fine, I was not even concerned. Ignorance is bliss, they say. While the doctors were worrying about antibiotic resistance because my back to back bladder infections I gave no thought to my kidneys. There was really no discussion of them with my doctor, other than her telling me that she was watching them. I was unconcerned.
Then, the nagging pain in my back started. The aching, smarting, twinge, which I experience now, as I type this blog entry. I have had it for about 5 months. Over Christmas it was so severe that small kidney stones were suggested. My hands are a bit puffy which cosmetically does not bother me much. Sincerely, they look younger than before.
I decided to see a Naturopathic Doctor. I visited her twice and got an ear full. She said that there are five stages of kidney disease. The GFR (glomerular filtration rate) for my blood of “49” indicates that I am currently in stage 3 out of 5 toward kidney failure. She went on to say that the average GFR declines as you age, but a result of “60 or lower” shows that the kidneys are not functioning as well as they should.
Here are the stages of Kidney Health:
Stage 1: GFR- 90 or above: this indicates that the kidneys are functioning normally; it does not completely rule out kidney disease but is an indication that the kidneys are working well.
Stage 2: GFR 60-89: the function of the kidneys is slightly impaired.
Stage 3: GFR 30-59: the function of the kidneys is moderately reduced.
Stage 4: GFR 15-29: the function of the kidneys is severely impaired.
Stage 5: GFR 15 or under: the function of the kidneys is severely reduced and is often classified as kidney failure (often called renal failure)
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 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
By age 55, the pain was so intense it was enough to require a urologist’s intervention.
It turned out that urine retention had stretched my bladder so that 2 liters of urine were removed and left me prone to a bladder infection,
So I was taught how to use an intermittent catheter.
Dealing with the shame isolation and loneliness was hard..
When I left the doctor’s office on that fateful day after my diagnosis of urinary retention I was glad to know the root of my problems but I also I felt humiliated, defeated, and overwhelmingly embarrassed as well.
My many confusing symptoms were caused by a broken part…and to make matters worse it was…down there…
As I continued my daily life I had a menagerie of thoughts I needed to work through. Sometimes facing the world was difficult. To help process my thoughts I started journaling….. sometimes as prayers to God.
I had so many notes and scraps of paper with my innermost thoughts I decided to start an anonymous blog TrudyTriumph.com, under the pen name Trudy Triumph.
On February 12 of 2012 I posted my first blog entry sharing with the world about how I felt about my diagnosis of neurogenic bladder.
As I write to the world I imagine the reaction of my friends and family, I feel a bit queasy because, now they will have a peek into my very private life, just as you do now………………….
Part of me does not exactly want to be remembered in connection with a toilet, yet I see Urinary health as a last frontier of topics that need to have mature acceptance and an active audience.
Here are a few facts about my blog
Surprisingly more of my readers are men, yet when I write, I write to women.
My readers log on from around the world
My most looked at topic are those on intimacy and hysterectomy
I know from readers that people feel unheard and desperate and many are left with little help after diagnosis.
Many feel very isolated and alone, and afraid. When I attended a blogging convention is San Jose last summer I shocked participants when I told them what I wrote about. I wish I had one of those go pro cameras on my head, so I could record the faces of shock and disbelief.
Here I am in front of all of you not just pleading for help just for me but for others as well. Perhaps it could be because of back surgery, a vaginal hysterectomy or multiple sclerosis,
I do not know why I developed neurogenic bladder and bowel.
I do have some questions for you…
I feel as though I have had quality, caring medical care. I can live with a broken bladder and bowel but bladder infections continue. Just last month I was on two types of oral antibiotics.
A couple weeks week before that I was in the hospital with IV antibiotics for a kidney infection.
Chronic bladder infections are the bane of existence for me, for many of us with underactive bladder. I was given a short reprieve of about a year, using Gentimiasin, an antibiotic wash that I placed directly into my bladder. Unfortunately, I have become resistant to it.
The Yoyo continues
Now, that I have to rely on oral antibiotics again, it is not unusual for me, upon completing a regimen of oral antibiotics, to soon find myself afflicted by another UTI.
Having a year off from bladder infections …. Was great!
Unexpected bladder infections affect my work week, they affect my relationships and they shorten my life.
So my question to you is how can a colony of bacteria in a bladder be taken care of?
I am not alone in fearing bladder and kidney infections…
Here are some samples of written comments:
A post from a young man that is scared
Need some opinions here… …………………………………………..
Hey Friends, I am going crazy. In April I was hospitalized for a kidney infection. I started with UTI symptoms, again, cloudy urine, increased bladder spasms, fatigue, low grade fever, etc.
I found out I have 2 types of bacteria’s in my urine and one is MRSA. Has anyone ever had a mrsa uti? This scares me to death!
If I could write to hip I would say YEP..I am part of the staff infection club too.
A mother of a young child says
So tonight I was giving my daughter a bath and noticed her kidneys are really prominent.. Like u can see the outline and its freaking me out right now!
I find the letters about the kids hardest to read…
SO as you discuss my plight of UAB this weekend I plead with you to consider all of us that rely on intermittent cauterization. We certainly need your help to live a little longer. The subject of reoccurring bladder infections is important to discuss.
I have wondered why diagnosing Under Active Bladder is so difficult…
Urinary retention is difficult to diagnose. Especially in the early days before our bladders get so big. So many times those of us with urinary retention are diagnosed with fibermialga and given antidepressants.
How can you get the word out to other medical professionals that urine retention can be caused by so many things?
Is there a way to detect Urinary retention without the bladder becoming the size of a watermelon?
I have a wish list I would like to share with you..I wish that catheters could be sold in a drug store.
I wish they were easily available. There are times when I travel that I know if I get into trouble and run out I would have to go to an emergency room.
And If I have to go to the hospital to buy emergency catheters then how hard will it be without a prescription?
There is a reason for this…I traveled with a group of students to the very hot city of Kyoto, Japan and the catheters I took melted in the heat. Luckily I had another variety that was given to me. That situation could have been a disaster.
ANOTHER WISHI wish patients could spend more time with urological nurses to learn about living strategies. SO many of us feel isolated and alone because we do not know how to cope with the ever occurring accidents that seem to crop up at unexpected times.
Perhaps I could help set up a support system for patients with your guidance.
After working on the blog for a while I started the book with Julia Parker, the bright and very talented medical research librarian
Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel
The collaboration that happened was beyond my wildest dreams. So many people helped and contributed to the book
It is my deepest desire for others and myself to be heard
I feel an incredible responsibility for you to understand the human side of this condition.
The book is my Medical Memoir It is not just my voce but has other letters from patients as well
In writing the book I wrote about not only the physical part of my being but the spiritual as well. You will see a few scripture verses throughout the book.
I hope this part of my story will not be a deterrent to help others. I want my story to be inclusive
My goal in writing the blog and book is to offer others some lessons I have learned along the way such as
Be your own self advocate and partner with a doctor for the best health possible.
You are not alone.
Think of yourself as healthy and remember there is nothing to be embarrassed about.
Knowledge is power.
Tomorrow starts a new day.
My hope in sharing my story is helping others feel normal and making it easier for others to discuss bowel and bladder dysfunction.
Please remember this…
Neurogenic bladder and bowel are isolating conditions. We are taught as youngsters never to talk about that part of our body. So please understand that when we come into see you, we are shaking in our boots.
Bladder and kidney infections are not only hard and painful but they also scare us. Please do your best to help us with this dilemma.
Many of us haven’t even confided to our friends and family and we are having a difficult time coming to terms with what our condition means.
Recurring bladder infections
Becoming resistant to antibiotics and
Loosing kidney function
Many of us are elderly and so confused.
It is important for us to have living strategies in place for a working comfortable life, there is more to our needs than the medical side. We need practical advice.
Thank you for spending your time to understand this condition. It is my heartfelt wish that many will benefit from your hard work.
We have a book table set up please come visit us.
The Researcher for the book, Biosleuth Julia Parker will be there and is willing to help any of you better understand the new PUB MED cataloging system for medical research.
Our books will be on sale too.
The cost is $16.95, if you are interested in paying by credit card. Please log on to your own device to TrudyTriumph.com and follow the props to buy the book.
Our goal with this book is to help others. Because of this we are offering a package deal as well. If you order 12 or more books we will offer you a 25 % discount. Please come see us at the table.
Thank you for taking your time to better understand UAB. You will make my life better because of your fine work.
How could I have done better? What more could I have said?
I want to share the words I said at the launch. They were spoken with a lot of emotion.
So much of life is in the smallness of moments…but harder to mark. And even harder to remember….Tonight we are enjoying the grand celebration to mark the completion of a book, a book that took far too much of my time.
The deeper the difficulty fulfilling the dream, the brighter the outcome of the fulfillment. The sweeter the celebration.
I feel honored that you are here for our celebration.
Allow me to offer you some background on how this book actually came about.
Try to think back to a time when you faced a life changing
Situation that you wanted to run from.
When I left the doctor’s office on that fateful day after my diagnosis of urinary retention I was glad to know the root of my problems but I also I felt humiliated, defeated, and overwhelmingly and embarrassed.
My many confusing symptoms were caused by a broken part…and to make matters worse it was…down there…
As I continued my daily life I had a menagerie of thoughts I needed to work through. Sometimes facing the world was difficult. To help process my thoughts I started journaling sometimes as prayers to God.
I had so many notes I decided to start an anonymous blog TrudyTriumph.com, under the pen name Trudy Triumph.
On February 12 of 2012 I posted my first blog entry sharing with the world about how I felt about my diagnosis of neurogenic bladder.
The book started then too.
Here we are 4 years later the book was born, hard labor and a collaboration that happened, beyond my wildest dreams.
When I imagine the reaction of my friends and family to this book and its topic, I feel a bit queasy because, now they will have a peek into my very private life.
Part of me does not exactly want to be remembered in connection with a toilet, yet I see toileting dysfunction as a last frontier of topics that need to have mature acceptance and an active audience.
Here I am talking to you about bladder and bowel problems. This was once an unspeakable topic for me. I knew that good girls did not discuss such topics. Now you can see the deep crevice in my mind, I needed to cross.
And yes I not only crossed it I threw my paddle away!!
We finally have a book that is by a patient, for a patient. Now the world will see the other side of the story.
I would like to do a reading from Beyond Embarrassment
Beauty from Adversity
I collect sea glass — 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.
And now this book Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel is a reality.
There are many people who made this night possible.
First of all, I would like to thank my compassionate, brilliant, and encouraging husband, Randy Lake. He is my partner in life, and I am so very grateful. He has been supportive of my wrestling with issues as a patient and loving me through difficult situations. The topic opens up aspects of our private life as well. He agrees with me that this story will help people, so he is willing to lay his privacy aside.
After I started the blog, my urologist Dr. Lora Plaskon suggested that I write a book her confirmation was empowering.
My luck did not end there. I have a dear friend, Julia Parker, who is a research medical librarian she really believed in this dream and made it her dream, too. When Julia started adding her research and grounded ideas, we got excited because the manuscript became balanced, complete, and credible, my story and her in-depth research, like yin and yang.
My road to finding the healthcare and support I need is sprinkled by lovely people. Before I retired my colleagues at the Kent school District, including the school nurses at each facility, helped make my working possible.
My dear friend Dr. Earl Bardin whom helped me on the right path to good medical care.
Along the way in the early days when my confidence was rock bottom I had proofreaders who provided me sound advice and encouragement: Susan Kopczynski Jostrom, Kathy Imahara, Susan Engle, Joan Burt, Elaine Plummer, Mary Etter, Sandy Newcomb and Renee Meade. They gave me great ideas and helped me see that my project had potential to continue. What they saw was raw and slight but these women took the time and offered up hope and saw potential in my writing.
I also want to thank the people, some anonymous and some not, who have shared their heartfelt stories and expertise with us.
I had encouraging writing coaches, kind and so very talented editors, So many people helped with this project. Too many to even name.
Beyond Embarrassment offers coping tips, facts not just for those who suffer from neurogenic bladder and bowel but others that might have a difficult diagnosis to overcome.
I want to reassure others afflicted with medical disorders that they are not alone, never forget we need to advocate for ourselves, that there are ways to cope, and life can be wonderfully lived.
We all have the right to shed the shame and stand proud!
I realize lately I have been complaining a lot about my well being. I apologize for that, but since I feel rotten and this is my blog, you get to ride along. Personally, kidney- bladder infections are the pits. I have been letting my family practice doctor handle my chronic bladder infections these days; perhaps it is not working out so well.
Last Wednesday I felt an infection start. My urine smelled like ammonia; I knew I was in trouble. The doctor told me to “make sure I needed antibiotics”, so I waited until my urine was cloudy and my bladder and body was wracked with so much pain I could barely stand it. I went to the Saturday clinic, thinking that I could drop off a urine sample and then get some antibiotics.
But, no, this is where my story gets started . . . .
After inspection of the cloudy urine, I was told I needed to wait until 9:45 to see a doctor. I was not going to be given antibiotics until I saw a doctor. It was a Saturday and I had a baby shower brunch that morning, a visit with my daughter after that, and a WACAP Auction (Fundraiser for Homeless children) to go to later in the day. So for 2 hours I waited on that uncomfortable chair, in agony, as my body throbbed. And, of course, I did what any red-blooded American girl would do in that situation: I wept. I cried because of the discomfort. I blubbered because the system is so screwed up. I sobbed because I was infuriated that I knew I was getting a bladder infection on Wednesday, but had to wait until my urine was cloudy. I was outraged because the doctor insisted on seeing “cloudy urine”, my kidneys hurt and their degeneration was once again evident, as I tried to sit on that horrible chair.
Wait, it gets better . . . there’s more!
So, I was finally called in and my tears flowed. By that time, my eyes were puffy and I had to have my temp taken, my blood pressure taken, my height: all the time-consuming stuff . . . I admit I was not patient with the nurse. I explained that I was a “frequent flyer”, that my records were on file . . . nonetheless I needed to to answer all of their questions. By this time, I felt ready to faint.
Now, here it goes. She left the room and came back: With a Form! Just one more, she says. How much alcohol do you drink on a scale from one to 10; and Do you think you are clinically depressed? Oh my goodness!! NO, I told her. “I am not an alcoholic; I am not clinically depressed. I had a very painful bladder infection and was made to go through so many hoops to get help.” “I was honestly really angry and I cry when I am frustrated.”
Finally, I was able to see the doctor, and given antibiotics.
They did not kick in until the next day, so I continued with my Saturday appointments still prickly and pissed off from my morning encounter with the healthcare system.
Bladder infections are the pits. Sorry to unload. (Whew, that does feel better)